June 19th Update

June 19th Update

As a lot of you know, I had a big surgery on March 11th.  I feel like it’s been long enough now that I can sort of… suss out some of the deets and tails and also details of what happened there.  

So, back in the original cancer resection (that means take it out) surgery, they basically left a big hole between my left nostril and my mouth, where the cancer was.  So the FIRST fix to that was to make this weird plastic thing and sew it in.   So I wake up from the first surgery and I have like… no fucking idea.  It’s basically a foreign object.  I THINK this is the first one.  Again, to be clear this is the 2019 surgery.

OK, so you get a feel for the size of the hole… this causes, in my experience, three MAIN problems.  I’ll be as concise as I can: 

1. Eating: Fucked

2. Sinus Function: Also Fucked

3. Speech: Completely Fucked

Additional Issues

There are also things like… what’s that smell?   I do not know.  I have no fucking idea how like… 30 or 40% of things smell now.  Bad cologne I can smell so much that whoever I’m with will often be like “James please shut the fuck up you’re going to end up in a fight with those people” because I honestly get so upset (and loud) about people just… smelling too much.   Especially when it’s in the name of smelling “good”???  It’s so fucking stupid.  Please don’t wear excessive cologne.  The people 12 feet away from you do NOT need to know what you smell like.  

Toddler Stuff. Runny Nose. Getting Real Grumpy About it.

Also, and I just mention this because it didn’t make the top three, your nose will drip at like the worst fucking times.   There is very big and difficult mental thing that comes with all the cancer stuff.  I do not particularly like the way I look without teeth.  There are so many things that are challenging, but getting all ready, and then sitting down or accidentally leaning forward too much and having coffee drip out of your nose onto your shirt is like… upsetting.  Especially when you’re already wrestling with being too fat or too skinny (been both in the past 5 years) and you don’t have teeth and you’re just BARELY pulling this outfit together and now your nose just fucking dripped coffee on it.   Short version, I wear brown and maroon a lot. 

March 11th Surgery

So this surgery on March 11th.   Took some bone and some skin from my leg and worked that into the… hole that was left from the first surgery.  This was a pretty ambitious thing.  The recovery was tough.  I don’t like to think about it honestly it chokes me up.  I hope I never get that fuckin cut up again.  So, I wake up and initially I have a trach and all this other shit that’s just short term from the surgery, but once I get that trach out I am told by my family that my voice is already significantly improved.   So that was encouraging.   

Where we run into problems.

Here’s where one of the problems comes in.   The number two thing that sinus function?  Yeah I’m like… a mess up there.  Huge mucus stuff just like… as bad as you can imagine and also remember my sinus is now like 12 square feet so the shit is SHOCKINGLY large.  Some of the things I have blown out of my nose and spit out of my mouth.    I mean.   It’s fucking disgusting to even think about.  Why are you reading this?  Just kidding.   Please read on.  

So while problem number three (speech) seems to have improved, I am VERY concerned about this insane mucus production and what happens when that’s all just like… sealed in there.  I mentioned this to my surgeon and he sort of went like… hmm.  Yeah.   It’s weird how fucking difficult it is to communicate with medical staff… especially when you’re on to something.  

Back to the Back to the Flip Flap

Anyways.  This flap.  They took bone and built a line for a jaw (which is completely done terribly if you ask me but I’ll save that for another time) and then put a big piece of metal to hold that together, and then eventually screw teeth into.   Then they cover all of that with skin from my leg.  

They Covered the Hole But Now The Flap Shrunk so the Whole Hole isn't Covered

After a little bit of swelling goes down, the flap now no longer fully covers the entire hole.  Now food is getting stuck in there, escaping into my sinus when I swallow, and so on.  This needs to be fixed.   We also need to cut a canal in the skin covering the metal piece to make room for the teeth.   Essentially I have a gum line, and they’re gonna cut into that to put teeth there.  I don’t know if that’s medically accurate at all, but in terms of placement, that, my dear reader is what’s happening.  

