Thursday, December 3, 2015

Optimism: The Road Less Travelled.


Donations can still be made to my CrowdRise account
and are much appreciated!
Here's the link.
For those of you who don't know this, I grew up in a very small town.  In fact, if you listen to John Mellencamp's "Small Town" he was probably singing about the slightly larger neighboring town near the town where I grew up.

Want more proof?  My husband's high school graduating class was larger than the entire population of the town where I grew up and I already had kids of my own when the first stoplight went in.  (The stoplight was pretty big news at the time and whether or not it is necessary still gets brought up in regular conversation.  Spoiler alert - not really.)

Though I never would have admitted it at the time, a childhood spent in Smalltown, USA helped shape the way I see the world - and my place in it.  But nowhere are these roots revealed more clearly than through my navigational skills.  For you see, the world I grew up in was a place where if ever I found myself lost - and drove/walked/rode my horse far enough - I would eventually find what I was looking for.

To be truthful, the misguided belief in my own innate ability to "find my way" is not particularly helpful when navigating cities with more complex roadway systems than what I am accustomed to - which is, you know, everywhere.  But it turns out, believing you will eventually get to where you need to go (even when you aren't certain you started out on the right road) is a pretty great way to get through life.

Light and love with the not-so-littles.
I share this with you now because, given the state of our collective news feeds (HOW is DonaldTrump still a viable presidential candidate at this point??!?) we could probably all use a little inspiration.  And something pretty amazing happened this week that I can't in good conscience keep to myself.

The last month has been a busy one here at Casa de Caro.  I put together a new website, checked a few items off my travel to-do list, and most importantly I began fund raising my face off to be able to volunteer in India with A Fresh Chapter. 

Frankly, this process has not exactly been an easy one for me.  It turns out it is really uncomfortable to ask people for stuff - especially when that stuff is money.  But as I often say - it takes a village to get through something as big as cancer, and survivorship is no different.

Despite my discomfort, all month long I've been amazed by the wonderful people who have contributed to this crazy dream of mine - and especially by the notes sent of encouragement, gratitude and even remembrance of those lost to this disease.  Friends, loved ones and fellow advocates have filled me with enough optimism about the human spirit to sustain me through a thousand Trump presidential campaigns (and that's saying something).

Need a little optimism right about now? 
We have you covered.
Then, on Monday - the last "official" day of my CrowdRise campaign - something happened which caused me to instantly dissolve into a puddle of tears at my desk.  I received an anonymous donation of $3,500 - putting me slightly over the $5,000 I needed to cover the program costs. 

(**Side Note: Although this generous donation was made anonymously, I was notified through CrowdRise who had made it.  Incredibly, not only was it someone I have never met, but when I sat down to write a tearful thank you to the person who had just made my dream come true, their response was simply: "No thanks necessary. Live joyously." If there has ever been a more profound statement of giving, I've not yet heard it.  May we all live with such a mantra.)

This means I've managed to reach my goal - even before our big Fill Your Bowl, Feed Your Soul fund raiser event set for this weekend.  It means that not only is my insanely big, amazing dream attainable - it is happening - and it's all thanks to my incredible, supportive tribe! 

So there you have it folks - humbling, indisputable proof that humans ARE amazing, that there IS goodness to be found in this world and that if you SAY YES to your dreams, the way will open up to you.  The hardest part is being brave enough to say "yes".

****

With this recent turn of events, we've decided to switch fund raising gears a bit on Saturday.  Although I still need to raise money to pay for my plane ticket to India (and those suckers aren't cheap!), all additional proceeds 
These brochures went up all over town -
bald head and all!
received from the event will be donated to two very worthy cancer related causes:

*  Half of the money raised after my travel costs will go back to A Fresh Chapter in order to help someone else affected by cancer create a positive ripple effect in the world. 

