Dream New Dreams (11 page)

At the end of summer, Randy was scheduled to return to Houston for a CT scan to see if the cancer cells had fought back and begun multiplying again. In August 2007, Randy and I made our travel plans but treated this trip as a romantic getaway for the two of us to reconnect, building in some time to go to the hospital as well as having a little side trip. Before seeing the oncologist to get the results from Randy’s scans, we traveled to Galveston Island to experience one of the country’s biggest indoor water parks: Schlitterbahn. Like amusement parks, water parks were high on our list of fun activities. This visit to Schlitterbahn without children harked back to the days when we were dating and first married, without kids, when we would go to the local water park in Pittsburgh to spend the day together riding all the slides. Seven years later in Galveston, Texas, we were having the time of our lives. We tried every slide in the seventy-thousand-square-foot park! Some were very tall, and we had to climb flights of stairs after waiting in long lines. Other slides were twisty and short. And of course there was a long lazy river, which we floated down holding hands as though we didn’t have a care in the world. This excursion would not have been possible just four months earlier, when Randy was so depleted from chemotherapy. Instead, he was like his old self, like the Randy I had first met and fallen in love with: energetic, upbeat, full of kidlike
excitement to try the next ride. It was a wonderful day, a sweet memory I treasure.

After such an upbeat experience, we walked into the oncologist’s office in Houston full of confidence that the cancer had not returned. Nevertheless, we both experienced the usual “scanxiety”—the nervous feeling one gets at the approach of a scan date. Everyone who has ever had cancer feels anxious and a bit worried as a scan date approaches, even someone who has been cancer-free for ten years. Still, we felt pretty sure that Randy would dodge another bullet. How could he not? He looked and acted so healthy!

As we sat in the waiting area to see the oncologist, I remember looking around discreetly at the other couples and families. Statistically, someone sitting in that waiting room was going to hear bad news. I wondered who it might be. Usually when a patient and loved one would exit an examining room area crying softly, we collectively looked away while our hearts sank in our chests. I remember thinking that would not be us today. Not today. That’s all I could hang my hat on.

Randy worked away on his laptop. I knew he was worried, but he kept it to himself. Then it was our turn. In a flash, Randy put away his laptop, slung his backpack onto his shoulder, and jumped to his feet. Once back in the examining room, he underwent a routine examination from the nurse. Then we were left to wait on our own for the oncologist. I can’t remember what we talked about in our last few moments of hope. Because that’s what we were living in: a bubble of hope about to pop. Then Randy’s curiosity got the better of him, and he started searching through his medical records, which the nurse had left open on the computer.

Maybe it was better that he discovered the scan and saw the tumors growing inside him than hearing it first from the doctor.
Maybe it gave him the opportunity to see for himself, to know—really know—that the cancer cells had outsmarted all our treatments and were rapidly multiplying. We both knew that when pancreatic cancer metastasizes, there is little hope that further treatments will arrest its growth. When he blurted out, “My goose is cooked, Jai,” and he started counting the tumors, Randy had accepted the trajectory his life had now taken. A cure would be next to impossible—that ship had sailed and with it our hope. His mind had embraced what his eyes saw. I, on the other hand, scrambled out of the chair to look over his shoulder. I tried to find the error in the data. “It’s an older scan, not the one from this trip,” I reasoned.

He corrected me. “No, it’s the most recent scan. Look at the date.” He started looking through more files on the computer to confirm what he believed. I told him I needed to go to the bathroom, and I slipped out the door to find the nurse in charge of the protocol regimen. I explained to her that Randy had been poking around in his electronic files and asked her to see him quickly because Randy believed he was going to die. I thought she would set him straight. He wasn’t an expert on their computer system, I reasoned. He couldn’t be trusted to read this information and interpret it correctly. I was searching for an explanation, not wanting to accept what we had seen: dark spots all over Randy’s liver and spleen. Surely there had to be some mistake. I kept thinking this as I splashed my face and washed my hands. I returned to the examining room expecting the nurse to have disabused Randy of his silly notion.

Instead of the scene I had expected, Randy and the nurse sat there looking sad. Moments later, the oncologist entered the room and carefully confirmed that Randy had read his scans correctly: the cancer was back. He said it was as aggressive a return as he had ever
seen: nine tumors in the liver and too many in the spleen to count. Three to six months of good health was all we could expect. Then he started talking about palliative care strategy with Randy.

My mind was racing to understand the turn of events. I was confused about what palliative care meant, and the doctor explained that they would now focus on slowing down the cancer in order to buy Randy as much time as possible, but the goal was no longer to eradicate the disease. I couldn’t fathom the idea that my husband wasn’t going to win, that he would one day very soon not be tubing with me at a water park or winning an extra-large stuffed animal. How Randy was able to accept the situation, his death, so calmly and quickly is something I’ll never fully understand. Maybe he was able to disconnect his intellect from his emotions more easily than most. Maybe it was because he was an excellent chess player, former captain of his high school chess team, always two steps ahead of the game. He did his research, knew the statistical probabilities for various disease advances and scenarios, and understood that a recurrence almost always ended in death. Science was his faith, and he understood the world in which we live according to its laws. The steps for dealing with pancreatic cancer were quite clear. The first rule was to remove the cancer via surgery. The second was to kill the millions of tiny defective, replicating cells with toxic chemotherapy and radiation. The third was to get your affairs in order if the cancer comes back. In Randy’s case, he had been successful in following the first rule, but had failed to succeed at the second, which resulted in the third situation. It was black and white to him.

