JCO's Cancer Stories: The Art of Oncology podcast features stories, dialogue, and personal reflections that explore the experience of living with cancer or caring for people with cancer, hosted by Dr. Lidia Schapira.
Guilt and Gratitude: Staying in Touch After Cancer Treatment
Listen to ASCO’s Journal of Clinical Oncology essay, “Guilt and Gratitude,” by Dr. Ilana Hellmann, attending physician at Meir Medical Center in Israel. The essay is followed by an interview with Hellmann and host Dr. Lidia Schapira. Hellmann explores the guilt surrounding the toxic consequences of chemotherapy and her gratitude for the patients who continue to connect with their physicians, even after treatment.
The interview starts at 06:15
Narrator: Guilt and Gratitude, by Ilana Hellmann, MBBCh (10.1200/JCO.22.02000)
It was the end of a long day in clinic. There was a knock on the door to my office and my assistant’s head appeared: “Avi called and asked for an appointment.” The look on her face mirrored the thought that immediately went through my mind: That cannot be good. I asked her to fit him in to one of my clinics in the next few days.
I had first met Avi about 5 years previously. He was then a 29-year-old computer programmer and recently married to Talia, an artist. He was tall, skinny and stressed. She was short, stout and happy, an eternal optimist. They had no children. He had had an irritating cough, then developed night sweats and by the time he was diagnosed, he had advanced stage Hodgkin lymphoma: stage IVB with all the poor prognostic factors on the list.
He needed treatment quickly. We planned to give him the escalated bleomycin, etoposide, doxorubicin, cyclophosphamide, vincristine, procarbazine, and prednisone protocol-nasty stuff, with lots of side effects, but with good results. I explained it all to Avi and Talia. Aside from all the usual suspects: hair loss, nausea, pulmonary and cardiac toxicity, bone marrow suppression, and secondary malignancies, there are high rates of infertility, especially in males. We sent Avi to collect sperm samples before starting treatment, and despite numerous valiant efforts, his samples were all of poor quality. There was nothing there that could be used in the future.
His treatment course was not easy. The side effects were, from my point of view, mild. He had no life-threatening infections and no admissions because of side effects. But for Avi, it was awful. He described feeling like being run over by a truck. He stopped working, and things were strained between Avi and Talia. She found it very difficult to deal with his constantly long face, and he could not stand her persistent optimism. At one point, I remember a conversation close to the end of his treatment. I said something about how we were nearly there, to which he replied, “I started this treatment when I was young and now I am old.”
He finished his chemotherapy and thankfully went into complete remission. I breathed a sigh of relief and smiled at Talia, both she and I thinking that now Avi would recover. Months went by and physically, Avi recovered. He went back to work and started exercising again. Then as the months turned into a year and then another year, testing revealed what was initially feared. Avi was infertile. The conversations in my office between Avi and Talia were tense and painful. Talia wanted to use a sperm donor. She wanted a child of her own and the experience of pregnancy and birth. Avi felt that he could not be father to a child that was biologically hers but not his. He wanted to adopt. Neither one of them was prepared to compromise and despite the interventions of a wonderful psychologist and then also a marriage counselor, it was a downward spiral. Then, Avi missed a follow-up appointment and stopped coming all together.
It had been a good 2 years since I had last seen Avi when the assistant knocked on my door. The next morning I saw Avi in the waiting room. The woman next to him was not Talia but his mother. I concluded the obvious: divorce. The thought that now he was in relapse (why else would he need an appointment with me?) and would have to go through salvage therapy without her was paralyzing.
I called him in to my office. He looked great!
People Like Us: What it Means to be an Outsider in Oncology
Listen to ASCO's Journal of Clinical Oncology essay, "People Like Us," by Dr. Stephanie Graff. The essay is followed by an interview with Graff and host Dr. Lidia Schapira. Graff reflects on her life experience as a female physician, farmer’s daughter, mother, and pie connoisseur to connect and help her patients get through a life-altering diagnosis.
