Category: Uncategorized

Oh, And Another Thing: Stop Using Fear of Breast Cancer to Further Your Agenda

This is what I get for posting pre-coffee. I got up, walked dogs and wrote a post in my head while doing that, typed and posted, THEN wandered over to the coffee maker, having forgotten to include a big point in that previous post.

The worst thing about the “Time” magazine post had to be the damn title: “More Breast-Feeding Could Save Billions and Prevent Thousands of Breast Cancer Cases”. Those last 6 words. I mentioned in the first of this unintentionally ongoing series of posts that I follow news and blogs to keep up with health and breast cancer issues. Putting words like “prevent” and “breast cancer” in a title will guarantee not only I, but many women will read an article. And the article is not even about breast cancer, really. The whole point is to get folks to see the importance of breast feeding. I mean, I could care less about breast feeding issues since I never wanted kids, and for years even I’ve received the message loud and clear: breast feeding is the best thing to do in the whole world. Think pink ribbon awareness is achieved, maybe even over saturated? So is this issue. When a childless curmudgeon such as myself gets it, much like the NFL draped in pink, it is a signal the target market has “got it”. My guess is that since the breast feeding community still puts the message out there so much is that certain demographics are not being reached. Just like with pink ribbon marketing—the white woman of a certain income level (former income level in my case) has the message, and repeating it over and over to that group does not translate into getting the message to the other demographics—so change the tactics, OK? No I don’t know how to do that, if I did, I’d be doing it.

Now, don’t comment to me about breast feeding and getting the message to whatever group is not yet doing it. That ain’t my ax to grind today, or any day, so telling me problems with breast feeding awareness will fall on deaf ears.

What is pissing me off is that once again, the media AND advocates for one issue are taking breast cancer fear and using it to further their own agenda. Want attention for your cause? Figure out a way to drag breast cancer in your sound bite. The words will get in the headline or title of the article, and certainly in the tags, and presto! Instant readership. And hell, you’ll even get someone like me, who does not give a damn about your issue, to write not one, not two, but three posts about your issue—yes I realize all my ranting is just feeding the mess. I’ve talked about this before in Does Breast Cancer Owe It to Other Cancers?, advocates for other health issues cleverly realize that Breast Cancer Pink is the Big Deal. Want attention? Just say any magic words that include “breast cancer”. “Heart disease kills more women than breast cancer.” “Breast feeding prevents breast cancer.” The result is immediate attention for your personal cause.

Those of us who criticize Komen and Big Pink for breast cancer fear mongering to sell unnecessary procedures and extra mammograms (hmph, mammograms, snort of derision), just look what Komen and Pink have launched. Now everyone is doing the fear mongering dance. Everyone screams “breast cancer” to get attention even when what they have to say has little to do with breast cancer, and the public will continue to tire of hearing about breast cancer. And the problems of breast cancer will continue to go overexposed and unsolved.

In the previous post I called upon those doctors, Dr. Kathleen Marinelli, MD and Dr. Melissa C. Bartick, quoted in the piece to come up with a way to expand this “prevention method” for women who do not want children. Perhaps that is unfair for me to ask that, since their fields of expertise are Perinatal Medicine & Neonatal Medicine and Research, respectively, and I see no mention of Oncology in relation to their names according to good ol’ Google. I lay the blame not only at the feet of “Time” magazine and all media, but also at the feet of health professionals who sensationalize their health issue by using breast cancer fear as a selling tool. Don’t talk about breast cancer unless you’re giving me something I, Jane Q. Breast Cancer Patient, can use. And no, breast feeding to prevent breast cancer is not useful.

Part 2—In Which I Do Not Cool Down Later

I suppose normal people get mad about something, and then cool down about an issue as more time passes. Not so for the curmudgeon. I wrote the previous post in a fit of white hot anger. I went off. I blew a gasket. And a million other clichés anyone can think of. One would think that after 12 hours have passed, my hot head would’ve cooled down. Nope. If anything, my head is hotter.

