Burned
Thirty-three-year-old top chef. Stage-four cancer of the tongue. Grant Achatz has been to hell—and back
(page 3 of 6)
At first, Achatz says, he could not quite absorb the blow, in part because he knew very little about the disease. A physical examination at Advocate Illinois Masonic preliminarily verified the results of the biopsy: The little white dot had become a tumor about the size of a toddler's thumb; the mass was rigidifying his tongue and the malignancy had likely spread to the lymph nodes in both sides of his neck. "I'm a cancer idiot at this point," Achatz recalls. "I didn't even know that stage four was the highest level. I thought maybe there's ten stages." He was also shocked to hear the doctor's recommended treatment: In order to save his life, the doctor said, it would be necessary to surgically excise the tumor by cutting away most of his tongue and possibly part of his jaw, if the cancer had spread there. It might be possible, the doctor told him, to reconstruct his tongue using a piece of muscle from his arm. The chef could not believe what he was hearing. "I was like, You're going to cut my tongue out? There's no way! There's just no way!" Achatz recalls.
Three days later, Achatz flew to New York City and underwent PET scans at Memorial Sloan-Kettering, the renowned cancer treatment center; the imagery later confirmed that the cancer had spread to the lymph nodes but, luckily, not the lungs. That day, he also met with a Sloan-Kettering cancer surgeon who recommended the same grim approach: cut out the tongue, as well as part of the jaw, to save the life. Achatz asked the surgeon to elaborate, which he did by drawing a picture that showed the size and the location of the tumor and an incision line that encompassed the entire organ except for a crescent-shaped sliver—in other words, a near-total glossectomy. Tasting and swallowing, the surgeon said, would be "severely compromised." And talking with a quarter tongue? "This guy mimics how someone would talk and it wasn't even talking; it was like grunting," Achatz recalls. "It was barbaric." And if he chose to do nothing? The doctor told him he would be dead in four months.
With that visit, any hope Achatz had for good news evaporated. "Best cancer clinic in the country," he remembers thinking. "They're either going to tell me I don't have cancer, or it's a different kind, or it's treatable. Crushed that." He spent the next few hours tearfully talking through his options with his girlfriend, Heather Sperling, a food writer who lives in Manhattan. They poured strong gin cocktails, at 11 in the morning, and sat on the roof of her apartment building. He wondered what would be better for his boys—the presence of a disfigured father, or to die and let them simply forget. Maybe Angela, his ex-wife, would remarry, giving them a new dad, one who could talk, who could eat, whose disabilities they wouldn't have to explain to their friends.
Later that afternoon, Achatz broke the news to his staff by speakerphone from Sperling's apartment. By now, he was barely able to eat and had lost about 20 pounds. He had been looking increasingly haggard, but only a few people at the restaurant knew that something was ailing him physically, even as some cooks noticed that he had stopped eating solid food during staff meals. Nick Kokonas, Alinea's principal investor and Achatz's business partner, gathered with everyone around a telephone in one of the restaurant's dining rooms. Forcing himself to talk over the pain, Achatz tried to sound upbeat about his prognosis and the future of the restaurant—but he could sense that the staff was stricken. "I had to ask three or four times if we had gotten disconnected because there was zero sound on the other side of the phone," he remembers. "Nobody was laughing at my jokes, nobody breathing, no nothing." On the Chicago end of the connection, Kokonas says, people were stunned; after the call, a couple of cooks who were close to Achatz went outside to cry in the alley.
Within a few days, Achatz met with Harold Pelzer, the head-and-neck cancer surgeon at Northwestern Memorial Hospital who had operated on Roger Ebert's salivary glands in 2006. Pelzer told Achatz that surgery indeed represented the first line of defense in cases like his. "If your question to me is, By your experience, Dr. Pelzer, what is the absolute best way for me to try to cure this disease regardless of functional deficiencies? I would say radical surgery followed by chemo and radiation," Pelzer said to Achatz. However, since Achatz already had an appointment to see Vokes at the
U. of C. to get another opinion, Pelzer reassured the chef that Vokes's approach—start with chemotherapy and radiation to shrink the tumor, and spare the organ if possible—was an attractive alternative, one that Pelzer believes could become the standard of care in the future. "Music to my ears," Achatz says.
* * *
Did you like what you read here? Subscribe to Chicago Magazine »
Comments are moderated. We review them in an effort to remove offensive language, commercial messages, and irrelevancies.
Reader Comments:
This is a hell of a story. Thanks for sharing it in such a clear, unsentimental way. It's impossible not to root for the guy.
Amazing story. Really nice guy.
Thanks U of C for continuing to push the envelope.
This story is very important in stressing to people of all ages to have a regular oral cancer exam. Please ask your dentist to do so at your next visit. If they don't do it regularly, perhaps you should find a dentist who does. It may save your health or even your life.
