Wednesday, October 16, 2002

Dear Ones,

It is hard to believe, but I am coming up on the one year anniversary of my transplant on November 16! I will be returning to Seattle for a week in November for a one year check up. Becky, Steve and my folks will be going with me. Since the week will include the Thanksgiving holiday, we will be able to celebrate together. We are all looking forward to the return visit.

My life continues to be a journey that is not neatly summed up in a sentence or two. I have been really excited and energized by the CancerGuide training I attended in August and by doing work with people with cancer. I have been doing a fair amount of work with individuals by phone and computer, helping find information and resources, strategize about getting through treatment and just listening and providing support. I am also mid stream in getting a range of mind body services (yoga, meditation, a mind body skills and support group, etc.) going here in Central Vermont. I will do one or two of these things myself and I have been working with other people to do some. This certainly feels like the work of my heart. I have also been doing a small amount of paid work for the National Council of Community Behavioral Health Services. But, as has been the case for almost two years, everything about my day to day life is circumscribed by my health status.

Since my return from Colorado, my physical health has been really uneven. I have had intermittent difficulties with my kidneys (probably a result of the immune suppressants I take). This in turn has caused me some incredible fatigue (the type that makes me truly a "couch potato"), problems with hydration, nausea, etc. With the help of my local doc, David Ospina and his wonderful nurses Edie Fontana and Elaine Owen and the consulting staff at the Hutch in Seattle, we have been adjusting my meds, ruling out other transplant complications, keeping my graft versus host disease (GVHD) under control, etc. This is not at all a straightforward proposition and I actually had my first, post transplant hospital admission earlier this month.

So, it seems, I am forced to really live in the present, truly knowing that I cannot know what any given day, or the next, might bring. At the same time, I am continuing to carry on with my life assuming the best for today and tomorrow, but always with contingencies. Not an easy task, as I am sure you can imagine.

Thanks to those of you who have been feeding us, dropping off soup, grocery shopping, and just sending your good wishes, energy, etc. As always, I am overwhelmed and humbled by the support and generosity of the support in our lives. And gratitude does not begin to express what I feel.

With much appreciation,

E

PS. For those of you who got a weird e-mail a few lines long that seemed to be from/about me, it was some weird computer virus, the mysteries of cyberspace.

http://www.oocities.org/ellenfeinwebsite/