August 30, 2010

Lance Armstrong-IT'S NOT ABOUT THE BIKE(3)

THAT AFTERNOON, I WALKED INTO YET ANOTHER NON-descript brown brick
medical building for my first chemotherapy treatment. I was taken aback by how informal it
was: a simple waiting room with some recliners and La-Z-Boys and assorted chairs, a coffee
table, and a TV. It looked like somebody's living room full of guests. It might have been a party,
except for the giveaway–everybody was attached to his or her very own IV drip.
Dr. Youman explained that the standard treatment protocol for tes-ticular cancer was called
BEP, a cocktail of three different drugs, bleomycin, etoposide, and cisplatin, and they were so
toxic that the nurses wore radioactive protection when handling them. The most important
ingredient of the three was cisplatin, which is actually platinum, and its use against testicular
cancer had been pioneered by a man named Dr. Lawrence Einhorn, who practiced at the Indiana
University medical center in Indianapolis. Prior to Einhorn s discovery, testicular cancer was
almost always fatal–25 years earlier it had killed a Chicago Bears football star named Brian
Piccolo, among many others. But the first man who Einhorn had treated with platinum, an
Indianapolis schoolteacher, was still alive.

Had I lived 20 years ago, I would have been dead in six months, Youman explained. Most
people think Piccolo died of lung cancer, but it started as testicular cancer, and they couldn't
save him. He died in 1970 at the age of 26. Since then, cisplatin has become the magic bullet for
testicular cancer, and Einhorn's first patient, the Indianapolis teacher, has been cancer-free for
over two decades–on his anniversaries they have a big party at his house, and Dr. Einhorn and
all his former nurses come to visit him.
I thought, Bring it on,give me platinum. But Youman warned that the treatment could make me
feel very sick. The three different anticancer toxins would be leaked into my system for five
hours at a time, over five straight days. They would have a cumulative effect. Anti-emetics
would be given to me along with the toxins, to prevent me from suffering severe nausea, but
they couldn't curb it entirely.
Chemo is so potent that you can't take it every day. Instead it's administered in three-week
cycles; I would take the treatment for one week, and then have two weeks off to allow my body
to recover and produce new red blood cells.
Dr. Youman explained everything carefully, preparing us for what we were about to face. When
he finished, I had just one question. It was a question I would ask repeatedly over the next
several weeks. "What's the cure rate for this?" I asked. "What are my chances?"
Dr. Youman said, "Sixty to sixty-five percent."
My first chemo treatment was strangely undramatic. For one thing, I didn't feel sick. I walked in
and chose a chair in the corner, the last one along a wall in a row of six or seven people. My
mother kissed me and went off to do some errands, and left me with my fellow patients. I took
my place among them.
She had prepared me to be disturbed by my first encounter with other cancer patients, but I
wasn't. Instead, I felt a sense of belonging. I was relieved to be able to talk to other people who
shared the illness, and compare experiences. By the time my mother got back, I was chatting
cheerfully with the guy next to me. He was about my grandfather's age, but we hit it off, and we
were jabbering away when my mother walked in. "Hey, Mom," I said brightly. "This is Paul, and
he's got prostate cancer."
I HAD TO KEEP MOVING, I TOLD MYSELF. EVERY MORNing
during that first week of chemo I rose early, put on a pair of sweats and my headphones, and
walked. I would stride up the road for an hour or more, breathing and working up a sweat.
Every evening, I rode my bike.
Bart Knaggs returned from Orlando with a Mickey Mouse hat he had picked up at Disney
World. He handed it to me and told me he knew I would need something to wear when I lost
my hair.
We would go riding together, and Kevin Livingston often joined us. Bart made huge maps for
us, as large as six feet in diameter. He would get maps of counties from the Department of
Highways and cut and paste them together, and we would stand over them choosing new routes
for ourselves, long winding rides out in the middle of nowhere. The deal was to always find a
new road, someplace we hadn't been before, instead of the same old out-and-back. I couldn't
stand to ride the same road twice. The training can be so monotonous that you need newness,
even if half the time you end up on a bad piece of road, or get lost. It's okay to get lost
sometimes.
Why did I ride when I had cancer? Cycling is so hard, the suffering is so intense, that it's
absolutely cleansing. You can go out there with the weight of the world on your shoulders, and
after a six-hour ride at a high pain threshold, you feel at peace. The pain is so deep and strong
that a curtain descends over your brain. At least for a while you have a kind of hall pass, and
don't have to brood on your problems; you can shut everything else out, because the effort and
subsequent fatigue are absolute.
There is an unthinking simplicity in something so hard, which is why there's probably some truth
to the idea that all world-class athletes are actually running away from something. Once,
someone asked me what pleasure I took in riding for so long. "Pleasure?" I said. "I don't
understand the question." I didn't do it for pleasure. I did it for pain.
Before the cancer, I had never examined the psychology of jumping on a bicycle and riding for
six hours. The reasons weren't especially tangible to me; a lot of what we do doesn't make sense
to us while we're doing it. I didn't want to dissect it, because that might let the genie out of the
bottle.
But now I knew exactly why I was riding: if I could continue to pedal a bike, somehow I
wouldn't be so sick.
The physical pain of cancer didn't bother me so much, because I was used to it. In fact, if I didn't
suffer, I'd feel cheated. The more I thought about it, the more cancer began to seem like a race
to me. Only the destination had changed. They shared grueling physical aspects, as well as a
dependence on time, and progress reports every interval, with checkpoints and a slavish reliance
on numbers and blood tests. The only difference was that I had to focus better and harder than I
ever did on the bike. With this illness, I couldn't afford impatience or a lapse in concentration; I
had to think about living, just making it through, every single moment. The idea was oddly
restorative: winning my life back would be the biggest victory.
I was so focused on getting better that during that first round of chemotherapy, I didn't feel
anything. Nothing. I even said to Dr. Youman, "Maybe you need to give me more." I didn't
realize that I was extremely lucky in how my body tolerated the chemo. Before it was over I
would meet other patients who had uncontrollable vomiting after the first cycle, and by the end
of my own treatments I would experience a nausea that no drug could get a grip on.
The only thing that suffered at first was my appetite. When you undergo chemotherapy, things
taste different because of the chemicals in your body. My mother would fix me a plate of food,
and she'd say, "Son, if you're not hungry and you don't want to eat this, it won't hurt my
feelings." But I tried to eat. When I woke up from a nap, she would put a plate of sliced fruit
and a large bottle of water in front of me. I needed to eat so I could keep moving.
Move, I told myself. I would get up, throw on my warmup clothes, put my Walkman on, and
walk. I don't even know how far. I'd walk up the steep hill and out of the front gates, and trudge
on up the road.
As long as I could move, I was healthy.
Within days, the Porsche was gone. I did it for two reasons, first and foremost because I thought
I might need every dime for my treatment, and I'd have to live on what was left for the rest of
my life. But I think, too, that I was beginning to need to simplify things.
A COUPLE OF DAYS AFTER I STARTED CHEMO,WE OPENED
a notification letter from the hospital: Our records show that you have no health insurance.
I stared at the letter, uncomprehending. That wasn't possible. I had a health plan with Motorola,
and I should have been fully covered. Irritated, I picked up the phone and called Bill Stapleton
to read him the letter. Bill calmed me down, and told me he would check into i t .
A few hours later, Bill called back. It was a lousy piece of timing, he said. I was in the midst of
changing employers, and although my contract with Cofidis had taken effect, the cancer was a
preexisting medical condition, for which I was not covered by the Cofidis group plan. My
insurance with Motorola had expired. I would have to pay for hospitalizations and the
treatments myself, unless Bill could figure something out.
I had cancer, and I had no health insurance.
A lot of terrible realizations hit me one after another in those first few days, and this was only a
material matter. Still, it was potentially ruinous. I looked around my house, and started thinking
about what to sell. I was wiped out financially, I assumed. I had just gone from making $2
million a year, to nothing. I had some disability insurance, but that was about it. I would have no
income, because the companies that sponsored me or paid me would cut me off, surely, since I
couldn't race. The Porsche that I so treasured now seemed like an item of pure decadent
self-indulgence. I would need every penny to pay the medical bills. I started planning the fire
sale. I'd get rid of the Porsche, and some art, and a few other toys.
I BECAME A STUDENT OF CANCER. I WENT TO THE
biggest bookstore in Austin and bought everything there on the subject. I came home with ten
different volumes: diet books, books on coping emotionally, meditation guides. I was willing to
consider any option, no matter how goofy. I read about flaxseed oil, which was supposed to be
"a true aid" against arthritis, heart infarction, cancer, and other diseases. I read about soy
powder, a "proven anti-cancer fighter." I read Yoga Journal, and became deeply if only
momentarily interested in something called The Raj, "an invitation to perfect health." I tore out
pages of Discover magazine, and collected newspaper stories on far-off clinics and far-fetched
cures. I perused a pamphlet about the Clinic of the Americas in the Dominican Republic,
describing "an absolutely certain cure for cancer."
I devoured what Bart had given me, and every time he called, I said, "What else you got?" I had
never been a devoted reader, but now I became voracious. Bart went to Amazon.com and
cleaned them out on the subject. "Look, do you want me to feed you what I find?" he asked.
"Yeah, I want everything. Everything, everything." Here I was, a high-school graduate who'd
received an eclectic education in Europe, and now I was reading medical journals. I had always
liked to study financial magazines and architectural-design magazines, but I didn't care much for
books; I had an impossibly short attention span and I couldn't sit still for that long. Now all of a
sudden I had to tackle blood counts and basic oncology. It was a second
education, and there were days that I thought, Well, I might as well go back to school and try to
become a doctor, because I'm becoming so well-versed in this.
