Complete the Circle

"Everyone goes through hardships. The challenge of being a person, with compassion, is to pass that help along to the next person who needs it."


Friends, you all have done so much for Wash and myself.
You've helped to keep us in the home he wanted to die in. You are helping me to stay here right now, where I can still feel Wash around me.
You've helped us pay for food, and medicine, and cool air in the 119F heat of summer.

You helped buy clothes for Wash when the cancer changed his body shape, more than once.

Right now, I am living off of your generosity. When Wash died, our small Disability stipend stopped, so it's literally your kindness that keeps me in this home now, helps me to get food, to visit the doctor and get meds to help me cope after Wash's passing.
You are helping me to have the funds to have the memorial for Wash he did want.

I am so thankful for all of you.
I have something else to ask my readers.

I'd like you to smile right now. Chances are most of you have your teeth when you do.
Think of your morning routine, think of waking up and brushing your teeth, brushing them before bed.
Think of every smile you've given before a photo was taken of you. Yes, even the ones where you may have had braces, or a gap, or something in your teeth.

Now, I'd like you to think about my friend Mary O who cannot do that.
Like Wash, she faced cancer. Unlike him she's still around to fight. But it has cost her greatly.
Mary is in her 30s and does not have teeth. She's gone through surgery, and radiation. She has fought.
Medical Care in the US is something I could, and have, written other blog posts about.
But right now, Mary needs some teeth.

So, my friends, I'm asking you to think tomorrow when you brush your teeth.
Think about your $3.00 tube of toothpaste Mary cannot use or buy.
Think about your $2.00 toothbrush she does not have the luxury of being able to use.

I'm asking you, if you can, go to the link. Read her story. Think about your own smile; could you put a value on it? Think about taking the $5.00 you might have spent on your next toothbrush or paste and donating it so Mary can get some teeth.

As always, thank you for helping me continue to learn to Hope for Humanity.

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?

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.

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.

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.

The Note

Family and Friends,

It's been a little bit since the last real update on Kevin past his entering into Home Hospice Care this January.

It's been a rough few months with many new challenges, but also quite a few wonderful moments, new memories for us both, and a wonderful outpouring of "geek" support for my beloved Browncoat.

Kevin is having a lot more issues right now, which is the nature and course of his disease. Before he went into Hospice service this year he had made it well known he was not interested in more chemotherapy when his brain tumor(s) came back; he wanted the best and happiest quality of life he could have for as long as he could have it. I have done my best to honour his wishes and with some wonderful support from around the world, I have been able to keep him at home and mostly comfortable. He does not consider this to be "giving up" or "not fighting"; he is working with his grief towards acceptance of the end course of his disease. Please know that the intent of this message is only to give you the opportunity to get some closure both for Kevin and for yourself. To give you the knowledge and awareness that despite our best efforts, an immense amount of prayers and well wishes, the love and support of our family and friends, and the best advances that medical science has to offer, he is not going to get "better".

We are losing Kevin, day by day, and the course is set and tragically unchangeable. I would have you know that, and have the choice about how you would like to handle saying your goodbyes. We also want to pass along that the window for saying your goodbyes is starting to close more quickly now so if you wish to visit or call or write, you should immediately start making those plans. Since stimulation has a direct line to his exhaustion and fatigue please take directly to me if you are out of State and would like a longer visit (over a period of a few days).

I am asking those who are local to try if you can to come for a day/evening visit or even a phone/Skype call. He is still able to enjoy things, and his personality still shines through on most days; but he is having more days where he does lose "himself". This is common with brain injuries/cancer. He may recall you and every detail from the last time you were together, but also be aware he may not really recognize you or how much time has passed between events. If he is not upset over this, or seems to be in a time period from when he was younger, that again is just part of his disease. For now we suggest day/evening visits be kept to 1 hour or less, unless details have been discussed with me prior. Some days he may like to go out for burgers, or to see a movie - and he has a wheelchair if he needs it on those days, and others he may just enjoy a short game or talk at home.

