Mixed bag of cats

Stuck inside my head these last few days. Wash has been doing a very good job to keep me away from the news and 'net because I've lost my ability to compartmentalize as of late. There is so much death and pain around that I am just doing my best to stay in a happy fantasy for my own mental health.

This of course, cannot be done long term.

I manage to get the things done that need it, but little else as of late. It's just so trying. Shit you not in seven days I have been to the pharmacy 5 times (and still have one more to go!) and driving all around town... things slip and fall.

I went to campus the other day to bring some lunch to a close friend (grad school, ah the joys) who needed to be fed and it felt so... odd. It's only been a few years since I was in school but my world feels so different now. I don't "feel" like any of my peers.

While we were down there Wash ran into an old classmate who has been aware of what's going on through Wash's facebook. Gave him a hug and said, "Hey man, you'll beat this!"

I hate moments like that. It's not the hope itself, that we have overflowing, but the absolute optimism without the knowledge that no one has "beaten" this. A small handful of people have lived more than 5 years. It will kill him, or lead to a medical complication that does. What hurts is how he needs to be held and loved afterwards because of course there's a part of him that wants to believe this isn't happening. That it will all be ok, the Hollywood ending will happen; smiles and curtain down.

But that's not how it will happen. Doctors, nurses, oncologists, Hospice workers have all made it clear to me (and to some degree Wash) what is to come when the downhill happens.

Right now, he's "stable". Right now he has beaten the statistics and odds. I am petrified at the thought of "how much time" is left. I try to not think about it, but for Wash- he doesn't have that mental pillow anymore. He can't really 'brace' himself when someone is making a "goodwill" gesture that actually hurts.

He wants to travel. He wants to be a father. He wants to live and remember.

I just don't know how to give him what he wants. I don't know how to keep fighting a system that wants us both dead or removed as a "burden". Being the Tashi is hard. Living for two adults is hard. It's an exhausting, unpaid work that makes me long for the tiniest of respite.

What's even "better"? As a married couple last year I brought in just over 3k and he got about 9k in Disability. Around $13,000.00 to live on for a year, for a terminally ill cancer patient and me with chronic medical issues and a state that never paid me unemployment or FMLA leave.

The thing with that which makes it even more of an issue to me- no one in our family asked how I was making ends meet.

I'm glad we are both trying to get things more settled and amenable with our respective families, but there is just such a huge gap in what they see and hear (or want to) and the reality of our every day-to-day lives.

Also, to those of you who are sending us wonderful gifts or cards, please leave a return address (if you feel comfortable). I was raised to send a proper note of appreciation and it's a small thing, but something I enjoy. Though we both enjoy the post/mail, Wash does not really hand-write anymore, so the writing is mine, but the sentiment is from us both.

I shall leave you dear reader then with something to make you smile; Wash asked me off-handed what I wanted for Valentine's Day this year.

"Oh you know me. Fuck flowers. I want time with you."

"Really? You've got that. Movie, dinner, foot rub...?"

"Ok, got it. Want to get me something fantastic for V-Day? Something that will get me down on my knees in thanks?"

"Of course, what?"

"I Want. A. Working. Dishwasher."

Seriously. I will trade away a week a Disney-themed park for a new, working, dishwasher.

Ladies, thoughts?

Brand New Day

The following blog post was written by Wash, to be published;

After nealy stopping viewing any polarizing media, I'd withdrawn from the world. I was beginning to dispair a little over the state of my species and being denied the chance to make whatever positive change I could. I'm no egoist, thinking I'm able to severely adjust the course of events. Maybe nudge things a certain way, but not shift it. I dislike the vitriol that often fills the internet and media. Polarization in the Government paralyses it into impotence. To watch my fate riding on fillibusters and joint-bills is heartrending to say the least. Is it selfish? Certainly so. I find my care cut part by part, and I hope to keep my health, tenuous as it is, to avoid relying on unreliable healthcare.

So those who read and felt moved to read Tashi's blog, I thank you for the time you spent with us through our story, our continuing mission, to seek out new life and new civ- that's not right. You read it. And I hope it touched you somewhere, to see what it really means when "the system is broken" is brought up in the endless Healthcare debate. My gratitude for taking time out of your life to experience ours.

For those of you who have felt so moved as to donate or give, we're gracious beyond words. It really makes me believe that there's more good on the internet and in the US than I had believed. If the world was filled with more people like you, it would all be a better place where the bueraucratic disasters could be kept to a minimum.

Thank you all for even taking time out to spending any attention on us.

I cannot go through all of these trials without my dear Tashi. Honestly, there are thousands of little things she's done I can't either remember, or don't see, and I try to thank her as much as I can. I read and I see some things, but there isn't enough paper for me to list all she's done. She barely illustrated the haziest fraction of everything she goes through day after day in her blog. She's the best better half I could ask for and then some. So thank you for helping her out in what ways you have, so she can help me. Thank you!

This morning I watched my wife beaming as we bought books for the first time in 9 months. We're finally feeling comfortable enough to walk into a store and not worry about whether this would be the only time we get to do something beyond survival mode this year. We've come closer to the feeling of newlyweds. One of the best parts every day is waking up next to my wife. All this happens because of what all of you, collectively, have done.

I'm glad to have that comfort, too, and it makes me fret less when we're planning for the future. We both are looking forward to the Wild West SteamCon, and taking weekends away with friends. The big things are nice, but I like the little ones, too.

What I've learned:

Enjoy life. Relish those tiny moments that happen, where you feel warm and comfortable. You can never have too many moments. It's always shorter than you thought it'd be.

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.

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.

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!

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.

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.

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.

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.