We were sitting on that bench together taking in the simple pleasure of the sun on our faces when we spotted Dr. James Moser walking down the street toward us—just returning from lunch probably. Evidently nobody was getting a Whipple at Beth Israel that day, because he was wearing a suit.
It was always a great moment when we got to talk with Dr. Moser. You always knew that his time was in short supply, and we hungered for his words, and any information he might have for us. There was no space in our communication for pleasantries or even emotion. But that day he was actually smiling.
“We got the pathology reports back,” he told us. This was the analysis of those lymph nodes they’d taken during the surgery.
From my many hours on the phone with pancreatic cancer patients and their widows, I knew this was often the moment when you’d learn if the person you loved was going to live or die. My new friend Pam—unknown to me until she’d come to the hospital to meet me just before Jim’s surgery, but instantly a friend—had described to me, though not to Jim, the moment when she and her husband, Mike, had sat in the office of their surgeon at Mass General when he broke the news to them, a week after Mike’s Whipple procedure, that of the eighteen lymph nodes he’d taken out, fifteen were full of cancer.
Mike had held on far longer than most: nearly four years after the surgery. But the day they’d heard the results of his pathology report had been the moment when they’d known it was only a matter of time before the cancer would come back, and when it did it would kill him.
Dr. Moser sat down next to us on the bench. I leaned in so as not to miss a syllable. We had lived through a few of these times now—moments when it felt as though our entire future were about to be laid out for us in the space of a sentence. It seemed that time stood still.
“The results look good,” he told us. “Your margins were clean. Out of the thirty-eight nodes I removed, thirty-six were cancer free.”
Good results. For a world-class surgeon, that must have meant an elegantly executed procedure. No doubt Dr. Moser’s skilled hands had gotten into places others could not have reached. There had been the matter of that one particularly challenging artery in Jim’s pancreas, I knew. To remove the tumor had required Dr. Moser to cut perilously close. But he’d accomplished this. For a surgeon, this must have constituted success.
Good results, for Jim and me, meant something different—that my husband might be cured. We might get our life back. We might yet raise olives, and grandchildren.
Hearing the news of the pathology report that day, I started to cry with happiness. Jim was smiling. It seemed, at that moment, as if the worst might be over.
Now Dr. Moser was shaking Jim’s hand. I put my arms around Jim, in the way I’d learned to do since the surgery: cautiously, with an awareness of all the places in him that hurt, which were most of the places. All our focus on those thirty-six clean nodes. Whatever the story was with those other two lymph nodes, the main thing was that our surgeon appeared happy, so were we.
I think now that those two lymph nodes were the real story that day. Even if there had been only one lymph node containing evidence of cancer cells, it would probably have been enough to tell us all we needed to know: There was cancer in Jim’s body, and sooner or later it was likely to make its way through his lymphatic system. We might have more time, or less, but I think that day on the bench outside Beth Israel, our surgeon delivered something close to a death sentence. We just chose not to hear it.
58.
The term for follow-up chemotherapy administered after surgery is “adjuvant.” It was crucial, Dr. Moser said, for Jim to embark on eight weeks of infusions, as soon as he was strong enough. He spoke of Folfirinox —the same form of chemotherapy we’d opted for in the months leading up to surgery.
“It’s an unconventional choice,” Dr. Moser told us. “Jim would be one of the first to do this. But I think he can handle it.”
What kind of odd new reality had we entered, that the idea of filling Jim’s veins with a form of treatment regarded as the toughest and hardest to tolerate, the most toxic, should land on our ears as good news? But it did. If there were a chance that one cancer cell remained in his Jim’s body—and evidently, some did—I wanted it eradicated.
We believed we could accomplish this. Nights in bed, lying side by side or in each other’s arms the best we were able to in the post-surgical world, I reminded Jim of our successful summiting of Mt. San Sebastián, and his of Mt. Whitney before that. He was a long-distance runner. He was an Eagle Scout. As small a percentage as might exist of pancreatic cancer patients who’d beaten the disease, the percentage of men who made it from Webelo to Eagle Scout was smaller, I had reminded Jim. What did that tell you?
