Love at first sight is often cured by a second look.
Love is sweet when it’s new, but sweeter when it’s true.
Liên Kết Nhanh
Biên tập viên
Cập nhật: It's Not About the Bike: My Journey Back to Life
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A4CHAPTER FIVE
C
ONVERSATIONS WITH CANCERTHERE 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 it.
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? SOME-
times 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 to.
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 AL-
lowed 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 to.
“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.
