When and how did you get involved with SHARE?
Seemingly out of nowhere, I broke into tears at an appointment during first-line treatment, which made my oncologist very uncomfortable. He quickly left the room and when he came back he handed me a SHARE pamphlet (or those big cards) and said, "Call these women. They're great." A few days later I got up the nerve to call the helpline and spoke with Harriett. It was the first time I had spoken with another ovarian cancer survivor who was alive and doing well. She had gone through everything I was going through, felt many of the same things I was feeling, and provided resources to connect with other survivors in a local support group and on-line. By the end of that call I was filled with so much hope, and I knew I was going to get through treatment and become a volunteer so that I could help others in the same way.
What have you done for or with SHARE?
I joined a peer-led support group (and later facilitated), attended educational programs, and volunteered on the helpline. Back then we covered the helpline for a whole day once a week--I was the Friday girl. I was still working full-time so I would return calls during my lunch break. In 2008 I was part of the group led by Linda Koteen that presented the survivor perspective at SGO (Society for Gynecologic Oncology). I have moderated SHARE programs on recurrence, clinical trials and report backs from medical meetings.
How has SHARE helped you?
I am alive today because of SHARE. When my ovarian cancer recurred, I was able to speak with other recurrent survivors who gave me hope that one can manage recurrent disease long-term and showed me that there is not just one "right" way, but that there are many different ways to cope and live--I just had to try things out and discover what works for me. I learned the language and how to communicate more effectively with my medical team. My support group facilitators helped me plug into reliable sources of information to help guide treatment decision making. Without this empowerment, I would not have been able to advocate for the aggressive treatment which brought me to this third and longest remission of over eight years.
I was drawn into research advocacy while learning more about my own treatment options. Since then, I have had amazing opportunities to learn more and to serve the ovarian cancer community as a research advocate.
What is your 40th anniversary wish for SHARE?
My ultimate wish is for a day with no cancer. Until then, SHARE will continue to help people like me learn to navigate through and beyond diagnosis and treatment, and to find ways to be involved to bring us closer to a day with no cancer.