Doves Cry

I am angry.

I don't know if this is a passing thing, a "phase" as it were, or if this is my new state of being.

I have a small cold. I'm not certain how my low grade fever is effecting me.



I am angry.
I am angry there is no space for me.
I am angry there is no safe place for me to talk, to someone.
I am angry that Hospice has to be considered part of the "safety net".

I am angry at my friends, the people I love. I am angry and love them at the same time. It's a painful contradictory feeling.
I am angry at life. I am angry at the inherent unfairness. Of it all.

I am angry that every week I see more friends have birthdays that place them at or right next to my age.
I am angry that every week now someone new is engaged, married, or pregnant. In about 6 months I suppose I'll be angry at all the births around his death date.

I am angry at myself and society. I am angry that I will never be pregnant again. That I will never carry life, that my husband will never live on. That I have no more family with his death. He was my family unit, and now it is singular, and I'm angry that I had so little time with him.
I am angry at the milestones I have and will miss.

I am so angry at society for telling me I am worthless if I do not reproduce.

I am angry at society for telling me I am worthless for being poor. I am angry when people say it is my own fault, my own choices. I am angry when someone implies Wash wanted or asked for terminal brain cancer. 

I am angry at myself because I cannot be fully happy for my friends.
I am angry at comments about couples trying to get pregnant for under 6 months, and how upset/sad/frustrated they are. I am angry when those same people then immediately get pregnant.

I am angry that I have no one to talk to.

I am angry at my best friend for dying, for leaving me. I am angry at myself for that very thought. For not being happy he is not in pain, like he wished.


I am angry when I stare at his TARDIS urn every day and night and wonder if anyone else remembers him?

I am angry that he died before so many wonderful things.
I am angry he will never see the Doctor Who 50th Anni. special. Or be part of it in some way, which he would have; if he had not had the cancer and was still alive.

I am angry at being told I have to change so many things.
I am angry that so many things will change and have regardless.

I am angry that I can remember the last hug I had from him, that I remember it was the last.

I am angry that I have to live a future without him. I am angry that I wake up every morning, and he does not, will not.

I am angry and it feels like a hot weighted stone upon my heart.

I am angry that I feel so utterly useless.
I am angry how disposable I feel. I am angry at the daily implication that my existence is worthless- or worse, costing of others.

I am angry, and so sad.

ECCC episode IV: A New Hope

There is too much for one, or even two posts from the last week. I will have to do a poor job of just summing it in brief.

I was happy. I was happy this past week, in a way I had not been since 4 years ago when Wash and I took our little trip to Vegas and got married.
Those few days of, and the two days of 'Honeymoon' we had after were my happy moments. The happiness in his face, our joy, and our utter faith and confidence that we (might have some bad and good moments) would be together from that point on, for decades, until we both died in our advanced ages- hopefully together.

That is really the only thing I could ever be mad at him for; he broke that promise. He promised, he swore to me he would let me die first.
I cannot be mad though, as he did not ask for it. He did not ask for cancer, and he did not ask for an early death. He did not ask to die before he ever saw 30 years go by.


So, it was a difference. 4 years without really having a smile, sustained joy. Excitement.

Meeting new friends was more wonderful than I think I'd felt it at any other time in my life. It is like an emotional puzzle with other people as pieces, all coming together to create a feeling of 'completion'.

Seeing some "old" friends was a true joy as well. I had a chance to bond and become much closer to someone Wash was quite fond of, and cared for. Well, he did that with all his friends, true, but I recall him saying many times over how much we all had in common- he expected us to be the type of people to remain close and good friends for our adult lives.
Having had a longer chance to meet and talk with her, his lovely Brother, I have to agree.
It was a feeling so lovely, so happy, so light!, to be able to talk to someone else who knew my Wash BEFORE the cancer. Who knew him as the person/man I had fallen in love with. It was easier to remember the happy times we had BC and to share them, and mostly to laugh.

It was good for me to see his friends and the other people he adored/loved who carry on his passions. Who love certain parts of architecture as he did.

