Tuesday, December 29, 2009

Cat Hell - Parte Due (Part Two)

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

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

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

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

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

Sunday, December 27, 2009

The SSD Twirl

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

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

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

Footnote - we DID find the phone eventually.

Friday, December 25, 2009

Merry Christmas

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

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

Merry Christmas!!

Thursday, December 17, 2009

The Need to Feed

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.

Tuesday, December 15, 2009

Cat Hell

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

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

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

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

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

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

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

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

Thursday, December 10, 2009

Facial Retraining - Next Phase

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

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

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

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

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

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

Saturday, December 5, 2009

I Stand Corrected...

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

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

Tuesday, December 1, 2009

Giving Back

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

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

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

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

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

Saturday, November 28, 2009

Turkey and Italians

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

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

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

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

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

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


Wednesday, November 18, 2009

Bobble Head

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

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

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

Monday, November 16, 2009

Hidden Clues

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

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

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

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

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

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

Wednesday, November 11, 2009

Balancing Act

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

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

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

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

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

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

Saturday, October 31, 2009

The Revenge of the Pirate Lobsters

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

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

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

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


Tuesday, October 27, 2009

The High Seas

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

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

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

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

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

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

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

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

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

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

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

Thursday, October 15, 2009

A Four Letter Word

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

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

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

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

Carrie's mom...

Friday, October 9, 2009

Flying Petri Dish

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

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

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

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

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

Friday, October 2, 2009

A Memory Day

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

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

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

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

Thursday, September 24, 2009

The C Word

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

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

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

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

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

Tuesday, September 15, 2009

A Night in The Town

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

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

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

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

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

Monday, September 7, 2009

The Absence of Sound

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

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

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

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

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

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

Monday, August 24, 2009

Ceepy Crawly Things

Every year it seems like we get some plague-like invasion of some sort of multi-legged creature here on Tallyho Lane. One year, it was the Japanese Beetles which rose in a terrifying cloud from the depths of our lawn just in time to eat every expensive shrub in sight. Then we had the Gypsy Moth Caterpillars - again, arriving just in time to eat all the replacement shrubs. And, then there was the year of the Giant Cicada Killer Wasps (if you think I am kidding, Google it!). They didn't eat anything but they scared the hell out of us and tried to excavate our walkway to build dens for their hideous off spring.

Well, this year we have been overcome by slugs, spiders and something that I can only imagine is a huge millipede. There were three humongous (translation - really, really big) spiders dangling from the garage door when I opened it today. I tried to kill them all with ant spray (hey, it was all I could find) - got myself worked into such a killing frenzy that I lost my balance and nearly tipped over. At which point I would have been face to face with a three inch millipede that was making its way speedily across the garage floor. Eeek! These millipede thingies are about as big around as a #2 pencil, up to 3 inches long, and appear to have some sort of hard, segmented shell. Euw.

And, can anyone explain to me how it is possible for a spider to cast a horizontal strand of web across a 10-foot span? Do the little suckers have wings now? Do they hang off a wall and just hurl themselves sideways? Are they immune to gravity?

All this constant looking over my shoulder (and under my feet, and above my head...) is playing havoc with my already iffy balance. Lorenzo, can you please send autumn across the pond so that all these things will die or hibernate or whatever it is that they do?

Meanwhile, I am hiding in the house with a can of bug spray (which, incidentally, has NO effect on the millipede thingies...) If you don't hear from me again, you'll know something got me...

Friday, August 21, 2009

Reflections on Faces

I just returned from the ANA symposium a couple of days ago and am feeling very inspired. The event was great - from an educational standpoint and, even more, from a personal standpoint. It was such an amazing experience to be gathered with so many other people who share this rare diagnosis. There were people there who were recently diagnosed and those whose treatments are long done, and those who are "watchfully waiting."

One of my personal goals for the symposium was to learn more about possible treatments for facial palsies/paralysis. I certainly came away with much to think about, from botox to bang-tox to surgery. I have not mentally sorted through all of it yet, but I have been giving a great deal of thought to the whole issue of how much of our self-perception is tied up in how we think we look. So, bear with me while I "think in writing"...

