GET THE "LED" OUT.....

I think I’m coming to a realization about my life.  I’m aging backwards since my breast cancer diagnosis.  Or maybe it’s been over the course of the past twelve months?  (Personal matters still not ready to share quite so publicly…)  Or it might have begun three years ago when I started to help my sister with my now four year old niece?  Little kids tend to make adults just act silly – or in my case, I act like a downright idiot.

When this began and why it began doesn’t matter.  The only thing that does matter is that this Backward Momentum is just fine with me.  I may be mortifying my late 20-something kids and I am apologizing here and now to both of you, not that either of you is reading this, but I am sorry for being The Mom Who Refuses To Grow Up.  That is an all-encompassing apology and will cover every moronic thing I do From Now, To Infinity And Beyond.  (I have previously apologized for every mistake I believe I made from birth to date and, I paid for the Toy Story toys back in the day, therefore, I get to steal the quotes, too.)

I am beginning to understand the concept of reaching a certain age or coming to a certain point in life where, in my best Clark Gable voice, frankly, I don’t give a damn.  To be perfectly clear, my body most certainly is NOT aging backwards and my brain still functions in the proper decade (ahem, in most areas).  And, because I’ve apparently morphed into Rhett (one “T” or two, frankly, I don't give a damn so I'm not checking right now and I’m not entirely sure I even have his name right and do I really even care? NO.) Butler, I am comfortable and prepared to do what is totally unacceptable to most women.  Admit my real age.

I am 54.  Actually, I will be 55 in less than two months.  November 10, 1956.  Mark your calendars please as I would appreciate proper acknowledgement from total strangers.  Thank you in advance.  It’s “double nickels” (whatever the hell that means…. )  Fifty 5-FU’ing Five.  (I am going to get around to posting up a vocabulary list of my own dictionary, but I think the 5-FU’ing is self explanatory.)

Sounds like it should suck, the age I mean.  It doesn’t.  For the life of me, I don’t understand it.  Fifty sounded positively awful when I was in the latter part of my 40’s.  I spent at least three years dreading fifty.  What a waste of three good years.  If you are in that place with the numbers, do yourself a favor.  Kick back and stop thinking about the number.  It’s just a number.

Why does this matter?  Because I am a fan of all sorts of things that would completely mortify my kids.  And I make no apologies.  I got hooked on Entourage.  I am too 5Fu’ing OLD to watch that show.  But yet, I love it.  Correction.  Loved it.  The series finale aired the other night.  I am completely depressed.  The ending was satisfying, but the ending had everyone on planes to Paris.  A bit unnerving for me but again goes in the category of “personal matter I’m not quite ready to share.”

As long as I am mortifying my kids who have no idea I am mortifying them because they are not reading this anyway......what is up with the obsession with “Hits 1” on my satellite radio?  WTF is that all about??  I have no business fist pumping and dancing behind the wheel of my car to some guy named Pitbull (with a sidekick whose name I can pronounce but not spell despite the fact it is displayed on the radio for me to see) begging me to give him everything tonight.  However, the guy’s voice is kinda haunting and it just gets me jumping.  I had a truck driver pull up beside me at a red light the other day in an attempt to get me to open my window.  Note to truck driver:  I was on my way to get a touch up to cover my GREY HAIR.

It’s taken me all of these years to realize I can be multi faceted.  What a waste of all of the prior years when I felt I had to be “mom” or “wife” or “daughter” or “sister” or “perfect employee” or “whatthef*kever” … to the exclusion of all else.  I am ME.  I am AnneMarie.  And there are many sides of me.  And some of those sides have been squashed for far too many years.

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

I was in the presence of greatness (Dr. Jimmie Holland, just in case curiosity has anyone… and for anyone who was in that twitter chat last night, her name was mentioned by a number of the docs).  It was around a small table of just a dozen people.  I was surrounded by miracles and this very brilliant doctor was seated at the table with the group.  And me.  And this is the beauty of 55.

