Dream New Dreams (16 page)

When Wanda came downstairs from checking Randy, I was going over child-care instructions with our babysitter, who would stay with the kids for the two days we’d be gone. Wanda and I talked briefly; she didn’t think he was up for the biopsy. Always frank, Wanda said to me, “You know he’s dying, Jai.”

“Of course he’s dying, Wanda! I’ve known that for months.”

Then it dawned on me. Wanda had been my GPS guiding me through the twists and turns in the road. Now she was telling me we were there. We were at the end of our journey. Wanda was concerned that if we went to Pittsburgh and Randy was admitted to the hospital to undergo these two procedures, his system would fail, and he wouldn’t be discharged. Then I would be in Pittsburgh with my husband dying in the hospital and my children down in Virginia with only two days of child care in place.

Nevertheless, we went. When Randy and I took our last trip to Pittsburgh together in July 2008, we were not getting along. In front of a social worker, he said he felt I was unempathetic: doing a great job of all the things anyone could do, and a terrible job on the things only I could do. Randy was usually very supportive and complimentary of me, especially in front of other people, so his comment caught me by surprise. Even though I was hurt by Randy’s words, by what I perceived to be his lack of appreciation for all I was doing, I knew he was trying to tell me he needed something more of me. I heard him, but I didn’t know what else I could do.
I was already walking a tightrope trying to balance our children’s needs with Randy’s. I couldn’t imagine what more I could do, but I knew I wouldn’t give up on him.

While Randy was recovering from the biopsy at Shadyside hospital in Pittsburgh, I recounted the incident to Dr. Reiss. I felt sick and angry about what Randy had said. “What does he want from me?” I asked. “He wants you to tell him you’re going to miss him when he’s dead,” she said. I was stunned. I had been trying to avoid saying anything like this to Randy for two reasons. One, I didn’t want to make him feel bad that his death would cause us so much pain, that it would cause
me
so much pain. I thought I would be making him feel guilty knowing how the grief would hurt us for the rest of our lives. Two, if I acknowledged both to myself and to him that I would miss him, I would start missing him immediately. I was terrified of the pain, of the grief that was waiting for me right around the corner. I believed that when Randy died, the magic would go out of my life. His absence would mean the end of one of my childhood dreams: to marry a man who truly loved me and to have a family. I was trying to avoid thinking about all this until I had no choice. For the moment, I could defer the inevitable. But Dr. Reiss explained to me that it was far better for me to start the grieving process now, before Randy died, so I could in fact be more empathetic to him. It was important that he see me as vulnerable, not invincible or in any way cold or uncaring. I thought by showing Randy strength I was sparing him from the fear and pain, but I was only causing a different kind of pain: a fear that I didn’t love him as much as he’d thought. If I allowed the pain of loss to seep in now, Dr. Reiss assured me, it would facilitate the grieving process after Randy died.

So I went back to my husband, the man who loved me and showed me he loved me and treated me like he loved me, and I told him I
was going to miss him so much when he was gone. I cried and cried. My facade of strength broke away, melted by my tears, and the raw vulnerable me showed through. And Randy was comforted. In that moment of sadness, we held each other, knowing in our hearts that we loved each other in sickness and in health, until death do us part.

E
VEN THOUGH OUR SURGICAL ONCOLOGIST
and our hospice nurse had told me Randy was in the final stages of dying by the end of June 2008 and even though I could see with my own eyes that his health had taken a dramatic step downward that third week in July, I still wasn’t prepared when, on July 25, I woke up and found Randy dead.

Randy and I had tried to prepare for this. Some of our preparations had begun before the cancer returned and metastasized in his liver and spleen. During the summer of 2007, Randy and I had met with an estate attorney to draw up his will. I became Randy’s medical proxy so I could make medical decisions in the event that he was not conscious or of sound mind to voice his wishes. It was uncomfortable for both of us to contemplate the various ways he might die and difficult for Randy to articulate which medical interventions he would accept and which he would refuse. But the upside was that I knew how to act on his behalf if and when the time came, and that
gave us both peace of mind. After the documents were signed and notarized, we placed them in our filing cabinet and pushed aside a portion of the anxiety that living with cancer causes.

This preparedness was part of Randy’s personality. He liked to call himself a belt-and-suspenders man. In addition to coins and a wallet, Randy also carried a travel-size toothbrush, tissues, and nail clippers in his pants pockets. His laptop bag held not only his computer and power cord, but also a spare laptop battery, various hardware and networking cables, an extra contact lens case, spare glasses, and even spare underwear. It was quite in his nature for Randy to approach death in much the same way as he fortified himself to face everyday life.

The most difficult logistical matter we addressed together was Randy’s funeral plans. Originally, he wanted to donate his body to medical science. Had there been the rapid autopsy programs that some cancer research centers, such as the Translational Genomics Research Institute in Arizona, are conducting today to better understand pancreatic tumor growth and evolution, I would have agreed wholeheartedly. But because that was not the case at the time, I asked Randy to allow me to bury his body, to give us the opportunity to grieve at his passing, and to create a special place for us to visit. My husband heard me out patiently, and then he agreed. I wanted to have a funeral service for Randy, as other family members of mine had had while I was growing up. I knew the ritual, its rhythm, and what to expect. Oddly enough, a funeral offered me a comfortable, familial experience, and I wanted comfort more than anything else at this time. I asked Randy to allow me to have a traditional funeral service for him, with a casket, chapel, hearse, and graveside burial service.

