Consumer Involvement
I was working full time as a nurse practitioner when I was diagnosed with Stage 3C ovarian cancer in 2015. I was fortunate enough to have my care at a center of excellence in Boston, MA. As a result, I received both intraperitoneal and IV chemotherapy. I retired from practice when it became clear that I could no longer work at my previous level. I knew that I wanted to get involved in advocacy work, which paired well with my background.
The Cancer Connection, a local non-profit, offers a range of programs and support groups – all at no charge to the patients or their families. It is a place to turn to after one receives their diagnosis of cancer, offering a haven to patients and their families during a time of chaos. After availing myself of their treatments and programs, I became a "Befriender” as soon as I was able. A Befriender undergoes training on how to talk in person or on the phone with patients and their families who call or drop in to our facility soon after their diagnosis. While the Cancer Connection services Western Massachusetts, we’ve received calls from family members or friends as far away as Australia who have loved ones in our area with cancer.
In addition, I volunteer my services to "Turning-the-Tide Ovarian Cancer Survivor Retreat”, maintaining the blog and Facebook pages. "TTT,” as we call it, is run by two amazing women, Anne Tonachel and Sue Joanis. Any woman living in the Northeast can attend this 5-day retreat on the shores of Damariscotta Lake. There, she can participate in zip lining, meditation, massage, facials, archery, water activities, or just hang around and talk with other women about their experiences with ovarian cancer.
When I heard about the "Survivors Teaching Students” program run by the national organization, Ovarian Cancer Research Fund Alliance, I knew that I wanted to get involved in that too. Since we didn’t have a chapter in our area of Western Massachusetts, I started one with the help of other ovarian cancer survivors. We talk to medical students as well as nurse practitioner and physician assistant students to heighten their awareness of ovarian cancer symptoms.
For the first time last year, I served as a consumer reviewer for the DoD’s Ovarian Cancer Research Program (OCRP). This program totally captivated me, offering me a view into the many types of research being done in the early diagnosis and treatment of ovarian cancer. Reading the applications and meeting the scientific members of the peer review panel allowed me to witness firsthand the dedication and commitment of the scientific community to improving patient outcomes.
Serving as a consumer reviewer for the OCRP was an incredibly humbling and inspiring experience for me. The thoughtfulness and exquisite attention to all facets of the proposals by the peer review panel, as well as the breadth of the research, gives me tremendous hope that breakthroughs in early detection and developing novel treatments will be made. I am so grateful to have had this opportunity to see firsthand the amazing work the DoD OCRP does.
My family and I know that I am alive today because of the detailed, painstaking work of previous researchers in the field of ovarian cancer. As a result, I have been able to slowly reclaim my life and return to my previous activities, such as flying, hiking, and biking.
Last updated Thursday, May 26, 2022