The Cost of Hope (12 page)

I remember him screaming at his boss; I had forgotten his invective at mine. “She can’t talk to you like that!” he rages. “You’re twice as smart as she is!” His anger makes me believe, for a moment, in my own strength.

I remember days in New York when, indignant at his strong views and his refusal to yield, I slam doors. Yet tonight my memory retrieves a different, long-buried moment: It is afternoon in
the city and we are walking down Broadway when, without warning, he hip-checks me into an open doorway and I fall. I look up in fury just in time to see three figures, guns drawn, charge past. Terence is standing between me and them. He is bossy. He is pushy. Without a second thought, he puts himself between me and danger.

As night turns to morning, I realize more clearly than ever before how much over the years I have come to see myself through his eyes. The moves I would not have made. The chances I would not have taken. I leave a job that has been my home since college. I pack up our house not once but three times. Sometimes he infuriates me with his insistence that I can do the things I fear doing. He never backs down.

Tonight as he lies upstairs, the memory of our early trip to Florida resurfaces. Only this time, in the light of the electric shock of my fear, I see something I have long forgotten about the alarming, crazed would-be helicopter pilot I married. My memory refocuses, this time not on him but on me.

There I am. I am sitting in the open door of a Cessna. I am wearing a yellow helmet and red sweatshirt. A smile freezes on my face. Behind the smile is pure terror. While Terence is pursuing his quixotic quest to get a pilot’s license in four days, I head off for my own adventure.

As soon as I sign up at a nearby skydiving school, I regret my impulsive choice. I am afraid of flying, so the whole endeavor is weirdly masochistic. I want to quit but I am too proud to back down. After a half day of training, the instructor straps me into the chute. I am almost sick with fear. We prepare to taxi. I think I may faint.

As I look out the door of the plane, suddenly he is there. I don’t know when he arrived, or how he has found me, but there he is, in his burgundy windbreaker and newsboy cap. He looks at me in a way that I have never seen before, from anyone. I see pride. Deep,
unadulterated, unabashed pride. He knows I am terrified. He knows I am going to go through with it anyway. And he is proud of me. He snaps a photo. He waves.

As we climb over the same blue and green landscape he navigated the day before, I think: I am doing something new. Something brave. Something fun.

I am flying.

I step out the door of the plane into the wind. I hold on to the wing above my head and brace my feet on a tiny ledge. I throw myself backward into the air. Suddenly, everything is still and quiet, and I am hanging from the sky. He is there when I land.

Alone in the dark sixteen years later, I realize for the first time that this crazy man doesn’t just believe he can fly.

He believes that I can too.

I resolve two things that night.

The first is that I will never let another day go by without telling him how much I love him, and how much he means to me and the children.

The second is that I cannot let this happen.

I cannot just let him die.

Two days later, on May 8, 2002, I accompany Terence to his next visit with Dr. Scott Pierce, the oncologist who has been secretly treating him.

Dr. Pierce is a general oncologist, the kind you find all over the country on the front line of everyone’s everyday cancers. He sees breast cancer and colon cancer and skin cancer and leukemia. He administers chemotherapy and radiation and advice and comfort. I flinch at the sight of the sick people in the waiting room, the turbaned women and men with canes and walkers.

A nurse calls us to an examining room. After a few minutes, Dr. Pierce opens the door. He spots us both sitting there.

He raises his eyebrows. “So you told her?”

Terence nods.

I have a fistful of printouts. Names of doctors. Names of hospitals. Names of drugs and descriptions of clinical trials. I thrust them at Dr. Pierce.

He looks over at Terence.

“This is who you were protecting?” he asks.

Terence looks sheepish. He shrugs.

“Guy’s a head case,” I say.

Dr. Pierce looks at Terence again.

Terence shrugs again.

“She may save your life,” Dr. Pierce says.

