Thursday, March 28, 2002

Dear ones,

It is hard to believe, but we have been home a month already. It is wonderful to be back in our own house, with our friends and community, and, of course, our dog. For those of you who imagined we returned to spring: We have not. It is still very much winter here -- which I am thrilled about. Although the birds are singing and remind me that spring will return soon.

Becky's reentry into life in Montpelier has been easier than anticipated. She is glad to be back with her friends and has a full social life with a range of non-school activities to enjoy. Her readjustment to school has not been difficult, and she has settled into the schedule, homework, etc.

My own reentry has been far more complex and challenging. On the medical front, I continue to do well. It is wonderful to be back with my local doc, David Ospina, and nurses, Edie and Elain, as well as the other folks in the Mountainview Office. Definitely got an incredibly warm welcome upon my return. I have managed to get off IV meds since my return, so last week my Hickman catheter, the central line in my chest, was removed. An outpatient surgery procedure that was pretty easy. And, I continue the slow taper off immune suppressants. I have had some small symptoms with my digestive system and eyes, but my only significant physical complaint really is unbelievable fatigue. Gone is the wild energy I had when I was on prednisone. Now, I have days where just getting showered, organizing my meds and napping are about all I can manage. My energy is very uneven but most days I manage to get my dog out for a walk and recently, I have been able to reestablish regular yoga and meditation on an almost daily basis.

I have been well taken care of by my friends and acquaintances. Groceries, runs to the drug store, walks for my dog when I am too beat. And even though I know full well that others like being able to do things that are helpful, it is hard to ask. I am not driving, which creates its own limitation. And, my immune system is still pretty vulnerable so I am trying to be careful about my exposure. I have trouble with the idea that I cannot do things for myself that I am used to doing. Seems like a long journey of readjusting my concept of who I am. And, of course, I am readjusting to living here as a single parent without a partner. I miss the caring and companionship that I had with Steve in Seattle.

Many of you have asked about what will happen for me now that I have had my transplant and am in remission. And the answer is that there is no way of really knowing or predicting. I will continue to take a wide range of medications at least through the one-year anniversary of my transplant (next November). I am likely to develop some amount of Graft versus Host Disease as I decrease my immune suppressants. Depending on how this manifests itself, I may need to return to higher levels of immune suppressants and that old favorite, prednisone. There does not appear to be much way of predicting this. When will my stamina return? I really have no way of knowing. Some transplant patients feel back to normal energy levels within a year and some never do. Again, this can be greatly influenced by what kind of meds I need to take. Am I "cured"? Cure means that my disease is permanently gone, and we can not know that. I am in remission, which means there is no evidence of disease in my bone marrow or blood. And we know from the tests done before I left Seattle, that my cells are 99.5% from my donor, which is great. Will this last? There is no way of knowing but, according to the statistics for people with AML who get a transplant while in first remission, I have certainly greatly improved the likelihood of a sustained remission.

So my task at hand is really learning to live with all of the uncertainty, and that is definitely challenging. I am practicing not wanting what I do not, or can not, have. No small task. I am surprised how hard it is. My pull to hear live music, make travel plans, think about tending my gardens -- are all things I need to let go of. I certainly would like to be able to do these things again, but for now, I can't know if or when that will happen. In the meantime, I enjoy walking with my dog in the park on the beautiful snowy trails, seeing the birds at my feeders, listening to CDs, watching movies, reading, doing a little writing, visiting with friends, and even taking an afternoon nap on occasion.

Thanks for the cards and messages, offers of help, and your company and energy as I enter this new chapter.

With much love and appreciation of your support.
Ellen

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