Backbone

Backstage at a dance recital when I was in the fifth grade, two girls took a toy away from me and decided to play keep away.  They tossed the toy back and forth with me in the middle yelling, “GIVE IT BACK.”  When my protests didn’t yield the result I wanted, I stomped on one of the girls’ foot and shrieked, “I said… GIVE IT BACK.”   Since I stomped on her foot with my high-heeled tap shoe, she quickly handed over my toy, and I walked away in victory.  I never did like the keep away game.

Two years later, in a seventh grade history class, Austin, the kid who sat behind me, decided to be a dick (or a typical 12- to 13-year old) and pull my desk away from me when I sat down.  As expected, I fell down, and everybody in the class laughed at me.  I got up furious.  Austin laughed the hardest, and I’m pretty sure my face turned red in rage and embarrassment.  I picked up the binder from his desk and threw it across the classroom.  Well, Austin’s binder was full of nothing but loose leaf paper, and all the papers went flying every which way.  The history teacher, who saw and heard everything, stood up from his desk and ordered Austin to go outside (after he collected all his paper, of course).  He protested and said, “Why isn’t Lara going outside?  She threw my binder!”  The teacher replied: “You started it.”   I felt vindicated as I watched him sulk outside the classroom.

As I went through middle school and high school, I slowly lost that fight I had in me.  In middle school, I was openly ridiculed and laughed at by my peers.  They would point and laugh at me, and call me all sorts of names, with an emphasis on how ugly they thought I was.  However, my story is certainly not a unique story.  Puberty is a bitch, and anyone who comes out of adolescence unscathed is lucky, lying or the one who did the name-calling.

Routinely hearing how others think you are the ugliest thing they had ever seen, does take a toll on you.  It’s like every time someone decided to put me down to make themselves feel better, they took a piece of my self-esteem, backbone from me.   I learned to keep my head down and to stare at the floor because sometimes making eye contact with them, just fueled the nastiness in their heart.  I internalized these insults, these unwanted names (again, not atypical for young teenage girls).

I am hideous.

My hair is a mess.

Ugh, my teeth are messed up.

During college, I slowly got some of that fight back in me.  Usually, though, these instances were just examples of me being young, stupid and drunk, aka a typical college student, but these moments of backbone were motivated by my desire to stick up for a friend.  Once at a bar, I totally lost it when this random guy was saying obscene, offensive things to my roommate and best friend.  The dude was just being nasty, and he was not taking the hint from my friend that she thought he was nasty.  Me, being young, stupid and drunk, told him off, and our fight quickly got ugly.  After I called him out for being a nasty creep, he of course had to call me a bitch and then an ugly bitch (because the worst insult a woman can be called is ugly – yawn – or a bitch).   This guy and I had to be separated after I got in his face.

A year or so later, I tried to stick up for this friend of a friend who was being dense and not noticing or caring that he was invading another guy’s space.  I said, “Hey, it’s cool,” to the guy who was losing his temper and threatening the dense friend of a friend.  This guy growled at me, “Bitch, shut the fuck up.  If you say another word, I will beat the shit out of you.”  I believed his threat and became paralyzed in fear.   The guy who threatened me was escorted out of the bar after my friend got me to tell her why I was shaking in fear, and she told the bouncer.

As I got older, once again, I lost that fight, my backbone just fading away.  I never stuck up for myself against certain individuals, who would treat me like a doormat.  Now and then, I would argue or walk away instead of letting someone boss me around or treat me poorly.  I didn’t fight.

I compromised.  I played nice, even when I was mad or insulted, and bit my tongue, even when someone said something unkind.  But if you keep doing that, as I learned, you let others think it’s okay to talk or act a certain way around you.  By playing nice, these negative people learned it was okay to treat me with little to no respect.  I mean, why not?  It’s not like I would ever say anything.

Then breast cancer happened.

