Breast Cancer Riot

random find

“Takes a teen age riot to get me out of bed right now”

-From “Teenage Riot” by Sonic Youth, song released in 1988

A/N I started this post a couple of weeks ago and life kept interfering. But I kept randomly adding stuff to and it became a long beast. What got me to finish was a bit of strange synchronicity. I based the title on that song that imagines king slacker J Masics of Dinosaur Jr. as an alterna-president. Last Saturday night I was delighted when Masics and Kim Gordon of Sonic Youth made an unannounced appearance on SNL, in the very tasteful goodbye performance of a departing cast member. It reminded me, hey I need to finish that thing I started.

Reflecting on a few posts regarding the fall-out from that infamous 64%, I started thinking about the challenges of getting the public (as in, those who are lucky enough to not have cancer) to understand some truths about breast cancer, which have been made pretty and untrue by the pink machine, and the media’s inability to get facts right. Dissatisfaction with pink is starting to spread, but the truth is not out there, no matter what Agent Mulder thinks. It is often acknowledged that most people do not want to hear the unpleasant and/or abstract truths. In some comments on other blogs I seem to remember (not sure where, sorry!), someone suggested anarchy (cue the Sex Pistols song getting stuck in my head) as a method for making people pay attention, or hell, even just stopping traffic at an intersection. But anarchy, rioting, and heaven forbid, stopping traffic, would just be viewed as an unpleasant interruption in the public’s daily lives, thus making the masses even more unwilling to hear an unpleasant truth.

Still, I think it is worth it to at least stage a mini or pseudo riot. Maybe a mini riot is what it takes to make the facts more clear. There is so much misinformation out there, it is overwhelming. But driving me craziest lately is the misinformation/misdirection that early detection is somehow equal to prevention. (Yes I’ve already ranted about it before, not just a breast cancer issue). Mammography, a detection tool, is sold as the best defense in that “war” on breast cancer. And people believe it. To paraphrase the late Barbara Brenner in “Pink Ribbons, Inc.”: selling mammography was done too well, so that some women got cancer and confusedly said “but I got my mammogram,” upon hearing their diagnosis, like that mammogram should have protected them against cancer.

There is much animosity toward Komen, and I certainly agree with it, but they aren’t the only culprits. Take the Keep A Breast Foundation….please! They are the ones behind the “I ♥ boobies” bracelets, and according to their website, their whole mission is about education and awareness. This is the great fallacy of most of these organizations. Educate and make me aware of what exactly? That breast cancer exists, that many people will get it? What all these cutesy slogans and stupid products sell is that early detection is the only way to protect oneself. But they fail, egregiously, in telling the public that if that sacred and revered tool—mammogram—actually detects cancer, it is quite likely that breasts will be removed either completely or partially. So much for keeping any breasts. If you’re going to call your organization keep a breast, the singular goal should be research into how to prevent the ways in which tumors get in there and cause, duh, the loss of breasts.

And then there is the Save the Ta-tas stickers and foundation. Yeah, yeah I know, “save the ta-tas” is just a slogan to bring awareness to breast cancer, proceeds go to research that saved your life so stop your whining, you ungrateful breast cancer patient, blah blah blah. But that is NOT what the slogan says. The sticker says only that ta-tas are to be saved, not lives. Always read exactly what something says. When it came to naming their organization, they chose poorly.

A quick (not in depth) look at the Save the Ta-tas Foundation website shows a few admirable points—they donate from gross not profit, and understand they are a marketing or brand organization, not scientists. So on that score, the money goes through a series of hoops and winds up going to the Concern Foundation which disseminates the money to various researchers. Or at least, I went through a series of mouse clicks to try to follow the money (these things are always better at asking the reader for money than telling them what happens to it once pried out of donor hands). The best I can tell (this is lots of clicking; the url says savethetatas, but the actual page isn’t specific about breasts, or perhaps that was a few more clicks away), the grant recipients work on all kinds of cancer, and not strictly in preventative measures, but all kinds of treatments. That is a good thing—all stages and preventative measures should be researched on all kinds of cancers (silly me, I want all cancer cured and prevented…I want the world and I want it now). But how does it save any ta-tas, specifically? I keep reading about the increase in preventative mastectomy, so looks like even less tat-tas are getting saved than ever, even with the alleged progress in science. Save the Ta-tas, you FAILED. It isn’t the truth that bothers me, it was the being lied to in the first place.

