Profoundly saddened by the recent death of Dolores O’Riordan and news that Tom Petty died of an accidental overdose, I barely looked at the clock yesterday, the way I have done for the past six years, on January 19th. I am loath to declare the date I underwent the mastectomy and reconstruction of my right breast, a “cancerversary,” one of those cheery-sounding sniglets often used to mark milestones for those ensnared within the disease. There are too many milestones – the day a lump is discovered or a diagnosis delivered; the date of a surgery undertaken to remove tumors or breasts or pieces of a lung; the day, five years after diagnosis, when an oncologist makes a pronouncement of NED – No Evidence of Disease.
Maybe it’s because we don’t have the right words to respond to cancer, that we make up other words – to minimize and manage its havoc, to shelter us from it, to make us smile through it even as it terrifies us. We are terrified.
me with Sherman Alexie
Sherman Alexie. says that writers must write about the scariest things in their lives. Intrigued by this advice, I bought a ticket to hear him speak one evening at the Heard Museum in Phoenix. Accompanying me was my daughter, in Junior High at the time and immersed in his Absolutely True Diary of a Part-Time Indian. Along with everyone else, we laughed as he shared what were surely the scariest things about his early years on the Spokane Indian Reserve. His laughter as he described his father’s beverage of choice,”Squodka” – a mix of Squirt soda and vodka – belied, I imagine, the anguish of a young boy confronting the reality of an alcoholic father who would disappear for days at a time. I know Sherman Alexie knows 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 confronts its reality or that leads us to knowing its cause or how to prevent it. We speak in codes that 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. Codes. “Mastectomy,” for example, is code for “amputation.” It makes me wonder. Were I an amputee in the “traditional” sense, would I refer to the day I lost a limb as my “ampuversary”? No. I would not. Medical euphemisms abound. I used to toss around “lumpectomy” as though it were the removal of an inconsequential wart, instead of what it really 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 my 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 in agreement 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.
Reading through the details of my surgery, you would never know that cancer and its treatment is ugly or that it hurts. At times it sounds downright regal, befitting a fanfare of trumpets, especially that climactic moment when my breast tissue was “elevated off the pectoralis and delivered from the wound.”
While three surgeons operated on me, my weary husband waited, leaning on our daughter, she on him. It would have been about ten o’clock in the morning when my surgeon came out to announce to them what she would later write, that “the frozen section was negative for metastatic disease,” that there were no abnormal nodes, that no further dissection would be needed. She and my husband performed a silent high-five in the hospital hallway. And, after three hours, she had removed all the cancer she could see and could go 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.
They worked on me for the next six hours, and a day later released me back to my life. Six 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, since the DIEP flap reconstruction, is a trivial but nonetheless relocated belly button, its circumference now dotted with tiny white scars. Below it, a thin scar, faded to white, stretching from hip to hip, with ‘dog-eared’ reminders on either end where JP drains pulled excess bloody fluid for 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.
I tend not to dwell in the macabre, but I cannot help wonder 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 six years – the cancer, the death of my daughter’s daddy, the shift in priorities – I suppose you could say what they say in Northern Ireland. “God love her, she’s come through the mill.” Lest I wallow too much, however, there is always the reminder that I could be worse off.
I recall encountering someone I hadn’t seen for a few years, and he asked me if I had read Joan Didion’s Year of Magical Thinking. Yes. Indeed I have. Several times. I know great chunks of it by heart. And then he said, “Well, at least your daughter didn’t die.”
At least your daughter didn’t die.
No. She didn’t. She is right here. She is 20 years old now and beautiful. She is tough without being hard. She is vulnerable without the man who was her first word and who bought her ice-cream every Friday afternoon. She learned to drive without him and walked across the stage to receive her high school diploma without his cheers ringing in her ears. She earned her first paycheck without the winks and smiles that encouraged her to keep being great at at being herself. She completed her Associate’s Degree and is off to complete a degree in Psychology, so she can one day work with young people who have lost parents. Sometimes my lovely girl reminds me of a beautiful bird. Exotic. Rare. Endangered.
On the anniversary of his death, she told me it was beyond her grasp that two years had passed and 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.
