Category Archives: Diagnosis

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.

so who owns your genes, Angelina?

15 Wednesday May 2013

Posted by in BRCA genes, Breast Cancer Treatment, Diagnosis, Gene Patenting, Mastectomy, Myriad Genetics, preventive mastectomy

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Actress Angelina Jolie has made very public her personal and medical choice to undergo a preventive double mastectomy.  Untold millions now know about her family history of breast cancer that robbed her of her mother, young at 56, and the mutation of the BRCA1 gene that led her to choose preventive mastectomies. Doing so reduced her risk of developing breast cancer from 87% to under 5%. All told, Jolie is happy with her decision and offers a positive account of a major surgical procedure – an amputation – that she describes as relatively simple with normal life resuming after only a few days. Her scars are minimal, the results “beautiful,” and her femininity remains intact. I am not criticizing what was surely an agonizing decision for her, but at the same time, I wished in her statement, given her presence on the global stage, her role as a UN ambassador, for some mention of the associated risks and side effects of the same procedure for other women who may not share her elevated risk.  In fairness, Ms Jolie is adamant that, given the number of lives that will be claimed by breast cancer this year,

It must be a priority to ensure that more women can access gene testing and lifesaving preventive treatment, whatever their means and background, wherever they live. The cost of testing for BRCA1 and BRCA2, at more than $3,000 in the United States, remains an obstacle for many women.

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Cartoon by Chris Madden and published by Biopoliticaltimes.com.

However, she stopped short of explaining why the BRCA test remains expensive and elusive for so many women. Fortunate to have insurance to pay for it, I had the test following my diagnosis of Stage II invasive breast cancer. But there are millions who don’t and who won’t, unless the Supreme Court will overturn Myriad Genetics patent when the case comes before them this summer. Until such times, I have dear friends who would not be able to access this testing, and therefore have less options for treatment and less information about their risk – not to mention the risk of their daughters – for ovarian and breast cancer. But Myriad Genetic Laboratories, Inc. is the only game in town. With no outside competition to help bring down the price, the test remains unaffordable and inaccessible for the uninsured and the poor. Globally, almost a half million women will die this year, most of them living in low-income countries, according to the World Health Organization. What of them? What options do they have if they are high-risk like Angelina Jolie? They may never know.

I first heard about Myriad Genetics one afternoon last year. I was reading an email from Breast Cancer Action, and, at the same time, and somewhat ironically, half-watching the Anderson Cooper show. In full-blown talk-show host mode, he was fawning over savvy Spanx inventor, Sara Blakely. Fresh off the cover of Forbes magazine, as the youngest ever self-made female billionaire, the affable Ms. Blakely was giving me hope that somewhere inside me, lying dormant, is a billion dollar idea, a simple but powerful invention that will change the world. At the risk of being a snob, I’m hoping when my brilliant idea finally comes to fruition, it will have a touch of gravitas. Something a little less Spanx, a little more Penicillin.

To give Ms. Blakely her due, she did what most of us do not. She didn’t just experience a light bulb moment and then abandon it. She threw both arms around that idea, held it tight, and arduously navigated her way through a complex process of patents and trademarks, prototypes and packaging, manufacturing and marketing, schmoozing and selling, until, naturally, Oprah called. Within the next six years, Spanx became something of an institution in the “shapewear” revolution, its inventor on the cover of Forbes and in the enviable position of being able to empower other women through the Foundation that bears her name.

It was the patenting of Sara Blakely’s invention and those of others that piqued my interest that afternoon. A time-consuming process, the application for a patent involves tedious research and perhaps the assistance of a draftsman and a lawyer or two. When Spanx was but a twinkle in her eye, the inventor did her homework by first researching trademarks and patents. I imagine she started where I did, at the website of the United States Patent and Trademark Office (USPTO).  Before filing a patent application, it would be important to know exactly what a patent is, who can have one, what can be patented and for how long, and the law governing it. According to the USPTO, a patent for an invention is “the grant of a property right to the inventor, issued by the United States Patent and Trademark Office.” Already, this is a very boring website. The text is too small and it feels like high school homework.  I am sorely tempted to leave it for something less arduous, like a Facebook status update, but then I find the part about patent law that I have to re-read because of the Breast Cancer Action email:

