Wednesday, December 31, 2008


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 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 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.

Monday, December 29, 2008

At a loss for words...

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...

Friday, December 26, 2008

Holiday Wishes...

Tuesday, December 23, 2008

Just one of those days...

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…

Saturday, December 13, 2008

Catalyst for Change…

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 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.

Thursday, December 04, 2008

The Lump…

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 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…