By Jessie Scanlon
The Hot Wheels and Lego bricks strewn across our family room floor would usually have annoyed me. But that early spring evening the toys seemed to anchor me in the normal. I concentrated on my breathing and tried, mentally, to disconnect my facial muscles from my emotions. My daughter and son sat beside me on the sofa. Could my husband have been kneeling on the floor? Or standing?
“I have to have an operation,” I told my children with a smile that I hoped showed confidence. “It’s one that Grandma had 12 years ago, and that Aunt Sarah will have soon. I’ll be in the hospital for a week, and after I come home I won’t be able to drive you to school or pick you up or let you sit on my lap for a while.”
What I didn’t tell them was that I had breast cancer.
In the weeks since I’d been diagnosed with an almost matching set of invasive ductal carcinomas, I’d talked to friends and friends of friends who had been in the same situation or could otherwise give advice. Snippets of one conversation kept replaying in my head. “I was a basket case after my diagnosis…. I cried all the time…. My daughter slept on our bedroom floor for a year…. Years of therapy for the kids….”
I, too, cried often as I grappled with the diagnosis, but had managed to hide my tears from the children. My husband and I agreed that we would never lie to them. And we knew that eventually we’d tell them the whole truth. But I wasn’t convinced that it was necessary or even helpful, to scare them when my prognosis seemed good. Why burden them with the C-word?
I imagined my son Christopher telling a friend on the playground and hearing, “Oh – my grandpa died of cancer.” Could a four-year-old understand that that didn’t mean I was dying?
Many children, on hearing that a relative has cancer, ask if the disease is contagious. It’s not, of course, but a gene mutation had heightened my risk. It was why my mother had chosen to have a prophylactic double mastectomy, which my sister had now decided to do as well. Both children stood a 50% chance of having inherited my faulty gene, though the risk of actually developing breast cancer was greater for my daughter, Ella. So, no, cancer isn’t contagious, but …. Was a seven-year-old old enough to grapple with that?
Before the conversation, I’d met with a hospital social worker. “You know your kids best,” she’d said, and then sent me home with two backpacks, each containing a stuffed animal, a set of markers, and a workbook called “Life Isn’t Always a Day At The Beach” with fill-in pages like “If I could, I would put cancer in a rocket and send it to _______.”
I hid the backpacks in the guest room closet and continued to tell half-truths.
My hair began shedding after the second chemo treatment and this required an explanation. So as we sat around the dinner table one evening I reminded the kids about my surgery. “Now my doctors want me to take some medicine,” I told them. “You know how when you take Benadryl it can make you sleepy?”
They nodded. “Well this medicine has a funny side effect. It’s going to make my hair fall out.”
“Really?” Ella asked. I tugged a few strands from my head as evidence and then tossed the dead hair into the trash.
“Can I pull some out?” she asked.
“No,” I answered sharply.
Maybe I should have let her in – into my experience as a woman about to lose her hair.
Some cancer patients embrace their situation and hold head-shaving parties. A friend told me a quieter version: she’d helped a neighbor pull out her hair one spring day on the back porch, and as the tufts floated away in the wind, birds swept down to capture material for their nests.
But I took a different route. My hair stylist arranged for us to meet in the salon’s seldom-used men’s bathroom. A friend brought a bottle of Prosecco and three plastic cups and we toasted before he shaved my hair down to stubble. But it felt more like a wake than a party.
I cried when I looked in the mirror. I don’t know whether I cried from vanity or simply the shock of seeing my appearance catch up with the reality that I was a cancer patient. But I cried freely, knowing that the tears wouldn’t tarnish my maternal image, and then I went home and let the kids rub my fuzzy scalp. “Doesn’t it almost feel like a teddy bear?” I suggested. When my daughter won a cheap tiara at a fair later that summer, we snapped a picture of me wearing it, and laughed. Princess Chemo, I thought to myself.
I imagined that chemotherapy involved hours on the bathroom floor and Terms of Endearment-style drama. But I scheduled my treatment for the morning, took the anti-nausea drugs, drank gallons of ginger beer, napped, and most days was ready to be Mom by the time the kids got home from camp.
Ditto the 5 ½ weeks of daily radiation that fall. I’d shift from caretaker to patient only after making breakfast, packing lunches and dropping the kids off at school. When the kids asked why my chest looked so pink, I told them I’d forgotten to put on sunscreen.
I had crossed the line into dishonesty. My kids seemed fine – “They’ve weathered the year well,” I told those who asked – but I had lingering worries. So one November evening I went to a “Parenting Through Cancer” meeting at my hospital. Just as most exam rooms aren’t designed for the delivery of bad news, the conference room felt too dry for the subject.
Some of the women in the room had much scarier diagnoses than mine. All of them had been more honest with their children. I came home with two books – one for adults, the other for children – that, feeling emotionally depleted, I carelessly left on the kitchen counter.
The next morning, the colorful spine of the children’s book caught Ella’s eye and she opened Mom Is Getting Better. I tried to dissuade her, telling her that it was a boring story, but she insisted.
After a few minutes, she asked, “So did you have cancer mom?”
“Yes,” I told her. “Do you want to talk about it?”
“No,” she said.
When my husband and I agreed not to be completely honest with the kids about my diagnosis, I thought I was protecting them – that I was preserving their “normal.” And for the most part, my husband and I – helped by friends, babysitters, and my parents – succeeded. But I was also protecting myself, and an image of myself that I wanted my children to see: a strong, dependable, and brave parent who would be there to love and protect them.
Was I wrong not to tell them the whole truth? Perhaps. But I don’t regret our decision. “You know your kids best,” the hospital social worker had told me. But the truth is that I knew myself. And in those raw spring days, when I wore sunglasses to school drop-off and pick-up to hide my puffy eyes, I wouldn’t have been able to talk calmly about my cancer, let alone to calm any fears they might have had. First I needed to manage my own.
One winter morning as I was driving the kids to school, the radio tuned to NPR, a sponsorship message from the Cancer Institute of America came on. With every repetition of the word “cancer,” I resisted the urge to turn the radio off.
It droned on so long that my son, now five, said, “Blah, blah, blah. Who cares?”
“Chris! Mom had cancer. That’s why her hair fell out!” Ella said, in an exasperated big sister voice.
“Oh,” he said.
“Yes,” I replied, pausing at a stop sign, and then turning right. “I did.”