SELL!

I am re-posting what I wrote a year and a day ago. Why? Because the issues are boiling up again. (The relentless repetition in CancerLand Culture deserves a post of its own some day, I’m beginning to view relentless repetition as a weapon.) In my view, and I think others share this view, medical establishments are misleading the public with their ads focusing on patients fighting cancer, and winning. Rather than leading a change in the discourse, a change focusing on science and facts, some large “name”, as well as some small-town no-name, facilities have chosen to perpetuate the dominant, persistent, same story-different day narrative of cancer as this opportunity for personal growth, so patients can rise to the challenge and beat cancer–along with a little help from staggeringly expensive treatments provided by the facility in question, naturally.

Some would say it’s just as bad when a fundraising organization does this, since they are often a resource for medical facts for the newly diagnosed. I don’t completely agree, but I still think the images they sell with the narrative are repugnant. But it certainly is not new, it keeps popping up, as I say in this old post. Lots of folks were upset with the Stage 4 martial arts patient in the Komen ad last year; I just thought it was BUSINESS as usual.

I don’t know what the answer is-yes there needs to be funding for research and so far the selling of positive, upbeat, winner patients (and boobies–don’t forget ta-tas and immaturity as a selling tool) has worked. To me there is no use in denying this, in fact, it needs to be recognized and discussed. I am simultaneously repulsed and grateful (see Burden of Gratitude). Cancer patients are commodities. Some others in the community likely think: “So what? As long as the money pours in to do research so maybe I can survive, who cares?” And maybe they have a point. But it comes at a cost (again, see Burden of Gratitude).

No I don’t have a better idea–that is not my field of expertise, so it is not very fair to expect a solution from me. I’m just complaining as usual. Wondering what you all think of all this. All I know is, there is something very unsettling, very creepy about it all. And certainly a whiff of dishonestly, of deception.

Anyway, am I a Cancer Patient or Blender? What are you?

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.

random find

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.

What Is The Real Battle Here?

For all the battle language that I still loathe in cancer, I can’t help but employ it when it comes to this. How can we “fight” the presentation of breast cancer as sexy fun times (the latest being the Komen dogs, but I mean the Coppafeel crap and the ill-advised Young Survivor bracelet thing too)? Is it worth a “war”? I used to think it was worth starting up a “battle”; I’m a bit less sure these days. But here is a post, or a suggestion (?) I had two years ago. Mostly, it is me trying to explain why sexualized cancer hurts. But these days I despair of making anyone understand. But for what it is worth–another re-run:

How About a “What Cancer Really Does to Breasts Day”?

I wasn’t going to write about No Bra Day, because 1) so many other blogs I read have said most of what needs to be said, 2) why should I give it more exposure and attention, and 3) I wrote an overly long, overly wordy piece this summer already, back when there was this other No Bra Day (how many are there?!). The earlier piece, I Don’t Want to See It, is mostly crap I wish I had not written, only the final 5 or so paragraphs are worth reading, and some of the sentiment of those will be repeated here.

I changed my mind because as I started mentally ranting I realized that ignoring it won’t make it go away any more than giving it more attention will (more on this theory, keep reading). It deserves all the outrage that can be had.

Who the hell organizes these No Bra Days? There is no organizational name on that graphic (everyone has seen it I’m sure), so I guess it is just some idea someone passed around on Facebook (sorry, I still cannot have a FB page for personal, non-cancer related reasons, so I’m dim on Facebook things). How the hell does it benefit anyone? Don’t bullshit me and say it raises awareness, especially when the top line of the graphic reads “support breast cancer”. Sounds like the purpose of the day is to increase the incidence of breast cancer—the graphic doesn’t even bother to discuss support for patients in any way.  It’s just another excuse to sexualize a disease, and to be childish and talk about boobies. Again.