I will do my best to address any questions you might have.We both thank everyone for the continued kind thoughts, wishes, and prayers.

Tashi Pratt-King

Please visit www.savewash.com for more information on Kevin and Glioblastoma Multiforme brain cancer.

Tashi's journal 13:07

I wish I had something more to talk about than brain cancer. Than watching my husband lose himself, his memories, his personality; and am left with a shell. An angry shell.

He's spent the morning calling me a "bitch" under his breath. Not even honestly sure if he was aware he was doing it. He cried, "I miss my wife! I don't know who you are, you're not *my* Tashi." He recognizes me, but I am different. I've physically changed in the last 4 years, and a lot emotionally too. But, he wants Tashi from 2008- and he wants to be the Wash from then too; without cancer.

It's hard and fuck awful.

He said there was more I could have done. "You could have played with me more! All the times I was watching tv with you, you were letting me rot instead of playing with me!!"

Not exactly true. I don't want to play with him, I can't- everything he wanted to do was in terms of "killing" the other person in the game; and even pretend I can't play or RPG when the goal is to "kill" my husband! Before cancer, sure, but post?NO FUCKING WAY.

Also, he's non-responsive! Most of the two years he was chemo sick, too tired to even speak to me let alone play a game or communicate what he wanted to me.

I brought friends in to play with him. He got 1-4 games a week! Just not against me, and I guess to him, that's what counted.

I have played with him. It just gets hard to want to "play" with someone who is acting like a 4 year old when I also have every single responsibility for two full adults to do as well.

He can't see how hard it is on me; mentally, emotionally, and even physically to care for him, to care for my dying husband. To watch the person I should have had 40 more years with die before my eyes, and have his personality and memories stripped away first. He just sees me pulling away and hates me for it.

He doesn't, he can't see that I have to give myself space, I have to let myself start to mourn NOW, or else, there will be no reason for me to stay alive when he dies.

Revolver

Mornings seem to be the worst. No matter how I wake him up it's never "right". Then, he tries to "make the bed" and always gets mad when I re-do it properly behind him.

I love my husband, but I also love my bed and nice sheets. I love them to be proper and in place, and clean- no berry jam spilled onto them.

He does not always agree. Then again, Wash was not the one who worked for two years solid to save up to afford a nice proper adult 30 year warranty bed. I did. It's a bigger investment than any of the cars I've had. I've had insomnia since I was 11. This bed was the first I've slept on to make me like sleep and even WANT it.

Beside the point. Mornings are bad. He doesn't like to be woken up, he hates me watching him take his pills (but he won't do it otherwise), he hates being told to wash his face and brush his teeth. I take no joy in asking him to do it. He thinks I do.

It's hard to watch my husband, the grown man I married suddenly revert.

Things get so much harder for him.

Unlike toddlers who need help, but learn, he needs help but never is able to learn. He cannot remember new skills! That part of his brain is just gone. I get no joy from the help he needs. The only relief I do get is when he asks for help; when he's present enough to know he needs assitance, and asks for it. That's rare though, most of the time he is not cognizant enough to really understand he might be having issues.

Hospice folks say to try to let him do things on his own, when his safety is not at risk. BUT, even that has a downside, as most of the time I either have to correct and do it properly or safely behind him, or even just clean up. He gets so angry at me, because he cannot do things anymore. He's really angry at himself, or even the cancer, but because it is still just me here caring for him 98% of the time, it comes out directed at me.

The other issue is my own brain. I have Asperger's. It's difficult enough to try and cope with all this emotional shit poured on top of me, and the stresses, but I have no space. I have nothing that stays clean- he gets into EVERYTHING. I have made compromises on everything, my house is far more unkempt and unclean than I would EVER prefer, but I can either watch Wash or clean, rarely both. He comes behind me and messes things up again anyway.

I'm hoping he can stop trying to make the bed in the mornings. Or, at least, not be angry with me for going back and fixing it.

It's a hard balance between what can help him feel less frustrated and what I need Aspie and OCD wise to be functional.

