Category Archives: Language of Cancer

a pink ribbon made a blogger out of me

12 Saturday Oct 2013

Posted by in Blogging, Breast Cancer Awareness Month, Breast Cancer Treatment, Cancer Language, Culture of breast cancer, Diagnosis, Early Detection, Language of Cancer, Mammograms, Pink Ribbon Culture, Pink Ribbons, Shopping, Susan G Komen Foundation

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“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.

“See? There’s that cute little ribbon.” in my tissue. In me. 

Branded.

Speechless.

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.

By the time I went home that day, I didn’t want to hear anymore of Nancy Brinker’s “conventional messages.“ I didn’t want to see pink ribbons embellishing yogurt lids and bottles of water and Facebook pages. Fat chance.

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 1PM 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.

Benign. Benign. Benign.

booby-trapped this October?

24 Tuesday Sep 2013

Posted by in BC Action, Belfast, bombing, Breast Cancer Advocacy, Breast Cancer Awareness, Breast Cancer Awareness Month, Breast Cancer Treatment, Cancer Language, Culture of breast cancer, Language matters, Language of Cancer, Memoir, Memoir, Pink Ribbons, Pinkwashing, Sexism, Shopping, The Troubles, Themes of Childhood

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boo·by trap 

Meaning: A practical joke. Also a concealed and possibly lethal trap.
Noun: A thing designed to catch the unwary, in particular
Verb: Place a booby trap in or on (an object or area): “the area was booby-trapped.”
Synonyms: snare, trick into doing something
 

“Thirty days hath September, April, June, and November . . .”  the rhyme reminds me, as it has done countless times before, that October has thirty-one days, and it is just around the corner. Thirty one days to make us all impossibly more aware of breast cancer. Thirty one days of purchasing pink and running towards towards “the cure” (two words trademarked by the Susan G. Komen Foundation just in case you’re thinking of hosting a similar event “for the cure). The White House will undoubtedly turn pink again and the cashiers at the grocery store will ask me for a dollar towards breast cancer. And when November 1st eventually arrives, the pink ribbons will be unpinned from lapels, the grocery stores will turn from pink to the colors of Thanksgiving. I will breathe a sign of relief, but I will, of course, still have breast cancer.

I am an unwilling conscript to this battle against breast cancer. I don’t want to be a fighter or a survivor or a pink warrior. I’d prefer living without having to hold my breath every so often, wondering as I did some forty years ago in Marks and Spencers on Belfast’s Royal Avenue, if the bomb scare is just that. A scare. A hoax. In my world today, the suspicious devices come in the form of tumors and test results, in waiting and worrying, in scheduling more time to spend in waiting rooms. And they come in pink ribbons and half-truths about mammograms and early detection. The whole sorry business saps my energy. I have things to do. Mundane things, but they matter nonetheless – laundry and shopping. I like my clothes clean and the refrigerator stocked. But in October, I avoid the dry-cleaners, but I cannot avoid the grocery store and its shelves of pink merchandise.

For eleven months of the year, reconnaissance missions to the dry-cleaners or the grocery store pass without incident. No camouflage is necessary and only minimal intelligence required. In October, it is impossible to pass through the Safeway checkout line without being hijacked by a cashier whose job it is to ask me to donate a dollar for breast cancer. If I say yes, she will bellow into the intercom, “I just got a donation for Breast Cancer. Can I get a Woo Hoo?” And, as they scan coupons and fill bags, paper or plastic, with other people’s groceries, a chorus of cashiers and bag-boys will, as automatons, respond, “Woo Hoo!” and I will flee. I will feel only slightly guilty that I asked how much of my dollar would support breast cancer research, knowing that my question rendered her uncomfortable. But I will be more concerned that she has not been told how to answer my question except with a receipt and a “Have a nice day!”  The young woman at the cash register is caught in the same trap with me –  woo-hoo!

There are other grocery stores, less pink-ified, but they are few and far between. Even speciality stores are dressed out in pink, in an almost festive observance of breast cancer awareness month. I suppose you could call it a breast fest. Bizarrely, this brings to mind Loyalist areas in the Northern Ireland of my childhood.  In anticipation of “marching” season, Union Jacks and flags bearing a red hand hung out from bedroom windows of council houses, proclaiming allegiance to the Crown. Red, white, and blue bunting stretched from house to house, and pavement curbs were roughly painted in homage to British rule. Slogans spray-painted on otherwise scrubbed gable walls, echoed an imperative “Belfast Says No” that hung above the city’s hall in the 1980s and in our faces.  It was unavoidable even for those of us who wanted to remain anonymous, ordinary people for whom the moral imperative was peace. Boldly marking territory in no uncertain terms,  those banners and badges were divisive, as incendiary as the booby-trapped cars that lay in wait for the part-time police officer who, in a hurry to get home for a birthday celebration, failed to check under his car before turning the key in the ignition.

