The Last Kiss

by Leslie Brody

  “Listen, first off, I love you and I love the kids,” Elliot wrote me after a similar dust-up. “One way or another, for all my occasional gruffness, I think you all know that. Or should. Second, among the unspoken issues in our life is the irrefutable reality that so many of the family-life/balance issues are things I went through with my three kids before. It doesn’t make me an expert, but it does make me a tad wearier, going through it again now, at fifty-six, with Devon and Alex, no less as I’m battling cancer and daily fatigue. That doesn’t mean they should be deprived of things that make them happy, things they like to do and should do. But maybe it should mean that you need to understand that my capacity to adjust to their often over-busy schedules and the concomitant late dinners, rushed breakfasts and the general sense that our life is a whirlwind of kid activities, is somewhat diminished…. I’m doing my best to accommodate, but frankly, I need things to be a little less scheduled and hectic, a little easier.”

  “Okay,” I wrote back. “Truce.”

  Time and again I gave in, probably more easily than I should have. But the guy with the cancer always had the trump card. Barring another unexpected catastrophe, my children and I were going to be together for a long time, longer than Elliot would be with us. I hated thinking about that, but it was the bitter truth. There would come a day, unfortunately, when I could do with my children whatever I wanted. For the time being, while Elliot was with us, I would make sure they had what they needed, but real balance would come only over the long haul. I could only hope that my children would learn to emulate my empathy rather than my tendency to submit.

  WHY I BEGAN TO WRITE

  May 2007

  Back in late August, soon after Elliot’s diagnosis, a legendary reporter named Tom Hallman Jr. came to The Record. He’d written The Boy Behind the Mask, a Pulitzer Prize-winning series in The Oregonian about a child who had grown up with horrific facial disfigurement from a life-threatening disease. After years of pitying stares and loneliness, the boy went through a gauntlet of difficult surgeries and finally fought his way back from a coma. It is a miraculous story. Hallman came to talk to the newsroom about the power of narrative non-fiction.

  “Write about what means the most to you,” Hallman told us. “If it matters to you it will resonate with readers.”

  What mattered most to me was my husband’s death sentence, but I was reluctant to write about that. I didn’t want to sound whiny, exhibitionistic or attention-seeking. I didn’t want to seem like I was exploiting a family tragedy to advance my career. And I wasn’t sure how I could write honestly about Elliot’s illness without spilling more details about his prognosis than I wanted our children to know.

  During the lunch break I sat down next to Hallman in the noisy office cafeteria. My mouth was so dry I could barely swallow my ham sandwich. After we chatted for a while I screwed up the courage to tell him what I was considering. After saying he was sorry to hear my news, he encouraged me to write about it.

  “I’m always drawn to stories about choice,” he said.

  “Choice?” I asked, confused. “What choice?”

  “You can join your husband on this emotional journey or you can back away,” he said.

  The voice of that very first social worker echoed in my head, saying “Don’t be afraid to get closer.” That had sounded so daunting at first, and certain to cause me even more heartache when I finally lost the man who made me so happy, but I had come to think of it as the only option. “Backing away” was tantamount to abandonment.

  “I’m just not sure it’s a good idea to expose my family,” I told Hallman.

  When I got home that night, still toying with the notion of proposing a newspaper series on our ordeal, I was disgusted to find myself listening to Elliot in a different way—with an ear searching for workable quotes instead of real connection. I decided right then to ditch the whole idea. I had long been in the habit of saving sweet mementos—even writing down amusing conversations—but taking notes on my husband, observing him for details that would catch a reader’s attention, seemed like a very different project and I was afraid it would come between us. I would be treating Elliot like an object of scrutiny instead of a partner. I felt my cheeks flush hot, as if I’d been tempted to sell my marriage for the sake of a better resume.

  A few days later I got a kind email from Hallman.

  “Even if you don’t ever write about this, keep a journal,” he suggested. “One day you may find a reason to write this story.”

