by Leslie Brody
“I’d like to tell her myself if possible,” I said, “but I don’t want you to lie, so if you have to explain, go ahead.”
Within minutes of getting into her father’s car, Devon asked about Elliot. She wept through much of the six-hour drive home. As soon as they arrived, she bolted out of the car with a streaky red face, ran up our steps and threw her arms around my waist.
“I’m so sorry I gave you such a hard time about not coming to get me,” she sobbed into my chest. “I didn’t know Elliot was so sick. I feel so awful.”
As wrenching as it was to see my child so devastated, I was touched. The intensity of her reaction was poignant proof of how much she had grown to love him. When she hugged Elliot long and tight, he was deeply moved. The other kids had been so much more reserved.
Elliot dreaded telling his mother. With a fluffy head of striking white hair, and fiercely proud to have all her own teeth in her eighties, Helen was a formidable whirlwind of energy, a self-appointed volunteer social worker who ran errands for her frail neighbors, buying them stamps, refilling their prescriptions, escorting them to doctors’ appointments. She called them her “clients.” All her serpentine sagas about her busy days led to points that were only tangentially related, and each account was punctuated by a repertoire of favorite phrases. “By the way.” “I’ll be honest with you.” “As a matter of fact.” “P.S” “I’m not like that.” “I love her to death.”
Helen was one-hundred-percent feistiness in sensible heels.
Elliot knew his diagnosis would crush her. He wouldn’t tell her until we’d been back to Sloan-Kettering and had a battle plan in place so he could explain the treatment in the same breath as the illness.
The two of us went to see her for lunch. She was sitting straight-backed in a wicker armchair in her spotless one-bedroom apartment in Washington Heights when Elliot finally told her what was going on. Her long, angular face barely moved. She sat still as a stone. It was like she buckled on a metal coat of armor.
“I’m very upset,” she said in a robotic monotone I’d never heard. “You know I’ve been through this before.”
And as for me? I don’t think I fully absorbed all this for months. I just tried to do what I had to do, one day a time, to keep us all going. I thought back on my days living near Mt. Fuji, where a Japanese friend worked grueling hours as a teacher, ran an immaculate household and raised three young children with little help. “Motherhood makes you strong,” she used to say.
I was afraid to look far into the future. It was easier to focus on what to cook for dinner, when to schedule the next doctor’s appointment, how to make sure we all had some fun together, and where Elliot and I could go for some invaluable time alone. I tried to cling to my own propaganda for the kids, that he was young and strong and didn’t fit the profile of the grim statistics, but I didn’t always fall for it. I had to be especially careful when I was in the car by myself. Any sad song on the radio could unhinge me. All the lyrics about loss and heartbreak—and that includes just about every song—seemed to be about us.
The Beatles’ In My Life was a killer. “Out of all these friends and lovers, there is no one compared to you….”
A mournful ballad from the musical Rent unglued me too. “The earth turns, the sun burns, but I die without you…”
I had to turn off the music, wipe my tears and pull myself together. Crashing the car or losing my license was exactly what we didn’t need.
Sometimes I could keep the darkest thoughts at bay.
Sometimes I couldn’t, and would feel overwhelmed by a shadow of loneliness to come.
Sometimes I even tried to imagine what it would feel like to lose my husband, as if enduring the emptiness in advance would vaccinate me against the day it actually came. Then I would force myself to stop such self-flagellation.
He’s here now, I told myself. You’ll have plenty of time to mourn him later. Get as close to him as you can, while you can.
One such moment hit a few nights after Elliot’s diagnosis. We were at Taro, a casual but elegant French-Asian fusion restaurant where you could eat outside on the sidewalk at bistro tables with candles and tiny vases of pink flowers. We were tired but relaxed after a packed day of tennis, a picnic in Central Park and a softball game back home with a group of Montclair writers. It seemed like Elliot was trying to jam a lifetime into the two weeks before chemo started.
