The last lecture (5 page)

I
N
1969, when I was eight years old, my family went on a cross-country trip to see Disneyland. It was an absolute quest. And once we got there, I was just in awe of the place. It was the coolest environment I’d ever been in.

As I stood in line with all the other kids, all I could think was “I can’t wait to make stuff like this!”

Two decades later, when I got my PhD in computer science from Carnegie Mellon, I thought that made me infinitely qualified to do anything, so I dashed off my letters of application to Walt Disney Imagineering. And they sent me some of the
nicest
go-to-hell letters I’d ever received. They said they had reviewed my application, and they did not have “any positions which require your particular qualifications.”

Nothing? This is a company famous for hiring armies of people to sweep the streets! Disney had nothing for me? Not even a broom?

So that was a setback. But I kept my mantra in mind: The brick walls are there for a reason. They’re not there to keep us out. The brick walls are there to give us a chance to show how badly we want something.

Fast-forward to 1995. I’d become a professor at the University of Virginia, and I’d helped build a system called “Virtual Reality on Five Dollars a Day.” This was at a time when virtual reality experts were insisting they’d need a half-million dollars to do anything. And my colleagues and I did our own little version of the Hewlett-Packard garage thing and hacked together a working low-budget virtual reality system. People in the computer science world thought this was pretty great.

Not too long after, I learned that Disney Imagineering was working on a virtual reality project. It was top secret, and it was an Aladdin attraction that would allow people to ride a magic carpet. I called Disney and explained that I was a virtual reality researcher looking for information on it. I was ridiculously persistent, and I kept getting passed on and on until I was connected to a guy named Jon Snoddy. He happened to be the brilliant Imagineer running the team. I felt as if I had called the White House and been put through to the president.

After we chatted a while, I told Jon I’d be coming to California. Could we get together? (Truth was, if he said yes, the only reason I’d be coming would be to see him. I’d have gone to
Neptune
to see him!) He told me OK. If I was coming anyway, we could have lunch.

Before going to see him, I did eighty hours of homework. I asked all the virtual reality hotshots I knew to share their thoughts and questions about this Disney project. As a result, when I finally met Jon, he was wowed by how prepared I was. (It’s easy to look smart when you’re parroting smart people.) Then, at the end of the lunch, I made “the ask.”

“I have a sabbatical coming up,” I said.

“What’s that?” he asked, which was my first hint of the academic/entertainment culture clash I’d be facing.

After I explained the concept of sabbaticals, he thought it would be a fine idea to have me spend mine with his team. The deal was: I’d come for six months, work on a project, and publish a paper about it. I was thrilled. It was almost unheard of for Imagineering to invite an academic like me inside their secretive operation.

The only problem: I needed permission from my bosses to take this kind of oddball sabbatical.

Well, every Disney story needs a villain, and mine happened to be a certain dean from the University of Virginia. “Dean Wormer” (as Jai dubbed him in homage to the film
Animal House
) was concerned that Disney would suck all this “intellectual property” out of my head that rightfully belonged to the university. He argued against my doing it. I asked him: “Do you think this is a good idea at all?” And he said: “I have no idea if it is a good idea.” He was proof that, sometimes, the most impenetrable brick walls are made of flesh.

Because I was getting nowhere with him, I took my case to the dean of sponsored research. I asked him: “Do you think it’s a good idea that I do this?” And he answered: “I don’t have enough information to say. But I do know that one of my star faculty members is in my office and he’s really excited. So tell me more.”

My sister and me on the Alice ride: All I could think was, “I can’t wait to make stuff like this.”

Now, here’s a lesson for managers and administrators. Both deans said the same thing: They didn’t know if this sabbatical was a good idea. But think about how differently they said it!

I ended up being allowed to take that sabbatical, and it was a fantasy come true. In fact, I have a confession. This is exactly how geeky I am: Soon after I arrived in California, I hopped into my convertible and drove over to Imagineering headquarters. It was a hot summer night, and I had the soundtrack to Disney’s
The Lion King
blasting on my stereo. Tears actually began streaming down my face as I drove past the building. Here I was, the grown-up version of that wide-eyed eight-year-old at Disneyland. I had finally arrived. I was an Imagineer.

