Thursday, May 31, 2012

The in-between

All things staying the same, Wash will go into a Hospice Respite home/facility Fri (tomorrow) morning through Monday afternoon, planned.

I am too numb, scared, tired, relieved, and nervous to process more than that.
My mother and I toured the facility today, it was very nice and should meet his needs, if not all his desires.

I have a list, but I cannot pack his things yet. I'm not ready. A few more hours won't matter.

Rationally, I know this is the right thing to do for us both, however much it emotionally hurts to be away.

Wednesday, May 30, 2012


Who's got 2.5 thumbs and 7 hours of uninterrupted sleep last night?

This gal!

Wash was out for 10 hours. The new pills seem to be helping.

Busy day, we have a "day team" Hospice Evaluation today, hopefully it will show Wash and I both need more help.

A few friend visits scheduled, maybe even a Warhammer 40K game for Wash.

I'm hoping for a good day.

Monday, May 28, 2012

Little smiles

Sharing something happy;
Wash and I are watching "Harry Potter 3" (I've never seen it) and went out for a walk earlier to the farmer's market across the street.
Later I'll be making artichokes with lemon butter, fresh corn on the cob, (fake) burgers and chicken breasts to go on my indoor grill, and a caprese salad with fresh tomatoes, basil, and soft mozzarella and a aged balsamic vinegar dressing. We also have cake-pops for dessert with red, white, and blue sprinkles.

I feel hopeful today will be a good day with some happy memories for me.


The new mix of benzos and his sleeping pill seemed to do the trick.

He slept for 10 solid hours. No waking me up, tossing, or anything.

I got about 6 hours.

We're off to a good start today. He's very happy and seems quite "present" today. Sleep helps us both.

Sunday, May 27, 2012

Where do we go from here? Kumbayaya Remix

Friday was a long day. Lots of shit from Wash, and very very little sleep for me.

Then he woke me up every 2 hours.
I made some desperate calls and my mum agreed to watch Wash for the day so I could rest. He did not fully understand that, so for the first while was just angry at me that I was "abandoning" him again.
He came home after 8 hours away and right as soon as my mum left, began to be nasty to me again.
I had gotten one good nap in and a bunch of chores. Not in the best mood to deal with his crap, piling on me.

I called Hospice and let them know what was going on.
After about 2 hours of him being pissed and me doing laundry upstairs, he had some medical cannabis and calmed the frak right down and even apologized.
He went from, "I want to sleep on the couch and even if it's my last night alive I would not change anything!" to "I'm so sorry. Can we please cuddle?"

He's still asleep right now (2 extra hours for him) after passing out after 3am, myself after 4.
I'm expecting the Hospice Nursing team to be here before noon. We'll talk about medication changes and options for Wash to go away to a Hospice Palliative Home for a few days so I really can rest and get some things done around here.

I'm scared. I'm afraid to go another day with the person who wears the skin of the man I love; it's literally a stranger in my husband's body. I'm afraid to go a day without him. I'm scared of him dying away from home, away from me.
I'm scared if he leaves, will he remember me when he comes home? Will he remember home?

Brain cancer is g-dsdamn awful.

Saturday, May 26, 2012

pudding brain

This is my breaking point.
I have not gotten a night with more than 5 hours (at the max) of uninterrupted sleep. Since May- averaging 3-4 hours of sleep per 24 hour period.

I did not sleep 'til after 4am this morning.
Wash woke me at 7 something. At 9 something. Again at 11, I BEGGED him to go downstairs and watch a tv show for a half hour, less than 10 mins later, he's chasing the cats through the bedroom.

I am at the point where if no one local can help me watch him this weekend, I'm calling Hospice and he's going into a 24 hour care home for a few days. Hospice will let him stay for up to 5 days as "Respite" for me.

I need sleep. And rest. I feel like I'm literally coming apart.

Friday, May 25, 2012

Things i never thought i would have to say "no dont touch that. Go wash your boogers off your hands first. Stop picking your nose."

Wednesday, May 23, 2012

Locked in a bathroom

Wash's energy ran out before he could get his play-date/game this afternoon. He's refusing to listen to me, or take

his meds (properly). Also, apparently I am worth yelling at and giving nasty hand gestures to, because I informed

him he was not the only person with cancer, and other people might need me.

