FROM JULY 19, 2011 ..... LIFTOFF !!!

And this is how it all began...... and this was posted on July 19, 2011.  It was my way of honoring my dad.  He died five years ago.  Today.  One year ago, this is what appeared in this blog space...... Taking it from the top....From the beginning...... This one's for you, dad.  Your wisdom has been a guiding force that will live on forever..... in me.... in my brothers and sisters..... in my kids and my nieces and nephews.  Your legacy.  Our family.  You taught us well.  I can't fill your shoes but I can follow in your footsteps.  Advocating for others.  I learned from a true giant.  I love you.

July 19, 2011  Let the adventures begin:

I have to come up with a snappy,

Cut you at the knees,

AM's Brain, drifting aimlessly....

Shut up for the simple reason you don’t know what you are talking about….

In fact..... you may be a moron, response. 

It has to be short and sweet, to the point, somewhat biting without seeming biting.

I am tired of people telling me “It’s in your head.”  I am tired of people telling me they understand.  It IS in my head and they DON’T understand.

I feel like those old drug commercials.  I see an egg.  Perfectly shaped without even the hint of a crack.  Whoa.  Now I see it cracked open and sizzling in a frying pan.  My brain was an egg in pretty decent shape.  I’m not a rocket scientist or anything like that but I was quite capable of working a fairly demanding job.  My brain now resembles the egg in the frying pan, particularly as the white part starts to bubble up.  The egg stops the erratic movement when it’s cooked. Similarly, my brain stops jumping all over the place when I’m totally fried, winding down the day-which may or may not have been productive but regardless, I am just as spent.

“This is your brain on drugs.”  Good campaign.  Not too sure it worked then or if it would work now, but the only drugs I take are legal and are prescribed for me.  The big, bad drugs are done.  I was finished with those drugs four years ago.  I am, however far from being done with running to and from one of the many facilities operated by Sloan Kettering in and around the NYC area.  At last count, I have had appointments for one reason or another in at least eight different locations since I jumped on the Cancer Bus.

Most recently, I had an appointment in Manhattan.  Letting people know I would not be around on the day in question, despite the fact that I am a grown woman with adult children, we have come to a point in the instant communication world, where it has become proper etiquette to let certain people in my life know that I will be among the missing for a few hours.  Naturally, this prompted a very insistent, “Why, what for?” from every single person.  New York was in the midst of the first official heatwave of 2011.  My well intentioned family and friends were all compelled to share the weather situation.  I suppose they think I moved into a cave somewhere with no TV, no internet, no iphone and no window or door from which I could actually walk outside and FEEL the heat. 

“I have an appointment,” which of course, is simply not a satisfactory answer.  The weather angle gives them a reason to pry for more information.  I do not want to discuss the reason for my trek with anyone.  If this isn’t bad enough, some of them kinda-sorta begrudge me because they tell me they understand.  And then, they push me to do the very things I just finished explaining cause me huge problems.

And, in the very next breath, I am being told how I am making things worse for myself by just thinking about it or, even better than that, I am being told it will do me good to (insert any idiotic thing) because they just know this (idiotic thing) will be the magic bullet.  Feels very condescending but rather than make any further attempts to explain, I do this mental sarcasm Thank You Kindly Thing.  You know me well enough to also know I have already researched everything I could get my hands on…..  I’ve tried things on my own, implemented ideas I found from people who DO understand and, as of this moment in my life, I have limitations.  Period.  Constantly pushing me toward the very things that fall under “limitations” ….. well, then just stop telling me you understand… or that you are sympathetic.  

Where I was?  The inquisition.  Worn down by the constant follow up line of questioning, I cave in so I can emerge from my aforementioned residential cave and go about the business of my day…. And that presumes I even have “it” to get started after being sidetracked from whatever I was attempting to accomplish prior to the onslaught of questions from the well intentioned.

“I’m going for a neurocognitive evaluation.” I can sense the eye rolling, even if it’s a face to face conversation and an internal eye roll.  I listen to them as they tell me how they can never remember what they walked into a room for or THEY can’t remember names.   I laugh at the self deprecating jokes, “I didn’t have chemo, what’s my excuse?”

I get it.  I’m at THAT age where this is happening to many of us.  Although I quite graciously accept AND VALIDATE their “I do that, too” it damn well pisses me off that most people absolutely refuse to accept my, “Yes, but this is different.”  The persistence upon their insistence they KNOW how to help is starting to get really irritating.  As for any form of validation?  I’m in unchartered territory and I can quite simply, Dream On……

I know where I will find validation.  From others who are experiencing almost identical problems and whose lives are similarly changed, or from one of the small group of very brilliant minds who are researching what is happening or more accurately, no longer happening in my brain.  Some of you know EXACTLY WHAT I MEAN.  And some live with someone like me and have a real hard time understanding it.  Before acceptance, there must be understanding.  Few people have faith so deeply in another human being that they can accept without understanding.  This can, correction, This DOES cause many problems and creates relationship issues with spouses, parents, children, friends….

So we are an isolated bunch….. but I know when I hear or read what someone like me has to say , I can’t describe my feelings (“thank GOD, it’s not ME”…. “There is a reason for this mess”) as they go to those subtleties, the things that have me nodding my head, delighted that someone else is taxing their brain to come up with a fitting description.  Totally in awe of their ability to capture the essence of this…..and thankful, so thankful….. THEY can distinguish the mess in my head from those well intentioned members of the “I do that too, crowd.”  