So I didn’t know what to say to the person who asked me about Joan Didion and therefore said nothing. I should know but still don’t that when people show you who they are, believe them. Instead I reminded myself of Lou Reed’s reminder of magic and loss and of Sherman Alexie who told us that night in the Heard Museum that when we despair at the lack of compassion in the world, we might remember that the world gave us Hitler – but it also gave us Springsteen.
The world gave us Bruce Springsteen.
And Dolores O’Riordan. And Tom Petty. And, yes, the world also gave us Donald Trump. And all the people who say the wrong thing at the wrong time. And somehow we have to find the sweet spot in which to live and die.
Magical thinking . . .
So what will I do to mark the day?
A day late, I may just climb again to the summit of Piestewa Peak in the Phoenix Mountain Preserve. It has been over a year since I sat at the top, and I have missed it. Up there, I will survey the valley below. And, glad to be so high up and far away from where I lay eight years ago, I will weep.
I don’t know John McCain. I don’t know if he cried when he learned of his cancer diagnosis. I don’t know how he feels about expectations of him to beat it because, after all, he has proven – in the context of war – that he is a fighter: “Senator John McCain has always been a fighter. Melania and I send our thoughts and prayers to Senator McCain, Cindy, and their entire family. Get well soon,” says Donald Trump. From Barack Obama, “John McCain is an American hero & one of the bravest fighters I’ve ever known. Cancer doesn’t know what it’s up against. Give it hell, John.” McCain’s demonstrated toughness, his heroism in Vietnam, has absolutely no bearing on how cancer will treat him. It’s enough to be handed a devastating diagnosis without also being told you can beat it. What if you don’t? Does that mean you didn’t battle hard enough? Moxie alone is simply no match for the disease.
Cancer. When I heard it got me, 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. Five years 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 nurse who delivered the news to me in much the same way as my mother might call to tell me a childhood friend or a distant relative has died – reverent, hushed, kindly.
Even today, if I shut my eyes, I can just discern the shadow of my former self, standing up and walking out the door, mortally offended by that nice Breast Cancer Navigator informing my husband and me that I had cancer.
Conspiratorial and quiet, reminiscent of whispered speculations about a cause of death when all the evidence points to hard living, on and on she talked. Her carefully chosen words filled my ears with fear, even as she stressed that what I was hearing that day in her dimly-lit office was definitely not a death sentence. Nonetheless, I heard a crack. The sound of a life altered that even so many months and years later, has me wondering how I should respond to Muriel Rukeyser‘s question:
“What would happen if one woman told the truth about her life? The world would split open.”
Is it because it is invisible, like the actor who, having exited the stage, falls silent and slips behind the scenes until the encore? Or is it the treatment that belies cancer’s smugness, mine so cleverly concealed in 1,825 innocent-looking pills that I promised to consume over the next five years? Whatever it is, I soon found that many of my friends and acquaintances were skilled in deftly averting their eyes from mine and not talking about it. In retrospect, what ailed me was easy to avoid – the persistent and gnawing dread, brief but boiling hot flashes due to a chemical menopause caused by Tamoxifen, aching joints, nausea, and fatigue. All these can swoop below the radar in a way that a head made vulnerable and bald by chemotherapy cannot. What had I expected? The details of my pathology report on a perpetual crawl across the bottom of the CNN screen so no one would forget about me? My name spelled out in pink lights across the front of a Safeway supermarket in October? No. I craved good old-fashioned sympathy, long phone conversations into the night, and endless cups of tea. I did not want people telling me I was brave or in their prayers or that cancer was a gift or that it was part of God’s plan for me or that there must have been something – something – I did or didn’t do that contributed to the cancer that was crashing in on me and turning everything upside down, inside out.
I wanted home. I wanted my mother, but she was too far away. I wanted to hear the comforting colloquialisms that pour from rainy, rural Northern Ireland, phrases that remain elusive in the desert southwest of these United States, its mountains baking in the predictable sunshine. Home brings the language I know and love, like the words of a neighbor from my childhood that leaped from a Facebook page: “It must be so difficult to cope with that burden when you are so far from your mammy. I’m sure she is all you want at the minute, as always, when trouble visits your door.” When trouble visits your door … when I hear that phrase, I am instantly 12 years old again, in the house where I grew up, stretched out on the good settee, trying to concentrate on a new Enid Blyton book rather than the blistering chicken pox my mother tried to soothe with great chunks of cotton wool saturated in Calamine lotion.
