GONE FOR THE WEEKEND!!

SEE YOU ON MONDAY!!

EXPONENTIAL IS A GREAT WORD

Somewhere, once again in the recesses of my brain, I remember reading about the time frame in which medical knowledge doubles.  For those without medical issues, liken it to the “money doubles every seven years” adage.  Thanks to the tanking economy and what appears to be the US government on the brink of something horrible, seven years is a distant memory.  I can’t stay with this news story, there are too many numbers so I have to stick with headlines and deadlines.

The headlines: There is a fight between the Republicans and the Democrats.  (I know it’s more than that, but that’s about all I can grasp which I why I turned into a Reality Show Whore-American Idol etc.)  Guessing here but I think we probably all owe China our first born kids (and yes, I am aware of the incentives in China to stop procreating at the current rate).  The plans proposed between the two parties to fix our impending economic implosion/explosion are far closer than it would appear according to the talking heads.

Next week, we are in some gloom and doom crisis if everyone doesn’t get on the same page.  And no, I do not wish to get into a political discussion, I’m trying to find a way to make my point.  Somehow I find myself in a completely unrelated but in an oddly twisted way; I swear this IS related.

When I was on my scavenger hunt to pin down some cold hard facts about the rapid advances in medicine, I stumbled upon some non scientific information.  (Bear with me as numbers are such an issue for me and this is clearly the calculation of someone who still has the BC brain I once had for math):

He always said your money would double every 7 years.  Turns out he was figuring on 10% interest or appreciation.  At 7% your money will double every 10 years.  Add 3% inflation and it’ll double every 18 years.

Since most of us are not earning 7% on our money and more of us are actually being forced to spend the money that should be earning something, then essentially the the rest of us just continue to amass debt.  For me, only one thing is certain. My money is never doubling.  I will be living out of a box when retirement time rolls around.  Social security will be bankrupt and who can live on that anyway??

The good news is, I will be living.  WE WILL all be living, even if we are in a village of cardboard boxes.  Advances in medicine are coming quickly and almost every medical issue is being researched somewhere.  Some of the research I find idiotic and although I am sure I could readily find an idiotic example, I don’t want to lose my point.  I do however remember reading about some study and thinking, “You MUST be kidding me?  People are dying (forget cancer, let’s talk ebola or MRSA) and you are researching the difference between corn flakes and rice crispies????”  That wasn’t the study, but yes, in my mind, it was JUST THAT DUMB.

In any event, the information about the incredible increase in medical knowledge is not something I pulled from thin air.  It is from a quotable and what I believe to be, a reliable source.

“New medical knowledge has doubled every three years in the last decade. By one estimate the whole of medical knowledge will double every 73 days by the year 2020. This is a breathtaking prediction and reason enough for change!”

http://www.medicine.uiowa.edu/2020/fromthedean.html

Let’s think about this for just a moment.  This is going to require some real effort on my part so stick with me.  In 2001, we had a certain amount of information.  Call it “1” …..  If we apply the information from the dean’s message, as of last year, medical knowledge increased EIGHTFOLD in the nine years between 2001 and 2010.  As of 2013, we will possess 16 times more information.

Personally, visuals work better for me (sometimes), and based upon the recent neurocognitive tests, sometimes the visuals just completely mess with my brain…. But, let me try this chart to explain how I got to 2010=8 times

       2001 = 1

       2004 = 2 (plus three years, double the knowledge)

       2007 = 4 (plus three more years and double THAT knowledge)

       2010 = 8 (ditto above, if I’ve not confused you I can assure you, I confused myself)

Now, let’s go back and read what ELSE the dean had to say.  We are gaining in both columns.  As impressive as THIS progress is, we have the potential for an exponential explosion of knowledge.   My brain is on fire right now and I do love the word exponential, it just sounds so “edge of glory-ish.”  (I think I am going to roam the streets of New York and Brooklyn hoping to run into Lady Gaga to plead with her to rework her song, Edge of Glory, so it can be used as an anthem for the Stand Up To Cancer Foundation).

The dean and the doubling…..he mentions that there is one estimate out there stating the “doubling” might occur every 73 DAYS before this decade is over.  What does that mean?  The knowledge could be doubling at a rate that is 15 times faster than it is now.  Three years has 1095 days.  Do the math.  I am done with the calculation portion of the program.  I just know that this is huge huge huge.  And I know there are 15 blocks of 73 days each in a span of three years.  Exponential, INDEED!!  Explosive?  DEFINITELY!!

