Tuesday, December 27, 2011

OFFICIALLY TAKING THE WEEK OFF

I'm putting in my vacation time.  Or, I'm calling in sick?

I need to refresh recharge rejuvenate reflect.

Enjoy the last few days of 2011.

Tying up a few loose ends, enjoying time with my kids and just taking it as it comes for the next few days.

Happy New Year!!  Here's to 2012.  Hoping for great things.  I have high expectations for progress.

See you in a week.....

AnneMarie

Monday, December 26, 2011

JOIN AOW



Did you get all of the gifts you hoped for?  How about a gift for me??  Did you join Army of Women?  If so, THANK you... if not, WHY not????  Take a moment to listen to what dr. love is saying about what we learned in 2011 and her hopes for great things in 2012.  Mine too.  Yours as well?  THEN:  

Join Via Lifetime Moms


IF THAT LINK DOESN'T WORK, GO STRAIGHT TO THE REGISTRATION PAGE  

have every woman you meet grab their phone and text armyof women to 46637

i need you to be the ripple effect.... I'm appointing everyone who reads along with me a helper.  We CAN see the one million goal achieved.  All you need to do is TELL someone and ask them to do the same.  Keep the ball rolling!


ONE MILLION STRONG STARTS WITH ONE—YOU

The Dr. Susan Love Research Foundation's Army of Women Program (made possible thanks to a generous grant from the Avon Foundation for Women) offers a revolutionary new opportunity for YOU to partner with research scientists to move breast cancer beyond a cure.
What is involved?
  • Register TODAY and provide us with very basic information such as your name, email, age, city, and state of residence.
  • You will receive email updates from us announcing new research studies looking for volunteers with or without breast cancer, just like you. There are many different types of studies. Some might require you to complete a questionnaire, while others might need a sample of blood, urine, saliva, breast fluid, or breast tissue. Some studies might be clinical trials testing a new detection marker or drug. You decide which studies you want to take part in. The email will detail the research project and who and what the researchers need.
  • If you fit the criteria and you’d like to participate, all you need to do is “RSVP” and let us know you’ve accepted our “Call to Action.” You will be asked to go through an online screening process to confirm you fit the criteria for the study.
  • Once we confirm your eligibility for the specific study, your information will be given to the researcher conducting the study and you will be contacted by the researcher for a secondary screening to make sure you meet the study criteria and answer any questions you might have about study participation.
  • You are in complete control and you self select what you want to do! You will never be pressured to take part in any study. The decision to take part is yours—and yours alone.
Breast cancer has been around for decades, but it does not have to be our future. We can be the generation that eliminates breast cancer by identifying what causes this disease and stopping it before it starts. Sign up for your sister, mother, daughter, granddaughter, best friend, and the woman you met last week.


Friday, December 23, 2011

HAPPY JOY MERRY & ALL THAT STUFF

Yesterday's blog was a downer.  The truth buried beneath the sea of pink.  Reality.  But reality is a downer.  Today is the 40th Anniversary of the Official War on Cancer.  Since this may be the last new entry until 2012, I couldn't end what has been a life transforming year with an angry tone of activism.  By the same token, I was not going to let it sneak by just because we are peeking through the holiday keyhole.  Activist AnneMarie is in the back seat.  I spoke my mind yesterday.  It was important and I hope you will take the time to read it.  In, perhaps, a less joyous moment?

Although, you should DEFINITELY LISTEN to Dr. Love's 2011 Recap.  In less than five minutes-a WEALTH of info!  It was absolutely necessary for me to interrupt your usual programming to include that link.  Now, back to your regularly scheduled Happy Happy Joy Joy which will appear in its entirety.....

Whereever you are located in this world and whatever holiday you happen to celebrate, I hope you are filled with joy and peace and love.  If the laptop calls me next week, I will answer, but if it doesn't, and my next rambling thoughts are when that counter on the top of this page starts with a number SEVEN, Happy New Year.  Happy 2012.

Thank you for participating in my transformation by reaching out to me from your screen to mine.  Thank you for sharing your stories with me.  Thank you for embracing me with a welcome so warm that I feel at times, I am living someone else's life.  Thank you for the precious gift of friendship.  

I leave you not with Tchaikovsky's Nutcracker which happens to be one of my holiday favorites but with a song from over 20 years ago.  The lyrics are appropriate.  I love this song today as much as I did in 1987.  And, I just had a light bulb moment.  AD, OMG and Shut UP.  It's no longer about Anew Direction.  I already have the direction.  Now it's about each day and EACH day is A New Day.  I've come full circle.  In the beginning of my blogging, one of the very first entries was an effort to ......  never mind..... I'll repost all of this AD nonsense next week.

A New Day
By:  Basia  -  

The Lyrics (scroll down to hit the video if you are so inclined to listen as you read)

Hello again ---it's me

Your shoulder's where I sit
The half,nobody sees,of a silent partnership
I am here---your help at hand

I'm never far away
A clear view from where I stand
I'll be there if you need me

I am your helping hand
My words---you've heard them all before
It's only for the sake of love

It's gonna be a new day for you
A new day for you
The stars have played their part
The past is gone and done
Have more faith in love
The best is yet to come

So what is this I here

you deserve a break

Take time to think it out
Don't make a new mistake
I am here---your help at hand

It's gonna be a new day for you
A new day for you,new day for you,new day for you
The stars have played their part
The past is gone and done
Have more faith in love
The best is yet to come

My words---you've heard them all before
It's only for the sake of love

The stars have played their part
The past is gone and done
Have more faith in love
The best is


It's gonna be a new day for you
A new day for you,new day for you,new day for you
It's gonna be a new day for you
A new day for you,new day for you,new day for you

Hello again ---it's me 




Thursday, December 22, 2011

THEIR SIDE...OUR SIDE.....& THE TRUTH

There are three sides to every story.  Not an unfamiliar statement to most.  Me?  The person from whom I heard those words:  My Dad.  Many of us will celebrate these holidays still saddened by the loss of loved ones and again, I say, I miss my dad. So. Much.

