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?

Catching Up

Well, this is the longest I've every gone with no update - shame on me! In fairness, though, I've been busy and the business has resulted in a head-on collision with fatigue (something I thought I'd left behind...)



The weekend before July 4th, we bought Willie a slighly used Mercedes CLK (which involved about 3 1/2 hours at the dealership - whew. We also had a great visit with our friends Soraya and Ilya and their beautiful adopted daughter, Mila. (And their two four-legged family members, Bart and Laska.)



We had a wonderful July 4th weekend which started with a visit from our nephew who is home from Iraq for a few weeks - along with he girlfriend Amanda, who we also love! The Bifulco clan descended and there was a lot of food and noise - a full body Italian event! We finished the weekend with a visit to the winery to figure out what blending percentages we want to use on our wine (which will be bottled in late August!!)



And while this was all loads of fun, I am afraid that it did take its toll on me. This is the first time in months I've felt completely fatigued. For those you you who don't know what this feels like, let me just tell you that it is unlike anything I've ever experienced. It is not the same as being tired - it's more like your entire body feels like it can't muster the effort to move. Really crappy. Anyway, I am feeling about back to normal now. And, I know that I still have physical limits - which I suppose is good.

For me, the danger zone is environments where I have a lot of auditory and visual stimulation and need to be interactive. To all intents and purposes, I don't have usable sight in my right eye (because I have to keep it heavily lubricated at all times which causes my vision to just be one great big blur) and of course I am completely deaf in my right ear. And, when I am in hi-sensory input situations, I think my brain just gets worn out trying to process everything with only half the tools. That's my best guess, anyway. Hm.


Ah yes, brain tumors - the gift that keeps on giving...

The Edamame Bean That Got Me

Working Title: The Bite Heard 'Round The World"...

So I found myself being very tired today. And, some of you know what happens when I get very tired ... yep, I stumble around more and I lose what little control of my lip that I normally have. It isn't pretty. I flatter myself to think that it's pretty funny, though - hence the post tonight.

Today I had lunch with my dear friend, Claire. Knowing that my mouth wasn't in top form, I wisely stayed away from pasta or anything with sauce. I ordered a nice safe piece of salmon, "sauce on the side, please." So far, so good. Things were actually going along splendidly when suddenly, out of frigging no-where, a piece of yellow squash flew out of my mouth, bounced off my lap and landed on the floor. I quickly stole a glance at Claire - yep, she saw the whole thing. I had a fast decision to make - pretend like it hadn't happened, or go ahead and laugh. Ah, what the hell - I chose laughter. Pretty soon we were both laughing. We needed it.

Then tonight, the Great Edamame Attack occurred. Drum roll, please. I made a healthy dinner of bulgur wheat (hey, Jen, you reading this?) with tomatoes, onions, lemon, olive oil and lots of fresh chopped herbs ... and Edamame Beans. (Scary music plays in the background.) Willie and I sat down to the dining table to share out days with each other and enjoy the healthy and sumptous feast I had prepared. Again, things were progressing nicely when suddenly an edamame bean jumped out of my mouth, hit my chin and landed back on my plate. Willie, of course, witnessed the whole thing. This time there wasn't even a pause - the laughter just started immediately.

I decided not to try my luck with anything else. The safest move at this point is to remove myself from the vicinity of the kitchen and retreat to the bedroom. G'night folks!

Taking Stock

Well, another week has flown past and it is nearly 14 months since the Big Brain Tumor Extraction, aka Boogerectomy. Wow, where has the time gone?

I must say that I feel good. Sure, I am still deaf in one ear, and have an eye that's lost its ability to tear, and I stumble sometimes, but I am GOOD. Have I made some necessary adjustments in the last year and 2 months? You bet. But we humans are adaptable creatures, aren't we? I know that my life post brain surgery is forever changed, which doesn't mean worse ... just different. And, sometimes different is funny, for example...

Luckily for me, Willie doesn't like to dance. Imagine if I had to deprive him of twirling be about the dance floor? But, Willie hates to dance and so this whole crappy balance thing has worked out great. I confine my dancing to places where I won't be seen, like the living room. And, just to be safe, I wear bubble wrap.

And, how about the entertainment value of tipping over in my garden? That's hard to beat, isn't it? Seriously, it's funny when you allow yourself to relax and see the humor. When I fell over in the mulch a few weeks ago, I was laughing so hard I was afraid I'd alarm the neighbors.

And, sometimes just to screw with people (in a nice way) I let my right eye just stay open and stare at them. C'mon, admit it - you wish you could do that, don't you?

Okay, how about when I was at Marshall's last weekend with my friends Kura and Peggy and I heard my name. I twirled around twice in the aisle trying to establish where the voice was coming from. It was Peggy and we both cracked up.

And, the other night when I woke Willie up at 3 in the morning because I couldn't identify the noise I was hearing (turned out to be torrential rain) and was worried that something was wrong with the house.

You have to find the humor. Most days, I don't have to look very far to find it. So, any stories you'd like to share in this vein??

Springtime in NYC (96 photos), by Deborah Bifulco

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