Bell, Book, Candle

Days sometimes begin to blend together. Wash is still on a late night schedule, so when I wake at 6am, after getting down around 3am, it makes for some long hard days.

He had a shit fit this week over the way he sleeps; we've been to specialists and his doctors who have all told him with his brain issues he needs to sleep with his head up higher than his body. This does not suit Wash well at all; he prefers to have his head as flat down as possible and his legs left up- pushing all the blood and excess fluid into his head.

So, he had a HUGE shit-fest about it on Wednesday- even pulled the "If I can't sleep like I want to, why should I be alive?" card. So, after making a plan with his Hospice nurse- because I remember his side effects even if he does not, we all said, "Sure, Wash, sleep how ever you want to." decided to test it out for a few days.

He looked like a chipmunk. His face, his eyes; they were so swollen. He had horrid headaches and light sensitivity. He also had a complete memory black out; whereas he normally is not aware he's missed something or forgotten, with this, he knew something had happened- but could not remember ANYTHING for the first hour he woke up. That scared him so bad he's gone back to sleeping how the doctors tell him.

I'm sad he had to learn the painful way, but with his memory issues, he just doesn't TRUST me all the time, even when I tell him I'm trying to save him physical pain. I don't know how long he will remember this most recent episode, but it's been about 3 days since and he's not make a fuss over sleeping upright yet.

We both had a talk with his folks on Sat; I spent about 30 mins in the morning going over with them how he is, how the week went, the bad issues. I pulled up Skype for him a bit later in the evening for him to talk to them. Lately he has been having some speaking issues; he mumbles a lot, speaks softly, and says things under his breath he is unaware of. So, talking on the phone for him can sometimes be a challenge for others to really understand him. Again, I think since I'm always around him I don't notice it as much until someone points it out to me; but he does mumble a lot more now and it's harder, I can tell, for him to find the right words, and get them out.

I'm starting to feel a lot more numb. I wonder if it's my own way of preparing for what is to come. I have to take things one day at a time, it's just too hard and complicated to try and have a future more than 7 days in advance, 30 months of terminal cancer has just done that to me. He doesn't understand time at all, it all comes back down to/on me.

At least lately I've found a bunch of good (some old) action and adventure movies for us to watch. It lets him laugh, or forget his issues. It's been nice to hear him laugh lately, he does it less and less.

I hate, I hurt to watch who he is slowly draining away from him.

Brain Cancer just drains away the man I love.

Frak cancer.

//Hospice Helper P. is coming over this afternoon to play with Wash for a bit and help him make some cardboard eclipse viewers (on the off chance we might be able to see it this sundown). Wash loves shit like this, but he's not been able to remember it. I'm hoping we can see it in AZ where we are; likely this is his last chance in his life to see a solar eclipse.

Missed

Had a few good days, some good moments this weekend.

I can't yet figure out if I should keep up my small journal/notes and publish them, or limit to when I can make a real fleshed out post?

It's hard to watch him die. To watch him slip away bit by bit. He had about 3 days/nights/period of hours in the week where he's been very "Wash". His personality just keeps fading. He comes around for friends, to talk, and always to play, but less and less.

Lately he's been making "jokes" about suicide. Hospice says this is his way of coping with some issues relating to his coming death. It's so so so so so tough for me to hear his "jokes". I cannot laugh or see humour in them.

It pains me to hear from so many people that they think I'm getting burned out or over-worked. These are almost always the same people that don't offer any real help or solutions outside of, "I'm worried."

I'm frakking worried too, but there's no one else. He loves me, and a part of his brain hates me too. He sees me as the "reason" why he's in this place, why he has so many rules, why he can't instead of being able to remember or place that emotion properly on his cancer, not the person who has to keep him safe from himself.

It's hard.

Last week I fainted because I ended up going 30 hours without eating. I eat about once, maybe twice a day now almost always after Wash goes down for bed, 10pm-3am. The rest of the time I'm watching him, which, even if I have a moment to cook, prepare, and eat a meal, I'm almost never hungry. I'm just so stressed watching and caring and dealing with his hatred and anger at me, I don't want to eat. Also, a lot of the food I buy is for him. I forget that I'm a person too.

