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Thursday, May 31, 2012

A WRITING CHALLENGE - AM STYLE


I HAVE CLOSED THE COMMENTS ON THIS PARTICULAR POST SINCE THE ROBOTS SEEM TO LOVE THIS POST.  IT IS BEING READ QUITE FREQUENTLY....  IF ANYONE STUMBLES ON THIS POST AND WANTS TO SAY SOMETHING, JUST LEAVE ME A COMMENT IN ANY POST AND I'LL MOVE IT HERE.



Yesterday, Marie Ennis O’Connor started quite a discussion on her blog.  It’s a must read but if you want to finish this first, I’ll give you a VERY brief synopsis.  Once again, she brought the importance of our words back into the spotlight.   Specifically, Marie talks about the death notices of Robin Gibb and those ever-famous words, “lost his battle.”

That’s all you are getting from me.  You have to read the piece and the comments.  She’s eloquent.  I’m the mostly irreverent, wise cracking court jester.   Her words were very timely for me.  The night before, I was up far too late.   This social media stuff is killing me.  First, it was the west coasters.  As I’m staring at my carriage, which is about to be turned back into a pumpkin, they are watching prime time TV.  THEN, I set my sites east.  Coffee is being poured on the other side of the Atlantic.  As the songs goes, “Here I am……clowns to the left of me, jokers to the right, stuck in the middle.”  The only difference?  I am the clown, the joker AND the one stuck in the middle.

Why was up I too late the other night?  I read something posted on Ann’s Facebook page.  Ann is a Stage IV patient (and she was attacked on her OWN blog about how she should be eating better which PISSED ME OFF since, when one is retching from the toxins being coursed through one’s veins, ANY calories count…but I’m totally off topic here).

Ann took exception with something that was posted in an online support forum.  The section of this forum is specifically for Stage IV breast cancer patients and a caregiver decided it would be a good idea to share her sorrow about her mom’s rapidly deteriorating condition.  I don’t begrudge anyone who needs to reach out for support.  BUT, if a particular area in a support forum is set up for a specific group of people, I don’t think it’s appropriate for anyone who is NOT a part of "that club" to participate unless they tread very very VERY lightly.  At most, empathize.  But, a “war” story describing in graphic detail, the horrors of the way death is unfolding?  When the “audience” is a group of TERMINAL breast cancer patients?

Words Matter.  Those words were simply out of line.  Way out of line.

When I read Marie’s blog yesterday morning, I remembered that her suggestion that we consider hosting “writing challenges” on our blogs.  In my typical, long-winded fashion, I’ve finally arrived at the real reason for this post.  I’ve come up with my own writing challenge and I hope at least some of you will share your thoughts with me.

What are those phrases, those words, those things you’ve heard spoken (or written) that have caused you to become irritated?  Annoyed?  Angered to the “I’ll seriously hurt you” point?  Gotten cranky over?  Were they said to you?  About you?

No rules.  It’s a free for all on this blog.  Share away.  If you want it to be A Real Challenge, just select ONE.  Me?  Not so much on the picking one thing.  I’m just cranky over everything.

I will start.  It’s only fair.

Here’s something that was repeated to me.  It was a bit of advice dispensed to a breast cancer patient.  I’m wound pretty tightly so most everything will set me in motion but this HAD to have been as close to “I’ll punch your lights out” as it gets.  If the words were spoken to me, about me, I’m pretty sure a closed fist would have followed.

“You obviously aren’t praying hard enough or you would be better.”

Your turn.  Go!



Wednesday, May 30, 2012

WHO IS JACK ANDRAKA ???

Do you know the answer?

I stumbled upon something from a news feed.  That's why I know his name.  Mostly, I saw a video.  Not THIS video, but another video.

This is Jack Andraka.  He is discussing his entry in the Intel International Science and Engineering Fair.  He's 15 years old. He's a high school freshman.  He's a genius.  In this video, he explains his entry in far greater detail than I can comprehend.  It's a test to detect pancreatic cancer.  He targeted pancreatic cancer for personal reasons.  With some modifications, and IF IF IF I am understanding this, there may be a version of this test for both ovarian and lung cancer. Those are three major players in the "We Suck at Treating These Cancers Because We Generally Find Them At Very Late Stages" ......




Jack sent his proposed research plan to roughly 200 different people.  These young people do their work in REAL labs in collaboration with experienced researchers.  In Jack's case, that would be Dr. Anirban Maitra, a professor at Johns Hopkins School of Medicine.  He was the only one who was willing to give Jack an opportunity to explore his ideas and it was in the lab of Dr. Maitra that this groundbreaking test to detect pancreatic cancer was developed.

I have these strips that I use to test the water in my swimming pool.  I dip the strip into the water and compare the colors against those on the container.  I can determine, among other things, if the water is properly chlorinated and if the pH level is within an acceptable range.  All based upon the colors on the test strip.

Jack's test is similar.  It's NON invasive.  It's a dip-stick sensor to test either blood or urine for early stage pancreatic cancer.  When it's treatable.  The test held up in a study and it was found to be 28 times faster, 28 times LESS expensive and over 100 times more sensitive than current tests.  Accuracy?  Over 90% of the time, the test was accurate.

Jack is a young man who had an idea.  What sparked that idea to move him to these levels?  He says he had an idea when sitting in a biology class.  I say it was far more than "an idea" and kudos to Dr. Maitra for taking a chance.... for giving Jack a platform and the support to see where his idea would take him.

