It's all right with me

Reasons why I love my husband and his personality?

We're watching a program on some guys who designed a 'prison break' - and one of the convicts is a very heavyset man- compared to his fellow prisoners and most population. Wash is watching the re-enactments and says, "Wow, that guy should have been hitting the Yard more if he was planning on running with the rest of them." About half a minute later in the show the same guy is picked up as he was "too tired" to keep running.

I find it funny that he is still able to be snarky about a show.

The photo is from this Sunday. We had such a good day, it's one of those I will have to hold onto the memories.

I decided very spur of the moment Sunday morning we should have a pic-a-nic day. We got a pic-a-nic backback/kit for our anniversary last year and never had a chance to use it. Sunday was just lovely weather wise, so I said, "Let's go outside, we'll have a pic-a-nic in the park!"

To my happiness and surprise, Wash agreed.

I packed us ginger beer, cheeses (Wisconsin, and not from Koch bros either, natch) crackers, rosemary bread, salads for us, and some fruit. We brought books and games too.

The park was filled with others out enjoying the "spring" air; but the design of Tempe Town Lake is such that there is space for so many people, and you don't feel infringed upon- we felt very secure and private. The water was nice, and there were little kids everywhere on 3 wheels or training bikes. It was just a wonderful day to be a couple, to be people and not "cancer".

We had our friend come over in the evening- the boys replaced our old destroyed door-bell with a lovely new one (it's brass and glows) and cleaned our air-vents too. Then as the "reward" (ha, we love it too) we watched a few episodes of BSG .

For my mum's birthday this week we're going to the Sugar Bowl- it's a ice cream counter that's been around for more than 50 years- my mum used to go as a kid. Ever read "Family Circus"? The ice cream parlour, the pink one? That's based off the real life Sugar Bowl. I've even taken Wash a few times. It's a bit nostalgic, without being too reminiscent of the civil inequalities of the time.

Continuing my good news theme, I am officially covered for health insurance again- yay!- and we are back on the SNAP benefits (food stamps). Now we just have to get Wash squared away with his ALTECS stuff- they are the ones that pay for Respite care and cleaning and such, not Hospice. So, I wait, and let the SW do his job.

It was nice, Sunday. It was nice to pretend, even for just a few hours, like we were normal. Like we could enjoy a day out, putting aside worries. It does not happen often enough, but I have to make the most when it does. These are the memories I will want when he is gone.

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

Addendum

I keep thinking in my anger/rage right now about the people who are on the other end of the phone/office who don't care about Wash as a person, or helping do anything to keep him alive.

I'm getting so pissed I feel like making some Eugene Mirman esque wishes.

No, I do not wish cancer or ill health for these people.

Frankly, that's just too easy and kind.

No, the people right now denying insurance to my terminal husband? The ones trying to do anything they can, legal or not to kick him off his insurance? Here is my wish.

First, I wish for them to always be cut in line. Every time they get in a queue, try to join the Drive-Through lane, wait for movie tickets, place a bid online... For the rest of their lives they will always be cut. Someone will ALWAYS barge in, take the last spot, make them late for the show, take the first cab....

Second, I wish for their own personal body odor to change to the scent of cooked bacon. To some, it might seem delicious - at first. Slowly, the constant scent of cooked bacon will drive them insane. Either to eat more bacon, or never enjoy it again. I will leave to your imagination what will happen over the summers or when they want to go jogging... or if they have dogs at home.

That's my wish.

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.

Never have time

So, we managed to get out on a real proper date last night.

Hospice got us some tickets to the Symphony for this weekend- a violin concerto. Part of the agreement on my part of going out (most especially for a period of at least 3 hours for this) was that Wash uses his new wheelchair for this outing. And not bitch about being in the chair. (It's been causing some issues this week, more on that later)

To top that off Saturday morning I get a call from one of my really good friends from High School who knew the Conductor to the symphony- and she has made a call or two for us so we got to meet the Conductor before the performance! It was quite the experience. We also had our seats "upgraded" to the wheelchair area of the hall; it felt like the music was coming right at my ears, so lovely.

We ended up grabbing a couple sandwiches on the way home, and got to make use of the Light Rail's wheelchair access. We were out for just about 5 hours. Honestly, I think outside of spending the day at the hospital we have not been out of the house that long in maybe a year or more! Also, best as I can recall outside of our dinner out at Applebees, this would have been our first "date" since around April 2011. It was nice. We held hands for a large portion of the night.

