NEWS about Dead Girl Walking

Seeking answers: Back home in Kitty Hawk, as she grew stronger, Marcy returned to her life with an almost frantic, last-chance feeling. Between doctor's appointments and going to church and volunteering for the American Cancer Society, she tried to do as much as she could: She took Linda to Paris and Languedoc and Provence, lay naked on the beach at St. Barth's with Judi, skied in Utah, snorkeled in the Bahamas, dug for dinosaur bones in South Dakota. And she decided to find out about her future. She had been thinking about genetic testing for a long time; she thought about her mom dying of cancer, about herself, about her sisters and niece. Charlotte had had her ovaries removed earlier in life, so the family wasn't sure where her cancer originated. But doctors suspected it was primary peritoneal carcinomatosis, which is similar to ovarian cancer. Marcy wanted to know if cancer ran in the family. So she had her blood drawn for genetic testing. The scientists would extract her DNA, then search for mutations in the two genes known to influence breast and ovarian cancer. In October, a year after her stem-cell transplant, having passed her six-week checkup and her three-month checkup and her six-month checkup and her nine-month checkup, Marcy drove back from Duke through the small towns and the swamps and over the bridges to the Outer Banks, past the surf shops and the friendly old guard at the entrance to her neighborhood and the little pond on Martin's Point and up the driveway to her big, sunshiny yellow house. She was still cancer-free, and she didn't have to go back to Duke for a year. She walked out to her big weathered deck, looking out over the water, the pine trees, the big houses with verandas on the distant shore, and held it, savoring it, and thought: What do I want to do this year? "I felt extremely fragile. And grateful. And expectant ... that I am going to get better. Have a normal life. ... And I thought, 'I want my whole life to be about music. And I want to fall in love.' " A few weeks later, she got her genetic results. She tested positive for not just one but two altered genes. When her doctor told her, she said, "Is that rare?" and he paused. So far, she was only the 10th such case report. Doctors estimate that someone who has one mutation has a 56 percent to 85 percent chance of getting cancer. Mutations in both genes linked to breast and ovarian cancer is so rare that they don't know the odds. "I'm a genetic train wreck," Marcy said. She immediately thought of her sisters and her niece. Since she had genetic mutations, other relatives might have inherited a higher risk of cancer, too. Suddenly it wasn't just her health, her body. Suddenly it was in the family. In a strange way, she wasn't the only sick one anymore. The test results weren't as hard for Marcy as the news that she had cancer. But they made it harder to leave the disease behind, to shake off the sense of dread. The results meant she needed more frequent checkups to make sure the cancer hadn't returned. In a weird way, though, the information made her feel better. She'd always tried to be healthy, working out and eating well, but she kept remembering the cigarettes she'd smoked, the drugs she'd tried as a teenager, all the little things that could have made her weaker. In the end, it wasn't in her control. "My cells are just trying to create breast and ovarian cancer," she said. The results, ultimately, were freeing. Bit by bit, she was learning to let go, to have faith. ### Living to the fullest: Marcy has stuck bumper stickers like "TRUST LOVE" on the door of her downstairs office, funny pictures and magnetic poems on her refrigerator. She bought a sculpture of the mythical Three Graces for an alcove in her living room because the three women, their arms intertwined, reminded her of her sisters. She's the one in the middle, the other two reaching out to her, taking care of her. Cancer is always there, in her mind. "Sometimes I feel like dead girl walking," she said. But more and more often, she shakes off the sense of genetic doom. Her family and her faith give her strength. The cancer brought terror but also insights and unexpected joy. It reminds her of when she was little, when everything was magic. "The leaf petals, the ice-cream man, the jingle of my dad's change in his white bakery pants ... to trust, to have a childlike expectation that the love would always be there. ... I think I'm more alive now than most people." She found someone to play guitar with, Lou Castro, a 36-year-old guy with a long black ponytail and a big, loving family and a beat-up Volkswagen and as much kindness as her father. She told Lou about the cancer, that chances are, it will come back. "He said, 'I would rather love you for five minutes than not at all,' " Marcy said, letting the words float. Now, after a winter together, they're busy creating who they want to be, designing a logo for their band, recording demo tapes, dreaming of the future. They're talking about marriage and adopting children. She can't have children because of the chemo, but she doesn't think she'd want to risk passing on the gene mutations, anyway. Downstairs in her cozy music room late one night this spring, Marcy set up a low wooden music stand, pulled down a steel-string acoustic guitar from a wall of gleaming instruments and flipped through music while Lou plugged in equipment. "Check, check," he said, the booming mike making Grace and a new beagle, Boots, jump. In her yellow T-shirt and loose polka-dotted pants, her graying brown, corkscrew curls coming back, Marcy started singing softly. Lou's guitar sounded strong and sure, and as he played she gained confidence, her voice swelling. They played, questioned, tried again, scooped up beagles chewing on things, reached for icy currant-vodka tonics, switched instruments, tapped feet, changed keys, night wearing into morning as the metronome ticked on. As another song trailed off, Lou started strumming the opening notes of a slow, sad song. Marcy smiled, recognizing it, grabbed another guitar and sang. "On and on the rain will fall. Like tears from a star, like tears from a star." Boots wandered over and snuffed, then set to gnawing on a set of African drums. Marcy pushed him gently away, trying not to giggle. "On and on the rain will say," she sang, her voice dropping almost to a whisper. Behind her, Boots turned to the mirror, saw a strange beagle and woofed ferociously. Marcy threw her head back and laughed with Lou, eyes closed, shaking, then looked up to finish the song half laughing, half singing. "How fragile we are, how fragile we are." Every six months, Marcy has to go back to Duke for a CAT scan, a bone scan, blood tests to see whether the cancer has returned. "I live my life in the chunks between tests," she says. "That's the only time I have freedom. The day I have the tests is the day I prepare for my life to change." For it to end. She's not sure, if the cancer came back, that she would choose to go through treatment again. Earlier this year, she waited for her sisters' genetic test results not with dread but with hope. Testing was a way for her to see her own disease and her mother's death as a sacrifice, a warning sign for them. She wants to take care of them. "It's too late for me," she said. "It's not too late for them." ### Coming Monday in Life, etc. After learning her sister's results, Judi Coyne agrees to her own genetic testing and faces a cloud of choices, statistics and what-ifs.

