Friday, October 23, 2015

The (Political) Games We Play.

Under construction - seems about right.
If there are two topics that go well together it is politicians and rectums - amiright folks?

But, seriously.

What if I were to tell you bipartisan politicians and the rectums of the elderly are locked in an epic battle on Capitol Hill even as I write this?  While you attempt to scrub that image out of your brain, let me explain.

Once upon a time, there was a little ole' piece of legislation which ensured Americans across the land received access to health care screenings.  Or at least that was the idea.  Once this legislation was decreed (Let's call it Snowshama Pear) cancer screenings such as mammograms and colonoscopies were offered to patients without a co-pay.

You know - because the citizens of the land generally had better outcomes if they were healthy.  And healthy people cost the other citizens less money to take care of in the grand scheme of things.

Anyhoo, thanks to Shoshama Pear and regularly scheduled colonoscopies, many happy colons were eventually liberated of perilous polyps - thus thwarting the evil colorectal cancer.

The End.

Or at least that's how the story was supposed to go.
Don't mind if I do...

Here's the deal.  Regardless of how you feel about - er...Shoshama Pear - insurance companies currently allow patients access to free cancer screenings.  Which frankly - this fair maiden believes is a pretty great idea.

But, as it stands, there is a glitch in the law which discriminates against Medicare patients and needs to be tweaked.

Because of the way the guidelines are written, Medicare patients have access to free screening colonoscopies - like everybody else.  But if a polyp is removed (the whole point of a colonoscopy) it is then billed as a diagnostic procedure - which can come with a steep price tag.

This means if Grandma goes in for a colonoscopy and her doctor finds a polyp - she could wake up with a sore bum - AND a giant (and unexpected) bill.

This disparity in services is particularly concerning because Medicare patients are often on fixed incomes.  They are also the population who are most likely to benefit from the screening in the first place.  As a reminder, colorectal cancer is one of the only types of cancer that can essentially be prevented if polyps are found and removed.

Luckily, once the flaw in the intent of this law was realized, a bill was put into place  - HR1220 - which would end the current discrimination against our elderly population and allow free colonoscopies for Medicare patients.

Because nobody wants Grandma to get colon cancer.

Giving support to this bill seems like no-brainer for any politician.   In fact, when I met with our Idaho politicians in DC last month there was resounding support voiced for this bill.  And yet, the last time I checked, not a single Idaho politician has signed on to support this bill.  Not a single one.

What the poop, Idaho?

I'm going to go out on a limb and say this has something to do with hurt feelings over Shoshama Pear.  And I get it - there are lines to be drawn.  But I don't believe Grandma should suffer because our politicians aren't playing nice in the sand box of our nation's capitol.
Rain Rally with ACS.

There is one way to get your very own personalized form letter our voice heard - and that's to speak up.  Technically these guys work for us - or at least they should be working for us.  But - much like cranky toddlers - if we don't hold our representatives accountable for bad behavior it's only going to continue.

So, lets start a new trend - getting involved.

How to "Be the Change you Wish to See in the World"

1.  Figure out who represents you.  (Here's a link to our Idaho legislators by district but all state legislators are just a google search away).
2.  Send an email or leave a voicemail with this message:
My name is (insert name here) I live in (insert county here).  I am your constituent.  I am contacting  you to request that you cosponsor bill 1220 - Removing Barriers to Colorectal Cancer Screening Act. 
3.  Hang up.
4.  Keep sending messages until you can recite the phone tree by heart.  My motto is - if you can't beat them - you might as well annoy them.
5.  Wait for your personalized form letter from your representative in the mail.

Behind Hope.
Being involved in our political system can sometimes be frustrating - but deciding to be informed and speaking up is pretty easy once you get used to it.  Frankly, the decisions these guys are making will affect us whether or not we are part of the decision making process.  Being involved is also the best way to start your very own political autograph collection.  At the very least it helps to pass the time between elections.

And if you want to change the world - Grandma's colon is a good place to start.

Saturday, October 10, 2015

How to make a difference in three easy steps.

 I'm not a big fan of pink fluff.  And by "not a big fan" I mean - the entire month of Pinktober I carry around my own soap box and mutter a steady stream of pink-centric obscenities ala Yosemite Sam.
Heather Caro just spotted a pink ribbon display at the
grocery store.

I'm sure I'm a real treat to be around.

There are just so many examples of pink ribbon commercialism being used to exploit well-meaning consumers, I find myself on an advocacy warpath for the entire month.

