May Day

May is National Brain Tumor Awareness Month.

Time again to post the first story of how we came to find Wash's brain cancer.
Please Read.

To learn more about Wash's brain cancer, GBM, visit SaveWash 


I'll have a proper update later on.



Share the warning signs. Be aware. Reach for help if you need it, or know someone who does.


I don't want anyone else to die because they were sick and could not afford a licensed Doctor.

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.

Streaking

I feel like I am turning into a character from a Stephen King novel.

It is cold and wet outside; the sky covered in clouds.
I am burying myself in blankets and socks. Also, a warm cat or two to snuggle with.

So much writing. I need a new ribbon for my typewriter. [Smith-Corona Corsair Deluxe portable]
Actually, my online writing is done on the computer, the typewriter is just my old, old friend; I think I got mine back in 1990? Thereabouts.

However, the overall mood, the same themes as are in the books I've read until they became cannon, it feels a bit odd to suddenly be living it.

I don't really want to see anyone right now, no company. No distractions.
My downstairs is finally closer to being cleaned and organized in a way my Asperger brain enjoys and can function in. Part of my brain is already doing the same to my upstairs level, but the actual work there is harder; the bedroom is still the last room where there are things left that he moved and touched and put into place.
It is harder to be 'ready' to change that. Ready, ha. As if such a thing could happen in a human life. Rationality can only go so far, even I could only prepare for some of what was to come.

Cleaning the bedroom changes it. Changes it TO a bedroom. It started that way, when we first moved here in 2008. Once he got sick though, it changed. We slept there, yes, but being bed-bound changes so much. The mood of the room was not the same. The items in it. The sounds. The colours. The photos and objects on the walls, even.
It was a place of sickness, even by accident. By proxy.
Now to me, it still holds the strongest memories, and the majority of my reluctance to change it.

Words and thoughts, even lucid dreams rob me of any real 'rest'. My thoughts have become a perpetual motion machine, spinning ever forward and back. Flipping between some social order of "normal" to be outside of my house and in social situations, to hysterical uncontrolled laughter at something that I find funny or he did. I hear his voice less in my head, but a stronger compulsion to 'talk' to his TARDIS urn.
I miss his body, but in strange ways. I just miss how he felt pressed against me. I miss having my head and my ear line up with his heart when we were physically close. I miss kissing the part of his neck where it met his hairline. I miss how his ears were always cold, even in the Arizona summer.

Mostly it comes at night, when I am alone in the bedroom-that-is-not-a-bedroom, sleeping in a bed that feels half empty.
It is different because there was no choice involved. He did not choose cancer. He did not choose to die young. He did not choose to have a tumor remove his memories and change his being.
He only chose how to live.

Busy days help me. Busy days though, cannot keep out the thoughts. The questions.


The world is so open to me, but the person I want to share everything of myself with is gone.

Is it still a desire if there is complete certainty it will never happen?

01.20.09

I've been awake for about an hour.
It just hit me.

The last time I saw this, the last Presidential Swearing-in, Wash was still alive. We were watching history being made together, and how excited and happy we would be to tell our children about getting to witness that day.
We were about 6 weeks away from getting married.
Wash was in school, and had a "brings in money" job, and a better one lined up after we got married and came back to AZ.
I was still working full-time. I saw myself being able to go back to school to finish my own degree in a year or two from that point.

Neither one of us thought in any way, at all, that he or me would not be there just 4 years later.

We thought that it was the start of a new wave of Hope and Change, but it turned.

4 years ago this day, we thought anything was possible.
Now, it's just me.

One "term".

I'll most likely be crying a lot today.

Brave (2)

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

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

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

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

It breaks what is left of my heart.



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

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

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


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

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

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

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

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


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


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

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

That last part was a bit sarcastic.

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

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

So much pain and sadness.

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

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.

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.

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.

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.

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.

Songs from an American Story

I wake up Wash this morning "Outside!"
"Wash, you can't go outside, it's hot and wet right now. You need to take your pills first."
"No! No wanna go out! The... the... stuff, the outside stuff; our FURNITURE! Is it gone?"
"What? Why would it be gone?"
"It's a YES OR NO ANSWER TASHI, IS OUR BACKYARD STUFF GONE?"
"I don't understand why you think it would be gone...."
"THE STORM. THE STORM TAKES STUFF. DUH, TASHI."
He goes and looks out the window.
"SEE??? You could have just said, 'No'." [everything is EXACTLY where it should be outside]

I just... what?

Waiting for his meds to kick in and the Hospice nurse to arrive.
How's everyone else's morning NOT dealing with brain cancer?

For reference, nothing has EVER gone missing during a storm for us. The umbrella gets knocked over, but nothing

goes MISSING. And I took down the umbrella earlier.

I'm wondering if he thinks it is Summer 2011 when we had our things STOLEN from the backyard?

