Just a tease

So today we got to chat with Aaron Douglas (Tyrol) from BSG/ every other Sci-Fi show. Wash was overjoyed and I got a compliment on my Starbuck the Riveter "So Say We All" shirt. And perhaps developed a little crush on him...

We also got to chat for a while with about half of the crew from "The Guild"; really a fun and caring crew. I even interacted with people!

I got RK M from http://www.somethingpositive.net to do a quick Choo-choo Bear sketch for me. Other odds and ends and autographs.

Of course, biggest moment for us today was meeting Mr. George Takei.

So, rest for a while, eat and then dress and back we will go tonight for Geek Prom.

You can see more pics I have up on my twitter feed here; http://twitpic.com/photos/RedTapeLass

Wash's Words

Today, I watched Tashi deal with the impending ComicCon anxiety. With our recent gift of full-event passes, my own worries of taking her through a crowd of 24 thousand people grew.

The Asperger's attack started with her becoming incredibly moody near this afternoon. She would swing from cranky moodiness to paralyzing anxiety to holding back tears.

A great deal of this stems from her dislike of crowds. She talks about fears from crowds of people that she can't relate to. She calls it "not knowing the protocol." It's a world she has no knowledge of it, no control over it and it absolutely terrifies her.

In the afternoon, she would start pacing the floors, unable to relax. Should she sit down, she rocks back and forth gently, yet still responsive. The depth of an Aspie's anxiety attack can take her below a responsive level to near-catatonia, but I feel pain seeing her like that.

On the train ride there, her eyes darted around the train cabin, looking warily at me and the door as we saw people on the ride over clearly going to the Con. She doesn't talk to them or acknowledge them, but clutches her purse and my leg, her face stoic, but hiding panic behind her eyes.

Upon arrival at the Con, she took off in a rush towards the door, sternly asking me whether I knew where I was going (Like the guy dressed as a Jawa was really going anywhere else). She became even clingier through the doors, digging her hand into mine when grabbing onto of me on the full escalator. Once she had found a booth for a webcomic she'd reads, she lit up (or covered over her fear) to step up to a booth to say hello.

One circle of the exhibitor's floor was plenty, so Tashi and I left in a hurry, sneaking off to take the elevator, away from the crowd leaving the convention hall. Slipping off southwards, it took multiple assurances that the train back lay in that direction. On the ride home, she focused on trying not to puke, whether from anxiety or other causes, I don't know. Halfway along the walk from the train to our home she burst into tears, as she had said she was trying not to do. It took a stop on the way home at our freshly opened Quizno's to really make her return to a nearly normal emotional range.

Sometimes it can be quite a wild ride, but I'll go through it every time for Tashi. I'm trying to make this convention a better experience for her, but I'm not certain if I can.

Have a good morning, everyone!

,Wash

Like Ourselves

Good / Bad

Well, Wash is so gorram excited for Con. The downside of that was he didn't get a nap in at all yesterday and we went out for 3 (!) errands on top. He slept hard for around 10 ish hours.

An upside of this was another wonderful family dinner, though with a different older brother in town than the normal one (I think he was working last night). Although we did not stay long enough to catch up on Dr. Who with the fam, hopefully we might get a chance when we're taking a rest break from Con this weekend.

I'm terribly nervous. Trying to manage and watch over Wash, and see/enjoy Con myself, get everything else done on top that normally needs to be done, and then the people.

Just, so many people.

My Aspie's was worked up a bit yesterday; Wash informed me for a few hours I was having some tics.

I am trying to trust and let some things go, but my worries just consume me.

I had some bad nightmares last night as well. Though on that I refuse to blame eating pie with Wash at 11pm. Pie is always appropriate.

ALWAYS.

I'm trying so hard to just focus on the good and happy.

I had a nice surprise in the mail the other day as well; something so cool and wonderful I just about wee'd myself. A very special novel. I will write another post on that; my love of books is a separate portion of myself, and sadly not enough to overcome my own anxiety about this weekend.

