Friday, July 29, 2011


We did lunch today with Wash's parents and his mum took us to the local aquarium for his birthday present! It was quite a lot of fun. I'll post pics and a video later.

I did end up cleaning my closet yesterday. At least the clothes section of it. Cleaned all my new clothes and ended up filling 5 bags of my old or unworn clothes to go donate. Took me more like 90 mins than 20 to do, but I feel great about it and it's clean and organized.

Wash also got a new phone (still a 'dumb phone') that he can actually make calls on and has a battery life- and while his old one was off for a mere hour I ended up getting a call from a very upset gal at the billing office at Wash's neuro-oncologist.
Wash's insurance is refusing to pay for his next MRI again.
And again, we are informed of this literally the business day before. Got called at 3pm on Fri and his appointment was going to be first thing Mon morning for his MRI and office visit.
I talked to the billing department on like, Tues of this week to confirm his MRI WAS paid for; and I was assured it was. See, after they pulled this last time, I was trying to head things off.
Today, at 3pm (and of course no one returned my messages by the time I got home at 4) they told me that the insurance is saying a different level of coverage is needed and he qualifies for a different insurance to cover it, so his actual insurance AHCCCS isn't paying.

My parents and Wash's parents are coming over to our place for dinner tonight. I'm excited. We don't get to host often, so for me it's special. Doing it up Shabbos way, making some good matzoh ball soup and salad and hot bread... yum.

Thursday, July 28, 2011

Rescue who?

An interesting day so far for sure.

Woke up to go out today with my mum while Wash spent some time visiting and catching up with his parents.

We were out for around 4 hours, and I managed to find some new cute things to wear. If anything though it is a reminder for me to really try to get back into as much shape as I can. Spending as long on as many anti-depressants as I was did not do me any good- in fact I almost marvel that I haven't put on 50 lbs, just 25-30.
I picked up some good solid colours though so they will work with my summer outfits, they will fit nicely with an Arizona fall and I can use them with my winter stuff from 2 years ago so it all works.

Now I just have to take the time and energy to clean out my closet. This will in actuality only take perhaps an hour, I'm just always finding excuses not to. Time to change. I try to find/spend 20 mins every day cleaning just a small portion of the house, but a little bit every day will eventually help me get back in control. With Wash, things move and get changed around. It's always a catch up game with cleaning now.

Wash spent the time with his parents this morning, he's asleep now. Tired himself out real well. 'I just need a nap." "I just need to lie down, I'll be fine." "I didn't push myself...*yawn*"
I'll wake him by 6pm if he isn't up by then. Needing a 2 hour or longer nap though, yea, he pushed himself too hard. I can see it, even if he is not ready to admit it.

We had my parents come with us to the most recent Brain Tumor Support Group. I think it made a lot of difference for Wash to see family there for him, and it made me feel -supported- for lack of any other descriptor. I feel better as well knowing they are trying to learn, and trying to really understand what our life is like every day, not just once a week. It is a really good step for all of us and my hope is we are brought closer together as a family with knowledge and acceptance not hidden and far flung from fear.

We also finally finished the story for our nephew Yo-Chan and got his package sent off to Japan. (with my mum and her stuff). We've been collecting small things for literally about 4 months now for him and wanted to write a small story to explain the meaning behind giving him my smushed penny collection. It's 20 years worth of collection from me - but it's going to my nephew and I am hopeful as well that it might make him smile or provide some inspiration in his life. He's 2 1/2 now and they only grow up faster and faster, this I know.

My mum also managed to track down the two nail polish colours I have fallen in love with this year and bough me 2 bottles. I love having painted toe-nails, it helps me feel like I don't have giant furry hobbit feet when they are painted. It's a small thing, but I am learning that sometimes just doing the small thing for myself can help keep me sane. Taking care of an adult who varies in mental age from 2-7 to 27 is hard. Sometimes he can reason about as well as a toddler, sometimes he can talk/build things that can be marveled over. His short term memory issues tend to do him in more than anything else.

Wash's parents will be around for a few more days. We have a few plans and the rest I think will most likely be just trying to spend time with Wash- any maybe me? I know they want to take Wash (and me) to the little Sea Life aquarium that opened near us- as Wash's birthday present. We might also catch some movies or perhaps a day trip.

