CHAPTER 8
Bad Hair Day
January 2011
I guess this is a new tradition, starting the year holding my breath in a machine. It’s been three months since my last set of CT scans, so I get to kick off 2011 with another. Though Dr. Partridge tells me the two little spots are still detectable on my lung, the news is good. My medical report notes that they’re “unchanged,” and there are “no new nodules.” It feels like an auspicious portent, a new beginning, after a year of such drastic tumult.
We mark the girls’ joint birthday with two kinds of celebration, two kinds of cake, and me having only one small nervous breakdown during the slumber party. The weekend after, we go out to the folks’ house for considerably more sedate festivities. Mom and Dad take us all out for a special lunch at their favorite local restaurant, where Dad is treated like a visiting dignitary by the staff, who haven’t seen him as much lately since the chemo started again. He looks thrilled to be back, like old times.
“I’m doing very well,” he tells our waiter. “Barbara and I are going to Florida soon. It’ll be nice to get away from the cold.” After our meal, he detours us to the bookstore on the way home, where he tells the kids to pick a treat. Lucy agonizes over a stack of potential novels she wants, but Bea has other plans. She is holding a small stuffed unicorn and asking imploringly, “Does it have to be a book?”
“No,” Dad says, laughing. “It doesn’t have to be a book.” It is a good weekend.
Two weeks later, Jeff goes to White Plains again to attend a Saturday afternoon party with his parents, while the girls and I stay behind to catch up on homework and Sunday school. It is not a good weekend.
A few days ago, Dad woke up in the morning saying his feet hurt. He’s developed neuropathy, seemingly overnight. It’s a fairly common side effect of some forms of chemo—a nerve pain that usually occurs in the hands and feet. And it’s serious business—it can make just taking a few steps agony. His feet have also swollen, and on this January day, he has to go to the party in slippers that have been cut open to accommodate his suddenly overinflated condition. A trip across the living room from his chair to the couch takes several minutes and requires both Jeff’s and Jeff’s mother’s assistance. He and Mom have reluctantly and disappointedly canceled their trip to Florida, and his doctors have suspended his chemo.
February 2011
When Jeff goes out again to Westchester for another weekend social event—his minister parents have a lot of friends—Dad seems vastly improved. He’s back on the chemo, and his physical therapist is talking about going for walks outside soon. On Sunday, Jeff goes to church with him, and though Dad walks with a cane, he’s walking nonetheless. He tells the pastor, “I’ll be singing in the choir by Easter.” At the coffee hour afterward he chats with his old friends, including a woman who’s a fellow cancer patient, and they talk about how they both believe in and feel the presence of angels in their lives.
“The old man knows how to rally,” Jeff tells us when he comes home for dinner Sunday night.
Debbie, meanwhile, is now three months past surgery and healing well. There was a valentine in the mailbox last week from her. It was not, as she used to send when we were single, from my imaginary boyfriend, George Glass. It was instead a homemade collage of classic friends from history—Thelma and Louise, Bart and Milhouse, Laverne and Shirley, SpongeBob and Patrick, Charlotte and Wilbur, all the girls from Facts of Life. Inside it read, “I love you, man.”
Over my lunch break, I call her up to check in on her and to oh so casually ask, “How goes the cancer?”
“Not bad,” she replies. “After the hysterectomy, my doctor told me not to have sex or do any sports for a few weeks,” she tells me, laughing, “and I said, ‘No problem, lady.’ ” She started her chemo a few weeks ago. “I look like a Harry Potter villain,” she says. “Tim calls me Voldemom. At first, nothing was happening and I thought maybe I’d get off easy. Then one day in the shower it all kicked in. Now I can yank out fistfuls of hair at a time. It’s great for freaking out the kids. All these years, I was plucking and shaving. Now? Smoother than I ever dreamed.”
“Don’t think of it as losing your hair,” I say. “Think of it as a full-body Brazilian.” Then I deploy an old college game. “Would you rather,” I begin, “lose all your hair all over your body for six months, or lose five centimeters of hair off your head forever?”
