The Cost of Hope (14 page)

Or so the theory goes.

Without really understanding why, I sign Terence up for a trial of an antiangiogenesis agent, the idea being to stop the flow of blood to the cancer.

Deep, deep behind the scenes something else is happening that I won’t know about for another decade: A powerful antiangiogenesis agent called SU11248 (so named because it is the 11,248th compound tested) has been sent around the world. A doctor in France, throwing the same kind of hopeful spaghetti against the wall that I observed happening to my friends on the listserv, gives it to some kidney cancer patients, whose tumors begin shrinking. Somewhere, somehow out there people are pushing the bell curve.

The dean of the Internet discussion group, and the chief bell-curve pusher, a man named Steve Dunn, exhorts everyone to push the boundaries. Do not be afraid of the bell curve, he says. Do not be afraid of the median. He himself found his kidney cancer at the age of thirty-two, in 1989. He is still alive in 2003, fourteen years later.

On his personal website, he posts an article by Stephen Jay Gould, a Harvard biologist who was diagnosed with abdominal mesothelioma in 1982 and was told he had a median survival chance of eight months. He thinks: The median means half will die before eight months and half will die after. But HOW LONG AFTER? Nothing about that eight-month median says whether that “after” will be eight months and one day or eight months and thirty years. The small tail of the bell curve stretches out into the unknown future.

This is the part of Gould’s article that stuck me: “I saw no reason why I shouldn’t be in that small tail.” I see no reason why Terence shouldn’t be there, too.

As it turns out, Terence himself makes all my research irrelevant—for the moment at least.

He continues the interleukin-2 injections for seven weeks, bearing up under increasing fatigue, nausea, and fevers. Finally, he cannot stand it anymore. On June 26, 2002, he takes his last dose and quits.

I don’t blame him a bit. The side effects have been awful. What’s even more awful: The drug has had no effect whatsoever. The cancer is still growing.

Later, after his death, I will review the insurance records showing that each time he was treated with IL-2 from May 6, 2001, to June 14, 2001, it was billed at $735 a dose. Twenty-four shots, $735 a dose. $17,640.

No effect.

For the rest of the spring and summer of 2002, eight-year-old Georgia rides her bicycle up and down the shaded sidewalks of South Ashland Avenue. Terence returns, not quite to normal, but close. He begins to teach Chinese history at a nearby community college. He is exuberant about the music clanging up from the
back stairs. Thirteen-year-old Terry and his friends Shannon, Hughes, and Tanner form a band, Point Taken. Our basement becomes their headquarters. They practice with a fierce discipline and enter a battle of the bands. They come in last. They are nonetheless excited. They have competed against
high school
students!

“It’s my dream,” Terence says over and over again. “Someday we’re going to gig together.”

The truth is, we are both still shaken at Dr. Pierce’s news and the failure of the interleukin-2.

“What would you regret dying without having seen?” I ask Terence one evening. His mind must have been turning in the same direction as mine. He answers without hesitation.

“Pompeii.”

By October, the kids are well into the school year. Yet without a second thought we pull Terry from his eighth-grade class, Georgia out of third, and fly off to Italy to see the excavated remains of the city once buried under volcanic ash. We stay in a whitewashed bungalow, perched high up on a cliff on the Amalfi Coast. Terence and I drink espresso and look down over the cobalt sea to Capri. The tourists are gone. The farmers spread out white cloths and harvest their olives. We drive up the black-lipped cone of Vesuvius that blanketed the coastal city with lava and ash forty-six years after the death of Christ. We walk the stony streets. We poke into frescoed houses, taverns, and baths. We look at shops where busy people on their way home from work two millennia ago grabbed a meal. We sit for a while on the steps of the coliseum where humans pitted humans against other humans. The children giggle at the lewd drawings scratched into the walls and the statues seeming to struggle under the weight of oversized phalluses. Terence maps out every step. I pause near the Temple of Jupiter, taking an eerie comfort from the nearly two-thousand-year-old ash-preserved shapes of families huddled together, trying to ward off disaster.

Something terrible is about to happen,
and there is nothing you can do about it
.