I attended a dinner the first night specifically for people with facial issues. As I looked around the room (there were probably 50 or so people there), there were very few who I would immediately identify as having facial complications. But as I talked to people, I realized that many people really struggle with the fact that they (we) look "different" than they(we) did before. I listened to one woman who was clearly depressed who felt that people stared at her when she was in public. And, yet, when I looked at her, all I saw was the tiniest bit of asymmetry - nothing that I would ever notice if I didn't know what I was looking for.

And that got me to thinking about myself and my own self-perceptions. I know I don't look quite like I did before, but I also know that no one is staring at me in horror and running in fear. In fact, I have concluded that people who don't know what to look for wouldn't know anything is wrong. Like many of the people I met at the symposium, my mouth pulls to one side a little when I talk, and I have a weird dimple on the right side of my chin when I smile, and one corner of my mouth doesn't smile quite as big as the other side, and one eye squints up just a little sometimes. But seriously, have you ever seen Cat Deeley on "So You Think You Can Dance?" That woman is drop dead gorgeous, but when you look at her face - her smile is totally crooked, one side of her nose pulls over, one eye squints a bit ... And I suspect that is just the way God made her. (The fact that she is tall and skinny doesn't hurt, but still ... she's beautiful!)

Hm, it gets you to thinking, doesn't it? And, then I got to thinking about the people who have more serious facial issues and have gone through multiple nerve grafting surgeries to get a small amount of movement - and I have to think "Damn, girl, you've got nothing to whine about." Which is not to say that I won't occasionally feel sorry for myself or miss my "old" face a bit, or that I won't consider options for improvement. But I will also recognize that most people who look at me won't see anything wrong.

A lot of the aftermath of acoustic neuroma surgery is invisible to the outside world - deafness, equilibrium issues, numbness, blurry vision, fatigue. Which doesn't make any of those things less real - it just makes it harder for other people to understand.

And as my beautiful friend Kay would say - "When life gives you lemons, squeeze it in someone's eye and haul ass!"

Tuesday, August 11, 2009

Week From Hell

Why is is that the week leading up to any vacation is sheer hell? I've been busting my butt trying to get a HUGE project done before leave this Friday. On top of that, my hormones (cover your ears) have chosen this week to mount an attack on the host body (that'd be me). And, not to be outdone, my face has decided to be more difficult than usual (complete with droopy eye) and my balance ... well, what can you ever say about that?

I'm off to see my doctor this afternoon to see about a temporary fix for the hormonal rages; meanwhile, have started going out for a very brisk walk in the woods every day. We have some wonderful wooded parkland near us, with lots of trails and meadows. Today, I threw in a little mid-walk yoga - picture this ... tree lined pasture, lake in the distance, flock of wild geese rustling about in the tree line, peace, quiet, serenity, me doing a perfect sun-salute, getting ready for a near-perfect warrior pose. When - VRROOMM. A friggin' lawn mower/tractor lurches into my pristine moment!!! Great. Impossible to execute a flawless downward dog while sticking a finger in one ear to block the zillion decibel noise. Hrmph. Little did the guy driving the thing now how close to death he actually was - imagine engaging a middle-aged, hormone crazed woman out in the wild with no witnesses. Lucky bastard.

Friday, whether the work is done or not, we are boarding Continential Airlines and heading to the Windy City! Flurries of emails have been flying back and forth amonst the ANers whilst we decide what to wear, where to meet, what to see, etc. And I am trying to see if Willie and I can squeeze in a dinner at Frontera Grill - one of the all-time world class restaurants. Rick Bayless is one of the great American chefs and his food is sheer joy.

Well, back to work...

Sunday, August 2, 2009

My Attempts to Poison Tallyho Lane

Some things have nothing to do with brain tumors and yet are funny (and potentially life threatening...)