“That’s a trick question,” she replies. “Because the answer is: You don’t get to decide.” Ding ding ding, give that lady the prize.
Always stealthily subversive, Debbie has become newly ferocious of late. She’s changed her Facebook profile picture to a lollipop-brandishing image of Kojak. She posts pictures of herself, bald and wearing a tiny, glittery cowboy hat.
She has been talking lately to a therapist, referred by her oncologist as part of her hospital’s cancer care. I’ve known Debbie for more than 20 years, and I have barely ever heard her talk about her feelings. That’s what I like about her. No drama. But I’m hopeful about her exploring this course as part of her treatment. There’s nothing like a life-threatening illness to saddle a person with an abundance of new emotions just screaming to get out.
Her therapist, however, seems like a poor fit. Debbie tells me, “She keeps asking, ‘Why do you come in here smiling? Why are you laughing and making jokes? I’m worried you’re not dealing with this.’ I’m thinking, Bitch, you’re 30 and you don’t have kids. Don’t tell me how I’m supposed to feel. You have no idea how I’m holding it together.”
“Don’t take this the wrong way,” I tell her, “but she sounds like a moron. She can’t handle that you don’t fit the mold of cancer patient she read about in some book.”
“When I first came in,” she says, “she gave me a questionnaire, and all the questions were like, ‘Do you feel hopeless? Do you feel like harming yourself?’ I’m not depressed, I have cancer. Where’s the part on the form about wanting to get better?”
“Seems like your shrink is very disappointed when you’re not all sad and tragic,” I say. “She has no clue. She doesn’t know how much it matters to be able to smile. I’m cleaning my head with a vagina pick. I get head enemas now, Deb. Am I supposed to cry about that?”
“Well,” she replies, “I wouldn’t exactly be happy about it either.”
“I’m just over hearing people without cancer tell those of us who’ve experienced it how we’re supposed to do it,” I say. “Like there’s always got to be a struggle or a fight, and it’s supposed to be courageous. You know what? Bite me.”
“God, I can’t stand the ‘battling’ talk. I’m just trying to live my life. Don’t assume I’m a warrior because I got sick. I’m not suiting up for D-Day,” Debbie says, adding, “It’s the word ‘lost’ that really gets me. Lost a battle. How do you win?”
“I didn’t get that memo,” I reply. “Is it when you make it a year? Five years? Live forever? Do people who get hit by cars lose a battle with traffic? It’s like that Onion headline I love: ‘World Death Rate Holding Steady at 100 Percent.’ ”
Yet when I think about our conversation later that day, I wonder if I shouldn’t be so hard on the language of battle. How else, after all, could I possibly describe what’s going on with my hair? Now that the wound has mostly closed and is less sticky, I don’t need gauze over it anymore, and don’t have to worry about stray hairs getting stuck in my scabs. On the downside, that circle on the top of my head will forevermore be bald, and is for the immediate future underneath a protective layer of A+D ointment. My head resembles a monk’s tonsure and smells like a baby’s ass. I will always have to style it against the natural part, scraping the handle of a comb down my scalp and moving it to the wrong side, to at least partially cover the bald spot. I’m also still not yet allowed to color it—I have to put up with conspicuous roots that make me look like the cover girl for Meth Head Monthly a few more weeks.
I do what I can to cover my scar, so the sun won’t burn
more cancer around the part of my scalp the doctors removed—and also because I don’t want my freakishness to make people uncomfortable. And by people, I mostly mean my own children. I hate that the girls still get squicked when they catch a glimpse of my pate. When a bit of newly formed scalp peeps through when we’re in public, Bea tugs on my arm and whispers, “Mom. Your bald spot,” and then I quickly swoop my hair to the side, like Donald Trump caught in an updraft. I don’t want to embarrass her.
