Chapter 24: Halo of Shame

Halo of Shame

I had a follow-up appointment with Dr. Sherr, my neurosurgeon, who recommended CyberKnife for the entire area encompassing the back of my head.  Since the beginning of 2018, my insurance wouldn't pay for the Cyber-Knife.  So, I scheduled an appointment with Shands for their parallel treatment called gamma-knife.  The first appointment went smoothly because we were meeting with the doctors and discussing options.  When I say "doctors", I mean students and everyone.  The room was so crowded you could barely move!  My radiation oncologist was Dr. Foote and ironically he was wearing a  cast on his lower left leg and taking a knee scooter between appointments.

The first MRI was painless and occurred that afternoon.  In and out, no contrast, barium or anything like that.  The purpose of this MRI was mapping so they could tell where into my skull they needed to drill the four holes that would secure my halo.

There were four of us scheduled for the same day and we all had to arrive at 6:00 AM. Parking couldn't have been more of a nightmare.  The valet was not open yet.  We were told we could use the parking lot (the procedure was across the street from where we met with the doctors) and everywhere we turned we were met by barricaded entrances.  We were almost late as Connie had to wheel me to the elevator, down to the first level, across the street, up a ramp, in the side door, down another elevator and then a very long corridor past maintenance, catering, cleaning, dining and all sorts of mechanical functions until we saw a sign for "Oncology".

The idea was to corral all of us into a single location to which escape was not possible.  Four of us were there for halos, most with a companion. They prioritized by simplest to most complicated.  I was last (go figure) and had to sit around all day waiting on the other three.

For my halo, they first numbed the four areas of my scalp and proceeded with the drilling using a DeWalt power drill  (I'm not completely sure about the brand).  Once they had those holes drilled, they attached the halo with four plastic screws.  It was removed later in the day and boy, did I have a headache. When I went into the MRI tube, I really couldn't move.  It took several treatments on the rubberized "dead zone" to get the margins and such just to where the doctor had requested.

My oncologist indicated that there are a couple of different options in the clinical trial phase which just now became available.  If by chance the immunotherapy drug that I'm using fails in the future, there are new options becoming available every day.  I'll have an MRI in a couple of months where that decision will be made.  The new immunotherapy drug that has been released is a great way to breach the wall to the brain.  Film at 11 for more on that.

The good news is that while I was getting my head drilled, Connie went to the hospital cafe armed with a voucher for $1.70.  She said "they should have given that food away."

Next up: My Battle for Outpatient Physical Therapy

Chapter 23: My Days (Weeks) at Palm Garden

I had a few stipulations for being released for rehabilitation.  First off, the facility needed to be approved by my insurance. By now you realize how difficult that task can be!  There I was in North Florida Regional hospital; denied release and denied admittance to the rehab facility of their choice.  They said if I left "on my own" I could be responsible for the length of the hospital stay plus any surgeries or procedural costs I had incurred.  It was like being held hostage by my own insurance company.

A condition or two also were in place before Palm Garden would accept me.  First, I needed to urinate;. Second condition, I needed to have a bowel movement.  Now, I'm good but I can't "perform on command" so to speak.  They tried everything to get me to poo, but alas all attempts failed.  I begged them to get me up and out of bed, as I knew that was all it would take.  The nurses all concurred among themselves that I  needed an enema.  They never spoke to a doctor, just chose themselves to "induce" me.  My God, talk about a broken floodgate! When the doctor finally found out, he was NOT happy. He said that treatment was for extreme cases, of which I didn't fit the criteria.

Soon after, an ambulance arrived to transport me around the corner to my rehab facility.  This was a full 2 days after I was ready to be released from the hospital.  The two boy "certified nurse assistants" were ill equipped to deal with the aftermath of an enema.  I never saw those two again so I'm thinking I helped them choose a new career.

The next day, a new CNA arrived. I was clearly marked as a dual assist but the girl said "I got this."  Well, guess what?  She didn't and down on the floor I went.  My arm was twisted up under my body, my leg was all whopper jawed.  An ambulance was called to transport me back to North Florida ER where I had numerous CT scans and x-rays.  Seeing as how nothing was broken (my wrist was only sprained) I was transported back to Palm Garden where I scared away the first CNA by saying "please don't drop me; I've already been dropped today."   She ran off to the nurse's station and sent another couple of CNA's down to assist with getting me to bed.

Besides the care at the rehab center being sub par, the food was God awful.  A "grilled cheese" consisted of a piece of an un-toasted, un-grilled slice of white bread with cheese sauce like you see at a ball park drizzled over the top.  I made numerous calls to Connie saying "Bring me something to eat"!  I was in there for two and a half weeks; I would still be there if they had been able to convince my doctor that I hadn't reached the point of diminishing return with my therapy.  The therapy here was good; it just wasn't frequent enough.  I spent at least 4 idle days in a row in bed with NO therapy as a result of the fourth of July holiday.  I tried to find an in-home therapy deal but my insurance blocked all seven of those potential agencies.  My only choice now is out-patient physical therapy, for which I received a list of pre-approved individuals.  I will probably fight through that list after I see my doctor and ask his opinion.

Luckily, I was allowed to check myself out of rehab, due to the doctor's statement about the "point of diminishing returns".  They begged me to stay, even offered me a full weekend of nothing but therapy.  It was too little too late as far as I was concerned.  So Connie packed me up and off we went.  I had a hell of a time getting into the car, and am just able within the last 2 weeks to hold my head up on my own.  Of course I fell down on the first day home, which thanks to ingenuity by Connie and Mom I was able to recover.  The doctor says I will probably spend a full 6 months in the wheelchair.

Next Up: Halo of Shame