I'm so tired of the dying...the lack of help...the lack of voices (being heard).
I'm tired of my friends suffering.
I'm tired of conferences that make no news and no difference.
I'm tired of researchers and scientists who strive only for notoriety and accolades.
I'm tired of awareness.
I'm tired of sending messages that can't express how sad I really am anymore.
I'm tired of watching women wither away as their options run out.
I'm tired of seeing the same shit over and over because no one is listening. No one is coming.
And we... we just get to sit and wait and watch and feel and talk and write and share.
But who is out there?
Who really cares?
Does any of it matter?
The optimist in me says yes it matters.
The pessimist I'm me says it hasn't mattered so far.
Sometimes I think...in the cancer community...we assimilate into more military type language than we realize.
And I'm not talking just "Battle Language." I'm talking about how we quickly fall into line with our NAME RANK & SERIAL NUMBERS.
Hi. My name is Melissa. Diagnosed April 2013 - age 37 Invasive Ductal Carcinoma Stage 1a Tumor 1.8cm Grade 2 ER+ PR+ HER2- BMX June 2013 NO node involvement 11 nodes removed Oncotype 10 No chemo No radiation Hormone therapy - Tamoxifen Chose Reconstruction Expanders June 2013 Silicone Implants October 2013 Tattoos October 2014
But this data...
...this data doesn't begin to describe who I am or how this has all made me feel. It altered me in innumerable ways. IT impacted me FOREVER.
You Are Not The Keeper of My Medical Mastectomy & Artistic Expression Sharing Rights
It's 2016. These images should neither shock nor offend anyone. But if by chance you've been living in a hole, under a rock or simply haven't left the dark ages and these images do offend and/or shock you when you come across them, might we suggest you just roll on by?
Do not stop...
Do not report...
Do not comment...
...on things that you have no interest in supporting.
Images like these of post mastectomy bodies have long caused squinting and wincing but we are firmly in a period of time both socially and culturally where these images are more than ever important (dare I say critical) to have access to in order to diminish both the mystery and secrecy of breast cancer's physical and psychological toll. It's time to permanently lift the veil and shine the light on what is one of the most devastating surgical procedures for women.
In 2013 Facebook and Instagram (owned by Facebook since April 9, 2012) both chose to support the public sharing of these images in light of their educational and experiential value. After all, breast cancer is a disease that is impacting over 290,000 newly diagnosed patients every year in the United States (source). A disease that is taking the lives of over 40,000 Americans annually (source).
Despite their policy changes allowing mastectomy photos, both companies continue to censor these images by taking them down, discriminate against those sharing these images by locking out account holders for periods of time and even deleting their accounts entirely. To put it bluntly, they are flat out ignoring and overriding their own policy revisions. They continuously allow what appears to be an influx of CYBER TARGETING & ANONYMOUS ASSAULTS on account holders that have done nothing wrong.
For years individuals and groups have been responding with outrage over the removal and banning of mastectomy images from both Facebook and Instagram. Prejudice and censorship of images that help disperse the realities of breast cancer and the choices patients have after they undergo scarring and body altering procedures continues to be pervasive and without any real recourse on behalf of the "offender" i.e. the account holder, photo sharer.
We are not okay with this disregard of policy. We are not okay with the continued censorship of REAL LIFE. We are not okay with the ability of anonymous reporters to inflict damage and disrupt the course of social communication of account holders and businesses trying to change the world in beautiful and important ways.
Join us in our outrage.
Sign the latest PETITION to end this censorship and to rectify a broken Facebook and Instagram policy and SOP (standard operating procedure) for determining what is and what isn't pornographic/violent material.
xo Melissa
~
Just for posterity...here are some stand out events that have occurred regarding post mastectomy images in the public eye.
August 15, 1993 The New York Times - You Can't Look Away Anymore(Article and Photograph of Matuschka)
1993 Matuschka - The New York Times Magazine
2003
LIFE Magazine - features Matuschka's famous photo as one of the 100 photographs that changed the world.
Joanne Jackson's mastectomy photos (that revealed her scar ONLY) are removed by Facebook for being "offensive." Joanne is warned if she continues to share such photos her account with be shut down (article).
