Friday, September 30, 2011

OFF TO THE RACES

Tis the final day of September.  If I may make a suggestion?  Take a good look around you and notice all the color.  Interestingly or oddly coincidental, I saw a rainbow yesterday evening. Rainbows are not common in suburban NYC.  It was a bit ironic.  ROYGBIV.  Saw every one of them.

By the time this weekend draws to a close, the world as we know it will exist in one color and ONLY one color.  I was really never a fan of pink.  A tad too wishy washy for my taste.  I might suggest shifting your eyes to the background color on your screen.  Now, I ask you..... "Does this look like someone who might like pastel pink?"

Here's the thing, though.  MOST of the people who will be painting the world pink don't understand the way the very people they are "honoring" feel about this situation.  MOST of the people don't understand that we've been at this pink game for so damn long and really, have we made a difference?  Yes.  We are aware about getting screened and we are aware that early detection is the best we have right now.

And No.  We haven't made any strides toward prevention.  Nor have we made any headway with metastatic disease.  Someone very dear to me was diagnosed with a Stage I breast cancer.  Surgery and chemotherapy completed, clean lymph nodes, too and yet, at her first annual screening, bone mets were discovered.  The treatment, which was three months of more poison, did not help.  In fact, the mets are now in every single organ where breast cancer likes to take up residence.  Her latest scans?  Now spots on her liver, on her lungs and tonight, I learned they found 6 or 8 "things" in her brain.  In THREE Months.

I am a survivor.  My mom is a 2 time survivor (and an unrelated renal cancer survivor also).  My sister is a survivor.  My friend will be facing a difficult battle.  This is simply unacceptable.

Prevention IS the cure.  Today, I will be visiting a local Panera Bread cafe where they will be kicking off their "pink bagel" campaign on Long Island.  I am proud to say that Long Island has been at the forefront for many, many years in asking the right question.  WHY?  That is where we need to focus. When we can answer that question, we will be able to fix those who are waiting for the research to catch up to them.  And, we will be able to prevent this in future generations.

I will be respectful and I will be appreciative.  But I will also make sure that the voices of all are heard.  I promise.  I do this for my friend, I do this for my daughter and I do this for all of the people who live beyond this computer screen.

I got your back.  I'll do my best.  That's MY promise.  Pound the pavement and make some noise.... I can't cure anything, but noise?  I can certainly do that.  And I most certainly will.  I will be at a Long Island town event on Saturday evening.  And Sunday?  Belmont Racetrack.  The track where Triple Crown dreams are frequently shattered.  It's been over thirty years since a horse was able to reach the pinnacle of success.  Yet, I remember it being no big deal in the 1970's when three horses where able to achieve such greatness.  We've done the same thing with research.  It's at a standstill.  We need to push past this road block.  We can and we will.

Rock on .......  I already said this in a prior entry.  The world can go pink.  I plan to pain the town red.

Thursday, September 29, 2011

THREE TIMES A CHARM

My baby has been ignored for the past couple of days.  Between gearing up for RAISING MY OWN BRAND OF AWARENESS when the world goes pink and being on a cloud after getting The Email on Friday and another two different but equally thrilling emails, my blog has been neglected.  If my path was still filled with uncertainty, recent events forced me to sit up and take notice already......

THREE email's in a short span of time?  Join me on memory lane, won't you?  It's the very first post. It's Eat Pray Love.  It's everything happens in threes.  It's Lorraine (my yoga LIFELINE) saying if I doubted anything, recent events and activities should clear all the questions from my mind.  It's Carm saying, "Oh AnneMarie," in that soulful manner.  It's Anna's thrilling, "SHUT UP!!!!!!!!!!!!!!!!!!!!" I'm living.  My life.

It seems I am on some sort of a journey and in less than three months, the blog has been both a compass and a light as I head in "Anew Direction" which I DO claim as The Official Name for Chapter III.  I had my life Before Chemo, I Entered Fogginess and bounced for quite a long time.  From fog to AD and back to fog and on a very rare day, I even entered into BC.  Today, I realized I never want to go back to Chapter BC again.  Ever.

I am in Anew Direction and I don't recall when I have felt this passionate about anything.  The funny part is: I'm not even quite sure what that passion is but I know that my life was on one path and I didn't belong on that path.  How did I EVER veer so far from my own truth, from my own identity? There is a line in the SATC movie where Samantha asks how she ever got to a point in her life where she was saying someone else's name a million times more a day than she was saying her own name. I got lost.


It might have been fear, or perhaps a lack of confidence, or maybe I began to question my intelligence, or it could have been that I was insecure about my ability to do ANYTHING.  That's what I recall of the latter part of the BC Chapter.  I beat my head against the wall in sheer frustration for the past three years while I was mostly in Chapter EF.  I think I finally, FINALLY stepped beyond all of that.  I may not be exactly sure where I am heading, but I am certain I am not going backwards. Thank you CHEMOBRAIN for stripping me of my ability to perform.  Thank ME for finally taking a moment to step back so I could be AWARE of those subtle changes that only those of us who know, know.  It sparked a change.


