Losing it?

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I’ve had some scary experiences lately.

* My cordless phone suddenly switched to speaker. I had no idea how it happened and could not for the life of me figure out how to switch it back until I had randomly pushed lots of buttons.

* I somehow managed to delete a whole folder of bookmarks from my browser irretrievably.

* I realized that I had forgotten to salt the soup, salted it, tasted it, then realized that I must have salted it at least three times already. *

* I found myself utterly stymied in navigating a website that I use frequently.

Each of these is a little thing, but heavy with significance: is my mind going? Is it chemobrain still? (Can chemobrain get worse even after years without chemo? I doubt it.) Or is it, as my wonderful friend Aliza likes to say euphemistically, anno domini, increasing age?

Either way, it scares me to death.

My mind has always been a touchstone, a given, the one sure thing in a life that has often been disrupted by difficulties and tragedy. No matter how hard my external circumstances were, I could always count on that inner resource: a mind that could observe, analyze, evaluate, plan, and find solutions, workarounds, or ways to cope. What will I do if I lose that?

I suppose I’ve relied too much on my intellect in the course of my life, but it is very difficult to change that habit now. For some years I’ve been working on becoming a kind person, and I hope that when my mind goes, as I now believe it will one day, the kindness will remain. Good-natured patients receive better care than nasty ones. It shouldn’t be that way, but it is. **

The DSM V doesn’t talk about dementia; it talks about minor or major neurocognitive disorder. I probably meet the criteria for minor neurocognitive disorder, but I don’t see the point in going for neuropsychological testing at this point. What scares me is the possibility (probability?) that my deficits will worsen to the point that I lose my independence. That scares the petunias out of me.

My problems (loss of balance, decreased hand strength, memory problems, etc.) could also point in the general direction of brain mets, but I’m doing a Scarlett O’Hara on that one. I’ll think about it tomorrow. I am still avoiding doctors as much as I can, and I intend to continue in that vein.

The main thing for me is to do what I can to maintain my cognitive function and then to let go of the anxiety. I do crosswords and jigsaw puzzles and logic problems. I engage with people. I keep up with the news (tragic though it be). I write.

One of the most unfair things about living with metastatic breast cancer is that you don’t get a free pass on the other stuff. Be this brain mets or aging, all I can do is what I always try to do. I try to maintain a humor-filled distance between myself and the Bad Things, take the practical steps that are in power to do, write about my fears to expose them, pray, let go.  Prescribed meds as required. Keep on living until I die.

* My fix: simmer some big pieces of potato in the soup and then remove them. They’ll take a lot of salt with them, and you can use them later for mashed potatoes or home fries or something.

**I have read journal articles on this point, but I can’t come up with the right search terms to find them now. My mind is being unreliable again.


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22 Responses

  1. It does sound a lot like chemo brain. I am 3 years from my last chemo and mostly have my pre-chemo brain functions back. But when I get over tired or overwhelmed by stress, the old symptoms creep back in. I lose things. My kids tell me of conversations we supposedly had the night before and I don’t remember them. The most significant sign for me is the loss of my words. A simple word like “lamp” will suddenly be erased from my short term memory bank. Or the right word is in my mind but the wrong word comes out of my mouth. My kids think I am being silly but I find it scary. It gives me a glimpse of how it must feel to live with Alzheimer’s Disease and I don’t like that feeling at all. My oncologist said chemo brain can be a long term side effect so I’m embracing that explanation as all the other possibilities are too horrible to contemplate. Here’s hoping that this too shall pass for you.

    I agree that once you have cancer, you should have a free pass preventing you from getting any other life altering conditions!

    • Knot Telling says:

      Thank you, Sharon. I’m still trying to cling to the chemobrain explanation, but my last chemo was over three years ago and it’s getting worse. The not finding words thing is the worst for me, too, since I was a professional translator.

      Thanks so much for reading and sharing your own experience, Sharon!

  2. jdubya says:

    You are so articulate your cognitive systems haven’t failed yet; i have not had chemo yet i have all these symptoms at times at 54 with a life being lived at full bore with 3 children, commuting and work. I lose things; forget entire books; substitute nonsensical words. I too fear dementia, not now certainly, but science says many/most of us will experience it if we live long enough. I am rambling, but responding to say i admire you and your tenacity and will. I wish stability to you in the new year.

  3. Tracy says:

    Chemo can disrupt brain function much longer than was thought. Research into 5-FU has shown a lasting effect including cell apoptosis in certain areas of the brain. I expect there is much more to be discovered about the long term impacts of chemo within the complexity of our bodies. Not that it will help us because we’ve already had it and didn’t have many options at the time. There are lots of other things that can impact brain function too – certain anaemias, stress, tiredness – and of course age. None of us knows what’s around the corner so all we can do is keep trying and make the most of the here and now. I hope there is a non-cancer related explanation for your symptoms Knot.

