Cancer Stories: The Art of Oncology

• The Man at the Bow: Remembering the Lives People Lived Prior to Cancer

  Listen to JCO's Art of Oncology article, "The Man at the Bow" 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: The Man at the Bow, 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 something terrible and everyone will remember this podcast, but I fancy myself an amateur electrician and plumber and carpenter and do these sorts of projects. So I go into interactions with patients wanting to learn about their lives and how they live their lives to see what I can pick up on as well, how I can take something out of that interaction and actually use it practically. My father-in-law has this phrase he always says to me when a worker comes to your house, he goes, he says to me, "Remember to steal with your eyes." Right? Watch what they do, learn how they fix something so you can fix it yourself and you don't have to call them next time. So, for me it's kind of fun to hear how people have lived their lives both within their professions, and when I practiced medicine in Cleveland, there were a lot of farmers and factory workers I saw. So I learned a lot about how things are made. But also about how they interact with their families, and I've learned a lot from people I've seen who were just terrific dads and terrific moms or siblings or spouses. And I've tried to take those nuggets away from those interactions. But I think you can only do it if you open yourself up and also allow yourself to see that person's humanity. And I wonder if I can quote you to you again from your essay. There's another part that I just loved, and it's about how you write about how a person's identity changes when they become a patient. You write, "And in that moment the full weight of what he had lost hit me as forcefully as a cresting wave. Not just the physical decline, but the profound shift in identity. What is more, we all live, me included, so precariously at this threshold. In this work, it's impossible not to wonder, what will it be like when it's me? Will I be seen as someone who's lived many lives, or whittled down only to someone who's sick?" Can you talk a little bit more about that? Have you been a patient whose identity has changed without asking you to reveal too much? Or what about your identity as a doctor? Is that something we have to undo a little bit when we walk in the room with the stethoscope or wearing a white coat? Dr. Alexis Drutchas: That was really powerful to hear you read that back to me. So, thank you. Yeah, I think my answer here can't be separated from the illness I faced with my family. And I think this unanimously filters into the way in which I see every patient because I really do think about the patient's dignity and the way medicine generally, not always, really does strip them of that and makes them the patient. Even the way we write about "the patient said this," "the patient said that," "the patient refused." So I generally very much try to have a one-liner like, "Suresh is a X-year-old man who's a barge captain from X, Y, and Z and is a loving father with a," you know, "period. He comes to the hospital with X, Y, and Z." So I always try to do that and humanize patients. I always try to write their name rather than just "patient." I can't separate that out from my experience with my family. My sister six years ago now went into sudden heart failure after having a spontaneous coronary artery dissection, and so immediately within minutes she was in the cath lab at 35 years old, coding three times and came out sort of with an Impella and intubated, and very much, you know, all of a sudden went from my sister who had just been traveling in Mexico to a patient in the CCU. And I remember desperately wanting her team to see who she was, like see the person that we loved, that was fighting for her life, see how much her life meant to us. And that's not to say that they weren't giving her great care, but there was something so important to me in wanting them to see how much we wanted her to live, you know, and who she was. It felt like there's some important core to me there. We brought pictures in, we talked about what she was living for. It felt really important. And I can't separate that out from the way in which I see patients now or I feel in my own way in a certain way what it is to lose yourself, to lose the ability to be a Captain of the ship, to lose the ability to do electric work around the house. So much of our identity is wrapped up in our professions and our craft. And I think for me that has really become forefront in the work of palliative care and in and in the teaching I do and in the writing I do is how to really bring them forefront and not feel like in doing that we're losing our ability to remain objective or solid in our own professional identities as clinicians and physicians. Mikkael Sekeres: Well, I think that's a beautiful place to end here. I can only imagine what an outstanding physician and caregiver you are also based on your writing and how you speak about it. You just genuinely come across as caring about your patients and your family and the people you have interactions with and getting to know them as people. It has been again such a treat to have Dr. Alexis Drutchas here. She is Director of the Core Communication Program at 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 joining us. Dr. Alexis Drutchas: Thank you. This has been a real joy. 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 save 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 the ASCO podcast 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: Like, share and subscribe so you never miss an episode and leave a rating or review. Guest Bio: Dr. Alexis Drutchas is a palliative care physician at Dana Farber Cancer Institute.

