The Cost of Hope (10 page)

“That’s so we can tell which machine needs attention,” Dr. Gown explains—when they have finished their work, for example. We walk past a white, coffin-shaped contraption. The device sends one cell at a time shooting through a tunnel, so that each individual cell can be examined. “That baby cost twice what my first house in Seattle did,” says a technician sitting nearby. I look the machine up online. It’s called a flow cytometer. Such machines can cost $75,000, $100,000—even $200,000.

A second technician sits at the computer screen that goes with it, grappling with analyzing the cells from a blood cancer.

The lab at PhenoPath gets the complicated cases. The difficult cases. The ones that other doctors can’t figure out, or that they disagree on.

But even Dr. Gown has seen only a few collecting duct cases in his lifetime.

When Dr. Howard sent Terence’s cells here, all he knew was what they did
not
react to. That’s why he sent them to Dr. Gown: Back in 2001, Dr. Gown had access to more antibodies and more tests. To Terence’s cells, he applied an antibody—34βE12—and the cells turned an angry, positive color. Today he taps a few keys on his computer and the picture of Terence’s cells from back
then—a deeply hued abstract of brown, purple, and black—appears on the screen.

“I developed that antibody when I was a professor at the University of Washington,” he says casually. It is now used by pathologists all over the world. “The university makes millions of dollars every year from it,” he says. Then he holds up his thumb and forefinger an inch apart: “Full disclosure—I make this much.”

Dr. Gown did four tests on Terence’s cells, using the antibody he developed, as well as three others. Two tests were positive, two negative, a pattern that led him to conclude that the tumor was indeed of the collecting duct variety. On January 29, 2001, he sent that report back to Dr. Howard, and that is when Dr. Turner called us with the news.

I remember clearly how anxiously Terence and I awaited the report, and how we pored over it for clues. Yet now, in retrospect, I wonder why we bothered. In fact, I wonder why we spent so much time and money—not to mention the brainpower of two such extraordinary men—on plumbing the internal workings of the cell. The tests showed us all what the disease might be. Not what we should do about it.

Back then, very little besides surgery was available to treat kidney cancer. What there was didn’t seem to be particularly effective. Chemotherapy didn’t work at all. For Dr. Howard, that is one of the frustrations of the job—and was even more so then.

“A lot of what we do is gilding the lily,” he says. “It’s interesting and very academic, but it’s not like I learn something that says I’ll reach for this drug or that drug and this will make the difference.”

Now I ask Dr. Gown the same question. His answer is similarly cheerfully direct, as I know Terence’s would have been if he had been the doctor: We do it for the knowledge. “This may not be important
now
,” he says. But it may be important in a year. “There’s always the possibility of things happening down the pike. There’s always a hope that we’ll find a therapy.”

• • •

It’s that hope that kept me obsessively prowling the Internet a decade before my conversations with Drs. Gown and Howard. There were tantalizing signs that something was changing in cancer treatment. It was just hard for me to figure out how and where and how it applied to us. Right in our own back yard, Brian Druker, an oncologist up the hill at Oregon Health and Science University, had found a new way of attacking cancers. His discovery—that by blocking certain enzymes you can keep the cancer from dividing—changed everything, but only for a tiny number of people with very specific cancers. His drug—which would be named Gleevec—was still several months from Food and Drug Administration approval. But the Internet back then was already alive with stories of patients whose chronic myeloid leukemia was halted in its tracks by the drug. Dr. Druker’s face appeared on the cover of
Time
magazine for turning what was once a death sentence into a chronic illness. Surely there must be something like that on the horizon for kidney cancer.

That was what I was looking for.

“Something is happening out there,” I tell Terence at the time. “They are discovering new things all the time.” I don’t know what that something is, but I believe we will find it. “We will just have to keep you alive until they discover the cure for this. All we need is a few years.”

I am blindly optimistic.

I even believe myself.