On Monday, May 12, we went together to a local funeral home
and worked out as many of the details as we could. That night I wrote in my journal, “It wasn’t so bad, but it made me think a lot about how I’d like to grieve, what would make me feel comfortable. So I was glad to get the information.” With Randy sitting beside me, it felt more like a business meeting; the ugly event itself seemed far off in the future. Randy wasn’t upset or sad during the visit. His death didn’t seem real at this point. So we were both able to keep our emotions in check.

Like any modern office, the funeral home conference room had a laptop projector and Internet connection to show us various casket companies’ products. Our funeral home director was young and handsome, in the prime of his life and dressed very professionally. He didn’t look grim or speak in whispered tones. Randy and I each felt very comfortable sitting at the conference table with a cup of hot tea and coffee, looking at caskets on the projection screen and asking myriad questions. Like cars, coffins come in all sorts of makes and models, from utilitarian to luxury. Randy leaned more to the utilitarian ones and even considered some of the Orthodox Jewish caskets, plain wooden boxes. Always the out-of-the-box thinker, so to speak, Randy went one step further and explored the option of making his own pine box. He thought he could create a unique experience for himself by hammering together his own coffin. Very interesting idea, I thought, but I didn’t think I could handle watching Randy nail together a casket at our house! So I vetoed that creative idea.

During our hour-long meeting, I envisioned myself at the funeral service, imagining the look of each coffin Randy considered and how it made me feel. Later that night, I wrote in my journal, “I’d like to go back and make the choices myself so I don’t have to contend with Randy and defer to his wishes. I’m going to be the
one sitting in front of that box, and I want it to look comfortable for him.” Reading now what I wrote that night, I realize how unfeeling I sounded. It wasn’t a lack of feeling, but rather the recognition that I would be the person experiencing the funeral, not Randy. The choices we made now would affect me, not him. I came to realize that the funeral is not for the dead, but rather for the people left behind, to help them give voice to their sadness and commiserate with others who feel the same way, missing someone dear and beloved. For Randy’s part, it might have been a therapeutic hour in which he came to terms with his death. As always, he chose to make the best of it. However, I would be living the moment of his funeral. I would be reacting not only to the coffin, but also to the music, the flowers, the service, and the graveside ceremony. All those aspects, which for my husband were intellectual exercises or decisions to be made but not real parts of his future, would become a reality for me. I wanted it to be the softest blow possible. With Randy’s blessing, I went back to the funeral home and chose a casket that looked somewhat aesthetically pleasing to me—not too ritzy, not too austere—with a satin lining and comfy pillow. These details gave me the sense that he would be at ease, even though I intellectually knew this was silly. My choices didn’t have to be logical; I just didn’t want them to make the moment of intense sadness and grief any worse.

With coffin selection out of the way, we turned our attention to the service. Randy wanted to keep the event small and private. He went so far as to insist that only close family be invited. We discussed the service with our minister. Later on, we had a session with Dr. Reiss, our cancer counselor, about whether or not the children should attend. Randy argued that I should not be saddled with the responsibility of looking after our children during a time when I needed to take care of myself. It isn’t uncommon in other cultures
for young children to attend funerals, even though they might not understand the significance of the event, but our culture tends to frown on children’s attendance. We finally agreed to allow Dylan, who was six at the time of Randy’s death, to make his own choice about coming to the funeral service or joining his younger siblings with the babysitter in the playroom at the funeral home. That was our compromise: I could have the children close by me on the day of Randy’s funeral, but they would be in a separate area, unaware that their father’s dead body lay in a coffin in the room across the hall. I made the arrangements with the funeral home in advance to set up a private room for that purpose.

When it came time to choose a cemetery plot, Randy bowed out, saying he didn’t feel up to it; it had been raining for the past couple of days, and he had been experiencing pain and fatigue. I had spent the nights rubbing his feet and back to make him feel better. So on Tuesday, May 13, I went to the cemetery by myself. I called my friend, Cleah, to tell her what I was doing. We spoke for a few minutes while I walked around looking at the cremation plots, which seemed so cramped, one grave marker on top of another. I chose a sunny spot because Randy loved sunshine. No shade trees for him! I also wanted a plot away from the main road so it would be peaceful. And finally, there happened to be a playground abutting the field next to the cemetery. I liked the idea of children playing nearby, their voices carrying on the wind, because Randy would miss seeing his children grow up. An absolutely irrational thought, I know, but the detail seemed fitting and made the location meaningful and special to me. These three elements created a sense of peace inside me. If I had waited to pick out the burial plot after Randy had passed, I could never have thought about all these little details because I would have been an emotional wreck, overwhelmed, with
family and children needing my attention. Randy didn’t ask to see the plot after I had picked it out and paid for it. No doubt it was too difficult for him to stand in front of his body’s final resting place.

He and I had talked at length about his end-of-life treatments with Wanda. He signed a do-not-resuscitate (DNR) order; he did not want any drastic lifesaving measures. We posted the order on the back of the bedroom door in case he had a heart attack and paramedics were called. It was helpful that Wanda had experience in this area; she led the discussion and kept us on track. Fortunately, we never had to use the DNR order, but it gave both Randy and me peace of mind. Our attorney also prepared an advance medical directive, which specified other treatments Randy wanted to have withheld from him. He declined a respirator and artificially administered nutrition and hydration, so that life would not be prolonged and he would be allowed to die at death’s pace. Another document, an appointment of agent to make health care decisions, described similar wishes. It named me as Randy’s health care proxy so I could enforce my husband’s wishes in the event he was unable to do so himself. He also granted me durable general power of attorney so I would be able to take care of legal, tax, business, and medical decisions if he was incapacitated. We had worked on these documents from the summer of 2007 until April 2008. So much thought and discussion went into each that I felt I would truly know Randy’s wishes if I had to act on his behalf.