Perhaps that is one reason why ECCC was so comfortable for me; instead of utterly terrifying.
It was a giant center filled with people very much like myself, and even more like my Wash. There was familiarity there. A sense of remembrance; not having ever been to Emerald City ComicCon, the exact layout was not familiar; but the people, the CosPlay, the games, the booths... all images that I recognized.

I went down at one point to the lowest low convention room/basement/lower basement.
Also known as the "Gaming Rooms".
..........
[Insert Table/Card/Dice/LAN gamers growling at yet again, being stereotyped even within the 'geek' Subculture, and thrown in the 'basement']

One person I spoke to suggested, perhaps only partially joking, that the elevator button just have a sticker with "Dungeon" put over the Lower Level/Basement button.

However, I wanted to see if I could find anyone who way playing Warhammer [40K or Fantasy] or a table-top game, since I play a bit myself. Mentally, it felt like Wash would also kick my ass or haunt me if I was at Con and did not check things out.
I am glad I did.
I met a exhibitor there who introduced me to a new Table-top game [Fanticide] which my friends ended up buying for me.

It is a pretty cool game to begin with; but more so, it is compatible with other TT sets. You can buy specific models for the game, of course, but you can also use anything else you already have/own.
For me, this is really the best I can ask for.

I can have a (new) game to play with some of *my* W40K sets and minis that I kept, and the local Games Depot took Wash's old stuff to be donated to their game room, for all others to play with. [Outside of what he Willed for his friends to keep]. I can go down, play on the terrain that Wash and I made, but not the *same* game that we played. It will not have those same memories, which are mostly keeping me from doing any W40K playing myself. It is too hard, when all I can think of is him as a missing partner.
With a new game however, I am excited to learn the new things, to build on the knowledge that Wash gave me by teaching me these kinds of games [slightly different than the D&D stuff I did a LONG time ago].
I'm excited about playing this new game.

I know that Wash would have been pleased beyond words at that.
I'm pleased with myself for feeling I'm doing this more for myself than just for his memory.

Highlights I will address in future posts; meeting specific people/celebrities, panels, Con commentary.


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

I am back home now.
My cats have calmed down, some. Aelphie does not wish to let me out of her sight (like she did as a wee kitten) and if she has the chance, will crawl into my lap.
She is not a lap-cat, either.

Leto has been chirping a lot more, and running around- pretty much acting like a kitten. At 3 years old for a male Maine Coon, technically, he still is a kitten. I am pretty certain he just missed having someone around- all.the.time.
That has been his only life really; as a companion. To Wash, every day for more than the first two years of that cat's life, he was with Wash. Then, me.
I think if Aelphie would tolerate it, he would play with her. She does not, alas.



This has been a very changing week for me. Though I have had a lot of fears, I have learned that I can get through them. Not all the time, or even with 100% consistency, but I can. More so, I tried. I put myself out, I lived as Tashi; and I let myself experience life as Wash would have (wanted).


The past week opened me up to trying again. To See.

There are times still to just be Going Through The Motions, and now I also feel ready to try living again.
That spark in me of love, and life is gone. I know that. He is never coming back. I will never feel that same lifebeat with anyone else.
But I still remain.

My heart still beats.
I still breathe, even when it is hard or I've forgotten how.
My blood still flows, my mind and body; still connected to each other and the world.


Brain Cancer- Glioblastoma Multiforme took my husband, my love, my life, my Wash, our future.
It took from me too, so much I perhaps cannot even list it all.

But I still remain.

I cognate.
I see.

I remain. 

To Teas

I've had a lot of emotions going around inside myself lately.

It is odd; this mixture of feelings I am having. So very lonely at nights, when I should have my love and his warmth next to me.
Twitching at the Silence inside the house, only the cats and artificial sounds abound.
Enjoying the small moments of having both cats cuddling with me. When friends come to visit. Trying to find myself again in whatever way I am strong enough for.

