Wednesday, February 29, 2012

The Fiddler

I have a few minutes before the busy day today begins.

Wash asked me before we went off to sleep early last night (before midnight for me!) what was *good* about my Tuesday.

Outside my supreme high stress day, I thought more and found several nice moments.

Wash brought Leto outside on his leash to keep me company while I gardened. I grabbed another half dozen ripe tomatoes, I have several pea poles now, my watermelon has just begun to come up... it was a nice way to spend an hour.

We also got to cuddle for a few hours and watch the start of "Dexter" [which neither of us have seen] and even ate dinner together at the same time.

Wash was physically strong enough to go on a walk with me yesterday too.

We got a few nice things in the mail.

Right now, I'm going to try and skip and gloss over the bad parts. For now.

But my day ended as perfectly as I could ask; with him warm in my arms.

Sunday, February 26, 2012

Gathered up a big storm

I managed to make a few new Walking Dead BINGO cards to play on tonight with our friends. I have so much fun trying to put my Aspie brain to work and figure out the trope patterns and the plot points. I've had mostly great feedback and outside some geek specific shows I made for me & Wash to play (The Invisible Man, Coupling, Torchwood, OZ, The Wire) I'm thinking of doing some for more current shows, like Law & Order: UK , continuing on for ses 5 of Mad Men, Downton Abbey.

I did this while Wash played with the Hospice Volunteer who came over today- as requested, "The geekiest one you can find!" said Wash. Well, when Will's* eyes lit up as he saw our TARDIS cookie jar and recognized Leto's name "As in Atredes?"
So, he spent about two hours over learning some more Warhammer and Wash taught him Munchkin (Steve Jackson game) so we three can play next Sunday. I think it will be fun even if it is not "me" time, it's time we can spend doing something fun, as it plays much better with more people than 2.

I spend a lot of my time thinking now. Going over thoughts and sometimes running as fast as I can away from them. How lucky to have had all this time, but how angry I can still feel that I won't get my "lifetime" with my husband, how we won't have all the things we want so badly, the smallest and simplest things. It hurts to spend so much of my time worrying about money, worrying about how I'm going to pay these bills, how long I can push others off, how badly my own credit score can really get...?
I ache for the children we will never have. I hurt that Wash will not get to see even his nephew grow up.
I hurt watching him cry and try to move past his dream of being a licensed Architect. How he stares at buildings sometimes, not able to speak a word but the pain is brilliant in his eyes.
I ache with the remembrance of pains he has long since forgotten, but not forgiven. How does one forgive when they do not remember they have been crossed?
He was looking for a specific Warhammer codex today for Will, before he remembered he had loaned it to a friend who literally just left him (and us) when he got sick. Who did some real shitty things to a friend who just had brain surgery and found out he was dying. All those memories, things he had forgotten for two years came back.
Thankfully for Will, he was able to keep Wash distracted enough to move past it or maybe with his short term issues, he just forgot again. I can hope.

I want moments of happiness. I want a chance to savor and remember what I know will be too short, too sad. I want something special, something more than just seeing the decline. I'm thankful every hour I get to spend with him, that he is alive, but I want more than just mere .... "well, he's alive...". I want to be thankful he is living and enjoying the life he has. I want more time for that, I want more chances for that.

Ah, crying now. That's my cue for the moment to stop writing. I am trying my hardest to keep the stress and drama away from Wash, and as I'm writing this in the afternoon not 2am when he's asleep, I have to be careful how he sees me. Sometimes he cannot understand the reasons why I am in pain and he just wants to do something to make me feel better. I try and keep him from having to feel like he has to take care of me. He should be focusing on himself.

We dated for 3 months before we got engaged. We were engaged for about 9 months before we eloped in secret. I had from the end of March through about May before his personality had changed so much he was hardly recognizable as the same personality. Realistically, I had one year to "know" my husband, my best friend, and the person I swore my life to.
I had about 6 weeks of being a "newlywed".... except since our family did not know we had eloped, most of our friends did not either. So, it was a secret and silent marriage.
By the time everyone knew we were married, all anyone could focus on- and should have- was Wash and the cancer, and the word "terminal".