This may not qualify as a "story," but nonetheless, it does have the requisite "Three Sides."  Here goes, the three faces of "Prevention Is The Cure."  Their Side, Our Side and The Truth.

Their Side:  There are things we can be doing to reduce our risk of cancer.  I'm not going into a dissertation.  Most of us know what we should be doing.  Some of the information is conflicting and the bottom line?  DESPITE doing everything right, people will get cancer.  I didn't understand why someone tweeted such disgust over hearing "prevention is the cure." Now I get it.  Some of us are subjected to insinuations that a breast cancer diagnosis was the result of something we did or something we failed to do.  That somehow, WE should have been able to prevent the disease and our cancer is our own fault.  It's your diet, your alcohol intake, your lack of exercise.  And even if our choices were less than stellar, do we REALLY NEED to hear that in a time of utter terror anyway?  A word of advice to friends, family and anyone else who thinks it's appropriate to make these comments, if I may?  S.T.F.U. REALLY, not appropriate.  Sensitivity training is in order.  We do ENOUGH to beat ourselves up at diagnosis, during treatment and in the years that follow.  Personally, I suffer survivor guilt when I see those who are in treatment for metastatic disease and my ONLY "real" problem is that I feel like The Scarecrow.  If I Only Had A Brain.

Our Side:  To the cancer patients who feel that the catchphrase "Prevention Is The Cure" is simply an extension of being guilted out by the medical community or by some of the organizations and researchers working tirelessly to help us, this is not simply more people laying the responsibility for a cancer diagnosis at our feet.  When THEY say this, they are not preaching lifestyle or asking, "What did YOU DO to develop your cancer?"  The statement means exactly as it reads.  The way to CURE breast cancer is to PREVENT it in the first place.  A cure is needed for those living with the active disease or surviving with NED (no evidence of disease) and the research, in my strongest possible opinion, should be focused on curing and then repairing the damage done in the quest for NED.  In my case, I'd like my old brain not that it was such a fabulous brain but it's damn frustrating to KNOW the difference between what was and what IS.  Yes, I'd like my old brain back.  I'd like to ditch those words, "new normal."  I'd like to stop freaking over every pain that lingers for more than ten minutes and I'd love to lose the need for ongoing and constant follow-ups with doctors.  I'd like the researchers to study in earnest to figure out WHY some of us develop breast cancer.  In finding out why, they will be taking a giant leap toward figuring out HOW to prevent this disease in future generations.

The Truth:  The National Cancer Act was signed on December 23, 1971.  Happy Friggen Birthday.  I wanted to be the first to say Happy Birthday so I'm a day early.  FORTY YEARS AGO.  Officially, Day One in The War on Cancer.  This pisses me off in ways I can't begin to describe.  How much did you accomplish in your lifetime, National Cancer Act?  Still living with mommy?  Typical Underachiever.  AND, not for nothing, but thanks to The Pink Thing, I'm guessing there have been MORE dollars thrown at that pink ribbon than at any other cancer.  Going for drama..... probably more money thrown pinkward than all other cancers combined?  No need to tell me if I'm wrong I'm making a point, punctuating it with a bit of dramatic effect (poetic license if you will).... can I ask you just go with it please?

It's time to shift everything.  It's time to shake things up.  It's time to understand WHY.  It's time for real change.  It's time to change the stupid status quo.  More poison?  Newer poison?  Better plastic surgery techniques?  New drugs to counteract the effects of the poison?  More targeted radiation to prevent damage to perfectly healthy tissue?  More effective creams to help with those radiation burns?  Specialized areas of mental health to deal with the fallout that begins with those dreaded words and continues for a long time post active treatment?  THIS is a giant waste of money and talent.  Just My OPINION.

Bottom line.  Despite billions of dollars and decades of research we are still being mutilated, we are still losing our hair, we are still throwing our guts up, we are still developing awful sores in our mouths, we are still suffering with lymphedema, we are still dealing with PTSD.  We are just dealing with it a little better.  Supposedly.  Personally, I hate throwing up whether it's a violent and sudden projectile thing or that tingling feeling in my jowls that has me sitting on the floor of a bathroom all by myself within the chemo suite because I knew I would not make it to the exit of the building without making a mess somewhere in the lobby.

This day. Early afternoon.  January 16, 2007.  I did a quick assessment as I faced doors number one and two.  I didn't want to draw the attention of a patient still being poisoned or an oncology nurse who was needed by said patient, in that particular moment, more than I needed her.  Vomiting assistance is only required when you need a friend to hold back your hair if you get what I mean.  I wasn't wobbly on my feet and I was perfectly capable of handling the hair situation (and fyi-The Truest Test of A Real Friend, I mean really.... think about it....)  I just wanted to get it over with already.  That jowl thing was getting pretty persistent.  In front of me, the door leading out of the torture chamber to the outside world.  To my left, the bathroom. Decisions, decisions.  I decided. "Left."  And there I sprawled.  On a cold tile floor.  Leaning over what I hoped was a pristine, germ free toilet.  Nauseous, crying and waiting to hurl the contents of my fairly empty stomach.  Ten solid minutes. Countless dry heaves. Several hurls.  All Alone**.

