I had my questions set: When were you diagnosed? What chemotherapy choices did you make? What doctor, what hospital? When was the Whipple performed? How long ago?
When I heard “two years ago” or (rarer by far) “six,” I felt a surge of hope. Then I wanted to know every single thing that person had to tell me so that I could report it all later to Jim.
“I never believed the cancer was going to get me,” one woman told me. “A lot of people say how terrible the Whipple is, but I told myself the day of the surgery that this was the best day of my life.”
I wrote down every word. I kept a notebook—one of my many—containing what they’d said. Evenings now, when I lit the candles and we sat down for dinner—one of the few parts of our old life we’d managed to hold on to—I took my notebooks out and read out loud to Jim the stories of the people I’d met over the phone. “Joe plays tennis three times a week,” I said. “He plays eighteen holes of golf every Sunday.”
We lived off of that. My goals now had become so much simpler and more basic: that Jim be alive two years from now. And five.
Maybe seven, I said. How much was fair to ask for without being greedy? Seven years from now, they’d have a cure. If we could just keep Jim alive long enough, he’d get to the age where you die anyway. Why not go for that?
40.
It was in the first couple of days after we’d received Jim’s diagnosis that my film agent, Judi, told me about the man I will call Dr. Miracle. The mother of a friend of hers had been diagnosed with pancreatic cancer and was treated by him. Ten years later, she was still alive.
For a patient with pancreatic cancer, this was extraordinary. Within ten minutes of hearing the story Judi had told me, I was on the phone to Dr. Miracle’s office. Two days later, we were driving to L.A. Jim was at the wheel still. Over all our time together—just three years at that point—he had invariably been the driver. He was determined that cancer would not change this. He chose to forego painkillers so he could take the wheel.
Dr. Miracle maintained his offices on the campus of a well-known medical facility. He was an outlier, and though well-known in the world of pancreatic cancer treatment, a highly controversial figure.
Even before that first day we met Dr. Miracle, I’d been warned about his manner. “I hear he’s extremely unlikable,” Judi had told me. “My friend says he’s arrogant and dismissive and gruff. But her mother has been cancer-free for going on nine years now. She worships the ground he walks on.”
Unlikable was fine, I told her. We weren’t looking for a friend. I may even have allowed myself to believe that this doctor’s apparent lack of geniality might serve as some additional indication of his brilliance, which could translate into his ability to cure a form of cancer most people regarded as virtually hopeless.
We took our seats in the waiting room and I looked around at the others there: a couple of very thin bald women and one man whose body appeared so wasted that when he stood up, he’d held onto the waistband of his pants.
My eyes turned back to my strong, handsome husband, his beautiful head of dark, grey-flecked hair, his arms lean but muscular. Then back at the scarecrow man.
Not Jim.
When it was our turn, an assistant led us into the great man’s office, past a wall of photographs showing Dr. Miracle shaking hands with Katie Couric, Dr. Miracle receiving an award.
He was a large man who looked to be a few years older than we were. “The question is,” he said, “do you want to get on the same old train or try a different ride? Because we both know where the other one’s taking you.”
He asked Jim almost nothing about himself—his symptoms, his current status, and certainly not anything about who he might be as a man independent of the tumor in his pancreas. He sized me up briefly, and then stared out the window.
For the next hour and a half, Dr. Miracle held forth on the sorry state of pancreatic cancer treatment in the medical establishment today and the absence of virtually any meaningful improvement in survival statistics over the past twenty years. One by one, he brought up the names, now familiar to me from my long days of research, of the key players at UCSF, Stanford, MD Anderson, Johns Hopkins, UPenn, Sloan Kettering. When he got to the name of a woman whose medical assistant I’d spoken with just one day earlier—the author of some of the most current papers on the topic of pancreatic cancer, who had a number of major clinical trials under way—his lip curled with contempt. To hear him tell it, it seemed to Jim and me, the leading oncologists in the field were united in what almost appeared to be a conspiracy whose aim was systematically overseeing the swift and painful death of pancreatic cancer patients all over the nation and beyond, and—this was worse—to sabotage the work of Dr. Miracle. In his eyes, at least, one person only stood between Jim and virtually certain death. He was that man.
