Catch-Up

I'm 'back'.
Though, I never really left. I've just not been sleeping much at all for the past almost week and I often cannot write after staying awake for four days.

I read a book series for myself. It was nice to have something I wanted to read, wanted to finish. I don't think I've had a "fun" read since Wash died. I have some books and novels to catch up on.

So, aside from the reading.

Things have been good and things have been tough.

The hard stuff first.

I have lost about a stone (14lbs) in the last two weeks. Not for really trying, or stress, but mostly due to lack of food. This is hard to be honest about, which is likely why I have not said anything, but I don't really have money to get food anymore. SNAP (either due to Arizona State frak-ups, or Federal [Congress] Frakery) has been reduced for me, and with no income, I'm trying to eat on about ~$20.00 for 7 days.
I have no grocery stores I can get to by myself or walking, and I have no funds for a bus pass, since they increased the rates back in March. I have the CVS and the Farmer's Market. Both have a small selection of foods, and both are pretty expensive compared to national brand grocery chains. I do have friends who take me to one of the stores a few miles South of where I live, maybe once or twice a month, but I'm still on a stretched budget. So, I've been averaging about one "meal" a day.
This I am sure is contributing to my tiredness.

I have a lovely friend who is also an animal lover who has been helping me to buy cat-food so the kitties are taken care of. I have a lovely reader here who sent litter as well, which we are all-ALL- very happy for. (Thank you, K.)

But, I have about $36 to my name, and $4 in SNAP food benefits to last me until well into next month. Which is hard. It is hard to be 26 years old and having to ask my mother for help to buy toilet paper, and peanut butter. I have not had much of any luck with finding a short term, or part-time job. Most business close or get smaller for the summer when all the students and SnowBirds leave, and the few who remain, or who move here in the summer before school starts have seemed to taken all the open jobs around here.
I am worried. I have no idea honestly how I am going to pay rent, electricity (it's in the 100sF now. Would you like to live in the sun with no A/C?) or my internet; which is mandatory for me now, as I'm doing some things to get ready for college this summer.

Wash had no life insurance. Neither of us had even health insurance when he was sick!
Side note: our appeal date for AHCCCS was originally on Oct 28th, 2009. I had applied in August when Wash was ill and I knew he needed a real doctor, not a undergrad student at the college health center, and we were denied. I often try not to think how many more weeks or months I might have had with him if the tumor was removed 3 months sooner than it was.
No funds, no insurance, no savings. The bit we had went to our wedding in March of that year; and the whole thing was done for under $1000. Once Wash was not working, not able to work, from the tumor none of us knew was there, my savings were gone to pay rent and food. His parents, before they blamed me for his illness -and death- did help us that summer. I remember Wash crying so much. I remember being told by his father that "this was the true Wash, you're seeing his real personality coming out. He is lazy and unmotivated." Which, really, was entirely untrue- however it was correct in that those were the symptoms of his tumor manifesting.
I try not to be angry about that summer. None of us knew what was really going on inside his brain. The tumor growing, killing healthy cells, pushing his brain- swelling inside his skull. He was not able to be honest with me, or his family, or his friends, or the few campus doctors he did see. None of us put it together until he was in the hospital on Oct 26th.
I try not to think about how it could have been different.
I often fail, but I try.

This May marks 3 years of me being "unemployed"- as my State and the Federal government do not recognize being a fulltime caregiver for your spouse as "employed". Though it should be. Caregivers at home help keep the patient's Quality of Life high, and help keep Medical care costs down by not needing a bed in a care-giving facility. Those of us doing it for the people we love though, we are not paid or compensated. Even though most often in a situation where one partner/spouse is needing the care and the other doing it; neither of them often has income, or enough, coming in. Try living as a terminally ill person with special dietary needs, medication costs, rent, and electricity on ~$800/month. Or less. Often less.
It's hard. It is hard to say to someone who is dying, "No you can't, we cannot afford it."

I've been doing a lot of processing of my feelings, obviously. Which lately has included a lot of tears. I'm not fighting it, and it hurts, but the pain seems to dull more quickly when I don't fight it.

Moving more to the good, now.

I got some sleep last night/this morning. [5am-2pm]
As I was lying down last night, I smelled him. On our-my- pillow, and his bear Hoban. That was a great comfort to me. Maybe that helped. Or, maybe I just hit my wall of not sleeping more than 3 hours since last Thursday.

