A year ago Saturday was the day that this whole shebang began. My doctor called on a Friday evening before he left town for a week because he didn't want me to have to wait and wonder while he was gone. He spent at least 30 minutes on the phone with me explaining what a 'carotid body tumor' was..... and doing so by looking it up in Google and Wikipedia himself.
Within a month I'd discovered that people who were diagnosed at a young age often had tumors as a result of a genetic mutation. If you've read here long at all, you know the rest: Genetic mutation = predisposition for growing tumors. Higher likelihood of recurrence, malignancy, or metastasis. For a year I've wanted to know 1) WHY did this happen? 2) Is it going to happen again? 3) Am I going to get cancer? And to help answer all those questions I needed to know do I have a genetic mutation??
One year and two days later, I have an answer to that question.
NO. No, I don't have a genetic mutation. I am not a mutant.
This is good news... Really good news.
And I am shocked. I mean... Knock me over with a feather, this was not what I anticipated at all, shocked.
As soon as I was in contact with the NIH we were talking genetic mutations. It felt like I just fit the profile, but maybe that's just how I read it. The location of the tumor plus my age plus finding out about the nodule on the other side. It just made sense. Plus, I have this dismal family history of cancer, cancer, and more cancer and surely that ties in with it all somehow, right? From the beginning, Karen didn't talk to me so much in terms of whether or not I had a mutation, but which one.
Today I got an email from Karen. One line. "Hi Val. You are negative for any mutations. Karen"
This is good news. It's great news. It is. But I have no idea how to process it. I don't know what to think. I've gone so long trying to figure out which one I had and what that meant that it's actually a lot to process to find out that I DON'T have a mutation.
It also leaves me with a lot of questions. Like: Why did this happen in the first place? And... Does this mean that I WON'T get more tumors or is there still a chance that I will? And.... How do I need to be screened?
It answers a big question, but it doesn't conclusively answer all of the questions.
The great news is that hopefully, hopefully this means that the girls have nothing to worry about. They won't need to be tested and screened. They won't ever have to deal with these tumors or questions or worries or wonders. THAT is fantastic.
I don't know what my deal is. I should be all smiles and excited out of my mind. Instead I just feel.... confused. I'm hoping that as time goes by, the happy will come. I'm sure it will.
Sinking into the happy or not, Andrew brought me flowers today to celebrate. We're going out to eat. I'm going for a walk/jog, getting into the sunshine, and maybe having a squirt gun fight with my girls.
It's been a long, hard year. But there's good news today.
