Archive | October, 2011


24 Oct

I got a type-written letter last week from Miss Perfect Match herself, my donor! If you remember, we can’t meet each other until at least a year out from transplant, but we can write heartfelt generic letters back and forth, plump full of non-identifying information. All I know is that she’s a 19 year-old from somewhere in the U.S. I usually work from the Who-What-When-Where-Why, so this foundation-less conversation is quite different for me.

But we do have quite the foundation. She’s my blood, after all.

After I reread her letter for the tenth time, I started Googling recent concert locations for Taylor Swift because she said she had recently been. I thought too hard about her cat’s name, thinking it may have a connection to a local mascot. I felt like my dad trying to track down the flight my bone marrow had arrived on back in May. All an enthralled effort to figure out where she’s from, who she is. But alas, they say “non-identifying” for a reason, and no amount of regression to my Harriet the Spy days will uncover her – until May, at least.

I won’t read you the entire letter – that would be like me reading out loud letters (I wish) I used to find hidden in my locker from my secret admirer. But I can assure you that we are now officially pen pals. She made me a friendship bracelet to seal it.

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No More Scarlet Letters

13 Oct

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:

  1. Who is the redhead in the 5 hour energy commercial
  2. I’ve done a lot of crazy things in my life but i’ve never stuck my head into a hornet’s nest before
  3. Can people get hurt doing too many belly smackers
  4. Can you sue someone for making fun of a redhead
  5. What to wear to outdoor beer festival
  6. Prince Harry chest
  7. Male jean shorts
  8. Playing dodgeball with one arm
  9. When you donate something is it spelled donator or donater
  10. How do I sell an iv pole in Massachusetts
  11. Fat man with jean shorts with suspenders
  12. Redneck brother
  13. Should I tell my anesthesiologist I’m redhead
  14. Nursing home nuns
  15. 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:

  1. 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.
  2. It allows children to stay on their parents’ health plans until age 26.
  3. 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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Back in D.C.

2 Oct

I left D.C. in a nervous, hushed hurry in February when I was diagnosed with MDS. Thankfully my reentry was much more assertive than my departure.

I make a good poster child for the American Cancer Society

At first it felt like I never left. But I soon realized I couldn’t keep up with my old D.C. pace. I was now that girl being brushed past by all the inside-the-beltway in-a-hurry professionals instead of the one who does the brushing by. Also, I didn’t typically have my portrait emblazoned on the National Mall. That’s a new one.

The occasion? The American Cancer Society Cancer Action Network (ACS CAN – the advocacy arm of the American Cancer Society) Leadership Summit & Lobby Day. My doctors weren’t exactly thrilled about the idea of me boarding airplanes and Metro cars with international germs on them (and now as I recover on the couch, I see why), but it was an opportunity I couldn’t pass up.

More than 500 of us swarmed Capitol Hill, meeting with every Senate office and nearly every House office asking legislators to look elsewhere than cancer research and prevention funded by the National Institutes of Health (NIH) and Centers for Disease Prevention and Control (CDC) when they’re looking for places to make budget cuts. And most important to me, we defended the Affordable Care Act (ACA) – the official term for the new healthcare reform law. 

Evidently, I make a pretty good poster child (literally) for the importance of NIH-funded cancer research and was chosen to represent the Midwest (Wisconsin, Minnesota, Iowa and South Dakota). Part of ACS CAN’s new Celebrate with Action campaign is to highlight the “milestones” cancer patients have achieved thanks to cancer research. I wrote more about my Midwest-represent “milestone” in materials used on Capitol Hill:

My Milestone: Because of cancer research, I was able to graduate from college with honors – on time with my peers.

My tumor was a toughie.

A senior in high school, I was unlike all the patients in my pediatric oncology unit at Mayo Clinic because my osteosarcoma was in the middle of my head, taking up my biggest sinus. When the protocol chemotherapies didn’t work, my doctors were left scratching their heads. Typically osteosarcoma is found in the long bones (legs, arms), so an amputation usually does the trick. Well, you can’t really amputate my head. Nor could they completely chisel out the tumor with surgery because there were important things (like my brain) in the way.

This challenge let my doctors get creative. A new kind of radiation treatment at the time – Intensely Modulated Radiation Therapy, or IMRT – hadn’t really been used to treat osteosarcoma before. IMRT allowed my doctors to laser the millions of tiny beams right at my tumor while finessing its way through the web of artery, brain and eye that was in its way.

Since my IMRT and accompanying chemotherapies, my tumor has sat silent, singed in my sinus. My Mayo Clinic doctor later presented his work on my case to the International Society of Pediatric Oncology in Geneva.

I graduated high school with my class and finished chemotherapy two weeks before I left for college at the University of Minnesota. I was the belle of the bald, lugging my books across the Mississippi to class and packing on a needed more-than Freshman 15. 

That I graduated high school and college on time while spending nearly 200 days in the hospital during my senior year was a triumph, especially for my parents. I was so happy I could do it for them – the parents who, cramped on a cot beside my bed, stayed with me those 200 days, and the parents who never gave up on me.

Today I’m fighting myelodysplastic syndrome (MDS) – an under-researched result of the lifesaving chemotherapy and radiation I received in 2004. If my doctors wouldn’t have caught MDS when they did, it would have ripened into an aggressive, acute leukemia. Doctors still don’t know why some cancer survivors develop second and third malignancies like MDS and the thyroid cancer I had in 2008 and others don’t.

Not only was cancer research lifesaving for me in the beginning, but it is on the MDS end, too. Today I’m enrolled in two studies – one led by my doctor at Mayo Clinic to determine why (treatment? genetics? environmental factors?) some pediatric cancer survivors develop additional malignancies. A second National Institutes of Health (NIH)-funded joint-study by the Minnesota Department of Health, Mayo Clinic and University of Minnesota is examining the causes of MDS. Hopefully these studies will mean fewer future patients experience these not-so-fun side effects of treatment. 

Yesterday was my Day 100 – a big milestone post-bone marrow transplant. Growing new bone marrow, blood and an immune system isn’t easy. My doctors knew what high standards to set when choosing my unrelated donor because of a sleuth of research just in the last decade that has increased to 10 the number of factors to consider when matchmaking.

I hope that my milestone in 10 years is almost unnoticeable – that cancer is behind me. And I hope that patients diagnosed with osteosarcoma or MDS 10 years will have another decade’s worth of solid research that informs their successful treatment and reduces their suffering.

Beyond the fluffy cancer stories, the economic impact of NIH-funded cancer research strikes me. This money doesn’t just sit at the NIH in Maryland – it gets distributed via grants to more than 3,000 universities, medical schools and other research institutions in every single state.

In 2010, NIH research produced $68.035 billion in new economic activity in America and created 487,900 jobs – and these are the quality, skilled jobs America needs. Minnesota alone received $105 million in grants to Mayo Clinic and the University of Minnesota from the National Cancer Institute (NCI – the wing of the NIH that deals just with cancer). Last year 10,237 jobs were created in Minnesota alone by NIH investment.

Capitol Hill Luminaria Ceremony

ACS CAN at the Washington Monument

On the Hill at Night

My Minnesota legislators – Sen. Amy Klobuchar, Sen. Al Franken, and Rep. Tim Walz – were not difficult to convince of the importance of NIH research and other cancer issues. In fact, they have championed cancer issues for years. Unfortunately, this isn’t true for all legislators in the Midwest, nor around the country, so we still have work to do. You can help in your own district by joining ACS CAN and making sure your voice is heard.

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