My life is now in the same two parts used to express calendar years: BC and AD.  My own BC era is Before Chemo, Before Cancer, Breast Cancer.  Pick all, pick one, pick none.  Isn’t it BCE now?  Can you excuse me while I google what is “official” these days because yes, the calendar is of utmost importance at this very moment.  BCE goes with CE and BCE:CE will simply not stay in my head.  And, memory recall of stuff that’s been in my brain for a long time isn’t my problem.  I’m sticking with BC:AD.  What can I call AD?  All Done?  After Drugs?  How about “Anne’s Dumb-days?”  Working on it.  Lucky for me my cancer started with the letter B.  Gives me three things to refer to as BC. 

Hey, shouldn’t things come in threes?  Doesn’t it work better like that?  Let’s see.  Eat Pray Love.  “Things always happen in threes.”  Actually, I did just have proper burials for three dead birds I found in my yard in less than a month.  Somewhere in the recesses of my brain I read movie titles, or was it book titles, or was it both, OR did I just think it and actually believe I saw or heard it.  What was I saying?  Oh yes.  Titles should be three words or less. 

If you can give me another several hours, I will either come up with more “three” explanations or, I will get so damn frustrated, I’ll google every combination of phrases I can think of to support my hypothesis.  And while I'm at it, I better check to see what I have to do to perform an exorcism on my home in case those three dead birds is some sort of spell that was cast on me......Not before, upon opening my browser, I see on my personalized google page a news story with information from the FDA about silicone implants.  It’s as if someone else jumped into my body and will NOT allow me to stick with what I started to do. 

Some evil thing invaded my brain, as I have absolutely no control over the internet detour upon which I am about to embark…. One that will undoubtedly consume a very large chunk of time as one link leads to another and another so I can get to the bottom of this silicone situation.  And my work, all with pretty stringent deadlines every one of which I am acutely aware, just sits untouched.  In fact, if I have a bad enough run, string together a bunch of days in a row like this, I may actually have to blow the dust from the top paper.  And the dusty paper is something government related that MUST be postmarked by 48 hours ago.

But I’m obsessed over this issue with the breast implants.  My “gummy bears” don’t count?  (widely used nickname used for the type of implant I chose for my reconstruction.) That’s a different type of silicone.  PHEW!  Wait, I’m in a clinical trial?  Only 20% of women will have a problem…. OH, that’s for cosmetic surgery implants.  The stats for women with reconstructed breasts - 40-70%?  Mine are in exactly four years.  Odds appear I will be in an operating room at some point in the not distant future.  Is it only “pure silicone gel” or does that include my gummy bears, too?  If the gummies are in a clinical trial, I guess technically, they have no clue just yet.   Where the heck is the search page with the things in threes?

That is a snippet of what happens in my brain.  Sometimes, I’ll jolt back and realize I went off on a tangent that had absolutely no connection whatsoever to my point.  None, Nada, Zip.  See how melodic things sound when they are in threes?  Othertimes, I’ll remember, generally days later, “Hey, I never did get to the point in that conversation….”  Or  “What exactly did I find out about this FDA nonsense?”

I am not the same and I want to function in BC time.  And then I feel like a real ingrate which leads me to beating myself up for being cancer free.  I deserve a beat down with this bitchin' and moanin' over nonsense when so many are in the fights of their lives, FOR their lives.  And, that is not an abstract thought, it’s an In My Face reality as I personally know two women who are Stage 4 Warriors, neither of whom entered my life because our paths crossed in Cancer Land.  I met each of them under random, I know there is a great word that captures exactly how these women came to be a part of my life…DAMN IT….GOT IT… “serendipitous”  circumstances. 

I am approaching the five year mark.  The first significant milestone.  Or is it?  Is it five years from when the surgeon did the biopsy and supposedly got clean margins?  Is it five years from the bilateral mastectomy which was two months after that?  Is it five years from the last chemo?   Oh no, I see another internet detour coming…….

What in the hell was I trying to say anyway?  Give me a sec while I scroll up to read the beginning.  Oh yeah…..I remember now. The snappy answer:

“Thank you so much for the validation.  I can’t tell you how much it means to have you understand that It IS in my head.”

Naaaahhhh.  Too many words.  Will work with that and try to tweak it as time goes by.  In the meantime, I will now be late for my 11AM appointment.  Lost track of the time, forgot to set the alarm on my phone to remind me.  Gotta run.  Promise to tie up all the loose ends as this blog evolves into something, or more realistically, fizzles into cyber-nothingness.

for dad......

July 19, 2012..... I didn't crash and burn into cyber-nothingness.  Sweet Anna, my Visible Ink mentor.... "What is chemobrain and is there an audience?"  I should have her write the story of our first conversation!!

And, for A.... one of those previously mentioned Stage 4 friends who died just at the halfway point between last July and today.  You are part of why I am determined to be heard.  Speaking loudly and in ways that others can hear makes me feel less helpless.  I couldn't do anything to prevent your death but I can surely shine a light on the truth.  For you, for Rachel, for Susan.  For all whose lives were stolen....  And for all who live with the fallout of the "good cancer" .....

I'm not going anywhere..... unless it's to a bikini parade.... TOPLESS... just to make a point.