It is October 2015 and we are in the throes of breast cancer awareness. Again. #NoBraDay confirms for me that it is still acceptable to sanitize and sexualize a deadly disease, to glamorize and trivialize it in ways that confound me. Once upon a time – if I’m honest – I probably would have participated in the latest breast cancer awareness gimmick, but then breast cancer got me and sent me searching for answers. I keep coming up empty. Here’s the first thing I wrote about it before my diagnosis four years ago:
“My New Pink Ribbon” Nov. 9, 2011
I have shown only a little restraint in not searching every corner of the internet for information about fine needle aspirations and core needle biopsies of the breast. The latter sounds more ominous. November 9th 2011 at 1:30pm, I was scheduled to go to Scottsdale Healthcare for a core needle biopsy. Once again supine in a small room illuminated only by images on an ultrasound monitor and the kindness of two technicians, I was out of sync, discombobulated presumably by the not knowing what was in store for me. More in denial than fear, however, I had not brought my husband with me nor my best friend. I wanted to keep this procedure at the level of an annual teeth cleaning or a pap smear.
In no uncertain terms, I told them I did not want to be talked through the procedure. I just wanted it to be over. But when they veered from the script I had prepared in my head with the doctor announcing they would be doing three biopsies, panic rose the way it does when the pilot announces turbulence up ahead. “Three?” Nobody had said anything about a third; I had barely begun to accept the existence of a second. Again, “Three?” Were they sure? How could there possibly be three tumors in a breast that had passed four mammograms? Discomfited by the almost reassuring response that, yes, the other doctor had ordered three biopsies, I had no choice but to settle in and soon found myself transfixed by the images on the monitor. Strangely hypnotic and relatively painless except when I allowed myself to consider the length of the hollow needle piercing my skin and making its way through three benign or cancerous somethings, and extracting tissue. It was surreal. Stuff of The Learning Channel.
Had I known what they were doing by the time they got to the third one under my arm, I like to think I would have protested the metal marker being placed deep within my breast tissue, in the shape of the ribbon synonymous with the Susan G. Komen Foundation and the search for a cure, a ribbon I have grown to despise. That, and doing things on the count of three. “Relax. One. A little poke. Two. Lidocaine going in. Three.” And then a sound like a staple gun. “You’re doing great.” Three times, I did great. I did especially great on the third one, an awkwardly positioned tumor under my right arm. I didn’t realize just how awkward until the subsequent mammogram, an undignified and ungainly dance, my partner a cheery technician charged with compressing my small punctured breast between the two plates in such a manner that the surgeon would be able to see the new metal marker under my arm. Surgeon. Surgeon? Nobody had said anything about surgery. Or had they? I could not recall. After much repositioning and squeezing and picture taking, someone in another room was satisfied with the X-ray picture conjuring a fleeting image of the Wizard of Oz.
Finally, with a flourish and a big, beaming smile, the technician presented what had been declared a satisfactory mammogram picture of my breast. There it was. Right there on the bottom right of the screen. A new metal tissue marker, fashioned in the shape of the ubiquitous breast cancer awareness ribbon.
Ironically and thankfully, all this took place after we had ushered out October, Breast Cancer Awareness Month (although early in November all those commercials were still airing). In October, there is no escaping all the people in pink, scores of them, running races, hawking merchandise emblazoned with pink ribbons, not knowing where all the money goes or who to ask to get a straight answer. No escaping the business of breast cancer.
I found myself wondering about Susan G. Komen, the young woman who was only 36 years old when she was killed by metastatic breast cancer, and questions about the organization subsequently established by her sister began gnawing at me. Why has the foundation that bears Susan’s name failed to appropriately address the kind of cancer that killed her? Why has the Komen foundation relentlessly emphasized early detection and awareness all tied up in a pink ribbon? Until that tiny metal ribbon had been placed in the tissue of my right breast, I had regarded Komen et al with a mixture of indifference and denial, blithely handing over an extra dollar at the store to go towards “the cure.” I would never do that again.
