Dreams of a Wildflower

Amazingly, I survived...

2009-11-12T20:59:00.006-06:00

I know. I have been remiss in writing. I think often about what I want to write and begin to formulate a post in my brain. But time is an ever elusive beast these days and the posts in my mind tend to become irrelevant or tired by the time I decide to actually commit them to written word.

So, instead I have decided to just sit down and see what rambles out. I have no conscious idea of where I will go with it today. But bloody hell, I never end up writing what I originally intended anyways!

Life for the most part is good. Alec is doing remarkably well. He has his shit days, as we all do. But he is no longer quite so fearful of losing me. I no longer have to be within view at all times. He plays. He laughs. He tumbles. He bounces. He is remarkably like a “normal” little boy. A little boy who doesn’t have a care in the world. A little boy who did not watch his dad slowly die.

If you stop sometimes you can see the darker, deeper affects of his loss. He seems to understand things on an emotional and cognitive level far beyond his years. He worries that people are unhappy. That people are sad. That someone might get sick. He talks about Cancer and I think he sometimes has a more profound understanding of it than many adults.

You can also see other tread marks on his life as he rebelliously shuns growing up. He wants to be taken care of. Safe. Secure. Dressing is a battle. Potty time is a battle. As it very well may be with many children. And in true Skye form, I may be over-analyzing the hell out of the very simple and common behavior of a toddler boy. But I know too that he feels small and helpless and just wants to be held and protected from the scary world out there. I can relate. I have the very same moments myself.

Often he goes about life, laughing and being silly. And then sometimes out of the blue he will come up and say something that tears your heart out. Recently he came up to me and said, “You know what would be cool?” And when I asked what, he said, “If the doctors were able to someday get the rest of the Cancer out of daddies head and he could come back. That would be so cool.” Yeah DoodleBug, that would be. And damn, if it were only that easy. When I explained that daddy would never be able to come back. That the Doctors tried so very hard, but they were just unable to get all the Cancer out and Daddy died. Alec responded, “I know. But it would be so nice if he did someday. I miss him.” Shit. Shit. Shit. And those are the moments that he sounds so much older than four. Like an old man trapped in a little body. And then he looks up, his eyes bright and smiling. And the moment washes past us like a leaf caught up in a stream.

Life moves on. We move on.

I think of David often. In many respects a part of him will always be inside me. I will carry him with me wherever I go for the remainder of my days on this rock. His love. His strength. His fierce determination. His playful spirit. His laughter.

Sometimes it weighs me down and my heart aches. Other times it buoys me up and strengthens me. But it is there. Always a part of me. I am Skye. I was once David’s wife. I was his Wildflower. His best friend. His Lover.

Now I am a widow. But really, I am so much more than that simplistic title implies. My identity is constantly changing, as am I. No, I am no longer someone’s wife. But I am still Skye. Not the Skye of 16 years ago when we first met. And not even the Skye of 16 months ago, the night David died. But I like her. I think she is one brave fucking warrior. She is strong. And she still cries. Amazingly she is still able to be silly. To laugh. To dance. To dream. To place her heart in another’s hands. To love.

Sometimes I feel guilty that I like the person I have become. In many ways it was David’s last imparting gift to me. And I know that I would not be who I am today. Not only with David’s love; but with the loss of him as well. The last few years helped define me in a way I do not think anything else could have. It crystallized a lot of things within me. My passion. My love of life. My need to eek every damn, precious, silly, fun moment out of life.

I learned a lot about myself. My strengths. My weaknesses. My fears.
I learned to conquer some of them and picked up a few new ones on my journey. But I have since found that although one can never live a completely fearless life. One cannot let fear control them and the decisions they make. Just tuck your head down and barrel forward, I say. Because like it or not. Life is gonna happen. The good moments and the ones that threaten to tear your soul apart. And there is no use trying to side step that fucker. Because if it is meant to happen, it is going to happen whether you stand tall and let it wash over you, or curl into a ball.

Sometimes I liken myself to a sword. It kind of sounds silly and trite, but it fits. I have been annealed by the flames. Coming through the fire, stronger and sharper than ever. It did not break me and I will forever be stronger because of it. It is not that I am ok that David died. Far from it. And I am not trying to find meaning in his death. He died. There is nothing I can ever do to change that reality. But with his death, I have been able to finally find myself. Truly. And to actually like the woman who stands before me in the mirror. And through all the heartache, pain and darkness…somehow something beautiful has emerged. Hope survives. Love survives. Amazingly, I survived...

Life is just full of surprises…

2009-09-16T13:21:00.006-05:00

All the little moments that make up our life are precious. They are the building blocks of our life. All the other stuff, the errands, the projects, the inconsequential crap that often times tend to overtake our daily lives…in the end means nothing. It is just filler. Life and truly living is the key. Sounds so cliché, but it is true.

Because one day you are sitting on top of the world and everything seems perfect. Life is wonderful. And the next moment you are curled in the fetal position beside your husband in a hospital bed…sobbing. The nurses furtively wandering the halls trying not to intrude as you try to wrap your mind around the fact that your husband has been diagnosed with a terminal brain tumor. That he is going to die. And mostly likely in mere months. It was heartbreaking and beyond conceivable. But it was how it was, albeit David gave em' a much longer run than expected. That was my reality.

Those days are forever etched on my mind. And have become a constant reminder to me that every second must be relished. Every smile, every laugh. Everything. And that is what I do now…

David and I spent every waking moment together. People always used to give us hell that the honeymoon would end someday and that always made us laugh. We were married 12 years and we never expected the ‘Honeymoon’ stage to end. We were inseparable and I thought I could never live without him.
Thankfully I was wrong…

I once told David that if I could, I would take the Cancer onto myself so he could live. I so desperately wanted him to live, even if it meant I could not. But he just smiled, gently stroked my face and said, “No wildflower, that is not your path. You were meant to live beloved. I never would have had the strength to go on without you, but you have always had a deeper strength inside you and will survive this. You will live. And smile for me.”

I remember those words. And after he died, I wanted to die too. But I didn't. I continued to live despite every cell in my body shrieking in pain. At first the only thing that kept life in this body was David’s will for me to live. And then in time it became my own. I learned that life. All life. Even my own…was precious. And I value it much more now than I probably ever have. I not only want to live, play and relish the world around me because David’s time was cut short…but I want to do it for me. How crazy is that?!

There is so much beauty surrounding us, if we only take a moment to sit and embrace it. And despite the dark roads I traveled with David. And the many dark nights I traveled alone. I have seen so much of that beauty around me. I see it in my little boy and his wonder at the world. In the friends and family who stood with me, weathering the dark storms that buffeted my life. My mom who did things that no mom should ever have to do for her daughter or son-in-law. In rainy days. Moonlit skies. In the winds blowing through the trees. And the sound of rain splashing the windowsill. There is beauty everywhere. And despite the damnable fact that death is a part of our lives. So is life.

Some have said that they felt a shift in my writing for some time. Albeit, my posts have become infrequent as of late. But for those of you who had not already felt this shift, I have someone in my life. I never intended to be dating so soon really. It just happened. He came into my life as a friend and has now found space in my heart. Most are absolutely delighted. Many have been supportive. Some have been surprised and a few might even be aghast. But that too is life.

It takes my breath away sometimes. How much beauty is out there, if you only open your heart and mind to it. I stood on a dock not too long ago wrapped in his arms. Watching the night sky and feeling a peace I have not known for some time. Marveling that I have found someone who gives me not only smiles and laughter, but friendship and love. I found something I had not even realized I was even remotely ready for and have been able to connect with someone in a way I never honestly expected to be able to do again.

I am finding new things about myself and experiencing things I probably never would have tried. And if anyone had told me a few years ago that I would be having a fabulous time sitting on a boat, relaxing, drinking an Eastside Dark and fishing…I would have laughed at them. Life is full of surprises isn’t it?! Life is limitless and I am finding so is love.

I never expected to be here, especially so soon. And I have no clue where I am going. But life has so much beauty and love to offer, if we let our hearts lead the way. And I for one am ready…

Thinking. Thinking. And more thinking…

2009-08-01T21:15:00.001-05:00

I have been thinking about this a lot lately. Widowhood. Single parenting. Widowhood and single parenting. Everything is so much more complex now. Things take a bit more effort. Life takes a bit more effort.

What once was one trip into the house with crap from the car, now takes me 2 or 3. Getting ready takes longer, as there is no one to divert the little man when he wants my attention. Cooking, cleaning, and basically everything requires a bit more effort. There is no longer that second pair of hands to help out.

I am learning out of necessity to juggle about ten things at once these days. I no longer have that live in person to hand Alec off to if I have a headache, or bills or the flu. But I have not in some time, really. I just muddle through as best I can, learning how to make the best use of my time. Becoming more efficient. David would be proud. He was always about efficiency and now I too am learning how important it is and imperative to survival these days. Becoming more efficient with the day-to-day crap. Leaving more time to play. To live. To do the things that really matter in life.

I am finding my way in this new role. A few of the ladies from my ‘Wonderful and Wacky Widows’ playgroup (And yes sadly there are enough of us that we actually have our own playgroup) were just talking about this the other day. How despite everything we have gone through. Everything our children have experienced. We are doing more than ok and our children are astonishingly well balanced despite everything they have had to go through in their short time on this rock. We are all doing it. Getting through the days. And I find we are no longer just merely surviving the days. We are moving on. Piecing our lives back together. Finding our way. Finding love. Finding hope.

Not to say it is not hard some days. Some days are beyond brutal. And some I feel weary and beaten down. And some I cry. But I get through those moments and at the end of the day think to myself. Damn. I did it. I never would have thought I could have, but I did.

Recently I made it through our first flight together. It was tough. Much tougher than expected, but I got though it. I would watch all the other “Traditional” families wistfully. As one parent would hand the kid off to the other as they juggled luggage, tickets or food. There was no one to hand Alec off to...and yet we got through it. And although numerous times throughout the flight, during the long layover and navigating across the airport I thought about how much it sucks to be a single parent. I did it. And that in itself was empowering!

Since that flight, it has gotten me thinking. Thinking about families. Thinking about my future. And what it means to be a family. Whether you have the “Traditional” family unit of a mom and dad. Or maybe you have two moms…or two dads. Or maybe you are a single mom or dad through divorce or widowhood. Or you have no children, and your family is your wife or husband. Your parents. Your friends. The concept of family encompasses so many different forms. No particular composition is the right one and no family is perfect. And even in our own lives, our families change. People come and go. Families get smaller…and they get bigger too.

I watch families when I am out and about incessantly as of late. At the zoo. At the restaurant. I watch longingly at them. The dad smiles and scoops up one of the little ones. The mom meanwhile juggling another kid on her lap. I look at those families, knowing full damn well that although they are smiling and laughing…there is no saying that their lives are perfect. Who knows what kind of marriage they have. Or what crazy messed up curve balls life has thrown at them as well. You never know what hell others are going through under the surface of pretense.

But I look at them and what they represent and I realize I am open to having a life like that again some day. I know some who have decided that marriage is no longer something they want. That they loved once and the loss broke their heart. And the mere thought of having their heart torn to shreds again is too much to bear. I can understand that, it is terrifying. And yet, I so loved being married. Sharing my life with someone. Having someone who knew you to your core and despite your eccentricities…loved all of you. And I look at those families and I think...that could be me again someday. Will be me again someday. It will be different. But it always is. But I look at those families and I realize that despite the shit sandwich life handed me, and David really, I would do it all over again. Because being in love. Having someone love you and sharing quiet moments together. Crazy moments together. Any moments together…are precious. It makes me think about what it means to be a family. And what family means to me. And for me...it means everything.

I do not know what shape my family will become. But I know life has a miraculous way of working its magic. And despite all the heartbreak and loss that one experiences. Hope and love is always present as well. My life will take many turns. Life is one hell of a crazy fucking roller coaster. I am still on it and do not plan to get off any time soon. So, I’ll enjoy the highs when I have them, knowing that there will be lows as well. But I will take them all in stride. Knowing I can survive anything...

The rain cloud…

2009-07-01T10:30:00.001-05:00

A friend recently told me that through the writings in my blog, she believes that I saw myself as a burden during those final months. She then reminded me that my true friends, the ones that had been there during those difficult and painful years did not feel burdened. They were glad to have been there for both of us. That when they were feeling so helpless, it helped them to be able to make a difference at a time when it felt like all hope was lost.

I had not ever stopped to truly think about that. But yes, I guess I did. Those days were so dark. And the days turned into months. We were all just trying to survive and I felt like this walking storm cloud that brought sorrow, pain and disconcertion with me.

I used to joke that I was the “Oh fuck girl” because whenever anyone heard my story or knew what my family was currently going through, they would look mortified and you know they were thinking…Oh fuck. Along with: Glad that’s not me, I couldn’t deal with that, or that just plain sucks. Or the ever popular…how do you do it?

I still think of myself as the “Oh fuck girl” sometimes. When people hear that I am a young widow, or that David died of brain cancer, or that I have a 4 year old son...I get that same look. They suck in a deep breath and stare at me wide eyed and you know what they are thinking. Oh fuck.

But, that meant a lot to me, especially from her. And it was probably something I needed to hear. I remember near the end and one of the last times David got out of the house, we went over to her place. I needed so desperately to get out. Get out of the house. Just get out. And I took Alec and David over there to unwind and play. It was a difficult day and by the end of that visit it was painfully obvious that David would not be physically able to do this much longer. I had a tough time getting him into her house and while we were there, he was distant and disconnected. It was hell.

Watching him. Knowing that somehow I was going to have to get him up and moving again and back out to the car. The impending dread and anxiety. And just wanting a quiet moment where I did not have to worry about anyone or anything. A moment to curl up into the fetal position and just be. But in those final months I did not get many of those, except when the boys were all down for the night.

But I remember that day. It is etched into my memory and it was interesting to hear how differently my friend remembered that very same day. How yes, it had been sad and heartbreaking. But how also she had just been glad to have been there. To give me a hand. Something to hold onto when I so desperately needed that. I was going under in those days. Barely surviving. Barely breathing. Barely living. Many moments I was mere seconds from exhaling one long, last breath and going under altogether. Everything stopping. No longer having to labor on.

But somehow I managed to keep my shit together. Keeping myself above water and ensuring that both Alec and David were safe and cared for. But it still brings tears to my eyes to know that through all those dark times, people were there for us. Because they loved us. Because they were our friends. Not out of some sense of duty as I so often felt like. No obligation. No burden. Just friendship. That, my friends, is one of the most precious things life has to offer. Love and friendship. If you have that, everything else is inconsequential….

The support surrounding us was amazing and I felt and still continue to feel some days like our whole situation was a burden. I was so damn independent. I hated asking for help. Knowing that without it I would possibly not be able to stay afloat frustrated the hell out of me. I felt like this enormous failure to have to lean on so many for support. I wanted to be able to stand proudly on my own. And yet, I did. I asked for help and accepted it. I knew that if I did not ask, I would go down. And if I went down, the whole family went down with me. I was their caregiver which meant I could never go down...not even for a moment. So, I swallowed my misplaced pride and reached out. And when I could not, friends invariably would swoop in periodically and miraculously take care of things that I was unaware or unable to ask for specifically. They just did it. They watched me like a hawk and made sure to take care of me when I was unable or too distracted to take care of myself. And through this all I made deeper connections with those friends. With myself.

I think I am finally realizing that they did all of this not out of some misplaced sense of obligation. Not a burden. Not a duty. They did it out of compassion, love and friendship. Even now I cry when I think about it. How selfless, caring and loving everyone was towards us. And how they continue to be now.

I still feel that sense of burden when I have dark times. When a moment takes me unawares and brings me to my knees. When I am sad. When I cry. I feel like a dark cloud again raining on everyone’s parade. And maybe someday I will learn to show the same compassion towards myself that everyone else has shown towards me?

Moving Forward...

2009-06-11T12:23:00.003-05:00

It is difficult thing...moving forward. Terrifying some days. I think the vulnerability can be more acute, because you truly know what it means to have loved and lost. It is a complex and often delicate topic. Creating murky waters. Some will dip their toes in the water, testing them only to pull them out and sit on the shore for a bit longer. Others may choose to never get in again, preferring to dance on the shoreline alone. And some may go for a leisurely swim and then decide to take a break on the sand, basking in the sun on their own. While others will dive in head first, totally submerging themselves. There is no right or wrong way. Just the way we choose. Each of us will find it on our own and in our own time.

I think that opening yourself up once again takes great courage. You risk getting your heart broken. But that is always a risk, whether or not your beloved has died. You risk finding love again, only to lose it once more. You risk watching another lover die. You risk giving your heart to someone and then having them do a two step all over it. And yet, I believe the benefits far outweigh the risks. Because only if you truly open yourself up, can you ever truly experience love again. And for me, that cushions the fall a bit.

Not that you will ever have that same love again. You can’t. And it one of the damnable things to accept. But that is not to say that one cannot find hope again. Or love. Or passion.

I have found that some on this journey may try to replace their beloved. I think that is a difficult path. Your lover is gone and no matter how your heart breaks, they will never be coming back. They are gone and I do not believe you can ever truly fill that specific void again. Time and healing will help us to discover how not only to survive but to live. It will always be there, but hopefully the ragged torn edges will heal and we will be left with a more tender pain and quiet sadness. But something that is no longer all encompassing. It will become another tread on our heart. Not to diminish the pain and heartbreak we feel when we lose a loved one, our heart was torn apart and that kind of heartbreak is going to leave scars. And those scars will become a part of us, changing us as we carry them. Some days they may weigh us down. But our hearts will mend and beat strong. Thankfully our hearts seem to be made of stronger stuff than I ever imagined. They can be torn out of your chest, beaten and dragged around. Run over repeatedly. And yet it still beats. We continue to live despite that fact our heart seemed broken beyond recognition.

I believe one can never have that same love though, it is unattainable. You will never find that person again and for better or worse you are no longer that same person anymore either. That love you had is gone and can never be recreated. And yet, I do not think this means the end of all hope. It just means that if you choose to find love again, it will be different. It will always be different. But with that, you may discover new things about yourself that were hence undiscovered. And you can find joy once again. And hope. You can smile. Maybe your heart has the capacity to hold more love than you ever imagined. And that love might be just as amazing as the last, only different. Like different hues in a rainbow. You will find someone who will take your breath away. Someone that you can see yourself hopefully growing old with and when you look at their hands, you may imagine them spanning the years…becoming aged and wizened, but still clasping yours. You may look into the eyes of a new lover. Or friend. Or both. And you may see love and tenderness. Someone who can sooth your own aching heart. And you will discover a new love. A new life. And with it new dreams.

Some have said they do not want to find love again. They only want a partner, a friend, or a good father. That they found love once and that is enough. It is different for everyone. There is no right path. No map really. We are all just wandering along creating our own paths. For me, I want rockets. I want someone to take my breath away. To have that glorious feeling of butterflies in my stomach when he enters the room. And when he touches me I want my skin to be on fire. Some believe that you can find a lover, or a good father, or a friend. But not all at once. Call me crazy but I believe that is all possible in one man.

There is no perfection in love. I am far from perfect as was David. And I think it is so easy to canonize your dead spouse. Yes, you loved them and there will never be another person like them in this world, but they were not perfect. Sometimes it is easy to forget that. A wise friend once said most men would never be able to live up to a saint and some would not even try. Dave was no saint, but I could see what he meant when I went back and read some of my writings. We had a beautiful marriage. Our love was strong and we had a good run for longer than many. It is easy to remember all the amazing things about him, and with that I think in some ways I was canonizing him. Creating this person that was larger than life. But he wasn’t. He was all too human as his own mortality is evidence of. He had strengths and weaknesses. He had hopes and fears. He rose to the occasion, but it is not to say he did not stumble. But bloody hell, we all stumble.
He was an astounding person and my life will forever be better for having had him in it for the last 16 years. I hope to take all the beautiful things I learned from him and being with him in life…as I live. As I move forward.

So here we are. It is a painful lesson to learn but a priceless one as well. Life is too short and love is one of the most precious things this world has to offer…and I for one believe we should embrace that however fleeting or eternal it may be.

It is a potty for cripe's sake!

2009-05-26T11:20:00.000-05:00

It is that time. One of those milestones in your child’s life. Alec is potty training and doing phenomenal. He is a bit behind on the curve, but that is ok. Many children have regressions with the loss of a parent. Be it social, behavioral or cognitive. Sometimes they are subtle and sometimes they are earth shattering. But it affects them all, just as it does us.

Alec’s regression was the potty. He wanted to be little forever. To be taken care of. To feel safe. Can you blame him? His whole world was turned topsy turvy when David died. When Alec lost his dad, he learned way too young how incredibly fragile and precarious life can be. The rug was pulled out from him and he felt scared and fragile. Hell, we all did. And he just wanted to be taken care of…I can relate.

But as things have begun to settle, Alec is now embracing potty training. Seemingly ready to grow up a little. He now is excited about growing older. He is getting more confident every day and my heart fills with sunshine to see him doing so well.

Potty training is a momentous occasion but one that has stirred up some dark memories for myself. Cleaning Alec’s potty is way too reminiscent of that damn commode we used for David. It takes me back to those last five months and the dark roads we traveled together. How I had to assist him in so many of his daily tasks and how as the tumor progressed so his need for more and more assistance did as well. David often needed help dressing, as he would become confused with the arm and neck holes. And as things progressed, I had to dress him completely. He also needed help with eating, daily hygiene, bathing, and the bathroom as well. God how those were dark times. And god how I hated that fucking commode. Dave hated it to. I remember once how he just cried. He loathed that I had to help him. That he could not do the things that most people do every day without a second thought and how at the blink of an eye everything can change forever.

I loved him and would have done anything for him. It brings me peace that I was able to care for him; it is what you do when you love someone. You take care of them no matter how messy or painful it is. But it still sucked. It was still heartbreaking to see and it tore at my heart every day. During those dark days, I cried myself to sleep nightly. Every night. Week after week. Month after month. Time did not seem to exist. I slept little and my entire world, my entire focus was caring for both of the boys. It seemed like I was living one long hellish day that never ended. Although it may have been only five months, it felt like a lifetime. And now some of those damnable memories persist, roiling to the surface.

When I cleaned Alec’s potty for the first time, it hit me. The memories flooded over me with all the subtlety of a Mack truck, and I sat there and cried. All the crap from those final months swirled to the surface.

It is almost laughable how sad and fucked up things can be. How most parents doing the potty experience will doubtfully not have so much emotional crap tied up with what should be an ordinary event. It is a potty for cripes sake! He is peeing on the potty and I am crying in the bathroom! Seriously?! And as I sat there laughing and crying, I thought to myself, get your shit together girl! And I did. I came out and we laughed, clapped and did the potty dance. He got his sticker and the moment passed. Not to say that it still does not bring a little sadness every time I clean it, but I am finding each day is a bit easier than the last. We will be sitting on the big potty soon and this too will just become a memory. And maybe someday I will not have quite so many dark memories lurking near the edge of the surface. And maybe one day those memories will not carry with them the sharp pain of loss and heartbreak that they do now. One day they will just be that. Bittersweet memories of the life I once had and a man I once loved and shared my life with.

And maybe that is what true strength is?

2009-05-10T13:13:00.002-05:00

What I would not give to be living a quiet life with David and Alec. Romping in the sunshine. Going on road trips with the tunes playing loud. Living the life I had imagined. But life is not always what you plan. I say that frequently, almost ad nauseum probably, but its true. I am learning that does not mean your life is over. It just means the life you originally envisioned is gone. But with each end there are new beginnings…

The dream of our life together is gone. Like grains of sand in my palm, one big gust came and scattered them into the wind. The life of us growing old together is a path that will forever go untraveled. We came to a crossroads and David got off. He got off way too damn early. And I am here.

I stopped ever so briefly at that crossroads, lying on the ground...curled in the fetal position. Wishing the pain would just end. I cried and cried until I felt there was no more tears left it me. And yet somehow there always were more and the tears would come again. My soul felt empty and I was spent and tired from the years of worry, caregiving and grief. I contemplated not moving forward. Not moving on. Just stopping. Everything. But that was a transient thought. That damn resilient nature of mine forced me up, picking my ass off the ground and shaking away the utter blackness that threatened to consume me. I stood and with no clue what the hell I should do or where I should go I began to blindly put one foot in front of the other. I picked a random direction, put my head down and barreled forward.

I find I am no longer running blindly anymore. It is more of an amble now. I am meandering along, no longer slumped with my head bowed against the winds that threatened to take me down. I am looking forward. Looking around. Checking out the scenery as I go. Finding new music. New friends. New adventures. New Dreams. Moving on…

Some days I feel like the energizer bunny. I just keep moving. People say I am strong, but often I think it is more that I am too damn stubborn to give up. It keeps me moving like it kept Dave moving. Dave could be one stubborn man. Mind you, that gave him immeasurable strength. And that coupled with his intense will to live made him a supreme fighter. And yet, as he began to decline, it was a bit to our detriment. It made caregiving quite a difficult task for me some days.

And I have come to realize that honestly I am just as stubborn as he was. Some people say I am tenacious. I think that is just a nice way of saying I am an obstinate pain in the ass, but that too has helped me I think. It has kept me moving forward despite the circumstances because there was no way I was going to let this take me down. That fucking tumor took Dave down, so I will be damned if I will let it take down the rest of my family as well. I know. It is a tumor, not a person…not a living entity. But sometimes it did not feel quite that way. The tumor seemed to take on a life of its own as it began to send those tendrils deeper into David’s brain, slowly taking his life. It would move around obstacles we placed in its path, almost laughing as it got a deeper hold into him. It was not just a mass of mutating cells. It became this beast we were all unsuccessfully trying to contain and tame. I know some brain tumor patients who went so far as to name them. We never did that, but we felt its presence in our life for the remainder of David’s days.

And now here I am. Writing about this journey…the journey I began with David and that I now continue alone. I am constantly astounded that people read this blog. Seriously. I never considered myself a writer. Albeit, after going back and reading the beginnings of this hellish nightmare in June 2006, I can clearly see my writing style has developed and progressed since those days. But often I do not know what I will say when I begin these posts. And invariably the post I originally intended to write does not get written once my fingers hit the keyboard. Everything rattling around in my head just seems to flow out when I sit down at my computer. This is my heart and soul that I pour out onto these pages. I open myself completely here for everyone to read; because ironically it is so much easier for me to do this here that when I am standing before you.

And yet some days I feel it is utter insanity that I can journal like this. Putting all my pain, hopes, fears, and insecurities out here for the world to see. I am touched that people have found hope and comfort in reading my words. This blog has helped sooth not only my aching heart, but has helped refocus my jumbled thoughts into some sort of cohesive structure.

In those first few months where time was meaningless and many sleepless nights were spent at this monitor, it was a place where I could channel all of my pain, fear and loneliness. And along the way I found people out there who were listening as well as others walking a similar path.

Many of you have helped me feel less alone on this dimly lit path I travel. So I thank those who have continued to stop by for a read, despite the dark roads my mind took me some nights. The listening without judgment and the unconditional support and love that has and continues to surround me is precious. The kind and gentle reminders that I will survive this and that although even to this day I do not always believe it…I am strong. Stronger than I will ever probably give myself credit for.

Some days I still feel fragile. Like my heart is made of glass and that at any moment it could burst into a thousand shards. And some days I feel as if acknowledging that vulnerability will somehow weaken me. I fear that if that were to happen, I might stumble and fall. I know there will be people to lift me up if I do, but I do hate to fall. It is messy, painful and I get all bruised and banged up.

I also think I fear people seeing that vulnerability. I have this crazy notion that somehow I have been keeping up this great farce and someday everyone is going to stop and say…”Hey, wait a minute. She’s not that strong. She is just as scared and fragile as the rest of us!” And I am, you know. I may have an inner strength inside me that burns brightly, but I too am fragile. Sometimes just needing strong arms to wrap around me, sheltering me from the storm once in awhile.

I keep my head held high. I keep moving. But that is not to say I still do not hurt or mourn. It is just my damnable nature to keep moving. Keep dreaming. Keep fighting. Some days I used to think it would have been so much easier to give up, but that goes against everything I am. So I trudged on.

But I find I am more at peace these days. I am embracing more quiet moments of just being. Life is full of more smiles. More laughter. More hope. A future. I am finding my way and learning more about myself everyday…and that is something. And maybe that is what true strength is?

The Mix…

2009-04-17T08:40:00.004-05:00

Life is a lot like a mix tape. It has angry songs, poignant songs, invigorating songs, sexy songs, beautiful songs and songs that take your breath away. Songs that make you cry and songs that lift you up and bring a smile to your face. And just like in life, the songs change. Music you once listened to does not quite resonate like it once did and new music lights up your soul. And a new mix is created…

We are like that. We change. Hopefully moving forward and embracing the new directions and paths life presents us, but not always. Things that once used to be so important no longer seem pertinent in our lives. Songs I once loved now do not seem to strike the same chord they once did. My tastes change. I change. Life changes. I have new interests. New insights. Some things remain the same. Some things are just who I am. My core remains unchanged like this stone sitting at the bottom of a river. The eddies swirling around me, bringing new life, new hope and new direction.

Even now, I have noticed a shift in my musical tastes in the last year. Yet another signal of all the changes I have undergone. I am not the same woman I was and never will be again. Sometimes I think about her, the woman I was, and it makes me sad. I miss her complete innocence. Her utter naivety of the pain and heartbreak one person could endure. Her total incomprehension of what it truly meant to die and how messy, painful and heartrending it could be. I miss her simplicity.

And yet, I like the new Skye. She is more confident. She has an inner strength that goes to her foundation that can never be torn down again. She is a warrior and a survivor and not one to be trifled with anymore. She has a low tolerance for bullshit and platitudes. She has few filters left and finds people should not ask her opinion if they really do not want the answer. She is not one to be fucked with anymore. Life is too short and there is enough crap out there to deal with in our everyday lives that anything not positive and/or productive is not worth her time.

Do not get me wrong. I still get insecure. I still get scared. And I still hate being fragile. I am still an emotional, passionate woman and probably always will be. I still cry…a lot. I have always been a crier and probably always will be. But David taught me that crying is not a sign of weakness and I try to remember that when the tears come…as they invariably do.

I am human and I will make mistakes. I will fuck-up. But hopefully I will not be quite as hard on myself as I once was when I do. I will continue to try and embrace life with all of its insanity and unpredictability and continue to dream. To live. I will hopefully continue to change and evolve and move forward…just like those mix tapes.

Dave loved mix tapes. He used to create them for me regularly. We always had a strong connection to music and throughout our courtship, marriage and life; it has played an integral part. Songs have always been something I identified with. Kind of like sign posts for the moments in our lives. Little musical moments that bring back specific memories and emotions.

And over the years as those tapes became CD’s, he did not make quite as many as he once did in those first few years, but he still made them. Sometimes they would find their way into a card or onto my front seat …waiting for me on my drive to work. They always had a theme. Dave was all about themes. And they were splendid! His mixes had a certain rhythm and cadence to them. I used to throw a bunch of songs on a CD I liked and call it a mix and David would laugh. Mine were always a bit of everything. Scattered and quirky…kinda like me.

Music was such a big part of our lives from the moment we met. We both loved music and it was something we shared. I have always believed music has the power to transport you to wherever you want to be. It can uplift your spirits and make you soar and it can also strip you down to your core, laying your vulnerabilities bare. And seeing as our love affair began with music…so it should end that way.

So, I think it is time for one last mix for David. I know it may not have the same flow and rhythm David’s would have had, but I will do my best.

Below is a brief musical journey through our life. Songs that were quintessentially David or pivotal in our lives and marriage; little moments captured in song of our all too brief life together. And a few that reflect my own journey through grief and my path towards a new future…

Note:
Two songs are missing from my mix link because the songs were not available to be added.
Men without Hats – On Tuesday
Assemblage 23 - Drive

A song list is below as well and a little bit of history on the songs I chose and why....

The Hooters-And We Danced
This song takes me back to the early years…

B-52’s – Roam
Dave loved the B-52’s and this song reminds me of all the travels we were going to go on and places we were going to see, but never got the chance.

The Rembrandts – Chase the Clouds Away
I came across a mix tape that David had made for me way back when we were dating in 1993. I absolutely loved this song then and what it had to say. Ironically, it became more apt in the final years of our marriage than it was then. Strange how life leads us down different paths than we expected to take.

Dire Straits – Romeo and Juliet
People used to say our love was like a fairy tale, sometimes comparing us to Romeo and Juliet. Unfortunately, we were two close to that fateful pair and ours was a tale of tragedy too. But we both always loved this song and its passion. A love that would transcend everything.

Genesis – Follow You Follow Me
The lyrics pretty much say it all. Genesis was one of David’s favorite bands and we saw them in concert his last year of life. When this song came on, it brought David to tears. I think we both knew that we were on the final stretch of this journey and that our paths would be parting in the near future.

Indigo Girls – Power of Two
This was played on every road trip and the song was us, simply said.

John Mellencamp – Your Life is Now
Dave always loved this song and it was the one he chose to be played at his ‘Celebration of Life.’ It was his motto. His favorite line was, “Do you believe you’re a victim of a great compromise cause I believe you could change your mind and change our lives.”

Tom Petty – Wildflowers
I was his wildflower, hence the name of my blog.
He always said this was my song…

John Mellencamp – Dance Naked
Dave always used to sing this to me and even now it always brings a smile to my face.

Crazy Town – Butterfly
He always used to sing this one to me too. Although I have never had a tongue ring. ;)

Men without Hats – On Tuesday
This song just reminds me of him, when we met and our 15 years together.

Snow Patrol – Chasing Cars
Lazy days in bed. A beautiful love song…

VNV Nation – Darkangel (Gabriel)
This was David’s anthem song. He used to sing it with such passion. He was so angry about what the Cancer did to our life. To our family. To me. He always talked of what I had to do and how much he hated it. How it killed him to see it tearing me apart.

The All-American Rejects – Move Along
David used to crank this on the way to surgeries, chemo, appointments…you name it. It got him focused and ready for “battle” I used to say. It kind of became my own anthem for a time after he died. Keeping me moving forward, despite every ounce of my being wanting to curl up and fade away.

The Weepies – The World Spins Madly on
I blogged about this once and this post pretty much says it all.
Post titled: The world spins madly on... Friday, July 04, 2008
http://dreamsofawildflower.blogspot.com/2008_07_01_archive.html

Lifehouse – Broken
The lyrics say it all and the chorus pretty much captures the place I was emotionally after David died.

Train-When I look to the Sky
If this song isn’t about bereavement, I don’t know what is. All the lyrics are fitting, but the opening lines I have always felt were so true.
Ingrid Michaelson – Keep Breathing
Read the title. This song is beautiful and haunting. Enough said…

Shiny Toy Guns – Rainy Monday
David never heard Shiny Toy Guns but this song reminded me of him. He would have absolutely loved this band.

