Thus Begins

I love my home. I (for the most part) love my city. I love being this close to my downtown, being able to walk to our main street (Mill Avenue) and the Lake.

Except for about 10 days a year. 4th of July, Christmas Parade, The first week of a new semester, and New Year's Eve.

There is an annual "Block Party" which attracts 40-100,000 people per year.

There is free music.

Fireworks!

I frakking hate it.

It's 10am right now. They've started playing music. It's over 4 blocks away and the bass is loud enough I can frakking FEEL it. It's only going to get louder over the next 14 frakking hours.

People park illegally. We caught a couple last year who parked on our LAWN in a mini-van and were having sex! We have had people drive fast on the blind curve at the end of our street and hit /totaled 3 cars. Beer cans are left EVERYWHERE. Glass is left in the streets to shred tires. The city does not clean up my street nor do they even cone it off to allow for just resident parking. I've brought it up before in City Council meetings as the neighbourhood one block south of us is allowed for resident parking only and they do not have the same problems we do.

I'm feeling awful from my shots.

The bass is driving me mad. I want to cry. Even sitting in my closet does not help.

Not a fun day to be my flavour of Aspergian.

Eventually I will find a place or a friend and wisely spend my New Years at that location. For now, I'm just going to be super cranky all day and probably be popping all day (my 'tic' is a verbal sound close to a "pop" I make. I'm usually unaware of it, Wash notes it though.)

Dear Readers, and New Readers,

Just please be safe out there today/tonight. Have plenty of fun, but be safe. Have a designated driver or call for a FREE ride; link below is for all 50 states with programs.

I have worked in a morgue before. PLEASE have fun, but not at the cost of a life.

http://duijusticelink.aaa.com/for-the-public/aaas-role/public-education/sober-ride

I will write to you all in a New Year.

Cheers!

Thank you, ThinkGeek.com for giving us Christmas

To the geeks who work at ThinkGeek.com and the geeks who shop there,

Thank you. My name is Tashi, and I'm a geek. I'm also married to one, I call him Wash. When we met, it was our mutual love of the geeky and nerdy that led us to know we needed to be together. When we moved in together we laughed at the duplicates and triplicate copies of Firefly, LotR (books and films), Whedon series, Dr. Who, and so many Science-Fiction authors. As our love grew so too did our collections of geek memorabilia.

Just a few months into our marriage the world changed and my husband suffered a series of seizures caused by an apple sized tumor pressing on his brain. He was only 25 when he underwent two brain surgeries to remove the tumor. A month later he started on a year of chemotherapy and radiation. Most patients with his cancer, Glioblastoma Multiforme, live only 9-15 months after surgery with treatment. That was 2 years ago.

My husband is now 27. I became his full time caregiver when I was just 23. To say it has been tough would be quite the understatement. We have battled insurance denials and cancellations along with the horrid side effects of brain cancer and chemotherapy. Throughout it all though, my husband has retained his sense of humor and more importantly to him, his sense of being a Browncoat. He knows he is in a fight he will not win- this cancer kills 99% of patients, most in under 3 years. If we are lucky, he might live another 1-3. He knows the hard facts, and yet every day he wakes up and fights to live. He wakes up, and some days he can run. Some days he can walk. Some days he has to crawl, and the really bad days he knows he has friends to

carry him.

This past fall has been hard on him. He has been having more physical issues from the brain damage. There have been a lot of bad days. We've had time to catch up on some of his favorite series (Fringe, Warehouse 13, Eureka, BSG, Big Bang Theory, Dr. Who, Dollhouse, Castle and more) since he spends so much time resting in bed. One of the hardest side effects we have to deal with is the fatigue; as such a young man he is not used to being bed bound, so anything that keeps his brain working in good humor without being too physically taxing is priceless to us.

We are geeks. We, of course, read the ThinkGeek catalog. We like to spend time on the webpage looking at the cool toys and gadgets. It is something that brings him such joy, just to see what is out there. We are always short on money, because he cannot work, I am an unpaid caregiver, and his medical costs are astronomical, but whenever we can, we try to treat each other to ThinkGeek stuff.

