The Cost of Hope (15 page)

So how do we get from “Wow” in 2001 to Dr. Bukowski’s different diagnosis, and to our surprise in 2002 when Dr. Bukowski says pretty much the same thing the letter says?

So how did this Dr. Troncoso—a name I don’t recognize—get involved in the first place? Even though I don’t recognize her name I do remember clearly that her involvement is my doing. Right after Dr. Turner removed Terence’s kidney, I couldn’t quite believe the conclusion that Terence had such a rare disease. I
asked for one more review. I even remember writing the $250 check, and I remember my own suggestion that the slides be sent to MD Anderson. But after that, my memory goes dark.

And so, apparently, does everyone else’s. I ask everyone involved and find that what happened next is pretty much lost to time. Perhaps someone called and read us the letter and we forgot? Perhaps someone simply forgot to tell us? More likely, judging from my recent conversations with Dr. Turner the surgeon, Dr. Howard the pathologist, and Dr. Gown, the superpathologist with the mooing machines, this is sort of what happened: At Providence Portland, the pathologist Dr. Howard reviewed the opinion from Dr. Troncoso that I had solicited from MD Anderson. Then, as he did at the very outset of Terence’s illness, Dr. Howard consulted the expert Dr. Gown in his Seattle lab. Dr. Gown looked at the MD Anderson methodology, which involved looking at the shape of the cells. Dr. Gown considered his own methodology, which involved checking chemical reactions to certain proteins. He called in another colleague to consult. Together, they all concluded that they were right and Dr. Troncoso was wrong and told Dr. Turner so. Then, I surmise, Dr. Turner called and told us something like this: “There is some controversy about the exact kind of cancer it is, but our best guess is still collecting duct.”

Which, of course, was absolutely true.

Best guess.

When I return to Cleveland in 2009 to see Dr. Bukowski again, he has retired. We meet in a small office in a row outside the check-in hall where Terence and I used to await our appointments. Dr. Bukowski has shaved off his mustache and now looks less like a butcher than like the round-faced little boy he must once have been. He has a consulting business. He sits on the boards of some medical technology companies.

I ask him about Terence.

“I remember him vividly,” says Dr. Bukowski.

Dr. Bukowski sits behind the desk to answer my questions, still the doctor despite the sport shirt and more relaxed demeanor. As we review the decisions we made together in 2002, I am struck by one thing: Here is one of the world’s leading experts on kidney cancer, at one of the world’s foremost medical centers. Here is a man who knows all the world’s most cutting-edge research, who attends conferences with the world’s best scientists. This is a man who looks at my husband and speaks in a clear voice with an unambiguous message. Yet the more we talk about what he—and we—did and didn’t know in 2002, the more it becomes clear to me that in many ways this disease is every bit as confounding for the other doctors, and for him, as it was for us.

Up until 1995, Dr. Bukowski says—just seven years before Terence and I met him—“we thought that all cases of kidney cancer were alike. They were all treated the same.” Dr. Bukowski and I talk now in 2009 about how kidney cancer was treated back then—with interferon and the same interleukin-2 that Terence first secretly tried. Again, I am struck by how closely even Dr. Bukowski’s expert experience mirrors our own: If things felt murky and unclear and confusing to us, then that’s because they were.

And still, to a great extent, are.

Interleukin-2—IL-2—was first used in the early 1980s. “It’s been twenty-five years,” he says, “and we still don’t know how it works.”

What they were just beginning to understand when Terence and I first came to see him, Dr. Bukowski now says, was that the conventional treatment didn’t work very well—if at all—on the rare versions of kidney cancer like collecting duct or papillary. Dr. Bukowski doesn’t fault Dr. Pierce and Terence for turning to IL-2 in Lexington. After all, it had been the standard of care since it was approved by the FDA in 1992.

By the time Terence was diagnosed in 2001, Dr. Bukowski now says, the information was just beginning to filter out revealing that with Terence’s odd cancer—whether papillary or collecting duct—there most likely was zero chance that the painful and awful experience of taking IL-2 would have done him any good at all.

So what about our decision to do nothing, I ask now. Do you still think that was a good choice?

