Symbols Are Stagnant Institutions, Not Solutions, Nancy G. Brinker

Nancy Brinker is “seeing red” over the recent New York Times article detailing how some breast cancer patients are tired of the “pinkification” of disease (see her letter here, see what she is angry about here). Her letter was strange to me, and would be laughable except 1) as the head of Komen her voice will be heard (although she claims she is NOT responding as a Komen representative) and 2) so many people will agree with her, will not look at her defensive whining with a critical and analytical eye.

I find soooooo many problems with her letter—and I’m not even as staunchly anti-Komen as so many other bloggers!! But here are my gripes.

Well, Nancy, you say the Pink Ribbon now symbolizes breast cancer. You’re not wrong there.

You go on to say breast cancer is very personal for you. It is personal for me too, since, you know, I actually was diagnosed with it myself at age 38. It continues to be personal for me as I know I could have a recurrence at any time. It is personal for thousands of other patients currently living with metastatic breast cancer. What makes you think you have a monopoly on personal feelings about breast cancer? Your claim of it being personal just illustrates your tone deafness, your inability to realize the cancer demographic is made up of lots of individuals with VERY different perspectives. We are not homogenous, and no one’s personal relationship with breast cancer is more important than another’s, not even yours.

You say you made a promise to your sister to work to find a cure, to raise awareness for the need for testing, treatment, research, cures, and to raise money for research. Let’s unpack these promises, shall we?

Your first promise, to find a cure, has not been fulfilled. The second promise, to raise awareness, you’ve been successful—congratulations. But that awareness has not translated to meaningful results—see broken promise #1. Instead, you continue to work on “awareness” as if no one is aware, as if you only wish to do what you know, rather than face new challenges. This has made you, your organization, and other pink organizations, stagnant institutions. The stagnation is killing people. Rather than evolving, than checking off the “raised awareness” task from your list, you continue to only do what has been done for 20+ years. That’s why my avatar is the anarchy symbol over “A” (not YOUR, copyrighted) pink ribbon. We need a little anarchy—or at least an overhaul.

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And oh my goodness, the third promise you state in your letter. You’ve raised billions, but has it gone to research? No. More money goes to education, screening (and screening is ALWAYS controversial), and of course to fundraising (it takes money to raise money) than to research (see here, page 7).

You list the (non)-achievements of the Pink Ribbon as allowing Komen to stage races with over a million racers, establishing partnerships in numerous countries, and engaging thousands of volunteers. I am NOT impressed by any of that. Big deal, people ran in races—there are plenty of marathons out there. The partnerships—good grief, look no further than the recent fracking/drill bit fiasco for the worth of those partnerships (but if anyone wants to look further, well, there’s the KFC chicken, the Dietz & Watson—because cured meats are so good for you, and all the shopping, shopping, shopping). And you provided opportunities for volunteers to do what they do: volunteer. Hey volunteers are gold. But their work needs to be meaningful. It seems all the work has achieved is perpetuating your stagnant institution.

You close with “Pink Ribbons matter”. I hope that was NOT a reference to the “#(whatever)livesmatter” campaigns. Komen has already proven time and again their inability to come up with original ideas. See your own admission about “borrowing” the red ribbon idea from the AIDS movement. How about the elephant stolen from METAvivor last year in that stupid Kohl’s campaign?

Originality is part of evolution.

Yes, lives matter, mine too. Most of the non-achievements did not benefit me. Early detection and screening? Nope—I tried that, but the mammogram (or rather the radiologist) did not find my cancer. Sure, the awareness raised by pink ribbons funded research that created drugs like Herceptin, which allows me to still be here writing this critique. However, unless I’m mistaken, the money raised for Herceptin research came from Avon—but never mind, let the ribbon’s ubiquity claim that prize. But all the races, pink ribbons, and volunteers did not prevent me from getting cancer in the first place. Ribbons won’t prevent my likelihood of recurrence and metastasis.

