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. 

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.

Knowing

Knowing.  Not knowing.  Most of this has been the latter and that does drive us crazy.  As a scientist I like to be able to NAME things.  I want to KNOW what this is in my head so I can read about it and someone can tell me what the usual prognosis is, what can we expect, what should we be doing, is there a treatment? This may be as much the control freak in me as the scientist, truth be told.  =)

Next week there may be more Knowing.  I have the second MRI on Monday morning at 7 am. It will have been 4.5 weeks since the first MRI.  What will it show?  I'm nervous I'll admit.  I really believe it will NOT show that this thing has gotten bigger because I think I would be having other/worsening symptoms and that is something I do know - things are not worse.  But what would smaller/same mean?  Or will it look different - less of a halo of inflammation?  Will they see something else they missed the first time?  Will we give it a name?  Will there be some treatment plan besides waiting? So many questions.  I don't meet with the Dr. until Wed so don't expect any knowing before then.  I will let you know when I do. 

There are some things I know this week:
1. All the blood tests came back negative (within normal limits).  So we KNOW its nothing as 'simple' (aka nameable/treatable) as brainworms, strange southwestern fungi, lyme disease or some massive autoimmune attack.  As I understand it MS is also ruled out now.
2.  My endurance has improved A LOT.  Even without a nap I can stay awake through an evening movie - even on days when I have appointments or have gone into work.  I do miss my three nap minimum but i see this as progress.
3.  My neuro doc Vaillant got me on the docket for the Austin tumor board.  That is a group of oncologists that meet regularly  ( once a week? month?) to discuss 'interesting' and confusing ( i gathered) cases and I am the case for next week!  Kinda cool that all the smartest docs in Austin will be thinking about my head.  I wonder what they will come up with and if it will help us KNOW anything more concretely.
4. I am loved.  I feel your prayers, good wishes and thoughts daily and know I am loved and cared for.  What a powerful thing.  Thank you. 

gratitude and good posture

thank you.  Those words seem so incredibly small these days.  I don't know that there are words or actions large enough to ever convey  fully the appreciation Ben and I feel for all of you.  We have been so loved these last 2.5 weeks (has it only been 2.5 weeks??) - gratitude, gratefulness, thankfulness, appreciativeness, our hearts runneth over and we say thank you thank you thank you again and again for all of you.

Literally our mail box, email and facebook inboxes, texts runneth over.  And your thoughts and prayers are my favorites - they really make my day and put things in perspective.

Our fridge, freezer (and our neighbors freezer!) overflow with tasty vittles that have made heating up a quick dinner and satisfying a sweet tooth so easy (maybe too easy!! I have not resisted your tasty wares).

Our plant stands and vases burst with beautiful blooms that also smell good and I can never get enough of looking at plants.   They make me so happy.

Our colleagues at St. Ed's and St. Mikes continue to fill in and pick up for us - what a blessing not to have to worry!! Ben goes in most days to teach his math classes but his after school stuff is covered so he can come home at 3 or 4 instead of 6 or 7.  That is HUGE.  And if he needs to take a day off to help me that hasn't been a problem.

Me?  I continue to notice small improvements.  My taste is BACK!  I'd say like 90%. Thank goodness.  I don't think I would ace any Gordon Ramsey palate challenges but everyday eating is a happy thing again.  Most importantly the symptoms are not getting worse and there are no new symptoms.  That is good news.

I saw a new PT yesterday (5 min from the house no Austin traffic to contend with!!) who pretty much agreed with the other assessments.  They have always been trying to decide if my left sided uncoordinatedness is a strength thing or this not knowing where my limbs are in space.  Still seems the latter, strength wise i am pretty balanced except for my left shoulder; she also discovered that I carry that shoulder up and foward and that bad posture seems to exacerbate my uncoordinatedness.  When she got me aligned I could do fine motor tasks better.  How strange.  So kids when your mom (or piano teacher - thanks Stella!) tells you to sit up straight you should listen!! Probably this is something I've done for a long time not brain lesion specific but hard to know for sure.

This week may see the return of the last of the CSF tests and all those blood tests.  I assume that will all be negative and we just continue waiting for MRI on the 29th.

