May Day

May is National Brain Tumor Awareness Month.

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

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


I'll have a proper update later on.



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


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

You...You were Fantastic!

"Death cannot stop True Love; it can only delay it for a while."

"I love you, Wash."

"As you Wish, Tashi."

Thank you all for your kind words.

Wash was a Saganist and a Doctor Who lover.

He knew he came from stardust and atoms, and he knew he was going back to that.

His energy is not gone, or destroyed. Just... wibbly wobbly a bit away from MY linear time.

Wash is the only person I know who made it almost 3 decades of life... with not a bad thought or word to be said about him. He was beyond special. Beyond unique.

He was more than my 1 in 6,000,000,000.

He resonated in my soul. He kept my heart beating.

And I know he would think it is no greater honor than to introduce all of you to the wonders of the Whoverse and Science Fiction.

His fraternity brother made the comment, "He was a geek evangelist!" ... he was.

He wanted everyone to love his shows and movies with the same passion he had.

Right now, every time I see a TARDIS... I tell him I love him.

Somewhere in Time and Space, he is out there now.

Parental Advisory

Nod to my friend L. for this, but, if you are *my* parents or Wash's - you might want to skip over this specific entry.

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I did warn you....

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His brain is getting worse. Either the damage and necrosis from the radiation is spreading or he has a new tumor that is growing.

His pain is worse every day. He's on painkillers so strong they come in an eyedropper bottle with huge red WARNING signs all over it.

He sleeps at least 12 hours per day now. Some of that might be meds, or it might be his fatigue from brain surgery. It might change, go back down so he is awake more, or it might be that sleep is the big time when he is not in pain now, so he does it more.

He lies a lot now (he compulsively lied when he had the first tumor), to me, to his nurses and aides. I don't think he is doing anything "on purpose", but the brain is a weird organ.

He tries to use words, sometimes "big words" and he is not speaking correctly anymore. He can put together a sentence, but it takes concentration and effort to figure out what he means. Sometimes I have to ask him a few times to clarify.

I spoke to his nurse/Hospice team leader today about getting some daily CNA help with his personal hygiene. He cannot remember how to brush his teeth anymore. It used to be with a lot of post-it notes he could eventually remember, but I discovered for at least 5 days he was not brushing his teeth, or brushing them with no toothpaste because he moved it from his bathroom to a kitchen drawer. (Yeah, lots of things like that!) He doesn't like me to watch him brush his teeth, wash his face, (his morning routine) because he says he feels like a child.

But, he kind of is.

So, I'm hoping Hospice or the insurance company will pay to have someone come out and help him with that stuff. He has a CNA help him shower 3 times a week already, so it would just be expanding those "personal hygiene" needs.

I can't really talk about this with him even; there are so many hours out of the day where he just cannot talk/listen/engage on an "adult" level. He doesn't understand actions --->consequences (bad or good). He knows things *happen*, but he just cannot always understand the WHY.

He does not say "I love you" to me anymore unless I say it first; then it is a reflex for him.

He does not kiss me anymore.

I rarely get hugs. Maybe a couple times a week now.

We are growing more distant as his memories start to fade.

I know he still knows who I am, but I know on some days he is confused about WHEN we are in time/space. He thinks it is 2008 or so.

It's harder to sleep in the same bed.

We both used to sleep nude. We're married, it's Arizona and HOT. He's started to wear clothes to bed to help with his temperature issues, and I've started too. It's odd, but I feel less comfortable being nude in my own home, in front of him.

I wonder if I'll be sleeping in the office on the spare blow up bed by the week's end?

I cried a lot last night, when I was alone downstairs with the kitties.

It's so hard to watch this part. It hurts me to see him in a place (mentally and physically) where he expressly did NOT want to be. He said many times he wanted to be dead rather than "living" like this.

It's hard to see him in pain.

It's hard to deal with my own pain, all encompassing.

I try to do as much as I can, as best as I can. It's not easy. I just have to respect his wishes and his wants that he made well known.

