Chapter 5
Of course, life went on as we continued with our normal routine. Mom was still working at ACT, and Dad still took care of us. We didn’t talk much about his being sick. After that first big conversation with Mom, it became something we lived with but didn’t focus on. My parents didn’t hide it—I knew that it was serious enough that Dad had been put on a list for an emergency liver transplant—but since being sad couldn’t fix anything, we just continued on as usual and hoped for the best. Every night I prayed for the cancer to go away. Every day I acted like nothing was wrong.
Maybe, more than anything else, this is what it takes to be a successful performer: you keep going. Hurt yourself in a rehearsal? Keep going. Lose a competition? Keep going. Get turned down for a part? Keep going. Someone you love gets sick? Keep. Going.
Dad’s having cancer was, in a weird way, a lot like auditioning for a show. I was constantly hoping to hear news, good or bad.
Over the next few months, things changed gradually, so that it’s hard for me to pinpoint exactly what happened when. Day by day, Dad had to take things more slowly. He started getting up later in the morning and going to bed earlier. He lost weight. The cancer was hard on his body. He had no energy and couldn’t eat. He didn’t lose his hair, but it became gray and thin. Some days he got up from bed just to sit on the couch until it was time to go to sleep again.
“I’m going to be fine,” Dad said, whenever he caught me looking at him. “Alex, everything is going to be okay.”
Then he’d grab a magazine and pretend to chase me around the house, like he had when I was little. But it was impossible to deny that he was sick, and that meant there were things he just couldn’t do anymore.
“Boys, I need your help,” I remember Mom telling us. “We all need to chip in around the house to keep things running.”
Matt and I started doing more of the chores, the cooking and the cleaning. John did all that and took on the job of taking care of Matt and me—and continued working at Fareway grocery store to bring in money.
This was when the dance studio really became my second home. I was there nearly every day, sometimes until ten o’clock at night. It was my safe haven, the place where I could go to forget about Dad’s cancer. In Michael’s studio all I thought about was dance: the rhythm, the way my body flowed with the music, the single-minded drive to learn a step so that from the tips of my toes to the ends of my fingers it was perfect. Everything else in life was messy and complicated, but here, things could be perfect.
Dance was the happy place I went to, in order to drive all the other thoughts away. Just being physical made things seem better. Talk to any athlete, and we’ll tell you the same thing. If we’re sad, or upset, or just feel like we’re completely stuck and can’t see a way forward—we get up and move. It won’t change the world, but it might change the way we feel about things. And once we feel different, we can change our world.
But even at the studio there were problems.
“We have to save more money,” I remember Mom telling John and me one day. “We’re going to have a lot of medical bills.”
Mom had great insurance through the ACT, but even with a good job, it was hard to raise three boys, pay for Dad’s treatment, and keep a roof over our heads. Much as I loved them, it became harder and harder to justify paying for dance lessons. And it wasn’t just the lessons: there were the costumes, the travel costs, the competition expenses. It all added up.
Thankfully, Mom had a brilliant idea.
One day after rehearsal, she asked Michael if they could talk. Michael was very close to our family, and she could tell something had been wrong for a while.
“Sam is sick,” Mom told Michael. “He has cancer.”
“Oh, Tammie,” Michael said, putting her hand on Mom’s arm. “I’m so sorry.”
“Thank you,” Mom replied, nodding slightly. She squared her shoulders and took a deep breath. I knew what she was about to do was hard for her, and I knew she was doing it for me. I took her hand in mine and squeezed it.
“Money is a little tight right now,” Mom continued. “Is there any way I can help out around the studio so the boys can continue taking classes?”
“Of course!” Michael responded instantly. “You know I love having them here. Don’t worry—we’ll make this work.”
Soon it was settled. Mom would help Michael with her computers, her spreadsheets, and the costumes. In exchange, we would get a full scholarship for our classes.
This was good because Dad’s cancer was worsening fast. I didn’t know a lot about liver cancer before Dad was diagnosed, but I soon found out that it’s a pretty bad kind. Only 14 percent of people survive more than five years after being diagnosed. The best chance of surviving is to have a full liver transplant, but that means finding a compatible donor, which can take a while. A liver isn’t like a kidney, which people have two of. Everyone has one liver, and they need the whole thing, so we were waiting for someone with a healthy, compatible liver to pass on. It made me realize how important it is to be an organ donor. Donors literally save lives. As soon as I’m old enough, I’m going to register to become an organ donor. I know it’s what Dad would have wanted.
I became totally focused on Dad getting a liver transplant. I thought that as soon as he had a new liver, he would be fixed—like when you put a new battery in a remote control. I know that’s naive, but I wanted to believe there was an easy solution to all our problems. So when the call came in early January telling us there was a liver waiting for Dad at the hospital, I was overjoyed. Finally, I thought, our lives would go back to normal.
I was so wrong.
Liver transplant surgery is really delicate. One inch in the wrong direction, and who knows what they’d be cutting through? They told us that Dad’s transplant could easily take twelve hours, so we packed up everything we thought we might possibly want: games, movies, books, snacks, you name it. We even had a portable TV. We were ready for the long haul.
