I wasn't sure how to title this post, as I think the end probably began a long time ago. But once again it seems we've hit what may prove to be the end of the road rather than a mere bend.
I have stopped responding to Decitabine, and my doctors at Ellis have basically said there is nothing more they can do for me. They recommended contacting my transplant doctor at Barnes to see what they could offer me. I don't qualify for any of the current clinical trials and though a second transplant was mentioned earlier in the week, my phone call with the doctor this evening was less than promising as he summed up a second transplant as the "height of medical futility." His recommendation was a type of FLAG treatment, which as some may remember was also recommended back in February. We chose not to go that route then, and I don't see why I would choose to go that route now. I was told that if I could achieve significant remission with FLAG (assuming I survive the drugs and still have enough bodily function to qualify -- which with these drugs is a long shot) they may consider a second transplant at that time. Given the fact that I have never acheived remission I feel they are basically trying to pacify me with a treatment that is basically a death certificate. Being told that if I am admitted I can expect to never leave the hospital isn't exactly encouraging.
For now the plan is to go to Ellis Monday morning for lab work and make as many phone calls as it takes to get as many second opinions as possible, and try to get in to see my local oncologist on Tuesday before going up to Barnes also on Tuesday, where we will discuss the options with my transplant doctor. He said I can plan to be admitted from the clinic -- I may take my walking papers and come home to die. Though, I am not naive enough to believe that death for me will be either at home or easy. This is when you sign the papers telling your family it's o.k. to pull the plug, because that's basically what you know it will come down to.
So, needless to say, we ask for your prayers, that someone will come up with something -- that the doctors may have a change of heart about a second transplant. I know it is a longshot, and I know it is a horrible, horrible procedure. I know that better than anyone. But I don't want to be told I'm out of options, and I don't want the only options presented to me to be ones that are merely a terrible way to die.
Storm heaven for us, please. We need all the wisdom God can give.