Perhaps it is over-wrought to compare breast cancer awareness campaigns to shows of loyalist strength that often culminated in sectarian violence and murder. The parallels are real to me. The bunting that zig-zags across the skies of the Shankill Road is not much different from the arch of balloons that float above the “KomenPhoenix” finish Line in downtown Phoenix. I did not participate, much to the chagrin of acquaintances who know I have breast cancer. Why wasn’t I part of Komen’s “circle of promise?” they asked. Couldn’t I tap into the power of positive thinking? Why do I have to be so negative about breast cancer? Come on! Can’t you ferret out a silver lining? Make a silk purse out of a sow’s ear?

“Imagine a life without breast cancer!” the Susan G. Komen Foundation urges. Alright. I imagine it every morning when I wake up or when I push to the back of my mind the possibility that the twinge in my hip is a harbinger of recurrence. I imagined it during an unguarded moment in Bed, Bath and Beyond, the sole item on my agenda, a new duvet cover. I had barely crossed the threshold, when I was told to Fight like a Girl:

Even the tic tacs on display were pink, as was the pasta and the over-priced machine used to make it. I did my due diligence and visited the The Pasta Shoppe website, where I learned that 10% of proceeds from the sale of fun-shaped pasta will go directly to the Susan G. Komen Foundation.

Susan G. Komen 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. The organization subsequently established by her sister, however, has failed to appropriately address the kind of cancer that killed her. Instead, the Komen foundation has relentlessly emphasized early detection and awareness. Sealed it with a pink ribbon, it is just not good enough. Not for me. Not for my daughter. Nor yours.

What would Susan G. Komen say about our progress, or Rachel Carson, who fifty years ago, warned us about pesticides and their link to cancer. Breast cancer killed her too. She would have something to say, I know, about last year’s limited edition pink ribbon tic tacs. While I do not know how much of the tic tac proceeds went towards breast cancer research, I know they contain corn gluten, which is cause for concern. For Susan and for Rachel, for you and for me, Breast Cancer Action urges us to ask these Critical Questions Before You Buy Pink: 

  1. Does any money from this purchase go to support breast cancer programs? How much?
  2. What organization will get the money? What will they do with the funds, and how do these programs turn the tide of the breast cancer epidemic?
  3. Is there a “cap” on the amount the company will donate? Has this maximum donation already been met? Can you tell?
  4. Does this purchase put you or someone you love at risk for exposure to toxins linked to breast cancer? What is the company doing to ensure that its products are not contributing to the breast cancer epidemic?

Breast cancer can no longer be covered up with pink ribbon purchases that manipulate us into feeling good about ourselves. It is an epidemic but it has been trivialized, glamorized, feminized. In October, it is more about the boobies and less about the disease. The slogans and the pink wristbands, the trappings of breast cancer become fashion accessories. For thirty-one days, we are told “to save the tatas” and reminded to “feel the boobies.” Baby-talk, sugar and spice and all things nice, the stuff of fairy-tales. Even the President of the United States will sport a pink breast cancer awareness bracelet.

I may be way off the mark, but somehow I cannot imagine our nation in the grip of a “Feel my Balls” campaign. Can you? In 2013, America is still confounded by sex and gender; thus, guarantees of life, liberty, and the pursuit of happiness for everyone, ring hollow. Somewhere within the ‘Spaghetti Junction’ of stories that spin to advance political agendas and generate massive profits, lies the truth about the way things are and how they appear to be. A glamorous pink ribbon wrapped around an Estee Lauder model seems more socially palatable than a bald and fragile, vomiting cancer patient in the throes of yet another grueling, poisonous chemotherapy treatment. And then there are the men with breast cancer. What about them? What about the families of over 2,000 men who died from breast cancer in 2012?

Confronting the chilling reality of breast cancer is non-negotiable. It is time to ask the questions that will quell the rising tide and to demand answers, to hold accountable those in power to mandate mandate meaningful action, beyond the breasts and into research of the cancer that kills.

It was a decade ago when BBC News reported that then United States Attorney General, John Ashcroft, asked the United States Department of Justice to shell out $8,000 for drapes to cover up the exposed right breast of The Spirit of Justice statue. The offending art-deco figure was often photographed behind him while he spoke to the media. Was it too life-like?  Too real? Too much woman for him? Would a pink ribbon in front of the White House have been more acceptable? Regrettably, I think it might.

Breast cancer is ugly, and it hurts. Awareness campaigns hurt too, especially when they focus on the same old stories of early detection and treatment regimens that have been prescribed for decades –  some combination of surgery, radiation, chemotherapy, hormonal therapy. Especially when such campaigns focus on everything other than what must be done to figure out what causes breast cancer in the first place, how to prevent it, how to stop it from metastasizing. What I wish I had known before running all those races and believing that the mammogram was the perfect test is what METAvivor President, CJ (Dian) Coreliussen-James warns:

“People do not realize that metastatic breast cancer is widespread and deadly, and that it strikes on whim and takes 41,000 American lives every year. Survivors think they are safe because they are 5 years out … or were diagnosed early … or were told they are ‘cured,’ but MBC plays by its own rules.People diagnosed at stage 0 as well as 30-year survivors can and do metastasize. You feel great one day and the next day learn you have MBC. Your life can change that fast.