* The other half of the proceeds will be donated to Metavivor - an organization which directly funds metastatic cancer research.  As a reminder, around 30% of all early stage breast cancers will eventually return as metastatic disease.  Metastatic breast cancer is fatal and though it is the only type of breast cancer that kills, currently only 3% of research funds are dedicated to metastatic disease.  This organization is working to change that.

The donation to Metavivor will be made in memory of Bonnie Myers, my dear friend Bret's mother, who lost her life to triple negative breast cancer this year.  We love and miss you so.

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So if you are free Saturday, please join us for an inspiring evening of community, light and love.  With any luck we should have enough soup to fill your belly and silent auction items to fill your stockings.  But more importantly, we will have plenty of hope and optimism to renew your soul.  (No matter what your facebook feed throws at you this week.)







Sunday, November 1, 2015

Turning the Page of a Fresh Chapter.

Throughout the long days and nights of cancer treatment I often fantasized about crossing the finish line.  I imagined how victorious I would feel after completing the last of the seemingly endless surgeries, chemotherapy and radiation treatments.   

But to my great surprise, when the end of treatment finally arrived I felt far from from victorious.  And as my friends and loved ones gathered at my favorite restaurant to celebrate - I cried in the bathroom and begged my husband not to make me go. With a ten-year follow up schedule in hand, celebrating the end of cancer seemed both ludicrous and premature - perhaps even an invitation for fate to smite me once again.

I had trained for a 5k then discovered I was running a marathon. And somewhere along the line I realized the elusive finish line at the end of cancer treatment is merely an illusion.  Today, three years after my diagnosis the weighty truth is - this will never end for me.

How "survivor" feels.
There are many side effects associated with the treatments I have endured.  Chronic pain, memory loss, premature menopause, and osteopenia punctuate my H&P's these days.  And as much as I would like to tell you otherwise, I'm not completely out of the woods with this diagnosis.  

Thirty percent of breast cancer patients will go on to develop metastatic disease which is fatal and has no cure.  This means I must stay vigilantly aware of twinges of pain, lingering cough or fatigue which could signal the return of disease - effectively keeping me captive in a body that once betrayed.

But the heaviest burdens come from watching my friends and family struggle with their own cancer diagnosis - knowing I can do nothing to save them from this fate. And the nearly unbearable grief as voice after voice is forever silenced by this disease while seeing my own children's eyes in the family left behind.

There is no "finish line" with cancer.  Anyone who tells you otherwise is either delusional or trying to protect you.  And unlike active treatment - when roads are lined with well wishers - the post treatment course is often traveled alone.

But although I did not choose this road - I can determine my stride and the impact I make along the way. Which always requires stepping out of my own comfort zone. 

This leads me to my latest venture into scaring the heck out of myself personal growth  - an extraordinary trip with A Fresh Chapter.  

This March I have been selected to join a small group of people who have experienced cancer on a humanitarian partnership in India.   Once we arrive in New Dehli we will join with Cross-Cultural Solutions - an organization that  places volunteers depending on interest and experience with local community projects such as teaching English in underfunded schools or working at Mother Teresa's Home for the Destitute and Dying (Fingers crossed there is a good chance this is where I will be).

For two weeks we will volunteer in some of the most poverty stricken areas of the world while serving as cancer ambassadors in an area where cancer is often associated with secrecy, shame and stigma.  In the afternoon we will (safely) experience the vibrant culture of India - sip chai with fellow cancer survivors, experience the Color Festival and watch the sun rise over the Taj Majal. 

It is a once in a lifetime experience.  Frankly, the idea of participating in this program simultaneously terrifies me and is all I can think about.  I've never travelled internationally - let alone with strangers to such desperate conditions.  I also will need to fund raise my heart out in order to be able to finance this crazy venture.

But I also know big dreams should scare you a little - that's the place where you grow.  And simply changing one's perspective can be a powerful catalyst.  I should know. I've been able to reach more people and create more change than I ever imagined possible through simply sharing my journey from nurse to patient.  

So perhaps it is fitting the next phase in my recovery would also begin with a journey. 