Narrator: People Like Us, by Stephanie Graff, MD (10.1200/JCO.22.01835)
I was standing in the dining room on the 15-year-old burnt sienna carpet, so heinous that it could have only been chosen because it was on sale. I remember the afternoon light from the western windows falling across the oak dining table which matched my mother’s brusque, wooden tone. She remembers nothing. She does not remember saying the words that I have so
often replayed, pondered. I was stung by the interaction in a way that rendered me speechless, in a way I now recognize too often in my approach to conflict in adulthood: silence assumed to represent understanding, consent, or complicity.
Weeks earlier, this same woman drove all over our small town hoping to catch the mailman before driving to my track and field meet 30 miles away. I was waiting for word from the University of Missouri-Kansas City (UMKC) School of Medicine, and I think my mom was
as anxious to hear as I was. Conveniently, her brother (my uncle) was our mailman. When she arrived at the track meet, she handed me the large envelope proudly bearing the school’s logo in the return address. I tore it open sitting with my boyfriend on the bleachers, seeing my prayers answered in black and white before my eyes. There is a photograph of this moment, so I can describe perfectly what I am wearing: my royal blue and white track uniform, my sprinters spikes and—I am sorry to tell you—a neon green hair scrunchy. This photograph also proves, in that instant, my mother understood that what was unfolding was a milestone moment in my life. I remember asking her later when I discovered she tracked the mailman around town to get the mail what she would have done if I had not been accepted. She replied that she knew I had gotten in from the size of the envelope, so she never had to think about it. I like to imagine my mom also had faith in me that led to the wild goose chase for the mailman, even before she saw the envelope.
Within the envelope, in addition to the acceptance letter and glossy brochure telling me all about my wonderful new life as a UMKC medical student, was a parental consent form. The 6-year combined BA/MD program at UMKC was far from inexpensive, and, as a minor, I would need my parents to sign this letter stating that they agreed that we would pay the tuition. Of course, by we what was really meant was I would be taking out student loans to cover every single cent of tuition, room, and board. But the letter, with a DUE BY date ticking ever closer, had been sitting on our dining room table since the day the acceptance arrived, unsigned. My father signed things like this. Never my mother. My mother would not even broach the subject with him. Nice families in rural Missouri just do not talk about money or politics. So, there it sat, a white paper elephant in the room.
“Mom, when is dad going to sign my acceptance letter? The deadline is soon, and we still have to mail it back,” I pleaded with her that afternoon. She turned to look at me, en route from the dining room to the kitchen and said, “Stephanie, people like us don’t go to medical school.”
People like us? Who is this us? Women? Mid-Missouri farmers? People from small towns? Our family specifically? Poor people? I may forever regret not asking. I may forever regret that moment of stunned silence where I only wondered if she had just said no to my dream and considered my next move very carefully so as to not make it worse or potentially close a door forever. By the time I asked her, years later, what she meant in that moment, my
Preparing for the End Game: An Oncologist Shares His Reflections After a Close Friend’s Death
Listen to ASCO’s Journal of Clinical Oncology essay, “Preparing for the End Game,” by Dr. William Beck, a University Distinguished Professor Emeritus and Professor of Pharmacology and Molecular Genetics at The University of Illinois at Chicago. The essay is followed by an interview with Beck and host Dr. Lidia Schapira. Beck reflects on his own mortality and what it means to live, following his good friend’s illness and death from lung cancer.
Narrator: Preparing for the End Game, by William T. Beck, PhD (10.1200/JCO.22.01758)
Recently, Jordan, a dear friend who had stage 4 lung cancer, died of his disease, a year and a half from his diagnosis. His tumor had activating mutations in the epidermal growth factor receptor, making him a candidate for treatment with osimertinib, a targeted therapy, one of the recent rewards of the remarkable advances in precision medicine. Jordan was my age, late 70s when he died. He was a lifetime nonsmoker, had several outstanding lung cancer oncologists, and was determined to fight his disease. That said, 3-year and 5-year survival rates for people with his disease are not high, but living beyond those years is statistically and biologically possible. That was not so in Jordan's case.
