My follow up at MGH today confirmed these crazy, mind altering drugs are working, as the skin rashes seem to be improving and my liver enzymes continue to decrease. On the positive side, I have learned how to operate this week on 2 - 3 hours of sleep each night, and I have been eating outrageous amounts of good food (and not really gaining any weight). On the negative side, I probably should be getting more than 2 - 3 hours of sleep, and I probably should be gaining weight (as I am currently still about 20 pounds lighter than my pre-surgery weight).
Dr. Chen is pleased with my progress and feels that for now, we have the GVHD under control, but he did acknowledge it can flare up again at any time, for any reason, so I am not entirely in the clear. For now, I am starting to feel better physically and emotionally, which is a welcome relief, but I must continue with the onslaught of multiple drugs, which will most likely keep me wired and exhausted for the next couple of weeks. They did allow for a very slight reduction in my Prednisone, which is a step in the right direction, but evidently, they need to reduce the dosages slowly, so it is most likely going to be a month or two before I see any real marked improvement with the side effects of all of the drugs.
I have been able to spend more time with Mai and Tal and they are now able to give me cheek kisses (my idea, not doctor's orders) and Mai says kissing my cheek makes her feel like we have our normal life back. It breaks my heart to hear her say that, but also makes me feel so good at the same time.
That is all for now. Despite some continued side effects, in some ways I feel like I have turned a slight corner over the past few days and find myself smiling a bit more and enjoying my time at home. As Ha and I keep saying to each other.... if we can just have our old lives back, we would be the happiest people alive. Doesn't seem like too much to ask.
Thanks again for all of your thoughts, funny emails and well wishes. You have all made me realize how generous people can be. Have a great weekend.