He gave us a list of liquid vitamin supplements—C, D, Glutathione, B12. He told us about something called ProBoost formula to put in Jim’s drinks. We should order organic cannabis-leaf juice in frozen shots. One daily. Buy bone broth.
“There’s one other thing that sometimes provides impressive results in combating infection,” he said. “You might think about a hyperbaric chamber.”
Two days later, we were there. It was an hour’s drive from home (operators of the closer chamber having turned us down), and the cost, after the first consultation, was $425 a session. For a person with Jim’s level of infection, the visits should take place daily, for twelve weeks straight, minimum.
Never mind the money. Never mind that the chamber Jim would lie in for treatment—with its state-of-the-art sound system and overhead DVD player—was smaller than the MRI machine that had led to a major attack of claustrophobia. Still, Jim was game to try.
We paid just three visits to the hyperbaric chamber—each of them, because of the drive and the traffic, occupying most of a day. Each time Jim emerged from the chamber I asked him if he’d felt anything. He shook his head. Other than claustrophobia, nothing.
Maybe it was too soon for results, we said. They’d told us Jim needed twelve weeks. In Jim’s calendar now, this was a lifetime, or what was left of one.
The cost of the chamber would not have stopped me, but the cost of our days did.
The third time Jim emerged from his ninety minutes in the chamber, he did not stop at the desk to sign up for the next round of treatments. Out in the car, he took my hand, or I took his.
“Let’s just go home,” he said. “I want to take you to the Owens Valley.”
98.
Jim’s doctors all advised against this. The abscesses in Jim’s liver left him highly vulnerable to sepsis. It could happen at any moment, and when it did the effect would be like a wildfire in a drought-stricken forest.
“You haven’t seen what happens when a person in Jim’s condition spikes a fever,” Dr. Kelley told us—though that day at the airport in Guatemala City, standing outside the men’s room when Jim wandered out in a daze, had provided a glimpse. “It can be terrifying, more for you maybe than for him. If it happens, you will have very little time to get him to a hospital.”
There were hospitals in the Eastern Sierra, I pointed out. The BMW went fast. Then came another idea, wilder even. Among Jim’s friends at The Family club was one—a former fighter pilot in Vietnam—who owned a helicopter company. I wrote to Jim’s friend, Steve, to ask if there might be a way, in an emergency, for him to pick us up. He wrote back, yes.
Jim’s son Kenny asked if he could come with us, and though this wasn’t how I’d pictured the trip, I asked Jim what he thought, and Jim said OK.
“Just so long as my dad doesn’t do the driving,” Kenny said. “I don’t want to die on the highway.”
Hearing this, Jim shook his head. Driving that car was part of the point of the trip, and how much traffic would there be anyway in the Sierra?
In the end, Kenny chose not to join us. I was OK with Jim taking the wheel as long as he said he could. He would never let anything happen to me in the desert or anyplace else.
We had taken many road trips in our days together. None like this, though. I doubt many people have.
This time there would be no hiking. We would take in the mountains through the windows of the car, mostly, but through the window was good enough. In the back seat, I set up a special cooler I’d ordered online, connected to the cigarette lighter, to keep a four-day supply of antibiotic boluses chilled. Farther back, we set the IV pole. In the glove compartment, a full supply of Creon and Dilaudid, and a little marijuana, though Jim would go easy on those when he was driving.
In those first days after he bought the BMW, Jim had loaded the sound system with hundreds of songs—a vast collection with all kinds of music. But for this trip he only wanted to play the Beatles. Early Beatles mostly. As we made our way south to Tracy, then east toward the desert, we listened to their young, joyful voices: the Beatles as they were before the Maharishi, before Yoko, before the breakup, before Mark David Chapman and George’s cancer—the old uncomplicated songs sung by those four glorious boys, younger than any of our sons were now.
“She Loves You.” “Help!” “You’re Gonna Lose That Girl.” “Norwegian Wood.” “Michelle.”
