Cognitive Rehabilitation

[rhondalea]

The site going down was a blessing for me, because I realized just how much I rely on its existence. All my attempts to post since Denise died have ended in failure, but I did my best to keep up with what was going on. (So even though some of you don't know me, I've met you, and I think of you and hope the best for you.)

I still have a hard time writing. I can manage Facebook because shares don't take thought, but everything else that has anything to do with stringing words together to make sentences--oral or written--has not gone well. Not at all.

Two paragraphs, and I've still not gotten to the point. That's one of many problems I'm facing--I can't keep my train of thought on its track, so I babble.

So...

I had my first cognitive rehab session yesterday. The purpose was intake, so there wasn't a whole lot of therapy going on, but boy, was it an eye-opener.

All those brain games? They probably make chemobrain worse. In fact, nearly everything I did to try to make chemobrain better had the effect of making it worse.

It turns out that what an injured brain needs is the same thing any other injured body part needs--rest. Time to heal. The example the neuropsychologist gave me was a runner with a leg injury--even if she was running 10 miles a day before the injury, an attempt at 5 miles after the injury will only delay healing. Baby steps. It's all about baby steps.

I've been instructed that I've been pushing myself to hard, and I am to take breaks.

-Reading is not a break (and in fact, she told me I should probably only read for 15 minutes before I take a break).

-Playing a game of solitaire is not a break.

-I'm not sure about housework, but cooking probably isn't a break.

-I don't watch TV, but if I did...you guessed it: it doesn't qualify as a break.

-Posting here and reading here (or anywhere else online) is not a break.

-In other words, nearly everything I consider relaxing...isn't. At least, not for my injured brain.

She told me to "think primitive." Firelight, not electricity. I can go for a walk. I can sit on the porch and drink a cup of tea. Well, okay, electricity isn't totally out, because I can listen to music. I suppose I can daydream, but I can't sit and let my thoughts grind about the things I need to do. If I could remember how to knit, it might be okay, but the relearning process would not count as a break. Grooming the kitties is acceptable, but I'm absolutely certain that sorting my piles in the basement is out. P.S. Running errands today didn't feel like a break because the wheels were turning in my brain the entire time.

A long time ago, I signed up for notifications from calm.com so that I would know when their Android app was released. Then it was released, and I ignored it. Yesterday, I downloaded the app to my phone, and I added the site to the task bar on my computer. I've used it today, and I think it, too, may qualify as a break. It features new age-y (very soothing) music and a serene scene to watch, unless you use the guided meditation feature. For that, you close your eyes and listen and relax. I managed two minutes the first time, but I've since worked up to five at a time. Seems to help, because I felt a lot better afterward.

Googling for clues about resting the brain after an injury, I came upon the tidbit that blinking rests the brain. Here's a link:

http://articles.latimes.com/2012/dec...-rest-20121227

Today, I have practiced blinking. It's quite a lot of work to remember and then do it, but it does help me feel more clear-headed. Long ago, I remember reading (and then noticing) that part of the problem with computers is that people blink less than normal when looking at the screen. Remembering to blink helps the brain and the eyes.

Now the bad news. Most insurance seems not to pay for cognitive rehab. The program I'm enrolled in offers charity care, so I would guess that other facilities have similar ways of covering care for those who are not covered by insurance. (I am, but they thought I wasn't, which is how I learned the option was available.) It seems downright sinful to me that this service isn't routinely offered to individuals with cognitive deficits on account of cancer, because just one session has made a huge difference for me.

About that difference... I have a lot of doctors. All but one wanted--desperately--for me to be depressed, so that they might write a prescription and send me on my way. I kept saying, "I've been been depressed. I know what depression feels like. This isn't depression." For some reason, though, the medical establishment has a default setting: "If we don't know how to fix it, it must be in your head." To tell the truth, I started to fear that I would become depressed because of how dismissively I was treated and because there were so many really stupid roadblocks in the way of my getting the appropriate care.

Well, they can all bite me. In a single session with this neuropsychologist, it became clear that everything I was experiencing is so common to brain injury as to be pathetically pedestrian. As I sat there with my jaw dropping, she told me what was happening to me--it was as if she'd been watching me go about my daily life for months on end rather than just meeting me minutes earlier. All those doctors I mentioned above? They're about to be on the wrong end of an earful.