I wrote from my narrow minded own point of view. That “Time” post contained some—for lack of a better word, triggers—for me. I get so tired every Mother’s Day, the women who’ve chosen to not have children write blog posts or news articles defending their decision. Well, I like reading these pieces, it makes me feel like less of a freak for my own stance. I just hate the way these things pop up every May in an almost defensive “I chose not to have children and that’s ok, I’m not just some sad, unfulfilled woman crying this whole day” way that irks me. I used to think not having kids was a normal, logical choice for myself. With each passing year, I feel more and more as if I’m viewed as some kind of radical, sticking my middle finger up at society by not procreating. Well, yeah, I often am sticking up my middle finger, but in lots of ways for lots of reasons, not child related!

The other trigger is the focus on estrogen positive cancers, ignoring HER2 positives. I actually understand that a bit; only 20% are HER2 positive, so naturally most conversations or information about breast cancer will be about the majority, as maybe it should be. Come to think of it, I marvel at the invention of Herceptin. I cannot believe Big Pharma went out to make a drug for such a small part of a lucrative market (gonna have to read up on the history of that drug). But hey, that drug is the third top seller of all cancer drugs (see here), so I guess I shouldn’t feel bad for the poor ol’ drug companies (YES, being VERY sarcastic). I imagine the sophisticated marketing plan discussion for the drug boiled down to “hey we are only going to be able to get a portion of these desperate women (read breast cancer patients), I know, let’s charge the shit out the women who want this drug!”

But this morning I put myself in the shoes of women who had kids and got hit by cancer…especially estrogen positive cancer. Or wanted kids, and have been denied the chance to have them because of cancer. Or are indeed estrogen positive and chose not to have kids. How do these women feel? If any of these women interpreted the “Time” post the way I did, (that having a baby and breastfeeding it for a year is a way to prevent breast cancer, and if you got breast cancer because you didn’t do this you deserve it, and you’ve put a burden on public health), what must these women feel? If you are such a woman, reading this, I welcome comments (to me, to others, have a conversation here if you want, let loose, I LOVE that). I hesitate to speak for any such woman. I’ve done so before (here), in putting myself in the shoes of those who get so-called unnecessary mastectomies, because I can understand it, although I got the “approved” lumpectomy instead. (Still cannot believe I did that, I fall into so many small percentages regarding cancer, I don’t think the “low probability of breast cancer returning in same or other breast” as doctors like to yammer on about can actually apply to me. I had less than half a percent of a chance of getting cancer before 40 and I did, so you over there with your low stats bullshit, bite me.)

So thoughts on this topic—let ‘em rip, because I want to know. And thanks Cancer In My Thirties, for making me view it another way!

In the meantime, my challenge to the two doctors (Dr. Kathleen Marinelli, MD and Dr. Melissa C. Bartick, MD) quoted in the “Time” post regarding how breast cancer can be prevented by breast feeding: Good job on finding a prevention that many of us are so desperate for. Now, figure out a way to take that knowledge and turn it into another preventative method. Not every woman is cut out to be a mother, and they should not feel like not fulfilling their biological imperative will kill them.

Could Someone Explain It To Me?

Yet another Time magazine blog post claiming that breast feeding could save thousands from breast cancer.

How? Explain it to me, because I am a science idiot so I don’t get it. To the best of my understanding, the production of milk for babies has something to do with estrogen, which has something to do with, or not, in estrogen receptive cancer. Am I totally misunderstanding this?

I see this claim about having kids/breast feeding and the correlation to breast cancer every few months. This one was especially annoying in that it contained this: “What’s important is that it tells us that the cost of not providing support to women to optimally breast-feed their babies is astronomical because of the known health benefits to women. This points out that breast-feeding is not a lifestyle choice; it’s a public health imperative.” (So says Dr. Kathleen Marinelli.)

So I am not doing my part for public health by choosing to ignore my biological imperative (I never wanted kids), and not breast feeding. So my cancer is my fault and I’ve placed undue burden on public health. Yes, I get that she was probably saying those words to make employers understand that leave time (or whatever) needs to be provided for nursing mothers. I have no objection to that. And I probably should not complain, I’m in the minority (again). I’m just so tired of seeing this kind of headline, with an article that contains NO explanation of how breast cancer is linked to breast feeding. (I had to resort to Google, keep reading.)

I was estrogen and progesterone negative, HER2 positive. How does that have to do with not breast feeding? When I Googled “how does breast feeding prevent breast cancer” the first (non-ad-related) article that comes up is Dr. Weil saying “breastfeeding does appear to protect against breast cancer, probably by affecting levels of estrogen in a woman’s body”. My cancer had nothing to do with estrogen. Hell, I’m still on birth control pills!  

