Thunder and Lightning Very Very Powerful

This is a call to ALL cancer patients, survivors, former patients, caregivers…..EVERYONE, who has a desire to show the REALITY of the cancer experience. Sign up for the Thunderclap to take place on Sunday, 4 Feb (5 PM in the UK, Noon Eastern US, 9 AM Pacific US times). Tweet your experiences the hour after the Thunderclap, using #CancerRealityCheck.

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Remember it’s the amount of TWEETING and the amount of people RETWEETING your tweets that will get us noticed AND (this is important) ONLY use  on the tweets as this will help to trend – using any other hashtags will diffuse and dilute the message on the TRENDING board!

Any suggestions of cancer realities for your friends to tweet out are most welcome. Search the #BreastCancerRealityCheck for some ideas from 2016-17.  We look forward to reading some great tweets!

 

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This Is a Call to Action!

The group of tweeps behind would like your help in creating a tweet storm on World Cancer Day (Sunday, Feb 4, 2018)!

Background: If you are unfamiliar with , a short description:

The hashtag was suggested to be used on one day along with tweeted facts about the breast cancer experience that are generally not featured in the pink victory ads and feel-good stories featured in October (Breast Cancer Awareness Month). Things such as pictures of mastectomy results to offset the generally provocative and sexualized images used in BCAM ads for example. Or honest anecdotes about some of the lingering side effects of treatment which are generally not spoken of in the dominating narrative of “winning/beating/surviving”. Searching the tag on twitter can give a broader picture of some of the truly innovative tweets using this hashtag. For a broader more in-depth story, see Cancer Realities page.

Goal: We’d like to expand the reality checking to ALL cancers. Most cancer ads and feel-good news stories follow the general victory narrative similar to the BC format. It’s as if the pink ribbon narrative created a template—but so many of us with cancers of all kinds just cannot fit into it! Note the rash of think pieces that erupted after (American) Senator McCain was encouraged to “fight” his terminal brain cancer DX. The lack of knowledge and understanding about the realities of cancer on display stunned our community. Our goal is simple—change the cultural narrative and show what getting cancer is REALLY like—how it differs for each individual. (We are so NOT a monolith).

Processes: Given our experience with , we’ve already established some of the groundwork. Here is what we did in October: we targeted the “fairy tale” angle that seems to be divorced from reality for many of us with breast cancer and set up a Thunderclap with this message: “Breast cancer stories are NEVER pink fairy tales. ~1,430 die per day. Tweet your truth!” We created a simple image that worked with our idea of reality—the burning ribbon. We opted to have the hour after the Thunderclap occured as the time we encouraged people to tweet the most in an effort to get the # trending. Of course we wanted the # used all the time—but if we tried to get as many people to tweet in that small concentrated time, in hopes of reaching the thousands of tweets needed to trend.

For our inaugural event we’ll create a tweet message to augment , or perhaps contrast, the smiling booklets in oncology office. ~8.2 million died worldwide in 2012, and most cancer deaths are from lung, liver, stomach, and bowel cancers (most recent stats from World Cancer Day) and we would like to drive that message home!

We need your help! What are some realities you’d like to share? Tweet your truth! Encourage others to do the same, and to spread the word of this event! We’ll set up a Thunderclap shortly, to take place on Sun, 4 Feb, 2018.

Remember it’s the amount of TWEETING and the amount of people RETWEETING your tweets that will get us noticed AND (this is important) ONLY use on the tweets as this will help to trend – using any other hashtags will diffuse and dilute the message on the TRENDING board! These are the bare bones of what is involved in getting the storm going. We encourage ideas to make this bigger and likely to get noticed—media coverage is desirable.

We look forward to working with you.

The Cancer Curmudgeon Versus Snow: A Saga

Followers of my Facebook page will know I occasionally post harangues about an impending snow event. From 2 inches to 18 inches, doesn’t matter—I WILL complain. It wasn’t always like that. So what changed? Oh, in case you are wondering what this has to do with cancer, or my experience, bear with me, you’ll see.

Ocean City, Maryland, The Pier

Once upon a time, this beach bum liked snow. A true Atlantic/beach girl/Southerner, I knew that a couple of inches would close the schools—thank goodness. Northerners will never know the utter relief that comes with the gamble & pay off of NOT writing your big paper because of a snow forecast, and having that pay off of one extra day, that “Schools are Closed” day, to finish the paper. #ProcrastinatorsUnite. (Like you didn’t know I am a big procrastinator, please, look at this blog.)

