Everything Changes - The Guide to Young Adult Cancer

Do you have an angelic boss who has made accommodations for your illness?  Or, have you been wedged out of your workplace, or cornered into a position where your job is so miserable you want to quit?

ABC News interviewed me today about asking for sick leave and keeping your job. I offered them lots of tips and advice, but they don’t work unless you follow them.  (Duh.)

Lots of us are pals with our co-workers, bosses, and employers.  Some workplaces can feel like home, family, and the center of our social lives.  Sometime patients assume they don’t need to follow the rules because our bosses are supportive people who care about us.  It’s easy vent to them about our medical woes, lean on co-workers for emotional support, and assume our boss will do everything in their power to accommodate our illness.  Some will. And some want to but cannot.

Illness costs employers money.  No matter how kind your company may be, sometimes it’s hard for them to afford the hike in health insurance rates caused by your illness.  Your sick leave might slow a project down costing them more money.  Or maybe they have to spend extra work hours finding and training your replacement.

I’ve met plenty young adults who are shocked when their chummy employer isn’t able to make friendly accommodations or even lets them go.  That’s why I think it is important to avoid sloppy workplace boundaries.  No matter how friendly the environment, I think it’s always best to play by the rules: Be formal, friendly, honest, prepared, concise and orderly about discussing your illness in the workplace.

Were you nervous about disclosing your illness to an employer? How has your employer responded to your illness? Is it consistent with how they treated  you prior to your illness?  Any surprises along the way from supervisors or co-workers?

Read more about tips for navigating workplace issues 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’m a geek. Just the word ‘library’ kind of turns me on. So imagine how enticing it was when I was recently asked to choreograph a site specific dance performance set in what was the circulation desk for the old main branch of the Chicago Public Library. And here’s the kicker…. It is for a festival where all of the work focuses on disabilities.

So the question is do I have a disability if I have cancer?

I think most people with visible physical limitations are immediately categorized as having a disability. (And some of us cancer patients do have scars, amputation, baldness as a visual cue of our disease.) But what about chemo brain, or needing someone to take notes for you because you have neuropathy, or missing work or class for radiation treatments, or having to take frequent bathroom breaks? Do these limitations make us disabled?

Cancer legal advocates fought hard to get cancer and even our long term side effects included in the 2008 addendum to the Americans with Disabilities Act. Wahoo! I say forget the stigma of the label ‘disability’ or if you wanna be politically correct then go for ‘different abilities.’  Young adult cancer survivors spend a lot of time with broken hearts, financial mayhem, and employment barriers because of the ways our bodies live differently with chronic disease.  I’m damn glad when our hardships are recognized, given some rights, and a little bit of performance space.

Do you think cancer is a disability? How do you feel being called ‘disabled’ -does this label help or hinder? If you don’t have cancer, have you ever considered it a disability in others?  The model in the pic has a heart disease that caused the deformation of her arm.  So if she had no arm and cancer, does that change the story?  If she had an arm and cancer does that no longer make her disabled?