Some of our greatest strengths are born in our lowest moments.
While I try not to keep returning to stories about “how far I’ve come” since my breast cancer diagnosis almost six years ago, for the start of 2023, I wanted to do a teensy bit of navel-gazing and take stock of how different everything looks compared to how it did after my 2017 diagnosis…and even from just a year ago.
My breast cancer story started the same way as it does for most of those diagnosed with cancer, with a lot of shock and disbelief. There’s nothing new or special about that.
However, for me cancer had been my ultimate health fear, the worst thing that I could image happening, particularly because I grew up during a time that cancer patients had poor prognoses and I had lost dear family to the disease. My exercise, dietary and lifestyle habits were in part driven by health concerns and that’s why my eventual diagnosis felt all the more “unfair”.
The absolute worst health catastrophe that I feared could happen to me actually did happen…and I was too bitter to appreciate that I survived it.
Not only did I survive the treatment, I have slogged through lasting side effects. Trapped by fear and anger, I lost the initial positivity that I’d experienced right after completing chemo and radiation — I mean, after all that almost anything is going to feel better — and became mired in frustration.
When I finally managed to get through my head that there are many bad things that happen to people who do not deserve them, and many far worse than my own, I was able to move past my preoccupation with myself. That took longer than I’d like to admit.
But allowing that time to work through anger and fear until I got to the point of acceptance was so important for me. And the magical part of this is that acceptance was followed by an unfettering of my thoughts. Holding that bitterness had taken so much energy that little remained for other, more important things.
At the time of my diagnosis, I was fearful and bitter. A mere year ago, I was still angry. But in 2023, I have given myself the gift of freedom from that negativity and that allows so much space to breathe deeply and turn my attention towards better things. It was that release that took with it a nice chunk of anxiety that had likewise held me captive.
And now, instead of being just a survivor, I am finally feeling like I’m thriving.
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.
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.
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! ❤
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.
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?
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.
From what I can tell, the loss of body odor following cancer chemotherapy isn’t widely acknowledged within the medical community, but it’s certainly something that many of us have experienced.
Based on what I’ve read, this might be a result of the weedwhacking effect that chemo drugs have on our microbiomes. Regardless, the result has been positive for those of us who find that we don’t have to worry about being smelly.
However, I happened to catch an interview on National Public Radio (aka NPR) that helped make more sense of what was actually going on, even though it was a bit of a killjoy. Listen to it here, where you can also find a full write-up of the piece.
Basically, that sweaty stink that we find repugnant is from a compound produced by bacteria living on the skin. One species of these bacteria that’s associated with an onion-like odor is Staphylococcus hominis.
And unfortunately, these smelly microbes are very beneficial, helping protect humans from things like eczema and MRSA (antibiotic-resistant Staphylococcus aureus). As one of the researchers puts it, sweat is an “antibiotic juice” that forms a protective layer on our skin as it dries.
Yeah, I know what you’re thinking: cancer is miserable enough, and you HAD to take away this one little thing (loss of body odor) that was the only perk to chemo?
Well, as mentioned above, I’m not qualified to definitively say that it’s the chemo that kills the skin microbes and makes you not smell. I’ve been unable to find research studies that examine the effects of chemotherapy on your skin’s microscopic residents. Nonetheless, I’ve tried to contact the researchers mentioned in the NPR story to see if they’ve had any experience with chemotherapy and loss of body odor in cancer patients. If they reply, I’ll report back to you.
For now, if you’re happy being odorless, keep enjoying it.
My oncologist appointment last week marked five years since completing my final chemo infusion (and for those of you keeping track, since I had that nasty chemo nail infection).
Lately, my oncological appointments run like this: my onc asks how things are going, I air all my grievances and we spend the rest of the visit agreeing that there’s no way to determine whether what I’m experiencing is chemo-related, menopause-related, or something that I was dealing with before but hadn’t paid attention to back before cancer.
Because there’s nothing like cancer to make you acutely aware of every twinge and creak in your body.
But that’s about it. We are running out of things to talk about. In this context that’s a good thing.
I used to lament “what could have been” had I not gotten cancer, not experienced chemo, not been pushed into menopause chemically and artificially had my estrogen levels squashed. But now, I know better. What happened, happened. And “what could have been” is pointless to ponder because it simply isn’t reality.
It took me a while to get to that place and I’m finally okay with it .
But there was something else different about this oncology visit…
I walked into the cancer center for my appointment and was hit with “the smell”. There is a distinct scent in the building, possibly the cleaning solutions used to disinfect the place or maybe a fragrance that is purposefully pumped in. I had mentioned it to my clinical counselor several years ago and she admitted that a number of people have said the same thing. The smell is familiar, given that after multiple appointments and infusions and radiation sessions, I’ve experienced it a lot and have made many associations with it.
