Dream New Dreams Read online

  Copyright © 2012 by Elizabeth Jai Pausch

  All rights reserved.

  Published in the United States by Crown Archetype, an imprint of the Crown Publishing Group, a division of Random House, Inc., New York.

  www.crownpublishing.com

  Crown Archetype with colophon is a trademark of Random House, Inc.

  Library of Congress Cataloging-in-Publication Data

  Pausch, Jai, 1966–

  Dream new dreams : reimagining my life after loss / Jai Pausch. —1st ed.

  p. cm.

  1. Pausch, Jai, 1966– 2. Women caregivers—United States—Biography. 3. Pancreas—Cancer—Patients—Family relationships—United States. 4. Pausch, Randy—Health. 5. Death—Psychological aspects. I. Title.

  RC280.P25P38 2012

  616.994370092—dc23

  [B]

  2011046264

  eISBN: 978-0-307-88852-5

  Jacket design by Michael Nagin

  Hand lettering on jacket by Mary Ciccotto

  v3.1

  To all the people

  who care for ill and dying loved ones

  and who struggle to do the best they can

  without the proper training and resources to help them

  CONTENTS

  Cover

  Title Page

  Copyright

  Dedication

  Foreword

  1 Living the Dream

  2 Shattered Dreams

  3 Face the Problem

  4 Shuttling Between My Husband and My Children

  5 Help! I’m in Over My Head

  6 The Toll of Caregiving

  7 Cancer Blindsides Us Again

  8 The Magic of the Last Lecture

  9 Unique Challenges Caregivers Face

  10 Decisions

  11 Talking to Children About Cancer and Death

  12 Grieving

  13 The Year of Firsts

  14 Untethering Our House from the Past

  15 Single Parenting: My New Frontier

  16 Taking Care of Me

  17 Magic: Lost and Found

  18 To Date or Not to Date

  19 Giving Back: Pancreatic Cancer Advocate

  20 Dreaming New Dreams

  Resources

  Acknowledgments

  FOREWORD

  In 2008 my husband died after a two-year battle with pancreatic cancer. While he received the best medical care possible, from the time he was diagnosed in 2006 until his death, I was his primary caregiver. In spring 2009, I participated in an event sponsored by my local Jewish Community Center (JCC) called the Week of the Caregiver. It was my first time speaking about my experience. In putting together my talk, I had to force myself to examine the struggles I had faced over the previous couple of years. First, I had to convince myself that my voice and perspective were valuable. Then I had to pull together my hard-won lessons, striving to take the ugly, nasty things I had been through and do some good with them; to spin some straw into gold so to speak, and to share them with others who were walking or might walk the same path. I was reassured to see that what I had to say struck a chord. The hundred people in the audience not only listened attentively, but some also took notes.

  After the talk, I shook hands and listened as people shared their own experiences. Their grief and the guilt they felt for mistakes they perceived they had made echoed some of my own feelings. I asked myself, Where is the help for folks like us who tirelessly give to our dying loved one? Why wasn’t the medical community concerned about the people who struggle to carry the medical burden while also meeting normal everyday demands? I wanted to hug them all and wipe away their self-doubts and replace it with self-forgiveness. I wished for a magic wand to create a support network at every oncology clinic for the caregiver whom the medical community assumes can and will manage complicated medical care while grappling with their own complicated and sometimes overwhelming emotions. Though I did achieve my initial goal, I walked away feeling like there was so much more that needed to be done.

  Over the next two years, I had other opportunities to talk about the impact cancer has had on my life and on my family. Each time I spoke to a group or met with a cancer-related medical professional, I brought the caregiver’s role and needs to their attention. I wanted to shine a spotlight on the person in the treatment room who is so often overlooked, along with his or her needs and abilities. Although I couldn’t travel and give talks and advocate for the caregiver’s silent plight, I thought a book could reach so many more people.

  I wanted my story to be useful to others, not a tell-all about the professor who wrote The Last Lecture. I started by using my JCC talk as the basic framework for my narrative and explored the unique challenges and complex issues I had faced as a caregiver. I spoke with grief counselors and palliative care doctors and met with dozens of caregivers for both cancer and Alzheimer’s patients. Although each person’s experience is unique, the overarching struggles are universal. Mining my own experiences forced me to dig into a wound still raw and painful, which had both positive and negative effects on me.

