Hey, Jude

I ended up calling and talking to a Hospice Nurse (on call) for a while around midnight/1am.

He's been in a fairly ok mood lately, but severe short term memory loss. Things happen and his brain just fills it in however he can. He's almost incapable of asking for help now.

He's been eating less and less for the past couple of days. Seems about 3 snack sized "meals". He likes to eat breakfast still; but I honestly wonder if that is not because it is ingrained into his routine; "I have to take pills, I have to wash my face, I have to eat" type of stuff.

I have a lot of good tasty stuff he still can/likes to eat around here. There are healthy things too, but, with what is going on and the Nurse's advice, I'm no longer pushing or reminding him to eat.

It's his body. He is just taking less and less more in.

He spends a lot of time with LEGO sets now, movies, and he's trying very hard to finish a Cherie Priest book. I don't push him or remind him about naps anymore (he had one before TDKR, but I wanted to make sure he'd be awake for the whole movie) and I need to extend that to his food too.

He hasn't been "out" for a walk (longer than front door to mailbox) in a few weeks. He's not strictly bedbound yet, he can still move around some, but he says there is less each day to wake and fight for.

August 6th is his birthday. I know he wants to live long enough to see 28 years.

This part is so hard. Letting go.

I've spent 34/35 some odd months working to keep him alive and happy, and now, my focus has to just be his happiness at the end.

Hospice P. is coming over this afternoon, I've asked him to help Wash dis-assemble his large 4" (diam) telescope so we have more room downstairs for him. After that they can work on Helms Deep for LOTR LEGO.

Thank you to everyone who has been sending us postcards, LEGOs for Wash, and kind thoughts and prayers. Thank you to the few people who have been in shoes very much like mine who have reached out. My heart aches you know this pain as well, but I see the kindness in reaching out to remind me I'm not alone. Thank you.

We got rain yesterday. The kitties were happy. Aelphie has been like superglue next to me over the last few days, and Leto too has been making sure he's not more than a metre away from Wash at any one time. I think they know something is off. Lots more cuddles and more cat hair on everything. Worth it.

I spent three days fixing my filter pump in the big fish tank, then those 3 days spent cleaning out the tank over and over from all the algae growth, the dead fish (2 died. I have not told Wash and he has not noticed.) and the gunk that built up from the pump not working.

Thankfully for now I did not have to buy a new pump, only disassemble it and clean it.

However, sadly, I did have to get a new light-block after ours locked into the "on" setting and would not stop flickering. So, clean tank and new lights for the fish. I keep the decorations for the tank on a rotation so when they get dirty, I have clean ones ready to go and can dry/clean the rest in our hot direct sun.

I also cleaned out the baby tank and transferred over the 3 living fry from the baby "pot" to the fry tank. 2 of them were up and swimming, the 3rd not so much. With fry though, they can be tricky, so I won't think it's dead until I observe it not moving for a full day or being eaten.

Fish-keeping helps my mind sometimes. I'm not getting more, just replacing the few that died, so my school doesn't shrink and die off even more.

Hour by hour, I'm trying.

I'm hoping he will be feeling well enough this week to Skype with some friends and cousins. He's wanted to for a while, but gets too tired before I get the chance to set it up.

One, two, Princes

I've been dealing with my depression lately.

Wash is not strictly "declining", but, it truly does to me seem like there is "less" for him to live for. He's fighting, but for what? At this point he says he wants to still see TDKR. He wanted to see "The Hobbit", but I think the trailer is really honestly all he will be around for.

Brain cancer is so odd. He can complete two LEGO sets in a day, or in two weeks. His brain can still build, but a lot of the other stuff is starting to go.

I have not gotten to the point of bibs yet, but he's essentially using an "adult" sippy cup. His sense of co-ordination is worse even than mine. Thankfully no falls lately, but he's had to be better about using his cane or walker for EVERYTHING.

It helps though.

Our awesome neighbours continue to be awesome. A couple of times when Wash has had an aide over I've gone to just chat or vent at their place. (they are in the same row of townhomes we are) N.* has even traded short stories with Wash to read! She still helps us water our garden and cooks occasionally for us.

He mostly says/does the same thing over and over now. We watch the same show or movie 2, sometimes 4 times before he "remembers" he has seen it before.

"Yes, dear. Thank you. Ok, Wash. Yes. Do go on."

His anger comes in longer periods now too. Sunday night was fairly awful. Even after speaking to a Hospice Chaplain on call, it took almost 2 hours for him to really get a hold on his own emotions.

I dislike feeling what I have been lately. I worry way too much. I wonder if/how happy he is.

I worry about his rage, his pain.

I wonder if the thing I wanted most with my heart on my birthday almost three years ago is something I have to let go of now. I want him to be living because he wants to, not "for me". It's much harder to say that out loud though, than merely to write down.