David died on a rainy Monday, and it rained for days after. But now when I hear this song, I think about David. And although he is gone, I still have the love and beauty that resides inside me…and always will. Not that this song is remotely about that, but that is what it reminds me of.

Assemblage 23 – Drive
I love this song, the lyrics, everything. And as the song says, “The open road unwinds before me, an onyx ribbon spreading out. No idea where I'll be going, sometimes the journey is what counts.” After everything I have seen and experienced, I now believe that the journey is what matters in life, not the destination.

Van Halen – Dreams
This song is just Skye. Pure Skye. I have always loved the line, “Standing on broken dreams, but never losing sight.” It is such a visual image and one I believe to my core. That is life. Some dreams are lost along the way and new ones rise like a phoenix out of those ashes.

I believe we all should continue to dream. Live. Believe. Hope.
Standing on all of our broken dreams and daring to reach towards the sky once more...

The Balancing Act…

2009-04-09T10:23:00.003-05:00

Everything in life is just that…a balancing act. I am finding this is even more so for parenthood and more specifically single parenthood.

Someone once told me that you can never be both a mom and a dad. Ok, I understand that. Physically, No...you can not be both. And yes, there are limitations to all of us and how much we can be for our children. But I think one can try as hard as hell to be as much emotionally and physically that they can be. No, I am not a replacement for David and never deluded myself into thinking I ever could be. But I will attempt to fill the gaps that he has left as well as I can.

I remember after David was diagnosed I used to watch him. Watch him interact with Alec. Watch him be a dad. We never gave up hope, but in the back of my mind I knew there was a very real chance that David was not going to be around to raise Alec. The diagnosis was terminal and although we fought like hell for David’s survival…that was ever present in the back of our minds.

God, it pissed me off. That Alec should lose his dad so young. That he would not ever know the amazing person he was. That from the young age of one and a half, Alec was never going to know his father as Cancer free…as healthy. I used to scream at the universe. With all the shitty dads out there, the dads that chose not to be present or who were in their kid’s lives but total jackasses. Why? Here David was. An amazing dad and yet he was not going to get to see his son grow up. He would miss his first day of school. His first heartbreak. He would not get to teach him to drive. Or send him off to college. It all seemed so damn unfair. And yet, as we have all painfully learned. Who said life was going to be fair? No one. And Alec is lucky in the fact that he did have such a wonderful father who loved and adored him. Even if he is no longer with him today and as he grows into a man, Alec will know that he was loved by his daddy and that if there was any way in his powers, David would have stayed. Would still be here today. And hopefully that will be enough…

David knew this would be an eventuality too. He rarely spoke of it. But he knew. It made him sad. It made him angry. But near the end he seemed to find some sort of peace with it. He worried about Alec and hoped that someday I would find love again so that Alec could see how two people in love should be. He wanted him to grow up knowing what a good relationship was and how it was supposed to be. He wanted Alec to have that role model. I thought he was fucking nuts. How could he be ok with another man raising his child? And yet, now I realize it was not about being ok with it. It was David being the ever pragmatic soul he was and that he was coming to terms with the eventuality of his death. And in the end, he was just trying to make sure we were all going to be ok since he was not going to be physically here much longer to do so. It sucked. But a lot about Cancer and this whole shitty journey sucked.

I remember early on, and even more so once the Cancer began to slowly break down David’s body, that I began watching his interactions with Alec. How he played with him. What he did. Because loath as I am to admit it, men and women are different. I may not be your stereotypical girl, but I am still a woman and I interacted differently with Alec than David did. I was more nurturing. More “motherly.” David was just as tender and loving, but he was also playful and fun! He would pick Alec up and swing him around, throw him to couch and then tickle the hell out of him. He would crawl around on all fours and get right down in the thick of it and just play. I watched all of this and drank it is. Capturing every moment. I think guys tend to be more “physical” with the kids. And I am not making broad generalizations or stereotypes here. I do not want a barrage of irate women emailing me. Ask anyone who knows me, I am all about anti-stereotypes and I break many typecasts every day. But some things I think are just how we are wired.

But as I watched, I committed to memory how they played. How they interacted. And I made a conscious decision three years ago that I would be all of those things and more. So now here we are. David is gone and I am continuing on this road of single parenthood.

I run around. I swing him like a monkey. We dance. We tickle. We play cars. We shoot storm troopers. I tend to be very physical with him and romp about. I will never be able to replace the loss of his father. I know that. I will never be able to fill the void that David has left. But I will endeavor to give him the best that I am able of both worlds…

Around the bend…

2009-03-25T12:39:00.003-05:00

I have been thinking about this crazy journey we all call life lately...
Our own individual paths. How we intersect with each others lives. How people come and go. I think of the many people that have entered my life that would probably never have been a part of it if David had not gotten sick. Had not died. And yet, here they are. Amazing friends who have decided to walk with me for awhile.

And the many old friends and family who have astonishingly decided to stay on, despite how incredibly dark and dirty this road got. They have helped me traverse the pot holes and the quagmires that threatened to pull me under. They picked me up when I fell down and when I could not stand…they sat with me in the dirt while I cried.

I think about this so often and am continuously astounded. Some of them saw things that people should never have to see or experience. And yet they did, because they were my friends and they did not want me to have to go it alone. And despite all that has happened, we continue on. Some have meandered off my path and onto others. Some may return…and some may very well never. And I am finding I am ok with that. Many more have joined me than have dropped off and I have found that I have some amazingly strong, beautiful people in my life. We are all walking along…we are all walking different paths. But at least we are doing it together. No one should walk alone for long.

And I am finding that none of us really know what is around the bend. I take great comfort in knowing that there are others out there continuing forward no matter what obstacles or crap have fallen onto their paths. We just climb over it, or go around it or turn into an entirely different direction…taking us to places we never expected or intended to go. And along the way there are indelibly new adventures awaiting us! New paths. New experiences. Unforeseen and delightful surprises.

I am learning to try not to fear so much about the future. It will be there. It is not going anywhere. It is waiting for me…whatever it may be. But it is there. I still have a future. It lays spread out before me. It was not the future I was planning. It is not where I intended to be, but it is there.

Much of it is obscured in unknowns and much of it lies further down the path than I can see. Sometimes I try to stand up on my tip toes, straining to see what lies ahead. But the distance is too great, so now I must just dance along my own path and see what comes. Trying all the while to embrace the anticipation of the limitless possibilities and unknowns that await me around the bend.

Pop...

2009-03-22T22:20:00.003-05:00

How do we do this? Any of us. Day in and day out? I am so tired of being alone. Of carrying all this crap around in me all the time. Of being strong. Of being a single parent. Of being a single woman. I hate it all some days. Although that statement in itself is laughable. Of course I hate it! This is not a dance on the beach or frolic in the park. It is widowhood.

I never envisioned my life would take a detour down this hellishly shitty road and some days it sucks. Some days more than others. And some days are amazingly quite bearable. But I hate this road…I really do. Whether the day be filled with smiles or tears.

I miss having someone around to talk to at night. Someone to share my life with. Someone to hold me and who makes me come alive. Arms I can find peace and solace from the world in. Someone who makes me feel beautiful and sexy all at once. Someone to just love me.

Some days I wake up and I feel so strong I could take on the whole damn world…many days actually. And then there are days like these. I do not know where they come from or what starts them. But it is like a dark oily tar bubble that just finds its way up to the surface and POP. Out it comes…

Many days I feel so strong but then when one of those little oily bubbles makes their way to the surface. Pop. Everything seems darker. I feel darker and my thoughts seem to take me down with them.

I am so often optimistic about the future and do not have a damn clue why. But I just believe it. Believe it to my core. Believe I will be ok. Believe I will get through all of this and that something…somehow is waiting for me on the other side of all this shit.

And then there are these days. The days where the future is so damn scary and my heart is filled with loneliness and this insurmountable fragility. My insecurities kick in and I wonder if there is hope out there for me. For my future. Will I ever find love again someday? Will I find peace in someone’s arms again? Will someone fall in love with all my crazy quirkiness and all my ‘widow’ baggage. And love both Alec and I as a family. God, I just don’t know…and that terrifies me. And it makes this road I travel on very quiet, very long and very dark.

That’s my girl…

2009-03-13T10:50:00.002-05:00

Lately everyone has been asking how I am doing. Good question.
How am I doing? I am not sure myself anymore. Some days are good...some not so good. But I am laughing more than crying, so that is something. I wake up feeling good and am trying to enjoy life and play as much as possible. I am doing things I never would have entertained doing before, like archery lessons.
Simply put, I am living…

The best way to describe it is that my thoughts are more like a quiet sadness now. I have fewer days of the earth shattering pain. They still come and they still knock me down with the force of a storm, but they are becoming shorter and the clouds and rain tend to dissipate faster than before. I am still moving forward, even if some days it is a more circuitous route.

I still think of David all the time and continue to talk to him frequently, but I find our conversations different now. Not that he ever really responds. No worries, I am not koo-koo for cocoa-puffs. But I continue to talk to Dave a lot . I do believe he is listening in some capacity, like he always said he would. I remember way back when, what seems like a lifetime ago, when he told me that he would always be there listening, he just might not always be able to respond.

But I digress...
We talk a lot, but I find myself chattering on about the day now. Or Alec. Or something entertaining that I know he would have appreciated. I talk more to him now. I do not plead as much. For the pain to end. For his return. For him not to be dead. Because I know that there is no return. There is no turning back the clocks on this one.

I do not scream at him as much anymore either. I am guessing he was always bemused by my tyrannical outbreaks. It is not that he ever wanted to die; he fought like hell to live. I know this. But he died and I used to yell out because I missed my lover. Because I was scared. Because he died and left me alone, raising our child as a single parent. Not that he had a choice, but I was in so much pain and I hated that I was stuck here on this rock without him. But now, I tend to smile more when I think of David. His love still gives me strength and I think always will. I will carry him with me always and he will be with me on every new adventure I embark on. He is a part of me now…

Just the other day as Alec and I were dancing around the house “Shaking it” to Metro Station I just had to laugh. As Alec squealed out “I love this song!” I could just see David swirling amongst the stars smiling and shaking his head, because I was converting the poor kid to my music. It made me smile from ear to ear. Because when we are having a good day, I can feel his love and joy for us and our life coming through.

I wish like hell every day he was here with me to experience a warm sunny day or dance in the moonlight with me. I miss my love and my heart aches for him. But I know he is here. He will always be here…wherever I go and whatever I do. Not the way I ever envisioned, but nothing in life ever is. And every time I fall down and get back up again…or smile and laugh at the universe, I can just hear him saying, “That’s my girl…”

The eye of the storm…

2009-03-01T23:15:00.003-06:00

How do we do this? Live amongst all the crap swirling around us and yet somehow continue on, living in the eye of the storm. How do we get up each day knowing what we know. How does that knowledge not haunt our every waking movement? And when it is quiet...and sometimes it is quiet. Almost peaceful. How do we enjoy that blissfull calm?

Sometimes as you are sitting admiring the calm, that is when you are taken unawares. You unwittingly end up meandering closer to the storm. And that storm…well, it smacks the shit out of you. And as you stumble along, you get battered and torn. And yet you continue standing. Proud and resolute. I can do this, you say. I can survive this.

And then something comes out of nowhere and hits you upside the head. Sometimes hard enough to knock you down. And you sit there stunned for a spell. Wondering where the hell it came from. You cry. You cry some more…and then you get up again. Searching for a way out. Searching for a door that does not exist. There is no door. All you can do is wait it out. Wait for the storm to dissipate and hope like hell that when everything has passed you are still standing.
That is all we can do…It is what I do tonight.

The many paths of grief…

2009-02-24T17:05:00.003-06:00

More often than not, for better or worse, when young people lose a spouse it is invariably to some immediate catastrophic event. Something that rips their lover from this world. Quickly and unexpectedly. The long illness is not as common, but happens as well. That path I became intimately familiar with. I have found few widows/er that have experienced a long terminal illness…that tends to be more predominate in the later stages of life. But they do exist and I have had the pleasure to befriend a few of them on this journey.

These paths. They are so different. And yet exactly the same. What I am finding is that the grief is the same. The path to get there different. No matter if you lost your love in one earthshattering moment, or over the course of a month, a year or five. It is the same path. No path is better. No path is easier. Both are a double-edged and filled with regret and loss. Many would always choose their path over another, and I believe rightly so. And it does not matter if you lost your love young or you happily lived a long beautiful life together. Because in reality, we all end up at the same spot. And it sucks no matter which path life led you down...

It is like this damn relentless relay. And we are all on it. There are no winners. No loosers. No one is 'greiving' better than anyone else. We are all just doing it. Everyone is at different legs of the journey. And where we step onto the course of widowhood is different as well. A friend asked me the other day how I could be doing so remarkably well at the 6-month mark, and I did not know what to say. I do not think I am doing extraordinary well. But yet I am doing it. But this was spoken from someone who had lost thier beloved in the blink of an eye. One moment here. The next gone. I may seem to have gotten my shit together and am moving forward....albeit not always steadily and not without many tears and recriminations. But I have found that I spend my days laughing more than I am crying. And that is something. But who is to say how I will feel next week or even tomorrow. Not I. Because I know all too well that this relay continues on and I will continue to stumble, trip and even fall sometimes. I only hope that I will always find the strength to pick myself up once again and brush myself off and continue onwards.

Although I still relive those final months with David. I do not do it as much as I used to. And strangely I am grateful for them. Not to say that any of the pain and indignities that David endured in those final months was fair or even remotely pleasant. But it gave us both time. It gave him time to finish the things he felt important at the time to finish and it gave me time to say goodbye.

It is harsh to say. And it is something I oft never even say out loud. But after the stroke, much of what made David the man he was faded. Yes, he was still acutely and almost inhumanly aware of what was happening and the awful changes occurring in both his body and mind. But there was a disconnect. Things did not always sink in completely. He understood and yet he did not. Yes, he was still my love. But he was dying. And he was the first to admit that he was a shell of his former self. And when everyone went home and there was no one else to ‘keep’ it up for. He would fade. Become disconnected and say and do things that were not always the easiest to experience.

So after that stroke and the inevitable outcome that we both knew was just lurking in the shadows…I think much of David died then. Yes, he kept up the fight. He created moments that would have to last a lifetime. But he was never the same and either was I. It was brutal and horrifying. Because we knew, both of us, that the time had come.

I have tried to explain it. But it sounds cruel and insensitive to those who never had a loved one with a terminal illness who was in the final stages of ‘actively dying.’ But I grieved for him. Because on so many levels, my beautiful husband...My beautiful warrior had already died. His body was still fighting and the remnants of David’s amazingly strong mind was still in there…waging his last battle against that infernal disease. And yes, he was able to do more in those final months than statistically was possible. But so much of what made him David was gone. There would be brief moments of complete connectedness. But sadly, much of that was when people came over. He wanted to appear fine. But once he was safely alone with just Alec and I. All pretenses were gone.

So, I do not know. But sometimes I think that is why maybe I appear further along at the 6-month benchmark in this excruciating journey than some. But I still grieve. I still hurt. Just not as much as before. Because I grieved for David long before he was ever gone.

God, it sounds so horrible and fucked up, but it is true. I grievied heavily in those final months before he even took his last breath. And when that final moment came, it took my breath away. I was numb for a time. But not completely and not for long. I do not know how much numbness I even had to protect myself against the onslaught of grief that came. It was not shocking or surprising. It was the end. And I knew it was coming. Although that knowledge did not make those final moments any easier. It did mean that the whole grief machine was already in overdrive and basically just continued on...

The struggle...

2009-02-14T17:15:00.000-06:00

I feel like I am struggling between two people. The woman I was and the woman I am becoming. The woman I am now. Both are very similar and yet worlds apart. I look at pictures of myself from 3 years ago and that woman is barely recognizable. And I am not talking about the curvier figure or the length of my hair. It goes so much deeper than that. To my core. I am still Skye. I still love to read. Crave a good cup of tea. Love to see, touch and make art. I still marvel at the beauty all around me. But I am different. Skye of a few years ago is gone. She died little by little as David was diagnosed, began treatments and than as she slowly watched her beautiful lover die. She died too.

Everything is different now and yet the same? How is that possible?

I am more confident than I have ever been. I feel stronger and yet the future still terrifies me. I know that I too am a warrior. No, I am not a cancer survivor. But I survived cancer. I survived the havoc is wreaked on David’s body and the destruction is wrought on our life and I am still standing…if only barely. And I will continue to fight. I will continue to beat down that fucker and do everything in my power to help make a difference on this damn planet. For those fighting Cancer and those guardians of hope that care for their loved ones fighting the beast. Or any beast for that matter.

I am here…so I might as well do something constructive with my time. I no longer believe that it is about how we die. We are all going to someday. Sounds harsh, but it is true. We may not know how or when. But it is going to happen. So I am trying to worry less about the end and focus on the journey ahead. Because really, it is all about the journey. It does not matter as much how long or short your time is here on this rock. It is all about what you choose to do with that time. Do you choose to live life to the fullest or curl up and die? Do you choose to fight or be the victim? Do you choose to smile or cry?

And I am learning it is ok to do all of these things and more…all at once. Because as David taught me…it is all about the choice. Everything we do. Everything we perceive. Everything in life. I may not have gotten to choose whether I wanted to be a widow or not. But I can choose what the hell I am going to do about it now that I am. Just like David never chose to get Cancer. But he did choose to continue to “live” despite a terminal diagnosis. He chose not to be the victim despite the shitty cards life dealt him. And I am choosing to follow his example.

I fight on…David’s 'Warrior Queen' as he used to call me. Although it is a struggle and there are some days life just seems too much. Too much pain. Too much of everything. And some days what I would not give to just stop and rest. To find peace in someone’s arms and to feel safe and warm if only for a bit. Not that I should or need to depend on another for peace and strength. But it would be nice when I am feeling so damn fragile and alone…to feel strong arms of protection. To give me strength when I feel like I have none left to give. To feel I could sag against someone’s shoulder and just let my walls down. Be enveloped for a spell. To just have someone stroke my hair and take care of me if only for a while. Does that make me any less strong? Does that make my little feminist mentality all bullshit? I have not a clue. But it is what I feel some days...

Precious archives of our past…

2009-02-09T22:07:00.001-06:00

We used to hate the clutter. And yet we were surrounded by it. Ironic isn’t it? Both David and I were artists, so we tended to keep everything because you never knew when that wire mesh could come in handy with the next art project! We kept other stuff as well, not just the wacky odds-n-ends. I used to give David hell that he was much worse than I. I blogged about it once http://dreamsofawildflower.blogspot.com/2007_05_01_archive.html. But in reality, I think we were both culprits, but just about different things.

And to add to it...we were also nostalgic romantics. So we kept EVERYTHING! In the last few years we had begun going through stuff. Trying to weed out the crap from the important items. Just trying to rein in the chaos. Pare it down a bit. Mind you, nothing we deemed memorabilia was ever tossed. If I coughed on it, Dave kept it and vice versa. We had a long distance romance for 2 ½ years before I even moved up here and married. So we have a mountain of memories. Precious archives of our past. Hundreds upon hundreds of letters, cards, audio tapes…post it notes. Everything. Our 16-year romance.

We have copious amounts of photos too! David used to prop that camera on any flat surface he could find when we were out and about. So amazingly, we have many pictures of the two of us. Not always fabulous shots. But they captured all those beautiful little moments in time. David was playful and passionate about pretty much everything. A quirky combination but it fit him well. And those candid shots at the wackiest of times resonate now with his vitality and playfulness.

But now...all I have are these archives. A blessing. But they are pale in comparisson to him. I have not begun to even touch the surface of them. Many have not been read in years. I know they are there and I am comforted by them. But I just cannot quite bring myself to look at them yet. I came across the calendar he had the year we met. He circled the day we met and chronicled on that calendar everything we did before I went back home. We were not even dating then. But David knew. Knew the moment he saw me. This was it.

I am eternally grateful for these precious momentos of our life and love. Since we were both nostalgic, both lines of communication were kept. So, I have both the letters I sent and the ones he did as well. We also continued to write an abudant amount of letters and cards to one another throughout our 12-year marriage as well. We did not relegate them to holidays only. Some days one would just be sitting on his car seat awaiting him on his drive to work. Others would find their way into my lunch. I have them all. Beautiful…yes. But they do not hold a flame to his warm smile.

As I look around the house, I see beautiful reminders of him everywhere. They make me smile. They comfort me. And they make me cry. The pencil sketch I did of him in our bedroom. Capturing his beautiful body and peaceful way. The cards. The photos. Everything.

Days like these I try to make sense of it all. I can’t comprehend why he had to die so young. And why him? He was my love. And I miss him so. I am searching for an answer I will never find...

But these and so many other questions haunt me every day. How will I go on? How will I survive this? The pain of loosing him some days feels like it is driving me to insanity. A friend once shared with me a traumatic loss she had experienced and how 'now'…when she thinks back, she realizes how she was "totally nuts for awhile there." I can relate completely. When I think back to those first days and weeks...yeah, I was nuts. Completely driven insane. Functioning marginally…but looks are deceiving. Even now I am sure one day I will look back to this impending 6-month mark and think, "Damn…how was I functioning? And how did everyone think I was ok?" I am not, really. I am alive. I am surviving. I am not crying every day anymore. I do not feel like dying every second of every day anymore. But no. I am not really ok. My heart is torn beyond recognition. I am a shell at the moment. Someday I hope to fill this husk…but right now there is nothing to fill it with.

This is my reality...

2009-02-01T23:06:00.000-06:00

Ever since David died I have worn his wedding band alongside mine...It seemed only appropriate. David was not a big man in stature. He had a small frame and amazingly enough we had the same size hands.

We ended up going with identical bands. I was never one for big diamonds. What would I have done with a big rock on my finger? It would have gotten caught on everything and probably would not have been treated with the delicacy it deserved…seeing as I tend to do so much with my hands. I am always sticking my hands in something. Artwork. Home Renovation. Gardening. A big ring was just not me. And for David…most “male” bands tended to dwarf his fingers and they always looked absurdly large and cumbersome. So we ended up with these bands. And after he died, I put it on. As I had done so many times before. Every time he had been hospitalized and unable to wear it, I would slip it on and keep it close to me until his safe return home. But this time, he would not be returning home. It seemed fitting. Resting side by side on my finger, as we should have been.

But now as I continue to loose weight, they no longer fit. I have tried various contraptions to keep them on, but they are just getting too large for my fingers. Or my fingers are too small? And now every time I wash my hands, they fly off. It is time. I feel it. Before they get lost…which would break my heart. It is time to move them. They now reside on my right hand.

My left hand feels awkward and exposed. I have had a ring on that finger for 14 years. It seems wrong…my finger so bare. But all of this is so wrong! It is so hard to explain, but it feels like I went outside in the dead of winter. And as I stepped onto the snow, I slipped my jacket off. But I am wearing nothing underneath, and now I am standing naked in the snow. Cold and vulnerable.

Those rings. They were symbols of our love. Symbolic of our marriage. Symbolic of so much. But I am no longer married. I am no longer someone’s wife. And I am no longer someone lover.

How is that possible? It never occurred to me that there would be any other life for me. David was always what I thought my future would be. I was happy. We had a great love. We would grow old together. Travel. Have a lifetime of adventures. We always knew we were fortunate to have found each other so young, but we never knew there was a time limit. We thought we had a lifetime. Unfortunately his lifetime was so much shorter than either of us ever anticipated. What the hell happened?

I hate this. I loved being married. I loved being David’s wife. And I loved being his lover. And now I am so damn lost and alone. Looking into a future full of uncertainty. And now my hand reflects this, for the world to see. But this is the reality of it. This hellish nightmare that just keeps going on. So unreal. And yet this is it. This is my reality...

The ugly remnants of Cancer…

2009-01-24T22:35:00.000-06:00

They are everywhere. The little reminders of Cancer. How it changed our life. How it slowly killed his body. The beast itself is now gone, at least in David’s body, but the price we paid was high. We could never quite beat it down, and in the end the only thing that silenced it was when it finally silenced David. Irrevocably. And now I have all of these damn signposts of our battle with the infernal disease.

The shower curtain rod that curves outward, creating more room in the tub, which made bathing David easier after the stroke. The blasted ramp that juts off my porch. The ramp itself was impeccably done...a couple guys from work just showed up one day and built it. It is the nicest damn ramp I have ever seen...looks better than my porch that is in serious need of replacement. And yet, it is ugly. It may be a nice wood walkway to some. But to me it is a reminder of what the Cancer did to David. Of how he lost his mobility after the stroke, and then as he finally began to recover from the stroke, how that tumor came back and took away his freedom once again. And as that insidious mass began to grow and press on his brain, David’s strength and motor skills on his left side started to wane once again. And how in the end he was stuck in the wheel chair that he hated so much.

Then there is the cane. God how he hated that thing. And as he became more and more dependant on it, Alec became more fascinated with it. He was three and a half...so he was mimicking david. He used to walk around the house with it. It made David insane. And I remember one day, after Alec was in bed, david shaking that cane and saying he wanted that cane gone when he was. He did not want it lying about reminding Alec of him like this. He wanted Alec to remember him in his vitality. The playful, attentive dad that used to pick him up and throw to the couch and than tickle him unmercifully. He did not want to be remembered like that. What he called, "A shell of his former self."

There are so many things. All sitting around the house. Hidden in the basement or the garage. Leering at me. The bathing bench. The commode. The cane. The gait belts. Oh, and I must not forget the wheelchair. Not his nice comfy one he had near the end. The insurance company felt that since his tumor was terminal, there was no need to purchase it, so we just rented the cushy one. At the time I was horrified. Basically they were saying no need to purchase it, when we could just rent the damn thing monthly until David was either completely bedridden or dead. And yet, in reality, it was probably a good thing. What use do I have for a wheelchair specially configured for David? What would I do with it? It would have just sat around rotting like everything else. So mercifully, that is gone. But his transport chair is still here. The one we had to buy before they realized that even when and if he did recover from the stroke, the bloody tumor was going to do its business and inevitably take way his strength again...and that he should have something more comfortable and easier to maneuver. Mind you, David was a powerhouse and his use of the wheelchair was confined to the end. He was mobile for much longer than they anticipated and defied what statistically and medically his body should have been doing. But he could not bypass it completely and we did end up using it in the final months.

So, all of the crap just sits here. I plan to donate them. The equipment that is littering the dark corners of our basement still have a purpose and can help others. I know how insane medical bills can be and if someone is in need of this equipment, than odds are they have all sorts of other medical bills as well. I am looking into a donation program that specifically benefits patients in need. Although I would love to just go out there and beat the shit out of the wheelchair with a baseball bat, it would not be productive. It might make me feel better for a brief moment, but I know that the equipment can serve its purpose so much better by helping someone else in need with disabilities. And although transitory as it might be, beating the crap out of the equipment would not have any long satisfactory effects.

Running on fumes...

2009-01-18T23:09:00.001-06:00

The last few days were interesting, to put it mildly. This stomach flu took my ass down. Not surprising considering I have been running on fumes for months. Actually probably much longer than that. I have been running for two and a half years now. I find it ironic that I could manage all of David’s medications, his care, raising our son and all the other crazy stuff that goes with life. And yet, taking care of myself always ended up on the bottom of my list.

Lately I thought I was doing so much better. I made sure I was getting a reasonable amount of sleep. Eating healthy. Began doing meditation once again. But despite all that, I think my body just had too much. Too much of everything. Loosing David was the final straw. Grief is taxing on the body. During the 10-week grief workshop I attended, I learned that loosing a spouse is one of the single most traumatic events a body can experience. No shit!? Really?

No, it is not as bad as having the beast itself I am certain. But non-the-less, bereavement takes its toll on anyone who has lost someone they love. I have been on empty far too long and my body is now beginning to show physically what has been going on internally for the last couple years. I rarely got sick after David was diagnosed. Somehow I knew I could not, so for the most part I didn't. And now that he is gone I have gotten a cold every few weeks. And now the flu. Absolutely Lovely...

Friday I was sick most of the night and Saturday morning I realized it was going to be quite difficult to care for the little guy, seeing as much of my morning was spent in the bathroom. So I called my In-Laws and they thankfully took Alec for the day and the night. I hated to have him go. Although I was laughing and making jokes about my gurgly stomach, you could tell that he was still disconcerted. Mommy was sick. He was not terrified, which is an improvement over 5-months ago. Just a little off kilter. But he went over there and when I checked in periodically, he was having a delightfully fun afternoon. The day was quiet and the night even more so. It was the first night Alec has not been here since David died. I can not put into words how quiet and lonely that night was. And how painfully aware I was of David’s absence and the void he has left in my life…

Something good did come out of this whole messy experience. I napped. Boy did I nap. I slept three hours Friday and took a two hour nap Saturday. I have not napped for that long in years…not since some time before that crappy day back in June 2006. And obviously my body needed it. I had brief moments of guilt. How could I sleep that long? There is always so much to do. But in reality, I knew none of that mattered. The paperwork. The bills. All the life crap will continue to be there. It is not going anywhere unfortunately, but I realized that I needed to set all of that aside and just let my body rest. Recover. Heal. And I did. I let my body try to mend and spent the day being sick and doing absolutely nothing productive. How insanely remarkable!

I think I will need to do more of this in the coming months. Not being sick. But taking little moments to take care of myself. I tend to run around like a banshee once I put Alec down for the night. Bills. Paperwork. House. All that life stuff I used to share with David, but now must be taken care of by me. Recently I began going to bed a little earlier to read and unwind a bit. I think that is a good start, but I think that I need to take a bit more time now. Not nightly, that would be impossible. But maybe even once a week or even once every two weeks. Just 3 hours for myself after Alec goes to sleep for the night. Maybe read more. Maybe watch some Doctor Who. Maybe even begin making art again someday. But I need to do something I enjoy. I cannot keep going at this pace. If I want to continue to be healthy and care for Alec, I need to start taking better care of myself...long term. And as I have been told by more than a few people, I cannot be wonder woman all the time...although I would like to be. Some days I just need to be Skye.

Silence…

2009-01-16T22:09:00.000-06:00

Last night I came down with something. Who knows if it was a 24-flu thing or what. Nothing tragic but I was sick most of the night. And I realized at some point around 2 am…how very alone I was. I am the sole parent now. There is no one to pick up the slack while I am sick. When Alec woke up, no matter how I was feeling, I was going to have to get up and take care of him. I also worried, what happens if he wakes up at some point during the night? He rarely does, but it happens periodically. And then what the hell was I going to do? I was in no state to walk upstairs let alone be able to take care of him if he needed me. Ah, welcome to single parenthood. I know this is not a singular event. Single parents go through this all the time. It was just the first time I was faced with this particular scenario on my own.

The night was a long one. I felt so fragile and alone. Curled up in a ball on the couch. Oh, and that brought back difficult memories as well. I had not slept there since back in July, when David became too weak to take the stairs and I made a cozy little space for him in our studio downstairs. Things had progressed rather suddenly and I had not gotten a second bed for downstairs yet, so I slept on the couch so I could be close to him and attend to anything he needed in the night.

So last night was difficult on many levels. And yet, I was so sick they were just transitory thoughts…flitting through my head. But I did not think about it for long. I felt too crappy and it was too much. So I just shut it off and prayed that when Alec woke up in the morning I would be through the worst of it and be able to take care of him. Alec gets very unsettled if anyone is sick that he cares about. And if you really look like shit, it scares him. The leap in his little mind from sick to having Cancer is a short one. It is understandable and he has gotten progressively less twitchy about it as the months go on, which is good.

But he slept deep and sound. Totally oblivious that I had been up all night. And I was able to get up with him and get him ready and dropped off at Grandma and Grandpa’s before I got sick again.

I thought the night was quiet. Today was worse. I did not have the static or soothing sound of Alec's breathing on the monitor to comfort me. There was just me. The silence was maddening and a brutal reminder that no one was here to take care of me. To make me a pot of tea. To wrap me in a blanket or just sit near me...

I love the person I have become. That I am more indepedant and know I can conquer anything I put my mind to. And yet days like these, when I feel sick and alone, what I would not give to have someone make me a cup of tea. Or brush the hair out of my face. Or just say they loved me…even though I looked like total shit. It is the little things. But the things I miss...

Seriously?

2009-01-10T22:31:00.000-06:00

Recently I had a doctor’s appointment. Nothing exciting, just your run of the mill stuff. It was shortly after I had been in for the whole lump debacle. It was a different doctor with different nurses, but within the same office.

As I walked in, I felt all those old emotions returning. Not quite as strong as before. But still there. The memories of David. The concerns. The sadness. I was feeling quiet and a bit lost. As I was taken back to the exam room, the nurse who was obviously having a bad day began a constant stream of complaints. She was whining about how awful her day was going. How no one was doing their jobs correctly. She is left to fix everything and it was just such a burden for her. Someone kept moving her clip board and other such nonsense that I can not recall anymore. But it was inconsequential. The world was not ending. She did not have cancer. She was just pissy because she was having what she considered a bad day. I would love to have had a day like that. It sounded like a delightful day compared to the hell I have been through and continue to be in. But that is irrelevant really. And who knows what other shit she may be surviving on her own path in life.

But what got me was this. We went into the office. She sat down and began checking over my chart. Confirming there had been no changes. Understandable. No biggie. As she continued to check my chart, her litany of complaints about her day and co-workers continued. Whatever…

And then she got to it. She asked me if I was still currently on birth control. I said no. Then she asked, “Well, are you sexually active?” Again I answered no. No details. Just no. You would think at this point she would have updated the god damn chart and continued on with the appointment. Because odds are, if a 35 year old woman comes into your office and she is now no longer on birth control or sexually active… odds are she is not happy about it …and odds are there is a pretty big damn reason. Maybe it is due to breakup. Divorce. Some form of abuse. Or in my case death. But there is a reason. But she was not thinking about me or why this change might have possibly occurred. She just decided to make a point and in a very accusatory tone said, “Well, your chart says here that LAST week you were still on birth control and LAST week you were still sexually active.” I said, “Well…I was not.” That should have been the end of it. But she would not let it go. She had to make a point that obviously other staff members were not doing their jobs and my chart was living proof of that. So, now she was left with the burden of it. And then she asked me again…as she said “To confirm, so that it is updated properly.” Confirm my ass. She was just trying to hammer in her point. Like I cared that someone else was not doing their job. And honestly, I know the nurse who had updated my chart the previous week and she knew my situation. She knew my pain. And she was extremely kind. She gave me hugs and cried with me. And amongst reminiscing about David, she ended up not revising my chart. Not a tragedy. But this woman knew nothing.

