by Leslie Brody
“The cancer journey can be a time of joyous discovery of inner strength and the beauty of life,” it said.
Yeah, right, we’ll see. We already knew we had a wonderful thing going and appreciated every minute of it. We didn’t need a wake-up call.
Elliot held my hand tight as we walked quietly along the river. For all the little things he’d griped about in the past, he wasn’t complaining about this medical detour at all. We’ll get through this, I thought, and we’ll come out so much stronger.
The next morning we sat down with an elderly oncologist in Englewood. A jazz player in his spare time, he wore a green tweed jacket with a lime green shirt. His cuff links were circles with little green pig faces, perhaps a gift from a grandchild. I couldn’t believe we were meeting on such a potentially momentous matter with a sax man in Porky cufflinks.
“It looks like pancreatic cancer,” he said matter-of-factly, as he looked at Elliot’s charts spread across his desk. “I know that’s not what you wanted to hear.”
I let out a whimper and tried to suck back the tears. I didn’t mind crying but didn’t want to fall apart. There was too much to try to understand. I leaned on Elliot’s shoulder and he rubbed my leg as the oncologist went over various treatment options.
“A lot of lymph nodes are enlarged so surgery won’t help for a cure,” he added.
Elliot asked the question I didn’t dare broach.
“So how much time are we talking about?”
“A year and a half, maybe two if you’re very lucky.”
Excuse me? Where did that come from? I hadn’t the slightest idea things could be so grave. I’d seen many friends recover from breast cancer, so I had the impression that cancer in general had been tamed somewhat—especially for someone as young, strong and determined as Elliot. He was only fifty-five. We had barely begun our life together. There was no way it could be ripped away so soon. My world just didn’t work that way—the naïf in me still believed that if you tried hard and did the right thing, life was supposed to be fair and decent and kind.
Elliot looked dazed. He took a big breath, let it out slowly and shook his head to clear the fog.
“Then again, I have one patient five years out,” the oncologist offered, trying to throw us a morsel of hope. “There are exceptions for all rules about risks and predictions. You have to be like those Roman gladiators. You’d watch them in the movies and think how could they win? But some did.”
He paused to let us absorb all this, and then repeated his advice.
“Be a gladiator.”
We wandered outside, numb, and drove to a Teaneck hospital for yet another test, an endoscopic ultrasound. Finding the site of the primary tumor could affect the choice of chemotherapies. It would take an hour, so while Elliot was sedated I went downstairs to a quiet outdoor courtyard, pulled out my cell phone and called my parents at their house a few hours away in Sag Harbor.
As soon as my mother picked up the phone I broke down. Out came a primal keening wail. I couldn’t stop. I hyperventilated. I could barely speak.
“I’m sorry,” she said, bewildered. “I can’t understand a word you’re saying.”
“They. Say. Elliot. Will. Be Lucky. To Live. Two years.”
“Oh Honey, I’m so sorry.” Her voice cracked. She paused. This news must have been a bolt out of nowhere. “Well, you’ll just have to have as much fun and as many happy times as you can in the time you have left.”
She passed the phone to my father.
“Poor Le,” he said, using my childhood nickname. “It’s just too tough. Too tough.”
I could picture his hand kneading his forehead. “If there’s anything we can do, we’re here.”
I felt so alone in that empty courtyard. I just stared dumbly at my phone. I could not stomach the notion I might have a longer relationship with my stupid 1994 Honda than with the love of my life.
After the procedure, the specialist announced he had finally found “the structure,” a small offender—maybe three centimeters—in a very bad neighborhood. He drew a picture with a blue ballpoint pen.
As meticulous as I was about saving mementos, I had zero desire to keep that sketch.
Kate and Elliot at a Mets game, Fall 2006.
WIN THIS FOR MY BOYS
August 2006
Thanks to a last-minute cancellation, we got an 8:30 appointment the next morning at Memorial Sloan-Kettering Cancer Center. We were so anxious to make it that we got up at 5:00 a.m. to catch a train to New York. We arrived more than an hour too early.
