Wednesday, December 28, 2005

Day after Christmas Breakfast

Yeah I am not looking at the camera. I woke up and cooked breakfast. Thus I was not quite prepared for a Kodak moment.

We had blackberry wheat pancakes, sausage, mango lassis, and fresh mango and orange slices.

We had to have a hearty breakfast because our mission for the rest of the day was to tramp around downtown Seattle looking for the lifesize painted nutcrackers and the Garden D'lights display at the Bellevue Botanical Garden.

My dad took some fantastic photos which I am going to attempt to put in a yahoo photo album so you can just click a link in my blog and see them all.

Merry Christmas from us at the cabin!

Christmas Dinner 2005

My parents came to our house on Christmas evening for dinner as Harley worked during the day shift. We celebrated a seafood Christmas dinner of king crab and a new recipe I cooked: scallops sauted in cognac and chardonnay over linguini. The spirits we shared was a special bottle of white table wine we acquired while visiting the Baywood Cellars winery in Monterey, California after my last treatment at Stanford University Medical Center in July of 2004. (

I never quite realized it until this moment but the title of the wine we bought is called "Symphony". It was while I was in Monterey that I realized my days of hearing had passed. What an irony, eh? I knew at the time the wine was called symphony for the blend of Grenache Gris and Muscat of Alexandria they crossbred together to produce the delightful flavor of a dry wine with a touch of sweetness. However, at the time the shock of deafness clouded any connection the name of the wine made to my life.

We had a wonderful evening. Dinner was marvelous and we completed the night by cozying down and watching the new version of the classic movie "A Christmas Carol" starring Patrick Stewart (Captain Pickard from Star Trek The Next Generation). If you have not seen the film yet I would highly recommend it! I have always been a fan of Patrick Stewart and he provides a fantastic performance. In fact, this newest version of a Christmas Carol is now my favorite.

Hope you all had a nice evening and peaceful holiday!

Friday, December 23, 2005

Holy Mammoth!

Okay one more and I am way overdo to get some sleep! Cripes! Harley will be waking up in a few minutes and wonder why I am up!

Again this is at the WONDERFUL dinosaur museum in Mesa, Arizona. This place totally rocked!

I am posing underneath a giant mammoth at the museum entrance.

Okay, here is the real me!

Here I am next to some fantastic photograph of Arizona somewhere that was in a magazine. The shot is from the good side of my face as the other side is still a little crooked.

Picture was taken by Harley at the Mesa SW Arizona Museum in October of 2005.

My Face Now

Yikes! I turned into a t-rex! LOL Just kidding.

Having a little fun in the gift shop of the SW Arizona Dino museum in Mesa on our trip to Arizona in October.

People With Brain Tumors Are Beautiful Too

This is Harley's creation during our pumpkin carving. If you look deeply it is a rather happy pumpkin. Try this: take a sheet of paper and cover up the left side of the pumpkin face. See! Our pumpkin is smiling!

Harley worked hard and took great care in this design. The image illustrates what often happens to those inflicted with brain tumors such as NF2 or AN. The paralysis does not allow the face to move in the positions that it naturally did prior.

For this reason people may mistake the person for being grumpy or seeming unhappy. For those with NF2 and extremely large AN tumors, the loss of expression can be a very difficult communication barrier. First, sign language relies HEAVILY on the use of eye contact and facial expression. Without full freedom of movement of the facial muscles, it can be very difficult to discern if one is asking a question or making a statement.

Some people have facial paralysis on both sides of the face as NF2 is characterized by bilateral vestibular schwannomas (often referred to as AN for acoustic neuroma). What this means is that tumors grow on both side of the brain and can affect the facial nerve on both sides depending upon the size or shape of the tumor, and possible damage from either surgery or radiation.

In addition to becoming a communication barrier, facial weakness/paralysis makes simple tasks such as eating and drinking very challenging. Often those with facial paralysis chew on one side of the mouth and drink only through straws such as I have done for a year now. I still chew on one side of my mouth and it takes a very long time to make it through a dinner. Gone are the days of eating on the run (unless it is a cheese stick) or stopping for a "quick" bite to eat.

If you will also notice, there is weakness in the pumpkin's eye lid. This is VERY common. Those of us often become a drug warehouse or eye pharmacy. Since October of 2004 I have lost the ability to produce tears and need to use artificial tears during the day and gel drops at night. The gel drops help to paste the eye lids closed because the lid on the weak side cannot create a functioning seal and thus the eye dries out during the night. Failure the keep the eye lubricated can result in blindness. Many people actually "tape" their eye shut and it might be something I will have to start doing as my eye is sore and red when I wake up in the morning.