Wash and I right now, we are in a period of arrested development. We can't mature at the same rate as the others in our age group. Nor do we have the life experience or years under us to be at the level of those who are elderly and retired/hospiced. There are many things we both want to do which just are not possible with cancer. We both are on a journey of meaning and purpose, though different for each of us. His journey ends at his death, but mine should go on. What do we do in the now? What do we do to prepare for the future? How do you look at a 'future' when you measure your lifespan in days/possible months?

Wash says I should write. I should compose my words into a book- perhaps his story, our story. I've told him though, I don't think I could write a book without an ending. Our story is not at an end yet, it is not over.
A book sits. A book ages. Books though, do not change.
Wash and I still change. How do I write a story when the people, the characters, and the plot might keep changing?

Every day that he wakes up we both have to answer the unspoken question- 'How are you going to live until you die?'

Moments of pain

Love the man, hate the brain cancer. I am now suspended from checking anything out at my library because Wash "returned" a book that as of last night was still on his shelf. Sigh. Frakkin' cancer.

I have lost my privilege of reading. I cannot afford to buy books anymore. The library was all I had left.

I don't think it's that unreasonable to ask Wash to fix my account, since it was his insistence he returned the book (he didn't) that really has led to the charge and the suspension of my account.

Going errand running with my mum, while Wash catches up with his parents this morning.

Tuesday, July 26, 2011

No power in the 'Verse can stop me.... from getting Pie

Rock Springs Cafe, located by Black Canyon City about 50 miles to the North of Pho-town.
They have the best pies in the Universe. Fuck the world, EVERYWHERE.

Picked up two pies today; one for my step-dad's birthday and one for Wash's (they are 3 days apart). We're eating 'em early at the family dinner tomorrow when Wash's parents get into town.

This is the place where we got our pies for our wedding. If we ever have a reception or a public ceremony or some such it will be where our next pies come from.



Monday, July 25, 2011


Yes Wash has cancer.

No he can't use the "card" this week when he has been putting off his (one of a handful) chore for five days.

I - gasp!- insisted he do his share and clean the dishes.

Must be so terrible to live with me and have his meals bought and prepared and chauffeured everywhere.

/I don't think he's really complaining.

-It's nothing personal I just have not- I've been busy and lazy with my spare free time and have not responded to some of my emails. I feel terrible about this, but not enough to write back yet. I hope to get some done tomorrow with some thank you notes.

Sunday, July 24, 2011

At last.

It is pouring rain. Nice summer monsoon, with quite impressive lighting.

This is pretty near the best thing all day.

-Aside from the chocolate croissants I made this morning for breakfast.

Friday, July 22, 2011

Two Princes

I was expecting it a little closer to August, but today I celebrate a little bit- in the last year (Aug 2010-now) Wash and I have finally gotten a little of the publicity necessary to survive in Arizona. After he was first refused insurance and then I was as well, it took power and public attention before the insurance company would comply.

I still think that is wrong. I still think health care should be an absolute human right. Why? Because it's frakkin' 2011 already and we are NOT living in a century where one group of humans is "less" than another.
We shouldn't be.

I started this blog back around Nov/Dec of 2009- right after Wash was home from the hospital and when he had started his treatment for GBM. I wanted a place for me- a place to record with all honesty the good, the bad, and the sad that we have to face. When your life is measured in days, everything counts, even the 'bad' days. I wanted to write so that I and Wash could have these memories. So they could be shared and learned from.

So that if the worst happened for another couple newly married and not even 30 they could see that someone had been there and they were not alone.

I have learned with brain cancer, it is such an important feeling, to not feel alone. To feel comforted or supported- without that it is a challenge to find a reason to go on living.

Thank you truly dear Readers- for all 75,003 (Wash wanted to 'make sure' this morning) of you who have stopped by to hear even a part of Wash's (and mine?) story.
Thank you for the comments. Even the bad ones where some imply that Wash did "something" to get/deserve his cancer, thank you. I hope for those it reflects more on the people than an actual real belief that Wash deserves to die, but I still thank all of you who have come by. Thank every one of you who has sent Wash a postcard- he has a book going now of them. Thank you for every person who has donated to us; either with money, time, or by folding cranes last year. I literally could not keep him alive without all of the help.

Wash and I plan on continuing this. There will still be hard days to come, and I do truly hope more days with happy surprises in them too.