Just after the operation, Terence and I consider a few extreme possibilities. One article mentions interesting work by a doctor in Paris. We’re not even quite sure what he’s doing, but we consider—for an instant—relocating. I prowl the biggest cancer centers—MD Anderson in Texas, Sloan-Kettering in New York, Fred
Hutchinson in Seattle. No one seems to know much more than I do about collecting duct cancer.

On February 9, 2001, Dr. Turner takes Terence’s file before the tumor board at Providence Portland, where all the hospital’s specialists review cases. Because there is no sign of metastases—the spread of the cancer from the kidney to other organs—Dr. Turner’s recommendation to the board, and to us, is that we do a chest X-ray to make sure his lungs are clear and then follow up with scans every six months.

Watchful waiting, it’s called.

Waiting for him to die is what we feared.

Yet he doesn’t die.

He gets better.

We don’t know why. We try not to think about it.

It’s like the pictures I remember from 1975, the year I graduated from college and the year that the war in Lebanon tore that country apart. I remember photos of women, baskets over their arms, stepping gingerly over the rubble during a lull in the fighting, heading for market.

I think: How much people want life to return to normal!

On February 15, 2001, Terence’s chest X-ray comes back clear. He begins to feel better. We gradually put the trauma out of our minds and our routines start to take over once again. Jazz band for Terry. Ice skating for Georgia. Mornings at Starbucks with coffee for me and Terence, hot chocolate and lemon pound cake for the kids. Terence goes back to cooking chili and lasagna, and we resume going to church at the cathedral downtown.

On April Fools’ Day, the children and I pull off one of our best
pranks ever. Even at his healthiest, Daddy is never at his best in the morning. So we carefully plan to tease him about that fact. After Terence goes to bed, Terry and Georgia and I get up and race around the house, moving all the clocks forward one hour. We change the kitchen clock. We change the alarm clock. We change the clocks on the microwave and the stove. I sneak in and get his watch and move the hands forward. Terry even remembers to go out to the car and change the clock on the dash. The next morning, I shake Terence awake.

“We’ve overslept!”

He has a meeting to see a man about a trumpet at nine o’clock in Oregon City, across the bridge.

“It’s already eight thirty!” I cry, and the kids play along, pretending to be upset about being late for school. Terence throws on his clothes and stumbles out the door.

Several hours later, I get a call at work.

“Very funny.”

It takes him a full hour of waiting outside a locked store to realize he’s been had. The kids are delighted.

While Terence is sick and recovering, I am coddling, conciliatory. I tiptoe around his moods and try to arrange things the way he likes. As he recovers, the old ways reemerge.

I leave on a trip for several days. His friend Patrick comes to stay. When I return on a Saturday morning, I can hardly push the back door open against all the recycling piled up in the laundry room. Cheerios boxes. Paper towel rolls. Empty cans of tomato paste and red beans. Empty two-liter bottles of Diet Coke. I walk through the kitchen, where dishes—cooking and eating—are piled on the countertops. On the table. In the sink. I spot evidence of spaghetti. Several empty pizza boxes. The garbage cans are overflowing. They clearly haven’t been emptied in days. On past
into the living room, where unsorted, unfolded laundry covers every surface. Evidently some clothes had not completely dried, because underwear, socks, pajamas, and jeans are draped over the backs of chairs and the sofa and even over the tops of lampshades. As I walk down the stairs to the family room below, I smell the untouched cat litter box.

I find Georgia and Terry in pajamas and Patrick and Terence in their underwear in front of the television set. More dishes and food, bowls and glasses. Several days’ worth of newspapers are layered on the carpet. All four of them have colds. There are boxes of Kleenex everywhere, and the floor is covered with crumpled, used tissues, tossed every which way.

I am screaming before I make it halfway across the room.

“You are pigs! Pigs! All of you! You too, Patrick.”

They all freeze in place.

“How can you even think of sitting here like this? This is disgusting!”

No one moves.

“Get up. Now. All of you. Get this mess cleaned up. You too, Patrick.”

I’m raging.

“Terence, how could you? How could you let them? How can you even sit here in this pigpen?”

Finally Terence reacts.

He becomes furious.

With me.

His face reddens. He outshouts me. The old Terence is back.