A true book nerd/future English major, I also loved the romantic aspect of a snow day. The fact that I could stay inside, sip hot chocolate and read, watch old movies, whatever. That silly notion persisted through college days too. I even held onto the fantasy a little after joining the Real World. I embraced the idea if the world would just slow down for a moment, because of weather, I could catch up—read all those books I bought to “read later”, organize them, etc.

It’s not that I was completely unaware that people had jobs that meant they had to go out in the elements; I just thought I’d wind up being a writer, and I’d live snug in some apartment and could choose not to go out. Ah, being a slacker in the 90s while I was in my 20s was such a great innocent time.

But reality crashed and I had to drive in one too many bad situations only to have the store I worked in close after a few hours—a waste of a whole day. Maybe I was paid for the whole day, even the time I didn’t “work”, except the time I spent cleaning the car, driving, sliding uncontrolled into ditches, that time added up, and my resentment grew.

The pinnacle was the winter before my diagnosis. I worked at a non-profit and it had yet to enable us to work offsite. I drove several miles in a State of Emergency, passing a number of car accidents, to declare conditions too ridiculous to be open. And drove back home. And inevitably some fool complained a few days later—claiming their free off-of-work day (that they had because of bad driving conditions) meant I should’ve been working to take care of their stupid little problem, via phone, or they ignored the driving restrictions to annoy me in person. (Around this time I realized working in non-profit was just as disheartening as working in retail—because, assholes exist.)

I remember the times it snowed while I was having my chemo infusions. It’s not like I could stop those early; I needed the full dose, and then my ride had to deal with the shitty driving conditions. I don’t have digital copies of the pretty pics taken at the beach while I was in treatment—I remember taking the photos, trying to capture a moment even while too sick to be outside for very long. I’d like to share them here, but I’m not sure where they are. I might have trashed them—I went through a phase of destroying all physical memories of my time in treatment.

Now that I’m a pet/house sitter/self-employed/small business owner, I absolutely loathe the snow. Lost work days=lost revenue. Work days in snow are more physical labor, and labor is hard post-treatment, you know that. Work days in the snow means everything takes three times as long to accomplish. I’m already pressed for time to devote to reading/writing. This most recent storm, combined with my most recent killer cold, has been a huge imposition for me.

And of course, yes, I am mindful of the people who have to work in this mess. But more importantly, every time it snows like this, I see closures of local cancer treatment centers. I understand why—we are a beach area, there are few snow plows on the road, even now, several days later, some roads are truly impassable. Even today I skidded on a few side roads I use. So some cancer patients in rural areas simply are not going to make it to chemo, and some nurses cannot make in to work. To say nothing of dialysis patients, of patients with a million other concerns, who have to delay an appointment, to have to wait another horrible 24-48-72 hours for test results. Awful. I remember the snow while I was in treatment, I shudder, a particularly awful memory in an already awful set of memories.

But there is a deeper thing here to reveal about myself, this Curmudgeon. I am a cynic, I do not deny it. In fact I am slightly proud of it. But what is a cynic? Nothing but a (bitterly) disappointed romantic. I am sure I annoy many with my habit of always pointing out the bad stuff in a situation.

But that’s only because once upon a time I looked at the good in a situation first, and I’ve been disappointed bitterly too many times. If you really want to understand how the Cancer Curmudgeon comes to any cynical POV, look no further than this story.

Electronic Cat Database

“Our top story tonight concerns the Internet, AKA, the Electronic Cat Database” –John Oliver

Collective Soul Cat

Ain’t gonna lie: I’ve said I was too busy to write blog posts, but I’ve also just been too blue. I AM physically tired—lots of work, and as chemo and/or radiation recipients know, you are never quite “right” again. I used to have so much energy, but since cancer, I just have never felt quite as energetic. So yeah, at the end of the day, I just collapse—and marvel that I once went out to clubs after a work day (how? what?). But it’s more than that—I’ve been slightly depressed. I’m caught up in the 2017 horrific news cycle. I scan social media, save things to read later, but keep scrolling without going back to read—#FOMO in overdrive. I love being a good #Indivisible #Resistance member, but I am tired, as I suspect many are. So I have not taken time to attend to this blog, or even my CC Facebook page much lately. I gotta change that in 2018 (even though as a good Curmudgeon, I think NYE resolutions are total hogwash).

