In recovery
Hello! I am just now deciding to join communities and talk to people and share my story, so here we go! this'll be a long one!
It all started with migraines, bad ones, like screaming into my pillows and blankets in pain bad, for months. After a month or two of 10/10 pain migraines, saying things like "I feel like my head is going to explode", I finally got a CT scan followed by an MRI at the ER. The CT revealed what the doctor called a "mass" in my brain, the MRI revealed more details. It was a 4.5 cm tumor in the 4th ventricle of my brain that was blocking the drainage path of my CSF, causing severe hydrocephalus. So I needed "emergency surgery", I was transferred from the ER in an ambulance to the ICU, a trip of ~30 minutes. At the hospital they immediately got to work with the procedure to release the pressure so I could finally get relief. I was fully awake for this procedure, they numbed my scalp where they would be drilling, then they drilled into my head to insert a tube that would drain the built up and also new CSF. Fun fact, we have absolutely no feeling in our squishy brain bits. Definitely a strange experience to recall. I then stayed with that drain in my head for 9 days because both of the only brain surgeons were away on vacation. It felt like forever but eventually they finally got to do my surgery which lasted 12 hours, the whole day my family waited to hear about me. They were able to remove all of the tumor successfully, I was scheduled for a lumbar puncture and an MRI to see if there was any more cancer in my head or spine. They found no more tumors or cancerous cells so they planned their next steps.
p.s. The brain surgery gave me double vision, ataxia and weakness in my left limbs. I now wear an eyepatch that I switch between left and right everyday. I also cannot walk due to the ataxia and weakness, I use a wheelchair out of the house but my walker at home. I just recently received AFO's to help me gain strength in my legs and practice walking again.
I was transferred to an inpatient rehab facility after about ~3 weeks in the hospital, I stayed for 2 weeks doing PT and OT almost every morning and afternoon. In there is where I had the official meeting with my primary oncologist explaining what my tumors biopsy uncovered and the next steps. He diagnosed me with medulloblastoma a common cancer among children, but rare in my case as an young adult at 19 years old. He explained when I was done throwing up and almost fainting, that the treatment consisted of 30 cycles of proton radiation followed by 9 ~48 day cycles of chemotherapy. I don't remember exactly when but eventually they were able to finally determine what subtype of medulloblastoma I had, it was group 4 which is not so bad compared to the others it seems like, still cancer obviously but still lol. So now they knew what treatment I really needed.
I don't exactly remember when I started my treatment, but I'm pretty sure that it was pretty soon after I got home from the rehab facility. The doctors wanted me to start treatment like asap, so I started doing proton radiation on my spine and the back of my head Mon-Fri for 6 weeks. Once I had finally finished radiation I was freshly 20 and going right into chemotherapy. Chemotherapy lasted 6 28 day cycles. I only needed 1 2 week break because the chemo was making me so sick that we had to take a small break. I was very relieved to only need 6 months and not 9, shorter cycles too! Chemo kicked my ass, I lost ~30 pounds, mostly muscle mass, then to attempt to gain more weight I had a G-tube put in my nose. I threw that up the night of or night after I got home from that chemo cycle and G-tube insertion. Then we tried TPN through my port, which worked much much better than the G-tube. I stayed on TPN until about a month off chemo. I have neuropathy numbness in my toes and bottom of my feet, I had it in the tips of my fingers too but that's gone away now. It should get better, could not. Only time will tell.
I am in PT every Friday with various daily home exercises to do everyday, I am finally in mental health therapy and doing much better, hence why I wanted to write this lol. If you have any questions or any similar experiences PLEASE comment, I have so so many stories from this last year. in 3 days it'll be the 1 year anniversary of brain surgery!