After five surgeries, seven weeks of radiation, four months of chemotherapy, one anaphylactic reaction (and a partridge in a pear tree), I became a shell of myself.  After I emerged from the wreckage that is cancer treatment, I had to rebuild myself.  My priorities and perspectives changed, and much to my surprise, my fight came back.   I guess, when you deal with insurance company bullshit, plus all the stress that comes with managing your treatment, appointments, job (if applicable) and personal relationships, you have to have some backbone.   My fight definitely came through whenever I had to make repeated calls to Aetna and fight them over their most recent bullshit claim denial.   My backbone reappeared when I let friendships that should have died years ago just fall by the wayside.

In recent months, I have stuck up for myself in ways I had never done in my adolescence or early adulthood.   When I felt hurt and offended by a loved one, I told that person that they hurt me and why they hurt me.  Although I received a negative response, I felt better because I expressed myself and my feelings are valid, even if they make someone mad.   When someone confronted me for what I wrote (and to be fair, what I wrote was passive aggressive and uncalled for), I stood up for myself and didn’t back down from what turned out to be a nasty fight.

Don’t get me wrong – I’m not going turn into some Bravo Reality Tv Housewife and start flipping tables and screaming obscenities.  I’m certainly not going to be physically fighting anyone (yikes!) or creating Youtube videos telling my “haters” to suck it.   (Waaat.)   It means having professional goals and aspirations and fighting for them.  It means I’m not going to care about how many friends I have – just about the quality.   It means I want to have authentic relationships with my loved ones, which means expressing my feelings instead of swallowing them.

It means I’m going to stand up for myself, no matter what – because I’m worth fighting for.  Since I’ve already ran two half marathons and additional long races, I know I have some fight in me.

Diem Brown

The recent death of Diem Brown, and the headlines regarding her death from cancer made me really think about the over-usage of the battle and fighter metaphors when we discuss someone’s death from cancer.   If you do a google news search for Diem’s name, then pretty much all the headlines talk about her losing her fight or battle.

Anyone who even just casually followed Diem’s story knew that she had a positive attitude and a strong will to live.  She dealt with cancer since the age of 23 until her death at 32, and she became an advocate for those with cancer.  She blogged about her experiences, and she created the website MedGift.   I don’t want to focus solely on the death of Diem, especially in light of the fact that she used the warrior and fighter language, and one could assume that she would approve of the headlines about her death.

However, if you look up news stories regarding the death of high-profile figures who died of cancer, you will come across this language: Elizabeth Edwards, Adam Yauch, Roger Ebert, to name a few.  I also hope I don’t come off as critical of anyone who draws strength from using the fighting and warrior language to describe what they are going through.  Everyone is entitled to use whatever language they want to describe their own experiences, and I really don’t want to come off as the Word Police.  My point of contention is the use of this language when someone dies of cancer.

When we use the language that someone “lost a long battle/fight” with cancer, it suggests that someone in remission from cancer must have done something more than the one who died.  Someone who dies of cancer did not lose or give up or somehow lost any will to keep on living.

Michael Wosnick wrote about the battle metaphor:

It’s not the battle part that bothers me – it is the losing part. For those who ultimately die from a cancer, the idea that they have lost a battle implies to me that if they had just done something else differently then maybe they might have won [emphasis mine]. The use of the word, “lose” is like a zero-sum game to me: if someone or something loses then that means that someone or something else wins. You can’t have a loser if you don’t have winner. We should not so easily give cancer that kind of power over us.

A November 3, 2014 Independent item discussed the use of the battle metaphor in respect to those at the end of life.   The article discussed the findings of a study conducted by Elena Semino, a professor of linguistics and verbal art, who “analyzed 1.5 million words of discussion, representing the views of around 200 people closely involved with cancer care.”

Professor Semino remarked, “The battle metaphor applied at the end of life clearly can have harmful consequences for some people who end up feeling responsible for the fact that their illness cannot be treated.”  She also commented: “The metaphor somehow needs to account for the fact that you can live well with cancer.  There has to be another way to talk about someone who has died of cancer.”

Heather Cleland wrote in an August 16, 2011 piece in Walrus Magazine:

The language around cancer — of “battles” fought, won, lost, and succumbed to — fails to consider the sheer chance of it all [emphasis mine]. Sure there are cancers that we bring upon ourselves, but most are a result of the tiniest bits of bodies going rogue for reasons we’ve yet to understand. To speak of lost battles as though the warrior didn’t want victory badly enough projects our proclivity to control outcomes onto something that cannot be controlled. It’s futile, and it does a great disservice to people like Jack and Rachel who “fought” as hard as I did.