His idea will soon be taking him to The US Patent and Trademark Office.  The patent is pending.  The $75,000 prize that Jack says he will be saving for his college education?  Ah, the innocence of the young.  Does this exceptionally brilliant young man think he is actually going to PAY for his education?  The colleges have already lined up around the block with their offers of "a full ride."  He hasn't even taken his SAT's if he's following normal academic high school routine.  He's a FRESHMAN.  With FRESH ideas.

He can take the $75K and do what most other young men his age would do.  First, get mom some flowers for providing the transportation from school to the lab.  Not that mom wants them.  Mom's gift was just knowing Jack was working in a world class lab.  Making it to the finals?  The icing.  Winning?  There's really nothing on the mom-o-meter to properly capture the emotions she had to feel when she heard his name announced.  NONE.

So, Jack...... Rest assured.  College?  From undergrad through post doctoral..... all covered.

My suggestion, if I may?  Go buy a smokin' hot car.  That's what all guys in high school strive to achieve.  The First Car.  

Actually, there is a minor issue.  Jack is too young to drive.

Tuesday, May 29, 2012

LOVE AND SUPPORT FOR MY BLOG BUDDY, ALLI

I am upset.  It's personal.  We are a pretty tightly knit group within the world of social media.  My friend, Alli who blogs at Life in Transition left a comment on something I wrote last week.  Her comment served as a reminder that I am very behind in my reading.  I bounced over to her blog and was ELATED to read that she is in a relationship with someone.

That was Friday afternoon.  While I was reading and expressing my joy, she was in the throes of a crisis.  She took the time to thank me for my comments on her blog while she, once again, had the oxygen sucked from her lungs.  I don't know how she had "it" to reply to my happy comment.  By "it" I mean any energy in any form whatsoever to do ANYTHING other than curl up in fetal position somewhere and just be damn angry.  I am.  Angry.  For Alli.  And for many others, but today, specifically, for Alli.

That blogroll on the side of this page is, as I've said plenty of times, mostly exclusive.  Exclusive as in....I read more blogs than I have listed, but generally I go from one blog to the next and then, immediately forget those I clicked to are not on my list.  I'm working on it..... I have the blogroll set up to include the title of the most recent post.  Its order changes constantly.  Blogger keeps track when someone adds a new entry.  And the blogroll is in chronological order with the most recently updated blog always in the top spot.

Last night, as I was winding down from a relaxing holiday weekend, I scanned the blogroll.  I didn't like the title of Alli's blog and immediately clicked over.  Apparently, Alli is now dealing with endometrial cancer.  According to what she was told on Friday, it "could be advanced" and it would appear it's likely the tamoxifen used to keep her breast cancer in check is the cause of the endometrial cancer.

There's no other information to share here.  Please make a note to check on Alli.  She's waiting to hear from her doctor regarding surgery which is the next step in determining what lies ahead.  I hope that the surgery is scheduled quickly and I hope the doctor is wrong.  Enough is enough already.  And THIS is enough.

I think when I bitch about the lack of meaningful research, there are some who want to say that things are different, things are better.  I'm not going to deny that we've all gotten doctorates in Early Detection.  Screening methods have gotten better, but early detection is still just what the words imply.  We are still hearing, "You have cancer."  We are just hearing it a tad sooner.  Thirty percent of those "early detected" cancers WILL still metastasize.

Surgery is not as radical as it was years ago.  No, I suppose not.  They are now "modified radical mastectomies" rather than plain old "radical mastectomies" but talk to one of my friends with a very early stage cancer whose surgical complications are ongoing and whose most recent complication was a collapsed lung.... And not just a simple collapsed lung but a pneumothorax which, if I understand her correctly, means her organs smashed into her heart.  I only know that she's been in and out of the hospital with scary low blood pressure numbers, many tests and emergency surgery.  For her very simple, early stage breast cancer.

Chemotherapy is better tolerated.  On this, I call bullshit All The Way.  Same drugs, same TOXIC drugs. They are given at different intervals to reduce the immediate side effects.  They are "perfecting" anti-nausea drugs which, for what it's worth, don't even come close to a good, old fashioned bag of weed.  Marijuana, which is NOT legal in this state but even if it happens to be legal in YOURS, IS still a violation of federal law.  The toxic chemo drugs are the same. They are even still in short supply.  Yes, there are new drugs on the scene and yes, there are vaccines being studied.  BUT..... it's twenty years or more of The Same Stuff and it ain't The Right Stuff, either.

Suppression of estrogen is known to be a key factor in helping keep the disease at bay for estrogen receptive cancers which are in the majority.  My mom was on tamoxifen after she was finished with her chemotherapy in1988.  My mom had her share of gynecologic issues over the years.  All related to the tamoxifen.  That, my friends, is the same damn tamoxifen that Alli was taking until most recently.  The same drug that they've known for all these years can cause uterine problems including cancer and they haven't found a method of minimizing THAT rather significant side effect.

Meaningful progress?  Where?  Can someone please point me in that direction because I don't see anything that resembles progress AT ALL......  Before we can add the adjective to this phrase, we need a noun.  Progress, according to Merriam Webster, "a forward or onward movement (as to an objective or to a goal)" is a noun and it's one we have yet to incorporate into the breast cancer conversation.

I don't care how many things we bathe in pink or how many ribbons are ceremoniously (really, a better word would be sanctimoniously) hung from the most prominent places around the world, there is no progress.  I defy anyone to argue differently.  Don't even try.  At least not with me.  I wasn't the beneficiary of any "so called progress."  Sell your snake oil elsewhere cuz I ain't buying it.  Period.

