Friday, December 31, 2010

You say Goodbye, but I say Hello...

What an amazing and exhausting and thankful and angry year it's been.
Brain cancer does a lot.
So does being newlywed.

The end of 2010 will be like any other day though, it ends with us together, holding each other as we fall asleep.

At the end of the day/month/year I still have him and he still has me. I consider that a year of accomplishment.

Be safe and I hope a very happy New Year to all you dear readers.

Tuesday, December 28, 2010

Whiter shade of beige


Wash is officially 'off' active treatment.
No more chemo.
He still has cancer. He still is dying.
He is doing it on his own terms.

He will be monitored with MRIs, and blood draws still, but he is not seeking active therapy anymore.

He is responding well to some new meds, so they will be increased. His Quality of Life right now is the highest it's been since before the tumor.

We were told to go and "live".
I'm not even sure what that means.
More when I can process all that's happened today.

It's both good and sad news.

Saturday, December 25, 2010

Pics to come

Still having a fangirl squee over here;
Best husband ever!!

He got me a sonic screwdriver! (10th Dr model)

:D !!!
It lights up, sounds, writes, and opens his new TARDIS cookie jar.... ;)

Hope you lovelies are having a great day!


Slept in for an hour-ish in my glorious flannel sheets.
Woke up to cuddles with my still alive for another day husband, and a kitten that climbed under the covers and a cat that nuzzled with us on top.
Coffee was made for me, and while I made Wash a cuppa tea, I also had a chance to slip the last stuff into his stocking!

We're watching Dr Who- halfway through Smithmas- and I will be baking sweet orange rolls and bacon when it's over. Then, presents and a few people we love stopping by in the afternoon.

This is literally my first Christmas where I have called the shots, and been able to spend it as I want to.
It is so far stress-free and just... relaxing beyond words.

I wish the same joy, peace, and love to you all today, regardless of anything. Peace, joy, and love to all humanity out there.

Friday, December 24, 2010

Pass it on

So, I don't really buy "new" clothes. New undies and socks yes, but I've bought most of my clothes second-hand since Wash first got sick and stopped working.
My parents taught me from an early age that there are always people who are less fortunate than we are, no matter how low it gets. They taught me that sometimes giving up some "luxuries" for a period to be able to give something to others was a just cause.
I normally do an "adopt an angel" from the Salvation Army tree - I take the savings I would have had on the difference from new clothes to used and provide a kid or two with gifts for Christmas.

I didn't this year; I honestly just was not sure of funds and I didn't want to make a promise to a kid that I couldn't keep.
About a week ago I had an idea; take the extra funds left from some gift cards we had laying about ($3, $6 etc) and buy whatever little toys we could. Wash and I did just that the other day. We brought them down to our local Fire station and the guy's face just lit up as we dropped them off. Our city has quite a number of needy families this year, and not as many donations. Sure $6 would get me 2 gals of gas, but it also means that a child can believe in santa/miracles/magic for just a little longer.

Living with Wash helps to change and focus my perspective. Some times the present is just as important as what the future might be. Adulthood and maturity are a time for worry and cynicism, not childhood.

It makes me happy to know I put joy, even just a little, into the world.

Maybe it will catch on.

Wednesday, December 22, 2010

Happy Christmas

Beaming over here.

GREAT evening. We went over and did a Christmas evening with friends.
They all LOVED their gifts, and my friends got me a Calphalon cake/dessert cookware and storage set. So I can bake cakes, brownies etc and have the Calphalon tupperware too! It's so lovely and perfect and very useful. I'm happy.

We trimmed another tree as a group, and played some fun board games. Even made some good hot chocolate.
It was fun, I laughed, and Wash assures me I did not make any social mis-steps tonight so I even feel a little bit good about going out to socialize.

It's a good day.

And I still have Wash at the end of the day. I really cannot ask for more.

Friends, Laughs, And trimming the tree w nerds and star trek ornaments this is the perfect christmas. Smiles for everyone!

Buttless chaps

I had a rather fantastic evening with my Wash last night. We had some new (gamer!) friends come over and hopefully now have a few more people to hang out with and to play with us on Games Night or to play 40k with us.

Wash and I spent a fair amount of time cuddling.

I also had a really awesome dream wherein I met Patton Oswalt. Oh, Wash was there too. I think we were all in an airport or something.

Tonight we are doing the first gift exchange with friends and also get a visit from a couple that we just adore. I'm fairly sure they adore us back. They live a couple hundred miles away so it's always nice to see them in person.

Today also calls for a nap for me.

Tuesday, December 21, 2010

Danger Zone

There's some crap come up with my family.

I have to make a decision I don't really want to. Or, more that I agreed years ago with the decision, put up with flak for it for years, and now have to defend it at the possibility of losing a family member.

I know that's vague, but I don't want to talk more about it until I have made some more decisions.

I need time away from Wash to wrap his gifts. He literally is almost never out of my sight, so finding more than 3-10 mins away is a bit of an issue. Gorram it.

Tried to see the lunar eclipse last night; cloudy. This is my disappointed face.

My confession for today? What haunts me is that I know given enough time and resources, I could probably figure a cure for GBM. Maybe. But I will never be able to do it and save Wash. I just cannot "save" him.

Our first Christmas together he went and found a copy of a game that was made in the 1970's that I loved to play. Found a new one and got it for me as my present.

All about Time really. Never enough is it?

Sunday, December 19, 2010

Pipes Always Win

Neighbours decided to use their place for "band practice". Nos. We have shared walls. You are practicing amp flourishes. Just, no. Asked them twice to turn it down. So... I plug in my home theatre speakers and blast "Scotland the Brave" for a half hour. Bagpipes win.

Friday, December 17, 2010

Oh wow... Neighbours in the next home over having LOUD sex so much so the roommate just left, poor guy. To his credit she sounds very pleased! Our tv is on now.

Something's Wrong

According to Wash I've been having more tics lately. I'm not really aware of these until someone tells me, so now I'm all stressed over trying to figure out what I'm stressed over.

I fought and managed to keep my health insurance and food stamps for my family so we can eat for the next few months.
I have the car in a semi-working order (we found out yesterday the heater AND A/C now are bust. I will have to figure out how to fix and pay for it, or else I need to figure out how to get a new-er car. Betty is going to be 15 in 2011. That's a good life for a car.

I have been able to see and speak to some friends this week and have been cooking up "Holiday Cheer" and making my home smell delicious.

So, I wonder what my new or bigger stressor is now?

I had someone speak to me this week; the conversation started off well enough, X was trying to give me some support- "I can see that you do have to work to take care of Wash and I see that, maybe no one tells you that."
That part, all true and good.
But, then, somehow X got onto this point... "I'm not here to judge you. But you need to figure out what you've done wrong(in the past year since Wash's been sick). You have to fail and make mistakes, and you just won't learn until you do. You need to think hard until you figure out what mistakes you've made and correct them."

.......... What?

So, all that personal therapy I've been undergoing and the issues I have been trying to let go of... back.
Why of course I've made mistakes, I let my husband develop brain cancer until it was too late! Stage 4!
And I have such control of course it's been my fault every time there was a medical frak-up, or his insurance was cancelled...
And my biggest mistake, oh, why that just has to be deciding to have my gallbladder get infected and melt. I just adored being in the hospital unable to work or care for Wash.