Yes, says Dr. Bukowski. I hear in his voice the same clarity Terence and I together heard back then. And yet as he reviews the confusing state of knowledge back in late 2002 I can see some of the ambivalence that must lie behind the adamantine certainty.

Collecting duct cancer is so different that some doctors even believe it isn’t kidney cancer at all—even though it’s located in the kidney, he explains. Even papillary cancer—the one Dr. Bukowski still believes Terence had—is so different that few people understand how it behaves. The confusing mass of trial-and-error discovery that I sensed from my forays into the Internet and into the kidney cancer forums was just as real for Dr. Bukowski as it was for us. There was an explosion of research taking place behind the scenes, but nearly all of the new drugs were only known to target the garden-variety clear cell type of cancer that makes up more than 80 percent of the cases.

“You are left with a conundrum,” he says. “Do you delay and hope that something will come on the scene? In a patient with a slow-growing cancer, no treatment may be the best treatment.”

So
did
Terence have collecting duct cancer?

No, says Dr. Bukowski.

The cancer didn’t act like collecting duct, he says. It didn’t look
like collecting duct. So why did so many expert pathologists think it was?

His answer would sound condescending if the opinion wasn’t shared by the pathologists themselves: “A group of leading experts in kidney cancer pathology will not infrequently disagree,” he says. He even pulls a card from his sleeve: Back then, he had consulted yet another pathologist at Sloan-Kettering in New York, a leading cancer center, who agreed with Dr. Bukowski that Terence did not have collecting duct.

Dr. Gown in his Seattle pathology lab is unmoved. He looks over his work from 2001 and still concludes he was right. So, I ask Dr. Gown, why didn’t Terence’s tumor behave like collecting duct? Why did it grow so slowly, when most collecting duct is ferocious in its speed and proliferation?

Dr. Gown shrugs. “Some tumors don’t read the book,” he says.

So what’s the box score on the tumor?

Six pathologists. At least four hospitals. MD Anderson. The Cleveland Clinic. Sloan-Kettering. PhenoPath. Three oncologists. The outcome? Nearly four years after his death, I still don’t know what kind of cancer Terence had. Everyone is convinced he is right. Yet, for all our education and experience and the $2.7 billion health care industry that cradles us, we are collectively brought to our knees by Terence’s wayward cells.

So why—with all the research I did and the options I found and the insurance payments for drugs I got approved—did Terence and I agree to do nothing?

I’m not sure I know, even today.

I think we trusted Dr. Bukowski. I think that’s the reason we did a lot of things we did. For all our research, it wasn’t really the science we were following. It was the people. We took the measure of people we trusted and then followed the path they led us on.

In the spring of 2003 we are awash in family and friends. My mother and father visit from New Jersey. Georgia’s godparents drive up from Atlanta. Terence’s old army buddy Woody Boyd comes in from D.C.

And Terence’s younger brother roars in from Detroit on his motorcycle.

Younger brother?

A brother for Terence, who grew up in Cincinnati as an only child? Yes, at age sixty-two, Terence is now, much to our surprise, part of a large, far-flung, yet close-knit family. One he didn’t even know existed till he was over fifty.

In between our visits to Dr. Bukowski, our life has taken on a pleasingly normal rhythm. Christmas of 2002 comes and goes in our Lexington home. A ceiling-scraping tree sits properly in the front window, its hundreds of lights shining right there for passersby to admire. Most of the 150 people from our newsroom crowd into our house with their families, bearing sugar cookies decorated with Red Hots and tooth-destroying silver pellets, gingerbread men, and rum balls. The copy-desk chief sits at the piano. People sing. Everyone pushes into the living room for his specialty, a hilarious three-minute pastiche of every Christmas carol ever written. On Christmas morning, fourteen-year-old Terry gets a new snare drum and cymbals, Zildjian—the best there is. Georgia, now eight, gets a bike with pink streamers. The world keeps on turning.

As the winter of 2002–2003 edges toward spring, the inexorable post–9/11 march toward Baghdad is picking up steam. No one has found the weapons of mass destruction that they are expecting; everyone keeps asserting they are there. I don’t believe it. Terence doesn’t believe it. The invasion seems more and more inevitable. Terence is Terence. He flies a flag from our front porch. He reaches out to veterans’ groups. He supports my decision to oppose the war. Our paper’s editorial board concludes that the evidence does not support an invasion. Don’t do it, Mr. President. You have not made your case, we say. We are one of the few papers in the country to write that. My voice mail and email box fill with hateful calls and notes. Other people stop by the building to urge us to do more.

