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

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

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

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

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

But I don’t want to get into that.

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

Or maybe the universe was just giving me the finger.

Some Word Problems

I was fairly lucky this Pink season to not be too irritated by all the Pink products and events. Sure I ranted here about one particular subset of events, but mostly I’ve been successful at just turning the page, clicking away, changing the channel. But I’m a Cancer Curmudgeon, so of course I’ve found something else to be annoyed about.

What has been plucking my nerves over the last few weeks is the repeated use of certain words and phrases. One certain word, when attached to other words, has been especially upsetting to me pretty much all year. That word warrants its own special, lengthy, likely unpopular post. Hopefully I’ll get around to it soon—time and energy have not been my friends of late.

So here are some words/phrases that made me weary last month:

Awareness

Well, duh.

Many bloggers have written excellent pieces on the need for education rather than awareness, that full awareness has been reached when the NFL wears Pink, and so on. I agree, and have little to add. The word is meaningless to me.

I guess I especially hate the word awareness when it is used in arguments against critics of Pink—hey, don’t criticize pink ribbons because: look how successful, we can talk about breast cancer without shame! I’ve said this before: I don’t wanna talk about it; I WANT TO NOT HAVE IT.

What is the goal of awareness anyway? From what I absorbed from Pink propaganda prior to diagnosis, it seems to be that one simple message: get a mammogram to detect cancer early, fight hard and put on a smile and the pink uniform, and then survivor status is achieved, and it is all over—all is well. My experience—being 1 in 233, not 1 in 8 because I was 39 years old, being ER/PR negative and HER2 positive, having a false negative mammogram, now knowing the likelihood of recurrence—just did not fit into the story. I felt, and still feel, I was spectacularly unprepared.

Hindsight being what it is, I certainly wish I’d known then…ah, you know. It would’ve made the frenzied time of diagnosis a little less confusing, trying to learn so much backstory, UNLEARNING the messages I’d swallowed each October. Plus, I don’t think I’m alone in thinking that the early-detection-is-the-best-shot-for-survival is not good enough. I want better odds for not getting cancer again, even after that magical 5 years out number. I want prevention for everyone. Need I say more? For all the hoopla of awareness, I still see breast cancer as pretty grim (duh, I’m a curmudgeon after all).

The whole story is not being told by the mainstream Pink information distributors. I admit, before I got cancer, I did not “buy it”, but I certainly did not do anything to find out what was not being told. I’m not sure most people are able to understand all the little details about breast cancer—people like sound bites and the whole story of cancer is too complex for quips. And certainly many are unwilling to know that breast cancer is anything but the festive version as seen on TV (eat right, exercise, blah blah blah to help prevent it, curable and never the metastatic kind that leads to death, and chemo is a party). But good grief, even if all the little details don’t fit into a perky slogan, don’t pretend that breast cancer is just a singular disease with a happy ending. The story that folks think they know because of awareness is not my story, and I get tired of trying to explain it: yes I had a mammogram, it failed; I kept going for infusions after chemo because I had a weird type of cancer so I needed a drug called Herceptin; no I don’t need Tamoxifen; and no I’m not all done, I still see the oncologist because it might come back. (Note—I don’t think HER2 positive cancer is weird, but explaining to the uneducated, even other breast cancer patients, well, it might as well have been weird.)

My story, and many stories, cannot be distilled into a slogan. Slogans will never go away, I get that. But how about just a little asterisk next to the slogans: “not applicable to all breast cancer scenarios”. Is that so wrong? Don’t ignore the complexity!

Show Support/Support Awareness/Support Breast Cancer

Another set of meaningless terms.

What does it even mean, to support Breast Cancer Awareness? Like, “oh yeah, telling people about breast cancer, that’s good, I support doing that?” And clearly people do not even know that what is being told about cancer is not the whole truth (see section above).