I wanted to elope. We wanted to elope. We wanted something small, something that was all ours, that we "owned". I remember every lovely moment of it; even the scary parts and the first laughs we had as "Mr & Mrs."
But, we wanted (before the Cancer) something large for our families and friends to share and celebrate too. We just never got there. It was supposed to happen for a "anniversary".
I ponder these thoughts as March 14th approaches; our 3rd wedding anniversary.

My defining years as a wife have also been as a caregiver. I have never known another way.

I am sad about that though. I wish the 4 years I have been given to spend my time with him would have been less of "nursing" and more of "being his partner". I wonder if in a different universe 20 years from now "Pratt-King" would have meant the same powerhouse as "Charles and Ray Eames"? I can still hope for that future there, I suppose.

I just truly wish we as a couple, as a husband and wife, had something great to look forward to, something to celebrate.

*Not his real name

Thursday, February 23, 2012


We had a super long day yesterday; about 4 different people (Hospice) came by during the day! But, Wash and I both had a good chance to talk about some issues, and get some tools to really help his life (and mine by extension).

So though he did sleep in until almost 10am today (stress, physical movement, and emotional processing all drain Wash) and was a bit physically slow to start, Wash seems mentally and emotionally "better" today than he was in the past couple days.
He's doing some thinking and my hope is he is realizing that he has a LOT of help right now, and he does not have to feel so "alone".

I had a couple good moments as well.
My Social Worker, Dave*, shared a little of his background with me over the past few days and it is - it feels like I have a solid foundation now, I have more confidence in certain parts of my life and needs, and I feel stronger to even ASK for help now. We spent a little while talking and reminiscing and I had such a nice moment when we both realized that individually people from our lives had asked us the exact same questions and we gave almost verbatim answers.
Mark over at Trouble Blogging; I think would appreciate it as well. Certain things married/partners understand. Certain things you can't even imagine until you become a Caregiver to the person you love and were intending to spend a long life with. [This blog is GLBT*Q friendly. I wish every consenting adult who wanted to pledge their life to another consenting adult could, legally. I don't care if the term is "partner" or "husband" or "wife" or "lover". They are the person you love, care for and about, and want to spend your life with. That is enough for me. A Government refusing to recognize your status as the partner does not negate the loss any. /Soapbox]

I also wanted to take a moment to remind myself to thank and remember how awesome our friend Andy** has been through this.
He has his own shit in life to deal with, and his own grief.
But, he has been such a steadfast and loyal friend and I could not do it without him. In the past few months, half year or so he has been trying very hard to make sure he comes over at least once a week (and in the past month or so he tries to come over several times) to spend time with Wash. Sometimes he takes him out to do "guy stuff", sometimes he just "sits" for Wash so I can get away for an hour, and a lot of time he does what almost no one else does; he acts like a frakking normal friend to us both. He doesn't care how sick Wash is when he is over, he simply understands. He talks to Wash, plays with him, laughs, and makes stupid jokes. He helps Wash to forget he is a "dying" guy and instead, he's just "Wash", Dave's friend.
I want to write down how much it means to me to see Wash still have that last little bit of "normal". To have a friend who wants to see him to hang out, not just "check in".
I know not every one of his local friends can do this. The great friends we have close by we tend to see weekly, and even that cheers up Wash.
But, Andy? He's special. I will be forever grateful for just how well he has treated my husband. For how GOOD of a friend he has been, and I hope he will be.

For every asshole I meet who says something about Wash "deserving" this cancer, or that it is "Gods' Will" for him to be this sick and dying, I have awesome friends like Andy and others who prove that there ARE good, kind, and caring human friends out there.

No drama today, just a day to rest and smile.

*Dave is not his real name
**Andy is not his real name

Wednesday, February 22, 2012

Valentine Anniversary

I am also a Cat-Lady.
On 14th February 2012 my little cat turned 7 years old.

She's been my constant companion and most loyal friend for 7 years.

Happy Birthday Aelphaba Shadowplayer Pratt-King. May the Lords of the Catgods give me 7 more years to enjoy with you.

And may you enjoy like the best thing on Earth your can of tuna today.


To me, if a person reads a truth, a verifiable truth, and takes personal umbridge; that person either has a valid reason for being angry; or they feel guilty for empathizing with the painful portion of the truth.

But, I'm weird.

I'm writing this post as a letter; I won't use names to avoid further mmmm, pain, but I will share the story.

