Dream New Dreams (10 page)

I wish I could have been lying next to my husband, turning to him to help me through these sleepless times. I had so many wonderful things to appreciate, to celebrate with him—how our family was growing, how we had remodeled our house to accommodate that growth, and how beautiful the moon was on these wintry nights. Together we had put so much thought and energy into the house project. This was our dream home, where we were to raise our family and where Randy and I planned to live until the children were grown and Randy retired from the university.

But Randy and I were in some ways worlds apart now. Instead of sleeping upstairs in our master bedroom with its beautiful windows looking out over the amazingly large city backyard, Randy was sleeping in the basement with the heat jacked up. The physical distance between the two of us translated into an emotional one. I was constantly tired from wearing so many hats—caregiver, mother, and house manager. I woke with Chloe at around one a.m. to give her a bottle, and then I was back up at six a.m. when the two boys were ready to start the day. I felt as if Randy didn’t appreciate all that I was doing and how hard I was trying. For his part, he believed I wasn’t spending enough time with him, that I was afraid to sit with him and be near the sick guy. Our wounded feelings festered until a couple of our friends suggested we see a counselor. They went so far as to argue that if Randy survived the cancer, our marriage might not. But we didn’t need a marriage counselor; we needed someone who knew how to help people dealing with life-threatening illness and all the chaos and stress it could bring.

During a visit to our local Pittsburgh oncologist, Randy asked for
a recommendation for someone we could talk to who had experience with people in our situation. The oncologist knew of a psychotherapist who worked with cancer patients and their families. And that’s how we met one of the most wonderful, kind, insightful, and intelligent people I have ever met: Dr. Michele Reiss. We were fortunate to find a local practitioner who focused on mental issues that arise in battling cancer.

From the first time we started talking with Dr. Reiss, she became an integral part of our cancer team. Whereas the oncologist and the platoon of other doctors focused on the physical aspects of Randy’s cancer—how to stop the disease from spreading, control pain, monitor nutrition, and prolong life—Dr. Reiss’s specialty as a psychotherapist addressed the mental health issues. Stress is something we all experience, but in excess and over long periods of time, stress has a profound effect on a person’s mental and physical state. More and more medical studies are studying the impact of stress on both the cancer patient’s and the caregiver’s health. In particular, caregiving stress has been found to increase the caregiver’s susceptibility to infectious disease and depression. The caregiver is also more likely to suffer premature aging, a measurable decrease in life expectancy (some studies suggest between three and ten years), as well as risks associated with sleep deprivation.
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Who would have thought that being a dutiful loved one would take years off your own life or make you sick!

Because the risks associated with stress and the impact that caregiving has on the individual are now coming to light, I hope that more oncology practices will shift their treatment paradigm to encompass
more than just the physical aspects of cancer. Currently, many cancer centers and oncology groups maintain a wonderfully strong team of doctors, from radiologists to oncologists to surgeons. However, they neglect the psychological aspect the disease brings with it. Cancer specialists address nutrition and pain, yet they ignore how devastating it can be to live with cancer or face death as the disease spreads to other parts of the body. Moreover, medical science and technology have made significant strides in slowing or stopping cancer cells from multiplying. As a result, a patient often lives longer with the disease in remission. However, a person surviving longer with cancer or other illness presents a new set of challenges that need to be addressed. One of these is how to offer support to both patient and caregiver as they strive to not only live their lives, but maintain a quality of life. Counseling could help address some of the needs. Randy and I were proactive enough to find a therapist to help us, but others might not go that route and need to have the resource offered to them.

As Randy admitted in
The Last Lecture
, he was not a big fan of psychologists. But after working with Dr. Reiss, he understood the benefits: “Now, with my back against the wall, I see how hugely helpful [counseling] can be. I wish I could travel through oncology wards telling this to patients who are trying to tough it out on their own.” Randy held very strong opinions, and it took a lot to get him to change his position on a subject. So it is a testament both to how much he suffered emotionally and to Dr. Reiss’s exceptional abilities that Randy embraced therapy.

When we first stepped into Dr. Reiss’s office, both Randy and I were feeling disappointed in each other. One of the first things she did was to have us listen to each other. I mean
really
listen to what the other person was saying. We realized that even though we were
going through Randy’s cancer together, our individual experiences were unique and valid. For his part, Randy experienced daily pain after the surgical procedure to remove the tumor, as well as terrible side effects from the chemotherapy. On the other hand, I was trying to maintain a normal routine for our three children, provide the best care I could for Randy, and manage our household. Randy communicated to me that he wanted to do everything he could to maximize his chances of living. To achieve this goal, he had to make the treatment and any additional options his highest priority. He would push his body as hard as he could by taking the highest chemotherapy dosages allowed, and he wanted my support for him during that time, regardless of what he looked like or how bad he felt. For my part, I explained to Randy that I felt I had to be the one who dealt with the issues of the moment, whether it was his feeling terrible and needing extra attention or filing our taxes or investigating kindergarten options for Dylan, who would start school in the upcoming fall. Our roles and points of view reminded me a lot of Virginia Woolf’s
To the Lighthouse
. Mr. Ramsey can’t see the red-hot poker flowers his wife admires growing around the house, but he can look up into the constellations and appreciate the stars, which she in turn cannot see. A similar dichotomy existed for Randy and me. Here we were a team, a united front, fighting pancreatic cancer to save his life. And yet we were coming from two different places that made it difficult to understand the other’s commitment and contributions to the team effort. Listening to each other and respecting the different ways we were going through this experience helped bring us closer together. Our marriage stayed strong as we continued to walk this difficult path together.