I KNOW many have complained about that stupid question asked by cashiers at various check-out lines: “would you like to donate to support breast cancer?” I try not to judge cashiers too harshly; I’ve worked retail, I know what it is like to repeat the same question over and over. It gets so monotonous, of course the words get shortened—but this is a time when words matter greatly. I cringe when asked if I’d like to support breast cancer. And in the case of the stupid No Bra Day graphic a few years ago, the one with the woman raising her black bra above her head and the slogan on the bottom “support breast cancer”, I just have one word: unforgivable.

I’m afraid to take on the “show support” issue in this post; I want to concentrate on words that annoy me. The need to not merely support a cause, but to SHOW off that support, makes me uncomfortable. A life working in the service industry and a non-profit managing volunteers, has made me a bit jaded. So I’ll tackle this subject another day—maybe. I know it is a touchy subject. For now, I suggest checking out an interview Gayle Sulik participated in earlier this year about the Boston Strong branding. The transcript puts into words some of my thoughts that I’ve had, long before getting breast cancer. Those folks who were interviewed pissed off many listeners, I’m sure.

Instead of “showing support” for “awareness”, may I suggest just supporting actual patients? Donating directly to reputable organizations like Metavivor? Or just helping out the nearest cancer patient with the everyday tasks that can be so overwhelming during treatment?

Every Single Slang Term for Breasts, Especially Boobies

Look, I read lots of bloggers who use the word boobs in the blog name, a Twitter name, or a tag line on the blog, FB page, whatever. I get that “boobs” is a recognized word, not really offensive to most. Hey to each their own. I’m not offended exactly by that word or the others, but I’m not a fan. I had breast cancer. Not titty cancer. My ta-tas were not saved. I saw my cancer; I did not find it by feeling my boobies.

More than I want to, I see founders of the organizations with names that include these slang terms hotly defending their organization names and mission statements. I understand that the intention is to raise funds that help patients, that a kicky, fun name is meant to attract younger, or male, attention—although the names imply that ta tas are the only thing meant to be saved (not lives). I understand that feeling boobies is meant not to support SBE but to encourage familiarity with one’s own body, so changes that might indicate disease will be noted sooner. Hearts are in the right places, but I still don’t like the names and slogans. I cannot quantify my dislike. There are many more talented bloggers and journalists who can explain the harm that results from the sexism, the sexualization. I agree, and cannot add to all that has been said before.

All I can say is—I don’t like the slang slogans and organization names, and I don’t have to like them.

Yes, many, MANY times it has been pointed out to me that the sexualization I loathe has benefited me. Even those “tasteful”, professional corporate ads featuring beautiful actresses and models naked with their strategically placed arms garnered donations that went into the development of Herceptin, which might help me live a long time. Someday, I will write a post about how I try to reconcile this in my mind: being grateful for benefits I’ve received from the way breast cancer has been sold with sex. Some interesting incidents this recent Pinktober have made me think hard about this quandary.

I can be called ungrateful, whiny, prudish—maybe it’s true, but it is not how I view myself. I just think of myself as a patient who wants to be treated with dignity. The slang words and the way they are used in Pinktober events just don’t seem like breast cancer is taken seriously anymore. There are millions of examples out there described by bloggers sick of the sexualization. The worst I personally witnessed this year? Oh just a little “walk” in April. Pictures taken at the event I stumbled over on Facebook featured women wearing hot pink bras and panties pulled over their athletic apparel. It reminded me of a bachelorette party, not in a good way. Hmph, breast cancer fundraisers as bachelorette parties…I hope some smart blogger with education about feminist issues can explore that. Do women have so few opportunities to “party” and let off steam that breast cancer parties are now our “thing”, like bachelor parties or tailgating? I mean, it seems like this to me, but maybe I’m the only one.

I’m not suggesting anyone stop using the slang for breasts, it is an accepted form of vernacular, fine, it is my problem to get over. I have no alternatives  that will be as successful as using sex to sell a disease, and like I said, I’ll confront the issue later. I’m just a little tired now, at the close of Pinktober.

OK I’ve rambled on too long about words that irk me, so I better end it now before I find more!

TV Invaded My Escape Plan

My secret to getting away from Pinktober madness is music, of course. The Rock and Roll Hall of Fame nominations come out each October and I’m usually able to use those as a nice distraction. This year, there is the added bonus of the “Foo Fighters Sonic Highways” documentary series on HBO. I thank my lucky stars for Dave Grohl.