This concludes the highlights of the "where is the meaningful progress" portion of today's rant.  Of course, I strayed far from my point.  My friend.  Please.... Just keep Alli in your thoughts as this next mess plays out.  If she's not already your friend, she is MY friend and I'm very big of this friend of a friend thing.  

Alli.... sending love your way... and hopefully lots of support from anyone who stumbles upon my blog and may not already be reading yours.

xoxoxo  

 


Friday, May 25, 2012

IF YOU MUST BUY PINK, HEED THE SIGNS


It’s not easy being a smart ass.  It takes work.  It also requires fact checking.  I try not to jump to conclusions.  I try to keep my big mouth SHUT until I do a little digging.  It’s wrong to presume there is a self-serving agenda behind everything and everyone.  It’s me.  I’m jaded.  I’m suspicious.  I’ve been burned.  You know the way that goes.  Once bitten, twice shy…..  In my case, shy is hardly a word I would use to describe any aspect of my personality. 

Unfortunately, in most cases, an agenda is present and what’s even more unfortunate?  Most agendas are not for YOUR benefit.  You are being used to benefit An Agenda.  Someone else’s goals.  If you share common goals, it’s win win.  Being duped into playing a role in something without proper vetting is never a good idea.  You might find yourself participating and later realize it’s something you vehemently oppose. 

Let’s have the pink ribbon conversation one more time, shall we?  Some of us embrace the pink ribbon.  It makes us feel good.  Some of us abhor that ribbon because for us, it’s symbolic of decades of failure and a constant reminder of the senseless deaths that we blame directly on that failure.  Some of us could care less.   Those are the choices and we all fit into one of those three categories: Love it, Hate it, Don't give a shit.  Oh... I suppose there COULD be a fourth category although I have no idea in which galaxy this might exist but technically, category 4..... What's a pink ribbon?  Yeah.  Didn't think so.  Not even in my wildest fantasy dreams.

Moving right along......In this land of the free, I believe we must live with an understanding that we are all different and I’m not a proponent of cramming my feelings down another’s throat.  I will explain my position.  I will listen to theirs.  One of us may change our opinion.  Or not.  But in an honest and healthy discussion, in a constructive conversation, each party should walk away with a better understanding of views different than their own. 

This is good.  This is diversity.  This is what it means to be free and to live in a country where we have the ability to exercise our right to free speech.  Most importantly, in listening to others, we learn.  We broaden our views.   I believe my life is enriched each time I learn from another, whether we are polar opposites or we appear to be long lost twins separated at birth.

Similarly, the language of cancer elicits some rather strong opinions.  The war metaphors are distasteful to some of us.  To others, those words are empowering.   In the home of the brave, it’s not up to me to sit in judgment of others.  If those words are comforting, who am I to be critical of a grieving family for referring to the death of a loved one by using phrases like “lost her battle” or “after a brave and valiant fight.”  Because that’s not my preference, does that make it okay for me to impose my will upon others?  I think not.  It’s up to me to be a mindful and decent human being.  It’s up to me to respect the feelings of others.  That doesn’t mean I can’t state my opinion, but I’m mindful of the fact that this is solely my opinion.

I think my opinion is better than yours because I feel like inciting a riot at the moment.  I'll find the quote and give it proper credit but the fact is we aren't fighting any battles.  Our bodies are the battleground.  Littered with lingering toxins and who knows what else..... and then, we die.  We just die.  No fighting, no losing.  We already lost when we were told "Dude. Cancer."

If you’ve gotten this far and wonder what happened to The Real AnneMarie, hang on.  Tightly.  Here we go.  There are opinions, there are points of view and then, there ARE facts.  Let’s get back to the damn ribbon.  Whether you hate it or you are comforted being draped in pink, can we agree on this?  Breast cancer is not a brand and The Pink Ribbon isn’t its logo.  Can we agree that no one should be profiting from our misfortune in pulling the short straw.  The breast cancer straw.  Are we all okay with that?

If someone wants to slap a ribbon on a product, can we agree that we should know what’s happening with the money being made from the sale of that pink thingamajigee?  There is no one who broke this down and called Bullshit better than Rachel.  Her blog, The Cancer Culture Chronicles is filled with information on every item she ever found and every organization whose methodology wasn’t up to her standards.

We are not going to untangle this mess quickly or by attacking the problem haphazardly.  This is going to require the efforts of all of us.  If we do this in a very focused and carefully coordinated manner, we will succeed.  Let's ALL master these skills first and then use this as a foundation to go deeper.  As long as there are pink ribbons, let's make sure we are getting our money's worth.  Let's make sure WE, those for whom the pink bells toll, are squeezing every red cent out of those bills and then sending those dollars to people who are going to make sure to get the most bang for the buck, whether it's research, helping the underserved, assisting women after surgery, buying groceries... whatever matters to YOU... just make sure those who are spending YOUR money, are doing so wisely.  We have to start somewhere.  I think this is a good starting point.  Three simple questions. 
  • How much money from this purchase is being donated to a charitable organization (and is there a cap)
  • What organization is receiving the funds?
  • How does THAT organization spend their donor dollars? (Lumping a mess of stuff under the heading of "programs" is NOT an acceptable explanation for me, either.  Demand DETAILS)
I hope you will take the time to explore Rachel's blog.  Her information is far more intelligently written and explains these points in great detail.  And with a sarcasm and snark and quick wit that is uniquely Rachel.  She wasn't unreasonable as you can read for yourselves.

This is the last comment she left on my blog.  She died just weeks later.

