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.

The largest appreciation

Last day the fundly donation site is open. 
I still have so many medical bills from Kevin, and so many more of my own from my broken bones last year and my own health issues. 
If you can donate anything, it helps. 
If you can share the link and our story, it helps. 
If you can give prayers or good thoughts, it helps.

I'll be filing for bankruptcy due to medical bills this year. Again, anything my caring friends, family, or those touched by the story of AZ driving a young widow into utter poverty can do; it all helps. 

Thank you all so much. 
I was Wash's (Kevin's) caregiver for more than 3 years.
Now the people who care and love me are helping to give care to me, so I can continue on with my life. 

My husband did not survive against brain cancer; but with the love, help, social, emotional, religious, and other support from my circle I can survive this next part of my life as a Widow.

Veni domum

I was gone this weekend out to Gold Canyon for the wedding of two of Wash's fraternity brothers.

It was beautiful and moving beyond words I have right now. I'll process some and write more.




It was also my first wedding I've been to alone/without a partner/ since Wash passed.
So, a lot of emotions.


I had a really good session for about 3 hours on Fri morning with Hospice grief services. It was helpful in many ways, and I have some reading resources to explore, and I'll have a standing appointment either weekly or bi-weekly. Which, again, is better than anything AHCCCS provides.

So, I thankfully have a few new tools to help me process some of my emotions from this weekend.

Thank you all. I'll catch you up in a bit.

Struggles

Redbox is giving me a free rental tomorrow.
Going to see Cloud/Atlas with my mum.
Eating dinner with my family at my favourite Mexican food restaurant.
Going bowling after.
Birthday pie.

I am going to try to enjoy it.

In truth, I am struggling a lot with stopping my brain from just constantly re-living the 25th, 26th, 27th of October 2009. When we found the tumor. When my life changed completely, and my world stopped on its axis.
When my future and dreams were stripped away by a connected group of rogue cells 9cmx5cmx3cm.

Tomorrow will be my first birthday as a Widow. My first birthday without my husband.

Today is even one minute at a time.

I have some great friends who sent me a LEGO set and Fringe. 

If anyone is wanting to send me a little "birthday" something, I do have a amazon wishlist, or the Fundly Site is still running for another two weeks. I do still need to figure out some monetary needs for his memorial service, and to cover back the cost of his body removal/cremation. Not surprisingly, his family did not help with that. Thankfully, we found a place to take care of it as "cost" so it was only a bit over $600... but as I still have not even received my $225.00 "funeral" settlement from Social Security...  there are stresses. 

Now is not the time to talk about those issues though. That just leads me to a place of hurt, anger, and betrayal. 

I've been painting a bit more, trying to take a walk each day, get myself out of the house and bed.

I'm starting to forget what he smelled like. 

Leto, being adorable

Had some nightmares again last night, but I was able to control them more.
I woke up feeling better than I have in a while.

Still broke down and sobbed for a bit in the shower this morning.

The cats have been cuddly lately. Super cute. Needy. I'm ok with this, and spoiling them right now. Maybe we all need it.

My friend R* is here from the Pacific North West on work, and then she's spending the weekend with me before she leaves.
We've known each other for years.
She knew Wash.
She's also lost someone close to her to (a different kind) brain cancer.
So, she knows.

Hour by hour, some worse than others, but I just hold on to Hope that somehow it will start to get better, at some point.
I still Hope it will.

Visitors

Our friend Salvatore* arrived yesterday/this am with his mum to help out for a few days.

The boys are bonding well and I managed to get two great, solid naps today.

I think this is the start of a good thing.

Freckles

Wash is tucked away, with his blankets and little stuffed dog and Hoban the Bear. His pain spiked up very suddenly this evening but we managed to get it back under control and down to where he can relax, not spasm and sleep.

Lately he's been sleeping nights anywhere from 13-16 hours. The good news is the pain medications seem to be working, as for the first time in three years, he says his active neuropathy pain is going down. He's overall happier when he is in less pain. Though at this point, that is mostly the physical pain that is being addressed. The emotional pain from facing mortality at his young age with his already traumatized brain ... it can certainly make things harder some days.

I have been trying very hard in the last few days to really be calmer around him and just agree, even if he is making no real sense. My Wash would have wanted me to have passion still, to disagree and debate. But, right now, living it, I'm told left and right "Don't argue. Don't fight him anymore." Wash would not have wanted that. I'm not really certain what I want, and what is easier; or if they are now the same thing.

