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Learning to live with surviving cancer


CONCORD, N.H. -- My wife and I drove up to Hanover, N.H., about a week ago for my semi-annual checkup at Dartmouth-Hitchcock Medical Center. I have lymphoma, and for the past six months I have been in remission.

It was a glorious day of high summer, wildflowers exploding along the median of the interstate. There was a lot of rain this summer, and most of the birches finally stand up straight from the bending of the ice storm of 1998, the winter in which I had a stem-cell transplant.

A couple of the maples showed that tragic flaw of summer -- one orange leaf clinging to an enormous green tree. This is the nagging reminder to those of us who live in the North Woods that winter is coming. On the lakes the ducklings already swim in their V formation so no observer will forget that they are flying south. Their message: Don't enjoy short sleeves too much; the months of wool and down and darkness are just around the corner.

I have that kind of anxious pessimism when I see the doctor. She tells me that there is no lymphoma, that I have terrific blood counts and I now need CAT scans just once a year. This means relief from drinking Tang-flavored radioactive swill that gives me diarrhea and taking an injection that makes my arm feel like it's burning. I no longer need injections of EPO, a genetically altered protein that stimulates my bone marrow to make red blood cells.

I should feel terrific. Somehow I feel guilty.

I am afraid to relax.

The Sunday night that my wife took me to the hospital for a stem-cell transplant that would clean up my cancerous bone marrow, I was interviewed by a social worker who asked me "how I felt about impending death." I said to myself, "death, hell! I'm going to walk out of here!" I decided that I must never give in.

I read in the paper that Dick Gregory has lymphoma. Wil Haygood, one of my favorite Boston Globe writers, quoted the old crusader. "Will bother it," he says of his cancer. "It won't bother me."

Whatever took him through those days and nights of Mississippi and Alabama and jailings and CIA agents following him? Or were they? Will serve him just fine now, he believes.

"He's 130 pounds."

"Bony as a toy."

I do not pretend to have the courage of the leaders, even the followers, of the Movement. But I have tried to find that whatever. Once my goal was to bring my weight up to 130 pounds.

I tried to bother my disease with toxic chemicals. The lymphoma drank it up, grew in fact, on a diet of vinchristine and doxorubicin. I was going to defeat the cancer if it killed me, and it almost did. I survived for my wife and family, who did so much for me. I was buoyed by messages from old friends and colleagues. The Rev. Norman Runnion put me on the prayer list for his small church in Thetford, Vt., and it became important to me not to let those parishioners down.

I poisoned myself anew with cytarabine and Etopocide. I took steroids that turned me crimson and swelled me up like a blood sausage. The disease shrank to streaks on a CAT scan. Did the lymphoma die? CAT scans, another X-ray called SPECT, were not quite conclusive. We zapped my guts with a fusillade of radiation, and I was finally satisfied.

At the end I could barely walk, and it has taken more than a year to be able to concentrate again.

If I got that whatever, now I cannot let it go. Don't give the disease an inch, not even the glimmer of an opening. Now I believe, I feel in my once-diseased marrow, that relaxing is akin to giving in.

I tell this to my doctor, Pamela Ely.

"Survivorship is hard," she said. Perhaps that's the way to look at it: work to make myself relax. That is hard, because winter is coming closer every day.

John Milne is an independent writer who lives in New Hampshire.

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