The threats to the Patient Protection and Affordable Care Act have taken much of my attention this year, and will again next year. Coming in at a close second has been the Net Neutrality issues. That sort of surprised me—I mean I am one of those crazy lefties truly and deeply concerned that authoritarian rule is about to descend upon my country. I’ve been really upset about so many things, like the lying, the attacks on media, on immigrants, on, on, on—but the attacks on the Internet have really made me nuts. Yeah, yeah, I know, nothing has changed since the FCC vote a few weeks ago—but I know how these things go—it will happen incrementally, so we accept without notice. How will this impact my blog? Will people pay for access to WordPress blogs? Would I? I do think that packaging of things like FB/Netflix/Hulu/Twitter will happen. What will happen to Tumblr? Yeah, I know, Tumblr is for teen and twenty-something depressed girls or whatever. But it helped me back in 2012. Just out of treatment, just quit my 9 to 5 and starting my own business, post-treatment depressed—I fell into the fandom stuff there. I met people there. My first online cancer friend, Greg, who eventually died of Mets prostate cancer, was found there. My dear friends @angel-of-malahide and @toasty-hancock were there. So, I cannot imagine not having access to Tumblr, but my pragmatic self won’t “pay” for it. Hell, I just cancelled Netflix today—which was unthinkable years ago. But, I don’t have time for Netflix, so why pay? I used to be such a film geek this was unthinkable, but, buh-bye.

And this is the crux of it. Yes, I benefited from the in-person support group at my treatment center. But it was the online support that allowed me to truly recover, mentally. My support group was small and rather enlightened for all that we were in a rural area (I was NOT the only one pointing out pink lameness, or pointing out the sexualization). But it was online that I found my niche. I found The Sarcastic Boob. I was so honored and happy when Scorchy herself reached out to me via email (inspired a whole blog post because of things she asked me). I met Karen the Commenter. We had long email conversations. And then I met more and more. (Confession: started listing y’all, but stopped for fear of missing someone; started checking FB friends and I don’t think I need to explain how troubling it is to see names of the dead there). I became myself again. In short, without the Internet I would’ve been lost.

My point is—and I DO have one that I AM getting to—is that I am so grateful for everyone I’ve met via Internet. I’ve been lucky to meet a couple of y’all IRL. I’ve cut myself off a bit this year, and that has been a mistake. Granted, I cannot keep up the previous frequency of posts, but I’ve been TOO infrequent this year. I’ve missed the interaction. I am indeed am introvert, so it seems odd that I would miss interaction, but I do. In fact, not interacting becomes a bad habit. I get stuck inside my head too much, and that is NOT good. (Or maybe my head got stuck in the other place, hardee har har.)

As I think I’ve mentioned before, I don’t really celebrate the holidays, what with half my life being in the service industry, holidays are just times when life is too busy, and I’m usually working. When the holidays are over and the new year begins, that’s a better time for me. I kind of like the return to routine, the disruption of the holidays is over. I cannot help but think I am not the only one with this view. Anyone reading this live in a small town too? Anyone else have that one restaurant or fast food crap hole that the retired set like to hang out in every single morning? I know some of those folks, and I know they kind of like it when the disruption is over too. Maybe their families live too far away for a visit (or some other far less pleasant back story), and they just want to get back to the everyday comfort and joy their pseudo family provides. I can’t help but think the online community is like that. It is nice to see family—for some of us. But the families we’ve created here online in our blogging community, the people who “get us”, well, it’s good to get back to that too.  We all know that not all of our family members have been able to support us during the cancer in the way we needed. So we need this thing, this Electronic Cat Database, this Internet. (Also, for the cat videos, which I’ve mindlessly watched lately. A lot.)

So my sort of, cough cough, resolution (ugh), is to return. A return to writing, to reading, to commenting, to interacting. I need it.

Look out 2018!

 

Smiles to Smirks

Couple of weeks ago there was that little stupid news tidbit that some guy created a mirror that only shows your reflection if you smile while looking at it. There were a few “forcing cancer patients to smile” type of clickbait headlines, and I admit, I fell right into it. Now that I’ve taken a step back from the heat of the moment—I wish to ponder, as I so often do.

