The Best of Us

by Joyce Maynard

  We didn’t say much driving across the bridge. But by the time we got home I recognized what I had to do. Get back into my old research mode, take out the white boards, get back on the phone. There were some clinical trials going on that sounded promising with an immunotherapy drug called nivolumab, a place in Arizona we’d heard about from one of the men in Jim’s pancreatic cancer breakfast group, and a clinic I’d heard about recently in Germany where they treated Stage 4 pancreatic cancer patients with some protocols not approved in the U.S. By the next morning, I would have Jim’s file and his scans on the way to Germany via FedEx.

  Most of all, I wanted to know what they’d have to say about this in Boston. It was too late on the East Coast to speak with anyone there the day we’d learned Dr. Ko’s assessment of Jim’s cancer, but the next morning at six I was on the phone to the Moser team, driving into San Francisco to pick up a copy of Jim’s most recent scan, express mailing the incriminating CD to our radiologist and Boston oncologist, and to Dr. Moser himself.

  Five days passed then while we waited—filling the space with middle-of-the-night episodes of Downton Abbey, candlelit meals neither one of us felt like eating. Finally came the call from Joe Mancias, the radiation oncologist who had overseen the CyberKnife procedure on Jim. Hearing his voice, I gripped my phone tight and pressed it to my ear. Jim was filling the birdfeeder but I didn’t call him in. I’d take in the news first, myself, then tell him.

  “We’ve all studied Jim’s scans closely,” Dr. Mancias began. I had stopped breathing. “We discussed this at length.” Then he told me that he and his colleagues were in agreement. They had concluded unanimously that there was no recurrence of cancer. What the doctors in San Francisco interpreted as nodules was scar tissue. The team at UCSF—as skilled as they were in performing a Whipple—were simply not familiar with the kind of Whipple Dr. Moser had performed on Jim, he told me.

  I put down my phone. I walked over to Jim and put my arms around him. “We’re OK after all, Jimmy,” I told him.

  OK for that day anyway.

  62.

  That September, my son Charlie was getting married—the wedding to take place in Baja, Mexico, with his brother and sister and their partners coming. Jim wanted badly to be there—for Charlie, whom he had grown to love, and also for me. But the C-diff had left Jim way too vulnerable. There could be no traveling.

  So I made my way alone to Mexico, sharing a house with my children’s father, a man with whom I had once been in a state of so much bitterness and anger that just being in the same room was difficult. This was behind us now. He’d had his own struggle with cancer in his family. His son Taj, my children’s half brother—but to them, simply their brother—had battled a rare form of liver cancer a few years earlier, but was now doing well. No doubt Taj’s cancer had changed us all.

  For both my ex-husband and me, I think, it was our big losses that had allowed us to make our peace. Jim’s cancer had made me a sadder but kinder person, and certainly a more forgiving one, same as I suspect Taj’s cancer had done for Steve. For all these reasons, I think, when our son spoke his vows, my children’s father had reached out for my hand, and later that night we danced together.

  But I longed for Jim’s presence at the wedding. In the years after my divorce, before Jim and I got together, I had attended a hundred events on my own, and I’d grown accustomed to that. The previous three years had changed me, however. I wanted my husband by my side for this one. Now I called him from the rented house in Mexico, looking out at the ocean.

  “Remember our wedding?” I said. It felt like a million years ago, but the number was two.

  63.

  That fall I grew to understand a profound truth about the way most of us view illness, in our culture anyway. It was the way I used to view illness too. People got sick, then they got treated, and they got better. If on occasion someone died—my father, of pneumonia—they were probably old, or they had a car accident. If not—as with my mother, dead of a glioblastoma just after her sixty-seventh birthday—they were certainly the exception.

  As much as I had learned about pancreatic cancer and the devastating nature of the disease, in many ways I had continued to look at Jim’s illness through that same lens for a surprisingly long time. He had gotten sick, and then sicker. But eventually we’d emerge from whatever crisis was afflicting him and he’d start to get better. Even after three trips to the emergency room, even after six trips, I held on to that picture.

