I was still trying to wrap my head around the idea that this pseudocyst had been there even before the trip, for weeks before, and that it was now the size of a football, with some kind of microbe lurking in it. I knew that the doctors needed to know what they were dealing with to decide how to treat it, but there were no rapid tests readily available to identify which pathogen was the culprit. Meanwhile, they’d placed the stents in the cyst to drain into Tom’s stomach, where they hoped the gunk inside could move through the digestive tract so he could poop it out. The plan, the place, and the people were reassuring. But so far, Tom’s condition was only getting worse. At home, I was an expert in global health, but now I was getting a crash course in global illness.
I was scared and needed someone to talk to, but who? It was morning back home. I called my parents and they confirmed that they could extend their stay to house-sit. I called my closest girlfriends, Michelle and Heather, who both lived in Vancouver, but got voice mail.
Then I called my son, Cameron, and told him what was going on. A night owl, he had seen my Facebook posts, so he knew that Tom was sick, but he was shocked to hear how sick. As we spoke, I was acutely aware that it was almost the anniversary of his dad’s death—Steve, my ex, had died of a massive heart attack skiing at Whistler on December 12, 2012. Although we had been divorced for ten years at that point, his death had hit me like a ton of bricks and was even harder on Cameron, who has Asperger’s syndrome. He’d struggled with depression for over a year, but, now twenty-three, he was living on his own and had recently landed a job with a company that hires and trains people with autism spectrum disorder to be software testers. He had just finished the training and was looking forward to starting his first contract. Neither Cameron nor I tend to easily express our feelings—at times we can seem so focused on practical details that we may seem indifferent to the emotional dimension of the moment. But in this moment, I was struck by his empathy and supportive response. He said that he understood and told me he loved me. I wanted to tell him we’d celebrate his birthday soon, but I couldn’t bring myself to imagine two weeks beyond the moment. I always knew that when I married a man two decades my senior, he was likely to die before me. But Tom was the healthiest person I knew. Was.
My cell phone pinged with a text from our friend Davey, who was back in San Diego after his Thanksgiving vacation. Chip had briefed him. Call anytime.
An infectious disease doc who did double time as a researcher in the same department as Chip and I, Dr. Davey Smith had become a close friend in recent years, especially to Tom. He had grown up in rural Tennessee, where I can only imagine that coming out as a gay man while enrolled in med school had taken tremendous courage. Davey and Tom came from similar humble beginnings. They’d met at a party at the home of Chip and his wife, Connie, and bonded over stories about eating roadkill, rodents, and strange game. Tom one-upped Davey with his story of eating a capybara when he and a group of fellow students were starving to death in the Colombian jungle. Davey had been duly impressed; the closest he had come was eating a few possums. Tom and I had attended Davey’s wedding ceremony to his partner, Asher, a year ago, where we had hammed it up with Mardi Gras costumes in a rented photo booth.
I retreated to the hallway outside the rear entrance to the ICU, where it was always very quiet. Davey answered on the first ring, and we skipped the pleasantries. He peppered me with questions. Was Tom septic? Was he on pressors? What are his vital signs? What antibiotics was he getting? He spoke with his typically gentle voice, but I could sense his urgency, worry, and growing frustration that he could not determine how bad the situation was because I could not answer a single question. Hell, I barely understood them. I heard myself giving excuses. They have rounds early morning, before I’m allowed in, so how can I ask the doctors anything? All of the bags on the IV pole have labels in German, so how am I supposed to know what meds he was getting? And what the heck is a pressor? My voice sounded frantic, as if it were someone else’s. The more rapid and shrill I sounded, the more slowly and gently Davey spoke. I had seen him use this technique with a student of ours who had failed his comprehensive exams. I was starting to lose it. Suck it up, Princess, said the voice inside my head.
It was my right to ask questions and get answers, Davey reminded me. I could ask to speak to the charge nurse, or the attending physician. I could ask for a printout of his lab values and learn what they meant. I could take a cell phone shot of the monitors and text it to him and Chip so that they could weigh in.