So what will you do this October? How will you navigate the sophisticated booby-traps all around you? Be vigilant. Don’t fall for it just because of the nice pink ribbon. Ask questions.

It’s not all about the boobs . . .

 

breaking bad news & long distance love

03 Friday May 2013

Posted by in Blogging, Breast Cancer Awareness Month, Culture of breast cancer, Diagnosis, Doris Kearns Goodwin, Facebook, Family, Hair, Jackson Browne, Language of Cancer, Little Feat, Lowell George, Memoir, Memoir, Memory, Mother Daughter Relationship, Music, Pink Ribbons, Sherman Alexie, Social Media, Soundtracks of our Lives, television, Van Morrison, Writers, Writing

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Yesterday, I discovered Rendezvous, “a digital meeting place for the globally engaged, hosted by the International Herald Tribune.” As such, Rendezvous is a global tribe seeking “to inspire international discussion and intelligent debate that enlivens the global conversation.” Sounds like the perfect place for members of the Irish diaspora, scattered far and wide across the globe. People like me. While my circumstances were different from my grandparents and so many irish before me, who were obliged to leave home because of famine or poverty, or diminished possibilities and broken promises, I can barely remember a time when I did not harbor a desire to come to America, eager to take what Doris Kearns Goodwin calls that “spectacular risk.” And, although I have now spent almost half my life in these United States, there are still unguarded moments of dislocation that bring a crushing loneliness and a cry for “home.”

Before Skype, it was by telephone that bi-continental families like mine delivered and received the most important news of our lives, from tidings that could not be shared soon enough: “I got the job!” “I’m going to have a baby!” “It’s a girl!” to the shrill ring that will startle a slumbering household too early in the morning or too late at night to be anything good. I distinctly recall such a moment, one September morning before dawn broke in Phoenix. Barely awake, I answered the phone to hear the anguish of a lifelong friend calling out from a village in Wales, “My darling is gone! My darling Kev is gone! Gone!” her husband killed outright in a car accident. Then the phone ringing in the hall of my parent’s Castledawson home, so far away, on a Friday night in November, after The Late Late Show. I can imagine my mother glancing at my father, the two of them held momentarily in a kind of dread, fearing the news that might come about my brother or me.

Like me, my mother can tell by the exhalation of the first syllable of  “hello,” if something is wrong, so I had avoided her for a week. Taking advantage of the eight hour time difference, I had made myself unavailable ever since I found the lump. Away from our home phone, I could shop or run for miles or do anything other than talk to my mother about the lumpish thing in my right breast, the MRI, the three-then-four tumors, the core needle biopsies, and the pathology report. Across distance and time, avoidance and denial cleverly converged, with me convincing myself that when it all turned out to be nothing, it would unfold as the kind of melodrama that so effortlessly fills up a long distance phone call with my mother on a Saturday morning.

Waiting for the results of those biopsies was excruciating, and it was lonely. More than anything, I wanted to talk to my mother, my best friend; to drive to Sky Harbor airport and hop on a plane; to go “back home” where it was probably raining or about to rain. Home to endless cups of tea or something a wee bit stronger and well-meaning people who love me and don’t want me to die, all of them waxing poetic about how things could be worse. For the uninitiated, a hallmark of growing up in Northern Ireland is that no matter what befalls you, someone is bound to remind you – and it will be strangely comforting – that there is always some poor soul worse off than yourself. That, and you’re not half thankful enough. But I could not bring myself to call my mother without having something definite to tell her. My mother and I don’t care much for loose ends. We like a tidy ending. Of course, I could tell her about the tumors. But what kind? Benign? Malignant? Wait and see. Treatment? Surgery? Chemotherapy? Radiation? All possible. Wait and see. The Breast Patient Navigator had taken over and was beginning to help me navigate a trek through “wait and see” with a team of people that would also wait and see. Being far away from home made the waiting even worse.

If the news was bad, how would it be broken?  How would I break it to my mother, and she so far away? My seventy three year old mother who thought her work was done, the real worrying over, her two children well-raised with children of their own, making their way in the world and causing relatively little trouble. I even found the Regional Guidelines for Breaking Bad News published by the Northern Ireland Department of Health, Social Services, and Public Safety. I confess it had never occurred to me that there were so many steps in breaking bad news. The day before my diagnosis, I finally gave in and told someone from home, because someone from home would know what to say, soft albeit shocked and colloquial, funny even. But not my mother. Not yet.

photo (64)Thus would begin the trail of over 3,000 Facebook messages with my brother whom I adore. My wee brother, now a man. A husband, a father of three, in the middle of his life on the other side of the ocean and on the opposite end of Ireland from my mother. I knew he would make me laugh, and I knew he would keep a secret. As he has always done. 
When Rendezvous asks how we expatriates cope with a death or a health crisis on the other side of the ocean, my response is that it is always with a sense of un-reality, with guilt over things that should never have been said, and with promises that it won’t be too long before a visit home, because you’re a long time dead, and then a rush of communication, words tumbling over words, such as this between my brother and me.

