Podcast: Making connections through storytelling

Jim Dryden (host): Hello, and welcome to “Show Me the Science,” conversations about science and health with the people of Washington University School of Medicine in St. Louis, Missouri … the Show-Me State. In this episode: cancer stories. Recently, Washington University’s Becker Medical Library put together an event to give faculty members, medical students and trainees an opportunity to tell stories, read poems, even to sing about their experiences in medicine. The idea of the new event, called “In Our Words: Connection,” was to help folks feel less alone and to reduce problems with burnout, a phenomenon that many in medicine experience. At the event, 12 speakers and around 100 listeners gathered to talk about life in medicine. There were a variety of topics, but for this episode, we picked one — cancer — and two physicians who told their stories about the illness. One of the storytellers is a Washington University hematology & oncology fellow who treats patients at the Siteman Cancer Center on the university’s Medical Campus.

Emily Podany, MD: So my name is Emily Podany. I’m a clinical fellow in hematology and oncology, and my story was about an oncology patient that I took care of and the importance of connecting with your patients, even if it’s the end of their life.

Podany (previously recorded): When I dropped into her story, she had just been airlifted from an ICU on her way to the mountains, and she was jaundiced, swollen, anemic. She pushed the hair out of her face and gave me a sharp look from behind black-rimmed glasses. “I want these thunder thighs gone,” she said, as a way of introduction. She motioned to her edematous legs. Her husband stifled a laugh, and I smiled. I already liked her. We need to get some ….

Dryden: The other story we discuss in this episode was told by a Washington University endocrinologist who, a few years back, got a cancer diagnosis herself, though at first she thought the lump in her breast might have been caused by a plugged milk duct.

Amy Riek, MD: My name is Amy Riek, and my story was about when I was diagnosed with breast cancer when I was 37 and pregnant with my second daughter and how I made it through that experience.

Riek (previously recorded): But I was a patient now. It took a beat for me to realize, to awkwardly shift with my pregnant belly to the other chair. How can my life have become such a nightmare? But at the same time, why not me? Must be a plugged duct. That’s common, right? What’s not common is breast cancer at 37 while pregnant and with a 2-year-old at home.

Dryden: Drs. Riek and Podany were among the speakers at the storytelling event, and then later, the three of us got together to talk more about, well, talking. Dr. Emily Podany chose her topic both because one of her patients had a big effect on her and because after processing the experience for a few years, she wanted to share it.

Podany: I’m a big believer that the end of your life is equally as important as the beginning and the middle, and it represents kind of a bookend to your story. And so I’ve always been very interested in still getting close to patients, especially at the end of their lives. And even if I’m dropped into the center of their story, sort of right at the end, I want to get to know them. And so this story is about a patient where I was dropped into her story right as it was ending. It was a very big learning experience for me because it happened several years ago, and I’ve just started writing it down now, because it influenced how I treat patients going forward because I got to know her so well, and that was so meaningful. And even though she ultimately passed away, that experience made me realize that I would like to be involved in people’s stories, and I don’t want to keep them too far at a distance. Enough of a distance that I’m able to treat them, but close enough that I’m able to understand their stories and really get to know their families and know who they are because I think it makes me a better doctor, and it makes the therapeutic relationship between me and the patients better.

Dryden: Endocrinologist Dr. Amy Riek was on the other side of that equation. She was numb, expecting a baby in a few weeks and hearing from all sorts of folks who wanted to help. Some even suggested that if she wanted to keep her illness private, she could do that, even seek treatment somewhere else.

Riek (previously recorded): And then, three days after diagnosis, an email from a colleague’s husband, Michael, welcoming me to this most unfortunate of clubs. He was already a member, and he offered hope. Hope with evidence to back it. Two of his thoughts live forever in the forefront of my mind. When he thought of his children: “No one on those damn OS curves loved anything or anyone as much as I loved my kids. They will keep me healthy.” And when he spoke of fear: “New and better treatments are coming out amazingly fast. You don’t have to beat it by yourself. You just have to beat it long enough for the cavalry to arrive.”