Jordan's illness was distressing to me because he was my good friend. We went back decades and began our academic careers together, and we bonded through our shared academic experiences and our love of good wines, food, books, humor, and politics. Over the course of his illness, I tried to think of how I could be there for Jordan and his wife, also a good friend, as he went forward on this very difficult journey. Jordan was very fortunate to have state-of-the-art medical care, a loving wife and adult children, and many close and caring friends who wanted to walk with him on this journey to the extent that he wanted us with him. Because I was in the cancer field, I was able to help him and his wife better frame the questions to ask his oncologists, understand the tests ordered and drugs he was taking, identify other oncologists for second opinions, and search the literature to help them find the best treatments to hold the tumor at bay.
Jordan's illness, however, was distressing to me for another reason. It made me think about my own mortality and how, if it were me, would I want to spend my last months and years, knowing that the end is now a reality. Jordan was a retired academic, scientist, and long-term and consequential university administrator. Like my friend, I have been retired for a few years, having run a productive academic cancer research laboratory and having held a number of administrative positions as well.
My distress was compounded by external events over these past few years. We have seen the deaths of so many people from COVID-19 in this country and the world, all so painful and many unnecessary. We have also seen the continued violent deaths due to guns and drugs. These, however, were largely deaths in the abstract; they did not have a face for me. That began to change with the extraordinary culmination of the epidemic of Black deaths at the hands of the police, especially the murder of George Floyd. These deaths brought home to me the face and randomness of death and fragility of life, writ large. The past year brought more faces of death to me: many prominent artists and baseball players, whose careers I had followed; internationally impactful cancer scientists and physicians, many of whom I knew personally; and the untimely death of the famous architect, Helmut Jahn, at age 81 years, in a bicycle accident. All these passings have given me pause in a way that I had not expected and starkly reminded me that there is absolutely no guarantee of a tomorrow. Indeed, I will no longer live by the brilliant conceit offered by William Saroyan: “Everybody has got to die, but I have always believed an exception would be made in my case. Now what?”1 Now what, indeed
Being on the Other Side: An Oncologist’s Perspective on Grieving
Listen to ASCO’s Journal of Clinical Oncology essay, “Being on The Other Side; An Oncologist’s Perspective on Grieving,” by Shannon MacDonald, an Associate Professor at Harvard Medical School and a Radiation Oncologist at the Massachusetts General Hospital & Mass General Brigham. The reading is followed by an interview with host Dr. Lidia Schapira and essay author Shannon MacDonald. MacDonald shares her experience with grief, loss, and love after her husband was diagnosed with a mitochondrial disorder that ultimately took his life. MacDonald explores what grief means and how it can be different from what you originally imagined.
Narrator: Being on the Other Side: An Oncologist’s Perspective on Grieving, by Shannon MacDonald, MD (10.1200/JCO.22.01363)
As an oncologist, I had cared for patients facing grave illness and death. I imagined the loss of loved ones and expected grief to be an unbearable sadness, most poignant in the earliest days and lessening with time. I somehow expected that counseling people who grieved would make me more prepared. When my husband Dan died at age 42 years, I realized that I had no idea how grief felt. It was surreal and disorienting, I was displaced from a life that made sense into a new reality, one my mind acknowledged but my heart and soul would not accept.
Dan’s initial diagnosis offered a glimpse into a different life. It was unsettling but included us both. When we were newly engaged, Dan abruptly lost vision in one eye quickly followed by the other. I vividly remember the dark, neuro-ophthalmologist’s office in New York City where I was a resident. I sat next to a young medical student who appeared fascinated as my 31- year-old fiance´—who did not yet appear blind— struggled to count fingers or the big E projected on the wall before us. As unremarkable magnetic resonance imaging, spinal tap, and laboratory results were posted, rare disorders floated into the differential. Dan had a mitochondrial disorder. My fiance´ had transformed into a medical student case study.
It is not possible to understand the impact of a life-altering diagnosis until you are on the receiving end. How dramatically life can change in an instant. How painful the guttural yearning to go back in time can be. Dan and I both came from healthy, loving, families and had a close knit and fun group of friends. Dan had an MBA and ran a family company. I was a doctor in training. We lived active, full lives with plans for our future. We had no medical problems, and although aware as an oncologist that a medical diagnosis can derail a healthy young person’s life, we or I never thought this could happen to us.
