Monday, Oct 27- My Condition is Just So a Rare

Pain, pain, pain is just what I'm dealing with right now.  I had another lousy night sleep, which means I was up till about 330 in the morning.  This morning I talked to the oncologist and I neurologist about adjusting my pain meds.  I now have two morphine pills,  one of which is time released.  I am also still having trouble with swallowing and choking and coughing.

I just met with Dr. Williams and his neurology staff.  The preliminary reading of the MRI of my leg did not show any suspicious, inflamed, or enlarged nerves.  A previous MRI of my chest showed a very suspicious nerve under my right arm.  It was highlighted with intensity and enlarged; however, it was located in a position that was very high risk and no surgeon wanted to cut in that area.  So what do we do?  There is no nerve to biopsy.  Dr. Anderson, my oncologist, and his staff just came by.  The neurologist, the oncologist and the radiologist are trying to arrange a meeting this afternoon to figure out what to do.  Because they all seem to agree that leukemia is in the nerve one course of action is to do blind chemotherapy. If they do that it might take place tonight in the hospital.  It is odd to do chemo if you don't know what the problem is and can't measure the effectiveness of the drug.  However, if they do chemo and leukemia is actually in the nerve, much of my neuropathy symptoms, such as pain, swallowing, hoarseness, and motor skills might improve.

Speaking of hoarseness and swallowing I just met with the physical therapist and reviewed the video of the x-ray of me swallowing liquids.  We don't need to do anything now; however, I may need a feeding tube soon.  When I swallow, I often choke and food goes down my windpipe.  However, I'm currently strong enough to cough it up.  A feeding tube would ensure that I got sufficient nutrients on the hospital for an extended period of time.  It would not preclude me from eating food separately on the side.  I can eat some foods better than others.  Bread and rice, things that expand when exposed to liquid are problematic.  I need to focus on the foods that I can handle and drop some of the foods that make me choke and throw up.

I'm just doing stuff right now, plus I'm very tired.