I don’t view the fact that I’m currently NED for breast cancer as a reflection of anything I did.   I cringe, and typically correct, when someone remarks about how I “beat” cancer.  I haven’t beat cancer, won or kicked its ass.  Until I die of something else, we don’t know if cancer is done with me.  I am in remission from cancer, or I’m NED.  I feel incredibly uncomfortable at any phrasing or hyperbole about what happened to me that paints me in some warrior, extreme fighter.  I was often tired, sad and scared, all of which are normal and to be expected.  I didn’t fight harder than someone else with the same diagnosis as me and who went on to have a recurrence.

Cancer is a complex, intelligent and dangerous disease, and we have given way too much credit to someone’s mindset for a positive outcome.  If a fighting spirit and positive attitude cured cancer, I’m pretty sure that Diem Brown would be alive and healthy.  Everyone also could probably name five people they’ve known who died of cancer who had a positive and fighting spirit, too.  Cancer does not care about that.

When I read the obituary for my #bcsm friend, Barb, who died of metastatic breast cancer, the last sentence made me smile, despite feeling very sad about her death:

Barb did not lose her battle with cancer; she lived graciously and courageously with it until the very end.

1 in 8

During this year’s Pinktober, did you happen to come across the “1 in 8 women will develop breast cancer in their lifetime” statistic?  Here are three screen caps with this statistic:

1in8-breastcancer.org

Now from the American Cancer Society’s website:

1in8-cancer.org

A Komen affiliate website:

 1in8

I actually learned recently that this 1 in 8 statistic is actually a teensy bit misleading.   Lifetime risk isn’t the same of your actual risk based on your age.  You know what blows my mind?  I found actual scientific information explaining this statistic on Susan G. Komen’s website (I know, knock me over with a feather):

Women in the U.S. have a “1 in 8” (or about 12 percent) lifetime risk of getting breast cancer [4-5]. This means that for every eight women in the U.S. who live to be age 85, one will be diagnosed with breast cancer during her lifetime.

Absolute Risk Komen

Source: Komen

So next time you come across the “1 in 8 women will develop breast cancer in her lifetime,” keep in mind the second part of that statement: “who live to the age of 85.”

I don’t know why charities and organizations use that statistic so much and with little explanation.  Maybe they want to scare people into thinking breast cancer is going to happen to everyone or maybe they don’t really understand the lifetime risk vs. absolute risk?

My friend AnneMarie, over at Chemobrainfog, wrote:

One in eight is a good springboard for a fundraising campaign.  It makes for a great way to terrorize those who do not understand that the number applies across your entire lifetime and it increases with age.  As you are seated around your table with eight family members of different generations or eight close friends, don’t try to figure out who, unless you also incorporate WHEN into the equation.

There are certain factors that increase your risk of developing breast cancer, and I fell in several of those categories: family history, dense breast tissue, certain benign (not cancer) breast problems and not having children (and related to that, not breastfeeding).  No doubt that these factors definitely increased my risk more than the 0.4 percent figure stated above.    Plus, now that I’ve had breast cancer, I’m also at an increased risk for developing breast cancer again.  Since treatment ended, I have made changes to my lifestyle, such as running and not drinking alcohol, among others, to minimize my risk because I never ever want to go through that again.

Cancer can often feel like a numbers game, although many doctors and specialists in the field will emphasize that you are an individual, not a stat.  When you fall on the bad side of these statistics, these numbers almost seem cruel.  I had less than one percent chance of going into anaphylaxis during chemo, yet that happened to me.  Cancer is definitely not something I ever wanted to be unique at.

I truly believe it’s important for us to know our risks and what we can do to minimize our risks for developing breast cancer.   First, we need to fight through the Pink Ribbon rhetoric seemingly designed to scare the general public with statistics without little or no context.

