A Cautionary Awareness Tale

On October 31, as I distracted myself with Halloween’s glory, I asked myself: “what do we become aware of this month?” Lots of Facebook posts ask that question, I asked it on Twitter I think. So much sound and fury in October, but does anyone learn anything? I think not.

I forced myself to remember the days before diagnosis. I know I never thought all the pink rah rah crap was great–that’s just a core trait of my personality. But what did I know about breast cancer, and the awareness push, before diagnoses?

This is a tough question to answer. I’m not sure I fully know the answer. I know I absorbed the “early diagnosis/screening” messages. I knew enough to ask for a mammogram earlier that the suggested age (40 at that time), but I still regarded breast cancer, any cancer, as an older person’s disease despite knowing actual patients my age. I asked for a mammogram because I knew I had a higher risk with family history-my aunt had just been diagnosed for heaven’s sake. I knew about ribbons, especially red ribbons (AIDS) and pink ribbons. Did I know October was “awareness” month? Maybe–but it did not “click” with me until the late 00’s.

The incident that made it click with me–well, I’d buried it. I was working in for a non-profit arts organization. Doing film exhibition with local community organizations. In the summer of 2008 or 2009 I began working with a women’s business group. My point collaboration person was suggesting topics for me to find films for our October event. I remember her telling me October was Breast Cancer Awareness Month.

I remember being surprised by that–what a dumb month for such a thing! Let me explain. As a lifelong resident of a beach town/resort area, with my first post-college job being in retail, I had a list of hard and fast rules and truths. Painting October Pink was stupid in my mind. Lots of local “runs” took place in April/May/June anyway–wasn’t spring better for Pink? I’ve lived my life by the ebb and flow of tourist traffic. Panel season, or off-season, events were in a strict path. There was the Greyhound rescue dog weekend, Jazzfest weekend, Seawitch, etc. in October. Where I worked, the annual film festival was the second weekend of November. I had no time for anything else–October was full of deadlines in preparation for this main event–a time of no sleep, no fun, no nothing. I measured these things in amounts of car traffic (for my work travel) and the likelihood of whether I could schedule an event and get any butts in seats during those event weekends (likely not). BCAM had maybe a marathon in one beach town–but there was always a marathon each weekend (bikes the worst, as they interrupted traffic the most, adding to my work travel time). I had no time for breast cancer, awareness, or a month of it . But sure, if I could find cheap film to exhibit about it, I’d see what I could do (this was before the release of Pink Ribbons, Inc.).

I don’t remember what films I exhibited–none about cancer I’m relatively certain. I moved on, forgot about this, got cancer, and now I remember it.

But here is the other thing I’d submerged, and am just now dredging up–a sort of painful memory.

I skipped the main event in 2010, having just been diagnosed, and preparing for the Red Devil. In 2011, I returned, managing over 1,000 volunteers for the annual festival, among other things. I had completed chemo in January of that year, radiation in the summer. I was still doing Herceptin every 3 weeks and my hair was curly and short–just returning. I was exhausted and felt horrible. I ran into the women I’d coordinated with for that event of a few years prior. She laughed and asked why I’d cut my hair so short (I’ve always worn it long). “I had cancer,” I replied curtly. She laughed for half a second then sobered up when she saw I was NOT laughing. “Breast cancer?” she asked. “Yeah,” I grunted.

So here was this person, so into “The Cause” but what did she really know about breast cancer? Breast cancer was a thing to worry about–but a thing that happened to other people–not ones we knew, not ourselves. Breast cancer was a thing to promote because an audience “cared” about it. But not “real”.

I realize now how much this informed my view of BCAM–this ignorance. It’s something to care about, to SHOW care about, but it always happens to someone else.

Until.

This is likely part of my disconnect with such hollow shows of “solidarity” of “Support”. Those things are meaningless to me.  The Pink events–they have little to do with What Really Happens.

I hold no ill will toward this woman–how could I? I was just as ignorant, just as “that won’t happen to me.” I don’t even remember her name, or the organization, and don’t feel motivated to research it. It doesn’t matter. It was just a memory that popped up Monday, unwanted, as I tried to get ready for tricks or treats.