I encourage anyone who is having any cognitive problems at all to have a neuropsychological evaluation. If nothing else, the validation is life-altering. The coping tools offered afterward the diagnosis are just the icing on the cake.

P.S. In case I don't get my sig fixed right away, I am no longer on Aricept. It helped a little in the beginning--which may only have been a placebo effect--and then it seemed to make everything worse.

[JennyB]

Rhondalea - so good to hear from you again and also glad you decided to take time off from'resting' and write such an eloquent post. I am going to go and download calm app it sounds perfect for me - I find it hard to just 'be'!! So thanks for that - I will let you know how I go!

[rhondalea]

How are you, Jenny?

I hope Calm helps you. My other tactic has been to obtain a Pomodoro timer. Rather than 25 minutes, I have it set to 15. I'm hopeful that it will remind me to take my breaks more regularly. Now I just need a reminder to blink (but I'm getting pretty good at that, anyway).

I hope to keep this thread updated with whatever techniques the neuropsychologist teaches me. (The above were not her idea, and although they seem useful, if she nixes them, I'll mention it.)

[StephN]

THANKS, Rhonda! So glad to know you have taken further steps to work on your cognitive difficulties. I knew I needed rest. I just *could not* make myself do things for quite a while. Felt like my head was in a cave.

I will be back to download the calm app. There are always moments we can use that, even if not on a regular basis.

[BonnieR]

Thank you SO much for sharing that! What a pleasure when we find someone who understands You must have felt such relief and validation
I remember being in a breast cancer group therapy session and I mentioned chemo brain. The facilitator said it did not exist But there I sat, someone who could barely drive myself to the sessions because I couldn't remember how to get there. Or back home I felt so disrespected
I found that a mindful meditation program helped. It came with CDs too. But it was SO difficult to just BE and stop the monkeys swing from branches in my befuddled brain
I'm much improved with time
Keep the faith

['lizbeth]

Good post Rhondalea. I find I am struggling less and less with cognitive issues after 7 years. High levels of exercise while listening to music was helpful in the first years after chemo.

I didn't purposely rest my brain. Still the emotional upset and frustration if I feel I can't do something I could before is likely the worst for my memory.

Thank heavens the cognitive issues are being addressed more and more.

You are one lucky lady to find a knowledgeable neuropsychologist to work with. I love the information you shared.

[caya]

I am chiming in here for 2 reasons:

1. My DH had a brain aneurysm 9 months before I was diagnosed with BC. We were lucky - he had what are called "sentinel bleeds" (warnings) - so after 3 weeks of about 4 episodes a CT angiogram found that aneurysm. He had a coiling procedure (they stuff the aneurysm with platinum coils shot up through the groin to the brain) and it's been nearly 9 years and he is fine. But it took a lot of time to heal - the neurosurgeon told us it would take about a year or more for him to be "okay", that rest is the number one thing the brain needs. He also had cognitive therapy once a week for many months (supplied by our provincial government health care).

2. I found I was not myself until I finished my 5 years of Tamoxifen and Femara. Physically, emotionally, mentally - I realized about 6 months after I was off the Femara that I was "me" again. More energy, more focused etc. I think the effects of those anti-hormonal drugs are not given enough credo and often are "sloughed off" - take the drugs, ladies, and suck it up. Be glad you're alive. Of course we're glad alive, but guess what, it's not perfect, and there are issues!

all the best
caya

[michka]

Hello Rhonda. Cognitive issues make us feel so miserable. (And doctors should listen to their patients and not think depression at first). Are you still taking Tamoxifen or another anti hormonal?
A few years back I started to have cognitive problems and it got to a point where I could hear my husband talking to me but I did not understand the meaning of his words. I would just start crying and ask him to stop talking. It was really frightening. I was wondering what was happening and thinking of a brain tumor. I called my onc and he said "stop Aromasin right away". I had been taking it for almost a year.
All my cognitive issues then disappeared. He put me on Faslodex after a break.
Of course I do not know if your "chemo brain" is linked to your initial treatment or to an antihormonal or something else. It is just to let you know it can happen because Estrogen is important for our brain.
I hope things will improve with time and rest. I am happy you were able to write about it and share your feelings with us. Stay strong.

