Saturday, September 29, 2012

Burning Judgement

I finished the painting last night.


I've decided after waking up sore (again, with both cats sleeping ON me) to put off more cleaning today. I don't think it's good physically or emotionally for me today.

I need a day just to rest, to not have to do things "for" Wash still (like paperwork).



I'm listening to bagpipes this morning and thinking of him.

Friday, September 28, 2012

Analogies

Trying to remember to stay in the moment.

I keep expecting to see or hear him. To have him respond to me, only to realize I'm now actually talking to myself.
I miss his wit. Even after the cancer, I miss his wit.

I miss having someone to watch X-Files, Firefly, Freakylinks, Drive, Twin Peaks, Fringe, or Torchwood on a Friday night.
I miss the little routines we had together as a couple. As partners.

Rationally, I know he is not coming back, in his old form, through our front door. Never again.
There's a part of me that still expects him to, though.

Grief is not waves; it is a riptide taking you suddenly to new places you never knew about yet the instinct is to struggle against.








I painted some today; depending on how many more hours I stay up tonight, I might get my first (basic level) paint-by-numbers kit completed. I will post pics when it is done.





I have managed to eat at least one full meal each day. Progress. Cleaning the kitchen with Fraternity help tomorrow. 





I'll try to be more articulate in a new post. This is more just a way for me to vent tonight. 

Wednesday, September 26, 2012

Crying badly this morning missing him a lot. Took both cats crying for food to even get me out of bed. I miss him. 1000 Reminders he is gone

Monday, September 24, 2012

Good news everyone! Das boot has been downgraded to das wooden shoe and though my foot is still broken I have been cleared to start PT!

Lisey's Story

I'm watching Leto sitting across the room on the rocking chair getting quite angry at his tail for being attached to his butt and not complying with his cleaning demands.
Earlier this morning he tackled his sister and held her down while he groomed her head.

They've been needy and clingy lately. I don't like going out for too long of a period not just for my foot, but because I worry it is a stress for them.

Leto is getting better about not just waiting and crying by the door, but he is doing a lot of the things he did with Wash, with me now. Including trying to sleep on me. Which, is a new thing.
Aelphie usually sleeps by my feet or head. Her choice. Leto always prefers the feet/legs (which was cause for concern the other day when I woke to a terribly sore foot quite probably from a 15 lb cat sleeping all night on me) so every so often in the night there is a tussle; I've been getting better sleep in the Library/2nd room but it's a twin bed, not the Queen sized that is in our/(my?) bedroom. Plenty of room for both kitties on the Queen.
On the Twin, with me? Not so much.
We're all adjusting.

I'm doing a bit better mood wise, more stable with the anti-depressants and mood stabilizers. I'm ok taking some "heavy stuff" now that I'm no longer looking after another person, and with my broken right foot, it'll be months still before I'm driving anywhere (sadly, honestly, at least two. More if I need PT since the right side is the one with the bad ACL. I would not be safe behind the wheel. Not to mention my mental distractions...) which is good in that I'm pretty drowsy on it (though, perhaps that is just the exhaustion finally overcoming things and setting in to make me rest) and staying indoors means I can do very little damage or harm.

My Chanter arrived and I've just been trying to re-learn how to breath and play a reed instrument, and get my lungs in a better position. The asthma meds I've been on all summer have really worked, and I finally do feel like I've started to get some breath back in me. In a literal and figurative sense, I guess.

Nights are still the hardest. Sleeping in the big bed without him... I did do it for years before he came along, true, but I had very much gotten used to sleeping next to someone, next to him.
His breathing patterns. His touch. His smell.
For the first few days it gave me comfort to sleep where I could still smell him on the pillow. Now, I'm still not ready to wash/toss our old sheet set/his pillows (several people have offered to get me new pillows and linens. I will take them up on it when I am ready) but, I get a better sleep in the other room; where I can smell books instead of just... him, I suppose?

I've had a lovely show of support in the last bit; it's impossible for me to conceive of the idea that is has almost been two weeks now without him. Thank you for sharing kind words with me, stories, and your own encouragement. I've read them all; most two or three times.

Time has become a new concept to me. The timing of everything. Time that seems to stretch on for so long now. Time, which had been like long taffy being pulled, suddenly cut into a tiny square, gone all too fast.
3 years gone in the blink of an eye. 4 years gone after a night's sleep for a few seconds when I woke the other morning. The disconnect. What is real, what is not? Seeing his death legally laid out; pretty clear. Seeing his body; again, pretty clear.
In the TARDIS though, now... it's changed. What to do with all this time? Time promised to him.