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.

Frak Cancer kind of day

Every day when he wakes up it is a new challenge.

Lately he just forgets he has cancer, he is sick, he needs help.

He tries to do things, most of the time just making a bigger mess or destroying what he thinks he is "fixing".

He thinks he has a job. He can't remember what he does though.

He thinks he is starting school soon; he's not.

It takes 30-90 minutes for him to really notice and remember what is different, what is changed now.

To get him to agree to take his medications...

He feels horrible without them, but his brain doesn't always remember he is sick, or that he feels better with meds. It takes time for him to recall and that time is excruciating to wait for him to take his meds and feel better.

Mornings are pretty awful these days.

Updates

Short update, I'm hoping to be back to write this afternoon.

It's rained twice this week! Not enough though to save my garden; only some of my wild Basil is still alive. It's been too hot, too sunny since we lost a neighbour's shade tree, and with my broken feet I have not been able to get out to water it myself.

Sad.

I'm not sure if it's relate to the weather, but Wash's pain has been increasing almost every day now. It really started to get bad about two weeks ago and now it's every hour or two that he needs meds to keep him going.

When he's not in pain, he's able to enjoy reading his LEGO building books (thank you Mark and Dayna) or to build/play with his LEGO sets.

He's been watching some older series too, things he says he can't remember anymore. His short term memory is declining as well. He needs a lot more help with the little daily things, and many many more reminders.

I have to be patient with him, and I'm not always. I could be better.

My foot is still quite sore and bruised from falling again this week. Gorram cats. I don't think I broke anything new; there's no new swelling. I'm getting another x-ray in about two weeks, so unless it gets worse I'll just wait. I'm trying to keep off it as much as I can and DAS BOOT it up if I have to stand or move about.

We had another Eval or two and Wash has gotten to the point where we will have a daily Aide coming over now to help. As of this month (or, the next 2-4 weeks unless it needs to change) we'll have an aide here now daily for 3-4 hours. That will help with some of the daily house needs, at least one meal that someone else can prep for him, and give me some time every single day to rest myself, a novel concept.

Wash also gave the "It's not you, it's me" speech to the (awful) Medical Social Worker. Hopefully we can get a new one (been trying for months) but at the very very least the MSW is aware now that we need someone who can take or return our calls, doesn't take vacation days in the middle of the week or take holidays without telling the clients (us), listens to Wash etc. Tried to be clear that it was not a "you are at fault" situation, but more that the MSW is not meeting Wash's NEEDS, and we need someone who can.

I am hopeful at this point.

The MSW is also working on a grief counselor for Wash too. He really needs to talk to someone, he's so scared of the next phase to come.

Let's see. Our main school in the big tank of danios is down to 2 males. We had 6 one day and one died. I took the dead one out and the next day instead of 4 fish, there were only 2. I never recovered the other bodies. Cannibal fish or a smart wet-pawed Leto, methinks.

However, before the massive die off, I did recover some fry. We have 3 fry in the baby tank now slowly growing into big fish! Can't tell their colours yet, but they will develop as they grow.

My mum helped out a bunch this week and did errands for me, so we have groceries and mail and bills paid. Hurrah! (Step) Dad made Shepherd's pie for Tuesday Dinner night this week; the leftovers might make it to tomorrow even! It's so good it rarely makes it more than a few days before someone in this house eats the leftovers.

Wash and I continue to thank everyone who keeps sending in Lego sets. He plays and builds them. Speaking of thanks, I need to get to work on his birthday thank you notes. Obviously he cannot do them anymore, so it's just another task that falls to me.

I can't even recall what else I wanted to write about. I've been trying to get some of my own rest and recovery in, and doing a lot of watching him and trying to treat his pain. Some days/nights he refuses his medication; sometimes just a couple hours, sometimes longer. He just gets so agitated and then confused and his confusion blocks him from being able to take meds, or calm down.

Brain cancer is pretty fucking awful.

I'll have more later. We're both still here, still alive.

Eye of the Storm

Wash had some severe pain this morning.

Literally screaming, waking me up.

Hospice had his nurse talk to us and he got pain meds. They did help. He had almost a full breakfast and a snack.

The nurse checked in again this afternoon. It could be a side effect of one of his meds, but perhaps not likely as nothing has changed in about 2 weeks.

He had more pain medication in the afternoon when he started feeling the stabbing in his joints again.

He's been asleep now for about 2 hours. He said he was feeling (after meds) "I don't hurt, I feel warm and fluffy."

Aephie is catloafed at Wash's feet on the bed. She and Leto have been taking turns today guarding him.

I'm going to try and get a short nap in today. I have a horrid feeling I might not get much sleep tonight.

He had to put the LEGO building on hold for a little while, moving for him hurt too much.

Hospice is being great right now.

I am very, very tired.

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