Jane, a self-employed writer, book editor, and actor, was 58 when she was diagnosed with cervical cancer. Anxiety over insurance and paying for care complicated her recovery, as did the simultaneous diagnosis of a dear friend.
I had already been through menopause and wasn’t getting annual Pap smears, but when I went for one in 2015 it was irregular. So I got another, and another, and then an ultrasound. Eventually I learned I had cervical cancer. It was stage 1B1—not very advanced—and my doctor said there was generally an 85% success rate with either radiation or hysterectomy in cases like mine, so it was my choice. I was 58 at the time, so the issue of having children was moot. For a younger patient, it’s a more difficult decision, but I didn’t need my uterus. The doctor didn’t make the decision for me, which I liked. He just explained the pros and cons and let me decide. I chose the surgery, which he was able to do laparoscopically.
I had a modified radical hysterectomy. My doctor took the uterus, cervix, ovaries, tubes, and some lymph nodes. He got clean margins the first time, which was a reassuring report to get. I feel bad for younger women for whom the ovaries and uterus are still important; I wasn’t sentimental about mine. For me, it was about doing what was necessary to stay alive. I had no chemo or other treatments beyond the surgery.
My first thought on hearing the diagnosis was an instantaneous “I don’t want to die.” Shortly after that, I thought, “Be strong; you can get through this.” My mother had died of lung cancer at age 83, so cancer was not an unknown thing for me, although this was different. My experience with her death informed my own response; she handled her cancer with grace and dignity, and I wanted to try to do the same. Still, when I was diagnosed, I was scared.
I had already faced the “I don’t want to die this young” issue once before. I had a brain aneurysm in 2000 and was incredibly lucky not to be left with any damage after the surgery. Knowing that I had cheated death once before, this diagnosis wasn’t so hard to take. I thought “I’ll get through this or I won’t. All I can do is be glad I have a good surgeon, health insurance, and family and friends who care that I live.”
I was on two parallel paths. One path was practical and logical: I had a great surgeon, so there was no point in freaking out about it. But the other path was emotional, where I was worried and hoped we had caught it early enough—hoped I could get through the surgery and stay healthy. I believe that a positive attitude helps your health. You don’t choose how you feel, but you can choose what you focus on, so I cried a little, but then I got to work and did some research. Would I need a catheter? Would I be able to have sex again? It doesn’t mean I wasn’t scared, but I put my attention on keeping positive and dealing with one thing at a time.
Silent Side Effects
Some side effects were more discomforting than the surgery. One of the doctors taped my eyelids shut during the operation to prevent dryness. Apparently this is standard practice. But they took the tape off too soon and I ended up with dry eyes and corneal abrasions, which were astonishingly painful. This minor mistake kept me in the hospital for an extra night, which the hospital wouldn’t pay for, even though it was a medical error.
Then my lymphatic system went haywire: I had gallons of fluid draining from my incisions daily and had to use an ostomy bag. My surgeon was blasé about it; he said it would go away in a few days, but seven months later it was still dripping. He had been so clear about the surgery, but he failed to warn me that this lymph problem might happen, and it took a great deal of prodding from me to get him to research ways for me to handle it. Consultations with a nutritionist, who prescribed a modified diet, eventually helped. I wish the doctors had been more sensitive to the side effects of the surgery. The procedure saved my life, which was the truly important thing, but a hysterectomy can result in all kinds of side effects—including leaking lymph, painful sex, blood clots, and damage to the urinary tract—which definitely affect the quality of life as the patient recovers.
Prior to my diagnosis, I knew I had HPV. My gynecologist had at one point frozen off some cells to deal with it, but in the back of my mind I had thought maybe it would become an issue. This fed into my guilt about not always getting regular exams. I should’ve known better. Being on the pill hadn’t protected me from getting HPV, and there was no vaccine when I was young. I felt it was at least partly my fault; I should have been vigilant about never missing an annual Pap smear. But focusing on the guilt doesn’t help.
Waiting for test results is always nerve-wracking; I don’t think I’ll ever be free of that specific anxiety. There is still that thought: “Well, these results are just for these three months.” One little cell could change everything. That worry sticks around.
Dealing with insurance was also anxiety inducing. I was self-employed and couldn’t work for a while, and I couldn’t trust the accuracy of my work while I was on painkillers, so gaps in my insurance coverage meant I had a significant need for cash, which constantly added to my stress. The insurance billing process itself was incomprehensible—What’s covered? What’s not? I couldn’t make it out, so I just paid it. How do people who have even less experience than I do in reading complex documents deal with it? It didn’t turn out to be devastating, but it was certainly an issue. It can cost gazillions to have cancer and a hysterectomy, and my hospital was not particularly helpful about arranging a payment plan.
Friends Helping Friends
I live alone but have close friends who all offered to help. One basically moved in for two weeks while I recovered. But he was so terrified of losing me that I had to be careful about crying in front of him. Certain people you can talk to and others you can’t. A close female friend was the person I opened up to the most; I could cry in front of her about my worries and fears. Although I didn’t feel tremendously vulnerable compared to when I had the aneurysm, that feeling came through at odd moments.
I learned something while I was a patient. It’s more helpful for friends to say, “I suggest I do X; is that okay?” rather than ask “What can I do?” One friend said, “I’m going to clean your bathroom; would that make you feel better?” That was great. It’s so much better than asking a general “What can I do to help?” People don’t mind doing things—it makes them feel good to be able to help—but patients are often uncomfortable asking for specific favors.
About the same time as I got my diagnosis, someone I dearly loved was diagnosed with an incurable neuroendocrine tumor that affected his brain. It was as though he had Alzheimer’s. He lived in Boston and I would go up to take care of him and be with him. I would tell him what was going on with me, but he couldn’t remember. It was surreal.
I was much more upset about his situation than about mine. After my surgery, I needed to be strong because I had to keep getting back on the bus to visit him. I was very grateful to have that time with him. It helped me to focus on him, and it put my situation in perspective. But I learned that I would rather be the patient than the caregiver.
The Quality of Life
As a result of my experience, I’m more aware of how prevalent cancer is. At a recent musical event, eight friends from high school were sitting at a table, and seven of us had had cancer. We were all around 60 years old, so it wasn’t unusual, but oh my gosh. So many people have much more serious cancers than mine, so I have no cause for self-pity. I still wish my doctors had talked to me earlier about HPV, and that they’d been more sensitive to the side effects of surgery. But I can’t change what happened, so I might as well not focus on the past.
When I was young, cancer automatically meant death, but it doesn’t anymore. So many people have survived cancer. I survived a brain aneurysm and had an easy cancer, so I see myself as tremendously lucky. I’m aware of the possibility that that could change. A new cancer diagnosis would be much more threatening. But if you spend your life worrying about death, you’re missing your opportunity to live; then where’s the quality of life?