I have no clue how one might apply this “algorithm” I have discussed; I do, however, see this jump is expected to be tremendous enough for me to be unable to fathom the promise of what lies ahead. When numbers about increasing medical knowledge sit dryly on a piece of paper, I just think to myself big damn deal.  But when the numbers enable scientists to come up the the breakthrough may be the one that turns your life on a dime, then I guess the numbers really do mean something.  All of a sudden, that dry piece of paper IS a big damn deal.  Plain and simple, here is an equation I can understand:

The Dryly Displayed Numbers = HOPE for someone

My friend with that rare cancer (if you did not read yesterday’s entry, you may want to scan it quickly so you can appreciate this) had absolutely no chemotherapy medication or any other sort of medication for that matter.  Five years ago and until a few months ago, her prognosis was,

“When we see certain numbers go up, we will scan you, find the problem and cut it out.  When Dr. Surgeon tells me he can’t operate any more, we will put you in a clinical trial.”

I swear those were the words of her doctor.  I was sitting beside her while this was explained.  And, her doctor happens to be excellent.  He was just being honest.

And, when she sat beside me months later listening to the evaluation of my oncologist (diligently taking notes about everything he said), I know she whispered to my mom who was also present, “I WISH they had a chemo for me.”  Being very much aware of her plight without having to hear her say that, it made it far easier to wrap my brain around “chemotherapy” not with fear, but with gratitude.

Today, a dime turned that is a life changer.... the dime is "hope side up."

Buried in my 1300 plus unread emails (I only opened the ones that looked important or personal so these emails go back to mid-May) was one about the “new national guidlelines for treatment of medullary thyroid cancer WITH the RET mutation.”  They found the needle in that haystack!  The FDA just approved a drug for her very rare cancer.  Her wish has been granted thanks to the fact that the medical community at large knows far more, exponentially more, than was known in 2006.  I am hoarse from screaming.

 

Everything about CB is simply not important today.  This is huge.  Besides, seeing this makes me believe my brain will be restored to its prior state.  It’s not a question of “if” ….. it’s a question of WHEN.  But, the truth is, overall, I may prefer the new brain anyway.  I do however, have the apparent need for yet another note about opening emails every day, too....THIS was SUCH important info and it remained unopened... I should have been hoarse well over a month ago....


For L with love.....

SUGGESTIONS ARE GOOD, SOLUTIONS ARE BETTER

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

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

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

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

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

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

Fortunately, our “whining” has captured the attention of some very brilliant minds.  We are now the subjects of a global collaboration of research.  Small, but definitely global and absolutely brilliant.

http://www.icctf.com/index.php 

Unfortunately, the research seems to be in its infancy.  I don’t want suggestions.  I want solutions.  Before there can be a solution, the problem needs to be clearly identified.  Then, I think the next step is attempting to determine the cause of the problem.  Is it possible to solve a problem without really knowing its cause?  I don’t know the answer to that one.  Seems highly doubtful.

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

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

There are a few books that have been written about chemobrain and there are some blog entries I've found and many of those are hysterical.  When I believed my only option was “Throw in the towel,” these books helped a lot.  I have gotten some very useful suggestions with these so called “work around” solutions.  And, I've learned to stop taking this so seriously.  In fact, I've decided it's best to just laugh about it.  

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

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

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

My logical if/then brain gets it. 

IF

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

THEN

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

FIVE YEARS AGO TODAY.......

It was exactly five years ago today that I heard the words that are life changers.  YOU HAVE CANCER.  I actually think the doctor said, “We found a little cancer,” which, when the word cancer is being used by a doctor and you are the one in the gown, honestly, it doesn’t matter how it’s packaged.  The room spins, the air is sucked right out of you and in my case, the tears just began to stream down my face.  And, I am not known as a “baby cry.”

July 27, 2006

The exact date the line was drawn that divided my life into those two distinct parts.  My routine mammo in April was now the official date of entry into the chapter of my life I like to call “Entering Fog.”  I was no longer BC and it would be quite some time before I emerged from one fog and stepped into the fog where I currently reside, the one referred to (by me) as AD fog.

