Chemo Clutter

Every spring, I get so excited to clean out the winter clutter.  The piles that accumulate every at Brookside are…well, embarrassing. But every spring, when the birds are chirping and the flowers blooming, like clockwork, I begin to dig out and organize.

Martha Stewart has a fabulous spring cleaning checklist. Do you think I should let her know that she omitted one important thing on her list: Chemo Clutter?

Chemo Clutter has many different descriptors: chemo brain, chemo confusion, mind fog.  All are terms that describe impairments in cognition resulting (at least in part) from chemo. Fatigue, estrogen deficiency, sleep cycle alterations, and depression are experienced by many chemo patients, and are likely causative factors that can be used to explain chemo brain.

What does this look like, you ask?  Well, this about sums it up:

And now let me (try to) articulate the component of chemo brain.

Attentional fatigue.

This fatigue is IN ADDITION to the fatigue that I described yesterday.  Over and above.  Attentional fatigue is experienced when the demands for directed attention exceed my capacity to handle them. For example, I start twelve things, complete none and forget where I was.  All in a 15 minute time period.

I have a really hard time finishing things that I start, which is especially frustrating because we are trying very diligently to encourage Finally Five to finish projects, books, etc. that she begins.  I’m a big believer in actions matching words. Well, in my current state, my actions barely match the words (that I often cannot find). It is one hugely frustrating situation.

Decreased concentration

Here’s how the banter in my brain goes:

Focus.

On what?

Focus!

Did you see that leaf float by?

Focus!!

Huh?

Focus!!!!

I could really use a massage.

If you don’t focus, I’m outta here!!!!!!

Outta where?  What are you talking about?

 

This bothersome banter goes on ALL. DAY. LONG.

Essentially, there is little to no focus whatsoever (I’ve started and restarted THIS post 5 times already…now make that 6.). My mind wanders to the most random and seemingly futile places. Tonight, the HOTY asked me what I was thinking about and the best answer I could give him was “everything and nothing.” Ever tried that?  It’s enough to make you feel really cuckoo!  People magazine is sophisticated literature that I can barely finish before the next week’s issue is out.

Ok, where was I?

Short- and long-term memory loss

CRAFT (Can’t Remember a F-bomb Thing) is the thing that is the most upsetting everyday occurrence.  Not being able to remember names. People. Places. Events. I was out last week talking with a friend whom I’ve known for years and: Could. Not. Remember. Her. Name.  The stress of that memory loss brought on a big hot flash.   The whole thing was a big F-bomb mess!

I used to be the girl who could remember anyone’s name after only one meeting.  Unfortunately for the HOTY, he came to depend on my masterful ability.  When he asks me now, I just look at him with an:  “Are you F-bomb kidding me?” look.

The other day I was driving home (don’t ask me from where) and I forgot which freeway exit to take to get to our house.  Seriously.  Freaked me out.  I took a few deep breaths, pulled myself together and made my way home.  Phew. Perhaps I should put one of those GPS devices in my ear and tattoo the HOTY’s phone number on my bald head.

Today, it took me 5 tries (ok, truth be told it really took me about 8 tries) to put on Finally Five’s bathing suit (the kind that has the criss-cross in the back).  I could not remember for the life of me how on earth to put it on.  And when Finally Five said, “Mommy, you’re usually really good at putting on my bathing suit” I about burst into tears. I can’t make this s**t up!

Disorganization

I have always prided myself on my organization skills.  I’m the girl who alphabetizes her library. Every lecture I’ve ever given is filed by date. I have been in a long-term relationship with a label maker. The clothes in my closet are hung by style, color and season.  Full disclosure here, I know.

Not anymore!  Books are stacked high.  Haven’t given any lectures. The label maker is dusty (which is akin to sacrilege).  And my closet?  Piles. Everywhere.

The thing about disorganization is that it fuels my memory loss and lack of concentration which then fuels more disorganization. Get the vicious cycle?

Difficulty with arithmetic skills

Ok, as if mine were not already bad enough.  Tonight as I was saying goodnight to Finally Five, she asked me how much “0 + 0 equals.”  The kicker:  I had to THINK ABOUT IT.  Process it.  Fortunately, she said, “Mommy, I’m just teasing you.”  OMG.  Finally FIVE thought it was a joke, but I was trying to figure it out.  Enough said.

Altered language skills

Here’s what this looks like.  Either words don’t exist…literally can’t be fabricated for the life of me.  Or the words float around in my brain (like flies) and can’t get out.  Either way, I stand across from someone glassy-eyed and unable to speak.  Always on the verge of drooling.

I used to be a good conversationalist, if I do say so myself.  Now, not so much.  I literally don’t have words. The good news, though, is that I can (and do!) smile, which is a Silver Lining.  I may look like and feel like an idiot, but I still manage to be happy.

