Birds and Brain Tumors

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

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

 

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...

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

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?

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

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...

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?

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

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!

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...

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

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!

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

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

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

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...