Any person who “invents or discovers any new and useful process, machine, manufacture, or composition of matter, or any new and useful improvement thereof, may obtain a patent,” subject to the conditions and requirements of the law. The word “process” is defined by law as a process, act or method, and primarily includes industrial or technical processes. The term “machine” used in the statute needs no explanation. The term “manufacture” refers to articles that are made, and includes all manufactured articles. The term “composition of matter” relates to chemical compositions and may include mixtures of ingredients as well as new chemical compounds. These classes of subject matter taken together include practically everything that is made by man and the processes for making the products.

Read it again, because it is really important.

Within the context of Spanx or Penicillin or the telephone, patents make sense. I struggle more with what I thought was a relatively new idea. In fact, the USTPO has been patenting genes since 1980, when the case of Diamond v Chakrabarty determined that a scientist could patent an invention even if the invention was a living thing. So even though a whole biological organism is not patentable, artificially altered organisms can be patented. Thus, the era of gene patenting began.

According to The Hastings Center, a nonpartisan research institution dedicated to bioethics and the public interest since 1969, there has been a flurry of activity in gene patenting – “about 3,000 to 5,000 patents on human genes have been granted in the United States and 47,000 on inventions involving genetic material.” How does that happen? And what on earth does any of it have to do with my genes?

Other than hoping I will take after my lovely mother who, at 75 could pass for my sister, I have never really considered genetics beyond what’s required for a high school biology assignment involving Punnett Squares and the probability of inheriting blue eyes. It was only after being diagnosed with breast cancer that genetics came up. My physician had explained that because of the location and size of the tumor in my right breast, close to the nipple, that the “simple” mastectomy was the best option. But, wait! There’s more! As there always is, on the cancer trail. With menopause most likely around the corner and my age at diagnosis, my physician recommended the BRACAnalysis test. If the test indicated a mutation in the BRCA1 or BRCA 2 genes, those genes most often associated with breast and ovarian cancer, then she would recommend a double mastectomy and an oopherectomy to boot. Gobsmacked as I was by the prospect of such butchery, it was actually less frightening than the cancer, the cause of which remains unknown.

At this point, I had to remind myself that if someone had  informed me of the density of my breast tissue and recommended an ultrasound, the cancer growing inside that dense tissue all those years may not have evaded three mammograms, thus saving me a lot of time and trouble. So I provided a sample via buccal wash i.e. I spat into a test-tube, and I waited. Again. For two excruciating weeks. When the news came that the test was negative, I was delighted. So delighted, I didn’t ask more questions about the genetic material in my saliva which had been sent to Myriad Genetics and analyzed by the scientists to determine my risk for hereditary breast and ovarian cancer.

What Angelina Jolie didn’t tell you is that she and I have something in common. Each of us is intimately involved with Myriad Genetics. In fact, we belong to Myriad. When the staff of the USPTO approved Myriad’s application for a patent on on the BRCA1 and BRCA2 genes, they essentially allowed Myriad Genetics to claim ownership of, and exclusive rights to, my genetic material – and Angelina Jolie’s.

My genetic material. I suppose for years, I have been of the same mind as that espoused back in 1997 in A Briefing on the Proposed EU Directive on the Legal Protection of Biotechnological Inventions:

Most people assume that their bodies are their own – and no-one else’s. They assume that their blood is theirs, unless they care to donate some of it. They assume that, while they are alive, their kidneys, their eyes, their spleens, their hearts are theirs – and will go with them to their graves unless they chose to gift them to others. They might also assume that their genes – the inherited biological material inside each of their cells – are theirs, rather than anybody else’s.

