Wednesday, May 30, 2012

Advocating an advocate

So, as I've been going through the process of trying to remember all of the stuff that was going on a year ago, there is something that really bothers me. This guy, Dr. Luiz Cesar - neurosurgeon at Hillcrest in Waco, actually told Stanton that he recommended not getting me any kind of treatment. He actually recommended not doing anything. He said since I was so young I would probably survive up to 2 years and that the treatments would probably not be worth it as far as the cost on my quality of life and the amount of time that I might gain. Of course I had no idea of this conversation until much, much later. But, it still irks me that someone that from what I can tell simply looked on Wikipedia to research the disease, had the nerve to say something so painful on a subject on which he clearly has no expertise. I have grieved several times for the pain that this one man caused my husband, family, and friends. I still hold a grudge toward this man. And if I ever see him again I'll probably kick him in the shins through a teary eyed face.

Fortunately for me, Team BASG is a group of fighters and immediately just blew him off. They started looking for alternatives. And through a crazy turn of events we ended up just where we needed to be, by the Grace of God.

But like I said this has been bothering me for the past few days and I need to get some things off my chest. If you find yourself in a medical situation and you don't care for the prognosis please go get a second opinion. Although I had a team of people making sure I got the best care, it has hit me just over the past couple of days that many people aren't so lucky. They would simply take what Dr. Cesar said and go with it. And if I was by myself, I probably would have done the same thing, especially in my drug induced stupor. So, just remember that if you find yourself in a medically precarious position, there's always something to try. So don't just take some guy's word for it, no matter what letters come after his name.

Secondly, only God knows when you will die. You could die in a car wreck today or you could live to be 120. There is no way for doctors or anyone else to know when your gonna go. So you might as well live your life. Praying for God's grace to sustain you through whatever trials you face. Don't let yourself get into a headspace of doubt and despair. Believe that the Creator of the universe will see you through. Have faith in His love you. And see the mercy He shows everyday by giving you another day to live for Him on this earth. He puts us through trials on this earth so that in our sin we will repent and draw close to Him. I have truly felt this to be a time of great blessing in my life. And as cheesy as it sounds, I hope one day you get the chance to live like you were dying. It really does change your perspective. You realize that the alternative to living is being with the almighty God and praising Him constantly. (If you don't have the security of knowing this, please contact me so that I can share with you what an amazing God we have.) and then you feel like the one who has the easy job. I mean essentially this disease has given me more time to spend with friends and family. I get to see my kids grow up. I get to know that there are people who love me more than they can express. I get lifted up in prayer constantly. I really feel like I get the better end of the deal.

Unfortunately, it's the people around me that suffer. They carry the burdens of worry and doubt. I see it on their faces sometimes, and I don't know what it would be like to be told that your spouse/ daughter/ sister/ best friend has a disease that there isn't a cure for. I am thankful for each of the people who have prayed for me. But, please also pray for Team BASG as a whole and individually. They are the most important people in my life. And sometimes they need the extra prayer boost even more than me.

1 comment:

  1. You are on FIRE and I *love* it.

    Thank you for sharing with such URGENCY. Thank you for being willing to think back to last year and walk through those moments again. Thank you STANTON for loving and encouraging B so much that she feels safe to share with such passion.

    I miss you both (and Cake and JB) so much.