Lessons from Living, Dying and Living Again

Chapter 8 (preceding chapters are posted below)

8.  Midtown Pleasance

         Great taxicab rides are not usually something one associates with a visit to Manhattan, but I’ll always remember the one I took on the first day of September, 2023. Ryan, the hospital’s social worker, had come through on his longstanding promise to secure me a room at Hope Lodge, the American Cancer Society’s temporary home for cancer patients on West 32nd Street, a half-block east of Penn Station and Madison Square Garden. September 1 was a sunny and summery Friday, and my first time out of doors since June 22. My first direct sunlight since then, too. As our cab (I was with my caretaking sister Parthy) made its way down Fifth Avenue, with resplendent Central Park to our right, I opened the window and stuck my head out like a golden retriever. The warm breeze felt good on my face and bald head. The normal markers of the big city – strollers, joggers, bikers, double parkers, honking taxi horns, food carts, delivery trucks, jaywalkers, dog walkers, pigeons – were all wonderful to me, and almost more than I could bear to take in. Even stupendously crowded, superanimated Times Square was a source of delight.

         Hope Lodge is but one of the American Cancer Society’s network of 30 such facilities nationwide. The first, in Charleston, S.C., was established in 1970. The guiding principle is simple: to provide accommodation, comfort and convenience at no cost to cancer patients (like me) who required frequent hospital visits but who lived too far away to commute. The Manhattan version is housed in a 12-story building occupied partly by regular tenants on the lower floors but also with 60 rooms for cancer patients on floors 7-12. We entered through an unassuming lobby and then up to the sixth floor, where the offices and public rooms are located. At first, they had us on the twelfth floor but with a single queen-sized bed, which wouldn’t do. They then placed us on the ninth floor with two single beds, a bathroom, a couple of chairs, a desk, dresser, closet and small-screen TV. The view from the windows was of 32nd Street, with its constant stream of vehicles and pedestrians and, across the street, an enormous hole in the ground where until recently the legendary Hotel Pennsylvania had stood. The hotel was to make way for a 61-floor office building, a plan that was soon delayed as market conditions for Manhattan office space deteriorated due to Covid. We were treated to the final stages of demolition, which sometimes began in the cool of pre-dawn and could be very loud. We often had to keep the windows closed. Quiet Sundays were delightful.

         Each floor at Hope Lodge features its own kitchen and laundry room. In the kitchen there were designated sections in the two refrigerators and cabinets for each tenant’s food and drink, along with toaster ovens, microwaves, dishwashers, dining tables, plates, bowls and utensils. The kitchen was, in its way, yet another waiting room. It was where the denizens of Floor 9 bumped into each other, chatted, and every once in a while spilled out their hopes and fears while waiting for their English muffin to toast. It was a varied crew with varying types of cancer – a woman from upstate New York with two young children at home, a woman from San Francisco who once a week prepared a lavish dinner for everyone, couples (patient and caregiver) from Connecticut, New Jersey and Florida. Some, like me, had no hair or were bent and bowed down, or depressed, or delusional. You could see that some of them would never make it back home. The consideration, decency and good cheer – the effort – everyone showed to one another would break your heart. Of course, there were those on the floor who somehow avoided detection and clearly preferred not to mingle. Did they eat in their rooms (forbidden but tolerated)? Did they dine out? Were they never hungry? Anything was possible.

         The Lodge’s sixth floor was another gathering place. The series of public spaces there included a couple of comfortable seating areas in front of large screens for TV shows or movies, a big communal kitchen used for special events (three New York Giants dropped by one day for a visit and words of encouragement, as did Martina Navratilova), a nice little library, an exercise room, and a 100-foot-long terrace overlooking 32nd Street and outfitted with comfortable seating and a profusion of plantings. Because of the tall nearby buildings, the sun never quite hit the terrace directly, but the late summer warmth and air felt good. The terrace, we soon found out, was also a home to the city’s most notorious new arrival, the Spotted Lantern Fly, described as “a plant hopper indigenous to parts of China and Vietnam.” Orders had gone out from New York agriculture officials that lantern flies were a threat to all vegetation near and far and were to be terminated with extreme prejudice on sight. So that’s what Parthy and I set out to do. It was my first attempt at freestyle exercise since leaving the hospital, and it felt good to be outdoors taking a whack or two at these surprisingly elusive pests. For her part, Parthy impressed me with the ferocity of her attack. Taken together, our tally was not large, but we felt we’d contributed to the common good.

