Michael J. Lippe - Pancreatic Cancer: A Patient and His Doctor Balance Hope and Truth

PANCREATIC CANCER

A Patient & His Doctor Balance Hope & Truth

A JOHNS HOPKINS PRESS HEALTH BOOK

PANCREATIC CANCER

A Patient & His Doctor Balance Hope & Truth

A Patient & His Doctor
Balance Hope & Truth

Michael J. Lippe and Dung T. Le, M.D.

Note to the Reader. One of the authors of Pancreatic Cancer: A Patient and His Doctor Balance Hope and Truth is a person who has pancreatic cancer, and the book, in part, is a first-person account of his experience. The other author is a physician who is providing his medical care. This book is intended to acquaint readers with some of the emotions and practical issues that may be involved in the experience of having pancreatic cancer, as well as with some of the expertise and thoughts involved in making decisions when providing medical care to someone who has pancreatic cancer. The book is not meant to substitute for medical care of people with pancreatic cancer, and medical treatment should not be based solely on its contents. Instead, treatment must be developed in a dialogue between the individual and his or her physician. This book is a model of one dialogue and has been written to enhance other dialogues.

Drug dosage: The author and publisher have made reasonable efforts to determine that the selection and dosage of drugs discussed in this text conform to the practices of the general medical community at the time of publication. The medications described do not necessarily have specific approval by the U.S. Food and Drug Administration for use in the diseases and dosages for which they are recommended. In view of ongoing research, changes in governmental regulations, and the constant flow of information relating to drug therapy and drug reactions, the reader is urged to check the package insert of each drug for any change in indications and dosage and for warnings and precautions. This is particularly important when the recommended agent is a new and/or infrequently used drug.

2011 The Johns Hopkins University Press
All rights reserved. Published 2011
Printed in the United States of America on acid-free paper
2 4 6 8 9 7 5 3 1

The Johns Hopkins University Press
2715 North Charles Street
Baltimore, Maryland 21218-4363
www.press.jhu.edu

Library of Congress Cataloging-in-Publication Data
Lippe, Michael J.
Pancreatic cancer: a patient and his doctor balance hope and truth /
Michael J. Lippe and Dung T. Le.
p. cm.
Includes bibliographical references and index.
ISBN-13: 978-1-4214-0061-7 (hardcover: alk. paper)
ISBN-10: 1-4214-0061-8 (hardcover: alk. paper)
ISBN-13: 978-1-4214-0062-4 (pbk.: alk. paper)
ISBN-10: 1-4214-0062-6 (pbk.: alk. paper)
1. Lippe, Michael J.Health. 2. PancreasCancerPopular works.
I. Le, Dung T. II. Title.
RC280.P25L5 2011
616.99437dc22 2010042497

A catalog record for this book is available from the British Library.

Illustrations on pages 14, 15, 42, 107, and 111 are by Jacqueline Schaffer.

Special discounts are available for bulk purchases of this book. For more information, please contact Special Sales at 410-516-6936 or specialsales@press.jhu.edu.

The Johns Hopkins University Press uses environmentally friendly book materials, including recycled text paper that is composed of at least 30 percent post-consumer waste, whenever possible. All of our book papers are acid-free, and our jackets and covers are printed on paper with recycled content.

The Gathering Clouds

What Is Pancreatic Cancer and What Are Its Symptoms?

The Fight Begins

The Initial Treatment

The Prospect of Death

Balancing Hope and Truth

Family and Friends

Managing the Symptoms of Advanced Cancer

A New Approach to Living

Next Steps

What Weve Learned from Our Experience

The roots of our journey, and this book, lie in the collaboration and the dialogue that we have had over the past several years. It is not a journey that either of us would have chosen, had we been given a choice. As with so many other things in life, we were not asked.

In some sense, there was also little choice in whether or not to write about what was happening. The idea of writing about this experience and about the broader subject of pancreatic cancer from the patients and the physicians perspectives came to us in the middle of 2009. Like so much of our dialogue, this conversation started with an e-mail, this one from Michael to Dung, a simple question: Would you like to collaborate on writing a book?

We recognize that our collaboration is unusual. It is not completely unheard of, but it is unusual. Documenting the unusual seems to both of us to be important for many reasons. Foremost among these is the belief that telling one patients story from his perspective and combining it with a detailed account of what is taking place medically can help the tens of thousands of people who are diagnosed with pancreatic cancer each year.

A diagnosis of pancreatic cancer, indeed any cancer that is potentially fatal in a short period of time, is a paralyzing event. Trying to demystify what is going on, and to make the unknown a little less forbidding, became a mission that we felt obliged to accept. In this endeavor, the assistance of many others who have cancer or have cared for loved ones, and have shared their stories with us, has helped us to tell ours.

We have also been helped enormously in this task by Jacqueline Wehmueller, executive editor at the Johns Hopkins University Press. Jackie recognized the value of what we wanted to do, in spite of our first attempt to describe it, and worked with us to shape this final product and to shepherd it through the Presss approval process. We are grateful to her. We also would like to thank all the other Hopkins Press staff members who have worked hard to bring this project to fruition. We especially thank Anne Whitmore, our manuscript editor, for her expertise and guidance in making our book so much more comprehensible, accurate, and readable than when she first received it.

Michael would like to express his gratitude to his wife, Elizabeth Bellamy. Beth has been the model of a caregiverloving, supportive, watching over his welfare like a hawkand without her he would surely not have made it this far. Michael also thanks his team at Johns Hopkins Hospital, led by Dr. Le, without whom, he has little doubt, he would not be here.

Dung would like to thank Michael for his vision and perseverance, without which this book would never have come to be. She would like to thank her husband, Henry Sun, whose concern for his patient brought Michael to her attention. She would like to express her appreciation to her mentors and colleagues, who serve as role models as they care for their patients in a compassionate manner and as they strive to advance the field of pancreatic cancer research.

Finally, Michael and Dung would like to thank all of the cancer patients and their families who serve as inspiration not only for this book but for continuing endeavors in research in hopes of benefiting future patients.

By all rights, I should not be here.

In December 2007, I was diagnosed with stage IV pancreatic cancer. The odds of someone with this cancer surviving for this long are very small indeed.