"I have cancer" How hard it was to say those three words when I first came to The Wellness Community in June of 1995

Letter From The Road

Ty Chaney - Article for The Wellness Community Newsletter

"I have cancer" How hard it was to say those three words when I first came to The Wellness Community in June of 1995. Diagnosed six months earlier with advanced stages of Multiple Myeloma, you would have thought after months of intensive chemotherapy those words would be easier to say, but cancer was not me, a nightmare, not me. Going to the TWC was an experiment, up until then I thought I was doing ok, coping, stoic, but maybe just in case I might need help in the future. There was an opening in the Tuesday morning group.

I remember first entering the room, and something in the eyes, in the feeling of the room, like a wave washing over me, I realized how alone I had been. In that room I found the strength and courage to say I have cancer and to fight the beast head on, not only with medicine, but also with miracles of human kindness. It seems sometimes that everything I know, I learned in that room. What to hold on to, what to let go of. To hold onto everything that I want to find in my last breath and try to carry lightly everything else. My Tuesday group, and the Mens group, have given me so much to hold on to, I have no words, only tears of gratitude.

In August of 1995 I was told that there was little that could be done in Boston to treat the cancer, they had run out of treatment protocols. I remember the words "aggressive disease with poor prognosis". They recommended I contact a cancer research center in Arkansas which might provide more treatment options. Arkansas! Where's Arkansas? Within three days we were in Little Rock, Arkansas, undergoing days of testing and consulting with a team of physicians and researchers specializing in Multiple Myeloma. All the bad news of the prior months was "reinterpreted" and I got the first positive news since diagnosis. In January 1996 I had a Autologous Bone Marrow Transplant, not a cure but very effective in buying quality time. In September I received a matched unrelated donor (MUD) bone marrow transplant which is currently considered a potential path to a cure. This last transplant required that my wife and I move to Little Rock for at least one year (while my new immune system rebuilds with the donor marrow).

Prior to leaving for Little Rock, the TWC Tuesday group had been my lifeline, my protected space where human spirit is more powerful than any "poor prognosis". Moving to Little Rock and living in semi-seclusion for a year would be hard. I even went to my doctors in Boston and asked them if I could do the MUD there because that is where my support was, my foundation for fighting this beast. No way, too dangerous&ldots; Ha! We'll show them. So in mid-October it was off to Little Rock.

I would have to say that staying "in touch" with my TWC group has not been difficult. Their hands reached out and held me throughout the most difficult times, I was cradled in love. Cards, email, and phone calls where the hands holding me. My wife Beatrice would read them to me, and even now I reread them when I need strength and a smile. Every Tuesday Beatrice or I would try to call TWC and let them know how I was doing, and hopefully hear how the group is. As I get strength back I'm able to write letters, email, and phone people in the group. Just to be in touch for them and for me.

We each must face this profound struggle alone in some ways, but every Tuesday we shared our struggle, our hopes and fears, big and little. In that sharing I found miracles and the strength to continue. I miss being there very much.

Once I take care of business here in Little Rock, I look forward to coming back. It's all part of my "compelling future" .