SCARLETT'S LETTER

I'm pretty well done, possibly for the remainder of the week.  Yesterday sapped a ton of energy out of me.  My To Do list is finally organized in one place.  The problem?  I keep adding to the list and NOT ONE THING is getting crossed off the list. Today is accounting hell day.  W-2's must be mailed.  Payroll tax returns must be filed.  Not ONE thing is done.  Once again, and possibly (hopefully, better be) the last time I shall ever stare down the barrel of this deadline.  EVER.  And, it's not because I expect to be more organized.  Au contraire, mon ami. I already know I can't climb out of this rabbit hole. I simply have to finish up 2011 and step aside.  I mess up numbers, I blow deadlines, I can't deal with the intricacies of determining "this period of time fraction of cents adjustments."

What was second nature for years and years now makes as much sense as words written in Aramaic on parchment scrolls. Today is the day. Today MUST be the day.  And if it isn't, when Thursday rolls around, Groundhog Day All Over Again. And it will be highly personal and it will extend far beyond Punxsutawney Phil and that stupid hole and the his dumb shadow. And while I'm at it?  It better be cloudy as all hell.  AND, PP better come out of his hole and hang out with the party crowd and spring better arrive early.  Just Sayin......

I am morphing out of my bitch blogger cancer rebel mode and summoning my inner Scarlett O'Hara.  I can relate totally.... And with a zig zag of thoughts like these, I'm going with:  Miss Scarlett was NOT Gone With The Wind....She simply had a good old fashioned dose of chemobrain:

"Oh, I can't think about this now!  I'll go crazy if I do!  I'll think about it tomorrow.  But I MUST think about it.  I MUST THINK about it.  What is there to do?  What is there that matters?"

Let's make this an interactive game....But before we do that, I dare you... double dare you, I dare you to the ten million zillion power to convince me that doesn't sound like a chemofriedbrain?  

Ok... if you agree, I'll let you play along..... The hell with Tara.  Tara doesn't exactly exude this homey feeling....We are replacing Tara.  Insert any comfy cozy place in your life... mine would be a trendy vodka joint....possibly the Rooftop at the Standard Hotel... I really did like the tone and the mood, oh yes, and the VIEW.  I had a great time at the Standard.  Didn't I?  Yes, I surely did.  I think.  

Ok...so the Standard Hotel is my comfy cozy (and trendy) place.... pick yours so we can continue.....

Of all the vodka joints, in all the towns, in all the world, I'll walk right in.... and I'll be home!  With a vodka martini.  Home! Feet up... work done.... things getting ticked off my To Do list.... the important things....should the martini be shaken or stirred?  Stuff like that..... The hell with that other stuff... that paperwork is making my brain spin......  Join me as I shout from my Rooftop: 

"After All, Tomorrow is another day!!"

That is my brain in fried egg mode.  I'm bubbling all over the place.....

Ok.... AM... earth to AM... calling AM..... Not only is the thing misquoted, it appears you completely twisted up two classics and mangled them into one big giant mess.  

AM to AM.... Yup... that's exactly what I did and you know what..... don't start sniveling about where you shall go and what you should do..... You belong in your office.  Hitting the deadlines.


Wait!  What are you saying?  The paperwork is definitely going to be late???

SER-I-OUS-LY???????


Yes, Ser-i-ous-ly and you know what......

Frankly my dear, I DON'T GIVE A DAMN.  

THE LINGO....

Word Matter.  It's just that simple.  Tone of voice, decibel level, body language.  Those matter, too.  But mostly, for the purpose of the conversation that is currently taking place inside my head, it's all about the words.

War metaphors are big when discussing disease.  Some people find them helpful and I say, "Whatever gets you through.... go for it."  Me?  Not so much.  I don't recall saying I was battling cancer when I was in active treatment.  I don't recall feeling much like a warrior, either.  But, I know plenty of people who find comfort using those words.  I can absolutely understand how it could be empowering, could provide both strength and comfort.  

When someone succumbs to the disease, the death notices seem to announce the passing using some sort of verbiage including, but most definitely not limited to "long, courageous, valiant battle."  When a death notice is being written, I think that's generally the opening line.  It's one phrase.  Followed by the people with whom the deceased shared their life..... Sometimes, there is a little information about their activities and accomplishments.

The notices are obviously written by those left behind.  Those who watched the suffering in the prior weeks and months. They are heartbroken as they spend every waking moment praying for a miracle and desperately looking for ways to obliterate the pain.  But there is no miracle and only death obliterates the pain.  And now the broken hearts are shattered into millions of pieces.

How about honoring the "battle" with a little description for the rest of the world.

Her smile remained bright even as the disease progressed throughout her body.  For several months, she lived in constant pain yet she always managed to be the bravest one in the room.  Her greatest fear was that she would not be here to see her daughter in a prom dress, or graduate from school or dance at her wedding or cradle her grandchild safely within her arms.  Sadly, her fears were realized when she died of breast cancer despite the best treatment that medicine had to offer.

That's far more realistic than "after a courageous battle with breast cancer."

Christopher Hitchens whose name may be familiar to some but not to most was interviewed by Anderson Cooper before he died of cancer in December.  While he will continue to have many critics, even posthumously, because of his political and atheist views, he was a brilliant writer.  Likened to Thomas Paine and George Orwell, his words pretty much sum it up for me:

"You're watching poison go into your arm.  People saying you should be struggling (against), battling cancer.  You're not battling it.  You couldn't be living a more passive moment than that.  You feel as if you're drowning in powerlessness."


You may have been an atheist, Mr. Hitchens, but those words?  All I can say is:  AMEN, Brother,  A M E N.  

A LIFETIME OF FAILURES

Tears are flowing freely.  A friend of a friend.  The girl who died last night was the friend of a friend.  She was someone in whose company I had been many times over the past twenty years.  She was always more than an acquaintance but it wasn't until I got The Phone Call, "I am really uncomfortable asking you this BUT...."  And I knew.  And I said, "Someone has breast cancer."  It was less than two years ago.  And we all went out for dinner.  She was on the runaway train and that was when the bonds of our friendship were sealed.  She went through surgery, chemo.... Post treatment scans clean at the three month mark and clean again at the six month mark.