Steps forward and back.
I'm finding it easier on some days to just put on a mask and lie (I consider it lying, at least) and smile and nod and say "I'm fine. I'm doing ok. Let's talk about _________."
Some days, it is not a lie, and I can care. I do care about my friends and their lives.
Some days, it is hard to smile to see someone I love celebrating what I lost or never will have.


I am doing best to move at my own pace. There are some influences in my life (no comments needed, please) that think due to some reason... (age? length of marriage? ??) I should be doing certain things by now, taking certain "steps", walking a certain path.

That's not really what I feel entirely though.
I might have been following a trail once, but it veered very much off the track. I might have been following steps of others who had their trails veer from the paved, smooth road, but it had long since been covered up by circumstances.
Bush-whacking? Is that the term? Trail-blazing?
Some days the walking is easier; the ground level, the air dry and wind calm.
Some days... headway can be measured in inches or centimetres not miles/kilometres.

I get overwhelmed still, so often. At some predictable things I am learning to avoid until I can learn to deal with it. Surprises however can not be that entirely prepared for. I can prep as much as I have learned in my life, but there might still come up some new problem to solve that my wits and skills alone cannot win.
Those days are the ones I fear lately.

A lot of it with the holidays, a lot of it with memories of sadness at holidays past.

Thank you to everyone who has been sending me holiday cards. They do help.

I still have not quite figured out what to do for Christmas eve or day next week.

I am starting to become functional in some ways, but mentally, it is so hard to just make a decision. There are always variables to consider and I am compelled to consider them all.

I miss company as well though. I miss companionship. I miss watching a movie in the evening after dinner with someone, talking maybe even laughing, and going to bed warm, touching the person I love who loves me. I miss the sounds around the house; doors closing. Kitchen sounds. Talking and laughter. My own laugh often sounds so odd to me now, though it does come more often.



I try to be thankful for those who loved us and helped us throughout the years, especially around the holiday times. But, that puts me in the past; such bittersweet memories.
At what point I wonder, does it hurt less to remember? Does it ever?
Perhaps like all grief, it truly varies from one person to the other.


Some times it is the most simple of actions, the littlest of things.
Someone to bring me tea in the morning.
Hugs. On a daily basis. More than once a day even.
Kissing.
Having my hair stroked by him. The way he sometimes would wrap his fingers in it as he slept, keeping close to me.
Hearing my name.
Being told "I love you".  Knowing it is meant when it is said.

The world does go on, yes.
My friend put it very well in some correspondence with me:
"Making friends as a young adult, the way we mostly do it, is easy. Most people have coworkers or fellow students, so their friends are handed to them on a platter. You've got a triple-whammy situation happening, in that you're much older than other people your age (not just because of Wash; I think you started out that way), you're not in school or working some crappy job, and you've seen a whole lot more than most folks do in a lifetime.

There is no way to overcome those barriers that does not disrespect what you've done and who Wash was, so I won't even suggest that you not talk about him or hide what happened.

You must not allow this to make you brittle. You *must* not. Even in the worst moments while Wash was dying, you reached out to other people and were beautifully flexible and loving. Most people don't manage that in a happy life. 

That said. . .these next few months will hurt. I wish there were a way around that, but there's not. You've essentially lived a life already, at 26, that most people don't have until they're 80. Now you have to go through birthing pains again, to be Tashi. It's going to suck, and it's going to feel hopeless at times, and there will be moments when you're glad for the absence of feeling, as opposed to actual pain. You'll end up as Tashi at the end of it, but you'll wonder sometimes if it was worth the price."

I do expect pain. I do expect more misunderstandings, and more patience needed on my part and every one around me. I don't expect it to be perfect or happy, or even an end. Life only ended for him, not me. I somehow how to keep more than breathing, to keep working to find myself again, who I am now, re-defined.

Without him as an 'active' part of me. Only part of my history and my shaping as a human. As the person who taught me what "unconditional love" meant on my own part; not just others'. 

The long journey really begins now. We've done the Kilimanjaro of brain surgeries, the Rockies of chemo and radiation over and over month after month, and now I am left alone to go up Everest. 

