Never mind the part about recurrence. I took just one thing away from those fifteen minutes in the doctor’s office. We had to receive that Whipple procedure. Beyond this, I saw nothing. All focus went to the surgery. Getting that tumor out of Jim.
I do not remember leaving the doctor’s office, or how we got down the hall to the elevator, and from there to the parking garage, though I know Jim drove us home.
When we got back to Hunsaker Canyon—late afternoon by now, the hour that on another day we would have sat outside to share a glass of wine and reflect on our day—I took Jim’s hand and led him to our bed. I had collected my laptop along the way, and now as we lay down together I opened it.
“Let’s read each other our wedding vows,” I said. “I’ll go first.”
36.
This was not the first time in my life I’d received bad news. There was the call from my stepfather in Canada on Mother’s Day of 1989 to tell me that my sixty-six-year-old mother had an inoperable brain tumor. The late-night call from a hospital in Victoria, eight years before that: “Your father is in an oxygen tent. He won’t live through the night.”
There was a night in the summer of my thirty-sixth year—1989 again—having dinner with my children’s father in a little Vermont inn where I’d booked a room in the hopes of saving our marriage. The two of us, thirty-five and thirty-seven years old. Our children, five, seven, and eleven. My husband had set his fork down and looked at me from across the table (John Kenneth Galbraith sat at the table next to us; why do I always remember that part?) to deliver the news: “I don’t want to be married to you anymore.”
More moments I supposed I might never survive: When I was nineteen years old—May 1973—and the man I believed I’d love forever put two fifty-dollar bills in my hand and told me to go away and never come back, and the many months that followed when I begged him to speak with me again, to give me another chance. The fall I published a book about what happened when I was eighteen—1998 now—and just about every critic in America condemned not just my book but me. “The worst book ever published,” the Washington Post said. “Exploiter … kiss and tell artist … big mouth … the Monica Lewinsky of writers.”
And worse: my Ethiopian daughters when I said good-bye to them in April of 2011, turning their faces away as I reached to embrace them. The fact that I understood why made this no easier.
There was an e-mail once from Africa—October 2001—where my seventeen-year-old son had been traveling by himself for the better part of six months. “Malaria.” No phone number. No further e-mail contact. A car accident for my son Charlie in 1999—a policeman at the door. Another car accident, 1997, Audrey this time, her tin can of a car hitting black ice on a New Hampshire road, spinning 180 degrees into oncoming traffic, the car crumpled, my daughter’s glasses flung so far that the next day, when he visited the scene, it took her father half an hour to locate them in the snow.
She survived that one with a broken collarbone and stitches down the back of her head that still gave her trouble when it rains. Charlie was fine. Willy too. My parents died.
Money lost. Jobs that didn’t work out. The farm I’d bought when young, gone to my ex-husband. All of those lesser sorrows than the one consuming me now.
“There is a tumor in your pancreas.” If ever there is a moment, outside of wartime, that qualifies as sufficiently disturbing as to inflict post-traumatic stress disorder on a person, that brief stretch of minutes Jim and I spent in that doctor’s office when he told us the news would qualify.
I didn’t want this to happen, but I couldn’t stop it: The next day, and the day after that, and for weeks and months and no doubt years, though it’s too early to tell about those—I would play those minutes over in my head. Or random pieces of them, that came to me at unexpected moments of my day, and in my sleep, even. One would skitter across my consciousness like a rat in the night, then disappear again, but only temporarily. I might be putting away groceries or driving to the bank, making the bed or grinding coffee beans; they came to me as I watched Jim shaving or carrying out the trash, climbing into his car, lacing his shoes for our walk. I might be reading, or listening to a song, or picking up the mail, and there it was again, in flashback form, but terrifying as it had been the first time.
Borderline resectable. My father died of this. Things we can do to make you more comfortable. Six months.
You want to cover your eyes when they come into your brain, these random fragments from the worst twenty minutes of your life; only it’s not your eyes that let them in, or your ears either. They’ve taken up residence in your brain.
The white jacket. The plastic chairs. Jim shaking his head. My hand reaching for his. Him, polishing his glasses at this of all moments as if there were some mistake here that cleaning the lens might correct. Or maybe just to have something to do besides scream.
Not that he would have. He did not even cry, though I did.
There are things a person can do for PTSD, they tell us now. You go to a therapist who’s an expert at this, and you focus your mind on the very moment that torments you most, the one that keeps coming back, that you can’t get out of your head, and as you do this, the therapist has you look at her finger and follow it with your eyes as she moves it back and forth. This has something to do with the Rapid Eye Movement stage of sleep, when it is said that our most disturbing experiences are processed in the brain. I have known a few Vietnam vets who have been helped by this technique, and a few people who aren’t vets for whom this Rapid Eye Movement therapy proved to be a good thing.
Those twenty minutes in the doctor’s office that day were our Vietnam. Nothing would take them away.
37.
We learned a surprising fact. The tumor had probably begun to grow ten years before this.