We sat quietly, holding hands on the tabletop, glad to be so at ease that we could sit together without talking much. I couldn’t help eavesdropping on the thirty-something pair at the next table. They were clearly on a first date, all awkward jokes and forced laughter. He was bald and nebbishy with black-rimmed glasses and smooth baby cheeks. She looked tense and bony, nervously flicking the end of her tight ponytail. He tried to engage her with tales about his nutritionist; she professed awe at his ability to resist chocolate; and each kept asking the other about how their date was going so far. After going round and round about what to order, they ended up with the safest bet, mango chicken.
It was excruciating to witness.
How awful it is to be them, I thought, so lonely and single and desperate for connection. How much better it is to be us.
Please please please don’t let me end up back where they are, I begged some invisible power I wished I could believe in. I finally have the man I want. It’s way too soon to lose him.
Let us enjoy this time together. We are here now. Let us just be.
THE THINGS I CARRIED
I had a thick spiral notebook with a tough red plastic jacket. I called it my cancer bible. The inside covers were taped full of business cards from Elliot’s growing team of doctors. Keeping scrupulous records gave me a purpose, a sense that I was helping and the thin illusion of influence. The first fifty or so pages showed my hasty but meticulous notes on Elliot’s symptoms, doctors’ visits and drugs’ side effects. When he started daily chemo pills plus weekly infusions in the city, with one week off every month, I scribbled down all the information, even the nurse’s tip about a cheap garage.
All that detail came from the very start of our ordeal. As time went on, I just used the red book as a folder and shoved dozens of accumulating handouts into the back—advice on what to feed a patient who can no longer digest fat, a “pain management instruction sheet,” and so on.
There was also a pale orange card about “Sexuality, Fertility and Intimacy” during treatment. We didn’t need that one. Elliot had plenty of passion for what we referred to as “marital activities,” using the phrase of a shy doctor who had granted us permission to “resume” them after Elliot healed from an invasive procedure.
“Shall we resume some marital activities?” one of us would whisper with a mischievous touch and a grin. Elliot said such pleasures were the best distraction from his daily discomforts and fears and phone hassles over prescriptions. They made him feel alive. Our bed was the one place he could come close to feeling carefree again. I tried to be a nurse by day and a vixen by night, and his lavish attentions made me feel safe and treasured. I have few regrets about how we managed during his illness but this is one; sometimes I was just too exhausted. If only I could have those nights back. What I would give for that chance.
My cancer bible also held artifacts from the parallel track of normal family life—a calendar for concerts at the Cloisters, a random to-do list (“plumber, birthday present, take Devon to riding on Friday”), and phone numbers I needed for work.
People often imagine that if they get hit by a terminal diagnosis they’d quit their jobs and fly to Tahiti. That’s not usually the case. Like many patients, Elliot had to keep working for the paycheck and health insurance. More than that, work gave him a sense of identity and purpose. He didn’t want to sit on the sidelines, he wanted to contribute. Quitting would mean admitting he didn’t have much time left. Ironic, how the work he once grumbled about became so precious. Our jobs became lifelines. Our offices gave us diversions, time with friends and news
to talk about that had nothing to do with doctors. Work preserved, as much as possible, some of the most basic rhythms of ordinary life. It was a blessing that our employers were flexible about our schedules, and that Elliot had an editing job he could do from home when need be.
For some reason, perhaps the satisfaction of private vengeance, my red bible also had a page I ripped out of a waiting room magazine. The article was titled “How Cancer Made a Mother Out of Me.” The author veered from self-pity to celebration as she beat breast cancer and gloated about the wonderful lessons learned; I resented her weepy tale of triumph, knowing that Elliot almost certainly wouldn’t be a winner.
One particularly in-your-face quotation caught my eye. It was in her doctor’s riff about doing a breast cancer walk-a-thon. “‘They couldn’t have a pancreatic cancer walk,’ he said. ‘Almost no one survives pancreatic cancer.’”
My reaction screamed across the author’s smiling head shot.
