breast cancer – Page 4 – anotheronewiththecancer

Want Attention? Just Say Breast Cancer

2/7/14 edit & author’s note: When I write, I assume readers are residents of cancer land and are aware of the latest, um, “dramas”, that are going on in cancer land. But that is unfair, and I’ve been made aware that I should include links to what I am ranting on about. I’m reluctant to do that most of the time because I don’t always want to give something that annoys me more access for more clicks–especially in this situation, because what I’m writing about here is the dubious methods employed for getting attention! But my desire to be clear about what has driven me to write about any topic wins out, so here is a link to the Salon article that made me aware of the Pancreatic Cancer Action PSA, and the PSA itself can be watched there as well. Happy viewing!

What is the best way to push your agenda? Just say breast cancer.

You can push your questionable prevention advice with this fear-mongering because everyone will listen. (I ranted about that a lot last summer, if you enjoy rants: 1, 2, & 3, all about how one report used fear of breast cancer in a title to talk about something else, and yes, I acknowledged even then that I was contributing to the attention.)

You can insist that your disease is more important because it kills more people than breast cancer—I’m looking at you, most heart disease-and-women campaigns. February is almost as annoying as October, since everyone honks about breast cancer to highlight how heart disease kills more women than breast cancer. As if everyone was not already tired of the phrase breast cancer. Because the only way to advocate one cause is to smack another down, apparently.

You can imply all your cancers are worse because of lack of funding and awareness because the Big Pink Ribbon Bully stole all the attention. As I’ve said before, breast cancer is a bully that is now being bullied—payback is a bitch. Everyone is tired of all the attention breast cancer gets, yet no one will shut up about it, myself included.

I’d like to say the best way to handle the pancreatic cancer PSA is to ignore it, because the backlash and buzz is drawing attention—no doubt that is exactly what is desired. It just proves my point: want attention? Just say breast cancer.

But ignoring it is wrong. Of course pancreatic cancer needs attention. And frankly, I have heard or seen people with other cancers comment that they wish they had breast cancer, instead. I don’t presume to know why, but I can guess. So the statement in the ad was no big surprise.

But I’ve also read one blogger’s thankfulness to have a gynecological cancer rather than breast cancer (sorry cannot remember who or where, cannot locate), because of all the silliness and sexualization around breast cancer, knowing she’d loathe the pink ribbon even more if she had breast cancer. She’s glad that at least her cancer is taken seriously. So there’s that too.

This is why I hate all the colored ribbons—it just creates a divided cancer gang land. Gotta be true to your colors. No thanks. People are sick and jealous of the attention breast cancer and Pink hogs (see What Do You Mean There Are OTHER Kinds of Cancer Besides Breast Cancer?!). Understand why Pink is doing more harm than good yet? Understand why Pink-coated-everything has got to stop? Understand why that ribbon does not represent this breast cancer patient?

When I was treated for breast cancer, I was not ushered into a separate room with pink champagne, cupcakes, feather boas, and a party atmosphere. I slogged it out with patients with all kinds of other cancers. Just because so many people think they know all about breast cancer (NO) because they’ve seen a few Pink ads, breast cancer patients still have to get the same (slightly better than past years) slash, poison, and burn treatments many other cancer patients get. What non-breast cancer patients are NOT aware of is the fact that there is a good chance it will come back and kill me—I’ve heard that twice in the past several weeks from two different doctors who are involved in my cancer care. That is Pink’s dirty little secret: breast cancer still makes a person sick, the treatment is still horrible, and it still kills.

Dead is dead, regardless if it is from pancreatic, breast, prostate, or ANY cancer. Can the conversation, the message, the fall-out, from the PSA be an understanding of this simple notion?

No, because I’m sure there will be a segment of people thinking breast cancer patients, with our alleged advantages, should just stop whining, stop stealing pancreatic cancer’s thunder, stop insisting we have it just as bad, because in their eyes, we don’t have it as bad, no matter what we say. Because I know folks with mets breast cancer, or other cancers, have thought me lucky. I’ve thought it myself. I wrestle with it all the time. So should I shut up about this PSA? Is this what breast cancer patients should keep in mind before talking about this PSA?

At any rate, the PSA worked, because it invoked breast cancer. Attention, guaranteed.

Thank you Pancreatic Cancer Action, for reminding this breast cancer patient to not shut up about the horribleness of all and any cancer, equally. Thank you for reminding everyone just how much work there is to do, for highlighting just how badly Pink has failed in conveying the gravity of getting a breast cancer diagnosis, and for showing how un-classy it is to smack another down to lift your own self up.