Click here to donate.  

Please consider making a donation to help me turn the page to my own fresh chapter.  Any amount helps (fund raising deadlines are closing in fast) and I appreciate it more than you could know. 

A Fresh Chapter (Alliance Foundation) is a Project in affiliation with Social and Environmental Entrepreneurs (SEE) a non profit public charity exempt from federal income tax under Section 501(c)(3) of the Internal Revenue Code. Donations will be used to cover program related costs and all US Donations of $100+ are eligible for a tax receipt. 

Thank you for your support!

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.

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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.

http://www.metavivor.org

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.

www.sevenly.com

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.  

www.stupiddumbbreastcancer.com

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.

www.warriorsinpink.ford.com



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.

Saturday, August 29, 2015

Kesem means Magic.

Being a parent with cancer is tough.  It takes the resources of an entire village to make it through brutal treatments and financial devastation.  But through all of that mayhem, it's the littlest members of the tribe who may suffer the most.

Children with parents who have cancer are forced to grow up too fast.  They experience fears and realities that no child should.  Heck - no grown up should.  And because children may be afraid to cause more stress for their already stressed-to-the-max family, these fears may go unspoken - only to reemerge at unexpected times in the future.

This was taken the summer of 2012 - their first
time at Camp Kesem (and our very first weekend with Finn)
Because that's what happens when you don't deal with difficult stuff.  The emotions swallowed down into the depths of your psyche will eventually need to be puked up again - like a cat with a hairball. And frankly, I don't want my kids to have emotional hairballs.

So, I do what any good mom would in this circumstance - I send my kids to camp.

Now this is not just any-ole'-camp. Camp Kesem is a national organization which focuses on supporting children who have a parent affected by cancer - an often overlooked population in need of TLC.  These week-long, non-denominational camp experiences are provided free of charge to the campers and run by uber-dedicated college students around the country.  And though trained staff are on hand to deal with emotional hairballs that come up - the goal is to provide a safe place for kids to just be kids.

In short, Camp Kesem provides a jam-packed, amazing week of childhood spent with others who "get it".  For families like mine, it is Kid-topia.
Home away from home.

In fact, even the name "Kesem" was chosen by the Stanford University students who started the program in 2000 because it means "magic" in Hebrew.   That was their goal - to provide a magical experience for these children and their families.

All these years later, Camp Kesem certainly lives up to its name.

What's more, this program provides the college student counselors - many of whom have personal ties to cancer - with solid leadership, fund-raising and project management skills as well as a boat load of feel-good stories that look great on a resume but even better on a bucket list.  In short, Camp Kesem is a goodie - worthy of philanthropy dollars if you have 'em and word-of-mouth if you know of families who may benefit.

Herding Cats - Photo credit Camp Kesem UW
Still can't wrap your head around what goes on there?  Here's what camp is like from a parent perspective.

Our kids attend Camp Kesem UW, which takes place at a picturesque site near Cle Elum (about 4 hours from our home but well worth the drive).  However there are more than 62 chapters across the country. (Find a Camp Kesem chapter near you here.)

With more than 90 kids in attendance this year, camp check in (which can take place at either the UW campus or at the camp depending on preference) can feel a little like "herding cats" as the kids recognize friends, hug their favorite counselors and compare cabin notes - all the while hauling around bedding and luggage approximately twice their weight.  But once contact information is verified, medications are collected and luggage is loaded up on the bus, the hive begins to calm down a bit.
This year's photo - a little taller and different hat logo.

Next comes name selection.  All counselors and kids choose a name for themselves which will be their camp persona for the entire week.  This is a brilliant move, in my mind, because choosing a new name effectively allows these kids the ability to shed "real life" and step into the camp world.  This year my not-so-littles dubbed themselves Hershey's and Ace but in years past we've had a Pancakes, Ninja and TRex.

