This is the story of the twisted road I’ve travelled over the past four years attempting to navigate through the shoals of cancer, open-heart surgery and related medical adventures, all the while (or mostly) enjoying life and the silver linings that have emerged. I decided to write this piece after a number of friends asked how I managed to remain upbeat throughout what they perceived to be my “ordeal”—in the hope that bits of my experience might be of some help to others battling cancer or some other serious illness.
My Experience In A Nutshell
In the spring of 2013, shortly after I’d turned 61, I was diagnosed with MDS—myelodysplastic syndrome—a blood cancer (alternatively referred to as a bone marrow disorder) that comes in a variety of forms with different prognoses. In my case, the nature of the disease (and the identification of a chromosomal abnormality) meant that the only potential cure was a bone marrow transplant. At the time of my diagnosis, I had no symptoms that I was aware of, and was happily living an active life, working more than 50 hours a week as a senior litigation partner at a major law firm, playing tennis once a week, fishing (not necessarily catching) on the rare occasions I could get away, and purporting to work out almost daily—relieved to have pretty much recovered my meager strength after having had three spinal surgeries during the preceding four years. Prior to those operations, I had always been remarkably healthy, subject only to occasional sports injuries.
I was diagnosed after a hematologist’s nine month evaluation ultimately led him to perform a bone marrow biopsy. Until near the end of that period, I didn’t understand what the hematologist was looking for —or trying to rule out (I naively thought hematologists dealt with blood in some vague way, not cancer), or why others around me were growing concerned as the various blood tests failed to eliminate innocuous causes. Accordingly, it came as a surprise to me, and a shock (though somewhat less of a surprise) to my wife, Melissa, when the hematologist told us I had cancer and that my life expectancy without a bone marrow transplant was unpredictable but greatly reduced. Left on its own the MDS would likely kill me in as little as two or three years. On the other hand, there was a meaningful risk that the transplant would fail and itself be fatal. Although I was later told that a number of factors, including my overall fitness, would somewhat improve my odds, the statistics first shared with me put this risk at roughly 20-30%—with the greatest risk of death in the first 90 days. And the risk of a transplant-related death would be reduced but still significant for the first 1-2 years after transplant. Accordingly, making the decision whether and when to pursue a transplant—which I knew, in the best case, would wreak havoc with my symptom-free life—was difficult. One prominent doctor advised us to wait until things got worse,
Facing the choice between these undesirable outcomes, and forced to think about the implications not just for me but also for my family, I didn’t feel despair. Melissa was living through this with me and supported me at every stage of the decision-making process. Both of us were focused on making the right decision medically while also prioritizing the needs of our two children, particularly our younger son Tommy, who was then a high school junior and still living at home.
Ultimately, we decided to look for a donor and proceed with the bone marrow transplant, primarily because we were advised that a transplant would be necessary at some point and the disease might not proceed in a gradual, predictable way. MDS might devolve into Leukemia, which would make things much worse, and even without Leukemia, I could become too sick for an effective transplant.
A first step was to select the surgeon and hospital we wanted to bet the ranch on. Even though we live in New York City, and had the good fortune to have proximity to many extraordinary doctors, we ultimately chose to put my life in the hands of Dr. Ted Alyea, an oncologist at Dana Farber in Boston.
Even before we had selected him, Dr. Alyea, had begun the process of helping us identify a suitable unrelated donor in case my sister Debbie was not a match. Finding an adequate match for a stem cell or bone marrow donation is complicated, as there are eight critical factors that must be considered. By a stroke of luck, an excellent match was found from among the 20 million generous volunteers who had signed on to the global registry as potential stem cell or bone marrow donors. Although my donor would remain anonymous for two years after the transplant(as a matter of the blood center’s protocol), we were told he was a 29 year old male, so Melissa immediately proceeded to tell people that she’d fallen in love with a 29 year old guy. Nobody could blame her.