Between April and July, I was squished, mashed, poked and prodded with many tests followed by more tests and then two different invasive “in office” biopsies, titanium clips (hey, are these things going to set off the metal detectors, I have a vacation planned....) and then TaDa, The Gold Standard biopsy.  By that, I mean an operating room, anesthesia and a surgeon.  Yay Me.

Every step of the way, the reason the test was necessary was explained and the explanations always concluded with me being told how certain they were that “it’s nothing.”  And, statistically, I was not being misled or coddled through the test maze.  I had plenty of time to reflect upon on how many people said things like “nine times out of ten” and “atypical cells are just that, and ONLY THAT.  They are simply abnormal but we don’t leave abnormal cells in your body.”  So convinced the surgical outcome would be a big nothing, the doctor’s preference was to wait until I returned from a long planned family trip to Italy to do the biopsy.

June 2011

“I’m more worried about you being in Europe before you are fully healed.  This really can wait.”  Concern over infection when I was going to a country where, on every block, one could find a very bright and distinctive red cross illuminating the way to the pharmacy?  The pharmacy where I was able to purchase a stash of antibiotics (never know when anthrax may regain its popularity, and no poking fun either, just look at Gaddafi-he was among the missing and is front and center again) and a cream to get rid of a skin spot……not a cancery looking mole spot, but a white dot that I knew would soon spread and blotch my perfectly crafted tan…..(begging yet another thought "have you heard about sunblock/melanoma thing, AnneMarie?"  Just asking…..).  The place where no prescription was necessary and the pharmacist, despite the communication barrier, knew exactly what I needed.  You mean THAT pharmacy?  And, yes, the cream DID work.  And no, these items were not available in the US without a visit to the doctor to obtain an illegibly written prescription.

She worried about infection and I worried about discomfort.  I didn’t need to be dealing with comfort issues on an eight plus hour flight or sleeping in a strange bed or meandering centuries old cobblestone streets in oppressive heat OR being bounced around in the back of a vehicle driven by some crazy Italian who is accustomed to the insanity that is Driving in Rome.

Did I really just pass the baton of Driving Maniac Capital from my home city to the Eternal City? The yellow cab madness in Manhattan on any given day, potholes, pedestrians, delivery guys on bikes, roller blading lunatics and the latest addition to the traffic scene, The Rickshaw..... this scene is calm?  Come to think of it, I was a bit player in one of those "only in NY" scenes the last time I was behind the wheel on a city street.

Surely this was NOT me, but yet the voice was mine....Yup, that WAS MY big mouth, screaming at some guy who, being a brash New Yorker, felt the need to tap (ok, let me get real, it's NY, it was more of a slam) the trunk of my car because I got stuck in the crosswalk.  “Yo, Dude….. I was the first effin' car. How the hell could I KNOW I wouldn't even move three feet?!"  Even on the worst traffic days, at least ONE car will make it almost through an intersection.  The traffic was particularly horrendous (gee, there's a NY surprise) and OMG, that guy had to walk exactly four additional steps and he's hitting my car??  And I hear my voice again, "Turn AROUND you dumb-ass.... who do you think you are???!?!?"  I'm pretty sure I didn't actually call him a dumb ass.  In fact, I'm certain my language was far worse than any string of expletives you care to insert after the words "turn around" left my lips.  And, I don't even think the word ass or any form thereof was even uttered during that little street exchange (wasn't really an exchange since I was the only person doing any "exchanging).

I was on my way to a doctor appointment.  They always make me edgy and besides, this old cranky guy had no right.  He’s lucky the traffic was stressing me out and it appeared I was going to be late for the appointment.  New doctor and I FORGOT to put the office number in my phone.  Gee, no surprise there....I've added a new act to this gig - I'm now lucky I remember to even grab my phone as I'm running out the door.....  I don’t know into whom I’ve turned, but I swear, if there wasn’t a time issue, I would have gotten out of the car and gotten right up in this guy’s face.  The new me.  Just to be clear, it’s really easy to be brave and bold and downright brazen on a busy NY street with hundreds of people just an arms length from rescuing me.  From myself.

Where WAS I… CB strikes again… and, that wasn't me and my usual transposition of letters and numbers... CB = quicker to type than ChemoBrain... (except, since I had to go into this explanation, I just wasted more time which defeated the whole purpose and can you see how I am my own worst enemy???)

