Wednesday, December 31, 2008

The End of 2008

Well, the holiday season is almost over, and so, too, is 2008. Can't say that I am sorry to see the end of this year, and hope that 2009 is a less-eventful year in medical terms.

We enjoyed the visit with my parents and were very sorry to see them leave on Sunday - however, they were very happy to be getting back to Arizona where there is no threat of a white new year! They are back to Geo-caching and volks walking; all while wearing shorts and t-shirts!

We, on the other hand, are bundled in our parkas bracing for yet more snow. Joy. Going to have a quiet New Year's Eve with our neighbors, Wolfgang and Janet. They live just across the street, so no driving for anyone and we can just totter across the street when we're done. We'll bring a bottle of something red, from the Willamette Valley, of course, to toast the end of 2008 and a better 2009.

To all who follow this, I wish you a happy, healthy, tumour-free New Year! (Hey, I know, it sounds weird, but most of you who read this can relate!)

Peace to all.

Monday, December 22, 2008

Mom and Dad Arrive

So, after surviving the full day of travel from Phx to Newark, delayed further by bad weather here in NJ in the morning, Mom and Dad finally arrived only about an hour behind schedule. We got their bags, loaded them into the car, blasted the heater and headed the hour-plus home to the estate.

Where we opened the door from the garage into the kitchen to discover brown powdery stuff strewn from one end of the kitchen to the other. I should mention that our beautiful Christmas tree is positioned between the kitchen and living room - and when we leave, we gate Carrie into the kitchen, but with access to the tree. Where one of the packages contained a nice tin of hot chocolate mix that Kura had left last weekend - just waiting to be opened on Christmas morning --- or while we were away, whichever occurred first.

So within minutes of arriving home, mom and dad and I were all on our hands and knees scrubbing up the chocolate powder and gunk. Welcome to New Jersey!

As if that wasn't enough, before we came down this morning (and, coincidentally, before we disarmed the burglar alarm) Mom decided to take Carrie out for her morning constitutional - thereby setting off the alarm (which I didn't hear because I was in the bathroom which is a long way from the alarm)... Both parents ended up outside, locked out of the house, with the dog, and with the alarm blaring at full volume. Did I mention that it was only about 12 degrees out? Did I say - Welcome to New Jersey!!

We hope that the rest of mom and dad's stay with us is uneventful. Does anyone want a collie, slightly used???

Friday, December 19, 2008

Oh, sNOw!!

New experience! Walking in the snow - oh s(NO)w!!

After chatting with my parents and telling them about the cold weather and snow that is awaiting them when they arrive this Sunday from Phoenix, I decided to take the trusty collie for a quick walk in the yard. So far, so good.

Well, as soon as I stepped out on the back porch and realized that we had about 5 inches of fresh powdery snow (with more falling by the second) I decided I should walk down the hill to the shed to liberate our snow shovel. Ha.

Remember when you were a kid and you'd run really fast down a hill and thrill to the sensation that you might not be able to stop? Well, not quite as thrilling as an adult. I carefully walked (okay, tottered) down the hill feeling with each step as if I was toppling right over. I got about halfways down the hill and then wondered how getting back up would go - too late, I was committed. Well, suffice it to say that I made it both up and down - but walking on uneven ground in the snow is WAY worse than walking at night! Wow - never expected that at all. I used the shovel as a walking stick on the way back.

Somehow, I think my mom intuited this since her parting words as we rang off were something to the effect of me being careful in the snow. Mom always knows best. Never doubt it.

So, that's my funny for the day. I may go back out when Willie gets home just to experience the wonky head in safety!

Tuesday, December 16, 2008

Just in Time for Christmas

My little twin is definitely being beaten into submission by the antibiotics - thank goodness! Still can't get my mouth open all the way, but am doing fine with small bites and flat foods.

The weekend was great - we decided not to chop down the tree this year. I realized that tromping though muddy, bumpy terrain in search of the tree was about as close to a guarantee of falling as I could get, so opted for a the local tree-lot instead. Good move, as my balance has been terrible for the last few weeks - much worse than usual. I could just see myself laying in the mud on my back - rather like a beetle with arms and legs flailing in the air. And, of course, my friend Peggy would have been right there with her camera. No on needs that!

So, the tree was bagged and home we came to sip on mulled wine while hanging the lights and ornaments. As you can see, the tree came out beautiful! Phoebe has taken up residence beneath it, our little calico gift. Of course, she also likes to shred paper, so any gifts under the tree are fair-game to her. Willie rotisseried two chickens wich were the perfect accompaniment for the Chilean cabernet, which was splendid!

For those wanting to know, TMJD is Temporo-Mandibular Joint Disorder. And, yes, the consensus is that I have it. It would cause the pain in my jaw joint as well as the neck and right-side head pain (running up through my temple). It's really not that easy to treat, but the dental nite guard (which I am now scheduled to get Thursday morning) may help. Also, my ENT suggested that chiropractic may help. So, once I get the clearance from Dr. Roland, who I see on Monday, I'll make an appointment with a bone cruncher (aka chiropractor). Meanwhile, Advil helps the constant ache as do warm compresses. I've been in a low level of pain since surgery, so I am kind of used to it. Which doesn't mean I would not like to see it gone for good! Well, at least I have a plan, which always makes me feel better.

I had an interesting conversation with a couple of my girl friends this weekend about the whole issue of my face and not feeling sometimes like anyone wanted to acknowledge it. It was a good conversation and I also think it helped them to understand better how I feel and what I need. Very cathartic. I must say that I still go through big emotional ups and downs. Some days I feel very optimistic and other days I feel lower than low. This too shall pass, though, I am sure.

Well, off to make some money...

Friday, December 12, 2008

Ah, Relief in Sight

Ah, the twin is on the run. It is now down to a mere pea-size and the swelling in my jaw is gone. I can also open my jaw slightly more than a half inch now, which still doesn't get me a chair at the diner, but it's something...

Saw the wonderful Dr. Galleos this morning and he confirmed that it is an abscess of one of my lymph nodes, need to stay on antibiotics another week, warm compresses, etc. He thinks the jaw issue is part of the abscess and should go away in the next week. He also leans towards me having TMJ and suggests seeing a chiropractor after I get my nite guard (assuming I can ever open my jaw enough to get the damned thing in there!)

This is the first time I've seen Dr. Galleos since that fateful day in early March when he told me I had an acoustic neuroma, so he was quite interested to hear how I was doing. He immediately noticed my facial issues, but went on to comment that I was in much better shape at this point than he would have expected. He was very encouraging. I'll see him in a few months for my annual hearing test.

So after the doctor, I ran to the grocery store to get some food and had a first. The girl who was checking me out said - "I hope you don't mind me asking, but did you have a stroke or something? Your face looks different." She's been at this grocery store for years and has obviously seen me before. I can't begin to describe the feeling I got when she asked me this - I could have jumped over the counter and hugged her! You see, I know I don't look quite right and I so often wish people would just ask rather than wonder - only no one ever asks because they don't want to be rude. And, of course, all my friends tell me I look great, which is nice to hear but is more a reflection of love than reality. And, I look at myself in the mirror so often that I don't know what I see anymore. Anyway, she was so kind and she now owns a special place in my heart. Which probably doesn't make a lot of sense to most people...

