The Appointment

So the last time I wrote, I was going to my childhood Neurosurgeon. It was an emotional rollercoaster to say the least. I was lucky enough to be able to take a picture with the nurse that helped put a smile on my face at 4am when I was laying in the ICU wide awake because of the discomfort, lucky enough to hug the Neurosurgeon that removed the tumor, and luck enough to remember just how LUCKY I am to have made it!

As I sat in the waiting room with small children, coloring books on the side tables, a cartoon movie on the TV and walls that were all different colors; I couldn’t help but go back to being 13 years old with my Mom’s hand over mine as we waited to be called back. I had no fears back then. It was just something I was going through. I didn’t realize the actual risks and consequences I’d be facing afterwards.

I was brought back to reality when my name was called. I smiled, asked my parents if they wanted to come with me, picked up my purse and headed down a hallway with pictures on the walls, of children who had survived and were smiling. There were letters that were written to the staff of how grateful they were to have gone through that experience there.

Once I got to the exam room I let my parents sit in the two chairs that were there and I leaned again the exam table. It was a lot smaller than what I’m used to now. I looked around and as much as I told myself I wouldn’t, I went back in time again. Again I was brought back when my childhood nurse walked in and said “Hazel? You haven’t changed at all!” haha I teared up and asked if I could give her a hug. As we embraced she told me she remembered me and my parents. She said I looked great.

We talked about my scans and what I should expect for when the doctor came in. We talked a little bit about life ever since the surgery. Then she said she would be back when the Doctor was ready to see me. I joked around with my parents as I saw that they were obviously nervous and slightly uncomfortable.

The Doctor came in and believe me when I say, this man doesn’t age! He hadn’t changed at all. He came to me and gave me a hug. I thought, “there’s no way he remembers me or my case. He must have done who knows how many surgeries since mine!” I was wrong. He asked me about a problem I had after the surgery, asked me about the physical therapy and asked very specific questions about my current pains.

We discussed me having the ommaya reservoir removed. The plus side, the risks, the “what ifs” and everything in between. He said he wasn’t able to do the surgery but that he would recommend some Neurosurgeons at a hospital closer to me. He even placed a call with them to make sure they reached out to me directly.

I walked out of there feeling hopeful. Hopeful that I would have this tube removed and not have to worry about the headaches any more. I also walked out of there thinking about the risks. This has been in my head for over 20 years, what if they went in and it shattered? The unknowns are probably the worst part. We don’t know what will be seen once they go in. We also don’t know what will happen after it’s removed. As we know, there are no guarantees when it comes to brain surgery.

As I walked to my car I thought about next steps, I didn’t want to rush anything. It was time to weigh the pros and the cons. I will say, I’m happy I was able to see the people that helped save my life. I am one of the lucky ones that was able to go back and say, “Thank you.”

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I’ve got this…

I was able to make an appointment with my original Neurosurgeon for the 25th of this month. On one hand, I’m excited to get some answers. I’m happy that I’m seeing the person that removed the brain tumor and that placed the Ommaya Reservoir in there. I mean, he was with me for years, he knows exactly what was done.

On the other hand, I’m scared out of my mind. I have to actually face everything again. I’ve been in communication with one of the nurses that was on my case. That alone, I mean, these nurses were the best! However, if I do remember her, it’ll take me back to laying in that bed with tubes coming out of my head. It’ll remind me of the pain, the anguish, the stress…. These are things I never faced. I just kind of shoved them into the farthest part of my memory and continued on with life.

There are so many things that I didn’t realize I “ignored” for so long. I didn’t face the fact that I never had a childhood, I didn’t grow up the way most kids do. My life was spent in the hospital, getting tests done, getting bloodwork every other day. I remember the surgeries and the sad looks I would get from everyone around me. The physical therapy I had to go through to walk again, write again, be “normal” again. My life was completely different than all of my classmates and that was hard for me because I was alone. No one understood.

I’m also scared because since I first noticed the squishiness, it’s only gotten worse. The headaches, pains, the blind spots/vision issues, the noise irritation…. I just want to make it all go away. I am scared for what he’ll say. I mean, let’s be honest, I haven’t had the best luck with my health. I’m worried about another tumor being in there, or a clot, or who knows what else it could be. I know, I know, I need to think positively. Believe me, for the most part, I am. However, I am human. So if I’m being honest with myself, I’m nervous.