Yesterday I decided to take my bread-making prowess to a new level by making Pumpernickel bread. As an aside, did you know that there is no such seed, nut or flour called pumpernickel? What makes it pumpernickel is unsweetened bakers chocolate (powder). Hm.

Okay, so back to the story... I use the bread machine to make the dough, then remove it and let it rise twice, first as a glob and the second time shaped into a nice loaf or baguette. Loaf in this case. Things were progressing nicely, and the loaf was at the perfect level of "rise" to pop into the oven. Donning oven mitts, I slid the loaf in to the hot oven then headed upstairs to do something. About 5 minutes later, I started to smell something really awful. And, by awful, I mean horrendous.

I ran downstairs and whipped open the oven door. Of course, I had just put gel drops in my right eye, so I really couldn't see a damned thing. But, there DID appear to be a glob of something right on the lower edge of the oven bottom. It was bluish in color. At first I thought it might be one of those soap-impregnated blue steel wool pads (except that I don't have any of those and even if I did, how the hell would it have gotten into the oven. ) By now the smell was so toxic that I snatched the bread out of the oven, half baked.

On closer examination, I saw that the bluish blob had a dark center. Aha! It was the remnants of a blue kitchen magnet that I hung the oven mitt on! Apparently, when I donned the mitt, I didn't realize that the magnet thingy was dangling from it and apparently it dropped into the oven (which of course I didn't hear, being deaf on the oven-side of my head!)

I won't go into the details of how I chipped the gunky mess off the oven. However, I will tell you that the taste of melting plastic had totally permeated the bread so I had to throw it out and start all over again. Ugh.

As we speak, I am letting the oven run through its self-cleaning cycle. It smells awful. I am sure I am killing brain cells. If you are in NJ and you are reading this, you should probably leave the state!

Saturday, July 25, 2009

Busta Rhyme

No, I haven't gone to the dark side. However, I have named one of the backyard hummingbirds Busta. Why, you ask?

Well, every year, I put out hummingbird feeders because I enjoy seeing the tiny creatures buzzing around. We have two pairs who seem to return each year (believe it or not, they migrate from here to Florida in the winter!). The season always starts out slow, but by about this time, things between the resident hummingbirds usually gets a bit tense. Turf wars break out, and drive-by's are a daily occurance.

Yesterday, one of the males decided that the entire patio was HIS. He took up residence on the back of one of our patio chairs, strategically placed at the center of the area with a clear view of patio and surrounding flower beds. He then proceeded to puff himself up (which is hilarious all by itself when you figure he weighs maybe an ounce and is less than two inches long) and started bobbing his head in a very menacing fashion. With his bright green back and vivid red neck I thought he looked like a gansta rapper - hence the name!

Every time another hummingbird dares to visit one of the feeders or ANY of the flowers, Busta launches a fierce and noisy aerial attack. It's pretty funny sitting out there, because I can hear is the buzzing of wings and the little attack-chirps - I have no idea what direction they are coming from, of course.

Ah, nature, ya gotta love it!

Monday, July 20, 2009

Countdown Begins...

So, only four weeks until the Acoustic Neuroma Symposium in Chicago and I am getting excited! For me, the symposium represents, in equal parts, social stuff and educational stuff. Since I no longer have a need to know what my "treatment options" are (LOL) I'll just skip those sessions - and that is where the socializing comes into play! There is quite a contingent from the Acoustic Neuroma Forum headed to the symposium including many who given me so much support over the last nearly 1 1/2 years - and I can't wait to meet them all.

From an educational standpoint, I am looking forward to attending some of the sessions on hearing loss and facial and balance issues. Even though my recovery has been quite good on all levels (well, not withstanding the deafness thing...), I do have a few ongoing challenges with face and balance, so it will be good to hear what the experts have to say. And, equally good to hear what some of my fellow patients have experienced!

Kay, can't wait to meet you in person - got a big hug for you! Lorenzo, are you SURE you can't make it to Chicago? This really won't be a full on party without you. I'll bring the Prosecco...

Okay, now it is time for me to get back to work. More later...

