Twelve Patients: Life and Death at Bellevue Hospital (12 page)

The secretarial staff, I would learn, nominally gets to know you after a few sessions. Some pretended to recognize me and nodded between personal phone calls as Diana and I hunted for a couple of seats together between other patients. In the chairs around us, other patients were being treated for breast cancers, lung cancers, prostate cancers, metastases, bone tumors, and brain cancers. It wasn’t hard to figure out who had what diagnosis. Wigs and scarves covered women’s baldness. Others had decided it was a badge of honor; for others still, it’s a time to suspend the vanity. The head and neck cancer patients had rounded hair loss at the backs of their heads and their beards from circumscribed radiation fields. There was no privacy among my fellow patients though everyone came in surrounded by a protective bubble. I looked through them, subway etiquette. Their thoughts were buried in impenetrable private spaces. The door opened for the next patient and the 747
whir
of the Varian machines washed into the room, like the stifling humid heat on an August day. As the patients were called they were wheeled, shuffled, or limped into the linear accelerator rooms. This was a sub-basement after all. The room was about therapy, suffering, dying, reducing pain to manageable levels. Diana sat with me day after day, she never left my side, but we didn’t talk when we were there. We got in and we got out. The less said the better.

My Frank-o-phile, Sinatra-dispensing Dominican radiation tech
picked me up in the waiting room, led me to a changing room, and showed me where to leave my shirt and jacket and put on the standard hospital gown. Another patient was in the room changing back into his clothes and we nodded at each other, a quarter-inch inclination of our chins. He was skeletal; his clothes hung off his body as if he were a scarecrow. His considerable dignity remained intact. He took his time getting street-ready, checked himself in the mirror, ran a comb through the few strands of remaining hair, and walked out of the dressing room erect. From the cavernous echo of his cough and the darkened skin within the triangular radiation markings in black ink on his back, his lung cancer was advanced. You cured lung cancer with surgery if you were lucky; otherwise it was palliation, buying time and reducing pain. I had walked through this too many times with too many patients over too many years. What to do, how much to do, and when to stop were existential questions. There were no easy answers, no facile instructions, no algorithms to follow. Each case had to be hammered out face-to-face. Sometimes you got lucky; most of the time the house collected its money and went home.

I would see him three more times over the next two weeks and then he disappeared. I didn’t speculate.

A few ring-a-ding-dings and one Nelson Riddle arrangement of “The Lady Is a Tramp” later, radiation was over. I dressed and picked Diana up in the waiting room. Back in my suit and tie, with my briefcase and laptop firmly in hand, Diana and I took the elevator to the sixth floor for chemo. The cancer center became our second home for the next few months.

The check-in at the desk was perfunctory. I looked normal and felt fine. How different it would be in two weeks. In a few minutes, an aide came to take us back into a warren of cubicles separated by head-high greenish tinged glass. The cubicles were rectangular; each had a recliner and a chair for a guest. There was a small rolling black stool for the nurse, a cabinet for supplies, a red plastic container for used needles, and a small TV that came out of the wall on an adjustable arm. A nurse welcomed me to the unit and made sure I was comfortable. We went over my identifiers, my diagnosis, and the treatments.

As I settled into the recliner with my suit jacket off and my sleeve rolled up on my left arm, a nurse chatted with me while expertly slipping in an IV and taping it into place. She drew some blood for the lab. Another nurse came in with a liter plastic bag filled with a saltwater solution and another, smaller bag—the size of a plastic lunch bag—with my name on it and “Platinum” on a white sticker. Both went through the exercise of double-checking everything, then hooked the platinum to the larger bag now running quickly into my vein. I also received an intravenous dose of steroids and some pills to prevent nausea.

Diana sat in the extra chair and worked at her computer, her home office for the duration of the chemo. I knew she was anxious to get to the hospital to meet Mateo and be with the kids. She talked about buying flowers on our way over. I, too, was getting antsy and decided to explore the unit. I unplugged the IV, rolled it into the main intersection where the nursing station was located, and began a circuit around the infusion center—one that I would come to make many times. There were old and young patients. Skinny and fat patients. Orthodox Hasidic Jews, Catholics, and agnostics. Those who looked like they were on their last legs and those who might have been just visiting, in street clothes, looking fit and trim. Nurses buzzed in and out checking in on everyone. One nurse whom I had known from her time at Bellevue came up to me. She had heard about my cancer and told me she would make sure I was getting the best care. I knew she had had lymphoma and been treated herself. The nurse taking care of me had lost her husband, the love of her life, to cancer. She had come out the other end and switched to the infusion center, feeling a tug of duty to give here what she had learned personally. And in some way it allowed her to continue to care for her dead husband. She had no self-pity, but there was a deep sadness behind her smile.