The paranoid side of me wants to see a conspiracy in this constant stream of encouragement to reproduce and do as nature intended (breed & breast feed). Not everyone wants kids. And it’s not like there is a shortage or something.

Does it bother no one that I would be the reincarnation of Joan Crawford? That I am the definition of an unfit mother? I made a rational, informed, modern choice to not have children, and it was the correct one. And breast cancer is NOT my punishment for this correct choice.

I know, I know. This article was not directed at me personally. But they seem to be so frequent, when I am least expecting them. It is not as if I am seeking them out. I follow/subscribe to blogs about health, and breast cancer specifically. I do this looking for any shred of hope of protecting myself from going through cancer again. And this is what I get for that.

Please. Stop. Blaming. Patients. For. Getting. Breast. Cancer.

Ken Burns to Produce PBS Doc ‘The Emperor of All Maladies,’ Aims to Create a National Conversation About Cancer

Ken Burns to Produce PBS Doc ‘The Emperor of All Maladies,’ Aims to Create a National Conversation About Cancer

Excited about this.

Vanilla Ice Lives Rent Free In My Brain Even Under Pressure

source: icanhascheezburger
source: icanhascheezburger

This post is a bit of a goof, some will find it funny like I do, but I promise it is all true…for better or worse! This IS my life and how I live it. 

In the summer of 1989, I had just graduated high school and was trying to enjoy some free time NOT learning anything before going to college. But when I saw “Indiana Jones and the Holy Grail” that summer, I inadvertently learned a lesson I did not know would help me later in life when I got cancer. There is a scene in which Indy asks his father about the clues the father collected all his life to identify the location of the Holy Grail. Indy is shocked that his father, the foremost Grail expert in the world, cannot remember any of the details written in this book of collected clues, which of course has fallen into enemy hands. The senior Dr. Jones says something like “that’s why I wrote it down in the book, so I wouldn’t have to remember!”

For the already scattered mind, chemo brain is a bitch. By nature, before cancer, I was always dealing with a short attention span (think that stupid t-shirt that says something like “I do not have ADD….oh look a bunny,” yeah, I’m actually like that). Things like having a crawl on the bottom of the screen telling one news story while a talking head yammers on about something else, or OMG, the interwebz and its constant distractions, just don’t help. I’m sure many people, who’ve never even had to deal with cancer, get overwhelmed or over-saturated at least, with too much information to clog up the mind, because we are just having so much useless crapola fired at us all the time.

Post chemo, it’s like my brain is a net with very large holes, and only the really big tuna stays in there. Even worse, I suspect it erased some items that were formerly ensconced in my brain, and had been for years. I recently had lunch with a friend, a good friend, I was her maid of honor in fact…and she began recounting a certain drama that unfolded during her wedding back in 2000. Once she began giving me the details, sentence by sentence, I started to remember the drama, I remember calming her down during it, but I could not provide any of the details of it myself while we had this conversation. With each new detail she revealed, I went “oh yeah, that did happen,” like a lunatic or someone who just agrees a lot.

So I’ve adopted the methods of the senior Dr. Jones, and I write new pieces (of important) information down. My only obstacle nowadays is, of course, where did I write it down? Computer? Phone? Sticky note stuck to who knows what? Well, practice makes perfect, and I am perfecting the art of herding all of my Things Not To Forget notes into corrals of like items, where I can find them again later. And I’m still learning to never fall for it when I say to myself, “oh I’ll remember that!” I cannot even guess how many times I thought “I need milk, I’m going to the store, and will get it then, I’ll remember, no need to put it on the list.” Only to get to the store, buy ONLY the items on my list, get back home, and rediscover I have no milk. Then I kick myself, remembering and realizing the exact moment I should’ve written it down. I confess, I still sometimes fall into the “oh I’ll remember something so important, no need to write it down” trap, and get a cruel reminder each time: no, I won’t.