I sat on the sofa flipping through books, talking on the phone, reading off numbers. I wanted to
know exactly what my odds were, so I could figure out how to beat them. The more research I
did, the better I felt my chances were–even though what I was reading suggested that they
weren't very good. But knowledge was more reassuring than ignorance: at least I knew what I
was dealing with, or thought I did anyway.
There was an odd commonality in the language of cancer and the language of cycling. They
were both about blood. In cycling, one way of cheating is to take a drug that boosts your red
bloodcell count. In fighting cancer, if my hemoglobin fell below a certain level, the doctors
would give me the very same drug, Epogen. There was a baseline of numbers I had to meet in
my blood tests, and the doctors measured my blood for the very same thing they measured in
cycling: my threshold for physiological stress.
I mastered a whole new language, terms like ifosfamide (a chemotherapy drug), seminoma (a
kind of tumor), and lactate dehy-drogenase (LDH, another blood marker). I began to throw
around phrases like "treatment protocol." I wanted to know it all. I wanted second, third, and
fourth opinions.
I began to receive mountains of mail, get-well cards, best wishes, and off-the-wall suggestions
for cures, and I read them all. Reading the mail was a way to keep from brooding, so in the
evenings Lisa and my mother and I would sort through the letters, and answer as many as
possible.
One evening, I opened a letter with an embossed letterhead from Vanderbilt University's
medical center. The writer was a man named Dr. Steven Wolff, the head of the bone-marrow
transplant department. In the letter, Dr. Wolff explained that he was a professor of medicine and
an oncologist, as well as an ardent cycling fan, and he wanted to help in any way he could. He
urged me to explore all the various treatment options, and offered to be available for any advice
or support. Two things about the letter drew my attention; the first was Wolff's obvious cycling
knowledge, and the other was a paragraph that urged me in strong terms to get a second opinion
from Dr. Larry Einhorn himself at Indiana University because he was the foremost expert on the
disease. Wolff added, "You should note that there are equally effective chemotherapy treatments
that could minimize possible side effects to not compromise your racing capabilities."
I picked up the phone and dialed Wolff. "Hi, this is Lance Armstrong," I said. Wolff was taken
aback, but he recovered quickly, and after we exchanged a few pleasantries, he began a hesitant
inquiry about my treatment. Wolff explained that he was reluctant to encroach on the authority
of my doctors in Austin, but he wanted to help. I told him that I was on the standard treatment
protocol for testicular cancer with lung metastasis, BEP.
"My prognosis isn't good," I said.
From that moment on, my treatment became a medical collaboration. Previously, I thought of
medicine as something practiced by individual doctors on individual patients. The doctor was
all-knowing and all-powerful, the patient was helpless. But it was beginning to dawn on me that
there was nothing wrong with seeking a cure from a combination of people and sources, and
that the patient was as important as the doctor. Dr. Reeves was my urologist, Dr. Youman my
oncologist, and now Dr. Wolff became my friend and treatment advocate, a third medical eye
and someone to whom I could turn to ask questions. Each doctor involved played a crucial role.
No one person could take sole responsibility for the state of my health, and most important, I
began to share the responsibility with them.
"What's your HCG level?" Wolff asked me.
HCG is the endocrine protein that stimulates women's ovaries, I had learned, and it was a telling
blood marker because it should not be present in healthy males. I shuffled through the papers,
looking at the various figures. "It says a hundred and nine," I said.
"Well, that's high," Wolff said. "But not extraordinary."
As I stared at the page, I saw another notation after the number.
"Uh, what's this 'K' mean?" I asked.
He was silent for a moment, and so was I .
"It means it's a hundred and nine thousand," Wolff said.
If a count of 109 was high, then what was 109,000? Wolff began to ask me about my other
marker levels, AFB and LDH. I shot questions back at him. "What does this mean?" I asked
bluntly.
Wolff explained that there was too much HCG in my body, even with the lung tumors. Where
was it coming from? He gently suggested that perhaps I should explore other therapies, more
aggressive treatment. Then he let me have it: the HCG level automatically put me in the worst
prognosis category.
Something else bothered Wolff. Bleomycin was extremely toxic on the liver and lungs, he
explained. In his view, treatment was very personal; what might be right for one patient wasn't
necessarily right for another, and for my case, bleomycin might be the wrong choice. A cyclist
needs his lung capacity the way he needs his legs, and prolonged exposure to bleomycin would
almost certainly end my career. There were other drugs, Wolffe suggested. I had choices.
"There are some guys who are the world's best at treating this," Wolff said. He told me he was a
friend of Einhorn and the other oncologists at the Indiana University medical center in
Indianapolis. He also recommended two other cancer centers–one in Houston and one in New
York. Moreover, he offered to arrange consultations for me. Immensely relieved, I accepted.
Once again, my mother leaped into action. By the next morning, she had gathered all of my
medical records and faxed them to Houston and Indianapolis for the consults. I was out riding
my bike at about 10 A.M. when a reply came from the Houston facility. Two doctors were on a
conference call, both oncologists. My mother listened to two disembodied voices as they
discussed my case with her.
"We've reviewed the information," one said. "Why haven't you had an MRI done on the
brain?"
"Well, why would we need that?" my mother asked.
"His numbers are so high that we believe he has it in his brain, too," he said.
"You gotta be kidding me," my mother said.
"Normally when we see numbers like that, it's because it's in the brain. We feel he needs more
aggressive treatment."
Stunned, my mother said, "But he just started chemotherapy."
"Look," one of them said. "We don't think your son is going to make it at this rate."
"Don't do this, okay?" she said. "I have fought for this child my entire life."
"We feel you should come down here immediately, and start treatments with us."
"Lance will be back in a little while," my mother said, shakily. "I'll talk to him, and we'll call you
back."
A few minutes later, I walked in the door, and my mother said, "Son, I've got to talk to you." I
could see that she was a wreck, and I had that familiar sinking sensation in my stomach. As my
mother tremulously summarized what the doctors had said, I didn't respond, I just sat there
silently–it seemed like the more serious matters grew, the quieter I became. After a minute, I
calmly told her that I wanted to talk to the doctors myself, and hear what they had to say.
I called them back, and I listened as they reiterated what they had already told my mother.
Wearily, I told them that I wanted to go to Houston and see them as soon as possible. After I
got off the phone, I paged Dr. Youman. I gave him a brief encapsulation of my conversation
with the Houston doctors. "Dr. Youman, they think I have it in my brain. They say I should
have a brain MRI."
"Well, I was going to have you in for one tomorrow," Youman said. "You're actually already
scheduled for noon."
Dr. Youman told me that he had scheduled the MRI because he had been thinking along the
same lines, that it had probably moved into my brain.
I called Steve Wolff, and told him about the conversation. I said that I intended to go to
Houston the next day. Steve agreed that I should go, but he again recommended that I also talk
to the people at Indiana University, because it was the epicenter for dealing with testicular
cancer. Everyone took their treatments from the protocols established by Einhorn, so why didn't
I go straight to the source? Steve told me that Einhorn was traveling in Australia, but he offered
to refer me to Einhorn's chief associate, Dr. Craig Nichols. I agreed, and he called Nichols to ask
for a consultation on my behalf.
The next morning, I reported to the hospital for the MRI. For moral support, Lisa, my mother,
and Bill Stapleton all came with me, and my grandmother flew in from Dallas as well. As soon
as I saw Dr. Youman, I said fatalistically, "I fully expect that I have it in my brain. I already
know that's what you're going to tell me."
A brain MRI is a claustrophobic procedure in which you are passed through a tunnel so tight
that it practically touches your nose and forehead and makes you feel that you might suffocate. I
hated i t .
The results of the scan came back almost immediately. My mother and grandmother and Bill
waited in the lobby, but I wanted Lisa with me in Dr. Youman s office. I gripped her hand. Dr.
Youman took one look at the image and said, reluctantly, "You have two spots on your brain."
Lisa covered her eyes. I was braced for it, but she wasn't. Neither was my mother, who sat in
the lobby waiting for me. I walked outside, and I simply said, "We need to go to Houston." That
was all I had to say; she knew the rest.
Dr. Youman said, "Okay, why don't you go to talk to the Houston people. That's a very good
idea." I already knew he was an excellent doctor, but now I appreciated his lack of ego. He
would remain my local oncologist, and I would see him for countless more blood tests and
checkups, but thanks to his generous spirit and willingness to collaborate with others in my
treatment, he also became my friend.
Lisa and my mother could not keep from crying; they sat in the lobby with tears running from
their eyes. But I was oddly unemotional. It had been a busy week, I thought to myself. I was
diagnosed on a Wednesday, had surgery Thursday, was released Friday night, banked sperm on
Saturday, had a press conference announcing to the world that I had testicular cancer on
Monday morning, started chemo on Monday afternoon. Now it was Thursday, and it was in my
brain. This opponent was turning out to be much tougher than I'd thought. I couldn't seem to
get any good news: It's in your lungs, it's stage three, you have no insurance, now it's in your
brain.
We drove home, and my mother composed herself and sat at the fax machine feeding more
papers into it for the doctors in Houston. Lisa sat in the living room, seeming lost. I called Bart,
and told him about my plans. Bart asked if I wanted company on the trip, and I said yes. We
would leave at 6 A.M. the next day.
But believe it or not, there was a certain relief in hearing the worst news yet–because I felt like
that was the end of it all. No doctor could tell me anything more; now I knew every terrible
thing in the world.
Each time I was more fully diagnosed, I asked my doctors hard questions. What are my
chances? I wanted to know the numbers. My percentage was shrinking daily. Dr. Reeves told
me 50 percent, "but really I was thinking twenty," he admitted to me later. If he was perfectly
honest, he would have told me that he nearly wept when he examined me, because he thought
he was looking at a terminally ill 25-year-old, and he couldn't help but think of his own son,
who was my age. If Bart Knaggs had been totally candid, he would have told me that when his
prospective father-in-law, who was a doctor, had heard that the cancer had moved into my
lungs, he said to Bart, "Well, your friend is dead."