A picture of Jim from 2005—in Rome with his children, laughing and eating ice cream cones in front of the Sistine Chapel. Even then it had taken up residence in his body.
It was there that night at the Lark Creek Inn, as we sat across the table from each other telling our stories. It was there as we sucked down our oysters in Point Reyes and danced in the kitchen and made love in Budapest. Long before we met it had been there—cells gradually multiplying, tentacles wrapping themselves around that vein. What if we’d known when it was smaller? That was the thing about tumors of the pancreas. Mostly, you only found out they were there when it was too late to do anything about them.
Then, not long after, you died.
It was November 14 when Jim and I received the diagnosis. Home again from the hospital that day, we had staggered up the stairs and lay in each other’s arms for the rest of the night. I read him my wedding vows. He read me his. We wept and at some point finally we fell asleep.
When morning came, it took a moment to remember what we had learned the day before. But for Jim the reminder was unmistakable: The pain was constant now, and terrible, as I realized it probably had been for weeks before. He just hadn’t told me.
We had to let our children know about the cancer—hard calls, though we delivered the news with as much optimism as we could muster. I told other close friends too, but we were keeping the diagnosis under wraps to the broader world of Jim’s community at that point.
“Nobody’s going to hire a litigator with cancer,” he said, though I also knew Jim would never mislead a client. In those early days after we learned the news—just at the moment his business has started picking up—I’d heard him on the phone with some prospective client, explaining that he would be going through chemotherapy soon, and couldn’t commit to the case.
There was a surgical procedure Jim needed—not the Whipple at this point but a less involved surgery, the first of many. This one called for the insertion of a stent in his bile duct that would relieve some of the pressure caused by the tumor. But a person couldn’t get this surgery until his bilirubin count went down sufficiently, and so every day Jim and I made the drive to the Kaiser hospital in Walnut Creek, fifteen minut
es from our house for a blood test.
This was only the beginning, of course. We knew there would be all manner of procedures and treatments ahead—though we could have had no idea how many, for how long, how hard they would be, how much worse the pain could become. We knew Jim would be receiving chemotherapy (this meant another surgery, for the insertion of a port) but this too had to wait until the stent was in place. Meanwhile, Jim was suffering a lot of discomfort (Discomfort. There was a euphemism).
Just the week before, Jim had tackled a long bike ride. Days later, I could tell from his face that the pain was constant, and grave.
While there remained no question that he had cancer of the pancreas, we learned that there were two different kinds of pancreatic cancer, adenocarcinoma and neuroendocrine. Though both were terrible, neuroendocrine cancer of the pancreas offered a little more hope. Now he needed to undergo a procedure that would confirm, definitively, which kind he had.
Ten days earlier, it would have been bad news to learn Jim needed gall bladder surgery. Now it would have been good news to discover that all he had was neuroendocrine pancreatic cancer. Not that it wasn’t still life-threatening. Steve Jobs had died of that one. Neuroendocrine pancreatic cancer was bad, just not quite as bad.
It turned out that Jim had adenocarcinoma. The bad one.
38.
Here was another thing I was coming to discover. Though the diagnosis we had received not even two weeks before was close to a terminal one, it was not the prospect of death we dwelt on. There is no way, I think, for a person to get his brain around the likelihood of his own imminent and painful death—and keep his mind there on a twenty-four hour basis. The same may be true for the woman who loves him.
So we set our sights on more direct and immediate obstacles, and with few exceptions, getting through those was as far as we chose to look. We did not look at—or even, I think, imagine—the prospect that Jim would die. We focused our energies on whatever extraordinary measures would be required to keep him alive, and in spite of everything—the grim statistics, the look on the face of the doctor delivering the news that first afternoon—we chose to believe that we could do this.
In the pop psychology of the medical realm, this approach is generally labeled “denial.” I view it differently. Our way of dealing with Jim’s diagnosis was never a conscious choice, but a way of thinking we embraced within the first hours after learning the news because it allowed us to carry on.
When you are bailing water in a sinking boat with a hole in the bottom, you have to believe there’s a chance you might make it to dry land—or why keep bailing? The belief that Jim might survive the cancer sustained us; it made it possible to put forth the efforts we did in those first days, and all the ones that followed. If some viewed this as “denial,” or evidence of pathology, I preferred to see it as an extreme and unquenchable brand of optimism.
The thing about hope is that it provides the motivation to try. Our first step was clear. We knew we wanted to leave the Kaiser medical system and seek out another medical facility, other doctors, who might offer us more than that first physician’s virtual death sentence. This also meant locating a new medical insurer. (Here came a new definition of good luck: Jim’s diagnosis was received in the month of November, and not February, or June, or August. In the newly instituted world of Obamacare, November had been designated an open enrollment period. Thanks to this, we could shop for a provider that would cover treatment by any doctor or facility we chose, despite the cost, and regardless of a pre-existing condition. Jim’s premium would be high, but given the kind of treatment we knew we’d be embarking on, it would be a bargain.)
