All through high school (and even part of middle school) I had suffered from headaches. They had been getting increasingly worse. I thought they were induced by hunger, so I made sure to carry around candies to help if I got too hungry. I also had an unquenchable thirst, so sometime freshman year I started to go to the doctor. I had my blood tested for things like diabetes, but nothing came back abnormal.
Meanwhile, we moved and I had changed doctors as a result. I kept having these headaches and so I kept going to the doctor to try and find out what was wrong. She had my blood tested a few times and tried telling me different things like seeing a dietitian to talk about eating better. I even gave up pop at one point, but the headaches increased and I felt like I was going through withdrawal, only now I know why it didn't help. When that didn't work she just tried to tell me that it was normal teenage stress headaches and gave me some exercises/stretches to do to relax my neck and head muscles. At that point it was the beginning of my senior year and I was taking aspirin at least once a day, which is huge for me because I never take drugs or medicine of any kind unless absolutely needed. I was also having dizzy spells where I would temporarily (a few seconds) lose vision and have to hold onto the wall or crouch on the ground to avoid falling. For some inexplicable reason I also couldn't walk straight, but walked toward the right always.
During that year I was taking a class at my high school for people that wanted to work in the medical profession called Health Sciences Technology. The first semester we spent learning about the different diseases and body systems. The second semester we were placed in the hospitals, vet offices, or childcare places around town to get experience. In December we had been learning about the brain. I had learn some of it in Psychology the previous year, but wasn't interested until now. Our teacher talked about what the different parts do and I took particular interest in the cerebellum. While thinking about it, I even casually said to my mom, "What if there's something wrong with my brain, like I have a tumour or something?" I honestly didn't think much of it.
About a month passed and my dad took me up to Crystal Mountain to go skiing. We hadn't been up there in years and we hadn't really been skiing at all really. I'm the only one in the family that ever wanted to go. We were going to go up overnight. We skied for a while when we got there, then were going to ski the next day. I woke up with a terrible headache. My dad still skied for a while before we went home because I couldn't take the headache. That was about two weeks before I found out the cause of my headaches.
February 5, 2008 is a date that I will always remember. I had started my first clinicals for my Health Sciences class the day before in the hospital at the Pharmacy. That day I went in earlier for a much different reason. I had been having a hard time wanting to sleep all the time because of the pain of my headaches and my grades were even slipping as a result. That morning I woke up screaming with a headache. My dad came in my room and I tried to ask for him to get me aspirin because of my horrible headache. He then rushed me to the hospital. It was not until later that I understood why. He said that I was speaking in gibberish and he thought I may have had a stroke or something. My mom was in the shower, so he just rushed me there and then she came to meet us. I really only remember parts of that morning.
I remember waking up some time that afternoon. Both of my parents were there (my older sister and her husband were coming that night and my oldest sister and her husband were driving through the night to get there and arrived in the morning) and they delivered me the news. The doctors had run a CT scan and found a brain tumour. It was located in my cerebellum and they believed it to be a Pilocytic Astrocytoma. It also appeared to be about the size of a golf ball. They also performed a full body MRI to make sure that there were no other tumours. That was the only one. Most people probably would expect someone to fall apart upon hearing that they have a brain tumour, but I didn't. I'm not sure if it was all of the pain medication, the fact that I had already predicted this, relief of finding out the cause of my pain, or denial until the surgery when it was gone. No matter what it was I was calm throughout it. My mom also found out what blood type I was because I wanted to know. I was B positive, which I took as a message to 'be positive' throughout this ordeal.
The next day a Priest came in to perform the Anointing of the Sick on me and give my family ashes for Ash Wednesday. (Yes, I went in the hospital on Mardi Gras and had brain surgery on Ash Wednesday.) They then wheeled me into surgery some time after that. I remember going to another room then my family all saying goodbye to me before I went in to surgery. I then went to the OR where they put the sleeping gas mask on my face and I drifted off.