Always, thank you Dear Reader. Thank you for helping me.
Thank you for validating my (young? wise?) belief that people are inherently good and kind.
If I truly did not believe it, I don't think I could live on this planet anymore.


Next week will be a busy one for sure. Wash has some follow-up doctors and his standard pre MRI blood series to get done. I also have a 'follow up' to be scheduled this week which hopefully will bring me some good medical news and give me a solid (no, I want no) answer on my possible surgery coming up.
Wash also is doing his grief support, which I can hope might actually help a bit. He got very worked up last week and came to me and said he was ready to get his will down and notarized... and then I'm fairly sure he's now either forgotten that or it get's pushed to his "I'm not dealing with/ready to die so I will forget anything related to my demise" file. This is a pattern with him, part of it does relate to his brain tumor/surgery and how his brain was affected, but part of it comes I believe from his just refusal to actually DEAL with the issues that come from being almost 27 an dying. No, it's not a good or happy situation, but I'd rather he accept the fatality of his cancer so he can ENJOY the (years, fingers crossed) he has left. He can't do that until he accepts his cancer, and really, that's the hard part.
It certainly does not help when some of Wash's close people suggest (well intentioned?) that his giant ass tumor was really a "mistake". No, I'm fairly sure the hospital would make gorram sure before they sunk a million dollars of care onto him.

Some of Wash's xxxxxxx are coming by. I have/had no issue with this. Apparently I've scared xxxxxx so badly by 'refusing' to let Wash see xxxxxx that they don't feel they could even mention this to me personally. (Never refused. Times when I said, 'He's sick he can't do that, no he has cancer, you can't do that...) This caused HUGE amounts of drama this week for me. I don't want to get into it too much here, but really people?
What is up with me having to be more mature than people 3 times my age?!

Apparently I have to be 'patient', 'calm', 'mature', 'forgiving'.
I thought I had done all this already. I thought since I had spoken to xxxxxxx and no one said a gorram word to me everything was hunky-dory. Apparently not.

So, next week will bring... stress for sure. And maybe some adult behaviour where people would just talk to each other instead of playing the passive-aggressive game.

My wish for the next month? A long term goal for Wash to strive to live for. Help paying the $285.67 utility bill (gorram A/C costs- medically mandatory for Wash, but I still have to pay it all out of pocket!). A chance to make some soup/stew on a cooler day. Making more bread. Reading. Raising up some fry (6-9 baby fry in the little tank!!) and me mentally preparing for the students to come back into my city.
Speaking of- I have to share this. If you come across a photo on the Facebook of two teenage girls literally playing INSIDE a shopping cart of a CVS with a frowny-faced Tashi in the background....
Yes I yelled at them. They were acting like 2 year olds playing in a cart made to hold- 2 year olds- and heading straight for the "break your arm lawsuit express" aisle. I said, "Girls! You are not a toddler, get out of that cart and act your age. You are going to hurt yourself or someone."
The CVS ladies behind the Pharm counter gave me a little cheer for this.

I hope we do keep getting your Readership as this continues. I think it is so important for other people to be aware of what a terminal illness in America can do to a family- on more than just a financial level. To see how he is affected, how we both are is important. To see that incurable fatal brain cancer is not something one can "pull a bootstrap" up on. To see that for those who are 25 when they get sick with a terminal illness are usually abandoned by the greater community- too old for Pediatrics but way too young for any "adult" social services. Wash might be a VERY rare case, but he is by no means the only one.

I want people to see our example and be motivated to CHANGE this world. To see the wrong, and want- and do- "right" it.

Wednesday, July 20, 2011

Anyone know how to contact Applebee's / media?

To whom it may concern at Applebee's management;

I am writing to inform you of an instance of above and beyond standard service at one of your restaurants.

On Wed July 13th my husband and I went to eat at our local Applebees (Store 909 E Broadway at Tempe, AZ) and we were just moved by how much your staff did for us. My husband is a young adult who has been fighting against a terminal brain cancer for about 20 months. The average life expectancy with this cancer is >3% after 18 months. Every day is obviously special, but last week we wanted to celebrate his being alive for 500 days with cancer.
A 3rd party called our local Applebees for us and spoke to the manager G N about our situation; fighting cancer for months with very little money or time to just celebrate. Your store stepped up and asked us to come in to enjoy a meal.

