Brain Tumor

Tumor Timeline

This is mostly to anchor myself in time. I feel like so much of this month is a total blur. Thought others might be curious too though…

2/2/17 2pm: MRIs at Carle Clinic in Danville. Tech is super nice. I say to Dan as we leave, “If he wasn’t so nice before the MRI, I’d be worried he saw something.” Tech tells me I’ll probably hear results tomorrow morning.

2/2/17 6 pm: Look at my phone. 8 missed calls from my doc’s office.

2/2/17 6:10 pm: After hours service tells me I have an appt next day at 1:30. I’m thinking “Why so dramatic?” I’m prepared for an MS diagnosis. They just don’t know I’m ready.

2/3/17: Doctor breaks the news I have a brain tumor & recommends I go to Barnes Jewish, where she’s been in touch with a doctor specializing in brain stem tumors.

2/3/17 pm: Arrive at Barnes Jewish ER with Dan & parents, repeat all MRIs done in Danville, get CT scan, EKG, chest X-rays, every possible autoimmune blood workup, etc.

2/4/17: Fully admitted to hospital.

2/5/17: Start steroids & other meds, meet with all the doctors. Brush teeth & dress myself like a boss thanks to my performance enhancing drugs.

2/6/17: Get starved for 16 hours, have PET scan.

2/7/17: Get nervous about spinal tap; have it called off by doctors because of tumor. Even guided by x-ray, they are not comfortable doing it.

2/8/17: Surprise! Spinal tap back on, and they’re going to do it by *feel*, bedside, without x-ray. It will require someone to ask for a longer, bigger needle. The headache from the change in CSF pressure will be the worst i’ve ever experienced, until…

2/9/17: Brain biopsy & confirmation of grade 2 astrocytoma.

2/10/17: ICU, machine peeing for me, PT where I walk about 60 feet. Worst pain of my entire life.

2/11/17: Pain, dehydration, no sleep, crying, poked & prodded every 30 minutes, lots of wondering if I should have refused the biopsy, despair.

2/13/17: Released from hospital with so many medicines, but pain mostly controlled and no complications or unexpected issues resulting from surgery. I can pee on my own and walk the hospital halls with my trusty walker.

2/14/17: Recover from surgery at Mom & Dad’s.

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