Dr. Alyea had been recommended to us by my hematologist, who had worked closely with him in the past, and like the other two transplant specialists we consulted, he had an excellent reputation in the field. He was younger and not as well-known as the other two transplant doctors with whom we met (in New York and Seattle), but he was impressive and likeable. There were complicated differences between how the different hospitals would do the transplant—with different risks and potential benefits that I didn’t have the ability to decipher or evaluate. I didn’t attempt to do so; rather, for me the choice was based largely on personal chemistry and gut instinct and “feel.” Melissa and I both felt comfortable not only with Dr. Alyea, but with everybody we interacted with at Dana Farber—from the doctors and nurses to the receptionists and parking attendants. We were struck by the warm and surprisingly positive feel of the place and how we saw patients dealt with on each of our preliminary visits. Moreover, Dr. Alyea promised to stay with me throughout the process and to see me almost every day during what would be an extended stay in the hospital—a difference from the protocol at one of the other leading hospitals we considered—and one that was reassuring to me. I felt like he would really be my doctor, and would stick with me throughout. Finally, we also had close friends and family in the Boston area, which would not have been the case in Seattle.
The transplant was performed in Boston in September 2013. After being admitted to the hospital, and prior to the transplant, I had intensive, round the clock chemotherapy for four days. The chemo was intended to destroy my own immune system so that my body wouldn’t reject the donor’s bone marrow and would instead proceed to rely on it to generate new blood cells. I was anxious for those first days as I watched the chart on my hospital room wall, updated by my nurses daily, track the fall of my white blood cell count to almost zero, as anticipated, and then waited—hoping it would rise again if and when the donor’s bone marrow cells began to take hold. The challenge was to keep me alive during the period when I had been purposely rendered so vulnerable—akin to a newborn.
Following the transplant, which by the way, in the case of bone marrow, is not technically surgical and seems more like a high-stakes but painless blood transfusion, I remained in Brigham and Women’s hospital (which adjoins Dana Farber) for a month, in virtually complete isolation. I was confined to my hospital room and to occasional walks on a 30-yard path around the transplant patient ward, while masked and gloved. With rare exceptions, the only people I saw were Melissa (who was generally with me for a good part of every day and evening), Dr. Alyea (who was good to his word and saw me pretty much daily even when he was not my “attending physician”), and the very attentive team of nurses, nurse practitioners, and technicians who had eyes on me around the clock. Other members of my family and inner circle were more or less advised to stay away. My mother visited twice, mostly because she needed to lay eyes on me. I had little desire to see visitors, or have visitors see me.
After my release from the hospital, Melissa and I lived in a rented apartment in Boston, with virtually no visitors. The protocol devised to ensure that the apartment was more or less “sterile” prior to my arrival was elaborate. For example, all the rugs and upholstered furniture had to be steam cleaned and, based on a suggestion from one of my nurses, even the seemingly new shower heads needed to be replaced because of potential mold. Making these arrangements beforehand and then keeping things meticulously clean once I was “home” kept Melissa busy. For quite some time, I was reliant on her for everything—much more so than I had been in the hospital.
Apart from walks with Melissa in the nearby parks, I was barred from any public places—including stores, restaurants, movie theaters, trains, planes, and my own office—for 9 months, and the dietary restrictions were onerous, especially for the first 100 days. I was pretty much forbidden to eat any food that did not have preservatives. Essentially, this meant that I could eat nothing good except Entenmann’s chocolate cake, Ring Dings, and some brands of ice cream, which I consumed with abandon—as I was ordered to consume calories in order to regain some of the twelve pounds I’d lost in the hospital. So this command was among my first silver linings. Another noteworthy plus, for the first year or so, was that Melissa felt she was not allowed (or even able) to get angry with me. Given my usual transgressions and the extra demands I was making on her around the clock, this was a blessing for me and a supreme test for her. In fact, when friends asked Melissa how she was handling the long slog, she would tell them that she was looking forward to having our first post-transplant fight because it would mean that she had regained confidence that I was sticking around. Naturally, that argument has long since come and gone.
Once I passed the initial 100-day survival hurdle, I experienced an array of problems and symptoms, most associated with Graft vs. Host Disease. GvHD is basically a function of the internal battle required in order for the donor’s cells to wipe out any of my old cancerous blood cells that had survived or reemerged after the intensive pre-transplant chemo. GvHD can be chronic or acute and, in either case, it can range from a minor nuisance to fatal. In my case, it has been chronic, but not life–threatening. Thus far, my bouts of GvHD have at various times caused problems with my mouth, eyes and skin, and apparently, also my lungs. Moreover, the prednisone steroid that I’ve been required to take since the transplant—initially in high doses—severely weakened my muscles for a long time, caused or accelerated cataracts (which have since been successfully operated on), and caused permanent but thus far limited damage to my hips.