I had told myself that breast cancer is the thing that happens to other people, to celebrities who grace the pages of magazines, to women who don’t show up for their mammograms. It does not happen to me. Oh, what a fool I’d been – duped and manipulated by its mythology. How jarring it is to contemplate disease and death juxtaposed with all the trappings of breast cancer awareness – ribbons and teddy bears and perfume bottles and cupcake liners. Such trinkets would not be out of place in a 19th century nursery rhyme about little girls, very far removed from the ravages of a disease that kills.
This new affront helped pass the time while I waited in another waiting room, unaware of the tiny patch of red seeping from the biopsy site through to the front of my hospital-issued blue and white striped gown. I had not anticipated blood or ice-packs or the surprise mammogram, but I was beginning to learn that breast cancer brings one surprise after another. Sitting there, exposed and vulnerable, an icepack atop my bruised and bleeding breast, a lovely young woman, dressed in a gown like mine, put her hand on my shoulder and her earnest brown eyes looking into mine, asked conspiratorially if “they” had poked me. Wordless, I wasn’t sure what they had done. No matter, she assured me I would be in her prayers that evening.
It is a strange sisterhood indeed, where an instantaneous intimacy allows us to talk about being poked and staged and prayed for. It made me uncomfortable, but not as uncomfortable had I been left out by language. Language is everything. Maybe it can be attributed to my immigrant spirit, but I knew I had to learn the vocabulary, the rules, the norms for breast cancer patients gathered together in waiting rooms. And I had to learn quickly. Apart from the fact that I was well past the best age for learning a second language, I simply did not want to be immersed in this new culture.
I have other things to do. Christmas is coming.
The pathology report would come back on November 11th, Veteran’s Day, a day for remembrance. The Breast Care Patient Navigator, a new one, called to tell me I should really bring someone with me. Did I have a husband? I did? Oh, good. I should bring him along. She would see us both at 11AM on 11.11.11. One of us would listen, while the other would focus on hearing the only words she wanted to hear with Christmas around the corner.
Twelve days after Ken died, I wrote this post. I haven’t read it since, and I’m not going to read it tonight. Somewhere in the middle of the grief-stricken ramblings, I remember is a pure – and good – memory of this day twenty five years ago – January 13, 1990 – the day when Ken and I embarked on what we both knew was one hell of a love story.
So, I’ll raise a great big whiskey to you tonight, Ken, and tell you that I’d do it all again.
x
11/27/2013
A friend, one who knows, told me the other day that it will take at least a year before the sharp stone of grief will shift from the very center of my being. She told me not to make any big decisions until I make it through all the “firsts” – the first Thanksgiving without him, Sophie’s first birthday without her dad, Christmas and decorating the tree, New Year’s Eve and not-quite-legal fireworks at the end of our street, Valentine’s Day, St. Patrick’s Day, Easter, my birthday, Mother’s Day, Father’s Day, the Fourth of July and fireworks over Morro Bay, summer vacation (will I ever be able to face Morro Bay again?), his birthday, Halloween and pumpkin carving, our Wedding Anniversary, and finally, the first anniversary of his death. His death.
My. Husband. Is. Dead.
And then she said, well, she texted me, which is a good thing because if it’s written down, I’m less likely to forget it:
. . . after a while that pain will feel like a friend. And you will be afraid to lose it because that will mean you are better and over it and not missing Ken any more.
~ just one of the mind games that Grief plays.
This grieving business has brought out the best in people who care about me, beautiful expressions of sheer humanity. It has also brought out the worst – albeit unintentional – in people who don’t know me and don’t love me but who are paid to deal with me, to deal with death for a living, to know what to say to new widows, to know not to say stupid things. (Recent days have brought me back to when I first landed in cancer country, but if you’ve visited this blog before, you know I have beaten that horse to death).
