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.

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