GO FLY A KITE: DIGITALLY REMASTERED EDITION

Note from AM:

I wrote this in August of 2011 when this blog was about one month old.  It is digitally remastered (read: edits) to make some corrections and to be a little more pointed because, well... in August of 2011, I was confusing diplomacy with too much caution.  I was also, frankly, intimidated by my ability to write a coherent blog post, the brilliance of everyone around me in the blog world and a whole HOST of other things.

In reading this again, nearly two years after I originally wrote the piece, my position may have been unclear in an attempt to pacify.  While I hope to ALWAYS maintain diplomacy and to be respectful of views that may be the polar opposite of my own, I don't want to blurry my opinions or sacrifice my value system because my words may cause some to get irritated. Express your irritation.  I'm listening.  Just remember, in order for people to hear, follow the rules of the playground.

Play Nicely.

All somehow connected here?  A maelstrom of topics: my dad, my mom, my chemo, my niece, #No Stigma, Lauren Terrazzano, UALC, Lawsuits for the Cure, Bullies and PLAYING NICELY.

Most importantly, I share this post to honor the life of Lauren on the anniversary of her death-May 16, 2007

(I meant to correct this last night....the anniversary of Lauren's death was yesterday... May 15th)

From August 2011

I have often been accused of playing detective but the fact of the matter is I don’t generally dig for information (unless, of course, I’m on one of my internet hunting quests for information, MEDICAL information).  Generally, I will stumble over something and last week, I stumbled upon information that troubled me.  In fact, it upset me and I took it very personally.

This is a bit complicated and is quite lengthy.  I’m a bleeding heart?  Maybe.  This is crossing a line?  Could be.  Most times, I just keep my mouth shut, but I’m finding the older I get, the less I worry about the consequences.  I’m exercising my rights under the first amendment.  I’m expressing an opinion about actions that I find a bit upsetting.

I have a VERY soft spot and an extremely special place in my heart that belongs to an event known as “Kites for a Cure.”  While this next sentence may seem like a randomly inserted thought, it is highly significant and directly connected to the prior thought.  Give it time and for heaven's sake, Pay Attention.  Four years ago, just as I was finishing up the active part of my treatment, my sister adopted a baby.

I began my active treatment in September of 2006.  First surgery, then all the post op stuff with my two surgeons, the saline “fill ups” in the tissue expanders and the joys of chemotherapy.  The day after Christmas 2006, my world was rocked.  (AS IF it wasn’t rocked enough with a cancer diagnosis) I had chemotherapy scheduled and immediately after, I was having lunch at my parent’s home.  It was just us. “The Kids”: my two brothers, my two sisters, me and all of our spouses.   The “invitation list” was clearly defined by mom.  Odd.

Chemo days sucked.  Period.  Some were worse than others.  This round, now that I’m thinking about it, was probably The #1 Bad Chemo Day on my list.  Despite my “great veins,” the needle had to be inserted into the back of my hand.  That shit hurts and the burning sensation of the drugs is far more pronounced when the path of the poison is through the back of the hand.  I don’t like needles in my hands.  It’s similar to the toothache thing.  Needles don’t bother me anywhere else, just stay the hell away from my hands.

I waited far too long to have my labs cleared by the oncologist, got stuck (yes, pun) with a needle in my hand, experienced the thrill of an annoying fire drill while hooked up to the IV, heard a couple of shouts of “call a code”  and I suddenly felt like I was the lead character in Judith Voirst’s 1972 award winning children’s book.  Before I even got to the really lousy part, I was well into “AnneMarie and the Terrible, Horrible, No Good, Very Bad Day.”

I did what every daughter on the planet does in similar situations, “If it’s not one thing, it’s your mother.”  Mom was insistent with this odd lunch request, Mom was the target of my frustration.  Everything was going wrong and as I worked myself into the irritation zone, I decided the person with whom I was most pissed off: definitely mom. (Sorry, mom, I know you are reading this… but until my brain engaged, I was A-nnoyed.)

She knew it was a chemo day.  Of ALL people, SHE should understand the only thing I would want to do when it was finished was go collapse on a sofa somewhere.  Food?  A crowded table??  This intimate luncheon was still a crowd of 12 people.  You MUST be kidding?!  HOW the hell could she be so insistent upon setting up a post Christmas extravaganza?  In my chemo fog, probably delusional from something that was dripping into my body, I realized mom definitely had an agenda.  (Note to mom, I immediately ceased being A-nnoyed and no longer blamed you for the fire drill or the fact that the TV in my chemo cubby was on the fritz, either). 

