Category Archives: Breast Cancer Treatment

after

11 Thursday Nov 2021

Posted by in Breast Cancer Treatment, Cancer Language, Depression, Language matters, Memoir, Mental Health, Northern Ireland, Ordinary Things, World Mental Health Day 2013

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You. Have. Cancer.

Like an unexpected snow, the pronouncement fell from her lips. I cried as though I had just found out that someone dear to me had died. Inconsolable at first, I assumed those great fat tears flowed from the sheer fright of a disease that has no cure. A decade later, I know my sorrow was more about wondering how to proceed toward the half-century mark without the woman I used to be. Oddly, nobody else seemed to notice she had vanished. Not even the person who delivered the news to me in much the same way as my mother might give me a ring to tell me that a childhood friend or a distant relative has died – reverent, hushed, kindly.

If I close my eyes, I can just discern the shadow of my former self standing up and walking out the door, offended by the nice Breast Cancer Navigator informing my husband and me that I had cancer. Me? With cancer?

She spoke in a quiet conspiratorial whisper, the way we quietly speculate about the cause of a death when all the evidence points to hard living. On and on she talked, as if trying to soothe us even as she filled our ears with fear. So many scary words.  Then with a brusque not-to-worry she stressed that what we were hearing that day in her dimly lit office was not a death sentence.

Not really.

Later, I would Google something by somebody who said cancer was a blessing that had bestowed her with the gift of two distinct lives – the one before cancer and the one forever changed by the diagnosis. She said the second life would be much better than the first. I cannot say life post-diagnosis has been or is better – it is just different.

For me and the woman I used to be, cancer became the scariest thing in my life, because, like every scary thing that actually happens, it had never crossed my mind. I still waste precious minutes fretting over things that most likely will never happen. But cancer did happen, and I remember wanting everyone to feel as sorry for me as I did for myself and howl about the unfairness of it all. I wanted a no-holds-barred pity party. I could not have predicted the impact of the let-down, placated by people I considered  friends who said I had nothing to worry about, my being so strong and someone to whom God would give only as much as I could handle and nothing more. I was told I should be thankful because I had the “good cancer.” I was on the pig’s back, beyond lucky to be the beneficiary of what they deemed a fine consolation prize, a veritable bonus – the boob job following the amputation of the right breast I wish I still had. I was even congratulated on still looking like myself – you’d never know you had cancer –  and five minutes later chided by someone who barely knew me when she found out I was not “doing chemo” as if it were something akin to laundry or a pile of dishes or sit-ups. There was the woman who told me to just get on with it and “put my big girl pants on,” with a nod to God because, you know, I could handle what He had given me. There were others who fled, afraid to utter the C word in my presence. I made excuses for them, guilty that I made them uncomfortable, showing up in the world every day, reminding them that cancer gets people like the person I used to be, people like them.

Thus a kind of dance with cancer – if I don’t mention it, they won’t mention it, and maybe it will go away. Or maybe it won’t, and then what? Will we swallow the words we are too scared to say and instead spit out cliches about doing battle and platitudes about the power of positive thinking? It’s trickier, I suspect, to ignore the recurrence of cancer, to feign indifference to it, once it has been roused from its slumber.

It’s difficult. All of it. For everyone involved.  In those weeks following diagnosis, I could have been kinder to those who showed up for me, even if they didn’t know what to say or do. They showed up. They held me up with  love – unconditional and fierce – my daughter, my late husband, my best friends, my family near and far. Consumed with fear and bitterness, I know I was hard to handle.  I know I didn’t thank them enough. My cancer changed their lives too.

Life is just less certain, following cancer. Often, I find myself holding my breath, a tiny bit afraid of what might be around the corner. The roller-coaster cliche still does the job. You know the refrain.

First, the arduous climb towards an intense blue sky, the anxious chatter and nervous giggling subsiding all around you. At the top, breath suspended, you wait for the world to fall out beneath you. Not yet. Next, a sudden plunge at shocking speed. Might you plummet to your death? Not yet. There are more unpredictable twists and turns to come, above and below. White-knuckled, clinging to the bar, you only half-believe there is enough life in the clickety-clacking, old machinery to set you back on solid ground. Suddenly it’s over. You are free to return to the midway, albeit a little green around the gills and unsteady on your feet. As he helps you out of the car, the weather-beaten carnie winks. Only he knows you aren’t as confident as you used to be.

Remembering my first time on The Big Dipper at Barry’s in Portrush, I close my eyes to better see myself once more hurtling through the North Atlantic air. Young and carefree, curls the color of a new penny wild in the wind, mouth agape, my eyes squeezed to block out light and noise and fear, I am half-hoping to stay aloft forever because ‘coming down is the hardest thing.’

Landing safely, startled to find myself somewhere between Tom Petty and the Heartbreakers “Learning to Fly” and Robert Frost’s lovely “Birches.” I’m back where I belong.

“I’d like to get away from earth awhile
And then come back to it and begin over.
May no fate willfully misunderstand me
And half grant what I wish and snatch me away
Not to return. Earth’s the right place for love:
I don’t know where it’s likely to go better.
I’d like to go by climbing a birch tree,
And climb black branches up a snow-white trunk
Toward heaven, till the tree could bear no more,
But dipped its top and set me down again.
That would be good both going and coming back.
One could do worse than be a swinger of birches.”

I don’t know where it’s likely to go better. 

