By
Idelle Davidson
It's right there on the tip of your tongue. It's a word that has a "ka" sound in the beginning and a "tah" sound somewhere at the end. And you can almost see it, but then darn, it's gone. Perhaps later, when you're rushing to slap dinner on the table, that stupid word, so maddeningly elusive just hours before will pop right into your head, as if it were all just a silly misunderstanding between you and your brain.
I'm guessing that if you've had chemo and have experienced the fog that often follows, then you know what I'm talking about, right? It's not that you can't comprehend language, it's that you can't retrieve it. It's like the arcade game with the crane where you try to scoop up the two-penny plastic key chain and then five-dollars-worth-of-quarters later, it's stuck in the chute.
In a 2006 study of the psychosocial side effects experienced by 26 women undergoing chemotherapy for breast cancer, language (including fluency, verbal repetition, reading, and writing to dictation) was the most severely affected cognitive process, followed by memory. (Source: F. Downie, Psycho-Oncology 15 -2006: 921-930). That's not entirely surprising considering that chemotherapy not only may affect language but the speed in which we process information.
One of the people I interviewed for "Your Brain After Chemo" had this to say: "It is painful when people look at me with confusion while I am trying to talk. I know that I'm not making sense, and I don't know how else to talk. When it happens I die a million deaths and feel very dumb."
Have you experienced word retrieval problems during or following chemotherapy? Have you found ways to compensate? If so, what works for you?
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Dysnomia is so common, even now, 6 years after chemo. I used to be an English teacher and have no desire to teach again knowing I'll be too tongue tied to get through a day w/o incident. I don't want to look "stupid" in front of the kids so I can't go back to the one thing I loved. I can't even read for long periods of time w/o stopping and summarizing because my brain shuts off after awhile and I don't comprehend what I'm reading. It's still so frustrating!
ReplyDeleteYes, difficulty retrieving names, places, objects, was one of the most common complaints I documented in interviewing survivors for our book, and as I've said, I've struggled with it as well. It's maddening!
ReplyDeleteIf you currently were working, I'd suggest asking for workplace accommodations. (See "Is Chemo Brain a Disability Under the Americans With Disabilities Act" on my blog at: http://yourbrainafterchemo.blogspot.com/2010/10/is-chemo-brain-disability-under.html).
BUT...do you really, truly need to give up what you love? Perhaps you could find ways to use strategies in the classroom where you rely more heavily on prepared notes (or "cheat" cards) or Power Point-type presentations. Dr. Rob Ferguson and other experts specialize in workplace adaptations and may be able to help you with this).
And if you simply can't go back to the classroom but still would enjoy working in a school environment, perhaps you could find more of an administrative job where you might have more control over how you communicate (relying more on emails, for example).
And finally, don't give up on your word retrieval and comprehension skills. Our brains have the ability to heal and grow new pathways. Just because you're having difficulty now, doesn't mean it will always be that way.
I'd love for others to comment and offer their suggestions.
I just saw this, probably too late to say anything, but I participated in a study a few years ago that helped get rid of my chemobrain. It was a brain training software by Posit Science. They now have a subscription only version, which has all the exercises that were in the study software that cost over $400. It's called BrainHQ. The subscription is $99 for a year. I have been doing it steadily while I am now going through another series of chemos and I only have cheobrain while I take the drugs. As soon as I am off, the haze lifts. Maybe it's not too late to try for your other readers.
DeleteI had no idea this was so "well known". Unfortunately, I got no prior info to my cysplatin treatment. Classes were "suggested" but I'm a tough guy and figured it was no big deal......two+ years later, how wrong I was! I've commented to numerous folks about my short term memory "loss" (it's fragmented, like a jigsaw puzzle; so it's not all lost, just random parts). But I'm well-respected and a biologist, so people believe me, mostly. Most important is that I've been able to explain to folks that what's happening is real; that I don't know a lot about it, but it's REAL; and that, when I hit a "hole in the sentence", I'll ask for help. I'm constantly asking my girlfriend to fill-in-the-blank. We'll be having a conversation and all of a sudden, the word I need is gone. At first I was in a panic; now, I just calmly turn to her, smile, and describe/define the word I'm looking for..e.g. "Dear, what's that thing with wheels we haul the dirt in?". Oh yes, a wheelbarrow; thank you." And I carry on with the story. I do this as well when we are with a group, and enough of our colleagues/friends have witnessed it that they've come to accept it. It's been going on for over a year, and I've gotten so good at describing the word I want, and Kathy at providing it (we both love words so it's almost like a game, and she's very good) - that we hardly bat an eye. I was pretty freaked out at first. I still get a little frustrated, but just a little.
ReplyDeleteHi Johnny,
ReplyDeleteTwo observations: One, you have a dynamite girl friend, and two, you have found a way to handle your word retrieval issues with big-picture calm and good sense (and if you could share some of what you're having with me, I'd really appreciate it (-:).
I am much better at finding words than I was right after chemo but it still happens on occasion and it's maddening. From now on, I will think of you and your no-big-deal way of navigating right through it.
Other people have described their word retrieval problems as like a jigsaw puzzle too (or like folders in a filing cabinet and they're all mixed up). The pieces are still there, just not in the right order or not easily accessible. In a way that's kind of comforting (at least to me), because it means we haven't lost the words, they're still there. And if they're still there -- and because I know our brains have the ability to heal -- then there is hope that we can improve, even regain our word processing function.
Thanks so much for writing. Please come back and share your insights anytime.
Wow, it's cool to come upon your blog. I'm a writer and literature professor who had stage II Hodgkins disease and four months of ABVD. I'm five years clear of cancer, but still lose names. I mostly just blow it off and tell my students I'll remember soon, or ask them to find the name (critical thinking!) but it's frustrating. Stranger, though, is that I wrote a lot of poetry before chemo and recently I've completed my first novel. I think there's clearly a shift there. Dysnomia is worse when I'm tired but it concerns me anyway.
ReplyDelete