I see it on the same level as say, sky diving or a giant roller coaster; mostly a mixture of anxiety and fear and hell and perhaps some enjoyment during and then after when I am back and in my safe place. A lot of this will be determined by how well I can seal off certain aspects of my personality to deal with the coming stresses. Too much and I can get through anything, but feel nothing. Too little mental prep and I will be too out of it to make it past Friday perhaps.

This is really not for me; though there are parts I am trying to enjoy. This is about giving Wash hopefully some memories he can hold onto and recall. This is about giving us moments together. Seeing him happy and smiling, and me going all fangirl around certain people *cough*Wil Wheaton*cough* and us getting to just be our geeky, nerdy selves.

The first movie we ever watched together was Serenity after all. We both had it just about memorized and it was just a sealing of the moment that we knew how "I" was to become "we".

We love each other. We love the same things and people and places.

This is what I try and remember to keep calm. I soothe myself by listening to the Wash that is in my heart. The one who still remembers every date, every kiss, every step taken together. Having my Wash to physically be around helps me too, again, hoping that it will all help me to just relax and enjoy.

He's napping now next to me. I love watching him sleep, so handsome. I never tire of seeing him smile and light up, I picture this weekend he will be doing a lot of it.

Aside

We got a vunderbar visit tonight from our "whole" normal crew- a composition of his friends and mine- our friends. It's been ages since we were all together, so it was so nice.

More so than just being able to be around a nice group of friends for a couple hours they brought us a gift;

We're going to Phoenix Comic-Con!!

Whoot!

We have passes for the days and a few extras to get photo ops and such.

Wash is/was beaming.

So now I have two days to get my costumes ready. Wash says he is just going to wear his kilt the whole time.

It is so shiny to be able to have something good for him right now. He's been needing it.

-Oh, and hells yes I am excited about going. I'm just more relieved to see how happy he is and some of the stresses come off my love. That part makes it all good for me.

Resigned Sigh

No go.

Insurance as of today is still denying to pay for Wash's MRI and Dr office visit.

Apparently according to the Dr office front ladies (Who we LOVE and adore, they go out of their way to always try and help us) they spent almost an hour trying to get Wash in for his org scheduled scan.

S. who was in this morning said the guy over at the insurance company was "quite rude" to her when she was pointing out that they (AHCCCS) fraked up and the patient shouldn't suffer for it. B. who was in last night and the afternoon is also going to try again in a few hours to see if Wash can still get in for a scan this week.

Argugh.

Poor Wash. This is just not good for him in really any way.

Until society regards Healthcare as a Human Right this will keep happening.

Seems almost out of a skit show on TV but this is real life. This is OUR life.

"Hi, Dr X here, need to schedule..."

"Computer says 'No'."

"Ok, but I'm this patient's doctor and I'm placing an order for..."

"Computer says 'No'."

"Patient HAS insurance. I've put in the Prior-Auth!"

"Hmm... *types* ... computer says 'No'." *Coughs*

Complications

Gorram it all.

AHCCCS "cares" my arse.

March 29th 2011 his Neuro-Oncologist put in for an 8 week standing order of an MRI- scheduled for tomorrow May 24th.

Apparently the insurance company -AHCCCS- decided that "8 weeks" meant 20 ish days. They cancelled/expired the order for Wash's MRI on April 16th.

Not his Doctor, his INSURANCE cancelled it.

His doctor's office told us at 4:26pm our time today - getting his paperwork ready for tomorrow someone noticed that the insurance had marked that they would not pay for his MRI (possibly the Neuro consult after as well, never heard back).

We were never notified before this time there was any problem. We were never notified by the insurance and his doctor did not notify us back in April there was a problem. Quite possibly the insurance company did not actually inform the doctor's office in April they cancelled the order. Hopefully I can find this out tomorrow.

Luckiest option is that a new order can be rushed through and approved for end of this week, and that we can get a new MRI scheduled last minute as well. Possibly he might get in to be scanned in a week or so paid by insurance.

If they drag their heels and say it won't be for two weeks or more then I will cry for a little while and figure out what to sell to pay out of pocket.

This is brain cancer. He really can't 'wait' on this one. Unlike some other cancers, this one can't be seen just everyday, or with an X-ray or Ultrasound.

Sigh.

