Suleika Jaouad's future was exceptionally bright. She had just graduated from Princeton, moved to Paris and was on her way to northern Africa to launch her dream of becoming a foreign correspondent. Then came three unexpected and terrifying words: “You have cancer.” After five different opinions during her 22-month medical odyssey, the results of a bone marrow biopsy confirmed the dream-crushing diagnosis for the 22-year-old: Acute Myeloid Leukemia and a rare blood disorder called Myelodysplastic Syndrome.
“No one is ever prepared for those three words,” said Jaouad. “But cancer doesn’t care who you are or how old you are. It doesn’t discriminate,” Jaouad told the audience of medical professionals at the 2014 AAMC annual meeting in Chicago. Instead of reporting on foreign revolutions, Jaouad ended up “reporting from the front lines of a different kind of revolution: one that was taking place inside of me.”
“I thought that I would be behind scenes and tell others stories,” said Jaouad “It never occurred that story would be my own.” But as she begin looking around the waiting room in the oncologist’s office and browsing the cancer section at Barnes & Noble, she felt like nothing addressed her as a cancer patient. Nothing spoke to her. There seemed to be no one like her. She was inspired by broadcast journalist Amy Goodman’s definition of a journalist: “The role of reporters is to go to where the silence is and say something.” Jaouad decided that she could shine a spotlight on a group of people too often voiceless—the 70,000 young adults diagnosed with cancer every year.
At 23, she launched her Emmy Award-winning column, “Life, Interrupted” as part of The New York Times Well blog, reporting from the front lines of the bone marrow transplant unit at Memorial Sloan-Kettering Cancer Center. “Cancer is not something that makes you want to share,” said Jaouad. “It did not come naturally.” Inadvertently, she became a patient advocate, which was a cathartic experience for her personally, and also created a community—online and offline—to combat the intense loneliness she felt.
Jaouad finished her last cycle of chemotherapy in April and says she’s “deeply grateful to say that I’m finally cancer free.” Two weeks ago, she had her port removed and appreciated her doctor’s joke: “Congratulations, you’re being deported today.” She realizes now that she has been deported from land of disease to survivorship, which she admits has not been an easy transition. She references Susan Sontag’s metaphor for illness: “Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick.” She adds that there is a no man’s land between those kingdoms where patients like her—who don't have active disease but feel far from well—live. “There is no map to guide you back to the land of the well,” she says. But she has a new mantra: “Health is about adding life to years, and not years to life.”
Panel moderated by Marsha D. Rappley, M.D., Dean, Michigan State University College of Human Medicine.
Amy Albo is the Publisher for University of Utah Health Sciences.