These were the times I went back over, for him, the stories of the men and women I’d talked with on the phone over the last nine months who’d managed to survive, cancer free, for years after the Whipple. Laurie in Southern California, Robert in Miami. Ruth Bader Ginsburg (our favorite). There was Dan, the founding member of the men’s pancreatic cancer breakfast club, and all the others in the club, getting on with their lives.
“Remember Joe, the one who plays eighteen holes every Sunday?” I said, as we lay in the darkness. I had just called him that morning to tell him about Jim’s surgery, and to ask how he was doing.
He was doing great, evidently. “He said to tell you that come fall, when we’re back in Boston, you two are playing eighteen holes.” And get a load of this: in honor of Pancreatic Cancer Awareness Day this summer, Joe was going to be on the mound at Fenway, throwing out the first pitch.
“Next year, that’s where I want to be,” Jim whispered. “Out on the mound, baby.”
59.
More days passed in Boston—in Boston still, because the pancreas team wanted to keep a close eye on Jim—and slowly we began to see what life might look like after a Whipple procedure. (What it was for now, anyway. We were still able to hope that what Jim was going through might be temporary.) When a new complication arose—as they did, daily—we could tell ourselves, “We’ll just get through this one.” We had not yet recognized that complications were not simply temporary setbacks. They were our way of life.
I won’t list them all. The drains, the twice a day Lovenox injections to prevent clotting, the leak that required another surgery, the hour-long visits to the bathroom. The diarrhea, or constipation, the stomach pain, the back pain, the hernia, the vocal damage that had required first one surgery on Jim’s vocal cords, then a second. The rows of pills on the breakfast tray. The hospital socks to reduce swelling, the face masks, the sterile gauze, the inflatable pillow, the ascites in Jim’s abdomen, the chills, the neuropathy.
One day, during an examination, Dr. Moser reported that Jim was suffering from something called Portal hypertension. A look came over his face when he said this, but at the time this didn’t seem so significant. There were so many other things going on. Hard to keep them all straight.
Four times that summer, we had to race back to the hospital. Every time we did, there was first the wait for admission in the ER—each time with the same maddening round of questions requiring one of us to rattle off the history of Jim’s treatment from the beginning, list the medications he was on, answer, again, “Is your husband allergic to any medications?” I got so good at this that the nurse taking it down would sometimes ask me to slow down.
We had to stay close to the medical team, but we managed a couple of short trips out of town—to New Hampshire for a visit with my daughter and her boyfriend, where we helped to paint the new house whose purchase had been made possible, in part at least, by Jim’s tough lawyer letter on their behalf.
From New Hampshire we drove our rental car north to Maine for lobster and pie on Becky’s porch—trying to recreate the times we’d known there in summers past, though everything was different now. Months before this—back in the spring, when the news of the steadily shrinking CA19-9 numbers had filled us with ambition for our lives
—I’d once again reserved a week for us at the cabin on Silver Lake that we’d rented the past three summers and vowed we’d return to forever. We ended up forfeiting our reservation—not the first canceled plan, and far from our last.
But we could spend a few nights in Maine at Becky’s cottage on Mousam Lake, I said, for our ritual of corn from the garden and pie on the porch. It was summer. I could finally swim.
That afternoon, sitting on the porch looking out at the water but no longer able to enter it, Jim saw blood coming out of the drains in his belly. I called our medical team in Boston, while Becky’s daughter, a cancer survivor, lifted Jim’s shirt to study his wound.
Everything felt fragile now. The corn had been a terrible mistake; it kept Jim up that night, back and forth to the bathroom with pain so bad that it was almost a relief returning to Boston next morning. What we wanted now, more than sunsets or a screen porch or the sound of loons on the lake, was the safety of doctors close by.