My oncologist stopped in about halfway through the infusion. She wanted to see how I was doing. The first day is a big day. The truth was that I was developing a metallic taste in my mouth.
Hello, Platinum, my old friend. You’ve come to talk to me again…
It had been years since I’d experienced platinum. When I was a resident-in-training on
a rotation through the oncology wards, it was notorious. Patients on platinum would be in the hospital for weeks unable to move. Sedated patients lay in hospital beds without moving, unable to eat. They vomited at the slightest provocation. It was as if the ward were an ocean liner and all the patients had severe motion sickness. The ship was keeling sharply and the passengers were lying motionless on white sheets. Staff tiptoed in and out of the rooms without a rustle of the stagnant air. The chemo hadn’t changed, but the newer anti-nausea medications made outpatient care possible.

I was nervous about where the chemo would take me, but the routine, the nurses, the location made it tolerable. I was surrounded by part of a family of people I had known for a dozen years. Privacy for me at this point was irrelevant. Being cared for by people I worked with and trusted outweighed any perceived benefits of a new institution where the relationships had to be negotiated and trust had to be built. These things took time and energy, both of which would be in short supply. At least I went into my diagnostic and treatment journey knowing the Virgils who would be taking me by the hand.

We finished up our first day on the sixth-floor chemotherapy infusion suite in the late afternoon. By mid-October the sun was setting earlier and the air was cooler outside, sweater weather. We gathered up our things, said good-bye to the nurses on the unit, went out to 34th Street, and treated ourselves to a cab to Bellevue, picking up some flowers on the way.

When we got to the obstetrical floor, we retraced our steps from the early-morning hours. Our family and its newest member were in the nursery. Mateo was nestled on Gladys’s chest, a contrast in colors. Mateo was very white, and everyone looked on him in wonder. Esther stood next to us as we bent to kiss Gladys and the baby. “Don’t worry,” she reassured us, “he’ll darken up.” Diana laughed and cried. Alexei was obviously exhausted and exhilarated at the same time. His life had just changed completely. No more the guy in his twenties who did what he wanted when he wanted. He was married to a lovely strong woman, the mother of his son. Marina was thrilled, even though at the moment she could not foresee that this young boy would hang on her
every idea as she took him through museums, zoos, and Washington Square Park, where he would play in the fountain. “Nini, Nini,” he would be yelling every time he saw her, forgetting the rest of us. I held my grandchild, too many emotions to catalog moving through me. My family looked at me, expectantly. I smiled, weakly. I didn’t want them to see I was frozen. I knew that the thoughts and fears and emotions swirling around me would confine me to my private space in the midst of a crowd. My thoughts were elsewhere as my family and friends and colleagues celebrated around me. They would be elsewhere for quite some time.

As the fall progressed, the combination of having my throat blowtorched by high-energy electrons and the chemo would force me to abandon my long-held antipathy toward medicating myself for pain. I learned to grind up narcotic pills and inject them into my feeding tube. I would soon have several narcotic patches on my arms, shoulders, or chest. I began wasting away. My weight, which normally hovered around 155 pounds, dropped to 123. When my renal function took a hit from the chemo, I had special liquid formula delivered in crates that I put in a 50cc syringe and slowly injected into my stomach tube every few hours.

At night, Diana and I watched the 2008 electoral campaign unfold in real time. We watched the five seasons of
The Wire
, me dripping Ensure into my tube, Diana eating cold poached salmon and sautéed spinach that she bought at the store. The smell of food made me sick, so we couldn’t cook in the apartment. After the elections and Obama’s victory, winter descended on the city. The days stretched out interminably. I had fevers every day, my muscles evaporated, and I fought to keep the feedings going, padding around the apartment like an animal in a cage.