Right now, Pink Ribbons don’t matter. Even non-breast cancer patients are tired of them, have become immune, sometimes blind to them. (That was one of the points of the piece to which you object–how did you miss that?) Pink Ribbons are stagnant and Pinktober has become an institution, celebrated right along with Halloween. They symbolize breast cancer, but the threats to me and others remain. The death rate has not really changed. (Sure, there are more survivors, but the controversy surrounding the screening debates can tell anyone that it’s easy to create more survivors, if you create more patients that maybe never should’ve been called patients. But I digress). That symbol is no solution for my breast cancer, for my friends’ cancers.

Here is my challenge to you Brinker—realize how ridiculous Komen has become and do something about it. I think Komen is incapable of evolution. Prove me wrong.

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Heartstrings

My cancer “story” is not cute, nor triumphant (arguably, I mean, I AM alive still), and it does not tug any heartstrings. I put story in scare quotes because lately I’ve been so very tired of every single cliché in cancer—even clichés I use, like “tell your story”. I don’t really object to the phrase, I just hear it too much. Anyway, enough of that ramble.

I’m responding to the Dog Day picture posted by Komen, of dogs wearing bras with balloons in them—you know, for “the cause”, for “awareness”. I and so many cancer bloggers I read objected vehemently to the photo. How can those of us objecting to the sexualization of breast cancer combat this?

Well, for years bloggers have been combating this by writing about the other side—the one that includes pictures of ugly scars, stories of failed treatment/surgery, stories of recurrence or metastasis, stories of the lovely side effects of treatment (hemorrhoids + diarrhea, anyone? no? just me?). But the mainstream media (I swear, I’m not Sarah Palin the way I go on about the mainstream media, there is just no other way to phrase it) prefers the pretty boas on women who kicked cancer’s ass. That does not represent me.

But neither do some of the stories that tell the other side.

I “only” had a lumpectomy, luckily because my 5×6 cm tumor was shrunk by chemo (I’ve had an ugly post about breast cancer competition stories in the works for ages, and one day I’ll calm down enough to finish and post). So I have no traumatic surgery photos to post. In fact, the photos on this blog show a masterfully completed surgery with a neat and tidy scar, covered with a tattoo I got in “triumph”. I have no photos of my hairless self, pics of me in chemo. I didn’t want to document or remember any of that. I was photographed when my hair first started coming back for a work event; I felt I could not object to the photo being taken since it was publicity for the event. These days I wish I’d refused, that the photo did not exist.

I mean, I do have my original images of my first mammogram, that show a big white blob in the left breast, with no matching white blob in the right. It could be a cautionary image-story of how a tumor fools a radiologist into believing a woman just has dense breasts. But it isn’t impressive, eye-catching stuff.

I did not have as hard a time with side effects as other patients I’ve met in real life and online. I won’t say I “breezed through” treatment. Indeed, the fight with the nurse practitioner over whether I had shingles or Staph was a pain in the ass. Especially being put on meds I did not need and did not solve the problem, and the tenacity I had to use after chemo and surgery to get a correct diagnosis. But that is a minor speed bump compared to horrible stories I read.

Lots of metastatic stories I read bring up the fear of dying before seeing children grow up, go to college, get married, have grandchildren. I don’t have kids and never wanted them. So my story is not poignant, would not work in one of those ads designed to make people reach for tissues and credit cards. My story has no such tragic element.

Furthermore, I’ve made no grand contribution to society. Other than my parents and a few random relatives and friends, I’ve made no mark on the world. I’m just a smartass more interested in pets than people. My personality and my story will not send the masses to wipe tears and open checkbooks. My story and (lack of) pictures cannot combat and get attention for breast cancer awareness the way images of women doffing bras for the cause, funny dogs in bras, women pulling a warrior pose, and mothers afraid of not seeing their children grow up, can to get the public eye.

Of course, I am doing the thing I hate most: comparing cancers, getting into the cancer Olympics, who has it worse bullshit. I don’t have it bad—I participate in discounting, I “only” had stage 3, I “just” had a few side effects. Again, that comparison, who-has-it-worse, crap is a story for not just one, but two, future painful posts.

