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Has anyone seen my mind? November 18, 2009

Posted by PAS in cancer, survivorship.
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The human brain

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I was reading the NYTimes Well Blog for Nov. 17, where Kairol Rosenthal of Everything Changes guest-posted about the frustration that comes when cancer patients have to deal with fogged brains altered by radiation, chemo and the long haul that is modern cancer treatment.

So often, survivors who are experiencing loss of focus and chemo-brain hear comments like “You think YOU’RE forgetful? Last week I couldn’t find my car in the parking lot.” My favorite well-meaning comment is “You couldn’t remember why you came into the room? That happens to everyone!” I swallow the reply I want to snap back: “Oh, really? Everyone forgets why they’ve walked into every room, over and over and over again all day long?” Instead, I nod, or shake my head, or smile weakly and try to move the conversation somewhere else.

The person who is trying to make me feel better by promising that forgetting things happens to everyone has no idea what it’s like to lose the details of my life. They may be momentarily disoriented when they forget where in the two-acre Wegmans parking lot they’ve parked; I freeze and dissolve in panic. Because that frozen moment is so paralyzing, I try to park in the same general area every time, go in the same door, make the same circuit around the supermarket. Routine is not just my friend; it’s one of many finely honed coping mechanisms on which I depend to keep some shreds of normal in my day.

But cancer wasn’t my first experience with the sensation of misplacing my mind. In 2000, I had an intracerebral hemorrhage – and the after-effects of that illness are things I still feel, things with which I’d learned to cope but which were worsened by chemo and treatment. Two years after the stroke, I had a neuropsychological exam (NPE) – a face-to-face IQ test on steroids that is conducted in three or four appointments spread over two weeks. That test was brutal – both the experience, and the results, which showed me both where I was still ‘stronger than average’ as well as where I was now weaker. Most shocking, to me, is that in areas where I felt I was clearly having difficulty, I was till rated ‘stronger than average.’ Clearly, I still had some skills, but my altered brain and self-image had a tough time recognizing those skills and using them to compensate for new weaknesses.

I had gotten insurance approval for the NPE after struggling for two years with sudden emotional shifts, flooding, inability to handle crowded or noisy places, difficulty tolerating stress, difficulty focusing and concentration issues. These and other post-stroke side-effects made me self-conscious about my skills as a teacher and my abilities as a research supervisor. I stopped volunteering as a medic for a few years after the stroke, telling the emergency team that I was no longer physically up to the job. The real story was that I was terrified that I’d lose focus during an emergency and forget something critical, compromising a patient.

With the help of a terrific counselor, I was able to devise coping skills that let me get through the day with a minimum of ‘visible’ effort. I cribbed some of them from an amazing account of traumatic brain injury (TBI) rehabilitation written by Claudia Osborn, MD. Out for an evening bike ride, Osborn was hit by a car – but it took several months before her TBI was correctly assessed. She began rehab, and as I read her story, “Over My Head,” I was struck by how similar her TBI side effects were to my own post-stroke issues. I researched Osborn’s rehab, TBI and its cousin acquired brain injury, discussed an NPE with my counselor and doctors, and the rest was history.

Then I got cancer. And four months into cancer, I had two smaller hemorrhagic strokes. I was terrified to continue chemo, terrified to stop it. Surgery for liver metastases was now off the table. I was officially downgraded from surgical candidate to palliative care, and wouldn’t be reconsidered for surgery until I’d logged six more months of brain recovery. My oncologist listened and questioned me as I explained to him how scary it was to have to assess and evalute my escalating symptoms and side effects after each treatment, explaining how the side effects of stroke and of chemo are often exactly the same. Somehow I needed to learn how to tell the difference, to know when to call the oncologist’s office, when to call 911, and when to do a round of finger exercises, take a breath and try to relax. When to accept that it was just the chemo stealing a few more brain cells – and not an actual stroke blowing them out of commission.

But at the end of the day, five chemos past that summer of 2004, I’m not sure which was worse – waking up from a stroke unable to recognize the numbers on the telephone, or seeing the open refrigerator door and realizing that I’d left it open again (how long? oops, maybe all night!) At the end of the day, the brain cells are still missing in action, and here I am, wondering in which storage room I have accidentally checked my brain

I still swallow, hard, when someone tells me “Oh, hey, if this is one of your bad days, give it to me. You’re sharper on a bad day than most people are on a good day.”

