Brain Fog, Chemo Fog, Chemo Brain – no fun by any name
Being a brainiac became my identity
On meeting me, the usual feedback was: ‘wow you’re smart.’ Never, ‘you’re nice’, or ‘you’re kind’. I got constant reminders that ideas, theories, and knowledge were my contributions to whatever was happening. No one is telling me now how smart I am. Losing capacity to think lucidly, quickly, insightfully, and incisively is a loss that cuts deep.
Before and after treatment pictures of my brain might’ve been interesting.
I’ve always been able to recall conversations accurately. I could listen to parties in a conflict tell their stories and repeat their words back to them and they’d say: ‘yeah, that’s a good synopsis of what I said.’ Where I seem to differ from those in ‘the books’ about brain fog, is that treament hasn’t affected my memory. It’s the analysis of those memories that’s MIA. Thoughts are now random, slow and just sit there waiting for the ‘so what’ to happen. And it doesn’t. All the usual tricks for jogging memory with notes, highlighting markers, and creating stories of what to remember don’t help. Organizing the memories into coherent thoughts to create sentences – kaput.
From diagnosis in August 2010 until June 2012 I couldn’t focus my mind to read or write. I scanned newspaper headlines in a few minutes. At one point I said: ‘I’m bald, breastless, and can’t hold two thoughts in my head at the same time – OMG, I’m turning into a man.’ I’d often asked men who said they weren’t thinking anything if they really had no thoughts or if they were thinking something they didn’t want to tell me. They said, no, they weren’t thinking anything. I said, ‘how do you do that? How do you have no thoughts?’ My mind had enough dialogue going on for a whole cast of characters.
I’m a lot more understanding of the ‘I’m not thinking anything’ response. Been there, done that, still there. I’ve spent the last 2 years staring into middle space like a cat in a sunbeam on the window sill.
Here’s what it felt like until July 2012, and the reason I’m writing this blog to recover from it: Two side effects act as parallel events simultaneously in my mind as a result of the two surgeries, eight highly toxic chemo treatments, and twenty-five radiation sessions, plus all the bad news from the pathology.
1. The absence of analysis that was always easy for me. People talk and now I get a blank look instead of a response because I can’t follow the conversation. There’s no focus or concentration I can call upon to replace the quick study I used to be. Then I get frustrated and cry. Imagine what conflicting parties want from their mediator (calm, perspective, skill, smoothing them over their rough spots), and they get me sobbing instead. Yup, that’d make me want to settle fast just to get away from the blubbering.
2. The presence of cancer related fatigue, limited stamina, exhaustion, and temporary loss of my usual resilience. When I get tired, all the bad news comes flooding back, and my memory dredges up every word the doctors shared with me about the grim diagnosis, guarded prognosis, limited options, high risk for the future, and generally poor outcomes. What tires me – mostly #1 above and people.
Here’s my personal recipe for cooking brain fog.
Try to think or analyze,
get frustrated with reduced cognitive functioning,
have bad news memories break through usual dam of optimism,
get flood of negative thoughts,
dig a big hole of junk to wallow in,
go catatonic with anxiety about the poor prognosis
be sure I’m going to die in months and it’s all my fault for getting tired.
Repeat until well stewed.
Whew. This lasts until I can rest or talk myself out of it.
Can I write about how I am getting out of it, now that I’m finally feeling better? It’s conducting field research in my own mind to recapture the bleak vortex that sucked me down. I now use every shred of discipline to practice meditative thoughts, get enough rest, bring focus through a calming mantra, go for work outs at the gym, walk Trail the Westie often, use my Inner Healer named Terry, and excuse myself from situations where there’s people expecting conversation short of withdrawing socially . The only technique I didn’t use until this blog was journaling since I couldn’t write, and I wish now that I’d done it anyway even if it was jibberish.
Feeling whole, sitting in the garden on a glorious summer day is the opposite of the past winter and spring of being a partial person. Having a conversation when I’m tired is pointless. I stumble for words. Being with people for too long => stumbling for words. The change that turned the season from winter to summer for me was replacing stress with rest.
Bottom line is I’ve been given the gift of struggling instead of being a smart person. It’s a chance for me to see if I can come off as – maybe – nice, kind, or even sweet, not just intelligent. What a great time to see the problems in life as a pattern I recognize and yet can’t think my way out of, instead of being the problem solver
What a positive way to deal with this, Deborah — to find opportunities to learn and grow even as you emerge from the fog! Your final comments make me thing that in illness, we are forced to surrender control, if not to medical professionals completely, then to whatever it is that we believe in (if not God, then the universe). You’ve always been the problem-solver and clearly that ability to find connections and see answers remains. I love that you are finding patterns around you from what to someone else would be simple chaos. What can I say, my friend? I had no idea you were going through any of this — I read each post with an increasing sense of wonder at your strength and dare I say it — your fierce intelligence.