Here’s the thing, I know that whatever he says, whatever the tests show, I’ve got this. I mean, I’ve made it this far right? I have God, my family and some amazing friends! I can do this, I’ve got this.

Sometimes We Have to Face Our Fears

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Every morning I wake up, I am thankful. I try to remember to smile right when I open my eyes, I thank God for giving me another day and then I lay there. I let the stillness settle within me and prepare myself for whatever I may feel once I get up.

Most days, it’s a headache and the pain in my side that really mess with me. The pain in my side has gotten worse, to the point of causing me to throw-up every once in a while. It used to just cause nausea. It worries me because it means something is getting worse. Something that doctors couldn’t find when I first had my appendix removed.

Having had some time pass since my last doctor’s visit, I’ve decided I’m going to try again. Mainly because I don’t know how I’ll get up if it continues to get worse. I don’t know a lot of things. I don’t know what will come next. I don’t know how I’ll handle it. I don’t know what is causing this pain….

Here’s what I do know. I know I’m strong enough for this and so much more. I know I see life differently from most. Most of all, I know I have God on my side. Everything that has happened to me, has made me who I am today. He has a plan for me. Almost on a daily basis, when outside, I will stop and close my eyes. I think of how blessed I am to feel the air, hear my heart, feel love.

Life can be so hard and challenging. It’s what makes us who we are. Am I scared, absolutely! Sometimes I get mad, sometimes I’m sad, most of the time I’m tired. But at the end of the day, I’m happy. I’m happy to know that these things are happening to me instead of someone else. I’m happy because I’m told that I have a huge heart and that I love “too much.” Is that possible? Can you love too much? I don’t think so.

Even after all that I’ve been though/am going through, I still love. I love my family who never leaves my side (even when I let the pain get the best of me). I love my friends who check in on me and let me talk to them about my health when even I’M sick of hearing about it. I love life, the life that has taught me that everyone has a story and everyone has their struggles. I love God, who, in my darkest moments has held my heart and reminded me that, I am love.

I may not always be a bundle of joy but what makes me happy, is knowing that I will get over whatever obstacle comes next. So, I’m going to face my fears and make some appointments. The one for the surgery pain and the one for the MRI.

Faith is Seeing Light with your Heart….

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Once they called my name I started shaking. I thought I felt fine but my body was telling me otherwise. They took my weight, sat me down in a room and asked me what was going on. I swear I must sound like a robot reciting it by now! To avoid that, I put it as simple as I possibly could.

“Well, a few weeks ago, I felt my Omayya reservoir and it felt squishy after 21 years of it feeling hard.” I think he was expecting more because he just sat there looking at me. However, I had nothing more to say. I thought “If you have questions, ask them. Otherwise, I hope you read up on my file and all of the information I had sent over.” He finally said, “Well, they are supposed to be soft. They aren’t supposed to be hard.” “I don’t know what to tell you but for 21 years that thing has been hard and as of 3 weeks ago, it became squishy. I just need to know if it is something I need to worry about or not” I told him.

I’m sure you’re thinking “oh my gosh, this girl is rude!” but here’s my side of the story. I have had umpteen health issues since the tumor was removed. Most haven’t been found until 5-10 doctors later. I’m sick and tired of spending the money, of hearing these doctors who stay in there little box. Heck, if it wasn’t for one doctor (after going to many other doctors first) who said “you may just have migraines but let’s do a CT scan just to make sure.” I may not be here today. My endometriosis wasn’t found until YEARS after the pain started and many different treatment plans for “horrible cramps.” My carcinoid tumor would probably still be inside of me and growing had I not insisted that something just didn’t feel right, this pain wasn’t normal. So yes, I’m a bit frustrated with doctors. Not to mention, this one couldn’t have been much older than I am (I’m 34). So forgive me if I don’t think you have the years of experience and wisdom to be able to handle my case.

Then he tells me that it could be a number of things and that with just a CT scan, he just couldn’t be 100% sure. I could tell he didn’t want anything to do with my case. He said that the thing to be worried about now is that it could be the tumor growing back. Ummm…… what? I mean, are you serious? Another tumor? I kind of tuned him out at this point, I seem to do that a lot with doctors. He summed it all up with the need to get an MRI to see it in detail.

I walked out of there feeling tired, defeated. I feel like a 34 year old stuck in a 90 year old’s body. So now to scheduled this MRI.