So why participate in all the “tell your cancer story” activity? I’ve admitted a few times here on this blog and other social media that at this point, this blog is mostly for self-therapy. And to lend a digital hand to others who have had or currently have cancer, who have similar crotchety views like mine—to let them know they are not alone—the way I felt in that post-treatment depression period. I’ve given up trying to convince those without cancer and those that embrace Pink-rah-rah-fight-like-a-girl stuff around to my way of thinking.

But then I think, perhaps the blandness, the ordinary-ness, of my story is in fact what is so horrific about it. Sure I had some family history—certainly not as much history as others I know of. I was just going along in my life, figuring cancer was a likely eventuality for me, although I expected blood pressure/cholesterol/heart disease issues first—that was the more common family history. Cancer would be my post-retirement issue.

I wonder what the non-cancer general public thinks when they see the trying-to-make-you-cry cancer ads. Do they hug their children, pause in momentary gratitude, and then move on, figuring “it won’t happen to me“? I mean, I sure thought that way. Even now, 5 years later, I’m still vaguely surprised I had cancer—that it happened to me. Shocking getting-cancer-young stories always happened to somebody else.

If I knew of a way to post a picture or to distill my cancer experience into a pithy quip or soundbite that would gather attention, that would combat the clichéd ads and pictures already creeping in before October, I would do it. But, I don’t believe in creating some pink boxing glove inspirational image, I have no tragic pictures or stories. All I have is an ordinary tale: I got cancer when I did not expect it; I elected to get treated; and now, so far so good. No heartstrings can be tugged—and I’m not the type that likes that kind of thing anyway.

Of course, it isn’t really that simple.

Cancer continues to have a profound impact on my life. Some of it is still physical; the tiredness unnatural for one in her 40s, the remnants of brain fog, the pain and tenderness to the point of abhorring touch on the breast that had cancer—and of course that dip where the nipple used to be. Much of the remaining impact is mental and emotional, and altered views—I won’t say cancer lessons. They are lessons, just not socially acceptable lessons—again, blog posts for future days.

I’m just so tired of cancer culture, especially breast cancer culture. And I’ve only loathed it for 5 years; I know there are other bloggers out there who’ve been criticizing this mess far longer—and so much of the culture remains unchanged.

At this point, my cancer experience is not one of inspiration, not one to tug any heartstrings—it just a story of weariness. It is not good copy for ads that get attention and money.

Looking At Pictures

So my most recent posts have been about the spring runs/walks/arts events to benefit local breast cancer organizations. Last week was the annual Komen on the boardwalk at the beach 10 minutes away from my hometown. The weekly freebie newspapers just came out yesterday and the pictures were all over the covers—bright pink splashes on the front pages.

Usually I avoid those rags of local “news” this time of year and in October because of the breast cancer celebrations coverage. But I did pick a couple up this time. I stared at the picture of the survivors’ parade. Every single woman wore a bright pink t-shirt with a lighter pink ribbon on it, the word survivor under the ribbon. A few women wore pink wigs, and/or pink boas. One woman wore a boa/necklace/garland of paper pink ribbons of various sizes. I realize that if I thought such races/walks were a useful pursuit (I do not), if I called myself survivor (I don’t), if I embraced the Pink (I really, really don’t), I’d be in that survivors’ parade wearing that t-shirt. So why aren’t I?

It is strange how humans behave I guess, what we believe, what social groups we join. I just had a conversation the other day with a client about how people start to take on the beliefs of those they live near and interact with (we were discussing how both our parents were becoming more conservative and saying offensive things—obviously things they’ve heard from other folks they interact with now that they are out of the work force—very ugly stuff). But I wonder what made me reject all that Pink stuff that is the norm in my region. The others in the small support group I attended (for people diagnosed with any cancer under the age of 40) were mostly disdainful of Pink, a few loved it. But all the major breast cancer groups that organize and/or benefit from these events recite the Pink, stay positive script, which is why I avoid them.

I stared at the picture of the women in pink shirts on the cover. I cannot imagine loving any ribbon so much as to wear a garland of them. I looked at pictures further inside the paper—some women in pink pants and hats and…just covered in Pink! Fortunately, no panties and bras pulled on over bike shorts like that other beach event last year. But still.