Finally, I finish dropping the kids off (once they start giving me the "Mooooom are you seriously still here" look), listen to a David Sedaris audio book on the way home, cry a little about how grown up my kids are and then spend the entire week stalking Camp Kesem UW's Facebook site hoping to catch a glimpse of what my kids are up to.  (Also I go on lots of guilt-free dates with hunky hubby - there are many perks to this program!)

Meanwhile, the kids are up to their eyeballs in kid-tastic events that include archery (T got "about 10
Hersheys and crew.
Photo Credit Camp Kesem UW
bulls eyes"), swimming (both passed their "deep-end" swimming test), prank wars (M packed an entire roll of saran wrap this year - I didn't even question it), tie-dying, hikes and various shenanigans lead by the seemingly tireless counselors with quirky names of their own such as Scout, Marshmallow, Squid and Wonderbread.

A perennial favorite for my kiddos is "Messy Olympics".  Each year, the campers are instructed to bring an outfit that can get messy absolutely destroyed - and it will be.  In fact, this year's inspired Messy Olympic line-up may as well have been thought up by sadistic Oxi-clean execs -  Paint Twister, Pancake Batter and Syrup Slip-and-Slide, Shaving Cream and Flour Fights, as well as something involving butter and sticking cheerios to faces.  All of this culminated with a giant food fight with the game "left overs" followed by a group picture and good old-fashioned hose down.

Once the dust (and flour) settles, the kids look like cereal-encrusted Braveheart extras - but are
I'm not entirely sure my kids are in this photo
but I think it captures Messy Olympics nicely.
Photo credit Camp Kesem UW
grinning from ear-to-ear.

There's also an "Empowerment Night" where the kids are encouraged to safely share with their cabin-mates and support each other as they talk about their experiences with cancer.  This powerful night helps teach these kids to trust others, to express empathy and to talk about their feelings - lessons that will help them long after their days of camp are done.

At the end of the week, our kids are finally extracted collected and they spend the next few weeks speaking in camp code, singing songs and reminiscing about the adventures they have shared.  Then school starts up and the busy business of the year sucks us under for a while.

Finn's spot on the couch while the kids are at camp.
But typically before the first frost the kids begin their countdown of the days before Camp Kesem starts up again.

And I can't say I blame them - Kesem is magic.

In fact, the only one who could possibly have a negative thing to say about Camp Kesem is Finn.

But that's only because he wishes he could go too.

(*Note:  Camp Kesem is able to accomplish all this magic because of generous donations and year-round fund raisers.  Go to http://campkesem.org to learn more about this amazing program and how you can help keep the magic flowing!)






Saturday, July 11, 2015

The Young and the Breast-less

2012 Bon Voyage to the Ta-Ta's
boobie cakes- complete with marshmallow
nipples and suspicious malt-ball lumps.
Don't get me wrong, I think breasts are great.

They make fabulous accessories,  hold up a sundress, are the personification of womanhood, heck - they can even make food.

And of course the media loves them too.  Each day in our country, breasts are coveted, idolized, regulated, fixated on, demonized and discussed.

America -for the most part- is "a boob guy."

Which is why it often comes as some surprise when I divulge I am happier without them.

Full disclosure - choosing to remain breast-less after cancer treatment wasn't exactly my first choice.  In fact, as I learned about my breast reconstruction options, I would have rated this game plan somewhere between "S" and "V".  But after suffering through excruciating pain and various complications, a surgical site infection landed me back in the hospital a month after my bilateral mastectomy.  Before you can say double-d's, my best-laid-plans made a sharp left turn and the breast reconstruction was urgently reversed.  It was then, lying on a hospital gurney in the twilight moments before anesthesia took hold, that I made the bravest decision of my life - I would not pursue reconstruction in the future.

Knowing what I do now, about complication rates and satisfaction scores, I'm not sure I would have gone down the reconstruction route in the first place.  Ironically, three years after losing my breasts and letting go of "conventional" standards of beauty, I feel more confident than ever.  And I got to that point not through obtaining surgically constructed lumps on my chest, but rather by discovering that I am still me without them.  

