Tuesday, June 28, 2011

Bunch of Grown-Up Kids

It has been quite the past few days... too emotional to be contained to a single adjective.

Sunday late evening I began to feel not "right"... pain in certain areas that the medically trained Tashi went, "Oh shit, gotta call my doc" kind. So, along with Wash the doc saw me as well on Monday. I have some new pills; though painful right now this might serve me well in the long run. Sadly this is all part of the "have to just wait and see" issue I am currently dealing with. Not that I am being dishonest or hiding, I just don't want to put some things out in my writing until I know (and my doctors) for certain exactly what is going on with me. There are some very probable issues but I still have to wait and go through some more tests before anything is confirmed or ruled out. I am hoping to have some real answers in the next 3 weeks or so.

Right now I am a bit slower than normal, but I still have to be more than 100% as usual. There's never really room for error with me, which does change my perspective and responsibility.

Wash meanwhile did get some good news back with his blood results; some of his med levels were well beyond the "therapeutic" levels so he is being changed a bit with his med schedule but hopefully in just a couple weeks he should be feeling a lot perkier. I'm not as -hopeful- as he is that his fatigue will just "go away", but it is good for him to try and maybe take shorter naps. I'm still worried about him, I always am, but this at least is the best of our situation and with brain cancer I have to be, and am glad to be happy that this is just part of his "new normal" and not something actual cancer-serious related.

I have also been taking my awake time to clean up more around our home and really try and get my papers all organized- or at the very least all located within my file cabinet. Lots of laundry, and even more cleaning now that we have fish. I really am enjoying them all. The maintenance and cleaning, testing the water etc is a bit much but overall it is needed so I see it as just a part of the hobby of enjoying the aquarium. Also Wash has decided to override me and has named the little algae eater we have "Odo" (the otocinclus) . Ha. I really have to appreciate his brain being clever on that. Plus, geeks can mix; Star Trek (DS9) and Firefly....
The awesome reader who sent us Ses 2 of Castle... you rock. That's the season we missed like half the episodes on because Wash was in the hospital or undergoing chemo/radiation. We finally got to see the hallowe'en episode where Castle dresses up as Mal the Space-Pirate. Ha. It's under much better circumstances we get to watch it now, so I enjoy that.
We also will probably be trying to do a local CSTS screening since driving down to Tucson is not a great option.

Today had some true moments of relief. Opened the mail to see a letter from DES stating our SNAP(food 'stamps') benefits will continue (yay! food! eating!) AND... best and most relieving of all was to me from AHCCCS stating that they are going to continue covering me with health insurance.
(sigh of .... )

Honestly for the last few weeks I have been having to think about the reality of me being dropped and perhaps having to pay for a surgery and all follow-up out of pocket. Thankfully I can breathe and know that Wash won't have to try and sell any of his things if I get more ill.
No word back yet on Wash's insurance or his MediCare switch over... now that does worry me a bit. Shall just have to think positive and hope on that one. The sad thing is there has to be a way to make all of this easier, quicker, and less expensive for the patients. I keep trying to think of ideas but I really am not in any place to suggest or even put into action plans. I think a lot about the other people in Arizona going through very similar issues right now. I can't help but do it, living here I do feel abandoned by the people I tried to vote for (the elected ones at least) and their empty words and feignted actions.

I think we as a country will not really have "equal access" until the people in charge change. Joking with Wash about running for office; I'd have no chance I think in actuality, but if somehow it happened, oh the policies I would change! The help that would be ready and freely accessed. More libraries- everywhere. One of the best way to solve poverty is to educate and allow people the options and the freedom to make new and hopefully changing decisions. Not to mention my thoughts on the re-legalization of hemp and taxed recreational cannabis use... that's another time to talk about it.

Really what I wanted to address tonight was the aftermath of the first Brain Tumor/cancer support group we went to this evening.