I’m trying to memorialize today, trying to celebrate the fact that FIVE YEARS has passed and I'm OK! I’ve detoured through the streets of Rome, the back of cars, planes, an Italian farmacia (thanks google translate for accurate spelling, very important) and traveled another 4298 miles (wiki detour, another very integral piece of information that requires complete accuracy in order to write a cohesive entry) back to the streets of NY where I am ready to take down a rude little man on Second Avenue????  And, awesome application of alliteration to describe the fine people of NYC:  Bold, Brash, Brave and Brazen!

Wow, what a perfectly crafted example of the journey my brain takes me through to get to the damn point already.

And the point is, there is no longer a point.

These are the days I just have to find something to do that is totally mindless and by mindless, I mean Angry Birds mindless.  Actually, I became a Tiny Wings fan..... which, by the way, has surpassed Angry Birds in popularity.  Yes, THAT mindless.  But I DID just read that factoid about AB v TW.

It's A BIG Day.  My Five Year Milestone.  My moment to feel the depth of my gratitude.  And, I am SO grateful.....  and more importantly, I earned mindless.... Yes, I did.....

YAY ME!

I needed to add this here.  It's one of those things that just flowed out as this day came to a close and I want to preserve these words, my own words, for me:

Five years ago I was crippled with fear.

Today I hope to have the chance to hold the hand of just one person walking through this darkness so they see the light on the other side.

And the light is spectacular!

MENTAL GYMNASTICS, ROUND 2

In a short while, I will be making my way back to the doctor's office for a second neurocognitive evaluation. 

I am going to preserve the gray matter so I don't use my daily allowance of brain function before the evaluation. 

Plus, I'm trying to put together some of the facts I have from the available research to increase my credibility here.  I do have a respectible amount of information to sort through.  I think I've already established this is a bit of an issue...... sorting through "stuff" to find the important things.  But, I do have "stuff."

I was on a Cancer Care conference call/webinar in mid April with over three thousand people from all over the world listening to three of the most knowledgeable doctors and researchers in the chemobrain arena.  When I heard Dr. Tim Ahles (he is a rock star in this field) mention how my brain could completely block out an ENTIRE CONVERSATION and I would have absolutely no recall ability, I displayed what someone once referred to as instant "O" mouth.  There is a podcast of the call.  It is well worth a listen.  It can be downloaded or it can be listened to through the computer. 


http://www.cancercare.org/connect_workshops/13-chemobrain_2011-04-12 


This was the first time I ever heard that mentioned.  A new bit of information, one which totally shocked me was just thrown into the mix.  I would forget conversations UNTIL I was reminded, but, once reminded, I did remember.  Having an entire conversation gone?  Ludicrous!   I began to think about all the times my husband would say things like, "you are scaring me" or "we just talked about this last night, don't you remember?"  Those comments were never well received.  Massive understatement.  I was adamant, defiant and damn combative. He would get a sarcastic, downright obnoxious sounding:

"We NEVER had that conversation.....NEVER!"

I owed my husband a HUGE apology.  Bigger than learning I could lose entire conversations was the reminder to Never Say Never.  And, the biggest lesson of all was an awareness that chaos around me really was not my fault.  Thus, the hunt began and as a result, I am heading back to the neuropsychologist today to try to pin down where the weaknesses lie so I can attempt to claw my way back to a BC brain.

I spoke to a doctor in Alaska, yes... ALASKA who was waiting for feedback/clearance/approval on a clinical trail she already completed.  I don't remember the details, but I DO remember her clearly telling me "there are blocked or totally broken pathways in your brain."  That sounded dire and I do think there is a note somewhere in the mess on my desk to email her in the middle of July.  Better do that RIGHT now before I forget for another week!

I located the only textbook (to my knowledge) ever written on the Cognition aspect of cancer treatment.  Refused to spend close to $100.00 for something written for medical professionals given the likelihood I would not be able to understand what I was reading.  Subsequently, thanks to Amazon, found "other sellers" and got the book for under $25.00 in mint condition.  And I do understand it.

And the snippets....