Despite the GvHD symptoms, I appeared to be making steady progress until the fall of 2014 when—almost immediately after passing the major one-year post-transplant hurdle—I began to experience severe congestion and wheezing, requiring a lung biopsy, various new medications and even higher doses of prednisone. Then, one afternoon in late January, I collapsed in our living room, thinking I had simply twisted an ankle. In fact, I had suffered from a nearly fatal pulmonary embolism.
Pulmonary emboli are often life-threatening and mine was later identified as massive—with substantial clotting in both lungs. Pulmonary emboli are often treated with medicines that break-up the clots. Although that was the initial game plan for me, within a few hours of being admitted to the hospital my condition went dramatically south, and my pulmonologist recommended that I have an emergency pulmonary embolectomy — a rare surgery, generally considered only as a matter of last resort. The operation went well, but even so, it required another hospital stay (about 10 days, mostly in the cardiac ICU) and another extended period of recovery.
During the remainder of 2015, there were other adventures, including my first ambulance ride and hospitalization for severe internal bleeding; a bout of pneumonia; and a variety of interventions involving my eyes. Even when things were going well, there were myriad transfusions and blood treatments, on top of the almost daily doctors’ appointments and tests. To a thankfully lesser extent, these appointments continue to this day. And yet, in the midst of this roller coaster ride (and apart from the PE), I have for the most part been a happy camper. Our friends and family have been tremendously supportive, and Melissa and I have found a lot to laugh about.
Until I’d been asked with some seriousness how I’d managed to remain upbeat over these past few years, and found myself at a loss for an answer, I’d never given conscious thought to how I was handling my battle with cancer. I had never looked back at my experience in the way that writing this article has forced me to do. While I’ve attempted here to note some habits and choices I’ve found helpful along the way, none of my observations are “universal truths.” Others who have navigated the process of battling cancer or other serious illnesses will have different perspectives and suggestions.
Coming to Grips With The Fact That You’ve “Got It”
Being diagnosed with cancer, at least with my condition, was a surreal experience. Because there was no pain and I felt normal and healthy, it was hard to believe I had a fatal illness—and that I was at serious risk of dying in short order.
Learning that you have cancer instantly turns your life on its head and, like looking through a kaleidoscope, immediately forces you to look at everything differently. Your illness becomes the most important thing in your life, and your usual schedule and routines go out the window as your days revolve around, and are often dominated by, medical appointments. As a result, your job and all your prior stresses quickly fade into the background.
Here is my simplest advice regarding this initial challenge: Try to spend as little time as possible wondering why this happened to you, or bemoaning the ways in which your life has been so dramatically disrupted and changed—in ways that will initially appear to be only for the worse. There’s nothing you can do about it, so the best thing you can do for yourself and those who care about you is to take your new situation on board, to the extent you can, and start moving ahead. It’s not always possible to pull this off, and there will be times you will lapse and feel sorry for yourself and/or angry, but I found looking ahead, not back, to be a productive goal to shoot for.
At least in my case, where the cancer was not diagnosed as inevitably terminal and I was spared the sometimes overwhelming challenges of physical pain, silver linings started to emerge quickly. Perhaps the first of these was that dealing with our new challenges and making critical decisions together immediately drew Melissa and me even closer together. We were on the same page about everything important, and this meant that she could take on certain burdens that would otherwise have brought me down. Among other things, Melissa immediately became the expert on all things relating to my condition. To this day, I have read virtually nothing about MDS—and avoided all the horror stories I would have found on the web, whereas Melissa absorbed as much as seemed potentially useful or unavoidable. Once I had chosen a doctor in whom I had great trust, I simply put myself in his hands and hers.
One lesson I had to learn at this stage was to be more patient. As already noted, going through this process required me to spend many hours of many days in doctors’ offices and hospitals—often waiting. Learning to handle what felt like large expanses of “wasted time” was a big adjustment for me. I quickly learned that the most tolerable and easiest way to deal with all the waiting was, again, to recognize that there was nothing I could do about it—and therefore no point in fretting. I looked for ways to make the best of the predictable delays, which in my case, has meant never going to an appointment without my Kindle. As a result, another of the silver linings of these past few years is that I’ve been able to read more since 2013 than I had in my entire adult life.