Not Behind Me, Woven Into Me

“I don’t think anyone ever gets over anything in life; they merely get used to it.” – Douglas Coupland

In my view, cancer is a two-headed monster. There is the actual disease, the medical condition, to be dealt with as best possible, hopefully to ultimately achieve a NED status. Then there is the other head. I don’t know what to call this head, other than the culture of cancer, which angers and repulses me for the most part. For me this includes everything from the warrior metaphors, the fuzzy-wuzzy, airy-fairy “hope-believe” and tyranny of positive thinking that I do not buy into, and the supposed path a cancer patient is to complete: one of getting treated, taking advantage of the personal growth and enrichment opportunity by learning lessons and accepting cancer as a gift (how do those poor saps who do not get the gift of cancer ever grow to be better people—YES I’M BEING SARCASTIC), and then putting cancer behind once treatment is all done. There is probably more I’m just not thinking of right now.

**Side note: I’ve written about much of the above before, and my feelings and opinions have changed little. See list of related posts at the end.

It is that last notion, the one in which “now that I am done with treatment I am supposed to be over cancer” that is chasing its own tail in my head.

From the day I learned I had cancer, the idea that I’d ever be over cancer just did not make sense. How can one get past cancer? The biggest obstacle to that lofty goal is the constant fear, however sharp and present or dull and distant it is, that cancer will come back—it is always there. Not to mention that I will always have to ‘fess up to having had it, when getting new medical care providers or insurance, or who knows what else; I always have to check that box in medical history. Cancer is my history, and history has everything to do with the present. Continue reading “Not Behind Me, Woven Into Me”

So Let Me See If I Have This Right (In A Nutshell)

If you have breast cancer, and you dance around before your mastectomy for the willfully ignorant masses and post it online, you get to be hailed as an inspiration, and have mainstream media journalists proclaim your actions as THE way to do cancer.

But.

If you have breast cancer, Stage 4 no less, spend many years using social media to try to tell another side of cancer, the one the mainstream media will not show because it is ugly, involves the likelihood of death (“losing the battle”), the one that defies Pink, and you get not one, but two, insensitive op-eds written about you? You are called unethical? Judgment of you is called for and encouraged in regards to your behavior? And you are called a standard bearer for warrior culture when you’ve rejected the battle metaphors?

So, do I have this right?

Okay. Just checking.

Thanks, y’all. It’s been an eye-opener. Oh who am I kidding? No, it is not such a surprise as I step back and reflect (not reflexing, you know what I’m talking about). Same shit, different day, just more extreme.

Oh I’m Sorry, Is MY Life-Threatening Cancer Making YOU Uncomfortable?

There have a been a few times comments on my posts have made me think and made me want to expand on the idea into another post. I try to respond to all comments as best I can, and the discussions can be quite good. But I think maybe some folks don’t read the comments sections on blogs, which is a shame; I’ve found some of the best ideas, thoughts, and conversations in comments not only on my blog but others. So sometimes it is a good idea to write a brand new post. I just haven’t done it before because of time constraints or I was on to some other topic, or I was just being lazy.

Swoosieque just made a comment on my previous post that made me think of an idea that is a small part of one of my motivations for blogging. This one motivation—among a few others very important to me—is to challenge the status quo of cancer culture and conversations. (Pssst, for those new to my blog, I don’t like Pink and all that rah-rah that goes with it, and I’m alone and surrounded by it in my rural area, so online, this blog, is a great way to rebel when smacking my head against the wall in dealing with people in real life gets to be too much.)

The previous post addresses one of the dumbass things people say to cancer patients. As I mentioned in that post, I’m not really interested in that topic anymore; I guess it just doesn’t bother me as much because there are so many other irritating aspects of cancer culture. But Swoosieque’s comment made me realize that maybe the dumbass things people say is a small part of the bigger picture, so I’ll address that big picture using the example of these dumbass things.

Swoosieque talked about (seriously, click over there and read our discussion) how she too was uncomfortable and did not know what to say to a person with cancer 27 years ago. Her larger point is about how, until she got cancer her own self, she just did not know what to say to cancer patients. I KNOW I’ve said dumb, maybe offensive, things to cancer patients my own self too, before I got cancer, and I wrote about it.

But that’s not really what I want to talk about. She pointed out that back then, cancer was not spoken of. That got me thinking. She is right, one of the points I hear in cancer conversations is that the taboos around cancer, especially regarding breast cancer, are now broken. We have indeed, as a society, come a long way.

But we have not come far enough.