Dr. Miracle had a highly unconventional approach to treatment. First of all, he told us, most doctors were far too swift in recommending surgery. They’d administer chemotherapy for a few months, then go straight to the Whipple if they felt it possible. The problem here being that a Whipple surgery was so tough on the body that it would take months to recover from, which caused a dangerous and very possibly lethal interruption in the delivery of chemo.
What Dr. Miracle recommended was a much longer period of chemotherapy before surgery—a year, or longer—assuming that the chemotherapy was successful in shrinking the tumor sufficiently to make this possible, as he believed to be far more likely under his regimen. And the cocktail he used for his patients—though tailored to each one individually, he told us, based on consultations with one of the world’s most eminent gene scientists—differed significantly from those delivered at other facilities.
He rattled off a list of drugs, whose names—unknown to me only two weeks earlier—had now become part of my daily vocabulary (Gemzar, Abraxane, irinotecan, oxaliplatin, and one with the bizarre but oddly apt name of 5-FU). But the treatment delivered by Dr. Miracle included one crucial drug in the mix that had not been mentioned by any other doctor or researcher whose programs and papers I’d studied over these days. Avastin.
Avastin had been around for a few years now, but traditionally only in use for patients with colorectal cancer. Dr. Miracle was the only one who used Avastin with pancreatic cancer patients, he told us, and it was because of this, he believed, that he was achieving such impressive results.
If we chose to pursue treatment with him here in Southern California, Dr. Miracle went on, Jim would embark on a program of weekly infusions of his cocktail, with deliveries of Avastin every other week, or three weeks out of four. Because Avastin was off-label for pancreatic cancer—meaning not identified by the FDA as an approved drug for treatment of this kind of tumor—there would be no insurance coverage for these infusions. A single one of which cost $6,000.
The price tag did not give me pause. Just the opposite. Though for some time now Jim hadn’t been earning anything close to what he once had in his practice, and I knew he worried about money, the prospect that there might be a new drug for him—no matter what the price—filled me with hope and resolve. We already knew all too well—from those grim charts in which survival was measured in weeks or months—what we might expect from Gemzar/Abraxane or all the rest. No graphs existed for survival on Avastin. To us this meant that anything might still be possible.
By the end of our ninety minutes with Dr. Miracle, I was convinced that we must do whatever it took to get Jim this treatment, and Jim for his part seemed equally ready. The fact that it had taken us seven hours to make the drive from Hunsaker Canyon to this high-rise office, with its waiting room full of people so thin it was hard to tell if they were eighty or forty, was something we’d have to figure out, but we would. And we weren’t the only ones. My research had already yielded the name of another couple—Liza and Art—who made the weekly trip from the Bay Area for the miracle of Avastin.
All we wanted to know was how soon Jim could start.
W
e stayed so long talking with Dr. Miracle that by the time we left everyone else at the office had gone home, including his assistant. The receptionist’s desk was empty.
“How much did today’s visit cost?” I asked the doctor—I, the one who carried the checkbook.
“Pay me whatever it was worth to you,” he said.
I wrote him a check for a thousand dollars. More magical thinking: If Dr. Miracle’s advice was worth more than any other doctor might charge, it must be the best.
41.
We would be back for the first infusion in two weeks. Just waiting that long was agonizing, but this was the amount of time Jim had to wait to get his bilirubin count down. Meanwhile, to support the Western medicine approach, we pursued additional forms of treatment out of a belief that Jim should have every single thing going for him that he could.
