Leslie, Alex, Devon, Elliot and Max hiking in the Adirondacks, Summer 2008.
Radiation didn’t do much good, and Elliot’s second pair of chemotherapies had stopped working. We talked about an out-of-date drug used by a woman I’d interviewed for the newspaper series who claimed to have accomplished the extraordinary feat of living fourteen years after a diagnosis of inoperable pancreatic cancer.
“It’s like that scene in When Harry Met Sally,” Elliot said. “I’ll have what she’s having.”
He could joke but he was losing his capacity to protect himself through denial. The tumor near his pelvis hurt like a knife slicing down his thigh. He needed increasingly high-powered meds to get comfortable. We spent hours one day in the waiting room of the pain management clinic. I have never seen such a miserable bunch. There was a woman with a chunk missing from her jaw, a man doubled-over in agony in his wheelchair. I thought they should start an anti-smoking version of those “Scared Straight” programs, which used to take juvenile delinquents to prisons to show them how wretched their lives would be if they kept up with their drugs, gangs and crime. Of course I don’t know if smoking had anything to do with these patients’ conditions, but if I ever caught my kids with cigarettes, I’d bring them straight to this clinic for a preview of what might happen. Elliot couldn’t help leaving that place depressed.
He’d seen a Sloan-Kettering psychiatrist a few times since getting sick but didn’t want to go anymore. He didn’t like the way counseling stirred up dark visions about the realities ahead. When he put off making appointments, I was disappointed. It was a daunting responsibility for me to be the only vessel for his deepest anxieties.
Elliot was more open about his despair in his writing than he admitted out loud.
“I’ve lost the ability to believe there’s a good reason to be hopeful,” he emailed me one day in May.
“What makes me so sad,” he wrote in June, “is that there was so much I wanted to do with you, so many places I wanted us to see together. I wanted to see my kids happy with what they were doing in life.”
“I looked in the mirror and now more than ever I look like a guy with cancer,” he wrote another day. It embarrassed him to look that way at the office. “I can’t stand it. And my pants are falling off me. I have to walk around with my hands in my pockets to hold them up. I’m eating everything I can but can’t seem to make a dent.”
On the outside he tried to act like things were going well. He even lobbied for, and got, a plum new assignment at Bloomberg. It was a dream job for him, editing stories about arts and culture. It had a key side benefit—a much slower pace than legal news and an editor who encouraged him to work from home as much as he needed, which was becoming all the time. He polished up colorful stories about theatre directors, art shows, wine auctions and European spas. He even edited a piece declaring that the hot new trend in men’s pants was the “drop-crotch.”
“Who knew,” I teased, “that you would be so fashionable?”
We tried, sometimes, to make light of things but it was difficult for me to look at him naked. His ribs showed like an Auschwitz prisoner’s. His upper arms had lost much of their muscle. They were actually thinner than mine. His thighs were so skinny that his white briefs drooped loosely around them like badly pinned diapers.
“Don’t mourn him now,” I told myself, again and again. “You’ll have plenty of time for that later.”
My pep talks to myself cycled on a relentless loop. Just a hundred years ago a man was lucky to live to be forty-five, so compared to most of human history he’s ahead of the game. At least he’s not a soldier dying on a battlefield without morphine. At least he’s not seven years old. At least we have insurance. At least I have a flexible part-time job so I can take care of him. At least we found each other. So many people go through their lives without a love like this.
I got sick of my own cajoling voice in my head. A therapist once told me I was afraid of anger. I think I was also afraid of grief—that if I gave in to it I would crumble. I would be sucked into a bottomless pit and would never come back out. So I steeled myself with smiles and tried to focus on what we still had. I didn’t want to look back on these days and kick myself for wasting them in sorrow. These were the good days. I had to appreciate them because I knew it would get so much worse.
“Don’t be afraid to get closer,” the social worker had said. “He’s here now.”