I'm on Advil today which seems to working so far. That means, let there be WINE tomorrow!! Lorenzo, we're opening a bottle of Chilean Cabernet that we bought 5 years ago and have been cellaring. We bought six bottles and have been anxious to try one now that it's been adequately aged. I'll let you all know how it is! Oh, and BTW, Lorenzo - I'll have you know that my mom reads my blog so that she can read your comments!

Wednesday, December 10, 2008

Acrylic Head

Lorenzo, I think you may be on to something! I could have a body-double for my head!! Excelent idea. And, I think I may only need one or two more scans to be ready. WooHoo!

Back to Dr. C today and he was happy to note that the size of my twin (the one growing under my jaw) is slightly smaller than it was on Monday. It is now about the size of a small grape, rather than a large one. And, I am quite happy to note that it is much less painful. In fact, I went for a good part of the day with a very tolerable level of pain - without meds! I did have to abandon ship and resort to meds by mid afternoon, but compared to the last 4 or 5 days, that's a quantum leap in the right direction.

I am going to see my ENT on Friday (the one who initially diagnosed my acoustic neuroma, bless that man) as Dr. C wants him to look at the scans and see if he can tell what is causing my jaw to open only a fraction of an inch. He also faxed the radioly report to both brain docs. Jeez, I feel like a science project.

Meanwhile it warmed up to nearly 60 F today, but poured rain most of the day. Mixed blessings.

Well, off to puree some soup and make a fruit smoothie. Yum. Did I mention that I am tired of food that can be consumed through a straw???

Tuesday, December 9, 2008

Abscess, Neuralgia, what else?

Monday morning (was it really only yesterday) I called my PC and made an appointment to see him in the morning because the lump under my jaw wasn't any better and the pain had only gotten worse over the weekend. He suspected some sort of abscess (not glands or ducts or anything so mundane) so sent me off to the hospital for some scans (because I apparently haven't had just the right one yet!) and within an hour called me say that I do, indeed, have some sort of abscess in my jaw. Oh joy.

He upped the pain meds, gave me two shots (one for pain, one steroid) and started me on a new run of antibiotics. And, I see him again tomorrow morning. When I saw him yesterday, he said that he doesn't think the other pain is TMJ, so will discuss that further with him tomorrow.

At this point, I'm thinking of just having my head amputated - seems easier. Perhaps a head transplant??

Stay tuned for more breaking news...

Sunday, December 7, 2008

Sunday in Acoustic Neuroma, TMJ, Salvitory Land

Wow, that's a mouth full! Assuming one can get one's mouth open, that is.

The weekend has consisted primarily of me being doped up and napping, with either an ice pack or heat pack pressed to my face and neck. What a vision! Rocket discovered that moist heat is quite lovely for cats, too, and so we shared a nap on the heating pad today!

Tomorrow I will call the doctor re the big lump under my jaw. The lump is slightly more well-defined now, about the size of a hazelnut and hard and quite painful. I hope that this gives the doctor some clue as to how to proceed. I am scheduled for the dentist 5 pm on Tuesday, but since I can only get my jaw open about a half inch now, there's no way he's going to be able to fit the nite guard. Well, let's see what tomorrow brings ... Patience, Debbi, patience!!

Friday, December 5, 2008


Okay, I think TMJD is actually worse than a brain tumor. Or, maybe not. Anyway, I don't wish this on anyone. I am still on full doses of major pain and inflamation meds and can't go 4 hours without them because the pain literally brings me to my knees. I'm NOT having fun!!

Because the joy of face/neck/jaw pain wasn't enough, yesterday morning I noticed that there was a pretty significant amount of swelling under my right jaw, and it was hurting to swallow. Off to my primary doc's office today where they told me they think I have either an infected lymph node or salavorty gland infection. So, now I am on antibiotics once a day for the next 5 days and strict orders to call the doctor first thing Monday morning if I don't see a noticeable improvement.

Oh, and I can only open my mouth about an 3/4 of an inch now - tried to eat a banana a little while ago and had to cut it into thin slits to fit in my mouth. I'm grumpy.

I think I am getting my whole life's worth of medical issues out of the way in one year - which in some respects is a relief. And, just think, only 26 days until the end of the year...

I've decorated the house for the holidays (except the tree which we'll cut next weekend) and it is looking quite festive if I do say so myself. Of course, it's kind of hard to tell in my drug-induced haze...

Since I can't talk much, I've started writing some articles and submitted one today to ezine articles - it's on procrastination, which I know a lot about...

Hope everyone reading this has a great weekend. I'll be napping...

Tuesday, December 2, 2008

Oh the Pain...

Okay, well first, let's talk about the weekend. Thanksgiving was a success with the requisite amount of noise and food. Aunt Rose came through with the pastries from the Italian bakery in Queens which made everyone smile even more. What's not to love about a fresh canolli!?

Willie and I left Friday morning and had a splendid weekend at the Westbrook B & B in Westbrook, CT. Perfect weather Friday and Saturday so we did some wandering along the shore and at Old Mystic Seaport. Also managed to eat a lot of oysters and clams and some great fresh seafood. Bliss! Drive home on Sunday started with freezing rain, so it was fairly long and not much fun.

And, with bad weather comes more facial pain for moi. Sunday night was pretty bad and then Monday it reached an unbearable level. The worst pain I've ever experienced - radiating in both upper and lower jaw, cheek, temple and down my neck - all on the right side only. At one point I was curled up in a ball trying to breath my way through the pain.

I called my dentist to see if I could get in to see him, wanting to rule out anything like a bad tooth (even though I just had them all checked two months ago.) Contacted Dr. Roland this morning who asked that I have the dentist check for TMJ. Saw Dr. Ward, the dentist this morning and he says my symptoms fit either TMJ or Trigeminal Neuralgia (fancy word for nerve pain - duh!) We're going to hope for TMJ and start with the least invasive treatments (it's not curable, neither is TN).

So, I have been fitted for a new bite guard which should be here in a week. To help with the pain, I am on a prescription anti-inflammatory with a narcotic pain killer. I am supposed to limit talking and chewing anything tough or chewy - in other words, rest the jaw as much as possible. It this is TMJ, I should see some relief within a week or so of the new bite plate. Next steps are physical therapy and possibly surgery. One step at a time. Of course, this was all triggered by the surgery, so the Acoustic Neuroma is truly the gift that keeps giving.

At least I have a diagnosis in sight, so I can now become an expert on TMJ (with a minor in Trigemenal Neuralgia, just in case!) I see Dr. Roland again on the 22nd, which is good timing in terms of knowing whether this is TMJ.

Good grief, does this ever get any easier???!!! Well, looking on the bright side, it's the holiday season which is my most favorite time of year!

Tuesday, November 25, 2008

Happy Thanksgiving

Two days until gluttony prevails ... only in America is it acceptable to have a holiday that is all about eating way more than we should! Well, in truth, if one gets back to the roots of the holiday, one can find many things to be thankful for ...

Meanwhile, back at the "ranch" ...

