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!

Saturday, November 26, 2005

Ominous Visitation

A very strange thing occured to me just now. I was going through my hall closet (that is what I have been and reorganizing the house and our lives so we can think and do). Anyhow, gifts were somewhat haphazardly thrown on various shelfs of our linen closet (for towels and bathroom necessities). On the bottom compartment in the floor area I had thrown gifts, lots of shopping bags, an old plastic shower curtain, two old shower heads (one that did not accomodate with our faucet), and I don't know a bunch of crap. LOL

While the other shelves were somewhat organized I completely emptied the compartment next to the floor which is about 2 and a half or three feet high. You would not believe the amount of empty bags (or shall I say useless bags) I had jammed into this small space. What on earth for? What the heck do I need all those bags for?

Upon emptying the space I vacumned any dust and wiped the wood floor down with furniture wipes. Then I neatly tucked all the gifts (even those on various shelves) and tissue wrap into this one space. Ahh! I was satisfied!

However, after finishing my arrangement I noticed the other "stuff" sprawled out all over the floor (such as the 50 gazillion shopping bags). As I sorted out which ones to put in the recycling and put aside the shower heads and curtain, I came upon an old back purse of mine. It is a cute little purse and in good shape except that the strap pulled out on one side.

Not knowing how I would sew this back together (LOL I don't sew) and realizing it was too small for my needs anyhow, I set my mind to putting it in the donation pile. I just can't bring myself to throw things out and who knows what crafty person is out there and would be tickled pink to find it at the nearest thrift store. Before tossing it aside in the Value Village boxes, I thought I better peruse through it first to make sure nothing important was left in there.

There were only two pockets (one a zipper and one to place credit cards in the front). Nothing was in the small main compartment. For some odd reason I decided to feel behind the little mirror on the flap. To my surprise there was something tucked behind it. "A business card?" I thought. What I pulled out just literally floored me.

Okay let's flash back about 13 years ago when I seriously thought it would be my last Christmas. I was diagnosed with cancer just days after my 21st birthday and started Chemotherapy in October of 1992. I remember the day I was given my diagnosis which was a complete shock. My hands shake as I write this just thinking about it.

I recall the day I went in. I was having some breathing problems and was really tired. I had been treated for what was thought to be asthma for a month before I found the lump between my clavicle and neck. Once the "lump" was there the doctor was baffled and ordered a chest xray.

Next thing you know I get a call from the doctor telling me that I did not have a lung infection and there was something unclear on xray. He consulted with some other doctors at the same facility that wanted to run additional tests. He did mention that it was possible I may have had Leukimia but not likely.

Being a college student I called my mom and told her but thought it really would not be a big deal. Fortunately my mother drove from Wisconsin to Upper Michigan to accompany me at the next doctor visit that friday. Thank God she came to the appointment with me because I could have never in a million years fathomed what was about to take place.

We first saw the family doctor who informed us that we were being sent to the oncology clinic upstairs where they wanted to give me more tests. I can't tell you what was discussed because I blanked out the moment the oncologist said I might have "CANCER". My younger cousin (who was 10 at the time) passed away a year prior to my diagnosis from a rare form of cancer. Even though I had very astute hearing at the time, I had no idea what the man said from that point on. I off envisioning my entire funeral (being buried in the ground on a crisp and cloudy fall day and the whole dramatization).

Next thing I know, the guy wants to draw my bone marrow. "You wanna what.....stick that huge horse needle in my back???" At that moment I did not think it could get any crappier because the pain of a bone marrow draw was like nothing I have ever known! To top it off it had to be done twice (once in each hip)!!!!!

After the procedure I felt I could barely walk let alone sit down. I tried to sit in the waiting room and the pain was too severe so I had to stand. I could not help but cry silently. I was embarassed and did not want anyone to see me but there was nowhere to hide in the small waiting room I was situated in. There was one wall I could face with a huge painting but I still could be exposed to the receptionists on the one side and anyone who happened to walk by the glass waiting room wall on the other side.

There was only one other person in the waiting room who was a gentle older man sitting in a chair behind me. I tried my damndest to hold back any tears but they slowly rolled down my cheek beyond my control. Still conscientious if anyone were to notice me, I would quickly glance back at the man to see if he was looking. He had his eyes closed and looked like he was concentrating really if he were absorbed in prayer. I thought to myself that he must be here waiting for his wife or another loved one who may be dying from cancer.

Happy that he was not looking but pondering his existence in this same space made me think about the gravity of his situation. Here I was very self conscious and vain and feeling sorry for myself while the poor man was stricken with grief of being a loved one of someone afflicted with cancer. It seemed like it was taking my mom forever to talk to the doctor so I had a great deal of time to stand out there and think.