Tomorrow I will have lunch with a dear friend and Friday I have 4 students presenting at the annual SEU Symposium on Undergraduate Research and Creative Expression (SOURCE) - they will do a great job.  Its so nice to have a few normal things to look forward to each week. 

SVTM!!

good days and more good days

wow.  I'm starting to wonder if this brain lesion is ever going to cause me any really bad days.  Not that I'm wanting them you know, I just continue to be amazed at just how good I feel and how many fun things I can still do.

It was a great week having mom and dad here.  We did a lot of eating and cooking, organizing and then this morning a whirl wind of cleaning.  Felt so good!!  Wednesday we went to one of our favorite places, the Natural Gardner (plant nursery) which meant yesterday we got to garden!!  Sun on our backs, fingers in the dirt...what could be better? My dad found this antique headboard at a farm sale a few years ago and it now is in our garden waiting for the jasmine to grow up over it and hide the green electrical box in the backyard.  We love it!!

Been working on my new physical therapy stuff - the dogs like helping with the marching around the house.  My entourage.  =) Not everyday is perfect but on the whole things still seem to  be improving - still no pain and I am very functional!!!

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!!

learning to say no

No is not a very common word in my lexicon. I'm a doer - so of couse i'd love to help out, sit on that committee, etc etc.  I"ve had to start saying no - no volunteering at my beloved Ten Thousand Villages for awhile, no to SEU recriuiting events, I even got to cancel a meting and miss 2 others this week ( ahhh the freedom!). But even harder is saying no to myself.  I want to cook and clean and garden and take care of my household and family.  Can I still do those things? - YES! BUT
(oh I dislike that word) I have to recognize my limitations and sometimes say no, i can't right now or without help. OTHER THAN 'SHIRINK THE VASCULAR MALFORMATION' the other common refrain heard around our house is 'SLOW DOWN TURBO'. Ben is great about letting me try even when i've knocked several glasses of water off the side tables that he gets to clean up yet again.

Cnine therapy - Our friends Joe and Liza are off to the tropics for 10 days so we are watching 'the boys - Bruno and Gomez.  They help entertain Moab and help slow me down.

  I mean what would you choose - laundry or a nap on the couch with these 3?  I'm now on some anti-seizure meds - the docs think my left sided uncoordinatedness might be small seizures.  My leg sometimes freezes up and Ben says when I hold his hand mine will seem to involuntarily clench.  It makes me groggy so that helps facilitate more naps.  Otherwise none of the meds seem to be bothering me. 

My parents are on their way down today - it will be so good just to hug them but  I'm also thankful Ben will get some caretaker help.   you guys he's been so great - totally at my beck and call, hovering but not smothering, making me laugh when i need it and telling me to slow down when i need that too.  And I secretely think he likes being able to tell me what to do a bit more.  But i'm sure he could use a breather -goodness knows he has earned itaking care of my styubborn butt!

stay calm its probably not a brain worm.

Lots of progress on the doctoring front today!!  Went back to see my primary care doc - Stonecipher, who is the most awesome.  He got us connected with physical therapy finally, and got us an appt. for a second opinion with another neuro-oncologist. Although he said his usual go to for a second opinion would be Dr. Rose so we are already in the best hands. Excellent.  He also asked if anyone had suggested cysticercosis  - the

larval form of the pork tapeworm which cysts up in your brain for years before hatching and eating your nervous system into swiss cheese - look at that!! common in the part of mexico i frequented at least 2x a year for my whole life (hello Rocky point!!).He talked to his infectious disease doc friend who was intrigued (I'm like an epidsode of House!) and wanted to see me today. So off we went.  He thinks its highly unlikely its a worm he said you'd actually see the little bugger in the MRI.But its a simple blood antigen test so easy to do and rule out. more waiting.  I must admit i was a little let down it wasn't a brain worm.  I mean talk about a good story to freak out my students. I was having Wrath of Kahn flashes.

