Hard Words

It's been a while since I've felt comfortable enough, or had the precise words to explain what is going on in my life past the physical details. [Foot not fully broken/fractured, still fraked up for a few weeks.]

Births, marriages, engagements, deaths- too many, pregnancies, jobs, new locations.
This is the excitement and progress of my friends and family.

I am happy for them. I have far more hope for any of them than I hold for myself.

Roger Ebert in one of the short notes he sent to me said that it was alright to write about the horrid parts of life. The nasty parts of cancer not shown in those films with a happy ending. It is ok to share the utter desperation, the desires, the lowering of one's self on the chance for mercy from a world that holds no "fairness".
"Truth is not always a happy ending." R.E.

How very true.


This post might hurt. It hurts to write, and I'm sure for some it will hurt to read. Cancer and dying hurts too. Living and knowing the one person you loved, who loved you back, is gone and will never ever come back- hurts.

"Life is pain, highness. Anyone who says differently is selling something." - W. Goldman [The Princess Bride]

When we got married slightly to this theme, that quote meant something so different to me. Wash inscribed my wedding band with "As You Wish" on it.
It's quite amazing how much foreshadowing our relationship has without either of us really picking up on it. I had him nicknamed "Wash" within weeks of us dating. We both knew what happened to Hoban in "Serenity".


I am not "stuck". I am however, mad lately. I'm mad that people around me who have not felt this pain feel it is appropriate to tell me how to deal with my pain. I'm mad that they think there is some magic number of weeks, months, or time that can pass before I should be where they want.
I'm mad that people want the Tashi "back" that does not exist anymore.
She's gone just as surely as her Wash. Never coming back.
I think that acceptance is slowly happening.

I'm mad at myself for hurting at someone else's happiness. I am utterly confused at how it is possible for me to feel so happy to see friends get married, or have a child, or get hired at their dream career, or become pregnant- and so mad at my own life for being deprived of that.
I had 4-6 weeks of marriage before the cancer began to grow in his brain.
Twice we almost stayed pregnant. Twice we both held onto Hope that in some way (biologically at the very least) Wash could continue on. Twice it ended in blood, pain, and tears.
Leto the cat is now the only living part of Wash I still have, or can hold.

I find less and less to talk about, socially. I have little I can relate to with my peers.
The Widow's support group is also made up of people in pain like me, but all so much older. All who had time or a chance at a life with the one they loved. They had children, reasons to wake in the morning and function. They had homes they built up together that they could get comfort from. Years, sometimes decades of memories to hold on to. To recall. To soothe.

I am mad at the people who suggest that because I was "only" married for a short time that I can/could/should "move on" now. That 6 months is enough time to "heal".
I am mad at those who imply I will have or find love again. I had it once. I found him once. I gave my heart and soul once. Who are they to know my intentions? Who besides my own self should say if I even desire to love again?

I am at the age where so many of my peers are married, engaged, pregnant, or having children. Over and over I see milestones I wanted to have myself, and cannot.
I will never have a new birthday card from my husband again. I'll never hear him sing to me that I'm his "Queen of Argyle".

I have pain. I have sorrow. I have tears. I have little Hope to share.
I have a large space to carry pain, to support others. Some days I wake as Atlas, carrying the weight of the world upon myself, and not questioning why I do this. Why I carry this burden.

I am hurt that Cancer keeps stealing people we love. I am tired of this. I am 26 and so tired.
I carry Hope, but it is not a weightless burden.

Hope is painful. Hope does not protect the heart. Or the brain. Hope is irrational, one of the confusing parts of being human I am still trying to comprehend.

When I began this written record I chose "Learning to Hope" in the sense of Hope for my Wash. For his future, for his fight, for us. Now, I think the Hope is for me. How to keep wanting to Hope, when I know so well how much it can hurt. How the nights are spent either awake, afraid of the silence and dark, or sleeping restlessly in a dream of chasing someone I can never catch.
Hope that someday life will become desirable, not just passive, waiting for the moment I breathe out but not in.
How do I continue on, when I still hear him in my head? When I can still read his stories and words? See the world from his eye in his photographs.

He is gone but save a digital footprint of his existence.

And, yet.
Yet...

He is the Gaius to my Six.
Whispering in my ears. Touching my hair. Standing in his kilt. Kissing my neck. He lives in me, in my brain, in the memories he shared and gave to me to hold. I cannot begin to imagine how one can "get over" that.