Guest Post from “Hazel Flatchest”

Here is a guest post from a woman who reached out to me.  Obviously her name is not Hazel Flatchest, but she wanted to remain anonymous. 

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Breast cancer, you say?  Well, it is October…. That month when you walk into the grocery store and it looks like someone vomited Pepto Bismol all over the aisles.  So of course we want to talk all about breast cancer and awareness (gag!) and mammograms this month. Screw that.  Cancer is soooooo 2010.  Let’s talk about NOW.

The mastectomy scars have healed.  The port was removed.  The hair has grown back.  Everything should be back to normal, right? WRONG. WRONG. WRONG.  I don’t even know what “normal” is anymore.

But for the sake of argument, here’s my new “normal”:  I haven’t held down a full-time job for more than 3 months in over 4 years.  I cry several times a day.  Not out of sadness or depression (although I’ve experienced my fair share of both of those in the past four years…), but mostly out of sheer frustration.  I often feel as if I have lost my mind.  It is shrouded in a haze of chemo fog that has affected my ability to solve even the simplest of math problems or puzzles.  I can no longer multi-task without feeling stress and fear rise up from the pit of my stomach.  I am, quite simply, a hot mess.  And the worst part?  Having to accept that this is now my new “normal”.

A recent article on NBC News regales that “Women who get chemotherapy for breast cancer may end up unemployed for a very long time.”  I am living proof that this sentence is true.  And discussions with friends who also went through chemotherapy for this asshole disease only seem to uphold this statement.  Even friends who were employed throughout treatment and still hold those same jobs whisper of negative performance reviews and fears of losing their jobs.  So what the hell?  Seriously.  WHAT. THE. HELL?

Here are some observations of my own situation since I did 16 rounds of conventional chemotherapy and 2 years of Herceptin for my stage 2, asshole Her2 positive breast cancer:

1)    I get frustrated (and cry) easily.  It really doesn’t take much.  Just hand me a pile of things to do.  I used to be a consummate multi-tasker.  Now I just look at the pile and can’t figure out how to prioritize it into a reasonable workflow. So what do I do?  Well, sometimes I just cry.

2)    I am crippled by difficult problem-solving.  I recently took an aptitude test that included a “spatial reasoning” section – lots of puzzles and shapes where you figure out what comes next in a series of shapes and symbols.  After much consternation and nail-biting, I had to call a spade a spade and realize I was freaking myself out instead of arriving at the answers.  I actually could not finish that portion of the test.  I was just too stressed out to do it.

3)    I am extremely forgetful.  I have learned to write things down if they are important and need to be remembered.  This has been particularly hard for me to accept because B.C. (before cancer), I had a mind like a steel trap.  Now my mind seems to be riddled with giant holes that allow information to escape at record speed.

4)    I am socially inept.  This is an area of life that represents a true paradigm shift in my behavior.  Before cancer, I was a social butterfly and easily made friends.  Now I am unsure of myself and hesitant to start conversations with new people for fear I will appear stupid or desperate.

And that is just a short list of things I can come up with off the top of my chemo-addled head.  I am Jack’s chemically altered brain.  I am constantly frustrated, ashamed and humiliated by these changes in myself.  And horrified that they are getting in the way of me getting a job and putting back together some semblance of “normalcy” in my life.  Is this cancer’s dirty little secret?  Does anyone else feel the way I do?  Bueller?  Bueller?

Second Half Marathon

Today I completed my second half marathon, and I’m very happy to report that I beat my previous time by a lot.   My goal was to achieve a time of 2 hours and 10 minutes.  I crossed the finish line at 2 hours and 13 minutes.  Hot dog!   I guess not running with extreme IT band and foot pain really makes a difference.

Unfortunately, I wasn’t 100 percent injury free going into this race.  For the past two months, I have been working hard on renovations in my house with an emphasis on scraping glue and wallpaper off walls and ceilings.  Hours upon hours of moving my arm up and down or above my head, all sorts of repetitive motions.  Right now, I am nursing some pain and numbness in my right shoulder, and sometimes during a run, my shoulder will pop.  Dr. Google suggests that I might have some tendonitis in my right shoulder, but I will be seeing an actual doctor to try and figure out what exactly is going on.

