It's Been a Slice
I wrote this for Andy to publish after I die so if you're reading this I guess I'm coming at you as a ghost. I wanted to write something...
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A BRAIN TUMOR
Recently, I've been told I have a tumour on my brain stem. This website will be frequently updated with any new information I get, MRIs, CTs, and ways you can support me. If you're curious about where your Chelsea is at on this journey, this website will be your #1 resource. On the home page, you'll find a timeline about what happened and my most recent updates. In my blog, you'll find a journal about the process when I feel like updating it. I could use all the support and love I can get right now, and love talking to people. I might not answer you right away but I will be happy to hear from you 100% of the time.
Home: Welcome
A Brain Tumor
TIMELINE OF EVENTS
TIMELINE OF EVENTS
At the beginning of January, I started feeling dizzy and disoriented. If I turned my head to the left too fast, my right hand would tingle or go numb and sometimes my vision would go black for a SPLIT second. Around January 15th, I went to an Urgent Care clinic in Airdrie where they told me I had a "Benign Positional Vertigo" and had me do the "Eply Maneuver". These are fancy Doctor words for "You have rocks in your ear, you should do yoga about it."
I forget if I did the Eply Maneuver for 2 or 3 weeks, but I see my GP frequently for allergy shots. The Eply Maneuver was not helping at all, so the next time I saw my GP around the end of February I was like "Yo, I'm kind of dizzy and disoriented, especially when I turn to the left." At this point, I had also developed a new symptom: ringing in my right ear and rumbling in my left ear. Of course, I told this to my GP as well. My GP sent me to go get a hearing test from Harp Hearing, and to this amazing physiotherapist, Lifemark in Royal Oak.
I started seeing the physiotherapist at the beginning of March, and the physio he gave me to do actually helped me manage my symptoms but didn't make them go away. Between seeing my GP and my physiotherapist, I developed ANOTHER SYMPTOM (my least favourite symptom and the worst one yet can I get a drum roll please): DOUBLE VISION. During our first session, he noticed that my left eye wasn't tracking properly (this was causing the double vision.)
The hearing test was in Mid-March, and the audiologist told me my hearing was perfectly fine, save for rumbling and ringing in my ears which she said was tinnitus as a symptom of something else (can you guess where this is going?)
At the End of March, I told my GP the recent updates from these other specialists. My GP also noticed that my left eye wasn't tracking properly, and scheduled me an appointment at the Rocky View Urgent Eye Clinic the next morning. The Rocky View Urgent Eye Clinic told me I had a ""6th Nerve Palsy" which is a symptom of something else, so they sent me to an Eye Surgeon for a second? Third? Fourth? (who knows how many specialists I've seen at this point) opinion.
I saw the Eye Surgeon at the beginning of April, and he scheduled me an appointment for an MRI on May 8th (ladies and gentlemen, boys and girls and non-binary, I did not make that appointment.) Within 5 days of seeing the Eye Surgeon, I developed a CONCERNING NEW SYMPTOM: my right side was numb. Like all the time, not just when I turned to the left anymore.
Out of complete chance, my angel of a friend Vanessa called me just to chat and I told her about my new symptom. She told me to go to ER right away and got a second opinion from a neurologist friend of hers, who told me to GO TO THE ER RIGHT AWAY, so I finished my gluten-free pizza and went on Wednesday, April 7th. I have a funny anecdote about my time in the waiting room that you'll be able to find a blog post about eventually!
Anyway, that same night I had a CT done, and it was super inconclusive. They said, "I may or may not have a spot on my brain". So they sent me for an MRI. Well the MRI was a lot more conclusive - they found a tumour on my brain stem.
As of April 10th, 2021 I do not have a diagnosis. The doctors have a GUESS of what it COULD POSSIBLY BE but I need to wait for test results back from a Lumbar Puncture (Lumbar Punctures are the worst I would not recommend getting one if you can avoid it lol), a Spinal MRI, and I've yet to go for a full-body CT. Basically, they're trying to figure out what this tumour is because they can't do a biopsy because it's on my brain stem and touching people's brain stems is super duper turbo risky.
Sunday, April 11th- Big news today! They sent me home. Last night, I was looking for a quiet place to have a girl's chat and a nurse asked me if I was a patient..like on the neurology floor? I guess that was a good sign because today, they sent me home from the hospital. The rest of my care SHOULD BE done as an outpatient if nothing goes wrong! Please hope that nothing goes wrong for me <3
NOTE: IF YOU CONTINUE READING YOU MUST PROMISE ME YOU WILL NOT GOOGLE WHAT I AM ABOUT TO SAY. My case is SUPER WEIRD and rare, and on Wednesday, April 14th, it's actually being presented to the tumour board. Because this only happens to kids between the ages of 7-9, so either I've been masquerading as an adult this whole time (I mean, would you be surprised?) or I'm some kind of medical unicorn. Maybe they'll write a study about me. Woo. Anyway, what they THINK I might POSSIBLY HAVE is either a Left Pontine Glioma OR MAYBE and this one is way more maybe than the first one, it could be Inflammatory Demyelinated Lesions. Please do not Google these. Nothing you find on the internet will pertain to your Chelsea. This is a super rare case. Unicorn.
I will update this blog post with a diagnosis, the prognosis, and my treatment plan once I know what it is, which should be within a couple of weeks. In the meantime, welcome to my personal hell: not knowing, wanting information, but being terrified of what it could be.
April 16th DIAGNOSIS UPDATE
The doctors can't do a biopsy, so they told me they will never be 100% sure of what I have, but at this stage, they can say with 95% certainty it is a brain stem tumour, specifically a Left Pontine Glioma. They don't know how bad it is because they've only been monitoring it for 10 days, but I am trying to stay optimistic that it's something I've had for a long time that's super slow growing. My cerebral spinal fluids came back clean, as did my spinal MRI, showing that the cancer hasn't metastasized. A full-body CT scan came back with no other signs of cancer too.
I'm upset because they give out a handbook that says "THERE IS NO CURE" on the very first page when you get a diagnosis like this, but I think I'll be able to beat this tumour into remission and hopefully never see it again for the rest of my life. (I do plan on living forever so you had better get used to me.)
June 11th - Finished the first round of my 7-week chemo treatment and all 30 of my radiation sessions! I now get a month off to recover, and then I'll do 5 days of chemo a month for a year. My first post-treatment MRI is scheduled for August 4th, so we'll know the results of the treatment shortly after that. Here's a picture of me ringing the Bell of Hope!
November 12 - Received the news that the tumour has started rapidly growing, giving me a life expectancy of 2-3 months.
THE MOST RECENT UPDATE
I realized if I keep adding recent updates to my front page, my front page is going to end stretching to the moon and the only thing I want to go to the moon right now is my GME stock. So I'm changing the format of my Most Recent Update to be a blog post, which you'll still be able to find here, or subscribe to!
Latest Update
DIAGNOSIS
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