Memory – Frantic Shanti

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.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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?

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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.

Is It Metastasis or Menopause?

Ever get the funny feeling that something’s wrong?

Like things are a bit “off” but you can’t be sure? I’ve been dealing with that ever since I got off letrozole, an endocrine therapy for breast cancer with a reputation for being difficult to take.

As of this posting, I’ve been off letrozole for 117 days exactly–yes, I’m counting. I’m still shaking off side effects like stupid-crazy joint stiffness, but at least I can tell things have improved.

That’s not what I’m talking about here.

*I’ve taken a few rides in the MRI tube already. Not in any hurry to repeat that.*

Right now I’m having some “really intense” memory and focus issues. I’ve put “really intense” in quotes, because I talk in superlatives so that my concerns are taken seriously. It’s a bad habit, especially when speaking to an oncologist, because it’s a sure way to end up in an MRI tube. Again.

In the past, my oncologist suggested that my memory problems might have been related to anxiety and not the medications I was on. That’s quite possible, although it’s hard to tease apart “anxiety” and “med side effects”. I mean, simply being told you have cancer causes an immediate spike of the Stress-O-Meter. For someone as anxiety-prone as me, it’s like I’m constantly red-lining.

Now I’m off the endocrine therapy and my memory and distractibility seem to have gotten even worse. What I had before wasn’t like THIS.

It’s kind of like saying, “This hurts. I think I’m being hit on the head with a hammer.” But then you actually get hit by a hammer, and think, “WHOA, now THIS is being hit on the head with a hammer!”

If thoughts are beads on a string, my beads are dropping off at a constant rate, leaving me wondering what I was about to do three seconds ago. And getting distracted by shiny objects. Couple that with having to learn a complex new financial system for work (grrrrr, Larry Ellison), not having helpful documentation to do so and having to go through that while being mainly confined to my bedroom for over a year…yeah, it’s a mess.

I am **not** being rational and I know it. But I’m still on high alert and dialing my fears down is going to take time.

Because my breast cancer was HER2+–which has been associated with metastases to the brain–my anxious little self immediately thinks, “Wait, maybe this is cancer’s spread stealing my thoughts???” I think that I will forever be jumping to that as the first possibility.

That’s not completely unreasonable, either. According to “Medical News Today”, memory problems are listed as one of the symptoms of brain metastases, along with headaches, stroke, seizures, confusion, dizziness…okay not really experiencing any of those.

And the Mayo Clinic metastasis website asks: what are the most likely causes of my symptoms? So, I admit, a brain tumor probably isn’t, given all the other more likely possibilities: menopause, work stress, loneliness, lack of purpose…and *cough* listening to Twitch video streams while I’m trying to focus.

So really, these memory issues could be a completely normal effect of menopause, but in the cancer context the possibilities are frightening. It takes a lot of perspective to be able to look at what’s going on and realize that it’s not aberrant or dangerous. I feel like an idiot for jumping to the worst conclusions, but here I am…

It’s a survivor thing.