“BITCH!” I had scrawled in block letters over her bright green eyes, her shiny coral lipstick, her careful blond highlights. “FUCK YOU!”
That’s how I vented my fury. On secret pieces of paper stashed in special hiding places. I didn’t want anyone to see how hopeless I really felt. I had always told Elliot everything, but this I couldn’t share. I was afraid if he saw my despair, he would give up. I wanted him to fight as hard as he could.
I needed him.
Every day brought new reminders. Once I drove to baseball camp to pick up Alex. As he opened the car door and buckled his seat belt, he seemed to be choking back tears.
“What’s wrong, Honey?”
“Nothing.”
“Are you sure?”
He was silent as we drove home. A few hours later, Alex spoke up.
“When they were picking teams, I got picked fifteenth out of eighteen.”
“Oh, Honey, I’m so sorry.” I couldn’t think of anything else to say. I’m not a sports person. It seemed there was no way to spin this so it wouldn’t hurt quite so much. This was a big part of a little boy’s world, and I felt totally inept. It killed me to see Alex so despondent.
“Don’t worry about it kiddo,” Elliot said when he heard about it later. “It happens to everybody at some point. Mike Piazza got picked last in the sixty-second round of the 1988 amateur draft. More than a thousand guys got picked before him and he got drafted only as a favor because his dad knew somebody.”
Alex’s face lit up. Of course Elliot knew exactly what to say.
How was I going to raise my son without him?
LAST KISSES
October 2006
How many times can you kiss your husband for the last time?
How many times can you bear the crushing weight of thinking this might really be the end?
And let me ask you this: If you’re kissing him, but he’s too drugged to know it, or unconscious, does it count as a final kiss?
Elliot had one high-tech procedure after another—stents and drains and filters placed deep inside—and every time they wheeled him away for sedation I wondered if this moment would be our last. Doctors called these procedures “minimally invasive” but there was always a risk of complications, and each new step seemed like more of a medical high-wire act than the one before. And Elliot, who hated being alone, had to go into those sterile, shiny operating rooms without me. Our fervent goodbye kisses, with desperate see-you-when-you-wake-up smiles, depleted me. Each one had to be memorable enough to last a lifetime, just in case.
As soon as the heavy operating room doors swung shut behind his gurney and I had to turn away, my chin would quiver, my eyes would well up and I would head off in a shaky daze to cry, or call his mother who was no doubt staring at her phone, or page through a magazine about clothes I’d never wear or food I’d never cook, or I’d walk downstairs to the clattering grey cafeteria that smelled like old beef broth to get some breakfast, even though my mouth would be sandpaper dry and I could barely swallow.
Our first last kiss came in October, two months after Elliot’s diagnosis.
We weren’t yet resigned to the reality that we had to act on every clue from his embattled body. He’d gotten oddly short of breath during a walk in the woods, but Aaron was visiting for the weekend, and Devon had a horseshow on Sunday, and Elliot didn’t want to miss the fun.
But Monday morning he woke up with serious chest pains. When we called the doctor said get to the nearest ER. I rushed us to a hospital in Teaneck that I gambled would take us quickly. It turned out there were blood clots in Elliot’s lungs. He was whisked straight to the Intensive Care Unit
Hour after hour ticked by. Elliot had more trouble breathing, and the pain got worse. An IV dripped morphine into one arm and he drifted in and out of fitful sleep. An oxygen mask over his nose made his face sweat. I paced. Night fell. His breathing grew more labored, his head lolled from side to side. A young black-haired doctor kept coming in, his brow furrowed. It looked like this was more than a rookie could handle. I didn’t really trust him but had little choice. Elliot was clearly suffering but the doctor worried that more morphine would depress his breathing too much.
“Mr. Pinsley,” the doctor said, peering into Elliot’s faraway, unfocused eyes. “Mr. Pinsley, how are you feeling? Mr. Pinsley. Can you hear me?”
He didn’t respond to little slaps on his cheek. The doctor turned to me.
“One option is to intubate him to help him breathe. That would let his body rest.”
