To Educate This October

Most of us acknowledge “awareness” has been achieved, it is time for education. There are so many myths out there about breast cancer to be busted! Like how 1 in 8 is lifetime risk, not the risk a random 40 year old (non-BRCA) woman has. That’s just one of those fuzzy slogans that needs to be cleared up. What are some others? I’m not good with stats and numbers–but so many of you are–help me!

This anotheronewiththecancer blog of mine has been like a 4 years long gripe. I complain a lot, I know. And anyone would be right to ask me what I plan to do instead of just bitching. How can anyone expect people to know what it’s REALLY like to have breast cancer unless we tell people? How can people know that getting reconstruction is not a simple,”boob job” unless we explain how it’s different? How can people know how much we fear recurrence and that can happen even after that magical, mythical 5 year mark? How can people know that completing treatment doesn’t equal being “all done”, that in fact, my oncologist’s phone number will be in my contact list for a whole ten years? For that matter how can people understand that for metastatic patients treatment NEVER ends, until death? (Check out the Laurie Becklund video and my post about these issues in The Next Time Round.)

back-to-school

On October 1st, please join us in educating, in setting the record straight, in injecting some reality into the perky Pink slogans that will saturate all media and even our in real life experiences for 31 days. Use #BreastCancerRealityCheck and tell people all kinds of things that you wish they knew! We’d especially like this to get trending on Twitter–so, tweet, tweet, tweet!

I for one, and I suspect many of you who read my blog, am just so tired of all slogans. I’m compiling a list of things I want people to know. All under 140 characters, which if you’ve read my long-winded blog posts over the years, you know how tough it is for me!

We so often say it is time for education, the time for awareness is over. So, in the spirit of Fall, let’s take the public back to school.

Advertisements

Turning My Stomach

I know what you’re thinking: you see a picture of Joan Lunden in a post and think this is another celeb-with-cancer bashing piece. Not exactly. I’m certainly no fan of Lunden or any of these celebs sharing their “inspirational stories”–and in my opinion Lunden IS one of the worst of them. But this picture is only partly her fault. Let me explain.

You see, this is an ad for People magazine. That issue of the magazine, that cover, is old. Yet the ad containing the cover picture, with the little items around the magazine cover, yeah, it’s new. I tore it out of my most recent issue of Entertainment Weekly. I’ve been seeing the ad in a few other magazines this weekend–I was, um, sifting through a huge backlog of magazines to clear some out. Yes, I still read actual magazines, sometimes for recipes (glossy, colorful pictures motivate me better). And man, I’ve been behind in reading-‘n’-recipe-reviewing, so this weekend was all about reducing my backlog!

OK defensive digression over.

Are these items holy relics or something?
Are these items holy relics or something?

So in short, I saw this ad a few times and as I reached the last magazine in my pile I yanked out this page and took a good long look at it. As I did so, I understood why it turned my stomach more than the usual celebs-with-cancer stuff I see. Have you seen this ad? Have you really looked at it, thought about it? (I kinda hope you have seen this ad, since I am no picture/computer wiz–and this scanned copy of the ad is not very clear and probably too small, but if you click it, it should get bigger.)

The ad, which IS for People, chose this older issue to tug at heartstrings, to sell magazines (yes everyone seems to use certain kinds of cancer patients to sell product). People magazine is touting their attention to the details as one reason they are so good at telling stories about people worth being in their magazine (that last part about worth is questionable, but I’m going with it for now). Continue reading “Turning My Stomach”

Rare Curmudgeonly Cheer

I am prone to shouting “this is why I love the Internet” when I see dumb stuff that makes me laugh. The meme with Joaquin Phoenix’s head progressing toward the east coast to represent the hurricane threat. A video of a bird throwing cups all over the place. Cat videos. Cat videos. Cat videos.

Oh I know, ire in comments and on Twitter, idiots sharing misinformation (“I’ll be right with you, someone on the Internet is wrong”—I love that cartoon), outrage at the slightest infraction, yeah the internet can be an ugly place.

But on the other hand, the Internet kind of saved me when I was in my white-hot-anger-at-Pink phase that October after treatment. Via blogging, and eventually other forms of social media, I learned I was not alone in my loathing of Pink—the rah, rah, the sexualization. Granted, I’m not as active as most, don’t have a huge follower base or whatever, but what little interacting I’ve done has been a comfort.

