It's Not About the Bike: My Journey Back to Life (11 page)

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 it.

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?

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