Being Rare

Sometimes I feel forgotten. My friend Tara wrote a blog a few weeks back that really resonated with me. She wondered how people with rare cancers felt during all the hoopla around breast cancer and the fact that it gets a whole month dedicated to it. 

For me, I am not even close to getting a month; my cancer isn't even on the map. Aggressive Angiomyxoma (AA) – not to be confused with Alcoholics Anonymous – has anywhere from 150 to 250 reported cases depending on which sources you read. When I say reported cases, I mean EVER, IN THE WORLD. Digest that. The chances of me having this are untraceable. For me, the worst things about being rare are: I will never get a month and will likely never even get dedicated research, doctors don’t know what to tell me and often turn to Google – I kid you not, and I don’t look sick so people just have no idea what I’m going through. People can also find a way to empathize with you if you have breast cancer or prostate cancer because their mother, brother’s cousin or friend has had it. But, “Oh, hey I have Aggressive Angiomyxoma, a soft tissue sarcoma,” causes someone to glaze over and give you that I-am-trying-to-be-sympathetic-but-I-don’t-know-what-the-hell-that-weird-thing-you-just-said-is-face. I don’t have a bandwagon to jump on. I have to blaze my own trail, but heck I AM a mother friggin’ trailblazer, right?! I tell my mom and dad all the time just how special I am. :) They got a rare ass gem.

I pride myself on looking fab, even when I have been balling my eyes out right before walking into work. I always say, “When in doubt, look fab.” Yes I walk into work every day with a smile on my face, but am I fighting a big ‘ol battle? Heck yes. Here is a glimpse. One morning I started sobbing because I saw little kids (one was an adorable blonde muffin with pig tails) walking into the day care across the street (and I probably can’t have kids). One morning I was hyperventilating because I am 27 and need to go on bone loss medications. One morning I was coughing to see if I felt a little more pressure in my left butt cheek because I had a weird poop that morning – so was Frank (the tumor) bigger? One morning, probably about a year ago, I finally got myself to say the words I have cancer in my head – took about two years. Would anyone know about these mornings (aside from my family who I likely called sobbing)? NOPE.

Rare on my friend, rare on…