Lessons From Living, Dying and Living Again

Splenomegoly Days

            A sultry August late night in Saratoga Springs, N.Y., in the middle of the 2009 racing season. Beneath a full moon, the downtown streets – Caroline, Putnam, Phila – were crawling with college kids and overserved railbirds pounding one last pint and hanging around for one last song. Our little group of four was escaping up Broadway in the general direction of our motel. It’d been a long day. Up at dawn after way too little sleep for an early golf starting time, 18 holes, back for a shower, a change and a long walk to the track. Then race after race, losing hard-earned money with mechanical regularity, grabbing a few beers and some fried chicken, baking in the sun in between races. Later, rum drinks at Siro’s, the trackside bar, then a downtown crawl, bouncing from place to place, nodding to the live music, girl watching, as if it was 1977 again when we, delusional as always, saw ourselves as the stars of the show.

            We’d been making this Saratoga trip for 34 years. It began as a day excursion, about a 2-hour-plus drive from our Waterbury, Connecticut, home, for three guys – old friends – then four of us. As the years went by, the trip came to include one overnight, then a two-night stay, while our numbers grew to eight, then twelve, and even fourteen at one point before coming back down to eight again. We all went back a long way. Some had even gone to grammar school and played Little League together. For years, we’d played softball and golf in summer, basketball in winter, and then retreated to friendly locals for beers and true camaraderie. But Saratoga every summer was the undisputed jewel on our social calendar.  It was much anticipated as it neared and lamented in its passing. The previous 33 trips had supplied us with innumerable memories and stories that we repeated among ourselves until they passed into legend. So when one in our group wandering up Broadway that August night in 2009 suggested a final stop at a newish place called Limoncello, who were the other three of us to say no?

            The truth was, however, that I was in quite a bit of pain and very, very tired. As we found a booth at Limoncello, I was hurting enough to be seriously alarmed by my condition. As had been the case for months, maybe even longer, the pain radiated from my lower left abdomen and up my left side to the shoulder, where it perched like a dyspeptic parrot. As types of pain went, it felt deeper and more fundamental, and had certainly lasted far longer, than a pulled muscle or a bruise. It radiated down there in my terra incognita, south of the heart and lungs, just north of the digestive tract, where the lesser known organs joined together and practiced their unknowable mumbo-jumbo. Every now and then over the months I’d wondered what the specific source might be. The kidneys? Didn’t seem likely given their location. The liver? Wrong side (although hadn’t I read about people with the liver on the left side?). The spleen? Could be, but why, and what does the spleen do anyway? The stomach? Maybe, and come to think of it I had experienced unusual feelings of fullness from time to time. The gall bladder, pancreas, duodenum? Now we were getting into the truly deep splanchnic jungle, one I felt unqualified to explore.

            But sitting there at Limoncello, weary and probably a bit withdrawn, I made the decision to at last deal seriously with the problem. The pain and fatigue, and my putting up with it, had reached a critical stage and I was not too drunk to realize it. I was 59 years old, after all. I had a family I loved – a wife of 25 years and children aged 23, 22 and 19. It was time to take these red flags seriously. Even as I downed an unnecessary Sambuca nightcap, I vowed to call the doctor as soon as I got back home.

            Steve Rubenstein was my hometown GP. I’d come to him by a circuitous route. Marcia and I had become social friends with him and his wife, June, some years earlier. He was from the same city in New Jersey – Bayonne – where my mother had grown up – practically the same block. This gave us some gritty common ground to chat and laugh about. When I finally got thoroughly fed up with my previous doc, I asked Steve if I could climb aboard his patient list. I liked his serious, low-key, common-sense approach, his experience and confidence, and the way he began many of his sentences with the phrase “In terms of,” in the manner of a beloved med school lecturer. I hadn’t been much of a believer in annual check-ups, so he probably hadn’t seen me in quite a while. Still, after only a little prodding and probing of my abdomen, he came right to the point.

            “I terms of your complaint, your spleen is enlarged,” he said. “It might be pointing to a problem in your blood. Do you know Joe Bowen? I’m going to send you over to him.”

            I didn’t know Bowen personally, but I knew who he was. He was an oncologist, a cancer guy, and not the category of specialist that you wanted popping up on your go-see list. My Limoncello concerns were escalating rapidly. I had a few questions for Dr. Rubenstein, but he danced around them. I’m sure he believed Joe Bowen could answer them more authoritatively. I probably didn’t quite believe a sore spleen could be anything too serious, at least not right away. But I couldn’t dismiss the look on my good doctor’s face. 