Sadly, my assumptions about my genes have been all wrong. My genes belong to Myriad Genetics. Sobering to realize that whatever I spat into that testtube was seized by a corporation crafty enough to have filed a patent on it. A mere mortal such as myself, however, cannot file a patent application on her own genes, being unable to identify a sequence in the DNA code which would, as I explained earlier, constitute a “new and useful process.” So I can only continue to hold out hope for a patent on my as-yet-to-be-formed billion dollar idea, some “manufactured article” … like Spanx.

genesIsn’t it grossly unfair that one company can monopolize the genetic diagnostic testing options available for women? Isn’t it wrong for one corporation to reign supreme over the ability for women to ask for a second opinion when genetic testing results are inconclusive or before they have to make critical life-changing treatment decisions like having both breasts and ovaries removed? Isn’t it wrong that one corporation exerts total control over important scientific research that potentially could save lives. Not quite on the level of Spanx and not yet on the cover of Forbes, but Myriad Genetics, is doing rather well. Just give it time. On its corporate website, it boasts of being

 … a leading molecular diagnostic company dedicated to making a difference in patient’s lives through the discovery and commercialization of transformative tests to assess a person’s risk of developing disease, guide treatment decisions and assess risk of disease progression and recurrence. With fiscal year 2011 revenue of over $400 million and more than 1,100 employees, Myriad is working on strategic directives, including new test introductions, companion diagnostics, and international expansion to take advantage of significant growth opportunities that further the Company’s mission.”

I’ll say Myriad is making a difference in my life and the lives of lots of other people, because Myriad owns our lives. Because Myriad owns the patent on “breast cancer genes,”  only Myriad can test for them. Again, the language of cancer is so important. Words matter. Myths matter. Even though BRCA1 and 2 are referred to as the “breast cancer genes,” each and every one of us has these in our bodies even if they don’t have mutations.

So it is hardly surprising that on the heels of Jolie’s news, I turned to my “cancer portfolio” to peruse all those test results and pathology reports. In my case, the “comprehensive” in Comprehensive BRACAnalysis, had initially conveyed such relief, it didn’t occur to me to read beyond “No Mutation Detected.” Had I done so, I would have discovered that there was another test that, for an additional cost, would have detected genetic defects missed by the original BRACAnalysis. This newer test, The BRACAnalysis Rearrangement Test  (BART), is also owned by Myriad Genetics. Well, of course it is.  CNN reported that back in 2006, Myriad, began selling this new test BART, which as I scan my own test result, “would identify large genomic arrangements undetected” by the $3,000 BRACAnalysis. Apparently, doctors had assumed  the original analysis included BART. In reality, however, Myriad offered it separately and charged $700 as one would expect of a monopoly.

“No Mutation Detected” is a bold declaration and cause for celebration, but I would have gladly accepted, in bold print and capital letters, at the top of the report, “Make Sure You Ask For The Supplemental BART Too!”

As an increasingly empowered patient, I know I should have read that report more closely. After all, it was about me. But when the result came in the mail, I went ahead and filed it with all the other cancer papers without reading it. My doctor’s office had already called to tell me it was negative and didn’t mention the BART, so I filed it away.

Until this week, when  I read Angelina Jolie’s story and thought again of the unflagging work of Breast Cancer Action, from imploring people who have been tested to share their stories about genetic testing with the staff of the US Trademark and Patent Office, to pursuing a lawsuit against Myriad and its patents on our lives. The case was brought before the U.S. Supreme Court just last month. A ruling is expected this summer.

laraIn the meantime, what can we do? What can Angelina Jolie do?  The actress has a real-life opportunity to be as powerful as the super-women she has played in the movies. I hope she will stand up and support BCAction in demanding that human gene patents are outlawed and  that  every single woman – like Angelina Jolie, like me – can make her own medical choice, after carefully considering if the benefits outweigh the risks.

If the answer to what causes cancer lies in my genes and your genes, then no corporation should hold exclusive rights to them or to all the research performed on them. Anyway, aren’t we all supposed to be in this race for a cure together?  Oh that’s right, at least Komen and Myriad Genetics are in it together with the Susan G. Komen Foundation receiving funding from Myriad Genetics.

Of course it does.

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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.

