Authors: Jai Pausch
The Thursday afternoon Randy was admitted to the hospital, I had to scramble to make child-care arrangements, for I hadn’t anticipated being gone past five p.m. Rachel, our nanny, was kind enough to stay late with the children until I could get home that night. I remained by Randy’s side while the nurses set up various lines for monitors and IVs. Diuretics began to flow into Randy’s body to begin the process of flushing the extra fluid out. When things seemed settled and Randy comfortable, I left the hospital to go home. Not long after the children were asleep in bed, my brother came over to stay in the house while I took Randy an overnight bag with his contact lens case and toiletries he needed. I didn’t stay long. Randy was tired and would have a busy next day, and I was feeling worn out from all the excitement.
I say excitement, but really it was fear that I felt. I was so scared Randy was going to die in the hospital even though the doctors had assured me he wasn’t in immediate danger. Congestive heart failure and renal failure sounded fatal, and seeing Randy connected to IVs and monitors only added to my sense that he was in trouble. I couldn’t judge how much danger he was in or if he was going to die soon from these complications. I had enough experience with the children’s illnesses to know when to be worried and when not to. When I got home, I was so exhausted I fell right to sleep. I didn’t have the energy to even cry.
The next morning, I had to answer the children’s questions about where Daddy was and when he was coming home. I told them Daddy had to go away on a business trip but would be home in a couple of days. Since Randy had traveled frequently for work,
they were accustomed to his being away and didn’t question me further. They had not noticed his discomfort because Randy stayed in his room most of the time. When one of the children did come into the room to see him, it was carefully choreographed so Randy had time to sit up and put on his positive, happy face. Daddy was sleeping in. He wasn’t feeling too well this morning. These answers were enough; the children didn’t ask any additional questions. After our nanny, Rachel, arrived and domestic tranquility was restored, I went to the hospital to be with Randy. I repeated this routine each day, spending mornings and evenings with the children and the bulk of the day with Randy at the hospital.
During the next several days, Randy’s stress test indicated that his heart was working way below normal capacity. Dr. Whelan called in an excellent cardiologist, Dr. Herre, to help get his heart and blood pressure under control. More tests were done. An X-ray showed that a liter of fluid had built up in Randy’s right lung, so a very long needle was inserted through his back and into his lung to drain it. Randy said this was really painful, but he felt a million times better afterward, being able to take deep breaths again and rest more easily. Randy stayed in the hospital from Thursday through Monday, until the doctors were able to get his system back on track. He had to get out by Monday, he said, so he could go to Washington, D.C., and advocate for greater awareness and funding for pancreatic cancer research in front of the United States Congress. This was just like Randy—his attention focused on something greater than himself.
Our counselor, Dr. Reiss, came in for the weekend, giving me a much-needed opportunity to discuss my fears and feelings. Dr. Reiss listened to me and reassured me that we were not at the end
of the journey for Randy but that this time at the hospital was a major intersection where his health had taken a downturn.
I depended on Randy’s medical team, which had grown to include the nephrologist, cardiologist, several oncologists, our counselor, and of course, the nurses who worked with the specialists. Even though I would vent my frustrations and concerns to my close friends and family, I looked to these health care professionals and their boundless experience to guide me through the turbulent waters, which became even more threatening as Randy’s health declined. His body now would no longer rebound to his previous level of good health but would instead deteriorate. I confess I didn’t really know when his health was taking a temporary dip or when it had moved to a new low. So I would turn to our medical team to help me understand and prepare myself psychologically to accept and deal with the consequences of his illness. Fortunately, my friends seemed always happy to listen to me, but they didn’t have the skills to help me deal with the new reality each day brought.
