The Long Game

 Day 67 

I referred to Whack-a-Mole yesterday without defining it; it is a game in which you hit a mole on the head  in order for him to run underground and show up elsewhere.  Because you can't predict where he will turn up next, it is impossible to get rid of him. 

My brief experience with cancer has made me feel like test results can be unpredictable in this way.  Yesterday I learned that some of my Myeloma markers improved, some got worse and my immune system and kidneys paid the price for any gains made.  The point is not to get too fixated on any one reading or any one number: this is a long game.  Some aspects of our health will improve with treatment, at the cost of others.  The objective is to have most of the factors improve over time.  

Some people wished me a quick recovery when they found out I had cancer, which brought a smile to my face.  There is nothing speedy about getting through cancer, or at least at the stage I am in.  I will go through years of chemo before preparing for a bone marrow transplant which will take me out of commission for approximately 6 months.  Then, if all goes well, I will return to a modified version on my current chemo regime as a 'maintenance' strategy.  As far as I know, I will never go off of the 'maintenance' drugs. This is pretty standard for MM treatment.     If ever you were impatient before, you can't be impatient with this treatment, it is out of your control and it is not quick.  

In my most recent sleepless night I found a great podcast series available for free on Audible (Amazon's audiobook app) called the Multiple Myeloma Hub.  It is sponsored by the drug companies, but is a great series of 11 minute clips of specialists in the field explaining different aspects of treatments, the disease and cutting edge research.  It was an amazing education.  It brought to mind that it is worth defining two  important acronyms that are part of every MM treatment conversation: 

MRD - Minimum Residual Disease.  This is a small amount of cancer left in a patient's body when they are in remission or their cancer is well under control.  This MRD is what causes patients to come out of remission.  Getting to a point of 'negative' MRD (below the previous MRD threshold) is an objective of cancer treatment. 

PFS - Progression Free Survival.  This is the length of time during and after the treatment that a patient lives with the cancer but it does not get worse. In a clinical trial, measuring the progression-free survival is one way to see how well a new treatment works. 

Other acronyms:

http://www.cancerindex.org/medterm/medtm15.htm#section2

This is a link to a list of cancer abbreviations.  I will rarely use them in a blog, but it might be worth looking through them quickly before you meet with your doctor for the first time is I found that some of these were dropped all around the floor of my doctor's office, and I was thoroughly confused until I asked for an explanation. 

Give love, eat well, sleep as much as possible.  

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