Maybe. But it’s hard to believe that when I usually feel like I’m running as fast as I can just to stay in place.

Have you noticed that you have trouble focusing, concentrating or remembering things since your cancer treatment? Does it happen often, or only once in awhile? How are you coping with these slips?

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1. Whidbeywoman - November 19, 2009

My husband has Chemo Brain/Brain Fog really bad right now. We’ve decided he should not drive right now, he keeps forgetting his wallet. He says he remembers to stop at stop lights, stop signs, etc. but we are not sure how mentally sharp he is. Hubby also has word-finding problems. Things will come out of his mouth that doesn’t always make sense… he’ll use one word when he meant the other. He had this in treatment before. The good news is, for most people it goes away afterwards…
I go with him to doctor appt. because he can’t remember what to tell them. We use sticky notes a lot. As caregivers it is important to cue them in on things… taking meds, drinking enough fluids, etc. My husband was frustrated at first but has resigned himself that this is just the way things are for awhile. I have several posts on this subject on my blog with some helpful links.

2. aftercancer - November 19, 2009

Thanks for the article. You know, I understand when people try to equate their general forgetfulness to what we are going through. It is an effort to try to make me feel better, honestly I understand, but one day I am going to snap.

What I have found is that no one seems to notice the changes as much as me. I find them humiliating and like you have developed coping strategies. Thanks for sharing your story.

3. Mind-Sharpening IQ Tests | Test Prep Books - November 19, 2009

[…] Has anyone seen my mind? « Life Out Loud […]

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[…] This post was mentioned on Twitter by PAS, PAS. PAS said: New blog post: Has anyone seen my mind?: http://wp.me/pxOen-4X #survivors #chemobrain […]

5. Rotorhead - November 20, 2009

Didn’t believe in chemo brain until I experienced it. Yes it affects me, however I power through that sh*t, and repress the thought of it. Might come back to bite me someday but for now it gets me through the day. I write things down rather obsessively at work to at least have a record of critical thought throughout the day, and take time each day to deep-think (usually while running, which is mind-numbing otherwise). It’s the new normal.

6. gaelenscafe - November 21, 2009

Meditation is my version of ‘deep-think’ and it’s definitely one of my coping skills. Post-it notes, my PDA and now my Blackberry – each set with multiple alarms, the notebook I carry with me constantly at work – other coping mechanisms that get me through. Daily movement and exercise help, too, by stimulating the neural pathways.
But one of the easiest for me to put into practice and maintain has been routine for small tasks – an order of things each morning means that I don’t ‘forget’ anything before I leave the house. Carrying a permanent shopping list might mean that I have five cans of tomatoes with chiles – but at least I don’t run out of them any more. There’s definitely improvement, and the miracle is that once you give yourself permission to figure out new ways to do things, the human mind is amazingly adaptable. The newly drafted brain cells still scream ‘this is not my job,’ but at least they function – most of the time!

7. brokenbrilliant - November 22, 2009

I know the feeling of being told, “You think YOU have problems…!”

Not sure why people do that, other than to make themselves feel better.

I have found that morning exercise — 20-30 minutes of calisthenics or riding an exercise bike, first thing in the morning before I do anything else — has done more for me and my ‘broken brain’ than just about any of the other coping mechanisms I’ve come up with — and I’ve come up with quite a few.

Getting the blood pumping to my brain, first thing, has made a huge amount of difference. Plus, it moves the lymph through my system and helps clean out the sludge.

I’ve never felt better — and I’ve felt pretty bad for a number of years.

Good luck with everything


8. gaelenscafe - November 22, 2009

Good like right back atcha, BB – and thanks for stopping into LOL.
Calisthenics and bike riding – even walking – are beyond my balance skills first thing in the morning – but yoga stretches do accomplish the same things for me, turning on my brain so that it can remind my body how to work.

I’ve admired your blog ‘Broken Brain, Brilliant Mind’ for a long time – and I completely support your efforts to raise awareness of the issues involved in TBI and mTBI. I literally stumbled on the TBI diagnosis profile after my stroke, when no one could really tell me what was happening to me or why I was having the reactions I had. It saved my life to discover that TBI existed, that stroke survivors’ ABI (acquired brain injury) often produced the same side effects and behavioral/emotional symptoms. It was a starting point for getting better when neither I nor my couselor had any reference points at all.
Be well, BB.

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