Finally she emerged and we were able to leave. Before I made it out the door the old man looked up at me and gently touched my arm. I looked down at him and in the most sincere and hopeful facial expression and voice he said "God bless you". It was literally quite profound that someone with their own burden of emotion would take the time to think about me (a complete stranger) and pray for me.

Originally I was supposed to (or I thought) that I was only going to have 3 months of chemo or 6 treatments. When it had beaten me the worst was just before Christmas of 1992. My last treatment before the holiday I learned that I was not even half way finished when I thought I was closer to being done. Somewhere there was a miscommunication and the plan was 12 chemotherapy treatments over 6 months of time.

I was so disappointed and was so sick at the time. When I came home I thought it would be my last Christmas. Nobody had decorated the tree yet and everyone seemed kind of in a glum mood. I remember thinking "Well damnit I am not going to go out like this!" I remember getting the family on the stick and encouraging decorating the tree. I did not have any money so I made Christmas gifts that year that I am sure were pretty cheesy. LOL

I made it through the holidays and once I accepted that my treatment was going to be a little longer, I think I was okay. I don't know who (maybe my mom, one of her friends or my friends) gave me these little "pass it on" cards the size of a business card. One of them had a purple crocus flower on it poking through the snow. The words "Miracles happen to those who believe in them" were inscribed above the picture.

As it turns out and ironically, my last chemotherapy treatment was on April 9th, 1993 which was Good Friday. Not only was it the Easter weeken (when you see crocuses popping through the snow) but Good Friday was a day that Jesus perfomed yet another miracle. I did have a short stint of radiation afterward as a followup precaution but that is my day (April 9th) that I was given a second chance at life.

This past year has been a rollercoaster ride and I have wished that I had that card and a miracle. In the spring of 1993 I had a friend who was having a challenging time so I thought I had "passed the card on" during her confirmation. For years I thought about the card and thought about its significance.

Oddly enough I was wishing I still had the card and wanted that miracle over the last few weeks (primarily when I had to get my checkups and another MRI). Then I thought to myself "You don't need that card. You just need to believe" and that was that. Even though I am bumping around and still falling on my keister sometimes, I can drink from a glass again and I just learned to close my right eye and slightly open my left. Those may seem like simple things to you but are a miracle to me. Why? I have not been able to close my right eye without closing my left and I could only drink from a straw for a year! On December 14th of last year half my face seized up and was paralzyed. I only had 52% facial function on the right. Thus the latest progress had made me estatic!

My smile is getting near to what it was before. Now hopefully my balance and vision will be restored. I am enjoying feeling better and improving in areas but I enjoy it for the moment as I never know what is around the next bend. It has been a year and a half since my treatment and I was told it takes around two years (for which I thought was going to be symptom free aside from a few headaches.....boy I was wrong).

In the back of my mind I know I still have two more tumors to treat and I don't know how that will go. I wonder if I will get lucky or endure the same consequences as I have over the past year and a half. If the treated tumor does not shrink then I might have to get open brain surgery. The doctors do not seem to want me to think about this but it is hard to avoid as I know I will have to make another decision in the future. I remember when I had chemotherapy that I would be sick the first week and feeling good again right when it was back to go in a feel like crap again. I guess that is my fear.......just when I start to feel somewhat restored again it will be time to go back.

When I looked behind the mirror today I pulled out that card! No, I don't need a card to have a miracle or something good or positive to happen. However, I look at it as a sign. When I thought I lost it, my hope has been restored. Believe what you want to believe but for me this visitation or presence couldn't have come at a better time! Now it serves as a reminder to not give up.

Sunday, November 13, 2005

My Current Read

I don't know why but I stopped reading books for sometime now. Maybe I got bored or maybe it just wore me out. Of course I still read things on the internet. Maybe I was getting involved in discussions and research.

In any case, there are two books I am reading right now.

One is more of a daily affirmation kind of read titled "MIRACLES ARE HEAVEN SENT" by Honor Books. It is a collection of scriptures, quotes, stories, and poems relating to the mysteries of God. Each verse provides me a chance for reflection and uplifts my spirits.

The other book which I am really enthralled in at the moment is "Lucky Man" by Michael J Fox. In his autobiography he intimately shares his life and his current battle with Parkinson's Disease. The book gives me a sense of comfort and paints a vivid and honest account of his journey from childhood into adulthood.

