Distinguished as much by her empathy as by her proficiency as a surgeon, Dr. Carolyn M. Kaelin would often hold a breast cancer patient’s hand as they sat side-by-side, both crying as they discussed a devastating prognosis. “My practice sees a disproportionate number of young healthy women with breast cancer,” she told the Globe in 1999. “I see myself in many of these women.”
Then in 2003, she took off a cycling shirt after training for the Pan-Mass Challenge and noticed “this tiny pulling in of the skin,” a flaw only a top surgeon might see. In that moment she crossed the doctor-patient divide in her own specialty. Diagnosed with breast cancer at 42, she began to infuse her work with a patient’s perspective, cowriting two books and studying how exercise affects the lives of those who, like her, were walking the path of illness and treatment, as she underwent multiple surgeries.
Five years ago, she was diagnosed with brain cancer. She had to learn to walk again — twice — after separate operations on the new tumor.
Dr. Kaelin, who lived in the Back Bay, was 54 when she died Tuesday in an apartment she and her husband rented in Charlestown, partly for the soothing water view, and also to keep their home emotionally intact for their two children.
Her death is a loss for her many patients and colleagues, said Dr. Eric Winer, director of Dana-Farber Cancer Institute’s breast cancer program, who was her friend and her doctor. And because of Dr. Kaelin’s research, writing, and role as an inspirational figure, he added, “it’s a loss that ultimately has implications for people well beyond the walls of our institution.”
Twenty years ago, when Dr. Kaelin became the founding director of the Comprehensive Breast Health Center at Brigham and Women’s Hospital, she was the youngest woman to hold a position of that distinction at a major Harvard University teaching hospital, and the youngest of several female surgeons in Greater Boston to lead such a center.
Because those accomplishments drew attention and honors, “there’s a human side of her that sometimes gets left out, that I think is really important,” said Dr. Michael Zinner, who is chief of surgery at Brigham and Women’s and hired Dr. Kaelin. “She was loved by her patients,” he said, adding that she would tell him about taking calls from and making calls to patients as late as at 10 p.m., all while raising two young children with her husband, a high-level cancer researcher. “She was able to do all that with incredible grace,” Zinner said.
Dr. Kaelin told the Globe in 1999 that she was drawn to her specialty partly by “the aspect of being a family practitioner: You really see the patients long-term. Unlike repairing somebody’s hernia or removing a gallbladder and then seeing the patient one more time for a post-op check, with a breast cancer patient, once you care for them, you care for them for life.”
Nevertheless, she added, “it’s really hard – you get to know these patients and their families and you become emotionally attached to them. . . . There are days where we’re calling back patient after patient with not very good news from their biopsies.” If a prognosis was particularly poor, she would explain that “at least they may have some time, and can choose to use that time however they wish.”
A rare complication in her cancer treatment muted sensation in Dr. Kaelin’s fingers, so she set aside surgery and used her remaining time to concentrate on patient education and research, and to be a stay-at-home mother.
In 2005, she published “Living Through Breast Cancer,” followed two years later by “The Breast Cancer Survivor’s Fitness Plan.” Along with providing comprehensive information and suggestions, the books featured the names of her cowriters on the cover – at Dr. Kaelin’s request. “She became a hero in the world of ghostwriters,” said her husband, Dr. William G. Kaelin Jr., the Howard Hughes Medical Institute investigator at Dana-Farber and a Harvard Medical School professor.
Her insistence on fair treatment for writing collaborators mirrored her approach to healing patients. “The thing that stands out to me more than anything else is that she absolutely insisted on every patient getting everything they possibly could get in terms of the care we could provide, and in a timely fashion,” Winer said. “This was true if it was the wife of a well-known politician and it was true if the patient was the sister-in-law of the cousin of someone who worked in the cafeteria. Once you became one of Carolyn’s patients, you became part of her extended family.”
Born in Syracuse, N.Y., Carolyn Mary Scerbo grew up in Franklin Lakes, N.J. Her father, Richard Scerbo, worked in pharmaceutical advertising, and her mother, the former Mary Zebrowski, was a schoolteacher and interior designer.
She majored in economics and biochemistry at Smith College and graduated from the Johns Hopkins University School of Medicine in Baltimore, where she met Bill Kaelin, a chief resident, when both were swimming in a pool across the street from the school. They married in 1988. “In addition to the fact that she was beautiful there was her intellect and her smile,” he recalled. “She had a wonderful, wonderful sense of humor, a wonderful laugh.”
He added that she “was always fearless and never backed away from any challenge in her life,” a trait that served her well as she faced sexism while training to be a surgeon, and was just as important when she endured cancer diagnoses, surgeries, and chemotherapy. “Knowledge, strength, and grace would define Carolyn,” he said. “She was poised, she was graceful.”
The dozen years that passed after the first diagnosis allowed Dr. Kaelin to spend more time with her daughter, Kathryn Grace, and her son, Tripp. “She got to see her daughter graduate from Yale, to see her son enroll at Yale, to celebrate our 25th anniversary,” said her husband, who added that together, they also learned lessons a terminal illness can teach.
“Life’s much richer,” he said, “when you don’t take it for granted.”
In addition to her husband, daughter, and son, Dr. Kaelin leaves her parents and her brother, Richard Scerbo, all of Boston.
A memorial service will be held at 4 p.m. Aug. 28 in St. Ignatius Church in Chestnut Hill.
Those who attend the service for Dr. Kaelin, a frequent participant in the Pan-Mass Challenge cancer research fund-raiser, are invited to wear a touch of pink.
Dr. Kaelin, who had a master’s from Harvard School of Public Health, was prompted by her own experience to pay closer attention to treatment symptoms physicians often ignore because while disruptive, they’re not life-threatening. “If anyone ever says, ‘I have a metal taste in my mouth,’ that’s really going to ring a bell with me,” she in 2003, chewing Trident cinnamon gum to ease that chemotherapy side-effect.
In her first book, she wrote that while she had “come to accept that breast cancer will forever be a part of my being,” time spent on the Pan-Mass Challenge, with friends, and especially with family formed the important memories. “For most hours of most days, breast cancer is nowhere near the front of my mind,” she said. “Life at that moment in time, or planning for the future, is.”