Dream New Dreams

by Jai Pausch

  During that same trip to the West Coast, Randy got to live another dream come true. Hollywood director J. J. Abrams contacted him to come out to Los Angeles, put on a Star Trek uniform, and step into the role as ensign on a Star Fleet vessel. One of his childhood heroes had been Captain Kirk on the 1960s television show. Though he wouldn’t play the captain, being on the ship’s bridge playing a Star Fleet officer was close enough to put Randy over the moon. He got to spend twelve hours on the set, or rather, in Star Trek world, meeting J. J. Abrams, talking with him, having lunch with the crew, and riding a golf cart to and from his trailer. It was an amazing experience. While Randy was sitting at his ship’s console on the set, I wandered the backstage area to learn what the different people did to make a movie. I was amazed how many times they had to shoot the same scene over and over, until at the end of twelve hours, they finally were happy with the thirty-second sequence. I met the costume makers and saw where they cut out the patterns and created the uniforms. I watched makeup artists and hair stylists in action when Randy got his hair cut and had sideburns added to his new hairdo. On the set, the sound man let me listen through his headphones while the actors were speaking. I sat with the crew while the director reviewed the various takes and made decisions for the next take. But mostly I sat in a chair tucked out of the way and knitted a sweater. By the end of the day, Randy and I both had a new appreciation for directors, actors, and the myriad people who work such long hours and put so much energy into making a movie. It was also wonderful to watch Randy have a dream come true and forget about what challenges tomorrow would bring. He loved every moment of that experience, letting not a second go by without savoring and appreciating it.

  In the midst of interviews regarding his lecture and once-in-a-lifetime opportunities like being an extra on a Hollywood film, Randy was approached by a Carnegie Mellon alumnus, a journalist who was in the auditorium for his lecture. His name was Jeffrey Zaslow. Jeff encouraged Randy to use his lecture as a springboard and write a book about the lessons he had learned throughout his life. I had encouraged Randy to do the same thing, calling it The Manual and suggesting he use the couple hundred slides he didn’t use in his lecture. Randy was a wonderful speaker and a gifted storyteller, but he hated writing, and the idea of writing a book by himself was not appealing. With Jeff as his coauthor responsible for the text, however, Randy agreed to tackle the project. Jeff and Randy divided the work according to their strengths: Randy talked; Jeff wrote. It was the perfect partnership, and Randy enjoyed speaking with Jeff. For about an hour each day, Jeff would ask Randy questions and write down his answers and stories. Each story in the book was a life lesson Randy wanted to pass on to our children, knowing he wouldn’t be there when they would be old enough to understand. The book was published in April 2008. Randy, Jeff, and I were amazed that the book became a bestselling phenomenon. The book sales, along with our financial prudence, would mean that I wouldn’t have to worry about money while grieving and raising three little children. That in itself was a huge, unforeseen gift. Like his lecture that went viral and was viewed millions of times on YouTube, Randy’s book seemed to strike a chord with people around the country and the world. The buzz from the lecture begat media interest at the national level, from Good Morning America and The Oprah Winfrey Show, for example. It hit the number-one position on the New York Times bestseller list. “Dying professor writes book on living” was how it was sensationally described. I’ve often been asked why The Last Lecture resounded with people. I think it has to do with Randy’s honesty and positive outlook on life. His stories show the reader how our actions and treatment of other people have a powerful impact on the shape of our lives. That’s a very empowering message and one that I’m looking forward to sharing with our children when they are old enough.

  Although the media attention and cool exciting adventures added to the stress at home, Randy and I were able to strengthen our relationship and deepen our love by taking an interest in what was important to each of us and to our family. That helped us through the more difficult times to come. Still, I had to find the balance that worked for me. I didn’t want death to overshadow and influence every move we made, though I wasn’t trying to ignore Randy’s condition, either. I think Randy worked really hard to make sure he spent time with our children, but he didn’t allocate his time exactly as I had wished. I would have preferred that he be there with them 24/7.

