Another reflection on chemo brain

By | September 15, 2014

[Free Webinar Wednesday, Sept 17, 9am PDT, noon EDT on chemo brain – http://www.lbbc.org/Events/2014-09-17-Chemobrain]

A great blog post by Anne Boyer crossed my twitter stream today. In it she talks about her experience with chemo brain after her first cycle of AC chemo. I encourage you to read her post before continuing with this one, as she does such a great job describing how chemo brain manifests itself in her.

I was lucky. I didn’t have clear indicators of chemo brain during AC chemo – at least not until the last dose, at which time the mouth sores made everything else irrelevant! What I did have was an inability to multi-task or concentrate (if Scott played any music, I became unable to type, write, or think). My inability to multi-task began before the chemo – as I had a hard time concentrating immediately after diagnosis (for that I blame stress and anxiety). However, I noticed during AC chemo that driving took a lot more energy. I could still do it, but to pay attention to so many things at once was exhausting. As the chemo progressed, I found myself thankful for the disabled permit that allows me to use a close parking spot at the grocery store. The cognitive effort associated with finding a parking spot would have made running errands impossible. I may not physically need it from a strength perspective, but I definitely physically need it from a cognitive perspective.

But as I ventured into the T-chemo regime, the cognitive numbness became more pronounced (actually my cognitive abilities are sharper for the first two days and they then decline rather rapidly). I tried to blog about it, which in hindsight is rather remarkable. When I think about the experience and read about what I wrote, and then read Anne’s description of the effects of Adriamycin on the brain, I find myself wondering what are the effects of Paclitaxol on the brain? And what long-term effects of adriamycin wilI I discover (or not discover as I will have forgotten what I used to be able to do – a blessing I suppose). Anne writes:

MRIs of other women with breast cancer suggest damage to the visual cortex, “significantly reduced activation of the left middle dorsolateral prefrontal cortex and premotor cortex,” and “ significantly reduced left caudal lateral prefrontal cortex activation, increased perseverative errors, and reduced processing speed.”  Women complain that they lose the ability to read, to recall words, to speak fluently, to make decisions, and to remember.

One of the things that I didn’t mention in the cognitive numbness post is my difficulty in finding my words. I go to describe something and I’m not able to get the words out. I find myself pausing while I talk (or at least I feel like I’m pausing while I talk). The flow of my language isn’t the same – it has somehow been interrupted. This is one area where I hope that blogging is helping me. It gives me reason to practice using my words. With each blog post I am ‘exercising’ the parts of my brain that I use to analyze problems, and describe them. This mental exercise may prove to be just as valuable to my recovery as the physical exercise I do.

I cannot help but be offended that these side effects are not mentioned – or at least not talked about in any detail. There was a brief mention in our “Introduction to Chemotherapy” workshop that chemo brain was a potential side effect, and that it was a real thing, and that it was being studied – but that is it. I find it offensive that the side effect has been understudied because women’s description of the symptoms have been dismissed. But also, this side effect is especially scary for me – an academic. When I’m done this treatment, will I still be able to do the work that I do? I have a new found respect for my friend who started her PhD immediately after her cancer treatment. She negotiated PhD courses while under the fog of chemo brain while negotiating life in a new city. All I can say is Wow.

Another area that I haven’t been able to contemplate since chemo is reading academic articles. I don’t know what that barrier is. It may just be a mental block not related at all to chemo – is might just be that my body wants to take a break from academic work and it is exerting a resistance to reading academic articles. I want to be more knowledgable in certain areas, but I don’t seem to be as capable at search for the right articles, but I also don’t seem to be motivated to read articles. So, I fill my ‘high functioning cognitive days’ with busy work – I get some contract stuff done, I catch up on my emails, I write lots of blog posts – but I don’t read academic articles. I keep hoping that will change soon. I have a few starting to pile up in my ‘to read’ list … I just need the cognitive presents and also the motivation to make that leap – but it just isn’t there yet.

So for now, I shall keep up my ‘exercise’ and try to write regularly – either here or on my other blog. I can only hope that my words continue to make sense and continue to demonstrate some level of cognitive competence.

 

3 thoughts on “Another reflection on chemo brain

  1. Kate Bowles
    Having finished AC and Pacltaxel, I notice continuing impact in my ability to find words, but not in being able to reason. The ability to find words improves if I just slow down a bit. What’s more complicated for writing is being able to remember later the ideas that typically come to you while walking or doing something else. Before chemo I could rely on those ideas still being more or less around somewhere. Now I find that they entirely vanish, so that I can only remember having them, not anything at all about what they were. It’s a bit like trying to recall a vanished dream.

    The solution to this is notetaking, and I’m just not quite organised enough to do it yet.

    Likewise in relation to reading more complex things, whether they’re complex because they’re academic or for any other reason, I do notice increased difficulty remembering what came just before. So I read more slowly, in shorter sections, and with more backing up. I definitely notice impairment in transcribing.

    I think writing has probably helped. But as with so many side effects, you’re trying to figure out how capacities that were already declining came to decline differently, or faster. There’s no fixed frame to the measurement.

    Reply
    1. Becky Post author

      Kate, I had that problem BEFORE chemo. I use my Smartphone (iPhone), text-to-speech, and Evernote (blogged about a hack here which lets me use Siri to dictate a note which is a little different than text-to-speech, but works well while I bike – http://rjh.goingeast.ca/2013/11/07/using-siri-to-create-a-note-in-evernote/). When I exercise and an idea pops up, I quickly open an Evernote note, and use text-to-speech to dictate it (http://rjh.goingeast.ca/2012/09/25/using-siri-to-take-notes-on-my-iphone/). That way, when I get back to my computer, I can easily synchronize and the ideas are still there. I often find that I write complete sentences/ideas out when I walk or bike, so getting those solid thoughts down in writing as soon as possible is necessary – otherwise the thoughts are totally gone when I get back to my computer. But for me, I this was an issue BEFORE chemo and cancer – so it isn’t something that I would have thought was related.

      I think you make an important point that some of these effects may just be nature effects of aging, but that chemo and cancer diagnosis may speed up the onset of these effects – and so we are constantly need to learn adaptation techniques. But I’m glad to hear that adaptation techniques do exist. I do think my ability to think critically is largely still in there. I was always a slow reader – so perhaps the slowing down is making it that much more difficult.

      I’m actually finding that my ability to ‘search’ for things is hampered. I think that is because I’m not able to concentrate on things or that I’m easily distracted – so I’m not finding any depth in the searching.

      Reply
  2. Rebecca

    Coding notes: I find this to be a good post for a bunch of themes – identity negotiation as I talk about myself as an academic and the challenges I’m having. It also demonstrates chemo brain from my perspective. I had forgotten about the sense of pauses in my speech. Others say they didn’t notice it, but I did. I felt like I was stopping mid-sentence as I had a delay between what I was trying to say and actually forming the words. This is also a good example of the coping mechanism of writing.

    Reply

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