Deb's AN Adventure

2012-01-18T12:19:00.000-05:00

I've been absent around these parts lately ... not because anything is wrong but because I've been busy. As I mentioned in a previous post, I have been pursuing my passion for photography during the last year. Lots of fun, lots of new learning. I joined a photo community called Blipfoto where I post my favorite picture each day. My personal goal is to post a picture for 365 consecutive days - I'm halfways there now. The photo's to the right of this blog are the 3 most recent pictures. If you click on the filmstrip, you'll be taken to my blipfoto journal where you can read a bit, see some pictures, whatever. Lots of very talented photographers over there, so enjoy yourself!I am coming up on my 4 year brain-tumor anniversary - holy cow! Hard to believe it has been nearly 4 years. I sure never expected some of the long term effects of this whole adventure. However, it's not all bad, and I've made some great friends along the way ...

Birds and Brain Tumors

2011-10-25T15:22:00.001-04:00

I used to love watching birds. In fact, I had bird-feeder central when I lived in St. Louis years ago. Then, I moved a few times, got busy, moved to a part of the country with seed-eating bears and ... well, then there was that pesky brain tumor thing.

Anyway, about a year after I had surgery, I decided that I wanted to take up another hobby - photography. I bought a kick-ass digital slr and started relearning everything I ever thought I knew about photography. Then, this year, in my quest for more things to photograph, I suddenly thought ... BIRDS! And, we live right on the edge of the forest, so it is bird-bonanza. Willie accuses me of never doing anything at less than 1,000 miles an hour. And, because I never want to disappoint that man, I went out and accumulated about 3,000 bird feeders and a couple of tons of seeds. Yep, bring those birds on! (slight exaggeration, but I believe in literary license.)

You'll remember part of my brain tumor legacy is that I am deaf on the right side. Good news is that my left ear hears things really well. Bad news is that mono-hearing means no directionality. Good news - I can hear those birds singing and chirping the minute I walk out the door. Bad news - I have no freaking idea where they are. Life's funny isn't it?

Chirp.

Jackie Diels and My Smile

2011-09-29T15:56:00.000-04:00

Instead of a New Year's resolution, I am making a fall resolution - to blog more often! I've been horribly remiss this summer, not because there wasn't a lot going on, but maybe because there was TOO much going on.

Anyway, I started my day off today with a video chat with Jackie Diels, who is (in my opinion) the BEST facial re-trainer on the planet! You may recall that I went to visit Jackie 18 months ago pictures here. I was so blown away with what she was able to teach me that I went to her six months later for a follow up visit. By the way, she is in Wisconsin and I live in NJ - so that tells you how great I think she is! The improvement I've seen in my face, and especially my smile, is amazing. My smile won't ever look quite like it did pre-brain tumor, but I am pretty darned happy with my "new" smile. And, for that, I have to say "Thank you, Jackie Diels!"

If anyone reading this wants more info, please shoot me an email or message me from here.

I'll be back soon with another update!

Photography and Acoustic Neuromas

2011-08-19T10:00:00.001-04:00

Is it really already the middle of August? I saw a few yellow leaves drifting slowly to the ground yesterday which can only mean one thing ... fall is just around the corner. Yikes.

You may remember that one of my post-brain tumor gifts was rediscovering my love of photography. I bought a good digital SLR and started learning the world of digital photography. What fun it has been! This summer, in particular, I've been really pushing myself to learn new techniques and to find interesting things to photograph. Lots of fun.

The only minor aggravation is that, as those of you with balance impairment know, if I don't look at the ground where I am walking, I tend to tip over. Well, now, think about that for a minute... if I am looking all over for the next great Kodak Moment, I can't very well be watching my feet, can I? And, keep in mind that I don't really see anything other than a big, fuzzy blurr from my right eye in the best of conditions. Now, I've had over 3 years to get used to this whole balance/vision thing so you would really think I'd be better at it. Based on the flailing and careening I've been doing lately, I'm going to have to say that the balance still needs some work. Ah, the sacrifices we make for our art...

By the way, the humidity is wreaking havoc with my hair, too. See how frizzy it is?

Why Shampooing Can Be Dangerous...

2011-07-26T08:27:00.001-04:00

We have cats. And, being cats, they like to toss out the occasional hairball, usually in a place that has the highest visibility or is the most heavily trafficked by human feet. So, one of our angels barfed up a hairball on the stairs (carpeted in off white, need I say more?) I carefully teetered on the stairs and used a little carpet shampoo-er to clean up the spot. Returned the Little Green Machine to it's home in the upstairs closet and then proceeded back down to go about my day. One minute I'm on the steps heading down and the next minute I'm on my back heading down. You see the problem, right?

So here is a note to my self... NEVER wear rubber soled flip flops on wet stairs. N E V E R. No bones broken, but my dignity took quite a beating, and look like I've gone a couple of rounds in a boxing ring.

How's your day?

Genetic Stapling

2011-07-19T11:42:00.000-04:00

I am going to start by apologizing to my hubby - sorry, babe, I couldn't resist.

We've recently moved my in-laws to a new home in a new state, which involved packing up their worldly possessions. What we came to realize is that my mother-in-law really likes staples. I mean she REALLY likes staples. So sorting through her paperwork has involved pulling a lot of staples out of clumps of papers. We've kidded her about it and accused her of never meeting two pieces of paper that didn't deserve to be stapled together.

So, we all had some laughs and life goes on. Right? Well, maybe not... Last week I was overcome with an urge to clean up some of our old files. I decided to start with bank statements from 10 years ago. What I quickly remembered is that my hubs (love you tons, honey) likes to save ALL the old ATM receipts. And, let's face it, there is NO reason on earth to save ATM receipts for years. And, not just save them, but staple them to each other and to the bank statements - with HUNDREDS of staples. I sprained all of my fingers and broke three staple removers ... and that only got me as far as 2007.

Yes, folks, apparently stapling is hereditary, some sort of strange gene mutation. I only hope it's not contagious.

What Happened to Me?

2011-07-09T13:24:00.000-04:00

I used to be cool. Before my hubs swept me off my feet and moved to the Jersey "burbs," I lived in Mid-town. (Manhattan, of course, because it's the epicenter of cool.) I still retained my essence of coolness out here in the wilds of Jersey. I dressed in "cool" country-chic. Well, okay, I dressed in Levi's, but still...

Then along came this annoying brain tumor and I ended up with a funky eye that doesn't make any tears. Hence the globs of goo in my eye at all times. All the goo creates a hell of a glare, so bright light really hurts the peeper. Sun glasses are a must. So, I quickly purchased prescription sunglasses, but it got incredibly annoying constantly switching between regular and sun glasses. Then, one day, in a fit of utter madness, I went online (because it'd be too embarrassing in person) and ordered ... Fitovers. Yes, you know what I'm talking about. This is what the seniors in Florida wear.

I've tried my best to make these cool, but no matter how I cut it, I look like a bug with giant shiny eyes. I'm terrifying. I am wondering if I should dye my hair blue. What the Hell happened to me, and has anyone seen my "cool?"

Every Day

2011-06-22T14:16:00.000-04:00

I stopped in the acoustic neuroma patient forum the other day and was catching up on old friends, saying hi to some newly diagnosed people, when I read a post that kind of got me to thinking. The post was from a guy I respect very much who had a massive tumor removed a few years before I entered the brain tumor scene. He is always able to articulate so well what sorts of things "newbies" could expect, and always does it in a way that isn't frightening. Well, okay, I know that there really isn't anything about a brain tumor that ISN'T frightening - but you know what I mean!

The comment he made was "It is not something you 'get through', recover and move on as if it never happened. Even with the best outcomes, as I experienced, a few 'reminders' are still part of my life." It got me to thinking...

Most of us in this little club have moderate to total hearing loss on the tumor side. Not something other people can see, but something we all have to make accommodations for every single day. In my case, I get up in the morning and snap a little metal box onto a metal rod that is implanted in my skull. Great to be me.

The unlucky few who have permanent nerve damage may start their day, as I do, with a blob of lubricating gel in the eye to keep it from drying out. And, those are the same people who have a blast of panic when they realize that they've left the house without eye drops/gel.

Mind you, I am not complaining. There are SO many people dealing with much worse things every day. But, I do sometimes long for my "old" life, the one that didn't involve bionic ears or eye gel. Just sayin'...

It's All a Matter of Balance...

2011-06-01T16:42:00.003-04:00

I remember before I had surgery, the surgeon told me that I would be likely to experience "disequalibrium"... And, I thought to myself, "disequal-WHAT?" Basically that is just a fancy way to say "sorry, kid, your balance is going to suck."

Most of the time, I actually do quite well. I've adapted to having only 50% of a normal person's ability to balance. For example, I don't try to walk around in the yard in the dark, I always use the railing when I'm on stairs, and I have night lights strung out all over the house. Works pretty well. I know that when I am tired, I have to be more careful, and that when there is a lot of sensory input happening, my balance will get much worse. So, where am I going with this?

This past weekend, the hubs and I went to the Bronx Zoo. We both needed a diversion and it was kind of like a mini-vacation. Now, if you've never been there, it is a huge place with lots of indoor and outdoor exhibits. Well, we got out little map and headed out on our grand adventure. One of the first things on our map was an exhibit called "Madagascar" - whoa, cool! In we went.

Now, let me set the stage. The floor was made out of some sort of rubberized material which gave it a slightly squishy consistency. It was dark (simulating night time, I guess). It was REALLY crowded. And, it was REALLY noisy. You with me so far? Uneven surface, dark, and mega-sensory input. All of a sudden, my world felt like an amusement park ride. I grabbed Willie's arm in a death grip, while trying to dig my fingernails into the fake rock wall on my other side. I experienced a fear-induced blast of adrenalin, and a strong desire to claw my way to safety. Happily, we made it out upright and intact. Well, other than the hubs' dislocated shoulder from where I tried to wrench his arm out of its socket.

I am happy to report that the rest of our day was spent upright and oriented - and did not include anymore dark exhibits. Sorry, no bat house. And, no Mouse House, either. Nope. Strictly large mammals for me. Large outdoor mammals.

Single Sided Deafness - Glass half-emtpy or half-full?

2011-05-24T13:57:00.001-04:00

I was getting up on the Acoustic Neuroma patient forum today and came across a link for a very well-written essay on single sided deafness. I think this is a good read for anyone who is SSD, as well as those who have the pleasure of living with those of us who are SSD. Enjoy...

http://tribalvillages.org/deaf-essays/single-sided-deafness.html

BAHA - Ha Ha

2011-05-12T09:32:00.000-04:00

First, let me say that I am very, very happy with my new digital ear! It is interesting that when I am wearing it, I don't even notice that I have it on. By that, I mean that I don't consciously "hear" anything differently. But, there are times when I am struck with the sudden realization that I am hearing something that I never would hear without the BAHA. Case in point - I recently had a group of my girlfriends over and we were all sitting around the dinner table talking. And, let me just say, they can talk a LOT. Well, everyone was talking at the same time, which is usually death for me since all I hear are random words. As I was sitting there, I suddenly realized that I could hear the friend on my deaf side PERFECTLY! That was one of my big (B)AHA moments.

And, of course, as with all things brain-tumor related, there are also funny moments... I was recently putting some things in the back of my little SUV and as I was leaning in to set something in the back, my head made contact with the door of the car and - WHAM - off my BAHA flew! It hit the pavement and rolled under my car which triggered some extremely colorful and inventive language from me. Down on my hands and knees, I retrieved the little guy and, with heart in throat, attached it to my head. Success!! It was none the worse for hitting the ground at maximum speed. Now, that said, I don't suggest that anyone start hurling their BAHA around with reckless abandon.

I am currently helping to rehab my in-law's 40-something year old house, which is providing all kinds of interesting balance challenges. The miracle is that I haven't fallen into a paint tray yet. But, there is still time...

Happy AN-niversary!

2011-04-30T09:43:00.002-04:00

We are currently in the middle of renovating my in-laws house, after relocating them to Huntsville, AL two weeks ago. So, I woke up this morning aching in just about every part of my body, thinking - "wow, I feel like crap." And, then it occurred to me that exactly three years ago today I was about two hours in to a roughly 6 hour brain surgery. Hm, that makes today's aches and pains feel a little less achy and painy. The TRUE definition of "feeling like crap" is when you wake up in a noisy recovery room in a major NYC hospital, with a tight (really tight) pressure dressing around your head, pink "oops" tray nestled under your chin, another dressing on your belly, head swelled up to the size of the Goodyear Blimp, and tubes and wires hanging out of every part of your body. Yep, that will always and forever define "crap" for me!

Yep, that puts a good perspective things. Three years later, I am adept at avoiding balance-challenging situations, a master at the head-swivel to hear what people on my deaf side are saying, and relatively good at keeping food in my mouth where it belongs. I will celebrate the day by arming myself with paint and spackle and doing battle with "the house." Then, later today, I plan to open up a bottle of something nice (and, no, I'm not talking Coke, folks) and celebrating my AN-niversary! Care to join me?

Three Years...

2011-03-09T09:52:00.000-05:00

It is hard to believe that it has been three years since I heard those fateful words "You've got a brain tumor." I was diagnosed March 4, 2008. Three years ago, I was in a frenzy of researching and discovery. Things like craniatomies, neuro-muscular facial retraining, and bahas were completely foreign to me.

Now I am sitting here with a little digital box snapped on the side of my head, lots of titantium in my skull, a sometimes goofy smile and a few interesting scars. Holy crap. These are the things that come along in life that are completely unexpected and certainly game-changing.

As for me, I've had some ups and downs in the last 3 years, but I'd have to say that the ups outweigh the downs by quite a lot. When things like this come along in life, you really only have a few choices: you can adjust and find things to love (or at least like) about your new life, or you can sink into a vat of endless depression. Well, when I put it like that, not really much of a choice, is there? Those vats of depression are actually pretty boring. So now I just chuckle when I suddenly stumble or when I think the host of American Idol said "stink bombs" when he actually said "stage moms." And, when I get frustrated that I can't do everything I could do PBT (Pre Brain Tumor), I remind myself of all the wonderful people I've met along this journey, about the lasting friendships I've made, and about all the little things in life that have changed in good ways.

And, hell, if all else fails, I can always have a nice glass of something red - and I'm not talking fruit punch!

(B)AHA Moments

2011-03-01T11:33:00.000-05:00

So, not quite a week into the BAHA experience and so far, I'm loving it. Yes, I'm the woman with a finger in one ear, snapping her fingers next to the other ear. It's just SO cool to be able to hear those sounds!

Today, I'll really get to put it to the test. I have to take our conspiracy theorist cat, Rocket, to the vet. Now, just as a bit of background, this is a 12 pound cat who requres two burly technicians to hold him down for a simple exam. And, did I mention the screaming? Him, not me, by the way, although maybe I ought to consider screaming myself. Anyway, I anticipate reaching up and turning the BAHA off at some point during what promises to be a very "lively" experience.

And here are few other pictures, just for fun.

Gotcha Day!

2011-02-25T15:29:00.001-05:00

In the acoustic neuroma, single side deaf community, "Gotcha Day" is code for "I got my BAHA!" So, yes, I now officially look like a Borg.

After last week's snafu with the processor, the people at NYU Med and Cochlear jumped through hoops and got my processor shipped out and squeezed me into the schedule on Wednesday. So, bright and early Weds morning I headed to the train station to make the long trek into NYC and across town

to NYU. The audiologist went through all of the instructions for the baha, including how to get the thing snapped onto my head (easier said than done, my friends!) After arming me with as much knowlege as possible, she sent me on my way with a warning to remove the device if I felt that the sensory input was too much at any point. She reminded me several times that my brain has had 3 years to get used to NOT hearing on that side, so it would need longer than 15 minutes to acclimate to the BAHA.

I am happy to say that I walked across town (about a mile on the noisy streets of NYC) to the train station and took the 2-hour train ride home without incident. Then, I insisted that Willie take me out for dinner just so that I could take the BAHA for a test drive in a restaurant situation.

I must say that this device is exceeding my expectations! It is really amazing how well it works! I find myself plugging my "good" ear at odd times during the day just so that I can hear things through the BAHA. The sound is different, quite tinny. But the kind of amazing thing is that as soon as my good ear kicks in, I don't hear the tinniness of the BAHA anymore. Had lunch with a group of friends yesterday and kept surrepticiously reaching up and blocking my good ear just so that I could revel in the sensation of hearing everyone from my digital ear. Very, very cool!