NED.  NO EVIDENCE OF DISEASE.

And last spring, it spread to a bone, one spot on ONE bone.   And in eight months, she is gone.  It was aggressive and it didn't respond to any cocktail of drugs.  One round in a clinical trial and the brain mets were found.  When she had trouble breathing, they drained the fluid from her lungs.  Scans then revealed new spots on her bones and in her liver.  WHILE on all sorts of chemo drugs. In three months when they were attempting to address one spot on one bone, it metastasized.... No screw that word.  It SPREAD.  It spread to every single place where breast cancer likes to go.

She was 39 years old.  Her daughter is 7 or 8.  Her significant other was amazing.  He found every possible study, he spoke to her doctors when she could not, he took care of her.

Last evening, as this horrific scene was unfolding in a hospital, I went to honor the memory of another young woman. Many of the bloggers and the twitter/facebook gang know about Angelo Merendino and his photographic journal of the battle they did not choose.  His wife, Jen, died last month.  His photos were on display and they are beautiful and bittersweet......  the photos that always got me were those I could relate to best.  I know those gowns. I know those rooms.  I recognize the curtains and the equipment.  We were both treated at the same hospital.  This triptic is powerful.  Almost life size in the exhibit, surrounded by many other photos, all in black and white......

And then, there is Susan.  Another brilliant young woman... Not yet 40 years old with two small children and a devoted husband.  Her most recent blog post is exceptionally poignant.  There are 500 comments under that post.  There are people around the entire globe praying for a miracle and understanding the reality.

The text I got an hour before my friend died?  "She is out of it now.  We are all just waiting.  So heartbreaking.  (They are) saying another day or so."

It's tragic and it's horrific.  These three women deserved better.  We had an entire lifetime to do better for them.  Their lifetimes.  We have failed and we have failed horribly.

Breast cancer's dirty little secret.  Women don't die of breast cancer any more.  Really??  I beg to differ.  And we shouldn't be watching anything like this unfold.  We shouldn't be hoping for miracles.  We should be demanding a cure.  We must do better.  They deserved better.  Their loved ones deserved better.  Failure can no longer be an option.

INDY ROCKS!

INDY ROCKS because, well, ummmm.... I live in NY and I like sports and I love the thought I may be a verb one day like TeBowie and THE NY GIANTS are in the Super Bowl.  It's a funner (and yes, I really know that isn't a word, but I like it) Super Bowl party when there is a home town team in the game.  Granted, the NY GIANTS stadium is in NEW JERSEY... but whatever.....

That's not the realest reason why Indy ROCKS... (realest? see funner above)

It's all about what is going on this weekend.  In INDY.  One Week Before The Game....

For Me, this is pretty high on the wow factor scale......Thank you for Stepping Up!!!! 

Presently, there are over 700 women registered to donate tissue at the Komen tissue bank!  Hopefully at least 25 of them will fit the study criteria below so Army of Women can fill this study AND if all of the donors are not members of the Army, I hope they will be grabbing their phones and texting to sign up, too.

Straight from the NCI on January 24th...... Extra Extra Read All About It!

I am positively floored.  SEVEN HUNDRED WOMEN!!!  It truly is worth reading that link from Cancer.gov website.  No one expected a "healthy women tissue bank" would ever work to begin with and this Super Bowl drive was envisioned to attract one hundred donors.  FLOORED.  FLOORED. AND Kudos to everyone in Indy who registered and to those who got the word out about the tissue drive.  This is what is looks like when people want to see change.  This is what ACTION looks like.   

THIS WAS MY ORIGINAL POST ON JANUARY 6TH

(editors note-ummmm, AM seriously? EDITOR?  ....    Apparently, this is the THIRD go round for me in posting this study..... If you don't know why THIRD is all in CAPS, you might want to go back to yesterday.....I'll save you from reading the whole damn post... scroll right to paragraph six.....Just sayin'  I mean if you can't stand the mystery of the threes):

OK... Enough... On January 6th, I posted this:

Less than a month ago, I sent out information regarding the Shift Work study.  This study is understandably a difficult one to fill.  The researchers made an adjustment to the study criteria and I was notified of this change in a Call To Action email update.

The adjustments are noted below and the link to the sign up page is here.  If you know someone, pass it on.  Nothing is going to happen, nothing is going to change..... UNLESS we have the willing volunteers.  Anyone?

Please note:  If you already RSVP'd online via the Army of Women invitation, you will have to reply differently.  The information about how to "reapply" is in the final paragraph.

Oh... and I also read some great news about another Army of Women study.  Yesterday, the study was filled.  This works if we all work together.  Let's close this one, too.  Are there 23 women out there who fit the new criteria?  Make a difference. If you qualify.... go ahead... MAKE a difference.  That feeling, I can assure you, is like nothing you will ever experience.

Happy Friday.  Happy Weekend.

Back in real time...clearly it's NOT Friday... wishful thinking?  But.... to get back to that three stuff..... If we can make this happen, I do believe it will be the THIRD study closed out by Army of Women within the past couple (three?) of weeks.  If you already went back to yesterday to check out the whole thing with the threes.....  Personally, I like the last line.  It fits.... and I'll just reprint it here (with necessary adjustments) to save you the annoyance of bouncing between the pages if you even GOT this far:

Step aside, Wizard, you are standing in the way of progress.  The ladies have some work to do!!!

Dear AnneMarie, There is research demonstrating that working the night shift increases a woman's breast cancer risk. Researchers from Virginia Polytechnic Institute and State University want to figure out why by studying breast tissue samples from women who have NOT had breast cancer. Their goal is to see if there are differences in the cells in the breast tissue of women who work day shifts and those who work night shifts. We have recruited for this study in the past but we still need 23 more night-shift workers to sign up so we can close recruitment. We are now enrolling women between 30-65 years old who have worked night shifts for at least 5 consecutive years at some point in their life and we are now interested in "rotating night-shift workers", those who work at least three nights per month, in addition to day and evening hours. If you're a night-shift worker who didn't quite fit the criteria before, please take another look -- you may now be eligible! If you're not a night-shift worker but know someone who is, please forward the Call to Action to them!

