Life, on the Line (51 page)

I grabbed the worm and began to thread it on the hook. The worm thrashed about in my hand and finally succumbed. Both boys were mesmerized. I handed the rod to Kaden and pointed to where he should cast. He fired the rig into the water, spun the crank to lock the wheel, and stood quietly.

I was about to start getting Keller's pole set up when Kaden spoke up over his shoulder. “Hey, Dad—do you think the hook hurts the worm?”

“Nah. You can cut them right in half and they still live. Want to see?”

“No thanks, Dad.”

A few seconds of silence passed, and then Kaden spoke up again. “Dad. Can worms get cancer?”

I froze. I instantly knew that their worry and understanding far surpassed my expectations. The news of my cancer was all over the newspapers and the TV. It was unavoidable even for a six-year-old.

“I suppose they can. But I doubt it would hurt them. Look how tough they are.” I motioned to the worm I was hooking on Keller's pole.

He paused for a minute and I thought he was going to drop the subject. Then he said, “Yeah. But you're pretty tough, too, Dad. It's not going to kill you.”

My heart sank. I grabbed him, put him in a headlock, and gave him a noogie with some underarm tickling.

“Yup. I'm as tough as a worm.”

 

Heather and I were seeing each other seven to ten days a month, taking turns making the commute from Chicago to New York. I planned a two-day trip to see her before she went to Bethesda, Maryland, to visit her family. I had not yet met her parents, but I could sense she wanted me to come along. I was incredibly apprehensive. After all, I was nine years older than her, had two sons from a previous relationship, and, oh yeah, stage-four cancer. That was a good amount of baggage to bring into any relationship, and no parent could be happy that his or her daughter was bringing that guy home. Despite that, I suggested I stay an extra day and head down with her to see them.

We pulled up to the curb and got out of the cab to see her parents, sister, and grandmother excitedly squeezing through the doorway all at once to come out and greet us. Her mother hugged us both simultaneously and all of my fears about not being accepted vanished.

After the general introductions and small talk, Heather and I got right to work. Dinner, of course, was the plan. We quickly dispatched Doug, her stepfather, on a shopping mission while we started kneading pasta dough and making a marinade for the fish he was picking up. Her mother set the table on the back patio, lit candles, and gathered basil, oregano, and rosemary from the garden.

We banged out dinner in record time, all the while sipping wine and chatting with her family: fresh pasta with tomatoes, garlic, and herbs; scallops grilled over rosemary branches; grilled bass marinated in orange juice and herbs. Heather roasted some grapes with Pedro Ximenez to spoon over Greek yogurt for dessert. As we sat on the back porch eating by candlelight in the peaceful summer night, Chicago and cancer felt far away.

Thomas and Laura had commented on my normal appearance during our meal at Gramercy a few weeks earlier, and I had even felt bold enough to tell Nick and Heather that I thought maybe, just maybe, the drugs wouldn't affect me at all. Nick told me I was delusional. He was always trying to prepare me, but I thought he was wrong. Turns out, he was right.

After dinner Heather and I laid down on the couch, unable to do much more since we were stuffed. She was rubbing my back and running her fingers through my hair as we chatted with her mom when she stopped and I heard her say, “Uh, oh.”

I turned to see her staring at her hand. It was full of light red hair. The drugs were starting to take full effect. My cells were starting to divide more slowly, to die off.

I returned home the next day and decided I had to shave my head. My hair was pouring out of my head in a steady stream and even a slight breeze would leave a blanket of hair on my shoulders. I couldn't risk it coming out in the food while I worked. Facing the inevitable, I decided to try to have fun with it.

With Kaden and Keller flanking me on the couch while we watched
Dirty Jobs
on the Discovery Channel, I asked them if they wanted to do something crazy. Of course they said yes, so I encouraged them to pull out my hair. Keller was the first to take me up on my offer. With a devilish look he pinched a small amount between his thumb and index finger and tugged. He winced, anticipating my reaction to what he thought was a painful act. He didn't even notice the hair between his fingers.

“Holy cow, Dad, look at your hair!” Kaden shouted, pointing at the clump in Keller's hand. “Can I try?”

The boys took turns yanking hair from my head, each grasp becoming larger and larger as they laughed hysterically. They could only reach the sides, right above my ears, so after a few minutes I got up and looked in the mirror. I had the start of a Mohawk. Perfect. I figured I would take it a step further and surprise the Alinea staff with a cleanly shaven hawk. That was more than a bit out of character for me, but perfectly in character for many of them. The boys helped me shave the sides and back as best as we could and then we walked over to a cheap chain barbershop to have them clean it up.

When I sat in the chair and removed my baseball cap the hairstylist recoiled visibly. “I told them they could give me a trim,” I said, pointing to the boys, “but they didn't do such a good job.” The guys howled with laughter as she tightened up our handiwork. I slapped my cap back on and returned home. I snapped a pic of myself with my phone and e-mailed it to Nick. The phone rang ten seconds later. “You look like a serial killer. Psycho, man. Love it,” he said.

I walked into Alinea the next day with a full-on Mohawk. For me it was a simple attempt to lighten a serious situation and put the team at ease. Of course at this point, everyone knew I had cancer and was undergoing treatment, but this was the first time the side effects of treatment made it obvious that something was happening to me. The staff responded in an act of solidarity and either shaved their heads or crafted Mohawks of their own. Sommelier Scott Norman, an employee I'd worked with since Trio—and who himself is without kidneys and has been through countless surgeries—Mohawked his goatee, since he already had a shaved head. We may have looked nuts to our high-end customers, but I had never felt a tighter bond in the restaurant.

