Everything Changes - The Guide to Young Adult Cancer

I spent my first month of cancer trying to weasel my way onto COBRA. (Check out the podcast from my interview on yesterday’s Fresh Air with Terry Gross, where I talk about this and other young adult cancer issues.) One of my tactics was pulling the cancer card with COBRA phone representatives: “I’m 27, I have cancer and no insurance, pity me.” It was life or death and I was shameless.

Pulling the cancer card so early on in my diagnosis initiated me into the world of asking for help from others. And I got pretty good at it. But, most other patients I interviewed in Everything Changes told me that asking for help crushed their pride and amplified their lack of independence. Listening to these other patients, I started feeling guilty over not feeling shameful about asking for help.  Had I spent my whole life as a louse in disguise? Was cancer the ultimate chance for me to be waited on while I ate bon-bons?

Hardly. When I was diagnosed I lived in an isolated studio apartment in a rough neighborhood with no amenities. My laundry was down three steep flights of stairs in a garage that looked like a crime scene from Law and Order. There were no quick trips to the grocery store, no roommates, partner, or next door neighbor asking to pick up prescriptions for me. The only way I could get my needs met was by asking people to go out of their way to help me. There was a familiarity to it all: I had spent my childhood watching my grandmothers shuttle chicken soup across town to whoever was in need.

My second radiation treatment was the height of my helplessness. I was so weak I asked a guy friend to walk me to the bathroom. He had to prop me up on the toilet as I peed. While my extreme illness sucked, there was a small benefit to being humbled in this way: it reminded me that I’m human and I cannot make it alone.

What is it like for you to ask for help from others? Have you ever refused to ask when you really needed it? How do you handle it when people cop out, say no, or don’t show?

For practical resources on how to build and manage a your support system, check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

Listen this week to me on the radio talking about how cancer, and my lack of health insurance, made me into an excellent liar. You can hear it this week online too by visiting the home page for The State We Are In and clicking on “This Week’s Show” next to my picture. Mine is the third story. It is about half way through the show.

A few months ago I got an email from a producer at Radio Netherlands Worldwide. “Do you have any good health insurance woes you’d like to craft into an essay for our international radio program, The State We’re In?”

*Do I?* Are they kidding? What young adult cancer patient in the U.S. doesn’t? The week I was diagnosed with cancer, I also learned that my former employer forgot to submit my COBRA papers and I had no health insurance. Here is where the lying part comes in.

My radio essay includes cancer diagnosis, banana milkshakes, sexual favors, lying to COBRA officials, and James Bond. The producers threw down a crazy techno track to it all and voila…. Have a listen. I hope you like it.

If public radio asked you for a good story about young adult cancer and health insurance woes - what would your story be?

Sexy Librarian
If you’ve been reading my blog or my book you know I’m a total geek for hardcore legal resources and factual information. (One of my alter egos: sexy cancer law librarian.)

Last month, a family member was in the hospital and I was seriously displeased with the administration. I called a meeting and sat down with the CEO of the hospital and his posse and read them a riot act, peppered with a few key nuggets of healthcare legal knowledge. Not only did I get what I wanted but, when I left they all said, “We had no idea you were a lawyer.” My reply “I’m not. I’m a cancer patient.”

My motto is ‘Think, question, and shout when you need to.’ You can do this quite effectively with a little bit of legal knowledge under your belt. So, stop thinking of healthcare law as a nightmare, and start using it to your advantage.

The Stupid Cancer Show
Listen tonight to the Stupid Cancer Show, at 9 PM EST when co-host Matthew Zachary and I will be talking about recent updates to the law that affect young cancer survivors. Our great guests are Joanna Morales, Director of the Cancer Legal Resource Center and Paula Pearlman, Executive Director of the Disability Rights Legal Center.

Do the words “healthcare law” excite you or make you want to run? Have you ever stated your rights or referred to a law in a medical setting? What were the results? What legal questions would you ask Paula and Joanna?

Dude
A few years back my twenty-something co-worker and I were bored stiff. We had already played hooky from work 7 times to go snowboarding, smoked through a five-pound bag of pot we kept stashed with the extra reams of paper in the mailroom, blown our paychecks on iPod paraphernalia, pulled three false fire alarms, filed two fake workplace discrimination claims, and photocopied our asses at least a dozen times.

Staring into our Cup-o-Soups, my co-worker had a brilliant idea: “Why don’t you resign from your position, I’ll forget to submit your COBRA papers to the government, and then you can get diagnosed with cancer without any insurance.” Dude, how novel, that sounds like fun.

Fact Vs. Fiction
‘Young invincibles’ is a favorite term used by insurance companies, and perpetuated by journalists, that describes slacker twenty-somethings in stories like the one above, who chose to forgo insurance even when they could afford it. But the problem is the story above is actually fictional, as is the notion that twenty-somethings are a tribe of well-fed slacker who don’t want to waste their money on insurance.

I don’t snowboard, smoke pot, photocopy my ass, or own an iPod. I did, however, without planning, get diagnosed with cancer the week that my co-worker forgot to submit my COBRA papers, leaving me completely uninsured. Believe me it wasn’t by choice. Believe me health insurance is unaffordable, with or without a pre-existing condition. Believe me, young adults want insurance, we just cannot afford it. ‘Young Invincibles’ are not the norm. Here’s what is the norm:

• 46% of young adults report having medical debt, significantly changing their lives to pay medical bills, or being contacted by collection companies because they are unable to pay medical bills.

• 73% of employed young adult accept health insurance when it is offered to them, only slightly less than the 82% of adults 30 or over.

The Moratorium
So, I’m officially placing a moratorium on the phrase ‘young invincibles’. It appeared both in the New York Times today and on CNN’s website yesterday. I’m taking a vote on what you think the name should be changed to instead:

A. Impoverished kids who get the SCHIP boot when they turn 19
B. Twenty-somethings whose bottom of the career ladder jobs don’t offer benefits and pay next to nothing so they cannot afford the steep costs of health insurance.
C. Undergrad and grad students who are going to school part-time and working part-time and neither offer insurance.
D. All of the above.

Does the term young invincibles piss you off too? How many young adults do you know who do not have health insurance because they choose not to? How many young adults do you know who don’t have health insurance because they cannot afford it or are already in medical debt?