         Every couple of days I had to travel up to Mount Sinai for doctor appointments, blood draws and transfusions. There were rumors that the hospital had a shuttle that would take us back and forth, but that proved to be a heartless fallacy. I ended up depending on Lyft instead and was envious when I saw the Sloan-Kettering shuttle pull up for its handful of pampered passengers. The expense of the Lyft rides piled up – and I was shocked at how fast the rates went up when it rained – but they proved a reliable way to get where I wanted to go. The traffic through midtown was absurd in those pre-surcharge days, especially during the week or two when the UN Security Council was in session and the 10 blocks around the UN headquarters were swarming with cops and patrol cars. I will say that from my backseat perspective the early-morning doings along Madison Avenue – its galleries, specialty shops, diners, freshly hosed sidewalks, dog walking matrons – were always interesting. Up in the 80s and 90s, I especially enjoyed observing children of privilege walking to their nearby private schools, or being walked by a parent, usually a father. I gazed at these city kids with wonder. They were already well situated on the up escalator. They were not only of the big city, with attendant street smarts, but rising above it, their expensive little backpacks spilling over with future good fortune. I quietly wished them the best and hoped that one of them might someday emerge to save us all.

In any case, none of them was headed to Mount Sinai for reviving shots of blood and platelets. The time spent there quickly became routine. A blood draw, then a half-hour wait for the results. Then an assignment to a curtained cubby and bed on the fourth floor to await the infusions. The blood procedure was relatively brief, maybe a half-hour or so, but the platelets took longer. Both came to the hospital from a mysterious storage facility somewhere out in New Jersey, and sometimes there was a long wait for them to arrive. I tried to make myself the very picture of patience, mainly to make the nurses feel more empathy for me. In truth, of course, I was in no hurry. I had nowhere to go and nothing to do. The infusions would often be the highlight of my day.

The rules at Hope Lodge stated that people with certain types of cancer or who had gone through certain procedures, such as mine, required the 24/7 presence of a caregiver while living there. I felt this was a truly imposing thing to ask of family and friends, and I think Marcia did the actual asking, but many had offered to help out in any way, and so they did. They arrived in shifts over the course of the eight weeks, some for longer periods than others: sister Parthy from Charlottesville, then Marcia, then sister Susie from Ithaca, brother Michael from Culver City, Matt, old friend Mike Meserole from Waterbury, and finally Marcia again. All humbled me with their attention and care and their genuine interest in my recovery. None of them snored. They did the laundry, went food shopping, occasionally sought out a clothing item I needed (the weather was getting chilly), and had meals with me. We watched movies and games together, sat out on the terrace, and often they read or worked quietly while I napped. Later in my stay, they accompanied me on walks around the block, shielding me from screaming or sleeping homeless people as I learned how to maneuver on my cane.

My first outing onto Manhattan’s sidewalks and streets, very early in my stay, had been an adventure, a solo one. It came during a rare small gap in my caregivers’ presence; I was alone at Hope Lodge for several hours and clearly was not to be trusted. I’d discovered that my reading glasses were missing and that I must have left them in my cab or Lyft car. I didn’t have a backup pair. I knew there had to be a shopping mall of some sort inside Penn Station, a mere half-block away, and certainly a store that would have cheap readers for sale. I gazed out my sixth-floor window and considered what I’d have to do: make it down the elevator to the ground floor, get by the front-desk man, turn left out the door and head straight for 8th Avenue, cross at the light and enter the station. The major drawback was that I hadn’t walked anywhere near that distance during my hospital stay, nor had I maneuvered through crowds of pedestrians or lanes of surging traffic. Nor did I possess anything approaching my former alertness or balance. But I needed glasses.

My outing wasn’t terrible, but it wasn’t great. I tried a jaunty greeting, even a wave of the cane, with the front-desk man, who I don’t think even looked up. My walk down the 32^nd Street sidewalk was probably not pretty. I felt out of place, like the first fish ever to try walking on land. But if you are cancer bald and somewhat emaciated and walking unsteadily on a stick, people, even in Manhattan, tend to give you a pretty wide berth. I made it to the broad avenue, crossed over and went into Penn Station. I noticed on a marquee that on that very night, September 7, The Eagles and Steely Dan would be appearing at the adjacent Madison Square Garden. Having seen Steely Dan 49 years earlier at Waterbury’s Palace Theater, I briefly wondered, ridiculously, if I might go. I wanted to see how one of my musical heroes, Donald Fagen, soul survivor and fellow Jean Shepherd-on-the-radio fan, was holding up. Certainly, he must be in better shape than I was. But there was no time to ponder. I was already losing steam. I found a Duane Reade drugstore, bought some eyeglasses and headed back out. On the way, I noticed a couple of figures on the sidewalk. They were bent over and holding awkward, arms-raised-behind-them poses while still managing to stand, reminding me of the Spirit of Ecstasy hood ornament on a Rolls Royce. Could they be street mimes, like the ones I remembered seeing in the courtyard of the Pompidou Center in Paris? I admired them very, very briefly but later found out that, no, they were fentanyl junkies experiencing the rigid throes of an overdose – just another dark sideshow in life’s endless carnival. I wobbled back to Hope Lodge and collapsed onto my bed. I secretly considered my excursion a victory, the first of its type I could claim in quite some time. And no one would ever have to know about it.