The Hope in the allegory being he trained me to do this. I have to trust myself. 

That is the next step. 

If doing this helps the next ones to follow in our path, perhaps my pain will mean something. 

I have to Hope. Some days that is all that is left. 

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.

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.

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.

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.

Visitors

Our friend Salvatore* arrived yesterday/this am with his mum to help out for a few days.

The boys are bonding well and I managed to get two great, solid naps today.

I think this is the start of a good thing.

Freckles

Wash is tucked away, with his blankets and little stuffed dog and Hoban the Bear. His pain spiked up very suddenly this evening but we managed to get it back under control and down to where he can relax, not spasm and sleep.

Lately he's been sleeping nights anywhere from 13-16 hours. The good news is the pain medications seem to be working, as for the first time in three years, he says his active neuropathy pain is going down. He's overall happier when he is in less pain. Though at this point, that is mostly the physical pain that is being addressed. The emotional pain from facing mortality at his young age with his already traumatized brain ... it can certainly make things harder some days.

I have been trying very hard in the last few days to really be calmer around him and just agree, even if he is making no real sense. My Wash would have wanted me to have passion still, to disagree and debate. But, right now, living it, I'm told left and right "Don't argue. Don't fight him anymore." Wash would not have wanted that. I'm not really certain what I want, and what is easier; or if they are now the same thing.

We have a good friend and his mum coming in this week from SoCal to help take care of things around here for a few days; to help watch Wash, give me some rest. To help me clean the house, take care of things I cannot with a broken foot. To let me get off my foot. To give us support; since Wash knows and really likes this friend too.

I want to be clear that it is not a case of our local support system being a "total failure". That is not true at all.

The issues are that our local support is 99% people in their 20s. Who are all just starting their own careers. We had 4/5 of our local support who lives in the same city as us move in a 5 week period. This also happened to be around the start of my foot issues. A correlation of unfortunate timing.

Our local support works, they have to, and are lucky enough to have jobs. I also really want to emphasize that they are our age; dealing with serious issues this young is a challenge in general, to have handled everything that has happened to their friends (us) over the last few years must be terribly trying for them as well; I'm honestly surprised we have not lost even more friends; like the couple I knew for more than a decade, helped keep together during times of relationship crisis, and then when Wash was ill and they were getting married... both of us fell off the map. It ended so badly. I'm still hurt two years on.

So, I am thankful for those who have stuck around and been there, steadfast. I'm thankful for our friends who show up weekly and give Wash a sense of stability and love. I am.

At the same time I recognize that our local group is quite small, and quite limited by age and work. This has caused issues. The conflagration continued with the saga of the Awful Social Worker (ASW) who we have not spoken to or heard from in two weeks, since he stopped by and Wash had to give him the "It's not you, it's me" speech to get him to leave. This has effectively left us without a Social Worker.

Wash's insurance covers 22 hours per week of caregiving (that is not me). That works out to 3 hours 6 days, 4 hours 1 day of the 7 day week. That also leaves 20-21 hours out of every day I am alone here as the sole caregiver for Wash, who needs EVER so much more help these days with everything. This means that for the last three weeks, though I have been wearing Das Boot I have not been able to keep off my feet as completely as my doctor requested of me when the break first happened.

Which leads up to this week, when help arrives, and today, when I had my first set of follow up X-Rays.

There was some expected news and some good news, tempered with some mild hope.

My foot has not healed. In fact, it is still quite weak and broken.

However, my doctor also knows me, and he knows Wash (the office took care of Wash as his Internal Primary Physician) and he knows our situation. After I explained that I was being as medically compliant as I could, without putting my husband in danger, he decided that giving me 3 more weeks in the Boot to try to heal more would be ok. He also gave me a note to pass along to Wash's insurance in the hopes that with some medical backing and paperwork the insurance company will allow for more Aide hours to caregive for Wash while I stay off my foot and let it heal naturally. Or else my insurance (which is the same as Wash's; AHCCCS, the State Run Group) will eventually pay thousands for my orthopaedic consult, hospital stay, surgery, casts, and physical re-hab. Giving me a full day caregiver for 3-4 weeks seems ever so much more fiscally practical, let alone humane.

