Pinktober

My 9 Wishes

A couple of weeks ago, I shared 9 breast cancer-related wishes to mark the 9th year since I was told I had breast cancer. Much to my surprise, my friends asked me to make the status public and complete strangers actually shared it. (Wuuuut). So, to kick off another Breast Cancer Awareness month, aka Pinktober, or Stinkober, I want to share these 9 wishes again. However, this time – I’m expanding on these wishes. Get ready for some links, analysis and probably a lot more curse words. I am who I am.

I have 9 wishes I want to make to mark the 9th year since I was told I had breast cancer:

1. I wish for nobody to play the stupid FB “awareness” game for breast cancer this year. It’s dumb, and it fills me with rage when I see it. I see red, not going to lie. My disease isn’t a fun cutesy game.

I have written about this before and I know I’m repeating myself. I don’t care. I’m also going to reshare something Lisa Bonchek Adams (who died from metastatic breast cancer) wrote about this in a January 17, 2013 blog post:

Anyone who has breast cancer and uses your FB status update as an indicator of whether you support their cause is not very enlightened. When I rank “how to help those of us with cancer,” sharing one of these paragraphs as a status update is the lowest possible method of showing support. There are endless ways to do that. I think it actually is the opposite; sharing these status updates makes people feel they are doing something real for breast cancer causes when they aren’t.

I’ve also had it with the “I’ll bet most of my friends won’t share this post” attempt to guilt me in to sharing something like “share this if you think domestic abuse is awful.” “Share this if you think autistic kids are special.” Well yes, actually, I believe both of those things. And just because I didn’t share them as my status update doesn’t mean I do NOT agree with the statements.

Just don’t do it, please. I’d rather you do nothing than share that.

2. I wish for everyone to think before you pink this October. Be mindful that the pink items lining the shelves are not doing anything for breast cancer. They are just using my illness to make some sweet sweet dollas.

Here are the questions that Breast Cancer Action wants anyone to think before buying a pink item (see here for the full blog post):

1. Does any money from this purchase go to support breast cancer programs? How much?

For example, you’re at the grocery store, and you see a pair of pink ribbon socks by the register and you think, “Aw these are cute.” Pick up that pair of socks and look at the packaging. Does any money of your purchase go to … anything? Is there a mention of a charity, even if it’s one that’s problematic?

If the answer is no and that pink ribbon item is 100 percent purse capitalistic greed, do me a favor – don’t buy it. Too many companies profited on the deaths of so many.

2. What organization will get the money? What will they do with the funds, and how do these programs turn the tide of the breast cancer epidemic?

3. Is there a “cap” on the amount the company will donate? Has this maximum donation already been met? Can you tell?

4. Does this purchase put you or someone you love at risk for exposure to toxins linked to breast cancer? What is the company doing to ensure that its products are not contributing to the breast cancer epidemic?

3. I wish for the ability to bitch-slap anyone wearing a “save second base” or “save the tatas” shirt and not be arrested. That’d be awesome. I’m talking a slap like Soap Opera level slap.

I wrote “My Disease Isn’t a Cutesy Slogan” 5 years ago, and my feelings have not changed.

Since I had a double-mastectomy, does that mean I somehow failed since mine weren’t saved? Does that mean I am less of a woman, since I technically don’t have breasts anymore? My body image after my double mastectomy has completely changed, and it hasn’t been for the better. When I see “save the tatas” or “save the boobies,” I am constantly reminded of what exists under my shirt — scars, stretch marks and silicone.

These cutesy or provocative slogans offend me because they reduce women to a single body part — our breasts. The body part that could very well mean our death if the cancer spreads from the breast to other organs (aka stage 4 or metastatic breast cancer). It gives the clear message that the focus should be on saving our ability to be sexually attractive to the opposite sex. Heaven forbid you lose the body part that makes others feel attracted to you, because if you lose your sexuality, you lose your worth.

4. I wish for the media to report on cancer and metastatic cancer ACCURATELY. Nobody dies from breast cancer – they die from metastatic breast cancer (ie when it has spread to other organs). When it’s spread to their brain or lung, it’s still breast cancer.

Nobody ever dies from breast cancer. They die from metastatic breast cancer, which is when it’s spread to a distant organ. It is important to accurately report that someone has died from metastatic breast cancer, so the general public knows there is a difference between breast cancer (contained with the breast) and metastatic breast cancer (spread).

The Guardian reported on Jackie Collins’ death in 2015 but made no mention of the word “metastatic.” The BBC also did not mention the word “metastatic.” Recently, the news reported on the death of news anchor Cokie Roberts, whose family released a statement saying she died “due to complications from breast cancer.” I found little to no mention of metastatic breast cancer or recurrence in the news surrounding her death. She was a veteran news anchor – given her profession, you’d think there would be an accurate reporting on what actually killed her.

There needs to be actual acknowledgement of what kills people when they die from this disease. They do not die from breast cancer, they die from metastatic breast cancer. How can we educate the general public if we don’t even use the proper terminology?

5. I wish that my friends who have stage 4 breast cancer can slap early stagers who call them mean or bitter. I realize two of my wishes are related to slapping people, and I’m okay with it.

Rethink Breast Cancer shared the statistic on their Instagram page that 20 to 30 percent of people diagnosed early stage breast cancer will be re-diagnosed with MBC. Y’all, so many early stagers lost their damn minds.

One person commented: “I think you should honour how this post harmfully triggers many of us. I understand you’re trying to educate but I think there’s a better way than this.”

Yeah…. I’m going to let Judit Saunders field this one and it explains why I feel like stage 4 patients should be given a pass to slapping people:

SO, let me digest what you just said? Because a FACTUAL STATISTIC that many women face as their REALITY is “triggering” & hard to digest we should silence & simply erase any evidence that it exists??? Let that sink in…What in the actual bloody fuck is happening??!! We have regressed this badly with the division between the ebc and metastatic community?? Now, when I’ve been advocating for this disease since having my own metastatic recurrence I feel as though I am fighting for these ill informed-pull-the-wool-over-my-eyes-i-need-to-be-sheltered-by-reality-or-else-I’m-sad population & they have zero clue how our actions may one day save THEIR lives!

