In Shock Read online

  I gave in and called my surgeon. “I see them. Where do you want me to go?”

  “They’re expecting you in interventional radiology. Third floor. Go there,” he instructed. I called my division head and asked that he find coverage for my ICU as I walked to the elevators.

  For the next three hours, a team of people clad in leaden aprons tried to thread a catheter as fine as a piece of string from my groin into the “feeding vessel” that had sprouted each mass. To get there they mapped the vast network of my body’s vessels using contrast and radiation in alternating bursts. We did all of this without any sort of sedation, with my blood pressure running too low to allow for it. I asked them to adjust the angle of their large screens so I could watch the procedure in real time, out of lack of anything else to do. The screens were mounted just above the cool steel table that I lay upon. It was beautiful technology, so precise and elegant. When they accessed the mass, they injected it with millions of tiny plastic spheres intended to deprive it of its blood supply. That was what was referred to as embolization. They succeeded. The masses were strangulated and neutralized. They would never again be allowed to cause me to bleed to death.

  Watching it all, I felt an initial sense of letdown that is characteristic of any act of revenge. Whatever we had contrived to do to those tumors, it would never be as awful as what they had done to me. It couldn’t be.

  “Well, you’re safe for now,” the radiologist told me in the post-procedure area.

  “But these masses,” the surgeon added, “I talked it over with the liver surgeons. They think, we all think, we have no way of truly knowing if they are cancerous, unless we take them out. Even if they aren’t they carry a small but real risk of becoming malignant. And the risk increases with each subsequent year. You need to let them take them out.”

  “It’s true,” the radiologist added. “We do the embolization to help the surgeon. So that you won’t bleed out when he does the liver resection. The surgery can be really bloody otherwise.”

  It was not my favorite visual but it was effective. I agreed, the masses would have to come out.

  * * *

  I sat, gowned, on an exam room table in the liver transplant clinic, shaking my head. Something about the idea of transplantation always frightened me. The complete replacement of an organ by another, the abject dependency on a piece of another human. Life post-transplant seemed almost like an after-life. The transplant recipient representing death resurrected. And while I knew I wasn’t there to get a transplant—that I was only there because of the level of skill this group of surgeons possessed—I couldn’t shake the sense of inescapability. From the very beginning, when transplant surgery’s name was first invoked, it was destined to be. Though it had been over a year since I heard “I’ve asked Transplant to see you,” in this moment, as I sat waiting for them, it seemed totally inevitable.

  When the nurse practitioner came in, I was immediately impressed by her level of preparedness. She knew every aspect of my history that was available to her by chart review and discussions with the referring physician. And yet she didn’t presume to know my version of the events.

  “My goodness, you’ve been through a lot!” the NP exclaimed on meeting me. “I’m so sorry you’ve had to go through all of this.” She paused, then introduced herself and her role on the team.

  “I think I have a sense of what has happened to you over the past year, but will you tell me from your perspective, so that I know I’ve got things right?” I was struck by how perfect her introduction was. It was knowledgeable yet humble, empathic and well intentioned.

  She made it easy to share my history, as she reconciled my narrative with the colder facts and dates in the chart. Her questions were issued with a genuine curiosity about my health and well-being. She paused and looked directly at me.

  “I am so sorry you lost the baby,” she said.

  “It’s OK.” I gave my reflexive answer, prepared to launch into my preformulated rebuttal that centered upon how fortunate I felt to be alive. It was a rehearsed response intended to put others at ease, and as such didn’t actually even attempt to represent the whole story.

  “It’s not OK,” she said, stopping me short. “It will never be OK that you lost the baby.”

  It was the kindest and most loving thing she could have said. She acknowledged a loss that was abstract to her, but so very real for me. The simplicity of the statement, of telling someone you are sorry for their loss, or that it isn’t OK, can feel weak and puny in the face of suffering. We avoid it, feeling impotent, knowing that our sentiment won’t fix anything. And we want to fix things. It is so vanishingly rare that what you say can actually fix something for anyone. We cannot change that which is true and sad. But we can acknowledge it. We can humbly witness suffering and offer support.

  When she had a solid understanding of my case, she excused herself to bring in the liver surgeon.

  When the surgeon entered, it was if he appeared straight out of central casting. Having worked in the same institution, we had occasionally passed each other in the hallways so he was familiar, but we had never formally met. He was immaculate and well dressed, with an easy way about him that put us at ease. He had the same first name as my dad, who had been dead seven years. He sat down and faced us, only looking at the computer when he wanted to check some detail. He was articulate and generous with compliments. He praised my strength, my other physicians and my family for their support. He scrolled through my many CT scans, pointing out small details others had failed to recognize.

  “You know, you’re very lucky you survived,” he told me, as if he were sharing a deep secret. “Ruptured adenomas are almost universally fatal.” He pulled up a case-series in the literature, which compared different management algorithms, none seeming to confer more success than any of the others. “See this”—he pointed at the paper—“forty-five cases reported, and most of them didn’t make it. That’s why we do things differently.” He went on to describe how he’d partnered with the interventional radiologists to preemptively ablate the lesions, which I had just had done. From the date of the ablation we would wait six weeks for the tissue to calm down prior to actually undergoing the surgery. It was an innovative, collaborative approach.

