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Coulda, Shoulda, Woulda A Mother’s Lessons, Learnings, and Insights ffrom Her Daughter’s g Battle with Cancer Caancer

KENNA P. MARRIOTT Foreword by Dr. Maria Rallis, PhD


Coulda, Shoulda, Woulda A Mother’s Lessons, Learnings, and Insights from Her Daughter’s Battle with Cancer

Kenna P. Marriott

iUniverse, Inc. Bloomington


Coulda, Shoulda, Woulda A Mother’s Lessons, Learnings, and Insights from Her Daughter’s Battle with Cancer Copyright © 2013 Kenna P. Marriott. All rights reserved. No part of this book may be used or reproduced by any means, graphic, electronic, or mechanical, including photocopying, recording, taping or by any information storage retrieval system without the written permission of the publisher except in the case of brief quotations embodied in critical articles and reviews.

iUniverse books may be ordered through booksellers or by contacting: iUniverse 1663 Liberty Drive Bloomington, IN 47403 www.iuniverse.com 1-800-Authors (1-800-288-4677) Because of the dynamic nature of the Internet, any web addresses or links contained in this book may have changed since publication and may no longer be valid. The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them. Any people depicted in stock imagery provided by Thinkstock are models, and such images are being used for illustrative purposes only. Certain stock imagery © Thinkstock. ISBN: 978-1-4759-7907-7 (sc) ISBN: 978-1-4759-7908-4 (hc) ISBN: 978-1-4759-7909-1 (e) Library of Congress Control Number: 2013903726 Printed in the United States of America iUniverse rev. date: 4/9/2013


To my best friend and beloved daughter, Jeannine. It was my privilege and my honor to have been your mother. Thank you for gracing my life and for being everything I could have ever wanted in a daughter—and more. You taught me how to maintain a positive attitude under the most adverse circumstances and to have a greater appreciation for life. I love you, honey. Jeannine Leá Mongelli September 3, 1961–May 24, 2008


Praise for

Coulda, Shoulda, Woulda “This story tackles extremely personal situations in a masterful way, sharing Kenna’s experiences with intimate and thought-provoking insight. It draws readers into the challenges that families and friends of anyone with a life-threatening illness will face. Its ferociously honest look at the possibilities of their illness helps prepare readers for situations that may lie ahead, ready or not, and provides answers to questions they didn’t know they had yet.” —Dr. Maria Rallis, PhD, licensed clinical psychologist, Erie Pennsylvania “As a nurse, I believe this story can help so many people with lifethreatening illnesses. It is intimate, compelling, and vivid … drawing me in from the first page. I didn’t want to stop reading. … Thank you for having the courage to share the story.” —Sandy Bryant, registered nurse, Spring Hill, Florida “I believe both my cancer patients and their families would benefit from this strongly impactful story by understanding the challenges each face and how intertwined their roles become. Cancer is a family disease.” —Jennifer Lewis, Cancer and Blood Disease Center, Lecanto, Florida “Reading this powerful story after my husband’s death, helped me realize that I wasn’t crazy! Many of the things I was feeling and doing in my grief were normal. Thanks for helping me understand the grieving process in a realistic and healing way.” —Marlene McCloy McDanial, Cincinnati, Ohio


Even working at Hospice didn’t prepare me for my husband’s illness and death. I wish I had read this book when he was first diagnosed, his last years could have been more meaningful. —Mary Kay Sandell - Hospice, Spring Hill, Florida I felt I knew the author’s daughter...vibrant, fun and strong.  This story  is an inspiration for families  of any critically ill person. Thank you for sharing so openly. —Heather Cummings - office of Dr. Walter Szydlowski, SpringHill, Florida


Table of Contents

Foreword . . . . . . . . . . . . . . . . . . . . . . . . . xiii Preface . . . . . . . . . . . . . . . . . . . . . . . . . . xvii Acknowledgments . . . . . . . . . . . . . . . . . . . . . xix Introduction . . . . . . . . . . . . . . . . . . . . . . . xxi Part 1

The Early Stages Chapter 1 Chapter 2 Chapter 3 Chapter 4 Chapter 5 Chapter 6 Chapter 7 Chapter 8 Chapter 9 Chapter 10

Meet Jeannine . . . . . . . . . . . . . . . . . 1 What Would You Do If … . . . . . . . . . . 16 Of Relative Importance . . . . . . . . . . . 25 Informed Decisions Are Best . . . . . . . . . 28 The Mastectomy . . . . . . . . . . . . . . . 38 New Habits and Challenges . . . . . . . . . 46 On the Mend . . . . . . . . . . . . . . . . 53 A Matter of Control . . . . . . . . . . . . . 59 Bad Hair Day . . . . . . . . . . . . . . . . 66 Missing a Headlight . . . . . . . . . . . . . 70

