Dream New Dreams

by Jai Pausch

  For his medical care, Randy was debating between the standard regimen offered at the University of Pittsburgh and an experimental program offered in Seattle, Washington, and Houston, Texas. The clinical trial differed from the standard treatment by using three chemotherapy drugs that had shown promise in killing pancreatic cancer cells, along with daily radiation sessions to kill the cells as they tried to divide and replicate. Early results showed a 40 percent survival rate for the first year in a study group of one hundred people. When Randy compared the clinical trial’s 40 percent one-year survival rate to the standard of care’s 20 percent one-year survival rate, he immediately picked the clinical trial. There was a downside, though: horrendous side effects, such as reduced white blood cell count, extreme weight loss, diarrhea, fatigue, nausea, and even death. One of his Pittsburgh oncologists warned him not to subject himself to such a brutal regimen, but I remember Randy saying he wanted the oncologists to throw the kitchen sink at him. Then, if the cancer came back, he would have no regrets because he would have tried his hardest. The Houston-based program accepted Randy as a candidate for its clinical trial, allowing him to be a little closer to the East Coast, just a short flight away from Pittsburgh. However, the trade-off for greater survival rates also increased the level of complication for our family.

  In my naïveté, I still hadn’t wrapped my head around what this location choice meant to us as a family or to me as a mother and wife. I didn’t have the knowledge or experience to understand how debilitating chemotherapy and radiation is to the body, how sick it makes the patient, or how weak that person becomes after being on a cancer regimen for a period of time. The oncologists understood what would happen to Randy’s body during two months of treatment and strongly recommended that he bring a full-time caregiver to help manage the side effects from the treatment’s high toxicity. I was shocked when Randy asked me to be his caregiver. I remember thinking, How can I be in Houston taking care of Randy and in Pittsburgh taking care of our children? I talked to Randy about having friends and family be with him during the week and I would fly down on the weekends. But he was adamant; he wanted only me to be his primary caregiver. At that moment, I felt he was being selfish and unfair to me. Thinking about it now, I can only surmise that Randy trusted me to see him get weaker and loved me enough to let his guard down. I think this is the nature of a strong marriage: one can be completely vulnerable with one’s spouse, knowing that person is going to act with one’s best intentions in mind. Knowing the punishment he was soon to undergo, my husband knew he could be sick, have terrible diarrhea, nausea, weight loss, lack of patience, and other reactions, and I would still love him. I guess I was a safe haven for him. He had seen me care for the children. He knew I would help him at all costs. The price of leaving my children, though, was high, maybe too high.

  Rather than reject his request immediately, I struggled to find an acceptable alternative. The simple answer to me was to move the whole family to Houston, where we could be together and I could care for both Randy and the children, with additional help, of course. My solution turned out to be a total impossibility. Randy was an excellent time manager and could see how the idea would never work. He tried to dissuade me, but I needed to investigate the possibility and find the answer myself. I couldn’t accept splitting up our family so quickly.

  In October 2006, we visited the Houston cancer center, with five-month-old Chloe in tow, for preliminary tests. At that point, I realized that cancer centers are not family-friendly settings. In fact, there were some hospital floors and departments that Randy would need to go to where children were not allowed. Another problem would have been integrating the children’s schedule with medical appointments. Most of us have experienced a long wait in a doctor’s office. Cancer centers are no different. We found that Randy’s appointment times were more like suggestions. We often waited long past the designated hour to receive a treatment or see the oncologist. Many services, such as cleaning intravenous lines used to administer chemotherapy, were on a first-come–first-served basis. I wondered to myself how I would arrange a predictable schedule to care for both Randy and the children. A nursing infant requires regular feedings, but I couldn’t guarantee I would be there for Chloe when she was hungry or if she got hungry before her scheduled feeding. It would be a logistical nightmare. If I pursued this idea of bringing the children with us, I would be setting up a difficult situation from which we would all suffer.

