Cancer Stories: The Art of Oncology

American Society of Clinical Oncology (ASCO)
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Jul 26, 2022 • 23min

Good Genes

"Good Genes," by Kaitlin Demarest: a resident searches for answers after genetic testing. TRANSCRIPT Good Genes, by Kaitlin Demarest, MD1 (10.1200/JCO.22.00871) My mother was diagnosed with breast cancer when I was 5. I accompanied her to a handful of chemotherapy sessions and filled the time with MadLibs and word searches. The drive to the hospital became familiar; the diner where I celebrated my fifth birthday was on the way, as was the dairy bar and the Chi Chi's that shut down. I grew accustomed to her wearing wigs and remember vividly the time one almost flew off her head on a windy day at Rockefeller Center. I learned that vomit could be green and what a computed tomography (CT) scan was. This is not to say that I knew what was going on or what all of it meant. When she was first diagnosed, my dad explained that there was something scary growing inside my mom and her doctors needed to take it out. He drew an arrow coming out of a finger instead of breast tissue to help my young mind better grasp the concept. I was not sure why the cancer picked her breast to start growing in but that mattered little to me as my kindergarten logic figured it would be simple enough to take out. However, after "trying to get the cancer out" with surgery and chemo, she only seemed to get sicker. She would spend days on the couch after treatments, nauseous but not wanting the Coke syrup she would give me when I was sick. Eventually, she returned to work, her new head of hair much curlier than before, and things seemed normal again for a brief time. I can recall multiple times, almost yearly, that I believed she was cancer-free, but then I would overhear her telling someone over the phone that she needed to start treatment again. I clung to the belief that everything would be okay without a second thought, but then one day the summer after fourth grade, she told me and my brother that she would not be getting better. Soon she was in hospice care, and then she was gone. Losing her at 10 years old, there was so much I did not understand. I decided I wanted to become a doctor and tried to start my medical education as soon as possible to fill in these gaps. I wrote research papers on cancer topics in middle school, took as many science classes as possible in high school, and majored in molecular biology as an undergrad. I even spent a summer shadowing oncologists, including one of my mom's. He called me by her name a few times, which mostly warmed my heart that he still thought of her and reminded me that he had known her too. He was very kind, clearly doing the best for his patients. Watching him, I began to appreciate the rocky road of disclosing setbacks and poor prognoses as a provider. Despite a week of shadowing my mother's oncologist and countless visits with my aunt and uncle, both doctors, who had helped her navigate the treatment process and even took care of her when she was home on hospice, I refrained from asking about the genetics of my mother's cancer. Perhaps due to wishful thinking, I was under the impression that my mom had been tested for hereditary breast cancer syndromes while she was alive and that she was negative for BRCA mutations. But finally, at the end of my first year of medical school, over the karaoke music at a bar after my cousin's college graduation, my aunt told me that she had never been tested; I would need to be tested soon. I had been scared to receive the results of my genetic testing. I had faced mortality but avoided thinking about my own. I remember my heart pounding as I listened to my genetic counselor, trying to discern any doom or gloom in her tone. After she carefully explained that I carried no mutations known to be associated with cancer, I caught my breath and relief did wash over me. Then it was all over. Years of questioning, asking what if, bargaining, avoiding, wondering, hoping all tied up. "Take care of yourself, Kaitlin," she said, "Don't study too hard tonight." It was almost as if she knew. The sudden silence, the finality, and the lack of solace in my solitude; I felt panicked and empty. There would be no sticky little mutation to act as scapegoat for all my pain, no genetic alteration on which to pin her loss. I would not have to think so much about prophylactic mastectomies, only early screening. But I was devastated. I thought knowledge would mean power, but it turned out that ignorance was almost bliss. I secretly hoped for an answer, written in our DNA, a molecule I had come to understand so well, that would explain why I had lost my mom so prematurely. As a kid, I felt helpless against my mother's illness and these results only exacerbated that feeling. Studying molecular biology and human physiology granted me some sense of control, but my heart ached not knowing what happened inside of her organs, tissues, and cells. I knew a lot about cancer but virtually nothing about hers. I could not let cancer have any secrets. There are a lot of things I know and remember about her. Her love of grocery store–related game shows. Her frustration over untangling my hair each morning before school. Her Armenian way of dancing; her arms twirling along to Santana on the radio at a traffic stop. But it made me feel so far away from her to learn about the histology, diagnostic workup, and treatment of breast cancer and not know anything about her experience. Our time was cut short, so many stories left untold. Any morsel of information I could remember of her was proof of our time together and that our relationship was special, despite how young we both were when we were separated by her death. If I could not ask her about her hobbies growing up, her social life in college, or what it was like being pregnant with me, I was going to learn about what made that impossible. I remember hearing that my aunt and uncle still had her medical records and, after asking them, they arrived in the mail along with old Mother's Day cards and letters to Santa. The woman kept everything. It took me a few nights, locked in my room, chasing the grief with episodes of The Marvelous Mrs. Maisel, but I made it through every page. She had a modified radical mastectomy and a transverse rectus abdominus muscle flap reconstruction, an echocardiogram prior to doxorubicin, and required Neupogen to keep her white count up. Other things I had already known: menarche was at age 11 years, she wore a sleeve to improve the lymphedema in her left arm after her lymph node dissection, she had two c-sections, and she smoked cigarettes for a brief period. Also documented was my parents' divorce and the fact that they had me and my brother, our ages swapped. Everyone always thinks he is the older one. It was satisfying and heartbreaking. Now I knew the type of cancer and its stage and size at diagnosis. I knew that she had surgery followed by many cycles of chemotherapy then radiation and tamoxifen. After all of this, according to an office note, she was "basically doing extremely well." But I read on and on as her tumor markers kept rising. 52. 94. 178. 145. 375. Scan after scan showed no evidence of metastatic disease, until they finally did. One year, three CT scans, three bone scans, and a positron emission tomography CT later, she was found to have bilateral pleural effusions, liver metastases, and omental caking. She had been on estrogen deprivation therapy with Zoladex which was not working, so it was decided to perform a laparoscopic oophorectomy. The oophorectomy converted to an open procedure due to adhesions, bilateral Krukenberg tumors, and extensive carcinomatosis. Mostly lab sheets remained after that, with platelet counts and international normalized ratio checks after she was placed on warfarin for a blood clot. The very last page was a list of information requested by the cancer center at which she was to start another round of chemotherapy to control her progressive disease. On it, she wrote a note to remind herself to have the office reach out to my physician aunt with questions. Even at this stage, she had hope chemotherapy would prolong her life. As painful as it was, I got my answers, which showed me just how powerful and therapeutic it can be to feel informed. I had harbored so much grief for so long because not understanding my mother's cancer made her feel that much farther away. Many would expect the relief but not the heartbreak from hearing my negative results. The truth is, good news is good but it is also new. It does not erase the pain, worry, and loss that may have preceded it, and it does not necessarily indicate a clear path forward. New information can anchor us, quench our anxieties, or it can be an unpleasant surprise. My experience has taught me that you cannot predict how news will land on the ears and hearts of someone else. This makes it so important to leave one's own expectations behind and to give patients the time and space that they need to process. As healthcare providers, we always want to be the bearers of good news, but we must remember that every patient has an undocumented history and any conversation can be a delicate one. As I write, my internal medicine residency training quickly approaches. I am still shaking down cancer's secrets but feeling closer to my mother than before. As a physician, I will meet patients and their families on some of the scariest days of their lives. I cannot take away all of their fear, but I can walk with them through all of the knowing and not knowing and make space for relief and grief alike. I hope I will always remember that my every day could be the longtime culmination of loss, worry, and anticipation for someone else. I am grateful for the good genes, good memories, and good purpose in life my mom gave me, and I will do my best to make her proud. Dr: Lidia Schapira: Welcome to JCOs Cancer Stories: The Art of Oncology, brought to you by ASCO podcasts, which offer a range of educational and scientific content and enriching insight into the world of cancer care. You can find all of the shows, including this one at podcast.asco.org. I'm your host, Lidia Schapira, Associate Editor for Art of Oncology and Professor of Medicine at Stanford. And with me today is Dr. Kaitlin Demarest resident at the University of Pennsylvania. We'll be discussing her Art of Oncology article, 'Good Genes'. Our guest has no disclosures. Kaitlin, welcome to our podcast. Dr. Kaitlin Demarest: Thank you so much for having me. Dr: Lidia Schapira: It is a pleasure. I just like to start the conversation by asking authors to tell us what they're currently reading or what they recently enjoyed and would recommend to a colleague, what could I find on your night table? Dr: Kaitlin Demarest: I recently finished a book called Middlesex. It's not a very recent book, but it's actually one of the books that I remember my mom reading when I was a kid, and I've wanted to read it since then. It's incredibly beautifully written and it has a medical thread through it as well, I would absolutely recommend it. Definitely one of my favorites. Dr: Lidia Schapira: I really enjoyed that book. It's one of my favorites, too. So, you're currently a medical resident, correct? At Penn? Dr: Kaitlin Demarest: Yes, this is my second week. Dr: Lidia Schapira: And how's it going? Dr: Kaitlin Demarest: It's been so great. I started in the outpatient setting. So it's been nice to step into that PCP role. Dr: Lidia Schapira: Fantastic! Well, maybe we can even interest you in pursuing a career in cancer medicine. Dr: Kaitlin Demarest: Absolutely. Dr: Lidia Schapira: But let's turn to your essay, 'Good Genes'. You share with us that your mom was diagnosed with breast cancer when you were 5, and that you lost your mom when you were 10. Tell us a little bit about what motivated you to write the essay and then send it to us at JCO. Dr: Kaitlin Demarest: Sure! It actually was when I was writing my personal statement for residency applications. My mom's experience with cancer is very much linked to why I want to be a doctor. And so, I think that's why it came up when I was writing that personal statement. I think I just had a lot to put down on paper after I'd gone through her medical records. And it was really therapeutic actually, to write it all down. And a friend encouraged me to send it in. Dr: Lidia Schapira: There's an interesting comment there and one that I want to unpack a little bit. Writing to process an important emotional experience is therapeutic, but then the decision to share it, and in this case, perhaps share it with your future colleagues and attendings in medicine, requires sort of an additional step. What made you want to share the story with a broader community of cancer clinicians? Dr: Kaitlin Demarest: I think I was really comforted by my genetic counselor who probably hasn't read something like this, but she just seemed to be so in tune with the range of responses that someone can have when they get genetic testing results. And I wasn't even expecting the reaction that I had and I thought that maybe it could be helpful both to people who undergo genetic testing, but also to any provider who's delivering those results. Dr: Lidia Schapira: So, let's talk a little bit about the theme of your essay, sharing important medical news, in this particular case, the results of a genetic test. Tell our listeners a little bit about what made you want to be tested? And then how did you receive the news of the genetic test? Dr: Kaitlin Demarest: I knew I was going to need to be tested for a while because my mom was so young when she was diagnosed. So, it was indicated for me. And I understand how it can be a daunting decision for a lot of people. But I hold fast to the notion that knowledge is power. I'm very grateful that I underwent the testing and it really set me up with a great plan to get screening done very regularly. It's sort of a setup for that process. It honestly has brought me a lot of resolve knowing that I'm doing what I need to do in order to best protect myself for the future. Dr: Lidia Schapira: I'm very happy to know that you feel this resolve and you feel good about it. But you write in the essay and share with us that initially, it was devastating to hear that you did not have an inherited susceptibility that we could name. My interpretation of that statement and I want you to react to that was that in a way it made your mother's cancer more mysterious, not knowing the cause, not knowing what the danger was made the threat of the potential genetic susceptibility more vague and diffuse. Tell us a little bit about what it was for you. Dr: Kaitlin Demarest: Exactly. When I found out that I didn't inherit susceptibility, it did make it seem a bit mysterious, both for my mom and for myself. She didn't have genetic testing done, which makes it a little bit more confusing as well. But I think I was really hoping for an answer to explain why she was diagnosed so young, although that would have been difficult news to receive as well knowing that I had inherited something that could lead to cancer. Dr: Lidia Schapira: I found your insights incredibly powerful about the idea that news is just news, and the lens through which somebody receives the news may be different from that of the person who's sharing the news. You make this reflection that you hope that as a physician, you will sort of listen to what's happening with your patients. Tell us a little bit about this idea that even good news that you had good genes wasn't necessarily experienced by you in the moment as good? Dr: Kaitlin Demarest: Definitely news is new and it takes time to process that, even if it's expected to be good. And like you said before, I feel like it is good news now, but when I originally heard that information, I really needed to process what that meant, for me, but also, it just made me realize that there was more processing of my mom's death that I needed to do. Every time we deliver news to a patient, we have no idea what brought them to that space and what is going to come up when they receive that information. Dr: Lidia Schapira: I admire the genetic counselors. Their training is specific to their discipline, but they're also trained in communication skills. I think that is so incredible because, as you say, they can't anticipate how the news is going to land. They have that moment, that sort of teachable moment, to help people begin to process what they've just heard. So, let's talk a little bit about the other piece of the essay, which is that you sought to connect to your mother or you needed to understand the details of your mom's history. And so, you found her records when you were in medical school and sort of able to read through them. I have this image of you locking yourself up in your room instead of listening to Fabulous Mrs. Maisel and even getting some snacks and just pouring your heart and soul into reading this. Can you tell us a little bit about that experience? Dr: Kaitlin Demarest: I think, I would have loved to have processed this a lot sooner, but I think going through the medical records in medical school was a good time to do it because I had a better understanding of what I was reading. It took me probably three nights. I don't think they were three consecutive nights because it was definitely heavy. It was really difficult to read how things progressed and to understand the weight of it all. And not only to read what was happening in her records but to think back and remember those times and being able to look back at those memories with new knowledge filled in a lot of gaps for me, but it was definitely difficult. I feel like I have more to say but I'm struggling to find the words. Dr: Lidia Schapira: Reading your essay, I have the impression that there were many adults who tried to help you as you were developing your own ideas about what had happened to your mom - your aunt, your uncle, your mom's oncologist who allowed you to shadow him in the clinic, which I found very endearing. Can you tell us a little bit about what was helpful, and which ones of these experiences actually were helpful to you? Dr: Kaitlin Demarest: I remember when I received the results, and I was very upset. I called my dad and my stepmom. I think it was my dad who told me that my aunt would probably have her medical records. She sent them right away. Just knowing that my aunt and uncle who are both physicians helped her so much through this process has been incredibly helpful and just very touching. They've been so helpful to me and inspiring to me as I move forward through my medical career. They are the ones who helped me set up a time to shadow my mom's oncologist. And he taught me a lot about breaking news to patients. It was really amazing to get to work with him because I could see how much he cared for his patients and knowing that he was one of the people caring for my mom felt really good. Everyone in my family has been so encouraging of me since I said I wanted to be a doctor when I was 8 years old and they've never made me feel pressured to pursue anything in particular, but they never made me second guess this purpose. Dr: Lidia Schapira: As oncologists, we often tell our patients who are not going to be able to see their kids grow up that their kids are going to be alright and I hope your mom had that feeling that you were going to be alright. Listening to you now I can only imagine how proud she would be of the doctor that you've become and planned to be. What message would you like the readers of your essay and listeners of this podcast to take away from the story? Dr: Kaitlin Demarest: I hope that readers will not shy away from daunting news, whether that means they're the ones hoping to pursue testing or screening, or whether they are providers who are nervous about these kinds of conversations because while they can be very uncomfortable and they can be emotional, they're so, so worth having because they can really protect the health of a lot of people and it's a really great opportunity to form a very trusting relationship that can have a really positive impact for the long term. Dr: Lidia Schapira: And it gives meaning to our work as well. Dr: Kaitlin Demarest: Of course. Dr: Lidia Schapira: It's one of the reasons that many of us get up and go to the clinic every day or every week. It's been lovely to hear your story, Kaitlin. You're a terrific writer. Your insights are very powerful. I thank you for sharing your story with us and I sincerely hope that you consider a career in medical oncology. Dr: Kaitlin Demarest: I'm very much considering it. Thank you so much for having me. Dr: Lidia Schapira: Until next time, thank you for listening to this JCOs Cancer Stories: The Art of Oncology podcast. If you enjoyed what you heard today, don't forget to give us a rating or review on Apple podcasts or wherever you listen. While you're there, Be sure to subscribe so you never miss an episode of JCOs Cancer Stories: The Art of Oncology podcast. This is just one of many of ASCO's podcasts, you can find all of the shows at podcast.asco.org. The purpose of this podcast is to educate and 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.
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Jul 12, 2022 • 30min

