“Are you out of your MIND? You think I’m having an AFFAIR? Are you CRAZY?” He spoke in super italics. “It’s the CHRISTMAS TREE, you dumb broad. The CHRISTMAS TREE!”
The Christmas tree?
“There’s no front window. This house faces BACKWARD. Where am I going to put the Christmas tree? You have to see the Christmas tree from the street. How am I going to live in this house?” His despair was palpable.
The mountain. The eagles. The decks. The sunset. The lights on the river. They all meant nothing. The picture of home in his head was all Jimmy Stewart and It’s a Wonderful Life. A bay window. A twinkling tree. A fireplace beyond.
“Don’t you know anything? The Christmas tree HAS TO go in the front window.”
Besides, he said, Alison is a dingbat.
Perhaps, I now reason nearly two years later, when he comes home from the hospital we can drive out to the bridge, look across the river and up at our house hanging off the ridge, and see our tree blazing down from a distance. Maybe it will feel like a front window on the world, and Daddy will be cheered.
Together the children and I try to figure out everything we can to make Daddy happy. Terry gets a fuzzy blanket. Georgia finds his slippers. The three of us go to the local animal shelter and pick out the softest, fluffiest, purringest kitten we can find. Terence has wanted a cat for years. Time now for me to give in. On Christmas morning, we put the yowling box under the tree.
Perhaps we are lulled for a time by the gentle terminology the doctors use before they know for sure what they are seeing. When my dad was diagnosed with colon cancer four years earlier, the doctors carefully explained about the “lesion.” Although he dutifully went to every appointment and every scan, my mother later reported that it was weeks before my Harvard-educated mathematician father even realized that “lesion” meant cancer, and that he had it.
Terence and I are the same. It is hard for us to get too worked up about a “shadow” or a “cyst” after what we have been through. Everything we have, and our friends and family have, is going toward getting Daddy fixed and getting the children through Christmas. My sister shops for presents and mails them from New York. I buy a sun lamp to make up for the Oregon gloom. Colleagues deliver meals to our door, every day a different dish. Lasagna. Chili. Chicken salad. My mother ships off huge boxes of vitamins. I shower the children with showy and distracting gifts—a Barbie house for Georgia, edgy CDs with previously forbidden lyrics for Terry—and we all shamelessly abuse the terrified cat with affection. On Christmas morning Terence sits immobile in the Daddy wing chair, wrapped in layers of quilts. We bring him Christmas dinner on a tray and, as we do at the end of every day, hold hands and thank God we are together again.
Years later when Terence talks about those weeks, he will barely focus on Christmas, or the cat (who instantly takes a dislike to him) or the dinner, or the view or the tree. What he will remember is the dieffenbachia by his chair.
It is a plant he bought and cared for. In the melee, I have forgotten about it. Terence will recall sitting and watching the plant parch and die, knowing that he needed to get up and water it, or tell someone else to water it, but unable to muster the resources to do so.
If Dr. Turner’s office hadn’t called on December 26, I am sure we would never have thought about the cancer again.
Three days later, on Friday, December 29, four days after Christmas, two weeks and two days after Terence’s colon surgery, we appear in Dr. Craig Turner’s office, summoned there by that phone call.
Dr. Turner is young—we guess thirty (he’s actually thirty-nine). We later joke about letting children do such important work. Sturdy and handsome, he could be anyone’s idea of a TV doctor—a kind of a Dr. Kildare with a surgeon’s swagger. It’s rather endearing. It’s just enough to tell us that this is a man who is confident of his own abilities.
Terence tacitly makes his usual naming bargain: You can be Dr. Turner to me, but I’m MR. FOLEY to you. Even in pain, totally dependent, he doesn’t bend his formal, Midwestern 1950s principles. He doesn’t have any truck with informality—this whole first-name-on-first-meeting nonsense. MISTER Foley. DOCTOR Turner. The way it is supposed to be.
Yet without any discussion, it is clear that both Terence and I place total trust in this young man. Do we have a choice? What do we know about kidneys or cancer or centimeters or scans or surgery?
He talks about the “cyst,” which he tells us the scan has shown to be 7 centimeters in size, about the size of a large garden slug. His notes from the time use the words “very concerning” and “worrisome” and say that he will likely recommend that the kidney be removed.
Another scan on the second day of the new year (“suspicious for carcinoma” reports Anna Gail, M.D., who charges $695 for the scan, and another $100 to read it). A second opinion from a Dr. Kaempf. It is a punishing three weeks for Terence, as debilitated as he is from the removal of his colon.
As for me, those weeks blur into a haze of work, kids, and doctors. My family is nearly three thousand miles away. We have almost no close friends nearby. Sandy, my boss, hovers, motherly. Her husband, Gerard, takes the kids for McDonald’s; a colleague’s wife picks them up for a movie; a family down the street with four children absorbs Georgia into their midst. I even remember making one desperate phone call. “You and I have never met. Our sons are friends. My husband is ill. Can Terry spend the night?” I am so busy holding things together that I’m barely anxious at all. We have just solved one of Terence’s major health problems. Now we are going to solve another.
When I was in high school, a friend was in a severe car crash on the way to a birthday party. As the emergency workers and ambulance techs carried off the injured amid blood and glass and police and noise, she was frantic about the cake. “Don’t let the frosting slide off,” she kept repeating. January 2001 is a car wreck, and I’m focusing on the cake.
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.
5
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 thre
e 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.
6
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.
The Cost of Hope Page 6
