Ninja Down

After a year of working in Records, I began to experience health issues around June 2007. At the time, I had been actively going to the gym in the mornings before work. My energy levels suddenly went from 100 to 0 overnight. I was feeling weak, tired, started having issues with my vision, and had unbelievable migraines that I had never experienced before. I had never encountered any serious medical issues prior to this so I just figured it would be a simple fix. I went to see my primary physician and he ordered different types of blood work and of course, everything came out fine and he exhausted all the tests he was able to run and did not find anything abnormal. He ended up referring me to a Neurologist for further evaluation and I told him that I thought he was overreacting. I did not think that was necessary but told him I would think about it. I remember leaving his office and was walking back to work, and something told me to stop and call the Neurologist’s office. I ignored it and again my gut instinct was telling me to stop and call. I stopped and called the office and made an appointment but still felt that it was a waste of time. After meeting with the Neurologist and going through a series of tests over a span of a couple of weeks, I recall sitting in his office and he was pointing at an image of my brain on his computer screen and informed me that I had a Craniopharyngioma which is a rare type of noncancerous brain tumor. A Craniopharyngioma begins near the brain’s pituitary gland, which secretes hormones that control many body functions. As a craniopharyngioma slowly grows, it can affect the function of the pituitary gland and other nearby structures in the brain. In my case, it was not only near the pituitary gland but had also been taking up space near my optic nerves which explains the problems with my vision and migraines I was experiencing.

I do not remember freaking out or crying upon hearing this news, but it felt more like a dream. It was like I could not hear what he was saying but I could see his mouth moving. I can describe it like in Charlie Brown when the teacher’s voice is muffled. I eventually asked him if he would not mind going over that again because I did not hear a word he said. This was around the end of October 2007 and the plan was to schedule an appointment with the Neurosurgeon he referred me to and discuss what the next step was going to be. I met with the Neurosurgeon in November 2007, and he explained the procedure he would perform on me was called a transsphenoidal tumor surgery which means the surgeon goes through the nasal cavity to get to the tumor. It was like a tube-like vacuum, and it would drain the tumor first then remove it. The date of the surgery was set for December 10, 2007. I remember the night before we stayed in our favorite hotel in downtown Denver and went to dinner and a Denver Nuggets game. I remember speaking to my niece that evening and honestly do not remember feeling scared or worried. If anything, I was anxious to get it over with so I could move on with my life. We arrived early the next morning so they could get me prepped for surgery. I think once this was happening, the reality of the situation started to sink in, and I was beginning to feel a little nervous.

In the middle of the surgery, as they were attempting to get to the tumor, I developed a spinal fluid leak, so the surgery took a bit of a detour. When I woke up from recovery, my nose had these skinny tubes in each nostril and a bunch of gauze underneath my nose. I could not breathe and there was clear liquid coming out of my nose like a constant runny nose. Well, that was the spinal fluid leak and eventually, they ended up having to put a lumbar drain at the bottom of my spine to reroute the leak. Oh yes, and the tumor in case you are wondering, was still in there because it was further down than they thought and with the leak, they had to stop the surgery. So not only is the tumor still there, but I have this waterfall coming out of my nose. The Neurosurgeon explained that the next plan of action was to take care of the leak and he was going to have to perform a different type of surgery to remove the tumor. He ended up having to do a Craniotomy which is the surgical removal of part of the skull to expose the brain. He was going to make an incision from ear to ear and remove part of my skull on the right side. The surgeon would have to do a specialized MRI the morning of the surgery to find the best route to get to the tumor. I will never forget the morning of the second surgery December 20, 2007.

So let me rewind a little bit. At the beginning of all this when I was first informed of the tumor, I called my family and explained everything to them and assured them that they didn’t need to come to Colorado because as the Neurologist stated to me this was routine surgery and I would be out of the hospital in less than a week if all went according to plan. I told them Mark (my boyfriend) would keep them updated. I especially did not want them to come because it was in the middle of winter and we were getting pounded with snow and being from Texas, they are not used to this type of weather and moreover, they had never flown before. Well, after the first surgery my prognosis turned serious, and the situation was not going to get better any time soon so Mark had to make the call to my family to inform them of what was going on. Well, mom and dad made the trip to Denver, and thankfully with the help of my sister-in-law Kim, they found a place for them to stay that was near the hospital and had a shuttle that would transport them to and from the hospital. It was a nonprofit organization that had a home where people from out of town could stay if they had loved ones in the hospital. It was a blessing to have this available for them because the only other option would have been a hotel and that would have been costly. Prior to my second surgery, the surgeon had a talk with my parents told them if I survived, I would be blind. He was explaining the spinal fluid leak complicated the situation more and made the surgery that much riskier.

Back to the morning of the second surgery. Since I had to have another MRI before surgery, I needed to be downstairs in imaging early so my nurse calls transport (two guys) assistance who would transport me in my bed to the MRI lab downstairs while she would push along the IV stands and the monitors I was attached to. Well, for whatever reason transport was not available so between myself and the nurse, we had to push my IV stands, heart monitor, this other small TV-looking machine, etc. all the while her pushing me in my wheelchair. So, I already was nervous and stressed so this did not help calm my anxiety. I remember being in the elevator and as soon as the elevator opened, I see my regular morning nurse who I just adored, and I just lost it and was having a meltdown. So, he starts to take away the monitors on my lap and tried to calm me down. Then there was this nurse coming at me with clippers telling me she needs to shave my head. My immediate reaction was, oh hell nawwww! So, I went from crying and having a meltdown to wanting to take down this lady because there was no way in hell, she was touching my head. I was all sorts of jacked up physically, but I was still ready to throw down! So, my nurse took matters into his own hands and gave me a little something to chill me out because the next thing I knew I am out. I do not remember much after that.