A great thing about Hope Lodge was that, along with my caregivers, friends could now come and comfortably see me – and a number of them did. Most brought delicious-looking baked goods, which I still couldn’t quite handle. All brought good vibes, lively conversation and, in some cases, news from home. Niece Kylie twice brought dinner from Amali, the wonderful Mediterranean restaurant she manages on East 60^th Street. I was happy to see everyone and grateful for the effort they’d made, and once again I tried to read how they saw me. I had lost at least 30 or 40 pounds, my sunken cheeks gave me what a sister later called “a haunted look,” and I could only compare the very sparse growth on the top of my head to Popeye’s. But people didn’t seem to mind. They didn’t stare. Their job was to make me feel better, and they did. Meanwhile, the days went by. The U.S. Tennis Open and the Ryder Cup came and went, baseball moved into playoff mode, the college and NFL football seasons began, even pro hockey and basketball started up. I had begun to think of Hope Lodge as a place everyone “hoped” to leave both standing up and before too long.

But the truth was that my blood numbers were still not improving by much, certainly not enough to allow for my release. As the calendar turned to October, Dr. Keyzner came to the conclusion (one that she’d apparently been mulling for quite a while) that I should have a “boost” for my stem cells, meaning another infusion from Matt. The problem was that my engraftment process had been generally sluggish, and it was taking too long to produce new blood cells. An additional boost might lead to improved blood cell production and a faster recovery. It was a step I hadn’t realized Matt might have to take, but he did it without hesitation, and this time I got to visit him as he lay for hours on his hospital bed, sending his cells into a little collection shag bag.

The process for me was nothing like the first time. There was no killing me first, no chemo blasts, no nightmares, no morphine, no hallucinations – just a simple transfer of the cells from Matt to the container to me. I didn’t even have to stay overnight in the hospital. And as October progressed, I thought I might be feeling a little bit better every day. Everyone began to understand that, at this point, a sort of uneven recovery had arrived, and I’d be better off at home, or at least no great harm would come from my being there. My blood counts were by now moderately, rather than gravely, poor. My recollection is that my platelets were around 60 and trending slightly upward (again, normal would be 150-450). Hemoglobin was rather low but white blood was near normal. If it came to getting blood draws and occasional transfusions, I could do that at home, at Leever Cancer Center or St. Mary’s. If it came to napping for hours, I could do that at home. If it came to not eating, I could do that at home. If it came to losing my cellphone or balancing backward against a wall in order to put my pants on, I could certainly do that at home. I felt ready for the challenge, to see what was going to happen. With the boost, Mount Sinai had really done all it could do for me. Doctor Keyzner and I spoke, along with Marcia. The good doctor agreed. She thought that with a local oncologist watching over me and communicating with her, and a schedule for in-person follow-ups, it was finally time to get back to Connecticut. We set the date for October 31, 2023.

Lessons from Living, Dying and Living Again

Chapter 7 (preceding chapters are posted below)

The Half-Dream Room

         “A heavy blow takes you to the door of this room. It opens, and you see neon, orange and green lights blinking. You see bats blowing trumpets, alligators playing trombones, and snakes are screaming.”

                                                                                          – Muhammad Ali

         It is here that I begin to lose track of things. I do know that I was in the hospital for exactly 70 days. I remember that at first the days of heavy dosing with three different types of chemo went easily and well. Even as the poisons were wiping out millions of my blood cells, cleansing me and, like obliging angels, bringing me right out to the edge, I began to think that maybe this whole procedure – killing me first – might not be so agonizing after all. Maybe I’d somehow be able to defy the odds, nimbly skip the hard parts without much trouble and live happily ever after. Then Dr. Keyzner, in one of her prep talks, told me to please beware. These few days might be fine, she advised, and the day of rest, too, and even the first day or two following the transplant. But then, she indicated, it would be game on, the honeymoon would be over, and I’d know I was engaged in a battle royale. Maybe she was right, but these early days did go by smoothly. I ate well. I had visitors. I familiarized myself with my surroundings. I tried to figure out how the TV worked and why the hospital wi-fi seemed to disconnect after 30 seconds of disuse. I went through whatever preliminaries the staff set before me. I began to chit-chat with some of the nurses and orderlies. I wanted to make friends for the rough days ahead.