And

Did anyone not think that maybe if this disease wasn’t deadly then all you early stagers over there popping your Ativan due to being “triggered” wouldn’t be fearful anymore because people would no longer die? Just stop and THINK about it. THINK…EMPATHIZE…and then THINK about it some more. I don’t know how to make this more understandable. I don’t know how to make it clearer?! I have plenty of early stage friends who get it and stand united with the MBC community, but then when comments propagate to try to shut the MBC community up…ya, you’ve picked the wrong gal for that because I am done. Respect is earned and it’s a two way street. However, many comments simply want us to stop talking about it. We need to hide under a rock and just die apparently or else we have caused people to feel “triggered.” Hypocrisy at it’s finest… Ignorance at it’s peak… Stupidity in it’s lowest form.

See? Don’t you agree that Judit should be able to slap people? Read more of her righteous rant here.

I get being absolutely scared out of my mind of the idea of a recurrence. I get that. Sometimes that fear has paralyzed me, and it’s probably one of the main reasons I got my tush into counseling. It’s a lot. How-the-freak-ever, I still have a heart and the ability to empathize, and I would NEVER tell anyone with stage 4 to stop speaking their truth because they’re doin’ me a frighten. How inconsiderate do you have to be to think that’d ever be okay?

“Excuse me, ma’am. I know you’re a young mother with three young children, but could you please stop talking about your terminal diagnosis? It’s really bumming me out.”

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Just because you don’t like a statistic or a statistic scares you, doesn’t mean that the statistic goes away if you ignore it. Nope, still there. Deal with your fear, shut up, or at least think about what words will come out of your mouth next. Might I recommend therapy?

6. I wish for more people to know that MAMMOGRAMS DO NOT SAVE LIVES. They detect cancer. That’s it. There is no evidence that mammograms have saved lives.

An August 6, 2005 article in The BMJ reported that a US case control study showed that “Breast cancer screening in “real world” situations is not effective in preventing mortality.” The author of the study found, “We observed no appreciable association between breast cancer mortality and screening history, [regardless of age or risk level].”

Nine years later, a February 12, 2014 Reuters article reported that, “A new study has added to growing evidence that yearly mammogram screenings do not reduce the chance that a woman will die of breast cancer and confirms earlier findings that many abnormalities detected by these X-rays would never have proved fatal, even if untreated.” The study, which studied 89,835 women aged 40 to 59 over a 25-year period and was published in the British Medical Journal, “found no reduction in breast cancer mortality from mammography screening . . . Neither in women aged 40-49 at study entry nor in women aged 50-59.”

I am not saying that anybody should stop getting mammograms. There’s no really other way to get your screening. What I am saying is that we need to see mammograms detect cancer – that’s it. Mammograms do not save lives.

7. I wish for everyone to realize that early detection does not always mean you “beat cancer.” There are so many women whose breast cancer was caught early stages who went onto become metastatic. It’s not about when you catch the breast cancer, it’s about the tumor biology.

Catching breast cancer early surely does help, but it is not a guarantee that your cancer will never come back metastatic. I personally know many women whose breast cancer was caught early stage and who later were diagnosed with metastatic breast cancer. Some of those women have since died.

An estimated 20 to 30 percent who were diagnosed early stage will be later diagnosed with metastatic breast cancer. However, we don’t know the exact numbers because Surveillance, Epidemiology and End Results (SEER) does not track information pertaining to a metastatic breast cancer recurrence. SEER tracks those who were diagnosed Stage 4 right off the bat (aka de novo). The Metastatic Breast Cancer Network explains it this way:

My friend Shirley was diagnosed with early-stage breast cancer in 1991. Her cancer came back 12 years later—she has been living with Stage IV breast cancer for the past 13 years. For statistical purposes, Shirley and other patients like her are tallied as successfully treated for early-stage breast cancer. Only upon their deaths will they be counted as metastatic breast cancer patients.

The 20 to 30 percent statistic could be higher or lower, I can’t say for certain. If I had to guess, I would say the stat is probably much higher. I do know that until we know all the data, how could we ever say for certainty that early detection saves lives when we don’t know what happens to the woman 7 or 15 years later?

See here for more information.

8. I wish for everyone I know to understand why I don’t call myself a survivor or say I beat this, especially now that I know I have a genetic mutation. I’m NED (no evidence of disease) but my body works against me. I don’t see this as a battle or a fight. This is my body, and this is what it does.

I recently wrote about my mutant diagnosis here.

I want to say fuck you to anyone who wants me to see the positive in what’s a very much negative situation. There’s no putting lipstick on this pig. Let me say this very clearly – I’m allowed to feel angry and sad. If my anger and dark mood makes you feel uncomfortable and icky on the inside, those are your feelings to manage. Not mine. I don’t have to put a fake smile on my face to make anyone feel comfortable.

I looked into a crystal ball, y’all, and all I saw were a never-ending parade of doctors visits, MRIs, surgeries, and whatever medical procedure is necessary to keep me upright. Why can’t we let sucky things just suck? It’s okay. I’d be a robot if I could be given this diagnosis, put a smile on my face, and go, “It’s okay, but things happen for a reason?”

I have no desire to be anyone’s inspiration porn, and my anger isn’t an invitation for any pity, as well. I’m not feeling sorry for myself. I am acknowledging my feelings, and right now, those feeling are pretty much anger and despair.

9. Finally, and this is a special wish because I used to believe I’d be gone by the time I was 40 like my mother – I wish for continued good health for as many years as I can and to never ever take it for granted while I have it.