———

Cognitive impairment has truly been the most frightening aspect of FBC because it has impacted my fundamental abilities to think, problem solve, follow directions, and make decisions. When you think about it, cognitive ability (or lackthereof) is a huge factor in defining who we are as individuals.  Having my cognition altered to radically has made me feel incredibly vulnerable. (F-Bomb!)  Another bit of not so good news is that these impairments can last for YEARS, so many cancer patients have to find ways to incorporate this into their lives.

So, where do I go from here?  Well, let’s look for some Silver Lining tips to help with this nonsense.

Research at the University of Michigan has shown not only that chemo clutter exists but that it is probably compounded by stress and fatigue. Exercise, yoga, meditation and spending time in nature have a measurable impact in reducing fatigue. In addition they recommend lifestyle approaches that can be considered to lessen the impact of chemo clutter:

  • Focus on the priorities that are most important. Delegate tasks or leave other things undone. (I’m already a professional leaver-undoner!)
  • When approaching a task that requires a lot of mental energy, break it down into smaller goals. (This is, of course, assuming that you remember the original task after trying to break it down.)
  • Don’t try to multitask, especially in situations where it could be dangerous, for example, when driving or while cooking. (See example above, though I don’t remember if I was multitasking.)
  • Schedule the day in advance. Having a structure will help complete tasks. (I carry my calendar around with me EVERYWHERE!)
  • Rely on family and friends to help. (I’ve definitely learned to do this. Silver Lining. The gratitude for my friends and family is beyond words. Oh that’s right, I don’t have words anyway!)

I believe in my heart of hearts that the words will come back. The memory will come back. The fatigue will dissipate. (Can’t speak to the arithmetic skills, though.) I know that life will indeed return, which is the Silver Lining that I hold most dearly.

This is the gift – to have the wonderful capacity to appreciate again and again, freshly and naively, the basic goods of life, with awe, pleasure, wonder, and even ecstasy.

– Abraham Maslow

 

 

 

Leave a comment

Comments

  1. Nicole says

    This so perfectly describes exactly what's going on in my head right now (having just come home from round 15 of chemo – a regime of 4xACs + 12xTaxols). ONE to go. Ironically I always thought the following were my best attributes, in no particular order; hair, boobs, mind, ankles (nothing remotely kankley about em). FBC indeed… You can't take away my ankles – SL!

  2. says

    I love the quote from Abraham Mosley. So true, so touching and inspiring. Don't worry with the things that you are not able to remember or do right now. With the help of your family and friends, the silver lining… will return.

  3. Kim says

    I experienced the brain fog too. It's a bit scary, especially when "out there in the world" trying to carry on conversations with a beginning and an end. ha ha ha It will clear, but you might find a change in priorities with the clearing, as so nicely said by Caroline. I love your sense of humour! Charlotte Moss is great! Thank you – Mother's Day is coming and it's going on my wish list.

    • Caroline Pereira says

      Hi beautiful girl! I was laughing as you described how I live everyday… just normally! I like to think of it as just being. I leave off the being "ditsy or unorganized or foggy", etc. I am just being!!! Doesn't that sound much better?! You know, people like us (I am now including you, my brilliant friend, in my la la land because ding dongs love company-it's much more fun this way!) well… I like to think we see the silver linings for longer amounts of time because we are processing slower; thus, leaving no brain power or energy left for dwelling on the bad stuff!! I like this quote from Eckart Tolle, "When you don't cover up the world with words and labels, a sense of the miraculous returns to your life…a depth returns to your life. Things regain their newness, their freshness." When we hang out we may not accomplish a lot, but we can sure love it anyway!! Your smile and laugh is enough for me. Thinking of you everyday. xxx

  4. Carrie Riley says

    Hollye,
    It's great news you are feeling better, bit by bit. Bad news you are still in the "fog" and chemo clutter. A very close family member in my "family of origin" suffers from very, very serious chronic depression and fatigue. What I have seen from the outside is that her mood is only one component of her illness; the ongoing fatigue, mental fogginess, forgetfulness, inability to make concrete plans because she doesn't know how she'll feel on that day, these are the parts of her illness that many people don't understand and leave her feeling so isolated. I spoke with her today and she was so saddened by her plans being foiled again- her big plan for the day was to plant part of her new veggie garden. Had the plan. Bought the plants. Turned the soil. Forgot where she wanted to put the plants. Went back inside to get a drink of water and a bite to eat and was suddenly stricken with that bone deep level of fatigue you reference. So, back to bed before noon, no garden planted, while her mood is stable she can't lift her head off the pillow. Argh!!! While sounding incredibly cliche, I repeated to her what she has told me all my life when things are tough, "this too shall pass". One day at a time. All those brilliant little neurons are still there, just moving a little slower right now….be patient with yourself. Be kind to yourself. Let the clutter go. Don't worry, there will be always be things to label and organize and this foggy, tired, confused world you are living in is NOT your new reality. You're on your way back…and all the "re" words you shared yesterday really are a list of what we all should look at every year when we do our spring cleaning; physically, spiritually and emotionally. And remember this one: Rejoice.