What are my chances? It was a question I would repeat over and over. But it was irrelevant,
wasn't it? It didn't matter, because the medical odds don't take into account the unfathomable.
There is no proper way to estimate somebody's chances, and we shouldn't try, because we can
never be entirely right, and it deprives people of hope. Hope that is the only antidote to fear.
Those questions, Why me? What are my chances? were unknowable, and I would even come to
feel that they were too self-absorbed. For most of my life I had operated under a simple
schematic of winning and losing, but cancer was teaching me a tolerance for ambiguities. I was
coming to understand that the disease doesn't discriminate or listen to the odds–it will decimate
a strong person with a wonderful attitude, while it somehow miraculously spares the weaker
person who is resigned to failure. I had always assumed that if I won bike races, it made me a
stronger and more worthy person. Not so.
Why me? Why anybody? I was no more or less valuable than the man sitting next to me in the
chemo center. It was not a question of worthiness.
What is stronger, fear or hope? It's an interesting question, and perhaps even an important one.
Initially, I was very fearful and without
much hope, but as I sat there and absorbed the full extent of my illness, I refused to let the fear
completely blot out my optimism. Something told me that fear should never fully rule the heart,
and I decided not to be afraid.
I wanted to live, but whether I would or not was a mystery, and in the midst of confronting that
fact, even at that moment, I was beginning to sense that to stare into the heart of such a fearful
mystery wasn't a bad thing. To be afraid is a priceless education. Once you have been that
scared, you know more about your frailty than most people, and I think that changes a man. I
was brought low, and there was nothing to take refuge in but the philosophical: this disease
would force me to ask more of myself as person than I ever had before, and to seek out a
different ethic.
A couple of days earlier, I had received an e-mail from a military guy stationed in Asia. He was a
fellow cancer patient, and he wanted to tell me something. "You don't know it yet," he wrote,
"but we're the lucky ones."
I'd said aloud, "This guy's a nut."
What on earth could he mean?
five
CONVERSATIONS WITH CANCER
THERE WAS A DISQUIETING INTIMACY TO THE
idea that something uninvited was living in my head. When something climbs straight into your
mind, that's way personal. I decided to get personal right back, and I began to talk to it,
engaging in an inner conversation with cancer. I tried to be firm in my discussions. "You picked
the wrong guy," I told it. "When you looked around for a body to try to live in, you made a big
mistake when you chose mine."
But even as I said the words, I knew they were just competitive braggadocio. The face that
looked back at me from the mirror that morning was pale and bleary-eyed, and my mouth was
stretched into a thin hard line. In the sound of my own inner voice I heard an unfamiliar note:
uncertainty.
I tried negotiating with it. If the deal is that I never cycle again, but I I'll get to live, I'll take it, I
thought. Show me the dotted line, and I'll sign. I'll do something else, I'll go back to school, I'll
be a trash man, do anything. Just let me live.
We left before sunrise for the drive to Houston. My mother was at the wheel of her Volvo and I
rode with Lisa in the backseat, which was unlike me. I never turned the driving over to anyone
else–that right there tells you how preoccupied I was. We were virtually wordless for the
three-hour trip, exhausted and lost in our own thoughts; none of us had been able to sleep well
the previous night. My mother pushed the accelerator, as if she just wanted to get it over with.
She was so distracted, she almost hit a dog.
Houston is a gigantic metroplex of a city, with traffic jams choking the freeways. Just driving
through it was nerve-racking. We finally found the hospital at 9 A.M., and filed into the lobby
waiting area, and that's exactly what we did–waited, for the next two hours. We were too early.
Sitting in the lobby, I felt like we were in another traffic jam.
It was a sprawling university hospital and teaching facility, with huge, echoing hallways teeming
with people–sick people, crying babies, worried family members, brusque hospital
administrators, harried nurses, doctors, interns. The fluorescent tubes in the ceiling shed a white,
leaky sodium light so typical of hospitals, an unrelenting flat beam that makes even the healthy
people look pale and tense. It seemed like we waited forever, and as I sat there, I grew
increasingly agitated. I flipped through magazines and drummed a pencil on the arm of the chair,
and made calls on my cell phone.
Finally, the doctor I had spoken to appeared and we met face-to-face: he was the picture of a
smart young oncologist, a well-groomed man with clipped manners and the lean physique of a
runner beneath his lab coat.
"I've been following you," he said. "I'm glad you're here."
But once the pleasantries were over, he had a bedside manner that was terse and cold. As soon
as we sat down, he began to outline a treatment protocol. He would continue treating me with
bleomycin, he said, but his regimen would be much more caustic than what Youman had
prescribed.
"You will crawl out of here," he said.
My eyes widened, and so did my mother's. I was taken aback. He continued. "I'm going to kill
you," he said. "Every day, I'm going to kill you, and then I'm going to bring you back to life.
We're going to hit you with chemo, and then hit you again, and hit you again. You're not going
to be able to walk." He said it point-blank. "We're practically going to have to teach you how to
walk again, after we're done."
Because the treatment would leave me infertile, I would probably never have kids. Because the
bleomycin would tear up my lungs, I would never be able to race a bike again. I would suffer
immense pain. The more he talked, the more I recoiled at the vivid images of my en-feeblement.
I asked him why the treatment had to be so harsh. "You're worst-case," he said. "But I feel this
is your only shot, at this hospital."
By the time he finished, my mother was trembling, and Lisa looked shell-shocked. Bart was
angry. He interrupted and tried to ask a couple of questions about alternative treatments. Bart is
a real questioner and note-taker, a very thorough man, and he was worried and protective. The
doctor cut him off.
"Look, your chances aren't great," he said to me. "But they're a lot better if you come here than
they are if you go anywhere else."
I asked him what his thoughts were about Dr. Einhorn's protocol in Indianapolis. He was
dismissive. "You can go to Indiana, but chances are you'll be back here. Their therapy won't
work for an advanced case like yours."
Finally, he concluded his presentation. He wanted me to start chemotherapy with him
immediately. "This is the only place to get this sort of treatment, and if you don't do it, I can't
promise you what will happen," he said.
I told him I wanted to think about what he had said over lunch, and I would come back in the
afternoon with an answer.
We drove around Houston in a daze. Finally we found a sandwich shop, but none of us felt
much like eating after hearing such a dire summation of my case. I felt pressure to make a quick
decision: it was Friday, and he wanted me to begin treatment Monday.
I was discouraged. I could accept the idea that I was perilously sick, but the idea of being
reduced to feebleness was the most depressing thought of all. Listlessly, I went over the pros
and cons of what he had said, and asked for feedback from my mother and Lisa and Bart. How
do you discuss such a matter? I tried to put a positive spin on the consultation, and set forth the
opinion that maybe this doctor's competitiveness and self-confidence were good. But I could see
that my mother had plainly been terrified by him.
The protocol sounded so much more severe than what I would receive anywhere else. I won't
walk, I won't have children, I won't ride, I thought. Ordinarily, I was the sort who went in for
overkill: aggressive training, aggressive racing. But for once I thought, Maybe this is too much.
Maybe this is more than I need.
I decided to call Dr. Wolff to ask his opinion. The more I talked to him, the better I liked him;
he was all gray matter and good sense, with no ego. I outlined the proposed protocol and the
repercussions. "He wants me to start treatment right away, and he's expecting an answer this
afternoon."
Wolff was quiet on his end of the phone. I could hear him thinking. "It wouldn't hurt you to get
one more opinion," he said finally. Wolff didn't think I needed to make a decision that day, and
he suggested that I at least visit the Indiana medical center. The more thought about it, the more
it seemed like a good recommendation. Why not go to Indianapolis and see the people who
wrote the book on testicular cancer, the protocol that all the other doctors used?
On the car phone, I called Dr. Craig Nichols, Einhorn's associate. I explained that my situation
was grave and that I wanted additional opinions and was in a hurry to get them. "Can I come
see you now?" I asked.
Nichols replied that he had been expecting my call. "We can see you right away," he said. Could
I get there in time to meet early the next morning? It was a Saturday. I learned later that it
wasn't completely a case of special treatment; the IU staff does not turn away cases, no matter
how bad, and they do phone consultations with patients and other doctors around the world
daily.
By now it was three o'clock, and I was apprehensive about going back to the Houston facility to
retrieve my medical records. The doctor there was obviously eager to treat me, but he had
frightened me, too. When I told him I wanted to wait a day or two to make my decision, he was
pleasant, and wished me luck. "Just don't wait too long," he said.
The decision to go to Indianapolis lifted my mother's spirits somewhat, and she took charge. She
got on her cell phone to Bill Staple-ton's office, and reached his assistant, Stacy Pounds. "Stacy,
we need to be on a plane to Indianapolis," she said. Then we piled in the car and raced to the
Houston airport. We dumped my mother's Volvo in the long-term parking lot. None of us had
any clothes or toothbrushes because we thought we were going to Houston for a day trip. When
we got to the ticket counter, we discovered that Stacy had not only managed to get us four
seats, but had gotten us upgrades as well.
When we landed in Indianapolis my mother took charge again, and rented us a car. It was cold
in Indianapolis, but she discovered that there was a hotel adjoining the hospital with a covered
walkway. She checked us in there, and we collapsed in our rooms. It would be another short
night, because we were scheduled to meet with Dr. Nichols early the next morning.
I ROSE IN ANOTHER PREDAWN, AND STOOD COMBING
my hair in the mirror. I had already cut it close to my head, in anticipation of the effects of
chemo. Now a big thatch of it came away in the comb. I put on a cap.
I went down to the lobby. The hotel had a continental breakfast buffet with cereal and fruit in
the dining room, and my mother was already there. As I joined her at the table, I took off the
cap.