From the people at the mortuary, those with years of experience in the funeral industry, who called me with the first-time-I’d-ever-heard-it-details of Kenneth H‘s last wishes as opposed to Kenneth M’s which I knew like the back of my hand, to the automated email telling me about the online obituary and memorial page even though my husband, a very private man, had been adamant about no obituary and no fuss; to the doctor whose office assistant left a voice-mail telling me that there was nothing else she could do for me because I take four medications already; and then, my husband’s primary care doctor who wanted me to place myself in his position, to take a minute and see where he was coming from, regarding the whole debacle over who should sign the death certificate – hisposition, if you don’t mind – and then my oncologist (whose assistant didn’t return my call for help until after it was too late to call my primary care physician) who wouldn’t prescribe anything for me because, you know, the physical pain of grief has nothing to do with cancer, now does it?
I wanted to scream that if we were still in South Derry, there would be a very nice doctor on the other end of the line, telling my mother he was sorry for my trouble and that he would sort us all out with enough Diazepam to help cope with the shock, the journey back to America, the jet lag, the grief, the pain, the immeasurable sadness. The same doctor didn’t know my mother or me; he was merely the doctor on call, a kind stranger, and he had a heart of gold.
In the twelve days since my husband died – my husband died – can you hear me now? – I have cried and cursed and ranted and raged. I have been irreverent and exhausted and delirious and despondent. I have even laughed about things that should make me cry. I went out today and bought lipstick. Honest to God. I actually got up, showered, put make-up on a haggard face and drove to a store the way I have done thousands of times before, and I bought a cheery lipstick called ninety-nine red balloons. Just like the song.
Floating in the summer sky
Ninety-nine red balloons go by
I also bought a too-expensive-even-though-I-should-be-watching-my-finances-now-that-I’m-a-widow autumnal centerpiece for a Thanksgiving table that will be missing a place-setting. At some point, I noticed I had already changed my Facebook status to “widowed.” I don’t like the ring of it one bit.
Some of these trifling things are great distractions – wondering who will show me how to back-flush the swimming pool or tell me what that even means, or set the timer on the sprinklers or develop that intuition my husband seemed to have about knowing when to change the oil, or rotate tires, or change air filters, or get gas (I always forget to get gas, usually I’m on “E” with the light on. I used to joke about how running on empty is my last stab at living dangerously). It may actually not be that funny.
In the past twelve days, I have learned how to comfort people whose husbands are still alive. I held in my arms the neighbor I don’t know but who brought cheery chrysanthemums to my door. She couldn’t stop crying about the tragedy that has befallen my daughter and me, and I had to get some Kleenex for her and nod that time will ease the pain. Hell, I even consoled the discomfited doctor after she realized that my situation was sort of “urgent” and that, yes, Xanax might help.
Of course Xanax helps. Just ask any of my family members back home, who have endured incredible pain and loss in recent years. At every wake, there’s always some kindly soul passing around the Diazepam the way we used to pass around a pack of cigarettes at the pub. No. I’m not saying that Xanax, Diazepam, or Ativan numbs the grief or takes it away or helps me avoid the reality of loss. It just dulls – briefly – the excruciating physical pain of the sharp stone of grief that’s stuck somewhere in the vicinity of my heart.
Here’s the thing. I was Ken’s wife for one day shy of twenty-two years. That’s a lifetime. When we met, we both knew something special was happening. I used to think we would have fit in rather handily on the cast of Cheers. Ken wasn’t Norm or Cliff, but he was a regular. When he came in to the bar where I was a bartender, I always had a beer ready for him. I would position myself behind the bar, right across from him and nonchalantly wrap silver-ware in paper napkins, exchanging quips and innuendoes with him without making eye-contact, because when I did, I blushed.
A bit of a cliché I was a twenty-something Irish immigrant who had over-stayed her welcome in America and still had a broad Antrim accent. As such, I was the main source of entertainment for the men who had just come off the day-shift; they were easily enchanted by what they considered an Irish brogue, and the more alcohol I served up, the more they wanted to tell me all about their Irish roots. I often dismissed them as “Plastic Paddys,” which they considered a compliment. Now, this was before microbreweries were de rigueur, but I was still overwhelmed by the variety of beer in variously colored cans – yellow for Coors, the Silver Bullet Lite version, blue and white Miller Lite etc The regulars indulged me, “Hey Irish,” they’d beckon and to help me out, they ordered rounds of beer by color: “Gimme three silver bullets, one red and blue, two white and blue, and two yellow.” Ken said I always charged $11.50 a round, but none of them minded.
