Mikkael A. Sekeres - When Blood Breaks Down: Life Lessons from Leukemia

Mikkael A. Sekeres

The MIT Press

Cambridge, Massachusetts | London, England

2020 Mikkael A. Sekeres

Maya Angelou, Caged Bird, from Shaker, Why Dont You Sing? Copyright 1983 by Maya Angelou. Used by permission of Random House, an imprint and division of Penguin Random House LLC. All rights reserved.

Sharon Olds, His Stillness from The Father. Copyright 1992 by Sharon Olds. Used by permission of Alfred A. Knopf, an imprint of the Knopf Doubleday Publishing Group, a division of Penguin Random House LLC. All rights reserved.

All rights reserved. No part of this book may be reproduced in any form by any electronic or mechanical means (including photocopying, recording, or information storage and retrieval) without permission in writing from the publisher.

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Library of Congress Cataloging-in-Publication Data

Names: Sekeres, Mikkael A., author.

Title: When blood breaks down : life lessons from leukemia / Mikkael A. Sekeres.

Description: Cambridge, Massachusetts : The MIT Press, [2020] | Includes bibliographical references and index.

Identifiers: LCCN 2019025810| ISBN 9780262043724 (hardcover) | ISBN 9780262357814 (ebook)

Subjects: | MESH: Leukemiapsychology | Patientspsychology | Physician-Patient Relations

Classification: LCC RC643 | NLM WH 250 | DDC 616.99/4190019dc23 LC record available at https://lccn.loc.gov/2019025810

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To my wife, Jennifer, and children, Gabriel, Samantha, and Silas, for their unwavering love and support, and for always reminding me what really matters; for my parents, brother, and teachers, I still need your guidance; and always, always for my patients, who inspire me every single day.

This is perhaps the most difficult section of the book to write, as there is a half-century full of people to thank for the experiences that went into its creation.

First, my mentors: Brian Strom, MD, MPH, who taught me in medical school how to think critically and how to conduct clinical research; Stephanie Lee, MD, MPH, who honed these skills during my fellowship and clued me in on the right questions to ask; Richard Stone, MD, who patiently (so patiently) took my skull full of mush and filled it with knowledge of how to treat people with leukemia, and to do so with dignity, humanity, and even humor; Ilene Galinsky, MSN, ANP, and Barbara Tripp, RN, CNS, who did the same, and still do the same; and Brian Bolwell, MD, and Matt Kalaycio, MD, who continue to lead by example with caring and empathy.

Next, my friends: Doug Neu, Noam Neusner, and Shoshana Landow, MD, MPH, my oldest and dearest, who have been steadfastly supportive for decades; David Steensma, MD, Timothy Gilligan, MD, Hetty Carraway, MD, MBA, Nate Pennell, MD, Alison Loren, MD, and Jay Baruch, MD, my mid-life friends, colleagues, writing buddies, and the people I turn to when my writing and research insecurities rear their ugly heads; Karl Theil, MD, for the images and, you know, for everything; and Jaroslaw Maciejewski, MD, PhD, my brilliant, closest research collaborator.

I am grateful to Caroline and Aaron Gerds, MD, MS, and Madeline Waldron, PharmD, who read versions of this manuscript and gave me such careful feedback, and helped ensure the accuracy of the stories and medical facts.

Toby Bilanow and Roberta Zeff, my editors at the New York Times, have been for years so encouraging, and so exquisitely skilled at transforming my essays into readable storiestheir gentle guidance has been a gift.

My indefatigable agent, John Thornton of The Spieler Agency, believed in me from the moment he read a sample of this book in its first draft, and talked me off the ledge of despair more times than I care to admit! By offering his calm guidance and wise perspective, I believe he has qualified for an honorary degree in psychology.

Robert Prior, my editor at the MIT Press, also believed in me from the very beginning. His ability to mold text into something understandable, with great insight, has been extraordinary. What a pleasure to work so closely with someone like Bob. I am also grateful to Mary Bagg for her skilled copyediting, which put so many sentences back on the rails.

My wife, Jennifer, and my kids, were infinitely patient on car and plane trips while I remained undistracted and in the moment as I wrote this book, sometimes to their despair! You are my world, the loves of my life. And I dont care if that sounds cringey.

And finally, all of my patients, hundreds and hundreds of you, have taught me how to live a life, and to do so with such grace.

Leukemia needs a better press agent.

I received this advice from my best friend when I told him what specialty I had settled on, soon after I had completed medical school. And in many ways, he was right. Leukemia has a terrible reputation. Before they even get to see me, many of my patients are told that their prognosis is grim and death is imminent. The word is so dreaded that no one in my own family spoke it louder than a whisper, fearing that to do so would somehow invoke the disease. What a wasted precaution: two family members developed leukemia anyway.

People are both terrified and fascinated by leukemia in all its forms. It is a monstera malignant golemthat grows out of control and invades the organs within our own bodies. It is metastatic at its genesis.

Multiple times throughout the year, newspapers, television, and popular websites carry stories about possible causes of leukemias (mouthwash? baby powder?), the genetics of these diseases, what we can do to prevent them, and the newest therapies that might just (finally!) cure them. From 2017 to 2018, nine new drugs were approved by the FDA to treat leukemia, many of which take advantage of leukemias own machinery to be its undoing.

The drama of the moment in which you are told you have leukemia cant be overstated. The world stops spinning. Priorities shift. Your brain cant function. Your rawest emotions, your worst fears, are laid bare, and yet somehow you have to regain your footing enough to make decisions about treatment and to define a new normal; if not for yourself, then for your partner and children.

Those who go into a remission from their leukemia, and who may even be cured, are granted a new lease on life, and often find they cherish the people and moments they previously took for granted. Those who fight leukemia for months or even years may somehow gather the strength, after all treatments have failed them, to decide that enough is enough, and spend their final hours living out what they should have been doing in their final decades.

Easily one-third of the medical residents who apply to our hematology-oncology fellowship program at Cleveland Clinic, in which they train to be cancer doctors300 applicants for 6 positions per yearwrite an essay about a leukemia patient they cared for.

Why? Because there is that moment, when a doctor hears about a person whose blood counts are 10 or 20 or even 30 times higher than normal and wonders, Am I going to be able to fix this?

And then theres the next moment, when the patient meets this doctor who is supposed to solve the awful puzzle of a bone marrow gone horribly wrong. Together they move forward, one step after the other, developing a plan. Their lives become intimately entwined for months on end as the puzzle pieces are reassembled, the bone marrow functions normally again, and their plan turned out to be the right one.