Tuesday, August 16, 2011

DEBBIE SAVES THE DAY

I made a new friend since I began this blog.  Her name is Debbie and she is a fellow breast cancer survivor who is part of an online cancer support website.  I wanted a unique theme and thanks to a dear friend who is also a GENIUS, a blog is born.
C H e m O  b R a I n 
Once the suggestion was thrown my way, I did a bit of research in the blogosphere.  I’m still new at this… is that a word?  Is that how one describes the world of blogs, bloggers and blogging??  I found some very talented and exceptionally witty bloggers.

Nothing, however was funnier than what Debbie wrote a few weeks back.  With her permission, this is a day in the life…. Debbie’s Life… My Life, and I’m sure, Your Life, Too. 

After yesterday, I need to regroup and collect my thoughts.  Thanks, Debbie for letting me share your words so I can rest my brain for a day.  


(Note to Deb:  I wanted to title this DEBBIE DOES CHEMOBRAIN. Or, DEB D DOES CB .......  but decided..... not snappy or witty enough.  This stands in a category all its own... nothing to add except a giant thanks!)




My ‘New Normal’ Chemo Brain

A typical day in my life…

I decide to water my garden.


As I turn on the hose in the driveway,
I look over at my car and decide it needs washing.

As I start toward the garage,
I notice mail on the porch table that I brought up from the mail box earlier.

I decide to go through the mail before I wash the car.

I lay my car keys on the table,
put the junk mail in the garbage can under the table, and notice that the can is full.

So, I decide to put the bills back on the table and take out the garbage first.

But then I think, since I’m going to be near the mailbox when I take out the garbage anyway,
I may as well pay the bills first.

I take my check book off the table,
and see that there is only one check left.

My extra checks are in my desk in the study,
so I go inside the house to my desk where I find the can of soda I’d been drinking.

I’m going to look for my checks,
but first I need to push the soda aside so that I don’t accidentally knock it over.

The soda is getting warm,
and I decide to put it in the refrigerator to keep it cold.

As I head toward the kitchen with the soda,
a vase of flowers on the counter catches my eye – they need water.

I put the soda on the counter and discover my reading glasses that I’ve been searching for all morning.

I decide I better put them back on my desk,
but first I’m going to water the flowers.

I set the glasses back down on the counter,
fill a container with water and suddenly spot the TV remote.

Someone left it on the kitchen table.

I realize that tonight when we watch TV, I’ll be looking for the remote, but I won’t remember that it’s on the kitchen table, so I decide to put it back in the den where it belongs, but first I’ll water the flowers.

I pour some water in the flowers,
but quite a bit of it spills on the floor.

So, I set the remote back on the table,
get some towels and wipe up the spill.

Then, I head down the hall trying to remember what I was planning to do.

At the end of the day:
the car isn’t washed
the bills aren’t paid
there is a warm can of soda sitting on the counter
the flowers don’t have enough water ,
there is still only 1 check in my check book,
I can’t find the remote,
I can’t find my glasses,
and I don’t remember what I did with the car keys.
Then, when I try to figure out why nothing got done today,
I’m really baffled because I know I was busy all day, and I’m really tired.

I realize this is a serious problem,
and I’ll try to get some help for it, but first I’ll check my
e-mail….


Thanks again, Deb-it's a work of pure genius .... xoxox

Monday, August 15, 2011

KICK IT TO THE CURB

I don’t want to Go Technical (especially when my real fantasy is to Go Viral, just sharing......) but there is a body of evidence I find to be a bit alarming with regard to one specific chemotherapy drug.  The drug garnering the attention of scientists that has piqued my curiosity is referred to as
5-FU.  Surely, I can’t be the only person who sees the irony and the black humor associated with that name as a potential drug troublemaker.

My mind only goes to ONE word when I see the letters FU with the other two letters just lopped off. I am determined not to offend anyone with profanity so, with the exception of a few lower level curse words already used in prior entries, I am sticking to the plan.  I would however appreciate your patience; Indulge me if you will or if you can’t/won’t, might I suggest you simply skip a few lines ahead.


I am amusing myself by singing a familiar song from a TV show I recall watching as a child.  Sing along if you know it (follow the bouncing ball and no accidental Berlusconi chants, this is a new day, a new week, a new entry, AND a NEW Beginning, too?):
m  i  C - K  e  y     m-o-u-s-e……Mickey Mouse ….. tra la la….
I just had to get that out of my system.  The word was right there.  I needed to find an unsolution so I would not be offensive.  But, I also needed to stop the screaming in my head…. that word, screaming to be heard.  Sometimes, no other word will suffice.  Thank you miCKey for allowing me to sully your name by stealing the middle letters so I was able to complete my bad word.  Someone get the soap!

I can no longer watch TV.  Not even Mickey Mouse cartoons.  I was a news nut slut.  Unfortunately, the news is now filled with numbers, i.e., stock losses, unemployment percentages, housing statistics, debt ceiling.  Or, there are names containing letters that are arranged in ways that contradict every spelling rule I ever learned.  And that means I am “5-FU’d.”  Did I just solve my profanity problem with an unsolution?  How perfectly ingenious of me!  (And AGAIN with the Self-Absorbed Thing?  Might be necessary to read some prior entries if you are just joining the party in my head.... there is a foundation for this gibberish.)