He's going to attempt to see and talk to his mum this week. I don't speak of his family on the blog anymore at Wash's specific request; he doesn't want some details "out" right now, he still doesn't want to share/show his emotions.

All I can say, all I will say, is please Dearest Readers, send him thoughts of love, calmness, or even kind prayers.

Mostly what he does is say he wants to do something, but with his "drama", it is like there is a block preventing him from ever moving forward.

What I want for that situation does not really matter. I want what is best for him, what his mental and emotional well being needs. Not what someone else might want for him.

Done. Moving on.

So, when he is not taking anger out on me, he's been enjoying some time with his aides and building and filling our home with LEGO models. The cats do not seem to mind, and he really enjoys playing after he builds, it's nice when a couple hours go by and everyone is happy.

I've been trying to take some "mental health" breaks for myself as well, actually get out of the house when I have an aide to help/watch Wash. I know there is worry for me after he is gone. I worry about myself; enough to worry but not yet enough to do much more than starting to see I'll be ok if I leave him for an hour with an aide.

The future is still too painful to think about. The 'What After' part.

I've seen Death. Changes happen to a person.

I'm wondering if it's just brain cancer, or if some of Wash's changes are him moving closer to his end?

So many questions, so much wonder, so little certainty.

To some specific people who have been reaching out to me- thank you. Thank you for telling me I'm not alone in this. Some nights and early mornings it does feel so isolating, but I do try to take comfort from those who have gone before.

The very worst thing to me about GBM? Even more so than knowing at some point I will lose the man I loved and hoped to spend the rest of my life with, is knowing there is still no cure, and there *will* be others who come after who have to fight the same battles. The ACA changes some of that for those Americans with brain cancer, but these tumors hit people around the world, not just here.

I feel like I'm the only one, but at the same time, I hate knowing I'm not.

I would not wish this even on Jan Brewer.

There's a feeling of change in the air; friends all moving, new jobs, new schools, new children/life in the world.

I feel like we are the only ones stuck still while everyone else moves and dances their lives around us.

His birthday is in two weeks. I know (or is it hope?) he makes it that far. Live hour by (hopefully a good) hour, day by day that he wakes up for, and week. At this point, I'm not sure how to think or live farther ahead than that.

/Trying to write my depressive thoughts out of myself today. I hope it works.

*Not real names/initials

Fluffy Days

So much to do today, I don't have much time for an update.

Someone from the long-term care side of Wash's main insurance; AHCCCS is coming over today for another medical evaluation. Sadly our social worker can't come til tomorrow to explain things, but I am just going to write down every question that I have today with the new 'case manager'. I got some paperwork from ALTCS a day ago (finally!) but it is 9 pages of financial reports that I just do not comprehend. I cannot tell if we were approved or denied again! At least they were correct with our reported income; $26.00 in the bank. Hopefully the Social Worker will shed some light on the papers tomorrow.

Wash had an interesting day yesterday; He woke up very confused, was not certain really what day it was or the things he needed to do, even after looking at the schedule on the board I put up for him. He was just getting so mixed up and a little scared. I called our Hospice nurse, who spoke to him for a few minutes. Since he was not aggravated with his confusion this time, she asked us to check in again in a few hours, see how he was then. He was not angry at all, just a sad and confused.

My mum came over in the afternoon to help us on a couple errands, and Wash was feeling a bit better when we went out at first, but he was tired and dropping by the time we were done with the first thing. Poor guy. I had him sit down in a chair but he was still just so tired. I think I should have just put him in his wheelchair yesterday for going out.

We took him home and put him to bed while I went out to finish my errands as he slept.

He had a 2 hour plus nap and was a bit more lively when he woke, and a lot less confused at that point. I called the Hospice Nurse back, she spoke to Wash again and seemed to agree that resting did a good job of helping to "clear" his brain.

It was a busy day on top of taking care of him.

I'm doing my best to catch up on emails and such, I ask a little patience.

So, we have the entire afternoon blocked off for Wash's medical stuff and then recovery time for him, and then it's the last Shepard's Pie Tuesday for the "winter" so I am looking personally to my [step]dad's cooking tonight. He makes some wonderful vegetarian meals for me, and I love so much that he does it with love for me.

AND THEN comes Wednesday and my happiest hopeful moment of the week; my older brother is coming in from Japan! He's only in town for one night, as he was hired to fly some folks in for a Spring Training game and fly out tomorrow, but I am so excited to see my brother! He's about 12 years older than me, so we are not *super* close, but he is my older brother, and I love him like I love every one of my siblings. {Step or bio}

I want to also take even a minute and just write out a thank you to every single one of you. Everyone that has stopped by and read my words, or heard Wash's wish, or spread our story, or felt moved to help in some way, thank you. It is every single one of you who gives me Hope for us as humans, who give me Hope that we as humans can in fact come together.

