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!

Chapter 46 "It would be so nice if something made sense for a change."

What if it's not FTD???

Dave's new neurologist did a range of blood tests that came back with a lot of abnormal results, showing a lot of inflammatory activity and auto immune issues.   Despite the MRI, he believes it is a central nervous system inflammatory condition . . . . and my mind is spinning!  Are you kidding???  I've educated myself on FTD, I've gone to conferences on it, I feel a community with the people who are dealing with this, I've financially supported the AFTD, I'm doing this blog of our journey - I"M ALL IN!  But now I feel I'm on my way out and freefalling!  There's nothing definitive yet.  How frustrating!

We are seeing an oncologist on Thursday for further evaluation of the inflammatory markers and possible paraneoplastic syndrome, or "hidden cancer".  What a roller coaster!  What do I do now?  A central nervous system inflammatory condition.  That's what we're looking at now.  I don't know what's next with regard to a definitive diagnosis.  I don't know anything about progression, prognosis, nothing!  I don't know what to do next!  I don't know if there's support out there for an unnamed disease!

He has all the symptoms of bvFTD - but that makes sense because he does have atrophy in the frontal and temporal areas - so he would suffer the same losses in ability, the same changes in personality, the same odd behaviors.  But his progression has been so so slow unlike so many others.  It makes me wonder how many others who have been living with this for a long time, who have experienced the slow progression, may actually have a different diagnosis than FTD?  I wonder if we're on the right track looking at something else?

One comment the doctor made was that he may not get drastically much worse.  Which is good, right?  But at the same time, that means this is my life for a very long time.  I'm having a very hard time wrapping my brain around it.  It's a different journey.  I guess in part because we don't have anything definitive yet.  I don't know.  I don't deal well with all this uncertainty!

So, I need to think on all this, cogitate a little.  Maybe take up drinking.  I don't know.  Unfortunately with my current state of mind, nothing looks to promising or rosey....so there's an adjustment needed.

Curiouser and curiouser.  Do I change the name of my blog if we end up with a different diagnosis?  This all feels so weird.  It's not like finding out you don't have cancer or something....it could be more bleak.  I have to come up with a different life plan!  No impending demise.  We'll see.

Happy holidays to me - and Dave did tell me he doesn't care if we decorate or anything.....he used to love Christmas just like I do...or did.  This year has been enlightening in realizing some things just don't matter to him.  This is a lonely journey, FTD or central nervous system inflammatory condition. . . which is a mouthful by the way.  FTD is much simpler to say!  Right?

Santa, please bring me a shiny pair of those  rose colored glasses for Christmas!