About a week ago I was contacted by one of your PR employees. He informed me that your company knew of us and our hardships and wanted to help give us some cheer for the holidays. The cheer came yesterday, in the form of a number of lovely gifts.

For some people, such gifts would warrant a thank you, and that would be enough. For us, though, a simple thank you does not cover it. Not only were we able to now "present" gifts to each other, there was plenty to share with some of our family, friends, and even a "cute" Neuron plushie that we will be giving to Wash's Neuro-Oncologist. The material things that we received from ThinkGeek were wonderful. Far more than the actual items, though, is something that is truly priceless. Wash does not have many Christmases left, if any, and to be able to give and receive fun, quirky presents, to be able to spend Christmas without the cloud of brain cancer hovering over us, is something that we could not have expected and cannot possibly express sufficient gratitude for.

I am enclosing some photographs of us enjoying the bounty and our kitties enjoying their new "Cats Attack!" scratching post. We have so much appreciation for your company. This action epitomizes for me what our geek culture stands for; unity and community. My husband has a rare cancer for his age, but he does not feel "alone". He is part of something so much bigger and you have helped to show that. You see your customers as people first, and that is a rare commodity these days.

For making my husband and myself so happy, thank you. Not only do you create wonderful and unique products, you are a company with a generous, giving heart..

With so much appreciation from fellow Geeks,

Tashi and Kevin "Wash" Pratt-King

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.

Happy Christmas

Celebrating Christmas, Hanukkah, Sunday, Giftmas, Saternalia......

May today bring you Peace and Joy.

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.

Arigato Gozaimashta

http://www.youtube.com/watch?v=3bUDPi5lnbA&feature=colike

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?

Uphill

Battling Insurance today.

"So you're poor and sick?"

"Yes."

"Prove it."

"Fine, here." (papers)

"Ok, but WHY are you poor?"

.... really?

My husband is dying of BRAIN cancer. He will never work again. The State of Arizona does not pay *me* to be a full time caregiver, that's all volunteer. No one "pays" me. It costs money to live and a fuck load more money to not die.

It's a stressful day today. I'm hoping things will get better.

Don't have anything but Hope today.

Debate answers

We were up until 3am last night. I cried myself to sleep for the first time in a long time.

The past 24 hours have been, in a simple word, hard.

Wash took some time to really reflect on his life lately and what truly has happened in the last two years.

He has been living in a play world I have helped to create. It's partly my fault for just trying to give him the "best" and "easiest" life; though perhaps not the most honest.

We have issues, and for the most part, I just eat the pain and leave it; he's the one dying, right?

It's not fair. It's not fair to his end of life or my own. Neither one of us is happy.

We talked. For hours. Had a real nice "come to jeebus" type of conversation. Wash was able to really express himself and his fears to me for the first real time in two years. He's scared. He's scared of the pain and dying and scared about a tumor that could leave him paralyzed. He's scared about how much of his life he has already lost and what he cannot even remember of the last two years.

He tends to deflect ; that is not the tumor, just his personality. I hope he did hear me when I had the chance to explain to him just how painful his deflections onto me are.

A big part of the stress comes from his just lack of respect.

He had a chance to really reflect and this is what he came up with;

*He does not remember how sick he was

*He does not remember each day how sick he might be

*He recalls he has memory issues, but not how bad

*He did not want to believe in his brain cancer. He did not like thinking it was true he has a terminal cancer

*If he hold onto those thoughts then he does not have to confront his own mortality

*If he does not have to confront his mortality, then he's not really dying/sick

*If he's not really sick, he does not have to listen to Tashi or his doctors

*If he doesn't have to listen to Tashi or his doctors, he does not have to respect them either

*If he doesn't respect Tashi then he must be ok and not really sick or dying

(His logic progression)

We had a good chance to really explore these thoughts and how harmful to him and me they really were. I did contact Hospice yesterday for some help, along with his social worker.