Part 2

The Middle Stages Chapter 11 Remission Is a Wonderful Thing . . . . . . . 77 Chapter 12 Strike Back . . . . . . . . . . . . . . . . . 82 Chapter 13 About Sex . . . . . . . . . . . . . . . . . . 89


Chapter 14 Chapter 15 Chapter 16 Chapter 17

Control Issues Rear Their Ugly Heads Again . Not Only Smurfs Are Blue . . . . . . . . . Florida Calling . . . . . . . . . . . . . . . Life Is Good . . . . . . . . . . . . . . . .

102 108 116 127

Part 3

The Later Stages Chapter 18 Chapter 19 Chapter 20 Chapter 21 Chapter 22 Chapter 23 Chapter 24 Chapter 25 Chapter 26 Chapter 27 Chapter 28 Chapter 29 Chapter 30 Chapter 31 Chapter 32 Chapter 33 Chapter 34 Chapter 35

Good, Better … Worse? . . . . . . . . . . Living with Cancer . . . . . . . . . . . . . Getting Professional Help . . . . . . . . . The Placebo Effect . . . . . . . . . . . . . The Death of a Dream . . . . . . . . . . . Spa Day . . . . . . . . . . . . . . . . . . A Catastrophic Blow . . . . . . . . . . . . Another Hitch in the Get-Along . . . . . . When There’s a Rally . . . . . . . . . . . . Cankles and Transfusions . . . . . . . . . Being Two-Faced . . . . . . . . . . . . . . A Source of Inspiration . . . . . . . . . . . Don’t Ask; Don’t Tell . . . . . . . . . . . . Being in Denial . . . . . . . . . . . . . . . I Want My Miracle . . . . . . . . . . . . . Dreading the Emergency Room . . . . . . How Do You Tell the Kids? . . . . . . . . Truth and Consequences . . . . . . . . . .

137 144 148 151 154 162 167 173 180 190 193 199 203 210 217 220 229 250

Part 4

The Last Month Chapter 36 Chapter 37 Chapter 38 Chapter 39 Chapter 40 Chapter 41 Chapter 42 Chapter 43

Getting Your Affairs in Order . . . . . . . 259 Mother’s Day . . . . . . . . . . . . . . . . 267 How Do You Prepare for Death? . . . . . . 276 The Beginning of the End . . . . . . . . . 280 Running Out of Time . . . . . . . . . . . 290 Determination . . . . . . . . . . . . . . . 295 Unusual Behavior . . . . . . . . . . . . . . 298 Only a Miracle Can Help . . . . . . . . . 304


Chapter 44 Last Words . . . . . . . . . . . . . . . . . 308 Chapter 45 After the Decision . . . . . . . . . . . . . 313 Chapter 46 Family and Friends Gather . . . . . . . . . 318 Chapter 47 Chapter 48 Chapter 49 Chapter 50 Chapter 51 Chapter 52 Chapter 53 Chapter 54

Couldas, Shouldas, Wouldas that Haunt Me Dying Is Not a Spectator Event . . . . . . . “She’s Gone.” . . . . . . . . . . . . . . . In the Days that Followed . . . . . . . . . Struggling through Sadness . . . . . . . . . Jeannine Stories at the Funeral . . . . . . . The Funeral Service and Burial . . . . . . . Life Goes On—How Dare It? . . . . . . .

323 327 340 347 351 358 366 370

Part V

And Afterward Chapter 55 Chapter 56 Chapter 57 Chapter 58

A New Life—with Baggage . . . . . . . . Living with a Grieving Person . . . . . . . Facing the Firsts . . . . . . . . . . . . . . Jeannine Lives On . . . . . . . . . . . . .