He would have been so happy and excited for me.
I got in to my college programme. I'm doing fundraising to cover the costs; like the down-payment for classes, and uniforms, and airfare. I am also applying like mad to every scholarship that I can. I am working hard on this, because this is for me. I have not done anything for myself since Wash was ill, even before.
I took a holiday in late spring of 2008. I married Wash in early 2009. That is really the only things that come to mind over the last 5 years that were in any way "for myself".
I want this. I want to go back to school, at least, in this small way. It is a summer term, so just under 2 months long, and not as much pressure as re-enrolling for a whole school year, or even a normal term. That might still be too much for me right now.
But this? This is perfect.
It is an all women's college. Dorm life. A town about the size of where I live, in Tempe. Lots of gardens. Outside classes. Peaceful parks. More so, it is in Israel and is history I can study and touch. This is a chance for me. This is a chance for me to find something inside myself. Some passion.
When I was about 8 years old, I read a novel (the third in a long, and still continuing series) that moved me and impressed on me so much I still re-read it yearly. A strong young heroine, adventures, dangers, and in this book- a trip to Israel. Archaeological sites and digs, and reading in original Hebrew and Aramaic words written by human hand thousands of years ago.
To me, that was the epitome of excitement. A small fire inside me started when I read that book, and I knew in my lifetime I wanted to travel there. I wanted to have a chance to walk in the Old City. I wanted to read those words written so so so long ago. I wanted to smell the air; so different I imagine from anywhere else I've been.
I have that chance now. More. I have a chance to learn for myself. To seek out the direction to continue on.

There is no "moving forward" or "moving on" from my husband's death. It will always be with me, and a part of me. But, I have been able over the last few months to heal enough to begin to see the world with me in it instead of mourning the loss of the we. 
This is a large and important step, and I am recognizing that.
My therapy team is also quite encouraging in this, as are my family and all my friends.
I like to think they are happy to see my desire to do something-anything- again. In a way, I am too.
There is still a part of me that wants to just sit in my closet, hold his TARDIS urn, and cry. Forever.

I'm growing to see that not only is that closer to impossible, it gives me no quality of life. That, he would mind.
School, though? Things being different, him being alive, both of us working, he would take me out to celebrate and encourage me every step of the way on this. He is the cheerleader inside my head. Much cuter than Teri/Ferrell though.

Things going well and I can raise the funds, get scholarships, and take care of all the other details? I'll be in Safed by the end of June and back home sometime in August.

I am also working on a few projects to hopefully get some of the novellas/short stories Wash wrote and illustrated published. The cancer could not take his creative imagination from him, and perhaps knowing that his works, his passions, were "alive" in a way, being read, being appreciated, will help me. Knowing that he is not forgotten.

That is where I am at.

My belly might be hungry, but my self has Hope to feed on again.

May Day

May is National Brain Tumor Awareness Month.

Time again to post the first story of how we came to find Wash's brain cancer.
Please Read.

To learn more about Wash's brain cancer, GBM, visit SaveWash 


I'll have a proper update later on.



Share the warning signs. Be aware. Reach for help if you need it, or know someone who does.


I don't want anyone else to die because they were sick and could not afford a licensed Doctor.

For Wash

Today I Vote in my 3rd Presidential Election.

Today, I Vote to keep President Obama in office.



Today, I am Voting for my Rights as a woman to control my own body. Even as a Widow.

Today, I am Voting for my friends' and families' Right to marry who they love, serve in the Military, Adopt children they love.

Today, I am Voting to change the way we actually enforce laws in Arizona, and to change the Administration that lets over 400 women and children not have rape kits processed/not prosecute rapists.

Today, I am Voting to change the Representatives in Arizona away from the White, Rich, Males which have held seats for decades.
Today, I happily Vote for Sinema, because she was one of the FEW people back in 2010 who saw Wash as a person, who was sick and needed help, and not just a number or dollar sign with what he will cost the State.


Most importantly, I am Voting today because my husband cannot.
My husband died before the election.

Because of the Affordable Care Act ("ObamaCare") I can for the first time see a future in America where other people will NOT have to suffer through fighting for their life AND their health insurance.
I am voting because at 26 with pre-existing conditions, the ACA might save my life in the next few years.