I don’t know if the cancer will return. For now, there is no evidence of it. You see, no matter what they tell you, there’s no such thing as closure.  It’s a word I avoid and a concept I cannot consider without recalling the first time I realized how much it mattered to other people, in particular, a school principal who, following her observation of a lesson I had taught, indicated with grave disappointment, that I had provided “no closure” for my students. I didn’t bother arguing with her because I knew I would be back in my classroom the next day and the next – to continue – not to close – with my students.

Continuance – it has a nice ring to it.

Keep on keeping on.

The work of a November. . .

11 Monday Nov 2019

Posted by in Act Two, Amputation, Breast Cancer Advocacy, Breast Cancer Treatment, Breast Reconstruction, Cancer Language, david bowie, Diagnosis, Glenn Frey, Language matters, Mastectomy, Memoir, Milestones

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We end the set with what has become one of our songs. I make a joke about how I only sing in C. My love knows that’s not true, but he humors me because he knows I panic if he says it’s in A minor. Without saying it aloud, I remind him not to sing my verse. You know the one, the one about most Novembers and why they make me cry.  I’m possessive about “Goodbye,” Steve Earle’s “ninth step in the key of C” – a sober song for anyone who has ever been to hell  – and back – for anyone who is sorry for the harm they caused even when they don’t remember causing it; it is a song for November.

Eight years ago, on a too-bright November morning, I was diagnosed with Stage II invasive breast cancer. I am loathe to declare the November date  a “cancerversary,” one of those cheery-sounding sniglets used to mark milestones in cancer country. The scars on this body that carries me from one moment to the next are daily and unavoidable reminders of that Halloween morning when I discovered the lump and the afternoon thereafter when an earnest young doctor, a stranger, delivered my diagnosis.  For cancer patients, there are plenty of these milestones – the date of a surgery undertaken to remove tumors or breasts or pieces of a lung; the completion of radiation or chemotherapy; the momentous day, five years after diagnosis, when a kindly oncologist will make the pronouncement of NED – No Evidence of Disease; and the day we dread most – discovery of metastasis.

Maybe it’s because there are no right words to respond to cancer, that we invent others to minimize and manage its havoc, to shelter us from it or make us smile through the illusion of it even as it terrifies us. And, make no mistake; we are terrified.

Me with Sherman Alexie

Filed away is an imperative from novelist, Sherman Alexie who once told an audience of writers that they “must share the scariest things about their lives.” Intrigued, I bought a ticket to hear him speak at the Heard Museum in Phoenix, bearing in mind advice he had given elsewhere: “Don’t lose the sense of awe you feel whenever you meet one of your favorite writers. However, don’t confuse any writer’s talent with his or her worth as a human being. Those two qualities are not necessarily related.” Accompanying me was my daughter, at the time a junior high student immersed in the words and drawings of Alexi’s Absolutely True Diary of a Part-Time Indian. ALong with everyone else, we laughed conspiratorially as he shared what were surely the scariest things about his early years on the Spokane Indian Reserve.  Describing his father’s booze of choice,”Squodka” – a mix of Squirt soda and vodka – Alexie’s cheery nonchalance belied, I imagine, the anguish of a young boy confronting the reality of an alcoholic father who would disappear for days at a time. He knows, I know, that alcoholism on the rez  is no laughing matter.

Nor is cancer. It is a serious disease deserving of serious words, but we do a lousy job of talking about it in a way that conveys its reality or leads us to knowing what causes it or how to prevent it. So we rely on codes invented to keep this scariest of things at a safe distance. Code is acceptable in the cancer conversation and not just in the pink stuff of Breast Cancer Awareness Month – “save the boobies” fare.  “Mastectomy,” code for “amputation,” causes me to wonder if I were an amputee in the “traditional” sense, if I would ever refer to the day I lost a limb as my “ampuversary.” I think not.

The truth is that in the mythology of cancer, medical euphemisms abound. Myself, I have bandied about “lumpectomy” as though it is the thing we do to remove an inconsequential wart. In reality, it is a partial amputation. When I was first diagnosed, I presumed a lumpectomy was in the cards for me. As a word, it didn’t pack much of a punch, so it didn’t frighten me.  Then I met the surgeon who pointed out that my cancer was not amenable to lumpectomy given its proximity to the nipple and the fact that I was not endowed with large breasts.  Essentially, she didn’t have enough to work with; therefore, the surgery to remove my breast and reconstruct it would be trickier than the “simple” lumpectomy I had anticipated. As her meticulous notes would later confirm, “dissection was very difficult given the very small circumareolar incision used for the skin-sparing mastectomy.” It would require additional time and effort, not to mention skill and patience. So she recommended – and I nodded sagely as though I knew what she was talking about – a skin-sparing mastectomy which entailed removing only the skin of the nipple, areola, and the original biopsy scar to create an opening – a small opening – through which she would remove the breast tissue. Duly spared – spared, no less – the skin would then accommodate a reconstruction using my own tissue. Simple.

Perusing the details of my surgery, you would be forgiven for dismissing  the removal of a breast as painless. At times it sounds regal, befitting a fanfare of trumpets for that climactic moment when my breast tissue was “elevated off the pectoralis and delivered from the wound.”

