Everything Changes - The Guide to Young Adult Cancer

I just got back from a ten-day heavenly trip to Georgia with Shannon: lush palms, Spanish moss, butterflies, lazy boating on a lotus lined river, and my mystery fever (just for a day).

I get mystery fevers every few weeks and have for a long time.  I down Tylenol, drink tons of water, lay low that day and don’t push it the next day.  If I get a little cancer PTSD, I take xanax and snuggle with Shannon.

On vacation, the day after my mystery fever, we visited the gorgeous Savannah-Ogeechee Canal with a 1-mile roundtrip walk. The heat index was 100 (which I actually love - call me crazy), the terrain flat and stunning.  I heard a voice in my head saying with confidence: “Don’t do the walk.  I know my limits…. Blog about this when I get home.”

Knowing my limits is instinctual now, but it wasn’t at the beginning of my cancer ride.  I used to push myself hard, like a poster-child cancer patient who was getting the most out of life. I was like Wafa’a, a lymphoma patient in Chapter 3 of Everything Changes, who was addicted to clubbing.  I didn’t want to feel left out, be home alone, or let cancer get the best of me.

But over time I’ve changed my definition of what the best of me is.  The best of me is not Kairol conquering a hiking trail in the beauty of nature, nor is it me feeling sexy in a great summer outfit, nor dancing my heart out in ballet class.  The best of me is when I can look long and hard in the mirror and just be satisfied with who I am no matter what I am doing or how I am feeling. There are no limits to this “best of me.”  I know, I’ve done this look’n-in-the-mirror as a pasty white ghost in a hospital gown about to swallow 150 millicuries of radiation.  If I can be the best of me in that situation, then I suspect it is fool-proof.

Recognizing the parts of me that are limitless makes it so much easier to accept my limits.  No big hike?  No biggie. I sat on a rocking chair at the ranger station and looked at the sky.   It was pretty lovely.  Ultimately I don’t know if it’s cancer that taught me to know my limits, or if it’s just part of being a young adult who is maturing and happens to have a few tumors in my neck.

Do you have a hard time knowing what your limits are?  Do you push them, respect them, hate them?  Has this changed for you over the course of your illness?

Read more about Wafa’a the cancer clubbing queen 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.

I know I’m smart.  And, that I.Q. tests don’t prove a damn thing.  Still I took a cheesy online I.Q. test three years ago just to prove to myself that I’ve got brains.  There’s lots of talk about how cancer affects our body image, but what about how it impacts our mental and intellectual self-esteem?

Since cancer, my brain has become a sieve.  I feel inadequate at dinner parties when I can’t spit out cool facts from NPR.  I feel silly defending my positions in conversational arguments; I get one point out and the rest disappear. Forget about retaining facts I read in the newspaper, recalling plot lines of books, or being able to follow driving directions or recipes without rereading them 100 times.

I’ve mostly learned to cope with my fear of sounding stupid in front of friends, colleagues, or strangers.  It’s a matter of overcoming my vanity and not caring what other people think. (Do they even notice my mental short- comings or is the flashing neon arrow pointing at my brain just my own baggage?)

What’s harder are the limitations and frustrations my memory presents to me personally. I’ve thought about going to grad school or working on a PhD but my current brain function truly isn’t capable of the work.  Instead, I’ve satiated my intellectual curiosities in more manageable ways, like writing my book Everything Changes.  Organizing and retaining research information for my book was challenging, but it was an independent project that I navigated on my own terms.

I don’t put much stock in beauty, charm, or humor.  Compassion and intelligence have always been what I prize.  So it’s been a struggle making peace with my scattered cancer brain.  There’s some real sadness there for me.  But while my mind feels deficient, I’ve learned how to move beyond feeling like crap about it and started making the most of what I’ve got.  I’m still a stellar creative thinker and believe I’ve still got it going on in the critical thought department.

Next week I’ll write more about my tricks and tips for dealing with brain fog and forgetfulness.  But for now, I’d like to know your experiences.  Have you faced intellectual self-esteem issues as a result of illness?  How do you handle the emotions that go along with it?  We joke a lot about chemo brain in the young adult cancer community, but have you found a place to talk about how challenging cognitive deficits really are?

Enjoy the fruits of my mental labor!  Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.