As Davey’s words started to sink in, my brain fog began to lift. But Davey wasn’t finished.
“Steff, the only reason Tom is still alive is because you got him medevacked out of Egypt. You did that. So trust your gut. Get informed. I know you are terribly stressed out and tired. Tom is in great hands, but he needs you to be his advocate. That’s your job now. That’s what anyone in his situation needs. Do you think you can handle that?”
It was exactly what I needed to hear. Davey was chiding me in a gentle way that only Davey could. Tom had been rescued, and I had been passively waiting for someone to rescue me. No one was going to do that. I’d have to do it myself.
How could something as small as a four-millimeter gallstone create such havoc? After Davey’s pep talk, it was high time to find out. I started by asking Roy, the nurse, how many pressors Tom was receiving. Three. That was “high-pressure support” to keep his blood pressure up, according to Roy, who also brought me Tom’s labs. Although the report was in German, I used Google Translate to figure out most of the lab markers when they weren’t obvious. The lab values that were abnormal were asterisked; there were so many, the page was covered in snowflakes.
While Tom slept, I accessed the hospital’s guest internet connection and read up on gallstones, pancreatitis, and their prognosis and complications. It was a slog. Why had I taken American poetry instead of physiology as an undergrad? Thankfully, Chip emailed me a PowerPoint file used to train med students. It showed the typical anatomy of the human biliary tree—the system that makes, stores, and secretes bile. Simply put, bile is an essential digestive fluid that breaks down fats so they can be absorbed by the body. When something impedes that flow, the imbalance triggers a cascade of complications. The PowerPoint lesson mapped out “the ampulla of Vater,” which had something to do with blood supply to the gut, but which, in the moment, only reminded me of Darth Vader, the Star Wars archvillain.
The connect-the-dots medical picture was taking shape, however. It turns out that gallstones are not really stones. They are solid bits of material in the gallbladder that are made up of cholesterol or sometimes bilirubin, which comes from bile. People who have a family history of gallstones, are overweight, or have high cholesterol are at risk of getting gallstones. And if you’re going to get them, you want them to be big or small, not in between. That’s because the bile duct is five millimeters in diameter, so if you have a stone around that size, like Tom did, it can travel outside the gallbladder and get stuck. That causes a backup of bile, which usually causes pain, inflammation, and sometimes pancreatitis. If the pressure from the fluid builds, it can form a pseudocyst, so named because it is a cyst-like sac, an organic holding tank of pancreatic debris. But unlike a true cyst, the walls of a pseudocyst aren’t made of the same specialized cells. Instead, the sac is contained by fibrous tissue or granulated gunk. For all practical purposes, though, there is nothing “pseudo” about it. The danger is real. Whatever it was that swam in the sludge in Tom’s pseudocyst, clearly they were hoping to keep it contained and drained. The stents were the best hope at this point, but there was no guarantee this strategy would work.
I spied Dr. Jörg Bojunga, the attending physician, and flagged him down as he passed by. He waited while I degowned and dutifully washed my hands before stepping into the hall. He was tall and wiry, with a white coat that hung a tad too short on his lanky frame.
“Now that the GI doc removed Tom’s gallstone,” I asked him, “does that mean he
is on the mend?”
He shook his head. “That could have been the case if we had caught your husband’s biliary blockage early, but now that the pseudocyst has formed, grown so large, and created so much inflammation, it could take months to resolve, and that’s if we are lucky.”
Months?! I was stupefied, and what did he mean by “if we were lucky”? Enough with my head in the sand. I had to know. “I read that the mortality rate from gallstone pancreatitis is about 50 percent.”
Dr. Bojunga looked uncomfortable but answered truthfully. “We are hoping Dr. Patterson will recover from septic shock. He also has metabolic acidosis, due to an excess of carbon dioxide in his blood, which is why he is receiving oxygen. As for the mortality rate—it is much higher than that, I’m afraid.” He looked at me sadly, with the compassion that any ICU doctor must summon on a daily basis. “Your husband’s condition is grave. With these sorts of complications, mortality is at least 80 percent. Likely much higher.”