  On the upside, writing has been a tremendous aid in helping me to heal myself; the process allowed me to see my strength and resilience. I’ve been able to move forward in a new direction for myself and my family. It’s also given me the opportunity to come to peace with a lot of bad stuff that happened.

  On the down side, I’m not able to put my past behind me completely. My years with Randy get brought up in some way, shape, or form every day. It could be an e-mail from a pancreatic cancer advocacy group or someone recognizing my name that resurrects my past. Three and a half years after Randy’s death I still suffer from nightmares, talking in my sleep as my subconscious relives the most traumatic moments during that very trying time in my life. My new husband, Rich, wakes me from my nightmares, quiets my sleep talk, and soothes me back to sleep. It’s not the way I wanted to start a new chapter in my life. It’s not the happy Hollywood ending I was hoping for, but I know my story doesn’t end with this book.

  Ultimately, my dream is that my story will legitimize what caregivers undergo willingly and bravely as they care for a person they love. Patients need and deserve support, but it’s time for us as a community to understand the suffering that is shouldered, sometimes silently, by our family members, neighbors, friends, and coworkers. We need to offer help to these people, to develop and implement programs at cancer centers and other organizations. We need to empathize with that person taking on the duty of overseeing the patient’s care and well-being. Finally, we need to care for the caregiver.

  Living the Dream

  SO I CAN PICK UP the block and throw it?” Randy asked incredulously. He was learning about computer graphic research at the University of North Carolina, where I was working while studying for my PhD exams in comparative literature. Randy was a computer science professor at Carnegie Mellon University in Pittsburgh researching virtual reality and human-computer interaction. Standing in the virtual reality lab, he looked like a thirty-seven-year-old kid playing a Wii video game, game controller in hand. Instead of viewing the computer-generated world on a television mounted on a wall, he was looking at a screen inside a specialized helmet. Nowadays, many Americans are familiar with holding a device to make objects or avatars move within a video game. But fourteen years ago, this technology was not yet mainstream, nor was it a game; rather it was an experiment to see how compelling virtual reality could be. In this demonstration, throwing the block was not part of the program’s functions, but Randy didn’t know that, and he was asking a million questions. I had noticed his inquisitiveness earlier in the morning as we toured other parts of the virtual reality lab. Walking beside him, I could tell he was genuinely interested in our research, soak
ing it all in. It was obvious to me he was smart. What else would you expect of a Carnegie Mellon professor? But Randy was surprisingly down-to-earth. When I had first met him that morning, and in previous e-mails, he insisted I call him Randy, not Dr. Pausch. He had no need to stand on ceremony or demand acknowledgment of his title, which was a very refreshing change from the norm in academia. I felt instantly comfortable with him even after having only just met him. And I wanted to get to know him better.

  I was taken with his easygoing and playful nature. I guess that’s why I tricked him. “Oh, yes, you can throw the block into the next room”—I lied when Randy was trying out the pit demonstration. So he picked up the block with the game controller, raised it over his head and gave it a good toss. “It didn’t work!” he exclaimed. “Well, you must have released the button too soon,” I said. I looked around at the graduate students who were running the research demonstration. We smiled and laughed a little, all in on the joke. Randy tried several times to pick up and throw the block until he must have heard us laughing. Then he lifted up the helmet, looked at me with a twinkle in his eyes and laughed along with us. It was love at first sight between us. I could see this six-foot-tall, thick-dark-haired, smart man who had a great sense of humor and was so secure with himself. He must have thought I was attractive and maybe a little bewitching because he asked me to meet him that night. Of course, I was thrilled and accepted his invitation. I literally sat by the phone waiting for him to call after his dinner meeting. As the time of his expected call came and went, I figured he had changed his mind, that I had been imagining the connection I had felt with him earlier in the day, that I had fooled myself into believing his intentions were serious. Then the phone rang. Randy apologized for calling me after he said he would, but the meeting had run late. He really wanted to meet me and hoped it wasn’t too late. I picked up my purse and headed out the door with my heart pounding.