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| Taking me to surgery |
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| My sisters and me with our Ashes before I went to surgery |
I don't remember waking up but I do remember bits and pieces of the next week that I spent in the hospital. I do remember my parents telling me that they thought they got it all. They were also almost positive that it was a benign Pilocytic Astrocytoma but had to send it to a pathologist to test. They also sent it to my dad's cousin who is a pathologist and they both confirmed that's what it is. It is also a type of tumour that grows slowly and I could have had it my whole life but it wasn't a problem until recently. The took another MRI and it looked like it was all clear. I had follow up MRIs every few months they have all been clear so they have gotten longer times in between them. I remember parts of my stay in the hospital, the visits from friends and family, gifts, and my parents and sisters spending long nights at the hospital with me so I was never alone. They don't know how much I appreciate that. (I also loved the gummy bears every time that I had to take gross medicine.)
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| Before and After surgery. My ventricle was getting cut off and causing much of the pain |
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| Part of my awesome neurosurgeons at Mott Children's Hospital |
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| Not exactly what my parents wanted for our first family picture with all of us |
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| My sisters and me after surgery |
After my week in the hospital, I was still out of school for a few more weeks. (well 2 and a break) My oldest sister and her husband stayed with us for a while because she works from home and could be anywhere and my brother-in-law had just gotten back from Iraq and was on leave. They helped take care of me with my parents so that they could alternate working and someone being home with me. At least for the first week or so. I had to have someone help me with stairs and just walking in general since the cerebellum controls balance. Another thing was that I couldn't properly wash my hair until my stitches came out, but that didn't really bother me because for the first time in a long time I wasn't having the headaches. Sure I still had pain from the surgery, but it was a fraction of the pain that I had on a daily basis before.
When I got back to school, I ended up dropping some classes and taking AP biology pass/fail. I only needed one more class to graduate, so I was extremely lucky to be able to do that. I was also taking my Health Sciences class, of course. It was hard at times because my second day back on clinicals I was at the Pharmacy again and she talked about making Chemotherapy drugs and took us through that area of the hospital. My neurosurgeon, Dr. Garton, had just talked to my parents about the possibility of chemotherapy if it ever came back. So far it hasn't, though, and it is looking like it won't. Over the next few months, I had physical therapy at Mott Children's Hospital. We worked on my balance and it was a lot of fun. At home I also worked on my Wii-habilitation by playing games on the Wii to help with balance, including Wii fit.
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| My first follow-up with Dr. Garton, my Neurosurgeon. He is testing me on the finger-nose test. |
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| Dr. Garton and me. The pigtails made it easier for him to see my scar. |
Life has been really good since all of this happened. All of the MRIs have come back clear, I did well in physical therapy, and I have not had a headache as bad as those since February 5, 2008. My doctors actually told me that they had performed this surgery many times and I was healing the fastest. I still think that sometimes I don't realize the magnitude of having a brain tumour because I was so fortunate and I sometimes miss the realisation that I had one. Never once in the process did I think I wouldn't make it out of surgery, but again that may have been the drugs talking. The scars are a constant reminder of my surgery, though. I have three scars. I'm not sure what one of them is, but one is a divot from the drainage tube in my brain and the other is a five inch scar along the back of my neck where the incision was. I was extremely lucky to be able to keep my hair since they just shaved parts of it where they needed too. I was growing mine out to donate again, though so they probably would have kept it. (I'm growing it again to donate for a third time)
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| CCG's Army at Path to Progress |
Also, for brain tumour awareness this week please wear gray to support, add a twibbon to your facebook or twitter profile, or just talk to people about it. I will also be posting facts about brain tumours on twitter, facebook, and my other blog posts. The amount of research funding on brain tumours is ridiculously low and we need help to raise awareness to get more funding and find cures.
2 comments:
Great post. I love you CCG!
You did a great job in relating your story and the nightmare you and your family went through 3 years ago. Such a HAPPY ENDING.
luv ya--CAITLIN---GRAM ROTH
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