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:
LEFT KIDNEY: Sections of the kidney show extensive necrosis within which several small foci of viable neoplasm are found. None of these foci impinge on the capsule and no neoplasm is found at the ureteral or vascular margins.
The neoplasm is composed of cells of small to intermediate size with moderately pleomorphic nuclei that vary threefold in size. There is polynucleosis with nuclear grooves and lobulation. Many of the nuclei have small but distinct nucleoli and/or chromocenters. The cells are arranged in a solid pattern with fenestrations.
Immunohistochemical stains show that the neoplastic cells are positive for keratin 7 and vimentin. They are negative for CD10 and CEA.
On January 6, 2011, a decade after those words were written, I decide to go find their author.
I wish Terence were here with me as I head out to Providence Portland hospital to meet Dr. Howard for the first time. I decide to make the trip the way Terence and I would have made it ten years earlier, starting from the driveway of our house.
The towering cedars are still there, now even taller than before. The garage door that Terry and his friend Michael ran into with their skateboards has been repaired. I peer around the corner. Georgia’s playhouse is gone. Yet here is the sweeping view I remember, far out to the mountains and the horizon. Terence was right. The house turns its back to the street, and to me. The view is beautiful, but there really is no way to share a Christmas tree with the rest of the world.
I don’t know how the drive to these hospitals lived in Terence’s memory. I suspect that when he was sick he was focused inward and didn’t notice much at all. He entered one hospital in great pain through the emergency room, and the other facing a life-changing operation. I remember these days as sensations, long stretches of super-speed blur abutting moments when time seemed to stand still and I became aware of every fleck of lint on a doctor’s coat, and every snag in the fabric of the waiting room sofa. I wonder if, returning, he would have the same reaction I do now. Would it surprise him, as it does me, that the journeys we made then with the sensation of having our fingers in a light socket are in reality so prosaic?
Would he realize that the scary trips are really perfectly ordinary jaunts past a Fuddruckers and a Home Depot and a Bed Bath & Beyond?
Before I go to meet Dr. Howard at Providence Portland, where the cancer was removed, I take a detour over to Providence St. Vincent, on the other side of town, where the cancer was discovered. Would Terence find it amusing that on this return trip I know instinctively—from all the practice a decade earlier—that, as I enter the Providence St. Vincent hospital grounds, I can drive past Mother Joseph Plaza to the second parking garage and find a spot in 1-C, next to the bicycles, bypass the elevator, and walk straight through to the West Pavilion?
The hospitals are like small cities, brick and khaki mazes with populations twice the size of Portland when the hospitals were founded. Today at Providence St. Vincent I eat lunch in the cafeteria where the children and I ate dinner every night while Daddy lay upstairs. The ice-cream machine is gone, but the grand piano is still there, pushed back against the wall. Every night when we visited there I remember feeling that ours was the only family in the world, that Terence was the only husband, and mine the only story. Today I see an orderly in blue scrubs and running shoes help himself to barbecue pork and coleslaw and, with a casual boredom, pick a bag of chips from a wire rack. Watching him, I realize once again that my unique story is his workday. All day long people with stories like ours are coming and going through these workers’ lives. These are, after all, just hospitals. Ordinary hospitals.
Despite their sprawling size, neither hospital is huge, as hospitals go. Yet together they provide the livelihood for 7,648 people like that orderly, people who come to work here every day, park in the lots, eat lunch in the cafeterias, exchange small gifts at holiday sing-alongs. Each of the patients who sleeps here each night after gallbladders are removed, lumps excised, broken bones set, and new children ushered into the world helps 7.6 other people raise their families, pay their mortgages, and visit Disney World. And they’re just a microcosm of the millions of people around the country doing pretty much the same thing day in and day out. Checking blood pressure. Looking into eyes and ears. Taking blood.
I head back across the city to Providence Portland, where Dr. Howard badges me past the door that says “Authorized Personnel Only.” Hundreds of patients enter the hospital every day, thousands every year, brushing past Dr. Howard’s world but not realizing he’s there, discovering the truths that will influence the lives of patients and their families.
The lab is relatively quiet. In the evening, after samples collected around the state begin arriving by FedEx truck, the lab warren becomes an assembly-line factory, as technicians settle in for the night to shave micron-thin slices of tissue, fix them on slides, and apply reagents and antibodies to fluids. The machines and people work all night. Trained eyes peer through microscopes. Assistants prepare reports, bringing good news, or bad, to anxious patients.
It is here, into this tangle of microscopes and slides, technicians and trays of tubes capped in purple, gold, magenta, and red, that a sliver of Terence’s tumor made its way.
