Monday, January 31, 2011

The Explorers


One of the things we did this weekend.

We went out with my older bro "hiking" and got to the 4th post (almost 1/2 mile) up the mountain. I'm very proud of Wash's endurance and it was great to have some time for us to bond.

I also finally managed to book and go to my (birthday) massage this weekend and I'm sore a bit but it was an hour of glory and I feel SO much better overall. :)

Two doctor appts today and three runs to two different pharmacies.

I've also managed to sicken even Wash with my non-stop X-Files/ The Lone Gunmen marathon. I'm more than halfway done....

My Aspie brain won't let me just "stop" when I'm re-watching a series. Wash has been quite patient and humouring to me with this but he's sick of it I know.

Well, on top of it all it's a Monday so I wonder what new way my state has come up with to fuck with my or Wash's health insurance. I think it's a rather shitty plan- killing the weak, sick, old, infirm, and arrest or harass away the darker skinned people (regardless of citizenship, taxpayers, community givers) until all that's left is the last Great White South.
It's sick.
I honestly wonder why -aside from massive scare tactics- no one has tried to recall (with a serious result) Sho' Joe? Why are there no riots in the streets? No massive show of civil disobedience?

This hurts me not just because this is my state. This hurts me not just because my husband's life is directly affected by this.
This hurts me as a human being to see another human being purposely inflict pain, suffering, and death on yet another human.
I just cannot understand.

Sunday, January 30, 2011

To forgive or forget?

Wash has been doing his best to keep me offline this weekend. Says I get too stressed from all of it and he wants more focus on him.
How can I disagree with that? So, he's limited me (I agreed) and that's sort of why I haven't been posting much.

Not sure how much I have to say right now. We just finished a huge chapter in the end book- he stopped chemo- and now we are both just frozen. What to do?

Pressure from all sides; go take this specific vacation, go there, visit family, do this or that... and I just cannot look into myself and find what it is that I'm looking, searching for.

I've had someone trying to contact me this past week. Someone I had known for 10 or so years. Someone who knew about Wash and I eloping, we were all that close.
Then Wash got sick.
And they wanted to have a wedding without any reminders of death.
So it's been a year, nothing. I think it wasn't just the pain of not being invited to the wedding, or getting even an announcement, it's that months later I wonder if "P" is trying to get back in my life? Why is P trying to talk to me? If P just wanted to return my things, they do have our address.

I had decided the best thing to do for my own mental health was cut these people I once loved so deeply out. It pains me.

I am not the same person I was before Wash got sick. Parts, but not truly. I've had to change with all this, despite how much I detest changing. When he got sick, when my life changed so quickly and turned into a miniature hell... they were gone. Wash's frat brothers stepped up from the start. My gal pals from Jez pulled together while he was in the hospital to make sure I was taken care of and looked after. Strangers who know about us only from what they read online have been more supportive to me that P&J who witnessed our marriage.

Should I, could I, how do I forgive that?

Wash is my best friend. I'm still terrified of what will happen when he goes.

Brain cancer is not contagious. Some people who called themselves our friends seem to think it is.

Wash says life is too short to stay mad or hold grudges. On some things I agree. On others... what kind of a person is it who abandons a dying friend and a super close friend who is also his wife?
Who am I to forgive their actions? Especially when they have not even asked for forgiveness.

Myself? I prefer to bury my pain internally and cut them out.

Saturday, January 29, 2011

Haha Leto Is copying every move that Aelphie does, shes not happy "little brother" is doing that. Cutest thing ever, he even licks the same!
Haha Leto Is copying every move that Aelphie does, shes not happy "little brother" is doing that. Cutest thing ever, he even licks the same!

Wednesday, January 26, 2011

Life- Non Fiction

Taking today "off" the internet to celebrate LIFE. And watch more X-Files with Wash (he's still tired from yesterday). Thank you everyone.
Spent more than half the day traveling and at the hospital yesterday. I ended up driving to/from Phx 3 times yesterday.
Clean MRI.
No new tumors.