Is is appropriate to be Debbie Downer right before Christmas?  Yes.  People will die.  The Grim Reaper doesn't check the calendar before deciding that will be The. Last. Breath.  As long as that is true and many will die over this weekend, I'm not Debbie Downer.  I'm Realistic Rita and Bitter Better and Activist AnneMarie all rolled into one.

Can we all get on the same page?  2012.  I'll be making noise.  That's My Promise to myself-My Holiday Gift to me and to my daughter and to women everywhere.  I am still figuring out how to shake things up but I am persistent, I have some ideas and my new OCD ChemoBrain adds to that persistence.  The Upside to My ChemoBrain.

The National Cancer Act?  Little more than words on a (several) page(s).  That may be my springboard.  And to think....... I got The Good Cancer.  I had The Mild Chemo.  I Got a Free Boob Job.  I am In Remission; And the TOTALLY misinformed might insist I am Cured.  How awful for those not nearly quite lucky.


***All alone.  Not being a martyr.  Hated company during chemo.  Being alone was by choice.  My choice and I lied to quite a number of people about who would be taking me for that particular poisoning. Everyone who asked was provided with the name of someone they did not know and could not "check with" to see if they could "split the shift."  Specifically, that is to YOU mom..... dispense with the guilt and remember, your hands were full at the time.


There WILL be a Happy Happy Joy Joy entry up tomorrow.  Just had to get this off my chest.






Wednesday, December 21, 2011

SCROOGE NO MORE

Before Sunday, I had not even given a thought to the calendar and the fact that time does march on and Christmas is coming whether I do something or not.  In the span of 16 hours, Christmas exploded in my face.  A tree was purchased. Somehow, I managed to get it lit and now there is a scent of pine and the glow of my candy cane lights.  They are red, white AND clear.  I bought them last year.  Got tired of the "all clear lights" tree.  

The big break from tradition was when I decided to give up the angel who overlooked the whole scene in favor of a star that gently changes colors.  I think I recall my son saying I was being very radical about the whole angel thing.  "Whoa, mom, take it easy there.  You are seriously NOT putting an angel on top of the tree??"  Nope, I was starting a new tradition and that star was symbolic of the light that would guide me.

You see, last year, Christmas was pretty awful.  I was in the midst of a shitstorm that, if I have to compare, was worse than chemotherapy.  I can't believe I actually just typed that, but I gave it some thought and this is where I'm coming from. I knew I had to take care of myself when I was on chemo.  For that matter, and more importantly, my loved ones knew I had to take care of myself when I was on chemo.  Moreover, they knew there was a possibility, I might be in need of their assistance.  We all know one thing about post treatment life.  We just simply return to normal.  Yep.  That's the world according to those on the outside looking in.....  It's over and it IS.... but, it's different and can someone please get the outsiders to just embrace "it's different" ....  I think that is the BIGGEST problem facing the survivors.  Just acknowledge and validate us.  

Meanwhile, the mess that began in August of 2010 was coming at me from every direction.  I was not fully recovered from surgery and the sideshows were really * really * really bad.  There was NO way the 2010 Christmas tree was going to resemble any tree from Christmas Past.  I was alone in choppy water and I was fairly certain the boat was going to capsize.  At some point between December 2010 and July 2011 I realized my boat was taking on water at a rapid pace.  I hadn't capsized but there was a now a chance I might drown.  And suddenly, the choppy waters began to calm and I found the lifejacket and I just jumped overboard.  Floating in the water could not be any worse than the time I spent in that boat.

Today, I am staring at the nicely lit tree (still in need of ornaments), looking past the boxes that I must wrap (indeed, I must finish shopping) and I'm basking in the joy of a day where I was a tourist in my own city!  Christmas through the eyes of my not quite five year old niece in a city that does it up pretty good around holiday time-it is infectious.  I bumped into many people and none were locals.  I held myself to a very high standard of being kind and polite.  I took it on my shoulders to be the face of NY for a few hours.  After all, it's what any certified It Girl would do faced with similar circumstances.

The day began on the train.  Adventure #1 for my niece.  When we hit the street, the familiar Salvation Army bell was ringing.  There was a twist-more on that later..... Off to Toys R Us in Times Square which begs the question, "WHAT THE F*&% ARE YOU THINKING WOMAN??"  Who knew Toys R Us has a REAL ferris wheel that is about four stories high right in the front of the store??  INSIDE the store when you first walk through the doors..... Not this New York'er.  The line wasn't very long and in moments all four of us were being strapped into our car and off we went (ala Disney World, the photographer was there to snap the picture).

Next stop, crosstown to all of the other venues.  American Girl Store, which was another version of WTF are you thinking except this was a store filled with a different crowd.  I prefer the I don't wanna grow up toys r us crowd.  Next stop, St. Patricks's Cathedral where my niece insisted upon lighting a candle.  The candles in St. Pat's are not those push the button ones.  They are real, pick up a stick and light a candle from another burning candle.  I'm visualizing her jacket getting a little TOO close and scanning for the holy water in case I have to douse a flame.

And finally, the crown jewel of our site seeing before we would head to Radio City:  The tree at Rockefeller Center.  It was majestic and beautiful.



That tree was a mere backdrop for those Salvation Army guys....  There was more of a crowd around these guys than were staring at the tree.  One more thing I never saw.  Talk about a tourist!  This was the most fun of the day.  I think we stayed through two complete rounds of music:

video
If I had more patience, I would have uploaded this to You Tube for a better quality video, but you get the drift.