As you have read, facial paralysis is not simply a matter of looking "GQ" or "COSMO". The condition presents serious hurdles to overcome and life adaptations to be made. So the next time you see someone with facial paralysis think about everything I have mentioned and how beautiful that person is for their strength and perserverance.

Christmas 2004 - The Facial Freeze

This photo is from a year ago when we celebrated Christmas at my brother and his wife's apartment outside of Portland, Oregon. On December 14, 2004 (exactly 6 months post treatment) my face became paralyzed on one side. This is actually a really good picture and the reason it looks as if I am barely smiling.

I have to admit I was pretty horrified and pretty depressed last year. Just when I was expecting to get better I became struck with facial paralysis, I was having vision problems, and my balance was beginning to become a challenge. On top of that I was feeling sick and getting headaches. The whole ride down to Oregon I could not sleep and it felt like my head was in a blender every bump we hit on the freeway.

At first we thought that I had what is known as "facial palsy" and that it could possibly be remedied with steroids. Because it was the holidays I went 7 days without meds and started the steroids AGAIN the monday we left.

When I saw a neurosurgeon in January 2005 he corrected us that what I experienced was actually facial paralysis which is common for people with brain tumors. The paralysis is either caused by damage to the facial nerve from the tumor, surgery, or radiation. Because I did not have surgery the damage was from the tumor swelling or radiation. At that point we could not tell which or if the damage was permanent.

With "facial palsy" the facial and muscular weakness is caused by either a bacterial or viral infection. That is why there is a high incidence of response to steroid treatment over time.

In my case the steroids only seemed to help my balance a little. Thus I had to wait it out patiently for the facial nerve to regenerate (which there is no guarantee) and hopefully for the tumor to stop swelling, die, and possibly shrink relieving some pressure.

Well after 11 months it stopped swelling and on my past two scans the tumor has shown cell death. Now we are just waiting and hoping the dang thing will shrink a little (and hopefully give me back some balance).

My smile is not a 100% now but it has greatly improved allowing me to drink out of a normal glass without using a straw (after a year of only drinking through straws).

I have some indentations in my face now from: a) my face shrinking from not taking steroids since April, b) my body also shrank quite a bit and c) lack of use of certain muscles that had been paralyzed for a year.

It has taken me a long time to allow myself to be photographed or to show pictures of myself. I do have some extreme photos that I took the evening of onset but they are not on my computer. I will post them (probably in a yahoo photo album) once they have been uploaded from Harley's computer. To see another photo which better illustrates what the facial weakness appear like, please click the link in the title of my post which will bring you to the website and photo of our ASL meetup group.

Nightmare in Candyland

Updated notation: These additional photos above were added on 12-28-05 and were taken by my father Pat De Grand prior to Halloween. For the party photos please click the link title.

Hey here is a picture (click the link in the title of my post) of Harley's awesome costume when we went to the ASL (American Sign Language) halloween party at Bellevue Community College back in October. I just LOVE this costume. It is my favorite he has ever worn.

I am pictured diagonally from him on the website link. I dressed as a big green (LOL deflated) M&M but you can't tell from the picture.

Here is the story of our costumes that I explained in sign language to our friends:

Parents tell their children to brush their teeth before bed but sometimes little kids don't and hide candy under their pillow (YUMI!!!!!!). After their parents leave and shut the door the kids eat the candy in the dark and then fall asleep.

While sleeping they have a dream that they are in "Candyland" and turn into big M&Ms. While walking around and eating all these large candy trees (think of Willy Wonka's chocolate factory), an old hag appears (like the witch in the story of Hansel and Gretle). Because they have turned into big pieces of candy also, the hag chases them and tries to eat them!

As part of his costume, Harley had this fake leg chewed off at the knee that he hobbled around with. He would sign to someone "You hungry?" as there was food at the party. When they would sign yes he would offer his leg to the them. If they looked confused he would simulate how to eat the leg! LOL It really cracked everyone up and he won for the costume judging.

Go to page two of the flicker photos and you will see my friends Allison (the pirate) and Diana (the bank robber) from our weekly ASL meetup. We will be taking sign language 5 together with 3 other friends this coming January.

Music Update from an LDA (late deafened adult)

I actually have had many things to write about but of course so little time. After I last wrote the music fortunately changed and I began to enjoy a plethora of beautiful clarinet solos. What a rich and fullfilling sound. I am glad that I can remember it.

