One, two, Princes

I've been dealing with my depression lately.

Wash is not strictly "declining", but, it truly does to me seem like there is "less" for him to live for. He's fighting, but for what? At this point he says he wants to still see TDKR. He wanted to see "The Hobbit", but I think the trailer is really honestly all he will be around for.

Brain cancer is so odd. He can complete two LEGO sets in a day, or in two weeks. His brain can still build, but a lot of the other stuff is starting to go.

I have not gotten to the point of bibs yet, but he's essentially using an "adult" sippy cup. His sense of co-ordination is worse even than mine. Thankfully no falls lately, but he's had to be better about using his cane or walker for EVERYTHING.

It helps though.

Our awesome neighbours continue to be awesome. A couple of times when Wash has had an aide over I've gone to just chat or vent at their place. (they are in the same row of townhomes we are) N.* has even traded short stories with Wash to read! She still helps us water our garden and cooks occasionally for us.

He mostly says/does the same thing over and over now. We watch the same show or movie 2, sometimes 4 times before he "remembers" he has seen it before.

"Yes, dear. Thank you. Ok, Wash. Yes. Do go on."

His anger comes in longer periods now too. Sunday night was fairly awful. Even after speaking to a Hospice Chaplain on call, it took almost 2 hours for him to really get a hold on his own emotions.

I dislike feeling what I have been lately. I worry way too much. I wonder if/how happy he is.

I worry about his rage, his pain.

I wonder if the thing I wanted most with my heart on my birthday almost three years ago is something I have to let go of now. I want him to be living because he wants to, not "for me". It's much harder to say that out loud though, than merely to write down.

He's going to attempt to see and talk to his mum this week. I don't speak of his family on the blog anymore at Wash's specific request; he doesn't want some details "out" right now, he still doesn't want to share/show his emotions.

All I can say, all I will say, is please Dearest Readers, send him thoughts of love, calmness, or even kind prayers.

Mostly what he does is say he wants to do something, but with his "drama", it is like there is a block preventing him from ever moving forward.

What I want for that situation does not really matter. I want what is best for him, what his mental and emotional well being needs. Not what someone else might want for him.

Done. Moving on.

So, when he is not taking anger out on me, he's been enjoying some time with his aides and building and filling our home with LEGO models. The cats do not seem to mind, and he really enjoys playing after he builds, it's nice when a couple hours go by and everyone is happy.

I've been trying to take some "mental health" breaks for myself as well, actually get out of the house when I have an aide to help/watch Wash. I know there is worry for me after he is gone. I worry about myself; enough to worry but not yet enough to do much more than starting to see I'll be ok if I leave him for an hour with an aide.

The future is still too painful to think about. The 'What After' part.

I've seen Death. Changes happen to a person.

I'm wondering if it's just brain cancer, or if some of Wash's changes are him moving closer to his end?

So many questions, so much wonder, so little certainty.

To some specific people who have been reaching out to me- thank you. Thank you for telling me I'm not alone in this. Some nights and early mornings it does feel so isolating, but I do try to take comfort from those who have gone before.

The very worst thing to me about GBM? Even more so than knowing at some point I will lose the man I loved and hoped to spend the rest of my life with, is knowing there is still no cure, and there *will* be others who come after who have to fight the same battles. The ACA changes some of that for those Americans with brain cancer, but these tumors hit people around the world, not just here.

I feel like I'm the only one, but at the same time, I hate knowing I'm not.

I would not wish this even on Jan Brewer.

There's a feeling of change in the air; friends all moving, new jobs, new schools, new children/life in the world.

I feel like we are the only ones stuck still while everyone else moves and dances their lives around us.

His birthday is in two weeks. I know (or is it hope?) he makes it that far. Live hour by (hopefully a good) hour, day by day that he wakes up for, and week. At this point, I'm not sure how to think or live farther ahead than that.

/Trying to write my depressive thoughts out of myself today. I hope it works.

*Not real names/initials

Never have time

So, we managed to get out on a real proper date last night.

Hospice got us some tickets to the Symphony for this weekend- a violin concerto. Part of the agreement on my part of going out (most especially for a period of at least 3 hours for this) was that Wash uses his new wheelchair for this outing. And not bitch about being in the chair. (It's been causing some issues this week, more on that later)

To top that off Saturday morning I get a call from one of my really good friends from High School who knew the Conductor to the symphony- and she has made a call or two for us so we got to meet the Conductor before the performance! It was quite the experience. We also had our seats "upgraded" to the wheelchair area of the hall; it felt like the music was coming right at my ears, so lovely.