Also saw the dermatologist and she says all my moles are happy moles so melanoma is not really on the radar.  she did one biopsy on a dark freckle to be extra careful. more waiting. no more appts til next weeek which is ok.  I continue to feel pretty good in the mornings tired and more symptomatic by evening.  ben thinks the balance and getting around continues to improve.

i have heard from so many wonderful   friends in the last few days - your words of encouragement mean so much.  I know everyone wants to DO something (I get that!) but really just hearing from you is such an emotional boost and just what i need.  I try to respond to everyone but if i miss you it's not because i didn't notice I'm jut inundated with love. And i love you right back.

team sports and nothing happens on the weekened

The very wise Ms. Rosemary Hook, who has spent more than her fair share of time in hospitals and dealing with Dr.s this year, once told me 'don't ever get admitted to the hospital on the weekend because nothing happens on the weekends'.  Getting discharged on the weekened seems to have the same effect.  My attending physician Dr. Gowda was not there on Sat. but her resident wrote a scrip for outpatient rehab (physical therapy).  My nurse tried to get an appointment set up but, no one there on the weekened.  She said she'd email the hospital case workers so they would have my info monday morning and could get it set up.  If they hadn't called by 10 yesterday I should call and remind them.  They hadn't, I did, they had no idea who I was and said I needed to call myself since they don't know my schedule.  So I did and got machines and instructions to 'send the referral first'....no progress.  So still waiting to set that up, trying to get Dr. Gowda back on the case.  If that doesn't work my primary care Doc gave me his home number and said to call if we need anything especially if we are getting the run around, he would be happy to intervene.  He's awesome. Yay Dr. Stonecipher (his son is an SEU student too).

Meanwhile back at the Ranch - we are getting good at team sports: team laundry, team dishes, team cooking.  Good thing I married such a sports nut!  He says  "Man its exhausting being you!" lol its true that I am not very good at sitting still - there are always things to check off the list.  So I'm trying to do better at relaxing and Ben smiles when I ask about the progress on the clothes in the dryer.

lucky # 13

yesterday was our (lucky) 13th wedding anniversary - no foolin!  I guess this is the year we work on the 'for worse' parts of the vows. But we had a good day - longest walk around the neighborhood yet!! And we went out for mexican food and since he knows me so well (and is becoming a flower/plant freak himself) he brought home a beautiful Phalaenopsis orchid to lift my spirits and give me something else to fret over.  I don't have a good track record with orchids but he is determined we can do it.  Team orchid growing.  


How am I doing? You all want to know.  All things considered quite well.  We think we see small improvements, mornings are better, by evening I'm tired and all the bad symptoms seem magnified.  I do pretty well getting around - even went to the grocery store yesterday which i was very excited about! Ben seems to need to catch me less and less.  Is it that I am getting used to my surroundings or is it improvement? I'll take it either way.  We are almost back to our 3 mile walking route around the neighborhood so that feels good.  no pain, I'm very comfortable especially if I don't have to get anywhere very fast.  this morning i got to sit on the porch with a cup of coffee and my two favorite warm blooded mammals and listen to a gentle rain.  I have much to be thankful for, life is good.

What now and what can you do?

We got home Saturday about 3, it was glorious.  Breathing your own air, no IV in my arm and constant vitals checks.  No other patients moaning in the room next door.  Fresh air and natural light. Reunited with Moab.  It was a little slice of heaven.
We weren't able to swipe the walker from the hospital - Nurse Alison said they would notice that, but she said we should take the safety belt they'd just assume it got lost in the laundry.  So I have a host of accoutrements that make it possible to get around.

Mo is helping me model - legit pirate patch and upgrade to the vision correcting glasses courtesy of our dear friend and awewsome optician Joe.  Glasses 1.0 had magnifying lenses which were kind of messing with me.  Joe had a pair without lenses so we could just add tape and go. The cane helps with balance.  And Ben is fond of the safey belt - easy to grab me when I start to go over.  So he is never far behind.   He is an excellent nurse and physical therapist!



My amazing colleagues have scrambled and gotten my classes covered for the rest of the semester so I can rest and focus on getting better.  What an amazing gift.  This next week I will start outpatient therapy to work on the balance and vision issues and will make appointments for some follow up work/tests.  Have some moles on my back that need to be biopsied (apparently melanoma likes to go to the brain, but again 'the thalamus is a weird place to go') and will likely get the results from the MS panel.  And we will look into getting a second opinion because ya know, it is my brain. Will keep you posted here.