I’m Scared and That’s Okay

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As I sat in the waiting room, I just thought “No big deal, everything will be just fine.” and started thinking about all of the great things I have going on in my life. I sat there for a whole 5 minutes before they called me back to get my vitals. After that, I sat back in the waiting room.

Once I was taken back to a room, they had me change, put an IV in and took blood. Then the testing began. Someone came in and explained they were going to take me to get a CT scan. She asked, “Have you ever had one before?” to which I answered, “yes.” and in my head thought “About 30 so far.”

After the CT scan, I was taken back to the room and as I laid there with my eyes closed just soaking everything in, I heard doctors nearby. I opened my eyes and saw them standing right outside my door. One of them came in and told me there were no signs of hydrocephalous.

I felt as though I sighed for a whole minute. That would have been the worst case scenario and to hear that there wasn’t any liquid, well, quite the weight lifted from my shoulders. At least that’s what I thought at the time.

They suggested I make an appointment with my Neurosurgeon to get further testing to see what is causing these headaches, pains and squishiness. Here’s the problem, I don’t have a Neurosurgeon. I stopped going to my yearly appointments years ago! It was hard being their little guinea pig.

I called my insurance to get a list of these doctors that are near me. Once they emailed it to me, I eeny meeny miny mo’d it, made an appointment and went home to get all of my paperwork in order. I can’t stand going to new doctors because filling out the medical history portion is a nightmare!

Let’s skip forward to the appointment. As per usual, I arrived early. Once I parked my car, I sat there for a moment, just looking at the building and remembered what it was like when I used to go to my neurosurgeon all of the time. I thought to myself “You’ve got this. It’s just a doctor’s appointment. Nothing to worry about.”

The building was new, modern. When you walk in, there’s a rather large desk for any questions you may have. They directed me to the elevators and told me to go to the third floor. I was doing well so far! Just a bit of anxiety, that was all. That changed quickly as I got on the elevator. I felt nauseated, dizzy and started to tear up. I tried to calm myself down, waved a piece of paper in front of my eyes to try and dry them up quickly.

I walked into the office, signed in, gave them the paperwork I had filled out and sat down. The tears just rolled down my cheeks, I was trying to be strong but it wasn’t working. It was time for me to be honest with myself, I was scared and that’s okay.

Time to Truly Face My Past

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So, I’ve recently had to face my past head on. I thought I’d be better at it than I am. You see, the Ommaya Reservoir (click on it for the definition) that was left in my head seems to have an issue with it and my head is squishy. I can’t help but giggle when I write/say that. It just sounds so odd!

Occasionally, it will hurt but I typically just massage it before bed and it’s fine in the morning. All 21 years, it’s been solid. A week ago, my head was hurting so as I laid down to sleep, I started to massage the area. When I moved my finger over, it went into my skull. At least, that’s how it felt. I sat up, started feeling around and noticed that all around the reservoir, it felt like a waterbed. As I normally do, I decided to watch it over a few days to see if it would just “go away.”

Surprise! It didn’t go away. In fact, I started feeling a lot of pressure and pain. When I called the doctor’s office, they started asking me all sorts of questions about when it was placed. They weren’t the friendliest and I felt stressed that I couldn’t really answer their questions.

I called the hospital where it all began, left a message for a nurse and waited. The whole time I told myself to stay calm, it wouldn’t be anything serious. I read, wrote and ate, felt like hours had passed. When I looked at the clock, 23 minutes had gone by haha. Great, now time had significantly slowed down.

When the nurse called me back, the next day, I went through a rollercoaster of emotions. She told me she had looked me up and started reading my file to me. This took me right back to being 13 and in the hospital. She named my doctors, stated things that had happened and asked me how she could help me. It caught me off guard, to hear the names of the doctors on my team, to hear the results from after the operation… I didn’t react the way I thought I would.

You see, in my mind, this would be a painless phone call. One where they would be able to send me the information I needed and that would be it. However, it opened a chapter of my life that I had closed as much as possible. You know in TV when there’s a closet that people shove everything in and then must squeeze the doors together for it to shut? That’s what I had done with this chapter.

Once we got off the phone, she sent me an email with all of the information and told me that her suggestion was to head to the ER to rule out Hydrocephalus (click on it for the definition). I sat down and thought about it. After a few hours, I decided to head to the ER. All I kept thinking was…. “Here we go again.”

I was…..Happy?!?