True, I’m a Curmudgeon, not particularly social, not as involved in the “community”—just my natural shyness and solitary tendencies (it’s an only child thing) at work. But, I know the community is there, and I am in it a bit. And I know there are thousands of patients who share my views and feelings. Knowing about those thousands became very important today.

I was in a conversation with a woman I run into often in my line of work—not a client, but another who provides services for my client. She is a very forward person—if she thinks it, she says it, regardless of tact. I am generally polite with most everyone, and try to keep my conversations about innocuous topics (“how about this weather?”). I tend to steer away deep discussions with people I do not know very well.

Today she brought up some NPR broadcast about how some cancer patients don’t like certain words—survivor and war were the ones she seemed to have latched onto—and how new words have been invented by patients. I think I’ve heard the broadcast she was talking about, but maybe not. Didn’t matter; I know this topic well!

She point blank asked me what I thought of these words. I calmly said I agree; I dislike most of the language in cancer. Of course, it is hard for me to not get very “deep” when discussing this topic and I found myself saying how much I hate things like “save the ta-tas”.

She said something like, “well, I think that is just how YOU perceive that phrase, that is not how—“

And I cut her off right there. I did so with great conviction.

I pointed out that yes, the intent behind that phrase is a clever, attention-getting ploy to “raise awareness”, but I am FAR from the ONLY person who dislikes the phrase. Not, by a long shot, the ONLY one who realizes that getting breast cancer often results in the amputation or mutilation of breasts—and how a slogan like “save the ta-tas” seems like it yanks support from the ta-ta-less, that it should be save the lives. No, there are thousands of us I told her. Maybe millions, tired and fed up with all the pink, with the baggage of October, of all cancer issues. I stated it as fact. It is not hard to find this anywhere on the Internet, voices raised in criticism of all the pink nonsense.

She quickly changed her tune, and pointed out that it should be about “saving the lives”. From there we progressed to a quick, but lively discussion about cancer, AIDS, patient blame.

Our conversation ended well—and perhaps I opened her eyes. Maybe not.

But for me the point was having that conviction. I KNOW there are soooooo many of us out there, loathing that old cancer-is-pretty-and-sexy thing.

No, it is NOT just how I perceive it.

Standing there holding my smart phone, I could’ve pulled up MANY articles that would prove that nope, it ain’t just me and how I perceive it.

As I tend to be less motivated to write blog posts for a number of reasons, I try to remember that every single criticizing post about all this pink crap—even if mine are on page 100 of a Google search for this stuff—are out there. The sheer number proves that NO, it isn’t just how I, or you, or anyone new to this breast cancer mess who just hates it, perceives it. When the newly diagnosed and disgusted are told, “that’s just how you perceive it, that silly slogan is harmless”—she can whip out her device and point out to all the ones who perceive it exactly the same way, and the ones who can explain why the slogan is far from harmless.

This is why I love the Internet.

(OK, OK, this post wasn’t exactly cheer, sunshine, and rainbows, but it is about as syrupy and cheery as I get. Next up, back to my regularly scheduled curmudgeon-ing.)

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

Burden of Gratitude

Long before I got cancer, I worked with a woman really into positive energy, healthy eating, and so on. She and I, along with other co-workers, started reading “Simple Abundance”. One daily task suggested by the book was to make a list of 5 or10 things one is grateful for. I found this very easy—I still do it in a limited way. Not a day goes by that I do not think of at least one thing for which I’m grateful, unconsciously, for half a second. It’s just habit.

Shocking, coming from a self-professed Cancer Curmudgeon, I know. But it IS true, I am able to do those cliché things each day—stop and smell roses, focus and be present for a few moments—all that crap. It just so happens my being in the present moment tends to have loud guitar soundtrack, which I’m sure is not what most would consider a peaceful moment—but hey, it works for me. That is a post for another time. The point is, as much so-called negative energy I send out via this blog (I don’t think I do, I’ve merely been accused of this), I’m much more balanced than I seem.

As I’ve said MANY times in various posts, including my About section, I AM grateful to be alive, for the treatment that stopped my cancer, for having an easier time of it than so many I seem to know, to still be in the 70% that has not yet had a metastatic recurrence. See what I did there? Put a positive spin on a terrible stat; see I can do it too!

I am even begrudgingly grateful for all the Pink cult mess that made the research and development for Herceptin possible. I’m all too AWARE (I hate that word) that having the “popular” cancer, the better funded cancer, improves my survival odds.

And there it is: this is where gratitude begins to feel like a burden.

