Ceepy Crawly Things

Every year it seems like we get some plague-like invasion of some sort of multi-legged creature here on Tallyho Lane. One year, it was the Japanese Beetles which rose in a terrifying cloud from the depths of our lawn just in time to eat every expensive shrub in sight. Then we had the Gypsy Moth Caterpillars - again, arriving just in time to eat all the replacement shrubs. And, then there was the year of the Giant Cicada Killer Wasps (if you think I am kidding, Google it!). They didn't eat anything but they scared the hell out of us and tried to excavate our walkway to build dens for their hideous off spring.

Well, this year we have been overcome by slugs, spiders and something that I can only imagine is a huge millipede. There were three humongous (translation - really, really big) spiders dangling from the garage door when I opened it today. I tried to kill them all with ant spray (hey, it was all I could find) - got myself worked into such a killing frenzy that I lost my balance and nearly tipped over. At which point I would have been face to face with a three inch millipede that was making its way speedily across the garage floor. Eeek! These millipede thingies are about as big around as a #2 pencil, up to 3 inches long, and appear to have some sort of hard, segmented shell. Euw.

And, can anyone explain to me how it is possible for a spider to cast a horizontal strand of web across a 10-foot span? Do the little suckers have wings now? Do they hang off a wall and just hurl themselves sideways? Are they immune to gravity?

All this constant looking over my shoulder (and under my feet, and above my head...) is playing havoc with my already iffy balance. Lorenzo, can you please send autumn across the pond so that all these things will die or hibernate or whatever it is that they do?

Meanwhile, I am hiding in the house with a can of bug spray (which, incidentally, has NO effect on the millipede thingies...) If you don't hear from me again, you'll know something got me...

Reflections on Faces

I just returned from the ANA symposium a couple of days ago and am feeling very inspired. The event was great - from an educational standpoint and, even more, from a personal standpoint. It was such an amazing experience to be gathered with so many other people who share this rare diagnosis. There were people there who were recently diagnosed and those whose treatments are long done, and those who are "watchfully waiting."

One of my personal goals for the symposium was to learn more about possible treatments for facial palsies/paralysis. I certainly came away with much to think about, from botox to bang-tox to surgery. I have not mentally sorted through all of it yet, but I have been giving a great deal of thought to the whole issue of how much of our self-perception is tied up in how we think we look. So, bear with me while I "think in writing"...

I attended a dinner the first night specifically for people with facial issues. As I looked around the room (there were probably 50 or so people there), there were very few who I would immediately identify as having facial complications. But as I talked to people, I realized that many people really struggle with the fact that they (we) look "different" than they(we) did before. I listened to one woman who was clearly depressed who felt that people stared at her when she was in public. And, yet, when I looked at her, all I saw was the tiniest bit of asymmetry - nothing that I would ever notice if I didn't know what I was looking for.

And that got me to thinking about myself and my own self-perceptions. I know I don't look quite like I did before, but I also know that no one is staring at me in horror and running in fear. In fact, I have concluded that people who don't know what to look for wouldn't know anything is wrong. Like many of the people I met at the symposium, my mouth pulls to one side a little when I talk, and I have a weird dimple on the right side of my chin when I smile, and one corner of my mouth doesn't smile quite as big as the other side, and one eye squints up just a little sometimes. But seriously, have you ever seen Cat Deeley on "So You Think You Can Dance?" That woman is drop dead gorgeous, but when you look at her face - her smile is totally crooked, one side of her nose pulls over, one eye squints a bit ... And I suspect that is just the way God made her. (The fact that she is tall and skinny doesn't hurt, but still ... she's beautiful!)

Hm, it gets you to thinking, doesn't it? And, then I got to thinking about the people who have more serious facial issues and have gone through multiple nerve grafting surgeries to get a small amount of movement - and I have to think "Damn, girl, you've got nothing to whine about." Which is not to say that I won't occasionally feel sorry for myself or miss my "old" face a bit, or that I won't consider options for improvement. But I will also recognize that most people who look at me won't see anything wrong.

A lot of the aftermath of acoustic neuroma surgery is invisible to the outside world - deafness, equilibrium issues, numbness, blurry vision, fatigue. Which doesn't make any of those things less real - it just makes it harder for other people to understand.

And as my beautiful friend Kay would say - "When life gives you lemons, squeeze it in someone's eye and haul ass!"

