The Bright Hour
Page 5
* * *
Today at the postchemo scan, I’m back on the table. It’s a lot like my dream, dim and goopy, so I tell the radiologist about the tigers.
“Hmmmm—two tigers, huh?” she says. She’s measuring, she’s taking pictures—click clicking on the keyboard. Measuring again. Too many pictures.
“Well, I can’t say I love what I’m seeing,” she eventually says. Something gray like grief.
The tumor is still there. It is not smaller. In fact, it is bigger than they first thought. It seems to reach in a thousand directions. And, on top of that, there is another tumor a few centimeters away that has surfaced from some depth previously unseeable. A second tiger.
“We will need to do some more tests,” she says.
The ground shifts—it just does. I text John in the waiting room and know his footing is shifting, too. Things are stranger than before.
Zilch never really became an ocean dog. He was short, below wave height—a beagle/corgi mix—and lower in the front than the back. But later that same afternoon, for a moment, he did chase a gull right out into the shallows and hardly even looked down.
2. Occult Tumor
The Duke Aesthetic Center, where my breast surgeon’s office is housed, is brand-spanking new and very lovely—tucked back among perfectly perky B-cup-size rolling hills in a shaded medical park with two long-legged parking lots.
So fresh and Truman Show-ish is the whole complex, in fact, it almost seems fortunate that we arrive a little late to my appointment to give the numerous landscapers time to lay out more pine straw. I’m pretty sure a couple boxwoods are hastily planted as we walk down the pathway toward the office.
The waiting room is silent and comfortable. Two other women sit leafing through magazines, but they don’t speak or look up or have their names called, and they look suspiciously like set extras.
Later the surgeon’s nurse will tell me they are “fluff n’ puffs.” Boob jobs. They get seen after the cancer patients.
When the surgeon enters the exam room he says, “You’ve sure thrown us a curveball here, young lady.” The new tumor is malignant, and surgeons love to blame the patient. “Now we’re going to have to do a mastectomy instead of the lumpectomy. Up to you if you want to do a twofer on the mastectomy.”
* * *
Montaigne summons Plato’s belief that doctors should ideally experience all the illnesses they seek to cure: “It is right for them to catch the pox if they want to know how to treat it.” He sounds a little cranky here, but he suffered through a number of kidney stones and I can imagine that might predispose you to crankiness.
I ask the surgeon if he would recommend a double mastectomy if it were his wife—the question you’re always supposed to ask. He hedges.
“We’re all different,” he says. He tells us the tumors are shaped like a dumbbell, with each tumor being one of the weights on either end. And between them—no one’s totally sure but—what looks to be a four-centimeter-long bar of cancerous material. He calls my new lump an occult tumor—hidden on earlier imaging.
It feels as though they might be really into drama over here at the Aesthetic Center.
“I definitely didn’t expect this twist,” he says gravely, but with a little excitement brimming in his voice.
I can’t help but think about a surgeon who one of the chemo nurses once told me about. It was back in the 1970s and early ’80s, when she worked in radiation oncology, and she used to see all the patient files. The doctor recommended a radical mastectomy—a disfiguring procedure where not only is all the breast tissue removed, but so is much of the underlying chest muscle—in 100 percent of his patients.
Although it had been standard practice for decades, the traumatic procedure fell out of favor in the mid-’70s due to improvements in our understanding of the spread of cancer cells. This surgeon, however, kept recommending radical mastectomies until the day his wife got breast cancer.
“Not for her,” said the chemo nurse. “That was when he performed his first simple mastectomy.”
* * *
As John and I leave the building, there are still no cars in the parking lot. And I can’t make out the name of a single other practice in the complex—too dappled is the shade. I feel John’s foot heavy on the pedal as we hurry from the driveway into the pristine cul-de-sac, not totally certain if we are escaping—or complicit in—some new, dark art.
