What does it mean to have cancer in the prime of life?
It means you take a slower, more thoughtful journey than most of your peers, Leah Shearer says. It means learning patience and taking nothing for granted.
Shearer, 34, coordinates Teens Living Cancer, a program of Melissa's Living Legacy Teen Cancer Foundation. The teenagers who come to TLC's events are dealing with all the issues related to the disease-from the side effects of treatment to the social stigma of having a serious illness. It's also a place where they feel understood. No longer children and not yet adults, they're often the oldest patient in the unit during hospital stays, and they're too young for adult support groups.
"In our culture, illness is a barrier from other people," Shearer says. "There's this dark shadow around people who are sick. Sadness comes really from isolation.
"Once they have a place to put their feelings, they're so able to express themselves."
Melissa's Living Legacy was founded by Lauren Spiker to honor the memory of her daughter, who died of cancer at the age of 19. A few days before she passed away, Melissa Sengbusch challenged her mom to do something positive with the experience.
Shearer met Spiker roughly four years ago when Shearer was heading up a local chapter of I'm Too Young for This, a support group for young cancer survivors. It was the first in-person chapter for the Web-based social group. Shearer founded the local chapter after a fruitless search for a support group for people her own age.
Shearer has battled cancer twice. Eight years ago she was diagnosed with thyroid cancer; a doctor told her and her parents he had never seen such an advanced case of the disease. Forty lymph nodes were removed; half of them tested positive for cancer, and the disease had spread to the muscles of her neck. Shearer went through surgery, many hours of physical therapy to learn how to talk again, radiation treatments and an unwieldy contraption for lymph node swelling.
"The sleeve for neck lymphedema looked like a ninja mask," she says, and laughs. "I wore it at night. It was one of those things where you kind of laugh and cry at the same time."
Shearer found out she was sick in the fall of 2004, shortly after joining the Livingston County News as a reporter. A graduate of St. Bonaventure University's journalism program, she was looking forward to a career in news.
After her cancer treatments, she freelanced for awhile "trying to get back into life," but was hit with another blow: 16 months into remission, another cancer diagnosis, this time for Hodgkins lymphoma.
"The prognosis was really good, but it was hard to convince me of that," she says. "I'd never heard of anybody who'd ever survived two forms of cancer."
Shearer endured six months of chemotherapy and eight weeks of daily radiation treatments. This time, after she regained her strength, her inner advocate emerged and she started seeing a new way to use her skills in writing and communication.
"I choose to view (cancer) that it has given me a perspective and knowledge to help that I wouldn't have had otherwise. It's forced me to a different path," she says.
Shearer's medical adventures began when she was a teenager. When she was 14 and active in sports, she was diagnosed with chronic fatigue syndrome and home tutored for most of her high school years. The isolation felt by some of the teens in her group now is something she remembers well.
"Their illness does not make them any less effective in things they want to do and dreams they have," Shearer says.
Her job comes with sadness. Adolescents do not fare as well in cancer outcomes as other age groups.
"We lose some of our incredible teenagers," says Shearer, who visits group members in the hospital. "I know that it makes a difference. But that's a hard part of this."
To connect teens undergoing treatment in the hospital with their peers in TLC gatherings, the foundation received a grant for four iPads to loan out during hospital stays.
For teens regaining their strength, TLC launched TLC Fit, a nine-week fitness program that is the first of its kind in the country. The University of Rochester has joined TLC Fit as part of a research study, and the program is being replicated in Washington, D.C. Most teens with cancer get little if any information from their doctors on how to be active, Shearer says. Nine kids at different levels of ability and fitness took part in the first offering.
"Every one of them at the end was motivated and setting goals," says Shearer, who worked out along with the teens.
It was during a TLC Fit run that trainer Mary Eggers proposed the idea of challenging seven-time Tour de France champion Lance Armstrong to a race in the pool. He accepted her Twitter challenge, and the race last month in Buffalo raised more than $50,000 for TLC and Live Strong in Western New York. TLC teens and their families had front-row seats.
TLC also is raising money and awareness daily through May 18 with Melissa's Million Dollar Hole-in-One Contest. From 11 a.m. to 8 p.m., golfers can test their skills at Henrietta Town Park and Dyer Straights Driving Range in Honeoye Falls.
Another TLC program promotes peer understanding. A recent book club brought together teens who have cancer with those who don't to stimulate discussion about what it's like to deal with the disease.
"It helps remove the stigma," Shearer says. "Teenagers don't know what to say, so they say nothing."
To that end, Shearer gives talks to high school assemblies. A couple of weeks ago she addressed about 400 students at Fairport High School; three students there are going through treatment.
Public speaking is not something Shearer could have seen herself doing before she felt the need to advocate on behalf of teens.
"That has markedly changed in the last couple of years," she says. "I think when you're passionate about something your voice kind of rises."
In many ways, cancer shaped her life, she says, keeping her from taking the pick-up-and-go approach that leads many 20-somethings to their passion. Certainly a job with health insurance benefits became a necessity. For years Shearer worked as a teacher's assistant at the Norman Howard School and worked five to 10 hours a week for TLC. Last summer, she took a break from TLC and went to Colorado to dog-sit and soul search.
"I couldn't make the leaps and risks that you sometimes take in your 20s," she says. "I was working two jobs and it was really a chance for me to get breath back in my life."
The break, which included a hike up 14,000-foot Quandary Peak, renewed her commitment to teens who have cancer. Her job at TLC was expanded to full time, and she returned to Rochester with a sense of purpose.
She says the trip served as a reminder of what her peers told her two years ago in giving her the inaugural Emerging Leader Award at ROC City Rising. The award was a complete shock, she says. At the time she felt she was treading water, not getting anywhere in her adult life.
"So many people who are young and diagnosed with any kind of debilitating illness, it really makes you feel left behind your peer counterparts," Shearer says. "That was really a lesson for me. I'm going the speed I'm supposed to be going."
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Fast Start: Through cancer, she found her voice
What does it mean to have cancer in the prime of life?