“We could have taken a later train, but we weren’t sleeping anyway,” I rationalized.
“But I could lie there with you awake,” Elliot replied. “That’s even better.”
That would have been swell. He always used that word, swell. I liked its old-fashioned Mayberry quality.
We could have used some extra rest. That first visit was a marathon. Sloan-Kettering always meant waiting around for hours and hours. Regulars knew to surrender the entire day. This place would be a wildly inconvenient choice for the long term, but Elliot wanted to be treated at the institution he saw as the gold standard.
When you got out of the elevator to the fourth-floor gastroenterology service, you saw a high desk manned by receptionists in dark blue jackets—most were very pretty girls in their twenties whose parents probably wished they’d go to grad school. After checking in, you walked into the wide waiting room that looked like a hotel lounge, with leathery couches and coffee tables full of magazines and daily flyers of new Sudoku puzzles.
The amenities aimed to keep anxious families from pestering the staff about what the hell was taking so damn long. On one end of the lounge sat two public computers with Internet access. On the other end stood the room where nurses took patients’ blood before they saw the doctors as well as the hallway to the chemo infusion unit. That side had a pantry stocked with free sour balls, graham crackers, slim cans of apple juice (chilled and room temperature because some chemotherapies made patients oversensitive to cold drinks), tea and a coffee machine. The counter had a cheery cardboard sign from the eleventh-floor gift shop announcing the latest addition to their collection of Livestrong bracelets.
“New!” it chirped. “Purple for Pancreatic!”
Most of the lounge’s widest wall was a huge window; you could see the bustle of Third Avenue below, all the cab drivers, pedestrians and scarf sellers on the corner oblivious to the terrified people watching them from above. There were dozens in the waiting room already, but often you couldn’t tell who had cancer and who was family until you checked whose arm had a bandage from a blood draw. A few wore baseball caps or used a cane. One man kept spitting into pail. There was a striking Japanese woman with a chic black suit and a gorgeous head of glossy black hair. To my surprise she was called in for blood work. She didn’t look sick at all. That was encouraging.
Cell phones rang, newspapers rustled, sick people hacked and coughed.
“Elliot Pinsley!” a receptionist shouted out. It was time to get his blood taken. In a move that would become our tender ritual, repeated countless times, Elliot put down his book, stood up, hoisted his drooping pants by the belt, leaned over and gave me a long, hard kiss on the lips before heading off. I was sending my gladiator into battle.
A chatty older woman seemed touched.
“The men usually come here with wives or girlfriends, but lots of women have to come on their own, or with a paid companion,” she said. “If I were rich, I’d make sure every woman here went home with someone.”
Just watch, I grumbled to myself. I’ll take care of Elliot every step of the way, and then when it’s my turn for chemo, I’ll have to go it alone.
Hours passed before we were finally called in to see Dr. David Kelsen, the overtaxed head of the GI department. He was small and wiry, his sharp sparrow features masking deep compassion. He seemed all business in his long white lab coat, except for one lighthearted habit; after he washed his hands, he
always wadded up the paper towel and tossed it into the garbage can across the room with a flick of the wrist like a basketball star.
After all that rushing to get to the city on time and hours of nerve-wracking anticipation, the consultation was woefully anti-climactic. Dr. Kelsen concurred with the sax man with the pig cufflinks—inoperable pancreatic cancer. Lucky to have a year or two. Conventional therapies were not very effective.
“It’s a very difficult disease,” he said soberly.
We had already booked a week at the beach with the kids later in August. Could we still take the trip?
“Certainly,” he said. “Have a good time, get some rest and relax.”
That was supposed to be the news we wanted to hear, but it sent another message: chemo wasn’t likely to help that much, so there was no real hurry. We shuffled out feeling frazzled, deflated and weary to the core. But we’d only just begun.
