CANCER
My wife of 27 years, Annie, died suddenly in 2011; she fell at home, cause unknown, struck her head on the desk in our bedroom, and never regained consciousness. I was out in Wyoming for a speaking gig. I loved her dearly, however difficult she, an alcoholic, could be to live with. Alcoholics, I found, can be marvelously endearing and sometimes, like Annie, charismatic. On the other hand, they can often be, like Annie, crafty and secretive, hiding not only the vodka bottles in obscure spots behind books, in chandeliers, in stairwells, and on their bodies. But also hiding their very own selves. Who is this person with whom you are living? How well do you know her? I begin here because I am certain—though I have no scientific evidence—that our ongoing, deeply unsettling difficulties and her awful death, including my making the decision to pull the plug of the machines keeping her alive in hospital, led to my cancers. My immune system, I’m sure, went down, down, down.
In the summer of 2012, just months after Annie’s terrible death, I went to teach for a term at Renmin University in Beijing. I had been recruited a year before by King-Kok Cheung, who ran UCLA’s program in China and who was an old and cherished friend. She understood that I might not be up for such an adventure after Annie’s sudden passing and she offered to forgive my commitment. But I thought it might be useful to turn away from what I might have done differently to save Annie, and me, from her demons and focus on the literature and history of immigration to America. Small subject—requiring much preparation, especially since many in the class would, like the current American President, have limited English reading skills, and—what’s more--I had never taught such a class.
Renmin was itself something new in my experience. A university brochure tells us that “its campus, located on Zhongguancan, offers visitors an opportunity for a pleasant stroll away from the traffic elsewhere in the district.” That told you nothing. The campus existed behind a fence, with only a couple of entrances open. It was something of a small city, containing housing not only for students but for faculty, staff and retirees in low, tenement-like buildings, so there was a substantial mix of people by age and class. It contained a number of coffee shops and restaurants, including one with a huge illustrated menu in the hotel in which I lived. But what most enthralled me was the daily farmer’s market, where I could buy the best peaches I have ever tasted—huge, juicy, and never mealy. And a lunch counter where workers made dumplings to order—choose your own stuffings from the bowls past which you walked along the counter. A dumpling addict, I declared this a corner of heaven.
I ran pretty much every morning, despite Beijing’s notoriously bad air, on the university’s track, which at that hour was mostly used by older men walking in animated small groups. And I devoted much of my time to organizing the classes I would teach and especially preparing online slides, which were necessary for those students whose English remained sketchy. Some spoke very well, while others never ventured to talk in class. Most read adequately so long as I pointed toward the relevant directions. We discussed the quite different immigration experiences of people from Scotland, Germany, Italy, Eastern Europe’s Jewish ghettos, and, of course, China. I had them write short papers, which I read myself, and I was startled when, in one set, I discovered two that were virtually identical. My teaching assistant, a young Chinese woman--who had taken me around to her favorite Peking duck restaurant and also by bullet train to her home city, Tianjin--urged me to speak with the two students together, which we did. I explained what I had found and asked what was going on; the woman student looked baffled, but the male immediately said, “it’s me.” “How did you do this?” “Well,” he said, “you have us post our papers on line, and I saw hers and copied it.” “How could you imagine that I would not notice?” He hesitated, then explained that in most of his classes papers were read not by the professor but by one or another of a group of TA’s, and he figured it was worth the risk that different TA’s would read hers and his. The episode said a good deal to me about Chinese educational practices—both in their similarities and differences from ours. But then again, American immigration was not of central concern to students at Renmin, which had been and seemed still to be a significant Party—Communist, that is—school. I gave him a second chance based on his willingness to confess.