I’ve had a few lightning bolt moments of being struck by this feeling of gratitude as burden over the past few years since I started this blog. I remember watching Lisa Bonchek Adams, Gayle Sulik, and Dr. Love on Al Jazeera a couple of years ago, and seeing the few tweets popping up along the bottom of the screen about the oversaturation of Pink. A few tweets seemed fed up with the ribbon on everything, but the ones that bothered me were the tweets that spoke of the success of the ribbons (a show discussing them is proof of their effectiveness!). The implied message was, don’t knock the ribbon, it worked because now we are aware and anything that brings more awareness is therefore good. There was also the misguided belief that Pink on everything has solely been responsible for breast cancer patients not having to suffer in silence anymore (see Breast Cancer Action’s history lesson).

I get lightning bolt moments of the burden anytime I scroll through comments on ANY criticism of Pink crap and/or sexy awareness ads. It is inevitable that at least one person will angrily comment about the lack of gratitude the breast cancer patient writer is expressing in the critique. The appearance of such a comment is more predictable than the best weather/economy/whatever forecast. And I’m not even going to go into some of the blog posts and articles that have appeared tsk-tsk-ing those of us who criticize Pink. I guess it is just a backlash to the backlash. Again, there is the message, said directly or implied, that anything that brings awareness is inherently good.

(Gonna pause right here and say awareness is not enough, I don’t want to go into that issue here, many others have, and I said my piece about it in Some Word Problems last year.)

But a really major lightning bolt moment is an article in an Australian publication from about a year ago, that I can no longer access, but I’d made notes to myself on it in an earlier draft of this post. The article was about the competition for funding and attention between the different cancers, and how breast cancer gets the most money BY FAR, although it was not nearly as lethal as other cancers. A woman interviewed worked for a breast cancer charity and recounted a story about an interaction she had with some big executive. He told her point blank that his business partnered with her organization because of the body part. He said something kind of crass, like if his wife got breast cancer it would be really hitting where he lives (sorry, cannot remember exact quote, just remember the “where he lives” part).

How many other partnerships were forged for the same reason? Probably more than I want to know.

Yes, I know I’ve benefited, directly and indirectly, from money funneled into breast cancer organizations because of this mentality. Whether it was an executive motivated by selfishness (I am GRATEFUL I am NOT his wife), or one of the local boobs and brews events, I’ve had the best/latest treatment, and received some useful care packages bought with funds raised by things like this. I repeat I AM GRATEFUL for all of this.

But how do I reconcile my gratitude for my benefits with my disgust with the methods used to buy them?

As I’ve mentioned in other posts, sometimes my blog is just me trying to work through my thoughts and emotions about cancer. I have not been able to work through this. I cannot reconcile my gratitude with disgust. The only way I’m dealing with it right now is by knowing that I am capable of experiencing numerous contrasting feelings at once.

When I started writing this post, I wondered if anyone else found gratitude to be a burden. I mindlessly Googled around one afternoon. I ran into the usual stuff—blogs from the self-help set, a quote or two from a historic figure. I stumbled on a HuffPo piece from a literature lecturer about gratitude being used almost as a weapon of sorts in some Austen novels. This analysis of a couple of novels actually made sense to me, in a VERY loose way. I don’t think the “you complaining breast cancer patients should just be grateful” finger-waggers are exactly viewing us as inferior, lower-class people (such as in the Austen stories, where the poor, unmarried girl has to benefit from the charity of society people to catch a husband and the stability of marriage).

But there IS a whiff of superiority in the attitudes and tones in these comments. Sometimes I get the impression the obligation of gratitude is being wielded like a ruler in the hands of an old timey teacher. And that ruler is being used to thwack the fingers of naughty breast cancer patients daring to challenge the status quo. And I don’t mean just patients who are blogging and writing articles. I mean anyone who has ever dared to grumble quietly among friends and family, and received that rebuke of ” be grateful” in return.

Perhaps it’s all in my mind. It does seem linked to the subtle, indirect blame ALL cancer patients get. Like: “you didn’t eat right/live healthy/think about sunbeams all day, so now you have cancer and you should just be grateful some smart people invented treatments no matter how those treatments were developed and you have no right to complain about anything because at least you are alive for one more day, and that should be good enough for you.” (Not going down the blame road today, either—see my old post Did You?)