         The actual transplantation of Matt’s stem cells into my bloodstream on June 27 was so low-key that I don’t remember it at all. I’d earlier had a port installed in the upper left side of my chest by a madcap doc whose good humor I found infectious. After a few moments of probing, he showed me a tiny red plastic heart. “I found it!” he exclaimed, laughing, holding it between his thumb and index finger. “Oooookay,” I thought to myself. “I’m in the funhouse now.” But the transfer of cells through that port a couple of days later occurred without humor, as I recall, and seemed terribly anticlimactic following all the months and even years of build-up. I returned to my room to await the eventual graft versus host showdown – the invariably awkward introduction of Matt’s cells into my environment. Would everyone get along or would there be trouble? It was far from unheard of for the process to turn fatal right out of the gate. And then there were the large amounts of chemo introduced into my system, three kinds, each with its own set of house-of-horrors side effects. When would that truly begin to kick in?

         Soon, as it turned out. After a couple of days, a rough sort of disorientation began to set in, and then all of a sudden it overwhelmed me. I lost my grip on where I was and what was going on. I lost my sense of time and even whether it was day or night outside. For a while – days – I went very deeply into places I’d never been before. My nightmares were astonishingly vivid. In the one that I remember most clearly, I was on one of the top floors of the World Trade Center when the planes hit. It soon became clear that I’d have to jump in order to have control over my own way of dying. I jumped and dropped through a ring of smoke and flame. I reached out and scraped my fingers along the side of the building as I plummeted down. I hit the ground and then there was nothing but blackness and silence. Meanwhile, I was in actual pain, too, although I don’t remember where or what kind of pain it was. It must have been bad though. They gave me a morphine button, and every once in a while I was able to treat myself to a hit. As the drug entered my system, I felt a reassuring pressure, like the pressing of a thumb, above my right eye on my forehead. I took all the morphine I could.

         I experienced hallucinations that could take me out of my hospital bed and put me in better, or at least different, places. My favorite was a spot alongside a lazily winding Southern river, with Spanish moss hanging overhead. It was a serene setting with filtered sunlight and the sound of water running across stones. I went there more than once. One time, I saw some people off in the distance on the opposite riverbank and then realized they were one of my doctors and his associates stopping by for a visit. Another hallucination took me to the tap room of a New England country inn, where I sat quietly and watched as people – vacationers, it appeared – came and went, some carrying skis, and a nice fire crackled in the hearth. My last escape was an especially weird one, a two-story brick building located in Wallingford, Connecticut, seemingly a rehab facility of some sort. I was aware that to the rear of the building was a large swimming pool designed to look like a Roman bath. I was on the building’s front lawn one night when I was overcome with an explosive surge of diarrhea. I was helpless to stop it or control it, but luckily two nurses came out (had they been watching me from a rehab window?) and got me fixed up again – although one of them kept saying, “Bad boy, bad boy.”

         Non-hallucinations could be no less extraordinary. Most notable of all was the night when I sat on the edge of my hospital bed and it gradually dawned on me that my hair was falling out. I slouched dejectedly in the room’s half-light and methodically began pulling out sad little clumps, letting them flutter to the floor. When the morning came, my full head of gray and black hair, always haylike and difficult, had been replaced by no hair at all. My eyes kept playing tricks on me, too. I could close them and see kaleidoscopic patterns in various colors and configurations, and if I shut them tight I could achieve total blackness even in the middle of the day. My favorite pattern, which continued on and off for quite a while, was a checkerboard of tiny black and green squares.

         Meanwhile, the chemo kickbacks were easy to spot. The predicted mouth sores brought an elemental, even Old Testament, misery. The pain was difficult to manage. I couldn’t chew or swallow. I had to ask the nurses to chop up some of my larger pills and mix them with applesauce so that I might be able to slip it all down my throat like the way you fool a dog into taking distemper pills. As for food, I’d completely lost my appetite. Nothing was appealing and wouldn’t be for months. I tried to think of things I might be able to tolerate – an orange, some yogurt, a Hostess fruit pie – but all proved to be more than I could do. All liquids, even water, were unappealing, too. I was perfectly happy to let my feeding and hydrating IV tubes do the heavy lifting for the time being.

         I scraped bottom for about 10 days. This is when people thought I might not make it. I lay in bed and slept a lot. Marcia and the kids came to visit, but I was barely aware of their presence or would simply nod off in the middle of a conversation. Or maybe I’d pull out my plastic container and take an ill-concealed leak while they were talking. One visitor I remember was the staff person who came by to give me a cognitive test as a way to measure my recovery and where my brain stood. It was the same sort of test Donald Trump claimed to have “aced” by successfully regurgitating the words “Person. Woman. Man. Camera. TV.” in proper order. I wasn’t so successful, at least the first time I was tested. She asked me who was President and I couldn’t remember Joe Biden’s name. She asked me what day it was, a standard question, and I couldn’t tell her it was July 4th. She asked me to spell “world,” which I did, and then she asked me to spell it backwards, which I simply could not do despite a number of tries. The woman told me not to worry, that my answers would improve over time, but of course I did worry. And when I finally remembered the President’s name a little while later, like a candidate-besotted campaign worker I shouted “Joe Biden!” into my empty room.