While three surgeons operated on me, my then-alive husband and our girl waited in a waiting room where a set of paintings of the desert at dusk hung on the walls. It would have been about ten o’clock in the morning when my surgeon came out to find my weary, tiny family leaning on each other , waiting for the announcement she would later document, that “the frozen section was negative for metastatic disease.” There were no abnormal nodes and no further dissection was necessary.  Celebrating, she and my husband performed a silent high-five in the hospital hallway. Three hours later, having removed all the cancer she could see, she went about her day, leaving me in the capable hands of two highly sought after plastic surgeons, one being one of the best in Phoenix, the other a master of DIEP flap reconstruction, who had flown in the previous evening from Texas. When I eventually emerged from the ICU, high on Dilaudid, they say I told the young nurse on duty to pretend I was Madonna. Before I went home, she shampooed my hair.

In surgery, they worked on me for the next six hours, and two days later released me back to my life. Eight years later, I am told I look just like myself. You would never know, unless you asked to see, or I summoned the courage to show you, that I really don’t look like myself. Not my original self. Hidden under my clothes, is a trivial but nonetheless relocated belly button, its circumference now dotted with tiny white scars. Below it, a thin crooked scar, faded to white, stretches from hip to hip, with ‘dog-eared’ reminders on either end where JP drains pulled excess bloody fluid for several days after the surgery. I have a right breast too. Sort of. It is in the shape of a breast, impressively so, now that all the post-surgical swelling and discoloration has gone. Its skin is the same, spared by the mastectomy that removed its cancerous tissue through a very small incision around the areola also removed with its nipple.

As a rule, I tend not to dwell on the macabre, but I sometimes find myself obsessing about my old right breast, now a mastectomy specimen preserved in a container of formaldehyde solution. It weighed 294 grams, “the words expressly are ‘a pound of flesh.'”

Contemplating all that has happened in the past eight years – the cancer, the plunge into widowhood two Novembers later, the shift in priorities – I hear my mother say, in the parlance of home, that I have “come through the mill.” Lest I wallow too much, somebody will always be there to point out that things could be worse.

One evening, shortly after the death of my husband, I bumped into a former colleague. He hadn’t seen me for a few years but had still kept up with my professional exploits. Standing in the produce department at Safeway, he tendered his condolences and then wondered aloud if I had ever read Joan Didion’s Year of Magical Thinking. Of course I have. Several times. I know great chunks of it by heart.  It is an exquisite study of loss that blows open my heart. And then he said to me, “Well, at least your daughter didn’t die.”

At least your daughter didn’t die. 

The sentence hung in the space between us for too long. I don’t remember what I said. Something perhaps. Probably nothing. I know I scrambled internally to excuse him as someone who had never lost anyone that mattered much to him. I know I also hated him.

At least your daughter didn’t die.  

No. She is right here. Just 21 years old and beautiful, tough without being hard, unmoored without the man who was her first word and who took her for ice cream to a Dairy Queen, since demolished, on Fridays after school. She learned to drive his Jeep without him and she strode across the stage to receive her high school diploma without his cheers ringing in her ears. He would have liked that they used the Talking Heads for the graduation processional – “This Must Be the Place.” He would have tapped his feet and winked at me and brushed away a tear, because by then, he would have grown sentimental – all the more if he’d had any inkling of the milestones on her horizon. She would earn her first paycheck without the ready winks and smiles that had always encouraged her to keep being great at being herself regardless of the bullshit that comes with a part-time job in retail. In spite of her trouble with math, she is navigating her way through the degree program that will allow her to one day work with teenagers who are lost without their parents.  She is lovely, reminding me sometimes of the kind of bird that only flies in a faraway place.  Exotic. Rare. Endangered.

On one of the anniversaries of his death that November morning when we were far from our home, she told me it was beyond her grasp that one day it would be ten years, twenty years, forty years, since her dad last held her hand in the frozen food section of the grocery store – to keep her warm.

At least my daughter didn’t die.

I still don’t have the words to hand to the man who asked me about Joan Didion’s book. I wanted to tell him I couldn’t remember if I’d said Goodbye to my husband, if he’d heard me say it before my cellphone died the way it always does because I never remember to charge it.  I wanted to tell him the last conversation our little family had was a transatlantic phone call – my daughter and I on top of the Titanic museum in a foggy Belfast, my husband in our Phoenix living room, all of us unaware it would be the last time we talked and laughed together.  I didn’t. Instead, I reminded myself of  Lou Reed reminding me of magic and loss and of Sherman Alexie lighting up the Heard Museum with a coping strategy for those times when we despair at the lack of compassion in the world. Remember, he had said, “the world gave us Hitler – but it also gave us Springsteen.”

The world gave us Bruce Springsteen.

And Prince. And Dolores O’Riordan. And Tom Petty. And Donald Trump.  And Steve Earle, sorry for all the lonely nights he put her through, for not remembering if he said goodbye. And all the people who say the wrong thing at the wrong time. We just have to find the sweet spot in which to live and die.

Magical thinking . . .

How shall I mark this day?

I will climb again to the summit of Piestewa Peak in the Phoenix Mountain Preserve. It has been almost a year since I stood there, arms akimbo, high up and far away. I have missed it up there, looking down and romanticizing the sprawl glittering below me. I think I’ll go back and wonder the way I do up there about Wordsworth when he first stopped to consider the view. It’s ’emotion recollected in tranquility. ‘ It’s just an illusion.

