AparTARDISment

The photos did not load quite right, but you'll get the basic idea.

So since we got together Wash and I have wanted to do something, anything, for Halloween. Every year we've been unable, so this year I decided to make sure we did it up right.

I cleaned our door and we both worked on our "TARDIS Makeover". I think it's quite keen.

We had a small birthday/halloween party for me this evening with a few good friends and some awesome costumes. The photos did not turn out real well though, Wash had the setting wrong. However, we did have another friend taking pictures as well, so those photo copies should be good.

There was a Wyld Hipster, 2 gals lost from the 1980's, Hello Kitty, Billy Mays, "John Dough" (the 'bad guy' driver from every race movie), and I dressed as a rigid airship Captain. All in all it was a great evening, we watched some halloween episodes of Buffy and "Hush" and "The Walking Dead". Some scares, good treats, and my birthday pumpkin pie!

Yes, it was fucking delicious.

Wash ended up literally spilling his all over his black suit. He got an extra piece of pie when he changed (he decided to go as the lawyer from Jurassic Park, right down to the socks) and we all had a good laugh. I've just got to get to the dry cleaner's now, but it's kind of nice, this would be the first time I've ever had to clean my husband's suit, and thankfully it's not for his funeral!

Just spilled pie!

We go back to the hospital tomorrow to find out his MRI results. Since they did not call us this weekend I'm assuming it's not urgently life threatening. I'm hoping hard for the best case.

Right now I'm trying to give him the best and most normal time I can. I honestly think that is the best I can do for him, to give him, to make him happy. We don't know what good or terrible news tomorrow will bring, but for tonight we got to just be a couple, dressing up, laughing with friend. We got to laugh, to smile, to joke, and to cuddle. I allowed myself to just enjoy the time and enjoy the company without trying to second guess myself too much; my thanks back to my love for helping with today was to enjoy myself and let him and my friends see that.

Damn fine pie at a damn fine birthday party.

And if Wash feels up to it tomorrow we'll stop by Goodwill and I can check for a skirt that would wear nice in Rio.

(wink)

Emergency Files

Wash has not been 'himself' for a week.

He saw his PCP on Monday.

I took him to his Neurologist on Friday. She ordered an urgent MRI for today, Saturday.

Wash has been scanned, but no news back yet.

Today he also has developed a slight weakness and limp towards his right side.

It's only been 4 weeks since his last scan. That is such a short time, and for a tumor to grow, such a long time as well.

He is being monitored right now and probably for the rest of the weekend, but has not yet been admitted to the hospital. We should hear news on the MRI on Monday.

My updates will most likely be brief right now. If you know me personally texting will be the quickest way to reach me for the time being.

And if any of you Dear Readers want to send Wash (or us) good thoughts, wishes, or prayers we will take every one.

The old lane

My treat for myself today is to watch my special edition of "Twin Peaks" and stay out of Wash's way. He has a few friends coming over to help him prepare my gift, which also requires me not looking and staying out of Wash's way.

Also, Twin Peaks is a WHOLE different show than when I saw it as a kid.

My birthday was almost wholly uneventful, which is really just the way I wanted it. I was a little sad that not all my brother's called me, but it's really not that shocking as I'm the youngest.

I treated myself to 4 books yesterday and I got a nice one in the mail today from Amazon. I ended up doing 5 loads of laundry today and cleaned the fish tanks. Wash did dishes.

There's so much going on emotionally but it is hard to process, let alone write.

I'm worried about Wash, about his future, our future, and my own. It is not the end itself so much as the time table to get there. So, we'll go to the hospital tomorrow and go from there.

Obligatory Post pt 2

Happy Birthday (pie) to me.....

Only

"You might be onto something there." "It's a possibility"

Wash has begun to speak almost entirely in riddles now. Everything comes with a modifier, there's a possibility or probability to everything. Instead of someone else just "being right".

Le sigh.

He's going to get checked out by the doc today; he's not been right the last few days.

