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My day job should have perfectly positioned me to know something was wrong, but the symptoms were so minor, so insidious, they could only be noted in retrospect. I lost a little weight. I was tired. So what, right? I worked long hours and was only getting older. I thought to myself, "Welcome to life, now stop your whining". The truth, however, wouldn't be denied when an acute rupture with internal bleeding sent me to the floor. I saw the scans, and despite the overwhelming desire my brain had to protect itself with denial and disbelief, I knew what I was up against. I felt sucker punched. Why me? It wasn't fair.
The next couple of months were filled with surgeries, exams, lab draws, and more imaging. It's all seared painfully into my memory. I felt vulnerable in a way life hadn't prepared me for. Maybe I knew too much and understood too well how things could go wrong. The final diagnosis was Stage Ic Granulosa Cell Tumor (GCT). Upon hearing the pathology results in an anesthetic fog, the only response I could muster was, "There's, like, one paragraph in the book on that". I knew little to nothing about it at the time. That has changed.
My tumor is rare. It comprises 2-5% of all ovarian malignancies or approximately 1/100,000 women. It did not take much investigation to learn there was very little known about GCT. It was a true orphan disease. After the initial treatment phase, I was unsure how to proceed. I was not the same person. I did the only thing I knew to do: I studied. I was very fortunate to have a scientific background so I dove into what literature was available. I was able to identify the very few scientists in the world doing research on the tumor. As I studied, I began to recognize that if there were ever going to be any breakthroughs in GCT treatment, it was going to require funding and probably even begging.
The one true positive effect of the internet is the power to link people with rare diseases. I made a connection with Kim Sager in San Diego. She has been suffering GCT recurrences for several years. We realized that with her business background and my scientific background, we should create a process to support GCT research. The GCT Foundation was established in May 2003. Through the foundation, Kim and I held fundraising events and invited researchers to speak. We began to communicate with other GCT patients who had an interest in supporting research. One of those key people was Sladjana Crosley, who later established the GCT Foundation in New Zealand.
Together, we worked to raise funds and form alliances between researchers. Sladjana had a scientific background as well and we exchanged hundreds of messages about papers in the scientific literature, new drugs and their mechanism of action. It was during this process that I discovered the DoD Ovarian Cancer Research Program (OCRP). I was instantly interested in participating. I filled out the application and kept my fingers crossed.
It took some time, but one day, the message came. I'd been selected to participate in the review of applications submitted to the OCRP. I was thrilled, but also a bit frightened and intimidated. My background helped me understand basic principles, but in no way did I understand the fine details in the project proposals. I soon came to realize my role was to see this process as someone with the disease who would desperately want to benefit from the research. The leaders of the program did not want to support research simply for the sake of supporting research; rather, they wanted it to matter and positively impact those dealing directly with ovarian cancer. Witnessing the intellect and dedication of the program leaders and participating scientists was awe inspiring, but also comforting. Like meeting Kim and Sladjana, I didn't feel alone with my disease. There were others who wanted this beast eradicated just as much as I did.
When the GCT Foundation was established, we were extremely hopeful, but also realistic. In all honesty, I didn't think we would see any significant breakthrough in our lifetime, but Kim and I agreed the answer would lie in the lab. We decided to apply all our funding exclusively to scientific research. We were fortunate to see some new information coming from our efforts, but not soon enough to help Sladjana. We lost her. It was a huge blow.
Just a couple of months after Sladjana's death, a landmark article was published in the New England Journal of Medicine, outlining the cause of GCT. It felt like a miracle and I know Sladjana would have been over the moon at the discovery. Out of all the billions of nucleotide bases on our human DNA, only a single base in a single cell becomes changed, resulting in GCT. A striking example of just how vulnerable the entire biologic process is.
The knowledge of how the base alteration leads to tumor formation, and more importantly, how to stop the disease in process, is still a long way off, but we were right about one thing: the answer does lie in the lab. We are so fortunate to have all the brilliant dedicated scientists across the world working on behalf of all women with ovarian cancer. They are true heroes. Pop culture forces so many icons upon us, but the real people deserving of admiration are those who tirelessly work on these projects with little reward. The CDMRP recognizes their true value, and for that, those of us who deal with the reality of disease are eternally thankful.
I recently celebrated 10 years with no evidence of disease. An unfortunate aspect of GCT is an association with late recurrences. Some recurrences have been recorded as long as 40 years after initial diagnosis and treatment. Because of the constant threat of late recurrence, I'll never be free of its grip on my psyche or my body. Nonetheless, I'm beyond grateful for these 10 years, and my heart breaks knowing others with this disease are not so fortunate. I know I'm extremely blessed, blessed beyond anything that is right and fair. I've been given time and a hilarious, kind, handsome husband to spend it with. My family is amazing, with an abundance of character, kindness, and patience. I've been fortunate enough to see and experience some of the most beautiful and interesting places on the planet. I have no intentions of stopping.
"Time management" seems like an anemic concept to describe what ovarian cancer has taught me, but I have no other terms to offer. A work-life balance is paramount. I run 2.5 miles and bike 4 miles every day, baring weather and work schedule conflicts. It is imperative to my sense of well-being. I log as much time as I can listening to waves crash on shores and despite being an iced tea Southerner, have developed a real affinity for winter sports. Only a busted chin could end my budding figure skating career and although I'll never win any style points, I'm convinced there isn't a mountain I can't ski down. Sliding on one's backside is, of course, allowed when indicated. Perhaps that's the best analogy for this disease: it may bring us down momentarily, but what's most important is that we maintain forward motion.
Last updated Wednesday January 27 2016