  --------  

  26:28

  --------

  26:28
• Reflection: When Cancer Affects a Family Member

  Listen to JCO's Art of Oncology article, "Reflection" 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: Reflection, 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: Like, share and subscribe 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.

  --------  

  20:49

  --------

  20:49
• A Fight Bigger than Myeloma: Race Relations and Bias in Medicine

  Listen to JCO's Art of Oncology article, "A Fight Bigger Than Myeloma" 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: A Fighter Bigger Than Myeloma, 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 think that speaks to racial injustices, you know, I was certainly profiled looking back then, I've been held by TSA in the past, but even that is very minor compared to what African Americans have dealt with here. And this patient in just kind of sharing her tidbits during our time together, I was not directly asking her so much of this. She was really offering a lot of it to me as we would talk and she would be very generous in sharing parts of her story. And over time I kind of understood the broader narrative of her life. You know, it was clear how much of all that was actually in the forefront of her head. Adeel Khan: And I think she might have been a little bit more unique in the way that she kept it there, but she was hyper vigilant of issues of society and the roots that brought a given society to where it is here. I kind of got to know her, this is during the COVID pandemic and this was after the injustice of what happened to George Floyd and so it was a theme that I think people were talking about more and so I think she felt comfortable in saying really what was quite a bit that was stewing in the back of her head seemingly at all times. Mikkael Sekeres: It's so interesting you talk about what you endured after 9/11 as being, I'm going to quote you now, "minor" compared to what she's been through, but even a minor affront like that can really compromise your trust. You write about her, "As a Black woman from the deep South, she had grown up learning how to navigate a healthcare system that did not always believe her." Can you expand on that a little bit? How is it that the healthcare system didn't believe her and what can we do going into interactions with patients from different backgrounds where we're incorporating that there's a compromise of trust and we have to make up for that? Adeel Khan: Yeah, and I think you know, it's so unfortunate that so many people have stories like this where, in her case really it was back pain that was her presenting symptom. This is long before she knew me. And she'd had the back pain for quite some time, but being an older woman, she was in her 70s at that time, she was not in phenomenal health for other reasons. It sounds like she was just kind of ignored, told that it was old age, tendon changes, she did not have meaningful imaging for some time. When she finally did after seeing a slew of different providers, that's when it was revealed like there's something more significant here. And then when you kind of piece that a little bit retrospectively and I think she certainly sensed this and I did when I- hindsight's always 20/20, when I looked through things, it's like, well, this probably could have been caught much earlier. It's just that no one really I think listened to what she was speaking to with her pain and the gravity that was actually behind it. And it just speaks to the fact that I think we have to be more thoughtful in what we take away from patients and not to ignore even small comments because they might be revealing of something much bigger behind them. Mikkael Sekeres: You quote her, you have some really great quotes in your essay where you just listen to what she says and transcribe it because what she says is very meaningful. And one of the quotes you provide from her is, "They don't hear pain the same when it comes from someone like me." Wow. "When it comes from someone like me," someone like her, how was it that people weren't hearing her description of pain, something that was different that was going on in her body and how can we be more attentive to people when they complain about things like pain? Adeel Khan: It's unfortunate that there's even known data to show how depending upon a patient's melanin content in their skin, how likely they are to get pain medications and what happens to them is different and this is an unfortunate example of that where I think she just wasn't heard properly. And so it wasn't addressed properly and she was not shy about saying that. I mean I think she sensed that. She was very clear in feeling that herself and in wanting to have better care, she was still prevented and hence why she had to go from provider to provider. Mikkael Sekeres: You've lived in a bunch of different places in the country. I mean, following your path, you've been in Oklahoma, you've been in Michigan, Ohio, Massachusetts, and now Texas. Do you think that we as providers have to have different levels of sensitivity depending on where in the country we're practicing and how some of our patients' trust in healthcare may have been compromised in those different parts of the country? Adeel Khan: I think absolutely. I mean this particular patient was from Alabama which has a heavy history that she was again very aware of and for those of us reading history books are also very aware of too. And it's interesting how, while the U.S. is in some ways- has some aspects that are monolithic, but it's very much not so. It's very patchy and people are different, you know, if I take one theme that we're talking about here is obviously racial injustice, but if you take something like obesity, you know, prevalence rates are very different throughout the country and attitudes surrounding it are also very different. And I think we do- ought to be mindful that in treating the patient in front of us, it's not done without context. And so how they view their illness and their situation is going to be different depending upon the state, depending upon the city, depending upon actually even the era that they grew up in. So I would say now, if you took actually a similar patient, but you put her in a very modern context post-year 2000, she's likely to have different feelings of the situation around her than someone who was born in this case in the 1940s. And that just speaks to the fact that circumstances change and we should be recognizing that as providers, even though it's not always easy to. Mikkael Sekeres: Well, it just emphasizes how very important it is to know the history of the place where we practice and how it's affected our patients' perceptions of healthcare and trust and being cared for, particularly now as there's such a movement to whitewash that history and eliminate it from major institutions like the Smithsonian. It has been such a pleasure to have Adeel Khan here. He is Assistant Professor of Medicine, Public Health at UT Southwestern in Dallas and wrote just a great JCO article called "A Fight Bigger Than Myeloma." Adeel, thank you so much for submitting your article and for joining us today. Dr. Adeel Khan: Thank you so much for having me. It's been a pleasure. 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 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 Like, share and subscribe so you never miss an episode and leave a rating or review.  Guest Bio: Dr Adeel Khan is an Assistant Professor of Medicine and Public Health at UT Southwestern.