Wash has withdrawn since then. I'm worried. I hate how someone else's shit can hurt him physically and psychologically.

What else? Hasn't he been made to suffer enough?

Another night of sleepless rest and holding my husband telling him it will all be ok and all be alright, not knowing if that is really true.

Tues is wash's mri and we are dealing with the issues that brings. He is scared so good wishes or will are appreciated. Frak you cancer.

No lack of colour

Yet another bad night for us and the record pile. Did not even try to go down until almost 2am and Wash was still up/not feeling right at 5:30am. Poor guy. He finally got some rest as did I, but we really don't/can't have a "normal" schedule.

It is just too hard to try and make his body adjust to a clock; it pretty much controls us.

So, had a bit of family issues this week. Don't feel like addressing right now.

The kitties are staying close and lovey this week, I think they can tell when emotions come out. We have had so many friends/other people we know with brain tumors not have a good past few weeks. I can't help but feel lucky and so sad at the same time.

Yes, my husband is still around a year and a half after his brain surgery and year of chemo/radiation. This really means nothing I am learning. He might be around for another year, maybe three with me. He might be gone in 6 weeks.

It is so hard to try and live for every day, each moment and still try and prepare for some kind of "normal"? life as well.

What about school? A career for me? Family?

I feel so lost often as there is just no direction. Every thing that society tells us is important or holds value as a human is fairly lost to us- we are continually told that it is a "waste" to keep us both alive.

Sometimes I really wonder if they are right. If numbers are really all we all are; some kind of intrinsic value that others can see and quantify- how much money you can make or be worth, how many children/next generations you can produce, how well one does their job or cares for another... and at this point I don't even have a garden to grow and give food from.

For those of you lucky enough to not have to rely on the kindness of others and the system you have paid into to protect you... you might not be aware of how demeaning the whole process is. How every few months I not only have to relive the nightmare of what I went through when he got sick, I have to tell people explicitly how sick my husband is, how much of a guarantee it is that he will die soon, and of a very horrid type of death at that. I have to confirm my luck that he is still alive and with me, and at the same time remind those who have the power to help him live or die that he is dying and will die FASTER without his medical help.

I have to expose my whole life, all of our decisions. I have to explain and validate my choices in the care of my husband in the last however long of his life.

I have to clearly say over and over that in fact, I cannot make ends meet, that I need help, that we are not getting any other nice services.

I get to explain that $8/day for both of us in food stamps is barely enough- keeping Wash's weight up is so vital for his survival as well as the fact that even condemned men get to choose meals- I am sick of having to defend my choice to keep my dying husband happy with the foods that he can eat, and enjoy eating.

I am just so sad and angry and tired. So much paperwork to file, so many threats by my State to just let us die.

It hurts to feel so alone, just not understood.

We are not like the other friends and married couples we know. We do not have those lives, those options open to us. We are not like those who are 4 decades older than us who also get this disease and have to slowly die, watching their lives disappear as the cancer eats the brain.

I'm going to be 25 this year. Hopefully Wash will see 27.

I feel 50 years older than I am.

I feel like I have been cheated out of a life. Out of Hope.

This is part of what a "bad day" is to us.

Short-Takes Petal Power

Police came over yesterday and took a full theft report. They did not seem that hopeful either that our personal things would be recovered.

SIGH.

It's not summer in Arizona. Even if I get full mature plants put in, there's no way I will have a growing season this year.

I wish Alan Tichmarsh or Ty Pennington would show up or the like- "Hullo, we hear your garden was destroyed, let's make a new one for you two!"

Poor Wash. He is not talking as much right now, and I know this is hurting him a lot. He just doesn't want me to feel even more burdened.

Mostly paperwork this week to make sure insurance stays in order. Though, with Arizona even if my paperwork is perfect and filed correctly and on time they can still tell us to Fuck-Off and Die.

I have to hope that somewhere along the lines of automation and "profits" perhaps there will be a human who can also recognize that wanting to live, the most base directive of life, is not "wrong" for my husband and I to want.

It's not "wrong" that my 26 year old husband wants to live.

It's not "wrong" that we are poor.

I think what is WRONG is my state and my government making me choose between medication and life, or money TO live.