I could live without the chemo and the cancer diagnosis but I'm not looking back.  I'm not in that bright shining aha there is a good side to getting cancer because that is just pure unadulterated horseshit.  There is absolutely NO good side to a cancer diagnosis.  There is nothing pleasant about being cut, poisoned and additionally for some, burned.  I didn't have radiation so my burns are self inflicted and I do that very well, indeed, but medical burning wasn't on my particular roster of "How To Lose Cancer In Three Easy Steps."

And it's not because I stared down the barrel of the cancer gun I think that I simply must embrace life because it's just so precious when you realize, "Holy Shit, I'm a cancer patient."  On behalf of the sisterhood, I'd like to give a shout out to everyone who has ever thought "breast cancer is a good cancer."  Not really and it doesn't really go away either, just saying......Does a diabetic ever get to say they don't have diabetes?  I think not.  I see my scars.  Every Day.  Diabetics are very careful about their diet.  I feel the implants.  They are by no means uncomfortable.  They are just foreign. Diabetics stick themselves to check blood sugar levels.  Is it normal to deliberately draw blood every day?  It's not the same, but yes, it is the same.  Both not curable.  Yet.


I love life but my life is changed.  I suffer anxiety when I have a million doctor appointments (like now). Truthfully, that anxiety is not such a big deal anymore but jeez... FIVE appointments in one month?  Entering a cancer facility as a breast cancer survivor during the month of October is shitty. I feel guilty when I see the women with no eyelashes.  I feel guilty when I see how frail some of the people look.  I feel guilty if someone begins chatting with me and they aren't part of The Club.  They are someone's cancer buddy and they are waiting for their pal to emerge from the MRI suite.  And as we part company, they say, "God bless you, you will be in my prayers."  I FEEL REALLY GUILTY about that one.  I don't need those prayers.  I think, "Please don't waste them on me.  Look around this room.  There are some really sick people in here.  Please... devote your energy and your prayers toward them."

I really have no idea where I am going with this train of thought.  I think I may want to state very publicly the I am acutely aware that, despite what has been a messy time and despite what I thought to be a series of really shitty "life change units" (google it) .... actually, there were a whole mess of really shitty life change units... despite all of it, I am grateful for what I can do, for how far I've come and for how quickly things seem to have taken some shape.

I still don't know exactly what "that" is, but I'm doing it.  Following what calls me.  Finding my voice. And each day, especially this month when we are all supposed to be raising awareness.  I'm raising awareness the right way, the only way.  By being the voice of truth and the voice of change.  It's not about pink ribbons, it's not about 5K races, it's about a disease-a disease that will take the lives of far too many women this year.  And, that disgraces me.  The Survivor.  Yeah, life ain't fair.  But some things are just not right.

Two Percent????  Let me be crazy and say FIVE Percent....  Either way?  That ain't right.  Period.
  

Wednesday, September 28, 2011

"All right, Mr. De Mille, I'm ready for my closeup"

I received the email late Friday afternoon.  Walked around in a state of total disbelief and then alternatively was jumping around like a child.  That pretty much consumed Saturday and Sunday.  On Monday, it was "Decide what to wear day."


And yesterday, I was sitting in the ABC News Now studios in a makeup room getting ready for my close up!  Dr. Love was being interviewed for a piece about Army of Women and the producer wanted a "survivor" to participate in the interview.  And, that is how I am still shaking my head in disbelief!


It's a short piece, I know I spoke.  I know it wasn't gibberish.  I believe I answered just a question or two and who knows what may hit the cutting room floor.  It was a "live to tape" piece so it was official, "Lights! Camera! Action!"


I remember Dr. Love using a phrase I have come to love.  It describes the complacency that seems to have attached to breast cancer research.  "We are the victims of our own success."  I believe I was asked something about pink and I believe I said something about being very appreciative but that buried underneath that pink are 40,000 lives that will be lost this year.  I remember asking Dr. Love to clarify that my information was correct and how that number hasn't changed in however many years (20?).


I couldn't tell you what the hell the rest of the sentence was...... the only thing I can say is that the producer and Dr. Love's very wonderful assistant were watching on the TV monitor and they seemed very pleased with the results.


I'll see it when you see it and as of now, I have NO clue when and where.


The only thing I can share for certain?  Dr. Susan Love is an enthusiastic, charming, brilliant woman who WILL change the face of this disease.  Yes, she wants a cure.  But, really, she wants answers. Because for her, prevention is the ultimate cure.  She knows that the treatment we endure to keep the disease at bay comes at a price.  For some of us, it's a small price and for others, it's far more difficult.  And for her, nothing about this disease is okay.  She is determined and so am I.


Clearly, I'm still off in a cloud somewhere.  Color me speechless and that, my friends, NEVER happens.