  It’s bittersweet for me to think about how we first met and started dating, how I came to trust him and believe in him enough to try marriage one more time. I had had a rocky first marriage to my college sweetheart, which left me cynical about marriage and my ability to find a man who could stay true to those timeless wedding vows to love, honor, and cherish. Looking back on those first days and weeks pains me so much. It tears open the wound that has only begun to heal. It hurts to think about that first date when we walked along Franklin Street in Chapel Hill and held hands. I had to reach for his hand to hold him back a little, to keep pace with him, because he was such a fast walker and I was much slower. I remember how soft his hands were, how hairy his knuckles were, and that he bit his fingernails just like me. When we held hands, he would sometimes rub my fingers close to the knuckle, which melted away all my stress and left me boneless. It wasn’t a “yin and yang” attraction. It was that we somehow fit together—intellectually, playfully, and emotionally.

  He was in Chapel Hill for only a couple of days, and his time was booked for meetings with university faculty. But on the second day of his visit, Randy asked if I would like him to stay another day so we could go out again. I was flattered and said yes. After I got off from work, he rode the public bus with me back to my apartment. He lost no time in changing his schedule, making phone calls on his cell phone right there on the bus. Not many people had cell phones at that time and Randy looked very out of place making business arrangements. I had never before had someone move heaven and earth to be with me. I felt so special, so lucky for this sweet treatment.

  Later that evening, we debated graduate school stipends, student loans for people pursuing degrees in professions that wouldn’t afford the students a salary on which to pay back the loans, and so much more. We fit a lot in during that inexpensive Chinese dinner.

  Randy was so handsome to me, but it takes more than looks to make one truly fall in love. I guess it must have been the combination of intellect and fun, geek and athlete, technology and the arts, honesty and integrity that drew me to him. I loved that he was a serious scientist and an intellectual, but not a snob. He didn’t take himself too seriously, even though he voiced serious opinions and felt strongly about his convictions. He was full of life: that person who brings energy into the room and to whom you naturally gravitate. And the way he looked at me, even from the first moment, it was like nothing I had ever experienced before, and maybe never will again.

  After that encounter, our romance was a whirlwind. He lived in Pittsburgh, Pennsylvania, and I in Chapel Hill, North Carolina, so naturally there was lots of travel involved to nurture the relationship. Sometimes I would travel up to Pittsburgh where he would show me the city, introduce me to friends and colleagues, and quietly begin to integrate me into his life. Love started to bloom, though I could not see it. I wasn’t sure I could believe that such a man would be serious about me, about a woman who was already divorced at thirty and still working on her PhD in literature.

  As our courtship continued into the fall, I brought him to my grandparents’ home in Chesapeake, Virginia, for Thanksgiving. As a gift, he brought a gingerbread house for my grandmother that he’d made himself in the evenings after work. How surprising to find a man who baked and created gingerbread houses! And he did this from scratch and from a pattern he had made out of cardboard, not from a kit purchased at Michaels. The effort and attention he put into creating and transporting the house spoke volumes about him and the things he valued. He could have bought a bouquet of flowers to my family gathering, but Randy went the extra mile to make a good impression. It showed the real creative side of him, too, one that didn’t do ordinary.

  Later on, he took me to Columbia, Maryland, for his mother’s and father’s birthday celebrations. His gift to his father was simple: homemade chocolate chip cookies. In Randy’s opinion, gifts weren’t about showing how much money one was willing to spend, but rather about the amount of heart one put into it. His philosophy resonated with me, and I grew to love and respect him even more.

  Soon we were spending every weekend and every holiday together, and Randy introduced me to some unforgettable experiences. It could be a behind-the-scenes tour of a theme park design at a popular amusement park or meeting people who were full of intriguing ideas. He invited me to come to business dinners and on business trips, even though I wasn’t a computer scientist. I loved the intellectual stimulation, the conversations that challenged my preconceived notions, and the eclectic subject matter. Knowing I didn’t have his technology background, Randy explained to me the basic ideas behind the subject at hand so I would be able to participate. He did this in a considerate, matter-of-fact way without any condescension. Moreover, he would ask me my opinion or impression, listening carefully, demonstrating how much he valued my input. As the weekends flew by, the weekdays stretched out longer and longer. It was getting harder not to be with the guy all the time. The distance between us couldn’t be closed by a telephone call.