I have always admired his outlook despite being diagnosed with an incurable disease (which may soon change with the recent advances in medical science). The point of the title is that he feels he has become a "lucky man" because of his disease. As difficult as it may seem sometimes, I feel that my own journey with NF2 has afforded me opportunties that I would not have known otherwise. In many ways I often think of how "lucky" and blessed that I have been.

Saturday, November 12, 2005

Human Pin Cushion

Disclaimer: I am backing up in time a little here to catch you up on my doctor visits and how I felt at the time. Since then, things have been looking brighter but I want to share with you the uncertainty and anxiety that NF2 patients face on their regular followup visits (occurring typically every 3-6 months).

On October 25th I had my 3 month followup MRI which I became anxious about a week after my last. Why? Because a week after my last MRI in July I had a headache behind my left eye which is the opposite the side of the tumor I had treated. Thus, one becomes paranoid about every little symptom or ache in fear of the other tumors growing. It is similar to the feeling a cancer survivor experiences once in remission.

How would I know what a cancer patient feels like you ask? I have lived through both. I remember that within a month of being in my remission I started having chest pains due to the scar tissue left behind and the weakening of my bronchials from radiation post chemotherapy. I remember internally freaking out as I would have a conscious nightmare that I was having a relapse with each pain. This lasted for years.

Likewise, people with NF2 experience a similar effect.....fear of the unknown but knowing what could possibly happen having lived through part of it. Prior, an MRI never bothered me really because my tumors started small and only grew about 1-2 mm every 6 months. It was not until I had an unwelcome surprise of a rapid growth of one over 6 months that MRIs became an anxious reminder of the tumors residing up there. It would not be so bad if I just had one, but I have several potential bombs just waiting to explode.

For the most part, even now I do not fear the MRI machine as do people who suffer from claustrophobia. In fact I routinely fall asleep in the machine. Back when I could hear it I used to pretend that I was an underwater welder. But drats! It it that dang needle that I have never been able to befriend after all these years!

Before you roll your eyes at my phobia, let me first elaborate on why the needle is not my friend.
a) my veins are small and hard to find
b) if my hands are cold, I appear to have no veins at all
c) once in, it takes a skilled person to be able to actually insert the needle correctly in the vein (from what I have been told, the veins either roll or the needle pierces through them)

Put it this way....I would have made the world's worst heroin addict because I would have never gotten any drugs in the vein! LOL All over the country at many different facilities there have been problems. Sometimes people who should have been skilled even make a literal bloody mess (meaning blood spurting out.....happens if the wrist is attempted). For past MRIs I have had facilities call in anesthesiologists to insert an IV for contrast dye or I have been sent to the chemo nurses beforehand.

I won't go into details of why I did not go to the chemo ward this time own irresponsibility. Anyhow I was there and realized that it was a rainy cold day. No matter how warm you dress it does not make a difference because you are given scrubs to wear during the MRI. That is fine in the summer when it is warm but in the winter my arms and hands get cool and the veins shrink oe hide.

I hopped on the table and hesitated for a brief moment realizing this. But then I thought "Well surely they remember me as I have been here every 3 months for over the past year and I would highly doubt anybody else has as many tumors as I have in my head." As a matter of fact in August 2004 I was so sick that I do not even recall getting the injection and friends had to drive me to Seattle for the procedure. The ladies in the office remember me and had told me a few months back that I was looking much better (than when my head was inflated like a melon). Therefore, I thought the techs would remember about my challenging veins. (How foolish and naive of me eh?)

First, they do the scan without the dye. Then they pull me out of the machine and give me the injection (or rather they insert an IV because of my small weak veins). Keep in mind that I am completely deaf and have my head enclosed in some kind of cage to keep it lined up correctly. Thus not only can I not hear, but I can't see what is going on or when the needle is going in or if it is working or what. I just have my arm and hand out there waiting for that part to be over with.

I think I do recall reminding the tech that only the hands work and that they may have to put some hot towels or a pad on them. Last time he got my vein in one or two tries. I cannot remember. He was very gentle so it was not so bad. However, my right hand was a no go. I knew my hands were probably not warmed up enough. I think in the past at other places they have left hot towels on for about 10 minutes.

I was hoping he got the vein but I did not feel the cold rush of contrast fluid pumping in my hand and up my arm. "Dang!" I thought. "Okay just be calm. He is being gentle and will get it on the next try." Unfortunately the next time he chose the side of my wrist which made me very uneasy. Visions of wrist nightmares in the past filled my head (not to mention that it did hurt in my wrist in the past). I felt the anxiety building but tried to remain calm.

Again he was not able to get the vein. I knew once I felt the cold alcohol wipe on my wrist that we had to start over. I could see his face and when I inquired he shook his head no.