My smiles turn to smirks or something. Oh and yeah, flipping people off too!!

Yeah, “forcing” was a bit over the top. While making a mirror that only works if you smile at it is kind of “forcing”—it ain’t like there aren’t other mirrors to use. This was pointed out in the furor of comments on the mainly derisive think pieces written about it.

Oh no, I’m not giving the guy who created the mirror a free pass—Hell no! I still think he was wrong-headed even though he had indeed taken inspiration from an ACTUAL CANCER patient. (Just one as far as I can tell.)

I’ve used the “if you don’t like it don’t use it” argument myself. Don’t like a TV show, think it shows the degradation of our culture—change the channel! Ain’t nobody forcing you to watch racy things you disapprove of! I admit I had a harder time a few years ago when Needless Markup, whoops, I mean Neiman Marcus, was selling collard greens at a ridiculous high price for the holidays. Sure, it didn’t matter really—I can make my own Hoppin’ John and collard greens, I’m good at it if you must know. But there was something, I don’t know, “icky” about some fancy Big City company charging a high price for poor people food. (Anyone asks for my recipes, I kill ‘em, just so we clear, OK? #RedneckLife4ever.)

But hey, no one FORCING me to look into that mirror, I get it. The “you can change the channel/turn off TV/not buy overpriced White Trash food” argument can be used against me. So why does this mirror—that I don’t have to buy, and will likely never see, bother me?

Hahaha, anyone reading my blogs for a few years knows, I ain’t got an answer or solution or anything!

So why bother, why get into a lather?

I don’t know. I don’t want to invoke the slippery slope clause here. But it does make me wonder, why on earth did the developer think this was a good idea? Given the number of derisive articles and snarky tweets I saw, I think if he’d done a little research, maybe he would not have moved forward with his idea. But I don’t know. I mean, it IS true, if one smiles, it releases endorphins that make one happy. But I don’t wanna smile, I don’t wanna “fake it ‘til I make it in CancerLand”. Bottom line, why should I?

I think I got annoyed because for me, it reinforced the idea that just won’t die: “cancer patients need a push to be cheerful and all will be well.” It’s like it just never occurs to people to just ask us what we think, and to listen to us. Just listen. Not judge. Not comment. Not “do something” to cheer us up—because I still think that only benefits the people around us—not us, actually.

In other words, I’m not sure this was to benefit cancer patients, so much as it was a ploy to make everyone comfortable about cancer. And we all know I hate that!

So what about those that questioned why this mirror encountered such a backlash? What about those who thought, just don’t use the mirror?

I can never make them understand. People who only understand things once they actually experience them—ugh, that is a subject for a future post, I don’t wanna go there today. I can only comment this:

A culture that we occupy, in which an art/architect student thinks a mirror like this is a “good idea”, we have miles ago in our quest to make others understand so very much about cancer.

So in short, this mirror made me tired, like everything else that happens in CancerLand. Why do we have so far to go?

You First

Once upon a time, or maybe 2 years ago, I got mad about something and wrote a post called Mean Streak. I felt kind of bad about it, hence the name and tone of the piece. I really wanted to call the post YOU FIRST. The current political climate in America has erased any guilt I feel about thinking YOU FIRST in response to the stupid argument: “we are all going to die someday”.

For those in the TL;DR class–what I was mad about 2 years ago was some damn social media comments on Angelina Jolie choosing preventative mastectomy due to her BRCA+ status. Some jerk went on a tangent about how we (Americans? society?) waste too much money on life-extending medical procedures, whether they be preventative exercises like Jolie’s, or those in the end stages of cancer, taking whatever medications they can, price be damned, to have a few extra weeks with their kids. He argued that we all die, and it was irresponsible (or something) to leave the family with a mound of medical debt. The “we’re all gonna die sometime” is a particularly callous point of logic when you are the one closer to death, believe me. Because, yeah, it is true, we indeed ARE all going to die at some point. Where things get tricky are the who and the when and the how.