Tuesday, September 27, 2011

SURVIVING AND CURED ARE NOT INTERCHANGEABLE WORDS


Sufficiently Aware.  We are sufficiently aware.  Yes, indeed.

Each day I try to read through the blogs as new entries are posted.  This is why the list remains on my page.  That little list rearranges itself to keep the blogs with newest entries on top.  It’s a chemobrain thing.  This list is for me and if anyone is using the list, I am encouraging you to use the list like I do.  When I get to one of the listed blogs, I click on their blog roles.  Sometimes, I remember to add the new ones to my list.  Mostly, I must say, I DO NOT.

It’s distracted brain…….it’s something I have tried to “fix.”  No success yet but I DO try.  My next attempt?  The blinders they use on horses and a pair of noise cancelling ear buds with the sound of only a ticking clock.  I generally hate ticking clocks but for whatever reason, I can sit in silence listening to the wall clock in the room where I sit when I’m reading or typing.  It’s as if this tic tock is keeping me in some sort of rhythmic motion.  Distracted, but still…. I’m not catatonic in the midst of chaos.

The blogs are inspiring and educational.  They are witty and sometimes quite serious.  They are packed with information and there is a sisterhood.  I’ve become attached to so many and on some days, my heart is shattered with sadness.  I want to fix the world.  I don’t like the idea of “bad things happening to good people.”  Every one of my new friends has their own story to share and I love the connection I feel when I learn something new about a blogger (or a tweep and just remember, I am still the dim-dumb twit in THAT arena).

Is there any point to this?  Somewhat.  Yesterday, I learned something from Nancy.   This week is National Hereditary Breast and Ovarian Cancer Awareness Week.   And on Wednesday, in the middle of the awareness maelstrom of THIS particular week, is “National Previvor Day.”

As I read Nancy’s blog, I realized something.  When asked, I will openly share my store to anyone who asks but until Nancy put those words in black and white on her blog, I don't think I had an honest grasp of the concept.  I am a “survivor” of a family cluster of disease.  Although both of my BRCA genes have mutations, they are of unknown significance.  And my mom has no mutations at all.   One of my sisters matched one of mine.  On the genetics front, it certainly seems like my family cluster could be the mutation they have not yet identified.   I have two sisters.  In four first degree relatives, we have what amounts to five breast cancer diagnosis’?

And your point would be?  I am marking this coming Wednesday because a label has been placed upon my daughter and my nieces.  They are previvors.  September 28 is their day.  I don’t WANT them to have a day.  And it IS just that simple.  And, I don’t want my blog sisters or my tweeps to have their day on October 13 when we “raise awareness” for those living with metastatic disease.  The metavivors.

This year, when we look into the sea of pink or walk into someone proudly wearing a pink ribbon pin we DO need to raise awareness.  The battle cry of the awareness campaign needs to change.  THIS is what WE need to do for all of the KIND & SELFLESS people who support us by walking and bowling and spinning.  We need to make them aware.  They are doing this for US and I'm sure it wouldn't offend a single person sporting a pin or tying up a pair of sneakers.  I suggest our mantra for October should be in line with the whole concept of raising awareness.  I suggest we should be shouting from the rooftops:

ARE YOU AWARE THERE IS NO CURE FOR BREAST CANCER???????

After all, the truth doesn't lie and the truth is buried beneath a pile of pink.

Monday, September 26, 2011

WHICH WAY IS UP

I can see the tips of the pink trying to poke their way through the teal.  It’s almost time.  We are rapidly approaching what will soon become a global epidemic of pink.  It’s already begun and soon, we will not be able to look in any direction on any corner of the planet without seeing pink.  Lots of pink.  All different shades of pink.  Pink Pink Everywhere.

They will soon see it from the International Space Station. I know it. Rather than the beautiful image of the swirly blue oceans, they, too will be looking at the world through those rose colored lenses, even from way up there.  And no, I am NOT going on the Wiki hunt so I may satisfy all of the useless questions jumping in and out of my head.  How the hell far up there is that thing anyway?  Are there any (insert proper country)…..nauts up there or have they all returned to David Bowie’s reworked for Breast Cancer, “Planet Earth is Pink and I don’t know what to think…..”  And, where did that satellite fall last week anyway??

First of all, I’d really like someone to tell me exactly what happened to the month of September.  When I last looked, I was pretty upset to bid farewell to my friend, summer.  Now, it’s almost October??  Christmas will be crashing right into me and then time will come to a screeching halt.  Until mid May.  I can’t spend almost half of the year disgusted due to the climate.  Hanging on in quiet desperation, in the words of PINK Floyd, I WILL miss the starting gun.

Global warming isn’t going to turn NY into a tropical zone nor is anything else going to change in any other aspect of my current life.  What will change?  Me!  I’ve already taken giant steps away from the BC world in which I lived.   Numbers have been replaced with words and dry accounting reports have been replaced by research studies.  My life is drastically different today than it was just three short months ago.