Suddenly the other tech came into the room and both of them began to investigate my arms and hands while I lied deaf in my lonely contraption. It reminded me of my record of enduring 7 pokes after chemo had finished years ago and I needed a CAT scan. Back then my veins had been badly abused from chemo injections and it was difficult to find a healthy vein. I recall feeling like a lab animal sprawled out on the table while medical staff (literally 5-8 people) pawed at my hands, arms, legs, and feet desperate to find a useful vein. In fact, thinking back on the vision now reminds me of a vampire movie where the poor victim is sprawled on his back with the beasts feeding off every blood rushing appendage.

I tried to draw myself back to the here and now. "Ok. That part of life is over. I am just here to have an MRI and you have got to work with these veins to get this scan done", I was speaking in my head.

I think I told the techs that the record was 7 pokes for in order for them to realize the gravity of the situation and that it really can be challenging to get a vein on me. Then I felt this sharp jab into my thumb. I was clenching the cage with my free hand and I could not help but outburst "Dammit! Ow!" That was the other tech. Unfortunately he was unsuccessful.

Then he began looking up my arms and I told him that it was not going to work. I was pretty upset by now but tried to hold it back. I just just could not help the last outburst. What in the heck did he poke the top of my thumb near the joint? Nobody has even done that!

Despite my warning he decided to try the arm on that hand anyway. The other tech (the gentle one) held my hand and I think I squeezed the crap out of it and embedded my fingernails into his nail beds (not purposely). This one hurt too! I also remember having a fit and moving my legs and fit around. Again I cussed beyond my control. Then something totally uncontrollable happened.

I was so upset that I began to hyperventilate! If you have been reading my blog for awhile you will remember back to the time I was at a beach with friends and this happened. I could not believe it! The only thing I can figure is that the ordeal triggered a memory or flashback of going through cancer that was emotionally overcoming. I felt like I had no control and I had to close my eyes and focus really hard to get my breathing back to normal.

I probably really freaked the techs out. Lying there with my eyes closed they could not communicate with me. I had to think of something to try to calm down and breath normally again (like a meditation). In my mind I envisioned my friend Laura at the beach telling me to slow my breathing and watching her lips expel slow inhalations and exhalations. I kept that image in my mind until I could breath again and feel the warm sun and cool breeze from the water in my memory. Then I opened my eyes.

The techs wrote to me inquiring if I was ok and looked a little worried. Unbelievably I was able to crack a joke then and remark that it was too bad I could not drink the dye instead. After that episode the tech I swore at did not attempt to poke me again, LOL It probably was just as traumatic for him as it was for me as he looked kind of terror stricken when it happened and he asked again afterward if I was ok.

In all it took 6 pokes to get a successful injection (using only a butterfly needle). After my hyperventilating act I was VERY specific of only using the hands and leaving the hot pads on for longer. The right hand just would not go that day so what eventually worked was the left hand.

When I was thinking about this sometime over the last week I remember the courage of the little boy with leukemia. I think he was about 5 years old and I found out months after my remission that he passed away. One time back in the cancer days, I went for my blood test (which they took out of my IV). An older lady and I were there waiting and this bright beautiful beaming boy hopped up on the chair and braved the needle. We were so impressed because we were such ninnies about the whole needle thing but this boy was unfazed and brimming with life. I wish I could remember his name. Now that I remember I would like to think of him and the perserverance he showed despite all the pain I am certain he succumbed to.

Wednesday, November 09, 2005

God's Amazing Gifts. If you look, you will find them.

After a week of rain and darkness, something amazing happened when I went for a walk with the dogs on Sunday and Monday afternoon. On Sunday afternoon I noticed the sun peaking out and grabbed the chance to walk the dogs on our "magic trail". As soon as I left the house it started to shower again. Drats I thought as I did not wear my rain jacket but still had ample enough layers (helly hansen long underwear) and my waterproof shoes.

While driving out of the wooded part and approaching the open field near the across from the farms, I witnessed something magnificent! It was a huge bright rainbow. The sun was shining but there were still sprinkles creating a marvelous site!

What was so unique and unusal about this rainbow compared to the many I have seen in my lifetime, is that I could literally see the end of it and it was the brightest one I had ever seen!. While looking out into the field I realized that I would have to pull over to really focus on it. The rainbow literally traversed down to the ground in the middle of a field.

No, I did not see a giant pot of gold but what I did see in my eyes was completely surreal! I saw a brown image behind the rainbow which could have been either an old rusted car or a tractor. In front where the rainbow was bursting out with a profusion of color was a retiring dahlia patch! It was the only one around. I wish I had a camera because the image was so perfect and unbelievable! The beauty was a sheer delight!