Friday was a pretty good day, he woke up well enough, and even ate a little bit. Lately he's been forgetting to eat even at my prompting. We spent the afternoon over at the Salvation Army doing some volunteer work. It was a really rewarding way to spend a few hours, and Wash really did do his personal best to chip in and help as well. For me, the best way I can think of to describe it is as a big emotional orgasm. The feelings of self disrespect are taken away for a little while and you feel a greater sense of community and positive outreach.

We lit our Friday night Shabbos lights but did not get out that day- going out and talking to others like Wash did just drained him of energy. He seems to be faster to that emotional irrational edge.

Saturday he was boffed. We tried to go out to the Slutwalk, but his walk ended up going way short. First he wanted to go walk almost 4 miles! Then he was ok with trying for 2. Then by the time we had gone 1/2 of the first mile he could only go on 2 more blocks before we had to turn around back home. This did not bode well for his personal attitude.

We did spend a large amount of time Saturday together, though Wash was working on the literal very end of his short story- he has about 20 single spaced pages of his original short story (though, the idea may not be so much. He keeps forgetting about all his influences so it sounds like something I have read before, but not where I can place it). So far he has only read little bits to me. I prefer really to wait until something is completed before I try to enjoy it- as far as books and new materials go. But, this is his first story he has completed since he got his brain cancer, and it's one of the few things altogether he has completed, since his base personality likes to procrastinate as well.

We had to go out Sunday for a few errands. At the end of that trip I mention that this week, one week only it would be awesome for him to not go about talking about his cancer, the hospital, or begging for attention by playing his cancer card. Just this week. And only to me, when he is not sick.

Wash has grown a habit as his emotional response to make everything into a joke. Which, as a coping skill is not bad, but when it is the only one Wash has- it traumatizes me. Not everything relating to himself or his cancer is fucking funny. And some things really really fucking hurt. But it's funny and either Wash feels his own pain and processes it, or he jokes it off and it comes back to me. He so far the last two years has picked laughter and my own pain over his. Last night, especially after speaking to him, it was too much.

I really wonder, maybe start to believe now, I might have PTSD from this. From seeing the love of my life almost die in my arms coming home from my birthday. From discovering he had a brain tumor crushing his brain on my birthday, from what should be a celebratory day for me, into the worst memory of my life.

I want to learn to dissociate those events. I want us to celebrate Wash living, after this week. I want to claim back a happy day for myself, even if it is just one gorram day a year. Then we will go back to completely focusing on him, celebrating his every move and event.

So, back to last night.

Basically he was trying to recall a film name last night. He takes a while and doesn't speak out loud for me to help. He gets the name and I make a comment, not being funny or making a joke at his expense. He can't hear me though over the shower and proceeds to make an "Arnie" joke. I tell him "No, I am not joking, that is not funny, don't say it again."

So, he makes the same fucking reference.

And I flip.

For two years he has been making his tumor into "Arnie". Someone else. Someone not Wash. Not his responsibility, and a way to distance himself from the guilt of what he did - what Wash, my husband did while there was an undiagnosed tumor in his frontal brain. See, when the tumor got big enough it started fucking with his personality, his emotions, his motivation. And for a long period in that summer he was set to "Abuse". He physically abused me, and more than once. And emotionally abused me constantly. That is where a lot of the first stress of our extended family began to come in. I stayed, because I was truly convinced it was not Wash himself doing what he was. My family wanted me to leave. His family wanted him back home in Cali. I stuck it out with him, taking him to doctors and psychologists for months (Depression, what else could a 25 year old healthy male have?) before he had his grand mal in front of me and all my own denial of the seriousness of it went away.

So for two years Wash has been escaping his own mind by saying that the actions were not "him" but "Arnie" his tumor personality. I for a while, thought that was fine, if he could personify the cancer he could move on and process his feeling and emotions. NOPE!

So last night he makes not one, but two "Arnie" jokes. After I ask him specifically not to.

And then he got very very very mad at ? (me? himself?) and argued with me for a few hours. He would apologize and then take it back.