Try to conjure that feeling.

An out-of-control truck speeds toward a child. A bridge jumper throws one leg over the rail. A train hurtles at 150 miles an hour toward a school bus stalled on the track.
And there is nothing you can do about it
.

The feeling comes to me in dreams. My babies are in the front seat of our careening car. I am in the back.
And I can’t get to the steering wheel or brakes
. Recently I had such a dream: Something terrible is happening to Georgia. I don’t know what it is. It is something awful. But I can’t move a limb to reach her, or even open my eyes to see her.
There’s nothing I can do
. My sister, who is a scientist, says it’s only an illusion, caused by waking up in the wrong order, while some of the brain is still locked in REM sleep.

It doesn’t change the feeling.

It’s how I feel for the next three and a half years. From August 2002 to December 2005, Terence and I do nothing—nothing—to treat his cancer.

Nothing.

We do nothing because a new doctor we have found—a kidney cancer expert at Cleveland Clinic—has told us to do nothing. We have sought out and chosen Dr. Ronald Bukowski ourselves. We trust Dr. Bukowski. We think his advice is right. Even today I think his advice was mostly right.

• • •

We met with Dr. Bukowski in August, before planning our trip to Italy. On Saturday, August 17, 2002, we packed up the Volvo wagon and drove from Lexington to the Cleveland Clinic where Dr. Bukowski, one of the world’s experts on kidney cancer, would tell us what to do next.

Both of us had grown to worship the Beatles, and we visited the Rock and Roll Hall of Fame in Cleveland, marveling at the display of John Lennon’s guitars and handwritten manuscripts. We made this a family trip, but really we were in Cleveland to see Dr. Bukowski. I was drawn to one exhibit in the museum—a passage by Yoko Ono describing a bicycle ride she and John and their son Sean take—and I thought: How ordinary their life together seems. In the middle of the room there was something else: Yoko had loaned to the exhibit the glasses John was wearing on the day he was shot. A matter-of-fact line from the exhibit caught me in the gut: After he died at St. Luke’s–Roosevelt in New York, they gave her his belongings in a
paper bag
. I think:
A PAPER BAG!

We haven’t abandoned Dr. Pierce in Lexington. The records I collect show that we will have several more appointments with him. Still, like most other family oncologists, Dr. Pierce doesn’t see very many kidney cancer patients a year and has never seen collecting duct before. Even Dr. Pierce agrees that Terence’s odd disease needs some expert attention.

As I search out the alternatives I am drawn to the famous cancer centers, but few seem to have any special interest in or experience with kidney cancer. Face down in the Internet, I begin scanning scientific papers for names. A few begin appearing over and over again. Dr. Ronald Bukowski is a professor of medicine, medical adviser to the kidney cancer association. He writes papers educating other doctors on kidney cancer. I see his name on studies going back to the 1980s. Clearly he is one of the world’s
experts on kidney cancer. When we visit him, we realize he is one of the experts on collecting duct as well: He sees six or seven cases a year, almost a flood! Now Terence is one of them.

The Cleveland Clinic waiting room is tan and calm and quiet. Within five minutes of checking in, Terence is called to the back, weighed, measured, and escorted to an examining room. At precisely our appointment time, Dr. Ronald Bukowski swings open the door. He is a stoutly compact man about Terence’s age. In another century, his build and full gray mustache might have evoked a prosperous merchant—a butcher, perhaps. In this role, as doctor, what we see in him is confidence. Even before he speaks, we can feel that he carries a certainty in his own judgment. Terence begins to explain that he has come here because he suffers from the rare collecting duct cancer.

“No you don’t,” Dr. Bukowski says.

We have been in his office for less than five minutes. The doctor’s matter-of-fact assurance startles us. We are confused.

What?

How does he know?

“You’re sitting here,” Dr. Bukowski says. “If you had collecting duct, you would be dead.”

Then he reminds us of what should have been obvious: Collecting duct is a very aggressive cancer. I was not wrong more than a year ago when I noticed that everyone in the studies I found died quickly. I figured Terence was lucky. Dr. Bukowski figures he doesn’t have what we thought.