I wish to truly thank you all for giving us the chance to have a nice evening free of worry. We were able to talk, enjoy the company, and smile. Not only did the two managers come and introduce themselves to us, the waitstaff was quite attentive and the meal itself was absolutely pleasant. We had been told ahead of time that they would 'comp' us one meal and appetizer; and I had enough saved for the occasion that I was more than willing to pay for just one of us to eat out. Your staff decided they could do better, and they did.
The sweetest surprise came when the evening manager (Jeff) not only came over to congratulate my husband on being alive, but that our entire dinner was on the house.

I hope that this small note of appreciation can convey just how much it meant in our lives for that free meal. You have given the two of us a memory of a good time - a time away from the cancer that permeates every bit of our day.
Thank you so much for being truly a neighbourhood restaurant, it is something I will not forget.

Again, with all appreciation
Tashi Pratt-King
K 'Wash' Pratt-King

Sunday, July 17, 2011

Cooking channel OD

The last few days have been hard. When is it not? I'm not patient enough, that I know. I'm learning that steroids make me super crazy as well. I also do not sleep as I normally should.

So, let's fill in. The day after Wash celebrated living 500 days with GBM we heard that one of the people locally we know who also had GBM had passed away. He had made it about 600 days. That has certainly tempered things this week. Wash is also getting ready to do some personal work with a grief counselor coming up so he was very reactive this week as well.

It casts everything into such a harsh light. No matter how much I can celebrate, how much both of us can try to forget, it is in fact inevitable that his cancer will come back (and most likely kill him if he does not go for some reason before). It's running from the monster inside your cells. Impossible.

My dreams lately have been reflecting this as well; Wash is always dying in them or still has cancer, an recently I've even been having dreams of asthma attacks, which I wake up to a real one! My stresses are high this month; the government decided to take out Wash's MediCare payment but not actually pay his disability for this month. Things have to be juggled and balanced and begged on. Thankfully so far at least all his prescriptions have been coming back with no issues so far. Small break.

I have been thinking a lot this week. There was a point when I just filled too much with the horrid "what if's"... the one's where life is a bit more fair and happy things came to us. Such magic. Life I am learning, is quite unfair and cold-in that way there does seem to be an almost balance of the oppressed to those in power.

The fish are breeding. Basically caught us by surprise, but we have a baby tank now with a few little fry and there are plenty in the big tank either hiding or being eaten by the adult fish. I am amazed by being able to watch the eggs develop and then the fry hatch and finally begin to swim... I do hope that perhaps one or four will make it to an adult stage. It is a harsh reminder for me to watch though. I may and can attempt to intervene but really it is not down to me if the babies survive. A lot of it will just be... luck?

I can try to hope hard we still have some luck left. I am not ready yet to face what is to come. I'm not ready for his decline. I'm not ready to care for the love of my life who cannot remember who I am. I'm not ready to say good-bye. I don't want it now, I don't want it in 10 years, but I know that it will come sooner than that and far far sooner than I could ever be ready for. I still don't know yet how we get there. How we get to the place where we can say good-bye. How can I say that when I still want another 50 years to say 'Hi' and everything else to him? I don't want to be a widow before I'm 30. I can hope I won't be.

Life and death it is all around. Like the cancer, it is inescapable.

I have tried a different tactic this week though; when things got very painful I tried reaching out, tried to communicate some of it instead of keeping it in. I let my bad day just exist instead of trying to deny or hide it and it did seem to pass perhaps a little faster than before.

I am still tired, always, but perhaps a little more confident in the goodness and kindness of friends and the universe to be there for help.

Friday, July 15, 2011

Stop and Stare

Bad morning, bad life. Hate Aspies, hate my brain, hate the pain. Disgusted by my human emotions and the fact that I can't cope or dissociate myself today. My husband has terminal brain cancer. Today, I fucking hate cancer. Gorram no good rotten very bad day.

Nothing's going right. Or at least, if it is it just feels all wrong.

My brain just HURTS. Like sharp spikes in it.

I wish I could just put Tashi and her problems and everything in a little box and leave it.

Lost a fish this morning. Woke up too early. Bills and no money. Friend's leaving the country.

Today I am having a hard day coping. Today I just want us to be normal.

I don't want us to be poor. I don't want to be sick. I don't want my husband to have fucking goddamn brain cancer. I don't want to be a widow. I don't want to fight anymore.

I'm sick of being strong and responsible.