A few years ago, I would have been intimidated.  I would have felt like I did NOT belong.  I would have felt like I had nothing to contribute to the conversation.   I’m not that person any more.  I sat confidently and damn, it felt great.  Come to think of it, there was a table discussion and it began to get a bit tense for a few moments.  It was a “majority rules” type of thing and two of the people at the table had completely oppositional views.

I made a suggestion.  ME.  And it was The Suggestion That Solved a Silly Problem.  And here I sat being acknowledged and THANKED for a good solution.  By BOTH of the people who were at the polar opposite sides of How Do We Handle This Problem?  I felt like Julia Roberts in “Pretty Woman.”  You know the scene?  She’s in the bathtub and she submerges herself in the bubbles as she shouts, “Holy Shit.”  I was that whore on that night.

We parted company and I got into my car.  Lady Gaga is blasting, I’m fist pumping and singing along to my "feel good" song (Edge of Glory) and two days later I’m sending a text message to one of my kids about the Led Zeppelin song they used to bring Entourage to a conclusion.   I’m an official moron for texting and driving but I did wait for a red light, just saying……

“fyi, entourage, best zeppelin song ever. great choice.”

Now THIS is my music.  Go back to your own damn generation and stop stealing Gaga from the young'uns......  “Goin’ to California” …..and the line that simply MUST rank in the top ten lyrical lines every written:

"Standing on a hill in a mountain of dreams telling myself it’s not as hard as it seems"

And, ya know what?  I’m on the hill and it’s not so hard after all…..

IT MUST BE THE FULL MOON

Today is the beginning of a new week.  This has been an incredibly difficult weekend.  Some of it was very personal and some of it was very public.


Yesterday was the 10th time I watched as we collectively memorialized the events of September 11. That put my emotions in their own "high alert" zone and they were already in an acute state for reasons that are far more personal.


I suspect this is going to be a difficult week.  I am coming upon the five year mark of The Big Surgery.  For whatever reason, it seems to be more painful than it's been in the past.  Is it because these 5 yr, 10 yr marks are somehow more significant?  I don't know.


Today is my Post 9/11 meltdown and my pre surgery anniversary breakdown.  I normally do not write on the weekends but I did share my memories of 2001 in an entry I posted yesterday.


I leave you with that for now.  And I share the words of Tom Junod, the journalist who bravely reported on that which was and still is, a very shrouded memory of 9/11.


When I listened to him in one of the You Tube links, I am still reminded of how many of these thoughts apply not only to the horrors of the choices made by some on 9/11...... but to the struggles of some of our sisters.


they were "pushed to the side"


There exists an "element of exclusion" because they "died improperly" (is there a PROPER way to die?)


and his compassionate voice of reason,


they "should not be excluded........(because) they died in a way that makes us uncomfortable."


And so, I am going to continue to belabor the point.  We can't lose sight of those with metastatic disease.  None of us is cured.  Many of us are survivors, some of us are still in active treatment but we are all in this same lousy club.  And we are in it together.  And we need to support each other.


I'm going to find my irreverent self.  She seems to have gotten lost for the moment but I will return her to her rightful place on these blog pages.


Happy Monday.....

WE PAUSE TO HONOR ALL

Today I pause to remember.  I pause to grieve for the loss of life on 9/11.  I pause to grieve for the lives of their loved ones. 

I remember being in a small grocery store that afternoon.  Bear in mind I do not live in an area with a nearby military base so bumping into uniformed military is unusual.  I was in that store nearly every day.  I will never forget the young man (he was a BOY) who was with his mom.  Dressed in fatigues, he was picking up "food for the road."  I don't know where he was headed but I don't believe I will EVER forget the lump in my throat as I watched the interaction between that mom and her baby.

