Archive for November, 2010

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My Unglamorous Life

November 20, 2010

Leo the Zebra

One o’clock in the afternoon found me sobbing on my back on the bathroom floor. My stoma (the small intestine that protrudes through my belly) had prolapsed and a good 5 inches of fat, beefy red intestine rested on my stomach. I had known that something was wrong before I removed the bag. I told myself: “Be prepared. Don’t be afraid. It’s just your body.” But knowing and seeing are different stories. The moment my intestine unraveled, I did too.

I talked myself into calming down long enough to watch with odd fascination as my intestine shimmied back and forth in a snake dance of peristalsis, and then I quickly resumed crying.

The stoma didn’t cause any pain, so why was I so upset? I’ll tell you why. Your intestines are supposed to be inside your body, that’s why, and to see so much viscera falling out of a hole in one’s abdomen is not a pretty sight. I called my surgeon’s office and was placed on hold for nearly 30 minutes while they tried to track down an ostomy nurse. In the meantime, wet, naked, and shivering from the shower, I held my intestine against my body while I juggled the phone in the other hand and somehow managed to pull on warm clothes.

The ostomy nurse finally came on the line. She was so sweet and reassuring. Clearly, she’s seen and heard it all before. Her instructions were to lie down for a while and just wait for the intestine to recede back into place. This meant that I had total permission to lie on the bed with a hot cup of tea and watch hours of mindless TV. David was already on his way home from work (I very well couldn’t show up at Toby’s preschool holding my small intestine) and would take the kids to a playground after he did the pick ups.

It was quiet. No kids. No computer. Nothing to DO but wait. I flipped on the TV to the Bravo channel–I’m a closet reality TV competition lover–and tuned in to The Rachel Zoe Project. If you don’t know the show, Rachel Zoe is a Hollywood stylist and this is her reality TV program, which basically chronicles the stressful life of making stars glamorous. I’ve watched the show a few times, and in each episode the poor woman looks emaciated, totally stressed out, and ready to collapse in exhaustion (or from lack of calories).

Today’s show was no exception. Rachel Zoe had her hands full dressing her clients for the Emmys. As usual, crises were averted (a hotel mistakenly gave a $100,000 gown awaiting Zoe’s courier to the wrong messenger and then it actually dared to rain in L.A. on the day of the awards show) and the stars looked sparkly and beautiful as always. I was totally captivated watching this woman work. It took my mind off the situation at hand, which, remember, was the slow coaxing of my intestine back into its rabbit hole.

So there Rachel was, frantically flapping around her studio trying to find the perfect shoes to go with the perfect dress to go with the perfect diamonds to create the perfect image, and here I was, with 5 inches of intestine propped up by cold, wet baby wipes. I wondered, if Rachel Zoe could look through the TV set into my “reality show” what might she think? It’s bad enough that I’m normally in grungy Old Navy drawstring velour pants and spit-up stained fleece tops which I wear for days at a time, but this moment kind of took the cake. If she could see me in my natural habitat with intestine waving in the wind, she’d probably scream in horror and run away as fast as she could on her 5-inch heels. I don’t think I would blame her. I would run, too, only it’s kind of difficult to run away from yourself, or so I am learning again and again during these last months.

A young, upbeat, funny and irreverent woman with a rare and incurable cancer made a documentary called “Crazy Sexy Cancer” following her explorations into the world of alternative treatments. The hip, cowboy-boot wearing Kris Carr had decided that “cancer needed a makeover and that she was just the gal to do it.” Since the successful release of her film, Carr has come out with companion books, a popular web site, has toured the talk show circuits endlessly and charges a hefty $275 fee for 1 hour consultations. I applaud her efforts to take control of her disease and in the process to help other young men, and especially women, to feel less isolated, ugly, unwanted, and depressed by cancer.

It also intimidates me. I read her Crazy Sexy Cancer Tips from middle to beginning to end. Some of her suggestions were new to me, and truly helpful. There were also plenty of laughs. But the image of crazy sexy cancer is so far from my reality that it’s kind of hard to relate to the “go to the spa” tip or “get sexy lingerie” tip (though even my ostomy nurse has suggested several times that I visit Fredrick’s of Hollywood for “naughty underwear”…I’ll save that for another post at another time).

If I were to publish my own version of a cancer book, it would be more like Crazy Cancer since there isn’t a whole lot of sexy in my life at the moment. Most days, I’m covered in spit up and drool. Leo once spit up into my bowl of morning supplements and I had to wash off each pill as I took it. Yum. And if it isn’t baby slime, then it’s toddler grime. Toby has a fondness for wiping his nose on my clothes, his food-caked hands on the walls, and his diapers stink to high heaven because he adamantly refuses to use the toilet, even though he’s 3.5 years old. And if it isn’t the kids’ gross bodily fluids, it’s my own. (Just mopped up another huge poop explosion today, which involved cutting off my underwear while sitting in the passenger seat of our car in the middle of the city.)