I feel quite lost and scared most of the time. Today it hurts especially hard, even with the help of the meds, because I am seeing the foot specialist. Though it is a rare option, surgery is still on the table as a possible option for my foot at this point, and that terrifies me, even more than remembering every bad moment with Wash's tumor.
I wish he was here. I wish he was making his pun jokes, and doing what he could to distract me. I miss the level of comfort he gave to me on a level across the board. He was like a warm blanket on a cold night, but as a person, he just radiated comfort and love. At least, to me.

At the same time that I am starting to move forward in some small ways; getting rid of his death shroud, working on the memorial, finding new hobbies, trying to do things that don't involve making my feet worse, I am starting to have guilty feelings for not just ... sobbing?
I know this is the start of "Survivor Guilt" and I'm hoping my shitty insurance will get me in to see someone sooner than 8 weeks from now. I try to use a little trick from my CBT days to identify those specific guilt thoughts and let them go. Because Wash would most truly not have wanted me to be suffering (well, extra) right now. Not at my own making.
I am not Queen Victoria. [sadly. In this life]
I did not have 12 children with the man I loved. Or get almost 20 years together.

But I also am 25. I cannot lay out his clothes every day. I cannot lay out a place setting for him every day, and eventually, I will need to clean up his desk to make it more usable for my own self. I will pass on some of his books as he wanted, so others can read and enjoy them.

However, I have noticed I feel more comfortable carrying or wearing something with a TARDIS on it if I leave the house. I am not sure how "good" or "bad" or anything that really is.

It's hard still, to live hour by hour. But I do strive for that next hour to come, and I'm trying to rest enough to find myself and figure out what it is I will do now with my time.
It may be 60 years now before I go. That to me, in this moment, seems a far too long of a time to remain depressed and waiting for Death.

I do not fear Death (I don't think Wash did in the end either) but, I want to find reasons to keep living. I want to have a purpose again.
It's just hard to figure that part out when my heart cries so loud it drowns out my brain.

Thursday, September 20, 2012

Memorial Service

Stream-lining the information for Wash's memorial service.

It will be December 8th, 2012 at a location just North of Phoenix, AZ. [It's about a 40 min drive from central Phoenix]

Please add me on FB [and send a message you are from the blog] or send me an email if you would like more specific information to attend.

***********************************************************************************


To that end, Wash had asked his guest not wear traditional "Reservoir Dogs" type suits. He wanted colors, and I can imagine he would be please as well if anyone chose to Cos-Play and dress as someone from Doctor Who / Firefly/ BSG.
Wear a Jayne hat if you have one.

More details will come as the plans are all settled and confirmed. Wash had made me promise not to make anyone come out to Arizona in the "110+ F degree heat!"

He also made me promise to buy something pretty and new for the occasion. I don't really care about clothes... at all. He knew this. I think that is why he was so specific. So, I am either to find a lovely new Sari to wear, or Kaylee's pink dress from "Shindig".

I am hoping my asthma will be cleared up enough by then to be able to play his Didgeridoo. I mean, I have my own, but I never played his, and this seems like a good occasion to do so.
I loved that about him; someone else who not only loved to listen to bagpipes, but played and owned Didgeridoos. [Yes, I am aware of the cultural issues of a female playing the instrument, not the time for that discussion]

I think I will also be checking to find a way to live-broadcast the service online for his friends around the globe who can't make it there. He would have loved that.
***********************************************************************************


I'm trying to keep busy, without being on my foot.
I got in to see a surgeon/specialist next week, so for now I just stay off it as much as I can, and wear Das Boot. I did a little more cleaning, and hope to have some help come over this weekend to clean out the downstairs bath (which he had to use for safety) so it can be a functioning guest bathroom again, and clean up the kitchen so all the pills can go away... I can use my counters again, get rid of the excess food for him; his meat, special stuff, certain teas. I will probably pass along some of the excess plate-wear as well... why do I as a single person now need service for 12?
Small steps. Soon I'll set out some boxes for certain friends and start filling them with his stuff like he wanted. I think the/our bedroom will be the last thing I do. I'm not ready yet to change it so much. I do want and need to pass along all his really nice clothes to the local places that give them to folks who need nice clothes for interviews/work. Before he got sick he was a fastidious dresser and I know (we'd talked) he wanted someone else to benefit.
I'm keeping his "Wash" Hawai'ian shirt though. I will probably never give that one up.

The cats are slowly adjusting. They both sleep a lot closer together and play fight maybe once a day now, not several times. Aelphie has even on a few time been caught grooming Leto's tail. They don't seem to like to be left alone though, they follow me around the house to every room.

I might make a video update later; it would give me a reason to shower and brush my hair.



