I do. Read this book: Your Brain After Chemo: A Practical Guide to Lifting The Fog and Getting Back Your Focus by Dr. Dan Silverman and Idelle Davidson.
The best trick for cancer brain fog is to learn about it and become empowered. Your Brain After Chemo provides copious information on cancer brain fog, how it works, and how to talk to your doctor about it. Written at what seems like a 8th grade level – it’s a super easy read for a fried cancer brain.
“Knowledge is power” sounds cliché, but I felt more in control of my brain after reading this book. Why? Young adult thyroid cancer patients (I’m one) have been shown to complain of memory problems more than any other group of young adult cancer patient, but rarely are we treated with chemo. It was extremely validating to read that memory problems may also be caused by fatigue, depression, anxiety, and sleeplessness. (Hence, I am starting a personal campaign to stop calling it ‘chemo brain’ and start calling it ‘cancer brain fog’.)
Chapter 6 talks about different kinds of concrete brain tasks. It helped me realize there are a plethora of ways in which my brain still functions beautifully. And, it provided more technical concepts for describing the ways in which my brain is on the fritz. This improves my intellectual self-esteem. I now tell myself I have a hard time with verbal memory; much kinder than saying my brain is screwed and I’m an idiot.
The book fell short in a few places: I take with a grain of salt studies with only 24 participants, and there were a bunch cited in this book. (Granted “chemo brain” has been under acknowledged and under researched until now.) The brain food section seemed contradictory and a bit superficial. The book lacks a 411 on our rights and access to assistance in academic and workplace situations due to cancer side effects. This is a big one for young adults. Still, I think Your Brain After Chemo is a great read for any cancer patient.
Here’s my favorite practical tip of the book followed by a few of my own:
* Eliminate scrap paper, write everything down in one notebook instead.
* Use highlighters and take notes when reading anything.
* I call my cell phone and leave messages to myself on my voicemail.
* I use a vintage office mailbox set with 12 compartments next to my front door to sort stuff I normally lose: keys, important papers, plane tickets, my dog’s leash.
Have you ever talked to your doctor about your cancer brain fog? What was their reaction? What ways have you learned to cope? What tricks do you use to help your life go more smoothly with a scattered brain?
If you experience cognitive deficits caused by cancer, they be covered in the workplace under the American’s With Disabilities Act. To find out more, read Everything Changes: The Insider’s Guide To Cancer in Your 20s and 30s.
“Everything Changes is, without doubt, the most forthright, emotionally sophisticated, and plain-old valuable book of its kind I've seen.”
August 6th, 2009 at 2:28 PM
Kairol, I *very*much* prefer ‘cancer brain fog’ to the more commonly named ‘chemo brain.’ My hands-down worst brain fog moments came during radiation, some of which wasn’t accompanied by either infused or oral chemo. ‘Fatigue, depression, anxiety, and sleeplessness’ can all absolutely cause brain fog…I am eight months past my last chemo, and can definitely tell when any or all of those factors are compromising my brain work.
Am now highlighting for myself a note to switch my references to cancer brain fog. Well done!
August 6th, 2009 at 5:46 PM
I have cancer/chemo brain plus menopause brain, lucky me! I did the Brain Fitness Program during chemo and after about two weeks of “computer games” the fog started lifting. I also do crossword puzzles and I’m learning chess and re-learning the clarinet. If you’re not actively using your brain power and pushing it to do more, you are losing it.
In fact, I was just filmed yesterday for a PBS special on “brain plasticity.” You might see my story during a PBS pledge near you!
August 6th, 2009 at 8:34 PM
Dear Kairol,
Many oncologists are now using the term “cancer-related cognitive deficit” to account for the fact that survivors who have not been treated with chemo may suffer these symptoms. I discussed this problem in an essay for oncology professionals I discussed this problem in an essay for oncology professionals: http://tinyurl.com/muvbuh
Let me know if you have any trouble with the link.
With hope, Wendy
August 7th, 2009 at 4:01 AM
I thought the thyroid cancer patient memory problems weren’t going to apply to me. a few days ago I was registering online for a stress management class at one of the hospitals I go to and found that my email was already in use when I tried to set up an account. how the hell could that be?
apparently I set up an account and I have absolutely no memory of doing it. it is highly disturbing to me that I do not remember doing this at all. I am NEVER like that ever ever ever. I always know what happened and where things are. I am going to look into the brain fitness things mentioned in the above comments. it sounds like there might be exercises to move beyond the memory problems, that would be awesome.
August 7th, 2009 at 11:19 AM
We lupies call it “lupus fog”. Same thing - memory loss, not thinking well. Last weekend, I FORGOT my password for my blackberry (after using it 20 times a day for 6 months) and had to lock myself out and have all the data wiped out in order to get back in. So I lost all my address book/contacts which was really a catastrophy. This happened after 2 days of having a friend over from out of town - she had just been laid off and I was listening to her non-stop talk about it for two days. So fatigue and stress affect my memory big time - much more than before.
On managing fog, I try to focus on both prevention and minimizing damage. After my diagnosis I simplified my life so that there would be less tasks to do in my life (physically and mentally). only two bank accounts and credit cards, making payments automatic wherever appossible/comfortable, being selective about social activities etc. This helped me feel much more in control because I felt less overwhelmed with tasks and it freed up a little more space in my brain. Less is dedinitely more.
