September is ovarian cancer awareness month, and, as a survivor, it always reminds me that life is definitely a journey. Most of us forget to value what we find most precious, and many just get lost in the day to day humdrum of the 24 hour cycle. Sometimes it just takes a good day to re-find our spirit. But other times it takes a miracle.
It had been a tough couple of years. I often joked that when our container of possessions came over to the States from England in Jan 2001, a giant mirror must have broken on the ship, because it definitely felt like we were getting a lot of bad luck. But then two beautiful twin girls brightened our horizon in 2004 and life was looking good, until my husband was diagnosed with cancer on their 1st birthday.
As a mother of two babies, a caregiver, and feeling terrible, by 2006 I was fatigued and depressed. So I got back into horse riding, a lovely, mellow old horse named Spirit. But one day he was definitely disgusted with me, wouldn’t do anything I asked. When I got off, I felt like my insides had been through a spin cycle. Two weeks later, after what I thought was a bladder infection, I was told that I had Stage 3c ovarian cancer. My girls were 2.
So today, after seven years, 4 occurrences of ovarian cancer, and living with cancer as a chronic disease, where is my hope? Where is my miracle? Well, Winston Churchill is quoted as saying that “whilst doubt cramps power, hope releases it.” As an exasperatingly unbearable man, to both work and live with, he achieved greatness because in his mind there was no room for failure. Hope freed him to overcome enormous obstacles. In the adversity of war, or in the face of not seeing your children grow up, how do you release that hope?
In search of that hope, when my wonderful research nurse suggested I apply for the CDMRP Consumer Reviewer program, I jumped at the chance. She and my Gyn Onc always said I asked them the hardest questions! Already involved in ovarian and general cancer advocacy, I was accepted.
In that first meeting I was so scared to be amongst prestigious researchers and doctors, even though I had a PhD myself. But they really listened to what I had to say. They listened when I said “that’s just not practical for a survivor” or desperately tried to get them to achieve more, or vocalized the urgency of getting an answer. Now many of those researchers follow my Non Profit 501(c)3 Ovarian Cancer Together! Inc’s Newsletter, and I consider them friends. What I did in that room made a difference. That’s what being a Consumer Reviewer is all about.
It pushed me to work harder for other survivors. So now advocacy and supporting other survivors is my miracle. It gives me my hope. After finding no way to connect with other women in my rural state of New Mexico in 2008, I had started a website and handed out my own leaflets at health fairs. As I was able to network with more and more women, a support group, and more and more health fairs, grew out of my efforts. Then our family moved to a rural part of Washington State and I realized my efforts were needed all over again. Our state based online chat sites became national in 2012, because of so many requests to join from women all over the country. Now we have nearly 150 members nationwide. Our first fundraising walk this year drew in over 200 people and raised over $8000 for research. And now my dream come true is about to happen in September. We worked with our Senator, Sharon Brown, and the Washington Department of Transport, and for the first time in the State, for any cancer, our city’s cable bridge will be lit up in teal for the whole of the month. We will reach over 100,000 women with our message!
Diagnosed at 39, seven years later, I’ve found my miracle. I’m living with ovarian cancer, not dying from it. And shouting as hard as I can so that everyone knows it.
Kay Kerbyson, PhD
President Ovarian Cancer Together Inc
