Everything Changes - The Guide to Young Adult Cancer

Forget the ball in Time Square.  My favorite part of New Year’s is talking stalk of the past 365 days.   I’m curious about your best and worst of 2009.  A fan of delayed gratification, I’ll save my best for last:

#1 Sucky Times: My worst moments of 2009 were around illness.  But not only mine.  I spent a lot of time in the hospital with a close family member.  It was totally new for me to be a caregiver instead of a patient.  They both suck.

#2 Pissed Off and Outraged: In 2009, my blood boiled over the slanted reporting about the public option, and watching the cancer community totally skirt healthcare reform issues, doing next to nothing to advocate for us.  How are any of us going to answer to our grandchildren about sitting by and watching tens of thousands of cancer patients die each year because of lack of access to care?

#3 Ass Kicking in Congress: My friend Lisa Friedman and I spent a day pounding down the doors of Congress this past spring, meeting with legislative aides, and having a fantastic talk with Kennedy’s folks.  Young adult health care was our focus and we rocked.

#4 Mission Accomplished:  I spent five years researching and writing Everything Changes.  In February it hit the shelves of bookstores throughout the U.S., Canada, Australia, and the UK. I especially loved walking into Barnes and Nobel in Union Square in New York City and seeing it prominently displayed as a special pic read.

#5 Dream Come True: I don’t really have idols -well,  except for Terry Gross. I’ve always dreamed of being a guest on Fresh Air.  I soared with happiness after spending an hour and a half in an NPR studio recording an interview with her about young adult cancer that aired in September.

#6 Everything Changes:  Two weeks ago, I had one of the best check ups out of my entire nine year career as a thyroid cancer patient.  I sometimes have a hard time trusting good news.  (Note to self to write a post about that.)  But this time I have really soaked it up and am incredibly grateful. Though I hope I don’t jinx myself by writing this!

What were your highs and lows of 2009?  Gimme your laundry list.

If you haven’t yet read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s – you don’t have to go to Union Square to get it.  Go to any bookstore or just click here!

I’ve had to live with jobs that were way off my career path just to pay my health insurance.  Heidi Adams, executive director of Planet Cancer, is going to be asking President Obama about this very issue on ABC Primetime tonight live at 10 PM EST.  The program is called “Questions for the President: Prescription for America” (Must see young adult cancer TV.  Go Heidi Go!)

During cancer treatment I lived on disability.  Afterwords I needed a job with health insurance.  In my book Everything Changes, I wrote about my day job working for a non-profit organization that helped ex-offenders. “I sat in church basements with rapists and murderers (a remarkably respectful and nice bunch of guys) teaching résumé writing and feeding them the organization’s line that if you work hard enough, you can achieve anything. These men and I knew this was bullshit, that life’s circumstances don’t necessarily comply with will or effort.”

The job had ups and downs.  The downs: My employer’s insurance agent called me nonstop asking when my cancer would be gone so their healthcare rates would go down.  I worked 40 hours a week, the pay was lousy, and I had no reserve energy to write or choreograph.  For the first time in my life I was utterly non-creative.  So much for living your dreams after cancer, right?

The ups: I had health insurance.  And, the men I taught were pretty cool.  After going through cancer it was great to be surrounded by people who were also struggling to adjust to “normal” life.  They made me feel like less of a freak.  We were good company for each other.  Is it pathetic that ex-cons made me feel normal?  I don’t think so.  We were all just people trying to cope with change.

How has cancer and the need for health coverage impacted your work life?  What jobs have you taken that you would not have otherwise?  What were the ups and downs?  Are you job searching now or returning to work and how are you handling it?