Although I have continued to bounce in and out of the fog era, I feel like I’m finally on firm ground.  I may truly stay in AD minus the bouncing between "bases" "eras" "periods."  I can't decide how to refer to the three parts of my life and I’m still struggling for words to capture the way I am finally beginning to feel about Life, Phase 3.


And then, if I'm having a "moment," thoughts just pop into my head and sometimes, those thoughts can take my breath away.  I know exactly where I am.  At long last, I am seven years beyond the broken mirror and my feet are pointing me where I need to be.  I AM Breathless!  I’m moving toward becoming the person I might have been.  I am emerging from the chaos that precedes all great change.  Great changes are on the way!

Grammatically atrocious, but aptly poetic……

ANEW   DIRECTION

Friday, September 23, 2011

WE NEED YOU!!!!


Surely I can't be the only one who remembers that poster:  WE NEED YOU!!!!  




Army of Women has a video of me on their website and I am very proud to be supporting the efforts of Dr. Susan Love in her goal of getting One Million Women to sign on.  The other video is an indoor thing and I am more comfy outside.  Beside that, I happen to LOVE that bougainvillea in the upper left corner.  It WILL not survive the NY winter, even though it survived Irene and the apparent tornado that touched down right at my geographic coordinates.  I will once again, bring it indoors very shortly.  And I will hope for the best...... HOPE.  It's the stuff of life, right?


Happy Friday......


I suddenly find myself happily busy with a whole bunch of things.  Everything at once which is not necessarily the best situation for the ADD/OCD CB AM, but, I'm going to do my best.  I made promises and the promise I absolutely must keep is the one I made to myself.  And it's almost October which means I'm jumping on the Pink Bandwagon to Paint the Town Red.


I'm determined to make a difference.  For what I went through, for what my mom went through, for my sisters, absolutely for my daughter, for one extra special person who needs to know there are people rallied behind her, for another who helped me change the course of my life with the roadrunner and the coyote and for several very special sisters.


Hope if you are not signed on, that you will be now.  I just shaved at least 30 seconds off the time by providing a link directly to the information portion of the page.  Go For It.  C'mon.  You aren't obligated to anything.

Thursday, September 22, 2011

140 CHARACTERS AND FRIENDSHIPS ARE FORMED!

I am the wordy one.  I can not, under any circumstances, make a point quickly and succinctly. Indeed, I am in absolute awe when I read the blogs and the twitter feed.

In fact, I have many blogs to add to my list.  I don't want to take the list down because it's my own reminder to check in on my new friends.  From their blogs, I go to others and then forget to add the "others" to my list. IF you happen to be reading my ramblings and you are blogging, too, please shoot me a message.

Like my list of VIP's from my surgery recollection entry, the blog list is mostly exclusive.  (Exclusive as in, more people are excluded and I need to fix that!)  It needs to be adjusted.  And my brain, for this moment, is disorganized.  I'm working very hard on reorganization.  It's like a Chapter 11 thing when some big company files for bankruptcy.   

The point?  Read the title again.  How is it possible that social media can forge such a connection among people, many of whom will never meet in the "brick & mortar" world?  I don't know the answer to that, but my first step into online support was in 2002.  I believe that likely makes me a "pioneer" as I am still in contact with a core group of women who have seen me through not only breast cancer, but some of the darkest days of my life.  For almost ten years.  And, we are still all together.  And, mostly, we've never met or even spoken on the phone.  We were together long before Skype or Google+ or OMG, Facebook.  And we still communicate via a keyboard.  And they have been my lifeline.

Is it possible to "love" people who have come to into your life through a computer screen?  I would have to say the answer is absolutely, yes.  No facade exists when the communication relies on putting pen to paper (or fingers to keyboard).  You simply have to be real or it's a waste of time. And, in that spirit, I want to devote today's entry, to whomever may be reading it, to my my very first "twitter friend" as she embarks on the next stage of her journey toward The Next Chapter. Reclaiming her body and moving forward.

This is for you, Chemo_Babe, for embracing me into your world with open arms.  I've been thinking about you all week and most especially, today.  I hope to see update tweets from someone.  I wish you a speedy recovery!

With Love,

AnneMarie


PS to Marie:  I'm working on the patent ;)  

Wednesday, September 21, 2011

A NEW DAY

I don't want to create panic or pandemonium.  I am NOT a doctor nor have I pretended to know anything about really much of anything other than what is happening in my life.  And, in my brain.
Or NOT.


I'm not trying to be the Orson Welles of the internet generation by duplicating what happened with a little radio broadcast on October 30, 1938.


(I wonder if Orson was attracted to the work of H.G. because their surnames are so similar..... sorry, folks.... prior foundation already in place under the category of "these are the stupid things that I become obsessed with for no apparent reason")  And, before that turns into one of my infamous internet detours, wherein I will waste several hours to garner MORE bits to add to my font of already useless information, I AM fighting CB for control of MY brain.  And I intend to win.