Repeat, sigh.

Before/ After

Every time today a commercial has come on for gardening etc I've almost started to cry. Going through the photos is so gorram hard.

This is one of the best shots I have of the complete raised garden BEFORE (I have plenty of others showing off all my plants and backyard)

And of what my "raized" garden looks like NOW.

All of my work, all of Wash's, all of our love and nurture for things to grow... just gone.

Update on Garden / Advice?

Some people have been asking for more information on our story;

Background;

We live in townhomes- shared walls and a shared back area divided by a 7' wooden fence around every unit's own backyard. There are no gates/access EXCEPT through the home/unit. To access a backyard one must come in either through the house or jump the 7' fence.

We are home most of the time. I am my husband's caregiver and he is in palliative care for a Glioblastoma Multiforme IV brain tumor/cancer. Currently there are two construction sites within 500' of our home so it is quite noisy during waking hours. It is hard to tell one noise from the site with a truck in our unit's parking lot.

We have "Arizona doors" to the back (large and glass) so I could easily see on Thurs morning that our backyard was in it's normal condition. I often check out the back to see how sunny/cloudy it is for the day. That was around 8-9am. I did not look again until the afternoon, around 4pm.

The "cleaning company" was hired to 'clean out/up the abandoned unit #4' -- that is at the exact opposite end of the complex from us. To access our backyard by jumping a fence requires passing by two doors marked with our (and the correct) unit number. They did not enter our home- I had all locks engaged.

Everything that was left in our backyard were things that required 3+ people to move and could not be moved over a fence. I imagine they "left" those for when they could access the house. Everything else was taken, all things that could be carried by one person or thrown over the fence. There was no dirt left in our yard from any of the potted plants, nor a sign of any of the plants from the raised garden. All that was left were 4 yellow cherry tomatoes looking withered and sad (fruit not plants). Wash could smell the weed killer (he has worked landscaping as a teen) and the company admitted to using it to our landlady who passed/confirmed the information to us.

We did hear back from her and she said that they "cannot locate" any of our items. Our property management has offered to buy/replace all that was taken and also to hire some men to replant for us.

It's really not quite the same thing. My husband is now dying and unlike 3 years ago cannot replant it all with me. I have to go and look for mature plants and not seedlings, as I had put YEARS into their growth. I doubt my bell pepper that my grandma helped me to keep alive in her last year of life (2006) will be as easily "replaced". Or any of my ornamental items in the backyard that were from family.

I still have not been outside at all myself. I'm hoping to try later today. I just do not feel safe at all leaving. Wash has been just as badly hurt by this, but he is keeping a bit more quiet about it.

I am also even more jumpy now and just feel in general fairly non-functional for an Aspie. I keep trying to climb into my closet or find myself rocking.

Of course no matter how I feel things still have to be done and taken care of. The world keeps going no matter what pain any of us are in.

We have filed a preliminary list with the management company/landlady and they just requested us to mail in copies of photos of our garden (thank goodness I've been so proud of it, I have lots) before and after. They also want an estimate on replacement costs and then they will replace what plants they can and compensate us for the other things.

I don't see a point in getting into a lawsuit with her/the company. Aside from the lack of $60 for a filing fee it was not her mistake- it was the guys who decided not to read their order/check the address before they decided to take (our) shit. An apology would be real nice.

If this were just me 4 years ago, I'd just replant and move on, maybe a bit more OCD for the wear. However, things have changed. This garden, this backyard was the last thing my husband built when he was healthy, it was my last gift from him before the cancer ate at his brain. It was the perfect small oasis for us to enjoy, a reason for him to want to stay here and not be moved into a hospice home. It was the place where I would pull loads and loads of veggies and herbs to cook with and eat. It was the place where we would bag gallons of extra herbs and veggies and sell them at the Farmer's Market across the street. Or give away to family and friends who love to cook with fresh veg and herbs.

It was the place where I grew my 6 pound watermelon- Bill Murrayelon last year. The strawberries on top of our Valentine's Day pancakes came from the back. The smell of jasmine and gardenia soothed me so much. Wash's grill was out there with July 4th memories.

There is not a good chance we will have the TIME to replace and make new memories. That's the difference.

