It's Not About the Bike: My Journey Back to Life (14 page)

“That’s my boy,” she said. “Son, you’re going to be just fine.”

THE NEXT MORNING I RETURNED TO MY REGULAR

room to begin chemotherapy. I would stay in the hospital for six more days, receiving treatment, and the results would be critical.

I was still reading up on cancer, and I knew that if the chemo didn’t arrest the disease, I might not make it, no matter how successful the brain surgery had been. All of the books spelled out

my status succinctly. “Patients whose disease progresses during cisplatin-based

chemotherapy have a poor prognosis with any form of treatment,” one book said.

I flipped through an academic study on testicular cancer that listed various treatments and survival rates, and in the margins I made calculations and notes with a pencil. But still, it all

came down to the same thing: “Failure to achieve complete remission with initial chemotherapy is associated with a poor survival,” the article stated. So there it was in a nutshell: the chemo

would either work–or not.

There was nothing to do but sit in bed and let the toxins seep into my body–and be abused by nurses with needles. One thing they don’t tell you about hospitals is how they violate you. It’s

like your body is no longer your own, it belongs to the nurses and the doctors, and they are free to prod you and force things into your veins and various openings. The catheter was the worst;

it ran up my leg into my groin, and having it put in and then taken out again was agonizing. In a way, the small, normal procedures were the most awful part of illness. At least for the brain

surgery I’d been knocked out, but for everything else, I was fully awake, and there were bruises and scabs and needle marks all over me, in the backs of my hands, my arms, my groin. When I

was awake, the nurses ate me alive.

Shapiro came by and said the surgery had been a complete success: they had removed the lesions, and there was no sign of more. I had no intellectual or cognitive disturbances, and my

coordination was fine. “Now it’s a matter of hoping like hell it doesn’t come back,” he said.

TWENTY-FOUR HOURS AFTER BRAIN SURGERY, I WENT out to dinner.

As Shapiro promised, I rebounded from the operation quickly. That evening, my mother, Lisa, Och, Chris, and Bill helped me out of bed to take me across the street to the Rock Bottom

Restaurant and Brewery. Shapiro hadn’t told us there was anything we could or couldn’t do, and I wanted to stick to the nutritional plan, so I put on a stocking cap to hide my bandages and we

left the hospital. Bill had even gotten us tickets to an Indiana Pacers NBA game, and offered to take me, but that was a bit much. I did okay through most of the dinner, but toward the dessert I

didn’t feel so good, so we skipped the game and I went back to my sickbed.

The next day, Shapiro came by the room to remove the bandages from my wounds. As he unwound the gauze, I could feel the fabric tearing away from the staples, as though something

was nipping at me. Then he pulled it off. I looked in the mirror. I had staples running in curves across my scalp, like two circled zippers. Shapiro said, “I’ve done my part.”

I studied the staples in the mirror. I knew that Shapiro had used titanium screws to put my skull back together beneath my skin. Titanium is an alloy used in some lighter-weight bikes. “Maybe

it’ll make me climb better,” I joked.

Shapiro became a good friend, and he continued to drop by my room to see how I was doing over the next months of treatments. It was always good to see him, no matter how sleepy or

nauseated I was. Larry Einhorn returned from Australia, and visited me, too. He was terribly busy, but he made time to see me periodically, and participated in my treatment. He, like Dr.

Nichols and Dr. Shapiro, was one of those physicians who make you understand the meaning of the word “healer.” I began to think that they knew more about life and death than most people;

they had a view of humanity that others didn’t, because they surveyed so much emotional landscape. They not only saw people live and die, they witnessed how we handled those two

circumstances, unmasked, with all of our irrational optimism and fear and incredible strength, on a daily basis.

“I’ve seen wonderful, positive people not make it in the end,” Dr. Einhorn said. “And some of the most miserable, ornery people survive to resume their ornery lives.”

