Insane in the Chemo Brain: Insane in the Brain!

by Hannah StarkeyFebruary 14, 2019View more posts from Hannah Starkey

Editor’s Note: Hannah was diagnosed with Hodgkin’s Lymphoma at the age of 24. She quickly found herself unable to cope and accept her illness. Hannah started her own blog thehword.org to be able to send her words into the inter-web so that its there for others and herself. Hannah hopes that the words written within her blog and articles reaches those who needs answers to their questions, just like her.  Hannah shares what she experienced and how she has coped with it. This article originally ran on Hannah’s blog.  Hannah has joined The Herd as a contributor.

I was supposed to start my second to last cycle of chemotherapy on January 18th. But I had an appointment with Dr. B (my oncologist) and she didn’t like the way I looked and was suspicious that I was ill. I felt kinda shitty but not enough that I felt super sick. We pushed chemo back a week because its dangerous for me to receive chemotherapy while my immune system is fighting infection. Dr. B decided that its better safe than sorry. I’m disappointed cause I wanna be done.

Right now, I’m holed up during this snow-pocalypse we are experiencing here in Northeast Ohio. And I have a very nasty cold.

But its cool, even though I’ve been laying low most of the time, I recently had a night out and had a great time.

Hannah

Lots of difficult things have happened to me and you know its been rough. By far the worst symptom I experience is a phenomena called chemo brain. I’ve had a hard time explaining it due to chemo brain and the fact that its just very weird. So I’m gonna try my best to explain it to you all.

I’ve had all the symptoms there are, and its a long list. I was prepared for it, ya know? I expected the nausea, exhaustion, loss of appetite, etc. I thought, I have drugs to combat any symptom that comes my way. And for the most part I’m pretty good about staying ahead of my symptoms.

I spend a lot of time stationary, but I have a lot of hobbies. I crochet (yes, I know, old lady and yeah my pajama game is strong right now so most of the time I’m in a night gown and robe being a grandma) I sew, I read, I’m re-learning to play the guitar, I play the hell out of the Sims 4 on my Mac. I draw and sometimes, craft. I used to write my deepest thoughts in journals or diaries until I decided to share my writings with you all. Now I’m a blogger, I guess. (who’d a thunk it?)

The point is, I try to keep busy and I try to keep my mind active. For a while there, I started to feel like Tom Hanks in Cast Away. Or maybe Wilson? I feel ’em both. After that I decided no more. Gotta stay mentally active and as physically active as my body will let me be.

Tom Hanks in Cast Away

Then some weird, wild stuff started happening to me. It all started when I was having a conversation with someone. I was trying to tell her that I got a new type of…what’s it called…uh, that stuff you put on your toothbrush and then it cleans your teeth…uh, toothpaste? Yeah! That’s it! Toothpaste!

WTF. I wouldn’t have been as concerned if I had forgotten something simple, like where I placed my keys. But the name of an item I use everyday? Like, what?

I didn’t really experience chemo brain until I started on the super poisonous BEACOPP chemotherapy regimen. Basically chemo brain is like a fog covering my brain and cognitive abilities. It slows my thought processes, it takes me a while or I’m unable to recover words for things, names, and dates. I often forget simple things like what day it is and my sense of time has faded. It feels like someone has scrambled my brains with a whisk and put them back in my noggin.

It’s like that scene in SpongeBob SquarePants where all the little SpongeBobs in his brain are burning and shredding all the files that represent his thoughts, saved information, and skills.

Seriously, one of the best scenes ever, I love it.

Spongebob Squarepants

Small SpongeBob #1: “Come on, let’s get moving! (talking to a smaller SpongeBob) Hurry up! What do you think I’m paying you for?”

Smaller SpongeBob #2: “You don’t pay me. We don’t even exist. We’re just a clever visual metaphor used to personify the abstract concept of thought.”

Smaller SpongeBob #1: “One more crack like that and you’re out of here!”

Smaller SpongeBob #2: “No, please! I have three kids!”