Having previously established that the news is no longer an option, I effectively lost half of the television stations available from my satellite provider. I couldn’t begin watching any of the network shows.  I was unable to pick up the story lines mid season.  As a result, I turned into a reality TV whore and after adding The Bachelorette into my DVR repertoire, apparently, a voyeur.

American Idol?  Prior to this season, I never watched an episode and the only thing I knew about Idol was that Jennifer Hudson was laughing all the up to the podium to pick up an Oscar Award and then REALLY laughing as she ran straight to the bank....and this was AFTER being voted off the island.  (I think I’m mixing my shows up here….. WHATever.)  When my four year old niece began talking about “Scotty” and then “Casey” and then (my favorite) “James,” I had to satisfy my curiosity about the accuracy of this baby’s info.  Not only was she spot on with the singers, her first pick was the last man standing (more mixed up shows?).  Who cares??  I'm trying to figure a way to get this kid into the racetrack.

Dancing with the Stars?  No one put Baby in a Corner and that set me up for the next season and the antics of Kirstie Alley.  Never missed an episode.  And now?  Some of the cable TV series’ are back.  That gives me about 2 hours of TV time in a week.  Cannot do Snookie and the Situation (except in a moment of weakness and maybe just snippets.  Yes, as far as Jersey Shore goes: That IS my story and I’m sticking to it).  I’ve watched a number of movies for the 17th or 18th time, but mostly, the TV remains off and I spend my evening time writing and trying to determine the best ways to organize my (blog research) information, my thoughts and my plans for the direction in which I wish to take my life.

The blogging was born of the writing, the writing was an attempt to unblock my brain and my brain as indicated in the blog footer, has a mind of its own.  Go ahead, I’ll wait.  Scroll to the bottom to double check.  I'll even hold your place. 

Place Marker.......................................and a good warning about the length of this entry, too

Back?  May I continue??  I need quiet in order to write. Any noise is a distraction.  I can’t even put on calming spa background music.  THAT distracts me right into a daydream about Miraval Resort and fulfilling my bold fantasy to zipline through the Tucson desert.  Background TV is a double distraction.  It’s audio AND video.  I need serenity AND, I need Anna's encouragement, too!!  She helps me fix the choppies, and she is out of town so this, quite frankly, feels like a choppy mess.  I need someone to keep me coherent and cohesive.  When I stray into utter stupidity, she is able to shine a light so I may untangle the mess in my head.  Welcome back, Anna.... I missed you!!


Despite the monk-like silence nearly every evening and my surroundings mimicking a monestary, I still do an awesome job of distracting myself.  All by myself.  A thought pops into my head and the Reality TV Whore morphs into the Internet Detour Whore.  The detour leads to something else and now I have ADD and OCD while experiencing bouts of amnesia and déjà vu in the same time continuum.  All things take forever.


I’m still searching for a pair of black flip flops for the summer.  It's mid August and I'm still hunting? I am obsessed with locating the perfect pair, inevitably get thrown off track when I see a great pair of pumps.  Although I can't be sure, it feels like something I’ve done before.  OCD, ADD, amnesia and déjà vu ALL AT ONCE.  Try juggling that, I double dare you.  In fact, I dare you cubed!  AND, those pumps I saw have taken on a life of their own.  Total Obsession.

Distractions aside and humor on the shelf for a moment, I was making a concerted effort to be
"5-FU-ing" SERIOUS because somehow, those shoes dropped off my radar and the TV/Internet whores morphed back into the medical junkie.  That hot pair of shoes may have dropped off my computer, but (back into the cliche thing, are you KIDDING ME?) the "other" shoe dropped and it was in the form of the two recent studies about the effects of 5-fluorouracil and both of them are troubling.


There is information from the University of Rochester where the drug is (was?) being tested on mice.  With advance apologies to the animal rights people for NOT caring one iota about these mice, it appears 5-FU is destroying some sort of chemical in their brains.  I make no apologies to the mice because my brain may already be altered due to the effects of this drug.  So, no empathy for the mice until the mice can empathize with me.  Technically, I was the guinea pig for the mice. I’m not being cruel, just honest and treating others (the mice) as they treat me.

The link to the research is here and on the information link page.  IF I understand it, and I would suggest you do not take my word since I'm not a scientist or a doctor, but this is how I might attempt to explain the study of Dr. Noble in Rochester.  (For REAL? Now, an analogy?  Hell... is there a trick I haven't recycled trying to get to A Point, Some Point, AND at this point, Any Point.)

     My brain is a mountain.  The ski trails represent the paths along which the nerves send signals all over the body.  I am now the skier and since I abhor the cold and have only had skis on my feet twice, that is the funniest 5-FU’ing thing in the world.  Me as a skier, I mean.  BC, the trails were pristine and my skis were waxed to perfection.  The best crews were tending the to the slopes and the finest wax available was expertly applied to my skis.  The trails were packed with skiers (throw in a few snowboarders, too) and everyone was moving around in perfect synchronicity.  It may have appeared chaotic, but each skier remained on their respective trail at an appropriate speed.  No collisions, no falls.  Just constant, fluid motion.
     Enter 5-fluorouracil.  The trails began to deteriorate AND despite the efforts of the groundkeepers, the snow was not sufficient to keep the trails in such great shape.  The slopes were filled with ruts, bare spots and whatever else causes such distress when ski people don’t have “packed powder” whatever the hell THAT means.  My skis have no wax and because of the
5-FU, there is a shortage of wax, at least for MY skis.  The mountain is still there.  The trails are still obvious to the naked eye. Indeed, many of the trails are quite pristine. I still (hysterically enough) have the skis on my feet.  Except, there is no more smooth, easy ride down certain parts of the mountain.