"My hair's falling out," I announced.
My mother tried to smile. "Well, we knew that it would."
I tucked my X rays and other records under my arm, and we walked across the street to the
hospital in the chilly darkness.
The IU medical center is a standard teaching hospital housed in a large institutional-looking
building. We took the elevator to the oncology offices, where we were ushered into a
conference room with a large plate-glass window.
As we walked in, the sun was just beginning to come up, and the room was suffused with color.
For much of the next hour the sun continued to rise steadily through the window, shimmering,
which may have contributed to the sense of well-being I experienced.
We met the doctors who would consult with me. Craig Nichols was a distinguished-looking
man with a cropped beard and an understated air. He carried a cup of coffee in a Styrofoam cup.
I wasn't drinking coffee, and I missed it badly. I had given it up because the nutrition books said
to; if no caffeine could help save my life, then I didn't intend to drink a drop. But I stared at
Nichols's cup, feeling pangs of withdrawal.
"Where do you stand on coffee?" I asked.
"Well, it's probably not the best thing for you," he said, "but a cup here and a cup there probably
won't kill you."
Accompanying Nichols was Scott Shapiro, a neurosurgeon. Shapiro was a tall and
stoop-shouldered man who looked exactly like the actor Abe Vigoda, with deep-set eyes and
bushy eyebrows. Dr. Nichols summed up my case to Shapiro: I was diagnosed with testicular
cancer and it had metastasized. "The workup found mets in his chest, and two brain mets,"
Nichols said to Shapiro.
We sat down, and as we began to talk the sun glowed through the glass. The hospital was very
quiet, and Nichols had a calm, plain-spoken manner that contributed to the sense of
peacefulness I felt. As he talked, I studied him. He was very relaxed, with a habit of leaning
against walls, tilting back in chairs with his hands behind his head, and clearing his throat. But
there was clearly a tremendous confidence beneath his mildness. He began to grow on me.
"We, unh," he said, clearing his throat, "feel good about your, unh, chances."
I told Nichols we had just come from Houston. I expected him to be as dismissive as his
counterpart had been, but instead, he was gracious. He said, "It's a fine facility and we
appreciate the work they do." He then took my medical records and began to review them. He
stuck my X rays up on the light board, and I stared over his shoulder at them as he pointed out
the areas of abnormality in my chest, counting 12 tumors in all–"multiple nodules on both sides,"
as he put it. Some of them were specks, and some measured as large as 2.7 centimeters. Then he
turned to my brain scan and showed me the two areas of abnormality right under the skull. They
were grape-sized white spots.
I was very attentive–there is something about staring at your brain metastases that focuses a
person. Nichols made suggestions, almost casually, about my prognosis and how he would fight
the disease. His presentation was simple and straightforward.
"You're in an advanced stage, and the brain lesions complicate things," he said. He explained
that typically brain lesions aren't treated with chemo because of the blood-brain barrier, a kind of
physiological moat that guards the brain, blocking the entry of drugs like those used in
chemotherapy. The options were radiation and/or surgery. Nichols favored surgery.
As usual, I wanted hard, precise information. Wliat are my chances?
"Well, you got a poor start," Nichols said, meaning I had been diagnosed late. "The percentages
are unfavorable. But this is potentially curable. I think you have almost a coin-flip of a
chance."
Nichols was sober and realistic, but he exuded optimism, too. In testicular cancer, there is
almost always a chance of cure now, thanks to the use of platinum, and he had seen people with
more advanced disease than I had who survived. "We see all the very hard cases here," he said.
"Even though you're in the poor-prognosis category, we've cured a lot worse."
Then Nichols stunned me: he said that he would like to tailor my treatment to get me back on
the bike. That was the one thing no doctor besides Steve Wolff had said to me. Not one. I was
so taken aback that at first I didn't trust what he was saying. The trip to Houston had so
deflated me, particularly the description of the rigors of treatment and the extreme measures it
would take to save me. My highest priority was survival. "Just help me live," I said.
But Nichols was not only confident that I could live, he seemed to feel there was a chance I
could race again. He wouldn't compromise my chances of living, but he wanted to alter my
protocol to preserve my lungs. There was another protocol of platinum-based chemo called VIP
(vinblastine, etoposide, ifosfamide, cisplatin), which was a much more caustic regimen in the
short term, but which in the long term would not be as debilitating to my lungs as bleomycin.
With ifosfamide, he said, I would have more nausea and vomiting and short-term discomfort. If I
could withstand three cycles of VIP, in addition to the BEP cycle I had already undergone, I just
might get rid of the cancer and be able to recover enough physically to compete.
"You mean we can do that instead of what everyone else is doing?" my mother asked. "No
bleomycin?"
"We don't want his lungs to be affected," Nichols said.
Nichols continued: he favored surgery to remove the brain tumors. The standard treatment for
brain tumors was radiation, but radiation can have long-term side effects on the central nervous
system; some patients who undergo it have intellection deterioration and cognitive and
coordination disturbance. "They're not quite the same after radiation," he said. In my case one
potential effect could be a slight loss of balance. Nothing serious to the ordinary person, but
enough to keep me from riding a bike down an Alp–balance is something you need in that
situation.
Shapiro took over the discussion. I studied him: in addition to his resemblance to the sad-eyed
Vigoda, there was the matter of what he was wearing: an Adidas sweatsuit with the signature
stripes down the side and zippers at the bottom, over which he wore the more traditional lab
coat. His hair curled over his collar. This guy is a brain surgeon? I -wondered. He seemed
entirely too casual to be a doctor at all.
"Let's look at the MRIs and the CT scans," Shapiro said easily.
Nichols handed them over. Shapiro popped the images up on the X ray board, and as he
regarded them, he began to slowly nod.
"Mmmm, yep," he said. "I can handle this. No problem."
"No problem?" I said.
Shapiro pointed to the lesions and said that they appeared to be on the surface of my brain, and
should therefore be relatively easy to get at, using something called frameless stereotactics, a
technology that allowed him to pinpoint precisely where the cancer was and consequently make
a relatively small incision.
"It allows us to isolate the lesions before we operate, so that our time in the cranial area is a
fourth of what it would have been before," he said.
"What are the risks?" I asked.
"With a young person, the problems of anesthesia are minimal. There's not much risk of
infection or hemorrhage, either, and only a small risk of seizure. The main risk is that you might
come out of it with some weakness on one side of the body. It's a simple procedure, and you
seem like a pretty strong character. It should be a walk in the park."
I was tired, and in a state of disbelief. It made me blunt. "You'll have to convince me you know
what you're doing," I said.
"Look, I've done a large number of these," Shapiro said. "I've never had anyone die, and I've
never made anyone worse."
"Yeah, but why should you be the person who operates on my head?"
"Because as good as you are at cycling"–he paused–"I'm a lot better at brain surgery."
I laughed, and knew that I liked him. By then it was late morning, and I rose from my chair and
told them that we would think about what they had said over lunch, and that I would make a
decision later that day.
First, I wanted to have another talk with my friends and my mother. These were stressful
decisions. I had to choose my doctors and my place of treatment, and it wasn't like choosing a
mutual fund, either. If I invested in a mutual fund, I'd ask, What's my rate of return over five
years? But this was entirely different. The rate of return in this instance was a matter of life and
death.
We went across the street to a mall, and found a brew pub. Everyone was quiet at lunch. Too
quiet. My mother, Lisa, and Bart were afraid of influencing me; they all thought I should make
my own decision about where to be treated. I asked them for comments, but couldn't seem to
draw them into i t .
I kept trying. "Well, you know, they say in Houston there's a good chance I'll be cured, but here
they want to change my protocol, and maybe that's good." Nobody replied, or gave the slightest
hint of an opinion. They were totally noncommittal. They wanted a decision, but it had to be
mine, not theirs.
While I ate, I thought it over. I wanted to be sure I had done a good job of evaluating the
doctors and understanding their treatment plans. I was at ground zero, I had conceded my
career, but Dr. Nichols and Dr. Shapiro didn't seem to think I had to make that concession yet. I
decided I had confidence in them, in their purposely laid-back styles, their lack of ego, and their
refusal to be rattled by me. They were exactly who they appeared to be: two wrinkled, tired, yet
very learned doctors, and I suspected there were none better.
I had tried to ask some tough questions, but Nichols was imperturbable, and candid. He wasn't
going to get suckered into a bidding war, or try to sell his shop over another. He was extremely
professional, and secure in his credibility.
Suddenly, I blurted, "Well, these guys really seem like they know what they're doing. And I
really like them. I like this place. And if I'm going to have to have surgery, Dr. Shapiro doesn't
seem worried at all. So I think I'm gonna come here."
Their faces lit up. "I totally agree," Bart said, finally going cut on a limb.
My mother said, "I think you're right."
We returned to the IU medical center, and I met with Dr. Nichols again. "This is where I want
to do my treatment," I said.
"Okay, good," Nichols said. "You need to be back here on Monday to take some measurements,
and Tuesday we'll operate on the brain."
Nichols said that immediately after the surgery I would start the new chemotherapy regimen
with him. He brought in the chief oncology nurse, LaTrice Haney, who would be working with
me, and we sat down to map out a treatment schedule.
"You can't kill me," I said. "Hit me with everything you got, just dump it all on me. Whatever
you give to other people, give me double. I want to make sure we get it all. Let's kill this damn
thing."
Nichols and LaTrice wanted to disabuse me of that notion right away. "Let me assure you, I can
kill you," Nichols said. "It's possible." I was under the misperception, in part because of the
conversation in Houston, that they had to bombard me to cure me, but chemo is so toxic that
too much of it would destroy my system. Nichols actually wanted to wait a week to begin
treating me, because my white blood cell count was still low from the first cycle of chemo. Only
when I was physically ready would I begin a VIP chemo cycle.