Ostensibly out of the blue, but the day before my diagnosis, I sent a message to him:

November 10, 2011

  Can we talk this weekend?

  Not sure when we’ll be in the house exactly; we might take the lads out if the weather is fine, because it gets awfully claustrophobic if we’re cooped up inside all day, but I’ll drop you a line on FB and let you know. Is all okay?

  No – will know for sure in 16 hours. Do NOT alarm the folks.

  Sixteen hours? That means there’s only eight to go. Sounds intriguing. I hope it’s nothing serious. Hopefully your new day will begin with some positive news  Drop me a line on FB when you know. I’ll be here until 5pm our time, which is another four hours, so I guess you won’t know by then, but if you’re up and about, let me know what it’s about x
 November 11, 2011
 So… what in tarnation’s going on Yvonne?
  
  PROMISE you won’t tell ma. You have to promise me. PROMISE you won’t tell mam. PROMISE.
  
 But sure of course I won’t. Unless you’ve murdered someone, natch …

  OK  … here goes … I found a lump last week. Went to doctor for mammogram. Found two tumors in right breast. Then on Wednesday they found another. Did three biopsies. Find out the results today. Do not tell ma. If you tell her, I will NEVER EVER tell you another thing. EVER.

  Fuck. Of course I won’t, Yvonne. Cross my heart. Jesus. I’m shell-shocked here. How are you feeling, if that isn’t the DUMBEST question in the world.
  Well … scared. The core needle biopsy wasn’t too bad. kind of sore. just after they say “tumor,” you don’t hear anything else. Sophie doesn’t know. Ken’s being all brave, but I just keep losing it. Want so much to tell ma, but the distance and the worry is too great.  So now I’m crying. Again. So scary. It’s the not knowing and the waiting that is so cruel. I hate it.
 The last place you want to hear the word ‘tumor’ is in that context. Yvonne I’m stunned. You poor, poor thing. I am hoping and praying and engaged in all manner of ‘offering it up’ here. Telling mam would be SUCH A BAD IDEA, and of course I will not breathe a word. Oh, my dear God.
   I know. You’re right about ma. I know you’re right. The waiting would destroy her, and daddy would probably wander the roads, all stoic and stone-faced, while cursing the miles and miles between us. Anyway, I’m trying not to break in pieces … we find out at 1:30.  BTW … can I just say every woman I know admits that they do not do self-exams. And what was the bloody point of all those clear mammograms?
 Okay, just take a VERY deep breath. It’s out of your control for the next few hours, and there is NOTHING you can do in that time except to remain as positive and strong as you possibly can. So, so easier said that done, but you’re … a tiger, and whatever happens, you can deal with it.
  Well thank God you didn’t say cougar.
  Hahaha. See?

  AND …. I’m pissed off because I’ve been so good at doing the Couch to 5K thing. I was beginning to think I would run in the Belfast Marathon.  

And … I got great tickets to the Bob Seger concert. And … even my hair looks better than average these days. 
Well, at
 least I’m in America and have good insurance. Saw my doctor the day after I found lump. Had mammogram next day and the biopsy two days after that.
Hello??? Are you still there???
   Sorry, I’m still here. Boss just stopped by for “a chat.”

  Oops. Sorry. i forgot you were at work. I’ll let you go. will keep you posted. Please, please do not breathe a word. Oh God. Now I have visions of you trapped in a cubicle with a demon boss and our Facebook chat minimized on the screen.

   I will not say anything, Yvonne. You have my word, and my prayers. Drop me a line on FB when you know, please, and I’ll see it when I get up. I’m all confused. 1.30 is what time?? Oh god. Hold on, and I’ll work it out…
   i think  9:30 at night with you. Oh, Keith, I just want to hear benign, benign, benign. Three benig
   Drop me a line if you get a chance, and I’ll give you a call. Please try not to get too distraught until you know. Only knowledge will give you any real power in this situation. And there are all sorts of possibilities. And don’t forget what Thomas Wolfe wrote:
“America — it is a fabulous country, the only fabulous country; it is the only place where miracles not only happen, but where they happen all the time.”
  P.S. – I’m not an avid reader of the great Mr Wolfe, but I came across that passage recently when searching for something else, and I just recalled it. Saying prayers for you now, so go do something to take your mind off things for a while. Go for a walk in your favorite place, and focus on something beautiful, instead of being locked into that horrible mental waiting room.
  Alright, grand. On old Tom’s very high note, I’ll sign off. Thank you Keith. XXXXXX

