A brilliant young Chicago chef overcomes cancer

The dining room at Alinea is a rare and special place where waiters in dark designer suits glide past tables, carrying trays laden with fantastical creations:

Steelhead roe in coconut suspended from vanilla pods. Granola encrusted bison with oatmeal foam. Persimmon and red curry. Jelled apple cider floating in walnut milk and vegetable ash. Sweet potato and bourbon tempura pierced by a smoking cinnamon stick.

Dining as performance art. It is one reason people flock to this 3-year-old Chicago restaurant named the best in the country by Gourmet Magazine and considered by many to be among the best in the world.

More Coverage Links Chicago's Grant Achatz takes top chef award at food 'Oscars' [06/09/08]

They come for the experience and the mystery. They come for the sheer joy of sampling what the genius young chef with the magical touch has dreamed up next.

"Alinea" means "new train of thought," and that is precisely what 34-year-old Grant Achatz is all about.

Achatz, winner of this year's James Beard Outstanding Chef award, wants diners to be dazzled by his daring (slivers of bacon, drizzled with butterscotch dangling from a miniature trapeze) to chuckle at his whimsy (pb j involves a single grape dipped in homemade peanut butter and encased in a film of brioche) and even to weep at the memories some dishes evoke.

But what few diners know is that the most startling aspect of that performance is not the food. It is that the man who spends 17 hours a day orchestrating it has never tasted some of his most exotic creations.

Last summer, Achatz was diagnosed with advanced tongue cancer.

His latest dishes were conceived in a bland little booth at a local chemotherapy clinic as poison dripped into his body, killing not just his malignant cells but also his sense of taste.

All his life, Achatz has pondered food and its relation to the senses. The season's first daffodils make him wonder how to capture the essence of spring. A walk in the woods brings to mind the gnarly root of salsify. Pizza night with his boys wafts around in his brain until eventually he figures out a way to concentrate the flavors into a wafer-thin amuse-bouche the size of a quarter.

Taste, Achatz says, is more than what happens on the tongue. "It is about emotion, translating a feeling, a memory, an experience."

He is sitting in his whites at a sleek black mahogany table in Alinea's upstairs dining room, an hour and a half before the night's service begins.

He is thoughtful and deliberate and soft-spoken, his thin, freckled face radiating youth and vigor, though he acknowledges the toll cancer has taken. Gone is the once ever-present can of Diet Coke - carbonation hurts his mouth. These days he downs protein drinks, trying to build back some of the 30 pounds he lost. He carries a little bottle of Lidocaine, which he sips to numb the pain.

But illness is not something he focuses on at Alinea, where everything is about creativity and emotion.

"We want to reset your mind," Achatz says, grinning.

In 2000, Achatz spent a week in Spain with chef Ferran Adria at the El Bulli restaurant in Catalonia.

Adria is at the forefront of a cuisine called molecular gastronomy - a kind of fusion of kitchen and science lab. Ingredients like agar agar and sodium alginate and carrageenan are used to thicken and mold food in unconventional ways. Foams and warm jellies and liquid nitrogen all play their parts.

Mesmerized by the manipulations of texture and taste, Achatz returned to California with a new sense of inventiveness - one that would find expression the following year when he tried out for top chef at Trio in Evanston.

"His food wasn't just out there," owner Henry Adaniya said. "It was from Mars!"

It was also the best Adaniya had ever tasted. The black truffle explosion - a single ravioli that burst with warm truffle broth when Adaniya bit into it - eventually became a signature dish. But Adaniya was just as impressed by porkbelly.

When Achatz won the James Beard Foundation's rising star award in 2003 Adaniya was as proud as if the chef was his own son.

Yet he couldn't help but wonder about the toll on Achatz's health. Even by the grueling industry standards, Achatz worked harder and with more intensity than anyone Adaniya had ever seen, often spending 17 to 20 hours a day in the kitchen - cooking, creating, thinking, always so serious, so focused.

"There were times I felt afraid for him," Adaniya said. "I thought how can any man run that way."

But Achatz had a vision and he was unstoppable. Especially after he met the man who would become his great friend and champion.

Nick Kokonas, a derivatives trader who retired in his 30s, had been a regular at Trio for years. But Achatz' food amazed him. Soon Kokonas and his wife, Dagmara, were dining at Trio several nights a month.

From the start, Kokonas and Achatz felt an easy kinship - both the only children of loving, hardworking parents, both driven, articulate and ambitious. Kokonas sensed that he was in the presence of a great artist who needed his own platform to truly shine.

In January 2004, Kokonas asked Achatz to create a special meal for Dagmara's birthday. "She's ethnically Latvian, speaks Japanese and loves Thai food," Kokonas said.

"I knew it would screw up his week," he added, "but I couldn't wait to see what he came up with."

That night's 25-course extravaganza - Latvian sorrel soup with smoked ham hocks, frozen Willakenzie verjus with thyme, liquid cake of Kaffir lime and banana - became the meal that launched Alinea. Heady with food and wine, Kokonas asked Achatz if he would be interested in a restaurant venture together.

Within three days they had a business plan.

And they had a goal: to build the best restaurant in the country.

Achatz first noticed the little white spot on his tongue in the hectic months leading up to the opening of Alinea. A dentist suggested he was biting it from stress. He fitted Achatz for a night guard and told him not to worry.

Achatz was too busy to worry.

The buzz just grew after the restaurant opened on May 4, 2005. It exploded after Gourmet named Alinea the best restaurant in America in October 2006. Everyone, it seemed, wanted to dine at his restaurant or visit the inner sanctuary where serious young cooks pored over their stations with an intensity that bordered on the spiritual.