But even if she had not…she should have realized this was a situation I was not happy about. By my actions alone. Let alone if she stopped her diatribe to look at me. I must have looked mortified at that point. But she continued on blindly and when she asked me the second time to confirm it…that was it. My anger at her complete lack of compassion boiled over and with my last ounce of strength I sat up straight in the chair. Looked her squarely in the eyes and said, “No…I am no longer on birth control. And NO, seeing as my husband just died. I am not sexually active.”

Well, that shut her up. Finally. And a look of horror crossed her face as she tilted her head and recounted the last five minutes of our conversation. And yet, even though she seemed to have realized what an ass she had been, she did not apologize. She stood up, said gruffly the doctor would be in shortly and stomped out of the room. But I think I made my point.

My resolve shattered and by the time the doctor came in I was sobbing. But I did it, I kept my shit together long enough to make my point and make her re-evaluate her own actions. And hopefully next time she is having a bad day, she will not take it out on the patient. And maybe next time she will take a moment to step back from her own life and take into consideration the person sitting before her. Maybe not. It will be her choice…

Grieving...

2008-12-31T10:00:00.001-06:00

People have recently come into my life that walk a similar path as mine. It has been good to talk about all the crap that we endure everyday. It makes me feel less alone and not quite so crazy!

And someone told me the other day that I was doing well, so much better than she had at 4+ months. But I reminded her…all our paths our different. And although I believe we all have distinct similarities in grieving. The process is unique to each of us. Also, I think it is different if you lost your loved one unexpectedly or through a long, drawn out illness. Neither way is better. It is just different. The griving is still similar, but the path to that grief is different.

So, although David’s battle with Cancer was hell. For me, some gifts came out of it. We had over 2 years to work through some of this together. That was always when we did our best work. Together. He was diagnosed with a terminal brain tumor in June 2006. No…we did not give up the battle then. But I think we both began processing some of this, if only in tiny increments. And as everything progressed…David began to prepare both him and me of the possible and unfortunately inevitable outcome. He talked about the future. My future. And my life without him. A dear friend recently told me that David was so brave facing death because he wanted to come to terms with it quickly. He needed to because he was completely focused on Alec and I…and doing everything in his power to make this loss as bearable as possible. Amazing. He was dying and yet even in his final weeks he was consumed with final preparations for Alec and I.

He went shopping for Alec and bought an insane amount of toys ranging in age appropriateness from 3 to 9. Thus, ensuring that I would have gifts for Alec that daddy had specifically bought for him for many years to come. He did videos as well for both Alec and I and he also wrote little cards for me. This was all post-stroke…so sometimes they are a tad wackier than normal. But they are still David. And they are beautiful. I have been opening the cards slowly. Tending to save them for when I am having a dreadfully dark day. Sometimes they lift my spirits. Sometimes I cry and cry. But they always make me smile, even amongst the tears. Because I know I was loved. So deeply. And love like that transcends everything. He still loves me even now. And I him. Death can not separate us…I think we will forever be connected.

But David left me other gifts as well. At the time I did not realize how special or unique they were. But now I do. David used to talk about once he was gone frequently. Especially in his final months. And he would talk about how I had to live. Live for the both of us. He wanted me to be happy and enjoy life. Enjoy it for both of us since he could not...and he wanted me to move on. Someday. I used to get so upset when he would talk to me about finding someone someday to make me happy. That he did not want me to spend my remaining years alone. I hated it. But now, I realize how amazingly much he loved me. And how selfless he was. He said he knew he would always be my love and soulmate…but that I would be ok.

I remember one night sitting on the couch with him…having a cup of tea. And out of the blue he looked at me and said that someday when I found someone else who could make me smile...to enjoy it. But never to compare another man to him. “They broke the mold with me,” he said…”Just like they broke the mold with you my love. There will never be another me out there and don’t go looking for it. You will never find it. And it would be unfair to any man to compare him to me. It would not be fair to you or him. You will find something different. And that is ok. Be happy.” I wanted to scream. I wanted him to stop talking about when he was gone. I wanted to stop thinking about the fact that he was dying. That soon I would be alone. That albeit death is inevitable, it was coming much earlier for him than I had ever expected. How could he be so calm? I remember how I cried that night. God I cried. How could he talk about me moving on? How could he talk about me enjoying life again someday? With or without someone.

But now, knowing how very much he wanted me to be happy…to live…is one of the main reasons I get up everyday. I keep moving forward and do not let myself get mired down in all the pain and loss because of him.

But I digress; a friend said I was doing so well for only being 4-months out. But really, I began grieving long ago. It is hard to explain, although after speaking to a few widows/ers who lost their loved ones to a prolonged illness…it is not as crazy or uncommon as I thought. I probably began grieving a teeny bit way back in June of 2006. And I know that in April of this year, after the final surgery and subsequent stroke I began grieving heavily. Not to say that I stopped living life and making the most of every precious moment with David. But we knew. We both knew the slippery slope we were on. And once we decided to stop all treatments back in June…it became not an issue of if…but when. And I cried myself to sleep almost every night.

So, maybe I am doing well for being 4+ months out. Although, I do not feel like it. I have been in hell and continue to be. But I began grieving long before David physically died...Strange and fucked up as it may be. It is just how it is. And as I slowly watched David’s body shut down…I grieved because I could physically see him slowly slipping away from me. And there was not a damn thing I could do. Nothing.

God how I hate Cancer. I hate all of it. But I am grateful that we had the precious time to say our good byes. David knew I loved him and he me. We were able to talk about the future and his wishes for Alec and I. I was able to care for him. Love him. And do everything in my power to make many of his wishes a reality during his remaining time on this earth. He was never alone and he knew I loved him. Adored him. And he knew I would be there to the very end and do whatever I had to...to make sure he was comfortable, safe and warm. And I was with him, stroking his arm as he took his last breath. He did not die alone. He died knowing he was loved. It may not bring me comfort…but it has given me some peace…even if it is only brief and fleeting.

I will try to do all the things David wanted me to. Live. Play. Make art. Travel. Much will be for him…and maybe someday I will do it for myself as well. But I will make him proud. And strangely enough, I feel as if he is always with me and in some surreal way experiencing the joy and future with me. He will always be with me and someday when I get off this ride. I won’t have to tell him of all of the adventures I had, because he will have been there with me the whole time…experiencing them with me too.

At a loss for words...

2008-12-29T13:50:00.000-06:00

I have been strangely silent the last couple days. Anyone who knows me…know this is a complete anomaly. I tend to talk, and talk, and talk. Damn I can be chatty some days! Most days to be honest. But I have to admit…this last week was difficult. It was a very dark time for me filled with loss, regret, and sadness. And honestly, I planned to blog Christmas Eve, but I could not. Then I planned to Christmas day and still I was unable to find the words. I just sat at my computer, wondering what the hell to say? And nothing came. So, I knew it must not be time yet. Sometimes I know instantly what my post will be about, and sometimes it rolls around in my brain for days. But many days it just comes to me. And more often than not, it takes a decidedly different turn than I originally intended when I began writing the post.

Blogging is extremely cathartic to me. I sit down and the words just flow out of me. A friend once said it is as if I open a vein and just bleed onto the paper. You guys get to see it all. I tend not to edit anything involving my emotions. You get to see me in all my Technicolor beauty. Flaws, angst and all. But it’s honest. It’s raw. It’s me. And since no words came to me…I felt that I was not ready to let them go. Because after I blog, more often than not, I feel a huge sense of relief. Not to say that sometimes as I write I do not cry. I Cry. Damn do I cry. And sometimes I have to stop mid-thought and have a good long sob. But the act of writing. Of bleeding onto the paper (or keyboard) releases my pain…my fears. It releases some of the crap swirling around in my heart. Blackening my soul. And by this act of releasing, somehow it makes room for hope and joy in my life.

But even now I can not seem to find the words for Christmas. It is what it was. Some happy moments. Some sad. Some heartbreakingly lonely. All I can say is that I survived it...

Alec had a wondrous day filled with lights, play and gift opening. I could not have asked for more. He loved the tree, the lights, the ornaments. Santa came and delivered toys. Alec was deliriously happy. He was able to open a few gifts that David had bought him before he died...albeit they made Alec "a little sad because he missed daddy." And it was a bit confusing that daddy bought gifts but was not here to give them to him. But later he told someone as he showed them a book David had given him...that this was daddies gift to him, and that he had bought it before he died. So, somewhere in there he gets it. If at least only partially...

So. Another holiday down and only one more to go before we can put this year to bed. I am ready. I am so unbelievably ready. Not that I think that all will be well in 2009, not by a longshot. It will be different. No more doctor appointments. No more watching the slow progression of the tumor. No more cancer. We will just continue to survive the aftermath of Cancer's destructive wake. And somehow we will continue to move forward...

Holiday Wishes...

2008-12-26T22:48:00.002-06:00

Just one of those days...

2008-12-23T10:00:00.001-06:00

I am unsure why…but Saturday was hard. Not that everyday is not hellishly difficult, but somedays everything seems closer to the surface. As if someone has scraped a blade across my open wounds, opening up everything again. The pain at those moments is so strong as it threatens to overtake me once again. Saturday was one of those days and every second I felt on the verge of tears. And the sadness just wrapped around me like a blanket...and yet it gave no comfort or warmth. All I could feel was the weight of it, pulling me down. Dragging at me.

Everything reminded me of David. Everything seemed to accentuate the empty space in my life. The hole in my heart. And some days, especially days like Saturday, I wonder how I can move about and function when my heart is so shredded and torn. And many days I wonder how I make it through at all.

Why did everything seem so much more heightened? Is it the damnable holidays? The overcast skies? The snow everywhere…keeping everything cold and unmoving? I have not a clue. But damn I miss you my love. I look at your pictures and I can remember how you moved, your big beautiful smile, your wonderful hands, and the way you had so much life in you. I keep waiting to hear you come bounding down the stairs like you had so many times before. So exhuberant. So full of life.

And days like these. Everyday really. I am reminded by everything that surrounds me…and how very much I miss you. I begin to single out something I miss, and then really. It is everything. But basically I miss you loving me and how I could see so much love and passion in you eyes when you looked at me. I miss you my love and I do not know what I am going to do without you. I miss my best friend. My lover. And I feel like a ball of sadness and longing.

I am so damn lonely. Life was so much fun with you and I now I just haven’t a clue what to do. We shared everything and spent basically every waking moment together, except when we were at work. And now. Now, it is so damn quiet. I miss your laugh and your continuous banter. Your wise perspective on things…you were always so grounded and stoic. You rarely became ruffled and had such a wise, strong soul. The silence now is almost suffocating at times and I swear it is going to kill me.

I would give anything to just have you hold me again. To curl up in your arms and have you stroke my hair and tell me everything is going to be ok again. But it won’t, will it? It will never be ok again. You are gone and I am left here to live what feels like a half-life. I know that I was so lucky to have had you in my life. We had a beautiful, extraordinary love. But damn, I wish I could have had you here so much longer. I am so lost without you my love…

Catalyst for Change…

2008-12-13T22:20:00.002-06:00

I know I may only be trying to justify David’s death…and maybe I want it to mean something more than my husband had a brain tumor and died. But I also believe that David fought so damn hard to live, it would be a disservice to him to curl up in a ball and give up. David fought to live, he fought for us. But it was even more than that.

David changed so many people. And I for one believe that us just being here, our mere existence, our interactions with people…we all have the capacity to change the world. And many of us do it without even knowing it. And I believe that David did change the world. And I also believe our love did as well. It’s like dropping a pebble in a pond. The ripples will go on forever...

David donated his body to the Neurology department in hopes that someday another family would not have to go through what we did. And who knows, that selfless act may be instrumental in finding a way to better treat or even cure Cancer. We will never know. But I do know that all the things we do in this world have the ability to mold and shape the future and the people surrounding us.

And I hope to be part of that someday. David’s death has brought more focus into my life. I feel like it was a catalyst that has propelled me forward…into a new arena I never expected to be in. I had always wanted to do something. Make my mark on the work persea…but I never had a philanthropy. I have since learned, you do not choose your cause. Your cause chooses you.

So, someday I hope to be the change I want to see in the world. Through experience, unfortunately I have come to learn that the system is not prepared for situations like ours. The system does not account for young caregivers. They do not expect you to develop a serious illness, disability or even worse…a terminal illness. And thus, there is not much support out there when you are going through it…especially during the time where the support is so imperative for survival. I will not go into one of my long diatribes here. Many of you who know me, know where I stand on this. But I do hope that someday I will be able to create or do something that will help other young caregivers out there. I believe that opening up a dialog on these issues is important. I also wonder what else I may do for caregivers or widow/ers in the future. This is no where near what I ever expected, but I am forever changed by this experience and I want to help others someday as well. Help them through the darkness. Let them know that they are not alone. Help them to navigate the mountains of paperwork. Direct them to where to find the support that is hidden amongst all the crap. And make them realize that there is always hope, although even now I do not always feel it. It is a dream. And something I will not be able to do any time in the near future. I am grieving and would not be much good to someone else going through what I just recently survived. But someday...maybe.

This all sounds fabulously optimistic during the light of day, but to be honest...in the dark I am a lonely, scared widow who is just trying to make it through another night.

But even in my darker hours, I know I can be whatever I want and become whatever I need. I just need to believe.
David taught me that…
David believed in me.

The Lump…

2008-12-04T22:21:00.002-06:00

I will begin this post by saying that I am fine. But the last week was a tad more exciting that I had hoped. Amongst all of the Thanksgiving angst…I guess the universe decided to add one more log to the already sizable fire I have going. No…scratch that. It is not just a fire. It is a damn pyre at this point.

Last Tuesday night I found a lump at the base of my neck…just below my skull. I was sitting there working on the computer, resting my hand on my head. And with my mounting exhaustion and tension…I absentmindedly rubbed the back of my neck. Well, lo and behold…my head was at such an angle that my hand ran over a lump. At first I thought maybe it was just tension, but as I continued to poke and prod the damn thing. No way in hell it was a muscle. It felt extremely foreign. It was round, hard and about the size of a marble. Well, you can guess the multitude of emotions that went through my head. And yes, I did panic. Because the leap to thoughts of Cancer is small. Really a hop at best. I freaked out. But of course it was Tuesday night, so there was not much else I could do.

The next day I phoned my primary and she saw me immediately. I love my primary doctor. She was David’s and continues to be mine. Although I admit, the office has many painful memories. And whenever I walk in, I am flooded by the countless appointments and subsequent hospitalizations that occurred during the C-dif period and the numerous other crazy things that occurred during the course of treatments. But it is worth it. Because I have a doctor who is not only proactive, kind and knowledgable. She knows my history. She knows what I went through and she knew David. And that, I would not be able to find any place else. She watched the slow progression of the tumor and the hell it put David’s body through. And she also watched me. Made sure I was taking care of myself, the forgotten caregiver. And after David passed, she continued to check up on me. We developed a mutual respect... I for her experience and compassion and she for the path I walked with what she called “strength.” So, when I showed up in her office, she knew how very terrifying this experience was. She knew that everything was so raw right now and that I was so fragile. And she looked at it and said, “If I had to bet money, I would say this is nothing. Probably an inflamed node.” But she also knew how very concerned I was and she said we could wait to see if it grew…and then testing would obviously be done. But due to my history with David, being so understandably scared, and now being Alec’s sole parent, she felt I should have a CT scan done. And then she looked me in the eyes and said, "This is probably nothing, but if it isn’t, we will figure out a treatment and you will get through this! I know you will. You have always been strong and we’ll get through this." Shit. I do not want to get through anything else. I am done getting through stuff. I still have a mound of stuff both physically and emotionally I must get through. I do not need any more life lessons at the moment. I am all full.

But unfortunately, as we have all painfully learned. We do not get to choose our life lessons. They just happen. Our only choice is how we face them. They got me in for the following Monday and I had the weekend to think long and hard about this new curve ball. And as I sat there at night, fingering that maddening lump. I came to many realizations. One being that although there are many days I do not always want to be sitting on this rock orbiting the sun, I am here. And although I may not always want to be...I am alive. And yet, faced with the possibility of Cancer and even my own mortality. I came to the realization that no matter how very much I miss David and how much I want to be with him basically every waking second. My time here is not done. For whatever reason, hell if I know right now, I am alive and I believe I have much left to do in this life. And I also realized that I not only wanted to live for Alec, which lately has been the solitary reason. But I wanted to live for myself as well. And as I sat there I began steeling myself for the next battle. I could feel the tension and adrenaline building ever so slowly. And although it would be so much easier and less painful to just curl up into a ball and fade away, there was no way in hell I was going to do that. It goes against everything I am and have become. And I pictured myself getting into a fighting stance, fists clenched. And as I stood there in my mind, I flicked my fingers as if egging the universe on and screamed, “Bring it on bitch.” Because this was one battle I was not giving up. I watched David battle to the very end. He was a warrior and I learned from the best. And if she wanted to tango, I would take her ass down! Mind you, these were my better moments. There were also moments in the following four days where I let my fear best me and I worried about my future, Cancer and the irreparable damage it would do to Alec to see yet another parent go through treatments.

But Monday came and I walked the halls of Froedtert once more. Only this time as a patient. That sucked. Everything is just too damn fresh and raw. I sat in the Radiology waiting room for my CT Scan. The same waiting room I had sat a billion times before with David. Only this time, they were coming for me. And even more painfully, David was not there to hold my hand. That was the crux of it. David was not there. I was alone and fearing the possibility of going through treatments without my husband, my pillar of strength.

And as I walked into that room, the fear took me. I looked at that machine, wondering if this was one of the rooms David had been in. One of the machines he had been scanned by. Odds are he had to have been in it at least once. We were there almost every month. And as they laid me down on the table I lost it...I began crying and just could not stop. The ladies thought I was fearful about the scan and somehow I sobbed out something about David, scans, brain tumors and that my husband just died of one. The look of discomfort on their faces was clear and the tension in the room went up about 1200 notches. As they left to begin the initial scan, I closed my eyes and began a mental dialog with David. And as I was conveyed into the machine, a calm came over me. The infernal machine began to spin and clank around my head, but I was able to lay completely still, as I needed to be to get the pictures taken properly. The fear was washed away in an instant, to be replaced by a stillness. Peace. Mere seconds before I was a mess and then this? But, I felt David there so strong...so close. His presence always had such a calming affect on me, and I guess although he may different now his presence still has the power to heal me and sooth my aching soul.

I walked out of there and met up with a dear friend who, due to snow complications, met me in the waiting room after the scan was over. We decided to get out of there, go and get a cup of coffee and begin the waiting game. Thankfully I only had to wait two days. This Wednesday I received the results. It is some sort of subcutaneous filled node thing. An inflamed node that may take forever to go away and I will need to keep an eye on it in case it does something funny or gets larger. But it is not a tumor. It does not even need to be biopsied. And most importantly of all…I do not have Cancer.

So. Here we are once again. Yet another unsolicited life lesson. But at least through all of this I discovered that no matter how much pain and loss I may feel everyday. It still has not broken me. I am not going to curl up into a ball…no matter how appealing it may be some days. I am here to do something and someday I will figure out what that is. And that I will continue to live for not only Alec and David. But for myself…

Stuffing…

2008-11-27T21:50:00.001-06:00

Well I made it. My first holiday without David. Suffice to say, it was one hell of a roller coaster ride. The morning was the usual routine. Honestly, it did not even really feel like Thanksgiving. I was not cooking a meal here, so the house didn’t have that Thanksgiving smell or the usual hustle and bustle it always had. David was always the turkey guy and he would be flying around the kitchen, getting this and that ready. The kitchen would be a myriad of smells and sounds. This morning, the kitchen was sadly silent…

But it did not stay that way for long. I was having Thanksgiving over at the In-laws and was in charge of making my stuffing. David loved that stuffing. I used to have to make a double batch, so he could enjoy it for an entire week. And he would eat it every damn day, never tiring of it. At first I thought it would be hard to make it again, because it became so quintessentially David during the holidays. He would come up with any excuse to make it, from now through December....and as many times as possible. And as I began, the smell reminded me so much of him. But it felt kind of good to be chopping away at something. Continuing traditions. Moving forward. And as I cooked, I actually smiled. Because as I looked around, I had dirtied a billion dishes to make that one pan of stuffing. And I remembered how it used to make David absolutely insane that I could dirty so many dishes for one meal…let alone one mere dish. And I laughed. And as I cut up the onion, I pulled out one of his latest contraptions to help dice up the onion quickly. David was always all about the efficiency and making everything as easy as possible. He was like that before cancer, and even more so after his diagnosis. His thought was that there is no use wasting time doing menial tasks when you could streamline or buy a tool that could make it faster and easier! And funnily enough, it did. It actually worked, and that got a smile out of me as well. And I thought to myself, maybe this day isn’t going to be as hellish as I originally thought it was going to be…

Yeah, not likely. I keep forgetting that grief is like a river that ebbs and flows continually. And you never know when you’re going to hit waves or worse yet slam into rocks. Today was no different. Not shortly after feeling like I may actually survive this day without the tidal wave of pain or tears. I was knocked down once again. Alec had a mini-meltdown in the morning after talking to Nana, who just recently returned home. Alec is having one hell of a time transitioning to her departure. He is unable to differentiate between going home, or away for a while and death. For him, it is all one and the same. So, he tends to refuse to talk to her since she left and also talks less about David as well. Not surprising I guess. Regressions should be expected and are part and parcel to this whole childhood grief thing. Two steps forward, one step back. But damn it sucks. To see the fear in his eyes. So terrified that someone else he loves is going to leave him. It breaks the heart. So, as I am talking with Nana he basically gets hysterical and tells me we have to stop talking to her because it is not “fun.” I asked him why it wasn’t fun, and he says, “because it makes him sad.” Can’t argue with that, I guess. And I am still continually amazed sometimes at how well he can express himself for an almost 4-year old boy. But we got through that moment and then went over to the In-laws to begin the next leg of this seemingly endless day.

That was tough. Tougher than I ever imagined. That house. God there are so many memories there…so many amazing moments. And my heart just aches. He lived with his parents when we met, so our courtship was there. And then the first couple months of our marriage as well, before we got our first apartment. And as I roamed around the house, the memories just hit me like a ton of bricks. And the crazy thing is, I am there twice a week to pick up Alec because they watch him while I am at work. And yet usually it is run in, grab the kid and then run home to get dinner, bath and night-night in. But today was different. I was there. For hours. And the memories surrounded me like a blanket. They were so wonderful and warm. And then as I became lulled by their warmth…they dug in and ripped my heart out. Everywhere I looked there were memories of us staying up late watching movies, having tea by the fireplace, long walks, long make out sessions, and you can imagine the rest. The start of our new life together, and then all the subsequent 16 years of holidays, celebrations, and all of the other little precious moments that make up our life. It was all there. And as I looked out the leaded glass window, I could picture with such clarity Dave flying down the driveway like he always used to. He was so excited and happy to come home to me. He would fly in and whip out of his car like a banshee and come running into the house to see me. His face would be alight with so much love and life. And he would give me the most tender and passionate kiss and then he would grab my hand and we would be off doing whatever crazy thing we had planned for the night. Those memories are so beautiful. And as I stood there staring out the window, the pain just washed over me. The desperate longing and sadness. I missed him so much I swear my heart was going to explode. And then behind me I heard this toy start making music. For no apparent reason. I was standing alone in that room and as my mind was drowning in one of those dark grieving moments…I believe it was David just saying, “Hey, babe. I’m here. You’re not alone my love…even though you can not see me.” I turned around and smiled. I could just feel him there. The toy did not make the noise again and I am not even sure how how it did it to begin with. But it does not matter. Because I believe my love was just reminding me that I was not alone, no matter how isolated and sad I may feel. But god how I miss him.

It is different now...

2008-11-22T17:00:00.001-06:00

Food doesn’t hold its sway on me the way it once did. Some of it is sadness, sure. And some of it is something altogether different. Are my eating changes a bad thing? Not necessarily. I eat three meals a day, for those of you that have expressed concern. But my portions are smaller, I rarely snack much, and treats are almost non-existent. This isn’t a bad thing. I am still eating fruits, vegetables, whole grains and trying to stay relatively true to all the dietary changes we made when David was diagnosed. We began living a healthier lifestyle then and I continue to do so now. I have become even more twitchier about some foods, if that is even possible.

But I know that some of you worry. The weight loss has slowed down. Honestly. Do I miss my bodacious girls I once had, most definitely, but the gerbils are happy (See The slow progression... for clarification) and now they probably not only have room to have a spot of tea…but they could have a whole damn squash game in there as well. Does it bother me? Sometimes. But my body is just a reflection of yet another change in my life. But otherwise, I am happy to have lost the weight. I had been trying to do it for years and having a husband with the metabolism of a hummingbird who could eat entire ROWS of brownies in one sitting certainly didn’t help the cause much.

So, like everything else in my life, things have changed. I look at food differently now. It does not have the affect it once did. It used to be a comfort thing. As it was for David as well. But as things progressed…it lost its luster, as many things did. As the steroids increased, so did David’s appetite. And if any of you have ever had a loved one on prolonged, high doses of steroids…it is ugly. They are a necessary evil…I know that. And I know they kept the swelling down in David’s brain or the pain would have been unbearable for him and there could have been severe cognitive changes or even sudden death. But man they were some nasty shit. David’s already voracious appetite was insatiable. And he hated it, god how he hated it. He knew that his body was full and yet he would continue to eat and eat...he couldn’t stop himself. He would try and he just couldn't and it disgusted him. It was so difficult to watch. And now, those moments and many others have forever shaped me...for better or worse. They changed how I see food myself and maybe that is ok.

The long road…

2008-11-13T12:12:00.000-06:00

Alec is grieving and some days it is hard enough coping with my own grief let alone being responsible for someone else’s as well. This is one hellishly long road…with no end in sight for either of us.

And sometimes, when Alec is having a really difficult moment, I must take my grief and tuck it away in a little glass jar and place it high upon a shelf. I am then able to pull myself together and be completely ‘there’ for Alec. And once he goes to sleep, I will take that little jar off the shelf once again and open the lid and peer in. The jar may appear empty… but the grief is in there, swirling around at the bottom. Sometimes looks can be deceiving. Just like when you look at me…I may look fine…but the grief is still there. Always there.

So we continue down this road. At night it has become part of the routine. Alec is processing…So we talk about David. We talk about Cancer. Alec talks about his daddy’s head and how his brain got hurt. And then he’ll talk about the Cancer and how the doctors couldn’t get it all out. Sometimes he’ll stop there. Other times he’ll talk about the day David died. How daddy’s body stopped working. He’ll remember all the people that came to visit and the noises daddy made. That always gets me. I want him to remember so much, but there are some things I wish I could forget…and there are some I wish he didn’t remember and that is one of them. That awful rattling, moaning sound haunts me. And as Alec recounts that day…sometimes I just want to scream. And yet I can’t…not now. I must sit next to him, rub his back and smile. Encouraging him to talk about it and intern helping him come to terms with it on his own.

But the disheartening thing is...we’ll being doing this again and again. And as Alec continues to grow and his mind continues to develop...he will be able to understand things on new levels, and we’ll go through this all again. And for better or worse…this will always be a part of our life. As Alec hits certain milestones in his life, he will relive his fathers’ death. That’s normal. It’s part of the healing process. And it sucks.

And somehow I have to keep my shit together so that he is able to do this. Making sure he is in a safe and loving environment so he feels secure enough to process the things he needs to, so that he is able move beyond this loss. All in hopes that someday he will become a well adjusted man who is able to have normal and healthy relationships. Life is hard enough without throwing abandonment issues into the mix...and this little guy has already had too much thrown at him in his short little life.

The path of grief...

2008-11-07T07:20:00.000-06:00

There are so many people out there going through this. Too many of us…learning to live without our loved ones. Today my thoughts are with a few special ladies who I spent the last eight weeks with. It was a bereavement group and we learned a lot about each other and it was my pleasure to have gotten to know these strong women. Our final meeting was last night and now we will continue our separate journeys…hopefully to a place of peace and acceptance someday. But it was so good to hear other people’s stories. To hear their pain…and their joy. And to learn that what I was experiencing…things I was doing…weren’t crazy. They were just part of the process of mourning. Grief. It can be a dark place filled with forgetfulness, tears and loneliness. But you are never alone.

Many of us had lost our spouses and most were lost to the beast we call Cancer. We learned a lot over the past month and a half. We learned about each others beautiful husbands, our lives before and after, and what we were doing to survive the days. We lost 11 of the original 17 people. It was a long road. Many couldn’t bear the pain of remembering the loss. Reliving it. But a few of us knew this was the beginning of the road to healing. We knew this journey wouldn’t be easy. How could it be? But we did it and I for one know that I am stronger and better equipped to face the future and the continually changing face of grief than I was before. And in the end…the six of us became closer and stronger for having shared our grief with one other. It made the burden not quite so heavy…

I am still on that road to healing…and I will be for a very long time. I may get off periodically, to rest and regroup. But then I will have to get back on and continue trudging through it all once again. But the path to healing is not filled with flowers and singing birds…if it was, everyone would be doing it. But it is worthwhile and imperative to my survival. Not only physically but emotionally.

And I need to remember that I never walk this road alone. I have all of you, who have seen me through the past two and a half years, and I know many of you will be there for many years to come. Many new friends have joined me on this journey as well and I am sure that many more will continue to in the years to come.

There is no normal...

2008-11-03T21:10:00.002-06:00

I have been told that hopefully someday soon I can get back to my “Normal Life.” But really, life isn’t normal. There is no set standard for normalization people. Life just is…simply put. It is constantly changing and evolving. But if you consider my normal life to be the life I had before. Before Cancer. Before David’s death. Well, I can never get back to that place, no matter how desperately I would love to. I would give anything to have my beautiful soul mate back in my arms again, but that is just not in the cards for us this lifetime.

So. Here we are. There is nothing to get back to. That path ended. David is gone and he is never coming back. And so with him, our life, our future together is gone. All the dreams we once had and the life we planned to live will never come to fruition.

Someday I will learn to live a new life. A different life than I ever envisioned and it sucks. I will move forward. For David. And for myself. But I will never get over this in the sense that people think. A part of my soul died the day David did, and that part will never come back. That hole in my heart can never be filled. I will learn to adjust to that hole and someday the pain may not be as raw. But it will always be there and my heart will just have to learn to work around it. And someday hopefully I will adapt to my new life...and open myself to a new future and the many new uncharted paths that lay before me. And maybe then I will be able to move beyond the pain and loss and learn to live without David. Definitely not today...and probably not in the near future. But someday.

The future is a frightening and lonely notion right now. And the thought of a lifetime without David brings me to my knees. But there is a future…however dim it may seem to be right now. Because the damnable thing about life is that it moves on. So, I will keep stumbling forward. Reaching towards an uncertain future. But knowing…believing something has to be awaiting me. I am here for a reason. Damned if I could say what sometmes, but I am here. I am Alec's mom and I am that little guy’s world. And unfortunately, life dealt him a shitty hand too. So we will stumble along together. And new doors will open. I may not see any doors right now. But I know they are out there…just waiting to be unlocked.

I am reminded of a Van Halen song, where they said something like ”Standing on broken dreams...never losing sight.” So, I will pick myself up and someday stand on all of our old dreams together and dare to imagine a new future. We all have broken dreams. Some dreams never come to pass…and that’s just life. But I believe that strength comes from being able to climb up and stand upon all of those lost dreams and begin anew.

New dreams will be born. New paths...
Will the thought of my lost future with David still linger. Most definitely. But David will be with me always. He is a part of me now and I will carry him with me for my remaining years. But someday I will take all the strength and love we had. And dare to continue to dream again…

The Checkbook…

2008-10-26T23:20:00.001-05:00

Ok. I’ve begun balancing my check register. No biggie right? Wrong. I have the last six months to do. I know many of you are probably thinking that is insane. But honestly…it is not bad. It could be much worse, believe me. Bills are getting paid. Alec is being cared for. I am doing what I can and surviving the days. Some things have gotten lost along the way. Many things probably. But I am making sure that Alec is getting the love and attention he needs. And doing what I can for myself. Check registers…yeah they are important. But they will get done. And they are not crucial to daily survival. And far worse could have gotten neglected.

At first it never got done because I was consumed with taking care of the important things like David and Alec. Then, after David passed, there were always so many other things to do. I knew the account was fine…so I just kept putting it off. Well. I began tonight and it sucked. Probably not why you think though. Going through and checking each item off. It was like taking a stroll back through the past couple months. The days following the stroke. The daily visits to the cafe to get David his coffee and bagel before he went off to PT, OT and speech therapy. Those long weeks in the hospital in rehab. The never ending trips to the pharmacy for the continually changing and increasing medications. All of this was captured by that little check card. And I had to relive it all.

Some were fond memories. Memories I will now treasure in my heart forever. But many were bittersweet. There were the many outings we crammed into this summer. Trying to embrace and capture every single second. But many would end up being our lasts. Our last dinner out. Our last art show together. The last piece of artwork David would ever buy. That little check card also captured moments in time. Like the beautiful necklace David bought for me at a bead shop. He was on the way back from the hospital after an outpatient therapy visit and he cajoled his family into stopping. And for some reason the store actually had completed necklaces there and not just beads. And even with the stroke…and at that point the beginning of renewed tumor growth. He still remembered Mother’s Day and was able to get me something. And later the chocolate cake he would have another friend help him get for my birthday. He was able to do it…simple things. But they meant the world to both of us. He hated having to rely on others to do these simple tasks. But he did it. Because it was so important to him. With the help of our remarkable friends he was able to do the final things that he wanted to do. The final legacies he would leave for Alec and I. They took him wherever he needed and wanted to go, for he had a “plan” and there were things he wanted to do before he passed and someone was always there to help. And looking back through these registries I am reliving those days. And reminded of all the amazing support we had and continue to have.

I only made it through two months tonight. I know that I will have to do the rest… and probably soon. But those remaining months will be tough. They will recount the final days of David’s life. The things that had to be bought to make him comfortable and happy. All the final requests he had. And then the after. The days that I have forgotten. So numb and lost. Going to buy an outfit for his celebration of life. Finding the glass piece for his unique vision. All the preparations that were made in the days following david's death. The celebration. The obituary. All the end of life crap.

This is hell. I know that the body is a highly evolved and amazing piece of equipment...and that we are numb for a reason. I have been told and also read that if one were to experience grief all at once, it would literally kill you. The pain would just be too much. So your body doles it out…slowly. Letting you process it at a rate you can handle. Which means the grief and pain tend to come in waves. Crashing over you. Taking your breath away and smothering you. And once you pick yourself up…another wave will come again.

