My tumor journey
CE: weight stigma, suicide, sex, cursing
TLDR- medical system failed me. Misdiagnosed with depression. Came close to death before finding real diagnosis by demanding ER CT scan. Large brain tumor found behind right eye.
They didn't do a brain scan prior to treatment even though I asked for one. How else do you track progress? Doctor told me "it's to expensive ". The tms treatment had no effect on my "depression " because the diagnosis was wrong. They did tms left side and I started having migraines. They switched to right side stimulation and that is where my tumor was located. The migraines made me vomit. The summer heat increased the swelling. I was going around with a ziploc bag to vomit in while I continued to try and live a normal life. I was prescribed migraine medication and anti nausea pills but they has no effect. I went to pcp to try and get imaging but the closest center had a 2 week wait. I was starting to have right side stroke symptoms on my face.
I asked to go to ER. Called my 21 year old step daughter to drive me. Immediately got a CT there ams they found a large tumor behind my right eye. I was so relieved to get the real diagnosis after 2 years of chronic illness rapidly accelerating despite trying every treatment available for depression. Dozens of doctors, blood tests, medications, genetic test, therapy, yoga, leaving work on fmla, dieting, working out, trying to lose weight but only gaining despite my best efforts, I tried everything to help my body.
For 2 years maybe longer the tumor was slowly getting bigger and pushing my right hemisphere brain back. My brain started to shut down all non essential functions. I was turning into a zombie. I thought I had aphantasia because I could no longer visualize pictures. Brain fog moved in. Hobbies didn't interest me. I felt disconnected from loved ones. I was scared. I didn't understand what was happening to me.
I lost my creativity, my connection to my faith and everyone I loved. I was suicidal. Life didn't seem worth living and felt like it would never improve. I was scared of going to hell or failing to complete an attempt and ending up disabled. So I planned and ideated instead. I sat in my running car in the garage and cried while trying to suffocate. Didn't work. I made a noose and researched how to do it properly. Meanwhile continuing with my depression treatments. I'm so glad I never went through with it.
I went on vacation with my mom to see my sister in Hawai'i and had some fun. But I was tired. I would sleep all night and wake up with no energy. I was told to exercise more and eat right. Fat shamed by my family and doctors. Am I lazy? Maybe. No energy to do laundry or dishes or cleaning. I am a piece of sh\*t. Not good enough. A worthless waste of space.
So after ER I was ambulanced to the closet hospital with a neurosurgeon. Stabilized in the ICU until my turn for surgery. Surgeon said a few more days and I would have gone blind or died suddenly. June 9th was my turn and I had faith God put me in good hands. The surgery was 9 hours total. Went better than expected. My right eye was salvaged. Tumor sent off for biopsy. When I woke up I felt amazing. Everything came rushing back. I was me again and better than ever.
The recovery process will be long. This was brain surgery not wisdom tooth removal. My brain is confused as to what happened. My body was weak from being bed bound. I didn't feel the sun for 3 weeks. Light hurt my right eye so bad. Too much sound or light or activity overloaded my brain quickly. Executive functioning and impulse control were dysfunctional. I couldn't regulate my emotions. I felt disconnected from my own body. I was so scared and kept asking nurses and doctors how was I doing and what was needed to help me recover. I couldn't see out of my swollen right eye. I couldn't think straight. My family was unable to visit me in the hospital, so I was alone most of the time. I started calling friends and family to reconnect using video calls so I could see their face and their lips while talking and to see their eyes connect with mine helped a lot
I was a fall and seizure risk so not allowed out of bed alone. The hospital was short staffed so I couldn't reliably get help. I didn't want pain meds because of a bad trip from oxy. So i lived off ice packs for the pain. I begged nurses to let me walk the hallways but they were too busy to babysit me. I was able to walk with a walker but only under supervision.
I had no one to hug me to advocate for me to explain what's going on. My friends helped but their own lives are so busy. I felt so helpless and scared and lonely.
I was told by a hospital neurosurgery lady that once I got to outpatient treatment I would make rexovery progress. She assumed I would be discharged after a few days.
My left arm swelled up for 3 days then the pressure popped painfully. Sonogram showed a blood clot. Specialist came in and helped me.
I developed a strange rash a few days after transfer to neurological recovery unit. all over my chest, neck and waist. Not itchy or painful thankfully. No treatment was provided.
I couldn't poop. No muscle action, no urge, no gas. My abdomen bloated to painful levels. I begged everyone to help me. I would do anything. They gave me stool softeners, 5 different enemas, all the prune juice, this lemon fizzy thing, miralax, ducolax, but nothing worked. For almost 3 weeks I couldn't poop. I started to think my gut brain axis got severed. I thought I was gonna die from not pooping. They did an abdominal xray but nothing was compacted. I was miserable. Suppositories helped me feel some cramping but still couldn't move stool.
Finally my aunt called my mom and said for me to get the colonoscopy prep liquid. So I did and and chugged the first dose. The hospital decided to release me to rehab an hour later. I pooped all the way there and then got my first shower since being hospitalized on the 5th of June. It was now June 17th, 2026.
Finally a place to heal. Rehab was transformative.
I made so many friends there. Talking to people felt so good after being alone for so long. I could go for walks, outside even! I felt the breeze, saw birds and flowers. Touched a tree. Felt the rain on my skin. Snuggled with therapy dogs. I felt alive again. I can't wait to go visit and give back as much as I can. I want to help everyone have a good life and make a difference in the world.
When I had moments of mental clarity, I would write down things to tell my doctors and nurses because my working memory was impaired. I exported my thoughts to paper.
I got better at listening to my body. I could understand what it needed and I would give it the nourishment necessary to get better. I told my doctor about my extreme pain levels and they overhauled my medication so that I could function better.
When I could somewhat see out of both eyes, I started to organize my brain by Journaling and writing notes. My body was weak but my mind was steadily getting stronger. I was motivated and positive and happy to be alive.
I discharged home on June 30th. Can barely walk but my mind is getting organized and I developed systems and routines to help me.
I'm on the path to getting my life back and I'm going to make sure it's a kick ass one because it's the one life I have.
And I lived happily ever after. The End.