Cancer Stories: The Art of Oncology

The award-winning podcast JCO Cancer Stories: The Art of Oncology invites you on an intimate journey with heartfelt narratives, poignant reflections, and thoughtful dialogues. Hosted by Dr. Mikkael Sekeres, the podcast explores the hidden emotions, intense experiences, and resilient strength of clinicians, caregivers, and those living with cancer. This podcast is essential for nourishing the "art" behind the science of oncology.

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Room 402: Visiting the Same Hospital Room as a Family Member, and Then as a Doctor 05/12/2026

The Liver We Share: A Medical Student Becomes a Living Donor for His Wife 04/28/2026

The Good Oncologist: Doctoring Lessons from the Art of Oncology 04/14/2026

The Power of “I Don’t Know”: Why Admitting Uncertainty is an Oncologist’s Greatest Strength 03/24/2026

The Power of “I Don’t Know”: Why Admitting Uncertainty is an Oncologist’s Greatest Strength Listen to JCO's Art of Oncology article, by Dr. Sondos Zayed, who is a radiation oncologist at The Ottawa Hospital and an assistant professor at the University of Ottawa, Canada. The article is followed by an interview with Zayed and host Dr. Mikkael Sekeres. Dr Zayed shares a reflection on the unexpected power of saying “I don’t know,” and how honest uncertainty can deepen trust, guide care and create space for what truly matters in oncology. TRANSCRIPT Narrator: , Sondos, Zayed, MD, MPH, FRCPC Mikkael Sekeres: Welcome back to JCO's Cancer Stories: The Art of Oncology. This ASCO podcast features intimate narratives and perspectives from authors exploring their experiences in oncology. 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. Joining us today is Dr. Sondos Zayed, a radiation oncologist at the Ottawa Hospital and Assistant Professor at the University of Ottawa, Canada, to discuss her Journal of Clinical Oncology article, "The Power of I Don't Know." At the time of this recording, our guest has no disclosures. She and I have agreed to address each other by first names. Sondos, thank you for contributing to the Journal of Clinical Oncology, and what a pleasure it is to have you join us to discuss your article. Dr. Sondos Zayed: Thank you so much for having me. It's a privilege. Mikkael Sekeres: Can you tell us a little bit about yourself? Where are you from? And walk us through your career up to this point. Dr. Sondos Zayed: Yeah, oh my goodness. So it seems like such a long road and yet so many years left in my career, hopefully. You know, I'm Canadian, and I had the opportunity to grow up in Montreal, which was wonderful, and I went to McGill Medical School, and then after that pursued Radiation Oncology Residency at Western University. And following that I did a fellowship specializing in GI and CNS malignancies with MR-Linac technology in Toronto, and eventually landed in Ottawa, where right now I'm a radiation oncologist treating GI and CNS malignancies and an Assistant Professor at the University of Ottawa. Mikkael Sekeres: That's fantastic. How far are you out of training? Dr. Sondos Zayed: Well, this would be officially my second year essentially as an independent radiation oncologist. Mikkael Sekeres: Wonderful. And I'm curious, what drew you to radiation oncology? Dr. Sondos Zayed: I always say that it was meant to be. And the reason being, when I was in medical school at McGill, they parachuted us out into very niche specialties that we wouldn't otherwise have exposure to. And essentially the way that they would do that is they'd send us an email and say, you know, “Show up at this place, at this location. Here's attached a PowerPoint, just review it before you go." And I get this email and the PowerPoint is talking about, you know, photons and electrons, linear accelerators. And I'm like, "I have no idea what's going on. This is so confusing." I thought I was in medicine. And so I do follow the instructions and I was so lucky that I had such a wonderful supervisor, and he showed me the machines and I saw the coolest cases that day, and it was just such a wonderful experience and the most captivating. And so I just kept on wanting to go back. And the rest is literally history. The really, really fascinating thing about radiation oncology is that it's the mix of physics, it's a mix of like technology, and at the same time there's the medicine and the clinical aspect of it. And there's obviously the privilege to be able to support patients on their most vulnerable journeys with their cancer diagnosis and treatment, et cetera. And so it's a mix of the most interesting things all around and I felt like the best fit for me. Mikkael Sekeres: Well, your passion for it is absolutely palpable. It's really fun to hear the excitement in your voice. Isn't it interesting how one mentor can make the difference in the career path we choose? Dr. Sondos Zayed: Absolutely. Never underestimate the impact they can have on any single trainee at any point in time. It really does turn things around for many people, and it can inspire them to pursue something that they would have never thought of pursuing before. Mikkael Sekeres: I had a very similar experience. It was during fellowship that my very first month of fellowship I was placed on the leukemia service with Rich Stone at Dana-Farber, and I never turned back. He was such a fabulous mentor. I couldn't imagine doing anything else with my career. You write this piece. We loved this piece when you submitted it, myself and the editorial staff. And you write it from the perspective of someone who has recently finished fellowship, which you have. And you write in particular that- this one quote, "During my first year as an attending, I had braced for the steep learning curve, the finality of being the decision maker, the quiet hours at night when treatment decisions still played in my head. What I hadn't prepared for was the weight of uncertainty." It's a great line. So now that you're on the other side of training, what do you think could have prepared you better for the weight of uncertainty? Dr. Sondos Zayed: I had such wonderful mentors throughout my training, and so they were fantastic and I learned so much from them, but sometimes it just took having to be the final decision maker for me not to have to have the security of somebody to just turn back to immediately after a patient encounter, for example, and be like, "Oh, my supervisor can answer this question," or, "Here are my thoughts, but my attending can also join in the discussion," or give their thoughts as well. So that sort of cushion is no longer there. And so when I'm in the room by myself making those decisions with patients, nothing can really prepare you for that. You just have to go in and then do it yourself. Mikkael Sekeres: There is a safety net to training by design and thank God there is, right? Where we can always turn to somebody more experienced than us to answer those hard questions or to know what to do. And that's what's pulled out from under us when we become attendings, when we become the final pathway, when people suddenly turn to us and say, "Okay, what are we going to do here?" or, "What's the answer?" Did anybody during your training model "I don't know"? So did you see your own attendings say "I don't know" to patients and see how that played out? Dr. Sondos Zayed: Not as much, and I think there's a culture in medicine where when people walk into that room, they're hoping that you have all the answers, and you don't want to disappoint them. And so sometimes what we do is we rely on like the evidence and the data and the numbers that are in the literature to answer questions that the patient is asking in an absolute way but we answer it in a probability or a percentage or, "Most likely this will happen," or, "These are the potential, you know, this is the median overall survival," or, "Progression-free survival," or, "This percentage of people have this toxicity," for example. And so it's easy for us to fall back on that cushion of, "These are the numbers and the evidence." And that's what I saw modeled most frequently. But when I started practicing as an attending, what I realized is that when a patient comes in and they sit in front of you, they ask, "How long am I going to live?" What they're asking about is how long they specifically are going to live and not what the median survival in X study is telling us that that's how long they most likely would live, just as an example. And so what I had to do, when I'm speaking to patients, I kind of separate those two concepts where I start with, "I don't know, because I don't have a crystal ball, and your circumstances and how you respond to treatment is something that I can't predict before anything has started. And it's it's just I really don't know. But what I can say is on average in this study, this is what we see, and there's a 95% confidence interval, and most people fall within that.” And so I separate their immediate outcome with the data that we have. So that- because sometimes when I say, "Oh, your median survival is one year," they hear, "I'm going to only live for one year." And then you always have these patients that come through and be like, "You know, they told me I only had six months to live, but here I am two years later." And really it is again, we live in a world of probabilities and confidence intervals, but for the patients themselves, this is their life. Mikkael Sekeres: Yeah. One of the aspects of your essay that I really liked is the title, "The Power of ‘I Don't Know’" because saying, "I don't know," actually does have some power to it. And I've seen this demonstrated in a couple of different ways. I had a boss once who we'd all be in a meeting, and someone would ask a question, and the boss would say, "I don't know." And he said it in a way where one reaction from other people in the meeting could have been, "Oh, how could he be such an idiot and not know the answer to this?" But what wound up happening is people reacted to it by saying, "Gee, if he doesn't know, then it's okay that I don't know also. And maybe if he doesn't know, that means that maybe I thought I knew, but maybe I really don't know as well as I should." And it makes you kind of redouble your efforts to understand whatever's being communicated in the meeting. So I always thought that there was this power in saying, "I don't know," in meetings, but you bring up the power of “I don't know" in patient interactions. So tell me what is the power in saying, "I don't know," to a patient? What is it that that conveys to a patient and how does that affect the relationship that you have with your patients? Dr. Sondos Zayed: The way that I have learned to see it over the last year and a bit is that when I say, "I don't know," what they hear is honesty, and they hear that, you know, I'm not going to pretend to make up a number or make up an outcome when I'm not sure of it. And they hear that physicians are also very human. And it makes us seem much more approachable. And so what I noticed started happening when I admitted there were things that I don't know where sometimes there was no way of me knowing answers to some of their questions is they started seeing the human aspect of what we do every day. And then they started wanting to share more of their human experience and what really matters to them the most. So they started sharing, "Okay, well, if if the physician doesn't know, these are the things that are important to me. I want to be able to walk my daughter down the aisle in a few months. I want to be able to play with my grandchildren. I want to be able to be at home when the end comes." So it opened this discussion where my admitting that I don't know is a form of vulnerability, and I say that, and that allowed them to be a bit more vulnerable with what it is that they really wanted to achieve in the time that they had left. And it closed gaps where the physician is seen as not somebody who necessarily has all the answers, but somebody who when they don't know, they will tell us, and what they can tell us in terms of what they can offer for treatment, what possible outcomes are, what they can expect, all these things that they do know, they will tailor to what it is that is important to them. I felt like it was more of a bridge than it was scarier. It built bonds and it built bridges as opposed to them feeling that they're not being cared for. Mikkael Sekeres: Sounds like it establishes an environment of honesty and that leads to trust in the relationship between you and your patients. Dr. Sondos Zayed: Yeah, I would agree. Mikkael Sekeres: When people ask, "How long do I have to live?" it also, what I've learned from communications experts in oncology is that it gives us an opportunity to say, "Why do you ask?" And that can lead to a discussion of goals and what are we working toward here and make sure that we're on the same page with what our patients' expectations are as well. Dr. Sondos Zayed: Absolutely. Mikkael Sekeres: You talk about vulnerability with your patients. I wonder if you could talk a little bit about our roles as doctors and nurses and pharmacists, when is it expected that we provide a concrete answer and when is it okay to be vulnerable and say, "I don't know"? Dr. Sondos Zayed: That really depends on the situation. So I feel like when we should be able to provide concrete answers when we have the evidence and information to be able to answer them in a way that the patient requires. When we don't have that evidence and we don't have that clear picture of, "Oh, this is obviously the answer," based on our usually at least decade plus of training, then being able to admit, "I don't know," actually opens the doors for discussion, anchor that "I don't know" into something more concrete. So when you say, "I don't know," you don't kind of leave it in the air, that can certainly be cause for anxiety. But sort of taking that, "I don't know," and then framing the subsequent part of that conversation about what are the things that you do know about the question that they asked and how you can support them by giving them the information that you are confident about. Mikkael Sekeres: Has it ever backfired on you? Dr. Sondos Zayed: Not yet, but I've got many years of practice to come. Mikkael Sekeres: It has on me. I don't know that I would say maybe "backfired" is too strong, but there are times when I've said, "I don't know," and my patients have said, "But you're the doctor. You're supposed to know." Dr. Sondos Zayed: Mm-hm. Mikkael Sekeres: And I found that creates an opportunity to talk about expectations and where the limits of our knowledge are and where we can provide estimates and ranges, but can't give people a precise answer. Dr. Sondos Zayed: Mm-hm. Mikkael Sekeres: In your essay, you write, "When the reality doesn't match the implied promise, patients don't lose faith in the data, they lose faith in the person who gave it. That is how trust erodes." I thought that was just very elegantly phrased. Has that ever happened to you where you've provided an estimate maybe of a potential outcome and things didn't work out that way for the patient? Dr. Sondos Zayed: Yes, that has, and I think most physicians can sort of share that experience, to be honest, where it'll come back and say, "Well, actually I didn't I didn't have that side effect," or, "Actually I lived longer than you'd anticipated," for example, or like, "It didn't have that outcome." And I think that's where the idea of saying, "I don't know," actually came from, where I I realized that a lot of the times when we turn back to the data, patients hear it as like, "Oh, this is the concrete truth of what exactly is going to happen to me." But to sort of distinguish between, "Oh, this is what we see in the data versus what exactly is going to happen to you," making that distinction is what by saying, "I don't know," is what has helped me try to prevent these outcomes from happening, or prevent the erosion of of trust by sounding maybe overconfident with specific things that mean so much to them. So- and this is their life, right? They come in and they hear these things and they remember them forever. And we see so many people on a daily basis and sometimes we don't keep track of every single word we've ever said. And so- but these words have so much weight to them. And so distinguishing between what we see in and saying, "I don't know," and then, "Here's what I do know," and saying that for them specifically, it's almost impossible to predict, it really helps prevent, in my opinion, the erosion of of that trust so that you don't have somebody saying, "Oh, actually you were wrong afterwards," or misunderstanding or misinterpreting what is that we're trying to convey by giving that information. Mikkael Sekeres: And that's a great place to end a great discussion and a wonderful piece. It has been such a pleasure to have Dr. Sondos Zayed, who is a radiation oncologist at the Ottawa Hospital and Assistant Professor at the University of Ottawa, Canada, to discuss her essay, "The Power of ‘I Don't Know.’" Sondos, thank you so very much for submitting your article and for joining us today. Dr. Sondos Zayed: Thank you so much. Mikkael Sekeres: If you've enjoyed this episode, consider sharing it with a friend or colleague, or leave us a review. Your feedback and support helps us continue to have these important conversations. If you're looking for more episodes, follow our show on Apple, Spotify, or wherever you listen, and explore more from ASCO at . Until next time, this has been Mikkael Sekeres for JCO Cancer Stories: The Art of Oncology. 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: so you never miss an episode and leave a rating or review. Guest Bio: Dr Sondos Zayed is a Radiation Oncologist at The Ottawa Hospital and Assistant Professor at the University of Ottawa, Canada. /episode/index/show/aoopodcast/id/40503685

When Cancer Becomes a Headline: Reflections from the Clinic 03/10/2026

When Cancer Becomes a Headline: Reflections from the Clinic Listen to JCO OP's Art of Oncology Practice article, "” by Dr. Carlos Stecca. The article is followed by an interview with Stecca and host Dr. Mikkael Sekeres. Dr Stecca reflects on the impact of the public illness and death of Brazilian singer and actress Preta Gil on his patients with colorectal cancer and on his own practice as a medical oncologist. TRANSCRIPT Narrator: , by Carlos Stecca, MD Dr. Mikkael Sekeres: Welcome back to JCO's Cancer Stories: The Art of Oncology. This ASCO podcast features intimate narratives and perspectives from authors exploring their experiences in oncology. 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 have Dr. Carlos Stecca, a medical oncologist at Evangelical Mackenzie University Hospital, to discuss his JCO Oncology Practice article, "When Cancer Becomes a Headline: Reflections From the Clinic". Dr. Stecca and I have agreed to call each other by first names. Carlos, thank you for contributing to JCO Oncology Practice and for joining us today to discuss your article. Dr. Carlos Stecca: So great to be here. Thank you so much for having me. Dr. Mikkael Sekeres: I wonder if we could start off by asking you to tell us about yourself. Where are you from and what led you to this point in your career? Dr. Carlos Stecca: So I am Brazilian. I was born in Brazil in a small town in the south of Brazil, and I did my medical training all in Brazil. So I did medical school here, internal medicine, and medical oncology. My residency period ended in early 2018. I did my residency at the AC Camargo Cancer Center, which is in Sao Paulo. And then right after that, I moved closer to my parents to start my journey as a medical oncologist. And I stayed here in the south for two more years. And then I was lucky enough to be accepted for a clinical research fellowship in genitourinary malignancies at the Princess Margaret Cancer Center. And I had the pleasure to work with Dr. Kala Sridhar for two years. So this was during the pandemic, so 2020, 2021. And then right after that, I moved back to Brazil. And I've been here for the past four years working as a medical oncologist specialized in genitourinary malignancies. But also, well, unfortunately here in Brazil most of us cannot do only one site, so we have to do a little bit more, so I'm doing gynae and GI as well. And in a few days, I'm moving back to Canada. I was lucky enough again to be accepted for a position at the University of British Columbia, so I'm moving in a few days. Dr. Mikkael Sekeres: Oh, my word. We caught you just in time then. Dr. Carlos Stecca: Yeah, yeah. I'm moving in four days now. Dr. Mikkael Sekeres: I can't imagine what it's like to be going between those extremes of weather from Canada down to Brazil. Did your teeth crack when you did that? Dr. Carlos Stecca: Something like that. Yeah, it was like, I moved in December. So in December we have summer here in Brazil, and it was like 35, 40 degrees Celsius when I left Brazil at the airport. And when I arrived, it was close to minus 20 when I went to Toronto. Yeah. Dr. Mikkael Sekeres: Oh, my word. Dr. Carlos Stecca: It was rough. Dr. Mikkael Sekeres: Well, those of us who live at or near the Southern Hemisphere, I will tell you, I've started to wear puffy jackets and snow caps when it drops into the 60s. Good luck with reacclimating to Canada. I wonder if we could talk a little bit about the story that sparked this terrific essay. It was so interesting. The Brazilian singer and actress Preta Gil died of rectal cancer in July of 2025 at the age of 50. And she went public with her diagnosis. What is it that she communicated to the public about colorectal cancer? Dr. Carlos Stecca: So she was very open about her diagnosis since the beginning. So this was very interesting. She is very famous here. She had tons of followers on Instagram and social media, and she was very outspoken about her diagnosis since the first beginning. So she was diagnosed with an early stage disease, and she did a great job raising awareness for this condition, for colorectal cancer. She had a beautiful journey discussing the specifics of her case. Dr. Mikkael Sekeres: So she talked both about her diagnosis and some of the treatments she was undergoing, but also about symptoms of cancer, right? Dr. Carlos Stecca: She really engaged in this discussion about her diagnosis and how she found out about her cancer. So rectal bleeding, this was disclosed in her stories on Instagram, and so she was very open about this. And it really helped people understand the condition, and it really increased the number of screening tests that Brazilians were doing. And of course, we saw this increasing uptake of the screening tests, which was amazing. Dr. Mikkael Sekeres: In a way, I think she did a real public service, I think, both for early detection of colorectal cancer with symptoms, also for screening, so asymptomatic people who would undergo colonoscopies, and also demystified a little bit the treatment of colorectal cancer. In the US, we saw a similar phenomenon when the actor Chad Boseman of Black Panther movie franchise fame died of colorectal cancer in 2020 at the age of 43. These deaths have also sparked an international conversation about cancer in younger adults. Are you seeing that in your clinic? Dr. Carlos Stecca: Yes, definitely. We're seeing many more cases of cancer diagnosed in the younger population, right? So yeah, this discussion was very important to have, not only because the screening tests increased in patients after the age of 50 years old without any symptoms, but also raised awareness for those symptoms that should trigger the proper investigation. Dr. Mikkael Sekeres: I wonder if you could speculate a little bit about why it is that we're seeing more cancer in younger adults. Do you think it has anything to do, for example, with diet and people eating more ultra-processed foods? Is it a phenomenon? I've even heard people talk about microplastics and whether that could be contributing. Also, recently, there was an article that came out that speculated that while we're seeing more cancers in younger adults, we're not seeing more deaths in younger adults, so we may just be picking these up earlier as more people are going to be screened or for additional testing at a younger age. Dr. Carlos Stecca: Yeah, I think so. I think this is definitely the case. I think younger adults are eating more processed foods, and we know that this is an obvious risk factor for colorectal cancer and other cancers as well. And maybe obesity as well, we are seeing this as a pandemic now in the world, right? So we are seeing this especially in developing countries. And here in Brazil, of course, we are seeing this as a phenomenon. Dr. Mikkael Sekeres: It's so fascinating. I feel like we won't really know the answer about the uptick in cancers in younger adults for years until some of the data settle out, including the data about people during the COVID pandemic not going for screening and testing as often and whether we're now starting to see the downstream effects of that. Dr. Carlos Stecca: For sure, I think this is- well, during the pandemic I was in Canada, but shortly after the pandemic was coming to an end, I came back to Brazil, and I saw that. I saw that a lot of patients came to the clinic with more advanced cancers because they missed those opportunities of being seen by a physician during the pandemic, because of course, for obvious reasons, people were not coming to the clinic. And we saw that, a huge number of patients being diagnosed with late-stage disease because of that. Dr. Mikkael Sekeres: It's fascinating. There's a named phenomenon called the Angelina Jolie effect. I don't know if you remember following the actress's 2013 opinion piece about genetic testing for hereditary cancers such as BRCA1 and following her prophylactic mastectomy. She is a carrier of a mutation. There was a wave of testing that occurred thereafter. So some good can come from celebrities going public with their cancer diagnosis. Dr. Carlos Stecca: Oh, definitely, definitely. I think that more good can come from their diagnosis and them being verbal about this than the downsides. Of course, the positive side of it is definitely outweighing the negative effect. Dr. Mikkael Sekeres: You write a really thoughtful essay. You mention downsides, and there can be some downsides. One of the things you wrote in your essay was, "Yet for others already living with colorectal cancer, the same story had the opposite effect. Instead of empowerment, it fueled anxiety, guilt, and resignation. Some patients grew silent, fearing their treatment was futile as they compared themselves to a celebrity who had access to the best hospitals, specialists, and resources, and still passed away. Others questioned why they had not caught their cancer earlier, internalizing blame." Can you talk a little bit more about some of the unintended consequences of a celebrity who goes public with his or her cancer diagnosis? Dr. Carlos Stecca: That was exactly it, right? I was witnessing this in my clinic. I work in a public hospital here, and I would see those patients coming to me and voicing their concerns about their diagnosis, colorectal cancer, that was now in the spotlight because of that famous person that battled with colorectal cancer and unfortunately passed away after two years of starting her journey. And that was something quite difficult for the patients because, as you mentioned, and as I wrote in the text, some of those patients were in the public system and they were comparing themselves, comparing their diagnosis with the diagnosis of someone who had endless resources. And in fact, she even went to the United States and took part in a clinical trial. She participated in a clinical trial. And yet she was not able to overcome this diagnosis, and sadly she passed away. So, most of our patients were coming to the clinic and voicing their fears, like, “If even she couldn't get through this, how can I? I'm a simple person and I'm here in this world of limited resources.” And here in Brazil, we do have the public system and the private system, and there is a huge gap between what we can do in one system and another. That was a concern that they voiced. Dr. Mikkael Sekeres: I'm sorry she passed away. How did you deal with that? So how did you respond to patients who said, “Gee, if this famous actress with unlimited resources dies from her cancer, what hope do I have?” Dr. Carlos Stecca: Yeah, so I think this is very difficult, right? And this is something that I was learning to understand now. Because as you mentioned, Chadwick Boseman and Angelina Jolie, we heard of those stories, but I never felt that this would be impactful in my clinic, that there would be patients voicing their concerns about their diagnosis being in the spotlight. And this is something that happened to me now. I would often see those patients, and I started to think about the downsides of a cancer being on a headline for those already living with cancer, and already living with that cancer and having their cancer in the spotlight. And so that was something that I needed to hear and address their concerns more actively than before, right? So this is something that is really important. And sometimes it is as important as discussing toxicity related to chemotherapy or other things related to the treatment itself. But addressing their concerns, it would be a way to alleviate the burden that the patients are experiencing from that. Dr. Mikkael Sekeres: So what would you say to them? If somebody said to you, "How can I do well when this famous actress didn't do well?", what would you say? Dr. Carlos Stecca: The first thing is to talk to the patient that every diagnosis is different. So we do have differences in staging, we do have differences in biology of the tumor. And as we study more those diseases and every type of cancer, but here, especially colorectal cancer, we are seeing that those differences are very important in the treatment and they will be part of the prognosis as well. So no disease is the same as other disease. So your experience is unique. So your diagnosis is in a certain way unique. Your treatment might be different, right? Dr. Mikkael Sekeres: I like how you personalized that for each patient. I really love how you end this essay. You write, "In those quiet moments after a headline, when fear enters the exam room, my responsibility is clear. I must not only prescribe treatment, but also restore perspective, dignity, and courage. Sometimes that is the most difficult, yet most essential part of being an oncologist." I remember, Carlos, one of my patients once described what we do as being almost pastoral. He himself was a minister and said this. And an important part of our job is to provide that context, but also a space where people can feel forgiveness for what they perceive as their fault. I wonder if you could reflect on that a little bit. How is it that, it almost sounds like it's too extreme, but we provide a sanctuary where patients can forgive themselves for the guilt they've been carrying around. Dr. Carlos Stecca: Yeah. No, I think this is very important. As medical oncologists, we are more than just physicians. We become friends with the patients, right? So most of the time I do create this relationship, this strong bond with the patient, because I worked as a family doctor before, so I treated patients very intimately as well. But nothing compares to being an oncologist now, because I think that the emotional burden associated with the profession is extremely high. And it's very difficult for the patient, for the family. And so we become part of their families and part of their story and their journey throughout their whole journey with the cancer. So it can be very emotional. I think that it's much more than being a physician and treating patients and prescribing treatments and discussing the biology of the tumor. And it's much more than that. And I think that being an oncologist entails all that, entails being part of their story and engaging in an emotional journey that they are having with the cancer. Especially here in Brazil, I think that the diagnosis of cancer has always been challenging. And I think that a patient's experience is unique and addressing the emotional part of it is very important. Dr. Mikkael Sekeres: Well, what a beautiful way to sum up what we do. We become part of our patients' stories and journey, and they become part of ours, and I think that's why we write about it. It has been such a pleasure to have Dr. Carlos Stecca to discuss his essay, "When Cancer Becomes a Headline: Reflections From the Clinic". Carlos, thank you so much for submitting your article and for joining us today. Dr. Carlos Stecca: Thank you so much for having me. It was a pleasure. If you enjoyed this episode, consider sharing it with a friend or colleague or leave us a review. Your feedback and support helps us continue to have these important conversations. If you are looking for more episodes and context, follow our show on Apple, Spotify, or wherever you listen and explore more from ASCO at . Until next time, this has been Mikkael Sekeres for JCO's Cancer Stories: The Art of Oncology. 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: so you never miss an episode and leave a rating or review. Guest Bio: Dr Carlos Stecca is a medical oncologist at Evangelical Mackenzie University Hospital. /episode/index/show/aoopodcast/id/40314060