I've managed to lose more time with him- really the only thing I have. That is what hurts.

And the stark emptiness where our green and colourful oasis used to be.

http://www.facebook.com/media/set/?set=a.513951105801.2115797.10010291&l=42f78e405e

See-Saw

Yesterday through "gross error" some company hired by our prop man. comp came to clean out an abandoned unit.... and they got ours by "mistake". The only way this can happen is if the person in charge just plain ignored our lit and very visible address and unit number. And ignored all the evidence that our place is very clearly not abandoned.

I am beyond words. Thank goodness I have excellent locks; they just took everything from our backyard they could carry. (From what I gather they might have tried to gain access inside as well, but again, good locks.)

Then razed my garden and covered the ground with weed/plant killer.

So, all my plants are gone, our furniture, my tomato cages, watering hoses and buckets,ornamental glass bowls (antique given to me by my dead grandmum) .... and the absolute worst is they completely destroyed Wash's garden. As in the raised garden he made for me for our first date anniversary. The LAST thing he built at all (and for me) before he got sick with cancer- and it has been destroyed.

If you are a regular reader then you can grasp this. I often am in the harvesting seasons posting pics of my plants and bounty from it; my top moment was a 6 lb watermelon I grew last year- in Arizona! I had grown corn the year before.

My garden was like a living part of my heart.

The landlady is very upset and sorry for us as well- she knows us. This was a different company then she usually uses. Says they can pay to replace and replant stuff.

It's not the same. Not at all.

I want the bowl my (dead) grandma gave to me. I want the plant that I have had alive since 2006- also my grandmother's plant which again, was my connection to someone who passed. I want my clothesline back- it was the original one from the 1980's at my parents' first home. That cannot be replaced.

Agh. My heart just aches. It seems so gorram unfair that it's like, can't even go a DAY without being fucked over.

This really has not helped at all with me mentally. I am afraid to leave the house now. My overall fear and anxiety has rocketed up again.

Gods. Sucks.

Trust Number 1

So the kitties slept all peaceful like with us during the night, and then promptly woke us up to play this morning. They have 2 food bowls and 4 water containers for the whole house.... and yet every morning they both want to eat from the same one and drink from the same one.

So, lots of hissing and running.

It amuses Wash an' me. As does giving them some new cat toys covered in catnip. (Thanks Auntie Shannon!) Soon my step-bro will be back in town for a holiday and I will wrangle him into helping us shave Leto for the summer. Step-bro has a large cat he shaves as well, so it will be good to have help.

Heard some good family news last night as well; my (step) dad was let go from his last job a bit ago and has been trying to get a new one. Looks like as of next Mon hopefully he will be back at work, doing something that makes him happy. Sadly at the same time as this, my mum has had her work cut back again. I say this not as really that much of my own worry, just to more clearly point out that my family is separate and dealing with their own survival issues.

Wash has finally thought about it and declared that "before he dies" he wants a chance to meet Adam Baldwin, Joss Whedon, Jane Espenson, George Takei and some others. Basically the people geeks drool over at 'Cons.

I want to make this happen for him. Be it at the Phoenix ComicCon or maybe even SDCC. I just don't really know how. I would love input from my Dear Readers if they have some.

There is a reason this has taken on a new urgency for me. In the past 5 weeks 3 other people we know with GBM IV (in their 30's-50's) have had tumors recur. Seems one is going into Hospice, the other two might go through surgery. They are all at 18 months-3 years past initial dx date.

Wash has his next MRI at the end of the month.

No matter how well I might think he is, or others, or himself the truth is that with brain tumors by the time you know just by looking - it's too late. He will look fine until maybe 3 weeks before he dies. Such is the nasty nature of a brain tumor.

This is why it makes me wince and flare with anger when someone says to him he "looks good" or "looks healthy". Sure, he might. But he doesn't have skin cancer here, it is in his brain. No one is going to just look at him and judge him "healthy" or "ill"--- but they do. I suppose that it hurts so much because I see him all the time- his good moments and his bed bound days. I see him at times wake up and get his morning routine done flawlessly, and more often I see him when he cannot remember a word, or thought, or placement. I see him on a walk around the block and I see him when he stays in bed for 18 hours because he is physically still sick and has fatigue issues.

