Fear of recurrence can linger years after diagnosis.
For many years after my diagnosis, the fall and winter months were hard to live through. My cancer-related anniversaries all fall in October, November and December. I was diagnosed with breast cancer on Oct. 15, 34 years ago. I watched my daughter take her first steps on Nov. 1, two weeks after I was diagnosed.
Thanksgiving came three weeks later. I had always loved cooking, but, quite frankly, I don’t even remember that Thanksgiving, except that the day before my husband shaved my head. I had started chemotherapy, and I am sure my family was around, looking at me with pitiful eyes. OK, I was pitiful — bald and with a mouth full of blisters that meant I couldn’t enjoy the food I could smell, and nausea that guaranteed I was a lovely shade of green.
Christmas, my daughter’s second, almost did me in. I bought her things she would not play with for years, mostly my favorite books as a young girl.
The looming question on those days and many others was:
Is this the last time I will do this? Would I be here the next year? Was this my last Thanksgiving and Christmas with my daughter?
When February arrived, the black cloud began to lift. Chemotherapy ended, and I bought a wig and went back to work teaching college sophomores that accommodate has two Cs and two Ms.
It took me years before I realized that in those early days, I didn’t know anything about what it looked like when cancer came back. I had just enough information to be dangerous. I can even remember calling my nurse at one point when I was sure I was dying and that the cancer was back in my spine. It really did hurt, but I chose not to look at what could be other causes, such as lifting a plant that was too heavy. Instead, I was focusing on the friend I talked to that week whose breast cancer came back in her spine. All of a sudden, my back pain was recurrence.
I asked my nurse for a bone scan and she set one up. When I went in to get the results I was sure I was dying. My back was worse, and I had told my husband it was just a matter of time. When the nurse came in with the results, she said, “Everything is fine, why did you want this anyway?”
I could feel myself unclench my back as my husband said, “Don’t ever do that to me again.”
As time passed and I learned more about the realities of metastatic disease, I was somewhat reassured. I still had those panic attacks that sent me to the oncologist for blood work, and the causes are still the same: if a friend has a recurrence, if a famous person is diagnosed, or if I have an ache or pain that does not go away in a few days.
We all have to find our own timeline to stop worrying. I remember specifically my visit on the 10th year of survivorship. I saw my oncologist on an annual visit and said, “Guess what today is.” He replied that it couldn’t be five years, so it must be 10.
“When can I stop worrying about it coming back and killing me?” I asked him.
“When you die of something else,” was his reply.
So, I continue to be wary of strange aches and pains or another symptom of recurrence, but I have to admit that most of the problems I have now are from aging.
Oh, and my daughter, who I thought I would never see grow up, lives in New York City and celebrates her 33rd birthday this month.