But I was more preoccupied with health: after two or three weeks in Renmin I had begun to itch. No rash, no visible sign of a problem, but getting progressively worse to the point, as the term drew toward an end, that I could sit in my room before my laptop only without clothing. King-Kok ultimately insisted that I visit the nearby hospital; she came with me since the doctors mostly did not speak English. My doctor, a youngish woman, was puzzled by my ailment. It was clear, she said, that whatever the problem, I’d had it before arriving in China, and she recommended, since I was leaving in a day or three, that I be tested at whatever medical facility I’d be able to get to on Hawaii’s Big Island or elsewhere. I’d been in touch with doctors back home, and their best guess was that it was some form of hepatitis. So I dutifully stopped at a clinic in Waimea, the doctor of which put me in touch with a doctor friend at my next stop, Albuquerque. No, it wasn’t hepatitis, A, B, C, or even D. Meanwhile, I had stopped taking the sulfa drug compound I’d been given by my urologist, and the itching had all but disappeared. It turned out that my liver wasn’t properly processing something called bilirubin (my enemy, Billy Rubin) and it therefore came out the pores, leaving horrible itches in its wake. I concluded that I needed a different med, if any, and even more, a different doc. Which brought me to the chair of the Weill-Cornell Urology department, Dr. Peter Schlegel.
He, my new urologist, did a cystoscopy, which turned out to be far less threatening in his hands than in previous instances, at which an unnecessary anesthesiologist had participated. Dr. Schlegel discovered that I had an aggressive form of bladder cancer. I well remember standing in his office as he told me and saying, “well, at least we know what the problem is and can address it.” Insane optimism, to go with the equally crazy pessimism that has shaded much of my life.
I was lucky. On the treatment team at Weill-Cornell/ Presbyterian was an oncologist who insisted that a small spot on my lung, which had been there in earlier scans over a couple of years, be biopsied. The biopsy revealed lung cancer, which might have been the end of the story but for her insistence. The docs at Weill-Cornell treated the bladder cancer with chemo and radiation, which they calculated would also temporarily control the lung cancer. The chemo was administered a number of times (four, I think) over a couple of hours by IV at the New York Presbyterian Cancer Center, a very busy place with a strong aroma of angst. I would hasten with others from the crowded elevator to get to check-in as quickly as seemed decent, find a couple of seats, then wait to be taken to the lab for blood work, then wait more until a cubby with a bed was available and my name, or some approximation thereof, was called. There’s a wonderful woman there who checks with patients who have been waiting for too long. Waiting, together with anxiety, is the main feature of that long, thin busy room. Eventually, I would go in, have my IV placed, and wait a bit more while the nurses carefully checked my identification against the Cisplatin and Etoposide that has been ordered up for me. Then I lay there watching the drip into my arm. Or read The Nation—since something heavier like the NY Review of Books didn’t quite meet the circumstances.
Radiation was, for me, quite different. I walked down the six blocks from my apartment every week day—until I couldn’t walk any more and Doris had to keep me upright. Two stops on the bus then made better sense. The radiation area is in the same Presbyterian hospital building but stowed away in a corner of the basement. The place was much less crowded and more strictly scheduled, since every patient has come to be treated by a giant machine. I fell in love with mine: it was so smooth and cool to the touch, devoted to its quiet task of filling the lining of my bladder with invisible rays. Always there, always ready just for me.
Then in May, after much discussion with, and among, the docs we determined that the best approach to the lung cancer, still sitting quietly in my chest, would be surgery. The process, now miniaturized, no longer requires taking what amounts to an axe to your back. Mine was not extreme: the surgeon took “just” one lobe of the lung and some nearby lymph nodes, and I went home in a day or two. In fact, Doris took me in to her house in Leonia after the op. We had earlier become an item but we had continued to sometimes use my NY apartment.
That basically was it for five years. Then a regular periodic scan showed a return of the lung cancer, stage IV. A death sentence . . . until recently. Again, I was lucky: the genetic analysis of the cancer (and anyone faced with a cancer diagnosis MUST get biomarker testing of the cancer cells) showed it was RET+, [https://www.cancer.gov/publications/dictionaries/cancer-terms/def/ret-gene] and there was in testing a drug—Blu 667—designed for targeted therapy for the RET positive genes in Non-Small-Cell Lung Cancer. [https://en.wikipedia.org/wiki/RET_proto-oncogene#:~:text=There%20are%20three%20subtypes%20based,the%20phenotype%20of%20the%20disease.] I was brought into the study, and I have been on the drug, now available for a small fortune as Gavreto, since early 2020.