I truly dislike it when anyone uses the argument or example of how “breast cancer used to never be spoken of, and look at it now”. Folks will point to all the damn Pink as evidence of how far we’ve come. While I dislike Brinker (and Komen and Pink), I agree with the sentiment behind a statement she once made, something along the lines of until breast cancer is eradicated, there is not enough Pink.

Well, I’ve had enough Pink thanks very much, (and I capitalize Pink to include the ribbons and all the party culture and whatnot it represents which I so dislike), but she is right—the conversation and research cannot stop just because we’ve come this far. Just because everyone is so “aware” of breast cancer (don’t even get me started on that topic today), what, we’re all done, problem solved? Excuse me, I still got breast cancer and am likely to get it again—problem NOT solved. While it may be impossible to cure cancer, at least any time soon, that does NOT mean attempts to do so, or at least to prolong life, improve effectiveness of treatment, make treatment less miserable, and so on, should just cease because, hey, look how far we’ve come!

I am of the same opinion regarding the dumbass things people say to cancer patients and the dumbass things they want to hear from cancer patients. Sure, cancer, breast cancer especially, is an acceptable topic even in TV shows now and maybe it wasn’t 20 years ago—but c’mon—that was 20 years ago! Society still cannot seem to get past a few tired old clichés. And I don’t know about others, but I heard the same cliché repeatedly over my treatment timeline, from people I barely knew AND from family members, multiple times from the same people, which kind of made me think everyone was being insincere. But I am sure they were being sincere. What I think is more likely is that while cancer is no longer taboo, it does not mean everyone is all that comfortable with it either. If they were, maybe we could get real and honest, and there would be no need for blogs, essays, and books about all the dumbass things people say. Because real conversations would be taking place, not trite phrases gently spoken to cancer patients so often that we can actually make a list of them (no I don’t have a list, I lost interest, do an internet search for the aforementioned blogs, essays, and books).

I remember once reading in a comments section (see what I mean that the best stuff is in comments?) of an essay that us cancer patients should not be so harsh towards our friends and others, because they too are new at dealing with it. I’ve addressed this before. And I get it, like I said above, I was one of those idiots who did not know what to say and got a harsh lesson by getting cancer my own self. This is one reason I’m driven to talk and write about it. The only way to get past this uncomfortableness is to start a conversation about it. The essay in question addressed how long cancer treatment takes (months!), and how friends and others tend to fall away because they, especially younger people, do not understand or have no experience with serious, long-lasting illnesses such as cancer. The essay introduced the topic, maybe the writer hoped to have a conversation that resulted in change, but that didn’t happen. Instead of listening, some commenters got defensive. Yes, like I said, I was such an idiot once, so I will try not to be too harsh when I say that I can only understand the “I don’t know what to say” predicament so far. Yes it is hard to know what to say, how to act, but cancer is harder. I want to scream at the commenter, “Oh I’m sorry, is MY life-threatening cancer making YOU uncomfortable?” How can we ever get over this discomfort unless it is confronted?

I’m tired of the “well at least we’re talking about it” and the “treatments are much better now than they were” excuses. I’ve said many times and I will say it a million times more, I AM grateful for all the funding and awareness and so forth that kept me from dying because I was lucky enough to get cancer now, not 30 years ago. But my cancer experience was hardly cushy, and just because we’ve come this far, we should NOT stop. I want more and better (see my About page).

Remember how awesome TV dinners were—pop them in the oven for 45 minutes, go do something else while it cooks and presto! Dinner is served with little effort. Then along came microwaves. I bet women thought those hand operated washboard things were waaaay better than washing clothes in the river, and now we’ve got washing MACHINES. Whoa! Yes, I’m being absurd, but to make a point. There is always a better way and being satisfied with the status quo just leaves everyone in a rut. I want out of the rut.

Science IS still working on “better” for cancer care, why does society and culture lag behind? Sure, sure progress in culture may be objectionable to some. Thirty years ago Madonna was lewd at the VMAs and now we got Miley making Madonna look tame. Some would say that kind of cultural progression is not so good. I don’t care about that. I do care about bringing some honesty into the societal conversations around cancer, breaking out of the mold of overused clichés, only spewing positive, “inspirational” crap, and the idea that Pink is effective. I will continue to push to get real.

So dear Swoosieque, I thank you for making me think—I bet this did NOT go where you thought it would! Does not have much to do with what we were talking about, I guess, but good all the same. You inspired me to think differently about and address something that bothered me that until you came along, I just couldn’t put my finger on it. I think I said somewhere in our chat I’d write a short post. HA! Like I could ever do that. I remain, as ever, yours truly, the very long-winded, Cancer Curmudgeon.