My Mother's Last Lesson

In January 2017, while completing his residency, Dr. Colt Williams found himself taking on a second life-changing role when his 65-year-old mother was diagnosed with treatable cancer. The problem? She did not want to live. In this episode of Cancer Stories: The Art of Oncology, join Dr. Williams on his journey to navigate the intersection of oncologic, mental health, and end-of-life care from the dual perspective of physician and family member. TRANSCRIPT Narrator: My Mother's Last Lesson, by Colt Williams, MD (10.1200/JCO.21.02382) In January 2017, my 65-year-old mother was diagnosed with treatable cancer. The problem was that she did not want to live. Her mental health had declined precipitously after losing my father 8 years before, and her grief proved insurmountable. She had been a functional alcoholic for most of my life, and commonly smoothed over the roughness of a long day with half a bottle of whiskey. Growing up, alcohol had been ubiquitous to the point of banality, yet she was nonetheless able to lead a very successful life. But the silence of my father's absence was deafening, and her few moments of relief were only ever found at the bottom of a bottle. Her life came apart at the seams as she had stopped working, lost contact with most of her friends, and rarely left the house. Then, after years of limitless sorrow, when she was told she had advanced, but treatable squamous cell carcinoma of the tongue, she wanted to allow it to end her life. Despite a high chance of cure, my mother saw her situation as both cause and justification to end her life. Why pursue a painful and disfiguring treatment to save a life already devoid of light, companionship, or love? She argued that she had already lived a full and rewarding life, and without my father at her side, her existence had become a shell of its former self. Her advanced directive had stated "Do Not Resuscitate" as far back as my father's initial entanglement with cancer, nearly 10 years before. Long before any of these immediate issues arose, she had made it clear that, "When it's my time, it's my time." Her treatment team was clear that if she received the standard treatments, her probability of survival was excellent, but that the journey would be grueling. Removing a third of her tongue would likely leave her with permanent speaking and swallowing difficulties. Radiation to her mouth and throat would cause severe inflammation and pain. A temporary feeding tube would pump tasteless, khaki colored goo directly into her stomach to bypass her swollen mouth and throat. She was assured that she would be supported by an interdisciplinary team and given any, and all, measures to ensure her comfort. She asked what would happen if she chose not to pursue treatment. Her oncologist shifted on his stool, his arms crossing, and his speech slowing. I projected my own thoughts and discomfort onto his change of posture, "Why are you asking him that? It's treatable! Tell her, make her fight!" Her oncologist warned us that her cancer had the potential to slowly rob her of her ability to speak, eat, swallow, and eventually breathe. Even with treatment, there was still a chance she could end up in the same situation if the cancer did not respond or if it came back later. All I could think was "at least we would have tried." My mother found the idea of death comforting as she would be released from physical and emotional pain. After our initial visit with her oncologist, however, she became terrified of the symptoms she might experience as she was dying. I too was afraid of what would come. Nightmares of her choking while I watched on powerlessly were frequent over the next few nights. Still, she was not convinced that treatment was what she wanted. I pushed her, begged her to be treated. After a long, emotional, and arduous weighing of her options, I shared with my mother's doctors a collective sigh of relief when she reluctantly agreed to treatment. Two weeks before her surgery, I went to visit after my medical school classes. We had talked on the phone the night before, and our conversation had left me worried. My father's death was a common topic for us, but her perseveration on the irreparable void in her soul was alarming. I found her stumbling around the house, her shoulder dragging against the wall after she had careened into it. She was a drunk, but never this sloppy—something else was going on. She slid to the floor, eyes half-lidded. "I'm going to go find your dad." I found the empty bottle of morphine shortly after I had called 911; it was my father's from when he came home on hospice nearly a decade ago. She must have held on to it for all those years, her fire escape from a burning reality. The morphine was too old and there was too little left in the bottle to kill her, but the message her actions sent was loud and clear. Until examined and cleared by a psychiatrist, she was unsafe to be alone. She had a long history of bipolar disorder, acknowledged but untreated. Her mood would cycle between periods of working late every night to days at a time where she would not leave bed or even shower. There had been stints in the past where she had seen a psychiatrist or tried medication, but they never lasted. She enjoyed being colorful, eccentric, and prone to strong feelings. During the week of her hospitalization, there was no argument that she was unfit to make her own decisions and that her mental health needed serious attention. After she had returned to an acceptable level of risk to herself, she was discharged on several mood stabilizers and with a follow-up visit with a psychiatrist. She went for a few visits; I suspect more to affirm business as usual rather than out of genuine interest. She quickly stopped going, and her passive suicidality and romanticization of death were ever present. She spoke often of the simplicity and relief of simply ceasing to exist. It has been well established that the risk for suicide is twice as high in patients with cancer compared to the general population, and my mother's history of bipolar disorder and alcoholism further compounded that risk.1 I honestly do not know why there was not a psychiatrist on her care team from the very beginning; her unmanaged bipolar disorder was cause enough to justify comanagement. I deeply regret not having advocated strongly for one from the beginning of her treatment. As her son and having recently become a new physician, I struggled to know how to help my mother. I tried to delicately toe the line between acting as my mother's advocate and protecting her from herself. In a patient as complicated as my mother, one with extensive comorbid psychiatric illness interspersed with episodes of acute delirium, the patient's history of previous preferences may be quite valuable. In my own fear of losing someone I loved, I lost track of what was truly important to her as a human being. The exigency of her attempted suicide blinded me to the otherwise valid intricacies of her longstanding values regarding her end-of-life care. Even amid the turmoil of her attempted suicide, the specter of her cancer never strayed far. Ultimately, she resigned herself to treatment, undergoing surgery, completing radiation, and receiving two cycles of chemotherapy. She tried to quit three times, each time her radiation oncologist and I encouraged her to continue. Despite her insistence that life was not worth living, she continued onward, driven more so by the fear of a painful death than by the desire for life itself. I was acutely aware of her existential angst. At the time, it felt like a festering wound that had been covered merely to spare the eyes of those looking on. I was starting my medicine residency at this point, and my burgeoning understanding of patient care only added to my disquiet. I found her plan of care to be hollow. If she truly did not want to be treated and only wanted to avoid suffering, did treatment have to be all or none? Couldn't her physical suffering be minimized while still respecting her autonomy in her right to choose how she should live and die? More disturbingly, if her desire to forego treatment wasn't sound, why wasn't her mental health being treated more aggressively? I could not put these worries to words, and only with the clarity afforded by time can I now explain what exactly troubled me as new physician, let alone as her son. The hollowness I felt in her care could not be directed toward her care team, as they provided the standard of care. Her surgeon performed excellently in the operating room, her medical oncologist prescribed appropriate chemotherapy, and her radiation oncologist delivered her radiation with precision. Equally, my mother participated in her care as much as her mental health allowed her to. The health system, however, failed her. It felt as though she received her care piecemeal from each specialist, rather than visiting with members of a unified team. Where there should have been collaboration between oncology and psychiatry, there was fragmentation. Early integration of psychiatric care would likely have had tremendous impact on the last year of her life. Cancer does not afford us the time to treat our patient's diseases sequentially; her mental health had proven to be as great of a threat to her life as her malignancy. Although distress screening and integrated psychosocial treatment are standards of care set by the Commission on Cancer, access to mental health care is still woefully inadequate in many parts of the United States.2 As oncologists, we will inevitably treat patients with mental illness, addiction, or both. Assessment of and intervention on our patient's mental well-being should be given as much priority during our visits as investigating a new anemia or peripheral neuropathy. When there is not a collaborative care model to fall back on, it is imperative that clinicians strive to ensure that patients receive the resources they need. Despite it all, despite the arguing, the pleading, the crying, the pain, the suffering, despite completing her therapy as prescribed, her cancer continued to grow and surrounded her airway. She entered home hospice and struggled along for a few more weeks. She called me one morning after another sleepless night, gasping for air, and told me, once again, that she was ready to die. I had learned to ignore those words, alarm fatigue blunting their emotional impact, but this time there was something different in the way she spoke. She was neither groping for consolation nor lost in the trance-like depths of her grief. Her voice was calm and determined, strength drawn from the finality of her decision. She did not need to fight anymore; the imminence of her death was now inevitable. It was the most peaceful she had ever been in my adult life. Six days later, after she stopped putting food or water into her feeding tube, she finally found the relief she had so long desired. It has taken these 4 years to realize that my desire for what could be obscured my ability to see what was. More than anything, I wanted to spare her from what I saw as avoidable suffering, but I had also seen an opportunity. She would have needed to be sober for chemo, or risk toxicities above and beyond what was already expected. I let my emotional needs drive how I advised her. I wanted her to be treated because I was too afraid to accept her mortality, and too hopeful that this could be the start of sobriety. In the moment, I told myself that she could not truly want to forsake a future that still held so much potential, that she could not truly be willing to abandon her family. At first, I looked back upon my actions with cold acceptance, telling myself that her untreated mental illness was clouding her judgment. I felt justified in pushing her to continue with treatment in what I saw as my duty to care for her. The steadfastness of my conclusions softened into ambivalence the more I reflected. Through my supposedly benevolent interjection in her life, did I inadvertently cause her more suffering in my attempt to avoid it? Now, I am no longer certain I would have pushed as hard or for as long as I did, or perhaps have even pushed her at all. Dr. Lidia Schapira: Welcome to JCO's Cancer Stories: The Art of Oncology, brought to you by the ASCO Podcast Network, a collection of nine programs covering a range of educational and scientific content, and offering enriching insight into the world of cancer care. You can find all of the shows, including this one at podcast.asco.org. I'm your host, Lidia Schapira, Associate Editor for Art of Oncology and a Professor of Medicine at Stanford. My guest today is Dr. Colt Williams, a fellow in medical oncology and ethics at Mayo Clinic. He will be discussing his Art of Oncology article, 'My Mother's Last Lesson.' Our guest has no disclosures. Colt, welcome to our podcast. Dr. Colt Williams: Dr. Shapiro, thank you so much for having me today. Dr. Lidia Schapira: It is my pleasure. I'd like to start by asking you what you are currently reading, or what you have recently read that you would recommend to our listeners. I suspect that most people who love to write are also avid readers. Am I right? Dr. Colt Williams: You are very right. I actually love science fiction. And I recently picked up Ender's Game - I had never read it despite the media attention it got a few years ago when the movie came out. And boy, it is just as good as I hoped it would be. Dr. Lidia Schapira: That's fantastic. I'm glad you enjoy it. Let's talk a little bit about your essay. It is very, very personal and very moving. The strong message I took from your essay was how important it is to support caregivers, and how important it is to recognize and attend to mental health during cancer treatment. Tell us a little bit about what led you to write and share this very personal moving story. Dr. Colt Williams: My family life growing up was very private. And both when my father initially had cancer in 2009, and then when my mother fell ill in 2017, the culture within my family was very isolating. And I found myself left without much support for myself as a caregiver to my mother. And equally for both my parents, when they were going through cancer treatment had in a way kept them from being able to experience a lot of the help that they needed for both of them. Reflecting back as I grew through my medical training, and became a resident and then a fellow. As I became my mother's primary caregiver, I saw the damage that that had played both for her and for myself. And in reflecting on this, I had always felt that there was something that wasn't quite right with how things had played out with my mother's death. And I really wanted to be able to put to words for my own healing more than anything else, a way to find closure from my experiences. Dr. Lidia Schapira: Let's talk a little bit about the process and the motivation to write as a way to express yourself to achieve some clarity, as you say, to bring closure. How did you get started? And how long did it take you to write this piece? Dr. Colt Williams: Getting started was the hardest part. I initially wrote a very early version of this in medical school when my mother was first diagnosed with cancer as a case report for how we may approach our patients with comorbid mental illness and physical illness. And that first case report changed many numbers of times in the ensuing four years that it took, or five years, actually, until its final form. I started working on it in earnest again, after shelving it about a year ago. It took a solid year of coming back to the piece a few times a month, looking at wording, looking at the way I was writing to really make sure that the message I was wanting to convey was clear because I felt there was so much that I want to explore both of myself, and so much I wanted to share about my experience. But I also knew that I needed to distill down my experience into a few key points that would, one, really resonate with myself in terms of what were the issues that kept me from feeling that I had the closure that I so desired, but two, how can I make this a digestible piece for my audience. And writing has always been something I've enjoyed. I've enjoyed writing poetry. I've enjoyed reading. And for me being able to put pen to paper to help catharsis some of my thoughts has always been very useful for me. Dr. Lidia Schapira: So, did it work? Did this piece give you what you hoped it would give you? Dr. Colt Williams: It did in a bittersweet way. It was very hard sometimes to sit down and really think about some of these harder moments that I shared with my mother and to go back and relive them but in taking the time to very thoughtfully relive what were traumatic experiences for me, I was able to examine them now with the benefit of time, in a way that I couldn't because of my emotional clouding at the time for how intense the emotions were. And so, writing did provide me with a lot of closure. Dr. Lidia Schapira: Sometimes it takes many years to be able to write about something that is emotionally resonant. It's taken me about 20 years to be able to write about a patient that I love dearly who's died, so I totally understand. But what about the other piece that is sharing these very personal thoughts with a broader audience, especially since you're sort of still in training. Dr. Colt Williams: I remember coming away after my mother had died, and we had her cremated and we had finished with our small ceremony for her thinking that the experiences I had had with her mental illness, with her alcoholism, with the attempted suicide, all of this during training were all things that seemed that, at first glance, I may not want to share. This complicates things. I don't want my residency program director to know what's going through or my potential fellowship matches to know the troubles that I've been going through. While I was doing well with things, I felt that there was a lot that not only I could learn, but that could be really helpful for others. Case in point, with how isolating things felt, I felt this need to connect with other people through my experience. And I felt like the conclusions that I had arrived at really coming to terms with the fact that I was and am ambivalent about my actions with how I pushed my mother to receive her care was something that other people could relate to, and that someone else could learn from. And I hoped that I was able to maybe shorten the period from writing, from point A to point B in that process for someone else, through reading about my own experiences. Dr. Lidia Schapira: How has this experience, Colt, informed your work? I can't help but comment on the fact that you're doing a fellowship, not only in oncology but in ethics. Dr. Colt Williams: Extraordinarily informative. I think about my mother often when I see my patients, for better or worse. I can't help but project sometimes with some of my patients, but it gives me a reason to pause and to be patient, whereas maybe some other colleagues may be less tolerant of individuals who are non-adherent with their medication regimen or decided to end their radiation treatments early because of side effects despite the clear risk to their health in doing so. I feel that I can approach patients who can be more complex and may be more nuanced in a way that I can provide them with the grace and with the space that they need to be individuals, even if that does not necessarily line up with what we as their physicians know to be best for their physical health, knowing that not everyone can abide by the restraining needs of cancer treatment. And by extension, with my interest in ethics, there were a lot of things that I saw both in the way that my mother interacted with her physicians, the ways that she was able to push them, the ways that she was able to make them uncomfortable, made me think a lot about how ought we care for patients like this? And who are we as physicians in the roles of our patients' lives? What role are we playing for them? And how should we exert the very clear power that we have and the important role that we have in a way to make sure that we're always acting in our patient's best interests? Dr. Lidia Schapira: That sounds amazing, actually. Can you give me and share with our listeners an example of how your own experience as a caregiver and as a witness to your mother's complicated history, as you talk about her romanticizing deaths, and really being prepared to die, almost from the time she was diagnosed, how that has perhaps impacted your clinical care? Dr. Colt Williams: I can think of a few patients I've seen recently who have come to me after learning that they have metastatic cancer at their time of presentation, very openly discussing forgoing treatment in its entirety, despite there being options proven to not only prolong their overall survival but their quality of life. And I feel that, even within my group, there are some providers that would really, really push strongly for those patients to consider those treatments without taking the time to consider why: why are you approaching your treatment like this? Why are you approaching your disease like this? What is it that makes you think that this is the right way? And I say think not to imply that they think it's wrong or to think that they are thinking wrong, but to truly understand where they're coming from as an individual and as human beings. We all have extraordinarily unique experiences that lead us to become the people that we are. And all those experiences are valid, and simply because my understanding of how I believe I can best take care of you doesn't line up with what your experiences are, does not mean that your goals for your own life are any less valid than what I think you ought to be doing. So, I think at the end of the day, I'm willing to have a conversation more often with my patients. I'm willing to get myself into places that might be both uncomfortable for me as the provider, and uncomfortable with the patient if they're willing to meet me there on common ground, so we can really find what is going to be for them as human beings the best treatment path moving forward - treatment or not. Dr. Lidia Schapira: It's wonderful to hear you and one of the themes that I hear in your approach is that you find medicine not only rewarding but really mission-driven. And part of the mission is to get to know the person who has the disease. I found your essay very powerful because it addressed so many different issues that make caregiving and giving of professional care so complex. One is the idea of a whole person perspective worldview, as you've just explained to us the idea that we want to listen to and help patients tell us what matters to them, and help them live their journey according to their own values and aspirations. But the other is the issue here of the sadness that emerges from your essay. The fact that your mother was ready to accept the sadness and the finality of death. The fact that it was complicated by her lifelong addiction and history of alcoholism, as you say, the deafening silence of your father's absence in her life. And perhaps what she felt she wanted to do for her children whom I am pretty sure you don't say it, but I'm sure she loved dearly. How did you manage to put all of this into the essay? It certainly impressed this reader, but how did you make that decision to include all of these different threads into your narrative? Dr. Colt Williams: It felt dis-genuine to not include them. And how I managed to do it, I think is a mystery to me as well, to be completely honest. The sadness, the pain, so many compromises with her, so many times where I worried about her, so many times where I could think to myself, if only things were a little bit different, if only she could see things and the way that I see things, that was such an integral part of my experience, and through the pain of not being able to have the person that brought you into this world see the value in their own life was really the impetus that led me to the conclusions I'm now able to draw about recognizing her own values and individual. And while I will always intrinsically see her as my mother, and for all the things that a mother means, before she was my mother, she was still her own person. And those beliefs preceded me. And while any child, I think, would want to think that they are the center of their parent's life, sometimes you're not. Dr. Lidia Schapira: In your essay, you share with the readers that you feel that she found her peace before she died. Have you made your peace with her death? Dr. Colt Williams: I think I have now. I struggled with it for a long time. I struggled with whether I did the right thing by encouraging her to seek treatment when she didn't want to. I struggled with whether I should have pushed harder. I fought with myself on both sides of the coin, which way I should have gone playing out the 'ifs'. What if I would have done this? What if I wouldn't have done this? How things could have been different. But in the end, it's the truth that when I spent my last few days with her, it truly was the most peaceful I had ever seen her in my life. That te restlessness that could be felt within her, even before she was ill, was gone. She was finally complete in a way. She, in her mind, had completed her mission. I was in medical school. I was successful. My sister's a lawyer. She's doing well. Her children were grown and taken care of. And she could finally be free of what she felt like were fetters holding her down to a horrible existence. And I think the experience of being able to be present with her and to place myself in her shoes, as best I could, was really enlightening. And I think my last week with her while she was at home dying was the most formative event of my life. Dr. Lidia Schapira: I've never seen you with patients, but I suspect that you're very sensitive to the plight and situation of caregivers. Can you tell me a little bit about that? Dr. Colt Williams: Cancer is a disease that affects not only the patient but the entire family. It takes many people to take care of our patients, from the physicians to the nurses to our pharmacists to our CNAs that are in the hospital, but equally, we see them for an hour, if we're lucky every three weeks, and our patients' family members or their caregivers are with them the other 24 hours a day and the other times, they're always there. And if it wasn't for their caregivers, our patients certainly would not be doing as well as they are. Cancer is not just a disease that affects the organs, but it's also a disease of existential angst. It's a disease that affects our understanding of what it means to be human, of what it means to have a limited time on this earth, to be mortal beings. And those are things that we often as a species avoid encountering until we absolutely have to. As I saw myself, trying to handle this in isolation does not bode well. We are a social people and we rely on our caregivers and our family extraordinarily heavily. And it's just as important to make sure that our patients' families are set up for success if we want our patients to succeed, as it is to make sure that we've dosed our chemotherapy appropriately or provided the appropriate antiemetics before infusion. Dr. Lidia Schapira: Listening to you talk convinces me that you have found your path in onc, and in ethics, and perhaps moral philosophy as well. It's wonderful to hear you reflect. I thank you very much for sending us your work and wish you much success in your career both as an oncologist and ethicist. Dr. Colt Williams: Thank you, Dr. Schapira, for having me. It's been an absolute pleasure to speak with you. Dr. Lidia Schapira: Until next time, thank you for listening to this JCO's Cancer Stories: The Art of Oncology podcast. If you enjoyed what you heard today, don't forget to give us a rating or review on Apple podcasts or wherever you listen. While you're there, be sure to subscribe so you never miss an episode of JCO's Cancer Stories: The Art of Oncology podcast. This is just one of many of ASCO's podcasts. You can find all of the shows at podcast.asco.org. The purpose of this podcast is to educate and 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.
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Jul 5, 2022 • 22min

To the Cadaver With the Port

"To the Cadaver With the Port," by Kendahl Servino: A medical student begins school in the midst of a pandemic, but also, in the middle of cancer treatment. TRANSCRIPT Narrator: "To the Cadaver with the Port" by Kendahl Servino, B.S. (10.1200/JCO.21.01979) It was easy to spot the cadaver's port implanted in her chest. The small, triangular object stood out against the pallor of her skin, preserved in the same manner as the rest of the bodies in the anatomy laboratory. As first-year medical students, we met our very first patients here. A quiet veneration was interlaced in the air amid the formaldehyde, and it clung to us the first day we stepped into the anatomy laboratory. It was easy to spot the cadaver's port implanted in her chest. The small, triangular object stood out against the pallor of her skin, preserved in the same manner as the rest of the bodies in the anatomy laboratory. As first-year medical students, we met our very first patients here. A quiet veneration was interlaced in the air amid the formaldehyde, and it clung to us the first day we stepped in the anatomy laboratory; we recognized the privilege given to us to learn about life and death through the human body in such a personal manner. Yet amid the reverence, I mourned this cadaver in particular, because the small port was a device used to administer chemotherapy. Easily overlooked by one unfamiliar with its purpose, it was a telling sign of cancer. It was the same port that I had in my own chest. In the midst of a busy anatomy laboratory session that day, I was immediately taken back to a different day 9 months ago. During the winter break of my last year of college, I drove myself to the hospital for a seemingly innocuous visit and walked out with a cancer diagnosis, unable to fathom what had just happened. Graduating college, celebrating with friends, and starting my career in medical school had been the milestones of my foreseeable future; finishing chemotherapy, ringing the bell at the end of treatment—a monumental moment for many patients—and surviving cancer had not been among them. I never expected to grapple with my mortality at 20 years old. As I stared at the cadaver's port, I wondered: was she with anyone when she was told she had cancer, or had she been alone, like me? Had she been devastated upon learning of her diagnosis, overcome by shock as I had? What kind of care did she receive thereafter? Did she have faith in herself? Had she felt hurt, searching in vain for an explanation of why she had been dealt such desolate cards? Did she feel betrayed by her own body, as I had? Moments of my own experience flooded back as I stood by her lifeless side. Looking at her face, still as though she were asleep, I wondered if she asked herself the same questions that I could never find the answers to myself. Even if every other aspect of our life stories were different, I knew at the very least that this cadaver and I shared the burden of a shattering diagnosis. I suspected that we shared the weight of the concomitant struggles that quickly follow the words, "You have cancer." Having spent the past year receiving chemotherapy and radiation, losing my hair, and most importantly, struggling with the overlooked, psychologic side effects of cancer, never in my life had I felt so lost. I wondered whether the cadaver with the port had felt this way too. At times, it has been hard for me to heal while in the medical school, an environment that often reminds me, although unintentionally, of the trauma that cancer precipitated. When I observe the skillful hands of the attending physician as she instructs how to conduct a proper breast examination, I am pulled back to the memory of stumbling out of the women's health clinic in a trance, numbed by what I had just been told. During lectures taught by brilliant professors on chemotherapeutic agents, I cannot help but recall the memory of sitting in the infusion center watching those very drugs dangling from the intravenous pole drip inside me. During a charged class debate on the efficacy of self-breast examinations, I struggle to sequester the unsettling feeling that arises in my stomach as I am prompted to revisit the emotional burdens of what I endured. And soon, when my classmates and I learn how to deliver hard news to patients, such as a diagnosis of cancer, I will be reminded of what it felt like sitting in my patient's chair. As I stand at the intersection between the medical student and the patient with cancer, I am learning that studying a disease, understanding its pathophysiology and mechanisms behind the indicated treatment, is entirely different from being on the receiving end of those medications or being the recipient of the diagnosis. Because of my dual identity, I am slowly understanding what it fully means to empathize with patients' situations. As I felt connected to the cadaver, I realized so too would I see myself in my future patients' struggles. Despite the burdens that I am currently working through, my experience with cancer has provided me something to offer to others, something that has, and will continue, to connect me to others. For the first time since starting the medical school, I am beginning to see a future not clouded by trauma, but instead filled with the potential for impactful connections and beautiful moments. If nothing else, I write this as a thank you to the cadaver with the port. Thank you for teaching me about life through your death, and for reminding me that there is so much of mine left to live. Thank you for reminding me that there have been others who have shared my struggles and that our pain does not exist in a vacuum. Healing, I realize, is not linear. But the power of shared experiences can help heal wounds, including those that lie deep within us. These moments are found not in textbooks or in lectures, but instead between two individuals when all other differences are cast aside. And while my patients may thank me one day for changing their lives, I will have to thank them for changing mine. Dr. Lidia Schapira: Welcome to JCO's Cancer Stories: The Art of Oncology, brought to you by the ASCO Podcast Network, a collection of nine programs covering a range of educational and scientific content, and offering enriching insight into the world of cancer care. You can find all of the shows, including this one at podcast.asco.org. I'm Lidia Schapira, professor of Medicine at Stanford, associate editor for JCOs Art of Oncology, and your host for this program. With me today is Kendahl Servino. Kendahl is a second-year student at the Reno School of Medicine and the author of, 'To the Cadaver with the Port'. Our guest has no disclosures. Welcome to the program, Kendahl. Kendahl Servino: Thank you, Dr. Schapira. It's great to be here today. Dr. Lidia Schapira: So, before we start, I like to ask our authors to tell me a little bit about their process for writing, and first of all, what they enjoy reading. So, what would I find on your virtual night table today? Kendahl Servino: I've always been a writer. When I think about my childhood, it's comprised a lot about many trips to the public library. My parents encouraged my brothers and me to read from a young age and I have just a plethora of memories of going to the library after school. And on summer vacations, we would just spend our free time there. Books were just a great way to experience other lives vicariously and to really see different perspectives. My love for reading translated into my own interest for writing. As a child, I have memories as early as kindergarten of me writing. I would take those standard 8 by 10 computer pieces of paper, I would take a stack of them, I would fold it in half. And I would staple it along its spine. And I'd create essentially a little book. I think the first book that I ever wrote was in kindergarten, and it was about this talking rose on a farm. And there was this whole rivalry and it was very vivid in the imagination of a six-year-old. But writing has always just been a part of my life, and especially coping with cancer became a lot more meaningful and impactful to my life. Dr. Lidia Schapira: So, writers are usually readers as well. So, I'll go back to my initial question. Also, what books are you reading now? Or what book would you recommend to our listeners that you've read in the last year or so if you've had time to read as a medical student? Kendahl Servino: Time is definitely limited. But currently, I'm reading a book called, A Little Life, by Hanya Yanagihara. I'm not sure if I pronounced your name correctly. And I'm not sure if you've heard of this book, either. It's a pretty big book, I think it's 800 or so pages. But it's about these four men who met in college, and they are currently living in New York and they're struggling with the transition into adulthood. They're dealing with a lot of issues. It's not for the faint of heart, I would say because there are a lot of trigger warnings in this book. They deal with a lot of issues such as self-harm, eating disorders, and mental health. There's all a lot of issues that they cover, but you get really close and connected with the characters and you feel a sense of bond with them by the end of the story. I don't want to give too much away about these characters' storylines, but it's a very impactful book so far that I would recommend. Dr. Lidia Schapira: So, it's interesting to hear you talk about this book that you admire, and that touched you because your essay had the same effect on the readers and certainly on me. It starts with this amazing line. I want you to tell us a little bit about that experience that you had as a very young cancer survivor, choosing to attend med school walking into the anatomy lab, and then seeing this device that you recognize on your cadaver's chest wall as a port, and that amazing way that you phrase the fact that you immediately felt this connection to this cadaver, bring us to that day. Kendahl Servino: Yeah. So, I'll start with a little background. So, starting medical school, I was in the middle of cancer treatment. Actually, right before I started medical school, I just finished radiation therapy. And within a couple of days after finishing and leaving my radiation oncologist's clinic, I moved to Reno, I was living in Las Vegas originally. So, all of this was still pretty fresh. And, admittedly, I mean, it still is right now. It's been about a year since I finished treatment. But the height of treatment was when I started medical school. And so, everything was still really heightened emotions at the time. And upon seeing that cadaver with the port, it was really surprising to me, because even though I had finished chemotherapy myself, and I had been about three or four months out from finishing chemotherapy, my hair was finally starting to grow back at that time, I think seeing that cadaver with a port showed me that cancer is never really over. That's something that I've been learning. And so, you think about ringing the bell. For those who aren't familiar, there's this bell that's often in many cancer clinics. It's this giant bell on the wall that you get to ring when you finish treatment. It's a really impactful moment, for not only the patient who's ringing the bell, but also everyone else in the clinic who can hear and understand the struggle of what the patient went through, and it's a collective celebration and something really special for cancer patients. So, you think about that as being kind of the end all to finishing cancer treatment. But what I've been learning since finishing treatment on my own and since being in medical school is that cancer treatment or cancer itself, and any other monumental diagnosis like this does not really have a finite ending. It'll always carry and stay with you, for better or for worse. I think that reminder of seeing the port, and seeing that connection reminded me that I will always have this part of me, this has changed me even a couple of months out from chemotherapy, or even a decade into my own future practice as a physician. And this will be an experience that will always stay with me and hopefully connect me more with patients in the future as I felt connected to the cadaver. Dr. Lidia Schapira: In your essay, you reflect on the psychological side and the psychological suffering that accompanies that cancer journey and the diagnosis and you also talk a lot about connection as something that you find very important in thinking about your future as a physician. Can you tell us a little bit about the emotional process and the healing that's taking place now even? Also, if you can, can you reflect a little bit on sort of your dual identity as a cancer survivor now and medical student, and whether or not it's really problematic for you? Kendahl Servino: Some of the psychological effects were a lot more monumental, I would say a year ago from now when I started medical school. Medical school is a very challenging transition for anyone undertaking this experience. And I definitely had struggles adjusting to medical school, but I think as a cancer patient, on top of that, I faced a lot of unique challenges. I think that had a lot of impact on mental health. For example, I was wearing a wig at the time. I was bald. So, that was really hard on top of moving to medical school. And, of course, in the midst of a pandemic, on top of everything else. Things were hard for everyone at the time but being a cancer patient posed some unique challenges for me, amongst my classmates. And so, you asked about the dual identity between cancer patient and medical student, and you asked about whether it's problematic. And admittedly, at the beginning of medical school, I think I really struggled with learning about, say, the chemotherapeutic agents that we'd receive lectures on, learning about how to conduct a proper breast exam. And those were very triggering for me, having just experienced that so recently, and so sometimes I thought that the trauma that I was reminded of so frequently, but unintentionally, in medical school was a lot for me, and something that I have been working through and I'm thankful to say now that a year later, I'm no longer as triggered by these moments in school, although they still come and go. But I think seeing the flip side of what it is like from the patient's point of view and the provider's point of view is really insightful because as medical students, we're learning to become providers and our role is to offer care to our future patients. And as a cancer patient myself, I've had unique insight into what it's like sitting in the patient's chair, being a patient with more medical needs than most. So, in some ways that dual identity has proffered really great insight into what my patients might be experiencing and feeling. But on the other hand, it also precipitates a lot of emotion, sometimes strongly that I am not ready to face again, or would want to be reminded of. Dr. Lidia Schapira: As you speak, Kendahl, it occurs to me that you probably need to sort of make a decision about how much you want to share about your personal circumstances, very often with your professors, with your classmates, even with your patients. How do you manage that? Kendahl Servino: Truthfully, I'm still trying to figure out the balance too, between oversharing and wanting to share, because I think that I have a lot to offer, the way that anyone who has overcome challenges can share something with others. As far as my future practice, and you mentioned future patients, I think that's something that I would like to connect with my future patients about in a way that is understanding of their own circumstances and whatever it is that my patients are going through with the intention of letting them know that I can understand to an extent of what they're experiencing, what they're going through, and I'd hope to convey that I will do all that I can, in my own future practice to help them and to help them heal. Dr. Lidia Schapira: Back to you, has your medical school, and do your professors and classmates support you in the way that you need to be supported? Are they there for you on a bad day? Kendahl Servino: I would say so. I don't have too many bad days, thankfully, as I did before medical school. I would say that the semester before medical school, which was the semester that I was in chemotherapy, I think that was my absolute lowest. And so, being in medical school, I haven't experienced that, thankfully, but I do have my support system here. I'm really thankful for them. I have been pretty public about my experience. Also, I created a blog a couple of years ago that I started out in college to convey my experiences as a college student and going through the formative time that college brings. But during cancer treatment, I also used that as a coping mechanism. Going back to writing has been part of my roots. I blogged a lot about my experiences. And now on social media, I post about some of my experiences. I try not to post just about the accomplishments, I also like to share, to an extent, the challenges also and the hard times, because I'd like to stay true to the authentic experience that cancer was and it wasn't just ringing the bell. It wasn't just accomplishing these milestones. It was also about my lowest times and the times that I wasn't sure I'd get through it. And so, I like to share all of that, and I try to be as authentic and genuine about my experience. Dr. Lidia Schapira: Well, I hope the process of writing this essay that you sent to JCO was helpful and was therapeutic for you as well. And coming back to your writing, which is beautiful, it's crisp, it's clearly very intentional, what is the message for the readers of JCO? Kendahl Servino: Thank you! I would say that cancer was, inarguably, the most challenging thing I've ever experienced in my life, bar none. And I would never want to go through something like that again and I would never wish that upon anyone else either. But I do believe now that it will help me in becoming the best doctor that I can be one day in my future practice. I think that's the most that I can ask for from an experience like cancer and the most that I hope to bring out of it is the impact that I can give to my future patients. Dr. Lidia Schapira: Beautifully said. So, I'm just curious, do you know what path you'll follow in medicine? Do you have an idea of what kind of doctor you want to be? I know a good one and one that connects with her patients, but do you have any idea of where you're headed? Kendahl Servino: Yeah, I currently do have interests in something oncology-related. I'm not sure at the moment whether that will be the medicinal route or the surgical route. I got to know both sides of the spectrum through my oncologist, but I also got to know my plastic surgeon who was on my team as well. And I have interests on both sides of the spectrum. But I think something related to oncology would be really fulfilling and impactful to my career and hopefully be able to change the lives of patients going through something that I've experienced so personally. Dr. Lidia Schapira: Well, hold on to that feeling. Thank you so much for writing. I wish you good health. And I hope you do join the global cancer tribe in some capacity. It was lovely to get to chat with you, Kendahl, and to read and reread and reread your essay. Thank you very much! Kendahl Servino: Thank you so much. It was great being here and I appreciate you inviting me. Dr. Lidia Schapira: Until next time, thank you for listening to this JCO's Cancer Stories: The Art of Oncology podcast. If you enjoyed what you heard today, don't forget to give us a rating or review on Apple podcasts or wherever you listen. While you're there, be sure to subscribe so you never miss an episode of JCO's Cancer Stories: The Art of Oncology Podcast. This is just one of many of ASCO's podcasts. You can find all of the shows at podcast.asco.org. 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.
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Jun 28, 2022 • 36min