***scroll to my first post to start from the beginning***

As mentioned before, swimming was just the greatest therapy. I rarely felt any pains while I was in the pool. Luckily, the gym I went to was open 24 hours a day, 7 days a week. I always chose the lane closest to a wall that was made of windows. I loved feeling the cold air in the winter time. It made me appreciate the temperature of the water that much more.

It’s hard to explain just how much good swimming was for me. It relieved everything for me! I felt at peace when I walked out of the gym. I would almost always stop right as I took that first step outside and just take a deep breath. That sense of peace was rare for me. I hadn’t felt that in years.

At first, I would think of the pain I was overcoming. The headaches, heartaches, “left-side” pains and all of the other fun things I felt ever since the operation. It was a sense of accomplishment after years of feeling nothing was ever going to change. I was all smiles.

On top of the physical benefits, I was thinking clearly. That’s something I hadn’t felt in a long time as well! Picture this, someone at work asks you when you sent an email for a response they were waiting for. I would honestly stand there and have to think about it even if I had just sent it an hour ago. Imagine meeting up with friends after work and them asking you how work was and you saying “good” but honestly not even remembering what happened that day. There were times that people would ask me my birthday and I would have no idea what day it was. I started having to write things down or think of witty answers to cover up the fact that I simply didn’t know the answer.

All of that started to change when I changed my diet, started meditating and began my spiritual relationship again. I’m not saying this is the answer for everyone, I’m saying it was my answer.

For those that suffer from anxiety, I found meditation helpful. It calmed me down in an incredible way. I didn’t start out meditating for an hour, I started with a few minutes. I would close my eyes and either focus on my heartbeat or my breathing. Once I was able to do this for longer than a minute, I would focus on how I was breathing.

Now, during previous years, I had cried so many times that by now, I was unable to cry. I had taught myself to lock those feelings up and not allow them to arise. So when sad things would happen, I would either be stone cold or I would laugh. I didn’t think they were funny, I just didn’t know how to react to them, that’s how my body reacted now. However, when I would sit down and meditate sometimes, I would feel a tear or two roll down my cheek. I was never thinking of anything, they just came out. It was a hug sense of relief!

So, all of these changes were truly a blessing. I was becoming the person I had wanted to be all along! I’m smiling just remembering how that felt. I was…. Dare I say…. Happy. I hadn’t used that word in years. I’m so thankful I was better because the obstacle that was ahead of me was going to test me, not just physically but mentally and emotionally as well.

There is a Light at the End of the Tunnel

***scroll to my first post to start from the beginning***

The years went by and it continued to be my downfall. I tried telling a couple of people but it didn’t help. If anything, they would just start treating me differently. I just didn’t understand why I was always sad, and being so young, I didn’t know how to handle it. So I learned to smile through it.

I remember bits and pieces from the years that followed the operation. I remember going to Venezuela to visit our family. Those memories are amazing! Venezuela is a beautiful country, going through some rough times right now but back then, it was gorgeous. We went to the desert once and I was afraid I would get lost because all I could see was an ocean of sand that seemed never ending. The beach was probably my favorite because I’ve always been in love with the ocean. Well, the water. One time, I swam too far out and if it wasn’t for a friend who grabbed me by the waist, I would have been swept away. I loved being there though. Being with my family and feeling that love, there’s no greater feeling. I would lay my head on my Aunt’s lap while she played with my hair, family would come over at night and we would listen to music and dance. Those are my greatest memories… but I digress.

During this time, I had lost my relationship with God. At least I thought I had but what I didn’t realize is that he had carried me through while I found myself again. I realize that not everyone believes in God but I do. It’s what I have faith in…..it’s my higher power. If someone was to take all else away from me, they wouldn’t be able to take that. At some point, I actually realized that he had never left me but the time that I felt he had, was the worst.

My “finding yourself” years were hard as they can be for most. In my mind, I was someone who was always going to have headaches that, at times, would just make me want to scream from the pain. I was someone who was always confused, sad, in pain, tired and, well, lost. While trying to deal with the difficulties of growing up with phantom pains. Oh yeah, those are fun.

You would think that not being able to feel on your left side wouldn’t be so bad but here’s a secret not many know. Not a day goes by where I don’t feel like someone is cutting a part of my body off or someone is stabbing me. My brain is confused, it seems to think things are happening when they are not. What that means, is that I can be standing around at work and all of a sudden feel like someone is sawing my foot in half or as though someone is sewing a part of my head. Weird huh? It’s not fun but I’ve learned to handle it as best I can.