Somewhere around Bakersfield, we switched briefly to the Rolling Stones—early Stones—and a couple of times he clicked over to some other artist from our youth. Simon and Garfunkel took us onto Highway 317. “Stairway to Heaven”—one of the first songs Jim had learned on his bass—was playing when we entered Tehachapi.
But we kept coming back to the Beatles, and there was no need to ask why they were the ones Jim wanted to hear that day. The Beatles were our youth. They provided the soundtrack to our biggest romantic hopes, our first and most enduring ideas about love: that love was all you needed. And in the end it seemed to me that this was so.
Sometime around Visalia, we shifted over to the Beatles’ middle period. The White Album. By the time we reached Bishop we were ready for John on his own. Imagine. I sang along.
In the town of Lone Pine, we checked into the Dow Villa Motel, with its sign out front telling us the names of all the movie stars who used to stay there when they came to film Westerns. John Wayne. Robert Mitchum, Jimmy Stewart. All dead now. We climbed into bed and Jim took out his Edward Abbey book, reading out loud to me about desert flowers and trees until we fell asleep.
In our old road-trip days, we would have risen early to get out on the trail. Now there was an infusion to take care of first—an hour and a half to sit and watch the antibiotics drip into the PICC line. Jim moved so slowly these days that even after the infusion was finished, it was ten thirty before we got out to the parking lot.
“I’m going to show you a good time, baby,” he said. We drove to a diner where we ordered pancakes—the gluten-free plan abandoned now that every food seemed equally difficult for Jim to digest—augmented with New Hampshire maple syrup I’d brought from home and carried in my purse. From there we drove to a place called the Alabama Hills and then to the abandoned internment camp at Manzanar, where we got out of the car and—slowly, slowly—made our way down the path the interned Japanese must have walked seventy years earlier, building their Zen gardens in the desert, playing baseball among the cactus and scrub pine. Manzanar was empty of all human habitation now, but ten thousand people had lived here once. Nothing remained but the remnants of a few gardens and a few graves and a string of paper cranes left by a recent visitor.
On the road again. We had always been good at that. There was a huge, powerful telescope set up in the desert that Jim wanted to see, though it turned out that only authorized personnel could get in to visit there. We went to the ghost town of Bodie, but not to the Ancient Bristlecone Pine Forest where Jim had taken some of his favorite photographs. Too far. We had only four days’ worth of antibiotics with us and we had to get home before we ran out. The clock was ticking.
On the edge of Mono Lake—that other-worldly landscape—after his late-afternoon infusion, Jim set up his tripod to catch the golden hour over the water. Next day we drove to Mt. Whitney one last time, the place where Jim had set out on his epic one-day climb back in 1989 to mark the end of his marriage to his children’s mother. He had wanted to put himself through something very painful that day, endure punishment. Twenty-five years later he had yet to absolve himself.
He told me a story. When his children were little, Jim brought them to this place—a rare and brave choice for a single father of three, the youngest of whom had yet to reach her fourth birthday. These camping trips would have born little resemblance to the ones his parents took him on during his own lonely childhood years, and that was the point, probably. For Jim, it would have been important to get out onto the trails. To show his children not simply a campground, but the Sierra.
On one of these tr
ips, when Jane was only three, she’d fallen on a rock and cut her head. The blood was pouring out of her—cuts to the head always the worst for bleeding. Jim had picked her up and ran with her, over two miles—her two older brothers following—all the way back to the car, and from there to the hospital at top speed. He told me he would never forget holding his daughter as he raced down the trail, her body pressed against his chest so tight he could feel her heart pounding, as his was too, no doubt. She was all right—needed only a few stitches—but the memory of his terror that she might not be OK had never left him.
There was one more stop on our road trip, and Jim had saved it for our last day.
