lather, rinse, repeat

busy week and its only Wed!!  Mom and Dad got here on Sunday and it has been wonderful having them here.  help with cooking dog walking chauffeuring and of course a 'dad to do list' around the house.

Monday we went to meet a neuro oncologist  - Dr. Valliant - for a second opinion.  His assessment was essentially the same as Dr. Rose.  Symptoms too fast for tumor, could be vascular, new MRI scheduled for 4/29, meet for  results on 5/1.  so we continue waiting.

also got in with a great PT yesterday and interestingly both she and Dr. Valliant thought the eye stuff didn't quite fit with the thalamic lesion.  The thalamus controls visual processing but my problem is motor control of my left eye and that is 6th cranial nerve which is below the thalamus.  so what does that mean?  msybe a lesion there that didn't show up in the imaging or some generalized inflammation/immune response causing trouble. PT also thinks some cerebellar involvement because my left side doesn't seem to know where it is in space, which would explain some of my uncoordinatedness on that side.  I now have some arm and leg weights i wear on and off to help give my left side some spatial cues and that really helps.  more accessories.

some test results back and new ones out....all the melanoma tests were benign. no melanoma. MS panel had one value that was borderline high but hard to interpret without some of the other results so we wait on those.  I had 7 vials of blood drawn on Monday (seven!!!!) for a whole host of tests for the brain worms and other weird infections - fungi, lyme disease, viruses and tests for inflammatory markers.  they are truly trying to rule everything out!!

I still feel like I see small improvements in the symptoms.  my sense of taste is much better - thank goodness! facial numbness is less and eyeball control gets better each day.  Balance still makes me the most crazy but i don't let it slow me down too much.

yesterday was great. After PT i went into work and met with some of my research students who helped me get some lab work done.  It was fun to see them and get hugs from them and colleagues and feel productive. I also timed it just right so we could head straight to Uchi for happy hour when we were done! I'd like to claim that my creepy eye

in this picture is just the brain lesion but i think i'm just super excited to eat Uchi!!  I was going to take food pictures for you but it didn't stick around long enough. we couldn't wait.

Ben went back to work today reluctantly - but I think its important to get back into a more normal routine and I know his students need him and miss him.  We are so grateful to everyone at St. Mike's who stepped in to give him the time to take care of me.  We have been so lucky in all of this. 

SHRINK THE VASCULAR MALFORMATION!!