I continued to drive and witnessed the entire rainbow spreading over the Nestle farm valley. The image was storybook with the sun pouring in from the west over the green and gold fields of the Nestle training facitlity (called "The farm") and plantation. To the east were clouds of white and greyish blue in large puffs throwing an amazing hue of color. The farm is painted white with some red buildings and a huge painted white and black cow. Across from the farm long white fences bordered by trees with golden leaves dot the road through the field to the picturesque buildings in the distance. As I drove east, I can not spot the river through the plantation of trees with falling yellow leaves and in the distance I could see snow resting atop the cascade mountains.

Just when I thought it could not get any more perfect, I was blessed with an even more glorious site on Monday afternoon! When I rounded the bend and sprung from the wooded area, There was a double rainbow! The second rainbow above it was much lighter but could still clearly be seen. The more vibrant of the two also continued to produce almost a third continueing directly from its lines of color.

The sight was so fantastic that I found myself needing to pull over a few times. When I reached the trailhead, a young woman pulled over to take a picture but the sight was much fainter and the powerlines running along the main road were in the way. I directed her to drive up to the Nestle Farm area where the rainbows looked glorious and a picture perfect postcard shot could be taken.

The rainbow almost seemed to follow us and I could see it along our walk. When we first got out of the truck it started to rain or maybe slightly hail tiny bits as seen on my dogs' coats. We jogged a bit in the sun and rain or hail under we reached the treeline.

I was surprised to see the rainbow through the trees still when we reached the pond which is our turn around point. The sunset was just as glorious and it was a hard choice of which side to gaze at (east for rainbow, west for sunset). The sunset was beautiful in puffs of pink and peach jutting out from the pale whitish yellow of the sun behind the clouds. Alas the gifts were coming to an end and we needed to turn back and head for home as it would be almost dark by the time we reached the truck.

Happy Belated Day of the Dead!

It took me awhile to create my master piece. I did a great deal of thinking about it and wanted something which would be cheerful but also significant in some way. However, I am not particularly skilled with carving and I do not have the patience to carve something extravagant which would require a great deal of time. Therefore I wanted something simple, easy, but that would also leave me with a positive presence. While under pressure to get it done before the holiday had passed, I carved my pumpkin Halloween night actually.

While in Arizona we visited the Mesa Southwest Museum and on display was a fantastic explosion of cheer and color in their traveling Day of the Dead celebration (Dia de los Muertos) exhibit.

It was so beautiful and seeing the exhibit brought beauty to the concept of death. Understandably no picture taking was allowed for this one section out of respect. So from my memory the creation of my carving represents the impression of light heartedness and wonder the display bestowed upon me.

Unfortunately the top of my pumpkin was a little soft near the stem. While hammering some tools into it to create the eyes, I put a large crack in the top of the head that ran from the eye socket to the lid opening. Because the picture was taken in the dark you cannot see it. Within two days (on the 2nd of November) my pumpkin succumbed to its injuries and the spreading softness disease. The mouth was so wide that I when I came in from walking the dogs on the 2nd, the fate of my pumpkin was a collapsed face.

Oh well! At least it died happy, eh?

Sunday, November 06, 2005

Meet Mr. Eggplant

Ahh! I finally figured it out. Aside from getting disconnected continually with our cable modem, I was able to find the source of my frustration in the settings of my popup security. Thus, I am once again posting photos. Exciting isn't it?
Mr. Eggplant was was born of my imagination during a pumpkin painting activity we engaged in at the Bellevue Community College Silent Voices (ASL club) costume party on November 3rd. Seeing as my other pumpkin was short lived, I was happy to have a replacement!

Old post 11-06-05:
Okay. Yeah well I was hoping to share some photos for you but this software is not working for me right now. I am following the instructions to add pictures from my computer but the window option is not popping up so I can choose some.

So I guess my frustration is a hint to go to bed now and get some sleep. Don't you just hate it when these things don't work???????

Old Dreams

Sometimes I feel so old. (sigh)

Harley was digging through old paperwork in the office and came upon some lists I wrote just 2-3 years ago. It amazes me when I look back at it on how many things I have done. The lists were mainly task lists of things we were to accomplish and my contribution. Sometimes I run across lists from when I was a supervisor for the WSDA too.

At first it struck me of how much better my hand writing was. It is almost unrecognizable to me now and I have to ask "Did I write that?" It is obvious that they were written by me but even with my good memory some of them I have no recollection of writing.