  Love you and take care and good luck xxx

BTW – I don’t know if it was the Electric Kool-Aid Acid Test Man-In-The-White-Suit Tom Wolfe or n the late great early 20th century novelist, Thomas Wolfe. I suspect the latter, but it is a good one nonetheless.
P.S. A couple of really fun things to focus on for right now include 1. your lustrous hair, and 2. the enviable prospect of seeing the man known as Seger rocking the house with his Silver Bullet ensemble this Yuletide.
Oh, Yvonne you poor ‘oul divil. What a horrendous day for you, but hopefully, this dark corridor will lead to a better, brighter day. Love you. Talk later. K xxx
   Okay — I’m off now to get my bus home, so I won’t be talking to you or be in touch for a while. I don’t want to say anything at home either, because you know how sensitive kids can be to that sort of talk. I’ll say nothing at home until I know more. Fingers, thumbs, legs, toes, all limbs are crossed, and I hope to hear good news from you later. Take care Yvonne. Love to Ken & Sophie. xxx xxx xxx
  Thank you!!! So hard to keep it from Sophie … Amanda is taking her out under a babysitting ruse …

  

Talked to ma.

I have breast cancer.

MRI next, then surgery.

Game On.

November 12, 2011

   Spoke to mam this morning. She’s shocked, but she and dad are fine. Just want you better. I don’t think I’ll be back until late tonight so hopefully talk to you tomorrow. Hope Sophie and ken are okay. Love you xxx ooo
November 14, 2011

   Hi Yvonne — how are you doing today? xox

   Just got up … can’t find specs so don’t know what I’m writing!! Oh … it ranges from being wildly indignant to feeling just plain sorry for myself. Sophie and I have been making irreverent jokes about it, but then Ken got mad at us. So we have to watch what we say, otherwise there will be a sharp outburst of ‘Goddammit-your- mom’s-sick-it’s-not-funny.’  I need to look for my glasses … will chat later

.  Oh Jesus — even with your vision fettered by the lack of spectacles, that’s a pretty clear picture of what’s going on!!! I’m sure you’re on a rollercoaster. Mam said you were going to go to work today. Maybe that’s for the best. Hope Sophie is okay too. Drop me a line later if you’re in work and want to skive. Hope that the work environment is not too stressful. That would be the last thing you need … Talk to you later xxxx

   Hey you … I am waiting for Sophie to get out of school. Work was a fabulous distraction. I keep thinking I must be making it all up, so I can’t help being very irreverent about it when I am around people who seem to care about me. Ken is scared and doesn’t understand that I’m not really making a joke about it. I am just coping. Seriously, he might explode with a “Give my daughter the shot!!” a la Shirley McClaine in “Terms of Endearment.” Sophie, on the other hand, is darkly funny. Just today, she raised a haughty eyebrow and gave me a knowing look when the lady at the drugstore asked if we would be at all interested in donating a dollar to cancer research. BTW Where the hell did all those pink ribbons come from? Seems I have seen more pink ribbons since last Friday than in my entire life.

 Oh God, I’d say you must be seeing them everywhere you look. I’m sure Ken will be fine, but he’s probably just scared shitless and feeling helpless as there is nothing he can do. I know how I felt last year when Ita was lying in a high dependency unit surrounded by a team of specialists who threw me out of the ward for getting in the way. Not very nice really, especially when it left me at the mercy of nuns loitering in the public waiting area, waiting for their chance to do their good deed for the day!
P.S. Speaking of nuns, I was walloped by a four foot nun in the bus station this morning, because she walked into the umbrella  I was carrying under my arm. Silly me. Of all the things  I think about on my way to work, I hadn’t considered the etiquette of umbrella transportation, and the inherent dangers to undersized elderly members of the religious orders who don’t look where they are going. She really thumped me too. Drop me a line later.
 November 15, 2011

  Accosted by a nun!?!  Oh God, that is so funny – I have a great mental image of you being attacked by a little nun. I never see nuns. Where are they kept in Phoenix, I wonder? As for the pink ribbons. Did I tell you about what Sophie calls “the cancer goodie bag?” After the kindly but somewhat annoying nurse (breast care navigation specialist) gives you the worst news of your life along with just a touch of how prayer might help, she sends you off with the kind of tote bag you get at conferences, filled with brochures, a 10 yr planner, books with pithy titles like ‘Finding the Can in Cancer’ 

I wonder should I start a blog … with a clever title along the lines of staying abreast of a life that used to be scheduled by me.