His oncologist thinks he should be "stable" for around 8 weeks. She wants us to take a vacation/holiday. Says, "Go out and live for a while now. I still want Wash to nap at least once a day, but go and live. You're young."

We will.


-And to the kind, awesome, kickass, and giving person who sent us(me) The Lone Gunmen and Twin Peaks on DVD?
Dude. You made me squee for about three hours straight. And giggle hysterically.
If I had your address I'd send you a proper thank you. Hope this will do.
Thanks for making a geek's day.


And thank you to every dear reader who has sent money, kindness, prayers, or thoughts. I know that things might change- they will- but for now I am going to focus on the 8 weeks.
I am going to relax and not worry about bills for 8 weeks thanks to you all.

Wash and I are going to think of each other. We're going to do something.

...Just after we spend the day cuddling with each other and our kitties and being thankful.

Monday, January 24, 2011

Now back to the regular scheduled broadcast

Pushing aside for just a bit the enormity of Mr Ebert referring to my blog and words things and life go on.

Wash had a therapy session this morning and it was fairly good timing. We're both stressed as of late, and it's been coming out in harsh ways. I am getting more and more drained and exhausted and scared of everything that is to come- and perhaps sooner without the chemo, and he is finally moving towards accepting that his death will be sometime sooner than 60years. He also was able to finally say out loud today that he has been using me and not appreciating me enough. Or communicating his thanks to me.

Here's where the Aspie part kicks in. He sees the physical movements that he makes towards me, hugs and all, as his form of appreciation. I do not. My brain needs things to be explicit sometimes and all I truly crave is an honest out-loud (un provoked) "Thank you, Tashi. I wouldn't be here without you."

It's true. It's also the hardest thing I have ever done. It's being a wife to him, defending his independence, and at the same time I'm the mom who has to remind him to shower, and eat, and clean up instead of playing all the time.
That's what he has been doing lately, just trying over and over to play. I wonder if that is truly what he wants from the end of his life, memories of building Lego skyscrapers? This is what we discussed. He wrote some notes and I will be trying to make sure he actually does take the time to think about today.

He's been limited, and I feel so guilty for that. It's my failing somehow in my head that he is dying AND poor and young. I can't make him older and I can't cure GBM, no matter my own intelligence. For a year on top he's been fighting chemo and cancer and trying to stay alive and instead of being able to have him do whatever he pleased, we were limited by money. By my lack of funds.
I have been in school or working since I was 16. Wash managed to get two AA degrees under his belt and almost graduated an Architect before he got sick. I don't know what to do with time and funds. I don't know if he yet has decided what he wants to do, to be, to live, before he dies.

We wanted a little slice of our own "normal". He was going to be an Architect, working at a firm somewhere, before starting his own. I was going to keep up as an intern working in Forensic Osteology/ Pathology. He would graduate, so would I. We would move a few times. Find good jobs. Work for a while, pay off student loans from grad school. He would design our home, and I'd take some time off to have a kid, then go back to work and he would be the Stay At Home Dad; taking a year or two off and then working from home.
A life filled with books. And movies. And laughs. And loads of geek references. Our kid would fall at the playground and say "Ow, gorramit!"

I've been fighting for our survival for a year. He's been fighting to live. We both said good-bye to that "normal" future when he went in for brain surgery.

.......... I don't know what to do with our life now.

His first MRI since he stopped chemo is tomorrow. He's terrified. So am I.

When everything else falls through, we always have each other.

Sunday, January 23, 2011

Apricot Marmalade

I am beyond humbled. Good, kind people have been shouting out our story trying to get some attention for us, and it's finally happening.

To anyone who has donated money, prayers, or thoughts, I give the most heartfelt appreciation I can.

You wonderful readers, strangers to me- though perhaps if you have been keeping up with my blog I am no stranger to you- are pulling together to do more good for Wash and myself than our own state did.