Dear MFW,

I think I would be crazy and unable to care for Wash if it was not for the humanity of Hospice Care. 1 & 2 are driving him sad and crazy all at the same time. I am seeing my husband in so much pain, and it hurts me as his caregiver and his wife to see that. I don't want to see someone I love in pain. Emotional or physical.

Rationally I can understand that shit happens. Things fall apart. Shit happens at a really super bad time, and then like dominoes, the rest fall too. I get that, I do. Truly.

Wash doesn't. He sees hurt and he cannot see the reason behind it. He cannot cognate like that anymore.

I know you are right when you say that they are making his death about them. It sucks and it is painful to say but it seems to be the truth. Denial is painful for those around.

Hospice has been so helpful though. As hard as it was to make the decision to call them in, I think it was one of the best things I could do for Wash. He is able to speak to others to gain emotional and physical support. And relief. He can talk about 1 &2 without feeling guilty about even admitting he has problems with them. He can speak about the pain they cause, and hear from a professional that perhaps 1 &2 cause him pain because they cannot face the pain the truth would bring to them. As hard as it is to understand, it is easier to hurt Wash than it is to face the painful truth themselves.

We are taking your advice and trying to enjoy this week instead. We are trying to focus on his happy and high level of Quality of Life and giving him the best life possible while he can still enjoy it. While he still knows who he is and who others are that love him.

I do not know how long it will take him to get passed this. I hope soon. It's hard to move past something you don't understand, and with brain cancer the real truth is he just does not understand everything anymore. Sometimes I fear we are too far passed when his "best" time would have been. The longer the wait the worse he does get and the more he does not understand change.

I feel more hopeful not that I can change this, or cause someone else to move past denial, but I feel hope that I have support; Hospice and a few friends have stepped up, some family too, to really make me feel like even on days I "can't" do this, I can. And I will. I feel more hopeful for myself as an individual and human coming out alive after this, after he goes.

I love you, and I could not do this much without you. Without knowing someone is hearing our story, our pain, our small triumphs.

Things will change, he will degrade, but I feel- today at least- that maybe I don't have to die with him. Maybe it will be ok for me to say "Good-bye" and not "Wait up".
I guess I have to fight to live to see.

Monday, February 20, 2012

Wash's parents were supposed to come in and spend this week visiting him /spending time with Wash / helping give me some Respite time.

They cannot come.
Kind of waited very last minute to tell us.

Rationally I can completely understand it.

Emotionally? Like my husband I am beyond crushed. "Disappointed" is a light term. He wanted and needed this time with them.
We don't know how healthy or mentally aware he will be the next time they decide they can come.
I had to clear my entire schedule this week, now I am scrambling to fill it in.
Yes, I was looking forward to a little Respite too while they had a chance to bond.

Wash is just sitting on the bed hunched over and cuddling his teddy-bear, Hoban.
Fuck bad news days like today.

Life has been SO GORRAM unfair to him, I hate days like this.

Friday, February 17, 2012

Somebody that I used to know

The nature of brain cancer is such that -being in and of the brain- it is rather unpredictable.

Wash had a much better day today, and in turn I did as well.
I let him sleep in an extra hour in the morning, and he felt strong enough to actually go downstairs and eat breakfast at our table. That happens every few months or so, it was quite nice for me.
He also said he was in much less physical pain today than yesterday, so that seemed to contribute in a positive way.

My mum came and talked to me for a couple hours yesterday while our Social Worker stayed with Wash. He has a medical background as well, so I do not have to worry about Wash's level of care. I got a chance to vent about a lot of things, and just ponder some questions I do have to answer, at least to myself.

Had some of Wash's frat bros come over in the evening to help me watch him and do a few errands. I'm finding that asking for help is not a terrible thing, even if my brain thinks so, and Wash really responds well to company and stimuli that is not just, well, me.

So, today went a lot happier for us both. We had some more good talks with our SW, and Wash had his hair cut and beard trimmed by his CNA who came over in the afternoon. We even got in an episode of NOVA and he managed to stay awake through the whole thing. Then he crashed for about 2 hours.

There are some moments I live in 15 minute increments. Some nights I am tired enough that I do just fall to sleep instead of burning my brain thinking all night long.
I have to remember I do not bear this alone. There are other who have walked before me, and some who can share with me now. It is hard, hard often to remember this, but I have to.

He will be my husband until death. Parts of him might change or be lost, but he is still mine. He still fought and came back from death twice for me. I can mourn, but I cannot let myself forget.