What I am saying is divisive and angry; I know and do not care. I am so fond of the quote “just because you’re offended, doesn’t mean you’re right,” (Ricky Gervais) and I know that just because this event and the participants offend me, I’m not right. Lots of folks, including breast cancer patients, think all this is just fine, so it is doubtful that this event will cease to exist. But I AM offended and right or wrong, I’m going to gripe about it.

Setting healthy ta-tas “free” doesn’t support this breast cancer patient, again, not that this event even bothers to pretend to support any patients, it is supporting breast cancer, remember? It just reminds me of what cancer did to my breasts, and to other breasts. The scars, the ugliness, the pain and surgery. Need I go on? While I can begrudgingly accept that people who donate or participate in Pink have good hearts even if I hate Pink, I have NO appreciation for anyone involved in No Bra Day. Do NOT expect any gratitude or applause for the participation from me. I’m glad that these women are still healthy, still have breasts unmarred by cancer, but I really do not want to be reminded of what I lost. To those who organized this No Bra Day, I consider you insensitive, thoughtless jerks.

I know this day, the participants, and whoever organized it will get praise from many corners—but a quick scan on Google and other blogs gives evidence of some criticism about this event. I wish there more outrage about it. While I have no hope these days of the Pink machine slowing down, I yearn for more concrete ways to express my extreme dissatisfaction. This No Bra Day is one of the most egregious examples of how a disease has become the plaything of an adolescent, boobies obsessed culture.  If I were rich, I’d buy a million very covering and very supportive bras and throw them—well, somewhere, since there is no physical headquarters for this idiotic nonsense. Maybe I’d just scatter them about a big city street, to stop traffic and get everyone to see how at least this one breast cancer patient really feels. Sure, that would just be me throwing a childish tantrum—but the organizers have proven that they are not emotionally or intellectually adult enough to understand the lengthy, smart essays criticizing the event.

Source: etsy

Why doesn’t someone come up with a “What Cancer Really Does to Breasts Day”, gathering and presenting all the pictures of so many bloggers (myself included, I would do this) in various stages of lumpectomy/mastectomy, reconstruction or no reconstruction? There are certainly plenty of said pictures on the internet. I get why established groups or projects cannot do this—with establishment comes the need to “play nice”.  Being a socially awkward, complaining Curmudgeon—in real life and in the blogosphere—means I seem unable to play nice.

I’m sure many would find a “What Cancer Really Does to Breasts Day” objectionable and offensive (see this is where I can use the Gervais quote to my advantage). But here’s the thing: not wearing bras, or even those “tasteful” Pink ads featuring topless, strategically covered, healthy-breasted models for that matter, do nothing to make anyone understand the reality of breast cancer—other than show off what to those who objectify boobies will be “missing” should cancer afflict any of these women. The current socially acceptable image of breast cancer is the bald-headed woman in a pink t-shirt at a run or walk, smiling and being strong. To me it’s like a sick before and after scenario: women before cancer can be sexy and flaunt naked breasts for cancer awareness, women after breast cancer surgery need to keep covered, need to become unsexy soldiers to admire for bravery, but not to be desired.

Seeing what breast cancer is capable of, and what women who’ve had scarring surgery are capable of, seems more logical and helpful to me. On a personal level, it certainly would’ve helped me when I was recovering from surgery and follow-up radiation, wondering what to do. Instead I saw bikini clad women in ta-ta breast cancer ads, and felt horrible, my emotional wound constantly re-opened.

I loathe the battle language in cancer, as I’ve mentioned often enough throughout my posts. What I hate most is that it is used mainly to blame “soldiers” who’ve “lost their battle with cancer” because they “didn’t fight hard enough.” I rarely see war talk applied in terms of a grand battle plan. Why isn’t it applied here? A good general goes into battle prepared, knowing as much about the enemy as possible—their weapons, strategies, the size and the location of the enemy, and what the enemy does to prisoners. Would it not make sense to show what the “enemy”, breast cancer, does to these “soldier” women? How can this proverbial “battle” be fought if everyone is refusing to acknowledge the “battle scars”? Oh right, we’re not supposed to be victims or prisoners, cancer happens to us, but there should be no lasting mental effects, and no one wants to see the scars (as the summertime fracas with Facebook and the surrounding conversations proved)—we either win or lose, and it’s all on us, even if the weapons (medicine) fail the soldiers, no matter how hard we fight. Yes I’m being sarcastic.

