Life is Full of the Unexpected

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!

Starting Over Pt 2

It's funny after I did my first post, I received a surprise phone call a couple of days later. It was him. My heart stopped and my jaw fell to the ground. I was quiet and didn't know what to say. He asked me if I had a document of his and I told him for whatever reason instead of shredding it, I had saved it. He told me he would text me his address and asked me to mail it to him. He then asked me how I was. I kept my response short but made it clear that I was doing better than ever. I was working with a personal trainer, my health was great, I sold the truck, and redecorated the apt. I asked him how he was. He was never one to like talking on the phone so his response was even shorter than mine. He said he was "plugging along". He said thank you for mailing the form and I said you're welcome and goodbye. I had to make a point to tell him that I redecorated the apt. It sounds silly but it has been part of my therapy. This is my sanctuary, solace, serenity, my peace. The day he left, I took the bus to Tuesday Morning and bought throw pillows, pillows for the bed, little decorative items to put throughout the apt. I need to backup and tell you that he hated any extra pillows. That was the first thing on my list of things to buy. After I'm picking out my items, I'm realizing how the hell am I going to carry these things? I'm taking the bus home! Luckily, a good friend of mine came and picked me up. This was the first day of my therapy and there was still more to come. Oh by the way, I bought 4 throw pillows and 2 extra pillows for the bed that day. Over the course of the following months, I also bought a bedroom comforter set that had 2 pillow shams and 4 decorate pillows. Oh, and I recently bought 2 Euro pillows. You can never have too many pillows! It's funny how little things can really change up a room.  I've found many of my purchases at the thrift store and clearance items at local stores,
He had a pickup truck that I could always here coming down the road a mile away. When he drove away that morning, the sound of his truck just consumed me. It overwhelmed me. Every time I heard a truck that sounded like his, I would freeze. Part of me would think it was him coming back. I hated to feel that way but that's just the first thought that crossed my mind. I had to make a point to keep myself busy with work, going to the gym, reading, anything to keep my mind from falling apart. I would be at work and find myself crying and then I would wipe the tears and have to put my game face back on. I would really break down when I was home alone. I didn't want anyone to feel sorry for me and think I was weak. I guess in reality, I saw myself as weak. It was tough but the busier I kept myself the better. I made the decision that I was going to step out of my comfort zone and try new things. A friend of mine sent me a coupon for a food delivery service that sends you meals with all the ingredients and preparation instructions for each one. You can select meals for 2 people, 4 people, or I think even larger families. It was fun to experiment with different ingredients and spices that I had never cooked with before.
I also started taking pictures of nature during my walks into work or when I would go walking during my lunch breaks. I've never been interested in photography but all of a sudden I found myself printing my photos and framing them. I've decorated my fireplace mantle with a few of my scenic photos. Again, another part of my therapy.
In the past 2 months, I started a new steroid Hydrocortisone. With all steroids, one of the many long term effects is muscle weakness. With this steroid, I felt it immediately when I would just be walking. My legs and feet would hurt and cramp up. It would hurt so bad it could literally stop me in my tracks. Now, since my only means of transportation is taking the bus and walking everywhere I need to go, this was a daily problem. One day I got the idea that I wanted to find a personal trainer to help me with weight training so I can try to combat the muscle weakness. For the past 2 months, I've been seeing a personal trainer Tony at a local gym who has been helping me.  I've always been intimidated by weights. When I've been to the local rec center, I've always been too scared to go into the weight room because I have no idea what or how to workout with weights. Working with Tony has been a whole new experience and has opened up a love for weights.  I'm being challenged physically and mentally. With having Adrenal Insufficiency, I need to be careful to not over do it physically because it could also hurt me if I put too much stress on my body. On these days when I feel that I've pushed myself too much, I need to take extra steroids to compensate for this. I'm steroid dependent so I have my normal daily dosage that I take which is 35mg and I need to keep it under this amount to avoid the muscle pain, swelling, and weight gain. If I exceed that amount due to being ill or if I need to stress dose, my dosage can go up anywhere between 5mg to 15mg. If I was to become ill, my Physician could advise that I double my daily dosage or in an emergency, I would need 100mg of Hydrocortisone injected immediately then go to the hospital. I keep my emergency kit on hand at all times just in case. Taking the extra steroids on those days when I feel like I have over done it helps me feel better but at the same time hurts me because I feel the side effects more. I have a love hate relationship with steroids but they keep me alive. I'm determined to not allow this disease to overtake my life like it has the past 8 years. I know that overall exercising has helped me feel better both physically and mentally. I'm pushing myself in ways that I've never imagined and I'm loving it!
This journey so far has shown me that I can live without him. I know in the beginning, I honestly wasn't sure. He was my drug. I craved his love, attention, and his body. He was my world and to suddenly lose that part of me was unthinkable. Even though deep down I knew I would be okay, a part of me still needed some convincing. It's taken some time but I'm finally getting to that point where I know in my heart that this had to happen in order for me to discover myself again. I had lost myself in this relationship because my only focus was to please him and for him to be happy. I know he loved me. He was good to me and took care of me and I will always be grateful and love him for that.
But now, it's all about me!

Starting Over Pt 1

It's scary to feel like your life is starting over at 45. At least for me it is. I've gotten so used to the routine of my life-my 14 year relationship, my job, my friends, my disease Secondary Adrenal Insufficiency. Now, the disease part was a wrench thrown into my life 8 years ago but that's for another post. The cause of this sudden change is that my 14 year relationship ended 6 months ago. You can say it was abrupt and came out of the blue, I have to be honest that I had a gut feeling a couple of months prior that something was wrong and it was serious. I saw him change in front of my eyes in just a matter of months. It was as if a switch went off and he was a different person. I tried to talk to him to find out what was wrong but even he wasn't ready to face it or admit it to me. It took 2 months for him to finally have the courage to voice that he was unhappy and he was leaving me. I guess since I did have somewhat of a head's up, I had to accept it. I didn't fight it, scream, or beg and plead him to stay. I told that I hope he finds himself and the happiness that he's looking for. He did say that he was surprised that I was taking it as well as I was. Of course, I was crying and heartbroken in front of him but that was the last time he saw me that vulnerable.

He never gave me any explanation to what caused him to come to this decision. He never told me where he was going to. He just said he was leaving and that was it. I never once asked him where he was moving to or what his plans were.  I figured if he doesn't want to tell me, I'm not going to ask. It's probably best that I don't know. It took him 2 weeks to officially leave after he confronted me and it was one of the darkest periods of my life. I was living with a roommate not my lover, friend, or confidant.  A complete stranger.  He had disconnected himself from me emotionally and physically. He was not the man I fell in love with. He was cold and distant. I believe he did this in order to make it easier for him to leave. The morning he left was like I was saying bye to an acquaintance. He did manage to put his arms around my shoulders like a half ass stiff hug. All I said was have a nice trip and he said thank you. Those were the last words we spoke to each other.