I arrived at the race early, and I really didn’t need to, unfortunately.  Because I got there so early (well, on time), I ended up waiting around two hours before the race began.  It was cold and misting, and I shivered quite a bit.  I seriously need to remember to do the trash bag before races in the fall and winter.  This isn’t the first time I have came to a race under dressed.  One of these days, I will learn my lesson.  One day.

Around mile 5, my shoulder felt tight and popped – just once, thank goodness.  The bigger issue that came up was the giant blister on my left foot.  I blocked out the pain by totally people watching the other runners.  “What the hell is she wearing?”  “The runners who carry the American flag are bad ass.”  “That woman has a shirt saying ‘Run like a grandma.’  I can’t let her pass me…. crap, too late.  Go grandma.”

Before my half marathon, I contacted Metavivor to see if I can fundraise on the organization’s behalf.   They said yes, and I was able to raise around $700 for Metavivor!   I wish I could have raised more, but this won’t be the last time I’ll raise additional funds for them.   I want to raise more for them than I ever did for the evil Susan G. Komen Foundation.  I’ll right my wrong!

As of right now, I’m sore, hurt but feeling very proud.  I achieved a goal, and an amazing organization received money that will go to metastatic breast cancer research.  I feel actually more pride in that fact than hitting a PR.  I didn’t just write a blog saying: “Pinkwashing is bad, and money should go research.”  I’ve written many blogs saying just that, but this time I helped to raise money for just that.  All the people who donated to Metavivor hopefully learned more about the organization and might feel inclined to donate to them again without any provocation from me.

I run to help reduce my risk of a recurrence.  I run to quiet my demons that like to tag-a-long with me.  I run to keep myself in the best shape I can.  I run to get those endorphins released into my body.  I run to be something I never was before the age of 32: an athlete.  I run to hang out with all the awesome and wonderful friends I have made.

I run because I’m not out to prove anything to anybody but myself, and it’s freaking fantastic.

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.”

Trust_No_One_tagline

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

Robin Williams

Out of all celebrity deaths, Robin Williams’ suicide seems to be hitting me the hardest.  When I was a little kid, I was obsessed with “Aladdin.”  I played that cassette repeatedly while I was in my family’s basement, trying to keep to myself.  Despite the inability to carry a tune, I knew every word and inflection of this soundtrack by heart.   I especially loved the song “Friend Like Me,” and as a weirdo kid, it felt like the genie/Robin Williams was my friend.

If a Robin Williams movie came out, I always made an effort to watch it, even if he wasn’t starring in the movie.  Even if role was small, like in “Nine Months,” he made it larger than life.  I watched “Mork & Mindy” when it was on Nick at Night.  I loved “Hook,” “Jumanji,” “Good Will Hunting,” and of course, “Mrs. Doubtfire.”

He made me laugh.  If it was in the movies or in a television interview that he overtook with his manic wit, Robin Williams made me laugh and feel better.

During my first ever trip to New York City, I spent an entire day just walking around and taking pictures.  I walked from the Upper West Side to the entrance of Central Park.  I stopped to watch a group of performers, and out of the corner of my eye – I saw Robin Williams.  He was walking quickly through the crowd, and he dashed across the street.  I wanted to say something to him but I was so starstruck.  I just saw my childhood hero!  Since I couldn’t say anything, I took a picture instead.

Robin Williams in New York 2008.

Robin Williams in New York 2008.

When I heard about his death, I immediately felt sad, but when I read that it was an apparent suicide after he had been struggling with depression, I felt devastated.

Depression hit me after cancer treatment, which caught me by surprise.  I had never experienced depression before.  For a long time, I kept thinking I could will myself out of the despair I felt.  I couldn’t understand why I felt the way I did after treatment, like I just went through hell, so why couldn’t I escape it?

My life felt hopeless, and I believed I was resigned to a life of illness and pain, that all I was Cancer Girl, and this was how I was going to die.  I was my mother’s daughter, after all.  For awhile, I was obsessed with the thought of my cancer coming back either locally or distant (i.e., stage 4).  I was living in the “what ifs” and “what just happened,” and the present was just bleak.  My relationships suffered.  Even my beloved pooch couldn’t grab me out of the complete despair I felt, though bless her heart, she tried.

