Everything Changes - The Guide to Young Adult Cancer

We all need escapes from the insidious world of illness. And I’m about to take a big one. I’m headed out to San Francisco on Monday for a Stupid Cancer book reading and then I’m taking a 9-day vacation. No blogging. (I’ll miss y’all!) No writing. No cancer nothing. I love my work and my daily life, and I love getting a break from it too.

Lucky me that my husband has a kagillion frequent flier miles from work. We’ll be spending time in a cabin stowed away by a fire, napping a ton, and reading to our heart’s content. But I haven’t always been this lucky. There have been many times when I’ve been too sick to travel or could not afford it.  Instead of the luxury of travel, I’d get crafty spending moments around my house or my city that felt like vacations. Here are some of them:

Sipping tea at Julius Meinl coffee shop. Their free cookies and European service help me forget I’m in Chicago.

Sitting at the Garfield Park Conservatory. They have a huge series of greenhouses smack dab in the middle of the city brimming with ferns, greenery, and ponds. Feels downright tropical and it’s free.

Soaking in a bath. I do this so infrequently that when I make it happen, I feel like I’m living someone else’s life.

Escaping to nature. When I was going through treatment in San Francisco I would find beautiful parks, hills, gardens, hiking trails. Even if I didn’t have the energy to walk, just sitting on a bench in the midst of nature was a total departure from my world. (I’ve yet to figure out how to do this in Chicago.)

Becoming another character. I deeply love reading because it allows me to enter an entirely different world and totally tune out. Some of my favorite books are short story collections by Alice Munro and Jump Lahiri.

How do you get a vacation from your life without spending much money or without traveling far? I’m looking for some intelligent fiction to read on my vacation.  Any recommendations?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn how other young adult cancer patients stayed sane during their illness.

I’m taking a vacation from cancer.  And the rest of my life.  (That is why I have some great guest bloggers on this week!)  I’m eating low country boil and sweet potato pie on a slow relaxing Georgia trip with my man.  No computer access at all.  But when I learned that my interview about young adult cancer and health care in the United States aired on the friggin BBC radio, I just had to duck into a library, get online and listen to it!

I hear from so many people all the time who are young with illness and totally screwed by the system.  People think young adults are naive and don’t want health insurance.  Bull.  We just aren’t give much access, we fall through the loops, and it is completely unaffordable.

Listen to MY BBC RADIO INTERVIEW on health insurance and young adult cancer. Click the link and fast forward to minute 13.  Please forward and tweet this widely.  We need stories about the young adult health care crisis to be heard here in the United States, not just in England!

Hope you are all doing well.  Now back to my sweet tea and collection of short stories.

Over and out,
Kairol

PS - If you were interviewed by the BBC about health insurance - what stories would you have to tell them?  Is this story something you could write about concisely and try to get it into your local newspaper as a letter to the editor?  Could you call your representative and tell them about it?  Have you ever done either of these things?

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?

Early on in my five-year research stint on young adult cancer, I learned about the down sides of the American Cancer Society.  They have no direct support services, education, or research targeted to young adult cancer patients.   But let’s not throw the baby out with the bath water.  Here is why I love American Cancer Society anyway.

Check this out:  Young adults are the largest group of underinsured and uninsured adults in the United States.  This plays a huge part in our delayed diagnosis, and is a big reason why young adult cancer survival rates have not budged in 30 years.  Health insurance is one of our biggest barriers to survival, but who in the cancer community is stepping up the plate to talk about this?  Almost nobody but the American Cancer Society’s Cancer Action Network (ACS CAN).

I got a press release from ACS yesterday that calls upon Congress to enact legislation that will ditch evil pre-existing condition exclusions from health insurance. ACS CAN is asking legislators to make sure subsidies are available for cancer patients who can’t afford treatment.  ACS CAN spoke out about improving access to palliative care and so much more.  I get emails daily from young cancer survivors writing about these very issues.

When I was writing a section in my book about how young adult cancer survivors can make a difference, ACS was the only cancer org I found mobilizing to influence long lasting change around access to healthcare.  Only they truly understood that we have to use the power of our voices and votes to change cancer survival rates.  What could be more worthwhile?

Do you support the American Cancer Society?  Have you participated in fundraising efforts or action center?  What other kinds of services have they provided you with during cancer?

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?

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).

Is talking about money just too taboo?  Why in the young adult cancer world do I never ever hear anyone talking about medical debt?  It’s a crying shame because we’ve got plenty of it and it seems that a bit of conversation and education is in order.  Consider these factoids:

* More than 35% of all young adults have problems with medical bills including getting calls from collections agencies, paying off medical debt, or having to seriously alter their life to accommodate for medical expenses.

* Out of every age group in the United States, 18-34 year olds have the most medical debt.

Given these statistics, it seems likely that the numbers are even higher for young cancer survivors because we are racking up mega medical bills.

I’m going to make a series of blog posts about how to avoid and resolve medical debt, information about credit card usage for cancer patients, and where to get good credit counseling.

