Twelve Patients: Life and Death at Bellevue Hospital (11 page)

The most common SCC cancer is cervical—at the cervix, or opening of the uterus. If a Papanicolaou (Pap) test picks up a case, then freezing the tumor cells or a surgical approach is curative. Unscreened populations of poor women delay diagnosis, leading to a miserable death. The discovery of the relationship of the HPV virus and cervical cancer and the subsequent development of an effective vaccine was scientific medicine at its best. The endless debates over the vaccine, however, have been politics at its worst. The issues of affordability and dissemination, false fears of the vaccine having some connection with autism, and teenage sexuality quarrels were raised by opportunistic politicians who ignored history. Vaccines work. Think of polio, tetanus, and measles.

SCC had changed a lot in recent years. It wasn’t confined to alcoholics and tobacco abusers. Younger patients with no risk factors were presenting to physicians and dentists. A teenage girl in the hospital
with this disease had a metastasis to her foot. She didn’t respond to chemotherapy and died rapidly. We were stunned by this new incarnation of an old disease. It defied the smug thinking of the careful, clean-living, safe-sex-practicing among us who equated cancer with bad habits, lifestyle excess, personal (ir)responsibility, or a suspect genetic pool. Cancer is never neutral. It’s fully loaded when it comes out of society’s closet—an unmitigated failure next to the current complex heroic ideal of survivorship through a valiant “fight” or a valiant death. The reality is much more complex and nuanced.

I knew this disease well but didn’t know its newest incarnation. No one did, really. But I knew I did not want SCC.

As I lay on the table, I reminded myself that daily doses of radiation were just one part of the assault on my cancer. The course of treatment had come together quickly after the diagnosis. David Hirsch, my surgeon, looked at Diana and me. He said I had cancer but that I would be fine. We sat in his office at the university hospital.

“This cancer is not only treatable,” he said, “it’s curable.”

We would hold on to those words like a life raft as I went further and further into the treatment.

From then on it was all about percentages—75 percent chances of survival—and numbers; Stage II cancer, three lymph nodes involved, five radiation treatments a week for seven weeks, three rounds of chemo, the number of pounds I could afford to lose before I became too weak to withstand treatment. Nick had insisted that keeping myself as strong as possible would be the most important part of the support. “A patient’s prognosis isn’t determined only from his cancer staging and treatment. His Karnofsky score is the most tightly related to a good outcome.”

Now, I knew about Dr. Karnofsky, and I knew about his score. This wasn’t the only disease where your ability to tolerate the treatment was based on your ability to wash, shower, dress, and walk to the bathroom by yourself. With too much weight loss, there wouldn’t be much of you left to treat. The last thing I wanted was to become what we called a “Harvard Death”—the treatment was a success, but the patient died.

It was all numbers. No one counted the months of agony.

Cancer care is a team sport. David was directing traffic and pulled everyone together. He would email, text, and call me regularly, including office “drive-bys” and home visits. David asked Diana if she had any questions. She was scared but I knew she both liked and trusted David. That was my main concern. We were going to be in for a long and difficult haul and I would need to depend on her utterly in a few weeks for every aspect of my life. Her supports would be our team of doctors, our kids, family, and friends.

Bobby, my internist, had been a friend since second grade. We used to walk to school together. He checked in daily and called Diana regularly to clarify any questions about my progress. Nick wrote the computer program for my cancer and coordinated my visit with my new oncologist, who was a platinum specialist. Within a couple of weeks there were audiologists, dietitians, nurse practitioners, counselors, gastroenterologists, cardiologists, neurosurgeons, psychiatrists, hearing specialists, radiologists. The workup to begin the treatments was dizzying. I made lists, wrote in my journal, kept my appointments on my usual calendar jammed in between medical board meetings at the hospital, family meetings, rounds in the intensive care unit, emergency phone calls, and pushing my usual thousand and one projects forward. I had planned to work for six weeks and then take a couple of months off. By the second week of treatment, I wouldn’t be able to swallow my own spit.