My Reality and Your Fairy Tale

I’ve never really had that one post about the dumbass things people say to cancer patients. The one time I started to write such a post, I wound up focusing on a small slice of all those irritating phrases—I focused on the awful, blame-the-patient phrase of “lost the battle to cancer”, and how much I dislike the euphemisms for death.

Books and many essays have been written about the dumbass things said to cancer patients, and I couldn’t really add to the conversation, so I lost my motivation to do so. Now that I’m a couple of years past my final Herceptin infusion, these dumbass things are not said to me, so they are not on my mind as much. And really, I’ve finally accepted the idea that sometimes what is said to cancer patients is really meant to soothe the cancer fears of the person doing the talking, not just the fears of the actual patient.

But I had the bad luck to reflect on one particular dumbass thing today; the phrases that reassure the patient that “everything will be alright,” or “my friend/relative got cancer when she was 35 and lived to be (some big number), and she was fine…never had any more cancer!”

I’ve had a lousy month, or maybe a lousy past two months what with one problem after another. The latest involves finding new insurance, and in turn, I’ve just learned I will need to find a new oncologist because my current one does not participate in any of my new, limited choices. I’ve been scrambling to find out which of my current doctors do what plans (the internet is a failure on this, gotta call each of them to get the nitty gritty details). Long story short, I got into a conversation today with the surgeon who performed my lumpectomy two years ago and asked her for suggestions for other oncologists I might try.

I think she actually thought I was considering just abandoning oncology altogether, just not even bothering to see one anymore, since I’m about three years out from initial diagnosis. She became a bit grave on the phone. She told me I had a “very aggressive, serious cancer” and, given my younger age and the type of cancer (aggressive, fast growing, HER2+), I need to be in the care of an oncologist “for a long, long time.” That last phrase she said slowly and with great emphasis.

Yeah, I know. I need to see an oncologist twice a year for 2014 & 2015, and then once a year for the five years after that. It is a long time, and I hope I can reach 2021 to see my first calendar year free of oncology appointments. Honestly I’m afraid to let myself look forward to that day, it seems so far away. And I know my cancer was serious. I do not take my cancer lightly, and I’m not going to blow off getting a new oncologist because I feel fine right now, which I don’t anyway. Rather, I tend to suspect every twinge of pain, every change in body shape or function, thinking it means cancer is back. The sense of threat is real and sometimes very near the surface.

I really like my surgeon, maybe a bit more than I like my other doctors, especially because she is frank, no non-sense, and always gives me all the odds, probabilities, and facts sans sugar coating. But today I thought, great, I do not need that reminder now, when I already have bajillion other things sending me into panic mode. I began to talk myself down, to remind myself that just because I read blogs reporting various tales of recurrence, that isn’t necessarily going to be my fate as well. Then I thought back to all the times I heard people with their dumbass things said to cancer patients telling me it will all be ok in the end, because there is always so-and-so who just had a little cancer that one time and lived another 50 years.

There are so many reasons to dislike this little anecdote about the person who lived oh so long after that one little cancer incident. It is so dismissive of the very real fear and very real—sometimes high—possibility that cancer will recur in the person to whom this is said. While I do welcome anecdotes, because the small percentages or small likelihood stats (some of which I fall into) are made up of people, I still tend to consider all the possibilities. And this will sound so snotty, but when I weigh the tale of some random person told by some other random person against the word of my doctor, I take the word of the medical professional—who I give money to, BTW—over the random feel good story.

The words of my surgeon are my stark reality and the reality of many cancer patients, one that sometimes is conveniently ignored by those who wish to believe in the tale of the person who lived 50 or so more years. It isn’t a total fairy tale, but it may as well be for some. For those with Stage 4, whether upon initial diagnosis or recurrence, cancer is the rest of life, and that may be a long, long time, but probably not. For me, with my likelihood of recurrence, cancer is the 10 years from October 2010 until sometime in 2019 or 2020, if I’m lucky, and then who knows how many more years if that likely recurrence happens. Cancer does not claim my every moment right now, although it occupies more moments lately as I grapple with an upcoming 6 month check-up, that is, if I can get my insurance organized and get a new oncologist. Right now, it is taking up a lot of my long, long time.

So to those who insist on the idea cancer is no big deal, that it will be tiny a blip and I’ll get another 50 years without incident—if you continue to ignore my reality, I’ll continue to ignore your fairy tale.

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

Or: Shoving Pink Down Your Throat

Yes that title is sarcastic.

