Friday, April 20, 2012

"Chemo Brain".....

For years cancer survivors have worried about, joked about, and been frustrated with the mental cloudiness they sometimes notice before, during, and after chemotherapy. Even though its exact cause isn’t always known, this mental fog is commonly called “chemo brain.” Patients have been aware of chemo brain for some time, but only recently have studies been done that could start to explain it.
Doctors have known for years that radiation treatment to the brain could cause problems with thinking and memory. Recently, they have found that chemo is linked to some of the same kinds of problems. Research has begun to show that some cancer drugs can cause certain kinds of changes in the brain. But it’s also showing that chemo is not the only thing that can cause problems with thinking and memory for people with cancer.
Though the brain usually recovers over time, the sometimes vague yet distressing mental changes cancer patients notice are real, not imagined. They might last a short time, or they might go on for years. These changes can make people unable to go back to their school, work, or social activities, or make it so that it takes a lot of mental effort to do so. They affect everyday life for many people, and more research is needed to help prevent and cope with them.
Here are just a few examples of what patients call chemo brain:
  • Forgetting things that they usually have no trouble recalling (memory lapses)
  • Trouble concentrating (they can’t focus on what they’re doing, have a short attention span, may “space out”)
  • Trouble remembering details like names, dates, and sometimes larger events
  • Trouble multi-tasking, like answering the phone while cooking, without losing track of one task (they are less able to do more than one thing at a time)
  • Taking longer to finish things (disorganized, slower thinking and processing)
  • Trouble remembering common words (unable to find the right words to finish a sentence)
Doctors and researchers call chemo brain “mild cognitive impairment.” Most define it as being unable to remember certain things and having trouble finishing tasks or learning new skills. But some doctors call it chemo brain only if it doesn’t go away or get better over time. How long it lasts is a major factor in how much it affects a person’s life.
For most people, chemo brain effects happen quickly and only last a short time. Others have long-term mental changes. Usually the changes that patients notice are very subtle, and others around them may not even notice any changes at all. Still, the people who are having problems are well aware of the differences in their thinking. Many people do not tell their cancer care team about this problem until it affects their everyday life.
For someone who has lost some brain function, even short-term problems with thinking and memory can be scary. Some people may have trouble remembering simple things, like closing doors or turning off lights. Others may notice that their brain doesn’t work as quickly as it used to. These kinds of brain problems can cause trouble at work and at home. People who notice problems with their thinking may feel even more upset if their doctors blame it on aging or act like it’s nothing to worry about. It is distressing to wonder if you’ll ever be able to do your job again, or if you will get lost on the way to a place you’ve been to dozens of times.

Mahalo to the American Cancer Society for the above information....

I also just now learned per
It's called PCCI.....

So, yeah......cancer's REAL folks.....not all of "us" get it, not all of "us" acknowledge it...
I unfortunately am experiencing it and am very aware of it's "presence".....sure it's good fun at times and I for sure have joked about it...
My experience, so far, is for sure having periods where it is difficult to remained focus. I have found myself rite in the middle of a conversation and BAM....I completely forget what the conversation was about....I know we were talking, but all of a sudden I am clueless as to what we were talking about.
I can remained focused and involved in a conversation but then shortly after its over I completely forget what was said....I usually know what we were talking about, but then forget the details. I now, if having  a "important" talk, write everything down as we make bullet points during the talk, so afterwards I can remember what I am supposed to do, where to be, when to be etc etc......
This I think is getting a little frustrating for folks when I have to ask them three or four times the information they gave me during a conversation a few days ago.
For sure it is only the short term memory that seems to be affected long term memories are PERFECT and have loved the reminiscing I been doing lately with friends and many great memories.
For me, chemo brain has made it for sure difficult to "multi-task"....If I am doing something, I have to focus on that one thing....most times if I walk away or shift my focus I forget the one thing I was doing and start something completely different.
There have been times when I come to a realization that I have 4-5 different things started and going at the same time, none completed.
Best way to describe it....would be like if I got up and walked away from laptop rite now like to go toilet or something like that, in a little while I'll be in the other room folding laundry, then later I'll come in the office see the laptop on , middle of blogging rite there and then I will remember I was on the laptop before going to's like the amount of time it took in the bathroom the thought of being on the laptop just a minute or two before is just gone...and I come out of the bathroom with a clean slate....there's no standing around scratching my head wonder what it was I was doing......I just come out and go about doing my "stuff"not realizing there was a task I was doing before going in bathroom.
Does that make sense????
This has gotten to be a big challenge for some reason with my using the stove............there's been a few times when I have started cooking or heating the tea pot and walk away, get distracted and completely forget the stove is on.....luckily I can usually here the soups bubble over or smell food burning.....had a issue with my tea pot, didn't realize the whistler wasn't working.....put tea pot on stove set at high, forgot it was on....all the water evaporated and there it was a metal tea pot empty getting HOT sitting on the stove burner set at high. Luckily I went to do something at the sink and felt the heat coming off of it, turned the stove off and when it cooled off threw that teapot in the rubbish...mahalos for the new tea pot Laurie!!