 

 

the saturday shot … i’m expecting you

28 Saturday Jul 2012

Posted by in Breast Cancer Treatment, Diagnosis, fear of recurrence, Mammograms, Memoir

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One of the first gifts my husband ever gave me was a silver pocket compass.  While not at all useful, it is of great sentimental value.  Having noted very early in our relationship my stellar capacity for getting lost and notwithstanding the fact that I was then a novice driving on the American (and wrong) side of the road my man intervened as he knew best. I hadn’t the heart to tell him that I was never one for “orienteering” or map-reading; I was more of a free-spirited “let’s-just-see-where-the-road-takes-us” kind of gal with nary a Duke of Edinburgh Expedition Award in my school career.

With factory-installed GPS navigation systems now de rigeur, and the fact that there is most certainly “an App for that,” it has to be said that I am feeling infinitely more confident about my ability to drive around Phoenix and other cities. If I have been somewhere at least eleven times, I can get there without assistance. Until such times, however, I count on Google maps, Siri, my daughter reading directions, my long-suffering friends “bringing me in” on their phones from my destination.

Known Places

I know where I am when I’m driving around central Phoenix. I’m practically a native and could probably be a taxi driver. I know it better than I know Belfast, and various places within it have now reached  “stomping ground” status – the original Dutch Bros Coffee on the corners of Central and Camelback Avenues, the nearby Poor Little Rich Girl, a favorite consignment store, the iconic Rhythm Room, THE home of the blues on Indian School Road and Ticoz, where the owner can always count on me to place the same half-order of the grilled peach salad with salmon. I’m a frequent flyer to Marshalls and TJ Maxx, and no Saturday would be complete without a trip to Target to return something. Sunday afternoons used to be reserved for Loehmanns on Lincoln Drive. Its only store in Arizona closed recently, but thankfully it will live forever in my memory, my closet, and in Erma Bombeck’s All I Know About Animal Behavior I learned in Loehmanns Dressing Room. In such places, are those “known strangers” who won’t let me get lost.

Scottsdale Healthcare Osborn Medical Center, has officially become one of my haunts as well. The strangers I know there are cheerful and warm, and I reciprocate, because I am polite, obedient, and scared. When I go there, it is for procedures involving large needles, big clunking machines, and stretches of time when I am completely by myself. The MRI technician performing the scan outside the room doesn’t count as real company, and I wonder if she thought I had too breezily blown off last Thursday’s brain scan until after our vacation, preferring to postpone it in order to focus on more important activities like tide-pooling and seal-spotting and the lighting of a little fire on the edge of Morro Bay at dusk.

For context, a headache has been my constant companion since right before or right after my cancer diagnosis. Immune to Advil and Tylenol and more serious pain-killers, it will not go away. I also have twinges of sharp pain in my left hip which is either yet another Tamoxifen side effect that can be relieved by yet another medication, the side effects of which might cause twinges of pain somewhere else, or a more palatable side effect of aging. There is also bone-crushing fatigue, memory loss, hot flashes, and – staggeringly – more fatigue – all attributable to what they casually call ‘chemical’ menopause brought on by cancer treatment.

At the same time, there is a wild flash of creativity or energy to convince me I am somewhat more than someone who merely reminds me of a woman I used to know.  

On going to  Medical Appointments Alone

That  woman had been to the Scottsdale hospital at least eight times before a cancer diagnosis, but was wholly unprepared for the emotional response that was simmering below the surface. Transformed once again, Stepford-like, by the same hospital-issued blue and white gown from the same wicker basket in the same  room where I had waited last November. With my clothes crumpled in a plastic “Patient Belongings Bag” and stowed away in a locker, I began to cry. Inconsolable, great, fat tears fell as I remembered I was last in this place following a difficult core needle biopsy and endless mammograms to get “just the right picture” for the perky technician.  Last Thursday, not a year later, I had new things to think about like the headaches, when they started, and how long they lasted. It took longer to fill out the form because there were more boxes to check in this new and revised edition of my medical history. That, and I had forgotten my glasses.

