That’s it. No more hickey, man-hick or hickster to speak of. My hickman is out. And I have two measly stitches on my chest to prove it.
Without tubes coming out of my body, I’m back to the “I wonder why she’s bald?” stage I remember seven years ago. I’ve noticed some sympathy nods on the sidewalk replaced by the “I bet she really hates her parents” or “pink hair dying gone wrong?” wonderment.
I welcome the childish problems some now assume I have. Much better than assuming I had cancer three times. People think you should have the wisdom of a 60 year-old after experience like that. But all I want to talk about is what color wig best makes a Katy Perry costume and researching the weirdest Googled terms that have led internet surfers to my blog. By the way, they are, in no particular order:
- Who is the redhead in the 5 hour energy commercial
- I’ve done a lot of crazy things in my life but i’ve never stuck my head into a hornet’s nest before
- Can people get hurt doing too many belly smackers
- Can you sue someone for making fun of a redhead
- What to wear to outdoor beer festival
- Prince Harry chest
- Male jean shorts
- Playing dodgeball with one arm
- When you donate something is it spelled donator or donater
- How do I sell an iv pole in Massachusetts
- Fat man with jean shorts with suspenders
- Redneck brother
- Should I tell my anesthesiologist I’m redhead
- Nursing home nuns
- How to make an independent redhead love you
I think that pretty much sums me up. But now I’m seriously skeptical of you all. Good job, Google.
Unfortunately there are too many young adults who have to deal with way more grown-up problems after cancer treatment. I think these are the scariest problems of cancer – being uninsured or underinsured. I have been fortunate to have excellent medical insurance throughout all of my treatment (not to mention a social worker mom with a knack for navigating complicated programs), but I know compared to my peers I’m the exception.
When I was in Washington DC with the American Cancer Society Cancer Action Network (ACS CAN) a few weeks ago, I met a woman my age – let’s call her Amanda – in the most stressful of straits. She had just suffered through stomach cancer. But instead of moving past a disease that had already taken some of the best years of her young-twenties life, she had to worry about the thousands of dollars of medical debt looming over her future.
Young adults often worry about student loans, car payments, or (sadly) credit card debt. But imagine having racked up hundreds of thousands of dollars in medical debt that you acquired through no fault of your own, just so you could keep living. That’s all you have to show for it – something other people get for free. No college degree, no Ford Fusion, no spring break in Cancun.
When I was in college – before the Affordable Care Act (healthcare reform) was introduced – I was acutely aware that I needed to get a job – a good job – as soon as I graduated. Sure, the salary and professional advancement would be nice, but most of all I needed health insurance. Like other childhood cancer survivors, I already had thousands of medical dollars invested in me. I knew that no health insurer would ever take me if they had anything to say about it. The only path to insurance was employment, because that’s unfortunately how our system is set up now.
I had health insurance through my Dad’s plan throughout college so long as I remained a full-time student. No screwing around. But that same health insurance dropped me the day of my graduation. I never figured out how they knew.
It was December 2008, right at the onset of the economic freefall. The job I had secured since the summer before, the job for which I had studied, interned and volunteered so hard for throughout college, backed out from under me. I didn’t even care about the money, about being unemployed. All I could think about was my health insurance. Without it, I was defenseless against cancer.
Finding a job that would offer me benefits was less a battle to put my hard-earned degrees to work before my comparatively measly student loans kicked in than a battle for my future. By this time, I had two cancer diagnoses under my belt. Would a next one occur before I could secure insurance?
Thankfully, after a three-month internship, I landed a job in Washington DC. Things worked out for me. But that’s not true for a lot of young adults.
We have a system set up to help old people with cancer – Medicare – and young people for cancer – SCHIP – but we don’t have a system set up for young, childless adults with cancer. We pour millions into paying for the lifesaving treatment of those 65+ with cancer, but for young adults – those with a whole life ahead of them – we have nothing. When you consider a measure called Potential Years of Life Lost (PYLL) for young adults, this is unconscionable.
This was the case until the Affordable Care Act (ACA) was passed. Before ACA, a young adult with cancer with no private health insurance had few options. Most couldn’t get Medicaid, the government health insurance program for the really poor, because they didn’t meet two of the qualifying requirements. You see, under the pre-ACA rules of Medicaid, you had to be really poor (income at 133% of the federal poverty level – that’s $14,484 a year for an individual or $29,726 for a family of four), and you had to be something else: a child, pregnant, over age 65, disabled, (if you had cancer and qualified as disabled, you were likely terminal), or have breast or cervical cancer (read here why these cancers – and only these cancers – are off the hook).
What’s missing from this group? Childless young adults.
Just out of college, Amanda was poor enough to be on Medicaid. But she didn’t have a second qualifier. She couldn’t get a job that offered health insurance, mostly because she was beginning treatment and was too sick to start working. She survived 10 months of chemotherapy, but today is shackled not only with tremendous medical debt, but also the scarlet letter of a pre-existing condition.
This is why ACA is a godsend for young cancer patients like Amanda and me, and why many laudable groups like ACS CAN support it too. It will keep what happened to Amanda from happening to others thanks to a few very important provisions:
- It allows anyone whose income is 133% of the federal poverty level to qualify for Medicaid. They don’t need two qualifiers to be on it. Unfortunately not all states opted into these new eligibility rules.
- It allows children to stay on their parents’ health plans until age 26.
- It restricts health insurers from denying me coverage because I have a “pre-existing” condition. (Note: This is made possible only through the “individual mandate.” Allowing all people with pre-existing conditions to have healthcare is only possible if everyone – including healthy people – have healthcare, too.)
If these first two provisions were true a few years ago, Amanda could put cancer treatment behind her and contribute to my Katy Perry wig poll, or perhaps spend hours daydreaming of a ridiculous Halloween costume of her own. Instead, she has way bigger problems on her mind.
When people talk about repealing healthcare reform, they risk taking away these protections for young cancer patients like me. That’s the last thing a twenty- or thirty- something with cancer should have to worry about.
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