Your body knows what you physically and emotionally can handle. So it lets you process the grief. Experiencing the loss in stages you can survive. But when they hit, like they did tonight, the pain and loss is debilitating. And I swear it is going to kill me. Just break my poor little beaten heart in half. And unfortunately there is not a damn thing I can do when these tidal waves hit...slamming me to the ground. It is futile to fight it. You can not avoid it. It is going to come whether you like it or not. So I just sit down...or curl up...and let the pain wash over me. And know that I will come up for air again. Someday. But sometimes it is so difficult to pick yourself up…knowing that there is another wave. Waiting. Not knowing when it will hit. But knowing it will. And knowing that I will have to stand up and face it again and again. Hoping that someday those waves won't be as big and won't knock me down quite so hard.

No one ever said life would be easy...

2008-10-23T10:33:00.007-05:00

Earlier in the week someone asked me, “So, you’re ok now, right?” Ok? You’re kidding me right? I have been hearing this lately and it’s beginning to really piss me off. David died nine weeks ago…basically in my arms. I am now a single mom. A widow. And essentially trying to get through the days, be a good parent and mourn the loss of my lover. I’m not ok. I’m far from it. Just because I am not huddled in the corner in the fetal position or hysterical doesn’t mean I am fine and “getting on” with my life as I have been told to do so much recently. I’m living. For David. For Me. For us. Because David didn’t get the chance to live out his dreams and his life. I’m trying to continue on for the both of us. But that doesn’t make me ok. It makes me a survivor.

And onto other ranting…I figure I’m on a roll and I might as well get it all out now. Mind you, everyone does not need to freak out about how they have been to me. Or begin pulling back and rethinking how they interact with me. People have been amazing and if you are sitting here wondering if it was you...then it probably wasn't. So many of you have been phenomenal and I wouldn't be here today without all of the love and support I have had. But here's where I am having a problem...

I am so tired of the people who avert their eyes when they ask me how I am. Give me a break. Get some balls. If I can survive this, these people can muster the strength to look me in the eyes when they talk to me. And for those that decided to completely remove themselves from our life after David was diagnosed and the others that dropped off as he was dying or after he died. They missed out. And I mean that.

Some have sent letters saying that it was too difficult. Too painful. So they have stayed away and continue to do so now. Too painful for them? Are you serious? Try living a day in my shoes. But ya know, I didn’t walk away. Never would have. And I will forever be glad I didn’t. David was amazing and taught me so much about love and life. Precious gifts. And the last two and a half years have forever changed me…for the better.

No one ever said life would be easy or fun all of the time. Part of life is pain. But life has many things to offer. Life is also full of joy, exhilaration and passion. Life just is. The good and the bad. The balance. You can not pick and choose which things you will or will not experience. Because then really…you truly aren’t living. David chose life with all of the crazy crap that went along with it. So I am choosing life as well. Embracing the pain and loss…because I too have all of the beautiful memories we shared. The laughter. The love. Our wonderful life together.

The Undertow...

2008-10-18T22:53:00.000-05:00

Why is it that the weekends are so difficult?
Friday nights, basically the entire 24-hour period of Saturday and all of Sunday as well. There is so much more time to think. More moments of quiet. And all the holes that David has left in our life are more apparent as well. All the things he did. All the things we did together. All the beautiful moments that made up our life.

Weekends were not only the time to get the crap done that you never had time for during the week. They were also playtime. Time to do art, work on the house, play with Alec or just have a nice stroll through the park together. And now there are all of these holes. My life is like a wedge of Swiss cheese.

Today was tough…but Saturdays always are. But tonight was the kicker. As I put Alec down for “night, night” and we were talking about Sunday and what fun plans we had for the next day…he asked if daddy was coming back tomorrow. It stilled my heart. What the hell do you say? These moments come at you like an undertow. Sucking you down and smothering you. And you have to stop the horrible heartbreak and tears that want to come. And you have to calmly explain to your son that…”No, he’s not honey. Daddy died, remember? He won’t be coming back again. His body just couldn’t fight the Cancer anymore and his body stopped working. He loved you so very much and wanted so much to stay. But he just couldn’t. So he won’t be coming home again. But he loves you so much. And daddy is here, watching over us. Although you can't see him, his presence is always here…with us. But I know it’s not the same. And I know that you miss him. It’s ok to be sad honey. I miss daddy too.”

And to see the sad little look on his face. It just tears my soul out. He just doesn’t understand the permanence yet. He is too young. But at least I’m grateful that he has begun to talk about daddy again. He talks about David’s favorite Backyardigans character or what he liked to eat. He’ll point him out in pictures and he’ll talk about how much fun daddy was or how much he loves him. And I try to bring David up in conversation regularly. Showing Alec that it is ok for him to talk about David and ask questions, as well.

And he smiles when he talks about daddy. Which is a big improvement from just four weeks ago, when he would not refer to him at all and wouldn’t even say the word ‘daddy.’ And if David was brought up in conversation…a shadow would come over Alec.

But he is doing remarkably well considering. He is confused, scared and sad. Which is completely normal. And if he wasn't, I probably would be even more worried. Not to say that I am not constantly worried about Alec and what this is doing to him now and in the future. But all I can do right now is love him, be there for him in every capacity possible and continue to keep the lines of communication open with him as he continues to process all of this, which he will…just in small doses his little body can handle. The main thing is to be there for him. Talk to him. And listen. And hope like hell that I'm doing and saying the right things to help him heal as well...

Bother Me…

2008-10-11T22:53:00.003-05:00

I just wanted to say that although I may not always respond to your voice mails, emails or cards. They mean the world to me…more than many of you probably know. I find that I don’t seem to have enough time in the day lately to get done the insurmountable paperwork and crap that continually awaits me, along with being the mom Alec needs me to be…and mourning the loss of David. And sometimes, honestly, I just am too damn sad to pick up the phone or reply to that email.

But I wanted everyone to know how very much all of your continued contact has made a remarkable impact on my life. Those calls, letters, blog comments and emails mean the world. They make a huge difference in my life. Making those hours of solitude a little less lonely, bringing smiles or at least strength in those dark hours.

Hell, just seeing that little counter on my blog slowly ticking upwards makes a difference. It means I’m still in people’s thoughts and that although the world may seem empty and lonely right now. It reminds me that I am not alone…and for that I am forever grateful.

Thank you for the smiles, the tears and the beautiful words of wisdom and encouragement. I need them and appreciate them, although I may not have gotten back to all of you…

And for those of you who say you don’t want to bother me…I say, “Bother me. “ Please. Because it isn’t a bother. Many people deal with grief differently. But I am a social person and the only thing some days getting me through the hour…and then the day…is all the love around me. Helping bouy me. Keeping me afloat. Without it I would have gone under long ago.

My heart...

2008-10-04T23:29:00.000-05:00

I went out tonight. Saw Cirque du Soleil and it was wonderful and amazing. And as I watched the performance …all I could think of was how much David would have enjoyed it and how very much I wish I could have shared it with him. And as we left, everywhere we went there were reminders of him. Places we had been so many times before, restaurants we had kept wanting to try but had never gotten the chance. So many memories lost. So many moments that will never be shared. That knowledge weighs on me tonight. It is weighs on me so heavily I feel as if my heart will break…shattered from the pressure.

There are so many things we will never get a chance to do now.
So many things that we will never get to experience…

We will never go to the theatre…or dinner…or a café again.
We will never have another date night again. Ever.
I will never see that magical twinkle in his eyes when he looked at me.
We will never walk in the rain again, like we did so many times before.
I will never feel the warmth of his body beside me or feel his touch again.
I will never get to hear him say I love you again or hear his wonderful laughter.
I will never drift off to sleep, hearing the beautiful rhythm of his breathing.
I will never again feel the peace and love I felt when he walked into the room.
Alec will never get to snuggle with his daddy again on the couch.
I will never again see the love on his face when he watched Alec sleep.
We will never make art together again.
David will never grow old.
And I will never get to see those beautiful laugh lines around his eyes deepen.

All these things…and so much more we will never again have together. And it just seems too much to bear tonight. I don’t know how to survive today…yet alone a lifetime without him. David is gone. And with him I think went my heart.

The Message

2008-10-03T13:00:00.001-05:00

Late last night I was sitting on the couch, trying to read but finding myself unable to focus. I decided to turn on the TV and see if I could find something mindless to watch. Within a few clicks I found myself on the history channel and “Tombstone” was playing. My initial response was to click away from it as fast as possible. David loved that movie. I can’t tell you how many times we watched it. Before Cancer (BC) and after his diagnosis. Whenever David was hospitalized and I would pack up the portable DVD player…that was always the first movie he requested. In the end I used to just keep it in a bag with the DVD player.

But for some reason, last night I decided not to click away. I watched the final scene of the movie where Doc Holliday was dying. I kept thinking to myself, why in the hell are you watching this? And yet…I stayed. And as the scene played out, I saw it like I never had before. Firstly, as Doc was dying I kept thinking to myself…it’s not like that at all. As someone dies, it’s just not like that. Or maybe it is like that for some, but just not David. David went very peacefully…but it was still different. The body movements…the breathing. All of it. And yet, compared to the way many movies do it…it was much closer than some. But still…the final moments were wrong. But they always are, aren’t they?

But I digress. What really captured me was what they spoke about before he died. They were talking about life and here’s what they said:

Doc: "What do you want?"
Wyatt: "Just to live a normal life."
Doc: "There is no normal life Wyatt. There’s just life."
Doc (again): "Now get on with it."
Wyatt: "I don’t know how."
Doc: "Sure you do…Live every second. Live Wyatt. Live for me."

It doesn’t sound as poetic as it did as I watched the scene. But what resonated with me is that it sounded so much like David. How he used to speak and what he wanted for me...and I know that if David were here right now he would be saying the very same thing as he had said so many times before. And the message is that there really is nothing normal about life. There is no normalcy to get back to. Life just is.

I get the message my love and I know that you want me to live. I will try. Try to live for us...live for you. Hopefully someday I will be able to enjoy life once again...enjoying it for the both of us. Doing the things that we never got a chance to do together. Someday I will my love. Just not today.

Lucky?

2008-09-28T22:34:00.000-05:00

I have been told by some that I am lucky...That I am young and will be fine. I’m always bewildered by this statement. As if somehow, being young makes you more resilient to the pain of loss. They say I have my whole life ahead of me and I’ll be ok. But these words offer little comfort. For now, the long life ahead of me doesn’t hold the warmth it once did. My hopes and dreams for the future are gone. Growing old with my husband, sipping tea on the porch. Those are now wistful and unrealized dreams. I am now faced with an uncertain future and the length seems a mockery. For me, a long life gives no comfort because it seems like a sentence. Too many years filled with loneliness and sadness. Missing my love. This may not be the case forever, but for now that is how it feels. I may be young…but right now my soul feels old. So old and tired.

I’m tired. Tired of being strong. I feel like a lone warrior standing on the battlefield. Head bowed. Seeing the loss of life. The loss of hope. In many ways it feels as if the war was lost. My beloved is gone. And many days it is hard to muster the energy to get up and fight once again. Fight to move forward. Battling against the warring emotions in my heart and mind. We fought for life, for dreams and for hope. We fought this battle so bravely together. But that is the key term. Together. Now, it is so hard to continue this battle alone. And it is a battle. Getting up. Making it through the day. Sometimes just making it through the hour. My comrade in arms is gone and now I must continue on this journey alone. Hope seems intangible.

But those people aren’t completely mistaken…I am lucky. But being young isn’t why. I am lucky to have had David in my life. I wouldn’t have traded a single moment in the past 16 years...to have not had him in my life. Yes, there were dark times during the last 2 and half years. But there were spectacular ones too. And even the Cancer doesn't diminish all the precious moments we shared. Although he was taken way too damn young, I know we did more in our 16 years that some do in a lifetime. I know that our love was pure and strong and will continue to live on. Shining brightly among the stars. And I know that some never experience the love and passion we shared. So maybe…just maybe…that is what I am fighting for? Keeping that spark for life that David and I cherished so very much...alive in myself.

Right now I am beaten and broken. My heart is torn and I don’t know if I will ever be able to step on the battlefield again without my brave warrior beside me. So for now I will rest. And maybe someday I’ll find peace. Find the spark buried deep within me that threatens to go dim. And maybe someday I will begin to find hope and dreams again.

I wonder...

2008-09-18T23:08:00.000-05:00

David was such an inspiration to me and will continue to be…
I often wonder if I would have had such dignity and strength facing death? David always said my road was the much harder road to travel. Because he knew he would be a peace at some point in the near future, and I would be left trying to pull the pieces of our life back together…mourning the loss of my beautiful husband and lover. But his road was a tough road as well. And yet he took it with such dignity. Yes, he was scared sometimes. I don’t think he would have been human if he weren’t. But honestly…most days he was more concerned for Alec and I, and how we would be able to traverse life without him. Death scared him….but not as much as you would have thought. He was calm. He knew his time was coming and he told me that he would be watching over us for the rest of our years until we would be once again reunited.

But he did worry about his final moments…and what they would be like. But not for him. For me. He didn’t want me to see him die. He was afraid of how he might go…and he didn’t want me to remember him that way. We had many discussions on this topic, seeing as we were both so damn stubborn. But I told him that there was no way in hell I would be anywhere but by his side when he went. He was my lover and I would be there to comfort and care for him. Helping him to find peace and love in his final moments in life. Soothing him and talking him through it. Knowing he was never alone. And I knew…he always found peace by my presence in a room. And be damned if his final moments would be that of fear, loneliness or pain. There weren’t many things I could control in this hellish situation…but that was one of them!

We always found peace in each other’s presence. Maybe that is why now…without his presence in a room, my life feels so empty. I have not found peace and don’t expect to for some time. Maybe never. But it reminded me also about when he told me about how much he just loved me being in the room with him.

It started one of his first hospital stays. He would have a constant stream of visitors in the hospital...and he would be chatty and engaged. And then the moment I arrived, he would go to sleep. It used to drive me nuts. And then one day I finally asked him why he conked out the moment I stepped in the room. And he told me, “because he felt so safe and secure when I was there…he felt he could finally sleep.” So, I used to spend hours upon hours watching him sleep…comforted knowing that I was bringing him peace. He would look up periodically to make sure I was still there, watching over him. And smile…

And in his final days, he would ask me to wake him up to let him know I was in the room with him. And I would, and he would smile and go into deep, restful slumbers. It wasn’t much, but it was one of the few things I could do for him. Letting him know he wasn’t alone and just be there for him. Love him.

It gives me so much joy and peace myself to know that I was able to care for him to the very end. And give him the peace he needed. That I was able to stroke him arm and tell him I love him and that it was all going to be ok…as he took his last breath. That is a moment I will cherish forever. Because I know he could hear me and I was able to be there for him, love and comfort him in his final moments in life. No one should ever be alone as they die.

But I wonder so often now, how would I have faced this? Would I have embraced life as he did and not dwell on the tragedy of it all? Would I have looked death in the face and laughed…and then went out for ice cream? I don’t know. I know that through David’s example…I was able to embrace life with him. Enjoy his final days here and wring every last precious moment out of each day. And I know I will forever be changed by this. Not only the loss of my beloved. But how he chose to live his life as well. Despite the Cancer. And I know that I look at death differently now. It still is difficult to imagine. And I still don’t know how I will handle it when I am faced with my own mortality….But I don’t fear dying as much as I used to. Because David showed me that when faced with it. You can fight it…and you can also choose how you want to go. And he did. And it isn’t as scary for me because I know when my time does finally come, David will be there waiting for me…and we’ll begin a new journey together. And knowing David…by that time he’ll have worked out all of the idiosyncrasies and he’ll have already planned out our next adventure.

Hopefully that will be enough...

2008-09-10T18:03:00.010-05:00

How do you tell your son that his daddy is dying. Or even worse, how do you tell him the unimaginable...that he died? These and many other questions used to haunt me at night...Keeping me up until all hours...trying to figure out what to say. And unfortunately, I had to decide. Because I knew the day was coming. It was unavoidable and I had to be prepared. No matter that I just wanted to crawl in a hole and hide from the pain and the incomprehensible future of life without David. But now I was going to have to explain it to our son.

But I did it. Unsure how, but I did. It was such a difficult and painful thing to do. But hell, nothing about this has been easy or painless. So, why would this be any different?

We had always been very honest about David’s illness. We didn’t say he was "sick" anymore as the Cancer progressed. We began to call it what it was. Cancer. Sick began to have too many negative connotations and the faintest sign of a "cold" and being sick would send Alec into a tailspin. So we ended up changing our terminology, so there was no concern about when one of us got sick with a common cold. He couldn’t differentiate between the two. So we began calling it what it was and being as honest as possible with him...trying to distill what was happening and the treatments into terms he could understand.

As things progressed and David had his stroke, we explained that the tumor had hurt daddy's head. We explained that Daddy’s body didn’t work as well as it used to because of the cancer. And as the tumor began to affect David's motor functions and he became weaker, we had to explain what was happening as well. That his body was failing and would stop soon. It broke my heart to tell Alec this and to see the concern in his eyes. And Alec would resolutely say, "Daddy is fine. He's going to be fine." But you could see the worry...

That dreadful morning after David was gone, I had to tell Alec. I took him into the room where David had been. To the empty hospital bed and told him that David had passed away. I explained to him that daddy's body had stopped working and that he would no longer be here. And that although we couldn’t see him, Daddy would be watching over us as David had said to both Alec and I so many times before. And that Daddy always said that if you ever wanted to talk, he would always be listening. He just might not always be able to respond. And that his he loved him very much and that he wanted to stay. He fought long and hard to stay, but unfortunately they just couldn't ’t get all of the Cancer out.

Alec understood all too well what happened. He knew his daddy was gone and you could see the utter fear and panic on his face. But as they said might happen, he turned his head away and wanted out of the room. He won't talk about David yet. And they say he might not for awhile. But he's processing all that has happened and coping as best as his little body can. And once he's ready...he'll begin to talk about him once again. And I'll have to somehow help him come to terms with the grief of losing his father at such a very young age.

David absolutely adored Alec. From the moment he was born 3 1/2 years ago...David spent every waking moment with him. And when David was diagnosed when Alec was only a year and a half that never changed. Despite the treatments and everything David's body went through. He made sure he always had time for Alec and gave him all the love in his heart. And I have 3 1/2 years of photos, videos and stories to prove it. So, Alec will always know how very much his daddy loved him and how very hard he fought to stay with him. He fought so hard. And hopefully that will be enough.

The nights…

2008-09-05T23:58:00.003-05:00

We slept like we lived. Completely intertwined. So the nights…they’re difficult. Our bed is so big now. Like this huge empty expanse.

Going to sleep without your lover beside you is just wrong. It’s just not how it is supposed to be. And I find that sleep only finds me when I hit total exhaustion. So I wait and often don’t lie down until it is really late. When exhaustion can overtake me and the empty space beside me doesn’t hurt quite as much.

I miss a lot of things lately. But at night…I miss the incredible warmth and love of having him close. Having David beside me just felt right. We wrapped ourselves up like pretzels and despite my 10 minutes of getting comfy every damn night…and David razzing me for said 10 minutes. Once we found our niche. It was perfect. And I felt a peace and contentment like no other. It was like I was “home.”

So here I am again. It’s midnight and I’m here. Awake. Wishing with all of my being that David was here beside me now. And knowing he isn’t. And just trying to imagine how I will get through the night without him once again.

I miss him so.

The Speech...

2008-09-04T20:36:00.002-05:00

I've gotten a few emails about the speech ...
Although we had quite the crowd, there were many that were unable to make it as well. It was a holiday weekend and people had committements. But a close friend said that I should post my speech, so those who were unable to attend could read it.

It's strange. I wasn't worried about the actual speech, I was worried what to say...How do you write something that conveys how very much you loved someone? How they inspired you and became a part of you. How the world will forever be a better place for having them in it. How do you capture it in words?

I hope all the passion comes across in the words...I think my own emotions were conveyed to everyone there by how I spoke it as well. I don't know if I was able to capture everything I had originally intended...Hell, this wasn't even what I had envisioned when I began writing it. But this is what came out and here it is:

I spent a lot of time trying to think of what to say to everyone here tonight. I thought about talking about David and the phenomenal person he was. But I don’t have to tell you who he was, you all knew him. And then I tried to write something wise or profound. But in the end, I decided to just talk about David, what we learned and how he inspired me…

David and I learned a lot on this crazy journey. We learned that Cancer is a malicious beast that takes many things. Most poignantly of all…life. But there are things it can never take. Like Memories. Our love. Our Strength. And our Dreams. David taught me that…

David also taught me that Life is really all about choices. People say, “I had no choice.” But really, you always have a choice. You may not like the options, but you always have a choice. We didn’t have to like that that he had Cancer or what the treatments did to his body. But we did have a choice. We could stop enjoying and exploring life together. Stop laughing. Stop loving. Stop living. Or we could continue to move forward. Play. Laugh. Go on walks. Make art and Live.

And David chose to live. He chose to live his life as he always had. On his own terms. Enjoying the moment and creating beautiful memories. Not letting the Cancer overtake him, dictating his future. And he taught me you can’t let these things beat you. Let it define you and control your life. You must rise above it like a phoenix.

I think we have all learned a lot on this journey. I think we learned not only about David’s strength, his sheer determination and strength of will, his total unwavering optimism at the face of such adversity, and his pure love of life…but we also learned a lot about ourselves and each other as well. David taught us many things over the last couple years and I hope to carry his love of life, his compassion and his warrior spirit with me always.

I used to tell David how amazing and strong he was, and he would always say it was because of me. That I gave him his strength and that I was his warrior woman. I always thought this was so absurd. But over time…he helped me see the real me. The strength within me. I’ve learned that you have a choice of whether or not you will let events break you. And I’ve learned that I am one hell of a fighter. So, thank you David. Thank you for all of your love, support and wisdom. And although I can’t see you right now, I know you are here watching over us and I have your words and your inspiration. Because you my love, will always be MY warrior.

And David will continue to be my inspiration. And I hope in the coming years to always keep that with me. To remember that we can all do anything we set our minds to. And life is really all about what you make it. That strength lies within us and we have the power to unlock it. Because we all carry it within us always. Thank you my love.

Here it is...

2008-09-03T22:50:00.005-05:00

Many people wanted to see the completed piece...

It's an absolutely breathtaking testament to the love, compassion and support surrounding us. A completely original concept of a "guest book." But we've come to expect nothing less from David…

I know that although it's a bit different than he originally intended, I think it far surpassed his expectations and it will be a beautiful reminder of the all the amazing people in our lives who came together to honor an amazing man.

Celebration of Life

2008-08-31T23:25:00.003-05:00

Saturday was David’s “Celebration of Life” ceremony. It was a beautiful tribute to a beautiful man. Hundreds of people turned out. The love and support was amazing. Much of the night was so surreal, as hundreds of people walked past offering kind words and consolations. There were moments where I felt like I was in a fog. Some sort of nightmare where I just couldn’t wake up. How could I be here…at my husbands’ memorial? How could this be happening? And at those moments I would start to shake. Like the night David died. I know this is when I’m going into shock again. Like I did that night. I start to breath shallow, and I get extremely light headed and a cold chills me to the core.

I tend not to even notice that this is happening until someone says something. Like last night, an old friend came up and asked innocuously…are you breathing? And I realized. I wasn’t. I don’t know if he noticed a change in me or not. But I wasn’t doing well at that moment. And as I looked at my hands. I was shaking all over. And I was so cold. But the moment passed and I started to take slow deep breaths. But I get this way sometimes now. When I think about that night. Or I think about my future without David. Or my future at all. And I think I tend to sometimes just start to shut down. But I pulled myself back together. And the moment passed.

It was good to see so many people from our journey through life thus far. At moments I was touched by the words of comfort people had, others were inconsolable…mourning the loss of David, and others were speechless. But all were kind, loving and compassionate. Many didn’t know what to say. But what can you say? He was too young. Yes. But what David crammed into that 37 years, many don’t do in an entire lifetime. And his “celebration” was so fitting. The live butterflies exhibit, full of peace and serenity. A symbol of life and metamorphosis for David.

The glass “guest book” was perfect as well and now is a permanent symbol of all the love and support that’s surrounding us and hopefully will continue to surround us in the dark days ahead. David had originally intended us to make a piece, but as he went quickly…there just wasn’t the time. But there never is. Not to do everything. But I went to a gallery and found this piece as I walked in the front door…and I knew this was it. It was perfect. The base is three figures; symbolic of David, Alec and Me. And the glass basin, is a fused glass piece made by a local artist who is too a warrior in the battle against Cancer. And as it was just waiting for us…for this celebration…I knew David was smiling. Because although it wasn’t quite what he had envisioned…it had the essence.

The “Sweets” that David had selected were a hit as well. He had been so specific. Brownies. Fudgy. No nuts…No icing. I can’t tell you how many times David bemoaned a perfect brownie ruined by those dastardly nuts. So…fudgy brownies it was. Also, there were root beer floats of course. David was a connoisseur of Root beer and that was the first thing he requested for his celebration. And then there was cake, a coffee bar, and a chocolate fountain. David always did love his sweets!

The dessert stations were spread through the streets of Old Milwaukee in the museum. And as I roamed the cobbled pathways, I was warmed by all the love. People were gathered in little clusters. Some laughing, some shedding tears. But all were sharing stories of David. Recounting little moments of his life. And it was beautiful. Because so many people were there that night, from so many different paths of his journey through life.

David’s celebration was perfect. Or as perfect as a night can be when you are celebrating the life of your beloved. But I could feel David’s smiling face and the joy from bringing all of those people from his life together in one room. To celebrate him. He wanted us to remember his life and who he was. The man and his amazing capacity for love and life. He understood that people would mourn his death, but he didn’t want to be remembered how he died. He didn’t want to be remembered in death, he wanted to be remembered how he lived. How he choose life over death, all the way up to the very end.

A Hollow Shell...

2008-08-26T15:17:00.004-05:00

The morning after David passed…the sky was rainy and overcast. As if the world mourned the loss of such an amazing man. Honestly, I don’t know how the world continues on without David in it. And to be honest, I don’t know how I do. But that’s the beautiful and horridly painful thing about life. It continues. Life wretchedly moves on.

I feel as if my life stopped that day. Because David was such an integral part of me. When he died, so did a piece of me. Right now it feels like all of me died that day and now I’m just a hollow shell. Going through the motions. But not really living. And my future now seams bleak and lonely…because David and I were always meant to be together. And now that he’s no longer here in a physical form, I feel bereft and alone. I know he watches over us. David always said he would, and you know he always did what he said he was going to do…no matter how unlikely or improbable.

He said he would be there for the rest of our days, watching over and taking care of us. And that he would always be listening if we wanted to talk, although he might not always be able to respond. And he said before he went, that he didn’t understand how this “whole thing worked” but that he would be waiting for me. And I know that he will wait, like he said he would…because honestly we could never go anywhere without each other. And sadly, that is the one thing that gives me comfort right now. That someday we’ll be together again.

I try to be strong. David wanted so much for me to be happy and enjoy the remainder of my days until we could be together again. But I feel I'm a pale shadow against the greatness that was David. I feel that along with with him...left my strength, conviction, will to live and enjoy life. As if all hope left my world along with my best friend.

I know I have Alec. And I adore him. And I will be his mom and love him…because he so desperately needs me. But skye…the woman. She is a sad, shell of what she once was. And I don’t know how I will survive today…tomorrow or the remaining years of my own life. I hope I can find the peace that David so desperately wanted me to. I hope that I will be able to move beyond the pain and loneliness. But in the days following the loss of my soulmate, I can’t comprehend it. The moment we met…we were connected. And although that connection will never go away and we will always be a part of one another….it seems like an eternity until we will be able to be together again. And I not only mourn my love…but I mourn the loss of our future together.

My Brave Warrior is at Peace…

2008-08-21T16:12:00.002-05:00

David passed Monday night at 8:53 pm. And I feel like I died the moment he did. He went very fast and skipped most of the “crap.” They said he couldn’t skip the crap…it was inevitable with a brain tumor…but he said he would. And you know David. When he spoke in that one tone of conviction and he said he was going to do it. He did it. So, he said when it was time he would go fast and easy as possible. And he was true to his word. He skipped the seizures, the delusions, and the coma. He skipped much of the nastiness. He was David to the very end…which in itself is unheard of. But David always did like the break the rules. He was up and moving about Saturday morning and by Saturday evening he was bedridden in a hospital bed. By Sunday he wasn’t very communicative. He no longer opened his eye, spoke or moved much. Periodically you could get a nod of understanding from him when you asked him if he was cold or needed pain medication. And he would hold my hand and periodically stroke it. But that was all.

That night I knew he was getting close. I crawled in beside him on his hospital bed. Like we had done so many times before. But this time it was different. Because when he was in the hospital…he was just recovering. Just tired. But he would hold me and stroke my hair. That night I was the one who held him. Stroked his chest and soothed him. At first I was unsure if he even knew I was there…but then he tried to roll over and hold me like he always had. And he would try to reach out for me, although his arm wouldn’t cooperate. And I knew he could feel me beside him and he seemed at peace. He always said he was a peace if I was near him…and it was all I could do at that point. So I lay next to him all night. Held his hand and gave him peace.

By Monday morning he no longer was able to nod or move. He was unresponsive to my touch and was unable to even squeeze my hand. I know that even then he still knew I was there and it soothed him. You could tell by his breathing and at one point as I was talking to him…he even gave me one last smirk. I talked to him a lot that day.

At the end he took his last breath as I sat beside him…holding his hand and stroking his arm. He waited for me to get back into the room and then he went after one last big breath. He went peacefully and I knew the moment he was gone. My Brave Warrior is at peace now. His is no longer in pain and he will no longer be encumbering by a failing body.

Me? I’m no so well. I am not at peace. I feel like a part of me died when David did and that I will never feel peace or joy again. My body is hollow and I’m just going through the motions at the moment. Unable to feel like I will survive this…even for another moment.

The pain is unbearable and sometimes I feel as if the pain will drive me to insanity. And yet I’m still here. My beautiful warrior has been gone for almost three days and I’m still here. I don’t always want to be. But I am.

The question of the hour…

2008-08-13T11:39:00.004-05:00

Everyone has been asking me the same question as of late. “How are you doing?” Honestly I don’t know how I’m doing anymore. I’m surviving. That about sums it up. I’m doing the doggy paddle as I swim through all of this crap. Treading water really. Just trying to keep my head above water. I go under periodically but a kind soul is always there to give me a little help and pull me back up. And I continue on…

The days are beginning to blend and I’m not as aware of time passing because everything is a blur of caretaking, exhaustion, concern and sadness. We have little moments of joy each day and I hold those close to my heart...buoying me through to the next day.

I’m trying not to focus as much on the future…because that is just too much for me to bear right now. A future without David is unimaginable at the moment and best not to dwell on. I will have to face that future soon. But right now I need to get through today. Get through tomorrow.

My focus right now is to make sure that David and Alec are getting the care they need and trying to create little moments of serenity and smiles amongst all of this. Eat somewhat regularly and get sleep where I can get it.

David continues to remain David. Which is unheard of with a GBM at this stage. He still has his sharp wit and his memory is quite good. But he continues to get weaker by the day. Many days he doesn’t leave his room and when he does…he is only able to move a few feet before becoming exhausted and unstable. Watching the love of your life slowly fade away is brutal. And as I watch his body slowly fail…it is killing me inside because there is not a damn thing I can do. I can keep him comfortable and warm. I can make sure all of his needs are being met. I can love him. But I can’t stop the cancer that is slowly killing him. It’s an amazingly helpless feeling and I hate it. Actually there are a lot of things I hate about it. But really, who enjoys cancer?
So, I have no clue how I will survive the next leg of this journey but I will. Somehow. Because I always do.

And so it begins…

2008-08-01T12:26:00.002-05:00

We’ve begun the next stage of this amazingly difficult journey. Things have progressed and hospice is now on board. It’s not altogether surprising…and yet it’s still tears at my soul. We don’t need round the clock care but we do need pain management support.

We progressed to the next level last Saturday night. We have all noticed the gradual decline in his strength and energy. But Saturday night things spiraled downward at a rapid pace and it was bad. Really bad. He was acting a bit wacky and was in so much pain. The vicodin wasn’t touching it and there was nothing I could do except make him as comfortable as possible and try not to go mad watching David get sick and be in pain.

I don’t want David to ever have to be in that much pain again. Ever. So that’s where hospice comes in. We’ve met his nurse, who was recommended to us by a dear friend in the field, and she is lovely. She’s kind, gentle and proactive. Exactly what we need. She’s helping David to manage his pain and gently preparing us for the next stages as things progress. This whole thing sucks unbelievably…but at least we know that David’s needs will be met at any time of the day. I have someone to call if things go down that dark path again. I won’t be alone at 3 am, helplessly watching David in pain ever again.

So here we are. Just trying to get through the days. Sometimes just trying to get through the hours. David is still “David” and that is a gift…especially at this stage of the game. But it is still hell. No matter which way you slice it…and it will continue to be hell.

Alec is doing amazingly well considering that his entire world is topsy turvy. He’s taken up more of a “caregiver” role. He gets daddy his cane, covers him when he’s cold and pulls up his little chair to sit beside him…”petting” him as he likes to say, to make daddy feel better. Basically he’s mimicking everything I do. The other day he pulled up a chair and declared he was going to read to daddy. It was so precious and yet heartbreaking. To see our little boy by his daddy’s bed, reading him stories and curling up beside him. I’ve read many books on children and bereavement and they say that Alec being a part of events happening is the best thing we can do for him. Otherwise, if we hide it or exclude him from it…it will create serious issues down the line.

So, although the things he’s doing for David are simple…they mean everything to both Alec and David. And I’ve been told that these memories of Alec reading to his daddy and snuggling up beside him while he rests…will carry Alec through the years. Will help him somehow move beyond all of the pain and loss. Because even at 3 ½ they want to help and be a part of it. And being able to do this has given Alec comfort and a feeling of usefulness in a helpless situation.

So, I watch my husband and our son snuggle on the couch...watching shows or just resting together in peace. It’s one of the most beautiful and tender things I’ve ever seen…and it breaks my heart.

The slow progression...

2008-07-23T11:45:00.003-05:00

We’re all surviving here. It’s a new, surreal sort of survival. I had almost become used to the constant chaos. Watching David for the slightest hint of infection or change. Whisking him off to unending doctor appointments. The ER visits. The ICU stays. The continuous state of panic and worry. Living on adrenaline. Able to go days without sleep or even eating really. Continually waiting for the next shoe to drop. But now. Now it is different. The shoe has dropped and it’s sitting in the room my friends.

There is no more worry about scans and what it will show. Is there tumor recurrence? Are we safe for yet another month? Those worries are gone. Now we have the new worries. We’re no longer worried about it coming back…because it’s here. Now we worry about what it’s doing. Where it’s going? Watching David’s gradual loss of strength and the slow and subtle cognitive changes. Worrying about what will come next.

