Happy Halloween

As Halloween approaches, a mere three days away, I realize that I don't actually have to wear a costume this year to greet the Trick or Treaters. Yep, I can just put on my eye patch and give 'em a big smile (okay, a big half-smile). How much you want to bet that I can scare the stuffing out of some of the kids?

Willie is leaving Friday morning for the last race of the year - a 12-hour endurance race at Virginia International Raceway. I will be staying here in NJ to scare the kids and keep the home fires burning, so to speak. In preparation for the race, Willie bought a mini-bike. What, you ask, does that have to do with racing? Good question. Apparently, the HeManRacing team are concerned about walking from the pits to the "grid" so they "need" a mini-bike to transport themselves. Hey, back in my day, we rode our damned bikes!! No motors... Well, men need their toys, I guess.

It is currently doing something truly evil outside - something that the illustrious weather folks call a "wintry mix" which is code for snow and freezing rain. At the moment, it is more of the former and less of the latter - meaning that some of the snow is actually accumulating on the ground. What a mess. I think the animals have the right idea - the cats are curled up napping and Carrie is cozy in her crate while I sit here at my desk. Who's the smart one here?

Last Saturday, Willie and I attended the Acoustic Neuroma Assn's New Jersey mini-conference in Summit, NJ. It was a half-day event with speakers from both the medical community and the patient community. Very interesting. I also got to meet some of my fellow patients (Joe, Nancy, Catherine, Patricia and Mickey) which was an extra treat. It is very helpful to connect with other folks who have gone through this to compare notes and, in some cases, commiserate. Kay and Lorenzo, you know what I mean. Willie and I are planning to attend the ANA national conference next August in Chicago, where I expect to meet a lot of other folks who I've only met on the phone or online. For such a rare brain tumor, it's a very active and connected patient group. I can't imagine going through this without the support of other patients.

Well, those are my thoughts on this snowy, messy day ...

Almost Six Months

... since the great Boogerectomy! I can't beleive that six months ago I was making final preperations to check into NYU Med Center for brain surgery - wow! I kind of like to take stock every month to see where I am at in the recovery process. And, if they had told me after surgery that I would still be recoverying six months later, I would have been plenty pissed! However, life is what it is and you have to make the very best of it.

So, where am I at the nearly-six-month mark?
On the plus side...

My balance continues to get better, although when I am tired I still stagger around like a drunken sailor. No falling, though, which is something to be very pleased about!

I can now make a small smile with both sides of my mouth - nothing like my big smile of old, but a smile none-the-less!

I have a lot of movement in the cheek and central part of my face - very encouraging!

I am not overcome by fatigue as often now and get through most days without even thinking about a nap. Of course, I am sleeping 9-10 hours a night ... :)

I think my eye can close now!! It takes a lot of concentration, but Willie said that he could not see any "white" looking back at him last night when I tried to close it. Many Yippees on that!!

On the non-plus side ...
I have chronic pain in my neck and the side of my head. I am trying different things to combat it, from hot compresses to massage to drugs. I know it will get better over time. It seems to be muscle pain from where they pulled the muscle aside to open up my head.

Still no tears, which means that I am constantly having to keep my eye lubricated.

Still no movement on my forehead or chin, but the docs did say that that would be the last to return. The right side of my tongue is also still numb, although I am used to that now.

So, that's the current state of affairs in the post-brain surgery world on Tallyho Lane.

Update from Tallyho...

So, I have been remiss in posting this week.

I had an appointment Monday morning with Dr. Roland, who pronounced his approval of the improvement in my facial movement. We had a good talk about the ongoing and persistent pain I've had. The neck pain is most likely muscular, caused when they pulled aside that muscle to get at the bone and Ethel. I'll continue massage and warm compresses, plus an extended release pain med when needed. I also need to try to pay attention when I am tensing the shoulder and neck muscle on that side and try to relax them.

We also discussed the headaches and general head pain, which has gotten much worse lately. He thinks it is nerve-related, and probably an indicator that I am starting to get some sensation back in those parts of my head. I can live with that!

Meanwhile, in addition to massage, warm compresses, and pain meds, I am trying magnets (I know, might as well hire a witch doctor!). But, what the hell, they can't hurt!

Our friends, Ellen, Kura and Sean came out this weekend for our 8th Annual Apple Pickin' Weekend, which was a blast. Off we went to the orchard, where we unanimously agreed that we weren't really feeling like a wagon ride out to the orchard to pick, followed by schlepping our over-laden bags of apples back - - so we opted to do our picking right in the shop at the orchard! In addition to a great supply of freshly picked Granny Smith apples, we also scored a hot-from- the-fryer bag of apple donuts! Wahoo! Came home, opened some pinto grigio and set about baking a couple of pies. Followed by baked chicken with leeks and sliced apples with the proper accoutraments (the chicken complimented by a lovely bottle of Willamette Valley pinot noir.) A good time was had by all, as evidenced by the pictures...

Uncle Frank

While we were in OR last week, Willie's Uncle Frank passed away after a long illness. Although expected, it is still sad. Willie attended the services, which were on Monday. I thought I'd post a couple of pictures of Uncle Frank and Aunt Mary from our wedding 8 years ago. Rest in Peace, uncle Frank.

From the Land of Pinot Noir

Checking in from Oregon's Willamette Valley, home of world class pinot noir - and also of my mom and dad! Willie and I have been here since Saturday, enjoying the lovely cool fall weather and the rolling hills of endless vineyards. Of interest to oenophiles - the Dundee Hills in the Willamette Valley grow pinots second only to the great Burgundy region of France. Take that, Napa Valley!

I've been tottering about with my faithful human cane, Willie, and having a wonderful time. Getting weird little headaches which I will discuss with Dr. Roland when I see him on the 6th - for now, I'm just enjoying the vacation!

And because a picture is worth a thousand words, here are some to enjoy!

I did it!

I didn't fall, spit, or slur!! It was a completely successful workshop and I maintained a good energy level for the entire 6+ hours. I even survived the sandwiches for lunch - I desconstructed mine and ate it with a fork! Ha - more than one way to eat a tuna salad. I feel very pleased with myself and have already been asked to hold a date for this group's next event. Wahoo. To celebrate, Willie brought home a veggie pizza - cook's night off. I also had Willie take an update picture of my face. It is still going way too slowly for me, but at least I see improvement. I wonder how much of my smile will come back eventually.

Lorenzo and Kay - thanks so much for your kind words of support! Kay, when does your eye weight come out? And, btw, LOVED the pics on your blog about dancing in the rain!

Next Hurdle

So, tomorrow, I give my first public presentation since losing control of the right side of my face ... and I am nervous! It's a small group, but a long workshop (5 + hours,) and I am concerned about both my face and my energy. Okay, in short, I'm a bundle of nerves! Yesterday, my mouth wasn't working well and I was really having to work not to slur - horrors!

I have decided that I will open the session (which is all about communications and behavioral characteristics) with some amusing antecdote about brain tumors. I have NO idea what that will be, but I have about 18 hours to figure it out...

In addition to worrying about content, crooked smile, slurred words, nap attacks and wonky head, I am also concerned about what shoes I should wear. I know, how Imelda Marcos of me. But, really, I can't wear heels for fear of falling right off of them, so it will need to be flats. sigh.

Assuming I live through tomorrow, Saturday Willie and I leave for Oregon to visit mom and dad for a week. Willammette Valley, here we come! There's some Pinot Noir with my name on it ... or someone's name. Either way, I'll drink it. Dad just got his second eye "done" yesterday (not sure if he was gifted another plant or not?) so he'll be able to keep an eye on us!

More later...