NF2 second tumor

Since it had been seven year from my firs tumor to the second tumor, I decided to take to both a radiologist and surgeons. I took my whole family with me to the radiologist, Mom, Dad, and older sister. My support system post divorce. The radiology treatment had advanced in seven years. They use much lower levels and take imaging of you while on the table receiving treatment and make adjustments on the spot. It sounded really cool and the statics had changed in the loss of hearing and facial nerve damaged. Both for the better.

My sister was thrilled with the meeting. She really liked what the doctor had to say and the better stats. Mom and Dad seemed open to the idea of radiation. My Dad four year earlier had be diagnosed with throat cancer. He had been given the option for surgery or radiation combined with chemo. At first my Dad was going to have surgery. They put in a peg stomach tube, so that he could be fed after the surgery. He had complication from that and decided to go with the radiation/chemo combination. So, he had seen first hand as to how well radiation could work. By the way Dad has been cancer free for 5 years now.

Although the radiation treatments had a advanced and the stats were better, radiation still didn't set well with me. It just bothers me that they would kill the tumor and just leave it in there. Not that I need the extra room in the canal for something, or that anyone would know it was there by looking at me. I just didn't want to carry around a dead tumor in my head for the rest of my life. It's like killing and spider and just leaving it were it was. Seems wrong to me.

The effects of radiation are slow, so you don't know how the loss of the balance is totally going to effect you for a long while. I was already having dizzy smells while sitting still. They would come on with no warning and I would not know how long they were going to last. For me, I want to know up front just how bad it is going to be. Waiting to see what the worst is going to be is just not something that I was cut out to do.

We met with the surgeons as well. They talked about how surgery would be different this time as the tumor is smaller and there wasn't damage to my hearing nerve yet, over the last seven years that had a lot more practice at the surgery. Their approach would be the same as last time coming in from above. They were willing to do the surgery but it was up to me and what I wanted to do about it. They gave me until January to make decision, thinking that I could have a stress free holiday season this way.

I really didn't need until January, I had my mind made up long before then. Surgery was the only option I thought I could live with. Even with the not so good out come of my first surgery.

I had asked my family to be apart of the process this time around and included them in the doctors' appointment. They willing did so. When it came time for the decision. I made that on my own. After all it was my body we are dealing with and ultimately I will be the one dealing with any all complication from either procedure. This was hard for my Sister to take. She thought that since I asked them to be part of appointments that she would also get a say in the choice of procedures. Being one that is not fond of surgery or cutting on the body in general, she thought radiation was the way to go. And if I didn't like the answers I got here in KC then I should go to the Mayo clinic or some place like that with more experts.

They day before surgery, she calls me on my way to work. Tells me that I don't have to have the surgery. That she knows I like my surgeons, and have faith in them, but my last surgery was a best case situation and it could end up being much worse this time. I start crying, and I yell at my first sister for the first time in my life (that I remember). I try to explain to her what I can not explain to myself. The thought of radiation makes me want to die. Just kill me now if that is my only option. I am scared to death of the surgery but I am willing to go through it. I think this time will be different. In my heart of hearts I know it will be. Nothing is the same twice. I tell her What I really need is for her to tell me its going to be ok and we will handle what every comes after together. She tells me she can't do that, because she doesn't know everything will be ok and she won't lie to me. She says that she knows I want to continue to live on my own after surgery but I may lose my right to make that decision depending how the surgery turns out. I tell her I have arrived at work and need to go.

I was mad. All I could do was cry. How could she not support my decision? I understand better than most about being scared of surgery. This would be my third surgery in my life. I have reason not to want to have brain surgery after the first time and the facial weakness and lack of movement. I know she had to be scared some too. I'm her baby sister and she would fight for me against the biggest, meanest bully on the bus. She always had my back but not this time.

I received a call from Mom asking me to come to a family diner that night. My sister had called my parents and told them had a lively conversation that morning and she was not convinced that I really wanted have the surgery.