Monday, January 20, 2014

it's ok,...just write.


I've been drafting this in my head all week and I'm trying now to remember what I wanted to say. I've also lost control of my left arm so I'm one handedly poking at the keyboard. I did buy one of those computer lap desks, so theres that, and that's great!!

It's going to be nap time very soon, but I've always been honest, so I see no reason, I should sugar coat the bad news - the tumor has been growing aggressively and we're out of traditional therapies, so thats bad. I am considering one off label drug that they are trying in a small number of bt (brain tumor) patients.

Pause. Typing one handed feels like playing a familiar instrument wrong.  I don't need a typist because my right hand gracefully sails across the keys - over familiar letters:l,k,j,h and into uncharted:f,d,e. I vainly try to use my left hand, but it's a slo, stumbling poke and slows me down. No left.

Resume. So, the dr told me about this chemo we could try. It's a serious regimen consisting of four rounds every three weeks, with daily shots for the first two weeks of each of the rounds. It also costs $1 million dollars, which is why we need insurance. Well, I guess I'm the million dollar baby because, insurance approved. Now I have to weigh the pros and cons.

Pro: could slow tumor; extend my life. I could help see if this drug will be useful in the future - add to the data.
Con: Might make me miserably sick, and not work, and then being sick would be for nothing- there are less than ten people in the world with bts trying this.

I think this is where things get hard. At some point, I will have to say enough. I'm done. But is that  now?
A lot will depend on my chest ct tomorrow. If the pneumonia isn't improved, I might not even get to decide. We would have to address that.

Recently, two people have commented on all the fun I'm having on FB and in pictures. First, happy to trade - really, dying and relying on your parents, is not "fun." I'm just doing what I would encourage you all to be doing: live. Just live every day to YOUR fullest. In fact, because both your hands work and you haven't fallen three times in two days due to balance issues, YOU should be having more fun. If you're not; you're doing it wrong. If you hate something in your life - change it.

I have two regrets: I wish I'd studied abroad, I wish I'd lived in the sorority house. If I could go back, I'd do most of it exactly the same. The reason I have fun now is my thoughtful friends. So to those that keep me smiling, thank you!!! Two weekends, ago, a bunch of my sisters came to visit. Its not four years its forever. It was amazing to see everyone.


Wow, stop whatever you're doing. Sit on your left hand. Now, Go. I'm pretty impressed I typed this all with just my right  hand… I'm bsically like an olympian at typing.

Whatever you're doing today. Take a minute for me now put you're heart in it and do it better.

with love and thanks,
Emily