Komen is OK, but not for the Cure.

There's been a lot of chatter in blogs lately about Komen, pink branding, and, most damning, that very little of the KOMEN money...all those races and walks and bracelets and ribbons...actually goes toward researching a cure for cancer.  There's also talk that Komen is in bed with big pharma, which admittedly, has its own set of issues.  I deny none of this.  In fact, while I will be running in the local Race for the Cure this fall, I won't be putting together a team, nor will I be asking for donations.

So, you might be asking, why the heck is she even telling us all of this.  She sounds rather wishy-washy.  If she's against Komen, why is she even participating?

I want to clarify:  I am NOT against Komen as an organization at all.  I'm against the duplicitous nature of the "for a CURE" mumbo jumbo.  If an organization raises millions of dollars "for a cure," I expect that, quite frankly, a lot of their money should go toward a cure.  Instead, approximately 25% goes toward research.  When it comes to research dollars, only about 3% go toward research on metastatic breast cancer which is what actually kills the absolute vast majority of people diagnosed with breast cancer.  Komen's mission is to end breast cancer.  Yet, almost as much Komen money is spent on fund raising, office expenses, etc. as goes toward research.

But I'm letting all that roll off my back right now, because one thing Komen does, and does superbly, is support those with breast cancer, and for that, I'll run.  I have directly benefited by Komen funding in one way, especially, that might potentially prevent me from having an reccurence.  One way that has been life changing.

Exercise.

A year ago, I attended, a yoga retreat for breast cancer survivors that was funded by Komen and private donations and Duke Cancer Center.  It was an amazing experience, one I shall be forever grateful for.

However, much more life changing was my participation in a Komen grant sponsored exercise program here in town.  C.U.R.E. (A Community United Through Relationships and Exercise) was one of the best experiences of my life (some might think that my life has been boring).  Granted, we were a small community, but what we learned about exercise, alone, made the experience worthwhile. 

I am much, much stronger than I was before beginning the classes.  I also had the opportunity to try different forms of exercise, for instance spin (and I decided that I really do NOT like it) and aqua fit (water aerobics, two thumbs up).  Zumba, which I really did not think I would like, turned out to be one of my most favorite exercise options, and I now attend at least two zumba classes a week, have purchased a zumba game for our xbox kinect!  I'm in the market for the best option for zumba shoes.

I also developed relationships with other bc survivors I may not have otherwise developed.  For instance, one participant was a woman I'd known in passing for several years, yet I didn't know she had had bc and she didn't know I had.  On the surface, we are two vastly different women, but we easily found commonalities in the CURE classes. 

The teachers were very awesome as well.  As trained exercise specialists, and young very fit women themselves, I would have previously been disinclined to chat them up; however, that was so not the case with these CURE instructors.  The one I exercised with the most frequently even went so far as to come up with a specialized exercise routine for me and one other participant as we were a little stronger and more able than some of the others.  Regardless, we all had fun, we all tried out new activities, and best of all, I learned to enjoy sweating to the point that my entire head was wet.  Who knew?

So, for this, and this reason alone, I'm not convinced that Komen is worth totally ditching.  I have certainly benefited from Komen's generosity in funding these programs.

Oh, and now I've "graduated" to the regular classes at the Rec Center and can hold my own with students who are the age of my own children.  Some times, I even show them up :)

Pink Abyss

As we all know, pink is the color of breast cancer.  Pink is a soft color.  A feminine color (in Western culture).  A gentle color.  A warm, welcoming color.  It's a baby color.  Pink represents romance, love, friendship, harmony.  It represents innocence and youth.  Pink is just so PINK.

There's nothing wrong with the color pink.  It's not, though, typically thought of as a "power color."  No law student interviewing for an internship with a judge is going to show up wearing a pink suit, for instance. 

As Marshall McLuhan said, "The medium is the message."  This is seen nowhere more clearly than in the pink-itude of breast cancer.  In previous entries, I've written about the realities of breast cancer, and they really aren't all that warm, welcoming, innocent and harmonious.  Yet the medium of pink (ribbons) has become the message of breast cancer awareness.  It is also becoming controversial as bloggers and organizations take on the pink ribbon campaign.

I've never liked pink.  My mother loved pink.  I think it was her second favorite color next to baby blue.  She was a very pastel oriented person.  Unfortunately for her, her daughter turned out to be very much the tom-boy and very much did not like pink no matter how often I was told I look good in it.

Needless to say, being diagnosed with breast cancer has not helped foster my appreciation for pink.   Early in my treatment, a friend who is also an endurer offered me a golf visor with a pink ribbon on it, saying I could have it if I wanted but that she didn't "need to be reminded of breast cancer.  Fake boobs do that for me."  Very true.  As an endurer myself, the limited range of motion in my left arm is a constant reminder of my cancer.  The cognition deficits I struggle with are a daily reminder.  The damage to my children's psyches reminds me that we are all altered, and not for the better, by cancer.

