Happiest Pi day of my life

Brave (2)

I tried to fall back asleep this morning. No go.

It's one week til Wash's memorial.
I'm not doing well.

There are so many things going on all at the same time. I feel I am coming untethered.

I am terrified of trying to write something about him with that level of finality. I was not afford the luxury of denial like others around him were.
This is, certain.
Final.

It breaks what is left of my heart.



The cats keep me company in the bed most nights. Either Aelphie takes her place by my feet, or Leto comes over and sleeps on top of me. The tend to switch off.
I wake up everyday with this sense of "wrong". Something is off. Not as it should be.

I remember how we used to fall asleep together. How we would cuddle. How some nights it would be me holding him until he fell asleep, and a long long time ago, he used to hold me.
I remember the first winter we had together; he was working night-shift and in school. We hardly ever saw each other during the week. Except for 30 minutes in the mornings when he would come home from work, waking me up to the smell of coffee, which he'd always bring me a fresh cup.
He'd climb into bed and for 30 minutes the world did not exist. It was just us. Our time.
I miss the spot I'd kiss behind his ear, right above his neck.
I miss his smell. I miss that so much.
I miss his comfort.

I've had people, strangers and friends tell me how "brave" I've been. I thank them, but I don't understand it at all.
Is it really "brave" when there is only one direction to go? One way to move?
I have to go on, because what else can I really do? I don't see other choices, options.


I am happy to have friends coming in to help me say "goodbye" to him.
I know that lives don't stop. Well, only mine, and to a literal degree, him.

I miss the normalcy.
I miss Family Tuesday Dinners. Those started long before Wash, and it was the one day a week I knew I could see someone who knew my name, who would hug me, where I could just be me.
Those stopped.
I can understand. It's painful. Too busy. Out of town.

I am left though, with this feeling of being attached to nothing. I feel this greater distance with my own family than I have ever known.
Quite like a balloon. I had been tied for so many years, able to float out a bit, and now, un-cut, I am loose. I am going higher and farther than ever before. Than I ever imagined there to be.
The problem though, is the inevitable.
Balloons don't stay up forever. We all know.
Eventually, they pop. They burst, high and in a different place.

More and more I keep wondering why I am still here, in this place. What besides him was keeping me here?

I wonder if this is temporary, or if I have lost hope for Arizona?


I am scared for another reason. Well, many. I've been scared a long time, it's just easier to ignore the fears when there is someone else who needs comfort.


I wish I had known how few choices I would have had, before.
This will by my first Hannukah alone. My parents leave again the day after Wash's service.
At this point, I no longer even see a point in putting up my yearly little tree. I love the lights, but, it feels like I already know I'll be alone at the end of the month.

This is part of it. Everyone moves on. It's been almost 3 months! I mean, sure, he was my husband and the person I was intending to spend my life with, have children with, move with, be happy with, and my best friend. But, no, yeah, under 3 months is fine. Move on. Do we just stop saying his name next year?
I really am upset no one gave me this time-table for "acceptable" grief ahead of time.
I'm still back in the days of Judith Martin, apparently.
I'm guessing since this 'new' timeline for grief is something I'm really not familiar with; being of the impression I could go at my own emotional speed, could someone send me a link?

That last part was a bit sarcastic.

I cried myself to sleep this morning trying so hard to remember if I held him til he fell asleep that Saturday night. I cannot remember. I know I was with him, I was next to him, but I can't even remember if I held him.

I am scared of next week. I'm scared of who might show up. I'm scared my anger towards some people and how they acted towards Wash will not have passed fully if I see them. I'm scared that I cannot yet say that,
"I forgive you for hurting him so much while he was dying."
I was hurt too, to be sure. In a heinous and vicious way. But, people have hated me for a long time. I'm kind of used to it.
I know what was done to him, though.
I know exactly how many nights he cried himself to sleep over this.
I know how many tears, how much pain, and worse, how he could not even understand it. Part of that was the cancer, but a bigger part was just the shock and the pain of who it was coming from.