I will be hoping for a good day for us, a good day for Wash, and I honestly hope that every one of you, Dear Readers has something good in your day too.

I hope you know that you are loved, and thanked, and appreciated just as much as Wash and I feel today from all of you.

Civic Duties

Not a Bus Strike or brain cancer can keep Wash and myself from our Civic duty to VOTE.

If I don't participate in the Electoral process, how can I even think to voice outrage or support?

In other news, I have awesome friends. Some girl friends got together to get me a nice tea brewing set inside the mug (with lid!) AND- they got me motherfrakking compostable tea for it! This is how I know they know and love me; not only the tea, but they know I love gardening and got me tea that would serve me well after I drank it. I am in love with my MFCoAW.

Also, some friends of ours (Roseanna, Hi!) sent us the coolest gift set; soaps from the oldest apathocary shop in the US! Wash got a set of soaps that former Presidents used! (scent wise, not a old used bar.) So, he can now smell like Washington, Ike, or Kennedy! I am fascinated by the history of it, and the scents are really nice too! Wash is adoring the idea that he smells like a former President.

We are both excited for tomorrow. 3 years married. Considering everything we have overcome together, I think it is amazing. Some days I feel like we have packed 3 decades into 3 years, then again, we have to.

Wash is getting some help in the afternoon to make dinner for us. I'm still hoping for some cool things in the mail for him, and still hoping on the off chance he will get a "Firefly" type congrats. A big part of why he has fought against this cancer (that he really can't "beat") has been for me. Much like everything that I do for him, for his smile, for a memory he can remember; he has fought to stay alive in part, for me.

He sees something so special and good in me, he has fought death to stay by my side this long.

I think that is a pretty special gift for any day, let alone our anniversary.

I'm a very lucky person, even on the bad days. I have still had 4 years together, 3 years married with the love of my life. With the other half of my soul. The person who resonates so deep within me that I will go through hell and back to have him even for one more day.

Frak cancer.

Frak brain cancer.

Frak tumors.

Frak chemo side effects.

Frak doctors who don't think he is worth "saving".

Frak insurance companies that think he is too expensive to keep alive.

Frak the drama.

Frak the bad nights and bad mornings.

Frak the tears.

For 3 years I have had the honor to be married to the person I love more than myself.

For 4 years I have known the man who changed me, and believes in me, and loves me.

It is bittersweet, but I am happy and thankful for every memory- happy or painful.

Happy almost Pi day, indeed.

Speak Friend and Enter

Wash said this about his gift from me on Saturday night;

"My wife's 'Leslie Knope' anniversary gift to me: A steakhouse dinner with friends and then an awesome adventure movie after. My inner Ron Swanson smiles."

I'm happy my husband is pleased. Yay!

I enjoyed highly my own little bridal/anniversary party.

Details and photos to come.

I think waking up today, feeling happy and loved, is something to celebrate.

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

School-Daze

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.

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.

Depths

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.

Pinata

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.

http://getupswinging.blogspot.com/2012/02/race-for-agenda.html

Radius

So far it does seem Wash's med change has helped him with his afternoon energy and his appetite. Sadly, it also seems that anything I say or that happens in the morning is taken as me "attacking" him and he's very rage filled and has very little emotional control.

Seems if he is left alone for a while though, he can mostly calm down, and the rage goes away by afternoon.

Still. We'll talk to his nurse Monday.

In good news after I gathered more than 30 pages of requested documents (at my time and expense of printer ink) to give to the Social Worker (SW) he battled against DES for us for a few more hours on Thursday.

DES-"So, our problem is that based on numbers their medical costs far exceed their reported income."

SW-"Yes, that IS the problem. That is why the need to continue with insurance coverage and the SNAP benefits."

DES-"But HOW are they paying their costs?"

SW-"They're NOT. That's the point! With coverage they can sometimes pay bills with donations and community support. If the coverage stays cancelled, they will be homeless to afford to pay for food and medication."

DES-"Ok, we understand that. But we'll need to do a financial check again in 6 months. Because we don't understand how they are paying bills. The income doesn't exceed expenses."

So, that for basically a few hours. The upside is that our SNAP benefits were back today, but I don't know if they are back-paying our funds or not.

The downside is that outside of getting assigned a name; "Dave"* , we have not moved forward with the ALTECS portion of insurance coverage yet. My paperwork shows that Wash has been enrolled in it since Dec 2011. They are trying to convince the SW that Wash is just now being enrolled and it "takes time". (Hospice Social Worker. Wash doesn't have that kind of "time".) The awesome SW will do battle again with them Monday. See, until he gets ALTECs we can't have insurance pay for Respite Care for Wash and me.