Why I Am Still Anti-Komen

In early 2014, I wrote a blog post about why I was against breast cancer juggernaut Susan G. Komen Foundation. It was shared, pinned, tweeted, discussed. While the blog post was shared and liked by many, I don’t know the extent of the reputation hit I may have inflicted upon Nancy & Co. I truly hope I inspired many to donate their money to much more honorable charities.

Well, now I am here to report on where Get Up Swinging and Susan G. Komen still stand. To the surprise of no one, I am very much still anti-Komen, and I do not see that changing any time soon (please see below for a list of organizations doing amazing work).

I do not plan to re-hash all the same reasons I have already cited. That’s the beauty of Nancy & Co: they keep giving us new and improved reasons to despise them and what they are doing to stand in the way of real change. Today would have been my mother’s 69^th birthday. She died at the age of 40 from metastatic breast cancer.

Nancy, Nancy, Nancy

In a November 5, 2015 letter to the New York Times, my favorite former CEO was not happy about a very well-reasoned article, “A Growing Disenchantment With October ‘Pinkification,’”also published in the New York Times, which had valid points of views from those not wearing Pink Ribbon glasses. Did Nancy listen to her critics and go, “Man, we’ve really divided the community for which we are trying to help” Did she do any self-reflection and think, “I need to turn my focus back on the promise I made Susie.”

Of course not. Nancy didn’t address any of these real pressing issues currently happening in the breast cancer community. Instead, all she did was regurgitate Komen’s history and ends her op-ed with the tone-deaf statement: “Pink Ribbons matter!”

The Pink Ribbon has enabled Komen to stage Races for the Cure with more than 1.5 million participants, partnerships in more than 150 countries and the engagement of more than 100,000 volunteers.

Oh boy, Nancy. This is another example of why I think you are an evil woman. You don’t get it, and you don’t want to get it. What about those who are on their fifth line of treatment or waiting to get into a clinical trial in hopes for another six months with their families? All you care about is your money-making Pink ribbon empire and your meaningless ribbon, aka the symbol of your life’s wealth.

There was one point in the article, and it’s an excellent point and one that you would think would make The Breast Cancer Charity go, “Holy shit, we seriously have to fix this!”

For all the awareness, they note, breast cancer incidence has been nearly flat and there still is no cure for women whose cancer has spread beyond the breast to other organs, like the liver or bones.

So, congratulations on patting yourself for your ability to rally others around a cause that has affected so many people. But what about the 40,000 dying every year, a mortality rate that hasn’t changed in two decades?

No, Nancy. Pink ribbons do not matter. The lives of the 40,000+ dying of metastatic breast cancer each year in the U.S. matter. Their partners, their children – the lives of all who have been diagnosed and will be diagnosed – they matter. They should be the priority and Nancy & Co. act as if these valid complaints are mere annoyances, like we are a bunch of Internet loud mouths. The average lifespan of someone diagnosed with stage 4 is 33 months, and a pink ribbon isn’t going to change that. We need change. Now.

2015 marks the first time Komen lets you make a donation to metastatic breast cancer research

This past October marked the first time Komen allowed its donors to allocate where they want their money to go, and research toward metastatic breast cancer was one of the options. It’s 2015, and this is the first time they have done this. Why has it taken so long? Could it be that the Komen push-back from all of us Internet loud mouths made some Komen folks realize that their priorities are jacked up?

However, this option only came about mid-October, and it was initially advertised as an option only available until the end of October! What the deuce? Did I miss the memo that metastatic breast cancer goes away when the calendar reaches November 1?

I guess they listened to others also going, “Um, what? This is only an option until October 31?” and changed their minds. If you make a donation to Komen, you can still choose your donation to go toward metastatic breast cancer research.

Of course, though, this is still Komen, and they will always find a way to take your money, as pointed out by Bravery, Grace and Badassery.

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Does Komen really need that much financial help for its administrative costs that it still insists on taking funds for metastatic breast cancer research? Get the hell out with this nonsense.

This organization has been claiming to be in this “for the cure” for the previous three decades. Shouldn’t research for metastatic breast cancer be the primary focus so many, many years ago? The only type of breast cancer that kills is metastatic breast cancer.

Komen likes misleading statistics

During Pinktober, the Susan G. Komen Foundation posted a pastel, feminine looking graphic with words and numbers together, which would lead you to believe that we are WINNING this fight on breast cancer:

Ugh. Ugh. Ugh some more.

The five-year statistic is bull, it’s just plain bull. It’s a misleading statement for a national organization to make, and all it does is make the general public LESS aware about breast cancer. I’m sure all the Komen supporters saw that graphic on Facebook and said, “Yes, we are winning! Well done, everyone. Well done.”

Folks, if you’re reading this, please know that you can still have a breast cancer recurrence after five years. The cancer doesn’t just peace out once it’s been five years since your initial diagnosis. We have been led to believe that five years is this magical number and you showed cancer who is boss. Realistically, though, you can recur 5, 10 or even 15 years after your initial diagnosis, so you can still die from breast cancer but be counted in this bogus statistic. Theoretically, someone can have an early stage diagnosis in 2012 and have a metastatic recurrence in late 2015. If they are still alive in 2017, then they are counted in that statistic, even if they die on January 1, 2018. Do we tell them as they are dying, “Way to go, Jane, you made it past five years since your initial diagnosis. You are a winner.”

Komen, for the love of Pete, quit sending misleading statements out to the general public that we are winning when the mortality rate hasn’t changed in the previous two decades.

Check out my friend, AnneMarie, crunching some numbers.

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I couldn’t agree with this any more.

Frankly, I’m tired of breast cancer being portrayed as the feel good cancer and being held up as a shining example for early detection which works sometimes or even most times but not all the time and that part of the messaging is conveniently left of of every discussion about early detection. It’s buzzkill. It detracts from the message that mammograms are unilaterally helping save lives. Mammograms are detecting cancer earlier and earlier thanks to constant improvements being made in imaging devices but early detection is just that. Early Detection. And early detection is not a guarantee.

