I know how far out I am, but to see it on Dr. Alyea's screen at Dana-Farber yesterday was something else: five years, 10 months, two weeks.
Younger than Maddie, but older than I ever thought I'd be.
My counts were excellent: white and red both normal, with my hematocrit as an all time high of 35. Platelets were good too: 140, which although lower than the normal range of 150-450, is excellent for me.
My liver enzymes are lower (which is good), so I get to decrease my prednisone to 1 mg. a day.
As he shook my hand to say good-bye, Dr. Alyea said something that I wrote down so I could remember the exact words: "There's no greater pleasure for us than to visit with you."
Music to my ears.
Then I was off to see Dr. Lin for a PDT follow-up. She was pleased, although she did zap a few spots that had resisted the light therapy.
She also told me the answer to a certain mystery. I had complained to friends that I thought my stomach was getting fat despite all my exercising and Pilates classes. But it is not fat after all, and it looks a little different. It is graft vs. host of the skin. Sorry, TMI, but I also have it on my thighs. Always something.
One treatment is more prednisone, but I definitely don't want to do that. Dr. Lin has prescribed a cream and a visit in a month to yet another specialist, a doctor who focuses on graft vs. host of the skin.
I never did get my eyes checked out for the graft vs. host that I have been treating with Restasis eye drops. My appointment was at 3:10. I think they must triple-book. Two hours later when there were people before me and I still had not been seen, I was so angry and frustrated that I up and left.
I will reschedule for an earlier time when they are not so backed up.