It feels so good to sleep in my own bed! We have been very busy this past week. Last week we traveled to Florida and went to Disney for a day. We spent over 14 hours there between Animal Kingdom and Magic Kingdom. It was not like it was when I was a little kid and having all the characters walking around...now you have to stand in lines to see them! I did get my pic with Mickey and Minnie. From there we traveled to my cousins house to celebrate her wedding. It was so great to spend time with my family and celebrate love! Here's your shout out Mike! Although the night time was freezing the days were nice. I wish I was still there catching some sun.
On Tuesday I had another rescan. As you can figure, nothing has changed. The tumor is the same size...no growth no shrinking. I asked if I was going to have this the rest of my life and the answer was it is a slow growing tumor. I took that as a medical yes.
I still had a glimmer of hope because today (Thursday) I went and got a second opinion at Johns Hopkins. I thought for sure things would be different. I just wanted to hear, we have seen this before and this is what we did. I met with a neurosurgeon who was more interested in my syrinx. Because I have all of this pressure in my lower back and it has affected my nerves he said my option would be a risky surgery that would involve having a tube from my back and drain in the chest. I was like no thanks. He also told me not to expect to "hit a home run" with results and walking without assistance again. I told him I expect a grand slam. Guess that's why I don't play baseball. So he was going to meet with some pediatric oncologists to discuss my images and get back in contact with me.
S t o r y o f m y l i f e.
It's so easy to get sucked inside this depressing chapter of my life. For some reason I just can't. I have such a great support team. Things could be so much worse. "Life altering, not life defining." I need to make the most of my time while I still have it. I mean really we all should be. This is the last thing I expected to happen to me, but when I look back over the past year, there has been so many positives. I feel so humble. I began to realize what really matters in life, family, friends, losing my attitude (well most of it), and not taking every day for granted. I even survived hunting season this year without much complaints. I guess I realized that Jon has given up so much for me why should I give him such a hard time about doing something he loves. I know what it's like to not be able to do things you once loved and I wouldn't wish that on anyone, especially my husband.
In case I don't update before Christmas, I wish you all a very Merry Christmas and a Happy New Year. New year...new beginnings. Thank you for the continued thoughts and prayers.
"When you figure out love is all that matters after all, it sure makes everything feel so small."