"Great post here AM in wading through the subliminal tricks and slick marketing techniques we see all too often in the breast cancer universe. But I think you really hit it home in demanding honesty and transparency rather than playing on our fears. Some have interpreted my posts about Komen to mean that I'm anti-pink. No. What I want to see is this honesty and transparency. Given the amount of money that is at stake, why should we expect anything less?"   --Rachel Cheetham Moro


Yes, Rachel, why indeed?


Wednesday, May 23, 2012

BACK WHEN I WAS A CUB BLOGGER

I began blogging little more than ten months ago.  What follows is one of my very first entries.  It was just before the tenth anniversary of September 11.  While the references to 9/11 aren't relevant in May, my comparison between events of that day and breast cancer are more relevant today.  I could not have known how certain things and situations and mostly, PEOPLE would have touched my life when I wrote this.  I was a cub.  A rookie.  This is how I felt back in September.


Unlike the manic circles I watch when a dog chases its tail, (which tend to resemble the days of my life with increasing frequency), I noticed that a couple of things I mentioned in previous blog entries have also traveled in a circle.  Some of my observations generally stumbled upon via some form of distraction have been in recent news.  Case in point?  MY gummy bear implants that were a mere punch line in my very first blog entry are now at the center of a recent FDA hearing.  Full circle.

I am the person who refuses to leave any unturned stone while doing any sort of research.  From the ridiculous (does salted or sweet butter produce better cookies when following the recipe on the Nestle bag) to the sublime (stumbling upon drug shortage factoids and brain damaged mice from a particular chemotherapy drug) and back again.  Mostly, it’s been more ridiculous than sublime.  Mostly, this has been about laughing my way through the challenges of CB.

Information is power.  Cliché hell, again?  Perhaps.  I don’t know where my brain is going to take me today, I’m just letting my fingers do the walking.  I’m at the point in my cancer journey where I’m passing all of those dates, the biopsy, the diagnosis, the surgery, first chemo and it’s all five years ago.  I acknowledge each date with its proper deference as the dates have become part of the tapestry of my life. 

I‘ve become acquainted with a number of people in a very short period of time since I began The Chronicles of Post Chemo Life.  Brilliant bloggers, exuberant volunteers, sassy survivors and those whose stories have had the most impact on my life...... those patients living with metastatic disease.  I live with a certain amount of fear about mets despite the fact that I was as aggressive as I could be in my treatment choices.

When an A Game Surgeon sits across from you saying, “I’m confused,” or “You definitely have a guardian angel,” or “We NEVER pick up invasive lobular cancer at such an early stage,” and again, “I’m confused” for the fifth or sixth time in a three minute period, it feels bizarre.  In that moment, should I feel gratitude over the guardian angel or concern that I am hearing a prominent surgeon admitting confusion?  Talk about a fight inside my head?  That particular brain fight was worse than any CB fight I’ve had to date.

I’m pretty sure any cancer patient will agree that the only fear more gripping than hearing the word “recurrence” is the terror associated with the word “metastasized.”  I say this with complete empathy to anyone living with mets who may be reading this, but damn it: Why is it necessary to use The Big Words?

Does it sound better?  Is it less frightening?  Having not walked in those shoes, I can’t answer those questions.  It just seems to me like it’s more the “repackaging” of the diagnosis to minimize the effect (and the affect... and yes, both words fit, either one is grammatically correct and both make a different, yet horrifying point).  It’s semantics.  Bottom line.  Recurrence=The Cancer is Back.  Metastasized=It Spread.  Both awful.  But not equal in their awfulness.


You can skip this part, but you can NOT bypass the text after these clearly marked paragraphs.... 

As the tenth anniversary of September 11 approaches, I remember those awful feelings.  There were awful feelings and there were terrifying feelings and a whole mess of "in between" feelings.  We are about to be inundated from every form of media.  We will share in the respectful ways to honor those who were killed, acknowledge the heroics of those who risked their own lives to save others, follow the survivors, seek out the loved ones whose lives were changed in a single moment in time and check in on the children-some of whom were born after the deaths of their dads.  I expect I will see images of burning towers, plumes of smoke rising from The Pentagon and a debris littered field in Pennsylvania.  I expect I will see these images over and over and OVER again.  It is important that we never forget and it is important that we acknowledge those whose lives were forever changed ten years ago.

Yes, this was an unprecedented moment in the history of our country.  I live close enough to have seen the smoke cloud wafting across what may have been the bluest, most cloudless sky I’ve ever seen in New York.  I live close enough to have walked out of my door two days later questioning why my eyes were immediately irritated and began burning within moments.  It took time for me to realize what was burning my eyes and assaulting my sense of smell were the fumes emanating from Ground Zero.  The wind was blowing everything right into my zip code.  A zip code where lives were lost, widows were made and children, instantly, became members of the statistical, “single parent family.” 

It’s heart wrenching.  It’s larger than life.  In the days ahead, I expect television coverage to increase dramatically.  I expect it will build to a 24/7 multi-channel frenzy of images.  Planes flying on angles to make maximum impact, the screen filled with black clouds and white dust.  Buildings pancaked to the ground, first one, then the other.  People running through the streets of lower Manhattan attempting to outrun a dust cloud that appeared to be the ash of a volcanic eruption.  And we will all remember.  And yes, we should.  Attention must be paid.

