Pi Time

My fundraising for school is going well. I'm at the halfway point and hope to leave in about 3 weeks.
I'll have more to say on that later.

Tomorrow morning I again do my best to contact DES and have a long appointment with my Hospice counselor to talk about some of my issues leaving for Israel, leaving Wash/TARDIS "home", leaving my sweet kitties...
It's a lot.
Aelphie has been my animal companion since I lived alone as an adult. I know she is getting older, she has some grey now on her, but I still see her as my little girl. It's hard for me to think of being away from her comfort for the summer. It's hard for me to think of what she might be feeling while I am gone. To them, Wash was here and then he was gone. I don't know how to explain to them I'm coming back.
Leto, well, he's my baby boy. He is the last living connection to my husband I have. I'll never have his children, but we had Leto. He had Leto. And Leto lost his dad. The human he loved most. Now I'll be leaving him too. I'm coming back, but how will they know?

It's hard to think about. I can't help but cry. When I was so alone, the house empty but me, my family all busy with their own lives, my friends not close enough to comfort, or not able to be there... my cats were there for me. They let me hold them for hours while I just sobbed. They purred in my lap. They slept in the bed, making it feel less empty- less alone.

I'll be without them.

And I want this. I want this chance. I need to do this. I need to go.

But it hurts.
It hurts to not know. It hurts to know I will be so far away, without my support, without the few living things that love me around. I know Wash would want me to go. I know.

I'm afraid of something happening and I cannot be there.

I've been trying to work on a "normal" or regular sleep schedule, but the stress is making it hard. So much to do, but no real routine to help me function to do it.
I've been able to catch 03:14 on the clock every 12 hours for the last full week or two.
I see it and I say "Happy 3:14" or "Happy Pi minute my Love". Wash made a point for as long as he could remember to, to tell me that everyday- at 3:14(am/pm).
"This way, every single day can be our anniversary."

I miss him. I miss his voice. I miss his hugs. I miss his love. I miss his jokes- all of them, I miss him telling the stories he told over and over.
I'm not good at saying "Good-bye". I'm not. I don't think I ever will be.
So leaving is hard. Knowing it will be months before I see my friends again. My family. Being around people who love me, or my pets who do.


I apologize if this is incoherent. I am mostly just sobbing and crying tonight.

It has been a while since I have had the flashbacks, since they were uncontrolled. They are coming again. That night, over and over. The day he went into the hospital, over and over. The months of warning signs all flashing before me. The questions, always plaguing, 'Could I have done more?' 'What if?' 'Did I do everything I could have?'

The biggest one. The most evil. The one that never really fades, or really goes quiet.
"Was there a chance I could have saved him? Was there a way to avoid his cancer? Why did I not see it so much sooner? How much of this pain is mine to bear?"

The question that I will never really be able to answer; "What happens now?"

I never thought I would be a Widow this young. I'm angry, because when we got engaged, he promised- swore he would let me die first. I know it's not exactly something he could really promise, but I hate it all the same. I hate the loss. I hate the Silence now. I hate how empty my bed feels. I hate having to cook for one, not two. I hate that I am entombed with his things, his life, but not him. 
I miss being held by my husband. I miss my best friend. I miss him so much. It is more than a void, it is my own self, my own soul, broken in half and gone. Not missing, gone. Not lost, gone.
He made me better, and left.
He left me.

That hurts. "Pain" is not a comprehensive enough word for this. English has no real word for the feeling of desertion by way of grief.
I miss having a reason to smile. Something to be happy about. Someone.



There is no potion. No drug. Nothing instantaneous. No wave of a wand, or hat-trick.
Time does not ease the pain, the hurt. My wound may not bleed as much now, but time makes it grow deeper, makes it into a keloid scar- ever growing, not healing.


I was stronger with him. Better.
I just feel so small and helpless right now.
I am so very tired. I feel I should be nearing the end of my life, not the start of my adulthood.
I've lived so much already.


