by Leslie Brody
I had no idea Devon was trying to savor simple moments with her stepfather, and memorize him, just like me.
The next section about the “sandwich guy” recapped the night we were having dinner with Elliot’s mother, and somehow the subject of genetic counseling came up. I started jotting down some notes on Elliot’s relatives but Devon thought my handwriting was atrocious and grabbed the pen out of my hand to do it herself.
“Maybe he knows that I had to make a family tree (for the doctors) of every person in my stepdad’s family who had died of it, that I had to put how old they were and what type of cancer and when they died, and next to his name was just a blank, gaping hole just waiting to be filled, just staring at me like a kid with wide, expectant eyes who wants to know the answer, and I would yell ‘I don’t know!!! How should I know???’ But the ‘kid’ doesn’t look away, because really, I am the kid, and the question tinges all my thoughts like the brown on the roast beef, and it doesn’t go away.”
Damn. I had wondered if that genealogy conversation had been too morbid, but it got going before I could cut it off, and then Devon seemed to want to take charge of the family tree, and I thought maybe it would make her feel good to help. Hushing up the conversation might have been worse, might have suggested things were so dire that we couldn’t even discuss them. Who knows? How can a parent prepare for on-the-spot dilemmas like this?
On the outside the kids seemed fine. They went about their business, did their homework, saw friends and unloaded the dishwasher when prodded. Jonathan Alter, a Newsweek columnist who had lymphoma, wrote that his kids were protected by the “glorious narcissism of adolescence,” and I’d assumed my kids were a bit sheltered that way too. (Devon would later disabuse me of that notion. In her view, Alter was dead wrong. “Kids are a lot more aware than they’re given credit for,” she said. “People always underestimate them. It’s obvious what’s going on.”)
They were watching Elliot closely. They had come to depend on him. When Alex was little he used to dress up in costumes to meet Elliot at the train. He’d be Spiderman, Homer Simpson, a businessman or a clown. The kids loved how Elliot brought them Krispy Kreme donuts for good report cards and the way he moaned in mock exasperation at my chronically silly puns (“Look, there’s picture of a newt in the paper. It’s a newts-paper! You don’t like my puns? So give me pun-icillin!”) They knew he made me happy, and they were worried.
I did some more research into how to talk to children about cancer as the disease progressed. The experts said you should use simple, straightforward language. Kids need repeated reassurance that their needs will be met, they can’t catch cancer like a cold, and it’s not their fault. Even some teenagers blame themselves, assuming their yelling or rebellious behavior drove their parents to collapse.
Children have such keen antennae, experts advised against keeping secrets. Considering all the meds and symptoms and ER visits, I can’t even imagine how that would be logistically possible, but I’d met some parents who tried, like an Orthodox Jewish couple with five young children. Stage IV breast cancer had kept the mom in bed countless days over a year and a half, but she simply said “Mommy has a boo-boo” and God would take care of her.
Most experts agree that kids who aren’t told what’s going on can feel betrayed when the truth eventually comes out. One social worker told me that parents who think their children aren’t aware of a cancer diagnosis in the family should check what they’ve Googled lately. “Sure enough they find ‘leukemia’,” she said. “They are so surprised.”
Some kids feel guilty for resenting a sick relative. Some feel selfish if they have fun with friends during a crisis. Some get depressed watching a parent get weak. Private counseling and support groups give children a safe place to unburden themselves, but my kids wanted none of that.
Many children try to hide their fears from their families because they don’t want to add another burden to the pile. I guess that’s why Devon threw her short story in the trash.
She tried to keep a poem from me too. Her class had been studying Greek odes and she had to devise one of her own. I opened the school literary magazine one spring day and there it was.
ODE TO MY MOTHER’S HAIRBAND
Thank you, my strand of connection
The only thing holding
Chaos together.
Wisps of worry frame her face…
And I see her
About to fall off
But at least you hold some of her together
Keep some strings attached
So we can have her presence
Even if not whole.
Perhaps you are all-knowing
Wise enough
To bend and snap on others
But be gentle on her.
But please
Don’t betray
And break
We all need to pretend
To have some
Control.
What to say about such a poem? Devon saw us teetering on the edge of chaos? She saw “wisps of worry” around my face? I was moved by her empathy (“be gentle on her”) and admired her powers of observation, but I was upset to see she thought our family seemed about to fall apart. I was trying so hard to make our home feel warm and stable and safe. She wanted my “presence even if not whole.” She must have noticed how much of my attention was devoted to Elliot, but didn’t sound bitter about it. That was a comfort.
I tried to talk to Devon about the poem. No go.
“Oh Mom,” she groaned, rolling her eyes. “You weren’t supposed to see that. I didn’t give them permission to publish it.”
Alex was a little more forthcoming. His questions about Elliot’s cancer practically followed the script from the cancer books.
One night when I was stirring spaghetti sauce for dinner, about six months after Elliot got sick, Alex brought up the subject. We’d talked about a few of these issues before, but he seemed to want reassurance.
“Does Elliot have a mild kind of cancer or a serious one?” Alex asked.
