Monday, July 2, 2012


Words are powerful things, they have the power to convey intense feelings and to mark periods of profound significance.  I've recently been pondering the meaning of a new favorite word - remission.  Definition:  A period during which symptoms of disease are reduced (partial remission) or disappear (complete remission).  Disappearance of all disease is complete remission; reduction tumor size by more than 50 percent is considered partial remission.
   As of last week it was confirmed that my tumor load continues to go down, over 60% and probably closer to 75% and slowly shrinking.  My fantastic results from last restaging at Moffitt (scans to check my tumor progress) have been confirmed.  Wait a minute - I think I smell some success around here!  Not complete remission or NED (no evidence of disease) but as close to that as I'm likely to ever see.  Some of my tumors have turned into hard little masses that are floating around my innards like little dead soldiers on a battlefield.  They are not bothering me, and maybe they will scare off any other cancer that might start getting ideas.  My little tokens of victory.
   The BRAF/MEK combination is working - has worked - and I'll stay on it indefinitely.  Side effects are minimal, prospects are good.  I get sick sometimes from the meds but I know it is the meds and not the cancer making me sick and that helps me tough it out.
   So let me take the time here to thank all of you for following my journey.  I acknowledge it is not over yet - there is no cure for cancer.  My remission may not last, no one has been on this drug combo for over a year so we are in unchartered territory in terms of long term results.  I could start rejecting the medication.  I could get hit by a bus tomorrow or abducted by aliens.  I'll just group all of that into a pile of things I don't want to happen to me and move on with my amazing life.
   I remain sad only over the intimate knowledge that I now have of the suffering of others with this disease.  I know the fear, the humiliation, the pain and the loss that invade the lives of cancer patients.  Multiply that times 20 million and it is almost soul crushing.  Dickinson said "Success is counted sweetest by those who never succeed" and its those that take the sweetness somewhat out of it for me.  But I have survived and I will continue to fight for those who cannot.
   I'm not sure what I'm supposed to call myself now, "cancer survivor" or "living with cancer" or something else.  I'm supposed to be creating a "new normal" and start dealing with the survivor guilt I feel for those fellow warriors that have fallen in the past year.  Those unfortunate enough to not have the BRAF mutation or good health insurance or a lucky choice of oncologist.  I'm supposed to find meaning in all of this, but all I want to do is breathe, remain calm and carry on.
But right now I will heartily enjoy sending a very loud and very intense "fuck you" to cancer.  You picked the wrong body to invade this time and I have thoroughly enjoyed watching you die.  To all of cancer out there I repeat one thing very clear that has been on my lips since day one, the mantra I repeated over and over again those long nights in the hospital, the words I said a million times waiting for the doctor to come in the room with results or watching chemo crawl through an IV into my arm - not me, not now.  No way, cancer.  Not me.  Not now.