When Randy was discharged from the hospital, I stepped up my activities in caring for his medical needs. I had to watch for weight gain and test his legs by pressing my fingers on the skin to see if my touch left a mark, indicating fluid buildup, which would signal kidney issues. I had to take his blood pressure daily and report to the cardiologist if there were any negative changes. Randy was now on eighteen different medications, some on a regular schedule, some as needed, all of which I organized in a huge pillbox a family friend had provided. I had to keep on top of his prescription refills, drug side effects, and how he was feeling overall. I arranged his visits to various specialists and made sure he got to his appointments. I took notes and followed up on the doctors’ orders. Randy’s health
continued to spiral slowly downward. Each day and each week presented new issues, until it got to the point where I felt I needed more help to help Randy.
We needed more help at home, specifically medical help, someone who would come to the house and check in on Randy—someone who knew what they were doing! But he didn’t want a stranger helping him. He didn’t want someone he didn’t know or trust to take care of him. He wanted only me. Randy argued that I could do it all and that I needed more child-care help. I countered that we needed a home health care nurse. We compromised. I found additional babysitting help in the event we had another emergency medical situation or our nanny was sick. Randy asked our oncologist about a home health care nurse.
That’s when Wanda Wyatt entered our lives, taking the heavy burden of medical care off my shoulders, working with Randy to make his daily quality of life better, and holding both our hands as we walked that slow and scary path into the valley of the shadows. Wanda was not just a home health care nurse; she was also a hospice nurse. She started off doing simple things for Randy, like blood pressure checks, blood draws, checking for swelling and fluid retention, general performance evaluations, and dealing with medication side effects that left Randy depressed, constipated, or asleep. As Randy and I interacted with Wanda, our trust grew. From the beginning, Wanda told us she was a straight shooter and would give us her unvarnished opinion when we asked for it. Randy immediately liked Wanda; she was bright and caring. He liked that she didn’t try to foist major changes on him and that her tweaks to medications really helped him. As the disease progressed and Randy’s body grew weaker and weaker, we went to the oncology office less and less. In June 2008, when Randy stopped pursuing chemotherapy treatments
because he was too sick to handle any more drugs, Wanda was the only medical personnel we saw on a regular basis. She came by once a week, every week, to do his checkups and offer support and advice.
Wanda became my comrade in arms—the person who could see what was really happening behind the cheerful facade Randy often wore with acquaintances, doctors, and strangers. The daily grind of cancer, pain, and fatigue takes its toll on both patient and caregiver. Wanda was able to help both Randy and me deal with the rapid changes in his condition and the chronic elements of the disease, including pain, loss of energy, loss of concentration, irritability, depression, decreased appetite, and weight loss. She knew what I was going through, not only from her extensive experience, but also from working directly with Randy at home, where his guard was down. She understood the challenges of caring for Randy, and she helped me find solutions or at least coping strategies.
I hated watching Randy in pain. It tore my heart. The cancer ravaged his body until he seemed to be nothing more than skin on bones. It was agonizing to stand by and not be able to do anything to relieve his suffering. I tried what I could: I bought a recliner chair for him to rest in. I put together a medicine chart and organized his pillbox. I would rub his shoulders, feet, or back to help ease his pain. I would sit with him and talk with him when he felt like it or sit quietly with him while he slept. It was one thing to deal with his physical deterioration, but it was another altogether to deal with the psychological and cognitive impairments.
One of the most trying issues I faced at this point was Randy’s loss of memory and powers of reasoning. Randy was the smartest man I’d ever met, rational and clear-thinking. He was devoted to his children and did everything in his power to love and protect them.
That’s why it made no sense to me whatsoever that he was so cavalier about the way he later took his medications. After we moved to Virginia, one of the side effects of the palliative chemo drugs was neuropathy in Randy’s fingers. Without the ability to feel the tips of his fingers, holding pills was very difficult. Many times Randy would drop the medications on the floor and lose them, which was a big issue because we had little children in the house who could easily put them in their mouths thinking they were candy. I did not know what effect heart and kidney medications might have on a thirty-pound child, and I honestly didn’t want to find out. With Wanda’s support, I suggested to Randy that he let me put his pills in a paper cup so he could more easily get them into his mouth and would be less likely to spill them. Randy stubbornly would not agree to this plan; nor was he willing to come up with an alternate solution to what I saw as a clearly dangerous situation. It was unlike him to be irrational or to put his children at risk. But what could I do? I could have taken away all the medicine bottles and dispensed his pills as if he were in a hospital. However, this would have gotten Randy’s hackles up, and there would have been no living with him. He wanted to feel in control of his life at a time when he was losing control of his body and mind. I didn’t want to add to his feelings of powerlessness, but I had to protect our children.
