Poor wash almost one am and the nausea and vomiting starts. Fucking cancer. my poor tough guy.

Statistics

There has been some talk in my state about our healthcare system (and our insurance) AHCCCS; people who have different insurance keep saying the co-pays should be raised higher, more preventative services cut, "everyone" is abusing it...

I want to show some real numbers so you all can understand, for the people on MercyCare (Wash is) they are the sickest of every one. Those people are all dying, have severe chronic conditions, many are disabled or also on Hospice Care. To qualify for MercyCare you pretty much cannot be working- so there is little to no income that the patient actually gets. You can see my old post here http://washandtashi.blogspot.com/2011/01/oldies.html on how much a disabled person actually receives versus actual income.

But today I want to talk about more numbers. The little numbers that people in my state are arguing over- instead of actually saving lives of its citizens-

Our Doctor office co-pays vary for his GP, Internist, Oncologist, Counselors... the smallest is $5/visit the largest is around $35.

In the last 4 week cycle we have had 17 doctor visits. Let's go with the lowest number $5 co-pay. 5x17=85

So, right there in a normal month about $100 goes right to doctor offices. Wash is not the only one who is terminally ill in AZ so imagine other people who also have more than 10 doctor visits a month; on a fixed income, especially for those who also cannot work $50 a month is a LOT.

How about prescription costs? Those vary from $4-$10 per medication for the Rx that are covered- again a 4 week period there's 15 different Rxs. Again, let's go with the lowest co-pay cost and that's 4x15= 60

Let's add that to the other amount and already in a month we've got more than $150 out of pocket costs. NORMAL MONTH.

Let's also count in the Rx that are NOT covered by insurance (about 6 a month) and of course we bear the entire cost of those which usually comes to around $600 or so a month. Sometimes more.

Arizona is asking those who are already part of the sickest AND poorest population to add more. Now again, $5 may not seem like a lot, and for those who are healthy and visit the doctor once a year it is not a lot of money.

But for the people on MercyCare of AHCCCS - again literally the sickest and poorest people in the entire state it's asking a lot. Imagine tomorrow you cannot go into work, in fact, you might never work again- but you can't get unemployment. Imagine then you have to travel at least 10 times a month to various doctors- how do you get around now? Cars are expensive, bus is unreliable and your insurance company no longer will have a "Dial-A-Ride" service. Ok, on top of that you need to still feed yourself and your family. And pay rent. And utilities. Oh, and remember to add $100-900 on top of all of it as your out of pocket costs for everything.

Welcome to being sick AND poor in Arizona! You're kinda screwed any way.

We may be very poor, my husband is dying, but I still have a voice. Taking away healthcare for the poorest and sickest...?

How is that humane?

I am poor. I am also a human being, a Citizen of America imbued with rights to Life NOT "Life... as long as you are not poor".

Healthcare IS my lifeline!

I fear for the future here.

Outside the Box

So Wash found/got out an OLD game that is like a space version of "Monopoly".

I took a look at it and we've decided to mod it out a bit and make it into our own Firefly-based board game.

He's been happily sketching various ships and a firefly of his own for the evening.

It's been harder for him to speak correctly today, mixing his words a lot of aphasia, but he dealt with it fairly well. I was not as patient as I needed to be through the whole day, but getting our neighbours to quiet down helped.

So we make and play our own Sci-Fi /Fan games. He's 26, a geek, and dying. What else is there to do?

... I say this as the same person as well who still has some 40K mini's to assemble and paint. I spend my time the best I can, making him smile and laugh and forget the pain.

Synchronized Sighs

I am going to need a lot of strength coming up. One of Wash's parents we just found out is also very ill; we are not certain how bad right now but it could potentially be about as fatal as Wash's type of cancer.

They were not planning on telling either of us originally I guess. Wash is dealing with this the best he can- which is to say he's been keeping himself as distracted as possible. This doesn't make my life any easier either; Wash gets clumsy and becomes a bit dangerous when he is very preoccupied with one thought.

I am doing my best to keep him happy right now, or at least upbeat. As hard as it is to say, I almost wish this would be one of the things that Wash forgets in a another day or so. Sadly, I doubt that- the universe would be too neat and clean to work that way.

The cats have been helpful to us both as of late. Aelphie spent a good deal of time cuddling with me and letting me hold her when I was Aspie nonfunctional. Leto has been his usual purr-ball self and has been sleeping through most nights so we've allowed him into the bedroom with us. Aelphie tends to stay down at Wash's feet or on my pillow next to my head and Leto tends to curl up against either one of us or if he can squish in between. He is an odd kitten but it is so nice to wake up to the soft fur and the purring. Watching them interact and just on their own- plenty of in-home entertainment there. Every time I look at Leto's tail though it reminds me of Golden Retrievers and how much I miss having one around.

