I'm spending as much time as I can today with Wash. MY Wash.

His personality is back and bold today, he seems to be better rested and in a better mood. He is joking, and mature, and able to really speak today.

I'm beyond happy. I've missed my husband so much.

I have no idea how long this will last; will he still be here after his nap? Tonight? When he wakes tomorrow?

So, I'm trying to just stay in the moment. He is happy watching "RuPaul's Drag Race" and "Pineapple Express" right now. He's laughing even a little.

We're also playing "Fetch" with Leto this am.

Brain cancer sucks ass. It has stolen so much.

I feel like in this moment today at least, I have the person who loves ME is back.

For a while, we just held hands.

Summations

And THERE is it. 2 plus hours into a not-fun-at-all talk this morning, continuing from last night, and Wash has said it out loud, again.
"Because I need to DO SOMETHING, MAKE SOMETHING of value, or why else stay alive? I'm worthless just existing."

He truly feels, believes, and was told from a young age on, if he cannot be "productive" in society, he should just die. [Why yes, he did read a lot of Ayn Rand]

He's already spoken to Hospice about this before, and his Chaplain and Social Worker, and Therapist have all said that is not true, but he really fucking believes that if he cannot work and get a paycheque, he should just fucking die already.

I told him earlier the least he could do today was to be honest to himself and us around him.

He's been so verbally abusive today.

Brain cancer can suck on Sideshow Boob.

---------------------------------------------------------------------------------------------------------------------------------------------------------------------

So we had some nurses come over this afternoon and talk to Wash, and he spoke very honestly about his suicidal thoughts and wishes, but was able to say he would be "safe" for the next day and not an immediate danger to himself.
The nurses adjusted his meds, and had a social worker come over after they left; she talked for about an hour with him. She was able to figure out he was triggered into this most recent cycle when he was on the computer last night and saw a little side-ad for architecture college degrees.
So, we talked of a few ways to help when he was triggered, and how to distract him from the self-harming or suicidal thoughts.

Our friend N. is coming over to take him to a burger place for dinner, and my brother is coming over the evening to help me watch and distract him. I still want someone to sleep over with us tonight though, and someone in the morning.

So.
Hospice rocks, cancer sucks, and this is emotionally draining. Also, my intestines hurt again.

---------------------------------------------------------------------------------------------------------------------------------------------------------------------

Wash has said he is ok with me posting these portions of my more private entries from the last day.

He wants people to see what it is like.

He wants others to know what happens, physically and mentally.

Even in his most trying times, he wants to be an example, and it breaks my heart he cannot see what an effect he has had.

Eye of the Hurricane

I had a Migraine appear yesterday. This was about my 5th ever- I started getting them a few years ago when I turned 19. "Painful" and "Horrible" are very light words for this.

It was as intense as my gallbladder melting. It felt like Athena trying to hack her way out of my head.

So, Wash spent almost 4 hours playing with his Hospice Volunteer yesterday and we had Andy* and another girl-friend of mine come over for Walking Dead BINGO.

I'm going to try to write about Sunday morning in a bit. It was a hard few hours; Wash did not know what day it was and was so aggressive to me when I tried to tell him that it was Sunday, not Saturday. He remembered what happened but just could not put the TIME together with the ACTION. It was a real hard startling chance for me to see how his brain cancer, GBM, really effects him.

It was painful for me, in more than just his yelling or his nasty Not-Wash words.

I hate seeing him that confused. That hurt. That scared.

Venting

So I had asked Wash to do ONE thing Saturday (make a call to an automated number to find something out) and he (should have known) did not do it. I reminded him first thing when he woke today about it and he FLIPPED THE FUCK OUT on me. He thought today was Saturday and I was messing with him. He remembers "yesterday" but has no association anymore with "when" things are; the days are now a concept to him it seems; even having calendars around doesn't help much.
I talked rationally to him for a bit, but I'm really not sure how much he understands or how much he really comprehends right now.
I cried for a min in my bedroom. He is not the same, he is not "himself". The man I love comes and goes, and most of the time a very selfish and shell of a person is left for me to just literally take care of. I am and sad and miss my husband.

Some mornings are just shit.

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.