Wash enjoyed himself. He liked making some new friends, and talking with others about all his issues that people who don't have cancer, or have not dealt with a Traumatic Brain Injury just don't understand. The little details in the everyday routine. He was the longest GBM survivour there tonight (I believe. Going on his info here)

My time was spent with the rest of the caregivers/family/friends in a separate area. It was... odd. The people were all wonderful, I want to be clear on that. The other new people and the ones coming for years, all super. It is my own Asperger brain that leaves me just... uncomfortable around others. I know I probably came across as very unemotional or 'cold'. Rational. I answered questions and responded, but did not really get into much of our history or details. None that were not pertinent to the questions asked at group.
I was also the youngest one there. I'm guessing the next closest in age was someone maybe in their mid 30's to 40's.
It hurt to be so clearly reminded that this disease does not often strike people Wash's age. Most don't live as long as he has either. It feels odd to me to think I am giving advice to people so much older than I am. It has been a long time since I have felt out of place with age and maturity.
When I was young and into my teens I almost always would spend time "hang out" with older people. Teachers, family friends, neighbours etc. There was always this feeling of unease for me, even though I could speak intellectually on the same level there was also this (un)spoken drama about how young I was- though to me age and maturity and intellect are all on different yet sometimes crossing parallels.
Tonight brought some of that back, being surrounded by people older than I, with more "life" but all the same sometimes looking to/at me seemingly hoping I would have the answers that I suppose are searched for for an eternity.

Listening to the other spouses talk about their lives also led me to wonder how many might be better adjusted if they just remembered the perspective of it all. I guess being so young and having our perspective virtually moved for us, it makes me question why those older don't seem to understand the value of time; even if it is not always how you imagined having or spending it.

The last thing I think I discovered this evening, and the one right now I hold onto the most is the idea that I am doing something with my life.
I write now.

I write Non-Fiction. Some people even seem to think I do a fair job of it.
I have always had words running in my head. Writing the 15 page essays and such in high school was easy and often fun for me. I read Non-Fiction all the time. I live in books, in words, in typeset. I had just never considered really that me writing (as often as I can) could be considered - work?job?- maybe a future for me.
Do writers do it for you, Dear Readers? Is is more altruistic and for themselves?

This is what I shall ponder on.

Sunday, June 26, 2011

Where's Alanis?

This will be short for right now; I have a few precious hours where Wash is at the movies/lunch and I have time for ME (or at least being alone). I've already used some time for errands, so trying to just enjoy my "free" time.

*Surprise! Got a pedi today when I took my friend down to the day spa/hair place to get her toes and hair did. So I got me my toes did. There are a lovely Robin Blue and I'm really quite happy. Massage chairs helped too I think. (Yes, I am aware it is not the correct tense, I'm mocking the phrase I hear girls say when they go to the salon.)

*Spotted on the way home a big SUV with a Che Guevara decal, vanity plate LCHEGUE and the bumper sticker "Stop Youth Violence and Gangs!". Small helping of irony anyone?

*Cleaned the kitchen, washed and folded 7 loads of laundry yesterday, completely reorganized and re shelved my DVD collection (no, not the VHS yet, give me time).

*Spent a ton of time getting 2 months of paperwork ready and organized and time on the phone with AHCCCS/DES/SNAP and dear gods of Kobol above us I hope we are all set on that. I also attempted to get Wash's MediCare parts B and D done for him paperwork wise. I honestly have no idea how Seniors do it. Shit needs to change.

*Taking Wash back to the doc tomorrow; hoping he is "toxic". Right now either he has too high levels of medications/chemicals in his body and will need to be fixed (less/different pills perhaps a transfusion) OR this is just the ravages of brain cancer. I'm honestly hoping for the first, at least that can be treated.
I don't want to lose him yet. I'm not ready. Some days he really seems to be slipping away as a person, others he has personality.

*So much for the Tetras. All died. After some treatment and care (by me of course) the school of GloFish (coloured zebra danios) we have is happy and stable (ammonia =0 !) and Wash got a handsome red and blue betta fish for his 3 gal tank.
The betta we have decided to call "Jayne".
The GloFish are; Mal, Zoe, Wash, Kaylee, Inara, Book, River, and Simon
The little catfish I am still deciding on between "Tim" and "Joss".
If I get enough feedback y'all can choose which name you like better!

*Changes; we are moving Family Taco night this week. I have decided I am ready to try a group "support group" and we are planning on attending the next Brain Tumor support group at Wash's hospital this week. I'm scared and nervous. At the same time, I want to try. I want to see if I really am ready to face some of these issues.

