Choosing to live…

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...

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?

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

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