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. Nor had the death of my husband exactly two years following my diagnosis. Given this trauma, you would think I no longer waste precious minutes fretting over things that most likely will never happen – but I do.
So cancer happened, and I wanted everyone to feel as sorry for me as I did for myself. I wanted to howl about the unfairness of it all at a no-holds-barred pity party. I did not want to be a warrior with a pink ribbon tattoo. I could not have predicted the impact of the let-down, placated by people I consider my friends who told me I had no need to worry because I was strong and a fighter and someone to whom God would give only as much as I could handle. I was told I should be grateful for my good fortune 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 – what they considered a tummy tuck and a boob job following the amputation and reconstruction of the right breast I wish I still had. I recall a lunch time conversation during which a colleague congratulated me on still looking like myself – “No one would ever know you had cancer” – and five minutes later someone who barely knew me chided me when she found out I wasn’t “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 basically shut up and just get on with it. She told me to “put my big girl panties on,” with a nod to God because, you know, I could handle what He had given me. There were others who have still to utter the word C-A-N-C-E-R in my presence, let alone inquire about how I have fared with it all. I make excuses for them, guilty that I make 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. I envy their good health. More guilt.
So the dance continues. If I don’t mention it, you won’t mention it, and maybe it will go away. Or maybe it won’t, and then what will we do? Will we swallow the words we are too scared to say and instead spit out tired cliches about doing battle and platitudes about the power of positive thinking? Trickier, I suspect, to ignore the recurrence of cancer, to feign indifference to it, once it has been roused from its slumber. What do you do, especially now that they have bestowed the ‘survivor’ mantle upon you?
a “survivor” as anyone living with a history of cancer – from the moment of diagnosis through the remainder of life. National Cancer Survivors Day affords your community an opportunity to demonstrate that it has an active, productive cancer survivor population.
Was I surviving before I discovered the lump myself? Is that how we would describe my living – my life – before it was officially declared “surviving?” Is that the label we would ascribe to it, after pronouncing as cancer, the disease that flourished, undetected for as many as 7 – 10 years, defying four mammograms, hiding in tissue no one had bothered to advise me was dense? Or is there another word for what I was doing before the diagnosis? A better word? Was I formerly a more active and productive member of the population? Trying to find the right word, I stumbled across a jarring Times of India headline Gutsy fighters took on cancer, and won. Took on? Took on Cancer? Won? Those who have been killed by cancer, are they “less gutsy” than the rest of us? Losers?
Of all the words that no longer connote for me what they once did, “survivor” is the one that leaves me entirely flummoxed. As I have mused previously, the diagnosis has forever changed certain words for me – “staging” I no longer immediately associate with the theater; “fog” I am more apt to attach to a state of cognitive loss rather than one of Van Morrison’s misty mornings or that cloud that often obscures Pacific Coast Highway on a summertime road trip; and, “cure” of course is no longer the idiomatic “hair of the dog that bit you” but a terribly elusive thing all wrapped up in a pink ribbon. Even “sentinel,” which was reserved, until cancer came calling, for a lonely cormorant perched on a post in the shallow waters of sleepy Morro Bay. I now know sentinel as the first node to which cancer cells are most likely to spread from a primary tumor. Until one of my post-surgery appointments, “infusion” was something done to transform olive oil into a gourmet gift. But because I had turned left instead of right upon leaving my oncologist’s office, I missed the exit and instead found myself on the threshold of the infusion suite, a room I didn’t even know was there. Feeling as though I had intruded, I fled. But not before I had registered a row of faces of people sicker than I. In one microscopic moment, I made eye contact with a woman and wondered if perhaps she was cold because, as I turned away, I noted a quilt on her lap. I turned away and thought of Shakespeare’s “enter fleeing” stage direction. Ashamed. Guilty.
For a year or two, I told myself I was beginning to make some kind of order out of my life since cancer. Or my life with cancer. Or my surviving cancer. I was learning to make room for it, to make sense of it no less. Well, that was a bit premature, wasn’t it? Cancer makes no sense at all.
