A NYC Visit

So last week, I wrote that the doctors here at Cincinnati Children's Hospital wanted to amputate my arm. Between the desmoid and the new sarcoma they didn't want to risk a recurrence and thought this was my best chance at living tumor-free. I went so far as to schedule the surgery, and then moved the surgery to a closer date.

We saw a doctor in Columbus to get a second opinion. At first his opinion was that they could save the arm. After talking to him, he changed his mind and said he would also amputate. He said if the desmoid or secondary sarcoma ever came back, he would be kicking himself for not amputating in the first place. I was in pure panic mode. He said my lymph nodes looked questionable too.


I kept crying. I kept getting more depressed. We took a flight out to NYC to see my doctor at MSKCC. On Tuesday, he gave us his opinion and with that he gave me hope. The desmoid isn't going to kill me. The secondary sarcoma could. We need to focus on the secondary sarcoma and stop thinking about the desmoid. It is well controlled with the sorafenib. We should try to save my arm. I'm too young and this thing is well contained in my arm right now. Regardless of the surgery or amputation, there could still be microscopic cells remaining. With good margins on a local surgery, you have a good chance at ridding yourself of this. As good of a chance as I would have with the amputation. Amputation is always an option down the road.

Then the whirlwind tour began. We changed our flight and found a new hotel. We sequestered new clothes and washed some in the sink. We saw a plastic surgeon and a orthopedic surgeon. We changed hotels again and lugged clothes around in a broken bag. The confidence from the doctors was amazing. They are so certain this is the right choice. They are certain they can save my arm and get rid of the cancer. 

I'm excited that we can keep my arm. I'm nervous that this secondary thing is growing so fast in me. I hate the secondary cancer. I hate the desmoid. I wish I had never had radiation in the first place. I wish I was just normal. I want to be better already so we can move on with our lives. This is going to be the first step in healing me. I'm going to be better after this and teach people how to deal with situations where you feel like you have no control. I want to teach people how to cope and how to be strong. I feel like I have a renewed purpose in life. I'm going to heal and teach.