I don't trust at all my Insurance to make a humane decision though.

Ah, I'm tired.

So many of my close friends are going through some losses of their own right now. I ache that I cannot be there more for them.

I'm also so thankful for my extended friend family, and the Geek/Browncoat Army which has rallied to help raise funds for my friend to come help us and take care of me and Wash, and help me take care of Wash as we move towards what I think is the end.

He is in more pain each day, but so far thankfully each day we have been able to keep it under control and not to an unbearable point. He also has some new worrying swelling in his face/head and some specific pains that make me wonder if he has another brain tumor and perhaps where it is working it's way around in his brain.

He's not playing with LEGO sets too much right now. He got a couple LEGO books and I think is reading them and trying to get an idea to do a project with a mix from his sets. I hope. I hope he is still enjoying them, even on some level. He enjoys less things over time too.

Burgers he still loves, though, and watching Dr Who with our friends. Warehouse 13 on Monday nights, where he still claps at Jane Espenson's name on the credits. Every.Time. Every. Week.

He plays games, like "walk the plank" and some other Pirate themed stuff. His Aides are wonderful and take care of him, clean after him, and play with him when he is awake and has energy for it.

There's a few other things, but I'm quite tired and past the point I might have been trying to make with this post.

Cheers for people who love and support others, be it by phone call from across the country, or bringing over a set of burritos for a terminal guy to eat, or friends buying groceries to be delivered since my broken foot in Boot makes driving impossible. Postcards. Texts saying "I'm thinking of you." So many ways to show how much care, compassion, and friendship exists.

We are rich in friends all over the world, even if our local group is numerically small.

Short Takes VII

He's been sleeping most of the day.

He'll wake up for a couple of minutes, then go back to sleep.

I'm letting him just rest.

He's under the blanket his Aunt made for him.

So far, today is much more calm. No Police, no Crisis Response Team today. No Hospice check.

Just his Aide and me.

I am thankful beyond words for my friends.

Pic is of Wash standing in his TARDIS (bathrobe) before his shower the other day. The swelling from the steroids is pretty intense, but he is smiling.

[Robe courtesy of www.thinkgeek.com Thank you Geeks! ]

I had a terrible day. But, it passed. Today is new.

I am doing my best. Honestly, I am.

Parental Advisory

Nod to my friend L. for this, but, if you are *my* parents or Wash's - you might want to skip over this specific entry.

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I did warn you....

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His brain is getting worse. Either the damage and necrosis from the radiation is spreading or he has a new tumor that is growing.

His pain is worse every day. He's on painkillers so strong they come in an eyedropper bottle with huge red WARNING signs all over it.

He sleeps at least 12 hours per day now. Some of that might be meds, or it might be his fatigue from brain surgery. It might change, go back down so he is awake more, or it might be that sleep is the big time when he is not in pain now, so he does it more.

He lies a lot now (he compulsively lied when he had the first tumor), to me, to his nurses and aides. I don't think he is doing anything "on purpose", but the brain is a weird organ.

He tries to use words, sometimes "big words" and he is not speaking correctly anymore. He can put together a sentence, but it takes concentration and effort to figure out what he means. Sometimes I have to ask him a few times to clarify.

I spoke to his nurse/Hospice team leader today about getting some daily CNA help with his personal hygiene. He cannot remember how to brush his teeth anymore. It used to be with a lot of post-it notes he could eventually remember, but I discovered for at least 5 days he was not brushing his teeth, or brushing them with no toothpaste because he moved it from his bathroom to a kitchen drawer. (Yeah, lots of things like that!) He doesn't like me to watch him brush his teeth, wash his face, (his morning routine) because he says he feels like a child.

But, he kind of is.

So, I'm hoping Hospice or the insurance company will pay to have someone come out and help him with that stuff. He has a CNA help him shower 3 times a week already, so it would just be expanding those "personal hygiene" needs.