I just.... how the hell am I supposed to speak to these people? I have kept my husband alive for well over a year now. Believe me, if I had been making more mistakes he would be dead right now. His life depends on how correct, how efficient I can be, how close to it I can get.


I don't understand when people talk around a subject. If you feel I did something, say it. Otherwise I spend days suppressing my own immune system feeling like shit trying to imagine all the "wrongs" I have done.

So, frak that crap. It's a very Tennant Christmas over here and we are snuggled in against the cold, I make hot mint-chocolate to drink, and we have cats to cuddle with as we watch the new Dr Who dvd's we got as an early giftmas gift.
Focus on the good here.

Wednesday, December 15, 2010

Heavy weight

There is a lot of shit-talking going around my State right now about health care, and funds, and who should live or die- and who really is getting to make those decisions.

I just wonder...

Do you all think that Wash wanted brain cancer? That he chose to have a softball sized tumor in his head? That somewhere along the line he went, "Oh awesome I just got married and am close to graduating college with a high degree- now I really want to fuck it all up and permanently loose my memories?"
He was not covered by his parent's health care. I did not get insurance through my job. We used the campus health services. We used the community health services.
Not one of them caught the cancer or tumor before it hit stage 4.

There was a 1 in 43 million chance of this happening. How do you prepare for something like that?

I'm waiting for a 'charity' to step up and provide us income for a year. Or some Church. That is what my State and its representatives have told me. They won't help, the Federal government won't help (too young and no children- sucks that you're infertile, you get to be poor too!) there has been no "community" - aside from what I beg for. I still remember the AHCCCS judge saying to me back in May, "We can do nothing for you, have you thought about moving to Canada?"

My own State would rather me be another country's problem.

We are young.
We have no children.
We cannot work.
We do not receive assistance outside of food stamps. Starvation is a worse death for him.
Our State turned us away at every turn for help.

Why do Republicans and Conservatives say this is my/our fault?

How many young 20 somethings from a lower-class background working through college have $700,000.00 set aside for medical care, operations, hospitalizations, medications, Hospice, bills, joblessness/ inability to work, self sufficient funding for the rest of your shortened cancer stricken life?

I say "Help, please?"

"Cancer? Poor? Fuck you."

Dreaming Little

Mostly been keeping busy and buried in paperwork whilst Wash sleeps off the chemo this week.

He's up for maybe an hour or so in the mornings, sleeps through the afternoon and is up from 6-7ish to 1am or so. It's frakked up his sleep cycle something good.

We have friends in town, and more coming in. It's really wonderful and I know Wash is happy to see them all. He can't really remember when the last time he saw/spoke to most people was, so it's always a happy event for us to have friends over.

It's taking him some adjustment though to get used to the idea that the status quo he's been going by for 13 months now might not apply anymore. The conversations we have are some tough hard words that I really never intended to be saying when I was this young. He talks of travel, of Hospice, of his lost friends, of wanting a legacy...

It's holiday time though so we have friends in, and it's getting colder (in theory- I live in AZ. Hit or miss) so there's more ... incentive for me to spend my days in the kitchen messing around with new recipes; right now I'm working on cranberry breads and a type of Red Velvet Brownie. It's also a great excuse to help Wash pack on some more pounds. He's finally averaging over 150 lbs, which is great- this time last year he was around 137 ish. I'd ideally like to get him back up closer to where he was in the 180s- but that included a lot of muscle mass he's lost in addition to the fat. His body has changed a lot as a result from the cancer and chemo.

I've been battling with AHCCCS and DES to prove to them that since Wash is still alive after 12 months he still does have brain cancer and he's lucky he's still alive - so far.

It feels like something acidic eating away at my insides every time I have to explain again and again that yes, he is still dying, and yes, he is impaired and will never work again. Last week the GBM community -among many others- lost a great heroine to me, K, who had lived over 5 years with GBM 4. I cannot even describe what I choose to take on just in the hopes Wash might live 5 more years.

It's hard for me. We don't really, can't really, talk about the person who should have been here with us this Christmas. I am not sure what pains him more, losing me or losing the chance we had to ever have a child. I don't even know how much he really thinks on it, or if like me, it just hurts too much on top of everything else to ponder on. It's like a wasp sting when I see children or my pregnant friends. I can't really help it. I'm still able to be happy for them, it's easier for me now to be happy for them, but it just underlines more to me what it is I have to face. What I already have lost. Is there a point to extended life if the next generation will not know, remember, or care for you?

We have the tree finished with the trimming. Coloured lights, twinkling... candles around, sweet smells in the air... I have to try and be happy. Think of all the good that we still have. The good we can still do for others.

Same as last year; a bittersweet Christmas.

Thursday, December 9, 2010

Just one thing

Someone's been slippin' Hope and Positivity into my food and/or drink. I swear. The shit keeps raining down, but somehow I'm feeling fairly good through it.

Wash is on his last chemo cycle for the year. Hoo-rah. However, he went all crazy about it about a week ago so I've been dealing with him for a while... my patience has not been the best this week. I get frustrated when he freezes up and says anything he can to fill the space. Most of the time he lies. I know it's part of the cancer. Part of the surgery. Part of everything that is wrong and inhuman about brain cancer. I hate myself for it too. I hate that I still hurt when he lies like that, and I know he's not even aware of it happening... it still hurts. He is not doing it on purpose, and I honestly think he doesn't even know half of what his brain makes him do or say.

I still hate thinking about the future. I had an idea this week, something that I've put feelers out on and something that could grow into my own personal business in a year. Something that I could do and be happy about. It's wonderful, and still painful to think on.

When we married we exchanged parts of ourselves with each other. So, it feels like there is a part of me that is dying along with him. I don't know really if I can live another 40 years being happy with a half heart. Maybe.

The cup overflows and I am still stuck looking for where the liquid is coming from!

When I first met him there was a resonance between us. After he dies, it will be a slowly fading echo of a sound. Of a feeling, his touch. How long before I forget what his voice sounded like? Or how his hugs felt?
How do we quantify the time spent or lost with someone?

Existence continues on. Time does not stop; though in theory it could move around. He matters to me. He exists as I recall... but even I know it's a facsimile of an echo.

Despite the overtones, I have been cheery. We got the tree lit. The kittens continue become less aggressive toward each other and more friendly and cuddly. Leto still tries to groom Aelphie when he catches her asleep.

Life is stable right now. Is that good enough?

I have to think, it hurts so much because I love him so much.

Monday, December 6, 2010

The Golden Path

This shall be brief as I still have to do my last class and turn in my two papers today. Also, kickass and go me for getting my Finals done and whatnot!

So, I got a call from the gal who manages the donations the Fraternity (Alpha Rho Chi APX) and a bunch of you kind people under the auspices of a wonderful blog donated a large chunk to us. I am still mostly speechless, so I will compose myself and write more on this later.
Right now I'm just amazed by the kindness of strangers and the thankfulness I have. You all are taking the worry off for about two months; utilities, heating, a portion of Wash's medication, Doctor Co-pays, Gas to get to the hospital, Warm hats for Wash, socks for me, cat food...

The relief of not having to worry about some things, at least for a little while, it's one of the best gifts I could get right about now.