But I think I also subconsciously developed a system of retaining, examining, and then deleting information. For example, I recently signed up for a few breast cancer studies via Dr. Susan Loves’ Army of Women. I went through steps, including answering a set of questions to make sure I matched the criteria some weeks ago, and yesterday went to get the blood drawn for the study. I was asked many questions by those at the facility about the test (mostly to make sure that neither I nor my insurance would be billed for the procedure). As I struggled to answer the questions, I realized I had mentally discarded the info having to do with how I qualified for the study. Once I qualified, I thought I no longer needed it, I did not allow it clutter up my brain. I did not say this to the person asking questions, but quietly congratulated myself for only allowing just the necessary items to be in my brain (the info I was being asked was not really that needed–they just needed to stick me with a needle and fill tubes with my blood for pete’s sake), so I can at least try to function without being overwhelmed each day.

Here’s the catch, and the story behind the title of this post: I seem only able to delete certain pieces of information. How do I know this? Because anytime I hear the opening bars to that slightly-different-from-the-superior-Queen/Bowie-song, out of my mouth flies these words:

All right stop, Collaborate and listen
Ice is back with my brand new invention
Something grabs a hold of me tightly
Then I flow like a harpoon daily and nightly
Will it ever stop? Yo — I don’t know

Now, if ever there was an example of retaining unnecessary information, this is it. I’d even go so far as to say that I wish I could delete all song lyrics just to make room for important things, especially health info, so I would not have to repeatedly look up, well, most everything. I’m a major music fan, so maybe deleting all song lyrics from my brain is drastic; but good grief, Vanilla Ice’s “Ice Ice Baby” is one I retain? Really?! My inner punk rock girl is embarrassed. But on the other hand, the good news is I still know all of “London Calling”  by The Clash as well.

A few years ago, Vanilla Ice was on MTV or VH-1, and he symbolically smashed a copy of the video for “Ice Ice Baby” so it would never be shown again. He shouldn’t have wasted his energy. His legacy, in the form of this ridiculous song, lives on in my chemo addled brain. Cancer took so much from me, but this, THIS, I still have. What will happen if I am lucky enough to avoid more cancer? In another 40 years, will I be in a senior home, possibly with memory loss resulting from old age, maybe even dementia, singing this song? Will I maybe not really have dementia, but the nursing home staff will think I do, simply because I can recite those lyrics? Can’t say I’d blame them, if I went around saying “All right stop, Collaborate and listen,” I’d think me demented too.

BTW, I should now mention that the reason why this music snob-alterna-grunge-girl knows “Ice Ice Baby”. My friend, the one mentioned above whose wedding I’ve forgotten much of, is still a big fan and loved, Loved, LOVED that song. Sometimes you learn stuff you’d rather not!

So perhaps I should find peace with this stupidly selective memory of mine. So what if I cannot remember every day/time of my cancer appointments, I can look it up. I was advised at diagnosis to keep a binder of all my cancer-related info, and I did. Lists of family history, of all drugs, dates of treatment, it’s all in the in the binder. I don’t carry it everywhere with me (trying to NOT be a cancer patient, even when others expect me to be one). So what if I don’t always get it right at the grocery store, I can go back and get what I forgot. I know the words to hundreds (dare I say more) of songs and I can sing along, and for me that is the best way I know how to keep the horror of cancer at bay.

And I wonder
When I sing along with you
If everything could ever feel this real forever
If anything could ever be this good again

“Everlong” by the Foo Fighters, lyrics by Dave Grohl, see more on him here

Ones and Zeros

You can almost see the Matrix, can't you? Source footage.shutterstock.com
You can almost see the Matrix, can’t you?
Source footage.shutterstock.com

I know that the battle cry of Komen and pink crap sellers, “1 in 8,” is a bit of a myth as it is relevant to lifetime risk, not just women of any (younger) age. I know this is misunderstood by many of those lucky enough to not reside in Cancerville. I see the point made by those who criticize Komen and pink crap pushers when pointing out the statistic is twisted to sell pink crap and fear; and from that fear mammograms and unnecessary procedures are sold as well. I get it, I do. It always irritates me that percentages, averages, majorities, stats, and just plain old concrete numbers are presented in a manipulative way in order to obfuscate facts to get people to spend money. Since this happens every day for every cause and/or product for which there is a stat, I am destined to live my life in a state of constant, mild irritation. No matter, I am always mildly irritated about something, I am a curmudgeon after all. Fuzzing over the facts to make money happens in every industry, why should the breast cancer industry be any different.

Make no mistake I am certainly in the criticizing-of-pink camp. And in theory, I agree with this criticism of the way 1 in 8 is presented. It is wrong to misrepresent the whole truth, even to get good will and funding for research. But deep in my gut, and my heart, I am irresolute.