• Breast cancer survivor numbers hover just under 2M and many of the concerns regarding cognition are expressed from within this particular group

• There was a study using functional MRI on identical twins performing the exact same tasks.  One was a breast cancer patient (or survivor) and her twin was healthy.  Their brains were observed side by side while performing these tasks and while both were able to complete whatever they were doing,  the twin who was treated for breast cancer was using far more of her brain to get the job done.  Her sister's brain had a little area lighting up while hers looked like the Christmas tree at 30 Rock.  There are pictures and I will find them to put the link on the information page. 

• That chemo drugs do not typically cross the "blood brain barrier" but that two (if not all three) of the drugs in the CMF cocktail could be causing slow down or total inability for cell regeneration in specific parts of the brain.  I'm not McDreamy but that can't be good, can it?

• Hormone suppression drugs like tamoxifen or femara may be making things even worse.

• Age, in and of itself, a definite issue.

• Despite the best suggestions, there is NO KNOWN fix for chemobrain at this point in time.

• Working memory has become a new phrase in my vocabulary and one that has been googled several zillion times over the past few weeks.  That is a key component to some of the issues I am experiencing.

That's what is stuck in my brain but before I elaborate on anything, I want to do my homework to make sure I'm not mixing up information or co-mingling information from one thing and making it part of another...... 

I'm laughing at myself as I run out the door.  "I'm not a medical doctor but I play one on blogger."  But, I don't.  And I won't..if I do find things to share, I will share with appropriate links.

Meantime, before I am late, I'm off.  Mental gymnastics, Round Two.  And yes, my husband was given an honest and humble apology.  

WHAT THE HELL IS A HURRICADO????

A simple letter from the radiologist whose astute eyes wanted to do further images on a density he saw on my mammogram unfolded in bits and pieces before the cancer in my left breast was officially diagnosed.  That was the day I took my first step into The Maze.  As the chapter came to a close, I was finally able to rest my brain.

Too bad I would soon make that big discovery, “What brain?”  No more exhaustive research, no more need for information gathering.  It was a quest for so long.  If you are going through hell, I find it's best to follow the advice of Winston Churchill and just keep going.

We are all different and I am the type who needs to know ALL the options.   I would defer to the opinion of a doctor, primarily because I did exhaustive research to FIND the doctor so I already possessed a huge element of respect for their knowledge and ability.  I am fortunate that not a single doctor, and there have been many, was ever dismissive.

I had so many questions. They listened and took the time to explain why a particular test or whatever it was, would not be helpful in my situation.  And, there were no casual, let me attempt to be discreet, glances in the direction of a clock to make me feel I was wasting their valuable time.  The door was closed, the floor was mine and the world on the other side of the door did not exist until I was at ease and every concern was addressed.

I wasn’t talked AT, no question was stupid, and in looking back, I realize how very fortunate I was to have the best team around me.  No matter what the future holds, I will never look back upon the choices I made and question anything.  I was a fully informed consumer!   For that, I would be remiss if I didn’t use this moment to thank every single person at Memorial Sloan Kettering Cancer Center.  Doctors, nurses, educators, seminar speakers, office staff, volunteers and right down the line to the people who open the door because they can see you are too weak or too tired, or those whose job it is to escort you into the operating room or the ones who make sure the baskets of goodies next to the chemo chairs are always filled to capacity…… each special beyond words….. 

When, AT last I was liberated from the maelstrom of constant visits to doctors,  I didn’t know what to do with myself.  I was on a follow up schedule and thanks to a reduced work load which I had NO intention of reclaiming, I found a luxury that was missing from my life for so long.  Time was my friend and I can't recall when I last felt such freedom.  I was all set to participate in a writing program just launched at Sloan Kettering as a part of their ongoing support for all patients during or beyond active treatment, began a hunt on ancestry.com to build my family tree which produced some fascinating documents in a short time and I dusted off  the pile of novels I accumulated.  The Sunday Book Review was a staple in my life for years.  

Never got beyond a few emails about the writing program (fast forward three years and I am back on track with the Visible Ink program at MSKCC, paired with an amazing "coach" whose permission I will obtain to make a proper public thanks for keeping me on track), the family tree is in dire need of water and the spines on the books have not been cracked.  My “Let’s Discover Me” time did not last too long.  A series of events occurred as 2008 was winding down and I turned into Michael Corleone. 

Just when I thought I was out....

 they pull me back in.