Komen and its representatives treat metastatic breast cancer patients like a nuisance

Beth Caldwell, who writes over at the Cult of Perfect Motherhood, recently attended the San Antonio Breast Cancer symposium. She wrote about her encounter with a member of Komen’s Scientific Advisory Board:

This week, Kelly Shanahan and I had a conversation with Powell Brown, a member of the scientific advisory board for Komen. We explained to him that the metastatic community is largely dissatisfied with the small percentage of funding that Komen spends on research, since research is the only thing that will save our lives. I told him that they need to change their split between the national and the locals so that more money is available for research. His response was that he doesn’t believe Komen will change that ratio, and that Komen would not begin funding more research until the metastatic community gets behind Komen. He said that if we want Komen to spend more on research, we should participate in their fundraising efforts. He said that more fundraising would mean more money available for research. I told him there was no way that our community could get behind an organization that chooses to spend its money on things other than saving our lives, especially given that there are other organizations that spend a much larger proportion of their funding on research, including BCRF, which now outstrips Komen in dollars spent annually on research. His response was that if that’s how we feel, we should just support BCRF instead. And he walked away.

This is what a national leader for Komen feels about the metastatic patient. We are disposable because we don’t fundraise for them. Do not let them fool you into believing they care about us. Our lives don’t matter to them. And that’s why Komen is irrelevant to us. We must and will save our own lives.

Holley Kitchen, whose direct and moving video went viral, also had an encounter with a Susan. G. Komen foundation representative:

Susan G. Komen Foundation has proven time and time again that it cares about money and donation$, and the lives of those with metastatic breast cancer are secondary. Metastatic breast cancer is what killed Susan G. Komen, a real woman who died way too young. Yet when those with stage 4 have stood up to the organization and its representatives, they are told time and time again that maybe Komen will care if they begin raising money for them.

So what’s the point of my anti-Komen diatribes?

Finally, just because I think Komen is an awful organization that has gone way off tracks, it does NOT mean I don’t want you to stop donating toward breast cancer research and programs. There are so many wonderful organizations that have a mission statement, and (gasp) they are sticking to it.

Why do I keep hating on Nancy & Co.? Welp, I want to highlight organizations that are awesome and making a big roar out there. Please consider throwing your support behind these organizations.

Metavivor – 100 percent of your donations goes toward researching metastatic breast cancer, and they raise money by selling merchandise.

The IBC Network – Did you know that breast cancer can occur without presenting as a lump? Inflammatory Breast Cancer is mostly detected when the cancer is late stage or tragically, stage 4. It’s an aggressive cancer, and it’s definitely not one that’s ever discussed during our annual Pinktober. Terry Arnold over at IBC Network is a tireless advocate.

Met Up – This is an activist group, which was co-founded by women who have metastatic breast cancer. Read their goals, get involved. Help their voices be heard. You cannot call yourself a true breast cancer advocate if you only want to help the “survivors.”

We have so much work that needs to be done. Recently, the New York Times reported on October 29, 2015 that the incidence rate between white women and African-American women are now equal for the first time. Previously, women of color were less likely to be diagnosed with breast cancer, but more likely to die from the disease. Now that the incidence rate is equal, well, does that seem like good news for women of color? Not in the slightest.

Over all, a black woman given a breast cancer diagnosis is 42 percent more likely to die from the disease than a white woman with breast cancer. An analysis of breast cancer mortality trends in 41 of the largest cities in the United States, published last year in Cancer Epidemiology, found that in some cities the risk is even greater. In Los Angeles, a black woman with breast cancer is about 70 percent more likely to die from the disease than a white woman is. In Memphis, black women face more than double the risk. Black women also are less likely than white women are to be given a diagnosis of early stage disease, and more likely to be given a diagnosis with later stage, and less treatable, tumors, according to the report.

Don’t give up on the cause, even though Nancy & Co. have lost their way.

Beware. Prepare.

Things that make me go rage in the night

It’s not even October yet, and I’m already dreading the upcoming pink-washing assault. I despise with a passion of a thousand fiery suns the following phrases: save the ta-tas, save the boobies or save second base. I am pretty sure if I ever saw someone wearing a t-shirt or some kind of apparel with those phrases on it, I might have a rage stroke. That’d be it for me. Dunzo.

Here lies Lara. Her rage caused her to burst into flames.

When it comes to breast cancer, screw the ta-tas, boobies or second base. The focus should be removing the cancer from the woman’s body, and oftentimes that means a single or double mastectomy. You know – not saving the breasts.

After all of my doctors recommended to me at my one-year checkup to have a double mastectomy because it looked like my cancer was attempting a come-back, I didn’t look at them and say, “No, I don’t accept your recommendations. You figure out a way to save my breasts. You hear me, doctor? Whatever it takes, and I mean whatever, you save my breasts!”

Hell no. I gave them one shot when I had an initial lumpectomy, but that turned out to not be enough. I didn’t want to have a double mastectomy (though who does?). I sobbed the night before my surgery. I asked my doctors repeatedly if this was the right decision to make. It’s a shitty situation to find yourself in, to have to decide to surgically remove a body part. I felt I had no choice but to have this surgery, and it destroyed me. If it was between me and my breasts, then of course I’m going to pick my life.

Since I had a double-mastectomy, does that mean I failed? Does that mean I am less than a woman since I technically don’t have breasts anymore, although I do have fake ones? Where’s the “It’s Okay You had a Double Mastectomy” awareness campaign? Where’s the “Free Side Hugs because you had a Double Mastectomy” campaign? Someone needs to start a “It’s okay – you’re still beautiful after a Mastectomy” campaign. I know, I know. Not catchy enough. Come on, Huffman. Think!

These cutesy or provocative slogans are offensive to me because they reduce women to a single body part – our breasts. The body part that could very well mean our death. It gives the clear message that the focus should be on saving our ability to be sexually attractive to the opposite sex. I did have a guy, some friend of a friend, ask me, “Did they save it all?” after I said that I was undergoing treatment for breast cancer.