Wednesday, July 15, 2009


Not a very creative title, is it? Too bad. I'm tired and just couldn't come up with anything more creative at the moment. I reserve the right to change it later ... or never ... or whatever!

It's been a brain-tumor themed week. Saturday I joined the NY/NJ group in NYC for our now twice-annual brunch at Brendan's. The group was a bit smaller than last time - only about 8 of us - but you would never have known that from the noise we created. Pretty funny when a group of mostly SSD people get together and all start talking at once! Last time we met, Neal was only a few weeks from his surgery, so it was great to see him now at several months post surgery. He looks great - great big smile! In fact, as I looked around
the table, I realized how terrific the whole bunch looks. Well, heck, don't take my word for it - here's a picture! Mike and his wife are on the far left - Mike's a Wait and Watch and goes to the same docs as me. That's me in the orange shirt. Behind me is Joe, also a Golfinos/Roland patient and had surgery in Jan 07. Then Wendy and Neal (July 08 and Feb 09, respectively.) Catherine, Nancy, and Eve weren't able to make this lunch, but we hope they'll be around for the next one.

Monday I had my visit with Dr Roland for follow up on my facial nerve function. As I approach the 18 month mark (November) it's time to start talking about what's next. I've regained probably about 80% of my nerve function, but progress has been at pretty much of a standstill for the last few months. I still have hyperactive muscles in my right cheek which causes my upper lip to pull up - this has been like this for over six months, so it probably won't go away without some help. Right eye still blinks less often than left, and no sign of tears. Lower lip just isn't cooperating and is still pretty useless.

So, when I go back in December we'll start talking about medical botox (freaks me out) to relax the muscle in my cheek, which will allow my mouth to look more normal at rest. I can also consider a shot to the chin which would get rid of the spontaneous dimpling that occurs when I smile or blink (some synkinesis, probaby). He said that the results usually last about six months and frequently need to be repeated multiple times for persistent facial issues.

The lower lip is a bit more of a challenge and if it doesn't come back I can consider surgery to graft some nerve. Dr. R suggested that I use the time at the Acoustic Neuroma symposium (Chicago in August) to investigate some of the newer treatments. This will give he and I much to discuss when I see him in December.

I am feeling some conflicting emotions at this point. Dr. Roland says that I am in the small minority of patients with a tumor in this size range who have long term facial issues (something like 5%). He bases this on his own stats in doing this surgery for so many years. I kind of wish I wasn't in this elite little percentage, but I am also reconciled to it for the most part. I am so used to using drops all day, every day, that I don't give it alot of thought. Non moving eye-brow? Not a big deal and I honestly really don't care about it. Lip/mouth? Well, that's more of a concern to me. My question for myself - is it enough of a concern to swallow my fear about botox injections? Would I consider a surgery to correct the lower lip function? Hm, something to ponder. I will spend the next four or five months reading and researching and talking to people. There is certainly no rush.

Any comments or experiences that you'd care to share with me?

Thursday, July 9, 2009

Catching Up

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

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

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

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

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

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

Tuesday, June 23, 2009

The Edamame Bean That Got Me

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

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

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

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

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

Friday, June 19, 2009

Taking Stock

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

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

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

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

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

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

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

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

Monday, June 15, 2009

Girl's Just Wanna Have Fun

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

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

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

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

Thursday, June 11, 2009


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

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

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

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

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

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

Friday, June 5, 2009

And just Like That...

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

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

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

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

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

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

Tuesday, June 2, 2009

Jihad on Tallyho

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

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

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

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

Wednesday, May 27, 2009

Here's Lookin' at You

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

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

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

Saturday, May 23, 2009

Fawn in the Flowers

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

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

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

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

Tuesday, May 19, 2009

Brainy - or Not?

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

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

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

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

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

Friday, May 15, 2009

Updates from Fatty Brain Land

It's Friday afternoon and I should be working on a product launch I've got going on right now, but I just decided to take a few moments out to chat. I've got a couple of hours until my final coaching session of the week (with a client who I enjoy very much, so it doesn't feel like work at all!)