  --------  

  25:52

  --------

  25:52
• Whispers After the Cure: Reflections on Marriage and Malignancy in India

  Listen to JCO Global Oncology's Art of Global Oncology article, "Whispers After the Cure: Reflections on Marriage and Malignancy in India" 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: Whispers After the Cure: Reflections on Marriage and Malignancy in India, 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. Mikkael Sekeres: Yeah, he'd been through it himself. And the irony, of course, is that most cancer treatments that we give do not lead to infertility, so it's a complete misperception. Harshil Vangipuram: Yeah. Mikkael Sekeres: Tell us about your future. What are the next steps for you in your training and what do you hope to specialize in and practice? Harshil Vangipuram: Actually, I'm working on another paper which involves financial toxicity after treatment and post treatment depression. I think it would be completed in another year. And after that, after my med school is completed, I think I'm going to pursue oncology or hematology as my branch of interest. Mikkael Sekeres: Wonderful. It's thrilling to hear that somebody who is as sensitive to his patients and both their medical needs and their needs outside of medicine will be entering our field. It'll be great to know that you'll be taking care of our future patients. Harshil Vangipuram: The pleasure is all mine, sir. Mikkael Sekeres: Harshil Vangipuram, I want to thank you for choosing JCO Cancer Stories: The Art of Oncology and for submitting your great piece, "Whispers After the Cure: Reflections on Marriage and Malignancy in India" to JCO Global Oncology. To our listeners, 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 asco.org/podcasts. Until next time, this has been Mikkael Sekeres from the Sylvester Cancer Center, University of Miami. Have a good day. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Show notes:Like, share and subscribe so you never miss an episode and leave a rating or review. Guest Bio:Dr Vangipuram Harshil Sai is a fourth semester medical student at All India Institute of Medical Sciences. Additional Reading Impact of Gender of the Child on Health Care–Seeking Behavior of Caregivers of Childhood Patients With Cancer: A Mixed-Methods Study | JCO Global Oncology

