Jonathan Tyrer of Riverhead spares no embarrassing detail about the aftermath of his stomach cancer surgery.
In fact, he’ll tell you — and all the customers eating within earshot at Panera Bread in Riverhead — about the mortifying moment he experienced in a tiny hospital room bathroom with his roommate’s family on the other side of thin walls.
It’s apparent he subscribes to the belief that laughter is the best medicine.
Diagnosed with a rare form of stomach cancer at just 18, he speaks without an ounce of self-pity in his voice and tells of how his friends have no problem making cancer jokes, which he appreciates.
And day-to-day life hasn’t changed a whole lot. He works out at Planet Fitness, hangs out with friends, loves Funcho’s fajita grill and in many ways tries to live as normal a life as possible.
But there are, of course, challenges. The chemotherapy regimen does take its toll and he and his family are now lobbying the federal government to prevent cutting Dr. Su Young Kim’s position, the doctor who has led research efforts on Jonathan’s cancer for the past three years.
Now a college student, Jonathan, a bespectacled self-proclaimed lover of all music who sports a Buddha tattoo on his forearm, wants to share with the world what it’s like to be 20 — and living with cancer.
Jonathan, an only child, underwent several tests for Crohn’s disease in 2009. He was displaying symptoms and his father, Keith, had been diagnosed with the disorder in 1993.
The then-18-year-old soon learned he was clear of Crohn’s, but doctors found something else wrong with his gastrointestinal tract.
“That’s when they found two golf ball-sized tumors in my stomach,” Jonathan said. He couldn’t see or feel the cell clusters, called a Wild Type GIST tumor, and they did not interfere with his eating habits, he said.
But left untreated, they could be deadly.
He went for a test Sept. 4, 2009, his mother’s birthday, at East End Radiology, a day Donna Tyrer will never forget.
“I remember when I saw it on the film,” said Ms. Tyrer, who is a licensed practical nurse. “I just knew in my heart that it was cancer.”
After a month of doctor’s appointments at North Shore Long Island Jewish hospital, Jonathan would learn he had a gastrointestinal stromal tumor, more commonly referred to as GIST, and in his case, a Wild Type GIST.
“I must have had it for years and they just didn’t know it,” he said.
His friends and family were in shock.
“Back then we kind of believed it never could happen,” said Erik Hope, Jonathan’s friend of 17 years.
The news was especially devastating for his mother.
“It was as if you were holding a glass and it shattered. It just shattered to pieces,” she said.
It wasn’t much easier for his father, a retired Wildwood State Park supervisor.
“Being his father, you always try to be the strong one,” Keith Tyrer said.
Surgery was scheduled for Oct. 28, 2009, at Memorial Sloan-Kettering Cancer Center in Manhattan.
What is Wild Type GIST?
According to the American Cancer Society, GIST tumors, a rare cancer found in the lining of the GI tract, are found in about 4,000 to 5,000 people every year. But Dr. Kim of the National Institutes of Health, who has worked with Jonathan for the doctor’s research, estimates that fewer than 200 children in the U.S. have been diagnosed with a GIST tumor.
Pediatric GIST tumors are slow-growing and 85 percent of those affected are girls. A Wild Type tumor, like the one Jonathan has, is one without a mutation in the kit gene, which affects how the cancer is treated.
GIST tumors typically do not respond to traditional intravenous treatment. Surgery is the primary form of treatment, though many patients also take chemo pills such as Gleevec or Sutent.
Still, doctors have told the Tyrer family that the survival rate for tumors like Jonathan’s is 97 percent.
In most cases, the tumors are not genetic and are caused by a gene mutation. “In rare cases, though, GISTs have been found in several members of the same family. These family members inherited a gene mutation that can lead to GISTs,” the American Cancer Society states on its website.
Jonathan signed waivers allowing researchers at the National Institutes of Health to examine his tumors, because they are so rare.
That was one of the last things he remembers before the eight-hour surgery.
Four IV tubes inserted into his body and a nasogastric tube in his nose were the first things he noticed when he woke up.
“I looked like a robot,” he recalled.
