The Cost of Hope (8 page)

The operation on Thursday, January 18, to remove Terence’s kidney is long—more than five hours, according to the bill for the operating room. I have become a connoisseur of waiting rooms. Providence Portland, in downtown Portland, seems older and dingier than its sleek Providence St. Vincent cousin off in the suburbs. I see a woman crying off in one corner. Young adults who
appear to be her children huddle around her comforting her. I wonder what news she has just received. The cafeteria is not as plush as the one across town. The coffee doesn’t seem as good.

Dr. Turner emerges flushed and triumphant from the operating room, and I am summoned to a tiny consultation cubicle. He is still dressed in scrubs. The operation has been a success, he says. He has removed the diseased kidney, and has done so laparoscopically, through a tiny hole in Terence’s abdomen. His recovery will be much faster and much less painful than it might otherwise have been, Dr. Turner says. He has sent the tumor off to the lab—he calls it a tumor this time—for looking at it up close, it appears almost certainly to be cancer. An hour or so later, I am allowed in the recovery room. Terence is lying under the bright lights. “You are going to be fine,” I tell him. He is too drugged and groggy to register what I am saying. “Everything is going to be fine.”

Dr. Turner is right. The operation is physically less taxing than his earlier one; Terence is released from the hospital just three days later; on January 25, just a week after surgery, Terence is well enough to be brought into the doctor’s office. At his visit, Dr. Turner tells us that the cancer is an odd type. “Of unknown origin,” he says. He tells us that he’ll call just as soon as he knows more.

Still, he is reassuring.

“We got it all,” he says.

Terence tears up.

“Thank you for saving my life,” he says. They shake hands. Terence never sees him again.

My memory is clear on just how much Terence and I had riding on that operation. Until I track Dr. Turner down again, I have no idea what it had meant to him as a young doctor.

Twelve days shy of a decade after the operation and three years after Terence died, I fly out to meet Dr. Turner in Oregon. I have faxed him the pages of his notes and records. When he calls back, he is excited. He remembers Terence. He remembers us both. He remembers Terence’s kidney. He’s done hundreds of operations since that day, yet he remembers this one very clearly.

What I want to know from Dr. Turner is this: Was Terence’s thank-you for saving his life misguided? Was it the romantic and wishful sentiment of a frightened and deluded couple? How badly were we mistaken at the time, in thinking that the operation had “cured” Terence’s cancer? Had Dr. Turner been sending out some other, more subtle message that we had—willfully or accidentally—failed to hear?

Not at all, Dr. Turner says. In fact, he is surprised to hear that Terence has died. The literature on kidney cancer is very clear. On average, he reiterates, if a small tumor is removed before the cancer has had a chance to fling its microscopic cells into the bloodstream and implant other places, then surgery can be considered as close to a cure as possible. At 7 centimeters, Terence’s tumor was just on the edge.

I also learn from Dr. Turner just what an opportunity Terence presented him at that moment in his surgical career. Terence was
very ill. His insides were still roiling from the intestinal surgery just two weeks earlier. Another major surgery would be debilitating. I remember how Dr. Turner explained to us that he would try to remove the kidney through a small hole, to spare Terence the pain and weeks-long recovery of a cut. It was a relatively new technique, he says.

Had I known just how new the surgery was and how new Dr. Turner was to it, my waiting room time would have been completely different. As it is, it isn’t until I look over the medical records I have collected that I realize I have no idea how we even got to Dr. Turner in the first place. A polite note in the file from Dr. Turner thanking Dr. David Luallin for the referral is the only clue. Dr. Luallin is the surgeon who removed Terence’s colon. But how did we get to Dr. Luallin? I honestly don’t know. Perhaps Terence knew. I doubt it. What a level of blind trust we had! We did more research before picking out our real estate agent.

What Terence and I didn’t know was that Dr. Turner was new to Oregon. He had just arrived six months earlier, in July. He was also pretty new to surgery, having just finished his residency at University of Chicago. He’d done fewer than twenty such surgeries himself. And he was eager to make his mark. As a resident, he had been working with other doctors on what they called “minimally invasive surgery” back in Chicago, mainly working with living kidney donors. “I drove the camera,” he says. But hardly anyone had been doing this kind of surgery for something as big as a kidney here in Oregon at that time. Dr. Turner really wanted to do it. “I wanted to do something cool,” he tells me now. “I wanted to be out there pushing the envelope. I wanted to be the guy. That was common for us early surgeons.”