I asked for some time alone. I calmed down. We tried to talk and he just kept shitting on my words, seeming to me almost of pure spite. Not my Wash, not my love. I had asked him not to mention his cancer this week, and to drop the 'Arnie' bit. He didn't. He kept saying it was my issue to deal with, this is the "real world"

"No, Wash, this is our home. I don't expect that from others, but after 2 years of responding negatively to that every time, and after explicitly saying don't do it 5 hours ago, and then telling you to stop after you say it, and you did it AGAIN."

"But that's your problem to deal with."

"I am dealing and I do every time I go outside. But this is my home, and you are my husband. You should know because I tell you."

But he HAD to be 'right'.

So, for the first time in as long as I can remember we went to bed without saying "I love you." Terrible dreams. I slept like shit.

This morning he wakes and apologized. Says it was all him and he just kept wanting to push the hurtful truth aside.

I am taking him to the doctor's today. I don't know what is going on, but I am scared. He had an MRI at the start of this month. I am far too aware how fast a tumor can grow in 4 weeks. 4 weeks of his anti-seizure meds being tweaked, and I think he's still having them. He complains again of 'cotton brain' and feeling like his limbs are not part of his body. Maybe it is not the right med anymore, maybe he has too much, too little? I just know something is off and the numbers right now just don't hold hope. 24 months in with GBM 4.

I am beyond terrified at the thought that it might just get worse from here on out. It is terrifying to not know, and the knowledge itself as any of my nurse, doctor, or brain tumor readers will agree is not the lightest thing to bear either.

I've also made the decision to talk with his doc about some kind of Hospice nurse I could get to be on-call here. His doctors are great, but they are all M-Sat kind, unless he goes to the hospital. Which, he really really really does NOT want. Having a nurse on-call who knows his medical case would be helpful for me, and as I'm the caregiver, this one is my call. So far he seems to agree with me on it, but we will see how he reacts when he has to meet the RN.

So, birthday week again. And again, I'm here wondering if my husband will live to see it, and outside of a hospital. Yes, that's one worst case, but this is the worst of brain cancers. The tumor WILL come back at some point and likely kill him, or lead to his death.

I dislike feeling guilty that I want the focus to be me for one day, my 25th birthday, in- well, a year.

I was hoping for one day of not feeling like a burden, for having value.

Birthday wish?

Never ever gonna happen- Ground Force shows up and gives me a new garden. I still don't have one after ours was destroyed in May/June.

Might happen- Fox releases the rights and I get Freakylinks on dvd/blu-ray/VHS

Could happen- I get birthday cards. After my grandparents died, they pretty much just all stopped. I like cards.

I'm guessing I won't know more about Wash today, he'll probably just get blood work done, maybe an EEG.

I'll keep going, but some days, it takes me a long while to remember why I do.

Short takes 6

I spend all week racking my brain trying to think of something for ME, something I want for my birthday. I let my mum know today, she says, "Oh, that hardly counts, think of something else."

Crap. I am really really bad at materialism.

Wash is having a tough day. Slept through 3 alarms and me trying to wake him.

I let him go downstairs to brush his teeth by himself and take his pills.

About 20 minutes later I go down to check, his pills have been taken, but his bathroom light was on as was his faucet.

He did not remember turning it on or off.

I'll write more later, he needs me this morning.

Back to basics

Wash's med adjustment has left him more tired lately- common side effect. I've been feeling more tired lately, feeling like I have to do a lot more, worry more.

I spent a good chunk of time cleaning fish tanks this weekend. Scrubbing algae and cleaning water, protein skimming... Wash spent 6 days putting off cleaning the cat boxes and then almost 2 hours bitching before he cleaned them. The meds seem to make him a lot more whiny in the mornings. I've been switching to having him do his (like, 3) chores in the evenings.

I've also been trying hard to make sure he/we are getting out every day for some kind of a walk. I feel so lax on my exercise lately, and Wash won't get out of bed unprompted, so it all falls on me to be my own motivator and his. Hard stuff some days.

I've been trying to drive a little more lately to make sure I get over my fears/trauma of the tire blow out. I've noticed that I've become a lot more sensitive about night driving as well, which I haven't been since about '05 when we had the Baseline Rapist/Killer (s) out. I partly also wonder if my vision is getting worse and perhaps that is contributing towards my hesitation to drive. The weather is calming down some but not enough yet for Wash to really get to spend a lot of time outside.