         Nurses and other staff broke through the hospital fog with regularity. There were so many different nurses, and personalities and levels of competence (most were highly competent) that it was hard for me to establish favorites. I did think that one nurse with black-framed glasses was wonderfully adept, sharp and friendly, but she soon moved off to other things and I never even caught her name. I missed her when she was gone, like someone you fall in love with on a train, but it’s probably not a great idea to try to establish friendships in the stem-cell replacement ward. There was an African orderly named Joseph who impressed me with his air of peace and serenity. Never have I seen anyone change the sheets on a bed with such methodical purpose and perfection. I was heartened to see him at work. The others did what they had to do, usually with good cheer. They brought me my pills, adjusted my bedding, helped me to the toilet, kept my array of IV units in order, took my vitals (blood pressure, temp, oxygen level) with exhausting frequency, brought my meals (which I never ate) and kept my pitcher of ice water fresh (but not tempting). There were also those who drew my blood multiple times every day. They stuck a needle in my arm, or wrist, or even my hand as my veins, as with an old tin mine, became thin, dusty and unproductive. Getting the first blood draw of the day turned out to be my daily wake-up call. Someone would come in around 5 a.m. to stab me and draw out one or more vials of fluid. The doctors would want to see my new numbers first thing when they came in to work. At one point along the way, my veins became so depleted that they brought in a specialist, a sort of “vein whisperer,” to find and open up a new line. As he worked (successfully, as it turned out), I thought he carried himself with the stealth and quiet self-importance of a safecracker.

         Doctors came by several times a day. Doctor Keyzner was not among those making the rounds at the hospital while I was there, although she did drop by from time to time. The doctors I saw all had bone marrow transplantation as one of their specialties. Their bedside manners varied greatly, running from gruff to harried to nicely engaged and informative. One seersucker-clad older doc and I, and my brother Michael, who was visiting from California, had a quite detailed chat about root beer. Another, whom I saw a number of times, was John Levine. He was full of good energy and gave me just the sort of attention I needed. He usually arrived with a coterie of younger associates, I guess med school students, so I tried to play to the crowd as I described my latest woes and symptoms. But the one I will remember most fondly was Aaron Etra. Each morning, after my 5 o’clock jab, I’d lie in sort of a suspended twilit state, unable to go back to sleep, and then, after a while, I’d be aware that someone was standing at the foot of the bed – Doctor Etra, coming to say good morning and see how the night had gone. He was always a welcome sight, even when I didn’t feel well. He struck me as calm and meticulous in word and deed. He was also very low-key funny. Those in my family who spoke with him found him to be extraordinarily well-informed and helpful. He always had my blood numbers at the ready if I wanted to hear them and answers to my many questions. He was concerned with my lack of appetite. “If I bring you a Hershey Bar will you eat it,” he asked. “Yes,” I lied. He brought it and I couldn’t eat it. I couldn’t even look at the package. After maybe a few weeks, he drifted off to another assignment and I don’t think I saw him again. Another train-ride fling.

         I stayed in my little room all of July and August. I was in Manhattan but it could have been Manhattan, Kansas, for all I knew or cared. My view out my window was unchanging: people walking back and forth in the corridor across the atrium, sometimes with a sense of purpose, sometimes not, sometimes with a cup of coffee in hand, sometimes not. Their endless, silent milling reminded me of figures in a Fellini movie or the milling pedestrian crowds in Rome at dusk. I was reduced to watching Yankees games on TV. I had no energy for reading, and often little interest in talking or even scrolling on my phone, which always seemed just out of reach or needing a charge. I could sit up in bed and even rise and get to the bathroom with the help of a walker, dragging my IV array behind me. It was a tedious process, first to ring for help, and then for help to arrive, and then for me to stand, untangle my attachments and get moving. I didn’t always make it in time, especially in the early days. But things got better as I regained some control over my various interior systems.

