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Running With Fear

Confessions of a breast cancer poster child.

Jeanne Sather
Photography by bootsy holler
Jeanne Sather

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Jeanne Sather is a Seattle-based writer and editor. She has worked for Newsweek's Tokyo bureau, the Puget Sound Business Journal, The Seattle Times, and Reuters. As an editor, she has helped launch two publications, including Washington Law & Politics magazine. She currently writes for the Seattle Cancer Care Alliance's Web site: www.seattlecca.org. Also see Jeanne's Diary online.

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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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  • Michelle Sloan 01/21/2009 11:47:00 AM

    In response to your question...."I've been working on this one for almost as long as I have had cancer, which is to say five years of trying to come up with an alternative to the clich? "battle with cancer," and I haven't found one yet. Help, anyone?" I have help for you! On not 'beating' cancer by Brian Doyle, Guest opinion Saturday January 17, 2009, 7:17 AM Brian Doyle Martial words reflect illusory mind-set against illness Finally, this morning, enough -- I read one too many journalistic references to someone's "beating" cancer, as if cancer was an opponent to be defeated, an enemy to be conquered, a battle in which courage often wins the day. It is a lie. Cancer is to be endured, that's all. The best you can hope for is to fend it off, like a savage dog, but cancer isn't defeated, it only retreats, is held at bay, retires, bides its time, changes form, regroups. It may well be that the boy who survives an early cancer lives a long and lovely life, without ever enduring that species of illness again, but the snarl of it never leaves his heart, and you'll never hear that boy say he defeated the dark force in his bones. Use real words. Real words matter. False words are lies. Lies sooner or later are crimes against the body or the soul. I know men, women and children who have cancer, had cancer, died from cancer, lived after their cancer retreated, and not one of them ever used military or sporting metaphors that I remember. All of them spoke of endurance, survival, the mad insistence of hope, the irrepressibility of grace, the love and affection and laughter and holy hands of their families and friends and churches and clans and tribes. All of them were utterly lacking in any sort of cockiness or arrogance; all of them developed a worn, ashen look born of pain and patience; and all of them spoke not of winning but of waiting. A great and awful lesson is contained there, it seems to me, something that speaks powerfully of human character and possibility. For all that we speak, as a culture and a people, of victory and defeat, of good and evil, of hero and coward, none of it is quite true. The truth is that the greatest victory is to endure with grace and humor, to stay in the game, to achieve humility. I know a young man with brain cancer. He's 16 years old. He isn't battling his cancer. He is enduring it with the most energy and creativity and patience he can muster. He says the first year he had cancer was awful because of the fear and vomiting and surgery and radiation and chemotherapy and utter exhaustion. But he says that first year was also wonderful because he learned to savor every moment of his days. He met amazing people he would never have met, and his family and friends rallied behind him with ferocious, relentless humor. He learned he was a deeper and stronger and more inventive and more patient soul than he had ever imagined. He also learned about fear, he says, because he was terrified, and remains so, but he learned that he can sometimes channel his fear and turn it into the energy he needs to raise money for cancer research. Since being diagnosed with cancer, he has helped raise nearly $100,000, which is remarkable. I met a tiny, frail nun once, in Australia, while walking along a harbor, and we got to talking. She said no one defeats cancer; cancer is a dance partner you don't want and don't like, but you have to dance, and either you die or the cancer fades back into the darkness at the other end of the ballroom. I never forgot what she said, and think she is right, and the words we use about cancers and wars matter more than we know. Maybe if we celebrate grace under duress rather than the illusion of total victory we will be less surprised and more prepared when illness and evil lurch into our lives, as they always will; and maybe we will be a braver and better people if we know we cannot obliterate such things, but only wield oceans of humor and patience and creativity against them. We have an untold supply of those extraordinary weapons, don't you think? Brian Doyle is the editor of Portland Magazine at the University of Portland, and the author most recently of "Thirsty for the Joy: Australian & American Voices."

 

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