And on the tasks I do need to do - rather than writing them down on my agenda book (which I often forget to open anyway!)I set up reminders in my blackberry calender so that it looks as though I have a new message popping up. My medication, grocery delivery, bill payment, doc appts etc, and try to do them right away because if I don’t I will FORGET. This applies tasks at work as well. Sometimes easier said than done as I’m often too tired to open my mouth. But procrastination is luxury for me now.
On minimizing damage- after the blackberry lockout incident I backed up all my data and updated the password list with even the simplest ones. At work I also apologize sincerely and honestly if my screwups affect colleagues and try to rectify damage right away. People are quite ok when someone admits mistakes honestly and tries to correct them.
And I forgive myself if I do screw up from the lupus fog. Calm myself down with meditation. If I can’t avoid lupus affecting my cognitive ability at least I won’t beat myself over it.
August 8th, 2009 at 1:44 AM
Love the reminder to not beat yourself up about this. I am living proof that it only makes things worse, and that kindness to yourself does make it better.
Sueanne talked about doing brain games and I wanted to share with you all a link to an article that talks about some research behind this: http://tiny.cc/RDB1v.
I have sleeplessness brain right now after a great Maryland whirlwind: book party, video session with the great Alli Ward, and visit to the Ulman Cancer Fund office. Time for head on the pillow.
August 9th, 2009 at 8:20 PM
For a long time, my closest family members refused to accept my “chemobrain” excuses. But when we’d finally sit down and talk about it, they’d recall just how intelligent and witty I am ‘normally,’ they couldn’t help but begin to accept my brain fog slip-ups!
What I do is play brain games on my Nintendo DS such as Brain Age 1 and 2 (all the games), and another riddle game with the word Professor in the title (see!? I’ve forgotten the name already!). I’ve never been good with riddles but they really have helped trigger parts of my brain that have gone dormant even moreso since I began treatment. When I solve a riddle correctly, it seems to open up other parts of my brain! It’s hard to explain but it feels good.
Also, I force myself to do one Sudoku puzzle a day/night and read at least a chapter of a novel every night before bed. Crosswords, too, help a lot. I’ve found if I have totally forgotten something a friend has told me, If I admit and apologize for forgetting it, that helps a lot. They get used to it after while and it’s not so much of a big deal anymore. Everyone forgets stuff, right?
I write everything down in one journal and I carry it with me no matter where I go, whether to the living room or to the hardware store! I also open up my calendar on my phone and have to plan a specific date with someone instead of just saying, “let’s get together sometime soon.” I need concrete times to work around and plan for. Nobody else seems to mind this.
I enjoyed reading every one else’s ideas about the topic, too! Thanks, everyone!
August 11th, 2009 at 10:33 AM
great tip with the leaving voicemail messages for yourself! i’ll have to start doing that.
August 12th, 2009 at 1:08 PM
Karol, Even though “chemo brain” is catchy, I’m jumping on your band wagon to call it “cancer brain fog.”
A couple patients who commented after Janey Brody’s excellent articles said that their doctors told them they couldn’t have “chemo brain” because the drugs they used weren’t chemo. As the book points out, it’s not just about chemo.
And you’re right that the book would have benefited from the 411 on workplace and education rights after the effects of chemo. Co-author Idelle, who is a good friend, just created a website and will soon start a blog. I’ll bet she’d love to have a “guest post” from you.
August 14th, 2009 at 8:09 PM
Garnet, I love that you carry your journal to the living room. That is hardcore. And Susan, I’d love to connect with Idelle. What a great conversation her book has started here, on the New York Times, and elsewhere. It is a great resources.
September 3rd, 2009 at 2:09 PM
Dear Kairol,
I’d just like to thank you for reviewing our book, “Your Brain After Chemo: A Practical Guide to Lifting the Fog and Getting Back Your Focus.” I very much appreciated your kind words. I’ve noted your comments regarding a 411 on rights and access to assistance in academic and workplace situations due to cancer side effects and you make a very valuable point. I will see how we might include a resource on that in a future version.
I’ve enjoyed everyone’s ideas about alternative words or phrases for “chemo brain.” I like “cancer brain fog” too, because as you say, not everyone who goes through treatment for cancer receives chemo. Yet, there are many people who can directly link their memory and other cognitive issues directly to the chemo they received. So for them, we use the term, “post-chemo brain,” because even though other factors may enter the mix, such as depression, hormonal therapy, the anesthesia from surgery, other medications such as steroids, even regulatory molecules called, cytokines that may cross the blood brain barrier and affect cognition, there’s still quite a bit of evidence that chemo is at least partially responsible for turning the brains of those of us who have had chemo, to mush.
Your blog is wonderful!
Best wishes,
Idelle
Best wishes,
Idelle
http://www.yourbrainafterchemo.com
September 3rd, 2009 at 2:39 PM
Thanks Idelle. Your clear, concise writing gives so much validation and information to those who suffer from chemo brain. Your book is a great asset to the cancer community. Hope to talk to you soon about the possibility of having you on the Stupid Cancer Show. Chemo brain is hard on anyone, but an especially tough beast for young adults and we’d love to hear your thoughts on it.
Best,
Kairol