A Mini-Guide to Surviving Chemo Brain; or, “Wait, what were we talking about?”

While it’s not my intention to write advice columns for breast cancer patients, because I posted ‘getting through chemo‘ tips, I might as well follow up with what I’ve learned about handling the memory and focus issues associated with chemo brain.

Note, first, that chemo brain may not be all chemo. There may be various factors involved (chemo, tamoxifen, onset of menopause, even the tumor itself) and it’s difficult to tease out which one is the main culprit. Be that as it may, it still sucks when you’re standing in your closet, wondering why you went in there…for the tenth time today.

I put a lot of blame for this lack of focus and fleeting short-term memory on the estrogen-blocking drug tamoxifen, which is given to women with hormone receptor positive tumors. I can’t tell you how many physicians have assured me that it’s a “great drug” for decreasing risk of tumor recurrence. And an equally large number of women who have told me that their lives improved after they got off it.

Regardless, for now chemo brain is a fact of my life, so in the spirit of accepting what I cannot change, here are my best practices for making sure that chemo brain doesn’t get me fired from my job:

At least I know it’s there…
  • Write down your thoughts. And do it immediately. I’ve actually lost thoughts as I was scrounging for a writing utensil. If I have to remember something, I put it in writing, often on a sticky-note that goes on my computer monitor or bathroom mirror. Some place that I look at multiple times a day. I do this to excess, with notes everywhere, but it works. It also decreases my stress levels because I know the thought has been recorded.
  • If you can’t write it down, repetez! Repeat it in your head. Sounds obvious and overly simplistic? Perhaps, but you only need to do this until you either no longer need the thought, or get to a place where you can jot down a note. Of course, I ruined the last part of a meditation retreat for myself because a load of great post topics popped into my head and I had no place to record them. On the bright side, I realized I could juggle seven items in my head for a half hour if I concentrated on them!
  • Narrate what you’re doing. I’ve had to resort to this, especially when working on a multi-step process where accuracy counts. Yes, I’ve made mistakes on the “I-must-be-smoking-crack” scale, and this is often one of the best ways to avoid that. When I hear myself say what I’m supposed to be doing, I stay on task and am less likely to wander off.
  • Avoid distractions. This is probably the most critical piece of advice I can offer. Distractions are death to my thoughts because I go down rabbit holes before I’m even aware of what happened. The Google page of my Firefox browser at work suggests articles to read based on my browsing history, and let me tell ya, there are few feelings worse than suddenly realizing that you are lost deep in an article on body language when you should have been finishing up a report that’s due in a hour. How’d that happen? Anything that breaks my concentration — even a tickle of a distraction — can sidetrack me for minutes before I come to my senses.

Bottom line is, stay present. If there were one general rule of thumb to preserve your functioning while in the grips of chemo brain, that would be it.

The above hints may seem obvious, but I went through a lot of frustration until I accepted that my brain had changed and it couldn’t be ‘business as usual’ anymore. Once I started working around my limitations, things got a lot easier.

Invisible Effects: Body Image, Part 2

Oddly enough, one of the things that scared me about cancer was that it threatened all the work I’d put into my body. Being a bit under six feet tall since my teenage years, I was called “big” a lot whether or not I was overweight. At 16, I went through a phase of disordered eating. That passed, but I retained a sensitivity to how I was perceived by others. Always, I was fearful of being judged, and that pushed me towards perfectionism.

Fast-forward to 2017 and my diagnosis. When I started researching breast cancer, one thing that struck me was that the information I found didn’t mesh with my conception of what cancer was, in terms of what the treatment did to the patient. I had always thought of cancer treatment as having a wasting effect on the sufferer. But then I read of the propensity that many breast cancer patients had for putting on excess weight, not only throughout chemo, but also due to taking estradiol-blocking medications like Tamoxifen.

Wait, what? Gaining weight? But I’d always thought that cancer patients lost weight! Sure enough, google “breast cancer weight gain” and you get a lot of entries from reputable sources that warn about this tendency to pack on weight. My Nurse Navigator echoed that point, noting that many women “put on 10-15 pounds.”