We schlepped home on the train. This was the day we’d promised to take Alex to a Mets game for his tenth birthday. We’d given him the tickets back in June and didn’t want to disappoint him. So after a futile attempt at a nap—we were too upset to sleep—we dragged ourselves into the car and fought rush hour traffic to get to Shea Stadium.
It felt surreal to be on the mezzanine on a beautiful summer night, smelling the hot dogs and popcorn and sweat, jumping up to see the best plays, cheering for the team Elliot had loved since he was about Alex’s age. It turned out to be an exciting game.
Please, just win this for my boys, I begged silently. I felt like the mom in one of those cliché TV movies about a sick child whose dying wish is to see his team win the World Series. But this was real.
It happened to be the first time the Mets’ hugely popular catcher, Mike Piazza, was playing again at Shea after switching to another team. When he sauntered onto the field the crowd erupted in deafening chants of “Mike Piazza! Mike Piazza!” They waved and waved and waved.
It felt like the whole stadium was waving goodbye. Goodbye to the good life that we worked so hard to build.
At least the Mets won that night.
WHAT TO SAY
How do you tell your children about this kind of cancer, the kind that can’t be cured? And worse, perhaps, because sunny attempts at spin won’t work, how do you tell a dying man’s mother?
My brain was exploding with questions, each new one crowding out the last. It was easier to debate all the options in my head than to let myself feel anything. Do you tell them one by one so they can ask as much, or as little, as they want? Or do you gather them in a war room so they hear the news together and find some comfort in each other?
How would we manage the logistics anyway? Aaron, a jovial twenty-six-year-old, was in Chicago working as a computer trouble-shooter for a consortium that ran clinical trials for cancer drugs, of all things. There would be no whitewashing the statistics with him. Kate, settled with her boyfriend, Anthony, was selling juggling supplies over the Internet in New York. Max was packing for his freshman year at Ithaca College. Devon was in teen girl heaven at riding camp in Vermont. Alex was home with us, cheerfully bouncing around various baseball day camps.
How much of your fear do you let them see? What if you burst into tears?
My impulse, as usual, was to ask an expert. Defer to authority. Pass the buck for decision-making. There must be a right way to do this, I figured. It was just a matter of research, just like at my job. As if the phrasing or tone would really make a difference in the end.
I was so tense I couldn’t wait until we could return to the city to get advice, so I scheduled a phone session right away for both of us with one of Sloan-Kettering’s social workers, Carol. She was a round-faced, school-marmy woman we’d met briefly during our visit there.
When it was time for the three-way call, I perched tensely on my side of our bed, armed with a blue pen and my red notebook. Acting organized gave me delusions of control. Elliot sat Indian-style on his side, arched over his crossed legs, resting his forehead in one hand, staring at our mustard yellow quilt. We both held phones.
“Major in the truth,” Carol advised us.
“What’s that supposed to mean?” Elliot snapped. “My youngest son is just about to start college. How can he go off with this hanging over his head? My mother lost my father to cancer twenty years ago. How much is she supposed to take?”
It was clear he was taking out his frustration on this sixty-something counselor. Carol absorbed his anger. Guess she was used to it.
“Acknowledge to yourself that this is terrifying,” she continued.
If you don’t tell them soon, she warned, they’ll find out anyway and you’ll lose your credibility. They’ll overhear you talking or see a medical bill in the mail. Tell each one alone because some may want lots of detail, others might not.
“Use age-appropriate language,” she added. “The ten-year-old will keep asking questions until he’s emotionally satisfied with the answers. When he stops asking, stop telling.”
That sounded oddly like conventional guidance for telling children about sex.
“The children who need therapy later on are the ones who are isolated because information was kept from them,” she went on. “Look out for eavesdropping. You want to be their first line of information. You want them to trust you. You don’t have to go into all the scary statistics.”