What's the study about? The research team is studying breast tissue samples from women who have not had breast cancer, who have worked either day or night shifts for at least five consecutive years to better understand how wake/sleep cycle disruptions may increase breast cancer risk.The research team has enrolled enough day-shift workers but still needs night-shift workers! What's involved? If you join the Shift Work and Breast Cancer Risk Study you will be contacted by phone to answer questions about your health and work history. If you are eligible for the study and decide to participate, you will be asked to complete a consent form and a questionnaire about your work history, your shift work, your sleep patterns, factors that contribute to stress in your life, your job satisfaction, family medical history, and additional background information. You will receive and return the materials in the mail (at no cost to you). After reviewing the completed questionnaires, the research team will choose the women who they will ask to provide the breast tissue samples. To collect the tissue samples, the researchers and the Army of Women are collaborating with the Susan G. Komen for the Cure Tissue Bank at the Indiana University Simon Cancer Center in Indianapolis. If you are chosen to participate and you choose to provide a breast tissue sample, you will be asked to attend a tissue collection event at the Komen Tissue Bank on January 28 or 29, 2012, in Indianapolis, whichever is most convenient for you. In addition to donating tissue for this study, you will also be asked to donate tissue and a blood sample to be included in the Komen Tissue Bank for future studies not related to this specific study. The Komen Tissue Bank obtains and stores specimens (tissue, blood, urine, or saliva) for researchers to use in their breast cancer studies. Just as the Army of Women serves as a resource for researchers looking for women, the Komen Tissue Bank is a resource for any researcher looking for healthy tissue sample. When you arrive at the Komen Tissue Bank, you will be asked to complete a separate Consent Form document and questionnaire for the Komen Tissue Bank. A breast surgeon will perform approximately 4 core breast biopsies, removing cells from your breast with a needle under local anesthesia. This is an outpatient procedure and usually takes about 30 minutes. One of the tissue samples will be sent to Dr. Finkielstein for her analyses related to this study and the remaining samples will be stored at the Komen Tissue Bank. You will also be asked to donate a blood sample for the Komen Tissue Bank. Please note: In order to participate in this study, you will need to agree to provide breast tissue samples that will be shared between this study and the Komen Tissue Bank. You can learn more about the Komen Tissue Bank click here or follow this link: https://komentissuebank.iu.edu The researchers need to enroll approximately 23 more night-shift workers. Who is conducting the study? Carla Finkielstein, PhD, Virginia Polytechnic Institute and State University, Blacksburg, Virginia Where? IU Simon Cancer Center Komen Tissue Bank, Indianapolis, IN Who can participate? You can join the Shift Work and Breast Cancer Risk Study if you match ALL of these MAIN categories: - You are a woman between 30-65 years old - You have never been diagnosed with breast cancer (it is OK if you have a history of other cancers) - You do not have the BRCA1 or BRCA2 mutation (if known; if you do not know, you can still participate in the study) - You have worked night shifts for at least 5 consecutive years at some point in your life. Women who are/were "rotating night-shift workers" -- women who worked at least three nights per month, in addition to day and evening hours -- can also sign up. - You are able to go to the Susan G. Komen for the Cure Tissue Bank at the IU Simon Cancer Center in Indianapolis, IN, on January 28 or 29, 2012, for the core biopsy procedure - You have never had a breast reduction or breast implants - You are NOT allergic to local anesthetics (numbing medicine) - You are NOT receiving a therapeutic blood thinner (this does NOT include aspirin) - You have NOT undergone a total abdominal hysterectomy (removal of the ovaries and uterus) - You are NOT currently pregnant or were pregnant within the last 12 months - You are NOT currently lactating or have lactated within the last 12 months - You understand that if you are eligible and choose to join this study, you are agreeing to participate in both the Shift Work and Breast Cancer Risk Study AND the Komen Tissue Bank. Some of your tissue sample will be sent to Dr. Finkielstein and the rest will be stored at the Komen Tissue Bank. Please note: If you have already submitted an RSVP for this study, you will not be able to RSVP again, as our system only allows ONE RSVP per study. If you think that you now qualify for this study, please email us directly at studies@armyofwomen.org to let us know that you can't RSVP online and that you would like to sign up.  Yes, Sign Me Up  No Thanks Recruit a Friend Grow the Army of Women

DECISIONS DECISIONS DECISIONS OH MY

It is most assuredly not a yellow brick road but it IS a path... a path with twists and turns and sometimes, unexpected curves and road blocks.  Life after a cancer diagnosis.  And I mean literally, the precise SECOND those words suck the oxygen out of a room.

If I'm going into metaphor mania, cancer would be the wicked witch that is snuffed out by a falling house.  The house would be the treatments we choose in our quest to live in the land of NED.  No evidence of disease.  I will leave it to you to figure out, in your story, who fills the shoes of Glinda, Tin Man, Lion, Scarecrow, Wizard, The Lollipop Kids.  The Other Munchkins. The Flying Monkeys.  A diagnosis of breast cancer and you are on that path.  Like it or not.  And suddenly, the Scarecrow is at a crossroads explaining how some people go this way and others go that way.  Every cancer is different and every decision along the way is highly personal.

Two characters remain standard for each of us.  We are Dorothy.  And that OTHER wicked witch?  The one who comes from the west or the east or whicheverthehelldirection... I suck at details like that... but THAT witch?  Like the story goes, she's worse than her sister.  She's the one we are running from, the one who has put such fear into our hearts.  We are constantly looking over our shoulders hoping we don't end up in that room with the God Awful Hourglass.  Filled with some degree of fear, we approach each crossroad hoping she isn't lurking and ready to pounce.

Shifting from the scary movie and into reality, this is Life Post Cancer for many of us.  For me, I have about six different doctors that I see at various time during the year.  The frequency depends upon the doctor.  The oncology follow ups are the ones that create the most distress.  Now at six month intervals, I get a bit tense the day before an appointment.  I get a bit fearful when I pull into the parking lot.  It's where I was told, it's where I had my first biopsies, it's where I sat in a chemo chair.  It's one of the less pleasant places in Oz.

OK... This is one of THOSE posts.  Hold tight while I reel my brain back in.....There is a reason for the title.  And there is a point in this metaphoric maze.  When I was diagnosed, I was faced with choices.  There has been lots of chatter about patient awareness and asking the right questions and gathering information before making what might be a life altering decision.  I'm connecting the dots backwards as Steve Jobs talked about in that now super famous Stanford commencement address.