I recall the nervous wisecracks and the banter between them.  I recall how we all stepped aside insisting this boy place his order and how he sheepishly accepted.  I recall everyone wishing him Godspeed as he was being called to active duty from the reserves.  And, I recall the tears in the eyes of each one of us as we made eye contact with his mom.  I do not know what happened to that boy.  The store has long since closed.

I recall receiving phone calls from the school district.  NO student was allowed to board a bus to go home until a faculty member made contact with a parent or guardian.  EVERY single student in every single school (and I'm sure this happened in most all school districts)..... there would not be even one child potentially going home to an empty house.

I recall the silence in the air when the planes were all grounded.  There is always air traffic in the skies above and from early in the morning, the sky was brilliant blue and eerily silent.  And, I recall sitting up in sheer terror at 3AM because the silence was broken by the sound of a screaming jet.  It was one of the fighter planes protecting us from further harm.


I recall those days right after the attacks.  The first words exchanged among people were no longer, "hello" ..... for weeks, it was always, "Is everyone alright?"  

I recall taking a trip to "Ground Zero" within a month of the attack and I remember that wall.  The wall of photos and letters and flowers and pictures and that wall seemed to go on for blocks and blocks.  And I remember thinking I should choke back my tears.  So powerful was that image, the tears just streamed down my face.  The twisted metal and debris was just a pile of garbage and a construction mess.  That fence represented life.  All lost lives.

I recall for MONTHS after, the reverence with which any remains found were handled.  It could have been a small bone.  All activity stopped.  Every construction worker removed his hard hat.  The remains were carried solemnly and in total silence away from the devastion while everyone who was there stood at attention, hands over their hearts or saluting.

I remember.  And I remember this was an attack on the entire country, not just NYC and not just Washington DC and not just in a field in Pennsylvania.  Indeed, it was an attack on freedom around the globe. 

There are plenty of You Tube videos and a search will yield thousands of results.  I am saddened and horrified when I hear people talking about the jumpers.  It disheartens me to hear anyone even so much as hint (even slightly) that the VICTIMS of the tragedy who took control of their destiny were somehow "diminished" because of their actions.  Those who stayed put were "more heroic" or some other such nonsense.

Stoicism is highly over-f'ing-rated.  Some things get me exceptionally irritated.  People make choices.  And until we walk in anyone else's shoes, judging (or telling someone what they should or should NOT be doing)?  Definitely, not appropriate.  At least not in the Rules I try to incorporate into my life.

"All gave some.  Some gave all."  That is a bumper sticker that bears an FDNY mark.  These first responders are still in harms way.  There has been a recent medical publication about the cancer risk to the firemen who worked to clear The Pile.  It's appropriate to recognize they are looking over their shoulders in the same way many of us looked over ours with the threat of a cancer diagnosis.  Some of them have already passed away and they are no less heroic than those who perished that day.

As for those who took control of their own destiny, while this was not reported on at any great length in this country, it seems the European media did not turn a blind eye.  I commend the foreign media for their commitment to providing the truth.  Sometimes the truth hurts in ways that are unimaginable.  But turning our backs on the truth or becoming like an ostrich doesn't make the truth disappear.  Painful as it may be, I want to make sure NO voice is ever silenced because their message isn't popular enough or because it sullies the picture.  We all matter.

And yes, those last three words are all encompassing... not just for September 11.... but for ALL. 

(If you have the stomach for it, these are two of the you tube videos that are from what I believe to be reliable media sources.)





You Tube WARNING-This is about those who jumped, upsetting to watch


A second you tube video, equally troubling to watch

RUNNING ON EMPTY

I am a stage one invasive lobular cancer survivor.  I don’t know if that is really the stage since, at least in 2006, there was no uniform school of thought on how to stage lobular breast cancer.  I remember very little of what the oncologist said during my consultation.  I relied on my friend’s ears (and whose notes I still have) and my mom’s mouth (to ask the questions).