The series (and creator) was featured on Sunday’s “60 Minutes”, a show I generally do not watch. While waiting for the Grohl-interviewed-by-Cooper segment, I endured a piece about genetically manipulating embryos, in order to have a baby that does not have any faulty, disease-causing genes.

I’m not going to go into the “playing god” aspect, I’ll leave that to internet comments: “if your mother had done that, you would not have been born” arguments that rage around this topic. Not having ever desired kids, I’m a bit dim on this subject. But the woman featured in the segment decided to take this path after getting breast cancer at age 29, and yes she has the BRCA mutation. Of course that gene is one she sought to eradicate. The interviewer asked her if her goal was, “breast cancer ends with me” and the woman said “yes”.

Look, I understand that BRCA is a big issue in breast cancer discussions. But it is possible to get breast cancer without being BRCA positive—I’m one such patient. In fact, from my rather weak grasp of breast cancer science, it is my understanding that BRCA is not present in most breast cancer patients. So how can this woman be so certain that she has eliminated the chances of her progeny ever getting breast cancer? Not sure breast cancer has ended with her for her descendants.

Perhaps I am wrong to be annoyed, to think that this is irresponsible journalism? Generally, I do not watch these types of magazine TV shows. While I gather that something like “60 Minutes” is a bit more reputable than the morning entertainment & lies shows, I still do not think they are a reliable source of medical info. Sadly, most of the public think things like “60 Minutes” are perfectly reliable. Did the show spread more misinformation (I am vaguely aware there was a false reporting or something scandal with them earlier this year)?

I am so tired of these sort of “winning the fight against breast cancer, kicked cancer’s ass” type of statements: breast cancer ends with me. Do we really have as much control as we’d like to think?

Argh—I just wanted to watch something about one of my favorite bands, about a cool project that has kept me entertained, educated, and distracted this Pink season. Can I not get one moment’s respite from breast cancer bullshit?

Random Thoughts on Baring the Scars

I’ve been brooding on this topic for many months, just have not had time or energy to reach conclusions so I can write about it. The issue of whether or not those of us with scars from breast surgery should post photos of said scars on the internet pops up from time to time. Sometimes it is in the form of Facebook users objecting to the pics, or there is discussion about the “arty-farty” photo exhibits of women baring their chests or whole bodies after mastectomy—and whether this is a whole new level of objectifying “boobies”.

I’ve been contemplating and re-evaluating my decision to post my own picture recently, in light of all this discussion. I’ve wondered if I’ve objectified myself—certainly some of the comments I’ve received have been strange, but mostly I ignore it.

I’m still not prepared today to delve into my thoughts and feelings surrounding the objectification, the idea that this rash of photos of women baring their scarred breasts may be supplanting the image I hate: the bald, smiling, pink feather boa-wearing warrior woman—and I indict myself for my contribution to that. I’m still sorting out my thoughts and feelings on it.

But I was pulled into mulling it over today when I saw some disturbing comments on I Had Cancer’s Facebook posting of Stupid Dumb Breast Cancer’s photo of her bare chest, her scars. Most of the comments run the usual way—you go girl, badass, warrior, strong, beautiful, all that. But every so often one of those upsetting (to me) comments popped up. Someone said it was sad, a few others—weird. And the worst: a suggestion the image would scare women out of getting mammograms.

I strive to be compassionate, to have empathy, to always try to see things from others’ point of view. But this is one area in which I utterly fail in understanding another POV. These scars some of us chose to show—this is what happened to us, and what happens, and will happen to many, many women. It is a result of having breast cancer. Denying it, or wanting it to go away, just seems insane to me. Not looking at these images, wishing them away, will not stop the march of breast cancer, and the results of treatment.