Not even an Aelphie-butt purring in my lap can help today.

No I am not together today. Today it is just too hard for me to ignore all the changes. 6 loads of laundry, fuck cancer I have to clean. Dishes Wash has been promising to do- left out so long I saw a roach last night. Trash should have been out days ago. I just don't know how to do EVERYTHING , be responsible for every fucking thing, and care for Tashi too. There is just nothing left.

I'm so tired and there's just nothing left in me but responsibility placed there by a tumor.

Fuck it all. I'm having an issue remembering why I even keep myself breathing.

Monday, July 11, 2011

"That's really enough Bay City Rollers, honey..."

-The above quote was from Wash by the by. Nothing to celebrating like blasting up some 'pipes!

A nice day for the two of us I'd like to think. Started off the day by giving Wash his empty bottle- 500 pills, 500 days alive since he returned home to me from the hospital. He was overwhelmed by this for a bit, still is I think. I'm not even sure I understand- I don't think anyone who hasn't faced a terminal brain tumor can know. I've tried to let him rest/relax as he could today, rather than trying to push some party on him right now. He does want to have some kind of celebration, some notable mark of his defying cancer and statistics and still being alive and conscious. I want him to have a party of some kind, I agree, it's something for him to mark and be proud of. He might not get a 30th birthday, but he can have a 500 day alive party.

I have insights to write on this, but that's a horse of a different colour. Perhaps it might be best to just re-read the first 100 days of my blog, a taste of comparison. Wash wants to do another stand up routine- I've posted the old one on my links, he is working with my help to write some new material - both adult content and some G-rated stuff.
So much has changed over 500 days, some things eerily and sadly the same. It is hard to conceptualize let alone communicate the way that facing death at 26 works. Days are I wonder how he can be so - solid. Not brave, I don't like that word. But solid, in that he knows of his eventual fate and he is coming to accept that. Accepting and trying to move past the knowledge so he can live and enjoy his every day. He grows even more attractive to me as person daily. I do admire him. I wish others saw it as I do.

Tomorrow I hit my halfway mark of the steroid course. I've already packed on 8 lbs of water etc. Sudden body changes make me quite uncomfortable Aspie wise as well as physical so it is hard for me to face more, knowing that right now my asthma won't even let me exercise to help get rid of my weight.
In 18 months of hard work- diet modification and daily exercise I lost literally 100 lbs. Since Wash has been since in this 500 days my own health has not improved; I've faced more and more asthma/breathing issues and even had an emergency gallbladder removal surgery last year. I might be facing another surgery in a month, I am working hard to not. I've also gained about 50 lbs back- I'm heavier than I have been since around 2007/2008. My knee has recovered but I just have not had the time or energy or mental will to get back into better shape. I want that to change.
The next few days will be more of me being a bit short and cranky. I need to figure out how to work out working out into my life again. Times and circumstances change so much.
My doctor also decided that the time has come for me to be on/have a home nebulizer which depresses me about the declination of my asthma, but does make me feel a bit happier that I won't have to go to the ER or Dr every month if I have another flare soon- which I guess is exactly what they think might happen.

We also worked on the tanks a bit- and I mean mostly me. A good cleaning to help the grunge and a filter change, and we added in some shells for the fishes to play in/with and a couple new Otos to help clean in the big tank. Wash still wants some blue danios so in a week or so I might call around to check. It does seem to help mentally having the fish, they do just get one into a calm state, quite memorizing.

Wash is doing dishes and cleaning cat boxes this week to help, and I'm probably going to be doing some laundry tonight. Even for the celebration of just being alive, one still has to live- and sadly, we're brokeass so we get to enjoy the chore parts as well as the "fun" stuff one sets out to do when they are dying. Like watching every- yes, every- episode of 'Star Trek' - maybe every series. We're on TNG now. I do admit to enjoying re-watching all the fun of the first season, and Wash is always indulgent of my own t.v. tastes, so I will do my best to not be snarky and enjoy it.

Speaking of brokeass- so I get a letter this past weekend informing me that due to "extreme budget issues" Social Sec/ MediCare will not be paid to us in July. (After my letter in June confirmed we would) However, they would still deduct Wash's new monthly payment from us, so he can keep his insurance going. *facepalm*
So the *only* source of money we have (aside from any donations by you all, or the emergency funds our parents drained to fix the car) is not coming this month.