This is my pain. My grief. My anger. My sadness. My soulmate. My timeline.
My life and future to mourn.


Yes, I still hurt. I can smile, but I ache.
I feel a need to hide away from the happy world. From the lives others are living. I am not living. I exist right now.


Is this the trade-off? Is this the start of my re-payment? A karmic debt I owe?
Is this the price of love? Of the short, but fully complete happiness I once had?

I think I am still too young to say that for certainty. I think I am not omnipotent enough to say that for certainty.

If this pain is the start of the price I now pay, I owe.
I owe this pain, and I own it.

I gave my self and my heart up to him. I willingly gave it. I gave him everything I could.
From 2008-2012 I had his love in return. I had him. I had unconditional love for all of me. I had more than a friend. I had more than a lover. I truly knew Hope, in a painless sense, then.
I had his love.

If this pain is my price, it is mine.
I would do it all over again, in a hummingbird's heartbeat. Knowing the pain, the tears, the sadness, the blood, the loss. I would do it again.
He was worth it. 4 years, or 40 seconds. His love was worth it.
It does not ease the pain, does not put a balm on my wounds, but it is the truth.
I would put myself through every bit of this pain again, for him.


I can wish my story had a happy ending. I can wish it was a different type of cancer, a different disease, a life of health. I can write that we struggled, but overcame and lived happy forever until we both died on the same day, decades after our marriage. I can write we had children, and grandchildren. I can write we both had perfect dream lives.
But I write truth here, not fiction.

There is no "happy ending" in my life. My love story is a tragedy, not a happily ended romance.



Photo is from approx 2004-06 from Wash's Speech Black Book. [Speech and Debators will know this.]
This is his opening selection from "Will the Circle be Unbroken" by Studs Terkel that he used in an Oratory or Dramatic piece.

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.

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.

64 minutes

That's how much time I have right now to process everything, cry, think, deal, cope- before Wash wakes up from his nap and needs me to help him move.

Wash did not have a good start to his day. He fell a few times (thankfully onto the bed) when he first woke because he forgot he has trouble standing/walking now.

He was angry. He was confused.

He was a stranger needing help and ready to fight if anyone tried to give him (help).

I called the Hospice nurses and got him some meds to help him calm down. The Nurses wanted to send one out to check on him, and our (awful, new) Social Worker as well.

My mum came in the late morning to help me watch him. By then, he had mostly calmed down and was back to playing LEGOS. That seems to be one of the only things these days he enjoys, building his little LEGO worlds. [a friend sent some Star Wars LEGO sets last week he's been working on]

We had P. our afternoon aide come at one and the nurse was here at 2:30. The (awful) social worker was late.

We spoke like we did literally yesterday about his falls, about his short term memory issues, about my concerns for safety, and his concerns for lack of control....

The talks did not really resolve anything, but I have a lot on my plate to think about and figure out.

Bottom line, he's not safe upstairs anymore. So, I need to figure out how much space I need to make, find a mini-storage place, pack/move/box things up, get them moved, get the downstairs "safe" from sharp corners or things he could pull down if he fell, and figure out if I will be sleeping with him in a bed downstairs- if so WHERE- or do we need to keep space for the couch AND a little standard single bed? How much can I move before his brain freaks out at the changes? How much can I move before MY brain just cries and breaks down at the changes? The Aspie part of me has been (in my brain) hiding and crying in a closet for two days now. That part of me is unquestionably despondent at change.

Then, this all has to happen when Wash is somewhere safe; so do we try and get respite care hospice stay for him again, or does he present more of an "acute" need and thus can go right in to a hospice home for a while so they can get his morning stable and figure out how to best help him move around without posing a risk to break bones?

I won't even hear back about the possibility of a respite stay until Monday.

I feel like I have no time. Like this is all happening now far far too fast. Even beyond my control, my ability to keep safe.

I can't cry in front of him. I can't mourn. And I cannot get my head to actually make a godsdamned decision while he is here, while I have to watch him, to nurse him, to be strong.

Not to mention my asthma, which this week has been kind enough to flare up for me (smog and stress, my foes) so even if I have an hour while he sleeps, when I try to let some of this -emotional blockage- out, I just end up crying a few sobs, and then gasping for air as an asthma attack hits.

I am quite thankful for my mother. For her being there for me, for us, today. For the hug. I don't get hugs from Wash anymore, kisses really either. I think that part of his brain, himself, that could, that wanted to give ME comfort, I think it's gone.