I recently complained about a couple of editorials implying that the National Breast Cancer Coalition’s 2020 Deadline should focus on non-breast cancer disease, and whadya know, if I’m reading the Save the Ta-tas Foundation site right, here is one way breast cancer and the pink ribbon is helping other cancer issues: money from ta-ta t-shirt sales goes to this Concern Foundation, and I cannot see that the money is specifically earmarked for breast research; so I assume it is funneled into all the cancer projects. So pink is helping other cancers by the sexualization of breast cancer. While organizations devoted to raising awareness about various other cancers may be trying to imitate the success of pink, they lack the thing that makes selling breast cancer awareness so successful: paraphrasing Brenner in “Pink Ribbons, Inc.” again, with breast cancer, society gets to talk about boobies. I hope folks who defend Brinker, saying CEOs work so hard, remember that she has what all corporations need in the first place, desirable product.

Before anyone begins to howl at me for picking on Save the Ta-tas and Keep a Breast, and for not doing my homework: yeah, kind of the point. Those “save the ta-tas” stickers and boobies bracelets are everywhere. Don’t get so well-known and expect all love, no haters. I’ve always hated them and it was torture to visit their sites; I’d studiously avoided them prior to this. I picked on those two because of the offensiveness of the products, and the visibility. But they are hardly the only ones I could pick on. There are tons of examples of pink deception. My favorite local example? A car wash that advertised one October that in honor of breast cancer awareness month, all ladies got $2 off the price of a car wash; no mention that the $2 would go to any particular organization to help anyone with actual breast cancer; also kind of a nice “fuck you” to men with breast cancer, huh? I don’t have to point out the numerous problems with this do I? And as for not doing lots of hard research on the organizations I picked on, again, that’s the point. I only did what any cancer industry consumer can do, and probably more than most consumers bother to do. No, most folks just buy the pink plastic crap, utilize the service that purports to support breast cancer charity, and blindly think they are helping.

So, getting back to the proposal of this post–why isn’t there more active rioting against the pink. Or at the very least, a cohesive movement that gives a disgruntled soul like myself an alternate to pink. I have a secret fantasy every time I see one of those “save the ta-tas” stickers on a car. I wanna grab a sticky note and write “how about saving my life? –signed, a breast cancer patient who lost part of her breast”, and I could then stick it to the car. I think this comes from spending too much time on funny websites featuring notes people leave on cars admonishing the cars’ owners for offenses like bad parking, blocking other cars in, etc. I don’t think it is illegal exactly, but one could probably get into some sort of trouble for touching other people’s cars, if caught. Or maybe in light of the 64% increase in salary, I can go around to those Walk/Race for the Cure posters, and write on my sticky notes, “salary” and stick it over the word “cure”, that would be ok, right?

asspark

I wanna rebel against pink culture, in a way other than ranting in (ahem) my overly wordy posts that are too exasperating to read. I want something as attention-getting as those ta-ta stickers. I want to get the truth out there. And it needs to be short phrases (not a talent I possess), able to change minds in a split second, because no one bothers to read/listen long enough to get the whole story, or if they do, they are unlikely to pay enough attention to get the facts.

In “The Birdcage”, Senator Kevin Keeley (Gene Hackman), said to his wife, “Louise, people in this country aren’t interested in details. They don’t even trust details. The only thing they trust is headlines.” That says it all, doesn’t it? Seventeen years later and the line is still very true. People misconstrue words or fail to listen completely all the time. Flashback to the 80s with me won’t you? Remember when Regan wanted to use “Born In the USA” on the campaign trail until he got clued in that with the song The Boss was not exactly giving a proper salute to the red, white, and blue?  R. E. M.’s first ever Top 40 hit had the lyric “This one goes out to the one I love,” and girls were so busy cooing over that line they failed to hear the next one in which Michael Stipe called his lover “a simple prop to occupy my time”. Yikes, Michael (don’t hate on me, I love that band, seeing them live was one of the best days of my life).