Don't get me wrong - I am well aware the decision not to pursue reconstruction is not for everyone.  Many women are very happy with their breast reconstruction results - and that's great (Team boobie - remember?).  But for the ladies out there who are on the fence and finding, as I did, that the "breast-less" camp is a little on the quiet side - this one's for you.

The Perks of Less-than-a-Handful

1.  There are better ways to be served sugar-free jello.  

Hospital food is not all that great and frankly, if you choose breast reconstruction you will be eating a lot of it.

Even in the best case scenario, reconstruction procedures are incredibly complex and are often riddled with complications such as scarring, required revisions and unfortunately in my case - infection.  Before all is said and done, most women who choose reconstruction will require 3-4 major surgeries to complete the job and some women I've known have endured eight or more.   To make matters worse, methods involving implants tends to be a little on the high maintenance side.  Even routine follow up includes frequent MRI and implant change out every 10 years - a fact that is often glossed over by surgeons peddling their wares.

Surgeons are also quick to note there have been many advances made in the field of breast reconstruction - which is true.  Tram-Flap, Lat-Flap or DIEP procedures are the new gold standard in surgically obtained boobie bliss - but also come with their share of risks.  For those of you who may not be fluent in recon-lingo, here's a synopsis (but you can read more about the various procedures here.):

First the latissimus dorsi (back) or abdominus rectus (stomach) muscle is removed and transplanted to the woman's chest.  The muscle is cut into a breast shape, fashioned into a pocket and surgically re-attached.  Later, the pocket is filled with fat obtained from elsewhere on the woman's body such as her butt or abdomen.  Then bing, bang, boom - you've got a couple of boobies.  What could possibly go wrong?

It turns out, a lot - including tissue necrosis, infection, pain syndromes and even death.

And don't get me started on nipples which, in some cases, can be removed and reattached, constructed from tissue grafted from the thigh or even colored in via 3-d tattoo methods.
(Strangely, it was the nipple options that were most distressing to me when I first met with my plastic surgeon.  At one point I just about lost my shit and demanded to see a photo gallery of previous work done by their "nipple artist".  It was not my finest moment - and turned out to be a moot point - but you can read about these shenanigans here.)

Regardless of the reconstruction option chosen, nothing will result in returning the breast(s) stolen cancer and all require logging a whole lot of hospital hours.  Frankly, in the immortal words of Ms. Sweet Brown - Ain't nobody got time for that.

Certainly not this kid.

2.  Options are a good thing.

By some estimates, more than 58% of women who undergo mastectomy will either chose not to
Of course - this would be my egg.
reconstruct or later deconstruct.  And yet, even in the medical world the decision is still treated as an anomaly.  I've heard stories from women who were forced to undergo psychiatric evaluation when they opted out of reconstruction and others who requested a flat chest only to awaken from anesthesia with baggy pockets of loose skin retained -against her wishes- to allow for easier reconstruction if she happened to change her mind in the future.

The audacity of a surgeon who would make such a decision - because a woman couldn't possibly live a valuable existence without the presence of breasts - is astounding to me and fodder for a malpractice suit.  But thankfully, my surgeon respected the decision to stop when I did - even if it was not the route he would have chosen.

Three years out, I feel no reduction in my femininity and am thrilled with the options this route opened up to me - including the ability to choose when, or if, I wear breasts.

It took about a year for nerve pain to quiet enough for me to be comfortable wearing prosthetics and today I do so about half the time.  For those not in "the know" - wearing a prosthetic is sort of like donning a Victoria's Secret water bra - but on crack.  Though they come in just about any size, shape or material you can imagine, the ones I wear most often are silicon and slip easily into a pocket which can be sewn into just about any regular bra or swim suit.

