A request from Wash...

Those long-time readers have seen all the stresses Tashi has gone through for the past couple years to keep the both of us healthy, both physically, mentally, and financially (thanks in no small part to your efforts).

Now that we finally have a vacation coming next week, I'd like to arrange a spa day for her, a massage, a pedicure, those sorts of things. The ideal package comes to $230.

Any help you can provide would be wonderful, because I don't have the means to make this happen, but I'd be most grateful if you all could help me help Tashi.

Just give what you can to the Mountain Serenity Day Spa in Flagstaff

928-600-6038 , and place it under Pratt-King

Thank you, Everyone!

Wash

P.S. Thank you for all my good wishes on my last MRI, they certainly helped!

Wash's scan came back nice and clean! No new tumors or brain matter shrinkage! Best news to get at this point.

Month 17

MRI day. Wish me an' Wash luck and a tumor free brain!

The Gamechanger

Yes, it has been a while. I even have a nice list of excuses; was sick, couldn't type, sick...

Mostly perhaps it is my own fears that keep me from writing lately. I have lost my own hard little shell and everything seems to be brighter,stronger,louder, and intolerable for me. Spring is coming and Wash is certainly happy about the sun coming back, but it is not the same for me.

My garden is overgrown with weeds and I just cannot bring myself to really get in to replant. It feels like more of a challenge to just get through the details of every single day. Always so much to remember, to time correctly, to fix when insurance fucks with us.

There has also been some sad news locally with some of the other brain cancer patients that we know. Seems "stable" patients are all getting tumors this spring. Wash is almost at 17 months. I don't know how much more time he really has. He has finally started to talk details of what he wants at his wake with me. I guess that is a good start for us and him.

Planning his 27th birthday party for this summer and his own wake.

That messes with your brain. Even for a normal person, and Wash- he is not normal anymore. To me he never really was. He's just special in a new way to me now.

Some days it has seemed like a dream, good moments and the ability to just forget the pain and tragedy if even for an hour. Now it seems that I cannot get it out of my mind, and the fact is that I, I am not ready at all for this. I am not ready for him to have another tumor. I am not ready to have to fight with him against this again. And even more so than all of that I am petrified and wish I could just hide from the truth that my husband and best friend is dying and some point all too soon he will be gone.

We have a week before we go "on Honeymoon" for a week. Just a small place up in Flagstaff for a week, but I know what the week is supposed to represent. How can you enjoy something with the foreknowledge that it is the last of that thing? I think it is really setting in for me that we will never get our "special" honeymoon in New Zealand [Wash wanted to save to go on our 5th or 10th anniversary] and most likely I will never get to take him to England or Scotland to see where my family came from, or to Ireland which both of us longed to visit.

We can have a honeymoon week, but no talk of a future that is not to be. The child we will never have. Play games, read, walk... try to avoid the issue of brain cancer which is like trying to walk over the Grand Canyon. Sure you can try, but you won't get far.

I don't mean to sound un-thankful. I am. I am so lucky to have had him come back, to have him still able to even remember me, and lucky for the time we have been able to have so far, every day since my 23rd birthday.

It crushes me to think of him gone.

He is my 1:7,000,000,000

I am supposed to be the anchor and here I am lost and trailing away.

I'm fairly sure this week is going to change everything.

-----------------------------------------------------------------------------------------------

7 new scripts for me this week and much pain. We've spent more this week on my health issues than for Wash's! 4 trips to the Pharm.

I'm feeling terrible because I'm spending money on my health not for Wash right now.

How fraked up of a system is that? He and I are both sick, but I have to worry about him because health is seen as a Privilege and not a Human Right.

Seems only certain rich white males get to stay in this State without consequences. How do you know if you're in Arizona? There are a bunch of loud, white, Christian-faithed males telling you to stay and buy guns (if you are also a rich, white male), and everyone else in the state is told to run and leave or just die quickly because tax credits are more important than human life in this state.

Well, more important than poor human lives.

Going to the Doc's today for me.

Not too thrilled about it, but it's needed. I'm not feeling well and it's at the point where it won't just "go away" or get better on its own.

