Cancer Stories: The Art of Oncology

Listen to ASCO's Journal of Clinical Oncology Art of Oncology article, "A Whipple of Choice" by Dr. Carl Forsberg, who is an Assistant Professor of Strategy and History at Air Force War College. The article is followed by an interview with Forsberg and host Dr. Mikkael Sekeres. Dr Forsberg shares his experience with an uncommon cancer treated by a new therapy for which no directly relevant data were available. Transcript Narrator: A Whipple of Choice, by C. W. Forsberg, PDH I sat across from a hepatobiliary surgeon on a gray October afternoon. "To be frank," he told me, "we don't know what to recommend in your case. So we default to being conservative. That means a Whipple surgery, even though there are no data showing it will improve your outcome." The assessment surprised me, diverging from my expectation that doctors provide clear recommendations. Yet the surgeon's willingness to structure our conversation around the ambiguity of the case was immensely clarifying. With a few words he cut through the frustrations that had characterized previous discussions with other physicians. I grasped that with an uncommon cancer treated by a novel therapy with no directly relevant data, I faced a radical choice. My situation that afternoon was worlds away from where I was 5 months earlier, when I was diagnosed with presumed pancreatic cancer at the age of 35. An early scan was suspicious for peritoneal metastasis. The implications seemed obvious. I prepared myself for the inevitable, facing my fate stoically except in those moments when I lingered next to my young son and daughter as they drifted to sleep. Contemplating my death when they were still so vulnerable, I wept. Then the specter of death retreated. Further tests revealed no metastasis. New doctors believed the tumor was duodenal and not pancreatic. More importantly, the tumor tested as deficient mismatch repair (dMMR), predictable in a Lynch syndrome carrier like me. In the 7 years since I was treated for an earlier colon cancer, immune checkpoint inhibitor (ICI) immunotherapy had revolutionized treatment of dMMR and high microsatellite instability tumors. One oncologist walked me through a series of recent studies that showed extraordinary responses to ICI therapy in locally advanced colon and rectal tumors with these biomarkers.1-4 He expressed optimism that my cancer could have a similar response. I embarked on a 24-week course of nivolumab and ipilimumab. After 6 weeks of therapy, a computed tomography (CT) scan showed a significant reduction in tumor size. My health rebounded as the tumor receded. This miraculous escape, however, was bound by the specter of a Whipple surgery, vaguely promised 6 months into my treatment. At the internationally renowned center where I was diagnosed and began treatment with astonishing efficiency, neither oncologists nor surgeons entertained the possibility of a surgery-sparing approach. "In a young, healthy patient like you we would absolutely recommend a Whipple," my first oncologist told me. A second oncologist repeated that assessment. When asked if immunotherapy could provide a definitive cure, he replied that "if the tumor disappeared we could have that conversation." My charismatic surgeon exuded confidence that I would sail through the procedure: "You are in excellent health and fitness—it will be a delicious surgery for me." Momentum carried me forward in the belief that surgery was out of my hands. Four months into treatment, I was jolted into the realization that a Whipple was a choice. I transferred my infusions to a cancer center nearer my home, where I saw a third oncologist, who was nearly my age. On a sunny afternoon, 2 months into our relationship, he suggested I think about a watch-and-wait approach that continued ICI therapy with the aim of avoiding surgery. "Is that an option?" I asked, taken aback. "This is a life-changing surgery," he responded. "You should consider it." He arranged a meeting for me with his colleague, the hepatobiliary surgeon who clarified that "there are no data showing that surgery will improve your outcome." How should patients and physicians make decisions in the absence of data? My previous experience with cancer offered little help. When I was diagnosed with colon cancer at the age of 28, doctors made clear recommendations based on clear evidence. I marched through surgery and never second-guessed my choices. A watch-and-wait approach made sense to me based on theory and extrapolation. Could duodenal tumors treated by ICIs behave that differently from colorectal cancers, for which data existed to make a watch-and-wait approach appear reasonable? The hepatobiliary surgeon at the regional cancer center told me, "I could make a theoretical argument either way and leave you walking out of here convinced. But we simply don't know." His comment reflects modern medicine's strict empiricism, but it foreclosed further discussion of the scientific questions involved and pushed the decision into the realm of personal values. Facing this dilemma, my family situation drove me toward surgery despite my intuition that immunotherapy could provide a definitive cure. The night before I scheduled my Whipple procedure, I wrote in my journal that "in the face of radical uncertainty one must resort to basic values—and my priority is to survive for my children. A maimed, weakened father is without doubt better than no father at all." To be sure, these last lines were written with some bravado. Only after the surgery did I viscerally grasp that the Whipple was a permanent maiming of the GI system. My doubts lingered after I scheduled surgery, and I had a final conversation with the young oncologist at the cancer center near my home. We discussed a watch-and-wait approach. A small mass remained on CT scans, but that was common even when tumors achieved a pathological complete response.5 Another positron emission tomography scan could provide more information but could not rule out the persistence of lingering cancer cells. I expressed my low risk tolerance given my personal circumstances. We sat across from one another, two fathers with young children. My oncologist was expecting his second child in a week. He was silent for moments before responding "I would recommend surgery in your situation." Perhaps I was projecting, but I felt the two of us were in the same situation: both wanting a watch-and-wait approach, both intuitively believing in it, but both held back by a sense of parental responsibility. My post-surgery pathology revealed a pathological complete response. CT scans and circulating tumor DNA tests in the past year have shown no evidence of disease. This is an exceptional outcome. Yet in the year since my Whipple, I have been sickened by my lack of gratitude for my good fortune, driven by a difficult recovery and a sense that my surgery had been superfluous. Following surgery, I faced complications of which I had been warned, such as a pancreatic fistula, delayed gastric emptying, and pancreatic enzyme insufficiency. There were still more problems that I did not anticipate, including, among others, stenoses of arteries and veins due to intraabdominal hematomas, persistent anemia, and the loss of 25% of my body weight. Collectively, they added up to an enduringly dysfunctional GI system and a lingering frailty. I was particularly embittered to have chosen surgery to mitigate the risk that my children would lose their father, only to find that surgery prevented me from being the robust father I once was. Of course, had I deferred surgery and seen the tumor grow inoperable or metastasize between scans, my remorse would have been incalculably deeper. But should medical decisions be based on contemplation of the most catastrophic consequences, whatever their likelihood? With hindsight, it became difficult not to re-examine the assumptions behind my decision. Too often, my dialogue with my doctors was impeded by the assumption that surgery was the obvious recommendation because I was young and healthy. The assumption that younger oncology patients necessarily warrant more radical treatment deserves reassessment. While younger patients have more years of life to lose from cancer, they also have more years to deal with the enduring medical, personal, and professional consequences of a life-changing surgery. It was not my youth that led me to choose surgery but my family situation: 10 years earlier, my youth likely would have led me to a watch-and-wait approach. The rising incidence of cancer among patients in their 20s and 30s highlights the need for a nuanced approach to this demographic. Calculations on surgery versus a watch-and-wait approach in cases like mine, where there are no data showing that surgery improves outcomes, also require doctors and patients to account holistically for the severity of the surgery involved. Multiple surgeons discussed the immediate postsurgical risks and complications of a pancreaticoduodenectomy, but not the long-term challenges involved. When asked to compare the difficulty of my prior subtotal colectomy with that of a pancreatoduodenectomy, the surgeon who performed my procedure suggested they might be similar. The surgeon at the regional cancer center stated that the Whipple would be far more difficult. I mentally split the difference. The later assessment was right, and mine was not a particularly bad recovery compared with others I know. Having been through both procedures, I would repeat the subtotal colectomy for a theoretical oncologic benefit but would accept some calculated risk to avoid a Whipple. Most Whipple survivors do not have the privilege of asking whether their surgery was necessary. Many celebrate every anniversary of the procedure as one more year that they are alive against the odds. That I can question the need for my surgery speaks to the revolutionary transformation which immunotherapy has brought about for a small subset of patients with cancer. The long-term medical and personal consequences of surgery highlight the urgent stakes of fully understanding and harnessing the life-affirming potential of this technology. In the meantime, while the field accumulates more data, potentially thousands of patients and their physicians will face difficult decisions on surgery verses a watch and- wait approach in cases of GI tumors with particular biomarkers showing exceptional responses to ICI therapy.7,8 Under these circumstances, I hope that all patients can have effective and transparent conversations with their physicians that allow informed choices accounting for their risk tolerance, calculations of proportionality, and priorities. Dr. Mikkael Sekeres: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the oncology field. I'm your host, Dr. Mikkael Sekeres. I'm Professor of Medicine and Chief of the Division of Hematology at the Sylvester Comprehensive Cancer Center at University of Miami. Today, we are so happy to be joined by Dr. Carl Forsberg, Assistant Professor of Strategy and History at the Air Force War College. In this episode, we will be discussing his Art of Oncology article, "A Whipple of Choice." At the time of this recording, our guest has no disclosures. Carl, it is such a thrill to welcome you to our podcast, and thank you for joining us. Dr. Carl Forsberg: Well, thank you, Mikkael, for having me. I'm looking forward to our conversation. Dr. Mikkael Sekeres: So am I. I wanted to start, Carl, with just a little bit of background about you. It's not often we have a historian from the Air Force College who's on this podcast. Can you tell us about yourself, where you're from, and walk us through your career? Dr. Carl Forsberg: Sure. I was born and raised in Minnesota in a suburb of Minneapolis-St. Paul and then went to undergraduate on the East Coast. I actually started my career working on the contemporary war in Afghanistan, first as an analyst at a DC think tank and then spent a year in Kabul, Afghanistan, on the staff of the four-star NATO US headquarters, where I worked on the vexing problems of Afghanistan's dysfunctional government and corruption. Needless to say, we didn't solve that problem. Dr. Mikkael Sekeres: Wow. Dr. Carl Forsberg: I returned from Afghanistan somewhat disillusioned with working in policy, so I moved into academia, did a PhD in history at the University of Texas at Austin, followed by postdoctoral fellowships at Harvard and Yale, and then started my current position here at the Air Force War College. The War Colleges are, I think, somewhat unusual, unique institutions. Essentially, we offer a 1-year master's degree in strategic studies for lieutenant colonels and colonels in the various US military services. Which is to say my students are generally in their 40s. They've had about 20 years of military experience. They're moving from the operational managerial levels of command to positions where they'll be making strategic decisions or be strategic advisors. So we teach military history, strategy, international relations, national security policy to facilitate that transition to a different level of thinking. It really is a wonderful, interesting, stimulating environment to be in and to teach in. So I've enjoyed this position here at the War College quite a lot. Dr. Mikkael Sekeres: Well, I have to tell you, as someone who's been steeped in academic medicine, it sounds absolutely fascinating and something that I wouldn't even know where to start approaching. We have postdoctoral fellowships, of course, in science as well. What do you do during a postdoctoral fellowship in history and strategy? Dr. Carl Forsberg: It's often, especially as a historian, it's an opportunity to take your dissertation and expand it into a book manuscript. So you have a lot of flexibility, which is great. And, of course, a collegial environment with others working in similar fields. There are probably some similarities to a postdoc in medicine in terms of having working groups and conferences and discussing works in progress. So it was a great experience for me. My second postdoc occurred during the pandemic, so it turned out to be an online postdoc, a somewhat disappointing experience, but nevertheless I got a lot out of the connections and relationships I formed during those two different fellowships. Dr. Mikkael Sekeres: Well, there are some people who used the pandemic as an excuse to really just plow into their writing and get immersed in it. I certainly wrote one book during the pandemic because I thought, "Why not? I'm home. It's something where I can use my brain and expand my knowledge base." So I imagine it must have been somewhat similar for you as you're thinking about expanding your thesis and going down different research avenues. Dr. Carl Forsberg: I think I was less productive than I might have hoped. Part of it was we had a 2-year-old child at home, so my wife and I trying to, you know, both work remotely with a child without having childcare really for much of that year given the childcare options fell through. And it was perhaps less productive than I would have aspired for it to be. Dr. Mikkael Sekeres: It's terrifically challenging having young children at home during the pandemic and also trying to work remotely with them at home. I'm curious, you are a writer, it's part of your career, and I'm curious about your writing process. What triggers you to write a story like you did, and how does it differ from some of your academic writing? Dr. Carl Forsberg: Yeah. Well, as you say, there is a real difference between writing history as an academic and writing this particular piece. For me, for writing history, my day job, if you will, it's a somewhat slow, painstaking process. There's a considerable amount of reading and archival work that go into history. I'm certainly very tied to my sources and documents. So, you know, trying to get that precision, making sure you've captured a huge range of archival resources. The real narrative of events is a slow process. I also have a bad habit of writing twice as much as I have room for. So my process entailed a lot of extensive revisions and rewriting, both to kind of shorten, to make sure there is a compelling narrative, and get rid of the chaff. But also, I think that process of revision for me is where I often draw some of the bigger, more interesting conclusions in my work once I've kind of laid out that basis of the actual history. Certainly, writing this article, this medical humanities article, was a very different experience for me. I've never written something about myself for publication. And, of course, it was really driven by my own experiences of going through this cancer journey and recovering from Whipple surgery as well. The article was born during my recovery, about 4 months after my Whipple procedure. It was a difficult time. Obviously kind of in a bad place physically and, in my case, somewhat mentally, including the effects of bad anemia, which developed after the surgery. I found it wasn't really conducive to writing history, so I set that aside for a while. But I also found myself just fixating on this question of had I chosen a superfluous Whipple surgery. I think to some extent, humans can endure almost any suffering with a sense of purpose, but when there's a perceived pointlessness to the suffering, it makes it much harder. So for me, writing this article really was an exercise, almost a therapeutic one, in thinking through the decisions that led me to my surgery, addressing my own fixation on this question of had I made a mistake in choosing to have surgery and working through that process in a systematic way was very helpful for me. But it also, I think, gave me- I undertook this with some sense of perhaps my experience could be worthwhile and helpful for others who would find themselves in a situation like mine. So I did write it with an eye towards what would I like to have read? What would I like to have had as perspective from another patient as I grappled with the decision that I talk about in the article of getting a Whipple surgery. Dr. Mikkael Sekeres: So I wonder if I could back up a little bit. You talk about the difficulty of undergoing a Whipple procedure and of recovery afterwards, a process that took months. And this may come across as a really naive question, but as, you know, as an oncologist, my specialty is leukemia, so I'm not referring people for major surgeries, but I am referring them for major chemotherapy and sometimes to undergo a bone marrow transplant. Can you educate us what makes it so hard? Why was it so hard getting a Whipple procedure, and what was hard about the recovery? Dr. Carl Forsberg: Yeah, it was a long process. Initially, it was a 14-day stay in the hospital. I had a leaking pancreas, which my understanding is more common actually with young, healthy patients just because the pancreas is softer and more tender. So just, you know, vast amount of pancreatic fluid collecting in the abdominal cavity, which is never a pleasant experience. I had a surgical drain for 50-something days, spent 2 weeks in the hospital. Simply eating is a huge challenge after Whipple surgery. I had delayed gastric emptying for a while afterwards. You can only eat very small meals. Even small meals would give me considerable stomach pain. I ended up losing 40 lb of weight in 6 weeks after my surgery. Interestingly enough, I think I went into the surgery in about the best shape I had been in in the last decade. My surgeon told me one of the best predictors for outcomes is actual muscle mass and told me to work out for 2 hours every day leading up to my surgery, which was great because I could tell my wife, "Sorry, I'm going to be late for dinner tonight. I might die on the operating table." You can't really argue with that justification. So I went in in spectacular shape and then in 6 weeks kind of lost all of that muscle mass and all of the the strength I had built up, which just something discouraging about that. But just simply getting back to eating was an extraordinarily difficult process, kind of the process of trial and error, what worked with my system, what I could eat without getting bad stomach pains afterwards. I had an incident of C. diff, a C. diff infection just 5 weeks after the surgery, which was obviously challenging. Dr. Mikkael Sekeres: Yeah. Was it more the pain from the procedure, the time spent in the hospital, or psychologically was it harder? Dr. Carl Forsberg: In the beginning, it was certainly the physical elements of it, the difficulty eating, the weakness that comes with losing that much weight so quickly. I ended up also developing anemia starting about two or 3 months in, which I think also kind of has certain mental effects. My hemoglobin got down to eight, and we caught it somewhat belatedly. But I think after about three or 4 months, some of the challenges became more psychological. So I started to physically recover, questions about going forward, how much am I going to actually recover normal metabolism, normal gastrointestinal processes, a question of, you know, what impact would this have long-term. And then, as I mentioned as well, some of the psychological questions of, especially once I discovered I had a complete pathological response to the immunotherapy, what was the point to having this surgery? Dr. Mikkael Sekeres: And the way you explore this and revisit it in the essay is absolutely fascinating. I wanted to start at the- towards the earlier part of your essay, you write, "The surgeon's willingness to structure our conversation around the ambiguity of the case was immensely clarifying." It's fascinating. The ambiguity was clarifying to you. And the fact that you appreciated the fact that the surgeon was open to talking about this ambiguity. When do you think it's the right thing to acknowledge ambiguity in medicine, and when should we be more definitive? When do you just want someone to tell you, "Do this or do that?" Dr. Carl Forsberg: That's a great question, which I've thought about some. I think some of it is, I really appreciated the one- a couple of the oncologists who brought up the ambiguity, did it not at the beginning of the process but a few months in. You know, the first few months, you're so as a patient kind of wrapped up in trying to figure out what's going on. You want answers. And my initial instinct was, you know, I wanted surgery as fast as possible because you want to get the tumor out, obviously. And so I think bringing up the ambiguity at a certain point in the process was really helpful. I imagine that some of this has to do with the patient. I'm sure for oncologists and physicians, it's got to be a real challenge assessing what your patient wants, how much they want a clear answer versus how much they want ambiguity. I've never obviously been in the position of being a physician. As a professor, you get the interesting- you start to realize some students want you to give them answers and some students really want to discuss the ambiguities and the challenges of a case. And so I'm, I imagine it might be similar as a physician, kind of trying to read the patient. I guess in my case, the fact was that it was an extraordinarily ambiguous decision in which there wasn't data. So I think there is an element, if the data gives no clear answers, that I suppose there's sort of an ethical necessity of bringing that up with the patient. Though I know that some patients will be more receptive than others to delving into that ambiguity. Dr. Mikkael Sekeres: Well, you know, it's an opportunity for us to think holistically about our patients, and you as a patient to think holistically about your health and your family and how you make decisions. I believe that when we're in a gray zone in medicine where the data really don't help guide one decision versus the next, you then lean back towards other values that you have to help make that decision. You write beautifully about this. You say, "In the face of radical uncertainty, one must resort to basic values, and my priority is to survive for my children. A maimed, weakened father is without doubt better than no father at all." That's an incredibly deep sentiment. So, how do you think these types of decisions about treatment for cancer change over the course of our lives? You talk a lot about how you were a young father in this essay, and it was clear that that was, at least at some point, driving your decision. Dr. Carl Forsberg: Yeah, I certainly have spent a lot of time thinking about how I would have made this decision differently 10 years earlier. As I mentioned the article, it was interesting because most of my physicians, honestly, when they were discussing why surgery made sense pointed to my age. I don't think it was really my age. Actually, when I was 23, I went off to Afghanistan, took enormous risks. And to some extent, I think as a young single person in your 20s, you actually have generally a much higher risk tolerance. And I think in that same spirit, at a different, earlier, younger stage in my life, I would have probably actually been much more willing to accept that risk, which is kind of a point I try to make, is not necessarily your age that is really the deciding factor. And I think once again, if I were 70 or 60 and my children, you know, were off living their own lives, I think that also would have allowed me to take, um, greater risk and probably led me to go for a watch-and-wait approach instead. So there was a sense at which not the age, but the particular responsibilities one has in life, for me at least, figured very heavily into my medical calculus. Dr. Mikkael Sekeres: It's so interesting how you define a greater risk as watch and wait, whereas a surgeon or a medical oncologist who's making recommendations for you might have defined the greater risk to undergo major surgery. Dr. Carl Forsberg: And I thought about that some too, like why is it that I framed the watch and wait as a greater risk? Because there is a coherent case that actually the greater risk comes from surgery. I think when you're facing a life and death decision and the consequence, when you have cancer, of course, your mind goes immediately to the possibility of death, and that consequence seems so existential that I think it made watch and wait perhaps seem like the riskier course. But that might itself have been an assumption that needed more analysis. Dr. Mikkael Sekeres: Do you think that your doctor revealing that he also had young children at home helped you with this decision? Dr. Carl Forsberg: I think in some ways for a doctor it's important to kind of understand where your patient is in their own life. As a patient, it was interesting and always helpful for me to understand where my physicians were in their life, what was shaping their thinking about these questions. So I don't know if it in any way changed my decision-making, but it definitely was important for developing a relationship of trust as well with physicians that we could have that mutual exchange. I would consider one of my primary oncologists, almost something of a friend at this point. But I think it really was important to have that kind of two-way back and forth in understanding both where I was and where my physician was. Dr. Mikkael Sekeres: I like how you frame that in the sense of trust and hearing somebody who could make similar considerations to you given where he was in his family. One final question I wanted to ask you. You really elegantly at the end of this essay talk about revisiting the decision. I wonder, is it fair to revisit these types of decisions with hindsight, or do we lose sight of what loomed as being most important to us when we were making the decisions in real time? Dr. Carl Forsberg: That's a great question, one that is also, I think, inherent to my teaching. I teach military history for lieutenant colonels and colonels who very well may be required, God willing not, but may be required to make these sort of difficult decisions in the case of war. And we study with hindsight. But one thing I try to do as a professor is put them in the position of generals, presidents, who did not have the benefit of hindsight, trying to see the limits of their knowledge, use primary source documents, the actual memos, the records of meetings that were made as they grappled with uncertainty and the inherent fog of war. Because it is, of course, easy to judge these things in hindsight. So definitely, I kept reminding myself of that, that it's easy to second guess with hindsight. And so I think for me, part of this article was trying to go through, seeing where I was at the time, understanding that the decision I made, it made sense and with what I knew, it was probably the right decision, even if we can also with hindsight say, "Well, we've learned more, we have more data." A lot of historical leaders, it's easy to criticize them for decisions, but when you go put yourself in their position, see what the alternatives were, you start to realize these were really hard decisions, and I would have probably made the same disastrous mistake as they would have, you know. Let's just say the Vietnam War, we have our students work through with the original documents decisions of the Joint Chiefs in 1965. They very frequently come to the exact same conclusions as American policymakers made in 1965. It is a real risk making judgments purely on the basis of hindsight, and I think it is important to go back and really try to be authentic to what you knew at the time you made a decision. Dr. Mikkael Sekeres: What a great perspective on this from a historian. Carl Forsberg, I'd like to thank you, and all of us are grateful that you were willing to share your story with us in The Art of Oncology. Dr. Carl Forsberg: Well, thank you, and it's yeah, it's been a, it's a, I think in some ways a very interesting and fitting place to kind of end my cancer journey with the publication of this article, and it's definitely done a lot to help me work through this entire process of going through cancer. So, thank you. Dr. Mikkael Sekeres: Until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review, and be sure to subscribe so you never miss an episode. You can find all of ASCO's shows at asco.org/podcasts. Until next time, thank you so much. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Show notes:Like, share and subscribe so you never miss an episode and leave a rating or review. Guest Bio: Dr. Carl Forsberg is a Assistant Professor of Strategy and History at the Air Force War College.