Each fall StarChefs.com holds the largest culinary industry conference in the United States, bringing the top names in food to New York for three days to share ideas and socialize. Heather worked for StarChefs, and she persuaded me to take part in the conference that year. The planning for these events happens months in advance, and I was scheduled to give a demonstration on the main stage. But after my diagnosis, Heather let the organizers know that I wouldn't be participating. In addition to being preoccupied with my predicament, my doctors had also asked that I not plan any travel, just in case. I had participated in many of these types of events around the world and always found it challenging to decide what to show my colleagues. The audiences consisted of the leading names in the industry, and the goal is to show a totally original concept that would blow everyone's mind. Once I was officially removed from the docket, I joked to Heather that I was completely at ease now that I didn't have to rack my brain for a brilliant idea to show the industry. Cancer was a terrific excuse for mediocrity. But the reality was that I wanted desperately to go and prove that I was still alive, still working, still creating food. And I also wanted to show support for Heather's efforts in producing this event.

My body was in steady and rapid decline at this point, and I hadn't even started radiation yet. A rash resembling pubescent acne began to cover my face and arms, my skin was dry and cracking, and I was temporarily sporting a Mohawk on my way toward baldness. Going to work in this condition was uncomplicated. I spent sixteen hours a day around the same group of fifty people. They knew me well and they viewed me as the same chef I was before I got cancer. The staff worked harder than ever to maintain standards, even while it must have been hard on them to look at me as a daily reminder of their own mortality. But they didn't show it. Alinea was the most comfortable place for me to be every day, because I had exactly the kind of support I needed.

I didn't, however, want to embarrass Heather or myself. I looked terrible. Heather had last seen me prior to shaving my head—when I still looked fairly normal. Over the subsequent ten days the shit had hit the fan. The rash had come on strong, I had lost ten pounds, and my head was now completely shaven. For the first time, I looked like a cancer patient. She knew I wanted to come to the conference and encouraged me to attend, but I worried she would freak out when she saw me.

The nausea was near constant now and my energy was waning as well, but I decided nonetheless to go. Heather was moderating a panel called “From Kitchen to Cookbook” with Jeffrey Steingarten, publishers Ann Bramson and Will Scwalbe, and literary agent Lisa Queen. I was invited to join the discussion. I needed to prove to myself and the culinary world that I was still relevant.

I arrived at Seven World Trade Center and called Heather so she could come out and meet me. She greeted me in the lobby with a giant hug and kiss, burying her face in my shoulder to try to hide her sudden tears at seeing me look so frail and sick. Then she grabbed my hand and led me up the elevator into the mass of people milling about on the conference floor. Most people didn't recognize me, and I was incredibly self-conscious. I couldn't believe Heather wanted to be seen showing affection toward me looking like I did. It gave me strength to press through.

The panel was scheduled just after I arrived, so I jumped right in. I'm sure at least part of the crowd had no idea who I was until Heather introduced me. I kept a bottle of water by my side and hoped my voice wouldn't give out. I did reasonably well and even managed to crack a few jokes and earn a few real laughs from the audience. After the discussion, a few of the attendees came up and asked for photos with me.

Other chefs greeted me throughout the night with a hug and a pat on the back, followed by conversation as usual. Everyone went out of his or her way to act as though nothing was different, but not in a way so as to not acknowledge the elephant in the room. Ultimately, I was grateful to them. I even agreed to join in as a judge on a “Best Pacojet Dish” competition, even though I know some people wondered if I could even taste.

At this point, taste was not an issue.

I
had dreaded the chemo because I had heard about all of the nasty side effects. The reality was that I was in far better shape after twelve weeks of Erbitux and traditional cancer therapy drugs than I was before I started the treatment. Yes, I had a case of acne that would rival that of any adolescent, as well as some issues with basic human functioning (some of the drugs make a bowel movement nearly impossible). But the tumor had shrunk, the morphine patches on my arm controlled the pain, and I was able to speak and eat better than I had in months. I felt like it was working—and I was told by doctors that I was responding well—so emotionally I was on a high.

Then came the radiation.

I was told from the beginning by everyone on the medical team that they were going to “take me low”—almost kill me—while trying to rid me of the cancer. This included weeks of intensive targeted radiation treatment on my tongue, jaw, and neck that would burn the inside of my mouth and throat like a severe sunburn. The skin covering my tongue and throat would peel off like wrapping paper, taking with it my taste buds. Of all of the side effects of treatment, this is what I feared the most. If I couldn't taste, could I really be a chef?

I knew that the most important aspect of what I did came from within, not the ability to taste or evaluate the completed dishes. After all, I had a team of more than twenty highly trained chefs in the kitchen, some of whom had been with me for more than six years. During their time with me I had trained their palates to mirror mine through the constant adjusting and tweaking of the dishes they presented to me for final approval. I basically brainwashed them into tasting exactly as I did, and now I had no choice but to believe that they had been paying attention.

I drove myself to my first radiation treatment. A group of Chicago chefs and restaurants had offered to pool together some money to hire a driver to take me to treatments, and while that was an amazing offer from our community, I did not want to be seen as a victim. So I decided to drive myself as long as that was possible. Occasionally I would find it necessary to pull to the side of the road, vomit, and then drive on. But I had driven myself to all but the very first chemo treatment, so I planned to do the same for the radiation sessions.