Dr. Howard runs the whole lab today; back then he was in charge of only a section of it. Today, I can tell that he and Terence would have enjoyed talking to each other. Dr. Howard was a biophysics and history major at Amherst with a Sunday night campus radio show—he still has a tape of an interview he did with Henry Steele Commager. He looks like a geek, yet his office is a jumble of kites and bobbing-duck barometers, and topographical maps; on the door is a photo of him on a motorcycle. When he was a kid he wanted to be a geologist. Or an astronomer. He settled on pathology because he wanted a place “at the cutting edge” of science.
Sitting on his desk today are the nineteen slides, arranged neat
ly in a cardboard tray, all labeled: Terence Foley/Case #P01-922. We take those slides and walk down the hall to a double-headed microscope where we can look at them together. For all the space-age, stainless-steel, digital-flashing aura of the lab, the basic technology of pathology hasn’t changed in over a century, and the basic tool is still the eyeball.
I learn that on one level, a pathologist’s work is very exacting. A chunk of the tumor is fixed in formaldehyde to keep the cells from disintegrating and then locked into a block of paraffin to preserve it. For each set of tests, a thin slice is shaved off and stained. Without the stain, Dr. Howard says, the cells appear like ghosts on the slides. The nucleus is stained a dark blue, almost purple.
Eosin, a fluorescent dye, then stains the membrane and the thick liquid of the cytoplasm. Then with the contrasting stains, you can clearly see the cells and their nuclei and their shapes.
As he would have back then, Dr. Howard today first trains the microscope on a slide from a normal spot on Terence’s kidney. He lets me look at these cells. They are a placid pink, flat with gently undulating edges. The tiny flecks of eosin-stained blue that are the cells’ nuclei are widely spaced and regularly placed. The whole impression is of calm and order.
Then Dr. Howard switches slides. This slide has a piece cut from the middle of the tumor. I focus the eyepiece. My vision fills with tiny blue dots—hundreds of cells’ nuclei—randomly and angrily jostling against one another.
“Ants!” I say, surprised.
“Ants,” he agrees. “It’s how I would describe it to a class of residents: chaos in the anthill.”
Even I can see that something is wrong with these cells. There are too many nuclei, too many cells. They are pushing and shoving against one another. They have broken ranks. They are disorderly.
Dr. Howard moves the slide slightly and I can see a single cell frozen in time, stopped in the process of dividing. Surrounding this chaos—just alongside the anthills—are cheerless blank pools of calm, not the calm of the normal cells, but an eerie pale nothingness. This is the necrosis—the cell death—that he mentioned in the report to Dr. Turner. That morning in 2001 when Dr. Turner removed the tumor during the surgery, the cells were growing so fast that they were outstripping their own food supply and dying almost as fast as they were being born.
I’m not sure what I am supposed to feel now. Am I supposed to be horrified? Disgusted? Sad? In reality, I am fascinated. I think Terence would have been fascinated too, yet caught between two emotions. He hated anything abnormal or strange or gross. He banned all medical talk at dinner. So perhaps these views of his own malady would have frightened or revolted him. On the other hand, he loved knowledge. Any kind of knowledge. I can picture him with his ever-present stack of index cards taking detailed notes, imperiously slowing down the conversation until he got the spelling right. And me? The thought that pops into my head is uncouth: “So you are the little bastards who killed my husband!”
The cancer part is clear. That’s not hard. Even my civilian eyes can see that Terence had cancer. But collecting duct cancer? What is that?
Together Dr. Howard and I peel back the layers of the story of what happened next.
As Dr. Howard takes me behind the scenes to discussions that took place unbeknownst to Terence and me, a weird contrast emerges. From back in the past I remember the adamantine certainty Terence and I both wanted from the lab report. What did he have? What would it do to him? What should we do? Even the words “lab report” promise an objective reality.
Yet today as he talks to me, Dr. Howard is very clear himself that while the science is precise, the conclusions are not. “It’s a standing source of amusement—or bemusement—among pathologists that if you take a team of ten world experts and give them each ten slides from a breast cancer and see how often they agree, it’s disappointingly low. In borderline calls, they are all over the place,” he explains. “It shows that we’re always looking for black and white, but things are often shades of gray.”
I learn that one way of distinguishing cancers is simply by looking at the shapes and characteristics of the cells. Another way is by seeing how they react when different antibodies are applied.
Dr. Howard does both.
The most orderly, sensible method is through a kind of flow chart that plots an orderly course of action—an algorithm, he calls it. Do the cells react to this? If so, then do this. If not, do that, and so on in a predictable pathway until a picture emerges and he gets an answer—or runs out of options and must make a call without knowing for certain.
If he’s in a hurry, he can do a lot of tests at once, but that’s more expensive. Each of the antibodies costs from fifty to one hundred dollars; the more targeted the approach, the fewer the tests he must do, and the cheaper it will be. “The sisters”—the nuns who manage the hospitals—“run a tight ship,” he says. He applies one antibody. In the presence of this antibody, a “garden variety” kidney cancer will turn brown. Terence’s cells did not.
