Giving up

Starting this entry has already taken me back to 2011. Having lunch with mom. (We did do this quite often). I think back when simple things like this would just make her smile. Come out of her shell. Laugh. And smile. It was always something to see. Gap or not, I loved to see my mother smile.  I loved to see her so loving and caring. And just. Brave. 

A year into the cancer diagnosis, it was slowly unraveling mom. It was easy to see. The sheer exhausting in her post posture. How she spoke.   She would always have time to talk. I’m the garage while we smoked cigarettes and drank coffee. As before our conversations were more light hearted… now they have become something else. Met manifesto of what’s wrong. How’s she feeling. Why she is so angry but at the same time calm. 

The cognitive decline was the most heartbreaking thing. My mom was smart. Quick. Whitty. Was always 1 step ahead of you. Able to form complex ideals for complex things. I think that’s where I got my brain from. 

As the first chemo/radiation happened mine calmly walked in, but was by doing so hot on the way out. She needed a wheelchair because of the nausea. I got her into the van and just immediately asked her that we aren’t gonna go anywhere u til you feel good enough to go where you want. “You can’t take me where I want to go”. Knowing my moms humor I was already think up her next smart ass punchline. There was a long silence, she looked at me straight into my eye and said that she loved me. Wished that she could have spent more time with Emily, Andrew, and me. I know those two where pretty unfluential when they were born. 2016 came quick. I was scared shitless. I didn’t know what to expect.  At this point I started crying. I asked mom if this is all “worth it”. She never answered me. She just looked at me and said that she loved me very much. 

As each visit was done and completed. This funny that that’s was all just a precursor of what’s to come. Not for her, but for me. 

Moms spirit slowly disappeared as the days went by. She would always do the best that she could do.  She knew her limitations, but went beyond them as my much as she could. I would always ask her if there is any thing that I could do. She always wanted to just fall asleep together. I was exhausted too. As trying as this is, witnessing my mother slowly change into a different state of mind periodically was one thing that tore me up inside. 

The months came and went, but there was a point that min pulled me aside and told me that she’s done. She’s quitting. “I’m sick of the doctors, I’m sick of being sick”. “All I am at this point is a homebody with no place to go, and all I do is pay medical bills”. My mother’s cognition at this point is rapidly declining. I had a feeling it was coming soon 

I asked work to just let me work from home for the time being. The end was coming. The final week at the house was. Nauseating. I felt sick the entire time I was there. As family would start to argue , I just sat in the living room with mom. Rubbing her head, shoulders.  Whatever I could do to just give her that break from what’s coming. The cancer at this point had gone to her brain, and other important spots.  Days

At the end of a second week, I’m exhausted. Mom. Family. Everything. I wasn’t taking care of myself at all. No good, sleep. Wasnt drinking. So yeah. My body is going to be in a great spot soon.  Mom seemed stable for the night. My emotional tank was at the end, everything was just…. Gone. If felt like someone put me in a black hole. No matter what I did. Didn’t matter. 

My body was done. So my friends took me up to their place to just clear my head. I blacked out from the exhaustion. Hit my head on his car. Fucking great. This is what’s starts my nightmare of health problems. 

The next day my mom passed. Yeah. I wasn’t there for it. But I was there. It was so hard to see the strongest woman if ever known, just to end up like that. It was miserable. I wanted it to end for her. It saddened me. 

The light of my life has gone out. 

But with that in retrospect, I feel l Ike the history books are repeating themselves. I’ll be honest, I’m not doing good. The mouth stuff that keeps happening is not going away. The burning. The pain, the sandpaper mouth. The heartbeat in the middle of my jaw. Smelling cat piss from time to time. The constant nausea. The sheer and udder fatigue I deal with on an hourly basis. The non stop batter of this is your life now. Congrats. 

I think back to mom. How she coped. Pushed through. Survived. And still made banana bread. 

As much as I don’t want to, I am trying to follow in her footsteps on trying to overcome “whatever” this is. It’s been one nightmare after another. Sepsis from 2018 till Mayo. The wide array of idiotic doctors that should t be doing what they are doing. The immune discovery was huge, but so little, so late about my teeth. It’s depressing to no end that this could have all been prevented. Easily. But again doctors are smart people. They know what they are doing. Once the immune therapy started it was just the tumor left and I’m out of this. 

