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.