3. Dispatch from the Dark
Speaking of the dark: It’s past midnight, and we’re lying in bed. “I just can’t wait for things to get back to normal,” says John from his side of the moon.
I’m not sure how to respond. I hadn’t realized how attached I have become to the idea that, even in all of this, we are moving ahead somehow, and that dealing with all this is something to value. I feel a sharpness in my throat, the slip of the sureness beneath me.
“I can’t handle you saying that,” I say after a silence, even though I know he isn’t trying to fight. “Thinking that way kind of invalidates my whole life right now. I have to love these days in the same way I love any other. There might not be a ‘normal’ from here on out.”
He’s not happy. I feel the cool bricks of an invisible wall settling into place between us. I turn away to face the window, a heavy orange haze filtering in through the trees. It’s not as dark out as it should be.
“I don’t believe you,” he says. “I don’t think you’re being honest.” It’s the tone I’ve heard him use when I’ve told him I think he’s being a shitty parent. Or that no matter what I’m probably never going to like watching hockey. Anger that morphs from hurt. “I really think you’re in some kind of whacked-out denial right now if you think these days are loveable.”
“These days are days,” I say, calm and furious. “We choose how we hold them. Good night.”
Around 4 a.m. I feel his hand on my back. “I’m so afraid I can’t breathe,” he whispers.
“I know,” I say, scootching a little toward him but still facing away. “So am I.”
* * *
Montaigne: “I learn to mistrust my steps everywhere, and I take care to control them.”
He also believes in lively shouting matches before meals and only “begetting children” before sleep. We are doing it all wrong.
4. Say Please
My kids think I’m obsessed with the word please.
Why is it so important, they whine, what’s the big deal? I make them a list one night. A list they won’t possibly understand for twenty to thirty years, but I am trying to write things down:
Because you will find that the fruit will drop, but rarely into your mouth.
Because the bathroom faucet sticks, and please makes the stronger hand less weary.
Because on summer nights the expectant sky cloaks the trees like a bed sheet, and storm cells spit tornados toward us from deeper south, and the willow oak in the backyard is a monster, and every night we lie down at its feet. Because we never taught you to pray.
Because at night you are thirsty.
Because someday your children, on the other side of your wall, will cackle into the darkness long past their bedtime.
Because right now through the open windows I can hear the newlyweds next door carving out a backyard patio by lamplight, deliberating as they kneel together in their yard, placing flagstones. The stones they hand each other are heavy and oddly shaped. And they must level each one in the dirt—tapping, cajoling, and swaddling the difficult rocks—and then make their way upstairs to bed.
Because the s in please is the sweetest sound, like steam rising after a summer shower, like a baby whispering in his bed.
Because you are human, and it is your nature to ask for more.
Because want, need—those unlit cul-de-sacs—are too perilous unadorned.
5. Mother and Daughter Tour Italy
I opt for a single mastectomy at Dr. Cavanaugh’s urging. Halves the chance of complications, she says. Halving, dividing, splitting, cutting—this
is our new language: cells, statistics, surgeries, household duties, anxiety. But in trying to make less and less, we are always somehow making more.
I struggle the most with the asymmetry of a single mastectomy. It feels more conspicuous—and neither here nor there. I keep picturing a volcano—Vesuvius threatening on the horizon.
* * *
In college I studied abroad in Florence, Italy. I lived in an apartment that was darkened every evening by the shadow of the Duomo and shook each morning with the bells of San Lorenzo. I learned to paint nudes and to appreciate pietàs and frescos. I jumped on the ferry to Elba and standing-room-only trains to Venice and Rome and beyond with just my Walkman and a small leather backpack. I hitchhiked into the Tuscan countryside and careened through the dark streets of Florence with strange boys to buy hash from the North African drug dealers who huddled in the quiet square off the Piazza della Signoria. Age nineteen: I was basically the world’s most worldly person. Oh—and an expert in Chianti and Brunello.
Then, after I’d been living in Italy nearly two months, my mom came to visit.