Composed upon Westminster Bridge, September 3, 1802

Earth has not anything to show more fair:
Dull would he be of soul who could pass by
A sight so touching in its majesty;
This City now doth, like a garment, wear
The beauty of the morning; silent, bare,
Ships, towers, domes, theatres, and temples lie
Open unto the fields, and to the sky;
All bright and glittering in the smokeless air.
Never did sun more beautifully steep
In his first splendour, valley, rock, or hill;
Ne’er saw I, never felt, a calm so deep!
The river glideth at his own sweet will:
Dear God! the very houses seem asleep;
And all that mighty heart is lying still!

IMG_1765

A mastectomy by any other name . . .

17 Thursday Oct 2019

Posted by in Art, Awesome Women, Breast Cancer Treatment, Breast Reconstruction, Culture of breast cancer, Feminism, Kellys Cellars, Mammograms, Mother Daughter Relationship, Nipple Tattoo, P.INK DAY 2013, Pink Ribbon Culture, Pink Ribbons, Pinkwashing, Sexism, Shopping, Themes of childhood, Tina Fey, Writers

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© by Sheila Dee

© drawing by sheila dee (friend, colleague, my artist on demand with five fabulous tattoos of her own design)

NOTE: A version of this post appeared on October 20, 2013, as Breast Cancer Awareness Month was winding down. The pictures on this post offended someone so much that she or he reported them to Facebook and asked to have them removed. And I thought the cancer was the offensive thing. The story that follows is mine. I chose to share it. I make no apology. I did not choose the cancer that inspired its telling. 

I don’t remember when tattoos became mainstream, only that I was late to the party. I had never considered a tattoo for myself mainly because of its permanence, the very thing that others find appealing. For the longest time, my mother, the Queen of England, and I were probably the only women on the planet without ink. Then one day, I woke up and everybody was doing it.The British Prime Minister’s wife had a dolphin inked on her ankle, then Susan Sarandon got one, another one and then Dame Helen Mirren got one on her left hand, a reminder, the doyenne of British drama had told the Daily Mail, to love thy neighbor. In a twinkling, tattoos were as ubiquitous as Tupperware, and tattoo parlors no longer at the dark end of the street in the dodgy part of town. On every corner, it seemed, there was either a Starbucks or a tattoo shop; coincidentally, most folks patronizing the latter were adorned with fascinating body art. An avid people-watcher, staring at all that ink on display helped me pass time while waiting for my latte. But just as I was beginning to appreciate the artistry involved, the complexity of the designs, and the inspiration behind them, I became aware of the burgeoning tattoo removal business. Right next to the hardware store, across the street from my local Starbucks, popped up such a place, aptly named Delete. I suppose it makes sense; as the erudite CEO of Dr. Tattoff, explains, “what happens is life changes and that [tattoo] may not represent who you are anymore.” Like high-waisted mom jeans and over-sized plaid jackets with shoulder pads and really big hair, I suppose. Except all three appear to be making a comeback which makes me wonder if those responsible for setting fashion trends have run out of ideas . . .

I like to think I have a few good ideas left in me and that my life is still peopled with bold, brainy, beautiful women from all generations. There are those in their sixties and seventies, to whom I turn for stories of the way we were or should have been and what we wore and why the hell we are still making so many compromises. Settling. There are the women who went to college with me in Belfast all those years ago, fiery and full of fun, now approaching sixty – sixty – as their daughters and sons head off to make their own marks on the world. In one dizzying instant, the girls with whom I played hopscotch are grandmothers, while I am the only one with a child who just turned 21. Then there are the younger women I encounter mostly in the world of work, some barely 30, infinitely more assured and a lot smarter than I was at the same age, dipping their toes in the education business – a profession that has not lived up to their expectations – wondering if they should take it and make it better, or just leave it.

Within this circle of women, I drew the short straw as the 1 in 8  none of us expected to get cancer, the one in reasonably good shape depending on the eye of the beholder, the one with no family history and clear mammograms. It chills me to know I will not be the only woman in this international circle to be struck by cancer. At the same time, it emboldens me to know we are writing about it, complaining about it – out loud – stomping out those myths and taboos that have for too long duped us within a flourishing breast cancer industry of which we are all aware this month.  Some of them sport at least one tattoo, an inky celebration of something significant to them. Perhaps it is discretely placed on some part of their bodies rarely seen during the work day. A Celtic knot, a Japanese symbol, a butterfly, a dragonfly, a line of poetry or perhaps the initials of names of someone held dear.johnny-depp-wino-forever This last invariably bringing to mind Johnny Depp’s “Wino Forever” tattoo, which prior to a soured relationship with his then-famous fiancee, was “Winona Forever.” This must be true; I read it in People magazine one afternoon while having a pedicure.  A fine example of turning lemons into lemonade and an excuse for including here a picture of the dreamy Mr. Depp.

Some of these tattoos, I will notice entirely by accident, especially those that appear in my professional life. Occasionally an otherwise hidden piece of body art, an exotic bird perhaps, peeks out from behind an errant bra strap or at the nape of the neck of a tired dentist when she scrapes her hot hair up into a ponytail. Once, I spotted an over-sized bandaid on the slender ankle of my daughter’s 2nd grade teacher at a parent-teacher conference. I had assumed this was to camouflage a nick sustained during a hasty shaving of the legs, but some time later, however, the ankle had healed, its bandaid peeled off to reveal a rotund Disney cartoon character with an attitude, home-made and done on a drunken dare by a bouncer in a Los Angeles bar.  I haven’t seen her for years, but that tattoo is indelible in my memory, the kind of thing Tina Fey alludes to in her Mother’s Prayer for her Child in Bossy Pants:

First, Lord: No tattoos. May neither Chinese symbol for truth nor Winnie-the-Pooh holding the FSU logo stain her tender haunches.