Almost 3,000 lives were lost and that number has been adjusted a handful of times to include those who died years later as a direct result of the attack and its impact on their health.  We will never forget 9/11 yet we seem to have allowed all of the Stage IV breast cancer patients to fall into some sort of black hole.  The Stage IV breast cancer patients horrify us in the land of “Rah Rah, let’s feel great because we are wearing a pink ribbon of hope.”

If I am being analogous to 9/11, the metavivors are the jumpers.  Little if any coverage will be devoted to the 9/11 victims who did not wait for their demise when they realized rescue was not likely.  They took control of their destiny.  They held hands and leaped to their deaths.  They jumped solo.  There are pictures.  Most are hidden.  It’s too horrifying to watch.  MANY jumped.

I read in a novel (back when I could still read a novel) a line that captured the way the media handled the jumpers.  It was a Jay McInerney novel and in his observation, the news media had some sort of self imposed moratorium on reporting on the jumpers.  One small sentence and it was the single most powerful line in the book.  THAT spoke to me. 

Similarly, it’s become a black mark in the sea of pink to admit we have come SO far in breast cancer research but have made little or no progress with metastatic disease.  Like many of the fire fighters who lost their brothers on 9/11, I suffer survivor guilt for my sisters.  THIS year, approximately 40,000 wo(men) are expected to die of breast cancer.  I am not shunning other diseases or other cancers.  I am merely trying to find a voice for the forgotten in a disease that has touched my life.

I have been running from the disease since 1987 when my mom was diagnosed and she survived a pretty lousy prognosis only to face down (and smack down) round two some twenty years later.  Selfishly, I don’t want to face down round two.  With no breast tissue left, my round two......I can't even go there in my mind.  Protectively, I want the race to stop with me.  I don’t want my daughter constantly looking over her shoulder. 

I merely visit fear during the course of certain moments in my life as a “Stage 1 Survivor.” There are “Metavivors” who live in terror every day of their lives.  I read their blogs.  The percentage of breast cancer research dollars directed toward Metastatic Breast Cancer is in the single digits. Those living with “mets” are acutely aware of the where they stand and are rightfully enraged as we enter the Sea of Pink that will soon surround the globe.  Billions of dollars will be thown on anything pink.  Few will make their way into research that will save lives.  Their lives.  That is wrong.

As we pause to remember and pay respects to the lives lost on September 11, 2001, may we remember, too, our military around the world, those who have given their lives to protect our freedom and those who are still in harms way.  And, NOT ONLY as October approaches, BUT EVERY DAY, let’s remember those of our sisters whose treatment advances are so slight.  They are still in the medical dark ages in comparison to the statistical majority.

On October 13, the single day in the month designated for the Metavivors, AND ON EVERY OTHER DAY OF THE YEAR, let our voices rise as one in solidarity.

Elizabeth Edwards is quoted as saying, “I think if we would just fund breast cancer research or cancer research in general, I just need the medicine to catch up to me. The medicine is going to catch up to this condition – it's just a question of when.”

We know medical knowledge is growing at warp speed.  We need to see EE’s hope for medicine become a reality.  Donate to research, volunteer to walk, SEE if you are eligible for a clinical study, JOIN the Army of Women, buy pink if it makes you feel good** just be very noisy about whatever you do.  The lives of 40,000 American wo(men)  are counting on us.  We can’t let them down.


Post script from the rewrite in May, 2012.  Clearly, I've changed as I've learned and with my newly gained knowledge, my feelings have shifted.


**Buy pink, but buy it responsibly.  Know how much money is being donated on your pink purchase and KNOW where they are donating those pink dollars on the items you may decide to purchase.  Demand transparency.  Ford just announced a new partnership with the Dr Susan Love Research Foundation.  You can read about it on Dr Love's blog.  They are donating 100% of the net proceeds to one of four charities.  No cap.  When you purchase, you choose where the funds should go.  No profit being made on our disease, the sales are not adding to the bottom line.  You choose the organization from the four that Ford partnered with on this project.  I know DSLRF is a worthy recipient and uses donor dollars properly.  More on this partnership when my brain returns to its rightful location inside my skull.  On the surface, it appears this passes my litmus test which consists of three primary questions.  Yes, YES..... I know there are other issues to discuss.... as I said, when my brain returns to my skull.  

Tuesday, May 22, 2012

WHAT'S IN A WORD ?

Words matter.

Words can send our spirits soaring.  Words can inspire us.  Words can teach us.  Words can inform us.

Words can hurt us.  Words can damage us.  Words can mislead us. 

Words can bring a smile to our faces.  Words can bring a tear to our eyes.

Words.

If you are blasting social media, specifically twitter, with a barrage of tweets, use those words with care.  To condense a thought to 140 characters including spaces is quite a challenge.  I get it.  But the “canned tweets” with the questionable words?  They are TOO frequent.  They are repetitive.  They are damn annoying.

I’m being petty.  I can simply stop following.  OR, I can do deploy some sort of “zip it” feature where I will not see the tweets.  OR, I can simply leave things alone and stop taking everything so personally.

But then, I come back to WORDS.

I believe any organization that wishes to maintain its reputation and be held in the highest regard by those whom they seek to assist has a responsibility to understand that words matter.  Particularly in a forum where words are the only way to convey the message.  There are no vocal inflections.  There are no hand gestures.  There are no facial expressions.  There are only words.

The words should not offend.  The words should be factual.  If words offend, they hurt us.  If words are not clear or factual, they damage us or at the very least, they mislead us.

Words suggesting food habits can prevent cancer are damaging.  Words suggesting a particular food might help prevent breast cancer are misleading.  Words about the history of the pink ribbon may be factually inaccurate as a historical accounting should start at the very beginning.  It's possible the beginning of the pink ribbon history is omitted.

