When a loved one falls ill how to be an effective patient advocate

MORE PRAISE FOR WHEN A LOVED ONE FALLS ILL “As a trial lawyer, Brian Monaghan stood alone—GovernorGray Davis of California once said he would rather wrestleJesse Ventura than face Brian in trial In 1998, at the peak of his career, he stood before a massive crowd to receive the Association of Trial Lawyers of America’s most coveted award—the Steve J.Sharp Public Service Award; he had just been diagnosed with melanoma Unbeknownst to the audience, he now faced his last case, the greatest trial of his life, his battle for survival.The story of how Brian and his wife, Gerri, conquered cancer should be read by anyone with a life-threatening illness It will make you laugh and cry … It’s the greatest tribute to the power of positive thinking since Norman Cousins wrote of his experiences.” —DAVID CASEY, TRIAL LAWYER, FORMER PRESIDENT,THE ASSOCIATION OF TRIAL LAWYERS OF AMERICA “By one of America’s great trial lawyers, the saga of an extraordinary, successful battle against brain cancer From a devastating prognosis of months to live, this couple tamed the dragon with courage, intelligence, pluck, humor, and yes, luck It is a story about the industrial-medical complex of America, with its towering strengths and its frailty But mostly it is about the strength of two good people who never stopped believing that they would survive to enjoy their families, friends, and each other.This is a book for all seasons.” —BILL GORHAM, FOUNDER, THE URBAN INSTITUTE, WASHINGTON, D.C “With When a Loved One Falls Ill, Brian and Gerri Monaghan have hit one out of the park This is not only a great story, but it’s a winner when it comes to helping all of us cope with cancer or any other tough medical challenge A tip of my hat to them both!” —DAVE WINFIELD, BASEBALL HALL OF FAMER WHEN A LOVED ONE FALLS ILL How to Be an Effective Patient Advocate by Gerri & Brian Monaghan Workman Publishing, New York         A Note to the Reader: The authors are not, nor we pretend to be, experts in the medical field The knowledge we have acquired and the information shared with the reader is based on our experience and our common sense It is not, and should not be considered, medical advice We urge you to consult with and seek treatment from a medical professional Neither the authors nor the publisher shall be liable or responsible for any loss, injury, or damage allegedly arising from any information or suggestions contained in this book Copyright © 2009, 2011 by Brian Monaghan and Gerri Monaghan All rights reserved No portion of this book may be reproduced— mechanically, electronically, or by any other means, including photocopying— without written permission of the publisher Published simultaneously in Canada by Thomas Allen & Son Limited Library of Congress Cataloging-in-Publication Data is available eISBN 9780761166498 Originally published as The Power of Two, now revised and updated Cover photo by Michael Spengler Workman books are available at special discounts when purchased in bulk for premiums and sales promotions as well as for fund-raising or educational use Special editions or book excerpts can also be created to specification For details, contact the Special Sales Director at the address below or send an e-mail to specialmarkets@workman.com WORKMAN PUBLISHING COMPANY, INC 225 Varick Street New York, NY 10014-4381 To each of you who has begun a journey of your own; you are in our thoughts and our prayers Acknowledgments Because our book is a chronicle of our last thirteen years, space doesn’t allow us to give thanks and recognition to all of those who have helped us through this journey If you are mentioned within these pages, you know that you have played a significant part in our journey “Thank you” isn’t adequate to express what we feel, but we truly thank you, and again, we thank you To our family, most especially our children, Kathi and Tom Vaughn, Patrick and Roseanne Monaghan, Todd and Jennifer Wortmann, and Mark and Sharon Wortmann, and our grandchildren, Dylan and Kyra Vaughn, Jake Monaghan, Trevor and Cassidy Wortmann, and Riley and Reagan Wortmann: there