Countdown

Y'all I have NERD-ed it up today!

Spent most of it assembling and painting the hubs' Ork army for Warhammer 40k. We're doing a tourney as a team tomorrow and I'm excited and he's just... beaming. It's good to see him so happy.

1 day to the tourney
2 days to the in-laws in town
3 days until the "family" birthday dinner party and my step-dad's b.day
4 days until his next MRI
5 days til I *should* start Physical rehab
6 days until we make cover for Phoenix New Times magazine
7 days until Wash turns 26.

Last year on my birthday Wash had a 14% chance of making it to his birthday this year alive/with no tumor recurrence.

I'm gonna make this a GREAT week.
:)

Better day

So Wash and I had a little Mad Men watching party tonight. With costumes, pearls, friends, good appetizers, and an awesome new BINGO set for the 4th season. I'm happy to share the template if anyone wants it.
I painted my toenails today as well. The first time in months... maybe a year? It's been all about Wash, I've gone to the wayside.
I felt ... normal enough today to try. I picked some colours and just did it.
Was kind of nice.

Wash's parent's come into town this week for almost a week to see him/us for his birthday. We thought of some things to do, but I'm mostly at a loss. I don't go to work anymore so I will be seeing a lot of them too, or possible less of them and Wash and more alone/me time this week.

Leto gets bigger every day. The cutie.

I'm having issues with my family again though. I love them, but there is a great difference in me asking for help and their interpretation of "help" as "advice from someone who has never been in or understands my situation". Which is not really what I need right now. Telling me to "be more positive" around Wash and to just go and ask a favour of the relative who stole my $50,000 college fund from me.
But, that's crap and I am not thinking of crap today.

Still just thinking of how handsome my Wash looked tonight. My own better personality Don Draper.

Woman, Woe-man, Woah Man

Wanna laugh?

So, I restocked the bath supplies this week and got a new scent of shampoo for myself.
Wash and I are taking a shower, my head is full of lather and to me, it's all nice and fruity.
Wash takes a few sniffs and declares,
"Wow! That smells soooo good! It's just like chicken tortilla soup! Do we have any soup?"

*blink*
I got pomegranate scented shampoo!

And now I'm gonna be paranoid until I finish this giant bottle of it that I'm waking around every day smelling of soup to my husband!

(at least he likes soup)
(/and it's not beef soup...)

Wed the Awful

The best way I can describe it is this (Wed) morning when he woke up he did not have his "Wash" personality. He couldn't remember words, names, things, places etc. He knew sort of who I was but he did not really understand that I am his wife. He could speak but was not always making much sense, and he was just NOT aware of what was going on around him.
It broke my heart a little today when I had to tell him that he IS my husband, and this is who he is (was).

He got a little better as the day got on, but his short term memory is just GONE today. I don't know who he will be when he wakes up tomorrow.

I don't know how to tell his family about this, or if I should.
It's like reverse Sundowning for Altzheimers patients. I'm hoping since he got a little better by the end of the day he might be... back... tomorrow.

I did hear from a old friend from HS though who has offered to afternoon/dinner sit Wash once a week until the fall semester starts. It's not much, but for right now I at least know that I should have 2 hours free next week for me.

I think I have cried all the tears from my body.


I'm afraid.
I am so scared. I fear this more than I dread him dying. The cancer is in his brain. Someday he WILL wake up and not remember me. And it won't come back. It's already starting.

I don't want to lose him yet. Not enough time.

Nerds

Wash: Hey, can I pick what to watch?
Tash (goes into other room): Yea, sure.
Wash: L&O reruns... mumbles...Reality shows....judge shows... oh! HONEY?!
Tashi: What?
Wash: 'Ghostbusters'? Eh?
Tashi: One or two?
Wash: One. This is why I love you.


Also, we are adding a couple of war trukks for his Ork army that we are fielding at the end of the month in a Warhammer 40k tourney.
He said I could help him paint. I asked if I could paint one anyway I wanted?

I'm doing it like the Pussy Wagon. Yellow with purple stripes and letters? Bet'cher arse.
I love me my geeklife.

No help

I just don't know how to cope.
I don't know how to be happy for others.

I don't know how to let go of the pain of my own life.


Another friend is pregnant. And I'm happy for her, the part of me that loves her is so happy she will have this joy.

But the bigger part of me just sobs. Sobs over the unfairness.

I have to watch my husband die.
I have to lose my best friend.
I had to miscarry our child last year.

We will never get pregnant again. I will never be a mother. I will never have an option to adopt, and we cannot afford to spend tens of thousands of dollars upfront for sperm bank help.

