Health Magazine

Chemobrain

Posted on the 25 June 2012 by Jean Campbell

chemobrainIn her guest post, AnneMarie Ciccarella shares her life-changing experience with chemobrain. 

AnneMarie was diagnosed with invasive lobular carcinoma in 2006.  She is presently five years post chemotherapy with no evidence of disease. 

Forced to step down from her day-to-day role in management and accounting of two commercial construction firms due to long term and late onset cognitive issues related to her cancer, she presently oversees company management. 

She blogs at www.chemo-brain.blogspot.com and volunteers her time assisting women newly diagnosed with breast cancer.  She is an active volunteer in a number of national breast cancer organizations advocating for meaningful research and for the responsible use of donor money.  She lives on Long Island.

Chemobrain

Although I didn’t realize it at the time, it was after my second round of chemotherapy that I had my first brush with what continues to plague me today.  I experienced my very first episode of a “word drop.”

In that very moment, I was officially a member of The Chemobrain Club.

As a guest at a private party, I decided to allow myself the pleasure of ordering a cocktail.  Yes, YES!  I’m well aware drinking in ANY amount isn’t a good thing, but at that point in time, neither were the toxins that were being coursed through my veins every 21 days by nurses in hazmat suits.

I approached the bartender to request a vodka and …  there it was.   What would I like him to mix with the vodka?  The word was gone and by “gone” I do mean completely non-existent in my brain.  I could see it.  I was well aware that I should know this word.  I knew it was clear, it had bubbles and it took about ninety very long seconds for me to finally blurt out, “tonic.”

Welcome to the world of chemobrain.  Whenever I tell that story which is completely accurate, I’m (almost) always asked, “Was that your first drink of the night or your fourth?”  It was my first and it was the only one, too.  Years later, I realized I could pinpoint my earliest recollection of what is a very common complaint among those who seem to have cognition issues during or after cancer treatment.

I would imagine I continued to have these episodes of dropping words and paid little attention to them.  Who doesn’t have those “tip of the tongue” episodes?  We’ve all experienced that annoying feeling but, the truth is, I can discern the difference between the “word drop” and the “it’s on the tip of my tongue” episode.  Yes, I realize that may sound bizarre but to those who may be struggling with chemobrain, there is a good chance you may be nodding your heads in agreement.

I was managing two medium sized commercial construction companies.  They are “my husband’s businesses” but in reality, they are ours.  He was the front man; I was the background.  He was the big picture; I was details.  It was a frenzied environment with constant interruptions.  I handled every aspect of the accounting.

I took care of the insurance policies, responded to any letters when there were problems, and filled out crazy paperwork required by NYC to perform work at many locations.  Then there were the minutiae; parking tickets, vehicle registrations, why is this invoice still open after ten months, and where is that towed vehicle? Last, but not least, how can I authorize my driver to get the car from the impound lot while sitting in an office miles away from the scene?

I was meticulous and organized.  I built in all sorts of “safeties” as I realized my working conditions were a fertile ground for errors.  When one is dealing with government deadlines and bank reconciliations with hundreds of transactions each month, accuracy is important. I loved everything about my work and I thrived in the fast pace.  I laughed in the face of chaos.  I mocked distractions.

Until……I began to notice things piling up.  I blamed it on an increased work load.  I blamed it on a number of problem jobs that were simply requiring more of my time and attention.  Then one day, I was surrounded by sheer and utter chaos.  Just like that, I realized, it’s not the job, it’s not the chaos. Not much had changed, except my ability to perform. Truthfully, I thought I was losing my mind.  My super-organized life was gone and I was sitting in the midst of what resembled nuclear fallout.

I began to do a little investigating.  Aside from a couple of books and a handful of researchers, little was splashed in the medical feeds in 2007 and 2008 when I began to suspect something wasn’t right.  I can make a great argument and state confidently that it would be a far more accurate assessment of my problems if I were to say “something was very wrong.”

What was going on?  Chemobrain was somewhat summarily dismissed by most of the medical professionals with whom I spoke despite the fact that I was treated at one of the foremost cancer centers in the world.  The “self assessments” that I filled out at every single doctor appointment asked about memory issues and yet, the toxic drugs had long since been purged from my system. “No.  It’s not chemobrain.  It’s (insert any excuse that pops into your head).”

