Monday, December 9, 2013

Chemo Brain


Just so you know, when I stumble over my words and struggle to get them out, I may chuckle, but it’s not funny. That chuckle is to keep from crying.

I am nodding to you as you share something with me, not because I’m understanding, but because sometimes, I am a little embarrassed to say to you, again, to repeat yourself, especially when everyone around me seems to understand what is going on.

I take longer to read sometimes, not because I am a slow reader, in fact reading is one of my favorite hobbies. I take longer because sometimes, I have to read a page 3 times before I can retain what is going on. 

I will forget something that you may have told me a few minutes ago, the day before or even a week ago. It’s not because I don’t find you or your words important, but it’s because my short-term memory is now full of holes that I am trying to learn how to fill.
Please don’t tell me how that happens to you or how you forget things all the time. This isn’t forgetting things; these things are gone from my memory. 

Stopping in mid-sentence because I have lost my train of thought. 

Scrambling to piece through snippets to try and recall what someone is standing in front of me talking about, so that I can respond with what they need to hear or with the proper answer.

This is just a small sample of what it’s like to have chemo brain. Over the past few years, I have tried to laugh it off when something happens when I’m speaking to people, but it’s not so easy anymore. The hurt and frustration is getting bigger as I get farther away from treatment without any improvement. In fact, it feels as though things have gotten worse.
Yesterday, my frustration was very high. I could not understand what I had read several times and it took longer than usual to type up a paper. I logged onto Facebook to vent to my fellow sisters, who I knew would understand, when I noticed one had just typed about the very same thing. I cried. I cried with defeat, because it feels like this will never go away. I cried with relief, because I am not alone in this hell. 

She just participated in a study at Yale that is focusing on chemo and the effects on the brain. I pray that they find something that can help us move on in some type of normal way.  

I’m lucky in a way. I have my husband who seems to understand. He doesn’t laugh when I fly off topic, lose my train of thought, or am unable to follow his conversation. I have my parents who patiently wait while I try to muddle through my topic. I have my daughter who has finished sentences for me to help me get back on topic. I’ve noticed that my 13 year old son has started to do that too. I’m grateful for them.

I’m grateful to have an oncologist that understands and who is awaiting my phone call to set me up with a speech pathologist. I will be making that call today. 

So please, the next time I stumble on my words, lose my train of thought or ask you to repeat yourself, please don’t laugh at me. Don’t judge me as being inept or assume that I am joking, just respect me for my changes that have occurred and support me on my journey.

8 comments:

  1. I hate chemo-brain also, I can't read anymore and have to write everything down, that's why I like to read in English (my language is Dutch) so my brains have to work.
    Greetings from Belgium
    Hillechien

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    1. Yes! I have gotten to where I am writing a lot of notes to myself, so I remember what I still need to do.

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  2. So many of us have been there, Angie - you'll get through it! xx

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    1. Suzan, I know quite a few women who it's getting better for. I'm happy for them, but can't wait until it's me. It's been several years since chemo and it feels worse sometimes. I did not have to do chemo this time around, but my onc thinks it may have been the stress of the new diagnosis that is making it worse over the past few months.

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  3. Oh Angie thank you so much for your fabulous post. I can empathize with your pain and now understand so much more about my own symptoms from chemo brain. Sometimes I feel as if I'm losing it. I'm so happy you have an understanding and loving family by your side. Know that you now have faraway friends who care about you as well. Take care!

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    1. Thank you Angie! Ugh, I really hate the effects of chemo. I find myself writing a ton of notes for myself, but sometimes it can get to the point that I forget the intention of my note. It is very scary sometimes and even worse if you're not sure what is going on.

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  4. Maybe this explains a little of what is going on with my son. He is 8 and a brain cancer survivor. In addition to chemo he has had brain and spine radiation. He stumbles over words a lot and has real trouble retaining stuff. As parents its hard because he can't really tell us what the problem is and frustrating because we don't know if he is purposely ignoring our instruction or just doesn't understand what we are asking of him. He is in 2nd grade but is working at an early kindergarten level....school is getting really hard for him..

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    1. Proud momma, that may be it. What has his doctors said? It is the worst feeling for me and hard to get people to understand. I can't imagine what it's like for him. Chemo leaves a horrible wake behind it. It does the job sometimes, but ugh, recovery is not fun. Your little guy is in my prayers. How is he now?

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