My LMS adventure

At this point, only my roommate, my mother and one friend know what I'm going to tell you. First let me apologize to all my friends for not telling you personally. I just can't do it. This disease spreads. It is rare and aggressive. I'll be fighting this for the rest of my life, whether I'm in active treatment or not. We've known there will be recurrences. The November surgery was due to a PET scan that showed a mass which turned out to be benign. Two days ago, I went for a CT/PET scan. Yesterday I got the results. There are new lung lesions/nodules. Something is happening with the liver (previously it was identified as scar tissue, now it is active). There are suspicious spots in my intestines, but with the healing (at least it shows on the PET scan, it doesn't seem to be getting smaller). There's activity within a neck lymph node, which (like the others) was there in October, and is now larger/more active. Several months ago, my oncologis...

When I say I've got cancer, and someone tells me to have a positive attitude, I'm torn.  I know what they mean.  Don't give up.  Keep fighting.  I know that my quality of life is better if I am focusing on the good in life, avoiding negative emotions, and surrounding myself with happy positive people.  It's easier to be around people who are happy than those who are miserable.  I won't scare off people, so will have a larger pool of volunteers to help. That all makes sense.  But somehow I hear, "You will get better if you have a positive attitude."  Maybe that is true of some cancers.  I am quite envious of all the bouncing boobs out there.  My cancer is special, yep, special and unique just like me.  (that was probably sarcastic.)  A positive attitude won't change the cancer.  How likely am I to die?  Only 14% who have this cancer survive five years after diagnosis. (ULMS with mets to Liver)  My ...

So I've been chasing statistics.  It helps deal with the unanswered questions.  Today I found this quote: " Uterine leiomyosarcoma (ULMS) is a rare type of uterine sarcoma —a cancerous tumor of the soft tissue of the uterus. According to the American Cancer Society, only about 1,600 out of 52,630 cases of uterine cancer will be uterine sarcomas (a). The National Cancer Institute indicates that uterine leiomyosarcoma makes up around 30% of all uterine sarcomas, which means around 480 women could be diagnosed with ULMS in 2014." from:   Leiomyosarcoma article from Hystersisters.com Okay, I'm one of the 480 (projected figure) who were diagnosed with this in 2014.  Moffitt has a wonderful patient portal.  I've been able to view the CT with contrast scan report from last Thursday.  My appointment with the oncologist is a week from Monday.  I see more testing in my future.  Meanwhile, I picked up the disks from my previous C...