Jonathan Gluck Was Told His Cancer Was a Death Sentence. 22 Years Later, He Shares How Science Saved Him (Exclusive)

Yahoo

a day ago

In 2003, writer and editor Jonathan Gluck was diagnosed with an incurable blood cancer
He was 38 — and a new dad — and told he had less than three years to live
Advancements in cancer treatments have kept him alive for more than two decades, he writes in his new memoir, An Exercise in Uncertainty: A Memoir of Illness and Hope In April, when Jonathan Gluck turned 60, friends urged him to mark the milestone with a blowout event. After all, 'no one was sure I'd reach 60,' he says. But the writer and former managing editor of Vogue magazine wasn't interested: 'I was like, 'I don't want to tempt the fates.' '
After being diagnosed with multiple myeloma, an incurable blood cancer that develops in the bone marrow and damages bones and the immune system, at the age of 38, Gluck knows he's already outlived his predicted expiry date by 20 years. But the truth is, he did want to celebrate, in his own quiet way.
So, he, his wife, Didi, and their 17-year-old son flew from their New York City home to Ohio to visit their daughter at college — and they had a birthday dinner in the school cafeteria. On the menu: a 'throwback to the '70s' salad bar and chocolate chip pretzel cookies. 'I couldn't have been happier,' he says. 'It was about being together, the four of us.'
Finding joy in the day-to-day has been one of the 'strange gifts' of Gluck's life with cancer. 'It comes naturally,' says the writer, whose new memoir An Exercise in Uncertainty: A Memoir of Illness and Hope chronicles how he learned to accept living with an incurable disease and examines the remarkable developments in cancer treatment that have kept him alive.
'When you receive a serious diagnosis, you're forced to think about death a lot more than most people, which is awful in a lot of ways,' he says. 'But there's a sense of urgency to everything for me that I think is useful to anyone. It inspired me to make the most of my time, whether that's with my kids, my career, my friends, or my marriage."
In 2003, Gluck was a rising star in the New York publishing world, and he felt like he had it all. A veteran of Men's Health, He'd just been hired as deputy editor of New York magazine—and better still, he and his wife, fellow journalist Didi Gluck, had welcomed their first child, a daughter named Abigail Juliana.
When A.J., as they called her, was seven months old, Gluck went to a doctor about a stabbing pain in his hip that had been bothering him for a year after falling on a patch of ice. Worst case, he figured, he'd need hip surgery. But his MRI results delivered a more shocking blow: cancer. After a battery of tests, he learned he was facing multiple myeloma, a blood cancer with recurring tumors that eat away at bone marrow, and which at the time carried a life expectancy of less than three years. Gluck was told he might not survive more than 18 months. 'The minute I heard the news, it was like, game over,' Gluck recalls.
He started radiation, had his stem cells harvested — and was elated when he went into remission. But then he began a now-familiar wait for the next sign of trouble. 'Living with an incurable disease is like sleeping next to a hibernating bear,' Gluck writes. 'For the moment, I felt safe, but I knew it was only a matter of time before the bear woke up.'
Distraction became a refuge: He threw himself into work, and over the years has discovered Zen-like healing in fly-fishing. 'Your mind tends to not go to all the scary, dark places,' says Gluck of the meditative rhythm of casting a line, which he's been known to practice on his NYC neighborhood street.
With an infant at home, he also poured himself into parenting. 'My single greatest fear was, 'Am I going to miss out on being a dad?'' he says. 'Time with A.J. helped not only keep my mind off of bad things, but put my mind on good things.'
Just before Gluck hit his three-year mark in remission, he and Didi decided to try for a second child. "My wife has been extremely optimistic throughout this whole process and that was one of the most optimistic moments in her," Gluck says, "She helped lead us through, because she didn't hesitate for a split second. She was like, 'It's going to be okay one way or the other. We're having a second kid.' "
But in 2007, four months before their son Oscar was born, Gluck cracked a rib while turning around in his chair at work. Another tumor. Another cycle of radiation, just as he and Didi, now 54, were preparing for their son. Two years later, scans revealed more lesions. From that point forward, it was as if his doctors were playing 'whack-a-mole,' Gluck writes.
