Companionship and Hope Every Step of the Way
By Catherine K.
How does one live with cancer? It’s a question I never thought I would ask myself. But in August of 2014, I lay in a hospital bed pondering such a question. I had just been in the Adirondacks. As my sister helped me get ready for vacation, I distinctly remember remarking to her that I felt bloated: “Gee I look pregnant!” At age fifty-two, I knew I wasn’t; I had been in menopause for a few years.
During the first few days of vacation, my husband Kris remarked on how little I was eating, but I dismissed his concerns. By Monday, none of my clothes fit, so my daughter and I drove to the outlets and bought some. On Tuesday morning, I asked Kris to take me to urgent care, where the verdict was diverticulitis. This diagnosis made sense to me, and I made an appointment to see my doctor upon my return home. Even though I didn’t feel great, I was having a wonderful time with family and friends. However, as the week progressed, it became harder to hide the fact that I wasn’t feeling well. By Friday evening, Kris didn’t like the way I looked; we left for home early Saturday morning. That evening, he drove me to the Emergency Department.
After undergoing a CAT scan, a Physician Assistant in the ED told me the images revealed metastatic cancer. Kris and I stared in disbelief. Then I very calmly corrected the PA: “It sounded to me like you said ‘cancer’, but I have diverticulitis.” When she left the room, it sunk in that I was just diagnosed with an unspecified cancer. Kris and I held each other in silence for a long time. I finally told him he had to go home to be there for our daughter in the morning. He also needed let our son know what was happening. I remained awake for the next forty-eight hours; I couldn’t quiet my mind.
My primary care physician was in my room the next morning with encouragement: “We will figure this out, so let’s take one day at a time.” By the afternoon, my husband, children, parents, sisters and brothers-in-law were all with me. When the oncologist walked in, I introduced him to my “big Italian family” and told him he could say anything in front of them. After all, my cancer diagnosis was about to affect all of them, not just me.
That night, I was transferred to another hospital. The next morning, an oncologist told me I had ascites, or fluid buildup in the abdomen – I was not pregnant. I was scheduled for a removal of the fluid and a biopsy on Tuesday, port placement on Wednesday and my first chemo infusion on Thursday. I liked my new oncologist immediately – she had a plan.
My biopsy revealed ovarian cancer. What did I know about ovarian cancer? I knew my Aunt was diagnosed with the disease at the same age as me. I knew how bravely she faced surgery and chemotherapy. She even wrote an article that was published in the newspaper about what cancer couldn’t take from her. I knew what hospice looked like, as I spent many afternoons with her until she passed. And I knew I didn’t want cancer.
My oncologist reassured me we would move ahead with the plan and added that after two cycles of chemo, I would have surgery then continue chemo. She asked if I would be open to talking with her Nurse Practitioner. I agreed. This nurse sat with me and explained that treatments have advanced in recent years. She talked about genetic testing and shared a video of women living with ovarian cancer. I will always remember the time she spent with me as the first step to empowering myself to live with cancer. I felt hopeful and, over the past seven years, I have watched that video many times.
That evening, my sister walked in saying, “I found a race!” A 5k race for ovarian cancer was to take place in five weeks. It was another step toward empowerment: stay active! I was going to run in that race, or so I thought. Our team “I’m So Ovary This” was born. Although I wasn’t able to run, I walked the entire distance. I was the last person to cross the finish line but stayed in front of the chase car.
Surgery removed as much of the cancer as possible and included a colon resection. After a few weeks, I was able to return to chemo. I was determined to continue walking but needed help. Another step to living with cancer is learning to ask for help; family and friends frequently walked with me.
After chemotherapy ended, I went for a baseline CAT scan. A few hours later, I received a phone call from my oncologist; a tumor near my spleen had not responded to treatment. At the time of the call, I was packing for a vacation to celebrate the end of chemo. I took that vacation to Turks and Caicos and returned in time for a splenectomy.
Genetic testing is a very personal decision, but for me it was an easy one, as the more information I have, the better I feel. I tested positive for the BRCA2 mutation on my mother’s side of the family. This was unexpected, as my aunt was my father’s sister. Yet, my maternal grandmother had died of an unspecified cancer. A traditional Italian woman, she didn’t speak of “those things.” However, my mother’s research into her large extended family revealed a history of pancreatic, breast, colon and ovarian cancer.
“Deep breaths, Catherine,” I thought. “What will you do with this information?”
I shared it with my children, siblings and cousins. I encouraged testing and discussed preventive care. I believe it is important to share any information that may have an impact on others in your family.
The BRCA2 mutation increases my risk for other cancers, including breast cancer. The thought of dealing with another cancer was a cause of anxiety for me, so after discussion with my husband and children, I elected to have a preventive bilateral mastectomy. I did not go into this surgery lightly and did a lot of information gathering and mental preparation beforehand. Even though I still wake up at night worrying about things not in my control, this decision brought me some calm. I have learned that living with cancer is advocating for what you need.
In the seven years since my diagnosis, I have been on eleven treatment plans. Sometimes I feel I am living the carnival game, Whack-a-Mole! Each progression and each treatment change brings anxiety, which dissipates with support from my family, friends, and my medical team. Since my diagnosis, I returned to work as a physical therapist and have traveled frequently. I retired in the fall of 2019, as I wanted more of my energy to be shared with my family. Kris, our son Kristopher, and daughter Sara have provided me with tremendous love, support, and strength through everything. Kristopher is getting married in December 2021 to a lovely young woman named Stephanie, which gives me something to look forward to!
In July of 2020, I reached out to the Coalition. I needed more support and knew gynecologic cancer survivors are welcome. Gentle Yoga classes, a cooking demonstration, and the Common Ground group for those living with metastatic cancer have provided me with wonderful support and peace. I’ve learned that, on any given day, I can go through two or three stages of grief within an hour! I try not to linger there, and discussing these feelings with the Common Ground group has helped me continue to keep my glass half full.