The struggle to acceptance
This newfound outlook does not usually come quickly. When their chaotic, day-to-day lives of school, friends, extracurricular activities, and family are first interrupted by a cancer diagnosis, most teenagers — like adults — are filled with a combination of emotions, none of them positive. That's not surprising, as one moment they're having trouble breathing or experiencing a curious sports injury, and a few days later they're sitting in a doctor's office learning they have a potentially fatal disease requiring immediate treatment. There is little time for reflection, but plenty for fear and anger.
Keith Reynolds, 22, has endured two bouts of acute promyelocytic leukemia.
"When the doctor came in and said, 'Keith, I have some bad news. You have leukemia,' I thought I was going to die," recalls Keith Reynolds of Taunton, Mass., who was forced to drop out of college at age 19 when his acute promyelocytic leukemia was diagnosed in 1997. "I had only heard about people who died from cancer, never the ones who got cured. The doctor was going through all the steps of my chemo treatment, and all I could think of is, 'Why me? I'm just a kid.'" Once this initial shock and frustration wears off, teenagers come to understand the implications of their illness. Unlike younger patients who can't fully comprehend the ordeal, adolescents treated at Dana-Farber are encouraged to play a full role in all decisions regarding their care. This means being present with their parents or guardians at all meetings between the family and medical staff, as well as helping in decisions about treatment.
"I think it's better to have this as a teenager," says 15-year-old Rebecca Karp, who discovered she had a rhabomyosarcoma (a tumor composed of striated muscle fibers) just one month after starting her freshman year at Beverly (Mass.) High School last fall. "If you get cancer when you're 3, it's all you know. Younger kids can't understand that this is not normal. Teenagers can."
According to Holcombe Grier, M.D., clinical director of Pediatric Oncology at the Institute, teens who are suddenly placed in this very adult-like situation must, for their own well-being, understand the importance of communication — even at an age when breaking away from their families is a far more natural temptation.
"I tell them flat out from the first day, 'Cancer always stinks, but at your age it really stinks,'" says Grier. "You're at an age when you want to keep things like aches and pains to yourself and live your own life, but you need to communicate these things to your family. You have to get them out in the open."
"There isn't a day I don't think about what I've gone through."
— Curtis Glavin
Grier also urges his teenage patients to expect their friends to be initially uncomfortable. "Friends won't know what to say," he warns. "Once kids have cancer, they are forever changed, but they are still the same people. It takes friends a while to understand that. It seems silly considering the situation, but I tell kids they really need to cut their friends some slack."
Some friends, Grier cautions, may not be able to handle the news. For Angela Jones (not her real name) of Dorchester, Mass., a 16-year-old junior in a Boston high school, a diagnosis of Ewing's sarcoma brought a rude awakening. "I thought I had friends, but everybody forgot about me," she says. "A couple of people in school found out what was wrong, but they didn't come around. My sisters were always there for me, but it was tough."
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