So, this Hannukah/Christmas so far I have gotten to celebrate crossing the 13 month mark with no tumor recurrence for Wash, booked my birthday appointment for the Gal's Salon day (and even the Wash-sitting is taken care of!) got pumpkin pie, 2 new tires, and a load of stress taken off me financially so I can focus on the mountain of paperwork I have to fill out affirming that Wash is still alive, but still dying of cancer so he needs medical insurance.

I'll have more to say later, but for right now please accept my humblest thanks to all the donors who have sent help.
Thank you.

Thursday, December 2, 2010

Too much talking these days

I have been buried in finals these past few days. Will be through the weekend. So much reading and writing. However, it's good for me, and I like the chance to focus on a way to improve myself. I learn with each paper I write.

It's been a long few days.

Wash has been struggling with life lately. His MRI was this week, thankfully and astonishingly it was clear. That makes 13 months since his surgery. Defies odds for Glio. However and naturally it caused a bit of stress upon him. Which then passed along to me. He was not sleeping very well. Therefor, I don't sleep very well. Worry goes hand in hand.
He is on chemo next week.

We spoke to his oncologist. Right now Avastin (different chemo) is not an option. So he can continue his Temodar for another 2-6 months or stop chemo altogether. We're meeting back with her in about 3 weeks to go over his decision. I've told him I'd support him whichever was his choice. That doesn't make it easier for me to do, nor does it maybe make me happy, but this is not about me. That part is about him, his physical body, his Quality of Life and his decision. I'm just there to support him and see his wishes are followed.

He at least has finally agreed to try an anti-depressant. I'm really hoping it will help. He's been listless lately and just overall depressed. The truth he has been running from for a year has finally built a wall he can't ignore anymore. He has cancer. He has a deadly type. He will not live to be 60 with me and be a grandfather. Now, we might get a year or two more. Maybe three. And those can be good years filled with wonderful times. But he is a 26 year old man. He is having to really and finally accept he most likely will not see his 30th birthday. He's been in denial about this for so long. I'm not "giving up" on him nor do I think this means he needs to not live. Accepting his disease allows him to be free of the fears and enjoy what he has, not what he might have lost.

It's hard for me to watch this. It's hard for me period. I didn't expect it to be easy. But I honestly did not know how exhausting it would be. How tiring responsibility is. How much I long for just a break. Not the end, but just a true rest.

I haven't had 24 hours off in more than 14 months. Not even a "day". I've had three or four sets of about 4-6 hours when a friend came and Wash-sat for me. In a whole year.
Just imagine working 24 hour days, 7 days a week for more than a year. No "Saturday" or "weekend" for you. Just the constant care of another human being.
Tiring just thinking of it, eh?
And the rest of my life, the world goes on. I still have to focus and file paperwork, pay bills, beg for donations, beg the State to unfreeze the budget so I *might* get funds, beg the Utility company not to turn the power off, clean, garden, clean, cook, drive, manage, repair and everything else that everyone has to do in their everyday lives as well. No one else stops because my husband is dying of cancer. It's only my microcosm that is effected, the gal on the other end of the phone working for the Dept of Economic Security doesn't care a shit if Wash and I become homeless or if he dies destitute.

It's hard to have to figure out how to explain to him that no one seems to really care. That being a good person is just not enough to matter. That being so young is just not enough to matter. That dying under horrid conditions worrying not only about fighting chemo but fighting to make sure there is food on the table and gas in the car to drive to the hospital just doesn't seem to matter.
To the Governor of our State Jan Brewer he does not matter. She will be responsible for his death and never once think of him as a person. Senator John McCain and Jon Kyl both were solicited to help my husband keep his health insurance when he was in active treatment. Both Senators refused to even return a call or send a form letter. They will not care about his death, or how much he may suffer without medication. John McCain will never have to worry about paying for anti-nausea medication while undergoing chemo. Yet my husband suffered a whole round without any medication to ease the pain of chemotherapy, due directly to Kyl and McCain's voting. Congressman Harry Mitchell told a voter he wanted to meet Wash to "look into" the health insurance issue. Yet he never once made an attempt to do so, even after we contacted his office personally.
These people are legally in charge. Legally they are killing my husband. And he has to live with the knowledge that they do not care at all about him, his life, or his death.

I find it appalling. I find it disgusting. Morally reprehensible. And every one of them has lived decades longer than he will get.

Life is truly unfair.

I have to take joy in the small things. The happy moments. The colours of the sunsets here. The tastes of the tomatoes grown in my garden. The utter contentment of falling asleep next to Wash. Hating those who have what we are deprived of does nothing. It eats at the soul. I can mourn what has been lost. Not what will be or could have been. And I can choose to move on and enjoy every day of life I have with him. We don't have money, jobs, health, or always food; but I am thankful for every moment of life and love I have with him and am aware enough to be thankful for it.
Unconditional love trumps indifference to suffering and death every time.

If you have health, love, home, security... share your good fortune. If you are old enough and outraged enough remember the stance of those elected officials towards the poor, ill, weak, young, and vulnerable. Remember the utter indifference to suffering of the people of this State. Remember and do something.

Friday, November 26, 2010

A Turkey Based Meditation

I had a moment of absolute clarity yesterday. On food, I really resent my family.

See, they became vegetarians in the 1970s. And my older brother was veggie. And I was born veggie. And for the first 10 years of my life, and the first 15-20 years of my parent's time together the whole family was vegetarian. No matter where we were at in the world we did not eat meat.

Then they changed.
My Brother was the first to start eating beef; after he moved out. Then when I started High School my mum was eating meat.
My home changed.
The food changed.
The scents and smells of my home, my safe place changed.

One of the biggest (not moral) social upbringing I had was suddenly just gone. No one ever ever discussed it with me; either their reason to eat it or a notification that my house and diet might be changing. What was so important growing up, "Don't ever eat meat, we don't do that!" was suddenly null and void.

I am seen as the outcast here. I am seen as the bad person for not "liking" the smell of meatflesh.
This is the same family who I suppose just don't remember every time I remind them of my old job and the fact that meat cooking smells like human meat cooking to me. It's not a tasty or pleasant scent to be around for me. It's strange and because of my work on cadavers and victims I sadly know what burned and cooked human smells like. It's revolting and not really something that puts me at ease or into a pleasant mood.

I still have not ever had meat. I most likely never will. I don't begrudge the people who eat meat, again it's not a moral issue to me.
But I completely resent that my family brought me up one way, brought our whole family up one way... then abandon it and get pissed at me for not "enjoying" the smell of cooking meat.

They created who I am in that respect, and I just find it so demeaning that the way they brought me up, the eating habits I was given from birth are suddenly shit to them or something. I'm the same- they changed!
And they hate me for not changing too.

There is a good reason why I hate family dinners and big meals and such. I think this is a big part of it.
I don't need to have the vegetarian stuff pointed out or read to me from a menu, I have eyes and can read myself.

Maybe I'll try it another way to describe; you are born into a Catholic family. They are all Catholics, you are too, the family goes every week, prays together every night for the first 10, 15 years of your life.
Then in a few weeks your entire family says they are now Hindi and they just bemoan that you can't just drop kick Jesus and start loving Kali.

Each time I try and articulate this though, it fails. I either can't get the words right or the blame and discomfort get pushed back onto me as it's my "choice".