Listen to ASCO's JCO Oncology Practice, Art of Oncology Practice article, "An Oncologist's Guide to Ensuring Your First Medical Grand Rounds Will Be Your Last" by Dr. David Johnson, who is a clinical oncologist at University of Texas Southwestern Medical School. The article is followed by an interview with Johnson and host Dr. Mikkael Sekeres. Through humor and irony, Johnson critiques how overspecialization and poor presentation practices have eroded what was once internal medicine's premier educational forum. Transcript Narrator: An Oncologist's Guide to Ensuring Your First Medical Grand Rounds Will Be Your Last, by David H. Johnson, MD, MACP, FASCO Over the past five decades, I have attended hundreds of medical conferences—some insightful and illuminating, others tedious and forgettable. Among these countless gatherings, Medical Grand Rounds (MGRs) has always held a special place. Originally conceived as a forum for discussing complex clinical cases, emerging research, and best practices in patient care, MGRs served as a unifying platform for clinicians across all specialties, along with medical students, residents, and other health care professionals. Expert speakers—whether esteemed faculty or distinguished guests—would discuss challenging cases, using them as a springboard to explore the latest advances in diagnosis and treatment. During my early years as a medical student, resident, and junior faculty member, Grand Rounds consistently attracted large, engaged audiences. However, as medicine became increasingly subspecialized, attendance began to wane. Lectures grew more technically intricate, often straying from broad clinical relevance. The patient-centered discussions that once brought together diverse medical professionals gradually gave way to hyperspecialized presentations. Subspecialists, once eager to share their insights with the wider medical community, increasingly withdrew to their own specialty-specific conferences, further fragmenting the exchange of knowledge across disciplines. As a former Chair of Internal Medicine and a veteran of numerous MGRs, I observed firsthand how these sessions shifted from dynamic educational exchanges to highly specialized, often impenetrable discussions. One of the most striking trends in recent years has been the decline in presentation quality at MGR—even among local and visiting world-renowned experts. While these speakers are often brilliant clinicians and investigators, they can also be remarkably poor lecturers, delivering some of the most uninspiring talks I have encountered. Their presentations are so consistently lackluster that one might suspect an underlying strategy at play—an unspoken method to ensure that they are never invited back. Having observed this pattern repeatedly, I am convinced that these speakers must be adhering to a set of unwritten rules to avoid future MGR presentations. To assist those unfamiliar with this apparent strategy, I have distilled the key principles that, when followed correctly, all but guarantee that a presenter will not be asked to give another MGR lecture—thus sparing them the burden of preparing one in the future. Drawing on my experience as an oncologist, I illustrate these principles using an oncology-based example although I suspect similar rules apply across other subspecialties. It will be up to my colleagues in cardiology, endocrinology, rheumatology, and beyond to identify and document their own versions—tasks for which I claim no expertise. What follows are the seven "Rules for Presenting a Bad Medical Oncology Medical Grand Rounds." 1. Microscopic Mayhem: Always begin with an excruciatingly detailed breakdown of the tumor's histology and molecular markers, emphasizing how these have evolved over the years (eg, PAP v prostate-specific antigen)—except, of course, when they have not (eg, estrogen receptor, progesterone receptor, etc). These nuances, while of limited relevance to general internists or most subspecialists (aside from oncologists), are guaranteed to induce eye-glazing boredom and quiet despair among your audience. 2. TNM Torture: Next, cover every nuance of the newest staging system … this is always a real crowd pleaser. For illustrative purposes, show a TNM chart in the smallest possible font. It is particularly helpful if you provide a lengthy review of previous versions of the staging system and painstakingly cover each and every change in the system. Importantly, this activity will allow you to disavow the relevance of all previous literature studies to which you will subsequently refer during the course of your presentation … to wit—"these data are based on the OLD staging system and therefore may not pertain …" This phrase is pure gold—use it often if you can. NB: You will know you have "captured" your audience if you observe audience members "shifting in their seats" … it occurs almost every time … but if you have failed to "move" the audience … by all means, continue reading … there is more! 3. Mechanism of Action Meltdown: Discuss in detail every drug ever used to treat the cancer under discussion; this works best if you also give a detailed description of each drug's mechanism of action (MOA). General internists and subspecialists just LOVE hearing a detailed discussion of the drug's MOA … especially if it is not at all relevant to the objectives of your talk. At this point, if you observe a wave of slack-jawed faces slowly slumping toward their desktops, you will know you are on your way to successfully crushing your audience's collective spirit. Keep going—you are almost there. 4. Dosage Deadlock: One must discuss "dose response" … there is absolutely nothing like a dose response presentation to a group of internists to induce cries of anguish. A wonderful example of how one might weave this into a lecture to generalists or a mixed audience of subspecialists is to discuss details that ONLY an oncologist would care about—such as the need to dose escalate imatinib in GIST patients with exon 9 mutations as compared with those with exon 11 mutations. This is a definite winner! 5. Criteria Catatonia: Do not forget to discuss the newest computed tomography or positron emission tomography criteria for determining response … especially if you plan to discuss an obscure malignancy that even oncologists rarely encounter (eg, esthesioneuroblastoma). Should you plan to discuss a common disease you can ensure ennui only if you will spend extra time discussing RECIST criteria. Now if you do this well, some audience members may begin fashioning their breakfast burritos into projectiles—each one aimed squarely at YOU. Be brave … soldier on! 6. Kaplan-Meier Killer: Make sure to discuss the arcane details of multiple negative phase II and III trials pertaining to the cancer under discussion. It is best to show several inconsequential and hard-to-read Kaplan-Meier plots. To make sure that you do a bad job, divide this portion of your presentation into two sections … one focused on adjuvant treatment; the second part should consist of a long boring soliloquy on the management of metastatic disease. Provide detailed information of little interest even to the most ardent fan of the disease you are discussing. This alone will almost certainly ensure that you will never, ever be asked to give Medicine Grand Rounds again. 7. Lymph Node Lobotomy: For the coup de grâce, be sure to include an exhaustive discussion of the latest surgical techniques, down to the precise number of lymph nodes required for an "adequate dissection." To be fair, such details can be invaluable in specialized settings like a tumor board, where they send subspecialists into rapturous delight. But in the context of MGR—where the audience spans multiple disciplines—it will almost certainly induce a stultifying torpor. If dullness were an art, this would be its masterpiece—capable of lulling even the most caffeinated minds into a stupor. If you have carefully followed the above set of rules, at this point, some members of the audience should be banging their heads against the nearest hard surface. If you then hear a loud THUD … and you're still standing … you will know you have succeeded in giving the world's worst Medical Grand Rounds! Final Thoughts I hope that these rules shed light on what makes for a truly dreadful oncology MGR presentation—which, by inverse reasoning, might just serve as a blueprint for an excellent one. At its best, an outstanding lecture defies expectations. One of the most memorable MGRs I have attended, for instance, was on prostaglandin function—not a subject typically associated with edge-of-your-seat suspense. Given by a biochemist and physician from another subspecialty, it could have easily devolved into a labyrinth of enzymatic pathways and chemical structures. Instead, the speaker took a different approach: rather than focusing on biochemical minutiae, he illustrated how prostaglandins influence nearly every major physiologic system—modulating inflammation, regulating cardiovascular function, protecting the gut, aiding reproduction, supporting renal function, and even influencing the nervous system—without a single slide depicting the prostaglandin structure. The result? A room full of clinicians—not biochemists—walked away with a far richer understanding of how prostaglandins affect their daily practice. What is even more remarkable is that the talk's clarity did not just inform—it sparked new collaborations that shaped years of NIH-funded research. Now that was an MGR masterpiece. At its core, effective scientific communication boils down to three deceptively simple principles: understanding your audience, focusing on relevance, and making complex information accessible.2 The best MGRs do not drown the audience in details, but rather illuminate why those details matter. A great lecture is not about showing how much you know, but about ensuring your audience leaves knowing something they didn't before. For those who prefer the structured wisdom of a written guide over the ramblings of a curmudgeon, an excellent review of these principles—complete with a handy checklist—is available.2 But fair warning: if you follow these principles, you may find yourself invited back to present another stellar MGRs. Perish the thought! Dr. Mikkael SekeresHello and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the oncology field. I'm your host, Mikkael Sekeres. I'm Professor of Medicine and Chief of the Division of Hematology at the Sylvester Comprehensive Cancer Center, University of Miami. What a pleasure it is today to be joined by Dr. David Johnson, clinical oncologist at the University of Texas Southwestern Medical School. In this episode, we will be discussing his Art of Oncology Practice article, "An Oncologist's Guide to Ensuring Your First Medical Grand Rounds Will Be Your Last." Our guest's disclosures will be linked in the transcript. David, welcome to our podcast and thanks so much for joining us. Dr. David JohnsonGreat to be here, Mikkael. Thanks for inviting me. Dr. Mikkael SekeresI was wondering if we could start with just- give us a sense about you. Can you tell us about yourself? Where are you from? And walk us through your career. Dr. David JohnsonSure. I grew up in a small rural community in Northwest Georgia about 30 miles south of Chattanooga, Tennessee, in the Appalachian Mountains. I met my wife in kindergarten. Dr. Mikkael SekeresOh my. Dr. David JohnsonThere are laws in Georgia. We didn't get married till the third grade. But we dated in high school and got married after college. And so we've literally been with one another my entire life, our entire lives. Dr. Mikkael SekeresMy word. Dr. David JohnsonI went to medical school in Georgia. I did my training in multiple sites, including my oncology training at Vanderbilt, where I completed my training. I spent the next 30 years there, where I had a wonderful career. Got an opportunity to be a Division Chief and a Deputy Director of, and the founder of, a cancer center there. And in 2010, I was recruited to UT Southwestern as the Chairman of Medicine. Not a position I had particularly aspired to, but I was interested in taking on that challenge, and it proved to be quite a challenge for me. I had to relearn internal medicine, and really all the subspecialties of medicine really became quite challenging to me. So my career has spanned sort of the entire spectrum, I suppose, as a clinical investigator, as an administrator, and now as a near end-of-my-career guy who writes ridiculous articles about grand rounds. Dr. Mikkael SekeresNot ridiculous at all. It was terrific. What was that like, having to retool? And this is a theme you cover a little bit in your essay, also, from something that's super specialized. I mean, you have had this storied career with the focus on lung cancer, and then having to expand not only to all of hematology oncology, but all of medicine. Dr. David JohnsonIt was a challenge, but it was also incredibly fun. My first few days in the chair's office, I met with a number of individuals, but perhaps the most important individuals I met with were the incoming chief residents who were, and are, brilliant men and women. And we made a pact. I promised to teach them as much as I could about oncology if they would teach me as much as they could about internal medicine. And so I spent that first year literally trying to relearn medicine. And I had great teachers. Several of those chiefs are now on the faculty here or elsewhere. And that continued on for the next several years. Every group of chief residents imparted their wisdom to me, and I gave them what little bit I could provide back to them in the oncology world. It was a lot of fun. And I have to say, I don't necessarily recommend everybody go into administration. It's not necessarily the most fun thing in the world to do. But the opportunity to deal one-on-one closely with really brilliant men and women like the chief residents was probably the highlight of my time as Chair of Medicine. Dr. Mikkael SekeresThat sounds incredible. I can imagine, just reflecting over the two decades that I've been in hematology oncology and thinking about the changes in how we diagnose and care for people over that time period, I can only imagine what the changes had been in internal medicine since I was last immersed in that, which would be my residency. Dr. David JohnsonWell, I trained in the 70s in internal medicine, and what transpired in the 70s was kind of 'monkey see, monkey do'. We didn't really have a lot of understanding of pathophysiology except at the most basic level. Things have changed enormously, as you well know, certainly in the field of oncology and hematology, but in all the other fields as well. And so I came in with what I thought was a pretty good foundation of knowledge, and I realized it was completely worthless, what I had learned as an intern and resident. And when I say I had to relearn medicine, I mean, I had to relearn medicine. It was like being an intern. Actually, it was like being a medical student all over again. Dr. Mikkael SekeresOh, wow. Dr. David JohnsonSo it's quite challenging. Dr. Mikkael SekeresWell, and it's just so interesting. You're so deliberate in your writing and thinking through something like grand rounds. It's not a surprise, David, that you were also deliberate in how you were going to approach relearning medicine. So I wonder if we could pivot to talking about grand rounds, because part of being a Chair of Medicine, of course, is having Department of Medicine grand rounds. And whether those are in a cancer center or a department of medicine, it's an honor to be invited to give a grand rounds talk. How do you think grand rounds have changed over the past few decades? Can you give an example of what grand rounds looked like in the 1990s compared to what they look like now? Dr. David JohnsonWell, I should all go back to the 70s and and talk about grand rounds in the 70s. And I referenced an article in my essay written by Dr. Ingelfinger, who many people remember Dr. Ingelfinger as the Ingelfinger Rule, which the New England Journal used to apply. You couldn't publish in the New England Journal if you had published or publicly presented your data prior to its presentation in the New England Journal. Anyway, Dr. Ingelfinger wrote an article which, as I say, I referenced in my essay, about the graying of grand rounds, when he talked about what grand rounds used to be like. It was a very almost sacred event where patients were presented, and then experts in the field would discuss the case and impart to the audience their wisdom and knowledge garnered over years of caring for patients with that particular problem, might- a disease like AML, or lung cancer, or adrenal insufficiency, and talk about it not just from a pathophysiologic standpoint, but from a clinician standpoint. How do these patients present? What do you do? How do you go about diagnosing and what can you do to take care of those kinds of patients? It was very patient-centric. And often times the patient, him or herself, was presented at the grand rounds. And then experts sitting in the front row would often query the speaker and put him or her under a lot of stress to answer very specific questions about the case or about the disease itself. Over time, that evolved, and some would say devolved, but evolved into more specialized and nuanced presentations, generally without a patient present, or maybe even not even referred to, but very specifically about the molecular biology of disease, which is marvelous and wonderful to talk about, but not necessarily in a grand round setting where you've got cardiologists sitting next to endocrinologists, seated next to nephrologists, seated next to primary care physicians and, you know, an MS1 and an MS2 and et cetera. So it was very evident to me that what I had witnessed in my early years in medicine had really become more and more subspecialized. As a result, grand rounds, which used to be packed and standing room only, became echo chambers. It was like a C-SPAN presentation, you know, where local representative got up and gave a talk and the chambers were completely empty. And so we had to go to do things like force people to attend grand rounds like a Soviet Union-style rally or something, you know. You have to pay them to go. But it was really that observation that got me to thinking about it. And by the way, I love oncology and I'm, I think there's so much exciting progress that's being made that I want the presentations to be exciting to everybody, not just to the oncologist or the hematologist, for example. And what I was witnessing was kind of a formula that, almost like a pancake formula, that everybody followed the same rules. You know, "This disease is the third most common cancer and it presents in this way and that way." And it was very, very formulaic. It wasn't energizing and exciting as it had been when we were discussing individual patients. So, you know, it just is what it is. I mean, progress is progress and you can't stop it. And I'm not trying to make America great again, you know, by going back to the 70s, but I do think sometimes we overthink what medical grand rounds ought to be as compared to a presentation at ASH or ASCO where you're talking to subspecialists who understand the nuances and you don't have to explain the abbreviations, you know, that type of thing. Dr. Mikkael SekeresSo I wonder, you talk about the echo chamber of the grand rounds nowadays, right? It's not as well attended. It used to be a packed event, and it used to be almost a who's who of, of who's in the department. You'd see some very famous people who would attend every grand rounds and some up-and-comers, and it was a chance for the chief residents to shine as well. How do you think COVID and the use of Zoom has changed the personality and energy of grand rounds? Is it better because, frankly, more people attend—they just attend virtually. Last time I attended, I mean, I attend our Department of Medicine grand rounds weekly, and I'll often see 150, 200 people on the Zoom. Or is it worse because the interaction's limited? Dr. David JohnsonYeah, I don't want to be one of those old curmudgeons that says, you know, the way it used to be is always better. But there's no question that the convenience of Zoom or similar media, virtual events, is remarkable. I do like being able to sit in my office where I am right now and watch a conference across campus that I don't have to walk 30 minutes to get to. I like that, although I need the exercise. But at the same time, I think one of the most important aspects of coming together is lost with virtual meetings, and that's the casual conversation that takes place. I mentioned in my essay an example of the grand rounds that I attended given by someone in a different specialty who was both a physician and a PhD in biochemistry, and he was talking about prostaglandin metabolism. And talk about a yawner of a title; you almost have to prop your eyelids open with toothpicks. But it turned out to be one of the most fascinating, engaging conversations I've ever encountered. And moreover, it completely opened my eyes to an area of research that I had not been exposed to at all. And it became immediately obvious to me that it was relevant to the area of my interest, which was lung cancer. This individual happened to be just studying colon cancer. He's not an oncologist, but he was studying colon cancer. But it was really interesting what he was talking about. And he made it very relevant to every subspecialist and generalist in the audience because he talked about how prostaglandin has made a difference in various aspects of human physiology. The other grand rounds which always sticks in my mind was presented by a long standing program director at my former institution of Vanderbilt. He's passed away many years ago, but he gave a fascinating grand rounds where he presented the case of a homeless person. I can't remember the title of his grand rounds exactly, but I think it was "Care of the Homeless" or something like that. So again, not something that necessarily had people rushing to the audience. What he did is he presented this case as a mysterious case, you know, "what is it?" And he slowly built up the presentation of this individual who repeatedly came to the emergency department for various and sundry complaints. And to make a long story short, he presented a case that turned out to be lead poisoning. Everybody was on the edge of their seat trying to figure out what it was. And he was challenging members of the audience and senior members of the audience, including the Cair, and saying, "What do you think?" And it turned out that the patient became intoxicated not by eating paint chips or drinking lead infused liquids. He was burning car batteries to stay alive and inhaling lead fumes, which itself was fascinating, you know, so it was a fabulous grand rounds. And I mean, everybody learned something about the disease that they might otherwise have ignored, you know, if it'd been a title "Lead Poisoning", I'm not sure a lot of people would have shown up. Dr. Mikkael Sekeres That story, David, reminds me of Tracy Kidder, who's a master of the nonfiction narrative, will choose a subject and kind of just go into great depth about it, and that subject could be a person. And he wrote a book called Rough Sleepers about Jim O'Connell - and Jim O'Connell was one of my attendings when I did my residency at Mass General - and about his life and what he learned about the homeless. And it's this same kind of engaging, "Wow, I never thought about that." And it takes you in a different direction. And you know, in your essay, you make a really interesting comment. You reflect that subspecialists, once eager to share their insight with the wider medical community, increasingly withdraw to their own specialty specific conferences, further fragmenting the exchange of knowledge across disciplines. How do you think this affects their ability to gain new insights into their research when they hear from a broader audience and get questions that they usually don't face, as opposed to being sucked into the groupthink of other subspecialists who are similarly isolated? Dr. David Johnson That's one of the reasons I chose to illustrate that prostaglandin presentation, because again, that was not something that I specifically knew much about. And as I said, I went to the grand rounds more out of a sense of obligation than a sense of engagement. Moreover, our Chair at that institution forced us to go, so I was there, not by choice, but I'm so glad I was, because like you say, I got insight into an area that I had not really thought about and that cross pollination and fertilization is really a critical aspect. I think that you can gain at a broad conference like Medical Grand Rounds as opposed to a niche conference where you're talking about APL. You know, everybody's an APL expert, but they never thought about diabetes and how that might impact on their research. So it's not like there's an 'aha' moment at every Grand Rounds, but I do think that those kinds of broad based audiences can sometimes bring a different perspective that even the speaker, him or herself had not thought of. Dr. Mikkael SekeresI think that's a great place to end and to thank David Johnson, who's a clinical oncologist at the University of Texas Southwestern Medical School and just penned the essay in JCO Art of Oncology Practice entitled "An Oncologist's Guide to Ensuring Your First Medical Grand Rounds Will Be Your Last." Until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review, and be sure to subscribe so you never miss an episode. You can find all of ASCO's shows at asco.org/podcasts. David, once again, I want to thank you for joining me today. Dr. David JohnsonThank you very much for having me. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Show notes: Like, share and subscribe so you never miss an episode and leave a rating or review. Guest Bio: Dr David Johnson is a clinical oncologist at the University of Texas Southwestern Medical School.