Many decisions in my life have been motivated by a fear of being judged.

This provoked a lot of frustration. I had established excellent diet and fitness habits for the very purpose of building strength and endurance and avoiding the weight gain that accompanies advancing age. I had kept emotion out of my food choices (kudos to my mother for being careful about not connecting food and emotion). During my time as a stay-at-home-mom, I’d obtained a highly-respected personal trainer certification because I wanted to be sure I knew what I was talking about. My standards were high, but even if I couldn’t attain my version of “perfection”, I put in 100% effort and that made me feel good.

And then, cancer. Despite doing everything I could think of to maintain peak health, I still had not been able to prevent the development of my tumor. That was extremely unsettling. But for me, having my whole body shape change as a result of this was almost worse.

Predictions of the future raced through my mind: I was going to lose my lean mass, lose my fitness and put on ten or more pounds. I would be judged for “letting myself go”. None of this would be under my control. Just like the cancer, it was all happening to me, and as far as I was concerned it was bound to ruin my life, whether or not it actually killed me.

However, as with so many other things related to my cancer, this didn’t go the way statistics predicted. And that’s why there’s a Part 3 to this body image series…

A Year With Tamoxifen

One of the most distressing parts of going through cancer treatment was that I thought it would “ruin everything”, even if it saved my life. Physically, I was really enjoying my 50s and hadn’t noticed much of a drop in endurance and strength, and certainly wasn’t experiencing menopausal symptoms. But with my diagnosis came the news that, because I had an estrogen receptor positive tumor, I’d need to be taking estrogen-blocking Tamoxifen (or an aromatase inhibitor) for a decade.

A decade is a long time! Chemo was only six courses over about four months and radiation lasted only six weeks — all time-limited and psychologically doable. But Tamoxifen would be with me for ten years, and presumably, so would the troublesome side effects, according to just about every woman who was taking it. They spoke about how difficult it was to stick to the daily regimen, knowing that it was responsible for horrible hot flashes and night sweats — one woman even said that she couldn’t exercise due to the severity of her symptoms.

Not exercise?!?! My version of hell: a sedentary existence.

At this point, I was busy dying a thousand deaths. I started to question whether death by cancer was a preferable alternative to a decade of misery. Mind you, I hadn’t even begun taking Tamoxifen yet; all of this was fear-driven. I feared having no control over my own existence and the things that really mattered to me. Basically, this was an end to life as I knew it.

So, fast forward to today. I have been on Tamoxifen for a year. I’m still waiting for the misery. Please note, I do not, for a second, doubt that women struggle with Tamoxifen’s side effects and I have the utmost sympathy for them. I also realize that I’ve been very fortunate so far to not have those types of symptoms. Sometimes I feel a little warm and have to roll up my sleeves or take off a sweater. Being in stuffy rooms can feel uncomfortable. But these don’t constitute what has been described to me as a hot flash, and I cannot recall whether I had those same sensations prior to treatment. Before my diagnosis, I’d had some sweaty nights from stress; I haven’t had a single night like that since starting Tamoxifen.

I do have some memory issues, particularly distractibility and loss of focus. Sticking to one thing at a time is an absolute necessity or else I’ll get sidetracked. My libido took a hit too. But is that Tamoxifen, effects of chemo…or just the onset of menopause?

The bottom line is, I had beaten myself up over potential effects of a medication way before I’d experienced it. I’d ignored the number one rule of cancer: everyone’s experience is different. Oddly enough, that had been the mantra I repeated to everyone else, but I’m the one who needed the reminder. For me, Tamoxifen has not turned out to be the torture that I’d expected.

If there’s a take-home message from this, it’s that cancer is a complex disease and its treatment is equally complex. Just as there is personalized medicine, there are individual reactions to that medicine. I, for one, have convinced myself that I need to stay off the Internet, take a deep breath and have my own experience.