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.