The Decision to Fight
After absorbing the news that I had a life-threatening cancer, I didn’t feel as if my life had been ruined or that I was the victim of a tragedy. Rather, I initially found myself dwelling on two conflicting lines of thought. The first was that I was fortunate to already have had such a great life: I had a wonderful wife and two terrific children; I had great friends; and I’d enjoyed a career that had been fun and interesting, and had left our family economically secure. Melissa and our sons had risen to the occasion so effectively that I was able to avoid obsessing about their own respective fears and burdens at this stage. I told myself it wouldn’t be so terrible if it all ended now—it wouldn’t be “unfair.” I didn’t talk much about dying—even with Melissa—and I didn’t perceive myself as wallowing in the fear of death. But the possibility of dying was clearly on my mind.
Most concretely, I spent a lot of time visualizing my funeral service— thinking about who would speak, and devoting considerable attention to selecting which pieces of music I wanted to have played (and which recordings of those pieces and in what order) to set the tone for what I wanted to be a warm, uplifting service. My list—which I struggled to cut down in order to avoid imposing an interminable service on my friends and family—contained some of my favorite, mostly beautiful, songs that seemed right for the event I envisioned. I sometimes cried when I visualized the service and the reactions of loved ones I knew would be there. (I’ve posted My Funeral List—and What To Do About Thunder Road—on richrothman.com.)
When I wasn’t busy planning my funeral, I pondered digging in and doing what I could to beat the cancer. Sometimes, I found myself at sea in the midst of these two very different mental outlooks. So I called a good friend who had survived a serious bout of cancer and whose judgment I’ve always admired. Once I’d explained my conflicting visions to her—my feeling, on the one hand, that I should embrace the idea that it would be fine if it all ended now, and, on the other hand, that I wanted to fight the disease—her advice was quick and unequivocal: she told me I should just forget about the first hand. And that’s what I tried to do going forward.
I also received valuable advice from someone I’d never met. An extremely busy but generous close friend of one of my partners, had gone through a bone marrow transplant decades earlier and had volunteered to talk to me. He then took a great deal of time to explain what some of the experiences and challenges would be like, and to reassure me about the prospects of enjoying my life as a survivor. He also put me in touch with one of the nation’s leading bone marrow specialists in Seattle, whom I subsequently went to meet and consult with (en route home from a “last hurrah” pre-transplant fishing trip in Alaska). I’d advise anyone considering having a transplant or facing some other serious medical procedure or challenge to speak to someone who’s been through it. Former patients won’t be hard to find, and most will be happy to give you the benefit of their experiences. (And if you’re still well enough when you’re diagnosed, and otherwise able to manage it, seize the opportunity to take a fun trip—or do something else to treat yourself—before embarking on your uncertain life as a long-term patient.
Living In The Present
Having decided to opt for the transplant, I began to live what has been one of the most helpful habits for me: for the most part, I avoided either looking back at all the things I’d “lost,” or worrying about the bad things that might happen in the future. I just did my best to live in the present, assuming things would work out—and that I wouldn’t be in the 20-30% who didn’t make it. Unless and until my doctors told me I had a new problem that we needed to address, I assumed I didn’t have one (and I trusted them to be candid, as they have been). In the meantime, I took things one step at a time, following all the medical instructions and taking advantage of the silver linings that continued to emerge.
Making The Best of Things In The Hospital
Any way you look at it, a prolonged stay in the hospital isn’t fun. As my transplant doctor had warned me before I was admitted, one of the biggest challenges I faced during my month-long stay in the transplant ward was boredom.
Certainly, there were also some physical discomforts—including the tiring effects of the intensive chemotherapy prior to the transplant (which wasn’t nearly as bad as I’d feared), and then difficulty swallowing at times, painful stinging in my eyes, general weakness, and digestive issues. Also, my sleep was sporadic—most often in one or two hour doses, at best. But what felt daunting initially—especially when I thought about how long I’d be in the hospital—was that the days seemed so long and there appeared to be so little I could do.
The most important advice I received, which transformed my hospital experience, came from one of the gifted nurses at Brigham. She suggested that I develop a routine in order to bring some structure to my days. I followed her advice, and developed a fairly fixed daily schedule for myself, which I then followed religiously. Nothing exciting—Morning: watch the news; have breakfast; do a few laps walking around the ward; shower and change into new clothes; read with music. Afternoon: lunch (usually watching the Barefoot Contessa on the Cooking Channel); nap; read; and walk again. Evening: dinner; walk; and watch TV or a movie with Melissa. I continued to follow a fairly strict, albeit modified routine after I got out of the hospital, when I was largely confined to the apartment we’d rented in Boston, and even later when I got back home to New York.
