Restraint

 

“OMG I’m gonna stick a sign saying ‘Oh yeah, when?’ on their marquee, because they are NEVER gonna open!”

What caused my childish outburst a few weeks ago? A fresh fish store that was supposed to (re?)open this summer, and failed. All summer long the owners put little phrases on the sign in their parking lot near RT 1. Stuff like “We swear we’re opening soon,” or “Summer 2016!” It was October and the new fish market was so NOT open.

Of course I was being silly–I work in a resort area, I was driving my Lyme patient to a medical appointment on RT 1 which runs parallel to the Atlantic, and there’s a fish market like every two minutes. In short, I got choices and NO reason to get so annoyed about one silly place—other than I saw the sign nearly every damn day.

It was just that the constant sign updates annoyed me. I wanted to challenge their little missives about opening soon. And I wanted to do it right on the lying signs rather than making a bitchy Facebook post that would not matter to the majority of my FB friends. My why-aren’t-you-open challenge needed to be right in their face, in everyone’s faces, as they motor down the highway!

My fuss about signs one sees while driving on the road triggered a mild discomfort in my Lyme patient. She’s a staunch anti-Trump liberal, as am I, though at that moment it wasn’t my big problem. With my crazed outburst we again, for like the millionth time, talked about how wrong and illegal it would be to mess with Trump/Pence signs in residents’ yards. And as I’ve stated many times, I live in a rural, red, area–so those signs were just everywhere. We talked about, again, how wrong it is to violate personal property or at least stuff on personal property.

All this made me have a small flashback to my early blogging/post-treatment days. I’m sure I’ve made some offhand remarks on my blog here (and elsewhere) about my desire to just either pull off or deface any of the pink ribbon/rah rah/find-the-cure ribbons I saw on cars. I thought it would be great if some covering/addendum sticker with a message would get created. Like a “what about the women’s lives” sticker I could stick next to those damn “Save the ta-tas” stickers. But duh, again, personal property. So I practiced, and still practice, restraint.

I am “mostly” beyond that now. I’ve written about the wince-inducing run-ins with the stickers tho’ (see 365). I still have to work at suppressing the urge to deface those stickers, but it is less difficult.

I’ve had to work harder at restraint to not deface the Trump/Pence signs, especially when I see that others have already done the work—rare in this rural red area in which live and work (the states in which I live and work, Maryland and Delaware respectively, were blue on the maps, but only because of the metro areas, not the Delmarva section where I am).

Yes, I’ve tried to restrain myself from talking politics on this blog (as mentioned in my first 15 Things). I will continue to do so, but it will be more difficult. You see, with my cancer, my health, and my economic situation—the personal, the cancer personal, has become political.

I’ve shared very little of my economic situation here because I don’t think it is anyone’s fucking business but mine. Suffice to say as a self-employed, VERY small-business woman, I don’t make a great deal of money and rely on those subsidies. I was happy when Trump was the candidate because I thought with his outrageousness, he would never be elected. Good, I did not want Republicans with their constant tries to repeal the ACA, in power. See, it isn’t just him that is scary; it’s Paul Ryan and all the other creeps.

And here we are, and ACA is likely on the chopping block. I’ve read all the think pieces, listened to all the whiny podcasts about “what went wrong” and “what can we expect”. I’ve no faith in the “replace” end of the headlines. I still have fear. I face financial disaster. If I experience recurrence, I cannot afford much; I am of the mind to just not try any treatment. Why leave my parents in a debt they could never re-pay? These are the terms in which I think now.

I’ve been depressed since the election. I can tell. I see something that would normally interest me and think, “WTF does it matter now?” I have no sense of humor or fun. I care about very little. Lately I’ve begun to force myself to engage a little, get out of my head. But my anger and hurt is still so, so great.