Listen to ASCO's Journal of Clinical Oncology Art of Oncology article, "Writing a Medical Memoir: Lessons From a Long, Steep Road" by David Marks, consultant at University Hospitals Bristol NHS Foundation Trust. The article is followed by an interview with Marks and host Dr. Mikkael Sekeres. Marks shares his challenging journey of writing a memoir describing his patients and career. Transcript Narrator: Writing a Medical Memoir: Lessons From a Long, Steep Road, by David Marks, PhD, MBBS, FRACP, FRCPath The purpose of this essay is to take hematologist/oncologist readers of the Journal on my challenging journey of trying to write a memoir describing my patients and career. This piece is not just for those who might wish to write a book, it also can be generalized to other creative writing such as short stories or other narrative pieces intended for publication. My experience is that many of my colleagues have considered doing this but do not know where to start and that many embarking on this journey lack the self-confidence most writers require. I also describe other issues that unexpectably arose, particularly my struggle to get the book to its intended target audience, and of writing about myself in such a personal way. In my book of semifiction, I tell the stories of my patients with leukemia, but also describe what it is like to be a physician looking after young patients with curable but life-threatening diseases. I recount my medical career and working in the United Kingdom's National Health Service (NHS), a very different health system to the one I experienced when I worked in Philadelphia during the early 1990s. Telling the stories of my patients with leukemia (and my story) was my main motivation but I also wanted to challenge my creative writing skills in a longer format. As a young person, I wrote essays and some poetry. As a hemato-oncologist, the major outputs of my writing have been over 300 scientific papers and a 230-page PhD thesis. The discipline required to write papers does help with writing a nonfiction book, and as with writing scientific papers, the first step is having a novel idea. I admired the work of Siddhartha Mukherjee ("The Emperor of all Maladies") and Mikkael Sekeres ("When Blood Breaks Down"), but I wanted to write about my patients and their effect upon me from a more personal perspective. I obtained written consent from the patients I wrote about; nearly all of them were happy for me to use their first name; they trusted me to tell their stories. All of the patients' stories have a substantial basis in fact. I also wrote about colleagues and other people I encountered professionally, but those parts were semifiction. Names, places, times, and details of events were changed to preserve anonymity. For example, one subchapter titled "A tale of two managers" comprises events that relate to a number of interactions with NHS medical managers over 30 years. The managers I wrote about represent a combination of many people, but it would not have been possible to write this while still working at my hospital. I had wanted to write a book for years but like most transplanters never had the sustained free time to jot down more than a few ideas. In the second UK lockdown of 2020 when we were only allowed to go out to work and for an hour of exercise, we all had more time on our hands. A columnist in the Guardian said that people should have a "lockdown achievement"; this would be mine. This is how I went about it. I knew enough about writing to know that I could not just go and write a book. I considered a university writing degree, but they were all online: There was not the nourishment of meeting and interacting with fellow writers. I joined two virtual writing groups and got some private sessions with the group's leader. We had to write something every week, submitted on time, and open for discussion. In one writing group, there was a no negative criticism rule, which I found frustrating, as I knew my writing was not good enough and that I needed to improve. I had no shortage of ideas, stories to tell, and patients and anecdotes to write about. I have a pretty good memory for key conversations with patients but learned that I did not have to slavishly stick to what was said. I also wrote about myself: my emotions and the obstacles I encountered. To understand how I guided my patients' journeys, my readers would need to understand me and my background. I carried a notebook around and constantly wrote down ideas, interesting events, and phrases. Every chapter underwent several drafts and even then much was totally discarded. I was disciplined and tried to write something every day, realizing that if I did not make progress, I might give up. Most days the words flowed; refining and editing what I wrote was the difficult part. Very different to Graham Greene in Antibes. He would go to his local café, write 200-400 words, then stop work for the day and have his first glass of wine with lunch before an afternoon siesta. How would I tell the story? My story was chronological (in the main), but I felt no need for the patient stories to be strictly in time order. The stories had titles and I did not avoid spoilers. "Too late" is the story of a patient with acute promyelocytic leukemia who died before she could receive specialist medical attention. This had a devastating effect on the GP who saw her that morning. So, there were plenty of patient stories to tell, but I needed to learn the craft of writing. Visual description of scenes, plots, and giving hints of what is to come—I had to learn all these techniques. Everything I wrote was looked at at least once by my mentor and beta readers, but I also submitted my work for professional review by an experienced editor at Cornerstones. This person saw merit in my work but said that the stories about myself would only interest readers if I was "somebody like David Attenborough." Other readers said the stories about me were the most interesting parts. So far, I have focused on the mechanics and logistics of writing, but there is more to it than that. My oncology colleague Sam Guglani, who has successfully published in the medical area, was very useful. I asked him how his second book was progressing. "Not very well." "Why?" "It takes a lot of time and I'm not very confident." Sam writes such lovely prose; Histories was positively reviewed yet even he still has self-doubt. Hematologists/oncologists, transplanters, and chimeric antigen receptor T cell physicians are often confident people. Most of the time we know what to do clinically, and when we give medical advice, we are secure in our knowledge. This is because we have undergone prolonged training in the areas we practice in and possess the scientific basis for our decisions. This is not the case when doctors take on creative writing. Few of us have training; it is out of our comfort zone. Nearly all new writers are insecure, in a constant state of worry that our outpourings are not "good enough," that "nobody will like it." Even high-quality memoirs may be hard to get published. I did not enter this thinking I would fail, and I have received feedback that I "can write." But when you look at people who can really write, who have already been published, and earn a living from writing, you think that you will never be as good. Does this matter for a medical memoir? Yes, it does. I came to realize to improve it is important to surround yourself with people who read a lot and preferably with some who are well-regarded published writers. These people should offer unrestrained feedback, and you should take note. However, I learned you do not need to do everything they say—it is not like responding to the reviewers of scientific papers—your book should retain your individual stamp and cover what you think is important. I found there are risks in writing a memoir. Private matters become public knowledge to your family and friends. In a hospital you have lots of work relationships, not all of which are perfect. It can be a tense environment; you often have to keep quiet. Writing about them in a book, even if colleagues and events are disguised or anonymized, runs the risk of colleagues recognizing themselves and not being happy with how they are portrayed. Writing a book's first draft is hard; getting it to its final draft even harder but perhaps not harder than writing a major paper for JCO or Blood. (For me writing the discussion section of a paper was the most difficult task). However, finding an agent is perhaps the hardest of all. Every agent has their own laborious submission system. About a third of agents do not respond at all; they may not even read your book. Another third may send you a response (after up to 3 months) saying that the book is "not for me." Three agents told me that their own experiences with cancer made it impossible for them to read the book while others said it was a worthwhile project but it was not their area of interest. That encouraged me. It required resilience to get Life Blood published. I did not have the skills to self-publish, but I found a publisher that would accept the book, provided I contributed to the costs of publishing. This was not easy either because my book did not have as much final editing as a conventional publisher provides. Getting the book to its target audience was another major challenge. A number of hematologic journals agreed to consider reviews of the book, and my colleagues were generous in offering to review it. However, I wanted my book to be read by people with cancer and their families: nearly all of us at some point in our lives. A digital marketing consultant helped me publicize the book on social media and construct a user-friendly Web site. I hope this reflection offers some encouragement for budding authors who are hematologists/oncologists. However, as all writers reading this will know, writing is a lonely pursuit; it is something you do on your own for long periods and you cannot be sure your work will ever see the light of day. One of the main ingredients is persistence; this is probably the main difference between people who finish books and those who do not. Of course there may be benefits to physicians from writing per se, even if it is never published, although most hematologists/oncologists I know are quite goal oriented. Was it all worthwhile? Yes, I think so. Writing about my career stirred up lots of memories and has been quite cathartic. Physicians often feel they have insufficient time to reflect on their practice. It made me reflect on my achievements and what I could have done better. Could I have worked harder for my patients (rarely) or thought of therapeutic interventions earlier (sometimes)? What about my professional relationships? In my efforts to do the best for my patients, was I sometimes too impatient (yes)? I hope the book inspires young people contemplating a career in hematology/oncology but also gives them a realistic idea of the commitment it requires; even relatively successful doctors encounter adversity. To all my hematologic/oncologic and transplant colleagues worldwide, if you think you have a book in you, find the time and the intellectual space, start writing but also get help. In telling the story of your patients you honor them; it is a very satisfying thing to do but there are risks. I have had lots of feedback from friends and colleagues, the great majority of it positive, but when my book was published, I prepared myself for more critical reviews. I learned a lot from writing Life Blood; at the end, I was a stronger, more secure writer and hematologist/oncologist, more confident that the story of my patients and career was worth telling and relevant to a wider audience. Dr. Mikkael Sekeres: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the oncology field. I'm your host, Dr. Mikkael Sekeres. I'm Professor of Medicine and Chief of the Division of Hematology at the Sylvester Comprehensive Cancer Center, University of Miami. And what a pleasure it is today to be joined by Professor David Marks, a consultant at University Hospitals Bristol NHS Foundation Trust in the UK. In this episode, we will be discussing his Art of Oncology article, "Writing a Medical Memoir: Lessons from a Long, Steep Road." Our guest's disclosures will be linked in the transcript. David, welcome to our podcast, and thanks so much for joining us. Professor David Marks: Thank you very much for inviting me. It's a real honor. Dr. Mikkael Sekeres: David, I really enjoyed your piece. We've never had a "how to write a memoir" sort of piece in Art of Oncology, so it was a great opportunity. And, you know, I think 30 years ago, it was extraordinarily rare to have a doctor who also was a writer. It's become more common, and as we've grown, still among our elite core of doctor-writers, we've also birthed some folks who actually write in long form—actual books, like you did. Professor David Marks: I'd sort of become aware that I wasn't the only person doing this, that there were lots of people who liked creative writing, but they had difficulties sort of turning that into a product. This was the reason for sort of writing this. I'm hardly an expert; I've only written one book, but I sort of hope that my experiences might encourage others. Dr. Mikkael Sekeres: I think it's a terrific idea. And before we get started about the book, I, of course, know you because you and I run in some of the same academic circles, but I wonder if you could tell our listeners a little bit about yourself. Professor David Marks: So, I'm Australian. That's where I did my internal medical and hematology training in Melbourne. And then I did a PhD to do with acute lymphoblastic leukemia at the University of Melbourne. I then moved to London for three years to do some specialist training in bone marrow transplantation and some lab work, before spending three years in Philadelphia, where I did transplant, leukemia, and some more lab work. And then, mainly for family reasons, moved back to the UK to take up a post in Bristol. I have retired from patient-facing practice now, although I still give medical advice, and I'm doing some consulting for a CAR T-cell company based in LA. Dr. Mikkael Sekeres: Great. And can I ask you, what drew you to focus on treating people with leukemia and doing research in that area? Professor David Marks: I think leukemia is just such a compelling disease. From really the first patient I ever looked after, there was a person who is both life-threateningly ill, has had their life turned upside down. Yet, there is—increasingly now—there's an opportunity to cure them or, at the very least, prolong their life significantly. And also, its sort of proximity to scientific research—that was the attraction for me. Dr. Mikkael Sekeres: There is something compelling about cancer stories in general. I think we talk about the privilege of doing what we do, and I think part of that is being invited into people's lives at probably one of the most dramatic moments of those lives. We're, of course, unwelcome visitors; nobody wants a diagnosis of cancer and having to have that initial conversation with an oncologist. But I wonder if, as doctors and as writers, we feel compelled to share that story and really celebrate what our patients are going through. Professor David Marks: So, that absolutely is one of my main motivations. I thought- there aren't, to my mind, all that many books out there that sort of try and tell things from both the patient with leukemia's point of view and the doctors looking after them. And I thought that their stories should be told. It's such a dramatic and frightening time, but I think the struggles that people go through in dealing with this—I think this is something I sort of felt people should have the opportunity to learn about. Dr. Mikkael Sekeres: Yeah, we're really honoring our patients, aren't we? Professor David Marks: Absolutely. When you think of the patients you've looked after, their courage, their steadfastness in dealing with things, of just battling on when they're not well and they're scared of things like dying—you've just got to admire that. Dr. Mikkael Sekeres: Yeah, yeah. David, you have a tremendous number of academic publications and have been transformative in how we treat people who have acute lymphoblastic leukemia. How did you first get into writing narrative medicine? Professor David Marks: Although I have written quite a lot scientifically, although that is incredibly different to creative writing, some of the same sort of care that one needs with a scientific paper, you do need for creative writing. I always liked English at school, and, you know, even as a teenager, I wrote some, you know, some poetry; it frankly wasn't very good, but I had a go. I came to a point where I wanted to write about my patients and a bit about my career. I had trouble finding the time; I had trouble finding the sort of intellectual space. But then COVID and lockdown occurred, and, you know, all of us had a lot more time; you know, we weren't even allowed to leave the house apart from working. So, at that point, I started writing. Prior to that, though, I had sort of kept a notebook, a quite big notebook, about stories I wanted to tell and events in my career and life that I wanted to tell. So there was something of a starting point there to go from. But when I first started writing, I realized that I just didn't know enough about writing. I needed to learn the craft of writing, and so I also joined a couple of writing groups. Dr. Mikkael Sekeres: That's—I find that absolutely fascinating. I think there are a lot of people who want to write, and there are some who have the confidence to go ahead and start writing, right? Whether they know the craft or not. And there are others who pause and say, "Wait a second, I've done a lot of reading, I've done a lot of academic writing, but I'm not sure I know how to do this in a creative way." So, what was your first step? Professor David Marks: I had sort of notes on these stories I wanted to write, and I did just try and write the sort of two- to five-page story, but I then sort of realized that it was just—it just wasn't very good. And I needed to learn really all the basic things that writers need, like developing a plot, like giving hints of what's to come, using visual description. Those things are obviously completely different to scientific writing, and I—it was a bit like going back to school, really. Dr. Mikkael Sekeres: And how did you even find writing groups that were at the right level for someone who was starting on this journey? Professor David Marks: So, I got a recommendation of a sort of local group in Bristol and a very established sort of mentor who has actually mentored me, Alison Powell. But it is difficult because some people on the group had written and published a couple of books; they were way ahead of me. And some people were just really starting out. But there were enough people at my level to give me sort of useful criticism and feedback. But yes, finding the right writing group where there's a free interchange of ideas—that is difficult. And, of course, my—what I was writing about was pretty much different to what everybody else was writing about. Dr. Mikkael Sekeres: So, you joined a writing group that wasn't specific to people in healthcare? Professor David Marks: There was something at my hospital; it was a quite informal group that I joined, and that had a whole number of healthcare professionals, but that didn't keep going. So, I joined a group that was really a mixture of people writing memoirs and also some people writing fiction. And I actually found a lot of the things that people writing fiction write, I needed to learn. A lot of those skills still apply to a sort of non-fictional or semi-fiction book. Dr. Mikkael Sekeres: You write in your Art of Oncology piece—I think a very insightful portion of it—where you're identifying people who can give you feedback about your writing, and you're looking for honest feedback. Because there are a lot of people where you might show them a piece and they say, "Gee, this is David Marks, I better say something nice. I mean, it's David Marks after all." Right? So, you don't want that sort of obsequiousness when you're handing over a piece of writing because you need truth to be told if it's compelling or if it's not compelling. How did you identify the people who could give you that honest feedback, but also people you trust? Because there are also people who might read a piece and might be jealous and say, "Gee, David's already going on this journey, and I wish I had done this years ago," and they might not give you the right kind of feedback. Professor David Marks: Yeah, I mean, one of the writing groups I joined, there was a sort of "no criticism, no negative criticism" rule, and I did not find that to be useful because I knew my writing, frankly, wasn't good enough. So, funnily enough, my wife—she's very lucky—she has this reading group that she's had for 25 years, and these are—they're all women of her age, and they are just big, big readers. And those were my principal beta readers. And I sort of know them, and they knew that I wanted direction about, you know, what was working and what was not working. And so they were fairly honest. If they liked something, they said it. And if there was a chapter they just didn't think worked, they told me. And I was really very grateful for that. The other thing I did at a sort of critical moment in the book, when I just thought I was not on track, is I sent it to a professional editor at Cornerstones. And that person I'd never met, so they had no—you know, they didn't need to sort of please me. And that review was very helpful. I didn't agree with all of it, but it was incredibly useful. Dr. Mikkael Sekeres: That's fascinating. So, I've submitted pieces in venues where people can post comments, and I always force myself to read the comments. And sometimes that hurts a little bit when you get some comments back and think, "Oh my word, I didn't mean that." Sometimes those comments illuminate things that you never intended for people to take away from the piece. And sometimes you get comments where people really like one aspect, and you didn't even know that would resonate with them. So, any comments you can think of that you got back where you thought, "Oh my word, I never intended that," or the opposite, where the comments were actually quite complimentary and you didn't anticipate it? Professor David Marks: I was reviewed by an independent reviewer for The Lancet Haematology. And you've read my book, so you sort of know that looking after people with leukemia, you do encounter quite a lot of people who die. And she sort of, almost as a criticism, said, "Professor David Marks seems to have encountered an extraordinary number of people who've died." And I thought—almost as a sort of criticism—and I thought, "I'm sort of sorry, but that's the area we occupy, unfortunately." There's lots of success, but there is, you know, sometimes we don't succeed. So I found that—I found that hard to read. But when you open yourself up as a writer, when you talk about your personal things, you've got to develop a bit of a thick skin. And I really haven't ego about my writing. I sort of still feel it's very much in its formative stages, so I'm quite open to criticism. Dr. Mikkael Sekeres: And were there comments that you got that were—you were pleasantly surprised that people liked one aspect of the book, and you didn't know it would really hit with them that way? Professor David Marks: I think they particularly liked the patient stories. There's one thing in the book about a young woman who has this amazing experience of being rescued by CAR T-cell therapy. This young lady's still alive. And that very much sort of captured the imagination of the readers. They really identified her and wanted to sort of know about her and, you know, was she still okay and so on. Dr. Mikkael Sekeres: I remember there was a piece I wrote, and included a patient, and it was an entree to write about a medical topic, and my editor got back to me and said, "What happened to the patient?" Right? People get invested in this. We've done this our entire careers for, for decades for some people who've been in the field for that long, and you forget that it's still a diagnosis, a disease that most people don't encounter in their lives, and they get invested in the patients we describe and are rooting for them and hope that they do okay. Professor David Marks: Yeah, I found people got very involved with the patients, and I've had actually several sort of inquiries; they want to know if the patients are still okay. And I think that I can definitely understand that from a sort of human level. Dr. Mikkael Sekeres: So, you wrote a memoir. How long did it take you? Professor David Marks: I suppose from the time I really started writing properly, I'd say about two and a half years. So, quite a long time. Dr. Mikkael Sekeres: Two and a half years. That can be daunting to some people. What advice would you give them if they're thinking about going down this path? Professor David Marks: I think it's a very rewarding thing to do. It is hard work, as you and I know, and it's sort of extra work. The only way to find out if you can do it is to try to do it. And try and find some time to do it, but get help. You know, seek the company of other people who are more experienced writers and sort of find a mentor. Somehow, you've got to, I guess, believe in yourself, really, and trust yourself that what you're writing about is worthwhile. And yeah, I don't know that I have specific advice for people about that aspect of things. Dr. Mikkael Sekeres: Well, I think that's a great place actually to end: to tell people to believe in themselves and trust in themselves. And I want to encourage everyone listening to this podcast to please check out Professor David Marks' book, Lifeblood: Tales of Leukemia Patients and Their Doctor. It's a terrific read. David, thank you so much for joining us today. Professor David Marks: Thanks very much, Mikkael. It's been a pleasure. Dr. Mikkael Sekeres: It's been delightful from my perspective. Until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review, and be sure to subscribe so you never miss an episode. You can find all of ASCO's shows at asco.org/podcasts. Until next time, thank you, everyone. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Show Notes: Like, share and subscribe so you never miss an episode and leave a rating or review. ADD URLhttps://ascopubs.org/journal/jco/cancer-stories-podcast Guest Bio: Professor David Marks is a consultant at University Hospitals Bristol NHS Foundation Trust in the UK. Additional Reading: Life Blood: Stories of Leukaemia Patients and Their Doctor, by David Marks

Listen to ASCO's Journal of Clinical Oncology Art of Oncology article, "Tamales" by Megan Dupuis, an Assistant Professor of Hematology and Oncology at Vanderbilt University Medical Center. The article is followed by an interview with Dupuis and host Dr. Mikkael Sekeres. Dupuis reflects on how patients invite their doctors into their culture and their world- and how this solidified her choice to be an oncologist. TRANSCRIPT Narrator: Tamales, by Megan Dupuis, MD, PhDI do not know if you know this, but tamales are an important—nay, critical—part of the Mexican Christmas tradition. Before I moved to Texas, I certainly did not know that. I did not know that the simple tamal, made of masa flour and fillings and steamed in a corn husk, is as essential to the holiday season as music and lights. Whole think pieces have been written in The Atlantic about it, for God's sake. But, I did not know that. A total gringa, I had grown up in upstate NY. We had the middle-class American version of Christmas traditions—music, snow, Santa, and a Honey Baked Ham that mom ordered 2 weeks before the holiday. I had never tried a homemade tamal until I moved to Texas. We had relocated because I was starting a fellowship in hematology/oncology. A central part of our training was the privilege of working at the county hospital cancer clinic. Because we were the safety-net hospital, our patients with cancer were often under- or uninsured, frequently had financial difficulty, and were almost always immigrants, documented or otherwise. In a typical clinic day, over 90% of my patients spoke Spanish; one or two spoke Vietnamese; and typically, none spoke English. From meeting my very first patient in clinic, I knew this was where I needed to be. Have you ever been unsure of a decision until you have been allowed to marinate in it? That is how I felt about cancer care; I had not been sure that my path was right until I started in the county oncology clinic. I loved absorbing the details of my patients' lives and the cultures that centered them: that Cuban Spanish is not Mexican Spanish and is not Puerto Rican Spanish; that many of my patients lived in multigenerational homes, with abuelos and tios and nietos all mixed together; and that most of them continued to work full-time jobs while battling cancer. They had hobbies they pursued with passion and lived and died by their children's accomplishments. I learned these details in the spaces between diagnosis and treatment, in the steady pattern woven in between the staccato visits for chemotherapy, scans, pain control, progression, and hospice. In one of those in-betweens, my patient Cristina told me about tamales. She had faced metastatic breast cancer for many years. She was an impeccable dresser, with matching velour tracksuits or nice slacks with kitten heels or a dress that nipped in at the waist and flared past her knees. Absolutely bald from treatment, she would make her hairlessness look like high fashion rather than alopecia foisted upon her. Her makeup was always painstakingly done and made her look 10 years younger than her youthful middle age. At one visit in August, she came to clinic in her pajamas and my heart sank. This was a familiar pattern to me by now; I had taken care of her for 2 years, and pajamas were my canary in the coal mine of progressing cancer. So on that sunny day, I asked Cristina what her goals would be for the coming months. The cancer had circumvented many of her chemotherapy options, and I only had a few left. "Doctora D, I know my time is limited…" she started in Spanish, with my interpreter by my side translating, "but I would really like to make it to Christmas. My family is coming from Mexico." "Oh that's lovely. Do you have any special Christmas plans?" I ventured, wanting to understand what her holidays look like. "Plans? Doctora D, of course we are making tamales!" She laughed, as though we were both in on a joke. "Tamales? At Christmas?" I asked, signaling her to go on. "Yes yes yes, every year we make hundreds and hundreds of tamales, and we sell them! And we use the money to buy gifts for the kids, and we eat them ourselves too. It is tradicio´ n, Doctora D." She underlined tradicio´ n with her voice, emphasizing the criticality of this piece of information. "Okay," I said, pausing to think—December was only four months away. "I will start a different chemotherapy, and we will try to get you to Christmas to make your tamales." Cristina nodded, and the plan was made. Later that evening, I asked one of my cofellows, a Houston native, about tamales. He shared that these treats are an enormous part of the Houston Christmas tradition, and if I had any sense, I would only purchase them from an abuela out of the trunk of a car. This was the only way to get the best homemade ones. "The ones from restaurants," he informed me, "are crap." So summer bled into fall, and fall became what passes for winter in Texas. On 1 day in the middle of December, Cristina came into clinic, dressed in a colorful sweater, flowing white pants, black boots, and topped off with Barbie-pink lipstick. "Cristina!" I exclaimed, a bit confused. "You don't have an appointment with me today, do you?" She grinned at me and held up a plastic grocery bag with a knot in the handles, displaying it like a prize. "Tamales, Doctora D. I brought you some tamales so you can join our Christmas tradition." I felt the sting of tears, overwhelmed with gratitude at 11:30 in a busy county clinic. I thanked her profusely for my gift. When I brought them home that night, my husband and I savored them slowly, enjoying them like you would any exquisite dish off a tasting menu. Sometimes, people think that oncologists are ghouls. They only see the Cristinas when they are in their pajamas and wonder why would any doctor ever give her more treatment? My answer is because I also got to see her thriving joyfully in track suits and lipstick, because I got to spend countless in-betweens with her, and because I helped get her to the Christmas tradiciones I only knew about because of her. And in return, she gave of herself so easily, sharing her life, her passion, her struggles, and her fears with me. Caring for Cristina helped me marinate in the decision to become an oncologist and know that it was the right one. And if you are wondering—yes. Now tamales are a Christmas tradicio´n in the Dupuis household, too. Mikkael Sekeres: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the oncology field. I'm your host, Mikkael Sekeres. I'm a professor of Medicine and Chief of the Division of Hematology at the Sylvester Comprehensive Cancer Center, University of Miami. What a pleasure it is today to be joined by Dr. Megan Dupuis from Vanderbilt University Medical Center. She is Assistant Professor of Hematology and Oncology and Associate Program Director for the Fellowship program. In this episode, we will be discussing her Art of Oncology article, "Tamales." Our guest's disclosures will be linked in the transcript. Both she and I have talked beforehand and agreed to refer to each other by first names. Megan, welcome to our podcast, and thank you for joining us. Megan Dupuis: Oh, thanks so much for having me, Mikkael. I'm excited to be here. Mikkael Sekeres: I absolutely loved your piece, "Tamales," as did our reviewers. It really did resonate with all of us and was beautifully and artfully written. I'm wondering if we could just start—tell us about yourself. Where are you from, and where did you do your training? Megan Dupuis: Sure. I'm originally from upstate New York. I grew up outside of Albany and then moved for college to Buffalo, New York. So I consider Buffalo home. Big Buffalo Bills fan. And I spent undergrad, medical school, and my PhD in tumor immunology at the University of Buffalo. My husband agreed to stick with me in Buffalo for all twelve years if we moved out of the cold weather after we were done. And so that played some factor in my choice of residency program. I was lucky enough to go to Duke for residency—internal medicine residency—and then went to MD Anderson for fellowship training. And then after Anderson, I moved up to Nashville, Tennessee, where I've been at Vanderbilt for almost four years now. Mikkael Sekeres: That's fantastic. Well, I have to say, your Bills have outperformed my Pittsburgh Steelers the past few years, but I think I think we have a chance this coming year. Megan Dupuis: Yeah. Yep. Yep. I saw they were thinking about signing Aaron Rodgers, so we'll see how that goes. Mikkael Sekeres: Yeah, not going to talk about that in this episode. So, I'm curious about your story as a writer. How long have you been writing narrative pieces? Megan Dupuis: I have always been a writer—noodled around with writing and poetry, even in college. But it was when I started doing my medicine training at Duke that I started to more intentionally start writing about my experiences, about patients, things that I saw, things that weighed either heavily on me or made a difference. So when I was at Duke, there was a narrative medicine writing workshop—it was a weekend workshop—that I felt like changed the trajectory