March 17, 2017

Day 77

Today I was officially given the final blessing by my Neurosurgeon to get the hell outta dodge….or Pittsburgh. Whoooo-friggin-rayyyy! The follow up visit was very informative, and I was glad to finally hear about the biopsy results from my clival chordoma. It turns out that Dr. Gardner thinks that I am potentially a 1%’er. What that means is that after looking at all of the tumor cells he could only find 1% malignant, active, and slow-growing. The other tumor cells were just helping to invade space and compress on my brain. The problem with my tumor was that it grew these finger-like projections that wrapped themselves around arteries, cranial nerves, and ligaments. Dr. Gardner “thinks” that he was able to surgically remove all of the active cells. He cannot be 100% sure since the tumor had spread out in multiple directions instead of just being a big blob on my spine.

We had a good discussion about the need for Proton Beam Radiation. He recommended that I consider going through with the treatments, but personally I do NOT want to expose myself to radiation if it is absolutely not necessary. I have some time to think about it and make a decision before my follow-up in a month. He also ordered a full spinal MRI and a skull based MRI to be done the day before my next visit. Has anyone ever spent 4 hours in a noisy, white, narrow tube with a cage on their face? Well, I am not too sure how that one is going to go over. I guess now would be the best time to start working my way up to a good and long, 4 hour meditation session.

Earlier this week I also saw my ENT Specialist, Dr. Snyderman. I sat in this exam chair while Laurie, my sister, sat in another chair where my view of her was blocked by a large TV screen facing away from me. If I wanted to have a conversation with her I had to lean forward a little bit, so I could see her face when we talked.

Dr. Snyderman came in the room to do his exam in hopes that I would be given his blessing to fly home. He put on his gloves and busted out that fancy, straw-sized, light up camera that I love so much; especially when it is shoved up into my brains. As it turns out, in his exam room up on that big ol’ television screen was the viewing of, “What on earth can we find inside Sandee’s nostrils today?” Laurie was obviously very interested in the show, so she leaned forward to look at the screen, and this put her face right in my view. I’ll be damned if somehow she was never taught anything about a poker face. She does not quite understand how to make her face stand still while her mind screams out “Holy Crap! What the fuck am I looking at?” I’m not sure why I didn’t look away from her, but she made this face that was similar to either eating sour lemons or something very, very non-delicious. She looked disturbed. I felt disturbed. It was definitely a little concerning, but in the end he cleaned out my pipes and said “It’s looking good”.

Before we left, I needed to mention to Dr. Snyderman that I was a little concerned about my thigh that they had filleted open to take fascia that was necessary to graft on my spine.My thigh was pretty swollen and looked a lot like a super muscular Popeye leg. I could press around the incision and feel a huge pocket of fluid underneath the skin. When I was initially in the hospital, they had a drain placed in my right thigh. The drain wasn in my leg as long as possible and removed before I was discharged home. Unfortunately, over the last few weeks it managed to fill up with fluid….a lot of fluid. Dr. Snyderman wanted to drain it, so he gave me an option to inject numbing medication into my leg first, or just stick a needle in me and drain off the fluid. Regardless, I was going to get poked, so “just drain it”.

As I leaned into a position to make it easy for him to do the deed, I again made facial contact with my sister (bad idea). The needle went in, and her non-poker face made its way into a jaw-dropping, wide-eye expression. Holy hell, what else in the room could I look at and get my mind off of what was currently taking place? He had to detach the needle from his 20 ml syringe several times because there was a significant amount of fluid that had built up. He wound up draining out 160ml of fluid. In the meantime, I kept scanning the room trying to find something visual to take my mind off of the procedure aside from my sister. Somehow I kept looking over at Laurie’s facial expression. Needless to say, by the time my leg shrank back to a somewhat normal size I became sweaty, light-headed, pasty, and needed to fan myself with some random magazine Laurie found somewhere in the room. The experience sucked…literally and physically.

Since that fun experience, my leg has managed to accumulate another big pocket of fluid. No more non-poker facial expressions puleeze! I have decided that I am waiting to get back to California before I have my Popeye leg drained again. I am happy to say that I will be returning home next week. I cannot wait to see my puppies and kitties and fish and tarantulas.