Very unlike me to relinquish the role of team captain but I was weary by the time I got to the oncologist.  I was at that “just do whatever you want with me” point in the treatment.  I already went through the routine mammo, the follow up sonogram, another follow up for magnified images, dropping the films at Sloan for review, a call from their radiologist whose initial reaction was “repeat in three months” until I told her my mom was a pre-menopausal breast cancer patient, two different "in office" biopsies (including the insertion of titanium clips for all future mammograms so they would immediately see there was “an area of interest” … and I’m wondering if this is this like a person of interest in a criminal investigation?)

And it continues.  A diagnosis of atypia, the consultation with the doctor who would become my breast surgeon, the surgical “gold standard biopsy” (waste of aforementioned titanium clips-surely they can sterilize and reuse them.  Isn’t titanium a rather expensive metal?), a cancer dx, a genetic consultation followed by a blood draw for Myriad Labs (court battle going on about THAT too.  “That” would be Myriad’s “patent” and I am on the fence despite what appears like a monopoly or something.  I think I PREFER if all the data is being handled by one lab.  I see what happens when too many hands get involved… shit ALWAYS falls through the cracks and someone is always thrown under the bus… and for the love of God, who in the hell came up with this Under the Bus thing.  It never existed and suddenly everywhere I turn I’m hearing about someone else being thrown under a bus).

Shall we continue?  An MRI (prior to sentinel node biopsy to make sure there wasn’t anything else “hiding” that might require surgical removal as long as I was going down for the count with the anesthesia), the sentinel node biopsy (and when I saw the miniscule size of the vial that was removed from a lead container resembling a missle large enough to take out a nuclear submarine I was a tad concerned something so well protected was actually getting injected into my body).  FYI, I had that done twice.  Good nurse for first injection, second go round, not so good.  Note to nurses: Have the patient lie down and ask the patient to take a deep breath.  Don’t just jab a needle filled with radioactive shit into the poor girl in the blue gown completely petrified and who is about to have an amputation of her breasts.  Let her at least lie down.  The stuff burns.  OKAY?? 

I’m not quite done yet, so just stay put please.  Getting more surgical results (lymph nodes all clear) but during that appointment I informed the surgeon I wanted a bilateral mastectomy, another appointment with genetics to get the BRCA results (two mutations, both of unknown significance… what a waste of blood), meeting with Dr. VERY Hot Plastic Surgeon who “felt me up” in front of my husband…..   surgery schedule coordinated between Hot Doc and the Breast Surgeon…  

This is a timeline of what occurred between April 21, 2006 and September 13, 2006.  In between all of this, I had a neuroma removed from my foot (remember how important the right shoes are if one might need to conquer the world) and squeezed in my last PRE CANCER vacation.  A family trip to Italy.  Oh, and got pulled over by a cop the day I signed the consent forms for The Big Surgery.  Shout out to the officer who let us go when he saw me sobbing in the front seat of the car.  And yes, a bit of gratitude from my husband for getting to use MY C Card to get out of a speeding ticket might be nice (even five years later).

It was after all of this but before The Big Surgery that I had my oncology consult.  He could have said, “Take her out back and shoot her,” and I would have just asked if I could please be seated in a comfortable chair for the process.  I was THAT exhausted and tired of the blue gowns and the doctors and I hadn’t even BEGUN the good stuff yet.   Have a little patience with me, please.  A cricket got into my house and it’s presently driving me crazy.  I have to scroll up a second.  This chirping is extremely distracting.  And, I think I’ve already make it crystal clear that I don’t perform well with distractions.

Ahhh, yes.  At what stage is my cancer?  We are the three little monkeys sitting in the chairs in front of the man who would soon become someone I trusted more than anyone on the planet.  He spoke, my girlfriend furiously took notes and my mom did her version of the Spanish Inquisition, “What are you going to do to my daughter?”  In 1987-88 her chemo SUCKED.  (No dripping of drugs back then, everything was “pushed”….. several vials of brightly colored poisons….)  She was being protective.  It’s what moms do, right?