This sick person’s head I now possess represents everything I’ve lost, everything I’ve become. I am a misread name on a chart, a statistic to be beaten or to become. I am a tangled mess of dark roots and gray growth and faded-out Feria by L’Oréal. I don’t want to be this person, any more than Debbie wants to be Voldemom. So maybe there’s redemption to be found in the Rite Aid.
Tonight, the girls and I stand together in the bathroom. We take turns running long, plum-colored temporary streaks through our hair and fiddling with brightly colored flowered barrettes. The girls drag their wands through their locks with enviable carelessness; I cautiously steer clear of my roots around my wound. It’s not just vanity that brings us here to the mirror now. It’s not just play, either. It’s the desire that streak by streak, we can claim back some of the terrain that cancer took away.
CHAPTER 9
Spring Breakdown
March 2011
“Do you want to go to Rocky Mountain National Park today?” Julie asks. “It’s pretty spectacular.” I’ve only ever seen the Rockies from the windows of airplanes, and then only when seated on the more advantageous side of the plane. Yes, please, I would very much like to see the Rockies for the first time, for real, and I’m plenty stoked to have a good friend who invited me to come out so she could show them to me.
Back home, Lucy has a classmate’s long-anticipated sleepover birthday party lined up for this weekend, and Jeff and Bea have planned some special one-on-one father-daughter time. I, meanwhile, am drinking freshly ground, super-dark, rich coffee and eating granola so delicious it might just ruin me, with one of the healthiest people I’ve ever met. We met when we both lived in San Francisco, but she’s a perfect fit for Boulder. Julie is a divorced mom who skis, runs, bikes, eats right, and wears sunscreen. She glows with vibrant energy. But she’s not invulnerable.
More than ten years ago, Julie was diagnosed with a melanoma on her abdomen and had surgery to remove it. “It still sometimes hits me how serious it was,” she says as her cat mewls at imaginary prey at the back door. “I was so young—29. So now I’m on it—anything looks different, I go to the doctor right away.” She gets regular skin checks and takes care of herself. Her only health issue now is that she takes antidepressants and sees a shrink. Diligence isn’t her problem. Insurance is.
After she left her last job, Julie was paying into COBRA and wanted to switch to a plan that would cover her and her kids. Now, because of health care reform requiring that kids be approved for coverage, she tells me that some insurers have stopped writing plans for them. Rather than cover children, they’re basically pretending they don’t exist.
“Insurance is a gamble. If you buy car insurance, they’re gambling that you won’t get in an accident. Health isn’t a gamble,” she says. “Everybody, at some point, gets sick. Everybody has to go to the doctor.”
Like a whole lot of us, Julie has been given plenty of reasons to feel flummoxed and exasperated by the health care system. “I got an MRI last year because of a knee injury and the bill was $800,” she recalls. “My brother-in-law had to have one for a kidney stone when he was traveling in Vietnam, and you know how much it cost? Eight dollars. It was the same exact machine. Why don’t we talk about the drug companies charging exorbitant amounts for pills, saying they have to, when they’re spending millions to lobby before Congress and take out ads on prime-time television?” She has a thoroughly valid point. The Center for Public Integrity says that in 2007 alone, the pharmaceutical industry spent $168 million on lobbying.
“I went to an insurance broker,” Julie continues, “and he steered me to a plan. I had to fill out paperwork on every doctor visit, every prescription, for my kids and me over the last five years. They called me and made me talk through everything, the reasons behind every visit. In the end, they told me they turned us down because I’m on Cymbalta. It’s ridiculous. I’m trying to take care of myself. Would they rather I get gastrointestinal problems or heart disease because of untreated depression?”
“They’ve got to have considered that too,” I say. “Why do you think they wouldn’t cover you?”
“I guess because I’m probably a lifer,” she says. “They start adding up my pills and my psych visits. They look at me and they just see someone who needs maintenance.” Yet I see in her someone who couldn’t have her act more together—conscientious and fit—the type of person least likely to be a drain on the system.