And because I am bilaterally flat and not bound to matching with a contralateral breast, over the last three years I have amassed a collection of boobies which amuses me to no end.  I have work boobs (B cup, regular) and date boobs (C, perky), swim boobs (weighted to avoid an unfortunate "float") and cotton boobs (great for working out).  I have boobs for every occasion and collect the latest models the way some girls do shoes.  But the best part is, depending on what I am wearing, I often opt out of boobs entirely - which is just about the most comfortable thing imaginable.  Puts a whole new spin on "casual Fridays" at the office, doesn't it?

***Side note: Having a bilateral mastectomy has also lead to great conversations with my kids about boobies not being bean bags and interrogations about where they put my "work boobs" - which should be great material for them when they eventually need therapy as adults.

3.  Decreased Risk.

As much as I'd like to tell you having a bilateral mastectomy instead of a single improved my survival odds after cancer popped up in my right breast - I can't.  Actually, the odds of a new primary tumor in the contralateral breast is pretty small - probably a 3% reduction in risk overall.

What many doctors do not take into consideration is that even when cancer treatment is complete, it's never really over.  If I had chosen to keep my left (cancer-free) breast, I would have been subjected to increased scrutiny and imaging for the rest of my life.  And because of my history, every blip on the monitor would result in more testing and painful biopsies as well as the often understated scan-xiety - not to mention being compelled to complete reconstruction or wearing a prosthetic at all times to maintain symmetry.

In short, I would have been prisoner in my own body, which was something I had absolutely no interest in signing on to.

There is more to living than just survival statistics and I've never regretted my decision.

***Side note: by choosing a bilateral mastectomy I decreased my risk of purple nurple by 100% - and that is no small thing considering who I am married to.

Cancer has taught our family many valuable lessons.
But none quite so poignant as how to stuff a
mastectomy bra full of snacks.


4.  Mastectomy Bras have Untapped Storage Potential.

Speaking of awesome future therapy fodder, here's a little trivia for you:  Granola bars fit nicely into a mastectomy bra.  I know this for a fact because I once filled said mastectomy bra with a variety of snacks and then strapped it to my then 12-year-old daughter as she headed off to DisneyLand with her aunt and uncle.

Don't judge - Disney food is crazy expensive and strategically placed snack items are a great thing to have.  Plus, I just about died laughing when I hugged her good-bye and it made crinkle noises.

Because of this experience, I believe I may have stumbled upon an untapped storage market for mastectomy bras - and I am ready to test out my theory.  And, because I'm a big believer in sharing the life lessons I manage to acquire, I've accumulated a partial list of easily stash-able stuff for your own inspired sneakiness:

Banana chips.
Fruit snacks.
Money.
A flask of rum.
Gummy bears.
Ice packs on hot days.
Hand warmers on cold days.
Candy boxes the movie theatre.
Capri Sun juice box.
Gum.

So, there you go.  The next time you hug me and you think you hear a faint crackle - it's not your imagination.

And yes, I will probably share.


4.  Because - Screw Convention!

Though writing this may cause the editors of Cosmo to inflict a plague of great proportions (think: hipster mullets and shoulder pads) - convention is pretty overrated.

And to be perfectly honest, most people won't see whatever it is you don't like about yourself  because they are far too busy with their own weird hang ups.  So be healthy, love who you are and make peace with your body.



Life is just too short for any other route.



   



Monday, July 6, 2015

Running In Circles.

Procession of the Unknown Soldier.
Cancer years are a little like dog years - each is filled with enough loss and love, decisions and determination to make up at least seven "normal years".  And in the circles I run with, these years are unfortunately punctuated with more than our share of grief.

The reality is, more than 40,000 deaths are attributed to breast cancer each year, and some of these will be my friends and fellow advocates.  Each and every death inflicts loss - to the families left behind, the breast cancer community and society as a whole.  Each carries with it a shroud of stories and perspectives forever silenced by this insidious disease.

These deaths are a tragic reminder of the importance of advocacy and why we cannot afford to lose focus in our quest to end this disease.

But some losses will inevitably hit closer to home than others.
As far as the eye can see.