Phoebe isn't liking her antibiotics very much, but at least she is pretty easy to handle. I just pry open her little kitty lips and send a blast of liquid antibiotic zooming down her throat. Where upon she promptly vacates the area to fix her fur! Her tail is almost back to normal - did I mention that she did a half-gainer off the grandfather clock and bent her tail again?!

I saw my primary doc on Monday and he took a blood test so I will know by early next week whether I have the "fever" or not. He doesn't think I have it, and neither do I - but best to be safe and certain.

We are having a smallish gathering for Thanksgiving this year - only Willie's parents, sister, aunt Rosie and two cousins. I have surrendered to my new reality and have ordered pre-made food. Yes, I know my limits! Since Willie and I are leaving Friday morning for a getaway to the Connecticut shore, I don't want to be totally exhausted, so have decided to take the easy way out. Willie will cook the turkey (on the grill, of course) and everything else is coming pre-made, even the gravy! Aunt Rosie is bringing Italian pastries from Queens, so I know the meal will end very well indeed. There's not much in life that can't be improved by a good cannoli!

To all who may be reading this, I wish you a wonderful Thanksgiving, no matter what country you hail from!

Saturday, November 22, 2008

Cat Scratch Fever

So begins a new adventure. To back up a bit ... Took Phoebe to the vet Monday for regular check up. Vet said her gums were inflamed and took a a couple of blood tests (expensive ones, of course). Brought Phoebe home, Rocket took one sniff and launched a Jihad.

Fast forward to Friday ... Jihad still underway although losing momentum. Vet calls to say Phoebe has Bordatella, or Cat Scratch Disease (Fever). What, do you ask, is that? Well, I won't launch into the medical details, but it is basically a tic and flea born disease that attacks the immune system. And, while it is most commonly found in cats, it is transmittable to people who have auto-immune disease OR have recently had surgery .... (drum roll).

So the first order of business is to get Phoebe on a one-month course of antibiotics. She will be re-tested in six months to see if the bug has been eradicated.

I have an appointment with my PC doctor on Monday morning where I will find out what, if anything I need to do. I did, of course, go online to see if I could learn anything and basically it was mostly bad. Not "you're gonna die" bad, but still ugly. I'm going to stop reading and just wait to talk to the doctor Monday. Brain tumor aside, I'm really a pretty healthy person so I really don't think there is anything to worry about. AT the worst, maybe he'll put me on prophylactic antibiotics for a time. My thinking is that the month of IV antibiotics I had following the post surgical infection would have killed anything.

Well, never a dull moment on Tallyho Lane...

Thursday, November 20, 2008

Acoustic Neuroma Aftermath...

Has a catchy ring to it, doesn't it?

So the verdict on the punctal plug is two thumbs up. It is doing what I had hoped in that I don't have to put drops in as often. I still have to use the thick Celluvisc drops, but I knew that switching to a lighter drop was a long shot, so it's okay. Of course, this means I still can't really drive much at night because the thicker drops just cause too much blurriness and headlight glare. Oh well, I never much liked driving at night anyway - so there!

Glad so many of you can see so much progress in my face - the improvement in the last 5 weeks or so has been the most dramatic. I have a lot of movement in my whole cheek area now, as well as my upper lip. Lower lip is still dead, which has the net affect of pulling that corner of my mouth down a bit. Still, it's a smile I can be quite happy with - funny how you don't fully appreciate your own smile until you are suddenly without it.

I've noticed that my face still droops more noticeably when I am tired, which is also when I have a tendency to slur my words, dribble food, etc. Willie still has to remind me sometimes that something has escaped my mouth and is stuck to my lower lip or chin - what a charming picture. When I eat in public, I just make sure to wipe my lip/chin after each bite with my napkin - it's really the only way to make sure I am not wearing part of my meal on my face. Kind of funny when you can allow yourself to see the humor.

The weather for the last few days has been crisp and cold which seems to be very, very good for me. This is the first time in months that I haven't been in pretty constant pain - yahoo! I suspect that when the weather changes I'll start to get some of the pain back, but I can't begin to say how wonderful it has felt the last few days to not have noticeable pain. It just makes a huge difference.

I'll post more later about the latest feline jihad and about my "Fitover" glasses ...

Friday, November 14, 2008

Punctal Plug

Friday afternoon in acoustic neuroma land...

I just returned from the ophthalmologist's office where he inserted a "punctal plug" in my lower right tear duct. As the name suggests, it is a very tiny "plug" that is inserted using a tiny instrument into the tear duct. I will prevent any moisture that is in my eye from draining through the tear duct. The plug appears to be about the size of a grain of sand - if it ever falls out, I'll never know...

As you know, part of the acoustic neuroma aftermath is that my eye doesn't close all the way and it doesn't produce any tears. So, I have to constantly keep drops or gel lubricant in my eye in order to protect the cornea. Sometimes, I find myself using drops every 15 minutes or so, which is a pain in the ass. Or, the eye, in my case. With this plug, I should be able to double the time between drops.

I thought it would be worthwhile to post a couple of pictures here. One is a "close up" of my eyes - as you can see, my right eye is almost, but not quite, closed. That little slit is enough that I lose quite a bit of moisture from my eye due to evaporation. Also, what moisture I do have doesn't always get disbursed about the whole because my blink doesn't work well or consistently. Hence the drops and punctal plug. You can also see from this picture that my eyebrow still doesn't move - at all. The upside is that I have no lines on that side of my forehead. Since I wear bangs now, most people won't ever see the crooked eye brows, although they will see the "Marty Feldman" eye, especially when I'm tired!

I also thought it was time for a smile update. As you can see, when I make a small smile, it looks quite symmetrical. The big smile is still somewhat asymmetrical, but definitely better than it was. I'm working myself up to a separate post about facial issues, because there are so many elements to it that aren't as overtly visible, but are still annoying and daunting.

Today, though, the eyes have it...

Tuesday, November 11, 2008

Pardon Me?

So, thanks first to my "tumour buddies" for your unfailing support and understanding. I was talking with Wendy (another tumour buddy) this morning on the phone and we had some good laughs about our weird new world.

So, today I am going to vent about SSD - or, for those who aren't in our club, Single Side Deafness.

I think that the thing to stress here is DEAF, not hard-0f-hearing. It seems to be very hard for a lot of people to understand that I don't hear a single thing from my deaf ear. So, talking louder doesn't necessarily help. What DOES help is remembering to talk into my hearing ear, which is my Left ear.

To complicate the total absence of sound coming from my right side is an intensity of sound coming from my left side. I am told that the sound hypersensitivity will go away or at least diminish in time, but right now I still find a lot of loud noises to be acutely painful. So, when people shout, it really isn't a good thing and I still can't hear you because at that point, I've slapped my hand over my left ear to protect it.

Another thing that people don't seem to really understand is that I can't hear when multiple people are talking all at the same time - really, I can't hear you. All I hear is a lot of noise all fighting to enter my over-worked left ear. And, if you add some background noise onto this (air conditioner, radio, forced-air heat) it gets even harder.

Conversely, when I am engaged in a conversation with one other person, or multiple people who don't insist on talking over each other, I can hear just fine and you don't even need to raise your voice.