I can’t say I’ve ever thought of surgery as “cool,” but listening to the excitement in his voice as he recalls operating on my husband almost convinces me. I hear in his voice the same confidence that we saw on his face those many years ago. A kind of professional
pride that I can admire. An intellectual curiosity and taste for adventure that I know Terence could have related to—if he could somehow have gotten past the idea that these are HIS guts, and this is HIS life.

Dr. Turner now tells me that Terence’s surgery would be by far the most complex he had done. “This was a chance to do something innovative again,” Dr. Turner recalls. “It was a great challenge for me to step toward. It was a cool surgery, and the benefit of the extra work was going to be huge.” Of course, he adds, in a phrase I am comfortable hearing only at the distance of years, “I was still developing the technique on how I was going to apply it.”

I now think Terence would be excited to know how he helped advance the technique. I am glad neither of us knew at the time.

Dr. Turner tells me something else that I am glad Terence and I didn’t know back then: He had met many of the people working with him in the operating room that day for the very first time. And that wasn’t unusual. As a surgeon, he has his own company. He doesn’t work for the hospital. And when he comes to do surgeries he, like other surgeons, doesn’t get to pick his own team. The scrub nurses, the attendants, even the anesthesiologists are all assembled anew for each operation.

I know that professionals can come together and work effectively bound by nothing more than their years of common experience. I watch Terence’s pickup Dixieland bands perform in just that way. Would I have been happy to know that Terence’s complicated surgery was being handled, not by an experienced and well-rehearsed team, but by people who didn’t know one another? I think not.

In any case, Dr. Turner says, although tempers can sometimes run high when these professionals’ work styles clash, nothing of the sort happened during Terence’s surgery. It all went smoothly and well.

The Blue Cross records I’ve gathered show that the bills for
that feat were relatively modest—just over $25,000. Most of that is for the hospital—$1,944 for the room; $124 a day for oxygen; $10,000 for the use of the operating room. Dr. Turner bills $2,590.

As I begin to think about all that we have done and all that we—or someone—has spent to keep Terence alive, a test keeps popping into my head: Would you have paid for this if it had been your own money? That sum—$25,000—is more than half the cost of this year’s college tuition for Terry. It’s just about what my sister spent to turn her back porch into a comfortable family room. I have a friend who spent twice that for a new kitchen. Would I spend $25,000 for a shot at keeping Terence alive for five years? Damn straight. As it turns out, we paid $209.87. The rest was covered by insurance—in reality by my employer, who footed the bill.

Looking back, I find it astounding how little we knew both about the surgery itself, and about how much it cost.

Instead, our focus was on the bullet we dodged. Terence and I went home to sleep it all off.

I return to work at
The Oregonian
. When Dr. Turner calls again, his voice is still upbeat, but his message is not. Terence does not just have an ordinary kidney cancer. He has an extremely rare form of kidney cancer called collecting duct carcinoma. Dr. Turner tells us that he is still optimistic, but we should probably look into this.

In my tiny office at one end of the newsroom, looking out over Southwest Broadway, I tilt my computer screen discreetly away from the door. I am an editor. My fingers can be moving on the keys and I can seem to be working on some story. In reality, I am deep in the Internet.

Kidney cancer is a tiny subset of all cancers. As I click away, I learn from the Kidney Cancer Association website that no one really knows what causes kidney cancer. In terms of who gets it, though, Terence might as well have had a bull’s-eye painted on him. Male? Check. One hundred sixty men will get it for every hundred women. Older? Check. He’s sixty years old, exactly the average. Overweight? Check to that too, despite both of our best efforts. Smoker? He and I both quit in the mid-1980s, in preparation for Terry’s arrival. That is more than fifteen years ago, but it still leaves thirty years of puffing in his past.