On the down side, my hair doesn't hide it quite as well as I would have liked, but what the hell. I went around with a half paralyzed face for quite a few months, so walking around with a Borg-like device snapped to the side of my head isn't such a big deal. If anyone has school-aged kids, I am the ULTIMATE Show-and-Tell prop.

So here are some pictures, for those of you who aren't acquainted with the baha... First shows the processor through my hair (I pulled my hair aside for this, usually it wouldn't show), the next gives you and idea as the size, compared to a US quarter, and the last is just another close look at my nifty digital ear...

B DAY

2011-02-16T14:40:00.001-05:00

Well I just got done writing a post about how tomorrow was my long-awaited BAHA day. Unfortunately, the stars are not aligning for me this week. I just got a call from the audiologist's office basically saying, "oops, we screwed up and we don't have your BAHA processor after all.". (Insert long string of curse words here.) And, of course, they don't know how long it will take to arrive, so I have no idea when I will be able to reschedule. So, it looks like it will be awhile longer before I have a shot at stereo hearing.

Stay tuned...

The Tunnel of Terror

2011-02-12T11:50:00.001-05:00

Yes, I know, it's been a month since my last blog (wow, that sounds like the beginning of Confession doesn't it?) Anyway, lots going on here in the hinterlands of northwestern NJ. It is that time of year again for me (MRI) and that always makes me test the upper limits of blood pressure.

I am a claustrophobe. I mean, I have it REALLY bad - even reading about someone being in a small space makes me hyperventilate. Years ago, I had to get an MRI for my back. Not knowing the extent of my own terror, I sashayed into the imaging center and presented myself to the technician. She wheeled me into the machine ... and within 30 seconds, I was unable to breath. Whoosh. Out I came. Turns out that being able to tilt my head back and see out the top of the tunnel didn't actually help. I remember thinking at the time that I couldn't imagine how anyone could survive having their brain scanned in the Tunnel of Terror. I think I even felt some condescending pity.

So, you can imagine my distress 3 years ago when my ENT told me I needed an MRI ... of my head!!! Crap. My head in the Tunnel of Terror ... what could be worse? I demanded a sedative and then spent the next two weeks stressing about getting the MRI. Mind you, I wasn't the least bit worried about what might turn up on the MRI - after all, who the hell gets brain tumors, anyway? Well, you all know how that turned out. I survived the MRI and got "the call" the next day. Yep, brain tumor. Holy crap.

And, by the way, did you know that there is a special category of claustrophia just for MRI machines. Don't believe me? Go ahead and Google "MRI Claustrophia." Hah!

I am now a veteran of the brain MRI (I know, isn't it ironic that someone who is terrified to be enclosed in a small space has to get MRIs every year?) and I am here to tell you that it still scares the crap out of me. Yep, I still need to be sedated, and Willie still sits at the end of the MRI Table of Terror and holds my ankle. This is important because I need to know that I can be snatched from the jaws of certain death if necessary.

A few years ago, some well-intentioned person/s decided that developing an MRI machine that has a wider openeing and a shorter "bore" would be an excellent idea. And, it certainly is...for someone else. For me, there is no "bore" short enough, nor any tunnel wide enough to make me feel any less likely to die on the spot. Nope, I'm not falling for that "wide bore" crap again. That sucker is still terrifying.

So why am I writing about this now? Well, I just had my 3-year brain MRI last Monday (no scary white blobs - yay!!!!) And, now, lucky me, I have to get ANOTHER MRI this upcoming Monday - yes, on Valentine's Day. Happy freaking Valentine's Day to me. So while all of you are enjoying a nice romantic dinner I will be passed out on the sofa, spit dribbling down my chin, sleeping off the after effects of valium. Is it any wonder Willie loves me?

So would you please have a glass of something red for me? I'll be the one passed out in the corner.

Beginnings and Endings

2011-01-03T13:26:00.001-05:00

A new year - time for beginnnings and endings. Unfortunately, yesterday was a very sad day, one of endings. After nearly 13 years, 7 of them spent in our home, our beloved collie, Carrie, left us. In addition to leaving behind a lot of hair (hey, she was a collie, after all,) she has left a hole in our hearts that feels like the size of the Grand Canyon.

Pets bring us complete and unconditional love, along with guaranteed heartbreak (in the words of my grandfather.) Carrie became our dog in 2003, the day after Thanksgiving. Willie had always wanted a collie, and Carrie needed a home after her previous owner passed away. She was born February 24, 1998 with the rather daunting name "Clarion Millcreek Charisma." (Yea, you can kind of see why it got shortened to "Carrie"...) Bred with the intent of being a show dog, she didn't quite make the mark and was relegated to the status of breeder. Sadly, she also failed at that and ultimately became a pet. She had several homes before ours, which may have contributed to her anxieties.

Whatever the case, that day in November she became our very own Carrie - for better or worse, 'til death do us part. We suspect that fate played a hand in bringing this dog to our door at that exact time. She was what some might call a "difficult" dog - her anxieties never left her and frequently manifested in ways that were troublesome, leaving in her wake a host of chewed up cameras, eye glasses, wood paste, chocolate, lemon hummus, and humongous veterinary bills. We suspect that lesser people wouldn't have returned her to the rescue folks. But in spite of her "foibles" (or maybe even becasue of them) she was infinitely lovable and she was ours for "keeps." And, while she loved me, her sun really rose and set with my husband, Willie. Carrie always knew when it was time for him to come home from work and would be there to greet him with crazy barking and a tail that, if it went any faster, would have caused her to become airborn. Those are the memories that I will keep close to my heart.

Carrie has been in failing health for several months and we both knew this day would come, but in spite of what the head knows, the heart is never willing or ready to accept it. At the end, you do what you hope is right by the pet, and you suffer the heartbreak that follows. Her last meal, provided by the vet's assistants, was chocolate and roast beef, two things that were forbidden food, but oh so tasty. On some level I am sure she thought she was getting one over on us, and I suspect she was smiling in the way that only dogs can smile. And, I am also sure that there is lots of chocolate, roast beef, peanut butter and other delectibles in the great beyond ... on the Rainbow Bridge.

Johnny Depp's version of the Irish Blessing seems especially fitting for Carrie...
“May the wind always be on your back and the sun upon your face and may the winds of destiny carry you aloft to dance with the stars.”

And, by the way, Carrie - Phoebe the cat wants to know if you'll save some food for her...

Ciao, 2010

2010-12-31T16:21:00.001-05:00

It's been nice knowin' ya, 2010. But now, it's time to welcome a new kid to town - Year 2011.

Ah, but 2010, you've served us well...

Not one, but TWO trips to Wisconsin to see famed facial therapist, Jackie Diels, who worked miracles with my face.

After years of saying "one of these day" for years we finally made it to Ireland! The sheep and the Guinness didn't disappoint, but the real highlight of the trip was meeting my acoustic neuroma pal, Lorenzo and his wife, Sheila. That was grand!

2010, you also finally convinced me to bite the bullet (or is it the Bolt?) and take step # 1 in getting a BAHA. Yessiree, I have a big ol' titanium bolt in my head, just itching for a processor... (sorry, 2010, but the processor will be 2011's job)

Willie and I celebrated our tenth anniversary - yep, still crazy in love with that guy. The first 10 were so good, that we are planning to hang in for another 10. This time, however, without any brain tumors.

Lots of visits with family, which we plan to continue in 2011, of course.

So, thanks, 2010 - ya done good.

An Acoustic Neuroma Holiday

2010-12-21T11:05:00.000-05:00

Another holiday season is upon us (how the hell did that happen??) and I am taking a little time to reflect on life. I am also reflecting on all my wonderful brain tumor friends and the myriad of funny things we share. Who other than you would understand things like…

Hugging -don’t you just hate it when you lean in for a hug and just keep right on going? Sometimes taking the other person down with you…

Bobbing and Weaving -you are walking along, minding your own business, looking around at all the great sites and suddenly find that you have veered into the road or off the trail. This causes a spurt of adrenalin which causes us to try to quickly course-correct which in turns results in stumbling, bobbing and weaving. All very entertaining for onlookers. Although I have noticed some of the mothers grabbing their kids and moving quickly away…

Drooling and Dribbling – and if your facial nerve is still feeling cranky, how about that drooling thing? Yep, always nice to find out that you have a spaghetti noodle hanging off your lip … and that it has been there for the entire meal because the lip/chin is still pretty numb.

Oil Slick – for those of us who have to keep gel in our eyes 24-7, don’t you just love it when you walk by a mirror and see that you have a massive gel-slick on your face? Honestly, don’t you wonder what people think? We should make up a really inventive story … any ideas?

Whirling Dervish – okay, one of my personal favorites. You are in a store and hear your name being called. You start twirling around trying to locate the source of the sound. Doesn’t work, so the person helpfully calls out “over here.” Great. If I had directionality, do you really think I'd be whirling around like a freaking idiot:

What I Think I Heard – ah, so many funny stories on this one. Ever notice how “chocolate” sounds just like “talk a lot?” or how “caller id” sounds just like “celery…” So, for those of you out there who aren’t single side deaf, if I respond to you in some completely inappropriate manner, just smile and continue.

Winking and Blinking – This is actually a great party trick! When I get tired my acoustic neuroma-side eye either stops blinking entirely, or starts blinking out of sync with the other eye. It’s pretty funny and it totally messes up other people who now don’t know what the hell you’re up to.

Nap Attack – Who among us hasn’t experienced that sudden, not-to-be-denied urge to nap. C’mon, fess up. Some of you have been seen napping at the library, at the coffee shop, on a park bench … really just about anywhere you can plant your butt for a spell.

Abutments – this is a whole new realm for me since I only got my BAHA abutment about a month ago. It sticks out ever so slightly from the side of my head – just enough to catch the edge of that nice knit winter scarf… or the neck of the sweater that I tried to yank over my head in a single smooth move. Hm. Do you think anyone will notice when I have an afghan hanging off the side of my head? Maybe I can color coordinate it to go with the spaghetti on my lip…

Gosh, who knew a brain tumor could be so much fun and so very entertaining??

Merry Christmas!

Under the Category of "I need to get a life..."

2010-12-18T09:34:00.001-05:00

So, it's been a month since I got the little rod in my skull and the little snap-like abutment on my head. I am happy to report that healing is moving along right on track. Kind of wish my head wasn't still numb, but I guess I am used to it at this point.

A couple of my baha friends had told me before I had the surgery that once the sight is somewhat heeled, it is lots of fun to brush one's fingers across the top of the abutment and be able to "hear" it. Yep, all true! Now, when I am bored by whatever is going on in my world, I just put my finger over the abutment and let 'er rip! It is freakishly cool. So if you happen to be sitting around with me and see me smiling for no good reason, just take a look and see if I've got a finger pressed to my head.

I also discovered another new noise sensation -- if I snap on the little white plastic "healing cap" it makes a really cool sound as it snaps on the abutment.

Jeez, I really DO need to get a life, don't I?

The Unveiling

2010-12-03T11:12:00.002-05:00

This week marked two weeks since my baha surgery, and time to get the dressing off and stitches out. Went into NYC on Wednesday and the surgeon undressed and un-stitched everything and then proclaimed her work to be excellent. Not being able to see around the side of my head, I had to wait until I got home to be able to get a good look at things for myself. Eek. Did you know that I have what appears to be rivet on the side of my head???? Frankly, I am not sure whether to be excited or totally creeped out.

Actually, it isn't as bad as I feared. The abutment is small, maybe as big around as a pencil eraser and sits almost flush with my head. That is reassuring as I would sure hate to get it caught on my brush... The incision is also quite small and eventually won't show at all. At the moment, the little bit of my head that was shaved for the surgery is starting to grow new hair and it itches like crazy. These are the things no one tells you about...

I am trying to get an appointment scheduled for mid-February to see the audiologist who will install the processor and show me how to use it. Seems like a long ways away, but I am sure it will be here in the blink of an eye.

One more step in the acoustic neuroma journey...

Thanks ...

2010-11-25T09:05:00.005-05:00

First of all, can I just say how surprised I am to be staring the 2010 holiday season square in the face? Didn't I just put away the Santas and the Christmas decorations? And, wasn't it just a few days ago that I stashed my Reindeer socks for another year? As they say in the comics ... Holy Crap, Batman!

Like most of my fellow Americans, I like to take a little time on Thanksgiving to really reflect on the many things for which I am thankful. Topping the list is that I am married to possibly the best guy in the world (yep, that's you, honey!) And, along with that, I am grateful that all of our parents are in good health. I'm grateful for my wonderful friends who've been there no matter what. And, I am grateful that God invented turkeys and chocolate (no, not in the same bite, but close...)

And, strangely, I am even grateful that a brain tumor arrived in my life a few years ago. Yes, you read that right. And, no, I haven't lost my mind. Of course, I am not particularly happy that I grew a "blob" in my head, but on the other hand, look at the amazing people I've met as a result of this! Would I have ever met Lorenzo in Ireland? Or Hrissy in Bulgaria? Or David in LA? Or Kay in Texas? Or Jan in Chicago? Or Lori in Virginia? Or Wendy on Staten Island? And, the list goes on and on. These are people I met when I was learning about acoustic neuromas ... they are the ones who said "I understand" and really meant it! They celebrated the victories and commiserated on the bad days. And, they still do.

So, yes, I have a great deal to be thankful about. I shall raise a glass of Willamette Valley Pinot Noir later and say ... Her's to YOU!

Oh, and I just came up with one more thing to be grateful for ... thanks to Wendy for telling me the the baha "healing cap" could come off accidentally and if it did, one could simple snap it back on the abutment. Thanks, Wendy - you just saved the surgeon getting an emergency page on Thanksgiving from an hysterical patient...

Step One of BAHA

2010-11-21T09:53:00.002-05:00

It is official - I now have another piece of titanium in my head! Willie and I headed into NYC bright and early Thursday morning - check in time at the hospital was 10:30 so we figured we would leave at 8 AM just to give ourselves plenty of time. As it turned out, we hit every conceivable delay on our way in and arrived right at 10:30, after a 2 and 1/2 hour commute. Needless to say, my stress level (and blood pressure) were peaked out by that point. However, we made our way to Day Surgery and got registered, then off to our little room. Got changed into the ubiquitous hospital gown and grippy socks (yes, a complete fashion statement) only to learn that the surgeon was running late.

The nurse came in at 12:30 to escort me to the OR - yes, patients walk into the surgical suite rather than getting rolled in on a gurney. When I arrived, there were about 7 gowned and masked people there - the nurse introduced me (while I stood there in my gown and socks feeling like a bit of an idiot) and then I hopped up on the table where the residents began hooking me up to things. As is usual, one minute I was awake and the next minute I woke up in recovery.

Turned out that the surgery ran about twice as long as expected (not sure why, but I will find out when I see the surgeon on the 1st). Poor Willie was frantic with worry by the time the surgeon finally came out. As for me, I couldn't see anything when I woke up - turns out that they had put gel in BOTH eyes so all I could see was blurry shapes. Once I realized that I wasn't blind, I felt quite a bit better.

Seems that my heart rate and blood pressure were both pretty elevated, so they ended up keeping me in the Recovery Room until a little after 7. Mostly, it was boring. I gummed around a piece of graham cracker and drank several cups of apple juice. I hadn't thought about the fact that one side of my mouth doesn't really produce any saliva, so when I tried to eat the cracker it just turned into a hard, dry ball in my mouth. It got stuck to the roof of my mouth and then I couldn't swallow the damned thing. Well, at least it kept me focused on something other than my head.

I had a hell of a headache when I woke up - my skull was just throbbing. Fortunately, the nurse was quick to shoot me up with something. Gotta love those drugs.

Had a couple of quiet days - basically no bending, sneezing, cleaning, cooking, etc. Today, however, I am planning to get out for awhile. I need to walk a bit to get my equilibrium back. For whatever reason, my balance took several giant steps backwards after the surgery. I am guessing the anesthesia probably affected my brain's ability to keep me upright. Anyway,I am sure a little walk will help.

I was brave enough to look at the "wound" yesterday. Basically, I can't see a thing because it is all covered with a breathable, waterproof dressing. Somewhere under that is the rod and abutment. I guess I will see them when the dressing comes off on the first. The bald patch is pretty big - guess they had to shave quite a bit of hair to get a clean site. But, most of it will grow back - other than the small patch where they remove the hair follicles. And of course, there are a bunch of numb spots on my head again. Sigh. I was just getting some feeling back and now it seems that I am back where I started. Oh well.

So, I am now done with what I sincerely hope will be the last operation I ever need on my head! Let the countdown for the processor begin ...