In the years from diagnosis up until last spring, these pictures filled me with disgust. All I could think about was how Pink and the stay positive pressure had harmed me. (For those who’ve not read my other posts, in short—the Komen dogma of get your mammo for early detection did not work for me, and the be positive at all costs made me miserable until I figured out I’m Allowed to be however I wanted—it’s more complex, this is the Cliff Notes version.)

I’m a bit more detached now. It makes me a little sad I guess—I know my natural social awkwardness, and trait of playing devil’s advocate, or desire to go against the grain are a few of the reasons I do not join the Pink parades. I think it would be easier if I would just go with the flow, if I could. But I can’t.

Always questioning everything can really suck sometimes.

But in an uncharacteristic move from someone calling herself Cancer Curmudgeon, I take a moment to be grateful (no griping—what???). So what if I can’t walk in that Pink parade? I found other bloggers that have many similar opinions and I found solace there. I started—and continue—blogging to keep in contact. For one who does not make friends easily, I began to do just that. I even began to “friend” some on my personal Facebook—waaaay out my comfort zone. Too many bloggers and folks to list for fear of missing someone, which would mortify me if I left anyone out and offended in that way.

Sure the women in the pictures of the parade look like they’re having fun. But I’m having fun too. And I have peace. It may not seem like it when I go on rants or give in to the anxiety—but I do have it. Because I know others feel the same way. At some point a post about this value of what others would call “complaining”—and a ponder on that word—will be written. Right now it’s enough to know I’m not the only one.

“Walked out this morning
Don’t believe what I saw
A hundred billion bottles
Washed up on the shore
Seems I’m not alone at being alone
A hundred billion casatways
Looking for a home”

“Message in a Bottle” by The Police

As Close As It Gets

As I’ve said before, I’ve never written that one post that lists all the things that I dislike about Pink, and all the Breast Cancer Awareness Month crap, and the many things I find wrong with the cancer patient experience/role we are expected to fill. It’s too overwhelming, so I just write posts about bits and pieces, one at a time. Many others have written excellent articles, posts, and books on the topic–I’d rather just let those do the talking for me. But none have come as close, so accurately and comprehensively as this Washington Post article.

I survived breast cancer, but I hate breast cancer awareness month. 

Complicated Relationship with Hope

My relationship with the word—and the concept—hope is complicated, like a love/hate thing. For the longest time, during cancer treatment, I hated the word hope. There. I’ve said it.

The reason for the hate is pretty simple: for me, it got tied up with all that Pink and Cancer-is-Positive goo that dripped from the walls of the treatment center. While the small (small-town) infusion room served patients with all cancers, most of the patient artwork on the hallways leading back to the infusion room must’ve been done by breast cancer patients. The framed poetry and artwork had all the familiar Pink signifiers, and “hope” figured prominently. Framed poems with pink squiggles surrounding the words, pink abstract paintings (with detectable words like “hope”, “strength”, and “courage”, of course), pink, pink, PINK. So, like a science experiment in which a subject gets a painful shock each time she encounters something normally considered “good”, I began to react to the word as if experiencing a painful shock. The word to me meant those beatific smiles, bald heads, feather boas and pinked out clothes. And I just did not fit into that oversold image, and never will.

I used to gripe about the word during support group meetings. The passivity of the word, in its verb form, just made me nuts—it still does. I don’t want to sit around “hoping” for scientists to come up with better treatment and a cure for my cancer. I want to push, scream in their faces, demand it—for all the good that would do (none, duh). I don’t want to hope people “get” how the reality of cancer is so different from that smiling Pink image, I want to tell the truth up front—again, for all the good that will do. My militant anti-Pinkness was beginning to form back then, out of my pre-cancer mild annoyance with Pink hype and selling. While I could not grasp and articulate what pissed me off exactly, I just knew something was off. “Hoping” was just not active enough. And I already knew that doing what actions I could do, was supposed to do—the eat right/exercise/don’t drink bundle of individual cancer patient responsibilities so we can later be blamed—were no absolute guarantee against cancer’s threat to me—just a way to make odds slightly better.