We ended up grabbing a couple sandwiches on the way home, and got to make use of the Light Rail's wheelchair access. We were out for just about 5 hours. Honestly, I think outside of spending the day at the hospital we have not been out of the house that long in maybe a year or more! Also, best as I can recall outside of our dinner out at Applebees, this would have been our first "date" since around April 2011. It was nice. We held hands for a large portion of the night.

I have also learned that his chair needs at least one pocket if not two and a cup holder for him. I also need to give myself a breathing treatment before I take him out in it up any hills. I do feel like I got my own exercise in last night. But, I think the point of the chair worked- we were out for 5 hours without him feeling tired, without him needing a nap, or to slow down for anything, he was able to be out and participate in society- the very thing it was designed for.

We've got a bit of a busy week coming up too, so it's a lot of pressure, but I am able to really feel hopeful over this time. As scared as I am, I have people around to at least offer me emotional support right now. I have needed, and I do need that.

Now we just need to have a small fund-drive to get some spare monies so Wash can "steam" up his chair.

-He's been talking to the Chaplain and Social Worker and they told me that it would be better for Wash to have me put the chair away as much as possible until he either got used to being in it or until he could really customize it to something he feels comfortable with and like it is his "own". My brother is willing to help him physically do some of the work (like painting the chair and helping to get a nice cover for the seat etc) - we're all trying to make this process easier for Wash. It's not an admittance that it is "the end", it is just about making full use of the tools, people, and programs that will give him a happier time at the end of his life.

I've been personally trying hard to cope with this, or to challenge myself to really identify what parts bother me so I don't hold feelings of negativity towards "Hospice" in general.

I have overall been encouraged and renewed by having Hospice in for this past week. It will take time for sure before I feel more rested, but right now I feel like I have someone in my corner to take over that fight when I can't, or when I have to put Wash first. I feel like they are allowing me to really put Wash first. Yes, emotionally it does hurt, but holding onto the good that they do and bring into our lives helps that pain.

Thank you all, Dear Readers, for your own words of encouragement and sharing your Hospice stories. They do help.

The good, bad, and great

This will be a short update as it is late, has been a LONG day and I just can't type that much, my wrist has been hurt a bit. More details and photos to come for everything.

The good; Wash's parents and brother came in for Christmas and it was a really pleasant trip. He only had one night of sleepwalking since they have been here and has managed to stay on top of his naps and meds, despite the distractions. He got to spend some good time alone with them, and we all spent some nice time as an extended family doing Christmas and Hanukkah stuff. We did some small gift exchanges and spent time catching up and even getting my backyard and garden sorted out. It was an encouraging trip and I know Wash really enjoyed the time. I know he has been missing his parents and also been really wanting to see his brother, so it was so good for everyone.

The bad; I made a mistake past Friday and went driving without proper ID. We were stopped and I was handcuffed and detained by the police for about an hour. I was only cited for one thing but they towed my car since I did not have proper documents to drive. So my car is in impound. I'll go into details later; I was sober, it was 3 blocks from home, no one was hurt, I was not arrested. I made the mistake to drive the few streets without my purse that night, though I do have very strong negative feelings about being handcuffed as I was not posing any threat or hiding my identification at all, I just did not have the "proper/acceptable" form. I'm going to court tomorrow and with luck will have my car back. This will cost me.

Speaking of cost, also part of the bad got the/Wash's MediCare statement for Sept-Nov. We owe about $550 in costs for doctor visits for him. That's the uninsured part. It's still shocking to me that these are the costs when he is not even on active chemo. These are his mostly "healthy" costs. I've been talking with my mum, I think when he goes on full time Hospice help I'll have no other choice but bankruptcy. Adult pants.

The great; So my In-Laws helped to spend a couple hours in the backyard cleaning and clearing away the crap and making it tidy again. They helped to transport some new plants I bought with my birthday money (Home Depot gift cards, my friends know me) and then I spent more than 3 hours working and planting and transplanting and moving the garden around. There are a bunch of flowers now- I even spotted a hummingbird today! I put in a few more vegetables and seeds, and bulbs, as well as bought a large mature tomato to replace my 3 year old one (destroyed). I also invested again in jasmine and gardenia bushes. The small porch has been cleared and soon we will have our little chairs out to sit and enjoy. I also put in the solar lights I got for my birthday from my mum around, and it looks amazing at night. I cannot wait until the spring.

