I’ve just completed a 4-session workshop on chemo-brain. It was extremely informative, but I have to say, the phrase “chemo-brain” seems a little light-hearted to me. It sounds like a Ben and Jerry’s ice cream flavor or maybe a kid’s board game. It’s neither. Chemo-brain is the happy name that’s been given to the serious effect that chemotherapy has on the cognitive function of cancer patients.
Before I was diagnosed, age had already played some tricks with my memory. We’ve all lost our keys, misplaced our wallets and opened the refrigerator door only to forget what we’re looking for. I remember one time, long before my treatment, telling someone that I couldn’t find my cell phone, to which they replied, “You’re talking on it!”
While absentmindedness is certainly one symptom of the neurotoxicity of chemotherapy, some of the other tricks your brain plays on you are pretty tricky.
Here’s what I’ve found:
You not only lose your train of thought, you don’t even know the name of the station.
In the middle of a sentence, I have totally forgotten the subject about which I am speaking. Now, if I plan to have a lengthy conversation, I start out by telling the person that I might forget what I’m talking about. I’ve found it actually makes people pay more attention to what I’m saying. Try it.
You make up words or call things by another name.
My daughter recently left the flat iron turned on. When I mentioned it to her, I said, “Next time, don’t forget to turn off the fire-ling.” It took her a minute to understand what I meant, but it turned out that I’d invented a pretty cool word. And it’s not half as bad as hearing someone say, “Heigth” as in “length, width, heigth.” I’ve already coined a number of phrases in my life like “Frankendating” – the phenomenon of dating several guys at the same time because each has only one decent attribute, e.g. one is funny, one is smart, one is sexy; and “Lilypadding” – when someone jumps into a relationship the second after ending one.
Your words get twisted on their way out of your mouth.
And speaking of getting off the train: When my daughter came up to see me, I asked her if “the crain was trowded.” I actually delight in these crazy twists of the tongue and when it happens, I will repeat them several times.
You mix up your metaphors
Just yesterday, I said, “I’ll burn that bridge when I come to it” and a few weeks ago, “That’s a horse from a different mother.” Well, at least I have an excuse. I remember a friend who was quite brilliant once said; “I’m not going to put all my chickens in one basket.” I guess it happens to the best of us.
You have short-term memory loss.
Frequently, I’ll watch a show on TV or go to a movie and then, the next day, have absolutely no idea what it was about. I guess I can chalk it up to bad television or cinema. Heck, I still know every word to every Beatles’ song. Isn’t that what’s really important??
You have difficulty concentrating on a single task
I have no excuse for this except that I’ve never done it before. I’ve always watched TV, surfed the Web and knitted at the same time. Concentrating on one thing is soooo inefficient.
Now, don’t get me wrong. I don’t mean to make fun of any of these symptoms, but like everything, it does help to be able to laugh about it. Of course, I pray this stuff is all temporary and I know there are things I can do to help myself, like always carrying a notepad, getting plenty of sleep, meditating and exercise. That last one seems to be the cure to almost everything. Or, you can go to the store and buy a pint of “chemo-brain” – it contains swirling thoughts, makes you nuts and could cause sphenopalatine ganglioneuralgia*.
OMG that’s funny stuff – terrific. I’m tempted to do what everybody does when one is ill or going through something and complaining about mental symptoms – they all say, “Oh, that happens to me all the time.” Which while sounding empathetic, sometimes discounts what I’m actually going through. If I felt like this was NORMAL, I wouldn’t need to talk about it – so let me talk about it!
So… I’m glad you’re talking about. I will say that, of all the people I know who are capable of experiencing cognitive dysfunction, yours could certainly be one of the more entertaining rides to accompany – hence, “fire-ling,” which is the only way I plan to name an iron from now on. By the way, at no point in my life have I ever called it a “flat iron” – the only thing I’ve ever called that is the triangular building on 23rd and Madison.
Here’s one thing you can do for this rest of us: CONTINUE TO WRITE THIS STUFF DOWN.
(and, continue to heal up and get better).
Yours in wounded solidarity,
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defineately suffered from this and after 8 years since my last chemo and I think it is gone it is back
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Jodi, Skip showed me your post and I understand so well what you are writing about. I had a lot of the same experiences when going through chemo. It will get better! Hang in there. Love all your blogs. Be well.
Ingrid
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Thanks so much for the support. It makes all the difference.
