Nine-year-old teenager’s rockin’ racket
David Fogel had it removed to dodge a deadly strain of cancer
It’s 7 a.m. on a school day and, as I’m snoozing peacefully in bed, I hear Cheap Trick’s ’70s hit “Surrender” blasting up the stairs from the floor below.
“MOMMY’S ALL RIGHT, DADDY’S ALL RIGHT, THEY JUST SEEM A LITTLE WEIRD.”
“What time is it?” I grumble to my wife, who is plugging her ears as she crawls out of bed.
“And which one of our three juvenile delinquents is playing that infernal rock ’n’ roll racket?”
The irony is not lost that this is a note-for-note re-creation of my own teenage years, except this time I’m the outraged parent, and the kid blasting the same song that fuelled many aggressive air guitar sessions in high school is my nine-year-old son, Max.
“Mother told me, yes, she told me/ I’d meet girls like you,” he shrieks, singing along with a tune cited by Rolling Stone as “The Ultimate Seventies Teen Anthem.”
“She also told me, ‘Stay away/ you’ll never know what you’ll catch’.”
“TURN IT OFF!” I hear Alicia shout groggily as she ventures downstairs. “YOU’RE NOT A TEENAGER!”
“PLUS,” I shout helpfully, “IT’S NOT 1978!”
But Max, in full flight preteen anarchy, is undeterred, cranking the volume louder as he dances and jumps to what is basically a musical lecture about the dangers of venereal disease and listening to Kiss.
“And when I woke up, Mom and Dad/ Are rolling on the couch/ Rolling numbers, rock and rollin’/ Got my Kiss records out.”
“I don’t get it,” I tell Alicia as he ricochets off his bedroom walls. “He has autism. What happened to his sensory issues?”
This is Max, after all, whose
David Fogel watched his aunt die a devastating death. She was diagnosed at age 56 with advanced stomach cancer, a disease as persistent as it is painful. It took her life in a gruelling 24 months.
Fifteen years later, Fogel still describes his aunt’s immense suffering as one of the most traumatic experiences of his life.
It’s a horror he would never want to put his own family through — if he could help it.
Advancements in genomic research meant he could.
By simply spitting into a tube, he gave geneticists the DNA they needed to detect that he had inherited a rare gene that put him at high risk of developing what’s known as hereditary diffuse gastric cancer.
There was no guarantee he would develop it — though chances were more than 70 per cent. But if he did, it was almost certainly a death sentence.
The only way to outfox his genetic makeup was to remove his stomach.
So in October, the 41-year-old father of two boys, six and three, underwent a total gastrectomy at the National Institutes of Health. The doctors cut out his stomach and reattached his esophagus to his intestines as his new digestive system.
“For me, it was a no-brainer getting my stomach removed,” said Fogel, who lives in Silver Spring. “Being with my aunt and watching her go through the process of dying with stomach cancer, that was enough.”
Complete stomach removal is the type of extreme preventive procedure that has become a real option, thanks to advancements in gene science.
Increasingly, a person’s unique genetic pattern can foreshadow illness, providing a warning that can be heeded long before a disease becomes fatal.
Turning to genetic markers to predict breast cancer may be a better-known application. Women with what’s called the BRCA gene mutation can elect to have their breasts removed before cancer can hit.
Stomach cancer is less prevalent in the United States; there are about 25,000 new cases annually, compared with 300,000 cases of breast cancer.
But breast cancer has an 89 per cent survival rate, while the survival rate for stomach cancer is 30 per cent, according to National Cancer Institute data.
It may be surprising to learn a person can live without a stomach.
But the body is able to bypass the stomach’s main function of storing and breaking down food to gradually pass to the intestines. Absent a stomach, food consumed in small quantities can move directly from the esophagus to the small intestine.
It has been possible to detect the gene for stomach cancer since the late 1990s, when a New Zealand scientist began researching why so many people in one Indigenous community were dying of the cancer.
After 18 months of sifting through the Maori people’s DNA, Parry Guilford, a professor at the University of Otago in Dunedin, New Zealand, discovered a link between those carrying a gene mutation called E-cadherin and those who got the disease.
Because stomach cancer is uncommon in the United States — although it is the fourth-leading cause of cancer deaths worldwide — stomach cancer prevention has not been a leading research priority.
But Guilford, in an interview, said every week or so he’s hearing from an American family who has tested positive for the gene mutation and wants to know more.
It was late last year when a distant relative informed Fogel’s family of the genetic test. Fogel, his sister and his cousin — his aunt’s son — got tested. Fogel was the only one of the three to test positive.
Although the news was a blow, Fogel, who owns a coffee and record shop in Silver Spring, said he looked at his choices pragmatically: He had an opportunity to save his own life, a chance his aunt never had in her day.
He enrolled in an NIH clinical trial run by oncologist Jeremy Davis.
After Fogel’s Oct. 11 surgery, NIH pathologists checked his stomach for signs of precancerous cells and found none.
Fogel had waited almost a year after finding out he carried the gene to go through with the surgery. He made a bucket list of things he would never be able to do again, like entering a pizza-eating competition.
Before the date of his procedure, he downed a pint of Ben and Jerry’s ice cream.
He’ll never be able to gorge like that again.
Even when he’s cleared to expand his diet beyond bland foods such as hard-boiled eggs and peanut butter crackers, he will have to eat in extreme moderation.
It’s made a little easier because he now never feels hunger.
He has to set an Apple watch to remind him to eat or drink a little something every hour.
“I used to be your typical iron belly,” he said. “I would and could eat anything.”
So are the holidays, with their overindulgence, difficult?
Bypassing the Thanksgiving feast wasn’t as difficult as Halloween, when he couldn’t dig in to his sons’ candy haul, he said.
For a person without a stomach, sugar is high on the banned list because it can move so quickly to the intestine that it creates uncomfortable effects.
During a return visit to NIH a month after his surgery, Fogel was all smiles and high spirits.
Davis walked into the room sipping coffee from and the oncologist and patient greeted one another like longtime friends. Davis boasted about the gnocchi and Nutella cheesecake he’d had for dinner the night before.
He patted his stomach and said, “I carry a little extra.”
“You know what you can do?” Fogel said with a smirk. “Get your stomach removed.”