On top of it all I also have the opportunity to present a paper of mine at a Symposium - right at the start of my "honeymoon". I've been thinking and will be sending out an email tonight with some options for me to figure out working both. It's a really nice feeling just to be asked/nominated and Wash has been doing his best to really remind me it's a "Big Deal" and tell me how proud he is. My mum has weighed in too and is "swollen" with pride. This of course conjures up wonderful imagery for me but I also know she means it, and it does cheer me to a degree.

I am having to stay away from more and more news sites and radio, television and a lot of media. Dealing with keeping Wash happy and alive and me functional is hard enough, add in all the worry that compounds it from my state being run by people bent to kill my husband (and me too- I'm poor!) and it overwhelms me. I prefer not to think too hard about it, much like Wash tries his best to ignore the Cancer during the short times he can. I wonder each day if it will be today that the mail brings news his insurance is cut? Or cut back? Or my own? Those thoughts keep me up at night when Wash is finally down asleep.

I don't really like thinking of the future that much- not the real one. It will be painful.

Even the hard frustrating days I am still glad for; they mean another day with my love and best friend and another day where we can try and learn to Be.

Kiwis out there?

There's between 50 and 70 of you awesome kiwi's out there in NZ that read this blog.

Let me know you all are ok?

To my regular readers; if you can, go donate blood. It's always needed. Call your local Red Cross and ask how you can help.

What the hell, is going on, the clock ticks on

I am beyond upset. Hurt. Angry. Pissed. Crushed.

More family issues around here, this time on Wash's side. We're finding out that either;

A) They are willing to also lie about cancer as a way to manipulate Wash

B) That they have been lying to Wash for an extended period of time with no intention of telling him a *very* important truth

I hate seeing my husband cry. I hate seeing him in pain that I cannot relieve. His burden is so heavy and the people who he needs love from are just fucking with him. No one is speaking to me, and I'm really the one who makes the decisions. I am starting to see however the origins of Wash's communication issues.

I am proud that he is trying to stand up for himself though. It's a real issue- frontal lobe damage and all but he is trying. I am doing my best to assuage his "guilt"- he should have none. Why should he feel guilty if someone who he trusted lied to him? Why should he feel guilty if someone he loves ignores his explicit wishes?

He is trying so gorram hard to just live with the time he has left, and the people who are supposed to be there to love and support him are trying to get him to die on their schedule.

People cycle through grief at different speeds; however I am having to learn on a real hard curve at what point someone at a different place in the cycle can actually hurt Wash by what they say or do. There is a lot of selfishness going around and it hurts me that it's not going towards the good of Wash. It's a way to manipulate him, to humiliate him, to use him. I hate that. As much as my own pain is present I never forget that it is about my husband and what he wants with the rest of his life.

He has the cancer. He has already lived longer than medicine says he should. He still has his personality if not all of his memory.

More than that he has said he wants to spend his time with me. I'm thankful. We never really got to have a normal start to our marriage- his tumor was affecting him within weeks of our marriage and then before even the first year was up we found out he had terminal brain cancer.

I'm about 3 weeks away from our 2nd wedding anniversary. Wash wants to enjoy the time with me. We've finally got a date set as well to go away for a week, a real vacation for us. He is off chemo and this honestly might be his plateau- the best we get. He wants to give that to me. Again, I am thankful and honoured for it.

I have Aspies. Maybe that is why I just cannot see why the people who are also supposed to love him ignore his wishes for their own.

All he wants is to love, play, create, and live as long as he can. On his terms.

He's a married adult. I support his wishes. He's 26 and dying of brain cancer. I know how scared he is of the end, of the absolute terror of losing parts of himself as tumors come and crush different parts of his brain. He doesn't want that, and I want him to go happy and in peace. No pain.

Why is it hard to understand that going against his wishes and wants disrespects him? Why is it hard to see that the disrespect hurts him?

I don't understand the motivation for making a dying young man suffer more. He already lives in Arizona, the state will kill him soon enough, why add to his pain?

I just don't get it.

Ask, Listen, Respect

So I was waiting for the other shoe to drop.

Thankfully it's only metaphorically a flip-flop, but gorram. I did not need this specific type of stress on me right now.

Or Wash.

He just wants people to ask him what he wants, listen to what he says, and respect his wishes.

Apparently that is too hard for certain people to comprehend or respect/fulfill.

