Tuesday, April 1, 2008

Dealing With My News

When I grow up I want to be a doctor. Or a nurse. Or a social worker. Or a writer. Or a teacher. A high school chem teacher. A high school math teacher. A kindergarten teacher. A preschool teacher. A philanthropist. A big exec at the CF Foundation. A big exec anywhere. Why? Because maybe I can.

I really don't know how to think about my life anymore. What if this is "the cure?" (great band btw). Sure, my pancreas still won't work so I'll still have lots of pills and I'll still be diabetic and there may still be some lung problems because you can't undo the scarring that has happened. But if my lung functions can stay fairly stable for the next couple years, and then I get them better I could... fuck my phone rang and I lost my train of thought. I'm pretty sure I was going to say I could do so many things.

My mind can't even hold all the things that could or would change about my life. For one thing, I could get a job - or finish college. I could live on my own - REALLY live on my own, without my parents supporting me.

Maybe I could even have kids if my lungs are stable.

Thank you to the people who are excited about this with me. I have to note we have to be cautiously thrilled because the first drug looks great - but it's only in phase 2 trials, and my drug (I think it should be named after me. I'm going to from now on call VX809 Carla's Pill)... Carla's Pill is only in phase 1a. Then it moves to 1b and hopefully by the end of 2008 they will be ready to move onto phase 2, which will include CF patients (one of whom better be Carla, or she'll throw a fit - since it IS Carla's Pill and all).

So, best case scenario - I enter a study at the end of this year - my life and my lungs improve because I get the drug, not the placebo. Then they probably take the med away from me (maybe let me be in phase 3, but I don't know how this works - maybe if you like the drug, they let you stay on it... maybe not.) Maybe I have to wait to get more until all the trials are done - if they get done... and omg this could happen before Darin graduates college! I - as in ME, CARLA, could one day graduate college!

If I don't have to deal with getting sick from stress and needing IVs, there is a very real possibility that I could do college - maybe slowly, maybe not, I don't know. I might do it slowly just so I can keep dancing, but I don't know.

I really don't know, and this is the first time that I've EVER felt like there is a chance I might not die much younger than I am supposed to.

Now the question is, do I stop planning my funeral? Nah, anything can happen, and when I go - I want things done MY way. Because it's very me.

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