Now this is strange.
Last night I applied a steroid ointment to my thighs and abdomen and then covered those areas in plastic wrap. It sounded a little odd when my new dermatologist specializing in graft vs. host of the skin suggested I try it, but it actually was no problem.
So I have this late onset thing that has crept up on me, a hardening of the skin with a ripple effect. Right now it is just cosmetic, but the concern is that it could spread and hamper my movement. Great. So I go through all of this and then turn to stone. Pardon the hyperbole. The first step is to continue with the ointment and wrapping. I will go back in three months and re-evaluate.
Other options are more prednisone, to which we all say no.
There are other non-steroidal treatments including photopheresis, as I learned on this page about late effects after bone marrow transplant:
Extracorporeal photopheresis (ECP) is a promising therapy for chronic skin GVHD. In this procedure, blood is removed from your body, treated with a chemical and radiation to kill certain white blood cells, and is then returned to your body. The mild side effects of ECP include an intermittent drop in blood cell counts. Surprisingly, this treatment does not seem to cause immunosuppression and has the added benefit of being much less toxic than other treatments, since the exposure to radiation takes place outside of the body. The main drawback of the treatment is that it requires a substantial time commitment and several months of therapy before it can be determined whether or not it is effective.
It would require a couple of times a week for those several months. I don't even know if they do it around here, and since it is time-consuming it would be a last resort.
The day before, Dr. Lin removed a spot near my eye for a biopsy. She calls my spots "the little guys." It had looked like a possible squamous cell to me, and she said it is probably that or precancerous. In the process she gave me a black eye. Well, actually a purple one on my eyelid. If I apply purple eye-shadow on the other side, I will be all balanced out.
We talked, and if that is possible, had a good time while she froze some other spots. She says I am tough.
I had a late lunch with my friend Rook, and thanks to good conversation, coffee and a molten chocolate cake, I did not get sleepy on the way home.
By the time I got to Jane and Jim's house to get Maddie, it was already about 7 p.m. I didn't expect to have much dinner, but Jim had made lasagna and had a plate ready for me. Jane had taken care of my children and now they both take care of Maddie and of me.
It is nice to have such good people around.