A few other habits helped me manage during my hospital stay. First, I began keeping a daily log, briefly recording how I was doing each day. During the time I was hospitalized, there were various ailments— some fairly uncomfortable and at times discouraging, particularly when it was difficult to see beyond them. So I took brief notes about my symptoms—when they surfaced, how they progressed, and when they were behind me. Later, when new problems surfaced, I was able to look back at these notes to give myself a pep talk—along the lines of “this too shall pass.”
The second habit was that I spent quite a bit of time getting to know the nurses and other members of the hospital staff with whom I came into contact. Rather than just thinking and talking about my condition all day, I asked about their families, education and training, interests and hobbies, as well as their aspirations. One terrific nurse had some delicious-sounding recipes from her Italian grandmother that we discussed in detail, including one for her Sunday Sauce—a tomato sauce with ground beef, ground pork, and sausages, among other ingredients. I wrote it down and Melissa and I later tried making it when I got out of the hospital. Another of my nurses was struggling with how to negotiate for the purchase of a house, as to which I offered some advice that hopefully didn’t lead her astray. After I was discharged from the hospital—and throughout my journey over these past few years—I’ve learned a lot by “interviewing” the doctors, nurses, medical technicians and other professionals attending to me. Here, as in other respects, my experience as a lawyer—which entailed interviewing witnesses and clients in a way that helped them feel comfortable talking openly—came in handy. Other people can make use of the different skills they’ve gained over the course of their pre-disease lives in order to ease their medical journeys.
My third hospital habit may sound silly, but it was important to me. Within days of being hospitalized, I stopped wearing the ugly and clumsy hospital gowns. Instead, Melissa brought me the same LL Bean’s flannel pajama pants, old tee shirts and flannel shirts that I live in at home—as well as a new, sterile pair of crocs. This personalized “uniform,” which she washed and refreshed each day, helped me feel more like myself and less like an invalid.
The bottom line is that while I wasn’t always successful in maintaining a positive outlook, particularly in times of greater physical discomfort, these simple habits helped me avoid spending the long days worrying and talking about my illness and the risks ahead. And beyond these habits, I received invaluable support from Melissa and others, who engaged in numerous creative ploys to enhance and normalize my experience during captivity. For example, Melissa plastered the hospital room walls with large photos of our sons and a poster-sized picture of the lake in Maine where we have a summer house. She also managed to import and hook up a good TV that we donated to the hospital after my discharge.
Taking Advantage of The Silver Linings and Restructuring Your Life
About a month after the transplant, and with my immune system still seriously compromised, I was discharged from the hospital and able to move to the apartment we’d rented in Boston. At that point, we were required to commute to Dana Farber for follow-up visits two or three times a week. We chose the apartment even though it was not close to the hospital, in no small part, because it was near the Boston Commons and Public Gardens, where I was permitted to walk. Melissa’s sister, Cynthia, who lives in Boston, made our lives infinitely easier by insisting on driving us to and from each of my follow-up hospital visits. She wore her mask when she drove us—like badge of honor.
Except for our trips to the hospital, I wasn’t allowed to go into any public places other than the Public Garden and Commons. I was required to wear a mask when I was in the elevator (or a car) and even when I was outside if there was anyone other than Melissa in shooting distance. So I was alone a great deal and had a lot of time on my hands. But additional silver linings appeared almost immediately. The first, a continuation from my stay in the hospital, was that I had infinitely more time to read good books than I’d had when I was working full time as a lawyer.
A second bright spot was that the apartment we sublet had a piano. I had taken some lessons as a kid, and had been sufficiently drawn to the idea of playing that I had bought a piano for my New York apartment when I was a young lawyer. Nevertheless, I had played it only occasionally—poorly improvising tunes that I already more or less knew. As I told my friends, I was like a lousy painter who painted every scene in the same dull shade of brown. So the piano in Boston was a stroke of good fortune and we made the decision to choose that apartment over others that might have seemed more practical. Several weeks after being discharged from the hospital, and having gained a little strength, I was lucky to find Rebecca, a terrific jazz pianist who came to the apartment and taught me wearing a mask and gloves. The lessons were great until she got sick and my doctor wouldn’t let her near me. At that point, Rebecca suggested trying to continue my lessons by Skype—something she had never attempted and that never would have occurred to me. Her ear was so good that she could instantly identify my many transgressions, and so my Skype lessons continued long after she had recovered her health and even after Melissa and I had moved back to New York. In my newfound life, I’ve had time to practice daily in a way that would have been unthinkable before my transplant. My piano lessons and practice have been highlights of the past several years, although my musical achievements are paltry—as confirmed by my recent piano “recital,” to which several unlucky friends and family members were subjected.
