Teens with cancer wrestle with unique set of challenges
Published 5:00 am Thursday, September 29, 2011
- Alec Antonian, 14, center, hangs out with his friends at a football game at Wyandotte Roosevelt High School in Wyandotte, Mich. Alec has a brain tumor and is undergoing chemotherapy and other treatments.
DETROIT — Thick, gray clouds overhead churn up an ugly storm, but — as the Trenton Trojans try to hold back Wyandotte Roosevelt High and cheerleaders chant in pyramids nearby — Alec Antonian and his buds are cracking up, remembering his birthday in June.
Make-A-Wish Foundation had given Alec, who turned 14, a pop-up camper. He and friends spent that night outside, making jokes, setting off smoke bombs and filling disposable cameras with memories.
“We mooned them in our boxers,” Alec says of the cameras, grinning.
There’s no reason a visitor would know about the high-grade astrocytoma — a mass of abnormal, star-shaped cells — intermingling with the right side of Alec’s brain. The patch of hair he has left after chemotherapy and radiation is worked into a funky mohawk. Scars from drainage tubes have faded.
Like others his age who have been diagnosed with cancer, Alec seems too old for pediatric wards, where other patients are often too young to even grasp their diagnoses, but he seems too young for oncology centers for adults, where patients draw from life experiences to cope. And that means teenage joking and a blunt outlook.
“It sucks, but I gotta do what I gotta do … chemo and puking,” Alec says.
Toni Spano, a teenage-cancer survivor and a social worker at University of Michigan’s Comprehensive Cancer Center, says, “It’s very isolating. (Teens) are caught in-between and floundering.”
Even in the best circumstances, teens are in the most awkward stage of life, eking out independence, testing social norms, sorting out their future and constructing an identity.
Just as adolescents’ self-esteem and sex drive kick into high gear, lifesaving cancer treatments send acne into overdrive and high-dose steroids sometimes pack on pounds. Ports for chemotherapy might protrude under T-shirts, and scars and bandages attract awkward stares.
The most outward effects of chemo kicked in for Azhane Young, now 13, the night before her first day of seventh grade last year at Southfield’s Pace Academy. Her mother, Tamorraw Walker, offered to braid her daughter’s hair.
Instead, it fell out in clumps in her hand — the result of treatment for acute lymphoblastic leukemia.
Walker rushed to the store for supplies, and by the next morning, Azhane had a full head of hair glued onto a stocking cap — something she revealed only to friends.
“I don’t want to be treated any differently — not any better or worse, not different at all,” she said.
Still, by the end of the year, the heat of a packed classroom was unbearable. So were the whispers and suspicion. So Azhane, who is still in treatment, visited each of the seventh-grade classes.
“She said, ‘Yes, I have cancer. Yes, this is a wig.’ Then she just snatched it off her head. It was a big tearfest,’” her mother said.
For many, the teen years are already full of drama — who is dating whom? Who’s going to the game? Who’s going to the mall? A teen with cancer wrestles with questions about mortality or future fertility.
Even under the Friday night stadium lights, Alec’s dad, Mike Reynolds, is nearby. Reynolds, a Norfolk-Southern railroad train master, keeps his distance, giving space to Alec, who just a few years ago played competitive soccer. But that doesn’t stop Reynolds from glancing at Alec every few minutes to make sure his son isn’t rough housing — the kind of activity that could lead to deadly bleeding or swelling inside his skull.
“I hate doing it, but you worry all the time,” Reynolds said.
In addition to everything else, teens with cancer wrestle with what Heather McKnight calls “role confusion.”
“They were just starting to launch, to be on their own, and now they’re sick and they’re dependent on their parents,” says McKnight, a pediatric oncology social worker with Beaumont Health System. “Teenagers want the privacy. To be in their room with their door closed. Now they’re in the hospital with people in and out.”
For some, even the most well-intentioned friends dwindle, consumed in their own lives and even frightened. The isolation can be excruciating, says Jane Deering, a social worker at the University of Michigan Cancer Center: The teen years are “all about where are they going and where are their friends going. But what happens if you’re not going anywhere, and you’re home going bald and throwing up?”
Still, years after University of Michigan’s Spano felt so alone with her cancer, things are changing.
Websites, support groups and blogs offer an in-your-face, smack-down fortitude empowering a generation of cancer patients who used to feel forgotten.
“I isolated myself a lot. I didn’t talk about it,” Spano says. She was an outgoing, social teen until doctors diagnosed the lump on her neck in 1989 as Hodgkin’s lymphoma. When she did venture out with peers, it was awkward, even painful.
One time, someone poked her good-naturedly in the abdomen right after a surgery: “Where ya been?” It took all her strength not to double over in pain, Spano said, adding: “I tried to act normal and act like nothing was wrong.”
As teens find strength in each other online, even with things they can’t share with their closest friends, the fight can be refreshing.
Labeling your cancer or nonmalignant tumor can be empowering. Laughing with others about the awful side effects of treatment — even just finding that you’re not alone in those darkest moments — can be liberating, says Catherine Blotner, 16, a student at Detroit Country Day School who has a nonmalignant brain tumor. Catherine is a frequent contributor to the blog masskickersfoundation .blogspot.com.
When she writes to faculty at her school, Catherine tweaks the capitalization. mAsskickers becomes Masskickers — a change less likely to rile a more conservative reader.
But when she’s wearing the T-shirts and handing out stickers to a younger crowd, the “A” is more pronounced. And she finds that phrases like “Tumors suck” invite conversations that she might not otherwise have with other teens.
That’s when she tells them about what has become a common theme behind mAsskickers: “There are three things you can do with cancer. You can dive. You can survive. You can thrive.”
The first and second gives cancer the upper hand, she explained. The third? “You embrace your cancer. You accept it and you find the positives in it,” she said. “That’s when you decide to fight.”