Some days I don’t even have time to think about everything that is going on or what this will all mean…because getting through the days are difficult enough. Both boys require more and more attention and it’s getting difficult for me to manage. Dave will have lists of things he wants to do or things he needs help on. Unfortunately, many he is unable to do and he has a tough time accepting that and it’s very frustrating for him. He needs more and more assistance with just daily maintenance like dressing and eating and that is difficult for him as well. Alec has become clingier with me and he’s become my little shadow…going everywhere with me. Understandable considering the changes he sees in his father. He wants to keep an eye on me at all times. He’s an amazing little guy, but no matter how grounded and emotionally stable he is…the changes in our life are taking its toll.

It can be exhausting to have two people completely dependant on you round the clock. I continue to loose weight although I am getting my three meals a day in. But I rarely get to finish because by the time I get both fed and am sitting down to enjoy a meal myself, one or both are invariably done and ready to do the next thing. The weight loss is great. It was something I have been trying to do for years…and yet I wish one could choose where to loose it. I used to be quite the voluptuous lady and now the girls just aren’t what they used to be! I could fit two gerbils in my bra cups at this point and they still might have room for a tea party in there! But we all know there are definitely worse things in life and this change I too will adjust to. Just kinda sucks. But enough about gerbils...because really, do they even like tea?

So what do we do now? That's the question of the hour. I don't want to just sit here and watch the slow progression of the tumor, but some evenings it seems as if that's just what we're doing. Some nights David is chatty and willing to do things. Others, he's exhausted and non-communicative. We continue to try and enjoy the summer days and continue to move forward, but it's getting increasingly difficult. The periods of "play time" are shortening but at least we are still able to have them. I guess that is what counts right now.

We will continue to enjoy the moments now and try not to not worry about the future or the unknowns that await us. The future will wait...at least we have today.

Change...

2008-07-09T11:28:00.009-05:00

Cancer has brought a lot of changes into our life…and not all of it bad. It seems strange to say, but it’s true. People have come into our lives that otherwise might not have if not for the big “C”.

Life if full of people coming and going…paths parting and reconnecting. Many people whom our paths might not have ever re-joined have come back into our lives to offer love and support. I’ve met some amazing people through all of this and many of whom I feel will be a part of my life for many years to come. People whom hither-to were more acquaintances have now become an integral part of my life. I’ve been amazed by the outpouring of support. Not to discount the men in our lives…but the ladies have been amazing as of late. I’m reminded of one of those goofy emails that always get sent about that says, “Get yourself some girlfriends.” I never quite understood that email. For much of my life, I had mainly men as good friends. I never really understood the whole “mystic” of girlfriends, but I’ve recently begun to.

These women have an amazing strength and compassion within. Without a second thought, they’ve become a part of our lives. They have looked at the chaos surrounding us and figured out what I needed most when I couldn’t tell them myself. They’ve gotten down into the thick of it and done the dirty jobs like cat boxes or bathrooms without even being asked. They have brought food, cleaned, and washed clothes and basically helped me keep my household running. They have seen the wacky stuff that goes on in my daily life and even seen the darker side of Cancer, and yet they keep coming back. They have taken David out and made sure he has had fun days and they have played with Alec and helped him forget about all the confusing changes going on in his world. They have made sure that I was taking care of myself as well…giving me breaks so I could get a quick nap in and they have called me out when I wasn't eating or taking proper care of myself. They’ve listened as I cried and offered advice when I needed it. And sometimes they just sat with me when I needed company and there were no more words left to say and they’ve made me laugh when things were so bad I thought all of the laughter had gone out of the world.

I never expected this journey or all the joy, sorrow, and change it would bring with it... but I’m glad I have you guys here with me now.

Cancer has not only changed our life, but it has changed myself as well. And that too is not altogether bad. I actually like the person I have become in the last two years. Or maybe this was always who I was…and it just took this journey to make me realize it. But I am more confident and grounded that I have ever been in my life. I know I’m stronger that I ever thought possible and I know that I’m a warrior and a survivor. Sometimes it feels so messed up that such good things have come from such a tragic situation. But I guess that is how life is…there is always a balance.

You can't always pick the roads life leads you...but at least you can choose to embrace the good things that happen along the way...

The world spins madly on...

2008-07-04T20:17:00.003-05:00

Yesterday was one of those days where you just want to curl up into a ball and cry. We met with Hospice. No, we’re not ready for them yet. But we have to choose one, so that when the time comes we have one in place. And this isn’t the sort of thing you want to be doing at the last moment. Pulling a random name out of a hat when it’s hitting the fan is the last thing we want to do. These are the people that will be insuring that David is getting the best possible care and that his needs are being met. They also will be making sure that Alec and I are not going under as well, as things progress. Not a fun day and not a fun topic. None of this end-of-life crap is. It’s heartbreaking and emotional. But we’re getting through it. Although more often than not, I don’t know how.

But we get through each day. Some good. Some bad. Most feel surreal to us. We look around and everyone’s lives are continuing on...as they should be. It’s summer. People are doing yard work, grilling, going on walks, and enjoying lazy summer days. We’re trying…we truly are. We are doing fun things each and every day. Memories that will have to last us a lifetime. And yet it’s still so difficult, because I feel as if we are standing outside the world...looking in. Everyone’s lives are continuing, but ours are standing still. We’re in Cancer World. A world filled with doctors, medicine, treatments, uncertainty, hope and fear. I don’t even know what it’s like in the other world anymore. This is my life. David is my life and Cancer right now seems to be encompassing it. I’m reminded of the The Weepies song “The world spins madly on.” This song just seems to resonate with me right now. Not that I wake up and wish that I was dead. I don’t want you guys freaking out and calling in an intervention. The melody just seems to capture my mood as of late. And there is a line, “I watch the stars through my windowsill. The whole world is moving. But I’m standing still.” It just seems to fit today. I tend to connect to music anyways. Throughout our courtship, marriage and life, it has played an integral part. Songs become something I identify with. Kind of like sign posts for the moments in our lives. Little musical moments that bring back specific memories and emotions. And this one just feels like where I’m at and where I’m going right now.

Below is a wacky link to a free search of it. Just click the play button on the top. I didn’t have the energy to dink about with it more. If someone knows a fast way to link a song to my blog…let me know.

SeeqPod - Playable Search

Choosing to live…

2008-06-26T13:06:00.002-05:00

We’ve talked to the doctors and they’ve presented the few options that are remaining to us. After long discussions and talking to the Radiologist, David has since decided he won’t be doing the low-dose radiation. It’s a innovative new technology that I think will be instrumental in the coming years with the treatment of brain tumor patients…but unfortunately, I think the tumor is too far progressed to make this treatment viable for us. The doctor felt it was a good idea, but more for research and for future patients. There is little hope it would do much for David’s condition. David decided that he would not spend the remainder of his time, 2-hours a day at the hospital and then hours at home recouping daily from the radiation treatments, if there really was no chance it was going to kill the tumor. David has also chosen not to take the BCNU Drugs either. The Neuro-Oncologist has said the chances of this one slowing the progression of the tumor was only 10%. Which, considering that the tumor has already grown to 2.5 CM, would only prolong the nasty effects that the tumor is beginning to exhibit.

Honestly I’m relieved by his choice. After talking to some of the nurses and therapists, at this stage of the game of David’s tumor, they agreed with his decision. Saying that further treatments could get pretty ugly at this point and the chance of prolonging his life in a way that David could enjoy it was nil. It took a lot of soul searching for David…but he decided to choose life. That may sound strange, but it’s true. He’s chosen to live his life as he always has. Enjoying the moment and creating beautiful memories. And he felt that continuing treatments may have prolonged his life briefly…but he would not have been living. He would have been a slave to the treatments and their side effects. And he wants to live. Relish the moment. Create memories with Alec and I. Live his life. Because it’s not always about how long you live but what you do with the time you are here.

His speech therapist, who we’ve grown quite attached to…and she as well to us. Told us that she thought it was the brave and right thing to do. She treats a lot of GBM patients and she said that she’s seen so many patients pressured by their families and loved ones to continue treatments…and it’s so hard on the patients. But they do it for their loved ones and she said it was horrible to watch.

And that brings me to my next rant. David has had more than one person tell him that he shouldn’t be giving up and that he needs to continue to fight to live. These people are more than lucky that I wasn’t around when they were telling David this, because they would have had to have deal with me then. Because these people are the ones who haven’t really been around in the last 2 years. Haven’t seen the surgeries. Haven’t seen David or the pain he’s been in. Haven’t seen all the things that have been done to his body. Haven’t seen his daily struggles and how he took each day with strength and optimism. And that he’s an amazing warrior that has continued to battle this little bastard in his head. David has chosen to live and enjoy his life. He's not giving up and there is no battle lost here.

It really pisses me off that because they are not ready to let go of David, they want him to continue treatments to make themselves feel better. Maybe keep him in the world a bit longer because they’re not ready to say good bye. But ya know…it’s extremely selfish to tell David that you would rather he do something which may cause him pain, will make him sleep his remaining time away and possibly make him extremely sick…because you’re not ready for this. None of us are. It’s the brutal reality. I’m not ready to say good bye either, but I love David enough to let him live and enjoy every moment he has now. Cherishing each memory. Because someday that will be all that we have. And David and I don’t want to look back at this time and have wasted all those precious moments in further futile treatments, or in fear and regret.

Bring it on...

2008-06-22T22:11:00.006-05:00

It’s been one hell of a week. The tumor board met and came back with their findings. We don’t have as many drug options as we had expected, only 1 really. Many of the drugs currently in use are inhibitors, which are similar to what he had just been on. And those obviously didn’t work so those were out. Others are different forms of chemo, but with a strong likelihood that they would mess up the tenuous balance in his G-Tract and bring back the C-diff, which also isn’t an option. So that just leaves us with just one: BCNU. This is one of the older treatments for GBM tumors. It tends not to be that effective, but it will be gentle on his system and not attack his body as much as many of the others. At this point they are looking to slow tumor growth, not stop it or shrink it. That ship unfortunately has sailed. The surgeon agrees that surgery is no longer a viable option either. The chance of another stroke, even more severe than the last is high. And that is no life for David. Completely incapacitated both mentally and physically.

There is also talk of doing low-dose radiation. It was an option we were discussing before the last round of chemo, and the option is still available to us. We have a meeting with our Radiologist on Tuesday to discuss it further and weigh the pros and cons. The chance that it would dramatically slow down the growth of the tumor is much higher than the medicines, but along with that may come extreme fatigue. He would be undergoing radiation 5-days a week for 5 weeks. Similar to his first round in 2006. But this would be low dose, meaning it would be spread out over a longer period of 45 minutes rather than a high beam for 10 minutes. The extreme fatigue is worrisome to me, because the time we have left is precious, and if David is completely wiped out and non-functional…the valuable time gained would be lost because David wouldn’t be awake or coherent to enjoy it. So, we’ll have a more definite game plan by end of week hopefully, but that’s where we stand.

This whole thing just sucks unbelievably. One of the few good things to come about in the last 2-weeks is that our David is “back.” After the last appointment with the doctor, when they told us that the tumor was back yet again…something must have clicked. Because he’s back. It’s been a gift. We are able to spend time at night talking, watching the rain and cuddling. The disconnect is gone and he’s focused and clear. I am so grateful to have this time with him and the precious moments we are creating. He’s even begun to play with Alec again and that too is priceless.

So, mentally David is doing extremely well. The doctors can’t explain it…but that’s David for you. And they never will be able to. Because David has proven time and time again that the mind is the most powerful thing in our arsenal. And that strength comes from within and that living life to the fullest, being optimistic, and believing…truly believing…can be stronger than pretty damn much everything else. But unfortunately, even David can’t beat the beast…just hold it at bay for awhile. It’s a sobering thought and one that keeps me up at night.
Physically he’s not doing quite as well. David has shown an ever increasing weakness. It’s absolutely infuriating to him and absolutely terrifying to me. There has been no new stroke damage, so what we’re seeing is either side effects of the chemo or more likely symptoms from the tumor growth. The little bastard is back and has begun to slowly fill the cavity that the surgeon made in David’s brain, what seems like a lifetime ago. The tumor has also begun to move inward towards the center of the brain and towards the left side. It is only a sliver so far that has begun to reach out…but the thought of it creeping along and spreading its tendrils out makes me sick.

It’s been a hellish ride as of late, and it doesn’t seem like we’ll be getting off any time soon. Some days are so hard. Keeping it together. Keeping my sanity. This is the love of my life and I feel so damn helpless. I’ve been told by so many of you that I’m amazing. I usually want to either laugh hysterically or cry when I’m told this. You must be on crack? Amazing? I feel anything but. I’m scared…I’m sad…I feel so lost some days and yet I keep moving. I cry. I cry a lot. And I think, amazing? Right. And yet, a dear friend told me that if I weren’t feeling this way…wasn’t crying…wasn’t scared shitless. I wouldn’t be human and that the amazing thing is that I keep moving forward. Taking care of everything that needs tending. Even myself sometimes, although not nearly enough.

A nurse once told me that I was amazing as I cried in the NICU. I looked up with that “you’re kidding me, right?” look and she just smiled and gave me a hug. Because she’s seen it all too often. She knew what our life must be like, what I was going through and she knew the road ahead. And she knew that it was going to be one hell of a ride. But she told me that I was so strong, because even in the face of all this, I kept my wits. I continued to be kind and gentle although the demands on me both physically and emotionally were insane. And she knew I wouldn’t be going anywhere…not now and not in the future. I was in it for the long haul, albeit not what I ever intended…but it never is, is it? She told me she has seen this, and sadly enough people do leave. More often than you would think. A horrifying thought. Completely unconscionable. How could you leave someone to fight this alone? Especially a loved one. And yet they do, because this isn’t an easy path and some people get off because they just can’t see it to the end. So, maybe I am amazing…but honestly, I think you’re all insane! I’m keeping it together, but there’s nothing amazing or pretty about it.

So, here we are once again. I continue to be grateful for those of you who have continued to stay in contact. Continued to call. Continued to help. Continued to visit. Because I know, that too is difficult. Seeing the slow decline in David is heartbreaking. And I know that continuing to come around is hard on many of you. But you do it and we are both eternally grateful. This isn’t for the feint-of-heart folks. But it is important not only to David, but to me. Having all of you in our lives makes me feel not quite so alone and it too is helping me keep this tenuous balance of survival I have going on in the home front.

Cancer is a malicious bastard that takes many things. Most poignantly of all…life. But there are things it can’t take. Like Memories. Our love. Our Strength. Our Dreams. So, bring it on you little mother fucker. You can take a lot of things away from us…and I’m sure you will. But damn it, there are some things I won’t let you ever touch.

What to say?

2008-06-13T07:45:00.002-05:00

I don’t know how to begin this post. I don’t know quite what to say...so I’ll just get it out. David had his MRI and there is tumor activity. Although intuitively I already knew…to hear those words just broke my heart. I can’t say how…I just knew. I don’t know if it’s because we’ve been down this road before and I could see those subtle changes or if was completely intuitive. But I knew and it was tying my stomach in knots for weeks. But now it’s official. And now we go down a new path.

Surgery is no longer a viable option. This is such a nasty insidious little tumor that the month respite from treatments after a surgery is just too long of a gap and it gives the cancer cells too much time to grow and spread. This has been painfully obvious after both his March and April surgeries. Also, the chance for another stroke and more severe and possible permanent paralysis is also much more likely. And thankfully, we have an amazing Neuro-Oncologist whom not only is worried about David’s treatments…he’s focused on getting Dave the best quality of life. What point is it prolonging his life, if he is completely incapacitated both mentally and physically? What kind of life would that be? It wouldn’t be living and it’s not our David. So. We have some options but not many. We’re getting closer to the end of this journey and although my heart is absolutely breaking, we both know it to be true. There are some drug options, also the doctors are steering away from anything which tends to cause digestive and colon issues. David doesn’t need that either. They will meet at the tumor board next week and discuss his case and see what options we have. Really, it’s a different drug or just Palliative care. Which would be to treat the symptoms, but no longer go after the tumor. At this point, David wants to continue with the drugs…as long as they do not interfere with him living his life and doing the things he wants to. We plan to spend a lot of time in the coming weeks trying to get out more. Play. Spend time as a family. Loving each other.

We’ve already had many serious talks…and I’m sure there will be many more to follow. David is so amazing. From the moment the doctors told him the results, there was a change. He came back to us…completely. Our David is back and it is such a precious gift to have him here again. To be able to talk to him and curl up in his arms on the couch. I can’t explain it. Although, I guess I don’t have to. I just think David is an amazing man, and whatever he puts his mind to…he has this uncanny ability to do whatever he needs to. Even up until this point, his symptoms have been minimal in comparison to the norm for this kind of tumor. Even now, two years later…he amazes the staff because even with everything going on with his body, he is doing remarkably well. He continues to be an inspiration to us all. And I hope in the coming days to always keep that with me. To remember that we can all do anything we set our minds to. And life is really all about what you make it. And that strength lies within us and we have the power to unlock it. Because we carry it with us always.

As far as David is coping. He is doing remarkably well…better than me I think. He said he feels at peace and I believe him. You can see it in his movements...You can see it in his face. He’s not concerned about what lies ahead, because he said he will be just fine. He is more worried about Alec and I. He says his road is much easier than mine. So, even now. David isn't concerned about himself, he is concerned about the welfare of others. Because that is and always has been who david was. A kind and generous man. And his greatest hope he said, was for me to be happy and at peace too. Bless his heart.

I just wish…I wish for so many things. But I wish that our roads were on the same path. David is my best friend and my lover, and we have shared everything together. And I never envisioned to be continuing this journey without him. He makes the world a better place and I absolutely love life with him. But for now. For now I will try to enjoy these days with him. Sitting on the porch at night watching the storms roll through, sipping tea and talking about all the amazing things we have done together. Trying to enjoy and capture these precious moments and somehow find peace myself.

The Benefit

2008-06-08T16:30:00.007-05:00

We had the benefit and it was a sold-out show! Simply amazing. So many people were there and it was so surreal to think that they were all there because of us. I can’t express how incredibly comforting and joyous that made us. To see faces that we hadn’t seen in awhile to others whom we see on a more regular basis. We reconnected with old friends, I made some new ones and it was an amazing night for us both! Some we never even got a chance to say hello to. The night went so fast, but I guess that’s what happens when you’re having fun. It has been so long since we had both gotten out and just hung out with friends. And although it felt weird to me, because it was a funraiser. And you all know how much I love asking for help. I was able to set aside my squeamishness about it and embrace the night and all it offered both financially and emotionally. I want everyone to know how very much it meant to both of us and I thank you. It is a night I will cherish, for it was a reminder that we are not alone…and have never been alone in this. And that you guys truly are my candles in the dark. Thank you…

It was a special night not only for the amazing emotional and financial support we received…but because for the first time since the surgery and subsequent stroke, David seemed more like himself. He was actually smiling and making jokes. He did so wonderful that night and I was so proud of him. And he even held my hand for a brief moment during the movie and gave me a little kiss. And that too was precious, because he hadn’t done that since the surgery either. It seemed like things were really starting to quiet down for a while. But sometimes I think we’re just sitting in the eye of storm. And as it swirls around us, we’re periodically picked up and tossed about a bit, and then thrown back down in the center. And whenever we get lulled into thinking maybe, just maybe the storm was finally dying down; we get knocked around again by it. And today is no different.

David was doing so well Monday, and then by Tuesday David began showing a slight cognitive change. Which we all know, in this game, isn’t good. He started forgetting things in even shorter time frames than what has become “normal” for him and at one point was having lapses in memory every 20 minutes. I called the doctor and they increased his steroids in hopes that this would help and that some brain swelling could be occurring. But unfortunately it hasn’t. He’s now having further cognitive issues and there is just a subtle but distinct change in his behavior. It’s almost like a regression back to about a month and a half ago. But unfortunately, we shouldn’t be seeing regressions. His mental and cognitive status should be slowly improving or at worst staying the same. But there is a definite, subtle shift going on.

This morning he saw a something that wasn’t there and my heart just sank. They have doubled the steroids since Tuesday and it hasn’t decreased any of the new cognitive developments. David has his regularly scheduled MRI Wednesday, unless there is a drastic or critical change with him...if that happens then its off to ER again. But otherwise, we wait until Wednesday. I feel it needs to be done, and yet I’m not sure I want to see what it will have to tell us. I can feel myself gearing up. Bracing for the inevitable roller coaster ride. And I just feel so tired and scared.

The other night, as I was putting David to bed, he looked up at me and said, “I just had a weird thought…what if tomorrow I wake up and can’t remember who you are.” It nearly stilled my heart. And it took every ounce of strength to stroke his head and smile and tell him not to worry about it and to just get a good nights rest. I then proceeded to go downstairs and have a good, long cry. Moments like that stay with you. They make you bend and the weight of them are so strong I feel as if they could break me if I let them. So instead I cry. And then I scream at the universe. And then I pull myself together. Knowing that tomorrow is another day. And amongst all the crap, there will bright moments in the day. Moments that will make you smile. And I have to hold onto those too...

"Life is about not knowing, having to change, taking the moment and making the best of it without knowing what's going to happen next." ~Gilda Radner

Breath In... Breath Out...

2008-05-26T19:36:00.002-05:00

A dear friend of mine commissioned a little warrior woman goddess for me by an artist friend of hers. It’s a beautiful piece incorporating wirework, beads and other little wonderful trinkets. And it has the words “warrior” woven into it. It’s a cherished gift that gently helps to remind me daily that I am a warrior and that I have the strength to get through this. The card that accompanied the gift read, “Breath In…Breath out…repeat. “ I’ve hung the card as well. Something so simple…and yet so important. When it hits the fan, as it seems to all too often to around here, I try to remember this simple mantra.

On the front line, things seemed to have settled down a bit around here. We’re by no means in peace time…just a respite from the war going on within David’s body. We’re getting into new routines and learning how to navigate the latest turn this journey has taken us. David is recovering at home. There are fewer bouts of confusion and he’s having more moments of connectedness with the family. He’s begun his new chemo treatments and those seem to be going smoothly as well. It’s a bit different this time, since he’s receiving these intravenously, and previously his chemo was always by pill. It’s that whole wacky blood brain barrier thing. It’s extremely difficult to cross and thus, brain cancer patients tend to have pill forms of chemo. But he’s received 2 treatments and his body is tolerating it well. It’s an eye opening experience to be amongst all of the other patients. Cancer truly doesn’t discriminate. All races. Young and old. Men, Women and Children. And as I watched…It made me think. I’ve always thought brain cancer was especially insidious because of how it not only attacks the body but the mind. Effecting memory, insight and behavior. But in truth, all forms of Cancer are insidious. I just happen to have the inside track on the brain tumor kind. But each and every person going through this battle and fighting with the malignant little beast has their own equally nasty shit to deal with. And I commend every single one of you. All of the warriors….both patients and caregivers. Because it can get quite brutal out there.

But we’re doing it. Getting through the days. Just getting through. We spend entirely too much time at the hospital. Enduring treatments, doctor appointments, therapies and an unending battery of tests. I’ve been mistaken on more than one occasion as an employee in numerous departments and have even begun to get the employee discount (unasked for) in the cafeteria. You know I’ve been here too much! And when I’m walking down the halls and in the period of 5 minutes I have had a couple of nurses, a resident, a physical therapist and a doctor wave at me, I’ve realized just how much a part of the institution I’ve become. It’s surreal but this is my life. This truly has become my second home. Although on some levels I absolutely hate this place, for all it symbolizes and reminds me of. Strangely enough, despite all of the pain and fear that I associate with this damn place, I’ve also become extremely comfortable here. I have spent way too much time here over the last 2 years and the hospital and its staff have become a very big part of my life. For better or worse.

I’ve even found myself gravitating to the 5th floor just because I’ve spent so much time there. Both in the Neuro-ICU and the Neuro –Recovery wing. I’ll see nurses that have cared for David in the past and some even stop to chat and find out how we’re doing. The staff there is phenomenal and I am eternally grateful to have them in our lives. Many have gone well beyond the call of duty getting us resources we needed or just lending a shoulder for support. Many have taken care of David on more than one occasion and have gotten quite attached to him themselves.

You can see how that attachment has now begun to affect them. I’ve noticed a change in many of the staff in recent months since David’s last surgery and subsequent stroke. For many, David was the poster child for optimism and he made us believe he could beat it. Even the nurses, who have seen so many before and after him come and go…they began to believe. You could see it in their eyes and how they spoke to us. But now. But now he looks more the “part.” He looks like a GBM patient and it is disconcerting to all of them. Because they have let their walls down and he’s become a part of their lives too. And now they’re beginning to see that David…although absolutely amazing…is not omnipotent. And you can see the profound sadness in their eyes. Some have begun to distance themselves already, as if stealing themselves. Others who were once sassy and playful with David are now quiet and gentle. Many that David used to chat with and tease, he no longer acknowledges or even speaks to. Sometimes it is almost too painful for me to see. Because they have the look that I see only too often on our friends and family faces and is a mirror of what I am feeling myself.

Don’t get me wrong, their treatment is still impeccable. It’s just you can see how this latest turn has effected them...effected all of us. David is fighting a miraculous fight with that Glioblastoma Multiforme and although he was beating it down for an almost record 2 years. Things have shifted a bit. The battle is more equal now. And you can see how not only the Cancer…but the treatments and surgeries are starting to wear at David. Tearing him apart not only on the outside but from within.

Let them try it for a week...

2008-05-12T16:23:00.006-05:00

Well, I guess I brought down the house with the last post “Warrior Woman.” It was pretty raw and from what I’m hearing it stirred a lot of emotions in people. Didn’t intend it to. I was just putting it out there. Trying to release all of the crap that is going on in me internally…so I can continue to move forward and not get so bogged down in this stagnant place of sadness, fear and anger. It’s a fucked up situation and it will continue to be fucked up. I need to pull myself together without dwindling the few remaining emotional and physical reserves I have left, so I can keep plowing on ahead. Plowing on ahead would be an optimistic term at best for me to say at this point. Honestly it’s more like blind and stumbling in the dark. But I know eventually we’re going to see some light in this heartbreaking situation. I just don’t know when or how.

But onto updates…
David has since lost his job. Not due to the incredible people he works with, it’s just that his short term disability ran out and the only option was long term disability or nothing. It was one of the hardest things I’ve ever had to tell David…besides the day I had to tell him that he had a really nasty malignant brain tumor. That was a bad day too. But this day sucked because through all of his kvetching, he loved his job. It gave him focus and kept him moving and thinking. It gave him something to strive for and he felt like he was contributing to the family. This became more and more important as our finances became increasingly messed up due to the Cancer treatments and the frequent periods off work. Although he never intended any of this to happen, I know that working was extremely important to him. Both financially and emotionally. He always was a social person and work was someplace he could go and interact with people all day. And to tell him that he no longer was able to go back there, at this time, in a working capacity was awful. It was yet another blow and for him another thing the Cancer had taken away. God I hate this disease.

I on the other hand have begun working full time, so that Alec and I could have health benefits since those were lost as well. My job has been fabulous and supportive. They’ve taken me on 30-hours a week and given both Alec and me benefits. To say I’m grateful is an understatement. But trying to juggle 30-hours a week in work, being a caregiver to my husband, raising our child and then wadding through the paperwork, appointments and everything else that comes along with his disability is insane. I wake up in a flurry …getting both boys dressed, fed and moving. I continue at mach speed for the remainder of the day only to end when I wind down for 30 minutes before bed with a good book. I know I can’t continue at this pace, and yet what choice do I have? The support continues to come in from friends and family and they’re keeping up on all of our life errands that I never seem to have time to get to. And yet with all of this support…it’s still difficult.

How on earth do people do this without support, I ask yet again? I can’t comprehend it. The doctors release patients’ home, needing 24-hour support and yet look scathingly at you when you say this will be difficult. Not that I would ever not do it…just that it will be difficult. I ask just one of them to live a week in our shoes. Would their friends rally around them like ours have? Would their family come and help out their loved one while they’re at work? Let them try it for a week and then see how much more empathetic they are. Because it is hard…no matter how much love and support you have. It’s hell to watch the man you have loved for 16 years fade before you. To have him unable to care for himself and the frustrations and anger that he experiences and exhibits because of it. To have him have good moments and then be completely and utterly confused the next. To be trying to keep it together so your son can have at least some sense of stability and take moments away from the chaos to play and be a mom, and then do all the other stuff that needs to get done on top of that. I know. I sound bitter. It’s just staggering the lack of support for caregivers at this stage of the game. If the patient is in the “final stages” there is a bevy of support. But for where we’re at now…there isn’t much from the system. There are a lot of programs out there for the patients, which is critical as well. But very little for the caregivers. I’ve asked and been told, “Oh, you’re just the caregiver…that program is for patients only.” Don’t get me wrong. I’m not belittling what David is enduring by any means. He is going through hell as well. It’s just that the system needs to help out the people who take care of their patients, because they are what keeps the household together and they are the one’s that care for the patients. And to them…they aren’t patients. They are husbands, wives, mothers, fathers, children and friends.

Quick Clarification

2008-05-08T12:57:00.002-05:00

I just wanted to add a little clarification on my last blog. I guess I may have not explained it as well as I could have, but David is having the disconnect. He's very disconnected from both Alec and I and most of the world around him. It's not an uncommon thing with right-brain surgeries and only time will tell as to the extent he will come back. It's not that he doesn't care, it's just that he doesn't have as much emotional attachments he once had. Certain pathways have been damaged and he just handles emotion differently now.

Warrior Woman

2008-05-05T21:41:00.003-05:00

Well, where to begin. I have no clue where to start or what to say. It has been so insane here on so many levels and the insanity seems to have no end in sight. Our world has been shattered and I don’t know if I or anyone for that matter has the power to put it back together again. David survived the surgery and we’ve beaten down the Cancer once again. But at what cost?

David is at home and doing outpatient rehabilitation including: Physical, Speech and Occupational Therapy. Each day his strength seems to be increasing…albeit minutely. But over the weeks it becomes more substantially noticeable. He is able to walk across rooms with the assistance of a cane…and sometimes when he forgets his cane…he’s still able to do it quite aptly. He still needs 24-hour supervision and there are still many things he needs help with. He’s no longer delusional and seeing elements of our home that are not in existence…but he still tends to get confused sometimes. His short term memory is wonky at best and he has trouble focusing and processing simple tasks like using the Itunes or TV remote control. In his moments of clarity…it frustrates him. I can’t imagine the frustration he must feel at times, when he in unable to complete tasks that were once so simple. But more often he’s unaware of his inability to complete the tasks and feels he has no deficits mentally and few physically. Many of these symptoms are common with right-brain surgeries and clinically from what his body has endured are not that extreme.

For me on the other hand, they’re down right disheartening. David has become more distant and lacks a connectedness to either Alec or I. He sees us, and knows who we are but there’s a distance there. It is hard to explain. David was always such a passionate and romantic man. It’s one of the reasons I fell in love with him. He was always so tender and would reach out to touch my hand or kiss me. But now. But now, he tends to talk to me only about the next meal or what he may need. But not much more. He rarely reaches out to touch me or even smile. This too is not uncommon in right-brained surgeries. They tend to get extremely emotional or very distant. Obveoulsy David's brain went the disconnected route. And although I know this isn't "David"...it's the damn surgery, It’s breaking my heart nonetheless. Because I love him so much. He’s my soulmate and my lover. And these treatments are slowly breaking him down. Tearing away at him slowly…a piece at a time. Some nights, I watch him sleeping beside me. And I just cry. I cry for David. I cry for what we’ve lost. I cry for our future. And I cry for Alec.

I’ve been doing a lot of that lately it seems. Crying. I saw a quote the other day, “I may cry easily but I never give up.” It struck a cord with me. Because even amidst all this heartbreak…I know I will never give up. I may not know how I’m going to survive this…let alone get through the next 24 hours. But I will.

My dad the other day called me a warrior woman. He said something to the effect that I amazed him and that I truly was a warrior. I just laughed. David before the last surgery always used to say that as well. I used to tell David how amazing and strong he was, and he would say it was because of me. And that I gave him strength and that I was his warrior woman. Sometimes I thought it was so absurd. Me? The emotional Gemini? Are you kidding me? But over time…he helped me see the real me. The strength that lain within me. And through this whole nightmarish experience it is the one good thing that has come of it. I’ve learned that I’m stronger that I ever thought possible. I’ve learned that you have a choice of whether or not you will let events break you. And I’ve learned that I am one hell of a fighter. So, thank you David. Thank you for all your love, support and wisdom. Although I can’t talk to you right now. I have your words and your inspiration. Because you my love, are my warrior.

My momma always said…

2008-04-22T12:50:00.005-05:00

When I was growing up my mom always said, "Friends are family you pick for yourself." I always believed her…but until the last year and half that statement didn’t have the depth of meaning that it does now. In these trying months the support of friends and family has been amazing.

The blog that dear friends of ours have put together for us is beyond words. It's an incredible resource for us and yet another way friends have put their heart and souls into helping us navigate the insanity of our life with cancer. If you haven't seen it yet...it's titled:
Lend a Hand to the Fisher Hewett's: A place to find specific ways to help Dave, Skye and Alec as they kick brain cancer's ass.
I love the title! I can't believe the amount of time that went into creating this for us. It's remarkable and If anyone wants to check it out, it's at http://fisherhewetthelp.blogspot.com

The kindness, generosity and love that you all have given us has been astounding. I’m not just talking about the gift cards, food and financial support…which in itself have been absolutely staggering. But the incredible support we have received emotionally is precious and I will never be able to express to each of you how much of a difference you have made in our lives. Many of you have been there at all hours of the day, dropped everything to be with me during yet another surgery, you’ve called with support and listened as I cried, you’ve given me hope in those days where I felt the world was covered in shadows and you’ve run errands and basically helped me keep our life together.

Even when I was unable to express what I needed or even look beyond the moment…somehow you guys were able to figure it out and give us what we needed most. These days have been some of darkest of my life, but you guys have been there…standing with us in the darkness and holding a candle. Reminding us that there is always light and we are never alone. And that my friends is something that I will carry with me always.

I don’t know how we would have survived thus far without all of this support. I look at so many people around here and how so many are alone…and then you wonder why people’s survival rates are so low. Some things you just can’t do alone.

So this is a thank you to all of you. You guys know who you are. So many of you have sent emails full of kind words and prayers. And I thank you all. Although I haven’t gotten a chance to respond to many of you…I love the emails and your kind words carry me though these crazy days. So, please know that although I may not have time right now to get back to each of you. I thank you and am grateful to have all of you in our lives…

The universe threw us yet another curve ball...