The first hour or so that he is up seems the hardest. He's confused, angry, and needs structure outside because his own brain cannot structure things for him now.

It is hard.

Brain cancer is a nasty evil.

Looking for Bat Country

It's been a hard week of truths for me.

I've had some good long talks with Hospice, and some friends who have literally been in a similar situation with brain cancer.

I've been holding myself trying not to fall into a depression. Trying not to lose the functionality I still currently have. I feel so tired, so much of the time. A deep exhaustion.

2009 was the scared shit year.

2010 was the year of fighting, chemo, and insurance pains.

2011 was the plateau. Was the "holding pattern".

2012 has changed. The way things work, the way he thinks, changed.

He's not going for more chemo. He made it very clear a long time ago, he could not face that fight again. Losing so many days to chemo, sickness, fatigue; for something that wouldn't raise his Quality of Life.

But, that part is hard to focus on, even though I remember when it's now in my face. When the inevitable has started to really happen. As much as I appreciate you, Dear Readers, this is still a way for me to talk to myself, to preserve these thoughts. A record of Death.

I don't know how to tell the people who are not around him so often how he is. I don't have the words that dull the sting. I live it, every moment of the day; but telling the other people who love him and care; so much so it hurts them more to see him like he is than stay close.

I just don't know anymore; I don't know what he wants. It's so hard for him to really grasp a concept to be able to articulate his desires and needs now. My biggest worry and fear is he is no longer getting the comfort he wanted from living with me.

I am so tired, but so guilty that I'm not doing "more". I can't even begin to know what "more" even is, but I still feel like it's not enough for him. I'm not doing EVERYTHING I can to make it more "fair" for him.

I've cried a lot this week, perhaps more than in the past month combined. It's terrifying to feel like I'm really losing him again. I have flashbacks so often to 2009 and the summer and the tumor, and how scared, how perpetually frightened I was then. He wasn't working and my hours were part-time. Money was always a worry. We were fighting over stupid things and I just did not know why. He was withdrawn, angry. He was no longer laughing. It was dark. I remember our huge 4th of July fight. I remember wondering if, on the Thursday before we found the tumor, I would end up divorced before a year of marriage that know one even knew about?

All of that keeps coming back.

Some days he feels/remembers/thinks he is in a time around 2005-2009. He's vaguely aware time has passed, but it's such a hard concept for him; time.

It's so weird, and so painful to see his brilliant brain doing this to himself. He knows me, but not always who he is anymore.

He has not been my "husband" in a long time. He cannot even remember to say "I love you" to me daily. It hurts, but I try to keep the pain down, like a bruise. The scary part this time is not that we don't know what's going on. His medical team and I are fairly sure there's something going on again; most likely another tumor(s). Since he doesn't want "treatment" there's no point even checking right now though. Schrodinger's Tumor. Better to just not be imagining what is there; to be unawares, and he is.

There's the smallest kindness in that; I don't think he is very aware at all just how much has slipped away or that there might be a tumor. Well, I guess today he was talking to the SW and thought he was back in 2009 and knew he had a tumor, but didn't know it was removed.

He gets a lot of details confused.

I knew this time would be coming. I knew from the time he went into the ER and I saw his CT scan. I knew from the Oncologist, the Radiologist, the Neurologist, and the Hospice team.

I knew it when we would have talks about his wishes, and I knew it when I had to ask for the urn to be made.

But, facing the end, it's hard.

I know statistically if there's another tumor and he doesn't treat it will be a couple weeks to maybe 3-4 months.

It's hard to think past tomorrow, maybe a few days from now.

I keep feeling these conflicting portions of myself scream out that I'm both way too young to deal with this pain, this heartbreak, this loss, this responsibility, I also feel so so so old, so aged, so seasoned to certain ways of life and Death.

The Social Worker said it was nothing he felt I had to address today/tomorrow, but he'd read next week or help me write.

It's terrifying having to be so strong.

I'm thankful for the bit of local, physical support I do have, but I'm trying to be open and vocal about needing more.