Recently it was turning the stove on to heat up the teapot (I drink A LOT  of tea these days) never realizing I turned the wrong burner on, cause was doing something else at same time...went into the office, no worries cause the whistle going to blow when ready....the I hear a SMASH

The burner I turned on was the one that the "drip dish" was sitting on.......thing got HOT nuff to shatter the dish
YES I have agreed that now when the stove is on I am focused on what I am cooking, conscious to stay right near it and FOCUS!
Sure it gets getting "everything ready to go"......which means when I leave the house, have to remember to have the to-go hand sanitizer, wallet, phone, long pants, long sleeve shirt, sweat shirt and beanie...if not already wearing it have to have it for backup, never know when going to get chilly and back up drinking water/coconut waters/tea..... and its not until I am in the car leaving or already on the road before realize I left something or all of it home....
I have tried to have a to-go bag ready but when I do remember to bring it, I get home put it somewhere to refill what I used...forget to then its just a empty bag that gets unpacked later or put away....and I tell myself to triple check that I have everything I need, but usually space it out somewhere between reminders 2 and 3.
I am aware of this all and am very conscious of it when I am a days I sometimes don't even turn the radio on just to make sure I stay focus......
Hard to describe, its not like I drive somewhere "snap out of it" in a parking lot all "how the fuck did I get here" know like Hollywood style....its more going past where I was meant to go, being in the wrong lane stuff......there was a little incident of a "space out" while turning and the wheels of jeep wound up on curb when I think I spaced out........YES YES, I have sworn to if there is another incident like that I WILL let someone know and "turn in my keys"........

I can sit and watch a movie no problem....but if pick up the phone to check emails or fb or something....a whole lotta time can go by that I forget the movie is on.....plenty rewinding if not focused.

This blog is in NO WAY meant to be a "pity party" reason for blogging this is not because I need anyone feeling bad for's because this stuff needs to be out there and talked about....I knew nothing about it, no one "warned" me about it when they went through the list of possible chemo side effects.......Approximately 20–30% of people who undergo chemotherapy experience some level of post-chemotherapy cognitive impairment and no one warns you about it???
I luckily am aware of it and am "adapting" things as necessary......NO I don't need post-it notes saying "fork" "spoon" "toothbrush"........again stop with that Hollywood image you just had in your head!!!!
I just need to periodically remind myself to focus, make myself aware of being distracted/called away from a task.......stop, breathe, focus....not get frustrated......realize that in my case my "chemo brain" does get worse when I get myself tired/run down....

Just like everything else .....I am learning to adapt
Just like everything else.....praying that this is all gone soon!!!

So again thanks for sticking by me as I navigate this new reality of mine, thank you for all of your kind words and support about this blog thing.....


thought it was interesting and not sure if you can see it.....but that "blue dot" that looks like some kind of jewelry or something at my sternal some sort of blue light....a "reflection" of something ....a weird photo lighting thing......what is WEIRD  to me is this is the exact spot where the swelling started back in January that was my sign from my body something was wrong....and it was the swelling going on right at that spot that eventually got my ass to the emergency room and.....well...the rest you pretty much know by now....
just thought this was interesting and worth sharing....

1 comment:

  1. Thanks for sharing Patrick, really explains alot. When my mom went through it she would call me and say I cant remember how to turn on the stove. Of course I assumed it was the cancer spreading and rush her into have a scan to see if it spread. There were other little things to. She was very frustrated. But Im glad you are aware of it. Know one told us. Ellen