Nope. 

The recovery time of that surgery was at least a month… I had to go back to work in 2 days. At this point I have no idea what’s even going on anymore. My brain was just a bright white blank sheet of paper. As work was work, the septic episodes came again. But disappeared. After I pulled most of my teeth, then I started to think about how to get a solution in. Implants. Worst idea I’d ever had. With this asshole fucking things up that bad (didn’t have any of the issues I have now prior to the procedure) my life is… done. 

Let’s see here. I sit at home all day. Working from home. Maybe eat something maybe just skip food entirely. Why?  It hurts when I eat, and the things that I can eat are soft, mashed, or spun through a food processor. I get to eat paste for the most part. Kinda disheartening.

The constant swelling of my face and leg. Unsolved mysteries 2021. It will just start swelling. It comes, it goes. No real causality. Other than it will do it when it fucking wants.  With that, the pain. Endless pain. My face, cheeks, sinuses, chin, jaw, and neck experience swelling and pain, and lastly the nausea. All of this just makes me sick. I’ve only got 9 zofran left. 

The lasix seems to help, but I think it’s just helping with the swelling. Not what’s really going on in my mouth. I still firmly believe that I need vancomycin. Everytime I’m given a dose, the swelling and pain starts to go away. 

Doctors are just too afraid to practice medicine at this point. 

How am I?

I do t know where to even begin. I’m probably the most unhappiest I’ve ever been. I think my limit of frustration and patience both wore out at the same time. I do t get to do anything other than sit in the same room, sleep, eat, repeat. It’s monotonous. Trying to juggle dr visits have been easy, however, the attitudes of the doctors make it quite clear they are not going to do anything g for me. Oh you need to see xyz specialist. Or this other guy. Fuck. Can you just try for once?  I mean you are a doctor, I have lots of data, just need someone to go through it and map out what this is. All they have to do is a biopsy of my mouth and they will figure something g out. 

With all that in mind, I’m so exhausted to go anywhere awesome for fun. Instead I get to go to Target. Or Whole Foods. And that’s it. Almost prison-like.  This is definitely not by choice. I’m petrified to leave anywhere that they won’t ha e hospital services nearby. So I’m basically suck at home 

I know my wife is unhappy. She’s been yelling at me more. Nitpicking at things. I’m trying. I really am. I can’t remember anything to save my life anymore. My short term memory is gone. Pretty sure it’s related to whatever the fuck is going on with me, but I can easily tell she’s not happy at all. Since the kidney stones and everything else, it hurts every where. I’m not able to do the things that we used to do :(. It’s not that I don’t want to, it’s that I don’t wanna pay the consequences. So I have that going for me. I don’t spend time with her, not intimate, I tell her I love her as many times as I can durning the day, but I know at some point this is going to be over. 

I feel it coming. I mean she had to take care of me right now. When you should be out having fun and partying or climbing things and just living life up.  Nope. You’re home with me. 

I’m embarrassed at myself. I have no teeth. My body is severely broken. Why even wan “this”. There’s nothing here anymore. It’s all been taken away. My emotions are just gone. Filled with complaints about xyz with my body. 

It’s only a matter of time and she will probably leave. Breaks my heart to say that, but who would want to take care of someone who is cronically lll 24/7. Nobody wants do. That’s a fact. 

I just don’t want to do this anymore. Co start IV’s, feeling nauseated, ig infusions, insert whatever medical thing I’m getting done. I flash back to my mom at lunch once. When she decided to stop everything. Had heartbreaking as it is, that sacrifice is something truly selfless. I feel the same way. I just want to stop. Let what’s coming to just come take me out of this so that I’m no longer a burden to anyone, and that the people I love the most don’t have to worry about anything anymore. They can live their lives, and for some maybe find someone new that can do all the things I can’t do. I’m sorry I’m writing this this time, but this needs to get out in the open. 

I did ask her tonight if she was happy, never got an answer to that :(. I know how this ends.