  Randy tried to minimize the impact the media had on our family. He publicly requested that people not talk about his cancer when the children were present or talk to reporters about it. He wanted to make memories for our children, like going to Disney World and having the videographer document the experience as a gift for his children later on. Soon, all too soon, Randy wouldn’t have the energy to go on any adventures. His cancer would step in and demand its due. So far, we had relied upon oncologists to steer our path in the cancer war. Now we would meet another incredible advocate: our hospice nurse.

  Unique Challenges Caregivers Face

  WE TRAVELED TO NEW YORK CITY the last week of February 2008, researching the next potential treatment to beat back those relentless pancreatic cancer cells that had outsmarted the chemotherapy drugs, gemcitabine, Tarceva, Erbitux, and Avastin. That’s what makes cancer so difficult to defeat: those genetically mutated cells not only keep reproducing themselves, but they also evolve to survive in a hostile environment as the body’s immune system and chemotherapies try to kill them off. With each new generation of cancer cells, the patient and doctor have to look for another treatment to attack them at a different area of weakness. Even while Randy was undergoing one therapy, we would be investigating the next potential treatment in an effort to be one step ahead. We also had to keep in mind that Randy’s body was getting weaker because of the cancer’s effects as well as the toxicity of the chemo, which kills not only the bad cells, but the healthy ones. It wasn’t enough for the drug to be effective killing pancreatic cancer cells; it had to have tolerable side effects so that Randy could still enjoy an acceptable quality of life.

  We consulted several oncologists (our local oncologist, the oncologist we worked with in Houston, and the oncology surgeon we met in Pittsburgh who cut out the original tumor) and weighed their different suggestions for therapy, looking at pros and cons. Dr. Michael Lee of Virginia Oncology Associates, Dr. Bob Woolf of MD Anderson Center, and Dr. Herbert Zeh of the University of Pittsburgh Medical Center were incredibly generous in sharing their time and expertise with us. Once we even met with Dr. Zeh on a Sunday so he could review Randy’s latest lab results and give us his opinion about how to proceed next. Neither Dr. Zeh nor Dr. Woolf ever billed us for their time.

  Dr. Woolf introduced us to Dr. Daniel Von Hoff, a highly regarded pancreatic cancer oncologist located in Arizona at the Translational Genomics Research Institute (TGen). Dr. Von Hoff recommended that Randy send tumor tissue samples to his research facility; there his scientists would sequence Randy’s cancer cells’ genome to learn which cancer drugs approved for use would most likely have a strong effect. Thanks to TGen’s work, we learned that Randy’s body didn’t make the SPARC enzyme and would therefore be unable to process Abraxane, which in use with gemcitabine has been very successful in extending people’s lives.* This information, while disappointing, was very important because it identified a drug that would not be effective in Randy’s treatment and saved us time, money, and heartache. If Randy had taken Abraxane, he would have tried the drug for three months before diagnostic imaging would have showed that it wasn’t working to stop the cancer’s growth. We (or rather our insurance company) would have paid thousands of dollars for the treatments. And most important, the cancer would have had significant time to grow and spread unchecked. Now we could move on to other treatments with a higher likelihood of arresting the cancer. We had very few shots left at prolonging Randy’s life, and we didn’t want to waste a single one. Now, based on some feedback from our doctors, we were off to talk with a couple of New
York oncologists who offered unique and promising treatments for pancreatic cancer. After meeting with the first one, who confidently asserted that his treatment would buy Randy another fifteen months to live, I felt numb. That’s it?! I remember thinking to myself. My husband will be here next to me for only a little over a year! I’ll be a widow by the time I’m forty-two! I felt the walls closing in on me, my world getting smaller and smaller. I shared my feelings of disappointment with Randy. I told him I was scared, but I felt selfish for crying over the impact his death would have on me. He was the one dying, after all, and I wanted to be sensitive to his feelings. Randy, for his part, seemed to absorb the data in an unemotional way. He gathered the facts and filed them away to be discussed in depth with our trusted group of advisors.

