Sasheen

I don't know anymore. Life is pretty harsh. Things are going on that I'm not journaling about, I really should to help me process, but fuck that.

My dad is... nice? Ever since the Christmas party we had without him, he's been calling me for checkups on my husband, offering money, to go shopping, all in all he's been calm and helping out. Didn't even freak out when I told him I lost the safety deposit box key. Just shrugged his shoulders and ordered a new one. I mean... usually that would result in hours long yelling and depreciation of me while I tried not to break down. I mean, we moved houses twice since my mom died, who knows where that stupid key got to?

I Feel sad, depressed, anxious.... the bugs make me move, make me get out of bed, make me eat, make me drink, make me see the sun. I just want to curl up under the covers and cry and pretend to be dead. If I stop drinking and eating, I'll stop having to go to the bathroom, and I'll be happy. Just leave me there.... but the bugs.... the stupid bugs.... making me get up out of bed, making me see the sun... I don't want to, but here I am.

Do you know what I wonder? I wonder what it's like to die alone, really alone. No family, no friends, no support network, just slowly failing health, slowly failing finances, slowly failing mind... all alone...

Why do I wonder this? Because I don't know who's going to have the patience and understanding to take care of me as my mind goes and my body quits. I can see myself asking for MAID out of desperation and loneliness, the peace of death so much more welcoming than the emptiness of being forgotten. I know I'm going to be forgotten, I am not memorable, I'm just a person you knew who said a thing and wore those ears or horns and smoked a joint. Can you believe I smoked a joint right there on the street? I mean, how cool was that! Or maybe you hated it, the smoke coming back to hit you in the face. Or maybe you liked the smoke hitting you in the face.... I have no idea, no one ever said anything after I asked. But other than that... what's to remember?

I'm nothing, no nothing to make people go "oh yeah, I wonder what's happening to Sasheen? Haven't heard from them in a while! They were always so quirky and fun!" Or whatever you thought of me.... because no one thinks of me....

I am..... not in a good place, I don't think.....

I don't know what to feel... I should be elated, ecstatic, joyous, that Orbis is doing better than they predicted, but I'm...

The more time I spend with him, the more time I want to cry. Is it because I'm realizing I'm losing him? Is it because, every time I see him, spend time with him, it's not my Orbis? It's not my memory of my Orbis?

I don't know what to do with myself, so I art. I art and art and art and plan on throwing it all away because it's all useless trash that no one could ever want....

I hate being awake. I don't know if it's my fatigue or my depression, but I just want to spend the day in bed with my eyes closed and just...... forget the day existed. Maybe my depression is adding to my fatigue. Hell, it probably is.

I've come to accept I'm probably autistic, too many things make sense if I am. One of them being, I don't understand my emotions. I understand the extremes, sorta, happy, sad, angry, but the nuanced emotions, and how they affect me? I'm totally a blank. Stressed, anxious, romantic.... again, I understand them, sometimes, when they're extreme and I'm about to freak out, but the nuanced emotions? The... "I'm having problems breathing because of fear and anxiety"? I don't.... process, I don't feel, I don't understand.... so I don't understand why being around my husband upsets me so much. Surely I want to build as many lasting memories with him as I can, don't I?

Ah... yes.... memories.... the chompy chomps. Those grotesque maws of flapping ripped memories, leaving hints or absolute abyss behind. I hate my memory. But whatever, I'm probably going to have dementia at this rate, and forget all about hubby a year after he dies.

I don't know what I'm writing, my world is spinning, everything just... sinks, like quicksand, so much at once, it's so fast, so fast, I can't keep up and I'm drowning, drowning. I need my medication fixed but they were supposed to call me me in January to do it, and never did. Just left a message to get them to get me in contact with my psychiatrist because they just.... dipped. Let's see.

Oh, yeah, and did I mention? My feet hurt and cramp. Like, toes curling up and foot curling up cramping. I know auttie's usually have loose ligaments from EDH, and my hips? Hella loose one way. But the rest of the entire of my whole body? Every tendon cramps, and hurts, and seizes, and I don't know if this is a normal fibro thing or not, but I in paaaaaaaaaaaaaaaaaain

My fibro is off the charts with all the stress on top of everything, and I'm just... trying to get by.... and dreading the day hubby lives full time at home and I have a bad fibro day, which is happening more and more often. I'm dreading curling up in my room and hearing him call for me and knowing I should sit my ass down and let my boyfriend handle this, but instead jumping to and biting back screams... because he needs me....

Maybe that's what's depressing me..... I don't know.... I just know I'm depressed about him coming home

Things are moving forward, and for once I have some positive news. My husband is able to open and close his left hand but has extremely poor grip still, lift his left arm and leg, and speaks so much more clearly. The treatments are working!

Now for the rest of the news.

He is taking three treatments to get to this level, steroids, chemo and radiation. He has about a week of chemo, and radiation left, and his steroids are being tapered down to nothing. He will never have radiation again because anymore and his brain will be Jello. He will only get steroids again as a last resort because of the side effects. He will likely get chemo again after a four week "vacation" where he will maybe get a chance to come home.