His question floored me, so of course I had to berate him for saying something so stupid and offensive. “Save it all? You mean my breasts? Wow… Wow, congratulations. You’re the first person to ask me something so incredibly offensive and just weird.” The guy sputtered and left me alone, rightfully so.

If someone is reading this and thinking, “Lighten up. If it raises awareness, then who cares how it’s done?”

Well, I care. This disease took my mother’s life, and it has left me forever scarred. Why should I have to forfeit my dignity for the sake of awareness? Breast cancer can take your breasts, your hair, your sex drive and/or your life. It’s a deadly disease that claims approximately 40,000 lives each year, but time and time again, the focus is about saving our sexual desirability. Fuck that noise.

Seriously don’t mess with me.

Also, why can’t people say breasts? It’s always boobs, ta-tas, jugs, hooters, rack, boobies, etc. Dear goodness, I had breast cancer – I did not have boobie cancer. “What type of cancer did you have, Lara?” “I had stage-one boobie cancer.” Lolwut? A family member close to The Boyfriend just died of prostate cancer. He didn’t have wiener cancer. Seriously, can we discuss a disease with a sense of integrity and maturity?

For four years now, I’ve been waiting for someone to really explain to me how shirts like these increase awareness for breast cancer in the first place. To me, they just raise awareness to the fact that women have breasts.

One of the slogans I have never understood was “save second base.” Why is it even appropriate to use a slang term for getting felt up, because that’s what second base means, and use it for breast cancer awareness campaigns? “Let’s save all the boobies so a woman can always get felt up!” After my double mastectomy, I have zero feeling in my chest, so second base has been crossed off for me. You know what, though? Screw second base – hit a triple or just run home. There, problem solved.

Besides, how is wearing a shirt that says “Save the Hooters” increasing awareness for anything? How does a men’s shirt offering to check ‘em for you fight the good fight? Oh, this one is my personal favorite – a “funny” breast cancer awareness shirt for men. (Yeah, dude. Breast cancer is a riot. I laughed all the way to the chemo ward.) Or how does a men’s shirt telling us to SAVE MOTORBOATING help a patient undergoing chemo? It doesn’t, obviously, but it apparently challenges young men to try to think of the most offensive breast cancer awareness stunts, like this one. You know, because boobs.

The reality of it is that these campaigns are the result of folks wanting to make tons of money by selling T-shirts by vaguely saying money is going to a “good cause.”

A November 26, 2012 Post-Tribune article reported that a marketing presentation from the for-profit company, Boobies Rock! (gross), put its “gross revenues for 2011 at about $1.1 million with net revenues of $400,000 and unspecified ‘total commitments’ at just over $250,000.” The following year, a July 8, 2013 9News.com article stated that Adam Shryock, used “Boobies Rock! profits to buy a BMW, subscribe to online dating service friendfinder.com, and even pay bar tabs and Molly Maids cleaning service bill.” The article also reported that “some breast cancer charities supposedly ‘partnered’ with Boobies Rock! Received donations as small as $100.”

Yeah.

Breast cancer isn’t a joke, and what I and so many others have been through isn’t funny. It’s time we start taking a life-threatening disease seriously and showing respect and compassion to those who are currently going through or have been through treatment.

What Does “Breast Cancer Awareness Month” meant to you?

Before we all know it, Pinktober is going to rear its ugly head once again, and everywhere you look will be pink ribbons – from the grocery store, to chain restaurants and maybe a part of your downtown running path is now covered in bras (that one made me want to set the bras on fire) – all for the sake of “awareness.” I know I have gone on and on and on about breast cancer awareness month. I think pretty much everyone who knows me or who is familiar with Get Up Swinging knows how I feel about this month.

Well, I wanted to ask other folks with cancer, any cancer, the question: “What does Breast Cancer Awareness Month mean to you?” The responses mostly came from other women who have had breast cancer since that’s the disease I have, but there responses from others who have undergone treatment for cancers other than breast.

Here are responses from those who have metastatic breast cancer:

“Even before I was diagnosed with breast cancer I loathed October. No matter where you go there is a sea of pink, ribbons, t-shirts, key chains, etc. What started out as something good had morphed into a retail/marketing machine that line the pockets of those ‘bringing awareness.’ Now after living with Stage 4 breast cancer for the past year, I understand how serious this is. There isn’t a female on this planet that isn’t ‘aware’ – that doesn’t ‘feel their boobies.’ Every person diagnosed with breast cancer COULD develop metastatic disease. Early detection does not guarantee safety. What will save more of the 40,000 people that will die from breast cancer each year is research. And that means money for research – not awareness. What Komen and the others give to research is sickening. Nancy Brinkman should be ashamed of what her memorial to her precious Suzy has become. More lives could benefit from research and the clinical trials that are born of research. Until we can change the perspective of the public at large this will be an ongoing disconnect and more people will die – like me.”

“Nothing,” and then: “I have metastatic breast cancer. When I die, I will not have lost at all. Another reason October grosses me out: battle metaphors.”

“I think my stance has only grown stronger since being diagnosed stage 4 in the last 12 months. I have a really hard time going grocery shopping. I’m already getting the stupid emails about playing secret games. How does that raise awareness? I’m trying to come up with something for [metastatic breast cancer] similar to the ALS Ice Bucket Challenge. We’ve just got to come up with something good.” The same friend then said, “I still really just want to punch that Komen lady in the throat. Do you think that will bring more awareness? I bet it’d do more for mets than a pink frying pan. (I’m totally kidding…. Sort of.)”

Here are the responses from those who had breast cancer, aka the people who we’re supposed to celebrate during this month (allegedly):

“Hell.”

“Enough awareness already. Time to focus on research for those with mets. I used to like pink. Sometimes now I struggle with wearing it. Oh, and it makes me want to throat punch people.” It will shock y’all that wasn’t something I said, but damn, it’s something I truly feel.