I do not feel gutsy. Nor do I feel like a winner. Nor am I comfortable with being described as a survivor. What then? I am a cancer patient who still shows up for her scans and blood tests. Such things do not impinge on my life to the extent they would if the disease were more advanced – in other words, if it spreads. And it might. That’s just the way it is.
A profound sense of guilt accompanies this awareness. It confounds me and reminds me of growing up in Northern Ireland – at a safe distance. Except for the time when our kitchen window shook because a bomb had exploded somewhere close by, or the time a bomb exploded outside Halls Hotel. Or another time when my brother, as a new journalist, had to interview the grandmother of three little boys murdered, burned to death on July 12, 1998. Richard, Mark and Jason, just eleven, nine, and seven years old, had been asleep when a petrol bomb was thrown through the window of their home. Or that Saturday night in Belfast, when my college friend Ruth and I returned to her brother’s house where we were staying, only to find out that her car had been stolen and set ablaze as a barricade on the other side of the city. Strange that cancer has taken me back to these places so many times, and to things I haven’t thought about in years . . .
In May the Lord in His Mercy be Kind to Belfast, based on his interviews with the people who lived there, Tony Parker makes the unsettling but astute observation that those born and brought up in Northern Ireland have a mutual need to know, from the start, about a person’s background, so they can proceed safely in the dialogue, the longer relationship, without saying the wrong thing, “the wrong word.” The schools we attended, our last names, the way we pronounce an “H” all became clues to help establish “who we are.” “Derry” or “Londonderry?” “The Troubles,” “the struggle, or “The Irish Question?” “Ulster” or “The Six Counties?” In the country of my birth and in cancer country, I find that myth features prominently, in particular, the myth that victims have in some way, brought it upon themselves. The calendar takes on a new significance, too. We could fill a calendar with anniversaries, those of Bloody Sunday, the bombing of Omagh and Enniskillen, Internment, the Twelfth of July. Literally untouched by these, but changed nonetheless. A survivor? The images are indelible. Iconic. Father Daly waving a blood-stained white handkerchief, the carnage on Market Street in the heart of Omagh, orange sashes, bowler hats, Lambeg drums, and The Guildford Four. In the end, I suppose every day marks an anniversary of something.
On the question of language, the right words to use, there is no easy answer. Within terrorism, within cancer, and the respective wars waged against both, are words and phrases that seem to sanitize and even glamorize the suffering and pain, that hide the horror and heartbreak visited upon ordinary people going about their daily lives. I am thinking again of County Down writer, Damian Gorman whose words I rediscovered not too long ago while ruminating on the complexities of cancer, the politics of its lexicon. He describes the bombs, bullets, the “suspect incendiary devices” all too familiar in 1980s Northern Ireland as far less deadly than the “devices of detachment” its people used to distance themselves from the violence. Aware of it, yet removed from it.
“I’ve come to point the finger
I’m rounding on my own
The decent cagey people
I count myself among …
We are like rows of idle hands
We are like lost or mislaid plans
We’re working under cover
We’re making in our homes
Devices of detachment
As dangerous as bombs.”
Detachment is dangerous, but perhaps it is easier. Pondering the metaphors of battle that have been applied to the John McCain story, I find myself drawn back to the day before my surgery. In my mind’s eye, I see the kind radiologist who said my name looked into my eyes and said, “I’m so sorry you’re here,” right before he shot three painful injections of radioactive dye directly in and around the nipple of the right breast that would be removed the next day. I wince, even now, writing about it. But what I remember most and more than the sting of those injections is the genuine kindness of that radiologist right before he administered them, and that nothing is stronger than the human heart.
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, from 2016 -2018 focusing on how everyone – as a collective or individually – can do their part to reduce the global burden of 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 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.
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 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 together for surgeons bearing good tidings. Neither feels safe nor secure. She fights to keep the tears from falling, squares up with false bravado to keep the fear at bay, to confront the wild fear 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 she is confounded by it and 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? It was that time reserved for rebelling a bit, for rolling your eyes at your mother’s taste in clothes or music because 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 my 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 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. Know your body!
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.
me with Sherman Alexie