There is an element of this chemobrain thing that, at times, causes just a teeny bit of distress. STRESSING here (No!  Not THAT stress-the stress that means "emphasis"), the words A TEENY BIT because this is just me thinking aloud.  Months back when I was on that Cancer Connect call, a question was asked during the Q&A that had never even entered my mind.  I don't remember the answer.  I tend to think it was a "we can't be sure" type response.  I will go listen again but I'm just throwing out a fear here.  Not a BIG debilitating fear, just one of those occasional back of the mind things that hits the forefront every so often.  Primarily when my CB allows it to travel on a pathway so I can remember.


The question was about the long term, late term and will they every go away term effects/affects of chemobrain.  Tim Ahles answered the question.  I remember who answered, no clue what he actually said.  The question was regarding a potential connection between THIS and dementia &/or Alzheimers.  It doesn't much matter exactly what was asked nor does it matter precisely how it was answered.


A thought was planted in my head.  Go ahead.  Do that little experiment with which we've all been challenged.  Think of an object or an animal.  Think of a roadrunner.  (I did see one up close and personal in Arizona back in February and it didn't run, there may be a picture on my phone-allow me to upload it)
Yes, it's a lousy exposure, but it's a real coyote and it was taken with my phone which I was supposed to have surrendered and I was in a no photo zone.  Sometimes, ya gotta do what you ain't supposed to do.

(should have fixed the caption, it's not a coyote, but my brain connects things together and does NOT let go. THESE are the subtleties of CB, the things that make people say, "I just don't SEE IT, you are fine."  No, I'm not because I did not make mistakes like this BC where it required in excess of ten read throughs to see the error.) 

And for the record, the internet detour I avoided about Welles v. Wells?  Ummm yeah, pretty much totally useless as I spent an hour figuring out how to upload the photo from my macbook.  I COULD have climbed the stairs (good weight bearing exercise, too) and just done it from the familiarity of my windows PC.  BUT NO, I was OBSESSED with figuring it out.  Windows won.  I did get the weight bearing exercise into the equation, still have no clue how to move the pictures around on the Macbook and maybe, in addition to "Twitter for Dummies" someone might provide me with "Mac for Dummies" too?  One hour wasted.  

Clearly, I am back in all my chemobrain glory.  It is A New Day* (annotation below).  My focus may have shifted.  My awareness may be more finely tuned.  My brain?  Same funny stuff.  And yes, it's mostly funny.  Or, I'd be in a ball somewhere.  Been there, done that and dispensed with the grief portion of the program (for now at least).  Take a trip down memory lane with me to the September 19th entry to see where the grief has been poured.

The thing is, to get back to the point I am trying to make so damn desperately, stop thinking about the coyote (ahem... roadrunner).  Just put it out of your head.  I dare you.  And I challenge anyone who claims to be successful in keeping it out of their head.  It may not be "right there" but the image will pop in and out for certain amount of time.

And so it is with the dementia question that was asked on that CancerConnect call.  Several of the medical things I have been reading about brain mapping and studies on the possibility of physical damage to "white matter" done by certain chemotherapy drugs can be a tad unnerving.  In certain medical articles, they reference the same area of the brain being affected as they see with Alzheimer's.  OK, so stop freaking.  I have.  First, it seems unlikely and second, if it happens, it's out of my hands.  I'm banking on the research to catch up to it if this ever so remote thought pans out the wrong way.  

Have you successfully kept that coyote* out of your head?  You will.  Likely within hours.  Just like I keep Alzheimer's and dementia out of my head.  And then, I see things and it's there again.  Some of the things are about research and the research that helps understand any part of the brain has the potential to trickle down and help with all sorts of other problems associated with the brain.  Seeing promising research makes me smile.

Two final thoughts.  First, every time you think of a coyote, I hope you will think of me and smile. And, when you think of a roadrunner, I hope you will laugh hysterically at the mess I made here with those two animals..... (I did see a coyote, too... but they are damn dangerous, very quick and I wouldn't even attempt a photo....just saying...)

And second, I've been on a musical journey while I was in my Several Days of Grief.  I have been in every genre and have spanned FIVE entire decades.  The new fist pumping stuff gets me jumping. And so does the old rock (the days a joint was smoked for fun and not to combat the side effects of the chemo that f*d with my brain).  And so does all the music in between.

A most honorable mention to a Grateful Dead song (I should have been chasing them around the country with my brother back in the day.... )
Got two reasons why I cry away each lonely night
The first one's named sweet anne marie, and she's my heart's delight

First of all, that is precisely the way my name appears on my birth certificate.  With an "e" and a "space." Second of all, this is what happens when one becomes a "Friend Of The Devil."  (song title, don't read into that too deeply either if you happen to have any intimate familiarity with my life, sometimes, a song is just a song and a joke is just a joke.... and sometimes, it's not... )  And, by the way, those lighters in the air for "New York     New York     New York"...... my brother can share first hand (or you may do the google hunt)-those lighters were first raised in the air at the Grateful Dead concerts back in the day.  How or why the lighters in the air matter?  No clue.  Just more from The Font.

