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YOUR
CANCER
ROAD MAP
NAVIGATING LIFE WITH RESILIENCE
KIM THIBOLDEAUX
BenBella Books, Inc.
Dallas, TX
The content of this book is provided for informational purposes only. It is not intended to be used as a
substitute for medical advice provided by a physician. Readers are encouraged to discuss the topics in
this book with licensed medical professionals. Patients should always consult their doctor or a health
care professional about the diagnosis and treatment of medical conditions including cancer, its
symptoms, and the side effects of treatment. Likewise, it is advisable to talk with a health care
professional before making changes to a diet or exercise routine.
Your Cancer Road Map copyright © 2021 by Cancer Support Community
All rights reserved. No part of this book may be used or reproduced in any manner whatsoever
without written permission of the publisher, except in the case of brief quotations embodied in
critical articles or reviews.
BenBella Books, Inc.
10440 N. Central Expressway
Suite 800
Dallas, TX 75231
www.benbellabooks.com
Send feedback to [email protected]
BenBella is a federally registered trademark.
First E-Book Edition: June 2021
Library of Congress Control Number: 2020056662
ISBN 9781950665914 (trade paper)
ISBN 9781953295347 (electronic)
Editing by Jamie Kudera
Copyediting by Jennifer Greenstein
Proofreading by Christine Florie and Michael Fedison
Medical review by Craig Cole, MD
Indexing by IndexBusters
Text design and composition by PerfecType, Nashville, TN
Cover design by Faceout Studio, Molly von Borstel
Cover image © Shutterstock / christographerowens
See interior image credits on page 285.
Special discounts for bulk sales are available. Please contact
[email protected].
This book is dedicated to all people impacted by cancer.
May you find strength, healing, and hope.
CONTENTS
Foreword by Jill Biden
Introduction
SECTION ONE
JUST DIAGNOSED
Chapter 1 Take a Deep Breath
Chapter 2 Know Your Diagnosis and Stage of Disease
Chapter 3 Build Your Team
Chapter 4 Understand Your Treatment Options
Chapter 5 Learn About Genetic and Genomic Testing
Chapter 6 Make an Informed Treatment Decision
Chapter 7 Get a Second Opinion
Chapter 8 Ask About Clinical Trials
Chapter 9 Get to Know Your Insurance Coverage
Chapter 10 Ask to Be Screened for Distress
Chapter 11 Ask About Fertility
Chapter 12 Young Adults and Cancer
Chapter 13 Set Up Advance Directives
Chapter 14 Care for the Caregiver
SECTION TWO
ACTIVE TREATMENT
Chapter 15 Time to Gear Up for Treatment
Chapter 16 Learn How to Manage Side Effects
Chapter 17 Talking to Your Kids About Cancer
Chapter 18 Find Emotional Support
Chapter 19 Build Your Digital Support Network
Chapter 20 Focus on Nutrition
Chapter 21 Exercise and Mind-Body Techniques
Chapter 22 Focus on Finances
Chapter 23 Sex and Intimacy
Chapter 24 Managing Work and Cancer
Chapter 25 What If Treatment Doesn’t End?
SECTION THREE
AFTER TREATMENT IS DONE
Chapter 26 Tools for Survivorship and Beyond
Chapter 27 Survivor Care Plan and Medical Follow-Up
Chapter 28 Managing Fear of Recurrence
Chapter 29 Hospice and End of Life
Acknowledgments
Cancer Support Community Board of Directors
Cancer Support Community Professional Advisory Board
Cancer Support Community Affiliates
Cancer Patient Advocacy Groups and Resources
Federal and State Programs: Insurance and Employment
Resources for Financial Support
Glossary
Index
Notes
Image Credits
About Kim Thiboldeaux
FOREWORD
Jill Biden
G rowing up the oldest of five girls in a suburb of Philadelphia, I always
wanted to be strong like my mother. She knew who she was—she was kind,
self-possessed, always ready with the right words to say, and never
someone to be carried away by her emotions. I wanted to be the person who
was strong for everyone.
As a teacher of writing, my students often confide in me. They call me
when they are distraught, and share their triumphs. I have felt lucky to be
strong for them when they needed me.
A few years ago, however, I had to tell my class that I would miss the
next session for personal reasons. By that point in the term, we had all
become close, and no one seemed to have any real filters anymore. They all
began shouting, “Where are you going, Dr. B.?” I told them, “My sister Jan
is having a stem cell transplant. Today is her first treatment, and she’ll have
to stay in the same hospital room for six weeks.” Standing there in front of
the class, however, I could feel my resolve break and I suddenly lost my
composure. I had to pause, as the next words caught in my throat. “I just . . .
need to be with her.”
I quickly faced the whiteboard so the students wouldn’t see the tears
filling my eyes. When I turned back around, every single student was
standing. They made a line and came up to hug me, one by one.