Things and times I truly believe will only get harder from this point on.

I keep wishing I had my best friend, my husband with me to give me strength.

Terminal brain cancer in a 25, now 27 year old; it's unfathomable cruelty to watch.

But which one sings?

It's been a busy few days for sure! Monday was one of the best days I've/We've had in weeks. Wash was VERY present. He was himself, he was nice and sweet and even though physically he was not up for much, I got a good cuddle in with him, some nice hand holding and really, just some good moments with my husband.

Then, most of him left again. He tried very hard this week to compensate, as his parents were in town for a couple days, but he was looking for brain and energy that did not exist. He needed some long naps, a lot more Xanax this week, and more patience than I had.

Caring for my 27 year old physically, but mentally .... not, husband is a lot like a grown human's body, the endurance of a newborn, emotions of a 4-6 year old, and the memory of a 20 some odd year old. It's a lot.

He gets mad at me when I have to explain something a few times, or phrase it differently so he understands. He is cogent enough to know he doesn't understand, but not enough to really grasp what he knows he has issues with.

I think it was hard for his parents to come and really SEE him this time. I'm glad they did, he is too, and happy he was able to be honest for the most part with them. I'm personally sad, I am not sure if he will have the relationship with his brother he wants, but on that; Wash's bro wants a (probably, I'm not Wash, so I can't say for certain) well deserved apology, but Wash is NEVER going to be able to do that. He doesn't remember they fought, let alone what over! Any apology is truly meaningless. But, I don't know if Wash realizes either that his brother has to work through things as well and "just because" he *is* dying, it does not mean that everyone he wants is going to be placing Wash as their top priority. As sad on either part as it might be.

But, Wash was able to say some things, his parents were as well, and my personal hope is that all parties have begun to move forward again towards acceptance.

All the rest is just drama that pisses me off, and I've had far too much of that this week.

Thank you to the several awesome folks who have sent us Girl Scout Cookies. Wash's steroids have been up for a few weeks now and he is MOST appreciative. I have a nice Thin Mint stockpile which should last me through the summer and winter. Since we're in AZ a wonderful treat I've loved for decades is freezing Thin Mints and having them out on the porch on hot summer nights when the sun goes down.

I've been hard working in my garden to make sure that option will be a nice one for Wash this year. My fruits and veg are doing great, with the exception of the melon which is not taking. Boo. However, lots of bean and peas, lots of carrots, tomatoes, my strawberries just starting to come in, so we have a few ripe once a week or so. I've got all my solar lights up, and at night the flowers look great and it usually smells like basil and wet rosemary now. My gardenia has also finally gotten over transplant shock from Dec and the first bloom opened this morning! I love the fresh smell, bringing the blooms inside.

Wash has lately begun to spend the mornings outside with me and while I water, weed, and garden he usually takes Leto out to play with grass and he has begun to "read" the daily newspaper. He asked me last week to start getting the paper; it's too hard for him to try and keep up online with the news now, too many distractions. So he kinda skims the paper daily, and if he seems something he wants to read or know more details about he asks me. I have noticed we do have some more things to talk about, but there is so much bad shit going on, Wash tends to get angry like me at certain news.

I try to check the news the night before so I know if I have to censor it. He's asked me to remove traces of a few things; some certain architecture things, anything to do with Taliesin/West, and Earthquake reports by his hometown in CA. Not a large list, but we've learned from hard lessons those things will trigger the shit out of him, and he gets very depressed or worse. It's a little more work for me, but it makes him happier.

Mornings have turned for us as well, he needs to go VERY slow, and usually needs some other help to tide him over for the hour or so he is awake before his pills kick in. I have to have extra patience during this time. He's not fully awake, aware, conscious. But, he tries to be. There's a lot more work for me every morning. I want to try though. I have to try.

