I'm not really sure what I was thinking going into the conversation with my oncologist that my brain just isn't right. Had I thought it through, maybe I would have just left the subject matter alone and gone on to attempt to address some of my "other" post-cancer treatment issues. But, as those who are close to me are all too well aware, my brain (or lack thereof) is a constant source of frustration for me- and I do mean constant. I beat myself up daily over my inability to remember something that I most certainly should have remembered, and I get insanely angry with myself when I loose my car in a parking lot, or forget why I've run to the grocery store. Yesterday, I texted the neighbor and asked for what had to have been at least the 25th time, "Is my garage door down?" (God love that kid... there is a special place in Heaven for a neighbor who tolerates such nonsense....) It puzzles me to no end that 10 minutes after pulling out of the driveway- I cannot recall seeing the door go down- and we even had it painted blue to make it more memorable. And these are just the day to day issues that really make me question if perhaps I've got early onset dementia.
So, I decided that as long as I was going to spend $60.00 to see the oncologist, I might as well get something from it- and this time I was not willing to accept the canned "It will get better" response that I usually get. I inquired about this topic right after finishing radiation, and was told that it was way too early for me to expect that my brain would be "normal", and again several months later when I was feeling that my brain was somewhat better, but still not right. Now, more than a year after finishing chemo, I really think it's time to face the cold hard fact: my brain is not normal, and probably never will be again. (I know what you're thinking- it wasn't normal to begin with. And that is a true statement. However, this is something else entirely.)
It's a good thing that I wrote down what she said, because otherwise, the $60.00 would have been wasted. It would seem that recently there has been a tremendous amount of research done on "cognitive impairment" otherwise known as "chemo brain" or "chemo fog" following cancer treatment. Should it make me feel better that a bunch of scientists have a name for a problem that causes me to leave the refrigerator door open for 15 minutes, or the problem that causes me to completely forget what I'm doing? It doesn't make me feel one bit better, because you guessed it- there is no cure. (The story of my life, right?)
Cognitive impairment can last, and last, and last and is extremely common in patients who have had chemotherapy treatment for breast cancer (and a few other kinds of cancer which I did not write down, so as you might have already guessed, I have forgotten), and even more common in patients who received chemo in dense doses, and especially chemo in the taxane family (yep, those both apply to me). Even more common is for patients who have had radiation to the neck, to suffer long term cognitive issues.... yep, that was me too! Unfortunately for me, stress is also a factor. Apparently, the list of things that stress is bad for, just keeps growing. (That is a subject matter for a different day!)
I was on the edge of my chair waiting to hear some good news. I did not want to hear that it has been studied in patients who have complained of the inability to concentrate, learn new things, or even comprehend things that were easily comprehend-able prior to treatment as much as 10 years after treatment had ended. (10 years? Are you friggen' kidding me? I will be so lost in 10 years, I won't even be able to find my way home.) I wanted to hear that there was some magic solution, that there was hope for me- but if there is hope for me, my oncologist is not aware of it. I walked out of there cursing that I could not believe that we had just paid someone to take my brain away.... Really? I want a refund. I might have to figure out a way to tell my husband that we can NEVER move because there is a very good chance that I won't remember doing so, and will be attempting to get into the garage of the old house....
Of course, I came home with my little notebook (yes, the one that goes everywhere I go- when I don't forget it, or lose it) and did some research of my own. I was grasping at straws and looking for some glimmer of hope that someone, somewhere had some miracle solution to my cognitive impairment. I won't bore you all with the details, but I found nothing that made me feel any better about my situation. It does not make me feel better that I'm not alone in this issue (because let's face it, being in the company of a bunch of other people who can't remember anything.... Right?)
So, what does this mean for all of you that are close to me? How does it affect you? Well, that's an excellent question. I might forget your birthday, despite the fact that it's written on my calendar (some days, I forget I have a calendar), and I might start having conversations with you, that I forget that I'm having.... It does not mean that I do not love you to the moon and back... Love is the one thing that I definitely seem to remember. And just in case you're wondering, if I'm not so fond of you, well, that I remember too....