From almost second one, we fought: my apartment was shockingly messy, my skin was greasy, what are you wearing, why are you upset, oh my God stop looking at the map in public.
We were both devastated by our rift. I’d been counting down the days to her visit for weeks. I’d missed her so badly I ached at night. The highlight of each week had been Sunday calls home—navigating my international calling card on the single payphone in the grungy lobby of my building, savoring and resenting the minutes as they ticked down toward zero.
I was stunned that she did not think I was quite the star of the Italian universe I fancied myself. Also there was this—something we came to understand together much later: her desperately needing to still be my mom, my desperately needing to prove to her how much I didn’t need a mom.
We argued and sniped through the Uffizi, in front of the David, on the Spanish steps, under the baroque fresco in Sant’Ignazio, in a restaurant housed inside a cave in Orvieto, at a Vivaldi concert.
In my midtwenties, I tried to write a poem about the experience: the two of us bickering our way down the ancient, uneven streets of Pompeii with Vesuvius lurking behind us. It’s a weird off-kilter poem, one I’ve never really felt like I have nailed. But years later she told me she wanted me to read it at her funeral.
* * *
See: She is dying.
It is weird to write that—like I’m saying something bad about her behind her back. But it’s true. And no one knows it better than her.
Eight years of cancer. They told her she had five years when she was first diagnosed. New drugs keep coming though, and some of them have worked—for a time. A stem cell transplant. Chemo. She got to see my brother get married and watch my kids grow. Multiple hospitalizations, endless courses of steroids, blood and platelet transfusions, five bone marrow biopsies, daily debilitating nausea and diarrhea, three failed clinical trials. She’s been keeping track: five days of not feeling well to every two where she’s basically okay.
We read Atul Gawande’s Being Mortal together. Its clarity on end-of-life care shakes through me like a summer storm. I give the book to everyone I know. Much of Gawande’s discussion revolves around the decision to stop treatment for cancers that seem to be relentlessly unbackdownable. Many of the stories he tells there—including his own father’s death from a spinal tumor—are hard to read. But what he is working toward in his difficult exploration is unquestionably beautiful: how to distill what matters most to each of us in life in order to navigate our way toward the edge of it in a meaningful and satisfying way.
Unlike the rest of the planet, my mom’s mind isn’t blown. “This is what I’ve been saying all along,” she says. “You just haven’t been ready to listen.”
One of the things Dr. Gawande probes in his book is how to figure out what makes a person’s life worth living in order to make the most sensible choices as the end of life approaches. One man in the book says he is willing to stay alive if he can eat chocolate ice cream and watch football on TV. He will even endure high levels of pain if he can do these things. Others are happy to be alive as long as they don’t have to experience pain. Yet another just wants to do whatever possible to attend a family wedding.
* * *
My mom and I sit on her couch and talk it out. She says for her, it’s about lucidity: she wants to be able to have a conversation, feel a connection. That can help us determine how long we keep pushing blood transfusions and electrolyte replacement to keep her brain as clear-thinking as possible as the myeloma takes over.
She is asked to speak at a pre-triathlon dinner in Washington, DC, for the Leukemia & Lymphoma Society and tells a ballroom of stricken-looking athletes: Sometimes the most important thing is knowing when to quit. Sometimes being heroic is knowing when to say enough is enough. They don’t ask her to come back next year. Maybe they know she won’t be here anymore.
* * *
Her latest news: The current clinical trial she’s on is not working at all. The blood work is all going in the wrong direction. And this week she does say enough is enough. She doesn’t want to do any more treatment.
My mom: my map, my Sistine Chapel, my Lonely Planet, my beautiful ruin, my volcano.