One list struck me with an eerie and melancholy sadness however as I see potential lost or vibrance and youth stolen. The list is as follows:

I want to fuel my body

1. So I can have the energy to get up in the morning and make the most of my day (gain fulfillment from production).

2. So I can provide an example of good health and success without using drugs for my brother, sister, and other young people.

3. So I am able to compete in the Seattle Super Skate (25 miles on rollerblades) in under 2 hours and improve my time each year.

4. So I have the energy and drive to pursue activities of my interests and dreams (rock climbing, hiking, etc.).

5. So my mind becomes clear and focused so I am open to my career aspirations in life.

6. So I have the strength and stamina to protect myself and to be prepared to assist and help others.

7. So I can still have stamina to contribute to remodeling our home at the end of the day. (This was assuming I would be putting in a full day of satisfying work making a contribution to society.)

8. So I can climb to the summit at Mt. Rainier and hike to the crater of Mt. St. Helens.

9. So I am still healthy and fit enough to continue scuba diving when I am in my 70s and 80s.

I never had a desire to climb Everest but I did have aspirations to hike to the base camp of Everest and climb Kilimanjaro if it became feasible.

I had somebody ask me yesterday what my hobbies were. Truth is I have a very hard time answering that these days as I can no longer do them or to the extent that I used to.

Before bed I reminisced about the days when I could rollerblade along Alki beach with such freedom and gracefulness of movement. I would glide in a tuck position from one leg to the other like an olympic speed skater.

It was such an exhilarating feeling. Even though there would be lots of people there in the summer months as long as the path was clear I felt solitude and serenity as the wind slipped through my hair and the smells of sea salt and wild roses permeated my senses.

Often I would go at dusk so I could admire the beautiful crimson sky hiding behind the black outline of the Olympic mountains. My balance was so well that I could continue in a tuck position and glide forward while my head was turned in a gaze over the waters of Puget Sound and the majestic mountains.

You see, it was moments like that when I felt really alive. Now those days are gone and I have to admit that now is a difficult place to be. I have to try to push those memories to the back of my mind or somewhere where they are not thought of often. Sometimes I can feel very an important chunk of my soul was swallowed beyond my will by a dastardly force. To cope I try to accept my fate but when I recall all such moments not so long ago, I feel like a very aged woman looking back in time at photos of her prime and youth.

Monday, October 31, 2005

Little Pre-Halloween Fun

Last night was almost a complete washout! Yumi and Dan picked me up and we were excited to do the salmon corn maze in Snohomish, WA. I forgot that with the fall back time change that it would get dark out an hour earlier but I had my hiking stick, head lamp, and I could always hold on to someone's arm if need be.

When we got there the entrance was all lit up but not many cars as it had started to rain. We were still prepared to go however as Yumi and I wore our rain jackets and waterproof shoes and Dan brought his umbrella.

While I was in the bathroom Yumi and Dan inquired about the presence of a map for the maze. Upon my return Dan was frantically writing something on my paper pad. Apparently there had been so much rain in the Snohomish valley that the maze was a mess of mud and water. We were guaranteed to sink up to our knees in mud and even possibly waist deep in some puddles......definitely the maze from H---! LOL

Yumi was still up for it as she had brought an extra pair of shoes and pants. However, Dan and I did not and really were not up for a cold weather mud wrestling event with the corn. Plus, in the dark and under those conditions it would be comparable to an unfit person attempting an ecochallenge with my bad balance in the dark!

Here is the link for a picture of the cool maze that became a washout this year:
Click on the photo to blow it up and take a better look.

Alright so the maze did not work but the haunted forest was at a park in Everett that I was familiar with. I was certain that with the higher elevation and established trails that we would not have the mud problem.

I think we were all hoping the rain would let up but it did not and it was dang cold in Everett! I was wearing a turtle neck, fleece vest, sweater hoody jacket, a good breathable rain jacket on top and water proof shoes. Yumi was dressed in the same fashion. We stood in line so long that we were starting to get cold. It was not that cold at my house when they picked me up or when they left Seattle. Poor Dan. He did not have a hat and only had a fleece jacket over a t-shirt. He had to keep going to the car to warm up and we eventually had to put a hand towel on his head with a plastic safeway fruit bag over the top.

I felt incredible sympathy for the volunteer monsters in the woods. All they had was their costumes on. They were out there in the rain and cold for hours! I don't know how they could stand it. I tell you they really worked for every penny of their fund raiser (The Everett Jaycees).

