Good News, Bad News

The good news is that I am getting the pain relatively under control.  The process has been one of of piecemeal, eclectic attempts.  Three times I have now been to a wonderful Dr. Zhao from Nanjing, China, who is very appropriate and professional and has, I believe, pulled the pain from its more extreme edges and is moving it back to where it began in the nerve.  It is an amazing process.  The first day I went I was so desperate she could have done just about anything to me but still I closed my eyes before she began and did not open them until she was finished.  The second time I had more courage.  After she inserts the needles she turns off the overhead light and leaves the room warm and quiet.  About 15 minutes later I decided to open my eyes.  A small light behind me cast a dark shadow on the wall of my face with needles sticking out of it.  I almost laughed out loud it was so outrageous!

The second approach was to create my own medicine regime.  The most important element is to catch the pain early in the day when it is at its lowest ebb and hit it with a double dose of the anti-seizure medication together with some over the counter ibuprofen and the antiviral I've been taking for inflammation.  Four hours later I take one less anti-seizure but maintain the ibuprofen.  Late afternoon I have experimented to see if I can go with out the ibuprofen until bed time.  Together with the acupuncture, this regime seems to be working at least to bring the pain down to a duller roar.

The third positive feature is that I went back to work on Monday and believe that my passion for it creates a much needed distraction.  I have worked as much as I could over the sick leave but there is no alternative to being among friends and colleagues.  Today is Tuesday and I am tired after two very full days, but I am very, very happy to be back on my feet and busy. Working at my father's restaurant set the tone thirty five years ago.  Trapped behind the bar for what seemed like interminable hours when there was no business was a minor form of torture for a frisky teen-ager, but I had a good time when it was active if only to prove to myself that I could keep up with the big league bartenders.   Granted now I don't have the construction workers coming in to see me at noon for shots, a beer and a burger, but I line up the e-mails in my inbox like customers at the bar waiting to take their order.  JK!

The bad news is that I am making serious inquiries to the Boston University Amyloid Treatment and Research Center for an evaluation.   I can no longer hide the facts from myself.  I have lambda light chain proteins in my blood, bone marrow and in the amyloid sample taken during the neurosurgery.  When I wrote to UPMC to ask one of the surgeons to assist in making sure the slides would be sent to BU, he wrote back saying, "I guess these findings confirm you have amyloidosis, which explains everything and now you can focus on the treatment."  Little did he know he is the first doctor to say it so plainly to me but over the weekend, out of a dream, I had already come to that likely conclusion.  So I did my own research and, aided by information from my cousin Elizabeth Morgan, decided to focus on BU because of the excellent reputation of their Center and the closer proximity that the Mayo Clinic.  And easier said than done about the potential treatments ... but let me learn more from BU before going down that road.  Right now the struggle is getting all of the slides (biopsy and marrow) to the Center so that they can schedule the evaluation.  Easier said than done about that point too!  Between HIPAA and every one's busy schedules I am spending a chunk of time just massaging the system of communications, although I will say in most cases everyone I actually talk with is very nice to me.

So there it is for now, I thought I should let you know.  More information when I have a date, which relies on BU receiving the slides, which relies on my contacting the right offices and signing the release forms, which relies on various forms of telecommunications technologies, which rely on ... you get the idea!

Tracy