We started to watch 'The Sopranos' this week; we're about halfway through the first season (neither of us has seen it before) and so far I find it hilarious. I imagine it might have some darker plot lines coming, but to me watching it now, there's just a level of humor at the writing I can't deny.

So far I've managed to go halfway through October without a major pinkwashing/cancer mental break. I'm happy and proud for that. I've separated off contact with a few people who I know would say some stupid shit this month and I have a core of good friends around who 'get' how the Pinkwashing makes me feel. All cancers suck, true... however it is brain cancer that is going to take my husband and I wish it would get even half the attention/awareness.

October also marks my birthday- coming up at the end of the month.

I always seem to get (extra) depressed around then. I don't think it is seasonal as I love fall and winter and spend time outside. It is just clockwork since I was about 6 or so that the 2 weeks or so before my birthday I just feel more depressed, less social, more anxious...

I just want it to be over. I am always expecting something horrid to happen, and honestly almost losing Wash on my 23rd was beyond no fun. Breaking my arm for my 8th. Having a family member forget my 16th. Being vomited on by someone on my 10th.

I don't have a real good feeling relationship with my own birthday.

I'll be 25 this year. Young, it was how old Wash was when he was diagnosed and given less than 2 years to live. At the same time, I've lived lifetimes in as long as I have been alive, I feel this absolute divide with my youth now. Somehow it is all done and wrapped up, no more 'kid fun'. I feel robbed to a degree. This unfairness of life, which cast me so mature so very very very young has yet again found a way to toss me to the side of what society tells us is 'success'.

Some things in life change, mature, grow. Some things stay static. Both can be good or bad or even both.

I just don't know where I am anymore.

Surrender

I haven't written in a bit.

I've been doing a lot of quiet thinking lately, reflection, and self panic.

I'm having birthday related panic set in. I'll be 25 shortly. I feel 20 years older than that. I feel like this should be a mark between "youth" and "true adult"... and yet, I don't feel like I contribute to society. I feel like this began two years ago and I've BEEN "grown up" this whole time. Part of that is realizing that as an adult I won't always have the answers, even if that's what I think partly defines an adult, someone who knows.

I don't always have the answers. I didn't make the connection earlier to Wash having seizures again, even though I saw the end results. I am not a doctor and I'm not a neurologist. I don't know it all, but I have to know enough to keep him alive, safe, and happy.

So, Tash, let's go into what happened this weekend.

We got lost on the way down to the wedding. Wait, let me start earlier; we were an hour late getting on the road in the first place, thus starting my stress before noon. I wanted to make sure we had LOADS of time to find the place and get settled. Then, well, we got lost a few times. First the wrong city, then the wrong park entrance to find the actual site. This also stressed me. Wash was not able to navigate and that just, it was unfair of me to expect that from him, but at the time I could not see it. I had to stop the Blazer several times on the rough roads and turn around. (Note to self, pick up really good state/city map for car)

So about 30 minutes before the ceremony was to begin we find the right place (and was charged $9 to enter, something I really wish would have been mentioned on the invites) and park. The couple decided to have the ceremony itself at the Red Rock State Park in Sedona. It was literally picturesque. The guys were dressed in browns and deep reds and the bridesmaids were in these soft red flowy dresses. The bride was beyond beautiful. I really hope I looked that wonderful at my own. She was so happy as was he and it shone through. It was a lovely ceremony and just a moment I was so glad to have been part of.

The real trouble started after the reception. We had to leave early to make the drive back down so Wash could get his meds. And we got lost again. I had not eaten much all day. Wash needed his pills. Stress building. I find a little sandwich shop that gives me directions back and I head towards town and lights. We're out in the country here and there were not really lights around. When we got back to "town" and a stop light I do what seems legal and prudent and stop at the red light.

BAM!!!!!!!!

That's when we were rear-ended.

It was an older truck and the lady driving looked to be about my age. She was smoking a cig and shaking. No one was hurt, but I did learn this was not her first accident and copied down her licence and plate number in case she gave me bad info. I could not check the back of my car then, there was just literally no light.