  Oh God… truth is stranger than fiction. Your encounter with the ‘breast care navigation specialist’ (are you serious with that title, or being sarcastic??) is straight from the surgery of Dr Julius Hibbert from The Simpsons. Sounds like young Sophie has the right attitude about all of that (what mam calls) ‘trumpery’. it’s just bloody trinkets, isn’t it, and a bit of a growth industry. The Can In Cancer is right up there with ‘There Is No “I” In Team’… or, again, are you being acerbic again. ‘Tis hard to tell… But even if you are, you’re absolutely right. Whoops, better go, will write later…
  Acerbic … and I kid you not.
   I’ll bet… God I’d forgotten how hairy it is trying to have a conversation on Facebook in an open-plan office. But definitely not as difficult or full of Esperanto and code words as a telephone conversation, though, eh?
November 16, 2011
  Hey Yvonne — just a quick note to wish you well for later today. Will be thinking of you, Big Sis. Really wish there was something I could do to help. xxx
  You already are helping. Thank you for just staying in touch. It is a wonderful byproduct of an otherwise screwed up situation. 
  I know. Anyway, I’m rooting for you. Are you not terrified?  Ken and Sophie must be out of their minds, but you’re in great hands there, and, that, even more than the medical intervention, is what counts. Okey doke, am in work, so I’d better get back to it, but keep in touch as soon as you know anything, and hopefully we’ll get a chance to talk on the phone again soon. Work usually turns everything upside down during the week, because of the commute to and from Cork, so sorry I can’t talk, but will have a chat this weekend? That’s it for now. Fingers crossed, and deep breaths, now… xxx
  yeah …Ken cracked a bit last night. It made me feel very sad. It’s our 20th anniversary today. Twist the knife some more, right? surgeon already wants to see me on Monday morning and hasn’t even seen the MRI yet so that makes me scared. I will send you a note later. 

  Ah Jeez… happy anniversary. 

Talk to you later. Am going to catch bus soon, so drop me a line if you get around to it later, or if not, don’t worry about it, just do so sometime in the next 24 hours, cos I don’t want to be hassling you on the phone like a big galumphing lummox. Love you x
 November 16, 2011
  Hey … my Breast Care Navigation Specialist will have the results of MRI tomorrow. Had a large G&T earlier following minor breakdown when I had to check the YES box on the form ‘Have you ever had a cancer diagnosis?’ 
  Oh Jesus. Mind the gin, otherwise it’ll lead to more tears, if I know my gin.   Oh good God, the official form ‘leveler’ as well. There’s nothing like that to lay you low. Keep on top of things, Big Sister. It will all come out in the wash. I know that patience is not something you’ve EVER had much time for, but try to hang in there, because you’ll tie yourself up in a knot.

In other news, well, it’s not really news, but just to let you know I was thinking of you in a much more positive context earlier on. On the bus. I was looking out at the pissing rain streaming down the window, pleasantly surprised when ‘Main Street’ came up on a shuffled playlist on my iPod. God bless Bob Seger. Do you know what I love about that song? The way he manages to take a multi-syllabic line like “I remember standing on the corner at midnight trying to get my courage up”, and render it thusly: ‘Imema’stannin’thecawnnat’midnite (death-defying pause)T

ryn’ta get mah courage up.’ 

Fantastic. That’s like a cross between Sinatra and Ernest Hemingway. Genius delivery. Sorry for the diversion. Just reminded me of your old turntable on the floor of your bedroom on the Dublin Road (and our Penny the poodle growing dizzy as she watched the LP revolve to its conclusion). Anyway, “laters”, as ‘the youth’ would say these days. Love xxx

   i dont’ care what state I’m in, but I am bound and determined to see Bob Seger on December 23rd and to have some sort of Christmas. Admittedly, I may have to play the cancer card with a bit of guilt to get Sophie to come along, but whatever it takes . . . surely, one day, she will tell her friends that her mother was very hip and cool with great taste in music?

Oh, the forms are laughable …. today I had to fill out one which asked if I’d ever had cancer (other than present) on the same page as “What is your chief complaint/reason for coming to our office today?”

Anyway …. have you ever read anything by Sherman Alexie?? I met him at a book-signing recently after he gave a very funny talk during which he read from War Dances.  Anyway, he talks about how cool it was to watch the screening of his Smoke Signals, a very cool little indie film, sitting next to Bruce Springsteen. Can you imagine sitting at the screening of a film based on a book you wrote with The Boss beside you?? Anyway, he wrote a poem about how, like me, he used to make a great mix tape, the way we have done so many times. Here it is:

Ode to Mix Tapes By Sherman Alexie

These days, it’s too easy to make mix tapes.
CD burners, iPods, and iTunes
Have taken the place
Of vinyl and cassette. And, soon
Enough, clever introverts will create
Quicker point-and-click ways to declare
One’s love, lust, friendship, and favor.
But I miss the labor
Of making old school mix tapes– the mid air

Acrobatics of recording one song
At a time. It sometimes took days
To play, choose, pause,
Ponder, record, replay, erase,
And replace. But there was no magic wand.
It was blue-collar work. A great mix tape
Was sculpture designed to seduce
And let the hounds loose.
A great mix tape was a three-chord parade

Led by the first song, something bold and brave,
A heat-seeker like Prince with “Cream,”
Or “Let’s Get It on,” by Marvin Gaye.
The next song was always Patsy Cline’s “Sweet Dreams,”
or something by Hank. But O, the last track
Was the vessel that contained
The most devotion and pain
And made promises that you couldn’t take back.

