Early in the summer of 2006, I was happily married to Dick, my husband of 44 years, enjoying being the grandmother of four, and looking forward to beginning a new job. An Early Childhood teacher for thirty years, I recently had become the program manager for a Boston nonprofit organization, Hospitality Homes.
As a resource for folks who must travel to Boston for medical treatment, Hospitality Homes provides free lodging for families in the 150 host families' homes that are a part of the program. We had been a host family for years when I had the opportunity to become more involved as an employee. Sitting at my desk one day, I received the phone call no one wants to get from their primary care physician: "You have a large mass, and I am referring you to a GYN oncologist."
However, there is life before and after that kind of call!
After surgery, I was given the option of receiving standard chemotherapy or participating in a clinical trial. I didn't know then just how fortunate I was to have this choice. At the time, it seemed to be an overwhelming decision to have to make but, after consulting my family, who had started doing research while I was still in surgery, and a couple of trusted medical friends, I opted to begin a clinical trial under the care of my oncologist, Ursula Matulonis, at the Dana-Farber Cancer Institute. It was a rough 28 weeks of treatment each week, but here I am five years later with no evidence of disease.
Since my diagnosis, I have had the privilege of meeting many amazing women who also have been diagnosed with ovarian cancer. Some are doing well, others continue fighting with great courage and determination, and others we miss. We support each other, and our families have learned to live with our great enthusiasm and appreciation of the possibilities the disease has to offer. There is a great sense of urgency to find a real method of early detection for ovarian cancer. I think each woman I know with the disease feels this. We are united in finding a method that will save our friends, daughters, nieces, and mothers from struggling with ovarian cancer. I have been privileged to talk to GYN residents and interns about my experience with ovarian cancer, and to be a mentor for other newly diagnosed women through the One-to-One Program at Dana-Farber. Dick and I have also joined the Dana-Farber Patient and Family Advisory Council, where we have many opportunities to be involved with improving services and the quality of care at this great institution.
I was introduced to the Ovarian Cancer Research Program (OCRP) when I met Carolyn Branson, the CDMRP's representative at the 2008 Stowe Weekend of Hope in Vermont. I brought the literature home with me, but it took another year for me to really act on it. In 2009, I served on my first panel, and was able to serve again in 2010. That first year I was nervous, but the great care that the OCRP staff showed me, and the very supportive words spoken by the science reviewers regarding the role of consumer reviewers in the process, have encouraged me to continue to participate. I am honored to represent all women with ovarian cancer, and I am happy to be able to return to my own community in Boston with the encouraging news that there is much work being done to find markers for early detection as well as better therapies for women newly diagnosed and those with recurring disease, and to share the progress being made toward finding a cure for ovarian cancer.
Five healthy years after my diagnosis, here I am living well, enjoying six grandchildren, travelling with Dick to visit family and some of the countries we had dreamed of going to - and knowing that I now have a greater appreciation for the gifts of my family and my life.