Friday, July 22, 2011

Two Princes

I was expecting it a little closer to August, but today I celebrate a little bit- in the last year (Aug 2010-now) Wash and I have finally gotten a little of the publicity necessary to survive in Arizona. After he was first refused insurance and then I was as well, it took power and public attention before the insurance company would comply.

I still think that is wrong. I still think health care should be an absolute human right. Why? Because it's frakkin' 2011 already and we are NOT living in a century where one group of humans is "less" than another.
We shouldn't be.

I started this blog back around Nov/Dec of 2009- right after Wash was home from the hospital and when he had started his treatment for GBM. I wanted a place for me- a place to record with all honesty the good, the bad, and the sad that we have to face. When your life is measured in days, everything counts, even the 'bad' days. I wanted to write so that I and Wash could have these memories. So they could be shared and learned from.

So that if the worst happened for another couple newly married and not even 30 they could see that someone had been there and they were not alone.

I have learned with brain cancer, it is such an important feeling, to not feel alone. To feel comforted or supported- without that it is a challenge to find a reason to go on living.

Thank you truly dear Readers- for all 75,003 (Wash wanted to 'make sure' this morning) of you who have stopped by to hear even a part of Wash's (and mine?) story.
Thank you for the comments. Even the bad ones where some imply that Wash did "something" to get/deserve his cancer, thank you. I hope for those it reflects more on the people than an actual real belief that Wash deserves to die, but I still thank all of you who have come by. Thank every one of you who has sent Wash a postcard- he has a book going now of them. Thank you for every person who has donated to us; either with money, time, or by folding cranes last year. I literally could not keep him alive without all of the help.

Wash and I plan on continuing this. There will still be hard days to come, and I do truly hope more days with happy surprises in them too.

Always, thank you Dear Reader. Thank you for helping me.
Thank you for validating my (young? wise?) belief that people are inherently good and kind.
If I truly did not believe it, I don't think I could live on this planet anymore.


Next week will be a busy one for sure. Wash has some follow-up doctors and his standard pre MRI blood series to get done. I also have a 'follow up' to be scheduled this week which hopefully will bring me some good medical news and give me a solid (no, I want no) answer on my possible surgery coming up.
Wash also is doing his grief support, which I can hope might actually help a bit. He got very worked up last week and came to me and said he was ready to get his will down and notarized... and then I'm fairly sure he's now either forgotten that or it get's pushed to his "I'm not dealing with/ready to die so I will forget anything related to my demise" file. This is a pattern with him, part of it does relate to his brain tumor/surgery and how his brain was affected, but part of it comes I believe from his just refusal to actually DEAL with the issues that come from being almost 27 an dying. No, it's not a good or happy situation, but I'd rather he accept the fatality of his cancer so he can ENJOY the (years, fingers crossed) he has left. He can't do that until he accepts his cancer, and really, that's the hard part.
It certainly does not help when some of Wash's close people suggest (well intentioned?) that his giant ass tumor was really a "mistake". No, I'm fairly sure the hospital would make gorram sure before they sunk a million dollars of care onto him.

Some of Wash's xxxxxxx are coming by. I have/had no issue with this. Apparently I've scared xxxxxx so badly by 'refusing' to let Wash see xxxxxx that they don't feel they could even mention this to me personally. (Never refused. Times when I said, 'He's sick he can't do that, no he has cancer, you can't do that...) This caused HUGE amounts of drama this week for me. I don't want to get into it too much here, but really people?
What is up with me having to be more mature than people 3 times my age?!

Apparently I have to be 'patient', 'calm', 'mature', 'forgiving'.
I thought I had done all this already. I thought since I had spoken to xxxxxxx and no one said a gorram word to me everything was hunky-dory. Apparently not.

So, next week will bring... stress for sure. And maybe some adult behaviour where people would just talk to each other instead of playing the passive-aggressive game.

My wish for the next month? A long term goal for Wash to strive to live for. Help paying the $285.67 utility bill (gorram A/C costs- medically mandatory for Wash, but I still have to pay it all out of pocket!). A chance to make some soup/stew on a cooler day. Making more bread. Reading. Raising up some fry (6-9 baby fry in the little tank!!) and me mentally preparing for the students to come back into my city.
Speaking of- I have to share this. If you come across a photo on the Facebook of two teenage girls literally playing INSIDE a shopping cart of a CVS with a frowny-faced Tashi in the background....
Yes I yelled at them. They were acting like 2 year olds playing in a cart made to hold- 2 year olds- and heading straight for the "break your arm lawsuit express" aisle. I said, "Girls! You are not a toddler, get out of that cart and act your age. You are going to hurt yourself or someone."
The CVS ladies behind the Pharm counter gave me a little cheer for this.

I hope we do keep getting your Readership as this continues. I think it is so important for other people to be aware of what a terminal illness in America can do to a family- on more than just a financial level. To see how he is affected, how we both are is important. To see that incurable fatal brain cancer is not something one can "pull a bootstrap" up on. To see that for those who are 25 when they get sick with a terminal illness are usually abandoned by the greater community- too old for Pediatrics but way too young for any "adult" social services. Wash might be a VERY rare case, but he is by no means the only one.

I want people to see our example and be motivated to CHANGE this world. To see the wrong, and want- and do- "right" it.

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