I recall asking about the OncoDx test which he felt was unnecessary.  The test was relatively new (I am very good at this needle in the haystack thing) and his feeling was that I would likely return a “mid range” score meaning, “no definitive result.”  Having already wasted blood with Myraid, I was done with that discussion.

He explained how lobular cancer is viewed by the oncology world.  Invasive lobular breast cancer?  The Cliff Note version.  It’s not a lump (that’s ductal and accounts for about 80% of all BC dx).  ILC accounts for about 10% of the breast cancers.  My note taking BEST friend in the whole world described it in a way that’s easiest to understand.  “It’s like someone took a pepper shaker and shook it on her breast.”  There were two schools of thought about how this particular breast cancer should be staged.

The problem with lobular BC is that there is no tumor to measure and this is an important piece of the staging process.  He went on to explain that some doctors believed the size of the largest “pepper speck” should be used to determine tumor size.  Others felt the proper procedure was to add up the sizes of all of these teeny tiny tumors and the sum total is the tumor size for staging purposes.  My doctor explained his feeling was that neither theory was quite right.  He accepted neither and incorporated both theories.

In other words, just like my BRCA test was inconclusive, I wasn’t going to get a concrete answer with this staging issue either.  The NCCN guideline books are inches thick for every single kind of cancer.  And I was not going to have a tumor size to work with here??  I do think I already made my wisecrack about size matters in a prior entry.

What did I walk away with after this appointment?  I have no idea what “stage” I am so I choose the best:  Stage 1.  My chemotherapy regiment of CMF would be eight rounds and it was unlikely I would LOSE MY HAIR (can someone explain how this becomes our worst fear when staring down the barrel of the Cancer Gun?).  And this whole chemotherapy thing (which is how I apparently landed here, blogging and lamenting about my brain which seems to have been left behind in the journey toward survivorship) was about to take a back seat as I prepared for a week long, all out, old fashioned Italian style wake in advance of the Funeral For My Breasts.

    

LIVING IN FEAR AND THE GUILT OF SURVIVING

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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

As we pause to remember and pay respects to the lives lost on September 11, 2001, may we remember, too, our military around the world, those who have given their lives to protect our freedom and those who are still in harms way.  And, as October approaches, let’s remember those of our sisters whose treatment advances are so slight.  They are still in the medical dark ages in comparison to the statistical majority.

On October 13, the single day in the month designated for the Metavivors, let our voices rise as one in solidarity.

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

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

I GOT ME GOIN' IN CIRCLES

Yesterday was just one of those days.  Returning to The Real World after a three day weekend is difficult.  Tuesdays generally suck anyway.  Having Tuesday be "Monday" makes me cringe.  Dealing with a RAINY, cold Tuesday as the start to the work week?  Sucks, exponentially.  Is it more proper to say it exponentially sucks?  Does it really matter??  I made up that whole concept of incorporating exponential into every facet of my life.  I get to make the rules.

I was already down in the dumps over the end of summer and I hate the fact that it was right up in my face.  Rain, torrential, of course, when I had to leave my house.  Temperature at least 20 degrees colder than the day before.  THINKING about the fact that I could not run out in flip flops.  I finally understand how they decided upon the name UGG for the boots I shoved on my feet when I ran out for yoga.  ugggggghhhhh.

Last week, I was so thrilled at my ability to put away all the remnants of Irene.  I was looking forward to getting my office in order in the same efficient manner.  It's still a disaster.  Seven full days later.  And now, my house is upside down again.  It was tidy when I got up yesterday.  By the time 4PM rolled around, it was a disaster area.  Every single room.

What the hell happened?  Did I just give up when I started the day?  Disgusted with the changing season?? Something derailed the day and that pattern is now crystal clear.  The moment "something" happens, I am done.  It could be as silly as a distracting text message and I am the dog chasing its tail.  I don't know how to maintain my focus.  I don't know how to stop myself from a free fall right into the abyss.