The feeling of gratitude should NOT be a burden; that’s not what all the self-help mumbo jumbo is about. Gratitude is supposed to help one on the path to happiness. Well, that’s not happening here for me. What should I do about that? I mean, besides trying to work it out here on this blog?

I still do not really know. But I do know this: I felt increasingly disturbed by the Pink (by that I mean the be a happy warrior rah rah stuff, the sexualization, the pinkwashing, all of it) as I began treatment and hit a zenith right after treatment ended. I felt this disturbance before I ever found others with the same thoughts via social media. Every single day tons of women get this diagnosis. Some of them will go all in to embrace the Pink. But MANY others will have an experience similar to mine.

I don’t want my experience for these future breast cancer patients. Just because it “worked so far” (again, that is debatable, since, you know, there is still all this cancer out here), does NOT mean it will continue to work. Some would say, if it ain’t broke don’t fix it.

But guess what? It is broken. When gratitude makes me feel like shit, something is definitely broken.

April Is October Part 2

Ugh, April—and May a little bit too—resembles October in my area. Like, spring is here, time to run and walk in a marathon and let’s do it for breast cancer and wear lots of pink while doing it. I just ran across a notification that the annual walk at one of the beach towns in my area is to commence in an hour or so. There is another walk in another beach town next Sunday.

I was very upset last year after the walk that is to take place today happened and the pictures popped up on a friend’s page. Interestingly, this particular walk does NOT benefit Komen, but rather a local breast cancer organization and the money stays in the state to help local women. While I applaud that, it does not stop the organization and the walk from draping itself in Pink and feather boas and looking like a big party. The pictures that upset me so much last year showed a woman in her athletic walking gear, wearing hot pink bras and panties over the gear, with dollar bills stuffed in the waistband of the panties and in the bra cups, stripper style. I guess it was all in the name of fun, but I was disgusted anyway. To me is was just another example of how breast cancer is sexy fun times to so many, even women that I suspect are usually much more rational and likely even old-school feminists (I slightly knew one of the subjects in the photos, one NOT wearing the awful attire). I wanted to rant about it back then, but I was far too angry. I mentioned it in a general rant last October. I casually mentioned how it looked like a sick bachelorette party, and I still think that way.

I notice this year the event has added a subtitle to its name: “a fun event for a serious cause”. I find this interesting. I’ve noticed a shift in discussions/comments on social media, and in even professional articles in regular news publications. There is a bit of defensiveness, and I’m seeing phrases like: “I don’t hate pink” or “it’s not popular, but I like boas….” or things of that nature. It has begun to cross my mind that all the bloggers and/or advocates criticizing Pink and the party atmosphere actually had an impact. Perhaps the average person is starting to understand that those of us who’ve pointed out that chemo and disfiguring surgeries are no party are tired of seeing our ongoing awful experience glamorized.

I know I cannot hide—I will see many ads for the upcoming race (which IS an official Komen event). I hope I do not see the same nonsense that happened last year as a repeat on my feed. I get it, people want to have a good time, and just because I’m offended does not make me right. Maybe the women behaving this way even “get” the gravity of breast cancer—hell, they may be patients their own selves. I’m being judgmental, I know. It’s just that I know that when the average person sees pictures of breast cancer as sexy fun times, they will look at me and others who share my point of view and wonder why we’re not having a sexy fun time with our cancer too.

I am looking forward to June.

Uniform

Once upon a time, while walking a dog, I ran into an acquaintance and he introduced me to his wife. During the chat, it came up that I was a “survivor.” No lie, her immediate response was, “but you aren’t wearing your pink!” Actual quote—those words are seared into my brain.

I swallowed my irritation and said something inoffensive about how Pink does not really represent breast cancer in my opinion.

We left it at that. These are acquaintances after all, the kind of people to have polite, how-about-this-crazy-weather kinds of chats with; it can be hard to have deep conversations as a dog walker while trying to control barking, pulling, wriggling pets on a leash. I do not think my words about my disdain for Pink went far. I went on with daily tasks, and the incident haunted me the rest of the day, hell, it haunts me now. It was a one-two kick in the gut, that reaction, that statement. First (BAM!), the assumption that I had that particular cancer, and second (POW!), the assumption that as a result of having that cancer, I am obligated to don the Pink uniform.

Is it any wonder folks with other kinds of cancer, especially gynecological cancers, are so sick of breast cancer? I stood there, my female-with-cancer self, so within a split second the assumption was made I had breast cancer, because of the loud messages of Pink that breast cancer is the only one worth paying any mind.