 

I was over my head.  Reduced work load?  Not only was that a quickly forgotten concept, I was tossed into a situation of taking on responsibilities for things that, not only were completely new to me, much of it involved things about which I possessed absolutely no knowledge.  There was no "on the job training," no teacher or outgoing employee to ease the transition.  This was "figure it out for yourself as you get more stuff hurled your way" method of learning.  I did it.  Getting it done, however came with an enormous personal price tag.

My life was completely out of balance again.  There wasn't one second left over to pursue any sort of enjoyable outlets.  It was AD and in some twisted Back To The Future way, I was in BC time.  All work, only work, long days, lots of tension.....I managed to stress myself right back into an operating room less than a year after I thought I officially turned to the new calendar.

If the dominoes began to fall during the latter part of 2008, it was the winds of change blowing through my life like a hurricado over this past year that sent me running for cover. There were times it was a tornado.  Literally coming from out of nowhere, forcing me to (re)act quickly and with little thought.  Just get somewhere safe.  And there were other times, I watched it coming, knew exactly where and when it was going to hit and with a pretty good indication of the expected intensity.  I even had periods of respite where I was in the eye of the storm.  Hence, hurricane-tornado.

As the summer of 2010 was winding down, my life and by association me, went into a free fall.   My personal life was unraveling at warp speed, every single thing quite high on the stress meter and it just kept coming at me.  I got REALLY REALLY REALLY tired of hearing the pep talks.  “You are a strong person”  “You have broad shoulders”  “blah blah blah”  … 

I wanted someone to just be sympathetic , I wanted to wallow in my own little pity party and just hear, “You know what, this really sucks.  Really Bad.”  Leave it at that…..let me go through the feeling sorry for myself for a teeny bit of time.   I just needed to believe I wasn’t blowing things out of proportion.  I already KNEW it, but it would have been nice to hear it.  I wasn’t looking for solutions.  One thing I can do for myself is solve a problem.  Or, if I need help, I know how to find the help that will work best for me.

The good part about this period of time is that a surgery forced me to slow it down for a six week recovery.  The bad part of that was the fact that I was a screwed up mess and the sofa wasn’t the best place for me.  The good part of hating the sofa was getting the surgeon to say yoga was ok, the stretching would be great to aid in the healing as long as I didn’t engage my abdominal muscles.  Weeks out of what was considered a fairly major surgery, I'm cross legged and learning to meditate and breathe and stretch.  DaVinci robotic surgery-Amazing.  The alternative, if it became necessary, would have left me with a twelve inch scar and triple the downtime.

I feel like one of those people… you know “those” people who can’t shut the hell up when they think they found “it” …. My “it” was discovering yoga and I turned into the most annoying version of “those” people.  Truly.  Not only did the stretching feel great, I made a instant connection with my yoga instructor and she has kept me steady and focused through some pretty tumultuous times.  And for this, I would be remiss if I didn't say a public Thank YOU, Lorraine, from the bottom of my heart!!!

Many months would go by before I would learn that yoga was one of the best things I could have done for myself with the chemo brain.  Maybe not the "first place" best, but the point is, it was a great place to start and it IS pretty high up on the list of ways to manage stress in my world.  Unknowingly, I set in motion many of the things that I would come to learn were the very basis for learning to live in the Land of New Normal.

Manage stress, get a good night’s sleep, use every feature on my iphone-calendar, voice memos and some helpful apps.  Appointments in one place, noting the thoughts that always jumped into my head at the most inopportune moments-like, when driving on a highway.  Was doing the note writing thing, but it soon became a sea of post it notes, the most important of which was always buried under a pile of crap and, it really wasn’t cool to try to scribble notes while driving….besides the distraction of fumbling for the pen, I couldn’t understand my own scribble and that’s if I didn’t throw the note in the trash.

I am a work in progress.   And, it IS work, and it’s frustrating as all hell.  To steal a line from Laura Linney in The Big C:

I don’t want to FEEL better.  I want to BE better.

And for now, I have to accept the fact that feeling better may just be as good as it is going to get.  FOR NOW…..

BRAIN AT REST

Just wanted to pop in to say enjoy the weekend!  I don't want to take the enjoyment out of this by not taking a break so I am sticking with a Monday to Friday routine.  Weekends are for truly going where the wind takes me....