My own issues with permanence notwithstanding, there are other reasons why I am resistant to tattoos. When I was a girl, a tattoo was neither a fashion accessory nor an objet d’art. Early on, it was an annual ceremony involving pipes and drums, broadcast on the BBC to a global audience – the annual Edinburgh Military Tattoo. Eventually, my view of the tattoo expanded to include those designs inked on a human canvas. But far from mainstream, the tattooed boys of my youth were typically stigmatized, viewed from afar as having been up to no good, an unsavory bunch, degenerate, even.  Their tattoos were mostly of the home-made variety, crude and completed on a boring, wet Saturday afternoon when there was nothing else to do, usually by someone who could spell with a safety pin disinfected in Dettol and the obligatory bottle of Quink ink. I remember the quiet girl with mousey hair and freckles, her pale teenage knuckles incongruously spelling out a shaky L.O.V.E. in indigo.

I also recall being in Kellys Cellars in Belfast one afternoon in 1984 where I encountered an interesting – albeit confused – person with UDA tattooed on his left forearm, and IRA on the right.  The only other people with tattoos -(Union Jacks, anchors, daggers, or a combination of all three) were the young men who spent interminable hours leaning against the wall outside the bookies, out of work and, by all accounts, most always out of luck. In truth, these lads were far less menacing than they were emblematic of Northern Ireland’s economic reality in the 1980s and our destiny if we didn’t “keep at the studying.”

Within all this tattoo talk is my own story that will likely offend someone perhaps in the way 50 year old Inga Duncan Thornell’s post mastectomy tattoo caused Facebook to repeatedly remove a picture of it in 2013.

by Tina Bafaro

photograph by Tina Bafaro from the book: “Bodies of Subversion: A Secret History of Women and Tattoos

It is one of those “a-funny-thing-happened-on-the way-to-the-end-of-my-breast-reconstruction” kind of story. As I have said ad nauseum, a diagnosis of breast cancer changes everything. Words and relationships take on new colors, different things matter more and less, and what used to be irrelevant may become almost mandatory – like kale. I hate kale. Blueberries. Exercise. A tattoo. A tattoo. The thing I would never have considered. I’m drawn back to the day the best breast cancer surgeon in the universe, Dr. Linda Liu, told me there was no way she would risk not getting clear margins by preserving the nipple of my right breast. It is important to note that at the time, I knew nothing about margins other than how to set them in a Word document. I remember well how she turned her body away from the MRI picture on the screen, folded her arms, and looked right at me to tell me that given the location of the tumor and the smallness of my breasts, it would be horribly disfiguring if she tried to remove the tumor via lumpectomy in order to spare the nipple. Basically, she didn’t have a lot to work with. So she recommended – and I nodded sagely in agreement – a skin-sparing mastectomy which entailed removing only the skin of the nipple, areola, and the original biopsy scar to create an opening through which she would remove the breast tissue. Duly spared, the skin would then accommodate a reconstruction using my own tissue. I didn’t want implants. Along with tattoos, I have a reticence about implants.

I was fascinated by the MRI pictures and began to understand why it would have been possible for mammograms to miss so spectacularly the cancer that had been growing gradually for who-really-knows-how-long – five, ten fifteen years? In the course of a long conversation, I grew increasingly comfortable with and confident in this surgeon. I liked her. We talked about the mastectomy which would happen after the Christmas holidays, which seemed an eternity away, along with a DIEP flap reconstruction which would ensure I woke up after an 8 hour marathon surgery with a new right breast. Sans nipple. Maybe we talked about that. I don’t remember, nor did I have the sense to bring anyone along to listen. Nipples are not really standard conversational fare, except in the inane chatter on Entertainment Tonight, Inside Edition, and television shows of that ilk, and only, apparently, if the nipple in question belongs to Madonna or Janet Jackson or the lead singer of Maroon 5 that had been exposed accidentally and on purpose to audiences all over the world via Youtube.  For me, “nipple” is a frivolous word, the kind that might belong in a limerick, perhaps to rhyme with “Raspberry Ripple,” an ice-cream flavor from my childhood. “Nipple” lacks the gravitas of “malignancy” and other scary cancer words. “Areola” is not a necessarily serious word either, but it evokes a kind of elegance, like a constellation of stars.

Thus my mind wandered, as my patient surgeon described the mastectomy, the removal of My Right Breast, which by that stage, I swear to God, had become the third person in the room. As the information washed over me, much of it technical, I feigned the role of the empowered patient and asked a few sensible questions, the answers to which I would immediately forget.  How long will the surgery would take? How much will it hurt? Will there be lots of Dilaudid available?  Will I need radiation? Will I need chemotherapy? When will I be able to start running again?  It didn’t occur to me to ask about a nipple. A nipple for God’s sake.

Time passed. Slowly. My little trio of a family survived Thanksgiving, Christmas, and the New Year with me in a surreal denial of the following truths:

  1. I had invasive breast cancer.
  2. I had been married for 21 years. Twenty-one. A lifetime.
  3. My baby girl was turning 14.