When I finally came after recovery and was awake, I immediately felt like my head weighed a thousand pounds and I also noticed that I could not see anything. Everything was blurry and I was seeing dark shadows. Since I had no recollection of the conversation that the surgeon had with my parents about the possibility of being blind, I did not know what was happening to me. After Mark cornered the surgeon in the hallway asking, “what the hell did you do to her?”  The surgeon explained that the tumor was further down than they thought and part of it was resting near my optic nerves. He had to move my optic nerves to reach the tumor, and as a result, I lost part of my vision. The good news was despite losing my peripheral vision, I still had part of my central vision. My field of vision is along the bridge of my nose, so I have one good eye right in the middle. He also stated that there was a possibility that this was going to be permanent. He did not know for sure and all he said was we needed to give it time. My eyes were sensitive to light so the remaining of my time in the hospital was without lights in my room. I eventually had to go to see a Neuro Ophthalmologist and was diagnosed with Traumatic Optic Nerve Neuropathy. The Ophthalmologist told me that my vision would either stay the same or eventually get worse. It has been 15 years and so far, it has remained the same. I have days where I have blurry vision and the shadows that creep up on me but that just means I need to rest my eyes and take it easy. I am still thankful for the vision I do have because it could have been a different outcome.

That was the good news now for the bad news. Before my discharge from the hospital on December 25, 2007, I had to meet with an Endocrinologist who was now going to be one of my regular physicians. I honestly did not know what an Endocrinologist was so that was the first thing I asked. The physician began to explain that because of the damage to my pituitary gland, I was diagnosed with Panhypopituitarism. I apologize in advance, but here we go with the medical terms. Panhypopituitarism is a condition in which the production and secretion of all hormones by the pituitary gland are reduced. The pituitary gland, which is also called the master gland of the body, is a pea-sized organ located in the center of the brain. It is like the command center of your body. I was also diagnosed with Secondary Adrenal Insufficiency. This condition happens because of a problem with the pituitary gland at the base of the brain. It makes a hormone called adrenocorticotropin (ACTH) which is a chemical that signals your adrenal glands to make the hormone cortisol (the body’s main stress hormone) when your body needs it. If your adrenal glands do not get that message, they may eventually shrink.

I know all these medical terms are keeping you on the edge of your seat! Just wait, there is more! The adrenal glands are located above each kidney. They make important hormones that your body uses for some of its most basic functions. When they do not make enough of those hormones, you have a condition called adrenal insufficiency. Your adrenal glands have two jobs. The first is to make adrenaline, a hormone your body creates in times of stress. But the more important job is making two steroid hormones, cortisol, and aldosterone. Cortisol helps your body deal with stress and its other important jobs are that it controls your blood pressure and your heart rate, controls how your immune system deals with viruses, bacteria, and other threats, and puts more sugar into your bloodstream to give you more energy, and adjusts how your body breaks down carbohydrates, proteins, and fats. Aldosterone keeps the sodium and potassium in your blood balanced, which helps control your blood pressure and the balance of fluids in your body. I am constantly craving salt. I can feel when my cortisol levels are low when I am not feeling well and to avoid taking an additional dosage of steroids to compensate for how I am feeling, I will try eating something salty first in hopes that will make me feel better. I always have sea salt chips around or other salty snacks around. Most times, I do have to stress dose and take an additional dosage of my oral steroids to feel better and to avoid any adrenal crisis.

Cortisol is important for life and its production by the adrenal glands is especially important at times when the body experiences intense stress, such as surgery, trauma, or serious infection. If the adrenal glands cannot produce enough cortisol, the body may not be able to cope with this kind of major stress, which can be life-threatening. This situation is called an adrenal crisis and is a medical emergency. I am steroid-dependent and take a regular daily dosage of my steroids on a schedule of every 4 hours. From the time I wake up to my last dosage in the early evening. This is fuel for my body like gas is for your car and it keeps me functioning and alive. I am trying to mimic the steroid levels my body would normally release throughout the day by taking oral steroids. In the event of an adrenal crisis, I have my emergency kit that contains 100mg of liquid steroid in a vial that is to be injected intramuscular and I need to be transported to the hospital immediately. Timing is crucial when you are in the middle of an adrenal crisis and any delay of treatment can result in death. I have had several adrenal crises’ and they are scary because I can feel the life draining out of me before I end up passing out. I cannot put into words how grateful I am for the medical personnel that responded quickly in these instances.

I had the same experience with the Endocrinologist as I did with the Neurologist in the beginning. I could see his mouth moving but I could not hear a word he was saying. I had just had brain surgery so my motor skills were off and could not process much of what was happening around me. It is like why would you dump all this overwhelming information on me while I am in the physical and mental state that I am in? I could barely remember my name. All I knew at that moment was I just wanted to get out of the hospital and get back home before anything else happened. It was comforting to have mom and dad there and they would get to spend time with us in Breckenridge. We were going to do our best to enjoy the holidays.

It can only get better from here, right?

Stay tuned….