Dream New Dreams (17 page)

Another topic Randy brought up during our discussions about dying is one that many terminally ill people talk about with their doctors, nurses, and loved ones: euthanasia. Randy introduced the topic by saying he did not want to linger long, an end that he felt would be a burden to me and frightening for his children. He didn’t want to take up unnecessary resources, either. In his mind, the end-of-life
scenario would entail his slipping into a coma for a period of time, because that’s what happens in the majority of pancreatic cancer cases. If that were to come to pass, he asked me if I would give him a large dose of pain medication that would speed up the dying process and allow him to die quickly. I was stunned.

Since the time of our conversation, I’ve come to understand that this is a common discussion for which caregivers should prepare themselves, but I wasn’t prepared for Randy’s request, and I instantly recoiled. I’d given in to a lot of his requests, acquiesced to many of his wishes, but I knew in my heart I could not do this, even if I knew he would never wake up. I told him how much I loved him and respected him, but I just couldn’t agree to administer an overdose. The biggest reason was that I couldn’t risk our hospice nurse or some other medical personnel discovering that Randy had died by my hand. I couldn’t risk going to jail, couldn’t think of what would become of my children with their father dead and their mother imprisoned. Randy didn’t get angry at me. He didn’t try to bully or badger me, because he understood. The conversation was over, and he never brought it up again. Having asked the question, Randy knew where I stood on the issue, and I understood his fears. I would do everything I could for him—up to a point.

I know this is a sensitive topic to bring up, but it’s a natural part of the dying process. I’m not advocating a particular position in regard to euthanasia, but rather trying to bring light to the fact that when faced with dying, many people will talk about their fears and possible ways to avoid living their worst nightmares, even to the point of considering euthanasia. I want to point out that the caregiver’s role in health care decisions and other end-of-life care decisions is a normal, necessary part of the process. No one should be afraid to engage in these discussions or feel them inappropriate.

Even though I found our conversations difficult, awkward, and painful at the time, they benefited me tremendously. If we had never discussed Randy’s last wishes or not had the legal paperwork in place, I could have been in a terrible position. I felt prepared for the worst, and I understood Randy’s fears, which in turn helped me be supportive of him. With all the funeral arrangements out of the way, I could allow myself to grieve. There would have been too many emotions and too little analytical presence of mind to make well-thought-out choices. So even though it was awkward at moments, our openness to carry out the most morbid of tasks turned out to be a blessing for me. Our pragmatic approach also worked brilliantly in terms of preparing our children for their father’s death.

I
MIGHT NOT HAVE BEEN PREPARED
for the precise day and hour that Randy passed, but I felt confident in speaking with our children about their father’s cancer and his death. Randy and I had spent many hours with our counselor learning about our young children’s developmental stages, how they understood time and death, when to tell them about his illness, and ultimately how to break the news to Dylan, Logan, and Chloe when their father had died. To make sure I didn’t forget anything, I wrote down talking points on index cards and rehearsed them over and over again. I didn’t want to miss a single detail when the time came to break the sad news. I knew my emotions could easily get the better of me. Like any parents, we wanted to spare our children any pain we could, but we also wanted to address their fears and concerns so they wouldn’t harbor any guilt, either.

When Randy was first diagnosed with cancer and was scheduled for surgery in September 2006, we sat down with Dylan, who was four years old at the time, to tell him his dad was sick. Randy had assured Dylan that he would not catch Daddy’s illness. After the Whipple surgery, Randy showed the boys the long, ugly, yellow scar that ran from his breastbone down past and around his belly button. Logan was fascinated by the scar and would point to Randy’s torso and say, “Boo-boo!” Like a warrior showing his battle wound, Randy would lift his shirt to reveal his incision and reassure Logan that his boo-boo was getting better or that his boo-boo was all better now.

After Randy completed chemotherapy in April 2007, he, the children, and I celebrated with balloons and sweets. Then we never mentioned the cancer again to the children. Out of sight, out of mind. It was easy for our children to forget that there was a monster lurking in the shadows of our lives. Randy looked the picture of health: he regained some weight, exercised at the gym, went to work, slept in the master bedroom with Mommy, played with his children, and enjoyed a seemingly normal, worry-free life. In short, he acted just like any other person without cancer. Randy and I were careful not to express our secret fear that the cancer would return. So the children forgot about living with their aunt and uncle for two months while their father underwent chemotherapy and radiation in Houston. They no longer could recall the skinny daddy who was cold, tired, and grumpy all the time and slept in the basement. All they saw and knew was this daddy who was living life to the fullest.

After the cancer returned in August 2007, we consulted our counselor about the appropriate time to tell the children about their father’s condition. She told us we should wait until Randy was physically symptomatic and not likely to rebound. Her point was that we didn’t want to have the conversation too early, because the
children would only worry that their father would die today, tonight, or tomorrow. We had been told that Randy had three to six months of good health, but it could be shorter or longer. It was hard enough for us to live with this knowledge; a six-year-old would be much less able to live with it. We wanted to spare the children any pain and anxiety that we could. It was also difficult to know if or when Randy would recover from a setback. So, per the counselor’s recommendation, we waited until any of the children showed signs of stress or asked directly what was wrong with their father.