It's an out of body experience because I DO watch myself in action.  I catch a glimpse that it's coming.  I see the ADD aspect is about to take control and damn it to hell, I don't understand WHY I let it happen.  Isn't awareness supposed to be the key to this whole thing?  Well, duh, awareness isn't doing a thing to avert "those" days.  I was aware my concentration was slipping.  I was WELL aware I was beginning to leave a trail of "AnneMarie" throughout the entire house as I meandered in circles.  So much for the epiphany of "Awareness is Key."

There is nothing worse than beginning a new day and having to deal with yesterday's mess.  Despite knowing this, I could not motivate myself to straighten up even a little bit.  And so, today is now derailed, too.  Yoga mat is in the middle of the floor-a tripping hazard which may easily land me in the emergency room.  My cell phone is in another room, SOMEWHERE.  Time to grab the laptop and begin the "Find My iPhone" app.  My bag?  Who knows.  Mail?  Still in the mailbox, forgot to bring it in.  And, where the hell are my keys??  I have to get out of here for an appointment in the city.

Ugggghhhh again.  Nothing like driving into Manhattan in the rain and then having to walk the streets IN THE RAIN.

My solution for all of this?  No more three day weekends for me.  If Monday is a holiday, the rest of the world can commence on Tuesday.  I can't pick things up in the middle.  So, my chemo brain sisters, I am going to begin implementing my own rules.  Rule #1:  If Monday is a holiday, then Tuesday through Friday are sick days.

And that, quite simply, is THAT.

Up tomorrow?  IF I can sustain any intelligible thoughts......This blog has gone full circle in less than two months.  In my very first post I made a crack about my gummy bear implants.  They are in the news, front and center with the FDA.  I am officially in the window of "they need to be replaced."  WHATever......    
     

SPREZZATURA

I am sure most of us are familiar with the term, “je ne sais quoi.”  My knowledge of French doesn’t extend much beyond “merci” but I completely understand what one may be trying to convey when I hear, “It just has a certain je ne sais quoi.”

While I understand the point whenever I hear the phrase, quite frankly, I don’t know what the words mean.  After a consultation with google translate, literally (and ironically), the phrase means, “I don’t know what.”  Conceptually, at least in my world, it captures that “I can’t quite put my finger on it,” feeling.  Many heads are nodding in agreement.  It has a nice ring and is very melodious.  It just sounds happy. 

Think about it, though.  While it may sound happy, the real message is one of utter frustration.

Je ne sais quoi sounds like a close relative of a chemobrain word drop except, with the former, the word was never there.  In CB word drop, I had the word, lost the word, retrieved the word (on a very lucky day), substituted a pretty damn close word (on a good day), found a less than satisfactory word (on most days), OR, just threw my arms up in frustration (on the days when my brain couldn’t take any more).

If the frustration overtook me, I might actually walk away from a conversation whereby anyone who may have witnessed such an episode might begin thinking, “Je ne sais quoi the hell that was all about?!!”  They might see the back of my head and they may even add their own visual of one of those cartoon bubbles.  Inside the word bubble?  "What a DOPE."  

Rather than frustration that surrounds IDK (text talk for I Don’t Know), what I really need is sprezzatura.  I LOVE that word.  I love the way it sounds, I love the way it feels when I say it and most of all, I LOVE its essence.

Sprezzatura is an Italian word pronounced, Sprett Sa TOOOR a.  Try not to say “sprett” …..I don’t quite know how to explain this, but let the “R” float in the background in that first syllable.  It’s a fun word.  It also rings and sings.  Its meaning?  It is an ability to hide conscious effort and appear to accomplish difficult actions with casual nonchalance.