  4. Yes, I wish you could get that free pass on all the other stuff. Perhaps you’re being too critical of yourself. One thing’s for sure, your writing sounds as well thought out and as articulate as ever. I guess I’d just say why worry about it now? I know that’s probably unhelpful, but some things are beyond our control. You are doing what you can to maintain your cognitive function. That’s about all you can do. As for me, my mind isn’t as sharp since dx, or chemo, or whatever the cause. I refuse to accept the aging thing. One thing I’ve noticed is that I have a lot of trouble concentrating on reading a book now and this is bothersome as I’ve always loved to read. And I cannot remember stuff like I used to, to the point that others do notice… I don’t ‘know’ you, but yet I do ‘know you’ and I know (that’s a lot of knows, sorry) you are indeed a kind soul and I believe that attribute will remain with you always. xx

  5. Sandra says:

    I found that doing yoga has helped with my balance. I’ve been using a website called doyogawithme.com for a little over a year. They have programs of different lengths and for various levels. There is one called “Restoring Balance” that I did for about 4 months. I also think that following the instructions and translating the words into body actions helped with my chemo brain as well. Hope you can find ways to overcome your chemo brain symptoms. It is pretty frightening to experience that when you have relied on your intellect for most of your life.

    • Knot Telling says:

      Thank you for the suggestion, Sandra. I’ll give that site a look. I’ve found that working on my treadmill Dorphina has done a lot to preserve and even restore balance, too.

  6. Beth Gainer says:

    Hi Knot,

    You sound like you’re going through what I am. I had chemo 13 years ago, and my brain has never been the same. There is research, like someone said earlier, that chemo has a longer-term effect on us than was originally thought. My doctors think it’s just age, but I know better. You are intelligent and write so well. What you are experiencing could be chemobrain.

  7. JSM says:

    Well, it may be cold comfort – but many/most people “show up” with far less than 100% of their capacity and they do okay. Showing up is, what – 90%? 95%? I used to hate that “statistic” but now it is somewhat comforting.
    I know you don’t want to *just* show up, but I’m just trying to say that bringing all you have will be plenty. Trust your gifts. xo

  8. Lisa says:

    Just one thing to consider, it did happen to me. Chemo causes gastritis, we all know that. But the gastritis can damage the stomach’s ability to produce enzymes needed to metabolize vitamin B12. The vitamin is needed for red blood cell production and for neurological health. The liver stores enough B12 to last for many years, but once it’s depleted symptoms happen. The symptoms can be anemia, balance problems and mental deficits that can mimic dementia. The good news is that it can be treated with B12 supplements. I give myself a shot once a month, but it can also be obtained in pills everyday, and the pills are over the counter. There is almost no danger of getting too much B12 because the body will just eliminate what isn’t needed. Just something to try. The condition is called Pernicious Anemia.

  9. Kathi says:

    Just want to add to the reassurances your friends have already left you. Cancer treatment of almost any kind has been found to cause long-lasting cognitive issues. So will irregular sleep, chronic pain, a headcold, the stress of trying to comprehend miserable world events, etc., etc. The good news is that these things usually wax and wane. We all have those days when our brains just don’t work right. I don’t know if this helps, but I can tell you I have experienced every one of those things you described. And then, after acknowledging my frustration, recovered my equilibrium on another day. I also think the utter protracted misery you just went through with the blog is enough to throw you off. Been there, done that, almost had a nervous breakdown until it was fixed. I also read something recently that said that intelligent people often notice these glitches more than others because they are intelligent & perceptive, & consequently feel much more concerned about them.

    Hang in there, my friend. You are still one of the smartest people I know. xoxo, Kathi

    • Knot Telling says:

      You’re a sweetheart, Kathi. Especially, thank you for reminding me how large a role stress plays in all this. I noticed it again this past 36 hours or so without water (and so without a flush toilet). Rather, I didn’t notice how stressed I was, but I certainly noticed the wave of relaxation that washed over me when the water came back on.

  10. Maxine D says:

    Knot I have not ignored this post, rather I did not know how to answer… having not walked the road you are walking. All I can say is please keep writing for as long as you can – I so appreciate your work.
    Prayers and blessings

    • Knot Telling says:

      Thank you, Maxine. Your kind words are always so encouraging. Writing is like breathing for me: I can’t really NOT do it.

  1. 10 January, 2015

    […] Knot has a worry on her mind this week. […]

  2. 11 January, 2015

    […] * I realized that I had forgotten to salt the soup, salted it, tasted it, then realized that I must have salted it at least three times already. * […]

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