*Thankfully I did not have to take myself to the doctor or hospital this week; managed to give myself some liquid stitches on an elbow lac I gave myself this week. Barely a half inch but man that thing frakkin' hurt for the first two days.

I will be getting back to emails hopefully tonight and hopefully a more in depth post as well.

-Leto doing his best to "help" Wash fold his socks.

Thursday, June 23, 2011


Happy Birthday Joss!

Thank you for your wonderful writing, which helped me to learn. Thank you for your creative eye, which caught my heart. Thank you for creating a community, which led me to my Love. Thank you for the message that Browncoats do not give up, and that as I do truly believe; A Browncoat Never Stands Alone.

Wishing you a most happy birthday.

(And perhaps a few more for my husband so he can enjoy more of your work as well)

Wednesday, June 22, 2011

Most unlikely

Trying to get Wash into the doc's this week; he's not well. He's now sleeping upwards of 20+ hours out of a 24 day cycle.
He thinks he might be a bit depressed as well; lots of bad news for him in a short time, with very little to help him adjust.
We also heard from his parents that his family dog passed last week of old age. We knew it was coming, but this had been his dog for ... 10? or more years. He was a good dog. What I love was this Border Collie's last mission- a few months ago when Pete (the dog) was outside he found a little abandoned kitty. For a few days/week he would pick up his bowl when he was fed and bring it out to the kitty in the backyard and made sure the cat ate. Eventually Wash's parent's noticed this and slowly realized that their dog had in turn, adopted his own pet! So Wash's parent's ended up with PK (Pete's Kitty) who is now the family pet. He watched the family for a long time and in the end, he left them with a new pet, a new someone. Can't beat that legacy.

I still have phone calls to make a a million pages of documents to scan and fax. Not to mention that I've been kept up late and sadly, unlike Wash I don't get to have 6 hour naps during the day.

Laundry too. And vacuuming. And I'm certain other things I am forgetting.

Op! Ok, got an appointment in with the doc for Wash today.

Time for kitteh cuddles of our own for right now.

Monday, June 20, 2011


"No news is good news..."

Except when it comes late because a consult or specialist was needed.

I am trying not to be scared shitless. Failing.

Send me good medical mojo if you can friends, please. Apparently I need it.

Saturday, June 18, 2011

Ghost in the Shell

I tried sleeping last at 11 something and then 2am. No luck. Did not actually get to sleep until well after 5am for me. Wash rested a bit better.

I spent a while in the downstairs bath with the water running just crying. Sobbing. Letting the moans of pain in my heart just come out. Is there even an English word for that kind of pain? Keening? Howling? Moaning?

It's the sound a human, I make in the dead of night when my brain cannot run from the facts of my life and existence. It's the sound brought forth by the pain of an unnatural and shortened life.

This should have been different. Things should have gone another way. Does the world balance? Is my family ever going to exist or is my gift death?

Now comes the time when all my old work that I was doing and studying to become a board certified forensic anthro/ osteologist. At night Death comes around.

I wanted a husband to live with me for at least 50 years. I wanted to be pregnant not just miscarry. I wanted a Life, not just an existence- an open and unresting mind.

Sure, right now Wash is beating the odds by incalculable leaps. This I know all too well though is real life. This is not a story. This is not "scripted". I have no choice but to make the best, happiest, and most loved time for him now, because I cannot afford to let myself think of a "happy ending".

There is no "happy ending" with brain cancer. Not for him, not for me, not for any of us.

No one ever said to me that Life was fair. This I know.

I can still mourn over the losses I have to witness day in and out though.
Life today tastes of dead ash and dried dreams.

Thursday, June 16, 2011


It's Wash, everyone!

Some curiosities about my condition, that baffle even me:

With the past few days my sleep schedule has been all over the place. I had an ideal day where I got eight hours of solid REM and I only needed one short nap 5-6 hours later. Then I'm up until 3AM, becoming functional again at 2 in the afternoon. One day I crashed at 10 PM, then awoke at 4AM.

Additionally the dreams seem more vivid, to where I can recall pieces and images from them hours or even days past having them. The Jury's out on whether that's a good thing or not.