Yet I find myself inexplicably drawn to pink ribbon paraphernalia.  Oh, I don't mean the cute pink teddy bears or pink ribbon key chains.  I most certainly won't be getting a pink ribbon tattoo.  Daily, though, when one particular group post comes through my Facebook feed, I find myself clicking on items to buy that are decorated with pink ribbons.  Pink ribbon running shoes, fleece jackets, and water bottles draw my attention. 

I never buy them.  I'd be uncomfortable wearing them.  I do, though, understand why others buy them.

At one point when I was in treatment, my infusion cycle matched that of another endurer.  I mentally referred to her as "the pink ribbon lady."  I've since run into her at other breast cancer oriented events.  We chatted as we sat, tethered to our poisons, for long periods of time.  From what I can infer, she's a mother of grown children, a grandmother, and also has metastatic her2/neu breast cancer.  She was there getting the herceptin infusions that are keeping her cancer from progressing.  As much as I could tell, she is "healthy" and living a very active life, which is awesome and gives me hope.

I refer to her as the "pink ribbon lady" because on one particular day every single item of clothing that I could see had at least one pink ribbon on it.  Her hat, her shirt, her sweat pants, her socks, her tennis shoes, her jacket, and her earrings all had (albeit tasteful) pink ribbons somewhere.  She was also talking about having attended a "pink ribbon" event the previous evening and plans for attending another the following week. 

Now, maybe her clothing was part of her infusion armor. I wore my "Hey Cancer, you picked the wrong bitch!" t-shirt on infusion days.  I also wore my Pac Man t-shirts to infusions.  I carried Pac Man band aides to be applied over my port after my infusions. I even mediated to Pac Man music during infusions. I'm all about infusion mojo.

I won't, though, wear pink ribbons.  For starters, they are pink.  I've made it clear I don't like pink.  However, every time I look at some pink ribbon festooned item, I also think "I'd never wear that."  I don't want to be known as the Breast Cancer Lady.  Trust me, I don't hide my diagnosis.  I also wear a lymphedema sleeve quite frequently.  I probably talk too much and in inappropriate situations about cancer and treatment.  On the other hand, I'm creeped out by the idea of wearing breast cancer ribbons on my attire.  During treatment, I had a pink boxing glove key chain that I attached to my bag and a real pair of pink boxing gloves on my power alter, but those are gone now.  I don't feel drawn to them.

Still, I find something attractive by the pink culture.  Although I struggle with the Komen organization and pinkwashing of product marketing, I also can't say I won't participate in the Race for the Cure this year.  I found participating in the Race last year exhilarating.  (I promise here that I won't hit anyone up for donations, though, and I won't be organizing a team again.)  There's something exhilarating about being surrounded by others who have shared experiences, fears, and hopes.  I also don't mind the support funding offered by Komen.  I fully enjoyed my exercise classes for women with breast cancer, funded by a Komen grant.  Best classes ever!  I don't, though, anticipate using the Komen bottle koozie or change purse that I was given. 

There is something about the message of hope and progress and belonging that supersedes the other messages in the pinkness of the ribbon medium.

I look at pictures of my friend and her pink ribbon dragon boating paddle, a friend who is many years out from treatment and doing well, and I think if she can do it, I can do it.  I relied heavily on messages of strength and hope during treatment. 

I'm planning on buying a new kayak next week.  I doubt it will be pink.  If I could find a pink kayak paddle, I'd be all over that.  I'd certainly add a pink ribbon decal to the bow of my kayak.  I'd wear a pink whitewater helmet or life vest.  I'd wear pink ribbon lifting gloves with pride.  I'd probably wear a tech shirt that says, "These boobs don't jiggle. Running for my life" or "Cancer sucks.  Running for my life."  I already have one that says, "Chemo is easy; chemo is hard."  I'd use pink kettlebells.  I'd wear a pink biking jersey.

A pink paddle, I think, sends a much more empowering message than a pink teddy bear.

Pink is here to stay.  The pink ribbons and teddy bears aren't going away.  I just want women to also find strength in pink, to see pink ribbon hand weights and heavy bags, not just yoga mats and water bottles.  Instead of racing for  a cure, racing in spite of no current cure.

Maybe I'll be out on the river some day and some woman whose breasts have been chopped off, who can't raise her arms more than 30 degrees from her side, who that morning had to ask someone to tie her shoes for her and pour her a cup of coffee will see my pink ribbon kayak paddle and draw some strength and determination to keep putting one foot in front of the other. 

Awareness, pt. 2

Maybe I should make this entry pink, pink lettering on a pink background, totally unreadable, just a sea of pink.  Why would I want to put all this effort into writing a blog entry just to have it unreadable?  Why do people keep making breast cancer seem like a happy, fun, feminine, cool, trendy disease?

The facts aren't that happy.  Sure, it's not the death sentence other forms of cancer are.  Let's face it, some cancers are quick, brutal, and rapidly deadly.  For those cancers, the question isn't "if" but "when."  I have a friend who has a specific type of cancer that has a 0% five year survival rate.  ZERO percent.  I don't know what the one year survival rate is, but it's not great.  Another of my friends was told she'd live 12-18 months.  She fought hard. She battled mightily.  She lasted 15 months if I count correctly.  Compared to those types of cancer, sure, breast cancer rocks.