My point is: October and BCAM, those are just “things to do”, the way we do other “holiday” things: buy candy for trick or treaters, buy a turkey and fret about ignorant relatives, succumb to shopping holiday madness, and make the obligatory weight loss New Year’s resolution.

And that is what I hate about October as Breast Cancer Awareness Month: it has become a rote obligatory motion we go through–not real.  Except to those of us who had the dumb fortune to get breast cancer.

And this is what needs to change.

 

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What Gets Lost in Translation

This is another “cancer language sucks” post. And yes, it is about the celebrity stories and wacky headlines bombarding the entertainment news sections: Rita Wilson and her 100% healthy and cancer free—which it seems she actually did say; Former President Carter’s cancer free status, though I think that was said about him, not sure what he actually said; and the completely baffling story of Lorna Luft and her seven ribs. I admit, I gave up reading pieces about her, could not figure out the details and her clichéd quotes, her need to adhere to the culturally approved cancer script, just sickened me and I gave up.

I’ve written about my rejection of the terms like survivor and warrior (here and here, that’s two in my mind, too lazy to look for more), and no doubt will again. I’ve especially written about my confusion about remission. I cannot recall exactly what phrases any of my oncologists have ever said to me. While never grim, they were always cautious. I do not remember anyone using NED with me; I picked that up via social media. I’m sure no one ever said “cured” or “cancer free”. The vibe was always: “we don’t see any cancer, and your chances are good, but let’s keep an eye on it all”. I was told from the very first meeting with the oncologist the odds of my kind of cancer (HER2+) and stage coming back. I was always aware it could go other places, and was told how lucky I was the cancer had not reached the chest wall—tho’ it almost had reached it.

But the general population just cannot understand all of that. I’m learning some cancer patients don’t understand it fully either, and nor do they try. I am still in slight shock, all these years later, when I think of that little “live healthy post cancer” workshop I attended—in a room with about 10 other women, none of them understanding what I meant when I announced my stage and type at the meet and greet part. “HER2? What does that mean?” Guess they were all estrogen receptor positive? Good thing a triple negative patient wasn’t there that day.

People like a beginning and an end—a cure, and end to treatment, and the absence of ever needing to think about cancer again. They like slogans and soundbites. And everyone especially likes a happy ending. A story about a former president’s cancer, the idea it might come back, but given his age, something else will cause his death earlier—that is too confusing! Better to simply think he “won”. An aging actress on the road with her play needs to reassure potential ticket buyers all is well; she’s going to be in the show coming to your town next year. Sell the joy! And so what if, 15 years from now, a small news item in the back pages appears announcing her recurrence and quick death—“I thought she beat that”, people will think before quickly forgetting the story and moving on to the latest young pop stars’ exploits.

But here’s the thing.

When celebrities and headlines go on and on about “cured!” and “beat cancer!” it confuses the people we—regular average cancer patients—have to interact with every day. What do I mean I have an oncologist appointment? Didn’t I finish up with cancer years ago? Old old old Jimmy Carter beat cancer, why can’t I? Look how peppy Joan Lunden is, why isn’t my breast cancer over and done with? Do I really need to point out that celebrities stick to a cancer culture approved script? Am I being too hard on actors and TV talks show hosts for needing a script rather than thinking and speaking for themselves? Whoopsie, did I just write that out loud?

Words matter, as so many inspirational posters like to remind us. A little celebratory slip of the tongue: “I’m cancer free” confuses the cultural conversation around cancer. And that is why so many of us in CancerLand got so bent out of shape about these stories. People without up close and personal cancer experience will happily go back to their fairy tale (My Reality and Your Fairy Tale), and assume the celebrity is “all done”, and cancer is curable.