So, I'm the "bad guy" again.

Frakkin' brain cancer.

Crashing out

Dying is not cheap.
Just got the MediCare copy of Wash's bills since he started Hospice (We have at most a $5 out of pocket co-pay for some things, Hospice bills MediCare directly for the rest)
So, I've shelled out about $1000.00 in out of pocket/uncovered expenses for Wash's meds per month.
Of the covered /paid by insurance stuff;
From mid January when he went on service to end of April, MediCare has now paid $21,210.42 for Hospice services.

Even dying at home with Palliative care ain't cheap.

/Yes, I'm glad we're 95% covered, but it's still amazing.

Monday, May 21, 2012


We've had a good couple days. Nothing real different or changing about them, but perhaps, my own attitude.
I've been trying all day, and will continue to do so, to be positive and kind and thankful. I can mourn on other days, today should be for unity and happiness.

We were getting ready for the Eclipse this weekend; Wash could not remember if it was a solar or lunar one so I had to keep telling/reminding him. At the same time, the more details he wanted the more I also began to process that likely this would be his last one he ever saw. We're not due for another 17 years or so; as far as I know David M. Bailey went about 15 years with GBM. I don't think Wash will have that luck.

When we were kids we made the pinhole projectors to watch the last one on; around '91 I think. This time, as adults, we actually had proper equipment; high grade welding masks.
Wash used to weld; back as a side hobby when he was in Architecture school and interning. He welded me my throne in our backyard! Talented guy; and he had his own (cheaper, basic model) mask. But, it's through a shade 10-11 so pretty good for protection.
A few months into us dating and I spotted a mask someone had not-properly thrown away and cleaned it up and gave it to Wash; it was a super nice model graded to 13-14, solar/electric so it has a sensor that turns on depending on the light intensity. I wish he had had more of a chance to use it. So, the masks have been sitting off tucked away for a few years and now we had the opportunity to use them! I set up a live channel with one of the telescopes in Cali/Grand Canyon and then we checked outside when it began.

It's a different vision and moment to be able to safely look at the sun and watch a solar eclipse. With the masks the sun took on a green tinge, and it was moving and beautiful in words that seem to escape me, at least in English.
We could see the moon, the shape, the form, the absolute feeling of utter insignificance in the universe... to me it was a Sagan appreciation moment.
Seeing the moon; our small sattelite, grow in perception to the size of the Star; the Sun... it amazes my mind in a way to place a new perspective on things. Short of firsthand going in space and seeing the Earth reduced to a blue marble, it reminded me of some of the first nights I watched the stars in a telescope. There's a wonder to seeing other worlds and objects- so far away that some are dead by the time we even see their light here, it moves my heart. To know that I am so small, so tiny a part of everything, but still wondrous and unique in my own way is moving.
We had a bunch of the neighbours come out and we shared the masks around so others could see it. Our friend Andy* came by (he's wearing the Bald Eagle mask in the pic above) and watched it with us. Met a few folks who live at the new retirement home down the block too! It was friendly, and both Wash and I got to share some astronomy lessons with those around us.

The "ring of fire" for us happened quite fast and I only caught a short glimpse. I was still moved. I know Wash enjoyed the whole thing, being with me and new friends, getting to teach others, and seeing a wondrous event for the last time.

I feel humbled. Looking at the sky going dark, the moon covering up the sun, I could image hundreds of years ago the utter fear that might inspire. The spark of human creativity as well; the need to know why it was happening, what was going on? I felt connected to every other human across the world who has seen our Earth go dark. Felt the wonder of the great WHY, felt connected to know that others were watching the very same thing all around our blue globe.
A great and utter insignificance, and yet, with every thought and feeling, a personal importance and presence.
As the Sun, Moon, Earth, and all stars exists, so too do I. My thoughts remain.