Wash is still a bit- more so- nervous about his upcoming MRI next week. There has been lots of talking between us about what may be to come with that.

I think at least having the kitties sleep with us helps him to relax.

I just want some good news.

No Holds Bar, Machete to the RedTape

Just phoned AZ Rep Kirk Adams office wondering why he personally is ok with killing Wash? He voted against a bill yesterday that could have saved AHCCCS and eventually Wash's life in this state. Anyone else want to spend 2 mins or less to call and ask him as well? 602-926-5495

You can also leave a message for Ms.(Gov) Brewer 602-542-4331

Please feel free to ask her why she is ok with spending state dollars to keep her (rape/assault convicted) son in a State run hospital, but she is ok with letting my 26 year old husband die of (painful) brain cancer in her state?

Hard questions.

It's time. I want answers.

Surprise! *knock knock*

Just helped to save a girl's life; She hit our door, couldn't breathe due to severe asthma/ COPD. I administered 1st responder aid til the EMTs came. Wash seems to think it's something special, for me it just feels natural.

So much for a "quiet" Monday night!

-PS: If you don't know CPR or the better and preferred Rapid Chest Compression your local Red Cross can help http://www.redcross.org/portal/site/en/menuitem.86f46a12f382290517a8f210b80f78a0/?vgnextoid=aea70c45f663b110VgnVCM10000089f0870aRCRD

Or you can call your local Fire Dept and ask about classes.

I just hope she is ok overall.

My closet womb

A week gone by, so much and yet so little to say.

I stayed offline pretty much the entire week. It was all too much for me; the news, the hysteria, the worry...

I spent most of this week inside my own head. Searching for that little space of comfort. I admit, I did not find it.

Wash and I this week have been bouncing back and forth between wanting and trying to make a future of some kind for maybe one of us, and seeing the harsh realities of what is to come with this disease. His communication is declining. Even when he is "clear headed" as he describes it is getting harder to follow his logic, train of thoughts, or even for him to complete a thought.

This pains me so. I can try, but I cannot fully grasp how much this hurts him.

We've been rubbing against each other as well- tiffs for power. He is sad and perhaps getting around to accepting his disease and mortality, but he still forgets that he does have limits now. He wants to go jump in the car and drive himself over to a store or to play games.... and he just cannot now. He can't drive. It's been me for the past.... months. He can't remember always to check a list when he goes shopping, nor does he have the frontal brain to reason if he has to decide between more than one option or choice.

I need to be more patient. I'm exhausted and I think that's an excuse for it. My brain keeps hoping, perhaps expecting him to get "better", to go back to the man I married. And I have to accept he is gone.

I still have Wash. I still have parts of him, and he still has some memories. But I have been deluding myself if I thought he was the same person. He's not.

For that matter, neither really am I.

We have both had some good moments with therapy- getting at the root of some of the issues, and for me clarifying which are related to his brain cancer and surgery and what might not change. I love Wash, but I separate off the parts that hurt me the most; such as his constant and small pathological lies. His brain is doing what it thinks it needs to be doing but it takes him a while (if ever) for Wash to really realize that what he said was in direct contradiction to what his actions were- ie: a small lie.

My feelings get all swirled around over this. I know I have to be more patient and I know I have to double check every single thing; I just cannot rely on his brain. For that matter, neither can he.

The next MRI is in a week. Part of this may be his normal depression cycle starting before the MRI like always, or maybe this time it is different.

He is in such an odd place right now, we both are. He has made it past the point when most GBM patients have their recurrence or simply die. But even at this many months out, very optimistically we may have 3 months left or if he is blessed maybe 3 years. We just cannot know. Schrodinger's Tumor.

So there has been lots to think on and occupy my mind for the past bit. On top of all of that, our neighbours are being little passive aggressive nitwits and sadly I can never get a photo of them doing it! They leave the best little notes and lies outside our door stoop. A "We don't even smoke!" sign with a half smoked cig attached to it... ah, life.