  He was right. Nine months later, the friend who sat next to me at work got her own wallop of terrible news. She had breast cancer. Lindy Washburn is one of the most talented reporters I know. I had spent years applauding as prestigious national awards streamed in for her ambitious, hard-hitting articles on health care. Naturally, soon after she was diagnosed, she told me she wanted to write a series based on her cancer experience.

  I watched as she threaded her way between the grey, messy cubicles to get to the top editor’s glass-walled office. I could see her neat blond head nodding as they discussed it. That got my competitive juices flowing. I sat at my desk feeling dizzy with adrenaline. A freezing tremble took over, the kind I get when I’m really nervous.

  What bothered me was more than envy that Lindy had the balls to go after what I had talked myself out of attempting. I just couldn’t bear to sit there yet again, just a few feet away from her desk, hearing the inevitable accolades and sympathy and marveling over the patient’s side of the story.

  “This is hard for me too!” I wanted to scream. “I know the patient has to go through hideous pain and nausea and fear. But I’m going to be left alone! Devastated! When Elliot’s trial is over, I’m the one who’s going to have to pick up all the pieces and take care of everybody in their anguish. What about me?”

  On top of all that--and with my deepest apologies to Lindy and anyone else who has fought this particular devil-I was so damn sick of hearing about breast cancer. Of course it could be terrifying and excruciating and I knew wonderful women who had died from it. But I envied that most of them had the potential, at least, for optimism. Breast cancer had an eighty-eight percent survival rate five years past diagnosis! Pancreatic cancer’s survival rate was six percent. It’s unseemly to compare cancers like they’re in some kind of competition—and no doubt advocates for diabetes and brain injuries and other killers are jealous of cancer’s domination in the media. Still, I was so tired of pink ribbons and pink cupcakes and breast cancer awareness campaigns. Everybody was aware of breast cancer. Pancreatic cancer was the fourth leading cause of cancer death but got only two percent of the National Cancer Institute’s funding for research because it didn’t have sexy crusaders like Sheryl Crowe or Christina Applegate who lived long enough to fight for it. It didn’t have the primal mommy factor. It wasn’t about tits.

  That’s not exactly what I said when I banged out an email to the top editor. “I’d like to propose a set of complementary stories from the caregiver’s perspective,” I wrote. “It’s a tough battle of a different kind and it’s a relatively untold story that affects a huge swath of our readers.”

  The editor agreed on the spot. Lindy and I would write our stories separately but use the same “Living with Cancer” logo.

  Elliot was a sport, encouraging me as always.

  “Just take out all those adjectives in front of my name,” he said as he looked over a draft sprinkled with adoring modifiers like smart and handsome and brave. “I find them personally embarrassing.”

  I wrote my heart out in those stories, and the truth is that I didn’t do it primarily for readers’ edification. I did it for my own selfish reasons because I was angry and resentful and an approval junkie. I loved my husband desperately, but if I was going to spend countless hours in hospitals, miss many of my son’s baseball games, endure post-chemo crankiness, do all the chores at home and put my life on hold to give Elliot the best possible final days, I wanted to be appreciated for it. He was deeply grat
eful, and showed it, and that was a beautiful thing, but I was insatiable for appreciation on some kind of cosmic level. Writing that series was like venting to a half-million readers. It was like yelling to the universe, CAN YOU BELIEVE THIS IS HAPPENING? To us? To me?

  I smiled and acted stoic on the outside. On the inside I felt ripped off and wrung out. But the person who is not sick is not supposed to complain. This series was my rant, journalism as self-expression. It was fueled, I suppose, by the same furious impulse that drives so many patients and families to blog. For some people, including me, it was impossible to keep these exasperations quiet.

  That series, which ended up with about twenty articles in all, had some unexpected results.

