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Good morning! It's May 1, and in honor of Brain Tumor Awareness Month, I'm going to do a thread about my brain tumor, Astro. 1/

#BrainTumorAwarenessMonth #BTAM2019
Astro is a WHO Grade 2 Diffuse Astrocytoma of the medulla and cervical spinal cord. He reaches
from about my pontomedullary junction to the mid portion of my C2 vertebra. 2/
He's oddly shaped, but measures in at just under 3 x 3 cm on MRI. (That's after he lost a little bulk in October 2017 following chemo and radiation therapies. He hasn't really changed much since then.) 3/
I believe I experienced my first symptom of Astro (a migraine) sometime around 2004 or 2005. But it wasn't obvious to me that something was really, really wrong until about 2014. 4/
Unfortunately, my doctor thought my generalized pain, muscle weakness, and fatigue was no big deal. So he didn't even bother to look for Astro. Instead, he diagnosed me with #fibromyalgia, tossed me some antidepressants, and told me, to excercise more. 5/
Astro, unsurprisingly, didn't really respond to the Cymbalta. So he used the next 2.5 years of medical incompetence to hide out and get bigger. He wasn't really a fast grower, but he did more than enough damange. 6/
My health continued its slow, steady decline while doctors berated me for being fat and lazy. Until one day while walking around Walgreen's my leg just stopped working. By that time, I had nystagmus so bad I couldn't balance on my own. I was falling down all. the. time. 7/
On February 2, 2017 I had my first MRI. On February 3, 2017, my primary doctor broke the news to me.

Brain Cancer. 8/
My husband and I drove to Barnes-Jewish Hospital Emergency Department that same day, where I was admitted and spent about 9 days in the hospital. During my stay, I had blood tests, CTs, MRIs, a spinal tap, a PET scan, and BRAIN SURGERY. 9/
The brain surgery wasn't to remove the tumor -- doctors knew that was impossible. It was to do some genetic testing. They scraped a few tumor cells from my head and determined that Astro was an IDH1-mutated lump of cancer. 10/
Knowing Astro's deets gave doctors better information for picking a treatment course. I also let them keep the cells on ice. For science. 11/
Chemo & radiation were BRUTAL. So was the dexamethasone the put me on to keep me strong. (Dexamethasone is a really power drug, a steroid my doctor called the "mother of all steroids.") 12/
Here's a pic of me (in the blue shirt) with my family on my last day of raidation. Compare Treatment Me to Current Me (see my Twitter avi) and you get a sense of the havoc wreaked. 13/
Anyway, unless someone finds out a way to kill Astro without killing me too, I'll spend the rest of my days on this earth with him hanging out inside my head. I've mostly made my peace with that. Mostly. 14/
I'm disabled, but managing the best I can. Some days are hard and some days are unbearable, but I'm still glad to be here. I encourage you this month to "Go Gray in May" with me and learn the signs and symptoms of brain tumors. Maybe donate to a research charity if you can. 15/
You can read more about my specific story on my blog: emilysuess.com. And in the meantime, if you have any questions, feel free to hit me up. 16/
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