Mother's Grief: Loss Through the Lens of Motherhood 02/24/2026

Mother's Grief: Loss Through the Lens of Motherhood Listen to JCO's Art of Oncology article, "” by Dr. Margaret Cupit-Link, who is an assistant professor of pediatric hematology/oncology at Cardinal Glennon Children’s Hospital of St. Louis University. The article is followed by an interview with Cupit-Link and host Dr. Mikkael Sekeres. Dr Cupit-Link shares a pediatric oncologist's experience of a patient's death through the new lens of motherhood. TRANSCRIPT AOO 26E03 Narrator: , by Margaret Cupit-Link, MD, MSCI Mikkael Sekeres: Welcome back to JCO's Cancer Stories: The Art of Oncology. This ASCO podcast features intimate narratives and perspectives from authors exploring their experiences in oncology. 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 treat it is today to have joining us our third place Narrative Medicine Contest winner, Maggie Cupit-Link, an assistant professor of Pediatric Hematology Oncology at Cardinal Glennon Children's Hospital of St. Louis University to discuss her Journal of Clinical Oncology article, "Mother's Grief." Both Maggie and I have agreed to call each other by first names. Maggie, thank you for contributing to the Journal of Clinical Oncology and for joining us to discuss your winning article. Maggie Cupit-Link: Thank you so much for having me and for choosing my article. It's an honor to get to speak with this group. I know a lot of our listeners have a lot in common with us in our profession, so I'm excited to be here. Mikkael Sekeres: We're excited to have you. You are such a terrific writer. Tell us about yourself. Where are you from, and walk us through where you are at this stage of your career? Maggie Cupit-Link: I grew up in a small town in Mississippi called Brookhaven, and I ended up attending college in Memphis, Tennessee, which is important to note because I was a pre-med student when I got diagnosed with childhood cancer, Ewing sarcoma, at the age of 19. And so that really shaped my career goals. And I was treated at St. Jude Children's Research Hospital, which is very formative as well, given that I was surrounded by childhood cancer patients. I ended up doing my medical school at the Mayo Clinic Medical School in Minnesota, which was very cold for me but a wonderful experience. And then went to St. Louis to WashU, St. Louis Children's for my residency, and then back to Memphis for my fellowship at St. Jude. But now I'm back in St. Louis at the other hospital, Cardinal Glennon, which is affiliated with St. Louis University. And my husband's originally from St. Louis, so it was always a dream of his to be back here. And once I ended up here, I really have loved St. Louis as well. So this is home for us and our two babies who are ages one and two, and they are one year and one day apart exactly. Mikkael Sekeres: Oh my word. Well, you are definitely in the thick of it, aren't you? Maggie Cupit-Link: It's a very busy, chaotic life, but I'm very grateful. And so that makes it worth it. Mikkael Sekeres: That sounds fantastic. Well, I'm calling in from Miami today, so believe me, the thought of being in Rochester, Minnesota is not very appealing in mid-February. Maggie Cupit-Link: I believe that. I'm glad I'm not there right now. Mikkael Sekeres: Gee, I didn't know about your history of having cancer yourself. What was it like to return for fellowship at the place where you yourself were treated? Maggie Cupit-Link: That was an incredible experience for me. It was very emotional as well. I remember the first day of fellowship getting a tour and crying throughout the tour. More tears of joy, but it was, it was really surreal. It was really special. And I got to learn from some of the doctors who treated me, which made it really special as well. I'm really glad I got to train there and to be at a place with such a large volume of pediatric oncology patients was a really great learning experience. Mikkael Sekeres: I wonder, infrastructures, buildings change over a few years, particularly in medical centers. Was there ever a moment when you were talking to a patient who was sitting in the same chair where you were sitting when you were a patient? And was that something that you were open to sharing with people? Maggie Cupit-Link: All the time, on all accounts. Yes. The infrastructure has changed. It continues to grow significantly, but the clinic hadn't changed at that time. I think it will in the next couple of years. But the solid tumor clinic where I was treated was exactly the same. And there were many times where I took care of sarcoma patients and Ewing sarcoma patients who were teenagers as I had been in the very same rooms and times where I learned from my own oncologist as he was teaching me and training me. So it made it really special. It made empathy a big part of my experience. And I think it is for all of our experiences in oncology in particular, but I think that empathy has always been a huge part of my job and something that comes to me naturally, which is a gift. But as is sort of alluded to in my piece that we're discussing today, can be difficult at times. Empathy can also sometimes be a curse when it's hard to turn off, and that's been something as a mother now that I've really had to learn to cope with is like figuring out when my empathy might not serve me in moments and might not serve the patient in moments, and when it is an asset and a gift. Mikkael Sekeres: Empathy at the deepest possible level, having walked the same path your patients have walked as well. Really a remarkable story, Maggie. Maggie Cupit-Link: I'm very blessed to get to be alive and well, but especially to get to have a job that's so meaningful to me and hopefully can share my experience in a way that helps my patients. Mikkael Sekeres: And you share it through writing as well. When did you start writing narrative pieces? Maggie Cupit-Link: I started writing a lot when I was a cancer patient for more like a journal experience. And I had a CaringBridge page, which is one of these social media pages where families update their friends a lot on what's going on. And I started journaling daily, and then ended up publishing a book of my experience as a patient. I had also done a lot of writing of letters to my grandfather who's a retired professor of Christian philosophy because during my illness, I was really struggling with my faith and having a lot of questions as we all do when encountering children with cancer, "Why? Why God?" And so the book is actually called Why God? Suffering Through Cancer Into Faith, and it's a collection of narratives that I exchanged with my grandfather. And his part is more philosophical, and mine is more raw and emotional and expressive of the grief that I was feeling at the time as a patient. So that was the first big time I did narrative medicine, but I've found myself continuing to do so as a way to cope and process things that I go through. And the most recent one before the one we're discussing today was a piece about fertility that was published in JCO Cancer Stories and also I got to do the podcast for that piece. And that was about my experience losing fertility as a patient and how that has impacted what I tell patients about fertility and how I counsel them about possible fertility loss. And the plot twist there is that I actually have two miracle babies that I birthed for some reason after 13 years of menopause. So now I'm not infertile, but I'm very passionate about fertility as well. Mikkael Sekeres: Well, I remember that essay. I also remember how impactful that was to a lot of people who read it and how helpful it was. And gave a lot of people hope. Maggie Cupit-Link: I think hope is very, very important and necessary in the realm of cancer. Mikkael Sekeres: My word, you have so much that you could potentially share with your patients on their journey. Have you also been open to sharing your faith with them? Maggie Cupit-Link: Absolutely. I am. I think that it's something I'm really cautious not to push on anyone, but whenever patients bring up faith and want to talk about that or when they introduce that as a topic and make it clear that that's something that they are thinking about, then I'm definitely very open about that too. Mikkael Sekeres: Well, that must be a comfort to them. Maggie Cupit-Link: I hope so. It's a comfort to me as well. For me, I don't know how I would do this job and lose patients and children to death if I didn't believe in something more. Mikkael Sekeres: It's beautifully said. In this essay, you make a close connection to your patient and his mother when you write, "I imagined my own son contained in a hospital room, attached to an IV pole, vomiting from chemotherapy. I could feel the warmth of his skin against mine and the weight of his body on my chest. And as I looked back at Tristan's mother, I could only support her decision to hold her baby." What is the importance of this connection to patients, and are there any downsides? In other words, you know, in medical school, we're often taught to keep a distance, or there was an essay I wrote with Tim Gilligan, who's a GU oncologist and this incredible communicator, where we wonder if all the communication classes we're exposed to in medical school actually undo our natural communication and our natural connection because we figure, "Gee, if we have to take all these classes on communication, maybe we've got to communicate differently." What is the importance of this connection to patients, and are there any downsides? Like, should we keep a distance or not? Maggie Cupit-Link: I don't know if we should, but I know that I can't. This is my gift and my curse. I think that taking care of someone with a sick baby, especially as a parent, is so human and so full of emotion that it's not possible for me not to feel that connection. Now, I do think there's a point at which I have to be careful that what I'm doing and what I'm expressing doesn't make it harder for them. I think it's important for them to know that I feel for them and that I am having these feelings, but I don't want it to become about me when I'm trying to help them. So I once in one of these medical school situations was told that the moment the family begins to comfort me might be a moment that I've known I've gone too far. And so I think that's a rule of thumb I think about is like, if I'm crying in this moment with this family, does that make them feel loved, or does that make them feel like they need to worry about me? And I think most of the time it just makes them feel loved, but that's sort of the tension there. I think when it comes to me too, I've been unable so far to put up boundaries to protect myself emotionally. I don't know that I'm capable of that, but more importantly, I don't think that's authentic for me. And so I don't do that. I'm trying to process and grieve so that I can cope and continue to be the doctor and person that I am. But I refuse to put up emotional walls because I don't think that will serve the patient or be authentic to who I am as a person. Mikkael Sekeres: You bring up a couple of really important notions, and the first is authenticity, being true to ourselves. And if we're not true to ourselves, our patients will see through that and wonder if we're not being true to them. And also having our antennae up to get the pulse of the room, to see how people are reacting to what we're doing and making sure that we're serving our patient's needs more than we're serving our own needs when we're actually in the clinic room with our patients. Maggie Cupit-Link: Definitely, I agree. And and those scenarios in medical school, I remember just thinking to myself that it didn't make a lot of sense to me and that I was lucky that this class wasn't meant for me, that I'll just do what I feel is appropriate. And I always did really well in the simulations, but I had no way to articulate why I knew what to do. It just, for me, I was so lucky that part came naturally, and I think it does in many of us who find medicine as a calling. But I don't know how to teach or learn that. Mikkael Sekeres: Well, you've seen it from the other side as well. I mean, you strike me as being a naturally empathic person and someone who's tuned into other people's emotions. But you've also been there. You're more tuned in than I am, having been someone who's had cancer. I've certainly had close family members who've had cancer, my mom has lung cancer, for example. So I've been in the role of somebody in the room who's supporting somebody with cancer, but I haven't myself had cancer the way you have. Maggie Cupit-Link: It definitely impacts my empathy. And I think that I was surprised after becoming a mother how much that also changed things for me and impacted my empathy further. Until you're a parent, you really don't know the depth and intensity of your love for a child or a person. And it was only then that I realized how heartbreaking it might be to lose a child. It's very difficult to suppress that empathy. And that's when it might not be helpful sometimes is when I'm leaving work and thinking about someone who lost their baby and knowing that no matter how much I empathize with them, it's not going to fix it. It's been the first time in my career and maybe my life where I've had to tell myself that maybe it's okay not to have empathy in this moment. Like, maybe I should turn it off for a little bit so that I can relax and enjoy my baby. Mikkael Sekeres: My God, it's such an interesting perspective. I think as oncologists, we have this different perspective on illness and, and if we're smart about it, if we're really focused and in the moment, we appreciate the aspects of life and realize how precious they can be. And that can be a lovely thing and something we pass on to our kids. I will tell you, my own children have accused me of brushing off some of their maladies with the refrain, "Well, it may hurt you, but it's not leukemia." Maggie Cupit-Link: I've heard that's common with physician's children, but it takes a lot to get a rise out of the parent. Mikkael Sekeres: You write at one point in the essay, "At first, I believed that I had no right to grieve in this way, that it was his mother's grief, Tristan's mother, not mine. I reminded myself that I was not Tristan's mother. I did not give birth to him or name him." Now, we recently published an essay about grieving called "Are You Bereaved?" by Trisha Paul, where she also wonders whether we as oncologists have a right to grieve. What do you think? Do we? Maggie Cupit-Link: I have to note that Trisha and I were co-fellows together in our training, so I'm happy that you mentioned her. And I need to go read that essay. I haven't read that one, so I will. It's weird to wonder if we have the right to grieve. My grandmother is a psychologist, and I remember as a child saying like, "I know I shouldn't feel this way, but" about some random thing. And I remember her saying, "Feelings aren't ‘should’. Feelings just ‘are’." So like, maybe it doesn't matter if we should or shouldn't, but if we are grieving, we're grieving. I think in some ways it feels like I don't have the right to grieve because I have this wonderful, happy life. And this can be true of survivorship as well when I'm taking care of many children who won't get to be survivors, especially because I care for a lot of sarcoma patients. But I often wonder like, “Am I allowed to be this happy,” or “am I allowed to not be happy because there's so much grief in their lives?” So it's hard. I feel this tension often like, I'm not allowed to grieve as much as this mom, but also I better be really, really happy because I'm okay and my baby's okay. It's hard when we compare our emotions to other people's who are going through different things. But it, but it's hard not to wonder, like, "Am I allowed to feel this way?" "Am I supposed to feel this way?" For me, that's when writing is helpful. Just writing down what I feel in great detail helps me move through the feelings, I guess. Mikkael Sekeres: Part of the processing of it. You described the code call for your patient vividly. You know, you draw us as readers into your essay and into that moment. We've all been in that moment. I remember when I was just talking to somebody about when I was in the intensive care unit, when I was a resident, and how at that time, a psychiatrist actually met with us every week to help us process what we were seeing in the intensive care unit, which was really remarkably forward thinking for how long ago I trained. Maggie Cupit-Link: That's really great. Mikkael Sekeres: How did you process it in real time and afterwards though? Maggie Cupit-Link: That day, even now, an aspect of me was dreading this conversation because I feel nauseated when I think back to that day, to that code, and I feel like I'm going to cry. And I don't feel like that in every code, but I think it was because of the parallels between the little boy and my baby. To note, my baby, Houston, he is a big, bald, fat faced baby with a binky in his mouth at all times, and Tristan was a fat, bald baby with a binky in his mouth at all times. And so even though there was a bit of an age difference, when I saw Tristan, I just thought of Houston, and I couldn't separate that. I feel often when I'm doing a lumbar puncture or running a code in real time on a patient, I can sort of dehumanize to the degree that's helpful where I just do what needs to be done and put aside the ick feelings. But with that child, in that code, I couldn't. And luckily I didn't have to do anything but stand there and tell them when to stop or just be supportive, but I felt sick. I felt like I couldn't do anything to help. I didn't feel like a doctor in that moment. I felt like a family member of that child. And that was really difficult. I was so lucky, and I don't know how much the piece reflects this, but the other doctor who was there, the other oncologist, is a mentor of mine who's older than me and wiser than me and very experienced. And I call her my ‘work mom’ lovingly. She was there, and she stepped in and helped me and checked on me and made me feel like I could handle things. It would have been much worse without her there. Mikkael Sekeres: We're fortunate when we do have our friends and colleagues to help process this because if you're not in this field, at that moment it's hard to understand just how deeply we can also feel the pain that our patients are going through. Maggie Cupit-Link: Absolutely. Mikkael Sekeres: And I do hope you'll retain that description of Houston for when you give the speech at his wedding because I'm sure he'd appreciate that. Maggie Cupit-Link: The big fat bald binky baby. Yes. Houston is now in his ‘mama phase’ where if I'm not holding him at all times, he fake cries, "Mama," until I do pick him up. So it's been exhausting physically, but I must pick him up. Mikkael Sekeres: I have to say it has been such a pleasure having you, Maggie Cupit-Link, join us to discuss your essay, "Mother's Grief." Thank you so much for submitting your article and for joining us today. Maggie Cupit-Link: Thank you so much for having me, and thank you for everyone for reading. Mikkael Sekeres: If you've enjoyed this episode, consider sharing it with a friend or colleague or leave us a review. Your feedback and support helps us continue to have these important conversations. If you're looking for more episodes and context, follow our show on Apple, Spotify, or wherever you listen and explore more from ASCO at . Until next time, this has been Mikkael Sekeres for JCO's Cancer Stories: The Art of Oncology. The purpose of this podcast is to educate and to inform. This is... /episode/index/show/aoopodcast/id/40215940

North Star: The Importance of Presence in Pediatric Oncology 02/10/2026

North Star: The Importance of Presence in Pediatric Oncology Listen now to the latest episode of JCO Cancer Stories: The Art of Oncology, North Star, by Dr Manuela Spadea. As a pediatric oncologist, Spadea shares a luminous, gut-honest reflection that reminds us that beyond protocols and outcomes, the deepest medicine is presence. TRANSCRIPT Narrator: , by Manuela Spadea, MD Mikkael Sekeres: Welcome back to JCO’s Cancer Stories: The Art of Oncology. This ASCO podcast features intimate narratives and perspectives from authors exploring their experiences in oncology. I am your host, Mikkael Sekeres. I am professor of medicine and Chief of the Division of Hematology at the Sylvester Comprehensive Cancer Center, University of Miami. What a pleasure it is to have joining us today Manuela Spadea, an assistant professor of pediatrics at the University of Turin in Italy and consultant oncologist at the Regina Margherita Children’s Hospital in Turin, Italy. We will discuss her Journal of Clinical Oncology article and second place winner in our Narrative Medicine Contest, "North Star." At the time of this recording, our guest has no disclosures. We have agreed to address each other by first names. Manuela, thank you for contributing to the Journal of Clinical Oncology and to our Narrative Medicine Contest, and especially for joining us to discuss your winning article today. Manuela Spadea: Hi Mikkael. Thank you for having me today. It is a pleasure and an honor being invited to speak with you. Mikkael Sekeres: No, the pleasure and honor is mine, I promise. You know, on these podcasts, I often like to ask our guests to tell us something about yourself. Where are you from, and walk us through your career and where you are right now. Manuela Spadea: Sure. I am from Italy. I work in Turin, where I work as a consultant pediatrician, a consultant oncologist, and also as an assistant professor of pediatrics. So my work is divided in these two duties: clinical duties on one hand and on the other hand, research and also teaching activities. I was drawn to choose pediatric oncology because this sits at the intersection of science and humanity, in my opinion, of course. I think that in pediatric oncology, we face different and several challenges, so we need to perform at our best in diagnosis, treatment, and whatever. But also, we are asked to not forget being human and to connect always with our children and their families. So it was basically this intersection, this connection between science, research on one hand, and humanity and heart on the other hand that led me to what I am today. Mikkael Sekeres: It is a fantastic explanation, and it is interesting how you have framed that, that there is an aspect of arts and humanities that you have found in focusing on pediatric hematology oncology. I do think that is more so than what we face in adult oncology. Manuela Spadea: I think that it is kind of different because if you think about our world and you think about a sentence, just putting the words ‘child’, ‘cancer’, and ‘death’ in the same sentence is very hard to think about. An adult is someone that has already had the chance and the gift to grow up. Mikkael Sekeres: Huh. It is an interesting perspective on it. Manuela Spadea: Yeah. A child is someone who is growing up and cancer stays in between his possibility to become an adult or not. Mikkael Sekeres: So the emotional burden right out of the gate of having a child with cancer and the possibility of death and the reaction to the compromise of a full life and the shortening of a full life automatically invokes that extra step of humanity and arts and how we have to approach a medical situation. I had not heard somebody put that into a concise phrase like that before, but you are absolutely right. When did you start writing narrative pieces? Manuela Spadea: I started writing when I was an adolescent, basically. And writing for me was a way to cope with whatever kind of feeling I felt during my life and during what I experienced as a human beforehand. But thereafter, when I became a clinician, writing was a way to cope with difficult shifts or hard nights in which you are asked to make very hard decisions as a clinician. Mikkael Sekeres: Often, either on this podcast or outside of it, doctors will approach me and want to get into writing and write a piece. And I think what many people do not realize is it is entirely possible later in life to start writing and to be very skilled at it. Many of our authors for JCO's Art of Oncology, though, have been writing their entire lives. It is not like they woke up one morning and decided, “Today I am going to write and I am going to write creatively.” We have all been working on it for decades. Manuela Spadea: Sure. Mikkael Sekeres: I wonder who are some of your favorite authors or are there writers who have influenced your own writing? Manuela Spadea: I would go with Paulo Coelho and Alda Merini. The reasons are very different because from Paulo Coelho, I learned how to express life as a journey and how to use and exploit, of course, symbolic images to express what we want to tell to our readers. From Alda Merini, I learned that pain and suffering are worthy of being mentioned and they still deserve a place in our writings. And she taught me how to collocate, how to find the right place and the right words to express pain and suffering that are parts of our life, of course, in pediatric oncology, of course, and are worthy being expressed in a manner that can reach our readers and touch them. Mikkael Sekeres: Well, as you have beautifully in your essay, I wonder if you could give us an example of a symbolic image. Manuela Spadea: For example, referring to my essay, "North Star." I chose the North Star because it is a very important image because it recalls to us about being a fixed point in a collapsing world. Basically, it is the world of our children that is collapsing and you are the one who represents this fixed point, this anchor. Mikkael Sekeres: So in your essay, which our entire editorial staff just loved, you write about, and I am going to quote you to you, which is always a little bit awkward, but here I go. You write about "the unbearable beautiful vulnerability of being a North Star for a child with cancer." And you write, "We never call it that, of course, not in rounds, not in protocols, but that is what we become: a fixed point in a collapsing sky. When nothing else makes sense, when numbers fail and outcomes blur, they look to us, not because we promise survival, but because we promise we won’t leave." Wow. I mean, that is an incredible collection of sentences. I wonder, in our relationships with our patients, when does that happen? When do we become a North Star? Manuela Spadea: I think that we become a North Star when our patients experience our humanity because they can trust us, not only for our degrees or our experience as clinicians, physicians, researcher, whatsoever. They trust us as a North Star when they feel that we are empathetic with them, when they know that we are feeling what they are experiencing. And so they leave their feelings to us, they share their feelings and they begin to connect with us. Mikkael Sekeres: When does that happen in the timeline of when we meet a patient? Is that something that can happen at our very first meeting where a patient may identify us or a member of our team as their North Star, or is that something that only happens over time as we build trust and build empathy? Manuela Spadea: It is definitely something that happens over time, day by day. Sometimes, but only occasionally, in my opinion, it can happen on the very first days, for example, the days in which we give them the diagnosis. But these are only small occasions because in the majority of cases, in my experience, the trust is built day by day. Mikkael Sekeres: There are also times that doesn’t happen, though, right? What are those scenarios like when either patients do not need us to be a North Star or when that deep connection never happens? Manuela Spadea: I think that these are very challenging situations. It can happen when outcomes blur, of course, because sometimes patients are experiencing too much suffering and they cannot share with us because they are not able of sharing with us their feelings. Sometimes it is just because you are not their North Star. Sometimes it is inexplicable, basically. “I do not trust you, not because you are not what I am looking for, but because I do not feel I can trust you. And I do not know how to explain because I cannot trust you.” Mikkael Sekeres: It is interesting. It is complicated to develop that relationship where you become a North Star. It sounds like what you are saying is it is a combination of trust, first and foremost, honesty, attentiveness to a patient’s needs, and time. Manuela Spadea:Sure. Mikkael Sekeres: In your piece, you write about a couple of patients you have treated, Eva and Cecilia, and you write, "In both Eva’s and Cecilia’s journeys, I was not the most experienced doctor in the hospital. I wasn’t the one who had written the protocol they were enrolled in or published the paper that dramatically shifted their chances. But I was the one who stayed, the one they chose. Incredibly, this is both a gift and a responsibility." There is a lot in those sentences, Manuela. You give patients the agency to identify us as a North Star, not us. Can you talk about that a little bit? Manuela Spadea: I think that there is a word in pediatric oncology that could be used as recurrent. And this word is ‘impossible’. Why I chose this word? Because we live impossible diagnosis. Let’s be honest. Impossible diagnosis, impossible suffering, impossible losses. When you face the impossible, being a North Star without being burned out by this, it is accepting that you are going to face uncertainty just being present. Because you are not the one that will change the outcome, or you can't be sure that that child will have the chance to survive. So if you give the possibility to face the uncertainty, being sure that whenever it goes, you can just be present for your patient and remember every day to your patient that you are there for them. So basically you win. And on the other hand, you also need to protect yourself because being a North Star is a responsibility, as I wrote. And a responsibility can be overwhelming for the one who is responsible for that child. So in that case, the only thing that can protect you is taking the part of being a North Star with boundaries. So you should also try to maintain your objectivity as a clinician and protect that objectivity that allows you to also serve as a good clinician. Mikkael Sekeres: So I wonder if I could follow up on that a little bit. It is a lot of work to be a North Star, isn't it? I mean, we have to choose our words and our actions so very carefully when we are in a room with a patient and that patient's family. Do you think serving as a North Star contributes to burnout or is it actually the opposite? It keeps our work vibrant and real? Manuela Spadea: Good question. I think that it is both, indeed. I think that burning out comes not by being a North Star, but by being a North Star in isolation, without caring about yourself, without finding a way to cope with your grief, with your sense of fear because we are human, so it is basically we experience these feelings. I mean, if we do not have a way to cope and to protect our feelings, we can absolutely go into burnout. On the other hand, it can be very important thing for our work because it can give our work the possibility to be vibrant and real because we are allowed to take the journey of our patient in a moment in which their journey is very unbearable. This is also not only a responsibility, but also a very important place that we have in their lives. This is very beautiful for me. This is astonishing because we are allowed to enter our patients' lives in a very difficult moment, and we can walk with them. Basically, being present and walking through what cancer journeys reserve for them. Mikkael Sekeres: Well, I think that is a lovely place to end our podcast. What a real pleasure it has been to have Manuela Spadea, who is an assistant professor of pediatrics at the University of Turin, Italy, and consultant oncologist at the Regina Margherita Children’s Hospital in Turin, Italy, to discuss her essay, "North Star." Manuela, thank you so much for submitting your article both to JCO and to our contest, and for joining us today. Manuela Spadea: Thank you, Mikkael. It has been an honor to share these stories with you. Mikkael Sekeres: If you have enjoyed this episode, consider sharing it with a friend or colleague or leave us a review. Your feedback and support helps us continue to have these important conversations. If you are looking for more episodes and context, follow our show on Apple, Spotify, or wherever you listen, and explore more from ASCO at . Until next time, this has been Mikkael Sekeres for JCO Cancer Stories: The Art of Oncology. 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: so you never miss an episode and leave a rating or review. Guest Bio: Dr Manuela Spadea is an Assistant Professor of Pediatrics at the University of Turin, Italy, and Consultant Oncologist at the Regina Margherita Children’s Hospital, in Turin, Italy. /episode/index/show/aoopodcast/id/40050220

A Chance to Heal with Cold Hard Steel: The Fine Surgical Line Between Healing and Harming 01/27/2026