After breakfast, as promised, Julie drives us up steep, winding roads where the snows are melting in the early March sun, but the trees are still bare. The day is flawlessly bright, and the mountains—well, they go on forever. “Pretty breathtaking” is the understatement of the year. When we get out of the car at a particularly awe-inspiring view, Julie has a question for me.
“How are you doing?” she asks. “The altitude starts to get to some people around here.”
“I hadn’t even thought about that,” I say, happily surprised. I’ve never been in the mountains, any mountains, anywhere. How pleasant to discover, at this late stage in my life, a talent—I can take altitude like a champ.
“How are you doing, everything else–wise?” she asks cautiously.
“I’m fine,” I say. It’s been almost six months since my diagnosis. “My head’s all closed up and I can color my hair again. They found a few spots on my lung when I went for my scans last fall, but they could be from anything. I grew up in New Jersey. I was living downwind of the Twin Towers on 9/11. I can’t believe I don’t have the respiratory system of a Welsh coal miner.” Then I stop and think what a contrast my good fortune makes lately. “It’s the men in my life who aren’t doing so well,” I tell her. “Jeff’s dad’s got colon cancer and now, because of the neuropathy, they don’t know how long he can continue the chemo. I think it’s going to be a miracle if he makes it out of this year alive.”
“Does Jeff know that?” she asks.
“I don’t believe he’s entirely ready to,” I say. “Sometimes he’ll say that maybe we won’t all be together for Thanksgiving. Dad’s old, he’s sick, but that’s Jeff’s family. Even with everything that’s happened with Dad and Debbie and with me, it’s still all abstract to him. The only person he’s ever had die was his grandmother, and she was 92.” I, on the other hand, feel more certain that we are in for heartbreaking changes. I just don’t know how soon.
The next morning, Sunday, I am dashing through the Minneapolis—St. Paul airport, trying to make my connecting flight home. As I am shuttling between terminals, I feel a buzz in my pocket that indicates new voice mail. The ID says Jeff—but the voice on the message is Lucy’s.
“Hi, Mommy,” she says. “Can you call us as soon as you can?” My stomach instinctively drops. I move my carry-on bag over to my opposite shoulder as I frantically hit the “return call” button. It rings forever before Jeff picks up.
“Everything is all okay,” he says, and the measured, halting sound of his voice plainly tells me it isn’t. “It looks like Lucy had a reaction to the antibiotics.” A few days ago, she’d been fighting off an ear infection. The pediatrician had prescribed a mild course of penicillin, and she was doing fine. “Yesterday she woke up covered in hives,” he says. “Then last night we were on the way to Abby’s slumber party, and she fainted.”
“She what?” I reply, a little too loudly.
“Well, fortunately, she had her pillow with her, so she landed on that,” he reassures, and I cannot resist smiling at the absurdity of the image. “She said she didn’t feel well, an
d then she just crashed. We took her to the emergency room, and we had to wait around forever, but she’s completely okay. It just shook her up. We didn’t want to call you last night because we got back so late.”
She’s okay, I tell myself. In a few hours I’ll be home. She’s okay. “There’s something else,” Jeff continues. “Dad’s in the hospital. He and Mom went out to dinner Friday, and ever since he’s been throwing up a lot. They thought it best to admit him.”
“Well, with cancer they just need to be careful,” I say. My brain is buzzing. Two hospital trips in the last 12 hours and I’m hundreds of miles away. I’ve never felt so helpless. The funny part is, I’d be just as helpless if I were home. I couldn’t stop Dad or Lucy from getting sick. But I would be there. You’re supposed to be there when it hits the fan.
“Just hang on,” I tell him. “I’ll be home soon.”
On the tarmac, icy flecks begin to flutter down as I pop a Biscoff I squirreled away from the flight into my mouth. This day has already gone totally to hell, so I’m not in the least surprised when, before the last bit of cookie has melted on my tongue, I hear the announcement that my flight—along with the next several after it—has been canceled. By the time I finally do make it back to my own home, it’s the early hours of Monday morning.
A Series of Catastrophes and Miracles Page 8