If you personally disagree, that is fine, that is the joy of America; we are allowed to disagree! We can disagree on something, and even still be friends! Trust me.
But, I simply ask this; for those who are eligible to Vote, please do so.
You cannot complain if you do not take part in the process.

********************************************EDIT********************************

I Voted.
Number 209 at my precinct.
No disenfranchisement (per se) but several students had to accept Provisional Ballots.
Arizona has some frakked up Voter ID laws, which to me, make up a "literacy test" and put the 60,000+ students who live in the Tempe area for school in a rather odd place; they have to have "proof" of address, which for many new 18 year old students is mandated to live on campus. Most do not have the two or three forms of Government ID with current/correct address on them.

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.

Where's Mousey?

You don't scare me.

I woke up yesterday at 9am. I worked, really worked, the whole day.

I watched my husband forget when he was, where he was, and parts of who he was.

I regularly stay awake for 20 hour shifts out of a 24 hour day.

I am watching my 27 year old husband die, and die from a disease that takes away who he is, what he loves, and his memories before it begins to take away his physical being. Which it has started.

So, you, Mr Debt Collector?

When you call at 8:23am, after I've been asleep for perhaps 3 hours?

No, I'm not compassionate this morning. I'm not kind. Cancer is not kind.

I'm going to honestly tell you, you will get nothing.

We have no money. We have no income.

Wash will never ever be able to work again in his life to pay off his medical debt.

We owe the State, the Hospital, and the Federal Government well over $1,000,000.00 already for his care. Really, we hit $750,000.00 before he was even discharged from the hospital. It might be close to 2 million dollars now from his years of care and treatment.

I'm 25. My credit is already trashed. I did not graduate before my husband became terminally ill.

I got to see that $1 million dollars of care cannot put a broken person back to "whole".

I saw a 8cm tumor take over my husband.

Mr Debt Collector? You don't scare me one little bit.

I can pay you in tears or perhaps blood.

But money? What's money to Cancer?

You are far, far, far less scary to look in the face than a diagnosis of Glioblastoma Multiforme.

When there's someone by your side to sing along

I have not been feeling my best lately and putting off taking care of myself. People I value have pointed out just how stupid that is, as well as avoiding the doctor, so I sucked up my issues and called.

I'm hoping to get some answers and some help.

Some short, but good bits today.

Tuesday sadly Shepherd's pie was cancelled as there was a bug going around my stepdad was not feeling great. So, my mum came over to our place instead, we grabbed Tacos for Tuesday dinner and the three of us enjoyed watching "The Muppets". My mum started out hushing at me but by the end was singing all the songs out loud with Wash and me. It was a really sweet and happy night and memories for all of us, I feel.

A little later on just after we had finished the second episode of "Texas Ranch House" the power for our entire block went out. I'm still trying to figure out if that is ironic. I just grabbed some candles, Wash went to sleep with a few extra blankets, and I stayed up and read for a couple hours until the power reset. Then I turned in.

Wednesday I really was not feeling that great myself, and Wash really just needed to *write*, so he just took the computer over for the day. He finished his short story a while ago and has been doing his best to get some help to really edit it and make it into a nice product. I'm proud of his hard work and how he has been able to re-focus his grief of losing his ability to be an architect, into something else; writing fantasy/fiction and illustrating. Some days he can work for a few hours with great focus, but most of the time his projects lay undisturbed until I remind him or something happens to inspire his creativity. Brain cancer and injuries are so odd; certain predictabilities, and other flat out deficiencies. He cannot remember to brush his teeth, or even eat on a daily basis, but he can still write a 20 page short story. I am constantly amazed by how much of "him" remains, and how much of his personality and even skills have just gone away.

We also had some good insurance news this week; our old horrible case-manager for Wash is off, and our new one is a very respectable woman. Wash had a 2 hour assessment that left him very drained, but we have a few new things to help him now; a new cane he got today and he will have an appointment soon to check his eyes and see if glasses can help him. We're not sure how bad is sight is due to the tumor pressing his optic nerve and/or the brain surgeries, and how much glasses can really help; but I think that if his sight is improved, even if for seeing or just reading it will help. Everything right now I can do to help him still *feel* independent, even if he is not, it helps his Quality of Life. I don't like thinking we are at the point of just audio-books for him, so I hope maybe, just maybe, reading glasses might help him do it himself.