My White Coat Doesn't Fit

"My White Coat Doesn't Fit" by Narjust Florez (Duma): a medical oncologist shares her story about exclusion, depression and finding her way in oncology as a Latina in medicine and oncology. TRANSCRIPT Narrator: My White Coat Doesn't Fit, by Narjust Duma, MD (10.1200/JCO.21.02601) There I was, crying once again all the way from the hospital's parking lot to my apartment, into the shower, and while trying to fall asleep. This had become the norm during my internal medicine residency. For years, I tried hard every day to be someone else in order to fit in. It started with off-hand comments like "Look at her red shoes," "You are so colorful," and "You are so Latina." These later escalated to being interrupted during presentations with comments about my accent, being told that my medical school training in my home country was inferior to my US colleagues, and being assigned all Spanish-speaking patients because "They are your people." Some of those comments and interactions were unintentionally harmful but led to feelings of isolation, and over time, I began to feel like an outsider. I came to the United States with the dream of becoming a physician investigator, leaving behind family, friends, and everything I knew. Over time, I felt pigeonholed into a constricting stereotype due to my ethnicity and accent. Back home, I was one of many, but in this new setting, I was one of a few, and in many instances, I was the only Latina in the room. I was raised by divorced physician parents in Venezuela; my childhood years were often spent in the clinic waiting for my mother to see that one last patient or outside the operating room waiting for my father to take me home. The hospital felt like my second home, growing up snacking on Graham crackers and drinking the infamous hospital's 1% orange juice. "She was raised in a hospital," my mother used to say. Sadly, that feeling of being at home in the hospital changed during medical training as I felt isolated and like I did not belong, making me question my dream and the decision to come to the United States. I remember calling my family and crying as I asked "Why did I leave?" "Why didn't you stop me from coming here?" and seeking permission to return home. I felt like I was disappointing them as I was no longer the vivid, confident young woman who left her home country to pursue a bright future. I remember one colleague, Valerie (pseudonym), from Connecticut. Valerie attended medical school in the United States, did not have an accent, and was familiar with the American health care system. She understood how the senior resident-intern relationship functioned, a hierarchy that continually confused me. Over the following weeks, I took a closer look at how my colleagues and other hospital staff interacted with Valerie. I noticed that people did not comment about her clothing or personality. She was "normal" and fit in. I remember my senior resident asking me, "Narjust, why can't you be more like Valerie?" Ashamed, I mumbled that I would try and then ran to the bathroom to cry alone. That interaction was a turning point for me; I got the message. I needed to change; I needed to stop being who I was to be accepted. As the years passed, I kept key pieces of my personality hidden, hoping I could earn the respect of my colleagues. I refrained from sharing my personal stories as they were different from those around me. I grew up in a developing country with a struggling economy and an even more challenging political situation. It was clear that we simply did not share similar experiences. When I sought help from my senior residents and attending physicians, my feelings were often minimized or invalidated. I was told that "residency is tough" and that I should "man up." A few even suggested that I mold my personality to fit the box of what a resident physician was supposed to be. I slowly realized that my clothing changed from reds and pinks to greys and blacks because it was "more professional"; my outward appearance faded, as did my once bright sense of humor and affability. All these issues led to depression and an overwhelming sense of not belonging. A few months later, I was on antidepressants, but the crying in the shower continued. Rotation by rotation, I looked for a specialty that would help me feel like I belonged, and I found that in oncology. My mentor embraced my research ideas; my ethnic background or accent did not matter; we had the same goal, improving the care of our patients with cancer. I got to travel to national and international conferences, presented my research findings, and received a few awards along the way. From the outside, it looked like I was thriving; my mentor often called me a "Rising Star," but in reality, I was still deeply depressed and trying to fit in every day. My career successes led me to believe that not being myself was the right thing to do. I felt isolated; I was trying to be someone I was not. A year later, I matched at my top choice oncology fellowship program; the program had the balance I was looking for between clinical care and research. This meant that I needed to move to the Midwest, further away from family, and to an area of the country with less racial and ethnic diversity. After 2 years on antidepressants and the 10 extra pounds that came with it, my white coat did not fit. My white coat felt like a costume that I would put on every day to fulfill the dream of being a doctor. I would often wake up in the middle of the night exhausted and depressed. I had all the responsibilities of a hematology/ oncology trainee and the additional full-time job of trying to fit in every day; I was using all my energy trying to be someone I was not. Regardless of my fears, I felt in my element when talking to patients and interacting with my cofellows. Despite having a different skin color and accent, I felt accepted by my patients with cancer. I remember when one of my patients requested to see me while in the emergency room because "Dr Duma just gets me." She had been evaluated by the head of the department and attending physicians, but for her, I washer doctor. Tears of happiness accompanied my bus ride to see her; at that moment, I knew I was an oncologist, and oncology was the place I belonged. The next day, I realized that it was time to be myself: Narjust from Venezuela, a Latina oncologist who was her true self. I searched the bottom of my closet for the last piece of colorful clothing I had saved, a yellow dress. I put on that brightly colored dress for the first time in 5 years and finally felt comfortable being my authentic self; the yellow dress represented freedom and embraced the culture and colors I grew up seeing in my hometown. I finally understood that I brought something special to the table: my unique understanding of the challenges faced by Latinx patients and trainees, my advocacy skills, and my persistence to endure the academic grindstone. Psychotherapy was also an essential part of my recovery; I learned that happiness lived within me as a whole person—hiding my accent, cultural background, and past experiences was also hiding the light and joy inside me. Along the way, I found colleagues who faced the same challenges and validated that my experiences resulted from an environment that excludes the difference and values homogeneity. This route to self-discovery helped me find my calling to support others in situations similar to mine.3 I learned how to incorporate and celebrate my ethnicity in the world of academic oncology by teaching others the power of cultural humility, diversity, equity, and inclusion. Together with newfound friends and colleagues, I cofounded the #LatinasinMedicine Twitter community for those who face similar burdens during their training and careers. The #LatinasinMedicine community was created to share our stories, embrace our culture, and amplify other Latinas in medicine—to create connections that alleviate the sense of isolation that many of us have experienced and serve as role models to the next generation of Latinas in medicine. To help drive systemic change, I founded the Duma Laboratory, a research group that focuses on cancer health disparities and discrimination in medical education. Through research, the Duma Laboratory has shown that my experiences are not unique but rather an everyday reality for many international medical graduates and other under-represented groups in medicine. The Duma Laboratory has become a safe environment for many trainees; we seek to change how mentorship works for under-represented groups in oncology, with the hope that the isolation I felt during my training is not something that future physicians will ever have to endure. After years of depression and self-discovery, my white coat now fits. However, this is not your regular white coat; it has touches of color to embrace my heritage and the ancestors who paved the way for me to be here today. The face of medicine and oncology is changing around the world; young women of color are standing up to demonstrate the strength of our experiences and fuel the change that medical education needs. For all minority medical students, residents, fellows, and junior faculty, we belong in medicine even during those moments when our identity is tested. Through my journey, I learned that we can and must challenge the status quo. I hope to inspire others to join me in this path of advocating for diversity, equity, and inclusion because the time for change is now. I was finally free the moment I realized I could not be anyone else but myself, a proud Latina in medicine and oncology. Dr. Lidia Schapira: Welcome to JCO's Cancer Stories: The Art of Oncology, brought to you by the ASCO Podcast Network, which offers a range of educational and scientific content and enriching insight into the world of cancer care. You can find all of the shows including this one at podcast.asco.org. I'm your host, Lidia Shapira, Associate Editor for Art of Oncology and Professor of Medicine at Stanford. And with me today is Dr. Narjust Duma, Associate Director of the Cancer Care Equity Program and Medical Thoracic Oncologist at Dana Farber and an Assistant Professor at Harvard Medical School. We'll be discussing her Art of Oncology article, 'My White Coat Doesn't Fit.' Our guest has a consulting or advisory role with AstraZeneca, Pfizer, NeoGenomics Laboratories, Janssen, Bristol Myers Squibb, Medarax, Merck, and Mirati. Our guest has also participated in a speaker's bureau for MJH Life Sciences. Narjust, welcome to our podcast. Dr. Narjust Duma: Thank you for the invitation and for letting us share our story. Dr. Lidia Schapira: It's lovely to have you. So, let's start with a bit of background. Your essay has so many powerful themes, the story of an immigrant in the US, the story of resilience, the story of aggression and bullying as a recipient of such during training, of overcoming this and finding not only meaning, but really being an advocate for a more inclusive and fair culture in the workplace. So, let's untangle all of these and start with your family. I was interested in reading that you're named after your two grandmothers, Narcisa and Justa. And this is how your parents, both physicians, Colombian and Dominican, gave you your name, and then you were raised in Venezuela. So, tell us a little bit about your family and the values that were passed on in your family. Dr. Narjust Duma: Thank you for asking. Having my two grandmothers names is something that my mother put a lot of effort into. She was a surgery resident with very limited time to decide to do that. And I don't have a middle name, which is quite unique in Latin America, most people in Latin America have one or two middle names. So, my mother did that to assure that I will use her piece of art, which is my first name. But little does she know that my grandmothers were going to be such an important part of my life, not only because they're in my name, but also because I am who I am thanks to them. So, the first part of my name, Narcisa was my grandma who raised me and she gave me the superpower of reading and disconnecting. So, I'm able to read no matter where I am and how loud it can be and disconnect with the world. So, it is often that my assistants need to knock on my door two or three times so, I don't like being scared because I'm able to travel away. That was also very unique because you will find me in the basketball games from high school or other activities with a book because I was able to block that noise. But it also makes very uncomfortable situations for my friends that find it embarrassing that I will pull a book in the basketball game. And as I grow, thanks to the influence of my grandmothers, I always have these, how can I say, mixed situation, in which they were very old school grandmothers with old school habits and values, and how I'm able to modify that. My grandma told me that you can be a feminist, but you still take care of your house. You can still, you know, cook. And that taught me that you don't have to pick a side, there is no one stereotype for one or another. Because as my mother being a single mother and a surgeon, my parents divorced early on, told me, 'Yes, I can be the doctor but I can also be the person that has more than a career that's able to have hobbies.' I love cooking, and when I'm stressed, I cook. So, I had a grant deadline a few weeks ago and I cooked so much that there was food for days. So, having the names of my grandmothers is very important because I have their values, but I have modified them to the current times. Dr. Lidia Schapira: Let me ask a little bit about reading. I often ask the guests of this podcast who have written and therefore I know enjoy reading and writing, what their favorite books are or what is currently on their night table. But I'm going to ask you a second question and that is what languages do you read in? Dr. Narjust Duma: I prefer to read in Spanish. I found that books in Spanish, even if it's a book that originated in English, have these romantic characteristics. And I often tell my editors, 'Just take into account that I think in Spanish, and write in English'. Because I grew up with Gabrielle Garcia Marquez, and when he describes a street, that's a page of the little things that he describes. So, that's how I write and that's how I read in a very romantic, elaborate way. The aspects of realistic imagism, which is my favorite genre in literature, and there are so many Latin American and South American writers that I don't think that I am going to run out. And when I run out, I reread the same books. I have read all of Gabrielle Garcia Marquez's books twice, and Borges, too. It's the type of stories that allows you to submerge yourself and you imagine yourself wearing those Victorian dresses in the heat of a Colombian street, as you try to understand if, you know, Love in the Time of Cholera, if they were more in love with being in love or what it was happening in the story. And that just gives me happiness on a Sunday morning. Dr. Lidia Schapira: That's beautiful. I must confess that reading Borges is not easy. So, I totally admire the fact that you have managed to read all of his work. And I think that you're absolutely right, that magical realism is a genre that is incredibly fresh, and perhaps for the work that we do in oncology, it's a wonderful antidote in a way to some of the realities, the very harsh realities that we deal with on a daily basis. So, let me ask you a little bit about growing up in Venezuela in the 80s, 90s, early aughts. That must have been difficult. Tell us a little bit about that, and your choice of attending medical school. Dr. Narjust Duma: So, growing up in Venezuela, with a Colombian mother, it was quite a unique perspective because she was very attached to her Colombian roots. So, a lot of the things that happened in the house were very Colombian, but I was in Venezuela. So, it was a unique characteristic of being from a country but your family is not from there. So, my parents are not from Venezuela, my grandparents either, and I'm Venezuelan because I was born and raised there. So, that brought a unique perspective, right? The music that I played in my house was Colombian music, not Venezuelan music. So, my family migrated from Colombia to Venezuela due to the challenges in the early 80s with violence and the Medellin, due to the drug cartels. So, we moved to Venezuela for a better future. And growing up in the first years, Venezuela was in a very good position. Oil was at the highest prices. Economically, the country was doing well. I remember, in my early years, the dollar and the bolivar had the same price. But then little by little I saw how my country deteriorated, and it was very heartbreaking. From a place where the shells were full of food to a place now when there is no food, and you go to the supermarket, and many of them are close. And now you're only limited to buying certain things. And you used to use your federal ID that has an electronic tracking on how much you can buy because of socialism. So, you're only allowed to buy two kilograms of rice per month, for example, you're only allowed to buy this number of plantains. So, every time I go home, because Venezuela is always going to be my home, it doesn't matter where I am., I see how my country has lost pieces by pieces, which is quite very hard because I had a very good childhood. I had a unique childhood because I was raised in hospitals. But I had a childhood in which I will play with my friends across the street. We were not worried about being kidnapped. We were not worried about being robbed. That's one thing that children in Venezuela cannot do right now. Children of doctors – there's a higher risk of being kidnapped as a kid right now if your father is a doctor or your mother. So, my childhood wasn't like that. When I teach my students or talk to my mentees, I'm often selling my country, and saying that's not what it used to be. That's not where I grew up. But every year I saw how it no longer is where I grew up. That place doesn't exist, and sometimes, Lidia, I feel like my imagination may have to fill it out with more good things. But I think it was a good childhood. It's just that nobody in Venezuela is experiencing what I experienced as a kid. Dr. Lidia Schapira: So, both parents were doctors and you chose to study medicine, was this just right out of high school? Dr. Narjust Duma: Even before high school, I found myself very connected to patients. So, since I turned 15, my father would give his secretary a month of vacation because that's the month that we fill in. So, I was the secretary for a month every summer since I was 15 until I was 20. That early exposure allowed me to like get to know these patients and they know I was the daughter, but I was also the secretary. So, I really cherished that. Growing up in my household, we're a house of service. So, our love language is acts of service. That's how pretty much my grandmas and my parents were. So, in order to be a physician, that's the ultimate act of service. I have wanted to be a doctor since I was 11. I think my mother face horrible gender harassment and sexual harassment as a female in the surgery in the early 80s, that she tried to push me away from medicine. Early on, when I was 11, or 12, being an oil engineer in Venezuela was the career that everybody should have, right? Like, people were going to the Emirates and moving to different parts of the world and were doing wonderful. So, my mother, based on her experience in the 80s, was pushing me away from it. She's like, 'You can do other things.' My father always stayed in the back and said, 'You can do what you want.' This is how our parents' experiences affect our future. If I wouldn't be this stubborn, I would probably be an oil engineer today, and I wouldn't be talking to you. Dr. Lidia Schapira: So, you went to medical school, and then after you graduated, what did you decide to do? Because when I look at what we know about the history there is I think you graduated in '09, and then the story that you write about sort of begins in '16 when you come to New Jersey to do training in the US, but what happened between '09 and '16? Dr. Narjust Duma: I started residency in 2013. '16 was my fellowship. So, going to medical school was one of the hardest decisions I made because right in 2003 and 2004 was a coup in Venezuela where part of the opposition took over the country for three days, and then the President of the time came back and the country really significantly destabilized after that coup. Most schools were closed. Entire private industries were closed for a month. And I think for some people, it's hard to understand what happened. Everything closed for a month, McDonald's was closed for a month. There was no Coke because a Coke company was not producing. Everything was closed. The country was just paralyzed. So, my mother and I, and my family, my father, took into account that we didn't know when medical school would resume in Venezuela. We didn't know if the schools would ever open again. I decided to apply for a scholarship and I left Venezuela at the age of 17 to go to the Dominican Republic for medical school. Very early on, I noticed that I was going to be a foreigner wherever I go because I left home. And since then, I think I became very resilient because I was 17 and I needed to move forward. So, that is what happened in 2004. I left everything I knew. I left for the Dominican. I do have family in the Dominican, but it was very hard because even if you speak the same language, the cultures are very different. And then I went to medical school in the Dominican and when I was in the Dominican Republic, I realized I really wanted to do science and be an advocate and focus on vulnerable populations with cancer. So, then I made the decision to come to the United States, I did a year of a research fellowship at Fred Hutchinson, and then I went to residency in 2013. Dr. Lidia Schapira: I see. And that's when you went to New Jersey, far away from home. And as you tell the story, the experience was awful, in part because of the unkindness and aggression, not only microaggression but outright bullying that you experienced. In reading the essay, my impression was that the bullying was mostly on two accounts. One was gender. The other was the fact that you were different. In this particular case, it was the ethnicity as a Latin or Hispanic woman. Tell us a little bit about that so we can understand that. Dr. Narjust Duma: I think what happened is that perfect example of intersectionality because we are now the result of one experience, we're the result of multiple identities. So many woman have faced gender inequalities in medicine, but when you are from a marginalized group, those inequalities multiply. I have an accent and clearly a different skin color. I grew up in a family in which you were encouraged to be your true self. My grandmothers and my mother said, 'You never want to be the quiet woman in the corner because the quiet woman never generates change.' That's what they said, and I bet there are some who do. But that intersection of my identities was very challenging because I was seen as inferior just for being a woman and then you multiply being one of the few Latinas you are seen like you are less just because you are - it doesn't matter how many degrees or papers or grants you had done and all, I was the most productive research resident in my residency for two years in a row - but I would still be judged by my identity and not what I have produced, or what I do on my patients' experiences, which were great – the feedback from my patients. It's just because I was the different one. Dr. Lidia Schapira: When I hear your story about your origins, it seems to me that you came from a very capable loving family, and they basically told you to go conquer the world, and you did. And then you arrive and you're a productive successful resident, and yet, you are marginalized, as you say. People are really aggressive. Now that you've had some years that have passed, if you think back, what advice would you give that young Narjust? Dr. Narjust Duma: My number one advice, would be that, I will tell myself is that I belong, in many instances, I feel like I didn't belong. It makes me question all the decisions to that day because when you're doing a presentation, and I still remember like today, and you're interrupted by someone, just for them to make a comment about your accent, it really brings everything down to your core, like, 'Is my presentation not accurate? Is the information not all right? And why am I here? Why did I left everything I love to be treated like this?' Dr. Lidia Schapira: Of course. So, from New Jersey, you write in your essay that you really discover your passion for cancer research, and you land in a fellowship with a mentor who is encouraging, and things begin to change for you. Can you tell us a little bit about that phase of your training in your life where you slowly begin to find your voice in the state, that also where you crash, where you find yourself so vulnerable that things really fall apart? Dr. Narjust Duma: So, when I was a resident, I didn't know exactly - I was interested in oncology, but I wasn't sure if it was for me. So, Dr. Martin Gutierrez at Rutgers in Hackensack is the person who I cold emailed and said, 'I'm interested in studying gastric cancer in Hispanic patients because I think that patients in the clinic are so young.' He, without knowing me or having any idea, he trusted me. We still meet. He still follows up with me. He encouraged me. I think him being a Latino made the experience better, too, because I didn't have to explain my experience to him. I didn't have to explain that. He understood because he went through the same things. And he's like, 'I got you. Let's follow what you want to do.' He embraced who I was, and how I put who I was into my research. And thanks to Dr. Gutierrez, I'm at the Mayo Clinic as an international medical grad. So, finding a place in which my ideas were embraced was very important to allow me to stay in medicine because, Lidia, I can tell you several times, I decided to leave. I was very committed to finding something else to do or just being a researcher and leaving clinical medicine behind. So, when I went to Mayo, I still followed with that mentor, but I already knew what I wanted to do. I wanted to do cancer health disparities. I wanted to do inclusion and diversity. And that allowed me to develop the career I have now and is having that pathway because I, with my strong personality and everything else, faced this discrimination, and I can imagine for other trainees that may still be facing that or will face that in the future. So, I use the negative aspects to find my calling and do many things I have done after that. Dr. Lidia Schapira: Speaks to your strengths and your determination. Let's talk a little bit about the people who may also feel different but whose differences may not be so apparent. How do you now as an emerging leader, and as a mentor, make sure that you create an inclusive and safe environment for your younger colleagues and your mentees? Dr. Narjust Duma: One of the things that resulted was the founding of the Duma Lab, which is a research group that focuses on cancer, health disparities, social justice as a general, and inclusion in medical education. So, one of the things that I practice every day is cultural humility. I continue to read and remember the principles. I have them as the background on my computer at work. The number one principle in lifelong learning is that we learn from everyone and that we don't know everything and other people's cultures, and subculture, we learn their culture is rich. So, in every meeting, I remind the team of the principles of cultural humility when somebody is joining the lab. I have one-on-one meetings, and I provide information and videos about cultural humility because the lab has been created as an environment that's safe. We have a WhatsApp group that is now kind of famous - it's called The Daily Serotonin. The majority of the members of the lab are part of marginalized groups, not only by gender but race, religion, sexual and gender orientation. So, we created this group to share good and bads, and we provide support. So, a few weeks ago, a patient made reference to one of their lab member's body, the patient was being examined and that was quite inappropriate. The member debriefed with the group and we all provided insights on how she had responded, and how she should respond in the future. That's not only learning from the person that brought the scenario but anybody else feels empowered to stop those microaggressions and stop those inappropriate behaviors that woman particularly face during clinical care. So, cultural humility, and having this WhatsApp group that provides a place where, first, I remind everybody that's confidential, and a place in which anything is shared has been very successful to create inclusivity in the group. Dr. Lidia Schapira: You have such energy and I'm amazed by all of the things that you can do and how you have used social connection as a way of bringing people up. So, can you give our listeners perhaps some tips for how you view creating a flatter culture, one with fewer hierarchies that makes it safer for learners and for those who are practicing oncology? What are three quick things that all of us can do in our work starting this afternoon? Dr. Narjust Duma: The concept is that we all can be allies. And being an ally doesn't take a lot of time or money because people think that being an ally is a full-time job, it is not. So, the first one tip will be to bring people with you. Your success is not only yours. It's a success of your mentees. It's a success of your colleagues. So, don't see your success as my badge on my shoulder. It's the badge that goes on everyone. So, bring people in, leave the door open, not only bring them but leave the door open because when you do it helps the next generation. Two, little things make a difference. I'm going to give you three phrases that I use all the time. When you think somebody has been marginalized in a meeting, bring them up, it takes no time. For example, 'Chenoa, what do you think we can do next?' You're bringing that person to the table. Two, you can advocate for other women and minorities when they're easily interrupted in a meeting. This takes no time. 'I'm sorry you interrupted Dr. Duma. Dr. Duma?' So, that helps. The third thing is very important. You can connect people. So, one of the things is that I don't have every skill, so I advocate for my mentees and I serve as a connector. I have a mentee that is into bioinformatics. Lidia, that's above my head. I don't understand any of that. So, I was able to connect that person to people that do bioinformatics. And follow up. My last thing is to follow up with your people because they need you. Dr. Lidia Schapira: Well, I'm very glad that you're not an oil engineer in the Emirates. I'm sure your family is incredibly proud. I hope that you're happy where you are. We started a little bit about where you started, I'd like to end with your idea of where you imagine yourself 10 years from now? Dr. Narjust Duma: That is a question I don't have an answer prepared for. I guess my career development plans I think I want to be in a place where I look back and I can see that the careers of my mentees being successful. And I think that we measure my success based not on myself, I would measure my success in 10 years based on where my mentees are. And medical education is a more inclusive place. That will be the two things I want to see in 10 years. In the personal aspect, I don't know if we have art, don't know if we have those grants as long as my mentees are in a better place. Dr. Lidia Schapira: It has been such a pleasure to have this conversation. Thank you so much, Narjust. Dr. Narjust Duma: Thank you. Dr. Lidia Schapira: Until next time, thank you for listening to this JCO's Cancer Stories: The Art of Oncology podcast. 