LaTrice Haney took over the conversation. She was a very correct and expert-seeming nurse,
although I would discover that she had a sneaky wit. Her fluency on the subject of
chemotherapy seemed equal to the doctors' as she guided me through every element of the
protocol, explaining not just what each one did, but why it worked, in an almost teacherly way.
I tried to take in all of the information–I was determined to stay involved in my health, in the
decision-making. My mother was still anxious, of course. "How sick will he be?" she asked.
"He will probably have episodes of nausea, he may have vomiting," LaTrice said. "But there are
new medications out, recent ones that can minimize his vomiting, if not eliminate it."
LaTrice told me that every drop of chemo that went into my body would be carefully counted,
as would everything that came out. Her
explanations were so calm and succinct that when she was through, I didn't have any questions,
and my mother seemed comforted. LaTrice had answered everything.
A WEEK LATER, WE RETURNED TO INDIANAPOLIS. MY
mother carried all my records in her bag, as well as a huge Ziploc full of my vitamins and
medicines. By now she had been living out of one small overnight case for almost three weeks,
and she didn't even have a sweater. It was cool in Indianapolis, so she borrowed a blanket off
the plane to keep warm.
At the IU medical center, we went through another laborious check-in process, with my mother
digging in her bag for my records. An administrator took down all of the pertinent information
and asked us various questions.
"What kind of food do you like?" she asked.
I said, "I can't have sugars. I can't have beef. I can't have cheese products. And I have to have
free-range chicken."
She just stared back at me, and said, "What can you eat?"
It was a teaching hospital, not a catering service, I realized. But my mother was furious. She
stood up, all 5-foot-3 of her, and said, "We're getting ready to face brain surgery tomorrow, and
don't even try this with me. We have a nutritionist who has recommended certain things. If you
can't do it, fine. We'll get our own food." From then on, whenever my mother visited the
hospital she went shopping for me.
Next, we went to our room, and my mother decided it was too noisy. It was right by the nurses'
station, and she thought it would disturb me to hear them talking outside my door, so she
insisted that they change my room, and I was moved to the end of the hall, where it was
quieter.
That afternoon, I saw Dr. Shapiro for the preliminaries to surgery.
One charming feature of frameless stereotactics entailed placing colored dots all over my skull to
mark the locations of the tumors and the places where Shapiro would make his incisions to get
to them.
Somehow, those dots made the surgery more immediate. It struck me that they put those dots
on my head so that Shapiro would know where to cut into my skull. There was no easy way to
say it; it was where the surgeon would crack my head open.
"LaTrice," I said, "the idea of cutting my head open, I just don't know if I can deal with that."
I met a wall. Much as I wanted to be positive and unafraid, all I knew was, when people get
brain tumors, they don't live. The rest I figured was curable; my other organs and appendages
weren't as important. But the brain, that was the big one. I remembered a rhyme I'd heard
somewhere, "Once you touch the brain you're never the same." The people around me were as
frightened as I was, or more so. It seemed everyone I knew had flown in to be with me: Och,
Chris Carmichael, Bill, Kevin. I wanted them around, and I knew they were glad to be there,
because it made them feel like they could do something to help. But I could see the fear in their
faces, in their widened eyes and their false cheerfulness, so I tried to rally, and to hide my own
uncertainty.
"I'm ready to crush this thing," I announced. "I'm ready for this surgery. You won't find me
sitting around trembling, scared to let them take me."
One thing you realize when you're sick is that you aren't the only person who needs
support–sometimes you have to be the one who supports others. My friends shouldn't always
have to be the ones saying: "You're going to make it." Sometimes I had to be the one who
reassured them, and said, "I'm going to make it. Don't worry."
We watched the World Series and tried to act like we were interested in the outcome–as much
as anybody really cares about baseball before brain surgery. We chatted about the stock market,
and about bicycle racing. The e-mails and cards kept pouring in, from people I didn't even know
or hadn't heard from in years, and we sat around reading them aloud.
I felt a sudden urgency to assess my financial worth. I explained the health-insurance problem to
Och and Chris, and we got paper and pencils and began totaling up my assets. "Let's see where I
am," I said. "We've got to get this wired tight. I need to have a plan, so I can feel like I'm
controlling this thing." I had enough saved up to go to college, we decided–if I sold my house. I
didn't want to sell it, but I tried to be philosophical. Hey, I got dealt a bad hand. If I needed the
money, that's what I would have to do. I added up my cash, and how much was in my
retirement account.
Lot: $220,000. Pool and landscaping: $60,000. Furniture and art: $300,000. Fixtures:
$50,000.
Later in the day, Shapiro came to my room. "We need to discuss the surgery," he said in a
serious tone.
"What are you talking about?" I said. "This is relatively minor, right?"
"Well, it's a little more serious than that."
Shapiro said that the tumors were in two tricky spots: one was over my vision field and the
other was over a center of coordination. So that explained my blurry vision. He said he would
tailor the operation to be precise, keeping the incisions as small as possible, hopefully making
them within one millimeter of the lesions. There would be no huge incisions like in the old days.
Still, I shuddered at his description of the procedure. I don't think I had fully admitted the
severity of the operation to myself; I thought it sounded easy–he would just go in and scrape off
the lesions. But now that he went into the details, it hit home that he would be operating in
areas where the slightest errors could cost me my eyesight or my movement and motor skills.
Shapiro could see that I was beginning to get truly frightened. "Look, nobody ever wants brain
surgery," he said. "If you aren't scared, you aren't normal."
Shapiro assured me that I would bounce back from the surgery quickly: I would spend just one
day in intensive care and, after another day of recovery, I would get straight down to business
with my chemotherapy.
That night, my mother, Bill, Och, Chris, and the rest of the group took me across the street to
the mall to get something to eat at a nice continental-cuisine restaurant. I couldn't eat much. I
still had the dots on my head from the frameless stereotactics, and a hospital bracelet on my
wrist, but I no longer cared how I looked. So what if I had dots on my head? I was just happy to
get out of the hospital and move around. People stared, but it didn't matter. Tomorrow, my head
would be shaved.
HOW DO YOU CONFRONT YOUR OWN DEATH? SOMEtimes
I think the blood-brain barrier is more than just physical, it's emotional, too. Maybe there's
a protective mechanism in our psyche that prevents us from accepting our mortality unless we
absolutely have t o .
The night before brain surgery, I thought about death. I searched out my larger values, and I
asked myself, if I was going to die, did I want to do it fighting and clawing or in peaceful
surrender? What sort of character did I hope to show? Was I content with myself and what I had
done with my life so far? I decided that I was essentially a good person, although I could have
been better–but at the same time I understood that the cancer didn't care.
I asked myself what I believed. I had never prayed a lot. I hoped hard, I wished hard, but I didn't
pray. I had developed a certain distrust of organized religion growing up, but I felt I had the
capacity to be a spiritual person, and to hold some fervent beliefs. Quite simply, I believed I had
a responsibility to be a good person, and that meant fair, honest, hardworking, and honorable. If
I did that, if I was good to my family, true to my friends, if I gave back to my community or to
some cause, if I wasn't a liar, a cheat, or a thief, then I believed that should be enough. At the
end of the day, if there was indeed some Body or presence standing there to judge me, I hoped I
would be judged on whether I had lived a true life, not on whether I believed in a certain book,
or whether I'd been baptized. If there was indeed a God at the end of my days, I hoped he didn't
say, "But you were never a Christian, so you're going the other way from heaven." If so, I was
going to reply, "You know what? You're right. Fine."
I believed, too, in the doctors and the medicine and the surgeries– I believed in that. I believed
in them. A person like Dr. Einhorn, that's someone to believe in, I thought, a person with the
mind to develop an experimental treatment 20 years ago that now could save my life. I believed
in the hard currency of his intelligence and his research.
Beyond that, I had no idea where to draw the line between spiritual belief and science. But I
knew this much: I believed in belief, for its own shining sake. To believe in the face of utter
hopelessness, every article of evidence to the contrary, to ignore apparent catastrophe– what
other choice was there? We do it every day, I realized. We are so much stronger than we
imagine, and belief is one of the most valiant and long-lived human characteristics. To believe,
when all along we humans know that nothing can cure the briefness of this life, that there is no
remedy for our basic mortality, that is a form of bravery.
To continue believing in yourself, believing in the doctors, believing in the treatment, believing
in whatever I chose to believe in, that was the most important thing, I decided. It had to be.
Without belief, we would be left with nothing but an overwhelming doom, every single day.
And it will beat you. I didn't fully see, until the cancer, how we fight every day against the
creeping negatives of the world, how we struggle daily against the slow lapping of cynicism.
Dispiritedness and disappointment, these were the real perils of life, not some sudden illness or
cataclysmic millennium doomsday. I knew now why people fear cancer: because it is a slow and
inevitable death, it is the very definition of cynicism and loss of spirit. So, I believed.
WHEN YOU CAN'T REMEMBER SOMETHING, THERE'S A reason why. I've blocked out
much of what I thought and felt the morning of my brain surgery, but one thing I remember
clearly is the date, October 25th, because when it was over I was so glad to be alive. My mother
and Och and Bill Stapleton came into my room at 6 A.M. to wake me up, and various nurses
came by to prepare me for the surgery. Before you undergo a brain operation, you have a
memory test. The doctors say, "We're going to tell you three simple words, and try to remember
them for as long as you can." Some brain-tumor patients have lapses and can't remember what
they were told ten minutes ago. If the tumor has affected you, it's the little things that you can't
recall.
A nurse said, "Ball, pin, driveway. At some point we will ask you to repeat these words."