Much higher. The words reverberated in my brain like a pinball machine.
8
“THE WORST BACTERIA ON THE PLANET”
Goethe University Hospital, Frankfurt
December 5–11, 2015
With Tom sleeping soundly, I left him a note while I went to eat and gather my thoughts. The crisp air burned my lungs during my walk back to the hotel. It was below freezing, but I was already numb. I watched other pedestrians scurry by, carrying brightly colored presents from the nearby Christmas market.
I wanted to rewind our lives to the Last Supper and skip it. Or go back to a month earlier when we might have paid attention to some early sign of a gallstone and done something about it. Or to the night at home with my folks before we left, when we’d laughed at my mother’s superstitious warning, and not go. I just wanted to know I’d laugh with Tom again.
My spirit sagging under the weight of scientific and clinical data, I decided it was time to message my go-to-guy for all things holistic—Robert Lindsy Milne. An uncanny “empath” who feels he can sense someone’s physical and emotional state from a distance, he’d been something of a life coach for the past twenty years. In times of crisis I’d found that Robert’s intuitive sense often helped me sort things out and find my way. I didn’t know any scientists who consulted a psychic-intuitive counselor. I couldn’t find any data to support that it worked, but maybe the science would bear it out someday. And let’s face it, I was desperate. I messaged Robert on Facebook, and he responded instantly via Skype video from his home office in Toronto.
“What took you so long?” he asked, a little indignantly. I don’t know how old Robert is, but he has looked a spry forty-five to me forever. Just the sight of his face boosted my spirits. I brought him up to speed on Tom’s status and the sobering prognosis I’d just heard. Robert thought a minute, and then rubbed his hands across his face before responding. “I don’t think this is his time. But he is very weak, and he needs energy, more than you alone can give him.”
He moved closer to the computer screen and adjusted it so he could look me squarely in the eye. “I would call his daughters immediately and tell them that their father needs them. They should come right away. Just knowing they are coming will give Tom a big energy boost, and he needs all he can get right now.”
I paced the floor with a glass of wine from the gift basket. “But I’m not their mother, Robert. How can I tell them what to do? And besides, they’re adults.” For the eleven years of our marriage, I’d walked a fine line as the girls’ stepmother. As a family, we’d worked on that whole “blended extended” idea. I’d developed a respectful rapport with their mom, Tom’s ex-wife, Suzi, and the girls had their own relationship with each of us. When they were younger, we had all vacationed together so the girls wouldn’t have to choose time with one parent over the other. Through the years we’d provided parental backup for one another in times of crisis. Now that the girls were young women with lives of their own, I was keenly aware of respecting the boundaries as a motherly adviser. I’d even managed to take on the role of “stepmother of the bride” just a few months before, when Carly and her husband, Danny, had gotten married.
So far, I hadn’t screwed it up (at least not hugely), and I didn’t want to start now.
Robert was adamant. “They are waiting for the signal from you. Trust me on this. And one other thing—take care of yourself. You’ve been managing this as if it’s a sprint, but it’s not. It’s a marathon. And when you are running a marathon, you conserve energy. Pace yourself.”
My cell phone rang—Chip—and I logged off the Skype call with Robert to take the call. I told Chip about my conversation with Dr. Bojunga. Was it really true that Tom’s chances of pulling through could be less than 20 percent? He didn’t answer me directly.
“I don’t want to scare you,” Chip said with his soft Alabama drawl. “But his condition is very serious indeed. I’m hoping that the culture they took from the pseudocyst grows a garden-variety microorganism that they can treat. If not, things could get much worse. I’ve hesitated to suggest this before, but Connie and I both think it’s time to call Tom’s daughters. Just in case.”
Dr. Connie Benson, Chip’s wife, was also an infectious disease doc. She had led the largest network of AIDS clinical trials in the world, and when Chip was in doubt of anything, Connie was his go-to.
