Transforming Health Care through Innovative and Impactful Research

Once upon a time, I joined an oncologist and a social work professor to give a talk -"Cancer Wisdom & Experience" - at our local community cancer support center. I joked that the two other panel members represented wisdom, and I represented experience.

I prepared for my presentation by drawing my own life circle... childhood, school, work, more school, another job or two, marriage, children, house, two dogs, and then the black hole. Cancer was the black hole in my life, the curse that changed my view of everything that had happened before and would inform everything that came afterward. The medical system entered the circle at the point of the black hole, but its trajectory was forward toward diagnosis, treatment alternatives, side effects, and prognosis, not taking account of all the changes that had occurred in one fell swoop. I needed help seeing my entire life, not just my life as a cancer patient.

I was 48 when I was diagnosed. My children were 7 and 10. My surgeon was wonderful, spending over two hours talking about the cancer and the surgery, but my mind was fixated on one question, how should I tell my children? Several years later, another oncologist brought me to Tufts Medical School to address a patient-interviewing class for first-year medical students. It struck me that I was the token terminally ill patient, the patient with Stage IIIC papillary serous adenocarcinoma. When I told the students that my first call was to the elementary school psychologist to ask how I should explain the news to my 7- and 10-year olds, I heard gasps all over the auditorium. The gasps were music to my ears, because these students, the best and the brightest of their generation, the ones who excelled at memorization and science and who were hell-bent on knowing each differential diagnosis and test, every chemotherapy and surgical procedure, would now not forget that a patient is first a person... a mother, a wife, a warm heart with a heavy weight to bear.

The black hole has faded on my life circle drawing. After my second round of chemo, I had to give up my career as a lawyer, but I have embarked on another career as director of a cancer support center. Here at Cancer Connection, we are not surprised that most people when diagnosed don't know what questions to ask, let alone what answers there are. We have no time constraints, no fifteen-minute appointments, no beepers or phone calls to abbreviate a discussion. Here there is time to reach an understanding about the cancer journey and our greater life journey and time to nurture our bodies and our souls among people who truly understand. Peer counseling, support groups for people living with cancer, and others for their families and caregivers, exercise classes, creative classes and integrative therapies like massage, acupuncture, guided imagery, Reiki, and reflexology are all capable of easing the cancer journey. Although I work full-time, my colleagues are completely supportive when I must undergo another round of treatment. If only life were always this forgiving and adaptable!

My children are now 18 and 21 and thriving (despite the horrors of adolescence... there are no free passes for the parents of teenagers, even when their moms have cancer!). Eleven years ago I reluctantly flew to Montana for the ovarian cancer survivors retreat at Camp Mak-A-Dream to spend four days among my peers, where there is no need to censor my feelings or my words and where I can release the emotions that I am not even aware of bottling up the rest of the year and then go home reenergized. I have returned ten times for my "Montana cure."

In none of these activities have I been able to have as profound an effect on the future of ovarian cancer and its treatment as my work as consumer advocate for CDMRP. The science is daunting, and the caliber of the professionals on my review panels has left me overawed; but, lo and behold, they respect my comments because I am truly in the trenches. I know what chemotherapy feels like. I know how the side effects can undermine career and family, expectations, and free will. In my small way, I can convey the emotional and practical side of living with ovarian cancer to doctors and researchers who may have met few if any women with ovarian cancer before, and I can explain why certain research proposals will offer or deny them hope for their futures and the futures of their daughters. Perhaps most importantly, I can relay to the many hundreds of women living with ovarian cancer the inspiration I have gleaned from reviewing brilliant research proposals from around the world with passionate doctors and researchers who are committed to finding a test for early diagnosis, livable treatment, and even a cure for this disease.

Cancer is no longer a black hole in the circle of my life. It is a mystery, and I am constantly adapting to life with mystery. Dr. Rachel Naomi Remen wrote in My Grandfather's Blessings, "Mystery requires that we relinquish an endless search for answers and become willing to not understand. That we be open to witness. Those who witness life may eventually know far more than anyone can understand."