Burned

Thirty-three-year-old top chef. Stage-four cancer of the tongue. Grant Achatz has been to hell—and back

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Dr. Everett Vokes: "I'm an expert in head-and-neck cancer, but cases like this are really rare."

Achatz still has no idea why he got sick. Neither does his oncologist, Everett Vokes at the University of Chicago Medical Center. "I'm an expert in head-and-neck cancer, but cases like this are really rare," Vokes told me recently. Of the 34,000 cases of mouth and throat cancer diagnosed in the United States every year, about 90 percent originate, as did Achatz's, in the squamous cells, the flat, scale-like cells that cover the tongue like a skin and also line the oral cavity and the pharynx. It's a relatively rare cancer—by comparison, lung cancer struck more than 200,000 Americans in 2007—but squamous cell carcinoma is considered very deadly in its late stages and has proved difficult to cure without recourse to radical, disfiguring surgery.

Achatz is an unusual case for a few reasons: The typical patient is a male in his 60s with a history of smoking and heavy drinking. Achatz says he has never smoked, and his doctors say that even his occupational drinking—one or two glasses of wine a night—would not have been enough to trigger the cellular mutation that leads to a malignancy, because Achatz is simply too young. Oral cancer also tends to be fast-moving, spanning a couple of months from initial symptoms to stage-four malignancy; Achatz appeared to have lived for years with something slower-growing. Finally, younger patients with the disease increasingly test positive for the human papilloma virus, the same virus that is recognized as a cause in cervical cancer; Achatz did not.

The thought has crossed Achatz's mind that perhaps the disease took root in his youth: He grew up in a small Michigan town that received its drinking water from the nearby St. Clair River, which Achatz believes to be contaminated with industrial pollutants. "A lot of people—a lot of young people in my hometown have cancer," he tells me. But at this point, he realizes, speculating about why gets you only so far. (Midway through his treatment, Achatz remembered that an aunt had survived bone cancer in the jaw; but Vokes dismisses the suggestion that the cause is genetic.)

Sometime in late 2003, Achatz noticed a "little white dot" on the left side of his tongue that was sensitive when his tongue rubbed against his teeth or when he talked in a certain way. He also noticed the dot flared up when he ate very spicy food. But those were busy times for the young chef. Two years before, he had taken over as the executive chef at Trio, a four-star restaurant in Evanston that became an improbable breeding ground for emergent top chefs. Now Achatz was attracting national attention for his playful brand of technically experimental cuisine that seemed more like edible abstract art than something you might otherwise call dinner. In 2002, Food & Wine magazine named him one of its 11 best new chefs and the James Beard Foundation nominated Achatz for its coveted "Rising Star" award, which he didn't get but won the next year. In 2003, the Los Angeles Times dropped by for a visit; later, Amanda Hesser from The New York Times showed up; then the hordes descended. Meantime, Achatz's homelife was busy, too: His second son, Keller, arrived in December 2003, joining his two-year-old brother, Kaden. Needless to say, the annoying white dot wasn't getting much attention.

Even so, the pain was persistent enough to prompt a visit to the dentist. She thought Achatz was biting his tongue, probably from stress. Achatz later went to see a general practitioner, who was puzzled by the patchy white lesion and recommended a biopsy. Finally, in November 2004, about a year after he first noticed the dot, a surgeon took a biopsy—and the results came back clean. "Everybody said, 'Aw! See! You've got two kids. You're running a four-star restaurant. You're working too much. You're biting your tongue,' " Achatz remembers. "In my mind, this is all making sense."

After all, he had just lived through the busiest time at Trio since he started, culminating in June 2004 when he announced that he was leaving to open his own restaurant. "So, I'm going, OK, nothing to worry about. It'll go away. Whatever," Achatz recalls. Of course, it didn't go away. Tragically, this plausible hypothesis—that Achatz was chewing his tongue raw—carried him along for two and a half years, from the initial negative biopsy all the way to his stage-four cancer diagnosis last July.

In retrospect, Achatz blames his extremely busy work life—which delayed his response time from appointment to appointment—but also an almost comically bad string of wrong diagnoses from his dentists and doctors. The timeline goes something like this: In November 2005, a year after the biopsy, Achatz complained to his dentist that the pain hadn't gone away and, in fact, was getting worse. He had been so busy running Alinea since its May opening that he was self-medicating with a topical numbing gel. The dentist measured the lesion and assured him that it was probably nothing more than a stress wound. In July 2006, having moved from Evanston to Chicago, Achatz switched to a new dentist, who fitted him for a mouth guard to prevent his lower teeth from rubbing against the irritated part of his tongue. In August, she fitted him for a second mouth guard, this time to cover his upper teeth.

Nearly a whole year passed until, in June 2007, he went back to his dentist because his tongue had begun to swell. "I would wake up in the morning and I could see on the left side of my tongue there was an imprint of my teeth," Achatz recalls. "I said, Look at this! What the hell is going on?" (Later the same day, Achatz went to see a doctor for a lymph node in his neck that had blown up to the size of a golf ball. The doctor told him that his tongue was probably infected, which would explain the puffed lymph node, and prescribed antibiotics.) The dentist referred Achatz to a periodontist—a gum specialist. Two weeks later, the periodontist took one look and made an emergency appointment for the chef to see an oral surgeon. When Achatz finally showed up at the Lincoln Park Institute, an oral and cosmetic surgery practice near Alinea, he was in so much pain he could barely talk; he typed up his symptoms and simply handed the printout to the receptionist. The doctor there took a biopsy, and four days later, on July 13th, Achatz received the news.

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Photograph: Tom Maday

This article appears in the June 2008 issue of Chicago Magazine.

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