“You told me you were coming home Saturday
night
!”

In the last week of May 2001, Terence, at age sixty-one, finally gets his Ph.D., completing the degree he began in 1957.

I see in the history of that degree a zigzag, ebullient path of almost dizzying choices. Books. Music. Friends. Adventure. Mystery. Travel. Language. Study. I peer back with amazement into the kaleidoscope that was his life before me.

He spent only one semester in college when he was seventeen, a tuba player in the famous Ohio State University marching band. Even today mail from TBDBITL—The Best Damn Band in the Land—comes to the house addressed to him. It has followed him for fifty years, past his death, through at least twenty-three address changes in three countries and nine states that I can count.

After that came the navy, and his stint in the Philippines translating Chinese radio transmissions of ship movements. He mystified his friends with hints of all the things his security clearance prevented him from saying. When he left the navy, he reinvented himself again—this time as a radio announcer in Xenia, Ohio.

Sometime in 1966 something pulled him west, and soon the cable car conductors and brakemen of the San Francisco Municipal Railway Company began to hear rumors of the new guy working the cars who spoke Chinese better than the Chinese.

Today as I stare at the picture of him grinning out the back window of cable car number 509 in his conductor’s uniform, I think I know what drew him there. In the photo, the car is suspended at a gravity-defying angle. Over Terence’s shoulder Hyde
Street drops down to the San Francisco Bay. The view from the Powell-Hyde line stretches out across the bay. Alcatraz is below. Off in the distance, Angel Island.

Even now I can see him clearly as he was back then, twenty-six years old, in the uniform vest, jacket, and tie, a six-slot steel change belt strapped to his waist, flirting with the young women on their way to work as they jump onto the wooden steps. In my imagination, I can see him leaning into the wind and reciting Tu Fu’s eighth-century laments of loneliness that I know he has already come to love.

I can see him, lurking unseen one afternoon behind a Chinese family frantically arguing over the itinerary.

“Xiage zhan, zai xia che,”
I can hear him say, as if it is the most natural thing in the world: Wait till the next stop, then get off, he is telling them. I can see his glee as the Chinese family starts as if a dog has spoken.

Even back then Terence was already painting fanciful pictures of his dark past, hinting at secrets he could tell if he chose, wives and children left behind and mysterious trips to places no one else had visited. His friend Dick Epstein, himself a brilliant oddball wanderer, worked as a gripman on the same cable cars. He remembers even then the whispers that Foley was a spy.

Dick and Terence shouted and argued about the things young people shouted and argued about in the 1960s. The war. The economy. Marxism. Communism. Capitalism. The military-industrial complex.

On and on they argued until one day they stuffed their savings
into their pockets, jumped off the cable cars, and headed to Europe, and then on to crisscrossing the Soviet Union. Moscow. Novgorod. St. Petersburg. Vyborg.

It wasn’t until after that trip that Terence in 1969—by then twenty-nine years old and married—developed a hunger for school again. He threw himself into his studies as if some vacuum at his core needed to be filled up with all the learning in the world. Years later, boxes in our basement were filled with all his college notes in his round, easily legible handwriting, clipped in old-fashioned red, buff, green, and blue cardboard binder covers.

Modern Korean history. Japanese philosophy. Chinese politics. Modern Japanese literature. Medieval Chinese history. Japanese foreign policy. Even after nearly forty years his notes would remain clear and coherent. They include details about the third-century scholars who formed literary clubs—the most famous of whom were named “The Seven Sages of the Bamboo Grove.” They drank and discussed metaphysical problems long into the night.

No wonder the China we both knew disappointed him so!

His notes reveal the world he built for himself from his studies, a world as romantic and crazy and eccentric as he, a world that he could live in happily.

Still, he was restless. Partway through his master’s degree, he threw it over and moved to Vermont. For a time, he and his wife lived in a converted Vermont schoolhouse with the anthropologist Margaret Mead, whom he befriended at Columbia. He worked in a prison. He got a job with state government promoting Vermont agricultural products around the world. He moved to Missouri. He learned soybeans. He traveled to China and met me.