“It’s a tough one, but he’s strong and determined and has very good doctors.”
“Is it like the kind of cancer in the lung cancer commercial that can kill you?”
“It can, but I certainly hope it won’t.”
“How do you get it?”
We’re not really sure, I explained, but sometimes it can be inherited, like blond hair.
“Can I get it then?”
“Well, we’re a family but you and Elliot aren’t related by blood.”
“So it’s not contagious?”
“No.”
It wasn’t easy to stay composed during conversations like this. Luckily, Alex’s next question, “Where is a pancreas, anyway?” led us to an anatomy book where far more interesting body parts brought some comic relief.
I was glad to know he felt comfortable asking these questions. He ended up writing about Elliot’s illness too.
“I think my family’s life would be much easier if this never happened,” Alex wrote in a fifth-grade essay. “He’s in a bad mood lots of times because of chemotherapy, so after chemo it’s really stressful.”
That’s for sure.
I didn’t talk that much about the whole cancer business with Max, who was busy in college, and Aaron, working in Chicago. They didn’t see the day-to-day ups and downs that my kids did. Kate, working in New York, had a clearer view because she came over a lot to have dinner or watch a ball game. She understood that visiting was the best medicine she could give.
All the kids wanted to do the right thing, and we didn’t have to prod one bit to get them all to join us for a weeklong vacation in the Outer Banks. Aaron had never come on a summer trip with us before. Elliot looked so happy strolling along the ocean beach, seeing his whole group together. His kids saw the bump of his port under his collarbone for the first time. Aaron called him “Cyborg” after a comic book hero who had superhuman strength thanks to his mechanical implants.
&n
bsp; “If something happens to Elliot, will we still see the Pinsleys?” Devon asked me one day.
“I certainly hope so,” I replied. “They’re our family.”
DUMB THINGS PEOPLE SAY
Before I rail against the people who said truly bone-headed things about Elliot’s illness, let me stop to thank the friends and neighbors who did everything right.
The good guys came out in remarkable force, bearing books, DVDs for diversion in the chemo clinic and even keys to a country house in Rhode Island (not to mention the stealthy deliveries of weed). Our friend Pam would sometimes show up at our door at 9:00 p.m. with a hot apple cobbler right out of the oven. Neighbors we didn’t know very well kept coming by with homemade lasagna and roast chicken. My book club gave me gift cards for massages. Colleagues at work devised a weekly rotation to bring us dinners. That lasted almost six months, until Elliot was told to avoid fat and could no longer dig into their rich casseroles and cream pies. Alex was sorry to see the chocolate ones go.
Such warmth was stunning—especially to someone who grew up in New York apartment buildings where neighbors rarely knew each others’ names. It was an enormous source of comfort to see how many truly caring people wanted to help us. It gave me deeper respect for the best of humankind.
At the same time, however, there were a few incidents of such crude insensitivity they made my jaw drop. It’s understandable that people often don’t know what to say or feel awkward in the company of someone with a serious illness, and I cringe to think of all the times I’ve blurted out something dumb. Some of the comments we heard, however, were hurtful and quite avoidable. I was trying hard to be careful about everyone’s feelings inside my house and I didn’t want some outsider mucking everything up.
Once at a school event a fellow parent came up to me and demanded, “So, how bad is it?” This man was a surgeon. He seemed to want to show that he was in the know, a master of the gory details. I hoped he left such cavalier pessimism behind when he talked to his own patients.
Another time, a long-lost friend of Elliot’s swooped in out of the blue like a vulture, drawn to the juicy drama. After a few minutes on the phone catching up, my husband asked how he was doing.
“Well, at least I’ve got my health,” the guy said with a dark laugh. Very funny.
Please don’t get me wrong—reconnecting with old friends with sincere good will was one of the few benefits of this ordeal. It was the callers motivated by lurid curiosity who were galling. Carole Radziwill, in her memoir about her husband’s illness, called them “tragedy whores.”
Here’s another favorite from a Christmas party. I had vowed to take a break from the medical mess. Knowing some people would ask how Elliot was doing, I had my line ready: “We’re hanging in there, thanks for asking, and we’re taking a vacation from the subject tonight.” Period. Polite and firm.
Usually that worked. One nervy woman, however, refused to take the hint.
“Okay,” she whispered to me conspiratorially. “But what’s the one-sentence bottom line?”
What, you want a D-date? She never cared much about us when everyone was fine. Guess the gossip potential was irresistible.
One night Elliot and I bumped into a neighbor when both our families were picking out Christmas trees. It was supposed to be a Kodak moment.
“Hey, did you hear about Rob’s father?” the neighbor said, alluding to another man on our block. “He had pancreatic cancer and lasted only two months so you’re ahead of the game!”
Seriously? I didn’t want to blow up in front of all the kids so I simply said Merry Christmas and walked away. But a few minutes later, when I saw the guy pull into his driveway, I marched up to his car.
“Can I talk to you a second please?” I asked, grabbing his arm to drag him out to the street so his little girls couldn’t hear me sputter. “How could you possibly think that was a helpful thing to say?”