I can't really talk about this with him even; there are so many hours out of the day where he just cannot talk/listen/engage on an "adult" level. He doesn't understand actions --->consequences (bad or good). He knows things *happen*, but he just cannot always understand the WHY.

He does not say "I love you" to me anymore unless I say it first; then it is a reflex for him.

He does not kiss me anymore.

I rarely get hugs. Maybe a couple times a week now.

We are growing more distant as his memories start to fade.

I know he still knows who I am, but I know on some days he is confused about WHEN we are in time/space. He thinks it is 2008 or so.

It's harder to sleep in the same bed.

We both used to sleep nude. We're married, it's Arizona and HOT. He's started to wear clothes to bed to help with his temperature issues, and I've started too. It's odd, but I feel less comfortable being nude in my own home, in front of him.

I wonder if I'll be sleeping in the office on the spare blow up bed by the week's end?

I cried a lot last night, when I was alone downstairs with the kitties.

It's so hard to watch this part. It hurts me to see him in a place (mentally and physically) where he expressly did NOT want to be. He said many times he wanted to be dead rather than "living" like this.

It's hard to see him in pain.

It's hard to deal with my own pain, all encompassing.

I try to do as much as I can, as best as I can. It's not easy. I just have to respect his wishes and his wants that he made well known.

I should try to nap today while I have an aide here for a couple hours.

Lately though, my sleep is plagued by bad dreams.

I got 3 hours of sleep last night. Fucking brain cancer.

Hey, Jude

I ended up calling and talking to a Hospice Nurse (on call) for a while around midnight/1am.

He's been in a fairly ok mood lately, but severe short term memory loss. Things happen and his brain just fills it in however he can. He's almost incapable of asking for help now.

He's been eating less and less for the past couple of days. Seems about 3 snack sized "meals". He likes to eat breakfast still; but I honestly wonder if that is not because it is ingrained into his routine; "I have to take pills, I have to wash my face, I have to eat" type of stuff.

I have a lot of good tasty stuff he still can/likes to eat around here. There are healthy things too, but, with what is going on and the Nurse's advice, I'm no longer pushing or reminding him to eat.

It's his body. He is just taking less and less more in.

He spends a lot of time with LEGO sets now, movies, and he's trying very hard to finish a Cherie Priest book. I don't push him or remind him about naps anymore (he had one before TDKR, but I wanted to make sure he'd be awake for the whole movie) and I need to extend that to his food too.

He hasn't been "out" for a walk (longer than front door to mailbox) in a few weeks. He's not strictly bedbound yet, he can still move around some, but he says there is less each day to wake and fight for.

August 6th is his birthday. I know he wants to live long enough to see 28 years.

This part is so hard. Letting go.

I've spent 34/35 some odd months working to keep him alive and happy, and now, my focus has to just be his happiness at the end.

Hospice P. is coming over this afternoon, I've asked him to help Wash dis-assemble his large 4" (diam) telescope so we have more room downstairs for him. After that they can work on Helms Deep for LOTR LEGO.

Thank you to everyone who has been sending us postcards, LEGOs for Wash, and kind thoughts and prayers. Thank you to the few people who have been in shoes very much like mine who have reached out. My heart aches you know this pain as well, but I see the kindness in reaching out to remind me I'm not alone. Thank you.

We got rain yesterday. The kitties were happy. Aelphie has been like superglue next to me over the last few days, and Leto too has been making sure he's not more than a metre away from Wash at any one time. I think they know something is off. Lots more cuddles and more cat hair on everything. Worth it.

I spent three days fixing my filter pump in the big fish tank, then those 3 days spent cleaning out the tank over and over from all the algae growth, the dead fish (2 died. I have not told Wash and he has not noticed.) and the gunk that built up from the pump not working.

Thankfully for now I did not have to buy a new pump, only disassemble it and clean it.

However, sadly, I did have to get a new light-block after ours locked into the "on" setting and would not stop flickering. So, clean tank and new lights for the fish. I keep the decorations for the tank on a rotation so when they get dirty, I have clean ones ready to go and can dry/clean the rest in our hot direct sun.