And on the topic of sleep, Tashi is slumbering to gather all of her will and effort to battling off insurance once again. Especially after some huge efforts to raising funds for us this preceding week. Her stress over the last few days has taken its toll on her.

I love her, and I thank all of you that donated.

Dream sweetly, Tashi.

And thank you to the rest of you,

Wednesday, June 15, 2011

From my friends

Time for the big girl pants.

We need help. I have bills to pay and no real money to pay it.

According to all the paperwork I have (though no one ever picks up a phone to confirm this) Wash's prescription plan is changing as of July and I will be responsible for the first $3-6,000.00 of his prescription cost each month.
I can barely afford the gas and co-payment to the doctors as is!

There's the car repair; but without that Wash cannot even go outside.

There's electricity, which of course goes up in the summer, again Wash cannot control his own body temperature so he needs to be in a controlled environment. That's all expensive.

Food. Car insurance and then this month as well registration costs and emissions tests.

I would like to have money so I can get myself some summer clothes. I own 3 skirts, one pair of long pants and one pair of capri length pants. Yes, I am really being honest here. I'm not all "into" clothes, but you know, I can appreciate wearing something that is not 7 or more years old and with half the seams worn/torn out.
It would be nice to be able to wear clean new clothes this summer. For Wash as well, but I tend to take care of him first, so he has gotten new clothes about twice in the past year.

I need help. I cannot do this on my own.

This is me, being honest and open and asking any of you who can to please, if you can, help me to keep Wash in my care. Help me keep him from being put into a "home". Help please so I do not have to think about more things of my own (of course not Wash's) that I could sell just so my husband can die here, in the place he/we set up as "home".

Apologies. My day started after about 4 hours of sleep with vomiting and loud car alarms that went on for almost 2 hours. Today is a day where my fears control me, rather than the other way around.

Every day we live brings new challenges and fears, but I also have -have - to hope that it brings new chances and opportunities as well.

Monday, June 13, 2011


My Kiwi (New Zealand) readers and those in the South Australia area- you have my best Hope and heart that everyone is ok and you can make it through.
Please stay safe and if any of my regular readers from down south way want to check in and leave a quick "I'm ok" .... I'd feel better.

Today's plan? Resting for me and phone calls in between. Paperwork. Hopefully I will get to my pile of Thank You notes as well.

Also plan on going out tonight and getting two little neon tetras and a small catfish for the tank. I'm quite excited. It's a nice little set-up we have for them and I am finding myself just taking time to watch the movement of the water -again even before we have fish! I am slightly hopeful right now this will help with the excess stress.

Mostly though I will be hiding indoors today due to the shit air quality outside. I'm back to asthma issues but I'm already seeing my doc this week so thankfully I will have quick help if my breathing gets worse.

Sunday, June 12, 2011


Bear with me on this, I have been away true, but needed to escape everything but my own brain for a little while.
First things, so last week Wash and I got some official medical news that was just... shitty. There's really no other word. Not "I'm gonna die right now" type bad, but up there. It has taken me some time to deal with this medical issue physically myself and Wash has been taking some time to try and be supportive for and with me. Really the only other thing right now I want to say on it is that I will most likely not be writing around Father's Day this year. It won't be the same as we imagined.

We took time. Time to reflect a lot this week; I certainly had enough challenges come up. This
week I have to continue my "normal" job of dealing with the DES people who want to mess with our Food Stamps, and I am trying to figure out what is going on with Wash's insurance as he is being dropped from certain services with our AHCCCS insurance and I have to now not only figure out what is going on with Wash's MediCare- because apparenly I am supposed to change which plan on those he is currently on with something else. A lot of instructions telling me what NOT to do, but not that much help with which correct papers I need to file. Le sigh. Not to mention that AHCCCS changed their phone number on me in just a mere 4 days after mailing me a letter with an old disconnected phone number attached to it. On top of that I am also trying to figure the correct wording to send a letter to our landlord to settle up our "Garden Problem" so I can get both my backyard put into some semblance that does not seem like scortched Earth and hopefully some money to compensate for all the shit that has come from it.