I wish now that we had expended less energy on the damn cancer and focused instead on a touch of bling for a 21st wedding anniversary – knowing we would only have another year together – or a 14th birthday party for our only daughter, but learning the rules of engagement takes time. And we were frightened. Time spent waiting for surgery passes very slowly. Then not slowly at all, and in a twinkling, the woman looking back at me in the mirror bore a wretched scar that stretched from left hip to right, a repositioned belly button, and a perfectly reconstructed right breast, small like its partner on the left, but instead of a nipple, there was its absence. This should not have been a shock. I knew it was going to happen. I knew that around where it used to be would be a large circle, through which the nipple, the areola, and the right breast had been removed. (See skin-sparing mastectomy above).  Removed. Cut out. Excised. Severed. Amputated. And other scary words.

IMG_1323 Not pretty enough? No. Nor for me. This was not the free boob job some people had told me I was so lucky to get. Let me repeat – a mastectomy is NOT  a boob job. If there had been some way to avoid seeing the crude circle of a scar that defined the space through which my breast etcetera had been removed, then perhaps I could have avoided thinking about the cancer. But after every shower, every day, I took a trip down memory lane. Not without some guilt. It is only a nipple, I know, and in the grand scheme of life, it’s a minor detail. The major detail is that my brilliant, funny, warm, physician removed all the cancer she could find; she found the best plastic surgeons to do the reconstruction, and I should have been pleased. I know. I’m lucky. I’ve been told so many times. Except I hated that scar. I couldn’t not see it, and it reminded me that I had a large tumor hiding in dense tissue below it, for a long time. And that enraged me. But not for too long, because there was something akin to a solution on the horizon. That’s right. A tattoo. A tattoo.

In due course, a very nice administrative assistant from my plastic surgeon’s office (there’s a phrase I never thought I would utter) called to schedule my “nipple tattooing.” She asked if I would like Rick or Michelle, and surmising that Rick was probably a man, I asked if it wouldn’t be too much trouble could I please have Michelle. I subsequently felt even better about this decision since Rick apparently bears some resemblance to a jolly Santa Claus erstwhile biker.  Real talk – I just cannot bring myself to discuss nipples with either Santa or a biker. Michelle was a hoot. Following my announcement that this experience would  be on a Most Unlikely Things I Have Ever Done list, much hilarity ensued about all the other things that would surely be on our lists which for obvious reasons cannot be divulged here – I am very sensible after all with a grown-up job. Although some would argue – inexplicably – that some of these might be entirely more appropriate than nipple talk. Regardless, within seconds, I was sharing confidences with Michelle, as you do with a trusted hairdresser until she executes that one really bad hair cut. And then you leave them for another, “the rebound hairdresser,” – but we always go back to that first one who gave us The Best Haircut Ever, but only once. Naturally. 

As Michelle and I surveyed our reflections in the mirror, arms folded, eyebrows furrowed, me topless, we made objective observations about my left nipple, in the same way the Keno brothers appraise something that may once have been of value, on Antique Roadshow which my husband watches every Monday night, convinced there might be something in our house – other than my nipple – worth millions of dollars. With a tape measure to bolster her argument about where the right nipple should be, the lovely Michelle, (and really, she was lovely), pointed out that I am something of a rarity with a small, but let it be noted, “awfully cute” left nipple. Perhaps she thought I wanted more from the tattoo, but when she painted on a vague idea of what it might look like, I almost wept. Immediately, my eyes were diverted away from the scar. Mission accomplished. Almost.

Again supine on a table, I stared at the ceiling, my mind racing all the way back to the early 1970s when Santa – not Rick – but the real Santa brought for me one glorious Christmas morning a Spirograph Set. It might be my all-time favorite gift. I spent hundreds of hours hynoptized by the geometric designs I could create with the handy templates provided therein. Any other spirograph fans will enjoy this old black and white commercial. I digress, but only a little.

Michelle duly numbed the area, using the aptly named “Numpot Gold,” which I mistakenly heard as “Dumbpot Old.” Along with my failing eyesight, which has nothing to do with cancer, is the sad suggestion that I might actually be harder of hearing than I used to be. Trust me. 56 is not a kinder, gentler, newer 36. I resent my aging body, as I’ve said before. Anyway, following the numbing, not that there is any perceptible sensation in the reconstructed breast, Michelle again produced her faithful tape measure and the lime green template reminiscent of my beloved Spirograph set.

Next, there was the selection of colors, a little like settling on hair-color or nail polish. When I go for a pedicure, a treat I only discovered in the late 1990, the most time-consuming part is choosing the polish. It’s not a simple matter of red or pink and every shade in between, but every other color of the rainbow as well.  A creature of habit, I shouldn’t take so long. I should just stick with “I’m not really a waitress,” even though I really was a waitress once upon a time – a good one, too. Every once in a while I’m lured by something like the cheery, summery “Tarot Reader” and its suggestion of foretelling whatever might be in my stars. My daughter will go for “DS Magic,” a bluish sparkly concoction. She is partial to a flower on her big toe, and when the darling Vietnamese pedicurist asks “Would you like a happy toe?” she always responds as though she has never been asked before, ” Ooh, yes, please! Thank you!.” How I love that little exchange between them.