Though Dr. Miracle had displayed no interest in nutrition and diet as a way of fighting cancer—and kept a large jar of hard candy at the reception desk for patients checking in—I stopped baking the pies Jim loved and removed all sugar from our diet. To avoid additional stress, I suggested that we discontinue all discussion of politics around our house. I sent away for a CD of Jon Kabat-Zinn teaching meditation techniques and books about juice cures and the ketogenic diet and tracked down an organization whose focus was providing personal athletic training for cancer patients for the purpose of building their strength and endurance in preparation for surgery. If Jim was going to get the Whipple surgery—and we were determined he would—it was important that he build his body up for it, as much as he would if he were preparing for a marathon. More so.
I learned about a man with a practice in Marin County who had achieved impressive results with cancer patients. Michael Broffman was not a medical doctor, but for over thirty years he’d been a student of Chinese medicine. Now he offered consultations and designed herbal treatment plans for people with serious, life-threatening illness.
In times past, Jim would have been skeptical, and probably he still was—Jim, a lover of pure science, a man who held the view that Reiki and homeopathy made no sense, and even acupuncture was a dubious discipline—but he agreed to pay a visit to Michael Broffman’s office with me, after first filling in a questionnaire many pages long concerning his health history and symptoms.
From the minute I walked in the door I liked the Pine Street Clinic, with its plant-filled windows and strings of Tibetan prayer flags hung from the ceiling and a wall of very old wooden drawers labeled with the names of herbal remedies. There was a little fountain and crystals, of course, and prayer bowls and nice rugs and comfortable chairs—Eastern music playing, candles lit. But beyond the New Age style of the place, I registered a seriousness about the work being done here too, and Jim must have as well because I saw from his face that he was open to what the next couple of hours might teach us, and holding out some hope—hope being hard to come by, these days—that something good might come of this.
We were led into Michael Broffman’s office—a small, welcoming room filled floor to ceiling with books, most of them evidently in Chinese, though he himself was clearly American. He was a nice-looking man, around our age—a cyclist, evidently, as I learned from the clippings I’d seen in the hall commemorating his participation in various fundraising rides. A couple of large standard poodles sat at his feet.
“I hope you don’t mind,” he said, gesturing to the dogs, and we didn’t. It turned out the poodles were cancer-sniffing dogs, trained to detect the presence of a tumor in people who might or very possibly might not know they had one. For years, the dogs had been an integral part of Michael Broffman’s practice, he explained, but a problem had arisen: Sometimes, walking through the streets of his small town with them, the dogs would become extremely agitated when they passed some person on the street. Clearly, they had detected something in this individual that he or she may not have been aware of yet.
Enough had been written about these dogs by this point in the local press and beyond that the fact of their agitation and attention to a total stranger produced alarm. And though it might be said that their response led to that person’s seeking out the advice of a doctor—and very likely discovering, when she did so, the presence of cancer—it was still a complicated thing for Michael Broffman to find himself and his dogs representing, to his fellow citizens, something like the Angel of Death.
So the dogs had been taken out of service, and by whatever means he’d accomplished this, they no longer identified the presence of cancer. Now, for instance—though we knew all too well that at this very moment a tumor was growing in Jim’s pancreas—the dogs displayed no more attentiveness to Jim than they did to me.
Unlike Dr. Miracle, Michael Broffman had a warmth about him and a manner that suggested he might actually be interested in Jim, and not simply Jim’s pancreas. I leaned forward in my seat—yellow legal pad in hand as always—not wanting to miss a word.
He took out Jim’s questionnaire and a thick sheaf of notes he’d made on the case. For an hour he went through a long and diverse range of possible treatment protocols—some involving diet, some supplements, some mushrooms and Chinese herbs. He was not one of those alternative medicine purists averse to chemotherapy—in fact, he was familiar with Dr. Miracle, and was currently working with at least one other patient being treated by him (though as open-minded as Broffman was about Dr. Miracle’s brand of treatment, the same could not be said of Dr. Miracle for Broffman). His goal, he told us, was to use as many tools as possible to address the disease that had taken hold in Jim’s body, with a realistic awareness of how difficult this one would be to eradicate.
