The Cost of Hope (17 page)

“Daddy.”

“Mommy.”

Each time we revisit the story it is the same. Each time the children demand to know the truth. They stamp their feet. Who did it? Who locked the keys in the car?

Daddy.

Mommy.

Terence is long gone, and Terry is well past drinking age when something dawns on him.

“I was so mad at both of you. I thought you were messing with us because we were kids,” he says. “I just realized now that you both actually BELIEVED it.”

“It was Daddy,” I say.

Meanwhile, just because we aren’t doing anything to treat the cancer doesn’t mean we aren’t doing anything at all. Every three or four months we return to the Cleveland Clinic to see Dr. Bukowski and to make sure that the cancer is keeping quiet. While we live in Lexington we drive there. When we move to Philly, he flies. The medical records that I collect after his death give a stark, professional account of these punctuation marks in our lives.

July 21, 2003: Stable. November 10, 2003: Stable. March 11, 2004: Stable. August 30, 2004: Stable; see him in three months. January 31, 2005: Stable. March 21, 2005: Stable.

At each visit, Dr. Bukowski orders tests that will let us see what the cancer is up to. Sometimes there are whole body scans. Sometimes there are scans of his abdomen, or his lungs. There are blood tests and X-rays. Every three or four months we hold our breath while we wait for the news. Every three or four months we exhale when the news is good.

As I look back over the medical records from that time, I see that we are billed at least $4,500 for each trip to the Cleveland Clinic, including separate bills for scans, for Dr. Bukowski, and for the doctors who, behind the scenes, read the scans. The bills for our November 10 visit, copied from our UnitedHealthcare insurance statement, go like this:

Three years, eight visits, from $4,500 to more than $5,300 each. That’s more than $36,000 during a time when we are simply watching and waiting. I do not realize this until I look over the records, and I am sure Terence never does know. How do we spend $36,000 without thinking about it?

I am flustered and disorganized with bills, but I am a pretty good shopper. So is Terence. He grew up with lace tablecloths and fresh flowers and his mother’s twelve-place silver set that I use today and will someday give to Georgia. I grew up with secondhand furniture, buying groceries on credit at the neighborhood store, and going with my mother twice a week to the Laundromat on the hill with the family’s washing. Yet we both arrive at the same place: Both of us buy sensible things at good
prices after serious consideration. Yet we rack up $36,000 in charges without a thought.

When I shop for groceries I check my receipt to see if the two-for-one ShopRite special on yogurt has registered. Terence buys huge boxes of cereal at Sam’s Club. We shop carefully for shoes, for tires, for lightbulbs, lawn mowers, and toothpaste. It never occurs to us to shop for CAT scans.

Month in and month out, despite the reassuring news, it remains hard to do nothing when I have promised myself to do everything I can. So I do my best to keep the other half of the promise I made on that dark night in Lexington.

Every night as we sit down to dinner—the proper dinner he insists on with place mats and napkins and serving dishes, forks on the left, knives and spoons on the right—we hold hands and thank God that we are all together again. Every day, at least once a day—by cellphone, by email, in person, at breakfast, or just before bed—I tell Terence how much he means to me. How much he means to our family. How much I see and appreciate everything he does for us. I tell him how funny he is, and how smart. I tell him what a good dad he is, and what a good friend.

And every single day, I tell him just how much I love him.

And so we continue until December 19, 2005. Six days before Christmas, Terence returns from his visit with Dr. Bukowski with the news that his cancer has begun to grow again, and our long wait is over.

On December 19, 2005, everything changes.

From this moment on, the rhythms of our weeks will be punctuated by the pace of a clinical trial of an experimental cancer drug. We join forces with a doctor who is staking his whole life on believing that everything in the cancer world is about to be transformed, and that this drug is only the beginning.

After that, the days of our lives together are guided by Dr. Keith Flaherty—a doctor we have just met—and girded by sorafenib, a drug whose name neither Terence nor I can spell, and bevacizumab, a drug whose name neither of us can pronounce. Our calendar is linked with the calendar of the trial and our emotional ease rises and falls with the timing of the monthly scans that accompany the treatment.

Yet in many ways, nothing changes at all.

Today, as I review the records and the research, the stark reality of even the most optimistic outcome leaps out at me. Even the best chances were slim, I can see in retrospect. Yet back then, hard as I looked, I saw none of that. Terence and I believe in these drugs with a belief that is beyond belief. Partly as a result of our belief, for the next year and a half, these drugs buy us a normal life.