Summertime especially, people are out and about and do NOT belong indoors in front of a screen OR for that matter, outdoors checking blackberries and iPhones.

Thanks to everyone who sent me emails this week with such encouraging words.  Not only do I appreciate the time you spent to actually read my rambling thoughts, I REALLY appreciate the time you took to let me know!

I hope you see fit to pass the link along to anyone you feel may benefit from the information I've found and from the new information I expect I will continue to see as the research and the science evolves.  There is a page of links to some of the websites that offer suggestions to the chemochallenged. 

And, feel free to comment on any of these entries by clicking on the comment button which appears below each entry.

Be back Monday with some new things.....

Love to all,
AnneMarie

PLEASE RETURN BRAIN TO RIGHTFUL OWNER.......NO QUESTIONS ASKED

I am (correction, was) a multi tasker, problem solver, organization freak who works from home.  I work with my husband whose business is in commercial construction based in NYC.  Both of those things are challenging for so many reasons.  For now, I’ll just state the obvious.  Working from home requires a tremendous amount of discipline to actually remain in my office and WORK.  Working with a spouse is….. I may have to invent a word to truly capture just how THAT goes.  Until I invent a word, I’ll just call that: challenging to the 100^th. power?

I am working with numbers.  I am submitting all sorts of official paperwork, most with deadlines.  I am constantly being interrupted because a fire is always erupting somewhere. There are three different companies.  Multi tasking is difficult enough, multi company-multi tasking just takes it to a new level.

Everything is NOW… or yesterday.  Just get it done.  Normal, everyday things are continually being put on the back burner.  It was fine BC.  It’s no longer fine.  I can’t work in those situations.  I get nothing done.  BC me would have juggled it all.  Fires extinguished within 30 minutes, everyone’s immediate crisis handled and I would be back to whatever routine work was up next.

I could handle a crisis (to whatever extent one has the audacity to use the word crisis when referring  to paperwork or finding out how an employee whose illegally parked and now towed car can be located and released), jump right back into whatever I WAS doing pre-crisis, all this while emails and faxes are flying.  Jeez, I'd even start working on some less immediate “thing” or two.  I am not trying to come off as superwoman because I most certainly am not even close, but these were my working conditions.  I thrived in the commotion of it all, took satisfaction in getting it all done and even greater satisfaction in the safeties I had built in to make sure everything was accurate. 

I knew the sheer chaos was fertile ground for errors.  When it’s money or government paperwork being submitted timely and accurately, I needed to make sure I was getting it right.  Every day was not nutty, but every day was busy and every day required dealing with interruptions and multi-tasking.  And I loved it and then, I began to notice things piling up a bit and then a bit more.

My husband noticed quite some time ago that I wasn’t the same and although I would admit a slight change, primarily that things were taking a bit longer, I fought him like hell when he pointed out an error or claims to have asked me to take care of something.  “That was not my fault and I don’t know WHO you asked, but it was NOT ME.”   My existence was in the Land of Overwhelmed and for a very long time I blamed it on a heavier work load.

I am four years post chemo and I really don’t get it.  I thought things would begin to get better.  They didn’t.  Instead,  I felt like things were getting worse and once the downward spiral began, it fueled itself to dive lower and lower.

And then I stood in the mirror and I looked the same, I could do most things like usual but the things that I can NOT do, I really can NOT do.  And I realized I need to change paths.  I can’t be in a high pressure situations, I can’t work in a chaotic space with phones ringing, cross talking, I can’t do what is expected of me.  Deadlines stress me out.  

I am on the other side. It's time for me to take action.  It's time to accept the new me.  This is my life: The New Normal. I'm on the AD side of the calendar.  Still can't come up with something that captures the true essence of AD. Think the "A" should be a form of the word acceptance. Accepting Defeat?  Sounds so negative........ unless........

Hmmmmmm, if take the defeat, learn the lessons that inevitably are present in any type of defeat......if I embrace defeat for its lessons rather than continue to mourn the loss of BC life......I CAN make this an opportunity.  Take the lemons and make lemonade today...... And tomorrow, take the lemons and say, "pass the tequila, please."  Evolve.  Go with the flow. Stop resisting change.  Work with whatcha got. 

It's official.  I have My Life In Three Chapters:

Before Cancer

Entering Fog

Accepting Defeat

Ironic that BC:EF:AD is a complete scrambling of the first letters of the alphabet?  Or, just an imitation of the scrambled mess in my brain…….

