It has taken me several days to sit and think about how I plan to write this portion of my blog because after my last trip to Tampa General Hospital it is not great news once again. As of my last MRI that I had done my tumor has grown so much that it has now hit the optic chiasm and is now running down the other visual track toward the back of the brain. It has not infiltrated the right optic nerve yet thank goodness.
Bad news: I have developed a post op infection either from when they took out the spinal fluid drain out of the side of my eye and somehow something got in there. Or because when they did my surgery they cut out a portion of my skull to go in OVER the top of the optic nerve to be able to biopsy the tumor well either the hardware or the bone has infection in it. So, if the IV antibiotics that I am on for 6 weeks do not wipe out the infection. I will be having surgery done again for the third time on my eye and they may be taking the bone out of my head and leaving it out for 6 months to allow for the infection to clear and then in 6 months put it back in again and surgery again for the fourth time. But it all depends on if the infection is so bad. Sometimes you can leave that piece of bone in and still get rid of the infection. Depends on how bad it is inside.
So everyday I spend close to 6 hours hooked up to IV antibiotics to try and get healthy so that way I dont have to have these other surgeries. Honestly I hope it works because that was the worst surgery I had ever gone through and do not wish it upon anyone. Plus, I could use a break! My life currently feels like its falling apart and all I can do is stand there and watch it. Which leads me to my next bit of bad news... I found out that I have a real good chance of going blind not just worsening vision but all the way. Like never get to see your daughter graduate high school or get married kind of blind. Like not be able to wipe your own butt kind of blind. And if Shawn read this he would be having a cow with me right now.
They dont know when because of the fact that I am such an odd case. I am an adult with a childhood disease. So they are grasping at straws. They hope that whenever I can start radiation that it would stop the growing and prolong the vision loss, but for me it is hard to be optimistic anymore because I take one step forward and end up 6 steps behind and cant catch up.
Emotionally how am I handling this? Well, when I first found out I cried and cried and cried because the thought of not getting to see Lillie's kids or grow up or ever see Mickey and Minnie are hard for me to accept. I wanted to be a great mother to her but now I feel that I have failed her before her life has even began. And I know that she will grow up thinking I ruined her life that somehow she will resent me. I would like to see my husband get old and gray and unfortunately realistically that may not be an option for me. So, I am angry about everything. I HATE the fact that this is happening to me. I HATE the fact I cant change it, and I HATE the fact that no one really understands what I am going through.
Shawn is being optimistic and hoping things don't turn out horrible which is what a great spouse would do but after the last year I have had between my Uncle and my Grams and my fibriod tumor removed and now a tumor on the optic nerve. Its like whats next? Am I going to fall down in some sink hole or something? I'm just curious if things are ever going to get better???