What can you do?  Thank you for all your offers of help!!
1.  Think good thoughts and say prayers for healing (shrink the vascular malformation!) for patience for grace for wise doctors (both conventionally and unconventionally wise) and for the annoying symptoms to subside.  It would be nice to get back to feeling somewhat normal.  I'm not in any pain though so I'm thankful for that. 
2.  Emails, texts, facebook messages are wonderful!  I love hearing from you.  Short visits are nice too since it breaks up the day!  Call or text first as we might be out and about at appointments or taking a short walk around the neighborhood(which can take quite awhile at my pace!)
3.  Ben is able to stay home with me this week but I might need some chauffeuring at some point. Dr. Rose says  just close one eye to drive "Stereopsis is overrated' but I'm not convinced that's a good idea yet. =)
4.  Yes food is nice.  As much as we love to eat out we will crave some home cooking soon.  So if that is something you enjoy we are not opposed to leftovers!

Mostly I am just so thankful to have all y'all on my side.  I feel your strength coming my way - thank you.  I hesitate to use the word blessed because it suggests others might not be but that is really the overwhelming thing i feel right now - blessed to have all of you holding me up and in my life. We can do this.

'the thalamus is a weird place to go"

So I have a brain surgeon.  This was not on the bucket list but we'll roll with it.  The brain surgeon is Dr. Rose and he was indeed worth waiting for.  He looks to be about 60, like he could be your grandpa and he sits on the side of your bed and holds your hand and makes you feel like you are the only patient he has.  It took so long for him to get to us because he got called to emergency surgery at another hospital to take care of  drunk 18 year old who jumped off a 12 story building Friday night.  We gave him a pass.

And here's more GOOD NEWS or at least another option to hope for. Dr. Rose thinks there is a good possibility this is a cryptic vascular malformation.  As I understand it (I'm trying not to google and Web MD  too much yet)kind of like an aneurysm, a weakened part of the vessel that enlarges and presses on the tissue and wrecks havoc.  On the MRI the center of the lesion is dark, consistent with blood and blood breakdown products.  Tumors will vascularize too but he says the thalamus is a weird place for a tumor to go because there are other places in the brain that are more rich in blood vessels like the cortex.  It is also a strange place to see an MS lesion and he'd expect to see others along the spinal cord.  It could still be a primary tumor of the brain but he thought I'd be having more symptoms and that they would have come on more gradually.

So what was his advice?  To wait! If it is vascular a biopsy could cause a massive hemorrhage.  No thank you.  He said to do another MRI in 4-6 weeks.  A vascular lesion will tend to resolve itself, a tumor will get bigger.  But doesn't conventional wisdom say not to delay with a tumor?  Dr. Rose says conventional wisdom may be conventional but it's rarely wisdom!  He says treatment would be the same and we'll have some additional tests to provide guidance in the next few weeks.  I don't love more waiting and not really knowing but I like this new option best.

So I'm visualizing a deflating balloon.   SHRINK THE VASCULAR MALFORMATION.  Say it with me now people, pray it with me now. 

Waiging at the Seton Inn

I have never spent time in the hospital, except for when I was born and even without  a lesion in my brain I wouldn't remember that!  I've not even visited many people in the hospital so this was all new to me.  I am happy to report that everyone at Seton main hospital was so wonderful - all very caring and pleasant and very attentive (VERY) people.  They are good at their jobs and I felt in very good hands.  I can even say the food wasn't as terrible as I expected (maybe I should be happy for the dulled sense of taste?)but it wasn't picture worthy and the P Terry's Ben brought me Thursday night was just the best!!
So Thursday I got my fall risk bracelet and went upstairs to room 637 - home for the next two nights.  Thursday evening we did a CT scan, if it is a tumor they were worried it might have metastasized from another site, but the scan was clear so if it was a tumor it was the only one we were dealing with .  GOOD NEWS. 

Walker, Texas Fall Risk.

I slept well, not sure Ben did in his recliner but brilliant man that he is he thought to bring my toothbrush which made everything better.  I even slept through several vital checks by Princess and the night crew.  Friday morning Occupational and Physical Threrapy came to see me and got me totally hooked up with the latest in hospital fashion. Walker - check. Safety harness so Ben or staff can keep me upright - check, and the magic glasses.  The glasses are the lowest tech vision correcting device ever.  I LOVE IT. Makes me feel old school.  Just reading glasses with some opaque tape in the right corner of the left lens. totally takes away the duplicate images - amazing!  So now we could go for some short walks down the hallway and escape our room.

