It was 8 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, optic nerve, and pituitary gland. At the time, I was healthy and worked out at the local gym on a regular basis. I had been at my current job for a year and just purchased a brand new 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), weak, 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 is 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 vaccum. 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 maybe 4 to 5 days.
I remember waking up from my surgery and there is 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 didn't go quite as planned. My parents ended up flying out to Colorado (this was their first time flying ever and they were in their 70's) 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's telling me about this. He said that he told my dad that we didn't need to think about that because I was going to be fine. He said he just walked away from my dad because he couldn't 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 determne what they were doing to do next. I had to sit and sleep upright so the liquid could drain out property 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 get the tumor out. 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 were too busy to come get me so between my nurse and myself, 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 "TV" on my lap, and pushing my own IV's 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 sees that I'm crying and nervous so he's attempting to console me. Then I see 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 probably didn't have very nice words for this nurse. 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 kick that nurses ass with the clippers!
Good news. The spinal fluid leak was fixed and the tumor was removed successfully! Bad news. I don't 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 like I was looking through binoculars that were dark and blurry. The Surgeon explained to me that the tumor was further down than 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 in my right eye and about a little less than half of my central vision in my left eye. My field of vision is on the bridge of my nose. So it's like I'm constantly looking through binoculars. Let's just say walking around can be challenging at times. For example, I have to be careful when I'm walking around the grocery store because I've come pretty close to knocking down the aisle displays and people. I get in such a hurry (since I'm a slave to the bus schedule) that I honestly forget sometimes that I'm not seeing everyone. In my world, I'm seeing only what's in front of me. There's a whole big out there and unfortunately, it always feels like it's constantly sneaking up on me! Literally.
So much for being in the hospital 4 to 5 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 ICU, a dark figure or shadow would appear in the chair near by bed. I really can't 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 wasn't 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 they explained 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 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 I'm partially blind, they tell me that I have this disease, and I will be dependent on steroids and medications for the rest of my life. I can't even begin to swallow this pill or understand what the hell is going on. Nor did I have a clue as to what was ahead for me. 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!
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