The Best of Us
Page 19
The animals in our part of the canyon ate well that season, even if we didn’t.
50.
Our quest sent us east. We wanted to interview surgeons and their medical teams at the three top Boston hospitals: Dana Farber, Mass General, and Beth Israel Deaconess. On each of the three days a different surgeon, a different interview.
We both liked the surgeon we met at the first hospital we visited, a man whose reputation was well-known to me from my research, who had performed hundreds of Whipple procedures. In the weeks leading up to this trip, I’d spoken with a number of his former patients, all of whom spoke highly of him.
“You only get to talk to the ones who are still alive,” Jim pointed out.
After that visit, driving back to New Hampshire where we were spending the night, Jim and I agreed that we could not imagine a better surgeon.
The next day we met with a second surgeon, and had a second meeting with the great Boston pancreatic cancer specialist, Dr. Brian Wolpin, whose name came up a lot in my telephone research, to hear his analysis of Jim’s scans. With two strong candidates for our surgeon now, Jim was tempted to forego our meeting with the last surgeon, Dr. James Moser, at Beth Israel Deaconess Medical Center.
“We’ve come this far,” I said. “We should hear what he has to tell us.” So we went for our third interview.
Dr. James Moser was what my mother would have called a cool customer, but warmth and sense of humor were not near the top of our list of requirements for the person to perform Jim’s Whipple surgery, assuming he would be able to have it in the first place.
Dr. Moser was in his late forties, probably, handsome and trim, with silver hair and a confident manner that displayed little in the way of emotion. This may have been a good thing for a man who spent his days meeting with patients suffering from a form of cancer that would kill the vast majority of them. Sitting in the waiting room awaiting our appointment, studying the other patients with consultations scheduled that day, I reflected on the statistics. Twelve patients waiting their turn. With luck (there was that word again) half would qualify for a Whipple. Of those six, four would die.
Please God not Jim.
When it was our turn to see Dr. Moser, what I noticed first were his hands. They looked just how you would expect a man’s hands to look who spent the majority of his waking hours in the operating room rerouting the gastrointestinal systems of pancreatic cancer patients—perfectly manicured nails and long elegant fingers that looked as if they had never touched a garden tool or tinkered with an engine. Skin soft as a baby’s.
He sat across from us, this man who—if we chose him as our surgeon, and if he agreed to perform the surgery—would literally hold Jim’s life in his hands. I would have set a sack of gold coins at his feet if it made the outcome any different. Promised him anything.
He did not dwell on the prospect of a cure. What he said that afternoon was that he had studied Jim’s scans, and believed Jim had a reasonable shot at getting the Whipple. “I can get the tumor out,” were Dr. Moser’s words, spoken with more confidence and assurance than either of the others we’d met on this trip. He had performed hundreds of Whipple procedures, he said. This one would be more complicated than most, due to its location, but he could take it on.
Hearing his words, the two of us had felt close to euphoric. New definition of good news: getting to have surgery that would totally alter the configuration of your entire digestive system and leave you with severe difficulties digesting food for the rest of your life.
We left the hospital that day filled with optimism, and the pure, groundless faith, borne of absolutely nothing but the need to believe this, that for us the story would be different. Nothing had gone wrong yet. As long as that remains so, you can still believe that anything might be possible.
Over the months that followed, Jim would return to Boston several times for scans—performed in Boston, rather than at the local cancer center where he received his infusions, because the Moser team wanted to study the images taken by their own equipment. Then would come a procedure called CyberKnife in which the precise location of the tumor—what was left of it, after chemotherapy—would be mapped radiologically, and attacked, over the course of a week, by a series of robotically programmed doses of radiation.
Once this had been done—assuming all else went as Dr. Moser hoped—Jim would be ready for the Whipple procedure. After that would come a period of recuperation requiring close monitoring—meaning we’d live in Boston for at least two months before returning home.
Home. A place we loved. So why was it that we chose to go so far away for treatment?
At the time, when friends asked us this, I told them that we were looking for the best hospital in the country for Jim’s surgery, the best surgeon—and it is true that Boston offered superlative treatment. But where we lived, in the Bay Area, we had two world-class medical facilities within an hour’s drive: UCSF and Stanford. So why did we feel the need to uproot ourselves as we did?
I think now that it was more magical thinking. Though we didn’t say this to ourselves at the time, the choice to seek out treatment three thousand miles from home was another way we allowed ourselves to believe that we had tipped the odds further in our favor. If Jim traveled farther, he might do better. If surgery in Boston required more of us, surgery in Boston might offer us something more than what the more obvious path might yield. Jim’s survival, for instance.
After that first consultation with Dr. Moser and the decision to go ahead with the Beth Israel team, we returned to our New Hampshire hotel that afternoon with a sense of excitement and resolve. The Boston oncologist, along with Dr. Moser, had recommended that Jim go on the most demanding form of chemotherapy—Folfirinox. “You’re young,” she told Jim. “And in good shape.”