After the horrible thoughts that the world would be better without me consumed me daily, in late 2012, I reached out for help.  It took me way too long to realize that asking for help wasn’t a sign of weakness.  It was an act of someone who recognized that her will wasn’t enough.  I continually seek help for depression, and sometimes I am ashamed to admit that.  There’s a stigma to mental illness.  I’ve been managing my depression with therapy and running.  It’s not just a phase or something I can just snap out of.  It’s not a weakness in my character – it’s a weakness in my brain chemistry.  And it’s okay that I see someone to help me cope with depression.

Robin Williams’ suicide just hit me right smack dab in the feels.  I’ve already come across the blog posts saying that he was a coward or selfish, and it just breaks my heart.  He was a sick man who struggled with addiction and depression his whole life.  Nobody will know his frame of mind when he committed this act, but I’m pretty sure we can all agree he must have been sinking in a despair that nobody could understand or withstand.  When someone dies of cancer, we call them brave.  When someone dies as the result of mental illness, they are called weak or cowardly.

If you have never struggled with mental illness in any of its forms, I envy you.  Let me just say – don’t be fooled into thinking that since you’re mentally “sound,” you’re an expert on mental health.  You’re not.

You’re lucky.

Does abortion cause breast cancer?

A friend recently posted on her Facebook profile that she saw the bumper sticker, “Abortion causes breast cancer,” and wanted to know if there was any truth in that statement. I, of course, chimed in that no, that statement is not true. Then I wondered, “Who the hell puts a bumper sticker like that on their car?” I put on my investigating hat, and I found this Zazzle store where you can buy as many “abortion causes breast cancer” stickers as you want.

You know where else you can buy this bumper sticker? Well, the Abortion Breast Cancer Coalition also sells them.  Yep, there’s actually a coalition devoted to selling the myth that abortion causes cancer. Here is an example of some of their “facts”: “A first trimester miscarriage is quite a different situation from induced abortion of a normal pregnancy in its effect on the woman’s breasts. The longer a woman is pregnant before an induced abortion, the higher her risk of breast cancer. This is because high estrogen levels of the 1st and 2nd trimesters cause breast growth of type 1 & 2 lobules. When her pregnancy is terminated before the breast cells reach full maturity, she is left with more immature type 1 & 2 breast lobules than before her pregnancy started, and therefore is at increased risk. Her breasts never mature to type 3 & 4 lobules, which would have occurred in the 3rd trimester and would have lowered her risk.”

Uh, say what?

You’ll notice a couple of items missing from ABC’s link, such as hyperlinks to studies or just generally, facts and science. If you click on something purporting to be scientific and it doesn’t list a single source, run, not walk, away from that website.

I also really want to know why these folks elected breast cancer as the disease you supposedly get from having an abortion. Why not ovarian or uterine cancer – the lady parts involved in getting pregnant? Why breast? Is it because in the last 20 years, all the pink-washing campaigns have made this particular cancer the tour de force of cancers, and they want to hitch this theory on the cancer with the most household recognition?

From the ABC coalition website: “One of the difficulties with anti-cancer organizations is that radical feminists took up the breast cancer cause in the 1980’s. They saw this as a means of championing women’s rights, so it must have come as a surprise to them when they learned that their dominant concern — abortion — caused breast cancer. Once it became apparent that they had a conflict between abortion ideology and protecting women’s health, abortion won hands down!”

Ah, feminism is to blame for breast cancer. Gotcha.

I wonder if those who believe abortion causes breast cancer enough to put a bumper sticker on their vehicle actually know that breast cancer isn’t just one disease either? I want to ask them, “Abortion causes what type of breast cancer?” Invasive ductal carcinoma? Invasive lobular carcinoma? Metaplastic breast cancer? Inflammatory breast cancer? Estrogen-positive, Her2-positive or triple-negative cancer?”   I guess there isn’t enough room on a bumper sticker for things like facts and science, huh?