November 18, 2011

  Have never heard of him, Yvonne. But will check him out. He sounds intriguing. No more intriguing than the forms you’re having to fill in. It’s worse than The Office.
You have cancer. Do you (a) strongly agree; (b) agree); (c) disagree; (d) strongly disagree; or (e) Don’t know. Grrrr.
  BTW Limerick is not the place to see cool little indie movies.  The recession has wiped out the home DVD rental stores, and at the two omniplexes (omniplexi?) they only put on the kinds of things that are guaranteed to fill seats. Was just looking at the link on Wikipedia though. Sounds good, so I’ll have to see if I can get my hands on it. How you feeling today?
  Much better. Not quite a Woo Hoo, but so happy that chemotherapy is not in my immediate future. I just don’t know if I could have handled it. Keith, you must, must read Sherman Alexie’s work. He is a fab writer. “White people gave us Custer, but they also gave us Bruce Springsteen!” 
November 21, 2011
  Well … they cannot save the breast. Had genetic testing, result of which will determine whether to take left breast and ovaries as well. Just like that!!! One stop shopping. Didn’t cry all day until I called ma, and then I lost it.
  Oh Christ Jesus. You poor thing, Yvonne. When will you know the results of the test? What an awful thing to have to deal with. I just don’t know what to say. Drop me a line later if you’re up to it. xxx
**************

In retrospect and in response to the question posed by Rendezvous, it was this Facebook chat with my brother over the course of ten days that kept much of the fear at bay. During the scariest time of my life, I was fed by these tiny snippets of humor and nostalgia and sorrow and fear traveling at lightening speed from one continent to another. Connected in an ephemeral, electric silence but with nothing to hold on to,  grown children far away from their mother, vulnerable once more, seeking shelter from the storm and long distance love.

images

 . . which takes me back to the summer of 1988 when my

brother came to see me in Phoenix.

That visit coincided with one of the many reunions of my favorite band, Little Feat, then riding a comeback wave, unimaginably without the growl of the late Lowell George and his mean slide guitar, but still with the inimitable Bill Payne on keyboard.

At the time, I had all Little Feat’s albums. I loved the cover art which was as funky as their music.

In the same way that it was important for me to stand on the actual corner of Winslow, Arizona – not necessarily a fine sight to see – I have also driven from Tucson to Tucumcare and Tehachape to Tonopah – because Little Feat sang about these places in Willin’.  While they turned out not to be dream holiday destinations, nor did I see Dallas Alice in every headlight,  I heard Billy Payne’s grace notes on the piano and Lowell George singing about her every mile that we covered. In this vein, what was I thinking when I visited Memphis? Inexplicably, I visited Graceland and was down in the jungle room, but I forgot to make it to the lobby of the Commodore Hotel where I like to think I would indeed have asked the bartender for a light, even though I don’t smoke, immediately cueing everyone at the bar to start humming, “If you’ll be my Dixie Chicken.”

Anyway, that summer night in Phoenix, twenty-five years ago, t

he lead singer of the Pure Prairie League, Craig Fuller, would take the place of Lowell George. I remember sitting in the Celebrity Theater with my brother, wondering if Fuller could possibly pull it off, and when the band opened with “Fat Man in the Bathtub,” the crowd rose to its feet, and we knew we were in for a funky musical feast that I think would have made Lowell George happy.

 From a long distance.

 

 

vintage me . . . I’m still here

19 Friday Apr 2013

Posted by in Arimidex, Feminism, Fiftieth Birthday, Health Activist Writer's Challenge 2013, Language of Cancer, Marge Piercy, Mother Daughter Relationship, Poetry, Tamoxifen

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200732_1019668373106_1267069810_30054034_3664_nOn the first day or the last day of every school year, I force my daughter to pose for a photograph. It’s just one of those non-negotiable traditional things that comes around but once a year. All I ask is that she smile while holding a sign declaring the grade level ahead of or behind her. She used to love it, but now she doesn’t and tries to avoid me in the rush of getting ready in the morning or in the throes of “really important” homework in the evening. The latter doesn’t fly on the last day of school, but I wouldn’t put it past my darling girl to tell me she’s simply too busy getting a head start on her summer reading and has no time for her mother’s antics with the camera. In the end, of course, she always indulges me with the most sincere smile she can muster. After all, she knows I’ll show it to her grandparents, and they always get the real smiles. On the other hand, a roll of the eyes involving her entire body is often reserved for yours truly. I know, I know. It’s just a phase. 

yw50Fitting then, that when my fiftieth birthday arrived last week, my daughter decided it was time for me to hold the sign, to proclaim to the world that I was about to enter a new chapter in my life, my Second Act. Turn about’s fair play after all . . .