This mass delusion of only showing healthy breasts in regards to breast cancer has got to stop. Yes, it is good to think positive, to dream, and to champion the bright side of life—even if a Cancer Curmudgeon just won’t do that. But to completely ignore the reality, to not face the ugliness or pain cancer brings, I assure everyone, it doesn’t make the ugliness or pain cease to exist. Furthermore, wouldn’t seeing pictures of women ALIVE after scarring surgery be, I don’t know, positive? I remember being told on HuffPo this summer that these scars should not be shown. Hope she never has to go through it, hope she never has to see that ugliness in the mirror, hope she never needs to see my example of one who turned an ugly scar into a triumph.

I prefer to know what I’m up against and I’m tired of a socially acceptable conversation about cancer in which everyone covers their eyes and ears, singing “la la la”, like nothing bad ever happens.  Sometimes, ignoring the bad stuff only results in a sucker punch later.

Only three types of people tell the truth: kids, drunk people, and anyone who is pissed the fuck off.” –Richard Pryor

Sometimes people don’t want to hear the truth because they don’t want their illusions destroyed. –Nietzsche

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.

My Different Cure Campaign This October

(This post is a bit of a goof, more about music than cancer. Don’t take me too seriously.)

A few days ago I ran across a cartoon on Facebook—which I immediately shared on my Curmudgeon page—featuring several wild-haired characters stretching under a banner that said “Race for The Cure”. The one “normal” looking person says something like, “so this race isn’t to fight cancer?” The joke of the cartoon refers to the doom and gloom, post-punk, goth band The Cure, whose lead vocalist, Robert Smith, had the recognizable wild hair imitated in the cartoon. I found the cartoon hilarious because when I first got cancer and phrases about racing, biking, whatnot for “the cure” infiltrated my life, I had to actively remind myself “the cure” was about cancer, not The Cure—the band I sooooo loved in my goth-teen phase. (And yes, I still listen to those great albums.)

robertthen1

As litigious as Komen has proven itself, I’m a little amazed they have not gone after a band calling itself The Cure. Never mind the fact The Cure put out their first record in the late 70s, well before Komen existed, would that matter? Komen seems to think they own the words, and indeed have trademarked the phrase. Ugh, I hope I’m not giving them any ideas. Let this be a warning Komen, if you ever go after The Cure I will not rest until I see your utter annihilation. Yes, I love that old band that much.

My biggest form of therapy in this post-treatment life has been music, as I’ve mentioned in several posts. I’m lucky that deep in the heart of Pinktober, The Rock And Roll Hall of Fame announces their nominees for the following year’s induction ceremony. It gives me a much needed distraction when even my beloved Halloween pumpkins have been painted dreadful pink (see this old post). Yes, it’s silly an old alterna-girl should care if a band that was not “popular” back in the day should get into an institution; I mean punk/indie music was about rebelling against institutionalized rock. I wrote about this a couple of years ago in the post I’m In Love With That Song.

So this is my plea to those who vote or have a hand in the nominees  for The Rock and Roll Hall of Fame for this October. (Questlove? Maybe you can do this for me?) Please nominate The Cure again. As a breast Cancer Curmudgeon, I am so sick of the rah-rah, the pink madness of the month and everything associated with Komen’s greedy possession of the phrase The Cure. That is not to say I don’t want a cure for cancer—don’t be absurd, of course I do. I’m just still stuck in this place I’ve been all summer where practically ANY word or phrase in the world of cancer drives me nuts (empowered, powerful, journey, fight, battle, just…ALL OF IT). Please let me have The Cure, the band, back. I want to talk about The Cure again and mean music, not overused phrases.