I also had to remind myself to remind Stephanie, as she prepared the IV, to use my left arm not my right, because of my new fear of lymphedema which I have since learned can develop following removal of lymph nodes. Why aren’t there large-print notices in hospitals and doctor’s offices reminding health care folks to remind patients how not to increase the risk of lymphedema? As Stephanie found an obliging vein in my “good” arm, she told me I was brave, “a warrior” no less, and that it was muscle memory that was making me cry. “Entirely understandable,” she said. Her earnest and interested eyes soon had me singing like a bird about all that ails me. But once I was on the MRI table and slid into that machine, Stephanie had fled. I could see her reflection with that of the top of the technician’s head in the tiny mirror attached to the machine somewhere in the vicinity of my head. And the scan of my brain was underway.

The MRI scan is a surreal and solitary confinement, ungainly, and it takes too long. The machine itself stops and starts with strange sounds that belong in a Pink Floyd song. It is a time to be silent and still, to Confront My Mortality. For an entire thirty minutes. Entirely too long to think about scary things. 

Confined thus, and claustrophobic, I forced myself to find a mental picture to help the time go by. I imagined the sun falling asleep on Morro Bay, and a photograph in my scrapbook:I tried to bask within that orange glow until I heard “Good job. You’re all done,” from the same voice that had reassured me it was attached to a human being who was right outside and I needed only to squeeze a ball to let him know if I couldn’t take it anymore or if I needed to sneeze.

It was over. I was back with ‘known strangers” in the hospital waiting room, those with whom I can readily share confidences, indignities, intimacies, and other ties that bind us in our “stages” of disease – those who are weary, frustrated, and frightened by new uncertainties.

I learned something on Thursday. I should not go to these appointments alone, because I am shocked by what happens to me. Every time. It isn’t that I’m alone in the world beyond the hospital, in my ‘real’ life. My husband loves me, he is in my corner and my soft place to fall. I have dear friends who care about me. Why must I continue not to invite one of them to come with me to one of these appointments. I think I know why. You do too.

Can you be alone with yourself?

The truth is that I have not resumed normal activity at all, but I have been a fairly decent actress. Already, I have grown weary. I have forgotten my lines, and I am in need an understudy. Anybody interested? My life is teeming with people who do not know what to say to me about The Cancer. It is the subject they do not bring up. The elephant in the room. Maybe I say too much about it myself or not enough, or maybe it is too frightening and unsettling, too inconvenient to see a change in the routines and rituals that used to define me. All this I pondered, still and silent, within the confines of an MRI machine, imagining a very beautiful sunset and remembering from Invitation by Oriah Mountain Dreamer:

It doesn’t interest me what you do for a living.
I want to know what you ache for, and if you dare to dream of meeting your heart’s longing.

It doesn’t interest me how old you are.
I want to know if you will risk looking like a fool for love, for your dream, for the adventure of being alive.

It doesn’t interest me what planets are squaring your moon.
I want to know if you have touched the center of your own sorrow, if you have been opened by life’s betrayals or have become shriveled and closed from fear of further pain!
I want to know if you can sit with pain, mine or your own, without moving to hide it or fade it, or fix it.

I want to know if you can be with joy, mine or your own, if you can dance with wildness and let the ecstasy fill you to the tips of your fingers and toes without cautioning us to be careful, to be realistic, to remember the limitations of being human.

It doesn’t interest me if the story you are telling me is true.
I want to know if you can disappoint another to be true to yourself; if you can bear the accusation of betrayal and not betray your own soul; if you can be faithless and therefore trustworthy.

I want to know if you can see beauty even when it’s not pretty, every day, and if you can source your own life from its presence.

I want to know if you can live with failure, yours and mine, and still stand on the edge of the lake and shout to the silver of the full moon, “Yes!”

It doesn’t interest me to know where you live or how much money you have.
I want to know if you can get up, after the night of grief and despair, weary and bruised to the bone, and do what needs to be done to feed the children.

It doesn’t interest me who you know or how you came to be here.
I want to know if you will stand in the center of the fire with me and not shrink back.

It doesn’t interest me where or what or with whom you have studied.
I want to know what sustains you, from the inside, when all else falls away

I want to know if you can be alone with yourself and if you truly like the company you keep in the empty moments.