When I am at home, I can hear pretty much as well as I ever did. What I can't do is tell where sound is coming from. When a phone rings, I can't tell what room it is coming from. A crash in the middle of the night? No clue as to where it originated. And, sometimes, I don't really recognize sounds - I am constantly asking Willie "What was that?"

In noisy environments, I just can't hear - period. And, that is very unnerving and exhausting. I find myself not wanting to go out to dinner as often because sometimes it just isn't enjoyable at all because it is such a struggle to hear. And, yes, that makes me feel very aggravated at times - I don't like not being able to participate in conversations at the same level I used to. However, there are some bright spots. Recently I was out in a very noisy NYC restaurant with my friend Kura who carefully leaned forward over the table every time she spoke to me - which meant that I could actually hear her. It was an amazingly thoughtful gesture and is just one of the reasons why she's such a very dear friend. Love you, Missy!

I am looking into some sort of bone conduction device (either BAHA or TransEar) but I am also fully aware that it won't solve all of these issues. However, it would go a long way to minimizing the problem of people talking into my deaf ear. The other option is to just stay home all the time and while some days that is very tempting, it isn't a good long term solution.

I am trying to take some pages from my Dad's book. He has been SSD for years and most people would never even know it. He is my hero when it comes to seeing how gracefully someone can get through challenging SSD situation. And, like so many of my tumour buddies, he also knows how crummy it feels sometimes to not be able to hear. Thanks, Dad.

On a bright note, when I sleep on my left ear (which I usually do because it hurts to sleep on my incision side) I really can't hear a thing. This means that I pretty much sleep undisturbed through the night.

Thanks for letting me vent.

Sunday, November 9, 2008

Poopy Days

I've been going through a rough patch the last few weeks and I've been trying to pinpoint exactly why it has been rough. What I've come up with is that I probably haven't done an excellent job of accepting that some of what I go through on a daily basis may very well be permanent. Yes, intellectually I knew that I was deaf in one ear, and that my balance might not get completely back to "normal" and that my face would take up to several years to get wherever it's going. But, I don't think I necessarily understood the emotional implications of some of that. So, I am going to take the next couple of blog posts to try to "talk it out."

I can't promise that this will be very entertaining, but it will hopefully help me sort through things. Read if you want, comment if you feel so inclined.

I think I'll talk first about balance. I fell twice this week. In both cases, I know what happened but it was still startling to find myself on the ground. Most of what I've read suggests that I am at the point where my brain should have adjusted about as well to the disequilibrium as it's going to. And, I don't have anywhere near the balance challenges that many do following this surgery. What seems to happen to me is that if I move too quickly, for example get up out of chair and take a step all at the same time, my brain just can't keep up with my body and I end up having to catch myself. Likewise, if I bend over too quickly, down I go.

It's a little embarrassing to stumble in public and I need to get over that. And, I am going to need to change the way I move sometimes. I have always moved at a very fast speed (just ask my ever-patient husband who has been telling me to "slow down" for years) and it is going to take me some time to adjust my speed to my capability. And, that pisses me off. Yep, I admit it - I am feeling angry.

The first time I fell this week was last weekend, when Willie was away racing. I was going down the driveway to check the mail, heard a noise and quickly swiveled around to see if I could tell what the noise was and where it might be coming from. Bad move. I did the normal Acoustic Neuroma stagger, stepped into the lawn and completely lost my balance and went down. I certainly wasn't hurt, but in that moment when I knew I was falling, I was scared. I had that quick flash of thinking, what if I hurt myself, who will find me, will I lay here the rest of the weekend, etc. A simple thing like walking shouldn't be frightening.

The next time I fell, I was rushing around the house, as usual, saw something on the ground, bent over and ended up on my hand and knees on the floor. Anyone reading this who's had balance problems will totally relate to this. Most of the time, I can find some humor in it, but this week it hasn't felt all that funny to me.

I hate staggering in public. It makes me feel like I need to explain myself, and that would entail getting into some big long diatribe about why I am staggering which I just don't want to do. And, I am at the point where I really don't know if I am going to get much better which means I have to deal with this. Grrr.

Walking in the dark is a whole other challenge. I now have a route mapped out to get to and from the bathroom at night - it involves never being more than a foot from a wall or some other very stable object that I can hang onto. Turns out that when you no longer have a vestibular nerve, your brain relies much more heavily on vision to keep the body balanced. Not surprisingly, when you can't see, you are much more likely to tip over. Gee, isn't this fun?

The bright spot is that I suspect that if I can ever stop using so much gel and stuff in my right eye my balance may improve a bit too. The reality is that I can't really see much from my right eye most of the time, which makes it harder to balance. More on that later.

Well, this is probably a good place to stop. To those who are still reading, thanks for letting me rant.

Tuesday, November 4, 2008

Musings of a Muddled Brain

I have just finished doing my series of facial exercises, and put a fresh batch of drops in my eye. Pretty exciting life I lead! Actually, I also had a couple of meetings today as well as some client calls. I'm going to throw together a nice winter soup with ham, black eyed peas, and kale which will be accompanied by something red.

It is hard to believe that it is already November and before you can blink, we'll be pulling the turkey off the grill and gathering around the table to give Thanks. And, then, before you know it, we'll be out chopping down a Christmas tree. And, that can only mean that in January, I'll turn 53. And, then, I'll be getting ready for my one-year MRI! Good grief!

Well, back to today and the soup. I am thinking a pinch of fresh rosemary (last week's early and unexpected snow didn't get it!) would be just the thing for the soup. Perhaps I'll totter out there and get some. Now that we are not longer on Daylight Savings, it is dark by 5 pm, which sucks.

Now, here's an interesting question that my parents and I were debating over the weekend. Why does Alaska (my birth-state) need to go on Daylight Savings??? They have, like 22 hours of daylight a day during the summer months - WHY do they need to save it???? Can someone explain that to me???

Well, tomorrow morning when we awake in the US, we will (barring any hanging chads or dangling bills or whatever) have a new President-elect. I find it all quite exciting - like many here, I think I'm ready for a change. I drove one of my neighbors to the vote this morning (no, there was no voting-coercion going on!)

Tomorrow will be a new day....

Tuesday, October 28, 2008

Happy Halloween

As Halloween approaches, a mere three days away, I realize that I don't actually have to wear a costume this year to greet the Trick or Treaters. Yep, I can just put on my eye patch and give 'em a big smile (okay, a big half-smile). How much you want to bet that I can scare the stuffing out of some of the kids?

Willie is leaving Friday morning for the last race of the year - a 12-hour endurance race at Virginia International Raceway. I will be staying here in NJ to scare the kids and keep the home fires burning, so to speak. In preparation for the race, Willie bought a mini-bike. What, you ask, does that have to do with racing? Good question. Apparently, the HeManRacing team are concerned about walking from the pits to the "grid" so they "need" a mini-bike to transport themselves. Hey, back in my day, we rode our damned bikes!! No motors... Well, men need their toys, I guess.