It's so hard. It's hard to love someone you have to watch die. It's hard to fight for what you know and believe to be their best interest when they (sometimes) cannot even see how much they need. I want our life to be happier, even if on a smaller scale, before he dies. I want a chance to enjoy my husband, not my charge. I want to be a wife, not a caregiver.

I had at most 6 weeks when we got married before the tumor got to him. Not 6 years, or 60. I had 6 weeks. 6 weeks of love then my world turned to a hell for months before his tumor caused a visible and almost deadly grand mal.

Respect is so important to really any relationship, but for our marriage it is essential. I know what brain tumors can do, I know how they can change personalities and bring forth anger. I know that and I understand. However, Wash still insists and I do believe that he has to a degree, control. He makes choices on his own. He decides some days to be mean and disrespectful because he can, because he has no other way to act out, and he feels - or felt, that he HAD to act out. I get upset and hurt emotionally when he does those things out of purposeful disrespect to me. Some times he fucks up. Some times I do. I don't get mad or upset at that, life and crap happens.

There have been a few occasions though over the last few years where he has been fully aware of his decisions and the effects they would have on me and us, and he chose to do the thing that hurt me over being honest.

We're being sued now, and honestly it is both our faults. I did not do my diligence and check to see just what he had done when his tumor was crazy. I accepted his word on some things, accepted that he said "I can and will and have taken care of the issue."

He did not.

And I did not check up on his work.

And now I have a suit in court to deal with.

Wash does not want to go into a Hospice home. He does not want to move out of state and he does not want his parents or a stranger caring/nursing for him. He wants to stay married to me and die in this house that we have made into our home.

I am still willing to fight to make this happen for him.

Death is fucking scary. Dying at 27 years old, even more so. I cannot put myself in that place, much as I try. I cannot take his cancer away, or put it upon myself.

The most right now I can do is not be silent. Is not hide his end of life behind a window of "He's fine". It is to be respectful of his wishes, while making sure to have respect for myself. It is not to lie to him, even if it saves the pain. If we're lucky to even get one more whole year while fighting this cancer, I don't want more time between us wasted on lies.

I can be honest about what it is like to face death. What is is like to watch the brain turn on itself, the painful parts, the wonderful moments worth holding onto, and the nobility of fighting when there is no real chance to survive.

I don't want my love to die. I don't want him to have cancer, or to suffer. It's not about what I want, though, and life will sometimes make you watch the thing you want so very much to avoid.

Right now though, it's not about me. It's about being honest enough to help my husband want to live - as long as he can have.

That's where we ended up at today. The house is still needing cleaning. I have errands to run. I have papers left to write and file for insurance. Sometimes mental issues have to take precedence.

Some days are burdens, some days are gifts. Such is life for everyone. Knowing death is so close though, daily it changes my perspectives.

Not worth it

I so do hate the days that take away my loving husband and leave me with a angry, selfish man who does not even see his wife as a human being.

I know it is 90% cancer/tumor/medicine shit, and maybe 10% his old personality, but I hate it all the same.

I get so sad and frustrated trying to anticipate what will set off his ADD like symptoms; he literally can not multi-task. I as a person, as a wife, even as a caregiver always lose out. I get pushed back to second place or further and forgotten.

I lament and I mourn I had perhaps 4 maybe 6 weeks as a newlywed with my husband before the tumor took over. Now I've had two years longer than 98% of his type of brain cancer patients have had with their spouses; I think of that every day.

I don't feel respected, and I don't feel loved. Rationally, I am aware, it is his brain.

But I'm not an android. Even with Asperger's I feel. I hurt.

I wish there was some kind of "happy" we could both enjoy. There does not seem to be much of it lately.

If this is his last Christmas (I can always hope it is not, but the numbers are killjoys), I want it to be a good one, a happy one. I want him to have things to make him smile, to feel joy for. Something to encourage him to just keep living.

At the same time, for me, it hurts so much to know this might be his last Christmas, he can and will treat me however, and I have to just deal with it somehow.

I wonder if it's too much to ask for both of us to be happy.