For most of 2017 the repeal and replace debate has dragged on, zombie bills keep rising up. Those of us who’ve benefited from the Patient Protection and Affordable Care Act live on tenterhooks. In my activism role, I have been haunting the dark areas of the internet–political Twitter–and have often been enraged and sickened. Actually, I kind of stay that way. I remember being so upset when Kennedy was on Fox News and used the “we’re all going to die someday” argument, embellishing it with things like liberals don’t have a direct line to heaven, so there is no way any of us can know exactly when we will die. Her conclusion being that activists should settle down about whatever zombie repeal bill was in the news that day.

Note–most people know by now, but if not, yes, Kennedy was that annoying MTV VJ back in the 90s, hosted “Alternative Nation”. I did not like her back then, and I absolutely loathe her now.

Oh Kennedy, instead of being on MTV, you should’ve taken some classes in math or stats & probabilities or something. Granted, I avoided those classes too. But having cancer, I’m a little more aware of how it all works. For me, it is so, so simple. If I cannot afford health insurance, I will skip all my annual visits–oncologist, gynecologist, and even the GP. If cancer comes back, it will not be found. If it gets to the point I notice it, and it is found, I will not get treatment. See, that’s the advantage of having cancer a few years ago–I know how much every little thing costs. So I will die. Now, maybe I only have a 20-30% chance of recurrence, that isn’t too bad. Except guess what? I’ve been in those low probability categories before: my chance of getting cancer was not 1 in 8 (that’s lifetime risk), it was 1 in 233 (age 39); only 20% of us are HER2+, mammograms are only 80% effective–guess who got a false negative? So yeah, I’m not a fan of probability.

Sure there are many “ifs” in my line of thinking. So I can’t just jump to a slogan of “repealing ACA will kill me!” No, I don’t know this for sure. I just know the probability of repeal being a factor in my death is higher than that of Kennedy’s probability, or anyone else making that stupid “we’re all gonna die sometime” argument. See what I mean? Understand why I get angry about it?

Kennedy made this comment earlier this year, in the summer. I just shut it away because I was SO angry, and because, as my fellow resisters know, there are just too many things happening all the time now. I literally cannot pay attention to every little thing. But the memory of it came roaring back listening to Mike Pesca’s podcast “The Gist” last week. He was interviewing one of my favorite health policy reporters, Sarah Kliff, and they were discussing if slogans or arguments that cutting CSRs, Medicaid, and Medicare would really cause actual deaths. Kliff, being smart and journalist-like, cited studies proving yes indeed, a line, however long, can be drawn from lack of health insurance to death outcomes. Like my own example, there a number of “ifs” in that line. But, like I said, I had some improbable things happen to me, and it ended in cancer, and it sucked. I realize Pesca was just pointing out that hyperbole-style slogans are not exactly accurate, there is a great deal of explaining that has to go with it. He isn’t wrong; I’ve always had problems with breast cancer awareness slogans. Easy, tweetable things like “a mammogram saved my life” or “early detection saves lives” are debatable. Don’t get me started on the “feel your boobies” shit. But I see how they work. Easy, short messages succeed–along with cute merch, of course. So I engage in hyperbole–in spite of hating it–my own self now. Yeah, stopping CRSs, repeal without replace, that stuff will kill me (quite likely, see I have to include a disclaimer at least here, just can’t go full hyperbole).

So is it any wonder, now that I embrace overwrought slogans and bitchy quips, that when someone uses the pithy “we all gotta die sometime”, that I snap back with “yes we do, but you first!”? And, no, I don’t feel bad about it all. Two years ago, I did feel bad. I know it isn’t a nice sentiment. But the crass times we live in, with the lack of civility, have cured me of caring much if I sound downright mean. I remember crying on November 9, 2016. I was sobbing on the phone, explaining to my mother that I felt that this country was telling me it did not care if I died, because so many people voted in a Congress committed to repeal. She thought I was making a leap. But given the amount of “we all die sometime” sentiment I see expressed around the repeal debates, no I was not making a leap.

The healthy privileged in this country can glibly state the obvious, factual point that we all die at some point. But because of their health privilege, their employer-paid insurance plan, their likelihood of dying sooner rather than later is less than mine, less than that of my friends.

If it is so easy for these people to say “we all die sometime”, disregarding how it sounds to those who’ve gone into medical debt for every life-extending treatment they can, disregarding how it sounds to those of us about to lose health insurance, then I have no problem answering, “yes, but you first.”

I want to live. Don’t underestimate how much my will to live will make me fight you and your stupid, flip arguments.