On November 9 I wrote a very awful post that obviously I did not publish. It was filled with the blackness that still threatens to fill my heart. Let’s just the say the calls for reconciliation of our nation, the calls to listen to each other rather than shout, that shit don’t reach me. I’ve lived my whole life among the type of voter that the liberal elites are trying to finally understand now and I know they won’t listen or care. Unless my kind of disaster happens to them, and even then, they might still not “get it”.  So my empathy is at an all-time low right now. Of course, as you can tell from that statement, I am just as unforgiving of the “liberal elite” as well. I wanted to spit nails at Garrison Keillor’s post-election WaPo essay with the “let them (the poor WWC in flyover country who voted against their interest and might not get what they bargained for here) lie in the bed they made” attitude (please tell me it was satire). I get the point, but I lie in the bed too—and the bed is not of my making.

Perhaps I was a fool—the personal was always political and I was silly for thinking I could keep it all separate. I don’t know. I will try to practice restraint when it comes to politics here on this blog and on other social media. But I make no promises.

 

 

 

A Cautionary Awareness Tale

On October 31, as I distracted myself with Halloween’s glory, I asked myself: “what do we become aware of this month?” Lots of Facebook posts ask that question, I asked it on Twitter I think. So much sound and fury in October, but does anyone learn anything? I think not.

I forced myself to remember the days before diagnosis. I know I never thought all the pink rah rah crap was great–that’s just a core trait of my personality. But what did I know about breast cancer, and the awareness push, before diagnoses?

This is a tough question to answer. I’m not sure I fully know the answer. I know I absorbed the “early diagnosis/screening” messages. I knew enough to ask for a mammogram earlier that the suggested age (40 at that time), but I still regarded breast cancer, any cancer, as an older person’s disease despite knowing actual patients my age. I asked for a mammogram because I knew I had a higher risk with family history-my aunt had just been diagnosed for heaven’s sake. I knew about ribbons, especially red ribbons (AIDS) and pink ribbons. Did I know October was “awareness” month? Maybe–but it did not “click” with me until the late 00’s.

The incident that made it click with me–well, I’d buried it. I was working in for a non-profit arts organization. Doing film exhibition with local community organizations. In the summer of 2008 or 2009 I began working with a women’s business group. My point collaboration person was suggesting topics for me to find films for our October event. I remember her telling me October was Breast Cancer Awareness Month.

I remember being surprised by that–what a dumb month for such a thing! Let me explain. As a lifelong resident of a beach town/resort area, with my first post-college job being in retail, I had a list of hard and fast rules and truths. Painting October Pink was stupid in my mind. Lots of local “runs” took place in April/May/June anyway–wasn’t spring better for Pink? I’ve lived my life by the ebb and flow of tourist traffic. Panel season, or off-season, events were in a strict path. There was the Greyhound rescue dog weekend, Jazzfest weekend, Seawitch, etc. in October. Where I worked, the annual film festival was the second weekend of November. I had no time for anything else–October was full of deadlines in preparation for this main event–a time of no sleep, no fun, no nothing. I measured these things in amounts of car traffic (for my work travel) and the likelihood of whether I could schedule an event and get any butts in seats during those event weekends (likely not). BCAM had maybe a marathon in one beach town–but there was always a marathon each weekend (bikes the worst, as they interrupted traffic the most, adding to my work travel time). I had no time for breast cancer, awareness, or a month of it . But sure, if I could find cheap film to exhibit about it, I’d see what I could do (this was before the release of Pink Ribbons, Inc.).

I don’t remember what films I exhibited–none about cancer I’m relatively certain. I moved on, forgot about this, got cancer, and now I remember it.

But here is the other thing I’d submerged, and am just now dredging up–a sort of painful memory.

I skipped the main event in 2010, having just been diagnosed, and preparing for the Red Devil. In 2011, I returned, managing over 1,000 volunteers for the annual festival, among other things. I had completed chemo in January of that year, radiation in the summer. I was still doing Herceptin every 3 weeks and my hair was curly and short–just returning. I was exhausted and felt horrible. I ran into the women I’d coordinated with for that event of a few years prior. She laughed and asked why I’d cut my hair so short (I’ve always worn it long). “I had cancer,” I replied curtly. She laughed for half a second then sobered up when she saw I was NOT laughing. “Breast cancer?” she asked. “Yeah,” I grunted.

