Memory and Attention Adaptation Training (MAAT): Finding a Way to Deal with Chemo Brain

So, as I’ve written about in previous posts (here and here) there’s this thing called ‘chemo brain’, and contrary to what you might find when you google it, it doesn’t necessarily go away after you finish cancer treatment. It also has a longer name: Cancer-Related Cognitive Impairment (CRCI).

This can be particularly frustrating for those of us who are expected to perform “as before” (meaning, prior to getting cancer) and yet increasingly fall victim to distractions, searching for words, forgetting things as soon as we’re told them, and in general, wondering whether we’ve now come down with a mix of dementia and ADHD.

You’ll need more than a bouquet of forget-me-nots to navigate post-cancer issues like CRCI. Classes like MAAT can help.

There is help, however, and it’s arrived in the form of a class called Memory and Attention Adaptation Training (MAAT). I had the opportunity to take this 8-week class in Fall 2022 and it recently concluded.

The class is intelligently put together, first showing students the science about what they are experiencing (and that it’s not early-onset dementia!), and then over the next two months, teaching tricks and techniques for helping navigate the new landscape of CRCI.

This includes learning stress management techniques, improving sleep and pacing oneself, making self-care a high priority. But the majority of the class was devoted to learning how to use methods such as rehearsal/repetition, situational awareness, scheduling, distraction reduction, active listening and imagery. These help us maintain focus and retain information while reducing overwhelm.

It takes more than littering your desk with post-it notes. We need to create an environment that supports memory storage and distraction reduction.

I took the class through SHARP Hospital in the San Diego, CA area as part of their second cohort. It was taught by a clinical oncology social worker (herself a breast cancer survivor) and a speech pathologist, and their expertise made the class even more worthwhile. While the first cohort was in person, we in the second cohort had the benefit of taking the class via Zoom, which helped with accessibility, especially for those of us who are still working.

And a number of us there were already about 3-5 years out of treatment, which dispells the notion that chemo brain only lasts during treatment. Our cohort members’ ages ran the gamut from early 30s to well into retirement, illustrating that CRCI can show up in any cancer survivors regardless of age.

Realizing that this is affecting many more people that have been reporting symptoms, the SHARP Health Care system has opened the classes to individuals in other health systems in the San Diego area.

No matter where you live, if you are a cancer survivor experiencing some form of cognitive impairment, I urge you to 1) tell your oncological team (They need to know this is happening!) and 2) ask them about the availability of MAAT classes in your region. MAAT is not currently being offered widely, so please make your needs known so that this service can be expanded to those who need it.

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Curiously enough, one of the first assignments we had in the MAAT class was to work with gratitude – yes, it really does help! Such a perfect practice to begin at this time of the year! Happy Holidays to all! ❤

“Scatterbrained”: Yeah, Chemo Brain is Real

After a few years of wondering what the heck is going on with my head, I joined a Memory and Attention Adaptation Training (MAAT) class generously provided by my cancer center (which I’ll be posting about on a later date).

This is gratifying on two levels: first, that I can learn new strategies for dealing with the memory issues and distractibility that have been plaguing me since finishing breast cancer treatment five years ago; and second, and perhaps more important to me emotionally, that what I am experiencing is REAL. It’s officially termed Chemotherapy Related Cognitive Impairment (CRCI) or, informally, chemo brain.

I’ve been told that “you’re imagining this” (I’m not) or “you’ve always been like this” (I haven’t) or “just focus harder” (I AM!!!) or even “this is just an excuse” (Argh! No!), coming from people who have been annoyed by my memory lapses.

Chemo brain spends a lot of time just wandering around without an idea of how to get anywhere.

My brain isn’t lazy. As a matter of fact, it’s the opposite problem. My brain is too busy.

In the MAAT class, we learned of a study from the University of British Columbia (UBC) by Kam et al. (2016, Clin Neurophysiol) that examined what happens inside those brains that suffer cognitive impairment from cancer treatment, even years later. In that published study, the experimental group consisted of nineteen breast cancer survivors. All had undergone chemotherapy for early stage breast cancer and had subsequently self-reported cognitive issues.

Researchers at UBC compared these survivors against twelve (non-cancer) control subjects in a task that required sustained attention. All the participants’ brains were monitored via electroencephalogram (EEG) both while working on the task and while at rest.

The results were vindicating for me and, I’m sure, for others experiencing this. Normal brains cycle through periods of focus and periods of “wandering”. However, as the UBC researchers stated in a summary of their results (published here): “We found that chemo brain is a chronically wandering brain, they’re essentially stuck in a shut out mode.”

This was true even when the breast cancer survivors thought that they were focusing. Furthermore, the survivors’ brains exhibited activity even when they were instructed to relax.

Great. We know that chemo brain is an undeniable fact for some cancer survivors and can last for years — in this study, up to three years. However, for me and some of the people in my MAAT class, it’s been five years and we’re still dealing with this, which is frustrating. What can be done about it?

When anxiety and chemo brain collide, you get a confused goat tangled up in a rope. That would be me.