I need a safe place. I dream of having a closet I can climb into again like my last place. Mine here are too small and cluttered and the crawl space is home to my bone/human remains collection (all legal, I used to do anthropology and forensic work) so that's filled. I long for a small place, soundproofed, carpeted, dark, warm. When my Aspies is hurting me hard that's my escape, alas it no longer exists. I freak out around certain loud noises. They feel like sandpaper rubbing across my brain- a hurtful and violating feeling. Too much stimulation or sound or light can drive me to a breakdown.

I have to say, dying in Arizona is fucking hard. -If you are poor.

He's still just 26. This might be where he wants to die, but not when or how.

I know he is scared of what is to come. I am too.

My world feels like dream bubbles popping one by one. How long can it last?

What happens to the dreams, the hopes when they pop and just fly away?

Taking a 'net break still. Wash and I are still alive. I'm just spending less stress online and more love and energy onto him right now. Change in priorities.

Waking up to a Smile

So far today has begun well. Wash is almost awake- he keeps rolling back under the covers so at some point he will come out.

The kitties slept with us last night and continue to be fur covered fun balls.

My (step) dad heard from my mum again around 1am our time; she has met with our friends in Tokyo and is staying with them for a while. Apparently she got to go stand in a bread line for the first time yesterday! In a few days when the roads are cleared my bro will head out and go pick her up. He and his family (South of Tokyo) are doing fine/ok.

Today is a good day to think on memories, make new ones, and just be.

Large cats

My (step) dad heard/spoke to my mum today.

Huzzah doesn't really begin to cover it.

I'm still worried as she is still in Japan right now, but knowing she is ok enough to be able to communicate with us is a great relief to me.

Yay.

Winding Timepieces

No new word. So last I heard my mum was somewhere in Tokyo (or thereabouts) and my brother was stuck by/near his home unable to use the roads to travel and get her.

Doing my best to stay calm and remind myself my mum doesn't have a mobile phone and electricity/landlines are still down... but I'm still quite worried. I guess she will have some amazing stories to tell when she comes back Stateside.

Wash managed to upload our SteamCon pics at last! (time for a new SD card) So I shall place a few of them here now and pop up the rest with an article later on.

[These are from Sat/Sun at Old Tucson Studios for the WWSteamCon 2011]

Small and Large Grattitude

Finally heard from my family. My brother, sis in law, and nephew are ok and their place is fine. They live south of Tokyo.

My mom however is fine, but stuck up in the north part of the island and my brother is unable to get to her. He is hoping to pick her up later today- we'll see. I am hoping for the best.

There is a joke in all of this somewhere about not even an earthquake or tsunami can stop my mum from seeing her first grandson.

I'm on bedrest again today, spent half the night vomiting yesterday. Doing my best to rest and not get worse.

.... Even knowing they are all ok, I still worry.

Under the Covers Day

Finally am getting all the photos from this weekend uploaded.

It is a great feeling to be home, to be with my kitties, my things, my scents. However, it is a reminder again of the overwhelming feelings I have towards everything.

There is just always so much to be done, and always only me to do it.

Wash has finally started to realize that he is and has been a quite selfish ass lately. He keeps saying he wants/wishes to change, but still cannot tell me how. Or when.

There is just so much stress around me. Every hour of the day here I wonder if my husband will be losing his health insurance, or if I will.

How quickly will the State actually kill him, or us?

I am just so tired.

Sometimes, I think he is right. I wonder if I will ever be able to "relax", smile, have fun, enjoy things.

It's all just more responsibility on me.

Where's my Tashi to take care of me?

Speeding Particles

Made it to the 'Con. Both of us. Alive.

It was quite a process indeed. So many stops, so much packing, laundry, cleaning, kitties, and of course the repair-person cancelled on us without notice so the poor little furballs are dealing with no air in the house this weekend. We have fans though, and they'll be ok, that's why we have sitters.

I made very good time driving down- less than 90 mins at the start of rush hour. However, that's when things started to go a bit wrong. We hit the city right at rush hour and I was relying on Wash for directions. Since he had maps and written directions from the other half of our group as to where the hotel was, I followed his directions. By this time I am tired. I am hurting from sitting and driving for the day. I need my pills and I can't get to them until we unpacked. And Wash was doing his best to change his story every time he opened his mouth. Left was the same as right. North, South, East, West he didn't know and couldn't tell. 8 miles across the city in jam packed traffic and he says we went the wrong way. Got turned around and lost 4 more times before I finally had enough and just pulled over and cried for a bit.