I BEGAN TO GET GOOD NEWS. NONE OF MY SPONSORS

was bailing out on me. Bill and I braced for the calls to start coming in, but they never did. As the days went on, all we heard from Nike, Giro, Oakley, and Milton-Bradley were words of

support.

My relationship with Nike went back to when I was a high-school runner and a triathlete, and thought their progressive messages were cool and their athletes the most hip. But I never

figured I’d be a Nike guy, because I didn’t play in Dodger Stadium, or Soldiers Field, or Roland Garros–instead I played on the roads of France, Belgium, and Spain. Still, when my career took

off, I asked Bill Stapleton to see if he could get me a Nike deal because I yearned to belong to their company. In 1996, right before I was diagnosed, Nike offered me an endorsement contract

to wear their shoes and gloves.

I instantly became close friends with Scott MacEachern, the Nike representative assigned to cycling, and so it was no accident that he was one of the first people I told about my cancer. In

my conversation with Scott that night after returning home from Dr. Reeves’ office, all the horrible emotions I had suppressed broke loose. I started crying as I told Scott the whole story,

about the pain in my groin, and the shock of the chest X ray. After a while, I stopped crying. There was a moment of silence on the other end of the line, and then Scott spoke calmly, almost

casually.

“Well, don’t worry about us,” he said. “We’re with you.”

It was a tiny hopeful seed of a feeling; maybe I wasn’t totally ruined and alone. Scott was true to his word; Nike didn’t desert me. As I got sicker, it meant everything. What’s more, my other

sponsors responded the same way. One by one, I heard the same sentiments from Giro, Oakley, and Milton-Bradley.

They would not only stay with me, something even more remarkable happened. Bill was desperate over the matter of my health coverage. He had looked for some way I could claim

coverage, but it seemed hopeless.

Bill picked up the phone and called Mike Parnell, the CEO of Oakley. He explained what had happened. Hesitantly, Bill asked Mike if they could help me.

Mike said he would arrange for me to be covered.

Suddenly, I had reason for optimism. But then the health care provider balked; I had a preexisting condition and therefore they were not obliged to cover my cancer treatments.

Mike Parnell picked up the phone and called the provider. He informed them that if they did not cover my medical treatments, his entire firm would take its business elsewhere.

“Cover him,” he said.

The provider still balked.

“I don’t think you understand what I just said,” Mike said.

They covered me.

I’ll spend the rest of my life trying to adequately convey what it meant to me, and I’ll be an Oakley, Nike, and Giro athlete for as long as I live. They paid my contracts in full, every single

one–even though each of them had the right to terminate the deal–and none of them ever so much as asked me about when I would ride a bike again. In fact, when I went to them and said,

“Hey, I’ve started this cancer foundation [more about that later] and I need some money to stage a charity bike race,” every single one of them stepped forward to help. So don’t talk to me about

the cold world of business. Cancer was teaching me daily to examine my fellow human beings more deeply, to throw out my previous assumptions and oversimplifications.

The good news continued through that week in the hospital. After a couple of days of chemo, my blood counts improved. The markers were falling, which meant that the cancer was reacting

to the drugs. I still had a long hard pull ahead of me, and I was beginning to feel the side effects Nichols had warned me of. As I approached the end of the week, the euphoria of coming

through brain surgery wore off, and the sickness of ifosfamide took over. It gave me a constant poisoned sensation and left me so weak that all I wanted to do was stare at the wall or sleep.

And this was just the start of it; there were two more cycles yet to come.

Seven days after the brain surgery, I went home. I would be back in the hospital soon enough. But at least I was beginning to talk this thing down to size.

CHEMO

THE QUESTION WAS, WHICH WOULD THE CHEMO

kill first: the cancer, or me? My life became one long IV drip, a sickening routine: if I wasn’t in pain I was vomiting, and if I wasn’t vomiting, I was thinking about what I had, and if I wasn’t

thinking about what I had, I was wondering when it was going to be over. That’s chemo for you.