  So did many others. To most of the people who followed our story—all but those who had known someone with pancreatic cancer—the fact that Jim had gotten through the Whipple surgery signaled a victory. Wherever I went now, well-meaning friends would ask if Jim was “better yet,” as if it were only a matter of time before this would be so. Facebook friends sent wishes for “a speedy recovery”—a phrase I came to hate, though I didn’t fault anyone for employing it. We ourselves, though we lived with the diagnosis, somehow failed to recognize the inexorable pattern of steadily downward motion.

  If either of us had ever done anything as simple as to create a graph charting the numbers of times we had to rush to the hospital, the space between visits, the bouts of diarrhea, Jim’s weight, we could have seen it in starkly visual terms. On any graph, the line would have gone relentlessly downward. Maybe that’s why we’d never made one.

  Here was the truth, though Jim was not yet able to see it, and I did nothing to encourage that he might: Jim never felt good anymore. The only question was, how bad did he feel?

  Then there was the other part—the fact that Jim could no longer receive chemotherapy. Talking about that would have been like talking about the possibility that one day North Korea might launch a nuclear attack. What was there to do about it? What was there to say?

  He tried working, but practicing law was almost impossible now. Though Jim still addressed, as best he could, the needs of his old clients—from cases he’d signed up months before, mostly—the phone inquiries about representation went unanswered, the updates from California Estate Practice unopened. He still paid for a gym membership, but never went anymore. He had given up therapy. The Triumph sat untouched, as did his bicycle. Largely because he was unable to receive more chemo, his neuropathy had retreated somewhat, but he hardly ever drove into the city Tuesday nights for Storkzilla practice.

  Still, the hardest thing was not the pain in Jim’s gut, or the neuropathy, or the hours he spent in the bathroom. It was what happened to his brain.

  He said it didn’t work as well as it used to, and this was so. He could still talk about science and politics, and he always wanted to hear my stories. He was reading the manuscript of the book I’d finished before the diagnosis now, in an effort to help me get back to work, and had marked the manuscript with copyediting suggestions—good ones. But a cloud of fog enveloped him too and he forgot simple things. He lost his phone. Lost his keys. His glasses. His laptop, even. He knew it was happening, and the fact that this was so terrified him more even than the cancer.

  I Googled “chemo brain” and, out of the belief that it would be less alarming if he could recognize the reason for what was happening to him—and the prospect that it might reverse in time—I read out loud to Jim what the Mayo Clinic had to say about the phenomenon.

  Meanwhile, I made lists for him every morning now: tasks to take care of. Calls to make. In all the important ways, I told Jim, his mind was working fine. He could still beat his old circle of opponents at online Scrabble most of the time. We could still have our talks over dinner about politics or music or books, or our children. He had his same wry, subtle brand of humor. Most of all, he still paid exquisite care to every single thing related to me. But when I asked him a question now, he took a long time to answer. Everything had slowed down.

  “At least I can still make you laugh,” Jim said.

  64.

  Jim had his pancreatic cancer men’s breakfast group. I had a new group of friends too. Wives of pancreatic cancer
patients. Wives and widows.

  One was my friend Pam, in Rhode Island, who had come to the hospital to meet me a few days before Jim’s Whipple surgery to lend support, her own husband having died the summer before. Then there was Deborah, known to me only over the phone and e-mail, and sometimes text messages exchanged from waiting rooms in doctors’ offices. Her husband, Bob—a man she adored—was a pediatric physician who’d been diagnosed the year before Jim, and underwent the Whipple at Johns Hopkins. The surgery had seemed to go perfectly, but within weeks it turned out the cancer was back, this time in the lining of Bob’s abdomen. Since then he’d been surviving on a feeding tube in the care of Deborah, his funny, wildly loving, and infuriated wife, an RN. “It would have been better if I wasn’t a nurse,” she told me. “Then I could just be his wife. That part sort of gets lost now.”

