Sunday, June 22, 2008

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.


Post a Comment

<< Home