Wanda agreed that it was a very difficult situation for my family to be in. Just her acknowledgment that I was in a terrible predicament gave me a sense of relief, a sense that I wasn’t crazy or overreacting. Given that Randy wouldn’t accept his medication in a cup, I became hypervigilant about checking his medicine table, his pillbox, the bedside table, the bedroom floor, the bathroom sink and floor, and the kitchen table and floor for any medicine he might have
dropped or bottles he might have left open. I knew the times he was supposed to take medication, and I followed up to make sure he had remembered to do so. After checking with him, I would surreptitiously scan the areas to make sure nothing had been dropped. I had to accept that I couldn’t force Randy to do things my way, but I had to keep our children as safe as possible while ensuring that Randy was in fact taking the medication he so desperately needed.
There were bumps along that road. Once, when I came in to see how Randy was doing, to make sure he was OK and had taken his medications on time, I found the pillbox empty and pills all over the floor. I was very upset because the bedroom door had been wide open and the children could have easily come into the room. When I asked Randy what had happened, he shrugged it off and said he didn’t really know. I just stood there with my mouth open surveying the mess all over the table and floor: eighteen different medications, some taken several times throughout the day, mixed up and spread around. I was baffled by his nonchalant attitude and puzzled as to how this incident could have occurred. Did he fall while holding the pillbox? Not likely, I thought, because I had not heard a crash, he clearly wasn’t hurt, and the medicines wouldn’t have spilled out with their little plastic doors closed. Randy wouldn’t have opened all twenty-eight of them. Could he really not remember what had happened, or was he hiding something? Was his short-term memory being affected by the cancer or by the drugs? What was I supposed to do to keep the children safe and still allow Randy to be in charge of his medications?
I didn’t have the answer to those questions right away, so I sat down on the carpet and started picking up all the pills to refill Randy’s medicine box. I could call and talk to Wanda, who would
not only listen and sympathize with me, but would also talk with Randy as a neutral third party and figure out if he needed more help or had developed some new condition because of the disease. As a caregiver, one has to be hyperaware of the subtle changes in a loved one’s behavior and physical aspect. Sometimes the changes are slow and imperceptible; sometimes they are dramatic, as disease takes not only the body, but the mind as well, and the pain can drive a person into a state of aggression or fear. You have to adjust your routines, your tactics, and your mind-set to keep up with ever-changing needs. The dynamics between two people who are forced into new roles as caregiver and patient can make the challenges to help, to accept help, and to love that much greater. With Wanda by my side, I had help to address these demands, and I didn’t feel alone because Wanda was such a big presence in our lives.
Many times Wanda would reassure me that Randy was all right and death wasn’t knocking on the door. That is, up until the second week of July when she came over to check Randy before we went up to Pittsburgh for a cancer tissue biopsy and leukapheresis, to create a customized vaccine. Leukapheresis is a process in which blood is withdrawn through an IV, transported into a machine that extracts some of the white blood cells, and is then returned through a second IV. It’s a loud and scary looking piece of machinery, but the process isn’t painful. At least that’s what Randy said. I was terribly uncomfortable about it nonetheless. Dr. Zeh explained that once he had Randy’s white blood cells, his lab would extract the dendritic cells, which are part of the immune system, mature them, and mix them with his tumor to be given as a vaccine.
Up to this point, Randy continued to pursue treatments with toxic side effects even as he got weaker and weaker. Now his system
could no longer recover. The vaccine gave him hope that he could continue to fight the cancer without the terrible side effects of chemo. It would take three weeks to make from his white blood cells and tumor samples, and Randy was determined to live long enough to get it.