In April of 2015, I was at work as a special education teacher when one of my students tipped his desk onto my foot. It fell on my toes, so they sent me to the doctor. I was checking in with the nurse there and she was asking about my current meds. I could see her, I could hear her, why couldn’t I answer? She said Michelle, Michelle at least twice…the next thing I remember I was waking up in an ambulance with a walking cast on my foot. I said to the EMT, “I’m going to the hospital for a broken foot?” And he said ,” you had a grand mal seizure.” WHOA. Ok, not my first. I have no parathyroid. I have no thyroid. My levels get off and things get weird. Get that settled. I’ll be fine. Right? I needed someone to tell me right. I have Cowden syndrome so I’m not a stranger to testing constantly. When I got the the hospital they did blood work. Calcium and parathyroid was a little off, up the seizure meds, go home and sleep.
I saw my oncologist the next week and she said “you had a seizure after being seizure free for 17 years and no one wondered why?” (At this point she’s new to me) and she wanted to do an MRI. I went for the MRI on a Thursday. Friday night I’m leaving to go to my school’s prom and my phone rings. It’s her. The MRI shows 4 meningiomas, one sitting on my brain stem-which the neurosurgeon later found wrapping around. I remember dropping the phone and saying “Happy Birthday to Me” as my birthday was 3 days later, and then leaving for the prom.
I met the neurosurgeon 3 weeks later. The brain stem meningioma had to come out now! He reviewed everything that could happen if it didn’t, everything that could happen if I waited, and everything that could happen when it does. I don’t think I breathed the whole time. I was terrified. What about my family? My dogs? My students? I’m not ready for this. And in the mean time I had 3 more seizures. My body had another plan.
I had my 15+ hour brain stem tumor craniotomy on July 21, 2015. I was in the hospital for 4 days and the only real side effect I had was 6th nerve palsy, lazy right eye. I wound up needing follow up radiation but was back to work like nothing ever happened on December 1, 2015. Life went on with watch and wait of the other 3 tumors.
The other 3 decided to misbehave this year, and I began to lose control of my right side. They were growing and starting to come together and push my brain. Surgery number 2 came on March 16, 2017 and lasted 10 hours. My surgeon found a fourth tumor while looking at the MRI that morning and he removed all four that day. The ones on my frontal lobe area had entered the bone so I now have five titanium plates. Recovery was interesting as they had to give me a lot of fake dura for all they cut out. I heard a lot of fluid. I got puffy spots in more forehead. My balance was off a lot, but I was home after two days!
Last week I had my post-op MRI and all is going as it should. The surgeon did say he saw a sixth tumor but it is 4mm, up from 2mm-still the size of a pea. He says it is so deep only radiation would do (only radiation!)
Walk day TOMORROW!! I am so excited. I am six weeks post surgery number two for this terrible nightmare that afflicts far too many people. I have beaten five brain tumors in eighteen months and I will be proud to walk tomorrow. I walk for those who can’t because of these monsters. I won’t stop advocating. I’ve been blessed with an amazing surgeon and care team, a recovery plan, a strong support of friends and family, and an unbeatable faith in God. I plan to speak and work against this awful condition for the rest of my life. Thank you all who supported however you can!! See you loves in the morning!!