It could be 30 minutes later, or it could be three hours, but I would be asked for them
eventually, and if I forgot, that would mean big trouble. I didn't want anyone to think I had a
problem–I was still trying to prove I wasn't really as sick as the medical experts thought. I was
determined to remember those words, so they were all I thought about for several minutes: Ball,
pin, driveway. Ball, pin, driveway.
A half hour later a doctor returned and asked me for the words.
"Ball, pin, driveway," I said, confidently.
It was time to go to surgery. I was wheeled down the hall, with my mother walking part of the
way, until we turned into the surgical room, where a team of masked nurses and doctors was
waiting for me. They propped me up on the operating table, as the anesthesiologist began the
job of administering the knockout punch.
For some reason, I felt chatty.
"Did you guys ever see the movie Malice?" I asked.
A nurse shook her head.
Enthusiastically, I launched into a summary of the plot: Alec Baldwin plays this gifted but
arrogant surgeon who is sued for malpractice, and at his trial, a lawyer accuses him of suffering
from something called the God Complex–believing that he is infallible.
Baldwin gives a great speech in his own defense–but then he incriminates himself. He describes
the tension and the pressure of surgery when a patient is lying on a table and he has to make
split-second decisions that determine life or death.
"At that moment, gentlemen," he declares, "I don't think I'm God. I am God."
I finished the story, doing a dead-on imitation of Alec Baldwin.
My next word was "Unnnnnhhh."
And I passed straight out from the anesthesia.
The thing about that speech is that there is an element of truth in it, absolute truth. As I passed
into unconsciousness, my doctors controlled my future. They controlled my ability to sleep, and
to reawaken. For that period of time, they were the ultimate beings. My doctors were my
Gods.
Anesthesia was like a blackout: one moment I was cognizant, and the next moment I didn't even
exist. The anesthesiologist, in testing the levels, brought me to consciousness just briefly before
the surgery began. As I woke up, I realized that the surgery was not over; in fact,
no it had not even gotten under way, and I was furious. I said, woo/ily, "Damn it, let's get
started."
I heard Shapiro's voice say, "Everything's fine," and I blacked out again.
All I know about the surgery, of course, is what Dr. Shapiro related to me later. I was on the
table for roughly six hours. He made the incision and went about the job of removing the
lesions. As soon as he scraped them away, he gave them to a pathologist, who put them right
under a microscope.
By examining the tissue immediately, they could tell what sort of cancer it was and how likely it
was to spread. If it was a lively and aggressive form of cancer, then there was a likelihood that
more of it would be found.
But the pathologist looked up from the microscope, surprised, and said, "It's necrotic tissue."
"They're dead?" Shapiro said.
"They're dead," the technician said.
It was impossible to say that every cell was dead, of course. But they had every appearance of
being lifeless and nonthreatening. It was the best possible news, because it meant they weren't
spreading. What killed them? I don't know, and neither do the doctors. Some necrotic tissue
isn't uncommon.
Shapiro went straight from the surgery to find my mother, and said, "He's in the recovery room
and doing well." He explained that the tissue was necrotic, which meant there probably wasn't
any more of it, they had gotten it all.
"It went much better than we ever expected," Shapiro said.
I WOKE UP ... SLOWLY ... IT WAS VERY BRIGHT AND and someone was speaking to
me.
I'm alive.
I opened my eyes. I was in the recovery room, and Scott Shapiro was bending over me. Once a
doctor has cracked your skull and performed brain surgery, and then put you back together
again, there is a moment of truth. No matter how good the surgeon, he waits anxiously to see if
everything moves, and whether the patient is properly responsive.
"Do you remember me?" he said.
"You're my doctor," I said.
"What's my name?"
"Scott Shapiro."
"Can you tell me your name?"
"Lance Armstrong," I said. "And I can kick your ass on a bike any day."
I began to fade back to sleep, but as my eyes closed, I saw the same doctor who had tested my
memory.
"Ball, pin, driveway," I said.
I dropped back into the black dreamless bottomless anesthetic sleep.
When I awoke again, I was in a dim, quiet room, in intensive care. I just lay there for a moment,
fighting the haze of anesthesia. It was terribly dim, and quiet. I wanted to leave. Move.
I moved in the sheets.
"He's awake," a nurse said.
I threw a leg over the bed.
"Stay down!" a nurse said. "What are you doing?"
"I'm getting up," I said.
I started to rise.
Move. If you can still move, you aren't sick.
"You can't get up yet," she said. "Lie down."
I lay back down.
"I'm hungry," I announced.
As I BECAME MORE FULLY CONSCIOUS, I REALIZED
that my head was completely wrapped in gauze and bandages. My senses seemed wrapped up,
too, probably a result of the anesthesia and the IV tubes twining all over me. I had tubes in my
nose, and a catheter running up my leg and into my penis. I was exhausted, drained to the
absolute center of my being.
But I was starving. I was used to my three square meals a day, thanks to my mother. I thought
of heaping hot plates of food, with gravy. I hadn't eaten anything in hours, and my last meal had
been some kind of cereal. Cereal wasn't a meal. I mean, come on. That was a snack.
A nurse fed me a plate of scrambled eggs.
"Can I see my mother?" I said.
After a bit, my mother came in quietly and held my hand. I understood how she felt, how
offended her sense of motherhood was by seeing me like that. I had come from the same skin as
hers, the physical matter that made me, every particle down to the last proton in the fingernail
on my smallest finger, belonged to her, and when I was a baby she had counted my breaths in
the night. She thought she had gotten me through the hard part, before this.
"I love you," I said. "I love my life, and you gave it to me, and I owe you so much for that."
I WANTED TO SEE MY FRIENDS, TOO. THE NURSES ALlowed
them to come in, two or three at a time. I had been careful to seem confident before the
surgery, but now that it was over, I didn't need to put up a front anymore, to hide how relieved I
was and how vulnerable I felt. Och came in, and then Chris, and they took my
hands, and it felt good to let go of some things, to show them how afraid I had been. "I'm not
done," I said. "I'm still here."
I was dazed, but I was aware of everyone who came into the room, and could sense what they
were feeling. Kevin's voice was choked with emotion. He was deeply upset, and I wanted to
reassure him.
"Why do you sound so serious?" I teased him.
He just squeezed my hand.
"I know," I said. "You don't like seeing your big brother all beat-up."
As I lay there, listening to the murmurs of my friends, two conflicting emotions welled up in me.
First, I felt a giant wave of gratitude. But then I felt a second wave, of anger, and that second
swell of feeling met the first one like two waves colliding. I was alive, and I was mad, and I
couldn't feel the one without feeling the other. I was alive enough to be mad. I was fighting
mad, swinging mad, mad in general, mad at being in a bed, mad at having bandages around my
head, mad at the tubes that tied me down. So mad I was beside myself. So mad I almost began
to cry.
Chris Carmichael grabbed my hand. By now Chris and I had been together for six years, and
there was nothing we couldn't tell each other, no feeling we couldn't admit t o .
"How you doing?" he asked.
"I'm great."
"Okay. Now, really, how do you feel?"
"Chris, I'm doing great."
"Yeah, right."
"Chris, you don't understand," I said, starting to cry. "I'm glad about this. You know what? I like
it like this. I like the odds stacked against me, they always have been, and I don't know any
other way. It's such bullshit, but it's just one more thing I'm going to overcome. This is the only
way I want it."
I REMAINED IN THE ICU OVERNIGHT. AT ONE POINT, A
nurse handed me a tube and told me to breathe into it. The tube was attached to a gauge with a
little red ball, and it was supposed to measure my lung capacity, to make sure the anesthesia
hadn't done something to my lungs.
"Breathe into this," the nurse said. "Now, don't worry if you only get the ball up one or two
notches."
"Lady, are you kidding me?" I said. "I do this for a living. Give me that fucker."
I grabbed the tube and breathed into it. The ball shot straight to the top. If it had had a bell, it
would have gone PING!
I handed it back to her.
"Don't ever bring that thing in here again," I said. "My lungs are fine."
The nurse left without a word. I looked over at my mother. My mother has always known I have
a mouth on me, and I figured I would hear from her because I had been so rude to the nurse. But
my mother was grinning as if I had just won another triple crown. She saw it for herself: nothing
was wrong with me. I was right back to normal.
"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.
six
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.
ONE DAY I NOTICED STRANGE MARKS ON MY SKIN, ALmost
like faint brown stains. They were chemo burns.
The drugs were scorching my tissues from the inside out, leaving patches of discoloration on my
flesh. By now I was well into the third cycle, and I didn't look like the same person. My
physique was shot, compared to the one I entered the hospital with. I took hobbling walks
around the floor to get a little exercise, pushing my IV pole, and I remember looking down at
myself in my gown. It was as though my body was being steadily diminished: my muscles were
smaller, and flaccid. This is the real McCoy, I thought. This is what it means to be sick.
"I need to stay in shape," I'd murmur. "I need to stay in shape."
I kept losing weight, no matter how hard I tried not to. I didn't have much to lose to begin
with–I had a very low percent of body fat, and the toxins ate away at me like a school offish,
nibbling. "LaTrice, I'm losing weight," I'd lament. "What can I do? Look at my muscles! Look
what's happening to me. I need to ride. I've got to get toned back up."
"Lance, it's chemo," LaTrice would say, in that supremely tolerant way. "You're going to lose,
it's automatic. Chemo patients lose weight."
I couldn't bear to stay in bed, dormant. As I lay in the sheets, doing nothing, I felt like something
that had washed up on a beach.
"Can I exercise, LaTrice?"
"Do you have a gym here, LaTrice?"
"Lance, this is a hospital," she'd say, with that great sighing forbearance of hers. "However, for
patients who have to stay with us for a long time, and for people like you, we do have stationary
bikes." "Can I do that?" I shot back.
LaTrice asked Nichols for an okay to let me use the gym, but Nichols was reluctant. My
immune system was almost nonexistent, and I wasn't in any condition to work out.