There is an element of waiting in the treatment process and I remember the very first doctor on my cancer team dispensing pearls of wisdom.  The important ones stuck with me.  "Waiting is the hardest part.  Try to remember that."  It took three months, three doctors, three tests followed by three invasive procedures to find the big C.  Until THREE days before I was told, I did NOT believe I was walking around with cancer.  In other words, I had three months before I set foot on the runaway train.  And upon video review, this begs the question.... "AM, do you suppose any of this plays into your OCD with things in threes?"

During those three months, I pored over every word in the first two pathology reports and I used the internet very responsibly.  (That DOES sound like a typical AM wise crack, but I was cautious about where I searched for my info...... )  I had a good foundation and a decent understanding of things by the time I was blindsided with the words "invasive lobular carcinoma."  Now I was on that runaway train, or to stay in metaphoric Oz mode, I was trapped in the house as it got sucked into the vortex before landing on that damn witch.  I realize that foundation helped me to understand things that I just presume every cancer patient would already know.  Backward dot connecting?  I did NOT know this until I studied for my dissertation. Studying and learning.  And my brain was still BC.  Even if my body was already EF without my knowledge or permission.

There is a difference between a recurrence and an entirely new breast cancer.  That is the whole point to this story and why it always takes five (okay wise-ass, yes it's EIGHT) paragraphs to get to the point?  It's who I am.... It's what I do..... I ramble.... It's AM's CB.  The shortest distance between two points is a straight line. Tra La... got it.  But my brain zigs and zags.  And I let it.

Two different situations.  Recurrent breast cancer and a entirely new breast cancer.  You are MONITORED for recurrent disease and you are SCREENED for new disease.  Part of the reason I opted for a bilateral mastectomy was not the fear of recurrence.  Fear of recurrence is something many of us learn to weave into the tapestry of our lives.  It's there.  But it's just a small imperfection that adds to the unique quality of our tapestries.  Recurrence will happen in some of us.  It may be local (still confined to the breast) or it may be distant (it spread).  It's been said the only thing worse than hearing "You have cancer," is hearing, "The cancer is back."  Recurrence, while statistically less likely in my particular case, Can Still Happen.  I can't control it so I refuse to obsess over it or allow it to command any more of my life than what cancer has already stolen.

My choice was made to minimize the chance of developing a second breast cancer some years down the road.  I began calculating my risk factors.  What is the likelihood I might develop a SECOND breast cancer?  And I see I am at risk because I am a woman, the risk increases as I get older, I am at a higher risk because of my mom's diagnosis, MY OWN cancer added a risk factor, we were both pre-menopausal and under age 50 to continue piling it on.....There just seemed to be too many things in the "These Odds Suck" column.

Did I really want to have to deal with this twenty years down the road which seemed to be the statistical marker for that second diagnosis? Bearing in mind that medical knowledge has the power to explode exponentially, I am going by the information that was available to me in 2006.  I did just poke around a bit and that twenty year mark is still, in 2012 being bantered about.  I'm not looking to sensationalize anything.  Not going to quote a statistic (not my gig... statistics and soundbites) that I can't fully back with proper peer reviewed publications.  I am just sharing something.

I seemed to understand in 2006 that I wasn't gaining a statistical edge with regard to the possibility of a recurrence.  It was all about removing the breast tissue to gain a statistical edge over a second breast cancer.  It happened to my mom. Twenty years later.  Exactly twenty years later.  Not a recurrence of 1987.  A completely new breast cancer.  I made the right choice.  I got courage from the Lion, love from the Tin Man and knowledge from the Scarecrow.

Now?  I want those Ruby Red Slippers.  And I want them now, damn it!  The elusive slippers.  In the quest for those slippers, that wicked witch just melted away.  In my metaphorically maniacal musing, Glinda is in a lab somewhere getting ready to mass produce those slippers for all of us.  And one day we will don those slippers, close our eyes and know that Glinda is whispering in our ears.  You are protected now.  Those slippers will protect you.

Your cancer is cured.  Your cancer is cured.  Your cancer is cured.

Step aside, Wizard, you are standing in the way of progress.  The lady has some work to do.

WE INTERRUPT THIS BLOG.....

As part of my commitment to Army of Women as a supporting blogger AND as the NYS Troop Organizer (sounds really really important, right????), I want to see the counter on the home page continue to climb.  Truthfully, I hope we can begin to step it up.  This laid back pace doesn't really fit with my NY State of Mind.  Just sayin......


Since the primary goal is filling studies, there will be days I will interrupt my regularly scheduled insanity to get the word out about new studies.  Today's broadcast will be seen in its entirety.  Tomorrow.  This is more important.  And, if you think this ingenious idea doesn't work, two studies were filled in the past week!   


The response to this study within the first day was overwhelming.  If you never had breast cancer but you did have a biopsy done which, thankfully was negative, can I ask you to consider donating some of your time?  This is a study that can be done from your computer and with a telephone.  You can reside anywhere in the USA.  You don't have to leave your home.


Can you do a phone interview? Answer a written questionnaire?  Are you willing to have your pathology slides from that biopsy sent to MD Anderson?  Hell, you already did the hard part.  Those slides are just sitting in no man's land.  


What's that I hear? Yes, Yes and Yes!  Ok... scroll down to read all of the details to see if you fit the rest of the criteria..... Wait, I think I just heard someone say they had a cancer diagnosis but they know a relative that may just fit the ticket.  Pass the info along?


Let's close this one out, too.  I have an affinity for Things In Threes.  

The Overview:

Alongside the research team at M.D. Anderson Cancer Center, the Army of Women has just launched Phase 2 of the Discovery of Early Markers of Breast Cancer Study to investigate whether the amount of DNA damage seen in the cells of normal breast tissue might indicate future breast cancer risk.  They’ve already collected data and tissue samples from women who had a benign biopsy but then went on to develop breast cancer. 

NOW, they need women who had a benign breast biopsy but did NOT go on to develop breast cancer!