I have a rather curious mind.  Some (my spouse, for example) might imply that I would give Dick Tracy a run for his money when I’m digging for information. I began to see little snippets mentioning cognitive issues and each snippet provided me with more ammunition.  Slowly, I began to compile every bit of research I could find and within a few months, I knew I wasn’t crazy.  This wasn’t dementia.  It wasn’t the onset of Alzheimer’s.  And yes, there was a point when those fears were quite real.

I found a few research studies and was bitterly disappointed to learn I was not eligible for inclusion in any of them.  I participated in a Cancer Care webinar and when I was listening to the experts discussing different aspects of these cognitive issues, it was as if they were speaking FOR me.  They were describing me and they were pinpointing every nuance I was experiencing.  It was after that webinar that I shifted my mindset.  I stopped beating myself up over my compromised brain power and I jumped into action.  I scheduled an appointment for a neuro-cognitive evaluation with a doctor that is currently doing research on chemobrain and viola!  “There are issues.”

Talk about a double-edged sword.  I was dancing with delight, thankful that I was being validated and then took a step back and I remember thinking, “You are celebrating the fact that tests have just confirmed your brain isn’t functioning properly.”  Yes, I was, and YES, I still celebrate.  Validation was huge.  Having a doctor tell me, “Rather than lament what you can no longer do, try to focus on the things you can do,” was quite possibly one of the most freeing moments I have ever experienced.

I left her office holding on to those words for dear life.  In that moment, life as I knew it changed.  I could no longer manage the businesses.  At a point in life when it’s “too late” to start a new “career,” I became a cliché.  I embarked on a new journey and it is one that has taken me places I could have never imagined.  Less than one year ago, I was a frustrated mess, on the edge of a nervous breakdown and today  I am fulfilled in ways I can’t begin to describe.

So what happened?  I knew I could no longer “do numbers” but I could write.  A friend encouraged me to attempt blogging.  I recall biting her head off when she made this incredibly ludicrous suggestion.  “ABOUT WHAT?”  I knew absolutely nothing about blogging.  I began to investigate what this blogging gig was all about and I must admit, I was even more adamant with my dear, persistent friend. N-O.

“There are a million bloggers writing about breast cancer.”  Unless I was going to launch a blog like Jean’s with great resources and tons of valuable information and links (completely NOT possible with chemobrain), I would be wasting my time.  Three days into this arm wrestle, my friend blurted out, “Chemobrain, you can blog about chemobrain.”  The funny thing was she didn’t really understand the concept of chemobrain, but like any very good friend, she hid her eye rolling skepticism.  She humored me.  I can assure you, today, I’ve gotten the proverbial last laugh!

My blog began as a joke.  I enrolled in a writing program offered by the hospital where I was treated.  With the help of a volunteer mentor who guided me through the process of dusting off my creative writing skills and walked me through the mechanics of online posting, I launched a blog.  My mentor and I still laugh about our initial conversation.  She too was a skeptical eye-roller.  “Is there an audience?” “What is chemobrain?”  I wasn’t sure about the audience, but I was certain about chemobrain!  I explained, and she remained firmly on the other side….. that group of loved ones who humored me and as soon as my back was turned there was tons of eye rolling!

In my heart, I knew this issue was far more widespread than most women were willing to share.  There are real fears that careers would be shattered or jobs would be scaled back (along with pay adjustments to reflect the diminished responsibility).  Some women, according to a few of the studies I have read, are still not even aware they have an issue.  They just struggle each and every day, as their brains are on overload to complete tasks that were once second nature.

I began to share my daily “frustration” in a very lighthearted fashion.  I mocked some of the silliness.  Within weeks, I was getting private emails and I began to see comments on the blog.  Then, I noticed the blog was being read outside of the United States and Canada.  Apparently, the problems I experience were resonating with others.

Those of us who have cognitive issues are experiencing problems with “working memory” which is different from “short term memory.” Rather than a lengthy scientific explanation, it’s easier to share what seem to be the common issues for most of us.

I was a voracious reader.  I can no longer read a novel.  Correction.  IF I can stay focused on what I am reading, I would have to read the entire novel in one sitting.  Otherwise, when picking the book up again, I will not have retained anything of what I previously read.  I can, however, read biographies or books about real life situations. Apparently, because there is already a basis of understanding, the book is filling in details and nudging long term memory.