They buy us hope.

Our life is so normal, in fact, that I have trouble recalling much of what happened during this time. Yet today, to jog my memory of the sheer ordinariness of our days, I have only to pop into the
VCR one of the dozens of home videos Terence created. On March 26, 2010, two years, three months, and twelve days after his death, I summon the courage to pull a few home videos from the family room shelf, searching for the clues to help me remember.

On the tapes, hours and hours and hours of images unfold, scenes from our lives here in Philadelphia. Girls sit at the kitchen counter on high-backed chairs—Georgia, and her friends Alex, Taylor, Kaitlyn, all smiles and giggles. Our flower boxes fill and empty and then fill again. The flag goes up and the flag comes down. In Halloween costumes, Terry, Isaac, Ben, Maddy, Nico, and Suzie mug for the camera. Georgia shows off a school project. Terry steals a hug with Suzie. “Go away!” he shouts over his shoulder at the camera.

Georgia has a birthday party—perhaps my single proudest “good mom” moment. At our local discount store, I buy cases of chocolate syrup and whipped cream, and I stay up late making vats of Jell-O. Then I put the girls into bathing suits and turn them loose on one another. I hear Terence behind the camera warning the shrieking and sticky would-be attackers away from him as ropes of chocolate and chunks of Jell-O fly through the air.

Our house fills with friends. They make coffee in our kitchen. They twirl pasta. They drink wine and talk. Everywhere, there is food. Crumb cakes. Upside-down cakes. Party treats cover the tables. Pots simmer on the stove. Terence and I both wear aprons.

In one Christmas shot, we torment the children as they loop silver strands through the branches of the tree.

“Christmas in our new house!” I cry. “Where will we be next year?”

“Not next year,” Terence replies. “TWO more Christmases in this house. THEN we move.”

The children ignore us. I cover them with Christmas kisses. Then I vanish off the screen. “And here’s a kiss for the cameraman,” I hear myself saying. In the background, I hear a brass
quintet play “Joy to the World,” the minor chords and major chords interchanging seamlessly, the darkness and the light weaving in and out.

The dailiness of our lives.

That is what hope buys us.

The last report we get from the Cleveland Clinic on December 19, 2005, doesn’t sound all that ominous to us.

Terence has gone there as usual for his quarterly checkup and scan. All the report says is that the scan shows “further progression of a right upper lobe mass, but stability in numerous small lung lesions.” It sounds okay to me and to Terence, different certainly, but not that much different from any of the other reports we have received over the past four years.

But Dr. Bukowski sees something else. The cancer, indolent, sluggish, and lazy up till now, has begun to grow again. That is enough for Dr. Bukowski. With the same certainty with which he told us in 2002 to wait and do nothing, he now galvanizes us to action. Perhaps it is now time to investigate something more aggressive—some clinical trials and treatments closer to home. He tells us about Dr. Flaherty, who is beginning a promising study in Philadelphia. Our next stop, Dr. Bukowski tells us, should be Presbyterian Hospital, where Dr. Flaherty will explain to us what he hopes the clinical trial he is conducting will achieve.

Joining a clinical trial has been a focus of our obsession right from the beginning of Terence’s illness. For a cancer like his—with no really effective known treatment—it’s the only hope for most people. You can enter the lottery using the known treatments, as
Terence and Dr. Pierce secretly did, and take the chance that you will be one of the lucky ones mysteriously helped. Or—if that fails—you can enter a clinical trial. That’s a lottery with even longer odds. Yet this is perhaps part of the reason lotteries and horse racing and Internet gambling have such appeal. The promise of the big payoff overwhelms our judgment about our slim chances. Why shouldn’t we be the smart ones? Why shouldn’t we be the lucky ones? Why shouldn’t we push the bell curve? Why shouldn’t we escape fate?

To dive into the world of trials, though, is to dive into a pool writhing with serpents looking for diamonds. On Monday, April 25, 2011, ClinicalTrials.gov, the National Institutes of Health database of all such trials, lists 106,373 trials in 174 countries. There are 1,641 of them involving kidney cancer—and 678 of those are recruiting new subjects. That’s the same order of magnitude I remember from the years Terence and I were looking. There were—and still are—hundreds and hundreds and hundreds of trials, and no clear way of deciding which one to choose.