But for some reason, this time it hit me hard and a wave of sensations washed over me. Not sure why my reaction was so strong, but I’d like to think that between my last onc appointment and this one, I’ve made the most progress in distancing myself from the frustrations of getting cancer and have actually moved on with my life.
However, that rush of emotions served as a reminder of everything that I’ve been through over these past five years. I thought that chemo was going to be the hard part. Turns out, it was the most predictable part: six trying infusions, but they came with an end date. The rest of treatment brought uncertainty and unexpected difficulties. I thought I was done after radiation…but the pills continued.
Looking back at this, while I’m technically not “out of the woods” and may never be, these last six months have felt different. Yes, I still have another onc appointment half a year from now, but I’m finally turning my face forward to the future instead of constantly looking back at the past, worried that those frights will catch me again.
While this isn’t exclusively an exercise blog, if you’ve perused my posts you’ve probably noticed that I’m a huge proponent of exercise for both cancer patients and survivors (well, actually for everyone; but see my important message at the bottom of this post).
The best way to achieve this is to start exercising right now, if you are not yet, no matter what stage of the cancer experience you’re in.
There is a growing body of research that shows the benefits of exercise for cancer folk (I’ve written about it here). But the fact is that only about 17-37% of cancer survivors meet the minimum physical activity guidelines set out by the American Cancer Society (Hirschey et al., 2017, Cancer Nurs) even though doing so reduces the risk of cancer recurrence by 55%, not to mention the improvement in quality of life (Cannioto et al., 2021, J Natl Cancer Inst).
Now, there is a call to include exercise as an adjuvant therapy for cancer for those who are currently undergoing chemotherapy. During the Oncology session of the 7th International Congress of the Spanish Society of Precision Health (SESAP) that took place in Spring 2022, Adrián Castillo García, a researcher at the Barcelona Biomedical Research Institute (IIBB) of the Spanish National Research Council (CSIC), reviewed recent studies regarding the benefits of exercise during cancer treatment, including the potential role that it had in “modulating the tumor microenvironment and immune function.”
You can read a synopsis of his statements here in the section entitled “Exercise as Oncological Therapy” (starting towards the bottom of page 2). Castillo states that physical exercise “has been shown to have the ability to modulate the tumor environment… . This modulating effect translates into an improvement in the efficacy of chemotherapy and other oncological treatments.”
Castillo goes on to say that “prescribing doses of physical activity at an established intensity and volume can be very decisive in combating the tumor microenvironment, but this preliminary evidence must be confirmed in trials on humans to ratify the role of exercise as a treatment capable of improving the efficacy of the main therapies.” (All quotes from the aforementioned synopsis.)
With such promising results, it’s quite possible that future cancer treatments may be a combination of medicine and physical activity.
Ok, so say that you are not an avid exerciser, but motivated by these studies you’re willing to give regular exercise a go. What do you do when you’re already feeling fatigued from treatments?
I wrote about this here, but in a nutshell, the idea is that you need to decide what the right starting point is for you, and this will depend on your previous experiences, both physical and emotional, with a physical activity program. It will also depend on what you can manage at any given time in your treatment.
Ask yourself, “what is reasonable for me?” But don’t respond to that with a t-shirt slogan-type answer (“Exercise? I thought you said extra fries?!?”) that immediately shuts down the idea. Admittedly, there may be times during treatment that getting yourself to the toilet without help is a momumental achievement. But that will pass. And exercise will make you feel more in control of your health and better overall.
IMPORTANT: Find what you can do and then do it as consistently as you can.
This may mean starting very simply [always get your doctor’s okay first!]. Choose an activity, duration and frequency, say, brisk walking for 20 minutes a day, three days a week. Follow that pattern for two weeks, then add to it–perhaps another 10 minutes–not to overwhelm yourself, but simply to push the edge a bit (you can always ease off if you need to, give it a week and increase again). If possible, increase some aspect of your program every couple of weeks, as it suits your condition. In the example of walking, incorporate a flight of stairs and gradual upper body movements: first pumping the arms, then hand weights, eventually strength training for both upper and lower body.
The timing is up to you.
If a walking program feels too easy for you, train at a higher level, but remember that the same concepts still apply: (1) consistency, (2) progression, (3) balance in your activities. If you’re interested, read my post about my three “pillars” of fitness.
Most importantly, start, progress gradually and keep it up for the rest of your life.
If your starting point is a standstill, this will take patience. But I PROMISE you, no matter what you can muster, it will still be better than doing nothing.
