Stories of Hope
Pianist With Brain Cancer Inspires Others To Live Life Fully
Article date: November 27, 2002
...I want to live life, not to get what I want, but to have an effect on others — to change the world one person at a time.
Pianist With Brain Cancer Inspires Others To Live Life Fully
Being 21 years old and invincible, Matthew Zachary didn't let severe headaches or a weakness in his left hand slow him down while studying to get his music degree in 1995 at Binghamton University, New York.
This was despite the fact he was left-handed and a pianist.
But by the time he went home for Thanksgiving to Staten Island, he was fainting and passing out. And he had lost the use of his left hand.
The doctors thought he had carpal tunnel syndrome — after all, he practiced piano about 80 hours per week.
Zachary finished out the semester as music director in a musical. He conducted with his left hand while he played the piano with his right — the opposite of what he would normally do.
But within a few weeks his speech became slurred; he had trouble walking.
Would He Still Be Able To Play?
An MRI on Dec. 29th showed a tumor the size of a golf ball in the cerebellum (lower part of the brain), close to the brain stem. Surgery was scheduled within two weeks.
"My question to the doctor before the surgery wasn't, 'Am I going to live?' said Zachary. "It was, 'Am I going to be able to play the piano again?' "
Friends home from college were constantly coming and going, and livened up the waiting. "What's the password?" said Zachary.
"Tumor," they joked.
"Come on in," he said.
The day of the surgery, Jan. 9, 1996, was the day the "blizzard of the century" hit New York and the hospital closed. The surgery was rescheduled for the next day. Zachary and his doctor arrived in trucks, while hospital staff was brought in by military police in Hummers and Jeeps.
It was a surreal scene, said Zachary, the city buried in an arctic of snow while the National Guard patrolled the streets to make sure there was no looting.
After 11 hours of prep and surgery, Zachary was wheeled to the ICU. At 3:00 a.m. his curtain was whisked back and a priest stood at the foot of his bed, ready to give last rites.
Zachary croaked, "I'm Jewish, I'm Jewish." This got the attention of the nurse, who directed the priest to another patient on life support.
"And thus," said Zachary, "I began my life as a cancer survivor."
The excised tumor was malignant. Medulloblastoma is a childhood cancer, rare in adults. Zachary experienced the strange dynamics of being an adult patient with a pediatric disease. "I dealt with doctors who had never discussed the disease with their patients, only the parents," he said.
His doctors had also never had a pianist for a patient.
After a week he was eager to get back home. When he touched the piano, his left hand worked. It made everything else unimportant.
"But it came with a hitch," he said, "I had to re-train my hand. It would take me six years to feel like it never happened."
Deciding On Further Treatment
For further treatment recommendations, his doctors presented his case to a tumor board in New York City, consisting of pediatric and adult oncologists, neuro- and radiation oncologists from five hospitals.
The board couldn't come to a conclusive recommendation, he said. But his doctors told him he had a 60% chance of living for five years.
Zachary decided on six weeks of radiation with the option afterwards for chemotherapy.
The radiation made him extremely tired and nauseous. "The only thing I had going for me was that I could play the piano again and I wanted to graduate on time," said Zachary.
Zachary studied jazz at school and enjoys improvisation. During treatment, he would come home, bang out his feelings on the piano, and when something sounded good, scribble it down. "It was the best expressive therapy I could give myself," he said.
"Life is like an improvisation," said Zachary. "My grandmother always said, 'Man plans, God laughs.'
"I never asked why," said Zachary. "I don't believe in why, I believe in where; as in, where are you going to take this?"
The "where" was back to school a week after radiation ended. During the last five weeks of school he composed and rehearsed his senior musical, while sleeping 18 hours a day. In four months he lost 105 pounds. By show time, he could only stay awake to direct and play for the musical review.
"My friends were the reason I got up there on the stage. I felt like the hand of God lifted me up like a marionette and set me down on the piano bench," said Zachary. For five nights they had a sell-out crowd.
And he graduated with his class.
That summer had a defining moment. A team of oncologists said they wanted to start a one-year round of chemotherapy. Zachary did a bit of research. One of the side effects was peripheral neuropathy, permanent nerve damage to fingers, toes, and ears — a 10% chance.
He asked them how much did the chemo increase his 60% chance of living for five years? They said 5% — another five months.
"I'd rather live to age 26 and die being able to play piano for the next five years, than live to 26-and-a-half and not be able to play," he decided. It was the beginning of choosing how he wanted to live his life.
Rebuilding His Life
That summer he went to the gym every day and rebuilt himself. At first Zachary could only walk slowly for one minute, his heartbeat shooting through the roof. It took him six weeks to walk slowly for 15 minutes. By the end of August, he was hiking the Grand Canyon.
In November he got a job as a computer technician at a pharmaceutical ad agency. "I had taken most of the medicines they were promoting," said Zachary.
He had many psycho-social issues. "I was afraid; I didn't know who I was anymore," he said. He wore a hat at all times because he was bald and didn't want people to see his scar. He had chewing and eating disorders. None of his co-workers knew he was ill.
But by the next year he made enough money to live on his own in Hoboken, N.J. He threw a private concert for his friends and co-workers in Manhattan's West Village. He packed the theater.
At this time he also received free social services at Beth Israel North: counseling and group therapy, which he still attends.
In 1998 he recorded his "Scribblings" at a studio in Los Angeles. The music resonates with soothing simplicity, life awakenings, and joyous recovery.
In 1998 he gave his first professional public performance at the American Brain Tumor Association Symposium in Boston, playing for 600 people. The experience led to performing for the Genesis Medical Center and the Cancer Institute of New Jersey. Next year he will play for the American Cancer Society's (ACS) R.O.C.K. (Reaching Out To Cancer Kids) Family Weekend in Florida.
It took him four years to develop his sense of identity, to rebuild his life from scratch.
He realized at his five-year remission party in 2001, his life wasn't going to be about computers. He had formed his own consulting company and he was successful. But as the business expanded, it was "sucking the life out of me," Zachary said. He chose to close down his firm.
Choosing Selfish Selflessness
"It was strategic, selfish selflessness, which basically means I want to live life, not to get what I want, but to have an effect on others — to change the world one person at a time," said Zachary.
It came at a huge cost. It cost him his condo, his car, his livelihood, and his grand piano. But he's bounced back. He's networking with other talented professional musicians, including an oncology surgeon, Adam Dachman, MD, who also is a pianist.
"It's about connecting with people," he said, "about sharing your story, and just proving that anything can happen." He has set up his own Web site, www.matthewzachary.com.
"Everything that happens to you, whether you like it or not, becomes a part of your life. You must live your life and be the best you can be every step of the way," said Zachary. He wallpapered his words in his bedroom as he recovered, and they are included in each of his three albums.
Zachary was an ACS Ambassador and the opening performer for the Celebration on the Hill event on the Mall in Washington, DC, in September. He played for 8,000 people.
The night before the event, he practiced for two hours on stage. The capitol building was illuminated behind him. The sounds drifted out into the full-moonlit night.
"It was my connection with the universe that night. The next day was my connection with people," he said.
"Performing for the Celebration on the Hill was such a human experience," Zachary said. He donated 1,000 CDs at the New Jersey tent. "Every person thanked me saying, 'this is for my child…for my wife…in honor of my father….' "
"You don't get more profound than that," said Zachary.