Dream New Dreams

by Jai Pausch

  Part of improving Randy’s odds for survival involved finding a surgeon who was experienced in performing the difficult procedure. The surgeon needed to be affiliated with a hospital with a recovery center well versed in helping the patient recover and dealing with the various complications that typically arise after the surgery. All these factors were important to consider because the mortality rate from the surgery alone can be as high as 20 percent or as low as 5 percent. Reducing Randy’s risk in as many ways as possible was at the forefront of our minds. We were fortunate in having an excellent surgeon, Dr. Herbert Zeh, and Shadyside hospital was well equipped to help Randy recuperate right in Pittsburgh. With the next step in battle against the cancer decided, we then turned our attention to me to address the real possibility of physical and emotional exhaustion.

  In his second e-mail, also sent on September 12, 2006, Randy elaborated on the dangers of overloading me as the family’s primary caregiver:

  Our biggest concern is making sure that Jai has help. For two months starting Sept 19th, she will not only be doing the job of a single parent with a 4-year-old (Dylan), 23-month-old (Logan), and nursing four-month-old (Chloe), she will be doing so while either visiting me in the hospital or while I’m recovering at home.

  Jai is one of the strongest women I’ve ever met, but she’s human, and the task before her is Herculean. We must avoid Jai “burn-out” at all costs.

  Our basic plan is to use local help Monday–Friday (we think we have a good plan in place), and to accept all of your offers of help to come visit for weekends. It would be most helpful if people could come here, arriving by Friday afternoon/evening, and leaving Monday. We will have plenty of room to put up visitors.

  Jai will be talking with you in the next 48 hours to set up a calendar to make sure we have full coverage; my family will be doing what they can, as well.

  God bless you all for your willingness to help in what is truly our time of need.

  In addition to educating ourselves about pancreatic cancer and treatment options, I think one of the smartest things we did was to acknowledge the impact cancer would have on our family. So often people focus only on the patient, but cancer takes its toll on more than that one person. As Randy so gallantly said at one point, I was one tough broad, but I am only human. We knew that the stress, combined with the situation’s demands, created a strong probability of wearing me down. So we planned on a support system for me so I could best take care of my husband and our children, in hopes also of keeping our marriage intact. Unfortunately, many oncologists and cancer centers do not offer support for the patient’s caregiver. And caregivers can quickly find themselves overwhelmed without the resources to help. I had never been in this position before, not for a family member or friend. Taking my lack of experience into consideration, we made sure to get ahead of the problem and ask family and friends to come help us with patient care, child care, meals, and domestic responsibilities, such as laundry.

  With our family informed and a game plan in place, we now focused on how and what to tell our children. At four months old, obviously Chloe was too young to understand anything that was going on. Trying to explain cancer to a two-year-old was not going to be an in-depth conversation, so we kept it short and sweet; Logan could understand very simply that Randy had a boo-boo and needed to see the doctor. That was all he could process and all he needed. Dylan was a different story. Though only four and a half years old, Dylan was not only perceptive, but he was able to understand complex topics. Here was a child who would devour information about dinosaurs, from how they lived, how large they were and what they ate, to how they died and what animals evolved from them. He would sit and listen quietly to the informational videos at the natural history museum while scientists in the film discussed the connection between birds and dinosaurs or the theories about the demise of the dinosaurs at the end of the Cretaceous Period. Given his precocious intelligence, it wouldn’t be enough to tell Dylan that Daddy had a boo-boo. When we were ready, we took Dylan to a quiet room where we wouldn’t be interrupted by his siblings, and we told him his father had a disease called cancer. We explained that he couldn’t catch cancer like a cold. Randy explained that cancer was like a weed that grows in the garden. The weed grows and multiplies in the garden choking off the other plants and keeping them from getting the nutrients of the soil. Even though we pull the weeds out of the garden, they sometimes grow back after a period of time. Like the weeds, cancer was growing in Daddy’s body and the doctor had to pull it out so it didn’t continue to make Daddy feel sick. Dylan quickly asked Randy if he was going to die and Randy assured him he would not. After lots of hugs for reassurance, followed by a few more questions, Dylan hopped down off the bed and went to play with his brother. Randy and I sat there emotionally drained from the experience, leaning on each other for support until we could stand up once again and face the next set of challenges.

  Randy’s willingness to discuss his disease and treatments in a realistic yet hopeful manner throughout his battle with cancer was a huge upside for me and our family. As an engineer, Randy tended to focus on numbers and percentages, but he was also able to engage on an emotional level and discuss his feelings most of the time. Not everyone affected by cancer is as open as Randy. Some people don’t want to know anything about the disease’s progress or to weigh the options of the various treatments. A patient’s denial can put a relative and/or caregiver in a terrible position, knowing what is going on but not being able to talk about the situation, about the feelings and fears a terminal illness conjures up, or about how to deal with impending death. In one case, my friend’s husband chose to remain ignorant of the cancer’s progress. The doctors respected his wish not to know about the disease and, as a result, met clandestinely with his wife, warning her how much longer her husband had to live. Then she suffered alone. Imagine her dilemma: she hears terrible news from the doctor in the hallway outside the examining room but has to go back to her loved one and put on a front of ignorant bliss. I feel so fortunate that Randy wanted to know and to have a hand in making decisions about his medical treatment, his hospice care, and even his funeral. Because he was so open with me I was able to understand the reasoning behind his choices and voice my agreement or trepidation. We didn’t hide anything from each other. Maybe we didn’t always like hearing what the other person said, but we always knew we were a team. We would support each other and that comforted us in a time of so much uncertainty and pain.