Often in critiques of the misuse of the stat I see the analogy of a group of 8 women in a room, looking around at each other, wondering which one of them will get or has cancer, and for the 1 in 8 stat to be realistic, that room needs to be in a senior center, since it represents a lifetime of risk. A group of women in a college dorm room have less, some say nothing, to fear.

But here’s the thing: being just a few days shy of 39 when I was diagnosed, I am 1 in 233. No matter how many times you gather 233 women who are between 30 and 39, I never get to be one of the 232. I will always be “The One”. Insert random, lame Neo/The One/Keanu Reeves/”The Matrix” joke here.

source: mozillablog
source: mozillablog

The odds may be ever in the younger woman’s favor, which may seem like good news, but I can’t say it’s much fun being one of “The Ones”. Maybe I wish I really did live in the science fiction world of “The Matrix”. Hey Morpheus, which pill, the red one or the blue one, makes my reality cancer free?

Maybe this is my only child self-centeredness, my self-involved cancer patient orientation, or heck, just simple natural human instinct to be self-absorbed, but I do look at this through the lens of my own experience. And from where I’m standing, I got cancer when the odds said I shouldn’t, so I’m not sure I could be very convincing in telling any roomful of 39 year olds (233 of them) not to buy into the deception of 1 in 8, because I am one horror story in 233.

Of course, that is not to say I’m in the “a mammogram saved my life” group, quite the opposite in fact (read my About page), for me mammography is next to useless. I won’t be giving any cancer advice in a peer program anytime soon, since I do not toe the pink line. As stated above, I am squarely in anti-pinkwashing group. Maybe the worst/best/most interesting piece of this is that the 1 in 8 slogan may be pinkwashing’s undoing. Willful deception by not being transparent and completely honest will just cause an unpleasant backlash if people ever pay enough attention to become wise to the true nature of the statistics. That is just ONE simple reason non-profits need to be above reproach. Furthermore, if pink marketing is still pointing to such a devastating statistic as an argument that more fundraising is needed, at what point will people begin to question, “hey we’ve given all this money and the stats have not decreased, and there is no progress?” When will it become a lost cause? When that happens, will the fundraising income dry up?

I once read a comment or tidbit that researchers and number crunchers cannot think about the people the statistics represent. Again, in theory I understand that, but as a person who IS a statistic, I don’t. I’ve mentioned this before (here), just because a disease impacts more people, does not make it more important to those impacted by the rarer disease, a lower statistic. While doing research and potentially making a breakthrough in diseases (and types or strains of diseases) that affect the many rather than the few may get more money and glory, but so little changes for the few who represent all the ones out of the bigger numbers.

But ultimately, maybe I just don’t care if any cancer patient—of any age—is 1 in 8 or 1 in 1,000,000. How about changing all the 1s to 0s? Isn’t that the goal, what we all want?

The Other Other Language of Cancer

There was a great post some time ago on Nancy’s Point called Tiptoeing Through Survivorship which, in conjunction with some other random posts made me think about a small aspect of living in the shadow of cancer. Most of the post and discussion had to do with fear of recurrence, that gut feeling that we’re never really done with cancer, even after whatever number of years out of treatment. Recurrence is certainly one of my biggest fears, but as I read the post I realized I had a bigger problem: after being about two and half years out from my diagnosis and a little over a year after completing treatment, I still feel like I am under the yoke of it, still somehow a patient.

Trying to sort out this odd feeling in my gut, I had to think hard about why I feel so unsettled and unfinished. I realize it has to do with my interaction with my oncologist. I’m not picking on him, or the others at the cancer center, exactly. I’ve mentioned before that I still do not know what to call myself. I agree with what I’ve seen on tons of other blogs: I cannot be a breast cancer survivor until I die of something else (not really looking forward to that). Having that view reveals that I fear or expect cancer to come back, especially since it seems to happen quite a bit (damn the stats, I’m just thinking about all the people I know IRL and that I read to which this has happened, and each one is one too many).

