Confessions pt 2

Some nights the reason I can't sleep is that I worry he won't be alive when I wake up.

Some nights the reason I can't sleep is that I worry what will happen if I have to move him and he cannot remember where he is.

Some days I worry about how to cover all the medical costs.

Some days I worry about our (lack of) future.

Some days I just want to be by myself and in a quiet spot, but I am terrified of being alone.

Some days I worry this is not all a dream.

Every day I worry it will be the day he forgets who I am and our love.

Paypal help

So we got a donation Paypal account set up with our friend; for legal reasons we cannot have one of our own. Wash will lose his medical insurance again if we do.

So, for anyone who wishes to help us monitarily I will post the link to Paypal below. If there are any issues, please leave me a comment, I do check them. If you prefer to donate a different way you can contact me on my email

hopeforwash (at) gmail

The Paypal is here

https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=KXARP779DUV4J

As I have requested before if you'd like to help us out and you are in a financial place to do so, we would be so grateful. I cannot meet our needs on a single SS payment and monthly food stamps. That will never cover even a portion of his medical bills. We also could use gas cards if you do not feel comfortable giving money; that is always needed to transport Wash to his hospital and doctor appointments.

He got a nice gift today though from therapy- he got to go Build A Bear (part of a coping therapy). He named the little guy Hoban and seems quite happy. I'm thankful.

The Doctor

Flat out Aspie moment for me today;

We are at Wash's therapy session today and they are talking about how to help him remember his emotions better and they mentioned- "emotions that are strong can help set memory..."

And of course, with PTSD I am aware of this as a concept. I understand it exists.
But I don't understand. My memory does NOT correlate to my emotional standing. Emotions and memories are two very very very distinct things for me. They can be compatible, but for me when I recall things I don't remember feelings with it- not unless I really try. And sometimes I just fake it.

Just one of those days where I feel really different from just about everyone else.

Every night I sit alone and I cry

So, wanted to share this awesome little bit from last night.

So, around 10pm ish Wash and I head out (after the storm, wind, and sun have all gone) to the main street of our city (Mill Avenue) to have a little walk and such.
He always whines and complains about moving until I get him outside then it's awesome. Men.

Anyway, we decided to stop in one of the head shops we like to frequent as we like the staff.
Wash and I walk in, and there's no one there but us and the two keepers.
One of whom we've met maybe once before.
He notices us and runs! forwards and grabs Wash in a big hug.
"Hey man! It's GREAT to see you! How are you feeling? Oh, man, I saw you guys in the article a few weeks ago and I was like, hey! I know them! It's so good to see you!"
So he and Wash chatted for a bit, then we left and got ice cream for the walk home.

Almost Famous?
He was recognized as well from the article at our local Farmer's Market the other day too.
I think it makes him happy.

Project 1

http://www.youtube.com/watch?v=6FOY154jIXk

This is what I spent most of my afternoon doing/working on.

Questions and Answers

Paypal should be up sometime tomorrow. With luck.

Sadly got the denial letter from AHCCCS for Wash's mental/physical rehab.

Because he fits medical criteria, but he's over 21 so they recommend a supplemental insurance cover it. Frak "Quality of Life" and all that.

I'm not getting angry about this until tomorrow. Again, I love how they always send the denials on a Thurs/Fri. Never got one earlier in the week.

Today was a good day, I will not hold wrath today.

So.

Wash and I had a real good morning, got out in the outdoors, did some errands together, sang a bit. Was nice. Also got a harness for the kitten so we can start to outside/service train him. He seems to be taking to it ok.

Wash was laughing and smiling today. That counts as a win for me. He's also making me dinner tonight- woowoo. I feel special. :)

And since it takes a long time I'm very much anticipating it.

Also for anyone who wants to know what aside from Paypal to do for me?

*Are you local in AZ? Register and VOTE. That is the only way we will change the policy that is killing Wash

*Are you local to Phx/Tempe? Message me if you want to personally help with some day to day stuff

*Are you a social networker? Pass our story around to as many many many people as you can. The more who know the more who will want change. Imagine if it was you, and really it could always happen we just never want to think about the larger odds

*There is a post called "Our story links" you can find the info there.

*Call your local state reps and find out what their policy is on healthcare for the "in betweens". Tell them our story. Ask what they would do to prevent that from happening to their constituents. And if you don't like what you hear, VOTE.

*Gas cards. Aside from the medical costs gas is a huge drain and issue. Wash's hospital is in another city, granted neighbouring, but still it's about 30 ish miles round trip for one trip. He's there multiple times a week/month. And his other doctor appointments around town. If you'd consider this again, message me and I will let you know more details

*Postcards. Travel is really not an option for Wash anymore. Even if we could afford it he and I both know he has maybe one or two big trips- out of state- left in him. So postcards from anywhere would be wonderful to get and cheer him up.

