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?

Spitting

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.

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 ...

Rainy Saturday

Well, it is a drippy, drooly day in norther NJ - too wet to really do anything outside. So, before I sit down for a read, I thought I'd write down a few random thoughts.

I've found myself spending a lot of time lately thinking about this time last year. I was only a few weeks from surgery last year at this time, and I can't help but reflect on what a difference a year can make. In truth, I can't remember much about the change of season last year - even though spring has always been my favorite time of year. It all registers as a stressful blur to me. Willie and I were both so scared a year ago, and filled with uncertainty.

I wonder how I would have felt had I known that I'd have such a long battle with the facial issues? It was my biggest fear going in, but I hadn't really considered all the consequences in the event that there was a problem. I remember waking up in the recovery room and Willie being there. He gently told me that I had some facial "weakness" and that Dr. Golfinos said it would probably take 4 or 5 months to get back to normal. I remember thinking at the time - "how am I going to get through 4 or 5 months?" Ha. Little did I know!!

It is interesting, though, that we can deal with a lot more than we give ourselves credit for. I have learned so much about myself in the last year, and about the people I am closest to in my life. And, I like what I have learned. As I approach the one-year mark, I am happy with where I am. I've regained about 80% of the facial movement; my balance is pretty good; and I am slowly learning how to be deaf in one ear (still a ways to go on that, but I have faith in myself.) I still don't have any tearing in my right eye, but I have become so adept at using eye drops that most people don't even notice what I am doing!

There's no denying that, for me, an acoustic neuroma was a life altering event - but I have to say that it has been largely positive. I've gained new friends, new wisdom and an even deeper appreciation of my husband, family and friends.

And, although I am approaching my first annual MRI with a slight degree of anxiety, most of what I feel is confidence!

Buona Sera!

Just a quick update, before Willie and I head out for a bowl of pasta at one of the local spots.

We had a great visit this weekend from Willie's Aunt Millie and her partner, Ollie. We saw them just about a year ago, as I was preparing to have my head bored open. I was in a much better frame of mind for company this year! Millie and Ollie were driving up from their winter retreat in FL, and arrived yesterday afternoon after several days of treacherous driving in very rainy conditions. Willie's mom and sister came over, we opened a good bottle of pinot noir (Wilammette Valley), ordered a couple of pizzas and had a great visit.

Willie whipped up breakfast for the whole crew this morning, including his father (Millie's brother) - whole wheat pumpkin pancakes, whole wheat toast, and made-to-order omelettes! We sat around the table and laughed and ate and laughed some more - what a wonderful morning. Before everyone left early this afternoon, I got us all in front of the fireplace and took a couple of photos, one of which I am posting here.

I always really enjoy seeing Millie and Ollie. I first met them when Willie and I were dating, and I felt a special connection immediately. Millie is smart, funny, outspoken, opinionated - my kind of person, in other words! And, Ollie is the perfect counter-point to Millie - he is the incredibily calm, serene person with a wonderful subtle sense of humor. I suppose they kind of remind me of Willie and I in a way, and of my mom and dad. Anyway, it was a lovely weekend.

More later...

A Guest Blog Post by Lorenzo

My friend Lorenzo Tonti recently posted something on Facebook and it was so compelling to me that I wanted to repost part of it here. With Lorenzo's permission, here is an excerpt from his post:

"Another aspect of one sided hearing loss is the lack of natural filtering. With normal hearing, the brain can 'filter out' unwanted or background noise. With only one ear functioning, that filter is not working. Every noise is registered at the same level; every noise. Can you hear your name being said or called across a room full of people? I can't, no matter how loud the person says my name. They have to scream to get my attention. This also probably seems a rather minor problem, doesn't seem that important. Not so. The effect of all this noise in one's brain is overload. My brain gets overwhelmed by noise. It can take only so much of it, but the effort of trying to understand and have some sort of normal social interaction is just so great that it overloads the brain. That means: sudden and extreme fatigue, a sense of panic, a reaction of wanting to flee and a need to be away from the noise! That sort of reaction has a huge effect on one's life! I have to think very hard before I commit myself to going out to a restaurant because I know that I most likely will not hear very much, and after a while my brain will just refuse to work properly and I will shut down. I will be isolated in the middle of a group of people, not being able to communicate, and I'll be fighting the urge to leave. This is by far the worst effect from my hearing loss, it's very isolating."

So, why am I reposting this? Because it is the best explanation I have ever read of what the world sounds like now and why it so overwhelming at times. I am sure that my other SSD friends who read this will relate - and hopefully it will help some of the non-SSD people understand a little better.

Thank you, Lorenzo - as the young'uns say - you rock!

Wow - I'm Deaf in One Ear!

You are probably thinking - Deb, you just now figured out that you are deaf in one ear??? Truth is, I've been SSD for nearly 11 months now. But, for some reason, I am just now getting around to realizing it and dealing with it. Probably has to do with the fact that I have been pretty busy dealing with the lazy face issues for the last 11 months...

So, this weekend, Willie and I headed into NYC for a much-deserved getaway. Lovely cool spring weather made it a perfect City weekend. We headed down to the Village Friday and bellied up to our favorite oyster bar for oysters, clams and Sancerre; then headed to a new place for Peruvian tapas (cebiche and salad - fabulous!) Walked back to our hotel (about 3 miles) after dinner, a stroll down memory lane for me.

Saturday night we met up with my dear friends Kura and Ellen at a little Italian joint in the east 20's. Planned to arrive early hoping to beat the noise. Pizza Margarita, downy-soft gnocchi and pinto grigio - all devine. What was less than devine was the noise level which escalated to the predictable full-tilt level by mid-way through dinner. Not surprisingly, I had to lean, tilt and crane to get even part of the conversation, which became exhausting and frustrating. By the end of dinner, which I capped off with Vin Santo and biscotti, my nerves were frayed and I felt ready to burst into tears. It is so incredibly frustrating not to be able to hear well - and worse to be able to hear the person sitting three tables away, but not the person sitting right across from me. It is so weird how certain tones carry and others just get lost in the noise. I still find it very exhausting to listen in these environments. And, I find that I get annoyed with my own inability to hear all that is being said.

And, oddly enough, I think I am having a little delayed grieving for my lost hearing! Sort of strange when you think about the time that has passed, but I suppose I have been so consumed with all of the facial paralysis issues that I just didn't take time to deal with the SSD thing.

In any event, not withstanding the noise/hearing issues last night, it was a good weekend with lots of good food and fresh air. The animals (Carrie, Phoebe and Rocket) were excited to see us when we arrived home, and now they are all napping with Willie while I sit here in my cozy little office.

I've got a loaf of bread on its second rise and planning a dinner of spring veggies and fresh bread. Yum.