Friday, August 15, 2008

I can't have cancer - I just got my Facebook account!

I was diagnosed with cancer at a young age, 32, and at the time I was a complete and utter anomaly. I am happy to say that although cancer (esp. breast cancer) is still relatively rare in young people, there has been an amazing movement towards recognition of young cancer survivors having a different experience than that of their "normal age for diagnosis" peers. I am also incredibly proud to be someone that participates in that movement, and even more proud of the fact that the Young Survival Coalition (YSC) directly impacted the push for this movement.
Now that I am getting, um . . .slightly on in years I am able to really appreciate what those who are coming after me (i.e. young cancer survivors being diagnosed now) are doing with their energy and passion. One of these people is Heidi Adams - advocacy co-chair of the LIVESTRONG Young Adult Alliance, and founder and executive director of Planet Cancer, a non-profit dedicated to creating a community of young adults with cancer. Heidi is also a 13-year survivor of Ewing's sarcoma and now is the ripe old age of 39 (um - yeah - that is also how old I am!!).
She has written an excellent op-ed piece on the Stand Up 2 Cancer site. In it she describes this experience of being diagnosed young . . . "To put it simply, young adults like me with cancer have fallen through the cracks on every front: scientific, emotional, clinical and financial.
In Dr. Jerome Groopman’s new book, How Doctors Think, he discusses the following mantra, frequently relayed in medical school: “When you hear hoofbeats, look for horses, not zebras.” Well, that’s fine. Unless you’re the zebra.
For starters, to identify the zebra you have to acknowledge that it is, in fact, different from a horse. And in many ways the unique aspects of young adulthood are as obvious as those black-and-white stripes: from emotional needs, developmental stages and biologic differences, to age-specific issues related to access and delivery of care. "
Something I am always asked about is what it is like to go through this . . . and I try to explain that it is nearly impossible to adequately capture how hard it was. As a young person you simply do not have the tools in your coping toolbox. You probably have not had to deal with a major traumatic event, you probably have not had to deal with a major illness, your significant other has probably not had to deal with a close family member beaing incredibly ill . . . you just lack all these very necessary life skills that would otherwise serve to guide you through your daily movements.
And yet - somehow you get through it. You get up every day, you go to treatment, you may go to work . . . hell you even go to the grocery store (you just forget why you went - but that is a subject for another post!). You go on! And at the end you may look back and be a little amazed at yourself.
And you might choose to get involved in all the various activities supporting others like yourself, or raising money for research or programs . . .

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