It is currently doing something truly evil outside - something that the illustrious weather folks call a "wintry mix" which is code for snow and freezing rain. At the moment, it is more of the former and less of the latter - meaning that some of the snow is actually accumulating on the ground. What a mess. I think the animals have the right idea - the cats are curled up napping and Carrie is cozy in her crate while I sit here at my desk. Who's the smart one here?

Last Saturday, Willie and I attended the Acoustic Neuroma Assn's New Jersey mini-conference in Summit, NJ. It was a half-day event with speakers from both the medical community and the patient community. Very interesting. I also got to meet some of my fellow patients (Joe, Nancy, Catherine, Patricia and Mickey) which was an extra treat. It is very helpful to connect with other folks who have gone through this to compare notes and, in some cases, commiserate. Kay and Lorenzo, you know what I mean. Willie and I are planning to attend the ANA national conference next August in Chicago, where I expect to meet a lot of other folks who I've only met on the phone or online. For such a rare brain tumor, it's a very active and connected patient group. I can't imagine going through this without the support of other patients.

Well, those are my thoughts on this snowy, messy day ...

Tuesday, October 21, 2008

Almost Six Months

... since the great Boogerectomy! I can't beleive that six months ago I was making final preperations to check into NYU Med Center for brain surgery - wow! I kind of like to take stock every month to see where I am at in the recovery process. And, if they had told me after surgery that I would still be recoverying six months later, I would have been plenty pissed! However, life is what it is and you have to make the very best of it.

So, where am I at the nearly-six-month mark?
On the plus side...

My balance continues to get better, although when I am tired I still stagger around like a drunken sailor. No falling, though, which is something to be very pleased about!

I can now make a small smile with both sides of my mouth - nothing like my big smile of old, but a smile none-the-less!

I have a lot of movement in the cheek and central part of my face - very encouraging!

I am not overcome by fatigue as often now and get through most days without even thinking about a nap. Of course, I am sleeping 9-10 hours a night ... :)

I think my eye can close now!! It takes a lot of concentration, but Willie said that he could not see any "white" looking back at him last night when I tried to close it. Many Yippees on that!!

On the non-plus side ...
I have chronic pain in my neck and the side of my head. I am trying different things to combat it, from hot compresses to massage to drugs. I know it will get better over time. It seems to be muscle pain from where they pulled the muscle aside to open up my head.

Still no tears, which means that I am constantly having to keep my eye lubricated.

Still no movement on my forehead or chin, but the docs did say that that would be the last to return. The right side of my tongue is also still numb, although I am used to that now.

So, that's the current state of affairs in the post-brain surgery world on Tallyho Lane.

Sunday, October 12, 2008

Update from Tallyho...

So, I have been remiss in posting this week.

I had an appointment Monday morning with Dr. Roland, who pronounced his approval of the improvement in my facial movement. We had a good talk about the ongoing and persistent pain I've had. The neck pain is most likely muscular, caused when they pulled aside that muscle to get at the bone and Ethel. I'll continue massage and warm compresses, plus an extended release pain med when needed. I also need to try to pay attention when I am tensing the shoulder and neck muscle on that side and try to relax them.

We also discussed the headaches and general head pain, which has gotten much worse lately. He thinks it is nerve-related, and probably an indicator that I am starting to get some sensation back in those parts of my head. I can live with that!

Meanwhile, in addition to massage, warm compresses, and pain meds, I am trying magnets (I know, might as well hire a witch doctor!). But, what the hell, they can't hurt!

Our friends, Ellen, Kura and Sean came out this weekend for our 8th Annual Apple Pickin' Weekend, which was a blast. Off we went to the orchard, where we unanimously agreed that we weren't really feeling like a wagon ride out to the orchard to pick, followed by schlepping our over-laden bags of apples back - - so we opted to do our picking right in the shop at the orchard! In addition to a great supply of freshly picked Granny Smith apples, we also scored a hot-from- the-fryer bag of apple donuts! Wahoo! Came home, opened some pinto grigio and set about baking a couple of pies. Followed by baked chicken with leeks and sliced apples with the proper accoutraments (the chicken complimented by a lovely bottle of Willamette Valley pinot noir.) A good time was had by all, as evidenced by the pictures...

Thursday, October 2, 2008

Uncle Frank

While we were in OR last week, Willie's Uncle Frank passed away after a long illness. Although expected, it is still sad. Willie attended the services, which were on Monday. I thought I'd post a couple of pictures of Uncle Frank and Aunt Mary from our wedding 8 years ago. Rest in Peace, uncle Frank.

Thursday, September 25, 2008

From the Land of Pinot Noir

Checking in from Oregon's Willamette Valley, home of world class pinot noir - and also of my mom and dad! Willie and I have been here since Saturday, enjoying the lovely cool fall weather and the rolling hills of endless vineyards. Of interest to oenophiles - the Dundee Hills in the Willamette Valley grow pinots second only to the great Burgundy region of France. Take that, Napa Valley!

I've been tottering about with my faithful human cane, Willie, and having a wonderful time. Getting weird little headaches which I will discuss with Dr. Roland when I see him on the 6th - for now, I'm just enjoying the vacation!

And because a picture is worth a thousand words, here are some to enjoy!

Thursday, September 18, 2008

I did it!

I didn't fall, spit, or slur!! It was a completely successful workshop and I maintained a good energy level for the entire 6+ hours. I even survived the sandwiches for lunch - I desconstructed mine and ate it with a fork! Ha - more than one way to eat a tuna salad. I feel very pleased with myself and have already been asked to hold a date for this group's next event. Wahoo. To celebrate, Willie brought home a veggie pizza - cook's night off. I also had Willie take an update picture of my face. It is still going way too slowly for me, but at least I see improvement. I wonder how much of my smile will come back eventually.

Lorenzo and Kay - thanks so much for your kind words of support! Kay, when does your eye weight come out? And, btw, LOVED the pics on your blog about dancing in the rain!

Wednesday, September 17, 2008

Next Hurdle

So, tomorrow, I give my first public presentation since losing control of the right side of my face ... and I am nervous! It's a small group, but a long workshop (5 + hours,) and I am concerned about both my face and my energy. Okay, in short, I'm a bundle of nerves! Yesterday, my mouth wasn't working well and I was really having to work not to slur - horrors!

I have decided that I will open the session (which is all about communications and behavioral characteristics) with some amusing antecdote about brain tumors. I have NO idea what that will be, but I have about 18 hours to figure it out...

In addition to worrying about content, crooked smile, slurred words, nap attacks and wonky head, I am also concerned about what shoes I should wear. I know, how Imelda Marcos of me. But, really, I can't wear heels for fear of falling right off of them, so it will need to be flats. sigh.

Assuming I live through tomorrow, Saturday Willie and I leave for Oregon to visit mom and dad for a week. Willammette Valley, here we come! There's some Pinot Noir with my name on it ... or someone's name. Either way, I'll drink it. Dad just got his second eye "done" yesterday (not sure if he was gifted another plant or not?) so he'll be able to keep an eye on us!

More later...

Friday, September 12, 2008

Bury My Heart at Wounded Tail

So, it is clear that I need to have a picture of Phoebe's sprained tail for all to enjoy. Jules, I didn't even correlate the droopy tail with the droopy face - a true sign of feline solidarity! Now, of only Rock-man would calm down. He is still hiding under the arm chair in our sitting room, growling if anyone gets too near. Now does everyone understand why Willie and I don't have kids? Can you imagine?????

