09/14/2025
Hi Friends!
I wanted to share an update🌸
It’s been 8 weeks since brain tumor removal surgery. My recovery is going well! 🩷
Here are some fun facts that I may not have shared yet
▫️June 11: Possible stroke, trouble speaking, seizures, I blacked out for several hours
▫️11 days in the hospital & brain biopsy surgery
▫️I was a “Jane Doe”
▫️I did not have ID & I was unconscious when arrived at the ER
▫️My Jane Doe name was picked by A.I. & the hospital used my Jane Doe name during the entire 11 days, even for biopsy surgery
▫️A.I. picked the name : Betaab Q
▫️July 18th : Brain Tumor removal surgery & 4 days in a different hospital
▫️Brain Tumor type: Oligodendrogliomas which is rare, approx 5% of brain tumors are this type
▫️Mine is Grade 2, slow growing, not cancerous . I’ve likely had it for several years
▫️As the tumor grew, it scrunched part of my brain. Now there is an empty spot in my skull where the tumor was
▫️My tumor is/was in the speech area of my brain which explains why I had trouble talking before my seizures started
▫️My surgeon removed most of the tumor but was not able to fully remove the tumor. This is typical with brain tumors. Full removal could have caused brain damage & loss of speech
▫️The “Tumor Board” were split on my next treatment : How to reduce as much of the remaining tumor safely? After meeting with my Oncologist, my Surgeon & Radiation Oncologist, we decided that I will be starting a medication : Vorasidenib
▫️We will be doing MRIs once every 3 months to monitor the tumor. Unless there is growth, I will not need Radiation & Chemotherapy
I’m still recovering but each day getting better
Thank you to everyone for your support! I can never thank you all enough 🩷
I’ll post another update in a few weeks once we see how the medication helps me!
Big hugs 🥰
Heidi
