Sunday, March 27, 2011

The Gamechanger

Yes, it has been a while. I even have a nice list of excuses; was sick, couldn't type, sick...

Mostly perhaps it is my own fears that keep me from writing lately. I have lost my own hard little shell and everything seems to be brighter,stronger,louder, and intolerable for me. Spring is coming and Wash is certainly happy about the sun coming back, but it is not the same for me.

My garden is overgrown with weeds and I just cannot bring myself to really get in to replant. It feels like more of a challenge to just get through the details of every single day. Always so much to remember, to time correctly, to fix when insurance fucks with us.

There has also been some sad news locally with some of the other brain cancer patients that we know. Seems "stable" patients are all getting tumors this spring. Wash is almost at 17 months. I don't know how much more time he really has. He has finally started to talk details of what he wants at his wake with me. I guess that is a good start for us and him.
Planning his 27th birthday party for this summer and his own wake.
That messes with your brain. Even for a normal person, and Wash- he is not normal anymore. To me he never really was. He's just special in a new way to me now.

Some days it has seemed like a dream, good moments and the ability to just forget the pain and tragedy if even for an hour. Now it seems that I cannot get it out of my mind, and the fact is that I, I am not ready at all for this. I am not ready for him to have another tumor. I am not ready to have to fight with him against this again. And even more so than all of that I am petrified and wish I could just hide from the truth that my husband and best friend is dying and some point all too soon he will be gone.

We have a week before we go "on Honeymoon" for a week. Just a small place up in Flagstaff for a week, but I know what the week is supposed to represent. How can you enjoy something with the foreknowledge that it is the last of that thing? I think it is really setting in for me that we will never get our "special" honeymoon in New Zealand [Wash wanted to save to go on our 5th or 10th anniversary] and most likely I will never get to take him to England or Scotland to see where my family came from, or to Ireland which both of us longed to visit.

We can have a honeymoon week, but no talk of a future that is not to be. The child we will never have. Play games, read, walk... try to avoid the issue of brain cancer which is like trying to walk over the Grand Canyon. Sure you can try, but you won't get far.

I don't mean to sound un-thankful. I am. I am so lucky to have had him come back, to have him still able to even remember me, and lucky for the time we have been able to have so far, every day since my 23rd birthday.
It crushes me to think of him gone.
He is my 1:7,000,000,000

I am supposed to be the anchor and here I am lost and trailing away.

I'm fairly sure this week is going to change everything.

7 new scripts for me this week and much pain. We've spent more this week on my health issues than for Wash's! 4 trips to the Pharm.
I'm feeling terrible because I'm spending money on my health not for Wash right now.
How fraked up of a system is that? He and I are both sick, but I have to worry about him because health is seen as a Privilege and not a Human Right.
Seems only certain rich white males get to stay in this State without consequences. How do you know if you're in Arizona? There are a bunch of loud, white, Christian-faithed males telling you to stay and buy guns (if you are also a rich, white male), and everyone else in the state is told to run and leave or just die quickly because tax credits are more important than human life in this state.
Well, more important than poor human lives.

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