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.

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.

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.

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

JTOP gets a Shoutout

Wash had a tough week. He was very much himself, which can sometimes be painful for me; he knows how far gone he is, how much he has lost.

The up side to that is he was feeling in control enough to finally go see "Brave" tonight.

It was lovely. We went with a college friend of mine and got to catch up with her for a while after the movie too. We might start meeting weekly to chat and catch up.

My morning was hard. I was crying a lot and trying not to sink into a real depression. Since Wash has been more "present" he asks me a lot of things that make him sad; and me too.

It was a wonderful blessing to get to go out tonight.

We had a packed small theatre, but the kids were pretty well behaved. More so, the parents were super attentive to their children and kept them quiet and were very careful to not interrupt or disturb the other patrons when they had their 6-8 potty breaks. There was even a baby; but ze slept through almost everything and when ze whined a little bit, zher mum took zher right out so as not to disturb anyone else.

Perfect way to do it.

Wash was dancing in his seat the whole movie through. He bumped my broken toe a couple times on accident, but I just dealt with it.

The good part for me was the way he would reach over to hold my hand during the movie. The way he squeezed it at the few scary/dramatic scenes. His smile at the end of it. Then, the best part; during the credits (of course we stay for the Easter Egg!) Wash spotted the name of a Pixar worker he knew and acted with back from the bay area. Apparently, he also had his nickname in the credits, which made Wash literally stand out of his seat and "Whoop" in joy for his friends' success.

That's the kind of person Wash is; he cares and he loves and enjoys seeing his friends and family succeed and be happy.

We came home and saw some friends sent him 2 more LEGO sets. Now he has some Ewoks! He really does adore those blocks, and they do seem to help his cognition. Double happiness.

I started my day with 90s music, good comedy, and Phil Hartman to stop my tears.

I'm ending my night with bagpipes echoing around me, a huge smile on the face of the man I love, and a feeling of love and friendship in my heart.

Hope comes in many different forms to me.

I'm starting to feel some again.

You have a Friend

Ignoring the pile of bedding and the apparent crappiness of this quality, Wash is LOVING the LEGO sets.

Please send more LEGOs he says.

.... he was *this close* to being an architect graduate. He HAS to build. LEGOs are safe. We're all happy.

Longer post to come later, it was a long night; Wash had his first ever nigh terror (with me).

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.

Both reached for the

I have a hairline fracture on my left foot; right along the line where I have broken the toe before.

I think if I had not broken it in the past, it might have just been a bad sprain.

So, I'm supposed to stay off the foot as much as I can, no taping it- still too swollen, but ice and elevation.

3 weeks of a cane or crutches and it should be fully healed 6-8 weeks.

Thank you to everyone who is sending us love, postcards, and (for Wash) LEGO sets. He LOVES them. (Thank you!!)

He's playing with them now, much calmer and happier.

Last night was something truly terrible. This week has been a challenge for him. From the cat incident, to the falls. He just got SO ANGRY that the people around him can't "cure" him. That he won't get better. This is in his brain.

Seemed to just hit him all at once, and he just overloaded with anger and sadness and depression.

He would not take his medicine. He would not calm down, he was restless.

Said I needed to keep the cats upstairs because he did not trust himself around them or me.

We slept apart. It doesn't happen often in our marriage.

Hospice said I had to try to respect his wishes as a patient, because he was so clear and mentally present at the time, to be alone. To let him be downstairs without me watching him. He has a right to not be "safe". It's a hard thing for me to get used to, but they are right.

It was not easy to sleep without him by, wondering and worrying.

He was better in the morning. He wrote some last night, and also yelled for about 2 hours while he was downstairs. I have no idea if he was conscious he was speaking aloud, let alone yelling.

I got my X-rays this morning, he had S. as his aide/caregiver. Also gave me a chance to get by the post office to pick up some nice Star Wars LEGO sets that were sent to him. He will offer up to the nurses, "I know I'm regressing, but it makes me happy, and they're just so FUN." At this time I'm not worried about him choking on a piece, so I don't mind a million pieces around the house because he enjoys being able to still create and control in his little LEGO-land.

He needs that, and I'm glad I have the help to give it to him.

