I was diagnosed with stage IVB squamous cell carcinoma of the tongue in 2007, when I was just 33 years old, but the cancer had started to show itself long before then. I first noticed a white dot on the left side of my tongue in 2002, and as time went on, the sore became annoying and hurt when it rubbed against my teeth.
Visits to the dentist eased any concerns I had. “You are working 18 hours a day, raising two young children, and are stressed. Chances are you are biting your tongue at night when you sleep,” said my dentist. I had no reason to doubt him. I was young, I never smoked, and rarely drank. The possibility that I could have a life-threatening disease was the last thing on my mind.
My restaurant Alinea, which I had opened 2 years earlier, had just been named the Best Restaurant in America by Gourmet magazine, and all my attention was focused on creating the next menu. Still, I wasn’t ignoring my symptoms. As the sore on my tongue got bigger and more painful, I saw another dentist who essentially confirmed what the first dentist said and fitted me for a mouth guard. She later sent me to an orthodontist to correct an overbite she thought was the cause of the sore.
As soon as the orthodontist looked into my mouth, she told me I would need to see an oral surgeon for a biopsy. It was then that I found out that I had advanced-stage tongue cancer that had metastasized to the lymph nodes in my neck.
Seeking Better Options
The news was stunning—and would get worse. I had been complaining about the pain in my tongue and the golf ball–sized swollen lymph node on the left side of my neck for years, and no one, not my dentists or primary care physician, ever expressed any concern that I could have cancer. In hindsight, perhaps I should have been more assertive in asking questions and challenging their diagnosis. I wouldn’t make that same mistake again.
When I met with an oncologist in Chicago, he told me that my stage IVB disease and neck metastases would require radical treatment, including neck dissection and removal of 75% of my tongue. The protocol was a sure career-ender for a chef who needs his taste buds to create the unusual mixture of flavors and scents that are the hallmark of the progressive American cuisine served at Alinea.
The treatment would also include chemotherapy and radiation, and after it was completed, said the oncologist, not only would I lose my ability to taste food, my ability to speak and swallow would be severely compromised. He also said my chances of surviving longer than 2 years were slim.
I went to two other cancer centers in Chicago and one in New York for additional opinions, and the oncologists all agreed with the proposed treatment protocol and prognosis.
Being a chef isn’t just my vocation; it’s my passion. I considered my options. If I could no longer do what I love, and the quality of my life was going to be so diminished, with a good possibility I wouldn’t survive long anyway, then I would decide against the treatment.
Thinking Outside the Box
My close friend and business partner Nick Kokonas said, “We need to find someone who thinks about medicine the way you think about food: outside the box.” Nick made an appointment with Everett Vokes, MD [John E. Ultmann Professor of Medicine and Radiation Oncology and Physician-in-Chief, University of Chicago Medicine and Biological Sciences], and that was the game changer.
Dr. Vokes suggested that instead of doing surgery first, then chemotherapy and radiation, the plan could be reversed. He and his team put me into a clinical trial that included a combination of four chemotherapy drugs, two of which were cetuximab (Erbitux) and cisplatin, followed by targeted radiation therapy. Dr. Vokes told me that even if the chemotherapy and radiation didn’t completely eliminate the tumor, they would reduce it enough so that surgery would be less invasive.
Within 2 weeks of beginning my chemotherapy regimen, the tumor started shrinking. Five months later, after I had completed 12 rounds of chemotherapy and 65 radiation treatments, my cancer was in remission. My tongue and neck were spared, and I’ve been in remission for 6 years.
Although I continued to work throughout my treatment, it was tough. The radiation burned my tongue, destroying my taste buds, and shed the lining of my esophagus. I had to rely on my staff to taste the food for me. Even after the treatment ended, it took about a year before my sense of taste was completely restored.
I know it sounds crazy, but I really believe that having cancer has made me a much better chef and entrepreneur and improved my life. The experience taught me it was okay to let go of some of my control in the kitchen and trust the talent of my staff so they could grow in their careers. It also gave me a greater willingness to take chances, which led to the opening of two more restaurants.
Discovering New Ways to Treat Cancer
Having cancer has also given me a greater appreciation for the importance of cancer research, and each year we hold fundraisers at our three restaurants. Thus far, we’ve raised approximately $1 million for head and neck cancer research at the University of Chicago. We want to encourage the pursuit of cutting-edge research so physician/scientists can discover new approaches to treating cancer, and more patients like me can not only live but thrive after their diagnosis. ■
Grant Achatz lives in Chicago and is the executive chef and co-owner of Alinea, Next, and Aviary. He is the coauthor of Life, on the Line: A Chef’s Story of Chasing Greatness, Facing Death, and Redefining the Way We Eat (Gotham Books, 2011). In 2008, a year after his cancer diagnosis, Mr. Achatz was named Best Chef in America by the James Beard Foundation.