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Running With Fear

Confessions of a breast cancer poster child.

Jeanne Sather

Published on December 10, 2003

My career as a breast cancer poster child began in October 1998, shortly after surgeons removed my right breast. Just a few weeks later, the first chapter of Jeanne's Diary went live on the now-defunct OnHealth Web site, with 13 more chapters to follow over the next nine months or so.

I wrote each chapter in the moment?in the early morning when the whole world was asleep but me, or whenever I was overwhelmed. I wrote about my fear of chemotherapy, insurance problems, going bald (twice!), a woman in my support group who died, and about my children, who struggled with their fears that I would die.

The diary, and the attached bulletin board where readers could tell their stories, brought national attention to OnHealth, a Seattle-based dot-com that was once the most widely read health site on the Internet. But that was nothing compared to the attention that resulted when I was fired.

OnHealth fired me in January 2000, just as I was finishing chemotherapy for the second time and was at an all-time low in terms of physical energy and emotional strength. It was a front-page article by another writer, Carol Smith of the Seattle Post-Intelligencer, that put enough pressure on OnHealth to make the company agree to settle quickly. Smith's story triggered a tsunami of bad publicity?local TV, even NBC was calling?and OnHealth just wanted it to stop.

This is where I first entered "poster child" status and embarked on a career writing about cancer as a way of facing my fears.


FEAR: THE LIST

I live with fear. I think every cancer patient and every cancer survivor does. Ever since that first bout with breast cancer more than five years ago, the fear has been like an alien hand, sometimes squeezing my throat, making it tough to breathe, sometimes wrapping itself around my heart.

We Americans find it somehow shameful to admit to being afraid. We don't like to read that soldiers in World War I were so afraid that they defecated in their pants before battle, as Newsweek reported recently. We do our best to make the fear go away, with drugs if possible.

And it's a brave doctor who says the "F" word?fear?to a patient. Usually, it's "anxiety" that we are coping with, or "stress."

Here are my fears, large and small:

Dying, of course.

Leaving my children without a mother.

Akira is a college freshman, an independent and motivated young man, but he still needs his mother and his home. How would he feel if our house were sold and the only home he had was a dorm room?

Robin is only 13. If I die before he reaches 18, he'll leave friends and family, including his brother, and live with his father in San Francisco. Not a great solution for a grieving child who has lived his whole life in Seattle. Would he be able to take his dog with him, at least?

Pain.

Needles and nasty medical procedures.

Being unable to support myself, or perhaps, even to brush my own teeth. Oh, the indignity of that.

And, always, the constant fear that the cancer will return, as it has three times now.


ON A FIRST-NAME BASIS WITH CHEMO

Chemotherapy. That word sends chills down most people's spines. When my doctors recommended chemotherapy five years ago, I was more afraid of the treatment than I was of the disease. I seriously considered walking away and doing nothing after hearing this news.

"How many ways can you say scared?" I wrote in November 1998. "Terrified, apprehensive, afraid, nervous, freaked out?just plain scared.

"For the two months following my breast cancer diagnosis, I rode an emotional roller coaster over the prospect of undergoing chemotherapy.

"Chemotherapy. You know, the treatment where they pump you full of poisons to kill cancer cells and your hair falls out and you vomit for days at a time and the cure is nearly as deadly as the disease. That treatment."

Well, I survived that bout with chemotherapy and the next?when the cancer came back a few months later in the skin where my breast used to be. Then, after my cancer resurfaced Hydra-like in my bones in December 2001, a two-year stint with a miracle drug called Herceptin. And now, as of a few weeks ago, I'm doing chemotherapy again. There is a new tumor, resistant to the Herceptin, in a rib end near my spine. I still get Herceptin, but we've added Navelbine to it.

Before I continue, a plug for chemotherapy: It's not the chemo that your grandmother or even your aunt endured. (One of my aunts went through breast cancer treatment almost 20 years ago. Her reaction to the chemo was so severe that she would start vomiting as her car pulled up outside the hospital.) I have never vomited once during chemotherapy, and I've managed to work at least part time almost the entire time I've been in cancer treatment.

These days, there are good drugs to control, or at least minimize, the side effects of cancer treatment. The chemotherapy drugs themselves are also less crude. Doctors have worked out new doses and schedules for giving these powerful drugs that make them both more effective and easier to tolerate. With the drug I'm on now, Navelbine, I was able to get on a plane to Charleston, S.C., the day after treatment.



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