M
Y MEDICAL
odyssey began in the summer of 2006, when I first felt slight, unexplained pain in my upper abdomen. Later, jaundice set in, and my doctors suspected I had hepatitis. That turned out to be wishful thinking. CT scans revealed I had pancreatic cancer, and it would take me just ten seconds on Google to discover how bad this news was. Pancreatic cancer has the highest mortality rate of any cancer; half of those diagnosed with it die within six months, and 96 percent die within five years.

I approached my treatment like I approach so many things, as a scientist. And so I asked lots of data-seeking questions, and found myself hypothesizing along with my doctors. I made audio tapes of my conversations with them, so I could listen more closely to their explanations at home. I’d find obscure journal articles and bring them with me to appointments. Doctors didn’t seem to be put off by me. In fact, most thought I was a fun patient because I was so engaged in everything. (They even didn’t seem to mind when I brought along advocates—my friend and colleague Jessica Hodgins came to appointments to offer both support and her brilliant research skills in navigating medical information.)

I told doctors that I’d be willing to endure anything in their surgical arsenal, and I’d swallow anything in their medicine cabinet, because I had an objective: I wanted to be alive as long as possible for Jai and the kids. At my first appointment with Pittsburgh surgeon Herb Zeh, I said: “Let’s be clear. My goal is to be alive and on your brochure in ten years.”

I turned out to be among the minority of patients who could benefit from what is called the “Whipple operation,” named for a doctor who in the 1930s conjured up this complicated procedure. Through the 1970s, the surgery itself was killing up to 25 percent of patients who underwent it. By the year 2000, the risk of dying from it was under 5 percent if done by experienced specialists. Still, I knew I was in for a brutal time, especially since the surgery needed to be followed by an extremely toxic regimen of chemotherapy and radiation.

As part of the surgery, Dr. Zeh removed not only the tumor, but my gallbladder, a third of my pancreas, a third of my stomach, and several feet of my small intestine. Once I recovered from that, I spent two months at MD Anderson Cancer Center in Houston, receiving those powerful dosages of chemo, plus daily high-dose radiation of my abdomen. I went from 182 to 138 pounds and, by the end, could hardly walk. In January, I went home to Pittsburgh and my CT scans showed no cancer. I slowly regained my strength.

In August, it was time for my quarterly check-in back at MD Anderson. Jai and I flew to Houston for the appointment, leaving the kids with a babysitter back home. We treated the trip like something of a romantic getaway. We even went to a giant water park the day before—I know, my idea of a romantic getaway—and I rode the speed slide, grinning all the way down.

Then, on August 15, 2007, a Wednesday, Jai and I arrived at MD Anderson to go over the results of my latest CT scans with my oncologist, Robert Wolff. We were ushered into an examining room, where a nurse asked a few routine questions. “Any changes in your weight, Randy? Are you still taking the same medications?” Jai took note of the nurse’s happy, singsong voice as she left, how she cheerily said, “OK, the doctor will be in to see you soon,” as she closed the door behind her.

The examining room had a computer in it, and I noticed that the nurse hadn’t logged out; my medical records were still up on the screen. I know my way around computers, of course, but this required no hacking at all. My whole chart was right there.

“Shall we have a look-see?” I said to Jai. I felt no qualms at all about what I was about to do. After all, these were my records.

I clicked around and found my blood-work report. There were 30 obscure blood values, but I knew the one I was looking for: CA 19-9—the tumor marker. When I found it, the number was a horrifying 208. A normal value is under 37. I studied it for just a second.

“It’s over,” I said to Jai. “My goose is cooked.”

“What do you mean?” she asked.

I told her the CA 19-9 value. She had educated herself enough about cancer treatment to know that 208 indicated metastasis: a death sentence. “It’s not funny,” she said. “Stop joking around.”