So here was this person, so into “The Cause” but what did she really know about breast cancer? Breast cancer was a thing to worry about–but a thing that happened to other people–not ones we knew, not ourselves. Breast cancer was a thing to promote because an audience “cared” about it. But not “real”.

I realize now how much this informed my view of BCAM–this ignorance. It’s something to care about, to SHOW care about, but it always happens to someone else.

Until.

This is likely part of my disconnect with such hollow shows of “solidarity” of “Support”. Those things are meaningless to me.  The Pink events–they have little to do with What Really Happens.

I hold no ill will toward this woman–how could I? I was just as ignorant, just as “that won’t happen to me.” I don’t even remember her name, or the organization, and don’t feel motivated to research it. It doesn’t matter. It was just a memory that popped up Monday, unwanted, as I tried to get ready for tricks or treats.

My point is: October and BCAM, those are just “things to do”, the way we do other “holiday” things: buy candy for trick or treaters, buy a turkey and fret about ignorant relatives, succumb to shopping holiday madness, and make the obligatory weight loss New Year’s resolution.

And that is what I hate about October as Breast Cancer Awareness Month: it has become a rote obligatory motion we go through–not real.  Except to those of us who had the dumb fortune to get breast cancer.

And this is what needs to change.

 

Unnecessarily Pink

My entry into the #WhyIsThisPink fray is a bit different but important to me. I get that most submissions are the silly, pinkwashed items created simply to fatten the bottom line of corporations using the color to get some goodwill from mostly female shoppers. So why have I chosen to submit here a picture of the cancer center where I was treated, all aglow from the soft pink light shining on it for the month of October?

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I’ve ranted about this in What Do You Mean There Are OTHER Kinds of Cancer Besides Breast?!–three (3!) years ago (but this picture was taken only a few days ago). Here is what I said about it then:

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.

I still hold the same opinion. Yes, businesses selling alcohol, deli meats, and cosmetics (all things that might increase cancer risk), are worthy of calling out. But a cancer center bathed in pink light–a center that does NOT use other colored lights in other months–is far worse to me.

No, I’m not flirting with conspiracy theory here–this isn’t some Big Pharma/Medical Industry-is-withholding-the-cure-because-it’s-more-lucrative-to-keep-cancer-patients-in-treatment tinfoil hat kind of thing. I revisit the medical industry ethics as I’ve done before in Medical Obligations and SELL!. It is important to keep in mind how hospitals/cancer treatment centers sell their services with some of those questionable messages: “your cancer can be an opportunity for personal growth”. Or the how the existence of breast care ONLY facilities make breast cancer a proxy for all of women’s health, when we all know heart disease is the actual number one killer of women, with lung cancer coming in at number two. Medical institutions emphasizing breast care to play into fears of women rather than correcting those fears (to get their money?) is tantamount to medical misinformation. And the result in me is even more mistrust than I already had.

I’m aware some medical professionals object to being called health care providers, insisting they are not mere service providers. But I think it is important for people (especially in the US) to keep in mind that we do indeed purchase care, and it is costly. To remove the monetary element, as if talking about money is somehow gouache when it’s about “saving lives”, this is just wrong. Patients and “providers” alike need to get over it. For me at least, the financial aspect of cancer is a big part of the ongoing stress of cancer.

And I reiterate, a pink light on a cancer treatment center just screams out to me this message: so many women, so much breast cancer, let’s lure them here, we need those customers, whoops, we mean patients. Always remember, we are both of those.

That’s the money side, the pink-for-profit side, of my entry into #WhyIsThisPink. But of course I have more.

What really bothers me about a pink-lit cancer center is that it reinforces how Pink has become such a Godzilla that all other cancer patients are feeling ignored and angrier with each passing year. I’ve noticed an increase this year (keep in mind this is just my perception here) of angry reactions when we criticize the perky Pink. Or even in pieces that do NOT criticize Pink, but rather embrace it. “What about X cancer?” inevitably pops up.

