Friday, August 16, 2002

Dear Ones:

Well, August 16th marks my nine month "rebirthday" since my transplant. Nine months seems like quite an accomplishment. A great deal has occurred since my last update following the Relay for Life in June. My apologies in advance for how long this is likely to be.

Through the remainder of June and into July I struggled emotionally to find a way to live with my graft versus host disease (GVHD) and what now looks like it will be an extended period (probably more than another year) of drug induced immune suppression. And I have had multiple GVHD flares mostly in my mouth and throat since the initial symptoms. So far, I have managed the symptoms with only cyclosporin (a big immune suppressant) and topical steroids. Unfortunately, I seem to be one of those few people who gets prednisone side effects from the topicals. Fluid retention, some sleep problems and the mouth products often make me queasy and can cause thrush. But the other GVHD spots seem to have mostly cleared up. In addition, we have had a tough time getting my cyclosporin blood levels to stabilize which has caused a variety of problems. And, my vision is sometimes quite impaired by it as well. So driving is, again, sometimes impossible, as is reading, computers, etc.

Nonetheless, in mid July I headed out for a two week adventure while Becky was off in UC Santa Cruz and visiting my sisters and their families (where she had a wonderful time). Steve flew up and we drove off to Cornell where he was involved in running the annual Computer Policy and Law summer conference. This was a policy conference (his thing, as some of you know) and not really technical. Great to see him in his element and so incredibly competent and able professionally. I went to a couple of sessions that were incredibly interesting and fun. And the faculty and participants tended to be lawyers and university policy types. Smart, funny and interesting and I completely enjoyed their company. Ithaca was beautiful. The weather great. I managed to get outside every day and also to some yoga classes and use the health club on campus. However, being out in the world, immune compromised turned out to be incredibly challenging. And almost every meal presented problems - break my supposed "rules", eat foods I shouldn't be, or worse yet, none at all. I broke a lot of those rules, judiciously, I think, and seemed none the worse for the wear. But it was surprisingly exhausting and required a level of vigilance that I had not really anticipated.

From there, we flew (my first plane trip since returning home from Seattle) to DC. My brother-in-law Bob Goldfinger picked us up and my mother-in-law, Ethel, arranged a scrumptious Goldfinger get-together brunch at her house. And I even got to see my friend and colleague (for the first time since she was my caregiver in Seattle) Jeannie Campbell. But mostly, I just took it easy. I was exhausted.

I had hoped to head off on a yoga retreat at Kripalu while Becky was away, but that was not possible because of some facility things that did not seem healthy for me at Kripalu. At the last minute, before leaving for Ithaca, Shanti Norris who runs the Smith Farm Cancer Help Program (the Commonweal affiliated retreat center in MD) said she might have an opening in the July program which was the week following the Ithaca trip. And, I would say, since deciding to go there I have been on an amazing journey of healing, self discovery and opening of unbelievable possibilities. I had been a little concerned about repeating the experience because my group last summer had been SO fantastic and the program structure and activities are the same at each retreat. But the second time was even better than the first, if that could be possible. No food worries. Laura Pole, chef extraordinaire, completely took care of that. Even when I had a GVHD flare there and needed a liquid, non acidic diet, she and her staff made me beautiful, tasty, things that soothed my discomfort. I could go on and on about the week, but will spare you. It was very rich on many levels.

One of the outcomes of the week was completely surprising. I have been thinking ever since Michael died that I wanted to do something with this cancer experience. I had imagined before my own cancer, becoming something I thought of as a cancer "coach". And many of you know I am spending a lot of time doing that in an informal way with many people in Vermont, friends and family and via the Internet. I had been interested in this training that Laura Pole had told me about for health and mental health and complementary providers as "CancerGuides", sponsored by the Center for Mind Body Medicine. Well, it turned out that the training was to be in Aspen, at the SAME place, overlapping with the time I had been planning to accompany Steve there for a meeting. I had been waffling a little after Ithaca because I was not sure about living with the challenges once again. But while at Smith Farm, I called, made the arrangements and that is where I am writing to you now. And two Smith Farm staff are here with me.

The conference is a week long and ends Saturday. It is a mix of didactic on both traditional and complementary and alternative medicines. And it is based on the premise that the guide must be really present, use mind/body techniques themselves and be able to take care of themselves. It has been nourishing and stimulating on so many levels. Since I started at Smith Farm a few weeks ago, I see both all I have to learn from opening my heart to others and also what I have to offer out of my own heart/mind experience. There will be much more to follow about this once I have digested these experiences some more. But I am intending to turn this into the central work of my life to whatever degree I am able.

And, it is kind of funny. I got here a week ago Wednesday. I took some easy walks as I adjusted to altitude and it was glorious. I could hear my yoga teacher, Robert Brower, saying "it doesn't get any better than this". And that is how I felt. Alive. Grateful to be here. Appreciating the views, the birds, the mountains, and just being alive. On Friday I got very ill with altitude sickness. And the day and a half that Steve and I were to have between our two conferences was spent in two visits to the ER, one via ambulance. Thank goodness for help from Peter Dale who was on call at home, the folks at the Hutch who worked with us and then the ER doc to make a plan, and the incredible hotel and hospital staff. With the help of oxygen at home and drugs (including a new oral steroid), we managed to get me better. But, for awhile it looked like I might be heading home at the beginning of the week. And, of course, Steve was unbelievable and just rose to the occasion. Unlike all of his other caregiving, this required a new and different level of assertiveness and case coordination. But of course, he was completely able. Of all the health problems I thought could occur, this was NOT one of them. Nonetheless, I have gotten through the week fairly well. My stamina is marginal for a conference this packed, and being sick a few days and sleep deprived from steroids doesn't help. And, the food stuff seems easier. Practice, I guess. . . .Anyway, I have an incredible sense of well being and traveling on a road that is just where I need to be right now.

Again, my apologies for the length. You probably can't tell, but I have actually been trying to be brief and skip a lot. Oh well. More once I am home. Love to you all and thanks for your ongoing support on this journey.

E

I hope you will take a few moments to send your prayers, healing thoughts and/or energy to all those you know and those known to others on this list who are on their own healing journey.

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