I think I have a greater appreciation for who my husband was today. Why he was so utterly devoted and passionate about space and beyond, exploration and discoveries, and the never ending pursuit of personal knowledge. His passion was certainly attractive when we met, and to some degree it remains inside him, but I wonder if yesterday when I was watching that eclipse, if perhaps as well as with the mask, I was watching it for the first time with the wonder and eyes of my husband and best friend. With the feelings of someone who wanted his cremains sent out in little rockets; with the hope to someday join the rest of the mass and energy in space.
Wash appreciated/s the Cosmos almost like no one else I've known. It comes out in his love of astronomy and his own telescope we have, as well as his love of watching and reading about space- fictional or not. He writes short stories about being in space, and they make up the bulk of our book and video libraries.

I will hope when the next solar eclipse comes around that if my husband is not standing next to me that his cremains, or even just his energy moved from the mass that Once Was is somewhere in our universe, watching the same show, seeing the stars and planets align and feeling joined to it all like I do.

For now, I think his passion lives inside me. I can hope to do it justice.

Even more so, I hope to live to see Wash in some way, sent to space.

Trivia time; Wash's most often read books? (not anymore, but before he got real sick)
-Cosmos by Sagan
-To The Stars by George Takei (autographed too!)
-The Star Trek Companion (he's got one for each series)
-The Foundation Trilogy by Asimov
-Fallingwater Rising
-Firefly, Still Flying

The man loves the universe.

Sunday, May 20, 2012

Bell, Book, Candle

Days sometimes begin to blend together. Wash is still on a late night schedule, so when I wake at 6am, after getting down around 3am, it makes for some long hard days.

He had a shit fit this week over the way he sleeps; we've been to specialists and his doctors who have all told him with his brain issues he needs to sleep with his head up higher than his body. This does not suit Wash well at all; he prefers to have his head as flat down as possible and his legs left up- pushing all the blood and excess fluid into his head.
So, he had a HUGE shit-fest about it on Wednesday- even pulled the "If I can't sleep like I want to, why should I be alive?" card. So, after making a plan with his Hospice nurse- because I remember his side effects even if he does not, we all said, "Sure, Wash, sleep how ever you want to." decided to test it out for a few days.
He looked like a chipmunk. His face, his eyes; they were so swollen. He had horrid headaches and light sensitivity. He also had a complete memory black out; whereas he normally is not aware he's missed something or forgotten, with this, he knew something had happened- but could not remember ANYTHING for the first hour he woke up. That scared him so bad he's gone back to sleeping how the doctors tell him.

I'm sad he had to learn the painful way, but with his memory issues, he just doesn't TRUST me all the time, even when I tell him I'm trying to save him physical pain. I don't know how long he will remember this most recent episode, but it's been about 3 days since and he's not make a fuss over sleeping upright yet.

We both had a talk with his folks on Sat; I spent about 30 mins in the morning going over with them how he is, how the week went, the bad issues. I pulled up Skype for him a bit later in the evening for him to talk to them. Lately he has been having some speaking issues; he mumbles a lot, speaks softly, and says things under his breath he is unaware of. So, talking on the phone for him can sometimes be a challenge for others to really understand him. Again, I think since I'm always around him I don't notice it as much until someone points it out to me; but he does mumble a lot more now and it's harder, I can tell, for him to find the right words, and get them out.

I'm starting to feel a lot more numb. I wonder if it's my own way of preparing for what is to come. I have to take things one day at a time, it's just too hard and complicated to try and have a future more than 7 days in advance, 30 months of terminal cancer has just done that to me. He doesn't understand time at all, it all comes back down to/on me.

At least lately I've found a bunch of good (some old) action and adventure movies for us to watch. It lets him laugh, or forget his issues. It's been nice to hear him laugh lately, he does it less and less.
I hate, I hurt to watch who he is slowly draining away from him.
Brain Cancer just drains away the man I love.

Frak cancer.

//Hospice Helper P. is coming over this afternoon to play with Wash for a bit and help him make some cardboard eclipse viewers (on the off chance we might be able to see it this sundown). Wash loves shit like this, but he's not been able to remember it. I'm hoping we can see it in AZ where we are; likely this is his last chance in his life to see a solar eclipse.