I’ve read about a few theories from health professionals as to why chemo brain happens. One theory is that chemotherapy damages DNA, sometimes permanently, and slows cognition.

Some say that it occurs because of the large amount of medications that cancer patients are on. I’m on a ton of different drugs. Other causes could be low blood counts, stress or anxiety. Other doctors believe and I also believe that its a combination of all of those things.

Whatever causes it, it sucks. I do trust that when I’m done with treatment, the fog will dissipate.

For days I’ve been thinking about how to best express how my thoughts work and how chemo brain affects me. I struggle to explain it to my close friends and my family.

I’ve never been a poet, but I would say that sometimes I write my thoughts down, kinda like a short story or a long poem. I guess you could consider this a poem. Consider it whatever you would like. I hope that it helps you understand how I feel and what chemo brain is like. Here goes…

Failed Magic Tricks

I’m in line trying to buy my vegetables and pay the cashier but when she says it’ll be $62.48, I shut down.
I remember I have cash and I fumble with it
and I hand her the money and when she says I’m $12 short I fumble some more to count the money
and I feel the eyes of others burning into the side of my head
and I feel the impatience so I take back the cash and use my debit card instead.

Because when she says it’ll be $62.48, I panic.
I panic because I can’t bear to embarrass myself again and I struggle to do simple math and I know I can do it if I can just think hard enough. Wait, what day is it?
I panic because suddenly I don’t know what day it is.

Please don’t ask me what I had for dinner because I don’t remember.
You got me a book of Sudoku but thinking of numbers makes me panic
and thinking makes me panic
and panicking makes me panic
and I forgot what day it is
and I know I just asked you but please tell me again because I forgot.

You’re my best friend and I can’t remember your name
and when I look at you I just see letters flashing across the screen that is the back of my eyes.
You compliment my writing but I wish you knew that most of the time, I struggle to find the words.

But then all of a sudden the words come to me.
I focus and my fingers catch fire on the keys and all of the sudden…I have the words.
$62.48? screw basic math I’m gonna do my taxes because I can think right now.
My brain is functioning and the words are overflowing out of me and for a little while, I’m back…I’m resurrected.

For a little while I get a glimpse of myself.
My skills are back, I can think, I can write to you and I take advantage of it.
I have so much to say and I might have used too many adjectives
but its been two days since I’ve thought
and its like word vomit
and my fingers are typing so fast and zombie mode is off
and I can practically feel the neurons firing and the synapses are synapsing
and connections are being made and I can remember the name of the stuff that you put on your toothbrush before you brush your teeth.

I didn’t even notice that hours have passed and the birds are tweeting
and wow…was that some sort of alternate reality or dream where I never had chemo and I never had cancer and I’m me?
And wow…its 6 am and I got so much done…
how do I make it so that I feel like that always?

And then without warning, I disappear.
and wow… I’m spaced out again and I’m gone and just like that…
a prisoner in my own brain.
Back into the dark forest inside my skull.
Back into the abyss where I’m constantly lost
and what day is it?

I know where I am but why am I here
and wow… I’m forgetful but I haven’t lost my intelligence, right?
It’s there somewhere in the abyss, right?
I’m as lost as my brain.

Lost and wandering through the seven inches of space between my ears
and the echos are so loud
and the words are so close I could touch them
and if I could just reach far enough maybe I’ll find my brain in there somewhere
and yes I’m still me but please for the love of God, don’t ask me to do simple math.

Please don’t be frustrated with me when I ask you what day it is because I don’t want to ask you what day it is.
I’m trying so hard to pay attention to you
and I’m sorry about that one time that I freaked out because I woke up and didn’t know where I was
and I cried because I was embarrassed
and I cried because I want myself back
and I cried because I want my brain back
and I cried because I don’t want to have to keep asking you what day it is
and if I could only get my brain back, I wouldn’t be crying.

Then its 11 pm and I remember what day it is
and yes I know that its Friday
and its time for chemo and i’m back at square one…
no, its Saturday and bright red liquid enters my veins…
and i forget what day it is…

Thanks for reading, stay tuned.

xoxo

hannah