To name a few songs over the past week I have heard in my mind "Three Blind Mice"......LOL don't ask me where that came from. Maybe I used to play that song often when learning to play the clarinet as a young pianist would often practice chopsticks. I have to admit though that it is a good instrumental song on the clarinet....."Three Blind Mice".

Let's see, what I can remember playing in my head this week. Hmn. "Little Town of Bethleham", "These Three Kings".....played by oboe and other instruments, "The Star Spangled Banner" both in voice and a band or orchestra (I am hearing this very often....maybe because I have been watching episodes of "24"), "What Child Is This" and "Frosty the Snowman". I think there were more but I can't remember what played. I should have written it down.

Currently I am hearing "Noel". Or is it titled "The First Noel"? I can hear both instruments (flutes, a synthesizer, and many others) as well as voice. The man who is singing reminds me of the voice off the older cartoon version of "The Hobbit". His voice is very folklore type and irish sounding. Perhaps I am remembering an actual song from a Christmas special I saw as a kid. In any case, I really enjoys his singing. It is kind and comforting. I can picture in my head a cherry cheeked hobit or elf. It makes me want to kick back an watch my old favorite Christmas specials and "The Hobbit" again.

Saturday, December 17, 2005

All is not slient in NF2land

I began writing this post Tuesday night and got side tracked. Thus I forgot to save it. It is just as well as it is now late Friday night or early Saturday morning depending on how you look at it. My reason for writing was an effort to try to vent the constant noise in my head. It is ironic to me that I am completely deaf (no sound at all) but I am bombarded at times with sounds that are repetitive and often annoying for hours, days, weeks, and months. Sometimes it leaves me physically and mentally exhausted to the point where I walk around feeling like a zombie.

Maybe about a month ago (prior to Thanksgiving) I began to think about and miss Christmas music. At the time all I heard for weeks nearly 24 hours a day was the sound of police, fire engine, or ambulance sirens going off in my brain. Why? I have no idea. Maybe I saw one that set off the trigger in my brain. Often my brain must associate a sound with a sight. Somtimes the brain is unwilling to let go of the memory of a certain sound. Beyond my will or choice, it will play like a broken record for weeks on end.

In the past I have had varying degrees of tinnitus (ringing in the ears). When it becomes extreme and constant, the brain will often decide to give the ring a certain tone or sound from memory. When I first began losing hearing luckily the tinnitus would all of a sudden play the sound of scottish bagpipes which I found quite pleasing and peculiar until I figured out what it was.

However, after I became deaf I have gone through periods of not so pleasing and very annoying sounds! In October of 2004, I recalled the sound of one of our hanging halloween decorations. Now it was rather cool during Halloween as a hearing person. Unfortunately my dang brain must have thought it was too cool because it took over a month for it to go away. I even consulted with the nurse as I thought surely there must be something wrong or I am losing my damn mind! What happened is that it did not shut off one day. Instead it kept playing and even kept playing a version of imaginary batteries running out of juice making the sound even MORE irritating! I must say those were some pretty tough everready batteries as it played the dying battery tone for weeks!

When I was hearing I used to get a kick out of yahoo instant messenger sound options (especially the man saying "Goodbye!" and slamming the door whenever someone logged off). I am completely baffled by this one but for whatever reason, my brain kept repeating this our during our whole Arizona vacation. Talk about an annoyance!

Ok now back to the Christmas music. I must have really liked the song "Winter Wonderland" as that is the song I first thought about when I desired to hear Christmas music again. Well be careful what you wish for because you might get it and IN EXCESS! During our Thanksgiving visit to my parents there was a show that was Christmassy with snow and winter songs in captioning. "Winter Wonderland"was the song they played (I read it on the captioning).

I don't remember when it started really (sometime after our visit in November). My brain changed from sirens to "Winter Wonderland". That may sound really fantastic to you all. However, my brain did not select "Bing Crosby" or a cool instrumental version of the song. Instead it chose an electronic organ that sounded computerish or like an electronic Christmas toy. Arrgh! After a few hours anyone would have about enough of that.

I really do not know why of all the sounds and singers I have listened to in the past it chose something that made me just cringe. What is worse is that it did not stop and even began to play like a broken record skipping around and repetively playing a section like Max Headrom (annoying video guy from the 80s).

By Tuesday night it was driving me mad and into a weary stupor. I tried to go to sleep around 4 am but just could not get the sound to shut off. I so longed to hear the Christmas carols I remembered and Christmas mass at church while growing up. In the silence of the night but the chaos in my head, I begged God for some relief so I could sleep.