VODKA TONIC, PLEASE

This chemobrain stuff, more technically called neurocognitive impairment or something with far too many syllables is no joke.   Learning to incorporate humor into the new normal, I have discovered, is the best thing I can do.   Fighting myself when I’m having a bad concentration day is a giant waste of time and a very poor reason to feed myself a hefty dose of stress and anxiety.  The gift I get from a fight inside my head is that I am providing more fuel for my “cognitive” issues.  So, the trick for the day is to accept something I CAN do and Do It.  

One needs job flexibility for this “work around” solution, an understanding employer or insistence to be accommodated under the Americans With Disabilities Act.  I work with my husband.  My work does have deadlines and there are plenty of times an issue arises that takes priority over whatever I am doing.  I struggle.  Not pointing fingers in any one direction, but what people can’t see, they tend to discount as a convenient excuse.

I don’t understand exactly what happened, when it happened or how it snuck up on me. I do, however, remember the precise moment …. the first time something happened.  The entire scene is crystal clear and I especially recall walking away thinking “THAT was weird.”  I had eight rounds of chemo, CMF to be specific.  “CMF is used to treat breast cancer, and contains the drugs cyclophosphamide (brand name Cytoxan), methotrexate (brand name Mexate or Folex) and 5-fluorouracil (brand names 5-FU and Adrucil)” Thanks to Livestrong for the cut and paste opportunity.

I was in the gray part of my life in between BC and AD, and for the record, the gray part wasn’t much fun at all.  The episode that I now know was my first step into the brain maze occurred between the second and third rounds of chemo. I was at a party and wanted to treat myself to a cocktail.  (Cleared with oncology, just sayin…….)  As I stood before the bartender, and it’s amazing to me, given these brain issues that I recall this with such clarity…..  “I’d like a vodka and……”  There it was, the unfinished sentence hanging in the air. 

Dead silence as the bartender just stared at me… waiting waiting waiting.  My first bout of mental gymnastics…..“club, no….. ginger ale…no….. not club, not ginger…. ummmm, wait, I know what I want, it’s clear, has bubbles… club?  NO, damnit, you just said that, it’s not club!”  Close to a minute went by as my eyes scanned the bar and my brain begged for a clue.  Stand in front of a mirror with a stopwatch and replay that little scene so you can truly understand how  L O N G sixty seconds can be when a stranger who is being paid to take care of about 80 guests is watching and waiting, with pleading eyes, I might add.  Finally, I blurted out enthusiastically….. “tonic…. I’d like a vodka tonic, please.”   Whew.  That was exhausting.

Do you remember that scene in My Cousin Vinny?  Actually, a better question… did you see “My Cousin Vinny?”  Marissa Tomei responds to Joe Pesci’s question about his hunting attire by going into a visual explanation of a doe eyed little deer, putting its lips to the water in the clear, cool brook and then BAM.  That’s one way I can attempt to explain how life was moving along, completely normally, so I thought….. when BAM, one day, I am surrounded by utter chaos. 

I feel as though my feet are in quicksand and I am sinking fast. And some days, I am Rocky, dancing in jubilation on the top of the steps. I can function again.  When the "out of shape Rocky who is in clear agony as he is struggling to reach the top" days started to occur with greater frequency, the Something Is Not Right became a blip on my radar screen. Still, I pushed a bit harder.  Worked longer days. Popped in and out of my office through the entire weekend.  And the work continued to pile up.

I lost complete interest in my Italian language cd's. I played them in the car for close to a year.  A trip to small town Italy to visit family prompted my desire to learn to communicate in the language of my great-grandparents.  What was once fun was turning me into a distracted driver.  The frustration was maddening. Sudoko?  Loved those too, but I may have hurled the book when I realized that besides being unsolvable, I was just staring at the grid and couldn’t figure out where to even begin to pick this thing apart.  I blamed my inability to read that pile of novels I accumulated on my book selection. I don’t like the author's style of writing, the subject isn’t interesting. Good thing both iBooks and Kindle allow me to download samples on my iPad before purchasing.  It’s saved me a ton of money.

Recently, I finally came to an important realization:

It’s Not About The Book

It IS NOT In My Head........IT'S REAL

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......