By June 2008, Randy was visibly sick and uncomfortable. We could no longer say that the boo-boo was better. Whereas before, Randy could keep up a front of smiles and energy, now he would often grimace from pain, put his head down on the dining table from exhaustion, and place his hands on his hips and bend over in severe discomfort. He complained repeatedly about how tired he was. He no longer came downstairs on a daily basis. He did not participate in the bedtime ritual, nor could he bathe the children or read them stories. Sitting outside to watch the children play or enjoy the weather became rarer and rarer for him. All these things, of course, the children noticed. One time Dylan got a pillow for Randy to lay his head on. He colored pictures hoping to help his dad feel better. As the oldest child, six-and-a-half-year-old Dylan was very concerned that Randy wasn’t well. At three and a half years of age, Logan could sense the stress in the room and would act out, becoming loud and hyperactive. My behavior also contributed to their understanding that something was amiss. I was always asking them to be quiet while Daddy was asleep or to be gentle with Daddy. I was on edge anytime the children were around Randy, afraid that their noise level would overwhelm him or that they would wrestle
and end up hurting him, since roughhousing had been one of their favorite games.

Our house was a bit of a circus, with a steady stream of friends and family coming to stay or stopping by for a visit. Of course, the children noticed and asked why we had so many guests. As nonchalantly as I could, I explained that people wanted to see Daddy because he wasn’t feeling well. Children are very perceptive; even when you don’t talk to them about what is worrying you, they can sense something is wrong. They might not know how to ask, or they may not want to ask, but they express their emotions in other ways, such as Logan’s noisiness. Everyone kept an eye out for any signs of stress: our nanny, uncles and aunts, grandparents, teachers, visitors. Anything that seemed out of the ordinary, such as being over-emotional or expressing concern about their father, was relayed to me. Sometimes I would discuss it with Randy, but most of the time I would share it with our counselor, relying on her expertise to help guide me to the appropriate time to tell the children about their father’s condition.

On Father’s Day 2008, I knew the time had come. As yet another visitor prepared to leave our house, Dylan ran and hid behind the clothes hamper in Chloe’s room. Rachel came to tell me he was confused and upset; he wouldn’t come out from behind the hamper. I went upstairs to talk with him, and after a few minutes, I realized it wasn’t Uncle Jack’s departure that was bothering him, but rather Randy’s condition. I remembered what Dr. Reiss and I had discussed; the index card points were so vivid in my head that I felt confident. I knew I was prepared.

I started by asking Dylan if he knew what was wrong with Daddy. “No,” he said. Then I asked him if he had any ideas, letting him take
his time, not rushing him or trying to lead him in any direction. Finally, he said he thought Daddy was sick. At this point I asked him if he wanted to know more about his father’s illness. If he had said no, I wouldn’t have pushed the issue; I would have comforted him. However, Dylan said he wanted to know. It was time to have one of the hardest conversations I would ever undertake.

I started by telling Dylan that Randy’s cancer had returned, using the same analogy we had in the fall of 2006: cancer was like a weed in a garden. Now that the weed was back, it was making Daddy very sick, and the doctors were giving him special medicine to help him get better. However, the medicine was so strong that it also made Daddy feel bad. Dylan listened attentively and quietly while I talked. I reassured him that none of his actions had caused the cancer to return, nor could he behave in a certain way that would make Daddy get better. Young children are egocentric and believe their actions can influence or actually cause certain events in their worlds; some children feel it is because of their behavior that their parents get sick or get divorced, for example. Conversely, they may think that if they behave in a certain way, their parents will get better or get back together if they are separated. I also explained that Daddy didn’t want the cancer to return and emphasized that he was doing everything he could to get better.

That’s a lot for a kid to process. But our little guy is so perceptive, so bright, that he took a direction I wasn’t expecting and dragged me into uncharted territory. Dylan asked, if I had to bet, would I bet that his Daddy was going to die from the cancer? Wow! I was lost with this question, though, upon reflection, I shouldn’t have been, since Randy had taught Dylan the concept of a wager. I didn’t have an index card with a ready answer! I knew I couldn’t
tell him what I truly believed, nor did I know exactly when Randy would die or that a miracle wouldn’t happen. So I truthfully told him I was afraid to answer his question. When he asked why, I explained that I was afraid he would be angry with me if I said Daddy was going to live and then he died or, on the other hand, if I said Daddy would die and then he lived. He seemed to understand my dilemma and promised he would not hold it against me if I guessed incorrectly. Then I told my six-and-a-half-year-old son his father would live. I hugged him close to me and told him that no matter what happened, I would take care of him and that there were lots of people who loved him. His grandparents, his aunts and uncles, his cousins, and friends loved him too and would also help take care of him. He was not alone.

Immediately after our conversation, I went to find Randy; he needed to know that Dylan knew. No sooner had I told him about our conversation than Dylan appeared and asked Randy point-blank if the cancer had come back and if he was going to die. Without missing a beat, Randy assured him he was doing his best to fight the cancer and went through the same talking points I had. Dylan seemed relieved that he could talk to us about the cancer and about his fears. His mood was upbeat; Randy’s was not. I asked Rachel if she would take the kids to the playground for a little while so I could be alone with Randy.

As soon as the car pulled out of the driveway, Randy collapsed on the ground in tears. He was crushed by the powerful emotions; I could only imagine what he was feeling. All I could do was hold him. What a way to end his last Father’s Day.

For me, it was a relief to tell Dylan and then the other children that their father had cancer. It allowed us to acknowledge the elephant
in the room—the elephant we had worked so hard to hide from their eyes. I’m a terrible liar, and I don’t like keeping secrets from people. Although I believe it was the right thing to do, I still felt a tinge of guilt in withholding this information from our children. Keeping up the appearance that everything was all right, that our lives were moving forward on a normal trajectory, was its own burden, one I was happy to shed.