I know I already said this, but it bears repeating, especially for cancer patients and survivors: do not start any exercise program without consulting with your medical team first. While I feel that improving your physical fitness is one of the best things you can do for yourself, every body is different and every cancer situation is different. Talk to your doctor and let them know what you’re planning to do.
Last week I had a 3-D mammogram. This scan marks a bit over five years since the diagnostic test that indicated I had a solid tumor on the outside of my left breast.
Heading into this appointment, I wasn’t particularly worried. Yes, I admit to having little heartbeat skips over “lumps” in my breast that aren’t really lumps: if you recall, I had felt something before my last oncologist visit; my doctor reassured me it was nothing.
And because last August I’d had a chest MRI, a more sensitive scan than even a 3-D mammogram, it was HIGHLY unlikely that there was anything to be found in this mammogram.
But still, after the pictures were taken and the mammography technician left the room to consult with the radiologist, I got that all-too-familiar uneasy feeling.
WHY? I knew that the radiologist wouldn’t find anything. The technician practically said that out loud, since she was aware of my recent MRI.
I sat alone in the mammography room, breathing, looking at the clock on the wall and simply hovering. My attention was like a butterfly looking for a place to alight. I wasn’t holding my breath…but mentally, I had put the rest of my life on hold when the tech stepped out the door.
It took all of four minutes and the mammographer returned and gave me two thumbs up.
I breathed a sigh even though I had expected the good news. And while I wasn’t “freaking out” waiting for the response, it became apparent to me that I might always feel uneasy during that period of uncertainty.
I didn’t want that. I wanted to be completely unaffected, as if I had never had a bad experience and my heart was calm.
But hovering it was, because there are no guarantees. And as the gears of my life started turning once again, I remembered that there was no going back. All the negatives that have happened have happened and I can’t change that.
Eventually, years from now, my emotions may soften, but in the meantime, I’m just going to have to be okay with hovering for a few minutes.
Last week, I had a Pap smear. If you’re not familiar with what that is, you must be either male or blissfully young. In brief, it’s a test for cervical cancer, customarily done every 3-5 years.
I knew my results would come this week, along with other lab results. I was in a work meeting today when I noticed my phone was vibrating. It was my doctor’s office…and I was too late to answer the call.
The doctor’s office didn’t leave a message.
And that’s when I officially tuned out the meeting. A flood of possibilities came rushing in. My boss needed to talk to me but I was trying to suppress the growing urge to call the doctor’s office immediately.
The urge won. I called and left a message and went back to work, but my head was elsewhere.
The fact that there had been no message was extremely unsettling, because it made sense that if there were really bad news, the office would want to speak with me directly instead of leaving a voicemail.
And my reaction shouldn’t come as a surprise, because having been hit with a cancer diagnosis before, I’ve become hypervigilant. Like it or not, my brain wants to prepare for the worst so that I don’t have that horrible fall from thinking that everything’s just peachy to slamming into a nightmare.
It doesn’t help that I’ve read sooo many stories of women talking about being completely blindsighted by frightening diagnoses, and all of them saying that they thought nothing of the missed call from the doctor since they knew they were perfectly healthy, blah blah blah.
Of course, I know better than this. And at least I was aware of the hypervigilance, aware of my body’s reactions and aware that I was blowing things out of proportion. But it’s that uncertainty that is so difficult to take. Even though I know my response, I know why it happens and I know that chances are everything is ok…I want that certainty.
As it turned out, the call had come from the nurse assistant to let me know that my blood work results had come in. This was a relief, although I admit I considered it a defeat that I couldn’t be mindful and breathe through it all.
Then again, as a cancer survivor, I need to cut myself some slack. Getting slammed with a devastating diagnosis once leads to understandable echoes, no matter what test results I’m waiting for.
For now, I’m calm. Of course, my actual Pap smear results aren’t in yet. Those should come tomorrow or the next day. The nurse assistant told me that they’ll probably be normal (OMG, how can anyone say that????) and they’ll be loaded onto the patient portal…unless they’re not normal. And then they won’t be.
Guess whose heart will be fluttering for the next few days?
Not mine, because I’ve got it together.
To be fair, I didn’t totally freak out over this. But scanxiety over test results is getting a little old, honestly…
So if you needed yet another reason to exercise before, during and after your breast cancer treatments, I’ve got one for you.
A recent study in the Journal of Clinical Oncology (Salerno et al., 2021) found that early stage (I-III) breast cancer patients who were meeting the US minimum physical activity guidelines both before and during their chemotherapy displayed better cognitive function then did those patients who did not, and the effects were apparent both at the time of chemo and also six months after its completion.
This follows along the lines of other things we already know about exercise and cancer, such as increased survival rates and reduced rates of recurrence. It’s not a big stretch to say that exercise (and for the purposes of this post, I’m referring to the US national guidelines) is possibly one of the best things you can do for yourself, whether you are already a cancer patient or don’t want to become one (again).