Dr. Howard shows me the ghostly pale slide from Terence’s stained tumor side by side with the much darker one from a known ordinary kidney cancer. All that proves is that Terence’s cancer cells weren’t of the common variety—and that’s the source of Dr. Turner’s statement to us in the first meeting that the cancer was “of unknown origin.”
That’s as far as Dr. Howard could take the analysis back then. Even his lab—a big lab, inside a big hospital that does tests for other hospitals all over the state—can’t afford to keep rare antibodies around that will be used only once or twice a year. So he didn’t have access to the more specialized substances that would be needed to test the tumor further.
As for the economics of testing, Dr. Howard knows only the cells and the science. He doesn’t know which patients pay and which don’t, or whether the people whose cells he is testing have insurance or not, or what kind. He didn’t know—nor did Terence and I know at the time—what the hospital billed for the tests or what the insurance companies paid, or how anyone arrived at any of these numbers. His job was to figure out the ailment in the most efficient way possible, not to figure out how to pay for it.
Dr. Howard’s tests back then were inconclusive. He wanted to know more, so he turned to a more specialized lab. On January 25, 2001—the day Dr. Turner talked to Terence and me—Dr. Howard sent the slides to Dr. Allen Gown, at PhenoPath Labs in Seattle, where some of the hardest cases in the country make their way.
So now I drive up I-5 to Seattle, a three-hour drive from Dr. Howard’s Portland office.
PhenoPath Labs is right where you would expect a start-up to be, in the Fremont section of Seattle, a funky gentrified Haight-Ashbury kind of neighborhood. Adobe, the software company, is nearby. So is Google. Wooden-front stores with handwritten menus sell cappuccino, cinnamon lattes, organic food, and running gear. A pathway looks out over Lake Union, and also over the canal that runs from the lake to the sea, passing the blue industrial-looking building where PhenoPath’s sixty-five employees work. Dr. Allen Gown rides his bike to work along that path; his helmet hangs from a rack in his office.
Dr. Gown founded the company in 1997, just four years before Terence’s cells entered his life. He was a professor at the University of Washington when he chafed at his department’s management and decided to strike out on his own—becoming another start-up in the $55 billion testing industry. Just outside his office, a quiet, library-like room is filled with about a half-dozen seven-headed microscopes, so that as many pathologists as possible can look at difficult slides at once. Off to the side, in a darkened, curtained alcove, a doctor is doing a FISH test, a fluorescent test looking for a mutated gene. With this test, pathologists can look deeper into the DNA of cells than was ever possible a decade ago.
In the back room a half-dozen identical white machines turn out to be computers programmed to add dyes and reagents and antibodies to slides. The technicians have named these machines and taught them to make odd sounds when they have finishe
d their tasks. While we are talking, a machine named Isabelle moos. Klarabelle calls out, “You’ve got troubles!”
“That’s so we can tell which machine needs attention,” Dr. Gown explains—when they have finished their work, for example. We walk past a white, coffin-shaped contraption. The device sends one cell at a time shooting through a tunnel, so that each individual cell can be examined. “That baby cost twice what my first house in Seattle did,” says a technician sitting nearby. I look the machine up online. It’s called a flow cytometer. Such machines can cost $75,000, $100,000—even $200,000.
A second technician sits at the computer screen that goes with it, grappling with analyzing the cells from a blood cancer.
The lab at PhenoPath gets the complicated cases. The difficult cases. The ones that other doctors can’t figure out, or that they disagree on.
But even Dr. Gown has seen only a few collecting duct cases in his lifetime.
When Dr. Howard sent Terence’s cells here, all he knew was what they did not react to. That’s why he sent them to Dr. Gown: Back in 2001, Dr. Gown had access to more antibodies and more tests. To Terence’s cells, he applied an antibody—34βE12—and the cells turned an angry, positive color. Today he taps a few keys on his computer and the picture of Terence’s cells from back then—a deeply hued abstract of brown, purple, and black—appears on the screen.
“I developed that antibody when I was a professor at the University of Washington,” he says casually. It is now used by pathologists all over the world. “The university makes millions of dollars every year from it,” he says. Then he holds up his thumb and forefinger an inch apart: “Full disclosure—I make this much.”
Dr. Gown did four tests on Terence’s cells, using the antibody he developed, as well as three others. Two tests were positive, two negative, a pattern that led him to conclude that the tumor was indeed of the collecting duct variety. On January 29, 2001, he sent that report back to Dr. Howard, and that is when Dr. Turner called us with the news.
The Cost of Hope Page 7