A Chance to Heal with Cold Hard Steel: The Fine Surgical Line Between Healing and Harming Listen to JCO's Art of Oncology article, "” by Dr. Taylor Goodstein, who is a fellow at Emory University. The article is followed by an interview with Goodstein and host Dr. Mikkael Sekeres. Dr. Goodstein shares a story about surgery, grief, and being courageous in the face of one's own fallibility. TRANSCRIPT Narrator: , Taylor Goodstein, MD Mikkael Sekeres: Welcome back to JCO's Cancer Stories: The Art of Oncology. This ASCO podcast features intimate narratives and perspectives from authors exploring their experiences in oncology. I am your host, Mikkael Sekeres. I am Professor of Medicine and Chief of the Division of Hematology at the Sylvester Comprehensive Cancer Center, University of Miami. Joining us today is Dr. Taylor Goodstein, urologic oncology fellow at Emory University and our first Narrative Medicine Contest winner, to discuss her Journal of Clinical Oncology article, "." Dr. Goodstein and I have agreed to address each other by first names. Taylor, thank you for contributing to the Journal of Clinical Oncology, to our contest, and for joining us to discuss your winning article. Taylor Goodstein: Thank you so much for having me. This is a great honor. Mikkael Sekeres: The honor was ours, actually. We had, if you haven't heard, a very competitive contest. We had a total of 159 entries. We went through a couple of iterations of evaluating every entry to make it to our top five, and then you were the winner. So thank you so much for contributing this outstanding essay both to our Art of Oncology Narrative Medicine Contest and also ultimately to JCO. Taylor Goodstein: Oh, thank you so much. Mikkael Sekeres: So, I was wondering if we could start by asking you to tell us something about yourself. Where are you from, and walk us through your career and how you made it to this point? Taylor Goodstein: Well, I grew up in a small town in Colorado - Glenwood Springs, Colorado. It is on the Western Slope, about 45 minutes north of Aspen. I went all the way to the east coast for college, where I ended up minoring in creative writing. So writing has been a part of my medical journey kind of throughout. I went to medical school back in Colorado at University of Colorado in Aurora, and then I did my residency training at he Ohio State University in Columbus, Ohio. And now I am at Emory University for fellowship. And I have been kind of writing all throughout, trying to make sense of the various journeys we go on throughout the experiences we have with going through our medical training. Mikkael Sekeres: That is amazing, and I noticed how you emphasized the "The" in Ohio State University. Taylor Goodstein: Yes, we fought hard for that "The." Mikkael Sekeres: Right, as do we at The University of Miami. Yes. What drew you to surgery, and specifically surgical oncology? Taylor Goodstein: My dad is a surgeon. My dad is an ear, nose, and throat doctor. And I am essentially him. We are the same person, and it made him very, very happy. So when I was looking at different medical specialties, I knew I was going to do a surgical subspecialty, and that is what I was drawn to. And then I was looking for the one that felt right, ended up finding urology, and then throughout my residency journey, I really gravitated towards cancer care. I really loved the patient population taking care of cancer patients, and surgically it felt like a way that I was going to be engaged and challenged throughout my career as there is so much that is always changing in oncology, almost too fast to keep up with all of it. But that is what really, ultimately, drew me to that career path. Mikkael Sekeres: It is great that you had a role model in your dad as well to bring you into this field. Taylor Goodstein: Well, he is very disappointed that I did urology rather than ENT, and he’s in private and I am going into academics, so there is plenty of room for disappointment. Mikkael Sekeres: I am sure the last thing in the world he is is disappointed in you. And I will say, so I am able to see your background here, our listeners of course are listening to a podcast and they are not. You have a very impressive bookshelf with a lot of different types of books on it. Taylor Goodstein: This is your guys' background! This was the option of one of the backgrounds I could choose for coming onto this. I didn't want to do my real background because I have a cat who is wandering around and was going to be very distracting. Mikkael Sekeres: That’s funny! Taylor Goodstein: But I did like the books. The books felt like a good option for me. I do have a big bookshelf; books are very important to me. I don't do anything on Kindle. I like the paper and stuff like that, so I do have a big bookshelf. Mikkael Sekeres: There is something rewarding in the tactile feel of actually turning a page of a book. You did writing from a very early stage as well. I was an English minor undergrad and then focused on creative writing as well and continued taking creative writing courses in medical school. Were you able to continue that during medical school and then in your training? Taylor Goodstein: Yeah, I thought that is what I was going to do when I first went to college. Like, I thought I was going to be a journalist or writer of some kind, and then I think maybe the crisis of job security hit me a little bit, and then also my desire to work with my hands and work with people. I wanted something to write about, something about my life that would be very interesting to write about, and that sort of led me initially to medicine. But then yes, to answer your question, I have been participating in a lot of writing competitions, like through the AUA, the American Urological Association, they do one every year that I have been doing in residency. And then in medical school we had some electives that involved writing and medical literature that we did. There was a collection of student writings, a book that got published during my last year of medical school that I had a couple of essays in. And the journey changes over time. When you are a medical student, you are on this grand journey and you are so excited to be there, but at the same time you feel so incredibly unprepared and useless in a lot of ways. You are just this medical student. The whole medical machinery is this well-oiled cog rotating together, and you are just this wild little- by yourself just trying to fit in. And that experience really resonated with me. And then residency has its own things that you are trying to make sense of. I think it all pales in comparison to what it is like to be a new surgeon for the first time, taking not necessarily your first big case but early in your career and having complications and making difficult decisions. I think is one of the hardest things that we probably have to deal with. Mikkael Sekeres: Well, you write about this in an absolutely riveting way. When you and your attending, you are a fellow on this case with your attending, realize that in the mess of this aggressive tumor that you are trying to resect, you have removed the patient’s external iliac artery and vein, you write, and I am going to quote you now to you, which is always a little awkward, but I am going to do it anyway: "It is hard to explain what it feels like. Belly drops, hands shake, lungs slow down, and heart speeds up. It takes several seconds, marked out by the beeping metronome of the patient’s own heartbeat, but eventually we return to our bodies, ready to face the error we cannot undo." As a reader, you are transported with you into that moment when, oh my God, you realize what did we do in this tremendous tumor resection you were undertaking? What was going through your mind at that moment? Taylor Goodstein: This is going to sound maybe a little bit funny, but I always think about this line from Frozen 2. I don't know if you have any kids or you have seen Frozen 2. Mikkael Sekeres: I have kids, and I have seen Frozen, but I have to admit I have not seen Frozen 2, and that is obviously lacking in my library of experiences. Taylor Goodstein: Frozen 2 is incredible, way better than Frozen 1. The adult themes in Frozen 2 go above and beyond anything in Frozen 1. But they are faced with some really big challenges and one of the themes that happens in that movie is all you can do is the next right thing. And it gets said several times. I remember connecting to that when I saw the movie, and I have said it to myself so many times in the OR since. You can't go backwards, you can't change what just happened. So all you can do is the next right thing. And so I think once the shock of what had happened kind of fades, all I am thinking in my head is like, “Okay, what is the next right thing to do here?” And obviously that was calling the vascular surgeon, and thankfully he was there and able to come in and do what needed to be done to restore flow to the patient’s leg. Mikkael Sekeres: It is so interesting how we are able to compartmentalize in the moment our emotions. The way you write about this and the way you express yourself in this essay, you are horrified by what has happened. This is a terrible thing, yet you are able to separate yourself from that and move forward and just do the right thing for the patient at that time and get your patient out of this and yourself out of this situation. Taylor Goodstein: I think that is honestly, and maybe not for everybody, but for me that has been one of the challenges of becoming a surgeon is learning that level of emotional control, because all you want to do is cry and scream and pull your hair out and hit your fists against the table, but you can't do that. You have to remain in charge of that ship and keep things moving forward. And it is one of those hidden skills that you have to learn when you are going to be a surgeon that you don't get taught in medical school, and you kind of learn on the job in residency, but there is not as much explicit training that goes into that level of emotional control that you have to have. And I have kind of gone on my own self-journey to get there that has been very deliberate for me. Mikkael Sekeres: That is amazing. Do you think as we progress through our careers, and I don't want to use a term that is so dismissive, but maybe I will try it anyway, that we become more nonchalant about surgeries or writing for chemotherapy or radiation therapy to deal with cancer, or is that fear, that notion of "with great power comes great responsibility," to loosely quote Spider-Man, is that always there? Do we always pause before we start the surgery, write for the chemotherapy, or write for the radiation therapy and say, “Wait a second, what am I doing here?” Taylor Goodstein: I think it is always there, and I would argue that it even grows as you get farther along in your practice and you gain this collection of experiences that you have as a surgeon where you develop complications and from that you change your practice, you change the way you operate, the way you consider certain operative characteristics. I would argue that, as time goes on, you probably get more cautious approaching surgery for patients, more cautious considering the side effects of different treatment options that people have. Mikkael Sekeres: I think that is right. There is danger in reflecting on the anecdotes of your career experience to guide future treatments, but there is also some value to remembering those times when something went wrong or when it almost went wrong and why we have to check ourselves before doing what may become routine at one point in our careers, and that routineness may be doing a surgery or writing for chemotherapy, but always remembering that there is great danger in what we are about to embark on. Taylor Goodstein: Always, yeah. Mikkael Sekeres: Taylor, what makes this story really special and one of the reasons it won our Art of Oncology Narrative Medicine Contest is just how deep you plunged into reflecting on this surgery. And you write, I am going to quote you to you again, you reflect on how people may criticize you and your attending for embarking on this surgery, but you say: "They never met him, not like you did. They did not see him buckled over in pain, desperation in his eyes. They did not hand his wife tissues or look at photos of his pregnant daughter or hear about his dream of making it to Italy one day. They did not hug his family at the end of it all and cry together as he rattled out sharp breaths. And they certainly did not know how much it meant to get two months free of pain and just enough time to meet his granddaughter." There is a hard truth you write it just perfectly, there is a hard truth to why we don't always follow CMS guidelines for not offering treatment at the end of life, isn't there? Taylor Goodstein: Yeah, it is tough. And you know, I think a lot about this because I have heard a few times to be cautious of the armchair quarterbacks, specifically when you are talking about M&Ms. It is so easy to come in at the other side of a bad outcome and talk about how you shouldn't have done this, you shouldn't have done that. And to be fair, during the M&M in question, as I think back to it, the feedback for the most part was very constructive and ways to maybe be more prepared coming into a surgery like this. Like, there were questions about whether - here at Emory, we operate over various different hospitals - of whether the hospital, it should have been done at an even different hospital was like one of the questions, that maybe had more resources. So things like that, but it is hard I think when you get that question like, maybe you shouldn't have operated. And there is- I think one of the lessons I learned here is being unresectable doesn't mean you can't resect the tumor. We say the word ‘unresectable’, like we obviously we resected it, but what was the cost of that, obviously? Like we can resect a lot of things, but how much collateral gets damaged in the process of doing that? However, it is a very challenging question. I mean, this guy had one option really. I mean, chemo wasn't going to work, radiation wasn't going to work, and his goals were different than our goals are necessarily when we talk about cancer care. He wanted to be free of pain, he wanted to be able to go home. He was admitted to the hospital, he was on an IV, like Dilaudid, like he could not get off of a PCA because of how much pain he was in. And he just wanted to go home and be there for the birth of his granddaughter, and that is what we tried to do for him. In which case we were successful, but in everything else, we were not. Mikkael Sekeres: And you were successful. I could imagine that when people are in pain, their immediate goal of course is to get rid of the pain. Being in pain is an awful place to be. But with the impending birth of his granddaughter, I have to imagine you realign what your goals are, and that must have been primary for him, and you got him there. Taylor Goodstein: We did. I also talked a little bit about this later on, this idea of providing peace for families. I think that there is this sense of maybe peace and acceptance that comes from having tried to do the long shot surgery, that if you had never tried, if you come to them right away and you say, “Oh, this is- I can guarantee that this isn't ultimately going to end up well,” there is still like that what’s going to linger in the back of their mind if it never gets attempted versus, okay, we tried, it failed, and now we can come with this almost like satisfaction or comfort knowing that we did everything we could. So I guess I think a little bit about that as well. Mikkael Sekeres: Well, I think that is a beautiful place to end this as well. There are so many factors we have to consider when we embark on this cancer journey with our patients and when we make recommendations for treatment, and it sounds like, and it is so beautifully reflected in your essay that you thought extremely holistically about this patient and what his goals were and appreciated that those goals had to be severely modified once he had his cancer diagnosis. Taylor Goodstein: I think the most important sentence is, "I still don't know what the right answer is." And I think that is important for me to end on. Mikkael Sekeres: Well, and you are still in training. I think it is so important to acknowledge that. When you are training, it is important to acknowledge it when you are at my stage of my career as well. There are still encounters where I come out and I think to myself, I am just still not 100 percent sure what the right thing to do is. But often we let our patients guide us, and we let their goals guide us, and then we know that at least it is right for that person. Taylor Goodstein: Yeah, exactly. Mikkael Sekeres: Well, it has been such a pleasure to have Dr. Taylor Goodstein, who is a fellow at Emory University, to discuss her outstanding essay, "A Chance to Heal with Cold Hard Steel." Taylor, thank you so much for submitting your entry to our first Art of Oncology Narrative Medicine Contest, for winning it, and for joining us today. Taylor Goodstein: Thank you so much for having me. Mikkael Sekeres: If you have enjoyed this episode, consider sharing it with a friend or colleague, or leave us a review. Your feedback and support help us continue to have these important conversations. If you are looking for more episodes and context, follow our show on Apple, Spotify, or wherever you listen, and explore more from ASCO at . Until next time, this has been Mikkael Sekeres for JCO Cancer Stories: The Art of Oncology. 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: so you never miss an episode and leave a rating or review. Guest Bio: Dr Taylor Goodstein is a Fellow at Emory University. /episode/index/show/aoopodcast/id/39901460

The Quiet Work of Clarity: Seeing Into the Future at the End of Life 01/13/2026

The Quiet Work of Clarity: Seeing Into the Future at the End of Life Listen to JCO's Art of Oncology article, "” by Dr. Henry Bair, who is an ophthalmology resident physician at Wills Eye Hospital. The article is followed by an interview with Bair and host Dr. Mikkael Sekeres. Dr. Bair explores how vision care can honor end-of-life goals and helps a patient with failing sight write to his children. TRANSCRIPT Narrator: , Henry, Bair, MD Mikkael Sekeres: Welcome back to JCO's Cancer Stories: The Art of Oncology. This ASCO podcast features intimate narratives and perspectives from authors exploring their experiences in oncology. 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 to have joining us today Dr. Henry Bair, an ophthalmology resident physician at Wills Eye Hospital, to discuss his Journal of Clinical Oncology Art of Oncology article, "Quiet Work of Clarity". At the time of this recording, our guest has no disclosures. Dr. Bair and I have agreed to call each other by first names. Henry, thank you for contributing to the Journal of Clinical Oncology and for joining us to discuss your article. Henry Bair: Thank you very much for having me. Mikkael Sekeres: I love starting off by getting a little bit of background about our guests. I know a little bit about you, but I'm not sure all of our listeners do. Can you tell us about yourself and how you reached this stage of your training? Henry Bair: Sure thing. Happy to start there. I was born and raised in Taiwan. I came to the United States when I was 18 for college. I was at Rice University. I was drawn to it because the Texas Medical Center was right over there, but the university had a small liberal arts feel and the university did not box me into any specific discipline. I went there and we didn't have to declare anything and we could take any class from any school over there. And I actually fell in love with medieval studies of all things. I just came upon it in one of the survey courses and I went deeper and deeper and deeper and eventually wrote my thesis on medieval Irish manuscripts. That was really interesting. At the same time I was doing some clinical work and I realized that medicine might be a way to combine my interest in storytelling and the humanities with making a tangible difference in people's lives. Then I was in medical school at Stanford University, which was, in a similar way, I found a place that really let me explore what it meant to be a physician because the medical school let me take classes from all across the university: so the law school, the school of humanities, school of engineering, the business school. I got a chance to do a little bit of a lot of different things to try to figure out what I actually wanted to do with life. And I spent a lot of time actually doing a little bit of palliative care, a little bit of oncology, some medical education, some medical humanities. I had a lot of time thinking about, “Okay, what kind of specialty do I want to do?” I found myself really enjoying procedural specialties, but also really liking the kinds of patient interactions and conversations I had in palliative care and oncology, and eventually found ophthalmology, interestingly. I often have to remind myself or explain myself how those two connect. And to me, the way they connect is that ophthalmology lets me do very fascinating, intellectually challenging things in terms of working with my hands, very rewarding surgical procedural work. But at the same time, the conversations that I get to have with patients about seeing well, I saw so many parallels between that and living well. To me it was so much about quality of life. And that's how I knew that ophthalmology was the right move for me. And so now I'm an ophthalmology resident. Mikkael Sekeres: Fascinating. When I was an undergrad, the person who had the most influence on me was an English professor who was also a medievalist. There must be something about the personality and pouring over these old texts and trying to read things in Middle English that appeals to some character trait in those of us who eventually become physicians. I also remember when I was in medical school, we could also take classes throughout the university. So I wound up taking some writing classes with undergrads and with graduate students. It adds to this holistic education that we bring to medicine because it's not all about the science, is it? Henry Bair: Yeah, it's also different ways of thinking and seeing the world and just hearing people's different stories. It's the people I've met in a lot of those different settings outside of medical school that I think really enhanced my formative years in medical education. Mikkael Sekeres: You certainly bring it all together in this essay, which was just lovely. And I wonder if we could dive into some of the aspects of this essay. I'm dying to know, when you went to see this man, the main character of your essay, did you have any idea what the consult would be about? Henry Bair: No. So when we're in the hospital and as the ophthalmology resident on consult, we get notifications. These pop up whenever a primary team puts in a consult and it's usually fairly vague. It's usually no more than "blurry vision, please evaluate," "eye pain, please evaluate." As an ophthalmologist, getting a consult for blurry vision is kind of like a cardiologist getting consulted for chest pain. You're like, “Okay, but it could be something, it could be nothing, it could be something terrifying, it could be dry eyes, or it could be end-stage glaucoma, or it could be, who knows?” You really genuinely never know what you're getting yourself into until you actually go in there and talk to the patient, which can be frustrating, but also kind of an interesting experience. Mikkael Sekeres: I worry I'm guilty of submitting some of those consults to ophthalmology. Henry Bair: I didn't realize this fully until I started working on the ophthalmology side. I think non-ophthalmologists get so little exposure and training in ophthalmology. Of course, when I think about it, I didn't get any ophthalmology in medical school. So it's understandable. Mikkael Sekeres: In your essay, you write, and I'm going to quote you to you, "I am still learning what we can treat and what we can only tend. My training has taught me well how to assess visual acuity, intraocular pressures, and retinal nerve fiber layer thickness, but standing at his bedside, the index that mattered was none of these, but whether we could help him read for one more day." “What we can treat and what we can only tend.” That's such a beautiful line. Is that something that only comes with years of experience, determining what we can treat and what we can only tend, or is it a dawning sense as we get to know our patients when we are trying to stop the inevitable from happening? Henry Bair: That is an interesting question because I think of it more almost as a fundamental shift in mindset. And I'm coming from someone who I think had the benefit of having had mentors, having had clinical experiences in palliative care in medical school. As I mentioned earlier, I was drawn to a lot of those patient conversations. So I think in some ways, starting in residency, I had long been primed to think about tending to a patient's concerns. And yet, even having been primed, even having the benefit of all those experiences and those conversations with amazing clinicians and with patients, maybe it's subject matter specific. I mean, ophthalmology tends to be a specialty, in my experience, my limited experience, ophthalmology tends to be one of those specialties that focuses so much on fixing things and treating things and reversing things. And in fact, that's one of the beautiful things of ophthalmology: how often you can reverse things or completely stop the progression of disease. And so I think in some ways, I am having to relearn what it means to see something not always as, “Okay, what's a problem here? What is the fix? How do I reverse this?” and go back and reach back to those experiences, those conversations I had with patients about trying to figure out, “Okay, the things that we can't fix, what can we still do?” To most people who have come across palliative care, this sentiment is by no means novel, the sentiment that there is always something we can do. You often hear about people talking about, “Oh, there's nothing more we can do.” And I sort of try to bring that approach into the clinical encounters that I have. It's very reflexive to think that, “Okay, a person has lost vision from end-stage glaucoma or they have a blind painful eye. Well, there's nothing more we can do. You know, we've done all the conventional surgeries, we've done all the therapies, the medications,” but I always have to pull myself back and say, “But there's always something we can do here.” Mikkael Sekeres: It's so interesting how you frame that. We're problem solvers. We're trained to solve problems. A patient presents with X, a problem, we have to be clever enough to figure out how to solve it. I wonder if what you're saying indirectly is sometimes we're identifying the wrong problem. Henry Bair: I think so, yeah. Mikkael Sekeres: There may be a problem that we can't solve. Someone is actively dying from cancer. We can't solve the problem of curing them of their cancer. But there are other problems that we can potentially solve, and maybe that's where we have to be clever in identifying the problem. Henry Bair: I think so. And it's also what's in our textbooks and what's not. So we spend hundreds of hours in lecture and we pour over so many textbooks, and I do question banks now for board exams preparation. It's all on the textbook presentations, the textbook solutions. The problems are, you know, the retinal artery occlusions, it's about the really bad diabetic retinopathy. And then the answers to those things would be a stroke workup, would be some kind of injection into the eye. But like the problem that I encountered in this story that I talked about was this patient trying to write letters to his kids. That's not going to show up on any exam. We don't have lectures about talking about those things. Mikkael Sekeres: So, as I think you know, I wrote an essay in 2010 for Art of Oncology and for a book that I wrote about a woman who inspired me to go into oncology. She was a woman in her 40s who was a pediatric attending who had advanced ovarian cancer. The story I wrote about her was how she spent her final night on this earth in the intensive care unit writing cards for her children, too. It's fascinating how history repeats itself in how we care for people who have cancer. You have a really a beautiful way of saying this. You talk about, “an ordinary father sharing ordinary advice for an ordinary day. Illness had made that ordinariness remarkable. Our work that day was to protect the ordinary.” Can you talk a little bit, I mean given the woman I wrote about and the man you wrote about, about this need to communicate with your family after you're gone? Henry Bair: To me, one of the biggest lessons I've learned working in healthcare is that what defines most of our lives, what defines the most meaningful, the most purposeful, the most rewarding aspects of our lives is our relationships. You can explore this from myriad perspectives. You can explore this from like a psychosocial perspective and look at all those studies showing that people who have better social connections and better ties with their families live longer lives and actually healthier lives, have decreased rates of mental health problems. Or we can just approach this from like a more humanistic perspective and explore it and think and listen in on the conversations people have with people around them, that patients have, the conversations patients have during the most difficult times of their lives. They don't talk about their work, they don't talk about their accomplishments, they talk about their relationships with their kids, with their spouses, with their parents. In my experience when people are at critical junctures of big life changes, whether it's people about to go into major surgery, people grappling with the idea of losing their vision or losing their lives, any sort of big pivotal change, they want to talk to their families and explore gratitude and regret and all these things. These are the themes that come up over and over and over again. In some ways it does not surprise me at all, this need to communicate with the family at the end of life. In some ways that's how you live on, that's how we feel, that's how patients feel their lives are defined by is that lasting relationship, that lasting impact at the end, or even transcending the end. Mikkael Sekeres: This is going beyond the end, isn't it? Henry Bair: Yeah. Mikkael Sekeres: These are letters and notes being written to children to be handed to them after death. And I think one of the reasons, in my case, the woman I encountered when I was in training who inspired me to go into oncology, I've been thinking about her for 25 years off and on. Both the incredible spirit to be able to do that on your last night on this earth, but also the flip side to it: there are potential downsides to doing this, aren't there? That, you know, I think about it from the perspective of her kids who at the time were 8 and 10 years old in my case. And I wonder what it was like for them to open up that birthday card when they were 17 or 18. And I wonder if you've kind of wondered the same about your patient and his children. Henry Bair: Yeah, I think when we think about these letter-writing projects, legacy-type projects, I hear about in hospitals around the country, there are teams that try to implement legacy-type things: whether it's doing video messages, whether it's stitching together short documentary film for patients who are in hospice. I feel like I see these things popping up a lot. You raise a very important point, and I actually didn't think about this until I was writing the essay. It's not an unambiguous good because it's the impact is variable, and it's really hard to predict that. How did you grapple with that in your essay? How did you make sense of it all at the end? Mikkael Sekeres: I don't think I did. I don't think I still have, which is why I think I still reflect back 25 years later on this episode and thinking about her children and how they're now, maybe they're still continuing to receive these cards from her and whether that's something they really appreciate and are like, “Boy, this is great, I get a little piece of mom still even now,” or do they look at her unsteady hand as she's writing these cards and say, “That's not the mom I want to remember.” Henry Bair: Yeah, that's a really good point. In the essay, I talk about that moment when the patient recognizes these are very imperfect letters, imperfectly written. We talked a little bit about that. And the patient makes a point, very wisely. I had suggested, "Oh, what if you want me to correct things?" And he's like, "No, no, no, the mistakes are part of it. It's part of the message. The message is that this was me at a difficult time in my life. I cannot control my hands the way that I used to, but that's still part of me. That makes it more genuine and authentic, mistakes and all built in.” He wanted his children to see him for who he fully was in that moment. Mikkael Sekeres: And that was such a poignant part of your essay and probably the one that jumped out at me the most. Like as a dad, you want your kids to see you for who you are, right? You're not a superhero. In this case, this is somebody who was going to succumb to his illness, who did, but he was their dad and wanted them to remember him for all of who he was at that moment. Before I let you go, Henry, because I feel like we could probably talk for hours about this, before we started this podcast, I noticed you had better podcast equipment than I do, and sure enough, you copped to the fact that you do host your own podcast. You want to tell us a little bit about that? Because it touches on so many themes we touched on here in Cancer Stories. Henry Bair: Yeah, well thanks for asking me about that. Yeah, don’t mind if I plug a little bit. Yes, so in medical school, this was 2021, around 2022, we were emerging from the COVID pandemic, and one of the things I was seeing around me as a medical student were physicians and nurses leaving the profession in droves. Like, there were so many reports and surveys coming out of the AMA discussing how more than half of all physicians are burned out, a third of physicians can't find meaning in their work anymore. And that was really scary. As a clinical trainee, what was I getting myself into? These weren't just some clinicians somewhere. These were often times- I was hearing these kinds of conversations about losing sight of why they even come in in the first place to work. I was hearing these conversations from professors that I thought were well-accomplished. These were people who had gone to the right residencies, the right fellowships. They had the right publications. These are people who I aspired to be, I suppose, and they were talking about leaving clinical practice. A wonderful mentor of mine who is an oncologist, still an oncologist at Stanford, we started talking about these things. And I asked him, "You seem to love your job." He was a GI oncologist dealing with very, very sick patients day in and day out. I've seen him in clinic. And I asked him, "What's your secret? What keeps you coming back over and over and over again?" And so that led to a conversation. And then we realized, “Wait a second, there are people, a third of physicians losing meaning in their work meant that two thirds of physicians have meaning in their work. Okay, let's talk about that.” So we started exploring, we started just asking clinicians who have found true purpose in their work. And then we asked them to share their stories. And that's how the podcast was born. It's called The Doctor's Art, and at this point, we've expanded and we interview nurses and patients and caregivers. We interview philosophers and filmmakers, journalists. We interview ethicists and religious leaders, really anyone who might have some insight about what living well means either from the clinician perspective or from the patient perspective. And guess what? Everyone is going to be either a caregiver or a care recipient at some point in their lives. It's still ongoing and it's ended up being something where we explore very universal themes. Mikkael Sekeres: Well, it sounds great, Henry, and it sounds like a perfect complement to what we're doing here in Cancer Stories. It has been such a pleasure to have Dr. Henry Bair, who is an ophthalmology resident at Wills Eye Hospital, to discuss his essay, "The Quiet Work of Clarity". Henry, thank you so much for submitting your article to the Journal of Clinical Oncology and for joining us today. Henry Bair: Thank you very much, Mikail, for letting me share my insights and my story. It was a wonderful opportunity. Mikkael Sekeres: If you've enjoyed this episode, consider sharing it with a friend or colleague, or leave us a review. Your feedback and support helps us continue to have these important conversations. If you're looking for more episodes and content, follow our show on Apple, Spotify, or wherever you listen, and explore more from ASCO at . Until next time, this has been Mikkael Sekeres for Cancer Stories. 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... /episode/index/show/aoopodcast/id/39677350