The relentless strain of illness, caregiving, and the looming possibility of death, took a toll on Gluck's marriage, which by 2013 was nearing a breaking point, culminating in a screaming match on the streets of the East Village. ('We were the couple other people tried not to stare at,' he writes with painful honesty of the fight.) 'It was like we were preparing ourselves for when I was gone,' says Gluck. 'It's difficult to love somebody when you're afraid they might disappear tomorrow. And it's difficult to love somebody when you have tremendous guilt that you're not going to be here for her or our kids.'
Therapy helped them find their way back: 'We started to rebuild. We forgave each other.' And they accepted the reality of their dynamic. As Didi once said to him, 'No marriage doesn't have a 'thing'... Cancer is our thing.'
Gluck knows there's an odd 'right time/right place' aspect to his cancer. New targeted therapies were developed just as his disease progressed. Some have come with harsh side effects — notably, he writes, uncontrollable diarrhea that caused him to lose 25 pounds and at times saw him dashing from Vogue meetings to the restroom. Other treatments, like CAR T-cell therapy, which genetically modifies a patient's cells to fight cancer, have left his immune system vulnerable.
'I'm slowly getting better, but I'm still living like we all were in the pandemic. I wear a mask in any crowded indoor place. I avoid super crowded places best I can.' But they've bought him precious time. 'Sometimes I walk down the street and shake my head and think, 'How have I survived this?'' he says. "It's not a stretch to say I'm a medical miracle."
Nearly two years after his "mind-blowingly futuristic" CAR-T therapy, which he says left him feeling "reborn," Gluck says 'cancer-wise, I'm doing great.' He marvels over the scientific breakthroughs that have saved him each time his cancer returned. At the same time, he's prone to knocking on wood and kissing his knuckles for good measure. 'I've become quite superstitious,' he admits.
The disease and treatments have left their marks, however: numbness in his fingers and toes, gastrointestinal problems and bone pain in his hips, spine and neck. He takes six pills, a powder and two liquid medicines daily. And every two months for the rest of his life he needs to get an immunoglobulin infusion to keep his immune system functioning— a procedure that can take up to five hours.
It's a small price to pay, he says: 'The moment I was diagnosed, I tried to make a deal with God — 'Just let me see A.J.'s high school graduation.' In my wildest imagination, I didn't think it would happen.' But, as he says, "What better motivation do any of us have than staying alive for our kids?"
Last month, he saw A.J. earn her college degree. Next year, his son Oscar will graduate from high school. 'When you're told you might have as little as a year and a half to live and you wind up seeing all these wonderful milestones, you know you're pretty lucky.'Twenty years ago, when Gluck was diagnosed with multiple myeloma, the disease 'was a death sentence,' says Dr. Hearn Jay Cho, chief medical officer with the Multiple Myeloma Research Foundation who is also a clinical professor of medicine at the Icahn School of Medicine at Mt. Sinai and an attending physician with the Multiple Myeloma Service at the Mt. Sinai Tisch Cancer Institute. 'We'd tell people to get their affairs in order because it was bad.'Life expectancy was two to three years. Today, there are 36,000 new cases of myeloma in the U.S., annually, and median survival is about 10 years, with many patients dying of something other than the disease. 'We've made incredible progress,' says Cho.The drugs Revlimid and Velcade, introduced in 2006-2007, were 'game changers,' he says. 'Before, only about a third of patients had any response to conventional chemotherapy.' With those drugs, 60% to 80% of patients responded, and 'about a third would go into complete remission.' Stem cell transplant therapy and targeted monoclonal antibody drugs like Daratumumab further improved outcomes. Then, in 2021, the FDA first approved CAR T-cell therapy for myeloma, shown to be effective for patients, like Gluck, who'd relapsed after standard therapies.'You can keep patients alive and with good quality of life for a long time,' says Cho, who points out that's due to vital investment in science. 'The job's not done, and we need to finish it. A lot of people are working hard to come up with a cure. Someone like Jon Gluck is alive and kicking today because of medical research.'Read the original article on People