Everything Changes - The Guide to Young Adult Cancer

Did you hire a babysitter or use alternative medicine during cancer treatment?  Did you have to work during treatment?  Do you skip doctors appointments?  Have you lived your life larger after cancer by traveling or switching to a new career you love?  The answer to these questions hinges largely on money.  So why the hell do we never talk about money in the cancer community?

As a cancer patient I was damn glad to receive state disability, alternative medicine care at a clinic for low-income women, and pro-bono legal help. I talk openly about these experiences because I wanted people to know these resources exist. But I realize that everyone has different comfort levels in how much they talk about money.

In my travels interviewing young adult cancer patients, I spoke a real mix of people, some of whom were very quiet about cancer and finances. I talked to one woman who kept secret from all her friends that she was receiving government assistance and other forms of financial aide. I met other young adult cancer patients who broadcast loudly through the grapevine their need for money, like Seth who had an art auction and benefit performance to raise rent money and pay  basic living expenses during treatment. (I recently learned about a program called Give Forward that sets up personal web pages so patients can accept cash and credit card donations from friends and family to help with medical needs.)

When I returned to work after treatment I was not living my dreamy life as a writer.  I was working a crappy, low-paying job that left me creatively void.  The only reason I have been able to write Everything Changes and maintain this blog is because I’m frugal as hell (I was in my late 20s before I ever bought a beverage in a coffee shop or purchased a CD!), I didn’t have medical debt - for which I am grateful on a daily basis, and I got married and now have more flexibility as part of a double income household.  (In my book I refer to people like me as the married cancer bitches.)

I have it good.  And know that isn’t everyone’s story.  I often hear the line that if  you wish for something hard enough you can make it happen.  Yeah, well not in this country. Not with this  medical system.  Not with cancer.

How much has money impacted your cancer experience? Have you ever received assistance or would you ask for help from friends or family?  What is the most frugal maneuver you’ve ever made?

For more stories about swinging cancer and money, check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

Being a freak in the dating world, wondering how long our futures will last, wresting with fertility, interrupting our work lives, our school lives.  Young adult cancer patients aren’t the only ones who get to lay claim to this nasty package of dilemmas.

I get incredible emails from patients who have read this blog and my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s. These emails are not just from cancer patients but people who are living with cystic fibrosis, endometriosis, multiple sclerosis, diabetes. Our diseases are so different, but the similarities of our lives are astounding.

Yesterday, on the New York Times Well Blog, Tara Parker Pope had an incredible slide show called Voices of Cystic Fibrosis. Check it out. It reminded me how much I can learn by expanding beyond the little shell of the cancer community.

There are other people out there our own age who get what it means to be a virgin because nobody wants to sleep with the sick girl, or who understand all too well how to tactfully enlighten employers about the Americans with Disabilities Act.

It makes me wonder if we limit ourselves too much by hanging out in the comfy cancer world. A lot of young cancer patients live in small towns where there are no cancer happy hours. So what if you go have a beer with the guy at school who has diabetes? A lot of us are struggling with health insurance or medical debt. So would young adults have more political power to advocate for change if we hooked up with other disease advocacy groups?

Do you read this blog and have a disease that is not cancer?  If you are a cancer patient, have you connected with other young adults who have different diseases?  What was it like?  What do you think about opening up happy hours, support groups, radio shows, and other young adult programming to people who are survivors of diseases other than cancer? Or, am I getting too kumbaya? (I have obsessively been watching the I’d like to buy the world a coke commercial lately).