  It resonated with readers far more than I imagined. I got a flood of letters and emails from husbands and wives and grown children with caregiving burdens who said the stories made them feel less alone. I found myself instantly connected to a community of people who understood what I was going through. It was deeply satisfying to see that my stories and Lindy’s did do some good. They steered people to support groups, inspired the launch of local lecture programs, raised money for research, explained the pros and cons of joining clinical trials and urged doctors to be more sensitive about delivering awful news.

  My favorite letter came from a man who said the stories helped him appreciate his wife. “My dear Marianne got me through two bouts of cancer and I never realized how hard it was for her to keep my spirits up until I read your article,” he wrote in spindly script. “Thank you.”

  The biggest surprise came from Max, who was with us during a break from college in Ithaca. I didn’t think he’d read any of the series but he mentioned one installment on how the caregiver’s need for support is often overlooked.

  “It was good,” he said.

  “I’m glad to hear you say that,” I said. “I was afraid you might not like it.”

  “Why? You’re the one doing all the work. We appreciate it.”

  Max mentioned the stories to Elliot as well, saying he didn’t realize the medical stuff had gotten so intense at home while he was away at college.

  “I feel bad about it because I only see you on holidays and weekends,” he said with apologetic concern.

  “He’s turning into a real mensch,” Elliot told me with pride.

  That was something I never dreamed of. That my family would end up communicating more about the most significant issue in our lives because we could read about it in the pages of The Record.

  There was another benefit I hadn’t figured on. Since I wanted more voices from people going through this nightmare, I decided to try a support group. I never would have gone without a professional research purpose egging me on. I was afraid of being brought down by other people’s troubles at a time when I was trying so hard not to sink from the weight of our own. But the possibility I might find some fellow husbands and wives to interview gave me an incentive.

  The caregiver support group met on Tuesday nights a few blocks from my office at the Hackensack branch of Gilda’s Club, the social refuge for people affected by cancer. The international organization was launched by Gene Wilder, the widower of the Saturday Night Live comedienne Gilda Radner, who died of ovarian cancer and said laughter was the best tool for coping.

  I was nervous the first time I walked though those signature red doors on a warm summer evening about a year after Elliot’s diagnosis. I didn’t feel like a self-help type and was afraid these overwhelmed souls would disdain me as a media spy taking advantage of my access. Elliot would never join such a group. He divided cancer patients into two camps; those who wanted to learn as much as they could about their disease and talk about it, and those who would rather do just about anything else. He had clearly dug in among the latter.

  A trained facilitator opened the Gilda’s Club meeting by introducing me. Ten men and women sat in a circle in a small lounge lined with plush couches upholstered with cheery pink, green and beige floral patterns. Most were older than I was, retired and clinging to this group like a lifeline. They looked kindly, sad-eyed and depleted.

  “Hi, my name is Leslie,” I said. “I just want you to know that I’m here as a wife and as a reporter. I’m writing about taking care of my husband for The Record but I promise I won’t use anything you say here unless I get your explicit permission. I hope that’s okay.”

  They nodded and smiled, glad the paper was acknowledging that their experience was an important subject. A few had read my stories.

  That group was nothing like what I expected.

  For one thing, these people were incredibly funny. Gallows humor, for sure. They took enormous satisfaction in having someplace to express aggravations they felt wouldn’t be understood “out there.” They regaled the room with stories, sometimes sidesplitting, sometimes heartbreaking, about sick spouses who were unbearably irritable, selfish relatives who promised to help but didn’t come through, and longtime friends who dropped them like lepers when cancer cropped up.

  It was astonishing to discover the comforting power in a circle of people who fully understood what you were going through because they’d been there too. It certainly helped that these were wise, droll people from interesting backgrounds—a commercial artist, an inner-city teacher and a manager of public opinion polls for New York newsrooms. They were not the types to indulge in self-pity. They came for a break, strategic advice and compassion. Several quoted the proverb about the man who cursed that he had no shoes until he saw a man who had no feet. (For me, that man was a little boy who beamed as he showed off that if he stood on his tippy toes he could push the elevator button at Sloan-Kettering. He had a chemo pump like Elliot’s tucked in his Mickey Mouse backpack.)

