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- December 06, 2004
- Vol. 62
- No. 23
Brand of Sisters
All Five Kimball Women Carry a Gene that Puts Them at Risk for Breast Cancer. Together They're Fighting Back
Few people understand that cruel reality more intimately than the Kimballs. They have spent the past decade on a terrifying medical odyssey. From their father, Don, 64, a car dealer, all five women have inherited a mutated gene called BRCAI, otherwise known as the breast cancer gene. So far, three have contracted the disease; the others watch and wait, knowing that experts say women with this genetic legacy have up to an 85 percent chance of developing breast cancer—almost seven times the normal rate—and often at an unusually young age.
The breast cancer gene affects only fewer than one tenth of breast cancer patients—and the odds that five daughters in the same family would inherit it are as small as I in 1,000. But in the case of the Kimballs, that's exactly what happened. "You're talking about a very, very unusual family," says Brian Ward, lab director at Myriad Genetics Laboratories, which tests for the gene. "It's just really bad luck," adds the sisters' oncologist Eric Winer of Boston's Dana-Farber Cancer Institute.
Bad luck in so many ways. Kristy, Wendi and Cindy have all had cancer discovered in one breast and made the choice to have both of their breasts removed. Since the BRCA gene mutation is also a strong indicator of future ovarian cancer, all three women have also had their ovaries removed, which cuts that risk by 75 percent. "I still feel feminine, but that really hit me," says Cindy, who lives on Washington's Anderson Island with her husband, Scott, and two stepdaughters. "I'll never be able to have biological children." Though cancer free so far, another sister, Tammy, plans to have a double mastectomy next year, which is 90 percent effective in preventing cancer, just to be safe. "It's part of my womanhood, and if s not going to be there anymore," she says. But consider the choice: Her kids Anne-Christian, 12, and Marshall, 11, have already asked if she's going to die. "They're the most important thing in my life. I want to be here for them."
Fear, pain, hair loss and ruptured relationships—the sisters have met it all with spirit and humor. And as a family. Scattered geographically, the Kimballs have drawn closer. They speak more often than ever and buoy their spirits by staying proactive, immersing themselves in the latest research and exchanging articles about new therapies and surgeries. They've also been inspired to activism and have just set up the Kimball Family Foundation, an organization to educate women about genetic testing and raise money for women who cannot otherwise afford the up to $3,000 cost. "Families with young children have Ronald McDonald Houses, but what happens to girls in their 20s and 30s?" says their mom, Shelby, 61.
The sisters' father, Don, knows the answer to that: "Your world changes on a dime. Boom. Never, ever been the same."
He and Shelby started their family in pursuit of the usual dreams. High school sweethearts from Syracuse, NY, they wed in 1961—he was 21, she was 18. Their girls grew up bright and athletic, each assuming her role in the tight-knit pack. "Tammy always looked out for me," says Jennifer. "Kristy was the practical joker"—she liked to put bugs under people's pillows—"and Wendi was the oldest, the protector."
But in April 1994 their troubles began: Cindy, then 30 and teaching English on Okinawa, where her husband was an Army staff sergeant, felt a lump during a self-exam. She wasn't overly concerned until a biopsy proved it malignant. "When they told me I had cancer, I remember just crying uncontrollably," she says. "Here I am, healthy, active, running, walking, eating sushi. I was like, 'Me?' "
Her family was just as shocked. "I couldn't even talk," says Don. "Cindy's our hippie chick," adds Wendi, "very health conscious, tall, thin and gorgeous." Kristy, living in Skaneateles, NY, worried about her own health. In fact, all four began getting annual mammograms, though they were years away from the baseline age of 40. Cindy moved to North Carolina for treatment at Duke University, where her oncologist ordered five months of exhausting chemo and radiation. She lost her hair, but not her joie de vivre. She would just sleep for a couple of days," says Tammy. "Then she'd regain her strength and pop right back up."
