Leukemia’s Collision With Souls and Soulcraft

Jason Gotlib, MD, MS
Professor of Medicine (Hematology) at the Stanford Cancer Institute

In this edition, Jason Gotlib, MD, MS, reviews When Blood Breaks Down: Life Lessons from Leukemia by Mikkael Sekeres, MD, MS, which explores how a diagnosis of leukemia affects the lives of three patients, their caregivers, and their doctors.

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Title: When Blood Breaks Down: Life Lessons from Leukemia
Author: Mikkael A. Sekeres, MD, MS
Length: 328 pages
Published: March 2020, MIT Press

When Blood Breaks Down: Life Lessons from Leukemia by Mikkael Sekeres, MD, MS, follows the initial diagnosis and disease course of leukemia in three patients: Joan, David, and Sarah. These patients are composites of individuals the author has cared for during his career as a leukemia physician-scientist.

They are respectively diagnosed with acute promyelocytic leukemia (APL), acute myeloid leukemia with myelodysplasia-related changes, and chronic myeloid leukemia (CML) in the setting of pregnancy.

As Director of the Leukemia Program at Cleveland Clinic and frequent contributor to the Well section of The New York Times, Dr. Sekeres lends an authoritative and compassionate voice to these patients’ experiences. In fact, there is a palpable avoidance of hubris and medical paternalism; he introduces the reader to the complex interplay of medical and social issues that defines each patient’s vulnerabilities, while simultaneously depicting the challenges that he and his team face in managing patients’ treatments and expectations.

These patients’ stories are punctuated by historical references to the development of all-trans retinoic acid and arsenic trioxide for APL, imatinib for CML, hematopoietic cell transplantation, as well as discussion of studies that guide our current practice patterns for various leukemias. In some instances, Dr. Sekeres provides a personal glimpse into his formative training experiences and the lessons learned through his own encounters as a patient navigating the health-care system. These scientific and personal sidebars are richly descriptive and compelling, but can sometimes divert attention from the narratives of Joan, David, and Sarah.

While Cleveland Clinic is Dr. Sekeres’ home base, his accounts of daily life on a leukemia inpatient unit and the dialogue between attending physicians, trainees, and patients feel eerily familiar. They can easily be swapped with my experiences on the Med 8 leukemia service at Stanford Hospital (and I suppose most other academic cancer centers): the ritual of team rounding with the electronic medical record Workstation On Wheels (WOW) to review patient data and place orders; the urgent pages to the on-call hematopathologist to get a preliminary read on the day 14 marrow biopsy; the angst surrounding delivery of bad news about a marrow sample with persistent leukemia; and the challenge of meting out hope without the guarantee of a favorable outcome.

Whether patients realize it or not, when we physicians walk into their rooms on morning rounds, we scan the walls for decorative cards and photos so we can better understand their circle of family, friends, fraternity brothers, or pets, as well as special occasions that serve as a reminder of their recent former lives – their “true true.” Many patients find inspiration in these pictorial displays during their prolonged hospitalization. We do, too; we welcome guardrails that help neutralize pessimism and marshal strength in the face of the dehumanizing effects of leukemia and chemotherapy.

When Blood Breaks Down’s audience is broad. Everyone either personally has suffered from or knows someone who has endured a battle with cancer. They will relate to Dr. Sekeres’ sensitive treatment of the cancer journey, which engages multiple perspectives, from the attending physician, trainees, and most important, patients and their families. These “lessons from leukemia” feel honest – a mingling of anxiety and uncertainty, and moments of joy and humor, underpinned by decades of discoveries that have led to increasing rates of remission and cure across a spectrum of leukemias.

Newly diagnosed patients will be introduced to a journey that is usually hidden behind sterile hospital walls and cloaked with alien medical lingo. But more than being a Leukemia 101 tutorial on induction chemotherapy and the trajectory of blood count recovery, When Blood Breaks Down provides the reader with access to the culture of the leukemia team on the other side of the patient’s anteroom.

Dr. Sekeres’ focus on the personal details of patients’ lives and their family dynamics should be reassuring to patients who may believe that we physicians just place them in impersonal disease silos (e.g., “the 58-year old male with AML”) with only muted acknowledgement of their individual concerns. This may happen in some cases (perhaps more frequently than we’d like to admit), but the stories of Joan, David, and Sarah reveal how developing familiarity and trust with your patients can cultivate improved decision-making, particularly about end-of-life care.

The specialty of hematology/oncology attracts trainees for many reasons, including an abundance of research opportunities and a track record of transformative advances against cancer. However, I would argue that it self-selects for the especially empathetic physician who understands that most patients will lose their battle with cancer, and that talking, listening, and handholding are as important as the results of the next cycle of treatment. Most medical students will already know the value of these connections, and residents rotating through the hematology service will soon figure out how to conduct such delicate bedside interactions by creating some chimera that reflects the most compassionate and effective behaviors of their physician-mentors. Trainees should be reinvigorated by Dr. Sekeres’ exposition on this aspect of the art of medicine. In this regard, When Blood Breaks Down is as much an exploration of the soulcraft of physicians who treat leukemia as it is a study of how patients’ core beings are shaped by leukemia itself.