of what my interest is in writing. And I wrote a piece at that time that was then sort of critiqued by colleagues and friends and kicked off my writing experience. And I've been writing ever since then. We formed a narrative medicine program at Duke out of this weekend workshop experience. And I carried that through to MD Anderson when I was a fellow. And then when I joined at Vanderbilt, I asked around and said, "Hey, is there a narrative medicine program at Vanderbilt?" And somebody pointed me in the direction of a colleague, Chase Webber, who's in internal medicine, and they said, "Hey, he's been thinking about putting together a medical humanities program but needs a co-conspirator, if you will." And so it was perfect timing, and he and I got together and started a Medical Humanities Certificate Program at Vanderbilt about four years ago. And so- Mikkael Sekeres: Oh, wow. Megan Dupuis: Yeah. So I've been doing this work professionally, but also personally. You know, one of the things that I have been doing for a long time is anytime there's an experience that I have that I think, "Gosh, I should write about this later," I either dictate it into my phone, "write about this later," or I write a little message to myself, "Make sure that you remember this experience and document it later." And I keep a little notebook in my pocket specifically to do that. Mikkael Sekeres: Well, it's really a fabulous, updated use of technology compared to when William Carlos Williams used to scribble lines of poetry on his prescription pad and put it in his rolltop desk. Megan Dupuis: Although I will admit, you know, I don't think I'm much different. I still do prefer often the little leather notebook in the pocket to dictating. It'll often be when I'm in the car driving home from a clinic day or whatever, and I'll go, "Oh, I have to write about this, and I can't forget." And I'll make myself a little digital reminder if I have to. But I still do keep the leather notebook as well for the more traditional type of writing experience. Mikkael Sekeres: I'm curious about what triggers you to dictate something or to scribble something down. Megan Dupuis: I think anything that gives me an emotional response, you know, anything that really says, "That was a little bit outside the normal clinical encounter for me." Something that strikes me as moving, meaningful—and it doesn't have to be sad. I think a lot of novice writers about medical writing think you have to write only the tragic or the sad stories. But as often as not, it'll be something incredibly funny or poignant that a patient said in clinic that will make me go, "Ah, I have to make sure I remember that for later." I think even surprise, you know? I think all of us can be surprised in a clinical encounter. Something a patient says or something a spouse will reflect on will make me sit back and say, "Hmm, that's not what I expected them to say. I should dive into why I'm surprised by that." Mikkael Sekeres: It's a great notion as a starting point: an emotional connection, a moment of surprise. And that it doesn't have to be sad, right? It can be- sometimes our patients are incredibly inspirational and have great insights. It's one of the marvelous things about the career we've chosen is that we get to learn from people from such a variety of backgrounds. Megan Dupuis: That's it. It's a privilege every day to be invited into people's most personal experiences, and not just the medical experience. You know, I say to my patients, "I think this cancer diagnosis is in some ways the least interesting thing about you. It's not something you pick. It's not a hobby you cultivate. It's not your family life. It's a thing that's happened to you." And so I really like to dive into: Who are these people? What makes them tick? What's important to them? My infusion nurses will say, "Oh, Dr. D, we love logging in and reading your social histories," because, yeah, I'll get the tobacco and alcohol history, or what have you. But I have a little dot phrase that I use for every new patient. It takes maybe the first five or six minutes of a visit, not long. But it's: Who are you? What's your preferred name? Who are your people? How far do you live from the clinic? What did you used to do for work if you're retired? If you're not retired, what do you do now? What are the names of your pets? What do you like to do in your spare time? What are you most proud of? So those are things that I ask at every new patient encounter. And I think it lays the foundation to understand who's this three-dimensional human being across from me, right? What were they like before this diagnosis changed the trajectory of where they were going? To me, that's the most important thing. Mikkael Sekeres: You've so wonderfully separated: The patient is not the diagnosis; it's a person. And the diagnosis is some component of that person. And it's the reason we're seeing each other, but it doesn't define that person. Megan Dupuis: That's right. We're crossing streams at a very tough point in their life. But there was so much that came before that. And in the piece that I wrote, you know, what is the language? What is the food? What is the family? What are all of those things, and how do they come together to make you the person that you are, for what's important to you in your life? And I think as oncologists, we're often trying to unravel in some way what is important. I could spend all day talking to you about PFS and OS for a specific drug combination, but is that really getting to meeting the goals of the patient and where they're at? I think it's easy to sort of say, "Well, this is the medicine that's going to get you the most overall survival." But does it acknowledge the fact that you are a musician who can't have neuropathy in your fingers if you still want to play? Right? So those things become incredibly important when we're deciding not just treatment planning, but also what is the time toxicity? You know, do you have the time and ability to come back and forth to clinic for weekly chemotherapy or what have you? So those things, to me, become incredibly important when I'm talking to a person sitting across from me. Mikkael Sekeres: Do your patients ever get surprised that you're asking such broad questions about their life instead of narrowing down to the focus of their cancer? Megan Dupuis: Sometimes. I will say, sometimes patients are almost so anxious, of course, with this new diagnosis, they want to get into it. You know, they don't want to sit there and tell me the name of the horses on their farm, right? They want to know, "What's the plan, doc?" So I acknowledge that, and I say to them in the beginning, "Hey, if you give me five minutes of your time to tell me who you are as a person, I promise this will come back around later when we start talking about the options for treatments for you." Most of the time, though, I think they're just happy to be asked who they are as a person. They're happy that I care. And I think all of us in oncology care—I think that's... you don't go into a field like this because you're not interested in the human experience, right? But they're happy that it's demonstrable that there is a... I'm literally saying, "What is the name of your dog? What is the name of your child who lives down the street? Who are your kids that live far away? You know, do you talk to them?" They want to share those things, and they want to be acknowledged. I think these diagnoses can be dehumanizing. And so to rehumanize somebody does not take as much time as we may think it does. Mikkael Sekeres: I 100% agree with you. And there can be a selfish aspect to it also. I think we're naturally curious people and want to know how other people have lived their lives and can live those lives vicariously through them. So I'm the sort of person who likes to do projects around the house. And I think, to the dismay of many a professional person, I consider myself an amateur electrician, plumber, and carpenter. Some of the projects are actually up to code, not all. But you get to learn how other people have lived their lives and how they made things. And that could be making something concrete, like an addition to their house, or it can be making a life. Megan Dupuis: Yeah, I love that you say that it is selfish, and we acknowledge that. You know, sometimes I think that we went into internal medicine and ultimately oncology... and I don't mean this in a trite way: I want the gossip about your life. I want the details. I want to dig into your hobbies, your relationships, what makes you angry, what makes you excited. I think they're the fun things to learn about folks. Again, in some ways, I think the cancer diagnosis is almost such a trite or banal part of who a human is. It's not to say that it's not going to shape their life in a very profound way, but it's not something they picked. It's something that happened to them. And so I'm much more excited to say, "Hey, what are your weekend hobbies? Are you an amateur electrician?" And that dovetails deeply into what kind of treatment might help you to do those things for longer. So I think it is a little bit selfish that it gives me a lot of satisfaction to get to know who people are. Mikkael Sekeres: So part of what we're talking about, indirectly, is the sense of otherness. And an undercurrent theme in your essay is otherness. You were an 'other' as a fellow in training and working in Texas when you grew up in upstate New York. And our patients are also 'others.' They're thrust into this often complicated bedlam of cancer care. Can you talk about how you felt as an 'other' and how that's affected your approach to your patients? Megan Dupuis: I think in the cancer experience, we are 'other,' definitionally, from the start, for exactly the reasons that you said. I'm coming to it as your physician; you're coming to it as my patient. This is a new encounter and a new experience for both of us. I think the added layer of being this person from upstate New York who didn't... I mean, I minored in Spanish in college, but that's not the same thing as growing up in a culture that speaks Spanish, that comes from a Spanish-speaking country—the food, the culture. It's all incredibly different. And so the way that I approached it there was to say, "I am genuinely curious. I want to know what it's like to be different than the culture that I was raised in." And I'm excited to know about that thing. And I think we can tell—I think, as humans—when somebody is genuinely curious about who you are and what's important to you, versus when they're kind of just checking the boxes to try to build a relationship that's necessary. I think my patients could tell that even though I'm not necessarily speaking their language, I want to know. I ask these questions because I want to know. I think if you go to it from a place of curiosity, if you are approaching another person with a genuine sense of curiosity... You know, Faith Fitzgerald wrote her most remarkable piece on curiosity many, many years ago. But even the quote-unquote "boring" patient, as she put it, can have an incredible story to tell if you're curious enough to ask. And so I think that no matter how different I might be culturally from the patient sitting across from me, if I approach it with a genuine sense of curiosity, and they can sense that, that. that's going to build the bond that we need truly to walk together on this cancer journey. I think it's curiosity, and I think it's also sharing of yourself. I think that nobody is going to open up to you if they feel that you are closed to sharing a bit of yourself. Patients want to know who their doctor is, too. So when I said I asked those five or six minutes' worth of questions at the beginning of a new patient encounter, I share that info with them. I tell them where I live, how long it takes for me to get to clinic, who my people are, the name of my dog, what I like to do in my spare time, what I'm proud of. So I share that with them too, so it doesn't feel like a one-way grilling. It feels like an introduction, a meeting, the start of a... I don't want to say friendship necessarily, but a start of a friendliness, of a shared communal experience. Mikkael Sekeres: Well, it's a start of a relationship. And you can define 'relationship' with a broad swath of definitions, right? Megan Dupuis: That's right. Mikkael Sekeres: It can be a relationship that is a friendship. It can be a relationship that's a professional relationship. And just like we know some personal things about some of our colleagues, the same is true of our patients. I was wondering if I could pick up on... I love that notion of curiosity that you brought out because that's something I've thought a lot about, and I've thought about whether it could be at least one way to combat burnout. So could you put that in context of burnout? Do you think maintaining that curiosity throughout a career is one potential solution to burnout? And do you think that being open with yourself also helps combat burnout, which is counterintuitive to what we've always been taught? Megan Dupuis: Wow. I think that this is such an important question, and it's almost like you read my justification for a Medical Humanities Certificate Program. One of the foundational arguments for why I thought the GME should support the creation of this program at Vanderbilt was because we hypothesized that it would improve burnout. And one of the arms of that is because it engenders a sense of genuine curiosity. When you're thinking about the arms of burnout: it's loss of meaning in your work; it's depersonalization of patients, right, when they're treated as objects or numbers or a ticket in the system that you have to shuffle through; when it's disconnection from the work that you do. I absolutely think that curiosity is an antidote to burnout. I don't think it's the whole solution, perhaps, because I think that burnout also includes systemic injury and structures of our medical healthcare system that no individual can fix in a vacuum. But I do think when we're thinking about what are the changes that we as individual physicians can make, I do think that being open and curious about your patient is one of the best salves that we have against some of these wounds. You know, I've never left a room where a patient has shared a personal story and felt worse about it, right? I've always felt better for the experience. And so I do think curiosity is an incredibly important piece of it. It's hard, I will acknowledge. It's hard for the speed that we move through the system, the pace that we move through the system. And I'm thinking often about my trainees—my residents, my fellows—who are seeing a lot, they're doing a lot, they are trying to learn and drink from the fire hose of the pace of medical development, checking so many boxes. And so to remain curious, I think at times can feel like a luxury. I think it's a luxury I have boomeranged back into as an attending. You know, certainly as a resident and a fellow, I felt like, "Gosh, why does this attending want to sit and chitchat about this person's music career? I'm just trying to make sure their pain is controlled. I'm trying to make sure they get admitted safely. I'm trying to make sure that they're getting the right treatment." And I think it's something that I've tried to teach my trainees: "No, we have the time. I promise we have the time to ask this person what their childhood was like," if that's something that is important to the narrative of their story. So it sometimes feels like a luxury. But I also think it's such a critical part of avoiding or mitigating the burnout that I know all of us face. Mikkael Sekeres: I think you touched on a lot of really important points. Burnout is so much more complicated than just one inciting factor and one solution. It's systemic. And I love also how you positioned curiosity as a bit of a luxury. We have to have the mental space to also be curious and engaged enough in our work that we can take interest in other people. I wanted to touch on one more question. You write in your essay that a patient in pajamas is a canary in the coal mine for deteriorating health. And I completely, completely agree with that. I can vividly recall a number of patients where I saw them in my clinic, and I would look down, and they had food spilled on their sweatshirt, or they were wearing mismatched socks, or their shoes weren't tied. And you thought to yourself, "Gee, this person is not thriving at home." Do you think telemedicine has affected our ability to recognize that in our patients? Megan Dupuis: Yes, I do think so. I can remember vividly being a fellow when COVID first began in 2020, and I was training in an environment where most of my patients spoke Spanish or Vietnamese. And so we were doing not just telemedicine; we were doing telephone call clearance for chemotherapy because a lot of the patients didn't have either access to the technology or a phone that had video capability. A lot of them had flip phones. And trying to clear somebody for chemotherapy over the phone, I'll tell you, Mikkael, was the number one way to lead to a recipe of moral injury and burnout. As a person who felt this deep responsibility to do something safe... I think even now with telemedicine, there are a lot of things that you can hide from the waist down, right? If you can get it together enough to maybe just put a shirt on, I won't know that you're sitting there in pajama bottoms. I won't know that you're struggling to stand or that you're using an assistive device to move when you used to be able to come into clinic without one, or that your family member is helping you negotiate stepping over the curb in clinic. These are real litmus tests that you and I, all of us, use when we're deciding whether somebody is safe to receive a treatment. And I think telemedicine does mask some of that. Now, on the other hand, does telemedicine provide an access point for patients that otherwise it would be a challenge to drive into clinic for routine visits and care? It does, and I think it's been an incredible boon for patients who live far away from the clinic. But I think we have to use it judiciously. And there are patients where I will say, "If you are not well enough to get yourself to clinic, I worry that you are not well enough to safely receive treatment." And when I'm thinking about the rules of chemo, it's three: It has to be effective, right? Cancer decides that. It has to be something the patient wants. They decide. But then the safety piece—that's my choice. That's my responsibility. And I can't always decide safety on a telemedicine call. Mikkael Sekeres: I completely agree. I've said to my patients before, "It's hard for me to assess you when I'm only seeing 40% of you." So we will often negotiate them having to withstand the traffic in Miami to come in so I can feel safe in administering the chemotherapy that I think they need. Megan Dupuis: That's exactly right. Mikkael Sekeres: Megan Dupuis, it has been an absolute delight getting to chat with you. It has been just terrific getting to know you and talk about your fabulous essay, "Tamales." So thank you so much for joining me. Megan Dupuis: Thank you for having me. It was a wonderful time to chat with you as well. Mikkael Sekeres: Until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review, and be sure to subscribe so you never miss an episode. You can find all of ASCO's shows at asco.org/podcasts. Thank you again. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Like, share and subscribe so you never miss an episode and leave a rating or review. Guest Bio: Dr Megan Dupuis is an Assistant Professor of Hematology and Oncology at Vanderbilt University Medical Center.

Listen to ASCO's Journal of Clinical Oncology Art of Oncology poem, "The First Hero" by Christopher Kim, who is a research assistant at Institute for Stem Cell Biology and Regenerative Medicine at Stanford University. The poem is followed by an interview with Kim and host Dr. Mikkael Sekeres. Kim reflects on his post-surgery sonnet. TRANSCRIPT Narrator: The First Hero, by Christopher Kim, BS When he is like this—eyes closed, face still— he is unfamiliar. He wears a face younger than usual; fragile limbs washed in fluorescent light, eyes blurred with a diagnosis or ripe hyacinths or the last words we shared. Be good, son. Be bright. When he is still, anesthetized into memory, so too are the aphids in the garden. Lines of buzzing bodies descended from flight but clustered in quiet surrender. Fathers of sons who are trying to heal, who are failing, who retreat into the silence of sterile rooms. A heartbeat stutters and everything sings. Like the birds we watch outside the ICU window: how they peck at unyielding concrete and fill themselves with sharpness, their bodies frenzied, their bodies temporary. Mikkael Sekeres: Hello and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the oncology field. I'm your host, Mikkael Sekeres. I'm Professor of Medicine and Chief of the Division of Hematology at the Sylvester Comprehensive Cancer Center, University of Miami. Today, I am so thrilled to be joined by Christopher Kim. He's a research assistant at the Institute for Stem Cell Biology and Regenerative Medicine at Stanford University. In this episode, we will be discussing his Art of Oncology poem, "The First Hero." At the time of this recording, our guest has no disclosures. Both he and I have agreed to address each other by first names during the podcast. Chris, welcome to our podcast and thank you for joining us. Christopher Kim: Of course. Thank you so much for having me. It's just such an honor to be here. Mikkael Sekeres: We absolutely loved your poem. It was incredible and addressed a topic I think a lot of us face at some point in our lives and that's when we see a family member who's sick. Before we get into that, I was wondering if you can tell us a little bit about yourself. Where are you from and how did you get to this point? Christopher Kim: Absolutely, yeah. As you mentioned before, I'm working as a research assistant at the Stanford Medical School and I pretty much only recently graduated from college so I feel like I'm still in this like 'in between' stage. I'm a Bay Area native. I went to Stanford for undergrad, just kind of stayed on with the lab that I worked with while I was an undergrad. I would like to go on to medical school in the future. I'm learning a lot working as a research assistant, getting some hands-on experience with basic biology research. And another thing about myself is I'm an avid musician, play violin, play guitar. I like to sing. And of course, I really enjoy writing as well. Mikkael Sekeres: That's a great background. Well, we definitely need more doctors who are writers, musicians and singers. So you fit that bill. And then the fact that you do some lab based research is just amazing. You sound like a polymath. Christopher Kim: Oh, I don't know about that. I try my best. Mikkael Sekeres: Can you tell us a little bit about your own story as a writer? How long have you been writing poetry? When did you get started? And how did you get started? Christopher Kim: Yeah, absolutely. So, I've always written sort of on my own, so I don't think I ever had the courage to share my writing with others because, you know, it's kind of a vulnerable thing to share your inner thoughts with someone. So I have been kind of writing on my own since maybe late middle school and early high school. That's when I started putting my thoughts onto paper. But I only recently started to submit my poetry to, you know, these journals because, you know, after a while I was thinking, I think they're worth sharing with others because maybe some people may be going through similar situations where they can feel a little bit encouraged by the words that I write in terms of, you know, feeling the emotions that they feel. Mikkael Sekeres: Well, lucky for us, you made that decision. So when you were an undergrad, did you take any writing courses? Because it's interesting, you've been in the area of writing since you were in middle school, high school. That must have continued through college. And sometimes formal courses help us refine those skills. But then there are also plenty of examples of people who just did it on their own. Christopher Kim: Absolutely. The main writing course I took, funnily enough, they weren't really creative writing courses. They were more rhetoric based or kind of just like the regular English writing classes at college undergraduates take. However, I did have a group of friends who I would share my writing with. I think that was like the most important part of my sort of evolution as a writer. Because before I would just kind of write on my own and maybe kind of hide it away, you know, in my little locked box, I guess. But then having this opportunity to meet other people my age, my peers, who, you know, I finally gained enough kind of courage to– I say courage, but I really mean, like I finally gained enough comfort to share it with them. And, you know, gaining their feedback and seeing their response was really the most important part of, I think, my writing in college. So not necessarily like formal classes, but more like the people I met and how they responded to my writing, which is- I'm really thankful for them. Mikkael Sekeres: You know, it's so interesting because there is this temptation to be like Emily Dickinson and write your poems and squirrel them away in your desk and never show them to anyone. And then, you know, the body of your work is discovered posthumously, which I think is kind of sad. I mean, you know, great that we have Emily Dickenson poetry, but it would have been nice that, you know, she had known how appreciated she was during her lifetime. Christopher Kim: Oh, absolutely. Mikkael Sekeres: And I think the hardest first step is that word that you use, courage. The courage to identify people outside of ourselves, to share our poetry with, or our narrative pieces. So how did you find those people? Christopher Kim: It's often the case that, you know, you make your closest friends when you kind of struggle together. So I think a lot of these friends I met were through taking courses together that were difficult and that sort of combined, I don't want to say misery, that's maybe too strong a word, combined struggle against one common goal. I think that's when we started becoming close. And then it was like outside of a writing context. But I think, I don't know, it's like part luck and part finding these people in these classes and then having conversations with them late at night and then eventually going towards sharing your arts, whatever. Some of them are musicians. They share their music. Some of us share our writing. Mikkael Sekeres: Yeah. No, I hear you. There's that shared experience of being in difficult situations. I think a lot of us who've gone through undergrad and med school and then became doctors and started our training, we have incredibly close friends. We met in our residencies and fellowship because those were major stressor points in our lives and major transitional phases also when we felt that we grew. The other aspect that I've heard in identifying people to be first readers of your poetry or prose is to identify people you trust. People who are friends will give you a good read, will be appropriately critical, and will also be encouraging. You need those people to feed back to you truth about the quality of your writing and provide substantive criticism that helps you grow as a writer. Christopher Kim: Definitely agree. You know, you've found your true friends when they're not afraid to criticize you because they're so close to you and they really want you to be better. So, yeah, I definitely agree with that. Mikkael Sekeres: Yeah. And those who will take it seriously where, I think plenty of times in my own life where I've given a piece of writing to somebody, hoping for good feedback, and then you feel like you have to hound them to finally get that feedback. And obviously they're not invested in it, as opposed to a trusted body of readers where they are going to take it seriously, they're going to read it closely, and then they're going to get back to you without you feeling as if you're imposing on them. Christopher Kim: Absolutely. Yeah. It's very valuable once you've found that group of people or friends, and you know, I still contact them regularly today. So, yeah, as you mentioned, you know, I think it's definitely like maybe a lifelong process or lifelong friendship where you can always go back to them for sort of that support. And you also are able to provide that support for your friends, too. Mikkael Sekeres: Yeah. I'm curious about your writing process. What triggers you to start a poem? And, you know, how do you face that dreaded blank page? Christopher Kim: Bay Area traffic can be very long and the commute can be pretty rough. Mikkael Sekeres: Not at all like that in Miami, by the way. In Miami, we just breeze through traffic. Yeah, not at all. Christopher Kim: I would love to visit someday to compare. But yeah, Bay Area traffic can be pretty rough. As much as I love podcasts and music, there comes a point where I kind of run out of things to listen to after a while. So I really found myself driving along, but then letting my thoughts wander. And funnily enough, that's when my creative inspirations hit. Maybe it's because there's something about driving that's like the perfect amount of not thinking. You know, it's like an automatic process and that let's your– obviously I'm paying attention to the road - but you kind of let your mind wander through creative thoughts, and that's on place of creative inspiration. I've had close family members who have struggled with cancer specifically, and other serious health issues, and I've had experiences being a caretaker for them, like 'The First Hero'. Being in that position really inspires you to write, I think, for me. Mikkael Sekeres: So I wonder if I could follow up on that and if you're only comfortable doing so. Can you tell us what prompted you to write "The First Hero"? Christopher Kim: So it's kind of a combination of experiences. My grandfather struggled with cancer for a long time, and eventually he passed away from cancer. Mikkael Sekeres: I'm sorry. Christopher Kim: I appreciate that. Thank you. And he had cancer when I was a young child, which luckily went into remission for a couple years. But then later on, you know, as I started college, that's when it came back, and that's when he passed. And I think seeing his struggles with cancer, that was one big part of inspiration for this poem. But also another thing was my father also went through some health issues where he had to go through surgery and a long period of recovery, and he still kind of struggles with some issues today. And seeing people that you love that much in a position where it's really hard, especially when they're father figures in your life. They're your grandfather and your father. And, you know, when you're a kid, you know, your dad is like, they're a superhero. Your dad is the hero who can do anything, who can achieve any answer, any question you have, who can build anything you want, can buy you things, you know, all that stuff. But now seeing them in this reverse state of being vulnerable and not being able to do too much, it really affected me. And those two experiences were my main inspiration for this poem. Mikkael Sekeres: That was really beautifully said, Chris. I'm a parent of three, and I think that it comes with a lot of responsibility to remember that just carrying the title of mom or dad implies so much to one of your own children that you have to remember the import of everything that you do for them, for your kids, and everything that you say. And it carries just that much added significance because of the role we play as parents. It's so interesting to hear it enunciated by you in that way as well. And I think part of what makes good parents, there are a thousand things that go into the formula of a good parent, and we only know for sure if we made it, if, depending on the amount of therapy our kids have to go through when they're older, right? I think part of that, though, is remembering the great responsibility that comes with just simply the title of being a parent. Christopher Kim: Absolutely. Mikkael Sekeres: You started to talk a little bit about this. I'm curious about how the dynamic between parents and children changes when a parent is sick. Christopher Kim: Yeah, it's kind of a reversal of roles in a way, because your parents, when you're born, you're the most vulnerable. They're responsible for sort of ushering you into this world, keeping you alive. Seeing your parents grow older and seeing them aging is a tough experience. And my mom often tells me whenever she would see her parents, after a while, in her mind, she still sees her parents as when they were their younger selves, when she was younger. But then suddenly it would hit her that they're, like, much older and that also makes you feel a little bit more aware of how you are aging and how much older you are. But at the end of the day, they're always going to be your parents. Mikkael Sekeres: They really are. Our parents age and we age with them, and we evolve in how we view parents, and we all go through this, and I don't think it ever ends until your parents pass. I'm sure you're familiar with this. There's a saying that you never really become an adult until your parents pass. Christopher Kim: You mentioned that you're more aware of what parenthood is as you get older. I mean, obviously I don't have any kids myself, but I'm sure my parents always USED say to me, you know, "You'll understand when you have kids." Mikkael Sekeres: You sort of do. You sort of do. Christopher Kim: I sort of do. Right, exactly. Mikkael Sekeres: My dad always said to me that parenting is unskilled labor. So you sort of get it when you're a parent, you're still really figuring it out. Christopher Kim: Absolutely. Yeah. And the older I get, it's like I realize. I think I've gained more appreciation for the sacrifices my parents have made for me, and I've definitely taken their parenthood lessons to heart for whenever, if I choose to have kids later on. Mikkael Sekeres: So that's great. I'm sure they'd be thrilled to hear that, Chris. I wanted to end with one last question for you. Are there poets who've been a particular influence on you or favorite poets you want to name? Christopher Kim: One name that kind of comes to mind is there's a poet named Ocean Vuong. Their work blends together personal history and like, family history with beautiful lyricism. They always feel like musical in a way. Their words kind of often linger on with you long after. Mikkael Sekeres: That's great. Well, listen, Chris Kim, I'd like to thank you so much for joining us on today's podcast and for your absolutely beautiful poem, "The First Hero." Christopher Kim: Thank you so much for having me. I'm super thrilled to be on. This is my first podcast ever, so it was such a great experience. I felt so welcomed. So thank you for, you know, hearing my thoughts or listening to my thoughts. I appreciate it. Mikkael Sekeres: Well, you're good at them. Keep them up. Until next time. Thank you for listening to JCO's Cancer Stories: The art of Oncology. Don't forget to give us a rating or review and be sure to subscribe so you never miss an episode. You can find all of the ASCO shows at asco.org/podcasts. Until next time. Thanks so much for joining us. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity or therapy should not be construed as an ASCO endorsement. Like, share and subscribe so you never miss an episode and leave a rating or review. Guest Bio: Christopher Kim is a research assistant at the Institute for Stem Cell Biology and Regenerative Medicine at Stanford University.