  I vividly remember a field trip to Chicago with his Carnegie Mellon master’s program students. We saw Blue Man Group for the first time together. One of the most unique theatrical performances today, Blue Man Group involves three actors painted blue from head to toe who never say a word on stage, but rather use drums, technology, and body language to communicate with and dazzle their audience. It was so novel, unlike any theatre we had ever experienced. At the end, Randy was blown away. He turned to me with tears in his eyes and said, “I’m so glad you were here to experience this with me.” Later that night, we went to see Tony and Tina’s Wedding, a play in which the audience is treated as guests at the wedding, even participating in the action. So when the actors called for all the single ladies to come up to catch the bouquet, Randy and his colleagues insisted I go up. To my surprise, I caught the bouquet. You can only imagine the ribbing we both got from his colleagues and students. After the trip to Chicago, I knew it wouldn’t be long before Randy formally proposed to me. But I wasn’t sure if I could let go of my fears and truly give my heart. I worried that I would be trapp
ed once again in a marriage with a husband who would not work on problems but continue destructive behavior, and I would have to live unhappily or go through a painful divorce. Was I going to let my past cloud my future? Would I stay tied to that one failure or recognize my strength and try again? These were some of the questions I asked myself again and again.

  He was fun, he was witty, but most important, he was caring. I knew he loved me because he showed me, not just told me. Randy’s actions revealed his heart and character, in little ways, like buying me an umbrella when I didn’t have one, or big ways, like promising me he would pay all expenses to move me back to Chapel Hill in the event our relationship soured. Though I had great trepidation, I trusted Randy and our relationship, and I agreed to move to Pittsburgh. I was still scared when I gave my two-week notice as outreach coordinator and office assistant at the Department of Computer Science, told my friends and family I was moving, and started looking for an apartment and job in Pittsburgh. Every time I drive up to Pittsburgh on I-70 W and the Pennsylvania Turnpike, I remember my trip with Randy in the U-Haul truck with all my worldly possessions packed in the back and car in tow. Those feelings of fear and excitement bubble up when I remember Randy behind the wheel, looking at me, smiling, reaching over to hold my hand. After one failed marriage, it took courage to trust someone again. But Randy made it easy for me to believe in him and in us. I knew our marriage would never end in divorce. I knew it was “until death do us part”; I just didn’t know it would be so soon after uttering our vows. We were married on May 20, 2000, in Pittsburgh, under two large oak trees in a simple ceremony with just close family and a few friends in attendance.

  Even after Dylan, Logan, and Chloe came along, the magic continued. Randy loved being a father and wanted enough children “to pile into the car,” as he explained to me. I was thirty-four years old and Randy forty when we started our family. So there wasn’t a lot of time between children. Dylan was born at the end of 2001. Logan came along two and a half years later, and Chloe nineteen months after Logan. Three children in five years! Small children put a lot of stress on a marriage, and ours was no exception. When Dylan was born seven weeks premature at two pounds fifteen ounces, Randy and I were terrified of losing our first child. I remember Randy went into his problem-solving mode to create a working schedule where my mom, me, and he all took turns getting up with Dylan every three hours to feed and change him, and record his input and output so the pediatrician could measure his growth, even going so far as to describe the consistency and color of his stool and how he ate. (I believe I still have some of these charts in a file. Imagine describing infant poop at three a.m.!) The danger when he was small was that he was too weak to cry when he needed food, so we did this for about three months straight until Dylan gained enough weight that we could wait for him to cry out when he was hungry. Very exhausting. I don’t think Dylan ever slept through the night until he was about five years old and had learned to put on a story CD to listen to when he woke up in the middle of the night. We learned during this time that Randy did not do so well waking up in the middle of the night, for he couldn’t get back to sleep and would then be exhausted in the morning before going to work. Because I could stay home and nap during the day when the children napped, I took over the night shifts to relieve Randy and make his life a little easier. Give and take. That’s what we always did together to work through the tough times and to make our lives better together.