  Randy’s greatest strengths were his analytical skills and his ability to focus on solving a problem. However, sometimes too much of a good thing can turn into a negative. For Randy, the news that he had cancer threw him into engineering mode: assess situation, learn options, analyze data, and make informed decision with highest probability to solve problem. Intellectually Randy knew he had a very strong chance of dying and he did not shy away from the ugly statistics. His concern for my well-being and our family’s future greatly weighed on his mind. If he couldn’t beat the cancer, he would position his family as best he could for a future without him. Having identified the objective, Randy went to work analyzing the situation, putting full power to his brain and setting aside his feelings. The upside to his strategy was, he didn’t become morose or hysterical. The downside was, his pragmatism could appear cold and uncaring. Sometimes he could say things to me that cut deeply into my heart, as when he questioned my decision-making abilities because I was a humanities major in college and not a trained scientist. As his health became more compromised, Randy relied heavily on his intellect and the army of knowledgeable people who helped us. He trusted his trained mind and felt the way he approached a problem was the best way to tackle it. Sometimes that caused friction between us.

  Randy gave way to a certain imperiousness when I took over the checkbook and bill paying. The family finances had always been his responsibility. With his surgery date fast approaching, he felt it imperative that I learn all about our checking, savings, retirement accoun
ts, taxes, online access passwords, and household budget formulas. Randy kept all our checking account information in an Excel spreadsheet, which he had designed himself, discarding the bank’s paper check registry. He was very knowledgeable with Excel; I was not. His checking document was extremely complex, far beyond my abilities, but Randy insisted that I master his way of balancing the checkbook. His overbearing demeanor was out of character, but I think the fear he felt brought out the taskmaster in him. Was it really necessary that I learn Randy’s Excel spreadsheet? No. I would have to develop my own system for managing our finances in a way that worked for me. But my learning his system gave Randy great peace of mind, relieving some of the tension he felt. Stress and uncertainty can bring about extreme behaviors and attitudes in a person and make things difficult for his or her loved ones. At the time, Randy and I were unskilled in recognizing when fear was driving our actions and how to cope with the stress.

  Randy’s anxieties over getting his affairs in order before the surgery were fueled by the possibility of dying either during or recovering from the procedure. Even though he had a greater chance of living than dying and even though we had found an excellent, experienced surgeon and recovery center, Randy wanted to do as much as possible for his family to ease our burden just in case the worst possible scenario came to pass. One of Randy’s favorite sayings was, “Plan for the worst; hope for the best.” One aspect that greatly concerned him was single parenthood for me: raising three small children in a city without any family nearby. I believe he felt very guilty about my difficult situation, even though it wasn’t his fault. Moreover, he believed that children needed two parents to raise them, that they would be better cared for because there would be two sets of hands—and more patience.

  Early in September 2006, Randy approached me about a possible solution to relieve some pressure from me and improve our children’s quality of life. I remember him coming into the room, head down, avoiding my eyes—very unlike Randy. He prefaced the conversation by saying he knew I would say no, but he wanted me to hear him out. And then he asked me to think about giving up our daughter, our four-month-old baby, for adoption, as a way to ease my burden and give the children a better chance of having a better childhood with more attention and more love. His words struck me like a punch in the gut. It sickened me to even think of losing Chloe and I vehemently said no. He instantly acquiesced, never challenging my choice, and never brought it up again.

  Now if you had ever told me before this moment that Randy would one day suggest giving up one of his children, I would have told you you were crazy!—that Randy would never do that. But Randy was focused on solving a problem, shelving his emotions so as not to color his vision. I think Randy could see how his death would leave his children at a disadvantage and I believe he was trying to find a way to deal them a better hand than the one they held. Maybe he could see the inevitable struggles I would have in functioning as a single parent; even before the cancer he and I both were already finding it difficult to care for three young children. His “solution” had nothing to do with how he felt about his daughter, for I know deep in my heart that Randy loved Chloe and under normal circumstances would never have contemplated giving her or any of our children up for adoption. He had wanted to have a third child after Logan was born, and he was delighted we had a healthy baby girl. He loved his daughter and his sons equally, loved being a father to them. But cancer introduced a level of stress so severe that Randy and I both struggled to cope. For his part, his singular drive to make us safe pushed him to extreme behavior and judgment. I knew he didn’t want to lose Chloe any more than he wanted to die. Cancer and its power to kill him were the catalysts for his extreme request.