Musically speaking, I do know this.  Somewhere, someone is getting everything tonight while I'm on the edge of glory.  I did also learn that every silver lining has a touch of grey and I WILL get by, I will survive.  It's gonna be a new day, the stars have played their part, the past is gone and done, take time to think it out, the best is yet to come.


Pitbull, etal.                Give Me Everything
Lady Gaga                  Duh, Duh, Double Duh (actually, duh cubed)
Grateful Dead             Touch of Grey
Basia                         New Day For You




ps-apologies for the color coding to identify my songs. I haven't quite figured out the art of inserting a footnote directly from the post box rather than my usual mode of using ms word (for mac) and then pasting here.  in other words, you can add "HTML for Dummies" to the book list.

Tuesday, September 20, 2011

HAPPY BIRTHDAY LITTLE BLOG

Yesterday, my blog turned two months old.  It's my "baby." Since the ages of babies are always marked in months.... or even half months, I did want to wish the blog a happy birthday.  I'm also the newbie in the twitter community of breast cancer survivors and patients and caregivers.  I'm the baby twit.  I'm taking baby steps but it sure feels like I took a giant leap in a short time.


It's a whole new me.  And there will be no looking back.  My late onset wave of grief (which is like the later onset cognition issues) was validated by a wonderful doctor who is an active part of the twitter community.  This is the wonder of the internet and how a circle of strangers can become like family.  I, the very wordy one, in 140 characters (including spaces) said to no one in particular that it was a painful day as I was re-living five years ago.  Dr. Attai, a prominent California breast surgeon responded to the tweet:
It has to come out sometime. Often it is later than you expect, and then it seems so much worse & unexpected. You'll be ok
She was not the only one who responded.  Several of my sister survivors who happened to be online at the time sent me words of encouragement.  Sometimes, ya just don't feel like talking.  Even ME. But, I didn't really feel like being alone with these feelings either.  Their words got me through a dark moment.  I think it's easier to really listen when we are using our eyes rather than our ears. You will have to digest those words with your eyes.  Think about it, get back to me.  I think it makes lots of sense.


Validation is so important.  It's what makes me realize I'm not completely crazy.  I'm pretty sure I would have been beating myself up today if not for those words.  And then, I took the time to reflect upon all of the events that unfolded in my life in the past five years.  I was on "auto pilot" so of course, I didn't take the time to grieve.  There was no time for grief.  I was simply too busy.  Today, I am acutely aware of staying centered.


I am also very much aware of my limitations and I, through conversations with others in these two short months, realize what's in my head is in the heads of plenty of other women.  We need to get a better conversation started so things can change.


There are things that happen when you become a "survivor" and the whole concept has been largely ignored.  Chemobrain is just one thing that affects an unknown number of people.  Journeying through life as a cancer survivor is another thing that is being ignored.  The treatment may be over, but it's not over for the survivor.  We are still living with a disease.  It's not a chronic condition as some would have us believe.  It's an INCURABLE disease until it's not.  You can ask my mom how she felt for twenty years every time she had to go for a mammography.  I'm sure you can ask ANY breast cancer patient how she feels around mammography time.  You can ask my friend Marie.


Survivors are "victims of success" in the words of Dr. Len's article on the American Cancer Society website.  It's time we are all on the same page.  For all cancer patients, no words mean more than to be able to say "I am a survivor!"  But, dismissing the reality that is "survivorship"..... just read on and form your own opinions.  You can get back to me on this, too.






They sound like pretty convincing fighting words if ya' ask me.....






Monday, September 19, 2011

LEAVING THE PAST BEHIND

It’s been five years.  Today.  No day has affected me more than the 19th of September, 2006.  Not the days my kids were born, not any stupid anniversary of anything having to do with anyone else either.  This day is about me.  It’s about my life.  It’s about choices.  It’s about fear.  It’s about sadness.  It’s about an education that could fill two lifetimes.  It’s about learning to self-advocate.  It’s about understanding that “solutions create problems.” And, it’s about finally embracing whole-heartedly it’s OK to have a day All About Me.  It’s okay if every day is About Me, my dreams, my desires, the life I wish to live.  I earned the right.

Kids, I love you (but we’ve already determined neither of you is reading this anyway, so no matter and besides, you already know I will stand behind you unconditionally and if I could, I would move mountains for each of you); mom-I LOVE YOU for paving a path in 1988 when chemotherapy was even more barbaric than it is today and I am appreciative beyond words that your struggles made my journey much easier than yours.  You did spare me.  Your experiences taught the researchers how to make things FAR less unpleasant for me.


Dad, I miss you and I am remembering that I made you the messenger when I first set foot into this mess.  And I remember the email you wrote to me the day you stood in that room right by my side so we all heard those words in the very same instant.  That letter is in a frame.  I know you are holding my hand through this journey.