Final Silence: The Weight of Unspoken Words 12/23/2025

Final Silence: The Weight of Unspoken Words Listen to JCO's Art of Oncology article, "” by Dr. Ju Won Kim, who is an Assistant Professor at Korea University College of Medicine, Medical Oncology. The article is followed by an interview with Kim and host Dr. Mikkael Sekeres. Dr Kim explores the burden of silence when caring for dying patients. TRANSCRIPT Narrator: , by Ju Won Kim Dr. Mikkael Sekeres: Welcome back to JCO's Cancer Stories: The Art of Oncology. This ASCO podcast features intimate narratives and perspectives from authors exploring their experiences in oncology. I'm your host, Mikkael Sekeres. I am a Professor of Medicine and Chief of the Division of Hematology at the Sylvester Comprehensive Cancer Center, University of Miami. We are so thrilled to have joining us today, Dr. Ju Won Kim. She is Assistant Professor at Korea University College of Medicine, and she is here to discuss her Journal of Clinical Oncology article, "Final Silence." Ju Won, thank you for contributing to the Journal of Clinical Oncology and for joining us today to discuss your article. Dr. Ju Won Kim: Hello, Mikkael. It's really nice to be here. Thanks so much for inviting me. Dr. Mikkael Sekeres: It's so nice to have you here today also. Thank you for also taking time so late in the evening because our time difference is so huge. Dr. Ju Won Kim: Yeah, it's not that late. It's 9 o'clock in Seoul. 9:00 PM. Dr. Mikkael Sekeres: I wonder if I could start by asking you if you can tell us about yourself. Could you walk us through your career so far? Dr. Ju Won Kim: Yes. I am Ju Won Kim from Korea University in Seoul. I was born and also raised here and never really left from Seoul. I did my residency in internal medicine and fellowship in oncology at the same hospital, and now I'm an assistant professor there. So you could say I've spent my whole life on the same campus, just moving from one side of the hallway to another. Dr. Mikkael Sekeres: That's a beautiful way of describing it. Is that common in Korea for somebody to remain at the same institution for training and then to continue through your career? Dr. Ju Won Kim: It used to be common about a decade ago, but nowadays it is not that common. Most of my colleagues are from another campus or another hospital. Dr. Mikkael Sekeres: Well, I'm so curious, what is a typical week like for you? How many days do you spend seeing patients and how much time do you spend doing research or writing or have other responsibilities? Dr. Ju Won Kim: Usually, I spend four times for my outpatient clinic, but in Korea, there are so many cancer patients and so little number of medical oncologists. I usually treat so many patients in one clinic, like maybe 20 to 30 in one time. Dr. Mikkael Sekeres: Wow. Dr. Ju Won Kim: Yeah, that's a burden. Most of the time I spend treating my patients, and rest of them I use to spend for my research with my lab students, and maybe with my colleagues, and I have to write something like documents or some kind of medical articles. That is about 10 or 20% of my working time, I think. Dr. Mikkael Sekeres: Okay, okay. That makes sense. So, and do you specialize within oncology, or do you see any person who has cancer? Dr. Ju Won Kim: I'm a medical oncologist, and I used to treat breast cancer or biliary pancreatic cancer or some kind of liver cancer or rare cancer, maybe, also. Dr. Mikkael Sekeres: Okay, okay. It's such a long trip. Are you able to make it to the ASCO Annual Meeting in Chicago? Dr. Ju Won Kim: Actually, I've been Chicago for ASCO meeting just one time in this year. Actually, I gave birth to my son in March, and I was in the long vacation for my birth, and the last part of my birth vacation, I went to Chicago to participate in ASCO. It was a really good time. Dr. Mikkael Sekeres: Oh, fantastic. That's great. How about your own story as a writer? How long have you been writing narrative pieces and when did you start? Dr. Ju Won Kim: Actually, I've always thought of myself more as a reader than a writer. Reading was my comfort zone from childhood. Then I started a small book club with friends about 10 years ago, and we began writing short reflections after each meeting. That's how writing slowly became part of my routine. When reading feels heavy, I write. When writing feels tiring, I read. It's a rhythm that keeps me balanced. At first, it was only academic writing like medical articles, but a few years ago, I challenged myself to post one short reflection a month on my Instagram, usually a quote from a book and a few sentences on why it mattered to me. It was my life about writing. Dr. Mikkael Sekeres: That is really remarkable. So, did you take any formal writing classes at university? Dr. Ju Won Kim: Not really. It was just a hobby of my own. Dr. Mikkael Sekeres: It always impresses me when people come into writing organically like this, where they just discover it and start and don't have formal teaching because your writing is very, very good. Dr. Ju Won Kim: Oh, thank you. Dr. Mikkael Sekeres: And how do you find the time to read and write when you have a busy career, academic career, and you have a child? Dr. Ju Won Kim: It was my old routine that I used to read it before going to bed, from my bedside with a small light, I used to read some novels and get to sleep easily. But after I started to work as a medical oncologist, it was a very busy job as you know. I used to sleep more and not have time for reading. I try to read more when I get some free time. Dr. Mikkael Sekeres: I love how you talk about alternating reading and writing and how when one gets too heavy, you go to the other, and then you switch back. One of the most common pieces of advice I've heard from writers is to read more. Dr. Ju Won Kim: Yeah. Dr. Mikkael Sekeres: You can see how other people put thoughts together and the cadence of their writing, and also it inspires your mind to develop new ideas for writing. Dr. Ju Won Kim: Actually, the new idea also comes from the book, I think, when I came into a new book and the idea bangs up with me, so I started to write and that's an easy way to have some idea about writing. Dr. Mikkael Sekeres: I'm always impressed by people who are facile with languages and bilingual or trilingual. I think I'm unfortunately a hopeless monoglot. Dr. Ju Won Kim: Maybe you can try Korean. Dr. Mikkael Sekeres: I'd be embarrassed to even attempt it. When you read, do you read in Korean or do you read in English or other languages? Dr. Ju Won Kim: Definitely in Korean. Dr. Mikkael Sekeres: Okay, okay. And when do you find the space to write? Do you need to be alone at home in a special room or at a special desk, or do you write at work, or do you just find any time to write? Dr. Ju Won Kim: I usually don't have much time on my own because I have my baby now and some family gathers frequently. So, I always write every free time I'm trying to, any short free time in my work maybe. Dr. Mikkael Sekeres: If you feel comfortable doing so - this is a very heavy piece, and a lot of us have dealt with deaths of our own patients, of course, we see this unfortunately commonly in oncology, but many of us, myself included, have also dealt with patients or their family members who've committed suicide - can you tell us what prompted you to write this piece? Dr. Ju Won Kim: As an oncologist treating biliary and pancreatic cancers, I've witnessed many deaths, as you know. Most fade with time because I treat so many patients, but just one family stayed with me, I think. It was early in my career, just months after I started this specialty, and even 5 years later, I still think about them, the family I wrote about in the "Final Silence." The story eventually became the piece I wrote. Dr. Mikkael Sekeres: And what is it about them that caused you to think about them so much even years later? Dr. Ju Won Kim: I'm not sure. That's the only experience I came into someone's suicide so closely in my life, I think, and also it happened in my very early career. That's the impact. Dr. Mikkael Sekeres: It is amazing how certain patients stick with us even years or decades later, particularly when they're tied to an emotional response to illness, and that can be our patients' emotional response or our own. Can you talk some about Korean culture and how cancer is viewed? Is it discussed openly? Dr. Ju Won Kim: In Korea, death is still a quiet topic. Cancer equals death in many people's minds, and death equals grief. Even today, some families ask doctors not to tell their patients about the diagnosis, but Korea is aging so fast, so I see more older patients now, but culturally, we are still learning how to talk about dying openly. That's the big problem as a medical oncologist, especially treating biliary and pancreatic cancers. Dr. Mikkael Sekeres: I can just imagine. When you first meet a patient and their family is in the room, do you tell them that they have cancer, or do you need to check in with the family and with the patient how much they know about their diagnosis first? Dr. Ju Won Kim: Actually, I usually try to tell them there is a cancer, which can never be treated perfectly, because I used to treat patients with stage four, which is incurable, but I'm not sure is it okay to tell them that your life is about 3 months or 6 months or 1 year. It is not that okay for the Korean patients, especially the first time when they meet me in the clinic. I try to tell them about the truth just a few times later. Dr. Mikkael Sekeres: I think that's common. I think we do that in the United States also. We may not mention a number to patients during that very first meeting because when you're talking to somebody and once you mention that number, often people will shut down. They won't hear anything else that you say. And you need to build up a relationship and some trust with somebody and also get the sense how much they want to know about their cancer and their prognosis before entering that conversation. I've certainly had instances when I'm in a room with a patient, and that patient's spouse or children, and someone else in the room will say, "How long does Dad have to live?" And I've turned to my patient, “Dad”, and said, "Is this a number that you want to know?" And the patient has said, "No, I don't." Dr. Ju Won Kim: Yeah, that happens. Dr. Mikkael Sekeres: So sometimes we have to be careful and check in and remind ourselves in the high emotions around a cancer diagnosis that our first responsibility is always to our patient and what they want to know about their diagnosis and their prognosis. Dr. Ju Won Kim: Do you have any opposite cases where patients really want to know the numbers? Dr. Mikkael Sekeres: Yeah, I do. And, you know, you can almost predict who that's going to be depending on what they did during their lives. Dr. Ju Won Kim: Yes. Dr. Mikkael Sekeres: So I have patients who are engineers or who have a math-based career like they're accountants and they'll come in and they write every number down and they want to know the number about their prognosis. I have other patients who are English professors and they want descriptively to know what the prognosis is but maybe don't want a number. So... Dr. Ju Won Kim: I think most Koreans want the number, the specific number. Yeah. Dr. Mikkael Sekeres: I'm curious, is cancer in a father or a son dealt with differently than cancer in a mother or a daughter? Dr. Ju Won Kim: I don't think there's much difference between sons and daughters, or maybe moms and dad, because every child is very precious in Korea now, but between husband and wives, I think the dynamic stands out. People often say when a husband gets cancer, the wife becomes his main caregiver, but when the wife gets cancer, sometimes the husband disappears. I've heard that from my colleagues, though not often in my own clinic. Now, what I do see is many middle-aged women who have been diagnosed with breast cancer, women coming to treatment alone, strong and very independent. Dr. Mikkael Sekeres: Interesting. So I was going to follow up by asking if you've seen that in your own clinic. Have you seen- is it more likely that your female patients who have a cancer diagnosis come to clinic alone but the male patients come with their spouse and with family support? Dr. Ju Won Kim: Yeah, it is not just because of their sex, but most of the breast cancer patients who are female are in good condition, but biliary pancreatic cancer male patients have very poor condition, so... Dr. Mikkael Sekeres: Ah... Dr. Ju Won Kim: Maybe, I think that's the problem. Dr. Mikkael Sekeres: Interesting. The part of your essay in which you describe the attempted suicide of your patient's daughter is absolutely chilling. How did that affect you? Have you ever had a patient attempt suicide before? Dr. Ju Won Kim: Yes, the event I wrote in my essay was extremely shocking for me, but it's the only experience I have. It wasn't my patient, but I've heard a few cases where someone in the hospital tried to take their own life. I haven't had that happen directly, but I've seen patients fall into deep depression or break down in tears. In those moments, I always suggest psychiatry nowadays. That used to be taboo in here, but the stigma is fading, and many patients actually feel better afterwards. I also check in with close family members because their mental state affects the patients, too. It's something I hope never to experience again. Dr. Mikkael Sekeres: It's so unsettling when that happens, and as I mentioned, I've had a patient who took his own life, and you go back and back and back to it to wonder if there's something you could have done to intervene quicker or to get that psychosocial support in place to help that patient so that you avoid it in the future. And, you know, you protect your patients and yourself. Dr. Ju Won Kim: Yeah, I try to. Dr. Mikkael Sekeres: Speaking of protecting, you write, and I'm going to quote you to you, "I told myself I was protecting her, that to burden her in her final hours with such unthinkable news would be cruel. But a deeper truth is that I was protecting myself. I didn't know how to say it. I didn't know how to bear the weight of her devastation on top of my own shock and helplessness, so I avoided it." Do we owe it to ourselves sometimes to protect ourselves from the pain we sometimes impart to our patients? Dr. Ju Won Kim: That reflection came from realizing how doctors sometimes say we are protecting patients from pain, but really, we are protecting ourselves, I think. It's human. We can't hold every piece of suffering we see. Setting emotional boundaries isn't weakness. It's survival. What matters is recognizing when it's self-protection and being honest about it later. Dr. Mikkael Sekeres: Well, I think something that really helps with that is being able to talk to our colleagues about times when this happens and recognize we're in a shared experience and that we have the support of our colleagues, and they recognize how hard it is to be the bearer of bad news to other people and to bring pain to them sometimes. Dr. Ju Won Kim: That really works. Dr. Mikkael Sekeres: Dr. Ju Won Kim, it has been such a pleasure having you on this show. Dr. Kim has written just a fabulous essay called "Final Silence" for JCO Art of Oncology. Thank you so much for sharing your article with us and for joining us today. Dr. Ju Won Kim: Yeah, thank you so much for the conversation. It was a pleasure talking with you. Dr. Mikkael Sekeres: If you've enjoyed this episode, consider sharing it with a friend or a colleague or leave us a review. Your feedback and support helps us continue to have these important conversations. If you're looking for more episodes and context, follow our show on Apple, Spotify, or wherever you listen and explore more from ASCO at . Until next time, this has been Mikkael Sekeres for Cancer Stories. 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: so you never miss an episode and leave a rating or review. Guest Bio:Dr Ju Won Kim is an Assistant Professor at Korea University College of Medicine, Medical Oncology. /episode/index/show/aoopodcast/id/39114945

Smell: The Scent of Inevitability 12/09/2025

Smell: The Scent of Inevitability Listen to JCO's Art of Oncology article, ",” by Dr. Alice Cusick, who is a Hematology Section Chief at Veterans Affairs Ann Arbor Health System and Assistant Professor at the University of Michigan Division of Hematology and Oncology. The article is followed by an interview with Cusick and host Dr. Mikkael Sekeres. Dr Cusick shares a connection to a cancer patient manifested as a scent. TRANSCRIPT Narrator: , by Alice Cusick, MD Dr. Mikkael Sekeres: Welcome back to JCO’s Cancer Stories: The Art of Oncology. This ASCO podcast features intimate narratives and perspectives from authors exploring their experiences in oncology. 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. Joining us today is Alice Cusick, Hematology Section Chief at the Veterans Affairs Ann Arbor Healthcare System and Assistant Professor at the University of Michigan, Division of Hematology and Oncology, to discuss her Journal of Clinical Oncology article, “Smell.” Alice, thank you for contributing to Journal of Clinical Oncology and for joining us to discuss your article. Dr. Alice Cusick: Thank you so much for having me, Mikkael. I appreciate it. Dr. Mikkael Sekeres: It’s really a pleasure, and as usual, Alice and I discussed this beforehand and agreed to call each other by first names. I always love to hear your story first. Can you tell us about yourself? Where are you from, and walk us through your career, if you could. Dr. Alice Cusick: I’m a Midwesterner. I grew up in Iowa and Illinois and went to a small college in Illinois, played basketball, Division lll, and was an English Literature major. I took one science class and was going to be an English professor. And then my father’s a physician. My senior year, I realized I don’t think I could spend all my time in a library. I didn’t feel like I was helping anyone. And so I talked to my dad, and he said, “Yeah, I think you could be a doctor.” So I thought I would help people by being a physician. So I moved to Iowa City and spent two years working in a lab and doing science classes and took the MCAT, which was the first year they had the essay on there, and I rocked that. That was my highest score. I got into the University of Iowa and then went on to residency and fellowship at the University of Wisconsin, just in hematology. I didn’t do solid tumors. And then went on, spent a couple years there, worked in Pennsylvania in more of a group practice, and then came back to academics at the University of Michigan about 10 years ago. And then five years ago, I became the Hematology Section Chief at the VA in Ann Arbor. So I work there full time now. Dr. Mikkael Sekeres: I love that story. I served on the admissions committee at Cleveland Clinic and Case Western when I was also a Midwesterner for 18 years. And I always wondered if instead of searching for science majors, we should be searching for English majors because I think there’s a core element of medicine that is actually storytelling. Dr. Alice Cusick: Oh, very much so. My father was a country doctor for many, many years in rural Iowa in the fifties and sixties. So he did house calls, and he talked about how you really got to know people by going to their house. And I’ll never forget the first time that I did a full history and physical, I think I was maybe a second-year medical student, and I was telling him, “Oh, I’m so excited. I’m going to do my first history and physical.” And he said, “Alice, don’t talk to them about medicine right away or about their problems right away. Talk to them about something else. Get to know them because you know about sports, talk about sports.” I said, “Dad, that’s called establishing rapport.” You know, that’s what they had taught us. But it was intuitive to him. I’ll never forget that he just said their story is important and how they live and where they live and who they live with is so important. It really helps you figure out their medical issues as well. And I’ve always tried to carry that through. Dr. Mikkael Sekeres: It’s funny what we glean from our parents. My dad was a journalist for the Providence Journal-Bulletin. He was a reporter for a couple of decades, and I almost feel like some of what I’m doing is acting as a reporter. It’s my job to get the story and get the story right and solicit enough details from a patient that I really have a sense that I’m with them on the journey of their illness, so I can understand it completely. Dr. Alice Cusick: Oh, very much so. And that’s one of the things I really harp about with the fellows because sometimes I remember more of the social history than I do sometimes the medical history when I’m seeing a patient. I remind them, you need to know who they live with and how they live. It helps you take care of them. Dr. Mikkael Sekeres: Well, and that must be particularly germane with your patient population. When I was a medical student, my first rotation on internal medicine was at the Philadelphia VA, and it’s actually what convinced me to specialize within internal medicine. What is it like caring for veterans? Dr. Alice Cusick: This is the best job I’ve ever had in my life. And I think because it speaks to my sense of duty that I got from my parents, particularly from my father, and I really feel I got back to my original focus, which is helping people. So that sense of duty and serving those who served, which is our core mission, this job is the most rewarding I’ve ever had because you really feel like you’re helping people. Dr. Mikkael Sekeres: How much do you learn about your patients’ military history when you first interact with them? Dr. Alice Cusick: It can come up in conversation. It sort of depends on what the context is and how much you ask and how much of that is incorporated into what’s going on with their medical history. It comes up a lot in terms of, particularly cancer, because a lot of cancers that veterans develop can be related to their military exposures. So it can come up certainly in that context. Dr. Mikkael Sekeres: You write about how your patient and his wife brought in photographs of his younger self. Can you describe some of those photos? Dr. Alice Cusick: So a lot of it was about the sports he was doing at the time. He was kind of almost like a bodybuilder and doing like martial arts. So there were some pictures of him in his shirt and shorts, showing how healthy he was. He was much younger, but it was such a contrast to how he was at that time as he was nearing death. But it really rounded out my understanding of him because, as we all know, when we meet people, we see them when they’re at that particular age, and we may not have that context of what they were 20, 30 years ago. But that still informs how they think about themselves. I mean, I still think of myself as an athlete even though I’m much older. So that’s important to understand how the patient thinks about himself or herself. Dr. Mikkael Sekeres: You know, it’s funny you mentioned those two photographs. I- immediately flashed into my mind, I had a patient who also was a martial arts expert, and I remember he was in his early seventies and hospitalized, but he made sure to put up that photo of him when he was in his prime, in his martial arts outfit in a pose. And I’ve had another patient who was a boxer, and all he wanted to talk about whenever he saw me was his first experience boxing in Madison Square Garden and what that moment felt like of climbing into the ring, squeezing in between the ropes, and facing off in front of what must have been some massive crowd. Dr. Alice Cusick: Yeah. Dr. Mikkael Sekeres: Why do you think it was important to them to bring in those photos to show you? Dr. Alice Cusick: I think it was to help me understand what he had been. I think it was important for him, and because we had a relationship, it wasn’t just transactional in terms of his medical problems. It was really conversations every day about what he was doing and how his life was going. And I think he really wanted me to understand what he had been. And so I felt really honored because I think that was important. It told me that his relationship with me was very important to him. I found that very, very humbling. Dr. Mikkael Sekeres: Yeah, I find it fascinating the details that patients offer to us about themselves as opposed to the ones that we solicit. I think it speaks to also the closeness of the relationship we have with patients when they want to share that aspect of them. They want to show you who they were before they were ill. And it’s not a point of bragging. It’s not flexing for them. I think it’s really to remind themselves and us of the vitality of the person who’s sitting in front of us or lying in front of us in the hospital johnny or sitting on an exam table. Dr. Alice Cusick: Oh, very much so. And I’ve experienced that even with my own parents as they got older and were in the medical system. I remember vividly, my father had had a stroke, and the people taking care of him didn’t understand what he had been. They didn’t understand that his voice was very different. We kept asking, you know, “His voice is different.” They had no concept of him beforehand. So that also really hit home to me how important it is to understand patients in the whole context of their lives. Dr. Mikkael Sekeres: And as a family member, do you think it’s equally important to share that story of who somebody was before they were ill as a reminder to yourself and to the people taking care of a relative? Dr. Alice Cusick: Oh, very much so. I think it’s very helpful because it also makes you feel like you’re supporting the loved one as well by, if they can’t speak for themselves, particularly when they’re very ill, to help people understand, it may help the physicians or any provider understand their illness better, especially if there’s a diagnostic dilemma, thinking about going home, what are they going to need at home, those sorts of things. I think it’s always important to try to provide that context. Dr. Mikkael Sekeres: Patients will often talk about their deaths or transitions to hospice as an abstract future. Do you think they rely on us to make the decision about a concrete transition to hospice, or do you think they know it’s time and are looking for us to verbalize it for their family and friends? Dr. Alice Cusick: I think it depends on how much groundwork you’ve done beforehand. So when you talk about end of life with people well before that transition it’s almost mandatory, I think it’s very important. It makes the transition much smoother because then they understand what hospice is, and they can prepare themselves. When they’re not prepared, I think it’s much more of a very clear transition. So it’s almost like you’re shutting one door, disease treatment, and moving on to, “I’m just going home to die,” versus when you’re laying the groundwork and you make sure that it’s about how you live. I always try to emphasize, it’s how you want to spend your time. It’s how you want to live. Hospice is helping people live the best they can for as long as they can. And if you haven’t prepared people, I think then they think much more you’re closing the door and you’re just sending me home to die. Dr. Mikkael Sekeres: It’s tricky though, isn’t it? Because as an oncologist or hematologist-oncologist, in our case, people look to us for that hope that there’s still something to do and there’s still life ahead of them. But at a certain point, we all realize that we need to transition our focus. But once we say that out loud, do you ever feel like it almost shuts a door for our patients? Dr. Alice Cusick: Again, it depends on the situation, and it depends on the support they have. It’s different when you’re dealing with somebody who’s out in an outpatient world who has good family support and you’ve developed a relationship versus the patient who’s taken a very sudden turn for the worse, and maybe is in the hospital, and things are more chaotic, and maybe they’ve been on very active treatment beforehand, but suddenly things have changed. So in my mind, it depends on the context that you’re dealing with and what the relationship you have prior to. Maybe you’re covering for your colleague, and you don’t have a relationship with that particular family or that particular patient, but yet you have to talk to them. Somebody gets transferred from another hospital and you have a very brief relationship. And so I think the relationship kind of dictates sometimes how patients feel. But as long as you can help people understand the process of end of life as best as you can, I think that sometimes helps the transition. Some people are going to be angry no matter what. And that’s totally understandable, angry about their family member dying, angry about what’s happening to them if they’re the patient. I think that’s always part of the process, but it’s hard to make things smooth all of the time. We do the best we can. Dr. Mikkael Sekeres: I was going to ask, has anyone ever been shocked when you start to talk about palliative care or hospice and never really did see it coming? Dr. Alice Cusick: Oh, of course. I think, especially if you’ve been doing this for a while, you sometimes see the future. You know what’s, well, I mean, not exactly, but you have a good sense of what’s going to happen. And there can be times when you start talking about end of life and palliative care or hospice and people are shocked, particularly family members, family members who may not be there all the time, who may not have seen their loved one frequently and haven’t just understood what the disease course has been. And that certainly can be shocking. And again, totally understandable, but it’s my responsibility to try to smooth that over and help people understand what’s going on and make it a conversation. Dr. Mikkael Sekeres: It’s a nice description of what we do. We make it a conversation. When talking about what you smelled that day when you saw your patient, you write, “Did I suddenly have a gift? Could I float through the hospital wards and smell the future? Or maybe I could only smell inevitability.” It’s a beautiful sentence. “Could I only smell inevitability?” What do you think it was that led you to know that his time had come? And I wonder, was it a distinct odor or what I refer to as a Malcolm Gladwell “blink” moment, you know, in which your 25 years of experience allowed you to synthesize a hundred different sensory and cognitive inputs in a split second to realize this was the time? Dr. Alice Cusick: I think I knew it was time because I had been seeing him so frequently and I knew him very well. The smell was very real to me. My husband and I disagree because I’ve talked to my husband about this. He thinks it was a real smell and that I did smell something. I think it was more that amalgamation of my experience and, as I said in the piece, a scent took the place of a thought. Dr. Mikkael Sekeres: Huh. Dr. Alice Cusick: But it bothered me so much, and that’s when I talk about, “Did I have a gift?” You know, there are people who can smell diseases. There’s a report of a woman who could smell Parkinson’s disease. I thought, “Have I suddenly developed some sort of gift?” But in my mind, I thought, “You know, it was inevitability.” I mean, it was inevitable that this gentleman was going to die of this disease. So that was my thought. I don’t think I had a gift. I think it was smelling the inevitability that I understood through experience and knowing this patient so well. Dr. Mikkael Sekeres: Why do you think that smell haunted you so much afterwards? I mean, you really think about it and really dwell on it. I think in a way that any one of us would. Dr. Alice Cusick: I think because I thought there was something wrong with me. As I said in the piece, I thought it made my experience of that patient, my memory of that visit in particular and the whole relationship with him, I was thinking more about myself instead of thinking about him and his experience and his family’s experience. And you know, you always grieve for patients, and it was interfering with my normal process. And so it really bothered me. In the end, it was more, “What was wrong with me?” This was weird, and it just sort of played with my usual understanding of how these things were supposed to go. And that’s what really bothered me. Dr. Mikkael Sekeres: It is true. We really feel acutely our patients’ loss, and it’s so much more, I don’t know if “acute” is the right word, or so much more meaningful when it’s someone we’ve gotten to know over years, isn’t it? Dr. Alice Cusick: Oh, very much so. You grieve for them, you miss them. At the same time, you also, you know, especially with this patient, his death was how he wanted it. So helping someone with the, quote unquote, “good death”, the death surrounded by family, the death where there is no suffering or as minimal suffering as possible, you do find that helps with the grief, I think, instead of thinking, “Oh, what did I do wrong? What did I miss?” You can make it somewhat helpful in processing the grief. Dr. Mikkael Sekeres: It’s perhaps one of the more exquisite aspects of the art of medicine is helping people with that transition in their final days and sharing in the emotions of that. It has been such a pleasure to have Alice Cusick, who is Hematology Section Chief at Veterans Affairs Ann Arbor Health System and Assistant Professor at the University of Michigan, Division of Hematology and Oncology to discuss “Smell.” Alice, thank you so much for submitting your article and for joining us today. Dr. Alice Cusick: Oh, thank you so much. I really appreciate it. Dr. Mikkael Sekeres: If you’ve enjoyed this episode, consider sharing it with a friend or colleague or leave us a review. Your feedback and support helps us continue to have these important conversations. If you’re looking for more episodes and context, follow our show on Apple, Spotify, or wherever you listen and explore more from ASCO at asco.org/podcasts. Until next time, this has been Mikkael Sekeres for Cancer Stories. 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: so you never miss an episode and leave a rating or review. Guest Bio: Dr Alice Cusick is Hematology Section Chief at Veterans Affairs Ann Arbor Health System and Assistant Professor at the University of Michigan Division of Hematology and Oncology. /episode/index/show/aoopodcast/id/39113890

