Sunday, February 24, 2002

Dear all,

Today is 100 days since transplant and I write this sitting in my living room in Montpelier!!!! The last days were slightly complicated by a blood clot in the vein where my central line is, but we managed to leave yesterday, on schedule. The trip was uneventful, but with my compromised immune system, a little anxiety producing. (I think I heard every cough and sneeze within miles.) Susan and Scudder were there at the Burlington airport waiting or us, such a welcome sight. And everything at home was so welcoming. Stuart and my neighbor Leigh had everything in the house working (driveway plowed, heat up, phones on, etc.), Darlene had the house sparkling clean, and the fridge was filled with groceries. There were cards, welcome home gifts and signs. It is wonderful to be back here!!!

I never really let myself picture myself back here, post transplant. And, even, as we started planning to return, and I realized how much I wanted to be back here, I still kept as much of my focus as possible on where I was. I feel incredibly lucky. The care at the Hutch was incredible and I have been really lucky throughout. And, it was so great to have Becky, Steve, my parents and my rotating caregivers with me. Plus Gary and Joanne and Glenn and my colleague Anne. And our incredible Hutch volunteer, Melissa, who even took us to the airport yesterday. Even though I was far away, I felt very taken care of and in the midst of such a caring community of family, friends, acquaintances and medical care providers.

And now, the next leg of my journey begins. Adjusting to being a family of two (and Becky, as you would hope, was off with friends as soon as she got up and had a shower). Getting my medical and daily needs met. While I am doing really well, there is still much I can not do for myself. My primary symptom is incredible fatigue which varies from day to day and from morning until evening. And, then I have all the secondary issues related to the drugs I have taken or am taking -- troubles with my eyes, some hand tremors, atrophied muscles and other prednisone-residual issues, etc. In addition, although my new marrow is working quite well, I continue to take immune-suppressing drugs. So I am very vulnerable to infection. I need to avoid crowds, continue meticulous handwashing, avoid those who are ill, and take food safety precautions. Plus there are lots of things that I will not do for quite awhile (garden, swim, etc.). But all and all, it feels like an incredible gift to be here now. Not at all what it was like to come home from Johns Hopkins with Michael, joyful to be back here and with Becky again, but so incredibly sad that his death was near. That trip home was evoked over and over for me yesterday. And, of course, my own joy that my path has not been the same.

Words seem completely inadequate to describe my appreciation for your continued caring and support. It is impossible to know what goes into the mix that brought me to this point, but I am absolutely sure that all of the energy, prayer andhealing directed toward me was, and will continue to be, a key ingredient to my internal well being. Thank you.

In gratitude,
Ellen

Please continue to include my friend Penny in your thoughts and prayers. She has continued to face enormous physical and emotional challenges.