I’m 68 years old, which wasn’t supposed to happen. I was diagnosed with Stage IIIC ovarian cancer in May 2005 when I was 61, with a prognosis of two to three years left to live. My nightmare began when I went to my gynecologist because of increasing bloating – a three-inch expansion of my waistline over two months with no weight gain. I had no idea it could be cancer, or ovarian cancer – the most terrifying cancer of all. My gynecologist did a pelvic exam and when I saw the sympathetic look on her face I knew I was in big trouble.
The first week my life was turned upside down. I was actually euphoric on learning that my diagnosis was Stage III and not Stage IV – since I thought, with no understanding of the facts, that Stage III could be treated and Stage IV was an immediate death sentence. Today, I know a good number of long-term Stage IV survivors. The second week my six-inch tumor was surgically removed along with my uterus, my other ovary, my fallopian tubes, my omentum, which was seeded with cancer, a couple of lymph nodes, and my appendix, for good measure. I was tremendously happy to get the alien tumor out of my body, and I was told that I woke up smiling in the recovery room.
Week three I had the honor of talking with Sean Patrick. My law partner, Kathy Powers, lived in the same group of homes in Carbondale as Sean, and Kathy asked Sean if she would talk with me. I gathered my courage (I still had some denial going on) and called. Sean was so wonderful! She spoke to me for over an hour and helped me enter the world of reality about my disease by giving me both information and advice on how I could find out more about ovarian cancer. Among other things, she told me that her strategy was to try to survive for two years at a time, and by then there would be newer and better treatments. I wish so much that her strategy had worked for her.
Sean recommended I join the Nicki’s Circle ovarian cancer support groups held in Denver, where I live, saying that the groups were a place to learn more about the disease and treatments, and that they weren’t gloomy and depressing. I attended and found a group of strong women who were active in fighting their cancer. Many of them became close friends, but many have since, very sadly, been lost to their disease. Interestingly, I have since learned that Sean suggested the name for Nicki’s Circle.
Since I was a young woman I’ve been an activist for social justice, especially for women. I was inspired by my mother who suffered a life of depression and misery because she was so undervalued as a girl. I’ve been President of the Colorado Women’s Bar Association and Chair of the Board of SafeHouse Denver. I think it’s ironic that when I came down with cancer, it was a cancer that only women can get.
In 2007, I joined the Board of the Colorado Ovarian Cancer Alliance (COCA) when our annual budget was $30,000. We handed out symptom cards at health fairs and we funded our Nicki’s Circle support groups. By March of 2010 I was Vice President and our President, my very good friend, Nancy Zurbuch, died of her Stage III ovarian cancer. I became President and, in February of 2011, my very good friend, Lucy Trujillo, COCA’s first Executive Director, died of her Stage III ovarian cancer. COCA struggles with our losses, but they also inspire us to keep fighting. I’m sure that HERA feels the same.
This year, COCA’s budget has expanded to over $350,000, mostly because of our annual Jodi’s Race for Awareness (scheduled June 2, 2012 in City Park, Denver) and we are adding programs to promote awareness of symptoms (there’s still no screening test!) and to support survivors. We lost Jodi Brammeier, founder of Jodi’s Race, in August 2010, of her Stage III ovarian cancer. Jodi continues to inspire us.
I am among only 10% of women with Stage III ovarian cancer to survive over five years without a recurrence. Counting the losses of the great women I’ve known with Stage III ovarian cancer, I know I am so very fortunate. My work with COCA absorbs me because ovarian cancer is too often a matter of life and death. Our COCA Board is composed of survivors and friends and family of women whose lives have been taken by the disease. Our volunteers are dedicated because the stakes are so high, and most of our donors support us out of their personal experiences because the cancer we are battling is so vicious and deadly.
My emotions are often difficult to contain. I go through periods of time when I’m flattened by all the deaths, and then I believe that if we can get women to insist that their symptoms be taken seriously by their doctors, if we can support more women through their treatments and recovery, and if we can advocate successfully for more dollars for research, we will save lives, and I have the energy to continue fighting. I’m very proud of COCA and I think we are beginning to make a difference.
Thank you all for your part in this fight. I appreciated the help I received from Sean Patrick, and I appreciate all of you who are part of HERA. Please keep up your good work!