My heart just hurts. Even with both Kitties there is just an emptiness around here. Minute by minute right now.

Tuesday, September 18, 2012

Spoilers, Sweetie





Kevin Pratt-King came home today; for the last time.

As per his wishes he will have a part of himself shot off in rockets(details to come); the rest he wished to travel in his custom made TARDIS urn.

Only Kevin "Wash" knows how much bigger it is on the inside, or how big the pool in the library is, but he is where he wanted, and hopefully starting amazing new adventures.

Thank you to everyone who has shared his story.
Thank you to everyone for your amazing show of support for his family.
Thank you to his fellow Browncoats for carrying him, and thank you to his Whovian brethren and fellow geeks (and CF4L) to help make sure his final wishes would be carried out.

His energy was only in this form for 28 short years, but his love touched the world.

I'm not sure what his next regeneration would look like (he'd hope for Ginger too) but I know he'd tell me, "Shh, Spoilers."

You are now a Leaf on the Wind Wash; we will watch how you soar.
Final journey for my Time Lord: bringing Wash home in his Tardis urn. Next stop: everywhere! Allons-y!
Not great news from my doc: foot still broken and i am getting surgical consult. But no guarantee i need surgery! Errand day w/ mom. Lawyer, funeral home etc.

Monday, September 17, 2012

Waiting on the Giggle Loop

Hard morning.
First Monday; first start of a week (and New Year) without the man I expected to spend my life with.

I'm hoping to bring him home today.

I feel too young today. Too young, too hurt.

It's like the most perverted cultural opposite; this time I will be carrying his ashes over our threshold.
How does one even prepare for that moment?



I've been trying to be/sleep at home more. Some nights I can do it, some nights I cannot.
It hurt waking up today.
It hurt to hear the kitties cry. They have food, water, litter.
They just miss their Dad. I do too.

Aelphie and I had each other for a few years before Wash came around. It took her most of a year to even accept him.
Leto has only EVER known life with his dad. His whole existence has been keeping his dad company through the day. It hurts to see them confused and not have the words to let them know he is not coming back.

I have good moments and bad. Good minutes, bad hours.
I hear the ticking of Wash's pocketwatch. I've been keeping it wound for him.
Tick-Tick-Tick-Tick.
One, two, three, four.

He still carries my heartbeat.


I'm wondering if I should watch Firefly, BSG, Doctor Who, or Torchwood for him today.

Sunday, September 16, 2012

Wash...He did Abide


Lovely little eulogy prepared by a friend (Chalupa BR)


Friday, September 14, 2012

You...You were Fantastic!

"Death cannot stop True Love; it can only delay it for a while."

"I love you, Wash."
"As you Wish, Tashi."





Thank you all for your kind words.

Wash was a Saganist and a Doctor Who lover.
He knew he came from stardust and atoms, and he knew he was going back to that.

His energy is not gone, or destroyed. Just... wibbly wobbly a bit away from MY linear time.

Wash is the only person I know who made it almost 3 decades of life... with not a bad thought or word to be said about him. He was beyond special. Beyond unique.
He was more than my 1 in 6,000,000,000.

He resonated in my soul. He kept my heart beating.

And I know he would think it is no greater honor than to introduce all of you to the wonders of the Whoverse and Science Fiction.
His fraternity brother made the comment, "He was a geek evangelist!" ... he was.
He wanted everyone to love his shows and movies with the same passion he had.


Right now, every time I see a TARDIS... I tell him I love him.
Somewhere in Time and Space, he is out there now.



Wednesday, September 12, 2012

You're not falling, Wash, you're flying...


Kevin Pratt-King "Wash" stepped into his own TARDIS to start his next adventures just before mightnight, 11th September.

He knew how much he was loved, how his story touched so many.

I have lost my husband, best friend, and my Companion.
Thank you, friends & family, Geeks & Whovians for helping me to love this wonderful man.



Now I become The Girl Who Waits my lifetime before I join him.

I can only hope he is already off on a wonderful new adventure that I could only dream of.


Good-bye, my love.

Monday, September 10, 2012

Into the Open Air

Wash had a good Sunday; saw his friends N & T, watched "Blink", ate well.
He informed me around midnight he felt he was going to pass shortly.
He asked me to put on the finale of last seasons' Dr Who; The Wedding of River Song.
He fell into unconsciousness before the end of the episode, around 3am.
His last moments aware were of being loved, seeing a show that made him so HAPPY, and knowing he was going to be going off on his own adventures soon in his own TARDIS.

He is in a Hospice Home now where he can have the best quality End of Life.
Thank you all for your thoughts, prayers, wishes, hopes, messages, support, and love.