Tough act to follow but we headed down the block to Radio City for the Christmas Spectacular.  My niece was mesmerized by the whole show.  We all were.  Nothing was more poignant than Russell Markert's "Parade of the Wooden Soldiers," which has been in the Christmas show since 1933. In it, the Rockettes move in rigid patterns that resemble military drills without a single trademark kick. "The Parade of the Wooden Soldiers" is masterpiece of precision and it concludes with the Rockettes standing in a straight line as they pretend to be hit by a blast from a cannon.   As they collapse one by one, each carefully hooking arms through those of the dancer in front and we were witnessing a painstaking game of human dominos.  Each dancer falls on the girl behind her and the last dancer has no choice but to crumple into an oversized red velvet cushion.

I suppose everyone who sees this performance takes away their own story.  For me, the cannon was breast cancer and each fallen girl represented another sister with a breast cancer diagnosis.  Or, the cannon was "The Magic Bullet" and each girl was being vaccinated because we finally had The Big Breakthrough.  I prefer the latter.......  That's My Grown Up Christmas Wish....





Monday, December 19, 2011

WHAT I LEARNED IN FIVE MONTHS

July 19.  Blog launch day.  Has it been only FIVE months?  Seems like yesterday, feels like forever.  I never understand how that happens simultaneously, yet, it does.

This is still my baby and we all know how new parents share the age of their infants.  Chemobrain is five months old. AnneMarie?  In a different life.  From Before Cancer, Entering Fog and now, Anew Direction.  Five months.  A cliche of a life at an age when realism crashed into idealism and I was the benefactor.  Did I effect this change or was it a product of right place, right time?  Perhaps both.

I know I am redundant, repetitious, resolute, relentless, resourceful and, at times, simply RE-diculous.  Re RE   REEE  .... My baby niece, calls me "Re-Re" ....  That started a because it's quite an accomplishment for a baby just learning to talk to say "Aunt AnneMarie" ...  Re-Re.... now I'm alternately, Auntie Re or, when I exasperate her, a simple, drawn out (with a twist of eye rolling in the voice) "RE- E"  A bit of foreshadowing of my personality traits?  All of these words with the prefix "re" ....

In five months or less, I've learned SO much and I've come to know SO many new and brilliant people, I've also learned we are SO stagnant in making any significant strides in the treatment of breast cancer and we are at an absolute standstill in the land of cure and prevent.

How could I know that I was not unique until I became part of a much larger community?  A worldwide community of women (and some men, too).  Issues surrounding survivorship which is the prism from which I peer are as vast as the colors emanating from that prism.  They are not insignificant.  It appears many more of us are affected by one issue or another than most would realize.

The lack of attention paid to those living with metastatic disease continues to appall me.  The sheer amount of very young women (really, they are JUST girls) who are breast cancer patients frightens me.  Lousy treatment that some are receiving from improper care because their doctors are being chosen by HMO's and some of our surgeries require a certain skill set is a disgrace.  Confused?  I have a tendency to do that.  I think because it's in my head, people can read my mind.  My point?  Being board certified in plastic surgery does not necessarily qualify a doctor to step up to the plate following a mastectomy to insert tissue expanders.

I've garnered enough information and managed to gain insight and knowledge to fill two lifetimes.  In less than five months.  I always realized the internet is a powerful tool to gather information.  IF it's used responsibly.  I understood for many years the power of support of people beyond the screen.  I found a support group many years before cancer came knocking.  Social media like Twitter, Facebook & the world of bloggers?  Its power continues to boggle my mind.

Today, as I hit the five month mark, in the midst of the season of joy, I pause and realize my life is forever changed. Enriched? That's a good word but it doesn't quite capture the fullness.  I hope everyone gets to experience this feeling at some point in their life.  It's simply magical.

Happy Five Months to me.  This is no longer about the blog.  It's about Anew Direction.  It's about peace and contentment. It's about being embraced by strangers who have become family.  It's about random acts of kindness; that 2AM tweet from someone halfway around the world because I was having A Moment.  It's about serious conversations to find ways to make a difference.  It's about sitting in someone's home with people who are meeting for the first time and spending two hours together as if we were friends for years.  It's about a serendipitous moment when someone "in the screen" realizes I am going to be moments from her home to staff a fund raiser and then, it's hours later and we are hugging and feeling that immediate bond.  It's about joking around with a bunch of girls on twitter about nonsense so we can laugh for the sake of JUST laughing.

It's about you and how my life is so much better because of you.  I'm feeling very holiday mushy these days.  And, my gifts are not wrapped, indeed, I'm not even done shopping.  The tree is still not up but that stuff is window dressing.  I finally get it.  The meaning of this holiday season.  It's what's on the inside that really matters most.  Peace on earth, goodwill toward all.... It's about time I'm embracing the joy of the season rather than the insanity of the shopping, decorating, baking, cooking.

To be perfectly honest, however, I'm feeling its also about time for this Zen alter ego who has taken over my body to take a hike and bring back the real AnneMarie.

Friday, December 16, 2011

FINDING MY WAY

I've been quite busy and what began a few months ago has morphed into a career.  I will be homeless and in a soup kitchen if the financial status quo changes and my monetary supply is cut but this is a labor of love.  I don't intend to change direction any time soon, either.  If shelters and soup kitchens will replace my comfy surroundings, so be it.  This stuff is important.

