Everything Changes - The Guide to Young Adult Cancer

Our bodies are great at remembering hard times: The smell of alcohol in a hospital makes my heart race.  I can’t wear turtlenecks because they remind me of the compression bandage on my throat after my thyroidectomy.

But the flip side is that our bodies can conjure great experiences too.  Here’s one: My body remembers the days when I was a dancer.  Heat and humidity meant my muscles were always flexible, pliable, and ready to go.  I could enter the studio and launch into the fun stuff with little need to warm up.  Now whenever I’m in heat and humidity, I feel totally motivated to do physical exercise.  (Crazy I know.)

Before my second surgery, I requested to speak with a chaplain.  I got a Lutheran minister.  I was born Jewish, but I’m not religious, and don’t believe in god.  Still, I love hospital chaplains.  In fact, if there were such a thing as God in my mind, he/she might appear to me in the form of a hospital chaplain.

He got me to start visualizing what it was like to relax in bed with my husband.  Yes, it sounded kinda trashy and weird coming from a minister, and freaked me out at first.  But I realized that he knew I loved my husband to pieces, it was really hard being in a hospital in a different city than where I live, and he was trying to make me feel at home and relaxed.  He asked me all about my bedroom.  I told him about the pale yellow walls, my mahogany bureau that belonged to my grandma, and how great it is to dive into bed and put my head on my husband’s chest.  It totally worked.  When the chaplain left I didn’t want my husband or family to come back into the room.  I was so peaceful and relaxed I wanted to be alone.

The words visualization and imagery sound so hokey and new agey to me.  But I guess that is what it was.  And it totally worked.

Have you ever used visualization or imagery to coax yourself into a better mental space during illness?  Was it useful?  Did you use the generic peaceful river scene or a place you had actually experienced before?

Many of you have said your favorite part of my book is HollyAnna’s kick ass cancer and river visualization scene read.  Read it in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

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.