With that image in mind, if you are so inclined, read an excerpt from the study, otherwise, skip past the block of highlighted text :

“In the current study, researchers gave the drug 5-fluorouracil (5-FU) to mice and observed the effects on their brains. They found that 5-FU attacked cells in the brain known as oligodendrocytes, destroying them so thoroughly that even six months after the end of treatment, the mice's brains were almost devoid of the cells.............Oligodendrocytes are responsible for producing the protective myelin sheath that keeps nerve signals traveling smoothly. The degeneration of this sheath is associated with a variety of neurological conditions…….”

That’s the biology of the situation.  Something may (cannot emphasize the magnitude of the EMPHASIS on MAY) be happening in my brain.  Something real.  But this is research in its earliest stages.  Hopefully the studies will continue and expand, I am still not sorry about the mice.


The first paragraph in that link says-and this I would suggest reading... and slowly at that.  It took me a minute or two (hours) to grasp the point.... 

"adverse neurological effects of chemotherapy occur with a frequency that suggest..... consequences of cancer treatment may affect more individuals than many of the most intensively studied neurological diseases." 

In conjunction with the biological research on the mice, additional work is being done in Texas at
MD Anderson Cancer Center, the only hospital for cancer treatment ranked above Sloan Kettering on the latest US News Best list.  (I beg to differ for the sole reason that Sloan Kettering was the ONLY HOSPITAL on the list to have the highest possible score in "patient safety" and for the love of everything holy, isn't keeping patients safe the most important thing a hospital should do?  JUST saying.....)  Anderson, however, IS making cancer history. Their team discovered my friend's drug. Their place is secure in my heart .  And, I do love the way they established their brand.  Brilliant!


One of the researchers making cancer history at MD Anderson is another rock star in the chemobrain arena.
Dr. Christina A. Meyers.
remember reading a bio but I can’t FIND IT…. I’m fairly certain she has been in this area of research for her entire professional life.  She gets her very own line.  And her name, all by itself, is a complete, grammatically correct sentence.  She co-authored the only textbook I could find written solely on (and also titled) Cognition and Cancer.  The study (and it's the "late onset" part that jumps at me) from 2010 was titled:

Acute and Late Onset Cognitive Dysfunction Associated With Chemotherapy in Women With Breast Cancer
Excerpts from the study, once again, highlighted to bypass in case this dry stuff isn't for you.....


"Before chemotherapy, 21% (9 of 42) evidenced cognitive dysfunction. In the acute interval, 65% (24 of 37) demonstrated cognitive decline. At the long-term evaluation, 61% (17 of 28) evidenced cognitive decline after cessation of treatment. Within this group of patients, 71% (12 of 17) evidenced continuous decline from the acute interval, and, notably, 29% (5 of 17) evidenced new delayed cognitive decline. Cognitive decline was most common in the domains of learning and memory, executive function, and processing speed.
In addition, delayed cognitive dysfunction occurred in a large proportion of patients. These findings are consistent with a developing body of translational animal research demonstrating both acute and delayed structural brain changes as well as functional changes associated with common chemotherapeutic agents such as 5-flouorouracil."
In their conclusion, the team remarked (even if you despise the dry stuff I'd suggest this is worth a glance):
“in the current study, we additionally observed progressive and delayed cognitive decline that does not appear to be attributable to other interventions (eg, chest wall radiation or hormonal therapy) or progressive or metastatic disease. This is very concerning as clinical lore has suggested that treatment-related cognitive dysfunction should dissipate over time.”
Dr. Meyer’s team findings based upon the cognitive evaluation testing of breast cancer patients is consistent with what Dr. Noble is seeing in the mice.  And, NO, I still haven't any Sympathy for The Mice.  And yes, if, like me, that just stuck Mick Jagger in your head, you should be mentally singing “Please allow me to introduce myself....”  … Oh wait just one minute: A different song is pushing its way in.  ADD is in full control right now.  (Wouldn’t that quality as an oxymoron…. ADD having control?)


No matter, NOW Jagger is in my head, I’m hearing some other song and truthfully it is a song I would not have known if I wasn’t also whoring around Reality TV with “The Voice.” The only way to have “the moves like Jagger” is in a proper pair of shoes.  I am BACK on the prowl for those shoes I was looking at earlier, the ones that became A Total Obsession.  A hunt for a stupid pair of flip flops is now a quest for the Holy freakin' Grail?  What can I say?  They were smoking hot shoes.  Hell, they even have a signature red sole and that matches my blog color scheme.


How did I go from 5-FU to shoes to this chemotherapy mess and then to TV and back to 5-FU (as a nasty drug and a nasty word, too) and now back to shoes again and where the hell do the mice fit into the process?  Really?? It must be the amnesia.

The fluorouracil earned the big prize:  A two handed gesture utilizing my finest skills in “hand language” and a simultaneous obnoxious shout, “Go 5-FU YOURSELF, fluorouracil.”