See, by then it was about 5. Cherie Priest was speaking from 4:30-5:20. I missed her. The one (and really main/only) reason I had to come to this for myself (aside from Wash loving everything about it) was to meet her or at least hear her discuss some of her connected book series. The first, Boneshaker was autographed for Wash by our mutual friend (I think for his b.day, maybe xmas) and Wash loved it so much I decided I had to read it as well. I loved it. So, this past Christmas Wash got me her second novel in the same universe Dreadnought and I was really really wanting to hear about it from her. Or get my copy signed.

I was upset and in quite a horrid mood. My Aspie brain was just overloaded with everything, and it all became too much. I frakkin' bit my own steering wheel I was so frustrated. A lot of it was at Wash who just couldn't seem to grasp that for ME, I had just missed the only thing I was looking forward to. He enjoys it all and can't understand anymore that just because he feels something does not mean every one around him feels much the same way. I yelled and vented.

I guess it has finally been hitting him and starting to really sink in this week just how ... unhelpful, un-Wash-like he has been towards me lately.

He says, "Yes, I've been acting like a spoiled lazy little kid. I don't want that."

He just doesn't know how/remember how to change. His brain had the part that literally controls our overt motivation cut out. He relies on me. Hard and constantly.

I wanted my cats. I wanted my space, a way to just make things "right" which to me is sometimes beyond the ability to verbalize. I got calm again and we set out about 3 more times before we finally, at last, found the hotel. All told it took longer to find the place when we got to the city then it did to drive from Phoenix to Tucson. That's frustrating to me. Wash hasn't driven in months so it's always me, and sometimes... I just don't.want.to.drive.

Thankfully we were already checked in, had our passes and could just take my stuff to the room and unload. Which I did, and thankfully we have great large rooms/suite.

We spent the evening talking as a group and trying to be in a good mood for us all. Half went off to the late night concert and half (myself included) stayed back in the room. I got about 6 hours of sleep and I woke up feeling better.

Not really optimistic I'd say, but perhaps a bit hopeful at least.

I stayed back this morning; there are some tabling events at the hotel and they went off to the Old Studios where the other half of the 'Con is being held. I have some time to myself, alone, this morning to get back to myself and they get to go and enjoy the fun. We will meet up this afternoon for more fun, and there is a concert and Masque Ball tonight that I do still kind of want to attend.

I am reading and resting. I am thinking. I am trying to laugh.

I hope that is enough to count for something.

Confrontation

I want to write, to express about this past Tuesday. It is hard to put it into words, even harder to share, but when I started this blog I wanted a place where I could be totally honest and free to record it all, to get things out where I can work on them.

This past week Wash has not been getting all of his meds as needed; we had the funds, they just took an extra few days to transfer. I love that about America, every month I'm given the choice to give my husband life-prolonging drugs or keep our electricity on. (As an aside, I have decreased our winter power bill by more than 40% over last winter. I'm vigilant about turning shite off and unplugging things when not in use. Wash is not, but my hyper-attention balances it out)

So, he has been feeling "off". He is not really eating, he is awake for less than 12 hours of the day and his energy went from 4 hours to maybe an hour of being "up" before he crashed out. Vomiting and insomnia. Cranky. Slow.

It's been fun over here. <--- Sarcasm. This all came to a giant head for us both on Tuesday. I was impatient all day with him and he was just wrapped up in himself. We had a long-ass talk. He's been trying to "escape" lately and now has decided to re-focus on me and us as a couple, instead of more towards what he could have been, which is where his mind has been lately. I meanwhile got the chance to finally have his complete focus... this combined with the sheer emotional weight of everything meant that I was crying/sobbing for about 6 hours. Hard. All the stuff I normally keep locked away in the back of mind (or another organ that slowly rots like my old gallbladder) came out in large sobs and gasps of truths, though admitingly unfair.