Ok, I'm gonna go into the kitchen and try and sneak a snack.

A new hobby

The past few days, let me think and remember. Working to set up a Paypal and try to learn how to ask for and accept help from people. I have Aspergers, it's hard for me, a lot of times honestly.

We have a really awesome friend and Wash's frat bro who it looks like will be spending a few hours with us a couple times a week in between classes. Gives me a chance to do what I have to do, and Wash loves his friends. I'm happy for this.

And for the gifts and cards and postcards that occasional show up in my mailbox, not just overdue bills.

I had a good time working out my knee in physical therapy this week so far, as much as it hurts I know it's for the better. I just want to push through this and get better - even a little- every week.

I also finished "Under the Dome" on Sun. Took me 4 days, but that was counting the two and a half that Wash spent complaining about me reading. I brought this up in therapy, his life of double standards. He begs and bugs me for months to read again and when I find a good book and a good story he spends half the time trying to distract me and take me out. Not really fair love. I didn't give on this. He was fine and had his kitten, I wanted to and did read my book and finish. And I did hate and cry at some parts, some parts far too close to what my own life was and is like. The sudden growing pain that isn't spoken of and the sudden turn from a loving soul to a cruel abuser. I try to forget those days, but there are times I cannot. There are marks still left. And it felt like I was in Wash's head at that point; hearing Arnie speak and hit me.

Apologies dear reader if I have not explained this lately, Wash refers to his tumor/ personality with it as "Arnie", not himself.

It was stressing.

But the story was more important and I finished.

It makes me wonder though, about our own story. Our own ending. When and what that will be. How close, how far? Is it weeks- I think no. Is it months- I worry yes. Is it years- I never let myself be completely set on that. I know this disease too well, for every 5 year survivour there are 98.~ % that will not survive.

Which brings me around to the issues of today.

A little fight - tiff- between him and his parents. He told them the other day he wanted to try and find an Adult Make A Wish type program or sponsor who will give us a vacation at Disneyworld over my birthday. He's never been and neither have I. He wants time off to relax and live while he can, and so do I.

He wants it on my birthday. He wants me to have a treat, something special, something good for me to hold onto and remember.

And this I think is only part of the bigger issue. I'm not certain why his parents would object to a vacation. A we-are-only-going-if-it's-paid-for holiday. Because to see him getting that would perhaps... solidify? to them that he is in fact, terminal.

I have my theories why they have not so far, despite the articles, doctors, hospitalizations...

They are not the ones taking care of him. I am. They don't see him at his worst. I do. They don't see his pain. I do. They don't see the medical files, the statistics, the grim looks from questions of years- plural. I do.

I see him sick. I see him cry. I see him hurt, and begging for relief. I see his hard times and I hold him until he can move past it, or until I have to carry him past it.

And that's my marriage. That's my devotion, my love, my right. My life is to give him the best life that he wants right now.

His parents don't see that, I don't think.

For him to do this, go away on a "last hurrah" (which it might be) will sink it in that he is dying.

Now, we've slowed it down a lot, but he is still going a lot faster than say I or perhaps you, dear reader.

So many issues.

Aside from that as of next month we will have been infertile for a year.

I'm crying a bit, because it is just hard to write, to speak of, to think about.

I've had so much taken from me, so much lost.

And I still have 62 days before I'm even 24.

Where do we go from here?

Election time is coming

Fight the good fight.

Come tomorrow when I vote in AZ I encourage anyone who comes across a blank selection on the ballot to put my name in.

I would swear to fight for an Equal state and put human interests first- always.

Vote Tashi 2010

Watching

It's the little things; the moments now. Nothing else will carry over, only really have memories.

We had a walk today, holding hands.

I had kitten kisses from both cats in our home.

I kept my husband smiling and laughing today.

We had a good day.

It's the little things, but I agree with Wash. At the end of the day I end up in his arms, or mine around him. We're together and I get to tell him every night I love him as the last thing I say.

To me, that's golden.

They all

I've been having my own issues lately dealing with the happiness of others.

I can share in their happiness. I can take comfort in their joys and be proud of all they do and how far they go and grow.

And yet, every time I hear of another friend getting married I feel like my heart is just ripped out. I don't get a "happy ending". My vows will come to an end much sooner than their own. When my friends tell me they are expecting, and I see daily new photographs of a foetus, or hear progress of a child, I feel like my own stomach was kicked. There is something else I want with all I have, that I will never reach.

And, honestly, where I have grown up, my family, my history... I wanted kids. We wanted kids.

Then we would settle for a child. Did not even have to be our own biologically.

Impossible.

I don't know how to deal. I don't know how to make peace with the fact that I as a human pretty much have no value on Earth. I cannot finish my schooling and I don't ever know if I will. My wonderful and large and very very very curious brain is set to waste. And I fail in the most basic and complete sense as a woman. I cannot have his child. We cannot be parents. I cannot pass along any biological traits I may love of myself or of him.