“I cringe every October now. SGK has created an atmosphere wherein people actually resent breast cancer charities – even the good ones. It makes me very sad. I used to like pink, too. Now it just makes my butt pucker.”

“Absolutely nothing. It’s a disgusting marketing ploy.”

“It means companies profit off of a disease (mostly).”

“That I’m going to flip the fuck out the next time someone posts something about not wearing underwear or using their boobs to get out of a speeding ticket because they are playing a ‘fun’ breast cancer awareness game. And October, the month that used to be my favorite, is now the month that I won’t be able to, even for a minute, forget I had breast cancer.”

“Well, it means breast cancer awareness for everyone else, but for me, that’s every month every day.”

“Breast cancer is sadly something we’ve all heard of. We’re all aware of it each October because it’s shoved down our throats. I’m all for education of things like triple negative or IBC or mets, etc., but buying a pink frying pan isn’t going to do that either. By the way, I don’t think that pink is a vile color; I do love it, but I hate all the negative bullshit that it stands for now. Hopping off my soapbox now….”

“I guess the month is more personal to me. I got THAT phone call from the breast surgeon on October 1, 2012 telling me my biopsy was malignant. ‘Sorry for the phone call, but we need to act on this PDQ.’ So, two weeks later, I’m in surgery for seven hours, having a double mastectomy and tram flap. I’m sick of pink. I’m sick of Tamoxifen. I hate cancer.”

“Most people are unaware or ignorant to anything until it happens to them or someone they love. I feel like I’ve been under the breast cancer cloud since I was about 13 and my aunt, who was like my second mother, was diagnosed and had her mastectomy. I don’t know if her struggle was a warning to me, so I’d catch mine earlier because she ignored hers for a while before she got checked. . . . I try to see everything for the benefit it could or does have, but the little awareness ‘games’ piss me off because people think they are doing something when they really are not. If the month gets more women to do self-exams, check up on something suspicious, get a physical, or donate time or money who would’ve never thought to do before, I pray that is the good that comes out of it. It’s kind of a hard month, but so is every day once your life changes that little bomb of a seed has been planted in your mind and body.”

“I definitely feel the attention has to shift from awareness to cure. I think we all are aware now. However, maybe any attention to the disease is good attention? I will tell you though it pisses me right off when I see crap like … For breast cancer awareness I will be brave and post a picture of myself on Facebook without makeup…. Puuuuleeeze. Personally, those who post those self-serving pictures (oh girl, you’re gorgeous without make up, wish I could look half as great) did abso’f ing’lutely nothing to help my treatment go more smoothly – physically or mentally. If they want to see the face of bravery, I suggest they take a field trip to the waiting room of the women’s cancer center and look at the beautiful faces there with their heads covered with baseball caps, scarves, wigs or nothing. I encourage them to look into the eyes of those women, which might be brimming with tears because they were just given the news they did not want to hear, or tears of relief because they did. Regardless of age, socioeconomic status, ethnicity or any other defining factor. These women and their families and support systems have hearts full of hope. So my hope is that October brings meaningful advances in the cure and prevention of breast cancer.”

“I don’t have a lot of attachment to it. I went to a nice breast cancer fundraiser last night with all the pink bells and whistles for the cancer center that saved my life and had a good time and made some donations. But, there was a lot of ‘stuff’ there, that had I been in the throes of treatment or diagnosis, would have absolutely pushed me over the edge. So, I have awareness of the real deal! I do feel that I’ve helped shape some fundraising events so that they don’t push those buttons for others by creating awareness myself. I’m thinking it is a good month for me to keep being true about how it all is. At the same time, I can stay positive about the whole thing because my doctors told me the money that is raised truly helps patients and research and I believe that. Plus my mom with Alzheimer’s only likes to wear hot pink…which is pretty weird since my sister and I are both breast cancer survivors. She doesn’t consciously understand the significance. I think I will stay away from the pink cupcakes though; and I will definitely be remembering those we have lost who no longer can pink partake. . . . I admit, I did buy my mom a pair of breast cancer awareness sneakers because they were hot pink. I think like a penny supposedly goes to help somebody. *snark*”

Responses from people who had cancer, but not breast cancer:

“Well, I don’t have that type of cancer, but to me, it means I expect to see women without cancer showing off their boobs and bras and women with cancer not feeling great about being flooded with images of boobs.” When I read this response, I actually shouted “YES!” loudly at my desk.

“Blegh. What about the other kinds of cancer? Pinkification stinks.” I agree.

“I wish oral CA had the same publicity as breast CA.”

If those with breast cancer are expressing disgust and resentment at the very month that is supposed to celebrate them, then changes need to be made. We need to stop trivializing a deadly disease by wrapping it up in a pretty pink bow. Men also get breast cancer, and I couldn’t even fathom how horrifying Pinktober would be to a man with breast cancer. If a friend sends you an invite for the stupid annual Facebook game so many people mentioned above, respond with links from those with cancer as to why these games are offensive.

Most of the time people mean well, but I have come across so many people who want to use Pinktober as an excuse to have a girls’ night out and drink (dumb) or just say boobies or knockers or hooters. We need to take breast cancer seriously, even if deals with a body part that can reduce grown adults into immature 10-year olds.

I asked Lori Marx-Rubiner, the president of Metavivor, how can anyone help a loved one going through breast cancer treatment, and here is her response:

What can people do?

Give of themselves – run errands: dry cleaner, market, carpool

Make a meal – check first abt dietary restrictions

Keep patient company during treatment

Come by with a good movie

Check in 6-7 days after treatment, when the attention has died down

If you don’t have a specific person in mind-

Volunteer at a treatment or support center

Organize a local fundraiser

Sign up for Army of Women

No time?

Send a gift card – Jamba Juice, bookstore, Netflix subscription, local restaurant that delivers

Donate to research or directly

Why I am anti-Komen

Recently, a friend of mine sent me a message on Facebook, asking me why I hated Komen so much. I sent her a five-point, abridged version with my reasons, but I wanted to really write a well thought-out reason as to why I think Komen is a horrible organization.