         Marcia called every morning at around 7:30 to get my blood numbers and see how I was doing. She was gradually getting used to being alone in the house and taking care of things I normally would do. One morning she woke up to water in the basement and learned that the hot-water tank had burst. She managed the purchase and installation of a deluxe new tank. Very deluxe. She also had a stand-off with our duplex neighbors, with whom we shared an outdoor deck space separated by a wooden divider. They were redoing their side and, as I understood it, proposed a change in the configuration in which they’d gain some of our existing space. Marcia did not let that happen. She described the situation to me over the phone but I was in no shape to get involved. Overall, I think she enjoyed and was proud of how she’d handled her trial run of widowhood. She was comfortable with her single status, felt secure in our house, counted on her large and loyal group of female friends for support (as she’d provided them on many occasions), and could dine happily and guiltlessly on broccoli cooked, broccoli raw, her own home-baked cookies and an occasional piece of salmon.

         She also came to visit me, as did John, Matt and Claire. Their presence always lifted me out of my semi-conscious state. John brought news of their new addition, Charlie, who’d been born in May, not long before I’d gone into the hospital. I’d visited him briefly at the time, thoroughly approved of his name and now was happy to hear that all was well with him and that his 3-year-old older sister was treating him with love and care and only an occasional too hardish squeeze. Claire brought photos of James, who was developing a passion for trucks. She also broke the huge news that she was expecting child number two, due in April. Things move fast if you turn your head for just a second. Matt no doubt wanted to take a close look at me to make sure his stem cells were still on the job.

         Also arriving on the scene was my dear brother Michael, flying in from Culver City to enter my room with suitcase in hand and his guitar on his back. He’d be able to stay at his daughter Kylie’s place in the city and spend lots of time with me. Michael is 18 months younger than I, open-handed and outgoing, a lifelong fellow traveler and a talented singer, musician and songwriter. We had so much we could talk about and, even with me in a woozy state, laugh about. I still wasn’t eating or drinking anything and we thought that ice-cold soda might be the answer. He scoured the neighborhood and came back with some premier bottles – Boylan’s root beer and orange soda, Stewart’s birch beer. But when the time came, I still couldn’t face drinking them. I did like the idea of drinking them though. We talked a lot about music, too, as we always have. I revealed to him that should I require a memorial service anytime soon, I’d love it if he could close out the ceremony by singing the old Kinks song “Days,” with whatever audience participation he could muster. He wanted me to compile a list of my favorite 20 songs, but my handwriting was so weak and shaky I finally gave up writing the names down. Sandy Denny’s “Who Knows Where the Time Goes?,” Paul Simon’s “The Only Living Boy in New York,” the Rolling Stones’ “Paint It Black,” Tracy Chapman’s “Fast Car” and Procol Harum’s “Whiter Shade of Pale” were among the many songs, none of them remotely recent, that we discussed, or played, or sang. Of course, I was apt to nod off in the middle of an incisive critique, but I think he nodded off a few times himself.

         All the while, my main objective was to get my blood counts back into a normal, or normal enough, range. I wouldn’t be discharged until that happened. The normal range for platelets, for instance, is 150-450. Post procedure, mine were at 6, and it was a battle to get them above 10 and then 20. From the very beginning, Dr. Keyzner and the others had advised patience above all else, and we tried our best. But it wasn’t always easy, or even possible. My red cells and hemoglobin were also lagging. To stabilize them, I needed many blood and platelets transfusions. I will always be grateful to those, unknown to me, who donated and helped keep me alive. 

         Eventually, very gradually, my numbers began to improve, and it came time to leave my hospital bed. When the day arrived at last, I was happy to put on street clothes and actual shoes. To help me move about I had a borrowed cane and a walker the hospital kind of forced on me, and which I never used. (It remains in pristine, unopened condition in our basement at home.) I thought I might be able to use a wonderful old cane my father had held onto from his days in Sphinx, a “secret society” at Dartmouth, circa 1933. But I needed more than a decorative old stick for support. Just before I left, the discharge nurse came in with her list of do’s and don’ts and a shopping bag full of drugs and related paraphernalia. I wished there’d been a chance to properly thank and say goodbye to everyone who’d hung with me for 10 weeks. It was hard for me to square what had meant so much – everything – to me, the annihilation of my deadly diseases, with what was mere routine for them. I still had a great deal of recovering to do – my stamina and balance were poor, my appetite was nonexistent, my pallor was notable, my head was hairless, my hiccups persisted. But I was delighted to be wheeled out Mount Sinai’s front door and into the open air.

Lessons From Living, Dying and Living Again

Chapter 6 (preceding chapters are posted below)

Elevator Bldg., Park Vu

In October 1958, at the Boris Kidrich Institute in Vinca, Yugoslavia, there was an accident involving a nuclear reactor. The reactor, in use for research purposes, malfunctioned and released radiation into the lab’s interior spaces. Six workers received potentially lethal doses. All developed severe radiation sickness and one of them died right away. The other five unwittingly took part in a medical marvel. They received experimental allogeneic bone marrow transplants, the first ever in humans. The transplants eventually were rejected by all the patients, so little was known about blood and cell compatibility. But it was thought that before rejection the infusion of donor marrow probably contributed to the men’s initial survival.

