Chef Grant Achatz Recalls ‘Irony’ of Losing His Taste due to Tongue Cancer: ‘Felt Like I Didn’t Have Purpose’ (Exclusive)

More than two decades ago, Grant Achatz — the visionary chef behind Chicago’s Alinea and The Aviary restaurants — noticed a little white dot on his tongue.

Being in his early 30s, experts told him there was little to worry about and chalked up his symptoms to the stress of working 14-hour days and having a newborn baby at home.

“That turned out to not be true,” he tells PEOPLE.

With the reassurance that nothing was wrong, Achatz continued life and work as usual. However, his symptoms worsened over the next four years. Not only did the spot on his tongue remain, it became temperature sensitive and he started having difficulty eating and swallowing. 

He knew there was something seriously wrong and finally visited an oral surgeon.

In 2007, at the height of his career, Achatz was officially diagnosed with stage 4 tongue cancer, which has a survival rate of less than 40%. The disease had progressed during the past four years, and the primary tumor located on his tongue had metastasized into his lymph nodes on both sides of his neck.

Never miss a story — sign up for PEOPLE's free daily newsletter to stay up-to-date on the best of what PEOPLE has to offer​​, from celebrity news to compelling human interest stories. 

Before getting the chance to come to terms with the diagnosis, the chef was given a choice of treatment, and “none of the options were good.”

“It was basically remove three quarters of your tongue and your lymph nodes or die,” he says, noting that multiple doctors gave the same prognosis. “So I was faced with a really debilitating surgery.” 

“Nobody likes to get told they have cancer, and to have tongue cancer as a chef, the irony there was pretty heavy,” he recalls. 

Achatz, now 50, decided that he was not going to accept moving forward with such a devastating outcome. So, he did his own research and found a medical team that was “willing to try something a little different."

The chef said doctors at the University of Chicago, who were “focused on organ preservation,” offered him the opportunity to join their clinical trial. Under their plan, Achatz underwent chemotherapy and radiation.

Unfortunately, Achatz lost his sense of taste and smell after a month.

“I was like, if I can't taste and I can't talk, how can I be a chef? If I wasn't able to do that passion that I've loved for so long, I really felt like I didn't have a purpose,” he says. “They never knew if my taste would come back, and they didn't really know if I was going to live. So when you face those situations, it's really just a big, let's wait and see.”

Despite the uncertainty, Achatz decided to stay optimistic and continue to work at Alinea during his treatment. He couldn’t see himself giving up his passion, so he trusted his sous chefs and relied on his technique to keep cooking.

“You have to navigate your way through that. It's about determination and grit,” he admits. “I just went to work every day. That was my safe place. That was where I was most comfortable and that's what I loved.” 

“As time goes by and the doctors tell you that it seems like the tumor is not coming back, then you start to ease your mind,” he adds. “But it was still a year and a half without the ability to taste or smell.” 

A year after treatment, Achatz says he was declared cancer-free. Slowly but surely, he regained his senses.

The PEOPLE Puzzler crossword is here! How quickly can you solve it? Play now!

Now, 17 years after his diagnosis, Achatz, alongside registered dietitian Abbey Reiser, is partnering with Johnson & Johnson to launch Tasting Notes, an educational campaign providing expert-backed guidance and practical solutions to patients navigating dysgeusia — altered or distorted taste.

“Most people have very little experience with the severity of illness right off the bat. Nobody really knows what it's going to be like,” the Michelin star chef explains. “I really try to raise awareness, especially in young people, and talk to them about loss of taste and give them some guidance, reassure them that this is manageable and give them some pointers on how to navigate it.” 

Additionally, Achatz — looking back on how his cancer journey could’ve gone — is stressing the importance of advocating for one's health, even when the prognosis may be grim.

“You have to be your own advocate,” he tells PEOPLE. “I went to four very well-known prestigious hospitals and they all told me the same thing, which was antiquated, barbaric treatment that would've left me severely impaired. So you have to be an advocate when you get a diagnosis. You have to get a second and third and fourth opinion.”

“You have to be strong,” Achatz says.