  After our initial trip in October 2006, I understood that Dylan, Logan, and Chloe couldn’t be with us for those two difficult months, November and December 2006. My heart broke at the thought of being separated from my little ones, especially the baby. I cried and cried as I agonized over the decision to accompany Randy or abandon him for our children. How does one make this choice? My decision would have enormous repercussions for everyone in our family and especially on my marriage. As with any difficult decision, it’s best to take time, think things through, and stay rational. I know my emotions tend to take over. So given my disposition, I took the time to think through the various aspects, to give voice to my feelings and concerns, and to share these thoughts with close friends. I asked questions of people who had been through the cancer caregiving experience. Several of our church friends had taken care of loved ones or had witnessed family members going through cancer treatments and offered me insights from their experiences and observations. They would approach me after the service or call me at home to talk with me. Our nanny, Amy, shared with me how her uncle and father-in-law benefited greatly by having their spouses with them during their battles with cancer.

  In addition to talking with friends, I tried to frame the question of what to do in a helpful way. I asked myself: In five years, would my children remember or be scarred by my absence for two months? Would switching Chloe to formula hurt her? My answer was no to both these questions. Then I thought about Randy: Would my presence benefit him during the cancer treatment? Would I make a difference and potentially help him beat the cancer? I believed I could make a big difference in helping him at this time. Having thought through the pros and cons carefully and having given myself the time to articulate them gave me complete peace of mind as I went to my husband and our family. I told them our plan was for me to go with Randy to Houston. I found I would repeat this decision-making process over and over throughout his illness, and I still find it useful today. I try not to act impulsively, but rather take a step back and look at both the emotional and intellectual reactions I have, seek out additional information, and then make the best decision I can. In that way, I am less likely to feel regret over the path I choose.

  Family and friends stepped up to help us by offering to care for the children while we were in Houston. Ultimately my older brother, Bob, and his wife, Jane, carved out space in their three-bedroom house. My thirteen-year-old nephew, Jacob, gave up his bedroom and slept on an air mattress in a room over the garage. Dylan took Jacob’s bed, and Chloe slept in a borrowed crib, which took up most of the floor space. Eleven-year-old Hannah shared her room with Logan, who slept in another borrowed crib in the middle of the room. Even though I knew my little ones would be loved and well cared for, it was still painful to prepare them for this separation. Maybe when they were older the children wouldn’t remember the time I was away from them, but in the moment, we were all feeling sad and heartbroken. I tried to explain to Dylan and Logan that I had to take care of their daddy, who was at a hospital far away, and I would be back every weekend to be with them. I tried to assure them I would always come back. Chloe was almost six months old when I nursed her for the last time, sitting in Bob and Jane’s kitchen on Sunday, November 5, 2006. I handed my sister-in-law my baby, kissed the boys, and with promises I would return soon, I turned and walked out the door for the airport. I didn’t cry in front of them, but waited until I was out of their sight to give free rein to the tears I had been holding back. My gut ached all the way to Houston until I was back with Randy and consumed once more
by his needs.

  This scene would play out seven more times, and in spite of my growing experience, each occasion felt more arduous than the last. Each time I tried to block out their cries of “Mommy, don’t go!” as I walked out the door but couldn’t help melting into tears. My body was still making breast milk, so I’d have to pump to avoid becoming engorged and uncomfortable. Afterward I’d pour the milk down the drain mixed with tears of longing for my baby girl.

  This shuttling between Randy and our children had to be one of the most difficult and stressful times of my entire life. I would spend the week in Houston caring for Randy as he grew weaker and as the pain and discomfort intensified. His treatments were administered in the hospital, then he would be released to recuperate in the hotel alone with me. I was frantic to help him but didn’t really know how. I was sad and anxious much of the time. My life turned upside down. I was living in a hotel room and spending every waking hour fighting cancer Monday through Friday. I was woefully underprepared for my role as a cancer caregiver and for the medical and nursing responsibilities I was asked and expected to perform. No cancer center or oncology ward handed me a copy of a “What to Expect When You’re a Caregiver” handbook—it doesn’t exist. One learns as quickly as one can, in the moment. There isn’t time to process the event, to allow one’s feelings to settle, to wrap the mind around all that is happening. I didn’t have a social worker or nurse to explain to me not only what Randy would be going through and the misery he would suffer mentally and physically, but also the shock I would experience at seeing my beloved suffer so greatly. Without this guidance, I walked blindly along, feeling my way and doing the best I could. Cancer centers and oncologists rely on caregivers, i.e., nonmedical help like me, to watch over the patient after leaving the oncologist’s office. After a chemo session, a patient isn’t held for observation but is released to go home. Some people don’t have a lot of difficulties with their treatment. Others do, especially with a highly toxic drug taken over a long period of time. Chemo accumulates in the body, and its effects get stronger with each session. It seems kind of ironic that a person can be given these kinds of drugs and then immediately be released to go home, whereas when I got the flu shot this fall, I had to remain in the drugstore for thirty minutes to make sure I didn’t have a reaction.