Riek: I think it was interesting. When I was diagnosed initially, the response from people around me was, “You don’t have to tell anyone at work.” And I was so unmoored by the diagnosis at the time, I didn’t even know what I needed. In the days that followed, it turned out what was really therapeutic for me was actually telling anyone who would listen. I was very open about my diagnosis. I walked around work bald-headed, and it turned out that that was really therapeutic. And having the support of people around me was super important. And so I needed people to tell me good stories of people they knew who’d had a good prognosis. And I just needed people to tell me that I was going to be OK. And I sought out those people with those positive messages, but particularly from people who had been there, from people who’d had that experience in the past.

Podany: I think it’s so wonderful to hear from a patient perspective —

Dryden: Again, Emily Podany.

Podany: — how isolating it is, just because it’s important for us as providers and as physicians and whoever’s working on the team to know how alone people may feel even in a room full of family members, and that if they’re looking for that connection, we can also be part of that connection if we take the time to do so and to listen and to be a part of the story. I think it’s very isolating on the physician side, too, to take care of patients with cancer. And there’s a lot of sadness and a lot of death and a lot of mourning. And even if the person is getting better, there’s mourning of the life that they thought they were going to have, and there’s that chapter change where there was before you found out and after. And we exist in this very strange liminal space right before walking in the room where we know and the patient doesn’t, and we spend a lot of our day bringing the patients with us into the future part of their lives where they have cancer. And that’s challenging, and I think it’s something that I wish we talked about more. And I loved the storytelling event because it felt like I got to share that experience.

Podany (previously recorded): “She’s extraordinary. I want you to know that this is the most amazing woman you have ever met,” he said. The attending looked up from his paperwork, the med student stopped typing on her computer, and this stillness descended over the team. “She’s changed so many lives,” he said. “Pretty much every single one she’s come in contact with.”…

Dryden: Does knowing there are some patients you can’t help frustrate you? Does it make you a better doctor? Does it put pressure on you? What’s it like having the chart in your hand, walking in to that patient who doesn’t know what is on the other side of that conversation?

Podany: I think what’s very important to me, at least, has always been to make sure that the patient knows that they are the driver of their life. And I’ve noticed that sometimes that creates a positive spin, because even if there’s nothing we can do about the cancer — it’s there, it exists — and if there really is nothing available, we can still give them time to do what they would like to do, even if it’s limited time. And telling them, “This is your choice. It is your life. Even if it’s the end of your life, it’s still your life, and you still get to decide.” That’s what gives me — stops me from being frustrated, I guess, is if the science isn’t there, it isn’t there, for right now. But at least I can help with the end part and kind of guide them through the mourning process and the grieving process and be there for them and get to know them, and then see, “Well, what do you want to do? Do you want to travel? Do you want to garden? Do you want to — what can we do to help you with this part?”

Riek: I, thankfully, didn’t have to have end-of-life conversations with my oncologist.

Dryden: Again, Amy Riek.

Riek: Things went well for me. But I think that Emily’s speaking of something that is more universal, and that’s this idea of a sense of control over your life. I think the thing that makes a cancer diagnosis overwhelming is that it feels tremendously out of control. And the things that were the most therapeutic for me, and the people who were the most therapeutic for me, were the people who helped to give me back that sense of control. And so for me, it was a dear friend who already had cancer at that point and had done a ton of research about things that improved survival, and so helped teach me what those things were that I could do so I wasn’t just sitting around waiting for my next chemo. So things like exercise and good sleep, and trying to maintain my mood and not settle into depression, and foods that might help. And maybe the evidence isn’t great, but man, it’s not going to hurt you. And so it gave me a purpose in a time where I felt otherwise aimless.

Dryden: You mentioned that friend who had had the cancer and was giving you advice.

Riek: He passed a while back after multiple recurrences. And so even though in the end he didn’t make it, there was so much positive out of my interactions with him. He really did — as I said in the story, he saved me.

Dryden: And you, Emily, you mentioned that the woman that you spoke about, it was an experience that happened a while back now, and you’re just now sort of processing it and writing about it. What took so long? Is it the box you don’t want to open, or why?

