Friday, December 11, 2009

Day +38

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.



  1. The highlight of my day is when I click on Life is Good and see a positive update from Ron or Ha. Not sure what that says about my life :) but I know what it says about yours--it's coming back to you and your family, day by day. Happy Chanukah...we'll light a candle for you tonight.

  2. Sounds like you continue to enjoy every blessing you have--whether it's momentary relief from a symptom or your incredible family. Startles me to think what I complain about and how hard I find it to take my blessings as they come and stay in the moment. You will be able to offer workshops on it after all this...It is terrible not to be able to rest--I hope you got some sleep this weekend. I hope this week is as light on the symptoms as possible. We're thinking of you.

    xxoo--Catherine & Co.

  3. Hi Ron
    You have a good sense of humor throughout this -- I enjoy reading your posts. I like the fact that you are thinking about working out a "strategy" to get out of dishes and laundry when you are feeling better -- too funny. I know -- get Alan over there to do the chores for you. LOL. Keep up the good work. You are an inspiration to all. Isn't it amazing how strong you are -- both mind and body? Happy Chanukah.
    Gail Kirkman

  4. Ron - Just want you to know we're reading in Yorktown Heights, New York.
    On day 100, when you're allowed to visit the real world and when the real world's allowed to visit you, expect an onslaught.
    You have so many loving friends.
    and family...