Having been told "it would be naive to think the radiation will cure you" I'm still holding on to a hope here that the radiation knocks the lymphoma down for a good long while, maybe long enough for something else to come along and consider promising to cure me? Maybe it bats it back to remission for another decade, long enough to almost think it's gone for good. Maybe miraculously it is just gone, and stumps all the docs as to why. Who knows? I can't say that I won't worry over it, but I will insist on being at least equal in optimism on what could be possible. Thing is, I also have to deal with the reality of what is probable.
After this radiation my options are down to clinical trials and the stem cell transplant. What was recommended to me was a haplo stem cell mini-transplant. The hope is in using one of my parents as a half-match donor and receive their stem cells, along with higher dose chemotherapy. Just like the bmt I had back in 1993, the chemo hopefully kills all the cancer and yet doesn't kill me, then the stem cells come in, engraft, regrow, and I get a new immune system which knows how to fight lymphoma. This was first presented to me over a year ago. I've done a lot of thinking about it. I've had some contact with people who have gone through it or something similar. I have to tell you honestly, I still don't like it. To this point, I haven't yet been able to imagine myself voluntarily signing the consent forms and heading down this path. Doesn't mean my opinion won't change..but as of today, it's a hump I can't get over. I found a pretty good explanation of the basics on haplo.org - as most searches bring back very technical info, this at least gives the concept in more simple terms. Take the percentages with a grain of salt, however, because I think it hasn't been updated in a few years and I don't personally trust all the numbers.
One of the most ghastly parts of transplant, to me, is that you ought to try it at the moment you are at your strongest point. You have to take a gamble at saying - I could feel well for a long while yet but eventually it will go bad. This thing has a chance to cure me and also a chance to kill me or to bring along serious side effects that will make my quality of life lower than it is today. Or not. Maybe I'll get all the way better and feel great. There's no way to know what will happen. You can wait - but if your illness gets worse, the chances of the transplant being successful go down, and it's even possible that you might not be a candidate anymore.
I've been thinking about "Deal or No Deal". You have a decent, but not outstanding, offer from the banker. You can take that, or you can try another case. You could end up a millionaire, or you could end up losing that great offer and find out you've got $5 in your case. I'm not a big risk taker! When I am watching that show, often enough I grimace and say "she ought to take the deal now!" Once in awhile, the contestant will take the deal that I think I'd take. Many of them keep playing. A lot of times where I said to take the deal was the highest offer. But of course, a few come out to be millionaires or make out much better.
When it's your life on the line, it becomes a lot bigger than an academic entertaining question. If you can feel pretty sure that you'll feel good for still some time, but know that at some point it will go bad... do you want that time? Of course you do. Are you willing to risk that time, maybe give it up all together, for a chance.. a risky and highly unsure chance.. that you'll get more (quality) time after? I just don't know.
When I went to see specialists for a second opinion, one of the things that was said to me was "In your situation, it is reasonable for you to choose any of these options." Even including do nothing at all. I appreciated that statement, because I think we are given a lot of messages in life that we ought to be brave, and have the guts to take big chances for the payoffs, go down fighting, never say die, and all of that. Everyone in my life has been nothing but supportive to me (thank you!). Nobody has put any pressure on me about what decisions I ought to make. I'm grateful. But I feel some pressure anyway. Maybe it's just hardwired instinct for survival - you feel like you have to/ought to /should do whatever it takes for a chance to go on. Your rational mind comes in and says - but wait - listen - pay attention to what could happen here. Internal conflict!
No matter what the results of the scans I had yesterday, these things don't change. The best case scenario, to see no evidence of active disease, the question still looms if I should take this "strongest point" and consider going for that cure. With every scan, the results are important. You try not to think about it too much, but you can't help holding your breath a little, wanting to hear and at the same time dreading to hear what they will say. Your future is hanging in the balance.
I think I mentioned Leroy Sievers' 'My Cancer' blog here before - if not, let me mention it now. Leroy's post today is about hope, and wanting to get better, even in the face of reduced possibilities:
I want to get better.
I don't think about that a lot. I don't let myself. I spend more time thinking about living with cancer, having the best life I can under the circumstances. And don't get me wrong, I'm a realist. I'm honest with myself. I know what's happening to me, and what's likely to happen in the future.
But I still want to get better.
"Having the best life I can under the circumstances." This is where I am, too. Deciding what that is, what that means, how to get there. How to be at peace with whatever decision is made. I don't want to be on my deathbed saying "I wish I had gone for the transplant." I also don't want to be suffering effects of transplantation and saying "At this moment I would still be doing fine if I hadn't done this." Whatever decision is made, I need to be confident that I've done the best I could, that it was the right decision for me.
Why make a post about all of this? Maybe just to let you know that I am thinking about these things, thinking hard about them, even though I may not talk about it often. To let you know whatever decision I make isn't made lightly, that I'm aware of what is out there (and yes I've looked at other clinical trials, too) and I'm not being pushed down a path but am consciously choosing where I go. And that it's not an easy choice.
OK, so I'm a little nervous about the scans!
A reading recommendation for you.
Not Fade Away
Interview with the author Laurence Shames