Is it any wonder one of the biggest songs of the 90s, “Baby Got Back”, was much more straightforward? “I like big butts and I cannot lie”. Thank you Sir Mix-A-Lot, for giving us the clearest, most honest song of all time! (For the record I’m not being my usual sarcastic self here—I actually think it is a clever song, despite the objectifying.)

So, short of getting Sir Mix-A-Lot’s help in designing a slogan, song, or campaign, what can be done?

Pretty sure my sticky note idea is not the solution. As stated earlier in this over-long post, I think the time is ripe to motivate the growing numbers of those disenchanted by pink.

“I wanna keep my breasts, Mammogram is a lie/You other sisters can’t deny…”

The Ramones

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Joey Ramone, punk rock icon – May 19, 1951 – April 15, 2001- would have been 62 today, were it not for Lymphoma 

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The Only Time I Accept Battle Language In Cancer

The War on Cancer
source tastefully offensive

And another thanks to GBPR

Living With Cancer: Living Without Hair

Again, published in NY Times same time as “Feel Good War….”, little attention

Thanks to gbpr

Doctors Denounce Cancer Drug Prices of $100,000 a Year

This came out the same time as the “Feel Good….” article in NY Times, but I’ve seen less about it.

The D Word

A/N I started this post a week or two ago, but thought it would be taken as offensive. But I read a couple of things since, including Nancy’s Point and some horrible comments on Huffington Post that have renewed my desire to speak out to explain why, for me, sugarcoating death is so repugnant. Please click the link and read Nancy’s post, as well as the other post she links by Dr. Wosnick. Those are much nicer, more eloquent thoughts than the ones I express here. What I’ve written here still is a bit offensive, I even offend myself with it, but I think the topic is worth discussing.

The d-word….

No I do not mean dirty words like the f-word or the b-word (you know I have no problem just putting those actual words in here). But I meant death/dead/die.

It is strange that we avoid saying dead or died, yet, at least here in this rural area in which I live, some mourn quite publicly for a long time, perhaps morbidly so. On any given day I drive down a road and see at least one car with one of those “In loving memory” stickers, complete with date of birth and date of death. Or I see those tiny imitation grave sites that develop at the site of a car crash, off to the side of the road, complete with flowers, pictures and other kinds of things one puts at a tombstone (I assume other trinkets are also at a grave site) . So, those who engage in this very public mourning and memorializing are acknowledging quite obviously that the loved one is dead…yet in conversations many would say “so & so passed away”? In the example of the stickers on cars, it looks like an advertisement that the person is dead, but no one will actually say “so & so died”.

Why do we avoid saying “so & so died”? We say we lost someone, or they went to the light, into that good night or—hell I’m guilty of it too, I once said right here on this blog someone was “gone”—as if he just went to the store for milk or something. See how quickly my mind changed about the euphemisms? Lost is the one that really disturbs me, because in my literal mind, I may know that the person is dead, and I immediately assume the body was misplaced.

I find these euphemisms silly, and annoying. I especially hate them in Cancer World, where there are combined with the warrior/military language. Given the fact that both here on my blog and in real life I’ve been called “honest”, “candid”, and “direct”, is it really any surprise that I say any of this?

Or is it just in Cancer Land that the battle phrase is used? I’m not sure I’ve ever heard anyone say their friend/loved one “lost their battle” to heart disease, to stroke, to complications from surgery, to old age (although many of us wage war on that one, don’t we, with our make-up, night creams, etc.?). Although I will say I often hear someone had a heart attack. “Is he ok?”, “No, he passed.” See, no d-word again.

But of course, the battle language of cancer must be upheld, and it is all part of the blame-the-patient package. The patients must be responsible for all aspects of their special cancer…their poor diet/drinking/not having kids caused cancer in the first place, and in the event of death, it is NOT due to the treatments not being effective enough, oh no, it must be because the patient had a bad attitude and/or did not fight hard enough, therefore making him/her a loser.

The reason I insist we need to say the d-words is because it needs to be up-front-and-in-your- face that cancer kills, in an active, personal away. To say one of us lost the battle, like we are bad soldiers, is an insult. It has been said before and I simply parrot it here: I’m NOT a soldier although I suspect my body is a battlefield in which cancer and treatment fought one another bitterly. I was just kind of…there, getting the environmental impacts, like a scarred landscape for instance.