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Narrator: My White Coat Doesn't Fit, by Narjust Duma, MD (10.1200/JCO.21.02601) There I was, crying once again all the way from the hospital's parking lot to my apartment, into the shower, and while trying to fall asleep. This had become the norm during my internal medicine residency. For years, I tried hard every day to be someone else in order to fit in. It started with off-hand comments like "Look at her red shoes," "You are so colorful," and "You are so Latina." These later escalated to being interrupted during presentations with comments about my accent, being told that my medical school training in my home country was inferior to my US colleagues, and being assigned all Spanish-speaking patients because "They are your people." Some of those comments and interactions were unintentionally harmful but led to feelings of isolation, and over time, I began to feel like an outsider. I came to the United States with the dream of becoming a physician investigator, leaving behind family, friends, and everything I knew. Over time, I felt pigeonholed into a constricting stereotype due to my ethnicity and accent. Back home, I was one of many, but in this new setting, I was one of a few, and in many instances, I was the only Latina in the room. I was raised by divorced physician parents in Venezuela; my childhood years were often spent in the clinic waiting for my mother to see that one last patient or outside the operating room waiting for my father to take me home. The hospital felt like my second home, growing up snacking on Graham crackers and drinking the infamous hospital's 1% orange juice. "She was raised in a hospital," my mother used to say. Sadly, that feeling of being at home in the hospital changed during medical training as I felt isolated and like I did not belong, making me question my dream and the decision to come to the United States. I remember calling my family and crying as I asked "Why did I leave?" "Why didn't you stop me from coming here?" and seeking permission to return home. I felt like I was disappointing them as I was no longer the vivid, confident young woman who left her home country to pursue a bright future. I remember one colleague, Valerie (pseudonym), from Connecticut. Valerie attended medical school in the United States, did not have an accent, and was familiar with the American health care system. She understood how the senior resident-intern relationship functioned, a hierarchy that continually confused me. Over the following weeks, I took a closer look at how my colleagues and other hospital staff interacted with Valerie. I noticed that people did not comment about her clothing or personality. She was "normal" and fit in. I remember my senior resident asking me, "Narjust, why can't you be more like Valerie?" Ashamed, I mumbled that I would try and then ran to the bathroom to cry alone. That interaction was a turning point for me; I got the message. I needed to change; I needed to stop being who I was to be accepted. As the years passed, I kept key pieces of my personality hidden, hoping I could earn the respect of my colleagues. I refrained from sharing my personal stories as they were different from those around me. I grew up in a developing country with a struggling economy and an even more challenging political situation. It was clear that we simply did not share similar experiences. When I sought help from my senior residents and attending physicians, my feelings were often minimized or invalidated. I was told that "residency is tough" and that I should "man up." A few even suggested that I mold my personality to fit the box of what a resident physician was supposed to be. I slowly realized that my clothing changed from reds and pinks to greys and blacks because it was "more professional"; my outward appearance faded, as did my once bright sense of humor and affability. All these issues led to depression and an overwhelming sense of not belonging. A few months later, I was on antidepressants, but the crying in the shower continued. Rotation by rotation, I looked for a specialty that would help me feel like I belonged, and I found that in oncology. My mentor embraced my research ideas; my ethnic background or accent did not matter; we had the same goal, improving the care of our patients with cancer. I got to travel to national and international conferences, presented my research findings, and received a few awards along the way. From the outside, it looked like I was thriving; my mentor often called me a "Rising Star," but in reality, I was still deeply depressed and trying to fit in every day. My career successes led me to believe that not being myself was the right thing to do. I felt isolated; I was trying to be someone I was not. A year later, I matched at my top choice oncology fellowship program; the program had the balance I was looking for between clinical care and research. This meant that I needed to move to the Midwest, further away from family, and to an area of the country with less racial and ethnic diversity. After 2 years on antidepressants and the 10 extra pounds that came with it, my white coat did not fit. My white coat felt like a costume that I would put on every day to fulfill the dream of being a doctor. I would often wake up in the middle of the night exhausted and depressed. I had all the responsibilities of a hematology/ oncology trainee and the additional full-time job of trying to fit in every day; I was using all my energy trying to be someone I was not. Regardless of my fears, I felt in my element when talking to patients and interacting with my cofellows. Despite having a different skin color and accent, I felt accepted by my patients with cancer. I remember when one of my patients requested to see me while in the emergency room because "Dr Duma just gets me." She had been evaluated by the head of the department and attending physicians, but for her, I washer doctor. Tears of happiness accompanied my bus ride to see her; at that moment, I knew I was an oncologist, and oncology was the place I belonged. The next day, I realized that it was time to be myself: Narjust from Venezuela, a Latina oncologist who was her true self. I searched the bottom of my closet for the last piece of colorful clothing I had saved, a yellow dress. I put on that brightly colored dress for the first time in 5 years and finally felt comfortable being my authentic self; the yellow dress represented freedom and embraced the culture and colors I grew up seeing in my hometown. I finally understood that I brought something special to the table: my unique understanding of the challenges faced by Latinx patients and trainees, my advocacy skills, and my persistence to endure the academic grindstone. Psychotherapy was also an essential part of my recovery; I learned that happiness lived within me as a whole person—hiding my accent, cultural background, and past experiences was also hiding the light and joy inside me. Along the way, I found colleagues who faced the same challenges and validated that my experiences resulted from an environment that excludes the difference and values homogeneity. This route to self-discovery helped me find my calling to support others in situations similar to mine.3 I learned how to incorporate and celebrate my ethnicity in the world of academic oncology by teaching others the power of cultural humility, diversity, equity, and inclusion. Together with newfound friends and colleagues, I cofounded the #LatinasinMedicine Twitter community for those who face similar burdens during their training and careers. The #LatinasinMedicine community was created to share our stories, embrace our culture, and amplify other Latinas in medicine—to create connections that alleviate the sense of isolation that many of us have experienced and serve as role models to the next generation of Latinas in medicine. To help drive systemic change, I founded the Duma Laboratory, a research group that focuses on cancer health disparities and discrimination in medical education. Through research, the Duma Laboratory has shown that my experiences are not unique but rather an everyday reality for many international medical graduates and other under-represented groups in medicine. The Duma Laboratory has become a safe environment for many trainees; we seek to change how mentorship works for under-represented groups in oncology, with the hope that the isolation I felt during my training is not something that future physicians will ever have to endure. After years of depression and self-discovery, my white coat now fits. However, this is not your regular white coat; it has touches of color to embrace my heritage and the ancestors who paved the way for me to be here today. The face of medicine and oncology is changing around the world; young women of color are standing up to demonstrate the strength of our experiences and fuel the change that medical education needs. For all minority medical students, residents, fellows, and junior faculty, we belong in medicine even during those moments when our identity is tested. Through my journey, I learned that we can and must challenge the status quo. I hope to inspire others to join me in this path of advocating for diversity, equity, and inclusion because the time for change is now. I was finally free the moment I realized I could not be anyone else but myself, a proud Latina in medicine and oncology. Dr. Lidia Schapira: Welcome to JCO's Cancer Stories: The Art of Oncology, brought to you by the ASCO Podcast Network, which offers a range of educational and scientific content and enriching insight into the world of cancer care. You can find all of the shows including this one at podcast.asco.org. I'm your host, Lidia Shapira, Associate Editor for Art of Oncology and Professor of Medicine at Stanford. And with me today is Dr. Narjust Duma, Associate Director of the Cancer Care Equity Program and Medical Thoracic Oncologist at Dana Farber and an Assistant Professor at Harvard Medical School. We'll be discussing her Art of Oncology article, 'My White Coat Doesn't Fit.' Our guest has a consulting or advisory role with AstraZeneca, Pfizer, NeoGenomics Laboratories, Janssen, Bristol Myers Squibb, Medarax, Merck, and Mirati. Our guest has also participated in a speaker's bureau for MJH Life Sciences. Narjust, welcome to our podcast. Dr. Narjust Duma: Thank you for the invitation and for letting us share our story. Dr. Lidia Schapira: It's lovely to have you. So, let's start with a bit of background. Your essay has so many powerful themes, the story of an immigrant in the US, the story of resilience, the story of aggression and bullying as a recipient of such during training, of overcoming this and finding not only meaning, but really being an advocate for a more inclusive and fair culture in the workplace. So, let's untangle all of these and start with your family. I was interested in reading that you're named after your two grandmothers, Narcisa and Justa. And this is how your parents, both physicians, Colombian and Dominican, gave you your name, and then you were raised in Venezuela. So, tell us a little bit about your family and the values that were passed on in your family. Dr. Narjust Duma: Thank you for asking. Having my two grandmothers names is something that my mother put a lot of effort into. She was a surgery resident with very limited time to decide to do that. And I don't have a middle name, which is quite unique in Latin America, most people in Latin America have one or two middle names. So, my mother did that to assure that I will use her piece of art, which is my first name. But little does she know that my grandmothers were going to be such an important part of my life, not only because they're in my name, but also because I am who I am thanks to them. So, the first part of my name, Narcisa was my grandma who raised me and she gave me the superpower of reading and disconnecting. So, I'm able to read no matter where I am and how loud it can be and disconnect with the world. So, it is often that my assistants need to knock on my door two or three times so, I don't like being scared because I'm able to travel away. That was also very unique because you will find me in the basketball games from high school or other activities with a book because I was able to block that noise. But it also makes very uncomfortable situations for my friends that find it embarrassing that I will pull a book in the basketball game. And as I grow, thanks to the influence of my grandmothers, I always have these, how can I say, mixed situation, in which they were very old school grandmothers with old school habits and values, and how I'm able to modify that. My grandma told me that you can be a feminist, but you still take care of your house. You can still, you know, cook. And that taught me that you don't have to pick a side, there is no one stereotype for one or another. Because as my mother being a single mother and a surgeon, my parents divorced early on, told me, 'Yes, I can be the doctor but I can also be the person that has more than a career that's able to have hobbies.' I love cooking, and when I'm stressed, I cook. So, I had a grant deadline a few weeks ago and I cooked so much that there was food for days. So, having the names of my grandmothers is very important because I have their values, but I have modified them to the current times. Dr. Lidia Schapira: Let me ask a little bit about reading. I often ask the guests of this podcast who have written and therefore I know enjoy reading and writing, what their favorite books are or what is currently on their night table. But I'm going to ask you a second question and that is what languages do you read in? Dr. Narjust Duma: I prefer to read in Spanish. I found that books in Spanish, even if it's a book that originated in English, have these romantic characteristics. And I often tell my editors, 'Just take into account that I think in Spanish, and write in English'. Because I grew up with Gabrielle Garcia Marquez, and when he describes a street, that's a page of the little things that he describes. So, that's how I write and that's how I read in a very romantic, elaborate way. The aspects of realistic imagism, which is my favorite genre in literature, and there are so many Latin American and South American writers that I don't think that I am going to run out. And when I run out, I reread the same books. I have read all of Gabrielle Garcia Marquez's books twice, and Borges, too. It's the type of stories that allows you to submerge yourself and you imagine yourself wearing those Victorian dresses in the heat of a Colombian street, as you try to understand if, you know, Love in the Time of Cholera, if they were more in love with being in love or what it was happening in the story. And that just gives me happiness on a Sunday morning. Dr. Lidia Schapira: That's beautiful. I must confess that reading Borges is not easy. So, I totally admire the fact that you have managed to read all of his work. And I think that you're absolutely right, that magical realism is a genre that is incredibly fresh, and perhaps for the work that we do in oncology, it's a wonderful antidote in a way to some of the realities, the very harsh realities that we deal with on a daily basis. So, let me ask you a little bit about growing up in Venezuela in the 80s, 90s, early aughts. That must have been difficult. Tell us a little bit about that, and your choice of attending medical school. Dr. Narjust Duma: So, growing up in Venezuela, with a Colombian mother, it was quite a unique perspective because she was very attached to her Colombian roots. So, a lot of the things that happened in the house were very Colombian, but I was in Venezuela. So, it was a unique characteristic of being from a country but your family is not from there. So, my parents are not from Venezuela, my grandparents either, and I'm Venezuelan because I was born and raised there. So, that brought a unique perspective, right? The music that I played in my house was Colombian music, not Venezuelan music. So, my family migrated from Colombia to Venezuela due to the challenges in the early 80s with violence and the Medellin, due to the drug cartels. So, we moved to Venezuela for a better future. And growing up in the first years, Venezuela was in a very good position. Oil was at the highest prices. Economically, the country was doing well. I remember, in my early years, the dollar and the bolivar had the same price. But then little by little I saw how my country deteriorated, and it was very heartbreaking. From a place where the shells were full of food to a place now when there is no food, and you go to the supermarket, and many of them are close. And now you're only limited to buying certain things. And you used to use your federal ID that has an electronic tracking on how much you can buy because of socialism. So, you're only allowed to buy two kilograms of rice per month, for example, you're only allowed to buy this number of plantains. So, every time I go home, because Venezuela is always going to be my home, it doesn't matter where I am., I see how my country has lost pieces by pieces, which is quite very hard because I had a very good childhood. I had a unique childhood because I was raised in hospitals. But I had a childhood in which I will play with my friends across the street. We were not worried about being kidnapped. We were not worried about being robbed. That's one thing that children in Venezuela cannot do right now. Children of doctors – there's a higher risk of being kidnapped as a kid right now if your father is a doctor or your mother. So, my childhood wasn't like that. When I teach my students or talk to my mentees, I'm often selling my country, and saying that's not what it used to be. That's not where I grew up. But every year I saw how it no longer is where I grew up. That place doesn't exist, and sometimes, Lidia, I feel like my imagination may have to fill it out with more good things. But I think it was a good childhood. It's just that nobody in Venezuela is experiencing what I experienced as a kid. Dr. Lidia Schapira: So, both parents were doctors and you chose to study medicine, was this just right out of high school? Dr. Narjust Duma: Even before high school, I found myself very connected to patients. So, since I turned 15, my father would give his secretary a month of vacation because that's the month that we fill in. So, I was the secretary for a month every summer since I was 15 until I was 20. That early exposure allowed me to like get to know these patients and they know I was the daughter, but I was also the secretary. So, I really cherished that. Growing up in my household, we're a house of service. So, our love language is acts of service. That's how pretty much my grandmas and my parents were. So, in order to be a physician, that's the ultimate act of service. I have wanted to be a doctor since I was 11. I think my mother face horrible gender harassment and sexual harassment as a female in the surgery in the early 80s, that she tried to push me away from medicine. Early on, when I was 11, or 12, being an oil engineer in Venezuela was the career that everybody should have, right? Like, people were going to the Emirates and moving to different parts of the world and were doing wonderful. So, my mother, based on her experience in the 80s, was pushing me away from it. She's like, 'You can do other things.' My father always stayed in the back and said, 'You can do what you want.' This is how our parents' experiences affect our future. If I wouldn't be this stubborn, I would probably be an oil engineer today, and I wouldn't be talking to you. Dr. Lidia Schapira: So, you went to medical school, and then after you graduated, what did you decide to do? Because when I look at what we know about the history there is I think you graduated in '09, and then the story that you write about sort of begins in '16 when you come to New Jersey to do training in the US, but what happened between '09 and '16? Dr. Narjust Duma: I started residency in 2013. '16 was my fellowship. So, going to medical school was one of the hardest decisions I made because right in 2003 and 2004 was a coup in Venezuela where part of the opposition took over the country for three days, and then the President of the time came back and the country really significantly destabilized after that coup. Most schools were closed. Entire private industries were closed for a month. And I think for some people, it's hard to understand what happened. Everything closed for a month, McDonald's was closed for a month. There was no Coke because a Coke company was not producing. Everything was closed. The country was just paralyzed. So, my mother and I, and my family, my father, took into account that we didn't know when medical school would resume in Venezuela. We didn't know if the schools would ever open again. I decided to apply for a scholarship and I left Venezuela at the age of 17 to go to the Dominican Republic for medical school. Very early on, I noticed that I was going to be a foreigner wherever I go because I left home. And since then, I think I became very resilient because I was 17 and I needed to move forward. So, that is what happened in 2004. I left everything I knew. I left for the Dominican. I do have family in the Dominican, but it was very hard because even if you speak the same language, the cultures are very different. And then I went to medical school in the Dominican and when I was in the Dominican Republic, I realized I really wanted to do science and be an advocate and focus on vulnerable populations with cancer. So, then I made the decision to come to the United States, I did a year of a research fellowship at Fred Hutchinson, and then I went to residency in 2013. Dr. Lidia Schapira: I see. And that's when you went to New Jersey, far away from home. And as you tell the story, the experience was awful, in part because of the unkindness and aggression, not only microaggression but outright bullying that you experienced. In reading the essay, my impression was that the bullying was mostly on two accounts. One was gender. The other was the fact that you were different. In this particular case, it was the ethnicity as a Latin or Hispanic woman. Tell us a little bit about that so we can understand that. Dr. Narjust Duma: I think what happened is that perfect example of intersectionality because we are now the result of one experience, we're the result of multiple identities. So many woman have faced gender inequalities in medicine, but when you are from a marginalized group, those inequalities multiply. I have an accent and clearly a different skin color. I grew up in a family in which you were encouraged to be your true self. My grandmothers and my mother said, 'You never want to be the quiet woman in the corner because the quiet woman never generates change.' That's what they said, and I bet there are some who do. But that intersection of my identities was very challenging because I was seen as inferior just for being a woman and then you multiply being one of the few Latinas you are seen like you are less just because you are - it doesn't matter how many degrees or papers or grants you had done and all, I was the most productive research resident in my residency for two years in a row - but I would still be judged by my identity and not what I have produced, or what I do on my patients' experiences, which were great – the feedback from my patients. It's just because I was the different one. Dr. Lidia Schapira: When I hear your story about your origins, it seems to me that you came from a very capable loving family, and they basically told you to go conquer the world, and you did. And then you arrive and you're a productive successful resident, and yet, you are marginalized, as you say. People are really aggressive. Now that you've had some years that have passed, if you think back, what advice would you give that young Narjust? Dr. Narjust Duma: My number one advice, would be that, I will tell myself is that I belong, in many instances, I feel like I didn't belong. It makes me question all the decisions to that day because when you're doing a presentation, and I still remember like today, and you're interrupted by someone, just for them to make a comment about your accent, it really brings everything down to your core, like, 'Is my presentation not accurate? Is the information not all right? And why am I here? Why did I left everything I love to be treated like this?' Dr. Lidia Schapira: Of course. So, from New Jersey, you write in your essay that you really discover your passion for cancer research, and you land in a fellowship with a mentor who is encouraging, and things begin to change for you. Can you tell us a little bit about that phase of your training in your life where you slowly begin to find your voice in the state, that also where you crash, where you find yourself so vulnerable that things really fall apart? Dr. Narjust Duma: So, when I was a resident, I didn't know exactly - I was interested in oncology, but I wasn't sure if it was for me. So, Dr. Martin Gutierrez at Rutgers in Hackensack is the person who I cold emailed and said, 'I'm interested in studying gastric cancer in Hispanic patients because I think that patients in the clinic are so young.' He, without knowing me or having any idea, he trusted me. We still meet. He still follows up with me. He encouraged me. I think him being a Latino made the experience better, too, because I didn't have to explain my experience to him. I didn't have to explain that. He understood because he went through the same things. And he's like, 'I got you. Let's follow what you want to do.' He embraced who I was, and how I put who I was into my research. And thanks to Dr. Gutierrez, I'm at the Mayo Clinic as an international medical grad. So, finding a place in which my ideas were embraced was very important to allow me to stay in medicine because, Lidia, I can tell you several times, I decided to leave. I was very committed to finding something else to do or just being a researcher and leaving clinical medicine behind. So, when I went to Mayo, I still followed with that mentor, but I already knew what I wanted to do. I wanted to do cancer health disparities. I wanted to do inclusion and diversity. And that allowed me to develop the career I have now and is having that pathway because I, with my strong personality and everything else, faced this discrimination, and I can imagine for other trainees that may still be facing that or will face that in the future. So, I use the negative aspects to find my calling and do many things I have done after that. Dr. Lidia Schapira: Speaks to your strengths and your determination. Let's talk a little bit about the people who may also feel different but whose differences may not be so apparent. How do you now as an emerging leader, and as a mentor, make sure that you create an inclusive and safe environment for your younger colleagues and your mentees? Dr. Narjust Duma: One of the things that resulted was the founding of the Duma Lab, which is a research group that focuses on cancer, health disparities, social justice as a general, and inclusion in medical education. So, one of the things that I practice every day is cultural humility. I continue to read and remember the principles. I have them as the background on my computer at work. The number one principle in lifelong learning is that we learn from everyone and that we don't know everything and other people's cultures, and subculture, we learn their culture is rich. So, in every meeting, I remind the team of the principles of cultural humility when somebody is joining the lab. I have one-on-one meetings, and I provide information and videos about cultural humility because the lab has been created as an environment that's safe. We have a WhatsApp group that is now kind of famous - it's called The Daily Serotonin. The majority of the members of the lab are part of marginalized groups, not only by gender but race, religion, sexual and gender orientation. So, we created this group to share good and bads, and we provide support. So, a few weeks ago, a patient made reference to one of their lab member's body, the patient was being examined and that was quite inappropriate. The member debriefed with the group and we all provided insights on how she had responded, and how she should respond in the future. That's not only learning from the person that brought the scenario but anybody else feels empowered to stop those microaggressions and stop those inappropriate behaviors that woman particularly face during clinical care. So, cultural humility, and having this WhatsApp group that provides a place where, first, I remind everybody that's confidential, and a place in which anything is shared has been very successful to create inclusivity in the group. Dr. Lidia Schapira: You have such energy and I'm amazed by all of the things that you can do and how you have used social connection as a way of bringing people up. So, can you give our listeners perhaps some tips for how you view creating a flatter culture, one with fewer hierarchies that makes it safer for learners and for those who are practicing oncology? What are three quick things that all of us can do in our work starting this afternoon? Dr. Narjust Duma: The concept is that we all can be allies. And being an ally doesn't take a lot of time or money because people think that being an ally is a full-time job, it is not. So, the first one tip will be to bring people with you. Your success is not only yours. It's a success of your mentees. It's a success of your colleagues. So, don't see your success as my badge on my shoulder. It's the badge that goes on everyone. So, bring people in, leave the door open, not only bring them but leave the door open because when you do it helps the next generation. Two, little things make a difference. I'm going to give you three phrases that I use all the time. When you think somebody has been marginalized in a meeting, bring them up, it takes no time. For example, 'Chenoa, what do you think we can do next?' You're bringing that person to the table. Two, you can advocate for other women and minorities when they're easily interrupted in a meeting. This takes no time. 'I'm sorry you interrupted Dr. Duma. Dr. Duma?' So, that helps. The third thing is very important. You can connect people. So, one of the things is that I don't have every skill, so I advocate for my mentees and I serve as a connector. I have a mentee that is into bioinformatics. Lidia, that's above my head. I don't understand any of that. So, I was able to connect that person to people that do bioinformatics. And follow up. My last thing is to follow up with your people because they need you. Dr. Lidia Schapira: Well, I'm very glad that you're not an oil engineer in the Emirates. I'm sure your family is incredibly proud. I hope that you're happy where you are. We started a little bit about where you started, I'd like to end with your idea of where you imagine yourself 10 years from now? Dr. Narjust Duma: That is a question I don't have an answer prepared for. I guess my career development plans I think I want to be in a place where I look back and I can see that the careers of my mentees being successful. And I think that we measure my success based not on myself, I would measure my success in 10 years based on where my mentees are. And medical education is a more inclusive place. That will be the two things I want to see in 10 years. In the personal aspect, I don't know if we have art, don't know if we have those grants as long as my mentees are in a better place. Dr. Lidia Schapira: It has been such a pleasure to have this conversation. Thank you so much, Narjust. Dr. Narjust Duma: Thank you. Dr. Lidia Schapira: Until next time, thank you for listening to this JCO's Cancer Stories: The Art of Oncology podcast. If you enjoyed what you heard today, don't forget to give us a rating or review on Apple podcasts or wherever you listen. While you're there, be sure to subscribe so you never miss an episode of JCO's Cancer Stories: The Art of Oncology podcast. This is just one of many of ASCO's podcasts. You can find all of the shows at podcast.asco.org. The purpose of this podcast is to educate and 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.
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Jun 14, 2022 • 24min