Date With the Drill

2010-11-15T09:40:00.003-05:00

Monday morning in NJ. Waiting for my tech guy to show up to fix one of the computers - it is being extremely uncooperative and making horrid noises. I am sure it is in a death spiral, just waiting for confirmation...

Other than that, I am doing the final countdown to my Date With The Drill. Yes, all hurdles have been overcome and I am scheduled to have the titanium rod implanted in my skull on Thursday. Gee, when I put it that way ... yuck. Actually, the approval process went surprisingly smoothly and the insurance company gave the go-ahead very quickly. So, I am "lock-n-go" for this Thursday. Should hear from NYU tomorrow with a definite time. I expect things to go smoothly, and will be back to give you the post-implant report later this week.

Cheerio!

Titanium Girl

2010-11-05T09:42:00.002-04:00

Yes, I am on my way to having yet another piece of titanium in my head - this one in the form of a rod. It will go nicely with the plates and screws that are there already - kind of rounds out the hardware situation in my skull, don't you think?

So, yes, I am on my way to a BAHA. I tried every trick in my limited book to get Aetna to approve Dr. Roland to do the surgery, but they denied it. He is not "in network" so they wouldn't budge. It was a setback, but after a day of pouting, I went on to Plan B.

I should mention here that I am quite friendly with everyone on Dr. Roland's staff by now, including Irene, who does all of his surgical scheduling. She also handles the other neurotologists in his practice, including a freshly minted young neurotologist who does bahas!! So when we got the word from Aetna about not covering Dr. Roland, Irene suggested Dr Cosetti, who IS an in-network provider. Had my initial consultation with her on Wednesday of this week, and got the call yesterday with my tentative date for surgery! Mark your calendars - Nov. 18, time to be determined. And, by the way, Dr. C did her Fellowship in Otolaryngolgy with Dr. Roland.

Woot Woot! Those of you who are SSD will understand why I am thrilled about getting a hole drilled in my skull - those who aren't may think that I am totally creepy and weird. Think what you like. In two weeks, if all goes according to plan, I will be sporting a titanium rod and a little "abutment" on the right side of my mastoid bone. I am going to be the ultimate "show-and-tell" item.

Technical details - the surgery takes about 1 hour and involves removing a bit of hair (permanently) on a dime-sized patch of my head, pulling back a flap of skin, drilling a hole, screwing in the rod, stitching the skin back, putting on some sort of festive dressing, and sending me home. Simple. I will have to wait about 90 days to get the processor, which is what will allow me to "hear" via bone conduction. It will also provide yet another show-and-tell opportunity since I will then have a small box affixed to my head. Wow. I am a fashionista in the making.

So, that is the baha news of the week. Send out a few good thoughts that Aetna approves the procedure quickly and without incident!

A Moment on SSD

2010-10-05T18:09:00.002-04:00

I was hanging out on the Cochlear site, specifically on the BAHA section this evening and came across something that really resonated with me. Hopefully Cochlear won't be irritated at me for copying this verbatim...

For people who suffer from SSD, the limitations presented when this loss occurs are life changing. The reality is that many with SSD have to make very significant life changes. Simple everyday activities, such as those listed below, can become stressful and challenging:

* Crossing the street
* Attending professional meetings
* Going to restaurants
* Interacting with friends and family at social gatherings
* Bicycling
* Jogging
* Driving a car

In group situations loud sounds can be overwhelming and the simplest things in life can become major obstacles. In many cases this leads to the individual with SSD isolating him- or herself - both socially and professionally.

This is probably the best and most succinct piece I have ever seen about being Single Side Deaf. In fact, there is nothing I would add to this. Everyone who lives with, or knows someone who is SSD should take a look at this - it will help you to understand what life is like for us. Not looking for pity here, by the way.

I am in the beginning stage of getting a BAHA. If it can mitigate or eliminate any of these issues, I will consider it completely worth it to have a bolt in my head. And, as Willie pointed out, if I decide I don't like it, I'll still have something to hang my dirty clothes on...

Progress Report

2010-09-30T10:09:00.007-04:00

I just got back from my 2-day follow up with Jackie Diels in Madison, WI. If you don't remember, I went to see Jackie for 3 days this past February to start the rather arduous process of neuromuscular facial retraining. Which is doc-speak for facial physical therapy. I have spent many, many hours doing very specific exercises and stretches to help manage the synkinesis that resulted from damage to my facial nerve. Synkinesis, if you don't know, is when the nerves heal wrong and send the wrong message to muscles in the affected area. For example, when I smile, my right eye tries to close and my right lip pulls up. Weird stuff like that.

Rather than try to write about the improvements, I am just going to post a couple of pictures that will illustrate the progress more than any 1,000 words. So, take a look...

First picture was taken in February, when I first went to see Jackie. This is my face at rest with eyes closed. The second picture was taken this week after working with Jackie for 2 days. Notice how my lip pulls up in the first picture, and then look at how symetrical it looks in the second picture. It is a little hard to see, but also notice that my right eye does not fully close in the first picture.

Okay, so here is another before/after with me compressing my lips. In the first picture, you can see that my right eye is half closed and the chin is all dimpled (also synkinesis) whereas in the second picture my eyes are symmetrical and there is minimal chin movement.

I am sure that the photos do not do this process complete justice since part of the improvement has to do with sensation and lack of pain which, of course, you can't see. However, I think these pictures do give a good depiction of the visible changes that have occurred. Stay tuned...

Viva Ireland!

2010-09-17T14:46:00.005-04:00

Okay, I know I've been off the grid for awhile (hey, like that? I learned it from watching way too much "24"). Willie and I had a fantastic 11 days in Ireland. A highlight of the trip was meeting Lorenzo and his wife - finally! Lorenzo and I have shared stories, recipes and laughs for the last few years over the internet, but this was our first face-to-face meeting. And what fun!! We had more laughs, ate lots of great food and shared some funny brain tumor war stories. And Lorenzo and Sheila pointed us to some great spots as we continued our travels around the southwest coast of Ireland.

So, what are the other highlights? Well, driving on the "wrong" side of the road is a thrill. And when you add twisty one lane roads that are meant for 2 lanes of traffic - well, can you say "WHEEEE?" Willie said that he spent the entire time in a state of terror (which is par for the course for all of our vacations.) As for me, I was screaming that he was too close to the left side of the road.

Okay, but seriously ... the coastlines and countryside are breathtaking. You can easily understand why people call it the "Emerald Isle." The coastline is a stunning combination of immense sandy beaches and rugged rocky cliffs. Really, it is just amazing. And, did I mention the sheep? OMG, sheep everywhere, including right in the middle of the road. I was ordering Willie to stop the car every two minutes so I could get out and look at the sheep. Yeah, I know - that was a little something that he didn't know when he married me 10 years ago. I am fascinated by livestock. Really.

We will definitely return to Ireland. There are more sheep to see, more food to be eaten, and more breathtaking sights to discover.

Ba-Ha-Ha-Ha

2010-08-15T09:15:00.003-04:00

That is the sound I like to make just before I head out for vacation! But, today, it has another meaning...

You might recall that I am deaf on one side thanks to the Big Brain Tumor Adventure of 2008. I must say that the first year after surgery I was dealing with so many other things (like a paralyzed face) that I didn't really realize how frustrating it was going to be to have impaired hearing.

Most people equate this to a hearing loss, as in diminished hearing. It's actually quite different. My hearing on the Left side is excellent - really, I can hear a mouse fart in the woods. Unless there is any sort of background noise ... lawnmowers, air conditioners, people talking, music, wind in the trees, etc. And you'd be amazed at how much background noise exists in our normal, day to day lives! The more sources of noise there are, the more strain it puts on my "good" ear and my brain. You see, when you have a total hearing loss on one side, you lose the ability to be able to filter noise effectively. All the noises arrive at the good ear at the same time, which makes it quite difficult for your brain to process each noise individually. What frequently happens is that all you really hear is a blast of noise - voices tend to run together, background noise overrides other noises that you would normally be able to isolate. All in all, it is frustrating and it is also very tiring. So, why am I talking about this? (And, no, I'm not whining...)

Well, several weeks ago I went to get my hearing checked in my good ear (a yearly occurrence now since it is the only ear I have left). While I was there, I had them evaluate me for a Bone Anchored Hearing Device (Baha, by Cochlear). This is a pretty cool thing that allows your skull to conduct sound waves to your "good" ear. It is also a pretty major commitment. It involves having a titanium "abutment" (think screw) embedded in your skull above the deaf ear. Once the screw has been occified into the mastoid bone of your skull (which takes about 3 months), you can then snap a small sound processor onto the abutment and ... voila, you have some degree of bilateral hearing! Of course, once the screw is in there, it is there for life, so you kind of need to be sure you are okay with that. If you can embrace your inner Frankenstein, though, it seems like a good way to simulate some sort of normal hearing.

Like all things, it has some limitations. Friends who have a Baha tell me that it doesn't "sound" like regular hearing, it has a bit of a tinny sound to it. And, most people still can't tell where sound is coming from (directionality, or localization.) But, it does allow you to know when someone on your deaf side is talking. And, it does allow you to filter some of the background noise which makes it easier to comprehend words. It even has a little adapter so that you can plug in a device like an iPod.

So, over the next few weeks, I will be making a decision to whether I want to become a "bolt head." And, if the decision is yes, then I will start what will surely be a battle royal with the insurance company to cover the operation and device.

If you'd like to know more about the Baha, you can check out their website at
http://products.cochlearamericas.com/baha/introduction-to-baha

LaZ Boy

2010-08-10T16:16:00.003-04:00

Okay, first let me fall on my own sword. I can't believe it has been nearly a month since I blogged. Mea culpa. I will use the excuse that I've been busy, but that's pretty weak.

So, what inspired me today? Well, actually it is something that I've been driving past for the last year. And, every time I see it, it bothers me. What am I talking about? The LaZ Boy.

There are a couple of things here that are concerning me. First, and perhaps most obvious, is the fact that this cloth recliner (LaZ Boy, if you will) sits out front of this store on NJ State Route 206 day after day, rain or shine. Think about it. Can you even imagine how nasty it must smell? Euw. And how many mice call it home? It boggles the mind. Frankly, the reason this picture isn't great is because I was afraid to get out of my car and approach the damned thing. There is nothing that would induce me to buy a recliner from this place. NOTHING.

But here is the thing that really concerns me, and something I think you men should rise up and fight about. LaZ Boy. Why not LaZ Girl? Or, even better, how about a gender-neutral LaZ Person? Men, if I were you, I'd be plenty pissed about this! And, I wouldn't stand for it!! Rise up and revolt! Don't let the recliner people imply that you are lazy, or that you are boys. Enough, I say!

Scarred For Life

2010-07-13T18:07:00.000-04:00

No, I’m not referring to the scar on the side of my skull, although to tell the truth, it's pretty impressive. I’m talking about some of the things I am forced to look at as I go about my day. Take, for example, the guy I saw strutting down the side of a busy country highway – no shirt, big furry belly. Euw. Will I ever be able to get that image out of my head??

And, that got me to thinking about some of the other things that no human being should ever have to see. Let’s start with big girls in skinny jeans and tube tops. Whoa. That paints a picture, doesn’t it? I take small comfort in knowing that these girls are paying attention to the “tanning is bad for you” message, which I know to be true by seeing the expanse of lily white flesh flowing over the top of said skinny jeans. I ask you – how is it possible that anyone actually think that this is attractive???

And, while I am at it, let’s talk about Spandex. I was going to suggest that no woman (or man) over the age of 16 should be allowed to own spandex, but maybe I am being too generous. I say we outlaw it all together. I can’t think of a single person whose looks improve with spandex. Can you?

Finally, what about butt cleavage??? You know what I’m talking about – don’t pretend like you’ve never seen this. Because I know that once you’ve seen butt cleavage, the image is burned into your retinas for life. And, ladies, I’m not just talking about the guys here! Butt cleavage on ladies isn’t very attractive either. Seriously, get a belt or suspenders, or pants that fit. We don’t want to see your but – period!

I am sure some of you will have more suggestions to beautify our world, protect our eyes, and prevent us from undue trauma. Right?

WHAT???

2010-06-22T13:35:00.004-04:00

Usually when I utter the word "What" it means that I didn't hear something (that whole single side deaf thing.) However, today's "What" is about something entirely different, something I've been having an internal rant about for some time now. The "What" I refer to is the absolutely ridiculous signs that I see being proudly displayed as if the owner didn't have a single working brain cell. Yep, I'm getting wound up! Get ready!

The latest "What" sign is this one. Take a good look at it. Consider it. Ask yourself these questions:

1) Who is "We"
2) What is "We" renting?
3) Assuming that I actually wanted to rent whatever it is that "We" is offering, how in Hell would I contact them?

Seriously. This sign (We Rent) is sitting on a vacant lot with only dirt and boulders - nothing else. It's killing me. I want so much to meet whatever Einstein put this up and ask them the compelling question - What were you thinking???

Frankly, this sign is even more confounding than the one at the local convenience store that says "Free Coffee with Bait." Huh? Does that mean that the coffee has small fish in it? What if I don't want bait with my coffee? Can I get coffee sans bait?

Seriously...

2010-06-15T09:46:00.002-04:00

Okay, so some of you are staring at this rather scruffy looking thing and wondering - what the hell IS that thing?? That, my friends, is a rather large possum. Willie noticed it lumbering across our back yard this morning, so I raced outside with my camera to get a shot. It's pretty unusual to see these guys out during the day as they prefer the dark of night for their adventures. He was not at all impressed with me or my camera and continued to amble off into the woods as if he didn't have a care in the world. Nature - you gotta love it!

Willie may have a slightly different slant on the whole nature thing since he came face-to-face with a black bear over the weekend. He was doing his biathlon (run/bike/run/collapse) and was on the bike when a medium sized bear ran out of the woods about 50 feet in front of him. Willie said that both he and the bruin skidded to a halt and gave each other the eye. Fortunately, the bear conceded and ran off into the woods. Willie got that part of the biathlon done in record time.

I'll have to see what else turns up. Stay tuned...

Glad Press & Seal Plastic Wrap

2010-06-03T10:00:00.003-04:00

Okay, first of all, let me start by saying that I am not, nor have I ever been, an employee or spokesperson for Glad. That said, I would like to take a minute to extol the virtues of this modern day miracle product!

To back up just a bit, let me tell you about the glorious day when I first discovered Glad P 'n' S. You may recall that I ended up with a post surgical infection after my brain surgery several years ago which necessitated me having a peripheral internal cardiac catheter (PICC) line "installed" so that I could infuse myself twice daily with an elixir of antibiotics. Stay with me here, I'm getting to the good part.

Because the PICC stays in your body for about 6 weeks, and because it ends up very close to your heart (hence the "cardiac catheter" part of the name,) it is imperative that the external part of the line (the part than hangs out of your arm) is kept very clean. It must also be kept very dry. Which is where the Glad P 'n' S comes into play.

For the first few days I tried encasing my arm in a plastic trash back, taped to my arm pit and shoulder with duct tape. Yeah, well, I am sure you can see the problems with this. Duct tape is waterproof, which is the good news - it also tries to become permanently adhered to your most tender body parts, which is the not-so-good part. After several days of this, I was becoming desperate. Not only did my arm have bits of duct tape stuck to it, but I was quickly going through our entire supply of plastic garbage bags. Never mind that I couldn't hold the bar of soap in my right hand because said hand was encased in a plastic garbage bag. And forget about maintaining any level of attractiveness for my poor husband!

So, somewhere I had read about people using plastic wrap to cover wounds and other things that need to stay dry. Really? Sounds great! So off to the store I went to search the plastic wrap aisle. And, as I was inspecting the goods, my eyes landed on ... Glad Press 'n' Seal! That looked like it just might work - and if not, I could always use it to wrap food!

Okay, I'll confess right now - Glad Press 'n' Seal changed my life!! I was able to wrap a big hunk of it around my arm where it stayed tightly sealed and water tight, allowing me to shower in comfort. And, best of all, it came off easily and didn't cause any sort of adhesive rash. Bonanza! Since then, I panic if I see the supply running low.

So, why bring this up now, two years later? Last week I came down with some sort of icky wrashy thing on my arms. The doctor proclaimed it to be "contact dermatitis" which is doc-speak for "yep, you've got something and we don't have a clue what it is." So, in addition to several prescriptions, the doctor instructed me to put Domeboro Astringent compresses on it several times a day. Since the affected areas were on my inner forearms, it was pretty awkward to sit there with wet, drippy compresses - every time I so much as twitched, they'd slide off and I would have to start all over again. And, then I though "Hey, wait a minute! You've got Glad Press 'n' Seal!" So now I sit here typing this with both arms wrapped snuggly in Glad, compresses in place, happy as a clam. (And, what does that mean - are clams really that happy?)