In the weeks that followed Dan’s diagnosis, his vision deteriorated. We retreated into a world that included just us. We moved our couch just a few inches from our television. I read menus to Dan at restaurants, and he corrected my mispronunciation of ingredients. I took over as our driver despite being a city dweller with little driving experience. We got handicapped plates, a cane, researched seeing eye dogs, and had a conversation that abruptly ended when I uttered the word “Braille.” One night when I asked why he could not fall asleep, Dan answered, “I am afraid I won’t be able to see your face when I wake tomorrow.” We left the lights on and did not sleep that night.
Fortunately, Dan’s vision loss was not complete and, although painfully slow, he recovered some of his sight. Over time, he reintegrated into his friend circle and work with adaptions and the help of a low vision clinic. We were grateful throughout. Dan was an avid skier and was able to ski again once he realized that muscle memory was more important than vision. With time, he no longer appeared blind. He gained the confidence to return to contact lenses, which allowed him to remove his glasses and sunglasses that hid his eyes.
Dan had to face additional challenges. He developed bilate
Mudras in Medicine: A Role for Dance in Appreciating Non-Verbal Communication in the Clinical Encounter
Listen to ASCO’s Journal of Clinical Oncology essay “Mudras in Medicine: A Role for Dance in Appreciating Non-Verbal Communication in the Clinical Encounter,” by Drs. Maheetha Bharadwaj, Nagda Dipal, et al. Essay authors Dr. Bharadwaj, a urology resident at the University of Washington, and co-author Dr. Dipal, a medical student at Harvard Medical School, are interviewed by host Dr. Lidia Schapira. Drs. Bharadwai and Dipal provide insight on how they use non-verbal communication in the form of Bharatanatyam, an Indian narrative art form, as a way to reflect oncology patient care.
“Mudras in Medicine: A role for dance in appreciating non-verbal communication in the clinical encounter,” by Maheetha Bharadwaj, MD, MS, Mphil; Dipal Nagda, MPH1; and Lipika Goyal, MD, MPhil (10.1200/JCO.22.00657)
Narrator: We present a classical Indian dance piece that depicts a patient and their partner receiving a cancer diagnosis from their oncologist. The primary purpose of this piece
was to provide a vehicle for patients, physicians, and caregivers to process a life-altering cancer diagnosis. The piece was choreographed and performed by two of the authors (M.B. and D..), who are medical students and classically trained Bharatanatyam dancers, and the project was guided under the mentorship of the senior author (L.G.) who is a medical oncologist. Through the process of designing this project during the COVID-19 pandemic, the authors also reflect on the role of visual arts in providing a space for contemplation and in promoting nonverbal communication in the era of virtual medicine.
Mudras, or hand gestures, embody one of ancient India’s most visual forms of storytelling and are the threadwork of the Indian classical dance form of Bharatanatyam. Historically performed as a temple dance, Bharatanatyam serves as a vehicle for communicating and preserving narratives from Hinduism’s greatest epics.1-3 Every mudra is intricately crafted and distinctly designed, with each bend of a finger and curve of the wrist representing an object, an emotion, or a state of being. Mudras are interlaced with rhythmic footwork and facial expressions in Bharatanatyam, producing a language that connects the performer to themselves, to the audience, and to the story being told. The style of Bharatanatyam specifically has been previously adapted for therapeutic relief and healing among survivors of natural disasters and victims of trauma. Although some artists have explored the use of Bharatanatyam to convey medical narratives, none to our knowledge have directly covered the nuances of clinical relationships in the context of a cancer diagnosis.
A few weeks after the onset of the COVID-19 pandemic, we found ourselves in an exchange of mudras over coffee on the patio. As both medical students and trained Bharatanatyam dancers, we were lamenting the difficulties of communicating to patients with masks. “He couldn’t hearme,” one of us expressed. After some pause, the other extended her right hand in
Katakamukham toward her chest, whereas her left hand also in katakamukham drifted toward her ear, together signifying a stethoscope. “Is this how you asked your patient if you could listen to their heart?” she asked. We both smiled. With her hands in place, she leaned her torso to the left and extended both hands in chaturam. She painted a rectangular frame in mid-air, signifying a chest x-ray. In silent melody, we played call and response, gliding our hands across the table and delicately placing our fingers into mudras.
