Tuesday, May 1, 2012

Blog Me MAYbe: The EDJ That Isn't

Today is the first day of Blog Me MAYbe which means it's MAY I tell you about myself day. First, may I tell you that my blogs will likely always be late on the day of, because I'm on the west coast, and I write them in the morning. So there. There's something. I'm a west coaster!

If you read my previous post this week, you'll know that I've been struggling with my drive for writing after a life altering circumstance. What wasn't in that post, is that I really love my Evil Day Job. Which makes it pretty easy to fall into a 50+ work week pattern. Which makes it pretty hard, at times, to find time to write.

But I'm not complaining. I want to talk about what I do in my other non-writing life. I manage a program for adolescents and young adults with cancer.  Okay, so I'm not going to talk a lot about what I do, but rather why I do it, and why it's important.

Most of us write for this age group called "young adult". Which is up to, what? 21? 25? In oncology adolescent and young adult (AYA) is considered 15 to 39. (Yay! I'm still a young adult!) And you probably think to yourself, wow. That sucks to get cancer at that age (at any age, right?). Well here are some super quick facts about AYAs and cancer:
  • 70,000 (or 72,000 depending on which set of data you're looking at) AYAs are diagnosed with cancer each year.
  • That makes AYAs almost 8x more likely to be given a cancer diagnosis than their pediatric counterparts. (think: A lot of money goes to childhood cancer treatment/trials/etc... the AYA crowd is often forgotten)
  • In the last 25 years the 5-year survival rate for AYAs has stayed the same, while rates for older adults and children have had significant increases.
  • AYAs are the most un/under insured group of Americans, and often do not have access to the care they need at the time they need it most. One patient I know needed a bone marrow transplant (about a 2 million dollar procedure) and because he didn't have insurance the hospital told him he would need to put $250,000 down unless he could get insurance. Sometimes it takes weeks or months to get government sponsored insurance inline if you didn't have it before a diagnosis. That's weeks and months without life saving treatment. (talk about rationing health care...)
Aww. I know I probably made everyone either bored or sad. But let me tell you a few pretty awesome things about working with AYAs. They are the most determined, inspirational, amazing people I've ever met. They get dealt the cancer card, and they continue to live their lives and make the best out of it.

So that's my not so EDJ, and why I love it as much as I love writing.  Below are some resources for AYAs, or places to find more information if you're interested, or just want some entertainment.

My Program!
National Cancer Institute
Oncology Youth Connection
Planet Cancer
The SCAR Project
The Movie 50/50


  1. Min,
    It's sad that this age bracket is the "least" recognized. I wish it would be even across the boards. However, by spreading the word perhaps it can help to change things.


    1. Thanks, lady! It is sad indeed. And worse that primary care doctors misdiagnose cancer in AYAs a lot. Every single day, I see a patient that has gone misdiagnosed. They don't misdiagnose children at the same rate, so the more people talk about it and consider it an option for that persistent pain, or lump, or whatever, the more likely it will be come one of the things GPs consider when seeing a patient.

  2. Well my posts may also be out of sync since I live in Europe :D
    Thank you for sharing your story! What you do is wonderful and inspiring! (and trust me definitely not boring to read!)

    1. Thank you! I'm so glad that you liked it. :)

  3. Hi there!

    Fellow MAYbe challenger here, just popping by to say hi (and am your newest follower!)

    Wow, what an amazing EDJ you have. You are so courageous to work with young people who are battling this dreadful disease.

    It's also interesting to read about the US healthcare system in general - I'm an ex-South African currently living in London, so the healthcare system is very different!)

    Can't wait to read more!


    1. Hello & welcome!

      Thank you. I guess I never think of it as courageous. It is more rewarding than I could ever really explain. And our team of health care professionals are amazing to work with.

      Oh yes, the US health care system is a wreck, IMO. My husband very recently spent almost 20 days in a London hospital and it was a completely different experience than what it is here. I truly preferred it, despite the lack of "amenities" like free wifi or movies, etc.

      Again, thanks so much for stopping by and following!!

  4. Holy crap. 70,000 are diagnosed with cancer every year? That's scary. I'm glad to hear that even though they've been dealt an unjust card in life, they're still motivated to fight it. Just curious -- have you read John Green's The Fault in Our Stars? It's on my TBR shelf (mainly because I'm not mentally prepared for it yet), but everyone I know who's read it has said it's beautiful, inspiring and heartbreaking...much like the sound of the kids you work with.

    1. I know. It's a staggering and surprising statistic to most of us. Even though I went to school for public health, I didn't realize until I started researching the patient population for the interview last year.

      I haven't read John Green's The Fault in Our Stars. I have it on my to be read list. I think it's great when popular culture brings light to these issues because it's so hard for us public health people to get our messages out there and heard. This makes it a lot easier and tangible for people. :)

  5. Hey Min,
    Wonderful post with some very stark messages. You and I have spoken at length about the differences in our healthcare systems. It breaks my heart to think of someone being turned away from lifesaving treatment such as a bone marrow transplant simply because they don't have a staggering amount of money to pay for it. This simply would not happen in the UK. I think the people yu work with are very lucky to have such a passionate advocate as you Min, and long may you continue to fight for them. (And get some writing/chilling time as well)

    1. Thanks, lady. :) Yes, we always find our way to the difference in health care delivery models between our home countries. It is stark and revealing. I think the more people hear stories about this kind of thing, the more they will be compelled to think about and consider a single payer system.

      If the worry or main argument is that health care will be rationed, or you'll have to wait... it's time to take a long hard look and listen to the stories where it's plain to see we're already doing that in this system.

      When a 24 year old patient tells me that, if the latest provision in ObamaCare hadn't covered him through his parent's insurance until he was 26, he would have died, it's more than sad, it's crazy. Crazy to think that he could've died because he didn't have insurance.

      The other complaint about ObamaCare is increased taxes. Well, here's a news flash. Those of us lucky enough to have insurance are already paying for the people without it.

      Un/under insured people wait until conditions are so bad that they need to go to the ER and then they have to get admitted which costs more than seeing a GP.----> They can't afford the $100,000 hospital bill (because they couldn't even afford the $100 GP visit in the first place) so they declare bankruptcy, or just throw the bills away. ----->Hospitals eventually right that bill off.----->Which causes them to charge more for services to the payors (people with insurance)----->Then insurance companies have to pay more for each of their insureds.----->They turf that cost on to employers.----->Who turf it on to the workers.----->who are you and me.

      So I have to ask. What's the difference? You pay into an unsustainable system in this round about way, or you pay into a more regulated sustainable system more directly?

      Then everyone has access to primary care and people stop waiting to go to the ER with a curable illness that has become life threatening, saving at least 200% of costs for each person that would have otherwise used the ER as a last resort. In the end, we all save this way, and everyone has the right to see a doctor.

      Ugh. I could go on. :P Clearly. hee hee