379 382 393 402

About the Author . . . . . . . . . . . . . . . . . . . . 409


Foreword

If you’ve picked up this book, you’re probably facing the serious illness of a loved one. Whether it’s cancer, heart disease, kidney disease, or something else, the journey your loved one will take is going to be largely uncharted … experiential in nature. There is no guidebook—nothing to tell you or them what to do, the steps to take, what to think, or how to act. That’s why this story is so important. And it will help you. Kenna’s story is an intimate one, told through a mother’s eyes. You’ll be privy to the story from two perspectives; a mother’s and a daughter’s, captured by weaving together their thoughts, feelings, and points of view. You’ll experience the impact of cancer on Jeannine’s emotional state and self-esteem, life with her husband and children, her denial regarding what inevitably became an incurable cancer, and much more. You’ll feel enlightened and inspired by Kenna and her daughter’s plight as they struggle with loss and death. Kenna has divided the story into five major parts, beginning just before Jeannine’s breast cancer was discovered and following the next seven and a half years. The chapters reveal where Jeannine was in the progression of her illness, the milestones that hold the greatest lessons, and Kenna’s response as a mother and guardian to her daughter. The final period covers the end of Jeannine’s struggle and, very importantly, what happened after her death, because the story did not end there. xiii


The chapters cover critical struggles such as learning that a loved one has a life-threatening illness, and then the delicate task of sharing that life-altering news with family and friends. Then there is the search for information about the illness, the right doctors and treatments, and how various individuals choose them. Kenna also discusses the unexpected power struggles that can occur when family members feel different treatments should be followed, as well as issues about traditional versus experimental treatments, and drug trials. The story also takes into account the loved ones’ constantly shifting states of mind and the physical and emotional impact of treatments. Finally, the last chapters deal with the unthinkable … the heartbreak of a dying loved one. Although this topic may seem like one you don’t want to think about, you do need to face it … and there is tremendous benefit in being proactive by gathering tips for getting through it. As you read along, you’ll be able to think about what you would do in similar situations. You can take the lessons she learned and use them, build on them, agree or disagree with her actions, decide for yourself if you think she made the right or wrong decisions, and then go on to learn your own lessons. You may see a little of yourself in Kenna, and realize you are not crazy or weak. You are just grieving. The story also covers the truth about “getting over” a death … you don’t, and people shouldn’t expect you to. But, you do learn ways to cope with it over time. This book is for the spouses, brothers and sisters, grandchildren, relatives, and close friends who are dealing with a loved one that has a life-threatening illness, and it is especially for the parents of a child who is gravely ill. Everyone knows that children are not supposed to die before their parents. That’s not the natural order of things. To write this book, after the trauma of her daughter’s death, Kenna had to dig even deeper and find even more courage and strength to relive a parent’s worst nightmare. My hope is that sharing what Kenna and Jeannine lived xiv


through will help others who have to face the same challenges and possibly the same great loss. Coulda, Shoulda, Woulda stands as a testament to the human spirit and will be Jeannine’s legacy to her children and her gift to you. M aria R allis, PhD Erie, Pennsylvania

xv


Preface

None of us is ready for the news. The words are unreal: “You have cancer.” “She has cancer.” “The tumor is malignant.” “It’s stage one, and we should do surgery.” “The type of cancer you have is not curable.” Whatever the words are, after the initial shock and debilitating denial, we will find ourselves afraid and feeling powerless against the illness! Your body reacts, and the emotions take over: shock, fear, anger, uncertainty, stress, continuing denial, and so many more—too many to name. I felt them all, especially helplessness, when I found out that my daughter and best friend was diagnosed with breast cancer at age forty. During the next seven and a half years she was smack-dab in the middle of a battle for life, experiencing ongoing skirmishes, small victories such as a short remission, debilitating setbacks such as the cancer metastasizing in her back, which caused greater battles and eventually defeat … the end of her war. One thing that is certain, however, is that she was a fighter. She was, and still is, my hero. This story is for the families and friends who are helping a loved one face a life-threatening illness, just as I did. It doesn’t matter what the illness; the emotions will be the same. The situations my family faced during Jeannine’s journey will almost certainly mirror many that you will face. By reading Jeannine’s xvii


story, you can be prepared for the things that we were not. You can learn what lies ahead in the battle and, most importantly, how to tap your inner strength to become an everyday hero for your loved one—a role that will prove critical to them. Coulda, Shoulda, Woulda as a title was chosen after my daughter’s passing. We said that often when my family and I second-guessed something we did, or didn’t do, during Jeannine’s illness and surrounding her death. By living these events through this story, you may be able to avoid many of the pitfalls that challenged us and avoid making mistakes that will result in grueling second-guessing … when it is too late. You will be, just as we were, continually thrust into situations that are new, challenging, baffling, frustrating, awkward, and downright terrifying. Your loved one must know that you are totally present for them no matter what. Your role is to be their unsung hero—their rock. To be at your strongest, you need all of the information you can gather on their physical and emotional needs, tempered with massive amounts of understanding, dedication, hard work, strength, and courage! You must be courageous, or you wouldn’t have picked up this book. When Jeannine was ill, I had to summon courage I didn’t know I had to support her in the battle for her life. I believe sharing what I lived through will help others who have to live through the greatest trials of their lives and possibly the greatest loss. I also believe that by sharing Jeannine’s story and helping others, this book will be Jeannine’s legacy to her children and her gift to you. As I wrote this book, I often felt Jeannine standing behind me looking over my shoulder, guiding my fingers on the keyboard, and shaping my thoughts. Without that presence, none of this would have been possible. If this story helps just one person gain some insight, perspective, and strength when helping a loved one through the worst time of his or her life, I believe Jeannine will know it, and when there is a break in the clouds, my best friend will reach down, pat me on the head, and say, “Job well done, Mom.” xviii