I continue to call myself a patient, because I find I am still treated as one. It irks me that every six months I get a list of appointments, without any warning or consultation, or maybe just a simple “hey you need this, this, and this, shall we schedule for you?” Every six months I fall down that rabbit hole again, in which the cancer center takes over. That was fine at the time of diagnosis, I was too overwhelmed to do it myself, had no idea what I was doing, and was lucky enough to take time off to start dealing with cancer, since it was going to consume much of my life at that point, so when I had to be where did not matter. But now I am an informed patient, almost a professional at it. I get unsettled because there is an overall “you can beat cancer and move forward with your life” air, which is great in its positivity, but in my view, is the opposite of how I perceive what is actually taking place: that I am still viewed as a patient whose cancer, treatment and health must be managed by the center, not me.  I’m trying to move forward, and trying not to be a patient anymore. And I have lots of bills to pay and being self-employed, I need to manage and be in charge of every aspect of my personal schedule, since professionally I need to be flexible for my clients—because that is how I get paid, so I can pay the doctor, hello! It’s not really a big deal, I can change the appointments, it is the way the pre-scheduled appointments just appear in the mail, like a command, that bugs me.

But scheduling conflicts are not even the worst of it. It is because of another word in cancer language that has never been used with/to me. I’m not talking about the battle language of cancer, which I dislike, or the dumb stuff people say to patients. I’m talking about the word remission.

Not once has this word been said to me. I hear it coming out the mouths of other cancer patients, or I read it loud and proud on other blog posts—the minute they get that last treatment, I see blog posts screaming “I’m in remission.”

Now, I don’t expect to ever hear the word “cured,” in fact my oncologist has said he would never say that because there is always that risk, however small, that it will return. He thinks it highly unlikely to return (but then I think about all the times I fell outside the stats). I appreciate his honesty; I don’t need him blowing sunshine up my ass. I’ve waited for him to say the word remission, but it hasn’t happened. I’ve never asked, always holding my breath during my examination, waiting for the dreaded words about seeing something that looks or feels wrong. I’m too happy to not hear those words so I just forget to ask if I am in remission.

It is not until later, when I see at random a celebratory post that I realize this lack in  my life, and frankly I get jealous. Even though I’m a curmudgeon, I’d like to have a little something to celebrate. Or at least a definitive end to this round.

My six month check-in is coming up. Damn right remission is on the list of topics that need discussion. Geez, do I have to wait until I’m at that magic five year mark?

Preemptive Strike

So a week after the Big Announcement I see a blurb about how mothers likely to get post-partum depression can be identified by genetic markers. No mention in the blurb of how to prevent it (I guess not having kids). Of course, any prevention would be dangerous to the fetus I’m sure, so prevention is probably out of the question. Perhaps the treatments currently in place are not a big deal (but I doubt it), don’t know, never been pregnant, and never will, not going to look further into it.

It was the way the information was presented that irked me. Perhaps it is the way, and the amount, and the types of information I consume these days. It’s like science is going “hey look, we can tell you this horrible thing is going to happen to you!” Uh, thanks? It’s like going to the world’s worst psychic, hearing about your impending doom, yet the psychic is pleased with himself for being able to see the future in the cards or crystal ball. He’s an expert at what he does, you should be happy you know your future, what’s the matter with you?

Not saying science or gene research is stupid and should be stopped, I just wish other searches in science were keeping up, so the impending doom can be averted. If you could know the date and nature of your end, do you want to know it? Ugh, forget it, I’m too tired to get into some deep, meaningful, philosophical discussion—I just want to stop my cancer from coming back.

It almost no longer matters to me if they identify the gene mutation that caused my cancer. For starters, I already have cancer, so I can only prevent more cancer. And then for those who don’t have cancer yet, the prevention offered in a word, sucks.

I KNOW I’m not the only one who thinks options like preventative mastectomy and Tamoxifen prescriptions are awful. Why are they awful? Because they are cancer treatments, and treatment sucks. Seems to me a perk of prevention of cancer should, ya know, be the avoidance of treatment.

Is it just me, or are preventative mastectomy and preventative Tamoxifen regimens preemptive strikes masquerading as prevention?

I want something else.

Breast Cancer Riot

random find

“Takes a teen age riot to get me out of bed right now”

-From “Teenage Riot” by Sonic Youth, song released in 1988

A/N I started this post a couple of weeks ago and life kept interfering. But I kept randomly adding stuff to and it became a long beast. What got me to finish was a bit of strange synchronicity. I based the title on that song that imagines king slacker J Masics of Dinosaur Jr. as an alterna-president. Last Saturday night I was delighted when Masics and Kim Gordon of Sonic Youth made an unannounced appearance on SNL, in the very tasteful goodbye performance of a departing cast member. It reminded me, hey I need to finish that thing I started.