For two weeks in March I sleep in front of the television set. We await the bombing. It will come any day now; if it happens before a certain time, we will stop the presses. When the invasion finally happens, two young men from our staff are there with the troops. One of them, a reporter, is burned by a mysterious chemical. Are these the chemical weapons we are seeking? Another, a photographer, rides into Baghdad in a tank full of soldiers. Every night when I hear from them, I call their moms.

The war wends on. Saddam Hussein’s statue is dragged to the ground. There are suicide bombers in Chechnya. Terry learns new Green Day and Blink-182 music. Georgia and her best friend, Bailey, spend most of their waking hours together at Bailey’s house, and many nights too. Bailey has a French provincial bedroom, her own bathroom with a large claw-foot tub, and a swimming pool in her backyard. Is it any wonder her home is the playroom of choice? The human genome project is completed. SARS breaks out. Scientists clone a horse, a deer. A gynecologist in a strip mall on the edge of Lexington claims to be cloning a human in an undisclosed European location. We write to debunk his claims. He sues the newspaper.

Terence is teaching and beginning a new project. He wants to start a schoolhouse museum. He prowls the region looking for old schoolhouse items. Our garage swells with initial-carved desks, both tan and dark brown, with hinged lids covering book wells and with cubbies under the seats. He finds fifty-year-old chalkboards, seventy-five-year-old globes. He collects pointers and easels and coal scuttles from one-room schoolhouses. Our cars, once again, are exiled to the driveway. I grouse. When he spots a garage sale Terry and I groan and shout. Only Georgia is enthusiastic. She knows there is costume jewelry in it for her.

It has been nearly fourteen years since Terence and I discovered his lost family. When Terence became a father for the first time at age forty-eight, he began thinking about his own dad, whom he had never met. Increasingly, Terence got an itch to try to find him. In those pre-Internet, pre-Google days, it wasn’t all that easy. His mother was dead. The cousins he grew up with are all from her side of the family. They are younger than Terence and they know very little. That left phone books.

Just after Terry’s birth in 1988, while we were still living in New York, we spent weekends at the New York Public Library, systematically working through a book at a time, taking the numbers with us to telephone from home.

Whenever we traveled in those days, our first task was to find the phone book and flip to the L’s. Nearly a year passed without any luck. Finally my mother, a skilled genealogist, called with a tip, picked up from one of her mysterious sources.

“Try California,” she said.

Luckily Terence’s dad’s name—Laudeman—isn’t all that common. There were dozens, not hundreds, to search. Terence began at the north and worked his way down, a couple of names a night, leaving messages or talking to strangers.

Finally, late one night, the phone rang. A wary voice on the other end said he was responding to a message left days earlier. Terence took the phone in the bedroom. He emerged a few minutes later.

“I found him,” he said.

As it happened, I was already booked to leave for a business trip to California. We hurriedly bought two more tickets, one for him and one for the year-old Terry. We set off. While I spent days at a conference listening to the drone of economists impressing one another with erudition, Terence took little Terry riding on the cable cars where he once worked. Perhaps they rode the very same cable car! We marveled at the possibility.

When Sunday arrived, we set out driving, following telephoned directions. After about an hour, we pulled into a trailer park.

It is here that I learn how Terence inherited his dramatic flair, and his mania for secrecy. There is the old man, barely five feet five inches tall, standing outside a white double-wide. He is flanked by two middle-aged men wearing blankly wary looks. Just an hour earlier, it turns out, he has summoned the two sons to the house and—just minutes before we arrived—told them his fifty-year-old secret.

“Meet your brother,” he says.

If this were a made-for-TV movie, what would happen next? Perhaps a flashback to a romantic scene or two between Terence’s parents as teenage lovers. A heartrending moment of anguish with the woman who is now Dad’s wife, as she learns the secret for the first time. At the half-hour mark, the younger sons confront their dad. At forty-five minutes Terence and his dad bare their souls to each other, and Terence will confess his pain at his dad’s abandonment. By the finale enduring love will triumph over hurt and betrayal.