I also cleaned out the baby tank and transferred over the 3 living fry from the baby "pot" to the fry tank. 2 of them were up and swimming, the 3rd not so much. With fry though, they can be tricky, so I won't think it's dead until I observe it not moving for a full day or being eaten.

Fish-keeping helps my mind sometimes. I'm not getting more, just replacing the few that died, so my school doesn't shrink and die off even more.

Hour by hour, I'm trying.

I'm hoping he will be feeling well enough this week to Skype with some friends and cousins. He's wanted to for a while, but gets too tired before I get the chance to set it up.

One, two, Princes

I've been dealing with my depression lately.

Wash is not strictly "declining", but, it truly does to me seem like there is "less" for him to live for. He's fighting, but for what? At this point he says he wants to still see TDKR. He wanted to see "The Hobbit", but I think the trailer is really honestly all he will be around for.

Brain cancer is so odd. He can complete two LEGO sets in a day, or in two weeks. His brain can still build, but a lot of the other stuff is starting to go.

I have not gotten to the point of bibs yet, but he's essentially using an "adult" sippy cup. His sense of co-ordination is worse even than mine. Thankfully no falls lately, but he's had to be better about using his cane or walker for EVERYTHING.

It helps though.

Our awesome neighbours continue to be awesome. A couple of times when Wash has had an aide over I've gone to just chat or vent at their place. (they are in the same row of townhomes we are) N.* has even traded short stories with Wash to read! She still helps us water our garden and cooks occasionally for us.

He mostly says/does the same thing over and over now. We watch the same show or movie 2, sometimes 4 times before he "remembers" he has seen it before.

"Yes, dear. Thank you. Ok, Wash. Yes. Do go on."

His anger comes in longer periods now too. Sunday night was fairly awful. Even after speaking to a Hospice Chaplain on call, it took almost 2 hours for him to really get a hold on his own emotions.

I dislike feeling what I have been lately. I worry way too much. I wonder if/how happy he is.

I worry about his rage, his pain.

I wonder if the thing I wanted most with my heart on my birthday almost three years ago is something I have to let go of now. I want him to be living because he wants to, not "for me". It's much harder to say that out loud though, than merely to write down.

He's going to attempt to see and talk to his mum this week. I don't speak of his family on the blog anymore at Wash's specific request; he doesn't want some details "out" right now, he still doesn't want to share/show his emotions.

All I can say, all I will say, is please Dearest Readers, send him thoughts of love, calmness, or even kind prayers.

Mostly what he does is say he wants to do something, but with his "drama", it is like there is a block preventing him from ever moving forward.

What I want for that situation does not really matter. I want what is best for him, what his mental and emotional well being needs. Not what someone else might want for him.

Done. Moving on.

So, when he is not taking anger out on me, he's been enjoying some time with his aides and building and filling our home with LEGO models. The cats do not seem to mind, and he really enjoys playing after he builds, it's nice when a couple hours go by and everyone is happy.

I've been trying to take some "mental health" breaks for myself as well, actually get out of the house when I have an aide to help/watch Wash. I know there is worry for me after he is gone. I worry about myself; enough to worry but not yet enough to do much more than starting to see I'll be ok if I leave him for an hour with an aide.

The future is still too painful to think about. The 'What After' part.

I've seen Death. Changes happen to a person.

I'm wondering if it's just brain cancer, or if some of Wash's changes are him moving closer to his end?

So many questions, so much wonder, so little certainty.

To some specific people who have been reaching out to me- thank you. Thank you for telling me I'm not alone in this. Some nights and early mornings it does feel so isolating, but I do try to take comfort from those who have gone before.

The very worst thing to me about GBM? Even more so than knowing at some point I will lose the man I loved and hoped to spend the rest of my life with, is knowing there is still no cure, and there *will* be others who come after who have to fight the same battles. The ACA changes some of that for those Americans with brain cancer, but these tumors hit people around the world, not just here.

