Moving Every Day

I was first diagnosed with Granulosa Cell Tumor (GCT) ovarian cancer in 2010. I discovered the tumor when I was training for my first half marathon. I noticed that I had a hard bulge near my waistline that just simply shouldn’t be there. To be honest, I was quite distracted at the time. Nine months prior I had started a new work position at my company and soon after my six-year-old son had broken his femur in a ski accident, resulting in emergency surgery, followed by home care and physical therapy. I guess you know when something is “off”, but I overlooked the telltale symptoms that are so common to women; irregular periods, constipation, and fatigue. I even brushed off a horrific night when I found myself flat on the floor of my bathroom, writhing in pain, assuming I was having an adverse reaction to something I ate when in reality, that was likely the night my tumor burst and absorbed my left ovary as I would find out later.

I ended up having surgery in June 2010 to remove “Bertha”, as the tumor became known in our house – much easier to have a code name to give to my children who were age 6 and 8 at the time. With the removal of “Bertha”, my left ovary, and the fallopian tube, I basically felt like I had “dodged a bullet”, having been told I had a very rare cancer but ‘all was fine now’ and the likelihood of recurrence was quite low. Further, I was told, if cancer recurred at all, it would likely be many, many years from now. I had CT scans, ultrasounds, and blood work over the next five years and basically assumed at that point that yes, all was good in the world.

In 2017, now seven years from my diagnosis, I was running my second half marathon and I couldn’t believe that at the mile 8 marker I had to stop to go to the bathroom. I’ve never stopped during a race. I knew something was wrong and my doctor sensed it from my voice when I called him. Sure enough, a grapefruit-sized tumor was now pressing up under my bladder. This time, however, the CT scan and ultrasound indicated not only the large grapefruit-sized mass but spots on my liver, near my colon and lymph nodes. The “potential rare recurrence” I had heard about seven years prior was suddenly all too real and feeling larger than life itself. My new surgeon outlined a plan, which was reassuring, but overwhelming at the same time. We shared with our boys that “Bertha was back – or perhaps it was her evil twin”, but now at ages 14 and 16 they knew what Bertha really represented. I had a significant surgery in December 2017 with a complete hysterectomy, removal of several lymph nodes, and small tumors in the omentum and near the gall bladder.

I’m not going to sugarcoat it. This was a big surgery for me with a 36-staple incision and a five-night hospital stay. Prior to ovarian cancer, I was healthy, a runner and swimmer who worked out five days a week. During my hospital stay, I lost my will a few times and was sick at the sight of those staples. It’s probably one of the few times in my life I wanted to give up. But my hospital team pushed me and Alan, my husband, and our family and friends were incredibly supportive. The day after I got home from the hospital, Alan and I went for a short walk in our neighborhood. The air was cold, but it really felt good to move and to breathe that cool air into my lungs after having been inside for so many days. We came across a man walking his dog, whom we noticed only had three legs. We heard the dog’s story of having lost a leg to cancer and it was all I needed to rally and get myself moving. My friend Wendy and I decided later that week that we needed to finish the race that we started eight years ago and signed up for a half marathon together. I was motivated and ready to move! Running makes me feel strong. And it is meditative and allows me to escape for a bit. It’s something I generally do alone but I like the adrenalin of races and the energy it brings to everyone. I also really enjoy being out in nature.

In early January 2018, right after we signed up for the race, I learned that given the recurrence and the possibility of GCT cells likely remaining, the recommended treatment was chemotherapy. Knowing that the prescribed cocktail would result in full hair loss, I looked into options like cold capping, but as soon I heard that I wouldn’t be able to swim or really wash my hair or have a ponytail, I shaved my head, bought a wig and embarked on the treatments over the next six months. Running, swimming, and skiing during that time kept me going, even on my toughest days. Just having a goal and a literal finish line to cross at the end of the treatment was such a motivator for me. I believe all that training activity also helped me get through the neuropathy and other side effects because I kept my body well hydrated and in constant motion. As the months progressed, the longer training runs became difficult and my oncology team really pressed me to consider not running the race in June. My last treatment was on May 30, 2018, and the half marathon was that same week. I would only have a few days to recover after the last treatment and lace up for that race. About 2 weeks before the race, my surgeon, who happens to be a marathoner, provided me with this counsel. “The day of the race you must promise me two things: 1) ask yourself if you are physically able to run this race today and 2) can I mentally and emotionally do it? If you cannot answer yes to both of those questions, then you must reconsider.”

On the day of the race, my friend Wendy, my doctor, and I laced up our sneakers and I answered yes to both of those questions. It was hard; I was tired but I had Wendy by my side every step of that 13.1 miles. And it was emotional. Alan and my boys Jacob and Jonah met me at every mile marker on their bikes and cheered me on. Mile 12 was the hardest point because I was so close to finishing and all the stress, and fatigue, and challenges over the past eight months just came flooding through. But Wendy and I crossed that finish line together.

One thing I have done over the past ten years living with ovarian cancer, I have researched and learned how to manage this disease including my diet and lifestyle. I also connected with other women with ovarian cancer, The “GCT sisters” provide amazing support, strength, and information that encourage me to continue asking questions and bringing ideas to my medical team. When I learned that one of my friends Terri from the group passed away I was devastated and in disbelief that this vibrant woman, who was such a connection for many of us, was gone. When I learned about NOCC Team TEAL and the opportunity to run in the New York City Marathon, I knew I had to raise my hand. It was no longer an option to just be healthy. I knew in my heart it was time to give back and fight for others. While running the marathon will be one of the hardest things I will do in my life, it pales in comparison to anyone living with cancer. I will run for that we have lost and those of us that are still fighting the good fight. My surgeon said to me recently, “you running the marathon on Letrezole is like me running the marathon in less than two hours”! That is because Letrezole, while it keeps my cancer cell growth at bay, eliminates estrogen which lubricates your joints. So I won’t be breaking any records that day and I may look like a little old lady at times, but I will run across that finish line.

I know that I will battle Granulosa Cell Tumor ovarian cancer for the rest of my life. But I have a choice every day. I can live and hold up those around me, or I can sit back and let life pass me by. I choose to keep moving – and in this case – running every day.