There are other nail polish colors, the names of which are overtly sexual, a fact that annoys me and leads me back to the contents of Michelle’s arsenal. Surveying the various pinkish and flesh toned inks she selected for me, I wondered about the men who are diagnosed with breast cancer every year, and how they must feel about how every facet of this disease has been euphemized, feminized, and glamorized. Even in the face of estimates by The American Cancer Society that approximately 2,670 new cases of invasive breast cancer will be diagnosed in men in 2019 and that about 500 men will die from breast cancer annually, it’s still wrapped up in sugar and spice. I imagined Michelle discussing with a man recovering from a mastectomy, the relative merits of the various inks that would ultimately create a nipple – ‘Kiss Me,” “Baby Lips,”  “Creme Areola,” “Nude Lip Mix.” Seriously.  I wanted to delve deeper into the subject of these suggestive colors and the creative minds behind them, but the issue is so much bigger than Michelle and me. So she went about the business of creating a nipple – it didn’t take long, given the size (see above).

As she concentrated on fashioning my new nipple, I lay there thinking about gender and breast cancer, only vaguely aware of the sound of the needle puncturing my skin. I thought about men with breast cancer and how they must navigate a culture that is decidedly girly with its lipstick-like colors for nipple tattoos, its fluffy pink pillows that help prevent the seatbelt from digging into the tender, biopsied and rebuilt breasts. I even paused to recollect the uber-feminine pink and black “sex appeal while you heal” bra that is just too much bra too soon for someone like me who typically scores a very nice Calvin Klein bra for less than ten bucks at Marshalls, not to mention the bedraggled, traumatized well-medicated 49 year old version of myself, barely able to stand up straight with bloody-fluid-filled JP drains sprouting, alien-like, from her armpit and either hip. But that is another tale for another day. Today it’s about the tattoo and what it can do for you.

Of course, it is October, and we are still being made aware of breast cancer and talking about its early detection through self-exams and mammograms instead of how we can prevent it or the spread of metastatic disease or what causes it in the first place. We are still amputating breasts, and of the 2.6 million individuals living with breast cancer, after surgery 56% are left with unforgiving mastectomy scars and often no nipples. Some woman cover these scars with tattoos, and on October 21st 2013, Fractured Atlas, a non-profit arts service organization planned the first crowd-funded P.INK Day at Saved Tattoo in Brooklyn, New York. Ten of the city’s top tattoo artists inked scar-coverage and/or nipple-replacement tattoos on ten women who have had mastectomies. P.Ink was founded by Noel Franus, an agency executive at Boulder-based CP+B whose sister-in-law had chosen a tattoo following her diagnosis, treatment, and breast reconstruction. P.INK (Personal Ink) is still up and running featuring over 1,000 images of post-mastectomy tattoos on p-ink.org .Finding a natural alliance between those with breast cancer and the tattoo artists – two seemingly disparate communities – it has become “a place for inspiration and hopefully action” for those who have had breasts removed.    20130912170955-13P.INK-tattoo-sesh1

Dr. Claire Buchanan, a breast cancer surgeon with the True Family Women’s Cancer Center at Swedish Hospital in Seattle, has some patients who have chosen a tattoo and says they experience “. . . genuine delight in showing something beautiful about themselves and that’s a wonderful thing to see.”

In closing, for those who would be offended by tattooed nipples or pictures of women whose breasts have been removed, my hope is that you are infinitely more offended by breast cancer and the numbers of lives it will continue to claim until we start having different conversations about it and admitting that awareness is simply not enough.

Not in October. Not ever.

#ThinkBeforeYouPink

world cancer day & the real warrior in my house

04 Sunday Feb 2018

Posted by in Awesome Women, Breast Cancer Advocacy, Breast Cancer Awareness, Cancer Language, Culture of breast cancer, Diagnosis, Early Detection, Facebook, Family, Health, Language of Cancer, Mammograms, Memoir, Mother Daughter Relationship, Pink Ribbon Culture, Pink Ribbons, Social Media, Twitter, Wilfred Owen, World Cancer Day, Writing

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My breast cancer is not just about me as I discovered when my then fourteen year old daughter decided to break her silence about it. In her own way, on her Facebook wall, and on World Cancer Day 2012.

Thus, on this day designated for speaking up and out, focusing on how everyone – as a collective or individually – can do their part to reduce this global burden of cancer –  I share with you her words and mine from February 4, 2012 . . .

The Real Warrior in our House

I didn’t know about a World Cancer Day. Until today, I’d known only about Breast Cancer Awareness October when the world turns pink for an entire month, so when I detected the lump on my breast on October 30, I should have been grateful for having made it until the end of the pinkest month, blithely unaware that cancer had come calling. Since then, I have encountered more metaphors of war in breast cancer’s literature than I ever found in my collection of Wilfred Owen’s poetry, and I am uncomfortable. Within the context of breast cancer, I show up – albeit reluctantly – for every appointment, procedure, and surgery.  As a cancer patient, I am doing what is expected. I am being treated. At best, I am obedient. Not battling. Not a warrior in pink.

my daughter and meI cannot say the same for my darling girl.  Just a heart-beat ago, she was so tiny, asleep and swaddled, snug in the space between the crook of her daddy’s arm and the tips of his fingers. Safe and secure.

Then, too soon, fourteen and tall, impersonating “strong and stoic,” leaning on her beloved dad and he on her as they wait for surgeons bearing good tidings. Neither feels safe nor secure. Squaring up with a false bravado, she confronts the wild fear that her mother might die yet balks at the notion of wearing the “kid with the sick mom” mantel. She does not want her teachers to know about it in case they might feel sorry for her and give her a good grade out of sympathy.  Mostly, she doesn’t want her friends to feel awkward around her, to tiptoe as if on egg-shells, afraid to say “cancer.” A quick study, she has grown keenly aware of the pink stuff of breast cancer, confounded by “I love boobie bracelets” casually wrapped around teenage wrists when her instinct is to defend me because I was unable, technically, to “keep a breast.“

Remember fourteen? A time for rebellion, for rolling your eyes at your mother’s taste in clothes or music because she was your mother for God’s sake and therefore “so embarrassing.” Fourteen was for pushing boundaries and buttons and for experimenting with make-up and myriad ways to style your hair or sign your name -with hearts instead of dots above “i’s”.

