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...

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.