I’ve mentioned in MANY posts my dislike of the warrior/battle language in cancer. I cannot help but notice the irony that for all the battle language that exists, I don’t think people actually know what it means. If a person has to “battle” cancer, a person must understand all the outcomes, the casualties, if you will. Does a general devise a battle plan without knowing and understanding the terrain and landscape into which soldiers are being sent? No, all possible aspects are considered: landscapes, dangers, projected life loss, captures…and I don’t know what all, I’ve never been a soldier. So why not know what is involved in the “battle” of breast cancer? I get that not everyone objecting to the pictures engages in warrior language, but I’ve seen a few comments from self-proclaimed warriors who do not seem to want to know anything other than happy, perky, pinky, positive stuff, because the “downer” facts make the battle harder. I just cannot understand this. That will always be a failing of mine, and I am sorry for my lack of empathy here. But I just will never be able to understand that mindset.

When I faced my surgery, I was still an internet idiot about social media in regards to cancer communities (I used the internet for work and hated using the computer in what little downtime I had, so no blogging back then). I only saw a few medical, informational pictures of what my result might look like. I had to deal with the emotional fall out on my own. I had no examples of the sort of “realness” Ann Marie’s photo, or my photo, provide. When I decided to get a decorative tattoo, rather than a reconstructed nipple with tattoo coloring, I had no idea there was this whole movement, like P.Ink, that did that kind of thing. I discovered it as I began researching ideas for my own tattoo.

And I felt so MUCH better once I found these websites, social media outlets, these pictures of reality.

While I still grapple with the objectification issue, the idea that topless scar pictures are being absorbed and used in the Pink propaganda, I cling to the notion—for now—that all these pictures are good. People who don’t want to see what happens to a breast when it gets cancer, well, look away. Keep your heads in the sand, that won’t change the reality of what really happens to breasts when a person gets breast cancer. My picture remains here for now, for the woman who is going through what I went through then—who needs an idea, an example of what her reality will be.

This post is where I am on this subject today. I will revisit it again, later.

This is not sexy. This is an example of what breast cancer can do.
This is not sexy. This is an example of what breast cancer can do.
This is what I can do, fuck cancer.
This is what I can do, fuck cancer.

F*ck No Bra Day

Here’s your breast cancer awareness:

This is what I can do, fuck cancer.
This is what I can do, fuck cancer.

What cancer really does to breasts, read this.

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. 

Please Tell Me That No Bra Day Thing Is NOT Happening Again This Year

Wrote this about it last year. Still feel the same.

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

Posted on October 13, 2013 by Cancer Curmudgeon

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
Source: etsy

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

Note to Self

“You’re still going to get criticized, so you might as well do whatever the fuck you want.”— Kathleen Hanna

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

Blinding Light

The lively conversations surrounding celebrities and their publicized breast cancer experiences have been fascinating—yes, I’m obviously talking about the Robach and Lunden double feature of recent months. I am working on a post about it, if I can get some time to finish, that will be amazing.

But one aspect that greatly disturbs me I have actually dealt with before. I keep reading comments praising the women, for “shining a light on breast cancer”, that “any” attention on breast cancer is good and needed.

bulb

Yes, yes, I know I benefited from drugs that were probably only developed because of this attention.  I know I, and many women, have benefited (don’t think the men with breast cancer have gained much from all that Pink, but that is another story). But I think a backlash is coming. All the lights shining on breast cancer, from celebrities and corporations and everything, is starting to blind and irritate everyone else.

I think it is time to acknowledge that not only has Pink bullied every other cause, but that folks with other cancers are getting mighty tired of all the attention. I wrote this post last year, BEFORE that Pancreatic Cancer commercial in the UK put a spotlight on breast cancer in a different, quite unflattering way.

Yes, so many have benefited from Pink. At some point I suspect the winds will change, and we will ALL suffer from a backlash—those who embrace Pink and those who loathe it like your Cancer Curmudgeon. The kerfuffle around that pancreatic cancer PSA is probably just the beginning.

What Do You Mean There Are OTHER Kinds of Cancer Besides Breast Cancer?!

Posted on October 31, 2013 by Cancer Curmudgeon

Or: Shoving Pink Down Your Throat

Yes that title is sarcastic. Continue reading “Blinding Light”