Ciao, 2010

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

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..."

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

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 ...

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

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

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

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

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

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!

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

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

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

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???

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...

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

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

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...

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

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"

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

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...

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!

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

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

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!!

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!

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

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

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

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

... 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

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

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

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!!

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

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

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

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

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

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)

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

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...

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????