The world, life is just so unfair.

I didn't know. I didn't know. I never thought that working around death as my life would be literally my life.

There's just nothing to hold onto after he goes.
I don't know how to deal. I can't make peace.

I am just so hurt, and angry, and confused. Why?
Why when I want a family does that mean I have to watch everything I do and could ever love die? Die fast on me?

I should have 50 more years with him.
I should be able to have children.

I should be able to have a life, to live.


Why?

1:14 am

Times I hate being an adult; I am sick. Fever, swollen tonsils, can't breathe right or sleep and my throat is on fire. I would almost give up my kitten right now for some good vegetarian motzah ball soup (with carrots). Yes, like the kind I grew up with. I'm sick and I'm so tired from taking care of Kevin there's not enough left to take care of Tashi.

Punch-buggy blue

Cancer humour; I find it funny they put out a recall on his chemo, Temodar for "health reasons". Not that it's you know, a poison, or hazardous chemical. Wouldn't want the pills to split open and kill you TOO early! *laughs*

**His is fine, our area was not affected by the recall**

Eliminated

I am really doing my best not to just melt into utter panic and cry over our financial situation.

We were never in a good place to begin with; the small savings we did have was used up when Wash could not work in 09 and then in fall when I couldn't work for a while taking care of him.

I have not had income since the end of April.

He has monthly chemo. And constant medication and needs. And we still have bills to pay. Nothing outrageous. The basics. I even own my own 16 year old SUV. Not a new car or new anything.

It's just so hard to go so long without support. I don't get financial support. I don't get familial support. I don't get emotional support.
How am I supposed to give him a good life, a good end to his life?

Tell me, who among you would like to know that your last days will be spent in your home with no phone, internet, cable tv, new books or music? You have what you own and haven't sold yet a radio and your partner to keep you company.
We don't even do that to men on death row!

But my Wash has to die destitute because I am young, we are poor, he is disabled and dying and since we cannot have a child I won't even be able to get money from SocSec to pay for his funeral.

Is it not enough to be condemned to this life at his age?

I am so mad at life and the world.

SATURDAY; Night

Today, today was not so good. For some reason Wash woke up in the most horrid mood and really just yelled at me for 2 hours when he woke. About everything, and life, and the unfairness of it, and how he's limited now and he's broken etc...
It was hard and it was painful to listen to. His bad days are just filled with the horrors that stalk me as well, and it's so difficult to get him to remember why he wants to live, why he is with me, why he loves me. He gets so frightened of the future and what will happen to me when he is gone. I was mad back because he went off his antidepressants. I'm ok with that as long as he is still getting help to deal with the issues of dying at 26. He hasn't. So, it builds and explodes out at me. Now, when I did this, he insisted that I get help in the form of both medicine and therapy. And I did. And fought for months to keep it. And have to do it all again now that I've been restarted on my own insurance. Point being a very large double standard that he is allowed to dictate my mental state, but I cannot say on his. Point made.

I left for a cool down time and came back so we could talk.

I told him it was unfair to yell at me and make demanding accusations. And that he was placing unfair burdens on me and the bulk of every responsibility is on me; which has led to some issues with his credit and now mine since he forgot to pay the only bill he was responsible for -and asked to be in charge of. He doesn't remember or care about credit. He's dying and won't ever have need of a new car, or new apartment, or house, or loan for college again... but maybe, maybe I will. And since we are married, this shite effects me as well. There are just so many double standards to living and caring for him.

I told him things had to change. I need to feel like a wife again and not just his "memory" something to dictate to and not treat as a person. He has been. I cannot remember the last time he offered to do something for me that was not getting me a glass of water. He doesn't remember. I miss my husband, the guy who would write me cards and draw sketches of our future home. The one who would do nice things for me without being explicitly told. It kind of takes the romance away to have to plan and tell him everything. I'm doing the work anyway of thinking and implementing, why even really bother? It's so much work and I just don't feel rewarded by things anymore. He has been angry that as he has lost his sense of short term memory and ability to do more than one task at a time; and this came out as I'm horrid for being on the laptop and having the tv on at the same time. I get upset that he uses me; instead of setting any of the 5! alarms we have in the bedroom alone when he lies in or takes a nap he always tells me what time to wake him. Small thing yes, but these are constant and do nothing except make me feel less human and more of a "thing"; a tool not a person.

So, we had a good long talk, I cried for another few hours as he really listened to me for the first time in a few weeks.

Then I cuddled with my kitten and slept for 4 hours.

We've also agreed to try and find a grief therapist to help deal with all this. And we both need it.

Sometimes life is unbelievably surreal.