Bring it on, we said. If Folfirinox was tougher than the other chemotherapy drugs—if it would be harder to tolerate, and make Jim sicker—this stood as simply one more way that our outcome would be different from the more typical outcomes for pancreatic cancer patients.
Jim was tougher than most people. So was I. If our treatment was brutal, it was more likely to work.
“Our treatment.” This was how I spoke now. Same as I said later, to a friend—without even thinking about this—“We’re on Folfirinox now.” And, “We’re getting CyberKnife radiation.”
I—the woman who had called herself a solo operator for twenty-five years, now saw myself as so inextricably linked to the man I had married that there was no way he could suffer from cancer without my doing the same. I had cast my lot in with Jim. That Fourth of July weekend when we spoke our vows with the fireworks exploding over our heads had not been the real moment when I crossed the line from single life into marriage. But I had crossed it now, though the landscape we traversed, that brought me to this place, was the most desolate I’d ever known.
This was marriage. Not the romantic dream anymore. But the bedrock.
51.
We spent one last night in New Hampshire before flying home to California. When I woke up that day, an unlikely thought came to me.
The weather had been frigid all week. But no snow had fallen—or at least, only the thinnest dusting the night before. Though I had lived in a warm climate for over two decades by now, I knew what this meant. Perfect conditions for skating.
I called an old friend who still lived in my hometown to ask if she had extra skates. Then the two of us headed out together to the old Mill Pond.
We laced up our skates. The ice was glass that day, with no one else out. Twice we went round the circle the way we had as children. Then I pointed to the frozen river that lay beyond the circle.
“What do you think?” I said to Morgan.
We took off down the river, blades slashing through the thin layer of newly fallen snow, sun hitting the frost in a way that made the whole world glitter. Cold as it was I took off my hat and let my hair fly behind me, racing as fast as I ever had on skates, racing as if somethin
g were chasing me, and in some ways it was.
In my head, I could hear Joni Mitchell from the Blue album, my favorite. I wish I had a river I could skate away on. Slash, slash. Blades on ice. Wind whipping my cheeks. Blood racing. The sound of ice expanding, that sounded as if the whole glassy surface might be giving way. Keep moving fast enough they’ll never catch you. Keep moving and you won’t fall in.
52.
As promised, the Folfirinox was rougher than the previous chemo, but Jim never complained. In late February, a new round of tests revealed that Jim’s tumor markers—his CA19-9 numbers—were going down. This was the best news we might have gotten, and an indication that the chemo infusions had been shrinking the tumor. When he returned to Boston for his next scan, this was confirmed. The scan after that one was even better.
Still, there was seldom a day without some problem, and most of them required calls to the oncologist or the nurses. Four times now, since Jim’s diagnosis, we’d had to race to the emergency room when Jim was suddenly doubled over, or painfully constipated, or suffering some other of a long list of mysterious symptoms and troubles. As much as I hated our trips to the ER, I had come to dread holidays and long weekends, knowing that when one of those rolled around, our access to the doctors we counted on would be curtailed. More than once, I had found myself counting the hours through a holiday weekend, waiting for the specialist we needed to come back on duty.
Still, we kept trying to carry on with our lives. In January I went to Lake Atitlan to host my annual writing workshop there. I’d gone by myself, leaving Jim to make a Boston trip on his own—staying with our friends Jason and Karen in Brookline—but after, he joined me at the lake, and we spent two full weeks there between infusions.
Those were some of our good days. The good days among our bad days, anyway. A whole new category. Jim’s hair was growing back, and he had put on a little weight. Though we no longer set out to climb the volcano as we had the year before, we still walked into the village every afternoon to buy vegetables in the market and paddled the kayak, and prepared meals together that we shared on the patio overlooking the lake. In seasons past, Jim had swum in the lake with me. Now he took photographs of it.
My editor Jennifer and her husband, Peter, joined us for the second week, and when Jim learned that Peter had ridden a motorcycle in his youth, the two of them rented a couple of Kawasakis and took off on them for the day. Nights on the patio we sat out late talking about rock and roll, and on the last night we set off a fireworks show with the plan that next year Jennifer and Peter would return, and Peter and Jim would outfit a raft with fireworks for an even bigger display to light up the lake.
Jim and I discovered something on that trip to Guatemala. As much as we loved our home, and as hard as we’d fought to buy that place less than a year earlier, now it felt good to be away from there. Everything that surrounded us in Hunsaker Canyon reminded us of how we’d imagined our lives would go there, before. Everything reminded us of everything we were at risk of losing, if we hadn’t lost it already.
It was an illusion to suppose that by getting on a plane we could escape what was happening in Jim’s body. Still, whenever we left home, the heaviness lifted. It was easier to pretend, when we were in New York, or New Hampshire, or Lake Atitlan, that what we had left behind us was not simply our home, but Jim’s diagnosis.
We had to go back to the U.S., of course. As we boarded the boat that would take us across the lake to the car that would bring us to the airport, and from there to San Francisco, I knew it was all about to start up again: the infusions and the blood tests, the piles of bills on our dining room table, new ones arriving daily. I thought of the look on one doctor’s face as she had said to me, when Jim’s most recent stent had failed, that perhaps we should insert a metal stent, even though doing so would require him to be on antibiotics for the rest of his life.