  These husbands and wives were devoted but on the brink. Two women had been tempted to flee. One said her husband became so depressed and abusive during years of treatment that her children encouraged her to get a divorce. She toughed it out instead. The other had to quit her job to take care of her husband, who had one horrible complication after another for six years. Then he developed a severe case of “chemo brain,” a version of memory loss that might be a side effect of some drugs. Her husband constantly asked her the same questions, over and over.

  “At times, I’ve told him I’m running away, I can’t bear it any longer,” she admitted. “But I could never do that, as much as I fantasize about it. We’ve been together thirty-five years, and I love him dearly.”

  She brought me back to the words of Tom Hallman, the writer. “You can join your husband on this emotional journey or you can back away…”

  The support group meetings always contained a few eye-poppers. One man told of an impossible neighbor who kept bugging him about cutting the lawn.

  “Does the guy know your wife’s in the hospital?” another man asked.

  “Yes, but he doesn’t care.”

  “Well then tell him he can wipe my ass.”

  “Been there,” said one woman wryly.

  “Done that,” another chimed in.

  Oh Jesus, I thought. These women had to do to that for their husbands? Please let us be spared that indignity. Please. The other women were chuckling. They had gotten used to such things. I was a rookie. I was horrified.

  Despite those ominous allusions, I left those meetings feeling a little lighter. After a few months, though, I dropped out because my favorite participants either moved away, or, sadly, moved on to the bereavement group. Plus, I hated being away from my kids an extra night before chemo trips. Out of tens of thousands of cancer caregivers in northern New Jersey, only a handful attended these support groups, so I wasn’t the only one who felt conflicted.

  Still, the ten veterans in that little room blessed me with better perspective; for everything Elliot and I had gone through, we were having a relatively smooth ride. And we had each other. On good days we were still playing our sloppy but earnest games of tennis, biking around town and holding hands on the tabletop at dinner. It could be a hel
luva lot worse.

  He was being a gladiator. So was I. Hearing how badly some patients treated their spouses—intentionally or not—made me appreciate Elliot’s tenderness all the more, and made me feel even more bound to him with a shared sense of purpose. We wanted to squeeze the most we could out of our time together and help our children feel as close, loved and strong as possible. Our days were complicated but our mission was clear.

  WISPS OF WORRY

  Summer 2007

  I tried to protect my kids during this time and keep a close eye on their moods. If all this illness was getting to be too rough on them, I wanted to know.

  Once I found a clue in the garbage. I noticed my daughter, on a rare spree to clean up her room after the end of seventh grade, had jumped to throw out a short story she’d written for English. She seemed to be hiding something, so I dug the crumpled paper out of the trash, rationalizing that anything was fair in the effort to discern whether she was in some kind of distress. The story was about “the sandwich guy” in the school cafeteria and how he understood her. I read it with trepidation.

  “Maybe he sees me, for just half a second, sitting at my lunch table, and he notices something is bothering me, and no one around me really knows what it is…Maybe he knows that I wish this summer we could go to the Grand Canyon so that when this ends my stepdad, Joe, would have gone there. Maybe he knows why I sit through endless baseball games and just listen to Joe breathing next to me so in ten years I can remember. Maybe he knows why I’ll go sit with the guy when it’s just us in the house, just sit with him in the room and make sure he’s still there and won’t fade away like in the movies, and I can just hold on to his hair (which I hope doesn’t start to fall out soon because that’s what happens in the books, but please I hope it doesn’t because then I would just cry) and know that yes, he’s still here, even though he has a pump in his side, and we have to sit at dinner and wait for him while our food is getting cold so he can give himself shot after shot so that maybe he’ll get better.”