Cancer Survivor – Frantic Shanti

Again, the Mammogram

It feels like it wasn’t all that long ago that I had my five-year 3-D mammogram…and here I am with my six-year scan.

I’m writing this prior to the scan and will follow up with the results at the end of this post, but I find it useful to write while I am still experiencing the little uncertainties that come with scans. Like a Schroedinger’s-esque situation, I am both a cancer survivor and a cancer patient right now, since no matter how small a chance that another tumor will be found in my breast, survivor and patient are my only two possible modes of existence.

For this short period of time, I’m both survivor and patient.

For my own sake, I try to release all expectations at this time. I don’t want to relax and tell myself that I’m sure that the scan will be clear, because the drop down from that back into “cancer patient” state would be too fast and steep, so I breath deeply and anticipate nothing. But that’s hard to maintain.

At the same time, just a few weeks after seeing my oncologist who skillfully performed a clinical breast exam and found nothing, it’s very unlikely that a mammogram would bring up anything life-changing for me at this time. In fact, if anything were found, it would be a tumor in its nascent stages that would be much easier to treat than the one I had in 2017. Or so I tell myself.

To be frank, it’s not locating another tumor in the breast that constitutes the scariest scary outcome. No, it’s the not finding a tumor in some other part of the body — perhaps a lone sleeper cell that evaded chemotherapy’s effects and circulated through my body before grabbing onto a vital organ and silently beginning to grow.

That’s the real bad news…but it would not be the news I’d get today.

This brings me back to that situation that all cancer survivors face: accepting that there are no guarantees.

For the next hours before my mammogram I will focus on work, think of nothing to do with cancer and take deep conscious breaths. As I sit in the waiting room I will gently distract myself, submit to the squishing of the scan and hang in the stillness of the present moment until I get my response…and hopefully go on for another year. Maybe.

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So, I’m back now with the outcome that I was both hoping for and (to be honest) expected: All clear for one more year!

And even though I always play it cool before and during the scan, the difference in my state is really noticible after I get the thumbs-up sign. Those minutes of sitting and waiting for my results [note: as a cancer survivor, I get my answer on the spot, which I really appreciate] are a little uncomfortable — I float, trying to focus on my breathing. But to this day, even when I’m “not expecting bad news”, I cannot shake that tickle of unease.

And that’s just another part of being comfortable with being uncomfortable. Still working on it…

Finally Normal: My Six-Year Oncological Visit

I hit another cancer journey milestone this past week: my six-year oncology appointment.

Like my last few appointments, this one felt commonplace and unintimidating…and if the nurse had let me sit down for a couple of minutes after coming into the exam room, my blood pressure would have been lower. As it was, the reading was not that far from normal.

For the first time since cancer, my bloodwork is all normal!!!

One other thing that was strikingly normal: for the first time in six years, since all the cancer madness began, all my bloodwork, both Complete Blood Count (CBC) and Comprehensive Metabolic Profile (CMP), was completely normal. Nothing that would suggest a year’s worth of cancer treatment in the past.

This is so curious because for years, nothing felt normal.

Now everything is.

Ironically, it was my oncologist who was experiencing illness and I had to switch my appointment time so that he could get to his doctor.

I was hit by the realization that everything that had felt out-of-control and hopeless six years ago no longer existed. I was the one who had kept the idea of cancer alive in myself. I still defined myself as a cancer survivor because perhaps I needed some way to justify what I considered to be my shortcomings, as in, “I used to be able to do this, but…”.

This was a battle I fought in but only memories remain. In the present moment, there’s only silence.

Returning to the cancer center for this appointment felt like I was visiting a battlefield from a war that I had fought long ago. The echoes of battle cries…just the wind. The clashing weapons and falling bodies…not there anymore. This may sound like such an overly theatrical description, but that’s exactly what it seemed like.

This doesn’t mean that I’ve got the rest of my life figured out. There are still so many unknowns, including an increased chance of cancer recurrence — and I still need to schedule this year’s mammogram, something else that slipped my mind as I was basking in the idea of being “normal”.

But that tortured soul who, on top of all the other stressful things going on in her life, was hit with a cancer diagnosis…she doesn’t exist anymore. If I’m so unfortunate as to have the cancer come back, she won’t be experiencing the aftermath.

I will. And I feel like I’m so much better equipped to handle all that uncertainty than she ever was.

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I still call myself a cancer survivor. But it’s only one of a long list of “skills” that I have on my resume.

2023: Thriving at Last?

Some of our greatest strengths are born in our lowest moments.
Unknown

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”.

I have survived almost six years! But I had been so angry about my diagnosis that it took several years to appreciate how much of a victory that was.

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.

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.

Maybe Being Stinky Is Not So Bad?

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.

This is NOT what you think of when someone says, “sweaty armpit”!

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.

Our stinky sweat may offer some protection from stuff like MRSA, shown on this CDC photo. They might look like cute fuzzy purple balls, but in the age of antibiotic-resistant bacteria, they’re potential killers.

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.

Another Oncology Appointment…and What’s Up With That Smell?

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.

The Benefits of Physical Activity During Cancer Treatment and How to Begin

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).

Exercise, the Cancer Fighter. In the not too distant future, your oncologist might hand you an exercise prescription as part of your cancer treatment.

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.

Starting an exercise program? Make it something that you can do and enjoy, and it will become a life-long habit.

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.

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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.

Four Minutes of Hovering

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.

I will never again hear the word “lump” and NOT think of cancer.

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.

But still.

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.

For four minutes, I had no plans for anything outside of the room I was in.

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.

And Suddenly, Another Freakout

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.

Me: It’s probably nothing.
Also me: OMG I NEED TO CALL NOW!

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.

Kind of…

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To be fair, I didn’t totally freak out over this. But scanxiety over test results is getting a little old, honestly…