            Bowen’s office was located in the Harold Leever Regional Cancer Center, an up-to-date joint effort opened in 2002 by our two local hospitals, Waterbury and St. Mary’s. It was located in Waterbury, about 15 minutes from where I lived. I’d driven by it many, many times, seen it under construction in fact, but now I’d be making my first visit. It was, and is, a full-service facility, housing doctor’s offices and examination rooms, high-tech scanners and other equipment, a chemo wing, meditation room, meditation garden, and a cancer-savvy nutritionist and social worker. Of the most interest to me on my first visit, however, was the patient waiting area and the people who were waiting there. After checking in and finding a seat, I took a look around at my neighbors. Could this be my new cohort? I studied them as hard as I could without being caught out as nosy or weird. The L-shaped room was small, seating maybe 15, but it was large enough to allow me a good sampling of our illness’s impressive range. So many hard miles on their faces. Those few in wheelchairs were most prominent. They were approaching the final frontier and might, if they wanted, have terrible stories to tell the others in the room who were further back in line. The guy in the corner with the smoker’s mug tried to muffle his persistent liquid cough. Others stared vacantly or spoke quietly with the person who’d brought them in. And although the nurses who circulated in and out were friendly and even cheerful, they couldn’t do much to ease the worry and fear that hung in the room like wallpaper.

            I didn’t say anything or strike up a conversation with anyone, but I tried to silently convey that I didn’t really belong there. I was an outsider. The new kid. If all went the way I hoped, this might be my only visit. These weren’t my people, I thought. They were sick. I really wasn’t, and I wouldn’t easily be brought into their ranks. But of course I hadn’t even seen the doctor yet.

            The feeling of being examined by Joe Bowen was very different from that of being looked over by Steve Rubenstein. Both were worthy veteran doctors, but Bowen was a specialist, Rubenstein a generalist. Bowen had immersed himself in the many faces of cancer and was qualified and ready to make pronouncements that could land like hammer blows. He came into the examination room, listened to my story, asked me some questions and had me lie back on the table for a little probing and poking. Like a conjurer over a Ouija board (and like Steve Rubenstein), his fingers came to rest over my spleen – my stupid bloated spleen. He sat me up again and in an avuncular, oddly comforting Waterbury way of talking (he was a native of the city) covered all the bases, but with a notably special emphasis on a condition, a cancer of the blood, called “myelofibrosis.” It was the first time I’d ever heard the word. He said it was probably what I had, and he didn’t leave much room for doubt. He asked me if I’d had fevers, vomiting, diarrhea, bruising, rashes or night sweats. I was relieved to say that I hadn’t. In response to my questions, he said myelofibrosis had no known cause and no cure yet, but that an encouraging number of treatments were becoming available. He added that for confirmation he wanted me to come back in for a bone marrow biopsy, another first for me, and the sooner the better.

            I returned to Leever a few days later, this time feeling I had a bit more in common with the waiting-room crowd. As I waited, I wondered what the set-up for a biopsy might be. I fantasized bright operating-theater lights, a rack of IVs and a bristling medical team. Instead, I was ushered into a nondescript back room and told to remove everything but my boxers. After several minutes, Dr. Bowen came in and had me lie flat, face down, on the examination table. I think he gave me a local anesthetic in the region of my pelvis. As Bowen set to work, my general feeling was one of disappointment. Where were the movie-set color and lights? Instead, I felt that I’d been transported back to an earlier, possibly illicit, gas-lit practice of medicine, maybe in the frontier west, where a crusty old solo practitioner played by Thomas Mitchell would do the best he could with a bottle of whiskey and the few tools at his disposal.

            It would take me a long while, and several more biopsies administered by others, to appreciate how sure-handed Joe Bowen was in his technique and how good he was. He explored expertly but, I gathered, came up empty – a dry tap, as it’s known. Fibrosis had built up so much in the bone that it prevented an extraction of marrow. I wish I could have witnessed the process, but with my face down on the table, I could only go by what I could hear. It wasn’t a terrible process. I didn’t feel pain so much as that weird, uncomfortable sensation of bone – inner bone – being disturbed by a metal tool.

            He patched me up and asked me to come back a week or so later, when he confirmed his initial diagnosis. He described the things in my blood/bone/marrow that didn’t belong there, things I’d never heard of but that were without a doubt cancerous. He said there were courses of chemotherapy that could be helpful to me. He even mentioned the removal of my spleen, a splenectomy, as something to possibly consider further down the line. He wanted me to come back in three months for a blood draw. I thanked him and told him that as a matter of course I’d seek a second opinion. He said he understood.

            My next stop was Yale-New Haven Hospital, about 30 miles away in New Haven. It’s a large teaching hospital, highly respected, and affiliated with the Yale School of Medicine. But I wasn’t there to sample all of Yale’s many wonders. I was merely asking for confirmation – or not – of Joe Bowen’s verdict. I presented myself, and my data, to Dr. Peter Marks, who looked me over, did the Ouija board thing with my spleen, asked me some by-now familiar questions and then retreated for consultation with his team of oncologist/hematologists. I liked Marks, and enjoyed talking with him (he’s the same Peter Marks who more recently, as the nation’s top vaccination administrator, resigned his post after butting heads with Robert F. Kennedy, Jr.), but I wasn’t yet in the mood to seek an alliance with a particular doctor. I don’t remember if it was the same day or several days later that I sat with his team of three specialists. They felt certain that the diagnosis of myelofibrosis had been correct. They recommended I keep a close eye on blood counts, fatigue levels and any other worrisome symptoms that might appear (the forbidding “night sweats” rose once again like a vagrant moon).

