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The Fear of Recurrence: Cancer’s Evil Twin

Posted Oct 20 2011 4:33pm
A month after I was diagnosed with breast cancer, I got a bone scan. I thought the hard part was...

A month after I was diagnosed with breast cancer, I got a bone scan. I thought the hard part was going to Nuclear Medicine and being injected with a dye that made me so radioactive I couldn’t stand near newborn son for 24 hours. Then my oncologist called.

“We found a spot on your sternum,” he said.

“What is it?” I asked frantically.

“We don’t know yet. Did you have an accident when you were younger? Did you ever fall off your bike? Those kinds of bumps can leave a mark.” My head was spinning: I am thinking about terminal illness, and he’s talking about bicycles?

“No, I never had an accident. How will we know if this is cancer?”

“We wait and see,” he said quietly. “If it is cancer, it will start to hurt.”

I learned something in that moment: I learned to fear. I learned to read every pain, every scan, every checkup for signs my cancer had spread to another part of my body. And when breast cancer metastasizes, there is no cure.

These fears didn’t end with treatment. They persisted for years because the danger did. After I finished radiation, friends and family looked at my stubbly hair and assumed I was all better. I had to remind them through gritted teeth that my oncologist wouldn’t call me cured for ten years.

People think chemo is the worst part of getting cancer, and yes, being bald, bilious, and menopausal was awful. But those physical trials paled in comparison to the mental challenge of managing fear. I would parse every word my oncologist said and obsess over what he meant when he called my cancer aggressive. I would lie awake at night wondering whether the pain in my back came from carrying the stroller or having a tumor. I would read a news story about a celebrity’s death from cancer and wonder if it would happen to me.

This wasn’t hypochondriacism. It was realism.

Friends tried to brush my concerns aside. “You’ll be fine,” they would say. “You shouldn’t worry so much. We could all get hit by a bus tomorrow.” They meant well and they thought they grasped the fleeting nature of life with their freak-accident analogies, but cancer survivors don’t have the luxury of dealing in generalities. We have had been told by medical experts that we have a life threatening illness, and because of the limits of science, we must wait and see if it kills us. Or not.

So we learn to cope with fear. Almost every young survivor I spoke with had the same preferred method of managing terror: vigilance. We become hyperaware of our bodies and we scrutinize the slightest alteration for signs of cancer.

Michelle got cervical cancer when she was 26; it recurred two years later. “I would go into the doctor with a long list of all that was wrong with me and what I had diagnosed it as,” she told me. “My doctor told his medical students I could be an associate professor by now.”

Theresa didn’t wait for her doctor’s opinion either. After her first go-round with leukemia, she did her own self assessments. Once when she threw a party, she started feeling sick, which in turn made her frightened. She excused herself and ran her checklist in private:

First on the list is temperature. 98.8 degrees. This is acceptable. Next, pulse rate. 90. A little high, but sick-sick is 150, so I’ll take it. I check my fingertips: pink. Not anemic. Moving on, I check the skin on my lower shins, which is clear of those red freckles that mean low platelets. I lie on my back and take a deep breath in, and then out, with hands pushed under my left ribcage. No spleen. Nice. Having finished the checklist, I could now feel slightly more certain that my symptoms were unlikely to be those of acute leukemia.

The constant vigilance is exhausting. I felt drained by it, but it also made me tough. Over the yearsand the scares and biopsies and bad scan resultsI learned something else besides fear. I learned that coping with fear is a muscle, and mine got stronger. I worked it. I exercised it. I came to believe in it. I can face another biopsy because I have done it before.

Don’t get me wrong. I still get nervous waiting for test results and I still monitor my aches and pains. But I take comfort in the passage of timeevery year that goes by without incident lowers the chance of recurrenceand I know I can muscle through the fear and still live my life.

Emily Cousins is a writer and editor who was diagnosed with breast cancer when she was 32 and nine-months pregnant with her first child. She is currently writing a book about what it's like for young survivors once cancer treatment is over-when the radiation burns have healed and the hair has started to come back, but everything else is completely out of whack. After almost a decade living in New York City, Cousins now resides in Northern Arizona with her husband, son, and the daughter she was lucky to have post chemo.
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