His Hospice check-outs were pretty good this week. He is having some medication side effects now, he does have the standard "Chipmunk" steroid face. A few people had mentioned to me he was looking swollen, but I thought it was just his winter beard left over (see pic from Sunday). However, he shaved down Mon and Wed and as the photo above shows, it's not beard, he just has more swelling. He is slow GI wise, but still normal, though he is physically changing; his legs are getting skinnier and his muscle is wasting a bit. His belly and chest are getting more barrel shaped though; meds and just the inevitable path of cancer. He's still not eating like he was last year, but he is eating a little bit more on a daily basis. It's hard for him. He forgets he is hungry easily, and he won't eat unless he is being helped and reminded. He can feed himself, but he won't remember to eat on his own. That's hard to watch.

I will put this out; if anyone wants to contact me to help me get him a properly fitting UtiliKilt I would be beyond grateful. He loved his UtiliKilt from the day he got it, the day he was married in it, even some of his early chemo sessions he went in it. But, starting around last summer, he lost too much weight and could not wear it, then gained it back/ had it go to his belly. His old one does not fit anymore. It's what he wants to wear when he has a Living Wake. Should I try and see if the company can alter it for him? Get a new one at this point? Any advice or help I would love.

Also, in the photos above you may notice a new kitty; the kind, awesome, cool, inspiring, (positive adjective) folks at www.thinkgeek.com sent Wash a singing "Soft Kitty". We (ok, me.) named her Zazzles. We are in agreement she's a girl. Wash calls her his "Soft Kitty" though. Leto is just in LOVE. He keeps snuggling up to her where ever we place her on the bed. She's about Aelphie-sized, but unlike big sis Aelphie, Zazzles just sings. Does not hiss or try to fight Leto. He even fell asleep on her last night.

We're both pretty darn happy, and I am very thankful for the kindness; I smile when I see him cuddling his new plush and happy. So again, thank you.

I know there's more to catch up and talk about, but Wash needs me to cut a bagel for him.

Thank you, Dear Readers. Always.

Acute

The pain in my heart is intense. It is overwhelming. Tears keep smearing on my glasses, but I can't write without seeing. Too many typos.

I did something last night I regret. I don't often have regrets, really never, so this hurts like a new kind of pain I'm discovering. I feel used. I feel like I have not in years and years. Dirty. Bad. Selfish.

I allowed myself too much hope last night. Too many thoughts and ideas of what Once Was, not what Is.

He can't even keep his days right anymore. The first thing he asks me when he wakes up now is no longer "I love you. I'm happy to wake up next to you" sort, now it is, "What is today, Tashi? What do I have to do? Am I seeing a nurse or doctor today?"

Physically he has sometimes 2-4 hours in a day where he is or can be active. Usually about 2 hours at a time. He sleeps a lot, and watches a LOT of movies/streaming stuff. With his memory issues he's finding it harder to watch TV with commercials, by the time the show is back on he's forgotten what's happened. Watching on DVD or streaming helps with that, he can keep his focus better and enjoy watching.

I try to read to him when I can. He asked me the other day to start getting the daily paper; getting news from blogs and sites is too confusing, so he wants to just look at the paper. He has not kept up with the news in years, I fill him in on the topics of the Daily Show and other things, but emotionally he can't distance himself; it's why I stopped reading him news years ago about the Affordable Care Act, or other AZ laws that have been enacted in the past few years which literally can kill him.

It hurts. I had a moment yesterday to stop that hurt. I took it. I regret it.

I feel like I've cheated on my husband and the man I swore to love to his death, with I'm not even sure. Who ever is wearing my husband as an Edgar suit right now.

I wonder if there's another tumor hiding in there? Eating up my husband, my love, and leaving this poor shell that doesn't even know he is being hollowed out.

He lives Groundhog day every single day, and only barely knows it. It hurts to watch how far he has come down. It hurts to see him give up the things that made him happy because they are just too dangerous or he can't be trusted to properly supervise himself. He's in an Adult body, but he cannot take care of himself. In any real way, he can't.

