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Chemo Brain

missyanne's picture
missyanne
Posts: 8
Joined: Jan 2011

I used the search engine but didn't get an list for "Chemo Brain", and I started getting confused going through the posts. I say confused because I am *certain* that there is a post about it somewhere, however, I cannot locate it. So ... ... ...

Brief Summary:
3/15/2010 - 3 dreams in one night that I had cancer
3/23/2010 - visit to gyn, who after exam and u/s was comfortable using the words 'cancer' and 'you have'
4/2/2010 - surgery (hyst, ooph, lynpm nodes, staging, etc) - Uterine stage 3, Ovarian stage 1
4/22/2010 - first chemo day (taxol, carboplatin)
8/5/2010 - 6th (last) chemo day
10/5/2010 - last radiation day

My first 2 doses of chemo produced Chemo Brain in extreme. I went totally aphasic. I felt like a stroke patient (except no physical deficits). I could understand what people were saying to me. I could think. I could not, however, communicate. In the beginning I couldn't make anything but noises come out. Eventually, I could get words to come out. Those words were inappropriate to the conversations and I wasn't able to state my needs or anything as I could not form sentences either. As the chemo went on, it eased up. Eventually, I would receive chemo doses and still speak and form sentences. Although I could speak, not all my words were correct. The words were generally close to the meaning I was trying to get across but they just weren't exactly accurate. An example (that we still laugh about in my circle of family and friends) is ... instead of stating "handicap tag" when referring to my parking tag, what would come out was "retarded sticker." lol

FYI - I've turned 40 yo now. :-)

I went to my surgeon/oncologist yesterday. N E D. WOO HOO!! As always, I went with my list of questions. One of these was ... What about my chemo brain? I am still having confusion and forgetfulness. He informed me that I was 6 months out and it was absolutely NOT chemo brain. I asked, "Well, then, why am I confused and forgetful still?" He said, "It's just you." WTF??!!? (I wouldn't say the words, but I do spew the initials lol). He said he couldn't do anything for me because it wasn't chemo brain anymore and it wasn't related to cancer.

I have researched by talking to cancer patients and surfing the web, etc. I have decided to believe fellow cancer patients (including my cousin-in-law, my boss at work, and others I've met along the way) who tell me that their chemo brain lasted for a year or two before clearing up. I am posting to ask, does anyone have any ideas or 'exercises' to help? I started playing scrabble (which I ABSOLUTELY!!! hate!!!!!) with my sister in Colorado via iPhone app. I have begun a physical exercise program (which I made up because all I've gotten from the 'professionals' was 'just go do' and "listen to your body"), which includes riding a stationary bike daily, walking at the local park 3-4 times a week, and dancing (which I love) as much and as often as possible (which isn't often yet lol).

Even if you don't have any ideas on how I can improve ... ... ... I really need to hear that other chemo patients don't become mentally clear in "6 weeks". My Granny (who I took care of) was Alzheimer's for many years prior to her death. I am concerned about that because of the responses doc's giving me.

123missy
Posts: 26
Joined: Jan 2011

My last chemo before this recurrence was in August and in early February still had remnants of it. Hope this new regimen doesn't bring it back as bad as it was. I still have to reread anything I write and I still don't always get it right.

kikz's picture
kikz
Posts: 1284
Joined: Jun 2010

I had my last chemo on 9/15/2010 and I feel I still have chemo brain. I tell everyone I can't walk and chew gum at the same time. I feel like my thought processes are okay but I just can't do two things at once. If I am doing something and someone asks me a question, I hesitate and usually say, "uh" a couple of times. Then I stop what I am doing and answer the question. I find it amusing at this point but I hope it goes away. Luckily I retired from my job where I was usually doing ten things at once. I firmly believe I could no longer handle my job. I am 63 so at least this happened at a time when I was able to retire with my pension and social security. Hang in there. What else can we do?

Karen

anicca's picture
anicca
Posts: 324
Joined: Dec 2010

I only had mild chemo brain, but it drove me crazy. It was mostly short term memory problems. If I meant to bring 3 things downstairs with me, I would end up making 3 trips. I haven't found anything to improve the condition except time, but what helped me a lot to cope, was to make lists, to "collect" things at one location, and to count the number of things I need to bring with me/shop for/do. For example, if I was going downstairs in the morning, and needed to bring my purse, a book, and a hat, I would try to put each item at my upstairs "collection point" when I thought of it, and then keep the number 3 in my mind until I was ready to go down. Then I at least knew there were 3 things I needed to bring with me, and if they all weren't at the "collection point," I could look around hoping to spot what I needed, or even finally remember it. Also, since you have an iPhone, put EVERYTHING on your calendar with a reminder, and use a Notes app (I like Evernote, which is free and can be synced with Outlook and put in alpha order.) I am still doing this, because if I need to remember to do something 3 days from now (or even tomorrow morning,) I will likely have forgotten it by then.

missyanne's picture
missyanne
Posts: 8
Joined: Jan 2011

I wasn’t sure where to post my question, so I posted on both boards. ☺

Thank you! Thank you!! Thank you!!!!! I sooooo appreciate all the responses. Just hearing that I’m not alone makes the massive difference!!! I have been making lists. Even as I read the messages I had to make notes. LOL. On one hand, I’m humored that I can forget so quickly—within a couple minutes. On the other hand, it is very frustrating when my mom (dad, sister, bff, etc) say, “I told you 2 weeks ago” (or such) and I truly have no recognition of the conversation. Still, because I recognize that I am having these difficulties, I choose to believe those that I love and have trusted during my life. I choose to try and laugh every chance I get—especially at myself. I choose to believe that whether or not I get better, God has the vision of His plan and purpose for me—even though it is my hope that I improve LOL.

@123Missy—My thoughts and prayers will be with you! Stay Strong my Warrior Sistah!!!

@Karen—I was feeling alone because of the doc’s reaction to me. Thankfully a few days have past and I’ve received affirmations that Chemo Brain is real and expected. So I can laugh again. That’s pretty much my standard for not worrying about something since cancer and the related began. “Is it expected?” If so, ‘ok, I can deal with it.’ Perhaps that has something to do with the fact that for a little over a year prior to diagnosis I was very sick and nobody could figure out why. After six months of antibiotics, etc. I walked into my primary care doc’s office and told her that I wasn’t mad at her but that I was “sick and tired or being sick and tired!!” ‘Run the freak tests because I can’t handle this anymore!’ LOL That’s when I finally was found to have contracted Lyme Disease. After healing from that I had several more illnesses over the next 6 months, until the cancer diagnosis. As strange as it may sound, cancer at least explained why I was so sick with different illnesses. Now I just need to know, ‘it’s expected’. ☺

@Anicca—Thankx for the ideas! It’s true, I do keep pen and paper laying together in almost every room of the house. Lol. While I was in chemo, a friend of mine bought me the iPhone. I have been so very grateful for it!! Along the way I did find Evernote. It has been great!! And I use the calendar for everything, too. I have learned, however, to make a papernote for calendar events and only update my calendar from my laptop. I was finding that doing the other way was causing me to schedule multiple events for the same day/time. LOL That is a great idea for the items. I walk into one room forget why I was there. Look around. Walk into another room. Same thing. Make it back to the original room and yell “CRAP!!!” rofl! I’ll have to start trying that hint.

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