Also had a lumbar puncture on Friday morning and got to see my very own Cerebral-spinal fluid!  Another fun scientist first.  They'll use that to test for MS and i think they can look to see if there are any funny cancerous looking cells in there too.  

But there is a lot of waiting when you are a patient.  And we are not patient patients. Gives you a lot of time to think and gave Ben and I some good time together to just be and talk. We don't do that often enough. And I spent a lot of time texting and talking to people I love so I guess waiting isn't all bad. But about noon on Friday the neurologists said they had talked to the neurosurgeon and he saw the films and said "Yeah I can get in there'. So they thought biopsy on Monday so we could find out what this thing is.  He was coming to talk to us and then we could go HOME.  OH what a word.  So we waited.,...for another 24 hours! They said he was worth the wait. 

symptoms and admittance

The first weirdness I noticed was one week ago, last Sunday.  We always do yoga on Sunday afternoons and my balance was totally off. I was falling all over the place. Always to the left!  I also noticed that my left eye felt like it was straining - the only way I can describe it is that when I'd move my eyes I could feel all the muscles in my left eye working to move that eyeball, it was very strange.  Also if I looked far to the left it was blurry.  After a long day of work on Monday I had total double vision.  It was a binocular issue as long as either eye was closed things were single.  Monday night I made Ben take me to Torchys for dinner - let me introduce The Roscoe (taco of the month for March! get one while you can!)

OK you knew I had go get some food in here somehow right? The evil geniuses at Torchy's have outdone themselves - waffle, fried chicken tender, bacon, fried egg side of maple syrup all wrapped up in a tortilla for easy portability.  sooo good.  we also had queso (required) and I told ben it tasted bland -symptom #3, dulled sense of taste - you  can imagine how that tortures me.  Tues and Wed were about the same, when I got up Thurs I also noticed the left side of my jaw, lips and tounge felt numb, like I had been to the dentist and the novicaine was wearing off.  Fun. 

Went to see Dr. Stonecipher my primary doc on thursday morning (we were off for easter break.) He said best case it was shingles! But zoster is hard to diagnose so we had to rule out more serious stuff like brain tumors,blood clots and MS.  So he sent me to Seton hospital ER for a full work up and MRI to check out my brain.
I'm not gonna lie, the idea of getting to see pictures of my brain was pretty exciting to this scientist. They did the full set of MRI tests - I was in the tube for about 90 minutes!  Pictures were cool except for the little bright spot on the right side of my thalamus that shouldn't be there.The arrow points to the thalamus, it's not my thalamus that's Wikipedia's thalamus, but you can see that it's in a pretty inaccessible part of the brain, way down there in the center.So yeah in my right thalamus there is a lesion,  an abnormality,  something that shouldn't be there in this most important relay center in the brain that controls just about everything.  The ER docs and neurologists didn't know what it was and the options were not very appealing - infection (unlikely because i had no other signs), tumor or MS.  They needed to admit me to the hospital for more tests and to start some occupational and physical therapy to be sure I could get around on my own. 

fall risk

My first foray into blogging.  I'm sure you too thought this would be about food, cooking and feasting, and not about hospitals, brains and rehab.  I'd rather give you the former but feel I need to give you the latter. 

So why fall risk?

When I got admitted to the hospital from the ER (see symptoms and admittance post below) they out fitted me with this snazzy bracelet which just cracked me up.  I've always been a bit of a clutz (as many of you can attest to!) - my dad lovingly called me Miss Grace when I was a kid and I've always held fast to that term of endearment.  Then as my best friend Becky pointed out what a great way to make me feel young again!  But in a more metaphorical sense it is also appropriate.  I am seriously a control freak (ok don't everyone suck in your breath at once in shock!), and as such falling, or letting myself fall or have the appearance of falling is a real perceived risk to me,  I want to be in control of me, I don't want to need help from anyone else mostly because I don't want to be a burden to anyone, I don't want to worry them or cause them pain.  I want to be the care taker not the one needing care.  But the very few times in my life when I've had to fall and let others pick me up it is the most humbling, loving, overwhelming experience I've been privileged to have. Only 3 days into this adventure and I'm already experiencing the same.  Can't say I recommend the fall part but thank you to all you lovely people for being there to pick me back up.