  Once the patient leaves the oncologist’s office, the burden is on the caregiver to observe and help with side effects from chemotherapy or radiation or disease progression. Some of the warning signs I was told to look for were:

  fever

  water retention

  not urinating

  decrease or increase in appetite

  decrease or increase in weight

  fatigue

  pain

  redness or inflammation around the port or peripherally inserted central catheter (PICC) line to administer chemotherapy or fluids

  diarrhea

  high or low blood pressure

  To miss some of these changes in Randy’s health could allow for serious problems to crop up or jeopardize his life. If Randy started to retain water, for example, I could tell by pressing on his shins. If my fingers left red marks, that meant fluid was building up. Water retention, or edema, would be a sign his kidneys were not working well due to the chemotherapy drugs, which can lead to kidney failure. That’s bad! I felt a lot of pressure to watch over my husband. He wasn’t just a patient to me, and I couldn’t treat his suffering at arm’s length. When he was in pain, it pained me. When he was uncomfortable, I felt discomfort. I once heard a palliative doctor say that one of the most difficult things the family goes through is watching their loved one live with pain and discomfort caused by cancer and its treatments. I heartily agree.

  Caregiving really pushed me to grow in ways I never expected I could. I didn’t believe I had it in me to take on the nursing responsibilities for Randy. One particularly difficult task I was asked to do was to clean and flush Randy’s PICC line. This responsibility began in Houston and went on until Randy finished the chemotherapy regimen six months later. A PICC line is a thin plastic tube that’s inserted into a vein, in the forearm in Randy’s case, and is pushed up and up until it gets to a larger vein closer to the heart. The catheter is connected to the forearm skin by a little plastic wing held in place by three ugly, fragile, black sutures. The catheter allows a nurse to inject a chemo drug without constantly sticking a needle into a vein over and over again.

  Veins become a big deal when a person undergoes chemo treatment for a long period of time. Cancer patients are often getting their veins punctured for blood tests or used as a conduit for fluids, like chemo drugs. After a while, those veins get overused and are prone to collapse or scarring, which means they are no longer usable for injections. Nurses search for a good vein, looking at arms, hands and even feet, much to the discomfort of the patient. Chemotherapy causes the veins to shrink, making it difficult for a nurse to find a vein and painful for the patient who gets poked over and over. Randy and I wanted to avoid this particular experience, so the PICC line was the best option.

  There was a lot riding on keeping the PICC line free of infections or clogs. Randy needed the line to stay in excellent working order so he could do continuous chemotherapy to complete the protocol that he believed gave him the best chance to beat the cancer. There’s nothing like a little pressure for proper motivation. In November 2006, my training began by watching a teaching video of the cleaning and flushing procedure of a PICC line on a real human arm. I think the video lasted about fifteen minutes, maybe a little bit more. During that infernally long time, I squirmed a hole into the bottom of my chair. I remember feeling nauseated, breaking out in a cold sweat, and averting my eyes from the video. I was horrified that I was going to have to take off the sterile bandaging from Randy’s hairy forearms, pulling the hair and skin. Then I’d have to rub alcohol all around the area, including under the plastic wings and around the sutures. Ugh! My mind and stomach rebelled against the idea of touching a Q-tip to those stitches!