They could choose to respect me too.
Or, maybe I am wrong for wanting to hold onto my identity.

- Thanksgiving went well for my family. We went out to a restaurant this year. 4 star food. And a chef who forgot my vegetarian oder.

I'm glad that crap day is over.

Friday, November 19, 2010

72 hour Groundhog day

Wash has a cycle he repeats about every 2-4 days. Good day, good day, good morning-shitty afternoon- terrible evening.
It's something I've almost gotten used to. He cries. He hates. He yells. He cycles through and faces for a few hours his own grief of dying. And vents it out on me.

He's fine now, back to his normal jocular personality. Last night was a different story though. Last night he just was so upset, so mad. I had made a comment to the effect of "If you keep lying to your family and friends about how you are really doing it only hurts everyone- me and you included."
This led to the "I have 3/4 of a brain, I used to do this, and I can't do anymore, so I'm worthless.... etc" Just imagine that for like 3 more hours.
Of me listening to that crap, and telling him it's crap, and building him back up. As best I could, which is getting worse and worse. It's so hard to get through the days people who are not caregivers just do.not.understand. He's not a child, but needs to be watched and helped like one. He can sometimes make adult decisions, but he still *is* one. He fights to live every day, but he draws that so much from me. I've been willing him to live for more than a year now. I'm beyond tired. I'm at the point where I barely exist as a person or as a separate identity. I feel drained of life.

And every few days I have to work even harder to keep him alive for the next day.

He's my best friend. I'm already trading my life, my will, my freedom to him. I don't even know what if anything will ever come back.

Cancer seems to take everything but Hope.

Wednesday, November 17, 2010


I think (from our talks) Wash is leaning towards stopping chemo after his Dec round and going on Hospice Care.
He's 26.
My thoughts on this will take some composing so I will come back to that.

My happy thought for the day?
He tried to brush his teeth this morning with baby lotion.

The toothpaste tube and the lotion bottle are no where the same size, shape, or even colour but his brain and muscle memory told him to do it.

He says he got about 4 brushes in before he noticed there was no "foam" and it tasted different. (Chemo has fried his taste buds)
No harm, not poisoned.

That's brain cancer.

Laugh or cry.

Monday, November 15, 2010

So much, so little

My day so far;
*Almost 2 hours (so far) between our Insurance, his cancer doc, and our pharmacy. Basically, the insurance is being a dick and demanding the dr's office do the same paperwork over and over because they can't understand a neuro-oncologist is both a neurologist and an oncologist.
So they are refusing to pay for Wash's meds.
And as a bonus we're getting a new higher co-pay so I'm back to pretty much not being able to afford meds. $4/med is not that much.... until you do the math on more than 20 Rx's a month. For just him. Plus all my meds- at least 5-6 scripts a month to top.
I just want his meds so he doesn't die *right now* and his meds so he isn't vomiting or in constant pain.

And I flattened a tire so I will need to replace that ASAP with money I literally don't have.

I think I'm gonna go finish laundry and throw some darts at a photograph of our "dearly elected Governor".
How's your Monday goin'?

At least the active chemo right now is over. "Hard" part, eh?

Thursday, November 4, 2010

One year; Beating the Odds

He has next month's chemo to get through and then we have "the talk" with his Neuro-Oncologist.

There are 3 options he has right now, and they are pretty much the same ones from this year- again providing he doesn't have a new tumor grow in the next 6 weeks or so.

A) Stay on Temodar for another 2,4, or 6 months.
B) Move on to a course of Avastin or enroll in an Avastin/Comptosar trial for 2011
C) Stop chemo and move MRI screenings up to every 2-4 weeks. No "active" treatment; at this point if he wanted we could then qualify with our insurance to get Hospice Coverage.

Meanwhile I'm trying to figure out where we be will over the Giftmas holidays.
Working on projects, trying to find money to pay always continuing bills.
Growing in the garden; harvested my fall peppers and we have winter tomatoes growing and even a winter melon! I pulled a gallon's worth of Basil leaves the other day and gave them to my mum to cook with. I like sharing, that's part of the "goodness" of a garden; it can feed one physically and spiritually.

I'm averaging about 3-5 loads of laundry a week. Maybe 1- 1 1/2 loads are my clothes. I honestly have no idea where all these dirty smelly clothes come from or how he could produce so many in such a short time frame. It's amazing.
Based on my calculations on fill dates I should have about 10 trips to the Pharmacy to be made in the next 7 days. Le sigh.

Leto has recovered from his neutering. He now officially is a 7 lb male! Aelphie and him are getting along a bit better, I even have pictures of them sleeping within 2 feet of each other. Cats. Silly fur tubes of socialized behaviour.

Do better for others than what you do for yourself.

Friday, October 29, 2010

I could make you understand

So... this week. I'm not going to get into parts of it now, it's been both good and bad.

I want to write about something else a bit today. Lately I have not wanted to speak much on many issues. I feel like instead of turning mid-twenties as I did this week, I feel like I am at the end point in my life instead.
I feel both elated for the people I love and terribly bitter at my own fate and life. I hate hearing the voice inside my head saying "I told you so!". Bothers me.

Despite attempts when I was younger it seems I do not and will not have an "ordinary" life. There are many moments of happy calm and stability, but then there are those deep seated moments and days of terror, the dark long nights of tears for fear of a lack of tomorrow, the amazing feeling of just existing with another human being. There are constant stresses and worries. I am torn in so many directions so often I keep losing track of my own self.

Humans all define their own happiness- mostly based on their social construct, but also upon personal tastes. I often wonder at night when perhaps I should be sleep about my own happiness and what will become of me after he dies.

I feel so used most of the time. Used up. The people I associated as friends have mostly abandoned me. The friends who stayed to support Wash took me in. It seems... imbalanced to me how people treat the ill person and their caregiver. Sometimes people offer to "help". That is true. Generically. It is left up to me to separate tasks, assign them, follow up, double check, verify, confirm... it's easier for me to just attempt to do everything and burn myself out than it is to try and figure out how to explain and assign the help I need.
I wish someone would offer to help with laundry. Even just folding clothes.
Or making us a meal once a week. With regularity and reliability. Someone to take Wash out for a few hours once a week so I can have a break.
Someone to offer to pick up his meds so I don't have to make a trip to the Pharm every 3 days, or week, or every day. Someone to specifically say "Hey let's take care of all the bills!".

But those people are absent from my life. I have to find the tasks, and then people who are willing to do it, and ask them, and then hope that not only will they follow through and help, but that it doesn't come at too much of a cost to me. So far it seems like much of 'help' offered comes with some attachment.
Why does it take more work and responsibility on my part to allow for someone to try and make it less? I just don't get it.

I don't understand people. I don't understand relationships.
There just are not enough descriptive words to express it all.

I feel like it was my 64th birthday this year.

What is the Meaning Of Life?

- I get it now. It's a very good "haha joke is on you" answer.

Tuesday, October 26, 2010

Obligatory Post

Happy Birthday to me.

I plan to do as little as possible and laugh as much as I can.

And no ambulance rides this year.

Thursday, October 21, 2010

Quick Reminder

The benefit for Wash is this Sat, so if you are local to us come on out and say "Hi".
And fold some motherfraking cranes to help. ;) Please.
Again, if you can please we are still accepting donations. His cancer hasn't gone away and neither have the medical bills. If you cannot we would also love prayers or postcards.