I know there are readers and I hope this blog is entertaining (which is how the whole thing began..... let's joke about every silly thing that goes on in my life).  Somewhere in the very beginning as I was learning about blogging and tweeting and all this other social media, I began to stumble upon things that troubled me.  Some of that very important information was being incorporated into my entries.  And I began throwing things at the wall to see what would stick.  I had no clear vision, I just knew I had to do something.

It wasn't THAT many years ago I recall being the target of the jokes, my family mimicking me.  Even though I have a bit of a deep voice, and since it's mostly the males that simply must crack the jokes, they would do that falsetto thing.  "It's just not fair.  It's NOT fair!  That's SO wrong!!!"  I am harshly realistic but those "not fair" feelings tend to have a bit of idealism at their root.

I began opening my mouth.  Blogging turned me into a bit of an advocate and that seems to be morphing towards activism. I think I might be taking that a step further.  Militant.  Given all the war metaphors attached to cancer treatment, there's an element of (dark) humor in becoming militant.  I will leave it to you to do the dictionary and thesaurus thing.

Anyone who has joined me for the ride knows the center of my passion is Army of Women.  Joining because I saw they were trying to fill studies about chemobrain (and every time one of those studies is announced, they are generally filled within hours in CASE anyone still doubts this is very real and it  does linger) and then realizing it was time for me to step up and make a difference to whatever extent ONE person can make a difference......  I volunteered to be a foot soldier. As timing would have it, the woman who was in charge of NY had to step aside.  And that was my springboard.  The day I decided to accept the role of NY Troop Organizer.

I was asked to do a print interview a few weeks ago and it "went live" on The BreastCare Site the other day.  I am proud (not Seven Deadly Sins Proud, but I may be making a difference delighted) to participate in anything that will advance the research and change the face of this disease.  Each place our story is told is one more opportunity to raise the RIGHT kind of awareness.  All awareness is not created equal.  Much like all breast cancers are not equal.  Aware that early detection is the answer?  We know that.

Spending more money to continue on that path to convert the "fearful" quite frankly, pisses me off.  There are 40,000 fearful women who will die this year and next year and the year after that.  The trend hasn't changed.  Why do we focus on the fears of those who statistically are likely disease free and virtually ignore the fears of those who are facing DEATH? Certain death.  THAT'S SO WRONG!

So much is wrong it's hard to know where to even begin or how to go about effecting real change.  I'm putting my ideas in place to make my path clearer.  Getting organizations to be completely transparent about how their "program dollars" are spent.  A five star charity means nothing in the context of advocating for change in my humblest opinion.  Just because over 90% of the donations go to the programs..... for me, that is simply not enough information.  It's not the RIGHT information for me to make a decision about where I am sending my money.

Suppose the "programs" are distributing pink ribbons.  Funding mammograms is great but the government and the states already seem to have that covered for women in need.  I want to see the "programs" that involve lots of research and lots of assistance for the women in financial need.  Cancer is costly.  Even with excellent insurance, I just got my notice from the insurance company.  My "co-pays" in less than two months were in excess of $800.00 and that does not include the ongoing medication and those co-pays.  And, I am FOUR YEARS out of ACTIVE treatment.

I am hoping to collaborate with someone brilliant and find a way to make people AWARE.  Just like the other inequalities I mentioned, all programs are most certainly not created equally.  Maybe you need another pink ribbon.  Me?  I prefer to see the money in a research lab or helping someone who does not have the means to come up with $1000.00 for in network benefits which still incur such a tremendous sum of money to be out of pocket.  In the meantime, my money will go directly to a researcher or I will find an uninsured woman and give those funds directly to her.

I know I'm oversimplifying what is a very complex issue and it's one that will take a long time to untangle. It took years for us to get to this point.  But it must start somewhere or it will never change.  I'm still finding my way.  I'm hoping as I continue talking, *Anew Direction* will become clear and that will be my role in making a difference.  I ask for your support in small ways.

Share the Army of Women link with every woman you know.  Mention the fact that surviving comes at a price and too many of our sisters will NOT survive.  I had the privilege to sit in a small audience and listen to Elizabeth Gilbert (Eat Pray Love) who at one point simply stated, "Tell your story."  More recently, my sister survivor, our sister survivor, Gloria Steinem talked about aging and the importance of telling the story to keep the movement alive.  When I can figure out how to imbed the video, I will. Meantime, it's worth 15 minutes of your time.....

It seemed to be a logical step when I decided to join the network of EmpowHer Bloggers in the hopes of reaching those who may still be unaware that life is very different on the other side of the pink ribbon.  EmpowHER is a supporter of the Army of Women.  There is an icon on the blog that says "1000 Women" and there is a link in the pages in the banner at the top of the blog explaining the initiative .....  I seem to be having issues with my blog layout.  On my mac, everything looks great. On my pc, not so much......  Blogger seems to be having issues.... but, if the screen is proper, the badge is in the right column.  Internet Explorer is stacking everything on the left-so some of my important widgets are on the left-all the way down at the bottom.  Wherever it is on your screen, can I get you to click that link to vote for my story?  It's really OUR story but I figured someone should Tell The Story.

I don't think there is any great big prize except that this might be OUR first step towards meaningful change and not just a soundbite for the evening news.  Happy Friday!  Happy Weekend!  Let's get our story told.  Let's start the conversation. I Told The Story.  If we can make it popular so it stays close to the top of the list, it's more likely to be read.

I have to believe we are starting something.  I want to be part of something.  Don't you?