When Barbie Ritzco died earlier this year it was a crushing defeat for the breast cancer community.  She was a great woman known for her strength, bravado and a feisty can-do spirit. And though I knew her for only a short time, it was easy to see why she had earned the respect of those who spent time in the trenches alongside her.

Barbie and I bonded over a shared love of tattoos and the decision to forgo reconstruction.  At that time she was the only other young person I'd known who was as vehement about this choice as I was. And when Barbie died it was the first time I fully realized the gravity of the disease we shared.

She was many things to many people, but to me, Barbie represented all of us.  So, last month, while in the DC area for a BCRP panel, I decided to make good on a promise to meet up with the great Warrior Queen the only way I possibly could - at her final resting place in Arlington Cemetery.

Eternal.
At the risk of sounding hyperbolic, Arlington  is much more moving than I could have ever imagined.  The sheer magnitude of those perfectly placed marble tablets standing at attention across endless rolling hills would cause even the most hardened cynic to wipe a tear or two.  

Arlington embodies American sacrifice and honor in a way that is nearly impossible to put into words - though many have tried.  It is also a very real testament to the tragedy of war and life cut down too soon.  

And it was here, amid this reverent landscape that I finally met my friend.

Though the grounds were solemn and steeped in ceremony, as I made my way to Barbie's grave, I didn't feel as sad as I feared I might.  Arlington is something special, and perched high on a wall amid all those brave men and women - the young soldier didn't seem quite so alone.

This, of course, was not the meet-up we should have had - shared drinks and tattooed tales.  But being able to pay my respect in person is something I will always be thankful for. As I gazed upon that marbled wall, I realized that although Barbie's life was far too short, the flame lit through her message and spirit will live on through all she touched.

And perhaps, that is the most any of us can ever hope to accomplish.

Perhaps, this alone, is enough.

Rest at ease, dear Soldier.  For we shall carry your post.






Tuesday, April 28, 2015

What to Expect When You're Expecting, Cancer.

(***Writer's Note:  I have a big time nerd crush on oncology guru Dr. Susan Love - and for a variety of reasons. Not only did she literally write "the book" on breast cancer The Breast Book, she is also a fierce advocate for quality of life issues and a leader in supporting meaningful research.  Plus, I love a lady who's not afraid to tell it like it is.  So, when I was approached by one of the higher ups from the Dr. Susan Love Research Foundation asking if I'd be interested in writing a Mother's Day post for them - I jumped at the chance.  The following is the result of that request, along with a few throw back photos just to pique your interest. You can read the original version at http://blog.dslrf.org**)

Armed with an overconfidence only youth can supply, I entered into motherhood the way most newbies do - under the false pretense of knowing what the heck I was getting into. 

Showing off the baby belly when clearly we should be sleeping.
In hindsight, there was probably no way to prepare for the experience of having ones heart take up residence in the bodies of tiny people intent on running amok.  Though my husband and I certainly tried our best to get ready. Before each pregnancy I dutifully checked off each "mandatory" item on the infant layette, not realizing the most valuable purchase would be a new french press. 

Over the years, my husband and I have muddled through parenting the old fashioned way - by making mistakes and realizing that even the most trying times can often be endured through tincture of love, humor and very strong coffee.


But even still, there are times that humble us.  

Before I became a mother I could certainly never have fathomed the grief I would feel nearly ten years later when I received a diagnosis that changed the course of our lives.  This grief would threaten to swallow me whole as I struggled to explain to my young children that their mommy had breast cancer.  In those first broken-hearted days before invasive treatments would shake our family to the core, I struggled in vain to hold back tears as I answered the questions that bubbled up from beneath the fragile innocence of their childhood.  If my job was to protect my children against the dark fears of the world - I felt I had failed.

There is no "What to Expect when You're Expecting Cancer" parenting handbook - at least none that I've ever found.  Probably because few people truly expect something like this will happen to them. 

I certainly didn't see it coming.
Brand Newbies.

