Chordorma- Cancer, Disease or something in-between?

Dear Larry,

Let me first start off  by saying, I don't know 100% that you're a chordorma. I wont know until I've had surgery for a biopsy. Until then, you're a tumor in my head that appears to be, and most likely is a chordorma. Now, with that out of the way, lets talk about what you are... if you are in fact a chordorma.

First thing that came into my head when Dr. Kelmer called me and said those famous words " There's a tumor", my mind jumped on the 'Oh my god, I have cancer' train fairly quickly. Of course it did. When someone says tumor, that's anyone's first assumption. But you, Larry, as a chordorma... are a little.. well, let's say special. Dr. Metha and Dr. Jason probably explained it the best to me.

Chordoma isn't really cancer, in the typical sense of the word. It doesn't typically metastasize and spread to different parts of the body like, lets say, breast cancer. It doesn't typically attack the lymphatic system, doesn't go into your bones, it doesn't do any of that. Typically. I do say typically because there is always that 1% to 5% chance that it does, in fact, turn into something more. But, typically, it doesn't.

But what it does do, like cancer, is grow. It grows slowly, or at times, can grow at a quicker rate than normal. It fills the spaces from where it is growing and then starts pushing on things that it shouldn't be pushing on, and causing a whole whirl of damage if not treated not to mention could also be fatal.

Being a tumor that grows, but doesn't spread and also super resistant to radiation treatment, I think the medical world has a hard time truly classifying this type of tumor with any one name. I feel like this is why when you research chordorma you'll see websites classify it as cancer while others call it a disease. Which, I think, can be super scary and off-putting. .. Not saying this isn't scary and off-putting already, but.. there ya go.

I wanted to explain this, as this is what the Doctors told me, Larry. Because when people are researching on chordorma, there is a LOT of scary information out there. Tons. Big scary words like cancer, disease, life expectancy, surgery, reoccurring, so on. I think it is nice when you can just sit and be able to at least rationalize what is going on by telling yourself what you have.

It is also good to note that it only grows in three areas:
1.) The Clivus, which is a bone in your head near the brainstem.
2.) The tail bone ( a literal pain in the ass)
3.) The spine

Chordorma, as far as I've read and have been told, is cells left over from when the spine forms in a mothers womb. So, I've literally have had you, Larry, my entire life.

It is also good to note that this isn't something that has been passed down from family member to family member, skipping generations, or runs in the gene pool. This is just something that happens. It sucks, but.. there it is. At least now we have the medical professionals, some that only specialize in chordormas to lead those suffering with Larry's in the right direction.

But, there is another thing that I really don't like about you, Larry. You can grow back. I think that is the possibly the scariest thing. If you are, indeed, a chordorma, which I feel in my heart of hearts are, then you can grow back. I might have to deal with you for the rest of my life. Though I know it could be worse, I could have an aggressive type of cancer and be dead in two weeks, it is just a hard pill to swallow that this will be my struggle for the rest of my life.

But, that's only if I look at it that way. Honestly, I look at it this way:

To those who read my blog,
Thank you for reading it. Thank you for educating yourself through my babbles and rambles, and jokes.  Remember that no ache and pain is small enough to ignore. If it keeps happening, if the pain gets worse, or you don't feel right, please get checked out.

To those who read my blog and have a Chordorma, or know someone who does:
Please be positive. You have an entire group of people in this world who are going through the same thing you are, some may have it worse some may have it better, but the fear is still there. Please make sure you are educating yourself with the right information, and don't look at things that will dampen your spirits. You are strong, it is your body, and you have a say in the treatment you receive. NEVER be scared to ask for a second opinion. This is your body, damnit.

To everyone,
Please take care of yourself. "Skinny" doesn't mean "Healthy", that is not what I'm talking about. I mean take care of yourself. Go to the doctor, get yourself checked, check yourself, and if something doesn't feel right, get it checked.

Side note, I am not a medical professional. All this is what I have come across and the research I've done, so I may not be 100% correct. Always consult your doctor about everything. :)

And that's it!

Sincerely,
-Tara

P.S
You stink, Larry

P.S.S
No one likes you, Larry