Post Surgery Update

I'm putting back up the blog since I think a lot of people have questions. I just ask that if you are someone who shouldn't have the blog (ie my co-worker) that you please respect my privacy, please. I want this to be a place where I can share openly with people. Where friends and family can get an update from me. Sometimes I expose more of me that I would at work in my writings. It's hard for me to draw a nice line between personal and professional.

Here are some questions and answers I've been asked or things I want to tell.

What happened?
I had radiation 3 years ago. The doctors said it would decrease my odds of the desmoid coming back. Instead, my cell mutated from radiation and I got a high grade sarcoma.

You had surgery. You're done now right?
Kinda. They took out the sarcoma but left in the desmoid. They did save my arm. I'm scared. The sarcoma was fast growing and potentially deadly. I'm glad it's out but in order to be confident that it's gone you need "good margins" (it's just what it sounds like). My margins were good but the question the doctors are fighting about is - could it have been better?

What does that mean?
Well, the tumor was on the bone. So they removed all of the tumor and then scraped the top layer of the bone clean. It can't grow into the bone but it may or may not be too close to call. One doctor says it's fine and that was a good margin. Another says it's too close. The conflicting opinions make me dizzy and sick to my stomach.

So what about chemo?
Oh there was good news. The sorafenib worked on the desmoid. Killed it. Surgery could aggravate the desmoid and make it grow (or do nothing). The sarcoma is gone to the eye but we might need to do some maintenance to kill the microscopic cells, if there are any. Chemo would only be a few months but it would be rough.

That's about all I'm ready to share. It really sucks. I ask you pray for me. Pray that God has a plan and that I have faith to believe in him. I believe in God and believe that you need to trust him. It's the easiest thing to do when everything is going your way. It's much harder when you don't like what's happening.