60.
Finally, as summer neared its end, we were allowed to fly back to California. We had one final conversation with the team at Beth Israel, who had revised Dr. Moser’s initial plan to treat Jim with Folfirinox, opting instead for a gentler form of chemotherapy, gemcitabine.
I fought them on that. “What about Folfirinox?” I said. What about Dr. Moser’s words to me that day on the bench outside the hospital, “If I were in your shoes, I’d want Folfirinox”? If it was tougher, it was better. Bring it on.
In the end, we went with a modified version of Folfirinox called Folfox for Jim’s adjuvant chemotherapy. The doctors agreed to this, but warily.
“You need to be careful,” Jim’s Beth Israel oncologist told us. “If the chemo is too hard on Jim, he’ll have to interrupt treatment, and that would be more serious than not having had it in the first place.”
They told us we should wait as long as twelve weeks for Jim to begin treatment back home. “The important thing is making sure he’s strong enough to withstand this,” the Boston doctors told us, “and that you get the first dose in before twelve weeks have passed.”
But we were impatient and ambitious. Neither one of us had been able to put out of our minds those two lymph nodes that had been revealed in his pathology report to contain cancer cells. We wanted to get on with the process of knocking them out.
And Jim was looking better. Putting on a little weight even—back up to 128 after dropping to 120, following surgery. Our oncologist back home, examining him when we returned to California, offered the opinion that Jim was ready to begin treatment at the six-week mark. We went for it.
It is easy, from the distance a year brings, to revisit all the choices we made and ask, might things have gone differently if we’d made different decisions?
In late August, five days after he began treatment with Folfox, Jim became so ill he had to be hospitalized. Either as a result of his lowered resistance from surgery combined with the chemo, or perhaps as a direct result of being in the hospital—a breeding ground for bacteria—Jim came down with the C-difficile infection. As he had with the cryptosporidium, only far worse this time, he was suffering from such massive bouts of diarrhea that he dropped ten pounds over a weekend with no sign of a letup. Ten pounds. Then twelve, fourteen.
The doctors gave him antibiotics, vancomycin. This seemed to get the C-diff under control, though we also knew that once a person has contracted C-diff, it frequently returns.
Meanwhile, Jim was due for another round of Folfox, but because of the infection, it was postponed. First by one week. Then two.
Finally he could get chemo again. Two days after the infusion the C-diff came back.
This time we were ready for it. I had read a series of articles about a form of treatment for C-diff whose results were far superior to those patients experienced when treated with vancomycin. This was fecal transplant: a procedure that called for the insertion, into the digestive tract of the affected patient, of fecal matter from a healthy individual, for the purpose of repopulating the gut with flora and fauna that might fight the infection. It was a concept not so far removed from our practice, back in the previous fall, of eating dirt. But more radical now, and more powerful.
The doctors who’d been treating Jim had shown no interest in fecal transplant, so we sought out a gastroenterologist in Oakland who specialized in this. The waiting list to see him was so long that the next appointment stood two months out, but I told the receptionist my husband couldn’t wait that long, and when she held firm on the dates, I asked to speak with the doctor himself. The next day we were sitting in Dr. Stollman’s office.
Neil Stollman was a warm, open, approachable man—just the kind of person I might have expected for one who had ventured into the territory of fecal transplant. No doubt his years of performing a procedure that many in the conventional medical world still regarded with distaste had contributed to the air he had of irreverent humor. “My own daughter’s embarrassed by what I do,” he said, laughing. “But I know it saves lives.”
“This C-diff could kill me before the cancer has a chance,” Jim told him.
Neil Stollman nodded. “No shit.”
When I told him that I’d been so desperate to help Jim—and so fearful that time was running out that I’d prepared homemade fecal transplant capsules, using myself as the donor, Dr. Stollman displayed no sign of shock or censure.