As far as the car goes thankfully she is all fixed. $1400.00 I really did not have, nor that we wanted to spend all of the parents' emergency fund. The car runs now safely and we have Air Conditioning again which is so so SO important not just in summer in Arizona, but also for Wash who cannot regulate his own body temp. This way at least he and I can both get out a little bit more now. Though we are far too broke to buy gas or really do much of anything. I am beyond thankful that it was not worse, that it didn't die on the freeway that night, that we made it within a mile of both my parent's house and the car repair shop. I'm thankful that the car did not project out the explosion and it was contained under the hood so neither of us was burned. I am thankful as well that it was repairable and I am not (currently) having to shop for a new car that I really could not afford at all.

We've been this broke before. It is scary, but it is no longer a new feeling of fear. It feels like the fear of all that can be lost because we can't afford anything ... it's not fear anymore, just stress. No new fears, just the feeling of 'stress' now at having to try to figure out how to get money to pay for gas, rent, medicine, electricity... Always more and more stress.

My hope is to change that. My want is to change that. I don't want to be afraid, but I don't want to live the rest of my life so stressed that physically I hurt myself. I have been trying to ask for help lately. Honestly. I have been asking Wash to specifically help me more with things, and I have learned that when I ask him and he CAN... he will. He does for me. I have other friends and maybe it seems family who are willing locally to do what they can for me. I've found lately that sometimes just speaking and honestly out loud going over all that I have to do, all the things that overwhelm me tend to become less of a hostile feeling in my head. It doesn't "cure" anything and it doesn't make problems go away, but I do feel at least some relief, and lately that is what I have been searching for. A way to release all the crap and shit from my life and just try to enjoy what we have and what is around.

Wash won't be here forever. As happy as I am every moment of every day that I can share with my husband, I know always in the back of my head that I am having to remember more to enjoy and to love more- because I have the unfortunate luxury of knowing that I will not have a "long"
lifespan with the person I love more than myself. That hurts. The pain is tempered by the good
days though.

The beautiful summer moments where Wash can wake up and be walking by himself before noon. The days where we can meet up with old college friends and catch up on time gone by. Lovely days with moments for just the two of us. A nap. Cuddling with furry and purring cats. Midnight walks in cooler air where we talk of a future that might not happen and just try to be content with living in the now. We have those moments and I long for more. I have been taking time to learn how to live in it. It's an amazing thing; to feel so young, and old at the same time. To feel so much more mature than others in my age range, and yet, I'm not even 30. It's not that I have some great desire to grow older fast or suddenly be young again. It is just a further note in my mental file of myself that I'm NOT the young person I once was. I am an adult and lately, I have been feeling it.

One of our close friends (and Wash's frat bro) is an awesome kickass lass I'll give the moniker "Sr" for my blog. I've been helping her over the last little while learning to drive and getting her licensed and she in return gives us lovely company and laughs and smiles. She also recently donated to us an aquarium set-up. So, this week we will be picking up about 3-4 fish to enjoy watching swim around their new home. So far the kitties seem to accept the tank and have not been trying to knock it over or anything, but it also does not have fishes right now. I will say though, I do understand the appeal. With our tank when the lights are out in the room and it's just the tank's light... the movement of water, the colours, it just helps to center my brain into a more relaxed state. We ended up watching it (again, no fish) for about a half hour straight today. Wash has named the sunken ship we bought for it the vessel Harkkonen and I'm
considering just naming all the fish we get "Nemo". I'm not really seeing it as more pets, more as a way to invest in a way for me and Wash to relax at home.

We've been trying to find more "busy" things to do; lately it has been being over at our local library. I have a nice pile of non-fic to work through and we also have been raiding the PBS supply of DVDs over there as well. Lots of awesome BBC/PBS specials and other old movies we have both been enjoying catching up on. This week Wash has the Horatio Hornblower series to watch and I am set to hit up again the new BBC version of Robin Hood. I managed to get a copy of the last Christmas special of "The Vicar of Dibley" and holy-AdamBaldwin-height batman! I have to swoon and uncontrollably make "whoo" noises at the jaw-droppingly tall Richard Armitage. It doesn't help the room to de-fog when he starts smiling either. Good gods of Kobol I have a giant of a new crush.
Thankfully Wash is not a jealous husband towards the few people I "whoo" at on TV. Nor do I try and deprive him of any screen time for Stania Katic either.

