Sep 28, 2012 - 2:05 am
Wish I had better news to write y'all. I am out of the hospital which is one good thing, but am still in so much pain. That was without a doubt the toughest surgery I have ever had. I've never been in so much pain in my life. Things are getting easier day by day though. I just have to remember to be patient. The unfortunate news is that I saw my radiation oncologist today. I had a ct scan done for my preop so that my neuro surgeons could plan the surgery and my radiation oncologist looked at it today. I was told that I have 7 tumors in both of my lungs and there aren't really any treatment options. The only option is to do chemotherapy, but since my tumor has never responded to chemo, its a less than 5% chance that it will do anything.
I'm trying to decide whether I should do anything or just live out the rest of my time enjoying my friends and family and enjoying life. Quality of life has always been so important to me. I don't know if I can go through losing my hair again because I just felt so ugly and so not 'me' in addition to being so sick and feeling terrible. Back in March I was told that my disease had become terminal, but I refused to accept that and decided that there was no way I was going to lose this fight. Now that it has spread to my lungs, I am faced with the reality that this really is terminal. I feel so incredibly hopeless. I don't know how I'm supposed to come to terms with the fact that I'm 21 and I'm dying and there is nothing I can do about it. I know people say miracles happen all the time and I am one of those believers, but at the end of the day I have to be honest with myself and accept the fact that sometimes there isn't always a happy ending. I have quite a bit of time to decide about chemo since my spine has to be completely healed before I begin any kind of treatments.
I just don't really know how you go on living your life knowing that you're going to die. This is so incredibly difficult. I hate the hurt I am causing my friends and family. I hate that every time I feel like things are starting to turn around, something bad happens. I wish I understood God's master plan and why all of this is happening. I am just so devastated. Please continue to pray because I know that regardless of treatments, prayer is one thing that always works. I will continue to keep you ladies in my thoughts and prayers. Thanks for all of your kindness and support.