I miss my Love. I miss our Love. I miss being loved.

I miss being loved.

Growing up

I have a few moments between emails today while Wash is getting his massage/pain therapy downstairs.

He's doing better. Mentally at least. I managed to get him outside of the house yesterday for dinner at my mums and a walk. Small steps, but it is something. He's coming away from his scary weekend, and is acting more like the "Wash" I recall, his personality is coming in a bit more. His meds were adjusted, so I am hoping that was the right change he needed.

Thank you to all the friends and Dear Readers who have left nice comments for Wash (us). I do read them to him and he soaks up every single kind word right now.

I've been working a lot more in the garden. More solar lights, more plants, more herbs, and my folks even gave me an old trellis they had but were not going to us! The garden is a way for me to be around living things and keep sane, and it's a nice space for Wash that reminds him of happier times and our potential as a couple and family.

The kitties have been more social, even though it is getting warmer. I am shocked. Aelphie comes downstairs some days when Hospice folks are over, and Leto of course greets everyone and even now has a few people he knows will let him climb in their laps.

We had a small sad moment yesterday though, Leto has officially outgrown his (Adult Cat sized) harness! I was watching him the other night and he was walking around like a kid on all fours wearing a sweater WAYYYYYY too small. Kind of cute, but that must have been tiring for him! It's not the girth, that was fine, but the length- he's getting even longer and lankier. So, I guess I need to take a trip to the petstore to get him a dog sized harness. Leto has been CRAZY this morning, running back and forth to all the doors, sitting in front, waiting and willing us to take him out, but he knows he doesn't go out without a harness and leash (his collar is always on) so he just cries. Poor guy. I guess he really enjoys going out with us. He truly is a sympathy and therapy cat.

After his nap I'm going to have Wash take a look at some Urn-makers and try to catch up on the wonderful offers that have come in from the CF4L crowd. I wish I had more energy to answer everything in the proper timely fashion. I do what I can, and Wash gets first.

My own heath problems are not really resolving yet. My meds will take about 2 weeks to really start to work and maybe repair some damage. I'm not certain if I'd be better off now if I still had my gallbladder, or if it just would have melted in me regardless. I'm in a lot of pain daily, but I'm trying to listen to my doctor about foods /diet and give the meds the time to work.

Laundry today. At some point. I've also averaged less than 4 hours of sleep for the last three nights and no nap longer than 20 mins uninterrupted. I'd like a nap, but I can't sleep unless Wash is, or someone else is around to watch him. I will be happy come April when he can be approved for some home aides to help give me some respite.

Cat cuddles, a good movie or two, and some chocolate with mint tea made from my garden are on my list today.

Only

"You might be onto something there." "It's a possibility"

Wash has begun to speak almost entirely in riddles now. Everything comes with a modifier, there's a possibility or probability to everything. Instead of someone else just "being right".

Le sigh.

He's going to get checked out by the doc today; he's not been right the last few days.

Friday was a pretty good day, he woke up well enough, and even ate a little bit. Lately he's been forgetting to eat even at my prompting. We spent the afternoon over at the Salvation Army doing some volunteer work. It was a really rewarding way to spend a few hours, and Wash really did do his personal best to chip in and help as well. For me, the best way I can think of to describe it is as a big emotional orgasm. The feelings of self disrespect are taken away for a little while and you feel a greater sense of community and positive outreach.

We lit our Friday night Shabbos lights but did not get out that day- going out and talking to others like Wash did just drained him of energy. He seems to be faster to that emotional irrational edge.

Saturday he was boffed. We tried to go out to the Slutwalk, but his walk ended up going way short. First he wanted to go walk almost 4 miles! Then he was ok with trying for 2. Then by the time we had gone 1/2 of the first mile he could only go on 2 more blocks before we had to turn around back home. This did not bode well for his personal attitude.