Wednesday, September 10, 2008

MRI and Felines Declare Jihad

Okay, so the boring news first ... my first MRI is CLEAN!!! Yessiree - nothing in my head but some belly fat (well, besides my brain, of course). Ain't that grand??? Dr. Golfinos was quite pleased with the results, as were Willie and I. Well, at least I think I was pleased. Hard to tell with all the valium wafting through my veins. However, thanks to drugs, the trip in the spirit-sucking tunnel of doom wasn't bad at all. So, my next date with the MRI is April 28, 2009.

Meanwhile, on Tallyho Lane ... Phoebe (the calico) cat had to be transported to the vet Monday. During a close encounter on Sunday with an elbow, as she was inching her way ever closer to the chicken on the kitchen counter, Phoebes took a flying leap to the floor and somehow managed to sprain her tail. Instead of sticking up in the air like a proud cat, the tail hung limply from her butt, like a sad cat. Fearing that she might have something major wrong, I wizzed her off to the bet. Several x-rays and a shot later, we were on our way home again, none the worse for the wear.

Rocket sidled up to greet her when we arrived home, giving her a friendly sniff on the butt, in that special way of cats everywhere. Horrors! Vet smells!! Rocket instantly declaired Feline Jihad on Phoebe (and everyone else in the vicinity), by launching into hisses and snarls and other intimidating noises. Finally, in order to get sleep, we had to seperate the former best friends for several nights. The Jihad is still underway, but appears to be losing some steam at last. Meanwhile, our poor collie, Carrie, keeps wandering right into the middle of the hostilities. She got so upset the first night that she threw up (yeah, we all want to do that sometimes, but most of us find the restraint to stop ourselves...!)

Well, at least Phoebe's tail is starting to look more cat-like.

Ah, never a dull moment on Tallyho ...

By the way, for those following the great "gift debate", I've decided that a Smart Car would be an appropriate, and earth-friendly, post brain surgery gift. I'll email the docs to let them know where to deliver it....

Wednesday, September 3, 2008

All in the Family...

Okay, so to prove that I have inherited my Eye wear Fashionista tendencies, here's a picture of Dad right after his cataract surgery yesterday. Which one of us is funnier looking - him with the pirate patch or me with the onion goggles????
Oh, and the basket is a little "thanks for shopping" gift from the surgeon. Apparently you get a cute basket for cataract surgery, but nada for brain surgery?!

Viewers Choice...

Tuesday, September 2, 2008

Happy Anniversary!

.. to us! Yep, today is our 8th anniversary! In some respects I feel as if we have always been together, and in others, the time has just flashed by. This has certainly been a year where I have had multiple occasions to realize how lucky I am to have Willie as my partner in life and love.

We decided to spend yesterday doing some fun things to celebrate, so we started off having breakfast at the local diner (something we never make time to do!) After that, we took Carrie to the park and walked up on one of the forest trails. Note to self - don't do this alone! I was teetering and wobbling all over the place and really needed to hang on to Willie. All that uneven ground is quite challenging still!

After that, we decided to take a drive up to Westfall Winery to visit our Malbec! We went into the barrell room and took a sample from our barrell (see Willie preparing at right). Although it is still very young, it has great promise and we look forward to visiting often over the next 8 months!

On our way home from the winery, we stopped at a little restaurant and sat our on their patio, with a view of the lake, and enjoyed a leisurely late lunch.

The day was capped off with me trying a new recipe for eggplant Parmesan which was wonderful!! The eggplant and tomatoes from the local farms are at their peak right now, so it pays to find different ways to incorporate them into our meals.

Tonight, we are heading over to Bula with a bottle of our favorite Willamette Valley Pinto Noir to enjoy an anniversary dinner.

Next on the agenda - first post surgery MRI next week! Yahoo!

Sunday, August 24, 2008

It's All About The Onions...

Okay, so here's the deal. When you have facial paralysis, your eye doesn't tear which means that you must be very careful to keep the eye artificially moist with tears, gels, etc. One of the things you can do is create a "moisture chamber" which keeps the eye sealed, thereby allowing any moisture to stay in the eye as opposed to evaporating.

Stay with me here - I'm going somewhere with this ... and there are pictures! Several of my friends on the Acoustic Neuroma forum who are dealing with face and eye issues have been on a quest to find things that can act as a moisture chamber for the eye. Voila! Enter .... ( drum roll!) ... Onion Goggles!!!

Yes, folks, Onion Goggles! A handy device invented for cooks to wear while chopping onions so that their eyes won't tear. They are available in finer chef's stores as well as on Amazon and E-Bay. The theory is that if the goggles provide enough of a seal to keep onion fumes out, then they will also keep moisture in.

They come in a choice of colors, one being pink which supports breast cancer research. Need I say more?

But, enough of my chatter - judge for yourselves... (And thanks to my dear friend, Peg, for being the photographer on this...)

Oh, and Lorenzo - The evil Ethel was 2.4 sticky cm when removed...

Thursday, August 21, 2008

My Brain

So, I thought it might be fun for those viewing from home to see what an acoustic neuroma actually looks like ... Here is a copy of one of my initial MRI views - the big white blob is Ethel before surgery. I will be going for my first follow up MRI in a couple of weeks, so will post a follow up picture when I get that film - hoping to see nothing, other than maybe a couple of small spots. The surgeons left a few "nubs" behind that were stuck to my facial nerve, so I don't even know if they'll show up or not. As tumors die, they stop looking white in films and turn to black, indicating necrosis (cell death, which we like!)
That's all for today...

Monday, August 18, 2008

A Glorious Weekend

Well, the weekend with the posse was great - perfect weather, great food, good wine and - most of all - good friends! And, since a picture (or several) is worth a thousand words, I'll just let the pictures speak for themselves. My smile still sucks, but it's better than it was a few months ago...

So, the featured players ... Top is Willie and I, taken from my "bad" side; second is Peg, me and Kura; bottom is Sean. We're missing Sally, Ellen and Lynn from this gathering, but they were with us in spirit!

I am continuing to get more movement in my cheek, which is very encouraging. Lower lip and eye are still motionless, but I am hopeful that time will heal...

Thursday, August 14, 2008

Another Milestone Reached...

This was a banner week for moi.

On Sunday, I got in my car and drove about an hour and 40 minutes to Cornwall, NY to join several of my colleagues for a "retreat" to brainstorm and strategize for a business we are all involved in. So the first milestone was driving that long all by myself! Fortunately, I was able to put my eye weight on for the drive so I only had to stop once to put drops in my non-tearing eye - yahoo!

I was beset with anxiety leading up to and during the drive. Of the approximately 10 people I was going to see there, only one had seen my "new" face. I suddenly felt like a gawky, insecure teenager. I had several raging internal debates about whether I should just cancel and stay home. Almost did just that a couple of times. I spent most of Sunday afternoon feeling teary and scared. However, I powered through.

