Friday, December 6, 2013


Are you interested in sharing your chemobrain information with the research community?  I did and the survey did not take nearly as long as they say (45-60 minutes).  Maybe I really DON'T have chemobrain and I'm simply a chemo-fraud....

The University of Kansas School of Medicine is conducting an online survey.  The link to the survey is at this address: .   In case you have to cut and past, I've posted it as an address.  Go, read, participate but be sure to come back here because we are going to have a little fun.

This is a recycled blog post.  It originally appeared in February of 2012 so if you've been around for some time, you probably saw this already.  If not, do share in the fun.  FYI, I'm proud to say that almost every item on my list was included in the survey in one form or another.

Let's play a game today.  I'm sure many of us have gotten emails that begin:

"You know you are from New York if..."

"You know you are Italian if....."

Plenty of other examples, but some of them can be construed as disparaging to others so I'll stick with the ones that specifically pertain to me.  I am from New York and I am third generation Italian-American.  All of my great-grandparents emigrated to the US from different parts of Italy.  Their names are etched in stone on Ellis Island.

My grandparents were all born in, well.. New York.... And I was raised in a very old fashioned Italian home.  So yes, tomato sauce is gravy and "the city" is Manhattan. Those other boroughs don't count for shit. (And yes, you do curse, a lot)

Chemobrain?  A friend, who obviously does NOT have chemobrain or she would never had planted this thought in my OCD, ADD, unable to focus for five seconds head...... "You should do one of those 'You know you are'..... joke things."  People pleasing is one of those things I simply MUST DO.  Besides, I kinda owe her.  This blogging gig was her suggestion.......

Given the fact that the Journal of Clinical Oncology published results of a study wherein they observed "Survivors Who Were Treated With CMF Chemotherapy May Have Subtle Long-Term Cognitive Difficulties" ....... and they are talking twenty years OUT... and yes, CMF was the cocktail of choice for my cancer.  And, maybe some of the issues may not be so subtle.. and why do I suddenly feel like a child?  Why do I want to start chanting... "Nah nah-nah na na.. Told you so...."

Keep that validation flowing my way.  The world is getting it.  At long last....  So..... here goes with a list of "stuff" .....  I hope you will add to the conversation.  Humor me and share your silliness.  Comment away.  I am well aware this is a sensitive topic and I believe it is far more widespread than we will ever know.  In fact, I'm CERTAIN ..... willing to bet my LIFE on it certain ...... that many hide their deficiencies in fear of their jobs...... if you want to share and fear for your career, you can comment on this blog "anonymously" and even I will be unable to locate you.  Comments are not moderated.  Maybe I should not have made that anonymous comment thing quite so public.  Please don't give me a headache and force me to go deleting shit all over the place.  I'll start and then I hope some of you will Fire Away.....