It was, to say the least, a difficult time, not just for me obviously. I needed regular scans and brain MRIs, as well as blood work, and the last place I wanted to go was to a crowded hospital in New York, where the pandemic was wreaking havoc. We worked out a way to do scans, MRIs and blood work here in New Jersey. After a couple of years I returned to Presbyterian in the city, and have continued treatment there.
But that’s only the beginning. Starting some time in 2021, I began to have problems with my legs—numbness, tingling, weakness. The diagnosis was “neuropathy,” whatever that actually means. I feel like I’m wearing compression stockings even when I’m not, walking on unsteady balls, and not in control of exactly where my feet come down. It got worse. Soon, I began to need a walker, and after a year or so a wheel chair. Things came to a head when I fell in the bathroom, simply trying to stand up from the pot. Then the Englewood ER, the hospital, rehab (The Actors Fund Home, a terrific place), grab bars in the bathrooms of Doris’ house, a stair lift to get me up and down from the first floor to the second (bedrooms) floor. We gave friends and relations our Philharmonic tickets—itself a small trauma—though we held on to our new and wonderful seats for this season.
Meanwhile, I finally had a spinal MRI, and it showed serious stenosis in the Thoracic (I always call it Jurassic) area—less serious stenosis down further. Why my original neurologist hadn’t thought of doing such an MRI escapes me. Eventually, after much sturm und drang, we decided on an operation on the Thoracic area—even I could see how the stenosis had badly contorted the spinal cord. A little over a year later, I seem to have recovered from the operation—BUT I still can’t walk. I’ve learned to get around better in wheelchairs, can use the walker for exercise and to get into the downstairs bathroom, which won’t accommodate a wheelchair. But I’m in a wheelchair about 14 hours or so a day. I’ve learned like an ancient child to dress myself, and I do have an aide to help Fridays and the weekend. But I really can’t cook, though I do most of the food ordering. I hate, hate, hate being so dependent—e.g., there’s a step between the living room and dining room, which can’t easily be negotiated by the wheelchair with me in it. We recently found a collapsible small ramp, bought one, and now I can arrive at breakfast on my own. A small triumph, I’ve come to see, of disabled life.
I consulted a new neurologist, given how the first one never proposed an MRI, which might have caught the stenosis before it so badly affected the spinal cord. I needed to ask another doctor what treatment he saw as possible. He said “continuing your physical therapy. And prayer.” I said that I don’t pray. He responded: “It’s never too late.”
Meanwhile it seemed possible that the crippling neuropathy might be a side effect (nowhere that I’ve seen mentioned) of the Gavreto. Who knows? So I began contemplating, with my oncologist, coming off the med. But that led to two hard questions: will the cancer return? And if it does, will the med continue to work again? Besides that, if I came off what has been a successful med with respect to the cancer, will I improve enough to walk? I had joined a Facebook group of people with RET+ lung cancer and through a reference there had located a doctor at Memorial Sloan Kettering whose specialty was RET+ and meds like Gavreto. I wrote him a letter, sent it through the US Post Office (!), and lo and behold, in ten days I had an appointment with him and his team. I came away from that appointment feeling wonderful. It was not that they had given me a new way to combat the cancer and my crippling neuropathy. On the contrary, they were clear that my med was not at all likely the culprit causing my disability. They had years of experience with that and similar meds and had never come upon such a case. So we were back to my spinal stenoses. It was evident to me that walking again was highly unlikely. But clarity in diagnosis is, by itself, heartening. After decades of inaccurate diagnoses, as I have tried to lay out earlier, clarity—even if it meant bondage to the wheel chair—felt like air to someone submerged in anxiety.
I want to speak here to others similarly situated—not only with respect to sex, but threatening physical symptoms. You can probably find some internet entry on just about any symptom that comes across you. The problem is that the Web is a vast swamp, in which it is all too easy to get lost, to climb a convenient therapeutic tree, to dabble in the brackish waters of two-sentence medical knowledge. If we are lucky, we are taken in hand by some wonderful doctors. If not, well, the tale is never told. And, I need to add, those doctors’ nurses. In my case, it was Victoria Dai, who probably saved me more than once by instructing me “to go—immediately, now, do not pass GO—to the ER,” where they could, and did, deal with the latest calamity. I bow, seriously, in appreciation.