Many more people die from oral cancers that cervical cancer. There are now simple, inexpensive screening tests using dyes, or lights, or painless tissue sampling that should be done annually.
When enough patients demand that insurance companies cover these tests, they will eventually cover the costs, as happened with Pap smear testing years ago.
Early detection is the key to successful treatment.
Greg Weathers, DDS
I told my daughter in CA about this wonderful article, in the hope that a friend of her's out there who has a similar disease could benefit from reading this and perhaps find some hope---even if it's making an appt with this miracle physician. God bless you for articles such as these---and my best wishes and prayers to the Chef!
This article has so many good examples of the difficulties cancer causes that it should be read by everyone from 9th grade on to learn how persons with the best intentions can be wrong, can rely on wrong information, disagree as to what they see or know and how much depends on luck and courage.
Hi there,
My name is Kate and I amd 34 and was diagnosed with tongue cancer in Febuary 2007. I am a non smoker and only drink socially- just wine and beer. I too am a very unusual case.
I had a near total glossectomy with 2 skin grafts 3 rounds of cisplatin and 33 rounds of imrt. I finished last May and I had been cancer free since then. I am back to working full time since July of 2007.
My recovery has been very difficult. I can speak fairly well.I do not sound like I am "grunting" when I talk. I have aspeechimpediment but I communicate fairly well with my friends co-workers My doctors would say I am 90% intelligable. I even talk on the phone. Yes it is true that many full glossectomy patietns do have to rely on a feeding tube and or can only drink thier food but it is not true for every person. Also- there are tastebuds all over the oral cavity- the tastebuds are not just on the tongue. The sense of smell plays a large part of taste.
It as a very arduus process to relearn to eat but I got my feeeding tube removed in August of 2007 now I eat almost everything I want to and almost like a regular person. I just need lots of water and I have to take small bites. I taste really well. I don't get to enjoy food for as long as I used to and its not 100 percent but its pretty good. I live in San Francisco and eat out ALL THE TIME. I eat at plenty of trendy fancy places just like Alinea and enjoy them thoroughly!
I hope that Grant's response to his treatment is 100 percent successful but the alternative treatment isn't neccesarily as horrific as you have portrayed it here. Many Physicians feel that my treatment plan was the best option so that I could live.
Maybe my experience response and recovery is one in a million. I don't know. Maybe you could all have dinner and you write a followup article to this?
Grant if you are reading this I plan to visit Chicago this summer. Iwill be CALLING and making a reservation. So you better be on top of your game the night I come in!
Sincerely,
KATE BROWN
It was great to read this article. He has been on my mind since I first heard of his diagnosis. As he was beginning his treatment at U of C. my Daughter Christa was being seen and had since Jan '07 undergone chemo (Erbitux, cisplatin) and 35 treatments of IMRT. The Doctors felt the tumor to be gone! However, residual was found.....U of Wisc. Surgeon attempted surgery unsuccessfully, because tumor had wrapped itself around her carotid artery. We saw the Drs. at U of C and she was scheduled for a major reconstruction which margins were clear on! But,she lost her tongue and had various complications following the surgery. Then began 'clean up' radiation and chemo. Only to find that the tumor cells had traveled and grew rapidly. She lost her 10month battle on November 5th. It is an evil ugly disease. She had only found a small sore on her tongue then suddenly was a big cancer tumor! Her only initial symptom, in retrospect was a pressure in her ear and soreness at the TMJ, then this sore believed, also to be her chewing on her tongue!
PLEASE, if we can only get this information out there for all! This disease is being seen in young, no risk people more and more frequently, with devastating consequences. Christa also had become quite close friends with Kate Brown from SF, on the Oral Cancer Foundation site. They became deeply bonded in their battles against this evil disease.
PLEASE, IF ANY SYMPTOMS, INCLUDING EAR PRESSURE, SORES APPEAR...DON'T SETTLE FOR THE DIAGNOSIS OF CHEWING ON IT, SINUS TROUBLE...PURSUE TILL YOU ABSOLUTELY KNOW IT IS NOT ORAL CANCER!!! PREPARE FOR THE WORST AND HOPE FOR THE BEST.
Sincerly, Linda Jones
OH! Christa was only 31 years old, with a 2 year old daughter and soulmate husband. Absolutely no risk factors for her either! The Doctors at U of Chicago are wonderful, and at the cutting edge of treatment.
I was diagnosed on Jan. 10th, 2008, with Squamous Cell Carcinoma at the base of my tongue. I had Cisplatin and 60 radiation treatments (2 per day/30 days) and the doctors are pleased with the tumor reduction. However, I will have surgery (I'm waiting on a date) to remove what remains. I already have a feed tube (for 1 month) and they will go ahead a perform a trache at the time of surgery due to the anticipated swelling. I am a 51 year old male in Jacksonville, Florida who could use your prayers. :)