Ken wasn’t fictional Sam Malone, Cheers owner erstwhile recovering alcoholic and former Red Sox player with a little black book full of women’s names and numbers. Ken didn’t need a team of writers, and I never met a woman who didn’t love him; and, I wasn’t Diane Chambers (well, maybe just a little) but the chemistry between us was undeniable and made up for the lack of compatibility. For almost two years, we denied what was so obvious to everyone else. He loved that I loved music and that I could give as good as I got. I remember he was very impressed when I sneaked some of his favorite tunes on to the bar’s jukebox, a contraption that could be described as “country thunder.” When the bar-owner wasn’t paying attention, I added Neil Young’s “Ohio,” and The Rolling Stones “Sympathy for the Devil,” Bob Seger’s “Night Moves,” Tom Petty’s “Don’t Come Around Here No More,” the Buffalo Springfield’s “For What It’s Worth,” LA Woman by The Doors and, well, anything by The Moody Blues. Admittedly, I was a bit thrown when Ken told me one of his favorite songs was “All in the Game” by Tommy Edwards. Now, it was easy for me to hijack the jukebox, because I had the flat-out awesome job of going with the other bartender to a wonderful warehouse, somewhere in Phoenix, that was loaded with row after row of 45-inch singles. It was my job – a job – every other week, to replace some of the records in the jukebox, to keep it somewhat “current.” To stay on the owner’s good side, I’d throw in some Hank Williams, and I never interfered with Patsy Cline’s “Crazy” – nobody in her right mind would get rid of “Crazy” – but every new record I added was for Ken. And he knew it. Bob Seger’s “Sunspot Baby” would start up, he’d wink at me and then complain to the owner about how the new Irish waitress was ruining the jukebox.
The banter and badinage flew like electrical sparks between us, and we made those around us laugh and wink knowingly. We were the entertainment, and everybody knew we belonged together. Even before we did. I imagine had Dr. Frasier Crane been a regular, he would have had this to say about our performance:
“I know, I know. Now you’re going to deny it. Even though it’s ludicrously obvious to everyone around you, you two will go on pretending it’s not true because you’re EMOTIONAL INFANTS. You’re in a living HELL. You love each other, and you hate each other, and you hate yourselves for loving each other. Well, my dear friends, I want no part of it. It’s time I just picked up where I left off. It’s time to put Humpty Dumpty back together again. So I’ll get out of here so you can just get on with your denial fest.”
And then one day, Ken folded. I always loved that he broke first. It was January 13, 1990, which thereafter we considered our official anniversary. I ran outside to give him his change. After all, $11.50 for one beer was a bit much, even by my standards. When he had me outside and alone, he looked right at me, told me he was crazy about me, that he always knew I had been out there, and that he had almost given up waiting for me. Quite a pick-up line, but it worked. Then he asked me to plant a kiss on his lips, and I reverted to being coy and strategic. But that didn’t last.
Within a matter of months – one month – we had moved in together. He brought nothing from his previous life, just a lot of love for me, and I dragged the collected Shakespeare, my Seamus Heaney poetry books, my collection of Life and Rolling Stone magazines, and a whole lot of crazy love for him. Crazy love – like the kind Van Morrison sings about, especially with Ray Charles:
Yes it makes me feel righteous, makes me feel whole
Makes me feel mellow down into my soul
While I never convinced him that Van Morrison was, in fact, God, I managed to turn Ken on to tennis, and we watched Wimbledon and the US Open on a tiny black and white TV-radio-alarm clock combo in a tiny apartment that amounted to a shack in the back of an old ranch house in central Phoenix. Then one day when we were watching TV, I said, “Let’s go get married.” He said, “OK,” and put his boots on.
