Tuesday, June 28, 2011

Bunch of Grown-Up Kids

It has been quite the past few days... too emotional to be contained to a single adjective.

Sunday late evening I began to feel not "right"... pain in certain areas that the medically trained Tashi went, "Oh shit, gotta call my doc" kind. So, along with Wash the doc saw me as well on Monday. I have some new pills; though painful right now this might serve me well in the long run. Sadly this is all part of the "have to just wait and see" issue I am currently dealing with. Not that I am being dishonest or hiding, I just don't want to put some things out in my writing until I know (and my doctors) for certain exactly what is going on with me. There are some very probable issues but I still have to wait and go through some more tests before anything is confirmed or ruled out. I am hoping to have some real answers in the next 3 weeks or so.

Right now I am a bit slower than normal, but I still have to be more than 100% as usual. There's never really room for error with me, which does change my perspective and responsibility.

Wash meanwhile did get some good news back with his blood results; some of his med levels were well beyond the "therapeutic" levels so he is being changed a bit with his med schedule but hopefully in just a couple weeks he should be feeling a lot perkier. I'm not as -hopeful- as he is that his fatigue will just "go away", but it is good for him to try and maybe take shorter naps. I'm still worried about him, I always am, but this at least is the best of our situation and with brain cancer I have to be, and am glad to be happy that this is just part of his "new normal" and not something actual cancer-serious related.

I have also been taking my awake time to clean up more around our home and really try and get my papers all organized- or at the very least all located within my file cabinet. Lots of laundry, and even more cleaning now that we have fish. I really am enjoying them all. The maintenance and cleaning, testing the water etc is a bit much but overall it is needed so I see it as just a part of the hobby of enjoying the aquarium. Also Wash has decided to override me and has named the little algae eater we have "Odo" (the otocinclus) . Ha. I really have to appreciate his brain being clever on that. Plus, geeks can mix; Star Trek (DS9) and Firefly....
The awesome reader who sent us Ses 2 of Castle... you rock. That's the season we missed like half the episodes on because Wash was in the hospital or undergoing chemo/radiation. We finally got to see the hallowe'en episode where Castle dresses up as Mal the Space-Pirate. Ha. It's under much better circumstances we get to watch it now, so I enjoy that.
We also will probably be trying to do a local CSTS screening since driving down to Tucson is not a great option.

Today had some true moments of relief. Opened the mail to see a letter from DES stating our SNAP(food 'stamps') benefits will continue (yay! food! eating!) AND... best and most relieving of all was to me from AHCCCS stating that they are going to continue covering me with health insurance.
(sigh of .... )

Honestly for the last few weeks I have been having to think about the reality of me being dropped and perhaps having to pay for a surgery and all follow-up out of pocket. Thankfully I can breathe and know that Wash won't have to try and sell any of his things if I get more ill.
No word back yet on Wash's insurance or his MediCare switch over... now that does worry me a bit. Shall just have to think positive and hope on that one. The sad thing is there has to be a way to make all of this easier, quicker, and less expensive for the patients. I keep trying to think of ideas but I really am not in any place to suggest or even put into action plans. I think a lot about the other people in Arizona going through very similar issues right now. I can't help but do it, living here I do feel abandoned by the people I tried to vote for (the elected ones at least) and their empty words and feignted actions.

I think we as a country will not really have "equal access" until the people in charge change. Joking with Wash about running for office; I'd have no chance I think in actuality, but if somehow it happened, oh the policies I would change! The help that would be ready and freely accessed. More libraries- everywhere. One of the best way to solve poverty is to educate and allow people the options and the freedom to make new and hopefully changing decisions. Not to mention my thoughts on the re-legalization of hemp and taxed recreational cannabis use... that's another time to talk about it.

Really what I wanted to address tonight was the aftermath of the first Brain Tumor/cancer support group we went to this evening.

Wash enjoyed himself. He liked making some new friends, and talking with others about all his issues that people who don't have cancer, or have not dealt with a Traumatic Brain Injury just don't understand. The little details in the everyday routine. He was the longest GBM survivour there tonight (I believe. Going on his info here)

My time was spent with the rest of the caregivers/family/friends in a separate area. It was... odd. The people were all wonderful, I want to be clear on that. The other new people and the ones coming for years, all super. It is my own Asperger brain that leaves me just... uncomfortable around others. I know I probably came across as very unemotional or 'cold'. Rational. I answered questions and responded, but did not really get into much of our history or details. None that were not pertinent to the questions asked at group.
I was also the youngest one there. I'm guessing the next closest in age was someone maybe in their mid 30's to 40's.
It hurt to be so clearly reminded that this disease does not often strike people Wash's age. Most don't live as long as he has either. It feels odd to me to think I am giving advice to people so much older than I am. It has been a long time since I have felt out of place with age and maturity.
When I was young and into my teens I almost always would spend time "hang out" with older people. Teachers, family friends, neighbours etc. There was always this feeling of unease for me, even though I could speak intellectually on the same level there was also this (un)spoken drama about how young I was- though to me age and maturity and intellect are all on different yet sometimes crossing parallels.
Tonight brought some of that back, being surrounded by people older than I, with more "life" but all the same sometimes looking to/at me seemingly hoping I would have the answers that I suppose are searched for for an eternity.

Listening to the other spouses talk about their lives also led me to wonder how many might be better adjusted if they just remembered the perspective of it all. I guess being so young and having our perspective virtually moved for us, it makes me question why those older don't seem to understand the value of time; even if it is not always how you imagined having or spending it.

The last thing I think I discovered this evening, and the one right now I hold onto the most is the idea that I am doing something with my life.
I write now.

I write Non-Fiction. Some people even seem to think I do a fair job of it.
I have always had words running in my head. Writing the 15 page essays and such in high school was easy and often fun for me. I read Non-Fiction all the time. I live in books, in words, in typeset. I had just never considered really that me writing (as often as I can) could be considered - work?job?- maybe a future for me.
Do writers do it for you, Dear Readers? Is is more altruistic and for themselves?

This is what I shall ponder on.


  1. Mal was a Space Cowboy, never a space pirate. Smuggler, brigand and thief, yes, but never a pirate.


  2. I'm so glad you guys liked Castle :) That episode's what got me into the show in the first place.

    Good luck on your medical stuff, and it's good to hear that Wash's news was good.


  3. I write...

    I love that! I think, especially with writing and other very personal pursuits, saying it out loud makes it even more so. I think the positive affirmations in and of themselves can actually make it so. (not sure exactly how, maybe anti-matter attractiveness? lol)

    Sending positive vibes for your test results. Hope you can be chill. hugs.

  4. Hello...

    I dropped in to see what your blog was about after you plugged it in the comments at Whitecoat's Callroom.

    I have read in a very short time what has been years of living for you. I've smiled, I've cried.

    Just wanted to say you are a wonderful writer with a unique voice and perspective. Don't worry about that "out of place" feeling around the "old" people. I think it's normal to feel that. I'm 57 (technically, OLD), and I still feel funny around people with more life, LOL!

    Sending a prayer along for good things to happen for you.