It breaks my heart every day.

Yet, I don't think I could make it through a day without knowing that at some point I will get to lie down next to my love and fall asleep being able to touch and smell him.

I cannot escape the reality of what is to come. Reminders of it flourish around me every day.

I often wonder how society would react or change if suddenly the majority of people realized that each day could be their last. Would you hug someone tighter? Say kinder things? Give more of yourself? Care less about material things and more in the transient world?

All going well I should be giving a friend a driving lesson tonight.

I can hate the cancer, and I do, but I am sincerely trying to learn to be thankful of the journey around it; the love it has exposed me to and the true kindness of other human beings; from the surgeon who worked so hard to remove the tumor and leave my husband's brain as whole as possible to the doctor on his panel who fought to have him get therapy instead of palliative care, to the friend who came and literally fed me and watched me rest after being awake at the hospital for almost 4 days... to the MedicAlert clerk who helped us to get free service, to the manager of a tire shop for repairing my tire fast and free so I could get Wash from the doctor's office, the random strangers who sent us loving Christmas gifts and postcards from all over the world. I have seen the love found in a business fraternity to unite to help try and ease the financial burden of one of their own. For the friends who used to be strangers until we shared stories and gained support.

Despite the viciousness of having to watch him - my husband's self - fade away, I am able to try and really hope for the Best in humanity. It has often let me down, but this journey has also shown me to not tire of trying to always think of Hope.

Maldcontent

Finally got a little money fronted to us so we have internet again and my cell phone should be turned back on tonight as well.

I think next year I need to spend this day in May with some other IF couples.

It just stings like fire in my veins and chest. Not jealousy; I'm trying to work through those feelings. Just the pain of Never-To-Be.

I don't need the men in Congress to tell me- my reproductive choice was made for me. Not by me.

This has been a really hard week.

Honestly- I hate the fact that my husband is 26 and dying. I hate even more that my State and the Representatives in office don't care.

I hate having to choose each month between pills, gas, my mobile(and only) phone.........

I hate that a young man dying of brain cancer who has already been robbed of so much is denied even certain comforts of living as he dies.

I hate saying "No" when he wants a new toy or book and I can't afford it and meds. I hate saying "Maybe" when I mean "No" because he wants to go out and we can't even afford that. Walks are nice, sure, but I can hate that the cancer makes him too tired for walks most days. I can hate that the next Comic-Con (Phx) is coming and he wants to go and I just don't know how to make it happen.

I love him so much... it hurts that I cannot give what he wants or deserves.

If I thought it would work, I would sell my soul for him to be happy the last few weeks/months (maybe a year?) he has.

But what I in fact can do, it is just not enough.

My heart just aches.

text my mobile-cable and internets disconnected for maybe a few days. Meds need to be bought first but i hate Insurance making me choose.

Sunday Bun

For now I will allow comments on this post; if they get unintellectual I will disable it.

I was awake for it last night. Having a later time zone can be advantageous sometimes.

I saw the coverage, heard the President's speech and the pundit heads talking.

I thought of my friends who have fought or are fighting in the past decade from this.

I thought of my friends who lost loved ones in the Towers.

I thought of my friends who lost loved ones in the Wars overseas.

I thought of the schools burned down.

The girls covered in acid from trying to take advantage of "Freedom".

I think of soldiers and civilians who will never walk again, never feel "whole".

I think of the orphans of this- those from "our side" and from "theirs".

I think of the attention diverted from the American Citizens dying at home.

I think of the Depression our country is in.

I think of the billions and trillions spent on War, Death, Fire... and I think about myself and my husband- dying unnoticed in America.

There will be no headline in the paper "Jan Brewer's policies lead to 26 year old's tragic brain cancer death!"

There are no funds for dying over here.

There is no money for our local schools, or our local seniors, homeless, or shelters.

The past 10 years still exist.

The dead remain silent.

The towers are still gone.

The pain still exists.

I have Asperger's.

I do not understand what "Justice" is supposed to mean.

..."When Death and War are the answer, look for a new question."