  --------  

  23:39

  --------

  23:39
• Brown Paper Bags: Beware of Patients Bearing Gifts

  Listen to ASCO's Journal of Clinical Oncology Art of Oncology article, "Brown Paper Bags" 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: Brown Paper Bags, 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 those are just such heirlooms to me. Yeah, lots of really great things. I am curious about you. You have to have these treasures too in your life. Mikkael Sekeres: Oh, absolutely. Isn't it remarkable that people in the face of life threatening illnesses, and I probably have a patient population specializing in acute leukemia and myelodysplastic syndromes where their illness is often more acute than, than your typical patient in your patient population even, but even during those times, I am always so moved how people take the time to ask about us and want to know about our lives as physicians and take the time to give a gift. And sure, I have my own shelf of curios, I think that is how you refer to it in your essay, from patients and it is very meaningful. There was one patient I treated who was a baseball fan. We were both living in Cleveland at the time. I am a Yankees fan. Both my parents are from the Bronx, so they raised me the right way, of course, even though I was raised in Providence, Rhode Island. And she was a Red Sox fan, and every time she came to visit me, she would wear red socks. It became this ongoing joke. She would wear her red socks and I would remember to wear my Yankees socks. So when we reached the five year mark, she was cured of her leukemia, she gave me a framed box of red socks to hang up. So, yeah, we have these stories and they are immediately evocative of the person we took care of and built a relationship, hopefully a long term relationship with. Gift giving in oncology can be nuanced at times. Why do you think patients give gifts and why are they meaningful to us as caregivers? Dr. Stephanie Graff: I mean, I think that gift giving at its heart is sometimes just a more comfortable way to express emotion for so many patients, right? And humans, right? We give gifts to celebrate births, weddings, birthdays, anniversaries, major holidays, right, for our own friends and family. And so it makes sense that that cultural or social tradition exists where we give gifts to acknowledge and celebrate that someone is important and a part of our life. And so often, I think it is just a way for a patient to say, "You have been here for me, I see you, I see the work you do, I appreciate you." So it is a way to say thank you that to any individual patient feels bigger than just the words. Obviously, I want to say as- if any patient stumbles onto this podcast, just the words are more than enough and we do not even need that. Like it is my greatest honor to care for the patients that allow me to enter their lives and care for them. Like, I do not need them to tell me thank you. I certainly do not need them to give me a gift, but I think that is a big part of why patients do it. But I think another part of it is that in many ways, you know, we have all seen that when somebody is diagnosed with cancer, that they have this real reckoning with their family and friends where people that they thought were very good friends do not know how to show up for them. And so sometimes they see these shifting dynamics in their friend groups, especially maybe for our younger patients or mid aged patients that just their friends are so busy. There is lots that goes on, right, that I think that often the gift is saying, "Thank you for showing up." We were a constant in their life during that time and for many of my patients, they do not have that constancy from the other people in their life. And so again, if anyone stumbles onto this podcast and someone in your life that you love is diagnosed with cancer, the most important thing that any of us can do for someone battling a chronic illness is just show up. And I often tell people even uninvited, like, show up and offer to take their laundry back to your house, show up and drop off a meal because I think that the people saying, "Well, let me know what I can do," is not helpful because it is really awkward to tell people what to do when you are battling an illness. Mikkael Sekeres: That notion of presence is just so important and you enunciated it beautifully. When my patients say to me, "Oh, I want to get you something," I always respond the same way that you do. I always say, "Your good health is the greatest gift that I could hope for," and just the, just the words and the presence are enough. I wanted to end quoting you to yourself and asking you to reflect on it. You write, "I carry my patients and their families with me through life, recalling their anecdotes, wisdoms, and warnings at just the right moments." Stephanie, what