  The trip wasn’t all doctors’ visits though. It wouldn’t have been an outing with Randy if some magic hadn’t happened. While we were there, Randy and I sat down and talked with Diane Sawyer for an upcoming special about Randy and the widespread impact of his lecture and newly published book. It was the first time I’d spoken on camera or met a television personality. Ms. Sawyer was so personable and her staff so kind that I didn’t feel nervous at all, but rather as though I was having lunch with someone I had recently met and was getting to know better. When she asked me about Randy, I felt as if I was talking with one of my girlfriends about our husbands and our home lives. The illusion would be broken by the cameraman needing to fix a light, the sound man adjusting the microphone, or the makeup artist taking the shine off my forehead. But these interruptions to our conversations were no more disruptive than a waiter coming over to take our order, refill our iced tea, or bring the bill. After the interview was over, Ms. Sawyer walked downstairs with us, said good-bye, and walked off down the street toward home as if we were friends parting after sharing a meal. It was a very special experience.

  Later that night in the hotel room, I was awakened by a loud, strange noise. Looking around in the dark, I concentrated to sharpen my senses and shake the fog out of my head. What was that noise? Then I pinpointed it—the loud rasping was coming from Randy. I knew that sound too well; my first husband had been asthmatic, and I had heard him wheeze many times. Randy was wheezing in his sleep. After I observed him for a while, I went back to sleep because the wheezing wasn’t severe enough to wake him up. The next morning, I talked with Randy about his labored breathing during the night, but he shrugged it off, not taking it too seriously. So I pushed my concern aside as we quickly packed up to catch our flight back home.

  When we arrived at LaGuardia airport, Randy was starting to feel fatigued. With his hands on his hips, he walked lethargically and grimaced in pain. To make matters worse, our flight was delayed for several hours. Randy seemed to be fading fast, and I talked with the airline representative to switch us to another flight so I could get Randy home. There was one seat left on a flight leaving within the hour, so Randy got on and I stayed behind. I called a friend to pick him up at the airport and prepped her about Randy’s condition: lack of energy and difficulty breathing. When I got home later that night, Randy was resting, but not comfortably. His friend and Carnegie Mellon colleague, Jessica Hodgins, was visiting with us that weekend, and we tried to figure out what was going on. Jessica and Randy went to the oncologist the next morning for his weekly visit, but the nurse didn’t find anything wrong, just that he had gained ten pounds in a week. This was good news, or so we thought. Randy had been steadily losing weight as a result of the disease’s progress, the way it appropriated the caloric energy Randy consumed, and the chemotherapy treatments that suppressed his appetite.

  That night after we went to sleep, I woke up because Randy’s breathing sounded like a freight train. I was seriously scared he was going to die in bed next to me! The next morning, I argued that there must be something wrong and that Randy needed to seek medical attention. But Randy and Jessica pointed out that if there had been anything wrong, the oncological nurse would have found it at the previous day’s exam. Jessica tried to act as the intermediary between Randy’s position and mine. We agreed that if the symptoms continued through the weekend, Randy would call our local oncologist on Monday.

  All day Saturday, Randy was uncomfortable and lethargic. He didn’t get much rest that night because he couldn’t lie flat in bed. He couldn’t sleep on his back, and we didn’t have a reclining chair for him to find a comfortable position. We tried propping him up with pillows, to no avail. Sunday morning I argued, cajoled, and begged him to call Dr. Lee, our local oncologist, but now he pushed back even more strongly, saying it was Sunday and he didn’t want to bother the doctor on the weekend in the event this turned out to be nothing. He argued that in the future, when he really did need help, Dr. Lee would be less likely to believe him and come to his aid.