The topic I have not seen addressed much in breast cancer and Pink discussions is resentment patients with other types of cancer have towards all things Pink. It is possible it is being discussed and I’m not seeing it, however, given I can barely bring myself to read about this topic much lately. I find I’m unable to read even essays criticizing Pink; I cannot read another list of the outrageous products/corporations aligned with Pink, each pointing out a new lowest of the low in the most absurd use of Pink as marketing tool, most preposterous item turned pink. I can see it for myself on the rare occasions I venture into a store, or if I’m accidentally near a TV, or use the internet—which means seeing the ridiculousness is unavoidable.

I confess that in the past year or two I’ve been so swept up in my own resentment toward Pink that while I was vaguely aware that some patients with other kinds of cancer were also sick of Pink, it is only since maybe September I’ve begun to grasp the depth of the resentment, and yes, I think I even saw near-hatred the other night. It pops up on a variety of social media, and many are just expressions of frustration, questions as to why this or that colored ribbon/cancer doesn’t get as much attention, or exasperated reminders to not forget, well, name any cancer associated with whatever month, I’m afraid to try to list for fear of omission. One painful post from a patient with a gynecological cancer proclaimed October to be the time of year in which every day is devoted to telling the world only one kind of cancer matters. The phrase I see quite a bit from patients with other kinds of cancer is “shoved down our throats” in reference to Pink and pink ribbons.

This is what Pink has come to; some perceive it as edging out absolutely every other disease and cause in an obnoxious way, and one’s perception is his or her reality. It is not exactly clear who these patients hold responsible for all this shoving down of the throat. The pieces I’ve seen and read do not seem to differentiate between products with ribbons on them (the kind that claim to send a few pennies to a charity or the ones that just have a pink ribbon with no such claim), pink parade-like races, or people wearing anything from tiny pink ribbon pins to head to toe pink-logoed ensembles. Perhaps it appears all the same to the very frustrated. Well, one delightfully profane post did flat out accuse some folks of slacktivism in matters of pink clothing and accessory choices.

I highly doubt it was the intention to detract attention from other cancers or issues, but it happened, now what’s to be done about it? Why should these patients with other kinds of cancer—being overwhelmed with their own diagnosis, and underwhelmed with support systems or websites catering to information about other kinds of cancer—make the differentiations mentioned above? Is it fair to expect those who bewilderedly ask, “why does Pink get all the attention?” to seek out the answers that have been written about mostly in breast cancer related articles, such as the lucrativeness of Pink and the juvenile enjoyment society gets from talking about boobies? Is it right for a breast cancer patient to complain about Pink and all the so-called wrong kinds of attention it attracts, when all these other cancers get little to no attention, and want the attention and more importantly, the funding for research that goes with a stupid colored ribbon?

While I may be a jackass, my aim here is NOT be so insufferable as to presume to speak for those with other kinds of cancers. Even if I were to now get another type of cancer, I’ve already had breast cancer, so to society, I am inextricably linked to that damn pink ribbon, no matter how much I scream and stomp on it to reject it. And anyway, I am incapable of speaking for anyone else at all; I’m barely able to speak for myself half the time. But I’m still not always able to shut my mouth.

Since diagnosis I’ve been aware that the cancer center at which I was treated bathed the building in pink light each night in October. It annoyed me before, but this year, reading about all of the throat shoving, I think differently. I do not know why the lights are turned pink this month, there are no signs outside the building proclaiming fundraising goals or awareness slogans. It is a small town cancer center—no research or breakthroughs to benefit all breast cancer patients the world over are going to happen there. I’ve inquired about the reason in my comments to the center I made recently. I do not understand the need for breast cancer awareness…at a cancer center, for crying out loud. A building that exists as a place to treat cancer patients is the epitome of all cancer awareness. Thus, a pink light becomes overkill, a pink light becomes the favoring of patients with breast cancer—their lives? their money?—over all other cancer patients, a pink light becomes the shoving of a cause down many gagging throats.

Perhaps I am the only one of thousands of patients treated at that cancer center that has interpreted the pink light this way. Perhaps others do see it that way and just don’t care, or don’t think it worthwhile to say anything and I’m sure I come off as another “selfish” breast cancer patient biting the hand that feeds. But, unless that light is doing something other than just doing the same old “breast cancer awareness” where awareness is needed least, I cannot help but think it is a bit insensitive to patients with other kinds of cancer. I have a hard time believing I’m the only one thinking this, and maybe my complaint combined with others can get attention and make a change. But I’m a Cancer Curmudgeon, a misanthrope, a socially awkward grouch always saying the wrong thing, so I doubt it. I do not like putting much effort into something that doesn’t produce visible results, which is why I’m so frustrated this year that given all the activity by those criticizing Pink, like that Orenstein article, there has been little to no reduction in Pink silliness (at least in my area). I do not feel good about myself for speaking up; I don’t even know right now what drove me to do it. But I don’t really regret it either, even if it was not my place to say anything.