         Rushing to the scene to conduct the transplants had been a French oncologist named Georges Mathe. He and others had been working on transplants, usually with mice, for some time, with promising results. But they’d been reluctant to try it on human beings. Now, with Mathe’s relentless pushing, they’d just gone ahead and done it. In certain, major ways the work had been successful, but it still seemed like an experiment. It had a back-to-the-drawing board feel to it. Doctor Mathe did go back to work, almost obsessively, and in 1963 he shocked the medical establishment again by announcing he’d cured a patient of leukemia via a bone marrow transplant. Again, the patient didn’t survive for long, but it wasn’t the leukemia that killed him, it again was complications from the procedure. After that, work on thousands of refinements started up around the world, but Dr. Mathe had set the bar. “It was quite a leap of scientific genius,” said Dr. Joseph H. Antin, chief of stem-cell transplantation at Boston’s Dana-Farber Cancer Institute. “He’s one of the original innovators. Much of what we’ve accomplished can be linked back in a fairly direct way to the work he did in the 1950s and ‘60s.”

         At around the time of Dr. Mathe’s leukemia announcement, a couple of Canadian researchers, Drs. James Till and Ernest McCulloch, stumbled upon a discovery that would soon make all the difference in the transplant world. While delving into the many mysteries of bone marrow they’d turned up a cache of something they hadn’t noticed before: self-renewing cells – stem cells, as they’d eventually be called. Further, they discovered that these cells had the ability not only to grow, but to take on the characteristics of whatever type of blood cells the body needed – white (help the body fight infection), red (carry oxygen through the body) or platelets (help blood clot and prevent bleeding). Researchers realized that if they could inject the cells into a failing vessel, they might propagate and bring new life and strength, and not just for cancer patients but possibly for other illnesses as well. Now other labs around the world joined in the effort. One major finding came early on. It became clear that, once they were injected, the new stem cells often went fatally to war with whatever host cells they encountered. Researchers realized that in order for the new cells to have a chance do their job, the old cells would first have to be removed. The good news was that advances in chemotherapy and radiation were making that increasingly possible. In my case, several days of intense chemo would wipe out both my cancerous and noncancerous cells (kill me) and then an injection of Matt’s healthy, younger cells would bring me back to life.

         As to Matt’s role, other advances over the years had made the donor’s job reasonably simple and painless. Instead of undergoing the arduous physical removal of marrow from his hip bone, he’d lie on a hospital bed as a catheter in one arm removed blood, sent it to a machine that extracted the stem cells (I always picture a coffee filter doing the separating), and then returned it via a feed to his other arm. It would take four or five hours to collect enough stem cells. They’d be bagged, tagged and, in a day or two, injected into my own bloodstream, where they’d migrate to my marrow and replace the cells that had been burned away by chemo. At least that was the plan. Lots of problems might pop up, especially among the millions of adjustments following the procedure, but the road into Mount Sinai’s operating theater had become clear, straight and well-lit. No turning back. June 27 was the day.

         Following Connecticut’s long winters and stubborn springs, June can sometimes seem like it will never arrive. But in 2023 it arrived way too soon for my taste. It came in at a gallop. I by now had little to do but wait as the days tumbled forward. My continuing neutropenic state kept me from any “Connecticut Icons” speaking engagements. I’d withdrawn from my golf league, leaving my partner with the task of finding a new mate. I couldn’t summon the focus or the creative energy to work on any writing projects. My calendar showed nothing other than doctor appointments and a few birthdays and anniversaries. Doctor Keyzner had not seemed terribly fazed by my stay in St. Mary’s. There’d been no lingering effects or notable weakening in my systems. Just to be sure, she put me through all the preliminaries: EKG, echocardiogram, CT scan, liver and kidney exams, a pulmonary function test, an assessment of my veins, and blood draws of every stripe. All was “go,” as they used to say leading up to NASA space launches. I was ready to get locked into the capsule.

         We didn’t have any kind of send-off. We didn’t really have too much of an idea of how long I’d be gone. I’d always been in charge of paying the bills and minding our family financials, but by now most of the major bills were taken care of with auto-pay and our financials were in the capable hands of Marcia’s brother, Dave, a longtime broker and financial advisor. Even so, I went over everything with Marcia and John, warned them we’d soon be getting our property tax bill in the mail, and asked that my car be taken out for a run every now and then. There was also the question of our July beach rental in Rhode Island. As I indicated earlier, Quonnie had for years been a place of peace and relaxation for all, but especially for our children. They’d enjoyed its sea breezes, sandy bike paths, crabbing expeditions and weekend morning softball games for as long as they could remember. Even now, they liked to entertain each other with tales from Quonnie’s timeless summer story and their own indelible places in it. We months earlier had reserved our place for four weeks, beginning the last Saturday in June. Soon after, I realized I wouldn’t be able to do it and then I learned that no one else in the family wanted to, either, if I was going to be in a hospital room somewhere. At first we thought the last two weeks of July might be a possibility but then decided the last two weeks of September could work. Luckily, we’d rented the same place for several summers in a row and had built a relationship of sorts with the owners. They hung with us through all our changes, as did the rental agent, and for that we will always be grateful. My own take was that if I could get to the beach, by medivac if necessary, even for a single day, I’d be delighted. But delight would not be on the menu that summer.