We could not have made it this far without all our friends acting as Browncoats to carry us through these trials.

My Wash's next adventure will start soon.

Sunday, September 9, 2012

Showers at midnight still count as long as you get clean! #CaregiverFiles #btsm #themoreyouknowcanceredition

Friday, September 7, 2012

Wash had a small accident today and got into his pills while his aide was cleaning up. Waiting to hear from hospice about what to do. Took 4 over the dose.


UPDATE
7pm
Wash is NPO until the morning, in case he aspirates and is only allowed his liquid meds, no pills for the night. He is supposed to just sleep on his side, and I put a barf bucket out for him in case.

So. Fun never ends over here!

Leto watches "Animal Cops" with me

Heard back first thing from AHCCCS/Insurance Dept. They just need a statement that I hurt myself when I broke my foot, and that it was not the result of an auto accident or work injury (ha!).
I asked if I could write down that it was due to lack of paid help from the same insurance for my husband's care, and the lady was, "Sure, as long as it's true."

AHCCCS, check.
Your move.


Raining this morning. Woke up to phone calls. Back to sleep. Rain. Back to sleep. Cats crying for Nums. Back to sleep.
Wash screaming and running/throwing himself down the stairs; WOAH, OK I AM AWAKE.

He heard the neighbour's door knock and in his brain that was his cue to wake and "Oh I need to go to work!"
He came down the stairs and just started falling over everything.

It's gonna be an ... interesting... day.

Thursday, September 6, 2012

More Fuckery

Got a notice this week; I have a few days to respond to a questionaire about my "accident" (??) or I lose my health insurance.

Apparently, AHCCCS (my insurance) believes for some reason that another "individual or corporation" caused my broken foot (based on the date on the notice, I believe this is for my fractured foot not my broken toe) and AHCCCS wants me to name them, or else pay approx $15,000.00 myself.

WHAT?

I fucking FELL. Because *I* was not listening to my doctors to take it easy on my broken toe, and it was City sidewalk. What, are you going to sue my heavy garbage bags??
It makes NO sense.

I left them a message to call me back about my case within one business day. If I don't hear from them by noon tomorrow, my afternoon will be spent on the phone with the Attorney General of Arizona, and the State's Insurance Commission.
I am too tired and too godsdamned sick to let them take advantage of me.
I also contacted my doctor's office; they checked the billing with me over the phone; they billed about $217/change to insurance; and they have been re-imbursed their 70% already. The gal in billing assured me there was NO procedure they even HAVE at the office that costs $15K to billing. My X-Rays were only $200/each! In the doctor's office; I never went to the Emergency Room! [Where a $15K bill for a broken foot can be understandable]. Oh, and they confirmed I had a $0/balance at the office.

I have a sinking feeling since it is plan renewal time (Sept) they (Insurance Comp) are doing whatever they can to drop sick/ill people from the plan. Like me, who costs a lot of money, since I can't really take proper care of myself while I'm watching Wash for 21 hours per day.
Every single year they try to drop me from the insurance rolls, usually when my health plummets and I need doctor care and supervision even more.

Ugh. I have no patience for incompetence anymore. I won't play by their rules. Their rules are literally set up to kill me. Frak that. I'm playing by whatever I have to to stay alive.


As for Wash, he had a pretty terrible day yesterday. He is having a lot more pain daily, so we are getting some new longer acting stuff to try today, in addition to his hourly/breakthrough pain. His headaches are back. To me, that along with his balance issues, his eyesight going, his ability to read is going... he is still very visual, so drawn out instructions are still understandable to him, but things like cursive is just too complex for him to even read now.
He is also sleeping more, which could be from any number of things, but his Hospice Nurse agrees with me that letting him rest is perfectly fine; when he sleeps he doesn't hurt, he is more at peace. I like that.
We have another friend coming in from a city a few hours away this weekend to pitch in and give me a hand watching him, and getting me out a little bit when his Aides are able to watch him. I now have my own bathroom back again, which is GREAT, and I've cleaned the office/library up enough to get a little twin bed in there for me. So, I have some space for me. I've been crying more with this space; I have more privacy, but it hurts so deeply to understand the WHY behind me "moving out" of the master bedroom.