To the people at Glad - if you've got your Google alerts set to pick up online mentions of your products, I just want to say that you are missing a marketing opportunity here. There is money to be made in the post surgical, wrash, PICC line community. Personally, I think you're sitting on a gold mine. But that's just me...

Have a great day! (And, to the people at Glad, if you want to send me a check, feel free...)

That Sucks

2010-05-27T19:06:00.003-04:00

When I first learned, in March of 2008, that I had this thing in my head called an Acoustic Neuroma, I was completely lost. I felt fortunate in the respect that I had good medical insurance, but that wasn't much help in terms of finding surgeons who actually knew what to do with an acoustic neuroma - what I didn't want was some lay-neurosurgeon who viewed AN surgery as some big adventure. I remember going to my insurance company's website and doing a search for "neurosugeon". Well, that was horrendous - it produced hundreds of results (I live in the greater NYC metropolitan area) with absolutely no way of ascertaining what type of neurosurgery any of them did.

I remember being paralyzed for the first few days. I'd sit at my computer and do endless searches on my insurance company's website, trying to find out what kind of surgeon I needed. Willie put out a query on the ANAUSA website and we got a couple of names - I ran them through the website and NONE of them was a participant in my plan. I really spiraled into despair at that point. In fact, I would say that was the most stressful part of this entire journey. I called a friend in NYC who called her ENT and was given 4 names - NONE in my insurance.

At the time, I didn't know that there are actually 2 surgeons involved in the surgery. Why is that significant? Because if either one of them was in my plan, there would be a way to get the procedure covered. I went through several days of what I recall as sheer hell until I found the name Golfinos in my insurance plan. Bingo!! He worked with another surgeon named Roland who had been highly recommended through several sources. It all worked out. Golfinos admitted me and submitted all of the insurance paperwork, including approval for the insurance plan to cover the cost of Roland. I was extremely fortunate that I was able to get two such remarkably skilled and experienced surgeons. And, I was able to have surgery at one of the leading medical school hospitals in the country.

We ran up against some post surgical challenges since my recovery was not a smooth one in many respects, and I ended up needing to be under the care of Dr Roland for a long time (still am, in fact.) We were able to negotiate a rate with him for my ofice visits and we pay cash for all of them. Our insurance company does not pay one red penny, but it is worth it to me to continue under his care since I have had so many challenges with facial nerve recovery. And, I really, really like him!

I have gotten my follow up MRI's with Dr Golfinos and that's gone along just fine since he's covered by the insurance.

And then, today, I get a letter in the mail from Dr. Golfinos' office saying that as of June 23, he will no longer accept my insurance. What???? Shit. I must say that it has left me feeling ... a bit scared. What if the damned thing grows back? I would have to seek out other surgeons since paying out of pocket for brain surgery isn't really an option. Yes, I know that I am looking at the dark side. I'm entitled to feel upset for a day. And, then, I'll figure out what to do. Best case scenario, I will continue with my aftercare with Dr Roland and have him read my annual MRI. Worst case, I will have to look for new doctors. But that would suck. Really suck. I'm hoping for Plan A...

2010-05-17T12:44:00.005-04:00

On March 19, my beautiful friend Lynn Marie Delaney passed away after a long and hard-fought battle with cancer. Lynn was a stage actress and singer and she had a soft spot a mile deep for animals. And, she collected art glass because it appealed to her sense of beauty. So isn't it fitting that, before she passed, she arranged for her family and a couple of her closest friends to receive a beautiful "Spirit Weight". And, that each weight contains a small amount of Lynn's ashes. The man who creates these beautiful works of art created the very first one to commemorate the passing of his beloved dog, who had cancer.

Well, my own Spirit Weight arrived this weekend and, as you can hopefully see from the picture, it is just beautiful. It has a place of honor on our fireplace mantle, in the living room where "the girls" spent so many great weekends together both before and during Lynn's illness. I like to think that she's hanging out with us and smiling.

And, if you want more information, visit the artists website at http://www.marcboutteglass.com

Hyperacusis

2010-05-13T09:08:00.002-04:00

For the last two years, I've had an uncomfortable sensitivity to noise. And, frankly, I haven't given it much thought - I just make sure to have an ear plug or to have my finger at the ready (to jam into the ear, of course!) Then, today, I was browsing the Acoustic Neuroma Assn forum and saw a topic on hearing sensitivity and - lo and behold - there is an actual name for it. Hyperacusis. Huh.

I did some reading up on it (thank you Google) and found myself nodding my head and mumbling to myself - "yep, that's exactly what happens." And, then I vaguely remembered Dr. Roland mentioning this as a possibility to me early on when I complained of noise discomfort. I was in the throws of dealing with post surgical infection and facial paralysis at the time, so it must have gone in one ear ... and right back out the same ear. (HaHa - Get it?)

In any event, it is something of a relief that I'm not just being a wimp. Turns out that there are quite a few people out there who have varying degrees of hyperacusis. And many accompanied by tinnitis which I thankfully don't have. So the good news is that I have company and I am not losing my mind; the bad news is that there really isn't a cure for it. So, have ear plug at the ready and avoid certain noises (kids screaming, small dogs barking, sirens, loud music, etc). Not so bad.

"The Book"

2010-05-11T11:10:00.003-04:00

I think I've referenced this in passing a few times .. I decided late last year to write a book. This whole acoustic neuroma experience has changed my life in ways I never could have anticipated - some good, some not quite so good, but all valid. My own experiences got me to thinking about all of the people I know who've faced down their own life-changing medical "events." Which raises the question - how do we all get through it and adjust to the "new" us? I am not sure I have the full answer yet to that question, but writing helps me to work through it.

Okay, now I'll get to the point ... A major focus on the book is how people cope with and process both the initial diagnosis and the aftermath, whether it be acoustic neuroma, diabetes, fibromyalgia, celiac, cancer or a host of other conditions. What happens in your mind when the doctor says "you've got (fill in the blank)?" And what happens later when you have to realize that some things in your life will not be the same as they were "before..."? So, I'm looking for stories. I won't use real names in the book, but I would really like to include some quotes and stories from real people. Anyone up for this? If so, just send me a message and we can work out the details.

Thanks, in advance!

Happy Mother's Day

2010-05-09T13:04:00.003-04:00

This one goes out to my mom, who has been a friend as well as my mom for these last 54 years. My mom faced the death of a sister who was way to young to die, then the death of both parents. But she's a brave, strong woman. And I guess God knows that because 12 years ago, he gave her lung cancer. Now, that is a test. My mom's life changed forever then - she now has only part of one lung, but she has an indomitable spirit. And, if you met her, you would never know that she doesn't have quite as many essential body parts as the rest of us. She's my hero.

Love you, mom.

Two Years Ago...

2010-05-01T12:08:00.002-04:00

Well, hard to believe that it was two years ago yesterday that I checked into NYU to have brain surgery. And, at about this time 2 years ago, I was finally getting ready to be transported from the Recovery Room to what is called a Step-down ICU room. As near as I can tell, the step-down room is pretty much like any other room only with more roommates and a lot more tubes, wires, beeps and buzzers.

I spent the first night after surgery in the Recovery Room instead of Neuro ICU simply because NICU was full up. So, the other Acoustic Neuroma patient and I were tucked into a corner of the Recovery room with our own Neuro nurse. It wasn't the most pleasant of nights, but that probably was as much to do with waking up with a big incision in my head than with the accommodations.

I would be hard pressed to describe what that first 24 hours felt like - other than to say that it was unpleasant to the extreme! Funny thing is that the thing that bothered me the most was the pressure dressing on my head - that friggin' thing was wrapped completely around my skull so tight that my ears were smashed against my head. I remember my damned ears hurting more than anything else - which is actually funny when you realize that I had a 6 inch incision in my head and a 2-inch incision in my belly. In fact, I remember trying to slip a finger between the pressure "turban" and my head to allow my poor ears to get some room - naturally, I did this when no one was looking. I am pretty sure that this was not on the list of recommended activities.

When I was being transported from RR to the step-down "suite", one of the orderlies who was wheeling me suddenly stopped, got a horrified look on her face, yelled something at her partner about the "patient coming unhooked" and bolted back to the RR. Now, as I am laying on my little gurney in the hallway, I started to get just a little concerned. Even in my morhpine-induced haze, I intuited that something was amiss. And, when I was able to rotate my head just a few degrees to the right, where the other orderly was fumbling around, I noticed one of the tubes that was attached to me dangling, dripping blood on the floor. Yikes. That can't be good. Well, soon enough a gaggle of nurses and doctorly-looking people scurried up, conferred, and quickly got the runaway tube back where it was supposed to be. Gee, they will do anything to make sure the patient is entertained, won't they? I am happy to say that the rest of the day was uneventful.

Ah, what a difference two years makes...

Good News!

2010-04-27T16:52:00.002-04:00

This will be a very short post, but I am bursting with good news that I wanted to share. I just returned from NYU where I got my 2-year MRI followed by visit with Dr Golfinos (neurosurgeon). Dr G was able to pull up the film immediately and pronounced my head tumor free!! Since I was feeling more anxious than usual about this MRI, I am elated and relieved. Yay!!!

Speaking About Acoustic Neuromas

2010-04-17T11:13:00.002-04:00

Tomorrow I am off to Summit, NJ to attend the Acoustic Neuroma Assn of New Jersey's meeting. I am have also been asked to be on their patient panel to speak about facial and eye issues. So, today, I'm doing a little prep work and gathing together some props.

Props, you say? Yep, props. Since dry eye is such a problem for so many post treatment patients, I thought I'd bring along some samples of various things I've used: eye gel drops and ointment, eye cleanser, sleep mask lined with Glad Press 'n' Seal, onion goggles (pink), and Fit-over sunglasses. I plan to pop the pink onion goggles on at some point during the talk, just to get a laugh. Personally, I think the goggles are hilarious and I still giggle when I put them on. Should be fun, and hopefully people will find it useful.

Following the general meeting, I am also also attending my first board meeting as the newest member of the Board of Directors! Really looking forward to it.

Have had a fun week with my parents, who rolled into town on Monday in their motorhome. They're parked on our driveway extension and have been busy improving our property. So far, they've stained our deck (which REALLY needed it!), pruned a bunch of bushes, taken down the deer fencing, de-spidered the garage doors, and a host of other things that we never seem to get time to do. In return, I've been baking them bread and providing hot meals! Really fun having them here, and hope they hang around for awhile.

Good times...

Ode To A Nap

2010-04-10T11:29:00.001-04:00

Napping you ask? A blog about napping? Seriously? Okay well I have not taken leave of my senses and I really do have a couple of things to say about napping.

First, let me tell you that I am married to a man who has deep appreciation for the art form of napping. In fact, when we first started dating I used to be somewhat alarmed by Willie's ability to nap almost anywhere anytime. Most shocking of all, was when Willey wanted to nap when we were on vacation! As someone who is chronically in motion, I could not understand Willie's desire to nap. After all there are of things to do and places to see -- no time for napping.

Well, my whole perspective on napping changed just about two years ago. Turns out that one of the byproducts of brain surgery is fatigue -- numbing, impossible to ignore, not-to-be-denied fatigue! For the first couple of months following surgery I found myself napping at least once, sometimes twice a day. And these weren’t just quick little 20 minute naps either -- these were masterpiece naps that could easily consume several hours.

While I no longer have the need to nap multiple times a day, or for hours at a time, I do still find that I am occasionally overcome by fatigue and when that happens, the only solution is a nap! And I've learned to embrace my need to nap. Yes, I have become a lover of the nap. In fact, as I plan our upcoming trip to Ireland, I find myself trying to figure out when we will fit in our naps!

Yep, I’ve gone over to the dark side – I am officially and forever … a Napper!

Lynn's Coming Home!!

2010-04-08T13:18:00.001-04:00

Heard from Karen last night that all hurdles have been cleared and she will be bringing Lynn's ashes out here in a couple of weeks. The "party" is being planned for the afternoon of Friday, April 23. Lots of pictures, lots of chocolate and lemon goodies, maybe some Prosecco. And, lots of friends.

Progress!

2010-04-06T08:36:00.003-04:00

Spring has sprung here in NJ and the weather has been nearly perfect for the last week. Two years ago, I was in the final countdown to brain surgery. I wonder if I will ever view spring in quite the same way as I did BBT (Before Brain Tumor). I was laser focused on the surgery and had a detailed plan for every minute before and after surgery. I thought I had planned for every possible contingency. Based on all the orders I was barking out to everyone within range, I seemed to be in total command of the situation!

As usual, life has other plans for us. The only thing I really didn't plan for was facial complications. Not that I didn't know that facial involvement wasn't a possibility - more that I just didn't want to think about it. Which isn't really like me. Well, anyway, life tossed me a lemon in the form of facial paralyis and all of its ensueing challenges.

Happily, I have regained most (probably 75% give or take) movement back and I look pretty much like anyone else unless you know what you are looking for. Several months ago a blogged about my visit to Jackie Diels, neuromuscular facial therapist, extraordinairre. I posted some pictures which probably tell the story better than words. I am getting ready to post some more pictures, although I think right now the progress is more internal than perhaps external. The most profound change recently is that I am no longer slurring or lisping! Which means that I am improving control of my lips. wahoo! Also, and this is huge, the horrid tightness in my right cheek is almost gone!!! I do notice that it tightens up if I am tired, or towards the end of the day and I am still using moist heat on my face in the evening, but it is just so much better. It feels amazing not to have my face feel like it is clampled in a giant vise. Yay!! Now, if I could just make the freakin' chin dimple go away (yea, yea, I know - patience, Debbi.)

Everyone has gone to great lengths to tell me that my face will never be quite the same as it was BBT, but I am okay with that. Hell, I am a 54 year old woman - nothing looks quite the same as it used to!

Switching gears for a moment. Lynn's memorial "party" in Seattle was held on the 27th of March. There were about 50 people there to celebrate Lynn's life - lots of food (all the stuff she loved) and lots of singing (many of her old theatre chums were there, so lots of show tunes.) It sounds to me like it was just what Lynn would have wanted. As soon as all of the legal hurdles are cleared, her sister Karen will bring her ashes to NYC where there will be another celebration with all of her East Coast friends. It was her wish that there not be formal services, but instead "parties" to celebrate the good times. It's fitting.

Memories

2010-03-26T12:12:00.003-04:00

It's been a week since Lynn passed away, and she has seldom been far from my thoughts. I've taken time just to reflect back on all the happy memories - isn't that the best possible way to pay tribute to someone you love?

The core of our little group (the posse) consisted of Peg, Lynn, Kura and I. We all lived in Manhattan so spur-of-the-moment dinners were a weekly occurrence. Of course, these dinners were usually preceded by "smart cocktails." We were, after all, single women living in the greatest city in the world - is there a better reason to have smart cocktails?

Every birthday was cause for celebration, and we marked each birthday with much fanfare. Breakups, auditions, new jobs, and Fridays were all good reasons to gather. Actually, we really didn't need any reasons, come to think of it!

Lynn had a beautiful singing voice and had made her living in her early days in New York singing, dancing and acting. One of my fondest memories is of her singing "Santa Baby" every holiday season - she would always manage to inject just the right amount of naughtiness into the lyrics, and always with a twinkle in her eye. She also sang at our wedding - actually, all of the NY posse sang. Turns out that I am the only want who just totally sucks at singing. However, I'm a very appreciative listener!

After Willie and I got married and moved to "the country", we created new events and reasons to get together. One of the favorite events was our annual "apple pickin' weekend" which usually coincided with Lynn's birthday. Lynn never cooked much during the time I knew her, with the exception of a splendid apple crisp made with freshly picked apples. I'll never eat apple crisp without thinking of her and smiling.

Ah, yes, so many wonderful memories. Here's to you, Lynn.

Rest in Peace, My Friend

2010-03-19T13:01:00.003-04:00

Last night, a little after midnight on the west coast, my friend Lynn passed away. She fought a long and valiant battle with cancer and outlived every prediction her doctors made. In the end, though it was a fight she couldn’t win. Her sister, Karen, was with her when she died, as she has been with her every step along this journey. Lynn has been surrounded by family and friends in these recent difficult weeks.

So what do you say about losing a beloved friend? First and most, I would say that my life has been richer for having had her in it. She was caring, kind, wickedly smart and oh so funny! She was the quiet one in our group, but then she’d just shock you with the wittiest, funniest observation at the least expected moment. So many times she made me – made us all – laugh until tears ran down our faces.

