This of course, cannot be done long term.
I manage to get the things done that need it, but little else as of late. It's just so trying. Shit you not in seven days I have been to the pharmacy 5 times (and still have one more to go!) and driving all around town... things slip and fall.
I went to campus the other day to bring some lunch to a close friend (grad school, ah the joys) who needed to be fed and it felt so... odd. It's only been a few years since I was in school but my world feels so different now. I don't "feel" like any of my peers.
While we were down there Wash ran into an old classmate who has been aware of what's going on through Wash's facebook. Gave him a hug and said, "Hey man, you'll beat this!"
I hate moments like that. It's not the hope itself, that we have overflowing, but the absolute optimism without the knowledge that no one has "beaten" this. A small handful of people have lived more than 5 years. It will kill him, or lead to a medical complication that does. What hurts is how he needs to be held and loved afterwards because of course there's a part of him that wants to believe this isn't happening. That it will all be ok, the Hollywood ending will happen; smiles and curtain down.
But that's not how it will happen. Doctors, nurses, oncologists, Hospice workers have all made it clear to me (and to some degree Wash) what is to come when the downhill happens.
Right now, he's "stable". Right now he has beaten the statistics and odds. I am petrified at the thought of "how much time" is left. I try to not think about it, but for Wash- he doesn't have that mental pillow anymore. He can't really 'brace' himself when someone is making a "goodwill" gesture that actually hurts.
He wants to travel. He wants to be a father. He wants to live and remember.
I just don't know how to give him what he wants. I don't know how to keep fighting a system that wants us both dead or removed as a "burden". Being the Tashi is hard. Living for two adults is hard. It's an exhausting, unpaid work that makes me long for the tiniest of respite.
What's even "better"? As a married couple last year I brought in just over 3k and he got about 9k in Disability. Around $13,000.00 to live on for a year, for a terminally ill cancer patient and me with chronic medical issues and a state that never paid me unemployment or FMLA leave.
The thing with that which makes it even more of an issue to me- no one in our family asked how I was making ends meet.
I'm glad we are both trying to get things more settled and amenable with our respective families, but there is just such a huge gap in what they see and hear (or want to) and the reality of our every day-to-day lives.
Also, to those of you who are sending us wonderful gifts or cards, please leave a return address (if you feel comfortable). I was raised to send a proper note of appreciation and it's a small thing, but something I enjoy. Though we both enjoy the post/mail, Wash does not really hand-write anymore, so the writing is mine, but the sentiment is from us both.
I shall leave you dear reader then with something to make you smile; Wash asked me off-handed what I wanted for Valentine's Day this year.
"Oh you know me. Fuck flowers. I want time with you."
"Really? You've got that. Movie, dinner, foot rub...?"
"Ok, got it. Want to get me something fantastic for V-Day? Something that will get me down on my knees in thanks?"
"Of course, what?"
"I Want. A. Working. Dishwasher."
Seriously. I will trade away a week a Disney-themed park for a new, working, dishwasher.