Next week—same day as my mastectomy—she is scheduled to visit Duke to see her oncologist, Dr. Gasparetto, another larger-than-life doctor: nearly six feet tall, tsunami of black hair, stiletto heels, an Italian accent that makes even the most toxic chemotherapies sound like heartbreaking arias—she pronounces the common myeloma drug thalidomide as ta-lidio-MY-da. The plan is to ask her how exactly one goes about dying from multiple myeloma. Whatever she says, it will sound like a song.
And I’ll be five floors above, drifting through the undreaming dreamscape of anesthesia. I keep thinking about my painting teacher in Florence—a watercolor class in a timeless glass ceilinged studio on the Via dell’Alloro.
“You must promise to only follow this advice in watercolor—not in anything else in your life—well, maybe cooking,” she told us. “Intensify slowly. Use lots of water, and lay down a wash of color. Walk away, let the pigment move and bleed and dry on the paper. Then return to it with a slightly deeper hue, again and again until you think you are satisfied. Whatever you do, don’t rush it. The best parts happen when you have stepped away.”
Surgery, anesthesia: a stepping away of sorts. A break from treatment: definitely a stepping away. But leaving treatment: This is something entirely different. She never really told us how to know when the painting was done.
Of course: Only in watercolor she made us promise, a roomful of American girls not yet twenty.
* * *
Thinking about it, Pompeii and cancer actually have a fair amount in common—although we fight far less on this tour. Both places are full of ghosts and surprising, palpable reminders of life interrupted midliving: loaves of bread still in the oven, unfinished art, Vesuvius not quite dormant above the city.
The last couple lines of that failed poem: You reached out to me for balance / even though we weren’t speaking / and a minute later I had to do the same.
6. Pilgrim
Cool spring days, and I head out into the rain from our house down toward the greenway and the park.
Tita and I followed the exact path the other morning. The neighborhood was fierce: blossoms and sunshine and fragrant mulch and my blood coursing with steroids. Our pace was the babble of second opinions, counseling for kids, the possibilities of meditation, single or double mastectomy, disfigurement of the female form and the horror of mirrors, reconstruction: to build again or not.
I was breathless and full and grateful for clear-thinking friendship and conversation.
* * *
Today, I walk it alone. All is changed. In the grass, a brown bunny waits still as a yard ornament. And I notice the world’s littlest mud puddles filling the name “Thomas” carved into the concrete path and a bed of pur
ple lilies taller than children and the creek entirely strange from all the rain. Its strong current beneath the footbridge builds to angry rapids at the wide bend by the storm drain.
In his essay Nature, Emerson says, “Who looks upon a river in a meditative hour, and is not reminded of the flux of all things?” With solitude and a rainstorm: All is changed.
My parents did not bring me up in a church-going tradition. But nature is church, my great-great-great grandfather believed—and I was raised to go into the woods. “[Nature] always speaks of Spirit. It suggests the absolute. It is a perpetual effect. It is a great shadow pointing always to the sun behind us. . . . The happiest man is he who learns from nature the lesson of worship.”
He taught his children to go into the woods for communion—and they taught theirs to do the same, and so on.
* * *
“I actually hate nature,” I once confided to my mom when I was about nine after a buggy week at Audubon camp. I preferred to cozy up with a book or use my stuffed animals to act out scenes from Little Women.
“Ha,” she laughed. “Just don’t ever let anyone from Dad’s side of the family hear you say that. You’ll probably be excommunicated.”
The thing is, Emerson himself probably would have been fine with it. As his son wrote, RWE’s “own attitude in the matter was, that it was only a question for each person where the best church was,—in the solitary wood, the chamber, the talk with the serious friend, or in hearing the preacher.”
To be honest, growing up I didn’t much care for Emerson either. In his portraits he looked bossy and a little stern. I didn’t understand his essays or poems at all, although my teachers often assumed I would when they discovered my heritage. As an aspiring writer, I kept a detailed thought journal and a record of all the books I read, just as I’d been told he did—and I memorized a number of his poems. But I was a faker: I cared way more about what was happening in the Baby-Sitters Club series and what I could do to my bangs with a curling iron.