After my last appointment at Dana-Farber I wrote that I have to increase my prednisone to 10 milligrams from 1, then I wrote that I was questioning it, and now I have a resolution.
It's hard to question a decision when you are at a place like Dana-Farber but also important to remember that although geniuses, these doctors are human. Still, while waiting for Melissa to call me back after I sent an email stating my concerns, I was nervous. I'm not sure exactly about what. Probably about the whole upcoming process of the ECP and focusing on one particular concern i.e. the prednisone.
Melissa called Monday afternoon and said she and Dr. Alyea agreed it's not great to do two things at once because when hopefully the procedure works you wouldn't know which one improved the GVHD. And even with this low dose, there are side effects. For example I am looking at my left arm which has pools of blood forming under my thin skin, creating purple blotches which I haven't had for a while.
As my mother's daughter, I enjoy wearing rings, but I can't do it now because my hands are swollen. They were willing to avoid the ECP until my hands started showing the effects. The ring that I got in Spain is adjustable so I thought I could squeeze it on. The stone popped off and I put the two pieces in a bowl and looked at them until this morning when I decided to put them back together with the same sticky glue that I used to fix my glasses.
At first it was problematic because the purple gloves I was wearing got caught up in the glue and I had to pull the pieces off without gluing my skin like Joe did when he was a little boy.
I finally succeeded although a small piece is still stuck to the bottom, which is OK because you can't see it.
Fixing the ring might mean that I am ready to get fixed.
Two times a week, three hours each, three months, and an overnight in between.
There is no feasible alternative to going to Boston. New Haven and Bangor, Maine are the only other places in the near vicinity.
It is not in the same league as preparing for cancer treatment, but there is a similarity in that once you get over the hump and make your plans, you just go and do it.
Depending on how I feel after the first session, maybe it will be a chance to catch up with friends in the Boston area. Or at least buy a new hat.
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