I had entered a new world, the Cancer World, and it was bringing me down. The small treatment rooms in the cancer center, the artificial light, the white coats, linoleum floors, the patients in the waiting room, pastel colors, coffee pod machines with multiple flavored brews, bottles of apple juice, Internet access, the blood drawing room, old
Vogue
magazines, the plaques of donors’ names on everything, plastic wrist name bands for every visit. People who knew you looking away feigning deep thought, ostensibly respecting your privacy. Slips of paper stuck on the walls announced cancer support groups. The cushioned seats on the elevators foresaw the needs of those too weak and weary to stand. Cancer was built into the very structure of the
building, everything thoughtfully arranged and controlled by architects and decorators. It made me feel banished to a new dead place.
Life, where are you hiding?

Nick handed me off to the supervisor of the radiation treatment program.

I hung up my suit jacket, white shirt, and red silk tie and lay on the table as he approached me with a needle and some ink. The three tattoos on my chest assured perfect alignment with the radiation beam. He pressed the needle into the ink several times as a small round tattoo in the middle of my breastbone emerged.

Many years earlier I had joined a friend, the son of Auschwitz survivors, at a reunion they hosted near Nice. The survivors were flown in from around the world. Sipping drinks and overlooking the harbor full of yachts and the sparkling reflective waters of the Mediterranean, guests reached out with tattooed forearms for a drink or a canapé. Dozens of languages swirled around the flowered terrace, lit with candles, as a soft breeze lightly salted the air. My tattoo was a more subtle cancer identifier that identified me with another group of sufferers.

After placing the ink on the table, the technician turned around holding a mask with both hands. It had a metal rim the shape and size of a human head; joining the sides were black plastic strips at right angles from north to south and east to west every half inch. He fitted the mask over my head and used a screwdriver to fasten it into the table. Then with my eyes closed he brought the hair dryer over the front of the plastic latticework and heated it while pressing it with his hands into my face, so by the end of the “fitting” it was a perfect replica of me. My own personal death mask. There were rows of them on shelves in this same room with other names from Huang to Castro and now Manheimer. Lying on the table, I craved to get unbolted.

Two days later in the hospital minor surgery suite, a narcotic drip left me amnesiac while my gastroenterologist threaded his endoscope into my stomach and punched a hole anteriorly just above my belly button. A clear soft plastic tube was threaded through the new opening and secured with a small balloon. The three feet of tubing would be my lifeline for many months.

Fear stalked me when I wasn’t busy. I was worried I would never be able to work again. It would come over me sitting in my office or sitting at home with Diana and when I lay in bed with the lights out. Death would take care of itself. It always did. It was living, the idea of being sidelined on disability—that was the torment. Too weak to do anything useful but not so weak that I would leave this terrestrial existence. Caught in a limbo world. I had always been absorbed by my work. I defined myself by it and was criticized for it. It extended everywhere. My office on the mezzanine floor at Bellevue was part of a greater dynamic creative project. It led from history and fiction, to a fascination with evolution and the environment, into the backcountry of Latin America to the rhythms of international music and leisurely dinners with family and friends over bottles of wine and food expertly prepared and generously shared. If all that went away, and I was reduced to a homebody dripping cans of Ensure into a plastic umbilical cord, I would be better off dead. I didn’t have the character or the charm to write novels blinking my eyelids to an amanuensis.

The PET scan is my pre-bout preparation before I can get into the ring with cancer. I check in, and a nurse comes out to greet me. She walks me to a small workspace in a cul-de-sac where she hooks me up to an IV. I change into a gown and lock my belongings in a locker. Then she shows me into the Quiet Room. The room is small and bare except for a reclining chair and a window overlooking 34th Street and directly into the windows of the apartments across the street. There is a small radio on the wall. The room is cold, and I wrap myself in three blankets. I know I will be having a PET scan every three months for some years. It is the test to monitor cancer patients. Like a mind reader, it can see things you cannot. Cancer cells you cannot feel. Sites they may be hiding in that are invisible to other X-ray tests. The test exploits the avid metabolic appetite of cancer cells for the simple sugar glucose, their preferred meal.

