Friday, October 31, 2008

Sneaking Sally Through the Alley

We spend the late afternoon getting ready. Luke, our make up artist, transforms Dominick into a zombie just pulled from his earthly grave. We get fake blood all over the bathroom sink. It's fun, this mad scramble of creation and magic, a touch of the theatrical. We've been reading Hamlet, learning about Shakespeare, researching Elizabethan England, drooling over the beautiful British countryside and stately manor homes, and imagining ourselves in the Globe Theatre. Our recent foray into PBS's wonderful series In Search of Shakespeare has only whetted our appetite to refashion ourselves...even if just for one night. The last line of stitches drawn, the last bit of blood oozed into place, and we're ready. Ready to brave the spirits, greet the evening's mischief, lose ourselves in the pitch black of the night. But first, some photos. It's hard to see the bloody tire tracks running up the front of Dominick's Road-Kill Zombie Child costume, but they're there, and I should know, since I ran over the red paint-glue-gravel splattered outfit several times in the driveway with my car. A lone tire, still smeared with red, still bears witness to the horrible accident, which soaked blood into the driveway, coloring stones and sand a scarlet reminder of the fun we had.

Where does one go trick or treating when you live in the rural countryside? Not in our neighborhood, where the houses seem spaced miles apart, and the absence of sidewalks or any kind of safe shoulder on the road make the thought of going trick or treating in our neighborhood completely laughable, ludicrous, dangerous, even. We head to the Mount Hermon campus of NMH, where a festive gathering at the Head's House starts things off right. Through the luminarias and into the dusk we stroll along the upper edges of this recently restructured, re-routed campus made more beautiful by the evening skies settling in, casting shades of pinks and oranges atop trees and across the swaths of playing fields that ripple throughout the levels of life here. We walk in hordes, clusters, twos and threes, all happily running in packs from house to house, through short cuts in the woods, crunching through leaves, brushing shoulders, clinking candy buckets. I run with the kids, and have to remind myself on several occasions that I am not one of them. A haunted house at the dining hall brings the spooks out, and the food captures the playful creativity of the night: meatloaf disguised as rats, watermelon brains, bloody fingers. Yum.
We head over to our old neighborhood in Northfield, where area ruralites go for safer, sidewalk Trick or Treating. It's packed. Costumed throngs of all ages sweep through the leaf litter in a ceaseless tide of feet, swoosh, swoosh, crunch, crunch, swoosh. Houses have been decorated full tilt, with headstones, jack-o-lanterns, spooks and skeletons coming to life, timely shrieks and fully-formed screams, scary music, and orange glow lights. The musky stench of a fog machine fills the air; up ahead, a breath of fog covers the ground and a cluster of tiny costumed toddlers holler and proclaim their fear, "That house is scary. We're not going in there! No way!" After rushing onto one porch to dance in a strobe light (and being rewarded with candy, I might add), I have to keep reminding myself that I am not there to trick or treat; several times I forget myself and roar up the walkways to the houses with the kids, before stopping and hanging back like a good, respectable parent. It must be the Sally costume; she's filled me with her playful, restless spirit, not a bad thing, really. I quite like it. All too soon, we reach the end of the street, where a solitary house sits surrounded by neighbors who have furtively cloaked their non-participation in utter darkness. The sky lights up for a brief second, a shooting star, my second this week, appearing overhead. Perhaps the tides are changing. Dominick and his friend Oliver race to the door, and are greeted by a three-year old girl in her pajamas, holding out a bowl of candy, telling them "Happy Hawoween." Dom and Oli look around and listen for any signs of an adult, but only see two stockinged feet on the end of a couch, the unmistakable sounds of snoring drifting in from the next room.
We return home after walking what must have been ten miles. We've seen friends and neighbors and felt the warmth of familiar faces, but the cold has settled into our bones; a hot bath and a bowl of soup will feel good. After scrubbing the fake blood and face paint off Dominick's face, and washing the head injury out of his hair, a touch of black remains under his eyes, the look of eyeliner that makes him writhe in agony, "I look like a girl!! Aaahhh!!" A few deft strokes with the q-tip and it's gone: it's just stage make-up, I tell him, boys wear it too. I'm feeling awfully comfortable in my Sally costume. I just might wear it to bed...
...but first, I have to light my Samhain fire outside in the fire pit, offer my post-surgical binder compression bra to the gods, say my wishes, and bring in some protective fire to relight our own hearth fire. In lieu of animal skins and heads, I keep Sally on a little longer as I head outside to commune with the spirits. As soon as the fire reaches a good pitch, I toss the bra on top, and it catches quickly, spewing a noxious, thick smoke into the air. What do they make those things out of?! I watch, mesmerized as layer by flammable layer, all the little annoying frilly edges that made me turn red and scratch and burn, the pink flowery fabric that was somehow designed to make us feel more feminine, more pretty, the velcro that bound so tightly it was hard to breathe, burn down to an unrecognizable lump within minutes. Good night Bra. Farewell Cancer; I'm moving on. I look to the starry skies. May the Spirit of Misfortune grace us with better luck this year. I grab a fire stick and bring it inside to light the small pile of kindling I've assembled in the wood stove. After some breathy blowing, it roars, slowly illuminating the dark house with its warming, central light, sending sparkling embers and evil spirits to push past the cold and ride the airflow up and out of the long black pipe. I hang up my Sally dress, and scrub her off my face, but she'll be a part of me forever, living on in my new Sally-styled girl, in my heart, in my restless spirit. Tonight, I sleep well.

Happy Halloween!

As seems to have become the usual pattern in recent years, the week brought gusty winds and just enough rain to strip and let fly any remaining leaves off the trees, rendered bare and spindly and macabre just in time for Halloween. The bitter cold that blasted through this week lingers in the frost of the morning, and yet later today, this last day before November arrives to sink its gritty teeth into what's left of the Indian Summer harvest, the sun will sufficiently rise to warm the skies, keep the frost at bay, and cast a much welcome glow about things tonight, leaving the trick or treaters to canvas the neighborhoods without having to bury their costumes under layers of ridiculous jackets and scarves.

There's much about the over-commercialization of Halloween and other holidays that I loathe, and frankly, after doing it up for fourteen years, I must admit that I've been struggling in recent years to find the energy to bring up the Halloween (or Easter, or...) box, get the decorations out, carve the pumpkins (color the eggs, trim the tree...), and piece together the costumes (hide the eggs, fill the stockings...). I suppose that amidst the blitz of candy greed and cheap plastic costumes that have sucked all opportunities for creative joy out of the process, Halloween has quite very nearly and clearly lost its meaning, though what meaning it ever held for me I would be hard pressed to remember: getting as much candy as possible? winning the costume contest? egging the house of that boy you have a crush on?

And yet, there's still something about Halloween that I love--losing myself in the creation of a costume, filling the house with the smell of roasting pumpkin seeds, heading out on a balmy October night, stars overhead, the excitment and promise of the haunt of the evening before us. The glory years of Halloween are behind us, those years when the kids were little and we had oodles of time to spend thinking up and working on costumes; now, it seems, the busy-ness of our colliding schedules leaves little room for such frivolity, and yet, I miss it. It's another indication that we outgrow the phases of our lives, spiral back into the swirling energy of memories, and try to recapture some of the magic that used to be.
I have happy memories of Halloweens past, when I'd spend hours working with the boys on their costumes--clowns, Oompa Loompas, Harry Potter, and then the usual crop of scary monsters and super freaks, but it's been a long time since I've whipped up a costume for myself. But this year was to be different. I woke up this morning and felt this crazy desire to put one together. And not just any costume. No, it had to be Sally. I started identifying with Sally, the Tim Burton character from his wonderful flick A Nightmare Before Christmas, after my first surgery, when I gingerly removed the bandages after my surgical biopsy/lumpectomy to find that my left girl had been pummeled, the stuffing plucked out, the skin stitched up. It was to be only the first of several such life-saving, loving mutilations and reconstructions. My reconstructed girl is covered with stitches and scars and a sculptural nipple to boot, and in Sally, with her Dr. Finkelstein-created, stitch and scar-covered body, her restlessness, and longing to leave the confines of her tower room in the search for something better in her life, I found a kindred spirit. To be certain, underneath her patchwork dress is a girl or two like mine. But Sally, of course, is an expert at needlework, unlike me (this is something I happily rely on Dr. Pitts for.) When she decides to flee her overprotective creator, she must fling herself out of the high tower window, fall to the ground below, and retrieve her limbs that have, of course, torn off and tumbled away. She carries her needle and thread with her at all times, and restitches herself together with admirable speed and skill. Ah, if escape were only that easy.
With Dominick's help, I've made myself a Sally costume. We literally whipped it up in about a half an hour, slicing apart an old dress that had been banished to the local Survival Center pile, taking scissors and hot glue gun (I don't generally sew) to fabric scraps, using fabric markers to "stitch" it all together, and fashioning a Sally-esque, Dr. Finkelstein creation that would certainly not earn me a spot on Project Runway. Soon, Sally will fling herself out of this tower window, stitch and stuff herself back together, and join her Zombie-child in Halloween town.

After the sugar harvest is in, we'll head to our fire pit to celebrate Samhain (sow-in), the ancient Celtic festival that marked the end of summer and the harvest and celebrated their new year on November 1st. Amidst the dread of the coming darkness and cold of winter, which was a time often associated--for good reason--with human death, Samhain invited the ghosts of the dead to return to earth through the blurred boundary that was thought to exist between the worlds of the living and the dead on this night. The ghosts wreaked havoc, as you can imagine, but it was a welcome sort of mischief for the Celts all those 2000 years ago, since the Druids, or Celtic priests, were able to more easily prophesize about the future in the presence of these otherworldly, roguish spirits, an undertaking that often brought about much needed comfort and direction amidst the chaos and volatility of the natural world on which they so depended.