I remembering digging out a big fat phone book – the yellow pages – and found a wedding chapel in an old neighborhood in west Phoenix. The preacher there reminded me of a lovely blue-eyed old man in Field of Dreams, earnest and patient, as he told Kevin Costner’s, Ray Kinsella about Moonlight Graham and all the blue hats he never got around to giving his wife, Alicia.
We asked a stranger to officially witness the ceremony, and we vowed to each other that we would stay together in sickness and health, till death us do part. Health is easy, but sickness is a bitch. Madly in love, we had no reason to suspect that breast cancer (mine) or aneurysms (his) would move in and turn things upside down more than once and make us resent our own bodies. Thus, we filled up that ordinary November morning with a time-honored succession of extraordinary promises. We couldn’t stop smiling. We didn’t even tell anyone. Young and wild, it was as though we had eloped to Gretna Green. I think we probably even went to work afterwards. Along with all the other rituals we performed every day, the getting married was just something we could have done any day, at any time. No fanfare. No hoopla. Completely ours. Private.
We loved being answerable to only one another, doing whatever we wanted to without having to worry too much about other people. I remember one night when I was homesick for the smell of the sea. I just wanted to stare out at the ocean which seemed another world away from the desert southwest. It was a Friday afternoon, and we had nothing else to do. Still years before Sophie was born, we got in the car and started driving. No map. No GPS. No specific destination. Just ocean. That night, we were in Los Angeles, and I was inhaling the sea air. The next evening, we were in Pismo Beach, strolling along the pier. As if to put America’s vastness to the test, I asked him to keep driving. Eventually, we stopped by a lighthouse where we balanced the camera on the car, set the self-timer, and took a picture of ourselves, windswept and clinging to each other, completely unaware that a decade later, we would stand again on that very same spot on the road to Monterey, smiling for a picture that would be taken by our little girl. Then, for a decade, San Luis Obispo County – Morro Bay – became our family’s vacation spot.
We created hundreds of lovely little rituals and routines over the years. My mother always said I could set my watch by Ken. True. I always knew where he was, what he was doing, how much he loved me, how proud he was of things I had done professionally. He was my greatest cheerleader and the person who once told the young me who used to get her feelings hurt easily and who cared too much about what other people thought, that she needed to grow some hard bark, because she would need it. Well, Ken, I need it now. I know you didn’t want me to harden; you wanted me to be tough. But, it is just so hard to be tough enough to fully absorb the blow of your death, to look up and expect you to walk in with another cup of coffee for me and ask what I’m blogging about and then wonder aloud – with a wry smile – if the woman I once was would be coming back any time soon. Each of us wrestled with the truth that cancer changed me, as a brush with mortality would. It wasn’t bad or good. It just was.
It was not a perfect marriage, but it was an honest marriage. We argued about little things but never about the big stuff. One of our first arguments was over what it was he was thinking about. We never argued about that again. It went something like this:
What’s wrong?
Nothing.
Are you sure?
Yup.
So what are you thinking about?
Nothing.
Well, it must be something. I can tell. Are you mad at me? Is it about me? (I mean, isn’t it always about me?) Well, can you at least tell me what it begins with?
No baby. Just private thoughts. Private thoughts, my honey.
Private thoughts. Well, you can imagine how well that went over with someone who has to know the inner details, the finer points, the “how are you really feeling” details about everything. But he never told me. And the strangest thing happened. I realized over the years that we all have private thoughts, secrets never to be told, things that stay deep within us – not bad, necessarily, just private thoughts. Most people just wouldn’t say that out loud. But Ken did.
Looking back on it, he said it the same way he once told the cashier at a Pep Boys, after he’d paid in cash for new windshield wipers, that she couldn’t have his address. Not that he was a conspiracy theorist; he just hated his name and address being placed on some list only for it to be sold to someone who would profit from it. Annoyed because he was just not cooperating the way most customers did, the young cashier’s jaw dropped when Ken looked at her, deadpan, and with a twinkle in his eye, said quietly, “I just can’t do it. I can’t tell you where I live. The cops are after me.” And I had to walk out of the store because I was laughing so hard.