Here’s the thing, If you’ve had a brain surgery, you will never be the same again. Some people will never get that and it took me a while to understand it and to realize my new reality but that can be hard. Because your world stops but the rest of the world keeps going. You have to learn to live again and get back to some sort of “normality” but you’re doing it by yourself and it can take a very long time. No one else can do it for you. You have to be prepared for that. For some, it’s learning to do things again that they had done all of their lives. It’s realizing that you may never do certain things again.

I battled with these sad feelings for about 10 years by myself but I don’t want to dive too far into those years. I’ll just say, I would find different ways to try and “cope” but they weren’t the right ways. Finally, around the age of 21, my Dad suggested I try a new diet. He wanted me to try this “Gluten-Free” diet. It wasn’t known the way it is today and me, being the oh so wise one at the ripe age of 21, thought “what the heck is that going to help me with!!” and I didn’t do it. You know, because I knew everything at that age. (insert rolling of the eyes)

Around the age of 23, I decided to try it. I mean, he wouldn’t stop suggesting it telling me all he had researched about it. He’s amazing. I cut everything out and started eating a lot of salads. Back then, there weren’t sections in the grocery stores for just gluten free foods. So it was harder to find things to buy. Obviously, fruits and vegetables were the easiest way to go.

Within two weeks of this diet, I started feeling a difference. I wasn’t as tired, sad, confused…. I felt like, for the first time in years, I was in control of my life. Even writing this now, I can remember what a great feeling that was. I can’t help but smile. I’m not going to say that all of my problems were cured but I was much better than I had been.

My life was finally going in the right direct. I started getting up around 3:30 in the morning to swim before heading into work. Swimming is my greatest form of meditation. Once my head is submerged, it’s just me and my thoughts. The rest of the world disappears and all I can hear is my breathing and my heart. It clears my mind in the most spectacular way. Things were looking up!

The battle begins…

***scroll to my first post to start from the beginning***

So, now we begin with the really hard part. During the surgery I lost my serotonin. I didn’t realize it then but this was going to have a huge impact on the rest of my life, at least it has so far.

Once I was able to return to school I noticed it wasn’t the same. I wasn’t able to focus, things were much harder for me to understand and I would feel fatigued by midday. On top of that, I started feeling sad. I didn’t know why, I just always felt lonely and down.

Let me step back a second and explain something about myself. I was the young girl who was always happy, always smiling. My Dad once told me, “We gave them [the hospital] our daughter but they didn’t return her to us.” He said that because I had completely changed, almost overnight. That broke my heart but I know it broke my parent’s hearts even more.

Now, going to school wasn’t the problem. In fact, I didn’t even know what the problem was. All I knew was that I was very sad…all of the time.

My family and I are from Venezuela. In the Hispanic culture, depression didn’t exist back then. “Oh, you’re sad? Go take a nap, you’ll feel better when you wake up.” So, at the time, I didn’t realize that that’s what I was going through. I felt alone and couldn’t figure out what was wrong with me!

So here I am, a teenager trying to figure herself out, recently back to school after having taken a semester off and dealing with an internal battle. I was depressed but didn’t know it. I thought something was wrong with me. In fact, I KNEW something was wrong with me. Why couldn’t I just get over it?! Why couldn’t I just snap out of it?!

I had no clue how to handle the sadness I was feeling inside. You see, by nature, I am a happy person! However, that doesn’t matter when you’re depressed. I would battle with myself, trying to be ME! I was desperate to “get over it.” How was I supposed to release these feelings?!

Well one day I took a knife, sat on my daybed and, without thinking twice, I cut a small line on my right arm. A lot of people think this is done for attention. I can promise you, that isn’t always the case. What I realized was that for those seconds, while the knife was cutting through my skin, I didn’t focus on the pain that I felt inside but the pain I felt on my arm. For those few seconds, I was free.

I would do this on a daily basis. During school, when I would start to feel overwhelmed/sad, I would run into the restroom and cut. What people don’t realize is that this was the only way I knew how to release the pain. I didn’t WANT to do this, but I wanted the pain I felt on the inside, less. Most of the time, I would cry as I was doing it and afterwards, I would feel guilty. It became a vicious cycle.

My grades began to slip, I didn’t want to see anyone, not even my family. I wanted to be alone because something was wrong with me. I was always down and who wanted to be around that?!