We all strive to button down the chaos of the world in our own little ways, masking the fear with a bold face, perhaps, or shunting the unpredictable into neat little boxes of tidy order. 2,000 years ago or not, there's something about finding reassurance and protection before the onset of the harshness of winter's extremes that makes sense. Back then, there was no trick or treating, no elaborate costume parties, no trick-or-drink revelry at the local colleges; but as part of the Samhain celebration, people did in fact don costumes, though not ones attainable at your local big box/buy crap store, and not ones easily made by the faint of heart. Instead, they dressed in animal skins and heads, gathered around huge bonfires built by the Druids, and made offerings to the Celtic gods by burning crops and animals in the fires. After trying to stave off winter's dread by telling each other's (good, one would imagine) fortunes, they used the sacred fire to re-light their own hearth fires at home, bringing in the protective powers and spirits of the Celtic dieties for additional comfort and reassurance.

Personally, I need all the comfort and reassurance I can get. So tonight, I'll be revisiting the old pagan traditions of Samhain, offering my old post-surgical binder bras to the dieties, and bringing in the protective fire to embolden my spirit and fortify my soul. And somewhere along the way, I'll be following the wanderlust that lurks deep in my heart, sending me spiraling over the edge, willing to sacrifice life and limb, but knowing that I'll be able to put myself back together, however many pieces there may be.

Happy Halloween! XX, L.

Thursday, October 23, 2008

"What I love is near at hand, Always, in earth and air." ~ Theodore Roethke

One night not too long ago, we got out the sparklers and Dominick painted light scapes onto the pitch black canvas of the night sky. This time of year, when the dark arrives to snuff out the sun earlier and earlier each afternoon, we have to work harder to catch the sunshine before it dips below the hills in a fiery exit. The change is so dramatic and quick that you can almost feel the earth spinning and drumming through space on its autumnal orbit of shifting spheres of light and dark as the tilt pulls us farther away from the sun and leaves only traces of the endless stretch of summer days in our northern skies.

The sun, with all those plants revolving around it and dependent upon it, can still ripen a bunch of grapes as if it had nothing else in the universe to do. ~ Galileo

We've been walking in the afternoons, trying to store up on colors and warmth before winter leaves the pantry bare. We take the dog, who strains on the leash until we release her into the wilds of burdock and asters and milkweed, where she can aid in the seasonal task of seed dispersal and tick-gathering. She rushes through the tall grasses to feel the tickle on her belly, bounds and bounces with tail high and ears flying to search for something, anything, could someone please throw me something?

We've been walking these roads for a long time now, but long gone are the strollers and the simultaneous naps and sweet Zephyr, who walked on a leash with much more dignity than our current 4-legged love Daisy, who was clearly born to run, catch the ticks on her belly, and sneak a swim in the old beaver pond no matter how cold the water might be.

The fields and hills of Gill are lovely this time of year, and yet, like so many other things, the familiarity of place is at once comforting and repelling, and the beauty alarmingly ephemeral in how quickly it changes from day to day. Sit out a day, and you just might miss it.

I long for the unexpected delight at discovering an unexplored back roads or wooded trail not yet taken, a chance to step off the beaten path and go a different way. And it's the promise of this in every day that keeps me going, that makes me wake with the sun and listen for the hidden discoveries waiting to be found. It's a strange kind of wanderlust, arriving every so often to lift me off the track, blow the dust out of my wheels, and put me back on going a different direction. And the wonderful thing is that I don't necessarily have to go anywhere at all to expand my sense of this moment in time; it's the process of changing pace, direction, passengers, cargo that opens up a new perspective, a broader horizon, a more interesting itinerary, even if I make it up as I go along. It's not the speed, it's the velocity, the rudderless ride, the search for serendipity.

There are unexpected delights in each and every day, and thank god for that because if there weren't, I'm not sure how I would get out of bed each day. Some days, I don't get out enough, and I feel numb and disengaged in my slumber. All it takes, sometimes, is going outside, feeling the breath of air on my cheek, the rise and fall of lungs, the thump of my own heartbeat in time with the pulse of life around me. I am reminded to take the time to simply be in this world, to take notice of the Canada geese honking and flying overhead, listen to the squirrels crashing through leaf litter, busily storing nuts, then hightailing it up the long, bowed tree limbs, bear witness to the woolly bear caterpillars' silent, patient crawl into hibernation, seek out the crush and smell of apples, taste the sweetness of the last fall raspberries, and feel the crunch of the leaves underfoot. This is my sanctuary, my respite, the food that sustains my spirit.

I walk out to the gardens, drawn in by a snapping sound that bounces off the tall stalks of decorative grass and floats out intermittently to find me on the lawn. Where is it coming from? I edge closer and the sound intensifies, snap, snap, snap. There is no real rhythm to it, though, just a random release of spontaneous sound that is positively filling my ears with wonderment. Standing on a boulder that marks the spot where our two cats Kitty and Chubby were buried long ago, I am suddenly surrounded by a flurry of snaps that sound a bit like those little white nuggets of gunpowder that provided hours of amusement when I was a kid, and I would throw them hard on the pavement to crackle and snap at my feet. Dominick joins me on the rock, and we scan the dried perennials for the source of the snap, and finally find, in the masses of phlox that surround us, the progenitor of this odd, unexpected concert. Dominick recreates the cheerful chorus, pinching the dried pods of the phlox so they burst open to send their seeds flying, the resultant snap! echoing over and over again throughout the garden.

Those who contemplate the beauty of the earth find reserves of strength that will endure as long as life lasts. ~ Rachel Carson

We fill our shirts with pears that have fallen from our scattered trees, vowing to once again prune the long-neglected trees in the spring so that the fruit might swell and grow with more sugar and less grit. For now, the ground beneath each tree is covered with what's been an enticing breakfast for the deer that call the wetlands behind our house their home. Some mornings, if we've happened upon the quiet of dawn, the deer will be at the tree, nibbling the pears, slowly, with big dark wet eyes staying alert for that noisy black dog who loves to crash through the bramble in hot pursuit of a thrown pear, or a skittish deer.

We've enjoyed cold weather crops from our garden throughout the fall: kale, chard, green beans, eggplant, peppers, winter squash, raspberries. But the deep freeze has come to put an end to the growing season and drain the color out of the hills, and the garden sits lifeless, save for the kale that seems to thrive in this frosty air. We've put up jam, frozen berries, corn, pesto and beans, stocked up on potatoes, carrots, apples, and squash. And yet there's always more I wish I had done, could do. Most days, I'm happy that I've had the energy to simply bring in more wood for the fire. But it is these daily and seasonal rituals that sustain me: making applesauce, sweeping the porch, building a fire, putting the gardens to bed, filling our shirts with pears. I take comfort, too, in observing the work of those around me, the farmers clearing the fields of cow corn, hauling in the last of the pumpkins and squash, picking apples, pressing cider, making preparations.

Some keep the Sabbath going to Church, I keep it staying at Home - With a bobolink for a Chorister, And an Orchard, for a Dome.
~ Emily Dickinson

Sometimes, when we let our hearts, rather than our habitual feet, lead us, we stumble upon unforeseen delights that bring light into our day, awaken our senses, and embolden our consciousness with something that is merely and wondrously new and different, an offering to enliven the old, the tired, the dull. Dominick and I happen upon a such a delight in Dummerston, Vermont one recent afternoon. After following Kipling Road from the School for International Training, where Luke is playing soccer, past Rudyard Kipling's Naulakha, the engaging old house where he wrote the Jungle Books and which he called a "jewel beyond price," and into colorful views of the hills and mountains beyond that pepper our journey down this meandering dirt road with stunningly gorgeous slices of fall beauty, we find Scott Farm, the 600-acre Landmark Trust-owned largest producer of heirloom apples in New England where portions of The Cider House Rules were filmed. We are treated to samples of the heirloom apple varieties that they have preserved and safeguarded from centuries ago, including Thomas Jefferson's favorite apple (the Esopus Spitzenburg), the oldest variety brought to the New World in the early 1600's, and Julia Child's favorite baking apple. With names like Ananas Reinette, Roxbury Russett, the Winesap, it's hard not to want to fill our bags with some of each, so we do. We buy some cider, too, in the largest Mason jar I've ever seen, and as soon as we are in the car, we unscrew the lid to taste the smooth, sweet cider that is easily the absolute best cider we have ever tasted. Later, we'll head to the Brattleboro Food Coop and see Scott Farm's apples for sale there, but it isn't just about having the apples and cider to enjoy, but having had the experience of going there, filling our memory with that first enchanted view of the inside of the barn, where all the different varieties are lovingly boxed and labeled according to type, in various and surprising colors and textures and sizes, some burnished red, some honey yellow brown, and one, the color of the purple Berkshire hills; some smooth, some mottled, some thick and thorny; some fat and round, others nearly fairy-sized in their diminutiveness, and one with a protuberance that earned it the name of Sheep's Nose. It's about being able to read about each variety, and learn about the history and sheer serendipity of growing apples from Ezekiel Goodband, or Zeke, as he likes to be called, the kind, long-bearded man who serves as keeper of the apple trees, who offers us slices of several different apples, talks about the ancient grafting technique he uses, and the often-haphazard results gained from the very first seeds that were planted so long ago, which he likens to "monkey might get a Hamlet, if you're lucky, or..." It's about smelling the cider being pressed, tasting the cider right out of the jar, and having the friendly (is there any other kind?) black lab gently steal my apple core out of my hand.

When we understand that man is the only animal who must create meaning, who must open a wedge into neutral nature, we already understand the essence of love. Love is the problem of an animal who must find life, create a dialogue with nature in order to experience his own being. ~ Ernest Becker

One morning last week, I stepped out into a world of silence. The night had cast an eerie white frost over everything: leaves, grass, car windows, fallen pears, sentinel pumpkins, cobwebs. The pointed limbs on the bare trees suddenly looked like a Tim Burton-esque study of frozen finger tips, milky white and admonitory. As the sun struggled to rise in the sky, the shadows moved throughout the yard, releasing patches of land to warm in the sunshine. If I listened closely enough, I could hear the quiet, subtle thaw breaking and melting the tiny ice crystals, recolorizing the world in reds and greens and oranges and yellows, and restoring life to the fields and trees and thickets for one more day, at least. But after a deep freeze, there is life that hides away unseen, remains suspended until the spring, or does not return, and today, despite the warming sun that broke my sleep with the promise of blue sky early this morning, there is, amidst the fluttering of leaves, the intermittent thudding of the pears that still fall, ripe and heavy to the ground, and the occasional splash and brush of wing on water as the geese and ducks navigate their departure for softer climes, a silence that catches my ear, a silence reflecting the absence of the constant buzz and hum and song of the crickets and bees and songbirds that offered up palpable, vibrational echoes of the life that quietly surrounds us in the warmer months. The leaves have been swept away by the bluster of the fall winds, opening up the view beyond our stone wall, and bringing in thoughts of winter. I know now that winter is coming, with its long stretches of quiet and cold and absolute stillness, and I fill with dread at the thought of spending another winter unable to take part in the unexpected festival of snow and ice, in the rush and swoosh of skiing fast, and the serenity of a mid-winter woods walk. And as I mourn the crickets and the loss of light, I must also celebrate these changes, find the stirrings of life in my own seasonal shifts and tides, and stay open to the possibilities, even as I steel myself against the phantoms that have blown in with the chill to pester me with shadows of last winter’s gloom.

I must trust that this winter will be different, that I'll be able to stay connected to the pulse of nature, listen with an open heart, deepen my healing, continue to grow and feel strong and healthy, feel the spin of earth beneath my feet, close my eyes, and enjoy the ride, wherever I go, whatever comes my way, whatever I find, whatever I learn. Perhaps the colors and warmth and jam we've stocked up on will brighten even the bleakest winter days. And perhaps Winter will surprise us, and bring about a new lustre of hope and festivity that will line our days with gold: wherever I go, here I am.

Climb the mountains and get their good tidings. Nature's peace will flow into you as sunshine flows into trees. The winds will blow their own freshness into you... while cares will drop off like autumn leaves. ~ John Muir

Friday, October 17, 2008

Painless, Simple, & Fun: You, too, Can Get a New Nipple in Less Than an Hour

It’s Thursday, and the rain has cast a damp chill about the air outside and in the house and I find myself longing for the warm festivity of yesterday, when the sun shone bright and set the world ablaze with a parade of colors that I wanted to bottle and save for later, when I might release the poplar yellows and fiery reds and oranges of the sugar and swamp maples into the monochromatic, steel cold white ice of winter.

Yesterday was one of those days that I just wanted to wrap around me and wear, over and over again, to keep out the chill of the most current crop of global chaos and crisis, cloak that raw vulnerability that gives rise to the phantoms of fear, and rose tint my world against the impending loss of light and color. The boys and I even went outside to read and write poetry, and we stumbled upon this beauty from Robert Frost that seemed to capture the day perfectly.


O hushed October morning mild,
Thy leaves have ripened to the fall;
Tomorrow’s wind, if it be wild,
Should waste them all.
The crows above the forest call;
Tomorrow they may form and go.
O hushed October morning mild,
Begin the hours of this day slow.
Make the day seem to us less brief.
Hearts not averse to being beguiled,
Beguile us in the way you know.
Release one leaf at the break of day;
At noon release another leaf;
One from our trees, one far away;
Retard the sun with gentle mist;
Enchant the land with amethyst.
Slow, slow!
For the grapes’ sake, if they were all,
Whose leaves already are burnt with frost,
Whose clustered fruit must else be lost—
For the grapes’ sake along the wall.

~ Robert Frost

Somehow, the rich ripeness of the day kept me close, and I did not think about today’s unraveling, but only of the wish to make it all last a little longer.

Despite the fact that my birthday was two days ago, and the rain has come to shut the parade down, today is the day that I get to actually unwrap my birthday present, and yet as curious and eager as I am to see what’s inside, I am reluctant, too. I’m not quite sure what I’ll find underneath all the layers of thick cushiony bandages and adhesive tape. What exactly will my new nipple look like? What will it feel like? And what if I don’t like it? What if it looks horrible? What if it really smarts when I take the bandages off? When I shower? What if it’s still bleeding? And how will it change my left girl? Will she look better for the adornment, or will she have lost the purity of her naked self?

Somehow it’s fitting, then, that I was able to keep myself under wraps until today, and reveal myself not on a day that blazed with the spectacle of the autumn heraldry but instead, wait until the rains had come to wash out the colors and mute the pageantry, so that the subtle reckoning might be fully heard. The day seemed destined to break free from yesterday’s display, leaving itself and the girl unwrapped, changed, somehow, different, bared. Here I am.

* * * * * * * * * * * * *

I don’t know if it was just the swirl of anticipation and anxiety that was messing with my calm or the full moon rising swollen and powerful at my back, or the fact that I was heading into day #66 of my cycle without getting my period, but I suddenly was wishing I had driven in alone, and could stew in my dread without having to explain myself. But here I was, off to see the Wizard, and somewhere along the start of the Yellow Brick Road, I had picked up three traveling companions, Luke, Dominick, and my mother, all eager to help me stave off the lions, tigers, and bears that were surely waiting behind the OR doors.

(Remind me to never drive with my knees in front of my mother again.)

For the most part, we traveled easily through the Route 2 corridor. No flying monkeys, no fields of poppies, no unexpected fires, just a few state troopers trawling the roadways for speedsters on their broomsticks. Early in the trip, and still relatively close to home, when my stress levels about running late were just about peaking, we were slowed to a crawl when forced to follow a line-painter truck laying down a meticulous white stripe on the right hand side of the road. For a split second, I wanted to drive through the wet paint and leave white tire tracks in diaphanous ribbons of haphazard joy all across the pavement, but I quickly realized my bad temper had left me with a penchant for trouble, so I dutifully obeyed the cop who had kindly asked me to follow him, and the line-painter truck, with care, and it’s all I could to do to stay clear of the wet paint.

The crunch of tortilla chips and the snap of grapes filled the car for much of the morning, and we quibbled over being quiet so we could listen to the audiobook (the excellent “Mayflower” by Nathaniel Philbrick), and over still being hungry. Harrold, bless her heart, told us we had time, even, to stop for a snack at the Natural Gourmet in West Concord, so the car filled again, this time with the smell of dumplings and sesame noodles and root beer and hazelnut wafer cookies, and by the time we had arrived at Newton-Wellesley Hospital, the boys’ bellies were filled with contentment.

After registering, filling out more medical forms, and getting my nifty id bracelet, we all headed off to pre-op, with its all-too familiar curtained rooms, the steady stream of nurses and surgeons roving about in masks and scrubs, and the sound of wheelchairs and gurneys being rolled to and fro, doors swinging open and closed, voices whispering in low tones. When we arrived at my little curtained room, there is no gurney, just a single chair in the corner, so we had to wait for awhile with our backs helping to hold up the walls of the surgical center until a nurse came in with a fresh bed on wheels. I could tell, by the rush of people just beyond the curtain, and the hint of confusion drumming the air, that the full moon was working its magic on the operations of the OR, infusing a bit of chaos into this well-oiled machine, and I suddenly realized that I should expect the unexpected on days like this.

But nothing would befall me. No menstrual mischief. No green tea emergencies. No sneezing fits or slips of the scalpel or needle. Initially, after I had said my quick good-byes to my mother and the kids, there was some confusion by a few of the pre-op nurses, when they assumed that I would of course be having general anesthesia in order to have a procedure like this done, and so, despite my insistence that it was to be done locally, stubbornly got out the IV equipment and admonished me for eating earlier in the morning (just when I was feeling light-headed and wishing I had had something more to eat!). Finally, they were set straight by a wonderful nurse named Marti, a familiar face from my last surgery, who took over and restored calm and order to the scene.

On a day when I would get my new nipple, it was a minor, unequivocal ripple.

It soon became clear that the surgery was going to happen much later than the originally scheduled time of 1:50 (can you say Mercury in reverse?). A nurse brought me a stack of magazines, told me to settle in for a bit. There wasn’t much else to do, but sink back into the soft pillow, try to replace my anxiety away with, say, interesting ideas for sprucing up my living room, and try to enjoy this little delay.

About an hour and a half later, the magazines long since discarded on the empty chair next to me, my patience for just sitting and worrying and staring at the blue curtain starting to wear thin, the OR finally nurse came in, telling me what a great job Dr. Pitts does with new nipples (hurrah!), that she’d witnessed several of the procedures, and everyone had done remarkably well with it. Marti asked if she might watch the procedure, since she had never seen it before, and I said of course, that I didn’t mind at all. Later, the OR nurse explained that it helped ensure better pre-op care if the nurses had a better understanding of what the patients would experience in the OR, especially since they were heading in wide awake, and without the buffer of sedation, leaving them vulnerable to a few more emotional complications than usual (ie, a total freak-out).

Dr. Pitts arrived, and I suddenly felt much more relaxed. She had me sit on the edge of the bed, hands on my hips, while she used black marker and measuring tape to pinpoint the exact location of where my new nipple should go. She quickly peeled off and did away with the nipple placement sticker that I had put on earlier in the day after some serious deliberation (but no measuring or math, admittedly) and it was immediately clear that the nipple placement exercise was simply a way to make the patient feel more in control of something that they had absolutely no control over whatsoever. And as I had said before, I was completely happy to have Dr. Pitts do the math, so to speak, and figure out where it should go. What did I know?

It was interesting to watch her figure it all out. It was one of the more fascinating, unusual real-world applications of math I’ve ever witnessed, actually. She measured and marked the center of my chest, including the top of breast bone and the middle spot in between my two girls, then from center line to right nipple, and finally, from center line to where left nipple would be according to the triangulation and configuration of right nipple. Sound complicated? Think of a sprightly squirrel using the same methods of triangulation to figure out where she’s buried, or should bury, her acorns and chestnuts, and you’ve got the general idea.

Since my right nipple is slightly lateral, or headlighting a bit to the side, Dr. Pitts decided to position my left one similarly, but not as lateral, explaining that “nipple constructions don’t do very well in such a lateral spot,” or something of the sort. In her words, she said she would “split the difference.”

After about six or seven minutes of marking her calculations in black on my chest, and drawing the modified star flap near the scar on my left girl, which she would later slice to life and reconfigure, the flower-like pieces fitting together like a puzzle, into a nipple, she covered me back up, had me lie back down, and told me what to expect: some people do freak out, she cautioned, because of the big OR lights (there is no minor-procedure room at NWH), masked docs and nurses, and general surrealness of the scene, but she would be talking to me the whole time, and music would be playing, and she knew I’d do just fine.

I did too, actually. I really like Dr. Pitts, and I think she is incredibly competent. I had no worries. I had emptied my bladder. I hadn’t gotten my period. I wasn’t sneezing. And finally, finally, I’d be getting this over with.

The last time I had been wheeled into the OR room at NWH I had been mostly awake, a bit loopy but not totally gone, and remembered the big “stage” lights and the general cold sterility of the room, but my awareness then had lasted only a half minute, and I had been put under instantly, and missed out on all the fun. This time would be different. Because I was awake and fully cognizant of what was happening, I would be able to further my understanding, and therefore lessen my anxiety, of what really went on in the OR. In a strange way, I was looking forward to this. I liked the idea of being awake for this, of being an observer, a participant, even, and not just a knocked out, limp body.

As with most surgeries, everything happened pretty quickly. I got up from my wheelchair and climbed up onto the OR table, a narrow strip of blessed comfort (ha!) and serenity. They asked me to position my arms out to the sides, noticed my goose bumps, and proceeded to swaddle me in warm blankets. Lying in this position, I was glad that my blue surgical cap was infinitely softer than the crown of thorns I could have been wearing. My right pointer finger lay clutched and clipped in the embrace of a monitor that made sure I was breathing deeply, my oxygen levels translated into an annoying series of beeps that would soon fade into the background. A blood pressure strap intermittently squeezed my arm, making sure I was not in freak out mode, and music, and good music at that, was being piped into the room at just the right decibel, not overpowering and forcing the issue (You will relax! You will!), but filling the room with just the right amount of a more relaxing vibe than the incessant beeps and hushed voices could provide.

After Dr. Pitts scrubbed me down with thick, sticky brown Betadine solution, the nurses erected a tall tent of sterility, a bit of germ warfare, directly in front of my face, blocking my view of the surgical spot and making me feel curiously detached from the rest of my body. The smell of the unfurled cloth was a bit noxious, so much so that I offered, difficult patient that I am, what I think was my only bit of constructive criticism during the procedure: to scent the cloth with lavender, and allow the patient to reap the benefits of the ensuing, relaxing aromatherapy. The nurses did their best to keep the “curtain” off my face, and I was grateful, because the stranglehold of claustrophobia had begun to creep in, and I was aware of having to intentionally fill my belly with slow, deep breaths to try to keep it at bay. The smell and the claustrophobia soon dissipated, as I grew accustomed to the gauzy barrier that separated me and Dr. Pitts. I was glad for the distance it provided; as much as I was curious about what she was doing, I didn’t really want to see her cut into my skin, mop up my blood, and stitch me up.

Just before the anesthesia needle went in, over and over again, the slow burn of the drug emanating throughout the area, I tried to imagine being in my acupuncturist’s office, breathing in and out as the needles were positioned, waiting for the sudden zap of the electrical current, the rush of the release, the gradually awakening of the relaxation response. It seemed to work, and I didn’t really feel a thing, just the pressure of Dr. Pitts’ fingers, scalpel, needle and stitch as she worked to slice and dice, carve my pumpkin girl, and make me a nipple.

For about forty or so minutes, I lay there surrounded by Dr. Pitts and the OR nurses, and Marti, who had come in to see, for the first time, just how it was that a nipple can be constructed out of skin under local anesthesia in less than an hour. Dr. Pitts and I struck up a conversation, and the other women chimed in every now and then, but I felt as if Dr. Pitts and I were chatting over tea, or lunch, or a soccer game, talking about music, our kids, and daily lives in that easy way that women can slip so comfortably into, regardless, it seems, of who might be performing surgery on whom.

The effortless conversation, vibe of focused productivity and craftsmanship, and ring of female faces reminded me a bit of being at a quilting circle, but I had the sense of being underneath it all, of being there and being a part of it but being separate, and of being the one who was being quilted upon. I could feel Dr. Pitts at work; a sense of being poked and prodded, pushed this way and that, something being peeled back, wound together, mopped up. For a while, it felt as if someone was making sand castles on my chest, and I could almost feel the sensations of scraping, digging, moving and smoothing of the sand, and then someone was hammering out a clay pot, with gentle pounding and coiling and careful piecing together, and then kneading a thick slab of dough, punching, turning, shaping. The final minutes were less dramatic, and just as painless. I could feel the focus narrow, as if Dr. Pitts were now using embroidery thread to stitch something complicated and delicate onto my chest.

Throughout the entire time, there was music floating about in a wonderful, unobtrusive way; I could catch it or not, but it was there if I needed it. It was all good music, straight from Dr. Pitts’ i-Pod "mellow mix," and I was glad for it, the familiarity of old favorites like Bonnie Raitt, Tracy Chapman, and Dire Straits adding to the semblance that this was somewhere other than the OR, that Dr. Pitts was doing something other than fashioning a nipple out of skin from my breast, and that I, perhaps, was surrounded not by nurses and doctors, but by old friends. Every so often the beeping would intrude, or the blood pressure band would tighten, snuffing out all the oxygen in that little finger of mine and ceasing the beeping for a few seconds, until the band would unravel, the nurses would whisper in astonishment about how my blood pressure kept going down during the procedure, and the beeping would resume, allowing me to resume conversation, or catch the end of a song.
There were several songs that transported me out of the OR: when Joan Armatrading’s Love and Affection came on, I was whisked back to Exeter days; when I heard Bruce Springsteen’s Secret Garden, I was infinitely grateful that it was this particular Springsteen song, one that I actually liked and not one of the loud, unruly ones that would have brought a rowdy bunch of Club Bacchus boys from Williams straight into the OR to shout out Boss songs around a keg of cheap bear; and when Neil Diamond's Sweet Caroline pushed its way through the conversation, I had to laugh (though stopped immediately after realizing that my laughter made my chest and belly heave, and I really didn’t want to mess Dr. Pitts up), thinking of Fenway, and the distinct possibility that maybe, just maybe the Sox would beat the Devil Rays to take the ALCS.

I hadn’t been worrying about laughing during the procedure. Sneezing, having to go pee, getting my period in the middle of it all, perhaps, but laughing? Funny thing is, as it turned out, the procedure was painless, it was simple, at least from my end, and relatively so, though I would never diminish Dr. Pitts’ impressive and complicated sculptural talents and say that for her it was a simple procedure; and if I may sound completely whacked, it was fun, quite possibly the best part of my day. No lions, tigers, or bears running amok in the OR. No green-faced, dog-stealing witches. So there. Instead, it really had been painless, simple, fun. Maybe birthday wishes do come true.

Before I was scrubbed down and bandaged up, the nurses all oohed and aahed over my new nipple. Beautiful, they said. Lovely. Amazing. It was odd not being able to see what they were looking at, but I knew that like many things, for good things you must wait.

By the time the curtain had come down, Dr. Pitts was putting the last of the adhesive tape over my left girl, who was at this time unrecognizable, topped with a big, bulbous cushiony wad of dressing that made her appear unsightly and unstable. Before she left, she gave me my final instructions: keep the bandages on for another 36 hours, at which time I could then take them off and shower and inspect things. Keep an eye out for bleeding, redness, any kind of discharge that might indicate infection. I was to only wear a soft bra, not to put any pressure on my left side, and abstain from vigorous exercise for about a week. And as for sleeping, good luck she said, and be careful not to sleep on the site; until the stitches were removed in another two weeks, I’d have to be careful not to pull any of them out. She said the nipple would shrink to be half the size it was now. I couldn’t help but think again of those big wooly nipple buttons on my grandmother’s old sweaters. Just what would it look like when I took the bandages off?!

I thanked Dr. Pitts, said I would see her in two weeks, and took a wheelchair ride into the post-op area, where it felt strange (and wonderful), for once, to be fully awake before I arrived, and though I was not fighting grogginess or nausea (hurray!), the nurse offered me juice and crackers, pain killers for the ride home, and paperwork, ever more paperwork, to sign. I changed back into my clothes just as Luke, Dominick, and my mother arrived, and the nurse, after seeing how ridiculous my girls looked under my fitted one brave chick shirt, brought me a blue scrubs shirt to wear over it and disguise, somewhat, the fact that my left girl looked about three times as big, and a zillion times as strange-looking, as my right girl.

After all, sometimes it’s hard to find the right wrapping paper for those odd-shaped, spherical gifts.

After a long drive home, there were more gifts that awaited me, and it was fun to actually be able to open a few presents, rather than simply stare at the wrapping and wonder what might be on the inside. But I was exhausted, ready to crash. And after all, my birthday had already been full of unexpected gifts and blessings: a six month cancer-free check up, a box full of personalized m & ms from my friend Mike, numerous greetings sent via email, voice mail, snail mail, and Facebook from friends and family, and a wonderful book of poems and essays by Mary Oliver from an old friend from Williams, who sent with it a touching letter containing this most wonderful birthday wish: “May you find in each day of this new year some sort of happy outcome, no matter how small, no matter how simple.” Thank you, Ginger. I can’t think of anything more perfect to wish for.

And there was the matter of my new nipple, of course, that wouldn’t be revealed for a few more days. But for now, I would have to be content to try to get some sleep. Between the lingering soreness and awkward bulkiness of my over-wrapped, misshapen birthday girl, the bright surge of moon light flooding the windows and the lure of the debate, I wasn’t counting on getting much. The buzz of the day finally fizzled out, and at some point in the early morning, I stumbled into sleep, dreaming of flying monkeys and the Wizard behind the curtain.

* * * * * * * * * * * * *

It turns out the Wizard is a woman behind the curtain, and her name is Dr. Pitts. And she made me a beautiful nipple. I don’t know exactly how she did it, but there it is, staring back at me from the other side of the mirror.

The adhesive was a bitch to get off, as I suspected it would be, but once I figured out how to hold my skin down along the edges while I peeled it off, it hurt a whole lot less. After about two or three minutes of careful peeling and it was nearly done, and once the last bit had been freed, the whole of the wrapping came off like an eggshell, revealing the pale pink, delicate new niplet inside. I was relieved when I saw it, because it didn’t look anything like those big wooly buttons that hung like oversized nipples from my grandmother’s sweaters. Despite being covered in dark, dried blood and stitches here, there, and everywhere, she looks like a nipple, after all, just a little worse for wear, perhaps, from the birthing process which brought her into this world from scratch. Her nubby, cylindrical end is less rounded than my right but absolutely suitable for the aesthetic purpose she now fulfills. And all that math? Well, clearly, it paid off. She sits in a great spot, balancing out my two girls with a symmetry that I haven’t had for a long time.

When I shower, I am surprised that the water cascading over my girl does not seem to bother the new nipple in the least. I soap up gingerly, being careful not to mess with Dr. Pitts’ work too much. The caked blood lies underneath the superglue that keeps the stitches in place, so it’ll have to stay until my appointment in two weeks. But once it’s off, and the stitches are out, and I get my tattoo coloring the deeper pink of the areola and nipple, my left girl will look amazing. I might not even recognize her.

For now, there’s a small bit of nipple that is still bleeding, so I carefully apply some ointment to it and try to whip up a bandaid that doesn’t press it down too much. It’s been a long while since I’ve had a nipple, even a fake one at that, and it seems strange to see a protrusion under my shirt again on that side, to feel the rub and scratch of clothing against skin, although since the majority of the feeling on that side has yet to return, it is a diminished sensation, but at least it’s there. My new nipple seems to be fitting in well. She’s still smarting a bit, and I’ve got to be mindful of her when I lift things, hug my boys, and pick up the cat, but she’s probably the coolest, weirdest birthday gift I’ve ever received. And she was definitely worth the wait. (Thank you, Dr. Pitts!)

Black Snake

I startled a young black snake; he
flew over the grass and hid his face

under a leaf, the rest of him in plain sight.
Little brother, often I’ve done the same.

~ Mary Oliver

Tuesday, October 14, 2008

Off to See the Wizard!

It's mid-morning, and already my stomach is tied up in serpentine knots of anxiety. Of course, the five or so cups of green tea have only added to the buzz that has gripped my central nervous system, and now I'm worried much less about sneezing during surgery than having to go pee. Sorry, Dr. Pitts, but hold that stitch! The green tea is talking! I have no doubts that she is as skilled with the blade as the ancient Viking warriors were, who could cut out a man's heart and show it to him before he died, and take scalpel and stitch and finish the nipple before my bladder truly threatened to overflow.

I'm wearing my one brave chick shirt (thank you, Kate), because it emboldens me when things seem a little scary. Not that I'm scared, mind you, but my uncertainty around the procedure, which I tried to ease by searching for reassuring testimonials on the web (couldn't find any), has creeped into my consciousness, and made me wish I had more information. I would have loved to have stumbled across a description of the local skin flap procedure that said it was "painless," "simple," "fun." Okay, so maybe fun is stretching it, but you just never know. After all, it is my birthday today and I am hoping for a little extra sedative for the ride home.

I scrubbed myself silly in the shower because I'm not sure when I'll be allowed to shower again. I washed my hair twice, and shaved my legs, even, and wished I had had some nail polish remover to take off what's left of the summertime pink polish that's chipping away on my toes. What is it about going in for surgery that makes you think you have to present your best bare body ever? Is it the nakedness of the whole affair? Making sure you're clean and spit and polished from head to toe certainly goes beyond the universal mother's advice of wearing clean underpants because you never know what might happen.

I tried to do my homework. I tried to find a good spot for the nipple placement, but really, the nipple placements are just little round bandaids that look absolutely nothing like real nipples (or even fake ones at that), so it's been challenging to say the least. After several tries, resticking it here and there, a little to the left, a little to the right, too high, too low, I've got one in position. Whether or not it's in the right position, I won't know until Dr. Pitts takes a look at it (and I'm awfully glad that she'll have the final say). And she may very well laugh at where I've put my nipple placement. After all, I'm not exactly well-versed in this kind of thing, and really, I should have paid more attention to where my left nipple was when I had it.

Isn't that what Joni Mitchell meant when she sang, "Don't it always seem to go, that you don't know what you've got till its gone..."? What was the name of that song? Big Pink Nipple?

As on the days of my previous surgeries, there is a full moon blasting its energies throughout the universe and adding to the precipitous balance of uncertainty and reassurance. Can you feel it? It kept me awake last night long after I should have been enjoying some deep sleep, the anticipation of the day aflutter in my heart, the moonglow blue and bright amongst the evening shadows. But I am grateful for her company. As well, I'm in my eighth week of my cycle without having my period, the Tamoxifen clearly declaring itself something to be reckoned with, but since I got my period on the days of my last two surgeries, I have no doubt that anything could happen today. And what with all the female lunar energy out there, I wouldn't put it past my body to concoct some sort of menstrual mischief just in time for the new nipple.

This morning, amidst the usual clutter of messages in my in-box from non profits asking me to sign petitions, host parties, stump for Obama in NH, send money, and forward appalling wolf-pup massacre videos to my friends, there were several sweet messages of happy birthday and new nipple cheer and well wishes from friends. Thank you, thank you! I am a much better person with you all in my life, and your thoughtful, generous words have once again given me the courage to go forth and greet my new nipple with a smile.

In the spirit of Ubuntu, in a demonstration of the web which connects us all, and as my Moon-Surfing Full-Moon update showcased, "this is the time we've known was coming and you're called to acknowledge your fear, own your path and continue to move forward and upward in the direction of your vision. However, the planets say your vision must be inclusive and of stepping out bravely in partnership with each other and the planet... or it won't hold up."

Sounds like an opportunity for all of us.

Ok, I'm off to see the Wizard. Hoping I won't meet up with any flying monkeys or fields of poppies on the way.

Monday, October 13, 2008

Nipple Pre-op

Tomorrow I’ll get my new nipple. After spending these past months getting used to a new left girl, she will once again be instantly and permanently transformed into something even newer, and stranger still. I have doubts as to whether or not she, or I, will be better for it, but I’m scheduled for surgery at 1:50, I’m in the books, on the schedule, and have already paid my co-pay of $250 (a fairly decent price for a new nipple, I thought), so it’s a done deal. No turning back. And by tomorrow evening, I suspect I’ll be quite remembering what it’s like to have really sore nipples (or even a newly constructed “fake” one), my post-operative smarting ushering me back into my long ago nursing days, when Luke or Dominick had been on a bender, and my nipples were sore and chapped and calling out for bag balm.

Just how does the plastic surgeon make a nipple? Do you really want to know? Do I? Years ago, it was standard practice for plastic surgeons (mostly older white men) to take skin from the woman’s inner thighs (called a “full-thickness medial groin graft”) or even her labia folds (called “torture”) to construct a nipple. The groin graft is still used by some surgeons, but not by mine. Dr. Pitts will be using skin from my left breast (which is pretty much all that’s left of my original breast—aside from the pec muscle that now rides the implant like an elephant in a circus—since the mastectomy did away with my real nipple, R.I.P., all my breast tissue, and much of my skin, that had to be stretched to make up for the lost skin and accommodate the new implant) to recreate the “nipple-areolar complex.” I'll be fully awake in the OR, locally anesthesized but not properly sedated. I won't be able to see what they're doing, but I'll be able to hear what they're doing, and that might be just as freaky. And I'm just hoping that I won't have any really bad sneezing fits at inoportune times, such as when they're slicing into me, or stitching me up. Ooops, sorry, but your sneezes set the nipple off-center a few centimeters.

It’s awfully hard to imagine what this procedure will be like. Dr. Pitts drew me a nifty little picture of this local skin flap once long ago, but I’ve lost it, and only remember a rectangular shape with a center, circular knob that represented the incision. I figure it’s okay if I don’t get it fully; it’s infinitely more important that she knows what she’s doing, and she does, and I have total confidence in her.

But that hasn’t stopped my mind from wandering, and wondering.

My grandmother used to wear these fitted cable-knit wool cardigans that had big grape-shaped buttons. When I think of getting my new nipple, I think immediately of those wooly buttons, and see Dr. Pitts using thread and needle to stitch one on the center of my left breast.

A friend asked today if the new nipple will “do anything.” Perk up in the cold? Deliver milk to my future babies? Sorry to say, but no. But it will provide some symmetry to my set of girls, some semblance of well-disguised normalcy, a hint of a real nipple underneath a bathing suit or tank top, one less question, perhaps, or lingering stare.

But let’s be real here: my nipple is gone, gone, and this new nipple will not match function nor form to my old one, and instead provide only symmetry and balance—still important—to my long-winded reconstruction project. Long gone is my areola, which housed the Montgomery glands (ever wondered what those little bumps were for?) that lubricated my nipple for breastfeeding purposes. There’s simply no way of re-installing those. Gone, too, are the multiple layers of fatty adipose tissue, the supportive Cooper’s ligaments, the milk duct systems containing the lobes, the lobules, and the lacteriferous tubules that brought the milk down from the glands into the nipple. By way of the excised breast tissue, the nipple and areola, and the introduction of Tamoxifen into my daily diet, my child-bearing and breast feeding days have gradually faded into the past as well.

But I still have my skin; albeit traumatized and diminished somewhat and sensory nerve damaged by all the snipping and stretching and scarring, it’s still mine. And tomorrow, it will go into service again, lending itself to a nipple sculpture of the most lovely variety (a girl can hope, can’t she?). I am most grateful. My new girl will soon sport a new nipple, constructed to match my right nipple in placement and size, though Dr. Pitts has warned me that the original projection will be impossible to equal. Sweater-button nipple, indeed.

I’ll have to wait another two months for my tattooing, the color that will render my new nipple and areola rosy-cheeked and life-like.

For now, I’m trying not to think about tomorrow’s surgery, but how to do my homework. For weeks, I’ve put off trying on those little nipple placements that Dr. Pitts’ office sent, but procrastination will only get you so far. As much as I’d just rather blow it off, I know that I should at least make some effort to figure out where my new nipple should go. It just seems so damn strange...

…As does telling people that I’m off to get my new nipple. And what to do, what to do if I should be running late tomorrow, find myself speeding along Route 2 only to be stopped by a state trooper? “Oh, gee, I’m sorry officer, but I’m in a rush. I’m getting my new nipple today, and I’m late!”

The whole thing is so bizarre that I have more than once thought that perhaps I don’t really need a nipple, after all, and can dispense with these surgical oddities. I've gotten quite used to my new nipple-less left girl, the deft surgical strokes running a residual, diagonal track of pink scarred tissue across the white smooth mound of skin, the bare, unfinished quality that speaks of stories and truths instead of deception and disguise. And after all, you can buy nipple prostheses in all different shapes, sizes and colors, even ones that can be customized to match your other nipple, made in the moulding room (not to be confused with the moldy room) in the hospital. Just stick it on, and you’re good to go. Heading to the pool for a swim? Just stick on your nipple underneath your suit and no one will know the difference! Planning on wearing that slinky dress to the party that shows every little bump and curve? Simply stick and go!

As fun (or creepy) as the stick-on silicone nipples sound, I’d rather not to have to bother. When I decided to reconstruct my breast, I signed on for the whole spiel—expander, implant, nipple, tattoo, all. I can’t stop now. I just wouldn’t be done.

And besides, going in for surgery to get a new nipple is a great distraction away from the fact that I turn 43 tomorrow, that yet another year has gone by and I still don’t know what I want to be when I grow-up, that another birthday has come and gone and I am no closer to figuring all this out than last year. Perhaps, though, I have learned a few new tricks this past year. After all, on Friday I met my fear head on in the mammography studio at MGH, made peace with the clampdown, and relished the feeling at being told that “everything looked clear.” Six months out and cancer-free. I’ll take it in baby steps, celebrate the small victories, and try to find the light in each day. Time to do my homework. XO, L.

Friday, October 10, 2008

Phantoms of Fear: Facing the Clampdown

Friday, October 10

Harrold, our GPS Viking Queen, obviously confused by all the recent re-maneuvering of Boston roadways and infrastructure by the way she keeps blasting out directions in Norwegian, sends me spinning my tires in search of Mass General, and in particular, the parking garage for the Wang Building. She tells me to Sink Peter, whoever Peter is, then Sink Venstre. But there is no turn where there should be one, and Harrold thinks I’ve totally botched it, and yells something that sounds like Decompleded, and then, her voice turning to a low growl, Talk to me Peter

I do wish someone somewhere would invent a GPS system that could be programmed with all your favorite celebrity voices. I’d follow George Clooney just about anywhere.

But for now, I’m stuck with Harrold, and she’s better than nothing. Eventually, we figure it out, language barrier and all.

I have left ample time, for the usual traffic that makes a bottleneck of things at journey’s end, and I am glad not to be rushing. But as I wheel into the parking garage, my bladder begins to screech, all that green tea suddenly threatening flash flood, and I rush for the bathroom as soon as I’ve landed in the Breast Center on the second floor, a place positively buzzing with women waiting for mammograms and appointments with the breast docs who make this center their professional home.

After filling out several pages of medical history (you’d think that after filling these things out over and over again this year I’d have figured out by now what to write under “have you ever smoked?”—like “smoked what?”), I change into the gown and wait. I am led into a mammography room, stark and bare save for the familiar robo-like clampdown machine, its white, metallic, movable, crushing arms menacing me from above as I take a seat and wait my instructions. We have a bit of history, the clampdown and me.

The technician asks me for my “story,” and I give it to her in a nutshell: had breast cancer this past year, mastectomy left side in March, new girl installed this past June, nipple arrives in four days. Clearly, she wasn’t expecting this. But she is gracious, explaining that she has an order to do both sides, which she obviously can’t do (implants just don’t photograph well) so excuses herself for a few minutes to get the order changed. Another technician comes in and asks me to wait in the hallway for a few minutes so she can use the equipment in the room. As she takes her place behind the glass, she is joined by two other technicians, who begin to fumble with the equipment in a way that makes me glad to be leaving. It feels strange to be unseated, but I am glad it is me, and not one of the older women I’ve seen in the waiting room, some in wheelchairs, some in wigs, most in various stages of discomfort and frailty, who must wait in the hall. This I can do, and it doesn’t bother me—but for someone else, it might feel as if they’ve been stripped of their Johnny gown and left to wait their turn in some crowded, public place.

My technician returns, the trio of trespassers leaves, and I am able to greet the mammo-machine, up close and personal. She takes three films in about 15 minutes, repositioning my right breast in the clampdown each time. She is gentle, deliberate, wastes no discomfort. My right girl is infinitely cooperative; she is an old pro at being manhandled, pulled, squashed. It’s my ribs I’m worried about. Crunch, crack. They’re just simply in the way.

I am glad that my left girl does not have to be further undignified by this procedure; surely, she would not hold up under the pressure, and given that she is due to be put under knife and needle again soon, it’s important that she’s left to look her best. But as the technician prepares my right girl for the final film, with a clampdown pinch that has reduced her to a pulp, I am sad that she must remain under such strict scrutiny for all time. There is a certain savagery about mammography—the painful squeezing of your breast into a flat, unrecognizable pancake, the uncomfortable, unnatural positioning, the bared vulnerability of the whole thing—that I simply don’t like, and yet, quite possibly, it was mammography that saved my life. The fact that it could save my life again sometime in the future is not lost on me.

I just don’t want them to find anything. I just want to be in the clear. I just want to go home. But all morning, all week, I have felt the fear mount a campaign of unyielding pressure to worry, fret, wring hands, and imagine the worst.

She asks me to have a seat in the waiting room until the radiologist has read the films, to stay in my gown in case she needs to take a few more shots. I walk slowly down the hallway. There are paisley dew drops scattered about my long Johnny gown; the strap houses a line of them, and as I rewrap myself in the comfort of the gown, I find myself taking the strap in my hand and starting to make my way down the line, dew drop to dew drop, fingers stopping at each one, impromptu prayer beads, to speak to myself, and find reassurance in the hushed echoes of repose. There will be no need for retakes. They got good images. Everything looks sparkling, healthy, clear. No cancer. No cancer!

More waiting. A woman is wheeled out in tears. I try to smile at her, send her some stranger comfort through the fear that has settled in the waiting room like a thick morning fog, but she bends her head down to dry her eyes, is pushed through the door out of sight, and the opportunity has gone. Another woman arrives to take the seat next to me. She is out of breath, wrapped in a blanket, and clearly rattled. An older woman in a black beehive wig waits with her companion for news that all is clear, that she can go. They whisper between them, the hush of forced quiet adding to the weight of the fog that has remained. The space feels dispirited, its occupants imprisoned in some kind of strange pergatory.

I, too, sit and await my fate. I try to focus on the vase of lovely yellow flowers, on the pile of magazines strewn on the table, but all I can feel is the sore pinch in my throat, the bubbling rush of nervous energy pushing from inside my chest, the dread and doubt clenching my gut, the chill of the fear that hangs around me in thick layers.

It’s been at least twenty minutes now. Has the radiologist found something suspicious on my film, has he, or she, summoned other radiologists to look, share an opinion, consider my options? Are they deliberating whether to take more films, or to send me over for a breast MRI? Or is something showing up so loud and clear that they’ve decided to go straight to Dr. Specht with another recommendation, a biopsy as soon as possible, perhaps, or a mastectomy on the right side? Damn, should have done both.

I realize that my thoughts have taken me to places I decided long ago I didn’t want to revisit. The self-doubts, the second-guessing, the destructive patterns of what ifs and should haves. Shaddup already, I tell myself. I'm going to be just fine. Will I go through this every six months? Or is it just this terrifying this first time, this first mammogram and cancer screening since the diagnosis, when the horrors of my last mammogram experience set off the ensuing trickle of dominos—the ball-dropping phone call, the retakes and magnifications just before biopsy and diagnosis—that still hasn’t quite played itself out?

The room has cleared out. Gone is the woman with her tears spilling down her cheeks. Gone is the woman with the beehive. Gone is her companion. Gone is the woman coughing and out of breath. One by one they’ve been summoned and released.

Where is my technician? No doubt her last words to me—“Don’t worry; I won’t forget about you”—were some sort of warning that this may take a while.

Another woman arrives, sinks into the plush loveseat, and settles into her thoughts. I can feel my breath skimming the surface of my lungs, my belly tight, lips dry.

And suddenly, I hear “Elizabeth?” and I see that my technician has appeared from around the corner. “Come with me,” she says, and I try to breathe as I grab my bags, my notebook, my jacket and follow her through the fog into a dark room lit only with the promise of good news, and it is not until she says “Everything looks fine” that I am able to exhale and feel the thump and drive of blood and breath through veins and lungs again. I feel my belly begin to soften, the release of fear and anticipation flowing through my fingers as I hastily sign the mammogram report and tell her “Thank you.”

It’s not until I’ve grabbed my clothes out of the locker and sat back down in my seat that I actually read the form and see that the first line has been checked: “No abnormalities—we recommend that you return for screening…as recommended by your doctor.” There are at least twenty options that could have been. And the first line? That’s reserved for the best news. I swallow this, taking my seat to wait for Dr. Specht, and feel the deep relief start to trickle through my system. The warmth has suddenly returned to the room.

A minute later, a nurse I recognize from Dr. Specht’s office fetches me and takes me down a labyrinth of hallways to an exam room that I instantly recognize as the site of my first meeting with Dr. Specht last February, when I sat numb and resolute, my head clouded in fear, trying to make sense of a life suddenly suspended by a sudden dizzying array of unexpected detours that hid menacingly in the road ahead. The phantoms briefly encircle me, but they are but ghosts, and as the release completes its full exhale, they vanish into the walls of the room, fold themselves back into my flesh, and try to hold on with each passing breath.

Dr. Specht arrives with her usual smile and good cheer, and friendlier apparitions, of reassurance, and the warmth and generosity of the good care I’ve received in this space, flush out any remaining anxiety. She tells me that the first screening is always the worst, and promises that it’ll “get easier.” We talk about the wild ride of Tamoxifen, and she encourages me to continue to eat well and exercise every day to help control the symptoms, and suggests experimenting with taking the Tamoxifen at various times of the day to see if it helps lessen my sleep disturbances and hot flashes at night. She completes a breast exam, on both sides, and confirms what the mammogram has already told us: that everything looks good, that there is no cancer. No cancer.

I take stock: since that first visit, the dark rush of fear and confusion has returned every so often, but something washes it away, stronger currents of change and determination, to live without letting the shroud of fear block the light, and to reach and strive for something better, follow the seasonal patterns of change and rebirth, seek the sun, bathe in the moon, and swim with the river.

There will always be the occasional fog that rises up from the river to obscure the light, the warmth, the way back to center. The fog, the dark, the forays into fear and beyond, all seem necessary to the journey. For without them, there would be less appreciation of the sunnier, lighter moments, and the resulting clarity would not seem so visceral and elegant if not contrasted by passage through the deep, shadowy rifts and chasms between pain and understanding.

Harrold and I take to the road and head for the hills. We are grateful for the unchanging systems of roads and navigable routes that lead us to our final destination, the ease of traffic, the opening of space and sky, and the unblinking slip of time that carries us back to our little harbor, safe port for my soul refugee. I sink into the deep, still waters, and for now, I am calm, as the phantoms flee the rising waters that refill my wells with light and love. For now, anyway, the fog has lifted.

* * * * *

Tuesday, October 7, 2008

Making Nice

For a few seconds the other day, this idea entered my thoughts: that perhaps I should, in a demonstration of good will, try to make amends, rid my cursed soul of its shame and guilt, and make nice.

(I wonder, though: If I were a guy, would I even think of doing this?)

But here it goes: I vowed to say ten nice things about Sarah Palin. It’s taken some time, but here it is.

1. My mother says she has beautiful eyes (and this, from a hard-core Obama devotee)
2. She has pluck.
3. She is far thicker-skinned than I.
4. She bestowed her children with far more interesting, original names than the standard US
fare. Bristol. Piper. Track. Willow. Trig.
5. She can laugh at herself, even with the volume off.
6. She knows how to charm (not me, but many).
7. She’s breathed new life into phrases that I haven’t heard since I was eight, watching the Andy Griffith show on the tiny black and white. “Betcha” and “doggone it” are destined to become the new “shawty” and “no-bitchassness.”
8. She’s a very good winker.
9. She’s impressively adept at disguising her raw ambition and quest for power in a blinding, display of stylized femininity and folksy ordinariness that has brought new shallowness to the anti-intellectual brigade…oh, gee, I’m starting to sound negative again. Let me try again. She, ah, wears glasses that look like mine! Yeah, that’s it! She has nice glasses!
10. Isn’t nine enough?

I feel so much better.

Sunday, October 5, 2008

The flip side, alas

Wow, did I get slammed for my bit about Palin and the banned books scenario. I've been sufficiently slapped upside the head, scolded like a bad girl, and read the riot act and so, have deleted the whole damn thing. This blog was never supposed to be anything that brought more stress into my life; to the contrary, it was meant to help me handle and process the mess that was coming my way, and after I was diagnosed with breast cancer and went through some very dark days I realized that I needed to find my voice, and so I suppose you could say that I brought this on myself. After all, my outspokenness and my writing have gotten me in trouble before. Perhaps this is what happens when we speak our mind, actually write down those thoughts that pester you in the wee hours of the morning, or say something controversial about someone controversial during a completely compelling and wiggy election season that gets everyone, myself included, all revved up.

I feel like an idiot, because I should have seen this coming. It was one thing to think that I could write about the Celtics--and actually, when I did, I received my first attack (for saying that Delante West looked like a "miscreant elf"), and others just didn't like it--but clearly, putting myself out there about the election and all it has brought up for me was crossing some kind of subtle line that I haven't quite figured out yet. I don't like it when people I don't know and who don't know me accuse me of being a bad person (among other things). I don't like feeling like a bad person, and unfortunately, I'm not very good at going to head to head with people I can't see, or simply letting these kind of comments wash over me.

I know some people get into blogging because they want to stir things up, fuel the fire, bring on the comments, the controversy. But I'm not much of a rabble-rouser, and I didn't get into blogging for those reasons at all. I was born under the sign of Libra, for goodness sake. I crave harmony and peace and balance. I don't like upset at all. And this blog? I started my blog as a way of trying to survive the terror that suddenly took up residence in my gut, to help me regain a sense of center and balance and peace, to better understand what was happening to me, and give friends and family an easier way to check in, walk with me for awhile.

All the negativity swirling about my bits on Palin nearly wrecks this whole thing for me. And yet, perhaps the problem arose because I was being so negative, and for that I am sorry. But sometimes things bubble up, and you have to unload it, else revisit it later, a forgotten, fermenting locked box in your dark depths.

I am tempted to delete the whole she-bang, with one click of the mouse (actually, two), because this process suddenly feels contaminated for me, and I am steeped in heartache at the thought of letting it all go. Perhaps this is the grand finale, the final step of the process, the ultimate demonstration of our impermanence here on earth: I felt pain and confusion and joy, I wrote, I posted, I wadded it all into a ball and threw it on the fire. Poof.

So, I ask you, if anyone out there is reading, and listening: what would you do? Start fresh? Retire early? Finish that bottle of Vicodin once and for all? Or, perhaps, more simply, persevere? There have been other times in my life when I have suspended my writing because of my own inability to recover well from criticism that felt heavy-handed and harsh: when I was told, as an eleven-year old girl, that I "hadn't suffered enough to be a writer," or when I sat in class after class listening to my fellow writing students at Williams rip apart my writing, and decided to take a break from the scrutiny, the glare, the judgment.

Perhaps I still have not suffered enough, perhaps I should give it up and return to the dull domesticity that could so quickly overtake my days, return the Flip Side to dust, and start making applesauce.

Or perhaps, I should simply stick to writing about my girls. After all, I'll soon have a new nipple, and there should be lots of amusing tales to tell...

Saturday, October 4, 2008

Choices Part II

Next week, I’ll have my first mammogram since my surgeries, and visit with my breast surgeon at Mass General to review the results. The possibility of recurrence has begun to seep into the forefront of my consciousness from the back vaults of my memory bank where I have tried to keep the fear at bay these past months, the dark, deep wells of terror rising up bit by bit to turn my brightly-colored optimism into shades of gray. I tell myself, everything will be okay. I push the fear back inside, tune out the jagged voices, fill my belly with breath and exhale the fear, but then, soon, it’s back, and the cycle starts all over again.

I remind myself that I have choices in how I deal with my fear, that I don’t have to let it consume me or even make my decisions for me, that I can live with it in a way that does not compromise the enjoyment I get out of life, that I can make peace with it and find a place for it where it will not define me. Cancer can be a most insidious terrorist, hiding out in your hills, plotting your demise, letting you live your lovely life until one day unleashing a torrent of terror that obliterates everything you’ve known, up-ending your world, and unseating your most precious freedoms: to live without fear, to feel safe, to wake up each morning and go to sleep each night knowing that your dreams will not turn to dust, the stars will keep you in their sight, and there is ample time for you yet.

I have been slowly realizing that these past several months—of waiting for and receiving my breast cancer diagnosis, of having to make many critical decisions around breast surgeons and plastic surgeons, hospitals, procedures, surgeries, and reconstruction, treatment and treatment facilities—have been about a lot of things, including having choices. And throughout this whole experience, I have been acutely aware of the fact that I have had the freedom to choose my care, my course of treatment, my doctors, and that it hasn’t always been that way for the untold women who came before me. My grandmother went in to the hospital to have a lumpectomy, and came out with a mastectomy. And she was probably one of the lucky ones. My gratitude abounds for having those choices, and for the decisions I have made around them, but I can only imagine what this diagnosis must have meant ten, twenty, thirty years ago. There have been so many advances made in early detection and treatment strategies that women with breast cancer today have many more choices than those who came before us.

When I got the call about the iffy mammogram, I was instructed to call the hospital to set up retakes and an ultrasound. The first choice was easy: show up for the appointment. Face the horrible possibility that the something the radiologist spotted might be cancer. Doing nothing was never an option. When it was clear that this cloudy spiral of dense tissue was not going to go away, the second round, too, became clear, albeit terrifying: biopsy the bugger. But I had my options: go in for a surgical excision or try first to have a stereotactic biopsy. I was forewarned that the stereotactic biopsy, a procedure which involves lying on your side uncomfortably for nearly an hour with your girl hanging through a cut-out in the table where she is summarily squeezed, clamped, and filmed in successive and, in my case, excessive mammograms in an attempt to extract, with a long, sharp needle, a small sample from the suspicious breast tissue, might not work, given the location of my cancer and the small size of my breasts. Small? Me? But it was worth a try. After 45 minutes and 8 mammograms, I told them to cut it out, stop, leave me alone already, enough was enough. It seemed that the trio of torturers—the general surgeon, the radiologist, and the nurse—had known from the get-go that it wasn’t going to fly, and that they were making a go of it for me, but I couldn’t take anymore. My neck had been wrenched sufficiently to render it aching and sore, and my poor left girl had been squeezed, exposed to way too much radiation, and left for dead. We scheduled the surgery for the next morning.

It wasn’t until I had gone through the surgery that I realized why they had wanted me to at least attempt for a stereotactic biopsy: surgery was, of course, a much bigger deal. There was the pre-op routine, for starters, which I had been through just two weeks before, when I had had a small lipoma removed from the inside of my left knee, when doctors and nurses buzzed about me, asking the same questions again and again, taking my vitals, thumping and poking my veins, checking in, going over, making sure. This time, I was alone, turning the bold, jagged face of fear and anticipation over so many times that I had rubbed it down into a smooth wisp of a stone. And there was the painful, bizarre needle localization procedure that I had to deal with before the surgery itself. Already in my undignified Johnny, I was wheeled down to the mammogram floor, trying not to show too much skin (oh, the irony!) on the way as I passed the usual hospital traffic: visitors bearing gifts and flowers, patients wide-eyed and tremulous in fear, the shuffling feet of doctors and nurses in their OR scrubs, and the parade of technicians, maintenance workers, and volunteers marching by.