Beyond the piano, there were many other things Melissa did to make my quarantine in Boston tolerable, including bringing me comfortable clothes, family photos, and my favorite blanket (a ragged quilt made for her by a fellow cocktail waitress decades earlier). Virtually every day she set out to hunt for permissible foods that tasted palatable. One thing I learned is that part of staying positive is not only being good to yourself where you can, but allowing others to be good to you as well. Don’t be afraid to be “selfish.” And others will feel good about it too; Melissa says it was a comfort to her to be able to find ways to help keep my spirits up.
Despite enjoying my reading and piano, once I was out of the hospital I spent a good deal of time worrying. Absent periodic scares that I was about to have another embolism, this time fatal, I didn’t dwell on fear about my health or my chances of survival. Rather, I was most worried and confused about what I would do with my professional life once I’d emerged from the tunnel in which I found myself, as I assumed I would. Although I had enjoyed my career as a corporate litigator, the path I had taken was not the one I’d anticipated pursuing when I’d emerged from law school 36 years earlier. At that time, I believed I would start out working in a corporate law firm for a year or two and then transition to a career as a public interest lawyer in someplace far from New York City. I often told young lawyers that if someone had asked me in 1977 what the chances were that I would still be working in New York as a partner of a large law firm 30 years later, I would have told them the answer was “absolutely zero.” As it turned out, I had enjoyed my work as a corporate litigator far more than I had expected, and had found my work increasingly interesting and rewarding in the later years. Even so, I continued to have a nagging sense of regret—and guilt—that I wasn’t making the kind of contribution to the betterment of others that had always been important to me.
Well, one thing about cancer: it forced me to focus more earnestly and urgently on my “legacy”—what I wanted to accomplish—and also what I wanted to experience and enjoy—during my lifetime, which now had a much shorter horizon and could very well be several years or less. Consequently, I began to focus on how I could reshape my career once I was able to get back to working—even part time. Given what my doctors had said about the trajectory of my recovery, I knew I wouldn’t be able to return to the intense schedule I’d previously kept. And it was clear that I wouldn’t be able to resume my prior work-related travel schedule for a long time, at best.
Initially, I wasn’t ready to give up my life as a commercial litigator completely. I decided that I would continue to litigate commercial cases but spend more of the time I was able to work doing public interest work of various kinds—sometimes in a legal capacity and sometimes not. There were bumps and detours along the way. I was frustrated at times that reigniting my commercial practice wasn’t easy—clients and colleagues understandably were not calling with new cases given my condition; and, at first, some non-profit organizations didn’t welcome my offers to help as eagerly as I would have liked. I had difficulty accepting that I wasn’t going to be able to have the same kind of world-changing impact as the great public figures of our time—or even some of our own talented friends. After moping over this reality for a while, I decided that the best course for me would be to focus on helping individual people, particularly because over the years I’ve found that it’s possible to have a meaningful positive impact on another’s life with surprisingly little expenditure of time and effort.
At this point, after a few years of internal turmoil and burdening Melissa with my consternation, I’ve decided to devote all my professional time to doing pro bono legal cases and other public service work helping people in need, principally: foster care and other disadvantaged children; victims of domestic violence and human trafficking; and prisoners who should no longer be incarcerated and former prisoners attempting to make the fresh start they deserve. I’m also spending time on things I rarely had time for in my pre-cancer life—fly fishing (not catching), travelling with Melissa, continuing my slow progress on the piano, and now writing. The bottom line is that while I certainly wouldn’t have wished for cancer, I’m happy with my “new life” and don’t pine for the old one.
Be Prepared For The Roller Coaster Ride
While my transplant appears to have been a success, each time I felt that I was regaining strength and that my problems were behind me, new ones arose—such as the internal bleeding and pneumonia episodes in 2015. On occasion, Melissa and I have laughed at our ever-growing list of medical specialists, covering most of my body parts and numerous previously unheard-of conditions. For me, the best approach has been to try to take on each obstacle as it came, without looking back at how many problems I had already endured. In this regard, my experience as a lawyer litigating cases that stretched over several years may again have been helpful. There, as with my medical adventures, new unforeseen problems routinely arise that force you to adapt and deal with the changed terrain, without worrying about the past. And here, too, others can draw on their own prior life experience to adapt to, and confront, the new medical challenges they face.