Since I couldn’t ignore everyone, I learned to smile and laugh. No one ever suspected a thing and, to me, that was an accomplishment. This went on for quite a few years before I even mentioned something to anyone.

One day, I was in the car with a family member and I tested the waters. I said, “hey, I have a friend at school who has been cutting herself. Why do people do that?” This person, who I look up to, says, “That’s stupid. She just does that for attention.”

I know for a fact, that if this person had known that I was the one, they would not have answered that way, but gotten me the help I needed. However, because I withheld that information, I learned that I needed to keep quiet. It was my secret to keep. I was alone.

 

Getting back to “Normal”

***scroll to my first post to start from the beginning***

This next part is something I remember in bits and pieces, it’s a bit harder for me to write. I remember my parents helping me walk into the house. Walking by the dining room table I saw balloons. They set me down on the couch and I popped one of the balloons that had a stuffed animal inside of it. Then my memory jumps to me being in my room and I remember just standing in front of my bed where there was the large stuffed animal I had asked for! My parents did everything possible to make my return home, a welcoming, loving event.

The pets were kept locked up because I was still very weak and my scar was still very much exposed. They had had to shave half my head and so I was left with very little hair, mainly on my right side. My mom would braid my hair into sections and I remember her being afraid of hurting me but I don’t remember it ever hurting.

Obviously a lot of therapy was required for me to return to “normal.” (I would later learn that my normal had drastically changed.) I remember my dad taking me to therapy and at first it was fine. They would put a box of sand in front of me and it had paper clips and pennies… I was told to reach in there and take out whatever I felt, whatever was in there and then, with my eyes closed, tell them what it was I had just taken out. I didn’t realize how much of a challenge this was going to be. Remember, I couldn’t feel my left side and that was my dominant side.

Writing this, my heart aches for that 13 year old girl. I remember the therapist telling me “You can do it, just feel around.” What did he think I was doing? I WAS feeling around, I just couldn’t feel anything. When I would take something out, and it wasn’t just a bunch of sand, I wouldn’t know what it was so I would guess. Sometimes I would get it right and the times I didn’t I could almost feel his frustration. How did he think I felt?

The next thing I remember, was going back to school. I was told that they made an announcement to the whole school, that I was returning but not quite the same. That’s not verbatim but it basically sums it up. I couldn’t get on the regular bus because I needed a wheelchair and a full day would have been too much for me. So a smaller bus would come and pick me up around midday and take me to school.

One day, during one of my classes, one of the kids made fun of me. To this day of course I remember his name, and his face, and his ugly personality. We were sitting there listening to the teacher, I was in my wheelchair, with two braids and a very exposed scar. He started making fun of me being in a wheelchair at first. Then he made fun of my hair and with a flick of his pencil, moved one of my braids from behind me, to in front of me. I sat there with tears rolling down my cheeks.

Again, my heart aches as I write this and I can’t help but shed a tear. Perhaps that’s why I don’t remember much, because it was so difficult and kids can be very cruel. I didn’t ask for this to happen to me, but it did. This wasn’t fun. I remember being exhausted from having to wheel around. I had taken for granted running the halls going from class to class. Now, just sitting in a classroom was exhausting.

I didn’t finish that school year. At some point my parents and teachers decided it was too much for me. So I stopped going to school, focused on my recovery, and they decided to just let me join in the next year as soon as it started back up. I’m sure I was happy about that, not really knowing that what I was about to start battling was something even greater.

The fight begins…

The surgery took longer than expected and it took me a while to wake up. The doctors told my parents not to expect me to remember them once I did, due the effects of the anesthesia. My parents later told me that I opened my eyes and said, “Hi Mommy, Hi Daddy, I love you.”

I was placed in the ICU and the doctors prepared my parents for a long stay at the hospital. It was said that I would be there for at least 3 months. I wasn’t looking forward to that.

My Mom stayed with me every single day and night. She slept on two fold-out chairs because she was afraid she would pull out one of the tubes from my head or one of the needles from my arms if she slept in the bed with me. I use the term “sleep” loosely because let’s be honest, how could she get any rest on those chairs while worrying about her daughter. Sometimes, when I would close my eyes to try and sleep, she would gently place the back of her hand up to my face to make sure I was still breathing. I would order food mainly for her because otherwise she wouldn’t eat. My Dad would come visit me after work, stay until visiting hours were over, then drive home to sleep for a few hours, to then get up and head into work early just to get off early and go see me again. What my parents sacrificed is something I will never be able to repay them.