So much pain and sadness.

How do I say good-bye to my best friend?
The person I loved heart, body, mind, past and future.
I wish, I wish I knew.

Breaking Silence

I feel a need for honesty; though my friends know with me that is never really a problem.

Yesterday my husband's family had a memorial service in his name.
I did not attend.
Technically yes, I was invited; when my mail/invitation came Saturday AFTER the service in a different State was over.

I am Wash's next of kin, and his executor. I am his widow.
I heard him every day for 3 years describe in great detail his ideal Memorial Service.
I am working hard to make that happen for him on December 8, 2012, again, in the Winter, as he requested before his death.

I am truly sorry to those who may have been deceived by others, but he did want and had Willed me to take control of the details.

The love of my life, my soulmate, my husband died less than 6 weeks ago.

Please keep it civil. I will be moderating comments on this post.

Wash had asked me not to write about his parents' or his issues with them until after his death.

I complied. 

Bilbo's hiding from the ProudFoots'

So much stress and drama for days.

Tears.

Late night Hospice visits from nurses.

Thankfully Andy* and Lynn* have been around a TON this past week, outside their own stuff to help both of us. Errands, movies, laughs, from the little to the big. It's vital to have those friends who will be there for you. Like making a commitment to Wash and then keeping it. For months/years. He needs that in his life (outside just me) and at least we have close friends who can fill that need.

Same with being respected. A patient says, "I can't do this", it's best not to question. Unless you are the patients' doctor.

I've met some awesome Hospice workers this week. I'm very thankful for that.

Wash has asked me to keep specific things out of public for right now.

I'm glad for friends at times like these.

//

*Not their real names

DAWN works

Yesterday Aelphie got into something NASTY- and had this mixture of sticky tar/gummy stuff on her back paw. I tried to clean it last night, was unable and had to leave her in solitary confinement until this morning.

She got a bath with DAWN soap at the advice of my friends and fellow pet owners, and wonders, it worked to get that gunk right out!

Though, it left a very very very angry and apple-smelling kitty for me.

I'm wondering where and when she will RagePoop.

Wash is talking this morning with the Hospice Chaplain, this time his "regular" one he's had since Jan. He likes her. I do too.

I'm not ready for him to die, for him to kill himself. I'm really not sure if he is, if he understands fully what he asks. Maybe, though, he does.

He doesn't want to exist in a world where he cannot communicate or create. He NEEDS to create to want to live. I think that part is fading, but not all gone. I think he wouldn't panic so much if it was already gone, I think though he's lost enough that even he now cannot hide from the facts around him.

His memory. That is the hardest for me. I truly dread the day when he doesn't recognize me at all- so far the very bad days he is just confused because the Tashi he expects to see is the one from 2009 and I'm very much not her anymore, physically or emotionally.

He comes and goes. He can have a few good hours, where he knows who he is, he remembers things, even tries to recite Shakespeare.

The rest of the time though, I'm asking him to repeat himself, because his language is slipping. He slurs a lot of words, mixes them up, or skips over half the conversation out loud. He's talking to me (in his head) but nothing is coming out. This often happens if he's trying to share something he read or saw on TV.

When he wants to, he can "put on his show" for 30 mins or so and seem fairly normal. Sometimes his voice is too loud and he's unaware, or he has a lot of random points to make, but he can pull off "his" normal; sort of.

He did speak to his father this past Sunday, which I'm happy for. However, he wants to avoid completely the issues with his parents and family, he doesn't want to address it, talk about it, make any decisions... which comes back on me. Unhappily.

He's getting some sleep at night, thankfully his lab results came back neg for a new infection. But, he's not going longer than about 4 hours now without waking up for some reason. Void, an itch, he's cold, leg spasms, he's suddenly awake....

Mostly it's the memory. Half the time, he can't stand to be in another room away from me, half the time I'm the "bad guy" when I don't let him act like a spoiled 5 year old "Have so many Oreos at 12pm you barf? Sure!"

