I did some genetic testing since this is such a rare diagnosis for my gender and my age. My Dr encouraged me to do it as it might change my follow-up care. And so I found out yesterday that my genetic tests were all normal. It's great news, but at the same time, it just doesn't make me feel much better. We have this running joke that if anyone is going to get the less than 1% things in life it will be me and once again it has. I have once again gotten something so extremely rare. Not only a rare type of cancer, but I am the wrong everything for this type of cancer. And I'm just weary. I'm tired physically and emotionally.
I should be able to take comfort in the fact that they got all of the tumor. But this type of cancer doesn't behave like other cancers and that worries me. It's resistant to chemotherapy so now we just wait and keep watch and cross our finger that it won't come back.
I've joined a couple of facebook support groups and from what they have told me, this cancer is never considered cured. In other cancers if it's been in remission for 5 years it's considered cured. But not this one. It's considered "no evidence of disease" because this cancer has come back up to 20 years after its been in remission. That is terrifying!
I wish I had something insightful to say. Like I've learned so much in these couple of weeks I've known I have cancer, but I'm still processing. I'm still in shock. I'm recovering from surgery in a new city where I don't know very many people. I'm still exhausted and trying to normalize life for my kids while still in temporary housing. We did finally find a house and will close escrow at the end of August. But in the meantime our lives are still upside down.
And I'm still just trying to survive.