The sickness was in the details, in the nasty asides of the treatment. Cancer was a vague sense of unwellness, but chemo was an endless series of specific horrors, until I began to think the

cure was as bad as, or worse than, the disease. What a casual bystander associates with cancer–loss of hair, a sickly pallor, a wasting away–are actually the side effects of the treatment.

Chemo was a burning in my veins, a matter of being slowly eaten from the inside out by a destroying river of pollutants until I didn’t have an eyelash left to bat. Chemo was a continuous

cough, hacking up black chunks of mysterious, tar-like matter from deep in my chest. Chemo was a constant, doubling-over need to go to the bathroom.

To cope with it, I imagined I was coughing out the burned-up tumors. I envisioned the chemo working on them, singeing them, and expelling them from my system. When I went to the

bathroom I endured the acid sting in my groin by telling myself I was peeing out dead cancer cells. I suppose that’s how you do it. They’ve got to go somewhere, don’t they? I was coughing

up cancer, pissing it out, getting rid of it every way I knew how.

I had no life other than chemo. My old forms of keeping dates and time fell by the wayside, substituted for by treatment regimens. I spent every major holiday that fall and winter either on a

chemo cycle or recovering from one. I spent Halloween night with an IV in me and passed out bags of candy to the nurses. I went home for Thanksgiving and recuperated on my couch while

my mother tried to persuade me to eat a few bites of turkey. I slept 10 to 12 hours a night, and when I was awake, I was in a funk that felt like a combination of jet lag and a hangover.

Chemo has a cumulative effect; I underwent four cycles in the space of three months, and toxins built up in my body with each phase. At first it wasn’t so bad; by the end of the second set of

treatments I just felt sickish and constantly sleepy. I would check into the Indianapolis medical center on a Monday, and take five hours of chemo for five straight days, finishing on Friday.

When I wasn’t on chemo, I was attached to a 24-hour IV drip of saline and a chemical protectant to shield my immune system from the most toxic effects of ifosfamide, which is

particularly damaging to the kidneys and the bone marrow.

But by the third cycle I was on my hands and knees fighting nausea. A wave would come over me, and I’d feel as if all of my vital organs had gone bad inside my body. By the fourth cycle–the

highest number prescribed for cancer patients, and only in the most severe cases–I was in the fetal position, retching around the clock.

Dr. Nichols offered to let me do the chemo as an outpatient in Austin. “You can do it at home and we’ll consult,” he said. But I insisted on commuting to Indianapolis so that I could be

constantly monitored.

“If I get sicker, I want you to be able to see it,” I told him. “And if I get better, I want you to see that, too.”

Chemo didn’t look like anything. It was hard to believe that a substance so deadly could appear so innocuous. The drugs came in three clear plastic 50cc bags, labeled with my name, the date,

the dose, and the volume of fluid. The silvery clear liquids floated harmlessly in their plastic containers, without any precipitate. They could just as easily have been bags of sugar water. The

giveaway was the pair of heavy latex gloves the nurse used to handle the bags, and the stamp that said “Hazardous Materials.” The nurse would insert tubing into a bag, and infuse it through

another tube into my catheter, and thus into my bloodstream. One bag took an hour, another took 90 minutes, and the last one took 30.

But those liquids were so destructive they could literally evaporate all of the blood in my body. I felt like my veins were being scoured out. The medical explanation for the sensation I

experienced was myelo-suppression, the most frequent and severe side effect of chemotherapy, which is the inhibition of red blood cell production and maturation. Chemo weakens your blood.

During the third cycle, my hematocrit– the percentage of total blood volume flowing through my body–fell to less than 25, and the normal count is 46. Ironically, I was given a red blood cell

booster called Epogen (EPO). In any other situation, taking EPO would get me in trouble with the International Cycling Union and the International Olympic Committee, because it’s

considered performance-enhancing. But in my case, the EPO was hardly that. It was the only thing that kept me alive.