I feel like I should not even have my uterus anymore, it causes me nothing but literal pain every month with a painful reminder of what I will never have and that I have failed as a woman.

It's all lost.

I don't know how to not feel pain when I see family, friends going out on vacations, buying thousands of dollars worth of disposable material goods...

when I cannot even figure out how to find a few hundred dollars each month so we can have electricity and internet. And yes, both are essential, and if you do not think so imagine living in 120F weather with no way to sweat/regulate your body heat. And you are dying, trapped inside a place with no AC in the heat and you have no means to entertain yourself.

I will say again, men condemned on Death Row do not even live like that. But the Federal, State, Local Government, friends, and family will all watch this happen to myself and Wash and not help or intervene.

The only thing he "didn't do right" was getting cancer in America at a young age. But not young enough to qualify for help. And not old enough to either.

I hate all this negativity and unfairness. I don't understand it, I don't forgive it, and I honestly do not know what to do to change it.

I have begged family and friends. He's talked to his frat alumni. We've had a small story on the TV news, we've had a feature story in a weekly that I have tried to spread around.

I feel so gorram useless. Every good thing that happens to others I know seems to underline all the bad shit that keeps plopping on us.

People say they are "sorry". So "sorry" for my situation. So "sorry" about Wash. So "sorry" this happened to me at my age. A litany of 'sorry'. I'm sick of it, honestly.

Sorry does not solve or accomplish anything.

Sorry does not help me, only points out you have not been where I live.

I need publicity. I need food. I need my electricity bill paid, my cable bill paid, my car insurance- or I can't drive Wash 14 miles each way to his hospital. I need money for rent and my phone bill.

That's what my life is, figuring out the very very basics- and a measure of comfort for at least Wash, cause, you know, he's dying- and trying to cover when the stuff slips between.

Like when I have to make an emergency run to the drugstore at 4:17 am for $40 worth of OTC meds for Wash, or gas for the driving I have to do going to all the doctor visits.

I need someone who can and is willing to help us to stand up. Someone to notice that this is just beyond unfair and is cruel to watch a government and community turn their back on a dying man.

He's not just a lost cause, he is my husband. He is the man that makes me laugh and smile. He's the man who has designed elementary schools to help children learn in a friendly environment. He's the great friend you can always count on. He's a wonderful, learned, and caring Fraternity member.

And I wish, I wish so hard for someone to step in and help make his last weeks/months/year worthwhile as a human. There will not be a cure. I am realistic. I have medical knowledge.

But I can still hope that there is someone out there who has money and cares for a fellow human to see him, to see us, and step up.

Maybe I fail at being human, helping the living not just the bones, but he doesn't. He is the best example of what kindness and caring and patience and courage is.

And it hurts me so much that all the character is taken away from him by this disease. People see Cancer, not my husband. They see a Patient, a Number, not my love.

I just don't know how to deal.

Liars

So when I first set out to start writing this, I made a promise to myself and any readers, I would not lie and I would not hide the truth. I am asked to do that so often, here was to be "my" space.

And I failed. When things got tough, I stopped. I didn't write, I wasn't honest about the good times.

Things are held together and breaking apart.

It's monumentally hard. I set out to do this, I did take on his full care. It's exhausting. Frankly, just so tiring.

To hear the same things over and over, to live the exact same day over and over for him. Things change and he backslides. I deal. Everyone wants money. The bills never stop. But I have no income, he can't work literally, and I cannot either. I can't leave him alone.

It worries me. Constantly.

I watched the bees in my garden this morning. Moving the pollen around, making sure my crops will come in nicely this fall. I'm happy.

But the thought that occurred to me whilst I was out there was this, everything I have tried to change in my life, all the running, the studying, the learning, the observing...

It's all lead me right back around in one big circle.

I think I am crying inside constantly. Never ceasing waves of tears. Railing against the unfairness of life. Which, is really what life is. It's not fair and it changes. That's all that ever stays the same.

I can hope I can hold onto the love that brought me here. I can take my time in the garden to think, to remember. But all the while, my reality is back a hundred steps from me, lying in pain in bed trying to stay alive while he is poisoned from his brain out.

He is my reality. He was my reason for life, liberty, and everything.

I miss that man. Some days I miss him so much. I miss my best friend. I miss the guy I could cuddled up with until 2am watching Sci-Fi movies. I miss the plans for our future.

See, I'm not in the "lucky" group that has a child. I don't have any part of him to go on. I don't have a part of me to go on after. The familial support we do have comes from extended members and even then, there is no real help or reliability. It's just all on me. And frankly, no Government wants to help.