Suddenly the beautiful voice of a woman like an angel began to sing over the "Winter Wnderland" and I began to have peace. She sang "Silent Night". Her voice seemed so familiar (like Loreena McKennit but not). Her voice was so amazing that it moved me. Not wanting her to fade away and to be drowned out by the tinnitus, I began to cry in my half sleep. I thought about never being able to hear Christmas carols again and the beauty of music that I loved. I did not want her soothing melody to leave me.

I don't produce tears and I don't think I bawl where one would make alot of noise. I tried to hold it back but then gasps of air escaped my lungs and I began to quiver. Overjoyed to hear such an angelic voice to a very moving song and also in fear that it would be my last, I awoke Harley with my quivering. He held my in his arms until I fell asleep.

The "Winter Wonderland" tune did reappear but gradually other songs began to push their way in (such as "Ol Little Town of Bethlaham" and "Little Drummer Boy" to name a few). Fortunately the choice of instrument has also changed. I kept thinking what instruments the music sounded like.

At first it was like one practicing on an oboe, bass clarinet, and clarient. I used to play the clarinet from 6th through 12th grade. I had to go through the phase in my brain of practicing and learning to play. Naturally the clarinet took over in my brain and as of today I am hearing many Christmas tunes played by mainly a clarinet. There must have been one song in particular that I enjoyed performing in a past concert as it keeps playing. The sound is not bothersome however, and is rather comforting and brings back memories of days when I played this fine instrument. I had forgotten and lost the appreciation of making music that I had acquired through playing the clarinet. I am not sad or disraught about not being able to play the clarinet again but instead a smile is on my face as I recall the lovely sounds produced by the woodwind.

All is not silent but I finally have a little peace and contentment in my mind.

Monday, December 05, 2005

GRRR! Labels!

Wow! What was supposed to be a modern technological convienence to aid my now very poor hand writing as turned into a big pain in my RUMP! Seemed simple enough to just create an address list and to print off all my Christmas card address labels on one nice clean sheet.

In the past (a few years ago....well I guess at the for our wedding invitations I made 5 years ago) I had used Microsoft publisher. Unfortunately to my dismay I do not have that program on the computer I have now. Hmmn. I questioned whether I should forgoe the label operation but being the matching sort the labels matched my newsletter paper and cards. It would seem out of place to have the labels and not use them when I was going to use the paper. Then there is the fact that I must write rather slowly in order for things to turn out neat and legible. Even then my handwriting in an address could be easily misconstrued and the card undelivered.

I contemplated the outcome and thought of how long it would take me to handwrite all the addresses on the front of the cards. Yet here it is over 2 hours later and I am still fudging with the dang thing! Ok I finally figured out in WORD how to get the labels on the sheet the correct size and to make the proper number I want and create an address list to mail merge. HOWEVER..........I cannot get the dang mail merge to work and the addresses to show up in the label boxes! FRUSTRATING!

I have tried my darndest to be patient and to walk through the help programs /tutorials to figure it out on my own in a different program that I had previously been accustomed. I have spent so much time just on trying to learn how to set it up that I have not even written the darn newsletter first! Oh well! I guess my cards are not going into the mail tomorrow as it is way late and time for bed. I have an early appointment to get the dogs their vaccincations and for the first time ever I am taking them to Petco to be bathed and get their teeth brushed as it is much too cold for the dogs and I to perform the washing outside in the snow.

Just in case you were wondering, I get completely drenched during the washing process and we do not have proper washing accomodations for them in our upstairs shower. Last time I took them to the upstairs bathroom I had to basically shower with them and they are so big now that I got my legs and feet are bruised up trying to move them around (only the shower head works so I have to make them stand up and help support them on two feet). This is definitely not an enjoyable experience with my imbalance. LOL After the last shower stint and having them shake water all over the bathroom I said that is enough of the indoor bathing.

Can anybody help me with creating these dang labels?????? Sorry but I have a fixation on using them now and I have done most of the work already. All I need to do is to figure out how to properly merge my addresses into each label so I can print off the one sheet. When I do a print preview all that shows up in each label box is "Address Block" which is the stinking thing I am supposed to select to choose exactly which options in the address block I wish to print. I have gone through choosing and selecting but the darn address does not show up! I need to just walk away from it and get a good night's sleep. I guess I will try to make Tuesday my goal for mailing. Originally I was hoping to accomplish the mailing by Thanksgiving but it did not happen with their whirlwind of changing offices and reorganization here at the house.

Thanks and if you can help please post your comment here or email me. Have a good week!