I can understand this anger to a point. As I stated in the above referenced blog post:

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.

I can understand how ungrateful we must sound when we criticize all the Pink crap. But my understanding of this has developed a limit. (For starters, I again refer to Burden of Gratitude.) The other day I actually saw someone ask in a comments section “why does breast cancer get all the attention?” Really? The concept that there is no such thing as a dumb question is a lie–THAT is a dumb question. Breast cancer gets all the attention because sex sells, and well, boobies. Anyone who does not understand that clearly does not understand the concept of advertising and that is inexcusable in the 21st century. Grow up.

I’ve said before that awareness is a two way street. All the corporations and people drenched in Pink, making breast cancer sexy and cute in the name of “awareness” need to become AWARE of the unintended consequences, which is the impact on other cancers. That would be the resentment, the ill will that is now becoming apparent from advocates of other diseases. Yes, I realize not ALL advocates display this resentment, but it is there, and deserves acknowledgement. And it isn’t just the Pink pushers that should be mindful of what is going on. I have voiced before, and do so again, strenuously, that resorting to the comparison, the “what if everyone made X cancer sexy” is a tone deaf and insulting method. Some cancers/diseases are so ignored, that many would welcome ANY kind of attention. Just as it does for some members of the breast cancer community, the “any awareness is good awareness” point of view rules.

Now, of course, I think that viewpoint is wrong-headed.  I am merely acknowledging how tone deaf that particular comparison comes off when breast cancer patients, with our “first ribbon problems”, drag out the “let’s make X cancer sexy” cliche. But here’s the thing: I’ve seen so much in the way of knee-jerk reactions this year–and very little listening, very little effort to understand the many well thought out arguments we make. It is very easy for advocates to snap, “X cancer should be so lucky, look at all the money/attention breast cancer gets”. It is time for all awareness, not just breast cancer awareness to grow up, to become savvy. The issues of unjust fund allocation to metastatic breast cancer has been explained time and again. The issue of how so many businesses slap a pink ribbon on something and donate very little or even nothing, has be explained repeatedly. The theory that all this rah rah visibility has “cured” breast cancer so that it is a “good” cancer has been debunked thoroughly. Yet, these issues must be re-explained each October. And it seems rather than actually reading/listening/comprehending, all I see is knee-jerk reactions “stop biting the hand that feeds and pay attention to X disease.”

Maybe we ALL need to stop and take a breath and have some kind of discussion in which a side is presented and another side is not allowed to respond for a few minutes. That old adage about listening to respond rather than to understand, or that idea that 51% of communication is listening (NOT talking), these things are true. The problems with Pink are being explained, thoroughly, carefully. But we don’t seem to be getting anywhere.

I guess this is why I have not been able to write a post in a few weeks. It is difficult enough to explain The Way Things Are In Pink CancerLand during the year; in Pinktober it seems impossible.

I return to my #WhyIsThisPink submission of a cancer treatment center bathed in pink light–an insult to the patients with other cancers who are also treated there. We’ve got to move forward and evolve in all disease discussions. That pink light on a cancer treatment facility is blinding everyone. Turn it off.

 

Last Ditch Attempt at My Annual Campaign

Last year I wrote a goofy blog post with my fake campaign to get The Cure at least nominated for the Rock and Roll Hall of Fame. They were not nominated. This year’s nominations will likely be announced soon, maybe this week! I’ve been so busy with other stuff I nearly forgot to do my campaign. I think somewhere (probably Facebook) I vowed to re-work that blog post every year until either I quit this blog or The Cure actually get in.

Earlier this year I contacted the cartoonist to request permission to actually share the cartoon that inspired the blog post–and he so kindly granted it! So without further ado I update (but mostly just re-print) last year’s post.

My Different Cure Campaign This October

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

Cartoon used with permission of brilliant cartoonist Scott Hilburn.
Cartoon used with permission of brilliant cartoonist Scott Hilburn.

