Thank you brain lesion.

I don't normally make New Year's resolutions but I do find myself being extra reflective on Jan. 1.  And if ever there was a year in which I gain some wisdom, 2013 should be it.

Shortly after Ben went back to work in April he brought home this painting one of his students did. 

Painting by Crystal Mountain, 2013

Here is what she said: "This painting, to me, had two meanings.  The first was the actual disease and illness families face.  The painting can also be seen as a flower representing the beauty of your wife, the hope through this difficult situation, and the love that you two have for each other."  Rather poignant for a teenager no?

Her words, and her painting, really struck me, and they've been something I've come back to time and again these last 9 months.  Because yes brain lesion you were annoying and scary and unwelcome, but there was beauty in this whole experience too. A wise friend posted this last night on Facebook and I couldn't think of a better way to say it so I'll just steal it: "In 2014, I'm going to see the bright side of every situation not because I'm a Pollyanna but because there is a bright side to every situation. Life is like that. We get choices. We may not like our choices but they are there. I choose the bright side."  Thank you Rosemary Hook, I can't think of a better way to start 2014.

So in the spirit of the bright side, here are the lessons learned and the beautiful things dear ol' brain lesion brought me.

• When people get sick you hear horror stories.  Of heartless insurance company decisions, insensitive doctors, overworked nurses, etc etc.  I have no horror stories.  Instead I had the opportunity to be cared for by very bright, compassionate, PATIENT professionals.  They took the time to talk to us and answer our questions and indulge a biologist who knows just enough to be dangerous.  =)  I have doctors who give me their home phone number and work to get my case discussed by the smartest minds in Austin.  My insurance company didn't reject hospital stays or the multiple MRIs.  The radiology techs at Austin Radiological Association ask me how I'm doing and do a little dance when I tell them its shrinking.  
• I got to see pictures of my brain!  (it IS beautiful, and more so when the thing is gone!) And a sonogram of my heart!  And my cerebrospinal fluid!
• I LOVE my job. Being stuck at home made me appreciate how much I love what I do and the people I work with.  I hated to leave my students at the end of last semester and to not see my FlyLab kids walk across the stage at graduation last May.   I was so happy to be back at work in August and was humbled that my colleagues chose me to be department chair - brain lesion and all!  And when so many of you checked in to see how my first day back at school went, and when the students I'd abandoned in April came to tell me they were glad I was back...what an affirmation that I was where I was supposed to be.  
• I heard from so many of you - your hellos by email, Facebook, text, phone, cards and letters were wonderful!  Your prayers and well wishes mattered.  Knowing my team of shrink warriors was not only rooting for me but recruiting more shrink warriors in your churches, schools, offices, and communities was epic. You remind ME that it is important to keep in touch and tell the people you love how much they mean to you.
• It's OK to let go and not be in control all the time.  To live in the moment. Yes this was the hardest pill to swallow, but probably the most beautiful gift.  Because while I will always be a control freak and will ALWAYS see the beauty in a plan, a list, and enjoy the anticipation of a well planned visit/trip/event - always needing to be in control sort of takes you out of the present, and in the present is where those beautiful moments happen.  Things like this:
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  and this:
  
  
  and this:
  
  
  
  
  

• I have the best family and friends, coworkers, neighbors and acquaintances!  Everyone took such good care of us, stepping in to take over at St. Ed's and St. Mike's, bringing us food, driving me places, and just coming by to hang out and be sure I was still breathing during those long naps in the early days.  My parents were ready to come at the drop of a hat and were thoughtful enough to wait until we said "Yes, the hat is dropping now, please come;we could use a hug and some help". 
• And I know it is totally cliche to say you married your best friend for better or worse, but give this man a medal.  He has cleaned up more spilled glasses of water (and tubs of soup) than anyone should have to for a 39 year old woman.  He knows me well enough to know when to tell me NO and when I need the space to be a bit stubborn and perhaps push a bit more than I should.  He went from getting up in the middle of the night to walk me to the bathroom to letting me DRIVE A CAR.  BY MYSELF.  He knew when "when you get a chance could you...." really  meant "I need you to do this RIGHT NOW or I will obsess about it until I do it myself and mess it up and then you will have to fix it."  He made me laugh when I needed it and let me wallow when I needed that too.  And brain lesion, you gave us time - time to be together and just talk, have a cup of coffee, work on team sports like laundry, cleaning and cooking.  I think we spent more intense time together this last 9 months than we had the past 9 years and we remembered why we picked each other in the first place. 
  