is simply no way we could have gotten through these last thirteen years without your love and support You have made the fight worthwhile To Gerri’s Verge family siblings, Carol, Marion, Bill, Helen, and Diane: although thousands of miles separate us, I always know that you “have my back.” To Susan and Steve Parker: you were with us every step of the way, and it goes without saying that you hold a special place in our hearts Our love and special thanks to “our” cousins, Don and Carol O’Connell, as well as to friends of old, Pat and Jack Durliat, Arch and Carol Woodard, and Clark and Denise Hodgson A toast to The Lads for always being there, and especially to the first traveling group: Vince Bartolotta, Larry Broderick, Kim Broderick, Dennis Broderick, Terry Broderick, Tim Broderick, Ed Chapin, Brian Forbes, Chuck Fox, Bill Hall, Noel Hall, John Lynch, Mickey McGuire, Dave Monahan, Mike Neil, Terry O’Malley, Mike Reidy, Leo Sullivan, Mike Thorsnes, and Bob Vaage And thanks to each of you who at some critical point in our battle stepped in to offer your love and support: Kingsley Aikens, Russ Block, Kim Broderick, Dave and Lisa Casey, Toni and Mark Cincotta, John and Mary Clark, Steve and Rita Conway, Jim Eckman, Emily Einhorn, Lou and Judy Ferrero, Joe and Geri Waranke Kennedy, Jerry and Nancy Kohlberg, Judge Gerry and Laura Lewis, Cathy Lynch, Larry and Stacey Lucchino, Ceci Doty MacNamara, Jeanie and Jim Milliken, Dan and Mary Mulvihill, Debbie Malloy, Elaine and Rich Murphy, Cathy Philips, Sandra Rockhill, Milt and Maria Silverman, and Sue Young Vaage A special thanks to Gerri’s empathetic listening post, Judith Oakes Brian’s assistants deserve special recognition: Lauren Berry, Shawna Songer, and the best of the best, Vanessa Marshall Praggastis Brian’s thanks for their understanding to the Boards on which he serves: the San Diego Padres, Hastings College of the Law, the American Ireland Fund We recognize and will always miss two valiant warriors who put up a great fight yet still lost the battle, Judy Keep and Bob MacNamara A special thank you to John for his generosity in helping us donate our book to cancer patients across the country Our thanks to our agent, Linda Chester, whose guidance was instrumental in opening doors for us and for helping us understand the process, and to Karen Olson, who helped give shape to our story and was truly responsible for writing the all-important book proposal Our thanks to our “book doctor,” Kyra Ryan, who helped us to tell our story in our own words, yet was able to help craft those words into a book that will be more easily understood by those who need it most—patients and their advocates Our thanks to each of the fantastic members of the Workman Publishing team, and especially to Mary Wilkinson, our line editor, Janet Vicario, our book designer, production editor Irene Demchyshyn, and typesetters Barbara Peragine and Jarrod Dyer And to Susan Bolotin, who believed in the value of our story, and not only understood the role of the advocate but became one on our behalf Table of Contents Foreword to the New Edition Introduction CHAPTER ONE GET A ’TUDE CHAPTER TWO GET AN ADVOCATE CHAPTER THREE ISSUE A CALL TO GENERAL QUARTERS CHAPTER FOUR REVEL IN LAUGHTER AND THE LOVE OF FRIENDS CHAPTER FIVE PUSH THE ENVELOPE CHAPTER SIX TAKE CARE OF THE HOME FRONT CHAPTER SEVEN KEEP ON FIGHTING CHAPTER EIGHT EXPECT THE UNEXPECTED CHAPTER NINE MAKE YOUR LIFE WORTH LIVING CHAPTER TEN RECOGNIZE THE GIFTS YOU’VE BEEN GIVEN EPILOGUE THE MONAGHAN MANUAL THE ADVOCATE’S NOTEBOOK ... Wortmann, and Mark and Sharon Wortmann, and our grandchildren, Dylan and Kyra Vaughn, Jake Monaghan, Trevor and Cassidy Wortmann, and Riley and Reagan Wortmann: there is simply no way we could have gotten... WINFIELD, BASEBALL HALL OF FAMER WHEN A LOVED ONE FALLS ILL How to Be an Effective Patient Advocate by Gerri & Brian Monaghan Workman Publishing, New York         A Note to the Reader: The authors are... three-and -a- half-month trial that was killing him When the judge took a five-day vacation, the break was an oasis As a physician rather than as a client, Dr Self had watched Brian’s condition and