When we got to the hospital, they rushed Dad off to get ready for his surgery. Mom, Matt, John, and I settled into the waiting room, where we waited . . . and waited. Twelve hours went by before someone came to see us.
“I’m very sorry to tell you this,” said Dr. Katz, our surgeon. “But Sam isn’t going to have a transplant today.”
We were so confused, I felt like crying. No one told us this beforehand, but here’s how liver transplants work: After you’re diagnosed, your name goes on a list. Everyone on the list is checked and double-checked to make sure they’re healthy enough to survive the transplant. Unlike with other organs, it doesn’t matter how long you’ve been waiting—the only thing that matters is how much you need the liver, and how likely you are to survive the surgery. In a way, Dad was lucky, because he was pretty healthy (other than his liver), and he desperately needed the transplant. So he shot right to the top of the list. That’s why it was only a few months after his diagnosis that he got called in for surgery.
But there are so few healthy livers available that anytime someone is up for a transplant, the doctors always bring in a backup recipient, in case something goes wrong or the first person fails their final physical. If they didn’t have a backup person prepped and ready for surgery, the donor liver might not still be viable by the time they find someone else. They don’t tell you that you’re the backup, because they’re worried you might not take it seriously if they did.
This time, Dad was the backup. I was crushed, but I tried not to let it show because I knew it was worse for him. When they wheeled him back to us, he was quieter than I’d ever seen him, as though his mind were far away.
“Soon,” Dr. Katz told us. “You’re at the top of the list now.”
Twelve days later, the hospital called again. This time, Dr. Katz assured us, it was the real deal. So we repacked our portable TV and headed back to the university.
“Good luck,” I told Dad as they prepared to wheel him away. He held my hand gently.
“I don’t need luck,” he said. “Remember, everything is going to be okay. I’ll see you when I’m done.”
Outside the hospital windows, it was gray and chilly. January in Iowa can be viciously cold. But inside, I’d never felt so warm.
“This is your father’s best shot for beating the cancer,” Dr. Katz had explained. As we sat in the waiting room, with its bright fluorescent lights and soft-carpeted floors, I imagined what it would be like to wake up tomorrow and know my father was better. It sounded like a dream come true.
But as the hours passed with no word from the doctors, I grew more and more worried. What if something had gone wrong? We hunkered down in the waiting room like a city under siege. I tried to play a game, or read a book, but I couldn’t concentrate on anything. It grew dark outside, and the wind moaned against the bare trees. All the bad omens I’d looked for on the day of Dad’s diagnosis were here now. I just hoped they didn’t mean anything this time.
Matt and I napped and ate and did our homework. Sometimes we talked, but it was hard to keep a conversation going when we all knew what was happening in the operating room. Just about the only thing I could pay attention to was The Princess Diaries, one of the few movies we’d brought with us. It was just the right amount of mindless fun. Matt and I must have watched it three or four times that day.
Finally, after ten hours, Mom couldn’t take it anymore. Before I was born, she had interned at the hospital during her PhD program, and she still knew people in the administration. After a bunch of frantic calls and a whole lot of waiting, she got some answers.
“They’re having trouble with the incisions they need to make to do the surgery,” an administrator told her. “And there have been some minor complications.”
“What do you mean?” Mom asked.
“The donor liver is unexpectedly large, but everything’s all right,” the administrator hurried to assure us. “Dr. Katz has him open on the surgical table, and he’s working on it.”
My heart nearly stopped. I couldn’t believe what they were saying. My dad—my happy, loving dad—was on a table somewhere, cut open, empty. Unless they got the new liver in fast, they’d have to put his old one back in, which meant the cancer would have more time to spread. Every day he spent with his old liver inside him brought him closer to death. If I could have given him mine, I would have.
Mom continued talking on the phone, and we found out it was even worse than we had imagined. Dad had an old scar on his abdomen, from a previous surgery, and it was right where they needed to make the incision for the transplant. But scar tissue is tough, and it made the entire surgery that much more difficult (and painful, and harder to recover from).
“He’ll be in the O.R. for at least a few more hours,” the administrator finished. “At least.”
In the end, Dad was in surgery for eighteen hours. But it was a success. The liver ended up fitting, though just barely. Because of the scar tissue, Dr. Katz had to cut Dad up and restitch and restaple him numerous times. The IV that gave him blood transfusions through the arteries in his neck kept collapsing, and they had to redo it over and over again. By the time they were done, he was like a pincushion—and he’d received nearly six liters of blood. That’s as much as the average adult male has in his entire body. In recovery, he looked almost Frankenstein-ish. We nicknamed him “Liver Bumpy,” because you could literally see where the big new liver protruded from Dad’s otherwise skinny frame.
To this day, I don’t know where that liver came from. I don’t know the name of the person who gave it to us, or what their life was like, or who they left behind. I don’t even know if it was a man or a woman. But I will be in their debt forever. Thank you, whoever you are. Thank you. You didn’t just give a profound gift to my dad, you gave a gift to our entire family.
Even once the surgery was over, it was a long time before our family returned to normal. In fact, now that I think about it, we never really did. The next two years would bring one big change after another. My life wouldn’t have any real “normal” or sense of routine until I found myself on Broadway, which is about the most abnormal normal I can imagine.
But Dad had a long road ahead of him, and I would be alongside him the entire way.