Cancer and Armed Conflict: Crossing Realities

"Cancer and Armed Conflict: Crossing Realities," by Tamamyan, et al: the story of a young patient with cancer from Nagorno-Karabakh Republic and his thoughts and sufferings during the war in 2020. TRANSCRIPT Narrator: Cancer and Armed Conflict: Crossing Realities, by Alisa Kamalyan, MSc, Yeva Margaryan, MD, MPH, Jemma Arakelyan, MD, Liana Safaryan, MD, Gevorg Tamamyan, MD, MSc, DSc, and Stella Arakelyan, MD, MPH, MscIH, PhD (10.1200/JCO.22.00663) In 2007, Armen, a 6-year-old boy from a village in the mountainous Nagorno-Karabakh Republic (NKR), was diagnosed with Hodgkin lymphoma. NKR is a de facto independent state located in the South Caucasus which has historically been inhabited by Armenians and declared its independence after the collapse of Soviet Union in 1991. Armen's hometown had a small clinic offering only routine health care services. To receive treatment for lymphoma, he and his family had to travel 350 kms to the Hematology Center in Yerevan, the capital of Armenia. The journey was long and exhausting, but every visit to the Hematology Center filled him with hope, and, ultimately, he achieved a complete remission. Thirteen years later, Armen, now a young man, returned to the Hematology Center for evaluation of rapid weight loss, persistent pain, and chronic fatigue and was diagnosed with osteosarcoma. First-line chemotherapy and surgery were ineffective, as was second-line therapy with high-dose methotrexate, doxorubicin, and cisplatin. The tumor was growing and spreading rapidly, causing unbearable pain. Throughout the course of his disease, Armen kept a diary. Recently, his family shared his journal with us, hoping to give a voice to Armen and other young patients with cancer struggling with physical and emotional distress along with overwhelming existential angst. "In the hospital I had dreams which I could not understand. In one of the dreams, it was midnight, and I knew that I was going to die in 3 hours, but time was running backward, which meant that I was going to die at 8 pm … In another dream, I was undergoing a course of chemotherapy when my phone rang, the call was from Hell. I picked up the phone, and it was one of my relatives from Nagorno-Karabakh who is no longer alive. But you are dead …, I said to her, surprised. How are you, my dear? She replied. Once I hung up the phone, a man dressed in black sat down next to me, made the sign of the cross, and then disappeared …" At the time, there were no clinical trials available for patients with osteosarcoma in Armenia and his family could not afford to take Armen abroad to receive any experimental therapy, so, after exhausting all available treatment options, Armen returned home to live out his days in the village that helped raise him. We knew that his home environment would provide the support he needed as his cancer journey came to its tragic end. We hoped for his comfort, safety, and peace among those who loved him. On the morning of September 27, 2020, Armen awoke in a panic, distressed by the loud explosions of bombs dropped on his village as the war between the NKR and Azerbaijan erupted. This conflict, coinciding with the rapid spread of COVID-19 in NKR and Armenia, interrupted access to cancer care and essential palliative medications. Armen was bedridden with intolerable pain and a dwindling supply of analgesics. The encroaching sounds of high-intensity blasts further amplified his anguish and suffering. Armen's psychological trauma resulted in nightmares and chronic anxiety as evidenced by his diary entries. "My house keeps shaking with each explosion, resonating like a high-scale earthquake. Soon, the blasts will shatter all the windows in my house" (October 1, 2020). "Our electricity, heating, and water supplies are cut off. My supply of painkillers is running out" (October 9, 2020). "Don't think about death– think about the future…" Within weeks, the Nagorno-Karabakh conflict escalated, destroying homes, healthcare clinics, hospitals, and schools, resulting in massive population displacement and hundreds of civilians, including health care providers, being killed or wounded. Given these dire circumstances and Armen's worsening pain and weakness, Armen's family sought refuge in Armenia, where his battle with cancer ultimately ended. After the war ended on November 9, 2020, Armen's family took him back home to be laid to eternal rest. This had been his last wish. Armen was a fearless soul. He was a fighter who had already survived cancer once and continued his fight with a smile on his face, giving hope to many of our other patients and staff. But the day the Azeris attacked his home, the smile left his face forever. For our health care team and other colleagues, the 44 days of the Nagorno-Karabakh war caused a psychosocial and emotional crisis. We could not concentrate on our work. Hundreds of soldiers were being killed daily, and many colleagues felt compelled to leave the cancer wards to join frontline military health care workers. With increasing numbers of surgeons, anesthesiologists, and nurses traveling to the NKR or bordering regions of Armenia, we experienced acute staff shortages, undermining the provision of quality care to our patients. COVID-19, the main health care concern for the rest of the world, was no longer our priority, even as the incidence increased 8-fold during the war.1 The vicious cycle of war and pandemic was tormented as we tried to balance our own emotions and fears while continuing to care for and support our patients with cancer. Armen's story provides only a glimpse of what people with terminal cancer and the health care workforce experience in resource-limited settings affected by war. Today, around half of the world's population lives in countries affected by war, with predictions that cancer will disproportionately affect these regions in the coming decades. Because of multifactorial resource limitations, patients with cancer from these areas are usually diagnosed in advanced stages of the disease when palliation is the only viable option for care. Worldwide, an estimated 78% of adults and 98% of children in need of palliative care reside in resource-limited regions. A third of adults needing palliative care services are patients with cancer and 80% of them live with moderate or severe chronic pain. Despite these data, only 10% of the world's overall morphine consumption occurs in resource limited regions. The provision of palliative care services is even more strained by armed conflict. Recently, the World Health Organization reported that palliative care was available in less than two thirds of Syrian health care facilities and that all cancer centers surveyed in Syria lacked immediate-release oral morphine and trained palliative cancer care staff. Currently, we are witnessing an escalating war in Ukraine. The images from this and any new conflict around the world bring back our own wartime experiences with haunting clarity. The desperation we felt trying to care for the most vulnerable patients during lethal and chaotic times will never leave us. How many children are now writing tales of death in their journals? How many villages and families are being shattered, unable to provide last days of peace and comfort to their sick and dying loved ones? Despite recent initiatives to include oncologic and palliative care contingencies in humanitarian responses to crisis, they continue to remain a relatively low priority and have been minimally integrated into emergency response plans during armed conflicts. Protocols detailing how to provide basic care to patients with cancer and maintain supplies of essential medications are yet to be fully developed. We urge the international community to take action to address the existing obstacles to cancer care delivery in conflict affected regions to mitigate the adverse impact of cancer and armed conflict on our most vulnerable patients. Dr. Lidia Schapira: Welcome to JCO's Cancer Stories: The Art of Oncology, brought to you by the ASCO Podcast Network, which offers a range of educational and scientific content and enriching insights into the world of cancer care. You can find all of the shows, including this one at podcast.asco.org. I'm your host, Lidia Schapira, associate editor for Art of Oncology and Professor of Medicine at Stanford. And with me today is Dr. Gevorg Tamamyan, Chairman and Professor of the Department of Pediatric Oncology and Hematology at Yerevan State Medical University, head of the Pediatric Cancer and Blood Disorders Centers of Armenia, and Chairman of the Board of the Institute of Cancer and Crisis. We will be discussing his Art of Oncology article, 'Cancer and Armed Conflict Crossing Realities.' Our guest has travel, accommodation, and expenses from Roche. Gevorg, welcome to our podcast. Dr. Gevorg Tamamyan: Thank you! Thank you very much, Dr. Schapira, for the invitation and for this opportunity to speak with you. Dr. Lidia Schapira: It is our pleasure. Can you tell our listeners a little bit about the origin of this narrative? How your team come together to tell the story now? Dr. Gevorg Tamamyan: So, living in a region where every day you face not only - and being an oncologist in the meantime - facing death not only from cancer but also from the war, it makes you think about cancer from a different perspective. During my not-so-long life, I experienced three wars. The second one was a little bit shorter, but the first one was quite a long one. I was a young boy at the school age and the second one, the large one, was recently in 2020. Later on, being already an oncologist, when every day you are walking in between life and death and your everyday work is dedicated to saving one more life, sometimes you realize that with one bomb people can kill hundreds and thousands. So, having this on my mind, I started exploring the field a few years ago, even not knowing that a new war is going to begin in 2020. And we wrote an editorial in Nature Cancer Reviews, I think it was 2019, if I'm not mistaken, about how the war affects cancer patients and cancer care in general. And then in 2020, when we had this sad experience, then we thought that we must express our feelings and reveal what happened, what happens with cancer patients during the war situation. And just recently, of course, there is a new war in the world and we see all this struggling every day. So, unfortunately, this topic does not lose its actuality, I would say. Dr. Lidia Schapira: You chose to tell the story of a young boy who first came to your major academic center in Armenia at age 6, and you treated and cured him of Hodgkin's lymphoma. And then he returns as a young adult, 19 years old, with an osteosarcoma that you treated. But unfortunately, treatment was not curative, and he goes back to his village and needs to receive palliative care but is suffering now in 2020 with the war in NKR. Can you tell our readers a little bit about the Nagorno-Karabakh war and how it affected your team and the care you provided to children and young adults with cancer? Dr. Gevorg Tamamyan: So, Nagorno-Karabakh Republic is located in South Caucasus. It's historically inhabited with Armenians and it has been a land for wars for many years. The first war, what I observed, started in the late 1980s. I was just born a few years ago and I cannot clearly say what happened, but I know from the history definitely. There were massacres of Armenians and the war erupted. But for many years, for three decades, the situation was unstable. And during the COVID 19 pandemic, Nagorno-Karabakh Republic was attacked by Azerbaijan, supported by Turkey. And just to kind of illustrate what the situation is, there are like 100- 150,000 people residing there. So, this is a small country. It was attacked and there were thousands of people killed and tens of thousands displaced. So, this was the sad reality, what we have seen, of course. One day I was in Stepanakert, the capital of the Nagorno-Karabakh Republic when bombs were falling on the civilian buildings. I was on the ground floor of the hospital, and I was seeing how these wounded people, civilians, were coming to the hospital. It was really, I mean, my English is very poor to describe all this situation, but back in the hospital, we had a lot of patients from Nagorno-Karabakh and we were seeing their struggles. It was not only from cancer. Some people were losing part of their families, and some of their family members were at the worst stage. And kids, I mean, there was no smile on the kids' faces. It's difficult to describe. I think it happens with every war, anywhere in the world. And we decided to describe this young boy's story and through this story, to deliver the message about the war, about cancer, and about how patients with cancer struggle during this crisis and these difficult times. Dr. Lidia Schapira: You tell in your story very movingly how difficult it was for this young man to run out of his pain medication, to also run out of all of the sources of delivery of palliative care. And also, you tell us a little bit about how this made your team feel, that you were struggling with the war, you were struggling with this idea that you couldn't relieve the symptoms and pain of your patients. Tell us a little bit about how your team struggled through this and what helped you as you went about your work every day? Dr. Gevorg Tamamyan: Our hospital is a major hospital not only for pediatric cancer. We have the only pediatric cancer center located in the hospital, but also our center, the hematology center, where our pediatric cancer center is located, is the major and the main blood bank. So, we were kind of primarily involved in saving patients' lives through the blood bank, of course, because all the people were coming to donate the blood and we were sending this blood to different hospitals. And I must confess that this pain medication and palliative care is an issue not only during the war but also during peacetime in many resource-limited settings. But during the war it becomes dramatic. And for the people living in the war area, in the region affected by conflicts, it's almost impossible for them to receive this treatment. I've seen the stories from Syria, back, let's say ten years ago, photos from the hospitals, and photos of kids who were not able to receive the treatment. Let's say a kid with lymphoma with all the chances to get cured and he or she is not receiving the medications because there is a war, because people fight, and people are dying and kids are dying in pain because they are not able to receive their opioids, their painkillers. So, for doctors, of course, realizing this is very difficult. And the second one, because the supply chains are kind of disrupted, it's difficult to get the medications on time. Then many doctors leave the hospitals and go to the war front and let's say, do surgeries there or just help the wounded people. Sometimes we're out of the staff or out of the specialists, some of our surgeons. We are a small country and there might be four narrow specialists, one or two specialists, and when your specialists are at the military hospitals, how can they operate? How can they do surgeries for the kids? And of course, everyone has a relative, everyone has a friend who is there and you are thinking about them even if you are not there. So, from all sides, you are depressed. And that's the war. That's how the war looks. In the cities which are under the bombs, of course, the situation is even more difficult than what we see in different parts of the world. Dr. Lidia Schapira: The reality of the war is always awful and I really admire your ability to bring this to our attention in such a clear way. Let me ask the question again. How do you and your colleagues get through the day? And I imagine that you're probably sort of reliving the trauma in a way when there is a new war in the world, as there is now in your general area of the world. How are you all doing? Dr. Gevorg Tamamyan: With every new war, including this new war in Ukraine, I mean, people are dying. You see these images from the cities. The worst thing is that you know these people are from both sides and you have friends from both sides, and even these fighting sides, I mean, they were brothers a day ago. And you see how kids are dying, you see how young people are dying, and you see displaced people who are leaving their houses. It's really very difficult. In the meantime, the situation here is also not calm. During the last months, several times we observed a similar situation in Karabakh, again, wherein several villages people were displaced. It's kind of a no war, no peace situation. And can you live with the thought that the war is going to begin again soon and you don't know what's going to happen? That's the reality. Dr. Lidia Schapira: So, you bring our attention, Gevorg, to the enormous disruption in care for children and adults with cancer caused by war, both the interruption of cancer-directed care, but also the interruption of palliative care. There's a general feeling, I think, among many oncologists throughout the world of wanting to help. How can people help? Dr. Gevorg Tamamyan: It's very difficult, to be frank, to single out a solution, but there are different ways. First of all, I think one kind of help would be just to write an email and say, 'How are you doing?' Because in the world, what we are lacking the most, it's paying a little bit more attention to our friends and neighbors and people we know. And of course, with our routine daily life, we are so busy, but even a small message can help the people with the stress. At that time, maybe someone will say, "Okay, do you have ten ampoules of this or fractions of this drug?" Or something like that. "Or would you give me advice on how I might manage this child?" But of course, my suggestion would be that all the professional societies and humanitarian organizations, and major cancer institutions put their efforts into trying to find systematic solutions for how it is possible to help patients or professionals in the conflict-affected regions, and how to help displaced populations. And not only when the conflict erupts or war erupts because there are conflicts all over the world right now. For example, people in Syria, right? They experience so many struggles. I was reading in the ASCO post, there was an editorial, that tens of thousands of professionals left Syria. So, people are left without basic health care, and similarly in Iraq, Afghanistan, Ukraine, and in many parts of the world. So, I think a systematic effort is needed to help the patients and professionals. I'm sure when we get together, we'll find better solutions. But of course, the best way is to keep the peace. But sometimes it's out of our reach. Dr. Lidia Schapira: That's right. So, some things are out of our reach. But one of the things that we can all do is, as you so beautifully articulated, to show some solidarity and to start by reaching out to a colleague we know or to somebody who is in that area just by checking in, 'How are you doing?', 'Is there something I can do to help?' And then, of course, through the power of these stories, I think to sort of help people understand that there are ways of getting involved, as you say, to think about creating perhaps a better infrastructure to deal with both cancer care and pain and symptom management for all the people affected by and displaced by war. Dr. Gevorg Tamamyan: Yeah, I agree, definitely. Dr. Lidia Schapira: Do you have a final message perhaps for our listeners, Gevorg? Let me give you the last word. Dr. Gevorg Tamamyan: We are talking about war and we are talking about cancer. My only wish is for there to be peace in the world and there is a cancer-free world, of course. Dr. Lidia Schapira: Thank you so much for taking the time out of your busy schedule to share your thoughts. Thank you so much to you and your team for sending this beautiful essay to us. Until next time, thank you to our listeners for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review on Apple Podcasts or wherever you listen. Be sure to subscribe so you never miss an episode. JCO's Cancer Stories: The Art of Oncology is just one of ASCO's many podcasts. You can find all of the shows at podcasts.asco.org. 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.
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May 31, 2022 • 26min

