Into the Open Air

Wash had a good Sunday; saw his friends N & T, watched "Blink", ate well.

He informed me around midnight he felt he was going to pass shortly.

He asked me to put on the finale of last seasons' Dr Who; The Wedding of River Song.

He fell into unconsciousness before the end of the episode, around 3am.

His last moments aware were of being loved, seeing a show that made him so HAPPY, and knowing he was going to be going off on his own adventures soon in his own TARDIS.

He is in a Hospice Home now where he can have the best quality End of Life.

Thank you all for your thoughts, prayers, wishes, hopes, messages, support, and love.

We could not have made it this far without all our friends acting as Browncoats to carry us through these trials.

My Wash's next adventure will start soon.

Foot info

So, some good news from all of this is that we do have extra help, ALTCS [part of Wash's AHCCCS insurance] is covering 8 hours per day for at least a full week, and depending on how I'm doing and what my doc says by the end of the week it could go on, he has the option then for Respite care outside our home, or I might be able to go back to doing most things by myself. Not really sure at this moment, but I made myself and Wash promise not to talk about that until after his birthday, just so I can get through the next few days with less distractions.

I did hear back from my doctor yesterday. She sent my x-rays off to a separate radiologist to check it out. My break is an abnormal one, an incomplete fracture of my 5th metatarsal on the right foot. The swelling continues each day even though I have a "soft cast" wrapping on it for the weekend. My ankle is also turning purple/black. My lovely blue iris foot tattoo is all misshapen from the swelling and miscoloured from the bruising.

It hurts, but the doctors are right and it won't heal if I don't keep to my bedrest and stay off it.

My left foot is still technically "broken". I broke it 3 weeks ago, and tried to push it this week, like I was back to normal. I tried to do too much, carry too much weight, make too many trips in one. So, I guess I should not be that surprised that my left foot gave way under all that stress; my foot gave out and I fell with all my weight and the trash on top of my right onto my right side foot hitting the concrete sidewalk.

I'm quite happy that I had a follow up already scheduled this week, so I got to go right in and have my doc give me x-rays instead of a more expensive and long ER trip. Wash was worried and did want me to go to the ER, but it was about 6pm and there was no one to look after him. My doc says seeing me before 24 hours was up was just fine, and as it was not a compound fracture I did not do any additional damage by waiting a few more hours to see my own doc to check my foot.

So, since it is broken, I will have a harder "cast" type of thing put on my foot and I'll have a 'walking cast' type boot [DAS BOOT] to use with my crutches for at least 4 weeks. Knowing my history and my doctors, they might tell me 6 weeks to make sure I don't break anything else/re-break it.

I have a follow up x-ray at 3 weeks to check the healing and make sure it's correcting on it's own/ that I won't need surgery. At this point, it does not look like I will need any surgery, but the doctor can't guarantee it, and a part is on me to make sure I am being medically compliant.

Wash did most of Helm's Deep LEGO set this week, and I did an Orc/ Uruk-Hai kit last night to complete it. He's out of "new"/un-built sets right now, so I'm not sure if he will be playing with them, mixing the LEGO sets with his Warhammer 40K stuff, or if he'll disassemble it to rebuild.

I had my mum get him the 6th Ed Rulebook for Warhammer that came out this summer for his birthday.

There is something I want to get him, but it's going to be complicated to do without getting out of the house. Maybe I'll have a chance Sunday before his birthday. I am not certain yet if we're having some friends over tomorrow. We're doing Tacos on Monday though for his birthday. It will be a nice low-key thing with my family.

I'm including pics of my feet because I'm weird like that and I like to share my pain.

That's about all I can remember for now. Thank you all Dear Readers, for being so kind and supportive during this. My own brain is guilting me up bad, but my brain can suck it sometimes. I'm doing my best giving him care 7 days a week (outside of my 9 hours per week as "break") and I my body can only give so much for so long before it tells me to slow down.

I'm off my feet. I'm slowed.

Eye of the Storm

Wash had some severe pain this morning.

Literally screaming, waking me up.

Hospice had his nurse talk to us and he got pain meds. They did help. He had almost a full breakfast and a snack.

The nurse checked in again this afternoon. It could be a side effect of one of his meds, but perhaps not likely as nothing has changed in about 2 weeks.

He had more pain medication in the afternoon when he started feeling the stabbing in his joints again.

He's been asleep now for about 2 hours. He said he was feeling (after meds) "I don't hurt, I feel warm and fluffy."

Aephie is catloafed at Wash's feet on the bed. She and Leto have been taking turns today guarding him.

I'm going to try and get a short nap in today. I have a horrid feeling I might not get much sleep tonight.

He had to put the LEGO building on hold for a little while, moving for him hurt too much.

Hospice is being great right now.

I am very, very tired.

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

Bilbo's hiding from the ProudFoots'

So much stress and drama for days.

Tears.

Late night Hospice visits from nurses.

Thankfully Andy* and Lynn* have been around a TON this past week, outside their own stuff to help both of us. Errands, movies, laughs, from the little to the big. It's vital to have those friends who will be there for you. Like making a commitment to Wash and then keeping it. For months/years. He needs that in his life (outside just me) and at least we have close friends who can fill that need.