“The rest of his life?” I said. How could a person’s body withstand an unending course of antibiotics?
She had paused then.
“Well, it’s not like we’re talking about …” she said to me. Then stopped herself.
We got home in March. A week later—with one more infusion behind us—my editor at Travel + Leisure called me up to see if I’d like to do a story for him on the Lake District of Chile.
It had been months since I’d written anything more than a Facebook post. My novel, that I’d believed to be nearly finished when I set it on my desk the previous November to accompany Jim to the hospital for what we thought might be a diagnosis of gallstones, had sat untouched since that day. The cup of coffee I’d been drinking that morning, before we took off for the hospital remained by my computer monitor in my abandoned office all these months later with a thick skin of mold over the top. Now I said yes to the assignment and booked our tickets to Chile.
53.
As we did before, we had to fit this trip in around the timing of Jim’s Folfirinox infusions. To fit in the maximum time for our trip, we’d get on a plane the afternoon after he’d received treatment, and then return home the morning of the day he was due for his next one. He looked sick enough at the gate where we waited to board the plane that they allowed us to preboard, as most airlines did now, and we both knew Jim would probably be sick on the plane too—but as Jim pointed out, he’d be sick wherever he was, so why not on a plane headed to a marvelous destination?
He always seemed better once we arrived wherever we were going. This time the trip would last for twelve days. We would stay at two different luxury hotels in the Lake District and spend a night or two in the capital city of Santiago. I held out some hope that the high-quality meals would allow Jim to put on a few pounds.
In Santiago we visited the home Pablo Neruda had created for his mistress at the time, Mathilde—who would later become his third wife, and the inspiration for many of his most passionate and romantic poems. At the Neruda house, I bought a copy of Veinte Poemas De Amor—in Spanish on one side of the page, English on the other—to bring with us to the lake. At night I read them to Jim in both languages. Never mind that he spoke no Spanish. There was music in the sound of the words.
In part because of the poetry, but also because I shared a certain kinship with Neruda’s style of making a home—crazily eclectic, funny, romantic, with an eye toward hosting friends and creating spaces for love—I became obsessed with the story of Neruda: the houses he and Mathilde had shared, and their love affair. Though time was short on this trip, I suggested we rent a car—a BMW convertible—and drive to Valparaíso, and from there to a spot on the coast called Isla Negra, to visit the two other Neruda homes. As usual, Jim was quick to agree, and quicker to take the wheel. We had only one day to make the trip, but Jim drove fast.
That night, after we’d taken in the last of Neruda’s houses, we stopped into a little restaurant on a side street in Valparaíso. At the table next to us, a couple—easily thirty years younger than we were—talked on their cell phones for the duration of their meal. Sometime near its conclusion—with the man and woman still on their phones, neither meeting the eyes of the other—Jim pointed his Nikon in their direction to capture the image. There was no need for him to say it: He would never spend a meal with me speaking on the phone, any more than I would.
“What a waste,” he said, taking my hand as we headed back out into the night.
Next morning, we made our way to the Lake District. The first hotel had been a perfectly maintained gem of 1950s modernist architecture overlooking a lake and a volcano not completely unlike the one we knew well from our days in Guatemala. One night we descended the steps to the lakeshore. Side by side, we lay together on the dock, looking up.
“The Magellanic Cloud,” Jim said, pointing to a spot in the blackness above us. “We never get to see it in the Northern Hemisphere.”
“I always wanted to lay eyes on that constellation,” he told me. And who was I, a woman who never even knew until now that the Magellanic Cloud existed, I told him.
For our last day in the Lake District, one of the guides at our second hotel—this one an adventure lodge—had suggested a number of hikes of varying degrees of difficulty. The one we chose, Mt. San Sebastián, was the most challenging, he told us—a climb that would bring us to the top of a twelve-thousand-foot peak in the Andes. Very few guests at the hotel—including the hotel owner himself—had ever made it to the summit. But we would, we said.
This was the toughest climb I ever attempted, and for Jim, who had once done Mt. Whitney, up and down, in a single day, the second hardest. Only this time he was heading out on the trail with five rounds of Folfirinox in him.
Several times along the way, I thought I couldn’t go another step. I made a bargain with myself: Just get to the top, and you’ll know you are strong enough for whatever lies ahead back home. Meaning undergoing the Whipple procedure, of course. Or loving a man who undergoes the Whipple procedure. No incision in my case, but what lay ahead for me would cut deep too.
There were a few places on the trail where I had to get down on my hands and knees, the climb was so rugged and steep, and it stretched for hours. For his part, Jim sometimes seemed to be moving in slow motion, like an ancient pilgrim, but he never stopped. A couple of times, I looked up at his thin body moving through the trees, the ever-present camera strap around his neck, the back of his head under his baseball cap bare of the hair I’d loved to stroke. “Remember this moment,” I told myself.