When I’m in the Quiet Room, my mind wanders all over my career, my diagnosis, the treatments, my kids, my friends, trips, sex, books,
ideas, dying, and a slow death like a trickle, a drying streambed, a spent volcano, the remnants of a storm. Up until now I have had no time by myself between multitasking at Bellevue and this added measure of arranging a complex treatment regimen for myself. I arranged for other people’s treatments. Transfers, tests, best doctors to see, second opinions, faxes and emails in Spanish from Latin America and Spain for advice, treatment options, new therapies, validation, ideas, assistance, reassurance, and everything in between. Time to discuss, explain, and meet with families. I did it yesterday, the day before, and the day before that. I did it at noon, in the afternoon, during dinner, and at two a.m. I arranged for heart transplants and sensitive psychiatric evaluations. I had done this for thirty years.

The PET scan takes a long time. Lying completely still on a hard thin table, strapped in, wrapped in a sheet, and covered with a blanket. I take off my watch first; my wedding ring will not come off and I don’t want to take it off. I will be sliding in and out of a donut-shaped receiver that will measure the discharges from radioactive-tagged sugar molecules. The table is hard and my shoulder is out of position and beginning to hurt. I am tired after a long day. Has the tumor gone beyond the boundaries seen on the CT scan? That is the question. If so, then everything we have done is moot. The PET scan is the ultimate decider.

They finally unstrap me from the table, and I hang over the side light-headed from not eating. I walk back and get dressed in my suit and tie. I walk to the PET scan reading room and introduce myself to a young radiologist, the chief of nuclear medicine. I pull up a chair on wheels in the darkened room while he twirls the dials on the two large rectangular computer screens and I see my name and then my total body outline. My body is a light gray monotone, except my right neck. A confluence of black concentric overlapping circles and one deep black spot, like my inked tattoo, in my throat. There is the primary cancer and its mycelial threads into the adjacent lymphatic tissue. It is like a weather map on television with a storm center barreling up from the Caribbean. There are a few other flecks of black in my lung, but flipping up the CT scan clarifies that these are likely distant
inflammations from long ago, immune system victories. The trail has gone cold except for the tumors we identified two weeks ago. I understand what I’m seeing and call Diana.

The world did not stop when I had symptoms. It did not stop when I had my biopsy, or the tests to get ready for my arduous treatment journey.

One of my friends was languishing with a big infarct at the university hospital’s CCU. His left main coronary artery had ruptured a plaque and clotted off in the middle of the night. There was a young man who had blown an aneurysm in his cerebellum while visiting friends in Carroll Gardens in Brooklyn and been taken by ambulance to Woodhull hospital and then transferred to us; we quickly determined by physical exam and a CT scan that his brain was dead. He was the light of his parents’ life. The tangle of abnormal vessels in his right temporal lobe had leaked before and been treated with small coils of metallic tubes to clot off the malformation. It didn’t work. The family bled tears all night. I sat rubbing the mother’s back and holding her and her right hand as she sobbed her way into and through her pain. I was numb. I held her and my own tears sat in the corner of my eyes. I involuntarily touched my right neck. The node was still there.

My email box was stuffed and I was having trouble keeping up since I spent half of my time walking back and forth to 34th Street now for appointments and consultations for myself. I had pulled into myself and was less communicative, less emotionally available at work and at home. Alexei and Gladys came over often to sit with us. Gladys was eight months pregnant with our first grandchild. Alexei, a graphic artist, would draw funny cartoons to cheer us up, and they’d bring flowers to brighten our apartment. Marina would cook for us and read to me. But I wasn’t present. My withdrawal would continue involuntarily almost to a vanishing point. I dug into my work and arranging my treatments without giving much thought to the hard times to come. There was no psychological preparation possible at this point. It was happening too fast. Just as well.

And in the midst of everything, on October 13, I pressed the button marked “B” for
basement
for the first time as a cancer patient. Radiation therapy treatment centers are in basements, and everyone who works in a hospital knows what it means when they see you headed downward. There is nothing else in the basement. No patient services, no financial clearance, no psychological counseling, no library for patients, no patient advocacy offices, no administrative suites for the executives, no marketing or public relations, no conference rooms. The linear accelerators are large and weigh several tons each. The radiation therapy suites are windowless, artificially lit subterranean caverns. There are the ubiquitous plants and wood furniture to try to make it appear home-like and welcoming. The design created a camouflage of comfort, but I was not fooled.