Dream New Dreams (13 page)

The appearance on
Good Morning America
was the first of several incredible experiences that resulted from Randy’s lecture. For many of them, I chose to remain at home with our children, keeping up with the daily demands of domestic life and child rearing. Meanwhile, Randy met Oprah Winfrey and Dr. Oz, gave a lecture
on time management at the University of Virginia, and spent a few hours meeting and playing football with the Pittsburgh Steelers, courtesy of ABC News and Diane Sawyer. I was thrilled that he had these extraordinary opportunities and that his final lecture had resonated so strongly with people. But at the same time, I wanted more of his energies to be directed toward our children.

Work and home life had always been an ongoing, contentious balance for Randy and me. When we dated, I could call Randy up any night of the week at midnight, and he’d still be in the lab. After we were married and had children, Randy would come home for dinner and stay until after the kids were asleep, then head back into the lab or work on his computer until midnight. The excitement and interest generated by his lecture became the new, all-consuming time sink, as his students and research had been before he became ill. I coveted every minute we had with Randy, and I loathed the new demands placed on his time, especially those that took him away from our house and our children. Randy and I were constantly negotiating the balance between his external distractions and our family.

As with other issues we faced in our marriage, Randy and I talked honestly and openly about what we were feeling. I continued to want all of my husband’s time to be devoted to our family. Randy wanted to ride the wave of interest in his lecture, to allow more people to hear and to benefit from his talk, as well as to enjoy new, exciting experiences. I had to accept that it was his life that was coming to an end and that he had to finish it the way he wanted. So I had to figure out a way to be supportive of Randy and accompany him on the trips or participate in the things that he deemed important, while maintaining a normal routine and life for our children.

In the fall of 2007, our children still did not know that Randy’s cancer had returned after his surgery and treatments and that it had spread to different parts of his body. They didn’t know Randy’s time was so limited. I wanted to lead a life that to them seemed normal in every way, so they wouldn’t know by our actions that something was wrong. For example, we were not going to eat steak and lobster every night for dinner as if it was Randy’s last meal. We weren’t going to travel to all the places he had never visited. Many times, I felt guilty about not telling the children the truth about their father’s condition, but then I would remember that they didn’t have the ability to handle the stress of the knowledge that their father would die very soon. I was juggling two different sets of needs: Randy’s desire to live life to the fullest before the cancer took away all his energy and the children’s high demand for parental interaction.

How does one balance homework, housekeeping, soccer games, and birthday parties with talking to reporters, meeting with photographers, appearing on national television, and acting in a Hollywood movie? This didn’t seem like a normal lifestyle to me, and it wasn’t one to which we were accustomed. I didn’t know how to explain it to our children when we had a photographer and crew come to our house at six a.m. to set up for a shoot or when a videographer from a major network shadowed us at Disney World to document our experiences and memories of the trip. Instead of trying to justify or explain the camera crew’s presence, I simply presented the information as a fact and didn’t offer an elaborate explanation. Because the children were so young, they didn’t question me. If they did ask, I replied that Daddy had written a book that a lot of people liked. That was answer enough, and the children moved on to other interests. Randy wasn’t concerned with how the
children interpreted these events. His focus was on squeezing every joyous moment he could out of the time he had left. And he wanted me to share them with him.

I learned to evaluate each opportunity Randy was given and decide whether or not it was essential that I go with him. He had told me several times that he wanted me to see the Magic Castle, a Los Angeles club. Only magicians are members; they go there to practice their tricks and moves and perform shows for other magicians and guests in attendance. In the fall of 2007, Randy and I went to the Magic Castle with two friends and had the time of our lives, and Randy was thrilled that I enjoyed it as much as he thought I would.

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.

W
E 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.