Women Cancer Survivors Take Charge

A new generation of women shake up what it means to have cancer.

From the WebMD Archives

Instead of sporting bandanas and faux-looking wigs, today's crop of female cancer patients are covering their heads with black wool hats that brazenly say "F--K CANCER" or simply not covering their heads at all.

These patients are bold, bright, and brash -- and they’re taking cancer by storm. In the process, they’re changing the way we talk about, deal with, live with, and triumph over cancer.

And you need to get to know them, because they can teach us all a lot about living. Since their diagnoses, these women have fallen in love, had children, made movies, written books, started support organizations, and raised money (not to mention awareness) for their cancers.

Two high-profile survivors are setting the trend. Elizabeth Edwards, the wife of presidential candidate John Edwards, is out campaigning with and vehemently defending her husband as she manages an incurable cancer. Robin Roberts, the co-host of ABC's Good Morning America, is continuing to work while undergoing chemotherapy for breast cancer.

"It is a very positive and very new image of a cancer survivor who is interested in talking about cancer and living the best lives they can," says Terri Ades, MS, APRN-BC, AOCN, director of cancer information at the American Cancer Society in Atlanta. And there are lots of them. "There are more cancer survivors today than there have been in the past, and by 2020, the number of survivors will double."

Crazy, Sexy Survivors

Meet Kris Carr, the director and producer of The Learning Channel's documentary film Crazy Sexy Cancer and author of the book Crazy Sexy CancerTips.

"The new face of cancer is people living with disease, managing it, and in some ways making a better life as a result of it," she says. "Truthfully, cancer isn’t sexy. But the women who have it are," she says. "They are whole and passionate, with or without the disease."

She knows of what she speaks. Carr, an actress, was diagnosed with incurable epithelioid hemangioendothelioma, an extremely rare vascular cancer that affected her lungs and liver in 2003, when she was just 31 years old.

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"I was petrified at first," she recalls. "It was my ‘needle off the record’ moment." But she turned her fear into action. She founded a corporation called “Save My Ass Technologies, Inc." and began to film a documentary of her search for a cure.

For starters, Carr interviewed potential doctors the same way she’d interview a potential employee. She learned a lot along the way.

"If your doctor has the bedside manner of Dog the Bounty Hunter, it might not be a good partnership," she says. "Look for the person who knows the most."

Don’t let the white coat intimidate you, she says. "Everyone has gut feelings and intuition, and doctors can intimidate you into not using it."

Carr's search for a cure also involved a foray into the sometimes wacky world of complementary medicine.

"If Western medicine doesn't have answers or answers that you like, look elsewhere," she says. "Complementary medicine can give a patient a really empowering feeling," she says.

"Cancer is bigger than a cell count or a tumor," she says. "There won’t be a cure without both members of the team playing together,” Carr says of the marriage between Western medicine and complementary medicine, which includes everything from herbs and yoga to acupuncture and diet.

She also learned that it can be challenging to prove to others that you are OK, she says. "I still get people that say, 'Bless you dear heart, keep up the fight' when I come out and do book signings," she says. "It's never a patient who makes me feel terminal. I often think, 'Did you just miss the whole point? I am more alive than you are.'”

But Carr is not totally fearless. "I learned to manage fear and not allow it to take me down," she says. "If I get scared, it usually means that I am out of balance in another area," Carr says. "Is a cough just a cough? You can become so debilitated and fall into hypochondria, and when I get to those places I know it’s time to do something as simple as go for a walk and change the environment."

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So far, so good. "I feel fantastic and am about to go for a run in the mountains," she says. In the course of making the documentary, Carr met and married her husband, who served as the editor and producer on the film. "The film ends with me living with cancer and getting married and planning for the future," she says. And that's not all. "I am writing another book and raising money for the Crazy Sexy Scholarship Fund, which provides money for alternative medicine.

"Cancer is a catalyst, and if you let it, it can bring some amazing things into your life," says Carr. "Cancer tells you it’s time to live, not time to die."

Crazy, Sexy Cancer Survivor: Roberta Levy Schwartz

Houston-based Roberta Levy Schwartz, a founder of the Young Survival Coalition, was diagnosed with breast cancer at age 27. Now, 10 years later, she remains cancer-free and is the mother of three children.

A lot has changed on her watch.

"When I was in the waiting room when first diagnosed, people always thought it was my mother who had cancer, not me," she recalls. "The staff would usher me back quickly, because it freaked people out to have a 20-year-old in the waiting room. And now, just about everyone knows a young person with cancer."

Times have changed. "We are young; we are proud; and we are going to be here next year, and we are going to take our wigs off," she says. And one more thing: "Don't tell us about stats, as we have every intention of living."

Schwartz' organization, the Young Survival Coalition, aims to address many of the unique issues faced by young women with breast cancer. Its other goal is to bring survivors together. There was no such group when Schwartz was diagnosed with breast cancer.

Her best advice to the newly diagnosed is simple.

"Just live," she tells WebMD. "You can’t worry about whether or not tomorrow will be your last day." she says. "It's not about how long you live; it's about how you live. Being depressed at home in the closet because you don't want people to see you is not being alive," she says.

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Crazy, Sexy Cancer Survivor: Alayna Kassan

At the age of 27, New Yorker Alayna Kassan was diagnosed with Hodgkin's disease. "In a way, the diagnosis came as a relief, as I had been feeling sick for so long and nobody could figure out why. It was good to finally know what was wrong so that we could do something about it," she recalls.

Grueling chemotherapy followed by radiation forced Kassan to re-evaluate her life and make some changes that had been a long time coming. "Cancer was definitely a catalyst for me," she says. "I quit my job as an attorney and took a few weeks off and went skiing, which was something I always wanted to do," she tells WebMD.

Shortly thereafter, she started a company called Presents for Purpose with a fellow Hodgkin's survivor. "I wanted to give back to the community that helped me, so I started a gift company where a percentage of the proceeds benefit charitable organizations, including the Lymphoma Research Foundation."

To date, the company has raised hundreds of thousands of dollars for a growing list of charities, including the American Red Cross, Y-Me National Breast Cancer Organization, CancerCare, First Book, First Candle, the Lymphoma Research Foundation, and the Leukemia and Lymphoma Society.

But that's not all. In a way, cancer served as cupid for Kassan. "After getting diagnosed with cancer at a such a young age, I was more attuned to my health," she tells WebMD.

"I had hit my head playing soccer, and when the pain didn’t abate after a few weeks, I was concerned," she recalls. So she went to the emergency room. "The doctor was fairly sure it was nothing serious, just a bruise," she says. This doctor is now her husband, and the two are expecting twins. "Nobody wants cancer, but the experience definitely changed my life for the better," she says.

WebMD Feature Reviewed by Louise Chang, MD on September 28, 2007

Sources

SOURCES:Terri Ades, MS, APRN-BC, AOCN, director, cancer information, American Cancer Society, Atlanta,. Kris Carr, director and producer, Crazy Sexy Cancer; author, Crazy Sexy Cancer Tips. Roberta Levy Schwartz, founder, Young Survival Coalition, Houston. Alayna Kassan, founder, Presents for Purpose.

© 2007 WebMD, Inc. All rights reserved.

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