Even when she was in pain and foggy from all the drugs, she always wanted to know how everyone else was doing. In these last months, we’ve had many hours of phone calls, sometimes talking about important things, but usually just talking about silly things and funny memories. Sometimes she was too fuzzy from the drugs to talk, but other times she had much to say. We had some laughs, and we certainly had some tears, too. I wouldn't trade a single one of those phone calls for anything.

She faced death with a courage and strength that awed me. Today I am grieving the loss of my friend. Tomorrow I will focus on the many, many happy times we had together. That is what she'd want.

Rest in Peace, Lynn. You are missed and loved.

Both Sides Now

2010-03-15T11:45:00.001-04:00

A Joni Mitchell song, and also the state of my morning. Why, you ask? Well, I had an appointment this morning with the dentist to get teeth cleaned and checked. The dentist informed me that I had a filling that needed to be replaced and that he could do it this morning - well, no use waiting, is there. So, he numbed me up and proceeded to do his dental thing. Now, I should mention that the work took place on the LEFT side of my mouth, which happens to be the only side that works properly.

So loaded with Novocain, I toddled home and fixed myself a cup of tea. Bad move - hot water all over the front of me, gushing from both sides of my mouth. Not good dating behavior.

Unrelated bit of humor: a few nights ago, as we were getting ready for bed, Willie summoned me over to the window, where he was furtively peeking out the blinds. Now, it's pitch black out here, no street lights. However, there was a car in the middle of our road with headlights on, easing forward and then easing backward. It seemed odd until we noticed the possum in the middle of the road in front of the car. Every time the car would creep forward, the poor possum would panic and turn around. And if you are unfamiliar with possums, they move very s-l-o-w-l-y. The car/possum dance went on for several minutes before the possum got safely off the road (and into our yard...yay) and the car was able to proceed down Tallyho. Ah, moments in nature. A huge metal object brought to a standstill by a small furry creature with a big long nose...

Every Now and Then

2010-03-08T13:36:00.002-05:00

... something unexplained and welcome happens. Today, for whatever odd reason, I have only had to use the gel drops (eyes) a couple of times. I have no idea why, but am delighted not to be dropping goop in my eye every 20 minutes. This has happened a few times before and it has never been the signal of any permanent change (like having being able to actually produce my own tears, for example!) but one can always hope. And, even if it means nothing, it is still a nice break!

Now, I am going to tackle my second-ever boule of No Knead Bread! (Thank you, Lorenzo, for introducing me to this method!)

Eye See You

2010-03-06T14:49:00.003-05:00

One of the isometric exercises Jackie has me doing is to slowly close me eyes and keep them closed for a minute. The idea is not to have anything else on my face moving while I do this (the chin and cheek are really anxious to join in on the action.) Also, I need to try to make sure my right eye is all the way closed. (For a couple of months it hasn't been consistently closing completely - leaving a little sliver of white.)

Now, as you might imagine, it is pretty hard to know if your face is completely at rest and your eye is all the way closed when you have your eyes closed. You see the problem? So, the other night while we were laying in bed, I asked Willie to check me while I maintained the eye closure. His job was to make sure there were no inappropriate dimples or and to see if my eye closed all the way. So, I lay there, eyes closed, waiting. And, waiting.

Finally I opened my eyes only to find Willie's eye about an inch from mine! I had no idea he was that close and it really startled me, to say the least. It was just hilarious. We both started giggling and couldn't stop. Which abruptly ended my eye-closure exercise since I couldn't stop laughing long enough to close my eyes. What would we do without these little moments of levity?

Update

2010-03-02T14:19:00.003-05:00

Well, I just got around to taking a couple of pictures of the old face. I want to take pictures every week or so to enable me to see changes. The problem with facial recovery is that it is so SLOW! Changes are subtle, and when you look at yourself every day, the changes aren't always noticeable. So, this is a my little reality check for myself! I will take the same two shots each week - the smile and the eye closure.

I also recorded a short video, which I won't subject you to, so that I can see how my face is moving when I talk. Right now, my face is moving ... oddly. The corner of my mouth, both upper and lower lip just don't move very well, which causes the side of my mouth to sort of drag. I think it will be interesting to see how this changes over the next few months.

Meanwhile, under the category of funny... I was talking with one of my brain tumor buddies last week (a woman who had surgery about 3 weeks before me, and who has also had a slow facial recovery.) We were comparing notes (and, yes, commiserating just a tiny bit) and got on the subject of eyelashes. Yes, eyelashes. When you have bells palsy or facial paralysis it causes the muscles around your eye to sag and droop. Which causes the eye to look king of weird. And, it causes the eyelashes to stick out at odd angles! I had totally forgotten about this until Hope brought it up.

I remember visiting the ophthalmologist about 3 months post op to get a blinkeze eye weight. As he was examining me, he said, "oh, those little lashes on your lower lid are going to get caught in your eye and scratch it, let's just get them out!" And, before I knew what was happening, he had grabbed a pair of tweezers and yanked the disobedient little suckers right out! I was shocked! (However, I didn't feel a thing - the upside of recalcitrant nerves!)

Anyway, hadn't thought about that since it happened, but it sure does make me laugh now!

Reporting From the Frozen Northeast

2010-02-27T14:28:00.003-05:00

If you've been wondering where I have been ... in between 2 plus hours a day of facial "stuff" and digging out from a massive snow storm ... suffice it to say I've been a little busy!

Okay, first a quick update on the face. I am working diligently on my stretches and exercises every day, twice a day as directed. And, I must say that I am feeling a difference. I think my face is starting to look more symmetrical too, but the big difference for me is way my face feels. It feels less tight and the sore spots are decreasing. Yay!! I can now press all over my chin and find only one or two slightly tender spots - as compared to two weeks ago when just about every part of my chin was noticeably sore and sensitive to any amount of pressure. Same improvement with my forehead, although the brow and under-eye areas are coming along slower.

But probably the best news (for me) is that my cheek area is starting to feel less tight! It is pretty hard to describe what my face has felt like for the last 18 months or so - almost as if someone had taken a rubber band and stretched parts of my face into tight little bundles. Does that make sense? It's just been ... uncomfortable. This morning I woke up and realized that my face actually felt pretty good. Woohoo!

And, of course, as the cheek loosens up, the lip starts to quit pulling up. It's still pulling a bit, but SO much better than it was. I can actually keep my lips together, without any teeth showing through on the right side.

Amidst all the facial excitement (well, okay, maybe I'm the only one who's excited...) we have also had a big whallop of winter. Wednesday night we got about 5 inches of wet, heavy snow - the kind that is really a pain in the butt to shovel. Not to be bested by weather, I waited until Willie headed to work, then fired up the snow blower and manhandled it up and down the driveway. I should mention that the sucker weighs several hundred pounds and does NOT turn on a dime. Wow, was I sore afterward! No sooner was that mess cleared, then we got hit with the granddaddy of storms - dumped about 2 feet of snow in a 24 hour period. Yow. I let Willie handle the snow blower for this one and I tacked the steps and walkways. By yesterday afternoon, we were all dug out and I started to appreciate the beauty of a fresh blanket of snow. This is the largest single snow fall we've had since we've lived here, a record I hope we don't beat anytime soon.

So, that's the news from Tallyho Lane.

Pictures!!

2010-02-19T10:12:00.013-05:00

Okay, I promised you pictures ... and here they are. Here is the picture of me the first morning in Jackie's office trying to "gently" close my eyes. Notice the eyebrow (right one is raised), the right side of my lip which is pulled up, and the muscles in the right side of my neck.

Now here is the after picture. Notice how much more symmetrical my face looks - eyebrows even, lip more relaxed, no bulgy muscles in the neck!

Now, here is my "smile" picture from the first morning. You can see that my chin is dimpled and my right eye is tight. You can also see the muscle on the side of my neck kind of sticking up. That whole side of my face is pulling and tight.

And now after! In fairness, I am not smiling as "big" here - I have to keep the movements small and stop just before anything starts twitching or cramping or dimpling.

Update on Wisconsin Trip

2010-02-18T19:43:00.004-05:00

Well, Willie and I arrived back at the homestead at about 11:30 last night. Our last two days with Jackie were as filled with learning as the first one. I will attempt to deliver just the highlights here...

We spent the morning of Day Two going over the stretching exercises again - this time with me doing them as Jackie made corrections. Then, in the afternoon, we got to work on the actual muscular retraining. And, boy, is it a lot of work!

Imagine being able to isolate one small muscle on your face? Yes, it is just as hard as it sounds. I found myself willing my brain to make some small muscle move at my direction. I am happy to say that I was finally able to actually feel my chin when it started to dimple, and actually control it (well, at least to an extent.)

Jackie describes the facial retraining movements as isometrics for your face. The movements are so subtle that someone else might not even be aware of them. For example, on of my challenges is to completely relax my face - Jackie calls it "draining" the face. It takes some time and I am far from perfect at it. After the face is sufficiently "drained", I press my lips together ONLY until my chin starts to pucker, or my eye starts to scrunch or the muscle on my neck starts to tighten up. Ideally, I do this without a mirror - relying on my senses to tell me when something is moving. I am using the mirror to check once I think I'm at the right place. I have not yet been able to tell when my neck starts to tighten, although I can see in the mirror the Platysma (hah! impressed, aren't you?) starts to get tight.

For someone like me who is all about quick results and instant perfection, this is a very trying process. However, I am 100% determined to stay the course.

To start, I am doing two hours of facial stretching (some of which seems to involve most of my hand in my mouth) - broken into two one-hour sessions, morning and night. Then, another 30 minutes to work on the subtle facial movements. So, quite a time commitment. However, as the knots in my face start to subside, I will reduce the amount of stretching time.

It is strangely relieving to know that all of this endless tightness and sore spots on my face are actually real and not mis-firing nerves. It is like I have a bunch of little charlie-horses all over the right side of my face. Hm. No wonder I have been uncomfortable for the last year and a half!

Pictures tomorrow!

Day One

2010-02-16T10:32:00.002-05:00

I'm posting from the Univ of Wisconsin Health Center where we are waiting to begin my second day with Jackie Diels. Yesterday was a long day - six hours! Spent most of the morning doing evaluations of my facial movement, including all the weird (inappropriate) movements. Jackie took pictures and video, so we'll be able to see the starting point.

We spent the afternoon "stretching out" my face! Yep, that's pretty wieird sounding, isn't it? At one point, I am pretty sure I had my entire fist inside my mouth. There were a few places where I was laughing so hard I had to stop. However, the amazing thing is that I could feel a difference immediately!!

Apparently, I have a lot of knotted up muscles all over my face - and this is at least part of what is causing my mouth to pull up and my eye to squint. She is having me work on each of the knotted places - these are the random "sore spots" that I've had all over my face since I started to regain feeling. It was great to finally find out what was causing all those sore spots - they feel very sore to the touch, almost as if I had a severe bruise.

The highlight of my day was when Jackie said that she thinks a lot of the weird movements are caused by these muscle spasms, and not necessariy synkinesis. We'll have a better idea on this as we work on it today and tomorrow. However, that would be great news since muscle spasms are curable whereas synkinesis is not. Which means that I can fix at least some of this. I found myself welling up when she told me this. I guess what I realized at that moment was that I was terrified that she was going to tell me nothing could be done. Wow.

We got done a little before 4 yesterday and headed back to our hotel room It snowed all day, but was a very light snow with less than an inch accumulation. So, since the roads were fine, we headed into downtown Madison to go to Harvest, a restaurant I had read about that features farm-to-table food. Everything is local and/or organic. Very small menu - maybe 10 entrees and 6 starters; however, everything was perfectly prepared and absolutely delicious! And, perhaps best of all - noise level was very low, so we were able to chat through dinner without a problem and I left not feeling frustrated and tired! Yay!

I wrapped up the day with about an hour of facial stretches in the room before we both hit the sack and slept.

So, it was a very good day and I am feeling optimistic.

By the way, Happy Birthday, Dad!!

Off to Wisconsin

2010-02-12T16:38:00.003-05:00

Well, it hardly seems possible, but my appointment with Jackie Diels is finally almost here! Willie and I are flying out to Wisconsin on Sunday and will be spending time with Jackie Monday, Tuesday and Wednesday.

For those who don't know, she is a preeminent neuro muscular facial therapist here in the US. I started to develop synkinesis (abnormal facial movement) about six months ago and we made the decision in early December to make a trip to see Jackie. This was the earliest we could get on her calendar, and wouldn't be my first choice of times to travel to Wisconsin, but ... what can you do? A lot of people have asked what is going to happen over the three days that I am there - well, I don't really know! How's that?

What I do know is that she will be working with me to develop exercises that will help me to retrain the muscles that aren't moving right. Basically what happens is that when the nerves heal, they mis-connect, causing the wrong muscles to move. For example, when I smile, my right eye squints and tries to close. And, if I blink my right independently, that side of my mouth curls up. You get the idea. Left on its own, it would probably get worse. If treated, I can learn to control it. Synkinesis is not reversible, but it is controllable.

Several people have asked if my facial nerves have completely healed. The answer is no, but the parts that aren't working are not very noticeable. My right eyebrow/forehead still don't move (hey, no wrinkles!) and the corner of my mouth doesn't have a full range of motion, which is what causes me to slur sometimes, and to unexpectedly eject food at other times. Yep, I'm a party waiting for a place to happen.

I hope to have some good before and after pictures when I return - if so, I'll post some here so you can see what's been done. And, in the meantime, send some good thoughts my way - direct them towards Madison, WI, please!

Sunday Dinner

2010-02-08T16:57:00.002-05:00

Continuing on the food theme ... yesterday was Sunday Dinner with the Family. Now, those of you who aren't part of an Italian family may not be familiar with this, so listen up. First of all, Sunday dinner is actually more like a late lunch, but with a dinner sized meal.

I have gradually over the years trained everyone NOT to expect the pasta course for our Sunday dinners. I still think I am secretly viewed with suspicion on this, by the way. However, my kitchen, my rules! The rule that you absolutely must have way more food than anyone can possibly eat, however, remains unbroken. So, for five of us, we grilled two chickens. Big juicy chickens. With all of the appropriate side dishes. Sorry, Lorenzo, no cannoli for dessert this time, only fresh fruit.

Another part of the Sunday Dinner tradition is that everyone must talk all at once, and at top volume. Now, if you have two hearing ears, this can be challenging, but imagine for a moment that you only have ONE hearing ear! Yes, all of the sounds come flying at that one poor ear, all at once. The end up is that it just sounds like a bunch of random words. To make it more fun, because everyone is trying to talk at once (hey, they have a lot to say), the volume keeps escalating as each person strives to be heard above the din and roar. Oy vey. (Yes, that's for my Jewish friends because your Sunday Dinners look suspiciously like this, don't they?)

Ah well, in spite of the noise and the over abundance of food, it is a part of the Italian family tradition that I enjoy - even if I have to retreat to my Cone of Silence when everyone leaves ...

Bon Appetit!

The Need to Feed - Reposted

2010-01-29T10:20:00.000-05:00

Odd, I posted this a few days ago, and it dated it about a month ago, so let's try this again...

So here's the deal ... I married into an Italian family 9 years ago. And, it has been a wonderful and enriching experience. However, one thing still puzzles me and that is the Need to Feed.

Whenever we go to my in-laws (or any other family member. friend or casual acquaintance) we MUST bring food. And, it almost doesn't even matter what the food is, just so long as it is edible. A box of grocery store cookies will qualify. Now, maybe I am an unsophisticated heathen, but in my family and circle of friends, you just show up! (And in my younger and poorer days, I would show up with laundry.) And this whole food-giving thing extends to visits of any duration - even a quick stop for coffee requires some sort of food.

And it works in reverse, too. Whenever my in-laws come over for dinner or a visit, my mother-in-law has to bring something to eat. And, if I tell her that she can just show up, that the real gift is spending time, it causes all sorts of stress and anxiety. It is just unthinkable to show up empty handed!

It complicates the whole visiting thing - you can't just swing by to say hello. First you have to find someplace that sells food so that you can arrive bearing food. And, the food must be served during the visit! Don't even think about saving it for "later!!"

This has all caused me to question my own visiting protocol. Are my friends and I complete losers because we visit without food? Have we been transgressing some unspoken "food rule" all these years? OMG, are other people secretly saying "oh, look at that poor, clueless woman - showing up without food?" Crap.

Schwannoma Shuffle (or Slide)

2010-01-20T15:46:00.002-05:00

Some of you may not know that acoustic neuromas are also sometimes called Vestibular Schwannoma. Okay, pretty much only surgeons refer to them as that, and now you can clearly see why we lay-people call them ANs. But I digress.