  He went on to describe other novel strategies, a robotic approach they could sometimes utilize for the liver resection, with small laparoscopic ports for access rather than a large vertical incision. It would be a big surgery, he advised, with a lengthy and difficult recovery, but he would do everything in his power to make it as easy on me as possible. He would worry about every possibility and plan for every contingency so that I wouldn’t have to. I absolutely believed him. If he had wanted to take half of Randy’s liver out as well, I would have let him.

  Despite the shiny trust engendered by the surgical team, the six weeks leading up to the surgery were fraught with worry. Though the team resisted putting a fine point on it, I projected an estimated risk of death associated with the liver resection of around 25 percent. It was likely an overestimate, but this figure hung heavily in the air as I tried to get on with my normal life. It’s an odd thing to voluntarily agree to walk into a room that you believe you have only a 75 percent chance of walking out of. But I knew there was a shoreline on the other side that I had to leap across to get to. This surgery would close the chapter on the past year and hopefully leave me well enough to lead a functional life. To be of use.

  My worries had worn themselves thin by the day of the surgery. That morning, I felt I had the easiest job of all. I arrived still half-asleep in pre-op, was briefly interviewed by the anesthesiologist, had intravenous access placed and said my good-byes to my family, who would sit anxiously in the waiting room for the next seven hours. I received a calming sedative as I waited to be wheeled into the OR.

  At hour six, Randy left the waiting area to get coffee. In the elevator, he received a phone call from my mom telling him that the waiting room attendant told her to tell him to �
�return immediately.” He naturally believed I had died.

  The attendant had actually only wanted him to return because the surgical team had advised her that they were about to come and update him. Six years later, he still hasn’t recovered fully from that phone call. If you were to ask him about that day, that one phone call is what he remembers most clearly.

  The surgery was far more technically difficult than they had anticipated. Though they had tried to accomplish the resection with a minimally invasive approach, using robotic arms through small ports in my abdomen, they had to convert to a fully open approach with a long 18-inch incision. The bleeding event one year ago had left my liver encased in a thick rind of bony substance, an accretion of calcium-like cement. They had had to chip away at it, millimeter by millimeter, to free the segment of the liver they had come for. There was significant blood loss, and it took some time to gain control of it, but I was alive and being moved from the OR to post-op. My family could see me shortly.

  Randy was led back to the curtained post-op area. I felt his hand on mine before I opened my eyes. He was always right there, whenever I awoke. I could count on that. I tried to roll toward him and felt a sharp stinging reminder of the surgery alight in my belly. I moaned.

  “Are you in pain?” he asked sweetly.

  There was pain, of course, post-operatively. The long incision stung and my abdominal wall felt a deep soreness that came from being spread open by retractors for hours. “A little,” I answered.

  The pain deepened over the course of the night. Once settled in my room, I was asked to rate it on a scale of 1 to 10, and I replied completely honestly, “It’s about a 5 right now.”

  Randy attempted to explain to the nurses what he understood of my temperament by now. Namely, that I had a skewed pain scale. I had truly experienced shattering pain, and that had cemented my scale in place. The pain I experienced that first night had informed my understanding of what a 10 should signify. Ten to me implied absolutely unsurvivable pain, portending imminent death, with organs being ripped from their moorings. By my self-imposed criteria, a 5 was pretty brutal. But no one else seemed to think so.

  “So, it’s manageable,” the nurse replied.

  “I don’t know if I would say that.” I was confused by her reframing an already subjective measure into words I wouldn’t have chosen.

  “You said it was a 5,” she countered.

  “It is,” I replied, knowing we were not understanding each other.

  “OK, well, 5 isn’t that bad now, is it?” she stated, adding, “You did just have surgery, you know.”

  My face flushed, as I felt the sting of her condescension. I began to get anxious, worried that my pain wouldn’t be controlled and by extension, the night would be terrible, like the other nights before. I wondered if I should have just inflated the value.

  She approached me with a set of supplies, ready to draw labs.

  “No.” I held out my hand as a signal to her to stop.

  “You are refusing lab draws?” she asked with an accusatory tone.

  I shook my head. I didn’t have the words or the energy to say that I just needed a moment to regroup, that I couldn’t take another stick or multiple sticks trying to get blood when I was already in pain.

  “Fine.” She gathered her supplies and left the room.

  “Your patient is being difficult,” she announced to the resident, loudly, within earshot of my room, as she slammed the chart into the slot on the wall.

  I didn’t understand how things had deteriorated so quickly. I wasn’t trying to be difficult. The label stung in a way I hadn’t expected.

  Difficult. How many times had I used that label to describe a patient or a patient family? More than I’d care to admit. We label patients. We label them as cooperative, or drug-seeking, realistic or difficult. It functioned as an abridged report to our colleagues of what to expect.