The other good part, to which I also have photos is that we got some WONDERFUL holiday cheer from www.thinkgeek.com today. Apparently some of the "worker monkeys" read my blog here and know how HUGE geeks Wash and I are (as if his name did not give it away). (Hi friends! You guys rock!) and wanted to do something for us- they did "something" alright.

We got so many wonderful geeky things! New shirts! Chromosome towels! Adipose toys! Mad Scientist building blocks! Toys for my nephew! (he is going to LOVE his food-heavy machines and the jet plane bib, his dad is a pilot) We're going to give the Neuron Plushie to Wash's neurologist when we see her in about 2 weeks. (I bet she will laugh, she has such a sense of humor) I am keeping the Ebola plushie, I frakking admire filovirii, plus it's cute. They also gave us the Blue Sun 'travel' poster SET, which I cannot gorram wait to frame and put up. Nathan Fillion's giant head in our Serenity poster should be jealous. They also sent a treat for the furry legged ones in this house; a 'Cats Attack! Cityscape scratching post. I will have to get a video of Leto attacking it.

We love www.thinkgeek.com and have for years. I've been treating myself and my (step)dad to their toys for years. It's a great company and now I am even more so convinced. Geeks are a special breed and I truly love and admire how they (we) come together as a community. Our season would have been a lot less jolly without their intervention. I cannot even fully articulate yet just how thankful I am to them for this - the gifts and the moments it gave us. These are two happy and so thankful Browncoats.

So, more details and photos to come, but there's the last few days for us. I hope all my Dear Readers have had a safe holiday season, regardless of family, distance, or geekery.

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.

Keeping secrets

I came to a realization this weekend; one that is simplistic and complicated at the same time.

Life must be unfair. There is no way- believing in a deity or no-for life to BE fair. Fairness implies some level of choice; either on the giver or receiver's end. Some things, some of the most basic things, there just is not that "choice" that is held in an illusion.

Wash did not choose his cancer.

He did not choose what type.

He did not ever choose when it came.

He did not choose the size of his tumor.

He did not choose the location.

He was "given" the choice to live or die. Duress takes on a much more living definition than flat words in a dictionary.

Wash spent a lot of time after his EEG recovering. The neurologist says it did not show evidence of epilepsy, but he did have physical sensations and issues on his right side after a light test; so there is something going on. He has some specialist conferencing about what new anti-seizure medication to switch him to. I know a clinical trial was mentioned, but I'm not sure if he qualifies due to his cancer status.

We have had some good moments lately. I hold onto those. I need to write about them more, find a way to hold on- there will never be enough for the short time I have my husband.

We spent most of a day watching "Fringe" in bed. He was still very tired and in a lot of pain on his right side. We watched, looked for the hidden Watchers or Auggie (August) and cuddled. We spent a lot of time in the moment. For us right now the future is so uncertain and painful to imagine; it still physically hurts to think, to mostly know, I will be a widow in my 20s. Thoughts hurt. The future will hurt. So, we spend time in the now.

We spent some nice time as a couple. Just a few walks, I cooked a little more than normal, and some extra "adult" time; time we both enjoyed getting to spend. It did not feel rushed or pressured, like we 'had' to. I simply tried to be in the moment and to enjoy sharing that moment with my best friend, who is also my husband.

Sunday was nice; Wash had not felt as good as that the whole week; his physical strong point. Mentally he was a bit slow, but I have helped him on those days before. The morning I spent in the kitchen making some vegetarian Crock-Pot chili / bean stew. We left that to cook and make our house smell awesome, and get me away from the Fair down the street with thousands of people. (I'll have to deal with that shit again come the New Year's Eve block party/Fiesta Bowl)

We headed across town to my brother's house and got to play with his new home theatre system; Wash had never seen "A Clockwork Orange" before, so we figured as good a time as any to see it! He seemed to enjoy the film, at least from a directorial standpoint. We came home, drove without any real trouble thankfully and noticed my odometer was close to a really cool number; though we did not hit it that night.

We came home for dinner and had a friend come over with his version of meaty chili- I had also made a cornbread with honey-glaze. To say it was a hit would be ... underwhelming the passion with which it was consumed. It was cold and rainy outside and the chili was warm and so delicious. It was a really fantastic evening, and in a week we should hopefully have one more for dinner- our friend comes back from Argentina at the end of this week. I cannot wait to hear all her grand adventures and see the photos.

We ended the evening with cookies I made and some lively BINGO games.

Today dealt with the neurologist again, and another rainy day. Though, we did get to drive the extra mileage needed to make my little Aspie brain so so so happy. 16 years old and my car hits this;

There's always more, but for today, I'm trying to just hold onto the good and happy and lucky.