Are You Bereaved? Allowing Yourself to Grieve a Patient 11/25/2025

Are You Bereaved? Allowing Yourself to Grieve a Patient Listen to JCO's Art of Oncology article, "” by Dr. Trisha Paul, who is an Assistant Professor in Pediatric Hematology/ Oncology and Palliative Care at University of Rochester Medical Center. The article is followed by an interview with Paul and host Dr. Mikkael Sekeres. Dr Paul reflects on a grieving father's question about her own bereavement. TRANSCRIPT Narrator: , by Trisha Paul, MD, MFA Dr. Mikkael Sekeres: Welcome back to JCO's Cancer Stories: The Art of Oncology. This ASCO podcast features intimate narratives and perspectives from authors exploring their experience in oncology. 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. Joining us today is Trisha Paul, an Assistant Professor in Pediatric Hematology Oncology and Palliative Care at University of Rochester Medical Center to discuss her Journal of Clinical Oncology article, "Are You Bereaved?" At the time of this recording, our guest has no disclosures. Trisha, thank you so much for contributing this terrific essay to the Journal of Clinical Oncology and for joining us to discuss your article. Dr. Trisha Paul: Thank you so much for having me today, Dr. Sekeres. Dr. Mikkael Sekeres: So we agreed for everyone listening to call each other by first names, and then Dr. Paul just called me Dr. Sekeres. Dr. Trisha Paul: Still adjusting to being an attending. Dr. Mikkael Sekeres: That is fantastic. Dr. Trisha Paul: Thank you so much for having me, Mikkael. Dr. Mikkael Sekeres: That was great. Well, you already gave us a little bit of a hint. Can we start off by my asking you if you can tell us about yourself - where are you from - and walk us through your career thus far? Dr. Trisha Paul: Sure. I'm originally from Ann Arbor, Michigan, born and raised there, and I completed my undergraduate medical school education at the University of Michigan. I proceeded to do a general pediatrics residency at the University of Minnesota and then went to St. Jude Children's Research Hospital for a combined fellowship in pediatric hematology oncology and hospice and palliative medicine. What brought me into this area of medicine was early experiences as a high school student volunteering at a children's hospital in my hometown. And that's where I found myself in a playroom, spending time with children with cancer and their families. And these experiences of being with patients and families and getting to know them outside of their illnesses was really what brought me to wanting to be not only a pediatric oncologist, but also a palliative care physician who could care for patients holistically. Dr. Mikkael Sekeres: Wow. So you were introduced to this field at a preternaturally young age. Dr. Trisha Paul: Yes, it's been more than a decade that I've been aspiring to be a pediatric oncologist and a palliative care physician, and I feel fortunate to be there now. Dr. Mikkael Sekeres: That's fantastic. And I should say, given your University of Michigan pedigree, ‘Go Blue’. Dr. Trisha Paul: Thank you. Go Blue! Dr. Mikkael Sekeres: Although, at the time of this recording, Miami is undefeated in football, so, you know, go us. In your essay, I really love how you draw us as readers into your story. You signed up to volunteer at a writing workshop for bereaved parents of children who died from cancer. Can you set the scene for us? Where did this take place? How many people attended? And why did you sign up for the workshop in the first place? I can imagine this would be an incredibly moving experience. Dr. Trisha Paul: Yes. Day of Remembrance is an annual event hosted at St. Jude Children's Research Hospital. Many hospitals have similar events where we honor patients who have passed away and we invite their families back to campus to honor these patients. And I started my fellowship in 2021, and so we were still coming out of the pandemic. This workshop that I attended was the first time that I was having an opportunity to attend the annual Day of Remembrance. And at the time, I had completed my palliative care training, and I was wrapping up my pediatric oncology fellowship. The annual Day of Remembrance this year was hosted at a convention center on the banks of the Mississippi River, nearby and next to St. Jude Children's Research Hospital. And it was a large convention center that kind of spans the horizon. And it's one of those spaces where you go for medical conferences typically, and it was interesting to walk into this convention center space and all these conference rooms and instead see poster boards that are sharing the stories and the lives of all these children and adolescents who had died over the past several years. One reason I think the timing of this event occurred for me was that I realized that I also knew several patients and families who might be in attendance at this event. I was several years into my fellowship at the time. And so I think the other reason I chose to volunteer at this event was I had spent a lot of time with patients and families whose child was approaching the end of their life, and I had kind of gotten to be with parents and siblings in that period of time. But what often happens for me as a palliative care physician and as an oncologist is the relationship is different after the child dies. And so for many of the patients I cared for as a palliative care physician, or as an oncologist, I wouldn't necessarily see these parents after the death of a child. There are some times where I've been able to see them at a memorial service, but otherwise we spend all this time with families leading up to a child's death. And often there's kind of this black box around them and their lives afterwards. And so I found myself really wanting to better understand the experiences of families after a child's death, which is what led me to participate and volunteer in the annual Day of Remembrance event. I did not want to just attend, I wanted to be able to do something concrete and actionable with these families to learn more about their grief. And for me, as a writer, volunteering at the writing workshop with bereaved parents seemed like a perfect way for me to be able to spend time with them. Dr. Mikkael Sekeres: Many of us as oncologists place boundaries between our interactions with patients, confining them to the workplace, but many do not. That you attended this workshop tells me that you may fall into the latter category. Was this a deliberate decision or something that evolved over time? And do you ever worry that erosion of such boundaries could contribute to burnout, or is it actually the opposite, that it reminds us of why we do what we do? Dr. Trisha Paul: Yeah, I think this is a great question that I have been asking myself for years and that I anticipate spending the rest of my career wondering about and rediscovering for myself each time I have a patient and a family before me that I am exploring what I want those boundaries to look like or what I want those relationships to look like. I think that for me, my thinking about this has evolved even throughout the course of my training. And I think I've better understood that these are decisions that are made on a very personal level as well as decisions that have to be reassessed with each patient and with each family that we get to care for during this time. And so I think I'm always asking myself about, beyond being an oncologist and beyond being a person's palliative care physician, how do I want to care for them as another person? Dr. Mikkael Sekeres: Really nicely said. Did you recognize any of the parents at the writing workshop you attended or at the larger conference when you were there? Dr. Trisha Paul: I did. Dr. Mikkael Sekeres: And what was that like, seeing them out of context? Dr. Trisha Paul: In this specific situation, I think it was a little bit jarring in the sense that it was kind of this surprise, that especially these are patients I had cared for in the past several years, and so there was a little bit of a moment to recognize and place them in where we had seen each other before. And then there was this fleeting wonder about whether they also recognized me. Some of these are patients that I might have met while on service as a palliative care physician for a brief visit or an initial consultation. And so for some of those families that I knew, there was less longevity to the ways in which I had known them. And it was curious to wonder if they remembered me and then to wonder about that memory. Dr. Mikkael Sekeres: Did any of them? Did any of them come up to you and say, "Oh, Dr. Paul, it's good to see you again," or, "Do you remember me?" Dr. Trisha Paul: No, I did not have that happen. Dr. Mikkael Sekeres: I think jarring is a really interesting word to use. A lot of our interactions are so contextual, and I find it difficult when I run into a patient or a family member and I'm outside of work and have to remind myself of, not so much who they are, but where they are in their treatment course. And sometimes you forget because it's out of the context of our clinic rooms. Dr. Trisha Paul: Mm hmm. I think that's exactly right. Dr. Mikkael Sekeres: The author and grieving father who led the workshop in your essay writes in your copy of his book that he thanks you for your work. The way you describe that and isolate that phrase in your essay is to the reader, I will use your word again, jarring. Why was that so jarring to you? Dr. Trisha Paul: It definitely felt jarring when I read those words in my book. There is something about the word work and kind of the connotations of work that separate it from a humanity of caring. It feels a little bit like an obligation or a task or a livelihood. Dr. Mikkael Sekeres: You think of what we do as a calling? Dr. Trisha Paul: I don’t think the phrase of it being a calling resonates with me personally that much. But it is more than just a thing I do. I think that's the problem with work. I think it's undermining why a lot of us choose to do this. Which I think for many people, kind of this idea of a calling is how they think of it. I think the calling implies there's a lot more choice than I actually feel. Ever since some of the first patients and families that I met within this space, I understood that these are the people I wanted to spend the rest of my life caring for. And I guess that kind of sounds like a calling. But... Dr. Mikkael Sekeres: I was not going to say it, but it sounds like a calling. You know that word, and I love how you reflect on semantics in this essay. The notion of a calling sounds so highfalutin and almost religious and as if we're being spoken to. But I don’t know. I think you could define it as something that just feels right to you and something that you should be doing and that you fall into and you do not have as much deliberate choice in going into this field, but everything just feels right about it. Dr. Trisha Paul: I think that's exactly it. So I think it's just that you do not really question- for people who choose to do this work and to be with these patients and families, a lot of us from the time we arrive at the realization that this is what we want to do, we don’t find ourselves really questioning it in a concrete sense because we understand it. It makes sense to us. Dr. Mikkael Sekeres: I think that's a great summary of that. It just makes sense to us. Dr. Trisha Paul: I think it's a mysterious idea to so many other people who don’t do this work. And that's part of why it's interesting to a lot of people who just respond and say, "Oh, I can't imagine how you do this." Dr. Mikkael Sekeres: Well, it just feels as if we're contributing something so substantive to humanity by focusing on hematology, oncology, and particularly palliative care. I don’t know about you, I do not know if you have children. I have certainly tried to impart to my children to do something meaningful, to do something that makes other people's lives better with whatever career they choose, because it's so meaningful not just to ourselves, but to other people. Dr. Trisha Paul: Mm hmm. Dr. Mikkael Sekeres: We are talking about semantics. In your essay, you reflect on the notion of bereavement. Should we, as medical caregivers, cop to being bereaved, or are we misappropriating a word that really wholly belongs to close family members and friends of a person with cancer? Dr. Trisha Paul: Yes. And I think that this essay was me kind of struggling to wrap my mind around what this question means and kind of what my own reactions to this idea of what it would look like and feel like to call ourselves bereaved. And I don’t have an answer to this question. I think it's a question that everyone in this work should consider and think about and what it means for them as an individual. Dr. Mikkael Sekeres: Are there patients you have lost whom you think about even one, two, three years later on a regular basis? Dr. Trisha Paul: Yes, I would definitely say so. I am early in my career, but I anticipate that that is kind of an essential way in which I do this work. It's part of my own practice, and it's dependent on each patient, but I find ways that I keep their legacy alive in my life. Dr. Mikkael Sekeres: Yeah. I thought a lot about your essay since I first read it, and I think it's okay to say that we grieve the loss of our patients. I think that is a form of bereavement. Dr. Trisha Paul: I think so too. I think that it was interesting to realize my own hesitation about specifically calling ourselves bereaved when we do, as clinicians, talk about grief and secondary grief and something about using the language of grief and grieving feels more appropriate and within our purview as clinicians. But something about specifically identifying as bereaved felt like a different step. Dr. Mikkael Sekeres: It's closer, isn’t it? I don’t know, it feels like more of a personal relationship rather than a professional relationship to be bereaved. Dr. Trisha Paul: And I think that that's simultaneously terrifying and empowering as a way of acknowledging what the loss of a patient can do to us and also honoring the affection we have for people we care for. Dr. Mikkael Sekeres: I hope it's okay that we end on that phrase that you just said: It's both terrifying and empowering to admit to being bereaved and to feel that closeness to one of our patients. It has been such a pleasure to have Trisha Paul, who is an Assistant Professor in Pediatric Hematology, Oncology, and Palliative Care at the University of Rochester Medical Center to discuss her essay, "Are You Bereaved?" Trisha, thank you so much for submitting your article and for joining us today for this enlightening conversation. Dr. Trisha Paul: Thank you so much. Dr. Mikkael Sekeres: If you have enjoyed this episode, consider sharing it with a friend or colleague or leave us a review. Your feedback and support helps us continue to have these important conversations. If you are looking for more episodes and context, follow our show on Apple, Spotify, or wherever you listen, and explore more from ASCO at asco.org/podcasts. Until next time, this has been Mikkael Sekeres for Cancer Stories. 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: so you never miss an episode and leave a rating or review. Guest Bio: Dr Trisha Paul is an Assistant Professor in Pediatric Hematology/ Oncology and Palliative Care at University of Rochester Medical Center. /episode/index/show/aoopodcast/id/39028045

The Man at the Bow: Remembering the Lives People Lived Prior to Cancer 11/11/2025

The Man at the Bow: Remembering the Lives People Lived Prior to Cancer Listen to JCO's Art of Oncology article, "” by Dr. Alexis Drutchas, who is a palliative care physician at Dana Farber Cancer Institute. The article is followed by an interview with Drutchas and host Dr. Mikkael Sekeres. Dr. Drutchas shares the deep connection she had with a patient, a former barge captain, who often sailed the same route that her family’s shipping container did when they moved overseas many times while she was growing up. She reflects on the nature of loss and dignity, and how oncologists might hold patients’ humanity with more tenderness and care, especially at the end of life. TRANSCRIPT Narrator: , by Alexis Drutchas, MD It was the kind of day that almost seemed made up—a clear, cerulean sky with sunlight bouncing off the gold dome of the State House. The contrast between this view and the drab hospital walls as I walked into my patient’s room was jarring. My patient, whom I will call Suresh, sat in a recliner by the window. His lymphoma had relapsed, and palliative care was consulted to help with symptom management. The first thing I remember is that despite the havoc cancer had wreaked—sunken temples and a hospital gown slipping off his chest—Suresh had a warm, peaceful quality about him. Our conversation began with a discussion about his pain. Suresh told me how his bones ached and how his fatigue left him feeling hollow—a fraction of his former self. The way this drastic change in his physicality affected his sense of identity was palpable. There was loss, even if it was unspoken. After establishing a plan to help with his symptoms, I pivoted and asked Suresh how he used to spend his days. His face immediately lit up. He had been a barge captain—a dangerous and thrilling profession that took him across international waters to transport goods. Suresh’s eyes glistened as he described his joy at sea. I was completely enraptured. He shared stories about mornings when he stood alone on the bow, feeling the salted breeze as the barge moved through Atlantic waves. He spoke of calm nights on the deck, looking at the stars through stunning darkness. He traveled all over the globe and witnessed Earth’s topography from a perspective most of us will never see. The freedom Suresh exuded was profound. He loved these voyages so much that one summer, despite the hazards, he brought his wife and son to experience the journey with him. Having spent many years of my childhood living in Japan and Hong Kong, my family’s entire home—every bed, sheet, towel, and kitchen utensil—was packed up and crossed the Atlantic on cargo ships four times. Maybe Suresh had captained one, I thought. Every winter, we hosted US Navy sailors docked in Hong Kong for the holidays. I have such fond memories of everyone going around the table and sharing stories of their adventures—who saw or ate what and where. I loved those times: the wild abandon of travel, the freedom of being somewhere new, and the way identity can shift and expand as experiences grow. When Suresh shared stories of the ocean, I was back there too, holding the multitude of my identity alongside him. I asked Suresh to tell me more about his voyages: what was it like to be out in severe weather, to ride over enormous swells? Did he ever get seasick, and did his crew always get along? But Suresh did not want to swim into these perilous stories with me. Although he worked a difficult and physically taxing job, this is not what he wanted to focus on. Instead, he always came back to the beauty and vitality he felt at sea—what it was like to stare out at the vastness of the open ocean. He often closed his eyes and motioned with his hands as he spoke as if he was not confined to these hospital walls. Instead, he was swaying on the water feeling the lightness of physical freedom, and the way a body can move with such ease that it is barely perceptible, like water flowing over sand. The resonances of Suresh’s stories contained both the power and challenges laden in this work. Although I sat at his bedside, healthy, my body too contained memories of freedom that in all likelihood will one day dissipate with age or illness. The question of how I will be seen, compared to how I hoped to be seen, lingered in my mind. Years ago, before going to medical school, I moved to Vail, Colorado. I worked four different jobs just to make ends meet, but making it work meant that on my days off, I was only a chairlift ride away from Vail’s backcountry. I have a picture of this vigor in my mind—my snowboard carving into fresh powder, the utter silence of the wilderness at that altitude, and the way it felt to graze the powdery snow against my glove. My face was windburned, and my body was sore, but my heart had never felt so buoyant. While talking with Suresh, I could so vividly picture him as the robust man he once was, standing tall on the bow of his ship. I could feel the freedom and joy he described—it echoed in my own body. In that moment, the full weight of what Suresh had lost hit me as forcefully as a cresting wave—not just the physical decline, but the profound shift in his identity. What is more, we all live, myself included, so precariously at this threshold. In this work, it is impossible not to wonder: what will it be like when it is me? Will I be seen as someone who has lived a full life, who explored and adventured, or will my personhood be whittled down to my illness? How can I hold these questions and not be swallowed by them? “I know who you are now is not the person you’ve been,” I said to Suresh. With that, he reached out for my hand and started to cry. We looked at each other with a new understanding. I saw Suresh—not just as a frail patient but as someone who lived a full life. As someone strong enough to cross the Atlantic for decades. In that moment, I was reminded of the Polish poet, Wislawa Szymborska’s words, “As far as you’ve come, can’t be undone.” This, I believe, is what it means to honor the dignity of our patients, to reflect back the person they are despite or alongside their illness…all of their parts that can’t be undone. Sometimes, this occurs because we see our own personhood reflected in theirs and theirs in ours. Sometimes, to protect ourselves, we shield ourselves from this echo. Other times, this resonance becomes the most beautiful and meaningful part of our work. It has been years now since I took care of Suresh. When the weather is nice, my wife and I like to take our young son to the harbor in South Boston to watch the planes take off and the barges leave the shore, loaded with colorful metal containers. We usually pack a picnic and sit in the trunk as enormous planes fly overhead and tugboats work to bring large ships out to the open water. Once, as a container ship was leaving the port, we waved so furiously at those working on board that they all started to wave back, and the captain honked the ships booming horn. Every single time we are there, I think of Suresh, and I picture him sailing out on thewaves—as free as he will ever be. Mikkael Sekeres: Welcome back to JCO's Cancer Stories: The Art of Oncology. This ASCO podcast features intimate narratives and perspectives from authors exploring their experiences in oncology. 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 treat we have today. We're joined by Dr. Alexis Drutchas, a Palliative Care Physician and the Director of the Core Communication Program at the Dana-Farber Cancer Institute, and Assistant Professor of Medicine at Harvard Medical School to discuss her article, "The Man at the Bow." Alexis, thank you so much for contributing to Journal of Clinical Oncology and for joining us to discuss your article. Dr. Alexis Drutchas: Thank you. I'm thrilled and excited to be here. Mikkael Sekeres: I wonder if we can start by asking you about yourself. Where are you from, and can you walk us a bit through your career? Dr. Alexis Drutchas: The easiest way to say it would be that I'm from the Detroit area. My dad worked in automotive car parts and so we moved around a lot when I was growing up. I was born in Michigan, then we moved to Japan, then back to Michigan, then to Hong Kong, then back to Michigan. Then I spent my undergrad years in Wisconsin and moved out to Colorado to teach snowboarding before medical school, and then ended up back in Michigan for that, and then on the east coast at Brown for my family medicine training, and then in Boston for work and training. So, I definitely have a more global experience in my background, but also very Midwestern at heart as well. In terms of my professional career trajectory, I trained in family medicine because I really loved taking care of the whole person. I love taking care of kids and adults, and I loved OB, and at the time I felt like it was impossible to choose which one I wanted to pursue the most, and so family medicine was a great fit. And at the core of that, there's just so much advocacy and social justice work, especially in the community health centers where many family medicine residents train. During that time, I got very interested in LGBTQ healthcare and founded the Rhode Island Trans Health Conference, which led me to work as a PCP at Fenway Health in Boston after that. And so I worked there for many years. And then through a course of being a hospitalist at BI during that work, I worked with many patients with serious illness, making decisions about discontinuing dialysis, about pursuing hospice care in the setting of ILD. I also had a significant amount of family illness and started to recognize this underlying interest I had always had in palliative care, but I think was a bit scared to pursue. But those really kind of tipped me over to say I really wanted to access a different level of communication skills and be able to really go into depth with patients in a way I just didn't feel like I had the language for. And so I applied to the Harvard Palliative Care Fellowship and luckily and with so much gratitude got in years ago, and so trained in palliative care and stayed at MGH after that. So my Dana-Farber position is newer for me and I'm very excited about it. Mikkael Sekeres: Sounds like you've had an amazing career already and you're just getting started on it. I grew up in tiny little Rhode Island and, you know, we would joke you have to pack an overnight bag if you travel more than 45 minutes. So, our boundaries were much tighter than yours. What was it like growing up where you're going from the Midwest to Asia, back to the Midwest, you wind up settling on the east coast? You must have an incredible worldly view on how people live and how they view their health. Dr. Alexis Drutchas: I think you just named much of the sides of it. I think I realize now, in looking back, that in many ways it was living two lives, because at the time it was rare from where we lived in the Detroit area in terms of the other kids around us to move overseas. And so it really did feel like that part of me and my family that during the summers we would have home leave tickets and my parents would often turn them in to just travel since we didn't really have a home base to come back to. And so it did give me an incredible global perspective and a sense of all the ways in which people develop community, access healthcare, and live. And then coming back to the Midwest, not to say that it's not cosmopolitan or diverse in its own way, but it was very different, especially in the 80s and 90s to come back to the Midwest. So it did feel like I carried these two lenses in the world, and it's been incredibly meaningful over time to meet other friends and adults and patients who have lived these other lives as well. I think for me those are some of my most connecting friendships and experiences with patients for people who have had a similar experience in living with sort of a duality in their everyday lives with that. Mikkael Sekeres: You know, you write about the main character of your essay, Suresh, who's a barge captain, and you mention in the essay that your family crossed the Atlantic on cargo ships four times when you were growing up. What was that experience like? How much of it do you remember? Dr. Alexis Drutchas: Our house, like our things, crossed the Atlantic four times on barge ships such as his. We didn't, I mean we crossed on airplanes. Mikkael Sekeres: Oh, okay, okay. Dr. Alexis Drutchas: We flew over many times, but every single thing we owned got packed up into containers on large trucks in our house and were brought over to ports to be sent over. So, I'm not sure how they do it now, but at the time that's sort of how we moved, and we would often go live in a hotel or a furnished apartment for the month's wait of all of our house to get there, which felt also like a surreal experience in that, you know, you're in a totally different country and then have these creature comforts of your bedroom back in Metro Detroit. And I remember thinking a lot about who was crossing over with all of that stuff and where was it going, and who else was moving, and that was pretty incredible. And when I met Suresh, just thinking about the fact that at some point our home could have been on his ship was a really fun connection in my mind to make, just given where he always traveled in his work. Mikkael Sekeres: It's really neat. I remember when we moved from the east coast also to the Midwest, I was in Cleveland for 18 years. The very first thing we did was mark which of the boxes had the kids' toys in it, because that of course was the first one we let them close it up and then we let them open it as soon as we arrived. Did your family do something like that as well so that you can, you know, immediately feel an attachment to your stuff when they arrived? Dr. Alexis Drutchas: Yeah, I remember what felt most important to our mom was our bedrooms. I don't remember the toys. I remember sort of our comforters and our pillowcases and things like that, yeah, being opened and it feeling really settling to think, "Okay, you know, we're in a completely different place and country away from most everything we know, but our bedroom is the same." That always felt like a really important point that she made to make home feel like home again in a new place. Mikkael Sekeres: Yeah, yeah. One of the sentences you wrote in your essay really caught my eye. You wrote about when you were younger and say, "I loved those times, the wild abandon of travel, the freedom of being somewhere new, the way identity can shift and expand as experiences grow." It's a lovely sentiment. Do you think those are emotions that we experience only as children, or can they continue through adulthood? And if they can, how do we make that happen, that sense of excitement and experience? Dr. Alexis Drutchas: I think that's such a good question and one I honestly think about a lot. I think that we can access those all the time. There's something about the newness of travel and moving, you know, I have a 3-year-old right now, and so I think many parents would connect to that sense that there is wonderment around being with someone experiencing something for the first time. Even watching my son, Oliver, see a plane take off for the first time felt joyous in a completely new way, that even makes me smile a lot now. But I think what is such a great connection here is when something is new, our eyes are so open to it. You know, we're constantly witnessing and observing and are excited about that. And I think the connection that I've realized is important for me in my work and also in just life in general to hold on to that wonderment is that idea of sort of witnessing or having a writer's eye, many would call it, in that you're keeping your eye open for the small beautiful things. Often with travel, you might be eating ramen. It might not be the first time you're eating it, but you're eating it for the first time in Tokyo, and it's the first time you've had this particular ingredient on it, and then you remember that. But there's something that we're attuned to in those moments, like the difference or the taste, that makes it special and we hold on to it. And I think about that a lot as a writer, but also in patient care and having my son with my wife, it's what are the special small moments to hold on to and allowing them to be new and beautiful, even if they're not as large as moving across the country or flying to Rome or whichever. I think there are ways that that excitement can still be alive if we attune ourselves to some of the more beautiful small moments around us. Mikkael Sekeres: And how do we do that as doctors? We're trained to go into a room and there's almost a formula for how we approach patients. But how do you open your mind in that way to that sense of wonderment and discovery with the person you're sitting across from, and it doesn't necessarily have to be medical? One of the true treats of what we do is we get to meet people from all backgrounds and all walks of life, and we have the opportunity to explore their lives as part of our interaction. Dr. Alexis Drutchas: Yeah, I think that is such a great question. And I would love to hear your thoughts on this too. I think for me in that sentence that you mentioned, sitting at that table with sort of people in the Navy from all over the world, I was that person to them in the room, too. There was some identity there that I brought to the table that was different than just being a kid in school or something like that. To answer your question, I wonder if so much of the challenge is actually allowing ourselves to bring ourselves into the room, because so much of the formula is, you know, we have these white coats on, we have learners, we want to do it right, we want to give excellent care. There's there's so many sort of guards I think that we put up to make sure that we're asking the right questions, we don't want to miss anything, we don't want to say the wrong thing, and all of that is true. And at the same time, I find that when I actually allow myself into the room, that is when it is the most special. And that doesn't mean that there's complete countertransference or it's so permeable that it's not in service of the patient. It just means that I think when we allow bits of our own selves to come in, it really does allow for new connections to form, and then we are able to learn about our patients more, too. With every patient, I think often we're called in for goals of care or symptom management, and of course I prioritize that, but when I can, I usually just try to ask a more open-ended question, like, "Tell me about life before you came to the hospital or before you were diagnosed. What do you love to do? What did you do for work?" Or if it's someone's family member who is ill, I'll ask the kids or family in the room, "Like, what kind of mom was she? You know, what special memory you had?" Just, I get really curious when there's time to really understand the person. And I know that that's not at all new language. Of course, we're always trying to understand the person, but I just often think understanding them is couched within their illness. And I'm often very curious about how we can just get to know them as people, and how humanizing ourselves to them helps humanize them to us, and that back and forth I think is like really lovely and wonderful and allows things to come up that were totally unexpected, and those are usually the special moments that you come home with and want to tell your family about or want to process and think about. What about you? How do you think about that question? Mikkael Sekeres: Well, it's interesting you ask. I like to do projects around the house. I hate to say this out loud because of course one day I'll do... /episode/index/show/aoopodcast/id/38808440