Until that moment, I hadn’t realized just how much I needed their
strength.
Cancer has been a dark thread that has run through my life, as it has for
so many Americans. In just one year, I watched four friends struggle with
breast cancer. Cancer took the lives of both my parents. My son—my brave,
funny, bright young son Beau—fought an excruciating fight against
glioblastoma for over a year before we lost him.
Though medicine continues to advance and hope grows every year,
there is still no word as frightening as malignant. No one should have to go
through it alone. We can’t; we need our community to support us. That’s
true for families and caregivers of patients as well.
That’s why this book and Kim’s voice are so critical.
When I met Kim Thiboldeaux, right away, I knew we would be friends.
We are so alike in the ways that matter: both one of five kids, both Philly
girls, both Eagles fans. More than that, though, we are both passionate
about helping cancer patients and their families get the support they need—
and ending this disease as we know it.
When Kim served on the Biden Cancer Initiative’s board of directors, I
saw her leadership in full force, driving progress and facilitating
groundbreaking partnerships. In 2019, we visited the Navajo Nation in
Arizona together to see the realization of that work, the opening of the first-
ever full-time cancer care and support center on an American Indian
reservation.
Kim understands how difficult the cancer journey can be—not just
because patients face sickness and even death, but because a cancer
diagnosis is a door to a complicated and foreign world. Patients and their
families must navigate complex insurance and payment systems, learn
obscure medical terms, understand complicated treatments, advocate for
their health, and have difficult conversations with the people they love. And
they must do it all without a road map or guide to show them the way. Until
now.
It doesn’t matter how strong you are. We all need people to lean on at
times. A hug, a kind word, a steady voice, or a piece of advice—sometimes
they are the lifelines that get us to the other side of anxiety and despair. I
hope Kim’s experience, wisdom, stories, and strength can be a lifeline
through your journey. I hope this book reminds you that you are not alone.
INTRODUCTION
O ver the past twenty-five years, I have talked to and met with
thousands of cancer patients and their loved ones across the country and
around the world. Among them are complete strangers and people who have
known me since I was a child. They include friends, colleagues, neighbors,
and contemporaries, some who are here today and some gone too soon.
Every story is different, unique, and personal. Yet over the years, I
began to see common threads through each narrative. Each represents a life
disrupted, a fear of the unknown, a desire for hope. Each person wants to
feel confident in seeing the right doctors and making the right decisions.
And each yearns for more time to fulfill unrealized dreams and aspirations.
I am often thrust into a stranger’s life at their most difficult and
vulnerable moments. I see each of these interactions as a privilege—a
delicate thing to be cherished and safeguarded. I often say I have a front-
row seat to the triumph of the human spirit. And in the end, I have received
more from these exchanges than I have given.
This book is written to be a trusted ally for anyone diagnosed with
cancer. It is called Your Cancer Road Map because it carefully and
thoughtfully plots out the journey from start to finish. It includes
instructions for navigating detours and warning signs, and tips to take in the
scenery along the way, perhaps through a different lens. You’ll encounter
men—and women—at work, U-turns, and speed bumps. And also
roadblocks, which can be discouraging and frustrating. Ultimately, this
book is intended to shine a light and give you the tools and resources to find
your way. I often say to folks, “There isn’t a right way to take on cancer—
there is only the way that is right for you. You’re in the driver’s seat and
you will decide which road to take and how you choose to get to your
desired destination.”
The subtitle of the book is Navigating Life with Resilience. I have
thought a great deal about resilience lately. What is resilience? How does
one find it within oneself? Can it be discovered and assimilated from
inspiration around us? I believe resilience comes with heightened self-
awareness and an ability to embrace change and let go of the things that are
out of our control. Resilience is like a muscle that needs exercise and
strengthening. Becoming resilient takes practice—and patience. And
building these skills will enhance your ability to recover and move forward.
I encourage you to write notes in the margins of this book, circle and
highlight things that capture your attention or resonate with you, and dog-
ear the pages. Keep it in your purse or briefcase or backpack and take it
with you to doctor’s appointments and chemo infusions. Read it in the late
hours in bed or in the backyard with a cup of coffee. You can read a chapter
here and there and put the book down to revisit later. Read it again when
you need tips or resources. Pass it along to a spouse or friend to peruse.
My hope is that you use the tools in this book to become more resilient
and more empowered as you face cancer. And I hope that you find grace
and fortitude along the way and that you share our belief that community is
stronger than cancer.
Visit the companion website to discover
more about topics discussed in Your
Cancer Road Map, find easy access to
resources, and get to know author, Kim
Thiboldeaux.
cancersupportcommunity.org/YourCancer
RoadMap
SECTION ONE
JUST DIAGNOSED
