This was what Carl Merril had envisioned decades earlier, and what was on his mind when he and I struck up a pen-pal relationship once it was clear that Tom was finally on the mend.
“I’m not sure who feels better, Tom or me,” he wrote. He and Biswajit had struggled so hard and for so long to move phage therapy forward in those early years, only to come to the seeming dead end of retirement for him, and Biswajit’s move was on to other work. Like so many of the scientists I’d come to know on this journey, Carl shared that Tom’s case had profound meaning for him that reached back to his youth. He traced his earliest passion for science to summers with his grandfather, an accomplished electrical engineer, who taught him to read, physics books in particular, along with mathematics through calculus and matrix algebra. His grandfather’s love of sports car design was also infectious. Disassembling, and more important, reassembling, those high-performance engines, and driving the cars, had become a serious pastime for Carl, honing the same intensity he brought to his career as a scientist. Plus it offered a release.
“With the cars, I at least had the illusion of control, and if something broke, I could fix it,” Carl wrote. “This was a degree of control that I could not achieve in either medicine or the laboratory, so in a way, the cars offered an escape to a world where I had more control.” In retirement, Carl’s penchant for fast sports cars and building models for his grandkids drew smiles from others, but for him, the high-pressure, high-stakes challenge of Tom’s case, and the opportunity to contribute as he did, had brought the thrill of it all full circle. A kind of healing.
Caring for Tom at home was no simple matter. I arranged for regular visits from mobile nurses, physical therapists, occupational therapists, and aides. We had a hospital bed set up in the living room. Tom’s childhood friend Allen built temporary wheelchair ramps and installed rails in the bathroom. Although he came home in a wheelchair, Tom graduated to a cane within a few weeks. A month later, he was walking without it. Day by day, he improved, but recovery took a long time.
“Can’t say we weren’t warned,” I said to Tom one day. “Do you remember a few weeks after you got to Thornton, Tom Savides told us that the rule of thumb was that for every week of hospitalization, it takes five weeks to recover?”
“I don’t even want to do the math on nine months,” Tom replied with a deep sigh.
On the bright side, Carly and Danny moved from San Francisco to San Diego that summer. Carly visited regularly, and she and Tom went for walks and played boisterous games of cribbage. We enjoyed frequent visits with our other kids, Suzi, my parents, and a steady stream of friends, students, and staff.
I wish I had videotaped the moment Tom and our Maine coon cat, Newtie, were reunited. A few months earlier, Newt had had a near-death experience himself after I put a permanent stop to him stealing the kittens’ food. I was so busy at the hospital, I hadn’t noticed that Newt had stopped eating altogether. He suffered kidney failure and ended up on a feeding tube just like his master. Over the next year, he and Tom would nurse each other back to health, Newt curled up in the crook of Tom’s elbow, gently snoring.
One afternoon in September, Chip brought a special visitor out to see us. When I opened the door, there, in Navy fatigues, stood a youthful Tom Cruise lookalike, Lt. Commander Theron Hamilton from the US Navy BDRC lab that had supervised the preparation of Tom’s two IV phage cocktails. “Amazing Theron,” as we’d come to call him, had been quick to respond to Chip’s initial SOS for phages and then had ushered the formal request through the required ranks for approval. Time had only deepened our awe that Theron had been able to so nimbly navigate the military bureaucracy, and that he and Biswajit hadn’t hesitated to turn their lives—and their lab—upside down to launch the offensive against the A. baumannii. This was one naval battle that had been fought and won in the lab.
We’d seen Chip since Tom’s discharge, but when he and Theron walked through the door, it was instant euphoria all around. Tom and I were overwhelmed to meet Theron in person. His decisiveness early on to jumpstart the Navy process, press the admirals for approval, and then to support Biswajit and his lab at every turn was inspiring. At a scientific workshop where he presented Tom’s case, Biswajit later described his boss as “brave.” I’m not sure that kind of courage—which clearly runs deep in the ranks of Navy scientists—gets celebrated in the ad campaigns, but it should. Theron, long a steely smart superhero in our minds, turned out to be a warm, tender-hearted one, too. I thought I saw all three guys with tears in their eyes at first, but in a flash, they were all laughing and back-slapping.
