Dream New Dreams (5 page)

He was also clear on the delicate topic of finances. We didn’t talk about money with our families, but this situation warranted broaching the subject. By nature, Randy was a frugal person. Even as a graduate student living on a meager stipend he had managed to save money. By the time we had met, he had built up a nice nest egg. As we combined our lives and our incomes, we made sure to add to our savings and retirement accounts, never living outside of our means. Now our prudence would pay off big time. Knowing his family was provided for in the worst-case scenario took a huge weight off Randy’s shoulders, allowing him to focus on his health and treatment. I think it also was a source of pride as the result of his hard work and planning. I, too, was also able to breathe a huge sigh of relief, because the salary I made before I stopped working would never cover the bills and pay for day care and after-school care. Although we were humble in asking our families to help us through Randy’s surgical recovery and treatments, at least we didn’t have to walk up to their door hat in hand, asking for money.

There are many ways people respond to bad news, and especially to a life-threatening illness. Some give in to their emotions for a period of time. I know I reacted emotionally to hearing that Randy had an aggressive form of cancer that had an 80 percent chance of killing him the first year. Behind closed doors, away from family and friends, Randy and I would support each other as we vented our feelings and fears. We didn’t keep them bottled up, but rather found safe ways to express them. I found that talking to close friends about my feelings or some upsetting change in our predicament helped
me tremendously. We were never paralyzed by our emotions to the point that we couldn’t function or address the situation.

It is important to note that some cancers do not afford you the luxury of sitting idly by for days, weeks, or months. We quickly realized that we were now on cancer time, in which each minute of every hour counted as never before. Regardless of how slim the chance, we grabbed for the brass ring before the window of opportunity closed. By acting quickly, by doing our homework, and by educating ourselves about the most effective treatments, we were helping to shape our journey. If we had remained paralyzed with fear or chosen not to act, we could have lost traction in the fight against the cancer and lost precious time for Randy to live.

At this point, the cancer wasn’t exacting a terrible toll on Randy’s body. He had jaundice, and the buildup of bilirubin in his blood made him itchy all over. Since I had bitten my nails to the nubs, my mom scratched his back until there were red marks all over it. All the while, Randy sighed at having some relief from the itching. I think learning what had been causing his lethargy and other symptoms actually made him feel a little better. Randy was a doer. Just the fact that he could do something now—like research the disease and treatments—perked him up. Though his energy level wasn’t what it had been, he still functioned normally for the most part. He wasn’t eating as much and had stopped exercising all together. But he met with people throughout the day and worked on his computer on various projects. He made sure his PhD student was in a good place and that his life insurance had the correct wording on the beneficiary in case he died either during the surgery or due to complications afterward.

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:

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 accounts, 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.