Reflecting on a few posts regarding the fall-out from that infamous 64%, I started thinking about the challenges of getting the public (as in, those who are lucky enough to not have cancer) to understand some truths about breast cancer, which have been made pretty and untrue by the pink machine, and the media’s inability to get facts right. Dissatisfaction with pink is starting to spread, but the truth is not out there, no matter what Agent Mulder thinks. It is often acknowledged that most people do not want to hear the unpleasant and/or abstract truths. In some comments on other blogs I seem to remember (not sure where, sorry!), someone suggested anarchy (cue the Sex Pistols song getting stuck in my head) as a method for making people pay attention, or hell, even just stopping traffic at an intersection. But anarchy, rioting, and heaven forbid, stopping traffic, would just be viewed as an unpleasant interruption in the public’s daily lives, thus making the masses even more unwilling to hear an unpleasant truth.

Still, I think it is worth it to at least stage a mini or pseudo riot. Maybe a mini riot is what it takes to make the facts more clear. There is so much misinformation out there, it is overwhelming. But driving me craziest lately is the misinformation/misdirection that early detection is somehow equal to prevention. (Yes I’ve already ranted about it before, not just a breast cancer issue). Mammography, a detection tool, is sold as the best defense in that “war” on breast cancer. And people believe it. To paraphrase the late Barbara Brenner in “Pink Ribbons, Inc.”: selling mammography was done too well, so that some women got cancer and confusedly said “but I got my mammogram,” upon hearing their diagnosis, like that mammogram should have protected them against cancer.

There is much animosity toward Komen, and I certainly agree with it, but they aren’t the only culprits. Take the Keep A Breast Foundation….please! They are the ones behind the “I ♥ boobies” bracelets, and according to their website, their whole mission is about education and awareness. This is the great fallacy of most of these organizations. Educate and make me aware of what exactly? That breast cancer exists, that many people will get it? What all these cutesy slogans and stupid products sell is that early detection is the only way to protect oneself. But they fail, egregiously, in telling the public that if that sacred and revered tool—mammogram—actually detects cancer, it is quite likely that breasts will be removed either completely or partially. So much for keeping any breasts. If you’re going to call your organization keep a breast, the singular goal should be research into how to prevent the ways in which tumors get in there and cause, duh, the loss of breasts.

And then there is the Save the Ta-tas stickers and foundation. Yeah, yeah I know, “save the ta-tas” is just a slogan to bring awareness to breast cancer, proceeds go to research that saved your life so stop your whining, you ungrateful breast cancer patient, blah blah blah. But that is NOT what the slogan says. The sticker says only that ta-tas are to be saved, not lives. Always read exactly what something says. When it came to naming their organization, they chose poorly.

A quick (not in depth) look at the Save the Ta-tas Foundation website shows a few admirable points—they donate from gross not profit, and understand they are a marketing or brand organization, not scientists. So on that score, the money goes through a series of hoops and winds up going to the Concern Foundation which disseminates the money to various researchers. Or at least, I went through a series of mouse clicks to try to follow the money (these things are always better at asking the reader for money than telling them what happens to it once pried out of donor hands). The best I can tell (this is lots of clicking; the url says savethetatas, but the actual page isn’t specific about breasts, or perhaps that was a few more clicks away), the grant recipients work on all kinds of cancer, and not strictly in preventative measures, but all kinds of treatments. That is a good thing—all stages and preventative measures should be researched on all kinds of cancers (silly me, I want all cancer cured and prevented…I want the world and I want it now). But how does it save any ta-tas, specifically? I keep reading about the increase in preventative mastectomy, so looks like even less tat-tas are getting saved than ever, even with the alleged progress in science. Save the Ta-tas, you FAILED. It isn’t the truth that bothers me, it was the being lied to in the first place.