We have a good friend and his mum coming in this week from SoCal to help take care of things around here for a few days; to help watch Wash, give me some rest. To help me clean the house, take care of things I cannot with a broken foot. To let me get off my foot. To give us support; since Wash knows and really likes this friend too.

I want to be clear that it is not a case of our local support system being a "total failure". That is not true at all.

The issues are that our local support is 99% people in their 20s. Who are all just starting their own careers. We had 4/5 of our local support who lives in the same city as us move in a 5 week period. This also happened to be around the start of my foot issues. A correlation of unfortunate timing.

Our local support works, they have to, and are lucky enough to have jobs. I also really want to emphasize that they are our age; dealing with serious issues this young is a challenge in general, to have handled everything that has happened to their friends (us) over the last few years must be terribly trying for them as well; I'm honestly surprised we have not lost even more friends; like the couple I knew for more than a decade, helped keep together during times of relationship crisis, and then when Wash was ill and they were getting married... both of us fell off the map. It ended so badly. I'm still hurt two years on.

So, I am thankful for those who have stuck around and been there, steadfast. I'm thankful for our friends who show up weekly and give Wash a sense of stability and love. I am.

At the same time I recognize that our local group is quite small, and quite limited by age and work. This has caused issues. The conflagration continued with the saga of the Awful Social Worker (ASW) who we have not spoken to or heard from in two weeks, since he stopped by and Wash had to give him the "It's not you, it's me" speech to get him to leave. This has effectively left us without a Social Worker.

Wash's insurance covers 22 hours per week of caregiving (that is not me). That works out to 3 hours 6 days, 4 hours 1 day of the 7 day week. That also leaves 20-21 hours out of every day I am alone here as the sole caregiver for Wash, who needs EVER so much more help these days with everything. This means that for the last three weeks, though I have been wearing Das Boot I have not been able to keep off my feet as completely as my doctor requested of me when the break first happened.

Which leads up to this week, when help arrives, and today, when I had my first set of follow up X-Rays.

There was some expected news and some good news, tempered with some mild hope.

My foot has not healed. In fact, it is still quite weak and broken.

However, my doctor also knows me, and he knows Wash (the office took care of Wash as his Internal Primary Physician) and he knows our situation. After I explained that I was being as medically compliant as I could, without putting my husband in danger, he decided that giving me 3 more weeks in the Boot to try to heal more would be ok. He also gave me a note to pass along to Wash's insurance in the hopes that with some medical backing and paperwork the insurance company will allow for more Aide hours to caregive for Wash while I stay off my foot and let it heal naturally. Or else my insurance (which is the same as Wash's; AHCCCS, the State Run Group) will eventually pay thousands for my orthopaedic consult, hospital stay, surgery, casts, and physical re-hab. Giving me a full day caregiver for 3-4 weeks seems ever so much more fiscally practical, let alone humane.

I don't trust at all my Insurance to make a humane decision though.

Ah, I'm tired.

So many of my close friends are going through some losses of their own right now. I ache that I cannot be there more for them.

I'm also so thankful for my extended friend family, and the Geek/Browncoat Army which has rallied to help raise funds for my friend to come help us and take care of me and Wash, and help me take care of Wash as we move towards what I think is the end.

He is in more pain each day, but so far thankfully each day we have been able to keep it under control and not to an unbearable point. He also has some new worrying swelling in his face/head and some specific pains that make me wonder if he has another brain tumor and perhaps where it is working it's way around in his brain.

He's not playing with LEGO sets too much right now. He got a couple LEGO books and I think is reading them and trying to get an idea to do a project with a mix from his sets. I hope. I hope he is still enjoying them, even on some level. He enjoys less things over time too.

Burgers he still loves, though, and watching Dr Who with our friends. Warehouse 13 on Monday nights, where he still claps at Jane Espenson's name on the credits. Every.Time. Every. Week.

He plays games, like "walk the plank" and some other Pirate themed stuff. His Aides are wonderful and take care of him, clean after him, and play with him when he is awake and has energy for it.

There's a few other things, but I'm quite tired and past the point I might have been trying to make with this post.

Cheers for people who love and support others, be it by phone call from across the country, or bringing over a set of burritos for a terminal guy to eat, or friends buying groceries to be delivered since my broken foot in Boot makes driving impossible. Postcards. Texts saying "I'm thinking of you." So many ways to show how much care, compassion, and friendship exists.

We are rich in friends all over the world, even if our local group is numerically small.