Saturday, May 19, 2012

Brain Tumor Awareness month

Brain Tumor Awareness month: Lanette Veres from Gray Matters Foundation talked to Nicole about her battle with a brain tumor and also that May is Brain Tumor Awareness Month. (5/18/2012)

Link goes to a video from this week; Lanette heads the local brain tumor/cancer support group here in AZ. Gray Matters is the non-profit donated to back in January. They rock with support, love, and care.

I know some of you came to my blog because you or someone you love and care about is also fighting a disease like this. Lanette is someone you should also know.
She's a hero to me.

Friday, May 18, 2012

04:58 pm and the last visitor of today has left. Another long day but a mostly positive one. Cuddling w the cats. Day by day it goes.

Thursday, May 17, 2012

Watching #Rambo with wash and Nate. Its my first time. This will be interesting to see in 2012 new to me as opposed to when it premiered.

That Face

Wednesday, May 16, 2012

His Highness

My cat is my baby. And is hilarious; a 2 year old juvie Maine Coon.
Laughing my butt off right now; Leto is trying SO HARD to flip the light-switch in the hallway. He's tried jumping straight up, and leaning over from the fan to reach it; and falling off the fan every time. The most entertaining part is the switch is down, so even though he can reach the panel, he can't switch it to "up"!


Had a few good days, some good moments this weekend.

I can't yet figure out if I should keep up my small journal/notes and publish them, or limit to when I can make a real fleshed out post?

It's hard to watch him die. To watch him slip away bit by bit. He had about 3 days/nights/period of hours in the week where he's been very "Wash". His personality just keeps fading. He comes around for friends, to talk, and always to play, but less and less.

Lately he's been making "jokes" about suicide. Hospice says this is his way of coping with some issues relating to his coming death. It's so so so so so tough for me to hear his "jokes". I cannot laugh or see humour in them.

It pains me to hear from so many people that they think I'm getting burned out or over-worked. These are almost always the same people that don't offer any real help or solutions outside of, "I'm worried."

I'm frakking worried too, but there's no one else. He loves me, and a part of his brain hates me too. He sees me as the "reason" why he's in this place, why he has so many rules, why he can't instead of being able to remember or place that emotion properly on his cancer, not the person who has to keep him safe from himself.

It's hard.

Last week I fainted because I ended up going 30 hours without eating. I eat about once, maybe twice a day now almost always after Wash goes down for bed, 10pm-3am. The rest of the time I'm watching him, which, even if I have a moment to cook, prepare, and eat a meal, I'm almost never hungry. I'm just so stressed watching and caring and dealing with his hatred and anger at me, I don't want to eat. Also, a lot of the food I buy is for him. I forget that I'm a person too.

I yelled at my brother G.* this weekend when he called right as I was heading into my first shower in about 5-7 days. He wanted to "chat" and I wanted to take advantage of my 15 mins alone to shower for the first time in a week. I guess for him it's harder to grasp since he lives alone and showers for 40mins every morning.

It's becoming so hard for me to explain to the people close and around us just how much Wash's cancer effects me on so many levels, how I'm so tied into him and his moods for the mere fact of being around him 24 hours a day 7 days a week for 30 straight months. Even most prisoners get a "break" from their cell mate daily. I don't like it, but I can understand that Wash's anger and rage are going to come out on the person around- me.

Dying is not easy.

Monday, May 14, 2012


It's a very very bad day to wake up as a woman (or as a human who cares about women) in

Arizona. Even infertility doesn't spare me the pain of Brewer's reach.

There's something about having personal, human, biological rights taken away from me, as a

consenting adult that help me to really remember come Voting time.

Thursday, May 10, 2012

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 for more information on Kevin and Glioblastoma Multiforme brain cancer.

Tuesday, May 8, 2012

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.

Monday, May 7, 2012


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.

Saturday, May 5, 2012


So, one of the downsides of Wash's brain cancer is that every once in a while he hallucinates. Sometimes it is visual, sometimes auditory.
This means that often Wash will ask me to verify if he is hearing/seeing something correct. This also means he will wake me up randomly in the night to ask if I heard the "sound" he did. That's a bucket of fun.