The link to the event info is here;

360 days

I don't feel like I am 'coping' or that this existence is 'living'. I do not resent my friends and family for being able to live; to get married and have a wedding, to get pregnant and have a/more child(ren), to have a savings and be able to travel, or go out for a dinner or to a movie...
But I wonder, I wonder if they even stop for a minute and know how lucky they are. Are you truly thankful and can you see all the wonders you have?

My problem is I cannot always let go of the pain at seeing people Live, and knowing that it will never be me.

360 days ago I ceased to be me.

I don't know what I am anymore.

Wednesday, October 20, 2010

Roll the Dice

Short entry for now, I will come back after a good nap to write some more. Have been fairly busy the last few days getting events lined up, things timed right, errands done, 5 loads of laundry wash, dried, and I folded every.gorram.bit.
Lots of stuff. I'm a little behind on my written correspondence but I will be doing that shortly. It's important to me not only to keep in touch with a few people and start sending out my thank you notes from birthday cards, but I have a friend who lives now completely across the country. And I really consider her a friend. And I miss her a lot, and the conversations we had- she's brilliant- and I really just want the time to pass by so I can see her and hear about all the wonderful and great things she's been up to. So I've tried really hard to send her a card almost weekly. And I've lapsed a little, so I am going to make myself do one tonight.
Speaking of, I've been thinking and reflecting on my birthday, and the various anniversaries around it. Not many outside my family know but my grandfather (Saba) whom I was very close with shared my birthday. I was a bit early- maybe two weeks- and I like to think I just really wanted to 'crash' his party and share it as well. It certainly gave me a bonding point with him that aches every year as well.
Wash is trying very hard to do something good and nice for me. I know this. I wish for myself to be able to let issues go so I can enjoy and be thankful for his effort and work and not just fear the whole episode. Irrational fears are the worst, as I base so much of myself in reality and the literal.
It's hard to write of the daily pain of striving for some status quo, some level of 'stability' in a world where there is total certainty of a short (hopefully not too painful) death around the corner. It is hard to convey to others that when eventually he goes a part of me will die too. Some days I fear it is too big to keep going after. If a Time Lord can't really live without two hearts, can I survive when I lose half of my one? Questions, always questions. Does the madness spread inwards until I destroy myself, or will it fan out burning out all of humanity, the world?
These are things I do not know. These are hypotheses that may not even come to pass. But the ideas are still there none the less. They stay swimming in my head, submerged in low water floating and treading until the still of the night, or a calm moment when they chose to rear up and bite into my small amount of self security.
How does one describe that the worst day of their life is every single day since then- that the day replays over and over never changing always that idea of fear, that dry and almost salty rusty taste in the mouth with the memories of the choices and the consequences?
Does English even have a word for that?

Leaving that aside for a moment, we have a friend in town this week and it's kickass. We actually need to show her that one. She came in for a business meeting but is seeing and visiting us in the time in between. It's beyond wonderful really to have someone to talk to, to listen to. She's someone who's been personally effected by a loss to brain cancer, so she can really appreciate the unique situation it places on people. It's a sad feeling to have to realize and know that perhaps without a death we would not really know of each other, but there is good in that as well to know that friendship and help, and positive things have come of the end of a life.
It's great to talk and play and see other total geeks out there like us. Honestly, I thought watching Caprica last night was even better with another friend on the couch.
So, I have her for a few more days, then Wash gets his benefit, the weekend ends and it's my birthday.

I will get back to that idea later.

Monday, October 18, 2010

Excellent. Wash is off at a long doctor visit and I have the whole place to myself for another hour.

Now I can do all the crying I've been holding in for a day.

I wish I knew how to let other people's hatred go.

Celebrity, Sex, and Fascism.

I'm really too saddened and depressed to talk about much.

Right now with very few exceptions I am holding a lot of anger and rage at anyone who is healthy, older than 26, has a child, has a partner, has a job, has any kind of future. Who has a completely filling and 'done' life by 30?

I will never know what it is really like to be a man. I can imagine, but I don't really get it.

People who are not living with a young, dying person, or not living and caring for someone with a severe brain disorder/trauma/disease... they just don'

He doesn't have time. Or a child. Or a job, or much of a long term future at all. We can barely afford chemo and medicines and co-pays, so he really doesn't have much material to hang on to.
All he has are words and memories.

And he's had yet another day of that robbed. As have I.

I'm just sad and tired of it all. I know there are good people out there in the world, but why do the awful humans have to be so loud?

Sunday, October 17, 2010

Saturday, October 9, 2010


Happy Birthday John.

This year may your dream come true. Hug someone today. Tell every human they are loved and wanted.

Imagine Peace.

Tuesday, October 5, 2010

Wash wrote an article!

Another round of "Meet The Aspie"

Been having some issues lately. And, as this is here not only for me, but for others in my situation I will be truthful and elaborate.

My birthday is coming up at the end of this month. It will mark the one year anniversary of Wash's day of Seizures and his hospital stay, tumour discovery, and brain surgery. Not a good day for me and certainly not the best memory to have and hold to of my birthday.
So, for me there is great trepidation coming up to celebrate or even mark it again.
This caused some contention the other day when Wash was trying to ask me to decide or give input on what I wanted to do.
"It would be an amusing coincidence for it to happen to me again. Do you really think that's going to happen?"

Well, I have no idea. Maybe. I never thought he would have a seizure in the first place, or get a brain tumor, or have it be cancer, or that it was end stage. To me, suspecting that is irrational. What's not is to understand that if it can happen once, it might again, and if the odds were frakking millions to one for the first time, it could easily happen again.

This is the way my brain works. I look for patterns, repetitions in the world and words and actions. I read statistics, but look at the larger figure as well. It seems to other people- Wash has told me- that it is effortless and intuitive but I am not. I do not read minds anymore than I was really the "witch" kids used to call me in elementary school. It's just that there are always 3 or 6 different trains of thought constantly going in my brain to look for the patterns everywhere, of all behaviours. It seems to be intuitive because my brain is loud to me, but very silent to others. It happens so fast it seems suspicious.
Sometimes when we are watching a new episode of a show- really any show I've seen a whole season of- or a movie written by someone who's other work I am familiar with I will feed in the dialog of the characters before the speak. Correctly.
Do I "read the minds" of the writers? No. I just simple have an almost eidetic memory and a very cursed brain that reads the patterns of what has come before to predict the behaviour or conversation.

Sometimes this really pisses Wash off. I will finish his thoughts and he gives me a stink eye.

I wish I could stop it. It takes a lot of joy away from living when I spend all my time just thinking.

So, my birthday. The start of the autumn/winter holidays. I cannot control my fears. I sometimes give in to anxiety. But despite my love of the rational I am allowed as a human to feel things, to have these irrational and alien feelings. Last night was hard as for a few hours he just would not listen or respect my feelings. Some perhaps are irrational and just fueled by fears. But some are very very real with very very hard consequences, and it just made me so sad and angry to no end that he would not even listen to what I had to say.