In one regard we seem to be lucky. Like many cancers, kidney cancer can just cruise along silently, not causing anyone any trouble, until it suddenly starts causing a lot of trouble, and it’s too late. Bleeding. Lumps. Pain. The symptoms that suggest the tumor has broken through its own shell and is invading the body. Terence has
none of that. Like about a third of his fellows, he is fortunate enough to discover the cancer while we are looking for something else. For kidney cancer in general, Dr. Turner is right—the signs do seem encouraging. The cancer hasn’t spread. That is the key. I look at one site and then another. I do the calculations once and then all over again. It always comes out the same. A sixty-year-old man with a 7-centimeter kidney tumor that hasn’t spread anywhere else has more than a 90 percent chance of making it for five years. Five years is as far as they are willing to project. That seems like forever. I’ll take it.

But collecting duct cancer? That’s a different story. I have to go deep into the Internet to find anything at all. I scour every site I can find. I can find only about fifty cases anywhere in the literature. Fifty. That’s 0.00000667 percent of all the cancers in the world. I download research papers. The biggest study I can find is from Japan, involving only a dozen or so people. Almost all the other reports are of individual cases, and all come to the same conclusion: an aggressive tumor with poor prognosis. I search on the authors’ names. I search on the university names. In the lulls between stories, I call everyone whose name I can find on a paper or a study. I’m a journalist. I call people. That’s what I do.

Most of the people I reach are just pure researchers and, while they are kindly and sympathetic, they know nothing about the actual disease or how it could be treated. The oncologists I call have either never even heard of the cancer or at most have heard anecdotally of a case or two. The same words keep popping up over and over in the studies: Rare. Aggressive. Most of the patients in the papers are dead within a few months of diagnosis.

I wander out of my office feeling dazed after hours of research. My next-door neighbor is another editor, Jack Hart. He’s famous around the country for teaching storytelling techniques to journalists.
He’s also a man of precise habits and Teutonic bearing. He has a decidedly unjournalistic discipline. My stories flap loosely and wildly to a deadline crash landing. His stories march tightly to an early finish and are laid out days ahead of time. My team pulls caffeinated all-nighters to finish. His team goes home to dinner. He walks with his shoulders squared. His desk is paper free. Looking at his computer screen once, I thought his email was broken, till I realized I was seeing something I had never seen before: an empty inbox. He deals with his correspondence immediately and then deletes it.

With my head full of the research I have just done, I wander aimlessly into his tidy office intending to ask some trivial question on a story we are both involved in.

“How’s it going?” he asks.

I have held it together for my children. I have held it together for Terence. I have held it together for my sister, my parents, the doctors, our friends. Suddenly I am sobbing so hard I can barely stand up. The thought that I have held at bay floods me: What if Terence does not get better? Jack kicks the door shut with his foot and holds me until I cry myself out.

Ten years later, I discover how Dr. Turner arrived at his diagnosis. In the documents I have collected after Terence’s death I see the signature of Dr. P. Holbrook Howard on a January 23, 2001, lab report. I have never heard of Dr. Howard. Terence died without ever thinking about him, or knowing the role he played in our lives or Terence’s illness. Nor did Dr. Howard know my name, nor did he know how Terence lived or that he died, or that Terry and Georgia are about the same ages as Caitlin, Chelsea, and Madeleine, his three daughters.

Yet in 2001 Dr. Howard peered deeper into Terence’s cancer than anyone else and signed off on a terse, three-paragraph message
that lay behind Dr. Turner’s meeting with us, and that informed, educated, directed, illuminated—and confounded—all of us for the rest of Terence’s life.

No one was keeping Dr. Howard a secret back then. It’s just that no one thought to mention him. Dr. Howard was the pathologist at Providence Portland who first identified Terence’s cancer for what it was. Why would anyone have mentioned him to us? Looking over the records I realize that there are hundreds—maybe even thousands—of similarly anonymous people who touched our lives.

As, a decade later, I examine the notes of our final visit with Dr. Turner, the surgeon, on January 25, 2001, I realize that he was reading from Dr. Howard’s pathology report—and that the picture was more complicated than it first appeared. Dr. Howard speaks on the page in a language that to Terence and me might as well have been Greek. After Dr. Turner called with the words “collecting duct,” I remember that Terence and I futilely pored over these words for clues: