Know Thy Selves

Our Bodies, Our SelvesRemember when it was all the rage to sit on the floor of the campus gym sans pants, whip out your compact, and examine your vagina? No weewees, no woohoos, no girliebits; we were hot to call a vagina a vagina, and we were determined to get up close and personal enough to be on a first name basis. Our Bodies, Our Selves was the handbook, although I seem to remember the 70’s bearing a rather unbalanced focus on the Bodies half of the equation. Frankly, it was a whole lot easier to find a group of women ready to shed their clothes for Enlightenment than to find one who actually carried (or owned) an actual compact. Makeup was for sissy girls.

Women 1970's via ourbodiesourselves.orgWe were a Gung Ho sort, and even if we read our Sartre naked in the bathtub with a guy we’d met at the falafel house only an hour earlier, we were hungry to know it all, do it all, feel it all, read it all, live it all, conquer it all, save the world, free women from centuries of silence, get it out there, and live it real. We were ready and primed to Make Life Our Bitch. We all looked like Ali McGraw, and we were determined to be taken as seriously as Gloria Steinem. We brought womanhood, for a time, from darkness into light, and it all started with a fierce determination to know ourselves, vaginas and all.

When did we lose touch?

A year ago today I sat in my kitchen with a close friend that I see only twice a year. She was waiting for test results from a biopsy, which would be positive. I had cancer too but didn’t know it — didn’t suspect — and wouldn’t until much later that spring. When did we move from living our lives armed with mirrors and books and knowledge and experimentation to living our lives with long and mostly irrelevant To Do lists, blindfolded against our innermost secrets? When did answers become written in water, and taking care of Our Selves become a second fiddle melody? When did we move from Knowing to Not Knowing, because Knowing has become so damn hard?

Contrary to popular belief, Our Bodies Our Selves was not about sexual liberation, even though most of us seemed to read it that way. In fact, it was about women learning to care for their own health. Forty-ish years later, we pretty much take care of others instead.

We march; we speak out; we advocate for free mammograms; we rally; we sit with each other and shave our heads in sisterhood; we refuse to be talked down to; we have each other’s backs. But we still never quite know what’s inside us at any given moment — a sobering reminder to seize the day.

Cousin Cousine 1975In many ways, 18 was bliss, wasn’t it? Knowing our bodies was largely a pursuit of pleasure: learning to kiss, trying exotic new tastes from multicultural gems near college campuses, teaching our muscles to scale mountains on weekends with adventurous new friends, getting silly with markers or grimacing under tattoo needles. At 56, knowing my body means something else entirely, and mostly what it means is discovering how much of what I’ve learned to love is now on the list of things that I’m forced to un-love (exotic tastes and climbing mountains high on the list). Making peace with the woohoo was a hell of a lot easier than making peace with organs that mutate in silence, and oh, how much more fun!

And so these later days reprise that urge to know, deep down; to feel, deep down; to live, deep down. If there is no magic mirror to show me what monsters lurk inside or to predict which cures will simply kill me another way on another day, I need to be in tune enough with my spirit to hear the longings of the body I yearn to heal: feed me; love me; take me out dancing; sing me a song; let me spend the afternoon painting my body with daisies and then giggle loud and long enough to wake the neighbors; or linger in a field of wildflowers way past time for dinner. Feed me a daily moment of bliss. Or three.

P.S. Dedicated to Carol, Susan, the MoHos, Jeanne Beanie, Carol H, the Duke Forestry School, my Love, my family

Elephants and Ladders

Elephant and Elephant-Made Ladder, by PrajaktaPradhanAnd just like that, seven weeks have passed. Seven weeks that began as One, stumpingly segued to Four-and-a-Half, and curiously culminated as Seven-that-Felt-Like-Four. Tomorrow, Friday, October 12, marks my last day of radiation, and Saturday, 10/13 will be my first day without it. Again with the Lucky Number.

On my first radiation center visit, I argued with my husband in the car on the drive over and cried the rest of the way, then spent 45 minutes lying alone in a room on a CT table thinking about this: every day for the next seven weeks, I will be forced to wake up in the morning, acknowledge that I have cancer, and drive myself nine minutes down the road for treatment from strangers. The radiation part? No biggie. The acknowledgement part? Biggie.

And so it went that I drove myself alone for the first treatment on the first day and put myself in the hands of four strangers in gray scrubs who would become my morning companions for the next seven weeks of my life. I can’t tell you how much I’m going to miss them.

Years ago, after a particularly shaking experience with someone I cared about, I headed out the door for a walk. I was in a strange city and knew no one, with a map folded into my back pocket. After about 45 minutes of emotions-in-a-twist-staring-at-the-pavement under my mindlessly-moving feet, I looked up and across the narrow road straight into a tea room with its doors flung open to the day. Inside, a woman paused, looked out, and smiled at me. I smiled back. And in that instant, that moment-with-a-stranger, I was fine.

And this has been much like that.

I’ve always been fascinated by the connections we form in life. Some of the people I remember most vividly are those with whom I’ve spent the least time, but with the most intensity. Some taught me life lessons, some gave me a nudge back onto the path, others showed me new ways of being, some simply showed compassion — but almost consistently without a surplus of words — and often with no words at all. And then they were gone — but only — only — in a physical way. Those that impact us in times of need are with us forever.

And I think about this: it’s so easy to be kind. It’s so easy to give a nod, a smile, a touch. I count myself at the top of the list for too often being too afraid, too shy, too sure my words are cheesy or my interest suspect, and I need to change that.

And so to Rick, whose curls bounce every morning when he nods and his eyes twinkle hello: Thank You. To James, who fetched me gently from the waiting room alone on that first day and always tries to make me laugh: Thank You. To Betty, whose mega-watt smile and cheeriness always calm me: Thank You. To Will, who didn’t flinch when I sulked up to him on Day 1 and put my hand on his chest to turn over his name tag because I didn’t want to be treated by a man whose name I didn’t know, and who looked in my eyes to keep me steady: Thank You.

Thank you all for bringing me from this to this to this.

Breast Cancer Biopsy, Radiation Registration Lines, Almost Done

Breast Cancer Biopsy Bruise, Radiation Registration Lines, Almost Done

Oh! The title for this post was provided by my daughter, of Ashinine, quite randomly, with no knowledge of the post content. Ever a lover of Metaphors for Life, I’ll give you this: We are all at times large and clumsy, unaccustomed and often ill-equipped and, certainly in my case, articulate only in an alien-ish sort of way when we encounter the unexpected. Thank You All for being the Ladder to my Elephant, giving me something and often someone to hold on to, a leg up, access to a broader view, and a steady hand. I’ll never forget. Hugs and Kisses.

Presbyterian Radiation Oncology

Life: Not for the Squeamish

Tiny Flower, Pam Goode

Tiny Flower, Parking Lot, Presbyterian Cancer Center

I walk into my second radiation treatment behind a woman in a fun skirt made of vintage tablecloths, her round head sporting the new growth that looks like peach fuzz. An attendant in an orange shirt helps a blanket-wrapped man from the wheelchair into a waiting car. I see two other patients, both with walkers. The youth of my radiation techs looks good to me now, and the way Amanda’s face lights up when I finally notice she is pregnant and ask about the baby makes my morning. Outside of Amanda and maybe the cute young tech, I look to be the healthiest one here. I feel the need to help carry those who are dealing with so much more than I am, but it isn’t time — I don’t want to infringe.

They say radiation is a breeze, and so far it is, as long as you don’t stop to consider the deadly rays funneled into your body daily — those very rays we’re taught to fear and work to avoid. And as long as you don’t look around too much at the others sharing your journey.

Over the past few weeks, waiting for this day, I’ve dreaded the start of radiation because to me it meant this: thinking about cancer for an hour out of every 24 for seven weeks. Now, I know that it will mean this: hurting for every person I see here daily, and understanding that pretty much every one of them is facing a mountain far higher than mine. I am so lucky. Why?

I hope this is the only time in my life that I’m given free and preferred parking. The woman who chose the space next to me sat in a battered once-red car with her hand to her head and the windows down. She didn’t look up when I eased into my car. It was 10:13. Of course it was — it’s my lucky number.

Cancer is not the hardest time I’ve faced. Watching my mother die and trying to steady my father each day as his mind fades top the list. Dealing with pain I’ve caused others is a close second. These passages are agonies. Cancer is a wrench in your life-clock, a rewriting of plans, an upending and introspective re-centering. In a way, it is death and rebirth without the dying.

I don’t know why I have cancer, and I don’t know what cancer wants from me. I know we don’t need more suffering; we are overrun with suffering. Maybe we simply need another voice. Do we? With cancer claiming an ever-increasing percentage of the population, surely the numbers begin to blur. But I can be a voice. I can see beauty and celebrate with awe and I can create, after a fashion. This daily dose of hard-awareness will fuel me, once I release my grip on the melancholia of it all.

We are born into this life fairly fearless, but our willingness to grasp the new is fleeting. More and more I realize that fearlessness only returns to us after we open our eyes and drink in the realities, both good and bad, that surround us. Awareness and action: my two new friends.

Dear Cancer, I Am Not Alone, Part 2

Surgery-Day Post Redux, updated with images that have come in during the past week. The June 29 post was seen by 5 times the number of people who usually check out my blog, and more than twice as many who visited this blog on my best day ever. How many of these visitors actually know me? A fraction. How many hate cancer? Every single one of them.

After a week of rest followed by a great pathology report, tissues are healing and the mood in our house is MUCH lighter. Still treatments to follow, as well as many slow days of trying to find my way again. But make no mistake: science is a wonder and I wouldn’t walk this path without it, but love — even the love of strangers who support us with a smile or a hand or a photograph or a word or prayer or thought or mention of our name or even an acknowledgement that we are all on this path of life together — love in every form from the fieriest passion to the innocence of children in the surf to the gift of human affirmation — love is a damn strong tonic.

This journal is a seed, and these photographs a fledgling reinforcement that we are one in wonderful ways. I’ll keep adding pics from any who send them in the process of building a network for any who need it at any time for any reason anywhere in the world. Cause this love ain’t just me babe — it’s for all of us. Just click on the first image for a really nice slide show.

Today is the day they slice you out of me, you and all of your little scouts and parasites, you with your wily ways, greedy fingers, silent chewing, your poison, your hate. You are not me. I am not you. I will not be you. You’re outta here, and you’re not coming back. And I am not alone.

Many thanks to the fabulous friends, friends of friends, role models, ass kickers, lovers, survivors and supporters for these funny, touching, inspirational photographs. I love you all!!!

Dear Cancer, I Am Not Alone

Today is the day they slice you out of me, you and all of your little scouts and parasites, you with your wily ways, greedy fingers, silent chewing, your poison, your hate. You are not me. I am not you. I will not be you. You’re outta here, and you’re not coming back. And I am not alone.

Many thanks to the fabulous friends, friends of friends, role models, ass kickers, lovers, survivors and supporters for these funny, touching, inspirational photographs. I love you all!!!

Matrix

Matrix, Photo howtogeek.com

I can’t stop the numbers. They trill down my field of vision — awake, asleep, involved or staring into space, alone or with the ones I love. I’m not even certain if I’m seeing real numbers spewed like actuary tables of my years left on the planet, or colors like I’ll use to paint the remaining days, or simply a disconnect, as if all the trains are leaving the station at once and I can’t read the numbers fast enough to know which handle to grab for hoisting myself onto this ride.

Even though I love a metaphor, and this one certainly fits, I hate the numbers. I’m not given to panic attacks, but even in the heart of my quiet moments, I find myself not breathing, or breathing too much, or stopped in my tracks wondering how to breathe, and of course I blame this all on the numbers.

I am awash with numbers. Statistics, probabilities, centimeters, directions, weights and measurements, years, months, days, recovery times, usable hours in a day, fractions for dividing available time into necessary tasks, blueprints for the time I have left. I’m not a numbers girl, and I want them to go away.

As days go, I’ve been a little better lately — more time with family and a few friends, more emails answered and a more manageable pile of things left undone. And I’ve been a little worse — more in need of two bodies that will pin me between them on the sofa in the evenings, laughing at nothing and making sure I stay upright and intact. For every bit of normal-ness I wear in a day, I carry three times the weight of embryonic panic.

And so I stare a lot more now, looking for that steady place in my soul that keeps me still. Trying to find the balance in breath, which is shockingly difficult when you’re off kilter. Trying to live the truth that what’s “important” will vary on a daily (hourly) basis, and that it doesn’t matter if others don’t understand.

In a former life a coworker said, “Every time I look over, she’s just staring out the window,” and another said, “She’s not just staring, she’s designing — that’s how they do it.” And I hope (and believe, in a very small way just now) that I’m designing. I hope that my staring and breathing is giving (new) life to the balance of my days. I hope soon the numbers will stop and the design will begin to make sense in a way that I can recognize and welcome and begin to play with like fingerpaints, when everything is possible and there are no lines or graphs to fit into.

But for now, there are still the running, screaming numbers. Surgery in nine days. Anticipated one week recovery. Anticipated three to four weeks healing. Hoped-for one week balloon radiation; otherwise five – seven weeks of daily radiation. Five years (1,825 days) taking an estrogen-sucking drug (“If you want to live,” said doctor #1) or (“Your choice,” said doctor #2).

And Poof! Over. Done with. On with your life.

But I will never be the same. And it will take a lot of staring and holding and breathing to get me to the next place.