Monday, July 26, 2010

Chemo Brain Drain

Of all the thing I've lost, I miss my mind the most. -Unknown

It's been 4 years and I still struggle with my memory. I'll never forget being in the hospital getting my first week of chemotherapy and feeling like my brain was complete mush. I forgot things as soon as they entered my head. When I mentioned it to the nurses they just sort of giggled and said, "Oh that's just chemo brain".

Because they laughed it seemed like it was just a small problem but I was horrified. I assumed it was only temporary but as I looked into it, it seemed to be less and less so. I spoke with a woman 2 years post transplant and she kind of lightheartedly laughed about it too. She told me that it hadn't really gotten better, she had just learned ways to cope with it.

I was not impressed.

When I was zipped off to my new life in the hospital, I was in the throws of academia... now I apparently can't even spell academia right.

Some people get angry when they are told after chemotherapy that they'd never be able to have children. Well, they told me that and I wasn't bothered. I was, on the other hand bothered that I wasn't told that my mind would be altered. It was like a little joke of an after thought.

Even as I write this it makes me really angry. I realize there wasn't a choice, I needed treatment or I would have died but really?

*crack out the violins because I'm going to whine*

My mind was my greatest asset. I am smart. My memory was like a steel trap. I could learn thousands of facts in a day and ace a university exam that afternoon. My grades in my classes were at the very lowest %92. Usually I was %96 and higher and I worked hard for it. I often wondered how high my grades could get if I wasn't single handedly raising my three sons at the same time. I excelled under pressure and had honed my skills to ace the GMAT exam, I wanted nothing lower than %100. I was a multi-tasking Queen.

My memory made me feel powerful.

After my three rounds of chemo before my transplant, I retrained my brain to be able to read again. At first my eyes couldn't focus and I was reading the words blurry eyed but after a few weeks I was reading at a normal speed again.

After the transplant is another story. I received the highest doses of chemotherapy possible to prep my body for the stem cell transplant and my mind went with my old immune system.

When I was home and it was still early days I watched an episode of Judge Judy where she was yelling at someone, "would you rather be stupid and have your morals or smart and no morals?" I was so scared and unsure of whether I had either.

Things have gotten a lot better since then but my memory is still lacking. On my journey of finding out about chemo brain and it's effects I saw a neurologist who MRI'd my brain. I was not leaving anything to chance, I wanted my highly functioning memory back. She told me that there was no obvious damage... yet here I am.

She explained that they think it's like each cell in the brain being a little dehydrated. As a whole it's fine but each cell is just slightly withered.

I also learned that the effects of chemo on the brain was discovered by educated women who weren't happy about their diminished cerebral capacity. They complained and they complained hard and finally someone took notice. Everyone I spoke to assured me that it was real and not in my head. My inner response was, "Duh!" There's no need to convince me, but I guess the medical system was just catching on that chemo brain is real.

So, as I wait for the medical world to catch up, I constantly walk around in circles wondering what the heck I was looking for, or what the heck my post was going to be about?

Oh yes, my new coping mechanisms. Currently I am sticky noting a wall. I review that wall as I sit at my computer because I feel as if I have lost my head. I have personal theories that chemo brain is also wrapped up with early chemical induced menopause, because why else aren't the men complaining? For me, I know it's also tied into not being able to sleep but that's a whole other post. You can't make memories without sleep.

Shame on the medical community for treating this as a joke. My super powered, previously high achieving brain does not appreciate it. And comments like, "welcome to everyone else's world", when I lock my keys in the car for the hundredth time and kill my car battery because I left my lights on for the zillionth time, don't help either. Ditto to, "you're getting older, that's what happens".

So this has created new depth to that old saying, "Of all the things I've lost, I miss my mind the most."

I really, really do. And I'm really not sure what I'll do when that sticky noted wall has reached capacity.

*I'd love it if you could post your personal coping strategies for memory loss in the comment section. Then we can all benefit by sharing*


Jens said...

Yes, this is certainly annoying for you. It may be that you've lost a lot of knowledge that many others could not achieve in their whole life. But you still have your intelligence and talent. I can see that. I think
that your memory will improve again. Slowly but surely (as we say in Germany).