Komen is allergic to reality

Thanks @Kohls 4 supporting @SusanGKomen! Breast cancer's the pink elephant in the room:let's not ignore it! #TalkPink http://t.co/8nUxy8jdCL

— KomenKnoxville (@KomenKnox) March 3, 2014

Really? Oh really? Breast cancer is the pink elephant in the room, and let’s not ignore it? Since when is breast cancer ever ignored? It’s not the pink elephant in the room. It’s the pink elephant on a rampage, mowing down innocents in the street. We have an entire month devoted to so-called breast cancer awareness. Every time I went into a retail store in the months of September and October, I was assaulted by crap with pink ribbons.

At least I can disinfect my hands after all this pink ribbon garbage.

Breast cancer isn’t being ignored. You know what’s being ignored and the real elephant in the pink room (see below for more on this reference): metastatic breast cancer, aka Stage 4 breast cancer, which leads me to….

Komen has ignored those living with metastatic breast cancer disease.

According to Peggy Orenstein’s April 25, 2013 article in The New York Times called “Our Feel Good War on Breast Cancer,” she wrote:

Last October, for the first time, Komen featured a woman with Stage 4 disease in its awareness-month ads, but the wording carefully emphasized the positive: “Although, today, she has tumors in her bones, her liver and her lungs, Bridget still has hope.” (Bridget died earlier this month.)

Komen has been around for decades, and it was only in 2012 that someone living with metastatic breast cancer was in any of its advertisements. I am very sorry that Bridget died at such a young age, and she was definitely entitled to her hope and mindset. But I hate that even when someone with Stage 4 is in a campaign, the wording is still positive and upbeat because heaven forbid, you get angry or upset at your diagnosis. Angry women and men with metastatic breast cancer need not apply.

An October 11, 2012 Today.com item actually interviewed those with metastatic breast cancer about “Pinktober.” (Side note: glad some members of the media are actually giving voice to those living with metastatic breast cancer.)

For Stage IV patient Kimala Clark, 47, of Fort Wayne, Ind., it feels like a betrayal to walk into a grocery store and be “bombarded with pink.”

“I can’t celebrate because I’m not a survivor,” said Clark, who was diagnosed in 2010 with an aggressive Stage III cancer that quickly advanced. “There’s not a cure.”

Isn’t that heartbreaking? Later in the article, it mentions how during the entire month of October, only one day is dedicated to metastatic breast cancer:

In addition to questionable product endorsements, late-stage patients protest what they believe are unfairly limited funds for metastatic breast cancer research and a cursory focus on the end stages of the disease.

In all of October, for instance, only Oct. 13 — Metastatic Breast Cancer Awareness Day — focuses on late-stage disease, Clark says.

“I really would have liked to see that be more than one day. I think it’s sad that there’s 31 days in October and we have one day,” she says.

Those living with and dying of metastatic breast cancer should be at the absolute forefront of the breast cancer discussion. No ifs, ands or buts. That’s it. Yeah, I get those who want to celebrate their survivorship. Go right ahead. While you’re celebrating, remember and response those who were diagnosed Stage 4. Your celebrations should never quiet those who are Stage 4.

One of the most gifted bloggers I have come across is Ann, who writes “Breast Cancer…. but doctor I hate pink?” I think everyone should be reading and following Ann. She wrote a gut-punching, to-the-point blog called “Pinktober from a Metastatic Point of View”:

Metastatic women? Almost nothing. I believe there are fewer than ten support groups for advanced cancer listed in the US. Despite our differing needs, we are lumped in with all breast cancer groups, and worse, we have, in droves, been turned away from early stage groups, pulled aside and whispered to by coordinators, saying “you will frighten the early stage women.” There are very few books for metastatic women as compared to the hundreds for early stage. Even online support groups end up with women fighting about whether early stage women should be allowed to post in the Stage IV sections. Many argue that they should be allowed there because they could have metastatic cancer any time, as if that means they understood what it is like now. There seems to be little available for our emotional needs.

We don’t fit in with our “pink sisters.” Our concerns are very different, yet we are expected to be just like them, after all, it’s breast cancer. Alone, we are left to deal with real issues of life and death.

Who has created this environment where those with metastatic breast cancer feel marginalized and told to go away? Susan G.-freaking-Komen.

Let me go back to the Pink Elephant now. Here’s the pink elephant ad again.

Hey, guess what, Komen’s corporate sponsor here – Kohl’s – they co-opted the campaign from Metavivor, a small charity which dedicates 100 percent of its money received to funding research. From Metavivor’s blog:

The Elephant in the Pink Room is not merely a clever slogan, it represents the core of our work and what we stand for. In our campaign, which originated in 2012, the pink room represents the primary breast cancer community which has more funding, recognition and attention than any other disease. Primary breast cancer is hardly a pink elephant – women cannot escape that breast cancer conversation. The real elephant is metastatic breast cancer, the dark side of breast cancer that no one wants to acknowledge or talk about. As our Elephant in the Pink Room campaign states: “In the ‘pink room’ of the breast cancer conversation there’s an elephant being ignored – we the 30% of patients with breast cancer who metastasize”.

This graphic was made by Christina, whose sister Vanessa died of metastatic breast cancer in February 2014 at the age of 32.

If you’re on Twitter, please go and occupy Kohl’s and Komen’s hash tag #talkpink.

Also, isn’t it telling that Komen and its partners can use the campaign and messages from other charities, but no no no, don’t use “for the cure”?

Komen sues smaller charities who use “for the cure.”

A June 1, 2011 Star Tribune article reported that Komen sent a cease and desist letter to a small non-profit which raised $30,000 to fight breast cancer.

Sue Prom helped organize the “Mush for a Cure” sled-dog race to raise money to fight breast cancer five years ago, a fundraiser that was humming along nicely until it received a letter from an attorney for the organization Susan G. Komen for the Cure.