It's one day at a time. It's watching this cancer take him away, further and further, day by day.

Finding the energy and memories of my own to remember why I do this, why we fell in love.

It's 1pm. Been a long day already.

-The Chaplain is having him call his parents once a week as a "homework" assignment. Maybe that will work better. I have to have hope about something.

When there's someone by your side to sing along

I have not been feeling my best lately and putting off taking care of myself. People I value have pointed out just how stupid that is, as well as avoiding the doctor, so I sucked up my issues and called.

I'm hoping to get some answers and some help.

Some short, but good bits today.

Tuesday sadly Shepherd's pie was cancelled as there was a bug going around my stepdad was not feeling great. So, my mum came over to our place instead, we grabbed Tacos for Tuesday dinner and the three of us enjoyed watching "The Muppets". My mum started out hushing at me but by the end was singing all the songs out loud with Wash and me. It was a really sweet and happy night and memories for all of us, I feel.

A little later on just after we had finished the second episode of "Texas Ranch House" the power for our entire block went out. I'm still trying to figure out if that is ironic. I just grabbed some candles, Wash went to sleep with a few extra blankets, and I stayed up and read for a couple hours until the power reset. Then I turned in.

Wednesday I really was not feeling that great myself, and Wash really just needed to *write*, so he just took the computer over for the day. He finished his short story a while ago and has been doing his best to get some help to really edit it and make it into a nice product. I'm proud of his hard work and how he has been able to re-focus his grief of losing his ability to be an architect, into something else; writing fantasy/fiction and illustrating. Some days he can work for a few hours with great focus, but most of the time his projects lay undisturbed until I remind him or something happens to inspire his creativity. Brain cancer and injuries are so odd; certain predictabilities, and other flat out deficiencies. He cannot remember to brush his teeth, or even eat on a daily basis, but he can still write a 20 page short story. I am constantly amazed by how much of "him" remains, and how much of his personality and even skills have just gone away.

We also had some good insurance news this week; our old horrible case-manager for Wash is off, and our new one is a very respectable woman. Wash had a 2 hour assessment that left him very drained, but we have a few new things to help him now; a new cane he got today and he will have an appointment soon to check his eyes and see if glasses can help him. We're not sure how bad is sight is due to the tumor pressing his optic nerve and/or the brain surgeries, and how much glasses can really help; but I think that if his sight is improved, even if for seeing or just reading it will help. Everything right now I can do to help him still *feel* independent, even if he is not, it helps his Quality of Life. I don't like thinking we are at the point of just audio-books for him, so I hope maybe, just maybe, reading glasses might help him do it himself.

So, my paperwork says that as of April 2012 Wash will be on ALTCS totally and in full effect, and at that point (the social worker explained this from my paperwork) we will STOP having to pay the additional $125.15 and $98.00 Medicare/Medicaid premiums a month. Which I've been having to do out of pocket for about a year or so now. It will be really nice when I can stop being "past due" on all my bills.

Today I am trying to play catch up as best I can, while keeping my eye on him, and feeling gorram awful. I see my doctor this afternoon, and I'm hoping even if there is no pill for my stress levels, she can help with some ideas/referrals, or diet.

In the evening we went over to my mum's house and spent the evening with my older brothers; one who lives around here showed up even though he WAS sick with a cold (he wore a mask the whole night) and my older brother Yoshi had flown in for a night to fly a charter Cactus League team to Japan the next day. We got to share photos, stories, and some laughs. I heard all about my lovely nephew and his adventures (he went "skiing"/sledding for the first time in Feb! He made a life sized 3 foot tall snowman too.) shared some of what was going on with us, and just had a nice night with *my* family around the table. It was wonderful on so many many levels.

Having him live so far away makes things hard, but I'm glad for the technology that allows my mother to speak and teach English to her grandson in Japan, and allows us to share so much so fast. Wash even remembered the last time he had been in town, which was back when he was still getting chemo I think!

