Relay for Life Speech
Good evening. When I was first asked to give the survivor speech, I will admit I was pretty hesitant. I do not see myself as a survivor, but surviving. To me a survivor has overcome and beat their illnesses and I am fighting every day against illnesses that I will be the first to admit, I do not fully understand.
I found out I was sick on December 23, 2004 when I had a doctor look me in the eye and tell me that he did not know how I was standing there because I should be dead. That afternoon another doctor told me the words that would turn my world over. He told me it appeared I had Lhermitte-Dulchos Disease, which is a type of brain tumor. What bothered everyone was the fact that it appeared to be sitting on my brainstem. Being that I was a college student and this cool site called Wikipedia was out there I decided to look it up. Hmmm, bad idea. This was a growing tumor that not too much was known about and it sounded pretty scary. The doctors became pretty confident that it was Lhermitte-Dulchos Disease but were unwilling to operate on me as they were not comfortable with the risks involved.
Attention was soon turned to another part of my body as doctors were looking at my neck and believed there to be two large tumor type growths in my neck sitting where they could crush my windpipe. So here I am with this nasty thing in my head that they don’t want to touch but oh yeah it could kill me and these things in my neck that oh yeah they could kill me. They did biopsies on my neck that came back as we don’t think you have cancer but we want to monitor the situation. This went on for years with periodic tests and scans on my head and neck to see if these things were growing.
All of this came to a very sudden and drastic change in September 2009. I know many students do not like HPX 177, but in a way I am thankful for mine. My power walking class put me in Health Services and there they sent me to the hospital knowing there was not much they could do for me. I had a headache that put me on the floor which I dunno about the rest of you but I don’t think that’s supposed to happen! There the doctors had never heard of Lhermitte-Dulchos Disease and had believed I suffered a stroke. Turns out they were wrong about the stroke but this was enough to cause doctors to take another look at my condition. So I started seeing some different doctors and it would lead me to meeting the doctor who in Feburary 2010 would tell me he needed to open my head for brain surgery.
Brain surgery is an incredibly risky proposition. Obviously I had lived for years with this thing in my head. The problem was it had grown so appearantly one side was pressing on my brain with the other pressing on my skull. It never dawned me to ask about my brain stem but it must not of been pressing there because the doctors had previously told me if it touched there I would be dead. The plan was for the doctor to remove enough to ease the pressure in my head so I could maybe function like a normal human. The surgery was set for March 23, 2010.
After the surgery the doctor came to see me where he confirmed that yes what is in my head is indeed Lhermitte-Dulchos Disease. And due to the fact that he did not remove all of the tumor I needed to be aware of the fact that I would more than likely need another brain surgery. Might not be for 15 or 20 years but due to the growing nature of the tumor it would be more than likely. He also wanted to discuss another disease that could explain a lot of things. Those tumors in my neck, and the tumor type growths they had found in my mouth during the preoperation tests. This disease is called Cowden Disease and the main reason for why he thought I had it? Every person who has been a confirmed case of Lhermitte-Dulchos Disease has also had Cowden.
Cowden Disease is my body lacks genetic ability to fight the growth of tumors. This belief was enough to make the doctors looking at my neck to decide to operate. So in January 2011 I went back under the knife. The doctors had decided to take out my thyroid and the lumps in my neck as they seem to of attached to my thyroid. Well, the docs went in and operated and were a little surprised by what they found. It was described to me as removing a bag of marbles. The 2 or 3 large lumps they found turned out to be hundreds of tumors of various sizes all very densely packed. This added to the belief of I have Cowden Disease, and I don’t remember the reasoning for the hospital stopping short of the confirmation.
Very rarely are you able to find humor in these sorts of situations but I was able to find some here. I was in an interesting position. Doctors at UCONN Medical and Yale wanted me to undergo genetic testing as Cowden disease statistically occurs in 1 in 200,000 people and the number of confirmed cases of Lhermitte-Dulchos Disease is in the hundreds. It was a race so to speak as doctors at both hospitals tried to get appointments arranged with their genetics people. Finally one of them admitted it really didn’t matter which hospital arranged for the testing because due to my conditions and how I was being treated doctors at the other would receive a copy of the results.
As it turned out I was going to be tested at neither. Doctors at UCONN got me accepted into a research study being conducted by the Cleveland Clinic, a research hospital in Ohio. I am waiting for their doctors to answer a few questions. The obvious one if you followed my odd ramblings here is do I have Cowden Disease? The not so obvious question is do I have cancer? The answer to the first is more than likely. The answer to the second is as I understand it, probably. I just don’t know where.
That is why I shy away from declaring myself a survivor. Every day is a battle as my body fights these diseases that I do not fully understand.
It is the support of organizations like the American Cancer Society and the money raised through events like the Relay for Life that help provide for the research that provide hope that one day these diseases will be understood. If we are not able to beat them to get them to the point of they can be controlled and contained and will not be these monsters that have the ability to destroy lives.
Ladies and gentlemen the Relay for Life is a celebration of birthdays. We are here to celebrate the birthdays of those who have won their battles and of those who are still fighting. We are also here to celebrate the birthdays of those who have lost their battles. I have hope and faith that from events like tonight there will be many more birthdays celebrated. Thank you.