I do have a script for painkillers for the next little while that my foot feels frakkin' awful. I apologize if this later makes no linear sense.

We're going to watch "Treasure Planet" tonight, Wash has actually asked me. Like he's taking me on a "home date". I'm going to do my best to stuff down my emotions and show him I'm enjoying it, even if I'm in pain. He doesn't really understand anymore that other people hurt and feel physically and emotionally. It's all about him, all the time. That's ok. That's brain cancer.

But, he won't understand and doesn't understand when I tell him "No, that hurts me."

So, I have to smile tonight for him, because he needs some love and a memory of a smiling wife.

Rise above the pain to give him that.

It rained last night. I had a hibiscus blooming this morning. I hope it helps the tomatoes and the watermelon plant. It will be a little bit before I can water my own garden again.

Hastily Fortified

Wash had a REAL bad day yesterday and memory wise a shit week. He has moments where he knows who he is/the cancer et all, but most of it seems to be a 27 year old turning about 6.

He doesn't remember Sept 11th. He remembers something happened in NY/the towers are gone, but the event itself he cannot recall. [We're watching a mix of OLD Simpsons lately and some shows from the late 2000s [2006+]] He forgets names every day, even the Hospice folks he sees weekly now. He's not even writing anymore, he'll read a little, play with LEGOS and toys and rest/sleep. This, on top of his confusing Aelphie this week for his old (dead) cat, Max.

A lot of the time, it's hard for him to speak clearly, especially when he gets more excited.

I don't bring things up with him anymore when I notice this, just file it away. I think he doesn't notice, I have to hope he doesn't notice losing himself every single day.

I'm still hoping he'll be feeling well enough to see Brave this weekend. Maybe.

Watching him die hurts. I'm thankful he's mentally mostly gone though.

So, that's where I'm at.

I wake up every few hours to see if he's breathing. I don't aim to do it, but I'll just WAKE and have to check.

Security

Some good news;

AHCCCS and SNAP benefits will continue! Apparently we ARE still broke, sick, and dying! It feels so odd to celebrate retaining our health insurance.

I also got my new glasses today. They are my first proper prescription in about 4 years (Thank you for the donations to help me SEE) and fitted for me and my eyes.

I can bloody well see. I can see details, I can see things without glare, without light halos.

Also, my house has SO MUCH DIRT and clutter. Before, it was all just kind of a group of gray lumps.... ugh. It's going to be hard not to clean too much and confuse Wash.

He's having a better day. Still a lot of memory loss, but it seems to me like he's forgotten his bad days from earlier this week and his severe depression seems to have eased. Though, it is still daytime and some days he is fine until sundown/sunset. At least in summer now he will get a little more light/sun. I managed to get him out for a walk at night when it was cooler a few days ago- he's gone from a walk every other day or so to around once a week now.

His muscles are going to atrophy soon. I try to convince him to move, but some days he doesn't have it in him.

If he doesn't remember I am not going to bring up his bad days from this week. Better he doesn't remember the pain or sadness. I can hope he can just move on past it.

I have had a nice few moments with my husband, a few chances for some (perhaps, last) memories. Emotionally, it's like taking a bowling ball to the stomach, but I have to focus on the good few minutes that happen, those quiet times where I can remember the man I fell in love with, or even remember more about myself, who I was.

I have to try every day to make it all count.

DAWN works

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

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

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

I'm wondering where and when she will RagePoop.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Posts at 1am

Wash has had Xanax and Ativan up the yazoo. He was ok for the two or so hours our friend J. was by tonight.
Then he got super angry and depressed again. He cannot remember so much of the short term stuff, and he was angry at himself- and yelled at me.
He asked for the Chaplain to come, it'll be close to 1am when she gets here. He says he's getting "Ready" and doesn't want to "pain me or talk about it with you".

I'm trying so hard to not cry right now.

I brought him some wood blocks and Legos to play with, because he was asking what was "safe" that he woudn't harm himself with.
The Hospice Nurse on call said she hoped it was a bad night, but that these intense changes, and his night-issues might be his way of trying to say he is ready to die.

Fuck.
NOW I'm crying.