Sunday, January 27, 2002

Dear friends and extended support system,

Sorry it has been so long since I have written, but fortunately, there has not been lots to tell. My medical team feels I am doing really great and are extremely pleased. That is not to say that there have not been lots of bumps to deal with since last writing. The largest probably is life on mega-doses of prednisone, which has been more than a little challenging. So far, however, my taper is moving along as planned, with no signs to date of any more aGVHD (acute graft versus host disease). If this continues, I will come off of prednisone in a couple more weeks. But the lower dose has allowed me to get more sleep (now between 5 and 7 hours a night) which has been a real improvement. I have had a bunch of symptoms related to the prednisone which required attention, a couple of non-systemic infections (par for the course when you are on immune suppressants), and some occasional problems with my digestive system. But overall, I feel much better than I had expected to at this point, and I am still able to appreciate and take a surprising amount of pleasure in every

I am still doing yoga and meditation whenever my sleep ends each morning/night, and also using the recumbent bike and walking almost every day. So glad that exercise is so much a part of my normal life and something I derive a lot of pleasure from. Of course, with the prednisone, all I am probably doing is keeping my muscles from atrophying -- I still need help getting up if I squat down, as my quads barely work. But, the exercise is psychologically great for me and I am sure it has helped me keep my weight stable. I continue to have the famous prednisone look which Sandy Forquer, one of my caregivers, relabeled as my transformation to a buddha -- very round face (which sometimes still surprises me in the mirror) and very round, almost pregnant-like, belly.

Becky and Steve had a trip east. Steve for work and Becky for a cousin's Bar Mitzvah and some visiting with her grandmother, aunts, uncles, and cousins on the Goldfinger side. I had a week by myself with Sandy as caregiver. It turned out to be wonderfully quiet and restorative. I enjoyed the time. My life and time is pretty well filled with activity of one sort or another and people, so this was a great change. Or course, it was also wonderful to have them return.

Ellen David Friedman was here this past week and, part of the time, her son Eli as well. The three of us were in Kirkland having a walk and lunch with my folks when a bald eagle came soaring around. I think I might have already mentioned that my folks are housesitting in a house right on Lake Washington with an incredible view of the Olympic Mountains (when it's clear enough to see them) and unbelievable bird watching. Ellen and I spent a good part of the time with binoculars standing and watching this beautiful sight.

Some of you have asked what is next for me and when I might return to Vermont. The tentative plan that transplant patients are given is that discharge usually occurs around day +100, which for me would be February 24. Starting the first week in February, I will be getting an extremely comprehensive medical workup to look at how I am doing, and if there is nothing unexpected, to start preparing me to return to Vermont. I suspect that the data from that workup will not be complete until mid-February or even a little later. So, at this point, we are beginning to think about the transition home, but we will not have any specifics for awhile.

Whenever I return, I will be on immune suppressing drugs for quite awhile. My patient manual says that I need to maintain immune-suppressed food safety precautions, avoid crowds, stay away from people who are sick, keep out of my garden, etc, until a minimum of 12 months post transplant. And that timing will depend on whether I am still on immune suppressants or any prednisone. So, although I am doing really well, I will be recovering for a considerable period of time. I still have fatigue and sometimes simply am too exhausted to move, and I need help with lots of tasks of daily living (cooking, managing and organizing some of my medications, etc). It was great to have Ellen DF here this past week and to begin to think about what I will need for caregiving and support when Becky and I return home.

I feel really grateful that I have been able to enjoy so much in every day here. And, it goes without saying, that I am grateful for the way I feel carried on a giant wave of healing and energy and support coming from this wonderful community and sometimes from people I do not even know. It is great to see the possibility that I might get home soon and continue to feel well, but I try to keep in mind that there are no guarantees here.

Please continue to hold my friend Penny in your thoughts and prayers as well. She is making great gains but still has a really challenging road, one so much more difficult than anything I have had with my own transplant.

Thanks again for being with me in the ways that you are.

Ellen

PS -- My wonderful volunteer Webmaster, Cecely Conrad, has recently become inundated with work and other tasks, and so I am in the process of transferring that responsibility to someone else. I have some great pictures which I hope to get loaded sometime soon, and also the latest ellennews postings.