BaldyLocks said...

I appreciate that, Jens. I really hope it's true and that I get my memory back.

Caroline said...

I don't use sticky notes. I use pads of paper and write out endless notes. I have online to do lists for my jobs so I remember what I'm supposed to do when I get there - and what I did the last time I was there. My husband laughs at me but he has ADD and horrible short term memory so he completely understands where I am coming from. I think my brain is getting better - very slowly but it is improving.

BaldyLocks said...

I try and use my computer's calendar but sometimes I forget to check it. The sticky notes are a bit more in my face but sometimes I don't think to look at them.

I used to make lists BC (before cancer) but now I will make a list and I'll never see it again. I wonder if there is a little spot where they are all hiding in.

Writing on my hand works well unless I take to long and it gets washed off. I guess it's all about learning which coping mechanisms work for you. I'm still searching.

Pahavit said...

I have severe brain fog due to ME/CFS, and probable infection with the retrovirus XMRV (test results aren't in yet). Brain fog makes my life a living hell. I've cried my eyes out more times than I can count because of a brain that simply refuses to stay in gear and pops into neutral without warning umpteen times a day.

I write things down but I forget to refer back to what I'd written. Even when I look, I'll forget what I'd just looked at literally two seconds later, even if I repeatedly look and repeat it out loud to myself.

Sometimes I forget what I was supposed to write down by the time I get to the paper and pencil. The slightest little thing will distract me completely and I've forgotten what I'd been thinking about and it's gone forever. That spaced-out feeling never goes away, as if I'm half-anesthetized. After over 20 years of ME/CFS, I've resigned my self to living an "off-stage" life.

Jodie said...

It's really one of those elements of cancer that you never hear about, so thanks for the education about it. By the way, education through whining is my favourite way to learn!
When I was diagnosed with lymphoedema, I was told, "Work less"..."Stay off your feet" blah blah blah. Only problem is, if I follow all the advice I get (always presented with a nice, big, positive smile), I wouldn't get anything done.
It really does suck when your body betrays you. I hope there's an answer out there for you. Jx

BugginWord said...

I put things in my calendar with an alarm - so then they pop up the day before I need that knowledge, and then an hour before, and then fifteen minutes before, etc.

Also, I have house keys hidden all over my neighborhood because I look myself out at least once a week.

Honestly I think the best thing you can do is get enough sleep. When I get run down, my brain just quits. Sometimes I have to do my best impression of broccoli for a few hours before I can remember my name.

Susan C said...

Have you heard of the book Your Brain After Chemo? It not validates what you're talking about, but offers support and strategies.

The author, Idelle Davidson, has an excellent blog at

BaldyLocks said...

I think I have that book, Susan but I've never felt like I had enough brain power to read it. I should dig it out and try to read it.

You guys gave me a good laugh this morning! lol at the learning by whining and the impression of broccoli!

I often say I'm perfectly qualified to be a paper weight now.

Anonymous said...

I find it frustrating too! I also put appointments into my yahoo calendar which emails me reminders. I also send myself emails and put reminders in the subject line so I don't even have to open the email. I used to be a voracious reader. Two to three books a week. If I've read that in the last year I'm lucky. I could go on and on! Oh and Your Brain After Chemo is a great book. I didn't finish it of course but if I could I'm sure I'd have liked it!

BaldyLocks said...

You're too funny! I used to be an avid reader myself and find it embarrassing that I can't seem to finish a book now.

Despite that I still love browsing the book store shelves.

Dawny said...

My memory departed whilst pregnant, and contrary to popular belief, it really did and never returned.

I now resort to adding reminders on my phone and every morning, mid-day, and afternoon, the beep goes, and off I go to whatever appt is next.

I would be lost without my phone :O)

It works for me....and I have resigned myself to the fact I will never remember much ever again.... but I'm fine as long as I have my phone haha

BaldyLocks said...

There seems to be a lot of good arguments for the cell phone. I won't be able to get one of my own until my boys are out of the house because while they are here, we need a house phone.

So that is several years away. It sounds like a fantastic tool for a loose memory :)