Having the noun version of hope is a little trickier. Everyone needs it, should have it. This rant is in no way criticizing or belittling folks who have it. It’s just that my hope has always been tempered with reality and a desire to avoid the delusion I think is harmful in the Pinkification of the cancer story. But here I have to question myself. I went for a mammogram at age 38 because my 48 year old aunt had just been diagnosed. “She’s too young,” I thought then. When my nipple inverted a month later, I told myself that despite the fact that family history meant a higher likelihood of my own cancer, it seemed ridiculous that I would get cancer at the same time, and at my younger age. “What are the odds”, I thought. Or was I hoping? I still don’t know what the odds are in my scenario. Doesn’t matter anyway, because I did have cancer, right then and there, 5 days shy of turning 39 years young. Back then, I did not know my chances were 1 in 233, rather than the ballyhooed 1 in 8. Still, as much as that 1 in 8 is used in fear-mongering marketing tactics, I would think, well, I’ll be 1 of the other 7. Or did I hope it? Does everyone think/hope they’ll be one of the other 7 (or 233)? I’d guess yes. Fear can drive us to mammograms of questionable usefulness, but the whole time we figure we’ll be one of the others, not a “1”, at least, not just yet.

So my reality-laced hope, or hope-laced reality, comes with thinking about odds and likelihoods, and yet I still seem to draw the short straw. Against hope and odds, I was a “1”, not one of the other 232. This fact was and is an effective destroyer of hope for me. To be fair, it is not just in matters of cancer I’ve drawn short straws. There’ve been many times of getting that short straw in other areas of my life that have taught me to hope that things will go the way of the bigger odds—but look out for that unlikelihood off to the side. It can happen, it did happen too many times to me, and I learned that hope is not so useful to me. Preparing for the worst, bracing myself, serve me better. 

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But I sit here today, waiting to get an MRI that will tell me if my cancer has returned, or if I’ve got a new one. I am utterly helpless, powerless, to do anything about it. The only activity I can engage in is to hope that I’m not joining the smaller number again, in this case the 30% of mets patients. Granted, my brand of hope is not the smiling Pink kind. My brand has a black rock group t-shirt, tattered jeans, black nail polish, greying hair, and a snarl. Because that is who I am—not an effen feather boa in sight.

What else can I do.

First Ribbon Problems

Preface to a Series of Rants Called Symbols Are Not Solutions

 Full disclosure: I have one of those stupid magnetic ribbons on my vehicle. It has been there since I got the car in 2004 and has been bleached white by time and sunshine. I can’t even remember the original color; I only remember it supports some animals/pets non-profit. I put it there before it ever occurred to me I’d one day get cancer, before I’d come to hate ribbons and ribbon culture. The thing is, I cannot peel it off now, the damn thing is seemingly welded onto the back of the car. Nine years is a long time.

I know as a breast cancer patient, my complaint against all ribbons is like having first world—or is it first ribbon?—problems, so I should not complain about ribbons and symbols, but I’m going to anyway. I know that I indirectly and directly benefited from Pink dollars and I’m grateful but I still want more and better. I recognize that since other ribbons/cancers do not get the same amount of attention, that some folks might think breast cancer patients who speak openly against Pink sound like whiny rock stars of the 90s, who complained about being rich and famous. But I hope that all the awful issues pointed out about pink ribbons can serve as an example of what can go wrong in any or all charity campaigns, since so many disease/ribbon campaigns seem determined to imitate Pink.

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It’s just that I’m flat out tired of all ribbons, and even more tired of the need for them. And I mean all the damn ribbons, not just that Pink bully ribbon. I’m tired of the assembly-line, factory-like process: someone gets an idea that a certain cause needs attention, assign the cause a color, assign it a month (who cares if that month already has many other causes assigned to it, except don’t chose October because then the newly anointed cause won’t get any attention, because, you know, boobies), make a ribbon, hold a charity event, and then forget about it every other day or month of the year.