At 32, with no family history or significant risk factors, I was woefully unprepared for a diagnosis of invasive breast cancer.  And though, as a nurse, medical lingo held few mysteries and I understood the implications of an aggressive tumor laced through my lymph nodes - I could never have predicted the ripple effect this diagnosis would have on my friends, family and life as I knew it. Let alone the effects cancer treatment would have on my children and my confidence as a parent.
Several months ago, just two years after my own diagnosis, my confidence was further shaken when my mother received a call from her physician after a routine mammogram.  Before you can say "genetics counseling" my own sweet momma had joined the club nobody wants to join and our family was thrust back into Cancerland.  But, like more than 70% of all breast cancers, there is no genetic link yet discovered that would explain a familial predisposition toward developing this disease.  Regardless, our family tree has become a much more ominous presence in day-to-day conversations.  Though no cancer gene has been identified, blighted tendrils seem to lurk in the shadows of each branch.
The truth is, there is no "fair" in cancer.  Breast cancer does not care that I have stories to write, children to raise and a mother to love.  It is not concerned that caustic treatments left my once strong body broken and scarred or my finances in ruin.  Cancer does not care.  But thankfully, others do. Because of the work by organizations such as the Dr. Susan Love Research Foundation and Army of Women, meaningful research is taking place every day which may lead to the breakthroughs of tomorrow.  This is important because for the sake of our mothers, our daughters and ourselves, science must stay one step ahead of this disease.  

Being able to watch my children grow up is one side effect of cancer treatment I am happy to take on.  And thanks to the Dr. Susan Love Research Foundation, I believe we are well on our way towards moving beyond a cure and eradicating this disease. 
Quality time with Peanut.
A task this formidable will require all hands on deck.  And because, I am well aware of how daunting it can be to cross "Make the World a Better Place" off a to-do list, here are a few ideas to get you started.
Money Talks.
Money may not buy happiness, but it can fund research studies - which is almost the same thing.  But if your couch cushions are all tapped out these days, you may want to take a tip from the elementary school crowd and host your own fund raiser.  From car washes to yard sales or even a mother-daughter bake sale - you may be surprised by the funds that can be raised in a weekend with just some elbow grease and a little good will. 

Donations to the Dr. Susan Love Foundation will be used to further breast cancer research and allow them to invest in the research that will ultimately take us beyond a cure to end this disease.  

Walk with Love.

On May 17, you have the opportunity to join the good doctor and more than 1,000 of her closest friends on a journey to end breast cancer at the annual Walk with Love fundraisers.  Last year the event raised more than $248,000 with all proceeds benefiting breast cancer research at Dr. Susan Love Research Foundation.

But movers and shakers not local to the Palisades need not feel left out - there are virtual options for the event as well.  Sign up today or read more information at http://dslrf.org

Donate to Science - Literally.
Baby Love Circa 1983.


It's no secret women are underrepresented in clinical trials. But instead of shrugging shoulders at the obvious gender disparity in research Dr. Susan Love decided to do something about it.  Namely, she found a way to connect women to oncology research trials across the country through a novel program called Army of Women.
Here's how it works:  1.  Determine that you are, in fact, a woman.  2.  Go to www.armyofwomen.org and fill out a short questionnaire.  3.  Wait for researchers to contact you about research trials you may be a candidate for.
Boom.  Science - it's that easy.
Some of these trials require a history or family history of cancer.  Others do not.  Most require some sort of tissue or blood sample which can be drawn the next time you are at the doctor's office and shipped to the corresponding research lab to evaluate for genetic markers.  (There is a particularly fascinating trial going on right now which is enrolling pregnant women with no history of cancer that will evaluate potentially protective biomarkers found in breast milk.)
Participation in any of these trials is the most effective way to "donate to research".  In the process, your contribution will also help to end gender disparity in medicine and may even help lead to the scientific breakthroughs of the future.  Not a bad way to spend the morning, if I do say so myself.