I'm still scared, I'm still sad, I'm still in mourning. I still see or hear or touch things that are sacred to our memories and I tear up, thinking no one else will remember, no one else knows, no one else understands, no one else can protect me the way he did.

My dad is an ass.

So, my MIL is visiting, and my SIL is coming this Friday with one of her sons so we can all have one, last Polish Christmas together. Hubby, of course, wants me and my boyfriend and his GF and his GF's BF there, as they have been insurmountable help for us during these trying times, and just our love of loves in general. My sperm donor, however, upon hearing that my MIL was planning a Christmas get together, said "If that girl (meaning my hubby's GF) or that boy (meaning my BF) show up, I'm leaving" and my MIL acquiesced to his demands by telling my hubby to tell me that my BF wasn't welcome because "too many questions". I told my BF, my BF became incensed with anger and betrayal because my MIL has so far been warm and open and caring towards him, but to turn him away at Christmas? Then the truth came out, and now he is on the warpath against my sperm donor

Generally speaking, my sperm donor is a horrid little shit of a human, but this time? Making *his* ***choices*** override the wishes of the DYING MAN'S last fucking Christmas just so he can be a big man on campus??? EXCUSE ME????

So, we talked about it, and BF and I are coming alright, might even bring the GF and GF's BF who we had no plans to bring, just to shove it to my sperm donor who will then have the lovely time of explaining just why he's leaving the DYING MAN'S last Christmas party. Because of love? Yes, because of love.

Fuck him and the donkey he rode in on with a waa waa brush

So... let's backtrack a bit....

November 11, Remembrance Day

I was at Orbis's bedside, where else would I be? And his surgeons came by for a briefing. Let us know everything went perfectly... but chances are very good it's a tumor, even before testing, they just can't definitively say what it is before pathology. Of course when I hear this, my brain just races to the worst because this has progressed so fast, he's using a wheelchair now, not allowed out of bed unsupervised, he's slurring and mumbling, can barely stay awake do eat, never mind complex tasks.... They say it's going to take 7-10 days for it to come back, and I wonder just what state he's going to be in, in ten days. They said they didn't think it was a childhood glioma because that would have presented in his thirties and he's in his fifties now, and they're actually not at all sure what it is because it's so unique, so they are eagerly waiting pathology. They guess he'll probably have to undergo radiation and chemo, and they upped his steroid prescription... which to me meant buying him a hecka lotta more second meals, because my man be hungry and hospital food be icky. But they did say his symptoms progressing so quickly were likely a symptom of the operation as it causes inflammation and the steroids would bring that down to previous levels... that that was the price we had to pay for answers...

He did not go home this day, or the day after, like everyone had said he would. The Occupational Therapists don't want to send him home until they are comfortable he can get around and not hurt himself and I am 100% relieved! I thought they were just gonna shuck him out the door. He's stumbling, falling, can't dress himself or go to the bathroom, and our apartment is not built to accommodate a disabled person! Heck, the doors don't even have the hand button things to open them! Anyways, he took a few steps with a walker today, which was amazing! He didn't fall down or anything even though he says the numbness is worse since the operation. And I am so scared again that they fucked something up inside his brain. They went from the front, for a central meaty part. He's definitely weak, and had to sit down after a few meters, but small steps I guess?

But that fear.... that fear that this was the last time my husband was leaving the apartment..... could it be true?




And now Today:


Orbis's biopsy came back early, this is not good, because for it to come back this early it could only be one thing, it came back as a glioblastoma. You can't cure a glioblastoma. You can try to buy more time, but that's it. That explains why in imaging from my husband's first admittance to imaging for the operation, the mass had grown, even with the steroids, hubby is going to die, soon, and it's going to be very very ugly. The doctor didn't say that, I thought that. I thought that hard. My beloved, soul evolved husband is going to die..... my best friend.... my soul mate..... is going to die.....

Tomorrow he is going to have a plastic mask molded with MRI and CT scans to get the tumor isolated, and then radiation starting next week. It's going to be every day for a 30 day run, then he's going to start chemo. Radiation doses will be very small and will only take a couple of minutes in a CT like tube, but it's quiet like an X-Ray. Side effects like nausea and headaches and getting tired should set in in week two and progress in week three.... How he's going to tell he's extra tired is beyond me, when he's sleeping almost every moment of every day as it is

I don't know what I'm doing, I don't know if I'm existing right or treating my partners right. My boyfriend is breaking down because his metamour is dying and he has no one to stably rely on for support because I'm constantly at my husband's side and his other partner is on the west coast, and I'm failing him as a partner by not being supportive enough or coming up with enough distractions to keep us both sane.

Someone, please, anyone.... break into my world and steal me away.

I was driving home from the hospital, and I realized I could just.... drive away. Drive away and disappear and vanish and lose all ties to every responsibility and every pain and ache and agony and failure and misery and just.... ***LIFE!!!*** behind, and never be found again..... then I realized I love my men too much to ever do that to them, especially now, no matter my pain.

