This will be my 1.5 year post-transplant scan - it's important. From what I have read, my relapse chances drop to 20% (still high! but better than my current odds of 50%) if I can make it to the two year mark without a relapse.
I don't know what I can do to make this scan clear-- I have worn sunscreen, eaten and exercised better, and tried to keep my stress down. I haven't felt any lumps or pain yet. I guess the thing I have to tell myself is that there is NO REASON why Tiffany G. Williams shouldn't be in the successful 50% group! I am just as karmically deserving as anyone else, so I am just praying and hoping that my insides are still clear. I keep thinking about the radiation I had and hoping if there were any leftover cells in there, they they got zapped up...
But just in case, I have looked at a few options: first I would get my tumor block tested ASAP for Epstein Barr virus, and if it's positive, send it to Baylor Texas to be enrolled in the lymphocytes trial where they grow killer blood cells and put them back in you (aka no side effects/chemicals)
If that doesn't work, I will then go to SGN-35 which also has fewer side effects and now that it's FDA approved I can probably get it in DC.
My last resort would be RAD001 or a similar trial.
I suppose I would see if any of my family or the donor registry are a DNA match for an allogeneic transplant, but I am not sure I actually want to do that. I do not want to be miserable, debilitated, and racking up all kinds of medical bills that my family would have to pay if I couldn't work again (or if I died). I am just not convinced it's worth the pain and suffering. But luckily I have a few stops before I have to make that choice.
It's so hard some days to go about planning out or even daydreaming about my life (B's visit, work trips, moving to a new apartment, getting married and having a family) when it could be taken away at any moment, despite everything I have done to try and take care of myself. It's actually devastating sometimes and I feel like I can't fully commit to things, not because I don't want them but because I am afraid I will end up thinking I am going to get them, wanting them so badly, and then suddenly, one day sitting at the doctors office, will find out that I will never get to have them. I try not to show it, or to dwell on it, but it does feel like a little piece of me is always holding back a little-- can't wait for that 5 year scan when I can say the word CURE!!
No comments:
Post a Comment