Elliot sounded testy as he worried aloud about dumping all this dark news on his three kids, who were just branching out into their young adult lives, and mine, who had, after years of two-steps-forward-one-step-back adjustment to living with a stepfather, finally come to feel so close to him.
“This is too much to ask them to handle,” he insisted.
Carol told Elliot it would be wise to “come to terms with your own emotional response” to the diagnosis before telling the kids. He’ll never come to terms with it, I thought. We can’t wait that long.
“You need to be authentic when talking optimistically,” she added. “You can say this is very hard, or this is very sad, and that you’re starting treatment soon and hoping for the best.”
In a few weeks we were supposed to go off on a family vacation to the beach in Cape May. Should we tell them before or after? Didn’t the kids deserve one last lighthearted spree? She warned that our faces would betray us if we tried to keep this a secret. Especially since they knew Elliot had been seeing doctors for a lot of tests and he would be traveling with loads of pain pills.
“You can talk about it and then say let’s take a break from the subject,” she suggested.
What about Max? Elliot couldn’t bear distracting him from what should be one of the most exciting new chapters of his life. And what if the ominous news took a toll on his work at college?
“Tell Max you want him to go off and have a wonderful time,” she said. “You’ll keep him posted if there’s anything he needs know.”
We hung up. Her practiced phrases made sense to me. It felt better to have a script. Elliot bristled. He thought she was patronizing.
For all his bluster, Elliot knew what we had to do. The reporter in him couldn’t keep news to himself for long anyway. He told Aaron by phone, using a comfortable, casual, teddy bear tone totally unlike the hostile way he barked at the social worker. He said he’d be starting chemotherapy soon but didn’t mention the grim outlook.
“Don’t worry, kiddo,” Elliot said. “I feel good, I’m strong and I don’t give up. Your old man’s tougher than you think.”
He told Kate and Max much the same way. They absorbed the news quietly. They had their mother’s stoic Wisconsin reticence. A few nights later, after Kate had dinner at our house, I drove her back to her boyfriend’s apartment. I wanted to say something honest but encouraging. I talked to the windshield as we both stared straight ahead into the dark road ahead.
“This is hard, but Elliot’s doing very well and we’re lucky we live near the best treatment in the world,” I said. “Just be careful about looking things up on the Inte
rnet. The statistics aren’t great but Elliot doesn’t really fit the profile. Most people who get this are older, or have Diabetes, or smoked a lot. He’s young for this disease and he can do a lot better than most.”
“Too late,” she said. “I started checking all over the web and got hysterical. I knew I had to stop.”
“Wise move.”
Telling Alex took all of forty seconds. Elliot and I were lingering at breakfast with him when I plunged in. I’d been thinking back to those books I’d read a few years before about helping kids through divorce; they said children took their emotional cues from their parents, so I tried to sound relaxed and calm. I deserved an Oscar.
“Hey, Sweetie, you know how Elliot hasn’t been feeling well?” I said. “Well, the doctors have done some tests and decided it’s a kind of cancer, and he’s going to start treatment soon.”
“Whoah,” said Alex. “I thought they said before that it wasn’t cancer.”
“Right, but then they did some more tests and they found out that it is. Some days he’ll feel good and some days he probably won’t because of the treatments.”
“Oh,” he said. “Okey dokey.” And then he went off to watch some TV. That was it. For the moment anyway. His questions would come later, after months of percolating inside.
Devon was a different story. She was off at her favorite place in the world, a rambling farm in Vermont where a dozen girls rode horses, mucked out stalls and swam in a sparkling river to wash off their sweat. Once when we visited there was a pair of underwear dangling from a chandelier. Elliot called it “the commune.” Devon adored it and I didn’t want to wreck her final few days there. On our recent phone call she had been sulky, clearly pissed at me for saying Elliot and I couldn’t drive up to get her when camp ended because of our work schedules. On the last day the girls showed off their riding and she wanted us to watch.
Devon’s dad was picking her up instead. Milo considerately asked me what he should say if she wanted to know how Elliot was doing.