And, now that I’ve dispensed with the angry tone and gesture, I will soothe myself with one of my favorite tools.  Retail therapy is always GREAT.  Until, of course, the MasterCard Bill arrives... 

The Christian Louboutan Red Soled Shoes?  Over the top, crazy expensive.


The black flip flops purchased on sale?  Cheaper than you know what.


Finding a website selling sample (probably counterfeit copy) CL's at crazy discounted prices?


PRICELESS



Marilyn Monroe knew exactly what she was talkin' about
"Give a girl the right pair of shoes and she can conquer the world."
I am definitely conquering something.  I'll make Marilyn proud.
(No doubt Jennifer Hudson had The Right Shoes, too!)

Friday, August 12, 2011

CLUB MEMBERSHIP NOW OPEN


“Right now, I’m having amnesia and déjà vu at the same time.” 

Can you relate?  First, you have to stop laughing.  Steven Wright is one of the funniest, dead-pan, one liner comics and his stage presence is pure genius.   I remember seeing him on an HBO special many years ago.  His delivery, the pause for effect, the facial expression and ultimately, the statement of observation….. medicinally humorous.  Many of his lines can become mantras for the CB generation. 

CB Generation?  I GOT IT!  I just came up with a name for this club I’m going to launch.  It will be CBGB’s.  It’s easy to remember, well, since nothing is easy to remember… maybe it won’t be easy, but it rhymes, the first three letters are simple since they stand for Chemo Brain Generation.  That last “B”  ummmm, I forgot what popped into (and out of) my head when I realized I would likely have trouble with some sort of legal trademark infringement issue.

CBGB's is a renowned rock club in NYC which is undoubtedly why the letters popped into my head in the first place.  For now, I’ll have the acronym stand for:  Chemo Brain Generation Boobs (Buddies?).  I will give that some thought.  By the time I figure it out, the process server will be at my door with a cease and desist order and I’ll have to start from scratch anyway.  For now, if you are reading, you are a charter member of the presently known as, (and likely just as quickly formerly known as) CBGB’s.  Welcome.

Offically:

CBGB 

The Mission:  Soidarity, support and sympathy for those experiencing SIMULTANEOUS bouts of amnesia and deja vu.

With proper credit to Steven Wright for the brilliant observations and with profuse apologies to The Original CBGB’s, allow me to present the Top Ten (fully expecting another process server from the Letterman folks) talking points should you attempt to recruit new members. 

  • When I’m not in my right mind, my left mind gets pretty crowded.
  • On the other hand, you have different fingers.
  • I was trying to daydream, but my mind kept wandering.
  • Oh, well, I guess this is just going to be one of those lifetimes.
  • It doesn’t make a difference what temperature a room is, it’s always room temperature.
  • There’s a fine line between fishing and just standing on the shore like an idiot.
  • Well, you know when you’re rocking in a rocking chair, and you go so far that you almost fall over backwards, but at the last instant you catch yourself?  That’s how I feel all the time.
  • I like to reminisce with people I don’t know.
  • I’m writing a book.  I’ve got the page numbers done.
  • A friend of mine once sent me a post card with a picture of the entire planet Earth taken from space.  On the back, it said, “Wish you were here.”


Wish you were here!  (from me, not SW)

On that note, let me wish everyone a happy, stupid weekend.  I will spend it preparing arguments in advance of the anticipitory CBGB legal issue and contacting Steven Wright to offer him an honorary membership into the club.

Thursday, August 11, 2011

UNSOLUTIONS

My intention for today was to elaborate on a word I threw into yesterday's entry:
UNSOLUTION
I think that is a pretty clever way to describe the ingenious ideas I have found to help me work around and through some of the things that have become challenges in my life.  The word itself is ingenious.  Unsolution.

That’s sort of self absorbed and I don’t really like self absorbed people.  I would feel a hell of a lot better if someone ELSE told me, “Wow, AnneMarie, what an ingenious word!”  Can I lie and say someone else complimented my “ingenuity?”  Any person will do, I’m just trying to be a bit humble.   That won’t work since I don’t like people who lie.  Are all lies necessarily bad lies?  That is definitely a topic for a philosophy class and I do not have the head for a debate with myself about the pecking order of lies.

Quite a conundrum for me; Sophie’s choice?  I will appear to be self-absorbed or I will be telling a lie.  Why can’t I just let it go, forget my giddiness about “Unsolution” and let people make their own decision.   Simply stated, the OCD component is flaring up, hence, I can’t let it go because suppose the “UN” (not the United Nations, the un at the beginning of my word) is presumed to be a typo.  Or, suppose, like I so often do, the word is glanced right over.  My stupid obsession is to make sure EVERYONE who happens to glance at this page, grasps the word and understands the reasons for its use in my AD vocabulary.

Really, the unsolution is a moot point.  Why?  Every single challenge that I SEEM to have mastered with an unsolution is unraveling.  Work around solutions (I mean, my unsolutions….. I can see it’s going to take time to fully implement the use of this word) are losing their effectiveness.

My good old Yankee ingenuity with these great ideas is creating more chaos.  I might even be inclined to say it’s starting to wreak havoc in too many areas.  The “events” are being put in my phone but the information is inaccurate.  The post it notes about the hose in the pool?  Ignored.  Did I remember to lower the water the next day so it was at an acceptable level?  NO.  Did a black cloud open up right over my home adding too many inches of water into the pool?  Yes to the water (and, for that matter, yes to the black cloud that has long since worn out its welcome in the sky above my home).  Did I go outside to drain some of the water and in the lousy sixty seconds it took me to start this process did the steady rain turn into a torrential downpour?  Of COURSE it did.

