It's Not About the Bike: My Journey Back to Life (12 page)

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