I feel like I'm the only one, but at the same time, I hate knowing I'm not.

I would not wish this even on Jan Brewer.

There's a feeling of change in the air; friends all moving, new jobs, new schools, new children/life in the world.

I feel like we are the only ones stuck still while everyone else moves and dances their lives around us.

His birthday is in two weeks. I know (or is it hope?) he makes it that far. Live hour by (hopefully a good) hour, day by day that he wakes up for, and week. At this point, I'm not sure how to think or live farther ahead than that.

/Trying to write my depressive thoughts out of myself today. I hope it works.

*Not real names/initials

Balance

I've had a few more aides around the past couple days to help keep my off my foot and help with Wash.

I've been resting a lot and trying to think about the "next step" with all of this, our lives.

I never heard back from (awful) MSW last week. Or even Monday.

He wants to meet today.

I have to try and be calm, but my inclination is to yell him the fuck out at not responding to my page for him Wed, the 2-3 calls I left Thurs, the 2 voicemails I left Friday as well....

I am not happy with that area of Hospice. Everything else they are awesome. But our most recent Medical Social Worker is just.... patriarchal.

Neither Wash nor I are happy/get along with this guy.

I also spent most of yesterday while I was in bed working to sniff out a (brain cancer) faker. No, I will not link to anything right now, I'd rather not give the person more attention, which is their goal.

The anger I felt though, that someone would fake something so horrible that has personally effected me- it was more than eclipsed when the person was exposed at the very very very least as a lair about brain cancer. That let to a new kind of "vindication" happiness.

Wash has been building LEGO sets. For like, a week straight.

He shows no signs of slowing down or stopping. There really is not much he can "do" anymore, and LEGO lets him build, and pretend, and be an architect again, explore his Steampunk side, and he can happily regress to top! They're pretty perfect for him.

We had a few guests come by, it was nice to catch up with my friends.

I am saddened that everyone else seems to "grow up"; they graduate, they get engaged or married, they get pregnant, they buy a house, they have their first child, move for a new career, GROW.

They have the oppertunities for everything I *can't* have.

I am 25 still.

I didn't graduate, I don't know now if I ever will. Wash and I tried, but 3 miscarriages was the closest I ever came to that "life step". We have so much debt, I don't even dream of owning a house or property in the future.

My life is caring for my husband until he dies.

Then... what?

That's the part I can't see.

I can't imagine a future with *me* in it either.

Lost Tashi today.

/Good news, down to Advil only for the toe pain. Which is ok as long as I'm not standing or walking for more than 30 mins. 2-3 more weeks with a cane though.

Margins

My mum came over for about 30 mins this morning to watch Wash while I got to take a shower.

So far, that's the best part of my day.

I discovered when he used the bathroom last, he locked Aelphie in it- and the one with no food/water/litter box. So, the new $10/each rugs I had to buy to replace the ones Wash accidently covered with his human pee and poop, one was now covered in CAT pee and poop.

I'm attempting to clean it, hopefully it will, before I just throw away another rug. [I gotta have something in there so he doesn't slip!]

While I was doing that, I heard a large THUD and a metal clanging, so I ran upstairs;

Wash was crying and apologizing, saying all the lights in our bedroom did not work, so he wanted to check the breaker box, but when he opened it he couldn't remember what he was doing! And, thus, the tears.

I had him sit downstairs and I took a look- no power outage, he just did not flip the light switch/panel "on". He forgot how to turn lights on from a switch.

That's the kinda day I'm looking at. I have P. the caregiver coming this afternoon- my mum has said she's going to take me to a movie, let my head clear a little bit.

So. Day by day.

Mostly Eidetic

As today is Autism Awareness day, I'm "out" as an Adult with Asperger Syndrome, diagnosed in 2006.

Wash is having a SLOW day mentally, he is calm, but can really just watch things today, he's not that responsive.

I'm open to anyone who wants to (respectfully) ask me questions about living with AS as an adult, and as a caregiver. It certainly adds in challenges.