A Soft Spot

"A Soft Spot," by Rebecca Snyder: A surgical oncologist discusses the hidden emotional toll experienced by patients with cancer. TRANSCRIPT Narrator: 'A Soft Spot', by Rebecca A. Snyder, MD, MPH. I remember a day as a child when my father, a vascular surgeon, came home and immediately retreated to his bedroom. He did not emerge for some time, and when he did, he spoke very little to anyone. When I asked my mother why, she told me softly, 'One of your father's favorite patients died today, and he is sad.' This surprised me at the time that my father felt so deeply for his patients that it affected him for hours after coming home from work. I understand it better now. I first met Gary after his medical oncologist asked me to consider operating on him for colorectal liver metastases. During our initial visit, I observed that he was a quiet man: nervous, kind, and polite, saying little unless prompted. Over time, I came to learn that he was a solitary person who found fulfillment and purpose in his work, enjoying hunting and fishing in his spare time. He lived almost an hour and a half away in a rural part of North Carolina. Outside of his visits, we communicated mostly via his brother, because his cell phone rarely had reception. In the months before our first visit, he had been treated heavily with chemotherapy and appeared to have had a good response to treatment. Although he had disease in both sides of his liver, it looked as though his disease was resectable with a two-stage operation. The first stage to remove the left part of his liver and the second stage to remove two metastases in his right liver. He was young, in his early 50s, and otherwise healthy - a good candidate for surgery. The first-stage operation went smoothly, but when I saw him back in the office to plan for the second, his imaging revealed significant growth in the two remaining metastases in his right liver. To make matters worse, his normal liver had failed to hypertrophy enough to allow for another resection. He silently stared at the floor, visibly disappointed when I shared this with him. I told him I was disappointed too. Together with his clinical team, we then embarked on a series of treatments, beginning with microwave ablation therapy to the growing tumors. Unfortunately, in the interim, he developed a new liver metastasis with resulting biliary obstruction. We attempted unsuccessfully to drain his liver with an endoscopic stent with the goal to restart systemic chemotherapy. At our most recent visit, I expressed my concerns that the endoscopic stent had not been effective and recommended a percutaneous drain to decompress his bile duct. His gaze drifted to the floor. Sensing he was upset, I placed a hand on his shoulder, hoping to convey a steadiness and confidence that might offer some reassurance. As tears formed in his eyes, I felt his discomfort at displaying emotion in front of me, so I offered him a few minutes of privacy with his brother. Although he had been willing to undergo repeated endoscopic procedures, it seemed as though the idea of having a drain outside his body, a visible and tangible reminder of his progressive cancer, was clearly distressing to him. When I re-entered the room, we reviewed our plan for him to have an external drain placed and then begin a modified regimen of chemotherapy next week, which he and I both knew would not be curative. We did not speak this aloud, but the eye contact he made with me communicated that we shared a common understanding. I silently hoped that it would buy him some time at least. Two weeks later, I unknowingly clicked open an automated message in the electronic health record stating very matter-of-factly that Gary had been brought in by emergency medical services, dead on arrival, from a gunshot wound. I called his medical oncologist, who reluctantly confirmed the news. He told me he had hoped that I would not find out because he knew I would not take it well. Suffice it to say, he was right. Although most of the cancers I treat, pancreatic, metastatic, colorectal, and cholangiocarcinoma, are aggressive malignancies with poor long-term survival, Gary was the first patient of mine to commit suicide. When I first learned of Gary's suicide, my mind immediately returned to my last visit with him. 'Had I been too honest and direct, not buffering the concerns we discussed with enough hopefulness? Had he expressed signs of clinical depression that I had missed, misinterpreting his responses as a normal disappointment when in fact they reflected much deeper despair? Should I have confronted him more directly?' I called his older brother while the news still freshly stung, feeling a sense of urgency to make sure his family knew how much Gary mattered to me and to his treatment team. After we exchanged platitudes, I found myself telling him that I had always had a soft spot in my heart for Gary, which was true. I tried very hard then not to cry but failed. As a private person myself, I have always felt a particular sense of community with introverts like Gary, a shared experience of a need for privacy, an appreciation for quiet and aloneness, and a discomfort with being overly expressive among anyone other than close friends or family. Nature or nurture, I inherited this trait from my mother, who preferred pursuing her solitary artistic hobbies over small talk. Like Gary, my mother also became deeply depressed when she was diagnosed with metastatic lung cancer, a depression that worsened when she experienced debilitating side effects of treatment, only to learn that these treatments had not even been effective. As her daughter and one of her caregivers, it was not her physical suffering but her emotional suffering that was most agonizing to witness. During my mother's experience with end-stage cancer, I gained an intimate awareness of cancer's emotional toll in a way never afforded by my formal training or in my clinical practice. Stepping beyond awareness toward confident intervention with my own patients, though, has remained uncomfortable for me. I listen, offering empathy and understanding, explaining treatment options when there are any, and comfort when not. For some patients and families, I morph into a punching bag, offering them an outlet for their anger when I cannot offer them anything else. With Gary, I tried to communicate to him that beneath his displays of hesitancy and reservation, I recognized the struggle he was experiencing, his hopes, and perhaps more importantly, his disappointments. Now, I do not feel like this was enough. Losing patients to cancer is something I have experienced from both a professional and personal standpoint and unfortunately, with which I have grown all too familiar. Knowing that a timid and kindhearted patient of mine felt a sense of hopelessness and despair this deep, however, is acutely and newly painful. I imagine I will always carry a soft spot for Gary with me, a tender soreness that lasts. It may go unnoticed at times, forgotten temporarily with the distraction of another patient's triumph: a curative resection, a follow-up scan with no evidence of disease, or a grandchild's high school graduation witnessed. Yet, I expect it will sting again, just as a bruise does when pressed intentionally and gently, to confirm that it is still there. I will be reminded of him, feeling a familiar ache when I witness someone's growing despair. Next time, I will pause to ask, 'Are you losing hope?' Perhaps you will ask too. Dr. Lidia Schapira: Welcome to JCO's Cancer Stories: The Art of Oncology, brought to you by the ASCO Podcast Network, a collection of nine programs covering a range of educational and scientific content and offering enriching insight into the world of cancer care. You can find all of the shows, including this one at podcast.asco.org. I'm your host Lidia Schapira, Associate Editor for Art of Oncology and Professor of Medicine at Stanford. With me today is Dr. Rebecca Snyder, Assistant Professor of Surgery and Public Health at Brody School of Medicine at East Carolina University. We'll be discussing her Art of Oncology article, 'A Soft Spot'. Our guest has no disclosures. Rebecca, welcome to our podcast. Dr. Rebecca Snyder: Thank you, Lidia. Dr. Lidia Schapira: It's a pleasure to have you with us today. I'd love to start by asking you as a gifted storyteller - I've read some of your stories published also in other publications - tell me a little bit about your writing process. Why do you write? When do you write? What brings a story to the page for you? Dr. Rebecca Snyder: I would say that I don't have a very structured process. Typically, it begins with some ideas that percolate in my mind, oftentimes prompted by one specific event. And then I think once I have time to sort of bring in some other thoughts and start to formulate them, then it really happens when I have a moment to sit down where there's quiet, and my children are not interrupting me and my pager is not interrupting me, and have a few hours to really sit down and get something on the page. And then I do quite a bit of editing over time. I reread a lot and rethink about the way I say things until I get it just right. So, it takes me days. Dr. Lidia Schapira: That's very interesting. Let's go back to something you said. Let's chase after that a little bit. You said something that sort of stays with you or percolates; is it a moment of particular emotional resonance? Is it a difficult situation? Is it something that triggers a deep memory for you? Can you tell us a little bit more about what got you to write, say this piece about Gary, you've also written about your mother, you've written about being a petite surgeon in a sexist world, what are those ideas that stay with you, that then lead you to write about them? Dr. Rebecca Snyder: They're each a little bit different. So, I don't know that I have one answer to that. I think my experience with my mother took me a long time to be ready to write about it. It was something way too emotional for me to even confront for myself for a long time. And then eventually, I felt like I was in a place where I could put something on a page and that was very therapeutic for me. With Gary, that was really an acute event. And when it happened, and I processed it emotionally, I knew that it would help me to write about that. And so, I actually did that, I believe, either the same day or the next day that I learned of that event. At that point, I wasn't necessarily writing with the intention of publishing, but just to help me get through those feelings in that experience. Dr. Lidia Schapira: So, I'd like to talk a little bit about this idea of writing and sharing with others. One thing is to write to process a difficult experience, which you've so nicely stated. The other is to take the further step of writing for publication, which means putting something that's really private out in front of your colleagues, your peers, and so on. Tell us a little bit about that. What triggers you to say, 'Alright, I've written this to process but now I want to share it'? Dr. Rebecca Snyder: I write about how I consider myself an introvert. Some people who know me well aren't surprised to hear that. Some people say, 'Oh, I wouldn't have expected that you consider yourself an introvert.' I think that for me, there are thoughts that I don't feel comfortable communicating, necessarily in a public forum, or with people that maybe I don't know as well. But when I can do it in written form, for some reason, that's more comfortable. So, it's a way for me to share things that I feel compelled to share that I think are important and relevant to other people and may resonate with them in some way, but that I might not be comfortable broadcasting to a large audience. And so, writing allows me to share those feelings within the comfort of my introversion. Dr. Lidia Schapira: What role does narrative and narrative medicine play in your professional portfolio? Do you read other narratives? Dr. Rebecca Snyder: Honestly, it's one of the things I enjoy the most, aside from operating. I don't have formal training in it. Although I imagined I would really enjoy taking some courses. I think my writing has been informed by my own amateur reading and writing over time, I've always been a big reader. I've written about my mother's love for books. And that was something she shared with me beginning when I was a young child. I think it's become part of how I see myself professionally. Although it still feels a bit like a hobby. I think that it should play a significant role in medicine. But I don't think that we have done a great job as a medical community of incorporating that into the dialogue. Dr. Lidia Schapira: I share that sentiment. It would be lovely to see narrative medicine in the mainstream of medical education, rather than perhaps at the margins or as an optional thing for some, I think stories that are enormously powerful. And so, with that, let me ask you another question, and that is, what have you read recently that you recommend to others? Dr. Rebecca Snyder: You asked if I read another narrative medicine? I read, A Piece of My Mind at JAMA every week, and I read the Art of Oncology. One of my other favorite weekly columns is Modern Love in the New York Times, I look for that every Sunday. And then I read a variety of books. I would like to say I read more than I do because I think my clinical reading takes up quite a bit of my time as well. The last novel I read was, The House in the Cerulean Sea by TJ Klein, which was a great, very magical, lovely story. I found with the pandemic that I can't read things that are really intense or distressing. So, I chose things that are uplifting in some way or positive, and that was a lovely fantasy-type book to read. And then I read some nonfiction. I'm reading a book about the Old Testament now because I wanted to learn more about that. So, I try to have a diversity of literature that I'm reading at a given time. Dr. Lidia Schapira: Do you read books or screens? Dr. Rebecca Snyder: Books, 100%. I don't like screens to read. I print off every peer review, I do. I have to print it. I can't read. Other than editing, I don't like to read on a screen. Dr. Lidia Schapira: Let's go back to your story about this patient, Gary, whom you met and operated on. And the need you had to talk about the emotional response you had to learning that he suicided, that is something that is so very difficult for all of us. So, first of all, my deep condolences to you for your loss. Tell us a little bit about the relationship you had with Gary. Dr. Rebecca Snyder: I don't know if we're supposed to admit, as physicians, that we have favorite patients sometimes, but he was one of my favorite patients. What I appreciated about Gary early on is he was very soft-spoken, he was very bashful, and he would blush easily. I could tell he never wanted to be a burden, even in my clinic. So, he didn't want to take up too much of anybody's time. He usually brought his brother with him and allowed his brother to speak for him. And he would speak up when I would ask him directly, but often would nod or use body language and was very quiet. The first time I saw him he had been treated for a long time with chemotherapy. I believe he was sort of under the impression that he did not have any surgical options. He'd never seen a surgeon before, but his medical oncologist approached me and said, 'I know that you're willing to be aggressive, and he's healthy and young, would you consider it?' And I had reviewed his scans ahead of time and thought it was worth an attempt. And so, I met with him and in some ways, I feel like I probably gave him some hope at that point. Maybe he had already processed that, but I reignited that. I got to know him pretty well because I cared for him for a while. Obviously, I saw him several times prior to surgery, then I operated on him, and cared for him postoperatively. And then once he recovered, and we planned for the second stage. And so, I grew attached to him because he was in no way demanding or difficult, but very unassuming, very kind, and just a gentle soul. Dr. Lidia Schapira: And you talk about having moments of sort of shared silence or shared understanding, right? So, it sounds like you, you bonded with him. Most of the communication was done through his brother because he didn't have a cell phone or his cell phone was out of reach, right? And so, you hoped with him that you would be able to really help prolong his life. And then came the bad news that his cancer was growing. Bring us a little bit into the consultation room where you share that news with him. Dr. Rebecca Snyder: When we first talked about it. He was quiet. He looks at the floor a lot. And he didn't verbalize his disappointment, but I could see it. I validated that for him and told him I was disappointed too. But I think when I really saw a shift was when I told him that I thought he needed to have an external biliary drain placed. I think he was continuing to work through all this. And that was really important to his identity, and the idea that he might have to have a drain, I think for him was incredibly distressing. I think to him it kind of marked him as different, as this is permanent, and would mean that he might not be able to work, and that was a big blow for him and I could tell that. I could tell he was starting to tear up but he was very uncomfortable doing that in my presence. So, I told him I would give him a few minutes of privacy and left the room so that he could express his emotions more comfortably. Dr. Lidia Schapira: And that was the last time you saw him, right? Dr. Rebecca Snyder: That's right. Dr. Lidia Schapira: So, then he leaves and you received the news that he suicided, but you're not told directly. You read it in the chart. And you immediately called the medical oncologist and they said that they wanted to protect you from this news. How did that feel? Dr. Rebecca Snyder: It was shocking. You know the Electronic Medical Record has some wonderful things about it. It's easy to keep up to date with your patients, you get alerts anytime a patient of yours is admitted to the hospital or discharged from the hospital. But yet, it's obviously incredibly impersonal and abrupt. And so, I had a notification that he was deceased. My initial thought was, 'Wow! He must have had cholangitis. And he didn't complain about his symptoms and he didn't tell me by the end, so he must have gotten really sick and septic. And then that must have been what had happened. But then when I looked at the chart, and I called his medical oncologist, and I read the details, I realized that's not what had happened, and that was very hard. Dr. Lidia Schapira: I imagine it must have been absolutely awful. Again, my deep condolences to you. How did you deal with that news? How did you get on with your day after that? Dr. Rebecca Snyder: I called his brother first. I wondered, maybe I shouldn't now because it shouldn't be about my grief - I'm the physician - it should be about his family's grief. But I still wanted to connect in some way pretty immediately with someone else, in addition to his medical oncologist. He was very gracious and appreciative. We didn't speak for long, but I just wanted to make sure that he understood that we all cared that that had happened because otherwise, I would never have spoken with him. If I don't reach out. There's no follow-up visit, there's no opportunity in the system to complete that conversation. That helped me a little bit, and then I had to try to turn it off. I had to go lead our GI tumor board and have afternoon clinic and go on with the rest of the day. Dr. Lidia Schapira: Well, I'm deeply grateful to you for having written about it and decided to share it with us. I think that losing a patient is terribly hard. We do connect with our patients and feel for them. But this, learning in this way that one of your patients suicided or found living unbearable, is probably the hardest thing. Fortunately, we don't deal with it often. And many of us have or have not had those experiences. So, thank you so much, Rebecca, for reflecting and sharing that reflection with us. Are there any other thoughts that you want to share with readers of the piece that may help them understand the story or the message here? Dr. Rebecca Snyder: I can say since it's been published, I've already heard from several colleagues that they have experienced something similar. One was particularly devastating because the patient had actually completed therapy but had lost his business and committed suicide because of the financial burden of his care. If you think about it, those are the patients with the greatest extent of distress. But that's not even touching the emotional burden that so many patients are experiencing that we never see. I don't think it's possible or it's on us to alleviate that because some of that is a normal reaction to a cancer diagnosis. But I do think that being aware of the depth of despair that patients can experience is important. And having witnessed my mother being on this side of the patient, even just that recognition and empathy from one's physician can mean a lot to a patient and their family. So, I hope that we can all at least bring that awareness into our clinical encounters and try to offer that empathy when we sense those feelings. Dr. Lidia Schapira: Well, I'd like to thank you for sending us your story, and thank you very much for participating in this conversation. I deeply enjoyed it. Dr. Rebecca Snyder: Thank you, Lidia! I really appreciate being here. Dr. Lidia Schapira: Until next time, thank you for listening to this JCO's Cancer Stories: The Art of Oncology podcast. If you enjoyed what you heard today, don't forget to give us a rating or review on Apple podcasts or wherever you listen. While you're there, be sure to subscribe so you never miss an episode of JCO's Cancer Stories: The Art of Oncology Podcast. This is just one of many of ASCO's podcasts, you can find all of the shows at podcast.asco.org. 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 you 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.
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May 24, 2022 • 24min

Warm Companion

"Warm Companion," by Meaghann Weaver: a palliative care doctor shares her story of a gun-shy dog and a daring rescue. TRANSCRIPT Narrator: 'Warm Companion' by Meaghann S. Weaver, MD, MPH, Ph.D. We were introduced at the front desk of a small town diner. By the time we reached the parking lot, we had committed to cohabitation. I pulled over to a small town's sole restaurant. Standing at the long counter, I waited for a carry-out dinner for the long drive home from a rural hospice visit. As a closing weekend in hunting season, I was the only one in scrubs and a mask in a diner filled with camouflage and deer antler de´ cor. The guy next to me was loudly complaining to his hunting buddy how his new puppy was gun shy and let the birds go. "Good for nothing." I mumbled that as a pediatrician familiar with gun violence and firearm accidents, I'm also gun shy. He pointed to his truck and jokingly suggested, "Welp, maybe you'd be a better pal for that whelp." One look at those puppy eyes from the cargo bed, and I emptied my wallet, handed him my uneaten to-go-boxed dinner, and carried his pup to my car. "No more guns," I whispered as we hit the highway. She joined our little family at the onset of COVID-19, snuggling close to us in the midst of the pandemic's physical distancing. I had planned to name her Agape. Her first collar tag jingled with the idea of a universal, unconditional love that transcends and persists regardless of circumstances. My kindergarten-age daughter insisted on calling out "Lovey" as she followed the new pup, all paws, around the house. The name persisted until the puppy responded only to "Lovey." Her collar tag was soon replaced with the vernacular: Lovey. Lovey represents a bonded attachment, a security and safety, and a held comfort. She is Lovey. Lovey nuzzled into our relationships and roles. My dad added milkbones to his right back pocket since his left back pocket was already filled with peppermints and lemon drops for my daughter. Lovey quickly tripled my pedometer footsteps. She motivated me back into early morning jogging. She introduced us to new parks. She taught us persistence with tennis ball retrievals and a dogged perseverance for finding frisbees. Lovey wagged her tail at kind strangers with sureness of future friendship and was on guard and protective when needed. She mastered the Labrador lean, offering my shins a counterpressure under the telehealth tabletop. She reminded us of the power of instinct and interaction. She represented goodness. One chilly morning after a night shift, I took Lovey to visit a lake further than our usual landscape. Walking through tall grass with the harsh prairie winds whipping around us, Lovey suddenly started barking an unfamiliar howl. She wouldn't let me check her paws for nettles or fur for burrows as she frantically lunged toward the lake. Far off, I then saw what she witnessed. A lone ice fisher's dog had been walking on thin ice 60 feet from the edge, crashing through, while the angler stood sturdy. The ice fisher went to rescue his dog but instead also crashed through. They both thrashed and struggled in the freezing water. They gasped and clawed at the slippery, growing ice ring around them. Without a sense of locale or direction, I pinged 911 to my cell phone and tracked their 11-minute arrival. Racing to the lake edge, I yelled out that help was coming. I prayed for a protective bradycardia, fearing a hypothermic-induced arrythmia would kill sooner. If I entered the broken ice waters to reach them, we'd all just freeze together. Helpless. I tried to throw Lovey's leash to them. Useless. Without a rope and without ability to reach out, I felt "Good for Nothing." Except I was present. Fully present. I was bearing witness to suffering without shying away. I couldn't rescue. I could just remain. The presence of another human served as an antidote to aloneness. I instructed the fisherman to look at me. I asked him to trust me. I told him to protect his strength by stopping the struggle. Just be with me. Just hold on. I assured him that his dog knows how much he is trying to help. "Tell me about your pup." Teeth chattering, he told me about how they met. Then, a sacred silence. I asked if he wanted to keep talking. He told me about how he named her. Silence. He told me he rescued her, but he's pretty sure she rescued him. We talked about the reciprocity of such relationships. As the minutes dragged on, his breathing changed. I suggested, as I have done time and time and time again between covering COVID-19 comfort care night calls in New York during the pandemic surge to rural home visits during relentless variants, that we breathe together. As in palliative clinical practice, I heard myself telling him to trust his strength. I suggested he curl to protect his core. I found myself instructing him to protect his heart. Then, true to medicine's focus on what matters most in life, I reminded him to remember love, forgiveness, and peace and to truly trust his body. He rallied. He lifted his dog's back legs. The dog slippery-sprinted over to join Lovey in a victory jig. Downward dogs bowed. Paws pranced. Collars jingled. We heard the sirens. Rope and rescue floaties reached him. The Sherriff turned his back while I switched his bib overalls for my sweats and fleece. Without guidance or prompting, Lovey and her new-found canine friend covered the fisherman with their bodies. They covered his core and licked his face. Our faithful companions warmed him. They remained silent and still as he started to stir. Their patient presence and warmth brought healing. After a prolonged silence filled with just gentle presence, his chattering teeth started to form words. His dog barked in recognition of a familiar, favorite voice. Companioning represents sacred stillness, not frantic fixing. Companioning means being present to another's grief, pain, or suffering. Companioning represents profound presence rather than rescuing. A primary tenet of companioning is bearing witness to the struggles of others without shying away. As I tried to add warmth to the pile of pups, I thought about how we've all been walking on thin ice in medicine, especially during the pandemic. Companioning applies to contingency or crisis phase. Companioning has meant holding up the iPad for telehealth hospice goodbyes during visitor restrictions. Companioning has meant tirelessly advocating for vaccinations and masks without judgment or unkindness. Companioning has meant pivoting to telehealth to continue to caringly check in on patients with immune system vulnerabilities while protecting them from clinic exposures. Companioning has meant wiping the brow of a colleague when they can't reach past their protective layers. We haven't been able to rescue the curve or fix the surges. Still, companioning means being present for each other and our communities to offer healing warmth in a cold world. Dr. Lidia Schapira: Welcome to JCO's Cancer Stories: The Art of Oncology, brought to you by the ASCO Podcast Network. A collection of nine programs covering a range of educational and scientific content and offering enriching insight into the world of cancer care. You can find all of the shows, including this one at podcast.asco.org. I'm your host, Lidia Schapira, Associate Editor for Art of Oncology, and Professor of Medicine at Stanford University. And with me today is Dr. Meaghann Weaver, a lead regional ethicist at the National Center for Ethics in Health Care, and an adjunct associate professor at the University of Nebraska. We'll be discussing her Art of Oncology article, 'Warm Companion'. The views expressed in this podcast are those of the author and do not necessarily reflect the position or policy of the US Department of Veterans Affairs, the US government, or the National Center for Ethics in Health Care. Meaghann, welcome to our podcast. Dr. Meaghann Weaver: Thank you. It's a joy and privilege to be with you this morning. Dr. Lidia Schapira: So, tell me first a little bit about your writing process. How does a story present itself to you? When do you know that it's time to put it on paper or on screen? Dr. Meaghann Weaver: It's interesting the way that narrative medicine evolves in a really different way than research and summarizing data in written form. In many ways, I think of that as a cognitive process, where you can be planful and structured. Whereas narrative medicine, it occurs as a story that just has to be told. It's beating so profoundly in your heart, that even if you want to contain it, and hold it as personal, I think for me, it's really an uninhibited moment. So, funny enough, I tend to do research during day hours or very structured hours, whereas narrative medicine is very much waking up in the middle of the night saying, 'This has to pour out. I can't continue to contain the truths from this narrative.' Dr. Lidia Schapira: It's a lovely description. Tell me a little bit about how you decided to share with others? I totally understand the need to reflect and tell a story, but how do you decide what is private in what you want to share? Dr. Meaghann Weaver: I would say that in clinical experience, and even in ethics consults, there are so many stories that are quite profound, but are so intimate, are so personal, even if you de-identified them, they border on sacred and so those for me remain really untold. Those are held by the participants of the story. For me, it's this particular narrative in one of our staff meetings, we had a couple of extra minutes. And so, I just shared, you know, what had happened over the weekend. And my colleagues said, 'You have to write that.' And a number of them followed up and said, 'Have you written that? You need to write that.' So, in many ways, it's if the narrative resonates with others, in many ways, they think sharing can be selfless. It can be hard to share. But my colleagues really said, 'You might have a duty to share this one because it resonated with our experience and COVID.' Dr. Lidia Schapira: It's a lovely story. So, tell us the story of how you met Lovey? How does the pup become your family's own? And how Lovey led you to this moment that is so amazing that you describe so beautifully in your story? Your story, unlike many other narratives in the Art of Oncology, has so much suspense to it. I mean, the reader will hold their breath, to try to see how the story ends. Dr. Meaghann Weaver: Thank you. Well, I met Lovey in really spontaneous circumstances. I, as many during the pandemic, anticipated adding a family pet to our family, was starting to prepare, but Lovey in many ways was a little bit impulsive, because I met her where she seemed particularly vulnerable. And I just experienced a time of seeing her, seeing that she might have been in an environment that wasn't actually drawing out her strength. So, she wasn't living up to the hunting dog persona. And so, in her community, she was maybe perceived as not useful or not productive, that I was encountered her at the end of a hospice visit, and we know from oncology, we know from hospice, from palliative care, presence and being and really living into your strengths, like your core identity. So, I encountered her and noted that she's really gentle, and she might not be a hunting dog, but she would have such joy and contribution to the right community in the right setting. And so, in many ways, it was an impulsive attachment. And then she so quickly nuzzled right into our family and brought so much comfort and truly brought companionship, and she helped us to re-engage and live life with a deeper level of fullness. That's Lovey. Dr. Lidia Schapira: Sounds absolutely wonderful. How old is Lovey, now? Dr. Meaghann Weaver: She just turned two. Dr. Lidia Schapira: In your essay, you talk a lot about companionship. You also mentioned the concept of bearing witness to another's suffering or crisis. And you talk about presence. Can you tell us a little bit about these three concepts and how they came to you so clearly, as you reflected on this incident, and perhaps you should tell our listeners also, what actually happened, and what the story is about? Dr. Meaghann Weaver: So, the story is about after a particularly challenging night shift, I took Lovey for a walk at a lake which is of further distance from our usual geography, and it was deep winter, there was an ice fisherman out about 60 feet from the lake edge. And it's very common in our community for ice fishers and hunters to bring their dogs with them. It's just a partnership. This particular pup fell through the ice. Lovey and I were walking quite a distance from the lake and she just had this really impulsive shrieking. I thought she was wounded. She had this really strong instinct of another animal's injury or needing rescue. So, she was really pulling and lunging me. So, I followed her, actually pretty nervous because she was acting so out of character. I followed her and she brought me to the lake's edge, and then I saw the fisherman had also fallen through in his attempt to rescue his dog. They were too far out. I tried to throw her leash, but there was no way for me to rescue, which as you can relate in our calling in medicine, we're trained to rescue, we're trained to fix, to intervene, it felt so counter natural. It felt so counter to training. And so, just calling out connecting with him, trying to let him feel that I was really close, even though I was at quite a distance. I called for help. I pinged 911 to my phone. I had no idea really where I was other than somewhere very rural area like a frozen lake. So, I pinged them to my phone. I just continued to reassure him that help was coming. And I just asked him to stay connected with me. It was clear that his dog gave him such meaning, you know, the fact that he would sacrifice his safety to rescue his animal. So, I tried to engage him in narrative. And it seems what was most helpful for him was less when I asked about him as the fisherman or as a human and more when I asked about his dog, and how he was connecting him back to what mattered to him. And so, very long story short, he was able to rally just like we see at the end of life for many of our patients, this final rally, so he rallied, and lifted his dog who came to us, and then we had a really sweet reunion with his pup. So, the sheriff arrived, it took about 11 minutes, and I was quite concerned physiologically, whether we would sustain life in that time gap. So, the sheriff arrived; he was able to throw ropes and rescue floaties, and that patient was able to then be retrieved. He was pretty obtunded when he came out of the water, but was able to hold on to the rescue equipment and to just be then pulled to safety, then warmed really with our two dogs just laying on him licking him, very instinctually, they just covered him, and it was just their warmth and being present. I think that's what we see in medicine often when disease has progressed, and we are sort of past our biomedical ability to intervene. In many ways, there is still profound healing. And for me, in this narrative, the healing was human warmth and the presence of living beings, and companioning, remaining present, bearing witness to someone who is really struggling, bearing witness without thrashing around, feeling like the only help you could offer is fixing. I think that the story would have been more exciting if it were a palliative care doctor ethicist dives into freezing water, but we wouldn't have helped him. So, it's really saying, 'I'm gonna bear witness, stay with you, companion with you as part of your healing.' I think there's a message in there for medicine, too, staying with our patients. There's actually a narrative there too, because of course, in hypothermia, you need to change the person's clothing. And so, probably the humorous part of the story is the sheriff turning around and me putting the fisherman in my fleece and my scrubs, and me putting on his bib overalls. I think that's probably quite the visual. Dr. Lidia Schapira: I must say, I saw that. I didn't know what you looked like, but I could just imagine the scene. Tell me a little bit about that moment, when you have to do this cognitive switch from, 'I'm diving and I'm rescuing to I'm bearing witness and I'm present?' Dr. Meaghann Weaver: That's such a powerful cognitive switch because, in many ways, it's instinctual to fix and to rescue. So, I almost would say that is a practice that has to be in some ways predetermined. And so, I think it's a commitment and it takes practice outside of the clinic space to really say, 'My role in this patient's life is to help them ask the questions they need to ask, help them explore the answers without me forcing the answers upon them', and help them in some ways you could think establish the safety net that they need. So, foster that, without forcing it, without thinking my sense of rescue would be the same that would be most beneficial to them. So, I think that is really a practice that requires contemplation and commitment because the impulse is to rescue. The impulse is to fix, and so, it really takes strategizing. Dr. Lidia Schapira: Meaghann, I'm sure you've given this some thought, how would you have felt if the story had a different ending? If the sheriff didn't arrive in time? Dr. Meaghann Weaver: I tried to protect myself from thinking in that way. I think I would have experienced immense guilt, and I perceive it would be natural to feel that I then should have gone into the water even if I couldn't have made a difference. I anticipate that there would have been a significant weight. And so, it takes thinking in a logical way because my heart would have said, 'Well, just dive in and be with him.' And also, I think the emotive experience of guilt would have been really heavy. I thank you for asking. I think that's a courageous question and one that I've have to reflect on. Dr. Lidia Schapira: You've written about guilt before, so I know that you are certainly not shy in thinking about the emotional landscape of our work. But let me end this with a little bit more of a playful question. And that is about the pups here, the role that the dogs played because the dogs are all about instinct and impulse. We can't ask the dogs about their cognitive experience, but we can watch their behavior. And I was certainly moved, I laughed and felt this incredible energy and warmth when you describe both pups were on the body of the fisherman, warming him up. So, tell me a little bit about this bonding with dogs and using dogs both for therapy for oneself and therapy for others. Dr. Meaghann Weaver: Yes, it's amazing to me the way that our pups have a way of connecting with us and with our core self… Oops, my pup is participating. Connecting us with our core selves. I noticed even in my work, that the respite and the sense of connection that we have, with our animals, with our pups, there's something so instinctual and uninhibited about it. And I also think much of our work is so serious, but their playfulness, and then their unconditional and really uninhibited celebration, when we're sort of reunited after a long day or there's something, it's really hard to describe it just this profound feeling of warmth and of belonging, and companionship. Dr. Lidia Schapira: Well, thank you so much for the conversation today for this absolutely beautiful essay, for sending us your work, and for sharing this experience with the broader community of readers. Thank you, Meaghann! Dr. Meaghann Weaver: Thank you! I'm grateful and I do turn quickly when I receive the journal to this section. So, thank you, I find that it resonates with my head, my heart, and my spirit. So, thank you for fostering that. Dr. Lidia Schapira: You're very welcome! Until next time, thank you for listening to this JCO's Cancer Stories: The Art of Oncology podcast. If you enjoyed what you heard today, don't forget to give us a rating or review on Apple podcasts or wherever you listen. While you're there, be sure to subscribe so you never miss an episode of JCO's Cancer Stories: The Art of Oncology podcast. This is just one of many of ASCO's podcasts. You can find all of the shows at podcast.asco.org. 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.
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May 20, 2022 • 26min