Then I learned to cook. It was before Food TV Network, and I relied almost entirely on an eclectic group of chefs on PBS so there was lots of Cajun cooking going on in the early years. Our first Thanksgiving Dinner together was a foreign affair as far as I was concerned. Never mind the Food TV Network, this was before the Internet and Google, so I had to go out and buy a holiday cookbook from Williams and Sonoma to learn exactly what went into a Thanksgiving Dinner and what this quintessential American tradition was all about. I’m sure like most Northern Irish folk, I would have the natural tendency to ask, with just a touch of martyrdom “Sure what would we have to be thankful for?” And then there would be some hand-wringing and worst-case scenarios about what happened to your man whose wife took up with somebody else, or the state of unemployment or Maggie Thatcher and terrorists, or The Troubles in general, and the brain-drain with all our young people like me leaving for America, Australia, New Zealand – following the sun.
A quick study, I was soon fixing turkey and all the trimmings like a pro. I even made pumpkin pie and candied yams (nothing from a can), and amber colored side-dishes and butternut squash soup, fare that would never have shown up at a fork supper or tea after a Harvest Home service at a country church in Northern Ireland. As if there wasn’t enough food to feed a small country, I was compelled to assert my Irish-ness with Brussel sprouts which Ken hated and roast potatoes and, for good measure, a Pavlova or a sherry trifle for desert – I could only make sense of Thanksgiving Dinner if I considered it an early Christmas Dinner. As if I’m not confused enough about my cultural identity. And to make it truly my Thanksgiving, we would listen to the entire Last Waltz soundtrack.
For tomorrow, I have ordered a turkey breast dinner. Just the breast, because that means there will be nothing to carve and no carcass for soup. Ken always carved the turkey, and he loved my turkey-noodle soup. Oh, how could I possibly brine and roast a turkey without Ken here to do the basting and the carving and telling me not to put apples or anything sweet in the stuffing? I always put apples in the stuffing. Why not? And when he wasn’t looking, I basted the turkey with maple syrup. I always add marmalade to the yams too and slices of clementines or even the syrup from cans of mandarin oranges. If it’s not sweet, what’s the point?
My parents are here, and already I am dreading the day they tell me it’s time for them to go back home to Castledawson and for me to resume living again. I hope they will stay for Christmas. My lovely irreverent friend in Tempe who hails from Ballynahinch and who knows about grief (as she will tell you herself, she is hands-down the winner in “The Sad Contest”) is going to bring a Pavlova and maybe even some currant squares and custard. And my mother will put the kettle on for us and make tea with Barry’s teabags and bring out a plate of Hobnob biscuits. I will complain if she puts too much milk in it, because I like a good County Derry cup of tea the way my Granda did, so strong “you could dance on it.’ Our meal tomorrow might feel a bit like a Northern Ireland Christmas dinner from days gone by. I just hope I remember to eat.
We have lots of food in the fridge – baskets of sympathy from near and far from heartsome people who ache for us. I don’t know what to say to them, other than thank you. And, my gratitude is heart-felt and genuine. But if I’m honest, I hate that it is these strange new gestures I am thankful for this year. It would be so much easier to give thanks that the turkey’s not dry.
Oh, Ken. Why did you have to die? There was something I wanted to tell you. It was important.
It doesn’t matter. By now, I have to believe you have run into Lou Reed, that the two of you have scored some really good weed from J.J. Cale, and you are feeling no pain. And maybe Seamus Heaney will raise a glass to you.
Opening the in-flight menu on my trip back from Denver this past Sunday, I was reminded that Breast Cancer (industry) Awareness Month is in full swing. Again. So again, I am reminding my friends to remind their friends to think before they pink. With all that’s happened over the past year, I have chosen not to dwell so much on being diagnosed with cancer, living with cancer, or even expecting to die from cancer. Having said that, the paralyzing fear of it progressing certainly knew how to make an entrance a couple of weeks ago.