2008-04-12T20:48:00.005-05:00

Just when we dared hope that things were settling down just a bit, the universe threw us yet another curve ball. David had begun working remotely part time, his lifting restrictions were lessened a bit and he was finally able to drive as well. And then the world dropped out from beneath us once again.

Last Thursday Dave developed an excruciating headache. He was barely able to walk to the car to get him to the ER. Once there, they found that he was bleeding again near the tumor site. Also, there had been not only some tumor growth but a cyst had developed as well. The cyst wasn’t a big deal but the fact that it was pressing on his brain stem and causing blurred vision was. This coupled with the bleeding meant that David would be going in for surgery once again. It was almost 4 weeks to the day since his last surgery.

David went in for surgery Saturday morning and then we began the waiting game. God I hate that game. The surgery lasted much shorter than expected and the surgeon came down to discuss it with us. As surgeries go, it went well. Keep in mind; the surgeries that Dave undergoes are not simple. They’re complicated and extremely dangerous. It’s amazing he’s had so many of them previously and basically walked away unscathed. Unfortunately this time we weren’t so lucky. They had to remove two blood vessels to get into the area they couldn’t get into previously to remove as much of the remaining tumor as possible as well as the newly formed cyst. Even doing that, they were unable to get the area where the bleeding had been, due to the fact that the surgeon would have had to go through too much “precious territory” to get to it. They were able to clean things up a bit in there but having to cut major blood vessels in David’s brain wasn’t a good thing. Unavoidable…but not good.

And then we just had to wait once again for him to wake up to see what and if any damage had occurred. While we waited the surgeon spoke with us at length about David. In his words, he said “I just love that guy.” He connects with all the nursing staff, residents and doctors in a way I’ve never seen. David even had one of the surgeon’s nursing staff, a seasoned veteran, telling the surgeon to “do well” on this one…he’s a keeper. We both got a laugh out of that one. As if the patient is an ass he won’t try as hard! But it was sweet of her to say it. His surgeon went on to say that David was an amazing man and the reason he come through these surgeries so well was less to do with him and more to do with David. He said it was all him and that David really was a hero…not like all of those people you see on TV. He said David is the real thing. He is able to get back up after each of these surgeries and still hope and fight. He is able to, even in the face of extreme adversity, to act like it’s no big deal and continue on with his life as if nothing big had happened. Full of hope for the future. He said Dave is a better man than most of us to be able to have death dangled like a carrot in front of him on a regular basis and to just act as if it’s no biggie. He got quite emotional and you could see how much David means to him. This is unusual, because surgeons tend to distance themselves out of self preservation and then they can focus on getting the job done, per sea.

His surgeon came down personally to tell us when David came out of the anesthesia and that he didn’t have the use of his entire left side of his body. And after further testing they were able to ascertain that he had a stroke. Not surprising considering the severity of the surgery, but definitely not good news.

This week has been the hardest and most hellish week of my life. It doesn’t hold a candle to any of the previous surgeries and doesn’t even compare to the day they told us David had a malignant brain tumor. Because each and every one of those times we had each other to pull one another through the darkest hours. To make the other one smile and dare to believe. But not today. Not this week. David has been pretty out of it due to the severe swelling in his brain as it tries to recover from the surgery. David has been delusional at times. It’s not at all uncommon seeing as what they had to do up there. But it’s been hell to watch. The minutes drag to hours and the hours drag into days. I have no real concept of time anymore. I’m living at the hospital as much as possible and yet trying to balance time between both David and Alec. It’s a daunting and at times overwhelming task.

But as the days drag on…we see improvements every day and the surgeon is hopeful that Dave will make a close to full recovery, if not a total recovery. The delusions are becoming less frequent and thankfully through all of this he has always recognized, Alec and I, as well as everyone in his life. It’s just his surrounding that tends to get a bit confusing for him. But he’s coming back from this. He has full use of his left leg already, albeit it is still week. He can lift his left arm up and off the bed and can grasp things in it already. This is phenomenal news, since six days ago he couldn’t move them period. His speech is coming back extremely quickly and should be back to normal shortly. And through rigorous physical, occupational and speech therapy it will all return. David is a fighter and he continues to fight even now.

So, I will try and keep it together and try to keep moving forward. I’m overwhelmed and exhausted. I have tons of paperwork and am unsure even where to begin. Our lives have changed once again and I’m struggling to adapt and keep the family together. But some days are hard and there are moments where I truly believe we won’t get through this. But they pass and I begin to trudge forward once again. David will pull through this and hopefully in the next couple weeks he will be returning home to us. I miss my husband dearly.

And you thought it couldn't get any crazier?

2008-03-31T16:38:00.003-05:00

A lot has happened in the last month and I’m not quite sure where to begin. David is doing well but the last couple weeks have been more than a little eventful. It’s strange, it’s been absolutely insane because of the non-stop stuff going on but at least none of it was critical. It was just difficult because there was so much being thrown at us and it was constant.

We had a recurrence of colon issues due to the steroids, an ER visit for continual hiccups for 15 hours, which precipitated nausea and David was unable to keep his meds down. Once it became that critical we went to ER and they gave him a muscle relaxant and sent us on our merry way. We didn’t know what to do; we’ve never been to the ER and then sent home again…I didn’t know how to get out! We ended up right back there in another week for different colon issues, probably due to the muscle relaxants. Lovely. So, David’s GI tract developed an Ileus…basically a sleepy Gastrointestinal Tract. They took him off the muscle relaxant and sent us home again. So, we had a couple scares this month but nothing we couldn’t muddle through and David was home...and that’s what counts.

Inter-mixed throughout all of this, the household had 2 rounds of flu come through. And not just your run of mil flu…this was the crazy nasty flu! Everyone but David got it. We think that the strong antibiotic he’s on for the C-Diff, which stays only in your gut, pretty much killed anything that happened to wander into his GI track. The rest of us weren’t as lucky. It was a puking party for days around here. I’m sure mom never realized that when she was coming up to help she would be doing this! And Alec, being three, doesn’t really understand when he’s going to be sick. So we were cleaning up puke in beds, on stairs and in the cars. Good Times…

We had that monster of a storm that dropped 14+ inches on us. I never realized until that day how very stubborn my mom is. She said I must have forgotten my childhood because she's always been this way! Now at least I know where I get it from! When it hit, she said she was going out to help me. I said “no” and that I worried about her knees. We’ll, when I came out from getting geared up, she was dressed and said, “I’m coming out.” And I knew that voice, because I use it so often myself. And I also knew that there was no arguing with her…this wasn’t a discussion. So, out she went and she’s a workhorse! She was shoveling like a maniac and went back out and helped me do it two more times. She also helped me dig out the mini-van when it got stuck in our driveway the next morning and ended up face planting in the snow when the mini-van became unstuck. So, you would have to ask her, but I think she’s had her fill of snow and puking.

We also had a broken sewage line, which intern involved large machinery, plumbers and the excavation of a 10’ hole in our front yard. Good times! The sewage line looked like a log from what I hear. We have an adorable old bungalow and at some point in the last 90 some odd years, the pipe shifted and cracked. And over time slowly filled with little tendrils of roots. So, the pipe became completely filled with roots…which intern backed up our sewer line. Thankfully my mom happened to notice a small puddle of water forming in the basement in one of her many stints down there doing laundry, and we were able to nip it in the butt before our basement completely flooded. So, with that pricey little adventure behind us…we now have a fully functioning water system once again.

As for David, he’s doing phenomenal. We’ve meet with his Neuro-surgeon numerous times, his Neuro-Oncologist and his Radiologist and we now have treatment plan…Huzzah! David will be beginning his Chemo treatments of Irinotecan and Avastin on Friday. This was the treatment plan I had discussed in my February 19th post.

As for me, I’ve have had a tough go of it the last couple months. Our life changed irreparably a year and half ago…and it has been in total utter chaos for the last seven months. And through all of this, I’ve discovered that one cannot continue in “fright or flight” mode indefinitely. Running on adrenaline continually has begun to take its toll on my body and I’m starting to get a little frazzled around the edges. I’ve lost weight, which isn’t a bad thing, but probably not the way I should have. I was working on an ulcer it seems...big shocker?! So, my doctor put me on something which reduces acid production. The stomach pains I was starting to have all too frequently have disappeared, so at least we caught it in time before I had a full-blown ulcer. I'm trying to take better care of myself. I won't be any good to anyone, let alone myself if I keep up at this pace. I don't know how I'm going to do it...but I'm going to need to start slowing down a bit, taking better care of myself, resting when I get moments and accepting the help of our friends and family...because I need to be able to take care of the boys and I can't do that if I am falling apart as well.

We've definitely had better times...but we've also had much worse times. So, we'll get through this like we always do and hopefully we're on the upswing!

David amazes and inspires…once again…

2008-03-09T21:19:00.003-05:00

It’s been a week since David’s surgery and the whole event seems so surreal. Last Monday David went in for the resection of his brain tumor. It was one of the best as well as one of the worst surgeries he has ever had.

We spent the night before doing what is becoming a tradition before a “planned” surgery. Depressing that we’ve begun a tradition each night before David goes under, but at least we’re doing something. We’re not just sitting at home crying and waiting for the world to end. We’re enjoying life and each other.

So, my mom watches Alec…and David and I go out for a drive. We drive for hours and just play music and chat. There is some talk of the surgery, our fears and the many unknowns that lay before us. But there is a lot more talk of what we will do in the coming months and years. We talk about life and where we’ve been. We reminisce and we also talk about the future. We talk about art, our son, and home renovation projects we can’t wait to begin. We talk about life after Cancer. It is a wonderful time and we listen to all of our favorite songs. Music has always had a rejuvenating effect on us, and we find playing all of this great music just pumps us up for the upcoming chaos. We go to bed feeling a bit more lighthearted and ready to face the next day.

And face it we did. David went in early Monday morning. Once they got the initial MRI done and got him prepped and sent into the surgery waiting area, I went over to the family center where I began the hellish task of waiting. They ended up giving us a huge room because they remembered us. You know you’ve been there way too often when the people at the family center actually remember you. But they gave us a room that isn’t usually assigned to families waiting for news from the surgeries because my group tends to be so large, they really didn’t know where else to put us! There was a constant stream of friends and it helped to pass the time away.

David was supposed to have a 4.5 hour surgery. We got the initial call from the nurse in the OR that he went under splendidly and everything was going well. An hour and 45 minutes into the surgery we got another call from the same nurse saying the doctor was done and he would be coming down to explain the how the surgery had gone in a few minutes. My heart stopped. It was 2 hours and 15 minutes earlier than expected and she hadn’t said it went well. Last June the nurse had said the surgery had gone great and the doctor would be down shortly. I couldn’t breath and the world seemed to stop. The room went silent as we all just sat there looking at that damn clock. The minutes dragged by and I swear my heart was pounding so hard it was going to rip my chest apart. It was the only thing I could hear. I’ve never experienced anything like it. It was like this loud hammer reverberating through my chest. I found out later that I was taking deep ragged breaths and probably hyperventilating a bit. I’ve never felt such utter fear. I kept waiting for the door to open and for them to say we had lost him or that the surgery had gone horribly wrong. But they didn’t.

The doctor came in and he looked haggard. My heart dropped and he quickly said that David was ok and the surgery went well. But it was a tough one. He also told us that although the surgery went well, we would have to wait a couple hours until David woke up to make sure everything was ok. They had been mucking around with some major blood vessels up there and there were some very real concerns. He then leaned over and gave me a hug, which surprised me. Surgeons tend not to get too emotionally involved…I think they have to…to survive. But I also know this surgeon has gotten quite attached to David. And that fact that he is so young and has a wife and child, and the fact that David is so damn likeable and so damn optimistic…I get the feeling the surgeon has decided that he will do whatever he can to help David survive this. It’s become personal.

But David woke up and was doing phenomenal…and we all breathed a sigh of relief. But I have since learned from the surgeon that it was more that a tough surgery. We’ve had this surgeon before and he’s always been confident and upbeat. Surgeons have to be to do what they do. They know they can do it, because they’re that good! At least that’s the attitude they have to have to be so good at what they do. And David’s is one of the best in the country when it comes to these nasty little bastards. Everyone is amazed when we tell them who our surgeon is and say that we are so very lucky to have him because he’s the best. And I believe it. I think if we had had any other surgeon; Monday’s outcome may very well have gone very different. Because this man, who’s considered one of the best, said it was an extremely difficult surgery. He joked that David had “taken him down…but that he was back!” They had an extremely tough time removing the tumor because it was very solid. This is neither here nor there concerning the Cancer element, but concerning the removal of it…it is quite important. It makes it much harder to get out because there is so little play as well as they can’t move and shift it to get at the blood vessels. Thankfully, this little mother didn’t have very many vessels at all, but it was attached to the major blood vessels in David’s brain.

So, they were able to remove most of the tumor, but had to leave little bits of it wrapped around the blood vessels, because to remove those would have killed him. They placed in the balloon that was to have radiation at a later date and sealed him up. Although the surgery was completed, there was a very real concern that David would have had some major strokes because of all the crap they did with those major blood vessels. But he woke up and looked me in the eyes and smiled. And my heart ached with relief. When he tried to speak, there was weakness and drooping on the left side of his face and his speech was slurred. I kind of freaked out, but the nurses said that he didn’t have a stroke. They can check for that sort of thing on MRI’s. But that it was most likely a reaction from the swelling of his brain or that there had been a little damage during the surgery and it would be permanent. And we had to wait once again. He was fine neurologically and his motor skills were great, he just had that slur. It was the exact same symptoms as he had had last October when he had begun hemorrhaging and had that seizure, but the symptoms began to fade by the next morning and within 24 hours they were almost all but gone.

Dave was out of ICU in less than 24 hours, which is a record, and into a normal room and raising hell with the nursing staff and dieticians who actually remembered him from previous stays. They all love him of course! David was up and moving within 30 hours and taking little walks around his wing. The physical therapists couldn’t believe it. The doctor came in smiling and told us David was a strong man. I think David even amazes the surgeon. They’ve never seen anything like it.

It’s been a crazy roller coaster ride and the ride hasn’t stopped yet. We have now learned that we won’t be doing the balloon treatment because when he hemorrhaged last fall, a few cancer cells ended up above the tumor site. This isn’t awful news…but it’s still not good. I think the surgeon has much more immediate concerns about the tumor site than a few stray cells, but this means that the balloon won’t hit those cells. And they can’t do this form of treatment unless they are sure they are able to cover the entire site…so it is no longer a viable treatment. The balloon will stay in and David is a bit bummed about that. It’s left a lump on his otherwise lovely shaped head. But, as we keep reminding ourselves…it really is nothing considering how well he’s doing. So, in keeping with firsts…they released David in less than 2 1/2 days after major brain surgery. He was healing well and they knew he would take extreme care of himself at home…and I watch him like a hawk. And they were more concerned about him catching something else, which could be debilitating at this point. So off he went. Crazy…

Tuesday we will meet with the Neuro-Oncologist, Radiologist and Surgeon to discuss our next path. They all have ideas and David has an entire tumor board that is watching over his case as well. He’s made connections with many of these doctors and put it on much more of a personal level I think. He’s not just a patient anymore…but also a man with hopes and dreams. And I believe they will do everything in their power to give him a chance to make those come hopes and dreams come true. We may end up doing the Chemo plan I had discussed previously, before they decided on the balloon. Or there is also some discussion on doing some sort of new, low pulse radiation therapy. I guess we’ll just have to see…

But, I think we came very close to loosing David last Monday. Closer that I really want to think about honestly. But we didn’t. And every day we are grateful for the day and the precious moments we share. Life is too short people and too precious. I’ve always felt this…and in the last year and half David and I have begun to worry less about the stupid stuff and enjoy life’s simple pleasures. But I feel like we turned yet another corner on Monday. It was a not altogether gentle reminder of how messed up this situation is and how very dangerous it can be. But I don’t think it’s made us any more weary or scared than we were before. But I do think it’s reminded us to really enjoy life. Why put off going outside to play or taking a walk in the rain or making that piece of art…the errands will always be there. The house and all it’s mess will always be there. But Alec won’t be 3 forever…so we should enjoy these moments. Tantrums and all! Because life is moving along at a brisk pace and it’s all we can do to keep up with it.

So, we’re trying to worry less and less about the mundane stuff…because it will always be there and we’ll get it done eventually. But if a moment presents itself. A friend stops over. An unrealized art piece keeps nagging at our thoughts. It’s a beautiful day for a walk or a drive or whatever. Then do it. Because no matter how shitty this situation is, it could be worse and we are so very lucky to be where we are right now. And I am so very blessed to have such an amazing person in my life…to be sharing my life with David....my best friend and my soul mate.

Our love will chase the clouds away…

2008-03-01T15:14:00.009-06:00

I just came across a mix tape that David had made for me way back when we were dating in 1993 (I can't believe that was 15 years ago!)

I absolutely loved this song then and what it had to say. Ironically, it is more apt now that it was then. Strange how life leads us down different paths than we expected to take. But I know this; our love will chase the clouds away.

Hope you enjoy the song…
But be patient...it takes awhile to load.

http://www.skyestudio.com/blog/cloud.mp3

Quick Update…

2008-02-20T20:29:00.001-06:00

This week is definitely not turning out how I expected it.
David’s Neuro-Oncologist met with the Tumor Board and after an exhaustive review of David’s current condition they all came up with a new recommendation for a treatment plan.

Since there is actual tumor activity, the surgeon felt that because it’s in such a “prime” location for surgery, they should go in and get any new growth out of there. This way the drugs will be more effective and have to work a lot less. This surgeon is phenomenal and we are blessed to have him in our life. Many nurses have told us that we are very lucky to have him because he is renowned in the field and extremely good. He’s pretty high up there at Froedtert and I guess having him solely handling one’s surgery is quite impressive. He’s grown quite attached to David in the last year and we know he will do everything in his power to kick this thing. So, if he says we need to do surgery. We trust him.

Also, David’s Radiologist got in on it too. I have no clue how many people were at this meeting discussing David…but it sounds like a quite a few. But the Radiologist wants to use the balloon. I don’t have too many specifics on this yet. But I do know David has wanted this since he was first diagnosed. I don’t think the first hospital offered it because it was such a new treatment and during his last surgery in June of 2006 this particular surgery wasn’t conducive to the balloon. But things have changed and it’s becoming more mainstream and they feel it will work extremely effectively on this tumor. The basic gist of it is that they will insert a balloon in the hole where the tumor was and insert radioactive seeds into it. This is very exciting since when he was first diagnosed they said he would only be able to undergo radiation once. Since irradiating the head is not a good thing. His first radiation a year and a half ago was pinpointed…but it still got swaths of his head. Now that they can go in and target a very specific and small spot, he can have a 2nd radiation treatment without as much concern for his brain and what these treatments will do to it. I have no clue if he will then begin the snazzy chemo I discussed in my last blog or not, so I guess we’ll all just have to wait to find out more specifics.

We go in Tuesday to meet with our Neuro-Surgeon to discuss the game plan so to speak and set up the surgery date. I was not expecting this and I’ve had some major freak out moments today. But we’ll get through this like we get through all the other crap we’ve been through. I wouldn’t say David is excited about this latest development, but he’s happy about the current “Plan.” He’s always thought this balloon thing would be good for him and we both have really good feelings about this new Chemo treatment.

Unfortunately we know the drill when it comes to these surgeries. Dave is getting mentally prepared and when he gets in the “zone” he comes at thing head on and he kicks ass. He always does extremely well in these surgeries and tends to recover at a surprisingly rapid pace. And when he gets his mental state ready, fired up and optimistic like he is now, he does phenomenal. I’m trying to get there…but I’m not quite there yet. I have every confidence that he will sail through this surgery and the new treatment plan. It’s just really hard when Dave goes under. The waiting while he’s in surgery, the days watching him sleep in the ICU and the following periods of uncertainty are hell. So…I shall take a deep breath and try to calm myself before the ensuing storm.

What I Wouldn't Give...

2008-02-19T19:43:00.001-06:00

What I wouldn’t give to have a blog posting that doesn’t involve tumors, Cancer or the Big “D.” Unfortunately, I won’t be getting my wish today. David went in for his regularly scheduled MRI and there was a change on the scan. There isn’t a big nasty tumor there…but there is tumor activity. Meaning tumor cell growth. The Neuro-Oncologist doesn’t feel it’s even large enough to warrant surgery, but it does mean that Dave needs to begin a different treatment.

We’re trying to look at this optimistically, although a part of me is devastated. The current treatment he’s been on has been hell on his body. He’s had more than 7 hospitalizations since last June’s surgery and he really hasn’t been the same since. This current treatment hammered his immune system and made it almost impossible for him to combat the C-diff as well and the numerous other bacteria’s and infections that I never got a chance to blog about. So, although it may have been extremely effective at killing Cancer…it was destroying his immune system and intern his body in the process. And he’s been taken off this particular chemo 3 times in the last 7 months just so his body could recover a little. So, unfortunately it’s not altogether surprising that there is a little activity because he has had weeks off the treatments which gave his body a break…but also gave those pesky little Cancer cells the breather they too needed to flourish.

Our Doctor was already formulating a plan after the last hospitalization when it became apparent that the meds were doing a number on his immune system and his body couldn’t afford another bout of C-diff and the ensuing hospitalization. So, he had already discussed David’s case with a bevy of people somewhere out east and he even spoke with the Grand Pooh Ba of the current trial he’s on and other big names in the field to discuss the next steps in David’s treatment. And the consensus was a popular treatment for GBM’s and patients are responding extremely well to it. So well that not only is it keeping that nasty tumor at bay…it is actually shrinking them…which until recently was unheard of. Hell, this drug wasn’t even an option or widely used 1 ½ years ago when David was first diagnosed. And now it is considered one of the most effective treatments for these nasty little bastards.

It will be a big change for us…but this may very well be the treatment we’ve been waiting for. It’s not as debilitating to the immune system as the previous two chemos have been. It will be taken via IV every other week. This will be a new experience for David since previously, it’s always been by pill.

So. I feel like we’ve both been struck down again. Sometimes I feel like we just keep stepping into the ring only to get one hell of a beating. We fall down and then get up again. It seems almost masochistic sometimes. But the alternative is far worse. If we were to just stay down when we got these beatings. Not get up. Not fight. That would mean game over. And that’s not an option for either of us. So, we pick ourselves up again. Lately staggering and not holding our heads quite so high. But we stand up and brush ourselves off and get back into that damn ring. We fight. This is a battle neither of us are about the loose. Yeah, sometimes we’ll sit on the floor and just cry for a while but eventually we do get up and head right on back out there. Some days I don’t know how we do it. Its funny…I get asked that all of the time, “How do you do it?” and honestly I haven’t a clue. All I know is that giving up isn’t an option and no matter how beaten up and bruised we are…we’ll get up. Because someday they’re going to ring that damn bell and not only will this round be over. So will this deadly game. And when it does. We’ll both be there. Together. Holding each other up and smiling.

Brighter Days Ahead…

2008-02-01T13:37:00.000-06:00

We have had yet another hospitalization under our belt.
On January 17th David received a blood transfusion. His hemoglobin and hematocrit counts were very low. This is not unusual for patients receiving chemo and his Neuro-oncologist decided he needed a packed red-blood cell transfusion. The nurses in the transfusion clinic were amazed that David had been on chemo for over a year and a half and had never received one…but we all know David is not your average bear.

They did a ton of compatibility testing to make sure his body wouldn’t reject it and it took 7 hours once the transfusion began. It was amazing to think that someone at some point donated their blood, which was intern processed and distilled down to just the core red-blood cells where they remained in storage until someone…and in this case David…needed it. It truly was a gift and I never really appreciated just quite how much of a gift it was. Within hours David was looking better and his counts were looking great. We went home but by the next day things were not going well. David began passing copious amounts of blood. It was quite scary. They didn’t think it was related to the infusion...but there were serious concerns that he was bleeding out somewhere and all of those precious packed red-blood cells were being lost.

We ended up in the ER again, which seems to becoming a habit on Friday afternoons. Why is it he always ends up in the ER on a Friday? One of our friends said he cringes every time he receives a call from me on Fridays…because more often that not it’s bad news. David was admitted to the ER immediately because they too were concerned that he bleeding internally somewhere. Once admitted to the hospital and after further testing they decided that he wasn’t bleeding out and they just kept a close watch on him. They think it was the C-diff back once again and reeking havoc on his body. They doubled his heavy duty anti-biotic and within a day noticed a drastic improvement and reduced bleeding. I wonder if the C-diff was ever under control after the initial diagnosis back in October?

But for the first time in 4 months David is actually feeling better. I think we finally have a handle on this and we’re moving forward. It’s been a hellish couple months. It’s hard to believe things could have gotten worse after David’s initial diagnosis…but these bacterial infections have been nasty. They also discovered yeast in his blood during this hospitalization. It was easily treatable but was probably why he had been running low grade fevers for weeks. We were concerned the blood bacteria had returned…but thankfully that’s gone. They’re unsure how the yeast found it’s way into his blood, but the most likely explanation is that with all the antibiotics he’s on…they have killed pretty much everything good and bad in his system. And thus yeast was able grow in his colon or stomach. And then it was absorbed into his body and found it’s way into his blood stream. It was easily treatable and we’re lucky they found it.

So, although all of these hospitalizations have been awful, they did serve a very important purpose. Both the blood bacteria and yeast in his blood might have gone undiagnosed for a long time if he hadn’t been hospitalized and they hadn’t been testing the hell out of his blood to see what was going on with his system from all the other stuff going on. And these would have become much more serious, even life threatening if they hadn’t been discovered.

This has been a reminder to us that things do work out. If not always in the ways you had envisioned. The doctors still can’t believe that David has been up and moving around in the last couple months considering what his body has been going through. His body has basically been having a war going on inside it for months. They're amazed that he was even able to function nominally...seeing as his pulse, heart rate and blood pressure numbers were extremely bad. They kept asking him if he was passing out or feeling lighthead. He felt nothing. Even with the blood bacteria at the stage of developement it was at, they couldn't believe he was up and walking about...let alone still going to work. But that’s my David. He is one hell of a fighter. He keeps fighting and never gives up. He's like the energizer bunny on chemo!

So, although 2008 isn’t starting out as well as we had planned, we're heading in the right direction and brighter days are ahead...

Year of Hell

2007-12-31T20:45:00.000-06:00

Wasn’t there a Star Trek Voyager episode titled similarly? If I remember correctly, it was quite a hellish year for them as well…although blissfully they were able to erase that long tragic year by the destruction of some ship or another and began anew. If it were only that easy? But I’m hoping that with the New Year, we too will begin anew. No exploding ships here to erase this hellish year, but I still hope to put it behind us. The rebirth of the New Year in itself gives me hope and the strength to begin again.

December 16th David was hospitalized once again. He was in pretty bad shape. The C-diff had come back for a 3rd time and basically his system hadn’t recovered from the first two bouts and it took him down completely. Although he was still on two antibiotics for it, they didn’t seem to be even touching it. I learned later that this particular chemo that David is on kills double dividing cells or some such. So, it’s quite effective against Cancer but unfortunately the colon has the highest number of double dividing cells occurring naturally as well. So basically, the chemo is doing a number on his body as well as the Cancer. But anyways the C-diff was back and we were going down the road to dehydration. I wanted to try and catch it before it became as critical as last time and he ended up in ICU with possible organ failure again.

We took him in and initially they gave him fluids in ER and then sent him home. He took a nap and when he woke up I informed him that we were going back. He looked ill. Extremely ill. We went back in and they admitting him and he ended up staying in the hospital 9 days until he was released Christmas Eve. The first day was filled the usual flurry of testing and what not. They were still concerned that he was not and has never tested positive for C-Diff and through the extensive testing, they discovered that not only did he have C-diff but also he had an extremely nasty gram negative bacteria in his blood called Klebsiella. He began a third antibiotic for that and only until a few days later once it was under control did I find out how deadly that virus was. It can take down the most healthiest of immune systems and if gone untreated is deadly. Lovely. Of course they have no clue how he contracted it, but I have a few ideas about that as well. It had to be injected directly into his blood stream, and since the only poking, prodding and injecting going on was in the hospital…you do the math. But his body responded well to the drugs and the doctors were extremely surprised but happy to see it gone so quickly. The C-diff on the other hand continued to persist. Dave had a whole bevy of doctors on his team. He had Medical doctors; GI doctors and then Infectious Disease were brought in as well. Of course, each set of doctors would insist he didn’t have C-diff and that it was the chemo and that he needed to go off of it. I would then ask if they had contacted David’s Neuro-Oncologist. Of course…none of them had and there was no way in hell he was going off of the Chemo until his oncologist concurred. And they would get a bit belligerent and then one by one they would end up proving that it was in fact NOT the Chemo. More tests were run and those pesky pseudo membranes were found once again…and not just a few. Hundreds were in his colon. That pretty much tied it up for the GI team. It’s C-diff. Infectious disease were an entirely different story though. Most of them were total pricks. I’m sure they were extremely competent in their fields, but their people skills sucked. They tried to take David off his chemo as well and at one point I got extremely irate with one of them when I found out that they pretty much had intentionally kept David’s oncologist out of the loop because he was insisting the big D wasn’t the chemo. The Infectious Disease guy said that David had only been off his chemo for 2 weeks the last hospitalization and that they felt that he needed to be off of it for a much longer period. That was it for me. They weren’t communicating with the oncologist and yet they felt it was a good idea to “test the theory” that the chemo was causing the symptoms by taking him off it for say, one month or two? I finally asked him if he had ever fully read David’s file? And that if he understood that if he took David off this particular chemo for let’s say…2 months, that the C-diff was going to be the least of our worries. He stopped talking then. And I told him we weren’t going to discuss this again until we got a call directly from our oncologist. And in the end, it wasn’t the chemo. I have no clue why, and it gals Infectious Disease to no end, but his C-diff doesn’t test positive.

Christmas Eve David was released. He is by no means healed, but he’s better and it’s more under control and his team of medical doctors felt that the same protocols he was getting in the hospital could just as easily be administered at home. And the longer he remained in the hospital, the longer he was at risk for contracting something else. I really like the medical team. They and the nurses were absolutely amazing. I bitch about the wacky shit that went on. But there were a ton of extremely good doctors and nurses on David’s case as well. And they watched out for him and went way beyond the call of duty to keep him safe, healthy, comfortable and happy.

So here we are once again. Our heads aren’t held quite as high as they once were. Honestly, we’re both having a tough time. This truly has been the year of hell for us. Ironically enough, 2006 was easier even with the coming to terms with the fact that Cancer was now an unwelcome part of our lives. This has been hell and David has said on more that one occasion that these battles with the bacteria have been harder on him than the Cancer. I know that he wouldn’t even be having these if he weren’t for the Cancer…but they have had a devastating effect on his body. One nurse told us that every day spent in the hospital, it takes your body 1 week to recover. He was in a hell of a lot this fall and it’s taken its toll. It’s affected his strength and his immune system. But worst of all it’s affected his hope and determination. Somehow we’re both trying to put all of this behind us and move forward. But we’re tired. Tired of the C-diff. Tired of all meds. Tired of it all.

Sometimes I lay in bed and watch him sleep and wish that life was more like the movies. I wish we could ram that ship into some time vortex thing just like they did in Voyager and it could all be reversed. All of this crap would just go away and we could have our life back. We could be like the people we see on the streets. Living a life without fear and sickness. But although we have and always will have a fairytale-like love…the rest can’t be wiped away. Cancer is part of our life right now. Not to say it will be forever. But it will be here for today and probably tomorrow. So, somehow we have to move beyond this year and wrap one another in our love and hope. And somehow rise above all of this like a Phoenix from the ashes and begin anew. New years are for new beginnings, right? Here’s to a new year filled with hope and good health.

Winter Wonderland?

2007-12-14T09:25:00.000-06:00

Well, I’m not sure where to begin this post. A lot has happened in the last month. As for the fluid on David’s brain…that seems to be going well. He has been getting regular scans and they tend to show either no-change or a slow recession of the fluid. This was expected and as long as it continues to slowly go down, the surgeon is happy. And if the surgeon is happy, I’m happy. This process may take months and months. Unfortunately, until the fluid has completely dissipated, David’s lifting restrictions will be in place. No more than 5-10 lbs. Dave’s not altogether thrilled but I told him that although it sucks…it’s a minor price to pay if he doesn’t hemorrhage again and end up in the hospital.

As for other health issues, the big “D” seems to have reared its ugly head once more. It’s not as bad as before and once Dave started showing strong signs of it, we tried to be as proactive as possible. About 2 weeks ago Dave ended this really expensive, but obviously extremely effective antibiotic. Within a couple days of going off of it, he started showing the beginning signs of C-diff again. Dave hoped it was just a bug…but by Friday it was apparent it wasn’t. We called the doctor and after a lot of hoo-ha that I won’t even go into here, they prescribed the pricey meds once again. Just to give you an idea, with insurance it’s $1,200 a month and without its $3,000 a month. Insane. Seeing as he very well may be on these pricy little gems for awhile we looked into doing mail order which cuts the cost enormously. The assistant had never done this before and it ended up quite the mess. We got that straightened out, but then we didn’t realize mail order drugs through our insurance takes up to 5 days to process. So, although we were having them overnighted, we still might not see them for a week. We ended up calling back the doctor to get a 5 day prescription from a local pharmacy to get Dave through until the rest came. The insurance promptly declined this scrip because we already had a prescription pending for this medication and they don’t really care how long it takes you to get it or if there are shipping issues. I was so pissed. We’re trying to be proactive so Dave doesn’t end up in the hospital once again, which intern will save them boat loads of money. But…in the end we ended up getting a 3-day supply of the meds at full cost…which ended up being over $300. Lovely. But it will be worth it if we can keep this nasty bacteria at bay.

The mail order stuff arrived yesterday and now we’ve got a 3-month supply. Hopefully David will begin to feel better soon. He’s not severely dehydrated…but I’m sure he is a little bit. He’s exhausted all the time. He runs a low-grade fever intermittently and all and all feels like crap. He has really good moments and then really tired moments. But his body is going through a lot and he’s back at work and I’m sure that’s taking its toll as well. We’re just trying to make sure he’s rested and getting as much food as he can muster in him.

As for me? Who knows. I’m tired. I’m extremely tired.
It’s been the longest year and half of my life and some days I feel like I will never see a light at the end of all this madness. Like Dave, I try to keep my spirits up but some days it’s harder than others. I hate seeing David so sick and pale and it’s just tearing me up inside. I feel helpless a lot. I feel sad sometimes. I feel angry sometimes. But I just keep trying to move forward and keep the family going and barrel ahead towards the light at the end of this damn tunnel. All the snow and winter drearies hasn’t helped either. We invested in a snow blower this fall, and it’s the best investment we ever made. Due to David’s weight restrictions, all of the snow blowing and shoveling has fallen on me. “Bessie” is a work horse and she’s helping save my back. Yes, I’ve named the snow blower. You may laugh, but we’re bonding out there! But Bessie has been awesome and made this whole winter wonderland a bit more wonderful and a bit less messy.

