A Family Cancer

Kerry missed more than 100 days of school that year, yet managed to pass the exams that allowed her to move up to eighth grade. She spent three years either on crutches, in a wheelchair or walking with a cane. Her final surgeries included a total knee replacement and the removal of yet another failed bone graft. A steel rod was inserted to replace the bone, to provide the stability that would allow her to walk unassisted. But her dreams of track stardom were over: she never ran again.

Instead, she worked as a stage manager for school plays.

At first, friends distanced themselves, and she was teased by certain schoolmates. But in time, those friends reconnected, and the teasing ebbed– sometimes with the help of threats from Kerry’s younger sister Eileen, but mostly as the notoriety of the disease wore off.

Kerry’s doctors were optimistic that her bone cancer was gone for good. After she graduated from high school, he left behind the students who knew her only as “the girl who had had cancer.”

Cresting the Hill – and Seeing the Alps Ahead

She enrolled at Clarion University, near Pittsburgh, and took up a dual major in sociology and psychology. Clarion was a quiet little town: the biggest thing going on there, besides college activities, was the annual Autumn Leaf Festival.

Kerry quickly formed a strong friendship with her roommate, Sarah Weiss. They spoke briefly before moving into their dorm room together, so Sarah wouldn’t be surprised by Kerry’s pink and black hair, or the intense scar on her leg. During their freshman year, the roommates attended numerous underground punk concerts – 70 in all. The following fall, both girls started relationships with young men at Mansfield University, several hours away, and the friends visited the campus on weekend trips. It felt like a smooth entry into college life — and the rest of Kerry’s college career looked promising, too.

But back home in Athens, Maureen, the other twin, began complaining of back pains. One weekend while their parents were away, Maureen began to cough up blood.

“Don’t tell Mom. Don’t tell Mom,” Maureen begged her sister. Kerry remembers that plea vividly. Maureen, then 18, hadn’t wanted to upset their mother. But after doctors found a tumor the size of a block of Velveeta cheese in her abdomen, it grew clear Maureen had been hiding other symptoms – other pains, and swollen lymph nodes. Doctors tried to operate and use chemotherapy, but eventually had to admit to the Higgins family that Maureen was going to die.

Kerry got that news over the phone. She’d been driving up from Clarion to visit her sister, and was just a block away from the hospital when Eileen called.

Kerry sat in the car, and willed herself not to cry. She walked into Maureen’s room and hugged her. After Maureen said she needed to use the bathroom, the family stepped out. During the five minutes they were standing in the hall, Maureen suddenly went into cardiac arrest. She was placed on a respirator. Three days later, she died.

Maureen’s death angered Kerry, and also made her aware of what a tough thing she’d survived.

“It never occurred to me that I could die of cancer when I was 12,” she said later. “When I found out I had it I just thought, ‘OK. Fix it. What do you have to do?’ I started to get pretty pissed off when Maureen died. It bothered me a lot that I could survive, and she couldn’t.”

The family pattern was growing grimly clear. Kerry’s aunt, her father’s sister, had died at 33, after suffering from cervical cancer, breast cancer, and a rare form of leukemia. Her paternal grandfather had succumbed to a brain tumor when he was 38. And now, they’d lost Maureen. The three generations of early deaths made doctors hypothesize that the cancers were genetic.

Unfortunately, they were right. After Maureen’s death, Kerry received her own diagnosis of Li-Fraumeni Syndrome (LFS). By causing a crippling mutation in an important anti-cancer gene, LFS leaves carriers susceptible to numerous forms of cancer. Though the diagnosis did not guarantee that Kerry would develop more cancers (human bodies have other ways of protecting themselves), it made it highly likely.

Although LFS is hereditary, Kerry’s father and Maureen’s twin Eileen have so far escaped unscathed. Based on his family history, doctors assume her father carries the mutation, though he’s never been tested. Eileen has tested negative.

After the diagnosis, Kerry’s psychological approach to her health shifted. She’d just begun believing that her struggle with cancer was over.

“There was a tumult of emotions – thinking you’re coming to the end of the road and realizing it’s just the beginning,” she said. “You’re coming up to the top of the hill and you’re realizing it’s the Alps behind it. This is only the first mountain of how many?”

There was nothing Kerry could do but face her prognosis, and keep climbing. She routinely met with specialists who checked every inch of her body.

Within months of beginning this precautionary regimen, a breast MRI revealed a small abnormality in her mammary duct. A biopsy indicated it was malignant. A lumpectomy was performed, and based on the findings, doctors began to doubt that they had gotten all of the cancer cells. Kerry’s lymph nodes remained cancer-free, so, rather than risk the cancer spreading outside of the duct, she and her doctors decided on a double mastectomy.

“I was 22. I was single. My breasts were a big part of my self-image,” Kerry said. “I think that was the really horrifying part; I was going to be damaged goods from there on out.”

“She was always very nonchalant about things,” recalled her former roommate Sarah, who had moved to California by the time Kerry was diagnosed with Li-Fraumeni, but kept in touch by email. “She’d say, ‘This is what’s happening and it kind of sucks, but I’m going to get some nice government boobs out of it.’”

That was her way of saying that Medicaid paid for the portions of Kerry’s surgery not covered by pro bono offers: Kerry was insured only by Medicaid while she was in college.

By the time of the mastectomy, Kerry had come to terms with what needed to be done. She even joked with the surgeon as she drew her gown aside, so incision contours could be marked on her breasts.

“Reminds me of how I’ve gotten through college,” she quipped.