Back in the sixties, his father had bought a piece of property in a place called the Olancha wilderness. There was no water on this land, no electricity, and though there were eighty acres, the shape of the tract—a long, narrow strip—rendered it nearly useless for anything but one activity: target shooting.
When Jim came here with his own children, he’d set up tin-can targets as his father had done with him, when he first taught Jim how to use a gun. Now, more than fifty years since the first time he’d fired a shot, he was going to teach me.
Back at home, he had taken out his old Beretta in its case and set it in the back of the BMW next to the IV pole. We had stopped at a sporting goods store to buy earplugs. Now, after pulling the car over along a deserted stretch of highway, he lifted the case from the back and took out the gun.
I had wondered, when we reached this spot, if Jim could make it to his land. It was set back from the road, accessible only by foot. Slow and steady, we got there, though I had no idea how Jim could tell that it was this particular patch of dirt that belonged to him—this spot, amid the vast expanse, with its scrubby outgrowths of dry grass and rock outcroppings as far as you could see.
I had never once fired a gun, but he showed me how. He had set up a row of old cans we’d found—a tin plate, a piece of cardboard—and told me how to aim, and to hold my breath as I squeezed the trigger to keep my arm steady, but my bullets never touched the target.
Then it was Jim’s turn to shoot.
When we set out on our long-awaited Owens Valley pilgrimage, I had considered the possibility that Jim might die in this place. When the doctors spoke of the risks of our making the journey—the infection suddenly going septic—I had privately concluded we had nothing to lose. There were worse places for a person to die—particularly Jim—than in the shadow of Mt. Whitney.
As I handed him the gun, I considered a second possibility. As bad as things had become for Jim, it seemed pretty clear now that they were only going to get worse. He could still stand up, still walk, still drive, still kiss me, still make me laugh. Better maybe to call it quits while this was so. He could end it here, if he chose. The whole sorry mess.
Already, one time—during one of the rough bouts I could no longer distinguish from all the other rough bouts—he had said to me, “Maybe it’s time to go to Oregon.” He was talking about assisted suicide. But if you’re holding a shotgun in the Eastern Sierra desert, you don’t need a trip to Oregon. As terrible as it would have been to watch him fall to the ground in that patch of dirt and scrub, it would not have been the worst thing.
Except that Jim would not have wanted that for me, or for his children. When he took aim, it was for the target. Five shots only, every one straight into the center of each tin can.
“That’s enough,” he told me. Then we drove home.
99.
It was May now and we were sharing our nightly dinner together, the ritual I had held on to as so much else had fallen away. By this point I had lost much of my enthusiasm for cooking. Jim so seldom was able to eat more than a few bites of whatever dish I prepared, and all the months of FODMAP diet, macrobiotic diet, gluten-free diet, ketogenic diet, had taken out most of the joy of eating for me. I had grown weary of all the shopping for food I’d mostly end up throwing out.
Still, we sat kitty-corner from each other every night at the glass table, with the candles lit, and held hands to say grace before the meal. If I wasn’t too exhausted, I still tried to put on one of my dress-up outfits. Jim had lost the taste for wine but still liked sharing a drink with me. Ever since I’d started drinking again, after my three month hiatus, I’d generally limited myself to a single glass a night, but that evening after I finished my first drink I poured myself another. A generous one.
“I’m feeling a little strange,” Jim told me, somewhere around ten o’clock, just as the two of us were climbing into bed. Stranger than the normal amount of strange.
I put my hand on his forehead. I took his temperature. 99.4.
A half hour later, when I checked again, his fever was up to a 99.8. Twenty minutes after that, 100.
I texted a friend of ours, an ER doctor, hoping for reassurance.
“Watch him closely,” Pat texted back.
Tylenol would help. Cold compresses. But for a person in Jim’s situation—a person suffering from chronic infection—we understood the risk of sepsis and that if it happened to Jim, things could get very bad very fast.