I've been thinking lately about how I have changed in the last year - the post-brain-tumour-Debbi, if you will. I'm not talking about the surface changes - the occasional staggering about, the facial oddities, the deafness - but how have I changed inside? (And, no, I'm not referring to the rather large glob of belly fat that now resides in my cranial cavity!) I do notice some internal changes in myself, though.

I am just a little less certain of myself sometimes - that is probably residual "stuff" from walking around with a really weird looking face for so many months after surgery. And, it is also related to my inability to hear in certain environments. And, to my heightened sensitivity to loud noises and certain tones. That all goes towards making me feel a bit more tentative at times.

But in a good way, I am so much more focused on what is important to me now. It is so much easier for me to politely and firmly say "no" to things that aren't consistent with my goals or values. I find myself appreciating the beauty of things around me a lot more these days (hence the renewed interest in photography.) I am more patient with people who are going through rough patches - but only if I see that they are trying to help themselves. (Less patience with those who have found a comfortable home in self pity.)

And, then, there's the whole bread-baking thing ... what the hell is THAT about??? And, can I blame it on the brain tumor???

Sunday, May 10, 2009

Happy Mother's Day

I just got off the phone with my mom - we had a great video skype chat. Not quite as good as being there in person, but great to see her while we were talking - gotta love technology. The above picture was taken this past winter in Arizona where my parents wisely spent the winter - in shorts and t-shirts!

Willie's parents are coming over in awhile so we'll toast his mom, too. It's a day for moms! Last year both moms were here and Willie did all the cooking (since I was only a few weeks out of the hospital and still on "light duty.") Actually, he'll be doing most of the cooking this year, too. Filet mignons, asparagus, red peppers on the grill. He sauted some baby portabellas already that we'll serve with the steaks. Whole wheat oatmeal bread (by yours truly) is on its second rise. I've made got a fresh blueberry crisp ready to go in the oven for dessert. Yum, I can hardly wait! Wish my mom was here today, too, but instead she and dad will be in downtown Portland, OR enjoying the sunshine as they walk along the river. It's a beautiful area, so it will be a wonderful day for mom.

I hope all the moms out there have a special day, filled with love!

Monday, May 4, 2009

Loving Spring

I had the perfect spring day on Saturday - such a far cry from a year ago when walking 1- feet down the driveway made me want to lay down and sleep for an hour!

Saturday started out drizzly, but cleared up by mid-morning and the temps leveled out at about 65 or thereabouts. It was a perfect day for planting, so off we went to the garden center. I planted 58 impatiens in front of the house next to the walkway (this never got done last year because I coudn't bend over to plant anything for fear of causing a cranial fluid leak.) After completing that project, I moved to the back and planted about 30 geraniums. I also moved my little baby mesclan greens and arugula starters outside - having read somewhere that a cloudy day is best for moving seedlings outside. Oh, and I also planted six new hostas back under the edge of our deck - my mission now is to keep the deer from eating them!

I ended the day covered in dirt and totally happy! Yesterday we had a slow, steady rain, which was perfect for all my newly planted "babies." It is so good to be gardening again - I missed it last year!

This is a fine way to continue celebrating my one year anniversary!

Thursday, April 30, 2009

A Year Ago

Well, at this exact time one year ago, I was in the middle of a craniotomy - wow, those are words you never think you'll hear yourself say! To celebrate, Willie is taking me to dinner at Andre's, a favorite local French bistro - sure will be a far cry from my ice chips in the Recovery Room at NYU a year ago! Willie and I will both be glad to raise a glass of wine and toast the one-year anniversary.
My annual MRI was Tuesday, and the news was all GOOD. Dr Golfinos saw me an hour or so after I finished with the MRI and was able to pull the film up on his computer so we could see it while in his office. And, all he could see was belly fat and brain! Yahoo!!!! I never thought I would be so happy to see belly fat - and in my head, of all places. Although I knew that it would be too soon for anything to be growing back, it was still such a relief to see it with my own eyes. For fun, I am posting the "before" and "after" pictures here. And, now I will also begin what will probably be a lifetime of annual brain scans. I am told that the next one will be easier, and I am sure you are all right on that. And, as long as the docs are willing to continue prescribing a valium before I slide in to the "Tunnel of 1,000 Monsters", all will be okay.
Here's the After picture - notice the shaded area on the left side of the picture - that's belly fat, folks! Here is what things looked like before I went into surgery last year - note the big white "thing" on the left side of the screen? That's a tumor, folks.