“She’s wants all of us there at the same time for a reason.  She is going to tell us something.”  I told that to my husband and began to explore the possible agenda.  It was about planning a family trip or some sort of party or something equally pleasant.  A pretty crappy year was coming to a close. My grandmother passed away in March.  My friend was diagnosed with that rare (medullary thyroid) cancer just weeks prior to my Nana’s passing.  I had a foot surgery to remove a neuroma (the stupid thing was destroying my ability to wear shoes worthy of conquering anything so it HAD TO GO).

Then, April rolled around and I got The Letter from the radiologist about “density” and “calcifications” and DING DING DING. I'm on the runaway train.  Apparently, the powers that be were not quite finished screwing me.  This is when I learned no circumstance is ever shitty enough to insulate me from more bad shit.  (Concept was solidified over the past year and now, as it rains down, I just defiantly shout, “Keep it coming, ya got more, I’m NOT going down.  Just KEEP IT COMING!).  There are times in life, although you may think, “enough is enough already,”  yet one more shoe is gonna fall.  And on December 26, 2006, that shoe came crashing.

We arrived at my parent’s home and I was not feeling too well.  I was wiped out, pasty pale and immediately ushered to a seat at the table with the necessitous can of ginger ale placed before me.  FYI-ginger ale now makes me SICK.  You know when you get a stomach bug and you wind up hurling.  You know how you remember the very last thing you actually ATE before the bug hit.  And finally, that particular food item is banished from your diet because it takes forever to disassociate it from the hurling?  Ginger ale, until THIS DAY, has that effect on me.

Sensing my need to crawl under a rock, mom quickly took to the floor and stopped the chatter and the cross talking and the laughter.  “I wanted you all here so I could tell you something.”  Here it comes.  “We are going on a giant family trip to Italy.”  Or, “Your dad and I hit lotto and each of you is sharing in the winnings,” as she walked around the table placing checks with lots of zeroes in front of each of us.  NOTHING remotely close.  And nothing happy.  What came out of her mouth was devastating in ways I can NOT begin to describe.

“You dad needs surgery.”  OK…. I was still not in the darkness that would follow within seconds of those words.  “He has 'something' on his lung and it needs to be removed.”  SERIOUSLY??  For the second time in less than six months, the oxygen was sucked from the room.  I remember putting my head down on the table and the tears just spilled from my eyes.  There was no defiant “keep it coming.”  It was a very upsetting and very sad, “OK, you WIN.  Can you please leave now?”

I will spare you the details of what went on the rest of that day or what happened in the seven months leading up to the day my dad (unexpectedly) said goodbye to us.  I think I am still (this is me, now, in 2013 speaking) incapable of writing about what happened to my dad.  And then, immediately thereafter, my mom.

It was in the midst of all of this horrible stuff that my sister adopted my niece.  She was not seeking to adopt a child.  It was one of those moments that make you step back and truly reflect upon the circle of life.  My godchild was born in March (the day before my LAST chemo) and was brought home by my sister when she was one month old.  She is the love of my life.  Not taking anything from my other nieces and nephews as each and every one of them is just as special and equally loved but this kid?  I can't quite put my finger on why she tugs at my heart, she just does.

A baby shower was planned because, despite the fact that I was not finished with my surgeries and my dad was not finished with his, either, we needed to celebrate.  No birthday or any other occasion was worthy of anything more than a forced smile.  The baby gave us a reason to be joyful and to celebrate LIFE. 

The point is almost here.  I promise.  There is however one more piece I have to add before I can fully assemble the puzzle.

Back in 2006 and early 2007, something in the local paper caught my eye.  There was a columnist named Lauren Terrazzano who was battling (keeping my "war word" from 2011 to show that I've grown and I've learned so much since entering the land of LISTENING) lung cancer.  She was young and she would occasionally write a column, “Life, With Cancer.”  As we were in the throes of planning the baby shower, Lauren passed away at MSKCC.  It was May of 2007.  She was only 39 years old.  Her passing was reported in newspapers all over this country.  I remember crying when I saw her name in the banner above the headline.  I have searched high and low for three hours to find her last column; It was printed posthumously in the same paper where her obituary appeared.

(Yes, it really is that important to me, and Yes, this young woman was worthy of my time even though I didn’t find the column I wanted.  She ABSOLUTELY made a difference and she should not be forgotten.  I did not know her personally or professionally, I was simply a fan of her writing, rooting for her to beat the disease and felt a connection in some odd way.  We were both patients at the same hospital.  Yes, I am WELL aware there are millions of Sloan Kettering patients, but still, seeing the news made me cry.  I’m pretty sure if she is watching what this rant is about, she is fist pumping.  She would not like what is going on here. I know it.)

