I know this post is long, but the time it took to find the tumor was even longer. Long story short: ALWAYS trust your gut
““Life is so fast and it can change in an instant.””
I fell a lot, would lose my balance and fall down stairs or walk into walls, but I was always clumsy so I thought it was normal. I would get awful headaches, but my mom has always suffered from migraines and so have I, so I thought that was inherently normal. I was so exhausted I’d sleep 12 hours and still feel like I had just pulled an all-nighter, but I was a young mother to a toddler and recently engaged, working late nights, taking 18 credits in college, trying to buy a house and plan a wedding, “no shit I’m tired”, so I figured that too was normal. Then, half my face went paralyzed, that was not normal. Next, I could hardly see and had an inability to move my eyes left or right, that was seriously not fucking normal. That’s when I knew something was wrong, like really Lady-Gaga-wearing-a-meat-outfit-wrong.
I can remember where I was, what I was wearing, and what I was doing when I realized shit had just hit the fan in the health department for me. The worst was, nobody took the symptoms too seriously or believed me (In friend’s and family’s defense, I’ve always thought of myself as an actress, whereas most would argue I’m not an actress just a dramatic hyperchondriac). I had been misdiagnosed not 1, not 2, not even 3, but at least five or six times. Now, I do not blame the doctors for misdiagnosing me or missing my tumor, I blame myself for accepting that nothing was seriously wrong when I knew deep down in my gut, things were more than wrong.
The facial paralysis and extreme exhaustion was diagnosed as just symptoms of my previous health struggle with Lyme disease that I’d been fighting over 10 years. Fair enough.
I had excruciating neck and spine pain, that was diagnosed once as a “slipped disk” (with no visual proof), and once as just stress and a bad back. I had always had a bad back... I’m 5’9, my posture sucks. I knew what I was experiencing was so much more than back pain and stress. I had a child and gave birth, my pain tolerance is way higher than going to the ER for back pain - no offense to the people who do that (babies). I was screaming crying in pain in the shower under hot water unable to move my head. I remember saying repeatedly if someone would just cut open the back of my neck, I could’ve pulled out what felt like a “bouncy ball” from those 25 cent machines stuck in between my spine and neck. Flash forward over a year later: turns out this was not a slipped disk or back pain, it was a mass moving from my spine to my brain.
My clumsiness symptoms were diagnosed as a B-12 deficiency which was not a “misdiagnosis” as I really was B-12 deficient, but after weeks of B-12 injections in my ass and no improvement, I knew that B-12 was not the culprit of my symptoms.
The most inaccurate diagnosis was on my vision and headaches, but again my fault as I went to a glasses place in the mall instead of a certified optometrist or ophthalmologist (I would later come to realize the true difference between the two). In my defense, I had no insurance at the time and a mall eye exam is so much cheaper. If I had realized the importance, difference, and seriousness of a certified optometrist or ophthalmologist and the situation, I would have spent the money. Yet again, being cheap due to the struggles of a capitalist society had bitten me in the ass. My bad. I left the mall with two pairs of the lowest-grade reading glasses known to man, and after this whole ordeal turns out I have 20/20 and never even needed the reading glasses, but I was desperate and wore them faithfully praying for improvements anyway. I also wore them faithfully because I thought I looked cool.
At my old job, the ceiling had fallen on my head and I got knocked out and a concussion. I figured the only thing that could explain all these symptoms was either a brain tumor or untreated post-concussive syndrome. I went with the second option, as it was less life-threatening and scary. I was diagnosed with this from a neurologist, who had finally prescribed me three MRIs. I still can’t believe nobody ever recommended or performed an MRI after all this time, even at the initial point of my concussion when I was instructed to seek immediate medical attention for the ever-growing-golf-ball coming out of my head where the ceiling hit me. I could write an entire separate entry on MRIs - not only are they a bitch to get approved and covered by insurance, but they’re boring, scary, expensive, and will make the least claustrophobic person experience claustrophobia.
Over a month of arguing with insurances over MRI approval I finally got the MRIs. I immediately demanded the results/MRI findings as I couldn’t take the uncertainty anymore - was something wrong with my brain or was I just crazy? Rhetorical question, it was both. I am not sure why I thought I would understand a single thing the results of the MRIs showed (both the images and the text). Not only had I never seen brain imaging before so I didn’t even know what the hell I was looking for, but I had never seen so much medical terminology as they used on the textual results. I remember trying to read it but it was as if it was written in the “Webdings font" on Microsoft Word - I had no idea what the fuck it said. So naturally, I turned to Google. Even Google didn’t give me the results - which was shocking and made me even more scared because Google knows everything. So, here I am, results in hand, still clueless and scared. I had a little gathering that night with my fiancé, dad, stepmom, older sister, and her boyfriend where I pulled out the MRI images as if it was some party prop- and we drank while looking through them. Deep down I was hoping they’d see something or give me some insight. Did I mention none of them are doctors? I don’t know why I thought they would know anything, but I was desperate. Basically, I invited people over to get drunk and have a brain image viewing party. Yeah… that was weird for all involved. Yet again, here I am, uncertain, scared, and desperate.
I should mention that first I tried calling the neurologist so she could walk me though the results but she said she’d have to meet me and tell me in person and that nobody should ever have given me the results without doctors permission. I’m not sure they felt they had a choice in giving me the results as I basically demanded them the way Veruca Salt demands the golden goose in Willy Wonka and The Chocolate Factory- “I want my results and I want it now”. Next stop, I call one of my closest friends whose boyfriend is a doctor and read the results as best I can to him. He confirms nobody should ever have given me these results, tells me the results find something of decent size in my brain, and calms me down. I was so upset not knowing anything that knowing something, good or bad, calmed me down. It was so much better than uncertainty.
A little over a week later, I meet the neurologist who confirms that something was in my brain. She gave me minimal answers, referred me to a neurosurgeon (it was at this point I realized I’m fucked) and told me to ask him all my questions. The next week, I go to the Bronx to meet the neurosurgeon. Him and the nurse practitioner reviewed my MRIs, spoke to me and viewed my symptoms, then said they would present it to the tumor board the following week for a collective opinion on the best way to remove. My mother and I left and went to get a glass of wine (we were stressed, ok?). Not even an hour after leaving the neurosurgeon, they were calling us. Apparently, I was so symptomatic they called an emergency meeting with the tumor board where everyone agreed I needed intensive brain surgery as soon as possible. They said I would be admitted first thing Monday, and the surgery would be first thing Tuesday. It was Thursday. That meant I literally had one weekend to process the fact they’d found a tumor in my brain, process the fact my entire life just changed in a 3 minute phone call, process the severity and urgency, and process that in just three days I’d have my head cut open and people in my brain. Safe to say that was not enough time to process the magnitude of the situation,let alone prepare myself and do my research. I figured the more I knew, the more I would be scared so I just accepted that I didn’t know shit, didn’t have a choice if I wanted to live, and accepted my life was about to change. Oh boy did it change, truthfully I am still trying to process it all. I’m not sure it will ever make sense.