doppelganger

It's been awhile since I've written - right now we are just in a holding pattern, waiting for the next brain pictures to see whats going on.  I am completely off the steroids now (since Monday) and still the only things I've noticed are the tiredness (the steroids really had me wired!) - everything seems to take a lot of effort again!  Which is a little frustrating but I keep reminding myself that the energy I had wasn't real - and that its good to know when I need to slow down and rest and not have that masked by the drugs.   The numbness in my face also continues - still not nearly as bad as in the beginning AND I haven't lost my sense of taste - I'm thankful for that! My vision is much better as is the balance - I rarely even use my cane anymore.  And I've been driving - when Ben is with me, but I do pretty well!

My next MRI is coming up this Friday (5.31) so we can see how things look after being off the steroids.  I meet with the neurologist the following Wednesday (6.5).  I expect there may be more inflammation again, but hopefully the lesion itself isn't any bigger (or has shrunk more - I'd take that!) We will also determine at that time whether I can get on a plane to London the following

photo by Suzy Gaeddert

week.   Its time for the biannual Goering-Gaeddert family reunion and this year we will gather in London hosted by Barry and family (picture is some of us at our 2009 get together in  San Diego).  Dr. Vaillant said last time he didn't see why I couldn't go as long as things still looked good but wanted to reassess again before the trip.  So send good vibes!  We will only be gone a week and I will have lots of folks to take care of me and remind me to take it easy.

So let me explain the title of this post.  I went for a check-in with Dr. Stonecipher on Thursday.  We talked about my left side, which is still less coordinated and not as much under my control (I feel like) as the right - interesting new theory. He says because I'm right handed and left brain dominant I need to be very conscious about using/working my left side because not only is my natural default to use the right side (esp my right hand) but he says my brain is sabotaging efforts to work the left.  That consciously I can know I need to use my left side but my brain tells my body not to because it's easier/faster to use the right.  So when Ben tells me to type with both hands and 10 min later finds me only using my right again that I might not be doing it consciously(ie. I'm NOT ignoring him!) - it's my evil left brain trying to take over!!    But if i don't use it i'll loose it...and it may not matter now but in 20 years I want to have full use of both sides of my body!  I was at work on Thursday and was very conscious of just how much I don't use my left hand.  So whether he's right about the left brain  doppelganger sabotaging things at least I am going to be much more intentional about giving my left side things to do!! And Ben gets to keep nagging me. =) So I've started a left side training program.  It may take 45 minutes to type a paragraph but darn-it I'm going to use both hands - left brain be damned!

Thank you for continuing to care for us through your thoughts and prayers. 

inquiring minds

The tumor board met Wednesday morning to talk about me:  Good news is no one thinks its a tumor, bad news is they don't know what it is (surprise!) but really seem to be leaning towards vascular. There are a couple different types of vascular lesions  it could be - some are more likely to re-bleed than others but short of brain surgery there's not really anything to do and the risks of that(in this location especially) are as high or higher than a re-bleed so no brain surgery (I'm ok with that).So we wait for next MRI and see whats happening at the end of May.

So far so good coming off the steroids.  The main thing I've noticed is I'm more tired again.  I had mentioned previously  that I felt my endurance had greatly improved - along with that I was awake most mornings at 4 am planning menus and grocery lists, writing emails, thinking up exam questions.  I really got a lot of good work done!  But I think now that was all a side effect of the steroids.  I'm back to sleeping through the nights like a rock and usually one nap a day.  That is probably better for my brain.  The only other thing that might be a bit worse is the numbness in my face - but I''m having trouble deciding if it is or not - if so it's subtle because it's nothing like in the beginning when my entire jaw and teeth ached/hurt.   otherwise I still feel pretty good.

This was finals week at SEU and this morning is graduation - the first one I've missed. It's bittersweet- graduation is long...they do Dec/May and Aug graduates, grad and undergrad all at the same time; I heard just over1000 students will cross the stage  this morning. But I do really enjoy seeing our students cross that stage - science is always last - save the best! And its fun to remember them as freshmen/sophomores and see just how far they've come.  I have 4 research students graduating today and I am SO proud of them!  Congrats Katie, Ivan, Matt and Taylor!

fly lab grads 2013

Now a couple weeks to relax before I start summer research with students in June.  ahhhh summer!

Half

Ok so half is a bit of an exaggeration but I figure you'll cut me some slack - yesterday was a pretty exciting day of KNOWING.  If you haven't heard the new MRI scans from Monday showed that the lesion in my brain SHRANK almost 40% from 15.1 mm to 9.6 mm thats 36.4% smaller if we are being precise.  When we saw Dr. Vaillant he said 'your scans look great, it's smaller by almost half" - Ben said he thought I was going to leap off the exam table and wrap him in a bear hug.  That is about the way I felt.  I was nervous - we all were, stressed, anxious, wondering what these pictures were going to show.  I was pretty confident it wasn't going to be bigger but an almost 40% reduction?  I think that was beyond all our biggest hopes.  Mom and Dad came down on Sunday so it was fun to have them there and share in the good news. He also said it appeared that most of the swelling and inflammation was also gone.  Yahoo!!

So what now?  We WAIT of course.  If it is resolving on its own we just stay the course because it's not good to dig around in the thalamus.  So we still don't know what it is.  The tumor board meets next Wed to discuss my case and my primary care doc will join by conference call.  I will see him next Thursday so he can fill me in and let me know if anyone had other good ideas. There is also a good possibility  that a lot of the improvements are due to the steroids I've been taking and I can't keep taking them forever.  So I will taper those down and we will see what happens with the symptoms.  They could come back/get worse.  I have another MRI scheduled for May 31 so we can see what's going on. 

So keep praying for shrinkage, for the symptoms to continue to improve even without the steroids (or not get worse), for continued patience, grace and good attitudes. 

I made an executive decision last weekend that whatever the news yesterday we would need a great meal so I made a reservation at Lenoir - which has been open almost a year and a half and we had not been.  They do a 3 course prix-fixe menu and you can see there are 12 options. There were 4 of us, 3 courses each - you can do the math we just asked them to bring us one of everything on the menu and pace it as the chef/server saw fit.  So fun!  We love to eat that way!!!  It was amazing and I've no doubt the good news made everything taste better. 

all of us after an extremely satisfying dinner and day!

Land courses - the goat (front) and rabbit (middle) were about our favorites of the night!

Dream (dessert) courses.  The baklava with blue cheese (back left ) was amazing!

Today is a relax day - I'm feeling kind of exhausted - i think all the anticipation of what we'd learn yesterday really wore me out.  Moab is patiently waiting for me to come take a nap with her so I'd better get on that.  Thank you for all your support and for celebrating with us.