On one of the days, my dad had a Hershey kiss in his shirt pocket. When he took it out to eat it, I looked at it and said I wished I could eat one. He gave it to me (against my mother’s wishes) and with a smile, I made a comment about eating more. I hadn’t been able to eat just anything and when they did give me “non-hospital” food, it was in tiny portions. The next day, my Dad walked in with the biggest bag filled with those same exact Hershey kisses. They weren’t your regular kisses but the ones with the white chocolate stripes on them. I was so excited! You see, my Dad is smart, he’s a saver. Growing up, he didn’t buy us things we didn’t need unless it was our birthday or Christmas. Luckily, we were spoiled with love more than material items. So this bag of Hershey kisses meant a lot to me.

My parents would show me pictures of our house and our pets. I didn’t remember either. It was like Christmas for me, I had a cat and a dog! These pictures were taped on the side rail of my bed and I would stare at them as if hoping to remember. It felt odd not knowing my own home. I was feeling a little lost and definitely out of place.

Visitors were allowed in small doses and for short periods at a time. When my Aunt and 3 cousins went to visit me, one of them took me an apple in a little basket and told me it was to keep the doctors away. My sister came to visit and I remember having to cover the tubes coming out of my head with a towel because she would get queasy with those types of things. So I would lay on my side with this towel over my head and stay still so that nothing would show. She had brought grapes and started feeding them to me. I don’t remember what we talked about or if we talked at all. It was just nice to have my family there with me. I also have a cousin who, at the time, lived in the city. She visited me every day. She would play games with me, keep me company, wheel me around in the wheelchair (once that was allowed). My mom was afraid we would get in trouble because she would push me quickly down the hallway but she didn’t care. I truly believe she just wanted to make me laugh. She relieved my Mom so that she could go take a shower, nap or get something to eat. Of course my mom would shower as quickly as possible and come back to our area but I know she appreciated that someone in the family was with me during that time.

The nurses were truly fantastic. They would quietly come into my curtained off section to check up on me and bring me little snacks at 2 or 3 in the morning. I remember there was one specific nurse that brought me a few Cheetos in a dixie cup and would tell me what channel the good movies were on. I wasn’t in the clear yet, they still had me in the ICU and it was extremely hard to sleep. Looking back, I was very uncomfortable. I was out of my element and in a lot of pain. The doctors came in (what seemed like) every hour, they drew blood from me on a daily basis, there were children who would cry throughout the night… As much as they tried to make me feel comfortable, I just felt out of place. Everything had happened so quickly.

By the third day, I was already getting sick of all the doctors coming in with the residents to poke me and explain my story. You see, the girl that had passed with the same brain tumor as mine, was the daughter of a government official. So my story was followed and shared. They would come in the morning and then throughout the day. Even if I could fall asleep, they would wake me up constantly to check everything. Headaches were very much there, I couldn’t move because of the tubes, wasn’t sleeping, wasn’t eating and I couldn’t feel anything on my left side. The doctor later told me that a nerve had been damaged during the operation, leaving me with no feeling on that side.

They agreed to let me get up and walk but after about 5 steps, I thought I was going to throw up, I was exhausted. We turned around and they put me back in bed. An hour later, I was ready to get up and try again! This time, making it farther than before. The hardest part was not feeling the floor under my left foot. It felt odd because I had no strength and it was almost as if I had forgotten how to walk. On one of the days, they came to remove the tubes from my head. To this day, I remember the pulling, awkward sensation I felt as they did it.

Thinking about this part of my life now, gives me a rush of emotions. The love I felt and support I received from my parents is something that I can’t imagine having gone without. I was so young and fearless as we tend to be at that age, I knew no better. The little stories I don’t go into here, such as my mom holding my hand as the nurses washed my stitched up, hairless scalp; the tears I shed while looking at the pictures on the side rail; the way it effects you to hear someone right next to you crying all night… these are things that, to this day, are hard for me to relive. It’s said that once you can tell a story and not cry, you have overcome it. Well, I guess I’m still working on this one…

On the 6th day, they finally moved me out of the ICU and into a regular room. I was so happy that my Mom would get an actual pullout bed! I can only imagine how hard all of those nights were for her. Two cold, very hard fold-out chairs. Barely any room and to top it off, worrying about her baby girl falling asleep and not waking up. She’s never told me that was a fear but the back of the hand over my nose and mouth to feel for breathing pretty much gave it away. That room meant I was better though and that’s all that mattered.