So, my paperwork says that as of April 2012 Wash will be on ALTCS totally and in full effect, and at that point (the social worker explained this from my paperwork) we will STOP having to pay the additional $125.15 and $98.00 Medicare/Medicaid premiums a month. Which I've been having to do out of pocket for about a year or so now. It will be really nice when I can stop being "past due" on all my bills.

Today I am trying to play catch up as best I can, while keeping my eye on him, and feeling gorram awful. I see my doctor this afternoon, and I'm hoping even if there is no pill for my stress levels, she can help with some ideas/referrals, or diet.

In the evening we went over to my mum's house and spent the evening with my older brothers; one who lives around here showed up even though he WAS sick with a cold (he wore a mask the whole night) and my older brother Yoshi had flown in for a night to fly a charter Cactus League team to Japan the next day. We got to share photos, stories, and some laughs. I heard all about my lovely nephew and his adventures (he went "skiing"/sledding for the first time in Feb! He made a life sized 3 foot tall snowman too.) shared some of what was going on with us, and just had a nice night with *my* family around the table. It was wonderful on so many many levels.

Having him live so far away makes things hard, but I'm glad for the technology that allows my mother to speak and teach English to her grandson in Japan, and allows us to share so much so fast. Wash even remembered the last time he had been in town, which was back when he was still getting chemo I think!

I can't think of what else has really been going on, but I've been forgetting things all week.

The Fiddler

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

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

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

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

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

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

We got a few nice things in the mail.

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

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

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

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.

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

Breathe Easy

Part two of maintaining insurance / MediCare and food stamps (SNAP) complete!

My asthma has been bothering me a lot this week, not sure if it is the wetness- a trigger- or stress- also a trigger. I'm hoping and trying to avoid having to see my doctor or worse, the hospital. Thankfully the nurse on call knows me personally and gave me some things to try with my home nebulizer first. I'll just have to try and not stress today and breathe easy.

Back to insurance. So my first interview/panel review was today. We have one every 6 months and they get to look through just about everything. Medical records, yup. Bank statements, yup. Copies of food reciepts, yup. Copies of co-pays, copies of every prescription filled for the last 6 months, yup....

It's about 50-70 pages of paperwork for me to gather and file. Roughly 20-40 hours of work. Hours away from Wash. I hate that part. I've hated it the last 4 times I've had to do it. Not to mention the pain of having to fax all this in and get confirmation. It is one of my biggest stressors outside of money and brain tumors.

This time, was a bit different.

For starters my wait time was only an hour to begin with, which is not bad- I'm used to 2-3.

The main interviewer also never doubted me this time when I confirmed Wash did indeed have terminal brain cancer. She was patient and kind. More so, she was able to (unlike any others prior) understand that me taking care of my husband was full time and unpaid. We had our interview for about an hour and then the best news came; I only have two documents to submit to the board this time around. They have my file already, so they are not making me repeat every piece of paper like they had. Huzzah!

I have about 2 more steps to complete before we are both "set" for the next 6 months with insurance and SNAP, but it is amazing what humanity can do. The simple act of understanding that you are dealing with people; sick people who need help, rather than just numbers or expenses can be... so amazing. I'm amazed at how nice I feel after being treated like a human.

Why is being treated like a human such an aberrant experience?

Aside from that, we had some good quality time this week, and some really nice surprises in the mail. Wash was not up to his physical best yesterday but we are both hoping he feels better tomorrow, I want to take him down to the aquarium on Friday.

I have more to say, but I just told myself not to stress out, since I'm trying not to fuck my asthma up any more.

Keeping secrets

I came to a realization this weekend; one that is simplistic and complicated at the same time.

Life must be unfair. There is no way- believing in a deity or no-for life to BE fair. Fairness implies some level of choice; either on the giver or receiver's end. Some things, some of the most basic things, there just is not that "choice" that is held in an illusion.

Wash did not choose his cancer.

He did not choose what type.

He did not ever choose when it came.

He did not choose the size of his tumor.

He did not choose the location.

He was "given" the choice to live or die. Duress takes on a much more living definition than flat words in a dictionary.