The twitter version? Lots of shit-as usual- Wash and I still live and love, it's hot and horrid on my asthmar right now and we are beyond broke. But we still laugh with each other and I'm still thankful for all that I do have. Some days are good, some days are not so good, but they all end the same way.
My Wash by my side, a kiss, hearing "I love you, now and always", and the security with his touch.

He is my heart.

Friday, June 10, 2011

Om nothing's going to change my world. . .

Tuesday, June 7, 2011

Sadly today our trusty steed betty the blazer had her radiator blow. Spent the night getting the car towed w stepdad. Did not need this.

Sunday, June 5, 2011

As Promised, 1

Frakkin' scanner. S'got Wash all swearing and upset.
To me, it's worth it. Hopefully I can upload the rest tonight. And I think we need a new scanner or cable or something.

Yes, he really is that tall. And solid.
Would that I had but a mere bit more courage, I could have grabbed a bit o' arse as well.


Dealing with some health issues of my own right now.

Trying hard to stay positive in the midst of "We don't know" and "Just one more test" "Results might take another 3 days..."


Tiny, tiny bit of good news; we heard from a "friend" ( don't hang out much but he calls and checks in on the two of us) and he has said that he has been looking and is trying to get us a few new *mature* plants to replace in our torn-down garden! At this point, I'm not even that picky with what variety of bush they are, but am happy he thought of us and wants to try and help.

Really really trying to think cheerful happy thoughts today. I'm trying not to be sad, depressed, or mourn. I want to cuddle with my cats and just try and ... try to just get through today.

Also, I could so use a good cuddle with a puppy (or a dog who still think's he is one).
I love my kitties, of course, but sometimes I just miss having a good long cuddle with a happy big dog.

Thursday, June 2, 2011


I will probably get the 'Con pics all uploaded and most of our adventures written up tomorrow/this weekend. You will drool over my pic of Adam Baldwin. The man... he is like a tree. Tall, solid, hard... mmm. He's on my list. My right hand has also touched Wil Wheaton. Thankfully, I have an awesome understanding husband who doesn't get jealous at my melting over peeps like them and Aaron Douglas.

Today I'm just dealing with the fallout from yesterday's good-news MRI with Wash (emotional roller-coaster, but he will get through it) and his physical needs. He has woken up very early for him for the past two days (functional, dressed, and walking by 8am) so he is needing a lot of rest for his body and brain today.
We're watching Galaxy Quest right now, then probably the newest Star Trek and Ratatouille later on. The latter came as a nice gift yesterday from a reader who also has pet ratties. Wash wanted to pass along they are the cutest pet names he's heard. I'm an animal person and have had friends who have had pet rats growing up, so I think fondly of them. They're terrifically smart little rodents. However, I think if we were to bring one around Leto might get a little too interested in 'playing' and that would be bad.

I'm also needing a little cheer today. I've been waiting so gorram impatiently for some news (and I'm hoping it's good news) and instead of a clear answer or a date when I can get an answer, I find out I have to wait AGAIN just to check. Sorry if this is a bit unclear, it's just easier to be vague than write 30 pages of frustration. I might know something Fri, or maybe Sat, or maybe Mon.
I'm a terrible impatient person at heart. One of the biggest issues I have been trying to improve on my whole life is patience. I don't think I really started to learn what that meant until I really was doing body-modification in my teens.
So, I'm here pretty much stuck next to Wash today and have little to distract my mind from turning and twisting and giving me more fears. Hence, Galaxy Quest. This movie is beyond awesome and funny to me, actually more so after I've had the Con experience. I love not only the cast- including all the small bits and actors I recognize who don't even have lines! I truly love the play between all the actors and the character in a character in this film.

I'm also finishing up giving some driving lessons to a friend so that has helped to keep me occupied for a bit this week as well. That and kitty snorgling.

I hate uncertainty and I'm impatient. Two strikes against me for this week.

Wednesday, June 1, 2011

Back from the hospital and a "clean" mri for wash! No new tumors and he has some blood vessels growing back too! He is resting now. :D