Holly Schumacher

First post: Oct 28, 2019 Latest post: Oct 2, 2020
I found out I had a brain tumor on October 2nd, and I had surgery on November 6th where the doctors were able to remove 50% of the tumor, the remaining 50 % was wrapped around the midline artery and couldn't be touch. The tumor is a malignant grade 2 astrocytoma, IDH1 mutant. I will be receiving at 6 week course of radiation followed by 6-12 months of chemotherapy pills.

 

In March, I began waking up at night with an unpleasant taste in my mouth but didn't think much of it. It started as just once a night but over a month and a half progressed to 3-5 times a night. Although annoying, it was not necessarily alarming. Around Easter the taste began appearing during the daytime. Along with the unpleasant taste I also experienced an aura 5-10 seconds before the taste, prompting me to know it was coming and my vision would go widescreen (the opposite of your vision narrowing). During these episodes I would normally excuse myself from other people but a few times when it happened around others they said things like, "your eyes went all weird/glassy" and "your mouth was drooping". After the second day of this happening multiple times while I was awake I sought  care at a walk in convenient care clinic. They had no clue what was going on and wanted me to see my family physician for a consultation. The family physician thought it sounded like acid reflux as it was mainly at night, while lying down. After a month and a half of treatment for reflux, symptoms were unchanged so an upper GI endoscopy was ordered. The scope was normal and it was determined whatever was going on and causing the unpleasant taste wasn't coming up. So the next step was to see if it was coming down and I was referred to an ENT/allergist. After being put on an oral allergy medication and a nose spray for a month and a half, things were still unchanged, the episodes were still happening both at night and during the day. There was no rhyme or reason to them, sometimes I would go 2 weeks without one during the day but always had them at night, and other times they would happen 4-5 times during the day and at night too. The ENT determined that nothing was coming down to cause the symptoms and referred me to a neurologist. Because of a referral to a specialist, it took a little over a month to get an appointment scheduled. The episodes continued to happen at varied frequencies during the day and night, oftentimes at work. The Friday before I was to see the neurologist, I experienced 3 episodes at work before the football game. At the start of the game I talked with team doctor Denise Pine Mattas about what was going on in case it happened during the game and I walked away without saying anything or indicating something was wrong. After gathering more details, Dr. Pine Mattas decided she wanted to order some tests before I saw the neurologist so all the results would be ready when I had the appointment and hopefully some answers. The next week I had an EKG, echocardiogram, and holter monitor that all came back normal. On October 2nd, the day before my appointment with the neurologist, I had a brain MRI scheduled. I went in for the MRI, had the imaging done as normal, but when the tech pulled me out of the machine she said "I'm just the tech, I don't read these, but I'm going to see if the doctor wants images with contrast". A few minutes later she came back in and put the contrast dye in my arm and did another set of images. After that set I went to work like any normal day. Within 25 minutes of arriving at football practice, Dr. Pine Mattas called to ask me to come into the office as she had the MRI results back. I left practice and went into the office to discover I had a 5cm x 5cm x 6 cm tumor in my right frontal and temporal lobe. Dr. Pine Mattas decided the best course of action was to send me to Indianapolis immediately to see a neurosurgeon. Since she would not let me drive I was taken to Indianapolis by a friend and my sister came from St. Louis to be with me. After spending the night in the hospital and seeing the neurosurgeon, I learned that these episodes that had been happening were actually seizures and were associated with the tumor. Because I was unable to drive, work, or live alone (per the doctors) the decision was made to temporarily move to the St. Louis area to live with my sister and continue treatment at Barnes Jewish Hospital.  My mom came from Florida and is also staying with my sister and family.


 

 

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