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September 2014
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November 2014

Settling In At The Edge of Chaos

I left the MRI clinic about 11:00 Monday morning.  A little after 6:00 I got an email that there was a message for me in the patient portal.  It was Dr. Bashir, with the results:

Your MRI of the cervical spine shows almost complete resolution of the abnormal signal within the cervical spinal cord. There are no areas of enhancement. Previously noted transverse myelitis seems to have resolved completely without any loss of spinal cord volume (spinal cord atrophy). This is a very good result from cyclophosphamide therapy.

Based on the July MRI, this is what we were expecting and hoping for, but you never know, so I was a little distracted during the day waiting to hear.  Despite all the positive signs, there's always the worry of things regressing.

But at least for now, my overeager immune system has quit chewing up my spinal cord.  How much function I'll eventually regain remains unknown.  We'll see where the combination of physical therapy and neuroplasticity gets me.  Things have been slowly improving for several months, so I'm optimistic (while trying to stay realistic).  And I am quite relieved that I can stop the monthly cyclophosphamide infusions.

We were in Denver last week for the Quintessential MLA chapters meeting.   When we went out for lunch to the Cool River Cafe about half a mile away, Lynn pushed me in the lightweight wheelchair we call Lightning McQueen.  But at the hotel/conference center, I was able to get around pretty well with Roadrunner (my walking stick) and Guido, the 3-wheeled rollator.  (My wheeled assistive devices are all named for Cars characters).

I mentioned to several people that since I have labwork done every two weeks I know that I'm in excellent health -- blood pressure, kidneys, liver, cholesterol, etc., are all in great shape.  I can't walk and can't use my hands, but I'm in excellent health!

I use it as a laugh line, but I am certainly grateful that it's true and that I'm not trying to wrestle with a bunch of other health complications as well.

I'm writing this late in the day from my new office at the Edge of Chaos.  I mentioned to somebody that it has often felt the last few years that I've been swimming in the middle of chaos.  Now that I've moved to the Edge, things are looking quite mellow.