I recently complained about a couple of editorials implying that the National Breast Cancer Coalition’s 2020 Deadline should focus on non-breast cancer disease, and whadya know, if I’m reading the Save the Ta-tas Foundation site right, here is one way breast cancer and the pink ribbon is helping other cancer issues: money from ta-ta t-shirt sales goes to this Concern Foundation, and I cannot see that the money is specifically earmarked for breast research; so I assume it is funneled into all the cancer projects. So pink is helping other cancers by the sexualization of breast cancer. While organizations devoted to raising awareness about various other cancers may be trying to imitate the success of pink, they lack the thing that makes selling breast cancer awareness so successful: paraphrasing Brenner in “Pink Ribbons, Inc.” again, with breast cancer, society gets to talk about boobies. I hope folks who defend Brinker, saying CEOs work so hard, remember that she has what all corporations need in the first place, desirable product.

Before anyone begins to howl at me for picking on Save the Ta-tas and Keep a Breast, and for not doing my homework: yeah, kind of the point. Those “save the ta-tas” stickers and boobies bracelets are everywhere. Don’t get so well-known and expect all love, no haters. I’ve always hated them and it was torture to visit their sites; I’d studiously avoided them prior to this. I picked on those two because of the offensiveness of the products, and the visibility. But they are hardly the only ones I could pick on. There are tons of examples of pink deception. My favorite local example? A car wash that advertised one October that in honor of breast cancer awareness month, all ladies got $2 off the price of a car wash; no mention that the $2 would go to any particular organization to help anyone with actual breast cancer; also kind of a nice “fuck you” to men with breast cancer, huh? I don’t have to point out the numerous problems with this do I? And as for not doing lots of hard research on the organizations I picked on, again, that’s the point. I only did what any cancer industry consumer can do, and probably more than most consumers bother to do. No, most folks just buy the pink plastic crap, utilize the service that purports to support breast cancer charity, and blindly think they are helping.

So, getting back to the proposal of this post–why isn’t there more active rioting against the pink. Or at the very least, a cohesive movement that gives a disgruntled soul like myself an alternate to pink. I have a secret fantasy every time I see one of those “save the ta-tas” stickers on a car. I wanna grab a sticky note and write “how about saving my life? –signed, a breast cancer patient who lost part of her breast”, and I could then stick it to the car. I think this comes from spending too much time on funny websites featuring notes people leave on cars admonishing the cars’ owners for offenses like bad parking, blocking other cars in, etc. I don’t think it is illegal exactly, but one could probably get into some sort of trouble for touching other people’s cars, if caught. Or maybe in light of the 64% increase in salary, I can go around to those Walk/Race for the Cure posters, and write on my sticky notes, “salary” and stick it over the word “cure”, that would be ok, right?

asspark

I wanna rebel against pink culture, in a way other than ranting in (ahem) my overly wordy posts that are too exasperating to read. I want something as attention-getting as those ta-ta stickers. I want to get the truth out there. And it needs to be short phrases (not a talent I possess), able to change minds in a split second, because no one bothers to read/listen long enough to get the whole story, or if they do, they are unlikely to pay enough attention to get the facts.

In “The Birdcage”, Senator Kevin Keeley (Gene Hackman), said to his wife, “Louise, people in this country aren’t interested in details. They don’t even trust details. The only thing they trust is headlines.” That says it all, doesn’t it? Seventeen years later and the line is still very true. People misconstrue words or fail to listen completely all the time. Flashback to the 80s with me won’t you? Remember when Regan wanted to use “Born In the USA” on the campaign trail until he got clued in that with the song The Boss was not exactly giving a proper salute to the red, white, and blue?  R. E. M.’s first ever Top 40 hit had the lyric “This one goes out to the one I love,” and girls were so busy cooing over that line they failed to hear the next one in which Michael Stipe called his lover “a simple prop to occupy my time”. Yikes, Michael (don’t hate on me, I love that band, seeing them live was one of the best days of my life).

Is it any wonder one of the biggest songs of the 90s, “Baby Got Back”, was much more straightforward? “I like big butts and I cannot lie”. Thank you Sir Mix-A-Lot, for giving us the clearest, most honest song of all time! (For the record I’m not being my usual sarcastic self here—I actually think it is a clever song, despite the objectifying.)

So, short of getting Sir Mix-A-Lot’s help in designing a slogan, song, or campaign, what can be done?

Pretty sure my sticky note idea is not the solution. As stated earlier in this over-long post, I think the time is ripe to motivate the growing numbers of those disenchanted by pink.

“I wanna keep my breasts, Mammogram is a lie/You other sisters can’t deny…”