I wish everyone pushing Pink would become less obtuse about the scorn, frustration, and ill-will it now provokes. Awareness is a two way street, maybe it is time to re-assess this old pink ribbon to see if it really is still working. Some folks are oversaturated with it, and others are still clueless about too many aspects of breast cancer. I’ve written about that before (Failure of Awareness), and maybe will again. I see comments saying something like those complaining about Pink cannot deny how effective it is. Effective at what? The stats as to whether breast cancer incidence and related deaths have been reduced, or increased (some say stats are falsely inflated by classification of DCIS), or remained the same have been covered by others, and I’m not qualified to go into that. But the fact remains people still get breast cancer, I still got it, people still die, and while the treatments, especially Herceptin, developed as a result of Pink dollars and awareness (YES, I GET IT, and I AM grateful) keep me alive, for how long? The same problem is still here, just more people know about it and it is acceptable to talk about it. And they know about it and talk about it to the exclusion of every other cancer.

And what will be the fall-out from the undercurrent of Pink resentment from the patients with other cancers? As much as TV medical talking heads like to point out that heart disease and lung cancer impact more people, breast cancer still occurs in a hell of a lot of people, meaning there are too many potential customers willing to buy treatment and Pink crap for Pink to lose any power. And c’mon, how will our culture ever ignore boobies? So the backlash may not get anywhere, but that does not mean this resentment should be ignored.

Symbols Are Not Solutions Rant 2

Preface: First Ribbon Problems

Rant 1: Make No Mistake About Where I Stand

I’m In Love With That Song

“I’m in love with that song.” –from “Alex Chilton”, The Replacements, lyrics by Paul Westerberg

I have been feeling utterly defeated by all the Pink this October, despite my earlier claim to Take October Back. But a very welcome distraction arrived for me last week in the form of the 16 nominees for induction into 2014’s Rock and Roll Hall of Fame.

I pause here to acknowledge the absolute lameness of a former punk-alterna-girl being so invested in the Rock and Roll Hall of Fame. Rock in general is about rebellion, and the Hall of Fame is an institution, the sort of which rock should rebel against. And even if rock became “respectable” somewhere along the way, then things like early and classic rock belong in there, but the punks that came along later to rebel against the established stuff, and then the post-punks after that, I mean, wouldn’t they rebel against that former rebellion-turned-new institution/establishment? See the Sex Pistols’ infamous rejection of their induction in 2006. Even worse, I have to pause and acknowledge that in the past few years I’ve seen a few of the bands that provided the soundtrack of my teen years creep in, which just really means, I’m getting old.

Yeah, yeah, this is a cancer blog, and that will come into play much later in this post. This blog is an indulgence for me; my view on cancer, my personal experience with it, and how I (don’t) function in an American social culture that surrounds cancer, which I find mostly distasteful. So I’m indulgently rambling about music, because it was the one respite I had once I found myself a bit lost upon exiting the treatment treadmill (“you’re all better now, see you in 6 months!”, ha ha). Proof of my allegiance to my method of beating cancer blues is everywhere; in the post Punk Rock (Breast) Cancer, my tattoo (Red Hot Chili Peppers, Hall of Fame inductees in 2012), hell even my gravatar (The Ramones, Hall of Fame inductees in 2002).

I skip over the crap like “rap doesn’t belong” (yes it does, and I’d argue that until I’m blue in the face, and even if I lost the argument, I’d still argue it), “Yes/KISS should’ve been in there loooooong ago”, or “the world is doomed because more people like Nirvana than Link Wray”. Yada, yada, yada. I love watching the arguments unfold on various websites, and agree and disagree with so much of it. “We all come from the damn blues,” said Chuck D. (Public Enemy) in his acceptance speech last year. That should be made into a sign and posted above the door to the museum in Cleveland, or maybe noted in every article about this comparatively (to cancer, for me) silly topic, to remind everyone with an opinion how the whole mess called rock and roll got started.

My humble opinion is any person or band that is inducted, or heck even nominated, including the 16 this year, deserves to be there. I do have my favorites however, and this year I’m voting every day for Nirvana, The Replacements, N.W.A., LL Cool J, and the fifth option is a wild card for me every time. I could write forever extolling the qualities of my choices, but it is the first two I’ve listed that matter most to me now.