This isn’t hip New Yorkster or celebrity L.A. cancer, this is mommy exhausted and trying to make it through each day remembering where I put the keys cancer.

So if Bravo wants to make a reality TV show of my life, and I don’t think the ratings would be very good, I might suggest calling it “My Unglamorous Life.” It’s definitely got more reality going for it than I can sometimes handle. But it’s my life, and it’s all I’ve got. Cancer treatment. Two small children. A bone-tired husband. A circle of amazing friends. And I’m so deeply grateful for all of it.

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Breathing Lessons

November 11, 2010

Looking through old poems, I found this one, which I wrote the year following my mother’s death. It’s strange to be on the other side now, the side of the patient, and read this. I find I constantly step back and forth over that line of the one with the illness and the one who helps the ill to get well. As I walk the path of my own healing I can’t help but reflect on my parents’ experiences with cancer. Somehow it’s all braided together. I feel them on the other shore watching me, loving me, quietly cheering me on.

BREATHING LESSONS

I wanted to be her

when I was a child

sitting under bright kitchen lights

squinting behind her tinted eyeglasses,

my ears heavy with her gold hoops.

I perched on a stool,

proclaiming her name as mine

to all the partygoers—

for the laughter it ignited,

because she was my world.

* * *

Last night I dreamed the disease

entered my body.

My head alabaster smooth,

I’ve become the face in the moon,

pasted in space and no ladder.

How will I get home, Mother?

How will we climb down?

* * *

In the hospital bathroom

I pat her body with the towel—

feather-light strokes,

her skin suddenly rice paper.

I dry her arms, back,

whisper as I travel her legs.

And then we’re standing

in the metal-framed mirror—

one woman in a wool sweater,

the other naked.

I wrap the towel around

my mother’s wet head

until every strand is hidden,

nudge her to the mirror.

“Look how beautiful you are,”

I tell her, “see how pretty you’ll be

even without hair.”

* * *

He hates illness. His eyes tear up

at the scent of disease.

But my father puts on

the yellow robe, gloves,

the mask he’ll remove

as soon as the nurses look away.

And then he’s bounding through the door

with his arms full of mail, the Sunday paper,

whistling hello to my mother

as though he’s just come home from work,

famished, asking what’s for dinner.

* * *

It came out first in the comb,

then the shower,

on the kitchen floor.

It scattered like dandelion spores

on her pillow.

She went to the hairdresser,

told him to take it all off,

she’d be damned if she’d let it fall.

* * *

She can’t get warm, buried

under every blanket in the room,

her teeth chattering staccato hits

like the sewing machine

ticking along the red and white

polka-dotted cloth

of the matching dresses

she made us try on, take off.

My sister blasts the heat,

though she’s perspiring,

stripping off her shirt.

Outside it’s summer,

the Philadelphia sidewalk blooming

with sundresses and tropical plants.

“It’s okay, mama,” my sister

strokes her head, “we’ll get you warm.”

She would take the cold

into her own bones

to stop that trembling,

so she does the only thing she can

and lies on top of my mother,

her body an offering of fire.

* * *

In the forest unknown

no sunlight, no rain,

no path, no breeze, only trees

and spidery branches,

we hunkered there for nine months

like little birds in a nest,

feeding, preening, restless,

at some point we entered

another wood, where we lost track

of a future, each day measured

by the number of clear breaths,

the ability to move from bed to chair,

we learned to count body-time,

the multiplying and death of cells,

we learned to play good memories

over and over like popular songs,

we learned slowly the language

to converse with the natives,

and when we did speak,

we learned there’d always be

more questions than we knew to ask.

For instance, to take someone off life support,

did you know you must first put them on?

In the end, the invincible man

who arrived early thirty-seven years ago

for a blind date, the man my mother

eloped with to escape a slow life,

the hero of her story broke down

and wept when he told the doctor

not to use heroic measures,

so when she reached for him

across the bed rail, what

could he do

but open his trembling hand.

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Seeing Pink

November 3, 2010

Everywhere I turn these days I see pink. Pink ribbons. Cute pink gel pens at the Staples check-out counter. Pink ribbon rhinestone necklaces at the hospital gift shop. Pink sneakers. Pink ribbon bumper stickers. I recently picked up a free, local parenting newspaper. Guess what’s on the cover? Yep, more pink ribbons.

A small voice inside me began to whine: Where’s my ribbon? Where’s my rectal cancer pen? Then I opened the newspaper and read. Duh. October was breast cancer awareness month and the parenting magazine had run a heartfelt feature on mothers with breast cancer. Of course, their stories are inspiring and moving, and I felt an instant kinship with my breast cancer sister-mothers, despite the “divide” of different diagnoses.