I got weaker and weaker. When my white cells fell to near zero from the chemotherapy, I was hospitalized for sepsis. Marina would come and read to me every day. She sat on the edge of my bed and held my hand. Alexei would draw cartoons on the whiteboard reserved for nurses. Diana sat with me day in, day out. It didn’t matter anymore. As I received blood transfusions and a drug to stimulate my white cells,
I decided that I had had enough treatments. I refused further radiation and chemotherapy. I lay in my bed and watched the events around me—the distress of my family, the helplessness of my doctors—without anxiety, comfortable that I had made the correct decision.

Where is it written that a good death is bearing gracious witness to the suffering caused by an errant cell that has exploded inside you? Isn’t this meeting other people’s expectations? Isn’t there a time limit, a statute of limitations on expectations? In your final moments, aren’t you free to pursue your own ends by the means you choose?

My doctors couldn’t convince me to change my mind, but, luckily, Diana did. From my mental cocoon in the hospital bed, I could sense her at my side. “You’re going to finish the treatment,” she said softly. I did not have the energy, or perhaps the will, to disagree. She wheeled me down herself to finish my radiation treatments in the basement of the hospital.

Things did not get better anytime soon. Another hospitalization for implacable nausea and vomiting. I took myself off the narcotics and my withdrawal symptoms confounded everyone except Beverly, my nurse practitioner. “You are going through withdrawal, Eric. You tapered the narcotics too quickly.” She handed me a new schedule and put me back on the patches. A few days later, I found myself on a stretcher rolling into St. Vincent’s, where an emergency attending asked me who I was, where I was, and what date it was—none of which I knew—as he sutured my forehead.

Diana had left the room to make coffee when she heard a thud and found me unconscious in a pool of blood next to the bed. A CT scan showed four skull fractures and various intracerebral bleeds. I was transferred back to university hospital on the neurosurgical service, where they watched me for ten days. A cardiologist slipped in a pacemaker, deducing a long pause in my heartbeat from the chemo. The entire world slowly turned on an axis miles below my hospital bed. Any movement increased the rotation. I lay still. Morphine and Ativan erased thinking. A depression descended imperceptibly, a twilight without beginning or end in the dimmed lights and quiet of the nights, between the beeps and blood pressure checks, and took hold.

Night terrors invaded my sleep. In my dreams, I replayed the lives and deaths of my patients. I lived instant playbacks of wrong decisions, lives destroyed, raw fear. A dying patient had once told me, “In the dark night of the soul, it’s always three o’clock in the morning.” But now my treatment would leave me shaking, sweaty, and kicking. Diana rubbed my back to calm me and whispered my name. “It’s all right,” she would say, “you’re all right.” She would hold me as I went back to sleep. I don’t know how or if she slept; she seemed alert to my every movement. I was living in a state of nightmares that could only be compared to status epilepticus—unending seizures.

By spring, I could shower by myself. The hot water sluiced over my skinny body. I still couldn’t eat, but Diana took me to our house in Tepoztlán for my sixtieth birthday. I didn’t want to go—I pleaded with my doctors to tell her I was too weak. They assured me that I could make the trip, that it might even be good for me. During the warm days on our terrace in Mexico, I began to eat again. I began to talk and even smile. By the end of the week, I was off the feeding tube.

Back in New York, soaping myself one morning, I felt a coin-size, slightly raised irregularity on my right outer thigh. Using a mirror, I detected a dime-size lesion with a steel blue lower edge. A melanoma. My dermatologist biopsied the lesion, and a few days later I was back in the hospital for a “deep and wide” excision; my right groin nodes were biopsied as well. By this point I was inured to cancer diagnosis and metastasis. Dan Roses, my surgeon, took out the stitches and told me I would be okay. He got everything. But I wasn’t listening anymore. If death was coming for me then I was ready, if not exactly willing.

It took me at least two years to make it back emotionally. Persistence in the original lymph node picked up by a routine PET scan a year after successfully finishing the chemoradiation bought me a neck dissection. Nobody told us about this phase of the illness, and it’s probably just as well. What is true is that even your doctors don’t know the time it takes to partially recover. My survival strategy had been to withdraw deeper and deeper as the life force receded. All my unseen ties to outside life were cut. All my attachments fell away. This period was very painful for my family. I was an absent husband, an absent father.
Their own lives had been put on hold. Diana tried to keep a foothold in the normal world by preparing and teaching her graduate classes. Alexei and Gladys had recently gotten married and were expecting a baby. Marina was in her senior year at college yet spent much of her time looking after me. Now they tell me they remember very little of this period. From a running start we jumped off the cliff October 13, just when Mateo came squawking into the world.