Another issue Randy and I shared was stress-induced paralysis. We simply were unable to make a decision. This was most apparent
in our need to choose a school for Dylan. Pittsburgh is a wonderful city that offers a full spectrum of educational options, both public and private. In the public sector, there are neighborhood schools, magnet schools, charter schools, and even an elementary school using the Montessori approach. On the other side of the coin are the independent schools offering traditional and nontraditional educations. Before Randy became ill, I had done a modicum of research into which setting would be best for Dylan. But since Randy’s diagnosis, I had not been able to devote any time or energy into making a decision. Now in the spring of 2007, our window to enroll him was closing. We had to make a choice soon. After I had narrowed down the selection to just a few schools, Randy and I evaluated the options together, but we couldn’t decide. So we visited the schools. Randy would unleash his sharp mind on the unsuspecting principal, who would be grilled for a good half hour. Randy would ask how the school would handle various scenarios, including what offense would have to be committed for a student to be kicked out of the school by the end of a school day, as well as questions about how the school allocated its funds. Even after gathering all this information, we still couldn’t decide. Each question was preceded with the hypothetical, “If Randy should die of cancer …” Should we go with the private school located three houses away so I could easily walk Dylan to school with two little ones in tow? The magnet school might offer Dylan more educational enrichment opportunities, but it would be a longer bus commute. As the deadline loomed, our anxiety rose. During one of our sessions with Dr. Reiss, we explained our dilemma and asked her advice. Dr. Reiss showed us that we were allowing the stress and fear of living with cancer to prevent us from living our lives. Just as I would lie in bed at night working through every possible problem that might arise and how I would
deal with it, Randy and I were doing the same thing with school choice. We were envisioning every possible scenario that we could think of, exhausting ourselves in the process, not realizing we could never conceive of every possibility.

Education wasn’t the only decision we couldn’t make. There were also little things, like whether or not to buy a rug for the front entryway. I would spin around and around asking myself if I should spend the money on a rug for a house we might have to leave if the cancer returned and Randy died. Randy, for his part, would complain of living with the Sword of Damocles hanging over his head. He felt that at any time the worst could happen. He wanted the two of us to decide in advance what we would do if the cancer returned. He talked about it with friends and family. He wanted to do everything he could to leave us in the best situation possible. So we talked about where the family should live—Pittsburgh or closer to my family? If we decided on my family, should that be closer to my older brother in Virginia or my younger brother in North Carolina? I wanted to remain in Pittsburgh, where I had a strong support network, good friends whom I cherish, and a real love for the city.

After listening to us, Dr. Reiss helped us learn another important lesson: cancer made us feel as if we had less control over our lives, and as a result, we were trying to exercise some dominion over the course of events. But we had to accept some loss of control and the inability to predict all outcomes or scenarios that would arise. Instead of spinning our wheels and agonizing over the what-ifs, we had to make the best decision we could at this moment with the information we had. Later on, we could reevaluate the decision we had made and make changes as new information or circumstances presented themselves.

Armed with this insight, Randy and I were able to go back and
make the decisions we hadn’t been able to before. We chose a school for Dylan. We decided not to decorate the newly renovated space. We even agreed on a strategy for where the family would live if Randy died. Then we filed the master plan away with the acknowledgment that we wouldn’t discuss it further until absolutely necessary.

Having a counselor to talk to about the problems we encountered and the difficulties we had coping with them was a benefit to us beyond measure. It not only improved our daily lives in terms of making decisions, both big and small, but Randy and I were able to talk to each other and appreciate the other’s point of view. Our relationship strengthened and our love flourished during a time of extraordinary duress. And it was a good thing, too, because we needed the foundation of our marriage to be rock solid so we could face even more demons on our cancer journey.

I
T WAS A MAGICAL, GLORIOUS
summer after so much stress and work during the winter and spring of 2007. Randy was off chemotherapy for the first time in six months, and he had regained his weight and his vitality. We were living in the moment without fear of what might happen tomorrow. Randy was so confident he was going to live that he got a new car to replace his worn-out thirteen-year-old Volkswagen Cabriolet—the same one he had poured Coke into while his niece and nephew watched with a mixture of disbelief, humor, and horror. We took trips to Kennywood, a Pittsburgh amusement park, and rode the rides with our children. Randy won a giant stuffed animal for the children, passing on his love for carnival games and the thrill of walking through the park with a humongous, orange clownfish for everyone to see. We frequented the local water park, where Randy was courageous enough to do the high body slide and some tubing with Dylan. We vacationed for a week at the beach in the southern part of Virginia,
close to where my family lives, allowing us to visit my brother Bob and his family again. Randy even felt strong enough for me to take a nine-day trip to Spain with his mother, his sister, and her husband. I was reluctant to go, but he insisted, saying he would have plenty of help. He also felt that I needed a vacation. He really wanted me to take this trip, I think, in part to allow him to do something for me. I accepted and had a wonderful time and a much-needed break. Life in the Pausch house was almost like old times.