I am going to preserve the gray matter so I don't use my daily allowance of brain function before the evaluation.
Plus, I'm trying to put together some of the facts I have from the available research to increase my credibility here. I do have a respectible amount of information to sort through. I think I've already established this is a bit of an issue...... sorting through "stuff" to find the important things. But, I do have "stuff."
I was on a Cancer Care conference call/webinar in mid April with over three thousand people from all over the world listening to three of the most knowledgeable doctors and researchers in the chemobrain arena. When I heard Dr. Tim Ahles (he is a rock star in this field) mention how my brain could completely block out an ENTIRE CONVERSATION and I would have absolutely no recall ability, I displayed what someone once referred to as instant "O" mouth. There is a podcast of the call. It is well worth a listen. It can be downloaded or it can be listened to through the computer.
This was the first time I ever heard that mentioned. A new bit of information, one which totally shocked me was just thrown into the mix. I would forget conversations UNTIL I was reminded, but, once reminded, I did remember. Having an entire conversation gone? Ludicrous! I began to think about all the times my husband would say things like, "you are scaring me" or "we just talked about this last night, don't you remember?" Those comments were never well received. Massive understatement. I was adamant, defiant and damn combative. He would get a sarcastic, downright obnoxious sounding:
"We NEVER had that conversation.....NEVER!"
I owed my husband a HUGE apology. Bigger than learning I could lose entire conversations was the reminder to Never Say Never. And, the biggest lesson of all was an awareness that chaos around me really was not my fault. Thus, the hunt began and as a result, I am heading back to the neuropsychologist today to try to pin down where the weaknesses lie so I can attempt to claw my way back to a BC brain.
I spoke to a doctor in Alaska, yes... ALASKA who was waiting for feedback/clearance/approval on a clinical trail she already completed. I don't remember the details, but I DO remember her clearly telling me "there are blocked or totally broken pathways in your brain." That sounded dire and I do think there is a note somewhere in the mess on my desk to email her in the middle of July. Better do that RIGHT now before I forget for another week!
I located the only textbook (to my knowledge) ever written on the Cognition aspect of cancer treatment. Refused to spend close to $100.00 for something written for medical professionals given the likelihood I would not be able to understand what I was reading. Subsequently, thanks to Amazon, found "other sellers" and got the book for under $25.00 in mint condition. And I do understand it.
And the snippets....
- Breast cancer survivor numbers hover just under 2M and many of the concerns regarding cognition are expressed from within this particular group
- There was a study using functional MRI on identical twins performing the exact same tasks. One was a breast cancer patient (or survivor) and her twin was healthy. Their brains were observed side by side while performing these tasks and while both were able to complete whatever they were doing, the twin who was treated for breast cancer was using far more of her brain to get the job done. Her sister's brain had a little area lighting up while hers looked like the Christmas tree at 30 Rock. There are pictures and I will find them to put the link on the information page.
- That chemo drugs do not typically cross the "blood brain barrier" but that two (if not all three) of the drugs in the CMF cocktail could be causing slow down or total inability for cell regeneration in specific parts of the brain. I'm not McDreamy but that can't be good, can it?
- Hormone suppression drugs like tamoxifen or femara may be making things even worse.
- Age, in and of itself, a definite issue.
- Despite the best suggestions, there is NO KNOWN fix for chemobrain at this point in time.
- Working memory has become a new phrase in my vocabulary and one that has been googled several zillion times over the past few weeks. That is a key component to some of the issues I am experiencing.
I'm laughing at myself as I run out the door. "I'm not a medical doctor but I play one on blogger." But, I don't. And I won't..if I do find things to share, I will share with appropriate links.
Meantime, before I am late, I'm off. Mental gymnastics, Round Two. And yes, my husband was given an honest and humble apology.