I should try to nap today while I have an aide here for a couple hours.

Lately though, my sleep is plagued by bad dreams.

I got 3 hours of sleep last night. Fucking brain cancer.

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.

Missed

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.

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.

Epinephrine

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.

Creedence

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.

updates

Tried to go out for a walk with Wash.
Ended up asking him again today to not be so nasty about people he doesn't know (he made a real nasty personal remark about Gordon Ramsay.) and he flipped the fuck out.
Tried to sit down on the railroad tracks outside our home. Said he might as well just get it over with and kill himself.

Hospice and Crisis Response are talking to him over the phone, and they might come by, even though it's 10pm.

Fuck you, brain cancer. I'm too tired to deal with this shit.

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.

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]

Civic Duties

Not a Bus Strike or brain cancer can keep Wash and myself from our Civic duty to VOTE.

If I don't participate in the Electoral process, how can I even think to voice outrage or support?

In other news, I have awesome friends. Some girl friends got together to get me a nice tea brewing set inside the mug (with lid!) AND- they got me motherfrakking compostable tea for it! This is how I know they know and love me; not only the tea, but they know I love gardening and got me tea that would serve me well after I drank it. I am in love with my MFCoAW.

Also, some friends of ours (Roseanna, Hi!) sent us the coolest gift set; soaps from the oldest apathocary shop in the US! Wash got a set of soaps that former Presidents used! (scent wise, not a old used bar.) So, he can now smell like Washington, Ike, or Kennedy! I am fascinated by the history of it, and the scents are really nice too! Wash is adoring the idea that he smells like a former President.

We are both excited for tomorrow. 3 years married. Considering everything we have overcome together, I think it is amazing. Some days I feel like we have packed 3 decades into 3 years, then again, we have to.

Wash is getting some help in the afternoon to make dinner for us. I'm still hoping for some cool things in the mail for him, and still hoping on the off chance he will get a "Firefly" type congrats. A big part of why he has fought against this cancer (that he really can't "beat") has been for me. Much like everything that I do for him, for his smile, for a memory he can remember; he has fought to stay alive in part, for me.

He sees something so special and good in me, he has fought death to stay by my side this long.

I think that is a pretty special gift for any day, let alone our anniversary.

I'm a very lucky person, even on the bad days. I have still had 4 years together, 3 years married with the love of my life. With the other half of my soul. The person who resonates so deep within me that I will go through hell and back to have him even for one more day.

Frak cancer.

Frak brain cancer.

Frak tumors.

Frak chemo side effects.

Frak doctors who don't think he is worth "saving".

Frak insurance companies that think he is too expensive to keep alive.

Frak the drama.

Frak the bad nights and bad mornings.

Frak the tears.

For 3 years I have had the honor to be married to the person I love more than myself.

For 4 years I have known the man who changed me, and believes in me, and loves me.

It is bittersweet, but I am happy and thankful for every memory- happy or painful.

Happy almost Pi day, indeed.

Depths

I feel my husband is no longer "there". It's a person I don't know living in my husband's skin. He's angry all the time. He's sad. He hates to "do" anything that is not play or fun. He won't have a real talk with me, and all my own concerns just become sharp barbs for him to cut me with.

Today, he said if I had stayed on the anti-depressants I would not have miscarried.

I can't handle this. It hurts *so much*.

I don't think I'm ever going to be having sex with him again. We sleep in the same bed still, but we don't even touch, unless he is taking the covers.

Yesterday his new nurse came for the first time to help him bathe.

He's still HERE, but the person I love is gone.

The man I married would not say those evil words. I know it's not "him". That's the cancer speaking again.

I hate cancer.

I am just so tired. So sad. I want to go to sleep and just never wake.

Cancer is not a good death. It does not give dignity.

It takes and takes and takes the very things we love. The parts of ourselves we can't function without.

I wonder just how much "Wash" is left? Is there any part of him that still loves me? I know he remembers who I am, but I don't think he remembers what I mean/meant to him anymore.

