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Saturday, March 22, 2003 Dear All, Well, there isn't much news on the medical front, but I know some of you are wondering how I am and what I have been doing. So here is an update. I continue in remission with what is considered mild, but extensive (a lot of places), graft vs host disease (GVHD). I am coming to think of this as living with a disability with a lot of variability and unpredictability. It is definitely an art form to live this way with the precarious balance -- the GVHD symptoms, the meds, and the side effects of the meds. And I continue to have episodes of symptoms that are extremely disabling. But, all in all, it seems a small price for remission. It is wonderful to be alive and to be able to enjoy so much. I am continuing in my cancer support activity. I am teaching yoga to a couple of women with cancer, talking with individuals, co-leading a cancer education group, facilitating a weekly healing meditation group. Not much pay as yet, but I suspect that will come. And, I am still quite limited by the ups and downs of my symptoms so sometimes I cannot follow through as planned even with these commitments. Most exciting, my book -- NOT JUST A PATIENT, How to Have a Life When You Have a Life-threatening Illness -- is now available! You can purchase a copy by visiting <http://www.trafford.com/robots/03-0223.html>. Copies will be locally available at Bear Pond Books in Montpelier in early April. As part of the promotion for the book you can find me in person at:
If you want more details, let me know. My real purpose in writing the short book was and is to help other patients and families find information that can help them live well and beyond the "patient" identity. Towards that end, I am raising funds to purchase books that can be given free to patients. If you would be interested in contributing to this fund, please let me know. And thanks to those who already have helped me get this launched!!! Lastly, this book would never have become a reality without Rebecca Davison who encouraged me and helped in so many ways! About the other parts of my life: I have enjoyed the snowy winter and have been x-country skiing for the first time in three years. I work out at the health club when I feel well and walk my dog almost every day (although some days were TOO frigid). I see friends, go to the movies and all those everyday things. Always trying to be careful of germ exposure as I continue to be immune suppressed. Becky is well. She is managing the high school's one act play. Her social life continues to be busy and she is working part time. But as some of you know, she is ready for an educational experience beyond what is available here. So, she will be leaving Montpelier HS at the end of this school year. She has been accepted at Simon's Rock of Bard College as a college freshman. Simon's Rock specializes in taking 16 and 17 year olds without high school diplomas. This seems like just the right fit for her. And, some of you know that my mother was diagnosed with early-stage breast cancer in November. She has just completed treatment (surgery and radiation) and she has done wonderfully. She has shown great physical and emotional health. And my dad has been a great support. We are looking forward to having the entire family together for the first time since before my cancer, to celebrate my dad's 80th birthday. Steve is well too. Busy and traveling a lot. But we get to see each other every 2 to 4 weeks. And we spent almost two weeks together over the Christmas - New Years holiday. My apologies for the long windedness of this message. I appreciate the incredible love and support you continue to provide. Think peace. E |
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