Life Interrupted

The following post is from April 2016. One of the first blogs that I had done.

It was 9 years ago when I was diagnosed with a Craniopharyngioma, which is a type of brain tumor derived from the pituitary gland. Craniopharyngiomas occur in the sellar region (the part that holds the pituitary gland) of the brain, near the pituitary gland. They often involve the third ventricle of the brain, optic nerve, and pituitary gland. At the time, I was healthy and worked out at the local gym regularly. I had been at my current job at the Sheriff’s Office for a year and had just purchased a brand new 2007 Toyota truck. Life was good. Then all of a sudden, from one day to the next, I started feeling ill and was experiencing low energy, horrible migraine headaches (that I had never had before), weakness, etc. I went to my Primary Physician, and he ran some tests and didn’t find anything. He then referred me to a Neurologist, and after a series of tests, they discovered that I had a brain tumor. I remember feeling like I was in a dream as the Neurologist was telling me this and showing me the tumor on his computer screen. I didn’t quite comprehend the severity of the situation. To hear the Neurologist explain it, it was routine surgery, and it was going to be short and sweet. The recovery process would be quick since I was young, and I would be back to work in no time. I met with the Neurosurgeon and he explained the procedure more in depth that they were going to make an incision at the top of my gum line and go through my nasal cavity with a probe to basically drain and suck out the tumor like a vacuum. A month later, the time comes for the surgery, and the severity of the situation is kicking in. I’m obviously scared shitless, but I need to get this over with so I can move on with my life. I was expected to be in the hospital for maybe 4 to 5 days.

I remember waking up from my surgery, and there was a bunch of gauze underneath my nose and a bunch of liquid coming out. I felt as if I had a runny nose that just won’t stop. Come to find out, I had a spinal fluid leak in the middle of surgery, so they had to halt the surgery and deal with that issue. So now, I’m leaking from my spine, and the freaking tumor is still inside my brain! Mark had to call my family in Texas to give them the update and let them know that the surgery did not go quite as planned. My parents ended up flying out to Colorado (this was their first time flying ever, and they were in their 70s) to be with Mark and I. Mark told me after the fact that he had a conversation with my parents in the hospital cafeteria. My dad asked Mark if I had a living will or if he knew what my wishes were if anything should happen to me. In the years I’ve known Mark, he’s never been one to show emotion and cry. Except for this time, while he was telling me about this.  He said that he told my dad that we did not need to think about that because I was going to be fine.  He said he just walked away from my dad because he could not face him.

The Surgeon’s next plan of action was to insert a lumbar drain at the bottom of my spine to re-route the leak in the meantime, so they could determine what they were doing to do next. I had to sit and sleep upright so the liquid could drain out properly into an IV bag. They left that in over the weekend to see if that would help. Well, of course it didn’t. The Surgeon then explains that he has no choice but to make an incision from ear to ear along my hairline and cut part of my skull out so he can go in and not only fix the spinal fluid leak but also remove the tumor. Lucky me, it’s time for surgery #2!

I remember the morning of my second surgery like it was yesterday. That is one memory that has never left me to this day. The hospital had a transport team of nurses that would take you to wherever you needed to go throughout the hospital. They would either take you in a wheelchair or transport you in your bed. This particular morning, the transport team was too busy to come get me, so between my nurse and me, we were the transport team. I’m connected to all kinds of machines and a little monitor that looked like an old, small TV. I’m thinking to myself, how are we going to do this? I’m holding the monitor on my lap, and pushing my own IVs and she is pushing the other machines I’m connected to, and me in the wheelchair. I had to get an MRI first so the surgeon could map out a route to the leak and tumor. I remember getting off the elevator, and the MRI room had an orange tint to it, like it had orange colored light bulbs. One of my favorite nurses walked up, and he saw that I was crying and nervous, so he attempted to console me. Then I saw a nurse coming towards me with clippers in her hand because they were going to have to shave part of my head. I remember freaking out and immediately yelling profanities. Next thing you know, they are putting something in my IV, and I’m out. Good thing because I’m sure I was about to put up a fight with the nurse coming at me with the clippers.

Good news. The spinal fluid leak was fixed, and the tumor was removed successfully! Bad news. I do not remember too much after this surgery, but I do remember not being able to see clearly. The light bothered my eyes, and my vision was filled with shadows and blurry. The Surgeon explained to me that the tumor was further down than they expected, and he had to move my optic nerves out of the way to get to the tumor. He stated that he was surprised that I wasn’t completely blind because that is what he was expecting. I lost my peripheral vision in both eyes, half of my central vision. My field of vision is along the bridge of my nose.  Let’s just say walking around can be challenging. I get in such a hurry (since I’m a slave to the bus schedule) that I honestly forget that I am not seeing everything and everyone in my path. In my world, I’m seeing only what is in front of me. There’s a whole big world out there that I am not seeing, and unfortunately, it always feels like it is constantly sneaking up on me.

So much for being in the hospital for only four to five days. I was in the hospital for nearly a month, and spent Christmas in the hospital. I remember on several occasions when I was alone in my room in the ICU, a dark figure or shadow would appear in the chair nearby my bed. I really cannot explain it, but it was a dark shadow in a long trench coat with the collar up and a Fedora hat. It reminded me of the original movie, The Invisible Man. It just sat there like it was waiting for something to happen. To me, it was Death waiting to take me with him. I don’t remember being scared. I do remember looking at him and telling him to leave me alone because I was not going anywhere. I knew I was going to be okay, and I was going to be walking out of that hospital.

Before I left the hospital, I remember meeting with another Physician who explained he was going to be my Endocrinologist. I was like who, and what is that? An Endocrinologist is a physician who specializes in the Endocrine system. When they removed the tumor, not only were my optic nerves damaged, but also my Pituitary Gland. As a result, I was diagnosed with Panhypopituitarism, Hypothyroidism, and Secondary Adrenal Insufficiency. Call me naive, but I thought once they removed the tumor, I was going to be back to my normal self. So now, not only am I partially blind, but I will be dependent on steroids to keep me alive and other medications for the rest of my life. I cannot even begin to process this or understand what the hell is going on. My only choice was to suck it up and strap in my seat belt because I was about to get on the ride of my life.