Long before we even found Dr. Bukowski, we began our search for clinical trials that might help Terence. Much of the chatter on the kidney cancer listserv back in 2001, 2002, and 2003 involved finding, evaluating, and handicapping the various clinical trials and trading information about the doctors running them. It was information about clinical trials that I clutched when I met Dr. Pierce, and he politely considered and followed up. It was sheets on clinical trials that I thrust at Dr. Bukowski at our first meeting and that he resolutely ignored.

So what did we consider over the years? On a white lined pad I recorded notes of the trials we were investigating. I scribbled place names: Memorial Sloan-Kettering. MD Anderson.

Roswell Park Cancer Institute. Where is that? Buffalo. Buffalo?

Fox Chase in Pennsylvania, from long before we have any idea
where Fox Chase—a suburb of Philadelphia—even is. The University of Alabama and University of California, San Francisco. Even one in Nebraska. Nebraska??

My notes show that the range of options we considered is staggering. Nonmyeloablative bone marrow transplant. I can’t even remember what that means anymore. I have to Google it: It’s a method of transplanting donor bone marrow cells that isn’t as toxic or dangerous to the patient as traditional ways. That part sounded good. But whose cells? His only blood relatives are his cousins and his newfound half siblings. We imagined the conversation: Hi there! We haven’t spoken for the past fifty years. Welcome to our lives. Can we have some stem cells? We did some more research. It didn’t sound promising enough to cross that bridge.

On the pad is a note to myself: “Chemo and irradiation. It improves the graft vs. tumor effect (check this) and the immune response to the tumor.” From the listserv we learned that Janice Dutcher—at Our Lady of Mercy Medical Center in the Bronx—was doing a trial of ABX-Epigenics. What’s that? Does the listserv even have that right? There was one trial of Iressa at Vanderbilt and another trial of thalidomide, the antinausea drug that created babies with flippers instead of arms and legs, being tested in combination with interferon. Fox Chase is doing CCI-779. Virginia Mason is doing Gleevec. Cleveland Clinic has a trial of Neovastat, made from shark’s cartilage. There’s one vaccine trial, and at MD Anderson a trial of SU5416, which inhibits the VEGF receptor. The names, places, drugs, concepts are dizzying. How do we choose? Whom do we trust?

I was obviously reaching for anything, and taking it seriously. In my notes, I see a confirmation number for MD Anderson—051102162016FIK—and a registration for an appointment for a scan in the hospital in Houston. There were the names of the nurse-practitioners all across the country—the only people who
actually take the time to talk with us about our options: Ann. Blanca. Julie. Jacqueline. Noel.

There were so many things to think about it made our heads hurt. The point of a clinical trial is to test—in people—how different drugs work. The trials aren’t designed for patients. They’re designed for science. Each design differs depending on the type of drug and the knowledge that the researcher is seeking. Some are logistically difficult. One—in a faraway state—required daily injections in a hospital for thirty days. We would have had to move there for at least a month. What about the children? Unless we thought this was a sure bet, that one seemed out. Some of them were testing a new drug against nothing at all. We didn’t want to do that. After all, if there was a chance that half of the participants were going to—without knowing it—get only a placebo, then that meant our already slim chances would be cut in half. Some of the studies were testing new drugs against the existing standard of care. One of these compared a new drug combination with interleukin-2. That meant there was a 50–50 chance Terence would wind up with another round of the IL-2 that made him so miserable in Lexington. No way we were going back to that.

Some of the trials—a lot of them, in fact—specifically excluded the odd cancers like papillary and collecting duct. Once we read deeply into the rules of some intriguing trials, we realized that the researchers were limiting their subjects to those 80 percent who had the common clear cell variety. Some of the trials—like ones for a vegan diet or for laetrile—appeared to be designed simply to rule out treatments that patients demand but that doctors didn’t think hold promise. And some, I learn much later, after Terence’s death, were known informally and privately as “throw the spaghetti against the wall” trials. During these years, a dawning recognition that the place of origin of a cancer—bladder, kidney, breast, colon—might be less important than the cancer’s genetic composition led researchers on flights of possibilities. If a
drug worked against colon cancer, let’s try it for breast cancer. If it worked for breast cancer, let’s try it for kidney cancer. That, weirdly enough, turns out to be one of the best options, for it was that almost random testing that led the doctor in Paris—almost accidentally—to discover how well the drug that would become Sutent worked on kidney cancer.