Wednesday, December 11, 2013

Chemo Brain...Uncovered

Hello again world,

Here we are nearly two weeks away from Christmas and almost 3 months since I finished treatment. Both have creeped up on me unsuspectingly and it feels like time is truly flying by. I am still working and it is good but also very challenging. I am discovering that - thank god I still have a brain that has good ideas and can perform but I am also seeing that my newly established limitations are frustrating. I know I am not the same girl I was in my 20s who loved working long hours and getting to the office first despite having been out partying til 4am on a Tuesday night! But before this latest round, I had more endurance and could just do more. Of course my priorities changed after having my monkey but I remained driven and motivated. However last week, I worked two days in a row and was so tired in the evening that my husband found me sitting upright in bed with my face firmly planted in my Ipad. I never pass out ever when I go to bed so it was a sign that the ol´body was dealing with a new set of challenges and it was struggling. I am also noticing some symptoms that can be classified as "chemo brain" - a condition that has been debated alot in the cancer world. Some people (doctors included) don´t agree that it actually exists and that it is more psychosomatic then actually a physical condition caused by the chemicals. You know us cancer peeps - anything to milk the sympathy card longer! (just kidding). But in all seriousness - I am feeling more and more of these so-called afflictions.

The Mayo Clinic defines chemo brain as:
Chemo brain is a common term used by cancer survivors to describe thinking and memory problems that can occur after cancer treatment. Chemo brain can also be called chemo fog, chemotherapy-related cognitive impairment or cognitive dysfunction.

Let´s see...

I used to be a supernova in the morning who loved to get up early to ensure I had time for sun salutations, my multistep hair straightening process and getting my child looking "picture perfect." However these days, I am struggling with the daily grind and heavily depend on Disney Junior to buy myself enough time to cram everything in and I take more then double the time to do even less then I did previously. And the stress and frenzied nature which I do everything does nothing for my irregular heart beats! Like a chicken with its head cut off people.

frustration.com - I have prided myself on my consistent mood and high level of patience pretty much my whole life. That is what works with my husband and I - we balance each other in terms of our moods. I rarely have changes in how I act, feel and react. I am not an emotional desert but I dont get as emotional and irritated and it definitely comes in handy when dealing with a toddler. However these days I feel myself wanting to scream over the little things and get angry when I fubble with something or can´t get the frickin´carseat sorted. It is a new feeling for me and I don´t like one bit.

Brain freeze: We all have moments when we forget things - it happens to everyone. Unfortunately my frequency of forgetfulness has increased dramatically as of late. If I had a kronor for every time I said "hang on a minute, I can´t remember that name, thing, place....but it will come back to me in the next 30-45seconds" - I would be sorta rich in a coin kind of way.  Sometimes I find those missing words but other times they seem to be on their way to neverland and never come back. It makes me anxious as I don´t know if my mental sharpness and quick witted nature will ever be the same or will I forecer coast along on slow mo?

Let´s talk about Focus: Okay I have never been someone who accelerated at math or complex problem solving nor do I like to do things I find boring. Who does really? But these days my avoidance of doing difficult things that are unpleasant is even worse. I delay everything because it is just so bloody hard. And I even delay things I want to do like sending an email. returning a phone call or finishing a project. The intent is there and I feel so much guilt over not doing it but I still don´t do it.  I only have the capacity to do one thing a day really and sometimes I don´t even get through that. So no - it is not personal. :)

Fatigue:  I am not sure this actually technically fits into the "chemo brain" box as it it more of a physical affliction but I feel that my fatigue contributes greatly to the things I listed above so definitely worth a mention. Fatigue makes all of these so much worse. And boy am I dealing with fatigue levels that I have never ever known (and I was a swimmer for years who woke up at 4:45am so I know tired). I wake up exhausted and sore no matter how early I went to bed. I need to lie down and rest every afternoon or else I fall apart mid evening to the point of collapsing. Seriously - forget Sunday mass, naps have become a devout practice that cannot be missed. And when I get tired things hurt...alot. A few weeks ago, I attended my work Christmas conference and party and suffered from debilating chest pains for the next week just from a lack of sleep. Honestly where did the jagerbomb girl go that we all know and loved? Oh yes that is right - she got cancer! And by the time I have done everything i need to do in the evening, I hobble around like an old woman with aching joints from the temporary arthritis chemo gave me. It is hard not to get pissed off about it all and tell the silver lining to fuck off! I want my old self back stat Roger!