Thursday, February 16, 2012


I feel my husband is no longer "there". It's a person I don't know living in my husband's skin. He's angry all the time. He's sad. He hates to "do" anything that is not play or fun. He won't have a real talk with me, and all my own concerns just become sharp barbs for him to cut me with.
Today, he said if I had stayed on the anti-depressants I would not have miscarried.

I can't handle this. It hurts *so much*.
I don't think I'm ever going to be having sex with him again. We sleep in the same bed still, but we don't even touch, unless he is taking the covers.
Yesterday his new nurse came for the first time to help him bathe.

He's still HERE, but the person I love is gone.
The man I married would not say those evil words. I know it's not "him". That's the cancer speaking again.
I hate cancer.

I am just so tired. So sad. I want to go to sleep and just never wake.

Cancer is not a good death. It does not give dignity.
It takes and takes and takes the very things we love. The parts of ourselves we can't function without.

I wonder just how much "Wash" is left? Is there any part of him that still loves me? I know he remembers who I am, but I don't think he remembers what I mean/meant to him anymore.

It's not fucking fair.

He's only 27. This is just not fair.

Tuesday, February 14, 2012


It's been a while. I've thought about making a video, trying to see if that would be easier. It's not. None of this is easy.

It all hurts. Everything hurts.

I should not have given him the ultimatum. I should not have asked of him anything. I should have left my image behind of who he was and made peace with that.
My mistake to live with.

I demanded from him recognition of myself as a person, someone independent of him with her own thoughts, and desires, and wants. He asked. He asked me what I wanted. I told him.
Gave him options, wrote a list, said it 11 times in a hour, gave him the name and number of who to call for help... and then just could not take it anymore.
Yes, he did in a way try to make me dinner. Thursday.
It did not happen.
I did not help him (outside of caving and actually physically mashing the potatoes for him). I left him alone and spent days watching him put off and half ass something he was supposed to be doing for me, until he could no longer procrastinate and had to make emergency phone calls to friends (more than 2!) to help him out.
He says it was a lesson he needed. He said he needed to see and feel for himself all that I do- every bit that I pick up behind him, take care of his needs, remember the details, leading the follow-through to make certain things have been addressed.
We did not have the meal until Saturday.**

My asthma exploded through this. So much stress it felt like my lungs were collapsing. My mum took me to my doctor on Saturday (that or the ER!) and I'm back on steroids, but also breathing again. Having dreams of being tossed out of an Airlock and suffocating is not really my ideal way to rest.

We have a few new counselors from Hospice to help with grief and such.
It is occurring to me quite roughly just how much my husband has changed in a year. Just how far further he has fallen. How much more help he needs, so much more patience and repetition. I am left feeling more and more worn. I feel used and less human.
I miss my husband.
I miss my friends.
I miss having goals, and wants, and desires.

I miss how pain-free (comparatively) life was for me 3 years ago.

I'm stuck now and there is no good way for me to get out sans scars. If I truly treat Wash like how he *needs* to be, then our marriage is over. I'll be purely the Nurse/Mother and we just will not be able to have that intimacy between us. I *have* to infantalize him because that's what the fucking brain cancer did. It stole my husband. It took the person I love so much. It took his higher functions away. It left me a body of a man, with the memories of a young adult, and a mostly destroyed frontal brain.
I've been pretending so hard. I've been giving up my own life to prop up a lie.
I wanted to believe that he would get "better". That he would become aware. That he could get back to at least being able to look after his own self-preservation.
It has not happened.

I'm left with a shell of the man I swore I would be with until death. I'm left with the anger, the pain, the fear from him all directed in these 4 walls, which all comes down on me.

Brain cancer stole my Valentine.

Honestly I don't know if he'll be here in a year. Days like today I'm forced to really look at a clear future and he's gone. He's not here. I have no card. I might get a chance to get a real one for him today, but I'm eating the pain of the knowledge that he did not remember anything for me. He simply cannot remember. Not on his own. I'm learning that he doesn't consider me that important. It's easier on him emotionally to get lost in a story or pretty movie, or a Wargame than it is to take the time to empathize with his wife. He's said so.
My needs as a human, as his wife, are less important to him to even hear, than is it for him to complete the next level of "Prof Layton" on his DS.
That's brain cancer.

There's no way to stop the pain or hold it off. It's coming.