Of course, this is the month I had like, 5-8 extra doctor visits, Wash had new docs/co-pays, and I got an ambi ride to the hospital. The month that having that money for 'medical need' is great.
Things will work out?

Right now I'm mostly scared of the unknown again- so few with GBM make it 500 days, let alone more...

I guess Wash can watch his TNG upstairs and I'll put in some Buffy TVS on the other tv- I have to ask,

Where do we go, from here?
Cheers! Wash has made it 500 Days with GBM Brain cancer, Beating odds with every day. Thank you for your support love and care:show he is not alone in this.

For the longest time

Trouble sleeping tonight. Think it's more than just my new steroids.

I keep thinking about some of the close friends I and we, used to have. People who have been in my life for 5, 8 years, more than a decade... just gone.

Moved on with their lives. Living and just leaving me an' Wash behind to, what?

Do they ever think of us? Of what we might be going through? Or knowing that I'm still a person, and a friend and I did- maybe do?- still care?

The human condition so confuses me. I wish it were easier to just shut it all out and sleep. It is not.

Midnight blues.

Saturday, July 9, 2011


Presented (Wash's account) of my most recent hospital escapades;

Early in the morning, about 3:30 I awoke to hear Tashi laboring in her breathing, her lungs closing off. I held her, my concern growing as her breathing became more difficult, and so we both agreed quickly that a hospital trip was in order, since previous visits to the Doctor had taught us not to wait when severe asthma attacks like this one occur. After her inhalers had failed to help, and knowing that the particulates in the air was critically high, I called 911.

I just focused on what needed doing, gathering together her clothes while the EMTs were on their way, quickly getting dressed myself. I got her downstairs and upright as the 911 operator had told me to do and made sure I had her list of current medications, while getting ready to probably head out to the local hospital. While evaluating Tashi, one of the half-dozen Techs went over her medical history with me, Then we loaded up into the ambulance, rolling to the hospital a couple blocks away, me having to calmly chit-chat with the driver, asking him how well our local hospital does for respiratory emergencies such as my wife’s. He assured me that they can handle these acute cases of asthma and they were growing in frequency with the season. No note of panic entered my brain, but I was able to move through the morning almost in a kind of zen trance. Tashi had described something similar when I was on my whirlwind medial trip around the discovery of my cancer.

A couple forms later we were both ensconced in an ER room, the nurse having just given her a heavy dose of steroids to bring down the inflammation. Slowly she started feel better, her breathing easier. So there was a little time to muse over our reversal of situations. In an even greater bit of irony, Tashi was being treated by the first doctor to see me, a Dr. DXXXXX.

I was pleased that I was able to meet this person who was the first in a long line of clinicians I met during my cancer treatment. Amusingly, he’s the one I don’t remember. He only knew I had a mass in my head, not the severity of the GBM I had dubbed “Arnie.” Turns out I was only the second GBM this man had seen in his career, and the first since his med school. He was also impressed that I was still alive and kicking, most of me intact. Probably something few medical professionals see; Tashi tells me I’m special.

The zen focus left me, leaving me feeling exhausted, and regretting not bringing a book. With a prescription and a ride from my mother-in-law, we made it back home to collapse into bed.

This just reminds me of that fragility of human life that we all possess. I think no one quite realizes what the term “slender thread” means until they face situations like ours. At least I passed this test that life has thrown at me. I’m hoping I can pass all of the ones fate has in store for me in the future.


-I remember bits off and on, more so after I got to the hospital, the EMTs and such was mostly a blur. I recall them asking me the same questions again and again because I didn't have enough breath to actually speak to answer them.

I wanted to add we did get to laugh a little bit, there was a kind nurse who spent some time after getting me stable and warm under a blanket who flirted it UP with one of the EMT guys. Very cute. A while later we hear the theme song to ER going off- turns out the ring tone the ER dept had set up for the upstairs /intake calling was the opening theme! We are old enough to really be able to laugh at that. I also recall trying to joke with one of the paras that my toes were just painted blue, not that I was that deprived of oxygen.

So aside from some mild insurance fuckery going on with coverage on my PCP for treating me, I'm doing a bit better. The pain in my lungs is gone and I'm not normal, but able to take bigger breaths and even cough/sneeze on my own. Have to mask up when I go outside for the next little bit, but thankfully a few rounds of nebulizing bronchodilators and a heavy dose of 9 days of steroids to look forward to and I'm home at least.

