A budget director accustomed to reading spreadsheets, Mary found that after her ovarian cancer diagnosis in 2009, she could fortify herself with immersion in the data that related to her prognosis.
I was generally pretty fit and healthy, and thin. But shortly before turning 60, I noticed at one point that my skirts were getting too tight. I was feeling run down and my throat was kind of sore, so I thought maybe I should get it checked out, but it was budget season, so I attributed it to stress. It also seemed that I was hungry all the time but felt full after a couple of bites. Something was off, but as I had gotten a clean bill of health just six months earlier, I really wasn’t too concerned.
When I saw my internist, she asked if I had ever had fibroids. I had when I was in my 40s, but she thought she felt one now and sent me for an ultrasound. As I was lying there watching the screen on the ultrasound, the images presented in garish colors. But I knew there was no point in asking the technician for an explanation. The look on her face was telling.
There was clearly a mass there, but when I spoke with the doctor later, she said it was impossible to tell if it was anything to worry about. She ordered a CA-125 blood test, to see if there was any indication of cancer, but the results were in the normal range, maybe slightly elevated for someone my age, but totally normal. Still, my doctor thought that the tumor should come out and set me up with the next available surgeon.
Not so Fast
A couple of days later, however, I got a call from my gynecologist who said she would like me to be seen by director of gynecology and gynecologic oncology at a nearby hospital with top cancer credentials. Luckily, the surgeon had a cancellation and could see me a week later. He ordered more tests and asked about a family history of reproductive cancer, of which there was none, so I was prepared for the mass to be benign. He scheduled me for a hysterectomy and bilateral salpingo-oophorectomy. They would spill my guts onto the table (something I discovered after reading the post-surgical report), examine my organs, and biopsy the tissue.
A mixture of good news and bad news ensued—the tumor, though large at 16 mm, was contained in the ovary. There was no evidence of anything spreading—he rated it stage 1A—but qualified it as clear cell carcinoma, a fast growth cancer, so I should go to an oncologist and discuss whether to have chemo. That was a lot to take in, and not at all what I was expecting.
After a few weeks of recovery from the surgery, I underwent six rounds of Carboplatin and Paclitaxel, the standard treatment for most gynecologic cancers, and tolerated it fairly well. I scheduled infusions on Fridays and was back at work on Mondays. Working provided a great distraction. I was so busy I wouldn’t even think about cancer for five days at a time during office hours. Work was a real blessing To be distracted a few hours a day, helped calm my anxiety.
Looking at the Data
Since I’ve always been interested in medicine and felt comfortable reading scientific studies, I determined to study medical abstracts in order to research my cancer to understand my prognosis. It was very important for me to be clearheaded and realistic. At the time, ovarian cancer recurred in 80% of women and eventually killed them. Clearly the fact that my doctors caught it when it was 1A meant I had a better prognosi., But clear cell is not always responsive to chemo. The cancer cells grow in a honeycomb pattern and are very tightly packed, making it difficult for the chemo to get in. At one point, I asked my oncologist, “What was the longest period between initial diagnosis and recurrence?” and he said 30 years. I was sorry I had asked.
But he assured me that I wouldn’t even be thinking much about my diagnosis after four or five years, and he was right. In the early days, I would wake up each day and say, “Well, I’m alive
. I’m not dead. And with each passing anniversary of my diagnosis, I started to feel more and more optimistic. But every time I got the blood test in the early years, my anxiety about the possibility of a recurrence would briefly spike.
In what became a ritual for me, a few days after each test when I knew the results would be in, I would pour myself a scotch, take a couple of sips, sign into the hospital patient portal and click on the results. If the CA125 results were on the downward trend, I would feel great for the next few months, until it was time for the next test. Initially the marker went up (in fact the CA125 reading in the aftermath of surgery was substantially higher than when I had been living with the tumor) but then it started trending downward. I plotted it on a logarithmic scale, but it was never a straight line—it bounced around a lot. CA125 is an imprecise marker and is sensitive to inflammation which can have origins other than cancer.
Keeping It Together
I’ve always been rather independent, and I didn’t really need a lot of support while going through this. My son was off at college and my mother and sisters lived several states away. So, it was just me and my husband. For me, that was okay. I feel a serious illness is ultimately
I didn’t really see any point to rue my fate. And I didn’t want to worry my son. I told him I had cancer but that it was in an early stage and that I was going to go through chemo. I assured him it was not something he needed to be thinking about right now—maybe if I had a recurrence, but not now.
While I think my situation upset my husband more than he let on, he pointed out that we tend to be more terrified of a cancer diagnosis rather than the implications of cardiac disease or other things that creep up as we age. And he was right. I am otherwise healthy and not a candidate for a heart attack or a stroke, so we could just see how this would play out. With most cancers, one has the luxury of time to adjust, and if necessary, say farewells.
When my oncologist would ask how I was feeling, I would quote Dickens—”It was the best of times, it was the worst of times.” A Fatal disease really focuses you on what is important. When I would be reading medical abstracts, I would experience incredible flashes of sadness that I wouldn’t see my son grow up and maybe have a family. It wasn’t fear of dying, it was just sadness at the loss of what might be. Which made me happier when he was home. We really had some joyous times together. After living through a cancer diagnosis and chemo, you gain a useful perspective. The intensity of the experience fades and you begin to wonder if it really was terrifying or whether you were carried by the human desire to live and the strange things that that does to the mind.
It’s now thirteen years later. I have surely repressed some unpleasant memories, and the whole experience has softened with time. Has it made me kinder, more tolerant? Don’t ask my husband! I live in the moment much more than I ever did and have redefined long-term thinking, which of course is inevitable with aging. As the years go by, our time on earth becomes shorter. Much like my serious illness did in 2009, I remind myself to make the best of the time I have left.