When September 1 arrived, I was confronted with a number of blog posts about cancers assigned to that month, in a plea for attention as Pinktober loomed ahead, and I became very discouraged. I was struck by how diseases have been reduced to symbols and the symbols are scrambling for attention in the shadow of the big Pink Machine. People are getting immune to seeing ribbons—it’s like, oh, here’s another one. Is there a conversation about that?

Sorry, I am not some professional investigative journalist who has the time to research and write about the history of ribbons; I’m a working woman with a physically tiring service industry job who blogs in down time, which is limited because I still find post-treatment life tiring. I think some collective societal memory can come into play here, however. I mean, remember “tie a ribbon around the old tree?” Remember the yellow ribbons for all the recent wars of the past few decades? Remember the red AIDS ribbons of the early 90s, which have somehow been forgotten as that disease got pushed aside, and now red has to do with February and heart disease? We all have some knowledge and ideas about ribbons and the surrounding culture, because we see and react to them every day, and have been doing so for a few decades.

I’ve been in a dark place lately. This will become apparent in subsequent posts. Proceed with caution. Unpleasant concepts loom ahead.

Yep, I’m complaining again without offering solutions, but then, I’m not so sure anyone will agree my complaints are even valid and in need of attention, but oh well, it’s my blog. I’m not writing some professional, sociological paper on this topic. I’m just a hick in a redneck town; I’m not equipped to make an informed, cultural critique like others. I’m just calling it like I see it. I hope some of my negative views expressed over the next few posts can be changed.

To be continued.

 “Just because you’re offended, doesn’t mean you’re right.” — Ricky Gervais

The Curmudgeon Formerly Known as Cancer Patient

Yes, that is a reference to the musical genius, who fought a battle with a corporation for artistic control and eventually was able to resume being Prince. And yes, I am revisiting the issue of what to call myself, and the struggle with accepted cancer norms, like the battle language.

The other day a blogger on Tumblr wondered, if not fighters or warriors, what exactly are we? And another wondered how to get a loved one to stop using warrior talk in conversation with her, and I have a similar problem, in that my own mother keeps telling me a positive attitude helps one beat cancer (because she refuses to see the scientific proof otherwise). If that were true, I have a friend who should still be alive, instead of me, the realist who should not have made it, apparently.

Well, shit, I wish I knew the answer to these things. There are so many unknowns in Cancerland, that I wish I could embrace the warrior, ass-kicker talk. But I cannot, leaving me with one more unknown, another hassle to navigate. I do not actively choose to not embrace it. I am simply who I am.

It was easier when I was in treatment; I could dodge the warrior and survivor labels by referring to myself as a cancer patient. But now I am out of treatment. I mean, I still need to identify as a patient when I call the cancer center/oncologist’s office. I say my name and that I am a patient of Dr._________, and what I mean by that is, hey, you have a very thick file with my name on it, filled with my info, so let’s cut to the chase so I can get my appointment changed or my question answered.

So WTF do I do and say now? What do I call myself, and how can I interact with the rest of a world that engages in cancer warrior talk?

I know some of how this language came into use is revealed in Gayle Sulik’s “Pink Ribbon Blues”; she covers various contributions to how this language became acceptable—and for once pink ribbon culture is not the only culprit, yellow bracelets have a hand in it, too, if I remember correctly. I’ll have to re-read it, I know. But knowing the how and the why probably won’t help anyone figure out how to change, or at least challenge, this acceptable language of cancer.

I tend to define myself, not just regarding cancer, in negatives; I don’t want this, I don’t want to do that. Hey, I’m a fan of The Ramones and lots of their songs have titles like “I Don’t Wanna Grow Up”, “I Don’t Want to Fight Tonight”. I seem to approach this conversation in cancer the same way: I DON’T WANNA be called fighter or survivor! I DON’T WANNA run a race while wearing pink! I DON’T WANNA participate in pink ribbon culture.