The nurses all recognized me from my knee surgery—weren’t you just in here?—and before being wheeled in to the OR, one in particular, a sweet older woman who had been incredibly nice to me, told me that she didn’t want to see me in there again. It was her way of telling me that she hoped I would be just fine, that the biopsy would yield the 80% odds-on favorite outcome, that there was no cancer, just calcifications, say, and that it had all been a bad dream.When I received the wrenching news that cancer had somehow entered my life, spilling its mess onto my lap, I suddenly inherited a crash course in all things breast cancer, and a cavalcade of decisions that marched about, blasting horns of self-doubt and blowing the fear out of my belly, unremittingly in my head. Of course, I had to wait for the final pathology, an excruciatingly long, drawn out journey through the darkest tunnel with terror as my only companion, before I knew the full scope of what my choices might look like.

In so many ways, I was lucky. Because my cancer was caught early, and was small and non-aggressive meant that I had more choices than someone with a more advanced, aggressive form of cancer. These days, doctors will do their best to save a woman’s breast, sometimes performing three or four breast-conserving lumpectomies in an attempt to get clear margins while preserving as much breast tissue as possible. I know several women who have gone this route, only to be faced with the stark realization that mastectomy remains the only option to get rid of all the cancer and gain clear margins on all sides. But because of the location of the cancer, and the fact that my breasts were small (well, they still are small, to be certain), mastectomy seemed the most logical choice: take the left girl, expunge the cancer, and grow a new girl.

But it was never as easy as that. Choices like that never are.

However light and breezy I can make it sound now, it was excruciating. I cried and cried over the thought of losing my breast. I was deeply depressed about having to cut off this metaphoric and literal connection to my children. And I was scared to the bone about the surgery itself, what might happen, what I might feel and look like afterwards. In the thick of it, I considered where to have the surgery, whatever it might be. I could stick with the local surgeon, or head to a breast cancer center at a major Boston hospital. I could stay close to home, or venture outside my comfort zone, where the quality of care, treatment, and facilities might be superior.

During this time, I was still having problems with my left knee, the knee that had started this ridiculous parade of surgeries back in January, with a 15 minute surgery to remove a small, benign lipoma. 15 minutes of general anesthesia and supposed simple surgery had left me without feeling on the left side and front of my knee (the lipoma had been removed from the inside of the knee). Plus, I was experiencing tingling in my hands and left foot. After my mammo retakes, I made my way into the surgeon’s office to ask him about it. I could see his hackles go up, his defensiveness begin to sharpen his tone, his posture. It’s nothing I did. I’m positive it has nothing to do with the surgery. And yet, I told him, my knee felt just fine before the surgery. I told him that I was due to have a biopsy the next day, that I really didn’t want to be worrying about my knee right now. I asked him what he thought was going on, if he was so sure that it had nothing at all to do with the surgery. Oh, why, it could be a lot of things, he said, like MS. MS? Gee, thanks, just what I need to worry about.

My primary care physician wanted me to see a neurologist, get the brain and spine MRIs done, figure out what the heck was going on. So, while waiting for some news, any news, from the surgeon about the biopsy results, I spent hours trying to lie still on the MRI table, listening to the insane noise that echoed throughout the chamber and hammered through to my bones, the voices of the technicians telling me that I was doing great, that this would be the last one, that, after four, I was done, finally.

On the Monday following my own Black Friday—the day I got my cancer diagnosis—I met with my primary care physician to try to sort everything out. I learned that my brain MRI showed some questionable white spots, that I should let the neurologist explain everything. What did that mean, exactly? White spots? Does that mean MS? I was spinning. My doctor offered me a prescription for anti-depressants. Given everything you’re dealing with, they might be a good idea. I had had one trippy, uncomfortable experience with anti-depressants, and I wasn’t eager to revisit it. I needed to feel grounded, to feel everything that was happening to me, and not convolute it into some bizarre head trap that didn’t feel like me. I took the prescription, filled it, but the small plastic bottle sat on the shelf, next to massive bottle of Vicodin that the knee surgeon had prescribed, and that I had not dipped into.

It was all I could do to make it through those days without losing my shit, skyrocketing out of control, and spontaneously combusting. That gyroscope of intense, freak out fear, shock and confusion churned and burned so fast and hot that it took everything I had to hone in on my center, take one thing at a time, and continue to make good choices.

I met with the neurologist, who spent over an hour and a half testing me for various disorders, coming to the conclusion that while I did not have MS, I did have some mild, fairly common neurological disorder that explained my tremor, unexplained sleep disturbances, my penchant for sleep walking as a child, and the odd way my eyes seemed to flutter to a close. Hmmm. The white patches on the MRI, it turned out, were tiny, insignificant, and I was much relieved to be able to put MS out of my mind. But the neurologist left me with something else to chew on: his theory that my overblown post-surgical sensory nerve trauma might indicate an early sign of Charcot Marie Tooth Disease, an often insidious degenerative condition that I later learned could quickly lay waste to one’s ambulatory strength and imprison one in a wheelchair. Lovely. He offered a prescription for sleeping pills, and I did the math. Pain meds + anti-depressants + sleeping pills = the Heath Ledger effect. No thanks, I told him. I’ll figure it out.

I decided to put it out of my head. I needed to focus on the cancer. I had so many decisions to make, so much to learn and process, that there wasn’t any room for anything else. I would deal with these pesky doctors later. I figured the knee issue would have to resolve itself, that I had other, more pressing things to think about, that I had to somehow let it go, trust that the phantom fear would loosen its stranglehold on me and fly away.

But strangely, while considering my next move in my ongoing breast cancer saga, the knee continued to plague me, with nerve pain that would come and go suddenly and unexpectedly, crackling bolts of lightning that shot through the cloudy numbness that felt like water on the knee and made kneeling unbearable. Soon, I noticed a clicking sound and sensation on the outside of the knee that creaked like a rusty hinge whenever I extended my foot. My knee woke me up at night, screaming at me. Ironically, and conversely, the breast cancer was quiet. Deathly quiet. I felt no pain, no sickness, no weakness or fatigue; there was no discernable lump in my breast where the cancer was apparently lurking, furtively turning all those good citizen cells into miscreants; there was nothing I could feel that indicated I was sick at all, save for the dizzying, near blinding spells of exhaustion, brought on by the sheer weight of the rubberband ball of fear and indecision that stretched me, tangled and tight, and the sinking knowledge that everything was about to change, that there would be no going back.

So, I deliberated the decision as I do all decisions, weighing each side over and over again until one seemed a clear frontrunner. At odds, to dispense with the breast-conserving niceties, throw caution to the wind and go right for the gullet instead, have the mastectomy, and clear out the cancer on this, the second try, and be done with it, or, try to save my small, waning gibbous moonbeam of a breast, and risk not getting clear margins, again, and have to have a mastectomy anyway, after already dealing with the effects of two surgeries. To be or not to be, that was the question. As well, I had to make another choice: to have it all done locally, at our less than cutting edge hospital, where the nurses knew me and where I had already established a good relationship with the surgeon, or take the advice of trusted friends and fly the coop for greener skies, where I would be treated by the best breast docs on the planet.

Dr. Fox, the local surgeon, was excellent, but my experience with the knee guy, who had sportingly seeded my already overflowing head and heart with the idea that in addition to breast cancer, I just might be dealing with MS, too, left me weary and leery of returning to the site of mysterious complications.

Oddly enough, it seems like a no-brainer now, but it wasn’t until I had met with the breast surgeon at Mass General Hospital, Dr. Michele Specht, that I knew for certain that I wanted to have my treatment done at MGH, and that I wanted her to take care of me, perform a mastectomy on my left side, and get rid of the cancer. I also told her about the neurologist’s theory, just in case I had to worry about future surgeries upsetting my already broken down sensory nervous system. Charcot Marie Tooth disease? No, I’m pretty sure you don’t have that.

There have been additional decisions I've had to make: to have one side done or both, to go bigger or stay the same size, to get a nipple or not. And there will be more in the future. Each and every days churns out an endless succession of choices, some already made for us, some slightly out of reach, some slipping away as missed opportunities. It turns out that those early choices I made were good ones (Knock on wood). I’ve healed well, suffered no complications from the surgeries, and have continued to feel really good and clear about the people I chose to excise the cancer, rebuild my breast, body, and spirit, and help me best take care of myself as I deal with the obnoxious side effects of the Tamoxifen, the bewildering world of cancer prevention, and the lingering fear of recurrence.

But things can change on a dime, as I've learned, because change is what fuels the insistence that life be lived, so I revisit my gratitude as often as I can, tuck the fear back inside, and see that things are okay, that next week's appointment with the breast surgeon will go just fine, and my six month check ups herewith. It's really the only thing I can do: trust in my choices, without any looking back, so that I can live in the here and now, and know that those three little birds upon my doorstep wouldn't lead me astray.

But I wonder: what do people do who do not have the same resources that I do? The friends who can summon references and help and bring me to the best? The health insurance that assigns me a case worker who checks in every now and then just to make sure everything is okay? The family members, friends, and neighbors who have supported me throughout my darkest days? The wherewithal to not take things for granted, to do the research myself, to not be afraid of doctors, to advocate for the best care for myself, to push for choices, and not be at the mercy of any system, but rather feel empowered to blaze my own trail through this process of self-discovery and healing? What do people do without all of that? Their road map must be considerably smaller, and simpler. And maybe, the road ends rather abruptly for them.

Furthermore, who makes the call? Who is controlling the research money? Who gets to decide if we live or die, or live or die with dignity?

A woman’s life is rife with heartache and joy; I would like to think that every woman would have the freedom of choice that I’ve had, and the resources to make good choices within that structure of responsibility. But I know it’s not so. The Bush administration wants to redefine birth control as a form of abortion, the McCain/Palin ticket wants to make all forms of abortion illegal, even in the case of incest or rape, and in many places in the world, women do not have access to birth control or safe, legal abortions, basic education and health care, or protection from the unimaginable horrors of genocidal gang-rape, genital mutilation, and worse. It’s hard to think about what some women face, and the resiliency and strength their situations demand. My own experience with breast cancer pales with what many women have to deal with, and has ushered in a whole new perspective on just how precious our good health, relative safety, and hard-fought freedoms—to choose for ourselves who speaks for us and makes decisions in our name, who does what to our bodies, and how to best live with our choices—really are.