I have also learned that his chair needs at least one pocket if not two and a cup holder for him. I also need to give myself a breathing treatment before I take him out in it up any hills. I do feel like I got my own exercise in last night. But, I think the point of the chair worked- we were out for 5 hours without him feeling tired, without him needing a nap, or to slow down for anything, he was able to be out and participate in society- the very thing it was designed for.

We've got a bit of a busy week coming up too, so it's a lot of pressure, but I am able to really feel hopeful over this time. As scared as I am, I have people around to at least offer me emotional support right now. I have needed, and I do need that.

Now we just need to have a small fund-drive to get some spare monies so Wash can "steam" up his chair.

-He's been talking to the Chaplain and Social Worker and they told me that it would be better for Wash to have me put the chair away as much as possible until he either got used to being in it or until he could really customize it to something he feels comfortable with and like it is his "own". My brother is willing to help him physically do some of the work (like painting the chair and helping to get a nice cover for the seat etc) - we're all trying to make this process easier for Wash. It's not an admittance that it is "the end", it is just about making full use of the tools, people, and programs that will give him a happier time at the end of his life.

I've been personally trying hard to cope with this, or to challenge myself to really identify what parts bother me so I don't hold feelings of negativity towards "Hospice" in general.

I have overall been encouraged and renewed by having Hospice in for this past week. It will take time for sure before I feel more rested, but right now I feel like I have someone in my corner to take over that fight when I can't, or when I have to put Wash first. I feel like they are allowing me to really put Wash first. Yes, emotionally it does hurt, but holding onto the good that they do and bring into our lives helps that pain.

Thank you all, Dear Readers, for your own words of encouragement and sharing your Hospice stories. They do help.

Ramsay makes a bollocks joke

Doing ok, stable for now.

I've been trying to let myself get used to the idea of a team to help, and actually letting others take over some of the work that I've literally given myself over to for two years.

The emotional stress though for this, is much much less than dealing with everything on my own.

I'm tired today, but a lot more hopeful for the two of us.

Hospice has even helped to give us a real fucking proper husband and wife date. I'm looking forward to that immensely.

Wash and I fell asleep last night to a production of "MacB---" (The Scottish Play)

I'm trying to remember the emotional pain is not "caused" by Hospice, but by the negative connotations most people have with that word. This is the best step for us both, as hard as it may be.

Chapter 3

So we have met the main people in Wash's "Hospice Team". They have been calm, polite, affirming, helpful, patient, and just wonderful to us.

Wash's wheelchair will be coming tomorrow so he can do outings without worrying about his energy levels. He's also got a massage scheduled tomorrow to help with his "pain management" side. We met 'our' Chaplain today and she'll be checking on him/us Friday. So far his nurse will be checking on him about twice a week and his social worker and chaplain once a week minimum. When they come back on Thurs we will talk about some other help during the week watching and caring for Wash so I can get rest and do errands and things.

His nurse is lovely and so far they seem to get along. His social worker will be working with us Thursday to try and help communicate with Wash's family about what is going on.

I do feel a measure of relief at this. They are really taking on a lot of the stuff that just takes up time and energy and space in my own head. I don't think it will be an overnight type of change, but I do hope that it is a shorter amount of time before I start to feel better and more rested, able to handle things. I'm doing my best to trust in others; I don't really have much choice at this point, but I'm doing my best to reassure myself that this is truly the best thing for us both. This helps us both, and with both of us having some bit of relief we really CAN start to work on our relationship and marriage.

I feel the need to also mentally remind myself that Wash is (seemingly) not going to die like now. He still has some time, and I am so hopeful that with some help, it will be good time that he has left. I've asked him to start thinking about what he wants to *do* while he still can go out and do things in the world. A place to visit, or sight see, or person he wants to meet? He said he will spend a few days thinking on it.

Most of the people we've now told have been supportive, some wondering why I chose now/why it took "so long". It was not entirely my decision, a big part of it was waiting for Wash to be ready for it, or at least open to what the benefits could be. That took some time, since he spent a fair portion of time denying his issues. It's not as easy for me to do that. His issues can acutely effect me.