Another 2013 observation:  WHO could have guessed that over a year later, I would be corresponding with her dad, that I would have a booklet of ALL of her columns sent to me by her dad, that I would be connected to her because of the magic that is twitter....

Back in baby shower planning, we were discussing what, if anything, to do about a favor.  Personally, I never attend a shower or a wedding or any sort of party with an overwhelming desire to see The Favor.  They are costly, usually an item you neither need nor want, require tremendous thought on the part of the party host(ess) and then additional energy and expense to wrap the damn things and adorn them with properly festive bows and stickers.

I know, I know!  How does Lauren Terrazzano fit into this story?  In her last column, she told her readers to “go fly a kite.”  She was bringing attention to a fund raising event that would be taking place on a Long Island beach over Memorial Day weekend.  I suggested that we might want to see about “flying a kite” in as a way of honoring dad who was so weak but getting better each day.  Arrangements were made directly with what was then known as Joan’s Legacy.  We made a donation, someone flew a kite on our behalf and we wrapped up Hershey bars which were on the tables at the baby shower with a note about the donation, “in lieu of a favor…. we flew a kite"

AT LAST, The Point!  “Kites for A Cure” is an intimate part of the tapestry of my life.  The deep love I have for my dad and for my baby goddaughter spills over and connects me to this event.  The kite fundraiser, which I believe started with that one event, on one beach back in 2007 when we had a kite flown for dad, has now become a signature event.

Joan’s Legacy was started by a woman who lost her sister to lung cancer.  Her mom died of lung cancer and when her sister, Joan was diagnosed (and died) twenty years later, she learned there was absolutely nothing new in the treatment of Stage IV lung cancer.

Does that story sound vaguely familiar?  A sister determined to make a difference.  A sister who does not want the loss of her sister to be forgotten.  A sister who wants to advance cancer research.  Yeah... thought so....  Of course it's familiar. It's got the name of someone who has presently polarized the breast cancer community written all over it.  The difference? This sister's name is Mary Ann and even today, she has not allowed the organization she founded to stray from its mission.

Lung cancer is stigmatized.  Too many people immediately want to know, “How long did (s)he smoke?”  Neither of these women smoked.  And if they did?  We can't do the blame thing.  EVER.  Lauren called lung cancer the Ugly Betty of cancers.  I call it disgraceful to EVER shame anyone with ANY disease.  Where is our compassion?  So forgotten and underfunded is lung cancer, I believe its “ribbon” is clear.  I don’t want to get into those statistics because I’ve already gone off in too many directions.

What’s my gripe?  I started with a gripe.  And before I gripe, I want to be clear my ONLY gripe is with the people at the VERY top.  I have nothing but respect for the people who work tirelessly and for those who volunteer their time and for those who participate in events.  I am not looking to piss off the masses.  I AM looking at a handful of people, the decision makers, and after I ask the rhetorical, “What are you THINKING?” I must say, SHAME ON YOU.  Remastered:  The question is no longer rhetorical.  I would really love some g'damn answers.

KOMEN For THE Cure rebranded itself in 2007.  Terminology invoking “For The Cure” or similar phrases containing the word “cure,” would not be tolerated by Komen.  MILLIONS of dollars, dollars DONATED to Komen for the cure were being spent, not towards a cure, but for attorney fees.  I believe these legal actions are fairly recent but they began to bully other organizations. (One of the links at the bottom goes into detail about the bully pulpit antics.) 

SeriousLY?  In the land of medical research for any ailment (again, no disrespect to anyone for just listing a few diseases):  Diabetes, ALS, Parkinsons, AIDS, ALL Cancers-Isn’t there one goal and JUST one goal?  Finding a CURE for the afflicted, finding well tolerated treatments to allow for treatment of deadly diseases as chronic conditions so we may save lives (with GOOD quality of life) then, perhaps even going a step further and leaping into PREVENTION……

Kites For A Cure, now a signature event for “Uniting Against Lung Cancer” (new name for Joan’s Legacy), was the target of one of these lawsuits.  Thanks to the generosity and kindness of the pro bono attorneys that stepped in on Kite’s behalf to defend against the lawsuit, the name was preserved.  UALC funded 7M in research grants as of 2010 (during their entire existence).   Komen’s numbers are in the hundreds of millions EVERY YEAR.

Was this necessary?  Really??  Their first event was in 2007, the same year Komen rebranded.  I don't think Joan's sister was trying to outdo Susan's sister with the name.  In fact, to pull off the kite flying event, my guess is that this whole concept was already in the works (and named) BEFORE Komen officially changed their name.  Maybe Kites should have gone after Komen?  Just amusing myself with stupid thoughts because I'm upset at the whole thing.  Kites will hold a special place in my heart forever.  If someone else picks on them in ten years, I'll be upset then, too.  I'm loyal.