I know he has Hospice folks in almost every day to check on us. I worry they don't see what I do. They are not here 24/7 and don't always see him fall apart- lately he's been letting help in so they can. I worry since Wash is able to project himself into some level of "normalcy" for sometimes an hour at a time, people don't believe me. They don't see how much he's lost of himself.

Then again, I can't keep my own house clean anymore- not and watch him- I am falling to pieces, and I wonder if they can see that he cannot help. He wants to, he does! But saying you are going to do something for 5 days in a row, staring at it, but not doing a thing.... this is what he does. He cannot be honest with himself or with me. That hurts so much.

I could make provisions, I could make plans, I could ask for more regular help if he would be honest- first to himself and to me. But he cannot. He cannot see that what he says he never does, he has no follow through. That's the cancer. I don't know if it is cancer or Wash though, that does not want to face the truth, or even hear it from me.

It's a sharp Guillotine above my head. He was once an adult who had a complete brain. He was a genius. Now he cannot remember what day it is. He's 27. I infantalize him for safety, win/lose. I treat him as an adult and spend all my time fixing, repairing what he's messed or broken win/lose.

Either way, it is painful for me, and then I still have a blade rushing towards my own head.

Too many tears.

Sighs

I let him sleep in for more than an hour today.

Did not help. He woke up physically rested and feeling "strong", but mentally he is off today. He has control issues and keeps showing some obsessive behaviours. He's picking at parts of his face and back and is getting to be a bit bloody. I'm going to speak to his nurses, I can't make him wear gloves every hour. I'm also watching him a lot closer, which takes away any real chance of "free" time for me, I'm stuck being close enough to him to make sure he doesn't dig a hole in his body.

I know it is not him, not my love. This is a side effect of his meds, or scar tissue, or something else. I can still hate it though.

He's so negative and nasty. He thinks he is being funny or clever, but he is just being a horrid human. The things he says... sometimes he is aware of them when I point it out, other times he literally does not remember the words that just came from his mouth. He will attack the people on tv, that is one of his more common ways to express. Gender, sex, race, all these things that I know he has never had an issue with in his life, but he sounds like some horrid extreme opposite of who he was. It always takes me by shock. He's better about not saying things out loud with a few people around us, but I see it come out when he is out in crowds. It's amazing in a horrid way how physically damaging the brain can change people in such complete and fundamental ways.

I always wait for it to pass, and for the most part after a few hours or a good sleep, it will. *My* Wash will come back, along with his sensibilities and his true kindness. Brain injuries and cancer can be so devastating and challenging.

One of the downsides is when he gets in these kinds of moods I get so tired from having to be so patient when he says things that make my head want to burst. I have to be patient and kind, and unlike being polite to a debate opponent I can't just tear apart in front of him WHY it is inappropriate/not kind to say those things. I have to see if he even knows or remembers or is aware he made the statement, tell him, wait for him to calm down, and go over why it is not "ok" to say out loud, or why he may get weird looks if he says it out loud and out side.

I love him, I hate the parts that have been stolen away by cancer and surgeries and a big fucking tumor.

Meanwhile I wait for an apology 8 days overdue. [Not Wash] People I deeply love seem to hurt me the most when I'm let down.

More later, pill time again.

Summations

And THERE is it. 2 plus hours into a not-fun-at-all talk this morning, continuing from last night, and Wash has said it out loud, again.
"Because I need to DO SOMETHING, MAKE SOMETHING of value, or why else stay alive? I'm worthless just existing."

He truly feels, believes, and was told from a young age on, if he cannot be "productive" in society, he should just die. [Why yes, he did read a lot of Ayn Rand]

He's already spoken to Hospice about this before, and his Chaplain and Social Worker, and Therapist have all said that is not true, but he really fucking believes that if he cannot work and get a paycheque, he should just fucking die already.

I told him earlier the least he could do today was to be honest to himself and us around him.

He's been so verbally abusive today.

Brain cancer can suck on Sideshow Boob.

