I read another blog this week by a woman about my age who also has AML. She's currently undergoing the same experimental treatment as me (decitabine) and expressed that if this doesn't work, it's the end of the road for her. I understand the emotional rollercoaster she is on. Fighting to live. The good days for us are the worst days for the rest of the world...our feelings become very relative. My definition of "good" has come to mean an entirely different thing than it did a year ago.
That being said, things are going as well as can be expected right now. Chemo week came and went without too many horrible side effects -- just the standard complaints. I've been able to keep my weight up for the most part, and finally exceeded my starting weight from a year ago. It's still too early to tell, really, if the decitabine is working, though it appears that the disease isn't progressing at a rapid pace. I'm still here -- that's proof enough, I suppose. I still require regular transfusions. Red Cross commercials make me cry. I don't think people really realize the gift they are giving when they donate blood product. It is truly a gift of life. My counts are low this weekend and I am fighting the weariness, shortness of breath, aching muscles, and all that goes with it. It has me actually looking forward to spending Monday getting transfusions.
I may not update for a little while, unless there is something important to note. I'll see my oncologist on May 2nd, do a week of chemo starting May 7th, and have another DLI on May 18th. I'll be getting a much larger "dose" of cells this time, so I would appreciate prayer that it is effective without killing me. Trust me, we transplantees view GVHD with much fear and trembling.
As always, thank you so much for your prayers, love and support.