But then I remember, the band was sometimes positive—“Now I Wanna Sniff Some Glue”, “We Want the Airwaves” and “I Wanna Be Sedated”. Well, OK, maybe not positive, but they didn’t just always list stuff they did NOT want—they listed what they wanted as well. There is an online game, and I once found a funny picture, devoted to what The Ramones did or did not want, just because that is what most of their song titles addressed!

edited funny ramones

So if I’ve got the “don’t wanna” portion covered, what do I want?

Once upon a post, I wrote that I wanted a guide book of sorts for how to do cancer:

I longed for guidance on how to “do cancer”, because I suspected I was doing it wrong…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)”.

And yes, that final imaginary chapter title is another song reference. I’m going somewhere with the music references.

I’ve said many times, littered in various posts on this blog o’ mine, that not everyone does cancer the same way, nor should that be required. Maybe this blog, with every post I write, I’ve written my own personal not-so-silver-lined playbook on how to do cancer, the one I wanted while in treatment. Clearly, I deal with my cancer and all the surrounding bullshit by looking under rocks, pointing at the ugly worms and bugs underneath, trying to understand the whole truth behind whatever health “news/ads/feel-good-news-filler” is being broadcast in a sanitized manner (“…the hidden side of everything” is part of a tagline of a favorite podcast program of mine). I do not find inspiration and coping mechanisms in the packaged pink message, so I draw it from anywhere and everywhere else.

Granted, because of who I am and my tastes, I tend to draw inspiration from some strange and disparate sources. I think one can tell from most of my blog that I won’t be found listening to Kool and the Gang’s “Celebration”, that sickening staple of pink marathons (because having cancer is such a party, NOT).

A few posts ago I mentioned a NPR interview with Elmore Leonard, and his story about filmmaking with Quentin Tarantino that gave me a much needed reminder of my ability to know my own cancer better than random people who deem it fit to tell me (or anyone) how to treat cancer. I think I once repeated the infamous Conan O’Brien quote from a commencement address he gave in the wake of his fracas with Jay Leno: “What Nietzsche should have said is, ‘Whatever doesn’t kill you, makes you watch a lot of Cartoon Network and drink mid-price Chardonnay at 11 in the morning.’” I have much affinity for O’ Brien; his new TBS show began just as I was about to start treatment. Sleepless, I watched his new show and reveled in his new success, and as I look back, I think I may have irrationally and illogically regarded him as a lucky charm: he prevailed, and then, so did I.

But it isn’t just Prince, The Ramones, Beastie Boys, O’Brien, and Tarantino I’m building my playbook from. I absorb and apply any tidbit that works. There are likely hundreds of bits of inspiration I’ve found that simply would not be considered inspirational, or even recognizable, to most folks, but they work for me, so I use the bits. The biggest, of course, is Dave Grohl, ironically, a “survivor” it there ever was one, given his former band mate’s affinity for heroin and guns. In many interviews with him I’ve heard recently he has talked about the power of not knowing the “right way” of doing something, he has touted the DIY ethic that brought alternative musicians, himself included, to great fame in the early 90s.

source:bandlogos.wordpress.com
source:bandlogos.wordpress.com

It is this DIY ethic I’ve applied to my cancer playbook. It isn’t pretty, this book, it is filled with the heavy and sometimes not-so-cheery-fluffy-pink things that I like. The only smiley face in it is the old Nirvana band logo. The book is not yet finished and maybe never will be. I still don’t know what those of us who object to a label of survivor or warrior should call ourselves, although I’m sticking with Cancer Curmudgeon for myself for now, given the accuracy of the name. I still don’t know how to have conversations with others who rattle on about positive attitudes, or who use battle talk. But I am always searching for those answers.

But I do know this: you can borrow a page from my un-pretty book if you need it. And I know you can make your own playbook. No one has to accept the cancer mainstream language and attitudes if they do not fit. It is difficult, but it can be done. The more of us that reject the sanitized and non-inclusive versions of cancer presented in the mainstream (need I remind everyone that pink ribbon culture ignores those with Stage IV, and any other kind of cancer, hence, non-inclusive), the more our voices of dissent will be heard.

Here’s to a new playbook that replaces that damn pink one.