But not for me.

“What about a liver transplant, even a pig’s liver?” I asked. Randy and the oncologist shook their heads. No surgeon would do a transplant after cancer has metastasized, because by then the body’s circulatory
system is flooded with cancerous cells. For a successful transplant, the patient’s immune system has to be suppressed, during which time the cancer would gain a foothold in other organs or perhaps in the transplanted organ. In the end, it would be a waste of resources and time. And time was precious.

I think it was about then that I started to cry uncontrollably. “That’s it?” I asked incredulously, beginning to sob in one of those really embarrassing, she’s-lost-it kind of ways. The doctor came and sat next to me, holding my hand. It was the first time he had ever had any physical contact with me. He usually sat in front of the computer after having examined Randy and consulted the lab results displayed on the screen. The conversation stayed in the technical realm. Now, our oncologist showed how truly great he was: he showed us his compassionate side, comforting me by talking to me in a calm and soothing voice and explaining what medical science now had to offer Randy. Randy stood watching us, an observer of the scene. I was the emotional wreck, not my husband, when it was he who was going to die. I sat there crushed, sobbing and sniffling. Cancer had blindsided me again.

When we left the examining area and entered the waiting room, I had my emotions under control, but my face couldn’t hide the bad news we’d just received. Randy and I leaned on each other, holding hands as we walked past our comrades in the cancer wars.

A week after we had left Houston with our hearts and spirits broken, I was in Virginia looking at houses with my brother. It was mid-August 2007. We were putting Plan B into effect immediately, even though I had great trepidation about moving and leaving behind our good friends and strong community ties. Before I left on a return flight home at the end of the day, I put an offer down on a house. Negotiations broke off, and I went to look at more houses.
Within twenty-four hours, I came home with a house under contract and Dylan enrolled in the local public school. Now we had less than a month to pack up our lives and move so Dylan could start kindergarten after Labor Day.

There were many loose ends to take care of in Pittsburgh, the sale of our house being only one of them. Friends offered to help us in so many ways. A very generous Carnegie Mellon alumnus bought our house and donated it to the university, which freed both time and money for us. Others volunteered to pack up our house the day before the moving van arrived. The school at which we had enrolled Dylan refunded the tuition we had already paid for the coming year. Electricity, gas, telephone, water, garbage pickup, checking, and savings accounts all had to be terminated or closed. In the chaos, with so many details to take care of, Randy and I were diverted from what the move signified: Randy was going to die.

At this time, the children thought we were moving to Virginia to be closer to my family. We didn’t tell them the cancer had returned, because Dr. Reiss had advised against it, saying that until Randy
looked
sick, we shouldn’t say anything. Children have a different sense of time than adults. Dylan, Logan, and Chloe could conceptualize today, tonight, and tomorrow. If we told them how long Randy was expected to live, they would think he was going to die today, tonight, or tomorrow. It’s kind of like when the first of December comes along and for the next twenty-four days, the children ask, “Is it Christmas yet?” We didn’t want to worry them or place undue stress on them. So we acted as though our move was a wonderful decision to live closer to family.

I kept a running list of to-do items so I didn’t forget anything, but sure enough, there were a few glitches. Packing day was a logistical
nightmare. Fifteen people showed up at our house, grabbed boxes, tape, and marking pens, and got down to business. I ran from room to room answering questions and troubleshooting. We were getting dangerously low on boxes, and I had been calling the moving company, asking when they would be delivering more. Each time I called, I was reassured that the driver would be at my house any minute. Most of the volunteers had to leave by lunchtime to get back to work, and without them I wouldn’t get the packing done before the moving van showed up the next day.

Then Dylan came down with a fever, and I had him rest in the back bedroom so he wouldn’t be disturbed. Our sitter took the other two children out of the house so they wouldn’t get underfoot amid all the people and activity.

While our friends and colleagues were packing up our worldly possessions, Randy went to the oncologist’s office for his first round of palliative chemotherapy with gemcitabine. He called me in the midst of the packing turmoil to tell me his white blood cell count was low, meaning he was more susceptible to infection and sickness. “Should I take the chemo and drive my white blood cell count down lower or wait till we get to Virginia to take any more chemo?” he asked me. My brain felt as if it was melting under all the stress and pressure. I knew Randy would have a tough reaction to the drug. We were starting a two-day drive the next morning, and I needed him to be able to drive his car to Virginia. We also had a sick child whose illness could be a risk factor for Randy in a weakened condition. “Let’s just wait till we get to Virginia,” I said. I didn’t share with him all that was going on at the house; his focus needed to be on slowing the cancer’s growth. So I went back to the packing party and my sick child and called the moving company once more to find
the missing boxes before I lost all my help and my mind. So many factors were outside my control. I kept trying to be that reed in the wind and bend with the force moving against me.

In this way we established a pattern: I took care of the details of our day-to-day lives while Randy concentrated on winning more time from death. We had spent a lovely summer interacting as a family, one in which there was a healthy father, but now we were moving into a different dynamic. I was slowly becoming the head of the household, making most of the decisions on my own, whereas before, Randy and I had been a team. Now I had to take the lead and rely on my best judgment. It was the start of a long and lonely road for us both. Soon, Randy’s path would not only lead to various oncologists along the East Coast, but also take a surprising turn after he delivered his now famous last lecture at Carnegie Mellon University on September 18, 2007. So much had happened to us in one year. And yet there were more unexpected and challenging experiences that lay ahead.