But as exhausting and frustrating as it can be to fight the "system" - giving up is not an option.  Because as pink ribbon merchandise continues to sell like hot cakes and politicians continue to underfund research - people I love are diagnosed and my friends continue to die of this disease.

Pink is not a cure.  And as long as I am able to  work toward real progress against this disease (less caustic treatments, increased research funding, regulation on the use of pink ribbons) I will do so.  Lucky for me - and the many advocacy voices who carry around soap boxes of their own - we are not alone in this.

I am so proud of the many, many people who contact me with ridiculous pink ribbon products, comment on Facebook or speak up when they see the audacious way this disease is being exploited for financial gain. There is no higher compliment I can receive than "I hear your voice each time I see a pink ribbon" - and I hear that a lot.  Thank you for standing beside me in the trenches, for listening and especially for being brave enough to speak up.

We are making a difference in perhaps the only way possible - one person at a time.

So, in honor of my third Pinktober after my breast cancer diagnosis in 2012, I'd like to share an excerpt my Tedx speech - Think Beyond Pink.  Someday I hope these words will no longer be necessary.  But I am grateful for each year I am able to be here to work toward bringing meaningful awareness to this disease - and away from the fluff.


Breast cancer has become the shopping disease because altruism sells and marketing gurus know that.  And while people do have the ability to make a meaningful difference in the lives of others - you won't find it in a bucket of chicken.  In fact, products that provide a false or overinflated sense of contribution may be doing more harm than good.

What I've learned is, there are no regulations on the use of the almighty pink ribbon.  In fact, many pink-ribbon-wielding products contain actual known carcinogens.  And donations provided to cancer causes are often either limited, unstated or capped.  Which means despite the onslaught of Pinktober breast cancer "awareness" campaigns, there is precious little progress being made towards preventing
This pink ribbon placement is oddly appropriate.
or curing breast cancer.

It turns out - awareness - just isn't enough.  Awareness won't even get us out of the driveway on the journey to find a cure.  And if we are to continue to make gains against this disease, it will require a more mindful and intentional approach.

Thanks to the wonders of the internet, each day we have laid out before us a great feast of information.  Every dish imaginable is available at our fingertips 24/7.  But the catch is, there is so much out there and most of us lead such busy lives we only have time to lick the frosting from a single cupcake.

And there is very little substance in frosting.

But making a difference is possible - and it's easier than you'd think.  And because, thankfully, it doesn't take a personal health crisis to bring about real change - I'd like to share with you some of the ways I've learned to practice more mindful philanthropy.

1.  Question Everything

This is a big one.  And if there is one take-home message to glean from my time with you, let it be this:  

Teach yourself to ask questions.

Apparently breast cancer is finger-licking good.
Learn to read the fine print whether purchasing a product or participating in an event.  Ask:  Who profits from this, and how?  Will people benefit directly or with the money raised be funneled into expensive marketing campaigns or administrative wages?

And perhaps most importantly - learn to question yourself.  Before you buy in to a request, analyze your own intentions.  Will posting a "no-makeup selfie" spread knowledge or raise money?  If you find yourself participating out of vanity or social-media induced peer pressure, how - exactly - this that help others?

And if you can't find the answers to those questions, don't be afraid to walk away.  Or keep scrolling.  

If we are to move beyond awareness - for any cause - we need depth, we need buy in, but we don't need more frosting.

2.  Dig Deep

I'd like to say I found my cause, though in reality, it found me.  But perhaps that's the way it should be.  Perhaps connecting deeply with an experience is the only way to discover where you can do the most good - no matter how painful that process may be.

After my diagnosis there were people in our lives who slipped away once the harsh realities of my illness set in.  But there were many others who chose to stand beside me in the trenches.  The bond we share today transcends any I have ever known.

Though surgeries left me marred and forever altered, I chose to fill the scars that laced my chest with color as I began work on a mastectomy tattoo.  The process - on my own terms this time - helped me
Altruism sells - and marketing gurus know that.
to reclaim some of what was taken and transform the grit to grace once again.  Through it all, I documented my journey on a blog that started out as cheap therapy but eventually reached thousands of people from around the world.  By simply sharing my story I was able to inspire mammograms, genetic testing and an honest look into the state of our health care system from both sides of the hospital bed. We each have unique stories and perspectives others may benefit from.  And though I cannot tell you what your message should be, I can tell you it is already within you.

Meaningful philanthropy should be more about who you are as an individual - and not just a bandwagon to jump on. We can make a real and tangible difference in the lives of others if we take the time and effort to be intentional about it.  And though the real issues are not always convenient - or even pretty - they will reach others more deeply than any ribbon or bucket of ice ever could.