• • •

For the next six weeks, Terence continues his treatments. As he and Dr. Pierce have agreed, he gets daily injections of interleukin-2, a type of hormone that stimulates the body’s immune response to fight off invaders like cancer. For reasons no one seems to understand, the chemotherapy used to blast many other kinds of cancers has little effect on kidney cancer. Interleukin is naturally found in the body and helps fight infections; sometimes it even has to be suppressed—for example, when a patient is undergoing a transplant. About a decade before Terence met Dr. Pierce, the FDA approved the synthetic form of IL-2 to treat kidney cancer and melanoma. In some cases, for reasons no one completely understands, the injections can cause the body to rise up and beat back the tumors.

There are two ways to administer IL-2. Patients choosing the high-dose method are confined to intensive care wards and given intravenous drips every eight hours. This method has some real promise: In one study, 7 percent of those undergoing this treatment had their cancer disappear, at least for a while. I read further, though, and realize that this is a game of Russian roulette. Four percent of the patients in the same study died from the side effects of the treatment. One hundred chambers in the gun. In seven chambers, something resembling a cure. In four, live ammo. No one knows who will get which. Point the gun at your temple, and fire.

The low-dose version—the kind Terence is doing—involves a shot every day. Same drug, lower intensity. The side effects, although less dangerous, are the same. Fever. Chills. Shaking. Diarrhea. Nausea. Vomiting. It’s like suffering a violent flu and malaria at the same time. But even low-dose IL-2 apparently offers some promise: 15 percent of those taking it will respond, the brochure says.

Terence begins going to the office at Bob-O-Link Drive first thing in the morning, to get the shot over with before he goes to
work. But we quickly realize that the terrible symptoms begin about six hours after the injection. If he gets the shot at 9:00 a.m., then by midafternoon he needs to be helped home from the office. We switch the appointment from first thing in the morning to last thing in the afternoon. If he gets the shot at 3:00 p.m., he can make it through dinner before the shaking begins.

It is not enough. The Asia Center is in frenetic start-up mode. Terence struggles to get himself to work as often as he can. But on some days at 3:00 p.m., he is felled by the shaking. On other days, he must leave the office early for the shots. On many days, even the best days, he falls asleep sitting up, the victim of sleep lost to chills, fever, and vomiting. Reluctantly, he resigns. His job at the Asia Center thus becomes the first casualty of his illness, and of our quest for a cure. He never works full time again. He is sixty-one years old.

Later that week, I visit a therapist.

“I can’t survive without him,” I say.

“What does he say when you feel this way?” she asks.

“He says I can handle anything.”

“You’ll need to say that to yourself from now on.”

Alone with Dr. Pierce, Terence had just learned he was going to die. Perhaps soon.

What was that moment like?

Seven and a half years after he and Terence met I fly back to Lexington to visit Dr. Pierce. He has moved from his office on Bob-O-Link and now has a much smaller practice, his office looking out over a parking lot. He sees me in his office after 6:00 p.m., when all his patients have left. He still has a couple of hours of dictation left to go. He will return to his wife and children after eight, as he does on most days.

Dr. Pierce remembers Terence well.

“I can still see him,” he says. He wore a trench coat. He wore a fedora. “He was a very interesting man.”

During the clandestine meetings back then, before Terence let me in on the secret, they discussed Terence’s options. Dr. Pierce explained the odds—that the average length of survival after a kidney cancer metastasis is six to nine months. Terence’s reaction surprised him.

“The first thing he said was: ‘Doc, do you have any female patients who have recently died? I need to find a widower so my wife can meet her next husband,’ ” Dr. Pierce recalls. “I’ve never had anybody say anything like that before.”

It doesn’t surprise me that Dr. Pierce has never before had a patient ask a question like that. Nor does it surprise me now that Terence asked it. Having looked after him for all those years, I now know for certain why the first thing he would think about would be to look after me.

Throughout the summer of 2002, after Terence and I leave Dr. Pierce’s office, I research interleukin-2 as thoroughly as I know how. I discover the Cytokine Research Group. I look up papers in obscure journals. Scientific papers compare high-dose interleukin to low-dose. They compare interleukin to interferon, a similar protein. They compare interleukin to nothing. They are nerdy publications—important to the progress of science, I am sure, but maddeningly useless to me. They compare drug pathways, molecular structures. There are papers that I think of as the “Lourdes reports” that describe unexplained cases of spontaneous remission following some unlikely treatment.