Week From Hell

Why is is that the week leading up to any vacation is sheer hell? I've been busting my butt trying to get a HUGE project done before leave this Friday. On top of that, my hormones (cover your ears) have chosen this week to mount an attack on the host body (that'd be me). And, not to be outdone, my face has decided to be more difficult than usual (complete with droopy eye) and my balance ... well, what can you ever say about that?

I'm off to see my doctor this afternoon to see about a temporary fix for the hormonal rages; meanwhile, have started going out for a very brisk walk in the woods every day. We have some wonderful wooded parkland near us, with lots of trails and meadows. Today, I threw in a little mid-walk yoga - picture this ... tree lined pasture, lake in the distance, flock of wild geese rustling about in the tree line, peace, quiet, serenity, me doing a perfect sun-salute, getting ready for a near-perfect warrior pose. When - VRROOMM. A friggin' lawn mower/tractor lurches into my pristine moment!!! Great. Impossible to execute a flawless downward dog while sticking a finger in one ear to block the zillion decibel noise. Hrmph. Little did the guy driving the thing now how close to death he actually was - imagine engaging a middle-aged, hormone crazed woman out in the wild with no witnesses. Lucky bastard.

Friday, whether the work is done or not, we are boarding Continential Airlines and heading to the Windy City! Flurries of emails have been flying back and forth amonst the ANers whilst we decide what to wear, where to meet, what to see, etc. And I am trying to see if Willie and I can squeeze in a dinner at Frontera Grill - one of the all-time world class restaurants. Rick Bayless is one of the great American chefs and his food is sheer joy.

Well, back to work...

My Attempts to Poison Tallyho Lane

Some things have nothing to do with brain tumors and yet are funny (and potentially life threatening...)

Yesterday I decided to take my bread-making prowess to a new level by making Pumpernickel bread. As an aside, did you know that there is no such seed, nut or flour called pumpernickel? What makes it pumpernickel is unsweetened bakers chocolate (powder). Hm.

Okay, so back to the story... I use the bread machine to make the dough, then remove it and let it rise twice, first as a glob and the second time shaped into a nice loaf or baguette. Loaf in this case. Things were progressing nicely, and the loaf was at the perfect level of "rise" to pop into the oven. Donning oven mitts, I slid the loaf in to the hot oven then headed upstairs to do something. About 5 minutes later, I started to smell something really awful. And, by awful, I mean horrendous.

I ran downstairs and whipped open the oven door. Of course, I had just put gel drops in my right eye, so I really couldn't see a damned thing. But, there DID appear to be a glob of something right on the lower edge of the oven bottom. It was bluish in color. At first I thought it might be one of those soap-impregnated blue steel wool pads (except that I don't have any of those and even if I did, how the hell would it have gotten into the oven. ) By now the smell was so toxic that I snatched the bread out of the oven, half baked.

On closer examination, I saw that the bluish blob had a dark center. Aha! It was the remnants of a blue kitchen magnet that I hung the oven mitt on! Apparently, when I donned the mitt, I didn't realize that the magnet thingy was dangling from it and apparently it dropped into the oven (which of course I didn't hear, being deaf on the oven-side of my head!)

I won't go into the details of how I chipped the gunky mess off the oven. However, I will tell you that the taste of melting plastic had totally permeated the bread so I had to throw it out and start all over again. Ugh.

As we speak, I am letting the oven run through its self-cleaning cycle. It smells awful. I am sure I am killing brain cells. If you are in NJ and you are reading this, you should probably leave the state!

Busta Rhyme

No, I haven't gone to the dark side. However, I have named one of the backyard hummingbirds Busta. Why, you ask?

Well, every year, I put out hummingbird feeders because I enjoy seeing the tiny creatures buzzing around. We have two pairs who seem to return each year (believe it or not, they migrate from here to Florida in the winter!). The season always starts out slow, but by about this time, things between the resident hummingbirds usually gets a bit tense. Turf wars break out, and drive-by's are a daily occurance.

Yesterday, one of the males decided that the entire patio was HIS. He took up residence on the back of one of our patio chairs, strategically placed at the center of the area with a clear view of patio and surrounding flower beds. He then proceeded to puff himself up (which is hilarious all by itself when you figure he weighs maybe an ounce and is less than two inches long) and started bobbing his head in a very menacing fashion. With his bright green back and vivid red neck I thought he looked like a gansta rapper - hence the name!