Listen to ASCO's Journal of Clinical Oncology Art of Oncology article, "I Hope So Too" by Dr. Richard Leiter from Dana-Farber Cancer Institute. The article is followed by an interview with Leiter and host Dr. Mikkael Sekeres. Leiter shares that even in the most difficult moments, clinicians can find space to hope with patients and their families. TRANSCRIPT Narrator: I Hope So Too, by Richard E. Leiter, MD, MA "You're always the negative one," Carlos' mother said through our hospital's Spanish interpreter. "You want him to die." Carlos was 21 years old. A few years earlier he had been diagnosed with AML and had undergone an allogeneic bone marrow transplant. He was cured. But now, he lay in our hospital's bone marrow transplant (BMT) unit, his body attacked by the very treatment that had given him a new life. He had disseminated graft-versus-host disease (GVHD) in his liver, his lungs, his gut, and, most markedly, his skin. The BMT team had consulted us to help with Carlos' pain. GVHD skin lesions covered his body. They were raw and weeping. Although the consult was ostensibly for pain, the subtext could not have been clearer. Carlos was dying, and the primary team needed help navigating the situation. As his liver and kidney function declined, the need to address goals of care with Carlos' mother felt like it was growing more urgent by the hour. Difficult cases, like a young person dying, transform an inpatient unit. Rather than the usual hum of nurses, patient care associates, pharmacy technicians, and unit managers going about their daily work, the floor becomes enveloped in tension. Daily rhythms jump a half step ahead of the beat; conversations among close colleagues fall out of tune. "Thank goodness you're here," nurse after nurse told my attending and me, the weight of Carlos' case hanging from their shoulders and tugging at the already puffy skin below their eyes. I was a newly minted palliative care fellow, just over a month into my training. I was developing quickly, but as can happen with too many of us, my confidence sat a few steps beyond my skills. I thought I had a firm grasp of palliative care communication skills and was eager to use them. I asked for feedback from my attendings and genuinely worked to incorporate it into my practice. At the same time, I silently bristled when they took charge of a conversation in a patient's room. Over the ensuing week, my attending and I leaned in. We spent hours at Carlos' bedside. If I squinted, I could have convinced myself that Carlos' pain was better. Every day, however, felt worse. We were not making any progress with Carlos' mother, who mostly sat silently in a corner of his room. Aside from occasionally moaning, Carlos did not speak. We learned little, if anything, about him as a person, what he enjoyed, what he feared. We treated him, and we barely knew him. Each morning, I would dutifully update my attending about the overnight events. "Creatinine is up. Bili is up." She would shake her head in sadness. "Doesn't she get that he's dying?" one of the nurses asked us. "I feel like I'm torturing him. He's jaundiced and going into renal failure. I'm worried we're going to need to send him to the ICU. But even that won't help him. Doesn't she understand?" We convened a family meeting. It was a gorgeous August afternoon, but the old BMT unit had no windows. We sat in a cramped, dark gray family meeting room. Huddled beside Carlos' mother was everyone on the care team including the BMT attending, nurse, social worker, chaplain, and Spanish interpreter. We explained that his kidneys and liver were failing and that we worried time was short. Carlos' mother had heard it all before, from his clinicians on rounds every day, from the nursing staff tenderly caring for him at his bedside, and from us. "He's going to get better," she told us. "I don't understand why this is happening to him. He's going to recover. He was cured of his leukemia. I have hope that his kidneys and liver are going to get better." "I hope they get better," I told her. I should have stopped there. Instead, in my eagerness to show my attending, and myself, I could navigate the conversation on my own, I mistakenly kept going. "But none of us think they will." It was after this comment that she looked me right in the eyes and told me I wanted Carlos to die. I knew, even then, that she was right. In that moment, I did want Carlos to die. I could not sit with all the suffering—his, his mother's, and his care team's. I needed her to adopt our narrative—that we had done all we could to help Carlos live, and now, we would do all we could to help him die comfortably. I needed his mother to tell me she understood, to accept what was going on. I failed to recognize what now seems so clear. Of course, his mother understood what was happening. She saw it. But how could we have asked her to accept what is fundamentally unacceptable? To comprehend the incomprehensible? At its best, serious illness communication not only empathetically shares news, be it good or bad, but also allows patients and families adequate time to adjust to it. For some, this adjustment happens quickly, and in a single conversation, they can digest difficult news and move to planning the next steps in care for themselves or their loved ones. For most, they need more time to process, and we are able to advance the discussion over the course of multiple visits. My attending led the conversations from then on. She worked with the BMT attending, and they compassionately kept Carlos out of the intensive care unit. He died a few days later, late in the evening. I never saw his mother again. I could not have prevented Carlos' death. None of us could have. None of us could have spared his mother from the grief that will stay with her for the rest of her life. Over those days, though, I could have made things just a little bit less difficult for her. I could have protected her from the overcommunication that plagues our inpatient units when patients and families make decisions different from those we would make for ourselves and our loved ones. I could have acted as her guide rather than as her cross-examiner. I could have hoped that Carlos stopped suffering and, genuinely, hoped he got better although I knew it was next to impossible. Because hope is a generous collaborator, it can coexist with rising creatinines, failing livers, and fears about intubation. Even in our most difficult moments as clinicians, we can find space to hope with our patients, if we look for it. Now—years later, when I talk to a terrified, grieving family member, I recall Carlos' mother's eyes piercing mine. When they tell me they hope their loved one gets better, I know how to respond. "I hope so too." And I do. Dr. Mikkael Sekeres: Hello and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the oncology field. I'm your host, Mikkael Sekeres. I'm professor of Medicine and Chief of the Division of Hematology at the Sylvester Comprehensive Cancer Center at University of Miami. Today I am thrilled to be joined by Dr. Ricky Leiter from the Dana-Farber Cancer Institute. In this episode, we will be discussing his Art of Oncology article, "I Hope So, Too." Our guest's disclosures will be linked in the transcript. Ricky, welcome to our podcast and thank you so much for joining us. Dr. Ricky Leiter: Thanks so much for having me. I'm really excited to be here. Dr. Mikkael Sekeres: Ricky, I absolutely adored your essay. It really explored, I think, a combination of the vulnerability we have when we're trying to take care of a patient who's dying and the interesting badlands we're placed in when we're also a trainee and aren't quite sure of our own skills and how to approach difficult situations. But before we dive into the meat of this, can you tell us a little bit about yourself? Where are you from and where did you do your training? Dr. Ricky Leiter: Sure, yeah. Thanks so much. So I grew up in Toronto, Canada, and then moved down to the States for college. I was actually a history major, so I never thought I was going to go into medicine. And long story short, here I am. I did a Post-Bac, did a year of research, and ended up at Northwestern Feinberg School of Medicine for med school, where I did a joint degree in medical humanities and bioethics. And that really shaped my path towards palliative care because I found this field where I said, "You know, wow, I can use these skills I'm learning in my Master's at the bedside with patients thinking about life and death and serious illness and what does that all mean in the broader context of society." So, moved from Chicago to New York for residency, where I did residency and chief residency in internal medicine at New York Presbyterian Cornell, and then came up to the Harvard Interprofessional Palliative Care Program, where I did a clinical fellowship, then a research fellowship with Dana-Farber, and have been on faculty here since. Dr. Mikkael Sekeres: Fantastic. Any thoughts about moving back to Canada? Dr. Ricky Leiter: We talk about it every now and then. I'm really happy here. My family's really happy here. We love life in Boston, so we're certainly here for the time being. Definitely. Dr. Mikkael Sekeres: And the weather's so similar. Dr. Ricky Leiter: Yeah, I'm used to the cold. Dr. Mikkael Sekeres: I apparently did not move to Miami. I'm curious, this may be an unfair question, as you have a really broad background in humanities and ethics. Are there one or two books that you read where you think, "Gee, I'm still applying these principles," or, "This really still resonates with me in my day to day care of patients who have cancer diagnosis"? Dr. Ricky Leiter: Oh, wow, that is a great question. There are probably too many to list. I think one is When Breath Becomes Air by Paul Kalanithi, which I didn't read in my training, I read afterwards. And I think he's such a beautiful writer. The story is so poignant, and I just think Paul Kalanithi's insights into what it means to be living with a serious illness and then ultimately dying from cancer as a young man, as someone in medicine, has really left an imprint on me. Also, Arthur Kleinman. The Illness Narratives, I think, is such a big one, too. And similarly, Arthur Frank's work. I mean, just thinking about narrative and patient stories and how that impacts our clinical care, and also us as clinicians. Dr. Mikkael Sekeres: And I suspect us as writers also. Dr. Ricky Leiter: Absolutely. Dr. Mikkael Sekeres: We imprint on the books that were influential to us. Dr. Ricky Leiter: Certainly. Dr. Mikkael Sekeres: So how about your story as a writer? How long have you been writing narrative pieces? Is this something you came to later in your career, or did you catch the bug early as an undergrad or even younger? Dr. Ricky Leiter: So I caught it early, and then it went dormant for a little while and came back. As a history major, as someone who is humanities minded, I loved writing my papers in college. Like, I was one of those nerds who got, like, really, really excited about the history term paper I was writing. You know, it was difficult, but I was doing it, particularly at the last minute. But I really loved the writing process. Going through my medical training, I didn't have as much time as I wanted, and so writing was sort of on the back burner. And then actually in my research fellowship, we had a writing seminar, our department, and one of the sessions was on writing Op-eds and perspective pieces. And we had a free write session and I wrote something sort of related to my research at the time I was thinking about, and Joanne Wolfe, who was helping to lead the session, pediatric palliative care physician, she said, "You know, this is really great. Like, where are you going to publish this?" And I said, "Joanne, what do you mean? I just wrote this in this session as an exercise." She said, "No, you should publish this." And I did. And then the bug came right back and I thought, "Wow, this is something that I really enjoy and I can actually make a difference with it. You know, getting a message out, allowing people to think a little bit differently or more deeply about clinical cases, both in the lay press and in medical publications.: So I've essentially been doing it since and it's become a larger and larger part of my career. Dr. Mikkael Sekeres: That's absolutely wonderful, Ricky. Where is it that you publish then, outside of Art of Oncology? Dr. Ricky Leiter: So I've had a couple of pieces in the New York Times, which was really exciting. Some in STAT News on their opinion section called First Opinion, and had a few pieces in the New England Journal as well, and in the Palliative Care Literature, the Journal of Palliative Medicine. Dr. Mikkael Sekeres: Outstanding. And about palliative care issues and end of life issues, I assume? Dr. Ricky Leiter: Sort of all of the above. Palliative care, serious illness, being in medical training, I wrote a fair bit about what it was like to be on the front lines of the pandemic. Dr. Mikkael Sekeres: Yeah, that was a traumatic period of time, I think, for a lot of us. Dr. Ricky Leiter: Absolutely. Dr. Mikkael Sekeres: I'm curious about your writing process. What triggers a story and how do you face the dreaded blank page? Dr. Ricky Leiter: So it's hard to pin down exactly what triggers a story for me. I think sometimes I'm in a room and for whatever reason, there's a moment in the room and I say, "You know what? There's a story here. There's something about what's going on right now that I want to write." And oftentimes I don't know what it is until I start writing. Maybe it's a moment or a scene and I start writing like, "What am I trying to say here? What's the message? And sometimes there isn't a deeper message. The story itself is so poignant or beautiful that I want to tell that story. Other times it's using that story. And the way I think about my writing is using small moments to ask bigger questions in medicine. So, like, what does it mean to have a good death? You know, one piece I wrote was I was thinking about that as I struggled to give someone what I hoped would be a good death, that I was thinking more broadly, what does this mean as we're thinking about the concept of a good death? Another piece I wrote was about a patient I cared for doing kidney palliative care. And she was such a character. We adored her so much and she was challenging and she would admit that. This was someone I wanted to write about. And I talked to her about it and she was honored to have her story told. Unfortunately, it came out shortly after her death. But she was such a vibrant personality. I said, "There's something here that I want to write about." In terms of the blank page, I think it's overcoming that fear of writing and procrastination and all of that. I think I have a specific writing playlist that I put on that helps me, that I've listened to so many times. You know, no words, but I know the music and it really helps me get in the zone. And then I start writing. And I think it's one of those things where sometimes I'm like, "Oh, I really don't like how this is sounding, but I'm going to push through anyways." as Anne Lamott's blank first draft, just to get something out there and then I can play with it and work with it. Dr. Mikkael Sekeres: Great. I love the association you have with music and getting those creative juices flowing and picking 'le mot juste' in getting things down on a page. It's also fascinating how we sometimes forget the true privilege that we have as healthcare providers in the people we meet, the cross section of humanity and the personalities who can trigger these wonderful stories. Dr. Ricky Leiter: Absolutely. Absolutely. It's such a privilege and I think it often will go in unexpected directions and can really impact, for me certainly, my practice of medicine and how I approach the next patients or even patients years down the road. You remember those patients and those stories. Dr. Mikkael Sekeres: Right. You write with such obvious love and respect for your patients. You also write about that tenuous phase of our careers when we're not yet attendings but have finished residency and have demonstrated a modicum of competence. You know, I used to say that fellowship is really the worst of all worlds, right? As an attending, you have responsibility, but you don't have to do as much of the grunt work. As a resident, you do the grunt work, but you don't really have the responsibility. And in fellowship, you've got it all. You've got to do the grunt work, and you have the responsibility. Can you tie those two concepts together, though? How does our relationship to our patients change over the course of our careers? Dr. Ricky Leiter: Early on, if you think about the imprinting of patients as you go down the road, so many of the patients who have imprinted on me were the ones earlier in my career, before I was more formed as a clinician because of experiences like the one I wrote about in "I Hope so Too," where the skills are forming, and sometimes where it's smooth sailing, and sometimes we're muddling through. And those cases where we feel like we're muddling through or things don't go as we hope, those are the ones that really leave an impact. And I think it's those little moments that sort of nudge your career and your skill set in different ways. I think the patients now, they still leave a mark on me, but I think it's in different ways. And I think oftentimes it's less about my skills. Although my skills are still very much developing, even, you know, almost a decade out, they impact me differently than they once did. I feel more confident in what I'm doing, and it's more about my relationship to this situation rather than the situation's impact on my skills. Dr. Mikkael Sekeres: Got it. Got it. It's interesting. I once wrote a piece with Tim Gilligan, who also spent some time at Dana Farber and is a communications expert, about how there's this kind of dualism in how we're trained. We're trained with communications courses and how to talk to patients, and it almost does the opposite. It kind of raises the flag that, "Wait a second, maybe I've been talking to people the wrong way." And as you get more mature in your career, I almost feel as if you revert back to the way you were before medical school, when you just talked to people like they were people and didn't have a special voice for patients. Dr. Ricky Leiter: Yeah, I think that's right. And I think in palliative care, we spend so much time thinking about the communication. And this was the most challenging piece about fellowship because then- and our fellowship directors told this to us, and now we teach it to our fellows. You know that you come in, the people who choose to go into palliative care, have a love of communication, have some degree of skill coming in, and then what happens is we break those skills down and teach them a new skill set. So it gets clunkier before it gets better. And the time I was writing about in this piece was August of my fellowship year, exactly when that process was happening, where I'm trying to incorporate the new skills, I had my old way of doing things, and it's just not always aligning. And I think you're right that as the skills become embedded, as you go on throughout your career, where it feels much more natural, and then you do really connect with people as people still using the skills and the techniques that we've learned in our communication courses, but they become part of who you are as a clinician. Dr. Mikkael Sekeres: Nicely put. Your story is particularly poignant because the patient you described was dying from the very treatment that cured his leukemia. It's this, I'm going to use the term badlands again. It's this terrible badlands we sometimes find ourselves where, yes, the treatment has been successful, but at the cost of a human life. Do you think that as healthcare providers, we react differently when a patient is sick, from side effects to our recommendations, as opposed to sick from their disease? Dr. Ricky Leiter: I think we probably do. It's hard because I think every patient in every case pulls at us in different directions. And this case was Carlos, who I called him, it was such a challenging situation for so many reasons. He was young. He really couldn't communicate with us. We were talking to his mom. Like, there were so many layers to this. But I think you're right. that underlying this, there's a sense of "We did everything we could beautifully, to cure him of his disease, and now he's dying of that, and what does that mean for us as clinicians, physicians. That becomes really hard and hard to sit with and hold as we're going back every day. And I say that as the palliative care consultant. So I can only imagine for the oncology team caring for him, who had taken him through this, what that felt like. Dr. Mikkael Sekeres: Well, you describe, again, beautifully in the piece, how the nursing staff would approach you and were so relieved that you were there. And it was, you know, you got the sense- I mean, obviously, it's tragic because it's a young person who died, but you almost got the sense there was this guilt among the providers, right? Not only is it a young person dying, but dying from graft versus host disease, not from leukemia. Dr. Ricky Leiter: Absolutely. There was guilt because of what he was dying of, because of how he was dying that he was so uncomfortable and it took us so long to get his pain under control and we really couldn't get him that balance of pain control and alertness that we always strive for was pretty much impossible from the beginning. And so it was layer upon layer of distress and guilt and sadness and grief that we could just feel every day as we stepped onto the floor. Dr. Mikkael Sekeres: Yeah. I don't know if you've ever read- there's a biography of Henry Kaplan, who was considered the father of radiation therapy, where there was this incredible moment during his career when he presented at the AACR Annual Meeting the first cures for cancers, right? No one believed it. It was amazing, actually curing cancer. And then a couple years later, people started dribbling into his clinic with cancers because of the radiation therapy he gave, and he actually went into a clinical depression as a result of it. So it can affect providers at such a deep level. And I think there's this undiscussed guilt that permeates the staff when that happens. Dr. Ricky Leiter: Absolutely, absolutely. It's right there under the surface. And we rarely give ourselves the space to talk about it, right? To really sit down and say, how are we approaching this situation? How do we feel about it? And to sit with each other and acknowledge that this is horrible. It's a horrible situation. And we feel guilty and we feel sad and we feel grief about this. Dr. Mikkael Sekeres: It's been just terrific getting to know you and to read your piece, Ricky Leiternd, a we really appreciate your writing. Keep doing what you do. Dr. Ricky Leiter: Oh, thank you so much. It's a privilege to get the piece out there and particularly in JCO and to be here with you. So I really appreciate it. Dr. Mikkael Sekeres: Until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review and be sure to subscribe so you never miss an episode. You can find all of ASCO's shows at asco.org/podcasts. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Like, share and subscribe so you never miss an episode and leave a rating or review. Guest Bio: Dr. Ricky Leiter is from the Dana-Farber Cancer Institute.