Joanne Jackson
May 2013
The New York Times - Angelina Jolie announces to the world (article) that she underwent a preventative bilateral mastectomy after learning she carries the BRCA gene.
TIME Magazine - The Angelina Effect(article). Genetic Testing for the breast cancer genes, BRCA1 and BRCA2 sky rockets as a result of Angelina's story.
The SCAR Project David Jay (The SCAR Project) is inspired to re-share his images of women who have undergone surgical procedures as a result of breast cancer to raise public awareness. Facebook later pulls the images from the projects Facebook account due to nudity concerns since (at the time) guidelines enforced a strict ban on nudity (cough cough - nudity is not monitored closely on Facebook...just take a look around...you'll see) and could remove photos of exposed breasts.
Facebook bans David Jay's account for 30 days. Stupid Dumb Breast Cancer Facebook outright asks Ann Marie Giannino-Otis of Stupid Dumb Breast Cancer to remove post mastectomy images from her Facebook account.
Ann Marie Giannino-Otis of Stupid Dumb Breast Cancer
Change.org These actions incite the first Change.org petition of it's kind.
The petition (written by Scorchy Barrington) asked Facebook to change their policy so that mastectomy images were no longer treated as pornographic. Facebook responded indicating they had always allowed such images however they admitted mistakes had been made and that the policy was never implemented properly (article). Shortly after launching the campaign Barrington's petition had garnered the 20,000 signatures necessary to get Mark Zuckerberg and Sheryl Sandberg's (i.e. Facebook's) attention.
June 12, 2013
Barrington proclaims "Victory!" Facebook's policy team tells Barrington they are committed to clearing up any internal or external confusion regarding images of mastectomy and clarified their policy (article) (article).
May 2014
CBS NEWS - Ann Marie Giannino-Otis of SDBC story is featured on local CBS affiliate.
August 2014
CBS News Sunday Morning - with Matuschka (the model who bared it all in 1993).
*The facts reported in this video regarding survival rates / death rates are skewed and do not accurately reflect the true state of breast cancer today in 2016.
December 2014
Grace Project - photographer Isis Charise's account(s) are locked by Facebook due to mastectomy photos being repeatedly reported as pornographic or containing graphic violence. Individuals who posed for the Grace Project also come under repeated fire for sharing their raw, naked images of their mastectomy and scars.
The Grace Project travels over the US educating through beautiful photographs by Isis
Charise Isis Grace & Sarah Friend Amento
February 2015
Washington D.C. - Joules Evans (author, Shaken Not Stirred...A Chemo Cocktail) and Isis (photographer, Grace Project) come to Washington D.C. to photograph more women who've undergone mastectomy procedures. I am one of them. I was well aware of the recent bombardment of reports against the project's photos so I asked Joules to make a #DBAA (Don't Be An Asshole, a Jen Pastiloff-ism) video with me to share publicly and denounce the hateful reporting of these incredible photographs.
Little shout out to my friend Jen from the Grace photo shoot in DC last night. Proving once again, that all roads lead to Jen...my new friend Melissa walked in the door for her photo shoot with Grace photographer Isis Charise...and first thing out of her mouth was how freaking cool is it and how small the world is...cuz she is an uber big fan of Jen's...and so we have both Grace AND Jen in common. Which sealed the deal. #fastfriendsAlso she had a super important PSA regarding the flagging of mastectomy photos on FB: #DBAA
Posted by Joules Evans on Thursday, February 26, 2015
March 2015 Jennifer Pastiloff aslo makes a video denouncing the reporting and flagging of mastectomy photos.
September 2015 Glamour Magazine - features "What Breast Cancer Really Looks Like" (article)
Beth Fairchild and Emily Jenseon are two of the women featured in an attempt to bring to light the the complex and nondiscriminatory disease that is breast cancer. These photos also shed light on the different choices each woman has made regarding her individual diagnosis.
From left: Fairchild; Pleva-Nickerson with twins Graceanne (at left) and Teresa; Salazar with daughters Cara (at left) and Lexi; Jensen; De Vose.