It's not fucking fair.

He's only 27. This is just not fair.

Hopeless

It's been a while. I've thought about making a video, trying to see if that would be easier. It's not. None of this is easy.

It all hurts. Everything hurts.

I should not have given him the ultimatum. I should not have asked of him anything. I should have left my image behind of who he was and made peace with that.

My mistake to live with.

I demanded from him recognition of myself as a person, someone independent of him with her own thoughts, and desires, and wants. He asked. He asked me what I wanted. I told him.
Gave him options, wrote a list, said it 11 times in a hour, gave him the name and number of who to call for help... and then just could not take it anymore.

Yes, he did in a way try to make me dinner. Thursday.

It did not happen.

I did not help him (outside of caving and actually physically mashing the potatoes for him). I left him alone and spent days watching him put off and half ass something he was supposed to be doing for me, until he could no longer procrastinate and had to make emergency phone calls to friends (more than 2!) to help him out.

He says it was a lesson he needed. He said he needed to see and feel for himself all that I do- every bit that I pick up behind him, take care of his needs, remember the details, leading the follow-through to make certain things have been addressed.

We did not have the meal until Saturday.**

My asthma exploded through this. So much stress it felt like my lungs were collapsing. My mum took me to my doctor on Saturday (that or the ER!) and I'm back on steroids, but also breathing again. Having dreams of being tossed out of an Airlock and suffocating is not really my ideal way to rest.

We have a few new counselors from Hospice to help with grief and such.

It is occurring to me quite roughly just how much my husband has changed in a year. Just how far further he has fallen. How much more help he needs, so much more patience and repetition. I am left feeling more and more worn. I feel used and less human.

I miss my husband.

I miss my friends.

I miss having goals, and wants, and desires.

I miss how pain-free (comparatively) life was for me 3 years ago.

I'm stuck now and there is no good way for me to get out sans scars. If I truly treat Wash like how he *needs* to be, then our marriage is over. I'll be purely the Nurse/Mother and we just will not be able to have that intimacy between us. I *have* to infantalize him because that's what the fucking brain cancer did. It stole my husband. It took the person I love so much. It took his higher functions away. It left me a body of a man, with the memories of a young adult, and a mostly destroyed frontal brain.

I've been pretending so hard. I've been giving up my own life to prop up a lie.

I wanted to believe that he would get "better". That he would become aware. That he could get back to at least being able to look after his own self-preservation.

It has not happened.

I'm left with a shell of the man I swore I would be with until death. I'm left with the anger, the pain, the fear from him all directed in these 4 walls, which all comes down on me.

Brain cancer stole my Valentine.

Honestly I don't know if he'll be here in a year. Days like today I'm forced to really look at a clear future and he's gone. He's not here. I have no card. I might get a chance to get a real one for him today, but I'm eating the pain of the knowledge that he did not remember anything for me. He simply cannot remember. Not on his own. I'm learning that he doesn't consider me that important. It's easier on him emotionally to get lost in a story or pretty movie, or a Wargame than it is to take the time to empathize with his wife. He's said so.

My needs as a human, as his wife, are less important to him to even hear, than is it for him to complete the next level of "Prof Layton" on his DS.

That's brain cancer.

There's no way to stop the pain or hold it off. It's coming.

I'm down this week to less than 6 hours of sleep a night. No naps for Tashi. No respite.

I feel like the glamour is slipping; the cracks show. I have to be the one to suck up every insult he throws and clean up after every mess.

Saturday I spent trying to clean up after Wash had ----------- doesn't even matter. 4 hours of laundry "fun" time.

It just all hurts.

I can't even take the time to cry or mourn. I don't have time to myself. It's always for Wash. He needs me and there is just no one else here to carry him for me.

I don't want to remember today. I'm thinking of our anniversary date from 03-14-2010. That was a happier time with my husband, even counting the pain I was in post surgery. I'll take the physical pain of being ripped open for emergency internal surgery over the emotional pain of a day like today, or this last week of seeing what brain cancer has done to the man who is still married to me.