Chemo doesn’t just kill cancer–it kills healthy cells, too. It attacked my bone marrow, my muscle, my teeth, and the linings of my throat and my stomach, and left me open to all kinds of

infections. My gums bled. I got sores in my mouth. And of course I lost my appetite, which was a potentially serious problem. Without enough protein, I wouldn’t be able to rebuild tissue after

chemo had eaten through my skin, my hair, and my fingernails.

Mornings were hardest. I would finish a treatment shortly before dinner. I’d try to eat something, and then I’d lie in bed, watching television or visiting with my friends. The drugs would

penetrate into my system through the night, and I would wake up the next day in a thick cloud of nausea. There was only one thing I could tolerate: apple fritters from the hospital cafeteria. It

was strange, but the crispy dough, the icy sugar, and the jam-like apple filling were soothing on my tongue and stomach.

Every morning Jim Ochowicz would show up with a box full of them. He’d sit at the foot of the

bed, and we’d eat them together. Och brought me those fritters every single day, long past the point when I was capable of actually eating them.

Chemo was lonely. My mother finally went home to Piano after the brain surgery; she had exhausted her vacation time and couldn’t afford to take an unpaid leave. She hated to go; she

thought that just by being there she could make a difference.

When I was in high school she used to believe that if she kept watch over me, nothing bad could happen to me. When a norther would hit Piano and the streets iced over, my buddies and I

used to go to the Piano East parking lot, tie a snow disc to the back of a car, and tow each other around. My mother would drive up and watch us from her car. “I feel like if I’m here I can keep

you from getting hurt,” she said. She felt the same way about chemo, but she didn’t have a choice.

Och took her place, my surrogate parent and my most constant bedside companion. He made the long drive over from Wisconsin and sat with me for every cycle, day in and day out. Och

understood the slow, corrosive effects of the chemo on a patient’s spirit, because he had lost his father to cancer. He knew how demoralizing the treatment was, and how tedious, and he

tirelessly sought ways to divert me. He taught me how to play Hearts, and he sat next to my bed, dealing the cards for hours on end, with Bill and Lisa making up a foursome. He read the

newspaper and the mail to me when I was too sick to read it myself.

He took me for walks around the hospital, wheeling my IV pole, while we talked about everything from cycling to Internet stocks. One afternoon, we talked about death. We sat in the

sun on a bench outside the medical center. “Och, I don’t feel ready to go, I think I’m supposed to live,” I said. “I’m not afraid to die if I have to. But I’m still not convinced I can’t beat this

thing.”

But chemo felt like a kind of living death. I would lie in bed half-asleep, and lose track of time, including whether it was day or night– and I didn’t like that. It was disorienting and made me

feel as if things were slipping out of joint, getting away from me. Och created a routine so I could gauge the time. He brought my apple fritters for breakfast, and chatted with me until I

dozed off in the middle of a sentence. My chin would fall on my chest, and Och would tiptoe out of the room. A few hours later he would come back with a plate of vegetables for lunch, or a

sandwich he had bought outside the hospital. After lunch, we would play cards until I passed out again, my head nodding and my eyelids fluttering. Och would take the cards out of my hand

and put them back in the deck, and tiptoe softly out. Bill and Lisa were also there for every cycle, and others floated in and out of town; loyal

sponsors and old friends took turns showing up. Och, Bill, and Lisa were the core group, my social chairmen. Every evening, the three of them would bring me some dinner, or, if I felt well

enough, I would walk with them down to the cafeteria, dragging my little IV cart behind me. But I was never really up for the meal; it was just to break the monotony. Afterward we’d watch

some TV until I began to doze, and then they would leave me at about 7 P.M., and I would be alone for the night.

It became a ritual for the three of them to eat together, along with any other visitors who had come to see me, like Chris Carmichael or Scott MacEachern. They would go to the Palomino

Euro Bistro, or to a great old steakhouse named St. Elmo, and afterward they’d go to the bar at the Canterbury Hotel and smoke cigars. It was everything I would have enjoyed, if I hadn’t been

sick. In the evening when they got ready to leave, I’d say accusingly, “You guys are going to drink your asses off again, aren’t you?”

