Sunday, April 24, 2011

Falls on Mars

Heading off with Wash today to spend Easter Sunday with a friend and her family. I'm excited for this, apparently her parents have known Wash for years as well but through various situations and reasons I've never met the friends' parents.
... We have a running joke that they don't really believe that I exist- Wash just made me up (as they've never met me in person).
I am excited to validate my existence today.

I will avoid speaking of any bad news for this post/today. Yes, there always is some.

The kitties have been getting along so much better lately. They've taken to trying to groom each other a bit and they have adjusted to being able to sleep on the bed together with us. I think since we got back from our holiday I've been feeling closer to the living things around me; I really feel more like a "family" now- I'm not sure what changed except perhaps myself.

I've been mostly avoiding the news lately; stress is still a trigger for my asthma and now I do have an honest worry that I'll get a panic attack over something which leads to an asthma attack then maybe a heart attack and death for Tashi. I think that's my biggest person physical fear right now.

Wash has been mostly ok. Physically right now he just deals mostly with severe fatigue issues and food issues; he can stay awake for maybe 6 hours if he is not active, if he is up and moving he can keep it for maybe 2-3 hours. We still try to get out of the house a few times a day when he feels up to it. It's been about 5 months without the chemo now so it seems this level for him will probably be permanent.

Right now I'm worrying a lot about money again; my recent medical issues, applications for Wash, rising co-pays and new meds, and then there's the need for A/C in my house- I use fans as best I can but I have to keep the temp low and steady as Wash literally cannot regulate his own body temp. It's a permanent effect from his brain surgery and where he had to have his radiation from the IMRT. He feels "cold" even when he has a fever and is sweating, he cannot tell when he is over-heating.
This is part of my biggest worry- transportation. My/our car is a 1996 Chevy Blazer. On the trip back up from SteamCon the car (Betty) decided that was the time when the Air/Heat/AC would die. So there's that to fix at who knows what cost and there's an old axle issue that needs to be addressed as well, brakes.... you get the idea. I've done the best I can with maintenance but she is an old SUV that takes a lot of gas and a lot of money we don't have to fix. I have no idea what I would do without transportation for him; his hospital is a 20-30 min drive away and we don't even have a full grocery store within walking distance. Not to mention the fact that it is over 100F outside for like, 9 months of the year.
I haven't really talked to Wash about this much. I am not sure what he really thinks/knows/remembers about it. But it is a stress on me and I don't know what to do. Any of my readers know of someone who has a (used/new) working, reliable, and air conditioned 4 door car they might want to give to the caregiver of a 26 year old with brain cancer so he can be safely transported? Any other ideas?

We've mostly been talking, reading, watching movies, and trying to think of a positive or hopeful future where we can have certain pieces of happiness. I think we both know right now it's really just fantasy, but it is one we can share in. When the options are to live always in our lives... fantasy holds a nice calling. Wash likes his movies and certain books for it. I like movies, books, music, and time in the shower to either lose myself or just to pretend of a better "Happily Ever After" ending.
Those don't always exist even in movies anymore though.
And it certainly will not be the end to our story. Ours is a tragedy moving slowly towards the end.

Today though is a nice day to try again, a clean slate, a new chance to come to something better. So I still hope, even in my most down times.

To those who celebrate, Dear Readers Happy Easter.


  1. Hi Tashi,

    The link to your email isn't working for me, sorry to leave a comment - when you get a chance, can you email me (jwendie at gmail)? I want to get you and Wash one of those movable/portable AC units for your house if that would help - but want to work with you on what would work best for your needs. Thanks!

  2. Kindness *abounds* in you, jwendie, (in your 2:33 PM Comment of today)!! In the most down times, kindnesses like yours often help to make it a little bit easier to............ *hope*, as you undoubtedly know!!