But, last night my unsolution worked!  I have a remote control for my filter.  I had it right by my side.  I could see the water level and when it looked okay, I hit the remote to shut everything down.  Well, A-M-E-N, sista!

This morning, I remembered the OTHER reason I had the remote by my side all evening.  The filter goes on automatically and today was no different than any other day.  Like clockwork (actually, it IS clockwork), 9AM this morning, the cycle began..... and when I saw that big blue, you can see it from the other room remote, I ran outside like a mad woman to adjust that stupid valve because, oh never mind, I just can’t wait to see the water bill this month.  

As for Yankee ingenuity, THIS is Yankee ingenuity:

The New York Yankees and Memorial Sloan-Kettering Cancer Center have joined together to support the Center's programs in pediatric patient care

http://mskcc.convio.net/site/PageServer?pagename=giv_involved_yankees_universe



Wednesday, August 10, 2011

TRUST BUT VERIFY

Sometimes, I let people get inside my head.  Other times, I can't get out of my own head.  And a friend has finally succeeded in convincing me.......after saying it about a trillion times: "Do not let anyone f**k with your head."


Hey didn't they say that's how much money was lost in the stock market the other day, in ONE day????  Does anyone know how many zeros are in a trillion.... and what comes after a trillion.... See? Now here is where I'm going to take a stab at this.  My brain won't have it any other way.  Billion=Bi=2  Trillion=Tri=3  My guess, in proper Jeopardy format, "What is a quadrillion?"  I have no clue if I was just tsk tsk'd by Alex TREbeck but in my logical mind what should follow Bi and Tri is Quad=4.  I do not know, nor do I care what comes after "trillion" ... For me, "trillion" is such an enormous amount of money, I can't grasp it as a number at all.  For me, it's a concept.   (That was an absolute CB detour which thankfully, did not result in the need for me to start googling words or hitting the wiki pages.)


Apparently, the OCD component has crawled back under its rock which is just fine by me.  That exhausts me.  Running from thing to thing with ADD and then the inability to just let it go already when the OCD kicks in....  Exhausting cubed (gotta settle for cubed...would have been great if I could recall the word for the 4th Power.... maybe it IS just the 4th power?).... How about THIS:  It's exponentially exhausting.  I'm fairly sure that is NOT grammatically correct ;) but the alliteration is great! 


I'm more scatterbrained than "normal" (can I POSSIBLY get any more oxymoronic than that??).  As a result, I am letting people inside my head, I cannot get out of my own head and I am letting everyone (not just anyone, but yes, EVERYONE) f**K with my head.


The phone calendar?  Great, except I'm adding events and once again today, just like on Saturday, the event was there, the DAY was wrong.  I am going to seek validation in the form of scientific research.  Starting tomorrow, I am going to be MORE aware of every single little thing so I can come up with some better and more effective unsolutions.  I'm making up my own word for the so called "work around solution" since we already established these fixes were merely bandaids, NOT solutions.  You watch.  Just like they added defriend-or was it unfriend?... well, whatever....when chemobrain marches into the forefront, my word will make it into the dictionary, one day, just wait.  


What is printed below came directly from a pilot study done in 2009 at UCLA.  I will copy the entire paper with all the annotations and citations onto its own page.  The paper is worth reading.  I will try to find the link to the webpage but I have learned with medical papers, they may not be available in a month.  The abstract may be there and the full version is no longer available unless I fork over my Jeopardy winnings.  Since I was able to download it, the copy is on my computer in PDF form.  I will be happy to email my pdf copy if the page is difficult to read on the blog.  Just give me a shout.  


I tried not to pull anything out of context and I think I did a pretty decent job with the selections I chose.  Without further adieu, The Highlight Reel:  




little is known about this specific phenomenon’s psychosocial impact on breast cancer survi- vors. This research documents in-depth the effects that cognitive impairment has on women’s personal and professional lives, and our data suggest that greater attention needs to be focused on this arena of survivorship.


cognitive impairment can be problematic for survivors, with many asserting that it is their most troublesome post treatment symptom. Survivors report diminished quality of life and daily functioning as a result of chemobrain.


Chemobrain significantly impairs a proportion of cancer survivors, at great cost to them economically, emotionally, and interpersonally.


symptoms such as memory loss, inability to concentrate, difficulty in thinking, and other subtle, cognitive changes. Although the severity of cognitive difficulty varies among patients, the slightest deterioration in cognitive function can be devastating for the patient’s quality of life


A growing body of research examines cognitive dys- function in breast cancer patients who have undergone standard-dose chemotherapy. A study by Wieneke and Dienst [4] analyzed 28 participants who were treated for early-stage breast cancer with either CMF chemotherapy, CAF chemotherapy, or a combination of the two. A series of neuropsychological tests were performed in order to determine any affect on cognitive functioning. Their results indicated that 75% of the participants suffered from cognitive impairment on one or more neuropsychological tests.


