In 1995, Matthew Zachary, ’96, was diagnosed with pediatric brain cancer. It was the fall semester of his senior year at Binghamton Unviersity, and he first noticed symptoms on campus when his left, dominant hand lost its fine motor function. As a composer and concert pianist, this rendered Zachary unable to write and play music. When he approached the Decker Student Health Services Center, Zachary said they simply gave him Robitussin.
“Spoiler alert, it did not work,” Zachary said. “It was ultimately brain cancer. I was actually quite relieved to hear that there was something wrong with me because when your left hand stops working and nothing else is wrong with you, everyone says, ‘It’s in your head,’ and it was.”
Zachary, the founder of Stupid Cancer, a young adult cancer community, presented his journey from an end-stage cancer patient to a cancer survivor during a talk and musical performance on Wednesday afternoon. As he told his story to a crowd in the Fine Arts Building, he gave personal anecdotes — pausing only to play original piano pieces related to that specific time in his life.
Zachary had brain surgery a few months after he was diagnosed in January 1996, and was later treated with radiation. When doctors wanted to give him chemotherapy, however, Zachary refused.
“They did want to give me chemotherapy,” Zachary said. “It turns out the chemotherapy they wanted to give me would not have actually helped me.”
Zachary’s godfather, who was a genetic researcher, discovered the chemotherapy the doctors wanted to give Zachary contained vincristine, a chemical that would have permanently damaged Zachary’s fingers and toes. Zachary decided he would rather die in five years playing the piano rather than die in 80 years and never play again.
“I actually chose not to do chemotherapy and take a major risk,” Zachary said. “[Playing the piano] was more important to me than what they thought was more important to me — the longevity.”
Zachary credits his godfather for inspiring him to make the decision.
“That level of dignity that he gave to me was bereft of the medical community at the time,” Zachary said. “How many concert pianists that are cancer patients do you get? Very few.”
Although he was 21 years old at the time of his diagnosis, Zachary was placed in the pediatric ward to receive his treatment. Zachary said seeing children with cancer so frequently was scarring.
“Until you’re in the club, you don’t know the club,” Zachary said. “That’s OK. It’s a blessing to not know the club, but these kids sent me in the direction to be a cancer advocate.”
As a cancer advocate, Zachary founded Stupid Cancer in 2007. The group aims to build community among young adults affected by cancer and end the isolation that is often brought on by constant doctor appointments and health concerns. Zachary said Stupid Cancer has become the largest community for adolescents and young adults affected by cancer in the world, a community Zachary longed for during his time as a cancer patient.
“I hope that I could become the guy that makes it suck less for the next me,” Zachary said. “This is a very instinctual human inclination to want to give back.”
Last year, Zachary chose to step down as the chief executive officer of Stupid Cancer.
“I needed to reinvent myself,” Zachary said. “A lot of this came because of [BU]. It dawned on me that I need to give back in a different way.”
His next project will Off Script Media, a patient advocate health podcast company which is planned to launch next year. Zachary said he wants to involve the University in bettering patient advocacy in the media.
“The goal is to give a raw, reimaging of conversation to people around the world who feel like there’s no one like them,” Zachary said.
Darren Tun, a junior majoring in cinema, came to support Zachary during his presentation as Zachary’s mentee. Tun met Zachary through a distance mentoring program at Harpur Edge, and said Zachary is always eager to give back.
“The presentation was really inspiring,” Tun said. “He told his story in a really interesting way by incorporating his original music. It highlighted his emotional connection with Stupid Cancer really well.”
Bringing awareness to cancer research is a by-product of his advocacy, and Zachary said he hopes to continue bringing survivors together.
“This is about when you get sick, no one should give you Robitussin for brain cancer,” Zachary said. “No one should tell you, ‘You’ll never play piano again.’ No one should tell you, ‘You’ll never get married. You’ll never have children.’ You need to be part of a community that gets you with no judgments and no stigma.”