         Marcia and I went down to Manhattan a day early and stayed overnight in our friends’ unoccupied apartment just off Madison Avenue on East 67th Street. We strolled over to an Italian restaurant on Lex, where we dined in one of those ubiquitous sidewalk enclosures. Dining at the table next to ours was a person in a full Spiderman costume who, as far as I could tell, never went out of character. We tried not to be solemn about the occasion, but the “last meal” or at least “last good meal” aspect was hard to avoid. The plan was to go up to Mount Sinai the next day for admission and a battery of meetings with the admitting nurse, the social worker, the physical therapy worker, the drug person, and so forth, all of which we did. At some point, Marcia left for home and I changed into my hospital gown. Also at some point, when I was out of my room, someone entered and lifted my pair of AirPods, brand new and never worn, a “going away” gift from a dear friend that I was stupid enough to leave on the bedside table. Not a great start to my visit, although it taught a valuable lesson about pocketable valuables in a place where many different people entered and exited many times a day. I think we did manage to trace them to New Brunswick, N.J., but that’s where the trail went cold.

         I don’t know if I ever learned what floor I was on, but it was another Neutropenia Suite for one, with bathroom, TV, comfortable chair and even a view of a sliver of Central Park, shockingly green and inviting against the neutral colors of the hospital exteriors. It was even possible to see the softball diamonds where Matt played some of his city games. The building was the Guggenheim Pavilion, designed by I.M. Pei and opened in 1992. The New York Times had greeted the new building with lavish praise (I did notice the name of Times publisher A. O. Sulzberger on the hospital’s roster of board members). “I.M. Pei continues his quest for a clean, well-lighted place,” the Times’ report began. “This time, the search has turned up a couple of beauties: a pair of lofty atriums, luminous with natural light. Rising 6 and 11 stories, respectively, these radiant, three-sided rooms offer Mount Sinai’s patients one of the world’s oldest holistic therapies: architecture.” But wait, there’s more: “Mr. Pei has created a modern building that looks nothing like a hospital, even though it is one. It resembles, rather, a health spa, a tranquil oasis where trees grow and space soars amid urban bustle and big-city hospital commotion. [It’s] a building of uncommon clarity in more than one sense: lucid in organization, lustrous in space.” Well then. Would it be churlish of me to say that the brilliance of the triangles never occurred to me, nor did I ever say to myself, “Hey, wait a minute, am I in a hospital or a health spa?” I saw it instead as a handsomely designed hospital, on the new side, well equipped, with public spaces I was unfortunately never able to visit. I guess the gulf between a patient’s view and that of a newspaper’s architecture critic can be wide.  

         One thing I did notice and come to greatly appreciate during my long term at Mount Sinai was the roster of names displayed on the walls of the hospital’s many buildings and halls – Guggenheim, Hess, Icahn, Klingerstein, Kravis, Rubin, Annenberg and all the rest. Were they robber barons and thieves? I don’t know, maybe, but they’d been big givers in a world where big giving was needed. Of course there’d been thousands of little givers, too, and all could be rightfully proud of what they’d helped create. But the big guys, the pharaohs, kept Mount Sinai at the head of the class when that meant raising $500 million for a building project. The longer I stayed, the more I was thankful for their largesse.

         As that first night fell, I had no choice but to contemplate what lay ahead. All else, all those months and years, had been mere prologue. The moment had finally arrived. I would undergo three days of powerful chemo infusions, have a day of rest, and then receive my new stem cells. At some point during this period, Matt would be in a bed in another part of the hospital having his cells extracted. I’d had a chance to speak with him a few days earlier. He of course feared that his cells would not be enough to do the job and somehow would lead to my demise. He wondered if he was really the right one for the job. I begged him not to worry, and that if anything went wrong it was the fault of the patient (me) and not him. “If the procedure is a success, you’re a hero,” I said to him. “And if it’s not a success, you’re still a hero.” I thought of that conversation as I drifted off in my narrow hospital bed that night of June 22, the first of 100 straight nights of sleeping flat on my back.