I was 50 years old when I was diagnosed with ovarian cancer. I was training for the Chicago marathon and noticed that I was unusually tired. I underwent a battery of tests from MRI of my brain to tests for my heart and lungs. After doing a pap smear, it was recommended that I do a vaginal ultrasound. That test showed what was initially believed to be an ovarian cyst. It wasn’t until the surgery to remove it that it was discovered that it was in fact ovarian cancer.
Ovarian cancer changed my life dramatically. During chemotherapy, I had a very difficult time communicating with my oncologist about the decisions she was making about my care. I felt like I had lost control over my life and that I had no choice in how I was going to be able to live. After chemotherapy, my ability to walk was impaired. I suffered from extreme pain in my hips, fatigue, and rapid weight gain. I couldn’t work or take care of my children on my own. Having ovarian cancer impacted me financially and emotionally for several years after my diagnosis and treatment.
I have found meaning in that horrible experience. Through my advocacy efforts, I have shared my cancer story to audiences of people with cancer, caregivers, and researchers. I have been involved in several advocacy organizations including the Ovarian Cancer Research Alliance, National Coalition for Cancer Survivorship, National Ovarian Cancer Coalition, Foundation for Women's Cancer, and Patient-Centered Outcomes Research Institute. Each organization focuses on a particular level of advocacy. I wanted to learn about all aspects of awareness, policy, and research advocacy, so I joined them all, and I am a better patient advocate for that exploration in learning.
I am committed to helping new advocates learn more about scientific inquiry. I have created training modules that help survivors, caregivers, and patient advocates that want to learn more about research advocacy. These modules are presented by scientists, M.D./Ph.D. students, and representatives from the clinical trials industry. I strongly believe that advocates have to have a solid understanding of ovarian cancer research in order to persuade others on disparities in funding and the impact that lack of funding is having on breakthroughs in diagnostic testing and therapeutic treatments. I have also had opportunities to speak to medical students. I hope they will hear through my cancer story that cancer is a human experience and not just a medical one.
I was recommended to the Ovarian Cancer Research Program (OCRP) by a senior advocate leader. I definitely feel a strong commitment from the OCRP in the treatment of ovarian cancer. The staff and scientists greatly expressed their gratitude for the work that patient advocates do on the Hill to ensure the funding for the OCRP. Our cancer stories matter. Armed with a complete understanding of the research would strengthen our position as patient advocates when we speak on the need for increased funding.