Arranged to meet my friend and colleague Denny for dinner - felt that would be a good way to "break in" slowly in preparation for the big "unveiling" on Monday morning. Well, as luck would have it, we ended up having pizza on the patio of the Inn and were joined by three other colleagues - none of whom ran shrieking at the sight of me! Huge hurdle passed!

Monday morning, I met up with all the other folks - and, again, no one ran shrieking from the room.

The two days were successful in so many ways! I got to know some people who I only really knew peripherally before, which was wonderful - we got some great strategies developed - I put in the two longest days yet since surgery - and I did very well at our group dinner Monday night (complete with background noise and lots of people talking - all of which can spell disaster for we SSD folks!)

So, at the moment, I am feeling on top of the world! My friends Kura and Peg are coming out tomorrow for the weekend - this will involve pedicures, wine, food, wine, laughter, wine, dominoes, wine (maybe some Prosecco - thanks for the suggestion, Lorenzo, more wine... Well, you get the picture!

Feeling good in the Northern Compound...

Sunday, August 10, 2008

Eye Update

Well, after sufficiently resting my eyelid, I once again affixed my Blinkeze to my lid this morning. So far, so good!

I am off to NY State for a two-day meeting, leaving this afternoon - it's about a 90-minute drive, so having the eye weight is a MUST as it keeps my eye so much more moist. I am traveling with the full complement of eye-care stuff - patches, drops, gels, eye wash, blinkeze kit, etc. I feel as if I am ready for just about anything! Now, all I have to do is get the steamer trunk in my car...

I'll be home again Tuesday night, so will post again then.

Thanks to all for your good wishes, and comments - I appreciate it so much!! Lorenzo, it's just about cocktail hour on the Continent, so hopefully you'll be hoisting an appropriate beverage. And, Kay, you should be poolside with the curly girls about now...

Ci Vediamo!

Friday, August 8, 2008

A Bump in the BlinkEze Road...

Just when you think everything is coming up roses in the post brain surgery world...

Late yesterday, my eyelid started to feel kind of sore, so I took the beloved BlinkEze off to take a loo, (and because it was time to change the adhesive.) Well, what do I find but swelling and redness on my eyelid! I tried to re-affix the weight, but it was just too uncomfortable so had to sleep with my eye patched again for the first time in 3 weeks.

This put me into a bit of a funk. I had a little pity-party for myself last night, but am already planning alternative options today. I am going leave the weight off today and tomorrow and try putting it back on on Sunday. We'll see if that works. If not, I am going to call the doctor and try to arrange for something called a "punctal plug" where they basically block the tear ducts on the lower lid as a way to retain moisture in the eye for longer periods. And, if that fails, I'll look into getting a surgically implanted "gold" eye weight.

Of course, there is always the chance that my eye will actually blink on its own one of these days, which would be the best option of all!

Meanwhile, I think that a nice piece of grilled salmon and a fresh grilled eggplant and tomato salad is in order... perhaps accompanied by a nice crisp glass of savignon blanc and followed by a piece of dark chocolate...

Tuesday, August 5, 2008

Back to Normal?

Someone asked me the other day when I would be "back to normal" ... and it gave me pause to think about that. What is normal, anyway? I realized that I probably needed to redefine "normal" for myself.

Will I get back to the way I was before this little Acoustic Neuroma adventure? No, I won't. I will always be deaf in one ear, and will probably always have some facial issues. I may (or may not) get tired a little easier than I did before, and I may occasionally have "wobbly" days when my balance isn't quite up to snuff. Is that depressing to me - definitely not! I don't look at this as not returning to normal; rather I look at it as having a new normal.

Sometimes life forces you to take a little time out - it is up to you what you do with that time out. For me, this was a good chance to re-examine my priorities and kind of "check-in" with myself to make sure I'm doing the right things. I have made some changes to my business as a result of this and am very excited about the changes. I have also become more selective about what I do in my "leisure" time - also good. And, I'm coming up with a list of upsides to facial paralysis! (Now, that is a bit of challenge, but I'm up to it!)

So those are my ruminations today from Tallyho Lane.

Lorenzo, the bottling will be sometime next year and you're invited! Jules, you too! And anyone else who wants to hang out in a vineyard for a few hours and swill down some wine.

Saturday, July 26, 2008

Tales of Medicine and Wine...

Well, first the medical tales … we had a good visit with Dr. Roland Thursday and I left feeling very encouraged. He could see the new bits of facial movement, and feels that I am between a 4 and a 3 on the House-Brackman Scale. For the uninitiated, this is the universally accepted scale that doctors use to “grade” facial movement. Six on the scale is zero movement and 1 is 100% movement. Coming out of surgery, I was probably pretty close to a 6, so I’ve definitely made progress.

So, the big question is … will I regain 100% facial animation? Probably not. But is 90% realistic? Probably so. I’ve done so much reading in the last few months about facial nerve paralysis that I’d already pretty much figured out that a full recovery isn’t probably realistic; but I would be quite happy with something in the 90% range! At that point, it wouldn’t be noticeable to most people at all.

Dr. Roland had a new Resident and a new Intern with him yesterday, so they were hanging on his every move and monitoring my every facial movement. I felt like a very expensive science project!

Now, to answer Lorenzo’s question … Yep, I am making wine! For my birthday this year, Willie gave me “tuition” for a wine-making school. We went in with our neighbors on a half-barrel of wine, and we chose Chilean Malbec. As luck would have it, this year’s Malbec harvest was one of the juiciest in recent history, which means that it should be an excellent wine!

I missed both the crushing and the pressing, but I am on board for all the rest of the steps along the way. They have a vintner who really manages the process and tells us what to do. When you think about it, we are paying the winery for the privilege of doing their work for them. Who’s the idiot in this equation…? Ha ha!!

Everyone is invited to the bottling party, which will be sometime next year!

I’ve sent Willie off again to race this weekend (yes, I know, I am an amazing wife!). Heaven knows, he has earned some R & R time this year! Zoom, zoom, zoom!

Later, Kids!

Monday, July 21, 2008

An Eventful Weekend

So, because getting the Blinkeze wasn't enough excitement for one week...

I met up with some of my new AN friends in NYC on Saturday, and made the trip all by myself! (I forced Willie to go racing with the HeMen this weekend, wonderful wife that I am...)

So, bright and early Saturday, I set out on the 40 minute drive to the train station, followed by the 99 minute train ride into Penn Station. I must say that I was having a very good day in terms of balance, which made the whole adventure much easier. Penn Station was mobbed when I arrived, but I navigated through without mishap and headed to the Heartland Brewery to meet Eve, Wendy and Joe.

We spent a completely fun 3 hours talking and laughing - and continually asking each other to repeat themselves because we are all either SSD or very nearly SSD. It was actually pretty comical. I showed off my Blinkeze and Eve showed off her TransEar so it was a good educational experience as well as being just plain fun!

Return trip home was also uneventful and I didn't even feel completely exhausted ... until the next day. Sunday was a big nap day. However, before napping, I headed out with my neighbors, Wolfgang and Janet, to go visit our wine up at the Westfall Winery. We racked the wine (basically moving it from the oak so that we could clean the barrel). We also tasted, of course, and I am happy to report that it already tastes surprisingly good after only 2 months in the barrell.

