March 2013

I have joined a group of retired people who enjoy water color painting on Tuesday mornings.  It is a very lose operation, with skill levels all over the map.  After a few hours of painting, everyone walks around and sees what the others are doing.  There are a lot of landscapes, still life and the occasional portraits with people or animals that require more skill.  A few weeks ago, I was visiting with the lady who was painting next to me.  I told her I went into retirement early due to a medical issue.  We spoke about retirement and how we kept our interest up with painting or time with the grand kids.  She said her husband today has taken up cooking.  He had a stroke a few years ago and has some limitations on what he can do.  Our discussion opened the door on how your perspective is changed as you go through a medical challenge.  I told her one of the things I struggle with is how people relate to me while I work through this illness.  I know I look different on the outside as far as what I can do and manage.  But my thinking is the same and I am the same person inside.  I have the same interests and passions as I did years earlier.  She said her husband struggles with this also.  Then she said, “Your heart is the same.  You are the same person.”  That caused me to pause and smile.  I wanted to say, “No.  My heart is not the same.  I have a new tansplanted heart” but I held my thoughts.  She was unaware that I had gone through a heart transplant some three and a half years earlier.  But I did not have a brain transplant.  I think the same.  I react the same.  I view situations in a similar way as I had years ago.  But physically, there are significant differences.  I have told my two sons that at some point in the future, I may not be able to respond to their visits or conversations, but please assume I understand everything you are saying to me.  The things we enjoy, the emotions we had when we were healthy, things that make us laugh and raise our interest do not change. (The painting above was something I was playing with; shoes across power lines).  

I have started a new chemotherapy called Pomalidomide or Pomalysts.  This drug has just been approved for use with Multiple Myeloma.  It is supposed to have fewer side effects and will work with the body’s immune system against some cancers.  I have mentioned in the past that AL Amyloidosis is similar to Multiple Myeloma as both are bone marrow disorders.  Drugs that help Multiple Myeloma patients seem to help those with Amyloidosis.  As of today, there is little information out on how effective this will be against AL Amyloidosis.  My oncologist prescribed a very low dose to see how well I would tolerate this.  My initial experience has been an increase in light headedness.  So the medication was reduced.  After a few days I was tolerating the medication better.  Let’s just hope it is still affective against the cells that are generating the bad proteins.  It will be a few months before a change in the amount of damaging proteins that circulate in my blood system is reduced. 

I am leaving a table of a few important indices from my last several blood draws for comparison and to track the strength of my bone marrow to keep me healthy.  Amyloid, Multiple Myeloma and most cancer patients that are tracking this blog will know what these numbers represent. Compare the trends over time and see how close I am to the reference values, which represent a normal or healthy level of the sample.