LOL I must say that when you are deaf, can't walk well in the dark, and have ocsillopsia (eye jiggling), your fear factor really diminishes. Those poor monsters. LOL They tried scaring and surprising me to no avail. They seemed to pop out from behind us and I could not hear them. Plus I was looking mostly at the ground to ensure safe footing. When I looked up it was hard to focus as the scenery was moving (due to the ocsillopsia). I had to stop, stand still, and focus to see what was ahead.

I could not help but laugh! I laughed at myself the whole time. Heck I probably scared those monsters. They could not tell how old I was but I was this woman hobbling along with a stick and laughing crazily!
They succeeded in surprising Yumi and Dan and I would not notice so Dan kept turning me around to show me the monster. Then I could not help but laugh at how funny the situation was. One monster was at a loss and just waved to me.

I think at one point I surprised a monster in this made up tunnel. I looked to my left and saw this large bag like object. I was wondering what it was so I started to jab at it with my hand and then it moved! LOL Poor fella!

Oh and I almost poked this girl lying on the ground. Moments before we saw a body lying on the ground. I could tell by observing the legs that it was a fake body. I mean who would be lying on the ground in this weather? So we were venturing up a hill (fortunately not downhill) and there was another body on my right where I was using my stick. Seeing as I had difficulty walking, I held onto Dan's arm with my left and used my hiking stick with my right. When we went up the trail it narrowed and of course while I am walking I cannot focus on objects well. I just assumed it was not a real body.

Thank goodness as I approached I noticed the reality of her hands and a ring on her finger. Then she moved! That was the scariest part just knowing that I could have possibly poked the tar out of her if I had not realized she was real!

In any case, even though it was not scary for me I really did appreciate the work that went into their whole setup. It was rather neat actually and after throwing a few Halloween parties myself, I know how much effort and time goes into decorating and creating a gauntly atmosphere. Additionally, I have wanted to go to this event for years but never got around to it. Even though I am deaf and my balance stinks, I wanted to do it while I was still able.

LOL Next year though Yumi and I made a pact to stick with indoor or warmer events. :o)

Wednesday, October 26, 2005

The Land of Make Believe

Like Mr. Rogers, can we pretend just for a day, that we live in a world where brain tumors don't exist? Can we go to the neighborhood of make believe where everything will be alright and our troubles will fade? Can we run and swing on the trees like Peter Pan and the lost boys in Never Never Land? Oh what fun it would be to hop, skip, and play ever so carefree. Or to be like Wendy, Michael, and John flying through the sky like a bird.

But alas it was time to go home and Tinkerbell's magic dust only held so much power. Even in Neverland creeps the darkness of Captain Hook and his crew. Still it would be nice to escape to Neverland or the Land of Make Believe. Some days I want to go to that place where time stands still and just pretend for a little while.


Yay! We got some pumpkins! The season just would not seem the same without our friendly old Jacks. I don't know if I have ever gone through a halloween without one. Last year we had our halloween party and I waited too long to buy the pumpkins and the grocery stores were all out. Yet my friend Catie came to the rescue and brought a perfect looking pumpkin to the party. I carved a neat turkey design into it to give my mom over thanksgiving.

Anyhow, these pumpkins are marvelous and were a real bargain at 9 cents a pound! In addition, the market I bought them at gave $5 off with a $25 purchase. Thus I picked up some needed things and the pumpkins (huge by the way 17 and 22 pounds) were basically free! Can't beat that eh?

The tricky part was carrying them up the deck stairs in the dark and in the rain. Remember that with my balance I cannot carry things up and down the stairs without holding onto the railing. Thus I have to carry something one handed or lean on the one side of the rail as I go up and down. (Today I was able to carry a 40 pound and 50 pound bag of dogfood up the stairs using both hands!)

Good thing that my strength in my upper body has increased a little (a while back I could not lift dog food or potting soil). I had to prop the pumpkin in my one arm like a football and grab the railing with my other hand. This was not an easy trick with a slippery sweater so I had to kind of use my hip and arm to prevent the pumpkin from falling out and try to hurry up the stairs.

I am excited to make something cheerful and extraordinary with our orange marvels! I bought one for me and one for Harley.

Oh and by the way, this year my head will not be the pumpkin (my face has fortunately shrank since I stopped the steroids)!

Sunday, October 23, 2005


I am sitting here buried in piles and mounds of paperwork. I come upon my teaching materials (yes there is lots of paperwork with teaching). I am at a loss on what to do with it all. Harley tells me to throw it out but like a pack rat I cannot bring myself to do so. I do throw out old tests but keep all my readings from graduate school.

