Sunday, January 25, 2009

A Night of Firsts

Well, last night was another milestone! Willie and I went to the County Chamber's annual black tie dinner dance (picture as proof that we clean up well). And, for the first time since surgery (nearly 9 months ago), I wore heels AND mascara!!! Some of you may be shrugging and rolling your eyes - and if so, I'm thinking that you haven't had brain surgery or aren't particularly close to someone who has. This is big - huge, I tell you!

I had to make a few comments at the podium, so I very carefully made my way up there without falling or stumbling - it helped that the podium was only about 12 steps from our table (thank you, Tammie). I got a standing O, which was very nice and rather humbling. I gave my brief comments without spitting or slurring and made it back to the table without mishap.

I even got Willie out on the dance floor! It was a slow dance, of course - no sense being really stupid and trying the hurl myself about the floor while maintaining a vestige of pride and integrity.

The downside was that there was a DJ and blaring music most of the night, which was predictably exhausting. Also, very difficult to engage in any sort of meaningful conversation - probably difficult even with two good ears. However, we were seated with my fellow board member, Deb Freiligh, and friends Tom and Claire Caines, so we managed to have some meaningful conversation. We hung in for 3 hours before I whispered in Willie's ear that it was time to take my hearing ear and leave.

I feel good!

Tuesday, January 20, 2009

NMFR Update

Well, I am getting ready to settle in and watch our 44th president get sworn in - actually, I will be watching a bit of American history in the making. Pretty exciting!

Willie and I spent the night in NYC on Sunday - thanks to an old (she's not old) friend who manages the beautiful Alex Hotel on the East side, we had great digs for the night. Had drinks with Nance and Phil (one of my brain tumor buddies) and dinner at one of our favorite spots in the West Village - Cafe Brusselles - where I dined on my favourite Moules (mussels) Provencale.

Had breakfast with my friend Mary Lou at the Alex then headed out to Long Island - way out to Long Island. Don, the NMFR, spent about 2 hours with us and it was great! He took so much time to show me what was working -and not working - on my face. He took Willie and I through each exercise multiple times, both with and without mirror. He helped me with the ones that are difficult. Like everyone, he cautioned patience, and reminded me that this process can take several years. It was good to have someone look at my face and see what I see. It is so nice when everyone tells me I look great; but I don't think people really realize how much of my face isn't working. This is one of those things that is hard to explain - but sometimes I need validation that I do still quite a bit of facial healing ahead of me. I don't mean this to sound like I want pity - I don't. But, it is disconcerting sometimes when people brush over it and minimize what I still struggle with. Not sure if that makes sense?

Don also gave me a vestibular assessment which I didn't do as great at as I had expected - so, he gave me some additional exercises beyond what I am already doing for balance. I still can't stand on one leg without teetering; and walking a straight heel-to-toe line is hilarious. However, I know that eventually I'll adjust and will be almost as good as new.

It was snowing like crazy when we left, so it took us about 3 hours to get home - yuck. However, it was well worth the trip and I am so glad I did this. This was probably the perfect time in my healing to see the NMFR.

Meanwhile, Hail to the Chief!!

Saturday, January 17, 2009

Frigid Days

Me again. It's been a busy week - finally decided to get off my butt and start seriously figuring out web 2.0 for my business. And, as with all things on the internet, one path leads to another, and another, and another... But, I am learning SO much! I submitted an article to ezine articles this week about the coaching lessons I've learned from my brain tumor, and started a coaching blog on the same topic. If interested the article is at and the blog is at

And, of course, we are having record cold temps here in the NYC metro area -we awoke to a brisk 5 below 0 this morning (okay, I mean it - you stop laughing this instant, mom and dad!). Thank goodness it is Willie's job to walk Carrie in the mornings!

Tomorrow we are heading into the City - hopefully it will warm up at least a little. We're meeting a friend of Willie's for a quick visit in the afternoon (one of his racing buddies) and then meeting Nance and Phil (Nance is a fellow acoustic neuroma buddy, same surgeons) at their apartment in the Village for a glass of wine. Willie and I will grab some pasta somewhere in the Village after that, then return to our room at the Alex (compliments of my friend Mary Lou who is the manager there!). Monday, we head out to West Islip for my Neuro Muscular Facial Retraining (now do you see why they just call it NMFR?) visit. Kind of looking forward to getting the next step underway.