Acknowledgments

I want to thank the following people for their assistance with the manuscript completion. Dave Brocki (who read each and every draft, giving me candid and very explicit feedback as well as encouraging me during the several-year process); Belea T. Keeney, my wonderful and patient developmental editor; Carol Mongelli, who helped me verify all of the dates, times, and some details within the book; my long time friends Marlene McCloy McDaniels and Sally Thorne, who read the rough manuscript and gave me the first valuable and honest feedback; and the gals in my Beta Test group (MaryKay Sandell, Sandy Bryant, Heather Cummings, Jennifer Davis and Aimee Addy), who read the next-to-last draft and were kind enough to complete a seven-page questionnaire on the book’s content, giving me straightforward opinions. All of you played a role in getting this completed.

xix


Introduction

Picture, if you will, a woman in her sixties with sun-streaked red hair sitting in a doctor’s waiting room. She has a pen and a tablet in her hand and a very determined look on her face. She is deeply engrossed in what she is writing … scribble … scribble … scribble. When you return to the doctor’s office for a three-month checkup, there she is again—the same woman writing with the same intensity. Scribble … scribble … scribble. She has the same serious look on her face and seems deeply involved in her thoughts. She rarely raises her eyes from the paper, and when she does, you can tell that it’s to think about what she’s writing. You’re curious. What is she writing on that tablet? Has she been writing for the past three months? Who is she? Is she a teacher preparing lesson plans? Is she an adult student doing homework? Why is she so deeply engrossed? Finally you can’t stand it anymore. “Excuse me,” you say quietly. She raises her head and looks into your eyes. “I saw you in here three months ago, and you were writing then, too. Do you mind if I ask what you’re writing?” The redhead smiles and says, “A book.” “Oh,” you respond, still curious. “About what?” “My daughter, Jeannine, passed away from cancer, and I’ve been writing about her struggle with it and the lessons we learned while she was going through it.” To your surprise the redhead continues. “When she was still alive we intended to xxi


write a book that people going through cancer or any chronic illness would find helpful. We wanted to tell her story so that others could get a glimpse of what she went through and be able to see ahead into what they might encounter.” The redhead stops and catches her breath. She puts her pen down. “We wanted to share our experiences. As we discovered, catastrophic illness is not just one person’s disease; it impacts everyone who cares about them.” She clears her throat. There is a shine in her eyes that you can tell comes from holding back tears. “Unfortunately, my daughter died before we had gotten very far past the outline and objectives. I’m writing this book for the two of us. It will be her legacy to the people who read it and to her children.” A shadow of sadness comes over her face. “Kenna,” the nurse calls. “Kenna.” The redhead rises and walks toward the door. “Good luck,” you call after her. She smiles and says, “Thank you,” as the exam room door closes behind her. This will not be the last time you will see her in that office scribbling intensely. The redhead doing the writing was me, and that book is the one you are reading. Most people were curious about what I was writing, whether I was in a doctor’s office, a restaurant, or even when I was a patient in a hospital. I had my pen and tablet with me just about everywhere I went for almost two years. Of those who asked, very few were satisfied with the short answer that I was writing “a book.” When I told people what the book was about, not only were most of them interested, but a great many told me that they or someone they loved had cancer or some type of critical health issue. Unfortunately, many of them had a loved one who had died because of it. Countless people I ran into every day were in pain or grieving about someone with a terminal disease. Many of them wanted to discuss the book. As I shared a bit about the book and the many perspectives it would cover, I was encouraged by these individuals to continue to write. xxii

Coulda Shoulda Woulda - by Kenna Marriott  

In Coulda, Shoulda, Woulda, author Kenna P. Marriott, Jeannine’s mother, shares her daughter’s intimate story. It weaves both mother’s and d...

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