"My patients said to me, 'Now you're seeing this from both sides of the stethoscope--no one knows better than you all the ramifications of treatment,'" says Kaelin, 44, who wrote the book with medical reporter Francesca Coltrera. "It's my patients who urged me to put pen to paper--to make this impact."
Kaelin's commitment to educating the public about breast cancer began long before her diagnosis, in mid-2003, when she got the first clue that something was wrong--an odd dimpling of the skin on one of her breasts. In 1996, at 34, she was named director of the new Comprehensive Breast Health Center at Boston's Brigham and Women's Hospital. Working 16-hour days, this mother of two upped the program's breast-surgeon count from one (herself) to eight; by 2003, the Center was seeing twice as many women requesting surgery for new breast cancers as any other site in Massachusetts.
And in 2002, with funding she received from the Brigham's Mary Horrigan Connors Award for outstanding contributions to women's health and from Reebok University, Kaelin teamed up with Reebok master trainers Josie Gardiner and Joy Prouty to make The Breast Cancer Survivor's Guide to Fitness, a four-hour instructional DVD. The video highlights the benefits of strength and endurance training: offsetting osteoporosis, minimizing fatigue, and hopefully improving long-term survival through weight control by converting fat to muscle--a process that may reduce the amount of estrogen in the body, as estrogen is made not just in the ovaries but also in fat cells.
"We can begin a physical-activity program when treatment ends," Kaelin says with characteristic sanguinity, "but, ideally, we start the moment we're diagnosed."
Her own 18-month journey to health is a testament to that philo-sophy. Through multiple surgeries (including a mastectomy and breast reconstruction), chemotherapy, and hormone therapy, she made exercise--walking and lifting light weights--a priority.
patients help themselves
Josie Gardiner sees Kaelin's exercise advocacy as vital to advancing fitness as a cornerstone of health. "The reason 83 percent of the population doesn't exercise isn't because they're lazy," says Gardiner. "It's that they have no idea what to do. Our fitness industry develops programs that make the fit fitter rather than focusing on those who truly need help. Carolyn is committed to addressing those people."
Kaelin was drawn to helping the underserved early on. At Smith College, she devised her own major: medical economics of Third World countries. Following medical school at Johns Hopkins and serving as chief surgical resident at New England Medical Center, she became a surgical oncologist at Dana-Farber Cancer Institute, in Boston, and what is now Beth Israel Deaconess Medical Center. To sharpen her skills in research-protocol and trial design, she enrolled in the Program in Clinical Effectiveness at HSPH in 2000. The program also helped her apply multidisciplinary management principles to oncology, a diced-up world where every step of treatment is guided by a specialist, from surgeon to medical oncologist, radiologist to physical therapist.
"Carolyn has always had keen interest in getting information to patients about preserving health and preventing disease," says HMS Professor of Medicine Anthony Komaroff, the HSPH program's co-creator and editor-in-chief at Harvard Health Publications, which teamed with McGraw-Hill to publish Kaelin's book. "She passionately believes that the power to improve health depends on educating the public."
Chris Carmichael, coach of cancer-survivor and cyclist Lance Armstrong, concurs. Honorary co-chair with Kaelin of the Komen Aspen Ride for the Cure, Carmichael applauds her pro-active stance. "Like Lance, Carolyn sets an example with her perseverance," he says. "Her accomplishments inspire patients as well as survivors who are looking for guidance in moving forward with their lives."
Kaelin's research, too, focuses on motivating patients to help themselves. For example, in 2003 she launched a study of breast cancer survivors who row. Historically, women whose underarm lymph nodes have been removed have been told to limit use of the affected arm to prevent a painful condition called lymphedema, in which lymph fluid builds up in the fat tissues. But Kaelin's patient-athletes were telling her differently: Rowing didn't hurt--it helped them, physically and psychologically. Kaelin is testing this contention by comparing survivors' arm symptoms, circumference, grip strength, and range of motion with those of healthy novice rowers.
"My own experience has been both unusual and common," says Kaelin. "It's not typical to have three discrete tumors, as I did, and it's rare for a tumor to be visible in the skin, as mine was. That said, my breast cancer odyssey has included surgery, chemotherapy, hormonal therapy, and recovery. Perhaps for these reasons, I feel particularly well equipped to answer most questions a patient might ask."
Thea Singer is a senior writer for the Review within HSPH's Office of Resource Development.
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