Dream New Dreams (6 page)

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.

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 middle 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.

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.