I watched my grandfather decline and go from Alzheimer's. I watched my grandmother deal with that pain. I had many a late late night conversation with her after grandpa passed (a benefit of our bedrooms sharing a wall) about her being ready to "go join him".

I don't blame her one bit. I am happy for every moment I had with her, but I know those last three years she was just waiting to die. I hope she had more than a few happy memories in the 3 years she was widowed.

I'm starting to get it now.

I was not expecting this for 40 years. I was not wanting this direction for my life.

Cancer doesn't care what you want, what you dream, what you hope.

It just eats and kills.

I'm still not ready to say "Good-Bye" and I think I'm too late now. I worry so much that my love, my husband is already "gone".

Brain cancer is an evil I wish on no human. NO ONE.

------------------------------------------------------------------------------------------------

**I am aware he "tried" this week. But he admitted he did not do his best, or even his full effort. He said he totally just half-assed the whole thing. Do I praise him as one would a child, giving him lauds for effort if not completion? That way lies the end of being "married"- he would no longer be a man, but in fact, a child in a mature body. Or, do I hold the part that is left to some account?- He admitted he could have done more, he just was literally too lazy/too self concerned to do it.

Every option comes with its own pain.

All I wanted was just a vegetarian dinner I would not have to cook or clean after.

I ended up cleaning, and doing a portion of the work anyway.

Being the Adult is tiring. Being the one legally responsible for another grown human is so, so tiring.

Hard work; I'm coming for you, Jan

So much going on and I've been trying to spend my free time with Wash, not really writing.

DES and our Insurance company is fucking with us again. I had to "renew" back in Dec and I had sent in all the documents they needed- by their own electronic system. Since there was no mailing address, no physical office they could say would accept my paperwork, and the fax number on my documents to them was given as "000-000-0000". Really, I could literally only submit these documents electronically. I have the confirmation they got the documents! (12-19-2011) So, now they are saying I never sent in anything. Liars.

They say Wash is not signed up for the "ALTECS" system (long term adult care) when I have a paper from the DES office dated 12/09/2011 that confirms he was in fact accepted into that program.

Today, they say they need copies of documents from 2010- 2 fucking years ago! Also, they HAVE these documents, as I sent those in back in 2010 and Wash would not have had coverage if I hadn't sent them in! Logic fail!

They have also made our Hospice Social Worker wait almost 3 hours for a meeting, then cancelled on him. I am beyond pissed at how we are being treated, but he tells me to stay calm and let them handle it. Wash is on Hospice, it's not like his cancer has been "cured"!

They've stopped our Food Stamps as well during this. The last funds I received for food was Dec 6th. Everything since about Christmas/New Years has been out of my own (empty) pockets. (Hospice is bringing us a food box tomorrow. I had so hoped I would never have to take another.)

I have saved every receipt from Dec on in a little pile. I have decided once we are back on with services, I'm going to sue. Most likely in small claims, but I'm taking DES and the State of Arizona, hell, Brewer too if I can (she might be protected from a suit while she's sitting in office, I'll have to check) to court. I'm past my breaking point. This is our Quality of Life that has been impacted in such a negative way. Today, I'm out for blood.

Plans within plans, my plans will put the Bene Gesserit to shame.

I feel like I am on the edge, tipping back and forth.

When I was growing up, starting to come into my teens, my , well, let's say "friends", they would say I was one bad relationship, one lost love away from destroying the world. I was only a "bad" accident away from being that "evil genius".

I think I get what they were saying back then now.

I am not able to cure this cancer. I'm not able to save my own love, my husband, my best friend.

But, I can be the change, the cause to make sure no one else has to suffer like we have.

If I set myself to it, I could change the whole face of healthcare in my State, perhaps further.

I have this voice in my head that tells me when Wash does go, it's going to be one of two things happening to me. I'll either fall into a depression that I will not be able to ever pull myself out from. Or.

Or.