But in the early days following diagnosis, cancer hung from every sentence. Anchored down in unfamiliar waters, I would have lost my way back were it not for the kindness of strangers.
“You. Have. Cancer.”
Since hearing those three words, I have encountered, sometimes in the very same room and on the same day, the noblest expressions of humanity – along with the very worst. Generally speaking, those who have impacted me most on this trek through unchartered territory, fall into one of five categories.
If you are beginning a similar voyage, you may even run into them along the way:
People who . . . are related to people or know people who know people who died of the same cancer as that with which you were just diagnosed. They will be compelled to share this with you, in excruciating detail, along with their theories on why it happened. They’ll even insinuate that it could have been prevented, that those who died must not have shown up for their mammograms or they smoked or drank too much wine or did not exercise enough or they flat-out chose to be too stressed about work when they should have just put their feet up. But – and this is important – because these folks have been blessed with a sixth or seventh sense, they will know you are valiant and a fighter, therefore you of all people will most certainly “beat this thing.” They will pray for you, too, but maybe not too hard because, after all, you got “the good cancer.” They will not tell you, however, that those same prayers obviously went unanswered for the others . . .
People who . . . exercise regularly, and just can’t seem to shift the baby weight, the middle-age spread, or the ten pounds that revisit ever year between Halloween and New Years. They will tell you how incredibly lucky you are to get a boob job and a tummy tuck out of this cancer business. Such a bonus! You should be jumping for joy. Why aren’t you grateful? I mean, you got the good cancer! Following an eight hour surgery during which your breast is amputated along with its nipple and replaced with a mound of fat and tissue from your abdomen, you will indeed own a flat stomach and a “breast” that weighs the same as your ‘original’ breast, the one that had the dense tissue that nobody told you about, which, by the way concealed the cancer that flourished for nobody-really-knows how many years. Along with that, you will receive an $80,000 bill that will be covered by insurance if you have it, and you’ll be branded with a hip-to-hip incision with JP drains, grenade-like, hanging from long rubber tubes that sprout from either end of it and under your arms. You won’t feel lucky. Stooped and scarred, you will feel old and scared. You will feel guilty for not feeling grateful. You will see fear creep across the faces of those who love you most, and you will feel guilty again, because you don’t know how to make them feel better. The truth is that no matter what those other people said, you really aren’t that strong. You will miss your old body and the person you used to be. So will other people. In spite of themselves, they will say the wrong thing, because eventually you will look just like the person you used to be. Only you will know that the person you used to be is not coming back any time soon. But when she does, if only for sporadic visits, you will know clarity and joy. Be patient.
People who . . . worship at the shrine of positive thinking. They will tell you, fervently, that they know exactly how you feel and if you just stay positive and strong, you will triumph. You will kick cancer’s ass. Just fight like a girl. God doesn’t give you more than you can handle, right? Some of these people even post inspirational quotations on Pinterest, like “Losing is not an option.” As you repeat this mantra, attempting to adopt a cheery attitude, try really hard not to think of the people who have died because they just weren’t positive enough or didn’t fight hard enough.
Kind strangers . . . who will reaffirm your belief that people are essentially good. There are scores of women who write in the blogosphere and who have saved me from myself time and again – my friend, Marie, whom I have never met, and the bloggers she rounds up at Journeying Beyond Breast Cancer every Friday one of whom is Kathi, the beautiful, brainy no bull-shit Accidental Amazon with her humor and heart. Certain individuals stand out like a colleague who didn’t know my husband but waited at the hospital with him for the better part of a day, like the radiologist I encountered the day before the mastectomy.
I will never forget him.
After the obligatory mix-up with the out-patient registration department (its own republic), my husband and I made our way to the Nuclear Medicine room. I remember wondering how many people had preceded me, as I again assumed the position, supine on an examination table, within a darkened room. The procedure that day involved three painful injections of radioactive dye directly in and around the nipple of my right breast. I wince, even now, writing about it. But more than the sting of those injections, what has remained with me is the genuine kindness of theradiologist right before he administered them.