Reflection: When Cancer Affects a Family Member 10/30/2025

Reflection: When Cancer Affects a Family Member Listen to JCO's Art of Oncology article, "” by Dr. Jamie Riches, who is an Assistant Professor at Columbia University and Director of the Hematology Oncology Hospitalist Service. The article is followed by an interview with Riches and host Dr. Mikkael Sekeres. Dr Riches shares a deeply personal narrative, reflecting on the profound personal and professional impact of losing her young family member to cancer, illuminating the intimate intersection of grief, loss, and healing. TRANSCRIPT Narrator: , by Jaime C. Riches, DO If I stand this way, with my shoulders back, my chin lifted, if I hold my breath for a moment, my skin fits my bones just right. Each subtle motion is an effort to make my clavicle more prominent, to manifest my ribs. I feel so ignorant about beauty. I was at the side of her hospital bed as she uncovered herself and asked me to look away. Her eyes, glassy and hollow, met mine. “I’m so ugly right now.” It’s an interesting piece of practicing medicine, to be an observer of bodies, their look, their feel, and their function. Which lines are strength and which are fatigue…which ones are scars and how they have healed. My words were soft and aching, “You are beautiful” I said, knowing that her skin fits her bones too tight. They are almost all that’s left. My 38-year-old cousin’s oncologist is my colleague, my friend. When she was diagnosed, he reminded me that there were excellent treatments available. I reminded him that none of them would allow her to see her children start kindergarten. Redefining excellence, I thought, sounded like a cancer center’s marketing strategy that just missed the mark. As I looked away, a piece of me splintered. It isn’t the same when it’s someone you know, when it’s someone you love. Maybe I feel shame for underappreciating my own fertile marrow, my fat and muscle, and my own existence. Maybe it’s guilt for dedicating my whole life to work that can’t save her, for being the one to look her mother in the eye and say she can’t be saved. Maybe, just sadness. This lonely world, that only exists right at the bedside, is like a magically devastating song and I am humming the rhythmic asynchrony of being a doctor, and just being. “From where do we yearn?,” I wonder. It’s from within these little spaces we look to fill the absence of something beautiful. The moments that we’re longing to be a part of. We are all mothers—the seven of us now in her room, aunts and cousins united by a last name—by the successes and losses we previously thought unimaginable. We’ve known the brittle anticipation of a new life, the longing, the joy of spending time, and the sense of simply existing in these spaces. We are the daughters and sisters of firefighters. We are women who know the low bellow of the bagpipes, women who own “funeral clothes.” We’ve tried to disinherit the same shades of blue, and all of our distance has brought us right here, where they’re making her comfortable. She knows that her time has been spent. Her eyes are the color of her favorite flower, a yellow rose, and her once sterile room appears almost sunlight by the garden of bouquets. Her mother is sitting by her side, gently moving her fingers across what would be a hairline, the way you would touch a newborn in those moments when you’re just realizing you didn’t know you could love someone so much. There’s a song running through my head, “Golden Slumbers” (The Beatles, Abbey Road, 1969). Even playing in my memory, it gives me chills, starting right beneath my jaw and circulating through my limbs. Once, there was a way To get back homeward Once, there was a way To get back home Sleep, pretty darling, do not cry And I will sing a lullaby Nothing illustrates the frailty of existence like a mother preparing for her inevitable goodbye. Once you see it, you can be certain that biology is imperfect. We’re convinced that we’re grieving throughout the whole of motherhood, as our babies become grown people of their own, as they live their lives. But it isn’t grief. We’re simply living a life that is singular, in a series of moments that are final. “Golden Slumbers” doesn’t actually seem to end. It just subtly transforms into the next track as if they were one, and before the chills are fully absorbed, you’re struck by something totally new…triumphant trumpets. When her breath stopped, it wasn’t held. I don’t think she realized the bravery it took to leave this world with such grace, to be unlonely. I’ve been witness to so many punctuated pulseless yawns, but not this one. I wish I knew by which of these wounds am I softened and by which I am hardened, but I don’t. They heal, with secondary intention, naturally and slowly, from the inside out. Mikkael Sekeres: Welcome back to JCO's Cancer Stories: The Art of Oncology. This ASCO podcast features intimate narratives and perspectives from authors exploring their experiences in oncology. 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 Jamie Riches, who is Assistant Professor at Columbia University and Director of the Hematology Oncology Hospitalist Service. We'll be discussing her absolutely gorgeous article, "Reflection." At the time of this recording, our guest has no disclosures. Jamie, I want to thank you so much for contributing your essay to the Journal of Clinical Oncology, and welcome you to discuss your article. Jamie Riches: Thank you so much for having me. Mikkael Sekeres: I have to say, I was so moved by this and just loved the writing. I don't drop the ‘G word’, gorgeous, very often when describing pieces, but this was truly moving and truly lovely. Jamie Riches: Thank you. Thank you so much. It was a really deeply personal story to me. Mikkael Sekeres: So I wonder if you can tell us a little bit about yourself. Where are you from, and walk us through your career? For example, where did you do your training? Jamie Riches: Well, I am from Brooklyn, New York, and I did my training at an osteopathic medical school in Harlem called Touro, and my residency training at what used to be called St. Luke's-Roosevelt, and now is Mount Sinai West after many of the New York City mergers. I did a chief resident year at Memorial Sloan Kettering and started my oncology hospitalist career there for many years and have been at Columbia now for three years. Mikkael Sekeres: Wonderful. Isn't it interesting how the institutions of our youth are no longer, and that seems to happen at a faster and faster pace? Jamie Riches: I know. I feel the need to reference the old name sometimes when I'm discussing it. Mikkael Sekeres: Can you tell us a little bit about your own story as a writer? How long have you been writing reflective or narrative pieces? Jamie Riches: I have probably always been a jotter. I think that's for as long as I can remember, and I've enjoyed that process. And I think once I was an undergrad, I studied chemistry, I majored in chemistry, but I really filled up a bunch of elective time with writing classes and learning what I could about the processes of writing. And I guess almost 10 years ago now, I enrolled in the graduate certificate program in Narrative Medicine at Columbia. And that program helped me explore a little bit in terms of form and function and in terms of really relating my writing to my own personal experience as a physician. Mikkael Sekeres: And if I'm not mistaken, the field of narrative medicine was really in part born at Columbia, wasn't it? Jamie Riches: It was. Yeah. Rita Charon was the founder of the practice as a field, yeah. Mikkael Sekeres: And what was it that that experience- what did the formal training teach you that you couldn't have figured out on your own by the iterative process of reading and writing? Jamie Riches: I think there's something to having a group of people critiquing you that really allows you to become better in any field, in any practice. And I think there's something to having a, you know, a relatively safe space to explore different ways of doing something. For example, writing poetry, which I really hadn't done much of before and have done a bit of since. I think having a space where there are both educated critics and experts being able to look at your work and say, "This is working and this isn't," was really helpful for me. Mikkael Sekeres: You know, I've heard with writing, the notion that your first critics should be people you trust and feel as if you're in a safe space with because you're so vulnerable with writing. Even exposing it to relative strangers in a formal course can be, I don't want to use the word damaging, but I guess damaging, or at least get you out of a safe space that you need for writing. Do you have an inner circle that you trust for your writing? Jamie Riches: I do. I do. Mikkael Sekeres: If you feel comfortable doing so, can you tell us what prompted you to write this piece? Jamie Riches: This piece just sort of came out. This piece is real, and it's a real experience, and the processing of this experience has happened on so many different planes for me, and writing is really one of them. And once I sat down and said, "Let me write some of this down," it just kind of poured out. Mikkael Sekeres: Sometimes we write to process. I once heard somebody say that writing is the only time in life when you get a free redo, right, or a do over. We say something or we post something on social, and it's out there in the universe. But with writing, it's very personal, and we can look at a paragraph or a sentence and say, "Gee, that just doesn't feel right," and rework it if it's not communicating exactly what I was hoping it would. The other aspect of writing, of course, is that it allows us to ruminate on something that's just occurred and to try to make sense of it. Do you think that was some basis for writing this? Jamie Riches: I think so. And I think maybe just relating one really specific experience into the greater realm of the work that we do every day, and how that experience both stood on its own, but also is woven into so many other patient encounters and encounters with families. And that's a form of processing, I think, for sure. Mikkael Sekeres: Can you tell us in your own words about the main character in this piece and what was going on? Because you write it in a lovely way that allows the reader to discover what's transpiring gradually, but if you could tell us in your own words, who is this person? Jamie Riches: Yeah. So the person that I'm talking to in some parts of the story and talking about in much of the story is my cousin, Patrice, who was diagnosed with bladder cancer at 38 years old and who has had interactions with the medical field as a patient but is not a physician, is not a medical professional, and so had a lot of questions and a lot of trust and reliance on those of us in the family who had some medical knowledge and experience. And so I wound up being pretty intimately involved in her care as a family member, and that was really a fine line in a lot of ways because my friends and colleagues were the care team, and I was the family member. And many of us have been in that position in many different ways, but it's always a fine line. And she was young, and she was very positive throughout really the course of her illness. She had twins who were two years old at the time of her diagnosis. And I think, I'm a little bit speechless now, as you can see, I think she just was so incredibly graceful, and I think I used this word in the story, throughout the entirety of her illness, which included multiple lengthy hospitalizations where she had spent time away from her children. And I still don't know how she did it with the patience and the thoughtfulness and the love for everyone else that she did. Mikkael Sekeres: You really honor her in this piece and paint such a beautiful portrait of her. In the essay, you write, "It's an interesting piece of practicing medicine to be an observer of bodies, their look, their feel, their function. Which lines are strength and which are fatigue, which ones are scars and how they've healed." It's a beautiful couple of sentences. In this case, you aren't really playing the role of doctor, are you? Can you talk a little bit more about when that line's blurred between being a family member and and the practice of medicine when people are relying on you to help out with their medical care? Jamie Riches: Yeah, I think most of us know this gray area fairly well, and the gravity of the situation really dictates how blurry the line is. And it's true, I wasn't the doctor in this situation, and I had as much information about the scans and the clinical picture and the day to day trajectory and the lab results and the toxicity profiles and the data from the studies that the regimens were approved based on. And that made it impossible to step out of the doctor role or mentality, and I also wasn't making the formal recommendations by any means, but I think it's hard to sort of exempt yourself from that space once you're in it. Mikkael Sekeres: Yeah. I think we also sometimes don't realize how even the smallest contribution we have in advising somebody about their medical care becomes very, very meaningful and how much those words can have an effect on somebody. I recall my uncle was diagnosed with acute leukemia, so that's right in my bailiwick, of course. And I remember talking with him about transplant and being as neutral as humanly possible about whether he should proceed with the transplant given the characteristics of his leukemia. And months later, after he had gone through the transplant, he said, "You know, I went through this even though you really advised me not to." So as neutral and trying not to sway someone and giving advice as we are, people hear us differently. Did you find that also with your cousin? Jamie Riches: I did. I phoned into one of her oncologist appointments, and her oncologist, who I have to say is wonderful and who I have the utmost respect and really love for, who took great care in taking care of her, went through in detail everything they could about her disease and about treatment options and really explained everything, and took a minute and said, "Okay, do you have any questions?" And my cousin said, "No, whatever Jamie thinks." So I said, "Okay, well, we'll chat a little bit later." But that made me realize, which I think I just hadn't before, how much having an opinion matters. Mikkael Sekeres: Yeah, and that it's a gift to people when they can cede some of that decision making or some of that knowledge to somebody else and feel as if they don't have to take it on themselves. Jamie Riches: Yeah. Mikkael Sekeres: I want to read one other quote from your piece. I could just reread the whole piece, I enjoyed it so much and keep quoting it. You write, "We've known the brittle anticipation of a new life, the longing, the joy of spending time, the sense of simply existing in these spaces. We are the daughters and sisters of firefighters. We are women who know the low bellow of the bagpipes. Women who own funeral clothes." There's a lot that swims beneath the surface, I think, in that quote, that family members get together at births and deaths, that these become the occasions for the family to get together, that we put on uniforms for them, and that they happen frequently enough that we actually own the uniform to be part of them. Is that what defines us as families? Is that what we've come to? Or how about us as physicians? We own uniforms as physicians also. Are the gatherings, the only gatherings we have with our colleagues at tumor boards when we discuss successes and failures of our patients? Jamie Riches: That's a great question and a great reading, and thank you for these questions. I think every family is different, obviously, and I won't speak for the masses here, but there is a bit of a structure to the events that you're expected to attend and that you're expected to not be absent for, to sort of show up for. And those events are sort- you're right, you know, births and funerals and weddings, and they have a bit of a code to them. And as physicians, it's interesting to think about things like tumor board as the gathering spaces, because although as colleagues we're not families, we are the closest thing to going through some of these moments together. And I think these moments at the bedside, and I use that term so often because I work in the hospital, and I am literally often sitting in a hospital bed holding someone's hand, talking to them. Those are the moments that we feel. We feel them in our bodies. I can feel it right here, and I'm touching my chest when I say that. I don't get that same visceral feeling from looking at most scans, looking at most lab reports, or even having academic conversations with people. And I think that you're right, things like tumor board or even other academic conferences really are the gathering spaces for physicians, but that makes me question if those are the spaces that matter most. Mikkael Sekeres: I think that's a great point also to end our time together. It has been such a true, true pleasure to have Jamie Riches on our JCO Cancer Stories podcast to talk about her gorgeous piece, "Reflection." Dr. Riches is Assistant Professor at Columbia University and Director of the Hematology Oncology Hospitalist Service. Thank you so much again for submitting your piece to us. Jamie Riches: Thank you so much. Mikkael Sekeres: And thank you to our listeners for choosing JCO Cancer Stories: The Art of Oncology. If you've enjoyed this episode, consider sharing it with a friend or colleague or leave us a review. Your feedback and support helps us continue to have these important conversations. If you're looking for more episodes and context, follow our show on Apple, Spotify, or wherever you listen and explore more from ASCO at asco.org/podcasts. Until next time, this has been Mikkael Sekeres. 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: so you never miss an episode and leave a rating or review. Guest Bio: Dr Jamie Riches is an Assistant Professor at Columbia University and Director of the Hematology Oncology Hospitalist Service. /episode/index/show/aoopodcast/id/38527425

A Fight Bigger than Myeloma: Race Relations and Bias in Medicine 10/14/2025

A Fight Bigger than Myeloma: Race Relations and Bias in Medicine Listen to JCO's Art of Oncology article, "” by Dr. Adeel Khan, an Assistant Professor of Medicine and Public Health at UT Southwestern. The article is followed by an interview with Dr. Adeel Khan and host Dr. Mikkael Sekeres. Dr. Khan shares the story of a patient whose multiple myeloma diagnosis and treatment serves as a reminder of the civil liberties progress we've made and that we have more to go. TRANSCRIPT Narrator: , by Adeel M. Khan, MD, MPH, MS I met her during the early part of my clinical training in hematology/oncology. She was in her late 70s, dressed in a rust-colored cardigan and a headwrap with patterns that reminded me of Ghanaian kente cloth. Her eyes were sharp, her tone polite but direct. You could tell from the moment she spoke that she had lived a life where she had to advocate—for herself, for her family, for her place in rooms that were not always welcoming. Her chart said “multiple myeloma, R-ISS II,” but it did not say that she had first come to an emergency room at least a year earlier complaining of back pain and fatigue and had been told it was probably arthritis or old age. It did not mention that she had seen three different doctors before someone ordered the laboratory tests that finally began to work up her anemia and increasingly compromised kidney function. It would take another trio of doctors to eventually order a magnetic resonance imaging whose ghostly lytic lesions led down the path to a bone marrow biopsy and her cancer diagnosis. When I brought this up gently during one of our early appointments, she looked at me and said, “They don’t hear pain the same when it comes from someone like me.” As a Black woman from the Deep South, she had grown up learning how to navigate a health care system that did not always believe her. She told me stories about being dismissed, misdiagnosed, and interrupted. She was born into an era of structural violence where she would be ignored at best and mistreated at worst. She carried the weight of those moments, but she also carried strength, and clarity, and the kind of dignity that made people sit up straighter in their leather chairs when she entered the room. She was one of the most quietly revolutionary people I have ever known, having grown up during a time of civil rights activism. She had even taken part in bending Dr King’s long arc of the moral universe toward justice and could share story upon story from her glory days. Her myeloma treatments were not easy. Chemotherapy rarely is. She shared that there were days when her body was tired of fighting, when her bones ached, her blood counts dropped, and her neuropathic pain throbbed. In the back of my mind, I thought how tragic it was that her delayed diagnosis added unnecessary complications and whether she too thought of that. She was fully mindful of the issues people with her skin color faced in our American healthcare system and society as a whole and revealed how that motivated her to carry forward. “If I don’t take up space here,” she told me once, “then someone else like me won’t either.” Over the course of our visits, I came to understand that she did not see her myeloma as the hardest fight of her life. Not by a long shot. Her primary struggle was centered on life in Birmingham in the 1950s where separate but equal was still the law of the land; her mother cleaned houses, her father worked odd jobs, and her own prospects were uncertain. She admired the writings of Richard Wright and Jean Toomer and was not shy in sharing her passions. One day, during a particularly tough visit—her disease had progressed and we were down to limited options—I found myself meandering. We went through the usual workup and discussions: laboratory test results, symptoms, and treatment options. I offered the prospect of clinical trials, but she shook her head gently and said, “I’ve done my time in experiments—I can’t give myself to a system that gave my people so little.” I paused. It was the first hint of what would become a larger conversation—not just about medicine, but about history. She was well aware of the atrocities of the Tuskegee syphilis trials in her home state, the Kligman experiments on incarcerated Black men, and the forced sterilization of women of color. As dependent upon medicine as she was in her old age, it carried a bloody stain of dehumanizing racism that soured her against it. Outwardly, I had little in common with her. As a young South Asian man growing up in times more conscious of racial injustice, I was far removed from these historical crimes. Although I learned of them during my education, I did not internalize their impact on the patients in front of me in clinic. But through her I came to comprehend just how scarring and enduring these events can be and how they can rob someone of trust. And the truth is the health care system had not treated her well. She had personal stories of doctors who did not believe her pain, nurses who assumed she was uneducated, and being passed over for better options, better care, and better answers. “But I kept showing up,” she said. “Because that’s what we do. We show up even when we’re not wanted.” Her stories to me were revelations. In her younger years, she had helped organize teachers at her school when they tried to fire a fellow Black teacher who seemingly spoke too loud in a meeting. She had lived through redlining, through the crack epidemic, through watching young Black men vanish into prisons, and still she rose every day and worked as a public school teacher for decades. She worked for a system that largely did not work for her. I came to admire that about her—that in simply living day-to-day life with plain dignity and acute awareness of society’s issues, she promoted change by living it. “You want to talk about cancer?” she once said, half laughing. “Try walking into a bank in 1972 with a good credit score and a Black face. That’s a disease this country still hasn’t cured.” Curiously, she did not say these things with bitterness. Not even anger, really. Just clarity. Like someone who had long ago made peace with the truth, even if it was sharp. In clinic, she challenged my every assumption—about treatment tolerance, about compliance, about who is difficult, and who is “advocating.” And she taught me to look differently at the ways bias lingers in medicine. Not just in data or policies, but in subtle moments: the tone we use when explaining options, the hesitations in our tests and referrals, and the assumptions we may not even realize we are making. And she did not just expect good care—she demanded it. She told me early on, “Don’t you treat me like I’m anything other than your mother.” That landed. And in seeing patients before me now, I remind myself to wonder who they were in their past lives, what baggage burdens them, and how it all shapes their perspectives. So from my view, she fought multiple myeloma with everything she had, but from hers, she fought something bigger: an entire system shaped by inequality. And ultimately, she made me better to realize that, not just as a doctor, but as a human being. In my years since knowing her, completing my training, and beginning my practice, I reflect on her grace. I think not just about her life, but what it means to practice medicine in a world that often forgets what patients carry with them into the clinic—generations of weight, of injustice, of strength. Mikkael Sekeres: Welcome back to JCO’s Cancer Stories, The Art of Oncology. This ASCO podcast features intimate narratives and perspectives from authors exploring their experiences in oncology. 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. I am so happy that today we are joined by Adeel Khan, who’s Assistant Professor of Medicine and Public Health at UT Southwestern in Dallas to talk about his Journal of Clinical Oncology article, “A Fight Bigger than Myeloma.” Our guest’s disclosures will be linked in the transcript. Adeel, thank you so much for contributing to JCO and for joining us to discuss your article. Adeel Khan: Thank you so much for having me. It’s a pleasure to be here. Mikkael Sekeres: Adeel, I don’t want to be disingenuous to our readers by acting as if we’ve just met. You and I have known each other for a decade since you were still in your training. I wonder if for our listeners you can tell us a little bit about yourself, where are you from and and walk us through your career so far. Adeel Khan: More than happy to. So, I grew up mostly in Oklahoma, but I’ve sort of lived around in the Northeast and here in the Southwest where I am currently. I did college at the University of Oklahoma. I did medical school at the University of Michigan. I did residency with good fortune at the Cleveland Clinic where I happened to get to know you and have continued to know you since. I did my fellowship then in hematology oncology at Beth Israel Deaconess in the Harvard system and along the way of all that I did a Masters of Public Health at Harvard and a Masters of Science and Epidemiology at Columbia, and that pinball finally settled here to UT Southwestern here in Dallas which I am very happy to make my second home. Mikkael Sekeres: That’s great. I will say just for our listeners you’ve been a superstar since the moment you were a resident. It’s been a real treat for me to get to know you over the years. Adeel Khan: Thank you so much. Mikkael Sekeres: Can you tell us a little bit about your own story as a writer? You’re a good writer. We get submissions from some really good writers every single week. It’s a real privilege to be an editor for the Art of Oncology section and it’s always reinvigorating to me to see how many good writers there are in medicine. How did you start your journey as a writer and how long have you been writing reflective narrative pieces? Adeel Khan: I would say if I went back to let’s say high school, you know, people tend to be divided into kind of like the sciency types versus the literary arts types and you’re kind of an either/or, you know, you didn’t really have as much crossover then. But you know, I actually didn’t mind when we had an essay due and I liked writing back then, and when I entered college I did a minor in English because I actually did enjoy that and I just liked the idea of being able to put your thoughts on paper in a way immortalizing them. Adeel Khan: And then as I sort of pursuing medicine more and more, publishing is really- it has all kinds of flavors to it and scientific publishing is obviously what has been emphasized, but you know, there’s so many things to talk about within medicine. There’s the science and the art of the field, and as I’ve moved along, I’ve written different pieces focusing really on patient stories and interactions. And I think my motivation has always been that as I have gotten particularly nowadays increasingly busy, I’ve had the fortune and misfortune of becoming more and more busy, it’s easy to lose the opportunity to really connect with people that makes what we do meaningful. And so in those times when you know, and they can be rare, but when you really get to connect with someone in front of you who you’re helping to care for, it’s really refreshing and it’s rejuvenating and I’ve tried to keep that with me as long as I can as I’ve gone through my journey. Mikkael Sekeres: There’s a lot of jumping off points from what you just said, Adeel. I wonder if I can start with do you consider yourself an English major who’s good at science or do you consider yourself a scientist who’s a good writer? Adeel Khan: I think I’m too humble to say either. I think I was really a science major who just happened to like writing and reading and kept that as a part of myself. Mikkael Sekeres: Because I think there are a cadre of doctors who are actually English majors and have learned to turn science into storytelling and that’s their entrée into science and medicine. I remember I talked for a while with David Scadden about this. He’s a brilliant translational scientist who’s based at Mass General who also teaches a writing course to the Harvard undergrads and who was an English major when he was an undergrad at Case Western. We’ve talked about this, about how there are people, I’ll include myself in this, who just think different, who probably have these liberal arts brains and they figured out a way to convert science into a way a liberal arts person can understand it. Adeel Khan: Yeah, I mean narrative medicine has been I think around all along and it has only kind of been recently named as a field, but I mean it very much speaks to that that there’s so much more than just G proteins in medicine. Mikkael Sekeres: I’m thrilled to hear that by the way. You mentioned you were an English minor. Are there particular writers who are an influence on you or can you talk about what’s the most recent book or article you’ve read? Adeel Khan: Oh, that is a great question. Paulo Coelho is someone I’ve liked for a long time, The Alchemist. I really liked it because I read it after I had lived in Egypt. I lived in Egypt between college and med school as a study abroad program, and I had actually been to the Faiyum Oasis where the protagonist in that story ends up. And so it was just a fascinating story to me that I could trace some of the steps that are discussed in the book and it’s so much- it’s a story about self discovery which at that phase of life that I was in was you know, very much a theme of my own life. And so that’s one that definitely stands out in my head. Mikkael Sekeres: Do you think reading pieces outside of medicine makes you a better scientist? Adeel Khan: I think absolutely. I think it makes you a better human being. In some ways I lament that so much of what I do reading now is so much just about what’s in the field, what’s new in myeloma, what’s new in hematology oncology and I sort of miss the escape to reading other things and being able to pursue it. And even broader than just what a novel really offers. I mean, I grew up reading comic books too and I’ve always loved superheroes and fiction whether it’s Star Wars and other things. And really they’re just stories and the medium- there might be connotations whether it’s a comic book or a or a novel, but they’re just different mediums, but the fact that they’re just stories is fundamental. I actually think to myself that it’s so fascinating that the earliest piece of writing that we’ve really retained as human beings is we believe, the Epic of Gilgamesh, which is really a story of a superhero when you think about it, you know, and it’s it’s fiction, it’s phantasmic in so many ways. But it speaks to how stories are just vital as people. Mikkael Sekeres: And what is it about graphic novels or my kids now of course call them graphic novels. We’re not allowed to call them comic books. Adeel Khan: As they’ve been renamed, yeah. Mikkael Sekeres: What is it about graphic novels or comic books or the story of a hero that appeals to us in medicine? Adeel Khan: I think it’s in some ways a parable of what we’re doing. There’s something so powerful and fundamental about this idea of good-evil and we can rename it in different ways, but that you’re trying to overcome something that's an issue, an obstacle. And when you think about what we do in- particularly in oncology, that’s very much what we’re trying to do. We’re trying to overcome an illness, a disease, to try to help the person in front of us. And it has different aspects to it. It could be someone pursuing something in a lab, it can be treating someone in front of you in clinic, but that simple dichotomy of there’s something good about what you’re doing because there’s something bad in front of you is just the fundamental that runs through it all. Mikkael Sekeres: It’s fascinating. I wonder if 30, 40, 50 years ago people would have said, “Oh, it’s because the doctor is the hero,” but we don’t view ourselves that way anymore. The patient is the hero. I love how you posit this as a good versus evil, the evil of course being cancer and the good everything that our patients do and that we try to to help to do to overcome that. Adeel Khan: For sure. Mikkael Sekeres: You wrote a really great essay about a woman who was a patient of yours. Can you tell me a little bit about what inspired you this time to make this connection and to write about this woman? Adeel Khan: Within the past year or so as I had been just really- the fortune and misfortune of getting busier, I lamented that I just wasn’t able to spend as much time with patients in the way that I used to. One of the beauties of medical school and you know, to some degree residency and certainly fellowship is that you just have a little bit more time as a trainee, student and trainee where you can really bond with your patients I think a little bit more. And so in trying to kind of refresh my motivation, I was thinking about just kind of randomly some stories that I’ve kept in the back of my mind and this patient’s story is one that stood out to me as I was recalling things. It was so fascinating to me because she had the disease which I now focus on. And the way that she viewed it and the way that she viewed it as a part of her life was just so different than what I think most people think of. And in that way it was very revitalizing that her focus in her life was part of a broader theme of the way that I think she viewed society. And this was just one piece of her own part of that much, much larger puzzle. Mikkael Sekeres: You really write lovingly about her and about how meaningful her context was in how you cared for her and what her experience was in the medical system. I wonder if I can read a little bit of what you wrote because it really did grab me as well. I’m going to start out by quoting you where you say, “Outwardly, I had little in common with her. As a young South Asian man growing up in times more conscious of racial injustice, I was far removed from these historical crimes. Though I learned of them during my education, I did not internalize their impact on the patients in front of me in clinic. But through her, I came to comprehend just how scarring and enduring these events can be and how they can rob someone of trust.” Wow, there’s a lot there. Could you start with what was your perspective as a young South Asian man growing up in Oklahoma and what your view was of racial injustice compared to what her experience was of racial injustice? Adeel Khan: Yeah, I have to admit I don’t know that I thought that much of it back then and I think that that’s part of what it is. You know, being someone who was South Asian, I’m Pakistani, I have Indian roots, and coming into American history and as we learned about it there’s so much about slavery and the theme of slavery unfortunately and and the struggles that enslaved peoples have. And you know, as a relatively recent immigrant, I didn’t see myself in that narrative. I didn’t see myself in that historical reality. But I knew about it intellectually, you know, I knew about the Tuskegee Syphilis Experiments, you know, I learned about all these things and and you learned about how atrocious so much of it is. But again, not being so directly connected, I did not put myself in that same role as someone to view it so close to myself. I will say it hit a little bit more after 9/11 when you know, I was randomly stopped at airport security a little bit more often in those days and again, I... /episode/index/show/aoopodcast/id/38408805

Whispers After the Cure: Reflections on Marriage and Malignancy in India 10/09/2025

