Sunday, January 24, 2010
I guess most of you know from my facebook and webmagic that the lymphoma is back. Crappy diffuse large b cell again. Ill be starting a new drug called Belinostat which is another HDAC inhibitor like SAHA was. I wonder what would happen if you took both of them? Hmm.. That would be an interesting question for Dr. O. Im sure I would have no white count if that happened. I know none of us really know when we are going to leave this earth, but Im getting really tired of having this uncertainty of even walking my daughter to kindergarten on her first day. (Shes 2) What am I going to miss because of this crap? What point in my life did I do whatever I did to make my cells start going psycho? Im having a pity potty day. I mean, how many drugs are there left? I know they come out with drugs every month, but when are they just going to stop working all together? I guess I dont want to know, but I really dont want it to be any time soon. I always thought I would die an old woman with grandchildren, and maybe great grandchildren. But I know, that wont happen. = (
Monday, January 11, 2010
For those of you who arent on facebook, I thought Id post an update. My adrenal mass that was found on my previous pet scan 4 weeks ago has grown 6mm. It is a small mass, but I have been taken off my trial drugs until the pathology has come back. The SUV of this lesion was 31.9, so Im pretty sure we are looking at relapse. So, Dr. O hasnt given me a game plan of whats next so we'll see. Im pretty upset that the trial drug has only worked for about 6 months. I think the size of the lesion now is about 2.8cm. I havent been having any other symptoms, except extreme anxiety. So Dr O doesnt know what this is, but he doesnt think its lymphoma, but Ive been told that before. So Im not very trusting. Anyways, I thought Id let you know whats going on in my world... I guess Im just going to have to get used to managing this disease instead of curing it. That pisses me off. I hope everyone else is doing well. Love you guys!