[Debbie L.]

Oh man! I just wrote an (overly) long post, after logging in, and when I went to submit it, was asked to log in again, and the post disappeared. Argg. Trying again. Maybe I can be more succinct on the second try (but probably not, smile).

Rhondalea, thank you for posting about this. I look forward to hearing how the rehab process goes for you. I send sympathy, empathy, and many good thoughts for what you're going thru.

It's encouraging to know that there is more and more attention being paid to the cognitive issues around cancer treatment. But it seem to me that they don't (yet) understand even the basics.

For example, I see two different things going on. Many report that during treatment, they have trouble -- a sort of "brain fog". Given the assault to our physical body (surgery, chemo, radiation, estrogen starvation), and the emotional hits (fear, anxiety, anger) -- it's no wonder that the brain is involved during this time. The fact that some studies that have shown these symptoms to be present just after diagnosis (before treatment) lends credence to the emotional component. But for most, it seems these issues resolve over time, after treatment ends.

I did not notice much of a problem during treatment, apart from the times when the fatigue hit. There should be a better term for that fatigue -- it felt more like impending coma -- but that's another issue.

For me, the deficits I noticed did not start until well after chemo ended, months into my 2-years of Arimidex. And they did not resolve (at all) when I stopped Arimidex. They persist, 13 years later. My issues are all about short term memory and multi-tasking ("executive function"), especially at work. It feels to me like I still think and reason fine, and am able to learn new things as usual.

I, too, had a neuropsych testing, at first as a part of a study I took part in at Stanford. The PI, Sheli Kesler, has been looking at change in the brain after chemo, and at the efficacy of "brain games" to improve brain function. The games she uses are Lumosity. After my part in the study finished, I returned to Dr. Kesler privately, for more extensive testing. The results of the testing were validating. Although I tested in the normal range overall, the differences between my high-normal functioning in most areas, and my lower scores in executive function, were striking. I went to her because I was concerned (to put it mildly) about my ability to continue doing my job (L&D nurse) safely. Her recommendations were that I take a smaller patient load, get more help, and try to reduce my anxiety about my performance. Hah! That may be do-able in some settings but it just doesn't happen in nursing, at least not where I work(ed). I felt that my patient care was fine, but not so much the many details that go with nursing nowadays (documentation, regulatory requirements, etc).

I limped along at work for another 5 years. I guess I was fortunate in that I was able (financially) to work less, and to carve out some job chores that were less intense. Having turned 62 last spring, I finally decided last month that it was time to retire. What a relief! Until I did it, I had not fully realized how the stress had been hanging over me -- constant worry that I would make a serious mistake, and also that I wasn't doing my share. This (I now realize) hung over me all the time, not just when I was actually at work.

I'm sad that I had to quit working sooner than I wanted. I'm sad and frustrated that there is no recognition nor understanding of the problem. Over and over, when I complained about my issues, I was told by both peers and providers that I was exaggerating -- that we all experience these things as we get older (and/or enter menopause). I knew it was more than that, but was reluctant to press the issue, not wanting to be a whiner, wanting to be a good girl. And not knowing how to solve the problem, short of quitting my job, which would have been financially (and emotionally) difficult.

Not sure where I'm going with this ramble. I guess my main point is that the validation (of the testing, and of Dr. Kesler's thoughts on the results) was somewhat comforting (although of course, upsetting). At least I knew, within myself, that my problems were real, even if no one (apart from fellow breast cancer friends) understood it.

I continue to play the Lumosity brain games that were part of my initial study participation. I don't know if they help, but they are fun and challenging and it's somewhat reassuring to see that my scores don't get worse, and that I'm up there in the percentiles, when compared to others my age. It helps to think that they might be helping -- that I'm doing something. The other "something" that I imagine/hope might be helping is continuing to be physically active. I know that exercise at least helps reduce my anxiety and improve my mood, even it if doesn't directly help my brain function.

Even here, where I know we're understood, I worry that this sounds too whiny. Overall, looking at the big picture, I'm immensely grateful to still be here, still living, with relatively minor problems compared to what so many are going thru.