Wash crashed out for about 3 hours into it, leaving me to my mind and nothing else. At that point in time it was the most horrible feeling.

I was so alone. The cats don't talk back. Wash was asleep. I tried to distract myself and the only thing that my mind was able to hold onto, the thing I could not let go of then was the thought that though Wash gets to (hopefully) die just as he wishes (even if early) with me, in the place he loves, settled... the things that I am fighting so gorram hard for him to have ; a peaceful and good death are the very things I will be denied. I could only see death in my wake, no friends, close family... I could see my own death, alone and destitute probably in a state facility somewhere with no one to hold my hand when I die. That felt like a burning and heavy stone right on my chest smothering me.

Wash woke up eventually and I was still crying. We talked and I vented more. He finally got me into a place where I could just relax and let go of all the pain, at least for a time. I managed to stop crying. I could breathe.

Wednesday I tried to rest and get things organized and ready to go for us at the Wild West Steamcon. Sadly in the midst of a better day- a good friend came over and spent some time with us and gave me wonderful hugs- there was some sort of tragedy right across the street.

We have a neighbour who we love. She's an older woman who also gardens and we always greet and wave to each other whenever we see her.

Towards the end of the day I heard sirens approaching our street; 2 firetrucks/ med trucks. And a police car. Then an ambulance... that left without anyone in it. The firetrucks left and four more patrol cars showed up along with our city's Crisis Response Team.

I know enough to know that is not good at all.

I plan on leaving a calling card for her on Monday. I guess we just have to wait to understand this one.

We went to bed early on Wed and got a full nights sleep. Wonderful. I feel renewed. I feel lighter. Wash and I are ok as a couple and back to making jokes and laughing and looking forward to our "weekend away"- Wild West Steamcon! We're having a couple friends stay over to cat/kitten sit this weekend (it was not that hard to find someone to enjoy our kitties and cable) so I am not that worried about leaving them alone. It will be a good test run for our week "honeymoon" in April. There is still plenty to do, but I am more relaxed about it, able to shake off my stress just a little bit better. For me though, even a small amount is still something wonderful.

I might not write much the next few days but Wash wants to give you readers some video and such reporting from WW Steamcon so keep an eye out.

The hardest thing was really admitting it to myself, saying it all out loud. Sometimes it helps keep the monsters away.

Drained and pickled

Wash is starting to feel better, thank you to everyone who's been asking. His appetite/metabolism have been off (probably due to the long term chemo effects) but he is trying to get better.

I am literally having to place food in front of him and entice him to eat. I hate that.

Welcome to March- in two weeks I will be celebrating my 2nd wedding anniversary and wondering if my husband will be dead before we see number 3?

I've had some good personal news though, despite my inability to travel to the conference/symposium in PA, I am still able to submit my paper and have a grad student present it for me. I am beyond happy at this, for the first time in some years I have a little slice of education and learning and I thrive in it.

We're going to the Wild West SteamCon with some friends this weekend- they pretty much set the whole thing up and wouldn't take "no" for an answer from us. I'm glad. Wash is so excited and it will be a good test run to see how he takes some travel. I myself am really just looking forward to meeting Cherie Priest and getting her to sign my books. Honestly Wash has been to many more Cons' than I. The Aspie part of me is scared shitless for this weekend- the people, noise, distractions... it scares me.

A lot scares me these days, most especially my state and the constant attack it has to kill my husband- you know the good tax paying citizen, never arrested or ticketed, worked and was in college.... and got brain cancer. How dare he be poor AND sick AND young? This state demands as soon as you are born (and they can check your birth certificate) you pull yourself up by your own umbilical cord, if you are born poor or sick, it's your own damn fault! Die in a different state!

Oh Dear Readers, I have actually been told by an Arizona DES official that we should move so the State wouldn't have to pay for Wash's care. "If it was need based then everyone would want coverage!"

Oh yes, can't have that eh? Healthcare for every human? No... that pushes us all together and for some it is too scary to realize that every human should have the same basic rights, including the right to have medical care with or without funds.

I wonder, is there anyone else out there who has had the first two years of their marriage go like mine? Or are we just really alone?