Words about posting our bra color on Facebook can bring tears to many eyes when you listen to the words of a young mommy, @whymommy, Susan Neibur, who died earlier this year.  Awareness is so 1995.  We don't need awareness.  We need action.  In 2012, we NEED action.

Sometimes, the words just don’t make any sense. 

Prevent breast cancer with early detection?

I’m sorry.  Those words need to be reworded.  If breast cancer is detected early, you already have breast cancer.  In other words, nothing was prevented.

Until there is a cure, prevention is key?

Until there is a cure, we got nothing.  There is no way to prevent breast cancer.

I'm not being overly sensitive.  I am being acutely aware.  Aware when things are slightly askew.  Ignoring minor inaccuracies is no longer acceptable.  It keeps us stuck with the status quo.  The status quo has gotten us nowhere.  The status quo has us doing little more than marching in place.  

Please take special care with words.  Please use words responsibly.  When all you have are your words and your words are representing you, those words that are misleading others may be the very words that harm you or damage your reputation.

Words matter.  

Monday, May 21, 2012

IN HELPING OURSELVES -- WE HELP OTHERS

It was not my intention to have three consecutive posts with embedded videos but I suppose if I harken back to some of my earliest entries, I recall cracking jokes about things happening in threes.  In keeping with that theme, or in other words, The Beat Goes On....... you will find a video at the bottom of this post.

When I was in Washington for NBCC Advocacy Summit, in one of those serendipitous "life episodes" I received an invitation for a luncheon being held by the Cancer Support Community.  You know how the saying goes, "timing is everything?"  In this case, not only was the timing perfect, the location was ideal.  I was already scheduled to be in the very building where this luncheon was being held.  The topic was perfect.  

"Meeting The Needs of The Whole Patient in Cancer Care"

In addition to an outstanding panel of speakers and visits from a number of congressional representatives, it was a delight to meet the president and CEO of CSC, Kim Thiboldeaux, whose passion for her work is immediately obvious from that first second you meet her.  She was at the door personally greeting each of us as we arrived.  Every speaker was exceptional but no one touched me more than Janice Paul, an ovarian cancer survivor whose story had me blinking back tears and swallowing that lump in my throat more than once during her time at the podium.

I'm not sure I understand when OR how I've morphed into a bundle of blubbering emotions, but most definitely, I have.  It certainly seems as though I've shed far more tears in the years post active treatment than I did in the months prior.  With the exception of the day I got that letter when I wailed like a baby for two solid hours, I don't remember shedding many tears in the months leading up to my diagnosis, the day of my diagnosis, the night before my surgery, the morning after my surgery, two days before chemo when I went to get a haircut (figured the next time I'd be doing anything with my hair it would involve a buzzer--which, for what it's worth did NOT happen as I did NOT lose my hair because I had That Fraud Chemo.... Kept my hair, Lost my brain, but the hair, oh the hair... that was of primary importance).

I suppose when I was actually In Those Moments, it was necessary for me to shelve my emotions so I could be an empowered patient.  It was important for me to be present.  I simply had to allow my brain to rule the situation.  My heart had no place in this maze.  I couldn't make decisions clouded by emotions.  I know I'm good in a crisis.  Mine or someone else's..... it's after the crisis that I reflect back and just fall to pieces.  And when I say fall to pieces, I'm talking walking around completely dazed, unable to function, almost catatonic.  No kidding.  Crisis fallout.  Perhaps also known as Post Traumatic Stress Disorder?

I'm five years post chemotherapy.  My gummies just celebrated their fifth birthday nestled inside my body where my breasts once were.  My ovaries are in a medical waste landfill somewhere.  My brain makes a guest appearance every so often.  This can be more than a bit troubling most of the time.  Sometimes, however, I'm pleasantly surprised.  On occasion, I'm elated.  The elation is usually the result of something I COMPLETELY forgot about......

This falls under the elation category.  I tend to get lost on the internet.  I follow one link to the next and sometimes, I crash into something great.  This is great.  Why?  For starters, it's the Cabbage Patch Doll syndrome.  Too young?  OK.  It's Tickle Me Elmo.  Still don't get it?  OK. O.KAY.  I like being in on the ground floor.  And, apparently, I was one of the 1043 initial participants in The Breast Cancer M.A.P. Project.  Mind Affects the Physical.  This past October, the inaugural report was published.

This is an ongoing project and it's one that I am encouraging anyone who is willing to share their experience to do so by joining the registry.  This initiative is listed in ClinicalTrials.gov  and it's also included on BreastCancerTrials.org in section on their site dedicated to web based studies.  In other words, it's not just some group looking for random information. Cancer Support Community has enlisted some of the brightest minds to find the best possible ways to support us.  All of us, the breast cancer club hoppers.

Poke around the website.  There's lots of information and there are plenty of ways to seek support.  There are online groups in addition to discussion boards.  I participate in a weekly session which lasts 90 minutes.  My group is not exclusive to breast cancer.  It's facilitated by a social worker who is spectacular.  They are doing some great things at CSC and WE can help make it better.

How?

Join the registry.  These words, straight from that inaugural report, let's just cue the emotions.  My answers helped provide the first glimpse into the minds, hearts and souls of what it means to have breast cancer, to live with breast cancer and to fly without a net when active treatment is complete if we are fortunate enough to exist in the land of NED.