So don't be afraid to tell your story.  You never know whom you may reach through the telling.  And it may just set you free.

3.  Be the Change.

The truth is, pink - the color - won't save me or anyone else.  Pink won't help pay my medical bills or limit the use of carcinogens in our environment.  It can't help bring about new, less caustic treatments or provide the efficient cancer detection methods we so desperately need.

Pink can't do that.  But I can.

I can volunteer.  I can tell my story.  I can speak up when I see that from my vantage point - we have jumped the track with our awareness campaigns.  I know that we can do better.  But it's up to all of us to make sure that happens.

At the end of the day, no matter what your cause or which colored ribbons you stand behind,
impactwill only be as powerful as what you put into it.  Real progress can only be made through choosing to partake in more of the "meat and potatoes" of the big issues and less of the frosting.  So as you peruse the ribbon bedecked merchandise this Pinktober and beyond - please - read the fine print, ask questions and choose to be more involved.

With more than 40,000 deaths attributed to breast cancer in the US each year, we can't afford to waste a single penny on more pink coffee mugs.

And for those of you who enjoy wearing pink - by all means - continue doing so.  Each of us must find our own way to survive this disease, and if pink provides a rallying cry or gives strength in any way then it certainly has its place.  But I urge you - please do so responsibly.

As for me - I'm going to sit this one out.  Pink's just not my color.

Thursday, October 8, 2015

Best and Worst Pink Products (and How to Avoid Being Fooled)

My mom is a smart lady who is full-to-the-brim with great advice.  

When I've questioned my ability to raise tiny humans, she taught me to be a good parent all you need is to love your kids and the rest will work out.  On days when I run in circles and nothing seems to work out, Mom reminds me the secret of life is to get plenty of sleep and wear comfortable shoes.  But there are some occasions which call for my Mom's favorite piece of tough-ish love advice:  "Pull your head out of your ass."

This is the particular piece of advice I find myself muttering to the advertising world throughout the entire month of October as they roll out gems such as pink ribbon dog poo bags or pink ribbon cleaning supplies (complete with actual known carcinogens).  So in the spirit of the season - and while channeling my mom - I'd like to bring you a round up of the best and worst pink products I've happened across in the last few years, as well as a few tips to avoid falling prey to less-than-sincere advertisers.


What it is:  Pink NFL Football Gear

Pink Peeves:  Although the NFL has been quick to jump on the bandwagon with everything from pink football uniforms to pink fan gear - a paltry small amount of the proceeds raised actually benefits any cancer cause.  Which means that although the NFL is making money hand-over-fist by aligning with this previously untapped market, the end result is a philanthropy fumble.

What it is: Pink Hair Brushes

Pink Peeves:  Let me just state the obvious - people diagnosed with cancer usually lose their hair to breast cancer treatments.  For many of us (myself included) our hair never returns to "normal".  Putting a pink ribbon on hair care products does not win any points with the chemo crowd - certainly not this member of the club.  At best, pink ribbon hairbrushes come off as a bit out of touch with what the breast cancer cause is all about - and at worst it is a really dick move.

What it is:  KFC Pink Bucket of Chicken

Pink Peeves:  This was a brainchild pairing between Komen and the good Colonel.  Because - why not combine the number one (heart disease) and number two (cancer) killers of women in the US along with 11 secret herbs and spices.  Finger licking good.

Go Home Komen, You're Drunk.
What it is:  Pink Fracking Bit

Pink Peeves:  In 2014, oil and fracking giant Baker Hughes went down in PR nightmare history when they made a sizable donation to Susan G and produced 1,000 pepto bismol pink fracking bits.  Now regardless of your stance on fracking, it's hard to imagine a more controversial pairing than an organization whose mantra is "For the Cure" and a company whose practices "Might be a Cause" of cancer. And yes - this really happened.


So here's the thing - I am well aware not all pink products are created equal.  And though I personally avoid pink like the office flu-bug, I can certainly appreciate the supportive sentiment - as long as there is a little substance behind all that saccharine.  So for those who may want to support the chemo kids but don't want to be duped in the process - here's what to look for (and a few of my favs).

Anatomy of a Pink Product
Not all pink products are created equal.  Learn to
be a label reader to avoid being duped!

What to look for:  Be sure to read the fine print associated with any pink ribbon packaging.  There should be a clear statement of how much money will be donated as well as which organization will benefit.  Also, watch for funding caps - many organizations make a set donation to a cause which will not change regardless of product sales.