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So we had some nurses come over this afternoon and talk to Wash, and he spoke very honestly about his suicidal thoughts and wishes, but was able to say he would be "safe" for the next day and not an immediate danger to himself.
The nurses adjusted his meds, and had a social worker come over after they left; she talked for about an hour with him. She was able to figure out he was triggered into this most recent cycle when he was on the computer last night and saw a little side-ad for architecture college degrees.
So, we talked of a few ways to help when he was triggered, and how to distract him from the self-harming or suicidal thoughts.

Our friend N. is coming over to take him to a burger place for dinner, and my brother is coming over the evening to help me watch and distract him. I still want someone to sleep over with us tonight though, and someone in the morning.

So.
Hospice rocks, cancer sucks, and this is emotionally draining. Also, my intestines hurt again.

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Wash has said he is ok with me posting these portions of my more private entries from the last day.

He wants people to see what it is like.

He wants others to know what happens, physically and mentally.

Even in his most trying times, he wants to be an example, and it breaks my heart he cannot see what an effect he has had.

As befits a TimeLord

I suppose I should be more shocked at the response we've gotten in the last few days. Geeks and lovers of specific shows bond hard it seems.

I'll get to some questions in a moment.

Wash has been holding steady the past few days. Physically he has been a bit more run down for some reason, we were not even going out on a walk to the mailbox together, he's just been physically tired lately. I did get him and Leto outside to watch me garden the other day, but he was too tired to even read out loud then, just watch and look at the green oasis I have made in the back.

I did later last night get him out for a small walk around the block. His first real physical activity in about 3 days. He crashed out before midnight and is still in bed now, trying to disappear under the covers.

Mentally he has been fairly present and even this week, though again, I've noticed him not reading words as much- he's switched over from some short novels to a comic series now. I notice these things, but I'm not really sure how aware he is of them. This is the unpredictable portion of the predictable cycle of brain cancer.

And speaking of, to every single one of you who has read our story, shared our story, or donated in some way; thank you. I literally could not give him the highest quality of life *I* can without all of you.

As to the TARDIS; we actually DO have a TARDIS cookie jar! I got one for Wash for giftmas back in Dec of 2010. We tend to keep Jammie Dodgers in it and it frequently is moved about downstairs. Wash does not want the plastic, or the memories we have of the cookie jar fucking me up after he's gone.

We have received about a dozen offers so far from folks willing to do a ceramic urn for Wash; he is trying to look through portfolios and decide which idea he likes the best. It is his decision, and I will do my best to thank every offer we have received personally- a small thank you for all the wonderful woodworkers who have reached out as well.

We are in touch with April from Regretsy to choose the final urn, and Wash again thanks every single artist who has offered to help give him his wish of a resting place.

It can be overwhelming sometimes to be this young and thrown into a situation like this, and I would not have made it this far and long were it not for the oftentimes unconventional support.

Wash and I are Browncoats too, and I think he has really seen just how many people he has around to carry him when he can't even crawl.

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Wash also says if anyone wants to or can get in touch with The Grand Moff [Stephen Moffat] or Nathan Fillion he would be happy to get some kind of dying-geek shout-out from his idols.

[Thank you to R. for the most excellent photoshop on the pic. I frakkin' LOVE it. Someone tell Wil Wheaton we're saving Wash now, not Ferris]

Speak Friend and Enter

Wash said this about his gift from me on Saturday night;

"My wife's 'Leslie Knope' anniversary gift to me: A steakhouse dinner with friends and then an awesome adventure movie after. My inner Ron Swanson smiles."

I'm happy my husband is pleased. Yay!

I enjoyed highly my own little bridal/anniversary party.

Details and photos to come.

I think waking up today, feeling happy and loved, is something to celebrate.

Eye of the Hurricane

I had a Migraine appear yesterday. This was about my 5th ever- I started getting them a few years ago when I turned 19. "Painful" and "Horrible" are very light words for this.

It was as intense as my gallbladder melting. It felt like Athena trying to hack her way out of my head.

So, Wash spent almost 4 hours playing with his Hospice Volunteer yesterday and we had Andy* and another girl-friend of mine come over for Walking Dead BINGO.