I then pulled up my CT scans on the computer and started counting. “One, two, three, four, five, six…”

I could hear the panic in Jai’s voice. “Don’t tell me you’re counting tumors,” she said. I couldn’t help myself. I kept counting aloud. “Seven, eight, nine, ten…” I saw it all. The cancer had metastasized to my liver.

Jai walked over to the computer, saw everything clearly with her own eyes, and fell into my arms. We cried together. And that’s when I realized there was no box of tissues in the room. I had just learned I would soon die, and in my inability to stop being rationally focused, I found myself thinking: “Shouldn’t a room like this, at a time like this, have a box of Kleenex? Wow, that’s a glaring operational flaw.”

There was a knock on the door. Dr. Wolff entered, a folder in his hand. He looked from Jai to me to the CT scans on the computer, and he knew what had just happened. I decided to just be preemptive. “We know,” I said.

By that point, Jai was almost in shock, crying hysterically. I was sad, too, of course, and yet I was also fascinated by the way in which Dr. Wolff went about the grim task before him. The doctor sat next to Jai to comfort her. Calmly, he explained to her that he would no longer be working to save my life. “What we’re trying to do,” he said, “is extend the time Randy has left so he can have the highest quality of life. That’s because, as things now stand, medical science doesn’t have anything to offer him to keep him alive for a normal life span.”

“Wait, wait, wait,” Jai said. “You’re telling me that’s it? Just like that, we’ve gone from ‘we’re going to fight this’ to ‘the battle is over’? What about a liver transplant?”

No, the doctor said, not once the metastasis occurs. He talked about using palliative chemo—treatment that’s not intended to be curative, but could ease symptoms, possibly buying a few months—and about finding ways to keep me comfortable and engaged in life as the end approached.

The whole horrible exchange was surreal for me. Yes, I felt stunned and bereft for myself and especially for Jai, who couldn’t stop crying. But a strong part of me remained in Randy Scientist Mode, collecting facts and quizzing the doctor about options. At the same time, there was another part of me that was utterly engaged in the theater of the moment. I felt incredibly impressed—awed really—by the way Dr. Wolff was giving the news to Jai. I thought to myself: “Look at how he’s doing this. He’s obviously done this so many times before, and he’s good at it. He’s carefully rehearsed, and yet everything is still so heartfelt and spontaneous.”

I took note of how the doctor rocked back in his chair and closed his eyes before answering a question, almost as if that was helping him think harder. I watched the doctor’s body posture, the way he sat next to Jai. I found myself almost detached from it all, thinking: “He isn’t putting his arm around her shoulder. I understand why. That would be too presumptuous. But he’s leaning in, his hand on her knee. Boy, he’s good at this.”

I wished every medical student considering oncology could see what I was seeing. I watched Dr. Wolff use semantics to phrase whatever he could in a positive light. When we asked, “How long before I die?” he answered, “You probably have three to six months of good health.” That reminded me of my time at Disney. Ask Disney World workers: “What time does the park close?” They’re supposed to answer: “The park is
open
until 8 p.m.”

In a way, I felt an odd sense of relief. For too many tense months, Jai and I had been waiting to see if and when the tumors would return. Now here they were, a full army of them. The wait was over. Now we could move on to dealing with whatever came next.

At the end of the meeting, the doctor hugged Jai and shook my hand, and Jai and I walked out together, into our new reality.

Leaving the doctor’s office, I thought about what I’d said to Jai in the water park in the afterglow of the speed slide. “Even if the scan results are bad tomorrow,” I had told her, “I just want you to know that it feels great to be alive, and to be here today, alive with you. Whatever news we get about the scans, I’m not going to die when we hear it. I won’t die the next day, or the day after that, or the day after that. So today, right now, well this is a wonderful day. And I want you to know how much I’m enjoying it.”

I thought about that, and about Jai’s smile.

I knew then. That’s the way the rest of my life would need to be lived.