Chip was recovering, too. The old familiar spark was back. Throughout the ordeal, he’d never flagged, never lacked the energy or attention for his round-the-clock doctoring. Or if he had, he had not shown it to us. And he’d never lost his sense of humor. But when he was tense, his humor had a dark edge, and to see him relaxed now, we realized we’d all been living in the shadows for a very long time.
Soon after Tom came home, we began to talk—really talk—about what had happened. We realized that we had gone through the same ordeal but had different experiences. Although we had now been married twelve years and spent almost every day of his hospitalization together, nothing prepared us for how we would feel when we learned about what the other had seen, felt, and thought through the last nine months.
“Remember the time in the ICU in Frankfurt when you demanded a smorgasbord of food, and then promptly threw it all up?” I asked Tom as I helped him sit down at the breakfast table one morning a few weeks after he came home. “You spewed black projectile everywhere. I told you if your head had spun around 180 degrees, you could have starred in the next Exorcist movie!”
Tom stared. “I did?” He ignored his scrambled eggs and gazed off into space, tugging at the tendrils of a memory like a gnarled piece of yarn.
“I was a Buddha,” he murmured. “I was sitting in a lotus position, feeling absolutely beatific, on another plane.” He extended his arms, palms up, and closed his eyes before he continued. “I was so at peace, I wanted to bestow upon the world a gift, so I opened my mouth, and all of these silver ribbons of tinfoil swirled out. They were so beautiful as they fell to the ground, how the flecks of light made them sparkle. Everyone was running around, picking them up; they were so happy.”
He wasn’t joking. I gaped, then snorted. “A gift?! Not bloody likely! It was a mess!”
We both erupted in maniacal gales of laughter, then shuddering gasps that morphed into tears. We held each other and wept, one of the first of many such moments we would have over the next few years, as we processed what had happened.
“I’m so sorry,” Tom whispered, burying his face in my neck.
“What are you sorry for? I’m sorry you had to go through all that!” I clung to Tom’s shoulder and then pulled away, looking at my husband with new eyes. He was a changed man, physically, mentally, and spiritually. Try as I might, I would never really know what had gone on inside his mind and his body all those months.
Years before he fell ill, Tom had started collecting Buddha statues. He’d had a particular fascination with the Starving Buddha, which had a skeletal appearance, depicting the suffering that Buddha experienced through an extreme fasting period prior to his enlightenment. Nirvana might have to wait, but Tom had certainly transcended states of ordinary consciousness in his months-long “fast,” and maybe stumbled onto his own Starving Buddha, the one within.
“We have to get to know each other again,” I whispered. “And it starts with understanding what happened.”
“Write it down,” Tom told me. “I want to tell you about my hallucinations, my dreams.”
Thus began our journaling. On sabbatical from the university, I would rise every morning at five a.m. and write. Furiously. Each day, I would consult my entries from Facebook—fifty-two pages worth—and write out my version of our story, consulting at times with Carly and Frances, or Chip and Davey for the medical details. Tom would rise
later, and while sipping from his mug of Peet’s, he would seemingly enter a trance, dictating his hallucinations in vivid detail from the searing memory of them—memories that he had struggled at times to forget.
We shared some of the entries with my parents, Cameron, and the girls, and read some aloud to Jill’s daughters. Now that Tom was out of the woods, everyone started to ask questions about things they’d wondered about but were too polite or afraid to ask.
“What’s a superbug?” asked my twelve-year-old niece, Morgan, after I’d read our first entry to her and her sister, Rylie.
“Will I almost die too, if I catch one?” asked Rylie, who had just turned fifteen.
