I stayed offline pretty much the entire week. It was all too much for me; the news, the hysteria, the worry...
I spent most of this week inside my own head. Searching for that little space of comfort. I admit, I did not find it.
Wash and I this week have been bouncing back and forth between wanting and trying to make a future of some kind for maybe one of us, and seeing the harsh realities of what is to come with this disease. His communication is declining. Even when he is "clear headed" as he describes it is getting harder to follow his logic, train of thoughts, or even for him to complete a thought.
This pains me so. I can try, but I cannot fully grasp how much this hurts him.
We've been rubbing against each other as well- tiffs for power. He is sad and perhaps getting around to accepting his disease and mortality, but he still forgets that he does have limits now. He wants to go jump in the car and drive himself over to a store or to play games.... and he just cannot now. He can't drive. It's been me for the past.... months. He can't remember always to check a list when he goes shopping, nor does he have the frontal brain to reason if he has to decide between more than one option or choice.
I need to be more patient. I'm exhausted and I think that's an excuse for it. My brain keeps hoping, perhaps expecting him to get "better", to go back to the man I married. And I have to accept he is gone.
I still have Wash. I still have parts of him, and he still has some memories. But I have been deluding myself if I thought he was the same person. He's not.
For that matter, neither really am I.
We have both had some good moments with therapy- getting at the root of some of the issues, and for me clarifying which are related to his brain cancer and surgery and what might not change. I love Wash, but I separate off the parts that hurt me the most; such as his constant and small pathological lies. His brain is doing what it thinks it needs to be doing but it takes him a while (if ever) for Wash to really realize that what he said was in direct contradiction to what his actions were- ie: a small lie.
My feelings get all swirled around over this. I know I have to be more patient and I know I have to double check every single thing; I just cannot rely on his brain. For that matter, neither can he.
The next MRI is in a week. Part of this may be his normal depression cycle starting before the MRI like always, or maybe this time it is different.
He is in such an odd place right now, we both are. He has made it past the point when most GBM patients have their recurrence or simply die. But even at this many months out, very optimistically we may have 3 months left or if he is blessed maybe 3 years. We just cannot know. Schrodinger's Tumor.
So there has been lots to think on and occupy my mind for the past bit. On top of all of that, our neighbours are being little passive aggressive nitwits and sadly I can never get a photo of them doing it! They leave the best little notes and lies outside our door stoop. A "We don't even smoke!" sign with a half smoked cig attached to it... ah, life.
I need a safe place. I dream of having a closet I can climb into again like my last place. Mine here are too small and cluttered and the crawl space is home to my bone/human remains collection (all legal, I used to do anthropology and forensic work) so that's filled. I long for a small place, soundproofed, carpeted, dark, warm. When my Aspies is hurting me hard that's my escape, alas it no longer exists. I freak out around certain loud noises. They feel like sandpaper rubbing across my brain- a hurtful and violating feeling. Too much stimulation or sound or light can drive me to a breakdown.
I have to say, dying in Arizona is fucking hard. -If you are poor.
He's still just 26. This might be where he wants to die, but not when or how.
I know he is scared of what is to come. I am too.
My world feels like dream bubbles popping one by one. How long can it last?
What happens to the dreams, the hopes when they pop and just fly away?