Same with being respected. A patient says, "I can't do this", it's best not to question. Unless you are the patients' doctor.

I've met some awesome Hospice workers this week. I'm very thankful for that.

Wash has asked me to keep specific things out of public for right now.

I'm glad for friends at times like these.

//

*Not their real names

Union Mandated Break

So, for now, my garden is "done". [Maybe one more veggie or light set...]

I planted all the summer flowers and pulled up the winter bulbs to store away 'til Oct. I have new pepper varieties, new tomatoes, strawberries, herbs.... I have a little solar light turtle, and glass water bulbs to go in some containers. There is new bright colours ALL OVER the back garden. I also got new solar lights on the umbrella, so at night it looks like stars! I got rid of the trash (except the bikes, I want to donate those) and put in new lights around where the wild mint is growing. I'll put pics up after Wash sees it on the off chance he's checking my blog from his Hospice library.

I already cleaned the kitchen and fridge and I'm purposely not cleaning the living room or office. The bedroom is about the same. I'm doing MY laundry so it's done.

I have breakfast leftover, and my friend is taking brunch to Wash in a half hour.

I slept about 7 hours last night, but I'll have a chance for a nap before we get Wash this afternoon.

Time for one more Harry Potter, I think.

I had a good chance to get some rest, to get some things done, to clean, to laugh, to treat myself.

I had my nails done with one of my best girl-friends. I got to have a LONG phone conversation with an old friend. I got to sleep on the whole bed.

I missed Wash, to be sure. A lot. Perhaps not as much as Leto... that cat pretty much has stayed 4 days waiting at the front door for Wash to come home.

I will need more time again, this I know. I will need more rest.

I needed this break though. I needed the time to stay sane, to come back out of depression and Sneaky-Hate-Spiral.

I perhaps don't feel "happy" per se, but I no longer feel vast emptiness. I can see Hope again. I can see myself alive and as an independent person after Wash dies, for I think the first time.

I also feel stronger to be kinder and patient. I needed that.

This was a good thing.

Gentleman Caller

Wash is settled in at the Hospice Home for the next little bit. He got a nap in and told me his first meal there was a burrito and rice. He seems upbeat. I feel a lot better, but still miss him in a way that calls me back to his first few days in the hospital and when I was dragged back home to rest.

So it's just me home now, with the kitties and a 5 gallon bottle of water mis-delivered to me today.

I lived alone from 17-22. Never had a roommate as an adult. Wash was the first person I lived with outside my family. It feels odd, and I can remember so many details from that time, when it was just me (and then Aelphie).

I'm also just having it sink in that it can be about ME for right now. There are others to worry and care for Wash. To help him. To calm him. To make him happy, right now. The now can be about me, for the first time in far far too long as a human.

I'm going to pick some clothes tomorrow, new clothes and not from a donation store.

I have no obligations for Sunday, for the first time in as long as I can recall. Years.

I will wake for me; not for or because of someone else. (Unless the kitties get REAL hungry and loud!)

I can have silence if I want.

My fridge has no meat in it for the first time in a long long long time. I'm beyond happy.

There's a part of me that misses him and thinks of him every second, what he might be doing, thinking, needing- if he is missing me too?

I know rationally he will be fine, and he can contact me if something is amiss.

With time and distractions I think that part will quiet down on it's own, not with my work.

I will have time for me, where it is ok and safe to be "selfish". At least until Monday.

It's been 7 hours since I've seen or touched him. I need to sleep, to relax, to calm down, to emote.

I have my family, friends, and kitties to help.

"Everything will work out in the end; if it has not worked out, it's not the End." - Best Marigold Hotel

The in-between

All things staying the same, Wash will go into a Hospice Respite home/facility Fri (tomorrow) morning through Monday afternoon, planned.

I am too numb, scared, tired, relieved, and nervous to process more than that.

My mother and I toured the facility today, it was very nice and should meet his needs, if not all his desires.

I have a list, but I cannot pack his things yet. I'm not ready. A few more hours won't matter.

Rationally, I know this is the right thing to do for us both, however much it emotionally hurts to be away.

Where do we go from here? Kumbayaya Remix

Friday was a long day. Lots of shit from Wash, and very very little sleep for me.

Then he woke me up every 2 hours.

I made some desperate calls and my mum agreed to watch Wash for the day so I could rest. He did not fully understand that, so for the first while was just angry at me that I was "abandoning" him again.

He came home after 8 hours away and right as soon as my mum left, began to be nasty to me again.

I had gotten one good nap in and a bunch of chores. Not in the best mood to deal with his crap, piling on me.

I called Hospice and let them know what was going on.

After about 2 hours of him being pissed and me doing laundry upstairs, he had some medical cannabis and calmed the frak right down and even apologized.

He went from, "I want to sleep on the couch and even if it's my last night alive I would not change anything!" to "I'm so sorry. Can we please cuddle?"

He's still asleep right now (2 extra hours for him) after passing out after 3am, myself after 4.