I'm out of words. My brain just locks up. Rationally, I know what is coming down the line, I know the process, I know the stages, I know the signs.

But, as much as I try and strive, I'm not a fully rational creature. I have emotions.

I have memories.

The pain is overwhelming. I do not want to imagine how much worse it will get, how much more I will have to deal with at the very end.

The tunnel seems much much shorter now though.

It's not a light, it's not something peaceful, beckoning, calming.

The tunnel is ending and I can hear the train coming at me.

I should probably also eat something today. Nothing appeals to me.

No more good/bad days. Now we have good and bad hours in each day.

I hate myself in the few moments when I wish it was over. Because I'm not ready. I'm not ready.

Not even Joss, Jane, and Marti can stop the tears today.

'Where do we go from here?'

He can't run, he can't walk, he's getting ready to stop crawling. I wish there was a cure, an answer to pick up my Browncoat and carry him.

Bilbo's hiding from the ProudFoots'

So much stress and drama for days.

Tears.

Late night Hospice visits from nurses.

Thankfully Andy* and Lynn* have been around a TON this past week, outside their own stuff to help both of us. Errands, movies, laughs, from the little to the big. It's vital to have those friends who will be there for you. Like making a commitment to Wash and then keeping it. For months/years. He needs that in his life (outside just me) and at least we have close friends who can fill that need.

Same with being respected. A patient says, "I can't do this", it's best not to question. Unless you are the patients' doctor.

I've met some awesome Hospice workers this week. I'm very thankful for that.

Wash has asked me to keep specific things out of public for right now.

I'm glad for friends at times like these.

//

*Not their real names

Loops

Wash had a bad night on Mon.

He almost fell in the kitchen. He said his legs were weak and numb.

Almost 2 hour after that he had odd sensations and pain in his neck.

Hospice sent a nurse over at midnight for him. Very nice guy, B. who checked Wash out.

He gave him some liquid meds and about 30 mins later Wash was moving his legs comfortably.

He is increasing his Ativan and steroids- in case this is from brain pressure from a tumor(s).

Outside that, Wash will have a walker delivered tomorrow for use around home/walking. His balance is just not as safe as he used to be.

If I have the time or energy, I want to mod it like an Imperial Walker for him. A small geek token to the nerd I love.

It could also just be stress; Wash thinks it is. There is a lot of tension and drama going on right now- I won't go into detail at this specific time because Wash has asked it of me, so I will respect his wish as long as he wants or is alive.

Suffice it to say, there are some external stress factors not directly related to his cancer which *I* cannot really remove /make easier for him. I do my best to distract him, but he has to face this part alone.

He slept in until around 11am after finally going to sleep around 2-3am. Thankfully, I managed to fall asleep shortly after him.

He also napped from 3-nearly7pm today. His body has had a lot of strength taken away, and even emotionally draining issues have physical side effects for him.

My mother was kind enough to bring over taco mixings for us tonight, so we could still have Taco Tuesday, even though Wash is not up for leaving the house.

I appreciate every bit of support from my friends and family right now.

Every day is hard.

I feel like this is the start of the last tunnel, the last long stretch.

My job now is just to give him something to smile and live for each day.

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.

Harbinger

Bad night.

I had to call Hospice twice.

He was uncontrollable. So angry at me, saying the most horrid things.

Then, he started to hit himself.

He's on Ativan and Haldol tonight.

He's a bit more calm now.

He keeps calling Aelphie "Max". "Max" was Wash's old cat when he was a younger kid, that cat has been passed away for many years now. He sometimes catches himself, "No, Aelphie, not Max!" but...

This is a shit awful and scary night for me.

I'll give more details later, it hurts to write right now.

Faster than any known substance

Managed to get out for a walk last night, yay!

I don't have time yet, haven't had time to write about what is really bothering me lately, the newest drama to go on.

When someone's dying, I've found there will always be drama to be created; for some reason even the most sensible people don't want to TALK about issues, address things like adults- even when some members of the discussion have 40 years on the next person. Maturity I have found has no real relation at all to actual age.

My asthma has been bothering me again- could be the air, or the outside daily garden work I'm doing, could be just stress... usually the summer is the best season for my asthma, it responds quite well most years to the dry heat. I've been having to nebulize daily lately, I can see my ankles getting more swollen too.

Wash is also getting quite steroid bloated. He looks like he's gaining weight, but it's so weird, because he's not- it's just fluid!

