There is a history of secrets a couple shares, and short as our time had been, we’d known some good ones. Now I found myself wondering what happened to those secrets, if the only other person who knows them beside yourself ceases to exist? Or he’s still there, but with his memory fading.
Here we were, those same two lovers who lay naked in a Budapest hotel room sixteen months earlier, a little drunk on Hungarian wine, snapping pictures of their reflections in a ceiling mirror over the bed. I was sixty-two years old now, wearing a hospital gown over the same T-shirt I’d had on for three days in a row and a pair of Jim’s sweatpants from the days when he’d belonged to the Olympic Club. There was an inch of gray at my roots, it had been so long since I’d seen a hairdresser.
“You are the most beautiful woman,” Jim said to me, cleaning crumbs off the front of me as I could always count on him to do.
Beautiful to him, anyway.
He was so thin now I could see the outline of his skeleton. Sometime over the course of the last few days his wedding ring had fallen off his finger. We had torn the bed apart but couldn’t find it.
“Now the nurses might think they have a chance with you,” I told him. But that kind of joke never amused Jim.
“I need to get a new one,” Jim said.
“Ring or no ring, doesn’t matter,” I told him. “You are the best husband I ever had.”
85.
Mutation. Change of antibiotic. Mutation again. Revision of antibiotic. (Followed by insurance application. The wait for approval of some new and no doubt wildly expensive new drug.)
In between mutations came drain insertions. Drain revisions. Endoscopy surgery. Three surgeries in a single week one time: endoscopy, drain adjustment, endoscopy.
And here were the stakes: Until the infection was cured, we could not get a scan to check for a recurrence of the cancer. If there were a recurrence, this would be bad news (terrible news, actually; the worst) but we’d be ready then with our next phase of attack. I’d get to work on filling out applications for clinical trials. Never mind in what city they might be taking place, we’d go there.
No one had told us the cancer was back. But I knew the doctors were worried. And already, I was preparing for it.
Jim would get more chemotherapy, of course—no longer with the same goal we’d had when we embarked on adjuvant chemotherapy after the surgery: to prevent recurrence. Now the goal would be simply to keep the cancer at bay for as long as possible.
“How long before we can get the infection under control?” I asked Dr. Kelley.
She looked at me a long time before answering this one. “I hope we can get the infection under control. But it’s not always possible to do that.”
Actually, she told me later, out in the hall, she had never known an infection as extensive as Jim’s to be successfully eradicated. Not to say that this couldn’t happen. She just hadn’t seen it.
The great surgeon for endoscopies was Dr. James Ostroff. Like Jim, he was an amateur photographer. The corridor leading to the room where he operated was lined with photographs he’d taken, mostly on safari in Africa. Pacing the hallway as I did so often now, I’d study Jim Ostroff’s photographs and imagine another way things might have gone: that this hallway would have led to Jim’s law office in San Francisco and the photographs might have been those taken by my Jim, not this other one. They were both Nikon men of roughly the same generation. One performing endoscopies. The other undergoing them.
Jim—my Jim—kept his Kindle at his bedside at all times, but he was starting to have a hard time reading. He always seemed to be looking at the same one page.
“I feel so diminished,” he said. Even the Politico.com articles he was always reading—featuring Donald Trump more than either of us had anticipated—no longer seemed to interest him as they once did. When the doctors asked questions now, they addressed these questions to me, though when this happened I stopped them. “Talk to my husband,” I said.
“I’m becoming stupid,” Jim said. “Besides all the rest of it, having cancer is just so damn humiliating.”
Mostly, over those weeks, I slept at the hospital—for days on end, often—but other times I got up at two thirty or three A.M., around the hour the night nurse came to check his vital signs. I had figured out a trick about parking fees at the hospital. The lot across from Parnassus cost thirty dollars a day, and sometimes I’d leave the car there for three or four days at a stretch without exiting the lot, which would have left me with a bill of well over a hundred dollars. There were discounts available for families of patients, but who had time to make a trip to the DMV?
So you told the man at the gate you couldn’t find your ticket. That way the most they ever charged you was for one twenty-four-hour period. Every time I pulled that one off, I allowed myself a small sense of triumph. A minor victory in an avalanche of losses.
Even in San Francisco, there were almost no cars out at three A.M.—a few Uber drivers, a few policemen. This made it possible to make the trip from the hospital across the bridge in half an hour instead of the hour and a half it took in the daytime. Or longer.
Home again, I climbed into our bed for a few hours’ worth of the kind of sleep a person never experiences in a hospital, where a computer monitor glows through the night, and you can always count on some nurse or orderly coming in the room every hour or two, and voices calling out in the night, “Help me!” or sometimes just moaning.
Next morning I woke up early, took my shower, changed my clothes, picked up our mail. Sometimes, before heading back over the bridge, I stopped at my friend Karen’s house first. I always knew I could walk in the door and fall into her arms, and for a solid five minutes, I might just stay there, crying. No need to say anything.