We did spend a large amount of time Saturday together, though Wash was working on the literal very end of his short story- he has about 20 single spaced pages of his original short story (though, the idea may not be so much. He keeps forgetting about all his influences so it sounds like something I have read before, but not where I can place it). So far he has only read little bits to me. I prefer really to wait until something is completed before I try to enjoy it- as far as books and new materials go. But, this is his first story he has completed since he got his brain cancer, and it's one of the few things altogether he has completed, since his base personality likes to procrastinate as well.

We had to go out Sunday for a few errands. At the end of that trip I mention that this week, one week only it would be awesome for him to not go about talking about his cancer, the hospital, or begging for attention by playing his cancer card. Just this week. And only to me, when he is not sick.

Wash has grown a habit as his emotional response to make everything into a joke. Which, as a coping skill is not bad, but when it is the only one Wash has- it traumatizes me. Not everything relating to himself or his cancer is fucking funny. And some things really really fucking hurt. But it's funny and either Wash feels his own pain and processes it, or he jokes it off and it comes back to me. He so far the last two years has picked laughter and my own pain over his. Last night, especially after speaking to him, it was too much.

I really wonder, maybe start to believe now, I might have PTSD from this. From seeing the love of my life almost die in my arms coming home from my birthday. From discovering he had a brain tumor crushing his brain on my birthday, from what should be a celebratory day for me, into the worst memory of my life.

I want to learn to dissociate those events. I want us to celebrate Wash living, after this week. I want to claim back a happy day for myself, even if it is just one gorram day a year. Then we will go back to completely focusing on him, celebrating his every move and event.

So, back to last night.

Basically he was trying to recall a film name last night. He takes a while and doesn't speak out loud for me to help. He gets the name and I make a comment, not being funny or making a joke at his expense. He can't hear me though over the shower and proceeds to make an "Arnie" joke. I tell him "No, I am not joking, that is not funny, don't say it again."

So, he makes the same fucking reference.

And I flip.

For two years he has been making his tumor into "Arnie". Someone else. Someone not Wash. Not his responsibility, and a way to distance himself from the guilt of what he did - what Wash, my husband did while there was an undiagnosed tumor in his frontal brain. See, when the tumor got big enough it started fucking with his personality, his emotions, his motivation. And for a long period in that summer he was set to "Abuse". He physically abused me, and more than once. And emotionally abused me constantly. That is where a lot of the first stress of our extended family began to come in. I stayed, because I was truly convinced it was not Wash himself doing what he was. My family wanted me to leave. His family wanted him back home in Cali. I stuck it out with him, taking him to doctors and psychologists for months (Depression, what else could a 25 year old healthy male have?) before he had his grand mal in front of me and all my own denial of the seriousness of it went away.

So for two years Wash has been escaping his own mind by saying that the actions were not "him" but "Arnie" his tumor personality. I for a while, thought that was fine, if he could personify the cancer he could move on and process his feeling and emotions. NOPE!

So last night he makes not one, but two "Arnie" jokes. After I ask him specifically not to.

And then he got very very very mad at ? (me? himself?) and argued with me for a few hours. He would apologize and then take it back.

I asked for some time alone. I calmed down. We tried to talk and he just kept shitting on my words, seeming to me almost of pure spite. Not my Wash, not my love. I had asked him not to mention his cancer this week, and to drop the 'Arnie' bit. He didn't. He kept saying it was my issue to deal with, this is the "real world"

"No, Wash, this is our home. I don't expect that from others, but after 2 years of responding negatively to that every time, and after explicitly saying don't do it 5 hours ago, and then telling you to stop after you say it, and you did it AGAIN."

"But that's your problem to deal with."

"I am dealing and I do every time I go outside. But this is my home, and you are my husband. You should know because I tell you."

But he HAD to be 'right'.

So, for the first time in as long as I can remember we went to bed without saying "I love you." Terrible dreams. I slept like shit.