Whispers After the Cure: Reflections on Marriage and Malignancy in India Listen to JCO Global Oncology’s Art of Global Oncology article, "” by Dr. Vangipuram Harshil Sai, who is a fourth semester medical student at All India Institute of Medical Sciences. The article is followed by an interview with Harshil Sai and host Dr. Mikkael Sekeres. Sai shares his personal reflection of a visit which transformed into an education in silence, stigma, and the unseen aftermath of survivorship for young women in India. TRANSCRIPT Narrator: , Vangipuram, Harshil Sai A Summer Afternoon and A Story That Stayed The summer break of my fourth semester of medical school offered a fleeting reprieve from the relentless immersion in textbooks and caffeine-fueled study sessions. I had envisioned a few weeks of rest—a pause from the algorithms of diagnosis and the grind of multiple-choice questions that had become my daily rhythm. But one humid afternoon altered that plan. I accompanied my mother—a senior medical oncologist—to her clinic in a Tier 2 city in Southern India. Over the years, I had seen her not just as a clinician but as a quiet force of empathy. She was one of those remarkable physicians who listened not just to symptoms but also to stories. Her practice was rooted in presence, and her calm resilience often made my academic anxieties seem trivial. I settled into a corner chair in the waiting area, where the air was tinged with antiseptic and that uncomfortable waiting room stillness—an alert hush between uncertainty and news. Patients waited in quiet constellations: a man turning the same page of a newspaper, a teenage girl watching her intravenous drip as if it held answers, and a couple clasping hands without meeting eyes. It was in this atmosphere of suspended quiet that Aarthi entered. She was a young woman whose presence was composed yet tentative. Her story would become a quiet inflection point in my understanding of medicine. She was 24 years old, embodying the aspirations tied to a recent engagement. A postgraduate in English literature and a practicing psychologist; she carried herself with a rare blend of intellect, poise, and cultural grace that, in the eyes of many families, made her a deeply desirable bride. Her sari was immaculately draped, her posture measured and calm, yet in the way her fingers intertwined and her eyes briefly lowered, there was a trace of vulnerability—a shadow of the turmoil she carried within. She came alone that day, stepping into the waiting room with a composed demeanor that only hinted at the weight she bore in silence. What began as a day to observe became the beginning of something far more enduring: a glimpse into how healing extends beyond treatment—and how survival, though silent, often speaks the loudest. The Diagnosis That Changed the Wedding The consultation was precipitated by a clinical presentation of persistent neck fullness, low-grade fevers, and drenching night sweats, which had prompted a fine-needle aspiration before her visit. The atmosphere in the room held an implicit gravity, suggesting a moment of significant change. My mother, with her characteristic composure, initiated a diagnostic process with a positron emission tomography-computed tomography and biopsy. As usual, her steady presence provided reassurance amid the uncertainty. A week later, the diagnosis of classic Hodgkin lymphoma, stage IIB, was confirmed. Rapid initiation of ABVD chemotherapy would provide an almost certain pathway to remission and an excellent prognosis. Yet, this clinical assurance did not extend to personal tranquility. Aarthi made a deliberate choice to share the diagnosis with her fiancé—a considerate and empathetic individual from a well-regarded family. Their wedding preparations were already underway with gold reserves secured and a vibrant WhatsApp group of 83 members chronicling the countdown to their big day. Shortly thereafter, a prolonged silence settled, eventually broken by a call from a family member—not the fiancé—indicating that the family had decided to terminate the engagement because of apprehensions about future stability. The union dissolved without public discord, leaving Aarthi to navigate the subsequent journey independently. As expected, 6 months of chemotherapy culminated in a clean scan. Her physical health was restored, but an emotional chasm remained, unrecorded by clinical metrics. Yet beneath that silence was a quiet resilience—a strength that carried her through each cycle of treatment with a resolve as steady as any celebrated elsewhere. The regrowth of her hair prompted a conscious decision to trim it shorter, seemingly an assertion of autonomy. Her discourse on the illness shifted to the third person, suggesting a psychological distancing. Her reactions to inquiries about the terminated engagement were guarded. She would yield only a restrained smile, which intimated a multifaceted emotional response. Her remission was certain, yet the world she stepped back into was layered with quiet hurdles—social, cultural, and unseen—barriers far more intricate than the disease itself. Survivorship Without A Map In the weeks that followed Aarthi's diagnosis, I began to notice a quiet but consistent pattern in the oncology clinic—one that extended beyond medical recovery into the unspoken social aftermath. Among young, unmarried women in India, survivorship often came with a parallel challenge of navigating shifts in how they were perceived, particularly as marriage prospects. In Indian families where marital status is closely tied to stability and future security, a woman with a cancer history, even after complete remission, somehow came to be quietly perceived as less suitable. Proposals that had once moved forward with confidence were paused or reconsidered after disclosure. In some cases, financial discussions came with requests for additional support framed as reassurance rather than rejection. These changes were seldom explicit. Yet, across time, they pointed to a deeper uncertainty—about how survivorship fits into the expectations of traditional life scripts. For women like Aarthi, the narrative shifted toward caution. There were subtle inquiries about reproductive potential or disease recurrence and private deliberations over disclosure during matrimonial discussions, even within educated circles. Meanwhile, my observation of the disparity in how survivorship was interpreted across genders in our country left a profound mark on me. A 31-year-old male investment banker who had recovered from testicular cancer was hailed in local media as a testament to fortitude. Male patients seemed to gain social capital from their cancer journeys. This suggested a cultural framework where female value was quietly reassessed, influencing their post-treatment identity through unstated societal perceptions. Digital Ghosting and the New Untouchability Within the digital landscape of curated profiles and algorithmic matchmaking, the reassessment of female survivorship acquired a new dimension. In one instance, a sustained exchange of text messages ended abruptly following the mention of cancer remission. The final message remained unanswered. This form of silent disengagement—subtle, unspoken, and devoid of confrontation—highlighted how virtual spaces can compound post-treatment vulnerability. Designed to foster connection, these platforms sometimes amplified social distance, introducing a modern form of invisibility. Similar to employment status or religion, a cancer history has become another addition to a checklist used to evaluate compatibility. When Medicine Ends, but Society Does Not Begin As a medical student, I felt a growing discomfort. Our curriculum equips us to manage treatment protocols and survival metrics but rarely prepares us for the intangible burdens that persist after cure. What captures the weight of a canceled engagement? What framework supports the quiet reconstruction of identity after remission? Aarthi's path, echoed by many others, revealed a dissonance that medicine alone could not resolve. The challenge was not solely the illness but the reality that she was now unqualified to return to her normal life. Medicine delivers clean scans and structured follow-up, but social reintegration is less defined. In that space between biological recovery and social acceptance, cancer survivors often stand at the edge of wholeness—clinically well but navigating a quieter uncertainty. A Different Ending Two years later, Aarthi's journey took a quiet turn. At a spiritual retreat in Bengaluru, she met an ear, nose, and throat resident who had lost his father to lung cancer. Their connection, shaped by shared experiences, evolved into a partnership grounded in empathy and mutual respect. They married the following year. Their invitation carried a brief but powerful line: “Cancer Survivor. Love Thriver. Come celebrate both.” Today, they comanage a private hospital in Hyderabad. Aarthi leads psycho-oncology services, whereas her partner performs surgeries. He often notes that her presence brings a calm to the clinic that no medication can replicate. Aarthi's journey continues to guide me as I progress through my medical training, reminding me that cure and closure often follow separate paths. Healing, I have come to understand, extends beyond the clinic. It often unfolds in quieter spaces where scans no longer guide us. The real curriculum in oncology lies not only in staging and response rates but in recognizing the many transitions—social, emotional, and cultural—that survivors must navigate long after treatment has concluded. Social stigma is often a second metastasis—undetectable by imaging but present in tone, hesitation, and traditions that quietly redefine survivorship. For many women of marriageable age, treatment marks not the end of struggle but the start of another kind of uncertainty. These survivors carry wounds that do not bleed. Yet, they persist, navigate, and redefine strength on their own terms. Aarthi's quiet resilience became a point of reckoning for me, not as a medical case, but as a guide. Her story is not one of illness alone, but of dignity quietly reclaimed. “Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.”—Khalil Gibran. Mikkael Sekeres: Welcome back to JCO's Cancer Stories: The Art of Oncology. This ASCO podcast features intimate narratives and perspectives from authors exploring their experiences in oncology. 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. In oncology, we often focus on treatment and a way to find a cure. But what about the expectations and challenges a patient may face from their diagnosis, and even discrimination, especially in different cultures? Today, we're going to examine that space with Harshil Vangipuram, a medical student from India whose JCO Global Oncology article, "Whispers After the Cure: Reflections on Marriage and Malignancy in India," touches on this complexity after treatment. Harshil, thank you for contributing to JCO Global Oncology and for joining us to discuss your article. Harshil Vangipuram: Thank you for having me, Dr. Sekeres. I was raised by a family of oncologists, my mother being a senior medical oncologist and father a senior radiation oncologist. I had exposure to contrasting worlds, which were resource constrained and a cutting edge technology world. And I have unfulfilled curiosity, and I'm still learning, forming ideals. I also see patients as my teachers, so I think that might be helpful. Mikkael Sekeres: Thank you so much for a little bit of that background. So, tell us a little bit about your journey through life so far. Where were you born and where did you do your education? Harshil Vangipuram: I was born in a state called Gujarat in the western part of India. My father got transferred to the southern part of India, so I did my education there. That's it, yeah. Mikkael Sekeres: Okay. That's enough. You're not that old. You haven't had the sort of training and final job that a lot of us have gone through. So, what about your story as a writer? How did you first get interested in writing, and how long have you been writing reflective or narrative pieces? Harshil Vangipuram: I read some books from Indian authors and from foreign, too. And they actually inspired me how patient care was being seen around globally. I always used to carry a hand note. I used to write what I used to see in the clinical postings here at AIIMS. And actually, journaling started as a stress relief for me, and slowly, after hearing patients' stories, it almost became an obligation to write about them. Mikkael Sekeres: Obligation, you use that word, which is such an interesting one. How did writing become an obligation? What did you feel obliged to do when writing about some of the patients you were seeing for the first time? Harshil Vangipuram: Many of them were having struggles which were not seen by everybody. And I got astonished by their confidence and resilience in those situations. So, I thought that I should write about them so that everybody knows about it. And these social stigmas were never talked by anyone around them. So, I felt that if I could voice them, others might eventually know about them. So, that's pretty much the reason I wrote. Mikkael Sekeres: It's so interesting. The people we meet every single day, particularly in hematology oncology, bring such fascinating backgrounds to us, and they're backgrounds that may be unfamiliar to us. And I think that as doctors and writers, we do often feel obliged to tell their stories from the mountaintops, to let other people in on some of the aspects of life and medical care that they're going through and just how inspiring some of these patients can be. Harshil Vangipuram: Yeah, yeah, very true. Very true. Mikkael Sekeres: You mentioned that your mom is a medical oncologist. What kind of influence did she have on your decision to enter medicine and perhaps your own specialty one day? Harshil Vangipuram: Observing my mother practice influenced a lot, and she taught me that medicine is not only about treating a patient, but also listening to their problems. It may be more present in the room. The textbooks I read didn't capture live experiences. I always thought that stories will stay with people longer than actual survival curves. Writing filled that gap between what I studied and what I felt in the OPD. Mikkael Sekeres: It's a great phrase you just whipped out. Patients' stories will stay with us longer than survival curves. Can you tell us a little bit about where her clinic is located? You said in southern India. Can you describe the types of patients she sees? Harshil Vangipuram: It's a small town called Nellore in Andhra Pradesh state. The patients are, most of the time, from a rural population where decisions are mostly family-driven and there's a tight community surveillance and the stigmas are more overt, too. A few of them can be from urban population also, but they have subtler discriminations towards stigmas. Mikkael Sekeres: Can you explain a little further what you mean by decisions are often family-driven? Harshil Vangipuram: If we take marriage, it is often seen as an alliance between two families that are trying to increase their social value, their economic status, and respect in the society. In arranged marriages, for suppose, it's basically driven between these concepts. Mikkael Sekeres: I don't know if it's too personal to ask, but are your parents in an arranged marriage? Harshil Vangipuram: No, not at all. Mikkael Sekeres: So not all the marriages in the clinic are arranged marriages. Harshil Vangipuram: Yeah. Mikkael Sekeres: You know, when you said that decisions are family-driven, you mentioned that people are in arranged marriages. And I wanted to talk a little bit about the stigma you highlight in your essay. I'll talk about that in a second. I thought you were going to go down a route about medical decisions being family-driven, meaning people have to support their families, and getting medical care is costly and takes time away from work, and that sometimes influences decisions about treating cancer. What examples have you seen of that in shadowing your mom? Harshil Vangipuram: I have seen patients who have Hodgkin's lymphoma, breast cancer, and ovarian cancer, who were in the age of 25 to 35, who were getting married. Many of them actually got their engagements broken. And many of them got rejected at matrimonial apps. Many of them also had been told to increase the dowry that is given actually in the form of financial security. Mikkael Sekeres: In your essay, you describe a woman who is engaged and who has a new diagnosis of Hodgkin lymphoma. Can you talk a little bit about the process of getting engaged and marrying in southern India? Harshil Vangipuram: We have the arranged marriage, love marriage, and hybrid, which is kind of arranged and kind of in love. Mostly, these problems really occur in arranged marriages. In love marriages, we don't see that that often because both are understanding about themselves and their families. And both families actually accept them both. Mikkael Sekeres: What's the process of going through an arranged marriage? What happens? Harshil Vangipuram: It can be through parents, relatives, or any known ones or through peers. We just find a man or woman who has a similar caste, who has a good financial income, and people who are respected by the society. And obviously, both the families should have aligned interests for them to accept the marriage. Mikkael Sekeres: About how often are marriages arranged and how often are they love marriages in southern India where you live? Harshil Vangipuram: Almost 90% of the marriages are arranged here. Mikkael Sekeres: Wow. So, your parents were unusual then for having a love marriage. Harshil Vangipuram: Yeah. Mikkael Sekeres: In your essay, you write, and I'm going to quote you now, "Among young, unmarried women in India, survivorship often came with a parallel challenge of navigating shifts in how they were perceived, particularly as marriage prospects. In Indian families where marital status is closely tied to stability and future security, a woman with a cancer history, even after complete remission, somehow came to be quietly perceived as less suitable." Wow, that's a really moving statement. I'm curious, what stories have you seen where, in your words, women became less suitable as a marriage prospect? Harshil Vangipuram: For women, the most important thing in a marriage is, what do you call, a family honor, fertility, and economic status in the community. So, after a long dose of chemo, many people think that people become infertile. In India, basically, we have many misconceptions and stigmas. So, people obviously think that people who have got cancer can spread it to their children or are infertile and are often excluded out of the society as a marriage prospect. Mikkael Sekeres: Gosh, that must be devastating. Harshil Vangipuram: Yeah. Mikkael Sekeres: Does the same occur for men? So, is it also true that if a man has cancer, that he is perceived as less fertile, or it may be perceived that he can pass the cancer on to children? Harshil Vangipuram: Here, after a man beats cancer, they start to celebrate it, like they have achieved something, and it's not like that for a woman. Mikkael Sekeres: In your essay, you do write about a happy ending for one woman. Can you tell us about that? Harshil Vangipuram: Yeah, a cancer survivor obviously met her true love of life in Bengaluru, who was an ENT resident then. And his father died from lung cancer. So obviously, he knew what it felt to beat cancer. ... /episode/index/show/aoopodcast/id/38501295

Brown Paper Bags: Beware of Patients Bearing Gifts 09/12/2025

Brown Paper Bags: Beware of Patients Bearing Gifts Listen to ASCO’s Journal of Clinical Oncology Art of Oncology article, "” by Dr. Stephanie Graff, who is an Associate Professor of Medicine at Brown University and Director of Breast Oncology at Brown University Health in Providence Rhode Island. The article is followed by an interview with Graff and host Dr. Mikkael Sekeres. Dr Graff shares how she handled receiving a gift from a patient. TRANSCRIPT Narrator: , by Stephanie Graff, MD, FACP, FASCO Minor demographic features of the patients described have been altered to honor their privacy “Why are you being weird about opening the bag?” he asks. The gift that William brought me is still sitting on the edge of the clinic examination room counter, the proverbial elephant in the room. He presented it to me the moment I entered the examination room, excited as a child giving their first Christmas gift. I have demurred, stating I will open it later. I have tried to avoid opening the bag, explaining that I do not like opening gifts in front of people. William is as tenacious about me opening this gift right now as he is about facing his disease. I treat William for male breast cancer. I have always called him William because it is what the electronic medical record says as his preferred name. It is his first name, and when I verified on our first meeting what he preferred to be called, he said “William is fine,” but just like the Sheryl Crow song says, “I’m sure it’s Bill or Billy or Mack or Buddy.” 1 William is electric. He lights up the examination room, engages my staff while playfully ribbing them, and has a laugh that reverberates down the hallway. He comes to each visit with a colorful story about the events that have transpired since our last appointment, vividly painting images of his children and grandchildren and his life outside the clinic walls. He swells with pride discussing his grown children like a new mother showing off photos of her baby. “Ryan just finished the most beautiful presentation deck for work. You should see it. Those slides! I bet he would show it to you.” Ryan works in banking or finance or insurance—I cannot remember—but I confess I never took William up on the offer to see the slide deck. Abruptly, William stands up, moving faster than an elderly patient with metastatic cancer should be able to move. In a single swift movement, he grabs the brown paper bag from where I abandoned it on the counter and drops it in my lap. “Open it!” I sigh deeply, carefully unroll the top, and peek in. “I got those for the mister!” he exclaims. Inside is a bag of Werther’s hard caramels. As relief floods me, I laugh a deep, slow laugh of appreciation for this 70-something man and his ability to brighten the world around him in the most surprising ways. During our last clinic visit, he told me hard caramels take the chemotaste out of his mouth, and I had confessed that my husband is also Werther’s devotee, but prefers the soft chews. William made a case then and there for the hard caramels and told me I should try to get “Mr Dr Graff” to make the change. He approached the soft caramel versus hard caramel discussion with the intensity of a high school debate champion. Needless to say, the Graff household now alternates our caramels—enjoying both hard caramels and soft chews. “Seriously. What gives with you and the bag?” he probes again. I recognize that William is not going to let this go. He is too astute and persistent. So, I decided to tell him the whole truth about gifts from patients and brown paper bagsThat first year as an oncology fellow, after months on inpatient consults, I finally started outpatient clinics just as the holidays season began. The patients, many of whom had deep and long relationships with the attending oncologists—the same relationships I was eager to build, the relationships that drove me to oncology as a profession—brought in gift after gift, homemade cookies, handmade quilts, and jars of homemade jam. It was rarely something elaborate as the patients knew the faculty could not accept anything too over the top, but it often showed the same tender thoughtfulness that you show a dear friend or favorite relative. Their favorite coffee. A T-shirt of a favorite band. Or something jovial, like a rival sports team or college’s coffee mug. It was during this time of the busy holidays, maybe the second week of December, in my own fellow’s clinic, that one of my patients with solid tumor arrived with a small brown paper bag. He of course had synchronous primary malignancies that in no way aligned for a simple plan of care and was experiencing dreadful side effects, which seemed to be the way of fellow’s clinic. I had been seeing him quite often, pouring every ounce of my nascent skills into trying to help him through his treatment. He handed me the bag, and in my enthusiasm and naivety and holiday spirit, I bubbled with excitement thinking “oh, he brought me a little gift!” But my own thoughts were pouring over him saying “I brought this in for you because…” and as he was saying the rest, I tore open the bag, all the while with my eyes on him as he spoke, and plunged my hand into the bag, grabbing the…what exactly…cloth something…to hear him saying…. “…because I wanted you to see how bad this diarrhea is! Pure liquid. Bloody. Constant. I can’t even make it to the bathroom,” he was saying. Yes. I was holding—in my bare hand—his soiled, blood-stained underwear. Merry Christmas. I have not excitedly torn open a mystery gift or plunged my hand into a bag since. This is not a lesson that took more than one time to learn. In retrospect, perhaps my patient did give me a tremendous gift that day. I was given a true under-standing of his side effects, of what it means to have grade 3 diarrhea, hemorrhoidal bleeding, and fecal incontinence. If there was any chance I did not believe patients before that day, I have always believed patients since—no need to bring me evidence in a little brown bag. Thanks. I’m good. By this point in my retelling of the story, William was nearly doubled-over in laughter, red-faced, and barely able to breathe or stay in his chair. Thus, our little ritual began. William continued to bring me gifts in brown paper bags at every visit for the rest of his time as my patient. Always small tokens. A pocket pack of Kleenex during cold season. A can ofsoup “to warm my hands,” which are perpetually cold during physical examinations. A small handmade Christmas ornament. Sometimes, he would put a bag inside a bag, inside a bag…laughing like an evil super villain, while I nervously unpacked his brown paper bags of torture. William elected to go to hospice care appropriately, living a few months with a good quality of life with home hospice. A few weeks after his passing, his son arrived at the registration desk and asked to speak with me. When I went to the front of the clinic to invite him back, to hug him, and tell him how much his father mattered to all of us at the cancer center, he handed me a brown paper bag. “He insisted” was all William’s son said. I opened it, genuinely concerned what I might find this time, nervously peeking into the bag. It was a copy of William’s obituary, thanking the cancer center for all the care we had shown him and for inviting him to be part of our lives as much as we were a part of his. This is the greatest gift—the gift of impact. Of knowing my care mattered, of knowing we were truly on the same care team. I carry my patients and their families with me through life, recalling their anecdotes, wisdoms, and warnings at just the right moments. I save their precious words in a box of cards I keep at my desk. I also have a collection of hilarious, insightful, peculiar, and profound assortment of little gifts that made a patient think of me—a curio of curiosities, a microcosm of my career. I think this is why patients give these small tokens in the first place—to make tangible the gratitude, the emotion, and the bond that is ex-changed between the patient and the oncologist. In giving, we are connected. Gifts speak for us when the weight of emotion and the vulnerability of truth are too much. A gift says “you matter in my life” as much as a gift says “I want you to feel how life altering the diarrhea I have been experiencing at home has been.” I have received both those gifts. They have changed me. So, I do not know—I am thinking maybe it is time I go back to plunging my hand straight in? Because in the end, somewhere down there at the bottom, that is where all the good stuff is hidden. Mikkael Sekeres: Welcome back to JCO's Cancer Stories: The Art of Oncology. This ASCO podcast features intimate narratives and perspectives from authors exploring their experiences in oncology. I am your host, Mikkael Sekeres. I am Professor of Medicine and Chief of the Division of Hematology at the Sylvester Comprehensive Cancer Center, University of Miami. Today, I am so excited to be joined by Dr. Stephanie Graff, Associate Professor of Medicine at Brown University and Director of the Breast Oncology Program at Brown University Health in Providence, Rhode Island, to discuss her Journal of Clinical Oncology article, "Brown Paper Bags." Our guests' disclosures will be linked in the transcript. Stephanie, I am so excited to have you here. Welcome to our podcast, and thank you for joining us. Dr. Stephanie Graff: It is such an honor to be here and to discuss this with you. Mikkael Sekeres: Stephanie, I have to say, I feel like I know you so well because I have read your writing over years, and there is an intimacy to how you write and an honesty to it where I really feel as if we are sitting together over a table drinking an International House of Coffee mocha blend, talking about our recent trip to Paris. But I am not sure all of our listeners know you quite as well, so I am wondering if you can tell us a little bit about yourself. Dr. Stephanie Graff: Sure. So I am on the JCO Art of Oncology editorial board, and live in Providence. So you and I have many shared interests. I love to write and I love to read, and I think that how you described my writing reflects my communication. I think that I tend to be really honest and open with patients about, about everything, about both myself and their disease. And I think that that is really what you are capturing in my story writing. I am an avid reader. I read just nonstop and write a variety of different styles of writing. I have written several breast cancer related texts, obviously academic papers. I have confessed to you in the past that I write poetry, but it is for myself. It is very unlikely to end up in the pages of JCO. I like writing stories like this when I feel like a story has been percolating in my mind for a while. Mikkael Sekeres: Boy, there is a lot of jumping off points I want to take from what you just said, of course. Maybe we can start with your writing process. What triggers a story and how do you face the dreaded blank page? Dr. Stephanie Graff: I think it is different for different stories. Often, it is something that has been the struggle or the relived experience that I keep turning over. And I find that like when I am walking my dog in the morning or when I am running on the treadmill, that sometimes the same moments keep coming back up in my mind: a difficult patient encounter, a heartwarming patient encounter, a challenging conflict with a peer or colleague. Those are the things that I keep going back to. And I think that as I go back to it over time, I craft that narrative. And crafting the narrative is also what helps me work through the story and cement it as a lesson that I learned from or that becomes a memory that is important to me, and ultimately makes it easy to just sit down and write, which is often, I do just sit down and write the whole story and it comes out pretty much in the form I end up submitting. But I think that that is because I have spent so much pre-contemplative thought before I get to pen to paper. Sometimes it is, with this story, and I think I had said this in my original cover letter with "Brown Paper Bags," one of my nurses, my nurse practitioner, actually had gotten a gift from a patient that was actually wildly inappropriate for her, both as a gift from a patient and for her as an individual. And she had like brought it back to our shared workspace and was like, "Guys, like, what do I do with this?" And it prompted all of us to share our stories of like really fantastic things that patients have given us, really weird things that patients have given us, and just to end up laughing hysterically about the funny moments and getting a little teary-eyed thinking about the way that we hold on to some of those memories. Mikkael Sekeres: I love that whole description. First of all, starting with your writing process. I think we all come out of a room sometimes where we have been meeting with a person, and our stomach just turns. There is something that did not sit right with us about the interaction or there is something that was really special about the interaction. And I think if we are thoughtful people and thoughtful doctors, we ruminate over that for a while and think to ourselves, “What was it that was really special about that, that really worked that I can actually apply to other patients?” Or, “What was it that did not work, that something that went south where I probably need to change my behavior or change how I am entering an interaction so that does not happen again?” Dr. Stephanie Graff: Yeah, I think about it like those, you know, I am sure you have the same experience I do that a lot of your early childhood memories are actually photos of your early childhood that you can remember more clearly because you have the picture of them, and certainly the same is true for my own children. But I think that having that description, that powerful visual description of a photograph from a moment, helps you cement that memory and treasure it. And I think that the same is true with writing, that when we have an experience that if we are able to make it tangible, write about it, turn it into a song, turn it into a poem, turn it into a piece of art, whether that is, you know, an interpretive dance or a painting, whatever your expression is, that is going to be something that becomes a more concrete memory for you. And so regardless of whether it is a good memory or a bad memory, I think sometimes that that is how we learn and grow. Mikkael Sekeres: I think that is spot on. I believe there are some theories of memory also that talk about accessing the memory over and over again so that you do not lose it and you do not lose the connections to it. And those connections can be other memories or they can be anything that occurred with our five senses when the event actually occurred. Dr. Stephanie Graff: Yeah. That- so one of my favorite books is Audrey Niffenegger's book called The Time Traveler's Wife. Have you read that? It is- the gentleman has a, you know, genetic condition in the fictional book that makes him travel in time and he like leaves his body, his clothes are on the floor and travels back and he is drawn to moments that are important to him. So he is drawn back constantly to the moment he met his wife, he is drawn back constantly to the moment his parents died. And I think that that is true, right? Our memory takes us back to those really visceral, important moments over and over again. Mikkael Sekeres: So you mentioned before, one of the jumping off points I wanted to explore a little bit more was when someone gets an unusual gift and brings it back to the workroom and there is that moment when everyone looks at it and the person says exactly what you said, "What do I do with this?" Right? And it is interesting that it is even a question because sometimes there is a really weird gift and there are certain people who would just immediately put it in the trash, but as oncologists, we do not, do we? Dr. Stephanie Graff: No. Mikkael Sekeres: That is not an option, but we want to know what it is we can do with it. So I do not know if you can remember any particularly unusual gifts you received or your colleagues received during that conversation and then what do you do with them? Dr. Stephanie Graff: Yeah, I think that sometimes they are, I mean, honestly, like the truth is is that I have them, right? Like they are all over my life, these little trinkets and doodads, even to the point that sometimes I give gifts that are inspired by my patients, too. Like two Christmases ago, I gave all of my colleagues as their Christmas gift these blown glass octopuses because one of my patients was obsessed with octopi and it like had led to several conversations, and they have obviously eight arms, we all know that, but they have numerous hearts, they have this very complex, empathetic brain, they are thinking and feeling, very cool, cool animals if you really start to learn and read about them. And I really started to think both about how much we had all kind of rallied around this one patient and her unique love of octopi, but also like how much that animal represents what it means to practice team based care, to have this larger than life heart, to feel like you are more than one brain, like you have eight arms because you work with these really great people. So I wrote that much more eloquently than I am doing right now in a card for my team and gave them these glass octopuses for Christmas. And so, you know, I think that our patients, it is not always even a physical gift. Sometimes it is just sharing their stories that ends up staying with us. Mikkael Sekeres: And that must not have been that long after the documentary was released about the man who had this special relationship with an octopus as well. So do you save the gifts given to you by patients? Why or why not? Dr. Stephanie Graff: So, obviously we get a lot of things like food and we just eat that, right? I am sure your clinic is a collection of boxes of chocolates and, so in Rhode Island, there is a lot of Portuguese patients and so we get a lot of like Portuguese bread and things like that too, which is delicious. So we have all sorts of food all the time and that just gets eaten. I do save patients’- and I realize we are not on camera for our viewing audience, but I have bizarrely, so one patient gave me this red devil, which is amazing because Adriamycin, which is obviously a really common breast cancer drug, is called the "red devil." And this is kind of a famous folk art carving by Alexander Girard. I think the actual real one is in Philadelphia at their art museum, but she was like, "You gave me the red devil, so I am going to give you the red devil." And like, I think that is hilarious. Like, I will save that forever. But I have so many other patients that have given me like little angels because I like meant a lot to them or helped them through this difficult moment. And I have all of those things, right? And so I have this kind of funny little shelf of angels and devils in my office, which is, I think, amusing. And then, obviously I wrote about the brown paper bags. You know, that patient filled it with little things like butterscotches and a can of soup and an instant hot cocoa mix. It was stuff that like you can realistically use. It kind of comes and goes. It is not necessarily something that you have forever. I had all three of my children during my time, one in fellowship and two as a practicing oncologist, and I was practicing in the Midwest then. I have a wealth of absolutely gorgeous quilts, baby quilts, that were made by my patients for my kids. And I have saved every single one of those. I can tell you which patient made it for which child because... /episode/index/show/aoopodcast/id/38181765