are those moments when you lean on the anecdotes and wisdom of your patients? Dr. Stephanie Graff: Patients will say things to me about - oh gosh, I will get all teary thinking about it - you know, patients say things to me who are my, you know, stage four metastatic patients about what has mattered to them in life. And it makes it so easy for me to leave that thing undone and go home at the end of the day because none of them say, "It really mattered to me that I spent that extra hour at work or that I got that promotion or that raise." I am in the habit of, when I meet patients for the first time and they are at a visit with their husband or their wife or their partner, I will ask how long they have been together. And when patients tell me that it has been decades, 40, 50, 60 years, I will ask what the secret is, because I am at 17 years of marriage and I'd love to see 63, which is my record for a patient story. And my one patient during a visit, the wife and I were talking and I asked how long they had been married. We had already had a pretty long visit at that point when it came up, and the whole visit, the husband had just sat in the corner, very quiet, had not said a word. For all I know, he could have been nonverbal. And she said, "Oh, we have been married 60 years." And I said, "Oh my gosh, what is the secret?" And before she could even open her mouth, he goes, "Separate bathrooms." I think about it all the time. Like any time I am like annoyed with my husband getting ready in the morning, I am like, "Yep, separate bathrooms. It is the key to everything." Bringing those little moments, those little things that patients say to you that just pop back up into your mind are so wonderful. Like those rich little anecdotes that patients share with you are really things that stay with you long term. Mikkael Sekeres: So it does not surprise me, Stephanie, that you and I have settled on the same line of questioning with our patients. I wrote an Art of Oncology piece a few years ago called exactly that: "What I Learned About Love From My Patients," asking the exact same question. It was a fascinating exploration of long term marriage from people who say, "Oh, you have to have a sense of humor," which you always hear, to some things that were just brutally honest where somebody said, "Well, I could not find anybody better, so I just settled," right? Because they are in the oncologist's office and sometimes people will speak very dark truths in our clinics. But my favorites were always the people where I would ask them and the husband and wife would turn to each other and just hold hands and say, "I do not know, I just love her." And I always thought to myself, that is the marriage for me. Dr. Stephanie Graff: My husband and I trained together. He was a fellow when I was a resident. So we had one rotation together in our entire careers and it was in cardiology. Like he was like the fellow on cardiovascular ICU and I was the resident on cardiology. And the attending had been prodding this woman who had heart disease about how she needed to be more physically active and said something to the extent to the patient about how he could tell that she was more of a couch potato, that she really needed to get more active. Mind you, this is a long time ago. And her husband, I mean, they are older patients, her husband boldly interrupts the attending physician and says, "She may be a couch potato, but she is my sweet potato." And my husband and I every once in a while will quip, "Well, you are my sweet potato" to one another because we still, we both remembered that interaction all these years later. Like, that is love. I do not know what else is love if it is not fighting for your wife's honor by proclaiming her your 'sweet potato'. Mikkael Sekeres: Well, I cannot say just how much of a treat it has been to have you here, Stephanie. This has been Stephanie Graff, Associate Professor of Medicine at Brown University and Director of the Breast Oncology Program at Brown University Health in Providence, Rhode Island, discussing her Journal of Clinical Oncology article, "Brown Paper Bags." 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. Thank you 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.   Show Notes: Like, share and subscribe so you never miss an episode and leave a rating or review.    Guest Bio: Stephanie Graff, MD, FACP, FASCO is an Associate Professor of Medicine at Brown University and Director of Breast Oncology at Brown University Health in Providence Rhode Island   Additional Reading: What My Patients Taught Me About Love, by Mikkael Sekeres    

  --------  

  30:50

  --------

  30:50

Mais podcasts de Saúde e fitness

Podcasts em tendência em Saúde e fitness

Sobre Cancer Stories: The Art of Oncology

Cancer Stories: The Art of Oncology: Podcast do grupo