We made it. From where we stood, at the highest point of Mt. San Sebastián, we could see all the way to Argentina.
It was almost dark when we got to the bottom of the mountain, and we had run out of water. We could have made it with our empty bottles at that point. We were ten minutes from the car.
The only reason I can account for what happened next is that we were just so crazed from exhaustion our minds no longer worked clearly.
Our guide offered us a sip of water from the stream flowing past us on the trail. We took it.
Four days later—home again in California now—we were both hit by a powerful case of stomach cramps and diarrhea. For me, this lasted just twenty-four hours. For Jim, it was much worse.
He was diagnosed with a parasite called cryptosporidium, an affliction easily curable with antibiotics for the healthy population but life-threatening to anyone with a compromised immune system.
At daybreak on Easter Sunday we placed an emergency call to an infectious disease specialist at Beth Israel. He prescribed antibiotics, but he told us it could take weeks or even months to eradicate this infection.
That was time we didn’t have. For however long the cryptosporidium lingered, there could be no further treatment of Jim’s cancer. And no Whipple procedure. Climbing that mountain might have cost us everything.
Only it didn’t. Luck came now in the form of Jim’s intestine clearing of the parasite in record time. As soon as he was better—back up to 135 pounds, amazingly, and feeling good after a six-week break from chemotherapy—we flew back to Boston for another scan.
This time, the news from Dr. Moser stunned us. The tumor had shrunk by 50 percent. He was ready to operate.
54.
We spent the day before the surgery at Fenway Park, and the Red Sox won. After, at a bar across from the ballpark, we had oysters to celebrate, and when we finished our usual dozen, we ordered another dozen, and another dozen after that.
“It’s an odd thing,” Jim said. “Tomorrow I’m electing to have a surgery that will gut me like a fish. I know it’s going to be a long time before I feel this good again, if I ever do. Right now all I want to do is go off and live my life with you instead of checking myself into that hospital.
“But this is the last train out of the station,” he said. “I’m going to be on it.”
55.
We were at the hospital before the sun came up. I stayed with Jim for as long as they let me, while they did basic tests and got him ready.
Dr. Moser came in to say hello—wearing his scrubs now. “There’s a point in the surgery around the three-hour mark,” he told us, “when we’ll have Jim’s abdomen open and I can see what’s going on in there. Sometimes, when you’re doing a Whipple, this is the moment you discover that the cancer’s more advanced than you thought, and you can’t move forward with the surgery after all.”
And if that happened? What then?
“We sew him up and send him back to the ward. We’ll know we tried.”
As always, Dr. Moser was confident. He told me he’d get a nurse to call me from the OR when he got to that point, so I’d know if they were going forward with the surgery. “I’m feeling good about this one,” he said.
After I said good-bye to Jim I headed to the waiting room, knowing it would be a very long day. The room where I’d spend it—if luck were with us—was fluorescent-lit, lined with hard plastic chairs that faced each other, with a scattering of magazines and a reminder on the wall concerning the importance of hand sanitizer. On the opposite side of the room, a family had gathered—a man in his early sixties like me, and four young people around the ages of my children and Jim’s. They were engaged in cheerful-sounding small talk—about their jobs, the Red Sox. As for me, I didn’t feel like talking to anyone.
I had brought a book with me but I kept reading the same sentence. The family across from me played cards.
Around four hours from the time I’d settled in for my day of waiting I got a call from one of the OR nurses. “We reached the tumor,” she said, as a person might when describing a war maneuver carried out behind enemy lines. “Dr. Moser’s going in.”
Hours passed in which I mostly sat, unable to read my book or eat anything. On the other side of the room, the sixty-something-year-old father and the young people with him were unwrapping sandwiches from the hospital cafeteria and laughing. The twenty-somethings were sharing funny stories about their mother—the kinds of stories my children might reminisce about (in my case, this would involve how messy I was when cooking, my habit of acquiring musical instruments I never learned how to play, my bad driving). It was the kind of talk a family engaged in when idly passing the time, with not a whole lot of stress going on. If not for the institutional décor, you could have thought they were enjoying a family reunion.
From my side of the room, there was nothing but worry. My own children and Jim’s were nowhere near. Friends had volunteered to sit with me, but I preferred to be alone, I told them. I did have my laptop, and found a surprising measure of comfort reading the messages that poured in on my Facebook page from people I’d never met who’d been following our story over the months, telling me now that they were praying for Jim. From Japan and Colombia and Australia and France, they wrote to me. “We’re with you,” they said. Perhaps they were. I may even have felt it.
Dinnertime now. In the waiting room, the family across from me had brought in food, but I wasn’t hungry. The various members of the family were just opening their Styrofoam containers when a woman approached them, bent to speak with the father, a hand on his shoulder. The daughter leaned in, and the son, and the two others I had come to realize from our many hours sharing this room must be their partners.
Suddenly, the room was spinning. The food scattered. The father sat there, hands to his face, shaking his head, but the children were weeping, then wailing. Someone stood up, staggered, dropped to the floor. They all rushed out then—food wrappers and bags abandoned.