  Randy was upset and frustrated with my reaction. He worried that he would have to make extra trips to the hospital to have a nurse clean his PICC line, costing him valuable energy and time, plus another medical visit on top of the countless other oncology, radiation, chemo, and scans he was scheduled regularly to do. I, in turn, became frustrated with his lack of patience or empathy for me and my feelings. Didn’t it matter that I was pushing myself to tackle something that caused me so much discomfort? Couldn’t I have a moment to be human and weak? I didn’t go to nursing or medical school. I didn’t even stay a candy striper for more than a year because the sights and smells in the hospital made me feel sick to my stomach. Didn’t it say something about my dedication and love for him that I was willing to focus on the task at hand and ignore the smell and sight of the threads pulled through and knotted in human skin? Randy’s disappointment and his impatience with my imperfections as a caregiver cut me deeply and caused a lot of strife in our relationship. The resentment we felt at this time started to build. We didn’t talk to each other about what we were feeling, letting those negative feelings fester inside.

  Even under watchful, caring eyes, Randy was becoming haggard, edgy, and exhausted. I’d never seen someone I loved so sick, and it took a toll on me to watch him get sicker as each day, each week passed. Taking a shower was now a major event for which Randy would have to muster his energy. The distance from the hotel room to the hospital across the street became a demanding walk. At the beginning, it would take us five minutes to reach most hospital locations, but as the weeks passed, it would take fifteen to thirty minutes. Randy refused to use a wheelchair, and we would walk slowly, stopping often for him to rest. He would put his hands on his hips, bend over slightly, and grimace in an expression of pain that would send chills up my spine. I could only encourage him and offer him my support, which I felt was not enough for him in his condition. I felt helpless, frustrated, and scared as his health declined more and more. Even thou
gh he felt miserable, as though he had the flu during those two months, Randy didn’t complain or feel sorry for himself. Yes, he could be irritable, but he really tried not to lash out at those around him. When Randy’s best friend since eighth grade, Jack Sheriff, came to take care of him on a couple of weekends, he noted that Randy seemed to disconnect from the emotional and focus on the scientific aspects of the situation. To divert himself, he would work on his computer, communicating with his research team and his colleagues. We would watch NFL football, and he would school me in the rules of the game if he had the energy. Early in the treatment, Jack took him to a sports bar and noticed that Randy seemed relieved to be among “normal” people who were out living their lives. He was removed from the cancer world and could forget about what his new normal was, even if it was for just a couple of hours. Most of the time, though, he slept or sat quietly.

  After a Whipple procedure, it’s normal for people to go through a difficult period of getting their digestive tract to work properly again. Randy was no different. His body was not happy with its new arrangement and complained bitterly by refusing to digest food and instead sending it on its way to his colon. Randy and I struggled to find foods and portion sizes that he could manage. Sugary, fatty, or spicy foods were intolerable. Later, when undergoing the clinical trial program of chemotherapy and radiation, Randy experienced a further reduction in diet because his system was so stressed. Radiation burns off the cilia inside the intestines, creating a unique condition called slick gut, so named because food slides through without any nutrition being extracted. Chemotherapy drugs’ side effects often include nausea and diarrhea, which further reduce a person’s caloric intake.

  Getting calories into Randy became a major priority for us. For breakfast, he could usually eat a scrambled egg, but it had to be hot out of the pan. Randy would sometimes get up for breakfast around ten or eleven, or earlier to make a doctor’s appointment. When we were living in the hotel room in Houston, I bought a hot plate and some cheap pans to cook for Randy. But a hot plate can’t cook things very quickly. So when Randy would say, “I think I could eat a plate of plain spaghetti,” I would jump up and start cooking. Unfortunately, by the time I would have his food ready, the craving would have passed; he would take one bite and sadly shake his head. A little while later, he would say, “I think I could eat some tomato soup.” I’d quickly make him soup and served him in bed, only to have him eat a spoonful or two and then refuse the rest of it. At other times, I’d go downstairs to the hotel cantina to get the soda or juice he was craving. Or I’d walk over to the cancer center’s cafeteria for something for which he expressed a desire to eat and that I couldn’t make in the room. Sometimes he would still want to eat it by the time I got back, sometimes not. This scenario would repeat itself many times over the course of Randy’s battle, whether in the hospital or at home.