Robert Smith and the gang may not be the cure I need if I get a recurrence, but they are a Cure for the nonsense I can barely tolerate in CancerLand these days.

My t-shirt from when I saw The Cure in concert in 1996
My t-shirt from when I saw The Cure in concert in 1996

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

Cancer Patient or Blender?

Lots of folks are up in arms about the Komen video featuring a woman with Stage IV breast cancer, with all the invoking of the fight and “beat” cancer language and message. I’ve been trying to figure out why I’m not as fussed about it.

When I first started blogging and finding others who expressed the same views I had about cancer (as I’ve said in older posts, I was reeaallly in a cave while in treatment, back in 2010-12), I saw a phrase often invoked that went something like: only the positive stories reach the podium. I think it referred to the fact that all the women asked to speak at those endless walks and races for breast cancer (and other cancers maybe?) were usually early stage, had beaten cancer, and were spreading the message of think positive, early detection, blah blah blah. Therefore, those with Stage 4 were not invited, because of the anticipated unhappy ending in store for the speaker.

I’m not in the position to say if more metastatic patients are being asked to podiums these days. I am vaguely aware of the Today show hoo ha last October. This patient with martial arts in the video, is she the first Stage 4 patient featured in Komen ads? I don’t know. If so, it seems only the stage is what makes this ad any different. It is still the same old message of fight and be positive, because that is the only acceptable way to be a cancer patient. I tend to hate that message regardless of who is saying it, their stage of cancer, and whichever Pink organization is putting it out. I respectfully point out I have the advantage of not being Stage 4, so maybe my view is skewed.

I can’t say I dislike Komen any more than some of the other organizations with their save the ta-tas, be positive to win, and cancer is a sexy party attitudes. I’ve mentioned in previous posts I tend to get blinded and unable to discern one organization that pisses me off from another. Komen is just selling a message as a product: positive patients who are fighting, not giving up, are worthy of your investment dollars. Only the strong survive, or at least get invited to the podium. This martial arts video just seems like more of the same. Therefore the fight/I’m a winner speech was no more and no less annoying to me than any other. I cringe at the fact that I’ve heard that stuff so much I don’t even think of it as original. In my opinion, this is not a new low for Komen—just business as usual.

Perhaps some will think I am being crass to reduce this ad, and by extension the woman in it, to a product worthy of donation dollars. But I remember reading some back and forth in some comments on one of those endless Pinktober articles last year. One woman used the usual “don’t be so ungrateful” line in her comments, and in her argument pointed out that it was the positive messages that put Komen on the map, and got all those dollars that benefit even the Komen critics. Komen needed and still needs positive representatives to get those donations because no one likes a grumpy survivor! I don’t know if this commenter realized how much she was turning patients into objects for sale. No, wait, she was not doing that—the organizations do it. And maybe we patients do it to ourselves?

This is not a new thought to me. I’ve often thought that if I should get a recurrence and need to use some crowdsourcing site to pay for my care, my Curmudgeon shtick would not rake in the donor dollars. I’m too pragmatic with my “hey, the treatment might work, but there is/was always the chance of metastasis, of death.” Like, “hey this blender might work, but it might totally fall apart.” The difference is the blender is cheaper and the buyer can get a warranty and replacement. There are no warranties with treatment, only odds of the treatment working, of survival. Of course, that is the very reason dollars are needed for research—to create those guarantees. (Is that irony? Paging Alanis Morissette!)  But that is a point too hard to sell in a catchy video with t-shirt.

I’ll stop there. I’ve thought about this topic often and have stopped myself every time. I’ve been too chicken to write about this treatment-as-investment concept, and maybe I’ll never address it again. It is repulsive to think of and discuss, although that does not mean it should not be discussed. I’m just not sure I am the person to do it; it requires people with backgrounds in marketing, economics, sociology, etc. I am just a cancer patient who feels like a defective product, since I cannot shill the message the organizations want to sell.