So that’s the purpose of the June 18th surgery – to cut into the gumline to make a place for teeth, and to fix the holes in the back of the “flap” that’s not doing it’s job, which is to separate the sinus from the mouth.  

Been at This Forever

I have so so much invested in this.   We are getting closer to me getting teeth and like… it’s supposed to be coming together.  Even though it’s going to take some time, at the end of this I’m going to get teeth.  And now, grand scheme of things, it’s just another week.  But man.  This doesn’t feel OK at all.  

Anyways.  I wake up and they tell me that they couldn’t do the surgery because I have so much infection in my sinus… Presumably from the overly functioning mucus stuff and then it’s all sealed in there and basically I have been even MORE uncomfortable for the past two months and we are not really getting anywhere. 

Oh Good More Medications

For context, I am on like… two blood pressure medications, a recently doubled dose of some trash antidepressant that does not work, methadone for pain relief, a beta-blocker for anxiety and like two other medications.   I have this med I’m supposed to take before I go to bed every night and I forget like… literally every fucking night.  It’s frustrating.  I need to get more routine in my life.  But… like… yeah, my life is fucking messy.   Anyways.  I go in for surgery, already overwhelmed and miserably failing at my medication routine… and now I am being sent home with three antibiotics.  One is a lube I stuff up my nose… FIVE FUCKING TIMES A DAY.  Oh.  OK.   Then I have two other meds that I take twice a day.  One I can not take with other vitamins, I do not know what that means, also I have to take it with food and I can barely eat anything.. I overly rely on yogurt and cereal and stupid basic shit that a toddler eats.  One I can not take with dairy.  Ope.   So there goes the cereal option.  Like… fuck.   And it’s manageable.  I need to wake up and eat applesauce and take my medication it’s not the end of the world.  

Getting a Little Dark with It

The larger problem is that I feel like I am just generally failing at self-management.  I mean.   Fuck my intent is for this to be public so I guess I need to be careful exactly how much I say here… but like… I am just fucking up my life because I can’t do basic shit because my brain is just overly taxed with worry and medical appointments.  I now have serious problems with both the MN dept of revenue (IRS problems pending!!) and a major problem with my car that I do not know how to fix.   I’ll leave it at that.   I feel like I am fucking up the things that a 20 year old would fuck up and then figure it out and fucking grow up.   It’s easy to be hard on yourself.  

OK well this is getting equally long and depressing.  The person off stage is doing that “wrap it up” cue with his hands quite violently.

I want to express my gratitude to everyone who has had kind things to say and has supported me in all of the ways I have been supported.  I appreciate it more than words could express.  But I will try. 

Being a small business owner is… difficult.  It’s very rewarding at times, when things are going well, but it can really fucking sting when they’re not.  There’s no disability payments.  You just… fail.   And you try to not personalize that too much, but it’s pretty black and white with finances sometimes.  You’re just failing.  

And there are holes everywhere.   In my fucking mouth, in my finances, in my mental health, in my ability to hope, and fight.   And that’s the support part.   That’s what gets filled in and it means so much to me.   Asking for help is not easy.   I’m way too proud and that’s not a very compatible quality when you get cancer.  But… here we are.   I appreciate everyone’s help so much.  Thank you.  

I also just want to mention, when you have surgery obviously there are a bunch of stitches and they all dissolve eventually but before that, they’re like… both literally and figuratively “hanging around”.  It’s uncomfortable and just… feels fucking gross.  No one wants stringy stuff in their mouth, and let’s be honest, you do NOT want to see stringy stuff in other peoples’ mouths.  Gross.  So the weeks turn into months and I’m like…still bothered by something.  And now all the stitches are long gone so… what is feeling like this?   Fucking leg hair.  It’s the skin from my leg that’s in my mouth.   So honestly, like… if you haven’t already given to my gofundme maybe just consider going and giving me like $2 just because you do not have leg hair growing in your mouth.  It’s just a small no leg hair in my mouth tax.   Not a big deal.   Catch me shopping for laser hair removal places that are open to having conversations about what we can and can’t do.  

Ha!  This was all a ruse to get you to my go fund me page.   But really.   The leg hair thing… c’mon.

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