Unflushables

:D

OH my Lords of Kobol!! I'm FINALLY getting a vacation/honeymoon with Wash!!!

The parents worked with me and the doctors and Wash and I are going away (locally) to a nice resort for 7 days.

I'm still in shock. Gotta make sure Wash lives to enjoy it with me.

We have a week in a lovely place up in Flag. A full suite. Bedroom, living room, jacuzzi tub in the bath, full kitchen and dining room in suite... and we are close to the Grand Canyon Railroad which Wash ADORES.

So now I'm excited and nervous for it. Is that normal? I haven't had a day off, no "weekend" for me for about two years now. As excited as I am getting for this I am also so aware of everything that could go wrong before, or during. It's hard to be the responsible one and to have to try to NOT think of all the horrid things that could go wrong and instead try to focus on the good and making something to remember - in case this is all I have of him.

Our original Honeymoon was a 2 night stay at a wonderful little B&B. We had always intended to save and go for a nicer and longer trip "in the future" - well, the future became Cancer and all the "fun" that came with that.

So now there's a chance for a week to ignore that and pretend we are just normal newlywed 20 somethings- happy and hopeful. We can pretend. Maybe for that week I'll convince myself.

Tired

This to us is Peace on a 'slow' day. (Aelphaba)

Slice of Catloaf

So more peer reviewed proof that medical cannabis could/can LITERALLY help extend my husband's life.

http://www.btbuddies.org.uk/index.php?option=com_content&task=view&id=1471&Itemid=85&utm_source=twitterfeed&utm_medium=facebook

I love the conclusion; Altogether, our findings support that the combined administration of TMZ
(Temodar chemotherapy) and cannabinoids could be therapeutically exploited for the management of GBM.

This is good as well as I can use this in his medical cannabis application.

Small bits of good news can make the difference. Today, Wash is having a bad "brain" day. He is not speaking correctly, mixing some of his words, very forgetful- more so than usual.... but it's wonderful weather so I took him out this morning and I'm going to take him out again this afternoon. Walking and being in the sun tends to always cheer him up.

Taco Tuesday again tonight and I'm looking forward to spending a bit of time with the family. Hopefully it will go well. It's the small things that count, like dinner or a walk or a cat curled up on a lap sleeping and purring.

I'm trying so hard every day to keep it all together. Some days are better, some are worse. I at least am happy that they all so far end the same way, with us telling each other "I love you" and falling asleep next to my best friend.

A bottle of Ginger Beer

I am being covered in Wash kisses today. Aelphie enjoys her 5th birthday today and her special wet-food treats.

Spread some love around today dear readers. Share some love.

Catfight

Mostly a calm bit of time for us here. Resting a lot, laughing, and taking a lot of walks. The weather here has turned almost 'nice' so it's quite wonderful for the 2pm or 11pm walks.

The kitties are doing better together. We've figured out how to get both of us and the two cats on the bed all in peace. Seems to be working well for now. Leto continues his training and will "fetch" for me and Wash now and he has started to go out for 'walkies' with me to check the mail. Spoiled, but very smart kitten. Aelphaba is also to my amazement turning 5 next week. I'm lucky to know when her litter came in so she has an actual birth date Feb 14, 2006. Leto we know the month (April 2010) but not the day. She'll get a little serving of wet kitty food for dinner that night and a new catnip toy.

Wash wanted to watch "The Madness of King George III" this morning. It is hard for me. Half the scenes take me back to the summer when Wash was being changed by his tumor (and we didn't know it) and half the movie reminds me of the last few years of my grandfather's life before he succumbed to his Alzheimer's.

Wash does not remember much of 2009. I purposely do not tell him things. I'd rather he not die with the knowledge on him of what "he" did when the tumor crushed his frontal lobe. The anger, the violence, the abuse... sudden and complete personality change. I try my best not to think of the time, not to dwell on that specific past, but it haunts me. I remember.

Glioblastoma is fatal. I try my best to compartmentalize so I can focus on the now with him, enjoy what we have left because we just don't know. It might be 2 months or with amazing luck maybe maybe 2 years. It is hard to say it and hard to accept. However, it is the reality.

I think the hardest thing to face right now (thankfully now that money for this month is not a worry- thank you) is our infertility. There is no hope for either of us to graduate before he dies. We cannot buy a home, or even a new(er) car. There's no job or career for either of us save me taking care of him and him watching me. Nor can we have a child, which is what I know both of us ache for. I see the pain and sometimes tears when he sees the children of our friends or hears about another pregnancy. While we can be happy for them and rejoice at the love that comes from it, it just burns in me- perhaps in him as well. Societal outcasts really. Not by choice.

