Wednesday, December 30, 2009

Chemo brain is a topic that has been trending a lot lately thanks to some new research and a clearer understanding of patients' needs post transplant. When I last saw my post-transplant nurse, Karen, for a biannual followup, she took me through the paces and mentioned a new program being developed in conjunction with the neuropsychology brain trust at MDA. I filed the information away, thinking that I probably wouldn't need to take advantage of it since I was coping with my chemo brain just fine.

Yesterday, I had to admit to myself that things weren't altogether copacetic. It took me over three hours to make dinner. You may wonder what the one thing has to do with the other and what amazing concoction I was attempting. Quiche and sweet potato soup. Eggs and soup. Three hours of activity, none of which was passive.

Chemo brain is something that I've been struggling with for months now. People may smile and joke and say things like, "Blame it on the chemo brain," or "I must have chemo brain by proxy." I can't even smile about it anymore.

It took me three hours to break eggs, peel vegetables, and get things into the oven. When I discussed the situation with Chris, he did his best to reassure me that I'm still the same person I've always been and that I shouldn't be so hard on myself. This is one of the million reasons I love my guy. He was worried that I was beating myself up for not being able to do things that were once second nature.

Trust me, I know I'm still the same Ann. All of my inherent Ann-ness is intact. My personality hasn't really shifted. It's my ability to think that has me confounded.

We've had the chemo brain discussion more than once and I ultimately had to use the one phrase that makes me insane with irritation to end the confusion: You can't understand. I hate this phrase. For me, hearing this leads me to think that a person is copping out of a debate or that I'm failing to adequately explain something.

Imagine walking around in a gelatinous fog 24/7. Now multiply that by 100. I feel like my head is filled with cotton batting. I can't process long tracts of text in a single sitting. It takes me ages to read a single magazine article and I don't always understand what I've read. When I'm trying to hold a conversation, it's not unusual for me to just stop talking mid-sentence without having finished the thought. I substitute words that mean one thing, but sound similar to another. I don't mean homophones, either. Yesterday, I said Scot, when I meant to say stop. I heard stop in my head. I'd intended to say stop. I said Scot instead. Things like that happen with great frequency on a daily basis.

Chris and close friends that I speak to regularly anticipate it happening. They let it pass without comment, which I greatly appreciate. I usually keep my cool and correct myself, or at least slow down long enough to make fewer mistakes.

I can plan things out and make lists to help me keep on track. For instance, I planned dinner yesterday. I had all of my bowls lined up, the spices were all measured, and all of the vegetables I would need were on the counter within easy reach and the utensils were at their stations. It does take me a little longer than most people to get things done because I don't move as quickly as I once did. Every action requires thought. That's not why it took me 3 hours to make a quiche and a pot of soup. It should have taken me an hour, tops.

It took 3 hours because I was trying to multi-task. Rather than cook a quiche, then make soup, I was trying to do both at once so they'd be ready at the same time. It doesn't sound complicated and I'm sure there are some of you who are wondering why I'm droning on at length about it. It's because it's not complicated and therein lies my frustration.

This was the final straw in a long line of similar events. I can no longer do things in a linear progression. What makes perfect sense one minute becomes a complete quagmire the next. I'm not alone in this. I've spoken to other patients who've related similar anecdotes. Mention chemo brain and we all sport similar looks of resigned understanding.

This makes me very worried regarding taking classes at LSU inorder to finish the CM degree. I refuse to let it deter me, but I don't know how to make it stop frustrating me. I accept the fact that I need to learn a new way to learn and that things will no longer come easily to me. I just don't like it.

Tomorrow, I'll contact Karen about setting me up with the neuropsychologists. I may be able to get in to see them during my next checkup in three months. Until then, I'll keep cruising along.

11 comments:

Anonymous said...

Keep yourself mentally active. While I know the chemo cocktail isn't the same and your time course has been longer, my Mom had breast cancer and went through chemotherapy. She's also a physician and kept working in between her chemo sessions. She said the key to staying mentally fit was to constantly push herself mentally. Take your classes and keep reading and reading.

Ronni Gordon said...

