Today marks the six month anniversary of my transplant. I would love to be sitting here in a state of remission, but even though I'm still dying I thought it was worth noting. The odds are certainly against me to make it a year past transplant, so I value each day. I try to remember that I've beaten multiple odds just to be at this point, and that I am an individual, not a statistic. I was essentially killed four times in as many months last year...sometimes I wonder how it is possible that I am still alive.
I've been using a much smaller bandage on my central line, giving the majority of the skin some time to heal. It seems to be doing so, slowly but surely. I'm still not sure what to do about the skin immediately around the site. Someone mentioned an alternative bandage that I am not familiar with -- I need to check with my doctor to see if it is an option. I was originally told central lines only stay in about six months, and I'm past seven months now, so I'm not sure if they really know what to do once the skin starts rejecting adhesive. Thanks for your prayers. I'm really grateful that the site itself is remaining free of infection. My counts will be falling this week, so it's especially important to avoid infection.
Friday at 8 a.m. I'll be at the Siteman Cancer Center (Barnes) for my next DLI. It will be a larger infusion of cells this time (last time was 10 million) and the same prayer requests apply. It would be "good" to have manageable GVHD and the Graft vs. Leukemia effect. I will be honest and say I am dreading Friday. Anyone who knows anything about GVHD knows why. It's like holding a loaded gun to your head and pulling the trigger. I just can't help but feel a little crazy for going through this again, but I know I don't have any real options. Times like this I stop and remember I'm dying, and any benefit outweighs the risk at this point. I'm anxious to see what my labs do this week. We've been told repeatedly that it takes at least three months to see an effect from Decitabine, and since I've completed three courses I'm really hoping the blasts stay down this time and don't bounce back up again. I watched a documentary on Discovery last week called "Living with Cancer." There was no mention of God at any point during the show, but other than that I found the comments by those being interviewed echoed a lot of my own thoughts. Lance Armstrong talked about taking a crash course in oncology, and always getting copies of his labs and test results and viewing them like a score in a competition. I've approached leukemia in the same way -- often living and dying emotionally by the latest results. Not sure if that's the best thing to do, but to fight is to live in my opinion.