(2013 preface to the next few paragraphs... don't get your panties in a knot...This is what was written THEN...)

I know Komen is a great organization (WTF was I THINKING?? I was obviously still quite ignorant) and is one who has served the breast cancer community very well (ok, EXTREMELY ignorant).  But, lines are getting blurred when there is such a need to “protect the brand.”  It flies in the face of the warm and fuzzy feel good imagery I like to associate with any non-profit ORGANIZATION (reminder to those at the top at Komen, an “organization” not a corporation).

I have a set of values by which I try to live.  If I have to justify my reasons for a particular action, I need to take a hard and honest look at those actions.  Komen has justified their reasons for these lawsuits over and over again.  We are all in this together.  Leave the little guys alone already.  The fact that you are justifying these lawsuits?  Maybe the money would be better spent in other ways?  Like trying to FIND The Cure, perhaps? 

Unfortunately, this is a very old story in a 24 hour news cycle.  I say unfortunately because this is worth of AC360’s Ridiculist.  Come to think of it, UALC presents annual “Joanie Awards” to recognize exceptional journalism about lung cancer. Anderson Cooper and the entire staff of AC360 were the 2006 recipients of the Joanie for a special they aired about Lung Cancer after the passing of Dana Reeve.  Lauren Terrazzano was the 2007 recipient.

We are all in the SAME fight……The fight for LIFE.

Chill out, already.  You can’t be the good guys and the playground bully, too.  I implore the people who are making these decisions.  NO ONE is ever going to take you down by using the word cure or the color pink.  You win.  You are the Alpha Dog in Breast Cancer Land.  We Surrender.  First place is yours.  Permanently.  (Nah, there is no surrender.... I'm in it for the long haul) In this circumstance, the adage does not apply.  This IS BAD publicity.  It puts the entire organization in a bad light over decisions being made by a few.  Stop using donor dollars to beat up on the little guys in court battles.

OK... the 2013 remastered comment on the prior paragraphs.... again, the learning curve.  It's time to reinvent yourselves. And yes, this is directly to Komen.  It's time to listen to those of us who are so intimately affected by breast cancer.  We Do Not Surrender.  We want to see something change.  We want to raise the right kind of awareness.  We want the information being disseminated to be fair, accurate and without any statistics being skewed to punctuate an agenda.  We WANT the money pie to be redivided.  We want transparency.  We want progress.  We want to peel back the pink and we want to untangle the ribbon.  Mostly, we want GOOD research and good care afforded to those in need.  Your pockets are still deep despite any hits you may have taken.  You want to protect your brand?  A few changes might go a long way.  We are no longer stupid.  We no longer blindly follow just because, "After all, it's Komen."      

In fact, as long as I've carried it this far, may I make a BOLD suggestion?  Why not redirect these legal resources to form a more collaborative research effort as outlined in the funding philosophy behind Uniting Against Lung Cancer:

".....bring researchers together across sectors and disciplines, using their collective knowledge to formulate new ideas and collaborations to move forward towards a cure."

If that can’t happen, why don’t you just go fly a kite?  Another remastered insert:  And yes, that would be to YOU, Komen.... 

Some additional info about this nonsense can be found here

Rachel's post which is now referred to in more places than I can recall.  In that post are links to many other exceptionally written articles over these lawsuits.

Remembering Lauren

Mom:  I do love you even though I was really irritated in 2006 but you already know that.....

Remastered insert based upon what I've watched in the world of breast cancer and the huge lessons I've learned over the past two years:  IF.... it's a big IF..... but I'm jaded and suspicious, IF I find other organizations, for profit or NOT, trying to protect their brands and trademark things (ahem, like our genes), I will take a no holds barred approach to opening my mouth about it.  The not for profits make me crazy.  People aren't donating money for giant UNEARNED salaries and they certainly aren't of the mindset that their donor dollars are being used for LAWSUITS.  Consider yourselves warned.

My final 2013 postscript.  I have arranged to have two kites flown in the event on Long Island at the end of this month. One is in memory of my dad and the other is to honor the life of Lauren.  Her story, her life, her legacy inspires me every day to stand up on behalf of those who can't stand up for themselves AND to stand beside those who work tirelessly to advocate for lung cancer patients, especially my twitter pals, Lisa and Deana Hendrickson (@LungCancerFaces). And, of course, my dad who has provided me with a blueprint for life: the first man I ever loved and the man who will forever be the wind beneath my wings.