A few days ago I ran across this cartoon on Facebook and immediately shared on my Curmudgeon page.  I found the cartoon hilarious because when I first got cancer and phrases about racing, biking, whatnot for “the cure” infiltrated my life, I had to actively remind myself “the cure” was about cancer, not The Cure—the band I sooooo loved in my goth-teen phase. (And yes, I still listen to those great albums.)

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

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

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

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

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

Two Tweets Tie Today!

That’s right! We have a tie for our tweet that best captures the spirit of our October 1st #BreastCancerRealityCheck event! Twitter users @cattyfizzle  and @uneasykt wrote the winning tweets. Their winning tweets are:

A donation of  £113 GBP (or $146 USD at current exchange rate) will be made to METAvivor in @uneasykt’s name, and another donation of £113 GBP (or $146 USD at current exchange rate) will be made to Second Hope in @cattyfizzle’s name.

Needless to say, this was an extremely tough decision. @barbieslosingit and myself sifted through the nearly 1,000 tweets that went out last Saturday and whittled them down to a list of 12 for the 5 judges to vote upon. Took us a week, yes, but we did it! Kudos to our esteemed panel of judges: @Stickit2Stage4 @bccww@itsthebunk@abcdiagnosis, and @deedeesmiles4u.

The winning tweets felt most impactful, and we feel will likely resonate with most breast cancer patients. @uneasykt’s point about not knowing we are “cured” until we die of something else applies to all breast cancer patients whether we were diagnosed anywhere from Stage 0 to 4, regardless of recurrence status. And how many of us relate to @cattyfizzle’s graphic—I know I’ve personally elected to try falling asleep rather than falling apart!

Again, we thank everyone for tweeting last Saturday. We have been heard! That would NOT have happened without everyone’s wonderful participation. I could post an entry a day here on this blog and never adequately express enough gratitude.

Of course, since last Saturday, #BreastCancerRealityCheck has taken on a life of its own, and countless others have created even more tweets eloquently summing up our realities. We had no idea, back when this was a glimmer of an idea in those last sunny days of summer, that this idea would hit such a nerve (though now that I think about it, not sure why we didn’t suspect it—ha ha!). We must keep it up. The movements–#BreastCancerRealityCheck along with The Underbelly’s #WhyIsThisPink campaign, and others—are taking off and starting a conversation. Let us now attempt to keep it going, and to maybe get through to a few people whose minds are open.

Assumptions About Gratitude

I can tell given recent events I will revisit the thoughts in this post, but I am RE-blogging it until I have time to write a new post. For now, this is a big fat message to people who bitch about all these ungrateful breast cancer patients. I’d bet–and I am so NOT a gambling type–that I give the topic of gratitude a shit ton more thought than most.

Burden of Gratitude

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thank You All for Keeping It Real!

On behalf of @barbieslosingit, @bccww, @abcdiagnosis, @welliesandseaweed and myself: a big THANK YOU to everyone who participated in our #BreastCancerRealityCheck✅! Looks like the hashtag has gone viral!

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There were so many wonderful, REAL tweets that stood out, that revealed truths about your lives, our lives. As promised, on Saturday we will announce the tweet we think most captured the spirit of this reality check—and a donation to a breast cancer research organization will be made in that tweeter’s name.

But #BreastCancerRealityCheck is clearly resonating and more than just one day. Keep using it—keep telling the unvarnished truth—to offset the feel good stories that seem to glut the airwaves this time of year.

For those who do not know—the hashtag had a humble beginning. After Rebecca Wilkinson’s Facebook post went viral and gained attention across the Interwebz, I re-shared an old post of my own—How About a What Cancer Really Does to Breasts Day? Annie (@barbieslosingit) thought, good idea—but the hashtag is too long. Soon Jo (@abcdiagnosis) suggested #BreastCancerRealityCheck and with the help of @bccww and @welliesandseaweed, a plan for a day of getting the reality about breast cancer out there—in the form of pictures or just words—was formed.

