Invisible Effects: Helplessness

Suffice it to say, simply having cancer can leave you feeling helpless. Ignorance of the cause, uncertainty about the future, fear of treatment effects — that lack of control is frightening. But that’s not the helplessness that I’m writing about here.

In my last post on chemo brain, I alluded to the disorientation that comes from distractedness, brought on by lasting effects of chemotherapy on brain function. Here, I want to drill down and describe the feelings of helplessness that arise. 

In WHY Did I Just Do That?, I wrote about a humorous dream in which I couldn’t understand the reasons for my weird behaviors. But the more sobering side of this is that I often feel that same way during my waking hours. There are things that I’ve done — treating a red light like a stop sign, as mentioned in my previous post — that make absolutely no sense to me and make me feel like I’m not in control of my own behaviors.

To make matters worse, I am not aware that I’m doing anything wrong (or dangerous or illegal!) at the time. When I realize what I’ve done, I’m horrified. Want to feel helpless? Not being able to trust yourself is a pretty good way.

I’ve been told that the main issue is loss of focus. Mindfulness helps immensely in these types of situations, but as anyone who has practiced mindfulness can tell you, you can’t be mindful 100% of the time. In my case, I’m fearful that this distractedness can put others or myself at risk.

This.

Want a few more examples? Some are rather benign, like almost flooding the bathroom because I left the water running in the sink. Or writing an important email and leaving it unsent. Most of us have done something like that at one time or another, likely due to juggling too many tasks at once.

But the things that leave me feeling desperate are the ones that are not easily remedied. Having to learn things over and over again because I’m not retaining information. Having trouble expressing myself and not being able to retrieve words. After working as an editor at one point, this is unbelievably disheartening.

However, one event topped them all: I fell for a (well-designed, admittedly) bank scam where I gave out my Social Security Number despite having taken my work’s cybersecurity training course the previous week, and having received constant reminders from my bank that they will never ask for my SSN over the phone. Besides making me feel unimaginably STUPID, it cost me a good deal of money, time and nerves. 

“Helpless” is not even the best word to describe how I feel. “Hopeless” is a more apt term. “Exposed” and “vulnerable” work too. This begs the question: how much more damage will I do to myself before things start improving? I should be working full-time instead of part-time, given the cost of living in my area. But how can I even think of looking for another job when I’m on such shaky ground? Cancer knocked me down in ways that I never anticipated. Yes, I’m grateful for being alive, but YEESH!

Building new neuronal connections, identifying what aspects of my memory issues are most severe, practicing mindfulness as much as humanly possible — it will take all that, along with a healthy dose of patience, to start seeing improvement. Hope I don’t get distracted and drive off a cliff before then.

Invisible Effects: Chemo Brain

Ah, chemo brain: the eater of thoughts. I should note that what I’m experiencing might not just be the effects of chemotherapy messing with my brain cells. This could also be influenced by the estradiol-blocking drug Tamoxifen that is forcing me into menopause before my natural time, or it could simply be the menopause “fog” that women complain about. So I don’t know exactly what it is, besides being infuriating.

I lose thoughts in an instant. Sometimes I actually “see” them disappear in the distance. It’s such a weirdly tangible sensation. I can try to grasp at their coattails and occasionally I’m successful in latching onto the thoughts and pulling them back. Other times I need to stop and walk back through my thought processes to retrieve them. And then sometimes they’re just gone. My desk at work is covered with post-it notes as a testament to what’s going on in my noggin. If there’s something I need to do I need to write it down NOW, and it’s not unusual for me to lose the thought as I’m in the process of getting something to write it down on!

This is what a walk down my memory lane looks like.

I can juggle up to three things in my mind at a time if I keep repeating them over and over again and work to maintain focus. Any more than that and it quickly crosses into the realm of hopelessness — it’s like knowing how to juggle three balls but if someone tosses a fourth at you, they all crash to the ground.

Then there are those chunks of awareness that disappear. It may simply be distraction and losing focus, but it feels like a hiccup in time that I don’t notice until it’s happened. It’s that “huh?” feeling as I return to present time when I realize that I’ve been gone for a second or two.

More disconcerting is a strange myopia that prevents me from reacting normally in a familiar situation. For instance, several months ago I treated a red light like a stop sign, and this was a familiar traffic light in my neighborhood that I’d been through many times. I briefly stopped at it, then drove through it. It was a “T” intersection that’s not terribly busy, but I did get shocked back to reality by the angry honk of a car that had the green and was probably wondering WTF I was doing. 

The bottom line is that I’m distractable beyond belief. My train of thought gets derailed before it even leaves the station. The first time I noticed this, my oncologist ordered a brain MRI, way back in February. Nope, couldn’t blame it on a brain tumor — it’s just chemo brain.

This feels demoralizing, especially since my memory used to be so good. I lament losing all those awesome thoughts and ideas. And I know they were awesome because I remember having them — I just can’t recall exactly what they were. Yeah, there will be more, but I better have a notepad nearby to write them down. I even had a better ending for this post, but, you know…