As I’m stumbling through a bad cold, I got a reminder that you can find good stuff in bad situations.
Let me see if I can string this together somewhat coherently…
The cold I have came with an eye infection (relax, not posting pics!) that makes me light-sensitive enough that I need to be chauffeured around. Went to the doc last week, got a prescription for eye drops, then swung by to do some shopping, which I needed to wear sunglasses for.
And as I’m picking my way through a busy Costco, I’m holding onto a phone that I just bought–has a case but no screen protector yet–and I’m really worried that I’m going to drop it or lose it if I get distracted.
And why do I get distracted? Because anxiety and a touch of chemo brain (aka Cancer-Related Cognitive Impairment (CRCI)) have a summative effect that makes me loopy. Not a “scare-your-children” kind of loopy, but a constant “what-was-I-just-doing” kind of loopy. Over and over and over again.
I’ve been dealing with this over the past couple of months while juggling stressors. My eye infection introduced a new wrinkle–I am very much a visual person and use visual cues to manage the anxiety/CRCI problem.
But the good news? The Memory and Attention Adaptation Training (MAAT) classes I took for managing CRCI focused on mindfulness as a way of dealing with the lapses in memory.
And when I was in a Costco bathroom stall, I realized that I was acutely aware of where all my things were–purse on the door hook, phone on top of the toilet paper dispenser. I was ALL THERE and 100% present. I couldn’t afford not to be.
Not an earth-shaking revelation, but it was another reminder that there are all sorts ways to ground ourselves in the present. If I hadn’t taken the MAAT class I don’t think I would have felt so confident that what I was doing (being mindful) would work so well to help me stay focused and aware.
So, yes, I can be grateful for chemo brain for that.
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Today my vision has improved to the point where I can tell that the kitchen floor is really dirty, and that is most unfortunate indeed.
With all the focus on breast cancer during October, pushing us to be warriors and fight our way through this, the concept of survivorship can get lost in the fray.
We talk about cancer treatment and get very granular about the procedures, whether surgery, chemotherapy or radiation therapy. And those do deserve a lot of discussion as they can be difficult to endure. Some, like chemo, have an almost legendary reputation and it’s important to be able to separate fact from fiction.
After all the noise and attention associated with cancer treatment, survivorship can leave some of us feeling alone. Photo by Atharva Tulsi on Unsplash
Consider: how many of us, upon hearing that we have breast cancer, preoccupy ourselves with worrying about what life will be like five years down the road? More likely, we’re thinking about what treatment will be like and are hoping that we’ll be around when it’s done!
But with so many women surviving breast cancer, it’s important to talk about what happens after the dust settles and you realize you’re on the other side of the treatment that you had so feared. Is it really the “other” side?
So much of my blog has been devoted to the life after cancer. After I documented my treatment journey, I turned around to get hit in the face with all the stuff that I wasn’t expecting.
One of those was endocrine therapy. Women with hormone receptor positive cancers aren’t done when the “tough stuff” is over. Tamoxifen and aromatase inhibitors are a whole new round of treatment that can affect your hair, your libido, your joints and more. Some women get hot flashes and night sweats. Some experience weight gain. And these are medications intended to be taken for a number of years.
There may be body image issues. Breast cancer surgery can leave women looking very different from their pre-cancer days. Like it or not, breasts are associated with womanhood. Whether lumpectomy or mastectomy, with or without reconstruction, there is a new normal that needs to be dealt with.
By seeking support and relating your story, you help not only others who are dealing with something similar in addition to yourself. Photo by Ivana Cajina on Unsplash
And then cognitive issues like distractibility, loss of memory and difficulty processing concepts may come up. To make things more complicated, these may appear after treatment is in our rear view mirror and our loved ones may simply not appreciate what we’re dealing with. The bodies and minds of survivors may change in a way that they are not prepared for. Because, how do you anticipate something like this?
Survivorship does not mean that you never again have to think about cancer or its repercussions. There will be adjustments to your expectations as to how your life will be from now on. It’s important that those around you understand that just because you are done with the major cancer treatments, things might not feel familiar or normal.
So we need to be having this conversation with those around us and making opportunities for affected women to seek help and support. There is no shame in being a survivor who is also struggling. While it’s true that we are “lucky to be alive”, it does not mean that we have no right to seek a higher quality of life.
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! ❤
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?
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.
Frantic Shanti 