We need women anywhere in the United States who had a benign breast biopsy after January 2000 and have NOT been diagnosed with breast cancer. Some women who have had a benign breast biopsy are at higher risk of developing breast cancer than women who have not had a benign breast biopsy. However, there is currently no way to determine which women who have had a benign breast biopsy will actually go on to develop the disease. We have recruited for this study in the past and now need your help for the next phase. The researchers are now looking for women who had a normal breast biopsy but have NOT had breast cancer. Please read on to learn more about what’s involved and who can participate. If this study isn’t a good fit for you, please pass it on to anyone you know who might be interested! What’s the study about? A research team at M.D. Anderson Cancer Center is investigating whether the amount of DNA damage seen in the cells in normal breast tissue may be an indicator of future breast cancer risk. Previously, the researchers recruited women who had had a benign breast biopsy and then went on to develop breast cancer. NOW, they need women who had a benign breast biopsy but did NOT go on to develop breast cancer. By recruiting women who did develop breast cancer and women who did not, they will be able to look for markers in the breast cells that might be an indicator of breast cancer risk. What’s involved? If you agree to participate in the Discovery of Early Markers of Breast Cancer study (Phase 2), you will be asked to fill out a questionnaire about your reproductive history, smoking history, and family health background. You will receive and then return the questionnaire by mail (at no cost to you). You will then need to ask your doctor or pathologist for two things: the pathology slides from your benign breast biopsy and a block of your paraffin embedded benign breast tissue. (You will be given a detailed instruction sheet to give to your doctor or pathologist to explain what is needed and why.) You will mail these items to the researchers, at no cost to you. If you prefer, you can give the research team permission to request the pathology slides and tissue block from your doctor. The researchers need to enroll 400 women in this study. Who is conducting the study? Dr. Isabelle Bedrosian and Dr. Abenaa Brewster, M.D. Anderson Cancer Center, Houston, TX Where? Anywhere in the US (all participation is handled in the mail) Who can participate? You can sign up for the Discovery of Early Markers of Breast Cancer study (Phase 2) if you match ALL of these MAIN categories: • You are a woman over the age of 18 • You have had screening mammograms performed • You have NOT been diagnosed with breast cancer (including DCIS) • You had a benign breast biopsy after January 2000 • You were NOT pregnant or breastfeeding when you had the benign breast biopsy • You were NOT using birth control pills or menopausal hormone therapy when you had the benign breast biopsy • You have NOT tested positive for the BRCA 1 or BRCA 2 mutation (if known) • You live in the United States After you RSVP, the research team will ask you additional questions to be sure that this study is a right fit for you. Yes, Sign Me Up No Thanks Recruit a Friend In case those boxes aren't clickable..... Go directly to the study page on the Army of Women website.  Click right HERE!

I WANT TO BE A VERB

Do you watch football?  I am a sports fan.  An anomaly.  A women who understands lots of sports.  Including what we call soccer and the rest of the world calls football (or futbol).  And, I do understand the games.  I don't have to watch what the crowd is doing to decide if I should be cheering or crying into a beer.  FYI-I don't drink beer but alas, beer and sports seem to go hand in hand.  I however, prefer a great vodka, a smooth tequila, nice red wine or pricey champagne.  Sorry, Budweiser or Stella or whatever is trendy in the beer world.... just not my thing..... even when someone drops a shot glass into the beer and hands it to me-I'm told that tastes like chocolate milk.... ok... WAY off topic here.......

I'm not going to start explaining "off sides" or "downs" or "icing" but I DO know what they mean.  Over the past several weeks, I began to pay attention to the Denver Broncos. They have since been eliminated from Super Bowl contention and as of this morning, the stage is set.  A rematch.  NY Giants v NE Patriots.  NY v Boston.  The Broncos were ousted by Tom Brady and the Patriots.  Several weeks ago, however, I happened to catch the end of a Broncos game and it was damn exciting.  And it was all about the quarterback.  Tim Tebow.

This guy, uber-religious, has taken his skill to the gridiron that is professional football and for what appeared to the casual viewer (me), was continually pulling that proverbial rabbit out of a hat.  Week in and week out, for whatever reason, I would find myself in front of the television watching the tail end of a Denver game where the team was losing in the final moments (seconds?).  And week in and week out, this kid would have the rabbit hoisted in the air.  And I would be staring at the television, mouth in the fly catching position, head shaking from side to side, listening to my own voice: "Unbelievable. Wow. UNbelievable."

After each significant play, before allowing himself to be stormed by his teammates, he dropped to a knee in a prayerful pose of gratitude.  His skill on the field was garnering him plenty of attention.  Pulling these games out in the final seconds in such dramatic fashion made him the darling of the talking (and now insanely giddy) sports heads.  Dropping to his knee rather than spiking the ball or doing some sort of celebratory dance, turned him into a verb.

His antics are now known as "tebowing" and yes, that is googlable. (googlable=another person/place/thing noun turned verb which I just took to a new level by turning it into a different verb form...... perhaps one of the masterful English majors can tell me WHICH of the twelve verb types under which "googlable" might fit, I'd be much appreciative???????)  I am now filled with Verb Envy.  What can I possibly do in my life to turn myself into a verb.  I want to hear people saying, "She's AMing."  "They AMed it."  "Yes, you can AM that."  "It's definitely AMable."

The question now becomes obvious.  WHAT can I possibly do that will start out as a meme, go viral and thus elevate AM from lowly noun to mighty verb.  Can I take on the pink ribbon in some unique Tebowish way that would have people twisting their bodies in some crazy pose that is immediately synonymous with AM?  Something written?  A tongue lashing of epic proportions on a topic that stirs me with the fervent hope I can actually STAY on topic??

Wait!  I Got It!!  I'm going to make a list of possibilities and think about this for a spell.  Maybe one of YOU can meme it (or however the hell that word is properly used in a sentence and which, by the way is pronounced "meem" and requiring a google detour if you needed ME ME ME to share proper pronunciation.....) and help me in my quest for verb-dome!

For my consideration and anyone else who may care to chime in.....