I'm going to try to write about Sunday morning in a bit. It was a hard few hours; Wash did not know what day it was and was so aggressive to me when I tried to tell him that it was Sunday, not Saturday. He remembered what happened but just could not put the TIME together with the ACTION. It was a real hard startling chance for me to see how his brain cancer, GBM, really effects him.

It was painful for me, in more than just his yelling or his nasty Not-Wash words.

I hate seeing him that confused. That hurt. That scared.

Venting

So I had asked Wash to do ONE thing Saturday (make a call to an automated number to find something out) and he (should have known) did not do it. I reminded him first thing when he woke today about it and he FLIPPED THE FUCK OUT on me. He thought today was Saturday and I was messing with him. He remembers "yesterday" but has no association anymore with "when" things are; the days are now a concept to him it seems; even having calendars around doesn't help much.
I talked rationally to him for a bit, but I'm really not sure how much he understands or how much he really comprehends right now.
I cried for a min in my bedroom. He is not the same, he is not "himself". The man I love comes and goes, and most of the time a very selfish and shell of a person is left for me to just literally take care of. I am and sad and miss my husband.

Some mornings are just shit.

The Fiddler

I have a few minutes before the busy day today begins.

Wash asked me before we went off to sleep early last night (before midnight for me!) what was *good* about my Tuesday.

Outside my supreme high stress day, I thought more and found several nice moments.

Wash brought Leto outside on his leash to keep me company while I gardened. I grabbed another half dozen ripe tomatoes, I have several pea poles now, my watermelon has just begun to come up... it was a nice way to spend an hour.

We also got to cuddle for a few hours and watch the start of "Dexter" [which neither of us have seen] and even ate dinner together at the same time.

Wash was physically strong enough to go on a walk with me yesterday too.

We got a few nice things in the mail.

Right now, I'm going to try and skip and gloss over the bad parts. For now.

But my day ended as perfectly as I could ask; with him warm in my arms.

Breathe Easy

Part two of maintaining insurance / MediCare and food stamps (SNAP) complete!

My asthma has been bothering me a lot this week, not sure if it is the wetness- a trigger- or stress- also a trigger. I'm hoping and trying to avoid having to see my doctor or worse, the hospital. Thankfully the nurse on call knows me personally and gave me some things to try with my home nebulizer first. I'll just have to try and not stress today and breathe easy.

Back to insurance. So my first interview/panel review was today. We have one every 6 months and they get to look through just about everything. Medical records, yup. Bank statements, yup. Copies of food reciepts, yup. Copies of co-pays, copies of every prescription filled for the last 6 months, yup....

It's about 50-70 pages of paperwork for me to gather and file. Roughly 20-40 hours of work. Hours away from Wash. I hate that part. I've hated it the last 4 times I've had to do it. Not to mention the pain of having to fax all this in and get confirmation. It is one of my biggest stressors outside of money and brain tumors.

This time, was a bit different.

For starters my wait time was only an hour to begin with, which is not bad- I'm used to 2-3.

The main interviewer also never doubted me this time when I confirmed Wash did indeed have terminal brain cancer. She was patient and kind. More so, she was able to (unlike any others prior) understand that me taking care of my husband was full time and unpaid. We had our interview for about an hour and then the best news came; I only have two documents to submit to the board this time around. They have my file already, so they are not making me repeat every piece of paper like they had. Huzzah!

I have about 2 more steps to complete before we are both "set" for the next 6 months with insurance and SNAP, but it is amazing what humanity can do. The simple act of understanding that you are dealing with people; sick people who need help, rather than just numbers or expenses can be... so amazing. I'm amazed at how nice I feel after being treated like a human.

Why is being treated like a human such an aberrant experience?

Aside from that, we had some good quality time this week, and some really nice surprises in the mail. Wash was not up to his physical best yesterday but we are both hoping he feels better tomorrow, I want to take him down to the aquarium on Friday.

I have more to say, but I just told myself not to stress out, since I'm trying not to fuck my asthma up any more.