  For Pam, who lived alone now, it was easier to talk, but with Deborah there was always the problem of not wanting our husbands to hear us, so we snuck off to talk at odd hours of the day and night, when the men were asleep, mostly. I hid myself away in the gypsy caravan behind our house to call her, as if I were carrying on an affair.

  Nobody understood my life now more than another woman who was living it. I yearned for her voice as a person in other circumstances might for a lover. Sometimes we shared medical reports. Sometimes despair. On occasion we allowed ourselves to imagine a time, one day in the future, when the four of us would meet over dinner somewhere—a great meal, served up with a pile of Creon pills, and a bottle or two of red wine. We imagined how we would look back on these days we were living, the bullet we’d dodged. “Remember that tumor you had?” “Remember that awful surgery?”

  We were two women who might have known better—she a doctor’s wife and a nurse, I a tireless online researcher. But against all evidence to the contrary, we held on to hopefulness.

  “Like you,” she wrote, in one of our almost daily e-mail exchanges, “my husband is the air I breathe, and how we are going to get through this and come out the other side smiling is a mystery to me. But somebody is going to be writing an amazing article about them in some medical journal someday, I just know it. Don’t let anyone tell you otherwise.”

  As many friends as we both had, there was no explaining this to any of them. A woman I’d never met who lived three thousand miles away understood. Sometimes she felt like my sister. Sometimes my twin.

  “I press my hand to his warm, sleeping abdomen, where I imagined his pancreas to reside,” she wrote one day, “and I will the cancer be gone, be smaller, be merciful to Bob. From my heart through my hand.” While she was doing this in Syracuse, I had been doing the same in Lafayette.

  We shared the details of our endless visits to medical facilities too, of course. Johns Hopkins. Beth Israel. UCSF. As awful as it was, a certain comfort could be found in knowing someone else walked the same path. The details of specific procedures differed, perhaps, but the bottom line was the same. There was in each of our lives a man we deeply loved, whose body was under siege from the most terrible cancer, and our days were consumed with the struggle to get him through it. With very little left over for ourselves.

  “Bob was not able to have his feeding tube inserted through his abdominal wall, which we have now tried to do four different times and different ways,” she wrote, from Baltimore. “Too much scar tissue. So we came home with a little tube down his nose, through his stomach and into his small intestine. Resumed his adjuvant therapy Thursday—miracle poison—and it’s been a long weekend of watching him be racked with sharp muscle pains, aching joints, headache, and general terrible malaise. Grateful for feeding tube, because he won’t eat a bite and I’m convinced he would have starved to death at the rate we were going. He’s a very handsome man, but ‘skeletal’ doesn’t really suit him.”

  “Yes on all counts,” I wrote back, too tired myself to document the particulars.

  65.

  Because so much of Jim’s pancreas had been removed, his body no longer created the enzymes necessary to digest food. He could not eat a bite without taking a pill first—Creon or Zenpep, depending on which manufacturer you went with.

  These pills were made from the digestive enzymes of pigs, and they didn’t come cheap. But as we would learn, on the one or two occasions when Jim found himself without his Creon and tried to eat anyway, failure to take the pills before eating even the smallest amount of food led to terrible pain. More than once, we found ourselves somewhere—heading over the Bay Bridge or to a party, suddenly realizing we’d left the Creon at home. Nothing for it then but to turn around and go home.

  I learned to keep spare pills in my wallet. Also emergency Dilaudid.

  I don’t think Jim experienced a single meal since his Whipple surgery that was totally free from pain. We had a set of rules, of course, concerning foods that would be easier or more difficult to digest. But even when he followed the rules—and he always did—you never knew when something he ate would make trouble, and when it did he could be up all night suffering the consequences. Where, in earlier times, I had always seen our dinners together as one of the best parts of our day, it was difficult now not to approach every meal with anxiety. I still dressed up for our dinners and put on music and lit the candles. We always shared a bottle of wine—a part of my day that I now looked forward to more than I should. I knew this, but I wasn’t prepared to give it up.