When I could, I got back to Parnassus Hospital in time to bring Jim a cup of good Peet’s coffee to have with his breakfast, though when I didn’t, our friend Bridget—a palliative care counselor working on the same floor where Jim was, who had been in our lives as my son Willy’s best friend since she was thirteen—stopped by to check on Jim and bring him the good coffee. Long ago, during that hard year I spent trying to be a good mother to my two adopted Ethiopian daughters, it had been Bridget, more than anyone else, who had helped get us through the days. At the time, I had called that experience the most painful of my life. Now here she was to help get me through a harder one.
Bridget’s job was working with dying patients, but Jim had not been identified as one of her clients, and did not see himself that way. In the hallway outside his room, on her breaks, Bridget and I talked a lot about that.
Jim needed to believe he would survive, and because of this, I needed to be, for him, the partner who supported that dream. I wanted him to have hope, but as my own hope faded, a sense of loneliness overtook me. Jim was the person I always talked to about the hardest things. But how could I talk to Jim about this one?
He was not getting better. The virus kept mutating. Every day or two, when the doctors made their rounds, they’d erase the name of the previous bacterium from the white board and write down the name of the new one: another organism onto which I projected the malevolent personality of some supervillain constructed by Hollywood, to wage war against my husband from within his own body.
This called for different antibiotics every day or two. New applications for insurance approval. New lab cultures. New visits from the infectious disease team and the medical students who followed after them, fascinated with Jim’s case. Once, over a space of thirty-six hours, the bacterium mutated twice—so fast that by the time one culture came back from the lab, and we got insurance approval for the new drug to treat it, we were on to the next.
For a while it was difficult to understand why it was that nobody seemed concerned with cancer anymore. All they talked about now was the infection. Jim had been due for another CT scan back in February, but because of the infection, it had been postponed twice. None of the doctors seemed to view the scan issue with particular urgency.
Then I came to understand why. The only reason we weren’t discussing cancer now was because an even greater threat existed. If the doctors could not eradicate the infection, it didn’t even matter about the cancer. The Pseudomonas would get him first.
There was no way to identify the presence of cancer while Jim’s abdomen was filled with infection. Those abscesses in his liver would have concealed whatever else might be present. And gradually I came to understand what the most likely reason was for why the infection had taken hold in the first place, the knowledge each of our doctors carried, walking into Jim’s room, but never spoke of. More likely than not, a tumor was growing—or many of them—and it was blocking Jim’s biliary ducts.
We weren’t dealing with two separate problems. Everything came down to those cancer cells, the ones the Whipple surgery had left behind. If so, this would be Stage 4 cancer, metastatic cancer—the kind that can no longer be cured.
86.
One day, sometime in the fourth or fifth week of our time at the hospital, an e-mail arrived from the editor of the travel magazine for whom I’d written my Chile story. He had an assignment to run by me.
He was writing to tell me that Travel + Leisure had instituted a program of luxury trips, personally tailored to each individual traveler. He wanted to know if I might consider going on one of these trips and writing about it for the magazine.
An all-expense-paid luxury trip for two people who’d spent their last forty days in a hospital? If you were paying for a trip like the ones my editor had suggested to me, the price tag would run somewhere between eight to twelve thousand dollars per person, but of course the magazine would pick up the tab and pay my fee on top of that. And one more thing: My editor was familiar with Jim’s photography from images I’d sent him of our Chile trip and the New England road trip story Jim and I had worked on together back when he’d edited a section of the New York Times three years before.
“We’d like your husband to shoot the photographs,” he wrote. “Why don’t you take a look at our offerings and see if any of these interest you?”
For a moment I just sat there on the bed, Jim beside me, half asleep—two drains coming out of his abdomen and the ever-present IV in his arm, his arm draped across the sheet, thin as a child’s, his feet elevated to help bring the swelling down.
I clicked on the link to the trip offerings.
There was the world, laid out on my computer screen: hiking in the Dordogne, horseback riding in Mongolia. A luxury train ride across India—two full weeks. Diving in the Grenadines, sailing in Greece. Kyoto cherry blossoms. The Great Barrier Reef. Bhutan.
The day nurse was just finishing up with her blood work when the letter from the travel editor arrived. I set my laptop between us and touched his cheek.
“Look at this, Jimmy,” I said. “You’ve got a photography assignment.” His dream.
We spent the whole morning side by side in that hospital bed deciding where we should go. We liked the Grenadines a lot, and Bhutan. Then there was Croatia. But all things considered, we chose Italy.
I look back on that day now—the hours we spent, considering our next expedition—and wonder if Jim ever believed we’d make it to one of those places. Or to anywhere outside the state of California together, ever again. If so, we had engaged in a mutual pact, to allow for the dream that we would board a plane one more time, for one more magnificent adventure.
87.
Two more weeks passed. Jim never spoke about leaving the fourteenth floor anymore. Highlight of the day now: hospital rounds, when the resident and a group of interns and medical students stopped by. They all carried cards with their photograph on the front. I had accumulated a collection of a couple of dozen by this point, laid out on the bedside table like baseball cards.
Mostly now, the doctors we saw were infectious disease specialists and internists, but Dr. Katie Kelley, Jim’s oncologist, checked in too—by telephone generally. Then one day she showed up in person.