I think the thing I hate seeing more than him dying is watching him die in utter poverty. As if getting cancer at 25 wasn't enough. As if getting brain cancer at 25 was not enough. As if getting a very quick and terminal brain cancer at 25 was not enough pain... die in utter poverty too.

Reader.... would you want this for yourself? Honestly?

Would you want to die wondering if it might happen before the next bill is due and you then die homeless too?

I can sell my body. I can sell the extra 13" tv we have. I can sell the two bicycles in our backyard.

I have nothing else. He owns my heart and my time, and my loyalty.

There are glorious moments of happiness, true. And those are what keeps me going. For all the life of pain I lead by watching him fight this, by watching the cancer eat up the person I love more than myself... there are moments of pure beauty and utter human compassion.

There are days when I wonder, when I ponder what is to happen to me next, after this ends. See, I'm almost in my mid twenties now. There are so many "shoulds" I am told society is expecting of me. And I cannot meet them.

I cannot get married to someone for 60 years anymore. I know the true expiration date is much shorter.

I cannot ever have children. It will not happen naturally. We cannot afford $20,000.00 of fertility treatments and rounds. There are very very very few adoption agencies that will let a single woman adopt- and I do not have a job or degree to my name. Just medical debt. Even fewer places will want to put a child into the home of someone who is actively dying.

Future looks real bright for me, eh?

There are times when I try to think ahead and all I can see are clouds. A thick fog permeating everything, calling and forming shapes but no real indication of what the reality is.

My darkest days I look ahead and I see nothingness. Not for me, just, but...

I know how smart I am. I know my endurance. I know my internal resistance.

And I worry, I truly do, that when he goes, I will take the world with me. It is one of my largest fears dear Reader.

Oppenheimer stopped.

Without Wash around, who will stop me?

I will come back to muddle more on this.

Bad day already

Honestly the only good thing so far for today is that we have a *tiny* bit of extra birthday cash from Wash so he ordered lunch for us today so I wouldn't have to cook.

I am tired. And angry at people today. Grrr.

But, this cheered me up this morning. Some of my herbs are still alive, three of my bell pepper plants alive, five of the original nine tomato plants, a bunch of green beans, the stevia, some broccoli florets and as presented below;
The watermelon plant is very happy. This is the first big guy. There are more growing.

I've named him Bill Murray-elon.

Our Story Coverage links

http://consumerist.com/2010/08/cancer-patient-loses-coverage-for-making-425month-too-much.html

http://www.phoenixnewtimes.com/2010-08-05/news/til-death-do-us-part-they-got-married-then-everything-changed/

What's been missed

Been so gorram busy last 10 days. It's finally going to calm down some, and it's chemo week again.
I will have a bit more of a chance to rest.
So, I pulled off the Surprise party for Wash on Sun with him actually being surprised! Awesome. We had almost a dozen people over, and he was smiling and just so happy throughout the evening and night. We were all dressed up in our 60's/vintage wear and played Bingo, watched Mad Men, and ate Chex Mix.
Great night. He had birthday pie.

We got a gift from a few friends and Wash and I now have a lot of time and oppertunities to go to the movies- all his frat bros gave him "date cards" like to restaurants, movie theatres and such so we could go on dates like... normal people our age.

And then today in the mail we got a card from one of his old friends back in the Bay area; a sweet note and a cheque that will help us cover bills for about a month.
To Wash - and me- a month is a very long time. And to have that chance now to just be able to be a husband/wife for a few weeks... I'm still a bit in shock.

I've been trying so hard lately to be good with Wash, agreeable, and to just stay calm. My emotions over the last two weeks have sometimes felt like they want to take control.
It's been harder to have my internal talks, the way to help soothe my torn psyche. The rational mind that is responsible and never stops, gets everything done... but doesn't feel or connect with Wash. And the Tashi that just hurts to be going through this, the one that just wants to rail and cry and damn the g-ds of a unfair world. But she doesn't really help anyone or anything, just locked away for now, dusty.

The things your grandparents never told you? Love is the most soothing and wonderful feeling- but it comes with the very dark side of loss of that love.

Made it through

So our story finally comes out this week.

http://www.phoenixnewtimes.com/2010-08-05/news/til-death-do-us-part-they-got-married-then-everything-changed/


There it is.

Mostly Good

Alright. 1 MRI, 2 doctor consults, 1 social worker consult, and breakfast for 5.... we're done for the time being.

Another clean MRI!!! Yay!
Wash is as happy as he can be, being this tired.
It means there is a good chance he will go maybe another 2-6 months without too much worry of another tumor developing. This is also a good sign he should be able to finish his year of chemo come Dec, the Doc says he looks pretty good physically to take it. The longer he can take chemo the better chance he has of living maybe as many as 2 or 3 more years.

We also met with a super awesome social worker who wants to try and get us some more services, and it's a start. I'm feeling hopeful. He will see his birthday this Friday and there is a chance now he might get one next year.