As a lonely punk-goth girl (weirdo) growing up in the 80s (remember in the 80s, there was no interwebs, so radio and magazines were the only exposure to music available) I hated what was on the radio; I lived in a rural area where there were no alternative stations—D.C.’s WHFS was an hour out of range. I loved the left of the dial stuff like The Cure (nominated once), The Pixies (never nominated, an outrage) and R.E.M. (inducted in 2007 and yeah, gonna be a snob and reveal I was fan well before they got played on regular radio, and got all famous). I used to stay up for those one or two hour programs of “college rock” on the radio or “120 Minutes” on MTV just so I could hear stuff to my liking. It was on one of these programs I first heard Nirvana’s “Smells Like Teen Spirit”.

People always like to talk about where they were when they heard the bad news of some horrible event, and lots of cancer patients remember all too well, and have written about, where, how, and when they first heard of their diagnosis. My own memory of that, still so sharp, I’d like to erase. But I always want to remember the feelings and thoughts when I heard first heard “Smells Like Teen Spirit”. I was beginning my junior year of college, tired from working my ass off all summer to pay for the privilege of extended education, but still unsure about my future (well, that turned out unexpected, what with all the cancer). I heard that song and knew it would change everything.

Reams have been written about the influence of Nirvana in rock music. To me it was much simpler: the weirdos won. Finally, I could hear music I liked on the radio—which was great because my car’s tape player was forever breaking. With the nomination and almost assured induction of Nirvana, the weirdos win again. And I cannot let this year or this post pass without expressing shock and joy at the nomination of The Replacements. Of all the precursor bands to the so-called alternative music revolution that happened after Nirvana got famous, those bands that faded back into obscurity after it was so quickly over, I thought that only Sonic Youth would get any eventual recognition, and I still find their lack of nomination scandalous. So I view this nomination of The Replacements as nothing short of triumph, even though I am sure lots of people heard their name last week and said, “who the hell is that?”

But here is the funny thing. I know it matters a great deal to me, but not much to most people. All summer, I’ve worn my Nirvana t-shirt with the smiley face logo (see banner) on the front and the less offensive claim on the back that the band is “flower sniffin’, kitty pettin’, baby kissin’, corporate rock whores” (the other version is worse, look it up). People I interact with saw my t-shirt front and asked about Buddhism! Here’s this band that is still a great favorite of mine, that had this tremendous influence on my young 20 year old self, and on the music industry, and no one seems to know who they are/were anymore. Because I immerse myself in entertainment media, I’ve been barraged with details of the 22^nd anniversary of the release of their album “Nevermind”, the 20^th anniversary re-release of “In Utero”. I get a skewed view of the world, I think they mattered greatly. And yet, I constantly interact with people who do not even remember them.

It mirrors how I experience cancer at times. As a breast cancer patient with a tiny blog, who tends to seek out info that reaffirms a notion that Pink is WRONG, I sometimes get the sense that Pink, ribbons, and cancer are bigger issues than they are to most people. I have to remind myself that most people are not as tuned in to the issues, the lies of Pink and that is why they ignorantly continue to buy into it. I have to calm myself down—most people do not deal with breast cancer every day and do not know or understand that some breast cancer patients hate Pink. I wanna scream, “why don’t they get it, there are a million articles about how pinkwashing is damaging.” Well, because not many seek out that info.

Sure, lots of people are “touched” by cancer via friends and relatives, but it is only a small (hopefully growing) segment of breast cancer patients that have done the homework behind what is really happening behind the Pink-party-charity explosion. Just like most people are aware of a Rock and Roll Hall of Fame, but maybe, to paraphrase Nirvana’s “In Bloom”, likes the pretty songs, likes to sing along, but don’t know what it means.

To avoid being strangled by pink ribbons and all the surrounding bullshit, I’ve reveled in the news of the nominations. For the past several days I don’t think I’ve played a song on my phone that was not a Replacements song—yikes, better mix it up with songs by the other nominees! I’ll listen to “In Utero” for the millionth time, I’ll vote (maybe pointlessly) for my favorites on the Rock Hall website for the next several weeks; it is a great diversion. And when Nirvana’s living members accept their induction next April, I’ll try to remember that every once in a while, the outsider voice becomes the mainstream, and I’ll hope that the small segment pointing out all that is wrong with Pink can capture the attention of the world, without smashing any guitars.

“To truly love some silly piece of music, or some band, so much that it hurts” from “Almost Famous”, film by Cameron Crowe, 2000

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.

