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.