Dose Painting

"Dose-Painting," by Shivani Sud: a resident creates visual narratives within two patients' dose clouds. TRANSCRIPT Narrator: 'Dose Painting' by Shivani Sud, MD. (10.1200/JCO.21.01524) When asked to describe radiation oncology, my first recollection is watching chart rounds as a medical student. Sitting along the conference room periphery, I observed as dosimetrists projected patients' scans, residents presented histories, and attending physicians reviewed treatment plans. Far from the usual hospital rounds with plans consisting of procedures, consults, and medication changes—here, treatment plans are scans overlaid with intricate colorful lines denoting the amount of radiation traversing internal structures to arrive at the target (ie, tumor) volume. This dose visualization is our primary method of conceptualizing and articulating radiotherapy treatments. Recent technological advances enable delivery of radiation with immense precision to the extent we dub some techniques as "dose painting."1 Starting with our planning scan consisting of computed tomography images of the patient in the treatment position, we delineate areas of tumor and likely microscopic disease to compose our target volumes. In collaboration with dosimetrists and physicists, we adjust various parameters including multileaf collimators—movable metal leaves that sculpt the x-ray beam as it departs the linear accelerator to enter the patient—and beam angles such that we cover the intended target with radiation while avoiding delicate neighboring organs. We evaluate and iteratively optimize our radiation plans and the resultant dose distribution. Balancing the correct radiation dose, treatment field size, and shape are critical for preventing recurrence, minimizing toxicity, and improving survival. At the first glance, our peer review reduces the patient to a spectrum of grayscale pictures a few millimeters thick as we scroll through their bodies searching for tumor and ask whether our colorful delineations will adequately treat the cancer. Controversial plans elicit the most discussion as we glean insights into patients' lives and decision making. Why this shorter course of radiation? His priority is quality of life and maximizing time at home. Why no concurrent systemic therapy? She is too frail for chemotherapy—we are escalating radiation dose as an attempt for more durable local control. Why are you sparing a sliver of the scalp? She fears children will tease her for balding. Answers live within a broader narrative. These rainbow-colored three-dimensional dose clouds represent the complex convergence of patient history, goals of care, humanity, medical judgment, and cautious control of our treatment medium—radiation. As a resident, I view the dose clouds denoted by the color wash of the computationally optimized radiation distributions through the lens of the patient-physician relationship—literally and figuratively. During late nights and unrushed moments, my mind drifts back to my favorite childhood pastime—spotting shapes in the clouds. This activity is a form of pareidolia—the human tendency to perceive meaningful imagery amid a random or ambiguous pattern. As a child with a sweet tooth, I pictured popcorn and cotton candy in the sky. Now, this manifestation of my imagination was centered on my most salient thoughts—caring for an older woman (Ms V) with lung cancer and a child (Lilly) with Ewing's sarcoma. I grappled with whether our treatment plans were adequate, too little or too much. I turned to painting to articulate my angst as art is part of how I reflect on complex situations. For both Ms V and Lilly, I traced the isodose lines defining the radiation dose distributions to maintain fidelity to the original radiation plan. I then folded those dose distributions into the visual narrative of the paintings to create a reflection of their journeys amid their dose clouds. Ms V (Figures 1 and 2) had countless admissions for chronic obstructive pulmonary disease, heart failure, valve replacements, and now cancer. Ms V longed for quality time until the sun sets. Her case was complex—she had an early-stage lung cancer, but because of multiple comorbidities, she was not a surgical candidate. She projected courage and resolve in conversations about her goals of care while accepting death as inevitable. We treated her with definitive intent linear accelerator-based stereotactic body radiation therapy. Months later, she died from a heart failure exacerbation. I was heart-broken and humbled. Ms V taught me that prognostication is an elusive art for physicians—I was naively optimistic about curing her early-stage lung cancer. She was pragmatic about embracing the trajectory of her comorbidities. As I scrolled through her treatment plan, the beams enveloped the tumor in warm tones denoting high dose as it floated through a sky of trapped air. I imagined her wishes for quality time expressed as colorful, vibrant brushstrokes of light emanating from a sun setting into a calm, reflective ocean overlaid on my target volume. Lilly (Figs 3 and 4) was a bald, spunky and vivacious four-year-old girl whom I met after multiple rounds of chemotherapy for a chest wall Ewing sarcoma. As we talked about radiation therapy, Lilly flapped her arms while proclaiming herself a butterfly. Weeks later during a status check, she cried in agony from radiation esophagitis. Her mother solemnly whispered "I wish I could take the pain instead of her." That evening as I was looking for a picture book for my niece, I came upon the story of a baby giraffe on quest to find his spots until one day while he slept, rays of sun shining through the leaves of a tree tanned his skin with perfect spots. Curiously, I searched for the evolutionary rationale for giraffe spots—they are a trait passed between mother and offspring with size and shape predicting fitness for survival. My mind wandered attempting to create meaning amid these random coincidences as I wrestled with uncertainties about how Lilly would fare after radiation. I sketched Lilly as a baby giraffe—her spots, much like the storybook, sculpted by leaves (of tungsten metal) distilling rays (of photons) to sizes and shapes reddening her skin but designed to improve her chance for survival, spots shared by a mother wishing to take her daughter's suffering upon herself. The painting's striking visual of mutually shared bold, whimsically colorful patterns inspired by the axial, coronal, and sagittal views of the radiation plan set against a stark dark matte background aimed to capture the vibrancy of the love I saw connecting Lilly to her mother and their resilience in the most trying times. Witnessing their journey underscored the permanence of the mother-child bond filled with tenderness and compassion that moved me as I was then caring for my own mother who was receiving radiation therapy. When my mother's radiation oncologist showed us her treatment plan, I was engulfed by the same questions. Is the dose and field size appropriate for tumor control? Will there be irreparable damage? Will her symptoms improve or get worse? Is this what she wants? I viewed her treatment plan through the lens of a meticulous radiation oncologist in training, but this time, I was sitting in the chair along the wall reserved for family members. Like the patients I care for every day, as we scrolled through the intricate colorful isodose lines, I trusted they were the optimal intersection between science (dose) and art of medicine (painting) we strive for as radiation oncologists. Dr. Lidia Schapira: Welcome to JCO's Cancer Stories: The Art of Oncology, brought to you by the ASCO Podcast Network, a collection of nine programs covering a range of educational and scientific content and offering enriching insight into the world of cancer care. You can find all of the shows, including this one at podcasts.asco.org. I'm your host Lidia Schapira, Associate Editor for Art of Oncology, and Professor of Medicine at Stanford. My guest today is Dr. Shivani Sud, a resident in radiation oncology at the University of North Carolina. We'll be discussing her Art of Oncology article, 'Dose Painting'. Our guest today has no disclosures. Shivani, welcome to our podcast. Dr. Shivani Sud: Thank you so much for having me. It's a pleasure to be here. Dr. Lidia Schapira: So, I'd like to start this by asking our authors to tell me what's on their reading list right now, or to recommend a book that has been interesting and inspiring to you that you read in the last year? Dr. Shivani Sud: That's a good question. I'll be completely honest, I've been a bit boring at the moment with copies of clinical essentials of radiation oncology, and a few of our other handbooks. Frankly, during the pandemic, and especially with current events, I think I've been more in the nonfiction realm, especially just trying to submerge myself in the news articles and the ground level journalism that's been coming out and so I would actually say that these days kind of a local newspaper and things of that nature have been a bit refreshing. Dr. Lidia Schapira: Let's turn to your essay and your art. You're very unusual in that you bring to us in your narrative, not only the beautiful narrative and written word, but also visual art. Have you always been a writer and a painter? Dr. Shivani Sud: I have enjoyed painting for a long time. It was one of those things that started by, I think I was just copying my sister, she once got an acrylic paint set, and she was painting on canvas. And there I was doodling something on paper. I was always one of those kids who couldn't help but try to fit the whole rainbow into a coloring book page, or any art assignment. And I think that as I went throughout school, and the multiple levels of training that we encounter, as physicians, that painting just became my outlet, whether it was expressing myself, decompressing, feeling like I was channeling my thoughts and my energy into something, while not necessarily kind of sitting idle with those thoughts. Dr. Lidia Schapira: Your essay helps those of us perhaps, who don't paint as a way of expressing ourselves to understand your process a little bit. And you start by saying that you've always enjoyed looking at shapes and finding connections. Can you talk to us a little bit about the way that you view shapes and find connections? And tell us how you see that in nature, and then in your work as a radiation oncologist? Dr. Shivani Sud: Certainly, I think a lot of this goes back to that word we mentioned, pareidolia, and this human tendency to want to find meaning in randomness. And so, that was that childhood memory where you're on the playground with your friends, and you're lying on a grassy hill, and you're looking up at the clouds, and somebody sees a bunny, and somebody sees popcorn. And then someone says, 'Well, it reminds me of cotton candy.' And so, I think as I then look forward to these late nights, these unrushed moments when frankly, you're maybe a little bit tired, maybe a little bit delirious, who knows, but you're looking at your work, you're seeing these shapes, you're looking at the plan, those memories of what the patient said was important, your abilities and limitations to control radiation dose, and seeing them merge together. And I think it was really that immersion of, here are these dose lines, they're not random. They reflect meaning, they reflect what I am trying to accomplish and what we as a team are trying to accomplish for this patient. And so that was really what gave rise to these visual narratives in trying to take the dose lines, take the patient's narrative, and essentially create that visual narrative within their dose clouds. Dr. Lidia Schapira: I found your essay so moving and so clear in helping somebody who is not a radiation oncologist think through all of the steps of the treatment planning and the delivery of the treatment, but what I appreciate so much about your writing is the humanity you brought into this. One of the lines I found so beautiful was when you're describing the scene of this older woman who has so many comorbidities and now is facing lung cancer, and you're trying to palliate and treat with your treatment. And you say, you imagine and I'm quoting you now, 'her wishes overlaid on my target volume'. Can you tell us a little bit about how you imagine the patient's wishes and aspirations as you are crafting a treatment plan and delivering that plan? Dr. Shivani Sud: It all starts with the consultation. I think oftentimes, even myself before I became a trainee in radiation oncology, I thought it would be a very impersonal field. I imagined just plans and computers and scans, and that it wasn't a field where you necessarily interfaced with patients as much as I learned that we do. And so, the consultation is an amazing opportunity to get to know the patient. You have reviewed their medical record, you've scrolled through their scans, and you started to think about how you want to treat things. And all of that comes into reality when you actually meet someone. You actually talk about what is important to them. Who did they come with? What does the person who was with them say about them? And what's important to them? How do they advocate for them? And so, a lot of it is that merger of this is what I've trained to know. This is what the guidelines say. This is what the studies say. And now I'm meeting you, and I have an opportunity to learn about you. So, how can I take this information? And how can we embrace it in what you want to come up with the best plan? Dr. Lidia Schapira: That's beautifully stated. You tell us in the narrative that this patient told you that she longed for a quality time until the sun sets, and then you drew or you painted this oil painting, right? It's an oil on canvas, that you titled 'Until the Sun Sets', and you said that you then use the art as a way of expressing yourself, but then also sharing it with others, perhaps gifting it to a loved one. Talk a little bit about how this art helps you to reflect, process, express, and then share? Dr. Shivani Sud: I think, for me, a lot of the expression has to do with both the patient's journey, as well as my journey here. I started out as an outsider. I didn't understand what these plans meant. How they came together. And then as a trainee, working with Ms. V, I was able to understand, how do we actually use radiation to give her a short course of treatment, so she can get back to that vibrant life that she was enjoying, that quality life that she wanted, until the sun sets? And in her case, especially, beyond just the radiation, she taught me so much about what we strive to do as providers and where our limitations are. So, I found myself very enthusiastic about treating this early-stage tumor. I had all the statistics about what the control rates were, and everything of that nature. I remember her being very pragmatic about her multiple comorbidities and whether or not she felt she would derive a lot of benefit from treatment. And indeed, in the end, she was right. You could argue there might not have been a lot of benefit from treatment, because she passed away, a few months after we treated her, from those other comorbidities. But I remember after she passed away, and I saw that chart notification, it made me rethink all of our conversations, and that was one of those moments where you pause and you say, 'What did she want? And what was I trying to achieve? And where is the overlap between the two of them?' And so, my target in the moment was that gross tumor volume. It was that nodule in the lung that I had circled, it was the hot spot in that dose cloud. And what I was trying to achieve for her was short treatment so she can get back to her day-to-day life. That meant I needed a hot dose in the center. I needed things to be cool and calm around the periphery. So, I didn't damage too much lung. And then I thought about this sunset, and there was this target volume. There was light because she was so light, so bright, so vibrant. And I had that sun setting into a calm ocean, not a turbulent one, to reflect her pragmatism, her ability to stay calm, cool, collected in the face of not only lung cancer but all of these other comorbidities. And so, really, it was meant to be 'What does she want? What is she stating? How do we accomplish it for her? And how do we put that forward in a visual narrative that someone else can understand and appreciate aside from, here are some colorful isodose lines that happened to look nice?' Dr. Lidia Schapira: I must say I find it very inspiring to hear you talk because you talk about radiation oncology, being a technical field and I hear in your voice, everything about connection and mission-driven work. So, I think it's beautiful. The idea is that you're sort of translating and applying what you hear from the human being who is bringing you this disease into your thinking and crafting your dose and your delivery. That's really very beautiful. I wonder if you can share with us a little bit about your comment about the importance of the caregiver story. And in the essay, you say that perhaps some of your response to your patients was also impacted by your experience as a caregiver for your mom when she was undergoing radiation. Can you share a little with the readers and listeners? Dr. Shivani Sud: I think this is part of the reason why Lily's situation and her journey resonated so closely with me. She and her mother were an inspirational duo, regardless, but I think there was this extra level of connection, as we took care of Lilly because my mother was about to start her radiation treatments herself. This is another one of those examples, where, as a trainee especially, it feels like you start off as an outsider, and then you're part of the system. And then here, I was, not necessarily, you know, I wasn't part of my mother's radiation treatment delivery team, but I was still a radiation oncologist in training. And here I was sitting there by her side, trusting the system that I was once an outsider to, and then was once part of, but from a different vantage point. And so that's kind of those shifts in where the chair is located. And in chart rounds, it was along the periphery for the medical students, and then you're sitting in the main seat as the radiation oncologist. And now you're sitting in the chair along the wall reserved for family members. I think the role of a caregiver is tremendously important in terms of caring for patients. First, of course, for the patient's well-being for them to have someone to speak with, at least that was the case with my mother. We would often talk about her symptoms, and what she was afraid of, what she wanted out of treatment, the parts of radiation that were scary and nerve-wracking to her. And it was interesting to now be on this cusp and, had her tumor arisen five years before, I wouldn't be able to speak both languages of daughter and radiation oncologist. But given the point in time, there were many moments where I could reassure her. And there were also many moments where, after I reassured her, I would then sit there and say, 'Oh, dear, is this actually going to work?' You have all this training, but then you kind of pause and you say, 'Well, do I believe it?' And you think about things a little bit differently, again, when you're not necessarily in the system, but you understand the system, but you're sitting in a different position. Dr. Lidia Schapira: You're clearly inside the system. Now, my final couple of questions are these, one is what motivated you to write and publish the story? Dr. Shivani Sud: The paintings themselves arose from seeing these visual narratives. And essentially the same way that a writer likes to put thoughts to paper, I wanted to put paint to canvas, because that was the way that I was going to remember this connection that I had made. And this was the best way that I would be able to share the connections that I had made with others. In terms of wanting to pen the story, part of it was giving light and continuity to these experiences of taking care of these two patients who had taught me so much and clearly struck a chord with me in terms of wanting to craft these paintings and to also share with others that there is humanity in our field, there is such a deeper connection that we make. And even though these computer-generated lines might seem so impersonal, and you see us scrolling through scans and things of that nature, there is very much a human connection, a human cause, and purpose behind all of that, and everything we do is centered around the patient. And this for me was just my way of showing a way in which I bring my mind, body, and soul to the work that I do. And take home this work and say, 'This is where it's a part of me.' Dr. Lidia Schapira: Have you shown your artwork? Dr. Shivani Sud: I have shown my artwork to a few of my co-residents. A few of my attendings have seen it as well, I haven't widely circulated it at this point in time. Dr. Lidia Schapira: Shivani, thank you so much for sending us your work, and please remember to keep your humanity about your work. It is inspiring. It is inspiring to hear you. It was really moving to read your essay and to appreciate your artwork. Thank you so much. Dr. Shivani Sud: Well, thank you so much for having me. Thank you for accepting the piece, for encouraging us to embrace our humanity in the work that we do, and for having the Art of Oncology section. It's a pleasure to be able to join. I really appreciate your taking the time to include me. Dr. Lidia Schapira: Until next time, thank you for listening to this JCO's Cancer Stories: The Art of Oncology podcast. If you enjoyed what you heard today, don't forget to give us a rating or review on Apple podcasts or wherever you listen. While you're there, be sure to subscribe so you never miss an episode of JCO's Cancer Stories: The Art of Oncology podcast. This is just one of many ASCO Podcasts. You can find all of the shows at podcast.asco.org. 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.
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May 10, 2022 • 24min