“I’m not going to give you a hard time for being a do-it-your-selfer,” he said. “A person who’s been intimate with the patient is often one of the best donors.” Still, the method he prescribed for fecal transplant made use of certified fecal matter provided by a lab in Cambridge, Massachusetts, which would be conveyed to Jim through a procedure roughly akin to a colonoscopy.
By the time we had made it to Dr. Stollman’s office, Jim was down to 108 pounds and dropping more every day. Neil agreed to see him for the procedure the next morning.
Within eight hours of receiving the fecal transplant, the diarrhea was gone. By the next morning, color had returned to Jim’s face. He could eat again without running to the bathroom. The next day his weight was up two pounds. By the end of the week he was at 116—a number that sounded good to us now.
We called the infusion center. Jim was ready to resume chemotherapy, we told them.
No more chemo, they told us.
“Unfortunately,” the oncologist explained, “in a situation like this one, where chemotherapy has been severely interrupted not once but twice, its effectiveness has been compromised. When the administration of chemotherapy is inconsistent, the body has an opportunity to develop resistance to the chemicals. It would no longer serve you to receive further infusions.”
Here came those malevolent cancer cells again, straight out of a Hollywood action movie. They’d gotten a taste of our secret weapon, and now they were onto us.
We called our team in Boston then, to revisit the decision, but our Boston oncologist took the same position the one in California had. There would be no more chemotherapy for Jim. Then, or ever again.
“Maybe it’s good news in a way,” Jim told me that night, as we uncorked the wine and lit the candles for dinner. “Now we just live our lives for a while without all these trips to the cancer center.”
We knew better, of course. There were those lymph nodes haunting us—the two out the thirty-eight Dr. Moser had excised from Jim’s abdomen, the ones in which the pathologist had registered the presence of cancer cells.
I tried not to think about them, but I did.
61.
When we first returned from Boston, we had assumed that Dr. Moser and his team would continue to serve as Jim’s primary medical team, supported by the local infusion center where he’d received treatment earlier. But it swiftly became clear to us that it would no longer work to have our oncologist and surgeon three thousand miles away. After checking out a number of options closer to home, we made an appointment with the top Whipple surgeon at UCSF—not for further surgery, but for oversight
of Jim’s case. Most important, we had to choose a new oncologist. We made an appointment with Dr. Eric Nakakura, the top UCSF pancreatic surgeon, and Dr. Andrew Ko, regarded as one of the top pancreatic oncologists in the Bay Area.
As we had so often, we made our way across the bridge for what I now recognized would be a full day of sitting in waiting rooms, undergoing tests, conferring with medical assistants, answering the familiar round of questions about medications, procedures, surgical history, and finally seeing the doctor.
Jim began the day with blood tests and scans. It was a few hours later when we got to the specialists. First Nakakura. Then Ko.
The first twenty minutes of our visit with Dr. Ko felt routine, predictable—a recounting, despite the presence of the file of Jim’s treatment to date, culminating in the Whipple in Boston.
Then Dr. Ko looked down at Jim’s file, and back at us.
“So, the appearance of these soft tissue nodules on your scan strongly indicates the recurrence of the cancer,” he said, as blandly as if he’d been offering commentary on the Giants’ performance that summer, or the weather. Instead of a death sentence.
Soft tissue nodules? Recurrence?
This was not the first time I had the sensation that the walls of a room were closing in on me, the floor giving way. A sick feeling came over me, the taste you get when you think you might throw up.
“From the Beth Israel scans taken after your Whipple,” Dr. Ko was saying, “it appears that these nodules were present back in July, but they are more easily detectable in this current scan.”
I reached for Jim’s hand. Always, in these moments, my first response. Here I am. Where are you?
It seemed to me that Dr. Ko had surprisingly little to say about this situation. If we had been less stunned, I would have taken out the notebook I always carried for our doctor visits and begun to question him, but now I could only study the wall behind the doctor’s cool, pleasant face. To look at Jim’s would have been too hard.
The Best of Us Page 21