As for the other stuff going on in our lives? I know, it’s hard to believe but we actually have a life beyond all this crap. At least we try. Alec’s birthday party was last weekend. He shared it with his best buddy Matthew and they had a blast. We held it at Pump It Up again this year. It’s amazing what a difference a year makes at this point. Last year they needed help getting on pretty much everything and this year they were running amok and climbing, sliding and jumping all over. Some needed help on the big slide or rock wall, but that was about it! Alec was so excited about having cake and blowing out candles…he talked about it for 3 weeks before the party. I ended up making a dinosaur volcano cake which turned out pretty cool looking. It was quite the pain in the ass though. I’m not becky-homecky by any means…and so me baking a cake was quite entertaining. Icing it was even more so. Thankfully there was red lava glaze and dinosaurs all over to mask the wacky icing underneath. I’ll try to get a picture of the cake uploaded this weekend.

The other big event in the household right now is Christmas! Alec is so excited. He seems to get the concept of Santa and talks about him all the time. The other day he informed me that Santa was going to be bringing him new dinosaurs. Really, I said? News to me! I better get on that! We also got a neat antique looking advent calendar to count down the days to Christmas. Alec is so excited about it that it’s sometimes the first thing he says when he wakes up in the morning. He wants to go check that calendar! So, although things could be going much better…we’re getting by. We’re trying to enjoy the holidays and quiet times at home. The house is all decked out and that seems to raise everyone’s spirits. The magic of Christmas! It can heal. I truly believe that. No chocolates as of yet, but I have the supplies and hope to make them later in the month. They may not be done by Christmas…but that doesn’t matter. They’ll taste just as good as New Year’s chocolates!

And it just keeps coming…

2007-11-14T13:32:00.000-06:00

Well, here we are again and I’m blogging yet again about the latest crappy event. I just need to keep reminding myself that we will survive this and to keep our heads down and keep moving forward. On October 27th on Saturday morning I woke up to David slurring his speech. He was walking up the stairs and was moving with no issues but I couldn’t understand anything he was saying. It was terrifying. I was amazed how calm I was…while in the back of my head I was panicking. I kept thinking stroke. Within 1 minute I was able to understand what he was saying, but it was still extremely slurred. David kept insisting that he was fine and that he was just really tired. I got him to come back downstairs so I could look at him in the light. Once we got downstairs, I noticed that the left side of his mouth was drooping. Somehow I remained completely calm with Alec in one hand and David in the other. I called the on-call doctor and was told we must get to the ER immediately. David still didn’t think anything was wrong, but he “humored” me. We dropped Alec off at the grandparents and as soon as arrived at the ER he was admitted immediately and they began running tests rapidly. They determined very quickly that it was not a stroke, but that it was probably a seizure. After the CT scan they found that he was hemorrhaging in the brain and that the massive amounts of blood was now pushing his brain over, which intern caused the seizure. His brain was 8mm off center and his brain ventricles were smashed together. Dave was rushed in for immediate surgery to release the pressure and remove the fluid. They drilled 2 holes in his head and were able to stabilize him. And the good times keep rollin…

Dave ended up in the NICU unit for 4 days. A drain was put in to dry to remove as much fluid buildup as possible. There were highs and lows during this period. At one point, when the fluid wasn’t cooperating, there were discussions of a more serious surgery to go in with a much more invasive surgery and figure out what the hell was going on and remove the fluid. The problem was that the blood had been in there long enough that his body had begun to already break it down and compartmentalize it into different membranes. As a last ditch effort before surgery, they administered some sort of anti clotting thing into his brain which did the job. He was able to drain a good portion of the fluid. He was moved to the Neuro wing for another 4 days of observation. During this period he missed trick-or-treating which broke David’s heart. He was also visited daily by speech therapists, physical therapists (who didn’t understand why they were assigned to him because he was showering, dressing and going for walks on his own) and various other doctors. He started getting quite surly with all of the testing. They just wanted to make sure his mind hadn’t been affected from the seizure or the subsequent surgeries but I think David was just done being in the hospital. We ended up having the same nurse he had back in June and she was amazing! She kept giving David hell and made sure he was taken care of and went well and beyond the usual call of duty to help him.

They ended up discharging him November 3rd. The fluid hadn’t gone down, but hadn’t gone up and was considered “stable.” They were concerned it would come back, but the concerns of Dave contracting something else in the hospital I think began to outweigh everything else. Dave was mobile and chomping at the bit to get the hell out of there.

Yesterday, after 3 subsequent scans over the last week and a half, we are finally seeing some improvement with the fluid in his brain. There is no new bleeding and the existing has gone down considerably. His brain in back on center and looks really good. He is still on seizure medication and will continue to be for the next couple months. He has the lifting restrictions of 5lbs which thrills David to no end, but happily he doesn’t have any driving restrictions. The surgeon quipped yesterday that his guess to let David out of the hospital worked out. I made a joke that it was probably more than just a guess, and he replied that really it wasn’t. They really weren’t sure which way was it was going to go and that it could have easily have gone either way and he was delighted it went in their favor and David is looking good. Very disconcerting…but at least it was good news. We will continue to get scans done to check now not only on tumor growth, or the lack thereof, and now fluid levels. It will take months to get rid of the remaining fluid. David’s body will begin to break it down on its own and reabsorb it.

From the advice of one of the physical therapists, David is now doing the Nintendo DS Brain Age game. She said that although David’s brain seems fine, after this many surgeries…paths have been cut and neurons won’t be firing the same and that the brain is a very resilient organ. And the more you work it, the more it heals and rebuilds pathways. And we told her about those ads that many of you may have seen lately about the Brain Age games and she thought they were awesome. A friend had bought Dave the Nintendo DS after his first surgery to keep him entertained in the hospital and go figure…it’s now also therapeutic. I plan to start doing it myself. It helps keep your brain young and more resilient. My mom even fell in love with it. It’s harder than you think!

We just have to remember that we will get through this. As the surgeon said, “It’s just a bump and a bad haircut.” It was quite a sizeable bump…but a bump none the less. Oh, by the way. David shaved his head. Half his head had been shaved once again for the surgery and then he was “molting” a bit, probably due to the chemo. It was a hard decision for David, but it was time. He didn’t want to look like he had cancer and he didn’t want to buy into the role of victim. But he’s not a victim. He’s a survivor and he should be proud of it. It looks great and he doesn’t have to do a damn thing with it in the morning. Alec loves rubbing it…it feels like a bunny.

Another “bump” that came with this latest excursion into the hospital is that he was removed from the trial. Not good news. The trial was how he got his meds and they were free. After a lot of stress and an enormous amount of help from our Neuro-Oncologists assistant we were approved for the drug outside of the trial. We needed to get our insurance approval, since it was not the traditional treatment for brain tumors. But since the traditional treatment had failed, we had that going for us. Also, his current drug is the standard treatment for Leukemia patients, so it is on the market. If it hadn’t been…we would have been screwed. But we were approved and then they found out it would be thousands of dollars a month, through our insurance. Insane but what we feared. Somehow, and I don’t know how and I don’t care, his assistant was able to work it through our insurance that we would get it mailed direct and it came out to a much more reasonable rate. I don’t know how people navigate all of the insanity without the help of people in the industry vying for their rights and working the system. After that was all approved, the prescription for his med’s were lost. Lovely. We had to go back through the entire approval process again, but we did and they finally arrived this morning. Dave was off chemo for 2 ½ weeks but he’s doing great and back on the meds and back on the road to recovery!

So. Here we are once again. Surviving and amongst all the chaos trying to keep some semblance of our lives together. There have been some dark moments, some happy moments, some terrifying moments and some just plain crappy moments. They make up the whole and we’re both still here to remember them…and that’s what counts.

Not so good times…

2007-10-26T10:36:00.000-05:00

Well. I have no clue where to begin. It’s been yet another lovely month for us. The month started out a bit better. Dave was recovering from his latest stint at the hospital and we were trying to pull our lives back together. We went to a Genesis concert down in Chicago and had a great time. It was fun to go on a mini-road trip and get away for a bit. The music and performance were awesome. We both love Genesis and they played a nice selection of their music throughout the years. There was old stuff, newer stuff and some of their more annoying “pop” hits that aren’t our favorites. But all and all it was completely enjoyable!

Dave was still feeling off, but doing much better on the antibiotics. I had planned a “Girls weekend” with some of the amazing ladies I work with and that was coming up quickly. I wasn’t sure about going in the first place and now with all that happened, I really didn’t think it was a good idea. But Dave knew I was hitting burn out and he felt it was extremely important that I get away…if only for a few days. So I went.

The trip itself was amazing. It was nice to get caught up on sleep a bit and get to know the ladies. We ate a lot of yummy food and would go and get coffee and just sit outside in the gorgeous weather for hours at a time. But on the downside…the C-diff came back and David ended up in the hospital again. It wasn’t as bad as last time. He went to ER for more fluids after meeting with the GI doctor and then ER admitted him into a normal room in the hospital, not ICU. He was in for 2 ½ days this time. I wanted to come home the moment he was admitted, but David was told he would be out by the next morning. But of course he wasn’t. Once he was admitted they went into the same routine as last time. Trying to control the big “D” and doing C-diff tests like crazy. They haven’t gotten a positive test result yet on C-diff and one of the doctors says that at this point, 8 tests later…they will never get a positive result for it. So, in essence they still have no clue what it is. But it must be either C-diff or something extremely similar to it…because the antibiotics for it are the only thing that stops it. David had me stay in Vegas. He felt it was extremely important that I re-group a little. It was extremely hard being there, trying to have a nice time while he was home in the hospital. But I understood where he was coming from. He felt fine…just dehydrated. And all he did was sleep in the hospital, but it just felt wrong for me to be so far from him. But I it worked out and David is out of the hospital and doing better. The Antibiotics for this round were a whopping $1500…and that’s with our kick ass insurance. That was a bit of a shocker, but what can you do. If it is actually going to kill this thing than it’s worth it. They say it is extremely hard to kill and it sometimes takes 2 rounds of antibiotics. And this second round of the pricey stuff is made specifically for this and not just a broad spectrum.

So here we are. David is completely exhausted. He’s on so many meds at this point we had to make a spreadsheet to keep track of them all and the different times to take them. It should all settle down a bit once he’s off both of the antibiotics and what not. Ironically this has been much harder on his body than the cancer treatments. He’s lost 10 lbs, looks so pale and is so tired all of the time. It’s breaking my heart to see him so sick and I wish with all of my heart there was more I could do.

A dear friend reminded me last night about something I had once said. We knew this was going to be a long road and we knew at times it was going to be hard fight...but damn. Some days it’s just hard to get up, smile and keep fighting. Lately I feel like the moment I even begin to feel optimism the universe just slaps us down again. But she gave me good advice. She gently reminded me that we knew there would be these dark times but that we just needed to tuck our heads down and keep moving forward and we would get through this. We will get through this and Dave will kick this somehow. We don’t need to know how…just that he will be ok. She said she saw on a card once, “If you’re in hell…keep moving.” That made me smile. So that’s what we’re doing. Just barreling along headfirst and trying to get through this. Hopefully things will settle down soon and my next post will be filled with renewed optimism and hope.

The highs and the lows…

2007-10-03T16:30:00.000-05:00

It’s been a rocky couple weeks. The show went well. It seems like a lifetime ago at this rate, but it went really well. Dave and I had a blast doing the show and it completely reminded us why we do this. It felt great to set up and the artwork was well received. We felt very nostalgic about some of the pieces and it made us rethink a bit about completely moving away from the printmaking. I do love some of those pieces…and they will probably always hold a special place in my heart. It also was a nice ego boost to have so many people complimenting us on our work when we really haven’t continued to evolve artistically or explore much in the last couple years. But we had a good time and rekindled that love of making art that sometimes fades amongst all the chaos and angst in our lives at the moment. We did a few sketches and had developed some definite directions we plan on taking our art. We feel like we have come up with a new fusion of glass and printmaking and I think we have a definite direction we’re ready to begin exploring in.

But the joy and unfettered plans of the future didn’t last long. Dave had been having digestive issues off and on for over a week and a half before the show had even begun. And by the12th he was not doing well at all. The weekend was long and we were getting concerned that this just wasn’t a nasty flu…but chemo related. He called in sick the following Monday, Tuesday and Wednesday. By Wednesday afternoon, I had him call his Oncologist again because he was obviously not getting better…but worse. He was pale…So very pale, not communicating much anymore and getting very lethargic. The doctor said that he should come into the ER immediately. We spent the next 2 1/2 hours waiting in the ER with a bunch of extremely ill and some extremely pissed off people. It would have been entertaining if David hadn’t been so ill himself. There were people there who definitely weren’t sick enough to be in an Emergency room and who were pissed about waiting for so long and were threatening to leave and then proceeding to run around the waiting area ranting, cussing and tossing things about. Leave then, I say. If you’re well enough to be running amok in the waiting room then you can go home because you shouldn’t be there anyways. You should be seeing your primary care physician or urgent care. There were people there pissed that they had a nasty flu and people were being seen ahead of them, not withstanding that some of these people who were going ahead looked to be on deaths door itself and one man looked as if his foot was about to rot off…literally. I just don’t get people sometimes.

But Dave and I just sat in the corner; Dave huddled in the fetal position next to me. Waiting our turn. Once we got into a room and they took his vitals, we were informed that he was going to be admitted. His blood pressure was dangerously low due to dehydration and they were surprised he wasn’t passing out. We had no clue he was so sick. We knew dehydration was bad…but I expected to see more signs from it. Dave was drinking so many fluids…but obviously his body was retaining none of it. We then spent 6 hours in the ER as the doctors decided where to put him. There was a lot of confusion as to how to treat him, since he was not only on Chemo…but an unusual trial version of it. But in the end, they opted for ICU because they couldn’t get his vitals to level out and his blood pressure was so damn low.

He ended up staying in ICU for 4 days. For the first 2 his blood pressure ranged from 75/45 to 92/65. The 70/45 numbers were more than worrisome to the doctors. They said if it continued to remain that low, his heart beat would start becoming irregular. They also said that if he had stayed out much longer…there could have been kidney failure as well. Holy shit. The decided that due the steroids he was on for his surgery in June, they had slightly depressed his adrenal gland so it was in a semi-hibernate state and was having a tough time releasing the needed hormones to bring his blood pressure back up after it dipped due to the dehydration. They were able to “wake” it up a bit and his blood pressure started to level out a bit. The other issue was that his digestive track was completely out of control and they couldn’t figure out what was wrong. The Oncologist insisted it wasn’t the Chemo…and the ER doctors starting doing tons of tests to rule out possibilities. In the end, although they never got a positive test back, they think he had C-Dif. A nasty bacterial infection in the colon. They started treating him for this after the first day in ICU, just in case and within 12 hours it was getting better. Unfortunately, C-dif is highly contagious via spores so Dave was in isolation throughout his entire hospital stay.

This last stint at the hospital was much harder on both of us than we ever expected. Dave was completely wiped out by it and I was unable to have all of the amazing support of friends around me during most of this, due to the fact that no one was allowed in isolation. I spent much of the time alone in Dave’s ICU cube, watching him sleep and making sure what meds they were giving him and if anything was being missed. He was so pale and so very much not Dave’s usual ebullient self. He didn’t talk at all. Never joked with the nurses. He was so weak.

As usual, everyone was amazing in checking in to make sure I was ok, but since I didn’t want to leave Dave’s side…I was alone too much I think. I wasn’t getting any sleep and I spent all my time either at the hospital or running to drop off Alec or picking him up. And at night, after all was settled in Dave’s room I would get Alec, go home and try to play and give him some sense of normalcy in his topsy turvy world. I was exhausted and strung out. Alec constantly talked about Daddy and would say, “Daddy’s sick” or “Daddy at hospital with tummy ache.” It just broke my heart. And I would try my best to smile and play and make Alec feel that everything was going to be ok. But when he went to bed, my heart would just ache. I don’t know how I could have done it differently. I needed to be there, because things were missed and I was able to catch missed doses and question doctors as they made rounds and keep in their faces to make sure they understood the severity of Dave being off his chemo for any length of time. And it worked. The doctors only kept him off chemo for 3 ½ days and Dave was released after a 6-day hospital stay. Although there were some issues with medication, the care he received in the hospital was amazing. The nurses, as usual, were lifesavers both physically and emotionally. They always knew what was going down, even when the doctors didn’t seem to know what the hell was going on. They were kind and caring to me and treated Dave with the utmost care.

Although this was only related to Cancer in the fact that Dave’s immune system is so suppressed due to the chemo…this sucked. In all likelihood Dave picked this up at the hospital during one of his checkups. People tend to get C-dif either 2 ways. Either they’ve taken antibiotics that killed off all of the good bacteria in the colon or you’re exposed to the spore in the hospital. It’s the number one place people get it. And when he was exposed to it, his body’s immune system was so depressed that he couldn’t fight it and it hit him hard. Although they never got a definitive answer as to what he had, best bet it is C-dif since the drugs he’s on got it under control. We’ll have to be more diligent now, since once you’ve had it; you’re much more susceptible to it. Dave’s on Acidophilus which will help nurture the happy bacteria in his colon and hopefully prevent another bout of this crap. Literally. My mom came up once again and helped me pull the house back together. She cleaned and entertained the little one so I could decontaminate the house. She did an insane amount of laundry, as everything needed to be laundered to remove any lurking spores left in the bedding or anywhere else. Alec had a blast playing with Nana and I got some much needed rest. Friends in all corners pitched in and brought over food and yummies. And other friends pitched in with errands. All in all, we pulled it together and got through it. I just wish we didn’t have to get though anything right now. I want some down time. Time to play and enjoy life. I want a day without worry.

It's all about Choices

2007-08-31T10:23:00.000-05:00

A couple weeks ago it was our 11th Anniversary. My…my…how time flies. We ended up hitting a movie at budget, Spiderman 3. It was mediocre at best…but it did get us thinking. Life really is all about choices. People say, “I had no choice.” But really, you always have a choice. You may not like the options, but you always have a choice. Neither of us likes the fact that David’s body is being bombarded by all of these chemicals. Or the fact that he had Cancer. But we do have a choice. We could stop enjoying and exploring life together. Stop laughing. Stop loving. Stop living. Or we can continue to move forward. Play. Laugh. Go on walks. Make art. Live.

So often, I will run into people and they say, “How do you do it?” You always seem so upbeat. How can you just keep going about your daily lives? But really that’s what it’s all about, isn’t it? You can’t let the Cancer beat you. You can’t let it define you. Control your life. This is definitely not where we envisioned being at our 11th anniversary, but the cancer is not going to own us. We choose to fight. To try to face the future with hope and without fear, which sometimes feels impossible…but the alternative is worse. We will stare “the beast” in the face and give it the finger and laugh. And then we’ll go out for tea!

As far as David’s health goes, he’s doing extremely well. His platelet counts dipped for a couple weeks, but they’re fine now. His kidney seems to be having a tough time with the new meds, but the doctor said it was nothing serious yet, just something to keep an eye on. The doctor even said that at least now we know David is taking his meds. Maybe they thought he wasn’t taking them since he showed no outward signs of being on chemo. I thought that was amusing. As for me, my neck, head and back is doing better. I’m no longer having the excruciating headaches. I’ve been to an acupuncturist a couple times, as well as a couple good friends of ours had us over to their house last weekend. Along with dinner, I received a deep tissue massage along with some acupressure and who knows what else. It did wonders and I was grateful.

So, I’m on the road to recovery. Thanks to everyone in our life watching out for me and making sure I’m taking care of myself. I’ve also been told by three different people in the last month that I need to begin meditating again. I haven’t been able to do any meditation or relaxation exercises since David went in again in June. I just couldn’t seem to go there emotionally. But, as my back can attest, I need to take care of myself and find a way to release all of this tension and fear…otherwise it will consume me both physically and emotionally.

A little reminder

2007-08-15T15:25:00.000-05:00

I received this in an email from David, as a gentle reminder that I too need to take care of myself. Because all too often, I put the needs of Alec and David above myself and even more so since David’s diagnosis.

This is what he sent…
"In the event of a decompression, an oxygen mask will automatically drop from a compartment above your seat...If you are traveling with a child or someone who requires assistance, secure your mask on yourself first, and then assist the other person."

So true. And probably something I needed reminding of. I’ve found that since the second surgery, it has taken much longer for me to bounce back emotionally. Finding more GBM cancer cells has hit me hard and I find it difficult to think optimistically of a Cancer free future. But somehow I will wade through all these fears swimming in my head and move forward. But right now, I seem to floundering about. And all the stress seems to be taking its toll on my body. I’ve starting having these insanely bad headaches two days ago, from you guessed it. Tension. My back is all knotted up and it’s now traveling to my head. When the headache first hit, and even the slightest movement would cause sharp pains to wrack my head…I didn’t think sinuses, tension, or any other normal malady. My first thought was brain tumor. Hypochondriac much?

It’s just that it was so bad and no matter what I did it wouldn’t go away. And then when I started getting nauseous from the pain, there were just too many parallels between this headache and David’s last year. It was more than a little disconcerting. David grounded me a bit by reminding me that his never lessened and that I have had brief moments of relief and he also reassured me that I don’t have a brain tumor. Too much stress yes. Possibly overworking my body and not taking care of myself…definitely. But a brain tumor. No.

So, here I am…feeling a little better. I’ve been taking it easy the past couple days, taking lots of hot baths and filling my work with the lovely odorous smell of my “bed buddy” which works wonders on my neck but has the oddest toasted wheat smell. Very interesting…but the hot compresses have begun to alleviate the headaches. So…lesson taken. I need to take care of myself. I know it’s important to take care of my family…but I won’t be much good to anyone if I let myself fall apart and am unable to care for neither myself or David and Alec.

What do you do when your husband just had brain surgery?

2007-08-09T09:53:00.000-05:00

Ok. Some people clean. Some people shop. Some people sleep. I do home renovation projects when I’m stressed out.

Before

After

So, this is what I’ve been up to the last couple weeks. We had already bought the bricks in spring, hoping to put in a mini-retaining wall in the front of the house for a garden. Once the whole basement snafu hit, the bricks just sat dormant in the corner of the garage. And life went on. Once we started to settle back into some sense of normalcy after David’s last surgery, I started to get a bit angsty. I had all this pent up energy and stress. I felt completely powerless against this damn tumor. And I realized…I can’t always control the fear. I can’t control the cancer. But I could do this. It gave me something to focus on besides all the crap swirling about in my head. So I threw myself into it. It was great. It took an insane amount of physical labor…much more than I expected. But it felt great. That little wall took 5 bags of paver dirt and rock, 93 bricks, 6 bags of manure, and 25 bags (40 Lbs each) to make that sucker! Whew! With David’s weight restrictions, he was unable to move any of the bags, but he could move 1 brick at a time. Which made him insane. I didn’t mind though. I relished the physicality of it all. It was a great stress reliever and it was great to finally do some sort of landscaping on the house. I have the bug now. It turned out so nicely, I want to do more! Dave did the putzy part of the wall. He leveled each individual brick on the first layer. Fun. But as you can see, he did a great job and the wall is level and sturdy. Then a couple of our dear friends came over to help us move, assemble and install the fountain. That was a beast, but worth it. We found it on summer clearance and decided...what the hell. It looks gorgeous and adds a wonderful calming affect to the back yard with the melodic sounds of water. Just love it.

A good friend of ours who has insane allergies decided to tear out her entire perennial garden. The flowers and plants were making her sick basically and she said we were welcome to them. So, we made a day of it. We met another friend from work and her husband there and we spent the morning digging out plants! Alec loved it. He ran around like a banshee with his little wheelbarrow and trowel for awhile and then decided to spend the remainder of the time playing with Maggie the Golden Retriever. Those two just love each other. Once we got a ton of flowers and plants dug up, Including: Hosta’s, Day Lilies, Purple Cone Flowers, Freesia, White Daisies, Stilby, a pretty green and white ground cover plant and some gorgeous Ferns. Once they were up and out of the ground we loaded them into “Sophie” our mini-van and our friend’s truck and proceeded to drive them across town and planted them into our garden. Mind you, we had tons more plants than we were expecting, so not only did we start to fill our little garden in the backyard but we put some on the sides of the house as well. It was a fun day and we are grateful to have such kind and generous friends in our lives.

The latest news…

2007-07-18T13:58:00.000-05:00

Alec is beginning to calm a bit from the upheaval at home. There haven’t been quite as many tears or tantrums…as things begin to settle back into some sense of normalcy. David hasn’t been sleeping as much and Alec is enjoying his sorely missed dad-time. He still gets upset that Dave can’t lift him, but enjoys crawling all over him on the floor. Alec still tends to loose it when Dave goes out or leaves the room…but that will pass in time…as it did last year.

We went in to see the surgeon last week. I love that guy. Not only is he good…but he has a great sense of humor. He has a very human and down to earth nature, which is hard to come by sometimes with surgeons…especially the good ones. But he talked about the surgery and how it had gone extremely well and showed us the post-operative MRI of David’s brain. It looks like he removed somewhere between a plum and orange sized portion of David’s right temporal lobe. Crazy, huh? David thanked the surgeon for his periodic calls to me during the surgery and told him how much of a difference it made at putting my mind at ease during the hours David was under. The surgeon said that he’s been on the other side, waiting for news while someone he loved was under and that it’s not fun and he now always tries to keep people informed throughout the process.

The surgeon has increased David’s weight restrictions to 10-15 lbs. So, it’s more than a gallon of milk, but still a heck of a lot less than Alec. He still can’t drive, but he’s allowed to begin working 20 hours a week remotely…which will be good both financially and for Dave’s state of mind. He’s getting a bit stir crazy. Last week, every day I came home from work…it looked like a tornado had whipped through the house…leaving chaos in its wake. David would begin projects, realize he couldn’t move or lift something and drop that one and start on another. By Friday, he had taken down our computer network twice, disassembled the TV so it no longer worked and a couple other things I can’t remember at the moment. At least he’s keeping busy, right?

We met with David’s new Neuro-Oncologist on Thursday. It went well and I think he will be just as good as or better than our previous doctor. He has a kind heart and also believes there is always hope and a reason to keep fighting. There was a bit of a frightening moment when the doctor told us there was a problem with Dave’s blood work and that, as of that moment, he was ineligible for the new trial he was supposed to be starting. His lipitoids, which is the white blood cells that fight bacterial and viral infections, were too low. His were 450 and they had to be 500 to begin the trial. Mind you, if his dropped which can very well happen while on chemo…he still could continue the trial. They just can’t be below 500 to begin the trial. We both were a little disconcerted by this news…Seeing as we’ve been told as of right now…until something new comes up the pipe…this is David’s best chance for survival. Good times. They drew more blood and we began the waiting game once again. Unfortunately, there is nothing we can do to increase his numbers…but wait. The doctor said we had a 1 ½ week window before we would be forced to begin a different trial. They don’t want David to be off treatments for too long, otherwise we loose the advantage we got by removing that large portion and a greater chance for more cancer cell growth. But thankfully, we didn’t have to wait long and his numbers skyrocketed in true Dave form up to 847 within days. So, David has been approved for the trial and began it Monday.

This is a phase 2 trial, meaning it’s on the 2nd round of testing and has shown promise among the phase 1 applicants for reduced or complete lack of tumor growth. Since this is such a nasty tumor and it has all of those damn invisible tendrils…it’s impossible to completely remove it all. Which is why David has to be on chemo to try and destroy the remaining cancer cells. This new trial is a chemo drug, Dasatinib, that has been previously used to treat Leukemia. He will be taking it every day, twice a day. Once in the morning and once at night. There will be no days off…but it a smaller dose than he was taking previously.

At first, I was worried about David being on Chemo every day of the month. But I realized the other day, as we sat there in the waiting room, seeing other tumor patients walk past (You could tell by the tell tale scar on their heads) that Dave was doing great. Many people in our same situation are having not only motor function issues but also cognitive problems. Some still have actual portions of the tumor in their heads, being inoperable for different reasons. Many are somewhat, if not completely, debilitated by the Chemo treatments…looking so fragile and sad. But then there’s David. Cruising at mach speed and looking as healthy as can be. And then I realize, that no matter how crappy things are getting, we are lucky. Very lucky. It could be much worse. People talk about how hard it is to get through Chemo…and how those were the worse 6 months of their lives. And yet, here’s David. 1-Year of Chemo completed and a 2nd started…and the plan to continue on it indefinitely until something else presents itself. And he’s moving forward. Living his life. Inspiring us all. Chemo is tough, even on the strongest of people…but we’re finding that having love, hope and strength can pull one through almost anything. Somehow we’ll get through this. Some days it doesn’t feel like it. Some days the Cancer seems to beat us down…looming around us like this oppressive presence. And some days we cry. But today we live and move forward. Today is a new day…

“So stop waiting until you finish school,
until you go back to school,
until you lose ten pounds,
until you gain ten pounds,
until you have kids,
until your kids leave the house,
until you start work,
until you retire,
until you get married,
until you get divorced,
until Friday night,
until Sunday morning,
until you get a new car or home,
until your car or home is paid off,
until spring, until summer, until fall, until winter,
until you die,
until you are born again
to decide that there is no better time than right now to be happy...”
~ Author Unknown

Here's the scoop...

2007-07-07T15:04:00.000-05:00

Dave went in for surgery on Monday June 25th, exactly one year from his first surgery. Different hospital and completely different experience. We got there at 5am and then were in his pre-surgery prep area by 6am. A tech came in and started shaving patches on Dave’s head to attach these wacky little electrodes to his head, so that they could do a special “Stealth” MRI that would map his brain. We were then informed that his surgery wasn’t until 2:30pm, not the original 7:30am time we had thought. Dave was less than thrilled. He was already starving and the thought that he was going to have to wait another 8 hours for surgery made him downright crabby. So, I called everyone and told them not to come to the waiting area, because we would be sequestered in this little cube until he went in for surgery. Of course, the moment I was done calling everyone, the nurse came in to say the surgeon had arrived and wanted to reschedule all his patients because he wanted to get Dave in first. We were relieved and happy. I think it’s always best to have surgeries done early in the morning, when the surgeons are still fresh and focused. I’m not sure why the surgeon wanted to do David first, maybe because it was an extremely complex surgery. Who knows. But we were delighted.

David was wheeled out 10 minutes later as I was madly calling everyone to tell them to get back out of bed and that the surgery was back on for the morning. Too crazy. The waiting area was quiet as I was the first to arrive, and I got a “cube” assigned to myself and friends and family since it was turning out to be quite a sizeable group that planned come. We had 5 chairs, a table, a lamp and a telephone. A s everyone started showing up, we ended up pulling another 3 chairs in accommodate our group. It was great having everyone there. It made the time past swiftly, and as they all regaled me with entertaining stories…I was mercifully kept distracted. We actually got 2 calls throughout the surgery. The first time the phone rang, everyone just stopped and just stared. I figured it couldn’t be good…but it ended up being our surgeon’s nurse telling us that they were “in” and it was all going well. Yet, another reason why I love this surgeon. Not only is he really good…but he understands people and how terrifying the whole waiting can be…and I guess this is standard procedure for him to have a nurse call periodically throughout a procedure to keep the family informed as to how it was going. The second call came about and hour or hour and a half later to say that they were done and closing up. Wow. His surgery was an hour and a half shorter than expected, which was a very good sign. The surgeon came down to say it had gone extremely well and that he had removed a large portion. I have yet to find out how much a large portion is, but I hope to ask him next Tuesday when we see him again. He said to go out and get out of the hospital for a while, because David wouldn’t be awake for at least 2 to 3 hours. So, a bunch of us left and went to Cheesecake Factory. Everyone I think was remembering how much weight I lost last time, since I basically stopped eating for a week…and everyone was on the food train making sure I was taking care of myself. So we went there and had a nice lunch and then when we returned, there was a note from David! Knowing David, this shouldn’t have surprised me. He was out of anesthesia and awake 20 minutes after the surgery. He told the recovery nurse to leave this message, “Love you Moonbeam.” It was 3 of the most beautiful words I have ever heard. He was awake and doing well.

He was eventually moved to NICU where he spent an uneventful night sleeping. He ended up taking more pain meds than the first time, but this wasn’t surprising since they actually removed a portion of his brain. By mid-morning the next day he was moved to a wing with other head trauma patients for recovery. So, all of his nurses were specialists as well in dealing with head and spinal trauma. They were amazing and kept diligent watch over David. They were surprised by his continued speedy recovery and we were walking the halls in no time. That night he ended up spiking a very high fever and there was a very real concern that there was something serious going on there…but then 4 hours later it was gone. Poof. On day 3 the surgeon came in to tell him that although he had planned on releasing him on Friday or Saturday, there was no reason to keep him in any longer and he could go now. This was Wednesday. Later that morning, as we waited for all of his discharge paperwork to go through, his Neuro-Oncologist came in to discuss the biopsy. That could have gone better. It could have gone much worse…but it definitely could have gone better. They found traces of inflamed tissue from the radiation last summer, some necrosis from dead cancer cells and they also found GBM tumor cells as well. It was a major blow to us. Unfortunately, it wasn’t too surprising given the kind of tumor David has…but it hit us hard. It was an extremely good thing we went in for the surgery and they removed a sizeable chunk, so many of those cells were scooped out as well. They also removed a larger chunk to remove as many as possible of those invisible tendrils this kind of tumor sends out through the brain, so we can begin a different protocol and beat this thing. Dave is now off the Chemo trial he was on, since Chemo wasn’t doing to trick completely. And we are planning on getting on a new trial shortly. This trial is quite exciting and there are many GBM patients who really want to be on it, but can’t since it is extremely difficult to get into. To be eligible, one has to have had a surgery recently as well as have already gone through chemo and radiation previously. So, one has to be in at least a 2nd or 3rd surgery, but can’t have done any other treatments beyond the standard. We’re very excited and lucky to be part of it. I’ll let you know more about it once I get all the “official” legal documents on the trial.