We've been having a lot of Hospice and ALTCS meetings this week. More evaluations. Trying to figure out where Wash is at, how much more help he needs, how much more help *I* need etc.

It's about Wash, which is how it SHOULD be.

Physically he's feeling better than last week, he's been home three nights now and we've even gone on one night-walk around the block. This is pretty good for him. I try to get him moving every other day- once he loses his muscle he is past the point of being able to re-grow it. He's just too weak now.

We do have a bit of joy coming though, a good friend and Shitass S. is coming to SunValley here with some friends on a road trip and will visit with us some! Wash and I are both quite excited.

I have an appointment next week to get my eyes properly checked; hurrah! I miss being able to see.

I will dwell on emotions and drama later. For now, coffee calls.

Gentleman Caller

Wash is settled in at the Hospice Home for the next little bit. He got a nap in and told me his first meal there was a burrito and rice. He seems upbeat. I feel a lot better, but still miss him in a way that calls me back to his first few days in the hospital and when I was dragged back home to rest.

So it's just me home now, with the kitties and a 5 gallon bottle of water mis-delivered to me today.

I lived alone from 17-22. Never had a roommate as an adult. Wash was the first person I lived with outside my family. It feels odd, and I can remember so many details from that time, when it was just me (and then Aelphie).

I'm also just having it sink in that it can be about ME for right now. There are others to worry and care for Wash. To help him. To calm him. To make him happy, right now. The now can be about me, for the first time in far far too long as a human.

I'm going to pick some clothes tomorrow, new clothes and not from a donation store.

I have no obligations for Sunday, for the first time in as long as I can recall. Years.

I will wake for me; not for or because of someone else. (Unless the kitties get REAL hungry and loud!)

I can have silence if I want.

My fridge has no meat in it for the first time in a long long long time. I'm beyond happy.

There's a part of me that misses him and thinks of him every second, what he might be doing, thinking, needing- if he is missing me too?

I know rationally he will be fine, and he can contact me if something is amiss.

With time and distractions I think that part will quiet down on it's own, not with my work.

I will have time for me, where it is ok and safe to be "selfish". At least until Monday.

It's been 7 hours since I've seen or touched him. I need to sleep, to relax, to calm down, to emote.

I have my family, friends, and kitties to help.

"Everything will work out in the end; if it has not worked out, it's not the End." - Best Marigold Hotel

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.

Alarm

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.

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.

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.

Sheet pans

Wash had a mostly great day yesterday. He was in a good mood, amicable to help out, able to communicate fully, and not super depressed. Good times, for us!

But, after his evening nap again, he kinda just... much more sensitive. I reminded him to call his parents on Skype and that went mostly well. Wash is still trying to learn how to assert himself when his parents bring up something he doesn't want to/can't talk about. It's hard for him, but mentally is it necessary; he just cannot mentally take talking about certain things.

My knee hurts. We had a pressure change and weather system blow in last night. My poor cats, though! I know Aelphie was kicked by me once last night, then she stayed off the bed, and Leto got it at least three times, and just came right back and laid right down on top of my legs again. My knee spasmed so much in the night. I'm glad the DireCat seemed to know I wasn't doing it on purpose.

Wash's meds were adjusted again after his bad night on Monday, and we should know if the side effects are worse for him on a lower dose (because he's just sleeping) or if the rage from the higher steroids is "worth" it as a side effect for the extra few hours he has in the afternoon without fatigue. His Hospice Nurse is checking on him again Fri.

We have the Chaplain coming over today though. We both adore her. She is GREAT at listening, and even better at gently giving good advice. I enjoy her company.

Going to try and have a good day. Focus on the good things. Smell the wetness from rain in the desert.

Another thanks to everyone for sending us love. Positive thoughts never hurt.

Dancing Through Life

I still need like, 6 more hours of sleep.

We were 6 rows back, dead centre.

I could see the mikes on the actors. We could see everything on the set. We were not hearing any mics or speakers, that close all we heard was their voices.

There is no one word to describe how excellent and memorable that show was for us. How many great memories we will now have.

Wash says he is happy to cross this from his "bucket list".

Good shot, Wash. He asked the Hospice folks to help him do this for us/for our anniversary and it was incredible.

I think hearing "Defying Gravity" live will be one of my happiest memories of my life. True, hearing Mandy sing in "Les Mis" when I was little was GREAT, but.... Elphaba holds a most special place in my heart.

I feel like floating on happiness today.