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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Achatz may have avoided what is perhaps one of the most debilitating surgeries that exist: Survivors of total glossectomies—removal of the whole tongue—can barely talk and must drink their food using gravity. But his treatment was punishing in its own way: He started with eight weeks of daily chemotherapy, followed by six weeks of chemo plus radiation, with a radiation boost every day in the final two weeks. In December, he underwent a bilateral neck dissection to remove all the lymph nodes on the left side from the top of the neck to his collarbone, and a cluster from the right side.

From the beginning, resoluteness—bordering on what seemed like denial to the people around him—was Achatz's way of coping. During his hours-long chemotherapy sessions at the U. of C. hospital, he tapped away on his laptop, e-mailing and working on the text of his cookbook-in-progress. He went straight from the hospital to the restaurant throughout his chemotherapy and all but the final week of his radiation treatment, often closing up the place well past midnight. He also insisted on driving himself to and from his appointments, occasionally needing to pull over on Lake Shore Drive to vomit. Except for a handful of moments, he did not cry. "I'm not an insensitive or an emotionless person," he says. "I realize that it's serious and I realize that I could die. But I'm not just going to curl up in a ball in the corner."

Then there was his kooky and grimly reality-based sense of humor. "Right off the bat we were calling him cancer boy," recalls his close friend Christopher Gerber, the maître d' at Alinea until March 2006. Gerber remembers one episode in particular: One afternoon, toward the end of chemo, Achatz was home with his sons and, while talking to Gerber, absent-mindedly twirled a lock of his hair. "He fluttered his fingers and this hair fell out," Gerber says. "He said to Kaden, 'Hey, pull my hair!'" Kaden and Keller took turns grabbing little fistfuls of Daddy's hair. "They got the biggest kick out of that," Achatz remembers. Later that day the two boys helped Achatz shave what was left into a Mohawk—clean sides with a narrow strip on top; in a show of solidarity, a number of cooks, including a bald guy who had only a beard to work with, followed suit.

Vokes thinks that Achatz's fixation on working helped him endure the rigors of treatment. "I actually think it distracted [him] from the pain and discomfort," Vokes says. Achatz's response to Erbitux, the focus of the clinical trial, was excellent. According to Vokes, the drug may improve conventional treatments by disrupting the cell's ability to repair itself after the damage caused by chemotherapy and radiation. Or Erbitux may work by arresting a tumor cell in a phase during which it is especially susceptible to damage and, thus, eradication. "These are all proven in the lab . . . [but] we never can prove the specific mechanism in people," Vokes says. "What we know is that the cure rates are higher." In Achatz's case, after Erbitux and chemo, the tumor shrank by more than half. Then, with radiation, the tumor vanished entirely.

His tongue now contains scar tissue where the tumor once lived, but the pain is gone and mobility is returning. He can also talk without slurring, although his voice has changed—it sounds strained and a bit tinnier—because of damage to the voice box during radiation. Achatz says his taste is coming back, too, but slowly. "Two weeks after radiation I couldn't taste a thing. You could put anything in my mouth and it would taste like cardboard," he told me in February, about three months after radiation ended. "What's coming back first is sweet. Savory, salt, is coming back slow." In his first meeting with the doctors, they told him that most people recover 90 percent of their taste. Achatz thinks that percentage is only a guess, but he's hopeful. By late April, Achatz was still in transition. "What I've realized is that the recovery process is not linear," he says. "One day I'll be like, My taste is back! And the next day I won't be able to taste anything." Savory flavors are still mostly absent, alcohol burns, and even slightly spicy food is painful.

Achatz has asserted in the past that he could still run Alinea even if he could no longer taste food—and he could be right. In October, after radiation had made it too painful to eat much besides chocolate and vanilla milk shakes, Achatz and Jeff Pikus, one of his trusted sous-chefs, who stepped into the role of second-in-charge, were able to invent several new dishes together. Achatz's idea for one was to create a silky bean purée and pair it with a dozen or so complementary flavors. In brainstorming sessions, he and Pikus worked out the components—for example, deciding that lemon as a flavor would appear in the dish as a lemon marshmallow—but this time, Pikus took the lead in executing the prototype. The bean purée was too grainy at first, and required several versions—which Achatz could only look at, smell, and touch with his fingertips.

But more challenging was perfecting the flavors. "It's hard to pinpoint how to make something taste good," Pikus says. "It's almost an intuitive thing." For the bean dish, Pikus could no longer just hand over a sample to Achatz; he had to work in a new way that was purely verbal. "I had an idea of what he wanted based on the other components, but it was me that had to say, It's sweet but not too sweet, or It's acidic, but do you want to push the envelope of acid or be more mellow?" Pikus remembers. "Based on that we made tweaks and adjustments." The result—called Beans with Many Garnishes—was a classic of the Alinea genre: an ethereal purée of navy beans surrounded by about a dozen garnishes including the lemon marshmallow, a vanilla-and-bay-leaf gelée, and dehydrated mango and tomato strips.

During his treatment, which lasted from July 31st through December 13th, the date of his surgery, Achatz kept busy in this way but says he was also sustained by a huge outpouring: loads of e-mail from fans of the restaurant and fellow chefs, heartfelt looks from his customers, and the intense bonding that accompanies hardship. Midway through Achatz's treatment, Sperling, his girlfriend, arranged a special dinner at Gramercy Tavern, a well-known restaurant in New York. She somehow knew that Michael Anthony, the executive chef, had lived through a similar ordeal: A close relative had had his tongue removed to fight the same cancer nearly a decade earlier. His meal for Achatz was a lovely array of foods that were either very soft or drinkable. Achatz and Sperling also embarked on a marathon of last suppers in the three months leading up to radiation, which loomed like D-day in his mind. They were showered with excess at Jean-Georges in New York, Charlie Trotter's, and Avenues, where Graham Elliot Bowles prepared more than 20 courses for the couple.

Of course, there were many low moments, too. Beyond the usual side effects of chemotherapy, the intense radiation—twice a day in the final two weeks—burned the inside of his mouth and throat so severely that he couldn't swallow water, let alone any kind of food. Near the end of radiation, he weighed just 131 pounds, down from 165. The recovery has gone as well as can be hoped for, his doctors report, but what has surprised Achatz is his yearning to be healed. "There's a letdown point after surgery," he says. "At that point, you're going, I made it, guys! Hello! I'm done! Can I feel better now? And the answer is no. You get the flu and you're sick for a week. I've been sick for eight months."

In January, Achatz stole away with Sperling for a ten-day vacation on St. Barts island in the Caribbean. "The kicker was, we had this beautiful little villa on the beach and it was absolutely gorgeous and St. Barts is French," he remembers. "You walk into a grocery store and there's fresh foie gras and beautiful charcuterie and artisan-baked bread. And I'm sitting there going, Are you kidding me? And I couldn't eat it." Instead of picnics on the white-sand beaches with wine, cheese, and his new girlfriend, Achatz could manage only scrambled eggs and overcooked pasta.

Then there was the stress of watching cooks file out the door—by his count some 14 line cooks—and his restaurant strain under the pressure. Some of the cooks who left took job offers they couldn't turn down; others, Achatz thinks, simply freaked out when the bad news hit. At one point the kitchen, normally staffed with up to 20 cooks during the service shift, limped along with a skeleton crew of just nine that included many newcomers. "I was more scared for this place than I was for my life," he says.

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

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