So, here’s where we’re at. We’re not quite as emotionally debilitated, as we were last summer at this time. But we’ve had some dark moments. Sometimes we wish we could live the life we once had…a life without cancer, fears and heartache. But unfortunately we don’t get that vote. So, we’ll keep moving forward. Keep fighting…keep living, laughing and loving. There are tears…but there are also smiles. There is a long battle ahead of us and we’re two more warriors who have entered the fight. And we’ll keep fighting…because someday they are going to have a cure for this little fucker. And when they do, David will be here and he’ll get the treatments he needs and we will come out of the other side of this mess…

Continue to dream…

~The Warriors

Here we go again…

2007-06-21T13:42:00.000-05:00

Well, we had David’s MRI. It could have gone better, but it could have gone a hell of a lot worse. The tests came back inconclusive once again. So, no matter how they come at this damn spot….they just can’t figure out what the hell it is. It could be after effects of the radiation that lasts up to a year and tends to inflame the wound and surrounding scar tissue, it could very well be cell necrosis…which is old dead cancer cells and good cells that were destroyed from the radiation…or it could be the beginning of cell activity. Which is very bad. That would mean that there is cell growth and the beginning of tumor activity. But they can’t determine exactly what it is.

The doctors gave us a choice. We could wait it out and see how it progresses or doesn’t progress in the next couple months or we could go in and figure out exactly what it was. The doctors, who are extremely pro-active, felt it was best to go in and check it out. If it’s nothing…that we can move on and Dave will heal from the surgery…but if it something more it is much better to catch it now, when it is a few cells before it blows up into a tumor. It would be much harder to manage than a few undefined cells.

We have a new surgeon…who kicks butt. He’s not only got a great bed-side manner and sense of humor. But he’s good. Very good. Everyone says he’s the man we want. He specializes in Malignant brain tumors and epilepsy and tends to do 2-3 surgeries a week in the temporal lobe…which is where he will be going in on David.

The surgeon said that if David was 60 or 70, we wouldn’t be having this conversation. But he’s young and healthy…and one hell of a fighter, so they believe it is definitely worth it. This doctor tends to map the patients brain before he goes in to determine inactive areas and dormant areas before the surgery begins, which was not done in our previous surgery. And this time they will actually be removing a portion of Dave’s temporal lobe including the suspect tissue as well as a little extra to be sure. Sounds lovely, doesn’t it? Not really…but if it keeps him healthy, that’s all that matters. The doctor says recovery will be longer on this one that his previous surgery, but the surgeon doesn’t know David and what he’s capable of. I’m guessing he’ll bounce back faster than expected and wow them all…as usual.

David’s surgery is scheduled for Monday the 25th, exactly one-year from the first one. How crazy is that? He’ll be going in at 7:30 and be under for 3-4 hours. So…here’s where we’re at. I can’t believe we’re about to go through this all over again, but at least this time it’s on our own terms. Wish us luck and everyone’s prayers, wishes and thoughts are appreciated.

A little reminder that there is always hope...

2007-06-15T07:41:00.000-05:00

An Israeli researcher has developed and successfully tested a new device to combat glioblastoma mulitforme (GBM), the most common and aggressive type of brain cancer.

Professor Emeritus Yoram Palti Haifa's Technion Institute told the website Israel21c that in tests on 10 cancer patients over the past year, his device has more than doubled the median overall survival rate of GBM patients.

The overwhelming success of tests has prompted 12 cancer centers in the US and anther eight in Europe to initiate large-scale studies of the method.

Palti's device consists of small nodes that are attached to the scalp and use electrical fields to kill the cancer cells by interfering with the division of the cells, thereby arresting the growth of the tumor.

The nodes are powered by a small battery pack, allowing patients to undergo constant treatment while going about their daily lives. Unlike chemotherapy, there are no side-effects.

The crappy MRI that started it all...

2007-06-03T20:23:00.000-05:00

Ok. Where to begin. Dave had an MRI about a week and a half ago.

Why they don’t do an individual’s scan on the same machine every month is still a mystery to me. Especially in David’s case where it needs to be detailed and compared to previous scans. And since each MRI machine is a bit different you would think they would want consistency. But hopefully this will be the last time that Dave is on a crappy MRI. He’s requesting to have the same MRI machine for every scan done here on out.

During this months MRI, he made a comment that the machine was extremely quite and for those of you who have had MRI’s, this is unusual. They are usually quite loud. So, he had the MRI in the morning and then met with his neural-oncologist in the afternoon. It was an extremely grainy film. Much different then his previous scans. Since it was so grainy, it was very difficult to compare this film to David’s previous ones over the last year. But our doctor thought he saw an extremely slight change. Surprised the hell out of David. The doctor couldn’t be sure there was a change at all seeing as the film was so bad…but he wanted to be sure. So he said he would call us and let us know what the rest of the team thought of it. This was the 23rd. No news that night and then finally the next day he called to say that he showed it to the entire team of Neurologists but none of them could agree. Half felt there was a minute change while the other half didn’t see anything at all. So, they decided to do a PET scan. These are much more detailed and show not only physical changes but changes on a cellular level. So it would show any Cancer cells that might be present.

At this point, we’re trying not to panic or let fear over take us. It could be nothing, it could be scar tissue that tends to get inflamed from all the chemo drugs, or it could be the beginning of tumor activity. So we wait. And wait and wait. Which is why we didn’t post immediately. I kept expecting immediate results and wanted to post the final results. Not just a panicky post about what it might be. But it took until the following Wednesday the 30th to get us in for a PET scan. Which sucked big. The waiting was excruciating and yet I had to keep reminding myself that other people had to get scans too and that those people and their loved ones we’re waiting for their particular time slot to have their test done for whatever nasty ailment they were looking for and I’m sure their issues were just as serious as ours. So we waited all weekend. And then the scan day came and they injected Dave with some sort of radioactive solution, which I would rather not think about what it was. Not like he doesn’t have enough toxic chemicals coursing through his body at the moment. But they did the scan and then we had to wait some more because the results have to be processed. Our doctor kept up on everything and would call us at night whenever he talked to anyone or even if he didn’t…just to let us know he hadn’t forgotten about us. But the results came back and Dave and I huddled upstairs over the speaker phone as he told us that it still is inconclusive. Not what I wanted to hear…but at least it wasn’t that they found a tumor. This whole experience at times has been so heart wrenching and exhausting…and we knew that there would be bad days. We knew there would be scares. Anyone who has had cancer has talked about a faulty test or possible sign of a reoccurrence. It’s what we all fear most. But, as I been reminding myself everyday since that crappy MRI., we can’t live in fear. This is our life. The good and the bad. We have to enjoy every precious moment and live it to the fullest and not let this overwhelming fear pull us down and smother us. But it’s so hard sometimes. I’ve spent the last couple days either crying or laughing. I guess it’s a testament to our strength and love that we can still laugh. But we would have it no other way.

So. The test is inconclusive. We know it isn’t scar tissue because in the PET scan there is a tiny flare up next to the original scar tissue from David’s first surgery. And we now know it is one of two things. Either Necrosis… which is dead cancer cells from the radiation David went through or it’s the beginning of tumor activity. We spoke with our doctor at length and either way he is extremely optimistic. If it is indeed cancer cells…that it is so minimal that they can be dealt with fast and efficiently.

So, right now we’re going to wait a bit more. They are all leaning towards surgery just to find out what that bugger is. The location this all happens in is an “ideal” spot, if you really could call any of this ideal. It’s easy to get at and in a dormant area of the brain. Froedtert has a temporal lobe surgeon who basically does 1 to 3 surgeries in the location every week and that is who our doctor would want us to use. He’s on vacation until the 11th…which isn’t a big deal since we’re not sure what we’re dealing with yet and it’s so minimal that there is no urgency yet. David’s monthly MRI is scheduled for the 20th. So, depending on what the brain surgeon says…we will probably be waiting until the 20th for David’s MRI and see how it looks. If there is no sign of anything (Because this stuff that showed up on the PET may have been there all along and only showed up because we did a more detailed scan) then they may or may not do a surgery. And obviously…if there is something in the MRI, then Dave will be going in for the surgery. So. We wait.

A dear friend of ours reminded us that if he ends up going in again for another surgery, he is so much healthier then he was the first time and that his recovery the first time was miraculous. And I keep reminding myself that David isn’t just anyone. He’s like nothing they’ve ever seen before. And if he can do a cycle of radiation, a year of chemo and still look like he’s the healthiest man on earth AND be in a softball team. He can do this too. I just have to believe. We all do. So we’re going to need everyone’s prayers, manifestations, whatever you do….we’re going to need it to get through this. I myself believe it’s Necrosis. His blood counts are fine and show no dips and he has no symptoms. So I think he’s fine. But that doesn’t mean that my heart isn’t aching.

It's a collector’s item, really...

2007-05-18T18:38:00.001-05:00

For those of you looking for the rare and oft coveted bottom portion of the “Space 1999” sci-fi show plastic play figure…your dreams have just come true. For my dear husband has it and is holding onto it because…and I kid you not, ”It’s a collector’s item…really.”

You gotta love him. I once thought I was the queen of collecting. I tended to packrat stuff away…never knowing when this wacky fabric might come in handy with an art project or those neat buttons I found at a little antique store in Tucson might become part of some sort of amazing multi-media piece not yet realized. But my dear husband outshines my packratedness by a long shot. He is more nostalgic than me…and that’s saying a lot. He keeps everything that has even the remotest fond memory. I can’t fault him for this, it’s one of the reasons I fell in love with him. His romantic nature and love of preserving nostalgic memories. I too tend to covet items that hold a special place in my heart and we have an entire cedar chest filled with our long distance courtship and many years of marriage. But I guess I do have boundaries. And saving HALF of a plastic figure from the 70’s is one of them. Call me crazy…but I highly doubt that those little plastic pants will be putting Alec through college or sending us to Europe. But who knows…we can always dream right?

So, we shall continue to weed all of the stuff out of the basement in preparation for the basement overhaul. Wish us luck and if anyone’s interested in a half a Space 1999 plastic man figure…I can hook you up!

And the journey continues…

2007-04-27T14:13:00.000-05:00

This whole little journey we’ve embarked on has taught me and is still teaching me so much about life and myself. I’m learning to live and enjoy life now. And I’m also learning that I’m stronger than I ever thought possible and that every day I get to spend with my husband and child are precious and wonderful.

It’s been a tough couple days here…filled with many ups and downs. David is doing splendidly…so no worries people. But it’s been a long couple weeks. Firstly, we had news that a friend of some dear friends of ours lost their 2-year old son. The whole story broke my heart and made me realize how tenuous and precious life is for everyone. I went home and smothering Alec with hugs and kisses and when he later had a meltdown about something I can’t quite remember anymore, I just smiled. Because he’s two and he has his up-days and his down-days. But he’s here…making our life exciting and I’m honored to have him in our life and watching him grow into the person he’s becoming. And that night he just snuggled up on my chest and as I held him close I shed a quiet tear. A tear for that little boy who never got to have his first kiss or had his first day of school. And I also shed a tear out of joy. Joy that I have this amazing little person in my life and how lucky and blessed I am. It still makes me sad to think about it now. I feel sad for that poor couple and the loss of their own precious little boy.

The next big emotional hurtle for the week was our glorious basement! Ah the joys of homeownership. We have begun the slow progression of tossing all the crazy crap that we’ve accumulated over the years. Note: We’re not only artists…but we’re both nostalgic about pretty much everything! Which means we’ve accumulated an amazing amount of stuff in the last 15 years. As we started slowly going through everything, and as the stacks of boxes started getting smaller, we began noticing a bit of a moisture issue against the walls of our basement. Nothing too serious we thought. It’s not like our basement was damp or anything. But we figured we should have someone come out and take a look at it since we were hoping to begin framing out and finishing our basement over the next couple years. Little did we know we had one hell of a shocker coming our way! We had a company come out and check it out and boy oh boy do we have issues. Big issues.

Our home is about 100 years old. So we knew there would be a few issues with having an older home. And we knew the basement had some issues before we purchased it…because they put in a drain tile. But before we ever even purchased the home…we had a specialty company come out and check the basement out and he gave it a thumbs up! Boy was he wrong. I’m unsure if he was just an idiot, or the issue was concealed very well, or that he just didn’t give a rip and was helping our real estate agent sell a home. But long story short…we have issues. We have horizontal cracks on all four walls, which is bad. VERY bad my friends. If we hadn’t caught this…our walls would have started sagging inward and we would have been in a whole other world of hurt. But even as it is. It’s not good. Our home is a wonderful old bungalow that had the misfortune of being built in the 20’s when most people didn’t bother with tarring or putting gravel around the basement walls. And since we live in a region that is considered the Valhalla of basement issues due to the mud like consistency of the dirt around here. We’re screwed. Our cinderblock bricks over time have developed little fissures which have opened up and the nice little open spaces inside each brick which was meant to help naturally insulate our basement…have filled with water. And continued to fill with water…so now if you take a water measurement of our bricks in the basement they are pretty much full of water all the way to ground level. Hence why our basement has been so insanely cold. Also, our groovy drain tile is basically useless because it was installed incorrectly and will have to be dug out and replaced. I’m not too sad to see that go. Since it was installed incorrectly, we have a steep incline around our entire basement about 18” wide, which made putting anything up against the wall damn near impossible. So, we will be having a company come out and dig up our crappy drain tile and put in nice new drain tile which will be flush with the floor! Yippee. We also will be getting a new sub-pump and this snazzy new de-humidifier thing that connects to the wall of the house but is more effective and uses minimal electricity. Which is a good thing as well. We will also have a crew, of what the ladies at work are hoping to be a group of hunky manly construction workers, don’t hold your breath ladies. And these fine gentlemen will dig a 12-24” trench around our entire home and ALL the way down the walls. Which will then be tarred and the space will be filled up with gravel. And then we should be good to go! I guess I should have stopped bitching about how messed up our finances were, eh? I think the universe decided to gently point out to me that it can always be worse and to just appreciate where you’re at. I’m not quite as panicked as I thought I would be. This has to be done. We caught it before we were completely screwed and somehow it will all work out. We will get through this like everything else and somehow the finances will all be ok. But damn…this sucks. On the upside…we’ve now become inspired to get the basement cleared out in a jiffy. We opted to become part of this company’s on-call list. This means that if they finish a job early, and are in our region, they will call us and be at our place the next day. Since the company pays the workers for a specific time period, the guys get paid for the entire time, even if a job is done early. And being on the on-call list, they can send the crew over to our place and the company gets another job in and doesn’t have to pay the workers to sit around. This is going to cut a couple grand off the total, but we will only have 12-48 hours notice before they arrive. And we they do, they’ll need a 3-5’ space around the entire basement perimeter. Holy crap!

So, it’s been one hell of a week. But we got through it and everything will work out. Hopefully next week will be a tad less uneventful. Take care and enjoy the weekend. I know what we’ll be doing! Basement here we come…

Go Figure

2007-03-29T21:15:00.000-05:00

So here I am…chugging along. Getting a bit twitchy because we’re coming up on the day for Dave to be scanned. It’s been two month since his last scan…and I know in my heart he’s ok. And yet this damn fear just begins to slowly seep in. I try to ignore it…knowing that the fear is completely unproductive and actually hinders me. I think I have gotten mastery over it and then I watch this show. Doctor Who of all things. And it brings me to my knees. Go figure.

It wasn’t even a particularly amazing episode. I’m not a big supporter of the Doctor falling in love with his assistant and the mushy emotional stuff. Don’t get me wrong. I’m a romantic…but it just doesn’t jive with me for Doctor Who. Call me a purist. Give me great story lines and wonderful alien planets and worthy causes…but don’t give me a sad love affair of unrequited love in one of my favorite sci-fi shows. But I’m digressing. This one little episode, although nothing spectacular, brought me to my knees because the driving thought behind it went to my core. Alone. What an awful thought. The actress actually did what I consider a pretty damn good job of that utter sense of bereavement and loss. And it shook me. And all my walls came down. And I cried. Because it made me think of the utter devastation of loosing the love of your life. And how the mere thought of it sometimes makes me just want to stop. Stop feeling. Stop the aching in my chest. Stop everything in hopes that the fleeting thought passes. And as I watched this character…I didn’t see her. I saw me. And all my fears about loosing David came to the surface. And I lost it. But I guess we all have to do that sometimes. And I guess it’s better to acknowledge the fears and let them come to the surface where they can breath and be released…instead of hiding them away deep down inside and letting them fester. Well, at least this is what I’m telling myself right now.

But on a more upbeat note…Dave had his MRI this morning…and as expected his MRI was clean. He’s doing amazingly well and even his doctor seems to have become a believer and said he expected nothing less. There was absolutely no change… and the doctor even compared it to his January scan. Dave never doubted it for a moment. Actually Dave knew he would be fine. Once again proving this whole mind over matter thing. The mind is an amazing thing…and Dave it teaching me that if you truly believe in something…you have the power to make it happen.

Later this afternoon I had the rare opportunity of joining David at the hospital to pick up his latest cycle of Chemo, which is usually ready 4-5 hours after his MRI. What an interesting trip that was. We drove up and got our “preferential” Cancer parking space up front, which Dave says is one of the perks of this whole Cancer thing. And then he began humming a tune. Which if you’re unfamiliar with Froedtert…each floor of the parking garage has a flower assigned to it and they play a song that corresponds to that flower and only that one song. Cute. We walk into the elevator area of the parking garage and they’re playing that same damn tune …and of course Dave knows it because he always parks on the “rose” level and there are red roses everywhere. Kind of wacky. And as he humming, he turns to me and says, “I don’t take the elevators here. I take the stairs…and sometimes I take them at a run.” I just had to laugh. I don’t know why I worry so much sometimes. He’s fine. Hell. I had a tough time keeping up with him as he trucked up the stairway at mach speed. And I just kept thinking to myself…and he’s the one on CHEMO! Nuts.

So, once we enter the walkway into Froedtert there is an older woman manning a desk, presumably for information and assistance. And as we whisk past her Dave waves and says, “Hi Betty.” I guess he’s beginning to know everyone on a first name basis. And when we walked up to the prescription counter…he was greeted by his first name by the pharmacist. She seemed delighted to see him and was as amazed as everyone else at how well David is doing on Chemo. She didn’t say it directly…but you could tell by her voice and when she asked, “How many cycles is it now Dave?” And then seemed a bit surprised and yet happy when he said 7. And as I watched everyone around us interact with David…I knew how amazing he is and how utterly amazing he is doing. And I know he will continue to do well. Because of who he is and his incredible optimism and willpower to survive.

So…In a period of 24 hours…I went from feeling so sad it felt like my heart would fall apart to standing in the sunshine and feeling optimistic for our future. What a crazy ride it’s been. Hopefully the rest of the week won’t be filled with quite so many hi’s and low’s. But I guess we’ll just have to see where the roads take us…

Oh...and on a side note...can you believe it's only been 5 days since my last post? Don't get too used to it!

Milestones

2007-03-24T20:52:00.000-05:00

This has been quite an exciting month for us.
David and I went on our first vacation alone, just the two of us, since our honeymoon. Sad as this may be, it’s true. Now don’t get me wrong. We’ve had some lovely vacations over the years; we just always ended up spending it with family or friends. So, we got away just the two of us this time. Left the little one with the grandparents and hopped a plane to Las Vegas. It was a blast. David was able to get a great rate through his work and we nabbed it! Even though neither Dave nor I are gamblers (We gambled a whole whopping $1 while we were there) and we’re not big drinkers (And now that Dave is on his drugs he doesn’t drink at all) we still had a grand time. We ate a lot, walked a lot, played a lot and all and all had a lovely time away from all the day-to-day stuff here.

At first we weren’t sure about going. We worried about being apart from Alec for 4 days and we knew that albeit it was a great deal…it still really wasn’t in our budget. But then we realized when would be an ideal time? And life is passing us by while we’re waiting for that perfect time to get away, so we said the hell with it and went. I’m glad we did. It was worth every penny. We spent long hours just people watching and even longer hours just chatting in cushy little chairs in tucked away nooks and crannies in the Bellagio sipping overpriced but exceedingly good coffee and amazing French pastries from this awesome patisserie. And all the worrying over Alec missing us…well…we needn’t have worried at all. The little guy had so much fun with grandma and grandpa that I don’t think he lost much sleep over the fact we were gone for a couple days. He got to stay up until 10:30 pm (His normal bedtime is 7:30) and eat all sorts of yummy, crazy foods mom and dad never let him have and best of all he got to snuggle up next to grandma every night in her big bed! What fun.

Another big event this month was that Alec began preschool. Yes, I know he’s young and yes…it is mid-school year. We didn’t plan it this way. We had been looking for preschool for the fall and were coming up empty. Many had different philosophies that weren’t us, others were amazing but the costs were insane (I believe early education is very important…but I also believe putting food on the table is just as important) So, after a lot of searching and even more phone interviews and walk-throughs we found one. It was perfect and we went on the waiting list for a slot in fall. And then the director said she had some spaces available now and that if we wanted to start now we could, as well as be guaranteed a spot in fall. We still weren’t sure about it…and then TV reared its ugly head. We found the munchkin was getting a bit more TV time than we liked while mom was at work 3 days a week and he was asking for it all of the time. I know he may be young but I think he’s ready and him getting out and playing for 5 hours a day, once a week can’t hurt him. He has 4 other children in his class and they do both outdoor and indoor play, music, art, both snack and lunchtime and also kindergarten readiness including letters, numbers and all that other good stuff. He started two weeks ago and he’s been amazing. He didn’t cry at all the first time and the second week he had only a few tears. He plays great with the others, shares well and loves the art projects. Could I be any more of the proud parent? So, I think this was a good choice, although we went into this wondering if we were smoking crack! He is completely fine, no weird abandonment issues as of yet, and he seems to really like it there. He actually ran into the room the last time I dropped him off. And seeing as it is only once a week, he’s still getting his much needed love and play time at grandma and grandpas twice a week. Although as much as he seems to like preschool, he’s still very ready when I go to pick him up. As soon as he sees me he runs up and gives me a big hug, then grabs his bag and jacket and heads for the door. Like, it’s been grand but let’s blow this popsickle stand! I’m glad he’s doing so well there but it still nice to know we’re needed!

So. Here’s where we’re at. Sorry it’s been so long. It’s been a nutty month. But hell…you guys expect nothing less right? I had a friend tell me the other night that she doesn’t view it as I blog too little. She said she would worry if I was blogging too much…that would mean I don’t have a life. So, she said it was good that we’re out there enjoying life, each other, our family and all the other wonderful and amazing things that surround us.

So, next time you check the blog and I haven’t updated for yet ANOTHER week…smile and know that I am out there somewhere having a lovely time with my family. After that you can then send me the email saying wassup you lazy little git! Just kidding.

Take care and Continue to Dream.

People are funny…well…sort of…

2007-03-01T10:16:00.000-06:00

Ok. I just have a little something to say. I love all of the support we have had, so please don’t get me wrong. Actually…it’s one of the things that have helped us get through each day and begin to move forward and past the craziness. But I believe that there is a big difference between support and being completely insensitive.

I know that sometimes people say the wrong thing and sometimes you just don’t know what to say at all. I completely understand that. Hell…I’ve been there. And I’ve said stupid things when trying to be supportive and muddled through an awkward situation. And now…I’m even more aware of what I say and how I say it. When something happens now to friends or someone around me I feel like I should have some precious pearl of wisdom to share with them. So many friends have shared such special and private moments and emotions with me and they have said such beautiful wise things. And yet…even now, when I am faced with the same situation with someone else, I am sometimes at a loss for words myself.

But I can say this. I do know that saying, “Wow…I’m so proud of you guys. You’re doing so well and living life to the fullest…especially since Dave could die any day now.” WHAT the hell? I’m sorry but I don’t see how that is supportive. How is that supposed to make me feel better? Not only does it make my heart constrict and bring all my fears back up to the surface…but that’s a hell of a thing to say to someone going through this. Saying something like, wow…you guys are doing so great with the adversity you’re facing is fine. But inferring that we have to live life to the fullest because we all know Dave’s days are numbered is like stabbing me in the heart.

Another favorite as of late is when someone comes up to me and asks in a whisper. “How is Dave doing with the cancer?” These people tend to say the sentence out loud…only whispering the word “cancer.” Now, I’m unsure why they’re whispering. Is this a taboo subject? And if so, don’t even bother asking it. If you’re going to ask it. Just ask it. Don’t whisper. What does she think…that by whispering the cancer won’t over hear her?

I know that this sounds like a bitchy post. But sometimes I’m flabbergasted by the things people have said to me all in the name of support. But I also don’t want this ranting to stop anyone from asking about David and I or about his treatments. I honestly don’t mind talking about it. (Note: Although asking during the middle of a party is not always ideal. It brings not only me down…but others around us having the conversation.) I don’t mind discussing it and please don’t worry about reminding me what we’re facing. Believe me. I know and haven’t forgotten. It’s something I carry with me every day.

So. Please keep the support coming. Both of us need it. And if you have questions ask. If you just want to say, “Wow, this really sucks and how are you guys doing?” That’s fine too. I know that the people reading this are not the ones that I’m ranting about. I just wanted to vent to someone. Because it annoys me and honestly brings up my own very real fears. As always…thanks for listening.

Quick Update…

2007-02-14T14:57:00.000-06:00

It’s been awhile so I wanted to put a quick update on the blog.
We’re all doing well here. Dave’s January MRI was clean and his oncologist said that if you were to put all of his MRI’s together since last fall…they all look exactly the same. Which is great news and the doctor feels that we can now have the MRI’s done every other month instead of monthly because there hasn’t been the slightest change. Dave will still have to go to the hospital to check in with the doc and get his prescription for the chemo, but at least he won’t have to be scanned every time now.

As for our art…no new pieces have come out of our kiln yet. It’s been so damn cold and our basement is not what you would call well insulated. It’s cold down there. VERY cold. We joked about putting on our jackets to go down there to work on some new pieces…but in the end it still wouldn’t be a good idea to fire up the kiln because to keep it firing at the temperatures we need would take a lot more energy and gas and it will just be easier when it warms up a bit. But we’ll keep you posted. We’ve been sketching new designs and tossing about a couple neat ideas for the new pieces. I can’t wait!

We also have realized that it would probably be a good idea to replace our basement windows this summer if we can finagle it out of our budget. Is this realistic…unsure but it’s something to work towards. They are the originals from the 20’s and time has not been kind to them. I think sometimes it’s not much warmer in the basement than it is outside during winter. And if we plan to start renovating down there and setting up our studio, something will need to be done about the cold. Windows will be the first step and then insulating the walls. Oh, and we will continue to toss the mass amounts of junk that seems to have accumulated down there…Be afraid. Be very afraid.

Words To Live By

2007-02-06T14:00:00.000-06:00

"Courage, it would seem, is nothing less than the power to overcome danger, misfortune, fear, injustice, while continuing to affirm inwardly that life with all its sorrows is good; that everything is meaningful even if in a sense beyond our understanding; and that there is always tomorrow."
~ Dorothy Thompson

The Headache

2007-01-22T14:30:00.000-06:00

Let me start this by saying David is fine. But Friday was a tough day for us. David had his first headache since the tumor.

David and I knew the day would come. Headaches are inevitable. Everyone gets them and they’re perfectly normal. Unfortunately for us…they come with a lot more baggage. To us a headache means the possibility of a tumor. David had a nasty headache for 3 weeks before he was diagnosed with the tumor. We knew this day would come and we dreaded it.

But it came and we got through it. David had a headache. Took an Advil and it went away. This was good news since the last headache never went away no matter what he took.

Also, thankfully David already had an appointment set up on Friday afternoon with his Radiologist and he reassured David that he was clean. He just had his MRI at the end of December and there was nothing there. Also…the headache would still have been there. A single Advil would have done nothing for it. So he’s fine. But it hit us both pretty hard and we had some very dark moments. It was a nasty reminder of how precarious life is and the fears that surround our daily life.

It’s a beginning…

2007-01-12T18:10:00.000-06:00

So, here we are after the holidays. We had a great holiday season filled with friends, family and cherished moments. Can’t ask for much more can we? We tried to let ourselves not get too caught up in the hustle and bustle of the season and just sit back and enjoy the ride. I admit we weren’t always successful…but we didn’t do too bad either and I have a feeling next year we will do even better about just letting the small stuff slide and enjoying the holidays.

We trimmed back a bit on a few things. It was hard because I usually write a note in each card I send out, but with everything going on in our lives as of late I found that I just don’t have the time like I used to. So, I kept the “tradition” of selecting a quote I feel particularly appropriate for the year…but it was pre-printed in the cards. I felt it was kind of impersonal but I knew there was no way in hell I would have time to write them all out and I didn’t want to sacrifice the quote. So. No personal notes but the thought and love behind it was still there and although I was unable to jot out a quick personal note in each card you were all in my thoughts.

I was going to do a Holiday letter as well to just encapsulate the year since I wasn’t filling out each card…but when I sat down to write it, I hadn’t a clue where to begin. What the hell do I write? Hi everyone…hope everyone is doing well. The Fisher-Hewett’s have had one hell of a year. Dave had a headache. Then he had a tumor. A guy went in and popped that bad boy out and now it’s gone and he’s doing the “Chemo Thang.” OH, and Happy Holidays! Nope, it just doesn’t work does it? Would have been a downer and I couldn’t seem to put a “peppy” spin on it so I decided screw it. I’ll do one next year once things settle down. Will they settle down? I believe so. Am I on crack? Possibly. But it makes life more interesting that way and it makes waking up in the morning a hell of a lot easier.

And DRUM ROLL please....after much anticipation…
We finally have completed pieces from our not so new kiln. Here they are!

We kept it simple so we could focus on the intricacies of firing the kiln, proper annealing schedules of the glass and other fun technical things. But we’re happy with the final outcome and will hopefully have some new more developed pieces soon. We’re both so excited about the medium and all the ideas we have rattling around in our brains it’s hard to slow down and take the much needed time to learn the medium fully. But we’re trying to be patient and explore this new exciting craft at a moderate pace.

Beyond that...We have spent an enormous amount of time in recent months researching the whole tumor thing and changing our eating habits and lifestyle. And now that some of it has become second nature and other elements are becoming a little bit more routine…like the constant preparation of food, fruits, veggies…the cooking and the subsequent dishes and the scouring of cookbooks looking for healthy recipes with “cancer” fighting foods. It’s become a bit easier and I’m hoping in the coming months to develop an arsenal of yummy meals to keep us healthy and chugging along.

And now that things have started to settle down a bit, we’ve also starting hitting the house again. I find it keeps me busy and keeps my mind off all of the other crap going on…as well as we truly enjoy the house projects. And one thing we’ve learned through all this is that Life is too short to spend too much time on stuff you don’t want to do. Do the not-so-fun life stuff as quickly as possible and move onto the things that matter most and that you enjoy the most. We both absolutely love our home and working on it brings us both so much joy and satisfaction. So. We’ve picked up where we left off on the many unfinished house projects and I’m sure a few new ones will be added in as well. You know that is inevitable with us. :)

And between the house projects, art projects, cooking, and spending time with the family I will try to take brief moments out to blog and let everyone know how we’re doing. I have the best of intentions to blog every 2 weeks or so…but as one friend pointed out…it’s not very likely!

Take care friends and I’ll leave you with this little quote I found.

"Life is what we make it, always has been, always will be."
~Grandma Moses

The Power of Attitude...

2006-12-13T16:15:00.000-06:00

Hello everyone...I have a NEW excuse this time for my intermittent blogging. Holidays. How does that sound?

We are all doing well here. Dave has had his 3rd clean MRI and we've come to expect nothing less. I didn't even become a nervous wreck this time. David is doing amazingly well. Hell...the woman at the reception desk thought he was an employee of the hospital and not a patient and gave him a quarterly employee newsletter. How funny is that? When he told her he was a patient there she was completely surprised. She couldn't believe he was going through treatments...as we all can't. I think many people forget he is. Because he is the same David he always was. Always going. Always moving. Always optimistic. One of the many reasons I fell in love with him.

So. We are trying to keep some sense of normalcy here. The house is decorated and brimming with holiday joy. Chocolates are being made. And chaos is ensuing. So basically the usual for our household and we're having a blast.

A friend of mine sent me this inspirational card when I was having a really crappy day and it just rang true to me. I don't think she even realized that I love quotes and keep journals of quotes I find everywhere that inspire, touch or affect me in some way. But she sent this card and it just "fit" where I try to be. Where Dave is.

Here it is:
"Our lives are not determined by what happens to us, but how we react to what happens; not by what life brings to us, but by the attitude we bring to life. A positive attitude causes a chain reaction of positive thoughts, events and outcomes. It is a catalyst...a spark that creates extraordinary results."

So to everyone out there. Thanks for your support, love and positive thinking. That's whats going to get us through this and that's why Dave is going to be here many many years from now.

Trick or Treating...

2006-11-08T22:40:00.000-06:00

Ah, the angst...

2006-11-08T08:58:00.000-06:00

Ok. I know it's been awhile. And yes...I always say I'll update this more but who are we kidding? Life is crazy. Crazier sometimes more than others.

Where to begin. I guess we'll start by saying David had his second MRI. It came out clean...just as we expected. He's doing so well. The doctor was so pleased he's doing so well that he decided to up his Chemo meds by a ton. Lovely. So now instead of 220mg a day...he's taking 310mg. Suffice to say that's a hell of a lot more than he was taking. He's still doing considerably well considering he's gone through Radiation, 45 days of Chemo and now is on his 2nd cycle of Chemo for the 12 month sequence. But the higher dosage is taking its toll. He was very tired and nauseous. It was hard to see and brought home what he's going through and what we're facing. It's been a couple of dark days lately. I hate that this has happened. I hate seeing what it's doing to his body. I hate that I'm terrified at the prospect of a life without him. I hate it all. We're too damn young to be going through this and damn it this sucks. Obviously I'm working through a little anger on all this. It's the fear talking.

I'm trying to be strong and optimistic and stoic. But damn it...it's so hard sometimes. I have a great marriage to an incredible man and I want to grow old with him. Enjoying our life together as we have always done. I don't want to be alone without him and I'm sure as hell not ready to do this parenting thing alone. So here I am. Falling apart at the seams it feels sometimes. Friends have said I'm doing incredibly well considering what has happened in the last 4 months. But I feel like I'm a mess. So. There it is. It just is sometimes very cathartic to just put all my emotions and crap out there. It releases them so I’m not carrying them around all day. So indulge me…

And don't get me wrong. I have good days and even great days… We've been playing a lot and enjoying life. Which is how it should be. I don't spend my days falling apart. It just hits me sometimes and feels like someone has taken all of the air from my lungs and then I feel sad. I cry and then I pull myself together and move on. I try to remember that life is too damn short no matter if you live to 100 to be moping about all day. David is here and doing well and we're continuing to enjoy our life together.

So amidst all this angst we're still having good days. At night and on the weekends, when we have time to spend together, I feel more at peace and happy. We both do. We're spending a lot of quiet time together while David is recouping from the last Chemo treatment. He's already feeling better this morning and we hope to fire up the kiln this weekend or next week and do our first "official" firing. So far we did the initial one to clean the kiln and seal the coils. So now it's ready to go. So let the adventure begin and the art making to commence!