It won’t come as a surprise — anxiety makes everything worse, and that holds true for chemo brain too. As mentioned above, I’ll discuss this in greater detail in a later post, but basically, a main focus of the MAAT class is learning to handle stressors in an effort to relieve anxiety.

So now that I know that what I’m experiencing is a real thing, a large part of combatting it is what I’m already trying to do — mindfulness, meditation, yoga and similar sensible self-care. And while it might seem aggravating that even with all that practice I’m still dealing with this, I’m actually bouyed by the fact that every bit of mindfulness helps. The reality is, I’ve made a monumental amount of progress from where I was when I started, five years ago.

And that keeps me going. Where would I be if I wasn’t trying?

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References:

Reader-friendly summary:
“‘Chemo brain’ is real, say UBC researchers”, UBC News, Apr 27, 2015, https://news.ubc.ca/2015/04/27/chemo-brain-is-real-say-ubc-researchers/

The published study:
Kam JWY, Brenner CA, Handy TC, Boyd LA, Liu-Ambrose T, Lim HJ, Hayden S, Campbell KL (2016) Sustained attention abnormalities in breast cancer survivors with cognitive deficits post chemotherapy: An electrophysiological study, Clinical Neurophysiology, 127, 369-378. https://doi.org/10.1016/j.clinph.2015.03.007
Please note that the above study is not available free online at this time. For a pdf free of charge, contact one of the authors (email address next to their name at link above) or your local university library. Due to copyright issues, I am unable to distribute the full document myself.

Calming the Mind by Counting to 10 – with a Focus Twist

I’ve posted several times about different counting techniques that I’ve used to help calm and ground myself (counting backwards, counting 100 breaths). It sounds like such a simple thing, but it is surprisingly effective.

Counting is one of those things that we naturally learn when we are very young, and because it’s so familiar to us, we can do it with ease as adults.

Job #1 is to stop the swirling thoughts so that you can drop back to sleep.

This ease comes in handy when our Monkey Mind is jumping around like mad, stewing over what has happened or fearing for what is to come. Counting gives it something to do so that its attention is drawn away from anxious thoughts.

In particular, I’ve found this to be useful at night when falling back to sleep has been hindered by that incessant buzz of thinking that won’t go away.

The technique that I’ve used over the last few weeks weaves a counting pattern like this:

Become aware of your body lying in bed. Try to soften the most obvious places of tension (for me, neck and shoulders) and turn your attention to your breath.

Begin by focusing on your inhales of your breaths and counting them, up to ten. Then, switch your focus to your exhales, counting each one up to ten. And again, switch back to focusing on the inhales, continuing this way

The combination of counting up to ten and focusing on either the inhales or exhales provides enough of a distraction from your thoughts, but requires some gentle attention to keep on track. The switching of focus invites your mind to return to the breath.

Counting sheep might work just fine, but counting breaths helps you stay present and grounded.

I’ve found ten to be a very good number; however, five would also work. Whatever you prefer. This might require experimentation to see what is best for you. For example, counting to two might work better for some people during waking hours when there is naturally more stimulation around.

As you establish a pattern with your breath, extend your exhales regardless of where your focus is. This helps slow both your breath and heartrate.

Again, this technique works because counting to ten is simple and unstimulating, allowing the mind to lull itself into a calmer state. When I find myself missing ten and instead counting into the teens without switching my inhale-exhale focus, I know that I’m beginning to drift off. I gently stay with it, but sleep is nearby.

Holding Space: When the Thing to Say is Nothing

On the first day of my Yoga Teacher Training program, we did a curious exercise. Students were instucted to pair up and take turns speaking for about 15 minutes. During that time the speaker was to tell the other about their life. In turn, the listener was to say nothing. In fact, they were to make no facial expressions or give any response to the speaker. They were there simply to be present and witness to what the speaker was saying.

This was incredibly difficult for me to do. My partner was an amazing woman with a backstory that I was so driven to respond to. My usual MO in situations like this is to make little noises like “oh!” and “uh-huh”, and to nod along, raising my eyebrows, smiling…all actions to encourage the speaker. Containing that urge made me feel like I was sending a message to her that I didn’t care. I didn’t want her to think that she was boring me.

Sometimes, the greatest give we can give is our presence and undivided attention.

But the idea behind this exercise made a lot of sense. Too often, we can derail the thoughts of others by interjecting comments. Even when we are encouraging the speaker, we may inadvertantly be sending them off in a different direction than they had planned to go. Additionally, I realized that my need to show that I was interested about what they were describing was actually moving the focus on myself, rather than allowing the other to speak their truth.

This spoke to my own insecurities. In particular when speaking with people in positions of power, I will often watch for body signals and verbal cues that inform me as to what direction I should take my story. I recognize that I lack self-confidence, lost over the years by interacting with people who, in fact, did not value me or my thoughts.

Afterwards, my new friend and I blurted out how much we had enjoyed the other’s story and how difficult it had been to not show appreciation. But we also understood the value of this exercise.

I would not be quite so stone-like with a speaker in a future situation, but I will definitely be more reserved with the interjected “wow”s and allow the speaker to wind their own way through their story, allowing them to fully express themselves, giving them them gift of holding space for what they want to say.