1-The act of falling for no apparent reason
2-Tripping over my own two feet (related to item #1)
3-Falling UP the stairs (definitely related to item #2)
4-The ability to wear my age with pride and simultaneously FIGHT LIKE HELL to act like I'm a school-kid.
5-The need to have a hair holding buddy (not the same as a hand holding buddy and definitely related to #4)
6-Inventing my own words (Hurricado and Earthicane) and grammatically atrocious phrases (Anew Direction)
7-Writing like I speak thus turning the art of the pen into "Writing Like Jackson Pollock" (not necessarily related to, but definitely connected in some bizarre way to #6)
8-The act of speaking and then abruptly stopping mid sentence
9-Placing the middle finger of my right hand on the bridge of my nose and pressing firmly hoping that will reboot my mouth (positively related to #8)

Having brainstormed with myself, I'm leaning toward #9... number 9.... number 9....... number 9......

Next up?  I need to have someone like Jimmy Fallon who created TeBowie turn me into "AeMMY" and rework a song.  After some exhaustive research, here are my final thoughts.  I'll go with Emmy Rossum to be the Emmy of A-EMMY.  She's fabulous as Fiona in the Showtime series, Shameless but she was amazing on stage in Phantom.  Who wants to step in and rewrite the lyrics to "All I Ask of You?"  I'm pretty sure I can get my nutty girlfriend to dress up like she's on Broadway and perform the reworked version.

She may even give Jimmy Fallon a run for his money if we can get those lyrics as ingenious as he did.  I know she can belt it out and she can DEFINITELY don a suitable outfit befitting an opera star.

This is the game to beat:

STATISTICS, FIGHTS AND SOUNDBITES

I would like to direct your attention to a website called Direct Marketing IQ.com.  They are the research division of Target Marketing Group.  Recently, they did an analysis of the manner in which non-profits compete for donor dollars.  They note that "rarely have (the non profits) been so open about this competition than seen here with these four major breast cancer fund raising organizations."  Their comparison of the "very cutting edge batch of fundraising mail" of four of those organizations is highlighted in this video:

In case that link, cut and paste info is here......

http://www.directmarketingiq.com/item/breast-cancer-nonprofit-campaigns-use-different-formats-copywriting-direct-mail-dmiqtv-episode-29

The complete content of each envelope can be downloaded from their website.  The speakers provide excellent insight as to how and why the marketing is effective and of course, which one is most effective.  The explanation provided by Peggy Hatch and Ethan Boldt is proof beyond any doubt as to why it is absolutely essential to read past the hype before opening your wallet and donating one penny to anyone.

I HIGHLY recommend clicking the link and watching the video in which Ms. Hatch and Mr. Boldt analyze each piece of mail. The captions under each envelope are bulleted points of the speakers.  Fear, salvation, greed are just a few of the methods employed by some of these organizations and in the process, those of us who have a breast cancer diagnosis are being turned into a for profit brand rather than being treated like a woman with a disease.

I don't take offense with one organization taking jabs at another.  I don't take offense at the hospital (disclaimer to readers, I am both a patient and a volunteer at Sloan Kettering) for trying to garner as many donations as possible when there is an anonymous donor in the background offering to match funds.  Personally, I do agree with the way they utilize their donor dollars but that isn't the point.  Each of us is free to decide what "cause" speaks to us.

Bank of America pushing pink.  A problem.  A dire and ominous black envelope deliberately instilling fear and terror with a soundbite and adding insult to injury by slanting a statistic and then driving the point home with scratch off circles.  Not only am I being fed a skewed statistic, I'm being terrorized by the circles.  Each one indicating another family member. Daughter.  Granddaughter.  Sister.  Mother.

The back of that envelope is awful.  Scratch offs?  Now I'm a "brand" AND a scratch off lottery ticket, too.  Aside from finding this highly distasteful and personally insulting, it's misleading and that is disgraceful.

Let me PLEASE break down One in EIGHT, Once and FOR ALL.

I know what it is like to fall on the short side of a statistic.  I am not a fan of statistics and soundbites are quickly turning into pond scum bottom feeders from my perspective.  I know too many who fell on the short side; women diagnosed with breast cancer in their 20's and 30's which is a statistical anomaly.  I pulled the short straw every time a doctor quoted a statistical probability.  At least, however, I was not being mislead when I was provided with statistics.

The statistics I have displayed below are for women with no known risk factors.  I did have a risk factor as my mom was diagnosed with breast cancer in her 40's.  SHE was one in 68.  As a result, this chart doesn't apply to me.  However, I was STILL not "One in Eight" when I was diagnosed.  You see why I do not like statistics?  You really need to understand what you are looking at and whose agenda is being pushed.

Here goes..... Give the chemobrain a good workout and explain as simply as I possibly can what it means when someone parrots that soundbite: One In Eight.  The majority of us are NOT represented by one of those eight scratch off circles on the back of that dire black envelope.

For the sake of this discussion, let's pretend I am a 71 year old woman.  I am one in eight.  Yes, accurate.  Statistically and completely accurate statement.

As for my family members......

My sister is in her 60's
My older daughter is in her 50's
My younger daughter is in her 40's
My niece is in her 30's
My granddaughter is in her 20's

Not ONE of these relatives is at that statistical One in Eight.  Not Yet.  Just Me.  Grandma.  So, I am a scratch off and so are my pals at that weekly card game, scrabble group, knitting circle or wherever EIGHT women who are older than 70 might be found in the same place.

Where are the rest?  Well, let's see.  According to the American Cancer Society and Dr. Susan Love, here are the facts:

My sister in her 60's?	1 in 26
My older daughter in her 50's?	1 in 37
My younger daughter in her 40's?	1 in 68
My niece in her 30's?	1 in 229
My granddaughter in her 20's?	1 in 2000

And now... The Envelope(s) Please.......

Different types of outers, and leveraging the color pin, are used to engage the donor prospect.

An affinity promotion that appeals to both salvation and greed!

See how the copy driver FEAR is powerfully wielded by the black Komen envelope — and their inventive use of the back of the outer envelope.

The true battle is defined by the copy, as the Susan G. Komen are even told that "Pink Ribbons are not enough."

And a reminder, this isn't about who has the best marketing technique.  It's about WHO IS GOING TO GET THE JOB DONE. And who is going to be honest and transparent and not play on our fears.  Fear isn't going to cure this.  Terror isn't going to do anything other than, ummm, terrify us.  Research.  Quoting from one of my favorite soundbites:  We are not going to screen our way to a cure.  Research.  Why?  How?  Fix it.  And then stop it from happening in the first place.  Fear and terror have no place in this conversation.  And neither does a lottery ticket.