The study indicated that cognitive deficits were still present even a decade after treatment and that patients treated with adjuvant chemotherapy were much more likely to perform poorly on neuropsychological tests than patients who had undergone local therapy only. A later study by Castellon et al. [9] further confirmed these previous findings, again reaffirming that chemotherapy negatively impacts neurocognitive functioning.


Although the controversy over chemobrain persists, survivors continue to report post-chemotherapy cognitive changes, and a significant body of research validates the existence of cognitive impairment experienced by breast cancer survivors subsequent to chemotherapy.


A 2005 article by Matsuda et al. [25] recognized that the “principle negative effect” of this mild cognitive impair- ment was “deterioration of quality of life.” Citing a 2001 article by Bender et al. [26], Matsuda et al. noted that the most devastating effects are “for patients who hold professional and social positions.”


our paper is one of the few in-depth descriptions of the psychosocial ramifications of chemo- brain in the words of cancer survivors. Such literature needs to be available not only for breast cancer survivors, who may seek reassurance and often voice a longing for validation of their cognitive symptoms, but also for nurses and physicians, who need to better understand the sorts of changes their patients may be undergoing during and after chemotherapy so that they can be informed and compas- sionate providers for their patients.


since the term “chemobrain” was then and is still unfamiliar to some survivors, we queried about cognitive impairment by asking separately whether they experienced loss of words, forgetfulness, memory loss, or chemobrain. Interviews and fieldnotes from the interview visit were tape recorded and transcribed.


You have to fight to make yourself remember numbers, words, places that you go. Sometimes I would leave the house to go somewhere and I really couldn’t remember how to get there... it almost made me break down because of the fact that you think you’re losing your mind.


I’m still able to function. It’s just the fine degree of memory or the speed at which I’d be able to recall information.

I can’t read technical books anymore. I just don’t understand them. I’ll read the same page over and over and over again and it just doesn’t make sense. So I can’t self-teach the way I used to be able to...I [also] don’t read philosophy books anymore. I don’t read books about politics or historic analysis or critiques. My reading is a lot lighter.


What I have to do sometimes is have my son come over and pay my bills. Can you imagine? It really makes me feel bad...I’ve been so independent and here I am at 55 years old and I can’t pay my bills. And the money’s there.


I just felt like I was getting scared that I would hurt myself...I [couldn’t] remember if I looked at a stoplight. I felt like it was putting myself at risk.

I have been so lost [while driving], I just pull over, and break down, and start crying. Because it’s places I’ve been before and I know where I am going. It’s terrible.


these are some of the things that happen... just be aware, so that you don’t get frightened that you are losing it or aren’t meeting everybody’s expectations.’”


[My oncologist] noticed that I wrote on my hand, my notes, and he said, ‘what are you doing that for?’ And I go, ‘you guys did this to me. I don’t have my memory anymore.’ He goes, ‘well, do you think you have chemobrain?’ I said, ‘yeah...does it go away? Does it get better? Does it get worse? What’s the deal?’ And he says, ‘we really don’t know.’ And I think that’s the case. I think they really don’t know. That’s why nobody’s sending you anywhere [for treatment.].


I wish I could really talk to somebody who could really validate what I’m saying because my family, they kind of laugh. I feel that sometimes I desperately struggle to remember things. I don’t know who to talk to. I’ve told everybody, but nobody [is offering any kind of help].


Chemobrain can affect job performance. Because the ability to focus diminishes, duties become more difficult and often take longer to perform.


I find myself getting day dreamy. I am like the ADD kid: [I] can hyper-focus as long as [I am] doing one thing, but if something walks by down the hall, [and] I see it...I am gone.


Respondents reported decreased efficiency and speed at work


Memory problems also often increased stress, especially in a professional environment.


“I get frustrated easier. You know, I feel more stressed, like I’m at the counter and I’m working, you know, doing the filing, then all of a sudden, sometimes I draw a blank, like, what do I do next?” Charlotte, a single mother whose income supports two children, was forced to quit her job and find one with a lighter workload. As a result, her salary fell dramatically.


I’m still probably more efficient than the average fool, but I know that I’m different, which is one of the reasons that I’m working...a much less demanding job. I don’t need to have the kind of technical expertise that I did in [my previous] position. So, I have the earning potential that’s about $25–$30,000 less.


I went into retirement because of the cancer, simply because I could not maintain the level of work that I was used to...They came to me for everything. I had a big responsibility and I enjoyed it...after the cancer and going back to work, I couldn’t sustain that. Every 2 hours, I was going somewhere to sit down and relax and could not think well...I couldn’t coordinate everything that was going on. I couldn’t do it anymore...With this memory thing I was very frus- trated at work and so I thought that I can’t go on like this. It was a chore now going to work than a joy. I just assessed the situation and said that it’s not worth it.


Post-its, with some covering walls in their homes with reminders for typically mundane tasks such as “turn off the gas” or “remember to close front door.”


I’ve just made [my memory] into a game. I don’t worry about it if I don’t remember...I tell people up front that I don’t remember well, so if it’s something important to [them], [I tell them to] call me several times. With my daughter, I’ve told her that she is very important to me, but I don’t remember well. If it’s important, you have to send it to me in a letter so I can put it on the refrigerator or tell it to me time and time again. I tell her that if I don’t remember it, I’m not going to let [her] beat me up because I didn’t remember it...so even though my memory is very bad, I don’t let it get me down and I just turn it around and make it comical and do other things with it... even though I know it’s major.