So today I went out (mask) for the one errand I had to do (hello bank/rent run!) and am pretty much housebound now. I made muffins this morning and gathered some books around me. Wash is mostly resting today like he did yesterday; this whole episode has worn on him perhaps just as much physically as it was for me.

-Ultimately good that I got the help and nothing more serious happened. Frak, because I did NOT need to deal with the financial issues from another hospital trip and more doctor visits and prescription costs. I'm thankful that my husband could just call a number and help me to stay alive the other night, but I hate that I'm now having to think about what I can sell to make sure the bills get paid for the next few weeks. I will just keep shouting 'til my lungs give out

*All Humans deserve certain Rights given to them upon birth

*No human is "illegal"- only capable of doing illegal acts

*Access to clean water is a Human Right

*Access to Health care based on prevention and need, not wealth

There are more but that's for a different post.

People who are ill do die. That's is undeniable. But I do not believe a person should die because they are too poor to get treated for an illness or emergency.

Friday, July 8, 2011

Quick thinking

Throwing some thankfulness out today for my husband.

'Cause he is the one who wakes up when I'm not able to breathe at night. 'Cause I have him to call 911 and keep me breathing til the EMS arrive. He holds my hand in the hospital. He reassures me. He can (with guidance) get paperwork for me done, so I can focus on just not being in pain and being able to breathe.

I love my man. Through the good and bad, the happy and scary moments he is there for me.

More later. I'm discharged now and home from hospital.

Tuesday, July 5, 2011

Ongoing Mission

Amazing dust storms this evening. I know this not just from mere observation, but because Wash and I were down at the PetStore this evening... the power for the whole store went out.

When we left the visibility was around 10-15' . It was like drowning for me; Wash said he could taste some of the dust but he wasn't even coughing. I have had 2 different emergency hits on my inhaler in the last hour ish. I am for one thanking myself for spending the extra money we never seem to have but I always seem to find to get the super super ultra air filter at home. It's like walking into a hospital in that respect, at least our air inside is clear and breathable.

Driving was a challenge. I never got higher than 36, 37 mph heading home and got to use my super ultra high beams of DOOM! Fun! (I say that from driving an SUV where the car doesn't use the fog lamps for the first 15 years of the car's life!). It was a little eerie driving with few other people on the road, but with the low visibility it feels like you are so alone... couldn't even see the high rise buildings by the lake until we were literally in front of them.

We are home though, and safe.

We had a couple days where we took some time for us as a couple, to talk and such. We feel it might be time to start writing out a book, his book; Wash's story. I have to wonder, is it selfish, is it altruistic to want to share his story, to tell others not only of the danger of brain cancer and tumors and how badly they can effect people and families, but also perhaps our story. The truly Not-Disney story of love, even in the very face of death and loss.

A book though? What all do I have to say, to convey, more than I already do? A book unlike this blog is stagnant, it is a tomb- as well perhaps as a tomb- a place where the memories of Wash and myself are recorded, preserved, but no longer alive and changing.
Where is the line between truth, and story, and history? Am I sharing myself, am I exposing us, or Wash?

When he first realized the WHY of his actions- the tumor- and we knew then that the cancer would rob 50 years from him, he wanted his story told to help others. He wanted other people, young or not, to know his story and that the pain we have had to live through should not be put upon another human. He wanted to remove that specific suffering from the world. He wanted those with GBM to know they are NOT alone, even if it is so rare to get terminal brain cancer at 25.

I started to write as a way to stay sane. As a way for me to record the every little thing in our new experience; I wanted myself to remember the truth of this disease. The good it can bring for us, and the horrid. Life has its own balance and I wanted a way for myself to be able to tell the EVERYTHING of what was happening to us. Cramming 60 more years of life together in (3 if we are blessed and lucky) just a few leaves precious short time for normal memory recall.
I think in the same way parents will photograph their children and babies, I write to record the snapshots of the end of Wash's life, and really, our entire life together as a married couple.

Love is not all that one needs, but without it, even a small bit, it seems like there is so much less to hold onto with life.

I write Life, I live Love.

Sunday, July 3, 2011

Screw the heat, give me two wheels and a helmet

Ah, summer.

