Exit Hold, Proceed As Cleared

Blue Angels, San Francisco

It has been an up and down health ride these last three months or so, which means some things have been good, some things have been a little concerning, but we are now getting things resolved and back on track, but with some changes.

As you probably know, almost exactly two years ago I was lucky to get placed in a research study and was randomly selected to try two immunology drugs, to see if they were more effective as a first treatment than chemo or chemo in combination with one immunology drug.  The first year went really well.  The lesions were reduced significantly and I had almost no side effects. Then the side effects started kicking in, itching, joint pain, stiffness, lack of appetite, fatigue, but I accepted that as the price to pay for a continued reduction in the size of the lesions.  Then, my liver, and to a lesser extent my pancreas, started showing signs of stress, based on biweekly blood tests.  So my oncologist, Dr. Alan Kramer, whom I like very much, respect, and have complete confidence in, recommended we give my system a rest from the immune drugs and take steroids to eliminate any inflammation.

That part has been great.  Within 24 hours my pain was gone, the itching was gone (we’re talking about, “Oh my god, will anything stop this itching?”), the stiffness and inflexibility was gone, and very importantly, my appetite was back and I quit losing weight.  I had a normal life again and was so relieved.

But it turns out that the problems with the liver, bile duct specifically, were probably not being caused by inflammation, but rather by lymph nodes pressing on the duct.  What is causing the pressure can’t be discerned for sure from the CT scans, and a biopsy doesn’t seem to be warranted, because whatever it is needs to be treated with either steroids or chemotherapy, and I’m on both. So that is the direction we’re going, starting at my next appointment, a week from now.

Dr. Kramer has said that this chemo is very well tolerated, maybe a rash, maybe some nausea, and has been effective with others.  So, having been such of fan of the immunology therapy, it is hard to put it aside, but it’s effectiveness seems to have ended.  As Dr. Kramer was giving instructions to his nurses, I said, “I feel like I’m changing from a Red Sox fan to a Yankees fan.”  Which is about as likely for me to do as it would a Manhattan liberal announcing that he has become a neo conservative. No more power lunch tables for you, you’re going back next to the restrooms.

It’s a nice restroom though, with cloth towels and nice smelling soap.  I’m okay.