The Best Chef in America Got Tongue Cancer and Kept Cooking Food He Couldn’t Taste

Grant Achatz had the best restaurant in America and, by the summer of 2007, a tumor that was eating his tongue.

He was 33. Two years earlier, in May 2005, he and his business partner Nick Kokonas had opened Alinea on a quiet block of Chicago’s Lincoln Park. By October 2006, Gourmet had named it the best restaurant in the country. Achatz cooked food nobody else was making — courses served on pillows that exhaled scented air, a strip of bacon hung swinging from a steel bow, flavors built and dismantled across a meal like movements in music. He had trained four years under Thomas Keller at The French Laundry and worked briefly at Ferran Adrià’s elBulli in Spain, the two kitchens that defined the era’s high cuisine. His entire art ran through his mouth.

The white spot had been on the left side of his tongue for years. An early biopsy came back clean. When the tongue abruptly swelled in July 2007 and an oral surgeon took another sample, the answer was squamous cell carcinoma, stage IV. The malignant mass had grown across more than half the tongue and reached into the lymph nodes of his neck.

The refusal

The standard treatment for a tongue tumor that advanced is to remove the tongue.

A surgeon at Memorial Sloan-Kettering in New York laid it out: a near-total glossectomy, removing all but a small remnant of the tongue, plus a dissection of the neck. Speech and swallowing, Achatz was told, would be severely compromised. To show what life would sound like afterward, the surgeon mimed it. Achatz later described the demonstration as barbaric — not talking, he said, but grunting. Without treatment, he was told, he had months to live.

For most patients the trade is brutal but clear: a working mouth for a living one. For a chef whose reputation rested entirely on taste and invention, surgery that left him unable to speak clearly or eat normally would end the career even if it saved the man. He went home and did not schedule the operation.

Kokonas did not accept that the New York surgeon’s plan was the only plan. He pushed Achatz toward the University of Chicago, where a head-and-neck team was running something different.

Running the gamble backwards

The conventional sequence puts surgery first and uses chemotherapy and radiation to mop up afterward. The trial that the oncologist Everett Vokes and the radiation oncologist Daniel Haraf offered inverted it. They would hit the tumor first with aggressive chemotherapy to shrink it — a drug mix that included a then-new targeted agent, cetuximab, sold as Erbitux — then with combined chemotherapy and radiation. The glossectomy would be held in reserve — used only if the chemoradiation failed. If it worked, Achatz would keep his tongue.

The treatment began in late July 2007: weeks of chemotherapy, then chemotherapy and radiation together — sixty-five radiation treatments in all, stretching deep into the fall. He drove himself to the appointments. He went to Alinea afterward. Some nights he pulled the car over on Lake Shore Drive to be sick, then kept driving.

The radiation burned the inside of his mouth raw, and eating became something close to impossible. Then the taste itself went. The radiation killed the taste buds outright. “You would put something in your mouth — say, a vanilla milkshake,” he said, “and it tasted like nothing.” For weeks his diet was milkshakes anyway, taken for the calories, not the flavor — flavor was gone.

Cooking blind

He kept developing dishes anyway.

The man whose job was to decide whether food tasted right could no longer taste anything, so he borrowed other people’s mouths. His second-in-command, Jeff Pikus, became the palate. Pikus could no longer just hand Achatz a spoon to check; the two had to work entirely in words. Pikus would taste a prototype and report — it’s sweet, but not too sweet; it’s acidic, do you want to push the acid or pull it back — and Achatz would direct the next adjustment from memory, against the catalogue of flavor he carried in his head from a lifetime of tasting.

It ran the opposite of how a kitchen normally works. “I had to talk him into why it might taste good,” Achatz said of one dish they built this way. “And then when we put it on the plate, I had to ask him, ‘Does it taste good?’” Out of that backward method came new plates on Alinea’s menu, designed by a chef who could not sample his own cooking. The restaurant never closed. Few of the diners knew the chef working the pass was being burned hollow by radiation each day and could not taste a thing he sent out.

In mid-December 2007 surgeons removed the suspect lymph nodes from his neck, and the biopsies came back clean — not a trace of cancer. On December 18 Achatz announced it. He was in remission, and he still had his tongue.

Sweet, first

Taste did not switch back on. It returned the way it first arrives in an infant — one channel at a time, from nothing.

“I started from zero,” Achatz said, “and the first thing back was sweet.” It came in a cup of morning coffee, loaded with sugar for the calories, when the sweetness suddenly registered where for months there had been nothing. For a stretch he lived on ice cream and milkshakes, chasing the one sensation he could feel. The rest followed slowly and unevenly — bitter, then sour, then salty, spread across months, the recovery jagged rather than smooth, a flavor present one day and gone the next. Each new channel rewrote the others: once salt returned, he could finally feel how it played against the sweetness and the bitterness, the way the elements braced one another.

A chef who had spent his life tasting reflexively, the way other people breathe, had been forced to watch taste assemble itself from the ground up, one element at a time, at thirty-three. He came to call it the thing cancer gave him that nothing else could have. “It really made me understand taste,” he said, “and the way components come together. Because we never normally have the opportunity to isolate taste.”

Alinea went on to three Michelin stars and a run as one of the most acclaimed restaurants on earth. The chef who built it spent the autumn of 2007 sending out food he could not taste, on the word of the cooks beside him — and got his mouth back one flavor at a time, starting with a sugared coffee that finally tasted like something.