It gets to 40C-50C. (In the over 120F range, we were at 118 yesterday). Power goes out (we had a brown-out yesterday) fans barely move the heavy particulate filled air...

Frak it all. I hate summer (here), but there is one, one bright spot for me.

Le Tour.

Every year since I was... 3? 4? I have woken up at 3 or 5am to catch the live stream of at least the first stage. I love cycling with all the passion and obsession that me as an Aspie can have. I have followed teams, fell in love with riders and discarded them after I heard of the doping scandals in the mid, late 90s and the mid aughts too. Breaking Away was one of my favourite movies growing up. I even eventually found that very bike and had it restored, a lovely bright red 1976 Masi - changed out the banana yellow seat and upgraded the gears, but he was lovely and all mine.

Thankfully Wash doesn't mind. He doesn't quite "get it" as a sport, or how to watch always, but I can appreciate how at least he doesn't kick me away from the TV.

So, past few days I have not been feeling -super- something my doctor did warn me about but said it was "unlikely" to effect me. Frak that. After managing to get all the paperwork complete for this month, making sure that we both still have health insurance and prescription coverage, dealing with the car, everything... I just kinda crashed at the end of this week. Too weak really.

Wash was a HUGE help yesterday and went out with my mum to get us groceries. Not only was this a help to keep me on some bedrest, but I am less worried about having to face some of the huge crowds for this weekend.

I've written about it before- check July of last year par example... I have Asperger's. Several times a year I hate living in my awesome home because of the proximity to downtown. Festivals go on, loud music concerts that shake my house and windows from 5 blocks away, and the crowds... usually an extra 20-50,000 people all up in my small quiet area.
People park where they legally cannot.
People litter.
Kids will have sex in cars on our FRONT LAWN.
Beer bottles litter the street. No, I don't like driving or walking on broken glass.

For me, it is just simply too much stimulation. Too much noise and people and all the things that just make me crumble as a person and want to cry and hide away. Normally I just inside and watch the fireworks from my bedroom window- though with the new 3 storey plus Old Folks home being built across the street it will now block a majority of our view. I honestly wonder if that means I can get my rent lowered since the view is now gone...?
I imagine I will be mostly cooking and cuddling with my cats tomorrow. Perhaps Wash will find a distracting movie for us, I can hope, otherwise living through tomorrow is going to be my bigger challenge.
I dislike traveling away because some fucker ALWAYS comes and steals our reserved (in the complex) parking spot. I really have a thing about parking in the same place... it is just a million little disruptions that frighten me and distract me from being and connecting with the world.

Thankfully there is a month or so before the next "summer concert" where I must go through all this again.
Sadly even my prescribed Ativan doesn't really help the panic on this type of stress.

Back to a happy moment to leave off at - I'm still trying to explain about group time trials to Wash- I heard from one of you all, my lovely and kind readers, and though I still have to make contact with the manager, it seems that our local Lowes Hardware heard about our garden being (mistakenly) destroyed they have offered to replace it all, even our mature plants so Wash and I can have our "Victory Garden" back again. I honestly cried when I heard about it.

I also tried my hand this past Sabbath and made challah bread for the first time as an adult!

I will say this as I continue on down memory lane- the first time I was ever sad, disappointing at my sex, at just the fact of being born female... was when my father first informed me that only men could ride in Le Tour and even in my lifetime it was not likely to change. Up until I was 11 or 12 I even held out hope of myself training hard enough and being the first woman to do so. It was more around that time though that I started to move away from socializing with real people- I lost nearly every one of the several people I trusted enough to call "friend". Riding as part of a team began to unnerve me and as I was forced in school to do more "teamwork" I came to the realization that I could never do something like that. 150 mile bike races, yes, absolutely. Did that. But riding as a team...? Not for me. I began to really get more into pathology and finally care a bit about my own families history as a family of archaeologists and a few anthropologists. Dead people just don't -bother?- me like dealing with those who are alive.

That was offsides, wasn't it?

Today involves books, kitty cuddles, perhaps some cooking, and just trying to be. Always now it is a matter of being present and enjoying the now- each day a gift.
Perhaps a 120F gift, but still...

To me, it's not summer until I hear Phil Liggett screaming with passion for the riders.

(Also, probably throwing in again with Team Garmin-[whoever] though I do love certain riders on other teams. I have followed the Schleck boys for years, and remember watching older tours with Max too...)