Sprezzatura is the epitome of being cool.  As 2011 begins the process of winding down, “cool” is a very uncool word.  Not very sprezzatura-ish.  What is the new way of saying “cool” in the second decade of the 2000’s?  Rad(ical) is old.  Hip?  Again, not feelin’ it.  Dope?  That may work.  It can be a dual purpose word.  It can reside in any portion of my life:  BC:EF:AD.  Dope as in, “I am a damn dope,” because of all of the CB stupidity.  Or, “THAT is dope!” as in: Ain’t Nothin’ Cooler.

Sprezzatura was Ronald Reagan’s response when asked during a debate if he felt he was too old to be president at 73 years of age.  “I am not going to exploit, for political purposes, my opponent's youth and inexperience."  No one laughed harder than his opponent (Walter Mondale, I'll save you the google detour).  It was Mohammed Ali floating like a butterfly into boxing greatness.  It is the oxymoronic advice to “Act Naturally” even if you happen to be in the middle of shit storm of epic proportions. 

Most people use the moments leading up to the stroke of midnight on December 31 as their time to reflect.  Today is my day of reflection.  Today is the official beginning of the new year in the world according to AM.  Summer ends the first Monday in September regardless of what the calendar says about the autumnal equinox.  

I am emerging from what has likely been the most challenging year of my life.  It’s been a decade of challenges that began in the weeks leading up to September 11, it’s been a half decade of challenges that began in the weeks leading up to a surgery that would forever alter my body leaving me physically self conscious and it’s been of year of challenges that completely annihilated any, all and every trace of self confidence and at times had me on the brink, cowering in fear.  One day I may be brave enough to bare all.  I'm not quite there yet, but the past twelve months?  In the hands of Orson Welles, definitely "Rosebud" material.  (Truthfully, War of the Worlds might be a more suitable title..... but I was going for the dramatic effect.... Rosebud?  Far more dramatic...)  

The year is now behind me.  I’ve come far.  And I have far to go.  I’m on a great journey (as I was most recently reminded by a new friend).  Writing has helped, meeting many new people has helped, seeing the places where this blog has been read fulfills me in ways I can’t begin to describe.  So, if you happen to be in the Ukraine or New Zealand or India or any of the other places Google claims to have sent my blog, I thank you.

I have officially exited The Shit Storm and entered into The New Normal.  OH-FICIALLY.  I am looking forward with the anticipation of a wide eyed child on Christmas morning.  I am eager to believe I am going to make a difference in some small way.  No matter what may be lurking around a corner, I am going to heed the words of Rudyard Kipling.  I am going to live with an eye towards sprezzatura because for me, that whole concept has, how shall I say, a certain, je ne sais quoi.

IF…..   

If you can keep your head when all about you

Are losing theirs and blaming it on you;

If you can trust yourself when all men doubt you,

But make allowance for their doubting too:

If you can wait and not be tired by waiting,

Or, being lied about, don't deal in lies,

Or being hated don't give way to hating,

And yet don't look too good, nor talk too wise;

If you can dream---and not make dreams your master;

If you can think---and not make thoughts your aim,

If you can meet with Triumph and Disaster

And treat those two impostors just the same:.

If you can bear to hear the truth you've spoken

Twisted by knaves to make a trap for fools,

Or watch the things you gave your life to, broken,

And stoop and build'em up with worn-out tools;

If you can make one heap of all your winnings

And risk it on one turn of pitch-and-toss,

And lose, and start again at your beginnings,

And never breathe a word about your loss:

If you can force your heart and nerve and sinew

To serve your turn long after they are gone,

And so hold on when there is nothing in you

Except the Will which says to them: "Hold on!"

If you can talk with crowds and keep your virtue,

Or walk with Kings---nor lose the common touch,

If neither foes nor loving friends can hurt you,

If all men count with you, but none too much:

If you can fill the unforgiving minute

With sixty seconds' worth of distance run,

Yours is the Earth and everything that's in it,

And---which is more---you'll be a Man, my son!