Or I grow stronger. I find a sense of self and Justice and make that into reality. I take my papers, my writing, my voice and I make noise and actions until the Change happens.

We were both born in America. The country that only a few decades ago was the ideal for "making dreams come true".

We both live here, in the land of declared Democracy.

And he faces dying destitute for circumstances of merely being alive for 25 years before a tumor grew in his brain.

In America.

Land of the Free? No, not for us.

I can't fight the cancer in his brain, turning his healthy brain cells into cancer or mush. I can't fight that.

But I can fight the system that says his value is a defined number.

But I can sure as hell fight the system that says after two years if he's not dead they won't pay for any more help.

I will never forget the day a Judge in my own state, the state I have paid taxes on every job I have worked since I was about 16, told me Arizona could and would do NOTHING to help my husband live and to "move to Canada".

I love the Canadian country. I love my Canadian friends. Someday I would love to see their beautiful country... but I live in America. I'm an American citizen. So is my husband.

He should be able to live and die in the only country he has ever known, and wants to.

I am still quite tired. I could fall asleep and never wake.

But I don't think I will ever really rest until I know that others will not be hurt or punished in the way we have been. Being young and terminally ill should not be an excuse for the Government to forget and deny your existence, your Right to Live.

I have to fight.

I can't leave this one up to Hope. I can't just "hope" someone else will take responsibility. I can't just "hope" the people at the top of the Government- Jan Brewer- will do the 'Right' /Moral/Human Responsible thing. I can't just "hope" for policy to be changed.

It has to be me.

Get ready Arizona, the Gathering Storm is approaching.

Deny the Lie

This is a busy and stressful week for us.

Wash meets with his Oncologist, his Neurologist will check the MRI he's having tomorrow (again, barring any Insurance Fuckery) and at the end of the week he goes in for a follow up/diagnostic with his Radiologist- since not too many of GBM patients will make it two years out after 42 days of radiation to the brain, Wash needs to get checked. They will do some tests to make sure he is not showing signs of developing different cancers from the treatment (apparently Leukemia is common) and check his mental status.

Wash is pretty scared of this week. I don't blame him. I'm scared too. I want him to be "stable" still. I want another MRI where they tell us, "Nope, no new tumors!". Every time we go the odds grow more and more against us, but I still have to Hope.

I have seen what happens, what is to come for the End. I'm not ready to face that yet. Neither is he.

Sadly though, this testing week always sends him regressing. He is acting about 4-8 years old for the past few days. Very very distracted, just wants to play with toys or games, not interested in talking, reading, creating. He's Depressed and scared. I'm hoping if we have some good medical news this week it will help, I'm also going to talk to the Dr about adding on another Anti-Depressant for Wash. He does not have the high Quality of Life right now he deserves or can have. We're not rich at all, I barely can make ends meet each week let alone the month, but there are things we can both do for free to keep happy- he lately has just had no interest.

I feel like shit as I have not gotten around to writing all my Christmas thank-you notes yet. Dear Readers, they are coming. Wash takes my attention and priority first. I feel bad though still, I wish I had more time or more help.

We have had some good moments in the past few days, absolutely. But, when terminal cancer is literally your life, the day you find out just how sick or stable you are can be defining. And Wash has that day every 6-8 weeks. Mentally, that is a lot of stress.

As hard as it is, and some days I feel ready to give up myself, I want to keep writing. I want this record here after he is gone. I want to be able to really remember how the days were spent, how my emotions played, and I want to recall who my husband was. Not a perfect man, but entirely wonderfully, beautifully, human.

Sadly, even daily time in the garden in the back has not helped his mood.

I have to be the one to be Hopeful for the both of us.

Short Takes 8

Betty the Blazer is back home with us! Yay!

Wash is feeling real depressed today. He's kind of stuck in the mindset that he is "useless" and "non-productive" and therefore should just die/not exist. I've been trying to explain rationally how this is not really a correct or logical statement, but he's in such a funk he's not really listening to me.

I will try to write later, but I'm really trying to watch him today.