Thank you to the good folks at DMIQTV for jumping in with this information and for posting it to the BCSM twitter feed. Nicely done.  Very nicely done, indeed! 

SPRINKLE WITH SILLY, MIX, RESPRINKLE

I’ve come to a realization about my life. I’m aging backwards since my breast cancer diagnosis. Or maybe it’s been over the course of the past twelve months? Or it might have begun four years ago when I was helping my sister with my now almost five year old niece? Little kids tend to make adults act silly, or in my case, like a downright idiot.

When and why this began does not matter. The only thing that does matter? This Backward Momentum is just fine with me. I may be mortifying my late 20-something kids and I am apologizing here and now to both of you for being The Mom Who Refuses To Grow Up. That is an all-encompassing apology and will cover every moronic thing I do From Now, To Infinity And Beyond. I’m throwing down The Cancer Card. Just deal.

I’m beginning to understand the concept of coming to a point in life where, (inserting my best Clark Gable voice), frankly, I don’t give a damn. To be perfectly clear, my body most certainly is NOT aging backwards and my brain, when it DOES actually function, still does so in the proper decade. Mostly. I think. And then, I get chemobrain days and I am clearly, “Gone With The Wind,” which somehow makes it perfectly fine to do what horrifies most women. Admit my real age.

FIF-TY-FIVE. There. I. Said. it.

Sounds like it should suck, the age I mean. It doesn’t. Fifty sounded positively horrible when I was in the latter part of my 40’s. I spent at least three years dreading fifty. What a waste of three good years. If you are in that place with numbers, do yourself a favor. Kick back and stop thinking about it. It’s just a number. In my case, when The Dreaded Day arrived, I was a bit preoccupied with other stuff. Surgeries. Doctors. Chemotherapy.

Is it the number 50 or the cancer or my malfunctioning brain or all of the above? Clueless. I just know I am now a fan of things that span generations. I got hooked on that HBO show, Entourage. I am too OLD to watch that show. Yet, I loved it. When the series finale aired, I was DE-PRESSED.

As long as I am mortifying my kids who have no idea I am mortifying them because they are not reading this anyway......I’m also too old to be obsessed with “Hits 1” on my satellite radio?

“Mom, REALLY? Club music?!!? Change. The. Station. ”

I have no business fist pumping, as demonstrated on Jersey Shore and even less business dancing behind the wheel of my car to some guy named Pitbull begging me to give him everything tonight. Pitbull’s voice haunts me. But, driving and dancing? When a truck driver pulls up beside me in an attempt to get me to open my window, yep, time to GROW UP. And admit, somewaht sheepishly to truck driver: Buddy, I was on my way to get a touch up to cover my GREY HAIR.

While I’m on the topic of fist pumping, can ANYONE explain how I found myself in some trendy downtown club seated in the VIP section when those fist-pumping Jersey Shore guys arrived at said club? They were escorted to the sofa right beside me. Ongoing mortification of my unsuspecting kids. It’s Time. GROW UP.  Nah.  That was fun and it was funny and I don't have a sheepish bone left in my body.  And if I weren't having SO much fun, there would be photo proof of The Cougar Meets The Shore.  But alas, once cocktail too many.... missed photo op.

But "Grow Up?" .....  Not so fast. I can be multi-faceted. Cancer has a way of doing that. Drink in the silly. What a waste of MANY years when I felt I had to be “mom” or “wife” or “daughter” or “sister” or “perfect employee” or “whatever”. I am ME. I am AnneMarie. Embracing one to the exclusion of all others? Big mistake.  HUGE!  Lopsided life. Sprinkle some silly on it!  And, I'm NEVER too OLD to be YOUNG!!

Don’t get me wrong here. I’m not just some completely off the rails; this woman belongs in the padded room with bon-bon’s and magazines person. I am involved in some very “grown up” things, too. I spent an evening at a volunteer meeting at MSK in absolute awe of the people in the room. Cancer survivors whose stories were nothing short of inspirational and a pioneer female psychiatrist whose accomplishments are so astounding I can’t find a proper thesaurus word to capture how I felt. (And yes, for the record, I did check, not only Word’s thesaurus but a Google’d thesaurus AND my dog eared, yellowed with age desk version, too).

I was in the presence of greatness (Dr. Jimmie Holland, in case anyone can’t take the mystery). It was a small table of a dozen people: miracle survivors and this very brilliant doctor. And me. And this is the beauty of 55 (when I actually manage to ACT 55).  Or, it's the beauty of Cancer. Or, perhaps a chemo affected brain?  Or learning to live in the moment.  Or sprinkling on the silly and NOT taking everything so damn serious.  Some things are not worthy of the effort we expend trying to resolve "stuff."  Some "stuff" is too "silly" and what a waste of energy better spent doing something really productive or just plain being silly.

A few years ago, I would have been intimidated. I would have felt like I did NOT belong, that I had nothing to contribute. I’m not that person anymore. I sat confidently and damn, it felt great. Come to think of it, there was a discussion at the end of the meeting and it began to get a bit tense. A “majority rules” decision necessary and two people with completely oppositional views? Someone was going home unhappy.

I made a suggestion. ME. With chemobrain blocking all chances of overthinking anything, I made a silly suggestion. Problem solved. And I’m being acknowledged and THANKED for my silly solution. By BOTH of the people who were at the polar opposite sides of How Do We Handle This Problem? I felt like Julia Roberts in “Pretty Woman.” You know the scene? She’s in the bathtub and she submerges herself in the bubbles as she shouts, “Holy Shit.”  Any comparison to Pretty Woman is completely & twistedly appropriate.  I'm a validation whore and this was a super score.  Comparison to Julia Roberts?  Utter silliness.  She IS the hot girl, I just deal with heat.......drug induced hot flash heat and you are in hot water heat and I hate the winter so 90 degree heat with blazing sun works, too. 

Pseudo Julia silly me said my goodbyes as the meeting concluded and I got into my car.  The volume on the radio was exactly as it was when I parked.  It was a ridiculous, going to blow the speakers level. Fitting music blaring: Lady Gaga and The Official Anthem of AnneMarie.

