Wednesday, March 25, 2009

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!

Sunday, March 22, 2009

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.

Sunday, March 15, 2009

Spring is in the Air

The first Iris of spring popped up in my garden this week - cause for excitement and a fair amount of anticipation. Last year, if you will recall, my spring was consumed with brain tumor business. The net result is that none of us here on Tallyho Lane really felt as if we had a spring at all. We did a lot of slaying-of-wild-shrubbery, but it was all done as a way to release some of the extreme anxiety we were all experiencing, thereby rendering it pretty much joyless. Now, this year is gonna be different!
To kick off the spring, we had our friends, Phil and Nancy and their dog Lucy out for a visit yesterday. They live in the West Village so I think they were looking forward to a little country air. As soon as they arrived, Lucy and our collie Carrie took off running all over the yard like a couple of crazy dogs. Of course, Carrie being an old girl crapped out really quickly while Lucy, being a young girl, continued to run around the yard like a puppy. Once we have successfully worn out our dogs we headed inside for some quiche and a little cotes d rhone and some of my finest homemade whole wheat bread.
Now I'll back up just a moment and explain that Nancy is a fellow acoustic neuroma survivor just like me! We met last year thanks to the AN forum. Nancy had her surgery with the same surgeons as me about two months after me. She had many of the same complications as me, so we have been able to give each other a lot of support as we wait for our faces to slowly heal. I continue to be so grateful for the amazing friends I've made through this process(Lorenzo, Nancy, Wendy, Angie, Kay, Lori, Brian, Hrissy, and so many more). It does make you realize that all dark clouds have truly silver linings.

I've shared a couple of pictures here -- the collie is our own Carrie, and the Portuguese water dog is Lucy. And of course you'll recognize me with my crooked smile. Nancy smile is looking really good these days -- and, so is mine.

And now I am off to enjoy a bit more of the lovely spring weather. Cheers all!

Sunday, March 8, 2009

Is That a Steak on Your Chin?

Sunday morning and I'm feeling funny - not odd-funny, but actual funny-funny. Must be the beautiful spring weather we are having, or maybe it's that extra hour of daylight we'll get at the end of the day now.

Well, whatever the case ... yesterday I was talking with my good friend Ellen and we had quite a laugh about my lack on sensation on my lower lip. Yes, not only can't I move it, but I can't really feel it either. Which leads to the obvious - I can't feel anything that happens to slip out of my mouth and rest on my lower lip. Now, you may be thinking, "no problem, how often does anything actually slip out of someone's mouth?" Answer: when you're still recovering from facial paralyis, this happens quite often. You see, the lower lip doesn't move, so chewing and taking bites of things is kind of an andventure.

Willie, patient soul that he is, is forever giving me that little nod and downwards glance to let me know that something is affixed to my lip/chin. Sometimes, he just reaches over with his napkin and whisks whatever it is off. It's almost like we're already in the nursing home.

And, it opens me up to questions like, "Excuse me, ma'am, but is that a porterhouse steak on your chin?"

Wednesday, March 4, 2009

One Year Ago...

It was one year ago today that I heard the five words that profoundly affected my life - "You have a brain tumor." To back up a bit ... I had been to see my ENT for a hearing test in mid February and he confirmed that the hearing in my right ear was worse than in my left ear. He suggested that I go for an MRI "just to rule out any sorts of growths or anything." I went for the MRI on the 3rd and was surprised, but not alarmed, to get a call from my ENT an hour later asking me if I could come in the next day.

At the time, my mother in law was in the hospital with a ruptured appendix and I was quite concerned about her, so I really never gave the MRI results a second thought. I think I was viewing it more as an annoyance than anything else. In fact, I even suggested to Willie that I should cancel it, but he was having none of it (thank God!) As I sat in the waiting room, I jotted down a couple of questions for the doctor regarding hearing aids, and stiffled my horror at having to wear a contraption on my ear.

So, I was completely and totally unprepared for the news that I had a tumor in my head. I remember the doctor looking at me with great concern while I stared back at him with what was probably a blank look on my face. I remember asking him if it was cancerous, and I had him spell out the words Acoustic Neuroma so that I could look it up later. I asked about treatment and he said it would be either surgery or radiation and that I'd need to see a neurosurgeon. And then I got in my car and drove home. I debated calling Willie, not really wanting to break the news on the phone - however, I knew he'd never forgive me if I didn't tell him right away, so I dropped the bomb on him. Then I called my parents and dropped it on them as well. It is all kind of blur now. I didn't cry - I think I was just so shocked that I didn't really know how to react.

Willie and I discovered the Acoustic Neuroma Forum that night and my journey of discovery began...

It may sound a bit strange to celebrate the anniversary of the day you learned you had a brain tumor, but that is exaclty what I am doing tonight. Raise a glass with me, okay? Let's toast life.

Sunday, March 1, 2009

Sleepy Sunday

After a restless night last night, I find that my energy level today is ... well, non-existent. What I most want to do is curl up and watch a movie or read a book. And, that is exactly what I plan to do in the very near future. Meanwhile, though, I am making a loaf of wild-rice whole wheat bread. It dough was a bit gooey, so I just added some more flour. Baking is still a bit like Mr. Toad's Wild Ride (Disney) for me as I am never quite sure what will happen. However, the house always smells amazing when whatever bread I am baking is in the oven, so what the heck.

No more sightings of the raccoon. I think my threats of a baseball bat may have scared him off! Either that, or he is stalking the neighbor's cats.

Tomorrow I am scheduled to see Dr. Roland (assuming that tonight's predicted snow -event does not drop too much of the white stuff on us) to check on facial progress. Although I really thought I was starting to produce some tears a few weeks ago, I've seen nothing since, so it may have been a false start. The progress on my mouth has been a stand still for about two months; and some days I even feel that it might be just a tiny bit worse. Humph. Well, I knew that this would be a long slow process. I do seem to be slurring a bit more lately though, which concerns me a little. I emailed with the facial therapist this week and he counsels me to just keep working at the facial exercises and try to really isolate the smallest movements. (And that sound you just heard is me screaming in frustration!)

And, of course, I am not less than two months from my annual MRI. I have promised myself not to stress about it, but don't think I am doing very well in that regard. Lorenzo, I know that you certainly know what this feels like since you've been going through it for a few years. And, of course, mom and dad, you both know from your own annual cancer follow ups. Intellectually, I know that the odds of anything growing back this soon are quite slim, but my emotions get away from me at times.

Well, keep fingers crossed that we don't get too much snow tonight and that my visit w/Dr. Roland goes off as planned!