We eventually did talk it out, but for me some times are just so hard. I am put in a situation I have not seen, heard, or read before. I do not know the appropriate responses always, or the next step, or how to deal. It's an entirely new situation for me and I really hate those. I know that part is my burden, but we as a couple have to work very hard to understand each other. Sometimes he just cannot fathom the disconnect for me, what comes to him so naturally and unconsciously for me with Aspies takes constant work and concentration. I have to think and process before every response and though I am fast at it, I have to literally think everything out, when he can just react.
I admire how easily he can feel emotions and think and speak all at once. I have to separate myself, pull up my rational part that tends to stay in control. The rational part is the part of Tashi that functions. The irrational breaks down and rocks. Or counts rice. Or cleans. For me it really is two parts that have to work to make a whole. To me it seems that other people, humans, can just be. Exist to both feel and think at the same time. Boggling.

First morning of chemo week and he survived. Hoping the nausea drugs are worth the $54/pill cost. I am thinking though from his slow pace and climbing nausea that he will be in bed for today and I will most likely be reading to him.
I am still figuring out what to do for my birthday.

Monday, October 4, 2010

Talk is cheap

Gorram you guys.
I have 6 of Wash's 9 chemo prescriptions picked up today. So far that's $4200 and change.
His new anti-emetic (the old one stopped working) costs $54 per pill.
And I get 2 pills (one day supply) at a time.

As if I had so much free time on chemo week to be able to visit the pharmacy for at least 6 days to pick up pills.

$54 a pill! That's to make sure he keeps down the $320/pill chemo meds he takes.

Nope, no issue at ALL with Healthcare costs. (I am not referring to the R&D costs or the Generic/Name brand issues. That's another rant)

Quick survey- who here in the 22-29 age range has set aside $5000/month for Cancer related costs?
Ya know one year ago I didn't think I had to.

I actually had to say this today- "No honey we can't buy you cereal today. We don't get food stamps for two more days and I have to get your chemo meds today."

Is it disturbing that as an American I have to choose to feed my dying husband the food that helps him and keeps him happy and not sick, or put off getting his other medicine that keeps him from getting sick and dying?
I kinda think it is.

His age really frakked him over. And of course, getting a really rare and fatal type of cancer.

Dying of brain cancer is just so gorram unfair at 26, having to do it from well below poverty too... I thought we were a First World Country?
Where is his Right to Life, Liberty, and Pursuit of Property?
They've all been taken away.

I hate it so much. I wish I could do more for him. I wish I had more to do more for him. But I'm young too, and option less right now.

Friday, October 1, 2010

Updating the Carbon

It has been so NICE to just.... disconnect this week.
Wash and I have just spent a lot of time together. Reading and talking.
It was disconcerting at first, but quite honestly as much as I did miss talking to a few people the time he and I have had together from this was just so wonderful. We read a lot to each other. And had good time for good talks. About possible futures and ends. Decisions and ideas and wishes. All those things people who have the luxury of time and health to not worry about or want to speak of. What they forget and choose not to celebrate we tried to remember and enjoy. For some parts it felt like we were dating again. It was wonderful to be able to make him laugh that much, to giggle, to enjoy hearing him expound on Jupiter and its orbit this week or my passion about learning of ethics and religion. I don't mean to "bogart" him per se, but I do not regret time spent with him and even some time apart. He has his own projects to work on this month.

Now, I do also have news. I got accepted into a small local History and Ethics class (2 credit hours) but this is the first time since before Wash's diagnosis that I've thought or tried to go back to school. I am scared shitless but also excited. It's been ages since I've been in a learning environment like that. I cannot wait to be learning, reading, writing, discussing. I have homework again, and assigned readings and work. I love that part of school. I am nervous to be around students again though. People my age seem so different to me now, and I suppose I am quite different from them. My identity has changed and not really settled in yet, so when asked to speak about myself or who I am, it's hard to properly articulate myself. Since it is a small class though I am hoping to mitigate those issues.

Wash starts chemo again on Mon and there's now 25 days to go until my birthday and the 1 year anniversary of his giant gran-mal seizure that led to the discovery of his tumour and cancer.
He cannot understand why I am nervous or worried about any type of "party" or the like this year.
Is it irrational to have a fear of him getting ill again? Perhaps. But then again him getting stage 4 GBM at age 25 was pretty gorram irrational as well.
I didn't celebrate about 10 years worth of birthdays. I kept having bad accidents occur around and on my birthday so I decided if I did not celebrate or mark the occasion nothing bad would take place. Oh how young and naive. Bad shit happened. It will again at some point.
I don't even know what material things I'd want- there's one new book out I ACHE for. C'est tout. My basic *needs* are mostly met. The rest is what?- want of material things? Who has time for that? I do not, so I don't spend much time thinking about wanting things- just always and forever more time.
And the other thing I want and cannot have- a child with him.

I've been allowed/encouraged by my health insurance (now with even MORE cuts! yay!) that I can go down to once a week PT for my knee. Honestly and actually it is getting better, but I quite resent the insurance getting to tell me when to stop rather than say my doctor or physical therapist.
I blame Jan Brewer and Joe Arpaio directly for this. Fighting, mismanagement, and flat out robbery of State funds that takes care directly from Wash, me, and other NO INCOME families and spends it on lawsuits, or dress suits, or Honduran Holidays.
I think one of the few things I have to keep me going and alive after Wash eventually goes will be my suit against the State of Arizona and its players in my husband's death.
The debator in me, the State ranking Speechie, the Aspie who studies law in me... they are ripping for a fight, and gorram it, it will be a doozy of one.

But enough of the shite of the world. That's why I took some time off. Focus on the love and care I still have sitting right next to me.

Still here and still fighting y'all.

OH! And of note, to the no longer Anonymous reader who has been shit-talking me? Reading comprehension is your friend. I laugh at the blatant and childish lies being passed around. I will just sit back and let my other readers armchair guess what is wrong in the psychology of someone who lies about a terminal cancer patient.

Tuesday, September 28, 2010

Busy Backson

Wash had his MRI check this morning.

Clean. No new tumor.
And his WBC is still good enough for him to start chemo again tomorrow.

So, I'm taking a little interwebs break right now to be with him and to think.

I'll be back and around.

Sunday, September 26, 2010

Friday, September 24, 2010

Catching Up

So, let me see; where did I leave off?

Oh yes. Not certain if it's seasonal or whatnot, but my asthma has been kicking my ass the last couple of days. Can't breathe, sleep, run, stand, move... basically suckage.
And in between that still trying to be responsible for everything.
Wash has been helping as he can. He did a load of dishes by himself today.

I am beyond tired, but I honestly feel like if I truly gave into it I would never wake up. Wash is worried I have clinical exhaustion now. Maybe? Even so, there's nothing to be done about it. I still have to take care of him as long as he's alive.

(3 hour gap)
Sorry about that. We had our AC blow out today. Friday afternoon of course. One of the last 100F+ days we had! Joy!
Still waiting for the repairmen to come. Hopefully less than an hour now.

Trying so gorram hard to keep Wash happy and cool and not dead.

My life? Long moments of monotony and small moments of pure love and every now and then a complete disaster thrown in.
And yes. Wash can't regulate his body temp. When my bedroom is more than 90F it literally poses a threat to his life.
Such it is living in a 30+ year old place. No insulation so it gets HOT and fast here.