The use of either vestibular or acoustic all refers to the 8th cranial nerve (stay with me, it gets more interesting) which controls hearing and balance. I am now minus this nerve on the right side which means that I'm deaf on that side (which you already know) and my balance is occasionally challenged. Which leads me to today's post.

Do you know a dance called "electric slide?" Yes, the very one that we forbid to be done at our wedding. It's one of those group things - hop to the right, two steps left, etc. I'm sure some people love it, but I'm not one of them. I really have never needed any help to look like a clumsy idiot. And now I need even less help.

The balance thing usually manifests itself (for me) in a stumble, which in turn sometimes results in a fall, but that's another story for another day. Today's story is really about the stumble. Picture it - you momentarily loose your footing - you know, a little stumble? Most people can recover quickly from this with no one the wiser. Not me - when I stumble, it turns into a full-fledged slide and shuffle. So the other day when I found myself shuffling/sliding quickly across the kitchen floor, I had a vision of doing the electric slide. After all these years of faithfully avoiding doing that damned dance, now I seem to do a version of it spontaneously. Crap, I'm doing the Schwannoma Slide. Isn't that just irritating as hell?

A New Direction

2010-01-15T11:04:00.002-05:00

So, the whole board of directors thing didn't work out, for a number of reasons. And, rather than feeling disappointed, I actually feel strangely relieved. Surprising, right? I truly believe, though, that all things happen for a reason. And, this clears the way for me to stop procrastinating about writing a book. I now have NO excuses! So, this week, I started the book outline - gosh, I feel so professional!

I am going to use my own experience in dealing with this life-changing event to write a book that I hope will help other people survive their own life changing medical events. Kind of a survival manual. I want to inject as much humor as possible into it, while providing some practical advice as well. Haven't found the right title just yet, but am working on a list of ideas. If you have any suggestions, please share them!! I'm all ears (okay, in actual fact I am ONE ear, but you get the idea.)

Things I Didn't Hear...

2010-01-12T10:03:00.002-05:00

Ah, the joys of being single side deaf! Directionality is, of course, one of the bigger challenges. We all have stories of running all over the place trying to identify the source of a ring or beep. If anyone were watching us do this, they'd be doubled over in laughter. In my case, I am usually muttering to myself while running...

Last night I was watching TV when I heard one of our cell phones ringing. I quickly muted the TV and the damned cell phone quit ringing (before I could locate it of course). About 10 minutes later, the cell phone started ringing again, and again I muted the TV - no ringing. Hm. Yep, it was a cell phone on the TV the whole time. Duh.

This morning I am sitting in my office quietly working while the young lady who cleans for us is making the house sparkly. The cats always get freaked out by the sound of the vacuum, so they are hiding under the bed in the spare bedroom (directly upstairs from my office.) Now, the cats are still in a state of semi-Jihad withe each other, so when I heard a growling noise, I quickly headed upstairs. It wasn't until I was halfway up that I realized it was my stomach that was growling. No kidding. Do you think I could make this stuff up????

Cat Hell - Parte Due (Part Two)

2009-12-29T14:55:00.002-05:00

Yep, just when you thought it might be safe...

I mentioned in my last post that Rocket was having an issue - basically, he had sores on his little furry face and was scratching himself like crazy. The end-up being that the sores wouldn't heal. Yuck. So, the traveling vet showed up, trusty assistant in tow, early last evening. In preparation for the "big event" I had Willie take Rock-man into our bathroom and get him settled (ha!)

When the vet arrived, I took her upstairs, opened the bathroom door and basically shoved she and her assistant in, then slammed the door. I should mention that I stayed out in the sitting room, leaving Willie to deal with the ensuing event on his own. Now, I should also mention that the minute Phoebe got a whiff of the vet, she flew out of the bedroom, fast and low, and went into hiding under the coffee table. She clearly remembers the adventure of a few weeks ago!

Back to Rocket - apparently he was ensconced on top of the dryer (we have a laundry room right off the master bath) and assumed the crouching position immediately. The vet took a peek at the wounds, although from a safe distance. The entire time, Rocket was growling in a deep baritone. Deducing that a cortisone shot was just the thing that was needed, the vet unsheathed the needle, all to the low rumble of Rocket growling. She apparently created a small diversion, then jammed the needle in. In response, Rocket took a swift whack at her with all claws unsheathed. Amazingly, the vet moved even faster, thereby avoiding severing a limb. Willie said that the speed of both the cat and the vet was nothing short of amazing - a veritable blur of motion!

By this time, Rocket was flat on top of the dryer, trying to make his 12-pound self melt into the dryer. All the while emitting a menacing growl. We decided that the best thing to do at that point was go out to dinner and let everyone in the house calm down. Happily, things seem to be back to normal today. Until the next "event" ...

The SSD Twirl

2009-12-27T13:01:00.002-05:00

This falls under category of funny single-side deafness (SSD) moments.

The Dark Lord (Rocket, the black cat) has developed what we suspect is dermatitis which started looking very bad yesterday (this isn't the funny part). I decided that I needed to call the vet and leave am message to see if we can get her over here to treat him (still not funny, hang in there). So, went to grab my cell phone. Hm, not in its usual place. So, I started searching for it. Dad (who is still here freezing his butt off and wishing he were back in AZ) suggested that he use HIS cell phone to call me - we could then trace the sound of my phone ringing and locate the phone. Sounds good!

So, he proceeded to call me ... and my phone proceeded to ring. Now, at this point, I should mention that my dad is also SSD. And, one of the challenges of being deaf on one side is that you really can't determine what direction a noise is coming from. So, there we are, both in the kitchen, hearing my phone ringing at top volume. And we began twirling around. Both of us. And, then we realized how totally silly it was - two SSD people, neither with any ability what-so-ever to locate the direction of the noise. We both hit that realization at about the same moment - looked at each other and burst out laughing.

Footnote - we DID find the phone eventually.

Merry Christmas

2009-12-25T12:41:00.002-05:00

It is Christmas day - and we are having a white Christmas here in NJ. We've got a fire roaring (well, maybe just sighing) in the fireplace and are waiting for Willie's parents and sister to arrive. My mom and dad got here on Monday - direct from Phoenix, AZ. Yep, they left warm sunny weather and shorts to spend the holiday with us in freezing, white New Jersey.

We've got a ham in the oven and a bottle of wine on the table. Good food, family ... what more could anyone ask for?

Merry Christmas!!

The Need to Feed

2009-12-17T10:29:00.004-05:00

So here's the deal ... I married into an Italian family 9 years ago. And, it has been a wonderful and enriching experience. However, one thing still puzzles me and that is the Need to Feed.

Whenever we go to my in-laws (or any other family member. friend or casual acquaintance) we MUST bring food. And, it almost doesn't even matter what the food is, just so long as it is edible. A box of grocery store cookies will qualify. Now, maybe I am an unsophisticated heathen, but in my family and circle of friends, you just show up! (And in my younger and poorer days, I would show up with laundry.) And this whole food-giving thing extends to visits of any duration - even a quick stop for coffee requires some sort of food.

And it works in reverse, too. Whenever my in-laws come over for dinner or a visit, my mother-in-law has to bring something to eat. And, if I tell her that she can just show up, that the real gift is spending time, it causes all sorts of stress and anxiety. It is just unthinkable to show up empty handed!

It complicates the whole visiting thing - you can't just swing by to say hello. First you have to find someplace that sells food so that you can arrive bearing food. And, the food must be served during the visit! Don't even think about saving it for "later!!"

This has all caused me to question my own visiting protocol. Are my friends and I complete losers because we visit without food? Have we been transgressing some unspoken "food rule" all these years? OMG, are other people secretly saying "oh, look at that poor, clueless woman - showing up without food?" Crap.

Cat Hell

2009-12-15T15:12:00.006-05:00

Life here on Tallyho Lane is rarely ever dull. Take this week, for example... we had an appointment yesterday for a brand new vet. Not just any vet, either - this one makes House Calls!! Now you might wonder why that's important? Briefly, Rocket (our black cat) is a very, very bad patient. He is certain that the vet is out to kill him, and determined not to go down without taking someone out with him. The last time we had him at the vet, we had him sedated and he STILL roused himself to attack the vet and the technician. All of which is accompanied by the most hair-raising screaming and snarling that you've ever heard. So, the long and short of this is that the veterinary facility that we take the animals to suggested that we find another option for Rock-man. The big red Paw sticker on his file is probably an indicator.

What further complicates things is that when we take Phoebe, our younger cat, to the vet, she comes back smelling like something scary and Rocket immediately launches a Jihad which sometimes last for days. Complete with hissing, screaming, snarling, etc. All night long.

So, I found a woman here in the county who has a veterinary house call practice. Excellent! Made an appointment to get both cats inspected and vaccinated. As the day approached, I was filled with trepidation.

Well, the day finally arrived and the vet showed up with her technician in tow. Rocket was hanging around downstairs, so we introduced everyone. He was polite but reserved - definitely withholding judgment. The vet suggested that the "deed" was best done in a bathroom (thereby eliminating the opportunity for the cat to run away and hide.) We decided to get Rocket first, so into the master bathroom we all went. Then, all three of us got down on the floor with Rocket - yes, three grown women all huddled on the floor with one 12 pound black cat. There was lots of petting and scratching (the cat, not us) while she inspected eyes, ears, teeth - all fine. Then, she uncapped the first syringe... and the war began. Rocket screamed and leaped off the floor - knocking the needle right out of the vets hands - but not before it gashed her on the way by. We corralled Rock again (after wrapping the vet's bleeding hand) and tried covering him with a towel. The tech basically got him in a full-nelson against the bathroom door, covered with a towel (the cat, not the vet.) Rocket, knowing that death was close at hand, put up the fight of his life. The screaming was the kind of noise that makes all the hair on the back of your neck stand up. The vet, fortunately, was able to lift a corner of the towel and jab the cat. Got both vaccines done before he escaped to the corner of the bathroom counter, hissing and growling. We quietly left the bathroom.

Phoebe, of course, was outside the bathroom and heard the entire thing. She took one look at the three of us and took off. I was finally able to lure her within reach with treats, snatched her up and headed to our small half-bath downstairs. The three of us - plus the cat - crammed in the tiny bathroom. Before we could get the door closed, Phoebe escaped. More chasing and begging. Finally got ALL of us back into the bathroom where things proceeded without a hitch. Phoebe, fortunately, is less concerned with maiming and more concerned with just getting away.

We let Phoebe loose and she headed for the bedroom. When I went up to check (and to make sure Rocket was not going to attack Phoebe), I found them both as far under the bed as they could go, side by side, not budging. Two little faces looking back at me as if to say ... "how could you??"

As is the way with animals, within an hour, all was forgotten and everyone was in good spirits. And, best of all - the vet agreed to come back next year and do it all over again!!!

Gosh, I can hardly wait to see what happens next...

Facial Retraining - Next Phase

2009-12-10T17:50:00.002-05:00

So, for the last few months, I've been showing more and more signs of synkinesis. It started with the chin dimple - that actually started in the summer. Now, my right eye is trying to close when I smile. And, if I blink my right eye (like a wink), that side of my mouth tries to pull up. I know where this is all leading, of course. And, I am determined to get ahead of it.

So, we will be traveling to Wisconsin in February (I know, I know - Wisconsin -winter - I get it!) to spend 2 1/2 days with Jackie Diels. For the uninitiated, she is considered to be the leading facial retraining expert in the US, if not the world. She has trained many of the top NMFRs and still sees patients herself. Willie talked to her on the phone last week, and she feels certain she can help. We attended a workshop she conducted at the Acoustic Neuroma Assn Symposium this past August in Chicago and were very impressed with what she said, and what she's been able to do. So, I am optimistic that with some hard work, I will be able to keep the synkinesis at bay and even improve it.

Of course, there is no "cure" for synkinesis. It will require a lifetime of facial exercises, and possibly botox injections (although hopefully NOT). For anyone reading this who isn't entirely certain what the heck synkinesis is - in simple terms, it means that the facial nerves in my face "mis-connected" as they were healing and now my face has what is euphemistically called "inappropriate movements." Left untreated, they can and usually do get worse. With treatment, I can literally retrain the muscles to move appropriately, thereby smacking those pesky, disobedient facial nerves.

To tell the truth, I've been trying to ignore this for awhile - foolishly hoping that the problem would miraculously disappear. Thank goodness that Willie was having none of it, and took the initiative to call Jackie himself. (Thank you, honey!)

As we get closer, I'll post some pictures of my face making it's little grimaces. Then, I'll post some more pictures after I get back from Wisconsin so you can see the difference (I'm optimistic). One more step in this journey. More fodder for the book that is percolating in the back of my mind.

I talked to another acoustic neuroma patient this afternoon - she's having surgery with Golfinos and Roland (my surgeons) on Jan 6, and is at that stage where she is very anxious. Boy, can I relate to that. We had a laugh about the obsessive need to micromanage every single detail. Actually, she sounds a lot like I did when I was in the final month. We had a good talk and it was a good reminder to me about how far I've come.

I Stand Corrected...

2009-12-05T09:34:00.002-05:00

Well, I just got an email from the ANA BOD saying that they've had more applications than ever for the 2010 board and need a few more weeks to review and make a final decision. The good news is that they will have a talented pool of people to draw from and I am sure they will pick the best people. The bad news is that it may not be me! :( Ah well, wait and see. I feel pretty optimistic about it, though.

This weekend is the annual gathering of my closest group of friends for tree trimming, glu-wein drinking, and general festivities. We are expecting a little snow today - maybe an inch or two, so that will lend to the air of holiday festivity. Good times!

Giving Back

2009-12-01T13:08:00.002-05:00

Like most people, over the years, I've wanted to find a cause that inspires me - some way in which I can give something back. I've considered and rejected a number of organizations/causes - some because they don't inspire me and others because they really don't do as much good as I'd like. But, in the last year and a half, I've found something that inspires me.

When I was first diagnosed with an acoustic neuroma, I got online and started reading all I could find on this thing in my head. And, one of the very first sights I found was the Acoustic Neuroma Assoication website (yea, there's an actual association for our specific brain tumor!) Willie posted the first question (bravely) on their patient forum and almost immediately, people responded. This led to us having a phone conversation with a patient who'd has surgery the year before. His generosity in spending time to talk to us and sharing his story still touches me very deeply.

I became a "regular" on the ANA forum and I met some really wonderful people along the way (hey, Lorenzo and Kay!). I felt like I had a whole community of friends who understood what I was going through, who weren't bored or annoyed with my millions of questions, my fears, my concerns. And, I have tried to give that same support and friendship to others who find their way to the forum - most dazed, scared, confused.

Fast forward - several months ago, I decided (with lots of support and encouragement from Willie) that I would apply for a seat on the Board of Directors of the ANA. And, this morning, I received word that they want me! I've finally found my cause. I am elated! Yes, it's a time commitment, but when I think about all that I have gotten from this group - well, wow. I am honored to be able to be a part of it.

This brain tumor adventure has forever changed my life; it has a way of doing that for most of those affected by it. But, hopefully I can use my experience in a positive way, to help other people.

Turkey and Italians

2009-11-28T09:18:00.002-05:00

First of all, can I just say that the best part of Thanksgiving is the time spent with family. We had a smallish gathering this year, just Willie's parents, sister, aunt and two cousins. However, you would be totally shocked by how much noise a group this small can make!

And,those of you who are SSD will appreciate how overwhelming it is when lots of people are talking, all at full volume! At some point during dinner, I think my brain just gave up on trying to decipher what people were saying and all I heard was a cluster of unrelated words and a general roar of noise. It was my brain's little way of saying FU to me! The brain always trumps the body.

Anyway, in spite of much noise, it was a good day - made even better by the fresh Canolis that Aunt Rosie brought from Queens! Even after gorging on turkey and the trimmings, we fell on the canollis like a pack of starving wolves. Oh, and I should also mention that Cousin Peter brought a huge tray of anti-paste which was very well received. Actually, as I think about it, the turkey was kind of an afterthought.

We cracked open two bottles of wine - a bottle from my recent batch (malbec/cabernet/syrah) and a bottle of Willamette Pinot (sheer heaven on the tongue). Willie's dad took one taste of the Pinot and pronounced it "table wine". He wasn't impressed. He did, however, love the rather more rustic malbec blend. Which left the pinot completely in the hands (and mouths) of Willie and I. Everyone was happy.

When the evening was winding down, I retreated upstairs to my "cone of silence". Once everyone was loaded into their cars and safely on the road, Willie joined me int the "cone". We sat in total silence for at least an hour - pretty funny when you think about it!