They didn't talk about it the week before Christine Morgan got her results. Christine was her normal calm and cheerful self, except that every now and then she would think, "Ohhhhhhh, Friday ... " Her husband, Clint, just pushed it out of his head. Even on the drive to Duke University Medical Center, after leaving their 21-month-old son Chase with Christine's mother in Cary, they just talked about the traffic, plans for the weekend, funny things Chase had done at their Johnston County home. Christine, who pulls her dark curly hair back in a barrette and wears little silver glasses, braced for positive results. Not only had her mother tested positive the month before, not only had a young relative just been diagnosed with breast cancer, but she'd found out more about her father's side of the family. He was of Ashkenazi Jewish descent, like her mother, a blood line that carries a far higher risk of having a mutation, and there were a lot more cases of cancer on his side of the family than she had ever known. Clint didn't think about it until they were sitting in genetic counselor Shelly Clark's office earlier this month and he saw the manila folder with the results. It was like holding the envelope with the results of his engineering exam, or the moment just before he asked Christine to marry him: His life was about to change. All the thoughts he'd been pushing away that month rushed in. He thought of her life becoming like her Aunt Marcy's, getting cancer young, beating it off, then having to battle it again. He thought of his wife sick, thought of doctors sending her home to die. He thought of their little blond son left without a mother. He thought of how it might change their plans to have more children. As an engineer, he usually has control of information, so to start thinking of so many unknowns was terrifying. But then Shelly stopped explaining the tests, smiled and said she had really good news. Christine had tested negative for the gene mutations. Christine felt suddenly light. Clint couldn't say anything. He was trying to choke back tears. Christine was calm. She thought about herself first, that she wouldn't have cancer hanging over her head for the rest of her life. She didn't have to wonder about taking birth-control pills or about having more children. Then she thought of her mom, Linda Brenner-David, that Linda wouldn't have to worry about her and could concentrate on taking care of herself. And then she thought of Chase, that he wouldn't have the mutations because she didn't -- another good feeling. "I've never been so happy to be average!" she said, laughing. " ... Now I'm just a regular person." They talked with Shelly, and with one another on the drive back to Cary, about what the results meant. A lot of smiling, and silence, too. At her parents' house, they walked around to the back deck where Linda was playing with Chase, who lit up when he saw them. That's when it really hit Clint what it all meant. Christine felt a little hesitant about telling her mom. "I worried about her being in that boat alone." But her mom was delighted; she hugged her, and her husband, Geoff David, kept telling Christine how glad he was. Christine called Marcy, Judi and her grandfather right away. Marcy cheered, and asked when they would have another baby. Geoff started hamburgers on the grill. After dinner, as the day cooled off, Geoff and Clint got out a fishing rod and showed Chase how to fish at the little pond behind their house, pointed to ducks and geese and turtles. Linda and Christine sat on the deck talking, and Christine took pictures of Chase. "It was a celebration of the simple things in life," Clint said, "that all of a sudden you enjoy just a little bit more." ### Earlier this month, The News & Observer published a series of stories about the three Brenner sisters, who had genetic tests done to find out whether they had inherited mutations in the genes linked to breast and ovarian cancer. Testing positive would mean they had a dramatically higher risk for the disease. They decided to get the tests after their mother died of cancer and the youngest sister, Marcy Brenner, fought off advanced breast cancer. Marcy was tested first, and the results were rare and alarming: She had mutations in not just one but both genes. Judi Coyne was tested next: She found out she had inherited neither mutation. Then Linda Brenner-David discovered she'd tested positive for one of the mutations. Knowing her mother might have passed along the mutation to her, Linda's 30-year-old daughter, Christine Morgan, had her blood drawn for testing. Here is the epilogue to the Brenners' story. To see previous stories in this series, please go to www.newsobserver.com/gene ### Information: You can find local genetic counselors specializing in cancer at: - Duke University Medical Center: Shelly Clark, 684-3181, clark086@@mc.duke.edu. - UNC Hospitals and Rex Healthcare: Cecile Skrzynia, 966-9437, rcnp@@med.unc.edu. To learn more about genetic testing and cancer: - The Breast Cancer Resource Directory of North Carolina is a more than 250-page book that covers everything from diagnosis and treatment options to genetic testing and support groups. It's free. Call (800) 514-4860 or (919) 966-9834, send e-mail to bcresources@@med.unc.edu or request a copy through the Web site, bcresources.med.unc.edu. - The National Institutes of Health: Understanding Genetic Testing at newscenter.cancer.gov/sciencebehind/genetesting/genetesting01.htm - The Department of Energy Office of Science: www.ornl.gov/hgmis/medicine/genetest.html - The National Cancer Institute: cis.nci.nih.gov/fact/3_62.htm; (800) 4CANCER (422-6237). ### Help with the cost: The Aegis Initiative, a new nonprofit organization based in Carrboro, will help pay for genetic testing for some high-risk, low-income people in North Carolina. People who are referred by an oncologist, have a family history of cancer and meet certain financial requirements can apply to have the more than $2,500 cost of the initial test covered. For more information: info@@aegisinitiative.org; www.aegisinitiative.org.