I yelled at my brother G.* this weekend when he called right as I was heading into my first shower in about 5-7 days. He wanted to "chat" and I wanted to take advantage of my 15 mins alone to shower for the first time in a week. I guess for him it's harder to grasp since he lives alone and showers for 40mins every morning.

It's becoming so hard for me to explain to the people close and around us just how much Wash's cancer effects me on so many levels, how I'm so tied into him and his moods for the mere fact of being around him 24 hours a day 7 days a week for 30 straight months. Even most prisoners get a "break" from their cell mate daily. I don't like it, but I can understand that Wash's anger and rage are going to come out on the person around- me.

Dying is not easy.

Sighs

I let him sleep in for more than an hour today.

Did not help. He woke up physically rested and feeling "strong", but mentally he is off today. He has control issues and keeps showing some obsessive behaviours. He's picking at parts of his face and back and is getting to be a bit bloody. I'm going to speak to his nurses, I can't make him wear gloves every hour. I'm also watching him a lot closer, which takes away any real chance of "free" time for me, I'm stuck being close enough to him to make sure he doesn't dig a hole in his body.

I know it is not him, not my love. This is a side effect of his meds, or scar tissue, or something else. I can still hate it though.

He's so negative and nasty. He thinks he is being funny or clever, but he is just being a horrid human. The things he says... sometimes he is aware of them when I point it out, other times he literally does not remember the words that just came from his mouth. He will attack the people on tv, that is one of his more common ways to express. Gender, sex, race, all these things that I know he has never had an issue with in his life, but he sounds like some horrid extreme opposite of who he was. It always takes me by shock. He's better about not saying things out loud with a few people around us, but I see it come out when he is out in crowds. It's amazing in a horrid way how physically damaging the brain can change people in such complete and fundamental ways.

I always wait for it to pass, and for the most part after a few hours or a good sleep, it will. *My* Wash will come back, along with his sensibilities and his true kindness. Brain injuries and cancer can be so devastating and challenging.

One of the downsides is when he gets in these kinds of moods I get so tired from having to be so patient when he says things that make my head want to burst. I have to be patient and kind, and unlike being polite to a debate opponent I can't just tear apart in front of him WHY it is inappropriate/not kind to say those things. I have to see if he even knows or remembers or is aware he made the statement, tell him, wait for him to calm down, and go over why it is not "ok" to say out loud, or why he may get weird looks if he says it out loud and out side.

I love him, I hate the parts that have been stolen away by cancer and surgeries and a big fucking tumor.

Meanwhile I wait for an apology 8 days overdue. [Not Wash] People I deeply love seem to hurt me the most when I'm let down.

More later, pill time again.

Mires

I have not been wanting to write lately. More emotions in me than real articulate thoughts.

It is beyond hard to find let alone have a voice. I feel like I've been pretty silent for years and now when I'm told to speak, and speak up, it comes back at me as being "selfish" and "whining". I am genuinely confused.

I'm scared. I'm scared mostly for the future for all the uncertainties. I'm scared of being put in a situation with no reference and expected to know where to go and what to do. I'm so mad lately as well, that life and our future is so gorram unfair.

We had two wonderful days of Hope, and then weeks of waiting for bad news we both know is coming. Brain cancer, two brain surgeries, a year of chemo, and too much bad personal news in 2 years.

It's just so much hardship and disappointment and unfairness, topped over and over.

It seems like I'm being told it's wrong to feel upset at the fucking unfairness. I just wonder when it will end? What if any point is there to keep going, to keep trying when it never works?

It's a hard day, and one with setbacks.

I've taken him back around to his follow-up doctor visits and though it still seems to be in the "not a brain tumor" category, there is still something off. His doctor thinks he is still having some kind of seizures, I guess ones that are just in his frontal lobe- his body does not seem to be as affected, but his emotions are just... uncontrolled. So next on Wash's to do list is get an EEG done (he may have to have more than one but I'm not telling/reminding him of it.) and a 'pressure' test to check the inside of his head and make sure his CSF is not too high. He will then see an Epileptologist (someone specializing in Epilepsy) and they can decide to change his anti-seizure meds, or perhaps put him back on low dose steroids. Not sure what yet, but he's on the right path to get help now.

Sadly though, this was I guess not the news Wash was wanting or expecting. I think he believed he would be told he was "fine".

He's not.

I am just tired. Physically and emotionally. Happiness seems to me, seems not to be.