October 13, 2013

Pinktober: The Rant

I have built up a good head of steam on this a few times now, then talked myself down.  But I was also impressed with people wanting a rant and more about October madness, so here goes nothing.

October!  My god, what a lovely month!  Especially this year, so far.  Still sunny and warm-ish days, leaves turning, apples, pumpkins, squash, bonfires, sweatshirts/sweaters, Oktoberfests, Halloween, Packers every week... Got to be one of the best times of the year.  Full of so many colors!  Still plenty of green, and then come the yellows, oranges, reds, browns...

And then there's pink.  Now I need to start with a few disclaimers.  I am not down on anyone having pink as a favorite color.  I live in a house where someone decided that her favorite color had to change from red to pink when she turned 4.  (She's very committed to it, but she has also committed to her favorite color becoming purple when she turns 5.)  I even own one pink shirt and one pink skirt.  There, I said it.

Another disclaimer, and this is important: I do not begrudge ANYONE from supporting breast cancer fundraisers when they want to.  There are some that are very touching and very effective.  It is great to support the cause.  I will not think less of you if you wear pink or buy something with a pink ribbon on it or what have you--I will not think you are being duped or are being offensive to me.  I do NOT want to make you feel defensive of your choices.  It's okay!  And I like that you want to do something about it.

So what's my beef?  I'm going to start with the concept of awareness.

Breast cancer is not good, and it happens.  Believe me, I'M AWARE.  There are a lot of interesting concepts wrapped up in that word...

For me, awareness began as a child.  When I was still pretty young, I knew that my grandma was sick from cancer and treatment, then it came back and she died from really both breast and ovarian cancer.  It has affected 3 aunts on one side, 2 aunts on the other, my other grandma, my mom, and me.  In addition to the death of my grandma, I have lost my mom and 2 aunts from it.  Now parts of my family have the next generation of genetic risk to deal with.

The weirder concept to me was that there are families that really don't have cancer saturating them.  Seriously some families without really any.  So for me that is foreign territory, coming from a place where somewhere in my brain it was not a matter of if, but when.  That's not fatalistic in my brain, either--that's the reality (especially when the genetic risks became clearer).  If I was going to get a disease, I expected it to be cancer.

That's me, but I would challenge you all to try to think of any person you know that isn't aware of breast cancer.  I would take it a step further and ask if you don't think that most people know that early detection is better than late and that appropriate screening is good.  But for a lot of awareness campaigns, this is where it stops.  That is something, but for me that is not good enough.  Breast cancer exists--check!  Sometimes you can detect it at a stage when it can be treated very effectively and survival rates are good, and that's great--check!

Okay, but what causes it?  Really, what?  Why has the lifetime risk of developing breast cancer for women increased over the past few decades and not decreased?  Why do 20-30% of people diagnosed in early stages still go on to develop metastatic cancer?  Why does the number of deaths from metastatic cancer stay the same (roughly 40,000 in the US) each year?  Pink ribbon culture and awareness have exploded!, and yet here we are.

Broaden it out.  Other cancers.  Again, why is there not the targeted, splashy campaign for every cancer?  Broaden it out again and substitute any other disease or chronic illness--MS, autism, mental illness, etc.  They'd love to have the level of awareness and PR of the pink machine, too.  But then what?  We're still here without a cure or prevention for the popular one, so good luck with that... (Sorry, my cynicism is building as I go.)

Okay, yes, there have been advances.  Absolutely.  And for some breast cancer patients, they have made a huge difference.  And for some previvors with the known genetic risk, it has meant having the information to take actions to hopefully drastically reduce of actually getting cancer now that there are tests that can give that genetic information.  (Psst!  By the by, the push to keep breast cancer and other genes from getting patented by bringing the case to the Supreme Court this year was NOT funded and supported by the major cancer organizations.  They were surprisingly quiet.)

I think you get the picture.  Let me switch gears a little then and talk about the part where October becomes offensive.  Yes, offensive.

(What am I supposed to do to save pink owls?!)

And then there's...

At least some of the upper ones donated money to something.  But how is going without a bra going to help fight breast cancer?  How does it raise money to fight cancer--by charging for every leer?  How does it raise awareness?  Believe me, everyone is aware that boobs exist.  (And by the way, there was already a no bra day that had nothing to do with Oct or breast cancer.  AND DON'T CHOOSE THE ONE AND ONLY METASTATIC BREAST CANCER DAY FOR YOUR STUPID CAMPAIGN!)  

How do you think these make me feel?  I fought my best, but I didn't save my breasts in the process.  Fail?  Because that's what's implied.  That those were the parts I should have fought the hardest to save.  That in not saving my breasts, I didn't save what gave me beauty and worth.  Want to know what my risk developing another breast cancer would have been had I kept my breasts?  Still ridiculous.  But would that have been a better success story for a while (until recurrence, because- fail!) because I kept my parts?  Am I less of a success story because of my choices to remove my breasts and not make fake ones to keep up the image?  

And really, you think there isn't a day that goes by that I wouldn't want my old ones back (minus the potential to kill me)?  I don't need to see nipples or talk about tits to remember that I want breast cancer to go away.

Don't get me wrong.  I have a sense of humor, and I know tongue-in-cheek when I see it.  And I really don't take it as hard as I am implying here--REALLY.  I'm just emphasizing the point.  But believe me, there are women that take it that hard.  I see messages and posts from women, I see them stating the harsh words that have come back to them because of their choices, I see the rejection they have faced.  Not cool.

Yes, the slogans are catchy.  Maybe there's some value to shock value.  But it would be just as easy to make it about fighting to save the people, their worth, their beauty regardless of what the disease takes from them.  It would be just as easy to include more people that don't fit the mold of the perky survivor that had just a splash of the chemo, wore some crazy hats and wigs, and got a boob job out of it!  And maybe a tummy tuck with reconstruction!  And then finish a triathlon!  Awesome!  You go, girl!

Along with the slogans and campaigns, however, there is still the message that good survivors don't complain.  That good survivors have boobs as close to normal as possible and don't look sick.  That good survivors don't deal with lifelong chronic illness and side effects because of the treatment.  That good survivors aren't dying.  

So anyway, pay attention to how the message comes across, too.

Listen, pink if you want to pink.  Make it worthwhile and feel good about it.  But be informed.  Be aware when there are conflicts of interest (like pink ribbon alcohol and fried chicken! or guns!).  Be aware when there are vague claims of "supporting breast cancer" without specifics, when there are caps on how much campaigns will donate.  Know your organizations.  Here's a nice link that just popped up today of some good ones:


And the link of the blog page I already shared with some of you of a woman more articulate than I:


I love you, and I want you in the fight.  Thank you for standing beside me.