So, we buckle back up and head back out.

20 minutes later and 30 miles of road between us and the nearest town and I see the freeway. We pass a small gas station and then get on the on-ramp.

BOOM

The car veers hard to the left and turns, almost tipping over the side of the ramp. With no guard rails on it. I hold the wheel at firmly as I can and steer the car into a line along the "shoulder" on the left side of the road. We've come to a stop halfway down the ramp and a foot away from going over the side. It's a least a 30 foot drop in almost total darkness- terrifying.

My front driver's side tire is gone. I can see my rim and a small bit of rubber left at the top- the rest was just shredded.

Mentally I am a wreck. Two car accidents in an hour, leaving me at 90 miles away from the city, from help, from home, from Wash's pills, from food.... I called AAA and my mum. After going back and forth with both parties and my very limited options, we were towed back to the small town and my parents started the drive up to pick us up.

The tow driver was as helpful as he could be. Apparently he was off duty and heard the local call go out and noted it was a medical case (Wash needed his pills!). The driver's little brother also has seizures so he hurried to us to make sure we were taken care of. He also scared the fuck out of me by saying that the cars he usually picks up on that stretch roll off the ramp or blow out on the freeway... and he usually just gets the cars (ie no people survive).

FUCK!

We came close to DYING. My first tire blow out (not a slow flat) and it happens in the place that could kill us, but didn't.

We ended up at the Walmart in Cottonwood. For a few hours. At 10pm on a Saturday. I could write a whole post on that alone (I may, later) but for now we will say they were hospitable and warm. My parents showed up a few hours later and late at night brought us back down to the Valley. They rock. I also felt about 15 years old on that ride home, but that's for another post.

Thankfully we had some good luck come in and I did not have to take a shuttle back up to the town. Some of the local friends had stayed up for the wedding and some really really really awesome friends drove my car down for me.

So we have Betty back and new tires. I learned a few good lessons and I held myself together fairly well. There were a few Aspie moments when I was just sobbing wanting to just go in my closet, but I did what had to be done.

I have mostly been in reflection the past few days, thinking of the accident, thinking of my behaviour and my responses and thinking about my own mortality. I have so little time with Wash, so little time to be a couple, to be the small family we are, I don't want to lose anymore of it.

I am thankful for seatbelts. I am thankful I don't drink and drive. I'm thankful that when my tire blew we did not go off that ramp to our deaths or mutilation, but that I did get the car under control and did get it safely to the shoulder area.

It is so easy in this world to die, and sometime such a hard climb to live.

I still think it's worth it.

Pic is from the little bank inside the Walmart. This was literally the only thing that evening that made me smile.

Huzzah! Betty the blazer is back home with us and ready to be driven! Beyond happy and so relieved!

TL;DR

Boy howdy, today! The wedding in the afternoon was super lovely, it was everything afterwards that almost killed us. Got lost once heading back home, then heading to the freeway we get rear-ended by someone while stopped at a red. No damage to the humans, minimal car damage. About 30 miles down the road about to get on the freeway home and my front drivers' side tire blows out on the ramp. I manage to get the car safely to the small shoulder, tire shredded. An hour later AAA came (guy just got off duty noticed we had a medical tag on our file and decided to help the sickies, yay!) and frightened me even more by telling me what he sees on that stretch is people who either tip and roll on the ramp or those who go off it and don't come back. Basically if the tire had lasted another 30 feet we both might be dead. 2 hours after that my parents came and got us and brought us back to the valley (home) [natch, yay for them]. So, almost 7 hours after heading out from the wedding we are home. Gorram. My car luck needs to change.

Short version. Longer to come.

Wash was late (sadly/of course) with his anti-seizure meds tonight. I'm worried if this will effect him and night seizures tonight. It was a hard day for him too. Physically he just shouldn't have to be in those situations anymore. It's too dangerous.

Not again.

Went out this afternoon to do our errands and spotted that sometime last night the driver's side front window was smashed.

Someone threw a rock at it. Totally broken.

Nothing stolen from the inside thankfully.

No prints. This isn't covered by the insurance.

