I know I haven't posted in a while. This is still somewhat hard for me. I have spent the last hour rereading through my posts, and I realize that there is still so much to write about. Part of the reason I have been holding off is because I want to be able to include pictures (and these pictures have to be scanned). For my family and friends they would probably rather not have to look at the pictures and see me that way again, but I really do think it helps tell the story.
Its funny, last Christmas my mom bought me this fuzzy white ski cap with a little turtle on the front. I think I must have had my hair up in a pony-tail, because when I tried the hat on, she got this look on her face. Then she said "okay, take it off." I guess in that very brief moment, she was taken back to when I was bald, and wore hats to keep my head warm. Its crazy to see that face of hers after all these years.
I understand how she feels, and that may be why she does not keep up with my blog postings, but that is okay. I know that my battle was just as hard on her as it was on me, for different reasons. Writing this blog is my way of coping and moving on. Someday I hope she is in a place where she can read it, laugh at the funny stories I recall, and maybe even help me remember the details I have forgotten.
Hi, thanks for the clarification and moire detail. yes, I did not see the initial write up on your surgery. And yes, you care incorrectly classified as CARCINOID CANCER in the Navigating Cancer which you should tell them about. They should classify you as CUP/Unknown Primary. Typically, the pathology does give reading on where the tumor may have started, however, not always the case! Indeed, the info I gave you is for carcinoid. Also, you disease was widespread but appears to have been addressed with the chemo combination! good for you! 8 years of no cancer! wow....
ReplyDeleteBut one thing, as someone with cancer, NOT ONE MD CAN REALLY TELL YOU WITH CLARITY WHAT YOUR LIFE PROGNOSIS IS NOR CAN THEY TELL YOU ITS TERMINAL!?!? yOU WERE JUST GIVEN WRONG INFO...BEEN THERE, DONE THAT!
I hear that too many times, to me, oncology now is ABOUT one step away from the medieval Md's who used to "bleed people" for a cure. They just dont know, ESP WITH RARE CANCER! and if you went to 5 different Md for your disease, you would get 5 different options and prognosis!
The end of day, you do have extensive disease but the chemo seems to have treated it. YOU BEAT THE ODDS! The interesting thing is pathology can clearly define the type and aggressiveness, but that happens.
enjoy life as I think you have been able to put that "elephant in the room" aside and cant even notice it!
Do tell NC to reclassify you as you do not have carcinoid!