Patients' Rights Powerhouse
Myra Christopher wages a personal battle with a rare cancer while continuing to passionately advocate for patients.
Story by Charlotte Huff & photos by Chad Jackson
Myra Christopher felt the mass in her lower abdomen prior to Thanksgiving 2010, but her schedule—as usual—was overflowing.
Besides a jammed work calendar, much of it to be spent on airplanes, the holidays were just around the corner: first Thanksgiving and then Christmas, then her older daughter’s 43rd birthday. Christopher, who relishes cooking up a storm with loved ones on any random night, particularly appreciates the festive pageantry of the holidays: the dishes, the linens, the flowers. “I love to wrap packages,” she says, chatting this spring in her Kansas City, Mo., office.
Detail minded, she’d marked Jan. 17, 2011, on her calendar as the day she would call her family doctor. She hadn’t mentioned the mass to Truman, her husband of more than 40 years. “He would have said, ‘We’re going to stop all of this nonsense,’ ” she acknowledges, now. But, as events unfolded, sudden and excruciating pain on the evening of Jan. 16 instead forced Christopher to the emergency room the next day. By that evening, doctors were rolling her into the operating room to remove a six-inch ovarian tumor.
By all accounts, Christopher has tackled her diagnosis and subsequent medical decisions with the level of intensity that she applies to her work at the Center for Practical Bioethics, which she helped launch in 1984. She served as its executive director and later as president for nearly three decades through 2011, and she continues her work there today. Since her mother’s death from cancer in 1978 at age 55, Christopher has championed the rights of patients to obtain better medical information and support as they wrestle with deciding which treatment paths are best for their personal situations and needs—whether those decisions involve an experimental protocol or a timely end-of-life discussion. She has scant patience, personally or professionally, for the sometimes convoluted and hierarchical medical system. “I won’t go to a doctor who won’t give me their cell phone number,” she says.
Treatment on Her Terms
That January, the 63-year-old expert in bioethics was the one lying in a hospital bed, reading reams of medical literature brought by friends and family. The physicians operating at Shawnee Mission Medical Center just outside of Kansas City had discovered a stage 1C tumor that had shifted painfully onto her spine. Sifting through the research studies, Christopher was determined not to be rushed as she weighed her treatment choices.
It was a rare type of ovarian cancer, called clear cell carcinoma, diagnosed in about 5 percent of women with ovarian cancer, according to a 2008 analysis of U.S. data. Although generally more aggressive than other ovarian cancers, clear cell carcinomas also tend to be caught a bit earlier, because they often grow into large masses that can be felt before metastasis occurs, says Michelle Dudzinski, Christopher’s gynecologic oncologist at Saint Luke’s Cancer Institute in Kansas City. (Nearly two-thirds of ovarian cancers aren’t diagnosed until they’ve metastasized beyond the lymph nodes; at that stage the five-year survival rate is 27 percent, according to National Cancer Institute data.)
Christopher’s tumor, which was attached to the endometrial wall, ruptured during surgery, filling the abdomen with potentially millions of malignant cells, Dudzinski says. It’s not an uncommon situation, says the physician, who took over Christopher’s care following surgery. Her abdomen was thoroughly rinsed with saline, Dudzinski says. “But you never know whether you got them all out or not.”
After mulling over the available research, Christopher agreed to chemotherapy, but decided early on that she did not want to get snagged by what she dubs “the treadmill” of repeated treatments. If the cancer recurred soon, within the first year after chemotherapy ended, she told Truman, she likely wouldn’t submit to additional cycles.
Christopher recounts a Kansas City Star obituary she stumbled across, profiling a woman with ovarian cancer who had lived eight years after being told she would survive only one. What struck Christopher was not the woman’s prolonged survival, but her protracted medical care. The woman had completed 90-plus chemotherapy cycles and at least half a dozen surgeries, recalls Christopher, who read the obituary to her husband.
“And I said, ‘That’s not me. This is not my life story. So, as we move through this, I just want you to remember this conversation.’ ”
She also spent considerable time choosing an oncologist, asking friends and family for suggestions before settling on Dudzinski. She preferred a female physician, and someone she “could be very direct with.” She also wanted a doctor who understood her twin passions: her work and her family, which includes two adult daughters and a grandson.
“Myra has real concerns,” her husband adds, “about physicians who don’t really tell the patients what’s wrong with them, who are not really honest with them about what their prognosis is and what their options are.”
Christopher had quickly dispatched the first oncologist who walked into her hospital room. “This kid came in,” she says. “And he said, ‘I’m your oncologist.’ And I said, ‘You know what, darling. I’m sure you’re an oncologist. But you’re not my oncologist.’ ”
A Fighter For Patients' Rights
Christopher’s interest in ethics, pain relief and end-of-life care dates back to her mother’s diagnosis with esophageal and stomach cancer in 1976. Christopher, just 28 at the time, first advocated for aggressive treatment, including an experimental surgery and chemotherapy. Two years later, after the cancer progressed, Christopher nursed her through her final weeks, at a time when hospice care was more concept than reality.