For my girl, this rite of passage is forever marred by her mother’s breast cancer diagnosis, before which she didn’t have to feel as guilty about perfectly acceptable and anticipated acts of rebellion. It is unforgivably unfair. But that’s the nature of breast cancer, isn’t it? Unfair. Lest I forget how it has interrupted her life, I am considering today the first time my daughter spoke of the cancer that entered our home like a thief in the night.

I didn’t know – and I’m sure I still don’t –  the extent to which my cancer has shaken my beautiful daughter, stirred a fear that others dear to her may be at risk.  So when I read the note she posted on her Facebook page on February 4, 2012, World Cancer Day,  I realized she needed to tell – to share with anyone who would listen, in one fell swoop, that cancer had come calling and that her mom was sick, to tell them that being aware means you have to actually do something.

She is the only warrior here.

She’s my hero.

Here’s her note:

In honor of World Cancer Day and my mom, I’m telling the truth … 

Each and every one of you reading this note, know this: you are important to me. And I don’t ever want to lose you. Please be aware. Do not think that just because you’re you, breast cancer won’t harm you. Infect you. Frighten your whole family. Breast cancer doesn’t discriminate. You can’t escape from it. And my mom, my dad, and I had to face up to that harsh reality. On November 11th of 2011, my mother was diagnosed with Stage 2 breast cancer. She told me everything her doctor had told her. About how she had three tumors, and how they had been probably hiding there for five to seven years. Three tumors. Three of them, just sitting in there for all that time, never to be found by her mammograms because they were hidden so well in her tissue. Fortunately, two of the three were benign, meaning they would not hurt her. They were not cancerous. However, one of them was a cancer. Malignant.  My mother’s right breast had a cancerous tumor. But my mom had cancer. My mom had cancer. Mymomhadcancer. I didn’t hear much more of what she said.  After she said “tumor” and that only “two out of three” were benign, it was hard to hear anything else. All I could say was, “But you’re going to be okay…. right?” I asked that question maybe four times in a row. I remember later on she and my dad told me about the next doctor’s appointment, during which she would find out which surgery was best for her.  A lumpectomy or a mastectomy. It sounded like she was hoping for a lumpectomy, which would only remove the tumor. It sounded simpler, but it also meant radiation. Radiation is nasty. A mastectomy means removal of a whole breast. Soon I found out my mom’s treatment required a mastectomy. I would be out of school for a week.

That week, I stayed with my mom’s best friend, Amanda. Amanda is like our own family; she has known me ever since I was little. I stayed at her house once before, when my dad had major heart surgery. Now again, I stayed with her while my mom was going through surgery. Seven and a half hours. An entire school day of waiting. Then my dad – who waited the whole seven and a half hours in the hospital – called to tell me the news. My mom was okay. The surgeons were very happy with the results of not only the removal of the tumor, but the reconstruction of her entire breast.

I remember seeing her in the ICU, when she woke up from the surgery. Her skin was so white, as pale as Boo Radley‘s. Her normally inky blue eyes now reminded me of a colorless sky. I cried at the sight of her. She looked like my mom, only dead. She had been given lots of morphine and so much other medicine, so she was way beyond groggy. Out of it. And then she was able to smile. She squeezed my hand, and she asked me what day it was . . . four times. Thursday, Thursday, Thursday, Thursday. I cried. My dad cried. He wiped his eyes on his shirt. We just stood there crying, rejoicing that my mom was going to be alright.

After removing her original breast and the cancer, her surgeons used skin and tissue and fat from her abdomen and molded it into the shape of a new breast. It was amazing! Today, her reconstructed breast looks almost identical to the other one. Made from her own skin, it looks fine. Just a bit bruised. But those bruises will fade, and this cancer will become just a bad memory. Unfortunately, we still have some healing to do. There’s a large scar across her abdomen, and it hurts her to stand up straight. If she lifts her right arm too high, it hurts. Then there are the tubes and the three surgical drains. Attached to my mom were three long tubes which then attached to what looked like little plastic grenades. Every day, I’d help drain the bloody fluid from them and record how much on a chart. Two have been removed, now there’s only one drain left, attached to a tube from a hole under her right arm. And then there’s always the fear that the cancer may return. Yes, her cancer was removed, but maybe there was some that the doctors couldn’t find and it could scare us again. It could invade my mother’s body once more. It could invade anybody. Which is why I’m begging: get yourself checked out. Find out your breast density. Do self-exams. Please. And it’s not just women. Men can get it too. SO if you’re a guy and you’re wondering why I tagged you in this, there’s your reason. So please. My mom discovered her cancer before it had spread into her lymph nodes. She got lucky, because she found the lump by accident and because her doctor made her get an ultrasound. She learned just in time that her negative mammograms had missed the cancer.

Many women, just like my mom, never even check their own breasts, even though they have been told over and over. It is so important to know what our breasts normally feel like, so we can notice when they change. So please take the steps to know your breasts, to know your body!