“Not necessarily,” I explained. “But infections that used to be easily cured are getting harder and harder to treat, which is why Tom and I wanted to be sure that no matter what happened to him with this treatment, the data could be used to advance research so it could help other people.”
Cameron was more direct with his questions over dinner with Tom and me later that year, during our first trip to Vancouver since Tom was discharged.
“What was it like being in a coma?” he asked, shoveling spaghetti into his mouth.
Tom tried to explain, then immediately got choked up. Although he was improving physically, he was increasingly becoming overwhelmed with the terror of his hallucinations and was having nightmares.
“I can’t stop thinking about my dreams,” he confided. “They’re so lifelike. My brain goes right back to thinking I’m in the TICU.”
So did mine.
“It’s frightening not knowing what is real and unreal,” Tom said. “To not be able to trust your brain.”
Tom was relieved to finally be able to talk with us about his experience. He now distinguished between the disease—the Acinetobacter infection and all the rest—which was his alone, and the illness, which was what everybody else around him experienced.
“Every medical case is lived twice: once in the wards and once in memory,” wrote Siddhartha Mukherjee, physician and author, paraphrasing the writer Viet Thanh Nguyen.
For a couple or a family, every medical case is lived twice more: alone and together. Each of us had our own version of the illness experience as it affected us individually. Our shared version as a family was a patchwork of pieces that came together more slowly with time and conversations. It was another kind of healing.
29
GRAND ROUNDS
One year later
Chip Schooley was in his element. Or at least one of them. He was as at home in this cavernous UCSD lecture hall as he was bedside with a patient, consulting from Mozambique, or orienting a new medical resident to the inner labyrinth of the sprawling medical center and adjacent university grounds. Even as he’d prepared for this milestone grand rounds event, presenting Tom’s case for the first time to our UCSD clinical community, he had a ticket in his pocket for a flight to DC that evening. He planned to meet the next day with NIH officials there to discuss funding for clinical research trials so that phage therapy could one day be used to do the most good for the most people.
It was little more than a year from the day Tom had left Thornton Hospital in a wheelchair to come home, and this morning we’d parked and he’d ambled up the grassy knoll to the Liebow Auditorium for grand rounds, no assist necessary. We were there to mark the moment and join Chip at the lectern for the start and close of the clinical presentation to share a little from our experience as The Patient and The Patient’s Wife.
The walk up the hill had been easy enough, but we both had to catch our breath at the sight of all these people, so many of them having had a hand in saving Tom’s life. Randy Taplitz, Kim Kerr, Sharon Reed, Atul Malhotra, Eric Scholten, and several of the TICU nurses as well as Connie Benson, who we knew had partnered every step of the way as Chip had turned their living room into the war room to strategize moves to contain and kill the Acinetobacter. My friend and neighbor Liz Greer came too, taking time off from her job as the pacemaker nurse at the nearby VA. And there, some rows back, looking for all the world like a shaggy surfer who had just happened by, was Forest Rohwer, whose rare expertise in phage purification and his instant willingness to help had made it possible to get the Texas cocktail to Tom in time for the critical first strike.
Each of them knew intimately a piece of the picture that Chip was now about to make whole.
I thought of others on the phage therapy team who couldn’t attend the presentation but were there in spirit: two labs in the crisis collaboration, one team at a university in College Station, Texas, the other at a restricted military lab in Maryland. Carl Merril would likely be chatting with his son Greg and walking Rocky, his steadfast border collie. And the administrative “trail angels” who had seen to it that the documentation required for regulatory and ethics review was done and delivered by impossible deadlines. All told, our threads of emails and texts—thousands of them over the past year—had translated science from bench to bedside with unheard-of speed. Each one of these people, and others we would never know, had been critical to pulling this off.
Our friend and clinical confidant Davey had to be out of town today, but he never felt far from us anymore. Tom pointed out, as he thought of the team effort and this particular duo of doctors: “Chip kept my body alive, but Davey kept my spirit alive.”