I was born in this state. My husband is a legal resident and citizen of Arizona. In my hour of extreme need this state looked at me as a number and said, "Have you thought of moving to Canada? We can do nothing for you."
The state I have paid taxes into since I was 16 and working, the state I attended university in, when asked to help me, advised me to move to a different country.

You gentle readers have pulled together and have shown me that kindness exists in humanity, if not bureaucracy.

I have gone through all of this for my husband. For my love. I wish that you all could meet him, you would understand. Wash is the reason for my own happiness. His kindness, his loving spirit, his endless well of forgiveness. He makes every moment of this worth while, because I can share it with him. He is my heart that keeps me going. He is my comprehension of unconditional love.

Thank you for seeing him as a person. Thank you for seeing more than a "dying guy". Thank you for seeing him more than just a "waste" of health funds, but as a still living, laughing, and loving 26 year old.



Friday, January 21, 2011

Ahem. Fuck you Jan.

Idea, how about we cut off the car allowance for the State officials who voted for/support Light Rail? No more $600/month for car service, the State would pay for a bus pass and Light Rail pass for the year. They get to be more in touch with constituents and the money saved can be sent to AHCCCS!


It's hard enough as it is to try and "live" long enough to die fast enough for Arizona.

If Brewer gets her way Wash will be dead fast. No more medical coverage and I simply cannot afford a 6 figure yearly income to pay for his care.
Or my own. No more medical coverage for me either, and I've now got some pre-existing conditions so I'm fucked too.

Dropping 280,000 people (the POOREST- they still make under 15,000 year) and then cutting off any hope for a transplant (which if Wash wants to live for say, maybe a year longer he might need) from our state ... that will and it has killed people.

Right now, anyone who is healthy and not living in Arizona... be thankful. You have a chance at life.
I just have a harder time convincing people that my husband is a 26 year old person with rights to live a happy life- as long as it may be. They see him only as a number which costs them money.
People are seen as numbers and money- this is a matter of life and death, not numbers on a sheet!

Fucking disgusted with my state and its policies on paying for travel cars over transplants.


Tuesday, January 18, 2011

Oldies

Still alive everyone; just dealing with some new medical issues for Wash and myself.

I am beyond stressed and angry and frustrated these days. Dealing with our insurance and trying to get some-any-benefits right now is just draining me. I love getting to the point where I have to go "Co-pays/non-insured medication or gas and car insurance?"
/rant

Sorry.

Sample of my day; 66 miles driven so far and this;
One of Wash's (new) doctors says, "Where do you want to see yourself in 3 months?"
Wash, "I would just like to be alive in 8 weeks! I just want to be able to talk about my funeral with my family. I want them to know this is serious..."

Fun times my life. Fun times.

I'll post details later, cause there is nothing like being impoverished to make you open up your life in the off-chance of hope it might do some good. Anyone out there who wants to "adopt" a bill for us?
Here's a very quickly done and basic month for us... the math is quite scary, eh?

Income- $841.00
Food Stamp allocation/month $238.00 (This was just lowered as of Jan 2011- thanks budget cuts!)

Expenses
Rent $750
Power/heat $70 (winter average) to $300 (summer)
Cable/internet/entertainment $136.00
Mobile (primary) phone $65 (taxes move this by $2-4 per month)
Groceries $350-400 month (Chemo means Wash has to eat certain foods)
Gas and Car insurance (no maintaining counted) $140-180 month
Wash's and my medical co-pays and non-insurance covered medication $400-500 month
Sundries (hygiene items, clothes, cat food, stamps) $50-100 month

So, I'll do the math for you; we take in just over $1000/month in "benefits" and to die living the most basic life with almost no outside entertainment (we have Netflix. We don't "go out" anywhere that's not free) costs at minimum $2041.00


Per month. That's more than a thousand dollar gap to figure out how to close every month. On top of every other worry about Wash I may have.