When something is wrong in this kitchen, the whole staff can sense it.

Achatz has a quiet commanding presence and rarely raises his voice. But by the summer of 2007, he was barely able to speak. The painful white sore on his tongue that had dogged him for over a year was also affecting his appetite and his sense of taste.

His dentist diagnosed stress. A biopsy came back negative. Relieved, Achatz wedged a wad of chewing gum between his tooth and his tongue and tried to ignore the pain. The divorced father had enough to juggle - inventing new dishes for Alinea, working on a cookbook, raising two small boys, romancing his girlfriend, food writer Heather Sperling.

And then overnight in early July his tongue exploded into a throbbing swollen mass that left him barely able to swallow. Achatz knew it was bad by the look on the doctor's face. But nothing prepared him for the news.

Stage 4 squamous cell cancer. The tumor had infected about 70 percent of his tongue. Doctors needed to operate immediately - to cut out three-quarters of his tongue in order to save his life.

"That's not gonna happen," Achatz muttered, too stunned to say more.

Kokonas sat beside him, head spinning. The best young chef in the country had tongue cancer and doctors were saying the only hope was to remove his tongue. It's Shakespearean, Kokonas thought.

"If we don't take out his tongue," the surgeon had said, "there will be no life."

At the University of Chicago Medical Center, oncologist Everett Vokes read the paper and wondered if he would see the stricken chef.

Achatz walked into his office a few days later.

By now, three top cancer specialists from around the country had told Achatz that it was necessary to remove his tongue. But one doctor had also mentioned an alternative approach being practiced at the UC Medical Center.

Even by the standards of a cancer clinic where the random cruelty of disease is witnessed every day, doctors were struck by the irony of Achatz's case. He didn't fit the profile for a tongue cancer patient: He had never smoked, he drank just one glass of champagne a night, he was fit and healthy and young.

"It was just this enormous human tragedy," said Vokes, who heads a team that specializes in trying to save organs, rather than remove them. The team includes Dr. Elizabeth Blair, a head-and-neck surgeon, and Dr. Daniel Haraf, a radiologist.

Instead of the standard therapy - removing the tumor surgically, followed by radiation and chemotherapy - they would reverse the order. Aggressive chemotherapy, using promising new drugs, followed by radiation to shrink and kill the tumor. Surgery might still be necessary later, but it would be less radical. For now, they would focus on saving his tongue.

They warned Achatz that it would not be easy.

His tongue would feel torn to shreds by radiation and he would probably lose his taste for a year. His face would turn into a hot red rash and he would have to wear a burn mask. He would temporarily lose his hair and his appetite. To be safe they would remove his lymph nodes.

"We were offering him six months of pure misery," Haraf said. "But we were also telling him that there was a 70 percent chance that he would be cured."

"Where do I sign?" Achatz asked.

When the side effects kicked in, Achatz let his boys pull out tufts of hair. He wore a Mohawk to work before it fell out completely. He made cancer jokes in the kitchen.

Most of all, Achatz made it clear to everyone - his staff, Sperling, Kokonas - that he considered cancer an unpleasant interruption, not a death sentence. Illness, he insisted, would not affect his standards or his creativity.

If Beethoven had composed some of his best music after losing his hearing, Achatz could continue to create amazing dishes, even if he couldn't taste.

The fact is most of his dishes are conceived in his head, not on his tongue. Scattered thoughts, ideas, scents. Achatz is continually jotting notes on paper napkins and then sketching great squiggly drawings of what his concoctions will look like.

His understanding of ingredients didn't die with chemo, Achatz pointed out. Nor did his flavor memory. And though he no longer trusted his own palate, he did trust that of sous-chef, Jeff Picus, who had worked with him for years at Trio.

But all the mental fortitude in the world couldn't conceal the horror of being strapped onto a gurney, his head locked into a fiberglass mask, a huge black radiation machine humming as it gunned deadly rays into his tongue.

Achatz's face burned. He couldn't swallow. He couldn't eat. His mouth became a raging, itching mass of pain and even sipping water hurt. He spent some nights throwing up pieces of burned skin.

"I'm barely hanging on," he text-messaged his friend Hopper at one point. "This is hard, even for people like us."

Doctors don't like to single out one patient as more extraordinary than the next. Some of the most determined succumb to disease, no matter how hard they fight. But they marveled at Achatz's stoicism and resilience. He remained an outpatient, even during the worst days of radiation. He refused a feeding tube, forcing himself to try and swallow, no matter what, because doctors said that would speed recovery.

In mid-December, after his lymph nodes were removed, Achatz nervously returned to the hospital for a final checkup. He still couldn't taste and his immune system was spent. He would need physical therapy, speech therapy, swallowing therapy and it would probably be a year before he would feel normal again.

But the scans were clear. The cancer was gone.

"Onward," he told his staff.

Achatz has now been cancer-free for five months and doctors say they are "incredibly hopeful" about his long-term chances. Medically, he is considered in remission. Doctors won't declare Achatz "cured" until he is cancer-free for two years.

His sense of taste is returning slowly. Sweetness came first and then saltiness. Some days he has more sensation than others. And some days it simply doesn't matter.

On Monday nights when Alinea is closed, Achatz sometimes slips into the kitchen with Kaden, 6, and Keller, 4. The boys clamber onto stools at the gleaming, stainless-steel counter and squeal in delight as they stir pots of white smoke. Carefully, they add sugar and milk. They sprinkle in black vanilla beans.

Then, in the best restaurant in America, they sit down with Dad - the super chef who lost his sense of taste - and devour the best homemade ice cream in the world.