I can't think of what else has really been going on, but I've been forgetting things all week.

The good, bad, and great

This will be a short update as it is late, has been a LONG day and I just can't type that much, my wrist has been hurt a bit. More details and photos to come for everything.

The good; Wash's parents and brother came in for Christmas and it was a really pleasant trip. He only had one night of sleepwalking since they have been here and has managed to stay on top of his naps and meds, despite the distractions. He got to spend some good time alone with them, and we all spent some nice time as an extended family doing Christmas and Hanukkah stuff. We did some small gift exchanges and spent time catching up and even getting my backyard and garden sorted out. It was an encouraging trip and I know Wash really enjoyed the time. I know he has been missing his parents and also been really wanting to see his brother, so it was so good for everyone.

The bad; I made a mistake past Friday and went driving without proper ID. We were stopped and I was handcuffed and detained by the police for about an hour. I was only cited for one thing but they towed my car since I did not have proper documents to drive. So my car is in impound. I'll go into details later; I was sober, it was 3 blocks from home, no one was hurt, I was not arrested. I made the mistake to drive the few streets without my purse that night, though I do have very strong negative feelings about being handcuffed as I was not posing any threat or hiding my identification at all, I just did not have the "proper/acceptable" form. I'm going to court tomorrow and with luck will have my car back. This will cost me.

Speaking of cost, also part of the bad got the/Wash's MediCare statement for Sept-Nov. We owe about $550 in costs for doctor visits for him. That's the uninsured part. It's still shocking to me that these are the costs when he is not even on active chemo. These are his mostly "healthy" costs. I've been talking with my mum, I think when he goes on full time Hospice help I'll have no other choice but bankruptcy. Adult pants.

The great; So my In-Laws helped to spend a couple hours in the backyard cleaning and clearing away the crap and making it tidy again. They helped to transport some new plants I bought with my birthday money (Home Depot gift cards, my friends know me) and then I spent more than 3 hours working and planting and transplanting and moving the garden around. There are a bunch of flowers now- I even spotted a hummingbird today! I put in a few more vegetables and seeds, and bulbs, as well as bought a large mature tomato to replace my 3 year old one (destroyed). I also invested again in jasmine and gardenia bushes. The small porch has been cleared and soon we will have our little chairs out to sit and enjoy. I also put in the solar lights I got for my birthday from my mum around, and it looks amazing at night. I cannot wait until the spring.

The other good part, to which I also have photos is that we got some WONDERFUL holiday cheer from www.thinkgeek.com today. Apparently some of the "worker monkeys" read my blog here and know how HUGE geeks Wash and I are (as if his name did not give it away). (Hi friends! You guys rock!) and wanted to do something for us- they did "something" alright.

We got so many wonderful geeky things! New shirts! Chromosome towels! Adipose toys! Mad Scientist building blocks! Toys for my nephew! (he is going to LOVE his food-heavy machines and the jet plane bib, his dad is a pilot) We're going to give the Neuron Plushie to Wash's neurologist when we see her in about 2 weeks. (I bet she will laugh, she has such a sense of humor) I am keeping the Ebola plushie, I frakking admire filovirii, plus it's cute. They also gave us the Blue Sun 'travel' poster SET, which I cannot gorram wait to frame and put up. Nathan Fillion's giant head in our Serenity poster should be jealous. They also sent a treat for the furry legged ones in this house; a 'Cats Attack! Cityscape scratching post. I will have to get a video of Leto attacking it.

We love www.thinkgeek.com and have for years. I've been treating myself and my (step)dad to their toys for years. It's a great company and now I am even more so convinced. Geeks are a special breed and I truly love and admire how they (we) come together as a community. Our season would have been a lot less jolly without their intervention. I cannot even fully articulate yet just how thankful I am to them for this - the gifts and the moments it gave us. These are two happy and so thankful Browncoats.

So, more details and photos to come, but there's the last few days for us. I hope all my Dear Readers have had a safe holiday season, regardless of family, distance, or geekery.