Tuesday, June 4, 2002

Dear ones,

Time seems to pass by so quickly. I passed my 6-month post- transplant marker several weeks ago!

My energy has improved substantially since returning to Vermont, but it is still a long ways from my old "normal". This past weekend, I had my first post-transplant outing. I went with Steve to Ithaca to celebrate the wedding of an old friend of his. It was wonderful, but I could really see/feel how limited I am in stamina. I continue to walk almost daily, with the distance determined by the energy level of the day. I also continue with yoga and meditation. And, I have been doing a lot more things around Montpelier, still trying to be cautious about my immune system. I am even driving a little around town. I got to learn about and watch migratory birds at a local reservoir as well as in my yard and at the park. Definitely fun. I have even been out to a few live music events when I knew that I could sit away from any crowds. And, I continue to get to screen new movies at the Savoy which has been a lot of fun. In addition, I have taken on a small project for an old client -- feels great to exercise my brain a little.

My blood counts have continued to improve and almost everything is actually in the normal range! My new marrow definitely seems to know what it is supposed to do. Unfortunately, as I have been winding down my taper of immune suppressants, I have had a series of symptoms of graft versus host disease (GVHD). GVHD is what happens when the immune system in my new marrow detects the rest of my body as "foreign". The symptoms were increasingly uncomfortable last week, involving my eyes and mouth and throat and probably my esophagus and vagina. So, I am using topical steroids in my mouth and eyes and have returned to a full dose of immune suppressants -- the level I started the taper from almost four months ago. IF my symptoms go away, we will start the taper again. If not, I will probably be back on prednisone soon. The increase in the immune suppressants has its own unpleasant side effects which require other meds. Quite the domino effect. And, of course, my immune system is, once again, totally suppressed.

As most of you know, I do a fairly good job of making the most of what I have in any moment. But I was really thrown last week by this development. I have to keep reminding myself that there is nothing linear about this (no matter how the "improvement" seduces me to think otherwise) and that expectations about where I am headed are not necessarily that helpful. There seem to be some lessons here that I have to keep relearning. And, I am getting a lot of practice. I remember having the feeling that dealing with leukemia was like standing on the deck of a boat in really rough weather. You have to keep shifting and moving and not get stuck standing in one place, if you don't want to go overboard, that is.

I am organizing a team to walk in the Relay for Life later this month. If you want to walk, or want more information, please let me know in the next day or two. If you can't walk but want to support us, please consider making a contribution. For $5, you can have a luminaria lit to honor someone with cancer or to remember someone. As always, donating blood or platelets is invaluable. And, of course, you can also volunteer to be added to the National Marrow Donor Registry.

Thanks for your continued support, prayers and caring. I know it sustains me on this long journey. I feel so incredibly grateful for all of what I have, especially this wonderful web of support.

E

My hair is returning. Curly as it was after the first round of chemo.