It hurts too much emotionally to sleep next to him. Not to mention his snoring, his kicking, and his pain screams when he wakes up literally screaming in pain.
He can't remember, so he keeps offering to sleep on the couch so I can have the bed. I tell him I am ok, and I stay in the bedroom with him until he falls asleep each night so he has that feeling of security when he does fall asleep.
I've been thinking a lot about my maternal grandmother, my Grandy lately. It's the 6th anniversary of her death in a little over a week, and 7 days after that will be the 6th anniversary of my paternal grandmother's death. Yes, I lost both my grandmothers in a 7 day period.
I tend to get seasonal depression every year in Sept now.
The selfish part of me hopes Wash won't die in September, because that is just too emotionally hard for me. But, I know it is a selfish thought, and he needs to go when he is ready; not me. It's not up to me.
But, since moving into the office/2nd bedroom, I've been thinking a LOT about Grandy, feeling the same kind of comfort she used to give me when I was alone at her house away from my parents as a little/young child. It's very hard to describe, but late at night, when the clock ticks past 4am, I feel "her" and I feel safe and comforted enough to sleep. I don't want to think too much into this, outside to embrace this feeling of comfort when it comes to me.

I am very happy with a few cleaner spaces. Wash is still having a very tough time adjusting. He wakes up with a LOT more confusion these days. His verbal skills are declining, and he needs his Walker or his wheelchair now to really get anywhere.

I am broken-hearted he has degraded this much. He never wanted this. He wanted death before he lost control like this.
Based on his pain, his headaches, his balance, his smell change.... so many little things I never picked up on back in 2009 I'm constantly seeing now. I'm more than 90% certain there is another tumor in there, maybe a few small ones. He still does not want any scans, and I won't force them. I think he really is happier when he can ignore or pretend there is not some strange thing in his BRAIN killing him.
I think I would feel the same if it were me.

It does not make it any less painless to watch though. I've been dealing with a lot of my own grief issues. There is so much loss; what already happened, and the loss of our dreams and hopes and frankly, my own future. It is lost. What I wanted, what I desired, is lost, forever.
I will never bear his children. I will never get to look at a child, MY child, and see any part of him looking back at me. That will never happen.
It is heartbreaking, and soul-crushing. I have to lose my best friend, my husband, my partner I should have had for 40-60 more years, the life we would have had... it is gone.

As much as I am happy for the friends I have that are moving forward with their lives; and I really am. I'm happy when friends buy their first home. Graduate. Buy a new car. Get their career, not just a job, get engaged or married, get pregnant or have their first/second child.... I am happy for the people I love to be able to have these wonderful things happen.
The same time, it just hurts so much to know all those things *I* will never have, will never achieve.
I don't see myself getting out of debt and ever graduating. Or even being able to pick a new major and start literally all over in school, because I'm so traumatized by Wash's rare cancer to work in the medical field like I had once wanted to and was in school for.
I don't think I will ever have Credit again to allow me to get a car that is new or even less than 15 years old. Forget about a job or career for me and a house/home for myself. Nope.
I found my love and married. Odds are not in my favour to ever meet anyone who I will love like Wash, or want to give my whole life to, like I did for him.
I'm going to be 26 in two months. When that happens I will have to accept once and for all I will never have my own children. My doctors told me long ago waiting was not good, and my history does not have a good track record for being able to get or stay pregnant. The odds of me "moving on" soon enough after Wash does pass, heal, and find someone who I somehow DO want to have a child with...? I just literally cannot see it ever happening.
So I am having to mourn that I will never be a mother myself. I never thought at 26 that's what I would be doing.


This is my/our life. This is what is looks and feels like watching the person I love more than my own self lose everything about who HE was, and become a shell of a body that is just in pain.
It's not fair. It's not "right". And it hurts in a way I wish so deeply that no other human should ever have to face.

I'm going to try to nap, or maybe shower while the Aide is here today for a few hours.
At least I (and my awesome friends) have figured out how to order me groceries to deliver to the house; it is a nice thing to have to NOT worry about food in the house.
Interesting day: higher dose pain meds for wash coming today his headaches are back. Dealing w/ insurance myself apparently my broken foot is $15K I owe! WTF?

Wednesday, September 5, 2012

Bad morning. Lots of anger yelling screaming at me. He is in so much pain today. Hour by hour. Send peace please. It is so hard to watch his pain.

Tuesday, September 4, 2012

Open the Box

Wash is having a super bad day.
Needed a LOT of medication this morning.

Did not know where he was for a while, could not remember we were married. He knew/recalled who I was, but I looked "different" to him this morning, which confused him.
The house has changed a little and he was very upset/confused where all his things were today?
Also when he was flipping channels he saw the date and freaked out; it CAN'T be September already! No! It's... the month that comes after January! He knows!


I hate brain cancer.
I hate what it has taken from us both.

Saturday, September 1, 2012

Enjoying a night of movies and talks. Wash is watching galaxy quest w us while his pain meds kick in. Lots of laughs a nice change for us.