So, to me, the martial arts video is no different than the dancing mastectomy woman, or the celebrity recently throwing a goodbye boobs party. They are doing cancer their way, which is their right, of course. It also happens to be the way the rest of the world wants to see, and to impose on ALL patients. And again, I balk at this persistent, ubiquitous image (I link to my old post about that once again). Meanwhile, I wrestle with my anxiety that should I need crowdsourcing, how do I turn myself into an attractive blender to get those donor dollars?

Heeeere’s Cancer!

I cannot take a break from cancer. It pops up even in my escape plans.

Several weeks ago I wrote a post about watching “60 Minutes” specifically to see Anderson Cooper interview someone much cooler than himself—Dave Grohl. Before the Grohl segment came on, I sat through a segment on embryo manipulation—removing the faulty BRCA mutation to end breast cancer. My little respite from cancer was invaded. Then a few days ago, I tuned into “The Daily Show” to see Grohl discuss his awesome History of American Music Cities again. And whaddya know, before his Royal Grohliness was interviewed, more breast cancer!

It’s not that I disliked the piece mocking the Komen-fracking-pink drill bits, indeed I loved it. I’m just fussing because every time I want to take a break from cancer and indulge in other interests, it pops up.

Grrrr.

I’ve discussed in older posts the concept of “getting over cancer”, how friends and family expect patients to just be “done”, they think that after treatment, things like recurrence, lingering side effects don’t matter. I’ve read many other bloggers discuss this topic. People ask, “aren’t you tired of talking about breast cancer?” Duh, yeah! But not talking about it does nothing to reduce risk for recurrence or a new cancer. Writing about it is the only thing helping me recover emotionally. Furthermore, look how unsuccessful I am when I do try to forget about it. Watching TV, escaping into music or whatever, cancer creeps in. I hardly ever get to the movies anymore, but the one I managed to take in, “Guardians of the Galaxy”, don’t ya know, opens with a scene of the hero as a child, his bald and weak mother in a hospital bed, dying right before the hero is whisked off into space to become this Guardian. I loved the film, but was very upset for those first few minutes.

Take a break from cancer? Yeah, I’d like to. Doubt it will ever happen tho’.

here cancer

Get There Faster!

TV Re-Runs: Part II – “Friends”

A/N: This is the sequel to the previous post and was supposed to appear a couple days ago. But…I got a nasty head cold in between and am still a little out of it. So, that is why it seems late.

Tired of Pink pushers acting out the SNL “Mr. Short-Term Memory” sketch, I change the channel to another TV re-run: the ever popular, always-on show, mammography. What real TV show seems to always be on some channel? “Friends”! Not that there’s anything wrong with that. Yes, I’m referring to another popular syndicated sitcom. I’m happy both are often on, I like them very much. I cannot say the same for the constant mammogram debate always in re-runs.

I always have a difficult time when the mammography and over-diagnosis debate rears its ugly head. I was under-diagnosed. I received a false negative for my very first mammogram at age 38, which I requested because my 48 year old aunt had just been diagnosed. About five weeks later I was falling down the cancer rabbit hole with a 5×6.6 cm tumor. I’m left distrustful and bitter on the subject. I find it difficult to think about.

So when mammography gets discussed on a wide scale as it has been recently, I lose my temper quickly. The same old nuggets pop out: it is not a 100% accurate method of screening, it results in over-diagnosis and over-treatment, it makes no difference in mortality, blah, blah, blah. Then the articles written about a report pick it apart with paragraphs of numbers and what they mean, to show why the report is to be believed…or not. And so readers have to be wary and recognize that all that is written comes with biases, and as one article implied, some minds will never be changed.

source publicsq.tumblr
source publicsq.tumblr

My emotions make me just register white noise, so the science and evidence is difficult for me. It all sounds the same, and I think, wasn’t this just discussed? One recent article I started to read kind of had the same been there, heard that attitude, pointing out this controversy rises every few years. I was thinking it more frequent—like just last summer? But I think that controversy was removing the word carcinoma, reclassifying screening results—those things that may or may not turn into cancer. There is a real problem with over-diagnosis, I get that. I also get that last summer’s fuss was more about semantics and classification. But, mammography (and other screening methods, for other cancers as well) is still to blame in the matter, because that is how the may-or-may-not-be cancer results are discovered. So in my mind it is just part of the same old mammography story.