“I’m sorry,” he said looking sheepishly at the pavement. “I’m famous for putting my feet in my mouth.”
“Yeah, well, be more careful.”
He was so embarrassed afterwards that he avoided Elliot altogether. The two of them used to share their train commute to the city and chat daily on the platform. The man simply disappeared from the 8:57.
I got so fed up with these ugly incidents I wrote an essay for The Record about what not to say, and what to do, when a family you care about faces a severe illness. It must have hit a nerve; it drew emails from as far as Israel. One reader, Cynthia, wrote me about the hellish days when her seven-year-old daughter was dying. Her husband vowed to open a guard booth in the lobby of Sloan-Kettering. He would bar entry to anyone who said “you can always have more children” or “when God closes a door, he opens a window.”
Here is the gist of my humble advice about how to avoid such painful gaffes.
1. Just forge ahead with kindness. A young mother widowed on 9/11 told me it was great when people urged her to call if they needed anything, but it was even better when they took it upon themselves to offer to drive her kids to school or drop off poster board for the fourth-grade geography project. That spared her the discomfort of asking.
2. Be specific in what you propose. If you live near the clinic your friend is using, offer a room for a nap or an overnight stay after a treatment.
3. Stay connected. Patients often say people stop calling after the initial flurry of attention. Invite them to join you in the simple pleasures of normal life, like going to a movie or watching a ball game.
4. If you can’t think of something to say, try the old standby’s like, “How ‘bout them Mets?” Someone who is sick is not looking for a heavy conversation at every encounter and doesn’t want to be defined only by his illness.
5. Resist the temptation to tell the patient’s family about your brother-in-law or old college roommate who also has cancer, unless it’s truly pertinent and useful. When everybody starts flooding you with cancer sagas, you end up drowning in sad stories.
6. Think twice before telling people to be positive. Dr. Jimmie C. Holland, the psycho-oncologist, railed against the “tyranny of positive thinking.” When friends tell patients they should be optimistic, they imply that those who get sicker didn’t try hard enough to stay upbeat or conquer the disease. That’s unfair, and families should feel free to express anxiety and dark thoughts without being judged.
7. When words fail, just listen.
ESCAPE
October 2007
“There’s a 6:00 p.m. flight to Paris,” Elliot called from work to announce one September day. “Let’s go.”
We had barely unpacked from our family vacation in the Outer Banks. In the usual course of things we would wait a while to blow money on another big expedition. We were in journalism, after all, not banking. Our life was comfortable but frugal. I drove a car with 180,000 miles on it and never changed the ugly faux-pebble linoleum floor in our kitchen. Elliot resoled his work shoes instead of buying new ones. A hefty chunk of his paycheck went to his kids’ college tuitions.
Some people assumed I was a trust fund baby. They were wrong. My parents were enormously generous in covering my children’s educations but they would never support me. My father was a self-made man who believed handing grown children too much money “de-incentivized” them.
Elliot and I watched a tight budget and rationed out our trips. Until he got sick. Then we craved diversions. I didn’t want to look back someday and regret denying him one of his few requests, an escape to his favorite city in the world. And who knew if I’d ever have another crack at a romantic getaway to Paris? There is a sense of urgency that comes with terminal illness, a what-the-hell impulsivity. My inner grasshopper stomped on my inner ant.
And so we booked a flight right after the next round of chemo.
On a crisp October afternoon we found ourselves having a late lunch by a window at Le Grand Colbert, a bistro near the Louvre, savoring one extravagant dish after another while the rest of the world
was working. Elliot ignored some of his dietary restrictions and let himself have a glass of red wine, a rare indulgence since starting treatment fourteen months before. Perhaps it was the magic of Paris that he suffered no bad effects.
Every day of our week there Elliot put on a tweedy blue-gray jacket over a button-down shirt, the only time in our marriage he ever dressed up by choice, or for several days in a row. Now he wanted to treat this city, this art and this trip together with respect. There was, of course, the unspoken sense that it might be our last.
Elliot didn’t have a long “bucket list” or any elaborate stunts in mind. Most of all, he simply wanted to be with our family and friends as much as possible. Beyond that, he talked about two other grand wishes. At some point, he wanted to take Aaron to Rome, because he’d taken Max a few years before, and he wanted to take Kate to Turkey. He loved leafing through travel books, typing up detailed itineraries and fantasizing about these adventures. We called it vacation foreplay.
Elliot had compiled such a guide for our trip. At the risk of sounding like a Philistine, I will confess that I wasn’t crazy about his beloved museums and churches. They felt stuffy and claustrophobic. Nature stirs me more. But I wanted Elliot to do exactly what he wanted and figured I’d have the rest of my life, alas, to pick where to go. He took us to see one Madonna after another. Their wooden faces looked so stiff, so rigid, so blank—not at all how I’d look if I were grieving over my dead son. But then we saw one particular version of the Pieta. It wasn’t the famous one by Michelangelo. I couldn’t name the artist. I know only that it was impossible not to be moved as Mary looked down at the skeletal man lying limp in her arms, her face twisted in pure anguish. That will be me, I thought, my eyes stinging. And that will be Elliot.
