Some Basic Info

I was first diagnosed with malignant brain tumors on 11-20-08 and I finished treatment for those on 4-13-09. I was recently diagnosed with a recurrence on 12-08-09. I set up this blog so people could follow along with my progress and keep up with what is going on in my treatment. I also wanted to put up information from my first go round so people could learn a little bit about what happened to me before.
The blog is set up with the newest posts first. Sometimes I will post stories from my first experience, in which casse it will be slightly out of order, but the titles will let you know. If you want to look at older posts, which may provide a better idea of the whole picture, use the "Blog Archive" tool on the right side of the page to browse them. The titles of the posts should be pretty self-explanatory. If you don't really know that much about me, or what happened, you should check out these two posts first: this one about what's happening now, and this one about my first experience.
Feel free to leave comments, it should be open to everyone now. Thanks for visiting, I hope this little blurb clears up some confusion, and I hope you like the blog.

Thursday, December 31, 2009

How It All Started

I wanted to create a post to describe my experience with cancer the first time because I don't think a lot of people know exactly what happened and knowing about the first time will help with understanding the second time.

It all started at the end of October of 2008. Towards the end of the month, I started getting really thirsty all the time. Because of this, I drank a lot, and because I drank a lot, I had to pee a lot. I didn't think too much of it, I just made sure I had water with me all the time and used the bathroom a lot.
The second symptom I started having was headaches. I had had a week of really mild headaches earlier in October, but just took advil for a week and didn't think anything of it. But in early November I started having really severe headaches. They started off not that severe, but by the time I went to the hospital on November 20th they were incredibly bad. Around the time that the headaches started, I started having vision problems too. It didn't start off too bad, my vision wasn't really blurry, it was just hard to focus and hard to read.
After having the headaches for a while, and them getting worse along with my vision, I visited the doctor's. This was around the 12th of November and by this point the headaches were bad enough that my parents and I thought I had a sinus infection or migraines. We also thought migraines because my eyes had started to hurt too. We thought maybe the vision problems were just because of the headaches though, and we had no idea why I was so thirsty. Also, by this time the fact that I was so thirsty was affecting what I was eating. I had trouble eating anything that was dry or salty, and my diet consisted of mostly yogurt, soup, and fruit. Additionally, I was waking up about every 2 hours during the night to pee and drink.
The doctor was pretty confused too, he actually ruled out the possibility of a brain tumor pretty early on. He ended up prescribing an antibiotic for a sinus infection, event though I didn't have all of the symptoms of one, because he didn't know what else it could be. He also scheduled a follow up with a neurologist and an MRI for sometime later in November.
After that, the headaches just started getting worse and it got even harder to see. I was having a lot of trouble in school because of the vision problems, and also because of the headaches. I had to leave early a few days because of the headaches. This was all exacerbated by the fact that I got up every 2 hours during the night.
Wednesday the 19th was the last day that I went to school before I was diagnosed. It was a colloquium, and I didn't feel good and had a bunch of advil to take throughout the day. After school I went with some friends to Panera because I remember that soup was about the only thing I could eat. I was there for a while and probably had about 5 cups of iced tea. My dad picked me up afterwards and in the car I was looking at street signs to test my vision. My dad has really poor eyesight and he was able to read the signs from further away then me. He also looked in my eyes and noticed that they were really dilated.
The next day my headaches and vision were worse and my mom wanted to take me to the ER. She had wanted to before, but I had convinced her that we shouldn't go, lest we take up room needed for someone who was actually sick. I convinced her again, but after we called my dad and told him he told us that we needed to go, so we went.
In the emergency room we met with a doctor who we explained all the symptoms to: the headaches, the thirst, and the vision problems. I then had to do a CT scan of my brain, which is about a 30 second scan. After waiting for a while, he came back and told us that I had 2 tumors in my brain, and that based on where they were, they were most likely germinoma tumors. This explained all the symptoms I was having. The headaches and vision problems were because one of the tumors was blocking the passage of fluid through and around the brain, the headaches were from the buildup of pressure that that caused. The vision problems and eye pain were also because of the pressure, the fluid was pushing up against my eyes, inflaming the optic nerves. The fact that my pupils were dilated is because of the pressure. (After an eye exam, they determined that I had torsional double vision: the image in one eye was the same as in the other, except twisted.) The reason I was so thirsty was because one of the tumors had destroyed my pituitary gland. The pituitary gland has a lot of functions, one of which is producing antidiuretic hormone (ADH) that regulates the amount of water in your body. Because I was not producing this, my body did not retain water, meaning I would have had to pee about every hour regardless of what I drank. The fact that I was so thirsty and was drinking so much was my body preventing me from dehydrating. The name for a deficiency of ADH is Diabetes Insipidus. (This is a website with a more good information on that.)
After getting the CT scan and the results, we met with a bunch more doctors who told us that there were two tumors, one on the pituitary glad, and one on the pineal gland, and based on their locations, they looked like germinoma tumors. They also said that they wanted to do a surgery to relieve the pressure from the fluid buildup and to get a biopsy, removing them would be too risky because of the location. So, I stayed overnight and the next morning, November 21st, I had brain surgery for the first time.

11 comments:

dvplvp said...

Hey Miles...great posts! you'll make a great doctor if you ever want to step foot in a hospital after all of this is over! It's great to see inside of that brain of yours. Thanks for sharing the info it helps alot! stay strong and keep us updated on your progress and if you need anything. XO Laura VP

ImARunnER said...

Hey Miles,
You don't know who I am....or maybe you do.....but my mum (Dot- she says ask your mum about the elbows) plays soccer on Sunday mornings with your mum. My mum told me that you had another brain tumor and she showed me the link to this website. I want to send my well wishes and I hope that you get well. I also wanted to say that even though we may not have met I am supporting you one hundred percent. I think that is was a marvolous idea to start a blog about your experiences, not that it is a good thing you have to go through them.
I'm going to tell you a little about myself just so I won't seem like a complete stranger. I am also a Junior in high school. I attend Whitney Young and run Cross Country and Track. I was a soccer player for eleven years before I got bribed into trying track :D. I am an assistant referee on Sundays (which is my only free day of the week and is normally filled with homework). When I'm older I either want to become a movie director or study Psychology. Below is a link to a website that never fails to make me laugh. It is called mylifeisaverage where people post there 'average' stories about their life. They are usually pretty funny and have cheered me up when I've had a bad day.
From,
Maisie

nica lalli said...

Hey Miles!!
Welcome to the blogosphere!! I will check in here for updates...it is great to be able to read about what is going on. I will come to Chicago as soon as I can. Good luck with the 2nd day of the stem cell proceedure.
XOXO Nica
ps I can knit - so call me if you need help.

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