Beth Fairchild
Beth is a tattoo artist, wife, mom, activist, advocate and a Stage IV breast cancer patient.
Emily Jensen
Emily is an activist and advocate for breast cancer patients everywhere and helps bring to light the option of no reconstruction.
"I have no breasts. And my body is gorgeous. That's all there is to it." - Emily Jensen, 34, Seattle, diagnosed three years ago (Glamour)
October 2015
Pink Ink Fund - Amy Black (Tattoo Artist) receives notice that her images on her (non-profit) Instagram account, Pink Ink Fund, has been reported and her account is completely DELETED despite their own policy that allows such photos.
Amy Black
Watch this incredible video of Amy as she presents at TedX Richmond, Virginia on the topic of the nipple and how she started providing this service to women so desperate for something they've lost.
Note: again, Instagram is owned by Facebook and their policy is verbatim the same.
Outrage from supporters ensues and the media picks up the story.
These months see an huge increase in the reporting of private and public accounts who share images of women post mastectomy, revealing scars, reconstruction and no reconstruction, decorative tattoos, nipple areola tattoos, all of which adhere to the policy of both Facebook and Instagram.
Despite following the policies and guidelines, anonymous reporters continue to be allowed to CYBER BULLY & STALK those who support showing post mastectomy photos in an effort to educate and unite the community of those impacted by breast cancer and those at risk.
Accounts that experience ongoing harassment that I know personally include but are not limited to:
Beth's work clearly states the photo is of a tattooed areola on a breast cancer survivor and is not real, but rather a 3D tattoo (although entirely realistic...which is the point!), yet Facebook still decides to remove the image and lock Beth out of her account once again. Beth faces repeated attacks and unfair, targeted reporting on a regular basis and as a result faces more often than not, a great deal of interference with her ability to conduct her tattoo and advocacy work. These are the sort of actions we demand Facebook monitor and pay attention to.
Kelli Parker is a huge advocate for breast cancer patients everywhere, bringing light to some of the most hidden and hushed conversations about metastatic breast cancer through her personal page and her I Am Susan page. This photo on the left with a prosthetic nipple on her forehead was a joke (regarding the repeated reporting of her friend, Beth Fairchild's photos) but it too came under fire. As ridiculous as that seems, it caused quite the uproar and simply proved the point the Facebook was paying no attention to what was being reported.
~
We've Gained Huge Support... from within AND out of the breast cancer community. MOST people want to be able to see what their options are and what outcomes can look like under different circumstances. MOST people want this formerly closeted topic to remain out in the open and under a bright light. MOST people understand the real and beneficial impact these images are having for women who already face an uphill battle in a society that constantly critiques, judges, shames, exploits and objectifies us. The Fight Continues... and it will go on until these photos can no longer be the targets of oppressive, small minded people who want the real image of breast cancer to remain hidden in the shadows. Until my (our) right to show my (our) story is protected more than your right to be offended.
~
So... How many Open Letters do we need to write?
The Muse 2013 Sara Bartosiewicz-Hamilton of Flat and Fabulouswrites...in response to The SCAR Project's photo removals by Facebook.
December 20, 2015 Cult of Perfect Motherhood Open Letter (also picked up by The Huffington Post here) December 20,2015 I would be remiss if I left this lovely Open Letter out of this blog. This was a publicly shared plea for Mark Zuckerberg to continue the removal of mastectomy images and the discrimination against people who share post mastectomy images. This is the very sort and type of person who finds it too difficult to just scroll on by and block or hide what offends her. This is the very sort of person who hopes to see the truth of breast cancer shoved back into the dark corners of medicine. This person has also made it her mission to continuously report photos and make a mockery of the system which is meant to protect people from true forms of pornography and violent content.
Today marks 1,000 days since I was told I had breast cancer. 1,000 days since I sat in the my doctor's office knowing in my heart and gut but not wanting to hear until I no longer had the choice but to hear the words "you have breast cancer." The words echoed into a hallow abyss in my body. Those words still vibrate in my entire antatomy today.