chandler

This is when I change the TV channel from SNL re-run to a re-run of the sitcom “Friends”. Remember loveable, cute, not-so-smart Joey Tribianni? He was always a few steps behind Chandler, Ross, Rachel, Monica, and Phoebe. Everyone else would “get” a joke or a point, and have to wait for poor old Joey to catch up. Late in the series’ run, there is a great episode in which Chandler and Joey are in the apartment belonging to Monica’s ex, Richard (sadly Tom Selleck is not in this episode). They find tapes, presumably sex tapes, labeled with female names. They find one labeled Monica. Chandler is instantly mortified, but Joey, well, he takes a bit longer to connect the dots. After waiting a beat, Chandler finally yells what viewers had thought for years: “get there faster!”

“Get there faster” is what I want to scream at researchers and reporters regarding this. Or maybe I wanna yell “get there faster” to everyone because I know the people involved in the endless studies done on effectiveness of mammography have nothing to do with other aspects of cancer—like why it happens, what to do about it, how to make not happen at all. As for those mammograms that find things that never turn into cancer? I guess the people crunching the numbers aren’t involved with solving that problem. I’m left thinking no one is even trying to find that solution. I’m sure it is being researched, it’s just the way that tidbit is mentioned as just one or two lines every time I hear this story, I’m starting to wonder why it isn’t THE story. I’ve read of a similar issue in testing for thyroid cancer. Seems to me determining if something is or is not cancer before treating is certainly a “get there faster” kind of problem.

I know how unfair I’m being with my frustration. I know demanding a solution RIGHT NOW is pointless.

Discoveries and breakthroughs don’t just happen on demand, or just because enough money is thrown at the process. I guess I’m just tired of this particular story grabbing headlines every few months or years…I really cannot tell how frequent it is anymore because I’m just so tired of it. Just like some TV re-runs.

I know other work is being done, in fact I recently saw interesting pieces about treating/preventing recurrence in the area of HER2+, very relevant to me. But that was certainly not broadcast in the mainstream media, as was the case with this mammogram study. Mammography always grabs headlines because it is the only thing the general, non-cancer public knows. Guess that is what happens when something is oversold.

And I know researchers work hard, and cannot think about the individual cancer patients, or potential patients, as they execute tests, analyze data, and all that.

But here’s the thing: I am one of those individual patients and as much as I try to see the big picture, some days I can’t. Some days I can only view everything through the lens of my own experience. So here is my view.

It’s true mammography did not work for this patient, diagnosed under the age of 40. It’s true I’m bitter about that. It’s true that this bitterness is a tiny part of my resentment toward the Pink message (but there are soooo many more things wrong with Pink, just dig around this blog). It is true I am NOT on the “a mammogram saved my life” bandwagon. Rather, I tend to snort each time I get a letter of “no cancer present” after my bi-annual scans: “yeah, heard THAT before.” So there is my bias.

But when the number crunchers start talking about how screening just finds disease earlier and does not change how long a person lives, the person is just sick for a longer portion of life, it is hard to hear. Even though it totally makes sense, it just seems such a hopeless statement to me. I don’t know why.

It is hard to hear these reports without a suggestion for a better method to replace mammograms. I know there are other screening methods debated in health media, but are they affordable and covered by insurance, available to even poor women, myself included? Regarding those options, if they are effective that is, I say get there faster.