I understand that pro-life people are quite fond of their provocative bumper stickers and in-your-face posters (although, to be fair, pro-choice folks are also fans of the bumper stickers and posters). This particular bumper sticker is just so inaccurate and offensive that I’m really shocked that anyone would put this on their car.  Women are the ones who have elective abortions, and women (mostly) get breast cancer, so therefore, abortion causes breast cancer? Come on, let’s be better than this – correlation does not equal causation.  I mean, men have vasectomies. Men develop testicular cancer. Does that mean vasectomies cause testicular cancer? (No.)

Let’s go back to the question at hand: does abortion cause breast cancer? Does this bumper sticker mean all abortions, including spontaneous abortions (aka miscarriages) or stillborn births? When I was 28, I had a miscarriage/spontaneous abortion. Two years later, I was diagnosed with early stage breast cancer. Which means, according to the “abortion causes breast cancer” line of thinking, my miscarriage caused me to have breast cancer?

Nope. No. Just no.

I would wager a bet that every single person who slapped that “abortion causes breast cancer” bumper sticker on their vehicle wanted to shame any woman who had an elective abortion (not a spontaneous abortion/miscarriage). If they had an abortion, “Well, you’re going to get breast cancer and probably die,” and if they had an abortion and later developed breast cancer, “Well, that’s what you get for being a slut.”  If that’s the case, though, there is just so much wrong with believing that women who have had elective abortions get breast cancer as punishment, especially when the fact-based science (rather than the pseudoscience of seeking out data to prove one’s ideological beliefs) dismisses any link between the two.

According to the National Cancer Institute’s website, “the Committee on Gynecologic Practice of the American College of Obstetricians and Gynecologists concluded that ‘more rigorous recent studies demonstrate no causal relationship between induced abortion and a subsequent increase in breast cancer risk.’”

The website also gives the following as other findings from the recent studies:

  • Women who have had an induced abortion have the same risk of breast cancer as other women.
  • Women who have had a spontaneous abortion (miscarriage) have the same risk of breast cancer as other women [emphasis mine].
  • Cancers other than breast cancer also appear to be unrelated to a history of induced or spontaneous abortion.

Here is another study: “Induced and spontaneous abortion and incidence of breast cancer among young women: a prospective cohort study.” The conclusion of the study, which included women ages 29 to 46 years old: “Among this predominantly premenopausal population, neither induced nor spontaneous abortion was associated with the incidence of breast cancer.”

Oh look, another study (from June 2008): “Incomplete pregnancy is not associated with breast cancer risk: the California Teachers Study.” The authors provide some background on the study: “Early studies of incomplete pregnancy and development of breast cancer suggested that induced abortion might increase risk. Several large prospective studies, which eliminate recall bias [i.e., a ‘systematic error caused by differences in the accuracy or completeness of the recollections retrieved by study participants regarding events or experiences from the past’], did not detect associations, but this relationship continues to be debated.” The study concluded that “These results provide strong evidence that there is no relationship between incomplete pregnancy and breast cancer risk.”

You know what can increase your risk of developing breast cancer? Per Breastcancer.org, not having children can increase your risk (not cause – big difference): “Women who haven’t had a full-term pregnancy or have their first child after age 30 have a higher risk of breast cancer compared to women who gave birth before age 30.”  That does not mean having an abortion (spontaneous or elective) causes breast cancer.

Breast cancer doesn’t discriminate and it certainly doesn’t care if you have had a spontaneous or elective abortion. Breast cancer doesn’t just happen to “bad people,” because I certainly know a lot of wonderful, loving women who have had cancer and many among those who have died from it.  Your morals don’t shield you from ever having breast cancer.

Using breast cancer, a very deadly disease that approximately 40,000 people will die from in 2014, in the pro-life vs. pro-choice debate is disgusting and offensive. Women (mostly) are losing their lives, and you want to add shame (based in bias and anti-science) to their struggles? Shame on every single person who has put that bumper sticker on their car. You are not a virtuous person. You are horrible.  Women undergoing breast cancer treatment need your support, not your vitriol and blame.