But there were setbacks. Cindy moved to Washington, where her husband was now stationed, but the strains of her illness contributed to the end of their marriage in 1997. Later that year at a church dance, she met Scott Collins, a divorced carpenter with two daughters. Cindy warily told him of her cancer; his reaction passed the test. "I said, T don't care about the parts; it's the person,' " recalls Collins, 40, now a nurse. Three weeks later they were engaged; they married in 1998.
That Christmas Kristy made her own discovery: a small lump on her left breast. "The doctor said the lump looked pink and healthy and there was a 99.9 percent chance it was nothing," she says. "I was like, 'Cool!' " But a week later a biopsy proved it was malignant. "I was like, 'Holy s..., I have cancer!' " says Kristy, who by then had a 3-year-old son, Christian, with her now ex-boyfriend. Her family struggled to understand how two sisters could have been stricken. "Was it a weird coincidence? That was the scariest time, not knowing," says Jennifer. "What were they exposed to?" Shelby recalls thinking. "Was it in the water? Was it chemicals? Did I feed them something I shouldn't have? I felt guilty."
Kristy went for a radical treatment, removing both breasts. Vanity, she admits, informed her decision "Here I am, 33, and am I going to have an implant and one droopy breast from breast feeding?" she recalls thinking. Before her surgery in Boston, she made a video for Christian. In it she sang, read aloud and talked him through his bedtime routine. "He'd intently watch her face on the screen," recalls Wendi, a former teacher's assistant who was taking care of the boy in Jacksonville, Fla., where she lives with husband Chuck Hollis, their son Jonathan, now 21, and daughter Jordan, 15. "One night, when she said, 'Remember to brush your teeth' [on the tape], he said, 'We already did!' We were all boo-hooing."
Kristy opted for reconstructive surgery on the day of her mastectomy. When the bandages came off, "it was horrible," she says. "I thought, 'Thank God I'm alive, but they don't even look like breasts.' I just didn't feel whole, you know?"
Chemo and more cosmetic surgery, including the excruciating process of stretching her skin over the implants, followed. "Kristy was very sick-the worst of all of them," says Shelby. "She'd be constantly throwing up. One day she was sitting in the Boston airport saying the rosary. My heart was just breaking." By the end of 1999, she had recovered significantly and returned to work as a nurse at a Florida branch of the Mayo Clinic. Then in the fall of 2001 it was Wendi's turn. "I was reading in bed, my favorite author, Patricia Cornwell," she says. "At the very edge of my right breast, my fingers brushed this hard, peanut-sized lump. And I knew." Now, she adds, the family was feeling cursed. "One sister is horrible. Two is devastating. Three is like, 'What the hell's going on?' "
In September 2002 Wendi, then 40, and Cindy had mastectomies. By then, Dr. Winer suggested all the Kimball women test for the cancer gene. "We knew something was up," he says. Kristy, Cindy and Wendi had tests: All three came back positive. But Shelby's results were negative—meaning Don was the carrier. "I know he's absolutely devastated," says Kristy. "I reassure my dad every day that I love him." Shelby was relieved by the result, at least initially. "At last we knew where it was coming from," she says. "But then it was like, 'Ohmigod, my other girls!' "
To stave off ovarian cancer, the afflicted sisters also had complete hysterectomies and their ovaries removed-which threw them into menopause at the same time as their then-59-year-old mother. As for Tammy and Jennifer, they also tested positive for the BRCAI gene mutation. So far, they're cancer free and, with luck, may stay that way. Former retail buyer Jennifer, who in July wed David Klarner, treasurer of a medical supply firm, is focused on trying to have a family before any illness strikes. "We don't have a lot of time," she says. Tammy, who lives in Wilmington, N.C., with her husband, Steve Bizzo, is preparing for her mastectomy.
Meanwhile, Cindy and Kristy have passed the magic five-year mark without recurrence. "My doctor actually used the cure word-it felt awesome," Kristy says. Now the sisters hope that, through their foundation, their singular ordeal—one that they will continue to face together—will serve a larger good. "Maybe all this happened for a reason," says Wendi. "Maybe we can make it less scary, put a human face on it. Maybe we can show that cancer isn't a death sentence."
Richard Jerome. Macon Morehouse in Ponte Vedra Beach
- Macon Morehouse.
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