Thursday, December 15, 2011

MEDICAL ADVICE FROM A CELEBRITY MAY BE BAD FOR YOUR HEALTH

Here’s my disclaimer.  As I sit here putting my thoughts on paper, the television show has not aired which may be a good thing.  Or not.

Tomorrow, Suzanne Somers is going to appear on Doctor Oz to discuss the “revolutionary surgery to rebuild her breast.”  Let me start by saying I think Suzanne Somers looks absolutely stunning.  She is drinking from the fountain of youth and despite some tragic life events, her smile lights up the stage.  She has an infectious laugh.  I like Suzanne Somers.

However, (you knew there would be a “but”….. ) I hope that people don’t get too caught up in whatever she is going to announce on television.  I don’t remember precisely when Suzanne Somers was diagnosed with breast cancer and I did not closely follow her treatment choices.  I could do a quick internet detour to speak specifically about that but I would be missing the most important point.

I am an actively involved patient.  I’m Inspector Clouseau heading up my own version of The Pink Panther chasing down whatever I could find about my disease, which, fortunately, impressed or more likely, amused my medical team.  I was asking my oncologist about testing my tumor “biology” to determine if chemotherapy was necessary way back in 2006.  Fortunately for HIM, he knew exactly what I was talking about or he would have been replaced.  I can’t know more than my doctor about the newest treatment advances.

The flip side?  My doctors, while I expect them to be at the forefront of everything new in breast cancer treatment, cannot and do not know more about my body than I do.  I ask questions and I take notice of things in my body.  That is just the collateral damage of a cancer diagnosis.  You are all nodding in agreement.  I know.  We get it.  Let the doctor tell me if that pain has to potential to be “something,” or more than likely, is “nothing.”  I’m not a hypochondriac about this either otherwise I’m fairly certain I would have been asked to find new doctors.  Or the more realistic scenario, I would have been treated somewhat dismissively and most definitely would be known as “The Obnoxious Patient.”

Calling the oncologist twelve days in a three week period freaking out about a headache is a very nervous cancer patient (understandably so) or a hypochondriac.  My job, however, as my own advocate is to bring (in this example) the headache to the attention of my doctor and to have my concerns addressed promptly, properly and respectfully.  I have a right to expect answers or explanations.  When I call with the same issue on Monday, Tuesday and Friday in a single week, I earned the obnoxious title and it’s incumbent upon me to consider any suggestions from those doctors about finding ways to manage my anxiety. 

Cancer may be a solo journey but it’s a team sport and we are the most important player on the team.  Everyone on that team should be kept in the loop with all the nuances specific to your disease and the treatment plan.  I can’t think of a WORSE place to seek medical advice than from a celebrity via a television.

Every cancer is different and one person’s magic pill is another’s poison or, perhaps even their lethal injection.  I know in my own case, if I were to follow what Suzanne preaches I would be putting myself at risk.  I can’t take hormones.  There goes my shot at her great sex life and fabulous skin.  For me, it’s a big trade off.  Am I fueling a rogue cancer cell by following her regimen?  The answer is yes.  Quite possibly, I am.

My cancer is different.  OR, my cancer is NOT different and Suzanne Somers just happens to be lucky.  There will always be those who fall on the good side of a statistic.  As I already stated, I don’t know the specifics with regard to Suzanne Somers but I do believe the majority of breast cancers are fueled by estrogen.  Slathering hormone cream or taking pills is not something I would even entertain.  Staying alive and cancer free is far more important than taking a risk because it worked for a celebrity.

I am beginning to see many retweets about the surgery that is going to offer hope to “millions of women.”  I can see this reaching a fever pitch by the time Thursday night rolls around.  The hype is beginning and it’s only Tuesday afternoon as I type this.
I did a little poking around and this surgical breakthrough is a “cell-assisted lipotransfer” which is in a clinical trial and Suzanne Somers is the FIRST enrollee.  The trial is based upon “promising results” of an earlier Japanese study.  I will let those lines speak for themselves.  I have no doubt the surgery was a success or there would be no appearance on Doctor Oz.  I am thrilled for her and I say that with deep sincerity and complete honesty.
I just hope that anyone who is a fellow passenger on this cancer bus realizes they should not be making personal decisions based upon what a celebrity is choosing to do.  My cancer is different.  Your cancer is different.
Learn everything you possibly can about your own disease.  Speak to your doctors.  Reach out to reputable websites like Is My Cancer Different.  Find breast cancer support communities in the real world or online.  Ask questions.  See what Dr. Susan Love is saying.  She did write the book often referred to as The Bible on breast cancer.  Learn how to read statistics rather than parrot a soundbite.  Talk to survivors.  Gather your information.  Make the best decisions for YOU and then, turn on the TV to see the choices made by Suzanne Somers.
I applaud any public figure whose voice will reach millions who is willing to say that all cancers are different and there is no “cookie cutter” treatment.  I am really impressed by those who take the time to explain a little about the nature of their disease to help us understand how they came to their decisions.  And I have enormous respect for those in the public eye who ask us to respect their privacy when faced with a serious health issue.  
It irks me when to hear half a story.  It irks me even more when I hear anyone in such a position make statements that aren't exactly accurate (that's another story that's already been told by bloggers far wiser than I am).  Tell the whole story or, just announce the diagnosis and ask for privacy.  I believe it is incumbent upon anyone with celebrity status to do one or the other.  Go public and tell all or go public and say nothing beyond the diagnosis.  Once you are on an interview sofa, in my most humble opinion, a person who is reaching many and then is unwilling to say anything but “I refused chemo and look at me,” is doing a disservice.  And, quite possibly is advancing some else's disease because there are people in the audience hanging on to their every word.
Her cancer may have been different.  Or maybe she was lucky.  If it was the latter, is that a chance you are willing to take?  I know it’s a chance I won’t take.   I’m sticking with the proven science that is medically accepted by the doctors and researchers around the world.  I like a holistic approach.  I embrace herbs and botanicals as long as I understand what they are doing to my body and how they may negate the benefits of medication that has been proven effective.
Your cancer is different.  Treatment should be custom tailored to your unique circumstances.  When a breakthrough that provides hope for millions of women is available, it won’t be advertised with headline teasers about a celebrity appearance on a popular TV show.  It will be a quiet scientist who publishes a research paper that will hit one of my medical feeds and go viral.