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

Make No Mistake About Where I Stand

Symbols Are Not Solutions Rant 1

I’ve never written that one definitive post that lists everything I find wrong with pink ribbon culture. Sure, I have put a warning on my About page: “I am not a fan of the pink ribbon culture, and—warning—my words are going to reflect that quite often.” And I’ve sprinkled various points of criticism randomly in many posts (or maybe just snide remarks), or maybe a post here and there focused solely on dislike of Pink —Take the Mythical Image of the Strong Warrior Breast Cancer Survivor And Bury HER Once And For All is only about one troubling aspect of Pink—it certainly does not take on the marketing, the sexualization, blah, blah, blah. So while I have not listed EVERYTHING I hate about Pink the way others have, I still think it is pretty clear exactly where I stand to be counted on the topic.

And if it isn’t clear, let me make it so: I reject the Pink Ribbon. It does not symbolize to me what it does to the general public. I only see a bundle of lies when I see it. I may have had breast cancer, but that symbol doesn’t represent me or my cancer experience. My beat up old rock concert t-shirts and rough denim cut-off shorts I wear most days symbolize who I am better than that ribbon.

I currently do not see the need to make my conclusive list supporting the “why” behind my ribbon rejection; there are a few books, at least one film adaptation, and countless essays and blogs that have expressed most of my thoughts on this topic, although I do not agree with exactly everything in the anti-Pink view, just most of it (I’m a Curmudgeon, I’ll always find something to pick on). I write this blog under the assumption that most readers are on the same page in dislike of the pink ribbon, so I’d be preaching to the converted. Since I do not wish to be told how to do cancer, I must respect how others do cancer, and lots of folks do it by embracing the ribbon. So who am I to try to convince anyone differently? So, I’m not gonna preach to the unconverted, either. For those on the fence, see the aforementioned other essays. Those others have written it far better than I ever could.

I’ve been feeling unmotivated, uninspired, and just plain down of late, especially in the area of my continued rants against all that I find objectionable in cancer culture, especially Pink. As Pinktober approached, I saw several blog posts encouraging the need for continued activism, including blogging. In my current state of mind, just writing a blog or letters to local papers about it is simply not enough, because like attracts like. People seek out the sites, essays, and letters that they already agree with, I do it too; leaving little chance for mind-changing to happen. I see lots of blogs and comments on blogs and website that criticize the ribbon, and I get all encouraged, but there must be tons more that are in favor of it, since it is still so prevalent. And like I said above, out of respect for those who embrace it, I just feel unmotivated to bother trying to convince anyone. So what’s the use?

What happened with that Peggy Orenstein article that was published in April? Please tell me it made a difference? Please tell me that people who normally do not give the issues around cancer and ribbons any thought maybe took a chance to read it and maybe learned something? From where I stand, all I can see is a shiny Pink machine that did not even get a dent or scratch, it just keeps rolling. Seriously, if someone can show me that some hearts and minds were changed, please do. I could never access the comments on the article so never got to see any responses to it in which maybe someone said, “oh wow, I had no idea, thanks for the eye-opener”. Races and all manner of events are proceeding, it seems to me, without a bat of the eye.

Back when that Orenstein piece was published I acknowledged the strange timing, about half a year away from October, and I knew that any 2013 Pinktober events were already planned and in motion, so no real change could happen. But here is the thing: I secretly hoped it would. I know my blog comes off as negative and angry, but I consider myself positive, because, get this, I actually expect change, and I think the change could be good, although I know those that embrace pink would disagree. Where I screw up is I expect it to be big and immediate (I lost all patience as a result of my cancer experience-I did NOT improve as a person because of cancer). Change takes a long time, and it happens in tiny, tiny doses. There will be more on this point later.

Some blogs/essays have suggested taking a positive approach, write about what awareness should mean—the real facts of breast cancer, rather than just writing about the awful feelings the ribbon churns up. I’m not smart enough, or have enough understanding of the medical facts to do that. I’ve been recently reminded that I’m a medical idiot, and as much as I thought I had the professional patient thing down, I really don’t. So I leave the imparting of wisdom and discussion of the Big Issues to the more knowledgeable and experienced bloggers. I’d like to not write about my feelings about the Pink too, as has been suggested, because I’m sick of it. But covering my eyes, ears, and mouth won’t make Pink go away either. I mean, I keep trying to ignore Miley Cyrus, and she still persists.

As fall approached this year, my heart began to sink despite my earlier wish to reclaim October as my favorite month. I hope to eventually answer the question I posed a few paragraphs ago—what’s the use?

To be continued.

First Ribbon Problems

Preface to a Series of Rants Called Symbols Are Not Solutions

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

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

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

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

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

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

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

To be continued.

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

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