Sunday, June 23, 2002

Dear Ones:

Friday night and early Saturday morning, the FEIN FEAT team walked in the American Cancer Society's Relay for Life fundraiser. There were 23 registered walkers on our team plus another half dozen or more friends and family who walked. Among us there were 9 cancer survivors! The
opening lap (around the local high school track) of the event is for survivors and the second lap was for teams and support people. As I walked that first lap with friends and members of my energy healing group and all the other survivors present, people around the track were clapping and giving us thumbs up signs. It was incredibly moving, reminding me how great it is to (still) be alive and what a challenging journey the past 18 months have been. And, to be surrounded by others living with cancer and those supporting us was surprisingly emotional. Thanks to everyone who walked, those who offered moral support and those who helped us raise money. And the incredible healing amulet that my sister Beth made for Michael, was passed along among some of our team walkers, collecting energy from everyone. Look for pictures coming to the web site soon. (link to them!)

And, early yesterday morning (after walking from midnight to one am with Ellen DF), Becky took off for California. She will spend three weeks at UC Santa Cruz taking a Johns Hopkins program in design (the Michael Goldfinger genes at work) and then a week with my sisters, Judy and Beth, and their families in the Bay area.

It has been a really challenging period for me. In many ways, my health has improved tremendously. My blood counts are completely normal for the first time since diagnosis. The anemia that has been present is gone. My energy is decidedly better although nowhere near my old "normal". People tell me I look really healthy. At the same time, I have a confirmed diagnoses of chronic Graft versus Host Disease (cGVHD). What this means is that my new marrow (the graft) is functioning well but not entirely happy in my body. It recognizes some places in my body (the host) as foreign and is attacking those. Overall my GVH is considered relatively mild but I have been plagued by a variety of symptoms which have ranged from mildly annoying to downright distracting. And, occasionally painful. As a result, I am now on a full dose of immune suppressants and will continue to be for 9 to 12 months! In addition, I am using topical steroids in several locations. So far I have avoided a return to oral prednisone. And, a number of symptoms, but not all, have improved greatly. Unfortunately the medications have side effects (besides just immune suppression) which can be unpleasant and require other meds. I have had some periods in the past few weeks where eating was once again impossible and I returned to a liquid, meal in a can, diet. And, my eyes were so bad at one point that I could barely use them or get them to feel comfortable. Thank goodness, both of these problems are resolving.

So, I have been really struggling with how to live in these circumstances. I will continue to be quite immune suppressed for at least a year. There are a few absolutes for my safety (NO gardening and some food precautions), but mostly there are some general recommendations and lots of gray about what might or might not be okay for me. Handwashing continues to be a primary defense. I have returned to yoga classes and the health club both of which feel great but are not risk free. I even went to a movie with Becky. I am taking recommended precautions but I am obviously taking some increased risk by doing these things at all. And, there is nothing about my health status that is assured. So, it is impossible to know what to expect.

I feel increasingly better and I have a number of limitations (particularly related to my vision and overall stamina). When I go places, I certainly am acutely aware of the limitations and of my vulnerability to getting some type of infection. Yet, to any onlooker, I appear so healthy. Recently I had two experiences that reminded me of what I need to navigate. Some old friends took me sailing on Lake Champlain on an absolutely glorious afternoon. Another day, I drove with a friend to the top of Mount Mansfield where, after a short walk over some rock, there is a magnificent view of the Green Mountains, White Mountains, Lake Champlain and the Adirondacks. On both of these trips, I was so thrilled to be out, alive, appreciating what was around me (both the people and the environment) but I also came face to face with some of my limitations (eg., no longer sure footed enough to feel comfortable scrambling over some rocks nor seeing well enough to untie lines on the boat). It is hard to accept that the person I was and the capabilities that I had are not what I am at this moment. And, I have no way of knowing what will happen next.

The practice of yoga and meditation certainly help and I can really see how some substantial equilibrium is returning. But, I have had some moments in the past weeks, where I thought how wonderful it would be just to get a day off from my life. Of course, not something I get to have. So, I just keep putting one foot in front of the other. And, thankfully, I cannot help myself from seeing all there is to appreciate.

Your continued support and caring is such an important ingredient in my continuing journey. Hope each of you is making time to enjoy the arrival of summer.

E

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