I hung up the phone, rattled, and took a big gulp of wine. Several of my most trusted friends and advisers—two gifted physicians and the other a gifted intuitive—in very different ways were reaching the same conclusion on the singular point that it was time to bring Tom’s closest family to his bedside. Within a few hours, Frances and Carly were booked on the next direct flight from San Francisco to Frankfurt, along with Suzi and Danny.
The next morning, I arrived at the Uniklinik by eight a.m. Tom was still on his oxygen mask, but he was breathing heavily. His voice sounded hollow and raspy, and his eyes roamed the room as if he were seeing ghosts. He faded in and out of consciousness, but in a wakeful moment I squeezed his hand and told him that Carly, Danny, Frances, and Suzi were all on their way and would arrive later in the day. His smile did not reach his eyes.
“Am I going to die?” he whispered.
This was the question I had been dreading. I took a moment to think about what to say. Should I tell him the truth, or sugarcoat it? A few years earlier, Tom and I had sat around the firepit in our backyard, and he told me what it was like when his mother was dying of breast cancer in her mid-fifties. Tom was in his mid-thirties. Although it was clear to everyone else that she only had a few weeks left, Tom’s dad, by this time retired from being a motorcycle cop, was in complete denial and refused to talk about it. One day, Tom and his dad dug a hole in the front yard to plant a tree while his mom lay inside the house in bed. Concentrating on shoveling dirt, father and son finally spoke about the inevitable, neither looking the other in the eye. Tom told me that he wished that he and his dad could have spoken more openly so that they could prepare for her death. When she died a few weeks later, their history of avoidance only made her loss harder on both of them. Tom would want me to tell it to him straight.
I stroked Tom’s face. “You are fighting for your life,” I told him. “Robert says it isn’t your time, but if you want to live, you are going to need to give it all you’ve got.”
His eyes closed and he lay so still, it was hard to know if he could stay in the fight.
Later, Carly and Danny arrived at the hospital, coming right from the airport. Carly bounded into the room and gave her father a huge hug. Her dreadlocks were long gone, but she still had her long dark hair, which draped around Tom as she laid her head on his chest. Tom smiled and stroked her hair and sighed. Clearly, this had been the right call by Chip and Robert, at the intersection of medical and mystical wisdom.
While Carly and her dad reconnected, I gave Danny an awkward hug. Since he was a musician, I had bought him a pair of Guitar Hero underwear as a gag gift for his Christmas stocking a fe
w years ago, after Carly and he got engaged. I didn’t know until recently that in small words next to the guitar, the words rock hard also appeared. I hadn’t been able to look him in the eye since.
Soon afterward, Frances and her mother, Suzi, arrived. While Suzi waited at the foot of the bed for her turn, Frances approached her dad, her eyes full of tears, and held his hand. Her long brown hair was tied back in a clip, and her face was almost as pale as his. Tom grinned for the first time in days, revealing furry teeth.
“Group hug!” Carly exclaimed, and we huddled together at the foot of Tom’s bed. All of us were teary now.
Tom’s room was suddenly full of the closest people in his life, but he scarcely noticed. He dozed, in and out of consciousness, mumbling unintelligibly, and sometimes shouted aloud at no one in particular. At one point, he asked when the train was coming and how long we had been standing there waiting. When I pointed out to him that there was no train and he was actually lying down, he opened his eyes and looked around with amazement. Danny astutely picked out why Tom might have drawn this conclusion.
“The cardiac monitor alarms—they sound like train signals,” Danny said, pointing to the tower of medical equipment. “Or at least they do to me, and probably to Tom,” he suggested. Tom opened his eyes briefly and nodded.
The group of us took turns visiting Tom over the next two days.
It’s interesting how low the bar is for “looking better” when the baseline is that someone is lying inert and largely unresponsive in a hospital bed. We’d speak to him, and if we got a hand squeeze or saw his eyebrow move, our hopes would spike that he was coming around. It’s ludicrous, in retrospect. But having us all there to share the bedside vigil allowed us to share this small bit of hope and comfort and take turns at catching some shuteye.
The Perfect Predator Page 7