Our study also points out that the need for spreading awareness and developing effective interventions and therapies is not purely for the emotional and psychological well being of survivors, but for economic purposes as well. The impact of cognitive changes on the financial stability of patients and their families can be quite significant as seen in the accounts of our study participants. Many women are unable to function at the same level professionally, to complete their educa- tions, or to keep their jobs, thereby profoundly affecting their financial security, particularly if they are the sole providers in their households.


published data suggesting that there is a discrepancy between the cognitive decline women perceive and what objective cognitive assessments show [21, 31]. This does not mean that breast cancer survivors are overestimating their degree of cognitive impairment, but rather, may mean that the current neuropsychological batteries used in the assessment of these women are not sensitive enough to detect the changes in functioning that they experience. The stories we gathered in our interviews show the various changes in memory, concentration, and thinking ability that they have experienced since chemotherapy. The fact that certain assessments cannot appreciate these changes does mean not they do not exist



we need to develop neurocognitive batteries that can better detect subtle changes in cognitive functioning. 

Me again:  Let the words of the research minds sink in.  I'm stepping aside on this until another day.

Tuesday, August 9, 2011

AND WON'T YOU BE...MY NEIGHBOR??

My “To Do List” is useless.  It’s been ousted by A Very Important List, now commonly known as VIL.  The VIL takes priority over all.  Checking the things on my To Do List is one of the “permanent” items on my VIL.  However, discipline and order must be maintained.  I can’t go NEAR “To Do” until I check VIL.  Yes, my life is a series of lists and piles of papers.  What was previously kept in a ridiculously organized fashion is now a disorganized, chaotic mess. 

In addition to dealing with word dropping, simple math calculations, an inability to succinctly convey a message without losing my train of thought, finding my way out of a paper bag, flooding my yard and blowing a surprise party, I have ADD and OCD “cubed.”  I always liked that wise crack when attempting to explain how exponentially impossible something has become.  Not to the second power or squared, not to the 100th power because that’s just reserved for spousal issues, simply “cubed.”

If the VIL could take on some semi-human form: Tinkerbell, Elmo, Bozo the Clown, hell, I’d even deal with Mr. Rogers, it would be extremely helpful.  I envision this kind character taking me by the hand, leading me to the most important thing on my list and then, standing guard with gentle encouragement so I am able to see just ONE thing through from start to finish. 

When my attention is diverted (notice I said WHEN and not IF) and I veer off course; Clearly, I am hard to handle.  In those cases, Mr. Rogers et al., have NO SHOT… they are goin’ down.  They failed to do their job as they were blindsided by the unexpected.  They are no match for my ADD.  They should have been paying more attention to my actions.  They would have seen it coming and might have been able to head it off.  They have only themselves to blame.

Unfortunately (and unbeknownst to me), Mr. Roger's neighbor is one half of a WWE Tag Team.  He's already cooked up Plan B and it involves a call to his neighbor.  That dumb song is the distress horn and I am seconds away from a body slam which will force me back into The Concentration Zone.  "NO, you can NOT go outside to water the flowers, you are staying right here until every bill on this desk is paid!" he says, arms folded in a Mr. Clean stance minus that cute little wink.  The wrestler guard wears a menacing grimace, bears a scary stern tone and this guy will take me down.

It has become IMPOSSIBLE for me to stay on track and actually accomplish whatever it is I need to do on any given day. Somewhere along the way, I’ve fallen into a swamp due to my inability to see through the fog.  For right now:  It Is What It Is (words underscored solely because I happen to like that catchphrase and I am sure I missed a great opportunity to utilize that cliche......water under the proverbial bridge).  I accept this and think I need to make that a little clearer to anyone who may be reading along.  It’s no longer distressing. Knowledge is power.


My attitude has shifted tremendously.  Do I still get frustrated?  Hell yeah.  That’s the curse of knowing there is a difference between BC and AD.  I either laugh with those who try to get it or I simply ignore those who make no attempt.  I am not bitter or angry or mournful.  I accept this “situation” (and really, Jersey Shore in Florence? of ALL the cities in Italy, Firenze, REALLY?….. and, just wondering if anyone agrees that Berlusconi’s antics should have earned him a cameo?). 

My lamenting, the sole misfortune in my Situation (BER LUS CON I…. chant with me) is that I do know the difference.  My dad once told me I was supposed to be “Stupid and Happy.”  He was referring to an entirely different Situation (keep chanting) and at the time I remember questioning him with a bit of indignation.  He wasn’t trying to tell me I was supposed to be a stupid person, just that I should have been ignorant of whatever it was that made me unhappy.  Ergo, I would be happy due to my ignorance.  That's one of my dad-ism's you may have to ponder on your own.  It's really quite simple to understand although I think it's easier if one applies it to a (ready to chant one last time?) Situation in their own life.  You, too can join the ranks of the "Stupid and happy."


For the purpose of this discussion, if I didn’t remember my BC functioning ability, I would be “stupid and happy.”  But because I do remember those days, I am determined to learn what I can about chemobrain.  I want to be a source of humor and validation.  I want those who may be reading this to nod their heads in solidarity.  I want to be part of a solution.

I would love to find ways for us to support each other.  Share the little tricks that are not on those lists from the major cancer organizations.  Those lists are a great foundation.  They are my building blocks for The New Me.  Necessity may be the mother of invention but ingenuity is the key to living with chemobrain.