Komen, best known for its pink ribbons, Mother’s Day runs and other mega-fundraisers for breast cancer research, asked Prom to stop using the phrase “for a cure” and to halt its request for a Mush for a Cure trademark.

“It was like, ‘You’ve got to be kidding,'” said Prom, whose all-volunteer fundraiser outside Grand Marais, Minn., raised about $30,000 last year.

Do you think individuals who donated to Susan G. Komen foundation knew their money would be used to sue other charities who want to raise money like Prom was doing? Here’s the kicker? Once national news shone a spotlight on Komen’s bullshit move, they backed off.

Komen dropped its objection to the dog-sledding fundraiser earlier this year, Prom said, shortly after NBC News highlighted the plight of Mush for a Cure and a New York group called Kites for a Cure. In April, a certificate arrived in her mailbox giving her the trademark for “Mush for a Cure.”

I doubt Komen changed its mind out of the goodness of its heart. Oh no. Bad publicity would affect its donations and bottom dollar, and of course that cannot happen. An August 5, 2010 article in The Wall Street Journal stated that Komen went after a small charity dedicated to raise money to fight lung cancer.

Last year, [Mary Ann] Tighe’s Uniting Against Lung Cancer got a letter from Komen requesting it change the name of the charity’s “Kites for a Cure” fund-raiser, a beach event featuring hand-decorated kites, to “Kites for a Cause,” or another name. Komen later warned her against any use of pink in conjunction with “cure.”

Ms. Tighe dug in her heels. She refused to change her group’s name or declare pink off limits even though, she says, her group hadn’t used the color. “We don’t want to be the color police,” says Ms. Tighe, who didn’t feel she was poaching Komen’s slogan.

But as the legal battle ensued, her group agreed to a truce where it would limit the use of the event name to lung-cancer activities, and it promised to stay away from the pink ribbons made popular by Komen. [Jonathan] Blum [Komen’s legal counsel] characterized the negotiations as “cordial and productive.”

Seriously.

Komen’s CEO and founder, Nancy Brinker, has made a lot of money

According to Komen’s website:

Nancy G. Brinker promised her dying sister, Susan G. Komen, she would do everything in her power to end breast cancer forever.

I wonder if that promise included Ms. Brinker getting paid. I mean, girlfriend got seriously paid. Dolla dolla bill, y’all. A May 3, 2013 Dallas News article announced her payday:

The nonprofit’s latest 990 IRS filing shows that Brinker, founder and CEO, made $684,717 in fiscal 2012, a 64 percent jump from her $417,000 salary from April 2010 to March 2011.

The filing says Brinker devoted 55 hours to the cause each week, giving her an hourly rate of $239.40, roughly twice the salary of Komen’s chief financial officer Mark Nadolny or former president Liz Thompson, who left the organization in as a result of the brouhaha.

News outlets compared her salary to others in a similar position.

Ken Berger, president and CEO of Charity Navigator, which evaluates and rates charities, called Brinker’s salary “extremely high.”

“This pay package is way outside the norm,” he said. “It’s about a quarter of a million dollars more than what we see for charities of this size. … This is more than the head of the Red Cross is making for an organization that is one-tenth the size of the Red Cross.”

The American Red Cross had revenue of about $3.4 billion, while Komen’s was about $340 million last year. Red Cross CEO Gail McGovern makes $500,000, according to the most recent financial documents available for the charity.

Way to honor your sister there, Nance.

Lastly…

Komen has yet to embrace this thing called science.

Komen has sold the myth that mammograms save lives and the world needs more mammograms and mammograms for everyone! Get one soon or you’re going to die…. wait, what?

This is an actual ad from Komen, and you know what’s wrong with it? First, the five -year survival statistic for breast cancer when caught early is not 98 percent. That’s a five-year survival statistic for Stage 0 or DCIS (aka pre-breast cancer). Technically, my breast cancer was caught early – Stage 1. However, since my cancer was invasive, I still have about a 25 to 30 percent of developing metastatic breast cancer. Catching breast cancer early is not a 100 percent guarantee one will never have to deal with metastatic breast cancer. Unfortunately, 30 percent of those who had early stage breast cancer go on to develop metastatic breast cancer.

Rachel Cheetham Moro, the blogger behind Cancer Culture Chronicles and who died of metastatic breast cancer, had this to say about Komen and its campaign:

How dare Komen so FALSELY suggest that a screening mammogram is all it takes to avoid metastatic breast cancer? How dare Komen so CRUELLY suggest that “not getting screened for breast cancer in time” would be THE reason and the FAULT of the person with metastatic disease who misses out on all the experiences and joyous events of a long and healthy life that so many others take for granted? How dare you, Komen? How dare you?

Here is a great analysis, published on October 3, 2012, on the blog Pink Ribbon Blues and written by Christie Aschwanden:

Komen isn’t wrong to encourage women to consider mammography. But they’re dead wrong to imply that “the key to surviving breast cancer” is “you” and the difference between a 98% survival rate and a 23% one is vigilance on the part of the victim. This message flies in the face of basic cancer biology.

Between 2004 to 2009, Komen allocated 47 percent of it $1.54 billion toward education and screening. Much of its education messaging promotes the same false narrative as its ads, which means they are not only not furthering the search for a cure, they are harming the cause. By implying that the solution to breast cancer is screening, Komen distracts attention from the real problem, which is that way too many women (and men) are still dying of breast cancer, and screening is not saving them. We still can’t prevent breast cancer, because we don’t know what causes it.

To summarize, I’m not against Komen because of one thing or two things. It’s more like a handful of things that have led me to know with all my heart and conviction that Susan G. Komen is the problem, not the solution. I believe Komen began with good intentions but has morphed into this pink ribbon behemoth. Women (and men) are dying from this disease, and we need to refocus (fuck awareness – WHO ISN’T AWARE OF BREAST CANCER?). They deserve better, much much better.