And Linda.  You didn’t even get two months of playing The C Card before you were forced to share your limelight with me.  I will never forget how you left work one Thursday morning five months prior to my surgery and three months prior to my diagnosis simply because I was freaked out about bringing films to a surgeon for review.  Only two of you knew what was going on at the time.  Only one of you remained by my side for the long haul.  And that very same one of you was the single most instrumental person it helping me past my hang-ups.  And that same one of you got me off the ledge when my confidence was shattered and my body image was (self) decimated. 

That is by no means an all inclusive list.  Indeed, it’s primarily a Mostly Excluded List.  My entire family rallied by my side.  Paraphrasing Lada Gaga in her Howard Stern interview, “We are Italian.”  We are good at the jump in at the first sign of a crisis.  I’m not being slanted towards my ethinicity to the exclusion of others.  I only speak about what I know first hand.  My Jewish friends, Greek friends and pretty much any other group from any other ethnic background have all shared similar experiences in moments of “family crisis.”  Italians and Italian Americans are great hand wringers.  Just sayin……

I digress.  And gee, there’s a HUGE surprise.  Start out with one goal and in three sentences, I’m all over the charts.  May I suggest going to one of the earlier posts where I likened by brain to a ski mountain in Jackson Hole?  Surely, I impressed at least ONE person with that reference as I’ve already established I HATE the cold and skiing is not my thing.  If I wanted to be obvious, I would have used the very popular Aspen as my point of “ski mountain reference.”  Or, if I wanted to impress an international audience, I may have said, “Chamonix.”  Jackson Hole…. far more obscure, makes ya wonder, “She hates skiing, how is Jackson Hole part of her repertoire?”  While skiing isn’t my thing?  Apr├Ęs ski, definitely a fun time.  Besides, I’m a font of useless information, remember? 

Five years ago, I altered my body.  Five months after I received The Letter advising me of the “density” that was presumed to be nothing but was worthy of another look, I was waiting to be summoned into an operating room.   I have come to realize my short-term memory (more accurately, my working memory, which by the way, IS different from short term memory) has been somewhat uncooperative.  That cloud has produced a rainbow.  My recollection of older episodes in my life has much greater clarity than I recall having in the pre CB days.  There’s an upside to everything.  If you look hard enough.  If you can REMEMBER to look, that is…..

Back at Memorial Hospital, NYC, circa 2006, the opening day of the UN General Assembly that is now inextricably connected to me, to my breast cancer and to the decision I made to have a bilateral mastectomy.  Our brains have weird ways of connecting things.  There are reasons why this UN thing is intertwined with my cancer.  It was (unbeknownst to me at the time) the reason why every hotel room on the entire island of Manhattan was occupied.  No room at the inn.  At any inn.  Just a room in Memorial.  An operating room.  Following by a recovery room.  Followed by a semi-private room with a view of the UN building.

This was the third time I was going to be greeted by the operating room staff in less than 60 days.  I knew the drill.  The pre-op clearance within days of the surgery, the phone calls I could expect the day before, first from the nurse to review all the last minute instructions and then from the scheduling staff so I would know when to arrive.  There is nothing pleasant about waiting for the phone to ring.  I was jumping out of my skin the entire day.

I don’t think I slept the entire night.  I know I had to be up early.  I remember jumping in the shower that morning.  I stood in the shower taking a long look at Me.  My tears were producing far more water than that which was coming from the shower.  And I cried in silence.  This was a personal moment.  It was a moment between me and my body.  And, what would be happening in a few short hours was as a result of a choice.  My choice.  I had clear margins when the surgical biopsy was done.  I also had a diagnosis of invasive lobular breast cancer.

I still have the copy of my pathology report where the surgeon drew the box explaining “clean margins” and then placed little dot marks of ink inside the box.  It was when she said, “The question is how do we know there isn’t a dot over here?” and that dot was OUTSIDE the box that my brain began to engage.  I knew I needed to start thinking outside of the box about how I wanted to proceed with treatment. And that is how I came to find myself at Memorial Hospital on September 19, 2006. 

I don’t recall getting out of the shower.  I don’t recall getting dressed.  I don’t recall the drive.  I don’t recall walking through the underground hallways that connect the garage to the elevator banks.  I remember crying in the shower as I stared at my body.  I remember feeling the soap and the water on my skin.  And the next thing I remember is exiting the elevator to check in on the surgical floor.  Those 90 minutes in between, blocked out.  Gone. 

What happened next is just a jumble of memories.  They are all out of order in my brain.  This, I am sure has nothing whatsoever to do with chemo brain but is a function of being as scared as I have ever been in my entire life.  Fear had me in a chokehold like nothing I could have imagined or anticipated.

I remember changing into what would be my attire for the next several days, The Blue Gown(s).  My belongings were in a hospital tote.  I remember being escorted to the nuclear medicine area to be injected with more radioactive dye for the sentinel node biopsy that would have to be performed on the good breast.  “If something unexpected comes back with the pathology, the only option will be to remove all of the lymph nodes.”  I remember how I wanted to punch the nurse for not being as adept at administering the injection as the nurse a few weeks prior.  In hindsight, I think I judged her far too harshly.  I was a very different patient on this day than I was weeks prior when I was simply have my lymph nodes checked.