This morning he wakes and apologized. Says it was all him and he just kept wanting to push the hurtful truth aside.

I am taking him to the doctor's today. I don't know what is going on, but I am scared. He had an MRI at the start of this month. I am far too aware how fast a tumor can grow in 4 weeks. 4 weeks of his anti-seizure meds being tweaked, and I think he's still having them. He complains again of 'cotton brain' and feeling like his limbs are not part of his body. Maybe it is not the right med anymore, maybe he has too much, too little? I just know something is off and the numbers right now just don't hold hope. 24 months in with GBM 4.

I am beyond terrified at the thought that it might just get worse from here on out. It is terrifying to not know, and the knowledge itself as any of my nurse, doctor, or brain tumor readers will agree is not the lightest thing to bear either.

I've also made the decision to talk with his doc about some kind of Hospice nurse I could get to be on-call here. His doctors are great, but they are all M-Sat kind, unless he goes to the hospital. Which, he really really really does NOT want. Having a nurse on-call who knows his medical case would be helpful for me, and as I'm the caregiver, this one is my call. So far he seems to agree with me on it, but we will see how he reacts when he has to meet the RN.

So, birthday week again. And again, I'm here wondering if my husband will live to see it, and outside of a hospital. Yes, that's one worst case, but this is the worst of brain cancers. The tumor WILL come back at some point and likely kill him, or lead to his death.

I dislike feeling guilty that I want the focus to be me for one day, my 25th birthday, in- well, a year.

I was hoping for one day of not feeling like a burden, for having value.

Birthday wish?

Never ever gonna happen- Ground Force shows up and gives me a new garden. I still don't have one after ours was destroyed in May/June.

Might happen- Fox releases the rights and I get Freakylinks on dvd/blu-ray/VHS

Could happen- I get birthday cards. After my grandparents died, they pretty much just all stopped. I like cards.

I'm guessing I won't know more about Wash today, he'll probably just get blood work done, maybe an EEG.

I'll keep going, but some days, it takes me a long while to remember why I do.

Shut off

I had lots to say the other day but it seems to have all left me.

We had a good start to the (Jewish) New Year with my family having dinner the other night. Yum. My mum picked up some honey-cake for us too.

Aside from just wondering what service next is to be shut off (we lost internet earlier this week and got it back with some help) and worrying about that, my brain is stuck on Wash. We went to the doc's this week- his ENT to check on the follow up for his eye cyst. I was freaking out as I had received a bill from them for $146~ from his first visit and I couldn't pay that or whatever they would charge to see Wash this week. Thankfully we both got some good news from that trip; the Billing dept had put Wash in as 'No insurance self pay' despite his insurance info being on the paperwork *I* filled out. So, 3 office staff later and two people in billing it was cleared up and erased. Small favours.

Wash meanwhile was treated to a less invasive scan of his sinus cavity and told it was NOT a cyst, or even a tumor. Just inflamed scar tissue. Apparently he broke his nose some 20 years ago and that's just how his head looks in a MRI. Thankfully he didn't need a biopsy, or worse more surgery.

He's just been distant and cranky lately. I ask him for help or to try something or he asks for guidance and then it just... gets ignored. Forgotten. I know that's the result of the cancer, or tumor, or surgeries.... I still get disturbed by it.

There are some other issues brewing as well, but not anything I feel comfortable talking about yet. Basically there have been some statements come out against Wash having comforts, or a Quality of Life- especially if it costs ME anything. To some, I guess his happiness at the end of his life doesn't matter just how much he "costs" to stay alive each day.

I have some ... anger issues, at this way of thinking.

Wash just turned 27. There's a 1% chance he will see 30.

To me, his quality of life is paramount in importance.

It's his life and death. He gets to decide what makes him happy while he can still FEEL happy, and he gets to decide when the pain is too much to go on anymore.

I get so tired and depressed having to explain this to other human beings. To me, it's fucking common sense.