As case counts ticked upward, distressing news filled our personal and professional lives and we both found ourselves turning to mudras to express our states of emotion and responses to the pandemic. It dawned on us that dance may play a critical role in reflecting on and processing difficult medical situations, especially in the isolating environment of the pandemic. We thus embarked on a project to
The Will to Go On: Learning When to Let Go
Listen to ASCO’s Journal of Clinical Oncology essay, “The Will to Go On,” by Dr. Sumit Shah, Clinical Assistant Professor of Medicine and Oncology and Medical Director of Digital Health at Stanford University School of Medicine. The reading is followed by an interview with host Dr. Lidia Schapira and essay author Dr. Shah. Dr. Shah explores a patient’s will to live and recounts witnessing a powerful bond between a patient and her spouse.
Lidia Schapira: Welcome to JCO’s 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 Shapira, Associate Editor for Art of Oncology, and Professor of Medicine at Stanford. With me today is Dr. Sumit Shaw, Clinical Assistant Professor of Medicine and Oncology and Medical Director of Digital Health at Stanford University School of Medicine. We'll be discussing his Art of Oncology article, ‘The Will to Go On.’
Full disclosures for our guests will be linked in the transcript and can be found on the article’s publication page.
Sumit, welcome to our podcast!
Sumit Shaw: Thank you, Lidia! It's a pleasure to be here. Thank you so much for having me.
Lidia Schapira: It is our pleasure. So, before we start to discuss ‘The Will to Go On’, I'd love to ask you a general question about what you read and what you're currently reading now, and what you can perhaps recommend to our listeners.
Sumit Shaw: Yeah, absolutely, Lidia. So, when I'm not reading randomized clinical trials in oncology, I try my best to read for enjoyment. I typically right before going to bed. I tend to gravitate towards work outside of medicine. Currently, I'm reading All the Light We Cannot See by Anthony Doerr, which is a World War 2 story told through the eyes of a blind French girl and a German boy in France and how their parallel paths eventually intersect.
Doerr writes so beautifully and uses language to create these very vivid scenes. It's really a remarkable masterpiece that's taken him over 10 years to write. So, it’s quite extraordinary and highly recommended to our listeners and readers.
Lidia Schapira: Thank you! I love that book. I share your enthusiasm. Let's move now to your story, ‘The Will to Go On’. You describe an encounter with patient Diane and her husband during your 2-weeks stint as the attending physician in an academic oncology inpatient service.
So, let's start and unpack that for a moment. How do you envision that role in terms of your connection to patients? I've heard many colleagues who say that it's very difficult because they don't know these patients and they haven't cared for them. How can you introduce some humanism into that role?
Sumit Shaw: Yeah, absolutely, Lydia. So, we have several services that deal with just Oncology at Stanford. My favorite service is the teaching service where we're working with residents and interns and fellows, strictly with patients who have cancer.
It is a very emotionally charging month for our trainees. And a lot of my responsibility, I think, is actually keeping that dynamic and the culture of the team to be as positive as possible.
So, I have certainly a responsibility to my patients, which I think is really important, but really also to the trainees. And so, I think it's incredibly important that we model good behavior.
So, that's what I see as a large part of my job is really having these very difficult conversations with patients for the most part that we've never met because they're often treated by their own primary oncologist who's someone different than I, and oftentimes even more challenging given that they're typically coming in with a disease that we may not be even familiar with, given that we mostly subspecialize at Stanford as well
Meaningful and easy podcast - recommend for any clinician or patient at any level
Grateful for this podcast that reminds us of the humanistic side of medicine at a time when this is needed, perhaps more than ever. This podcast explores poignant topics with a reading of a narrative followed by an interview with the author by Dr. Lidia Schapira to further explore the meaning of the narrative. A concise and meaningful podcast. Easy to listen to and typically a short 20 minute listen. I enjoy the interview portion most.