To be fair, breast cancer is way more common than any other cancer except lung, and no one ever assumes lung cancer, at least for a younger woman with no cigarette stuck in her lips. So yes, most people are going to safely bet the favorable odds and assume a female “survivor” had breast cancer.

OK, I can maybe give her a pass on that assumption. But the second punch, aaarrrgghhh.

I had breast cancer, and therefore I MUST wear PINK every damn day? Really?! It was like, not only MUST I join in the Pink army, I have to SHOW IT by donning the uniform? Do folks really expect that?

Here’s the punchline to this story: the woman is a semi-retired nurse—who teaches intro to nursing classes at a local college. So I—unfairly, perhaps—expected more and better. I expect any medical professional to be a bit more savvy—would not their experiences, even for non-oncological nurses, inform them that there are all kinds of cancer? Don’t they see a more varied swath of patients and ailments? Am I really the first breast cancer patient this nurse encountered who disliked Pink?

This incident took place about a year ago. I did not write about for a few reasons. I was very busy, and in the few moments I did have to write a post, I was often distracted by other topics. Plus, I figured most breast cancer patients who are not fans of Pink have similar stories.

So why write it out now?

I keep remembering the incident because to me it seems almost like a fable or tale, telling what it is like to be a breast cancer patient–except it really happened. And the message of the story is simple: this is what the general public expects of breast cancer patients. We are to join the army, battle, and don the pink uniform—there is no room for different opinions, questions, challenges, or anything. Patients who do not conform just befuddle others. Those of us here in Cancerland know that there is no one right way to do cancer, but the general public does not understand this.

The recent months have been full of celebrity cancer stories, setting standards for ALL cancer patients, and much has been written about them—and yes I’ll contribute to all that chatter (when I get a chance to think and write). I know I will refer back to this story again. While I and others know it is acceptable to do cancer differently, that is not what the story on TV tells. And so, we are expected to don the Pink Uniform literally and figuratively.

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!

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”

A Cancer Free Mother’s Day

A/N: This post will address my discomfort with what I perceive as the way Mother’s Day is now linked with breast cancer. I’ve read a few blog posts about mothers recently, and I think I’m in the minority with my discomfort at this association (again, maybe this is just what I see). I can only speak from where I stand: a woman with breast cancer who is not a mother, whose own mother does not yet have breast cancer, and who was my primary care-giver during cancer. I realize several bloggers I read had mothers who died of breast cancer, and as I do not, so I can only empathize. I hope this post communicates empathy, and is not tone deaf.

That said, I will try to be delicate, but I still think this post will offend some readers. Please proceed with caution, or maybe don’t read.

Later March through mid-May now mirrors October for me, in my Mid-Atlantic American resort area. I cannot get down a street or open a local paper without seeing a poster-sized advertisement for some race, walk, softball game, or other activity to benefit local breast cancer organizations.

In many ways, Pink invading this time of year makes more sense than October. Pink is often associated with springtime. The days are usually warm—great for races or outdoor games. Plus, so many harvest/back-to-school/holiday season events happen at the end of the year, I suspect moving breast cancer races to springtime means less competition from those other events (this may only be true in my region, I don’t know).  As I wrote about wanting to reclaim October last fall, I wondered why October is designated as Breast Cancer Awareness Month; I thought a spring month would be more appropriate. I think I used good ol’ Google, and never got a full answer. Or maybe I’m just being wishful—I hate Pink painted all over my beloved golds and oranges—so a BCAM move to a spring would be a relief in my view. *My apologies to those reading who are not in the Northern Hemisphere, for my American seasonal POV here.

Some of the shenanigans associated with the local fundraisers this year are the topic of maybe another post, but I’m grappling with another painful area right now. What is bothering me is the linking of Mother’s Day to breast cancer.

I noticed it last year, in March, when I got a post-card from a local breast cancer organization regarding a project of sending photos and/or stories about Mom. Of course, there was also the suggestion of a donation in mom’s name for the holiday. I got the same card again this spring, too. As far as I could tell, the moms to be honored need not be breast cancer patients, I think—but to be honest, I did not look too deep into it; I found it too disturbing. My quick scan of the website led me to a donations page, and another suggestion of donations in anyone’s honor for any holiday—including Father’s Day. I admit I was impressed by that—finally an acknowledgement that men can get breast cancer, however indirect that acknowledgement. Donating in honor of someone for a gift can be positive, if done wisely and so long the honoree’s charitable giving preferences are respected. But only a donation in honor of Mother’s Day warrants extra special attention, I see.

