#everything relating to my cancer or recovery i will label as badass battlestar bc it makes me feel cool

[mycelier]

My name is Simone and I would like to tell you a tale!

I will not have access to my laptop for some days more and because writing on my phone is kind of painful (physically, because I am working on hand mobility now), this may end up in drafts and taking a while to post. I am going to share what has been happening the last 2 months because I feel like everything went from 0 to 100 in the span of a few weeks and its been really, really wild.

So!!! LETTUCE begin!

For roughly 5 years I've been struggling to get a diagnosis on an extremely painful area of my arm. There was literally nothing visible; no lump, discoloration or any other physical abnormality to indicate anything was wrong. I spent thousands on pretty much every kind of imaging you can do, and was told time and time again that there was nothing wrong and, perhaps, it was psychosomatic and I needed therapy or, more often than not, I was given a shrug and a vague "i dunno" response.

This year, something changed. I deal with chronic pain (my spine is congenitally fused in my neck and lower spine and I have baby bone spurs all over), and in the process of trying to work on that I brought up my arm again to a dr I no longer see. He'd told me my arm was SEVERAL things over the years I had been seeing him but this time said it was a fibromyalgia knot, something I had been told by a team of doctors some time before that. I said okay cool and was sent to a physical therapy rehab center where the dr worked with myofascial release and stretches to help with injuries. This amazing man fixed my plantar fasciitis and helped get my chronic headaches under control but NOTHING we did helped my arm pain. Within a month he was worried bc we had started to notice that there was a hardness to the spot that never changed with any exercise or massage.

Worried that there was a nerve being trapped or crushed (another diagnosis I'd gotten over the years), this amazing man sent me to a neurosurgeon who immediately frowned and said he didn't think my neck pain and my arm pain were connected. He ordered an MRI of my arm and despite it not being visible on an MRI 2 years before, he found something PHYSICALLY THERE where I said I had pain. He considered doing the surgery to remove it (despite being a neurosurgeon he was fascinated with this weird horribly painful spot) but eventually sent me a surgeon for an oncology center, assuring me it was because this new surgeon was one of the best in Texas for removing soft tissue tumors, not because there was any thought of cancer.

I met with the surgeon who gave me one more diagnosis of an AVM (arteriovenous malformation), snd said they were benign and not necessary to remove as well as the possibility that if removed it would likely return. Truly, at this point after 5 years of constant nauseating horric pain when someone brushed against me or if I gently brushed against ANYRHING, a pain so bad that it had basically made me stop using my right arm as much as possible (of course I'm right handed lol), I said GET THAT FUCKER OUT OF THERE MAN and my first surgery was scheduled.

Surgery one occurred Nov 5th and was an out patient event. I went home and passed out. At some point my mom said that while I'd been in recovery the dr said the thing in my arm hadn't looked like what he expected so he had sent it to pathology. I went back to work and was hanging out until the Tuesday before Thanksgiving when I went in for a super immediate meeting with a different doctor who told me that what had been in my arm was a synovial sarcoma, aka, cancer! He, this incredibly kind man I did not know, gently discussed chemo and told me I needed to have a CT scan immediately. Based on the CT, i was either in stage one or stage four if it has spread to lungs. The day before Thanksgiving I received the news that it was stage one, it had not spread, and i was so fucking happy.

Then it was time talk about next steps. My surgeon marked out a circle on my arm to indicate how much he was gonna remove in order to guarantee clear margins..but it was not enough of a meeting for me to grasp the surgery I was about to receive.

The day of my second surgery, dec 8th, came quickly and i met with the plastic surgeon, the kindest, most patient man. He moved my arm around and explained how he was going to hijack a vein from my forearm in order to keep the blood flow health to the flap he was gonna take from the donor site: My inner thigh.

It has been 11 days and I am living in an inpatient rehab facility, working on dealing with the nerve damage/pain, the EXTREME pain of my donor site, and the lost mobility that I am working on getting back, both in my leg and my hand. The majorities of my arm is numb...except where the nerve pain burns my wrist and forearm and makes it painful to wear my arm sling (I can't fully extend my arm, nor can I lift, push, pull or use my arm in any way that would stress out my new arm flap). Also may have a brand new urinary tract infection but as I write this I'm chugging water for a urine sample to hopefully get that treated. Below are some pictures I have taken/had taken of my arm! Im not ready to look at my leg outside of the bandages (which, since having the wound vac removed today, hell yeah, will need daily dressing changes).

EDIT: I tried posting pictures of my arm last night and my post disappeared immediately so I will try to make a new post with these photos in case the whole post was erased because of them. I will tag them as post surgery photos. I do not consider them gory or excessive but hey that's just me.

I intend to post more things as I keep healing and as I gain more mobility. I was given "independence" in my room yesterday which means I can officially get up without any assistance needed (using my badass new cane to help me lift my foot in and out of bed)!!!! Which also means I can get up whenever I want without the bed alarm going off. I have a badass cane that has been the best tool in helping me get around (and has inspired my mom and others to suggest and look into getting me a cane sword which makes me laugh REAL hard). See below me using the cane to move my foot in and out of bed!

Part of why I'm posting this is because I really needed to talk about it and while later posts may not be this long or expository but I wanted to have a base post to explain other ones related to this one!!!

I will update with some newer pics tomorrow night when my mom comes by to help me take newer pics. The arm flap looks super healthy (according to the drs), and when they changed my leg dressing they said its looking really good and healthy!

I......also really wanted to post my Amazon wishlist. Due to this stupid wild bad lottery ticket, I've been struggling to pay my bills and rent but!!! I have good insurance, thankfully (since I live in the US and my hospital stay and this rehab stay would have more than bankrupted me), and im hoping my disability checks will get here in time for rent!!! I'm putting up my wishlist bc I can't afford some of the "essentials" on there and, also, because I havent been able to have any kind of comfort during any of this. I never ask for anything for holidays because usually i...dont want to burden people with spending money on me since I know how hard money is, especially right now. And if I don't have enough for rent later I might have to create a go fund me...but right now everything looks good for rent and bills just...not for anything fun.

Thank you so much for your time!!! And happy holidays you wild bastards!!!

https://www.amazon.com/hz/wishlist/ls/36PG6BAYD18U7?ref_=wl_share