So, that is my big news today. I am going to try to get a bunch of work done so that I can goof off for a few hours this afternoon. I have much to be thankful for and I'd like to take some time to just enjoy feeling good. If the weather holds, I'll sit on the patio and listen to the birds singing and just appreciate the sights and smells and sounds of spring. Want to join me?

Saturday, April 25, 2009


I was up at 5 this morning - which I would like to say is me turning over a new leaf, but in reality is nothing other than a rising level of stress as the date of my MRI approaches. You can use all the logic you want to explain away the stress, but the simple fact is that, in my mind, my body has proven capable of growing a foreign object once and I probably won't ever fully trust it again. This only makes sense to people who have gone through tumors, benign or not.

The MRI is scheduled for 11 on Tuesday, and I'll go to see Dr. Golfinos right after that, so at least I won't have to wait weeks for the results. And, then, life can go on!

Meanwhile, since I am up so early I thought I'd take advantage of the morning light (and no traffic) and head out to see if I can get some interesting farm pictures. It's going to be unseasonably hot today so now is my window of opportunity. Willie is off to Rhode Island with his mom and aunt Rosie to visit one the Zucculo relatives who is in a nursing home up there.

Now, I know you are wondering about the title to this blog - spitting. As most of you know, I still have parts of the right side of my face that don't move, most notably my forehead (hey, no wrinkles!) and my lower lip/chin. And, for the most part, it's not that big a deal. Oh sure, sometimes food slips out of my mouth and hangs on my lip where I can't feel it - but that's good for comic relief.

What really torks me off though, is that I can't spit. No, I am not talking about the kind of spitting that baseball players do (euw!) but the kind of spitting one does after brushing one's teeth and than rinsing one's mouth with water. I brush, rinse and dribble. Charming. I can't get my lower lip to close tightly enough to keep liquids in my mouth during the rinsing process either, so that whole part of dental hygiene is just a horror scene. I can't whistle either - all I can do is blow air (and, if I'm really having a good day, little bubbles of saliva!) Okay, probably more than you wanted to know, but hey, it's my blog!

So, please do some spitting for me, okay? And how about whistling a little tune, too. I'll be here in NJ dribbling and blowing.

Thursday, April 16, 2009

Spring is in the Air

Well, today it finally felt like spring here. I worked this morning - got a big project that I had been avoiding done - and then decided that a trip to Home Depot was in order. No, I have not suddenly taken up home repairs - I was on the hunt for a gardening "fix." You see, I decided that I am going to try my hand at container veggies this year - which simply means that I am going to plant some veggies in containers to keep on the deck - away from the sharp teeth of deer, rabbits and whatever else is roaming the property.

Even though we are still having some freezing temps at night, I just can't hold back any longer! So, Carrie and I (yes, she needed an outing too) came back with basil, cherry tomato and oregano seedlings! Not able to contain myself, I got out my trowel, some nice organic fertilizer (yep, smells like poop) and started prepping the containers. This involved breaking up root clumps left over from last year and mixing the smelly fertilizer in - dirty work, but so rewarding. Carrie was helping me every step of the way - getting her long collie-nose into everything.

Now, I'll have to watch the temps each night and bring my little babies in if a frost appear imminent, but it will be worth it later in the year when I harvest my crop!

I think I needed this right now. I have been feeling cranky and all stressed out for the last few weeks - although I tell myself that I am not worried about the upcoming MRI, I guess it is probably weighing on me more than I realize. Digging in the dirt today was good therapy. I see more such therapy in the upcoming two weeks ...