Monday, August 20, 2012

Deja Vu

Ten days ago we learned that the latest chemo regime of velcade/dex is no longer working.  My IGGs jumped from 4500 to 6900 and the M spike jumped to 5.0--while being treated with velcade.  No more velcade.  We have now moved to a regime of bendamustin, revlimid, dex, and prednisone.  We'll know in about 2 to 3 weeks if this is working.

The discussion with Rifkin was yet another sobering event.  He again emphasized that I did not need to continue with treatment and that it would be very reasonable if  I elected to forgo any further treatment and just receive palliative care.  This is the 4th time I've been given this option, going back to my first visit to MDAnderson in November 2009.  As with each of those previous "offers" I turned him down.  But I think we all know that at some point the chemo won't work and then the decision will probably be different.  There are no more new drugs; I've had them all.  No more transplants as my blood would likely never recover--i.e., produce white and red cells and platelets.  As it is now I need platelets every 3 to 4 days and blood every 10 days.  And this is just the effects from revlimid.  So we continue in this alternate reality of seeing a train coming down the tracks heading straight for us and wondering if, once again, I can jump out of the way.

And just to insure that I don't get too comfortable, my right arm decided to take a vacation, so to speak.  As you know the left arm is broken and can't be treated.  About 10 days ago, while pulling something from the freezer my right arm snapped and has left me unable to lift anything.  I also can no longer drive.  That is what we all feared when I first started having pain there about 2 months ago.  What are they doing about it?  Nothing.  As Rifkin said, we can't do anything with the arm we know is broken, we certainly can't do anything with your right arm.

Susan  and the girls are rallying in support, of course.  And we continue to enjoy our lives.  In fact I think we laugh more now than we ever did.  What are you gonna do?  We will enjoy our every minute together.

Susan and I celebrated our 30th wedding anniversary this month.  What a wonderful event.  We are as much in love as ever and just enjoy each other's company.  I have dragged her through the worst of times with this disease yet she continues to care for me and treat me like a king.

I wish I had better news to impart but, who knows, maybe I'll be able to report good news on the next post.
Best to all,