A Note of Gratitude

"A Note of Gratitude" by Austin J. Price: A senior resident honors his grandmother and expresses gratitude to a doctor who had a long lasting influence on him and his family. TRANSCRIPT Narrator: "A Note of Gratitude" by Austin J. Price, MD-MPH (10.1200/JCO.21.01781) Mary Ann Richards-Elbrader was many things. Born in rural Kansas in 1936, she was a product of the pre-War Depression Era. That fact, I am sure, had an impact on the type of person she would become—a hard worker to a fault and a fiercely loyal family woman. She was the mother of five, the grandmother to 13 including me, and a friend to all, rarely knowing a stranger. Only a high school graduate herself, she believed wholly in the value of education, something that no other person could ever take away. Owing to that belief, all of her children earned college degrees, something that made her immensely proud. She was quick to anger and even quicker to apologize. Devoutly faithful, she taught her children to believe in something greater than themselves. On a more lighthearted note, she was known to lay back in the recliner after a hard day with a stiffly poured vodka. I recall the kindness ever present in her eyes, seen through large, clunky, 80's style frames and the lines on her face that easily divulged to the world she was someone who loved to laugh. The fact that she became a patient with cancer in 1995 is quite likely the least interesting thing about her. My grandmother's journey with cancer began, as many things did for her, in the service of others. She was a frequent blood donor. After giving blood once, she was found to be anemic and instructed to see her primary care doctor. The diagnosis came swiftly— colorectal cancer. From what I have been told, the goal initially was cure. I was very young and hardly able to grasp the nuances of her clinical course. Nonetheless, I know she had surgery and chemotherapy, and for a while after that, everything seemed fine. My mother and aunts recall a discussion when there was mention of age spots in her liver that would be monitored. That probably seemed harmless at the time, but it sounds so ominous to me now. Indeed after a 1.5-year remission, my grandmother experienced a roaring recurrence, this time in the liver. As tragic as it was, I share these details merely as a prelude to something wonderful. It was 1998, and my grandmother found herself seeking a second opinion at the University of Nebraska from a medical oncologist named Dr Tempero. As my family recalls, there was a clinical trial for patients with colorectal cancer metastatic to the liver ongoing at that time. My grandmother initially qualified but was soon disqualified for medical reasons. Despite that, our entire family quickly came to thoroughly appreciate this oncologist. What it was about her that resonated so deeply is difficult to express in words. In my mother's terms, it was her confident, no nonsense, but never cold, demeanor that provided assurance that she knew her stuff while still having her patients' best interests at heart. She was also very honest from the outset in a compassionate, preparatory way, without becoming bleak. Perhaps most striking, my mother recalls, was their last meeting in Omaha, when she explained that there was no more she could do from a medical prospective. There were tears in her eyes, but she did not cry. She exuded both empathy and resolve, which made her more human but no less professional. My grandmother succumbed to cancer on September 20, 1999. I was 8 years old. I never spoke to her specifically about Dr Tempero, but I remember hearing stories about that doctor in Omaha who was so acutely aware of the human experience. A decade later, I was about to start my freshman year of college. I had always been reasonably smart, fairly ambitious, and done well in school. However, as an 18-year-old, I shall admit that I was more preoccupied with the social aspects of college than I was with what might happen in 10 years. Slowly, I became more interested in the prospect of going on to medical school. Much of my early childhood had been fraught with my grandmother's illness and I recalled the various roles physicians had played in her life. My mother always told me, "If you are going to be a doctor, be like Dr Tempero." I realized early on becoming such a physician would require much more than good grades and perseverance; it would require a constant commitment to being present, humble, and empathetic, without losing the confidence that allowed others to find comfort and value in my assessments. Ultimately, I decided that was a challenge I wanted and needed to pursue. With the unending support of my family and friends, I got into medical school and graduated in May 2019. I am now an internal medicine resident in San Francisco. My residency experience has been greatly different from what I anticipated. As the COVID-19 pandemic descended on our hospital, I found myself as an intern charged with facilitating end-of-life discussions through FaceTime, fully clad in personal protective equipment. Continually, I had to explain to families of the critically ill why they could not visit their loved ones. There was no instruction manual on how to have such conversations, but I know every day I channeled what I had garnered from my own family's experiences with the health care system. I am unsure if I succeeded in the ways that Dr Tempero did, but I have never stopped trying. In December 2020, I was triaging patients from the emergency department. While gathering the history on one patient, I asked "who is your oncologist?" When he replied, "Dr Tempero," I froze. Surely it could not be the same doctor, the same one I had heard about since I was 8 years old? The one whose unique abilities I would always tried to emulate? When I left the room, it did not take much time on Google to realize it was. I shared portions of this story with my patient, who was extremely complimentary of her. That evening, when I got home, I called my mother to share this truly cathartic experience. Ultimately, it was she who implored me to personally reach out. I sat down at my desk and wrote her a note of gratitude. The following day I got an email notification while at work. I waited until I had a few minutes to read her response in privacy: Dear Austin, Your letter is, without a doubt, the most touching letter I have ever received. I know how busy you must be right now, and I was doubly honored to know that you took the time to write this thoughtful message. Thank you from the bottom of my heart. I have had the privilege of helping so many patients over the years and each one becomes a gift. I may not be able to turn the course of their disease but I can always make the journey easier. On a Wednesday evening in early May 2021, a little over 23 years after she was my grandmother's doctor in Omaha, I met Dr Tempero for the first time. I joined her and her husband at their apartment in San Francisco for a glass of wine. We discussed medicine, our mutual love of travel, and of course the unique situation that precipitated our meeting. I could easily perceive the qualities my family had always admired about her. She was interested in my story and my goals, but yet forthcoming about her life, family, and career. Her persona was welcoming, but yet demanded respect. Two hours later, she walked me downstairs and waited until my Uber arrived at her door. As I rode across the city, I contemplated the miraculousness of these events. I wished, as I always will, that I had more memories of my grandmother that did not center upon her illness, but the reality is I do not. What I do have is the memory of this encounter that has left me with a sense of inner peace and optimism, reassured that I am exactly where I am meant to be. I write this in gratitude to a doctor, who had no way of knowing her kindnesses would have such lasting influence. Of course, I also hope to honor my grandmother's legacy. I know she would be honored to see how her own misfortune somehow managed to be the genesis of such positivity in my life. I believe she would also challenge us all, as do I, to be like that doctor in Omaha. Dr. Lidia Schapira: Welcome to JCO's Cancer Stories: The Art of Oncology, brought to you by the ASCO Podcast Network, a collection of 9 programs covering a range of educational and scientific content and offering enriching insight into the world of cancer care. You can find all of the shows including this one at podcast.asco.org. I'm your host Lidia Schapira, Associate Editor for Art of Oncology and Professor of Medicine at Stanford University. With me today is Dr. Austin Price, a senior resident in internal medicine at California Pacific Medical Center, soon to be an infectious disease fellow at the University of Kansas. We'll be discussing his Art of Oncology article, "A Note of Gratitude". Our guest has no disclosures. Austin, welcome to our podcast. Dr. Austin Price: Thank you very much. Thanks for having me. I'm happy to be here. Dr. Lidia Schapira: Let me start by asking if you are, in addition to a writer, also an avid reader? Dr. Austin Price: Yes, in the past at least I have been somewhat stymied by going into residency, but in the past, I liked to read a lot. Dr. Lidia Schapira: So, tell me a little bit about your past readings and maybe favorite authors or books, something you'd like to share with our listeners. Dr. Austin Price: I like to read about medical history. And so, one of my favorite books actually is by Dr. Paul Offit, and it talks about the early days of vaccines and how there was, I think it's called The Cutter Incident, but it's a great book. I may be misquoting the actual name, but great book. When I was in Baltimore, and doing my master's, he gave some guest lectures. And that's where I became acquainted with some of his work, I like reading that. So, those are the kinds of things that I really enjoy. And then I think, of course, I have always really enjoyed F. Scott Fitzgerald, even from high school, and Hemingway. Dr. Lidia Schapira: Very classically trained. Tell me a little bit about writing. Writing is a way of sharing an experience or perhaps processing a difficult encounter with a patient, is that something that you routinely do or have thought of? Dr. Austin Price: Yeah, it's definitely become something that's been more robust as I've gone through residency. I think part of that certainly had to do with the pandemic, and just not being able to be as close with people and have those personal relationships. And I found myself kind of cut off, maybe from a support system that I would have otherwise had, being in California with most of my friends and family in the Midwest. And so, I used writing as a way to kind of compartmentalize my feelings and my interactions with patients and to check in with myself. And I find that it's therapeutic and also enjoyable. Dr. Lidia Schapira: That's fantastic. Let's talk about the essay that you submitted and we published in Art of Oncology, which is a way of honoring the memory of your grandmother, who had cancer when you were a child, and also talks about your sense of vocation and this ideal that was held up to you by your family of aspiring to be as empathic and wise, as a doctor, who is an oncologist who helped your grandmother. Let's start a little bit with your grandmother's illness and how you remember that now that you are a physician. Dr. Austin Price: Yeah, certainly. I mean, I just remember as a child, her getting very sick, and finding out that she had cancer, and knowing that that was a bad thing, but not really knowing any of the details of it. As it turned out, she had colorectal cancer, and had surgery, for a short time she seemed okay. And then she got sick again, this time with metastatic disease to the liver. And of course, she was very sick then and ended up seeking out a second opinion from an oncologist who becomes the person in the story that I write about, in Omaha. At that time, there really wasn't anything that could be done to save her life, essentially. But the interactions that they had were very impactful to both her and the rest of our family. So much so that all through my life, my family members said, if you want to become a doctor, which I thought kind of early on, I did, that I should be like this particular person, Dr. Tempero. And so, she had just always been this kind of person on a pedestal, if you will. Dr. Lidia Schapira: Let's talk a little bit about the impact that Dr. Tempero and her consultation had on your family. Can you tell me a little bit more about how they talked about that particular meeting? Many of us who are in oncology and have been for a long time often talk about the fact that there can be a therapeutic relationship between the oncologist and the patient and the family that can actually help during difficult times and even through bereavement. But it's so interesting to me to hear you speak about it from the perspective of a family member. Tell me a little bit about how that relationship impacted the way the family understood the illness and how they went through their loss? Dr. Austin Price: I definitely think that there was a therapeutic relationship established. And I think in a way, Dr. Tempero managed to be preparatory in the sense that she knew that the outcome was likely not going to be good. I think she did that without ever being bleak or ever losing hope, in doing so she really kind of helped, in her own way, move us slowly towards accepting reality, and then learning how to move forward and enjoy the time that we had left together. I think all of my mom's siblings remember her in the same way, they really trusted her in such a robust way that her assessment that there really wasn't anything else medically that could be done, really helped them to come to terms with it and to refocus their goals, and those goals being to spend as much quality time with my grandmother that they could. Dr. Lidia Schapira: And as you've gone through your medical training, I imagine that they'll have to dangle this idea of this ideal doctor in front of you more than once. How have you interpreted or internalized this aspiration to also be wise, empathic and so kind to your patients? Dr. Austin Price: Yeah, it's definitely something that my mother in particular is always reminding me to do, because it's not always easy, as we all know. And there are times when I'm frustrated and tired and all those sorts of things. So, she and I've had many conversations where I'm maybe lamenting about feeling overworked or this or that. And she's always reminding me to be present and to realize that, although I'm tired that I'm oftentimes interfacing with people at bad points in their life. So, I always try to keep that at the forefront of my mind and try to decompress before each patient interaction, in hopes that I can be at least to some degree like Dr. Tempero was for my family. I'm sure that I don't always succeed in the ways that she did, but I hope that I do most of the time. Dr. Lidia Schapira: I assume Dr. Tempero would reassure you that even she may have a bad day or a bad hour in a day. Your essay has a moment of suspense and a twist in the plot when you find yourself now as a physician in an emergency room looking after a patient who tells you that their oncologist is none other than Dr. Tempero. Tell us a little bit about what that felt like? Dr. Austin Price: Well, I mean, it was just altogether shocking, honestly, because I had never met her and I really had never even Googled her name in the past. She was just always this person that my mother talked about so much. And then I had come to a kind of honor but I assumed for all I knew that she was still in Omaha. And so, when I heard this name, I thought, well, how many oncologists named Dr. Tempero are? Well, there's probably more than just her, but I immediately left the room and started to Google and realized, just quickly, that it was her or that I assumed that it was because she had done her training in Omaha at the University of Nebraska. It was shocking and emotional too, I will say. I immediately remember texting my mom and being like, oh my gosh, this patient just told me that Dr. Tempero was their oncologist. And I have to go back in there and finish the assessment because I kind of had to leave the room to just decompress a little. Yeah, it was a wonderful feeling and also just one of those moments where you're just like, life is so interesting in the way that you come into contact with people and in situations that are just so unique. Dr. Lidia Schapira: And then you reached out to her? Dr. Austin Price: I did. Yeah, my mom told me, she said, she may not have time to get back to you about this but you should at least reach out and explain how this made you feel. And thank her for the way that she treated our family and thanked her for the ways in which she or the idea of her has kind of impacted the type of physician that you aspire to be. Dr. Lidia Schapira: So, you wrote to her, and she wrote you back. What was that like and what happened after that? Dr. Austin Price: Well, I just remember being shocked that she wrote back so quickly. I know that she's incredibly busy. And so, I was very happy that she'd written back so quickly. Honestly, when it was written, this all happened at Christmas time. So, I wasn't able to be there because of COVID and working through the holidays. It was just the first time in 30 years that my mom hadn't seen me for the holidays. So, she was emotional about that. And so, getting to read Dr. Tempero's response to the family over FaceTime on Christmas, really was kind of like the best gift that they could have gotten. They really enjoyed it. That kind of helped to stifle the blow a little bit of me not being able to be there for the first time. Dr. Lidia Schapira: I'm just getting teary just thinking about that scene of you're reading this message to the family over FaceTime, and then talking Dr. Tempero invited you to meet her, and you had a long conversation, tell us a little bit or share with us what you feel is appropriate so that we can understand how important that reunion was for both of you? Dr. Austin Price: Yeah, sure. From the first response email, she said, 'I would like for us to get together and for us to meet in person when it's safe to do so', because when this interaction initially happened, none of us had been vaccinated yet, and so we're still in the throes of COVID and still petrified and all those things. And so, once we had been vaccinated, I reached out to her and said, I actually have started to write this essay, and I just wanted to know your thoughts on it. And she read it and she said, and this was many iterations ago when it wasn't as good as I think it is now, but she was like, 'Oh, I'm very much in support of this and I'm very honored, and by the way, we're vaccinated now and it's time for us to finally meet.' So, we did. It was great. I met her and her husband at their apartment in Mission Bay in San Francisco. We just had a lovely evening, had a glass of wine, some hors d'oeuvres, and just talked about this unique situation that had brought us together, and also talked a lot about my life and what I want to do in my career and my future. She was more interested in me than sharing so much about her life, but was very forthcoming when I would ask her questions as well, then also just had this kind of commanding aura, but welcoming at the same time, just very likable. I don't know how to explain it, other than that it was amazing and I was so thrilled to experience it. Dr. Lidia Schapira: I think you've explained it very well. It's a beautiful story for us to read, for all of us who have been in oncology for all these years, and those who are just starting, it's really inspiring. We think a lot about mentoring our students or junior faculty, but the idea that we in our clinical roles, can also have sort of in a way an indirect mentorship, relationship with or an influence with other young members of the families is really beautiful and moving. I thank you so much for having sent it to us and for sharing that experience. Is there something else, Austin, that you would like our readers and listeners to know about the essay itself, your family, or the intention that you had that brought you to not only write but share your writing so publicly? Dr. Austin Price: Yeah, I hope to honor my grandmother, because I think it's been interesting, this experience brought me a lot of joy, and I think it brought our family a lot of joy. The fact that that came from such a sad place and sad reality, I think is really great. For clinicians, it's just really important to realize how far-reaching our interactions with patients can be because we are seeing them, oftentimes, really in bad times of their lives, times that they're going to remember for a long time. And so, we can then be remembered in kind of good ways and bad. I think it's so unique in the situation that in an interaction that Dr. Tempero had with my family, nearly a quarter-century ago, it only took the mention of her name, to bring back this whole flood of memories and spawn all of this. I think that's really cool and something that we should always be cognizant of. We have very far-reaching impacts for our patients. I just think that that's cool, and a good thing to be reminded of. Dr. Lidia Schapira: I think it's very cool too and I thank you so much, Austin, for sharing your essay and for taking part in this conversation. Dr. Austin Price: Thank you for having me. Dr. Lidia Schapira: Until next time, thank you for listening to this JCO's Cancer Stories: The Art of Oncology Podcast. If you enjoyed what you heard today, don't forget to give us a rating or review on Apple podcasts or wherever you listen. While you're there, be sure to subscribe so you never miss an episode of JCO's Cancer Stories: The Art of Oncology Podcast. This is just one of many ASCOs podcasts. You can find all of the shows at podcast.asco.org 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.
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Apr 26, 2022 • 17min

Questions for the Oncologist

"Questions for the Oncologist," by Barry Meisenberg: an oncologist struggles to answer a patient's "Why me?" question. Transcript Narrator: Questions for the Oncologist by Barry R. Meisenberg, MD (10.1200/JCO.22.00158) Go ahead, ask me anything. Decades of meeting beseeching eyes has prepared me. Ask me anything except that one thing. That one thing that neither colleagues nor study has helped me comprehend. Ask me instead about prognosis; I will be honest, but gentle. Ask me about side effects; I will use a small spoon so as not to overfill your vessel. Unfold your notebook. Ask me anything: "-how many cases like mine have you seen before? -what is the nectar of the bone marrow? -what (and how) should I tell the children? -is it wise to lay in the sun? -is it safe to have sex? -should I get the vaccine? -what's next if this doesn't work? -what if it were your wife?" Go ahead, ask me anything. But please, don't ask me that one thing. Don't ask, "why me?" You wouldn't like the answer. I don't. I could fill your notebook with a tale of random errors in the genes. Tiny rivulets of mutation that flow into a tumultuous river. But, I don't think of them as errors. Rather, they are Nature's engine of biodiversity. Individuals suffer, so that species survive. "Bad luck" is a second-rate explanation, I know. So please, don't ask me that one thing. Search for a better answer within, as I have. Unsuccessfully, so far. Dr. Lidia Schapira: Welcome to JCOs Cancer Stories: The Art of Oncology brought to you by the ASCO Podcast Network, a collection of nine programs covering a range of educational and scientific content and offering enriching insight into the world of cancer care. You can find all of the shows including this one at podcast.asco.org. I'm your host, Lidia Schapira. And with me today is Dr. Barry Meisenberg, Chair of Medicine and Director of Academic Affairs at Luminous Health. We'll be discussing his Art of Oncology article: Questions for the Oncologist. Our guest has no disclosures. Barry, welcome to our podcast. Dr. Barry Meisenberg: Good morning. Thank you very much. Dr. Lidia Schapira: It's a pleasure to have you. And before we start to talk about your poem, and the reason for your wanting to share this with a broad readership, mostly of Clinical Oncologists, let me start by asking if you are a poet and if you often write to reflect on your experiences as a physician, or for other reasons? Dr. Barry Meisenberg: Well, I will never give myself that label of poet. I have written several, what I would call reflections on what it is to be an oncologist, which this section of the JCO covers so well. Sometimes I've submitted work and said it was a poem and the editor said, 'No, this is a vignette.' Another time I thought it was a narrative and someone said, 'We liked your poem.' So, increasingly, I've entered this area reflecting a career's worth of introspective thoughts about what it is we do. Dr. Lidia Schapira: So let me ask you, given your very particular vantage and your experience, why do you think it's important for us to write and read reflections? What does narrative give us as physicians, as cancer doctors? Dr. Barry Meisenberg: Well, I think it gives us the other parts of our brain and the other parts of our personality as humans. The most humanistic of all the sciences is medicine. We can't neglect that. Mostly for our own health. But also, I think it makes us better physicians when we think about what we're doing. You know I think it was a physician author, who said that we walk around in the midst of stories. Every one of our patients has a story, sometimes multiple stories, and if we miss that, and don't really capture that, then we're just sort of functionaries. Dr. Lidia Schapira: Such an important thought. There's definitely plot. There are characters. There's the scenery. There's all of this very rich life and human content and I couldn't agree with you more. So, before I ask about this particular essay, what are you reading now or what have you read in the last year that you would recommend to your colleagues? Dr. Barry Meisenberg: Well, it's interesting you say that because, recording here in April of 2022, I've talked to many of my neighbors about their pandemic hobbies, both medical and nonmedical, and they're, you know, learning to bake, reteaching the piano, and working on developing their rhomboids. I've been doing a deep dive into the history of other pandemics. I may be little obsessive, but I've been reading about pandemics throughout history, and just appreciating the fact that human nature hasn't changed very much, nor has medical behavior. So, in Defoe's book, I think it's called Journal of a Plague Year, which by the way, is not history, is a fictional journal but based on reality. We have the same sort of medical charlatanism. We have false hopes. We have people trying to beat the quarantine for their own good. At the same time, we have just public-oriented behavior as well, feeding those who couldn't be fed or who would become orphaned by the plague. The same thing is true of the 14th-century plague. It's just remarkable how little we've changed as a species, all the behaviors on display today, both good and bad, were on display then. And so, I've been reading quite a bit about pandemics. Dr. Lidia Schapira: It's so interesting. Now, with that, let's focus on your beautiful poem, the question that you can't answer after all your scientific work and after your decades of clinical experience, "Why me?". Tell us a little bit about what inspired this poem that I found so moving, and I'm not a great reader of poetry. But this one message was so clear that I think most of our readers will understand the sentiment. What inspired you to write it? Dr. Barry Meisenberg: Well, I woke up with this one. Sometimes that happens, you wake up with a poem that is nearly fully formed, or a narrative is nearly fully formed in your mind. Although I did get some excellent suggestions from my reviewers that I do appreciate. And I realized only after it was on paper, that seven years ago, I wrote a piece for a different oncology journal about this issue of random chance. And you may remember, in 2015, there was an article, or a science magazine published an article by Thomas Heti and Bert Vogelstein about their mathematical calculations of errors in stem cell division. They didn't do any new experiments. They accumulate what was already known, and they were able to correlate that with the incidence of cancer from the cancer databases. And their conclusions were, when stem cells make random errors, there's more likely to be cancer. Now, they didn't cover every type of cancer. They covered several. And they came up with this idea that cancer is stochastic, that is a random process. Now, stochastic is not a poetic word. And so, we didn't use it in the poem, but random, and that was covered extensively in the New York Times and other media, and a big debate about what it meant. So, I wrote an essay about that, and I realized it's been on my mind all this time, and whether it's a helpful notion or a harmful notion. Helpful in that patients can understand you didn't do anything to give yourself cancer, despite all the media noise about that, but harmful, potentially harmful, in this idea that maybe my life doesn't have meaning if this is just a random process. And so, I talk to patients about this when appropriate, because many of them have thought about it. So, it's sort of been on my mind since this article I wrote in 2015. And I must say, it disturbs me that I don't have a good way of explaining that or helping patients overcome this. Dr. Lidia Schapira: So, when a person asks you why me in some way, I mean, you, first of all, you tell us that you have answers for most of the other questions, what is my prognosis? You can answer. How do I tell the children? You can answer. Is it safe to have sex? You can answer. But the "why me" question is still with you and still troubles you. What is it, in your view, that a person is really asking you? What is the question behind the question when they say 'why me?' Dr. Barry Meisenberg: Well, that is the question. And then I think what they're saying is what does my life mean? Yeah, if the answer to Dr. Vogelstein is correct, that it's stochastic, doesn't mean my life doesn't have a meaning. I hope people wouldn't draw that conclusion. So, random things happen to people, both nice people, and mean people all the time. I remember when I was in New York doing a year of research at Sloan Kettering, there was a helicopter accident, and it didn't just kill the people in the helicopter, but a piece of the blade broke off and spun out over Manhattan, killing someone who was about to walk into a retail store, totally random. It had an impact on me in how all our lives hang by a thread, or it can, and cancer is like that. Dr. Lidia Schapira: What I hear in the "why me" question is also sort of a plea for, please reassure me and keep me safe, because this happened, and you have no explanation, I have no explanation. So, it's interesting that you talk about life's meaning. I see it more as a cry for help. If I can't deal with the uncertainty and the chaos of the universe. Dr. Barry Meisenberg: That's an excellent perspective. And you may well be right, at least for many people. It's almost like a real issue of faith and religion, or more faith and religion. When I say in the piece, 'you have to look inside for that answer, why me and what your life means?' Yeah, people ask questions for a reason. Some of it is just fact downloading, the risk of mucositis, how to treat mucositis, and so on. But other, the more important questions are these. Dr. Lidia Schapira: And that's one of the beauties, I think, of poetry and why we love to publish great poems because it's almost like a bit of a Rorschach too, right? You can read into it, you can interpret, you can use a poem as a way of exploring an important topic, and bringing perhaps to the surface some of the questions that you also deal with, as a human, instead of only your skill, as an oncologist or as a physician used to counseling people. Dr. Barry Meisenberg: I think that is one of the values of poetry. I run a program here at this health system that we call the Diastole Hour because it's important for relaxation. You can't live your whole life in systole. That's the message. And we use poetry a lot, mostly written by patients about their medical experiences, sometimes written by doctors about what it means to be a doctor or be a better doctor. And then, of course, some art that covers medical topics. And the whole goal is to train that other part of our brain to make us better at the business part of being a doctor, and I think the two are related. Dr. Lidia Schapira: Do you read poetry with your fellows or with your trainees or junior faculty? How do you incorporate this kind of thinking in their professional life? How do you use it to build a community? Dr. Barry Meisenberg: Well, that's a great point. I wish we could do more. So, I read some poetry. I am not trained in it and I tend to look for poems that one doesn't need to be an expert in the classics to understand and we use them at this event I've told you about. But also, I've been known to sneak them into Grand Rounds presentations and other venues, trying to make people pause and think a little bit about it. There's some wonderful poetry about the physician experience, for sure. And I sort of collect them. Dr. Lidia Schapira: What are some of your favorite pieces? Dr. Barry Meisenberg: There's a neurologist named Ginsburg, who has written, I remember one poem, in particular, called "Line Drive". And it's about a man, presumably, based on a true story, who is explaining to someone their brain tumor anatomy during a hospital visit, and pointing at shadows, but recognizes that he doesn't actually do any touching. He doesn't enter their lives. He doesn't answer all their questions like the one we just talked about. And then he's driving home, and he stops at a little league Park and watches some boys play baseball. And one of the boys is struck by a line drive. And he's so moved, by the way, his teammates gather around him and offer support and touch him and help him that he drives back to the hospital to redo the consultation he had just finished doing, but this time with the touching. I thought that was a wonderful poem. Dr. Lidia Schapira: It's an amazing poem. Dr. Barry Meisenberg: I read that poem in Abu Dhabi, actually, to an audience, few of whom knew baseball, so I sort of had to explain it to an audience of oncology professionals. I might have missed my mark, I don't know, but I wanted them to understand certainly the importance of entering patients' lives. Dr. Lidia Schapira: Have you always felt this way about using narrative and poetry as a means of reflection, self-expression, and dialogue? Or is it something you came to later in your life as a more mature professional? Dr. Barry Meisenberg: Definitely the latter. I mean, I was fortunate in that I had good cultural capital growing up, but I didn't really incorporate it into my other life, my professional life until I'd say the last 10 years or 15. I've always been an admirer of Shakespeare, by the way, he wrote about the plague a little bit too, indirectly. And then one time I actually wrote an essay about this: I was given a poem by a patient, who was from Ireland and this is sort of like the national poet of Ireland. And it was his way of telling me, he didn't want any treatment. And the poem is about loss and lamentation that accumulates through life, and all his friends were in the graveyard. He wasn't interested in therapies that are designed to induce a response rate. He didn't want any treatment. The way he communicated that was through a poem. And I began to understand that really in a more realistic way that poem can do that. Dr. Lidia Schapira: Well, thank you so much for your insights. It's been a wonderful conversation. Is there something else you would like to tell our listeners and perhaps even a thought for future readers of the poem? Dr. Barry Meisenberg: By the way, I should say that the name of that poem I just referred to is called "Oft, in a Stilly Night". It's the first line of an Irish folk song. But I would hope people take the time to indulge. Many medical journals have sections like this, they're usually short. And I will tell you, that's the first thing I read in these medical journals. I hope people will follow that pattern. Dr. Lidia Schapira: Thank you so much, Barry. It's been a lovely conversation. Thank you for your work, and thanks to the readers. And more next episode of Art of Oncology. Until next time, thank you for listening to this JCOs Cancer Stories: The Art of Oncology Podcast. If you enjoyed what you heard today, don't forget to give us a rating or review on Apple podcasts or wherever you listen. While you're there, be sure to subscribe so you never miss an episode of JCOs Cancer Stories: The Art of Oncology Podcast. This is just one of many ASCOs podcasts. You can find all of the shows at podcast.asco.org. 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 or service organization, activity or therapy should not be construed as an ASCO endorsement.

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