Listen to ASCO's Journal of Clinical Oncology Art of Oncology article, "You Don't Bring Me Flowers" by Dr. Kathryn Cappell, who is an Assistant Research Physician at the National Cancer Institute. The article is followed by an interview with Cappell and host Dr. Mikkael Sekeres. Dr Cappell shares the difficulty in protecting oncology patients without taking away things that bring them joy. TRANSCRIPT Narrator: You Don't Bring Me Flowers, by Kathryn Cappell, MD, PhD Easter morning dawned a beautiful spring day in Washington, DC. Soft sunlight and a cool breeze streamed through my bedroom window. My children woke up early, and I listened to their shouts of delight as they found their baskets, brimming with grass and chocolate eggs wrapped in pink and purple foil. Later that morning, I drove to a local hospital where I was rounding. Cherry blossom trees bursting with pink flowers bloomed throughout our peaceful neighborhood, and their showers of pollen had coated my car windows in a soft dusting of green. I put my arm out the car window and caught the heavy scent of flowers as fresh air flooded in. The fifth patient on my rounds, Evelyn, had been in the hospital for 22 days. This morning, as the charge nurse, Frances, and I entered the room, I noticed a vase brimming full of bright pink flowers beside her bed. Evelyn caught my eye and looked guiltily at her lovely bouquet. "I know it's against the rules," she said, "but my son brought them, and they make me so happy." Fresh flowers were indeed against ward policy. Theoretically, flowers could introduce fungal spores that could float through the air and lodge into the vulnerable lungs of our neutropenic patients. Evelyn was not the only patient who had received flowers. On that Easter day, the elevator area outside the oncology ward bloomed with forbidden flowers mistakenly brought by other loving sons. Frances kindly offered to take a picture of the flowers for Evelyn and print it out. Frances explained that this way she could still enjoy the picture while protecting herself and other patients on our ward. I found myself unsure; I wanted Evelyn to have the joy of the flowers during her long hospitalization. I could picture her son, a lumbering man in his 60s, carefully selecting the flowers last night. He was a quiet man, and I got the impression that bringing flowers was a way for him to share his feelings about his mother. Evelyn had been separated from her family for almost a month and was isolated in a hospital room without the ability to even open a window to enjoy a fresh breeze. She had maintained her gentle and positive attitude throughout, bravely battling complications from chemotherapy. The flowers probably brought her a little chance to savor the beauty of Spring and reflect on the love from her son. I did not want to take that from her. Still, I knew the importance of ward policies and protecting our vulnerable patients. I dislike taking things from my patients, but I have been diligently doing so for most of my career. As a medical student and resident, I remember oncology patients struggling to tolerate a neutropenic diet devoid of many fresh fruits and vegetables. A generation of doctors advised patients that the neutropenic diet was necessary to protect them from infections. I recall one young boy with leukemia repeatedly asking for fresh blueberries and the medical team insisting he follow the neutropenic diet. He eventually got sicker and died; I am not sure if he ever got a blueberry. I think of him with a lingering tension that we did him wrong by taking away something that could have brought him joy before he died. This is particularly true because the neutropenic diet has now been largely debunked.1 The modern oncology patient enjoys the blueberries that only 20 years ago we would have assiduously removed from the room. Like the neutropenic diet, there is little evidence that fresh flowers pose a significant infection risk. Fungal spores could theoretically also come into the ward on fresh fruits and the dusttracked in on employee shoes, yet we ban neither of these. The CDC hospital infection control recommendations note that there are minimal evidence-based studies in this area but cautiously recommend against flowers in areas where immunosuppressed patients are located. The lack of evidence is reflected in varying hospital policies regarding flowers; some major medical centers ban flowers on the oncology ward and others do not. I stood before Evelyn with her pink flowers, as she implored me to overrule the policy and allow her to keep them. Bright sunlight shone in through her window and the room felt stuffy and closed, in stark contrast to the lovely outdoor scene. The flowers did add a hint of beauty to an otherwise sterile-appearing room. The vase that held these was clean and the water crystal clear. If we tested the flowers and water, would it be brimming with fungus that would subsequently endanger Evelyn and others on the ward? Who knew? In the absence of evidence, I followed the rules. Evelyn's face fell as I concurred with Frances that it was ward policy to not allow flowers in the room. She was too polite to argue, and though she looked disappointed, her demeanor toward Frances and me did not change. Frances took a picture of the flowers and brought the picture back to Evelyn. The flowers were carefully moved to the oncology elevator lobby. I finished my rounds, put in orders, wrote my notes, and went home to my children. The afternoon was as lovely as when I went into work that morning. My kids rushed at me as I got out of the car, eager for a promised afternoon Easter Egg hunt. My son climbed on the apricot tree in front of our house, and little flower petals fell to the ground as the branches shook from his weight. He was still at an age where he would often pick dandelions in the yard and tuck these carefully behind my ear. It is his simple way of expressing love and it makes me feel cherished. I pictured him, a grown man, bringing flowers to me in the hospital someday, and how painful it might be to have those taken away. I could not quite shake the feeling I had made the wrong decision. I mentally reassured myself that it was hospital policy to take away Evelyn's flowers, and after all, it was for her own protection. Was it not? Dr. Mikkael Sekeres: Hello and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the oncology field. I'm your host, Mikkael Sekeres. I'm Professor of Medicine and Chief of the Division of Hematology at the Sylvester Comprehensive Cancer Center, University of Miami. Today, we're joined by Dr. Katy Cappell, Assistant Research Physician at the National Cancer Institute. In this episode, we will be discussing her Art of Oncology article, "You Don't Bring Me Flowers." At the time of this recording, our guest has no disclosures. Katy, welcome to our podcast and thank you so much for joining us. Dr. Kathryn Cappell: Thank you. Dr. Mikkael Sekeres: It's such a delight to have you here. Can you just start by giving us a little bit of your background? Dr. Kathryn Cappell: I've been practicing mainly in hematologic malignancies, and at the time of the writing of this article, I was an Assistant Research Physician at the National Cancer Institute. Before that, I trained at University of Miami, actually, where you work, for my bachelor's. Then I went to University of North Carolina for an M.D. Ph.D., and then I was at Stanford for my residency, followed by NCI for my fellowship. Dr. Mikkael Sekeres: That's great. I didn't know about your University of Miami connection. I feel like I have to throw up a U to you on our video recording here. Dr. Kathryn Cappell: Yes. Your screen looks very recognizable from my undergrad. Dr. Mikkael Sekeres: Well, it's great to be reunited then with you. I was wondering if I could ask you to talk a little bit about your writing process. When did you start writing and when do you find the time to write? Dr. Kathryn Cappell: Yeah. So this is actually my first story that I've written in a long time, probably in 20 years. Dr. Mikkael Sekeres: Wow. Dr. Kathryn Cappell: I started writing this story because when I was rounding at this hospital, I always noticed the flowers being absent in rooms. And I liked to chart my notes at the nurse's station where a lot of patients would come and check in. And when they were checking in, I'd often hear people getting their flowers taken away and moved to the lobby. So I've been thinking about the piece for a long time, just from rounding and while I was listening to all these conversations about patients losing their flowers. So that's where it came from. And it's my first piece. Dr. Mikkael Sekeres: That's really amazing. It's a phenomenon we witness all the time when people with all of the best intentions bring things into patients who are in the hospital for three or four weeks, like those patients who are getting treatment for acute leukemia or those who are undergoing a transplant to try to make their room more recognizable and more homelike for them. And then we often see those things whisked away because of hospital policies. Dr. Kathryn Cappell: Yeah, definitely. Dr. Mikkael Sekeres: When you're writing, does an essay all come out at once or do you revisit it? So how do you refine your writing to transform it into a work of art? Dr. Kathryn Cappell: This piece, I started writing, probably, actually a year ago. It took me a long time to get started, to the point where I was thinking about it for a long time, thinking about the piece, for almost a year. I can remember that because I started thinking about it at ASH 2023, and I hadn't really finished it till ASH 2024. And during that time, a lot was going on in my head about how I would structure the piece. And then once I had started writing it, I went through multiple revisions before I got the courage to submit one to JCO. Dr. Mikkael Sekeres: I love how you frame it in terms of the courage to submit to JCO. I just read a post from Adam Grant, who's an economist and writes about kind of our actions in the workplace, and he mentioned the point that we often will put something off out of fear. It's not some kind of deliberate action on our part to avoid doing something that we don't want to do. It's really fear and fear of failure and fear of anxiety that prevents us from doing something. So you talk about courage. I think the flip side of courage is fear. Describe what that's like, that first moment that you decide, "Okay, I'm going to write a piece, and I want to write something that's public, that other people will see." Dr. Kathryn Cappell: Yeah. I think most people, when they write, it's a very personal thing to share something that you've written, especially if you've been thinking about it in your mind for quite a long time. That's actually part of the reason I don't write very often is because of that. And I think you're right that it comes from fear of sharing it. So I started out by, I was just going to write this for myself. And then as I got more comfortable with it over time, I decided, "Well, I might as well share this piece to see what happens." Dr. Mikkael Sekeres: Did you bounce the idea off of friends or colleagues to kind of see what their reaction would be before you kept taking those steps that eventually led to a completed piece and submitting it to JCO? Dr. Kathryn Cappell: Yes, I did bounce it off a friend who had the same experience in the same hospital with flowers getting taken away from patients. So I checked to see if other people had had the kind of same reaction to it as I had. Dr. Mikkael Sekeres: That's great. It's always helpful to have a cadre of supportive readers when you first start writing - people who are going to talk about what's great about your piece and then give you advice that you can trust that's more helpful in revising it. Dr. Kathryn Cappell: Yes. Dr. Mikkael Sekeres: I love how in this piece you explore the tension we face as hematologist-oncologists between recommending what we feel is medically appropriate for our patients and feeling as if we've taken away some of their agency and some of their liberty. Can you discuss this in a little more detail? Dr. Kathryn Cappell: You'd think that the hardest thing about being a hematologist-oncologist would be knowing all the drugs and knowing what you should do, but I think that that's actually one of the easier parts. The harder part is these kind of interactions that arise because I think they have an emotional component to them and that makes it harder to do, day in and day out, dealing with those things. I mean, I think hospital policies are important and they're there to protect people. So I think, in the end of the story, I did do what the hospital policy said to do. And I think that that's in some ways important to make sure we have a good environment for everybody on the ward. But I think it's really painful as a doctor to have to make those decisions where it impacts someone's agency and someone's joy and what they're getting out of a day to day life, especially when they're in the hospital for a really long time. Dr. Mikkael Sekeres: Was there something that you could do to make up for it? So sometimes we'll take something away like beautiful flowers for fear of introducing infection in a ward where people are immunocompromised. But we can make up for it by saying, "Okay, but we're okay with you bringing food in from the outside." Dr. Kathryn Cappell: Yeah. So the nurse in the story, I mean, she definitely was trying to make up for it. She was a very sweet nurse with helping me. She went and printed out the picture of the flowers, which I think is one thing you can do, but another thing I've seen a lot of patients do and family members do is bring in paper flowers. They decorate the room in other ways, which I think makes it meaningful and still nice for people. And I think the nurses on our ward did a great job doing that too. They decorate the rooms and try to still keep a very nice environment. Dr. Mikkael Sekeres: That's terrific. What other things do family members do to try to make the room more of a home environment? Dr. Kathryn Cappell: Bringing in their own blankets for people so they have their own comforter on the bed is a big one. Bringing in pictures of family members, putting them on the walls, on the windows. Bringing in food from home I think is very important. Dr. Mikkael Sekeres: I completely agree. And there was a recent study looking at neutropenic precautions in a transplant unit and whether or not those actually improved the outcome of patients, and it turns out it didn't. So we've had these incredibly restrictive diets for patients that I think we can feel much more comfortable now relaxing and allowing people their comfort foods, which you, as a University of Miami graduate know, here involves a lot of Cuban food. Dr. Kathryn Cappell: Yeah, definitely. But I think that that neutrophenic diet is a great parallel to that. We start instituting things that kind of take away people's agency in something that brings them joy, but we might not have that great of evidence for it. And it really does impact people's happiness, I think, in a lot of ways and comfort in the hospital. Dr. Mikkael Sekeres: Yeah. And that's so important for getting through this ordeal of being in the hospital sometimes for weeks. You start and end the essay writing about your family, and this beautifully illustrates the freedom that they and you have compared to your patients who are confined to the hospital on a lovely holiday weekend. How do you navigate what must feel almost like survivor's guilt of being free from the hospital when others aren't, and being able to shift your focus to the joy of being around your children enjoying their holiday. Dr. Kathryn Cappell: Yeah, I think children help you focus it themselves. When I come home, they're pretty focused on what they want. They want their Easter egg hunt in the morning. They need their Easter baskets. So that alone brings you back into a different world. I come back, and suddenly I'm thinking about where the Easter eggs are going to go. That helps me a lot doing that. But I also think most people in oncology, most onc physicians, it is a difficult separation. You do think about your patients outside of work hours. That is something that's hard to do. But I'd say my children actually help me with that, getting my mind onto something different because they're just so active and they have so much going all the time. Dr. Mikkael Sekeres: It's interesting how you frame that also, how your children help you. I remember distinctly one time my daughter asked me, "How was work?" And I said, "Oh, it was a hard day because I had to tell somebody some bad news." And she very deliberately said to me, "You need to separate what you tell us at home from what happens at work. We don't want to hear your sad stories." Dr. Kathryn Cappell: Oh, that's a sad story in itself. Dr. Mikkael Sekeres: Well, it is, right? But it was kind of very helpful to me to realize that, yes, we do have to- we have to compartmentalize, not only for our own health, but also for the health of our family. We've chosen this path in our lives, which is this incredible opportunity to be around people who have a cancer diagnosis at a pivotal point in their lives. But our family hasn't necessarily made that same choice. Dr. Kathryn Cappell: The children don't understand it 100%. Dr. Mikkael Sekeres: Do you feel as if hematologists-oncologists are better at compartmentalizing maybe than other professionals in medicine? Dr. Kathryn Cappell: I'm not sure. I feel like a lot of medicine has those sad points that are difficult. So I think psychiatry is a good example of that. That's hard to, I think probably, very difficult to compartmentalize. So I'm not sure. I think other physicians also have difficulties with it. But I do think we see a lot of difficult scenarios more than other groups. So that could make it that we're better at compartmentalizing. Dr. Mikkael Sekeres: You mentioned in your essay, you refer to your patient's lumbering son. I love that phrase, the lumbering son who brings her the flowers. Do you think it helps to see that backstory to what's going on in your patients' lives? There's a risk of almost too much empathy, of knowing too much about it, and therefore having an even more difficult time separating yourself. Dr. Kathryn Cappell: For me, I think it helps with patient care a lot to know their family so you know where they're going back when they leave the hospital. You kind of know what helps, you know what they value. So I think in a lot of ways it does help for patient care to know what they're coming from in terms of family members. I do think sometimes getting too involved and knowing too much about the situation and attaching to it emotionally can make it hard to be objective. So I think that it's important to keep some distance there in terms of being able to make good decisions for your patients as well. Dr. Mikkael Sekeres: You mention looking at people's rooms and seeing the photos up on the wall. I always think we worry about the patients most who don't have any photos up on the wall and what kind of support system they're going back to when they're discharged from the hospital. Dr. Kathryn Cappell: Yeah, I definitely agree. That's definitely something I think about as well. Dr. Mikkael Sekeres: You end this beautiful essay by asking the question, and I'm quoting you now, "I couldn't quite shake the feeling I'd made the wrong decision. I mentally reassured myself that it was hospital policy to take away Evelyn's flowers. And after all, it was for her own protection, wasn't it?" And I'm wondering, I'm going to put you on the spot a little bit, Katy, can you answer your own question? Dr. Kathryn Cappell: Boy, I'm not sure if I can still. I think that's part of where the tension in the piece arises from. I think when you're in a hospital, you're working as a team, and part of the thing I think about is nurses are an important part of that team and they structure the ward. So I don't think it's just my decision. I think it's a hospital decision as a team. And I do think there's a component of fairness. If you're going to say it to one patient, that's the policy, it should be the policy to all patients. So in some ways I reassure myself about that. But in the other side of me, it still makes me a little sad. Dr. Mikkael Sekeres: Yeah, it's well stated. I'm wondering that the hospital in which you work changed their policy or did your previous position change their policy? Dr. Kathryn Cappell: I haven't actually mentioned this story to them yet or asked them to change their policy. I do feel it's pretty common at the different hospitals. I've worked at seeing a policy similar to this, so I haven't asked. Dr. Mikkael Sekeres: Well, Katy, I want to thank you for joining us today on the podcast. Your writing is elegant, the tale that you tell resonates with all of us, and it's been just delightful getting to know you even better. Dr. Kathryn Cappell: Great to meet you as well. Thank you for having me on. Dr. Mikkael Sekeres: Until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review, and be sure to subscribe so you never miss an episode. You can find all of ASCO's shows at asco.org/podcasts. Thank you again. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Like, share and subscribe so you never miss an episode and leave a rating or review. Guest Bio: Dr. Kathryn Cappell is Assistant Research Physician at the National Cancer Institute.