I'm expecting the Hospice Nursing team to be here before noon. We'll talk about medication changes and options for Wash to go away to a Hospice Palliative Home for a few days so I really can rest and get some things done around here.

I'm scared. I'm afraid to go another day with the person who wears the skin of the man I love; it's literally a stranger in my husband's body. I'm afraid to go a day without him. I'm scared of him dying away from home, away from me.

I'm scared if he leaves, will he remember me when he comes home? Will he remember home?

Brain cancer is g-dsdamn awful.

Crashing out

Dying is not cheap.

Just got the MediCare copy of Wash's bills since he started Hospice (We have at most a $5 out of pocket co-pay for some things, Hospice bills MediCare directly for the rest)

So, I've shelled out about $1000.00 in out of pocket/uncovered expenses for Wash's meds per month.

Of the covered /paid by insurance stuff;

From mid January when he went on service to end of April, MediCare has now paid $21,210.42 for Hospice services.

Even dying at home with Palliative care ain't cheap.

/Yes, I'm glad we're 95% covered, but it's still amazing.

The Note

Family and Friends,

It's been a little bit since the last real update on Kevin past his entering into Home Hospice Care this January.

It's been a rough few months with many new challenges, but also quite a few wonderful moments, new memories for us both, and a wonderful outpouring of "geek" support for my beloved Browncoat.

Kevin is having a lot more issues right now, which is the nature and course of his disease. Before he went into Hospice service this year he had made it well known he was not interested in more chemotherapy when his brain tumor(s) came back; he wanted the best and happiest quality of life he could have for as long as he could have it. I have done my best to honour his wishes and with some wonderful support from around the world, I have been able to keep him at home and mostly comfortable. He does not consider this to be "giving up" or "not fighting"; he is working with his grief towards acceptance of the end course of his disease. Please know that the intent of this message is only to give you the opportunity to get some closure both for Kevin and for yourself. To give you the knowledge and awareness that despite our best efforts, an immense amount of prayers and well wishes, the love and support of our family and friends, and the best advances that medical science has to offer, he is not going to get "better".

We are losing Kevin, day by day, and the course is set and tragically unchangeable. I would have you know that, and have the choice about how you would like to handle saying your goodbyes. We also want to pass along that the window for saying your goodbyes is starting to close more quickly now so if you wish to visit or call or write, you should immediately start making those plans. Since stimulation has a direct line to his exhaustion and fatigue please take directly to me if you are out of State and would like a longer visit (over a period of a few days).

I am asking those who are local to try if you can to come for a day/evening visit or even a phone/Skype call. He is still able to enjoy things, and his personality still shines through on most days; but he is having more days where he does lose "himself". This is common with brain injuries/cancer. He may recall you and every detail from the last time you were together, but also be aware he may not really recognize you or how much time has passed between events. If he is not upset over this, or seems to be in a time period from when he was younger, that again is just part of his disease. For now we suggest day/evening visits be kept to 1 hour or less, unless details have been discussed with me prior. Some days he may like to go out for burgers, or to see a movie - and he has a wheelchair if he needs it on those days, and others he may just enjoy a short game or talk at home.

I will do my best to address any questions you might have.We both thank everyone for the continued kind thoughts, wishes, and prayers.

Tashi Pratt-King

Please visit www.savewash.com for more information on Kevin and Glioblastoma Multiforme brain cancer.

Summations

And THERE is it. 2 plus hours into a not-fun-at-all talk this morning, continuing from last night, and Wash has said it out loud, again.
"Because I need to DO SOMETHING, MAKE SOMETHING of value, or why else stay alive? I'm worthless just existing."

He truly feels, believes, and was told from a young age on, if he cannot be "productive" in society, he should just die. [Why yes, he did read a lot of Ayn Rand]

He's already spoken to Hospice about this before, and his Chaplain and Social Worker, and Therapist have all said that is not true, but he really fucking believes that if he cannot work and get a paycheque, he should just fucking die already.

I told him earlier the least he could do today was to be honest to himself and us around him.

He's been so verbally abusive today.

Brain cancer can suck on Sideshow Boob.

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So we had some nurses come over this afternoon and talk to Wash, and he spoke very honestly about his suicidal thoughts and wishes, but was able to say he would be "safe" for the next day and not an immediate danger to himself.
The nurses adjusted his meds, and had a social worker come over after they left; she talked for about an hour with him. She was able to figure out he was triggered into this most recent cycle when he was on the computer last night and saw a little side-ad for architecture college degrees.
So, we talked of a few ways to help when he was triggered, and how to distract him from the self-harming or suicidal thoughts.

Our friend N. is coming over to take him to a burger place for dinner, and my brother is coming over the evening to help me watch and distract him. I still want someone to sleep over with us tonight though, and someone in the morning.

So.
Hospice rocks, cancer sucks, and this is emotionally draining. Also, my intestines hurt again.

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Wash has said he is ok with me posting these portions of my more private entries from the last day.

He wants people to see what it is like.

He wants others to know what happens, physically and mentally.

Even in his most trying times, he wants to be an example, and it breaks my heart he cannot see what an effect he has had.

Mini-reflections

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; http://troubleblogging.blogspot.com/ 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

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.

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.