I'm down this week to less than 6 hours of sleep a night. No naps for Tashi. No respite.

I feel like the glamour is slipping; the cracks show. I have to be the one to suck up every insult he throws and clean up after every mess.
Saturday I spent trying to clean up after Wash had ----------- doesn't even matter. 4 hours of laundry "fun" time.

It just all hurts.
I can't even take the time to cry or mourn. I don't have time to myself. It's always for Wash. He needs me and there is just no one else here to carry him for me.

I don't want to remember today. I'm thinking of our anniversary date from 03-14-2010. That was a happier time with my husband, even counting the pain I was in post surgery. I'll take the physical pain of being ripped open for emergency internal surgery over the emotional pain of a day like today, or this last week of seeing what brain cancer has done to the man who is still married to me.

I watched my grandfather decline and go from Alzheimer's. I watched my grandmother deal with that pain. I had many a late late night conversation with her after grandpa passed (a benefit of our bedrooms sharing a wall) about her being ready to "go join him".
I don't blame her one bit. I am happy for every moment I had with her, but I know those last three years she was just waiting to die. I hope she had more than a few happy memories in the 3 years she was widowed.
I'm starting to get it now.

I was not expecting this for 40 years. I was not wanting this direction for my life.
Cancer doesn't care what you want, what you dream, what you hope.
It just eats and kills.

I'm still not ready to say "Good-Bye" and I think I'm too late now. I worry so much that my love, my husband is already "gone".

Brain cancer is an evil I wish on no human. NO ONE.

**I am aware he "tried" this week. But he admitted he did not do his best, or even his full effort. He said he totally just half-assed the whole thing. Do I praise him as one would a child, giving him lauds for effort if not completion? That way lies the end of being "married"- he would no longer be a man, but in fact, a child in a mature body. Or, do I hold the part that is left to some account?- He admitted he could have done more, he just was literally too lazy/too self concerned to do it.
Every option comes with its own pain.
All I wanted was just a vegetarian dinner I would not have to cook or clean after.
I ended up cleaning, and doing a portion of the work anyway.

Being the Adult is tiring. Being the one legally responsible for another grown human is so, so tiring.

Wednesday, February 8, 2012

Stirring the pot


The last day (ish) has been quite... interesting.

Wash on Tues had a bad health day, he was having some reactions to his med change. I spent quite a few hours with him trying to distract his pain and discomfort. The upside is these are all very short term side effects so he today feels almost back to his 'normal'.

On Tuesday I was informed that AHCCCS Oversight Dept had been made aware of our issue/situation and would be looking into it. I did not get any real human contact information from the communication. I'm hoping this means someone with power is looking into how William "Bob" Jaegers dropped the ball on our case, and lied. I have no problem using this man's real name. If he wanted to work in a job where he did not actually have to work, there are options. But, not doing his job when people's health and lives are directly impacted is unexcuseable.

In slightly better news, Tues I also heard from someone at the Constituent Services dept of the AZ Legislature. She asked for more information to actually look into our case and I'm having my Social Worker from Hospice help me out there. I think he might also appreciate the chance to ask why (as a Hospice SW) he was blown off by our casemanager Bob Jaegers for two weeks.

ALTCS sent a nurse over to ask Wash and myself some questions and spend about 30 minutes evaluating him. (Which, if you read here at all Wash is very good at covering up his issues for even 2 hours at a time. 30 mins gives no real view as to our lives or issues at all.) She said that he does not outright qualify for ALTCS care but every case that does not immediately qualify gets a medical review. Only one doctor on the review needs to say he does need the care and he's approved. For now, I am hopeful.
It will be a few more days before I know anything about Wash's case. Again though, I'm hopeful.

However, I will not be dropping this issue, or trying to pull it from public eye. No one has yet apologized for the wait, or for lying, or the potential cost in Quality of Life to my husband. I know we are not the only family in Arizona to go through this with ALTCS. I'm beginning to believe as well that if they are careless enough to leave evidence of their lies and harmful policies of us around, there is a lot of evidence that they have harmed others too.
This is a Government run insurance company. They are funded, even partly, from tax dollars. They are require to have Oversight, and they are publicly to be held accountable.