But I suffer..... I feel like those witches in ancient times that used to get murdered by her town crushing her under stones. I feel everything just.... adding another stone. At first it's okay, then it feels comfy and even nice, but eventually it gets hard to breathe and I think I'm there.... Struggling... gasping.... but I'd never beg

I just... my best friend is dying... my husband... the man I chose to weave my life with, is shuffling off this coil.... and I can't even.... I'm not even..... I have no idea, but I don't feel it, and I feel everything at once at the same time. I'm so confused.

I feel nothing, empty.

I don't want to write, read, craft, watch TV, watch youtube, play my newly found passion of Animal Crossing or Stardew Valley... I just want to sit here and.... sit here. Let time pass. Feel it tick away inevitably as inevitably as the end is coming... Is the end coming? He should be okay, right? Will he? Won't he? My family doctor seems to think it's going to end horribly. My field medic friend doesn't seem overly worried, my nurse friend? The one I thought I could count on through thick and thin? She won't even let me tell her about my husband (Which happened over the last two weeks) because she doesn't have space for a trauma dump, so I don't have her input, or well wishes....

I feel alone, and empty, just..... floating, lost....

Is it okay to feel lost? My boyfriend is right there, my husband right over there, and I'm here, and I just..... I'm not here. Where am I? I Don't know... I can't find myself... I'm so lost, Googlemaps won't even work.... I wish someone could help me

So, yesterday, Orbis woke up with double vision, we decided not to worry and see if it went away. I called his family doctor and left a message however, but couldn't do anything else as he has yet to actually get a doctor. Well, it didn't go away the next day. That's when Orbis found a pamphlet his nurse had given him with instructions to call a number should his symptoms worsen or change.

I called that damned number

She asked if he'd been taking steroids, I said yes, she said it was a possible side effect, but that if he was having that side effect of the possible side effects we had to get his ass to the ER

We got his ass to the ER

Blood tests and EKGs and CAT scans oh my! The mass has not changed. The pills should be preventing this side effect, not causing it. The fact that nothing has changed in the physiology makes the doctor's scared so they're red tagging it and calling us back by Tuesday at the latest with a plan, or we're calling them.

Did I mention I can't sleep?

I'm different now. I'm sitting in a voice and video chat where people are eagerly getting ready to meet up with each other and party, and guess what, the invite is still open, and normally I'd at least be tempted....

Sometimes I'd go if a partner went with me...

Not anymore

So, two weeks ago, my husband's entire left side went numb, from drooping face, to partial paralysis of his arm and leg, he called out of work after the strike, and after Thanksgiving, so he didn't go to work on the 14th. On the 15th I made him go to the ER, the one at Sunnybrook, because it treated my boyfriend so well, and it has the best brain center in Canada.

They sent him home and told him he was okay to return to work.

He was presenting with stroke symptoms, but they said he was okay and fine to return to work.......

He stayed at home, sick from work, since then. Bumping into walls, dropping things, stumbling, falling, lurching, dropping, all and all acting like half his body was crippled. I screamed at him to go back to the ER, any ER, just get back to the hospital, he kept saying "I went to the hospital, they did what they could, nothing is going to change now" They didn't even take any images! Just sent him home with a promise that in two weeks he'd see a neurologist. TWO WEEKS!!!!! I made him an appointment with his family doctor, she immediately saw something was wrong and ordered emergency neurological tests..... that would be done in days..... that she'd get the response days later..... that she'd see him days later about the results..... then work on another plan of attack..... NONONONONONONO!!!!! GET YOUR ASS TO THE ER HUSBAND!

My boyfriend ripped into him that morning, royally, on the ride to work, when he got home, I ripped into him! When he said "But what am I supposed to say?" "HOW ABOUT I THINK I SUFFERED A STROKE?" He said "oh....." and went in his room

He went to the ER that night (the 27th), refused to let me go with him, wanted me to sleep. I did not sleep. They did tests, some were inconclusive, some... were troubling..... so more tests.... and this time they checked him in. More tests and more tests. They find a mass in his left central midbrain (his brainstem) it's weighing on the brains blood and water supply, fucking with his sinuses.....so we got that news. Then we're told to go to Sunnybrook for a radiology appointment on Friday. We checked out of the hospital on Thursday, went home, had some snuggles and..... yeah.

Friday, we go in.

We are told, it's inoperable, it's malignant and it will keep growing, they are hoping radiation treatment will shrink it and give my husband a few extra years.

A few extra years......

He's 52 years old

What just happened to my world?

12 Hours and the plane departs for sunnier, coastier, BC. Am I anticipating great fun? Oh yes, great, leaps and bounds of fun. Am I also anxious as all fuck? Oh hell yeah, hell heck fuck yeah. I don't even know where most of the anxiety is actually coming from, just overwhelming sense of "NO!" that won't go away, and I don't know where the NO! is coming from or what's triggering it or anything, it's just echoing and echoing and ripping past my excitement and calm and I am GOING ON MY VACATION DAMMIT! Screw you unfounded paranoia and anxieties!