I transpose numbers,  a big issue for me since high level accounting was the most important aspect of my job.  I transpose letters, too.  Thanks to auto-correct, a feature with which I have a love/hate relationship, the transpositions are generally undone by Apple or Microsoft or Twitter or Blogger.  The downside?  Auto-correct thinks it can read my mind.  That’s annoying!  Sometimes I WANT to type “fatique” to illustrate how my mind has now decided that the letters “gue” should be “Que” … hence, I no longer complain of fatigue.  Instead, I have fatique.  It sounds divine in a “swaggish” kinda way.

Focus?  Sure.  Right up until I spot anything that is even remotely more interesting than the task at hand.  A chirping bird?  I’ll be right there!  Was that a butterfly I just caught out of the corner of my eye?  Better go check… right now.  Whatever was on my desk, and generally, it was already well past a deadline, has now entered the danger zone.  Was it a bill?  My phone service is about to be interrupted.  Was it government paperwork?  A penalty notice will soon find its way to the “Pile of Who Really Cares Anyway.”

Remembering names is a joke.  Ditto strings of numbers with more than five digits.  On a good day, I MAY have enough brain power to parrot back six.  Add the seventh number and I can’t remember ANY of them.  Post it notes worked until they began to find themselves buried under more papers with even more post it notes.  I moved my act into a notebook.  Then, it was two notebooks. Perhaps three.  Then, I couldn’t find ANY of them.  To do lists worked for a while.  Now, checking my “to do list” is a line item on yet another more important list.

Appointments?  My iphone calendar is my lifeline (unless I misplace the phone and find it in a refrigerator, along with a notebook or two ).  However, and this is a newer problem, I seem to be having an issue with trusting the times for which my appointments are entered.  Last week, for example, I had a meeting at 6PM.  It downloaded directly from the email into my calendar.  For some unknown reason, I had my mind fixed on the event time as 6:30.  The phone chimed thirty minutes in advance.  I looked and even though I knew it came straight from the email provided to me by the event coordinator, I dismissed the alarm.  The meeting commenced at 6pm.  I was twenty-five minutes late.  In my brain?  Five minutes to spare.  Something is short circuiting with the times.  Now that I’m aware, I will pay closer attention to the times.  Awareness is key.

The most important thing I do each and every day is laugh.  My brain has a mind of its own and as long as its nonsensical stuff, I’ve come up with what the doctors refer to as “work around solutions.”  My bills are all on auto-pay.  I was decimating my credit and this was a way of solving that problem.  Bills are paid with a credit card and the credit card minimum is on an autopay with the bank.  If I sit down a day late (or a month late which yes, has happened… more than once), rather than have a black mark against my credit, I’m paying a few extra dollars in interest for not paying the bill in full.  Hell, those interest charges are still cheaper than hiring an assistant.

Some of the things are troubling but I do try to pay particular attention to anything that can cause physical harm or property damage.  I realized I was having issues when I was driving.  They seemed centered on the act of backing up.  I’m very purposeful when I roll off of my driveway.  After a few too many close calls with mailboxes and the like and having had my tires rolled off the curb rather than the driveway, I am cautious to stay fully engaged when I’m backing up

Cooking is another troubling issue.  I try to steer clear of the cooktop unless I have a kitchen buddy.  The toaster oven, the microwave and the convection oven provide the heat of choice.  If pasta is on the menu, someone will remain in the kitchen or someone will go into the kitchen when dinner is on the table to double check that the burners are all extinguished.  That stuff?  Not So Funny….

As far as the rest of it goes?  I have two choices.  Accept it, or not.  I choose the former. I’ve learned the best way to do that is to laugh at most all of it.  When I lose my thought in the middle of a sentence, I will position my fingers above my nose and on my temple as if that is a way to reboot my brain. I share all of this silliness on my blog. It’s been therapeutic. It’s opened many doors. Nothing ever filled my heart more than having a total stranger contact me to say, “Thank you, I realize I’m not alone.”

I began to volunteer my time at the hospital where I was treated.  I got involved in a number of national organizations. I advocate for women who are newly diagnosed.  I speak out on behalf of those diagnosed with metastatic disease.  I have high expectations for better progress given the amount of money donated to breast cancer campaigns.  My passion to be heard drives me and my chemobrain has me going in nine directions at once.  And I love it.

I’ve been interviewed on the radio, in print and online. I simply shake my head in disbelief any time I am invited to an event or asked to share my point of view.  Mostly, I laugh. “Don’t they realize I’m just a brain-challenged clown trying to make a joke out of everything?”

I don’t know who has inhabited my body, but I like her more and more as I get to know her a bit better with each passing day.


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