I've had at least 3 asthma attacks in the last 4 hours. This does not bode well as a calm or good day for me.

Want some perspective? Be me for a week.

I do have a lot to update, and I hope to do that soon.

Right now I'm having asthma complications so doing much of anything is horrid.

For the meantime, here's some fun pics of my summer watermelon, Bill Murrayelon.

Wednesday, September 22, 2010

time out

I am sick.

It sucks balls.

Eventually the fever will go away and I will be coherent.

Monday, September 20, 2010

20 sept

Seat Filler

Working on a longer post for this evening about the weekend, the ups and downs.

For now though, I present, Bill Murrayelon!
He weighed 6lbs even and was lovely! Had a pink-yellow flesh and a mild sweet taste, but a lovely watermelon. And my pride. More pics to come.

Friday, September 17, 2010

Thursday, September 16, 2010

Wednesday, September 15, 2010


Anyone know how to drape a sari?
Or a good how-to online? The few I've found just confuse me- I keep trying to plait it like I would a traditional kilt.

Seems I have about 2 days to learn; Wash and I are going to CSTS here- at last. We did our own version back in June- for Joss' birthday, but since he's still alive in Sept we're going to the big show.
Though I may make him mask up.

Much thanks!

Tuesday, September 14, 2010

Turn turn turn

For every bad day there are as many good ones.

I've been trying to do the best to keep his spirits up lately. He's recovering from chemo so that normally knocks him down to start with, and he's fighting an infection now to boot. As of now nothing serious, but I have to hope and get him to work to keep it that way.

He's been spending a lot of time in bed because of it. So, we've had time together. Books to read, games to play, movies to watch. In between all that a bunch of doctor visits and pharmacy consultations. I did send our Pharm another thank you note though. They really work hard to help me manage all his pills and medications so that they work and I don't mess it up.

He had some good moments in therapy today, perhaps the start of progress. I can hope. For now, there are a few new tools to try out to see if his coping and learning skills can improve.

I've been thinking lately of what my life might seem like to you, dear reader. Chaotic? Depressing? Faithful? Morbidly entertaining?
Perhaps it is a mixture of it all.

The best way I can think of to explain things is that to me I now see things and time as closer to being in a movie theatre. The house lights are down, the screen begins to glow, and the scary previews for the halloween period come on. You know the movie will start soon, but you have no real idea when, no control over it, and there is a new story being thrust in your face to watch and experience. That's a mild analogy.

There are moments of great excitement, worry, stress, fear, relief. There are boundless times where he is just asleep and I can only watch, soaking up the time and memory of him. Life changes goals and time for us, focusing not on a future goal or idea, but instead the moments of life currently passing by, as it's all the guarantee we have. Focus changes. Time still passes, never ceasing.

The bad days are days when I cannot remember the good outweighs the bad. Those days I fear and hate. I hold myself to be perfect all the time- for his sake?- and I cannot keep up. No one really can, but I cannot stop myself. I grieve that I do not have the knowledge or power to stop this, to cure this. I cannot take it away.

But I can write and record and remember the laughs and smiles of him today. The cheer on his face at seeing his friend. The satisfied look of feeling no serious pain and just enjoying breathing and singing. I can remember that.

My life is both all that it was, and nothing at all the same.
I have to write my own rules for this. There's really very little precedent.

I can hope this was more insightful than rambling.

Monday, September 13, 2010


Quick poll here;

For those of you in long term relationships - married, SO, BF/GF- do you still hold hands? If so, are there specific times?
Do you still cuddle together?
Do you share a bed/bedroom?

Do you remember everyday that it might be the last time you have with your loved one?
Do you treat them like it is their last day?

Just some curious questions.

Friday, September 10, 2010


I was asked a few days ago about the History of why I call Kevin "Wash".

Back when we first went out the first movie we saw together was "Serenity". This was back in 08 and we were/are huge Joss fans, so it made sense to spend our date on the couch enjoying something.
Over the next few weeks as we talked and dated we went through and watched the whole season of Firefly. Between the two of us we have 2 copies of Firefly and at least 3 of Serenity.
I also own all of Buffy TVS so we made use of that as well. It was one of those instant we can talk about the characters and morals for hours relationships.

I knew Can't Stop The Serenity day was coming up, and Kevin had at the start of summer asked that if we were still seeing each other at the end would I go to the screening with him?
He had no idea, but for 3 weeks in June I was working and knitting.... completing my very first project ever. He gave me motivation. I knit him a Jayne cap. It was literally one of the best gifts I have ever given, and I cannot forget his smile when he got it. Something like the photo here.

It was so hard to decide who to go as for the showing. There was really no question that we'd be dressing up / going as the characters, but which?
We ended up trying to do something a bit creative; I dressed as River- the flowy dress, loose hair, kickass boots, crazy eye...
Kevin put on his best suit and borrowed a pair of blue nitrile gloves from me.
Two by two.... hands of blue....

I wouldn't say our love of Joss Whedon and his works is what brought us together, but I will say it has created a bonding point so powerful that I can know with absolute certainty that if he is having a bad day, I can put on Dr Horrible's Sing A Long Blog, Once More With Feeling, Serenity... and he will be smiling with me by the end.

The real story behind Wash? Who's the character with the biggest heart? Some might argue Kaylee on that crew, but my guy is the same wonderful type of man, has the character that he will still sneak off to go take on the danger because he cares about me. He protects, and loves, and keeps everyone together. He can tame me, and shows me the good side of humans.
He made this video after we got engaged and right before we moved in together.
He can find the humor in anything.

My Wash says, "Gorram Tashi! I thought you'd seen the movie! His script ends on page 87! My script is shorter than everyone else's now too! Guys? Page 87!"

We also are the really fancouple types that his beautiful huge 3'x4' cast autographed Serenity poster is in our bedroom. Sadly I don't have the proper frame for it, but he loves it and loves to tell the story of how he won the poster from right under Harlon Ellison at the con a few years back.

That's why he's my Washburne.

Where do we go from here?

I had a few posts planned out, a couple announcement-y type things to say.

frak it.

Today I am feeling rather worthless. Valueless. Severe self hate.

From a biological standpoint, I purely fail. I should just take myself out of the system, using up resources that could be allocated to those who can successfully breed. Not me.

From a culture specific socio standpoint, I also fail.
My value placed on me from birth up by my family was to continue the name, pass the genes, raise kids, propagate the cycle. And for a long while, I didn't want to. Then I fell in love and got married to a man I thought would be a wonderful father. We wanted to enjoy each other, then expand as a family. We thought we had the time to wait.
Cruel joke.

Right now I care for Wash. 24 hour a day everyday. Dear, reader, this is something I've actually been doing since June 2009. With no breaks, time off, holidays... Since Nov of 2009 I've been caring for him as a husband and cancer patient too. I don't get a 'weekend'.

I'm not able to create future taxpayers. I'm not able to contribute now to taxes, as I don't get paid for the work I do. No one considers the person keeping someone alive to be "work" unless they're not related it seems. I cost money. Merely to exist.

With the medical debt and trashed credit score from Wash's incidents when he had the tumor I cannot afford to go back to school to finish my degree- or any. So, that cuts out education. I now have the start of a nice looooong gap in my work resume which I'm sure will be helpful if I ever can go back and do some work some where. I doubt I will ever get a high enough clearance to do some of the other work I once dreamed of.