While the two incidents have nothing to do with each other, it is difficult to put up with yet another onslaught of Pink rah-rah, this time in the form of the Kohl’s & Komen campaign, right after the latest repeat of another mammograms-aren’t-all-that story. Both just remind me that everything still seems to be in the same stagnate place as it has been for years. I had cancer, there is no news telling me of a reduced chance I’ll get it again. All will remain as it was before. I wonder if there even will be any changes in my lifetime. I don’t want to have cancer again. I don’t want to keep having the same Pink conversation over and over. Everything is just too slow. I want to change the channel from the cable networks that just show re-runs in syndication. I want the current season, but it does not exist.

All these years and it all sounds the same. GET THERE FASTER.

Short-Term Memory

TV Re-Runs: Part I – “SNL’s Mr. Short-Term Memory”

I’ve got cancer controversy fatigue.

It is only the beginning of March and already 2014 has had too many breast cancer controversies. The bizarre Keller attacks provided an interesting silver lining in that so many people defended the right of cancer patients to tell whatever blunt truth each deems appropriate to their experience, not just the media approved story, without getting hassled for it. I’d hoped the infuriating Pancreatic Cancer Action PSA controversy would provide another silver lining in the form of a general realization that 1) Pink has deceptively sold breast cancer as a desirable disease 2) patients with other cancers are so tired of the attention given to breast cancer that push back has begun. I still think push back will continue, see here and here, but the jury is still out on that one.

Are the voices challenging Pink Rule getting louder? Maybe, but it is business as usual according to the dominant voices in the breast cancer conversation. The most recent two controversies (is it just 2, did I miss something? I’ve been a little otherwise engaged lately)—the here-we-go-again-arguing-about-the-usefulness-of-mammography fuss, and is-it-October-again-already return of Pink commercialization—are just old and tiresome. They seem like TV re-runs. Or, more accurately, remind me I watch too many TV re-runs.

I’ll get to that mammography thing later, some other post maybe. Right now I just want to rant about the latest Pink hi-jinks.

Remember the iconic recurring sketch on Tom Hanks-hosted Saturday Night Live episodes, back in the late 80s-early 90s, “Mr. Short-Term Memory”? The little song at the start of the sketch said something like: he got hit on the head by a fruit, he shouldn’t have sat under that tree, he’s Mr. Short-Term Memory, he’ll drive you crazy when you talk to him but he’ll never know it, because he cannot remember anything. Hanks as the titular character would repeatedly forget why he was on the game show or why he was in the hospital, right in the middle of a conversation. The other characters had to repeatedly explain the situation to him, resulting in everyone having the same conversation about 5 times, to the exasperation and irritation of the other characters. Meanwhile, Hanks cluelessly acted like each time he heard the repeated story, it was brand new information! I loved that sketch, I still do. The sketch is funny, which is good since SNL is a comedy show.

Komen, Kohl’s, and any other Pink sellers acting like breast cancer is some kind of undiscussed elephant in the room reminds me of Hanks in those old Mr. Short-Term Memory sketches, but it ain’t funny. I picture all the marketing flunkies at both Komen and Kohl’s as Hanks/ Mr. Short-Term Memory, shouting “all these women are getting breast cancer?! Oh my gosh, we need to let people know about this!” It’s as if Komen is inexplicably ignorant of its own history and efforts. This is mind-boggling , until I consider the alternative. Maybe the flunkies think we, the shopping public, are plagued with short-term memory, and we forgot that barrage that just happened a few months ago. Impossible! Pink ribboned items hang around in my local stores up until at least the holidays, or after!

color pink

What the hell is talked about so much that folks with other cancers applaud that recent pancreatic cancer PSA, because they are so sick of pink ribbons being waved in faces (yes, that is an actual comment, scroll down to Martin, here)? As recently as a few months ago I was complaining about how so many folks—in real life, in comments sections, on social media—like to point out that 30 years ago breast cancer was only whispered about, and now…isn’t it great? Komen and other Pinked out groups have made it so we can talk openly about it! As if this is some kind of triumph! As if being able to talk openly about it was the end goal all along. Sometimes when people claim that all the talk of breast cancer shows how effective Pink has been, I have to shove my hands in my jeans pockets so I don’t grab their shoulders and shake them and scream: “don’t you get it?! I don’t want to TALK about breast cancer—I want to makes sure it doesn’t come back in me—I want to have never had it at all!”