Okay, I've copied/pasted this to Word, in case it disappears again. Crossing my fingers as I hit submit . . .
Debbie Laxague

[AlaskaAngel]

The cognitive problems I had fell into 3 categories:

1. When I was treated in 2002 and asked about chemobrain, my onc said "in 25-30 years of treating patients, I can count the number of patients on one hand who were totally disabled mentally by treatment". Because I could not get any scientific answer to my question, on my own dime I had a standard mental testing done at the time as a baseline. For cost reasons I have not had testing repeated. But my point here is, why hadn't it been similarly investigated medically BEFORE exposing patients to such treatment in the adjuvant setting? If I could think of it with my puny brain, why hadn't it been done?

2. I had some problems during treatment and in the "recovery" period afterward.

3. I too had to give up working 10 years after completing treatment when such things as multitasking and executive function were involved.

Hopeful posted this article link recently, and although my ability to find an earlier article she posted about the impacts on work doesn't seem to be functional enough for me to find that article, maybe she will see this and post it for us again:

http://her2support.org/vbulletin/showthread.php?t=62037

[AlaskaAngel]

Talk about forgetfulness.... I meant to mention that I also wonder about an experience I had during chemo. I was up early and doing some paperwork the day after receiving my third dose of CAF and support steroids (plus anti-anxiety med), and was looking at the computer screen, and suddenly I could not see. Everything was black for both eyes, no matter how I tried straining to see. It lasted a few minutes. During that time I felt a cold wave start at the back of my head that slowly washed upward under the scalp, ending with my forehead. When it ended, my vision came back normal.

When I asked my providers about it, they asked if it had only happened once, and when I said yes they gave me a professional smile and changed the subject. No clinical note was ever made containing that information I provided to them.

A.A.

['lizbeth]

Debbie - Your post is not whiny, it shows a great example of how you were affected by cancer treatment.

Alaska Angel - that is truly freaky about your vision loss. Even more freaky is how it came back with a cold wave.

Mikha - I had something similar happen with an overdose of benadryl. I could see my doctor's lips moving, but I could not hear any words. They would blip in and out, like a short circuit. I stopped the benadryl and it took about 10 days to get back to functioning. I think it affected my acetylcholine.

Rhondalea - good timing on this thread. Lots of good information for thought.

[Hopeful]

AA, is this what you were looking for?

http://www.news-medical.net/news/201...ars-later.aspx

This also seems to be on point with the thread:

http://her2support.org/vbulletin/showthread.php?t=60877

Hopeful

[AlaskaAngel]

Hi Hopeful! Yes, that is the article -- thanks for reposting it here.

My job required mental speed, particularly spontaneous immediate use of very precise descriptive language. I now struggle far too long with the right concept in mind but no way to come up with the words for it until much later. As a self-employed person especially, the premature loss of my job skills has had a major impact on my life.

As part of the qualification process for a clinical trial in 2006 I had a brain MRI, which showed a small spot "normal for aging". I have not had a repeat brain MRI since then but with the continuing loss of facility, written clinical documentation of the episode I had during chemo seems possibly relevant to me as a patient although obviously it was not meaningful to my caregivers.

I also wonder what could have been the outcome for me at the time of the incident had I been driving or operating other machinery and suddenly lost my vision, even briefly, maybe in the middle of changing lanes in heavy traffic, or not being able to see a child on a bike just ahead? Without clinical documentation of such incidents as mine, it would be very difficult for anyone who has the same problem but at a more critical moment to handle the outcome. Who would believe them?

['lizbeth]

Write a book. About this topic. You are more then qualified and could make a difference.

If not a book, how about articles for popular women's magazines.

AA, you could drive the change we need for cognitive treatment before and during treatment. The rest of us could give input.

I'm also paying financially the cost of being a cancer survivor in the workforce. I need to try and do more with a career, but I am just struggling with this. I'm focusing on adding a 2nd job, but not are as challenging as before cancer.

[lkc Gumby]

Hi ladies thank you all so much for sharing your experiences. It still amazes me that cognitive changes chemo are not just ignored but pretty much dismissed by the majority of the medical community. I was always so grateful to be alive, after my " dire" prognosis I felt a little brain damage was not biggie. After over 9 years I still walk into a room and can't for the life of me remember why. It usually comes to me after I stop and concentrate. I forget family names, when speaking I struggle for words. I researched chemo brain and found a great article, which I managed to send
to my DH. Stored it away safely, and of course, have no idea where it is!
Anyway, I am now faced with an earlier retirement because I am fully aware that my overall ability is impaired; I work as an executive. I do fear that earlier onset of senile dementia is possible. Overall I remain thankful for my restored health. I do think however the medical community should not only acknowledge that this adverse event of chemo, but also push for studies that will ultimately truly scientifically validate us and our symptoms.