Don’t think for a minute that I’ve gone through the last three years with a smile on my face. Some of the most striking aspects of this journey have been the numerous physical and emotional highs and lows—which have occasionally been extreme. Perhaps most obviously, it’s hard to remain upbeat when you’re in pain. Unlike a surreal understanding that you have a life-threatening but mostly undetectable disease, pain is very difficult and, at least for me, sometimes impossible to compartmentalize and put out of mind. In fact, the resurfacing of my back pain, probably prompted by the lowering of my prednisone dose, was (until a recent fourth spinal surgery) more often a source of anxiety and frustration for me than my cancer, which fortunately now remains largely in the background.
Another source of stress and even depression for me was my appearance. Due to the prolonged and high doses of prednisone I’d been required to take, my face and stomach had blown up dramatically and I gained 15 pounds. I loathed having to buy new clothes that I could fit into; I hated the discovery that I’d become literally unrecognizable, and had to introduce myself, to many people I had long known; and I cringed when friends sent me photos of our otherwise happy experiences together. I was reminded of my ugly appearance (never anything to write home about) every time I looked in a mirror.
Finally, while I have generally managed to avoid dwelling on my illness, there have been and continue to be times, particularly since the pulmonary embolectomy, when some relatively minor symptom or incident—such as a temporary shortness of breath—has instantly triggered intense fear, in particular of another potentially fatal embolism. These not infrequent occurrences serve as reminders that I’m not “out of the woods” and that life is fragile. On these occasions, Melissa has been a good barometer—reassuring me and/or distracting me when I’ve worried about nothing serious, and knowing when to sound the alarm with our doctors when I’ve been unable to recognize or admit that I should be worried about something truly threatening.
Getting In Shape—Do What You Can to Stay In The Game
As I’ve mentioned, I’d been very active before I became ill and, from the day of my diagnosis, I was repeatedly reassured that my fitness was a positive factor in my prognosis. Accordingly, I tried my best to stay in some semblance of physical condition almost immediately after I was admitted to the hospital. The Brigham team was good enough to install a stationary bike in my room, and a physical therapist spent some time giving me modest (indeed, feeble) exercises. The early results were pathetic. I had virtually no strength to do anything more than my 3-5 minute walks back and forth around the hospital transplant ward. The bike sat idle.
Once I was discharged from the hospital, I began doing some paltry floor exercises in the apartment, and except when the weather prohibited, I took short daily walks with Melissa—punctuated by frequent rests. Several months after the transplant, and after we’d returned to New York, I took frequent walks in Central Park with friends with whom I was allowed to visit outdoors, though still not inside. My strength picked up some, and I set up a little gym in our living room. But the progress was slow, and for every step forward a new problem surfaced that set me back. In fact, throughout this odyssey, it has been a constant battle to regain my strength, and this has resulted in frustration on which I’ve labored not to dwell.
The prednisone I was taking, while absolutely necessary, was predictably inflicting damage on my muscles (among various other body parts). In particular, it weakened my quads and other large muscles. Once I was allowed back on uncrowded subway cars, I struggled to walk up the stairs—pulling myself up by the bannister in order to do so. And even after I was able to return to the tennis court, I had no strength to run after balls and no stamina. I felt like a decrepit old man—frustrated when I watched young, strong and flexible athletes on TV, or even the slowest elderly or overweight runners whiz by me in the park.
It has only been in the past several months that I’ve felt my strength returning. I’m now able to exercise more frequently and I’ve made some (albeit unimpressive) progress on the tennis court. But I’m mindful that the road ahead is likely to have further bumps when I least expect them.
In sum, throughout the past few years since my transplant I’ve tried to just keep moving ahead to regain strength—even when the most I could do was very little and progress was elusive. There were months when exercising served only to remind me of my feebleness. And there were also times when I pushed myself too far and suffered the consequences. But that was just a necessary part of the back-and-forth process for me. In addition to physical exercise, yoga and meditation have been helpful at various points.
