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.

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

Looking for Bat Country

It's been a hard week of truths for me.

I've had some good long talks with Hospice, and some friends who have literally been in a similar situation with brain cancer.

I've been holding myself trying not to fall into a depression. Trying not to lose the functionality I still currently have. I feel so tired, so much of the time. A deep exhaustion.

2009 was the scared shit year.

2010 was the year of fighting, chemo, and insurance pains.

2011 was the plateau. Was the "holding pattern".

2012 has changed. The way things work, the way he thinks, changed.

He's not going for more chemo. He made it very clear a long time ago, he could not face that fight again. Losing so many days to chemo, sickness, fatigue; for something that wouldn't raise his Quality of Life.

But, that part is hard to focus on, even though I remember when it's now in my face. When the inevitable has started to really happen. As much as I appreciate you, Dear Readers, this is still a way for me to talk to myself, to preserve these thoughts. A record of Death.

I don't know how to tell the people who are not around him so often how he is. I don't have the words that dull the sting. I live it, every moment of the day; but telling the other people who love him and care; so much so it hurts them more to see him like he is than stay close.

I just don't know anymore; I don't know what he wants. It's so hard for him to really grasp a concept to be able to articulate his desires and needs now. My biggest worry and fear is he is no longer getting the comfort he wanted from living with me.

I am so tired, but so guilty that I'm not doing "more". I can't even begin to know what "more" even is, but I still feel like it's not enough for him. I'm not doing EVERYTHING I can to make it more "fair" for him.

I've cried a lot this week, perhaps more than in the past month combined. It's terrifying to feel like I'm really losing him again. I have flashbacks so often to 2009 and the summer and the tumor, and how scared, how perpetually frightened I was then. He wasn't working and my hours were part-time. Money was always a worry. We were fighting over stupid things and I just did not know why. He was withdrawn, angry. He was no longer laughing. It was dark. I remember our huge 4th of July fight. I remember wondering if, on the Thursday before we found the tumor, I would end up divorced before a year of marriage that know one even knew about?

All of that keeps coming back.

Some days he feels/remembers/thinks he is in a time around 2005-2009. He's vaguely aware time has passed, but it's such a hard concept for him; time.

It's so weird, and so painful to see his brilliant brain doing this to himself. He knows me, but not always who he is anymore.

He has not been my "husband" in a long time. He cannot even remember to say "I love you" to me daily. It hurts, but I try to keep the pain down, like a bruise. The scary part this time is not that we don't know what's going on. His medical team and I are fairly sure there's something going on again; most likely another tumor(s). Since he doesn't want "treatment" there's no point even checking right now though. Schrodinger's Tumor. Better to just not be imagining what is there; to be unawares, and he is.

There's the smallest kindness in that; I don't think he is very aware at all just how much has slipped away or that there might be a tumor. Well, I guess today he was talking to the SW and thought he was back in 2009 and knew he had a tumor, but didn't know it was removed.

He gets a lot of details confused.

I knew this time would be coming. I knew from the time he went into the ER and I saw his CT scan. I knew from the Oncologist, the Radiologist, the Neurologist, and the Hospice team.

I knew it when we would have talks about his wishes, and I knew it when I had to ask for the urn to be made.

But, facing the end, it's hard.

I know statistically if there's another tumor and he doesn't treat it will be a couple weeks to maybe 3-4 months.

It's hard to think past tomorrow, maybe a few days from now.

I keep feeling these conflicting portions of myself scream out that I'm both way too young to deal with this pain, this heartbreak, this loss, this responsibility, I also feel so so so old, so aged, so seasoned to certain ways of life and Death.

The Social Worker said it was nothing he felt I had to address today/tomorrow, but he'd read next week or help me write.

It's terrifying having to be so strong.

I'm thankful for the bit of local, physical support I do have, but I'm trying to be open and vocal about needing more.

Things and times I truly believe will only get harder from this point on.

I keep wishing I had my best friend, my husband with me to give me strength.

Terminal brain cancer in a 25, now 27 year old; it's unfathomable cruelty to watch.

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.

Wash's parents were supposed to come in and spend this week visiting him /spending time with Wash / helping give me some Respite time.

They cannot come.

Kind of waited very last minute to tell us.

Rationally I can completely understand it.

Emotionally? Like my husband I am beyond crushed. "Disappointed" is a light term. He wanted and needed this time with them.

We don't know how healthy or mentally aware he will be the next time they decide they can come.

I had to clear my entire schedule this week, now I am scrambling to fill it in.

Yes, I was looking forward to a little Respite too while they had a chance to bond.

Wash is just sitting on the bed hunched over and cuddling his teddy-bear, Hoban.

Fuck bad news days like today.

Life has been SO GORRAM unfair to him, I hate days like this.

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.