To all who have called, emailed, and faxed on our behalf - I truly thank you. I'm truly saddened that I live in a place where it requires this type of effort and luck to get the care my husband qualifies and is entitled to- not just as a taxpayer and former earner, but as a human being. I believe every human is entitled to healthcare and services as a basic human right. Not even those who would deny that care to others, like my husband or myself, can change my mind. Every human.

Monday, February 6, 2012

Step Up, Arizona, or be Shamed

If you are willing and able, please share this around. Please help me get the message out to those who can help Wash.

6 Feb 2012

To Whom it May Concern,

I am writing to you about two of your constituents in Arizona; S Tashi Pratt-King and Kevin "Wash" Pratt-King. The live in Tempe, Arizona and they need your help- today.

Kevin and Tashi married in the spring of 2009- and within weeks Kevin was sick from an un-diagnosed brain tumor. Tashi had applied for AHCCCS medical coverage throughout the summer and fall of 2009, denied every time. On Tashi's 23rd birthday Kevin had a grand-mal seizure and his tumor was finally discovered at St. Joseph's Hospital in Phoenix, AZ.
His tumor was 9cm- almost as large as a newborn's head. It took two surgeries to remove the tumor and shortly after the couple found out it was malignant and terminal. Kevin was just 25 years old.
After the surgeries they were both approved for AHCCCS coverage, but that would be the start of the insurance issues.
For the past two plus years Tashi has been working full-time as Kevin's non-compensated caregiver. He is not able to be independent anymore and from the start needed full-time care. AHCCCS does not cover the costs of full-time care, so Tashi has been working literally a 24 hour, 7 day a week job caring for him. She does not bring in any income. Kevin receives a small monthly stipend from Disability, it does not begin to cover his real medical costs.
The "Life expectancy" for Kevin's cancer (Glioblastoma Multiforme) is 9-12 months-with treatment. He's at month 27 now.
Brain cancer has several predictable side effects; seizures are common, depression, memory loss, aphasia, blindness, weakness, and severe fatigue. Kevin has all of them. As hard as he has been fighting to live the last two years, he is degrading. The level of care he needs is more than one person can take on around the clock.
In January of 2012 Kevin applied for Hospice Care. This was to go hand-in-hand with his coverage by ALTCS; the Arizona Long Term Care Services, through AHCCCS. Kevin's ALTCS approval letter came in Dec of 2011. This would allow for Respite Care to be provided to Tashi, who has spent the last two years doing nothing but caring for her dying husband. ALTCS covers the long-term-care that his primary insurance, AHCCCS does not.
In January of 2012 Kevin and Tashi were notified through Hospice (never a direct contact from AHCCCS to the couple) that Kevin in fact was NOT covered for ALTCS care, and even with his continued mental and physical degradation, Tashi would still be left to bear all the care.
Kevin's Social Worker (through Hospice) spent more than 2 straight weeks in January trying to get in contact with William "Bob" Jaegers - the caseworker assigned to Kevin's ALTCS case. Bob did not respond until today, Feb 6th.
Two weeks to contact a Social Worker for Hospice (End of Life) is not acceptable for ANY level of healthcare work- unless ALTCS hoped by delaying Kevin's case, he would die before any monies would have to be spent on his care.
Bob confirmed to Tashi that it would be 45 days from "start of application" to have ALTCS approval. When Tashi responded she had proof of Kevin's acceptance as of Dec 2011, Bob flatly denied such 'evidence' could exist and their records showed Kevin applying in Jan 2012.

Please help take immediate action on behalf of Kevin and Tashi. They have evidence (see attached) showing approval of Kevin into the ALTCS program as of Dec 9th, 2011.
Kevin is dying. He is only 27, but with a very virulent brain cancer. Tashi is 25 now. She has not had a "day off" or "weekend" in more than 2 years.
I write to ask you to investigate this matter; or shall we be left with the assumption that in Arizona if you are young, poor, or terminally ill that the State will leave you to die without medical coverage?

Thank you,

S Tashi Pratt-King

(The last paragraph of the letter? "Approved for ALTCS")

If anyone has media contacts, please share.


I've gone out to do a lot of errands in the last few days.
That means I've been around people and children.

I woke up this morning from a horrid dream to go vomit in the bathroom for a while.

And after getting off the phone with Wash's insurance I understand. I'll have another post later today.
For now, I must off to slay some Insurance Dragons.

