Me and Jeff, one of my best friends who is a Non-Hodgkin's Lymphoma Survivor
Sometimes I think that I might be running from the truth. I want to believe that I will be the one to beat the odds. I tell myself, "Incurable is not the same thing as terminal." I don't believe in asking my doctors about how long I'll live. If I did ask them, all they could do is guess and I can guess all by myself. Some people say that when you get cancer, you should go out and find out everything there is to know about your disease.
I did that when I was diagnosed with Lupus. I wanted to know about everything that could possibly result from having it. I gave stacks of papers to my mother, thinking that she'd be as eager to read them as I was. When it became apparent that she wasn't reading them, I was really disappointed. It took me years to understand that she really couldn't handle what those papers might say.
When the questions about what this was in my chest really began, I had that same inquisitive feelings as before. However, I quickly learned that this was going to be a lot different from having a very mild case of a potentially deadly auto-immune disease. As they narrowed down things down, the diagnoses went from serious to very serious to grave. None of the doctors would give me any reason to be optimistic. At the very least, there was a mass in my chest that would require neurosurgeons and cardiologists to remove in a series of complicated surgeries. Hopefully it would be benign and it would remain that way until they could get it out.
Well, it turns out that it wasn't benign and they weren't able to remove it all. So, now I'm living with cancer. But, as is so often the case with me, it couldn't just be some run of the mill sort of cancer. My tumor happens to be a very rare one. Even most of the people in the medical profession have never heard of it.
There are some advantages to having a rare cancer. If you have breast cancer, you're sure to know of someone who also had it but didn't fare very well, despite the fact that there are lots of people who have survived it. My mother is included in that number. She just made her five years in remission mark which means that she's considered "cured". To get back to the point, people tend to focus on and remember the horribly sad stories much more than the happy ones. With chondrosarcoma, no one is likely to say that they know someone who died of that. However, there are also some disadvantages to having a rare disease. The doctors don't really have a lot of data to fall back on. Unless your doctor works at one of the big cancer research centers, you're likely to be the only patient with chondrosarcoma that they'll ever see in their entire career. So, they can't really tell you how things are likely to go in your case.
In the end, all they can do is try some things and see what happens. I'm trying to learn how to be happy with that. I'm not sure I want to know how likely it is that something will go wrong when it comes to a procedure that I must have done regardless of the risks. I'm not sure whether preparing to go into a procedure with little information is really worse than going into it knowing that it has a very high probability of having undesirable consequences. I mean, if what you read is only going to increase your stress levels, then won't that negatively affect your outcome too?