The sense of something whole coming into view reached deeper still. During Tom’s hospitalization, especially in some of the most intense or chaotic moments, I sometimes felt myself suddenly detached, witnessing the scene and myself in it as an observer. Not judging, just observing. That frantic bleary-eyed woman in the hoodie, racing after the doctors and Tom’s gurney down the hall for the emergency procedure when his drain slipped? I watched her run. Watched her cry sometimes. Watched her dance by her husband’s bed. Watched her flip into driven-scientist mode and take it too far at times, pushing too hard, snapping at people impatiently or angrily. The sense of fracture between my two selves—the loving caregiver and the pit bull scientist—was always there. Like the shattered pieces of colored glass in a kaleidoscope that just keeps turning, they had always felt fractious and incompatible. Today, as I watched Chip move through his presentation, Tom by my side and the spirit of so many with us, the kaleidoscope suddenly stopped churning and the pieces fell calmly into place. The wife and the scientist felt whole at last, and the tension of the twin imperatives, one to save Tom, the other to generate useful data even if he died—came to a rest, too. Mission accomplished.
This grand rounds presentation was the way that wholeness looks in clinical medicine, dissecting the symptoms, distilling the case, and passing the lessons learned to other clinicians and students. That’s no mean feat with a medical record 3,981 pages long, encompassing nearly nine months.
Biswajit had presented Tom’s case to an equally enthusiastic audience at the Pasteur Institute in Paris in April for the Centennial Celebration of Bacteriophage Research, reaching an international community of scientists and clinicians that included Félix d’Hérelle’s great-grandson, Dr. Hubert Mazure. And just two months earlier, the FDA had hosted a phage workshop open to the public in Bethesda, highlighting both the history and advances in phage therapy. The program included multiple presentations by those involved in Tom’s case, including Biswajit and other Navy scientists, Ry and Jason from Texas A&M, and Chip, all reporting on different aspects of the case. Tom’s case report was published in a subsequent issue Antimicrobial Agents and Chemotherapy, as well as a commentary discussing the case in The Lancet, and an interview with Chip in the Journal of the American Medical Association. The Patterson case was now well documented, with an IV phage therapy protocol available globally to help others.
From grand rounds to the social media grapevine, those lessons were beginning to fill in some blanks with new evidence and possibility:
First, phage therapy warranted a fresh look as a potentially personalized treatment against multi-drug-resistant bacterial infections. More ba
sic research and clinical trials were needed to advance the field, and if those studies were favorable, a new regulatory pathway was needed to bring it to scale.
Second, the medical establishment and funding agencies needed to overcome their implicit bias against the use of unconventional treatments like phage therapy, which was first studied prior to the dawn of molecular biology and thus had suffered from scientific and logistical limitations.
Third, Tom’s case suggested that it was possible to co-administer phages with antibiotics to enhance the effects of both. Another case report from Yale that used phages to resensitize a different bacterium to antibiotics reinforced this possibility.
Finally, the international effort to save the life of a single individual was global health diplomacy in action. Urgent global health challenges require actors at multiple levels and creative ways to maneuver logistical hurdles that impede progress. One month after Tom was discharged from the hospital, a 2016 UN General Assembly Declaration called for multisectorial and cross-sectorial efforts and engagement of all relevant sectors of society—human and veterinary medicine, agriculture, finance, environment, industry, and consumers—to tackle the global superbug crisis. The consensus statement was signed by all 193 countries. With millions of lives at stake due to the growing threat of antimicrobial resistance, this kind of global collaboration is essential.
That complex collaboration could appear deceptively simple in Tom’s case because, in the end, all most people saw was that a very sick man was in the hospital for a very long time, recovered, and went home. Some people called it a medical miracle, and it was. But from our vantage point, we’d seen the constellation of coincidences and variables that could have gone so differently, the teamwork across disciplines and miles that could have easily broken down but didn’t, the just-in-time delivery of the people and resources with a role in this, and we saw each one as a singular miracle in itself.
The Perfect Predator Page 29