So although I was glad to see you had shrunk to indiscernable levels on the MRI and I will not wish for your return in 2014 or beyond, thank you brain lesion for the beautiful you also brought.

----------------------------------------------------------------------------------------------------------------------

I don't know, this might be the last post.  It may be time to close this chapter and choose a new one for 2014.  Thank you for walking with us, for praying, for listening, for reading to the end.  We will continue to monitor the vascular malformation, I will get periodic MRIs and will still need to keep working on getting the balance back and left side better coordinated. But I hope the reports will continue to be 'normal and boring' - I've still got 2013's lessons to ponder.  =)

Shrink it real good

not to scale

It's still shrinking!  One thing I love about Dr. Valliant is he always gets to the point quickly.  He always says hello and asks how I'm doing and then "well your MRI looks great, want to go see?" YES!  They always do two - one with 'contrast' (a dye to help things stand out) and one without.  On the 'without' the radiologist added an arrow so we could find it because its so small you can barely see it unless you really know what you're looking for.  =) On the 'contrast' film, you can still see the spot, but it is much smaller and it now just looks like a halo of white rather than a black filled  (blood) lesion.

He said what remains may just be inflammation - hard to know.   Dr. Rose was there - he was the neurologist I saw in the hospital who first said it was vascular.  I hadn't seen him since the hospital but he said "You're a teacher right?  Biology?" - so he remembered!  He looked at the films and said I must've been real good to get this kind of early Christmas present.  I think it's just having all of you on my side!  He also reminded us that he 'told us so' that it was vascular.  You go on and gloat Dr. Rose, I'm glad you were right!

Ben wasn't able to go (he tried to convince me to record the whole appointment so I wouldn't forget to tell him anything) and he wanted to know - what now?  The answer is the same - nothing, wait and see, another MRI in 6 months. They said I will probably continue to improve...S...L...O...W...L....Y, but if I keep working at it its possible.  I can do that. 

So it was a good good day.  Denver next week and we will celebrate some more.  Thank you thank you again for being my warriors - it means so much. 

Ditching the Absent Minded Professor

Don't worry, I'm still an absent minded professor, I'm just ditching the look.  Vision correcting glasses version 1.0 have received an upgrade.

I've had the new specs for about 2 months - I know, I know 2 MONTHS and I'm just now telling you?  That's the problem with being a part of normal society; things like WORK get in the way of blogging for family and friends.  Sheesh.  Anyway, the glasses...

So yeah, I got myself ANOTHER Doctor - Dr. Keeland, who apologizes for not having as cool a name as Stonecipher or Valliant.  =) But she is a most beloved ophthalmologist who spent a full HOUR with us the first time I saw her.  When was the last time a doctor spent an hour one on one with you?  She fixed me up with prism lenses. 



So here I tried to make you a little drawing to show you how it works.

The double vision happens because the muscles in my left eye don't work quite right (she did all the tests to show it was a motor, not a neural pathway/visual processing issue); thus my left eye can't quite get up to the same focal point so I see two images, one a little down and to the left of the other.  Prisms bend light; so the prism lens bends the light to trick my brain into thinking my eyes are focused on the same spot - cool huh? Luckily we have a dear friend who is a optometrist and Joe helped me pick out frames for the two pair of glasses.  One is for distance, one for reading.  They work very well, and I am learning how to be a member of the glasses wearing population.  Things like walking in the rain, opening the oven door and trying to breathe while wearing a scarf
in the cold are now much more annoying - you glasses wearers know what I mean!  So it's been interesting going from NO glasses to 3 pair (I still wear version 1.0 occasionally, the prism ones do take some work on my part and, not gonna lie, I get lazy sometimes and blocking the vision from one eye is just easier); and it is quite a miracle that I haven't lost or crushed them yet.  Knock on wood.  