            When I got back home, I understood that an initial checkpoint had been reached. With the verdict so plainly in, Marcia and I needed to spend some time going over what it was, what it meant and what we might do about it. Luckily for me, she loved nothing more than talking through a difficult personal problem, ideally over a glass of wine. Generally, I preferred she do this with one of her friends rather than with me. I was less likely by nature to open up, but in this case didn’t see how I could avoid it. So for a couple of weeks in the fall of 2009, I’d get home from my job as Editor of Connecticut Magazine and Marcia from hers as a development officer at Choate-Rosemary Hall School and we’d take stock. Our conversations took many different sidetracks and scenic routes, but they always ended up in the same place. There was no doubt that I had a serious, essentially incurable form of cancer, one I’d never heard of and didn’t know anything about. Day to day, I felt its presence, but as long as I didn’t overdo things, as I had at Saratoga, it didn’t really intrude. True, I couldn’t sleep on my right side because I felt it a little too much, but any other position was fine. In other words, in its present state, I could live with it. And Marcia could, for the time being, live with me living with it. Someone along the way, I think it was Dr. Marks, had told me the cancer could blow up and demand action in six months or in as many as ten years. I told him I’d opt for the latter.

            Yet something inside me demanded even further confirmation. I felt the need to consult a doctor, and a practice, and preferably a whole research team, that specialized in what I had. I wanted to visit a place where they talked about and thought about myelofibrosis all the time, even in the break room and on the elevator. I wanted the keenest myelo minds and the latest myelo breakthroughs. Even myelo gossip would be fine. Another thing Dr. Marks had mentioned during our consult at Yale was the name of a doctor/researcher in New York who seemed to be at or very near the head of the field. It wasn’t long before I put the words “Ronald Hoffman” into my Google search box. And it was shortly after that that I found myself driving down to Mount Sinai Hospital in Manhattan for a visit to the third floor of its Ruttenberg Treatment Center on Madison Avenue.   

            The waiting area at Ruttenberg was enormous, with seating for about 100. With its steady murmur of voices and stream of half-intelligible announcements, down-on-their-luck patrons, and names being called for blood draws and appointments, the room had something of a bus terminal vibe, only, tragically, with all the buses headed to the same destination. Just about everyone was identifiably sick, some in that late stage of uncaring, disheveled stupor, and all were clearly in need of care. They sat with their phones or laptops or a book or knitting. Others just sat. A few were in wheelchairs or even came through on gurneys. Others came with friends or family who’d be able to help them get around or take down what the doctor or nurse had to say. Every once in a while, a volunteer came around with crackers and apple juice. Even knowing what I then knew about my own condition, I remained aloof. I had trouble thinking of myself as this deathly sick or of these poor souls as my new tribe.

            If Mount Sinai was the healthcare equivalent of Yankee Stadium, with its 7,400 doctors and 42,000 employees spread out across several campuses, Dr. Hoffman was one of its most reliable all-stars. For more than 40 years he’d been helping to pioneer the fight against myeloproliferative disorders. His stated long-term goal was to “advance the cure,” identifying abnormalities in the stem cells and then finding ways to deplete or eliminate them. Progress by 2009 had come in fits and starts, stalling but not ending the takeover of the disease with various chemo pyrotechnics. Meanwhile, stem-cell replacement, also known as bone-marrow replacement, was emerging more and more as a viable alternative. It was increasingly being performed but was still too uncertain and risky to have entered the main stream of treatments.

            Certainly it was not mentioned by Ron Hoffman during our brief get-together. He saw me in his office, and I think he knew what he was going to see. He asked me the usual questions and probed the usual places. His manner was affable, open and absolutely authoritative, and he was ready to hear my questions. He even gave me his cell-phone number. But his analysis was straight to the point and nothing I hadn’t already heard. My myelo had not yet reached a critical stage and might not for some time. I would feel the effects of anemia and my enlarged spleen. I might want to play 9 holes instead  of 18. I would need to get my blood counts read regularly.

            So ended my initial run of doctors and their waiting rooms, and so began a decade of pax sanguis – of treading water, feeling not so terribly bad, and defiantly taking 10 more trips with the boys to Saratoga. I didn’t keep my condition a secret. I thought it best for people to know that something might be coming. But I really spoke about it very little. And if someone asked me about it, I’d smile and say, “It’s asleep.” But of course it wasn’t asleep. With cancer’s unerring industriousness it would remain hard at work over the course of the coming 10 years – fully occupied with the perverted, single-minded task of turning my own blood against me.