Cancer is not contagious but it separates us certainly. Wash was 25 when he was diagnosed. Told very likely would not make it to 30. There is no space in society for people like us- the ones who fall between the cracks. Not teenagers anymore and our parents cannot help. They have other priorities and responsibilities. They do what they can. Services are being cut back left and right in our state. We're screwed anyway, but it seems like we just keep getting more shit thrown on top. Higher co-pays, less medicines covered, less doctors we are allowed to see...

I don't often like making comparisons but I have to every time the news comes on with info on Gabby Giffords. See she and Wash both had frontal brain traumas.... but she is getting all the re-hab she needs to live a long healthy high quality life. Wash, who is just 26 has been turned down over and over (even after his oncologist and a social worker tried) for the same type of rehab. The kind that could help him to be more independent in his last few weeks or months. Know what the difference is? They are both young, married, citizens of Arizona, victims of TBI, but Gabby has heath insurance.

So I get to make the best of the days that I am given with him, doing my best on my own to be his everything, help him with everything, and hopefully come April Wash is still alive and Gabby is standing and waving goodbye to her astronaut husband.

The only difference is money.

Death Panels do exist. They are the ones with the AHCCCS letterhead saying that my husband is not worth the cost to the state to keep alive and with a Quality of Life - like the option that has been given to Gabby.

The people who run my state government are arguing over material things right now. They are not talking or trying to save the lives of the very citizens of their state.

Maybe the thought is if you kill/let enough of the poor and sick die; then only the rich will live to vote?

Cannot understand how else to rationalize it.

Break it down

Catching up with some friends today, driving around, pharmacy trip, and it's Taco Tuesday so into Pho-town we will go for Family Dinner.

Things with Wash have been pretty nice lately- he is trying so hard to work on communicating with me and I am doing my best to just have more patience and less anxiety overall. The kitties help. Leto is finally big enough that he sleeps through the night so he and Aelphie have been sharing our winter bed. I have learned that Aelphie loves the corners of the bed and Leto loves covers and snuggling next to one of us. The purring really does help us both to relax, as does the love of the sweet cute fur-tubes.

Wash is cuddling with Leto right now. It's cute. Leto will "groom" Wash's beard.

We got through the Moff's "Jekyll" last night. Great show but harsh arch.

That's not what's really on my mind though. I'm frozen. Mentally. It's taken me a year to get to the point where I can really understand that my husband is dying of brain cancer. Now he's off chemo and it's not a "Hey! Done with chemo!" thing, it's a "I want some measure of Quality of Life before I die". I can understand that. I support him. Still hurts. I have hope, I do hope every day that I will get to go to sleep in our bed with him and wake up every morning to his living face- but I am not living in some fantasy world where I think he'll have five years. I know how lucky we will both be to get two or maybe three.

He is trying to decide on what he wants out of his life. Aside from children. Though we can have fun trying, it's not really going to get us anywhere. There have been three newborns that have come near/into our lives in the last month and to be honest, it stings. I'm so happy for them, but it just feels like a shock or burn to me that we cannot have that joy either. I have learned firsthand how hard life can be and yet there is still the part of me that just weeps at the unfairness of it. I know rationally that nothing is fair and I should be and am happy that I still have my love, but I can also still hurt so much that the few things out of life he wants are things that I cannot really do for him.

I have spoken to Wash before this, he is ok with sharing. Death is quite stigmatized in our country and he wants this ALL to be recorded. The good, the bad, the ugly sad days, all of it.

I just don't know what to do. I don't feel "free". There's no good routine yet, no vocalized "last wish" type thing... just us. Two geeks spending the day together.

I keep thinking that we have "time" now, we can be like newlyweds... except everything that comes after that part is void for us. No graduation, no house, no child, no career... everything the West defines as what is needed to be an "adult" member of society is stripped away. Where does that leave us?

It's just a very confusing time for the both of us and it seems like we have to decide right frakking now what to do with his / our life.

Last night-

Wash and Tashi watching a re-run of "The Soup" and see a scene from one of the reality/dating shows,

W: Oh thank the Gods! I never have to deal with that crap again.

T:Fuck you!

W: Huh? What?

T: What do you think's going to happen to me after you're gone?

W: Oh, crap. I'm so sorry. Want me to design you a Cyborg of me?

T:Always the romantic. Just don't die. That'll work for me.

W: Trying. I'm tryin' love.

T: There is no-

W: Don't say it.

Made for each other we are. He truly is one of a kind.

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.