I also have to call DES this week; there is an issue with our Food Stamp account. I've been paying out of pocket for two weeks for groceries. Not that fun. SNAP benefits make up pretty much my entire food budget, not a "supplement". My worry if they have cancelled our benefits for some reason. I really cannot afford food, rent, electric, medical costs (what Hospice doesn't cover and then my own medical co-pays), and entertainment for Wash.

BUT, I'm trying not to think about depressing things anymore tonight. That can wait a few hours.

We had some good news and good things today. My garden is coming along so well now; all the bulbs and seeds are coming up, I harvested strawberries this week and will get tomatoes next week. Wash gets massaged tomorrow. We heard about a charity Wash loves getting some donation help (kinda in his name/at his behest) which will in turn help a lot of families. I added my (almost/semi) retired mum onto Netflix today for her birthday present and she was nearly jumping with excitement. My family had a lovely dinner together and we agreed to try to see "The Muppets" as a group. We've gotten some nice distractions in the mail lately (wonderful books and movies!) Our friend has a new job after months of looking. Leto has been doing very well with his leash training and now spends time most afternoons outside with us.

Good things.

The pain exists. Keeping the happy and good things in the front of my mind helps to quell the pain. That's where my focus goes.

Thank you all deeply for your kind thoughts to us. We are both thankful for every single one.

Updates

I am beyond tired and not sure how to even really say this.

Wash is still stable and around. He does not have a new tumor. But, he is not where he was. He has a lot of memory problems now, and hiding them just does not work anymore. He is not happy and he is not living a good life right now.

I want that to change. I hope it still can.

I called Hospice. He's not going anywhere, they will be coming to us. But they have the help he needs right now that I just cannot give.

I miss being a wife. I miss thinking about myself as a person. I miss being happy, myself.

This is the best chance we have for that. Hospice allows us to be a married couple again. They take some of the pain and worry away. My hope is that I can spend 6 good months WITH my husband, instead of 6 months fighting Cancer and Government FOR my husband. I will have time to rest myself. He will have someone else to responsibly watch and care after him for a period. I can relax. He gets access to wheelchairs and other equipment so he can go outside and socialize again, not having to factor in his physical fatigue anymore. They also have counselors and massage therapy for him too.

I hope and I believe he is not in the last two weeks of his life. But, Hospice is there for those terminal and End of Life- and right now, his Quality of Life needs to improve. I hope this is the step that does that. I don't think I can do this on my own anymore. It's just too much. I don't want to be what brings him down, he just needs more help.

It's still a hard thing. I almost feel like I failed him. Like I let him down.

He fucking deserves some happiness.

I'd like to think we both do.

I don't like how much this decision hurts. I have to be hopeful for it. No one else is doing this, no one else is caring for him, it's me. I say it's time for help, and time for a better End for my love.

Out West

Developments.

I have to have a meeting Monday, and talk with Wash's family.

We had a nice period of about 3 hours Saturday, complete with Muppets. Then, the last straw broke.

I will write more after I talk to his family.

Your kind thoughts and prayers are always welcome and appreciated.

Farnsworth Formulae

Thank you; FSM, the Lords of Kobol, G-d Emperor of Dune, G-d of the Cylons.....

We got the best news we could get today, a nice clean stable MRI for Wash. His scarring has not grown, and no signs at all of new tumors.

We're going to take some time to just relax, breathe, and celebrate a little bit.

Also, Wash's Neuro-Oncologist LOVED the little Neuron Plushie we gave her. Geek jokes, love 'em.

Deny the Lie

This is a busy and stressful week for us.

Wash meets with his Oncologist, his Neurologist will check the MRI he's having tomorrow (again, barring any Insurance Fuckery) and at the end of the week he goes in for a follow up/diagnostic with his Radiologist- since not too many of GBM patients will make it two years out after 42 days of radiation to the brain, Wash needs to get checked. They will do some tests to make sure he is not showing signs of developing different cancers from the treatment (apparently Leukemia is common) and check his mental status.

Wash is pretty scared of this week. I don't blame him. I'm scared too. I want him to be "stable" still. I want another MRI where they tell us, "Nope, no new tumors!". Every time we go the odds grow more and more against us, but I still have to Hope.

I have seen what happens, what is to come for the End. I'm not ready to face that yet. Neither is he.