Honestly, it’s embarrassing to say “rectal.” I know I should be more mature, but as a person with a photographic imagination, referencing the rectum—my rectum—just makes me a tad self-conscious. The higher organs of the digestive system seem to have far nobler-sounding names and functions. Esophagus. Stomach. Pancreas. Colon. Ileum. Even the appendix, that tacked-on little organ that has gone long misunderstood (as a storehouse of good gut bacteria it does serve a purpose after all!) is more musical to my ear than rectum.

When the issue of my health comes up, and lately it does fairly often, I usually tell people that I was diagnosed with cancer on my 39th birthday and am in cancer treatment. I would leave it at that, but curiosity always prompts the question: “What kind of cancer?” Why does it matter? I guess if I said the dreaded melanoma or other cancers that are difficult to cure then my interlocutor would be able to gauge just how much trouble I’m in. Everyone’s a cancer expert these days. So my face twists into a sort of apology and I whisper: “Rectal.” The usual reaction I get goes like this: “Oh.”

Hmmm.

The truth is, now that I have only a little bit of rectum left inside my body, I’m coming to a whole new level of respect and appreciation for this workhorse of a muscle. I like its no-nonsense practical purpose: the rectum stores poop and when the time comes it pushes it out. In a nutshell, it’s the garbage collector. Not a glamorous job, but somebody has to do it.

When I scored reasonably well on my first standardized tests in the third grade, my father sat me down for a heart to heart. We were early for my acting class in the city, so we went to the diner across the street and ordered our second breakfast of the morning. After pouring cream into his coffee, my father looked at me intently and said: “You did pretty well on your tests. You know, you can be anything you want, a doctor, a lawyer…” He took a sip. “You don’t have to be a garbage collector.”

The moment he said those words, a wave of relief flooded my body, as though I were suddenly sprung from a life of toil I didn’t realize I was sentenced to until that moment. “I don’t have to be a garbage collector,” I repeated in my mind while visualizing myself hanging onto the back of a dirty, noisy truck. I will never forget that exchange. It was rare to receive advice from my father. He certainly had strong, highly critical opinions about my sisters’ and my life choices but he rarely offered fatherly guidance of the “you don’t have to be a garbage collector” sort. The classism of his remark aside, I think my father was trying to say: “You’re smart. Do something with your life.”

And now I find myself slightly obsessed with trash collection, admiring its vital function in society…and in our bodies. Isn’t it true that you take trash for granted until it’s piled up and smelly and something has gone wrong with the collection system? (Until you get cancer and have a temporary ileostomy?) When I studied in Madrid in ’92 there were strikes all the time, including a strike of the garbage collectors in the subways, and I can tell you that it was hot and putrid underground without those mighty trash men in their cute regulation blue jumpsuits.

When we first met my surgeon, he impressed us with his straight-shooting talk. He’s the kind of guy who will tell it like it is without the sickening sugary coating. He’s the kind of man who makes jokes about his line of work (you can imagine). He’s also the type of surgeon who doesn’t have an outrageous ego. “I’m basically a plumber,” he said with a big grin.

Although he’s a colorectal board-certified surgeon who came to me highly recommended, and while he’s performed hundreds of laparoscopic TMEs (my complicated surgical procedure) and teaches this technique all over the country, the fact that he called himself a plumber, well, it gave me pause. It actually gave me cold feet. I couldn’t imagine a heart surgeon referring to himself in such pedestrian terms. I wanted a dignified, noble, long-fingered, delicately mannered surgeon to open me up and handle my intestines. So I signed up with one (he wore a suit and tie) but two days before my surgery I canceled. I realized that I had gotten seduced by a necktie, and that in fact if I was going to have my insides re-replumbed I wanted it done by a plumber.

Before the surgery, my plumber checked me out with a flexiscope—a lighted narrow tube that gets inserted through the anus into the rectum. He turned the monitor on and there I was onscreen for all to see: David, baby Leo, and my dear friend Sara (and good sport) had front row seats. I felt a mixture of emotions: embarrassment, self-consciousness, anxiety about the tumor that sat crouched like a toad on the upper wall of my rectum. And then I took a better look, a more objective look, at a part of my body that had hitherto remained cloaked in darkness. When I could get over the weirdness at watching something we really have no business seeing, I marveled at the complicated and beautiful thing that was the human body. My rectum was many shades of pink, and illuminated and magnified on the screen above me, I could see all of its shimmering textures and alien geography.

It reminded me of a story my mentor, the poet Olga Broumas, once told me about teaching Women’s Studies classes in the 70s. Things were a bit more radical and experimental then, and in one class a woman volunteered to allow the students to look inside her vagina with the aid of a speculum. One by one, the students shone a flashlight inside the woman’s vagina and peered in—body just like their own body—and gasped. They had expected the inside of a woman’s body to be dark, dirty, ugly. Instead, they were shocked to discover that her insides—their insides—were pink.

Hot pink. Coral pink. Blushing bride pink. Earth just waking up to a new day pink. Light-filled and holy pink. This is my body and I love each and every part of it pink. Rectal pink. Amen pink.

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