At ten thirty Jim’s temperature was up to 101. At ten forty-five it was 102. He was behaving strangely now, saying things that no longer made sense. I was texting Pat while putting my shoes on, and thinking about the two glasses of wine I’d had, the long drive over the bridge into San Francisco.
The memory came to me, of that blue police car light that night in New Hampshire. The handcuffs and the Breathalyzer. Weirdly, the novel I had published that spring concerned the situation of a woman making a middle-of-the-night drive to the emergency room when her son comes down with appendicitis. In that book, the woman gets pulled over and loses her license. Now the woman with the wine in her, needing to make it to the hospital, was me. I could call an ambulance, but it would take twenty minutes to get here.
“Get him to a hospital right now,” Pat told me, when I called again. Jim’s temperature was up to 103.5.
“We’re getting you dressed,” I said to Jim, gulping down cold morning coffee.
I had to help him down the stairs. Once he got there he could not move. I was pulling out drawers, looking for socks. Throwing a sweater over my T-shirt. On the floor, lacing his shoes.
Suddenly, Jim was a different person. No one I knew. He was yelling at me to get away, to stop touching him. Leave him alone. He was talking about planets, talking about clients, cases, motions, Republicans.
“We need to get to the car,” I told him. But he wasn’t moving.
“We have to go to the hospital now, Jimmy.”
He stood there in our front hall, staring at the Guatemalan masks on the wall, saying nothing. When he looked at me it was as if I were a stranger.
“Get your hands off me,” he said. “Or I’ll sue you.”
But I was stronger than he was now, and I got him in the car, gulping more coffee down as I threw on my coat.
At eleven o’clock at night a person could make it from Hunsaker Canyon to UCSF Parnassus hospital in thirty-five minutes, and I did, more or less. When we pulled up to the emergency room I left Jim in the front seat and raced inside for help.
His fever was up to 104 by now. They carried him in on a gurney.
The nurses hooked him up to IV antibiotics and the fever went down, and after a night in the ER—with all the usual exchange of details that I could by now recite in my sleep—he was admitted to the hospital. By the next afternoon he was looking all right and wanting to go home.
“We could keep him here,” one of the doctors said. “But if we do, he might not ever make it home again.”
The infection had taken hold of him, the doctors told us, and it was just a matter of time before the same scenario occurred again. The spiking fever. The delirium.
“What if I hadn’t driven him in when I did,” I asked.
The fever might have gone down on its own. Or Jim might have died. That was how things were. That’s how they would be from now on.
We wanted to go home. But the decision had to be made: What we were going to do if it happened again? Drive back to the hospital? Replay the same awful ride, with the same unresolvable situation in the end? Or stay home and let things play out as they were going to sooner or later. With the comfort of knowing we’d be home when they did?
We chose home.
100.
This was not the first time anyone had mentioned the word hospice to us. But always before, when they did, we had shaken our heads. Signing up for hospice meant that you’d always have access to nurses who would come to your house at any hour of day or night, that you would no longer need to make all those trips to CVS, because your drugs would be brought to you. There were volunteers ready to help with grocery shopping, if you wanted that. You wouldn’t dread holidays and three-day weekends as I had come to do—dreaded them because you could never reach a doctor over that endless stretch of hours that constituted a three-day weekend. In hospice, you could always reach a doctor.
But when you did, the doctor would not be offering a chance of a cure. This would be palliative care only. You could have counselors and volunteers to go shopping for you, a hospital bed if you wanted, though we never would.
But you agreed, when you signed up for hospice, that no more extraordinary measures would be undertaken to forestall the inevitable. There would be no more trips to the hospital, no more antibiotic infusions. No more surgeries to correct obstructions. No further dream of chemotherapy or clinical trials. When you signed up for hospice you acknowledged that you were not going to survive this illness. You would not have to fear some late-night ride to the hospital and all those hours of waiting while they searched for a room. You could stay in your own home. But you knew now you were going to die there.
101.
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