But do all of those people who are so happily pink, festooned with ribbons and feather boas and running and dancing and doing all those fun things for a cure really aware of how great breast cancer is?  How survivable it is?  How much progress has been made?

For starters, when we talk about "surviving" with breast cancer, we speak of surviving five years.  The term is "the five year survival rate."

Pardon me for not being too chipper about that.  I'm coming up on my second cancerversary. 

If a woman happens to be Hispanic, which I am not, she's more likely than other women to get aggressive breast cancers and die from breast cancer.  Were you aware  of that?

I've heard people, endurers as well as the non-effected, say, "At least the tumor is estrogen (or progesterone) receptive.  There's a pill for that."  Yes, indeed there is.  And those tumors tend to grow more slowly.  See how aware we all are?  Yet, not 100% of all those hormone receptive tumors respond to medication.  In fact, for people who are progesterone positive, under 20% respond to hormone therapy.  Oops!  Wasn't aware of that fact.

Many people are also aware that another type of cancer, the type I had, is particularly aggressive.  It's called HER-2+ breast cancer. But joy of joys!  Herceptin cures it!  And if it does come back, "you just do herceptin treatments for the rest of your life."  Well, that's probably correct.  As long as the herceptin continues to work.  Of course, Tykerb is also an option.  But sometimes that doesn't work, either.   And, the woman dies. 

We are also all aware that breast cancer is curable.  And that's true.  To an extent.  Most women don't die from the cancer in their breasts.  They die from the cancer that has spread to other places, their brains, their livers, their lungs, their bones.  If the cancer just stayed in our breasts, we'd be fine.  Cut it out, chop 'em off, radiate 'em.  End of story.  However, that's not how breast cancer works.  There's never, ever a guarantee that even the smallest spot of cancer hasn't sent cells out into the blood stream or lymph system, so many (most) women have cells, lurking, waiting to come to life.  Yippee.

Many of us are aware that there are things we can do to "prevent" breast cancer.  No, not really.  Other than cutting off breast buds at birth, there really isn't anything that "prevents" breast cancer.  There certainly are ways women can reduce their risks, their life time, risks of breast cancer.  These include staying within five pounds of a healthy teenage weight, exercising an hour a day, eating a mostly plant-based diet, breast feeding, having babies earlier rather than later.  These are not "preventative" as we'd like to think.  Breastfeeding is not the same as wearing a condom to prevent pregnancy.  A condom is, what, 99% reliable although users of them tend to be less so?  Breastfeeding your baby for a year, two years,  a total of 13 years spread over several children, does nothing more than reduce one person's life time risk of getting breast cancer.  It's not the same as, say, not smoking to prevent lung cancer.  Being thin, fit, young, and nursing does not mean one doesn't have to still screen and hope for the best.  Many women aren't aware of that.  When I was diagnosed, some ardent breast feeding person who was  touting breastfeeding as "preventative" had the gall to ask me if I had a family history, as if...whatever.  She said she was counting on nursing to "protect" her.  Idiot.  Simple stupidity.  Further proof that the USA sucks at math and mathematical reasoning.

Let's talk about long term survival.  We are aware that a lot of women survive for years.  Women are typically over 60 when they are diagnosed.  Let's face it, when you are in your late 60s or your 70s or older, "long term" takes on a whole different meaning than when you are in your 20s or 30s or 40s. 

And none of this takes into account the negative effects of cancer treatment on a person's general health.  For starters, cancer treatment can lead to new cancers.  We are all aware that radiation can cause cancer.  Cancer treatment often includes radiation.  There's a double-edged sword.   Better yet, there's the chance that treatment will cause heart, liver, or kidney damage.  The Tykerb I take now is black box labeled for liver damage, "sometimes fatal."  Nothing like killing yourself to stay alive.

Herceptin (and Tykerb) can also cause heart damage.  My radiation treatments also got a part of my heart.  Isn't that swell?  Oh, yes, my lung, too, was radiated.  Heart, liver, and lungs!  Oh, my!



There are also lesser, yet also life altering, long term effects, such as a change or decrease in the ability to taste, chronic fatigue, mental fuzziness to the point that some people are unable to continue in their careers, loss of mobility, nerve damage especially in the feet and hands, chronic constipation or the opposite, chronic diarrhea.

I don't think most people are aware of this.  That to "survive" does not mean to "get better" and that life isn't always pink and rosy are not parts of awareness.

Yet, we are aware that there's a "cure" out there.  In fact, when it comes to breast cancer and pink, "awareness" seems to be synonymous with "cure."  However, one would think that if an organization were really, truly concerned about a "cure" their money and focus would go to what...awareness/education? or research?  prevention or parties? I'd like my money to go to research and prevention.  Check out these charts to see where it really goes.

Just so you are aware.