"Our greatest glory is not in never falling, but in getting up every time we do."

I’m not stupid, I'm falling, I’m not staying down, I will be ingenious when I trip up, slip up or mess up..... and I AM Happy about it!


**The quote may belong to Confucius, but this glory theme I got goin’ on definitely belongs to Gaga.


Monday, August 8, 2011

IT'S FUNNY TIL IT'S NOT

It’s all fun and games until someone loses an eye.  I think this line has been used by countless generations of mothers.  Tell the truth.  Do you actually know someone who lost an eye playing some stupid game?  I don’t.  And I don’t even know a person who knew someone’s sister’s cousin’s best friend’s older brother who lost an eye either.  In other words, this is another one of those Urban Myths.

I’ve been laughing my way through chemobrain.  I try to pay attention, to be aware, to stand up and take notice whenever I feel something is quirky.  I try to devise a system for the things that were second nature, things that have since become the challenges in The New Normal. Every stupid thing I do is NOT related to my cognitive issues.  Sometimes, I’m just plain dumb.  And sometimes:


“It’s just like Momma says, ‘Stupid is as stupid does.’ ”

In less than 36 hours between Friday and Saturday, I managed to pull off a few really great episodes of sheer and utter stupidity.  For starters, I am unable to read a map.  Qualify that.  I can read the map.  I see the streets but if I am trying to help someone find their way, I’m useless.

Maybe it was the pressure of knowing someone was driving around and would soon be late for a meeting. Maybe it was the fact that I could not quickly pinpoint the location.  Maybe it was the realization of yet a NEW issue and this was a tad disturbing?  Maybe it was the absolute disbelief I couldn’t get proper orientation until I actually touched my computer screen, saying aloud, “north-south” and then had a fight inside my head about west and east?  Lesson learned all the way around.  Tom Tom and Garmin are great navigation gadgets.  And I’m not the best resource for directions. 

And while I’m on the topic of driving, later that very same day, I went to the drug store to pick up a prescription.  This is the same pharmacy I’ve been using for over 17 years.  Driving the same route, to the same place with no course deviation.  On my return, I was within blocks of home at a stop sign facing a house that could use a little landscape change. I mean really, 17 plus years and not even one new shrub??  Not only did I fail to make the turn (serves me right for judging their lousy landscaping), I GOT LOST two blocks away and found myself on some dead end street I did not even know existed.

When I finally got home, having made a few other wrong turns, I was done with Friday.  Indeed, I was done with the entire damn week.  Enough of maps and directions and turns. I grabbed the bottle of tequila (Patron Café….and I usually despise coffee flavored anything except for, ummmm, well, COFFEE), poured a shot (anxious to kiss the other side of this week....) and waited for a friend to come over so we could continue the tequila theme with some margaritas.  Relaxed, laughed a bit at the stupidity of quite a few things that went on during the work week, thankful for the weekend.

Saturday's plans included a party in celebration of the 25th wedding anniversary of my brother and sister (in-law).  She IS like a sister but if I didn’t add the (in-law), some might think I come from a family of freaks.  It was on my phone, in the calendar, 1PM SHARP, SURPRISE.  The sun was bright and warm, I had plenty of time so I decided it would be a good idea to sit in the yard to get my daily dose of Vitamin D.  It’s how I justify my tan, which in turn, is the reason why my annual skin check is conveniently scheduled for the end of October. 

Of course, I can never just go about whatever it is that I set out to do.  Once in the yard, I began to straighten up, tossed the hose into the pool since the water was a bit low, picked apart a few flowers, and in the most cliché of ADD moments, got totally distracted by a beautiful yellow butterfly.  Ayyyee, did I even sit still for five minutes to get that little sun kissed glow?  I think not.  In fact, definitely not.

Settled for the facial glow from some overpriced French moisturizer, couldn't decide what to wear, left a trail of clothing and shoes right to the front door and got on the road only slightly later than I hoped.  Halfway to the party, I hear my cell phone: a text message.  Then again a moment later, another.  Damn AT&T!  Can someone explain how a text message is useful if it takes 17 hours to transmit to my phone?  That didn’t actually happen on Saturday, but it did happen the day before.  Saturday’s instant communication lag was only 15 minutes. 

My brother, not the party honoree brother, my other brother…. a simple “where r u”  …. And then I see the other message, not a text, the call placed 15 minutes earlier......from “Dad.”  Mom’s cell is still in my contacts as “dad.”  I can’t change it.  I text back my location and then called my brother.  I was going to be about 10 minutes late.  I thought perhaps there was a change in the expected arrival of my brother and sister (in law) and I might be the spoiler.  You know, THAT person the one who has to show up just late enough to ruin it for everyone.

So much for phone calendars and the fact that I am now disciplined into putting information in IMMEDIATELY.  Gotta work on my accuracy with the information now, too.  So much for leaving notes to remember things.  The party arrival time was noon, the “SURPRISE” was at 12:30.  I walked in to a room full of people already seated, the handful of wise-asses shouting "surprise" at me, still would have been ten minutes late EVEN IF…. And despite three well placed reminders, I got back home just as the water was about to spill over the edge of the pool.  Took an hour to drain it down to an acceptable level.  It's still too high.  I’ll drain the rest tomorrow.  If I remember.