The award-winning culinary trailblazer has a message for hope for others facing post-cancer changes.
For a chef, having a keen sense of taste is everything. When world-renowned chef Grant Achatz of Chicago’s three-Michelin-starred restaurant Alinea learned he had stage 4 tongue cancer while at the height of his career, he ended up choosing a radical treatment that spared his tongue—but left him unable to taste. His sense of flavor eventually returned, and he has now been cancer-free for 17 years.
Today, he’s using his experience to support others. Johnson & Johnson has partnered with Achatz to launch Tasting Notes, an educational campaign with expert-backed guidance and practical solutions. Up to 80% of cancer patients face taste changes—known as dysgeusia—during treatment, according to the campaign. Together with registered dietitian Abbey Reiser, Achatz is working to help patients and caregivers explore flavors, maintain nutrition, and rebuild confidence in eating.
In a conversation with The Healthy by Reader’s Digest, Achatz shared the top tips he gives to people navigating treatment that takes away their sense of taste. He also opened up about the first signs of his cancer, how he advocated for his own care, and the very first food he was able to taste again.
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The Healthy by Reader’s Digest: Grant, first off, we’re wishing you the best, and we’re so grateful you’re sharing your story. How are you doing today, and how are you feeling physically since your remission from tongue cancer in 2007?
Grant Achatz: You know, it, it never really leaves you completely. There are always either a mental reminder or triggers—and the treatment was pretty intense. Radiation is a very powerful thing. That is both good and bad, right? So it certainly eradicates the illness, but it leaves a lot of destruction in its path. You know, things like atrophy, swallowing, that sort of stuff, it’ll be compromised forever. But you manage, you figure out ways to continue to live your life the best way you can. So, I try not to let those impact my life as much as I can.
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The Healthy: In terms of your taste, how long was it gone?
Grant Achatz: It was gone for about a year. And then it came back in stages. [It] fully returned after about a year and a half.
The Healthy: Can you share what first led to your cancer diagnosis? Were there any symptoms you noticed?
Grant Achatz: Yeah, so I had a little tiny dot on the side of my tongue that literally felt like I bit it. But it just never went away. I would go to the dentist and be like, “Hey, here’s this thing.” And they’re like, “Oh, you’re probably grinding your teeth or you’re stressed out or whatever.”
I feel like dentists have a little bit more of an elevated awareness of oral cancer in general, because it is on the rise, particularly in young people, like in their twenties. It’s probably detected sooner than it was back then, but I would encourage everyone, if they have anything that is bothering them, they should go—first to the dentist, and if that dentist sort of blows it off, they have to be their own advocate and go elsewhere.
After I was finally diagnosed, I went to five different hospitals. The first four said the same thing over and over again, like, “You might have six months to live, we have to remove your tongue, we have to remove both sides of your neck.” And that didn’t feel right. I was like, There has to be some hope. And there was, but a lot of people wouldn’t have gone through the exercise of finding that fifth hospital.
The Healthy: What was it like to face a diagnosis that directly affected your ability to taste and speak as a chef? What about as a person?
Grant Achatz: I had to rely on my team, the people that I trusted, who were right behind me. A lot of people, when they have a life-threatening illness, pull back to their family and their friends, right? They pull back to what makes them feel comfortable and safe. And for me, that was at [his restaurant] Alinea. Those were the people that I spent 15 hours a day with, you know, every day. So they were my family … this restaurant was my refuge. That’s where I felt the most comfortable.
So in some way, it was really easy to keep pushing. Even during treatment, I would come to work after radiation because it was, you know, what I loved and what I wanted to do; it made me feel better,
The Healthy: Up to 80% of people undergoing cancer treatment experience taste changes. You’ve lived through that yourself while leading one of the top-rated restaurants in the world. How did you begin to reimagine food and flavor when your ability to taste was gone?
Grant Achatz: A lot of it was smell. I feel like the way I presented food at that time pivoted a bit, and there was a little bit more emphasis on the visual because I could have satisfaction out of bringing that to fruition and to look at it and analyze it more so than being able to taste. So there were a lot of elements that I think became elevated to compensate, and that’s not uncommon, right? In fact, it’s very common for people that lose the ability to have some sort of sensory perception and to have the other ones sort of elevate and compensate.
The Healthy: You’ve recently launched the Tasting Notes campaign to support people going through taste changes during cancer treatment. Can you tell us more about what it offers, and what you hope patients and their loved ones will take away from it? What’s the first thing you tell people facing a frightening side effect of cancer?
Grant Achatz: People need to know that there are options and ways to navigate. While it’s hard, every person’s illness is different. The way people react to it is different. But it’s not the end. Spreading that awareness and giving people hope, and literal options to navigate better, so that there isn’t a social stigma. Restaurants are activities that enter our social lives—it’s where we hang out with friends and family and celebrate milestones and all of these things. It is important for them to know that because they’re not able to maybe enjoy it the way everyone else is, or maybe they can’t even consume … Maybe even swallowing is compromised.
In that moment, that is not the important aspect of what’s happening. I tell people that are really self-conscious of that: “You have the best excuse in the world. You went through cancer. Who is going to look down on you?” You made the effort to participate in this occasion with them, and you’re not able to eat because you had this really bad illness. If they make you feel bad [about that], you shouldn’t be hanging out with them anyway. You have to have that support system and have that bubble—that protective bubble.
The Healthy: What are one or two practical tips from the program that you think could make the biggest difference for patients—and for the family or friends supporting them?
Grant Achatz: I tell people to focus on the foods that they enjoyed previously and start there. They probably will have to over-season their food a little bit compared to what they were used to, in order for them to be able to perceive certain elements of it. The big one is really food that has a strong aromatic component. Because if you really think about flavor, you have five sensory perceptions on the palate. But if I said to you, “What does a strawberry taste like?” What really makes a strawberry a strawberry is the smell. So a lot of herbs, a lot of spices, a lot of ripe fruit, a lot of vinegars that are powerful. All of those things really, really help flavor perception and taste.
The Healthy: What was it like for you when your taste started coming back? What was the first food that you remember tasting?
Grant Achatz: It was coffee. At that time, I was really, really underweight because, going through the treatment, you don’t really eat much. And so the doctors were encouraging me to take in calories, however I could possibly get them into my body. The easiest way was that: sugar and fat. So I woke up in the morning, I was on my way to the hospital, and I poured myself a big cup of coffee with sugar and heavy cream. And when I took that first sip, I was expecting zero. And all of a sudden, my mouth was able to perceive that sugar. And it was a moment.
Because, you know, at that point, they could never tell me with certainty that it was going to come back. So when I had that first little glimpse of that, the optimism. If it is only sweetness, fine. I live on ice cream and dessert the rest of my life, and that’s better than nothing. About three or four months later, I was able to perceive salt.
The Healthy: What’s one self-care habit you refuse to skip now?
Grant Achatz: I feel like it’s exercise. It’s almost cliche. What I find for me is not only the physicality of it and the health benefits to the body, but for me to have that hour every day that I put my headphones in, and I’m completely in my own head. That mental self-care is more important than this and so I really encourage people, and it doesn’t have to be strenuous. It could be a walk around the block, it could be, you know, whatever you do at home, or if you go to the gym, I feel like this is really impactful.
The Healthy: What’s your workout of choice, and what are you listening to?
Grant Achatz: I lift a lot of weights, a lot of free weights, and then my wife and I do a lot of walking in the warm weather. If I’m working out, it’s Eminem or old Rage Against the Machine. I like to be moving.
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This interview has been edited for length and clarity.