  Learning how to manage the overwhelming feelings and stress one experiences while dealing with cancer takes awareness and coping skills, neither of which we developed until further along our cancer odyssey. The relationship between husband and wife, parent and child, becomes strained, pushed sometimes to the breaking point. As the caregiver, I felt like I was asked to make concessions and sacrifices for my husband and my children. It was a delicate balance to not lose all of myself in the swirl of fear and waves of strong emotions.

  At the beginning of our journey, in addition to my usual role as mother and wife, I was adding another: emotional backstop and sounding board for a sick and potentially dying man. I had no idea what brick walls lay before me, but I knew I’d face any challenge to help my husband and care for my children. It was the least I could do for Randy, who had given me so much happiness and helped me become a better person. I admired and respected him, and I would not shy away from the new demands set before me to help him, regardless of the cost. How little did I know at that time how high the cost would be—or how great the rewards.

  Shuttling Between My Husband and My Children

  I’M SURE WE LOOKED LIKE a romantic couple to the neighbors as we walked along the sidewalk of our Pittsburgh neighborhood holding hands in the fall of 2006, leaning on each other, speaking softly. Instead of saying sweet nothings, we were strategizing how to maximize Randy’s chances to beat pancreatic cancer and live to see his children grow up. For the couple of weeks following the discovery of the tumor, the September weather was nice and mild. Pittsburgh is such a beautiful place to be in the fall as the summer heat abates and the cool evenings set in. The turning leaves put on a spectacular show not just in the mountains, but in the city neighborhoods as well. During these solitary walks together, we didn’t notice the trees or enjoy the change of seasons, but rather discussed various cancer regimens, where the providers were located, and the implications for our family in choosing treatment at a center far from home. I wish we had known about the Pancreatic Cancer Action Network, which through its Patients and Liaison Service provides support to newly diagnosed patients by connecting them with a trained associate who has information about oncologists and surgeons in the patient’s area, up-to-date treatment options for pancreatic cancer, and even clinical trials conducted around the country. We would have saved so much time and energy by tapping into that wealth of information. Instead, Randy and his Carnegie Mellon colleague and friend, Jessica Hodgins, scoured the Internet for information on what options existed. They compared survival rates, the number of study participants, and blogs where patients and caregivers post about their experiences with doctors and drugs. Between the two of them, no stone was left unturned.

  Randy began his treatment plan with the Whipple procedure, which was his Golden Ticket. Just by making it into the category of people eligible for surgery, Randy increased his odds of survival. In Randy’s mind, that slim chance could then be converted into a touchdown for the team. The morning of September 19, 2006, I quietly nursed the baby at around four a.m. After I returned her to her crib, I dressed and left with Randy for the hospital, located just a few blocks away from our house. My mother and, later on, Amy stayed with the children. We arrived around five thirty a.m. I remember the hospital lights glaringly bright in contrast to the darkness of early dawn. We were taken upstairs where Randy was prepped for surgery. His clothes and other belongings were handed to me in a white plastic bag. I stayed by his bedside surrounded by a privacy curtain, holding his hand and whispering words of love and encouragement. We kissed briefly after the anesthesiologist came in to wheel him away with a quick promise to take good care of Randy. I allowed myself only a few minutes to cry alone before heading downstairs to the waiting area. Our family and friends would be coming soon, and I’d need to be there to keep them informed.

  Randy’s surgery lasted eight hours—a good sign that the cancer hadn’t spread. The surgeon had told me beforehand that if, after opening Randy up, they saw that the cancer had spread beyond the pancreas, they would close him up and send him home to get his affairs in order. Happily, that was not the case. After removing the tumor, part of the pancreas, part of the stomach, some of the small intestines, a section of the small intestine called the duodenum, the gallbladder, part of the mi
ddle of the small intestine called the jejunum, the bile duct, and the lymph nodes near the pancreas, the surgeon sewed Randy up and sent him off to the intensive care unit to begin his difficult recovery.

  As soon as Randy was home after a two-week recovery in the hospital, we moved to the second line of attack. Like other cancers, pancreatic cancer is usually treated with chemotherapy and/or radiation. Our local cancer center offered the standard of care, which meant treating Randy with a chemotherapy drug called gemcitabine. Unfortunately, this treatment meant a low probability of being alive in twelve months! Randy knew there were experimental treatments offered at cancer centers far from our home, but he was leaning toward staying in Pittsburgh for our family’s convenience. Then one of his good friends took him aside and counseled him to reconsider his line of thinking; he explained that Randy was doing himself a disservice by not going to where the best treatment was. When you are trying to beat a tough opponent like a cancer that gives no second chances, your best strategy is to go to a facility with the treatment that offers the greatest chances of survival. You don’t have the luxury of choosing where that treatment is located; rather, you focus on the results of the latest medical research. Pancreatic cancer is highly aggressive and resists most of the chemotherapy drugs that are approved for use by the FDA. Many people travel halfway across the country to seek attention from a highly regarded oncologist or participate in a clinical trial that holds more hope of survival by using a cutting-edge therapy. To do this, most people have to confront major logistical problems, including cost, lodging, and health insurance coverage. Our family was no different in this regard, except that we had an extra constraint: our young children.