Wash spent a lot of time after his EEG recovering. The neurologist says it did not show evidence of epilepsy, but he did have physical sensations and issues on his right side after a light test; so there is something going on. He has some specialist conferencing about what new anti-seizure medication to switch him to. I know a clinical trial was mentioned, but I'm not sure if he qualifies due to his cancer status.

We have had some good moments lately. I hold onto those. I need to write about them more, find a way to hold on- there will never be enough for the short time I have my husband.

We spent most of a day watching "Fringe" in bed. He was still very tired and in a lot of pain on his right side. We watched, looked for the hidden Watchers or Auggie (August) and cuddled. We spent a lot of time in the moment. For us right now the future is so uncertain and painful to imagine; it still physically hurts to think, to mostly know, I will be a widow in my 20s. Thoughts hurt. The future will hurt. So, we spend time in the now.

We spent some nice time as a couple. Just a few walks, I cooked a little more than normal, and some extra "adult" time; time we both enjoyed getting to spend. It did not feel rushed or pressured, like we 'had' to. I simply tried to be in the moment and to enjoy sharing that moment with my best friend, who is also my husband.

Sunday was nice; Wash had not felt as good as that the whole week; his physical strong point. Mentally he was a bit slow, but I have helped him on those days before. The morning I spent in the kitchen making some vegetarian Crock-Pot chili / bean stew. We left that to cook and make our house smell awesome, and get me away from the Fair down the street with thousands of people. (I'll have to deal with that shit again come the New Year's Eve block party/Fiesta Bowl)

We headed across town to my brother's house and got to play with his new home theatre system; Wash had never seen "A Clockwork Orange" before, so we figured as good a time as any to see it! He seemed to enjoy the film, at least from a directorial standpoint. We came home, drove without any real trouble thankfully and noticed my odometer was close to a really cool number; though we did not hit it that night.

We came home for dinner and had a friend come over with his version of meaty chili- I had also made a cornbread with honey-glaze. To say it was a hit would be ... underwhelming the passion with which it was consumed. It was cold and rainy outside and the chili was warm and so delicious. It was a really fantastic evening, and in a week we should hopefully have one more for dinner- our friend comes back from Argentina at the end of this week. I cannot wait to hear all her grand adventures and see the photos.

We ended the evening with cookies I made and some lively BINGO games.

Today dealt with the neurologist again, and another rainy day. Though, we did get to drive the extra mileage needed to make my little Aspie brain so so so happy. 16 years old and my car hits this;

There's always more, but for today, I'm trying to just hold onto the good and happy and lucky.

Stress

Wash has his EEG tests and his Epilepsy meeting today. I'm beyond worried- mostly that they might not find what is causing Wash to have these episodes. He is not happy right now, and his quality of life is not where it needs to be for him.

I'm consumed by worries.

I dug out $4.25 in change, and I have to hope that that is enough to get us to the hospital and back home.

I have to pray the co-pay is low enough my bank balance still can pay it, or that it's big enough they will work with me and not expect instant payment (like the specialist who charges $150-760 per visit and who I am still trying to pay back from August appointments on) which we can't come up with.

I'm hoping that my cell phone service is not turned off yet- I'm waiting on more of my own doctor appointments to be scheduled.

I'm hoping I'll be able to find money or some way to keep our electricity on after Wed.

I'm hoping I'll have money to pay for Wash's medications this week.

I'm hoping that the $51.66 I have left on our SNAP (food stamps) will in fact be able to last another 9 days. No, sorry, 10 days.

Outside of that all consuming worry that the world I've tried so hard to keep going for Wash (at least until he dies) might come crashing down, we had a few good moments this weekend.

I trimmed the tree on Sat and hung lights and other decorations. Wash had a few episodes on Sat and was not really co-operative with anything I suggested, so Sunday I tried very very very hard to be super patient and just get him engaged with the world instead of sad in bed. We had a good day, I hope to write about it later.

God-damn.

I wish I could fucking just think about how to best care for my husband and give him the happiest days he has left, instead of just being worried worried worried about how I'm going to pay for him to live here, eat, have medication, have power....

Fighting cancer is so much harder when you have to fight poverty first.

Poverty is fought before his cancer.

How fucked up is that?

I just can't do it all.