When our visit was over, I had pages of notes. We stopped at the desk in front, where we bought a vast assortment of herbs and dried mushrooms. It felt good buying them, as it always did now, when I identified some new food or vitamin or herb thought to possess cancer-fighting properties. As much of a long shot as it may have been, that a handful of mushroom powder or turmeric-and-Reishi-mushroom capsules could wage war on a deadly cancer, taking those supplements and capsules served the purpose—if it did nothing more—of relieving our sense of powerlessness. It had been nearly intolerable to leave Jim sitting there knowing that inside his body at that very moment—while we awaited the first infusion of Avastin—the cancer cells were multiplying.
Among the many recommendations of Michael Broffman, one offered a beautiful simplicity, and unlike what Dr. Miracle was offering, required no vast expenditure of cash. Michael Broffman spoke of the need to restore the flora and fauna in Jim’s digestive system that no doubt had been eradicated by the strong antibiotics Jim had been taking for infection. We needed to repopulate Jim’s gut, he told us. Now he would tell us how.
“Eat good dirt,” Broffman told Jim.
Through a mutual friend in Berkeley, I tracked down Michael Pollan, author of several books I knew well on the subject of organic food. I called him up to ask where he’d go in the Bay Area to locate the best dirt.
“There’s a farmer in Petaluma,” he told me. “Bob grows the best organic vegetables around. He hasn’t let a single chemical touch his land in over thirty years.”
I called Farmer Bob. I was not the first person to seek out the curative properties of his dirt, evidently. Not infrequently, people suffering from some form of illness or other that had required them to go on extreme antibiotic regimes had shown up at his farm. Sometimes they just sat down right there in the field to pull up a carrot and chomp on it.
I liked the idea of making the trip to Petaluma to procure our dirt, but we were also pursuing so many other things at this point—interviewing oncologists, visiting a nutritionist and an exercise therapist, taking those daily blood tests to monitor Jim’s bilirubin, and more. No worries, Bob told me; one of the young people who worked at his farm made a run to Berkeley three times a week to deliver vegetables to Chez Panisse. He could leave a box of root vegetables for me at the restaurant—beets, carrots, turnips, parsnips, the kind that hol
d dirt—with none other than Alice Waters as the go-between.
Two days later, we stopped by Chez Panisse to pick up our good dirt, attached to a boxful of very good root vegetables. Under other circumstances, of course, I would have washed them first, but that was before. That afternoon we sat outside together under the dangling pods from the wisteria vines, filling our stomachs with carrots, dirt and all. We were like two characters in some fairy tale I hadn’t read, one that must exist somewhere, seeking the secret potion, the magic bean. Maybe it was right there, attached to a carrot. Maybe it would be found in the smoothies I concocted daily now in our Vitamix, filled with nuts and chia seeds and organic berries chosen on the basis of their antioxidant level.
More likely, it wasn’t. But believing it might be got us through our days.
42.
The bilirubin number went down, and the infusions began. (Though first there was a surgery—a minor one, by comparison—to place a port in Jim’s chest. Now, when I reached over to touch him in the night, there was a hard plastic receptacle just below the skin, for receiving the chemo.)
We made our first trip back to Dr. Miracle’s office the week after Thanksgiving and wrote the first $6,000 check for the magic Avastin. That night, Jim felt sick, but it felt good knowing that we were no longer simply leaving the cancer cells to attack him. We were attacking back.
Our lives after that took on a rhythm unrecognizable from before. There were the infusion weeks, and the off-weeks—those seven-hour drives to Southern California, trips to the oncologist in Pleasant Hill for check-ins. In between, and despite the sickness caused by the chemo, Jim tried to carry on some semblance of a normal life, disappearing into his office when he could to work on cases, though with an awareness that if any new client asked him to take on an estate fight, he’d be morally obligated to turn her down. “I wish I could help you,” I heard him say, on the phone, “but I’ve been having some cancer treatment that’s got me a little laid up at the moment.”
The Best of Us Page 16