It could happen that swiftly, the end of life as we knew it. But time could also creep so slowly that even a minute seems endless.
It was close to midnight when the call came, this time from Dr. Moser himself. “This was the toughest Whipple I ever performed,” he said—adding, with his typical brand of self-assurance, “there are probably only five surgeons in the country who could have performed this one.” He being one of them, of course.
They got the tumor, and took thirty-eight lymph nodes, he told me. It would be another few days before the pathology report, but things looked good so far.
Then I made my way down the hall to the recovery room and found the bed with Jim in it, almost unrecognizable from that person I first met, not even four years earlier, at that restaurant in Marin County, where I kept waiting for him to suggest that we order something and he never did.
For so long, I had been fearful of getting too close to this man, letting him love me, letting myself love him back. And even when I did, I had been so reluctant to put that big diamond on my finger, and more so, to make the commitment it symbolized.
Romance was one thing. Marriage another.
Now there were tubes coming out of him. His eyes were closed, his mouth open. Gone, the dashing hero at the wheel of the Boxster, the sharp dresser who liked to meet me after work in the city for seafood at Sam’s. Once such a handsome man, he looked a hundred years old right now, but he was alive. I took my place by the bed.
“I’m his wife,” I told the nurse—wife, a word it had taken me a good year (also a bad one)—to utter as I did now.
“He’s very confused,” she said, adjusting one of the monitors, the beeping machines, the bags of IV fluid. “He keeps saying the surgery was a failure. Maybe you can convince him it wasn’t.”
Jim was heavily sedated still, but he opened his eyes as I approached the bed. Seeing him lying there as he was now, a person wouldn’t have thought he could say anything, but he did.
“I’m screwed,” he told me. “
I’m totally screwed.”
I took his hand. Stroked it. Bent over close to whisper in his ear.
“You’re OK, Jimmy,” I told him. “Dr. Moser says it went great.”
“I’m screwed,” he said again. Almost angry this time, that I didn’t believe him.
“That’s not true,” I said. “You need to believe me.”
Later, we would joke about this. When the anesthesia had worn off and he was in his hospital bed, sitting up partway, with his glasses on and his Rolex, his Kindle at his side. But that night he looked me straight in the eye with a ferocity I had never experienced from him before—he, the man who had never spoken to me with anything but tenderness in his voice. “If you’re lying about this, I’m going to sue you,” he said to me.
“You’re going to be OK,” I said. “You have to believe me.”
56.
The operation had lasted fourteen hours. Over the course of this time Dr. Moser had removed the tumor, but this was not the whole of it.
Along with the tumor went a part of Jim’s pancreas. Also his duodenum, also his gall bladder, part of his large intestine, part of his stomach. These were reconnected in a manner that bore no resemblance to the original design of his or anybody else’s digestive tract. In addition, because of the particular placement of the tumor in Jim’s pancreas—the way it had wrapped itself around a vein (there I went again, seeing the tumor as some malevolent force, imbued with human qualities, central among these an active intention to destroy my husband), the vein itself had to be removed. To replace it, Dr. Moser had harvested—harvest, there was a word for you—a replacement from Jim’s neck. His jugular, in fact. In other circumstances, this itself might have qualified as major surgery. As it was, the jugular transplant was the least of Jim’s issues.
The day after the surgery, when he was out of intensive care, Jim could sit up a little, though he was still heavily medicated and it would be days before he could eat regular food. We had been staying at the home of our friends in Brookline—playing cards with their sons, staying up late with Jason talking about politics and the law. But now I moved into the hospital. The nurses set up a cot for me next to Jim’s bed, though later, after the first few days, I abandoned the cot and slept beside him in the hospital bed.
Because my babies had been born at home, I’d never spent a night in the hospital, and except for an outpatient surgery one time, I’d never experienced a major health issue. I had steered clear of doctors’ offices, never even went for checkups. But that June the hospital became my world.
It’s a whole other way of living. Always, in the past, I’d spent as much of my waking hours outdoors as I could—particularly in summer, and particularly summer in New England—but now whole days went by sometimes that I didn’t set foot outside, or even know the weather. We lived not by the sun or the stars that we never saw anymore, but the rhythm of life on the sixth floor of Beth Israel: waking at five or six—though who was to say what getting up meant anymore? We were up every three hours through the night, when the nurse came in to take Jim’s vital signs and hook up a new IV of pain medication. I learned to put a piece of cloth over the computer that sat mounted on the wall across from the bed, glowing blue through the night, with Jim’s medical records—his long list of prescriptions, notes from the medical team—displayed for whichever nurse was on duty.
All night long we lay together, in a state close to but not completely the same as sleep, as shadow figures moved in and out of the room performing their tasks. Sometimes it was taking Jim’s vital signs, sometimes the administration of painkillers. Always that light glowed, and I could hear the sound of the air that pumped through Jim’s special mattress, almost like breathing, or an endless series of sighs.