Meanwhile, Willie finished 5th in class in his race, and is now out at Poconos for the day instructing wanna-be race car drivers. Since Willie's not the calmest of passengers, I can only imagine the butt-clenching and silent screams...

Off to see Dr. Roland this Thursday. I am going to practice my three little facial movements so that I can show them off to him when we get there... Ha!

More later...

Thursday, July 17, 2008


Got "the" phone call today from Dr. L's office saying that my eye weight was here! I immediately rushed off to his office to get it. He was there, so came out to help me put it on. While he was standing at the counter opening it up, one of his staff came over to ask if it would be okay if the techniciams came out and watched ... and before I knew it, I had an audience of 7 or 8 very interested women! They were all suitably impressed!

In all, it has been an excellent day. My brother in law, Philip, is here visiting for a few days, so he and I had a nice brother/sister lunch today. It is always nice to have some private time with Philip - if I'd had a brother of my own, I'd want him to be just like my brother-in-law.

Tonight, I am resting. As I expected, fatigue set in during the late afternoon and I had to sit for awhile. However, while I was sitting, I was blinking! First time in nearly three months! Life IS good.

Tuesday, July 15, 2008

How Debbi Got Her Blink Back

Okay, well maybe not entirely...

Over the weekend, I decided that I had given up too early on the opthamologist and that I shouldn't have stopped with the first one. So, I did some online research and, at about 5 pm, sent an email to a local guy who looked like he had a lot of experience with eyes. I specifically said I was looking for someone who had experience with Blinkeze External eye weights. Lo and behold, he emailed me back at about 8:45 PM (who does he think he is - a neurosurgeon or something???)

Fast forward, we exchanged several emails, and I called first thing yesterday to make an appointment. Saw Dr. Leigner this morning and got "fitted" for an eyelid weight (1.2 mm for those who need details). They are placing the order today and I am hopeful that I'll have the weight and the accompanying adhesive strips by Friday. Wahoo!!!

And for those who would like more info, here's the webpage describing the Blinkeze, along with a photo.

Meanwhile, I have taken on the Bosu Ball again and offer this picture as proof that I am conquering the ball. Note that about 1 second after this picture was taken (and thanks to Kura for being a superlative photographer), I jumped from the ball (okay, maybe toppled is more accurate...).

Hopefully the next picture will be of my Blinkeze...

Thursday, July 10, 2008

Updated Photo

Thought I'd add a couple of new photos of the incision, so you can see if you agree with Dr. Louie!

The Dr. Louie Update

Got one thumbs up for Dr. Louie yesterday, expect the second thumbs up next week when he gets the results of the blood draw. BTW, if anyone wonders where the supply of blood is, all my doctors have it! Dr. L was very happy with my incision (now, there's something I never thought I'd be saying...) and we don't expect any surprises with the blood work either! Yahoo!

yes, Lorenzo, break out the petit syrah - and a nice wedge of cheese, please.

Don't think I mentioned this, but I am collaborating with a group of other Acoustic Neuroma patients to write a book. Each of us will contribute a chapter about our own experiences. The idea is to make the book available, probably through the Acoustic Neuroma Assn, for newly diagnosed patients and caretakers. The first days, weeks and months after diagnosis are such a whirlwind of emotions, and we felt that many might benefit from hearing our stories. I feel strongly compelled to make this event in my life really mean something, and to "give back" to others.

During the first couple of days following my diagnosis, Willie and I were spending countless hours scouring the internet for every shred of information about this thing growing in my head. Willie found the website and its Patient Forum and was the first of us to post a question. We were both amazed at the support, advice and compassion that was extended to us by people on this forum. I strongly believe that my journey has been made far easier by this group of people. So, it is my intent and desire to continue to remain active in that online community and to support others as they start down this road.

Many have said that having an Acoustic Neuroma is a life changing event - I'm not sure to what extent that will prove to be true in my case, but I am certain that at least some changes will evolve from this - and they will be positive!

Okay, that got way more serious than I had planned!

So, on a far MORE serious note --- I am finally getting this wretched mop of hair on my head taken care of tomorrow!!!! Yes, it has been three (count 'em - three!) months since I've seen the inside of a hair salon. Shana is going to scream when she sees me, but I know she will then set about making me look relatively human again. Lord, nothing like three months of drugs and stress and no hair color and no styling to make a girl feel hideous! Can't fix the face, but the hair is definitely going to look great by end of day tomorrow! Pictures to follow!

Tuesday, July 8, 2008

Dog Days of Summer

Okay, safe to say that this has been one VERY weird year! I feel like the entire spring time was just a big blur - hey, wait, it was! Nothing like a little brain surgery to mess with your sense of time! Anyway, I was thinking that tomorrow marks the 10 week mark since my surgery.

So, it seems like a good time to recap ...

March 4 - diagnosed with an Acoustic Neuroma, a fairly rare tumor that grows on the 8th cranial nerve and encroaches into the brain when it gets big enough. Mine was mid-sized and pressing against my cerebellum. Main symptom was mild hearing loss in my right ear.

April 30 - translabrynthine surgery at NYU - surgery took about 5 1/2 hours, most of the tumor was removed; but they left a small bit behind because it was stuck to the 7th cranial (facial) nerve and could not be removed without risk of permanent facial paralysis. Also had a 2 1/2 inch incision on the left side of my belly to remove a small amount of fat to fill the hole in my head. They refused to do the entire belly, despite my desperate pleading...

May 3 - released from NYU and happily home sleeping in my own bed - or at least trying to sleep because those darned steroids wreak havoc with one's ability to sleep. They do, however, help with the swelling in the head, so it is a good trade off, I guess!

May 20 - back in the hospital with an infection of unknown origins. Had my own little petrie dish where they tried to grow a culture of the gunk from my head incision. Charming.

May 23 - home again, this time with a "PICC" line installed in my right arm so that I can infuse IV antibiotics twice a day from home. Lucky me!

June 23 - PICC line out!! Momentous day! No more IV line hanging out of my arm, no more wrapping myself in Glad Press 'n' Seal to shower - oh happy day!

Those are the highlights.

My face is still mostly paralyzed, although I am definitely getting some movement back in my right cheek. I have what I believe is a Madonna (the famous work of art, not the pop star) like smile now!

Have pretty good balance most of the time, but do still tend to tip over on occasion.

Still fighting the fatigue, but having more good days than bad. Next big dates ...

July 9 - seeing Dr. Louie, the Infectious Disease doctor, for the final blood draw and hopefully clearance on the infection.

July 24 - seeing Dr. Roland again for assessment of facial nerve and progress

Sept 9 - first follow up MRI - I'll be getting these for at least the next 5 years to track for regrowth of the tumor. Chances for regrowth are small, but then again, the chances of getting this damned thing to begin with were also small ... no sense risking the tri-fecta!

Lorenzo, you're gonna have to do better than espresso, man! At least raise a chianti, if not a Barolo...

Jules, how is your recovery going?

Kay, how are the Curly Girls?

I'll post in the next few days with the final verdict from Dr. Louie. Meanwhile, keep smiling!