Chapter 47 "But it’s no use now,” thought poor Alice, “to pretend to be two people! Why, there’s hardly enough of me left to make one respectable person!”

Oh my goodness  Where has another year gone?  They are starting to blend together.  But it's a new year beginning tomorrow.  Another fresh start.  Another chance to try to do it all over again.  Actually, to try to do it better, different.  Not all over again.  This year I feel I lost myself in this disease.  I let it get me down, I let it chip away at my patience, my optimism.  Despite many blessings over the year - new home, beautiful wedding of my daughter, my husband's continued plateau, sweetest grandchild on the face of the earth - I lose sight too easily of all the good simple daily blessings and choose instead to wallow in self pity, with millions of tiny violins playing a mournful tune!  Why do I continue to make this choice instead of another?  And in doing so, dig the hole deeper and make myself feel worse?  Poor me!  I realized this year what a B-I-T-C-H I can be.  Not a good measure of a year.

So here goes!  I'm going to try again to make better choices for myself - to fight to stay positive.  Not sure how I'll do it, but I'm going to try again.  Otherwise this disease - FTD or whatever disease it is that my husband ends up getting diagnosed with when all the testing is done - will keep taking - keep winning.  It has taken so much already. 

More doctor visits coming up - we met with an oncologist a couple of weeks ago - got more blood tests, have CT scans next week, and meet again the middle of January.  The test result that has taken us down this road was ACHR Ganglionic Neuronal AB - Dave's value was high.  To quote from the test results, this profile would support autoimmune encephalopathy.  There is a 30% predictive value for a cancer diagnosis.  So this is the doctors doing their due diligence.  Dave will have CT scans of his abdomen and pelvic area.  This is to check out this paraneoplastic syndrome, or hidden cancer.  We will wait and see.  There is still the question of FTD vs autoimmune encephalopathy.  I've been researching that.  It seems this mistake can be made often, but the autoimmune encephalopathy usually has a sudden onset - first thing that doesn't square with Dave's history.  The onset is usually severe enough that the diagnosis is pretty quick, not fifteen years later like ours was.  There are also some studies that seem to indicate that there is some question as to whether FTD can develop first and a part of the disease might cause the autoimmune disorder.  Right now I don't know enough.  Still trying to research it.  There is so much that is spot on with a diagnosis of FTD.   I'm going to ask about a spinal tap.  It seems there might be something more definitive to come out of that.  When I look at symptoms of autoimmune encephalopathy, they don't match up - at least not like FTD does.  So I'll have to make some notes,, see what the oncologist has to say, and go to the next appointment with the neurologist armed with questions.  Fun, fun, fun.

Sent an email to an old high school friend tonight - I happened to pass a big empty parking lot this evening and saw a car doing donut holes on the slippery pavement - the car was doing 360's, whirling around - remembered doing that once in high school with him.  Bad behavior - fun - risky - but it made me smile.  Reminded me of a feeling of freedom - something I'm missing.  Another thing to figure out how to find.  I sometimes feel I need to be very very careful of all I do - if something happens to me, Dave would be in trouble.  BIG trouble.  So, it'll be a new year.  Going to try one thing each day to make ME smile.  But do it cautiously and carefully!  And try to keep myself intact and of sane mind!

2018, bring it on!