We’ve all kept it real, and hope everyone continues to keep it real. Of course the hashtag invites some to assume we were talking about self-checking the “boobies”—one leering tweet in particular is burned into my memory, sadly—but for the most part, our strong voices drowned out that noise.

Now, let’s keep it up! Will be back in a couple days with the most spirited tweet!

 

Complaining, Commiserating, and….Convincing?

my_logoComplaining doesn’t change anything, only actions make change. Be the change you want to see in the world.

I see these types of phrases tossed around a bit in Pinktober. Last year seemed to me particularly harsh in terms of those folks who embrace Pink (breast cancer patients, relatives, and patients with other cancers who resent the attention breast cancer gets) harshly reacting to any criticism of Pink. We should just be grateful, or “do something” to change this Pink nonsense if we don’t like it, I often read.

I surprise no one by saying that many folks find change difficult. Even those who say they like it, often don’t actively change as much as they could (yours truly falls in that category more often than I’d like). Cultural change is especially hard, even harder when most of society thinks everything is hunky dory.

I confess when I began this blog nearly four years ago I was all fired up—I was so excited to see other blogs criticizing the dominant Pink narrative, I added my voice and I thought surely, SURELY, the general public would HEAR US and begin to SEE. Ah, so young at age 40, wasn’t I?

OK fine, at least I found others who understood, even if the world ignored us and kept right on pouring Pink all over everything. So this blog mostly became a place for me to complain, and I hoped a place for like-minded patients to read my thoughts and feel a bit less alone, and to say so. Complaining and commiserating, that’s the ticket.

That said, I’ve often taken it a bit personally when I’ve read blogs or essays or even comments critical of the backlash to Pink—a backlash to the backlash I guess I’d call such pieces. Hell, I’ve even actually been called out once or twice, challenged to stop complaining and “do something”, though that “something” has never been specified.

I’ve said here and in other places that I do not consider myself an advocate. I am wary of that word. There are many leaders in the breast cancer community doing “real” work—going to health or cancer symposiums and the like. Still others know influential people and politicians and work hard to challenge and change laws. I would not be any good at either. My grasp on the science and medical knowledge to attend cancer seminars is tenuous at best. My patience and diplomatic skills are slim to none. And my primary interest in all of this anyway is the sociology of it all—why the hell society behaves this way, accepts Pink each year.

But how does one change culture? What can I possibly do? Nothing, I’ve told myself. Cultural change is too tricky and there are no measurable outcomes that make a big, earth-shaking impact. No new laws passed; no new treatment discovered, no change in medical protocols. So why bother? Do I like ramming my head into a wall?

But a challenge I heard recently and keep coming back to is this: how will people know why this Pink crap makes us crazy if we don’t tell them? Yes, there is a part of me that still is resistant here—after all, not long ago I wrote a post about how I refuse to provide a list of “cancer patient approved things that are OK to say to cancer patients”. I still hold that point of view (hint, because if people listen—they will KNOW what to say to their individual patient, and most importantly, what is OK to say to one of us will be horrible for another of us).

This year I just cannot bear another round of “Awareness”. This year, I will explain to anyone who will listen that Pinktober has become stagnant, we need to evolve from mere awareness to education, to full understanding of the even less-than-rah-rah-cheerful facts of breast cancer.

I start today, October 1, with our #BreastCancerRealityCheck✅ campaign. When asked, if you don’t like something, why don’t you change it, I have an answer. I AM trying to change it. Things are not hunky dory with the same tired old Pinktober. I will tell you all about it. I hope others do too. My question now to those call those of us who criticize Pink “complainers” is: Will you listen? Will you let us convince you?  

Join us in this change won’t you? Use #BreastCancerRealityCheck✅ when you tell it like it is today (now until Midnight Pacific Time). Keep it real. Join our Thunderclap. For more details, see my #BreastCancerRealityCheck page. Shout out the TRUTH!

Now, GO!!!

Thank YOU!!