  Every night, as we sat down together at the table, I still took Jim’s hand and closed my eyes before we lifted our forks, our silent prayer.

  There was no need to ask what we prayed for, though I would add three words to the end of it.

  Remember this moment.

  66.

  We returned to the gastroenterologist. He proposed a new diet for Jim, designed to vastly reduce the amount of fermentable food he took in, with the hope of creating less irritation in his intestinal tract.

  It was called The FODMAP diet, and as he spoke my eyes scanned the list of prohibited foods:

  No gluten.

  With a few exceptions, no cheese.

  No milk products. No ice cream or yogurt, cottage cheese, butter.

  No onions. No garlic. No broccoli, cauliflower, beans, asparagus, beets, avocados.

  No salad. No raw foods.

  No apples, pears, cashews.

  There was more. When the list was finished, I asked what was left.

  Meat, of course. Fish. Some nuts.

  As we sat there taking it in, a sense of loss overtook me. This was not the hardest news we had received in a doctor’s office, or even close. But it was listening to Dr. Terdiman recite the rules of FODMAP living that brought me to tears as none of the rest of it had. A small, whining voice was muttering in my head—a voice I hated, but could not silence.

  Let me out of here.

  My losses were nothing compared to Jim’s. Still I registered them and grieved each one as a small death—and whether I spoke of this or not, Jim knew it too.

  “I’m so sorry,” he said, same as he did so often. “This wasn’t how I meant our life together to go.”

  67.

  Our life together: What we had imagined. What we got.

  In those early days after we met—the days Before—Jim would sometimes walk in the door at seven after his day’s work in the city and suggest that we go out for sushi. Ten minutes later we’d be in the Boxster, zipping over to College Avenue, where we liked to sit at the sushi bar, not a table, to watch the chefs at work. Or he’d learn about some interesting new place in Oakland—Peruvian, Cajun, Fusion—and make us a reservation. We might drive up the coast for oysters on a Sunday. Or to North Beach for Italian food.

  Still in my core a girl from New Hampshire who’d spent fifteen years living on a farm at the end of a dead-end road, I never ceased feeling the thrill of our glamorous California life. I loved putting on my high heels—never mind if they made me taller than Jim; he would only be proud of me—and riding the elevator to his office, or meeting him at the
bar at Sam’s or the Ferry Building. And to me, for a time, all of this—the good life, I called it—seemed like a not-insignificant part of our life together. I was having, in my fifties, a kind of experience I had not known in my twenties, thirties, or forties.

  Sometimes, during those early days together, I’d ride BART into the city at the end of the day and meet Jim for dinner there—always dressing up for the occasion, and loving the sight of him walking through the door with his briefcase, heading my way. Once, and once only, on one of those occasions when we’d made a date to meet up after work at the Ferry Building oyster bar, I’d tried playing a game with him. Dressed for the part, I pretended to be a woman he’d never met, alone at the bar, striking up a conversation as a total stranger. With my hand brushing against his arm, I asked him provocative questions about what brought him to this place, and if he had plans for later that night. I rubbed my foot against his leg, as if I were a fast and dangerous woman, like someone out of a James Bond movie.

  Jim had hated this game. Or rather, he didn’t know how to play it. He was incurably old-fashioned, hardwired to be a one-woman man, with that woman being me. The idea of flirting with some stranger at a bar wearing a slinky dress—even if that stranger were his wife—left him deeply uncomfortable.

  “Can we stop this now?” he said after a couple of minutes. “Can we just be us?”

  He was a man who thrived on commitment, a man who wanted to be married. Married to me.

  Before I met Jim, I used to study other people’s marriages, but from the outside, with my face pressed against the window of a house I never entered. I supposed that a good marriage was an endlessly extended romance combined with a regular dose of fun. How many people got that?