Every time another hummingbird dares to visit one of the feeders or ANY of the flowers, Busta launches a fierce and noisy aerial attack. It's pretty funny sitting out there, because I can hear is the buzzing of wings and the little attack-chirps - I have no idea what direction they are coming from, of course.

Ah, nature, ya gotta love it!

Countdown Begins...

So, only four weeks until the Acoustic Neuroma Symposium in Chicago and I am getting excited! For me, the symposium represents, in equal parts, social stuff and educational stuff. Since I no longer have a need to know what my "treatment options" are (LOL) I'll just skip those sessions - and that is where the socializing comes into play! There is quite a contingent from the Acoustic Neuroma Forum headed to the symposium including many who given me so much support over the last nearly 1 1/2 years - and I can't wait to meet them all.

From an educational standpoint, I am looking forward to attending some of the sessions on hearing loss and facial and balance issues. Even though my recovery has been quite good on all levels (well, not withstanding the deafness thing...), I do have a few ongoing challenges with face and balance, so it will be good to hear what the experts have to say. And, equally good to hear what some of my fellow patients have experienced!

Kay, can't wait to meet you in person - got a big hug for you! Lorenzo, are you SURE you can't make it to Chicago? This really won't be a full on party without you. I'll bring the Prosecco...

Okay, now it is time for me to get back to work. More later...

Things

Not a very creative title, is it? Too bad. I'm tired and just couldn't come up with anything more creative at the moment. I reserve the right to change it later ... or never ... or whatever!

It's been a brain-tumor themed week. Saturday I joined the NY/NJ group in NYC for our now twice-annual brunch at Brendan's. The group was a bit smaller than last time - only about 8 of us - but you would never have known that from the noise we created. Pretty funny when a group of mostly SSD people get together and all start talking at once! Last time we met, Neal was only a few weeks from his surgery, so it was great to see him now at several months post surgery. He looks great - great big smile! In fact, as I looked around

the table, I realized how terrific the whole bunch looks. Well, heck, don't take my word for it - here's a picture! Mike and his wife are on the far left - Mike's a Wait and Watch and goes to the same docs as me. That's me in the orange shirt. Behind me is Joe, also a Golfinos/Roland patient and had surgery in Jan 07. Then Wendy and Neal (July 08 and Feb 09, respectively.) Catherine, Nancy, and Eve weren't able to make this lunch, but we hope they'll be around for the next one.

Monday I had my visit with Dr Roland for follow up on my facial nerve function. As I approach the 18 month mark (November) it's time to start talking about what's next. I've regained probably about 80% of my nerve function, but progress has been at pretty much of a standstill for the last few months. I still have hyperactive muscles in my right cheek which causes my upper lip to pull up - this has been like this for over six months, so it probably won't go away without some help. Right eye still blinks less often than left, and no sign of tears. Lower lip just isn't cooperating and is still pretty useless.

So, when I go back in December we'll start talking about medical botox (freaks me out) to relax the muscle in my cheek, which will allow my mouth to look more normal at rest. I can also consider a shot to the chin which would get rid of the spontaneous dimpling that occurs when I smile or blink (some synkinesis, probaby). He said that the results usually last about six months and frequently need to be repeated multiple times for persistent facial issues.

The lower lip is a bit more of a challenge and if it doesn't come back I can consider surgery to graft some nerve. Dr. R suggested that I use the time at the Acoustic Neuroma symposium (Chicago in August) to investigate some of the newer treatments. This will give he and I much to discuss when I see him in December.

I am feeling some conflicting emotions at this point. Dr. Roland says that I am in the small minority of patients with a tumor in this size range who have long term facial issues (something like 5%). He bases this on his own stats in doing this surgery for so many years. I kind of wish I wasn't in this elite little percentage, but I am also reconciled to it for the most part. I am so used to using drops all day, every day, that I don't give it alot of thought. Non moving eye-brow? Not a big deal and I honestly really don't care about it. Lip/mouth? Well, that's more of a concern to me. My question for myself - is it enough of a concern to swallow my fear about botox injections? Would I consider a surgery to correct the lower lip function? Hm, something to ponder. I will spend the next four or five months reading and researching and talking to people. There is certainly no rush.

Any comments or experiences that you'd care to share with me?