Be a part of something so much larger than yourself......  This is WHO you are when you choose to participate....... This is HOW you are viewed by those who realize Cancer Ain't Easy and it sure Ain't for the Faint of Heart.  

"This project, the first of its kind, is a collection of more than 1,000 survivor voices who shared their deeply personal emotional, physical and social experiences with breast cancer . These survivors are setting the framework for better care by arming researchers, policy makers, advocates and others in the cancer community with insights into the impact of breast cancer from diagnosis throughout the survivorship continuum . We owe an enormous debt of gratitude to these registry members who summoned the courage, commitment and candor to answer our call-to-action and share insights that have the potential to change the course of breast cancer survivorship."

Before I roll tape here...... Just want to mention if you are in the Chicago area, stop by Gilda's Club on May 31st and meet Kim at the CSC book launch, "Reclaiming Your Life After Diagnosis" (and no, this is not a paid advertisement!!!!  Nor was it coerced.... although, I'm guessing if you are a regular reader of this blog, you might already suspect I can't be bought.... Either I believe something is great... or not... and I do think Kim is dynamic.  And I love what they are doing at Cancer Support Community...... So that no one faces cancer alone 

The video may take you to the You Tube page.  Or, it may not work at all... In case.....This is the You Tube Link.  FYI, I love the voice of the singer..... and I really do love the song, too.

Friday, May 18, 2012

SNARK --- ITALIAN STYLE .....

I am delighted to share some snark from the other side of the Atlantic.  Below, is a post written by a new Italian friend. We "met" on twitter.  She posted a You Tube video.  I saw it and I responded.  We began communicating.  Her English is impeccable.  My Italian is NOT.  In our first email, I knew she would fit right in!

"I'm against the pink crap as well as you and I'd like to promote a new approach to research whose agenda should be dictated by women and researchers at the same time.......  Are you in touch with the people of "Pink Ribbons Inc?"  It would be great to bring it to Europe.  There's a great, cold silence here and I've decided to break it!"

Grazia (Grace) is presently 32 years old.  She's Italian and currently lives in the UK.  She was 30 years old when she was diagnosed with breast cancer in November of 2010.  She writes.  The piece below can be found online here.  Grazia was kind enough to translate it into English to be reprinted here for all of us.

The You Tube promotional video is at the bottom of the post.  Even though it is in Italian, as they say, a picture is worth a thousand words.  Trust me, you'll get the picture.

Without further adieu, here's Grazia in her own words with very few grammatical adjustments from me.  I didn't want to lose the snark......


GOT BREAST CANCER??  SWEEP IT AWAY WITH VILEDA.


 Got breast cancer? Are you a woman? You are at risk to get the disease considering that nowadays in Italy one in eight women will develop the disease throughout her lifetime? Vileda (O Cedar in the US) has what you need! Yes, you’ve got it right!  Vileda, the mop company. Today, in they year 2012, if you buy bucket, brush and mop, all in pink for the occasion, you support cancer research. What research? The research funded by Susan G. Komen Italy, the first European affiliate of the more reknowned US organization Susan G Komen for the Cure. The latter has recently been in the eye of the storm.  In order to promote its campaign against breast cancer, Komen is not ashamed to accept the sponsorship of fast food chains or  the food and cosmetic industry, even those whose products contain chemicals suspected to be related to breast cancer. The “cause”, the so called pink-ribbon culture promoted by Komen, is receiving increasingly strong criticism from many people.  There are now thousands of products sold not only in the US, but also in Europe and in Italy getting restyled to promote the “battle” against breast cancer. All the products turn pink, the colour symbolizing feminity, at least in the Western world, pink... representing a tamed female who is not expected to ask too many questions. Questions like:


“Why are the cases of breast cancer growing?” 
“Why are a growing number of young women getting the disease?”
“Why, after decades of research, we still do not know the causes of breast cancer?”

Since February 2000, Komen is in Italy too and every year it organizes the “Race for the Cure”, whose aim – as one can read on the website – is to “express solidarity among women faced with breast cancer and to raise public awareness on the importance of prevention”. The race(s), however, are an occasion for promoting various goods to women, the manufacturers of which support the event. This year Vileda is among the sponsors and introduced its “Pink Collection” which includes Super Mocho 3 Action, the gloves Sensitive, the brush viStyle and the cotton and microfiber mop. All strictly pink. All strictly for women, whether or not they have breast cancer, women who will be happy to buy and use them to keep their houses clean– the place whose domain has been assigned to them by nature –.  And even if they DO get breast cancer, they will not feel lonely. To keep them company there will be millions of other women currently developing the disease in increasing numbers in Italy and in the world, there will be Komen who will give them the opportunity to join a race once a year. Oh yes, there will be the pink Super Mocho 3 Action, their faithful ally, that, like a magic wand, will fight breast cancer off forever. And they all lived happily ever after.

As I was finishing up this piece to post, I received an email from Grazia..... It said:

"Komen Italia has banned me from its Facebook page. I cannot post on their wall. This is because of the article, but also because of a post I wrote on the wall of Rosanna Banfi, an Italian TV actress who got breast cancer and is now a spokesperson for Komen. Some women agreed with what I wrote. The actress has not banned me so far."

It brings Grazia's own words alive in describing the use of pink as a representation of a "tamed female who is not expected to ask too many questions."  I loved that line in the post and didn't want to add commentary but then I got this email.  And it fits.  


AND NOW..... LET'S ROLL THE TAPE....