The family that I tried to start with him will die with him. And there's really no one else. Most of my family, it's as if we don't really exist.

By opening up to the idea of a love; I've lost half of my heart to cancer. Attempting to succeed at "life"- to have something average and at least something good, has just led to utter failure.

Sometimes I am so jealous of him. To have no idea what it is like to have your entire value put not on your mind or heart, but honestly, from just between your legs.

If I was living in certain parts of India or Iran there'd be a 1 in 20 chance Wash's family or even my own would burn me to death after he died. Not useful anymore. It happens a lot more often than I think a lot of Westerners are aware. And it's horrid.

Rational truth is not always compassionate.
The pondering I have is this, every human life has the possibility of life changing value... but for how long?
Does a time ever come when we can admit to ourselves there is no more use in life? Do humans?When one consciously looks back and forwards at their situation and societal surroundings and says, "I have done my part, made my mark, now it's time to go."

I wonder.
Could someone decided when they wanted to go and just will their heart to stop? Physiologically- perhaps?

How does one determine worth if every marker you fail at?

I don't have a 'happy place'.

Thursday, September 9, 2010

Mad World

The house is fairly quiet.

Both cats are still asleep. Wash has taken his pills, taken his anti-emetic and gone back to sleep.

And here I sit down to type. It's been a bit since I've really opened up and not just passed along the inane details of my day to day life.

So, what's up, Tashi? as the saying goes.

The standard family issues. We have someone close to us I will give the moniker "G". "G" has known me for years and years, and knew Wash pretty much from the start. G has not had an easy life either, and when in the past few years he has needed something- an ear, a meal, a ride or 7, groceries, movies... you know the stuff you do for a good friend without a moment's hesitation because ... that's what people do, right?
Well, not G. And now I am not sure if perhaps I have misunderstood someone so close to me, or perhaps they are normal and in fact my Aspie brain is doing more than needed.
See, for me anytime G needed something that I could provide I would. Never a tit-for-tat, quid pro quo, it just was. To me, a close friendship- like a sibling relationship- is something that you love the person in a way and treat them as you want to be loved.
Am I incorrect on that? I tend to take things very literally in my life, and I do recall from age 3 or so on being told to "always treat all people like you want to be treated, and love like you want to be loved".
That's me.

I had one friend years ago back in high school call me "Loyal". I took this as a compliment until he amended himself- "It's not Tash. On you loyalty is like a dog, you keep giving it to people who don't deserve it or abuse you for it. On you it hurts."
I have remembered and held onto that comment for a long time. I have to think sometimes it is true. Is that normal? I don't always have good models to compare and go from on behaviour.

Back to the story. So, earlier this week Wash apparently (I don't monitor his every email or phone conversation) asked for some help. Like, I *need* something can you do it type, a request. Not a demand, and not a "for trade" (help me move, I'll get you pizza) just a request. I assume this is something that Wash thought G would be able to help him with. Now, I am not sure if perhaps Wash was unclear (possible) or if G was just being a dick (possible) but there is some strife and unbidden anger in our house.

The thing about me is that I do not ask anything of anyone that I would not do myself if they refused. I will ask for help, but my understanding of my self is that if they fail it must be something I am able to then accomplish. This is my wiring and has always been.
So, I have never asked any favours of G that I was not willing to do either myself, or right back for him. I assume the same of Wash. Perhaps not.

Here is the issue, G does not feel the need, want, desire to help at all if it is not reciprocated in some way to him. "Why would I go out of my way to do something for Wash if it didn't benefit me at all?"

Alright. My issues with this. I have rarely refused to help G when requested, and usually there was a solid reason why. Wash has been the same and has pitched in a few times when needed. Now, granted Wash was asking for help. But he is G's friend too. And I can understand a friend a time or two saying no. This was not by means an extravagant request- when I asked Wash I learned it was something in fact I have done in the past for G on more than several occasions. So I am just genuinely confused.

Why wouldn't you go "out of your way" to do something for a good friend? Why wouldn't you "go out of your way" for a fracking terminal cancer patient? Trust me G, he has much less time than you.

I just simply do not.get. humans. No matter how much I read about them or history, or watch and observe guided and unmannered behaviour I don't get it.
I guess that's why I never flinched around the murdered and other victims- the capacity for violence and savagery and selfishness of humans is unsurprising, but I cannot say I understand it.

I don't.

I simple don't.

Now, I am not equating murder with refusing to help Wash, let me be clear. But in the same way I cannot understand how a human can murder another I cannot understand how one person can seem to and say they care about someone and literally make it a conditional and not giving type of friendship.

Do you have scorn for other humans Tashi? Honestly, yes. Not all, but many more than perhaps I had imagined as a child. Funny, sad, miserable, and sometimes, vary rarely, absolutely brilliant and limitless- humans.

Wednesday, September 8, 2010

A good idea


At least I got almost 7 hours of sleep last night...

Chemo week has hit.

Today, here is my "fun";

*Take Wash to dr appointment. This requires getting him up, out of bed, showered, dressed, into the car, and up into dr office.
*Grocery shopping- need food! Least for him.
*Have to cook matzoh ball soup for dinner
*Meet up with a friend who has some stuff for us
*Possible bank run
*Driving out of my way to Southwest Laveen to see/yell at my brother. Funny how every time he moves more than 15 miles away we are always required to come to him, yet when he lived 15 mins away from me before, I still had to go see him. I can tell how much/little he values me or my time. Or Wash's...
(rant about "help" another time)
*Drive into Mesa to grab/store some things for a friend who is moving this week
*Drive to North central Phx for Rosh Hashshonna dinner.
*Monitor Wash through this
*In a car with no air conditioning
*Make several follow up phone calls

I so already want a nap.

Hey, are you on the Facebook? (Not into arguments over its usefulness as a tool, but I do long and miss the days it was for college students and alumni only. Le sigh)
Then check out the awesome fan page Wash's Frat set up for him!
It's called the Paper Crane Project

Sunday, September 5, 2010

Life in Lalawood

If this was a Hollywood movie we would be coming up on the climax and "good beats evil" resolution.

If this was a movie I could feel confident that Wash would get sicker, then make a marvelous and miraculous recovery.

If this was a movie someone famous would be alerted to Wash's plight (and mine) and step in to help.

If this was a TV show we would somehow be able to start our own foundation and maybe "Find a Cure" (TM).

If this was a Hollywood movie I would not have miscarried and Wash would have a son to "live for".

If this were a Hollywood movie his brother would be a match for an obscure and experimental treatment that *gasp* works and cures Wash!

If this was a Hollywood movie Wash and I would be on a plane with a fantastic orchestral background testifying before Congress about how horridly the dying are treated in America and the Government and Health Care imposed poverty while a 26 year old man who just started his life now dies destitute.

If this was a Hollywood movie, we would have the perfect ending.

But this is not a Hollywood movie. This is not a Lifetime Made-For-TV-Movie, or even a televised special.

This is real life.
This is my life, and I am the one who faces the daily hardships, the daily bad news, the daily needs to hold the will to survive.

Sometimes... sometimes when I go to sleep I ask that it turns out it is a movie.

Tragedies are entertainment..... until it's your own life and not fiction.