I hope that all of you in the USA had an equally wonderful Thanksgiving - and those of you in the other parts of the world - well, I hope you at least had a good bottle of wine!

Salute!

Bobble Head

2009-11-18T16:54:00.002-05:00

Or, as some have called it - wonky head. Whatever you call it, I've had it for the last two days. It's freaky and kinda fun all at once. Okay, I may be exaggerating on the "fun" part, but still ...

So what exactly is wonky or bobble head, you ask? It is when you feel like you have a giant wet ball of cotton in your head. As a result of having this mass of cotton where your brain should be, your head feels like it might roll off your neck at any moment. And, because no amusement ride would be complete without sound effects ... there is a whooshing sound in my deaf ear when my heart beats. Yeah, I know - it's impossible for me to hear when I am totally deaf on that side. You're just gonna have to trust me on this.

Yesterday I was a bit unnerved by the whole thing - that would be the freaky part. But today, I kind of got a kick out of the bouncy head feeling - that would be the fun part. However, I think I'm over it now. I am hoping to wake up tomorrow with cottonless head!

Hidden Clues

2009-11-16T15:30:00.002-05:00

I read two great books this weekend, both about brain tumor survivors: "I Had Brain Surgery - What's Your Excuse" and "Curve Ball - When Life Throws You a Brain Tumor". I thoroughly enjoyed both of them - the women who wrote them displayed great humor, which I think is mandatory in the brain tumor business. Both authors talked about how they discovered their brain tumors. In both cases, they had missed or ignored early signs. Which got me to thinking about my early warning signs - yes, the ones I ignored or failed to recognize...

Probably the earliest clue I had was a good two years before I was diagnosed. I had decided that I wanted to include yoga classes in my weekly quest to do things for myself. And it really pissed me off that I was the only one in the class who, no matter what, could not do a tree pose. It didn't matter how much I flailed around, there was just no standing peacefully on one foot whilst the other rested on the opposing knee. Nope, not gonna happen. I remember thinking at the time "Jeez, I'm barely 50 and my balance is already starting to go."

Little did I know that this was the first sign that something had invaded my head and was getting cozy with my auditory nerve. Huh.

For at least a year before diagnosis, I was noticing a decline in the hearing on my right side. At some point, I switched my headset from my right to my left ear. And I ignored the occasional "swooshing" noise in my right ear. Well, my dad had lost the hearing in one of his ears when he was in his 30's - I figured it was some hereditary thing. Best to just ignore it. It wasn't until Willie locked himself out of the house one morning and activated the burglar alarm when trying to re-enter that I got worried. You see, the burglar alarm was going off for several minutes and I never heard it. Granted, I was sleeping on my left side with my faulty ear facing the world. But still... I mean, have you HEARD those damned things?? They are like air raid warnings. Yep, that kinda freaked me out. I made an appointment with an audiologist that very day fully expecting that I would be fitted for a hearing aid. Instead, I was fitted for a fat graft and a titanium plate. Talk about getting the fuzzy end of the damned lolly pop!

Never crossed my mind that I had a tumor growing in my cranial cavity! Now, I don't want to scare anyone out there who may be suffering balance and/or asymmetrical hearing loss ... I'm just saying you may want to pay attention.

You know that expression that when you are a hammer, every problem looks like a nail? Well, when you've had a brain tumor, every symptom looks like a cranial invader. I think everyone in my family rushed to see an audiologist after my little adventure. (I'm happy to say, not a brain tumor in the bunch!)

Balancing Act

2009-11-11T17:11:00.002-05:00

Catchy title, right? Well, I've been thinking quite a bit lately about balance. It really started on "The Cruise" last month when my balance took a major hit. I sometimes forget how much I rely on sight to compensate for the now-missing balance nerve on my right side. It leads to all kinds of funny situations, and a few hair-raising ones. Mostly funny, though.

The ship, of course, was particularly problematic because of all the colors and patterns that cruise ship companies seem to find necessary - never mind the 20 foot swells and gale-force winds! The patterns alone would have been enough to send my brain running for cover. Interesting, however, how quickly one adjusts. What I have learned is that I have to give the gray matter a chance to settle in for awhile with new surroundings. Kind of like the way I need to let Willie settle in with a new idea (like taking a vacation to Egypt, for example.) Without proper time to adjust, the brain basically gives you a great big finger.

The whole balance thing also doesn't work well in the dark. For example, several weeks ago I was out walking our neurotic collie at night. She, of course, wanted to go to the side of the house where there are no outside lights - and we live in the country where it is pitch black at night. Well, you can see what the problem is. I step onto our lumpy lawn, stumble, and go right down. Yep, on my hands and knees in the dark. I know the damned dog was laughing the whole time.

Last Saturday, Willie and I went to a very nice black-tie event. We arrived well into the cocktail hour - about 200 people (all in formal attire) were milling about in a space designed for maybe 100 people, noise level through the roof - and I was already tired. I think I got about 10 steps into the writhing mass of people when my brain said "not gonna happen!" Fortunately, Willie steered me to a place along the wall where I was able to enter into negotiations with my brain. I eventually won. And it was worth it because they had fillet Mignon for dinner - with a nice glass of Cabernet!

The other day I had lunch with a friend, and as I was hugging her goodbye, I realized that I was losing my balance. I was starting to slowly tip forward, like a tree being felled in the forest. And all the while I was desperately clutching my friend! I could feel it happening, but couldn't do a damned thing to stop it. Fortunately, she kind of gave me a push backwards and I regained my balance. Honestly, it was so funny - I had this momentary vision of us both falling down in a heap in the parking lot! Well, that certainly would have gotten everyone's attention.

So, more entertaining experiences. And I am sure everyone out there who has done battle with an acoustic neuroma will have their own funny balance stories to share....

The Revenge of the Pirate Lobsters

2009-10-31T17:50:00.002-04:00

Okay, so I have been thinking back on our cruise and specifically the part about the lobster line becoming entangled in the propeller of our massive ship. And, yes, I have determined that it seems pretty far-fetched; one could even say "sketchy." Here is what is making me suspicious ...

Starting in Bar Harbor and continuing through Saint John and Halifax, we saw thousands of lobster buoys bobbing about in the water. Now, you need to understand that a single lobster trap can hold quite a few lobsters. When you do the math, you are looking and thousands upon thousands of lobsters getting scooped up out of their comfortable, cozy ocean and ending up on someone's plate. Frankly, if I was a lobster I would be plenty pissed about this.

And, in fact, I might rally some of my lobster brethren and launch a counter strike. Think about it ... what could be better than crippling a massive ocean liner!!?? The ultimate lobster terrorist strike! I picture a gang of lobster-pirates (little eye patches in place) carefully placing the lobster line all around the blades of the propeller while our ship was resting peacefully at the dock in Halifax. You know, they have very handy and dexterous claws, so this isn't at all far-fetched. Hey, the line didn't seem to be on the ship when we sailed into Halifax, now did it?? How else to you suppose it got there? Ha.

It is only by sheer luck that we didn't go down. I'm sure of it! We thwarted those crafty little lobsters, by only by the skin of our teeth (as it were). I caution vigilance if you are traveling to lobster areas. You never know what those sneaky little bastards will get up to next! They've got those periscope eyes you know...

BEWARE!!!

The High Seas

2009-10-27T16:08:00.003-04:00

Back from vacation and not quite sure where to start... Willie and I took a 7-day cruise from NYC up through New England and Eastern Canada. It was the most eventful cruise we've been on!

So, I'll start with a brief recap of the highlights of the cruise.

Day 1 (Saturday) - set sail from NYC in the early evening - all peaceful and we enjoyed a great dinner of filet mignon with a bottle of Brunello. So far, so good. The picture is us while we were still safely docked in Brooklyn - unsuspecting and unafraid!

Day 2 - (Sunday) at some point during the night, our idyllic sea cruise turned into something else entirely - 70 MPH winds (yes, that's "gale force" in sea-speak) and 20 foot swells. And, yes, for those who are wondering - an giant ocean liner is no protection against winds and waves! We ventured up to the top deck to have breakfast (me clutching railings, chairs, and passerby's to try to maintain balance) where the ship was swaying like a willow in a windstorm. Several bites into breakfast, Willie broke out in a sweat and turned green. We retreated to our nice cozy mini-suite to ride out the storm.

During the day, our captain, who by strange coincidence was the same captain that we had on our Mediterranean cruise 2 years ago, kept coming on the PA system during the day and evening to give us updates. In this very thick Italian accent, he kept assuring us that the "shippa" was handling well and that we were still trying to get out of the low pressure system. (As he cautioned us not to go on any open decks or balconies!) When he came on at 8 pm, he assured us that we would not hear from him again this evening. He told us the same thing at 9:15 pm. And, the next morning, when we finally saw calm seas and blue skies and the Boston Harbor - he assured us that the big crack on Deck 15 was nothing that should cause us any discomfort or concern!! Yes, folks - the damned ship cracked. That entire part of the deck was cordoned off with yellow caution tape and there was a giant metal plate bolting the two halves of the deck together.

Days 3-4 - Not-withstanding the cracked deck, this part of the trip was uneventful and calm. Enjoyed our ports in Bar Harbor and St John - managed to scarf down some fresh oysters, so yours truly was happy!

Day 5 - Nice day in Halifax... or so we thought. Things started to take a turn for the worse when we noticed at 7 pm that we were still docked (ship was supposed to set sail at 6 pm). At around 8 pm, our fearless Captain Fortezze came on to alert us that another storm was moving in AND we had a lobster line wrapped around our propeller. Well, isn't that just freaking great? Oh, and by the way, the special in the dining room was lobster. No kidding.

By the time we sailed out of Halifax, the winds in the harbor were already gusting over 30 MPH, so we knew we were in for another rough night. Oh, and did I mention, we both had come down with colds by then?

Day 6 - Another day getting buffeted about the ocean. Me clasping anything I could get my hands on to avoid falling; Willie looking a bit green around the gills. we did, however, venture into one of the restaurants aboard to have bangors and mash for lunch! And we had a very nice Chilean sea bass for dinner in the Italian restaurant. It takes more than rough seas to keep us down!

Day 7 - kissed the ground in Brooklyn upon disembarking ... in the rain.

Stay tuned for my tips on surviving a cruise with only one balance nerve... !!!

A Four Letter Word

2009-10-15T16:34:00.004-04:00

Yep, that's right - a four-letter word ... SNOW. On Oct 15. In New Jersey. Was this predicted in the weather forecast? Of course not. In fact, as recently as an hour ago, when I went on The Weather Channel, they said it was raining. (It's been snowing since about noon today.) I'd like to add the weather people to the same list as the TCA people. That would be the Moron List. Apparently they don't know who they're dealing with here! I've had a brain tumor, for crying out loud - you don't want to mess with me!!!

Not only is it snowing, but my dog is wearing a giant Elizabethan Collar and a diaper. Yep, that's right big ruffly collar and diapers. Everyone wants to be me.

Now about the dog - we rescued her about 6 years ago, in 2003. At the time, she was 5 years old. She's a beautiful black, tan and white collie - pedigreed no less. What a bonus for a rescue dog (or so we thought.) Turns out that Carrie had had a sort of rough life, having been bounced around to quite a few homes in her 5 years - the end up being that she's quite anxious and insecure. In a word, she's neurotic. And, as an added bonus, she's slightly incontinent and wears a diaper to circumvent dripping.

We lovingly refer to her as "Crazy Dog" and for good reason. She practically has a nervous breakdown every time I go in the kitchen (we've never figured this one out) and really doesn't like it much when Willie and I sit in the living room and watch TV. And, that's just the beginning. A week ago, apparently in some sort of nervous fit, she started licking her front leg - before I realized it, she'd licked a raw spot on it. Yuck. So, we tried Bitter Apple spray, which is supposed to repel dogs - Carrie apparently loves it. We tried covering the raw spot with a gauze dressing (which I happen to have a supply of from last year's big brain tumor adventure) which she gnawed off. So, I resorted to a big foam collar that keeps her mouth away from her paws. Look ridiculous, but it works. Don't believe me that it looks ridiculous - see for yourself.

Carrie's mom...

Flying Petri Dish

2009-10-09T10:47:00.003-04:00

Okay, so time to back up a bit and talk about flying. No, not the kind you do in your dreams, but kind where you are squished into a very small seat and are propelled through the air at about 400 miles per hour, all the while sharing germs with every other passenger on board. Yes, I compare it to flying in a petri dish.

Think about it. A few weeks ago I boarded a flight from Newark to Seattle, flight time 6 hours. There were NO empty seats on the aircraft. And, is it me, or are they making the seats even smaller and closer together now? Honestly, my knees were pressed into the back of the seat in front of me. I wondered if I should compliment the guy in that seat on his nice spine.

Okay, so about the petri dish reference...once the pilot cranks up the engine and "closes the main cabin door" you start breathing recycled air. Yep, recycled as in - it contains everyone else's germs. In my case, I was actually seated next to Patient Zero - hacking and sneezing the entire 6 hours. No surprise when I got sick 4 days later, was it? In the old days, I might have been able to move to a seat a little farther from the epicenter of the petri dish, but in this case, short of breaking into the pilot's cabin, I was just plain screwed.

So this got me to wondering, should we demand mandatory masks for everyone flying? Should we all be issued our own little private oxygen tents? And, while we are at it, can we please require that every passenger pass a "Proper Boarding Exam"? You know who I am talking about. The neophyte traveler who insists on standing right in the middle of the aisle while he/she rearranges everything in the overhead bin - while other passengers are stacking up behind him/her. I think that you should only be allowed one slip-up on this particular issue - if you are a chronic aisle blocker, no flying for you!! In fact, you will be required to attend "Remedial Passenger Boarding Classes." So there. And while I am on a roll - no egg salad sandwiches on the plane, please! They stink up the whole surrounding area of the petri dish.

So, what do you think - what else would make flying better?

A Memory Day

2009-10-02T18:00:00.003-04:00

I've always hoped that when I am old and gray and sitting in the rocker, I'll have full access to my memories. And, I especially want to dwell on all the happy memories I've accumulated with family and friends.

Last weekend was definitely a Memory Weekend. My friend Ellen and I flew to Seattle bright and early in the morning - a long six-hours cooped up on a very full flight. That afternoon, we drove over to the Ballard Care center to visit our friend Lynn. When we arrived, she was sitting up in bed and had very carefully put on all her makeup, including lipstick. I am not sure why, but that just touched me in a very special way. Lynn's dearest friend of over 25 years, Kura, also flew out - and we didn't tell Lynn in advance so it was a comlete surprise when we walked in the door with Kura in tow. My golden memory of this day is the look of total surprise and joy on Lynn's face when she saw Kura come through the door. Her chin literally dropped - it was priceless.

The next day, we had planned a surprise birthday celebration for Lynn - it will be her last and we all wanted to make it something special. It was also important that it be in our own "grand tradition" with plenty of gifts, balloons, champagne and chocolate. She was totally surprised as the guest started arriving, but also delighted. Ellen and I got there well ahead of anyone else, so early that Lynn had not yet "put on her face". It was a nearly indescribable joy to watch her go through the process of carefully applying her makeup. She told stories throughout, and stopped frequently to make small adjustments or just to rest for a moment. There was something so deeply sweet and normal about this small thing - it is a memory that I will always treasure.

I took many pictures which will remind me in years to come about this special weekend - and there are also those little special moments that will just live in my memory. This is what really matters in life - spending time with those you love. Cherish your own memories, and keep making more of them.

The C Word

2009-09-24T19:06:00.002-04:00

I have borrowed the title of this post from a friend who has a blog of the same name. She happens to be the sister of one of my very closest friends, Lynn, who is in the final stages of terminal cancer. So, I guess you know what the C stands for.

Lynn was diagnosed over 5 years ago and at the time her doctors told us - prepare for months, not years. Well, she proved them all wrong - she's had 5 relatively good years. Sure, she's had endless rounds of chemo and radiation plus a few experimental things. By almost anyone else's standard, her time may not have looked all that good - but she was just not ready to call it quits. Last year, she moved from NYC to Seattle, where her mom and two sister's live. She had reached the point where she could no longer manage her 4th floor walk-up. Her departure from NYC left a hole in the lives of her friends, me among them. I can only imagine what kind of hole her passing will leave.

A couple of months ago, the doctors just ran out of things to throw at this cancer. At the time, they said it would probably only be a couple of months. Once again, Lynn has her own time frame.