Apparently, in Italy, it's either sex or it's cleaning.  (Chill before you yell, I'm ITALIAN AMERICAN and this is not entirely inaccurate....)  Unless you are someone like Grazia, making noise, looking to change things.....   Just one question:  Can someone shed some light on the nun and the priest?  I'm not sure I get that.

Race for the Cure, Rome.  This Sunday.  Bari, Next Sunday.  The remaining two, just in time for Pinktober.  I wonder if they will get the Pope to turn the Vatican pink?  Perhaps the cardinals can be flamingos for a month??  Just throwin out a few suggestions...... Anyone up for a friendly wager?


Final thought.... Be sure to check out Barbara Brenner's blog.  She was the head of Breast Cancer Action and remains VERY outspoken and exceptionally eloquent.  She has what I'd like to call a "starring role" in Pink Ribbons Inc!








The CYA portion of the blog including a link to the Vileda page .....

Here's Vileda via Google Translate.

Sustainability in the post, we mentioned our partnership with Susan G. Komen Italy. It's time to give some more details.

Komen Italy is a non-profit volunteer-based, active since 2000 in fighting breast cancer. This is the first European affiliate of the "Susan G. Komen for the Cure "in Dallas, the largest institution in the world active in this field for 30 years. Komen is committed to spreading the "Pink Ribbon", the universal symbol of the fight against breast cancer, its activities are: prevention, early detection, help women who face the disease, improve quality of care and support new projects through fundraising.

Support important activities, such as Komen, reflects our policy of sustainability, we are sensitive to these issues and, therefore, we initiated a multi-year partnership to support the initiatives of the association. From this partnership was born "Project Pink" initiative, which aims to raise awareness on the prevention and raise funds for the fight against cancer.

Of this project are part of the product "Pink Line", distinguished by color and by the special Komen ribbon:

• Sensitive Gloves: Gloves are ideal for the most delicate because they offer the highest sensitivity on palm;

• Broom ViStyle: the broom multifunction "Three is" for 3 utlizzi different. Made with 80% recycled material.

Choose Pink Line products is to make a choice in favor of women.

Soon will start the 2012 edition of the Race for the Cure. We'll provide all the details below to find out how to attend the event.
 
And an apparent press release, also via Google Translate....
May

Race for the Cure 2012: Run with us against breast cancer!
Our partnership with Komen Italy does not stop at the line of products Rosa, but continues with participation in Race for the Cure, an event organized by the Susan G. Komen Italy consisting of a run of 5 km, to demonstrate solidarity with the women who face breast cancer and raise awareness on the importance of prevention.

The event, open to all, is characterized by the presence of "Ladies in Pink", women who have personally dealt with breast cancer and to demonstrate the positive way of dealing with the illness, deliberately choose to become visible when wearing a shirt and a pink hat.

The first Race for the Cure was organized in 1982 in the United States, and since then the event involves millions of people in different cities around the world. In Italy, the first race was held in Rome in 2000 and, given the enormous success, the event was staged in other Italian cities.

This year, consists of a three-day health, wellness and sport, culminating in the famous race and walk Sunday morning. Here is the schedule of the four stages of 2012:

• From 18 to 20 May in Rome

• From May 25 to 27 in Bari

• From 28 to 30 September in Bologna

• From 5 to 7 October in Naples

For more information and to register, vai www.raceforthecure.it the site, select the menu "The Race for the Cure", choose one of the stages and, after entering the page, click on "Subscribe" button.


In addition to the race of Rome, we are planning to involve all our Facebook fan page Vileda: You can, in fact, join groups as a real team. For this, we would like to collect all our fans in one mega team and race together against breast cancer!

Want to join us? Then go to www.facebook.com / ViledaItalia and put "like". You will be with the other, an event that combines sport, fun, emotion and social commitment, and support us with Komen in its activities in favor of women. We count on you!




Thursday, May 17, 2012

LOVE LEVELS THE FIELD - WE ARE ALL EQUAL

She's witty.  She's brilliant.  She's determined. She gets it.  And most importantly?  She RANTS (by her own admission!).

This video is a talk given by Dr. Susan Love.  Excellent points are made about how WE are part of a team.    We, as patients, have good ideas.  We can be active research participants.  We can and should be part of the collaborative effort.

I ranted enough yesterday...... In fact, I ranted myself right into an eye twitch.  Have you any idea how difficult it is to read or write with a twitchy eye?  I've wanted to share this video since it hit Dr. Love's Facebook page.  No time like the present.  Besides, she deserves an audience today.  Yesterday, Army of Women closed out another study.  Researcher has all the necessary participants.  If we work together, we can get things done.

Speaking of which...if you missed Monday's post, please take a peek.  It's too late to vote for METAvivor so the beginning of the post is no longer relevant but it's not too late to sign the petition or to encourage your representative to sign the bill to Accelerate the End of Breast Cancer.  Deadline 2020.  All of this will take about two minutes of your time.  It's important.  And I'll tweet out to anyone whose representative is missing from the list.  I had success with that one last signature from NYS and I'm happy to report, New York now has 100% support.  I'm not taking credit for that last signature but it wasn't there before I hit that twitter feed and then, it was.  You can decide.......

And one last thing..... If you live in the San Francisco area, Breast Cancer Action is screening Pink Ribbons Inc on May 31st. Here's the trailer.....  for those who think I'm too pissed off about pink..... have a listen... Then, come talk to me....





And now, rounding out the day in videos, Dr. Susan Love (who is in that trailer for PRI) educating an audience and as she said on Facebook....
"My rant regarding how researchers think of patients as "other" to be studied rather than collaborators with good ideas!"   -- Dr. Susan Love