The double vision was by far the  most annoying lingering symptom - I was also feeling dizzy and was pretty sure that was due to the double vision.  Sure enough since I've had the glasses, that is gone.  My balance is still not perfect, but I don't feel like my head is spinning constantly - a huge help.  I still have some numbness in my face and my left hand is still a bit of a challenge on fine motor skills but I'm working on it (more now that I'm on break for awhile.) Seems to me the symptoms are pretty stable now, but I do still notice small improvements.  Like if there is an itch on my face I can hit the target with my left hand (and not scratch my face to shreds) 90% of the time.  Its the little things.

I had another MRI earlier this week and will see Dr. Valliant next Wednesday (12/18) so we'll see what this thing is doing - and I will update you.  My guess is not much, or its gone away but some damage remains which is why there are still some symptoms.  If that wasn't the case I'd think I'd have new or worsening symptoms. 

Thanksgiving 2013

We'll be going to Denver for a few days at Christmas to spend time with Owen, Dan, Jean, Mom and Dad.  Finally get to use those plane tickets from our Easter trip that got derailed.  The semester was great but I'm looking forward to a few weeks to cook and read and walk the dog.  Wishing all of you very happy holidays - we are so grateful to have you in our lives. 

Normal and boring

I had a doctors appointment this past week and for a change the diagnosis was normal and boring! (seriously he said exactly that).  But I'll get back to that story.

Since I last updated you, I can't really say I'm "normal" but on the health front things have been pretty boring - which is OK by us!  Things have improved so much - the walking, driving, balance, motor skills with my left hand, and even the eyes are much improved!  But I still see double and still feel dizzy sometimes (I think due in large part to the persistent double vision) and now that is really driving me crazy.  In the beginning there were much larger issues to worry about, but now everything else is better so I fixate on the vision.  I am kind of grateful to be that annoyed if it means other things are better!  And the patch and magic glasses still work so its fine, but I'd like to come up with something else.  I'll be seeing an ophthalmologist in a couple of weeks and we will see what she suggests. 

The improvements have slowed down in pace but I still find things I can do that I couldn't a week or a month ago.  Here are some accomplishments (some may be TMI but it's a pick me up to see them all listed out!):
*I can shave my legs by balancing on one leg rather than sitting on the floor of the shower
*I can wear non-sensible shoes - like flip flops.  For a long time I couldn't keep shoes on my left foot unless they had a back of some sort.  I'd take a step and the shoe would fly off. Now it stays put!
*I can snap my fingers on my left hand.
*I can get a glass of water to my mouth and back in my left hand without spilling it all over.
*I can do the kicks in the kickboxing DVD and not fall over

We have finished the first 2 weeks of school and it is great to be back.  I'm pretty worn out at the end of each day and am pretty lazy on the weekends!  But its great to be teaching, interacting with students and colleagues, and getting out of the house! 

So back to the boring and normal diagnosis...I was following up with Dr. Stonecipher (primary doc) after seeing Dr. Valliant (neurologist) earlier in August. As per usual he was being thorough and listened to my heart, and heard a murmur.  I was diagnosed with a benign murmur when I was a kid and he was pretty sure this was the same and not related to the brain lesion. But to be sure and to have a baseline he asked me to get an echocardiogram.  I was happy to oblige because hello real time imaging of my heart?!  Uh yeah, I definitely want to see that.  I warned the tech that I was a biologist and was way too excited about this procedure and she totally indulged me.  Made sure I could see the screen and answered my million questions.  It was SO COOL. Here's what it looks like: echo But this week I followed up with Dr. Stonecipher to hear the cardiologists report and as far as my heart goes - "normal and boring".

I'm hoping for more of those.