But I did get breast cancer, and I’m stuck repeating myself (I’ve noticed I keep re-posting old posts lately, geez, I guess I’m not just watching re-runs on TV, I’m putting out my own re-runs!). I feel stuck listening to the same conversation over and over, because the biggest Pink gorillas cannot seem to move forward. Komen & Kohl’s awful Pink website page filled with conversations starters are just the same old warmed over topics that’ve been discussed to death. No mention of Stage IV, the misguided idea that cancer is beatable with no mention that it is so likely to recur (as Stage IV, again ignoring that reality, duh), and of course, other pretty pink-i-tudes, like the notion cancer is a gift, something desirable (gee, no wonder those silly pancreatic cancer patients got confused—YES I’M BEING SARCASTIC). There is even the chance to win $50 from Kohl’s by sharing a personal breast cancer story. Even this idea is old news—it is just another version of the “only the positive stories get to the podium” phenomena so ever present in cancer tales. (Because a Cancer Curmudgeon-y story is unlikely to get a podium or prize.)This really burns me up, but I have to submerge that anger for some other day.

Using these proffered conversation starters that have already been discussed into the ground will just make the conversation about breast cancer look as silly as Mr. Short-Term Memory’s rants. Coming so soon after the pancreatic cancer PSA fuss, a marketing campaign that encourages folks to talk about breast cancer like such a conversation has never happened before is beyond tone deaf. I realize that this campaign is the result of too much time and money to simply cancel it after the pancreatic cancer PSA, but if Komen and Pink pushers had been paying attention to the growing grumbles in social media and even the mainstream (I guess that Orenstein article was just TL;DR for those involved with this campaign), maybe they’d have thought twice before developing this travesty.

So many have already eloquently spoken about the Komen & Kohl’s theft of elephant concept from METAvivor there is nothing to add. I was outraged at first, but now I step back and find I’m not even all that surprised. Pink pushers are so unable to move forward in the conversation regarding breast cancer, of course they are out of new ideas. Realizing this, I think to myself, is it any wonder they had to steal? Last I checked, METAvivor is still disappointed that K&K are Unwilling to Do the Right Thing. Too many resources stand to be wasted pursing legal action, but given Komen’s litigious history, perhaps “lawsuit” is the only language they speak?

I’m not suggesting that all the #talkpink turn into #STFU. It’s just that breast cancer is still such a huge problem that has not decreased in proportion with nearly 30 years of “talk”. Nothing has improved in terms of death, of mets patients. Doesn’t that seem like a conversational shift is needed? I’m not as specifically anti-Komen as some folks. Rather, I tend to get so incensed by nearly all Pink/rah-rah entities, or hell, ribbon and disease-of-the-month culture as a whole, that I sometimes cannot discern the individual pieces of the puzzle. Then my knee-jerk reaction is: “it all sucks!” But Komen really is The Worst this time round.

I think Kohl’s reached their goal—sorry, I cannot linger on that site enough to even understand how the shopping/donation process works, I was just too grossed out. I have not shopped there in years—as a pet/house sitter, I simply do not require their goods. So it was easy for me to boycott, and because it was so easy, I feel strange or hypocritical suggesting others boycott. I’d like to NEVER buy anything with a ribbon on it but it is damn near impossible in the case of some foods I like. I wonder if the backlash directed at K&K is enough to alter the next big Pink selling bonanza surely in the works? How many serious missteps like this will it take to end Komen? Part of me wishes someone would take them aside and clue them in, and that they’ll listen—simply because it is so hard to watch Komen embarrass themselves even though I cannot stand them. But the imp in me says, “hey, give ‘em enough rope….”

I wish I knew a solution to the over-abundance of Pink and all that comes with it. I only know I can no longer watch all these Pink re-enactments of the “Mr. Short-Term Memory” sketch.