But, sometimes he's not hallucinating.
So, for a day he heard buzzing in our kitchen. I said it was probably one of many things we have plugged in and the motor is making a sound. I was wrong! The next day we both saw 3-4 flying things in the light fixture in the kitchen. Since I will die if stung, I freaked the fuck out and ran outside. We called for backup and Andy* came by and he and Wash fought a brave battle that rages between 4 creatures 1" long with wings, and two fully grown human men with a can of RAID that shot a 20' spray.
The Men came out Victorious.

And I promptly called my doctor for an Epi-Pen refill and my landlord to get some Pest Control workers out here.

So, they came today, sadly with little warning. Which led to my last minute harried-ness this morning. We had help on Thursday and Wash actually told his aide NOT TO HELP HIM. So, the place was left a frakkin' mess. I am not upset at the aide, she was listening and caring for Wash, he just kept insisting her to leave things for "him" to clean "later". [I was having a long talk with the Social Worker out of the house at the time] So, Friday my house was a mess, and I was so busy and tired I couldn't do everything. And Wash was just happy because he was seeing a friend, and going to the Avengers movie, and getting to eat dinner out on top! So much fun stuff! For Wash, he cannot do more than one task at a time, and he forgets things. So, all his stuff he was going to pick up and clean, he did not.
Since I knew the kitchen had to be cleaned/cleared out for the pest guys to check, I ended up waking after less than 3 hours of sleep yet again this week (no naps for me, either!) to clean all the things Wash said he would have taken care of.

I know he needs to say these things to make himself feel useful, to feel needed, but all it does is add stress to me. Every time he puts something off- which is 99.999999% of the time, he never comes back to it. That's how his brain works. But, if I just do it for him, or if I do it after he says "I'll do it later" he turns his anger to me- "What, you don't trust me? You know it's your fault, really, you tell me I'm not allowed to do things when I want to!"
So, I just could not handle all the chores and work to do today, watching him and dealing with any help or issues or anger at me, dealing with the pest guys, and no sleep. It's all too too much.
I called my mum. Thankfully, she and my (step)dad agreed to watch him for a while today, let me work and rest a bit.
Wash was not really happy about this. He was confused, and angry and so mad that I "would not tell him where I was leaving him!". I had already told him calmly twice that he was going to stay with my mum today so I could work. He just literally could not remember even as I told him. So, he was pretty confused and angry when he left. He seems to think often that when he goes out for a day with someone else, I'm "leaving" him, "abandoning" him or the like. He just cannot grasp otherwise.
That's painful to see and deal with.

I did at least catch his mother up on things, so his parents really know. I just was not able to lie, to hold back, to be kind about it. He's not doing well. Things have changed, they are getting worse, and they very very likely will never get better again. So.
I cried a LOT this week.

Back to the pests, though! That was my histoire du jour.
Cleaned for 3 hours, and got Wash safely to my mums. He even got treats and snacks to go along with his sketchbook and ses 3 of "Fringe" to watch.
The pest guys came over, poked around a bit, checked outside, looked at my place and my 2 neighbours West of our unit, and came to a verdict of not Wasp, not African Honeybee (several colonies found locally in the last couple weeks) but Carpenter Bees.
So, our downstairs was treated, the outside, a crack in the wall between units filled, and the wooden fencing in my backyard treated too. Same for the neighbours.

Now it's noon, been awake for 5 ish hours, and have a few clear hours without Wash to try and rest this afternoon.

I think my biggest challenge will be to actually rest right now, today, and not use the next 4-6 hours to just clean without a Wash following behind me, or messing right up the things I just cleaned.

Thank you all, Dear Readers for your comments, support, and good wishes. I know, even though it's painful to face the truth, I'm coming into the final stretches with Wash.
I'm just going to do my best for him, and my best to be vocal about my own needs right now.

Friday, May 4, 2012

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.

Wednesday, May 2, 2012


Another bad night.

He passed out sometime close to 3am. I was up til 4.

He was just so confused and angry last night. He wanted to sleep alone.

This morning his meltdown was because he forgot how to work a dryer. "Settings? What are settings??"

More Hospice folks over today. More pills. More memories forgotten.

I woke up without him next to me this morning. So hollow inside.
Fucking cancer.

Thank you R. for the humor book- was the only thing yesterday I could laugh at.