So following the latest round in the ring with the C- monster,  I am now a firm believer in the existence of "chemo brain" and all the associated issues that come with it. I feel for all of those who have experienced it and for those who are still wading the deep waters of it. Doctors still don´t know very much about it and research has only just dipped its toes in the water regarding it. I hope we find out more and discover new ways to treat it and more importantly properly recognise it. For those of who have been through it, what are your experiences?

Hope everyone is enjoying the holiday season. Someone please have an eggnog for me!

OBB xxx

10 comments:

  1. OBB! Chemobrain is very real, even in those who didn't have chemo! I wish I could find the study to cite, but I read in a reputable publication that just being diagnosed with breast cancer diagnosis causes a mental fogginess to settle in. It's almost too much for our brains to deal with. Compound that with going through chemo (which I did *not* do so i cannot add comment to the mix there), and you have a recipe for forgetfulness.

    I've also found the anti-estrogen drugs (I was on Tamoxifen for 2 ½ years, and recently started Femara) also cause a fogginess to settle in. At least that's been my experience.

    This is a great post and I'm going to Tweet it for you, there are many out there in Twitterland who can relate to what you're going through and have much to add to the conversation.

    PS I will definitely have an eggnog for you! ;-)

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    1. Hi Renn, You know another area that has suffered from all of this? My lack of responses to peoples thoughtful comments. Another thing sucked into the cancer vortex, never to return. Thanks for further validation of all the things I am feeling and for the twitter love. You are simply wonderful my friend. All of this is just so very frustrating. Like this weekend for ex - I love hosting and doing things especially round the holidays but after pushing the gauntlet this weekend, I was flat out in bed all day today feeling utterly awful. My body just says NO! Hard to accept our newfound limitations. I do try to focus on fact that it has to improve. I hope...They dont have eggnog in Norway and it is one of my favs (though after chemo tummy troubles maybe I wouldnt even be able to handle it anymore) so please drink lots (with some rum - oh go on!) and lots of othe yummy treats I miss so much. Are candied yams popular in your neck of the woods? Happy holidays my dear xxx

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    2. Yes I'll take rum with that egg nog please! (What are friends for?) Yes candied yams are popular and that is one of the things I was in charge of making at holiday time since I was a small girl. Oddly, that dish also calls for rum… hmmm, seeing a theme here… I'm glad you are listening to your body. The lack of energy is ginormously frustrating. Do what you can, leave the rest, the only people who really notice what we don't get done? Us. The past year has been enlightening for me and, without even being aware of it, I am simply doing less this holiday season and it is simply AWESOME! Highly recommend it. Sounds like you are already doing it too. Ha! {{{hugs}}} and Happy Holidays right back at ya! xo

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  2. Yup! Chemobrain is real. I have chemo brain. Then I got fibro fog. Now i forget everything! I can't remember the names of people, objects in the grocery story, and everything else! good luck! Write yourself lots of notes and let yourself laugh about it. My husband always makes fun of me when I forget things and we giggle and get on with life. It makes it easier to deal with.

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    1. Hi Caroline, Always nice to meet another sailor in the same boat. It is kind of like the Memento movie if you remember it where he had to write everything down on little post its everywhere. I agree with you that humour is a good strategy and that I am better off finding the funny in it then wishing it were different. OBB

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  3. I think AnneMarie Ciccarella had found a study or some results recently that were supporting the reality of chemo brain. But even without that stuff, it's real because so many people have expereinced it. You are so not alone. ~Catherine

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    1. Hi Catherine, I feel like I perhaps have read something about it via her. It seems like they dont address this at all here in Norway and my own doctor is very dismissive of it. It isnt even discussed with patients as a side effect. I am happy with my treatment here but sometimes I feel that the mental psychological side is ignored at times. Thanks for the support

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    2. Here is a link to some chemo brain resources on AnneMarie's blog: http://www.chemobrainfog.com/p/information-links.html

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  4. I completed my last chemo treatment 8 months ago. Chemo brain has really effected me in the worst kind of way. I can't finish anything I start, I put off the most simple tasks and I have a horrible memory. I am 41, educated and in unfamiliar territory. I am also on Femera. I hate feeling this way! My boss is losing his patience with me and where he tried to be understanding during my treatments, he isn't so much now. And when I talk to non-cancer people about it they make comments that just make me want to slap them. Their "senior" moments don't even begin to compare to chemo brain. I'm just so fustrated. Sorry for the rant...

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  5. Rant away my dear. This blog is definitely a safe place for doing so. It can be so challenging and frustrating. Especially as people who havent been there often dont get it and think we can just snap back into things instantly. Just do your best and screw everyone else. Chemo brain is alive and well.

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