For all of her mocking exasperation with me, LaTrice seemed to sympathize with my restless
urge to move. One afternoon I was scheduled for an MRI scan to check my brain, but the
machines were fully booked, so LaTrice sent me over to the nearby children's hospital, Riley. An
underground tunnel of about a mile attached the two facilities, and the usual way to transport
patients between them was either in an ambulance, or in a wheelchair via the tunnel.
But I was determined to walk to Riley, not ride. I informed the nurse who showed up with a
wheelchair, "No way I'm getting in that thing." I told her we would be taking the tunnel to Riley
on foot, even if it meant walking all night. LaTrice didn't say a word. She just shook her head as
I set off. The nurse dragged my IV cart behind me.
I shuffled slowly through the tunnel, there and back. I looked like a stooped, limping old man.
The round-trip took over an hour. By the time I got back to my bed, I was exhausted and damp
with sweat, but I was triumphant.
"You just had to do it different," LaTrice said, and smiled. It became the biggest fight of all just
to move. By the fifth straight day of my third cycle of chemo, I was no longer able to take my
walks around the ward. I had to lie in bed for a full day until I regained enough strength to go
home. An attendant turned up Sunday morning with a wheelchair and offered me a ride to the
lobby to check out. But I refused to give in to it. I turned it down, angrily. "No way," I said. "I'm
walking out of here."
THE FRENCHMAN HOVERED OVER MY HOSPITAL BED, attempting to present me
with a $500 bottle of red wine as a token of his esteem. I stared at him from the depths of my
narcotic haze, half-conscious and too nauseated to respond. I did have the presence of mind to
\vonder why anyone would waste an expensive Bordeaux on a cancer patient.
Alain Bondue was the director of the Cofidis racing organization, and he had come to pay what
appeared to be a social call. But I was in no shape to make polite conversation; I was in the late
throes of my third cycle of chemo, and I was deathly pale with dark circles under my eyes. I had
no hair or eyebrows. Bondue spent a couple of awkward minutes pledging the support of the
team, and then took his leave.
"Lance, we love you," he said. "We're going to take care of you, I promise."
With that, he said goodbye, and I squeezed his hand. But as he left my bedside, Bondue
gestured to Bill Stapleton–he wanted him to come outside for a conversation. Bill followed
Bondue into the hallway, and abruptly, Bondue told Bill he had come to discuss some business
matters, and they needed to go someplace private for a meeting.
Stapleton and Bondue and a third man, a friend named Paul Sher-wen who spoke French and
offered to help interpret, gathered in a small, dimly lit conference room in the hotel across the
street from the hospital. Bondue began to chain-smoke as he explained to Bill in French that,
regrettably, Cofidis would be forced to renegotiate my contract because of my illness. My
agreement with the team was for $2.5 million over two years–but that would no longer be
possible.
Bill shook his head in confusion. "I'm sorry?" he said. Cofidis had CHEMO
publicly pledged to stand by me while I fought the illness, he said. Surely this wasn't the time to
discuss contracts, not in the middle of my chemotherapy.
"We love Lance; we want to take care of Lance," Bondue said in French. "But you have to
understand this is a cultural thing, and people in France don't understand how somebody can get
paid when they're not working."
Bill was stunned. He said, "I don't believe what I'm hearing." Bondue pointed out that my
contract had a clause stating I was required to pass a medical examination. Obviously, I was in
no condition to do that. Therefore Cofidis had the right to cancel the contract. They were
offering to renegotiate, which they felt was generous under the circumstances. They wanted to
honor part of it, but not all. If I didn't accept the new terms they offered, they would force me to
undergo the medical exam, and terminate the contract in its entirety. Bill stood up, looked
across the table, and said, "Fuck you." Bondue was startled.
Bill said it again. "Fuck you. I cannot believe you came all the way here at a time like this, and
you want me to go back in there and tell him that now."
Bill was beside himself–not so much that Cofidis would try to extricate themselves from the
contract, which they had the right to do, but at the timing, and the backhandedness of it. Cofidis
had made a statement to the world that they would stick with me, and they had reaped the
favorable press for it, but behind closed doors was another matter. Bill was fiercely protective of
me, and he flatly refused to raise the subject with me while I was in the midst of chemo.
"I'm not doing it," Bill said. "I'm not interested in talking about this, not right now. Do whatever
you guys want to do, and let it play out in the court of public opinion."
Bondue was unmoved. Legally, he intoned, surely Bill knew that we
didn't have a leg to stand on. Cofidis had the right to terminate that very day. Instantly.
"You understand it's subject to the medical exam," Bondue said again.
Bill said, "Are you going to send a doctor over here? Are you going to send a doctor over here to
do an exam?"
"Well, we might have to," Bondue said.
"Great," Bill said. "I'll have all the television cameras there, and you guys knock yourselves
out."
Bondue continued to insist that Cofidis was willing to keep me under some kind of contract–but
only if a set of conditions was imposed. Bill calmed down and tried to persuade Bondue that,
despite my appearance, I was getting better. Surely they could work something out? But
Bondue was firm, and after two more hours, they had gotten nowhere. Finally, Bill stood up to
leave. If Cofidis was pulling the rug out from under me while I was in the hospital, fine, he said,
"I'll let the whole world know you abandoned him." Abruptly, Bill ended the meeting.
"Do whatever you have to do," he said.
Shaken, Bill came back to my hospital room. He had been gone for over three hours by now, so
I knew something was wrong. As soon as the door to my room opened, I said, "What?"
"Nothing," Bill said. "Don't worry about it."
But I could see by the look on his face that he was upset, and I suspected I knew the reason
why.
"What?"
"I don't know what to say," Bill said. "They want to renegotiate this thing, and they'll make you
take a medical exam if they have to."
"Well, what are we going to do?"
"I've already told them to fuck off."
I thought about it. "Maybe we should just let it go," I said, tiredly.
I couldn't help wondering if the real reason for Bondue's trip was to appraise my health. I
thought then, and I still think, that he came to the hospital with a choice to make: if I looked
healthy, then he would take a positive attitude and let the deal stand, and if I looked very ill, he
would take the hard-line approach and renegotiate or terminate. We felt that it was nothing
more than a spy mission: see if Armstrong is dying. Apparently Bondue had taken one look at
me and decided I was on my deathbed.
Bill was crushed, and apologetic. "I'm sorry to give you one more piece of bad news."
But I had more important things to dwell on than Cofidis. Don't get me wrong, I was worried
about the money, and I was hurt by their timing, and by their halfhearted words of support. But
on the other hand, I had a more immediate problem to concentrate on–not puking.
Bill said, "We'll stall. We'll keep negotiating." He thought if he could put them off until
February, I might just be healthy enough to pass the medical exam. "We'll just see how this
plays out," he said. I just grunted, too nauseated to really care. I didn't want to talk about it
anymore.
Over the next three or four weeks, Cofidis pressed the issue and made it clear they weren't
bluffing, they would have no problem subjecting me to a medical test. They would fly their own
doctor over from France and cancel the entire contract. I continued to resist talking to Bill about
it, because I was at my sickest point in the chemo cycles. But Bill sat down in my room one day
and said, "Lance, they're serious." We had no choice but to accept whatever terms they gave
me.
he said.
In the end, Cofidis paid less than a third of the original two-year contract and required an out
clause for themselves for 1998.
It felt like a vote of no confidence. It felt like they thought I was dying. I got the message
Cofidis was sending: I was a dead man.
THE IRONY WAS, THE WORSE I FELT, THE BETTER I GOT.
That was the chemo for you.
By now I was so sick there were times I couldn't talk. So sick I couldn't eat, couldn't watch TV,
couldn't read my mail, couldn't even speak to my mother on the phone. One afternoon she called
me from work. I whispered, "Mom, I'm going to have to talk to you another time."
On the really bad days, I would lie on my side in bed, wrapped in blankets, fighting the noxious
roiling in my stomach and the fever raging under my skin. I'd peek out from under the blankets
and just grunt.
The chemo left me so foggy that my memory of that time is sketchy, but what I do know for
sure is that at my sickest, I started to beat the thing. The doctors would come in every morning
with the results of my latest blood-draw, and I began to get improved results. One thing unique
to the disease is that the marker levels are extremely telling. We tracked every little fluctuation
in my blood count; a slight rise or downturn in an HCG or AFP marker was cause for either
concern or celebration.
The numbers had incredible import for my doctors and me. For instance, from October 2, when I
was diagnosed, to October 14, when the brain lesions were discovered, my HCG count had
risen from 49,600 to 92,380. In the early days of my treatment, the doctors were sober when
they came into my room–I could tell they were suspending judgment.
But gradually they became more cheerful: the tumor markers began to drop. Then they began to
dive. Soon they were in a beautiful free fall. In fact, the numbers were dropping so fast that the
doctors were a little taken aback. On a manila file folder, I kept a chart of my blood
markers. In just one three-week period in November, they fell from 92,000 to around 9,000.
"You're a responder," Nichols told me.
I had opened up a gap on the field. I knew that if I was going to be cured, that was the way it
would go, with a big surging attack, just like in a race. Nichols said, "You're ahead of schedule."
Those numbers became the highlight of each day; they were my motivator, my yellow jersey.
The yellow jersey is the garment worn by the leader of the Tour de France to distinguish him
from the rest of the field.
I began to think of my recovery like a time trial in the Tour. I was getting feedback from my
team right behind me, and at every checkpoint the team director would come over the radio and
say, "You're thirty seconds up." It made me want to go even faster. I began to set goals with my
blood, and I would get psyched up when I met them. Nichols would tell me what they hoped to
see in the next blood test, say a 50 percent drop. I would concentrate on that number, as if I
could make the counts by mentally willing it. "They've split in half," Nichols would say, and I
would feel like I had won something. Then one day he said, "They're a fourth of what they
were."
