Storytelling at ASCO: 'It's the People, the People, the People'

Nick Mulcahy

June 03, 2018

CHICAGO — In attempt to return oncologists to their deep human selves amid the dulling effect of too much data, the American Society of Clinical Oncology (ASCO) offered attendees at its annual meeting a new session this year — ASCO Voices, a storytelling event, held on the conference's second day.

The idea was the brainchild of Jamie Von Roenn, MD, an oncologist and vice president of education at ASCO in Alexandria, Virginia. "It's about our humanity," Von Roenn told Medscape Medical News about the new session.

"No podium and no slides; just a story and a stage," reads the online description of the session, which aims "to expand the view of oncology, medicine and the world — from big ideas to personal passions."

The session will "present stories that differ significantly from the remainder of session types available at the annual meeting."

The five storytelling participants were chosen from 60 video submissions made earlier this year, said David Spigel, MD, who chaired the initiative and is from the Sarah Cannon Research Institute and Tennessee Oncology in Nashville.

The selected performers included Trevor John Bayliss, MD, from the Berkshire Health Services in Pittsfield, Massachusetts, who presented "Heroes, Mentors and Hope," a story of his diagnosis of large granular lymphocytic T-cell leukemia as a young man, and his subsequent curative response to methotrexate, a set of events that inspired him to enroll in medical school.

Next up were Nina Shah, MD, from the University of California San Francisco, and Rachna Shroff, MD, from the University of Arizona, Tucson, who co-presented the story of their friendship, which began when they were both  trainees at the University of Texas MD Anderson Cancer Center in Houston. It has continued even as they pursue  academic careers at different institutions and has deepened through their  shared status as working mothers.

Dr Edmond Ang

Then Edmond Ang, MBBCh, from Palmerston North Hospital in New Zealand, performed "Chemoboy," a tale about his early career job of delivering chemotherapy in the gynecologic oncology ward in a clinic in Borneo, an island in Indonesia full of low-income people. Working under a harsh head nurse, Ang said that, "Where is the chemoboy?!" was the "worst thing" you could hear from her on that job because it meant you did something wrong. Ang closed the talk with a proverb from the Māori, the native people of New Zealand. "What is the most important thing about work?" the proverb starts. "It is the people, the people, the people," it closes.

Who Would You Call?

The final story, titled "The Call," was from Patrick Loehrer, MD, from the University of Indiana Simon Cancer Center in Indianapolis. It packed an emotional punch that must have moved even the most hardened of hearts in an audience of oncologists and healthcare professionals exposed on a daily basis to death from cancer.  

Loehrer started his story off with a bang: "I suspect that there isn't a single person in here who hasn't thought about dying from cancer."

"If you did develop cancer, the question is, Who would you call?" he asked the audience.

Sure, a physician, family members, and friends, said Loehrer. "What about after that?" he further asked, leaving the question unanswered.

Loehrer continued, telling the audience how a  few years ago he was in Boston on Labor Day weekend, "helping my daughter settle into a new apartment, when I got a call from Dave Lockhart. I could see his name on the caller ID. My wife and daughter still remember overhearing my greeting: 'Hi, Dave! (Long pause). Oh shit.'"

The call was from a colleague, Dave Lockhart, MD, PhD, a professor of medicine and cancer researcher at Indiana University and an internationally known investigator in pharmacogenomics, said Loehrer.

Loehrer continued with the shorthand curriculum vitae of Lockhart but inserted an arresting personal detail: "He was born in Scotland, the son of Australian immigrants. His father was a scholar in divinity. He was the eldest of five children. He ended up going to Bristol to study biochemistry and the week that he left his youngest sister — who was 12 years old — died suddenly in her sleep. He went on to get a degree there and went on to get his PhD at the Welsh School of Medicine and later on came to the States with a postdoc at Vanderbilt University, where he got a faculty position. He did this for several years, but, probably thinking about [his sister] Fiona, he applied and got into the University of Miami, where he went to medical school and got his medical degree 11 years after his PhD. He went to Georgetown for his residency and did a fellowship in clinical pharmacology and joined their staff."

Eventually, Lockhart was recruited to Indiana, where he founded the Indiana Institute of Personalized Medicine.

Loehrer continued: "He was an extraordinary individual: to describe him, he was about my height [5'8 or so], my build [some extra pounds], high forehead [like Loehrer], grey mustache [like Loehrer] — quite simply the handsomest guy I've ever known [audience laughter]. He was just a lot of fun."