Anyway, her 60th birthday is next week and three of us are flying out to have a little party with her at the nursing facility. She is bedridden and can't sit up, but her mind is still sharp, in spite of the constant morphine. And, I know she is going to regale us with funny stories that will make us all laugh. And I also know that we will all shed private tears because this will be our last birthday celebration with Lynn. We have so many wonderful memories built over so many years, and this will be the final set. I can't wait to see her.

And, so that I can find some good in this, I hope that any women who read this will make a promise to get routine gynecological care. You see, my friend was diagnosed with Stage IV cervical cancer - a cancer that, if detected early, could have been cured. She was one of so many women who were "just too busy" to see the doctor each year for a PAP test. Such a simple thing, but one that can save lives. Spread the word - for my friend Lynn.

A Night in The Town

2009-09-15T08:09:00.002-04:00

So, last night was the annual "Taste of Newton" where they close the main street in the quaint little town of Newton and all of the local restaurants (25 or so) have food booths set up for tasting. They charge a fairly steep admission, but it is usually a nice evening. I haven't been for about 3 years, so Willie and I thought it would be a nice "date night".

It was a beautiful night - warm and not a drop of rain to be seen. When we arrived, the street was pretty tame, not too many people, so we just strolled, glass of wine in hand. There was a full range of food from mediocre to really good. Our favorite was a big hunk of dark chocolate with nuts from the local chocolaterie. Also some great cheeses from two local cheese makers. Yum. Willie loved the pulled pork barbeque.

Things started to take a turn a bit later, though. At mid street, a band started to play ... loudly. At the same time, the sun had set, so it was dark, other than street lights. And, it had gotten really, really crowded. All the perfect storm for the balance, sight and hearing impaired. It was actually kind of funny. I had been commenting that all my hiking lately has helped my overall stability. Ha. The combination of loud noise, darkness, and a sea of people completely messed up my poor brain and within minutes I was staggering around as if I'd drunk the whole case of wine, rather than just one glass. And, of course, every person I saw wanted to talk into my deaf ear. Oh lord. What a comical sight it must have been. We finally decided that I was probably going to hurt someone if we didn't leave (by crashing into some hapless fool with a full plate of food, no doubt).

It was really amazing how quickly my balance disintegrated under those conditions. My sense is that the swirls of moving people messed me up more than anything. I had gelled up my eye before we left so that I would not have to use drops, and my vision was very blurry. That, combined with the movement must have been more than my brain could sort out. The loud music was really the icing on the cake. Note to self: avoid this in the future.

All said, it was fun to get out and do something daring, though!

The Absence of Sound

2009-09-07T10:31:00.002-04:00

It has been nearly 1 1/2 years since I woke up in the hospital, deaf in one ear, and you'd think I would be completely used to it by now. Not so. And, while there are some aspects to being Single Side Deaf (SSD), there are other aspects that are strangely comforting. If you are reading this and are in the elite SSD "family", you may relate to some of my comments.

I've written before about some of the less "fun" parts of SSD. Probably the most enduring, for me, is the general sense of unease when I am in public places. It is that little element of tension that exists at all times when one of your senses is absent. It's this little twinge of always being aware that a predator could sneak up on you and you might not hear it coming. It manifests in weird ways - for example, the right side of my body is always a little stiff which comes from holding that side of my body in "high alert mode" at all times. I am much more jumpy now than I've ever been, which makes sense when you realize the fact that we are all fueled by a "fight or flight" instinct. Kind of interesting when you think about it.

But let's think for a minute about the strangely comforting aspects of being SSD. Lately I have been thinking about how comforting total silence can be. And, if you don't have some sort of fairly serious hearing impairment, you won't really probably fully appreciate this. Deafness is unlike any other type of silence. It is a complete absence of sound. I sleep with a temper-pedic type of pillow - very thick cushy foam. It does a great job of blocking out ambient and all other sound. The result is that when I sleep on my left side (which is my hearing side), I am pretty much completely deaf.

When I nestle my head down into that pillow, there is an absence of sound. I can actually feel my heart beating and in a weird sort of way, I think I can hear myself breathing - but it is not an external sound. It is all coming from within me. And, while I suppose it could be scary, I find it strangely comforting. Sirens and alarms could be blaring and I would hear --- nothing. I guess if I lived alone, this might be scary and even dangerous, but since I am usually tucked in with Willie, I just feel safe and peaceful.

Very curious to know if other hearing-challenged/SSD people experience this?

Just one more interesting experience in the post brain tumor journey...

Ceepy Crawly Things

2009-08-24T16:39:00.003-04:00

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

2009-08-21T11:37:00.002-04:00

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

2009-08-11T10:44:00.002-04:00

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

2009-08-02T12:23:00.002-04:00

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

2009-07-25T09:46:00.002-04:00

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...

2009-07-20T17:15:00.002-04:00

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

2009-07-15T19:20:00.003-04:00

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

2009-07-09T13:31:00.003-04:00

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

2009-06-23T19:45:00.002-04:00

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

2009-06-19T12:57:00.003-04:00

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

2009-06-16T17:30:00.001-04:00

I'd like to share my Snapfish photos with you. Once you have checked out my photos you can order prints and upload your own photos to share.
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Girl's Just Wanna Have Fun

2009-06-15T16:36:00.002-04:00

It was a fine weekend in the Country. Peg is in the States for a few weeks, making her spring escape from China; and Kura was in need of a break from the hustle and bustle of NYC, so it was a perfect weekend for wine, food and friends. We also had a little retail therapy, which is always fun. I don't really enjoy shopping much (I know, where was I when God handed out the female shopping gene??), but this was enjoyable. Besides, it was rainy on Saturday so sitting on the patio swilling down wine wasn't a good option. Sunday, on the other hand was beautiful as you can see from the picture above. So, since it was morning, we sat on the deck and swilled down tea...

Upon returning from the retail expedition on Saturday, we immediately opened a bottle of Prosecco - just what one needs to recover from shopping.

The only real downside (for me) is that it was more noise than I am used to, which made my hearing issues more of an issue. I hate that I can't listen to multiple conversations the way I used to be able to - it frustrates me. My ear can really only hear one thing at a time. And, my sensitivity to noise is still an issue. Cetain tones are just painful. Grr.

Anyway, I had a bit of a pity-party after everyone left Sunday. A little of the "woe is me, things aren't the same" stuff. It's really kind of silly - I am so lucky in so many ways and I shouldn't feel sorry for myself about something as relatively minor as not hearing some things and hearing too much of others. In the scope of things, this is pretty minor stuff. However, it doesn't make it any less frustrating.

Canals

2009-06-11T09:19:00.002-04:00

Let me start by saying that there are good canals - like the ones in Venice and Amsterdam. These are WAY good canals. I love 'em.

Then there are bad canals - like root canals. I could probably just stop right here, couldn't I? But where's the fun in that? Last weekend I started to have that nagging pain in my lower jaw whenever I drank or ate something cold. By Monday, anything hot or cold sent shooting pains up and down my head. Now, let me explain that these pains were occurring when I chewed anything on the left side of my mouth - which is, coincidentally, really the only side I can chew on. Why? Because I still don't have good enough muscle control on the acoustic neuroma side to keep food in my mouth while chewing!

Clearly, not eating wasn't an option, so I phoned the dentist and he said I should come in Tuesday morning. After x-rays and a few minutes of acute anxiety - he uttered the dreaded words ... "you need a root canal." Crap. I'd rather have brain surgery. Oh, wait, I did that already... I immediately asked for the "pig nose" which is how I refer to that thing they stick over you nose when they give you the "happy gas".

So, many gulps of nitrous oxide and about 5 shots of Novocain later (did I mention how much those damned shots hurt?? They should knock you out just to get the shot) out came the drill. Having your mouth drilled when you are deaf in one ear and have hypersensitivity in the other one isn't really much fun. Oh, who am I kidding - drilling isn't fun even with two hearing ears!

As you have probably already surmised, I survived the event (barely.) When they got all of the equipment out of my mouth, the dentist asked me if I was okay and I quickly replied "hrmpholsphlshmp." What???? So I tried again. Same result. I felt like I had a big water balloon lodged in my mouth - oh, wait, it's my tongue. I should mention that the right side of my tongue is still pretty much numb from the surgery and nerve damage from last years brain tumor event. I am so used to it, that I really never thing about it. Well, the Novocain completely deadened the left side of my tongue too, so when I tried to talk, I sounded like a deranged mutant from Pluto. With a giant tongue. Nice.

To cap it off, when I got home, I thought a nice cup of tea would hit the spot. I brewed the elixir, put just the right amount of honey in it, let it cool slightly, took a nice sip ... and then watched it pour out of my mouth all over my shirt. I am so glad I work from home. Sigh...

And just Like That...

2009-06-05T08:32:00.003-04:00

The Jihad is over. Cats ... who can figure 'em out? Yesterday morning when I woke up, Rocket was settled ON (rather than under) the sitting room chair, laying on a pile of decorative pillows like some sort of hairy pasha. And, although both cats were a little nervous and "skitzy" yesterday (a few minor growling/hissing moments and a few instances of "puffage" on the part of Phoebe) but definitely the full-blown Jihad is over. For now.

I grew up with dogs, who are quite predictable and live to please. I got my first cat when I was 17 (and yes, as soon as I left home, my parents inherited him.) I went on to have three other cats before that fateful day 7 years ago when I brought Rocket home. He was a "free" kitten, one of three. Not quite sure why I ended up with him in my car that day. Fate, I suppose. He's turned out to be the most difficult, temperamental cat I've ever been around - and I love him to bits. He was so tiny that he fit in the palm of my hand when I brought him home. The adult cat I had at the time (now sadly in cat-heaven) hated him on site, and that never changed.

Rocket attacked the vet when he weighed about 2.5 pounds, leaving a gash on her. That's when I started to realize that he had anger management issues - hell, he had a lot of "issues." He's gotten a bit mellower with age, but he is still ruled by his inner demons, poor little guy. So, occasionally he gets obsessed with spots on the carpet, or thinks that something is out to get him. It always blows over, so we just wait it out. And, I always think that Destiny brought him to us, because who else would put up with him?

The worst fit was when we brought Phoebe home - she was a very small six-month old cat, docile and sweet and terrified (she'd been abandoned on a roadside at 2 months, then lived in a shelter for the next 4). She immediately took up residence in the bathroom closet. Rocket was shocked, horrified and ready to pack his bags. We had a little over a week of hissing, growling, hiding and generally apalling behavior. Eventually, they became good friends and good companions. Notwithstanding the occasional Jihad.

You might wonder what our collie, Carrie, thinks of all this? She is the quintessential peace-nik. If she could talk, I know she'd say "can't we all just get along." She lives in fear of Rocket (who has been known to chase her, and not in a playful way) but rather likes Phoebe. Okay, let me be honest, we think she may have an inter-species crush on Phoebe, but we're not going to discuss that here!

As I sit in my office each day, Carrie naps (sometimes snoring rather loudly) on her bed a few feet from my desk, while the cats can usually be found napping on one of the file cabinets. There is something strangely calming about all of this.

Jihad on Tallyho

2009-06-02T16:21:00.003-04:00

Well, Willie and I had a great visit to NYC this weekend - perfect weather, great food, tasty wine, lots of photos. Not much can beat springtime in NYC!

We returned home Sunday and then Sunday night ... the Jihad started. God only knows what set it off or when it will end, but it involves lots of puffed up cats and terrible noises. Somehow, poor Rocket has gotten the Terrors and is completely freaked out by Phoebe. He is hiding under the hassock in the sitting room and just growls whenever anything gets too close. When Phoebe decides to invade his dark hiding place, he shrieks and comes flying out in search of a new "lair." It would actually be a lot funnier if the noises weren't so horrific. What is hilarious is seeing Phoebe get all puffed up - she actually gets her tail to about the size of a racoon's tail - and she makes all of the hair on her body puff out. I must see if I can get a picture because it is quite priceless. No doubt the whole thing will end as suddently as it began and we still won't have a clue as to what set it off.

Great - we've got a neurotic dog and a paranoid cat. Oh, and did I mention the whole brain tumor thing...?

Meanwhile, I've recorded a video on eye care. I blame my parents who asked a few simple questions about eye care for a friend of theirs who has bells palsey. Anyway, if you want a giggle, take a look:

Here's Lookin' at You

2009-05-27T11:12:00.002-04:00

So, yesterday I had an interesting experience. To back up a bit, I was able to quit wearing my BlinkEze eye weight late last year because my eye was blinking on its own. Good news! What I guess I didn't realize is that it doesn't always blink - sometimes it just stares back at you while the other eye blinks. Creepy.

And, how did I discover this? Well, as I was driving back from a meeting yesterday, my eye was feeling scratchy and I was debating whether I should pull over to put drops in (having promised Willie that I would no longer put drops in my eye at 65 MPH on the highway - even though I am very good at it!). So, I glanced in the car mirror and I must have blinked because I watched my "good" eye close while my AN eye just stared back at me. Freaked me out. Kind of amazing I didn't drive off the highway. I asked Willie about it last night and he casually informed me that, in fact, my AN eye doesn't always blink.

Great. So I've been blithely going around with an intermittently blinking eye. Now, of course, I am hyper-aware of it, and am consciously making my AN eye blink. Except when I forget...

Fawn in the Flowers

2009-05-23T12:09:00.002-04:00

I made the mistake of sleeping in this morning (something that is a much more frequent occurrence since the Great AN Experience of 2008). And, in doing so, I missed a special moment - fortunately for me (and you), Willie experienced the whole thing.

Willie headed outside very early this morning to start working on the mulch project. As he walked out the side door from out garage, he caught a movement out of the corner of his eye in the raised planting bed to the left of the door. When he looked over, there was a very tiny fawn raising itself up on its spindly legs and trying to escape. It ran into the middle of the yard and stood there looking confused and scared. Willie said he squatted down so as not to scare it anymore. Just as he was wondering if the little baby was orphaned, he started hearing a little chirping noise - and then the mother came out of the woods, tail in full alert mode (we have white tailed deer here) looking for the baby. Reunited, they ran off into the woods behind our house.

An amazing nature moment. I can only guess that the baby has decided to sleep in amongst the lettuce and day lilies, up against the house for warmth. The bed is raised about a food off the ground, so it's kind of amazing that the little guy got up there. Willie said is was laying down, tucked up against the house when he came out. What is even more amazing is that it didn't touch the three tender lettuce plants that is was laying amongst! The little thing is probably only a few weeks old, at most. Hopefully it will make an appearance again and I will be lucky enough to see it!

And, now, I am off to plant some more tomatoes (OMG, I can't stop myself!!) Lorenzo, I blame you! And, Mom and Dad, I blame you too.

Brainy - or Not?

2009-05-19T12:14:00.004-04:00

Okay, so today I am going to have a bit of a rant. Why, you ask? Well, for starters, because it's my blog and I can rant if I want to, and for second, I need to get this off my chest!

A couple of weeks ago while Willie was planting some trees on our property line, the neighbor lady came out and was chatting with Willie. Preface: she and her husband moved in next door to us about 3 years ago, she came from Brooklyn, I think.) I mention this because she should be forgiven for not knowing a think about wild animals. I should also mention that she had (notice past tense?) three cats when they moved in (outdoor cats, from all evidence) - she now only has two. Stay with me here.

Anyway, she very proudly proclaimed to Willie that she puts all of their table scraps out in the yard every night to "feed the animals." WHAT??? Well, first of all, this explains how she now only has two cats, the third, no doubt, having been eaten by a wild animal who didn't like the table scraps but thought that cat would be tasty. Second, lady, are you freaking CRAZY? They are WILD animals, not pets. The cute racoons and fox and possums will rip your hand right off if you threaten them, never mind what they'll do to your cats. And, if you keep feeding them, they will become reliant on you and forget how to hunt. When you move on, who is going to feed them then?

We live in an area that has well publicized problems with the black bear population. In fact, we are not even supposed to have bird feeders out unless they are well out of bear-reach. And, this knucklehead is leaving out a buffet every night??? Amazingly, no bears have started frequenting our property, but one wonders how long that good fortune is destined to last? Apparently, she thinks it is cute and charming (although I suspect the cats disagree). I wanted to march right over and give her a basic lesson on wild animal etiquette (a little post brain tumor rage?) but Willie talked me off the ledge.

However, I am still not sure I am done with this (sorry, honey, I know you are reading this and cringing!) For starters, I may have to start returning the miscellaneous meat bones that find our way to our property to HER yard (in the dark of night of course, no sensing begging trouble!) I have to plot something better and more effective, though ... any ideas??? (You know I am kidding, right? I'm not really a psycho...really...)