At seven the night nurse left and the day nurse took over. Then came the orderlies, the dietician, the women bringing in the trays of broth and Jell-O and later, Boost. Not yet on solid food, Jim was dropping weight fast, but we’d been prepared for that one. Some days there was a problem with the incision—fluid leaking, a repair required. Some days there was an issue with his drains. Always, there were issues with digestion. That part never changed, and never would.
As weeks passed—Jim discharged from the ward, admitted again, discharged, admitted—we came to know all the hospital regulars, the nurses and the doctors, the medical students on duty when Jim needed more painkillers, or a drain appeared to have come out, and I rang for help at three A.M., or four, as I often did. They wandered in from the dark hallway and took their place by the bed. Daytime and nighttime blurred.
Among the nurses, we had favorites, and it would be small things as much as large that determined this. Some understood better than others how to lift Jim’s head so it didn’t flop back on the pillow, or they’d show particular care removing his socks. There was an art to taking blood, particularly from the arm of a person as thin as Jim, whose veins had been pierced as often as his. The greatest art, perhaps, was maintaining a presence of quiet, benevolent invisibility. Jim and I spent nearly every hour of every day together, but hardly ever got to be alone. I longed for that.
Over our days in the hospital—that summer, and for all the hospitalizations I didn’t know about yet that lay in our future—we talked a lot with the nurses. One of Jim’s nurses had been a punk rock musician on the Lower East Side of Manhattan back in the early days of CBGBs (but went to nursing school when he realized he’d have to come up with college money for his kids). There was a Filipino woman, a nurse’s aide and single mother, working nights and going to school days to be a full RN; the traveling nurses, who moved from city to city, touching down at a different hospital every three months; the young Jamaican woman—she’d be on leave soon—pregnant with her first child, whose nickname for Jim was “Handsome.” More than the doctors, it was these nurses whose presence determined whether a day was good or frustrating.
At some point over the course of the morning, the doctors would make their rounds, and I was so anxious never to miss this moment that I didn’t leave the room for anything until they got there. This visit would include half a dozen medical students with Harvard insignia on their coats, along with an intern and resident, probably. Dr. Moser, the man we always wanted to hear from, would lead this group, and when they got to Jim’s room—our room—they’d form a semicircle around the bed, listening while the surgeon examined Jim’s abdomen and spoke about his case.
We got used to the strangeness of having his body serve, for the assembled group, as the object of daily discussion and instruction. Dr. Moser would point out the incision, the positioning of Jim’s drains, the particular issues of his case. There was a long scar on his neck for instance, from where the vein had been removed. This had altered his voice, though the doctors were hopeful that would be temporary. Meanwhile, he’d need a surgery to inject Botox in his vocal cords. And possibly another vocal surgery after that. Jim also had a hernia—not atypical for a Whipple patient. And there were questions of fluid retention, possible infection (always a fear). There were so many things that could go wrong, we learned. So few that could go right.
Jim’s daughter, Jane, rode the bus from Brooklyn to spend a day with him. She had recently become engaged, and Jim was happy about that. We talked about when the wedding might be—not till the next year, it turned out. She was not a person who subscribed to the concept of having her father give her away, but he would be there, of course.
He’d be stronger by then. He’d have put on some weight. I knew how Jim loved wearing his tux, but this would be a Brooklyn wedding. No tuxedo. It would have needed major alterations now anyway, so just as well.
I had thought at first that I’d use this time to explore the museums of Boston—the Isabella Stewart Gardner and the Museum of Fine Arts, both within blocks—but apart from occasional lap swims at the Brookline Y, I discovered I didn’t want to leave Jim. Mostly, we spent our days side by side in the bed together, reading and working on our laptops, watching movies, checking the polit
ical news. Donald Trump had announced his candidacy for president, but nobody was taking this seriously.
Our world got smaller, with occasional bulletins from the outside. The Giants were having a bad year. The Red Sox were having a good one. The guys in Storkzilla wanted to know when Jim would be home. They were short a bass player. For a while, there was talk that Jim might be back for a show in July. Then it was August.
The summer dragged on. I lived in the hospital and dreamed of writing at my desk in Hunsaker Canyon, dreamed of swimming in a lake instead of a pool. Sometimes I asked myself what had become of my life. It was not a question Jim ever asked about his own. Not out loud anyway.
57.
Now comes a critical moment in our story, though how critical did not become apparent until much later. This may actually have been the moment when two people more clear-eyed than Jim and I were capable of being could have recognized how everything would turn out, though would I have wanted to know this? Probably not.
Five days after the surgery, Jim was allowed to go downstairs and sit outside on the bench in front of the hospital. It was early June in Boston, and the tulips were out, the sun was shining, and it was warm enough that Jim wore nothing more than his hospital gown, though for modesty’s sake he had put on a pair of sweatpants underneath. Later, as the weight kept falling off of him, I would have needed to bring a pillow down with us for him to sit on, because the bench was hard for a person with so little fat on his bones—little, and then none. But that day he looked like himself still. His hair had come back, and he had grown a beard, which looked good on him. I joked that he now resembled that devastatingly good-looking guy we used to see in Dos Equis advertisements, The Most Interesting Man in the World.
The Best of Us Page 20