There are papers whose titles I can’t even fathom, like one from the
International Journal of Clinical Oncology
, published five years before Terence’s diagnosis:

Or one from the
Annals of Surgical Oncology
in 1994:

What do these mean? What can I learn from them? My head spins. Making it even more confusing, almost all the papers have
studied the most common version of kidney cancer—clear cell cancer. There are almost no references anywhere to the rare and mysterious collecting duct cancer, so we really have no reason to know one way or another if anything will work on Terence.

Still, some of the papers I download seem encouraging. They talk about “response rates” and they seem to be saying the same thing that Dr. Pierce and the drug’s maker are saying. Some studies say the “response rate” for IL-2 in kidney cancer is 8 percent. Some say 15 percent. Some go as high as 23 percent. There are weird abbreviations. CR. OR. PR. DR.

After a bit I tease out the code: Complete response. Objective response. Partial response. Durable response. All good. These various categories are measuring whether the tumor reacts to the therapy. Does the tumor shrink? Vanish? If so, for how long?

The more I read, though, the more puzzled I become. I understand that having the tumor shrink is a good thing. Perhaps a very good thing. But what I care about is not Terence’s tumor. It is Terence. I want to know if anything is going to make him live longer.

And so I scour the papers one more time for answers to the question I have most on my mind: So how long do these people live? If they take the IL-2 and the tumor shrinks, do they live longer? If so, how much longer?

The papers are mysteriously vague.

I find one paper from 1993 that suggests evidence, but not proof, of longer survival. (“How long?
HOW LONG?
” Frustrated, I begin shouting at the papers themselves.) I am not a skilled scientific researcher. The terms confuse me.

Instinctively, I understand that it is easier and faster to measure the way the tumor responds—a scan every three months can provide a comparison, while survival is so much more complicated to figure out. Yet I am sure I must be missing something. Isn’t survival
the point? Why will none of these papers tell me how much longer this treatment will make my husband live?

It isn’t until I go looking again nine years after our meeting in Dr. Pierce’s office that I find references to studies sharing my frustration. I find a Canadian group that tabulates fifty-three studies totaling 6,114 patients and concludes that tumor response doesn’t correlate very well with survival at all in kidney cancer patients. Did we suspect that even back then? I have no idea.

Now, in the fall of 2009, I sit across the desk from Dr. Pierce. I want to know: Why IL-2? Why did you and Terence make the choices you did?

Dr. Pierce’s simple answer: That’s all we had.

There are two kinds of patients who come to him, he explains. One kind wants to be left alone, to know as little as possible, to be confronted by as little as possible, to do as little as possible. This might be someone who is old, who is already at the end of a long life. Someone fearful. Or, very likely, someone in tremendous pain from an advanced case.

Terence is none of these people. He is only three-quarters through the life he expected. He is still relatively healthy otherwise. He is not in pain. He has a young family. He wants Dr. Pierce to fix him. In this, Dr. Pierce says, he is like most people.

“I know that he wanted to get better. Who wouldn’t?” Dr. Pierce says. “He would have been willing to do anything. I think most of us would be that way. He may have been a unique human, but he shared the emotions of most. It’s strange the hell people will go through to keep living,” he says. If not for themselves, they “maybe live for their wife, or children or grandchildren.”

Before interleukin-2 was approved in 1992 to treat kidney cancer, Dr. Pierce had nothing to offer. With interleukin there was at least a chance. Dr. Pierce, and Terence, both know it was a slim chance. It was a chance nonetheless.

In fact, for Dr. Pierce, the pain of the job comes from just how empty his hands often are.

People like Terence—and me—“want you to come up with anything possible. I will run out of ideas and they’ll still be standing there looking at me, saying, ‘What can you do for me?’ ”