To put this mildly into perspective I've approximated the following based on widely known and shared statistical data (source). It's depressing. But it's real. Don't ignore it. Over the last 1,000 days... In the United States alone... Approx. 806,795 people have been diagnosed since I was told "you have breast cancer." and Approx. 113,000 people have died from metastatic breast cancer. and This isn't going to stop until something very BIG changes. and The only way to make change happen is to take action (see MET UP).
How many days has it been since your original diagnosis?
In the last month I've seen two professional tattoo artists get banned from both Facebook and Instagram for their sharing of post mastectomy, scarred breasts with newly inked artwork or areolas DESPITE both company's policies supporting the sharing of such images. Needless to say it's an outrage and it hits close to home.
The progression of a recontructed breast is something not only painful...but in the end...quite beautiful. In no way do tattoos take away the pain we endure as breast cancer patients/survivors/whatever you call yourself. BUT...it most certainly does in every possible way give an individual some control and power back over what was taken against our choosing.
My tattoos were my choice. My tattooes gave me an ability to see something that was taken away from me...something I desperately wanted to see again. Not everyone has to want or need this but by all means...everyone should support my and every other human beings right to have this and to share this option.
Nipple/Areolar tattoos are a wonderul gift - created by talented professionals and artists like Beth Fairchild and Amy Black (and many others).
Stop shaming the nipple and in turn shaming the woman.
Anyone diagnosed with breast cancer should instantly be concerned about translatable research (therapies) no matter their early stage and be acutely aware of their potential to become METASTATIC. Because 30% (after all) do metastasize.
We've played the awareness game so long we can regurgitate these nuggets like a reflex and it's giving me reflux (ha!). It's become robotic. And it isn't making the slightest dent in the death toll.
We know this because three decades of awareness has gone by and still every year in this country we surpass the 40,000 mark. And every year those numbers seem to be swept under the rug in the hope that no one will notice.
It is so appalling to me that in our age of modernity and techno advances we still have not evolved enough to actually track metastasis in patients in order to have better data. So that we may show the hard evidence!
Research (NOT AWARENESS) is what we need. I dare say an entire revolution is what we need when it comes to breast cancer.
Supporting new, trendy, yet redundant and often deceitful "AWARENESS" campaigns is (IMO) like sponsoring the deaths of 40,000+ people a year in the US. You might as well be the undertaker.
So...essentially...if you jump on the PINK band wagon and vomit the same ludicrous things like "early detection saves lives" or "mammograms save lives" or that breast cancer is the "good cancer" (because we get so much money) or if you were just more positive you'd get better or if only you'd just "cop'd a feel" ...well then my friend you're part of the problem! A very deadly problem that might one day actually beyour problem.
And then who will you turn to?
Food for thought. I mean...I've certainly thought about it. Have you?
~Melissa
#metsmonday #dontignorestageiv
post script... I never said I didn't have strong opinions.
As the month of October - Breast Cancer Awareness Month (a.k.a. Pinktober) draws to a close, I wonder if you know.
It is very important to me that I share what I know. Breast cancer is not all you think it is. It’s not all I thought it was - before I actually started educating myself. There is a lot to know…more than you will ever learn at most breast cancer related events and more than I can convey in this long post.
As many of you might already know, in 2013 at the age of 37, I was diagnosed with Breast Cancer. My cancer was found at Stage 1. This is good for all intents and purposes but still a devastating diagnosis that comes with lifelong impact (often underestimated).
What many don't realize is that this early finding of my cancer and my current “healthy” status DOES NOT guarantee that the same nasty little breast cancer cells are all gone necessarily. In fact, they could be in my body quietly remaining undetected. These crazy cancer cells can do this for many years or even decades before activating again and then causing symptoms that would later result in a Stage 4 Metastatic Breast Cancer diagnosis (cancer that spread beyond the breast). Breast cancer cells love to move to our bones, lungs, livers and brains.
Science and statistics tell me it’s not likely but we all know science and statistics aren’t always reliable. And cancer is the furthest thing from reliable. So it remains a reality I’m in touch with and an ever present danger that I am all too well aware of. ALL the time.