It could certainly be worse. That's still a metric shitton of stress on not even 25 year old me.
So.... anyone want to "adopt" a bill to pay for us?
Any Santas out there, kind hearted folk, well off and healthy... Robin Hood?

To not leave this off as a really horrid down post, I am happy that my mum will finally get to meet her first grandson (eldest bro's) in March. She's very excited and so am I. I'm recording some videos and books for him to be able to hear our voices too, as I hope to meet him someday too.
He just turned 2. His cheeks are so gorram edible it's envious. Happy thought of the day, a grandma getting to meet her grandkid for the first time. That's pretty special.


Tuesday, January 11, 2011

Best of a Bad World

Today was not what I expected when I woke.

Wash got through his fasting and ultrasound ok. He was really excited for this evening and our family Taco Tuesday. Planned on watching some Dr Who and maybe getting a game of "Chronology". That was not to be.

All in the timing... as we were driving to my mum's place, my brother passed us on the way to Taco Tuesday dinner... and in the 20 second lead managed to get hit, T-boned, on the way.
I mean, this was literally Wash going "Isn't that your brother?" as the car goes by, we wait to turn and drive one block (20 secs) to see that he was hit and his car might be totaled.

Really not the Taco Tuesday any of us were intending. Gotta say though, my mum stepped up and helped him through the whole thing; from the cops arriving on scene to driving him at 10pm to get a rental car.

I'm sad for him, and I know how hard it's going to be for him to have his routine fucked with.... and yet I'm also very glad it wasn't us.

No one was hurt thankfully.
Insurance will cover everything- or at least it should, and eventually life will get back to normal for him.

I feel bad for him, and at the same time, it could still be worse. It can always be worse.

Tomorrow will be a busy day around the house; cleaning to do, laundry, shopping, cooking, dishes, the tree needs to be taken down and put back away... however, slowly my house is coming into a little bit more order. Cancer fucks with my ability to keep order, but I do strive.

Hoping all of you were accident free today, dear readers.



Monday, January 10, 2011

Simplicity

Hatred is NOT my Arizona.

Saturday, January 8, 2011

Arizona weeps tonight.

I pray when the sun rises it will come up over an Arizona ready for PEACE.



"We all live together, or die together."

Thursday, January 6, 2011

Now What?

No I haven't updated much.

I'm honestly still just processing what I'm doing now, and Wash too. He's still getting the effects of his last round out of his system and dealing with the fallout physically from more than a year of pouring poison into himself.
We went to the docs today and he's going to be getting checked soon to rule out if his spleen has been damaged by the drugs. I hope not, and probably not, but they want to rule it out.
His appetite has been off for a couple weeks now and he's losing weight again. Just when he was getting above 150 with regularity.

I worry. Too much. What else do I do? Can I do?
Worry about money. New drugs, more co-pays, more bills... always. And even off the chemo now I'm still struggling to find the money for all his medicines. But I doubt that is what you want to really read about.

He's stressed. And dealing with depression. And grief. Dying in your 20s is just... hard. Even with the most well intentioned people out there. It's still hard. Living every day, finding a reason to is hard. I have to stand in for that for him most days. Sometimes just the kitten will do. Some days... I'm not sure. I'm not sure what he thinks about all the time anymore. It hurts me that I cannot fulfill, cannot give him what he most desires. It hurts me too that I have to stand back and watch it all. The good, the bad, the scary shit your pants moments, I see them. And it's unfair, but it's the only thing I can really leave for him. I can honour his request to uphold his dignity- unless it's Wash himself laughing.
He doesn't want people- his friends or family- to see him suffering, or in a bad condition. He wants time with them while he still remembers them and himself. It's hard, but I intend to hold up for his wishes.
For the next month I'd guess it's just a game of waiting and recovering. See how he does off the chemo. See what improves or doesn't. See what grows back or doesn't. Then, we move on.