In the hallway after—where I had walked out with her after she finished her visit with Jim—she explained to me what she had not said in the room. She herself had recognized that there was information Jim wanted to hear and other information he’d just as soon not get into. What she had to tell me that day fell into this category.
“Back when I first met him, Jim told me if there was ever news like this, he’d prefer that I just tell you,” she said.
The cancer was back. We had lived through a scare the summer before that had turned out to be a false alarm, but this time it was clear, and Jim’s CA19-9 numbers supported Dr. Kelley’s conclusion. The infection still made it impossible to perform the scan, but she knew now what the scan would tell her, if it were possible to perform one accurately. It was cancer that accounted for the bile duct obstructions, the liver abscesses, the weight loss so relentless that it no longer mattered anymore how many calories Jim consumed, how many shot glasses I filled with MCT oil. Trying to put weight on Jim was like pouring water into a bathtub whose drain is open.
This was what Stage 4 cancer looked like: the swollen belly, the sunken eyes, the muscles eaten away regardless of whether, like Jim, the patient somehow managed to get himself up off the bed to perform his four pushups. (His three. His two …)
Stage 4. There is no Stage 5. Dr. Ostroff could open up a duct for a week or two, but sooner or later—and probably not much later—that duct would close up again and the reason it would was because there were cancer cells inside and they were multiplying. The abscesses would not dry up because there was cancer there too. Cancer everywhere.
More than the cancer, Dr. Kelley was telling me now, out in the hallway, it was likely that the infection would be the thing to kill Jim. But cancer, same as always, was at the root of it all: those microscopic cells they didn’t get with the Whipple the previous June, or with adjuvant chemo, after, with their hard little shells and their ready ability to size up whatever form of chemotherapy you threw at them. In my mind’s eye I could actually picture those cells; I could even hear them. “You already played your Folfox card,” they were shrieking. “We’ve got that one nailed. What do think you can pull on us next that we don’t have figured out already? Do you actually believe, you fools, that there is anything you can throw at us as powerful as we are?”
There wasn’t. No drug left to try.
Katie was probably the age of my daughter, and a very kind person. We called her Katie, not Dr. Kelley. She sounded very sad as she spoke to me.
As for me: I had known this news already, really. It was almost a relief to hear someone say, out loud, the words you have most dreaded. To get it over with.
I stood there in that fluorescent-lit hallway I had come to know as well as my own home, in possession of more information about my husband’s body—his future, or lack of future—than he possessed himself. It seemed unfair to be talking about Jim this way, without Jim getting to be part of the discussion. But Jim held onto the belief that he could get better, and he counted on me to be the source of his optimism. Every time another hard thing happened, he looked to me now to say what we were going to do about it—and I always had something up my sleeve. You could call this denial, and so would I, but it was the one thing that got him through the day.
Jim and I did not discuss his death. I had made the decision, based on everything he had said and done up to then, that no matter what, I needed to offer him some small measure of hope. Smaller all the time, but he needed that.
Outside our hospital room now—Jim on the other side of the door, waiting for me to climb back into the bed with him—I ran through our options.
Months ago, back when I prayed we’d never get to this place but knew we might, I had prepared for this conversation by talking with pancreatic cancer patients we knew who were holding the recurrence of their cancer at bay with infusions. Back home on my desk I kept a file of clinical trials for Stage 4 pancreatic cancer. I never wanted to be caught short. If it came back, I had told Jim, I’d
have Plan B in my back pocket. Or Plan W, more like it. Plan Z.
There was a clinic in Arizona one of the men from the pancreatic cancer breakfast club had visited recently. A place in Texas where they had an experimental treatment my friend Barbara was undergoing.
“We’ll start chemotherapy soon, right?” I asked Dr. Kelley. “Gemcitabine maybe?” For eighteen months, I’d been a student of pancreatic cancer and its treatment. Jim and I both knew the story with Stage 4—that once cancer came back, there the prospect of a cure was off the table. All we could do now was buy some time.
She shook her head. A cancer patient with an active infection did not qualify for chemotherapy. For a patient in Jim’s situation, with an immune system compromised by antibiotics, one dose of chemotherapy could be fatal—not that his cancer was anything less.
Katie stood with me in the hallway as I ran through the list I’d kept of things we hadn’t tried yet. Except we’d tried all of them now. No, no, and no. I’m sorry.
The next question was the hardest, but I asked her. How much time did she think Jim had left?
A couple of months maybe, she said. Maybe a little longer. She’d be surprised if Jim could hold on until the fall.
Dr. Kelley must have delivered news like this more times than she could count, but it appeared to me, watching her face, that it was still hard for her to say these words. However many times she’d had to tell a patient she had nothing more for him, she had not succeeded in sealing off her heart, and I doubt she wanted to.
She was a mother of three young children. One time in her office she’d told us about her father, who had tended the bears in state parks of the Sierra all through her growing-up years. When Jim spoke of the Owens Valley, Katie told us she knew it well. Sometimes, when she called us from home on a weekend, or an evening, I could hear a baby’s voice in the background.
“I’m just so sorry,” she said again, tears in her eyes.
The Best of Us Page 27