What are these guidelines?
It’s suggested that adults do (1) at least 150-300 minutes per week of moderate-intensity or 75-150 minutes per week of vigorous-intensity aerobic physical activity, or some combination of the two intensities, the more the better; and (2) strength training activity involving all the major muscle groups at least two days a week at moderate or greater intensity (see specifics at Physical Activity Guidelines for Americans, 2nd edition).
Notably, similar guidelines hold across age groups and health conditions, with some modifications, although what exactly constitutes moderate to high intensity for different people will vary according to their conditioning and abilities. Take home message: If you can’t meet the guidelines, do what you can. It will still benefit you. The worst thing you can do is nothing.
While there’s been a considerable amount of research done on the benefits of exercise as a whole, we’re only now beginning to focus on cancer patients and survivors as the test subjects. And new research is being conducted on different aspects of exercise to learn what effects they might have on cognition.
I’m going to be watching for the results of two clinical studies regarding exercise and cognition of cancer survivors. Both are currently recruiting participants.
If you have any interest in participating in either of these studies, contact info for the research project is available above in the posted clinical trial links.
So you might be thinking, “I can barely deal with the diagnosis…and you want me to EXERCISE???” I promise you, physical movement will only make you feel better. However, if you don’t have an established exercise routine and don’t particularly enjoy the experience, consider what you can manage.
We’re not talking about training for a marathon or a powerlifting competition. But if you can do something, ANYTHING, you will still see greater improvements in your cognition–and quite frankly, many other aspects of your physical and mental state–than if you hadn’t done any activity at all.
It is worth it and you are worth it. So lace up your shoes and give it a go.
I had an oncologist appointment last Thursday that marked four years of being done with chemo for breast cancer.
During my previous onc visit in February, I had been a mess: depressed, stressed and miserable with joint pain and a feeling that my endocrine therapy was taking away from me more than it was giving me. At that point, he let me stop the aromatase inhibitors.
Now, half a year later, I felt so different. My blood pressure was 118/83, much lower than the 130s and 140s systolic numbers I was hitting after stepping into the exam room on previous visits. I was peaceful and more hopeful.
We discussed all sorts of “survivor” things. The joint pain had mostly resolved itself and was no longer a hindrance to exercise, one of the things most important to me. My libido could have been higher and my short-term memory was often lacking, but he felt that could also be attributable to working and sleeping in the same room for the past year and a half, coupled with menopause.
Finally, my doctor noted that it was time for another chest MRI. Not the most comfortable of scans, but I’d done it once, I could do it again.
It was not until around noon of the next day that I suddenly plunged off a cliff. I was talking to my daughter and randomly mentioned my willingness to look after any pets she might have in the future when she’s living on her own, were she to travel for work, because where we lived now we weren’t allowed to have pets…
…and I was slammed by a massive wave of sadness and regret.
My thoughts zoomed back to my first chest MRI, stripped to the waist, lying on my belly, arms stretched over my head, frightened and painfully vulnerable. All my focus was on breast cancer and what other horrible realities the MRI would reveal. All I could think of was surviving my upcoming treatments.
That MRI meant that my life was on hold. There would be no progress in my career for the foreseeable future, and no chance of moving into a bigger place, one that would allow us to get a cat (note: I’m a dog person, but I would have been happy with a cat!). Animals have always been a part of my life, but our apartment rules prohibited them. I yearned for the chance to have a pet again. It seemed such a small thing to ask, but even that wasn’t available to us now.
That brief discussion with my daughter underscored a profound feeling of loss and despair. Cancer had robbed me of a lot of things in my life that others took for granted.
And as I sat there in the depths, I forgot that time does not stand still, things are always changing, nothing is permanent…and I have inside me everything I need to climb out.
Curiously enough, I had recently attended a talk on managing anxiety aimed at cancer patients and survivors. The counselor who presented the information was herself a breast cancer survivor and she told us a story of doing a follow-up chest MRI, which she found very stressful. Afterwards, she was asked by one of the cancer nurses what sorts of mental tools she had used while in the MRI tube to calm herself down. At that point, she realized that even though she taught these techniques to her patients on a daily basis, she had completely forgotten to use them herself!
I had been sitting in the darkness for a few minutes when I remembered her story. Most importantly, I remembered that I didn’t have to feel this way, that it served no practical purpose and that I wanted be happier. The only reason I felt like this was because these emotional plunges had been a habit of mine.
So I twisted a rope out of all those grounding techiques that I’ve posted about and pulled myself up.
True, I still didn’t have a cat. But I was able to take a deep breath and realize that at least I had a future. And that future might contain a cat.