Sorry folks! I really am still here. I promise! I just haven't really been in much of a writing mood I guess!
I am doing really well. Tired, but the joint pain seems to be less and less. Or at least it seems to last for a shorter period of time, which is a bonus!
I did just have a bout of the flu and that majorly sucked! One thing I have noticed is that when I am ill the inflammation lumps really start popping up. Last time I was sick they popped up like crazy. I seriously had about 40 of these inflammation lumps all over my body. And they hurt. Really hurt. At first anyway. After a few days they start to feel better, but I can always tell when one is getting ready to pop up because I hurt. Bad. This time I only had about 20 pop up, but they hurt. I hate that! Still, a small price to pay for all that I am getting out of this medicine! Plus, I've had biochemo, nothing is worse than biochemo!
Recently I was told of a friend of a friend who is also battling Melanoma. Our stories are so similiar it's scary. He has completed 4 rounds of biochemo. He returnd this week to MD Anderson and was informed that he has a new spot on his brain. So, in otherwords, the bio isnt working. At least not as well as you want it to. So, as for now, biochemo has been stopped and he is looking into Braf trials. You can visit his blog here. Click on the link that says "Brian's Fight" on the rigt hand side.Please say an extra prayer for this amazing guy!
Next Tuesday I head back to Nashville for CT scans. That's all. Just a quick scan, then I turn around and head back home. Seems kind of silly, right? But all scans have to be done at the same facility, so that is the reason I pay to fly to TN to have a scan.
April 20 is the big day for me. April 20 marks the 1 year mark for this trial. This drug works an average of 6 months, for me it has been twice that. In one sense, I am so very happy and so very grateful! On the other hand, I am a nervous wreck! I feel like it's just a waiting game. I'm just waiting for it to stop working. Just waiting. And that's an awful feeling. I know that's why I have been on edge lately. The uncertainty is rough. I know that it is all in God's hands, but sometimes relinquishing that control is difficult. Especially for someone like me! A control freak! For now, I need to trust that the Drs are reading my scans correctly and that God knows what he is doing. Thank you for all your prayers! Keep 'em coming!
Sjogren's and Bicycles
4 days ago