My attempt at explaining why my surgery was so intensive and my recovery has been so unexpected.
“When something bad happens, you can either let it define you, let it destroy you, or let it strengthen you.”
There are 10,000 reasons why I don’t want to be compared to anyone (unless it’s a comedian or supermodel), and I am sure they do not want to be compared to me either. Every tumor is different, every brain is different, every person is different. I’m not saying one type of brain tumor is better than the other, but I’m definitely saying there was no way in hell it was ever even a possibility I would be walking out of that hospital (unbeknownst to me). It’s extremely rare to live with the type of tumor I had, let alone have a successful GTR (gross total resection). Add walk, talk, eat or even breathe without a machine afterwards and forget about it. I am so envious of those who walk out of the hospital, those who can smile on their way home like “damn that was crazy”. I’m certain there are also people envious of me “I can’t believe she isn’t in a wheelchair anymore”, “she’s so lucky to be alive”. I’m not disagreeing, I am lucky, in an incredibly unlucky situation. I had a benign tumor in a malignant location.
I am constantly trying to explain what actually happened but it’s harder to explain than why drive-up ATMS have braille but money does not (seriously.. why?). I figure the more I help other’s to understand, the more I will understand. I’m not sure if it’s working but whatever.
Buckle up kids, let’s get started.
Last May, the ceiling falls on my head at my job and I get a concussion. First of all, wtf kinda bootleg ass ceiling just falls on someones head? I now have PTSD under drop ceilings. Shortly following, shit starts going wrong. Like can’t move my eyes left or right, only one of my eyes blinks, my smile gets weak, balance, vision and hearing slowly fading out. At this point I’m thinking great this piece of shit job and their piece of shit ceiling are ruining my life. Also, I’m not gonna lie, I legitimately thought maybe I have copper intoxication. I’m one of those you-seriously-need-to-get-the-fuck-off-the-internet people.
I had just turned 26 that November and gotten dropped from my father’s insurance. I’ve always had impeccable timing. So with no insurance, I am going to neurologists on Worker’s Comp, with the assumption that the concussion was sabotaging my brain, only to find out that post concussive syndrome was actually the least of my concerns. If you want to read about the entire diagnosis process, read my blog “The Journey to Diagnosis”.
Fast forward from the ceiling to the neurosurgeon: He sees my MRIs and is basically like "if you’re lucky we can remove this mass with A chemo/radiation, B endoscopy (surgery through the nose), or C worst case scenario, a craniotomy”. Spoiler alert: I was on a pretty steady path of doom. So long story short the neurosurgeon confirms there is something very large in the center of my brain, goes over some removal options with me, says "let’s see what the tumor board says next week”, and sends me on my way. Apparently, him and I have two completely different ideas of what 'next week' means.
Neurosurgeon calls me less than 30mins after leaving his office like “Hey girl, whats up? Long time no talk. Remember that whole 'we’ll see what they say next week' thing? Well you are way more symptomatic than we expected and we called emergency tumor board meeting. The mass is rapidly growing in a crucial location, you have a few weeks until you’re blind or deaf and a few months till your dead. See ya at the hospital Monday where we will cut your head open and change your life”. Obviously that wasn’t the exact conversation, but you get the gist.
That was Thursday. That left me Friday and the weekend to “prepare” to sign my life away, uninsured. My aunt (look up: Girl Boss) used some of the biggest connections she had made in a 20+ year career of fighting injustice, pulled every string she could, and gets me a meeting with social services. If there was ever a woman you did not want to tell no, it is her. Long story short I was able to get emergency medicaid a DAY before my surgery. *stores in “count your blessings” category*
This is where I become 1 in a million (not that I wasn’t already).
My surgeon went into my brain to remove the mass that was pressing on my brainstem, ocular nerves, trochlear nerves, facial nerves, threatening my life, etc. I was even developing spinal stenosis.. no biggie.
The mass turns out to be a cyst full of live blood, growing rapidly as it feeds on the blood in my brain. Why don’t you fuck off and go feed on someone your own size? This cyst was the size of a lime, and it was putting so much pressure on my brain that I was literally going blind at an alarming pace. I’d even completely lose my vision sometimes, it was scary but wouldn’t last long so I’d be like wow that was weird, and move on. Ain’t nobody got time for that.
Anyways, they remove the cyst (at this point, the mass had already completely compressed my nerves, and now my nerves are as lost as Kylie Jenner was before she got her lips). When they remove the cyst, the surgeon gets clear vision of a tumor in my brain stem. The cyst was on my brain stem, the tumor was in my brain stem.
A few years ago it was illegal to operate on anything other than what was originally, consensually, being operated on. Luckily for me, this law was overturned and if the surgeon feels they can confidently remove something life-threatening, they have the right to do so. My surgeon was obviously confident, and he should be, he performed the first successful siamese twin separation in NY. I haven’t said his name because I am not sure if I’m allowed (not that I have ever been a rule follower, but he saved my life so he is on my “top 5 list of people I don’t wanna piss off” list). He performs what I call a surgical twofer: two resection surgeries at once.
Part of my OP Notes.
Let me add - the type of tumor he saw is most common in children. Developing before 8 years old, killing most patients by 12 years old. Normally, if they even saw this tumor on an MRI (it was size of finger nail), they most likely wouldn’t even operate because the location is too risky (all brain surgeries are life-threatening.. but the brain stem especially). Normally when a tumor is in such crucial location, such as the brain stem, it’s a 'wait and see' approach. My surgeon was already in there, had the legal right and medical knowledge, so he successfully preformed a GTR. The tumor was then sent to pathology where they said “I have no idea how this is possible, but whatever the fuck this is, it’s benign”. No idea how I got it, how long it had been there, how it did not kill me, or whether or not it will grow back (probably scariest part of that tumor.. I can’t even imagine going through all of this again).
Open another browser and go to Google, type in "most important part of the brain”. The answer is where my tumor decided to reside. Kimmy Gibbler ass tumor, go home.
Everyone tells me I am so strong for going through this, but what other option did I have? The only choice I’ve had in all of this was life or death, and I chose life. All choices come with consequences.
If you don’t like my explanation:
My surgeon’s explanation: “As soon as I extracted the cyst and tumor, her entire body was reset.” Um, what?
My mom’s explanation to my sister: “You know when you turn a car on and the dials go all the way to the right, then back down? That is what happened to Loren. He took her cyst and tumor out, and everything shot up, then went back to normal, like a car starting up”.
If you still don’t get it…. join the club.
In conclusion, I’m a survivor by Destiny’s Child is MY JAM.
Not to change the subject, but Ellen still hasn't responded to me. WTF is her deal? Maybe she channeled her inner-Dory too hard and keeps forgetting about me. Not for nothin’ but I bet Oprah would put a little more respect on my name…
If I said I made this, would you judge me?