Consumer Involvement
Being diagnosed with ovarian cancer changed my life forever. On Thanksgiving Day in 2001, I awoke from a 6-hour surgery to my parents softly weeping at my bedside. The room was dimly lit, but I could see my parents holding each other up at the foot of my bed. They seemed devastated, and I knew in my heart that the news must be bad. It was supposed to be a simple surgery to remove fibroid tumors, but instead they found ovarian cancer.
When you are 30 years old, the last thing in the world you are thinking about are your last days on Earth. I had so many dreams and goals, all of which were completely tossed aside in an instant. I was now in a fight for my life. Over the course of the next few days, the doctors broke the news to me: it was stage 2b ovarian cancer, and it had spread to the surrounding tissue and some lymph nodes. The most tragic news was that doctors had to perform a radical life-saving hysterectomy; I would never have children of my own. Two months after starting chemotherapy, the cancer had spread to my liver and the lining of the stomach. By the fall of 2002, much to the amazement of my doctors, I was in complete remission.
Six years after my ovarian cancer diagnosis, I was diagnosed with thyroid cancer, which may or may not be traced back to the many CT scans I endured during ovarian cancer treatment. Today, I am still cancer free, but have many side effects from my chemotherapy and multiple surgeries, including joint pain, neuropathy, chronic fatigue, and kidney disease. Nonetheless, I feel blessed to be alive and plan to do the most I can with the time I have left.
I'm involved with many different ovarian cancer advocacy organizations, such as the Ovarian Cancer Research Fund Alliance, National Coalition for Cancer Survivorship, American Cancer Society Cancer Action Network, and American Association for Cancer Research. I do my best to represent ovarian cancer survivors everywhere, but most especially to be a voice for those taken by the disease way too soon. Sadly, there are few ovarian cancer survivors who are healthy enough to become advocates, so I have decided that this is where I can step in and lend my story, my voice, my expertise in cancer advocacy, and my skills as a writer to help bring about positive change. It is essential that the consumer advocate community persevere with this life-saving work. Fellow cancer survivors need to be encouraged to become involved, especially minorities and underserved populations.
I first served as an Ovarian Cancer Research Program (OCRP) peer reviewer in 2017. I was extremely nervous! I was nervous about being "just an advocate" surrounded by researchers and clinicians much more knowledgeable than myself. But once I started talking with my fellow panel members, I was much more at ease because I realized the researchers and clinicians valued the opinions of advocates.
I have great admiration for all of the hardworking researchers and clinicians who have dedicated their entire lives to not only finding a way to successfully treat ovarian cancer, but finding a viable tool to detect it. I'm thankful for their persistence and tenacity! I ask that they keep at it, despite all of the discouragements. In turn, I promise to keep working hard as an advocate, encouraging our elected officials to increase funding for ovarian cancer research. I visit Capitol Hill at least three times a year to discuss general cancer and ovarian cancer research funding and to help ensure protection of the OCRP. I promise to be just as tenacious as the scientists who refuse to give up!
Last updated Tuesday, November 12, 2024