The morning after we got the news, I began my research into alternatives. I got up at five now to start placing calls to the East Coast, gathering information about the kinds of treatment offered at Mass General, Dana Farber, Mt. Sinai, Johns Hopkins, UPenn. As the sun made its way across the country, I shifted my focus to facilities in the South, the Midwest, and then Texas. By the time nine A.M. rolled around, when they started answering phones at offices in L.A. and San Francisco and Seattle, I had already filled pages in my legal pad.
I made lists of clinical trials, and when I read about one that sounded promising, I got to work constructing a way we might move to the city where it was taking place (Philadelphia, Miami, Pittsburgh). I gained access to papers generally unavailable to the layperson on new research into pancreatic cancer—immunotherapy, gene therapy, proton therapy. Bent over our kitchen table, I worked to decipher the language, so far from my own vocabulary. Leaned up against the wall: three separate white boards that I once used to map out my novels. Now they displayed my lists of calls to make, addresses to mail Jim’s scans, phone numbers to follow up on.
It was grueling and often discouraging—because the truth was, researchers had come up with very little that appeared promising. But the alternative of sitting still and letting grief overtake us—grief, and then death—would have been so much worse. Sometimes days went by in which I didn’t wash my hair or change my clothes, and sometimes I found myself on the phone with my three yellow legal pads in front of me and a separate receiver on each ear, so I could speak with one medical facility while on hold with another.
I became an unrecognizable person over the course of those early days. Or maybe just the same person in unrecognizable circumstances, which sometimes gave me the appearance of a crazy person, probably. I’d be partway into a conversation, and suddenly realize I was talking at double speed. When it got too late to make any more phone calls—the East Coast offices closed down, and then the West—I stayed hunched over my laptop planning the next day’s assault on the tumor. Even lying in bed, even when the lights were out, I couldn’t stop thinking about it.
One thing I did not do, after that first day, was cry.
What Jim was doing over those first days and weeks is harder to say. He took a lot of blood tests—the crucial number being something called his CA19-9, which measured the levels of tumor antigens in the blood. We took some comfort in the fact that although Jim’s CA19-9 was well above normal, at 135 it wasn’t nearly as high as those of some cancer patients, which sometimes spiked into the thousands.
He spent a lot of time in his office. He actually tried working on cases. But I think it was also, for him, a nearly full-time occupation dealing with the pain. He had drugs, of course. Hydromorphone. Oxycodone. But he used them sparingly. “I don’t want to get addicted,” he said. Addiction—a kind of problem that suddenly seemed like good news, because to have an addiction problem means you’re alive.
But physical pain was only one piece of Jim’s story, though it was the part he occasionally allowed himself to acknowledge. Nothing hurt more, I suspect, than the emotional torture of what he was attempting to absorb and navigate in those first days of recognizing that just about every single dream he had envisioned for his future was slipping away. This, he kept to himself.
39.
Another aspect of my research—less science-based, but crucial for keeping our spirits from sinking into the abyss—had to do with seeking out people who had been diagnosed with pancreatic cancer like Jim’s who had survived, people who were alive and doing reasonably well after a space of a couple of years or longer. I was on a mission to find role models for Jim.
These longer-term survivors I located (four years out and not dead yet; five, seven) might not represent anything more than a single-digit percentage of the curve, but I wasn’t looking for statistical efficacy, I was looking for hope. I knew how the graph of survival percentages looked, dipping dramatically six months after diagnosis, and then continuing on a sharp downward course all the way to somewhere around the twenty-four-month mark, at which point it went nearly flat, hovering barely above zero. This was the norm, all right, but we were not going for normal. If there were even a dozen people out there who had managed to beat the odds, I wanted to talk to every one of them.
Each time I heard about a person who had out
lived the life expectancy of a pancreatic cancer patient, I tracked him down. It was a small enough world that the same names sometimes came up. There was a woman in Southern California named Laurie, whom I must have heard about from six or seven different people that first week, who was active in the PanCan organization and website. She was going on eight years now since surgery. There was Robert in Miami—an attorney who’d experienced a recurrence of cancer within months of his Whipple surgery, but had managed to stay alive and active longer than anyone would have predicted. There was a man in Boston, Joe, initially told he would not qualify for the Whipple, who’d managed to have the surgery two years earlier and now played tennis three times a week.
There were more, of course. And because talking to these people offered more comfort than anything else at that point, I stayed on the phone a lot.
These were cold calls made from our kitchen where I now stationed myself for eight, ten, sometimes twelve hours a day—pacing the room as I talked, more often than not my sole form of exercise. I’d introduce myself, asking first if they’d mind telling me their story. Invariably, they took the time to do this—as, later, I would do the same for other newly diagnosed pancreatic cancer patients, or wives or husbands or brothers or sisters of pancreatic cancer patients. We might never have met and in most cases never did, but we recognized a connection deeper now than what I knew with most of my friends, through the shared experience of this most terrible disease.
The Best of Us Page 15