Grateful for the REAL Tweets!

A GIGANTIC thank you to all participants of Saturday’s Tweetstorm and/or Thunderclap!

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While we did not get #BreastCancerRealityCheck trending, we did make an impact. Over 3,000 tweets last Saturday, far exceeding last year’s 1,000! We couldn’t have done it without you!

Of course, we (@barbieslosingit, @bccww, @abcdiagnosis) keep checking in on the hashtag in Twitter, and we are encouraged to see everyone keeping it going, continuing to share all the realities of this horrible disease we share. By continuing to shine a light on these realities, we remind the world that the sanitized story repeated ad nauseam is FAR from the whole picture.

Keep sharing YOUR reality, don’t let anyone stop you. You are NOT being depressing, or merely complaining. You are telling YOUR truth, and letting others who may get sucker punched in the future with a diagnosis, that they will not be alone.

 

Let’s Go!

Now is the time, and the hour will soon be upon us. It is now up to you to make it happen!

What is the reality YOU want everyone to know?

I think about how the months from October 2010 to the end of 2012 were what I still call “the lost time”, because I was in treatment, and then dealing with depression and fatigue even after treatment ended in January 2012. An event from that time comes up in conversations, and I just don’t remember it–just one of the million little ways cancer still impacts me.

I think about how I celebrated the first time, somewhere in 2013, I was able to stay awake from about 7AM until the 11PM news without a nap (note I don’t say I got to watch the whole news program, I only made it to 11, ha ha).

I remember having insomnia, and reading to pass the night away, and found an article about how insomnia can cause cancer, which….gave me more insomnia.

I think about bigger issues, less personal stories, that are my personal pet peeves in cancer advocacy world. If I see one more BCAM tweet equating early detection with early prevention, I swear, my head will start spinning, Exorcist-style.

What are the realities YOU will share?

Flex those fingers hovering over keyboards and smart phones…

Get ready, get set….and tweet, tweet, tweet!!!

 

Ready…Set…

Tomorrow is the big day! There’s still time to sign up for the Thunderclap–if you already have, please ask your friends to join in!

We cannot say we’ve exactly “enjoyed” reading all the tweets/stories that ARE your personal realities. Because, well, it sucks that any of us had cancer, it sucks we have to do this reality check to counter all the fairy tale stuff out there. But there is a lot of clever humor in some of your tweets. But most importantly, these tweets and stories remind us all that we are not alone.

That said, we cannot say that we exactly “look forward” to all your tweets during the hour-long tweets storm (10amPDT/1:00pmEDT/6:00pmBST), but we look forward to all the witty, funny, sometimes sad, community-building that will take place.

Click on image to sign up for Thunderclap!

A Few Tips for Tomorrow:

While we all strive to get #BreastCancerRealityCheck THE trending hashtag for the hour (10amPDT/1:00pmEDT/6:00pmBST), we encourage everyone to use ONLY #BreastCancerRealityCheck in the tweets. Hashtags such as BreastCancerAwarenessMonth, ThinkPink, PinkIsNotACure are pretty well used!

Not going to be near social media at the appointed hour tomorrow? No sweat! Use Tweet Deck or some other dashboard application management tool and schedule tweets ahead!

Be real, be you. A reality check is about informing others what having this disease is REALLY like. We know some businesses will (again) see the hashtag and use it to shill pizza or something (yes, that happened). But that is not what this is about. Move beyond the dominate narrative, the crass cause marketing. Above all BE REAL.

See you tomorrow!

Y’all Rock!

We have reached our threshold of 100 sign-ups for Saturday’s Thunderclap. That means at 10amPDT/1:00pmEDT/6:00pmBST your–our–message will be sent out into the world:

“Breast cancer stories are NEVER pink fairy tales. ~1,430 die per day. Tweet your truth! #BreastCancerRealityCheck

Y’all who’ve signed up just ROCK!

If you haven’t signed up yet, you still can, and please do! The more of us there are, the louder will shall be.

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But it won’t stop there!!

For the hour after the tweet happens, tweet the heck out of the #BreastCancerRealityCheck with YOUR dose of reality.

We WILL be heard!

Again, we cannot thank everyone enough for joining in, for chiming in. We especially thank our friends over at The Underbelly for helping us get the word out–your support is EVERYTHING.