Maybe bottling up my distress served a good purpose. I didn’t, after all, fall apart. I kept our house and family running like a finely calibrated machine.
My main goal was to squeeze in as many fun times with our children as possible. We had booked rooms for all seven of us, plus Kate’s boyfriend, at the Hedges in the Adirondacks, a rustic cluster of cabins surrounding Blue Mountain Lake. Getting away always made us feel better. In June we piled into a rented minivan that would fit all of us along with board games, Frisbees, baseball gloves, books and piles of pills. Somehow Elliot managed to hike up two mountains in the drizzling rain, stopping every minute or so to catch his breath. Going so slowly we found pleasures in the path that we might otherwise have missed—tiny red lizards, hummingbirds and mushrooms in wildly phallic shapes. The lake was too cold for swimming, but we kayaked, read in rocking chairs on the porch and had campfires in the dark. There’s a picture of Alex and Max laughing as they wrestle on a worn plaid couch in our cabin. It was the first time I’d seen them tussle like puppies. Like brothers.
One day Elliot and Alex bought some cheap fishing poles, caught some big ones and threw them back. One time it took so long to pull the hook out of a trout’s mouth that we thought we killed it so we took it to the kitchen to cook for dinner. Soon after the fish hit the ice bucket it started twitching and sprang back to life. Wouldn’t that be nice, I thought. A second chance…
“I wish we were still up in Blue Mountain Lake, just you and me,” Elliot emailed me a few days after we got back. “I’ll bet we could get the Colonel’s room for a few days, say Sunday thru Wednesday. I just want to spend the day in bed. Happy Anniversary.”
It was our eighth. Where had the time gone?
One night back home in July I found Elliot in our room in his underwear, dancing to the thrum of the air conditioner.
“Are you doing that to amuse me or because you’re moved by the music?” I asked.
“Both,” he said with a grin. It was funny but gave me a chill. He was loopy from all the pain medicines, Fentanyl and Lyrica on top of everything else.
He felt isolated working at home so he kept trying to schlep into the office, but commuting was getting harder. “I have to navigate the trains, the streets, on new, more powerful meds,” he wrote. “I feel more than a little disoriented and my reaction time feels slow. Believe me, I’m not challenging cars to cross the street…I’m just woozy, and woozy is not the best armor for surviving in New York.”
He sounded so wistful sometimes. “I’m looking at the picture I took of you in Maine…that summer we rented the house near Popham Beach. You look so fetching. I can’t concentrate on anything else…”
How I loved those emails. I was addicted to their ardor. I hated to envision a time I would have to get by without them. Stop it, I told myself. Don’t go there.
We had a trip for two planned on the way to picking up Alex from camp in New Hampshire in August. We stopped for a few days at our favorite bed and breakfast, the Old Inn on the Green in New Marlborough, Massachusetts. We took long walks, long baths and long naps. We visited our friend Linda’s country house nearby. She and her fiancé had an orchard and we picked a perfect peach. It was so beautiful we couldn’t bear to eat it. For days we just admired it on the mantel by our bed at the inn. I splurged on a forty-five dollar set of colored pencils just so I could sketch that lovely piece of fruit. I spent hours on its portrait while Elliot slept. Looking carefully at the peach’s delicate round shape, with its soft oranges, pinks and greens, was so calming that I felt time slow down. My breath got softer. It was almost like meditation. I felt a rare sense of peace in that room, with my husband resting and my whole body relaxed.
It struck me that the day marked the two-year anniversary of Elliot’s diagnosis. His doctors had predicted that by this time he probably wouldn’t be with us anymore. But he was still here with me, and we were happy.
I’m proud of my drawing that day, it came out well. And once it was finished, we bit into that idyllic peach. It was the sweetest, juiciest one I had ever tasted. It dribbled down our chins and we licked away its nectar with the purest kind of contentment. We live for moments like this.