… I’m so sorry you’re here
And he said my name.
He said my name as he looked right into my eyes. I do not remember the radiologist’s name, and I may never see him again in my life, but his acknowledgement of the trek I was about to begin across cancer country, and his sadness to see yet another person begin it, was one of the finer expressions of humanity I have encountered. I even forgive him for not offering me more of the numbing medication.
People in pink . . . scores of them who cannot be avoided in October when so many of us buy pink ribbons and run races without knowing where the money goes or whom to ask to get a straight answer. These people will teach you again and again that there is no escaping the business of breast cancer that is awash in pink. You will find yourself wondering about Susan G. Komen, the young woman who was only 36 years old when she was killed by metastatic breast cancer. In the blink of an eye, just three years, it ravaged her body. You will begin to question the organization subsequently established by her sister. The people selling the pink ribbon products may not even realize that the organization that bears Susan’s name has failed to appropriately address the very kind of cancer that killed her. Instead, the Komen foundation has relentlessly emphasized early detection and awareness. All tied up in a pink ribbon. Not good enough, really. Not for me. Not for my daughter. Nor yours. True, I used to regard Komen et al with a mixture of indifference and denial, blithely handing over an extra dollar at the store to go towards “the cure.” Breast cancer was the thing that happened to other people, to celebrities who grace the pages of magazines, to women who didn’t show up for their mammograms. It didn’t happen to me.
Oh, what a fool I’ve been – duped and manipulated by the mythology of mammograms and the promise of pink ribbon. Jarring it is to associate with disease and death all the trappings of breast cancer awareness that distract – ribbons and teddy bears and perfume bottles and cupcake liners. Such trinkets would not be out of place in a 19th century nursery rhyme about little girls, very far removed from the ravages of a disease that kills women and men.
If my breast cancer had a color, it would be white, the same white as the dense tissue that concealed it from three mammograms. But nobody told me to ask about tissue density. Every October, Nancy Brinker’s “conventional messages“ failed to remind me when I made a pink purchase or walked in the Race for a Cure that, free or not, the standard mammography will not detect cancer in dense breast tissue. Thus, detection will come too late for some women and men.
So this October, if you are more than aware of breast cancer and want to help end the pink ribbon marketing and manipulation, please support Breast Cancer Action’s 2014 Think Before You Pink campaign – a direct call to STOP THE DISTRACTION
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, in 2014 focusing on Target 5 of the World Cancer Declaration which is all about reducing stigma and for debunking the myths that abound about breast cancer, I share with you her words and mine from February 4, 2012 . . .
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 swear I have encountered more metaphors of war in breast cancer 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.
I 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 father’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 together for surgeons bearing good tidings. Neither feels safe nor secure. She is fighting so hard to keep the tears from falling, squaring up with false bravado to keep the fear at bay, to confront the panic that her mother might die. She balks at the notion of carrying the mantel of “kid with the sick mom.” She wants her teachers to know nothing 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 and is confounded by it, not knowing just the right thing to say about all those “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 being fourteen? It was that time reserved for rebelling a bit, for rolling your eyes at your mother’s taste in clothes or music because, well, she was your mother and therefore “so embarrassing.” Fourteen was for pushing boundaries and buttons and for experimenting with make-up and myriad ways to sign your name (with hearts instead of dots above “i’s”) or style your hair. For our girl, this rite of passage is forever marred by her mother’s breast cancer diagnosis, before which she didn’t have to feel quite so 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 again today the first time my daughter spoke of the cancer that came to our house like a thief in the night.
I didn’t know – and I’m sure I still don’t – the extent to which cancer has shaken our beautiful daughter, stirred a fear that others dear to her are at risk. So when I read the note she posted on her Facebook page on February 4, 2012, World Cancer Day, I realized our girl 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. Know your body!