Like Nancy’s mother I do not want the obituary to say I passed away after the battle with cancer (although I do not presume to know why she said that or what she wanted instead). If I die of cancer before I reach the average age at which American women die, then it is cancer that killed me and I want that known.  I want it known that cancer killed me, that medicine and lack of research into prevention failed me, I did not fail in the war.

So for me, no passing away, no losing of any battles, no raging against the dying of the light. Death from cancer is not the time for poetic language, if I’m the one doing the dying.

Punk Rock (Breast) Cancer

Author’s Note- Dave Grohl’s SXSW Festival Keynote Address took place a couple of weeks ago, but due to ongoing internet connectivity issues, and just the insanity of life, I only managed to hear it recently, on NPR’s Fresh Air, then I managed to watch it on YouTube. I’ve listened to it–numerous times–since then. Even if you aren’t a fan, it is still worth a listen, but be warned, he’s pretty foul-mouthed (kind of like my blog, but much much worse). There are many references in this post to the keynote address, and I basically modeled the post on his speech. But, you don’t HAVE to listen to his address to get my point. -anotheronewiththecancer aka cancer curmudgeon

"I hope I still look like a rock star," Dave Grohl gives the keynote address during the South By Southwest Music Festival at the Austin Convention Center on March 14, 2013 in Austin, Texas.pic by Gary Miller/FilmMagic
“I hope I still look like a rock star,” Dave Grohl gives the keynote address during the South By Southwest Music Festival at the Austin Convention Center on March 14, 2013 in Austin, Texas.pic by Gary Miller/FilmMagic

Dear Dave,

Your keynote address at the recent SXSW Music Festival was one of the best speeches I’ve ever heard. One of your main themes, finding your own voice, resonated with me, as I am sure it is doing with many others.

So this is what MY voice wants to say.

One two three four. **

Several years ago I made a poor professional choice that resulted in my being surrounded by a few people I wish I never met. I lost not only my voice, but my way, maybe even myself. I spent too much time trying to please others, changing myself, trying to fit in, something I have never done very well. It impacted me in terrible ways…I failed at the effort, and I was miserable. I was preparing to remove myself from these harmful influences when I got a breast cancer diagnosis.

I stupidly bought into what I call the “cancer is magic” way of thinking. I thought I would get a spiritual, emotional, everything-but-the-kitchen-sink awakening, and things would change. I would be better at everything, life would be awesome, when it was all over. Oh how quickly I learned that cancer does not change anything…a person with cancer, everyone they know, and all life situations, are still the same. One of my many mottoes is, cancer only makes it more so. Everything I was before, I am now, but more so. My tolerance and patience-already not my strong points-all but disappeared. All the problems I had before my special news were simply magnified.

Two of the most hurtful criticisms I took repeatedly in the past 7 or so years were 1) I am immature and 2) I am a bad writer. And there were many, many more criticisms–to the point I am not sure I will ever regain the level of confidence I once had. I was in a bad place, and cancer became an extra horrible obstacle in an already intolerable situation.

Barely a month after completing active treatment, I said “fuck it”. It was messy, walking away so abruptly, but it was the best thing I’ve ever done. I don’t regret it, not even a single second. Cancer didn’t give me a lesson that life is short, I already knew that (because cancer is NOT magic, it is not an awakening for everyone). But I knew my life might actually be or get shorter. Translation: don’t waste a single fucking second of time being miserable.

So what did I do, finally free of the voices whispering in my ear that I was not good enough? I got, what you in your keynote called religion. I turned a side project into a business that allowed me to spend lots of time driving. While driving, I sang (screamed) along to old songs I loved when I was in my teens, twenties, even my thirties, up to present day. “Sonic reducer, ain’t no loser” (“Sonic Reducer”-Dead Boys), “Fuck you, I won’t do what you tell me” (“Killing In the Name Of”-Rage Against the Machine), “Twenty-twenty-twenty four hours to goooo I wanna be sedated” (“I Wanna Be Sedated”-The Ramones), “We jumped up on the table and shouted anarchy,” (Punk Rock Girl”-Dead Milkmen) and of course, “No, I cannot forgive you yet” (I think you know that one). I all but hung my head out the window like a dog while screaming that shit at the top of my lungs. Like your first punk rock club experience, it was heaven.