Visitors and Sympathy
During my hospital stays and after my release, there were numerous calls from well-wishing family members and friends asking how I was doing and wanting to visit. While this is purely a matter of personal preference, I had little desire to talk about my condition, and in my feeble state was not ready to see anybody—or to have anyone see me—outside of my immediate family and a few very close friends. Even talking to these loved ones often exhausted me. In any case, my doctor had been clear that I needed to minimize the number of people to whom I was exposed during the first several months. This meant that Melissa took responsibility not only for being my sole companion most of the time, but also for updating all of our family members and friends.
In fact, to this day, while I am repeatedly asked how I’m feeling and doing, I tend to give accurate, but very abbreviated synopses—focusing on the positives. Moreover, for whatever reason, what tended to upset me most and sometimes brought me to tears were well-intentioned expressions of love or assurances that I would survive. Accordingly, I tried to preempt such discussions, beginning all of my interchanges by asking others how they were doing, and asking questions about them. This is just one of many areas where it’s important to deal with things in whatever way works for you and, equally important, that your friends and family understand and respect your wishes.
You Need Help
I don’t know how I would have gotten through the past few years, let alone optimistically, without Melissa. While the rest of the world has mostly heard an upbeat voice, she has had to listen to my private gripes, calm or address my anxieties, and bolster me during my occasional periods of depression. On top of all this, she has been responsible for executing on my son Tommy’s oft-repeated command: “Mom, make sure you don’t let Dad do anything stupid!”
And Melissa and I relied on constant support from our siblings and close friends, who respected our need for physical and emotional space while being quietly lavish in their contributions to our own and our children’s well-being. The list is long, but to give you just two examples: Melissa’s sister Phoebe moved down from Providence to New York City, to stay with our younger son, Tommy, who was entering his senior year of high school while I was hospitalized in Boston and then while Melissa and I continued to live there for several months after my discharge. Also, what may sound like a small thing that did a lot for me: my sister sent me an old family photograph—most of which I hadn’t seen for decades—every night for the first 100 days after my transplant.
Unfortunately, not everyone will be lucky to have the supportive spouse and network of family and friends that have sustained me. But whether by reaching out and leaning on friends, family, or the support groups that exist, my advice is: Don’t be shy. Seek out logistical help and moral support wherever you can find it.
Looking back over my experience, writing this piece has caused me to articulate some things that have helped me along the way which I’d never consciously thought about before. Here are some general tips that I offer for what they’re worth:
- Try not to waste a lot of time wondering “why me?”—It is you; many others have their own problems.
- Develop a routine—especially during a protracted hospital stay—to avoid spending all your time thinking and talking about your illness.
- Learn to be patient—You’ll spend a lot of time in doctors’ offices and hospitals waiting to be poked and tested. There’s no point fretting. Find ways to enjoy the time.
- Take advantage of the silver linings— Find and enjoy all the good things you’re able do. Seize the opportunity to “redesign” your life and do new things you’ve wanted to do but never did.
- Stay in the game physically—Do as much as you can, even if that’s not very much and you feel like you’re not making progress. It will come.
- Expect that life will be bumpy and unpredictable—Just when you think you’re finally out of the woods, new problems may arise. Try to take them one at a time and go on—like jumping the waves at the beach.
- Don’t be too proud to seek help—you’ll need it.
Friends have expressed sorrow and sympathy over the “ordeal” I’ve suffered through. Although I’ve appreciated their concern and affection, I’ve been sincere when I’ve told them that I don’t view it that way; that I consider myself to be a lucky soul; and that I’m happy with my “restructured” life. And I am indeed very fortunate, for all of the reasons I’ve described, including a terrific wife, a team of brilliant, attentive doctors and nurses, loving family members and friends, and a remarkably supportive law firm. Given this extraordinary level of support and good luck, I recognize that my experience and perspective on grappling with a serious disease may not be typical. Nevertheless, I hope that bits and pieces of my story will be of some help to others as they strive to forge their own paths through cancer or some other life-altering illness—not merely to survive, but to continue enjoying the joys of being alive.
I never heard of your odyssey until I stumbled across this today on FB. By turns, this is inspiring, uplifting, poignant, cathartic,reflective, brave and ironically humorous. You are a model for others to follow. Take care and all the best for your journey forward. Russell
Thank You for sharing the many intricacies of your journey and the methods you aquired to traverse it. You are an inspiration to others “ running” this course….Many happy days forward to you, Melissa and loved ones.