My story begins during a 3-week trip to New Zealand in February and March 2020. For years, my husband and I had dreamed of hiking the spectacular mountains and coasts of New Zealand. Now that we were in our 60s and closing in on 40 years of marriage, we had our chance.
Except for being susceptible to colds, I hadn’t ever noticed any health concerns, and I had an uneventful physical exam a few months before we left. A week into our trip, I found a mass in my stomach and felt bloated and full, which could be signs of a tumor. I focused on enjoying our trip, although worry lingered in the back of my mind.
O’Hare airport was eerily quiet when we landed back in the United States in mid-March, when the country was beginning to lock down. I had a phone consult with my doctor a couple of days later.
My local hospital seemed almost abandoned when I arrived a week later for an ultrasound. Soon after the ultrasound, the technician who performed the ultrasound was on the phone to arrange for an immediate CT scan. Then she walked me over to the office, while we chatted about how she wanted to move to New Zealand. I knew this wasn’t a good sign.
Standing by myself in an empty examination room, I was told over the phone that I most likely had ovarian cancer.
When I didn’t hear back from a local surgeon’s office within a couple of days, I contacted the Mayo Clinic in Rochester, Minnesota (a few hours south of me), and was able to schedule surgery for mid-April. New pandemic protocols were in place after a temporary suspension.
During the surgery, my uterus and other body parts were removed, including my 2 grapefruit-size ovaries. I was diagnosed with high-grade, stage IIIB ovarian cancer, which is classified as serious, because it had spread outside the pelvis to my stomach. My surgeon confidently told me that she had removed it all, and that I should let her know if I have any symptoms.
Pandemic, Circle of Support
Beaming in on FaceTime, my husband’s voice echoed across the distance. Not being allowed to have visitors because of the pandemic was not a great hardship, because I did not feel well enough to talk most of the time. One of the nurses excitedly pointed out the sunrise each morning over the Rochester skyline, just like my husband does at home, except that our view is of an expansive Lake Superior.
When I got home, my husband projected confidence while waiting on me. Friends brought over homemade facemasks and hand sanitizers. Others dropped off wine, chocolate, and flowers, and waved at me through the window. My daughter brought herbal supplements and teas. My son called from New York City, where he sequestered in his apartment for months.
Members of my church congregation prayed for me. My book club sent cards. I had Zoom calls with my sisters. When the weather got nicer, I enjoyed hunting for Lady Slippers with my 8-year-old grandson. I met a friend at an outdoor cafe, and sipped hot drinks surrounded by sunflowers.
My chemotherapy treatment involved 6 sessions done in 3-week intervals, at a local clinic. My blood pressure plummeted within the first 10 minutes of the first infusion. After that, the infusions were slowed down, which meant that each session lasted 8 hours or more, sometimes past closing time.
The treatment also included blood work, an oncologist visit, and pharmacist orders before the actual injection of the chemo could begin. Invariably, there were delays. I was often the last person in the clinic for the day. Uncooperative veins, usually toward the end of the chemo treatment, led to pain and frustration. I learned to anticipate when this would happen, and I would request that the infusion be slowed down (“put that in my chart, please,” I requested).
The nurses recommended that I have a port inserted under my skin to facilitate the infusion. I decided against the port, because I did not want to delay swimming in a Minnesota lake. Summer is short here; I had no time to waste.
The side effects of chemo were unpleasant, but usually lasted only about 1 week after each session. The side effects included fatigue, stiffness, brain fog, constipation, and hair loss.
The hair loss bothered me more than I thought it would. When large clumps started falling out, my husband shaved my head. I felt the stigma of being marked as a “cancer victim,” whether I embraced that identity or not.
Genetic Counseling: Family Tree
I returned to the Mayo Clinic to have genetic counseling and testing. My genetic counselor told me that only about 1% to 2% of women in the United States have ovarian cancer. An estimated 20% of ovarian cancers are hereditary, because of a genetic mutation that can be passed from a parent. So I constructed a medical history family tree with the help of my siblings. Both our paternal grandparents had died from cancer in their late fifties. My older sister had colon cancer in her early fifties, and her cancer is in remission.
The genetic counselor told me that because my 2 parents grew up as only children, my family tree was too slim to detect a clear hereditary pattern.
I had a genetic blood test to analyze different genes associated with hereditary cancer. The result came back negative, meaning that I had no known genetic mutations. This was good news, because it decreased the cancer risks for my siblings, my children, and for me. However, there are likely gene mutations that are not yet known.
“Give Me My Chemo”
After the first few chemotherapy treatments, the sessions were delayed for up to 1 week, because my blood tests showed low levels of platelets. My husband and I wanted to vacation with our son at our family cottage out of state before the weather turned cold.
It was ironic that I was so upset about having my dreaded chemo sessions delayed. My friend told me a story about a woman who was so agitated about her chemo session delays that she yelled, “Give me my chemo” in the doctor’s office. I felt the same way.
On the day that was to be my last infusion, a nurse approached me with the bad news that my platelets were low again. She then called the oncologist to see if I could have it anyway. She came back and said, “They want you to have it.”
The very next morning, we packed up the car and headed out to the Berkshires, in Massachusetts. We enjoyed brilliant fall colors, warm fires, and peaceful kayak paddles there.
My First Remission?
When we returned home, I saw my oncologist, who told me that the cancer was in remission. No further treatment was recommended, except for follow-up check-ups every 3 or 4 months for 5 years.
A few days later, my bubble burst when a pharmacist asked me if this was my first remission. No one had talked to me about life expectancy, only that it would be 5 years before I would be in the clear. A nurse at the Mayo Clinic had referred me to the website of the Minnesota Ovarian Cancer Alliance (www.mnovarian.org). I read that the rate of 5-year survival for women with ovarian cancer was 52%, meaning that 52% of women with ovarian cancer would survive at least 5 years. I’m optimistic.
In so many ways, I have felt fortunate during this process. I have excellent health insurance and access to high-quality care. Despite the pandemic, I navigated the system to get the help and support I needed.
Unwanted Club Members
A childhood friend joked that she and I are members of a club that no one wants to join. We didn’t know it was there. We don’t know if, or when, the cancer will come back. I could not control either cancer or the pandemic, but I can shape how I respond and live today.