Jun 16, 2014
By Jo Cavallo
“If I can’t find relief from this pain,” said Selma, “I don’t want to live like this.” Selma died on May 21, 2014, from malignant psoas syndrome, a complication of her ovarian cancer, at Providence Tarzana Medical Center, near her home in Los Angeles. She was 59.
Refusing to surrender to cancer
I met Selma a year ago, first through email and then over the phone. She wanted to go public with the fact that she had advanced ovarian cancer—a disease that took the lives of both her mother and maternal grandmother while they, too, were in their 50s—because, she said, she felt an obligation to help other cancer survivors as well as physicians understand that transitioning to palliative care did not mean surrendering to cancer. She also wanted to stress the importance of introducing the subject of palliative care into standard cancer care early on, soon after the initial diagnosis, and definitely integrating the two practices once a patient is diagnosed with metastatic disease.
“If I could do one last thing, it’s got to be as a messenger that helps bridge the gap between patients and providers,” said Selma. “I can demonstrate that, yes, you can be living with advanced disease, and you can be receiving palliative care, which is not the same as hospice and end-of-life care. Right now, I am still a vital force—but I couldn’t be a vital force without this help.”
Selma, a cancer survivor for more than half her life, wrote about her family history of the disease and her own cancer diagnosis, first with breast cancer in 1983 when she was just 28, and then ovarian cancer 11 years ago, in the Patient’s Corner in The ASCO Post. (See “Despite a Recurrence, I’m Not Surrendering My Life to Cancer,” July 10, 2013.) It was an immensely brave thing to do because she had a busy career as the Founder and CEO of Vital Options International, a cancer communications organization, which produces The Group Room and Advocacy in Action video programs, and she worried that once the word got out that her ovarian cancer had recurred, her career might be in jeopardy.
In addition, she sat on several committees, including the National Conversation Subcommittee of the Assuring Value in Cancer Care Advisory Committee, a collaborative effort between ASCO and C-Change, an organization dedicated to eliminating cancer as a major public health problem. She was a founding member of the LIVESTRONG Young Adult Alliance steering committee, and she was also involved in projects with the Institute of Medicine, National Research Council, the National Cancer Institute, the National Institutes of Health, and the National Coalition of Cancer Survivorship.
All of these endeavors were crucial to her, and it was important for her to continue making a contribution to the cancer community through her patient advocacy initiatives and the filmed interviews she conducted with leading oncology experts at every major oncology conference, including ASCO’s Annual Meeting.
She needn’t have been concerned. Once the story was published, Selma received many letters of support from colleagues and friends and was relieved she didn’t have to carry around the secret any longer. Earlier this year, Selma was honored for her advocacy work with C-Change’s prestigious 2014 George H.W. and Barbara Bush Collaboration Award.
Living in two worlds
Over the past year, I’ve had many phone conversations and email exchanges with Selma, and I was always struck by her unflinching resolve and courage to persevere even as the cancer chipped away at the quality of her life and left her contemplating the dichotomy of pursuing life while preparing for death.
“I have the feeling of living in two worlds,” Selma told me. “I have one foot in the grave and one foot in real life, and I don’t feel like anyone else. Even when I’m in a public place I feel removed, like I’m a spectator instead of an active participant.”
In her last months, when we talked on the phone I could detect a slight hesitancy in her voice, caused by the increasing pain. What I never heard in her voice was self-pity. There was no wringing of the hands or searching for an answer to the unanswerable question, “Why me?”
In our last conversation, Selma expressed concern that oncologists needed to be more aware of ovarian cancer–related malignant psoas syndrome, a rare and challenging cancer pain state. In a follow-up email, she sent me this definition of the syndrome that she had found online: “[Malignant psoas syndrome] is characterized by deep somatic nociceptive (muscle inflammation and spasm) and peripheral neuropathic pain (lumbar plexus injury). Its low frequency may reflect a significant under recognition of this cancer pain syndrome. Patients with [the syndrome] are usually severely disabled with cancer pain that is poorly responsive to polymodal analgesic strategies.”
“This definition of malignant psoas syndrome sums it/me up perfectly,” wrote Selma.
Selma was smart, kind, compassionate, committed, and courageous. She also possessed a keen sense of urgency and an unfailing ability to seize today’s opportunities.
Because we lived on opposite coasts, Selma and I hadn’t yet had the chance to meet in person. A few months ago, at the end of one of our phone conversations, Selma said, “I wish we could meet.”
“Don’t worry,” I assured her, “I’ll see you at ASCO’s Annual Meeting.” There was no response.
I didn’t realize what she must have known: that that opportunity would come too late.
A lasting legacy
Selma’s work will continue through Vital Options and in the pages of The ASCO Post, especially in “Palliative Care in Oncology,” a column launched with Selma’s input late last year to address the evolving needs of cancer survivors throughout their treatment and survivorship. The results from those efforts will be her lasting legacy.
Selma’s impact on me personally will also be long-lasting, as I’ve learned by her example: Now, although I will continue to plan for the future, I’ll live every day like there’s no tomorrow.
Selma Ruth Schimmel is survived by her sister and brother-in-law, Debby and Ken Bitticks; four nieces, Shari, Michelle, Lynn, and Sandi, and their husbands; and eight grandnieces and grandnephews.
A public memorial ceremony celebrating Selma’s life will be held this summer in Los Angeles.
Originally published in The ASCO Post June 10, 2014, Volume 5, Issue 9