  In my gut, I knew something was seriously wrong with Randy. It didn’t seem right that he couldn’t lie flat on the bed and breathe, or that he had no energy. It was killing me to watch him in so much discomfort, unable to sleep or rest, but I wanted to be respectful of Randy’s choice of when he wanted to seek medical care and when not to. I called Dr. Reiss to ask her advice, and she helped us devise a compromise: Randy would call the oncology office to talk with the doctor on call and follow up on Monday if the symptoms persisted. Randy was very angry with me, saying he did not want me to hijack his health care. He wanted to be in charge of when he called the doctor and what treatments he would accept. He absolutely did not want me to act on his behalf or go behind his back. He wanted me to help him, but there was a definite line in the sand I was not to cross. I agreed to respect Randy’s right to seek treatment when he felt it was necessary. But I felt it terribly unfair that I had to watch him suffer and not be allowed to do anything that could make it better. I resented that Randy did not weigh my opinion more heavily and that he was so resistant to calling the doctor to tell him about his symptoms. There would be many times when Randy would assert that he was in the driver’s seat, and I was expected to come along but never to touch the wheel. He wanted me to be a part of his health care team, to go with him to all his appointments, to sit with him through the treatments, to give up time with our children, and to research treatments. And yet I was not to overstep my bounds of being “the help.” I had the responsibility of caring for him without the authority to act, and it was a very frustrating place to be.

  Luckily, I had Dr. Reiss and Jessica, as well as others, to talk to and commiserate with. I also used my journal as a way to blow off steam. On those blank pages, I could write anything I felt, regardless of how inappropriate or irrational it was, without hurting anyone or suffering any consequences. So often when I felt angry or scared or overwhelmed, I found that by writing in my journal I could get those feelings out—purge myself in a way. My entry on Wednesday, February 6, 2008, is pretty typical:

  Randy was up all night battling chemo side effects. I found him downstairs with his teeth chattering, body shaking, and running a 102 degree temperature. That was at 6:45 a.m. So I was running between him and the kids. I hate that. Rachel took Chloe and Logan out of the house while I got Dylan to school. Dylan was a big help this morning: he made a card for his dad, helped me paint swatches on Chloe’s wall … Randy asked me to take his pee to the oncologist’s office and pick up his Creon [a drug that helps improve the digestion of food] prescription. I ran and did that and got home in time to get Dylan from the bus stop.… Dinner was chaotic as usual. When Rachel left, I felt scared. Scared I wouldn’t be able to take care of Randy and the kids. Randy and I got to spend time talking. He said today was what it was going to be like when the chemo stopped working. I told him this day was scary because I felt blindsided again by something unforeseen—where we had focused on the next treatment, here we are with renal failure. But we should learn something soon.

  Some journal entries were much longer, more toxic in language than the example above, but it was good for me to get these emotions out and on the page. If the way I was feeling was too
embarrassing to share with others, my journal provided a safe haven—a nonjudgmental, neutral retreat for me to escape to and express my feelings.

  During this latest crisis, Randy relented and called his oncology practice. The oncologist on duty prescribed a diuretic medication to get rid of the fluid in his lungs and edema in his legs and belly. Randy’s weight gain, as noted by the nurse the previous Friday, had all been fluid buildup. The diuretic worked, but not well enough. He could sleep lying down, but any physical exertion, including going up or down the stairs, left him breathless. Finally, he called the oncologist’s office at the beginning of the week, and we went in for some tests. The nurse confirmed that Randy was suffering from congestive heart and renal failure. While the nurse and Randy continued discussing his condition and options, I used my Kindle to do a quick Internet search: renal failure meant Randy’s kidneys couldn’t rid his blood of impurities and concentrate urine, while congestive heart failure meant his heart wasn’t pumping enough blood throughout his body. Once I had an understanding of Randy’s condition, I turned my attention back to the conversation. Randy and the nurse talked about his appointment with the nephrologist (kidney doctor) at the end of the week. As he was leaving, I lagged behind and asked the nurse if Randy was going to die from congestive heart failure and renal failure. I wanted to know if we were at the end of our journey. I was so scared, unsure how to evaluate and respond to the information we had. Our oncology nurse told me very gently that Randy wasn’t going to die right now from renal and congestive heart failure and that he would recover from these conditions. That’s all I needed to know at the moment. My husband and I went home and processed in our own way what we had learned; keeping our hopes pinned on the appointment with the nephrologist on Thursday, March 6.