I'm still really keen on the idea of a suit against Arizona et all. I am thinking of trying to bill AHCCCS directly for the costs we've incurred since they fucked up our case. I truly think that is only fair.

At least the kitties have been cuddly and friendly this week.

And my garden continues to grow; tomatoes, peas, beans, strawberries. The garlic is coming up too. Half of the paper whites (flowers) have bloomed and the alyssum has taken over so the smell outside is so fragrant and calming. I try to spend 30-60 minutes out there every day.

Small things, but they make the difference when it's all you have.

*Not his real name

Hard work; I'm coming for you, Jan

So much going on and I've been trying to spend my free time with Wash, not really writing.

DES and our Insurance company is fucking with us again. I had to "renew" back in Dec and I had sent in all the documents they needed- by their own electronic system. Since there was no mailing address, no physical office they could say would accept my paperwork, and the fax number on my documents to them was given as "000-000-0000". Really, I could literally only submit these documents electronically. I have the confirmation they got the documents! (12-19-2011) So, now they are saying I never sent in anything. Liars.

They say Wash is not signed up for the "ALTECS" system (long term adult care) when I have a paper from the DES office dated 12/09/2011 that confirms he was in fact accepted into that program.

Today, they say they need copies of documents from 2010- 2 fucking years ago! Also, they HAVE these documents, as I sent those in back in 2010 and Wash would not have had coverage if I hadn't sent them in! Logic fail!

They have also made our Hospice Social Worker wait almost 3 hours for a meeting, then cancelled on him. I am beyond pissed at how we are being treated, but he tells me to stay calm and let them handle it. Wash is on Hospice, it's not like his cancer has been "cured"!

They've stopped our Food Stamps as well during this. The last funds I received for food was Dec 6th. Everything since about Christmas/New Years has been out of my own (empty) pockets. (Hospice is bringing us a food box tomorrow. I had so hoped I would never have to take another.)

I have saved every receipt from Dec on in a little pile. I have decided once we are back on with services, I'm going to sue. Most likely in small claims, but I'm taking DES and the State of Arizona, hell, Brewer too if I can (she might be protected from a suit while she's sitting in office, I'll have to check) to court. I'm past my breaking point. This is our Quality of Life that has been impacted in such a negative way. Today, I'm out for blood.

Plans within plans, my plans will put the Bene Gesserit to shame.

I feel like I am on the edge, tipping back and forth.

When I was growing up, starting to come into my teens, my , well, let's say "friends", they would say I was one bad relationship, one lost love away from destroying the world. I was only a "bad" accident away from being that "evil genius".

I think I get what they were saying back then now.

I am not able to cure this cancer. I'm not able to save my own love, my husband, my best friend.

But, I can be the change, the cause to make sure no one else has to suffer like we have.

If I set myself to it, I could change the whole face of healthcare in my State, perhaps further.

I have this voice in my head that tells me when Wash does go, it's going to be one of two things happening to me. I'll either fall into a depression that I will not be able to ever pull myself out from. Or.

Or.

Or I grow stronger. I find a sense of self and Justice and make that into reality. I take my papers, my writing, my voice and I make noise and actions until the Change happens.

We were both born in America. The country that only a few decades ago was the ideal for "making dreams come true".

We both live here, in the land of declared Democracy.

And he faces dying destitute for circumstances of merely being alive for 25 years before a tumor grew in his brain.

In America.

Land of the Free? No, not for us.

I can't fight the cancer in his brain, turning his healthy brain cells into cancer or mush. I can't fight that.

But I can fight the system that says his value is a defined number.

But I can sure as hell fight the system that says after two years if he's not dead they won't pay for any more help.

I will never forget the day a Judge in my own state, the state I have paid taxes on every job I have worked since I was about 16, told me Arizona could and would do NOTHING to help my husband live and to "move to Canada".

I love the Canadian country. I love my Canadian friends. Someday I would love to see their beautiful country... but I live in America. I'm an American citizen. So is my husband.

He should be able to live and die in the only country he has ever known, and wants to.

I am still quite tired. I could fall asleep and never wake.

But I don't think I will ever really rest until I know that others will not be hurt or punished in the way we have been. Being young and terminally ill should not be an excuse for the Government to forget and deny your existence, your Right to Live.

I have to fight.

I can't leave this one up to Hope. I can't just "hope" someone else will take responsibility. I can't just "hope" the people at the top of the Government- Jan Brewer- will do the 'Right' /Moral/Human Responsible thing. I can't just "hope" for policy to be changed.

It has to be me.

Get ready Arizona, the Gathering Storm is approaching.