Then Loehrer set up the rest of the story with one line: "But I have to say he was more of a colleague than a friend. We had never broken bread together."

But I have to say he was more of a colleague than a friend. Dr Patrick Loehrer

"Hi Pat, I've got a glioblastoma" was what Lockhart told Loehrer during the phone call that he took while helping his  daughter move into her new apartment.

"There wasn't a sense of pity in his voice or angst or fear. It was as if he knew he was going to get cancer and he was just surprised it was a glioblastoma."

Next, Loehrer related, with great detail, how Lockhart self-diagnosed his brain cancer after developing a tremor in his hand. "He said he was going to delay surgery for a couple of weeks because his father had died and he had to go back to Scotland for a memorial service. It was really a tough week for this guy."

Loehrer continued: "He came back and told me that he only told a few people, including Eric Meslin, who was head of the Indiana's Center for Bioethics, because he had a grant under review."

Dave had surgery, went to rehab, got out of the hospital. Together with another colleague, Eric Meslin, they  "decided we would see him on a Sunday morning. We went to Starbucks. Dave had given us his order and he said, 'oh, by the way, can you get a pint of milk for me.'"

"Who gets a pint of milk at Starbucks? It costs $12, it comes from lactating llamas, and Dave never paid me back," groused Loehrer.

It was a pivotal moment in the three men's lives. "Eric and I thought we would just be there for a few minutes — just to be polite, to say: 'How you doing? I know it's been tough.' We figured it would be a few minutes, then we would get out of his way. We sat down at a table…and we sat there for 2 hours."

Lockhart explained his surgery and his rehab and even had a celebrity detail to offer Loehrer and Meslin: "In rehab, he met a guy who cowrote 'Margaritaville' with Jimmy Buffett. He was independently wealthy because of the rights [to the song]."

Lockhart talked about the kindness and diligence of his nurses and "how he learned to speak again."

"We had a wonderful visit and Eric and I thought we did what we needed to do and left."

But the day after, Loehrer and Meslin both got a text from Dave: "Next Sunday?"

"And so it began, we met with Dave every Sunday or every other Sunday." But Lockhart wanted his illness to be a "teachable moment," so he invited a fourth member to the group, Barbara Lewis West, who had worked with the local NPR station and had her own show, Sound Medicine.

Week after week, the group talked, with no agenda. They talked about, among other things, family and friends.

"Dave, it turns out, was estranged from his ex-wife, and had three children who lived on the East Coast. He had a brother who lived in Oxford [England] and another one who lived in Scotland. And a sister who lived in Perth, Australia. So he had no family nearby. He had lots of friends all over the world but no family support structure."

The four of them talked about a lot of things, "including the concept of median survival, which we think of as a bell curve…the median survival time for glioblastoma is around 14 months."

"We talked about generosity. Dave told the story of going to the Cleveland Clinic and while he was there he got lost. But the dean of nursing happened by with a bunch of nursing students. Dave asked for directions and the dean of nursing said, 'Follow me'. And she walked him a quarter mile to the clinic. And he was so moved by that."

Then Loehrer bungled a line — his first in an otherwise flawless story, clearly caught up in emotion: "So as this went on, it was just a wonderful explanation of what was…uh, uh…of the friendship that we had, that we were developing over the few years."

Meanwhile, Dave had radiation therapy, chemotherapy with temozolomide, and immunotherapy with a checkpoint inhibitor, but unfortunately, "the tumor just continued to progress" and he became more disabled.

Loehrer took Dave to the apartment of Indiana's Larry Einhorn, who is "arguably the most famous oncologist in the world," and he held Lockhart's hand and told him, "Dave you've made a difference."

"Dave's eyes welled up and he cried," Loehrer told the audience, while fighting back tears himself.

Months later, Dave died, surrounded by his sons, daughter, and two brothers. "He was surrounded by love at the very end. It was terrific."

"There was something magical with Dave there," said Loehrer about his Sunday get together with Dave, Barb, and Eric.

"I am more convinced than ever that I am going to die from cancer. Sorry. But the question I ask myself, Who would I call? Yes, I would tell my wife and my boys and my daughter and probably Larry Einhorn. But who else would I call? And more importantly, perhaps — even if I called them, who do you think would answer? The truth is, I don't know, but I hope to find out."

And then Loehrer ended his story: "Thank you, guys." It wasn't clear if he was thanking Dave, Barb, and Eric or the audience. Or both.

American Society of Clinical Oncology (ASCO) 2018. Presented June 2, 2018.

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