So… Do you know the meaning of METASTATIC (Stage 4)? Do you know that the only breast cancer that kills is Metastatic Breast Cancer? Do you know that after 30+ years of AWARENESS “FOR THE CURE” there is STILL NO CURE? Do you know that finding breast cancer early is NOT the key to saving lives? Do you know that mammograms serve a purpose but also DO NOT save lives? Do you know that 6-10% of all new breast cancer patients at diagnosed Metastatic from the start? Do you know that 30% of all early stage patients later become Stage 4 and we don’t know why? Do you know that just because you have hair - doesn't mean you're well? Do you know that this a not just your "Grandmother's disease?" Do you know that 40,000 people in the US are dying every year from Metastatic Breast Cancer? Do you know that we're not tracking progression of Early Stage Cancer to Metastatic (giving a false survival rate)? Do you know that “awareness” campaigns don’t save lives? Do you know that Metastatic disease is treated like a dirty little secret? Do you know that the average life expentancy of a Metastatic patient is 3 yrs? Do you know that ONLY 7% of all breast cancer research money is used on Metastatic Breast Cancer? Do you know what a person with Metastatic Breast Cancer looks like? See #iamsusan Do you know that 60% of people know VERY LITTLE about Metastatic Breast Cancer? Do you know that more and more YOUNG WOMEN are being diagnosed with Metastatic Breast Cancer every year? Do you know that men get breast cancer? Do you know that Saving TaTas is NOT equal to Saving Lives? And it’s incredibly offensive!
Since the day I took my first breathe on this planet 40 years ago, the number of annual deaths from Metastatic Breast Cancer has remained unchanged. In my lifetime alone 1.6 MILLION Americans have died from Metastatic Breast Cancer. This will continue without more research funded in the right direction.
THIS HAS TO CHANGE
All those pink ribbons and merchandise that you think are contributing to a good cause to "FIND A CURE" probably (in all likelihood) are not doing anything at all to find a cure. The majority of the money raised by events and merchandise is squandered on yet more events, more merchandise, more marketing, more "awareness", people's salaries and big non-profit overhead costs and NOT ON A CURE.
The only thing that helps find cures or life extending treatments is SCIENTIFIC RESEARCH.
There is a big push to help facilitate this long overdue shift. Groups have organized like METUP.org (inspired by ACTUP and the AIDS Crisis). Congress is being pressured to finally allocate fair amounts of research dollars to match the percentage of those impacted 30% for 30%. There is a slow but growing shift in the collective consciousness about the stale mission of “awareness” campaigns and the fun, pretty, pink, party-like, and all too often sexualized manner in which breast cancer is portrayed. It isn’t fun. It isn’t pretty and it certainly isn’t sexy. And something many may not realize – it’s not about breasts in the end. It’s about lives.
What I've discovered since my diagnosis is that I knew very little about breast cancer. Even my first year of being a breast cancer patient was pretty uninformed when I look back and realize all I know now. Until you're deeply impacted by cancer (or educated by someone who has been) you’re probably in the dark about what is really happening to people who are living with and dying from it.
So I beg you - with all your good intentions - to think twice, to pause and to reconsider how you support causes like breast cancer or any other disease or cause close to your heart and ask the important questions. These questions matter.
Does this charity do what they say they will do? How IS this money being spent? How might it be better used? Who benefits from my donation?
You can find almost any legitimate charity/non-profit and see their ratings and financial reports (any good organization will be transparent) on charitynavigator.org
If you find it in your hearts to donate to breast cancer in the future I would implore you to consider donating to METAvivor.org because they are run entirely by volunteers (who are living with but also dying from metastatic breast cancer) and they use 100% of their donations to fund research to the only kind of breast cancer that kills - METASTATIC breast cancer.
I know for me personally, that's the organization I support because I have TOO MANY friends who are Stage4 and I want them to live – not die. And in the event I someday become Stage 4, I want to know that I helped support the only research that might actually help me stay alive.
In the meantime I’ll be over on my other Facebook page; Bravery Grace & Badassery – where I do the majority of my advocating, educating and sharing of information. I hope you’ll wander over there to follow or simply check in on occasion to see what’s new. There is a lot happening these days.