WHEN LATRICE CAME IN TO GIVE ME THE CHEMO, NO matter how sick I was, I would sit up and be as attentive as I could. “What are you putting in me?” I’d ask. “What’s the

mix?” By now I could read a chest X ray as well as any doctor could, and I knew all the terms and anti-nausea dosages. I quizzed LaTrice on them, and told her what felt better or worse from

the standpoint of nausea. I’d say, “Try a little less of this.” Or, “Give me a little more of that.”

I was not a compliant cancer patient. I was salty, aggressive, and pestering. I personalized the disease. “The Bastard,” I called it. I made it my enemy, my challenge. When LaTrice said,

“Drink five glasses of water in a day,” I drank fifteen, draining them one after the other until the water ran down my chin.

Chemo threatened to deprive me of my independence and self-determination, and that was galling. I was tied to an IV pole for 24 hours a day, and it was a hard thing for me to cede

control to my nurses and doctors. I insisted on behaving as if I was a full participant in the cure. I followed the blood work and the X rays closely, and badgered LaTrice as if I were the Grand

Inquisitor.

“Who are my nurses today, LaTrice?”

“What’s that drug called, LaTrice?”

“What does that one do, LaTrice?”

I questioned her constantly, as if somehow I was the one in charge. LaTrice coordinated the chemo with the nurses on the unit: she made out my schedule and the anti-emetic regime, and

managed the symptoms. I kept track of everything, I knew exactly what I was supposed to get, and when, and I noticed every slight variation in the routine.

LaTrice adopted an air of exaggerated patience with me. This was a typical day for her:

“What dose am I getting, LaTrice?” I’d ask.

“What’s that based on?”

“Am I getting the same thing as yesterday?”

“Why am I getting a different one?”

“What time do we start, LaTrice?”

“When do I finish, LaTrice?”

I made a game out of timing the completion of treatments. I would look at my wristwatch, and stare at the IV bags as they emptied into my body by droplets. I tried to calculate the rate of

drip, and time the end of the treatment down to the last second.

“When, exactly, is my last drop, LaTrice?”

As the time went on, LaTrice and I developed a kidding relationship. I accused her of withholding anti-emetics out of cruelty. They were all that kept me from cringing with illness

from the chemo. But I could only have a dose every four hours, so I’d hassle LaTrice for

more.

“I can’t give you more,” she’d say. “You got it three hours ago,

you’ve just got an hour left.”

“Come on, LaTrice. You run the show around here. You know you can do it. You just don’t want to.”

Every once in a while, I’d give in to the retching, and vomit so hard I thought I might pass out. “I feel much better now,” I’d tell LaTrice, sarcastically, once I was through.

Sometimes food triggered me, especially breakfast food. Finally, I stopped them from bringing the tray at all. One morning I stared balefully at a plateful of eggs that seemed hopelessly gooey

and toast that looked like plasterboard, and I exploded.

“What is this shit?” I said. “LaTrice, would you eat this? Look at this. You/eed this to people? Can someone please get me something to eat? ” “Lance, you can have whatever you want,”

LaTrice said serenely. LaTrice gave as good as she got. She would tease me back, even when I was too ill to laugh.

“Is it me, Lance?” LaTrice would ask with exaggerated sympathy. “Am I what’s making you sick?”

I would just grin, soundlessly, and retch again. We were becoming friends, comrades in chemo. Between cycles I went home to Austin for two-week rest periods to regain my strength, and

LaTrice always called to check up on me and make sure I was drinking my fluids. The chemo could damage my urinary tract, so she was always after me to hydrate. One night she called

when I was fooling around in my carport with a present from Oakley. It was a small remote-control car made out of titanium that could do up to 70 miles per hour.

“What’s that loud buzzing noise?” she said. “I’m in my garage,” I said. “What are you doing?” she said. “I’m playing with my toy car,” I said. “Of course you are,” she said.