April 24, 2014 -- It took Matthew Zachary seven years after his diagnosis to meet another 20-something with cancer even though more than 70,000 young adults are diagnosed with cancer every year.
He vowed to make sure no one else felt alone like he did.
“I had no life. I had no job. All my friends left to live their lives,” he said of the year following his diagnosis and treatment as he waited around his parents’ house to die. “I couldn’t recognize myself in the mirror.”
Zachary, 38, was diagnosed with cancer as a senior in college at Binghamton University in upstate New York. He was 21 and eventually paired up with an 80-year-old social worker to help him through the ordeal.
It started with headaches, but by the fall Zachary, a music major, wasn’t able to play the piano with his left hand. His fingers were no longer able to nimbly do what he wanted them to do. He went to his campus health center and was diagnosed with everything from carpel tunnel to meningitis.
Over Thanksgiving break, he saw his family doctor at home in Staten Island. The doctor was worried, but Zachary asked if he could finish the final two weeks of the semester before undergoing a battery of tests. Then, he went back upstate.
“In two weeks, everything collapsed completely,” he said. His headaches became crippling, and he began to faint and had a small seizure. His speech became slurred and his vision was suddenly blurry.
Once Zachary was back home, the doctors found it: a golf ball-sized tumor at the back of his brain just above where it connected to his spinal column. “The joke was it was all in my head because it was,” he said.
They thought the tumor was benign, but after an eight-hour surgery to remove it, doctors learned it was cancer.
He moved back to his parents’ house and underwent radiation therapy, causing him to lose 110 pounds and throw up 15 times a day, he said. Somehow, he still graduated after calling his college to explain that he might die, but he wanted to finish school.
But he called the film school he’d been planning on attending in the fall to pursue a graduate degree and asked for his deposit back.
“It was torture,” he said. “My friends and family were awesome, but I felt entirely alone.”
Zachary said his doctor wouldn’t even make eye contact with him. Instead, he just spoke to Zachary’s parents –- a problem many young adult cancer patients face. One day, he interrupted to ask “When am I going to die?”
They gave him a 50 percent chance of surviving five years, though he said he now knows there wasn’t much science behind the estimate.
Still, how was he to know that he would still be alive 17 years later?
“It was a strange way to be at 21,” he said, as he weighed whether to undergo chemotherapy to give himself an extra 5 percent chance of surviving five years.
Eventually, he started to live his life, got back to work, got married and had children, but along the way he faced questions no one he knew could answer. When could he tell new friends and colleagues that he was a cancer survivor? Should he tell them at all or try to move on? How long would this be part of his life?
Ten years later, he started a website for young adults with cancer to find books, blogs and online forums so they could connect. He crunched the numbers and figured there were about 3 million people who were battling or had battled cancer as young adults. Where were they when he needed them?
“It’s one thing to say you’re not alone,” he said. “Here’s proof.”
The website, Stupid Cancer, grew to include a podcast with 3.4 million listeners, local chapters, and a national conference -- called "OMG! Cancer Summit for Young Adults" -- that is now in its seventh year.
“Every year, I go and it’s humbling to see people that have never seen or met another cancer survivor their own age,” said Scott Slater, 43, a two-time cancer survivor who has attended every conference.
One of the best parts for many attendees is the chance to just talk about sports or TV without first being asked how they’re feeling.
“People would say that to me three years after I was done,” Slater said, adding that it didn’t upset him, but there’s something nice about being able to put it aside. “You get to be normal for a weekend, which is something you don’t get to do a lot at home.”