All these songs were the ones that got me through my misguided youth. I was right back to being immature, or so I thought. Turns out, all that chipping away at me those people did, telling me I was immature, made me even more immature…in the company of these jerks I felt like was 11 or 12 again, and my emotional reactions reflected that. Unfortunately, this was my state of mind during diagnosis and treatment. I had to grow up all over again, to re-grow my confidence, and the best way to do that was to embrace that immaturity…to be a brat and regain my punky snot-nosed self that entered adulthood, and I did it through music. Eventually, I got a little confidence back. I realized there was nothing wrong with who I am–people calling me immature, well that is their opinion, and I no longer give a damn–because I know I am not immature, and my opinion is the one that matters here.

Obstacle 1: cleared

On to the next thing.

During diagnosis and treatment, I longed for guidance on how to “do cancer”, because I suspected I was doing it wrong. I could not deal with the Pinkness expected of breast cancer patients. I was far from the Livestrong “hero” shit. I screamed and cried and was scared, quite often. I looked and looked…to the point I once Googled the phrase “punks with cancer” or something like that, just because I wanted an alternate way of doing cancer. What is offered is “The Idiot’s Guide to Breast Cancer”, when what I needed was “The Asshole’s Guide to Cancer”, with chapters like “You Don’t Have to Wear Heels and a Pink Feather Boa to Infusion to Show Strength” or “(You Gotta) Fight For Your Right (Treatment Plan)”. What is prevalent is Komen and Livestrong–promoting a single ideal of how to behave if you have cancer, with shiny, happy celebrity patients. The only good thing I found to read during my final rounds of chemo was a biography of Joey Ramone written by his brother (which includes Joey’s final days with Lymphoma). I read and cherished it. I continued looking for ways to cope after treatment, as I slowly emerged from the drug and exhaustion induced haze over my brain. Of course, I was dealing with a nasty bout of post-treatment depression, which is common, but rarely spoken of in the cancer warrior culture.

Finally, I found blogs, which you compare to the zines of our old days. I had regained a little confidence so, I decided to add MY dissenting voice to that realm.

You said, “It’s YOUR VOICE. Cherish it. Respect it. Nurture it. Challenge it. Stretch it and scream until it’s fucking gone. Because everyone is blessed with at least that, and who knows how long it will last . . .”
That is what I’m doing. Am I doing it well? Who knows. But it is, as you say, “MY VOICE.” I’m not internet famous, or blog famous, or whatever defines a popular, well read blog. But the readers who’ve reached out to me seem to like what I say…even tho’ I’m what Kurt called a negative creep. Hell, if it were not breast cancer I was bitching about, I assure you, I’d have found some other topic–I could name a few now–but this is what I have the bad luck to know best.

There is no right or wrong way to do my blog, because it is all mine…to paraphrase you.

Obstacle 2: diverted

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I have conquered much in the past year. Reconnecting with who I was to get back to where I need to be, getting my first tattoo at 41 years old–a tattoo that is a band logo no less–to cover my surgical scar, rather than reconstruction. This would be considered immature by those I used to know, I would not have told them I was going to do it–hell, I probably wouldn’t do it all. My voice, my choice.

I did not have the good luck to be left to my own devices, I had to sever ties and declare my independence from the ones who would stifle my voice. But that didn’t mean I was totally alone. I had people giving me food, taking me places. But what was better was the emotional support system of another breast cancer patient and two ovarian cancer patients, who gave me all the courage I so desperately needed to have my own little Independence Day–they don’t stifle. They coaxed the voice out of hiding. For them I have nothing but love and gratitude.

***********************
In your speech you said, “I was possessed and empowered and inspired and enraged and so in love with life and so in love with music that it had the power to incite a fucking riot, or an emotion, or to start a revolution, or just to save a young boy’s life.”