It seems once I got my cancer diagnosis, I learned a second language. NED, estrogen receptors, chemobrain, pinkwashing, argh, do I need to go on? I do find myself translating at times. And it seems that the area of language in which we CancerLand residents must be MOST careful is when discussing the after-treatment (if there is even a post-treatment status, because generally for Stage 4, there is not) time. So when Rita Wilson says something like cancer-free, we find ourselves having to explain so much. And it is tiring.

This brings me to another little tidbit of translation, or more like re-defining words.

Reading FB comments is always a hazard, I know, but of course I did and the typical stuff happened in threads about Wilson’s news. A few advocates attempted to explain and correct the “cancer-free” issue. Naturally, those who believe that any kind of truth-telling automatically equals negativity, began to scream about it, calling the comments “toxic”. I’m not as active or strident as breast cancer advocates; unwilling to “get into it” very much. But I could not help but chime in with my annoyance at this. I mean, come on, why call a different opinion toxic? Isn’t that a bit overdramatic? In my mind’s eye, I saw a person clamping hands over ears to shut out the opinions they disagree with. And yes, I over-dramatized myself, picturing Gollum saying “not listening, not listening!” LOTR nerds will know what scene I’m referencing.

It irritates me that thoughtful dialogue cannot occur without the situation devolving to this. I found myself wanting to engage in a little careless re-defining or mis-translation myself. I get sick of reading about false positives (because I was a false negative). I know what it really means here in CancerLand, town of breast, but I have this fantasy. I want to call all these people who redefine words like toxic, who think cancer is curable by eating right and keeping a kick cancer’s ass attitude, I want to call these people “false positive”. Because to me that is what is going on: thinking something is one thing, and maybe it isn’t. So part of me is like, OK fine, embrace the positive-negative dichotomy and let’s hope you don’t end up bitterly disappointed in your mistaken idea cancer is really, really gone.

But of course, it is not in me to do that. I don’t like the misinterpretation of words and concepts. And I am tired of the strict black and white boxes being forced around the cancer conversation. Spouting facts does not equal being negative—looking at stats and numbers can actually be quite apart from such silly notions as “don’t be a negative nelly, be positive”. That kind of black/white, half-full/half-empty thinking must come to an end. Embrace the complexity of life, people!!!!

But then, who am I kidding? Everyone wants pat slogans that translate to their liking: “cancer can be cured!” Conversation over, and what have we lost in translation?

365

Sometimes I think the universe gives me the middle finger at random times.

The previous post, Some Word Problems, was about a few words and phrases wearing me out recently. It took a long time to write—I kept going down many paths, packing in too many topics that annoy me. I struggled to keep on point and wound up making a list of other possible blog posts. Finally I got it down to a somewhat manageable and readable ramble, posted it, and immediately embarked on the rest of my busy day.

As I’ve mentioned before, I live in a rural, yet beach resort area, with a growing retiree population. This means lots of rural roads, traffic congestion—not just in the summer—that causes me to get stuck behind some cars for miles on end.

So what do I get stuck behind, just after posting a rant against the phrases about awareness and support? A large SUV, with a pink ribbon sticker over the left tail light bearing the phrase “breast cancer awareness”, and over the right tail light, a sticker bearing the official Komen version of the ribbon with the word “supporter” under it.

No, no, no…I’m not trying to criticize or belittle the car’s owner. Clearly this person’s heart is in the right place, and has made his or her choices about Pink. S/he has no issue with it—I do. I think the ubiquity of the ribbon has damaged, and will do more damage, to the conversation and the “cause” and to women in general. The damage of Pink for this specific Curmudgeon—well, that is what most of the posts on this blog are about.

But I don’t want to get into that.

It was just an odd moment that made me snort with grim laughter. So often, many breast cancer bloggers point out in the throes of Pinktober–hey breast cancer is every day for us, not just one month. Seeing those stickers I realized that it isn’t just the disease itself that is every damn day. With these stickers and other items folks buy and adorn themselves, their cars, their….argh…everything, with—there is no escape from Pink ribbons, 365 days a year. For me, the desire, the need, to spread the truths about breast cancer that Pink omits, is a 365 days a year task.

Or maybe the universe was just giving me the finger.