On the up side Wash and I are working through our issues from the start of the week and the weather has finally broken this week so I've been able to get out more with him since I don't have to worry medically about him in the heat.

I keep thinking it's time for us to catch a real break. Some kind of good luck, or period of less stress. It always could be worse, but for our specific situation seems like every setback is just harder to overcome.

I'll write more later, I'm in no good place mentally right now.

Results

So, had some questions answered today. Good news first no new signs of tumors or dead tissue in Wash's brain. So he still has cancer, but remains stable without tumors. For GBM cancer at 23 months, that's amazing. Bad news is his doc thinks part of his odd behaviour is because he has been having seizures again at night. It fits his change in the past few weeks and his meds. So, he's getting his medicine changed around again and now I just have to worry about him seizing in the night and having a stroke or dying. Which, hopefully won't happen but for him to be having seizure activity again with no tumor is not good for his brain. It's just putting it through more trauma- which explains why he was waking some mornings not knowing who he was and feeling off.
It's good with bad, but it's not the worst news we could have heard.

It's just another notch up on the amount of care he needs 24/7 I suppose.

Been up and at the hospital since 6am. I will need a nap today.

Loose tongue

Alright, I need a safe place to say this and as it is my blog, frak it... I fucking hate the idea of "50/50" movie. I'm happy it was "inspired by a true story", but FUCK. Not everyone who is young and gets cancer ends up with 50% or better odds. Yes, statistically if a cancer is caught in a "healthier" younger person they have a better chance at survival, but it varies with every person and every cancer. Some people have to live with being VERY young and given a death sentence by their cancer. It isn't something to "overcome" in their life, it's a fucking god-damned death sentence. It isn't a "go through hell for 2 years and then be 'cured'" type. There is NO cure and there is NO long term survival odds. Long term for Glioblastoma tends to be over 2 years. Think about the mental trauma of knowing at BEST you might get 2 more years of life- and being told that at 25. I guess I am still angry.

I guess I resent most the movie is just unrealistic. There might be moments in the film that other cancer patients or their loved ones identify with, but the whole thing is just so far removed from my reality that to be compared to it just fucking hurts.

My husband is 27 now. He has brain cancer. He always will. He will never be "cured"- his type can't be! He will not hear the word "remission" and "glioblastoma" in the same sentence.
There is no Deus Ex Machina for my situation. No happy Hollywood ending. I'm happy it's the case for some people, I wish like hell it could be the case for more. My pain comes from facing my reality, which is the slow death of the man I love and want to spend the rest of MY life with.

But I really don't want to see JGL or Seth Rogan on my TV anymore, and I don't want to be reminded of the day I found a clump of Wash's hair so big that we decided that day he had to shave off what was left. I feel like even seeing the trailer on mute drives me deeper into remembering trauma. Wash hurts too. He see's the trailer and even the fucking title reminds him of what he has lost- what he grieves for; the loss of his chance at life. Someone empathize here and imagine if you were a scared 27 year old, already 'past' when he should be alive and every ad for a movie takes you on a flashback to the day in the hospital when you were 25 and just had two brain surgeries for a tumor you didn't even know was there and a old doctor with no bedside manner came up and said, "It's brain cancer, called Glioblastoma Multiforme, grade 4, radiation and chemotherapy are an option but the incidence of re-occurrance is about 98% and the mortality rate is 97% by 18-24 months."

It's a lot to bear. That kind of weight hurts. It eats at the soul just like a cancer.

I hope any of you all who want to see it go and enjoy it.

But, for me to have the positive cancer outlook just reminds me daily that my love's brain cancer isn't cureable, it's a 1% chance of making it 3-5 years. It's a horrid daily battle of my brain knowing it might be the last day I have with him and the painful hope I might get another one tomorrow. I just don't feel like I stand to watch a movie showing off the hope from how far we've come with 'cancer' and have it be so far from the realities that every cancer is different, and every person who has cancer doesn't always "win".

Who cheers for each day Wash decides to wake up and keep living despite the time bomb in his brain?

He's my heart and my hero.

/rant
//apologies to those JGL fans, nothing against him as an actor.