Minor Complications

I have to take Wash to the doctors' again; he's either having night seizures again/still or has

developed Sleepwalking (which may be seizures as well). To keep myself from freaking out

with

thoughts of him falling to his death on the stairs at night or just walking out the front door, I'll

tell the funny things he does in his sleep;

*Turn off all alarms on clocks and cellphones / re-set the digital clocks

*Tried to make the bed - with me still in it at 3am

*Tried to fold a blanket- again with me in it

*Took a jar of jelly out of the kitchen and placed it on a bookshelf in the living room

He will see his Internist today and hopefully his neuro will get him in in the next few days. The

last few times it has been "not a tumor". Every single time this happens that is what I wonder

and worry about; is it time now? Has it finally come back? This cancer has a 98-99% rate of

return. It's a "when" not "if". Neither of us is ready to fight another tumor. He's had two years

post surgery. That is both so short a time and so long all at once.

It does help to explain some of his behaviour this past week. His 4 hour afternoon naps make a

little more sense.

Right now every bit of good we can get means so much. I know but I'm not ready to admit

what is to come. I'm not ready to face the pain and grief that even denial will not save me from.

This story, our story, will not have a happy ending. Interludes perhaps, but little glioblastoma

multiforme does not make for "ending" that society loves to see. There is no cure coming

down the line. I HAVE to make the best of what we have, because there is no deus ex machina

for this.

So, we are going to try and go out to enjoy some lights tonight. Do some things with the

family. It is still my job to give him a Quality of Life high enough that he wants

to live. Sometimes that means holiday light displays, hot chocolate, and Tashi wearing closed

toed shoes. And snow.

Maccababy Miracle

I still have my old VHS tape of the Rugrats 'Channukah' special. I used to watch it EVERY year as a kid, sharing with as many friends as I had at the time.

As I got older, I never really "grew out" of watching it, even as I learned more and more about the actual history and stories of Hannukah.

I have played it for Wash a few times and he seemed to enjoy it, though not the process of actually hooking up the VCR to play it.

This year, I checked online first. Lo and behold the Maccababy Miracle, it's finally on Netflix Instant View. So, we're watching my old special looking great on Wash's tv (his nice one from his bachelor days).

I think we are both trying to make today a "good" day.

There was a lot of stress yesterday, on me, and from Wash.

He was not having a good brain day. I know he was mostly "there", but he got so angry, and said such .... horrible things to me. It was disturbing on so many levels just how deep his words could cut. I still wonder; does he say the things purely as a result of the brain cancer and surgeries, or is it because he knows me so well. His words, hurtful and nasty as they are, for me I wonder just how much truth they hold.

I wonder if he remembers or doesn't sleep as well after telling me I'm less than human. After telling me I'm such a freak I could not belong to any culture on the globe. There's more too, but I personally just want to forget the meaner shit he said.

I've mentioned here before that we both (before we even got married) agreed that our relationship would be the type where we work our shit out and we would not go to bed angry with each other.

For me, it is in some ways harder to do this since we found out about the cancer, and from a perspective easier. I know, I KNOW I have to forgive and at least let my anger go before bed. Easy to say, not always easy in action. Perspective though, tells me that doing it, even if it is so hard to work past the pain of the words or actions, doing it takes some of the pain and some of the stress off of me. If he dies in the night, or if I do, we end on the note and re-affirm that we do still love each other.

I worry always. There is always a chance something will happen in his brain and he just won't wake up as the same person. Every day holds that as an option.

It is hard, so hard to let go of the anger, and work on my own hurt/sad feelings.

I have not gotten anything for Wash yet for Hannukah or Christmas. He went out and "got" me a new small tool to replace my old one, so .... it will be interesting with the "presents" this year.

My present is that he is still alive. My present is that most days he remembers that I'm his wife and his nurse. My present is a good day means he can still talk a walk with me. My present is he still laughs, and he still -sometimes- can have discussions with me.

How am I supposed to ask for more?