The London effect

Effect or affect?  I admit I had to look it up to be sure but I think I've got it right.  My English department friends can let me know!

So the London trip was great!  We had a wonderful time and I felt soooo good.  I'm not sure if it was the excitement of getting WAY out of the house, being with family  or the (much) cooler weather but I had no problems and kept up with the 4-6 miles of walking each day just fine.  I was tired every evening but so was everyone else! Its almost as if the more I do, the more I feel like I CAN DO.  Like when you have more energy after working out - I'm calling this the London effect.  The flight was long and after Ben cleaned up the third glass of water I spilled in the Chicago airport on what turned into an almost 9 hour layover, we decided traveling with me was like traveling with an 8 year old.  But we survived and got there and back with all our luggage.  I'm hoping the memories of flight delays and standing in line will quickly fade.

At Buckingham Palace

Young and hip - which one is 20?

While there my cousin Zachary turned 20 - he wanted to have a pint at the pub with the "young people" in the family (aka those of us without kids).  He settled for one drink at the hotel bar and then headed out to find his friends while the rest of the 'young hip people' called it a night!  Actually I should give Brad and Frank their props - I think they managed to stay up awhile after that.  But Zachary is now my first or second favorite 1st cousin once removed on that side of the family.  =)

Owen the gardener

Since returning I've been back at the lab for short days. In a couple weeks we take our research students to New Orleans to work at the USDA for a week.  At the end of July we will head to the farm to meet up with Dan,Jean and Owen!  So here is my opportunity to insert a gratuitous picture of my beautiful nephew!  Then football begins, then school and it will be fall already.  I'm enjoying returning to the familiar rhythms of life.

I don't know that this thing is completely beat but the trajectory is positive.  I might not update as frequently, because then I'd have to subject you to more gratuitous pictures of Moab and Owen to fill the space. =)  Thank you for your continued thoughts and prayers - whatever we are doing - its working!

good news and more good news

So yes, the THING is still getting smaller.  I don't have a number (how unsatisfying!) but I saw the MRI scans and it is definitely smaller.  not as big a change as last time, but it's still going in the right direction!  Good (great) news!

There also was not a lot of swelling or inflammation - which I was glad to hear.  I thought there might be since being off the steroids. Good news!

So then the big question - can we go to London?  He said no problem.  Good news!  For those of you thinking - is that a good idea, won't the pressure of flying make your head explode?  Cabin pressure is set to the equivalent of 7000-8000 ft above sea level.  Would you be ok with me driving to Santa Fe New Mexico (ele 7260 ft)?  What about being in a foreign country while ill?  We speak the language; they have good, modern medical care;  I bought a travel health insurance policy (if you take the umbrella, it won't rain!); I have email addresses and home phone numbers of my doctors; and my cousin lives there and can help us navigate the health system if needed.  We've covered about every base we can and like Dr. Rose said the first time I met him - 'don't let this thing dictate your actions - live your life'.  So we are living.  We still welcome your prayers for safe travel though!!

Unfortunately there are 3 people who are close to me who have not received news that is as good or hopeful in the last few weeks, regarding serious medical issues.  I ask that you remember them, and pray for healing if that is what is meant to be, and for peace for them and for their families. 

Summer research started this week so I'm back to work daily. I have 6 bright eager women who are a joy to work with.  But wow I forgot how tiring it is to go to work every day!  =) I was asleep by 8 pm on Friday night!  It feels good though and the girls are working hard and some good science is happening.  Some days I only make it a few hours, but it is  good to be back!   

So where do we go from here?  Drs. say the most improvement from brain injury happens in the first 2-3 months post event, but there can be substantial (but slower) improvement over the next 6 months - year (and even longer). So we've reached the plateau phase.  I won't get another MRI until Dec and won't see a Dr. for 2 months (!that seems unbelievable!) unless symptoms get worse or something.  I will continue with physical therapy and keep working on that stuff at home. I fully expect to keep improving and thank you for continuing to THINK SHRINK - it isn't gone yet.  We still have some work to do. 

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.