[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