You did it! Now 100 of us have signed up for the Thunderclap on Oct 1! Now we know our social media message will be sent out at 7am PDT/10am EDT/3pm BST. Thanks to everyone who signed up and shared our tweets, posts, and blog messages, urging your friends to join in to inject some reality into the same old tired pink narrative this Breast Cancer Awareness Month!

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We still have much to do, of course. Keep urging others to sign up–the more tweets that go out at that moment on Saturday will only make our voices louder–and HEARD! Not only that, but continue to tweet out as many realities of your experience ALL DAY on Saturday. I know, I know. It is so much easier to just nod when someone says something irritating and clueless–because they have not had cancer and just don’t know. Well, rather than rolling our eyes and shrugging–let’s clue them in! Affect some change!

But right now, I’m taking a moment to breathe, to revel in my gratitude to all of you, for joining us on this crazy quest to try and start changing the narrative just a little. It’s true, I am a Curmudgeon–that will never change. But I am gleeful that so many of us share this load–and are willing to shout it out!

I can never thank you all enough!

Loud!

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Click the picture to sign up for the Thunderclap

We all want to give the world a #BreastCancerRealityCheck✅ on October 1, and we want the world to HEAR us! So we gotta get LOUD! To that end, a group of friends on Twitter formed Pink Is Not a Cure (PINC) just so we could create a Thunderclap—a sort of “social media flash mob.”

Some of you may already be familiar with Thunderclap and how it works, but some of you may not. Here’s the deal: We created a single tweet with the #BreastCancerRealityCheck✅ hashtag and everyone who signs up will have that single tweet sent out all at once (7am PDT/10am EDT/3pm BST):

“We don’t sugarcoat the truth: 1,430 will die today!  We need life-saving research. Join #BreastCancerRealityCheck✅”

*See bottom of this post for FAQ.  We need at least 100 of you to sign up so this tweet (and feel free to have the message sent out on your Facebook and Tumblr accounts as well) will be sent out on your behalf—but we’d love 1,000 to sign up! The idea, of course, is the more #BreastCancerRealityCheck✅ is in use, the more likely it will trend and attract attention. Hey, we need something to be heard over the din of Pinkness and whatever celebrity scandal will be happening that day!

Now, that is just the ONE tweet, we are still counting on everyone to craft their OWN creative and inventive tweets and tweet the heck out of them as often as possible, ALL DAY LONG. Which leads me to another exciting aspect: You Could Be Tweeting for Charity!

A panel of US and UK judges will pick the WINNING TWEET that best captures the spirit of this 1st Annual Breast Cancer Reality CheckDay. The person who contributes that winning tweet on October 1st will have money donated, in their name, to a US- or UK-based breast cancer charity advancing the kind of education and research that will SAVE LIVES. Symbolizing those 113 people (and many more worldwide!) lost to metastatic breast cancer on October 1st, the donation amount in the winner’s name will be £113 GBP (or $146 USD at current exchange rate). Winner will be announced and notified on Saturday, October 8th.

The general public is so accustomed to the usual pink din of October, they likely tune it out at this point. We wanna shake things up; inject some reality into this stagnant old pink ribbon fairy tale. Help us do that—put YOUR REALITY out there. For me, one of the best feelings I got after I started blogging was meeting people online who were NOT other cancer patients, who came to me and told me “I had no idea,” and now they don’t go along with the same old pink story each year either. They GET IT. It’s a GREAT feeling, being honest and changing minds!

*In case you are hesitant to sign up for this Thunderclap, know that they will not spam your friends, or tweet anything else on your behalf other than this single tweet—yes they do ask for access to your friends list—their FAQ page can explain all this way better, check it out: https://www.thunderclap.it/faq. And you must go there and sign up, not just like this blog post or the tweet inviting you to do this—you gotta go through the steps. It won’t take long and it’s painless. Trust me—I signed up for these things in the past and I have the patience and attention span of a gnat. If I can do it, so can you!

Visit our Thunderclap page by clicking here, the graphic at the top of the page, or the graphic below and please, please, please, sign up and participate!