Thank you for the good folks at Is My Cancer Different for asking me to share my thoughts about the FACT that breast cancer is many diseases and one (treatment) size does not fit all.  It's an important message.




Wednesday, December 14, 2011

CHEMOBRAIN RADSBRAIN CURE.IT.ALREADY.BRAIN

One of my medical news feeds comes from Medical News Today.  Just like so many of the breast cancer "foundations" have similar names, a bunch of these publications sound alike.  For me, everything is starting to turn into what you might see in a jello bowl (IF you are old enough to have actually boiled the water and mixed the jello rather than buying those 6 packs).  Everything is swirling together.  The journals, the organizations and whateverthehellelse... it's a swirl of colors some of them are more prominent than others.  Pink seems to dominate the damn bowl.  Whatever....

Today's treat adds radiation to the "cognitive" list and IF I'm reading correctly, may even call tamoxifen out and shove its role to the sidelines with the defensive line while the offense is on the field (with Eli Manning?) scrambling for that "Hail Mary" pass.  Can't be relied upon to provide accurate information, prefer all to read and get their own "take away" from the article.  I reprint lots of this stuff because I don't know which websites require login information and although all of the sites I use are free, I believe in making life as simple as possible for the people who are sharing time with me.

I'm pretty sure the next person who tells me, "I just don't see it?" is going to have the pleasure of explaining how pepper spray from a pink canister feels in their eyes.  Just fantasizin' out loud.....


From MNT-Some new information.  Or, some fairly recently information that's newly publicized.....  

Cognitive Problems Still Evident Several Years After Breast Cancer Treatment
Main Category: Breast Cancer
Also Included In: Neurology / Neuroscience
Article Date: 13 Dec 2011 - 3:00 PST

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Current Article Ratings:

Patient / Public:5 stars
5 (1 votes)
Healthcare Prof:not yet rated

A new analysis has found that breast cancersurvivors may experience problems with certain mental abilities several years after treatment, regardless of whether they were treated with chemotherapy plus radiation or radiation only. Published early online inCANCER, a peer-reviewed journal of the American Cancer Society, the study indicates that there may be common and treatment-specific ways that cancertherapies negatively affect cancer survivors' mental abilities. 

Previous research suggests that chemotherapy can cause problems with memory and concentration in breast cancer survivors. To compare the effects of different types of cancer treatment on such mental abilities, Paul Jacobsen, PhD, of the Moffitt Cancer Center and Research Institute in Tampa, and his colleagues examined 62 breast cancer patients treated with chemotherapy plus radiation, 67 patients treated with radiation only, and 184 women with no history of cancer. Study participants completed neuropsychological assessments six months after completing treatment and again 36 months later, which is further out from the end of treatment than most previous studies of this type. 

The study confirmed that chemotherapy can cause cognitive problems in breast cancer survivors that persist for three years after they finish treatment. In addition, the investigators found that breast cancer survivors who had been treated with radiation (and not chemotherapy) often experienced problems similar to those in breast cancer survivors treated with both chemotherapy and radiation. They did not find that hormonal therapy (such as tamoxifen) caused cognitive difficulties. 

"These findings suggest that the problems some breast cancer survivors have with their mental abilities are not due just to the administration of chemotherapy," said Dr. Jacobsen. "Our findings also provide a more complete picture of the impact of cancer treatment on mental abilities than studies that did not follow patients as long or look at mental abilities in breast cancer survivors who had not been treated with chemotherapy," he added. 

Tuesday, December 13, 2011

YOU CAN'T MAKE THIS SH*T UP!

I KNOW we are long since done with the list of the stupidest items bearing the pink ribbon, but last week I was getting gas and when I walked into the store to grab a bottle of water, I could not stop laughing.  The guy behind the counter was ready to call those people with the funny jackets.  I could see it in his eyes.  It would have taken far too long for me to tell him the story.

Here?  This requires no story.  I think this qualifies as the Official Most Stupid Item of 2011.  Unless, of course, the pepper spray has some magic power and it has the power to obliterate cancer cells.  After all, I'd sooner smack down a hairy, scary stranger in a dark alley.  That scary stranger is a piece of cake.  This sneaky cancer stuff?  Not too much.

FYI-This cost $10.00.  I have no clue how much money is going anywhere but I figure every woman should have some form of defense.  It was a "need purchase" ... not a "pink purchase."

Maybe I will use it on the next person who tells me, "You got a good cancer!"  or, my most favorite, "Wow, a free boob job!!"  I wonder if the pepper spray burns as much as those damn chemo drugs did when they were dripping into my vein?

(There is a comment below from one of the brilliant bloggers.  In case it doesn't come up as a link in the comment box, her post can be read here..... this stuff is important...... billions of pink ribbon bucks and we MUST be AWARE)

Monday, December 12, 2011

I'LL HAVE WHAT SHE'S HAVING ....