I began to feel like I was winning the battle against the disease, and it made my cycling instincts
kick in again. I wanted to tear the legs off cancer, the way I tore the legs off other riders on a
hill. I was in a breakaway. "Cancer picked the wrong guy," I bragged to Kevin Livingston.
"When it looked around for a body to hang out in, it made a big mistake when it chose mine.
Big mistake."
One afternoon Dr. Nichols came into my room and read me a new number: my HCG was just
96. It was a slam-dunk. From now on it was just a matter of getting through the last and most
toxic part of the treatments. I was almost well.
But I sure didn't feel like it. That was chemo for you.
BACK HOME IN TEXAS BETWEEN CHEMO CYCLES I WOULD gradually recover some
strength, until I could begin to move again. I craved air and exercise.
Friends didn't let on how weak I had become. My out-of-town visitors must have been shocked
at my pale, wasted, bald appearance, but they hid it well. Frankie Andreu came to stay with me
for a week, and Chris Carmichael, and Eric Heiden, the great Olympic
speedskater-turned-physician, and Eddy Merckx. They cooked for me, and took me on short
walks and bicycle rides.
We'd leave my front door and go up a curving asphalt road that led to Mount Bonnell, a craggy
peak above the Austin riverbank. Normally my friends had to sprint to keep up with my
gear-mashing and hammering pedal strokes, but now we moved at a crawl. I would get winded
on a completely flat road.
I don't think I had fully admitted the effect chemotherapy had on my body. I came into the
cancer fight very brash and fit and confident, and I could see with each cycle that I was being
drained somewhat, but I had no idea how incapacitating it truly was until I almost collapsed in a
stranger's front yard.
Bike riding wasn't part of Dr. Nichols' recommendation. He didn't outright forbid it, but he said,
"This is not the time to try to maintain or improve your fitness. Don't stress your body." I didn't
listen–I was panicked at the idea that I would be so deconditioned by the chemo that I might
never recover. My body was atrophying.
When I felt up to it, I would say to Kevin or Bart, "Let's go out and ride the bike." At first we
would ride for anywhere from 30 to 50 miles, and I pictured myself as defiant, indefatigable,
head down into the wind, racing along a road. But in reality the rides weren't like that at all;
they were fairly desperate and feeble acts.
By the end of my treatments we would ride for half an hour, a simple loop around the
neighborhood, and I told myself that as long as I could do that, I was staying in tolerable shape.
But then two incidents showed me exactly how weakened I was. One afternoon I went out with
Kevin, Bart, and Bart's fiancee, Barbara, and about halfway through the ride we reached a short,
steep hill. I thought I was keeping up, but the truth was, my friends were being kind. In fact,
they were moving so slowly they almost fell over sideways on their bikes. Sometimes they
would pull ahead accidentally, and I would churn behind them, lamenting, "You're killing me."
They were careful not to overwork me, so I had little concept of how fast or how slow we were
going. I actually thought I was staying with them as we worked up the hill.
All of a sudden, a figure moved up on my left. It was a woman in her 50s on a heavy mountain
bike, and she went right by me.
She cruised, without even breathing hard, while I puffed and chugged on my high-performance
bike. I couldn't keep up with her. In cycling terms it's called getting dropped. I was giving it
everything, and I couldn't stay with her.
You fool yourself. You fool yourself into thinking you might be riding faster and feeling better
than you really are. Then a middle-aged woman on a mountain bike passes you, and you know
exactly where you stand. I had to admit I was in bad shape.
It became an increasing struggle to ride my bike between the chemotherapy sessions, and I had
to accept that it was no longer about fitness. Now I rode purely for the sake of riding–and that
was new for me. To ride for only half an hour. I had never gone out for such a trivial amount of
time on a bike.
I didn't love the bike before I got sick. It was simple for me: it was my job and I was successful
at it. It was a means to an end, a way t o
My mother looked even younger than seventeen when she had me.
In a way, we grew up together.
(Courtesy of Linda Armstrong)
At twelve, I was a swimming prodigy, and a well-fed one. In the kitchen with my best friend
and biggest supporter.
(Courtesy of Linda Armstrong)
My ninth birthday, September 18, 1980. You can tell by my pressed shirt and the size of the
cake that my mom made sure I didn't go without. (Courtesy of Linda Armstrong)
Walking into the sunset in Santa Barbara. (Baron Spafford)
get out of Piano, a potential source of wealth and recognition. But it was not something I did
for pleasure, or poetry; it was my profession and my livelihood, and my reason for being, but I
would not have said that I loved i t .
I'd never ridden just to ride in the past–there had to be a purpose behind it, a race or a training
regimen. Before, I wouldn't even consider riding for just thirty minutes or an hour. Real cyclists
don't even take the bike out of the garage if it's only going to be an hour-long ride.
Bart would call up and say, "Let's go hang out and ride bikes."
"What for?" I'd say.
But now I not only loved the bike, I needed it. I needed to get away from my problems for a
little while, and to make a point to myself and to my friends. I had a reason for those rides: I
wanted everyone to see that I was okay, and still able to ride–and maybe I was trying to prove it
to myself, too.
"How's Lance doing?" people would say.
I wanted my friends to say, "Well, he seems pretty good. He's riding his bike."
Maybe I needed to tell myself that I was still a rider, not just a cancer patient, no matter how
weak I had become. If nothing else, it was my way of countering the disease and regaining the
control it had stripped from me. I can still do this, I told myself. I might not be able to do it like I
used to, but I can still do it.
Then one day Kevin and another friend and local cyclist, Jim Woodman, came over to take me
for our usual little ride. I still had the scars from my surgery, so I wore a helmet, and we moved
at a very slow pace, just idling along. Again, it wasn't anything I would have previously
classified as a ride.
We came to a small rise in the road, nothing difficult at all, just an incline that required you to
rise from your seat and stroke down on the pedals once or twice. I'd done it a million times. Up,
down, and then sit and coast into a left-hand turn, and you're out of the neighborhood.
I couldn't do it. I got halfway up the incline, and I lost my breath. My bike wobbled beneath me,
and I stopped, and put my feet down on the pavement. I felt faint.
I tried to breathe, but I couldn't seem to draw in enough air to revive myself. Black and silver
specks fluttered behind my eyes. I dismounted. Kevin and Jim wheeled around and stopped
short, concerned.
I sat down on the curb in front of a stranger's house and dropped
my head between my knees.
Kevin was at my side in an instant. "Are you okay?" he said. "Just let me catch my breath," I
wheezed. "Go ahead without me, I'll get a ride home."
Jim said, "Maybe we should get an ambulance." "No," I said. "Just let me sit here for a second." I
could hear myself trying to breathe. It sounded like Whoo. Whoo. Suddenly, even sitting up felt
like too much effort. I felt a rushing light-headedness, similar to the sensation you get when you
stand up too quickly–only I wasn't standing.
I lay back on the lawn, staring at the sky, and closed my eyes.
Is this dying?
Kevin hovered over me, distraught. "Lance!" he said, loudly.
"Lance!"
I opened my eyes.
"I'm calling the ambulance," he said, desperately.
"No," I said, angrily. "No, no, I just need to rest."
"Okay, okay," he said, calming us both down.
After a few minutes, I gradually recovered my breath. I sat up, and tried to pull myself together.
I stood. I tentatively straddled my bike.
My legs felt shaky, but I was able to ride downhill. We coasted very slowly back the way we
came, and made our way back to my house. Kevin and Jim rode right next to me, never taking
their eyes off me.
Between deep breaths, I explained to them what had happened. The chemo had robbed me of
healthy blood cells and wiped out my hemoglobin count. Hemoglobin transports oxygen to your
vital areas, and a normal value of hemoglobin for a fit person is about 13 to 15.
I was at seven. My blood was totally depleted. The chemo had attacked my blood relentlessly
every two weeks, Monday through Friday, and I had finally overdone the bike riding.
I paid for it that day.
But I didn't stop riding.
THERE ARE ANGELS ON THIS EARTH AND THEY COME IN subtle forms, and I
decided LaTrice Haney was one of them. Outwardly, she looked like just another efficient,
clipboard-and-syringe-wielding nurse in a starched outfit. She worked extremely long days and
nights, and on her off hours she went home to her husband, Randy, a truck driver, and their two
children, Taylor, aged seven, and Morgan, four. But if she was tired, she never seemed it. She
struck me as a woman utterly lacking in ordinary resentments, sure of her responsibilities and
blessings and unwavering in her administering of care, and if that wasn't angelic behavior, I
didn't know what was.
Often I'd be alone in the late afternoons and evenings except for LaTrice, and if I had the
strength, we'd talk seriously. With most people I was shy and terse, but I found myself talking to
LaTrice, maybe because she was so gentle-spoken and expressive herself. LaTrice was only in
her late 20s, a pretty young woman with a coffee-and-cream complexion, but she had
self-possession and perception beyond her years. While other people our age were out
nightclubbing, she was already the head nurse for the oncology research unit. I wondered why
she did it. "My satisfaction is to make it a little easier for people," she said.
She asked me about cycling, and I found myself telling her about the bike with a sense of
pleasure I hadn't realized I possessed. "How did you start riding?" she asked me. I told her about
my first bikes, and the early sense of liberation, and that cycling was all I had done since I was
16. I talked about my various teammates over the years, about their humor and selflessness, and
I talked about my mother, and what she had meant to me.
I told her what cycling had given me, the tours of Europe and the extraordinary education, and
the wealth. I showed her a picture of my house, with pride, and invited her to come visit, and I
showed her snapshots of my cycling career. She leafed through images of me racing across the
backdrops of France, Italy, and Spain, and she'd point to a picture and ask, "Where are you
here?"
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Adventures of Huckleberry Finn