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Hi Jodi. I found this particular post on Facebook. A friend here in Albuquerque just got her Ph.D. in psych and is raising funds to develop therapies for chemobrain people, although I prefer to refer to us as chemobrainiacs. She is focusing on breast cancer patients. I am sad that I can’t be part of her testing as I am way too far out. Right now they have looked at people only about 10 years out of chemo and I am about to hit year 16 at the end of Aug. I was 45 when I found my really big lump and finished chemo about 2 months after I turned 46. So 1999, and I was in northern AZ where I didn’t know very many people. I am here to say that chemobrain can persist and often does in some form or another, probably for the rest of our lives. I had 4 infusions of CAF and 4 of taxol, which they were just trying on breast cancer patients at the time. Yes, the CAF immediately completely befouled my taste and smell, but I lost weight, so there was an upside, and ice cream was one thing that didn’t bother me. So other upside. I cruised on Taxol, unlike all my other friends. But with this new research finally into chemobrain, which I’ve been following since the first announcement of a completed study in Nov. 2012 on NBC Nightly News, I’ve learned some stuff. About 9 years ago, after finishing up on the horrid tamoxifin, I asked my oncologist when my energy would finally be coming back. He gave his evil little laugh and said, “Never.” Recently I found that the chronic lack of energy is now classified as part of the chemobrain complex. Plus, I am now over 60 so that just adds to it. But I am chronically exhausted and it makes it hard for me to work. I am trying to finish off my comeback line of hand made hand painted clothing after a successful run from 1989 to 1997 (before the internet really), and it’s been hard. I can do maybe 2 days full out of either designing the clothing and making muslins, or drawing the artwork which will go on said clothing. I get up ready to go on day 3 and the exhaustion slams me. This time I’m 3 days into it, but still hoping to get some designing done today anyway. And here’s something else that’s a heads up unfortunately, my lack of concentration has not come back much at all, and again, because I do creative work, this is a massive problem and also slows me down. Living on a very tight budget, I have a year and a half before I will be homeless, and apparently I do not qualify, nor apparently do any of us, for disability and years of working for me, let’s just say early or normal age social security is not a good option. So that’s the sob story part. I also should add, I’ve tried working jobs with flex schedules, like retail, and that not merely really messes my brain up, but actually, every single time, has made me physically ill. Now, on the upside. After getting a BA and MA (both completely worthless for getting hired for anything, not to mention rampant age discrimination), when I worked on my Ph.D in the early ’80s (no, I did not finish my dissertation), in history, we were all trained to research all information pertaining to our subject for papers and be prepared to change our thesis if need be. So, I was trained, within narrow parameters, to ingest a variety of info and see a bigger picture within that. Since the chemo, again, the upside of my chemobrain is now my brain takes in pretty much everything and then spits out tons of big picture concepts that my friends just say, “How did you know that?” as a few days later, the experts have noted the same big pictures. It also churns out other ideas for things I could do to start more of my own little businesses, not necessarily in arts and crafts and design. I’ve finally started keeping a record of those because it got kind of constant. But for me those two aspects are the upside of my chemobrain, making me a proud chemobrainiac. The biggest downside, my closest friend here in New Mexico went behind my back in 2012, right before the first confirming study came out (2 weeks before), called another friend whose husband is a psychologist and told her I was profoundly mentally ill and have been all my adult life (she has not known me all my adult life) and wanted the name of lawyer who could get me disability. Then she informed me about all that. The lawyer did say I didn’t qualify. Then a couple of hours later at my house unannounced and screamed all of that in my face, bringing up an adult lifetime of nothing but poor choices. Well, that’s not true. Sure I’ve made a ton of mistakes in my life, though nothing criminal, mostly involving choices in men and dealing with money. But she doesn’t know the whole story of that latter at all. But I was very successful, and happy, with that first long ago clothing line. But it has got to the point where we barely speak. We live less than a half mile from each other and she has only contacted me by email since December. For my birthday a couple of weeks ago, a mere email for that. Usually we go to lunch. So, sadly, I can no longer consider her a friend, someone to rely on, etc. So that’s been my big downside. And I do wish we could be evaluated for disability. That would be a huge relief for me. Not to mention the ACA because I finally had insurance under Medicaid expansion. I was uninsured when I went through cancer treatment and let’s just say within the first few years I got some stunning miracles helping me out greatly on those bills. OK, so this has been long. But just know, I believe, based on my own life and experience, that some of the changes called chemobrain, due to the chemo, are permanent. And all we really have right now is crude work arounds that don’t work all that well that we make within our own lives. But to those around us, as the years pass, they don’t see it and don’t believe that stuff is still going on. I’m hoping the therapies my friend Jen wants to devise will help. I just wish she’d let me be part of her development work. Thank you for what you are writing. I will be following you from now on. Live long. P.S. If anyone like my feckless boyfriend at the time says to you, “Well, this is the worst thing that will ever happen to you in your life”, just kill them because I’ve found that is not at all true.
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thanks for sharing your story. keep the faith.
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This is all familiar. I had chemotherapy throughout 2009 for Hodgkin Lymphoma. 11 months later I was back at work. Although I went back too early – I found that it really helped me feel good about myself and I thought I was getting better. Then a few years after that WHAM! Back to chemo-brain again. According to one American Brain doctor on YouTube “Chemo Brain and Recovery” – a series of 15, the brain’s DNA acts on auto-pilot for up to 4 years then stops. But by doing physical and mental exercises it can recover. I had to re-learn my times table and am better at math now than I was before I had cancer. However I still have lots of short-term memory loss – I had to give up my job – I was driving people mad asking the same questions continually and had lost any multi-task ability – could not concentrate.
I have many funny stories too. My family think I am hilarious – but that is not for your blog. Love your stories, they make me feel normal. Thank you
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