Are you kidding me? I thought. It’s this dire already? We just started…
“Is that like a ventilator?” I asked.
“Yes.”
“But if you put him on a ventilator, will he get off? Is it temporary?”
“That’s hard to say.”
“What’s the percentage? What percent of people who are put on a respirator are taken off?”
“It depends. Let me call his cardiologist for a consult.”
The doctor left the room. It was two in the morning. The sky was black through the window. I saw my reflection in the glass, alone, holding a blanket tight around my shivering shoulders. I was terrified and kicking myself. I should have taken him to New York. This wouldn’t be happening at Sloan-Kettering. They’d know what to do.
The young doctor came back, saying the cardiologist agreed he should intubate, if I agreed.
But how was I supposed to know what to do? When you talk about a living will over coffee in the lawyer’s office, it’s simply not the same. The papers we signed in there, back when everything seemed clear cut, didn’t seem relevant. We had parsed out the opaque language—no heroic measures if there was no chance for recovery to a meaningful life—but this doctor didn’t know if Elliot would ever get off the machine once he got on. He couldn’t predict what kind of life Elliot might wake up to, if he woke up. All I knew was that once you get hooked up, it’s agonizing for a family to unhook you.
I’d thought about this a lot. Years earlier I had visited the parents of Karen Ann Quinlan for an interview about the landmark court decision that let Karen die, finally, after she lingered for years on machines in an irreversible coma. I always swore if I ever ended up in that hopeless condition I’d want to be taken off life support. In fact, I’d deliberately neglected to update my health care proxy, leaving my first husband in charge. Elliot wouldn’t pull the plug on me.
Clearly, you don’t want to get on a breathing machine unless it’s absolutely necessary, and this doctor didn’t have enough information for such a critical decision. It was 2:30 a.m. All this seemed so hasty and haphazard.
But how could I do nothing? Elliot was a fighter. He’d want the chance to try to beat his way back. And if he couldn’t wake up, if I would be forced to decide for him that an unthinking, unfeeling, unchanging life was not worth living, then that would be my burden.
“Okay,” I told the doctor tentatively. “Do it, I guess.”
I leaned over and kissed Elliot’s hot forehead so many times. Then I lifted of
f the mask, for just a minute, please, and kissed his mouth. Then his forehead again. It was slick and salty. What if this kiss is our last, or this one? He wouldn’t even know we had it. Just one more, please. Then I forced myself to pull away, afraid to take too long, and willed my feet to walk into the quiet corridor. I didn’t want to see what the doctor was about to do.
My body crumpled into a grey plastic chair by the nurses’ station. I collapsed into sobs so fierce I couldn’t breathe. My heart pounded so fast and my chest heaved so hard my ribs ached.
“Are you okay?” a nurse asked.
No words could come out. It felt like I was drowning, like the time I fell into the violence of the rapids on a rafting trip in Idaho. I’d lost my balance in a little yellow rubber kayak and got sucked under freezing water, water that was hurtling between rocks and whirlpools and crashing foam. The guide had said never put your feet down, they’ll get stuck and anchor you to the ground and the water will rush over you and flatten you and drown you even if it’s just a few inches deep. So I tried to curl up with my knees and hold my breath as the current trapped me under the kayak, my life jacket forcing me up into its bottom. Then the river spat me out, dragged me under again and yanked me around until I didn’t know which way was up. If I panic now I will die. Desperate to breathe, almost faint, I couldn’t last another second when a strong arm grabbed me and swooped my head and shoulders onto the front of his kayak. I gulped in air with deep groans. Suddenly we were someplace calm. My legs dangled limp.
Now a nurse grabbed me under the armpits and pulled me into the empty family lounge and sat me down on a soft couch. Her arm was around my shoulder, she said it would be okay, don’t worry, try to breathe. But what if this was it, so soon, how would I tell his mother, how would I tell the kids? I couldn’t believe I was already a hysterical wife, about to be a widow.
The door to the lounge burst open. Another nurse rushed in.