So it isn’t the money that is necessarily bothering me (too much) in this situation. Perhaps this post is me trying to put my finger on just what is bothering me about the fact I keep seeing the words: mom/mother and breast cancer together on one page so much lately.

There is a subtle whiff of marketing of course. I understand non-profits need to seize every opportunity to make money. It’s just, why the automatic leap that seems to go like this: mothers = women = women’s issues/health = breast cancer, so suddenly the holiday becomes all about breast cancer? Perhaps my view is too narrow here; I did not investigate organizations for ovarian or any other cancers, to see if there were campaigns to fundraise to honor one’s mother.

But it wasn’t just local breast cancer support organizations that seemed to link mothers to breast cancer for holiday festivities—local and national media linked the two as well. I opened the Sunday paper, and the magazine insert featured Christina Applegate and her mother, both famous breast cancer survivors. Why not feature them in October? Why not feature, I don’t know, a successful mother and daughter-owned business—as in, something women achieved rather than had to deal with? Or a mother and daughter both with any other cancer? I mean, any gynecological cancer would’ve been appropriate for Mother’s Day, right? Or are those diseases not common enough to suit everyone’s needs? Well, that argument doesn’t work—I’ve pointed out enough on this blog about how awareness advocates for diseases such as lung cancer and heart disease use breast cancer to point out how these diseases harm more women than breast cancer (Want Attention? Just Say Breast Cancer). So why no cover story of a mother and daughter team taking measures to prevent hereditary heart disease? As more intelligent women than I have long pointed out—why is breast cancer a stand-in for all women’s health?

I turned on the local news that night, and a woman who overcame a number of odds—widowhood, breast cancer—to return to school for her degree was featured. The cynic in me wondered if they started by looking for this news story by researching local “older” college graduates who were moms, or did they start at breast cancer support organizations to find her.

Is having breast cancer a prerequisite to be considered a mother worthy of honor? Is breast cancer the one and only threat to health and well-being of mothers all over? Is overcoming breast cancer the only achievement women can be publicly lauded for? Because that seems to be the message the media gave out that day, in my view.

Again, I cannot stress enough that I do not want to be insensitive here. Much is written about hereditary breast cancer—because breast cancer has that family link, even for this Cancer Curmudgeon, so it is natural for this mother-daughter + breast cancer topic to be written about. And most of the bloggers I read acknowledged the deaths caused by all hereditary cancers.

So maybe what is making me uncomfortable is this.

My mother’s mother had breast cancer at the very end of her life, over a decade ago. It went untreated because she was in the process of dying of heart disease. Then in 2010, my mother watched her youngest sister, that she cared for as if she were her own child, get breast cancer around age 50. A few months later her own, only child (yours truly), got breast cancer. My mother has had enough of breast cancer. I know there is no such thing as a trade off in the world of cancer (wrote about this a long time ago)—just because everyone around her has had breast cancer does not make her exempt. And that is what frustrates me so much. I was constantly barraged with subtle or direct messages over the past few weeks that seemed hell bent on making me understand something I am only too aware of: mothers get breast cancer. Breast cancer is a clear and constant threat to us, and we cannot ever get away from it.

My mother should be honored because she had to, and still has to, put up with my whiny, angry, annoying breast cancer patient self. Hell, my mother should be honored for putting up with the annoying person I was before breast cancer. So I honored her by shutting up about breast cancer all day on Sunday.

I’ve been tied up in knots about writing this post. I know that many women have had mothers and/or grandmothers die because of breast cancer and I do not mean to imply that their pain should be ignored—of course Mother’s Day is difficult. But it is also difficult for anyone whose mother is no longer alive for any reason; something a friend’s story reminded me of sadly last Sunday. I could not help but wonder if there were adult children out there, again resentful of breast cancer being shoved down throats on that day just as it is in October. I mean, it only stands to reason that this would happen, given the backlash to breast cancer that is happening in other cancer organization campaigns (Pancreatic Cancer Action PSA, anyone?).  Are other children perceiving a message that their own mother’s lives were somehow less significant because they had/have other cancers or challenges? And I very much resented the fact that a day meant to honor and celebrate, for me, was under a cloud of cancer, the same cloud I see nearly every damn day.

So I took one day off from cancer. And I want an end to ALL cancers. I’ll take that any day, it doesn’t need to be saved for a holiday.