You know you have chemobrain IF....
  • The biggee:  You drop words.  Ordinary, everyday words simply vanish from your brain.  In the middle of the sentence.  Right as you were ready to SAY THE WORD.  Poof.  Gone.  If you do this and you do NOT have chemobrain, there is a difference between "it's on the tip of my tongue" and a "word drop."  If you have chemobrain, you know EXACTLY what I mean.
  • You want to punch people in the face when they say, "I didn't have chemo (or cancer), what's my excuse?"
  • Your yoga instructor finally realizes she can't say "place your right hand on your left ankle" because you can no longer hear left and right and figure out which hand goes where and you find your body is twisted into a pretzel before she gently guides your movement.
  • You can no longer read a map on a computer screen.  You actually touch the screen as you hear your own voice saying "west-east" and you still think you need to head the wrong way if you want to get yourself to California from NY.  Wonder how long I'd be in the Atlantic Ocean before I realized I was heading for Europe.
  • You can't retain a string of more than 5 numbers unless the FIRST three numbers are meaningful in your life.... like an birthday or an anniversary.  On a good day, you may have the memory power to recall a Six Stringer.  If there is a 7th number thrown in, you can't remember ANY of the numbers.
  • You constantly transpose letters or numbers.  Or better yet, you find a number inserted in the middle of a word and wonder who the hell wrote that???
  • Certain letters no longer exist.  For me.... "q" is my new "g" Every time I type the word "fatigue" I have to pause. Only after I saw the word fatique in several of my journals did I realize this.
  • You say, "I'm sorry, what did you say your name was?" .... but YOU do it about five times in the same conversation with the SAME PERSON.
  • You stop in the middle of a sentence.  Literally.  And you have NO idea what the hell you were even saying.
  • The simplest math calculations are impossible to perform in your head.  Sometimes, even writing them out on paper is useless.  Impossible to determine where to "start" breaking down what amounts to a second grade math problem.
  • You are exhausted at the end of the day, you know you were busy ALL day, yet, at the end of the day, the TO DO pile hasn't budged.  In fact, it's gotten bigger.
  • You have gone from Miss Organized to living in what appears to be a college dorm room.  In every single room. In your entire home.  A mess everywhere.
  • Focus.  Huh.  What did you say?  I'm sorry.  I got distracted.
  • Walking and chewing gum simultaneously?  Multi-tasking.  No can do.
  • You have a note book to keep everything in one place.  
  • Within a week, there are three or four notebooks floating around.
  • You can't find ANY of the notebook(s) and even if they are right in front of you, you don't check them anyway.
  • You can have a completely normal, pre-chemobrain GREAT day.  And then?  Same shit for another month before you see the likes of that again.
  • Reading a novel?  Despite the fact you always loved to read, and you may have always had a "book stash" on hand from poring voraciously through the NYT Book Review each week, EVERY week, IF you can even concentrate with the book in front of you, good luck when you pick it up the next day.  It's like you never read a thing.  Stick to short stories.
  • Your phone calendar is your lifeline and the alarm feature is essential.  When you remember to unmute the phone.  IF you remember to unmute the phone.  IF you can even find the phone.....
  • You do eventually find the phone.  In the freezer.  In the fridge.  The spare fridge in the garage.
  • There's no need for a spare fridge because the real fridge is empty and the only thing in the garage fridge is your cell phone and maybe one or two of the landline phones, too.  Oh yeah, and a notebook. 
  • You notice the gas burner is on two hours after the food was cooked, consumed and the mess in the kitchen has long since been cleared.  That will be funny until the house burns down.  Then, not so much.
  • Sometimes you feel like your balance is off.. I was never Miss Coordination but hell, this is definitely different and definitely noticeable to me.
  • You MIGHT have an issue behind the wheel of the car.  Some kind of focus issue when you have to maneuver from a stopped position where you are required to pay attention to the front of the car AND the back of the car. That constitutes multi-tasking under the new normal.  This too will be funny until your shiny car resembles something that took the pink ribbon in the demolition derby.  Then, not so funny anymore.  Not the car, not the new normal and especially not the friggen ribbon.
  • You want to kill the next person who tells you "it's the new normal"
  • You don't want any more "work around solutions."  You want answers.  You want the truth.  You can't HANDLE the truth.  Sorry, Jack, You Are Wrong.  I CAN handle the truth.  I just need Cher to bitch slap me to Snap Out Of It. 
  • You turn into the court jester because sometimes, ya just gotta laugh.  
  • Instead of crying over the fact that some chemo drug may have caused physiological brain damange, you are jumping up and down in jubilation.  Every time new research information is splashed across some medical journal, you are deciding if you should be shedding tears (of joy?) or blasting some crazy hip hop music to do a victory dance.  Cue Pitbull.  I'm ready to surrender everything tonight. 
OK...... Tag, you're it.  I stole enough of the obvious ones...... you take it from here...... I'm still basking in the glow of the study.  I'm wearing my chemobrain with pride today.  Yay CMF.  Yay Me.  I had that "mild chemo" .... you know.... the kind that did NOT make me lose my hair.  Instead, and yes, this would be to YOU, CMF:

You shook my nerves and you rattled my brain. You broke my will-- I'm screwed up still..
Goodness Gracious Great Balls of Fire!

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    1. I am so glad to see these studies coming out, it's been too long considered part of aging or menopause, or some other "female problem". What I struggle with is that I had no chemo and still experience so many of the "you know you had chemo if..." Things. Dropping words in mid-conversation, losing the thread of entire conversations completely, giving a presentation and forgetting what I was talking about, multi-tasking. I have a chemistry degree and now struggle adding two numbers over 3 digits in my head. I can't even remember Avogadro's number for Pete's sake. 😊
      I'm glad to see many conversations include discussion of cancer brain, or Tamoxifen brain or anesthesia brain ( I had anesthesia 5 times in 5 months). There is more to this effect than "female problems".
      Thanks A-M. Hugs and hearts! Jane

    2. You have chemobrain if...

      You've ever been in a conversation and while the other person is talking you are thinking, "WTF are we talking about?" Especially if the conversation is NOT rocket science or if you are talking to a ten year old or if you feel like you are a ten year-old.

      If you have ever left your wallet at the grocery store, left the money in the cash machine, left the lights on in the house all day, left the refrigerator door open, left the cookies in the oven, left your keys in the door, left your glasses anywhere at all, including on the top of your head for an hour while you are looking for them......and BTW, why do I need glasses now?

      If you ever read the same sentence five times and still had to say to yourself, "stop, think, ..... quiet, quiet....uh, um...... sigh.... what? Read, read read.... I know you can do this. Why is the dog licking my foot? "

      If you've ever typed "sue" instead of "use" .... and some other things I forgot.

      Is it hot in here, or is it just me?

    3. Thanks for the link. Questionnaire complete.

    4. I knew I had chemobrain; I've just always figured it was a mild case and I learned some workarounds. Some of the things on your list I never associated with chemobrain, but now they make sense. Dropping words and typing nonsense are pretty common for me. The one that bothers me the most is the inability to do simple math. I used to be able to do math in my head. In fact, I could "see" math problems. Now I can't even figure out how many cups are in a quart or how many quarts (or cups) are in a gallon. Even the conversion sites on line are of no help - I just spent 20 minutes trying to figure out how much cream I need to buy for a dessert recipe I'm making for Christmas dinner. Ugh!


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