I'll post again after the appointment to let you all know how it went.

Stay warm!

Saturday, January 10, 2009

The AN Bruch Bunch in NYC

Here is the photo of our AN lunch/brunch today in NYC - we had a blast! Willie was totally amazed at how much noise we made! From left - me, Eve, Mike, Rob, Joe, Neal, Pat, Wendy, Catherine, and Nance (Willie was manning the camera. so just imagine that he's there next to me!) Willie insists that the picture is blurry because we were all swaying, but I think it was an operator error...
Anyway, it was a great time with lots of laughter - even from Neal who is just slightly more than 2 weeks away from surgery! Gee, last time we got together, it was Wendy who was on the final countdown...
It is funny how this crazy, rare brain tumour has brought so many unlikely people together. It makes me realize how random the world is, while at the same time how there is a feeling of fate, or Kismet, about it as well. I found myself looking around the table and thinking how amazing it was that I met these people - had I not been diagnosed with an acoustic neuroma, my path would never have crossed with any of them - and look what I would have missed. I know I am waxing philosophical here, but I am so very grateful for the people I've met out of this experience. Kay, Lorenzo, Angie, Wendy, Nance, Joe, Catherine, Eve, Sara, Jules, Jan, Lori, Brian, Cheryl, and the list goes on and on.
I am now back home, watching the snow pile up - a big weather system has moved in and we are expecting up to a foot of snow! I was actually a bit concerned about driving back and forth to the city today, but it was SO worth it!
My heart is full.

Thursday, January 8, 2009

NMFG Appointment

Oh, that's a catchy headline, isn't it?

Well, I have scored an appointment with an Neuro Muscular Facial Retraining specialist at Good Samaritan Hospital in West Islip (Long Island) which is several hours drive from here. The good news is that I got the appointment for M. Luther King's birthday, which is a holiday for Willie, so he can drive me (lucky him!)

It will be good to have someone who is trained in this specific type of facial problem take a look at me and guide me through the right way to do the exercises - and what exercises are appropriate for my stage of recovery.

People who meet me for the first time would not know that anything is wrong. However, I know and that is what matters. And, since it looks like I am continuing to get movement back, albeit slowly, I want to really do all I can to prevent any serious synkinesis. So, off to the NMFR I go!

Meanwhile, yesterday was Ice-Hell in my little corner of NJ. Willie took my 4-wheel drive to work, which was just as well, because I couldn't get out of the house anyway. Everything was a sheet of ice. To get poor Carrie out, I had to take towels and sheets and lay them on the porch to make a slip-free path to the yard. Why am I living here again??? (Okay, Mom and Dad - quick laughing! I can hear you!)

Tuesday, January 6, 2009

Dimpled Chin

Well, here it is, January 6 already! Willie and I had a quiet New Year's Eve over at our neighbors where we enjoyed a nice dinner, conversation and some great wine. I, however, was asleep by midnight! I take solace in the fact that when it was officially midnight in Ireland, I was still awake !

In spite of my good news from my Dec 22 visit with Dr. Roland, my face seems to be taking on the New Year with a mind of it's own, complete with the dreaded "inappropriate" movements. It's very minor at the moment -the right side of my chin dimples in when I try to smile with the right side of my mouth. My right upper lip remains slightly elevated all the time, looking a bit like a wimpy snarl.

The spontaneous dimpling is an early sign of synkinesis and has just shown up this week. The lip snarl is most likely a hypertonic muscle spasm. I emailed Dr. Roland and he suggested that I should try to make the trip to Long Island to see the NeuroMuscular Facial Retrainer there - sad that this is the closest facility for me and it is over 100 miles away. So, I started that process today - made the initial phone call and am now waiting for a return call to schedule the appointment. I am hoping that I will only need to go once, just to learn the correct way to do the various exercises and facial massage. Well, as frustrating as this is, it beats the heck out of a brain tumour!!

Meanwhile, we are bracing for yet MORE snow!! Lorenzo and Kay, I'll be happy to send you some. Better yet, I'll move! I like Texas and I've been wanting to visit Ireland...

Well, more later...