The next day we spent a glorious sunny afternoon biking around Lake Winnapesaukee, fantasizing about the houses we would buy someday. Who would think a man in Elliot’s condition could do that? Maybe we could carry on like this for a long while, I thought, ricocheting between emergency rooms and romantic adventures. Maybe we had much more time than the doctors ever thought.
On good days we were determined to be cheerful. Sometimes Max and Kate brought over their Lhasa Apso, Mookie, to keep Elliot company when he was working from home. Alex was tickled to come into the kitchen one day to find Elliot dancing around with Mookie in his arms, singing old show tunes.
When we were exhausted, though, despair could creep its way in.
“I’m so tired,” Elliot wrote from his office in late August. “I just felt like I was going to collapse…and I hate limping around here at work. I feel so conspicuous. I hate it.”
“I love you,” I wrote back. That was all I could think of to say. I refused to lie or spout false optimism. Anything fake would feel like a wall between us.
“I can’t keep limping around here. I won’t do that. I feel like I have a sign around my neck that says cancer patient.”
The pain specialist kept upping the doses. They made Elliot so drowsy that he started to fall asleep as soon as we started kissing at night. Elliot was crushed but determined to fix the problem. It affected the core of his sense of self as a man. I loved that he still cared so passionately about this kind of connection, and it amazed me that it took so long for his mountains of drugs to get in the way. He soldiered on, unwavering in his mission to find opportunities to please. He refused to give up life’s greatest rewards.
“I’m feeling a bit lightheaded, edgy, but the methadone seems to have blunted the pain substantially, so how can I complain?” he emailed me one day. “Only problem is that… ‘other problem,’ which I’m confident we can overcome with time and patience. Because as powerful as these meds are, my love for you is stronger by far. I think you knew that…”
One day Elliot forgot his jacket on the train, fell down the station stairs and almost stepped into the gap between the subway and the platform. It was clear he was getting too spacey for the commute. I kept suggesting that if he didn’t like to work at home, we should find a carpool or hire a taxi. It turned out Bloomberg would pay for one, but he didn’t want to be treated like an invalid. His obstinacy was an asset in fighting this disease but it could also keep him from accepting practical solutions.
Elliot clung to the shards of denial as much as he could. I couldn’t afford to. As much as I wanted to stay in the present, and appreciate every minute of our time together, I had to think ahead too. I was the one who made sure we updated our wills and health care proxies. I was the one who had to calculate whether I could stay in our house with my kids on just my income. I was the one who Googled articles on helping kids cope with bereavement because I’d be the one left behind to deal with their devastation. I was the one who might need to initiate getting help from hospice; he would never make that move. It would signal giving up. I thought about doing some research on local hospices just in case, maybe even writing a newspaper article about them as a way to check out a few places, but that seemed sneaky. If I went scouting out deathbeds behind Elliot’s back, and he found out about it, he would be shattered.
“Hope for the best,” my doctor told me at a checkup, “but prepare for the worst.”
When Elliot’s third pair of chemo drugs failed to help, he agreed to try an experimental one. Until now he was reluctant to be a “guinea pig” but had no real options left. He was scheduled to start a trial of a pill called Brevanib in mid-September.
“How many more ways can I show/tell you I love you?” he slugged an email in early September. “I’m drifting off again. But you’re all I think about lately. Well, you and that pill I’ll be taking in a week or so. But I try not to think about that, so more/most of my thoughts are amorous ones about you. We should hop a plane to Paris, book a week at the Agora Saint Germain, line up in the morning at Eric Kayser’s boulangerie, and while away the afternoons at the Luxembourg Gardens or the Grand Palais, leave time for a nap (definitely!) then dinner at Les Pipos. I see the Louvre, the Musee d’Orsay and the Picasso Museum are collaborating on a massive Picasso show that runs from October till February of next year. He’s not my favorite, but in small doses, and certain periods, I do enjoy.”
Elliot had always reveled in his vivid fantasy life. At least he still had that.