ORIGINALLY TITLED:  "ENGAGING THE BRAIN OF A WOMAN"

My initial thought when I began typing was to start with: "I have just have two questions" but as I began typing, my brain did its usual zig zag and began going into its usual sophomorically silly places.  I just went with it.

  • If the study was an fMRI, did they build a special machine to accommodate two people
  • If a normal MRI machine was used, were the parties just waif thin
  • Maybe it was an open MRI
  • Or, was it a "solo act"
  • If it was a solo act, were there toys involved
  • If toys were involved, were they checked for metal (there is a scene in Toy Story 3 depicting metal being removed from a trash heap)
  • Now that I said THAT, I will never be able to watch Toy Story 3 with my nieces and nephews again
  • Who was at the MRI controls in that room with the microphone (man, woman, both?)
  • Were their eyes only on the brain activity or were they watching the whole show
  • IF they were watching the show and they were of opposite sex, did the control room turn into a sideshow of its own
I felt a bit voyeuristic when reading this study but let's all remember, ANYTHING that is published with regard to brain activity pops up in my Google feeds.  I DO read them all.  Some of my aforementioned questions are answered in the article.  I skimmed past them the first few times.  Like I said, voyeuristic.  Details weren't important.  In my initial 982 readings, I skimmed.  Hey, I have a hard time grasping facts and there was lots to understand.  And the subject matter was its own distraction,....

What does this have to do with the content of this blog?  Hell, I'm thinking I need to find a way to stay in a perpetual "state" since this brain is definitely firing on all cylinders.

From Medical News today as published on November 20, here goes........ the link may not work without proper login credentials..........And I can't leave anyone hanging with the titillating commentary.  Of COURSE it's an "Editor's Choice, if the editor is a woman, she likely has chemobrain and is trying to figure out her own way to join me in finding a way to keep HER brain in this state.  If the editor is a man, no further speculation re "editor's choice" is necessary, IS it?

Female Orgasm - Brain Activity Captured In FMRI Imaging Device

Editor's Choice
Main Category: Neurology / Neuroscience
Also Included In: Sexual Health / STDs;  Women's Health / Gynecology
Article Date: 20 Nov 2011 - 0:00 PST

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Current Article Ratings:

Patient / Public:4 and a half stars
4.44 (36 votes)
Healthcare Prof:5 stars
4.56 (16 votes)
Article Opinions: 16 posts

Brain activity during a female orgasm has been described as secondary to an epileptic seizure, after researchers from Rutgers University, New Jersey, USA recorded the upsurge of oxygen utilization in a 5-minute period of brain networking activity with a fMRI (functional magnetic resonance imaging) scanner.

The researchers presented their findings at the Society for Neuroscience Annual Meeting, 2011, Washington D.C.

The video footage shows how brain activity develops during the crescendo period, the orgasm itself, and the recovery period. It shows how unrelated brain regions come to life, reach a climax of activity, and then settling back down again.

Lead researcher, Professor Barry Komisaruk, said:


"We're looking at the sequence of brain regions that get recruited at increasing intensity leading up to orgasm. It's such a compelling behavioral and sensory phenomenon with so many implications and so little understanding."


Nan Wise, 54, a sex therapist, who is a Rutgers PhD candidate, reached orgasm by self-stimulation. The researchers explained that every part of her brain was activated when she reached orgasm.

Wise said:


"When I first started grad school in '80s, we didn't have these methods. Now we can study how the brain is recruiting these regions to create the big bang of orgasm. Secondary to an epileptic seizure, there's no bigger brain networking event. It's a fantastic opportunity to examine the connectivity of the brain. Theoretically, it's going be helpful to know how things work. I think the caveat is understanding that sexuality is very complex."


In an interview with The Guardian newspaper, UK, Wise said:


"It's my dissertation. I'm committed
to it."


Prof. Komisaruk said they aim to find out what goes wrong in individuals of both sexes who fail to reach sexual orgasm.

The movie animation - consisting of a series of snapshots taken two seconds apart - shows how 80 different brain regions (40 on each laterality) respond. It uses colors to represent oxygen utilization levels in the brain, displayed on a spectrum from dark red, progressing to orange, yellow and finally white (highest level of activity). When orgasm is reached, nearly the entire brain becomes an illuminated yellow/white.

Female Orgasm in Brodmann Brain Regions


Early on in the movie, one can see that the genital area of the sensory cortex becomes active first - what the researchers say is a response to being touched in the genital area. Then the limbic system comes into action - this part of the brain is involved in long-term memory and emotions.

When the orgasm is about to arrive, the cerebellum and the frontal cortex become much more active - Komisaruk says this is due to muscle tension.

Activity reaches a peak in the hypothalamus during orgasm - oxytocin is released, a pleasure-inducing chemical that makes the uterus contract. The nucleus accumbens, a region in the brain linked to pleasure and reward, also becomes very active.

After the orgasm subsides, so does activity in all the stimulated brain regions.

Komisaruk has developed a technique whereby the individual being scanned can see his/her own brain activity on a monitor, providing neurofeedback. The team aims to help people learn how to alter their brain activity, and perhaps eventually improve their symptoms related to pain,depression and anxiety.

Komisaruk said:


"We're using orgasm as a way of producing pleasure. If we can learn how to activate the pleasure regions of the brain then that could have wider applications."


Written by Christian Nordqvist 
Copyright: Medical News Today 
Not to be reproduced without permission of Medical News Today