That he was allergic to morphine, which one of those IVs was pumping into his body, was the second thing he noticed. He vomited almost immediately upon waking.
“I said knock me out or kill me because I can’t deal with this pain,” he said.
“I took one look at him and I had to walk out of the room,” his mother said. “I couldn’t bear for him to be in that kind of pain.”
After three days of drifting in and out of consciousness, doctors asked Jonathan to start eating again — not an easy task for someone who’d just had half his stomach removed, which the surgery called for.
“I had to get up and do a lap around the floor just to have one spoonful of yogurt,” he said.
But he wasn’t digesting the food properly. He eventually vomited two days’ worth of food into a bucket next to his hospital bed.
“I started crying; I broke down,” he said. “But something inside my head was just like ‘You got to do this. You have to push through.’ ”
Jonathan spent the next few days watching DVDs — lots of episodes of Season 5 of “Family Guy” — on a laptop given to him by him mother’s friend. Friends and family came through to say hello, but one visit stands out in his mind.
Then-Riverhead High School principal David Zimbler stopped by for a visit on Oct. 31, 2009. “On Halloween, when he could have been with his kids, he came up and saw me,” he said. “I was in total shock.”
The few days after his operation were so painful that Jonathan has limited memory of the experience. But his mother kept a photo journal to show him proof that he was making progress every day.
And there was progress.
Jonathan eventually recovered and was released from the hospital about two weeks after surgery.
Jonathan returned to school Dec. 1 2009, after working with tutors for much of November. He later started taking Gleevec, a drug that treats leukemia as well as GIST, which left him exhausted by the time he got home. GIST tumors do not respond to traditional IV chemotherapy.
“Holding that pill in my hand that first day, it was the hardest thing,” Ms. Tyrer said of giving Jonathan his first dose.
Luckily for the Tyrer family, Mr. Tyrer’s insurance pays for a large portion of Jonathan’s medical care.
Gleevec alone can cost $4,500 a month, according to the New England Journal of Medicine.
By early 2010, Jonathan was able to hang out with friends on a regular basis. His class load was light, which enabled him to excel at school even during his treatment.
He even got accepted to Five Towns College in Dix Hills, where he now studies business with a major in audio production and music engineering.
“It was just like a normal senior year except he had cancer,” said his friend Erik.
But in April 2010, his parents took Jonathan out to dinner to break some bad news: the Gleevec was not working.
There was another tumor growing along his incision line, and several tiny growths along his intestines.
After a few more tests doctors decided Jonathan didn’t need another surgery — yet.
“They told me not to worry about the tumor because it’s so small,” he said. “Luckily, it hasn’t grown.”
Despite that setback, Jonathan was determined to finish out his senior year just like any other 18-year-old.
He went sky diving on his high school graduation day, planned to return to his old job as a lifeguard at Splish Splash Water Park and brought not one, but two girls to his senior prom, though just as friends.
But he never forgot about the battle raging inside his body.
“At the same time, I’m fighting for my life,” he said.
Today, Jonathan is on the Sutent regimen. He is still taking classes at Five Towns, and though he said his grades were less than stellar his first year, he is doing well this semester. He hopes to someday work as a music producer.
He spends time with friends and tries to live as normal a life as possible, all while trying to live life to the fullest.
“I’m a big risk-taker,” he said. “I have cancer. I don’t know when I’m going to go.”
Some days, the Sutent is too much and he just has to rest.
But the big questions remain.
“How long am I going to live?” “Am I going to grow to be an old man?” are questions he frequently asks himself. Weighing on him constantly is his greatest fear — passing the disease down to his children.
“It’s something that boils in my mind,” he said.
It’s no easier for his parents, who are always thinking about their only son.
“Is he nauseous? Is he fatigued? If he isn’t, that’s great. It’s a good day,” Mr. Tyrer said.
An unexpected result of the surgery and monthly visits to Sloan is that the Tyrer family is now closer than ever before.
“All three of us have just gotten really close,” Ms. Tyrer said. “There’s one thing my son’s cancer has shown me, and that’s patience.”
Jonathan, a Buddhist, strives to live in the moment, but not because he’s petrified of his future.