[AlaskaAngel]

Thanks, Liz - I learn a lot from your posts. Given enough time I can still write, but I do have much more difficulty now with very concentrated analytical scientific information and being able to retain the exact terminology well enough to be able to discuss it clearly. The value of any insight I have is in large part due to the extended length of time I've had after diagnosis to examine the information everyone provides here, which I think is true for some others like DLaxague as well.

We need carefully documented clinical trials that follow patients from diagnosis through the years.

['lizbeth]

Thanks, I try to post things that help us all learn, even me.

Stop thinking like a scientist, think like a cancer survivor, and a cancer care advocate.

Yes, we need these clinical trials. But we won't get them if we don't work together to popularize the concept.

You can write material that bridges to both the layman, such as us Her2 folks and the general public, and to those with higher levels of scientific education and experience.

Give this some thought. I think that folks like us on the board can make a difference. But not if we don't educate others.

[AlaskaAngel]

Liz,

Like Dlaxague, I just lost a long post after struggling to compose it (*sigh). I know better, and that before posting a long one I should have "copied it", just in case it disappears. I'll try again.

At time of diagnosis and treatment, we are most acutely conscious of the experience and our questions about it, but much of the time we are not sure of our grasp of what is "normal" and what is not.

A major problem is that we tend to believe that our caregivers already know about any difficulties involved and "would have TOLD us" about them, as part of their obligation to us". WE give THEM the benefit of the doubt, and fail to push them to do that part of their job.

There are some here who do speak out about problems that so many suffer with, whether by posting in forums or in more public ways. There are some who actively raise a discussion with their caregivers about the problems they experience. But too many still just sit back, make excuses, and want someone else to do it. Some, like me, find that their caretakers don't even bother to document their concerns when they do talk about them. Some read what others have to say here, but don't bother to post. They rationalize and postpone. They "don't want to seem ungrateful" for the care that they do receive.

Here are some who are speaking out:

Our member, Idelle:

http://www.amazon.com/Your-Brain-Aft...rds=chemobrain

There is now another book cooperatively written also by a physician plus female cowriter,

http://www.amazon.com/ChemoBrain-The...rds=chemobrain


Here is the miserably short list that came up of clinical trials listed on clinicaltrials.gov that are being done, using the quest "breast" and "chemobrain". Probably using "cognitive dysfunction" might bring up even more:

1Active, not recruiting Can Exercise Improve Cancer Associated Cognitive Dysfunction? Condition: Breast CancerIntervention: Behavioral: Exercise

2 Completed Computer-Based Training in Patients With Post-Chemotherapy Cognitive Impairment Conditions: Breast Cancer; Cognitive Symptoms; Memory DisordersIntervention: Device: Computer-based Cognitive Training

3 Recruiting A Multi-modality Imaging Assessment of Chemobrain Condition: CancerIntervention: Procedure: Imaging assessments


Are there any members here who are participants in these trials?

Can anyone who works in the medical field who is familiar with the problems we have help by listing some relevant training sessions specifically designed for training medical providers about our problems, perhaps even some training sessions that actually include patient participation?

A.A.

['lizbeth]

I read Ms. Davidson's book, but I don't remember much of it, sigh.
I've put the Dr's chemo brain on my Amazon wish list.

Yes, exercise significantly improved my cognitive function, for god's sake we don't need an expensive clinical trial to determine that.

Testing before and after chemo should be standard.

Can anyone who works in the medical field who is familiar with the problems we have help by listing some relevant training sessions specifically designed for training medical providers about our problems, perhaps even some training sessions that actually include patient participation?

Sorry AA, but I think God is calling you to address this. At least to get the ball rolling.

Personally I would have been thrilled to have testing before and as follow up after treatment. My confidence is low. I'm not sure what I can do, but I think it is much more then I am doing now. I just need to reframe my outlook and use the talents I have.

Think about it, but don't be annoyed at me for pointing out your great talents, lol.