I remember how everything was behind schedule that day.  I remember the kindness of the young man who was my tour guide between the surgical area and the labs.  And I remember sitting and sitting and sitting with the blue gown and the blue socks.  I remember seeing Dr. Hot Plastic Surgeon enter the surgical waiting area.  He was looking for me.  Because I had incisions from two prior, recent surgeries, he wanted to provide the breast surgeon with a roadmap.   When he was done making his graffiti marks with a sharpie pen, I officially crossed The Line.  After emerging from the graffiti zone and back to the surgical waiting area, I began to tremble.  I don’t remember anything else during that long wait.

I don’t remember when I was finally called.  I don’t remember walking to the operating room.  I don’t remember those doors separating the hallowed halls within the surgical area.  I don’t remember much of anything upon walking into the OR.  I do remember the nice blue pillow that was on the table the prior two times was not there.  Instead, there was a horseshoe shaped thing upon which to rest my head.  I do remember my mind beginning to race.  “They are going to intubate me to do this.”

Before I had a chance to freak out, everyone began to greet me as if we were going to have some grand party.  These people were simply at work.  I was a visitor to their place of business.  And they were being cordial and kind and wanted to make sure I was properly welcomed.  No less than 10 people were in that room and every one of them greeted me by name.  And the flurry of activity began.  “Blood pressure, cuff, AnneMarie.” “This is sticky and cold, AnneMarie, I’m sorry.” “I’m Dr. Feel Good and I’ll be starting to sedate you shortly.” (Ummmm, yeah… couldn’t we just skip right to that part immediately upon my arrival hours prior??)  And finally, the familiar, “Can you spell your first and last name please?” while my wrist was being examined by another person.  Just checking.  “Date of birth?”  And then, the dreaded, “What is going to be done today, AnneMarie?”  These people are all extremely soothing and wonderfully kind and display compassion and empathy that I’ve yet to witness in any other place.  But STILL.  I don’t know how I politely replied but my brain was screaming, “LOOK AT THE F’ING WHITE BOARD THAT TAKES UP THE ENTIRE WALL-IT’S ALL THERE!!!”

And, then I heard a flurry of activity, “AnneMarie, can you hear me?  You are in the recovery room.  Are you warm enough?”  Nurses.  Possibly the noblest profession on the planet.  The recovery room nurse remained at my bedside and took good care of me.  I was groggy and it was already fairly late.  I don’t think I sustained two consecutive moments of “awake time” for another ten hours.  I remember being wheeled through what felt like gallows.  An underground labyrinth-a bumpy road with wobbling wheels.  I remember being lifted into a bed.  There was an aide who remained at my side in a chair throughout the night.  It was 10PM and no, I did not know where my nipples were.

I remember waking that next morning surrounded by no less than six doctors.  That’s what happens in a teaching hospital.  And, I remember I was not bound.   The doctor gently opened the Velcro on the surgical bra to change the gauze and check the incisions.  Nothing was taped to my skin.  The gauze was loose.  The doctor asked me if I wanted to look.  I just remember staring straight at the ceiling and I remember the tears falling on the pillow.  I didn’t even respond. 

The second round of doctors arrived about an hour later.  Seven AM and six different doctors.  I remember there was a female doctor and I remember she was gently trying to suggest I look at my mutilated body.  And again, the tears fell.  This time, I remember saying, “I can’t.” 

I do believe the next doctor who came into the room, did not arrive with an entourage.  She was soft spoken and she was kind and in reflecting, I think she was sent in for the sole purpose of my psychological well being.  The sooner you look, the easier it is to jump that first hurdle.  I still hear her words, “I think you will be surprised, you should look.”  Through streaming tears, I looked.  I didn’t realize they would begin filling the tissue expanders in the operating room.  Yes, I was surprised I didn’t look like a boy.

But I was more saddened by the loss of what was part of me.  It wasn’t until most recently that I finally came to terms with The New Normal in The New Body.  And it wasn’t until yesterday, that I properly grieved my loss.  I am now and was then, surrounded by a large and loving family.  In that moment, I never felt more lost or more alone.

Yesterday, I finally gave myself permission to FEEL the loss.  Yesterday, when I felt like crying, I didn’t fight the tears because that's what you do when you win The Pink Ribbon.  I cried softly, I sobbed loudly, I screamed, I tried my feel good music, I tried yoga and ultimately, I just had the funeral I never held because, after all, the world has been telling me forEVER that The Pink People are the lucky ones, the strong ones.  Good cancer, mild chemo, how dare I allow anything other than, It's Fine, I'm Fine crack the facade.   

Yesterday, I FELT everything that I have been shoving aside for too long.

Today, it’s five years which is a milestone.

Tomorrow is officially The Next Chapter.



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