What to avoid:  Steer clear of vague statements such as "a portion of proceeds will be donated to a cancer cause" or "supports breast cancer awareness".  If you spy a ribbon package without a donation disclaimer - shelve it and keep walking.

Pass-ably Pink Products

What it is: Anything for sale on the Metavivor website.

Why I like them: If you don't have Metavivor on your radar yet - be sure to do so, pronto.  This crew is shaking things up in the breast cancer community and the big ole' world by changing the face of metastatic breast cancer. Through the use of in-your-face tactics, these brilliant minds are making big waves - like the Met-Up DC Die-In Event scheduled for October 13th. (Here's a link to a Nancy's Point write up about the much anticipated Capitol Hill happening.)  One of Metavivor's primary objectives is to increase the research funding for metastatic breast cancer. This is essential because while nearly 30% of all patients diagnosed with early stage cancer will eventually become metastatic, only 2% of all research funding is spent on metastatic disease.  Metastatic or StageIV breast cancer is fatal, associated with less than a 5 year life expectancy and has no cure.  Proceeds from Metavivor website sales go towards keeping their operations afloat and nearly 100% of funds raised goes toward directly funding metastatic breast cancer research grants.

What it is: Sevenly T-Shirts

Why I like them:  Sevenly is a company whose business model makes the lofty goal of promoting a "culture of giving".  They partner with nonprofit organizations to produce a clothing line with true-to-mission-statement clothing and sell it on their website.  Sevenly then teaches about and promotes the heck out of the featured cause  - and 7% of all sales go right back to their non-profit partners.  Sevenly's designs echo what the organizations stand for - which is probably what I like most about them - and they are clear about what percentage of proceeds go back to the non-profit.  My fav is the line benefitting First Descents - an organization which provides free outdoor adventure trips (think white water kayaking, surfing and snowboarding) for cancer survivors under the age of 40 as a way of helping them reconnect with the world.  But there are plenty of other great designs and organizations so be sure to linger a bit - you might just learn something.

What it is: Bravery Bags

Why I like them:  One of the good things that came from my own cancer diagnosis is that I have met some amazing, inspiring and just plain fun people who are making a difference in this world.  Ann Marie Otis of Stupid Dumb Breast Cancer fame is one of those peeps.  In between raising money for various cancer causes and working as a fierce advocate for the metastatic breast cancer community, this dynamo  (and her children) collect items for what they dub "Bravery Bags".  These she fills with comforts and delivers to her local cancer center to lift the spirits of those undergoing treatment - no small feat.  Anyway, the project is the epitome of kindness and it makes an immediate impact on those undergoing treatment - plus it keeps her kids busy stuffing bags.  So, the next time you are doing some online shopping, be sure to throw a few items in your cart from their Amazon wish list.  I criss-cross my heart it will go to good use - and you will rack up some good karma points in the process.

What it is:  Ford Warriors in Pink

Why I like them:  Ok, full disclosure, I was pretty skeptical of this organization when I first learned
about it.  At first glimpse, it appears to echo any of the multitudes of companies who have scrambled to brand themselves using the pink ribbon popularity contest.  But, after doing a little more digging, I'm pretty impressed.  100% of the net proceeds from the organization sales are donated to one of four cancer organizations - Young Survival Coalition, Dr. Susan Love Research Foundation, The Pink Fund and yes, even Komen Foundation.  But the best part about the site is that when you purchase an item from the site they tell you the exact dollar amount that will be donated - and you can choose which of the organizations will receive your money at checkout.  Pretty cool.

Sunday, October 4, 2015

Real advice from a member of the club nobody wants to join.

1. Know your body. Be aware of what "normal" looks like and speak up when you notice any changes. If your doctor doesn't listen to you - speak louder. 

2. Be your own advocate. No doctor will be as invested in your own well being as you should be. The medical world is a complicated place and it is all too easy to fall through the cracks. Don't be afraid to ask questions, to call back and to make requests. And never assume that no news is good news.

3. Remember that cancer does not discriminate. It affects every race and every age - and statistically speaking you will probably hear those dreaded words at some point in your life. Awareness is important but not in the tie-it-all-up-in-a-pretty-pink-bow way that is so often portrayed. Cancer awareness is important because if it could happen to me - it could happen to anyone. 

4. Finally - pink is cute but it's not a cure. Don't get sucked in to marketing geniuses who profit from a disease that has affected far too many of our family and friends. 

We need research - not more ribbons. Please send your money in the right direction.

This is what awareness looks like.