The doctors had prepared my parents for a long stay there, but on the 7th day, I was discharged. The doctors asked me if I was ready to go home, did anything hurt? Did I have any concerns? Nope! I was more than ready. I was leaving and much earlier than anyone had anticipated because I had pushed myself and was going to continue to do so until things went back to normal, or at least I thought.

Now, I don’t remember being wheeled out, getting into the car or the ride home. Looking back, I had no idea the challenges that lied ahead. I do however, remember pulling into the driveway of a house I barely recognized, but knowing that I was home.

Here we go…..

What does a life without a brain tumor look like? I have no clue. I was blessed with a brain tumor at the age of 13. Or at least that’s when it was found after a year of headaches and doctors mistaking them for migraines. My name is Hazel and here is my story.

I don’t remember the years prior to the operation. My life basically starts the night my parents came back from seeing the doctor in regards to the CT Scan results. My dad walked into the dining room where my sister and I were doing our homework, my mom following closely behind. “What did they say” I asked my dad. He told me we would discuss it after dinner. That wasn’t what I wanted to hear especially since I could clearly see that something was wrong. So I told my dad I wanted to know now. Hesitantly, he responded, “They found something.” Now, I don’t remember the exact words that were said after that. What I do remember is my sister running upstairs to yell at God, my mom crying while trying to stay strong, my dad explaining and me, well, I didn’t feel much of anything.

The next few days were a rush of doctor’s appointments to let us know what would happen next, to let my parents know the risks. The Neurosurgeon, at the time, wanted to keep me that very night because a girl my age, with the same brain tumor had died just a week before finding mine. That wasn’t okay with my Dad who explained that we weren’t prepared to stay right then and there. The Neurosurgeon then told my Dad that if I passed that night, it would be on his shoulders. That Neurosurgeon was no longer on my case after that. The operation was scheduled and the night before, we all sat down on the floor of my bedroom to pray. I think my Dad spoke as my Mom and sister cried. I was confused, or at least I think I was. Everything happened so quickly.

No one tells you what to expect, you know? They try but everyone is hit differently. How can someone prepare you for something they, themselves, have no clue about. No one tells you that you will never be the same person again. That this may or may not make your life better. That you’ll have to be the strong one because your loved ones will need that more than you will. So, I had to be strong.

The next morning, on February 20th, my Mom, Dad and I got into the van to head into the city for the operation. My parents were very quiet. Looking back, I feel as though we were on our way to my funeral. I tried to make them laugh by telling them I wanted everything people get in the movies, flowers, a big teddy bear and balloons. Obviously I was joking around with them. They simply said “okay” as my Mom grabbed my hand and kissed it. I told them I was going to be okay and that I would see them in just a few hours! There was nothing to worry about. I never imagined that my life would never be the same again. Actually, I would never be the same again.

The next thing I remember is sitting, in a hospital gown, on a bed in an area which was split by curtains. My Dad was speaking with a doctor as my Mom sat in front of me hugging my legs which were dangling off the edge of the bed. Then my Dad returned with a nurse who asked me what flavor anesthesia I wanted. I remember there were three to choose from, I chose bubble gum to which my parents chuckled. Here’s where things changed for me. The nurse told my parents to say goodbye to me….Just in case I didn’t make it out. By now both of my parents were sitting on fold-out chairs as they wheeled the bed out into the middle of the aisle to take me to the operating room. My Mom stood up, put her arms around me and told me she loved me. My Dad didn’t get up, he sat in the chair and mouthed “I love you punky.” I had never seen my parents look old until now. God, what was this doing to my parents? What had I done.

The nurses had to pry my Mom off of me. At that point, I cried. For the first time throughout this whole ordeal, I cried like I had never cried before. I told my Mom and Dad that I would be out soon. In between the sobs, I told them I loved them and not to worry. Right, because having them tell you to say goodbye to your daughter wasn’t a big deal.

They wheeled me away and into a room where there were the three biggest, roundest lights I had ever seen. These lights were things I had only seen in movies. One of the doctors said a joke to which I said, “I’m not really in the laughing mood, I’m sorry.” He told me he was just trying to help and to start counting back from 10 because they were putting me under. The smell of bubble gum became overwhelming and sure enough, by 7, I was out.