No Versus Know: Patient Empowerment Through Shared Decision Making 09/02/2025

No Versus Know: Patient Empowerment Through Shared Decision Making Listen to ASCO’s JCO Oncology Practice Art of Oncology article, "” by Dr. Beatrice Preti, who is an Assistant Professor at Emory University. The article is followed by an interview with Preti and host Dr. Mikkael Sekeres. Dr Preti explores the challenges which may prevent oncologists from fully engaging with patients during shared decision making. TRANSCRIPT Narrator: , by Beatrice T.B. Preti, MD, MMed, FRCPC During a recent clinic, I saw three patients back-to-back, all from minority backgrounds, all referred for second opinions, all referenced in the notes for being different forms of difficult. Refused chemo, refused hospice, read one note. Refused surgery and chemo, read another, unsure about radiation. Yet, despite the documented refusals (I prefer the term, decline), they had come to my clinic for a reason. They were still seeking something. As an oncologist trained in a program with a strong emphasis on shared decision making between physician and patient, I approach such situations with curiosity. I consider optimal shared decision making a balance between the extremes of (1) providing a patient complete choice from a menu of treatment options, without physician input, and (2) indicating to a patient the best course of treatment, in the eyes of the physician. This is a balance between beneficence (which can often turn paternalistic) and patient autonomy and requires a carefully crafted art. Many of my consults start with an open question (Tell me about yourself…?), and we will examine goals, wishes, and values before ever touching on treatment options. This allows me to take the knowledge I have, and fit it within the scaffold of the patient in front of me. A patient emphasizing quantity of life at all costs and a patient emphasizing weekly fishing trips in their boat will receive the same treatment option lists, but with different emphases and discussions around each. Yet, many physicians find themselves tending toward paternalistic beneficence—logical, if we consider physicians to be compassionate individuals who want the best for their patients. All three patients I saw had been offered options that were medically appropriate, but declined them as they felt the options were not right for them. And all three patients I saw ended up selecting a presented option during our time together—not an option that would be considered the best or standard of care, or the most aggressive treatment, but an option that aligned most with their own goals, wishes, and values. This is of particular importance when caring for patients who harbor different cultural or religious views from our own; western medicine adopts many of its ideas and professional norms from certain mindsets and cultures which may not be the lenses through which our patients see the world. Even when a patient shares our personal cultural or religious background, they may still choose a path which differs from what we or our family might choose. It is vital to incorporate reflexivity in our practice, to be mindful of our own blinders, and to be open to different ways of seeing, thinking, and deciding. I will admit that, like many, I do struggle at times when a patient does not select the medically best treatment for themselves. But why? Do we fear legal repercussions or complaints down the road from not giving a patient the standard of care (often the strongest treatment available)? Do we struggle with moral distress when a patient makes a choice that we disagree with, based on values that we ourselves do not hold? Do we lack time in clinics to walk patients through different options, picking the method of counseling that allows the most efficiency in packed clinical systems? Is it too painful a reminder of our mortality to consider that, especially in the setting of terminally ill patients, aiming for anything other than a shot at the longest length of life might be a patient's preference? Or are we so burnt out from working in systems that deny us sufficient choice and autonomy (with regards to our own work, our own morals, and our own lives) that, under such repeated traumas, we lose touch with the idea of even having a choice? I have a number of patients in my clinic who transferred care after feeling caught between one (aggressive) treatment option and best supportive care alone. They come looking for options—an oral agent that allows them to travel, a targeted therapy that avoids immunosuppression, or a treatment that will be safe around dogs and small children. They are looking for someone to listen, to hold their hand, to fill in the gaps, as was told to me recently, and not skirt around the difficult conversations that both of us wish we did not have to have. Granted, some of the conversations are challenging—requests for ivermectin prescriptions, for example, or full resuscitation efforts patients with no foreseeable chance of recovery (from a medical standpoint) to allow for a possible divine miracle. However, in these cases, there are still goals, wishes and values—although ones that are not aligned with evidence-based medical practice that can be explored, even if they are challenging to navigate. As my clinic day went on, I spoke with my patients and their loved ones. One asked the difference between hospice and a funeral home, which explained their reluctance to pursue the former. Another asked for clarification of how one treatment can treat cancer in two different sites. And yet still another absorbed the information they requested and asked to come back another day to speak some more. All questions I have heard before and will continue to hear again. And again. There is no cure for many of the patients who enter my GI medical oncology clinic. But for fear, for confusion, perhaps there is. Cancer wreaks havoc on human lives. Plans go awry, dreams are shattered, and hopes are crushed. But we can afford some control—we can empower our patients back—by giving them choices. Sometimes, that choice is pitiful. Sometimes, it is an explanation why the most aggressive treatment option cannot be prescribed in good faith (performance status, bloodwork parametres), but it is a choice between a gentle treatment and no treatments. Sometimes it is a choice between home hospice and a hospice facility. I teach many of the learners who come through my clinic about the physician's toolbox, and the importance of cultivating the tools of one's specific specialty and area of work. For some (like surgeons), the tools are more tangible—physical skills, or even specific tools, like a particular scalpel or retractor. For others, like radiologists, it might be an ability—to recognize patterns, for example, or detect changes over time. For those of us in medical oncology, our toolbox can feel limiting at times. Although we have a handful of treatments tied to a specific disease site and histology, these often fall short of what we wish we could offer, especially when studies cite average survivals in months over years. But one of our most valuable tools—more valuable, I would argue, than any drug—is the communication we have with our patients, the way we can let them know that someone is there for them, that someone is here to listen, and that someone cares. Furthermore, the information we share—and the way we share it—has the potential to help shape the path that our patient's life will take moving forward—by empowering them with information to allow them to make the decisions best for them. Although having such conversations can be difficult and draining for the oncologist, they are a necessary and vital part of the job. My clinic team knows that we can have up to six, seven such conversations in the course of a half-day, and my clinic desk space is equipped for my between-patient routine of sips of tea and lo-fi beats, a precious few moments left undisturbed as much as possible to allow a bit of recharging. By finding a safe space where I can relax for a few moments, I can take care of myself, enabling me to give each of my patients the time and attention they need. When patients thank me after a long, difficult conversation, they are not thanking me for sharing devastating, life-altering news of metastatic cancer, prognoses in the order of months, or disease resistant to treatment. They are thanking me for listening, for caring, for seeing them as a person and affording the dignity of choice—autonomy. I have had patients make surprising decisions—opting for no treatment for locally-advanced cancers, or opting for gentle treatment when, medically, they could tolerate stronger. But by understanding their values, and listening to them as people, I can understand their choices, validate them, and help them along their journey in whatever way possible. Providing a choice affords a suffering human the right to define their path as long as they are able to. And we can give patients in such situations support and validation by being a guide during dark days and challenging times, remembering that medically best treatment is not always the best. When a patient says no to offered options, it does not (necessarily!) mean they are rejecting the expertise of the physician and care team. Rather, could it be a request to know more and work together with the team to find a strategy and solution which will be meaningful for them? Mikkael Sekeres: Welcome back to JCO's Cancer Stories: The Art of Oncology. This ASCO podcast features intimate narratives and perspectives from authors exploring their experiences in oncology. 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 Beatrice Preti, Assistant Professor at Emory University, Adjunct Professor at Western University, and PhD candidate with Maastricht University, to discuss her JCO Oncology Practice article, "No Versus Know: Patient Empowerment Through Shared Decision-Making." At the time of this recording, our guest has no disclosures. Beatrice, thank you so much for contributing to JCO Oncology Practice and for joining us to discuss your article. Beatrice Preti: Well, thank you so much for having me today. Mikkael Sekeres: It's an absolute treat. I was wondering if we could start with sort of a broad question. Can you tell us about yourself? What was your journey like that landed you where you are right now? Beatrice Preti: Oh goodness, that's a very loaded question. Well, I am originally from Canada. I did all my training in Canada at a couple of different schools, McMaster, Queens, Western University. Before medicine, I was always interested in the arts, always interested in writing, always interested in teaching. So that's something that's really, I guess, come forth throughout my medical practice. During my time at Western, I trained as a gastrointestinal medical oncologist, so that's my clinical practice. But on the side, as you've noted, I've done some work in medical education, got my Masters through Dundee, and now doing my PhD through Maastricht in the Netherlands, which I'm very excited about. Mikkael Sekeres: That's fantastic. What's your PhD in? Beatrice Preti: Health Professions Education. Mikkael Sekeres: Wonderful - can never get too much of that. And can I ask, are you at the stage now where you're developing a thesis and what's the topic? Beatrice Preti: Yeah, absolutely. So the program itself is almost exclusively research based. So I'm thinking of more of a social psychology side, looking at impression management and moral distress in medical trainees, and really along the continuum. So what we're looking at is when people act in ways or feel that they have to act in ways that aren't congruent with what they're feeling inside, why they're doing that and some of the moral tensions or the moral conflicts that go along with that. So a good example in medicine is when you're with a patient and you have to put on your professional face, but inside you might be squirming or you might be scared or worried or anxious or hungry, but you can't betray that with the patient because that would be unprofessional and also unfair to the patient. Mikkael Sekeres: Wow, that's absolutely fascinating. How does that change over the course of training? So how does it change from being a medical student to a resident or fellow to a junior faculty member? Beatrice Preti: So I'm only one year into the PhD, so I don't have all the information on this as yet. Mikkael Sekeres: You don't have all the answers yet? What are you talking about? Beatrice Preti: Yeah, they're telling me I have to finish the PhD to get all the answers, but I think that we certainly are seeing some kind of evolution, maybe both in the reasons why people are engaging in this impression management and the toll it takes on them as well. But stay tuned. It might take me a couple of years to answer that question in full. Mikkael Sekeres: Well, I just wonder as a, you know, as a medical student, we go into medical school often for reasons that are wonderful. I think almost every essay for somebody applying to medical school says something about wanting to help people, right? That's the basis for what draws us into medicine. And I wonder if our definition of what's morally right internally changes as we progress through our training. So something that would be an affront to our moral compass when we start as a medical student may not be such an affront later on when we're junior faculty. Beatrice Preti: Yes, definitely. And I think there's a lot of literature out there about coping in the medical profession because I think that by and large, especially in the lay community, so premedical students, for example, but even within our own profession as well, we don't really give enough credence to the impact a lot of the things that we do or witness have on us personally. That lack of insight doesn't allow us to explore coping mechanisms or at least think things through, and oftentimes what we're seeing is a survival instinct or a gut reaction kick in rather than something that we've carefully thought through and said, you know, “These situations are stressful for me, these situations are difficult. How can I cope? How can I make this more sustainable for me, knowing that this is an aspect of medicine that really isn't escapable.” Mikkael Sekeres: What a fascinating topic and area to be studying. I can't wait for all of the findings you're going to have over the course of your career. But oncology is a field that's, of course, rife with these sorts of conflicts. Beatrice Preti: Yeah, definitely. Mikkael Sekeres: I'm curious if you can talk a little bit about your own story as a writer. You say you've always been a writer. How long have you been writing reflective pieces? Beatrice Preti: Oh, goodness. So there's certainly a difference between how long I've been writing reflective pieces and how long I've been writing good reflective pieces. I can vaguely remember, I think being perhaps 10 years old and writing in school one recess period, sort of both sides of a loose leaf piece of paper, some form of reflection that would have ended up straight in the rubbish bin. So that was probably when it started. Certainly in medical school, I published a fair bit of reflective writing, poetry. That continued through residency, now as a junior attending as well. Mikkael Sekeres: Well, you're excellent at it and I can't see any rubbish can that would accept your pieces for the future. If you feel comfortable doing so, can you tell us what prompted you to write this particular piece? Beatrice Preti: Yes. So this piece was written Friday night around 9:00, 10:00 at night, literally at the end of the clinic day that I described. Coming on the heels of talking about coping, I think for many people in medicine, writing is a coping mechanism and a coping strategy that can be quite fruitful and productive, especially when we compare it to other potential coping strategies. Sometimes it's certainly difficult to write about some of the things we see and certainly it's difficult sometimes to find the words. But on this particular night, the words came quite easily, probably because this is not an isolated incident, unfortunately, where we're seeing patients coming for second opinions or you're encountering patients or you're encountering people who you are not directly treating in your everyday life, who express frustrations with the health care system, who express frustrations with not feeling heard. I think all you have to do is open social media, Facebook, Reddit, and you'll see many, many examples of frustrated individuals who felt that they weren't heard. And on one hand, I'm not naive enough to think that I've never left a patient encounter and had that patient not feeling heard. I'm guilty of many of the same things. Sometimes it's nothing that we've done as physicians, it's just you don't develop a rapport with the patient, right? But it made me think and it made me wonder and question, why is there this mismatch? Why are there so many patients who come seeking someone who listens, seeking a solution or a treatment that is maybe not standard, but might be a better fit for them than the standard? As you know, oncology is very algorithmic, and certainly, as many of the the fellows and residents who come into my clinic learn, yes, there are guidelines and yes, there are beautiful flow charts that teach us if you have this cancer, here's the treatment. But for me, that's only half of the practice of oncology. That's the scientific side. We then have the art side, which involves speaking to people, listening to them, seeing them as people, and then trying to fit what we're able to do, the resources we have, with what the patient's goals are, with their wishes or desires are. Mikkael Sekeres: I completely agree with you. I think sometimes patients come to our clinics, to an examination room, and they look at it as a place to be heard, and sometimes a safe space. You'll notice that, if you've been practicing long enough, you'll have some couples who come in and one of our patients will say something and the partner will reflect and say, "Gee, I never heard you say that before. I never knew that." So if people are coming in expecting to be heard in a safe space, it's almost nowhere more important to do that when it comes to treating their cancer also. Beatrice Preti: Yes. And as I say again to many of our learners, different specialties have different tools to treat or help alleviate sickness, illness, and suffering. For example, a surgeon has quite literal tools. They have their hands, they have their eyes, they're cutting, they're performing procedures. By and large, especially in medical oncology, we are quite limited. Certainly I have medications and drugs that I can prescribe, but in the world of GI oncology, often these are not going to lead to a cure. We are talking about survival in the order of months, maybe a year or two if we're very lucky. So the tool that we have and really the biggest, best treatment that we can give to our patients is our words and our time, right? It's those conversations that you have in clinic that really have the therapeutic benefit or potential for someone who is faced with a terminal illness and a poor prognosis more so than any drug or chemotherapy that I can give as a physician. Mikkael Sekeres: I love the notion that our words and our time are our tools for practicing medicine. It's beautiful. You mentioned in your essay three patients who, quote, and you're very deliberate about using the quote, "refused" because it's a loaded term, "refused" recommended medical intervention such as chemotherapy or surgery. Can you tell us about one of them? Beatrice Preti: Ah, well, I would have to be... /episode/index/show/aoopodcast/id/38058350

Transcription: Phone Call, 2018: A Mother’s Love in Illness 06/24/2025

Transcription: Phone Call, 2018: A Mother’s Love in Illness Listen to Journal of Clinical Oncology's Art of Oncology poem, "” by Elane Kim, a student at Harvard College. The poem is followed by an interview with Kim and host Dr. Mikkael Sekeres. Kim shares her poem that lingers in the spaces between words; a mother and daughter navigating illness and memory. TRANSCRIPT Narrator: , by Elane Kim Spiculated mass, irregular contours. Can you come to translate these words? Something in the lung. Yes, I am eating well. Birds, green ones, are nesting outside the window. Singing as if they aren’t young but dying. Lately, I have been singing. Since we last spoke, the snow has melted into pearls. Rare and pale, glittering like it’s the last time you’ll ever see it. Will you come see it? In Korea, we say magpies bring good luck. I dreamt of one the last night I slept well. Though you are my daughter, I feel like a child. In our language, the word for cancer comes from the character for mouth. The fruit you bought is too tough to swallow. The cough is worse in the mornings and after rain. When you were younger, you loved the rain. If I could do anything, I would like to see the snow. To see it for the first time again, the cold a shivering afterthought. Time passes in pieces: one appointment, then the next. Monday, can you ask the doctor about the prescription? Will it be stronger? Every new day is an empty one. No appetite. No warmth. I hope I did not give you a rotten body, my body. Will I be stronger? I feel a shattering inside. Hello? You are breaking up. Remember to eat well, daughter. Remember to call home. 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 are joined by Elane Kim, a student at Harvard College. In this episode, we will be discussing her Art of Oncology poem, “Transcription: Phone Call 2018.” At the time of this recording, our guest has no disclosures. Elane, what a joy to have you on our podcast. Welcome and thank you for joining us. Elane Kim: Thank you so much for having me - very excited. Dr. Mikkael Sekeres: So am I actually. Elane, I was wondering, I think you may be one of the youngest authors we’ve accepted a piece from. You had an absolutely gorgeous poem that you submitted to us and we were so thrilled that you chose us for your submission and ultimately that we were able to publish it. Elane Kim: Oh, that’s so exciting. Dr. Mikkael Sekeres: So, can we start out with just kind of some general questions about you? Can you tell us about yourself? Where are you from? And walk us through how you reached this point in your career. Elane Kim: I’m originally from California, but I moved to the East Coast for college and I’m also a writer. I love to write fiction and poetry. When I first started writing, I wrote for fun for a really long time, but I started to kind of take it seriously in middle school because I went to this one slam poetry event and I remember I went home and I told my mom, “I am going to be a poet.” And so ever since then, I’ve been writing poetry and it’s been really awesome for me because it’s my way of expressing myself and translating my world into words and having a space where I’m able to experiment fearlessly. So I love to write and it’s been a journey for me because I started publishing little poems here and there. And now my debut full length is coming out early next year with a small and lovely press. So I’m very excited and also honored to be on this podcast with you. Dr. Mikkael Sekeres: Elane, I can tell you as a parent of a daughter who’s a rising senior in college, it’s every parent’s dream when your child comes home and says, “I want to be a poet.” So the question I wanted to ask is, are you a writer who dipped her toe into medicine or are you an aspiring doctor who dipped her toe into writing? Elane Kim: Oh my gosh, it’s hard to say. I really love science, but I also really love writing. So I think maybe it comes from a place of wanting to do both because I also think that, I don’t know, I really, really admire doctors for everything they do because from everything I’ve seen, I feel like medicine is a place where I think you need to have very deep empathy in order to proceed. So I also think writing is a place where you need empathy and so I think maybe a little bit of both. It’s sort of hard for me to see which angle. Dr. Mikkael Sekeres: That’s okay. You still have a couple years in college and, of course, the rest of your life to figure that out. But I think you’re right. We obviously meet a lot of doctors who are writers. That’s probably the main phenotype of the sort of person who submits something to the Art of Oncology at JCO. But I’ve always felt there’s a lot of overlap between the two because inherently medicine is about storytelling. A patient comes to us with a story of illness. We tell that story to ourselves, to our colleagues when we’re getting consults, and eventually we’re trying to find the denouement of that story, where we have an answer for the story of illness. So I think it’s great that you’re still open to both aspects of this, writing and medicine, and I completely agree with you. I do think there’s a lot of overlap between the two. Elane Kim: I think that’s really beautiful. Dr. Mikkael Sekeres: Tell us about your journey as a writer then. So you talked about going to a poetry slam, but of course, you had to have gone there with a piece of poetry to participate. So when did you start writing poetry? Elane Kim: I always wrote poetry for fun. I loved making cards and stuff for my parents and my family for every little event. So I was my own like Hallmark factory. So I used to write really silly things and so whenever like people wanted cards or anything, I always had a poem ready. But then I started taking it seriously after this slam poetry event. I feel like slam poetry is very rooted in emotion and performance. And so all the poets there are so awesome and they really like are able to get into character and share their story in a very like raw way, which I thought was so, so awesome. And it was sort of the first time I had seen poetry as less of a vehicle for like a Valentine’s Day joke or something and more of an actual story with like a punchline with a lot of character and individuality. And so that was sort of a space where I saw all these poets who were so excited about what they were doing and able to tell a story about something bigger than themselves. And so I think that was kind of a turning point and little middle school me, I was like, “This is totally what I want to do and totally something I want to pursue.” And although I no longer am like strictly in the spoken word space, I still think every single poem should be read aloud and should be shared with people in a space where everyone’s listening and everyone’s able to gain something new from it. Dr. Mikkael Sekeres: It’s beautifully stated. And you know, that notion of reading words aloud is so important and that’s advice that I give to some of my mentees even in scientific writing. As they’re moving along, I’ll actually say to them, “Okay, now read that paragraph or those sentences out loud and tell me if they make sense.” And as they’re reading them, they’ll often realize, “Wait a second, it’s constructed the wrong way. And I’m burying the lead or the grammar doesn’t quite work out.” And they rewrite it. So I love the fact that you talk about writing as something that should be read out loud. I think that’s true whether you’re writing creatively with poems or narrative pieces or even in scientific writing. Can you tell us what prompted you to write “Transcription: Phone Call 2018?” Elane Kim: Kind of like the title suggests, I wrote this poem after I had a phone call with a loved one that really stayed with me because I think there were a lot of, I guess, distances that were traversed through that phone call and it was a little bit more about what was left unsaid as opposed to what was said. So the poem is- it kind of addresses this, but there are language barriers, generational gaps, and also like the weight of illness that’s bearing on this conversation that sort of bleeds into everyday life. And so I was thinking a little bit about how people can often carry conversations across physical distance and also emotional distance, especially in immigrant families, for example, where a lot of the times communication is something more emotional or cultural rather than something that’s, you know, said through sentences. And so I think that the poem is both like a literal transcription of a phone call that’s like spliced up, but also maybe like an emotional transcription where we’re trying to preserve this moment of love and tenderness between a mother and a daughter. Dr. Mikkael Sekeres: It’s really a terrific piece. I keep saying this over and over again. You captured so much in so few words, which of course, is the goal of poetry. One of the things that I loved about your poem is how you captured the fractured nature of phone calls, particularly if you’re hearing bits and pieces on either side of the phone call. You start the poem focusing on otherness. I mean, right out of the gates, on being an outsider. Your first line is “Spiculated mass, irregular contours,” which is some of our medical speak. And then the next line immediately says, “Can you translate these words?” You’re already saying the person, the character who’s speaking that line doesn’t get it, right? It doesn’t make sense to them. They need help in figuring it out. Can you talk about this from the perspective of coming from another country or culture and as a neophyte to medical terminology? Elane Kim: Definitely. It’s so awesome that you’re able to notice all these small details and everything. That’s so awesome. Dr. Mikkael Sekeres: It’s a testimony to your writing. You’re a great writer. Elane Kim: That’s so kind of you, but I’m very excited to get to talk about all this. Yeah, like you said, there’s like an insider/outsider dynamic. I guess as somebody who might be new to this country, there’s also somebody who’s new to medicine and how there can be a lot of barriers there where if you don’t have somebody who’s acting as somebody who can be in both worlds at once and translate these things, then you’re sort of left in the dark. And I think the role of translator is very important here because you’re not totally in one world or the other. You’re kind of this floating being who is in charge of traversing both worlds and bringing, in this case, the mother from one to the next. But because of this, I think that sort of suggests that the person who is receiving the phone call is not totally comfortable in one world or the other world. They’re sort of playing this mediator role. And I think that also maybe speaks to belonging in this poem as well. Dr. Mikkael Sekeres: Yeah. It really emphasizes how critical it is, particularly with serious diagnoses in medicine like cancer, that people bring with them another set of ears, or sometimes we’ll joke and we’ll say they bring an ectopic brain with them, someone else who can listen because it’s not only the medical terminology that people trip over, but like you say, it’s the emotions of the diagnosis and how receptive people are to the information. So they need somebody else there as another source of truth and another advocate to ask the right questions and also make sure that what the patient is hearing is what’s being said and vice versa. So, are there poets who’ve been particular influences on you and if I could ask, who and how? Elane Kim: When I was first starting out, I really appreciated slam poets and I still do. I love slam poets. I remember I would go home and watch YouTube videos like over and over of these poets performing their work. For example, I really love Sarah Kay. I also really love Hieu Minh Nguyen. Both of them, oh my gosh, so, so awesome. And I think they bring a lot of, especially Sarah Kay, she brings a lot of whimsy into her work and also a lot of naturalistic references and also like scientific references that you wouldn’t necessarily expect. Like, she has this one poem about these birds called starlings and when they fly together, they fly in the big shape of another starling, which is really fascinating, but also very poetic. I listened to that. I was like, “Wait, that is so awesome that nature knows to do that.” So things like that, I think I take a lot of inspiration from whenever there’s something I learn about in, say, like my bio class. I’m like, “Write that down, write that down.” Because I’m like, “Oh, that could be something I put in my next poem.” But I also really love a lot of Asian and Asian American writers who have been big inspirations to me. I really love Jenny Xie. She has a collection called Eye Level, which blows me away every time I see a poem from it. I also love Chen Chen. He has this one poem, “When I Grow Up I Want to Be a List of Further Possibilities,” and I love that poem. It was one of the first poems I really fell in love with. Dr. Mikkael Sekeres: You’ve given me and our listeners a list of people to look up and to read. It’s great. I’m curious about your writing process. What triggers a poem and how do you face the dreaded blank page on your computer? Elane Kim: So the way you avoid that is you never have it for too long. My method of writing, tried and true, is I have this one document where I collect everything and it’s like my scraps and even the most random, like, ‘this would never go in a poem’ random like throwaway lines, I put them all in one ginormous document. I don’t know what I’m going to do if I lose access to it, to be honest, because it’s like many, many pages. Basically, I just collect everything there. Like I will be in class and I will hear someone say something that’s like just in a conversation, but I’m like, “Wait, that’s kind of poetic.” And I write it down or like walking down the street and I’m looking at the water. I’m like, “Huh, that water looks a lot like this.” And I write that down. And so I have this huge, huge running document that has all these random lines. And so for me, I think writing is less about going into a document and like just type, type, type, type. It’s more about for me like, how can I take these fragments and put them into a story? Like these random fragments. How can I tell a story out of these pieces that seem disparate initially? For me, I don’t have a blank page for too long. My issue is like, how can I make this random mess of words into something that actually tells a story? But I think that’s the most fun part of writing also is like putting together this puzzle. Dr. Mikkael Sekeres: I have to say it’s also the most fun part of medicine. We’re handed chaos in oncology and we’re asked to put it together into a story and hopefully a story with a happy ending. So that’s great. Elane Kim: I love that. Dr. Mikkael Sekeres: So you’re welcome to write that down in your scraps. Elane Kim: Oh my gosh, it’s going in there. Dr. Mikkael Sekeres: So, I wanted to end by actually quoting the end of your poem, which was amazing. And the poem reads like this and one of the characters says, “I feel a shattering inside. Hello? You’re breaking up. Remember to eat well, daughter. Remember to call home.” And it’s a marvelous, marvelously unsettling ending where both the phone call and the character are breaking up, while the character maintains her concern for her daughter. Do you think she’s retaining some control of a cancer that obviously has gone beyond her control by expressing her maternal concerns about her daughter’s welfare? Elane Kim: Definitely. I think this poem is a lot about how the mother experiences this loss of control. I think there’s a moment where the mother and daughter sort of switch roles during the process of her care. She talks about how she starts to feel like a child again or she starts to feel less like a mother and more like the daughter. But I think at the end of the day, the way she expresses her care for her daughter is the way that she always has through like these small gestures. No matter how sick she is, her first concern is always her daughter and whether, you know, she’s getting her meals in and just hearing her voice over the phone is something that she looks forward to. And so I think being able to like put somebody else above yourself even when your body is at its most sick is something that, I don’t know, I think I find it very sad, but also I think a lot of mothers would also relate to putting your child above other things in moments of illness. And so I think it’s a very poignant moment, but also, yeah, one that kind of rings true. Dr. Mikkael Sekeres: It’s a poignant moment in an extremely poignant poem and beautifully written. We’ve been talking to Elane Kim about her poem, “Transcription: Phone Call 2018.” Elane, I want to thank you so much for joining us today. You are so incredibly accomplished and I can’t wait to read all of your future pieces as well. Elane Kim: Oh, thank you so much. Narrator: 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 or follow us 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, thanks 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. so you never miss an episode and leave a rating or review. Guest Bio: Elane Kim is a student at Harvard College. /episode/index/show/aoopodcast/id/37133260

A Whipple of Choice: Choosing Between Debilitating Surgery or Watchful Waiting 06/10/2025

A Whipple of Choice: Choosing Between Debilitating Surgery or Watchful Waiting Listen to ASCO’s Journal of Clinical Oncology Art of Oncology article, "” 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: , 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... /episode/index/show/aoopodcast/id/36924260

An Oncologist's Guide to Ensuring Your First Medical Grand Rounds Will Be Your Last: Lessons on How NOT to Induce Coma in Your Audience 05/13/2025

An Oncologist's Guide to Ensuring Your First Medical Grand Rounds Will Be Your Last: Lessons on How NOT to Induce Coma in Your Audience 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: , 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... /episode/index/show/aoopodcast/id/36548910

Writing a Medical Memoir: Lessons From a Long, Steep Road 04/22/2025

Writing a Medical Memoir: Lessons From a Long, Steep Road Listen to ASCO’s Journal of Clinical Oncology Art of Oncology article, "” 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: , 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... /episode/index/show/aoopodcast/id/36226145

Tamales: Celebrating a Mexican Christmas Tradition 04/10/2025

Tamales: Celebrating a Mexican Christmas Tradition Listen to ASCO’s Journal of Clinical Oncology Art of Oncology article, "” 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: , 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... /episode/index/show/aoopodcast/id/36085010

The First Hero: A Son Reflects on His Father’s Illness 03/25/2025

The First Hero: A Son Reflects on His Father’s Illness Listen to ASCO’s Journal of Clinical Oncology Art of Oncology poem, "” 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: , 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. 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. /episode/index/show/aoopodcast/id/35795680

I Hope So Too: Creating Space to Hope with Patients and Families 03/13/2025

I Hope So Too: Creating Space to Hope with Patients and Families Listen to ASCO’s Journal of Clinical Oncology Art of Oncology article, "” 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: , 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... /episode/index/show/aoopodcast/id/35672450

Cancer Stories: The Art of Oncology

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