Everything Changes - The Guide to Young Adult Cancer

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?

I’ve searched the far corners of the young adult cancer world. If pressed to crown a queen, I’d place the tiara firmly on Heidi Adam’s head.  She’s the founding director of Planet Cancer.  When Heidi speaks, people should listen.  So listen up to what she wrote today:

“Yesterday I attended a meeting sponsored by the LIVESTRONG Young Adult Alliance to take a first stab at drafting guidelines or standards for institutions wanting to launch Adolescent/Young Adult Oncology programs. Now I want to ask you: WHAT DO YOU THINK AN AYA PROGRAM ABSOLUTELY HAS TO HAVE TO REALLY MEET THE NEEDS OF YOUNG ADULT PATIENTS? Bring it on-from the smallest detail to the biggest concept, give me your wish list for an AYA program so we can make it happen!”

Thank you Heidi.  My motto as of late is “quit bitching and start thinking.”  Think about where you have been left high and dry by the cancer community or your medical institutions. Translate them into truly useful suggestions for Heidi and leave a comment below. 

What changes need to happen? Where did you want support but did not find it (childcare, financial, health insurance navigation, access to clinical trials, a place to study or work at the hospital, info about fertility and sex)? How could your cancer experience have been made easier? What programs have you participated in or services have you received that were fantastic and you think should be replicated?