Tuesday, August 20, 2013

Never to be NED

Acronyms...they're everywhere.  In the cancer world, there are tons of them.  Here are a few I use on a regular basis:  CBC, IV, CT, PO, NPO, NSCLC, IR, CA19-9, CEA, EGFR, ALK, ROS1, cMET, AHCC...the list goes on and on.

I recently learned of NED.  I searched it, read about it, and long for it.  No Evidence of Disease.  

At my most recent appointment I asked my oncologist about NED.  I was sadly told that I will never get there. Darn. NED really means NO evidence of disease and even if my lung tumor and tumors in my liver shrink away, the mets to my bones will always show up on imaging studies such as X-rays and CT scans.  I understand that once there are bone changes, even if there isn't any active cancer, the lesions in the bones are there forever.  

My oncologist, a very kind young man, gently reminded me that my disease is stable...not gone.  I had to remind myself that I've always been told that there is no cure for me.  Oftentimes, especially when I'm feeling good, I forget that.  

I frequently find myself saying, "It could be worse." Having stable disease allows me to work, exercise, see family and friends and get stuff done around the house.  It's not NED, but it's not bad. 


1 comment:

denise Friesen said...

Luna,

I think you LWWW. (LOOK WONDERFUL WITH WYNN!)

Thank-you for BYJ. (Blogging Your Journey). You PMA (positive mental attitude) about life is good to read about!

I look forward to making some memories with you soon.

ILY ~ I love you,
denise