I'm just not sure to what. I'm hitting this 60 years too soon. How do you spend the time left? A couple years if he is oh so very lucky. Maybe a few good months or a year. No income. I don't know if he has a "2nd" plan, what to do?
Always, the verb, Doing. Not Being.

I am scared to just let myself Be.

Words of Wisdom, would you Whisper to me?

Tuesday, January 4, 2011

Can't Stop the Signal

So, a few years ago (before we met) Wash went to Comic-con.
He then ended up in an auction for some Serenity/Firefly props and such. He had his sights set on a movie theatre poster for Serenity signed by the whole (most) cast.
Final auction comes down and it's my Wash going against Harlon Ellison for the poster.
Wash won it.
There's a larger story there, but it's his to tell, and I don't know all the details.

This thing is like... his pride. And he's been crushed because it's so big and needed a custom frame. For the years since he won it it has been sitting in a tube safely tucked in the back of my closet. I had looked and looked and just could not find a frame that wasn't a custom several hundred dollar thing. So, it became one of my "At some point I want to do this for him" project.

Well, today when I was out I spotted a HUGE frame that was "damaged" and being sold for under $10. The 'damage' was a bit of paint that flaked off the top of the frame. Perfect size. I grabbed that frame.

His poster is now hanging in the bedroom. Summer Glau is staring down at us and it's only missing Alan Tudyk's sig. My Wash is beaming.
He keeps staring at it. It makes me laugh to see him this happy. Firefly and Dr Who are his biggest fandoms, aside from his Steampunk stuff.

It might seem like a small thing, but for Wash, he thinks of himself as a Browncoat. Fighting the fight he/they can't win, but know it has to be fought anyway. This is a way to keep him going, keep his ship flying. This poster even has the tag "The Future is Worth Fighting For". I love it. I love how much he loves and values it. I love how it motivates him to live.
He wears a Browncoat wristband and has since he came out of the hospital. He likes to imagine himself fighting against everything wrong, making a difference. I like to agree. He's my own Captain Tightpants. His love keeps me going too.


Fuck Cancer.
Nothing in the 'verse can stop us.


Monday, January 3, 2011

Troubles and Tribbles

I feel physically sick.

For a month the new neighbours have been playing an amped guitar/drums/vocals at odd hours loudly.
We live in townhomes with shared walls. Sounds travels. Their unit specifically was just renovated with all tile; so sound is even louder in that particular unit. Really not the best place to be "quiet" nor the best place for "band practice".

For a fucking month I have been getting courage and going over and over to ask them to turn it down after 10pm or when it knocks the paintings off my wall with loudness.

They started in again tonight at 10 ish. I went over to be nice, to not be a bitch, and asked them again to turn it down.
"We gotta play sometime!"
"My husband has cancer, it's after 10 on a week night, please just keep it down."
"That's not my issue"
Then they closed the door on me and proceeded to play extra loud for about 30 mins.

I'm going to have to talk to our landlord tomorrow. I can't live like this. I don't pay to hear my neighbours' shitty attempt to play the same 2 chords for an hour. It's stressing me out way more than I thought. I'm fairly sound sensitive, but these guys are just being dicks on top.

Do I say anything else to them? What do I say to the landlord?- "Hey, just want you to know that the police are going to be here every day that my neighbour plays his music loudly. I've asked him for a month to keep it down and now I'm just going to call the cops. " Is that incentive for the landlords to do anything?

Arggh. So stressed. >:(

Never Forget

It is 38F here. (Not a contest)
Why, yes, I snuck out of bed to go throw our pj's into the dryer.

Why yes, wearing super warm clothes IS a great way to wake up!

Also, today marks the first day where Wash would be taking chemo- but he's stopped.

I'm kinda still in shock on the whole thing I guess. It's been 14 months of keeping him alive and happy, and now I have to consciously just work on the "happy" part, come what will.

I am thankful to have him. I am lucky.
But I can still hate cancer.

Saturday, January 1, 2011