Terence and I register the surprise in each other’s faces.

Can this be?

Dr. Bukowski sends us off with a list of instructions. More scans. A lung biopsy. More reviews of the pathology. We return to
Dr. Pierce with the news. His notes from that visit say that we are all going to “kind of start from scratch.”

By November 13, 2002, we have gathered all the “from scratch” information Dr. Bukowski requested. Terence and I return to his office in Cleveland. The clinic is the same cool, calm beige. Once again, we are called within minutes of our appointment. Once again, at exactly the prescribed time, Dr. Bukowski walks in. We have done the lung scan. The head scan. The needle biopsy of the tiny lung spots, which required an overnight hospital stay in Lexington. We sent Dr. Bukowski the nineteen slides that Dr. Howard prepared two years earlier at Providence Portland hospital in Oregon. I also, as usual, have my personal stash of research to thrust at him.

He wants none of it. He cuts right to the point. As he suspected, he says, Terence does not have collecting duct cancer. Instead, says Dr. Bukowski, he has another almost equally rare variant called papillary cancer. Collecting duct cancer is the most aggressive of kidney cancers. Papillary is the most “indolent,” he says—the slowest growing, the opposite of aggressive.

“I recommend you do nothing,” he says.

Both Terence and I begin to sputter. I begin to natter about the printouts I have in my bag. The experimental treatments, the clinical trials, the—

“I recommend you do nothing,” he repeats. There is that same certainty in his voice. With his words, the fast-growing cancer we fear is replaced by a tamer, slower-growing version of itself. We haven’t beaten the bell curve. We have switched places on it.

“I recommend you do nothing.”

And so that’s just what we do.

Yet doing nothing is not something I do well. As we were growing
up, my sister called me “the ant”—able to carry fifty times my body weight without complaint. Terence calls me “the Energizer bunny” and annoys me by following me around the house clapping imaginary cymbals as I hurl orders and lists and tasks. I do four things at once. Terence is constantly rebuking me for paying bills while I am watching movies or for loading the dishwasher when he is trying to talk. For years I have made Terry and Georgia crazy on Saturdays with my ideas and plans and excursions, until I finally realize that I am the only one in the family who sees these vast empty weekend hours as opportunities for accomplishment and self-improvement.

In the biblical story of Mary and Martha, it is Martha I identify with. Martha, who runs around setting the table, putting out the olives, making sure the dishes are clean and the wine and water jugs are filled and there is enough bread for everyone—while everyone else including her sister Mary just lolls around listening to Jesus. I know. I know. Jesus chastises her for bustling and praises Mary’s attention. But what does Jesus know? If Martha doesn’t do that stuff, then who will? Will he?

It has been only six months since I vowed to do everything I could to keep Terence alive. Now Dr. Bukowski is telling me that the best I can do is nothing.

In retrospect, perhaps we should not have been so surprised by Dr. Bukowski’s conclusion about Terence’s cancer.

Seven years after that visit, as I dive into the medical records, I find something that I don’t remember—if in fact I ever knew it in the first place.

In Terence’s medical files I find a letter dated April 9, 2001—more than a year and a half before the visit when Dr. Bukowski told us to “do nothing.” The letter is from a Dr. Patricia Troncoso, a pathologist at MD Anderson in Houston, to Dr. Turner, the
surgeon in Oregon who removed Terence’s kidney. The letter is terse. Only three short paragraphs long:

Papillary? It’s the same word Dr. Bukowski would use a year and a half later after all our “from scratch” testing. I don’t understand now how she came to the conclusion she did—I don’t even understand some of the words—but I do understand the implication: Behind the scenes, experts were arguing about just how fast Terence was going to die.

When I prowl through the files, I realize that back then even Dr. Turner was startled. In Terence’s medical files, Dr. Turner, the surgeon, expresses his surprise at the different diagnosis in a handwritten note addressed to Dr. Brook Howard, the pathologist at Providence Portland who first diagnosed the cancer as collecting duct. The note read: “Dr. Howard: Wow! What do you think? Craig Turner.”