I know exactly what you mean. I make dinner the long way and when I'm finally done my daughter says, "What were you doing in there?" I easily get confused. My joke (ha ha) with the kids is, "Are you going to put me away now?" after I do something really spacey. I find myself covering up a lot. I too mix up words. I'm not sure what to do about any of it. I agree you should take your classes. I don't really have anything similar. Good luck!

Nancy said...

Well said. I'm constantly frustrated and can't find words to finish sentences. I know what I want to say and I know there is an exact word for it, but just can't think of it. So many of my sentences are filled in with the meaning of words instead of the precise word... Makes me absolutely crazy!!! It also takes me forever to get things done and I feel as though I may now have ADD or ADHD. I'm constantly distracted and have to retrace my steps to remember what I was originally doing... is that old age? or chemo brain? or both, gads....

I was hoping that my symptoms would have subsided for now, but apparently it's going to take more time or maybe this is just the way it's going to be.

Being an optimist, I just try to make the best of it. It's a perfect excuse for forgetting stuff... People don't rely on me as much to be the walking rolodex. They are learning to look up phone numbers by themselves. I've cut my self some slack from trying to be the perfectionist. It's really a little liberating (but still frustrating) in a way...

Okay, take those classes. I'm trying to help my brain by doing sudoku puzzles... We can do what we can do.... love you lots. You are not alone girl... Happy 2010! Nancy

PJ said...

Ann, you're writing hasn't suffered, that's for sure. And I always find you pithy and coherent when we speak on the phone. Maybe my own neuro issues have something to do with it.

I'm with everyone who's commented--take the courses. You and your chemo brain will do better than most of the other students, I'm sure.

Anonymous said...

Keep moving forward, Ann. Why don't you take an interesting elective or Leisure Course that will be fun to learn. That way you can see how your learning abilities and study habits are without pressuring yourself. And remember, during all this, you taught yourself how to knit so somethings going well up there!

Amanda F.

Anonymous said...

I have no experience with chemo brain, but I have a preterm daughter who is now 7 and has neurological issues similar to the ones you describe. She has processing issues, often substitutes words and has trouble doing things in a "linear progression." Can a neuropsych help pinpoint where some of the difficulties are coming from? That might give a targeted,specific plan on how to tackle classes...? (Again, just projecting based on my experience with my daughter - I realize it may not be applicable to your situation.)

I also wanted just to post some encouragement. I lurk on your blog and have only commented once or twice before, but you and Chris are often in our thoughts.

Have a Happy New Year!

Ronni Gordon said...

P.S.
Hope you didn't mind that I "riffed" on your chemo brain topic.

Ann said...

Ronni, I'm flattered that you linked my post.

Lisa Adams said...

I am sorry you are suffering with this. I also find frustrating when there are no clear answers about when/if it will improve, to what degree. It's a shame we are only at the point of showing that it's "real" and not further in seeing if there is a way to mitigate it. Again, I am here, supporting, with affection and admiration.

Jim said...

Ann,

I completely agree with PJ. Your writing is focused and a great read. I hope your reading comprehension follows soon.

Jim

Steve Smith said...

Hi Ann,

I am going to share with you an idea that I got from helping Maya Chamberlin (4 year old of Indian/Caucasian descent) from Torrance, CA. I was trying to figure out a way to help reach the Indian community here in the U.S. and thought that maybe contacting Indian restaurants and asking them to help would be the best way. So I have contacted almost 380 so far on her behalf (cards just started arriving yesterday). I have already gotten a response from a restaurant in Boston and the owner may have 4 possible (her 2 children and 2 friends 2 children). All are Caucasian + Indian (India) so they are the best possible potential matches for Maya. I am hopeful I will hear from other restaurants as well. You might try the same approach with Vietnamese restaurants in the U.S. I chose those Indian restaurants(where possible) who had a website because I figured they would be the most progressive. If you would like a sample of the card that I sent out to the restaurants, just email me at unclecb@comcast.net with your address and I will get one out for you ASAP. Finding the restaurants is easy. Go to the website www.anywho.com and type in Vietnamese Restaurant and the location you want to look (state for example) and it will bring up a list of them. Good luck and let me know if I can help you in any way. Best Regards, Steve Smith