We say thank you to current Cancer Stories host, Dr. Lidia Schapira, and welcome Cancer Stories new host, Dr. Mikkael Sekeres. TRANSCRIPT Dr. Lidia Schapira: Hello and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, a Professor of Medicine at Stanford University, and with me today is Dr. Mikkael Sekeres, who is a Professor of Medicine and the Chief of the Division of Hematology at the Sylvester Comprehensive Cancer Center in Miami. In this episode, we will be discussing his new role as the host for the JCO Cancer Stories: The Art of Oncology podcast. Mikkael, welcome to our podcast and thank you for joining me today. Dr. Mikkael Sekeres: Lidia, what an absolute delight it is to be here with you. And I have to confess, it's also intimidating to think about taking this over from you, given the amazing job you've done over the past few years. Dr. Lidia Schapira: Well, thank you so much for that. This podcast originated as a bit of a dare. When Steve Cannistra, back in 2017, said 'no' to some idea that I had for changing or expanding the section and issued the dare of why don't you do a podcast instead? And back in 2017, I had no idea. And we were less used to podcasts, so I trained myself. And then this beautiful new form sort of emerged just from my idea and dream of giving our listeners and our readers something new to chew on and to reflect on. Dr. Mikkael Sekeres: Well, it turned out to be prescient, didn't it? I can't tell you how many people I know, especially here in Miami, where we do tend to get caught in traffic and have a long commute time. I'm sure that never happens to you in Palo Alto. Dr. Lidia Schapira: Of course not. Dr. Mikkael Sekeres: But people listen to a lot of podcasts and it's a great way to catch up on personalities and on books and on the news. So good for you. I'm so happy you took the dare and ran with it. Dr. Lidia Schapira: Yes. And the first thought I had was to make it a bit artsy. So we started, for the first couple of years of rounding up everybody we knew who was an actor or had a voice that they used for their art or trade and asked them to read the essays or poems before we had the conversation with the author. Now, we have our own voice actor, so we know what we're going to get every week, and we're not looking for people and knocking on doors and asking very busy actors to donate their time. So it has evolved, as has the writing really. So I wondered if you can reflect a little bit on how you see this section both in the journal and also the conversations we're having in this podcast change and evolve over the years. Dr. Mikkael Sekeres: Let's be honest, we're both writers, right? So as a writer, you're always looking for an outlet for your work. And there aren't a lot of outlets in medical journals. Yet there's this huge audience of doctors and nurses and pharmacists and social workers who read these journals and have this incredible experience with this deluge of humanity we see every single day. So this is an incredible thing, that Art of Oncology was even created a couple decades ago and provided this outlet for people. And what I have noticed is that people have become more daring. So let's play on the dare that you took up to even start this podcast. They've become more daring in what they're willing to write about and in how vulnerable they're willing to be in print. I've seen this in my own career, in my own writing, where 20 years ago I came out of fellowship and very cautiously started to write about some of the experiences that I had. But it was cautious and used more professional language and didn't get into some of the vulnerabilities that we face in treating patients and that we experience in ourselves and in our colleagues. But I think people have been willing to share more of themselves, particularly in the last decade. Dr. Lidia Schapira: I totally agree with you. And one of the things that I've noticed is that we have younger writers and younger authors who are now taught, even during their medical training and postgraduate work, that writing as a way of processing emotionally difficult experiences or sharing interesting thoughts or coming together as a community is really important to create the kind of community of thoughtful practitioners that we need to sustain us while we do this difficult work. So we are having more and more submissions and published work from very young colleagues, trainees. And I find it very interesting, sort of this multi-generational way of expressing the contact with very ill patients and sometimes very moving to think back on the first time you gave bad news for those of us who may have done it a hundred thousand times. Dr. Mikkael Sekeres: So I think you're spot on about this. We're getting younger authors. We're getting folks who are early career, mid career. Now, we're receiving essays from folks who are at the end of their career and want to reflect on that career. And people we wouldn't have expected would write these vulnerable essays either. I wonder if some of the pieces we're getting from younger authors stems from the fact that fellowship programs are finally paying attention to the experience of being a fellow and being a trainee. Dr. Lidia Schapira: Oh, my goodness. It was staring at them all this time. I think when you were a fellow a long time ago, you were one of the advocates of having fellows talk to one another about their experience, right? Dr. Mikkael Sekeres: You have an incredible memory. During our fellowship, we started a Balint Physician Awareness Group. So there's this movement started by the Ballint, a husband and wife team to start to get healthcare providers to reflect on their experience and share that experience with each other to build a community of support. And we started this in our fellowship. And you can imagine the initial reaction to this among the fellowship directors was, "Why do you need that? What do you think you're doing? There's no place for that." Dr. Lidia Schapira: "And we need our time to train them on the science." This is maybe an extra. Right? I think many of us have felt that trying to advance anything that deals with humanism or the human side of providing care is considered maybe optional. And I think you and I have been pushing against that for a long time. Dr. Mikkael Sekeres: I think that's exactly right. What I think legitimized it a little bit is we got funding for it from The Schwartz Foundation. We then actually published a study looking at it in JCO because the fellows in our program spent time at two different hospitals. So it was by design, this crossover study where half the fellows got the intervention of the Balint group and half didn't. And it turns out, lo and behold, they actually felt better and had a better experience as a fellow when they had the intervention. Dr. Lidia Schapira: Yeah. It's so interesting that we had to turn it into a randomized control trial or whatever design you picked, but you needed to fit it into the section of the journal that respected the logic and process of scientific research. But that brings me to another point, I think, that we have talked about so much, but I think it's important for us to share with listeners. And that is that the section of the journal that we've created now, it used to be When the Tumor Is Not the Target, and we've shortened the title. The Art of Oncology is not a section for papers that address research or where there is no methods and results section. It is intentionally meant to be different from the rest of the journal. Is that how you see it, too? Dr. Mikkael Sekeres: Oh, my word. Absolutely. And our reviewers occasionally will have a submission that is more of a classic article in how it's structured, and our reviewers will push against it. And sometimes we're able to get back to the author and say, could you write this in a different way, something that's more reflective of Art of Oncology? I think it's meant to be, I don't want to say a break from the way other articles are written, but maybe a different style, a different way of using your brain and reading these articles. And we've seen that they're popular. Sometimes they are the most read article, even in JCO, in a given week, which, of course, we share with each other and gloat a little bit when that happens. Dr. Lidia Schapira: Yes, and it doesn't have to be the article that made you cry. It can also be the article that made you think. That's been my intention as the editor for this section for the last 10 years. I've tried to be very intentional instead of bringing to our readership articles that delve into different parts of this lived experience of giving care. Some are moving more towards ethical conflicts. Some are moving more towards the emotional labor of the work. But some bring out different voices and different perspectives. And I'm proud to say that the submissions we get really come from all over the world. So I wonder, Mikkael, as you're entering into this role now, your decade as editor for this section and host for our podcast is how you view the editorial process. How does your team help the authors bring their best article forward? Dr. Mikkael Sekeres: I took the lead from you, and I'm not saying that just to blow wind in your sail, but you have always given feedback to authors, whether it's a request for a revision and acceptance or turning a piece down. That's been helpful, that's been thoughtful, that's been empathic. And in the end, I know that your goal has always been with these reviews, to give the author advice moving forward. I've tried to take a page out of your book by doing that as well. I go into every piece you shared with me that you do the same thing. When I get a submission, I look at it and I'm so excited about what could be there, what truth this could reveal, what angle of thinking about something that I've never thought about before. And our reviewers go into it the same way as well. These are folks who have read hundreds, if not thousands of essays. They themselves are readers. They're writers. They've had submissions accepted to Art of Oncology. They're looking for pieces that reflect a great truth that we all realize sometimes it's a great truth that no one wants to talk about, and this is the first time somebody's talking about it. Those are the best pieces. When you read it and say, "I thought the same thing," Or, "I had the exact same experience and no one's ever talked about it before." We're looking for good writing. We're looking for pieces that are focused on a patient. And you and I have both given talks on narrative medicine. And one of the slides I have in my talk is to remind people that the patient is the most important person in the room and to make that piece focused on the patient's experience and, of course, the writer's reaction to that experience. But in the end, it's all about our patients and their experience. And we're looking for, as you mentioned, perspectives that we haven't seen before. So we want to hear from people who are in training. We want to hear from people in different stages of their careers, people who practice in different settings, people who bring different cultural backgrounds to their own perspective on the practice of oncology. Dr. Lidia Schapira: And if I may point something out to our listeners, you are an artist in being able to bring the bedside verbatims to the page and make them live. I've always admired that in your writing, Mikkael. Can you tell us a little bit about your process for writing and how the role of the editor varies or is different from the role of the writer? Because I've learned a lot about editing, and I think the editor is an interpreter, in a way. I'm fascinated. I was brought up in a household where we spoke four languages, and I was always fascinated by trying to find the right word in a language and struggling with all of that. And I think some of my love for editing, which is different from my love for writing or reading, comes from that, from trying just to find the right word or trying to respect the voice of the author and make it even better or more artistic. Can you tell us a little bit about your process and your relationship to language and writing and editing? Dr. Mikkael Sekeres: It's great to hear you come from a family where you spoke four languages. I am an unfortunate monoglot. I'm terrible with foreign languages. But I come from a family of English majors. My dad was a journalist for the Providence Journal in Rhode island, then an editor for 10 years. My mom was an English major as well. So I always think that as parents, our job is to impart one employable skill to our kids so they don't live in our basement forever. Dr. Lidia Schapira: That's what my father thought, and that's why I'm a doctor and not a philosopher. Dr. Mikkael Sekeres: We joke that we moved to Miami, so there is no basement they can live in. But I always felt in my family, the employable skill was writing. I grew up and when I went to med school, I think, we put on this armor of the language we're learning, and we're very uncomfortable and nervous about the skills that we have. So we use this language to separate ourselves from our uncertainty around medicine. I distinctly remember at one point talking to my parents and saying something that was very complex, using medicalese. And they said to me, "Why are you talking to us like this? We're your parents. You don't have to use that language. Just use language we can understand." And that always resonated with me. That was kind of a North Star moment for me. That's what's guided my writing. And I have so much respect for the words that my patients use. And I think that's why I try to incorporate it in my essays as well. I always try to have my patient's voice literally there in their words as a focal point. I think as an editor, we go into a piece and we want to learn something. In the end, essays either educate or entertain, and ideally both. So we want to come out of a piece, we want to be either emotionally moved or we want to learn something and hopefully both things. And if I'm reading a piece as an editor and one of those two criteria have been satisfied, then I think it's a piece that's worth giving feedback to and advising revision. But I'm curious. I want to turn this a little bit, Lidia, because you're the one who always asks the questions. Dr. Lidia Schapira: I love asking questions. Dr. Mikkael Sekeres: So I'd like to ask you a question. When did you get started as a writer and a reader? And has that interest and skill changed over the course of your career? Dr. Lidia Schapira: Yes, I must say, I've always been a reader. That's my idea of heaven is a place with an enormous amount of books and a good espresso machine, just to give you an idea. So books have always provided companionship to me. They've provided community. I'm very happy living in a world of ideas, and I love art, and I love the sound of words and beautiful words put together beautifully. So that's basically reading and thinking, to me, are very closely aligned. And I also love and come from a culture, a society where conversation was valued. And I'm very sad that we don't anymore. We don't converse in our typical academic settings because we're so busy, and our language is mostly turned into units of efficiency. So I love the idea of communicating through language. Words, spoken words, things we listen to, things we read, things we write. My relationship to writing has been very undisciplined and inconsistent. And for all the years that I was an editor for this section, I found myself sort of inhibited from writing. And from the moment that I passed the baton on to you, I've been gushing. So I'm working on a book, and hopefully it'll be the first of several. But I've sort of kept my writing very private, and I've only been able to do it when I have a lot of time and no pressure. I'm not the kind of disciplined writer who can set aside time every day to write. I just can't do that. I need to be totally empty and free and be able to disagree with myself and erase a thousand words written on a page because they're just not good enough and start again. Dr. Mikkael Sekeres: I'm fascinated by that comment that you just made. What is it about being an editor that you feel has inhibited you from writing? Dr. Lidia Schapira: I think I was just busy. I was busy, again, immersing myself in the words that I needed to respond to and in the creative process of transforming essays into their best possible publishable form. And I think that's how I've interpreted the work of editors. I have tremendous respect for editors. I now need one to help me with my own work. But I think editors play an incredible role. And I am very happy that you view this role as something that is joyful. And I know that you have the amazing talent to do it. So I'm just very happy that we've made this transition. Dr. Mikkael Sekeres: Can I suggest that you've been giving as an editor also, because I think that your guidance to authors is precious? It's so valuable. Writers are so desperate to have that kind of caring advice. And I wonder if you've devoted all of your creative juices to doing that for the past 10 years at the expense of not being able to write yourself. So I'm so thrilled that you have the opportunity now. I will be the first person to buy your book, to write a review for your book. I can't wait to read it. Dr. Lidia Schapira: We've got a blurber. So now I need a good editor and a therapist, and I'm on my way. So on that note, I think it's time for us to end this lovely conversation, although we could go on for a long time. For our listeners. I want to thank you for having listened to me all these years, and I'm delighted that Dr. Sekeres will continue this wonderful program. And I look forward to listening while I drive, while I walk, and while I just simply am. Thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review and be sure to subscribe so you never miss an episode. You can find all of the ASCO shows at asco.org/podcasts. And thank you Mikkael. Dr. Mikkael Sekeres: Thank you so much, Lidia. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Like, share and subscribe so you never miss an episode and leave a rating or review. Guest Bio: Dr. Mikkael Sekeres is a Professor of Medicine and the Chief of the Division of Hematology at the Sylvester Comprehensive Cancer Center in Miami.

Listen to JCO Oncology Practice's Art of Oncology Practice article, "Did I Mess Up Today?" by Dr. John Sweetenham, ASCO Daily News Podcast host and recently retired after 40 years of practice in academic oncology. The article is followed by an interview with Sweetenham and host Dr. Lidia Schapira. Dr Sweetenham shares his reflections on his shrinking clinical comfort zone. TRANSCRIPT Narrator: Did I Mess Up Today? By John W. Sweetenham Reflections on My Shrinking Clinical Comfort Zone Hindsight and the passage of time have made me realize how much this question began to trouble me after each clinic as my clinical time reduced to one half day per week. After 40 years in oncology, I had reached the point where I had to ask myself whether a minimal commitment to clinical cancer care was best for my patients. I decided that it was not. Reluctantly, I left the world of direct patient care behind. Despite the identity crisis that resulted from giving up the foundational bedrock of my career, I felt substantial relief that I would no longer have to ask myself that question after each clinic—I felt that I had made the decision before (hopefully) I really did mess up. Reflecting on this in the past few months has made me question whether we have devoted sufficient resources to asking the question of how much clinical time is enough to maintain the clinical skills, knowledge, and competency that our patients deserve and should expect from us. Although we can continually refresh our clinical knowledge and understanding through continuing education and maintenance of certification, we mostly rely on our own judgment of our clinical competency—few of us receive outside signals that tell us we are not as sharp as we should be. There are many reasons why we may choose to reduce our clinical commitment over the course of a career and why it may be important to us to maintain some level of practice. The spectrum of reasons extends from being truly altruistic, through being more pragmatic to those driven by career advancement and self-interest. Many of those have played into my own decisions about clinical commitment, and I will use my own story to describe my journey of changing motivation and growing (I hope) self-awareness. I entered oncology fellowship in the United Kingdom in 1984. I chose oncology as a specialty because of the unique opportunity it provided then (and now) to combine new scientific discovery and understanding of this disease with compassionate, patient-centered care, which might improve lives for patients and their caregivers. I was trained in the UK tradition, which placed an emphasis on clinical experience and clinical skills, backed up by knowledge of emerging scientific discovery and data from clinical trials. Like many others at that time, I undertook a laboratory-based research project and was inspired by the work of true physician scientists—they became role models for me, and for what I thought would be my career trajectory. Once I finished fellowship and became junior faculty with a growing clinical and clinical research practice, I quickly began to realize that to make a meaningful contribution, I would not be able to sustain a clinical and laboratory presence—I admired those who could do this, but soon decided that I would need to make a choice. I knew that my primary passion was the clinic and that I did not have the skill set to sustain a laboratory project as well—it was an easy choice, and when I left the United Kingdom for the United States, I left my physician scientist ambitions behind but felt confident in my chosen clinical career path and had no sense of loss. I experienced many examples of culture shock when I moved to the United States. One of the least expected was the attitude toward clinical practice among many of my colleagues in academic oncology centers. Many sought to minimize their clinical commitment to give more protected time for research or other professional work. I found this puzzling initially, but have since observed that this is, to some extent, a reflection of the overall institutional priorities and culture. There is often tension between the perceived need for protected time and the expectations of academic departments and health systems for clinical revenue generation. Protected time becomes a contentious issue and increasingly has become the subject of negotiation during the recruitment process. In my early years in the US system, I found this difficult to grasp—why wouldn't trained physicians want to spend as much of their time as possible doing what we were trained to do? I could understand the need to achieve a balance in commitment for those with labs, but not the desire to do the absolute minimum of clinical work. After all, I was not aware of anyone who thought that they could be competent or competitive in bench research with a half day per week commitment to it, so why would anyone think that level of time commitment would be adequate for a clinical practice, especially for those coming straight out of fellowship? Over the next few years, as I began to take on more administrative responsibilities, my perspective began to change. The earliest signs that my clinical skills might be dulling came to me while on a busy inpatient service—I was beginning to feel that I was moving out of my comfort zone—although I was comfortable with the day-to day care of these patients, I wondered whether there were nuances to their care that I was missing. I had also started to realize that I was taking more time to make decisions than I had earlier in my career and started to wonder whether I was losing my edge. I decided it was time to leave the inpatient service. I continued with 2 full days in clinic for several years, which fitted well with my administrative commitment, and I felt fully back in my comfort zone and working at the top of my game although I no longer felt like quite the same, fully rounded clinician. The next step in my career took me to a new leadership position, a reduced clinical commitment of 1 day per week, and a growing sense of unease as to whether this was adequate to stay sharp clinically. I was still gaining great enjoyment and satisfaction from taking care of patients, and I also felt that as a physician leader, clinical practice earned me credibility among my physician colleagues—I could still relate to the issues they faced each day in taking care of patients with cancer. I was also strongly influenced by a former colleague in one of my previous positions who advised me to never give up the day job. That said, there were warning signs that I was becoming an administrator first and a clinician second—I was spending less time reading journals, my time at conferences was being taken up more with meetings outside of the scientific sessions, my publication rate was falling, and the speaker invitations were slowing down. I had to face the reality that my days as a KOL in the lymphoma world were numbered, and I should probably adjust my focus fully to my administrative/leadership role. As I made the decision to drop to a half-day clinic per week, I realized that this marked the most significant step in my shrinking clinical role. I became increasingly conflicted about this level of clinical practice. It was much more compatible with my administrative workload, but less satisfying for me as a physician. I began to feel like a visitor in the clinic and was able to sustain my practice only because of the excellent backup from the clinic nurses and advanced practice providers and the support of my physician colleagues. My level of engagement in the development of new trials was diminishing, and I was happy to leave this role to our excellent junior faculty. As with my inpatient experience, I started to feel as though my comfort zone was shrinking once again—some of my faculty colleagues were developing particular expertise in certain lymphoma subtypes, and I was happy that they were providing care for those groups, leaving me to focus on those diseases where I still felt I had maintained my expertise. Looking back, I think it was the credibility factor which persuaded me to continue with a minimal clinical commitment for as long as I did—I was concerned that giving up completely would result in a loss of respect from clinical colleagues. Subsequent experience confirmed that this was true. When I ultimately decided to hang up my stethoscope, I felt some relief that I had resolved my own internal conflict, but there is no question that it diminished the perception of me as a physician leader among my clinical colleagues. There is little published literature on the issue of clinical commitment and skills in oncology. In his wonderful perspective in the New England Journal of Medicine, Dr David Weinstock1 describes his experience of withdrawing from clinical practice and compares this process with bereavement. His account of this process certainly resonates with me although my feelings on stepping down were a mixture of regret and relief. Recognizing that oncology practice remains, to some extent, an art, it is difficult to measure what makes any of us competent, compassionate, and effective oncologists. We have to rely on our own intuition to tell us when we are functioning at our peak and when we may be starting to lose our edge—it is unlikely that anyone else is going to tell us unless there is an egregious error. For me, one half day per week in clinic proved to be insufficient for me to feel fully engaged, truly part of a care team, and fully up to date. Giving up was the right decision for me and my patients, despite the loss of credibility with my colleagues. There was a sense of loss with each stage in the process of my dwindling clinical commitment, but this was offset by the knowledge that I had not waited too long to make changes. Dr. Lidia Schapira: Hello and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Professor of Medicine at Stanford University. Today, we are joined by Dr. John Sweetenham, whom you may recognize as the host of the ASCO Daily News podcast. Dr. Sweetenham has recently retired or partly retired after 40 years of practice in academic oncology, and in this episode he'll be discussing his Art of Oncology Practice article, "Did I Mess Up Today?" At the time of this recording, our guest has no disclosures. John, welcome to our podcast and thank you for joining us today. Dr. John Sweetenham: Thank you for having me. Dr. Lidia Schapira: I'd like to start just by asking a little bit about your process and perhaps why you wrote this. Was this inspired sort of by a conversation? Did this just gush out of you when you saw your last patient? Tell us a little bit about the story of this article. Dr. John Sweetenham: Yeah, it didn't really gush out of me. In fact, I originally started to write this probably back eight or nine months ago, and I wrote a couple of paragraphs and then I'm not quite sure what happened. I didn't think it was very good. Life took over, other things were going on, and then I revisited it about a month to six weeks ago. So the process has been actually fairly slow in terms of putting this down on paper, but it wasn't really the result of a conversation. A couple of things spurred me on to do it. The first was the most obvious one, that it really did occur to me, particularly as I hung up my stethoscope and walked away completely from clinical practice, that I did have some sense of relief. Because I didn't have that nagging voice in the back of my head saying to me anymore, "I just want to make sure that I did everything right today." And so I think that was a part of it. And then it was also partly inspired by something which I read a few years back now. And I actually referenced it in my article, which was that wonderful article by Dr. David Weinstock, who had a somewhat different but parallel experience. And that had really resonated with me. And particularly over the last two or three years of my clinical career, like I said, I began to feel uneasy. And so it wasn't really a kind of blinding flash or anything. It was really just over time, wanting to get it down on paper because I felt that I can't be the only person who feels this way. Dr. Lidia Schapira: John, let's talk a little bit about some of the themes that I found so compelling in your article. The first is your experience of how we value clinical activity in the United States. And you contrast that very much with your experience in the UK. You talk about having started your fellowship in oncology in the '80s in the UK and then transitioning to the academic culture in the US. Can you reflect a little bit on that for us, both how it was then and how it is now? Dr. John Sweetenham: I preface that by saying it is 25 years since I practiced in the UK, so I don't really know whether it's now as it was back then. As I mentioned in that article, I think at the time that I went through medical school and undertook my fellowship, the training at that time and the culture was very, very clinically based. I always remember the fact that we were taught very heavily, "Don't rely on tests. Tests are confirmatory. You've got to be a good diagnostician. You have to understand, listen to the patient, he'll tell you the diagnosis," and so on and so forth. So that the grounding, particularly during med school and early fellowship, was very much based on a solid being as a clinician. Now, in 2024, I think, that's actually a little unrealistic, we don't do it quite that way anymore. And for me, the contrast when I moved to the US was not so much in terms of clinical skills, because I think that clinical skills were very comparable. I don't think that's really a difference. I would say that clinical skills and clinical time are not always consistently valued as highly from one institution to the other. And I think it is an institutional, cultural thing. I've certainly worked in one or two places where there is a very, very strong commitment to clinical work and it is very highly valued. And I've worked in one or two places where that's less so. There isn't really a right or wrong about that. I think different places have different priorities. But I did find certainly when I moved and was probably somewhat naive moving into the US system because I didn't really realize what I was coming to, and there were definite culture shock elements of that. But at that time, in 2000, when I made the transition, I would say that at that time, overall, I think that clinical medicine was probably more highly valued in the UK than it was in the US or clinical skills. I think that's changed now, almost certainly. Dr. Lidia Schapira: Interesting that you referred to as a clinical culture, a term that I will adopt going forward. But let's talk a little bit about this process of having your time basically devoted more to administrative governance, leadership issues or tasks, and going from being comfortable in the inpatient setting to giving that up and then going to outpatient two days a week, one day a week, half a day a week. And then this moment when you say, "I just can't do this," is there, you think, a point, a threshold? And how would we know where to set that, to say that below that threshold, in terms of volume and experience, one loses competence and skills? Dr. John Sweetenham: I certainly don't have the answer. And I thought really hard about this and how could we improve on this. And is there some way that we would be able to assess this? And the thing that I thought back to was that back in the early 2000s, when I first moved to the US. At that time, for ECFMG purposes, I had to do something that was called the Clinical Skills Assessment, where you went to Philadelphia and to the ECFMG offices and you saw actor patients and you had to do three or four of these and someone had a camera in the room and so they were watching and assessing your clinical skills. And honestly, I slightly hesitate to say this, but it was probably pretty meaningless. I can't imagine my clinical skills could have been judged in that way. I think it's made me believe that there probably isn't an outside way of doing this. I think it's down to all of us individually and our internal compass. And I think that what it requires is for, certainly in my case, just to be aware. I think it's a self awareness thing. Dare I say it, you have to recognize as you get a little older you probably get a little less sharp than you were, and there are signals if you're prepared to listen to them. I remember on the inpatient service, and I used to love the inpatient service. I love teaching the house staff and so on. It was really good fun. But then I got to a point where I was on a very, very busy hem malignancies inpatient service and started to have to think about which antibiotics to use just a little bit longer than I had done in the past. And it was little things like that. I was not so familiar with the trials that some of these patients could be able to get on when they were inpatient. And so little signals like that started to ring in my ear and tell me, "Well, if you're taking longer and if you're thinking harder, then maybe it's time to move on from this." And I would say the two most difficult things for me to do overall were obviously giving up clinical work entirely. But before that, giving up the inpatient service was a big deal because I never really felt fully rounded as an oncologist after that. As the hem malignancies docked back 15 years ago, a very big component of the care was still inpatient, and I wasn't doing that part of my patient care anymore. And that was kind of a big change. Dr. Lidia Schapira: So many things to follow up on. Let me try to take them apart. I'm hearing also two different themes here. One is the competence issue as it relates to aging. And there have been some recent articles about that, about whether or not we actually should require that physicians above a certain age demonstrate their competence. And this is, I think, an ongoing theme in academic medicine. But the other that I hear relates to volume. And even if you are sort of at the top of your game and very young, if you're only in the clinic half a day a week, you can't possibly have the clinical experience that just comes from seeing a lot of patients. Can you help us think through the difference between these two sort of running threads that both, I think, contribute to the idea of whether or not one is competent as an expert in a field? Dr. John Sweetenham: I think that the discussion around age and clinical competence is a very interesting one. I just don't know how you measure it other than your own internal system for judging that. I'm not sure how you would ever manage that. I suppose in some of the more procedure based specialties, maybe there would be skill based ways that you could do this, but otherwise, I just don't know. And I certainly wouldn't want to ever be in a position of making a judgment based on age on whether somebody should or shouldn't be working. I just felt that for me, it was the right time. In terms of this issue of volume and time in the clinic, I actually do feel that there are some important messages there that maybe we need to think about. And I say this with total respect, but I think straight out of fellowship, a half a day in a clinic, to me doesn't feel like it's going to give that individual the experience they need for 30 years of clinical practice. I may be wrong about that. I'm sure there are exceptions to that and highly competent individuals who can do that. But I worry that someone who starts out their clinical oncology career with a minimal clinical commitment, I worry as to whether that is the best way for them to develop and maintain their clinical skills. Dr. Lidia Schapira: And this brings me to another question, which is sort of our oncology workforce and the investment that we all have in our excellent clinicians and experts in diseases. If we are to pluck some of our best to perform more and more leadership, administrative and governance roles, aren't we doing a disservice to our patients and future patients? Dr. John Sweetenham: I think that in terms of our oncology leadership, both clinically and academically, it could use a bit less gray hair and I think that there are enormously talented mid-career folks who aren't necessarily advanced and getting the opportunities that they should have to really shine in those areas to develop full time clinical and academic practices and be the ones who are really clinically engaged. And then the people of, I won't say my generation, maybe the generation below me now, it seems to me that there is a benefit to gaining administrative leadership roles for those who want to go in that direction as you advance further through your career and that perhaps making sure that those people in their mid-career role, where they're probably at their most productive, are able to do clinically the things that they want to do. What I'm trying to say is I think that you're quite right that we do pick off people who are going to be really talented in a specific direction and distract them from their clinical practice. Maybe we just have to be a bit more reserved about how we do that and not distract those people who are really strong clinicians and pull them in directions that they may, indeed, be attracted to, but perhaps it's a little bit early for them to be doing it. Dr. Lidia Schapira: It's an interesting question and dilemma because on the one hand we say we don't want people who just have business degrees administrating in medical spaces. But on the other hand, we don't want to distract or pluck all of our clinical talent for administrative roles that take them away from what we prize the most and what our workforce actually needs. And that sort of brings me to my next question, which is something I'm sure you've thought about, which is, as we get older and as we have more gray hair, those of us or those of you who choose to allow yourself to be seen as gray, some of us still cover, how do we present interesting career tracks also that acknowledge the fact that perhaps people want to pivot or take on new roles and still keep them engaged in actively seeing patients because they have so much to offer? Dr. John Sweetenham: I think the key there is that there has to be a balance between how much of somebody's time, a physician's time should be taken up in those roles. I'll only speak for myself here, but when I got into a more administrative role, it was quite seductive in a way and I quite enjoyed it. It's a very different perspective. You're doing very different things, but you do get this feeling that you're still having impact, you're just doing it in a different framework. It is intriguing and it's a lot of fun. In a way, I think it comes down to time. I think that somewhere around, for me, a 40% clinical commitment, I think I could have continued that. And I think if I could have resisted the temptation to be drawn more into the administrative side, or if somebody had said to me, "No, you're not going to do that," then I would have resisted the temptation to do that. I think that there are people who would say, "Well, you can't take on a physician leadership role in a busy academic center and do it as a part time job." Well, there's probably an element of truth in that, but you certainly can't take care of patients as a part time job either. And I do think that one of the things that we should ask ourselves maybe in terms of developing physician leaders is should we insist that there is a minimum amount of clinical time that the individual still has to commit to? And that may be the answer. I think that it does help to maintain credibility among colleagues, which, I think, is very important, as I mentioned in the article. So that's my only perhaps suggestion I would make is just don't allow your physician leaders to get so wrapped up in this that they start to kind of walk away from what we were all trained to do. Dr. Lidia Schapira: I'd love to hear you talk a little bit more about your experiences, reflections on what you call the 'art of oncology' and the 'art of practicing in oncology.' Dr. John Sweetenham: I think that many of us, myself included, tried throughout my career to be evidence-based. I tried really hard to do that, and I hope for the most part, I succeeded. But I think there are times when that does get challenged. Let me give you one example that comes to mind, and that would be just occasionally, from time to time, I had the good fortune to take care of people of some power and influence. And there is, I think, in that situation, a temptation to be drawn into doing what those people want you to do, rather than what you think is the right thing to do. It can be very, very difficult to resist that. And so to my mind, part of the art is around being able to convince those folks that what they're suggesting would not necessarily be in their best interest. That would just be one example. I think the other thing also that strikes me is you can't walk away from the emotion of what we do. And I still think back to some of the folks that I took care of when I was practicing bone marrow transplantation. This would be even back in the UK and folks would contact me some years afterwards. Some of my former patients from the UK would contact me and would still keep in touch and had medical complications, oncology complications, that followed them. And it struck me then, they were 5,000 miles away. I had no useful advice to give them, really, other than to listen to their physicians and get second opinions and those kinds of practical things. But it did strike me that part of the art is, and perhaps art is the wrong word, but there is a big emotional commitment when people feel 20 years on that they're still wanting to keep in touch with you and let you know what's happening in their lives, you know. And so I think that however much we try to be scientific and detach ourselves from all of that, our interactions with folks, I think sometimes we don't realize how impactful and long lasting they can be. Dr. Lidia Schapira: I would say that that speaks to your success in establishing a therapeutic alliance, which is probably one of the things that we often undervalue, but is a huge element of truly human-centered, compassionate practice, whatever we want to call it. But I do have one last question, and that is how you have dealt with or how you have learned to deal with in your practice, with some of these feelings of regret and relief that you mentioned that came with hanging up the stethoscope but the huge emotions that accompany making decisions about one's practice. Dr. John Sweetenham: It has almost been a natural sort of stepwise progression. So it's almost a journey for me. And so like I mentioned to you earlier on, I struggled around the time when I gave up inpatient practice. I struggled again a little bit when I gave it up completely. Although it was very much balanced by this sense that I didn't have to worry if I was kind of screwing up anymore, so that was good. But I think the other thing is there are other things going on. And so rather than dwelling on that, I've stayed active to some extent in the oncology world by some of the other things I do. I'm still trying to write one or two other things at the moment. And I guess it's partly a kind of distraction, really that has helped me to get through it. But I think in the end doing other stuff, I've actually traveled a fair bit. My wife and I have traveled a fair bit since I actually stopped working. And the other thing, I guess it sounds a bit lame and corny, but after 40 years or so, there are a lot of good memories to think back on. And again, it sounds very cliched and corny - I console myself with the fact that I hope for some of the folks that I took care of that I made a difference. And if I did, then I'm happy with that. I have closure. Dr. Lidia Schapira: What a lovely thought. I was thinking of the word distraction as well before you said it. Well, listen, I look forward to reading what you write and to being inspired and to continue to be in conversation with you. Thank you so much for joining our show today. And for our listeners, until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review and be sure to subscribe so you never miss an episode. You can find all of the ASCO shows at asco.org/podcasts. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Show Notes: Like, share and subscribe so you never miss an episode and leave a rating or review. Guest Bio: Dr. Sweetenham, host of ASCO Daily News podcast, has recently retired after 40 years of practice in academic oncology.