But before I dive into these issues, I wanted to pass on a suggestion from Joanna Morales, legal guru at the Cancer Legal Resources Center.  She says: Sometimes medical debt is the result of other unresolved medical issues such as unemployment due to discrimination or other issues around disability.  How can you get out of debt if you don’t look at the root of the problem?  Brilliant idea.  Contact the Cancer Legal Resource Center (866-THE-CLRC).  They are amazing and will help you brainstorm around the factors that are contributing to your medical debt.

Do you or have you ever had medical debt?  How often do you think about it and what impact does it make on your life?  Does it change any of the decisions you make about your care?  Is this something you discuss with friends, in cancer support groups, or talk about online?  If not, why not?

I talk and write an awful lot about the loneliness of being single during cancer.  Yep, I’m married now, but I went through four years of cancer singledom before I met Shannon.

Being married means more than having someone to hold you after a horrible day at chemo.  Check out all of the perks afforded to married couples: Spouses get visitation rights, smoother application of  power of attorney, and can get our meds from the pharmacy no questions asked.  Spouses get to share insurance benefits and might even get special tax breaks.  Spouses have the built in support of sharing possessions, expenses, and are often built in caregivers.

I’m damn lucky to get these pluses and feel it is totally jive that single people and unmarried same sex partners don’t.  Here are some resources that, while they are a tiny drop in the bucket, are good ones to check out:

Hospital Visitation Authorization Document from the Human Rights Campaign - Instructs your doctor, care providers and hospital staff about who is allowed and given priority to visit you if you are hospitalized.  This is a great document, but as we have seen in recent news about a lesbian woman who had power of attorney and was still unable to visit her dying partner, these documents don’t always work in every real life situation.

Breast Cancer Recovery Infinite Boundaries Retreat – Special retreat for women who are or have gone through the experience of breast cancer without the support of a spouse, partner or significant other.  They have already held their session for this year, but I’d get on the mailing list so you can find out ASAP about next year’s - it fills up fast!

Are you/ were you single or unmarried during any part of cancer?  What were your biggest challenges?  How did you work around them?  I only mentioned the negatives.  Are there any benefits to being single or unmarried with cancer?

Vote Now: Should I Delete Spaz as A Friend on Facebook?

I’m not trying to go 6th grade on us; I think this is a great topic up for grabs, with a friend who never minds public exposure or controversy (or at least he didn’t 20 years ago; maybe we’ve changed since high school!)

Tuesday night I posted on facebook “Kairol Rosenthal is debating with Shannon about how much money doctors should make.”

Spaz commented on my wall – he’s a high school friend, with whom I used to watch John Hughes movies, attend peace rallies, and kiss in the park.

Spaz wrote “… You used to be into music, movies, activism and all sorts of other things. Is medical stuff and malignant masses really all you are into now? … It’s like people are born again and only talk about Jesus. If this is annoying or rude, delete me as a friend and I’ll understand. Otherwise. Weren’t you married recently?”

Mr. Malignant
Comments went up on my wall defending me, calling him malignant. But Spaz raised a good question that others wouldn’t dare to. Here’s my reply:

Medicine is the central issue of our time; talking about it is activism. Health care impacts the financial status, productivity level, and quality of life of most Americans.

In the last 6 months, I haven’t touched the Arts section of the Times; I used to drink it in. Instead I read about doctors’ pay, pre-existing condition regulations, and a proposal to split FDA in two. These issues profoundly impact on my life, and yours too Spaz.

I get the born again analogy, and could reply, “I have no choice but to talk and think about healthcare. I’ve got cancer.” But that’s bullshit. I have a choice about where my mind goes, and lately I’ve been questioning the direction. Have I had a day in the last three months where I didn’t ruminate on health care? No.

My Bagels and Pajamas
Patients across the country call and email me daily about insurance, getting second opinions, financial resources, and cancer. I love that I, and my book, can help people.

Some days it’s taxing though to be all about cancer, like today when I am just sad and pissed off at the insidious, malignant tumors in my neck. I tell myself to stop the health care chatter: take more walks, watch more ballet on You Tube, write facebook updates about my breakfast or that I’m still in my PJ’s at 1:57 PM.

But who gives a shit about my bagel or PJ’s? Perhaps nobody cares about how much doctors get paid either, but I think we should. We can’t complain about health care if we aren’t educating ourselves and to be part of the solution.

So yes, Spaz, I’m married to Shannon Fisk, an environmental attorney for NRDC. We don’t want kids, love our dog, are total geeks and night owls, and live in Chicago, but wouldn’t mind moving to New York. Last night we climbed into bed, debating if convicted murderers should be allowed to study and practice medicine after serving their sentence. Conversations like this are my passion, just like music, photography, or gardening is for others. I’m damn lucky that I’ve become a healthcare author, and that something I love (and loathe) so much has become my profession.

How would you respond to Spaz? Would you delete him or not? Do you think about your health more than you would like to? Do you discuss health care issues with friends who aren’t young adult cancer survivors?

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?