Podany: Narrative medicine and writing has always been my No. 1 hobby. And I don’t have a lot of free time as a trainee, but when I do have it, I tend to write the stories of the people that I see. I then put them aside for a long time. So part of that is just HIPAA. I would like to be a little separated from it so that I can go back and really comb it down and make sure that I haven’t identified anybody, because I would never want to do that without their permission. Writing things down or talking about them or communicating in some way, and for me, that’s writing, but for other people, it may be talking to friends, talking to colleagues, even just recording themselves talking about a story, I think is really important when what we do is hard. And so I think having an outlet for that, regardless of what it is, is really important. So I have a whole file folder of writing that eventually I plan to edit and do something with. But I find it very, very therapeutic to write about it. And then sharing it has actually been surprisingly therapeutic at the same time.

Dryden: Is there a danger that you can become kind of immune, cold or the other way, that you can just be at your wits’ end because you can’t save everybody? And does writing and talking about it help you maintain a balance and not go crazy?

Podany: Writing helps a lot. The other thing is when I was a medical student, I had a patient with end-stage colorectal cancer, and they shared a birthday with me. That’s not HIPAA. I’ll be very vague about the rest of it, but not an exact birthday. Just the day. They were alone, and they felt that they were going to be forgotten. And it was my second year of medical school, so I was very, very, very new. And I remember promising them that I would blow out a candle just for them on my — on our — birthday, and I’ve done it every year since then. The birthday candle was the beginning, but every time that I drive home and I see a sunset, I think about another patient that loved sunsets. And every time that I go and I see a lake, I had a patient who sailed and loved it. And so I think finding these little places in my life to honor the lives that I was a part of stopped me from getting burned out, but because it’s the beautiful things that I remember about them, not the cancer, that stops me from being overwhelmed and sad.

Dryden: You were going through chemo at the same time that you were — and you’re getting advice, “You need more sleep,” and you’ve got a newborn at home. Can you talk a little bit about that? I am imagining that a diagnosis is challenging at any time, but it’s got to be really challenging when you’re trying to nurse a baby.

Riek: It certainly did not come at an opportune time. One of the things that was very difficult was that cancer took away a lot of choices for me. So you mentioned nursing a baby, and I couldn’t. I had two weeks before I started chemo. I was pumping like crazy to try to get up enough supply. After I started chemo, I was tremendously lucky. We had people who sent us meals and people who came and visited and helped care for my kids. I can’t imagine going through chemo and going through treatment with a lesser level of support, but I recognize that millions of people do all the time. Sometimes single moms go through chemo with no support. And I was lucky enough to be able to do as much as I wanted to do but then rest when I needed to rest. And it was difficult, but the interesting thing is that I think doing more probably gave me more energy. And my kids gave me more energy because a 2-year-old doesn’t understand “Mom’s tired and doesn’t want to play right now.” And so you just do it, because that’s what moms do. And I actually think it was energizing to have my kids around me, but it was a lot. It’s hard to think back to that year, and it’s hard to go back there because it was just so much.

Dryden: What about you having been on the patient side of things? Does that influence things when you’re in the clinic on the white coat, doctor side of things?

Riek: I think it does. I have a new empathy for patients. It’s very, very difficult to define yourself as sick. In endocrine, which is my field, we don’t take care of a ton of terminal illnesses, though certainly there are some. But we do take care of a tremendous number of chronic illnesses. And so I think that it’s given me a new appreciation for how difficult that process can be to weave into your otherwise normal-feeling life. People who are sick may not be at their best. And so that allows me to, I think, approach them with more compassion.

Dryden: Drs. Riek and Podany both say that sharing their stories was both daunting and therapeutic. And both hope that because they’ve told their stories to others, they can be better doctors themselves and through sharing help others be better, too.

“Show Me the Science” is a production of Wash U Medicine Marketing and Communications. The goal of this project is to introduce you to the groundbreaking research, lifesaving and just plain cool stuff being done by faculty, staff, and students at the School of Medicine. If you’ve enjoyed what you’ve heard, please remember to subscribe and tell your friends. Thanks for tuning in. I’m Jim Dryden. Stay safe.