I dislike the hyperbole in cancer warrior culture–the warrior-fight-battle language is a bit over dramatic; I prefer to only use hyperbole for sarcastic or comedic effect. “Hope”, “battling” and a positive attitude (which I lack anyway) did not save my life, better living through chemistry did that. So I’m not gonna say you or your music “saved my life”. Instead, you, your music from Nirvana to now, did something better. It helped me endure and thrive, and kept me sane. Your speech helped me see that all those nights listening to weird music my friends hated while I was in high school, created the inner strength I needed all along–to face all the suckage of cancer. I know this much is true when I’m in the MRI machine and instead of hearing the awful noises it makes, I hear Ministry and Public Enemy songs in all that clicking. I know this is true in those rare moments I reflect on my funky-tattoo-over-reconstruction decision, which flies right in the face of our boobies-obsessed culture.

***********************

You talk about having heroes, wanting to be a hero, hoping your daughters become heroes too. I don’t believe in having idols/heroes; celebrities, family members or otherwise. That is one little bit of the punk rock ethic that I will never shake off–look at who society sets up for worship–those suckers are NOT better than me. And on the flip side, I cannot imagine anyone would want the pressure and scrutiny of being a hero. So it is with some reluctance I dub thee my hero. And not because I think you are perfect, on the contrary, you’ve been fairly open and honest in showing your faults. When you wrote/sang, “There goes my hero, he’s ordinary,” you meant someone else, but for me, it is you–you are my Beatles, my Rock Against Reagan Concert, my Bad Brains, my Edgar Winter. So, in my eyes, according to your address, you’ve done what you set out to do all those decades ago.

These days, I still listen to the songs representative of my so-called immaturity, so I don’t lose my voice again. And I’m not always aggro-woman. I also sing along to Bob–“Oh my Little sister,don’t she’d no tears…ev’rything’s gonna be alright, ev’rything’s gonna be alright.” And whaddya know, I don’t not cry anymore, and it is alright now.

**All hail The Ramones

The Next One is Lord of the Rings Long

The next post is gonna be “Lord of the Rings”, butt-numbingly long, but hopefully not as slow going as “The Hobbit.” It should be a fast read. It is sort of a supporting player in the continuation of my story of funky tattoo vs. reconstruction–which I swear I will finish writing. This next post should give an idea of why writing it has been so hard.

This post, in addition to being a rather personal explanation of I got to where I am now, cancer in tow, is a thank you of sorts to readers who’ve commented on what I’ve written. It will explain why it helps me, more than I could ever express, to continue telling my story and ranting all over the place, and to bolster a much damaged confidence. Seriously, every bit of appreciation repairs me just a little.

A Baby Step

To all of those who’ve liked, commented or otherwise contacted me about the “Take the Mythical Image…” (on WordPress and Tumblr) BIG THANKS. Those of us who refuse or just cannot fit that image–because we know depression, or hate pink, or have mets, or omigoodness have some other cancer (heed the sarcasm there, please), I assure you we are not alone. Whether you choose to simply not be a part of The Image and step aside, or like me, you openly criticize it, good job…it is the needed baby step.
I know I am a broken record about things that irk me–The Image, the sexualization of breast cancer, BRCA testing (as research-good, sold as a tool to fight cancer-no it isn’t, yet), the over-study of the same causes of cancer over and over (alcohol bad, carrots good, we get it, move on people), the misuse of the words prevention/early detection…well, you get the idea…there are many things. IN my humble opinion, the only way to bring about change is to keep asking for it, keep the pressure up. I desire change in cancer and the world at large most desperately.

Ahh the Joy of Late Nite TV

Watching ‘Friends”, preparing for bed, I hear an ad come on for SC Johnson and company. The CEO, a guy named Fisk, was blathering on about the “family standards” of their products, so we as consumers, know exactly what (chemicals) are coming into our homes, in contact with our families. He says they go beyond the industry standard on this (although, I’m learning it is pretty easy to go beyond low standards).

Funny thing was, a few days prior to seeing this ad, I’d participated in a webinar run by Breast Cancer Fund, and it was mentioned how difficult it was to pressure SC Johnson to make these changes in their products. I think the moderator said something like, SC Johnson made a commitment to clean up their products…and then did nothing. BCF or maybe it was Breast Cancer Action (sorry, cannot remember and my laptop ate my notes–still struggling with technology) had to follow up and light a fire under the company’s butt! Then, and only then, did the changes come about.

Fisk failed to mention that.

So kids, beware of the truth in advertising. Some truth might be there, but we never see the whole story, do we?