  “Difficult” was a shorthand for “The patient is not going along with the plan. I have a good solid plan, and they aren’t on board.” I wondered why we ever presumed that our plan should be the barometer by which we measure compliance. Why our agenda was preformulated and not collaborative. Why we insisted on creating a dynamic in which one person wins and the other loses.

  In that bed, in pain, I felt terribly, frighteningly vulnerable, dependent on the care of strangers for my most basic needs as well as the most complex care. I felt powerless in a way that is impossible to imagine, from a privileged position of wholeness and well-being. I know this because after this failure, I pathetically tried to ingratiate myself to the team. I believed that I needed to make them like me in order to care for me. I believed I had to earn pain control through good behavior. I felt I had to prove to them that I was deserving.

  Our patients are aware of their labels. One of my patients, a chronic methamphetamine user who had been clean for a number of years, often occupied a bed in our unit. The last time I had seen him, he had just had surgery to remove his gallbladder. I visited him immediately after the procedure and he was in obvious pain.

  “Do you need something for pain?” I asked. “You look miserable.”

  “Nah,” he said dejectedly. “With my history, I know I can’t ask for anything. They just assume I am drug-seeking.”

  “No, that isn’t true,” I offered. I wanted it not to be true.

  “It is,” he stated, matter-of-factly. “They might give me something because you’re here, but once you leave, I’m just another addict looking for a fix.”

  Addiction isn’t the only thing that is sometimes simple and sometimes complicated. Caring for each other is too. What was revealed to me through my pain was a gift. A gift of self-knowledge and past failure. I had gotten so much wrong. How did I not know to stay out of judgment? Why did I ever assume I knew something about my patients just by reviewing their chart? Our assumptions about others said so much more about us than about the people we were judging. We didn’t know. It’s no one’s right to define the parameters or prerequisites of someone else’s suffering.

  The masses were sliced and sectioned in the lab, stained to evaluate for cancer cells. None were found. My pain came under adequate control, and I was discharged to a recovery with a steep slope toward wellness. One of the unanticipated benefits of having half of my liver chipped out with a chisel was that much of the pain I had endured with just breathing receded. My diaphragm no longer had to move against an unyielding rock. Within six weeks, I achieved something that once seemed entirely out of reach. I would be almost pain-free most days. I began to think beyond the upcoming week when I considered the future. I began to believe I might still be present in a year or two, or five.

  “So, just theoretically, if it was never HELLP syndrome, if it was always just the tumors, and now they are gone, does that mean it’s possible to safely get pregnant again?” I found myself asking.

  None of my doctors particularly enjoyed this question being posed, theoretical or not. I got replies that were noncommittal: “Wow, are you considering that? After everything you’ve been through?” Or, “My goodness, you’re brave.”

  I wasn’t sure if I was considering it. Or that I was brave enough. I was just noticing a window where I thought there had been a wall.

  Eight

  Censors of Light

  The optimism I had about the future dissipated as I again returned to work. I found I was still telling time by last year’s calendar. I’d peel up the square on any day, and there was the loss, the due date, the scar. And every day that I walked back into the hospital, I felt I was visiting a memorial. The place I worked was also the place where everything had slipped. I rounded on patients cared for in the room where I had lived, marveling at how different it looked from the outside. Different and yet the same. I met with families in the waiting room where my family had waited to hear if I had survived the emergency surgery. And just like the surgeon who had been surprised to see me take my first steps, I kept encountering my own ghost.

&nb
sp; I noticed things I hadn’t before, when I was just a doctor. Like the anxious stillness that seemed to be common in waiting rooms, how the normal range of movement there was restricted, even micro. A tremoring leg. Teeth mindlessly edging a nail. Thumbs sightlessly paging through newsfeeds and magazines, rendered blind by the normalcy of the curated content. Restless family standing to blandly engage the vending machine before accepting an utter lack of appetite. The real movement all happened internally. Every worry, regret and desperate prayer swirling and flashing with the momentum of colliding stars. And the vastness of all of it, of whole lives being revisited and prematurely mourned, the anticipatory grief leaking out, condensed into a tear or a sigh.

  I encountered the family of my HELLP syndrome patient in the waiting room of the surgical ICU most days. In her room, an endless loop of Johnny Cash songs played on a stereo. Swelling in her brain had long since crushed the web of neurons that housed memories of the music, or dancing. She remained yellow and bloated, violated by tubes and drains. She had been transferred off my service when she required emergency surgery to clean out her abdomen from the corrosive blood. She’d required the surgery I had feared the most. Her father and husband were no longer waiting for news so much as they were allowing the blunt reality to encase them and resurface them into new, harder versions of themselves. They sat, side by side, like stone statues. She was never going to recover. She would die before Christmas that year, her obituary recalling her daughter and her love of country music.

  I would sit and visit with the family, useless but familiar. I’d ask what they were hearing from the team, and they would shake their heads as if to release the memory of the doctors’ words from their ears. Instead they would sigh and pull out their phones to share pictures of baby Charlotte, the child she’d never know, suckling on hope and growing steadily in the shadow of her ghost mother. I’d be so thankful that she existed, to anchor them and physically embody a future.