Sadly though, this testing week always sends him regressing. He is acting about 4-8 years old for the past few days. Very very distracted, just wants to play with toys or games, not interested in talking, reading, creating. He's Depressed and scared. I'm hoping if we have some good medical news this week it will help, I'm also going to talk to the Dr about adding on another Anti-Depressant for Wash. He does not have the high Quality of Life right now he deserves or can have. We're not rich at all, I barely can make ends meet each week let alone the month, but there are things we can both do for free to keep happy- he lately has just had no interest.

I feel like shit as I have not gotten around to writing all my Christmas thank-you notes yet. Dear Readers, they are coming. Wash takes my attention and priority first. I feel bad though still, I wish I had more time or more help.

We have had some good moments in the past few days, absolutely. But, when terminal cancer is literally your life, the day you find out just how sick or stable you are can be defining. And Wash has that day every 6-8 weeks. Mentally, that is a lot of stress.

As hard as it is, and some days I feel ready to give up myself, I want to keep writing. I want this record here after he is gone. I want to be able to really remember how the days were spent, how my emotions played, and I want to recall who my husband was. Not a perfect man, but entirely wonderfully, beautifully, human.

Sadly, even daily time in the garden in the back has not helped his mood.

I have to be the one to be Hopeful for the both of us.

Short Takes 8

Betty the Blazer is back home with us! Yay!

Wash is feeling real depressed today. He's kind of stuck in the mindset that he is "useless" and "non-productive" and therefore should just die/not exist. I've been trying to explain rationally how this is not really a correct or logical statement, but he's in such a funk he's not really listening to me.

I will try to write later, but I'm really trying to watch him today.

LAN Parties

The wireless broke on the computer over a year ago and this weekend was just the "too much" point for Wash's (old/spare) 10+ year old LAN cable which we had McGuyver'd into working.

Less internet for us for a little while - at least until I can get down to a store hopefully this week.

It's a nice thing.

I've been spending a lot more time reading and in my garden, both of which I do love, and Wash has been Netflix/Amazon watching his heart out (that wireless at least still works) and trying to make a "paper/pen RPG" which involves tossing loads of sharp little 2" minis from 40K onto the bed for a few hours a time.

We got in two walks yesterday. We went out again around midnight or so, well after the sun was down (it was in the 80s! (F)) when it was starting to get a bit chilly. We refilled our gallon jug with water and did a 'good deed' before we returned home. It's the type of thing that should be and needs to be done, but for some reason it is so odd, and perhaps embarrassing to talk about. I don't feel like a soapbox today though.

Today I have a routine Doctor visit for myself, and a few errands I hope to enlist a friend to help with. In theory, I get Betty the Blazer back to drive on Wed. Living in a "food island" is incredibly tough- We have no grocery stores within walking distance, and none even that would require only one bus- the minimum would be two transfers. We have a CVS with a small selection of canned goods and a Farmer's Market about a block away that does carry some more "grocery" like items and some fresh local produce, but the prices are all about $2-4 higher in cost for everything in there. I think Whole Foods would be cheaper!

My bro took us shopping briefly on Sat, but there are only so many canned foods Wash will eat.

Stop ranting. Be the Change, and do something.

Wash's next MRI is in a week. By Wash cycles, that means this is his "Pre-MRI-Symptoms" or, his "PMS". About a week before his check, he starts to get a lot more depressed, and morose. He's very negative, and sometimes petty and nasty. He's scared, but does not like to admit it, so he expresses as rage. Fun times, fun, times.

So, a mostly slow day here, but I'm trying to focus back to Wash's needs this week (Because I took 'time off' this weekend to enjoy life and time with my husband and brother, and concentrated on my own needs as well. I don't do that.) and trying to be extra loving and supportive of him, since he is facing some nasty tests next week- or at least there is always always always the possibility of bad news.

Ah, New Years! We did manage to get away, my lovely brother came and took us to his home for the weekend. We had loads of fun, talked, watched movies, played with his cat. Thankfully, I did not worry that much about our property as for the first time since I've lived here the city decided to do their Police Checkpoint/HQ across the street from us! So many officers and dogs patrolling we had no illegal parking, no trash left on our street, and as best we can tell, no traffic accidents around us! A safe start to the New Year is always welcome.

I'm slightly nervous about tomorrow, but I am just trying so hard to be hopeful. We could use some good luck or karma about now, and I just truly Hope it is time.