Friday, February 3, 2012


Well, we have internet and cable back on at home now, hurrah! Wash has entertainment again- honestly I don't understand it but he says he's tired of watching "Hot Fuzz" and "The Big Lebowski" with me this week. I put on a new commentary each time! (Thank you for the movies on Blu-Ray, for both of us they are a nice transportation away from real life)

Wash has had about 4 new meds added this week; I've been spending a lot more time watching him and dealing with the short term side effects. I've wanted to write and it's frustrating that my own personal time has shrunk back to none this week. Wash just needs so much care and attention right now, and we (us and our SW) still have not heard back from the insurance about Wash's ALTECS care. (Who pay/cover respite care and such so I can do the things that need to be done outside of the house etc) It's frustrating.

The good (ish) news is that being treated like this, ignored on a human level, it fills me. It stokes a fiery place in my heart that fills for Justice and Righteousness. It makes me feel like there might be a purpose for me in the world after all; I don't think I am ever going to go back to finish my degree in Forensic Anthropology; Oesteology. Every skull is my husbands'. Every face I have to glue back together is his. It's fucked with me too much.
I don't think medicine is my thing. Taking care of my husband is different; it's necessary. I have never wanted to work with/on living patients, I still don't. I admire like hell the people who do- so far all but one person on my husband's team in the last two plus years has been a godssend. They have been kind, concerned, caring, and dedicated. His nurses, his technicians, his pharmacy group, his doctors- from his Primary to his Oncologist. They show over and over how he is a person, not a disease. If you are involved in the medical field, we might not always say it, but for everything you do for us patients, Thank You.

For me, I feel like I am becoming more of an - activist. Someone who speaks for those who cannot. Someone who works to change public opinion and policy. Someone who can work inside and with the law to change it if needed.
I can try to be a Poverty Interrupter.
A Healthcare Activist.
A spokeswoman for Human Rights.

I'm feeling more Hope for myself when his end comes. I'm starting to be able to be in a place mentally to allow myself to think about the real future; the one without him, where I am still alive. The one where I'm a widow, but I'm living. It's hard and so gorram painful to think, but for the first time since we were told in 2009 he was dying, I can think about what might happen to me after he does.
I want to be the change. I want to help make sure no one else so young like us has to face this. I want to move the country away from having to have thoughts like, "Pay for Food or Medicine?"

My garden continues to come along well. The flowers have all settled in since transplant and the bulbs have almost all come up too. The scent is so lovely. The peas and beans continue to grow by inches every day and I'm harvesting a cherry tomato or three about twice a week. The garlic grows, the rosemary thrives, and the carrots are coming in too.
I decided to treat myself and instead of putting a few dollars away for something I need (I do that all the time. Too much really, but I always put Wash ahead now) that I would grab what I spotted on clearance at Target and got some solar powered string lights for the backyard. We have 12 solar stake lights around the back and garden currently, but nothing to give depth to the fence/border of the back. I'm honestly quite excited and happy with it- the design is pretty and I like making the back into a real happy and comfortable space for us to spend time in. The weather will not hold out more than maybe 2, 3 more months so I have to make the most.

I will lastly just relate our story of being good humans and neighbours; we wanted to go for a walk to the post office yesterday and discovered left on the sidewalk by our yard/Church parking lot was a baggie left with pills. Also a few half drunk Bud Light bottles. We called the local police - it was next to a Church and across from a house with a lot of small children living there- the pills needed to be taken or disposed properly. It only took about 15 mins to have an officer come out and he did a field test on the pills (3 different kinds, about 6 pills and one crushed one) and to everyone's shock- they were all blood pressure control pills! 3 different scripts, but all for blood pressure. How odd! Wash says he wants to write a short story about the pills or something, as it is just so... odd. I guess in this instance someone did really lose their pills!

The officer took them to be destroyed back at the station and we went on with our walk, less fearful for the safety of the local kids now.
Never really a "boring" day here, something always happens.

As someone directly effected by cancer of course I have thoughts on the whole Susan G Komen shitpuddle. But, my friend Lara who lost her mother to breast cancer, and has been fighting it herself has much more weight and connection to this than I. I will ask that if you want another voice on the direct negative impact SGK has caused this week by denouncing Planned Parenthood and ending funding, please hear her voice.

Wednesday, February 1, 2012

Internet is disconnected again friends, sorry. Will be in touch soon whenever we can set up a payment. Try the mobile to reach direct.