For today’s WEGO Health Challenge, I’m supposed to post a vintage picture of myself and wax lyrical about “the condition” I was in when it was taken.

So here I am. My condition and me.  Standing in our back yard, an impatient hand on my hip, and fifty candles on a cake inside just waiting for me to make a wish. The sign says I have been on this earth for half a century.  Congratulations are in order. Happy Birthday. Make a wish. Make fifty of them.

Happy? Yes. Healthy? I don’t know for sure. It’s complicated.

Let’s see. I look healthy; although I have to start running again. Laziness is just easier. I still have my hair. I refused chemotherapy which gave some strangers free reign to judge me, because, you know, they knew the cousin of a brother of a friend in Chicago who had cancer. And she did chemo. And she is “just fine” now. And, lest I forget, the good Lord would never ever give me more than I can handle. If it doesn’t kill me, it will make me stronger. Really? Why, yes. After all, they reassure me, I am a fighter and very strong, and they just know I have this thing beat. In fact, I should try to find the good in it, consider it a gift. After all, it is the good cancer.   I can only imagine what they would say if they didn’t think I was a fighter or strong. I’ll never know.

I’m heavier than I was a  year ago, but that’s probably good, because I weighed not much more than 100 pounds following the shock, the surgery, and the stress of that damn cancer diagnosis. At just over 5’6″. the extra 30 pounds still find a way to fit into my clothes. Snug, but enough to merit going up another size. Who wants to turn 50 and go up another dress size? No. Far easier to take the dress and the denial  to the matronly Mexican seamstress who hems things and finds an extra quarter inch or two that wil make the dress fit perfectly. I found her at the back of a barber’s shop owned by a Russian immigrant. It amused me to think of Ireland, Mexico, and the former Soviet Union all represented in a tiny piece of real estate where people can also sell gold and buy replacement batteries for their watches.

The wise doctors won’t tell me I’m in remission yet, although everyone else has decided I must be. It’s too much trouble to explain to them that, actually, no, I’m not in remission, because it’s only been 18 months since I was diagnosed with Stage II Invasive Ductal Carcinoma, 16 months since the 8 hour surgery to remove and reconstruct  my right breast, 14 months ince I started taking Tamoxifen at 9 o’clock every night, and 3  months since I switched to Arimidex which I think might be responsible for the brief but boiling hot flashes and aching joints every morning not to mention the  unfathomable fatigue. As I see it, navy may be the new black, fifty may be the new forty, but fatigue is definitely the new “f” word.

Occasionally, I’ll forget that I am being treated for cancer, that there is no cure, and that metastasis is always a possibility, the thing that scares me most. When I sit down and allow myself to think about it, I realize I need to last at least four more years before some doctor will announce, “No Evidence of Disease” (NED) at which point an angel will surely get his wings.  And that will have to suffice, because I’m not convinced we’re going to figure out what caused my cancer or how to prevent it rearing its ugly head again any time soon. Call me cynical, but there are too many women who started out with the same diagnosis and they didn’t live long enough to hear NED.

But, enough of that for now. It’s a birthday celebration after all. I’m here, and as Glenn Close told Michael Douglas in Fatal Attraction, “I’m not going to be ignored.”  I don’t feel like being invisible. Not yet.

I met a woman who wasn’t there

Marge Piercy

The CIA should hire as spies
only women over fifty, because
we are the truly invisible.

We pass through checkpoints
as if through spider webs
with only a slime of derision.

Watch television, go to
the movies (if you can afford
the ticket prices; maybe not

since older women are the
unimportant poor) and you see
only children, young females.

Older men thrive, with escorts
half their age, but older
women must die off en masse.

In middle age even with botox,
liposuction, face lifts, tummy
tucks, whatever mad torture

to the poor hardworking flesh
surgeons can devise, we
begin to vanish. Walk through

a lobby, a crowded airport:
men, children will run into you
in the obvious opinion you

cannot possibly exist. We
are inaudible too. We speak
and people turn away. Although

we know more, our opinions
are dust on the wind. Nobody
collects or records them.

We are the age’s lepers.
They would like us penned out
of sight in colonies of hunger.

You have let yourself go. You
have not refused the years
politely, firmly like an anorexic

at a dinner party. A sitcom joke,
jealous witch, bag, you are in-
tangible, for who trained

on media will stroke your soft
quivering belly, your tingling breasts.
Survivor, crone, wise woman

history’s warnings are etched
on your bones. Like Cassandra
you have witnessed wars and famines

and you foresee that wind of ash
blowing in, but to your prophecies
only your cats will listen.