Gaga, Pitbull, Jersey Shore? Seriously?! Entourage, however…..thanks for pulling THIS together by closing the series with an all time favorite Led Zeppelin song. It was fitting and it was genius and if those guys could steal a song from my younger days, I’ll just keep aging backwards.

♬ “Standing on a hill in a mountain of dreams telling myself it’s not as hard as it seems.”♫

I’m on the hill, living my dream but mostly, ♫ I’m on the Edge of Glory! ♫  And maybe, I WILL BE “Goin’ to California” but I can assure you, it won’t be with an “achin’ in my heart” …..  It will be with "Paws Up"  yup, definitely, paws up!



PS-I owe a note of thanks to Lani who blogs at ChemoBabe.  WHY I remember this, clueless... but I seem to recall reading something she wrote many months ago about "drinking in the happy" ......   and those thoughts stuck with me..... She's happy and smart.  I'm just silly.  We both, apparently, drink.  I'm guessing me more than she...... And, I had it ALMOST correct... she wasn't drinking....  If you read her blog, she was "filling up on happy" ----  translation and correction... I apparently drink alone.

REGIFTING MY OWN WORK

Note:  Since there is a good chance the internet will be crashing all around me with this National Boycott The Internet where all these websites are doing a 12 hour "fade to black" protest, I'm pulling an entry from the archives.  I'm pulling an #OccupyMyBlog.

This was written and posted in July, within days of my brazen and bold maneuver to go public with my zig zag brain.  I can't think clearly.  I DO want to share some thoughts about statistics and surviving and living cancer free and the misuse of the word cure but the pain in my very swollen ankle is wreaking havoc in my brain.  I have foot in head disease.  No way I can embark on a writing journey where I will make any sense with my words.

With slight changes, this is from July.....  

I am a medical news junkie.  And, I am a medical advocate junkie, too.  This started, in part, when a friend who means the world to me was diagnosed with such a rare form of thyroid cancer, she had better statistical odds of hitting power ball, THREE times (AT LEAST three times), than she did of getting this cancer.

I quickly learned how to navigate the internet for established medical protocol, cutting edge research and THIS.  “This” is me trying to share whatever information I may have stumbled upon in my travels that might be useful to others. The internet is global brainstorming at its absolute finest.  Combining the information from major cancer centers, smaller research facilities, things already being done in Europe, and the real world experiences of patients who have shared their stories on support sites or in blogs has proven to be an invaluable tool.   

In the case of my friend, there isn’t a whole hell of a lot of stuff out there.  Medullary Thyroid Cancer narrowed even further to a subset involving a particular genetic mutation?  It’s worse than the haystack/needle thing.  Like I said, power ball.  Three times.  Breast cancer? Even being diagnosed with a less common type, which happens to have been the case with me...... pink ribbons everywhere.  

I love a good mystery and I love to solve problems.  I love the if/then logic that goes along with proving a geometry theorem.  I love deciphering a “story” and finding one single inconsistency, and then watching the whole story unravel.  It’s the way my mind works.  Things either make sense.  Or, they don’t.  Details.  I’ve always been big on details.

For many months, I’ve noticed my own cognitive challenges and I began searching high and low for any information I could find.  There isn’t much.   We are part of the first group of “long term” survivors.  When so many of us began expressing concerns to our doctors and I’m guessing here, but when so much of our bitchin’ and moanin’ had such commonality, a pattern began to emerge that was impossible for the doctors to ignore.   

Every ONE of us “drops words?”  We all have this attention deficit that never existed in our lives?  We all thrived in various forms of high pressure, switch gears in a split second type environment and we are all giant balls of confusion?  Thinking on our feet?  No problem!  And now?  Hell, we can’t even figure out how to START addressing any sort of semi-complex problem.  Where have those people gone?  We’ve fallen into some rabbit hole from which we can not climb out….. 

Fortunately, our “whining” has captured the attention of some very brilliant minds.  We are now the subjects of a global collaboration of research.  I don’t want suggestions.  I want solutions.  Before there can be a solution, the problem needs to be clearly identified.  Then, I think the next step is attempting to determine the cause of the problem.  Is it possible to solve a problem without really knowing its cause?  I don’t know the answer to that one.  Seems highly doubtful.

Awareness is huge.  We are aware.  Those of us who are told we are functioning within “normal ranges” but who know we are falling far short of our BC capabilities are acutely aware and in my case, horribly frustrated.   More frustrating than my limitations, is the non-chalance with which this had been addressed until most recently.

This is the period of time I like to think of as:  Throw everything at the wall and see what sticks.  Lots is being thrown at the wall.  Thankfully, it appears from the research standpoint, there IS a collaborative effort and most everyone working on this is now throwing stuff at the SAME wall.  When a new study is published, it references prior studies.  

Mostly, I no longer feel so alone.  I am validated when I see new information.  I know I am a part of one of the newest areas in cancer treatment.  For years, survival was the only goal.  Cancer WAS a death sentence.  In fact, I just got a newsletter from a local hospital where they note that in the 70's, the five year survival rate for all cancers was just 50%. Between 1999 and 2005, that number jumped to 68%.  Now, the tide has changed for some of us.  Breast cancer patients have benefited tremendously from the advances in screening, early diagnosis and the cocktails of drugs and the tests they do on tumor tissue to see which drugs will be most effective.  

But, they are drugs and those drugs are TOXIC.  Are there degrees of toxic?  Absolutely?  But toxic is TOXIC and I HATE HATE HATE being told “but you had such MILD chemo” ….. Really? How about this?  You sit in a chair for three hours at a clip with a needle dripping poison into your blood and then YOU can tell me about my “mild” chemo….. 

And, I especially hate the term “good cancer.”   Some of us have a better prognoses than others.  It doesn’t make the cancer a good cancer.  NO cancer is the only GOOD cancer.  I am thankful, grateful, lucky, fortunate-all of those positive adjectives.  And I do FEEL that, I DO believe that…. but a cancer diagnosis is STILL a game changer.

My logical if/then brain gets it. 

IF

Major cancer institutions believe it is essential to incorporate long term quality of life issues (including chemobrain) into treatment guidelines.....

THEN

The treatment is successful.  We are surviving.  And that’s really more important than anything else.