Listen to ASCO's Journal of Clinical Oncology Art of Oncology poem, "Episteme" by Dr. Michael Slade, who is a medical oncologist at Washington University School of Medicine. The poem is followed by an interview with Slade and host Dr. Lidia Schapira. Dr Slade highlights the tension between what is known and unknown and what spoken and unspoken as physicians try to care for our patients without destroying their ability to live with their disease. TRANSCRIPT Narrator: Episteme, by Michael J. Slade, MD, MSCI I know you know, must know. The tides have woken you night after night after night, borrowed blood flowing in and now out, unaided by your dwindling marrow. You must know your story is read and written in a perfecta tense. You must know the end somewhere deep in your empty bones. Still, you speak of summers, of fish caught or lost beneath the calm surface of a distant lake. "There's nothing to do in December," you say, skin pale in the cool light leaking from the door. It's late now, deep in the evening and my knees ache as I nod and wonder about a different world where you were not you and this was all decided months ago. "Day by day," I mutter and shuffle to my next door, leaving you alone to wait on the cataclysm, on that night when the blood of strangers runs wild and catches your breath, that night in the ICU, where they wait, tube in hand as you sweat and shake, where I still promise to care for you knowing, knowing you will never wake again. Dr. Lidia Schapira: Hello and welcome to JCO's Cancer Stories, the Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira. I'm a Professor of Medicine at Stanford University. Today we are joined by Dr. Michael Slade, a Medical Oncologist at Washington University School of Medicine. In this episode, we will be discussing his Art of Oncology poem, "Episteme." Our guest's disclosures will be linked in the transcript. Mike, welcome to our podcast and thank you for joining us. Dr. Michael Slade: Thank you, Lidia. It's great to be here. Dr. Lidia Schapira: It's a pleasure to have you. Let's start by talking a little bit about your relationship to writing prose, poetry. Is this something that you've always done? Do you want to share with us a little bit about what it means to you and when you have time to write? Dr. Michael Slade: I'd say, I have absolutely no formal training as a poet or honestly in anything else, but this is something I've done since college. And especially starting in medical school, this was really a deliberate practice for me to try to find a way to unload some of the harder experiences that we can go through as medical providers. Dr. Lidia Schapira: It's interesting to hear you say that. Many of our authors have talked about using their writing as a way of processing emotionally difficult experiences and just very important meaningful experiences. But there's so much artistry in your work. I just wanted to ask you a little bit more about that. How do you find the relationship to not just the writing as a way of processing, but as art that you want to share and publish. I've seen that you've published poems, quite a few of them in the last year alone. Dr. Michael Slade: Yeah, I would say the publishing piece of this came very far down the road for me, that I've been writing for over a decade before I think I even submitted anything for publication. And for me, the ability to publish is more of a- Is a way of putting yourself out there and as a motivation to really re-examine what you've written and not just scrawl it on a piece of paper and sort of stick it back on a shelf somewhere, but to be able to go back to some of these experiences and really delve a little bit deeper, both with the language, but also what was the experience? Why was this meaningful? And often things that end up in print for me are things that I've been playing with for a number of years. It is just sort of an ability to go deeper there is the reason why I have published some of these works. Dr. Lidia Schapira: I am very interested in the theme of time and your use of pronouns. There's a lot of negotiating. What is yours and what is your patients'? I assume the "I" is the oncologist, right? In this particular case, since the readership of JCO are mostly clinical oncologists, it's sort of meant to be an affiliation with a reader. And there's a lot of "I," but then there's a lot of mine. Can you talk a little bit about how you have chosen to address the patient directly and your colleagues directly and put yourself out there using first person as well? Dr. Michael Slade: I think certainly, as I wrote this, and I tend to write a lot as I come off of sort of tough stretches of clinical work, and as I wrote this, I think, I was trying to capture a little bit of the anguish that I think a lot of us feel as oncologists, especially around this question of what we know and what is knowledge for the oncologist. The reality is the things that we know sort of above the neck tend to be very statistical, that we say, "Oh, the chances of you responding," "The chances of you surviving," "The chances of you being cured," it's very numbers based, but it's probabilistic. And when we talk to patients and often when we talk to ourselves, we really use this idea of knowing in a very different way, that we know that something's going to happen because of our past experience or because of what we're seeing right in front of us. I think that's something that I think a lot of oncologists probably identify with very closely is that what do we do when we feel like we know something in a way that's almost deeper than the academic way that we speak of knowing. Dr. Lidia Schapira: Let's talk about that. And that is, in fact, the title you chose for your poem. Why not just use the word knowledge? Tell us a little bit about that choice. Dr. Michael Slade" When we talked about knowing, both academically and my background before I came to medicine, as I trained in philosophy, we talked about epistemology or episteme. Often, we talk about knowing both in medicine and in sort of the wider philosophical discussions, we talk about it in this very abstract way that if you were to sit down with a patient and really try to unpack it, they're not going to have any idea. This isn't relevant to practical life in a lot of ways. They want to know, "Am I going to be cured?" "Am I going to have this side effect?" "Am I going to make it out of the hospital?" And the type of knowing that we do within science is not that type of knowing. It's all probabilistic. And to me, I think, trying to pull back a little bit, and by using the sort of Greek root, it sort of places this idea of knowledge at a remove that I think is useful. Dr. Lidia Schapira: Mike, I've often used the analogy that poetry is almost like abstract art sometimes, because it invites the reader to imagine things. So if we think of this poem sort of as art, can we walk through this together and take it from the top and see what we see or what these ideas trigger? You start directly by addressing the I know, you know, you must know. And then you present the case, if I got this right, of somebody with a dwindling marrow, that's an empty bone, so an inefficient marrow. And I assume, since you're a bone marrow transplanter, that means this patient had a disease that was incurable here, and you sort of insist that you must know. Tell me a little bit about that tension, that emotional tension that comes up for me as I read that, those opening lines where you're sort of insisting that you must know something that you're not sharing with me that you know. Dr. Michael Slade: I think for me, that's really trying to express the gap that can emerge between those of us who do this professionally and our patients who have to live through these experiences. And we can say, "I have seen this story play out so many times, and I know things are not going well. I know how this is going to end." But for the patient, this is, obviously, every patient is an n-of-1 with their own experience, and they may have had family members with similar diseases, they may have had friends. They may join these really wonderful patient support groups where people can sort of talk about what the process of cancer treatment is. But for the patient, they are living through it day to day. And we may feel with our accumulated knowledge that it's very clear how things are going and that either their optimism or pessimism or sort of whatever the patient's base emotional reaction is to the clinical situation is fundamentally incorrect. It's like you have to put these pieces together in the way that I do. And the reality is that there is a huge gap that can emerge between us and our patients, and it can lead to frustration and anguish and a lot of negative emotions, I think, from clinicians that aren't aimed at the patient, but they're really aimed at the fact that we feel like we're not talking about the same situation. I think that's what that first piece of the poem is really trying to capture, is that anguish at that type of gap. Dr. Lidia Schapira: And you say it very clearly. You say, "You must know your story is read and written in the perfect tense." It's almost like you're shouting it here, right? Dr. Michael Slade: But in sort of a weird, obscure way that if you tried to tell a patient sort of a grammatical metaphor for how poorly their hospitalization was going. Most patients, unless they're English literature professors, will look at you as sort of with this, "What are you talking about?" I think, again, it's that gap. It's this very academic, removed way that we often look at this, especially when we're trying to shield ourselves from this very human anguish of knowing that there's this real person in front of you who's not doing well and that you feel like you kind of know how the story is going to end. Dr. Lidia Schapira: Let's go a little deeper into that then. It's really about your feelings then here. It's your frustration. You want the patient to mirror back to you that they get how bad this is, and they can't because they are trapped in that body, in that situation. And as you just say, and then you say in the lines that follow, "they are coming up for air." They're thinking of the summer and the fish that may be caught or not caught. They may know it somewhere, but they can't quite recite that back to you. And that leads the writer, the author, to voice this inner tension. Did I get that right? Dr. Michael Slade: I think that's exactly it. And sort of towards the end of that verse, there's also sort of this counterfactual that certainly different choices can always be made in the course of treatment. And especially for us clinicians when we're encountering a patient who interprets their disease a little bit differently than we do, and they say, "Oh, I feel fine. Why do I need chemo after surgery?" Or, "Oh, I feel fine. Why do I need a bone marrow transplant?" And sometimes people will make choices which makes their immediate life better, but we are always stuck in this sort of feeling of, "Oh, man. If only we had done things a little bit differently." I acknowledge that we just can't align our views of the world, but still at the same time saying, "Well, I don't know, things would have been better if you'd listened to me. Maybe you made the right choice for you and your disease process." So it's always that gap between what we know academically and what we sort of know below the neck. And then for patients, their experience is often very different from ours because they have to live through this. Dr. Lidia Schapira: I'm interested in the physician narrator experience here, and I was really impressed by the fact that you convey the tension on the emotional load. But the only thing that you write and communicate directly to the reader is the physical aching, when you say, "it's the evening and my knees ache," and then you say "I shuffle," suggesting that you're physically tired. I just wonder if you could talk a little bit more about that, the way that you have inserted the fatigue factor of the narrator here, but through the description of physical symptoms. Dr. Michael Slade: I think there's a little bit of blending there, because I think on the one hand, certainly this emotional anguish, mental anguish can certainly manifest as fatigue, and sometimes can be sort of a little bit of a metaphorical blend there. But I think the other thing that we often really struggle with as physicians and as other providers is how much are we letting ourselves get into the story that the patient is experiencing, but even the story that we're trying to objectively put together. And because, for example, we had a patient who tried a treatment and they had a rare side effect, a lot of us will admit, "Hey, I had a patient with a bad outcome when they got X,Y,Z." Even if the data looks really good because of my own emotional processing or I do my best. And I know a lot of other physicians talk about this, but if you are tired, hungry, under or over caffeinated, having bad things going at home a lot of times for us, we worry about letting our personal lives bleed into our interactions with patients. And that's really challenging because I think we are at our best when we bring our humanness into the clinic room, into the hospital room. We also have to make sure that we're not saying, "Oh, am I just down because I'm tired, and that's why I think this patient's going to do poorly?" Or is it actually supported by the evidence in front of us? So I think the way that the narrator kind of moves in and out of this piece and how much they are a part of the story is a big piece of the poem. Dr. Lidia Schapira: It is a very big piece of the poem. And as I read some of the other poems you've written, I think that I was also impressed by this construction of the boundaries and the separateness between the patient and the physician narrator and how you negotiate that when you're waiting for a result, when you're waiting for time, when you say it's really the patient's story, but it's yours too. There's a fluidity about this perspective. Did I get that right? Dr. Michael Slade: I think that's an absolutely wonderful way to describe it. I think fluidity in particular is, yeah, that we think of things as very separate from each other and that I'm me and you're you and there's your family and there's the rest of the team. But all of this stuff, not to get too sort of hippie with it, but there's so much resonance when you're in these relationships that you have with patients. And especially in cancer care, we have very deep, often very prolonged and somewhat intense relationships with patients and their families as they go through this stuff. Boundaries can become blurred. And again, I think it's challenging because sometimes we are at our best when we blur those boundaries a little bit. But there's certainly- you can be pulled into a patient's story in a way that is not helpful for you long term, but even not helpful for the patient short term. And I think that's the challenge. And you're right. I spend a lot of my work sort of thinking about this. And a lot of my professional life is also thinking about this. Dr. Lidia Schapira: I would say it a little differently. And it's that you are co-constructing an 'us' that is between you and they, or you and he or she, or however you see this. And that's the mind part. Others have talked about cases where there is a deep connection between physician and patient, where the physician is invited to be a co-editor of that patient narrative. I think there's a lot of richness in that. And I think that your work and your poetry certainly takes us right there. And so with that, I want to take us to the end of the poem, which is terrifying.There's going to be, you use the word 'cataclysmic', which means, this is an upheaval, something violent about to happen. And the way I interpret it is your patient is neutropenic and septic and shaking and rigoring and is getting transfused. And the "They," which isn't you or your team, it's the 'they' are waiting for it too and going into probably an intubation in the ICU. And then there's this promise that you won't abandon the patient while 'they' are going to be doing these things. And we already know how this story is going to end. Is that what you are trying to convey? Dr. Michael Slade: It's funny because until you sort of read it out, I was like, I didn't realize how much I threw our ICU colleagues under the bus as part of this poem. So if any of you guys are listening, I have immense respect and value for what you do. But no, and this is sort of the big question that we run into with these patients and what's the right response when we feel like we can see the future and then we turn out to be correct. How do we not, I guess, insulate ourselves from that in a way that's not helpful for us and it's not helpful for the patient? And yeah, so that's sort of, as I said, you read the story sort of as it was laid down, but yeah. What do you do? What's the right response when you feel like you're getting to the end and that you feel like you've seen it coming for weeks? And I think that's really the challenge. And the poem sort of suggests an answer to that question. But I think everybody kind of has their own process that they have to go through. As you see, unfortunately, as an oncologist, case after case of folks that- cancer is tough and our treatments are getting better, but I'm a myeloma physician. I have cured zero patients so far. And that's hard at the end of the story. It's always hard. Dr. Lidia Schapira: It is hard. Can you tell us a little bit about your choice of language and why you keep repeating the 'knowing' and then italicize it at the end, just to add another dimension of emphasis there? Dr. Michael Slade: As someone who loves language and has always been interested in it from a philosophical perspective, but literary perspective as well, there's really, really sharp limitations to what language can express. And we can unpack and define and redefine and suggest. But there's something- often, we in these situations, run up into a place where words are totally insufficient. And I feel like often what we end up doing and what I end up doing in writing but I think even in our interactions with people, we just sort of use the same words over and over again, hoping that somehow the meaning will morph mid-interaction and suddenly we'll have that connection with someone where they'll hear what we're trying to say. And for me, I kept coming back to this idea of knowing, knowing, knowing. The narrator's trying to express something that they just can't quite get their arms around. And I think the best and the closest I can get to in similar situations is something like this, is trying to write out these experiences in a way that kind of captures that feeling. I hope I at least captured a piece of it. Dr. Lidia Schapira: Certainly. I loved your writing and I think you did. Despite how difficult it is to talk about this and how difficult it must have been for you to live through it, there's a real gentleness about the way you take the reader through this. And it evolves. Really, it flows beautifully. So thank you for that. Dr. Michael Slade: I very much appreciate the writing. And I will say to the folks who read the original version of this poem, both in my personal life and then at JCO, this is not the original form the poem was in. So I think other people have layered in their experiences here. And again, I love to see this come out on the other end and say, this is more beautiful than what I started with. So I have a lot of gratitude to folks who have given me some pointers about how to improve this. Dr. Lidia Schapira: It's lovely to hear you say that. To end this, I would love to hear you tell me a little bit about comments, perhaps, that colleagues or even patients may have made based on work that you've published or what you hope that people will take away from this. Dr. Michael Slade: I had published maybe one poem back in medical school, and then I published something as a fellow. And I remember in our program, we have this big office and we basically all have cubicles, and we have sort of the computers all set up, and we're in and out, you know, seeing consults and everything else. And I had published something in JCO a few years ago, that was about indirectly the experience of trying to be on call and triage patients and all this. I had maybe three or four different fellows within the week that that was published, sort of stick their head over and be like, "I never read poetry, but I saw your name on this. So I flipped to the back of the JCO magazine and read it." And that captured so many of the feelings that I've had this year in a way that I couldn't put on paper. Again, I've been writing stuff since college and most of it sits in a folder somewhere and it's never read by anybody. So the idea that it could go out into the world and could make people have that sort of sense of catharsis that I'm not alone in this. Somebody else has had this experience and had this feeling. I've had that same experience with some of my very brilliant colleagues who paint or who participate in other sorts of artistic endeavors. And it's nice to know that there's a community of people out here. We're all just trying to navigate the same stuff. And if we can sort of help each other, if we can capture these experiences and retranslate them in a way that people can process their own, sometimes, grief. I think it's really wonderful. Dr. Lidia Schapira: Yes. To create a thoughtful community and accompany one another. Well, thank you for sharing your art and your wisdom and your knowing with us today, and please keep writing. And for our listeners, until next time, thank you for listening to JCO's Cancer Stories, the Art of Oncology. Don't forget to give us a rating or review and be sure to subscribe so you never miss an episode. You can find all of the ASCO shows at asco.org/podcasts. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Like, share and subscribe so you never miss an episode and leave a rating or review. Guest Bio: Dr. Michael Slade is a Medical Oncologist at Washington University School of Medicine.