My Road to Advocacy:
In 2005, one month after my 50th birthday, I was diagnosed with ovarian cancer. Enlarged ovaries and pain led me to see a gynecologic oncologist at the Rutgers Cancer Institute of New Jersey. After surgery, I remember looking up at the clock in my recovery room. I knew the surgery had taken much longer than expected so I was not totally surprised when my gynecologic oncologist said, “You have stage three ovarian cancer.” But she followed up those words with “ I will do everything I can to make you well.” Those words gave me hope to move on to the next step.
I was offered a phase I clinical trial, which added selenium to carboplatin and paclitaxel. Taking part in the clinical trial meant another full day of treatment every three weeks as well as many blood draws. Weighing the pros and cons, I decided to take part. Having the support of my husband and children helped to make my participation possible.
Once chemotherapy started, I lost my hair, found all the food I ate tasted the same and was very fatigued. I hadn’t met another woman with ovarian cancer so I reached out to Cancer Hope Network to be matched with a survivor. From that five-year survivor, I learned that what I was feeling – physically and emotionally – was very common. I also learned to ignore the statistics and look to the future.
In early 2006 I was told there was no evidence of disease and I returned to work. After attending the LIVESTRONG Survivors Summit in Austin, Texas in late 2006, I helped start a gynecological cancer support group at my cancer center and began my work as an ovarian cancer research advocate.
Even in 2007, I still had a hard time finding stories about women who had been diagnosed with ovarian cancer. In December I started a blog, Women of Teal. By blogging I could share my story, the stories of other women and information about the disease and awareness events in my area.
In October of 2008, a CT scan showed a tumor on my liver and another on my spleen. This time around I had a better idea of what to expect and knew the nurses and doctors who would be treating me. I had a few options including taking part in a clinical trial again but I chose to have surgery followed by chemotherapy. In 2009, I once again heard I had no evidence of disease.
Since then I have written a book with a gynecologic oncologist, served as a patient advocate on an American Society of Clinical Oncology guideline panel, co-founded an online Twitter community, and served as a patient advocate on my cancer center’s Scientific Advisory Board. But what I have enjoyed most is speaking to women throughout the state who are beginning their journeys with ovarian cancer.
I offer them this advice.
Please see a gynecologic oncologist for surgery. Studies have shown that outcomes are better for women who have surgery by a gynecologic oncologist.
If you are in treatment, have an unusual pain or side effect or something just does not feel right, then speak to your doctor or the nurse. Do not worry that you are bothering them.
It is okay to ask for help. And it is okay to do things differently. You can start new traditions and they can be just as meaningful as those you did for many years.
You do not have to face this alone. Ask your doctor or social worker if you need help with finances and emotional issues. There are a number of excellent online and in-person support groups as well as peer support networks.
Cancer has taught me a great deal in the past several years. My hope is that in the not so distant future I will be able to hang up my advocate’s hat because we will have a screening test and a cure for ovarian cancer.