To save us money we did not buy books but photocopies of writings from a multitude of books. They are all very good. Anyhow, These articles are stapled but loose. Before all this treatment ordeal and turn of events, I had a master plan to create a computer library catalogue of my articles and file them nice and neatly in order and by topic into large 3 ring binders. I did have them in binders while in school but (chuckle) to save money I would take out the articles every quarter and replace them with the new ones I needed the next quarter. Thus I accumulated several piles of paper which also includes lesson plans, tests, experiments, nature and science poetry, and etc.

To simplify things temporarily, I decided to attach them together with black binder clips which I have always loved. LOL I used to hoard them (especially when I worked as a supervisor for the WSDA). In fact I liked them so much that I finally broke down and bought myself a huge tub of them at Costco before I graduated with other sized paperclips.

Unfortunately my hands don't function as nicely as I remember them. It gets so frustrating. I fidgeted around with a medium size clip for probably about 5 minutes before I finally said "The H__ with it!" I just could not get it opened wide enough. If I pressed it against my leg and used the palm of my hand I could get it open to what it was supposed to be but then it would slip before I could get the darn stack of paper in there. I could not get it wide enough with just my hand. I tried several different methods and it just was not working. Then it dawned on me that what was meant to be a modern convenience has become an inconvenience and was taking much longer than it should.

I don't know if I will get the strength back in my hands. This week my left hand has been weak and even shaky while holding a glass of water at times. I suppose I should start doing some hand and wrist strengthening exercises.

I am very frustrated often......many things.....walking, the eye bouncing, the clumbsyness of my hands, the burning of my eye when I wake up, ramming into everything when I first get out of bed, etc. Sometimes I feel so I skipped several years overnight. I look at pictures of myself doing all these things as if it were 30 or 40 years ago and wonder what happened to that person.

Ok this is getting a little too emotional. On a positive note, my face has seemed to improve yet not a 100% and this week I have learned to drink water from a wide rimmed plastic glass. Prior, I could only drink through a straw on the left side of my mouth. I am still eating on the left side but my taste has improved (unfortunately giving me some sugar cravings......I ate a whole pint of Ben and Jerry's Half Baked Body and Soul last night!). So looking at the bright side, even though I am slow I can still enjoy eating and don't need to be tube fed.

Tuesday, October 18, 2005

Twinge, Pang, Snap!

Thursday morning I was awaken out of a dead slumber to a rude surprise. The calve muscle in my right leg seized up into a charlie horse bearing incredible pain. Half awake I attempted to stretch my leg while in bed but it was a no go. I stumbled out of bed and onto the floor in sheer desperation to straighten my tightly woven leg to get the muscle knot out.

Now I have had some of these cramps recently (over the past month to month and a half usually in the lower leg but sometimes in the foot). However, by stretching out my legs or feet I am usually able to loosen the muscle, gain relief, and return to sleep. Unfortunately the one on Thursday was a doozy and the worst I have yet (as far as recent muscle cramps are concerned).

Sprawled on the floor I eventually managed to unseize the muscle knot. Yet when I tried to stand up, my leg was in pain and it was even more difficult to walk normally and balance as I stumbled into the bathroom ramming my body parts into walls, doors jams, and shelves. In fact, the muscle has still been sore and tender over the last 3 days and upon first getting up I limp around or need to carefully descend the stairs.

What is the cause? Well it could be any number of things but I have put my money on the medication that I am currently taking, the Diamox, which depletes the body of potassium and sodium. There are different causes of leg cramps but this type generally occurs during sleep or when first awakening. Here is a great link explaining it:

While growing up I did have extreme leg pains at night when I was a kid. My mom told me it was because I needed some orthodic shoes or from growing pains. The pains seemed to subside as a teen and happened very rarely until I was a freshman in college. While doing laps in a pool for a swimming class, my calve muscle seized. Seeing as I was in water over my head, I had to grasp the lane buoy and a classmate came to my rescue to help stretch the leg.

Other than that, I only got these lower leg muscle cramps once in a blue moon when doing a long surface swim while diving. It is not an uncommon occurrence as one is exerting the muscles more on the surface with their fins while lugging cold water gear. Even when I had that type of cramp it was easily remedied by stopping, stretching the leg out, and taking things more slowly.

Knock on wood, my legs have not been cramping up the last 3 mornings as I have been trying hard to consume potassium rich foods: potatoes, squash, raisins, apricots, broccoli, and bananas. Here are a few links about the importance of potassium in the diet and what foods contain it:

Sunday, October 16, 2005

Enough Is Enough!!!

All right I am getting pretty ticked off here. Every since my first mini vacation to British Columbia I have been getting spammed on this blog by some inconsiderate meatheads. I went thru back in September I deleted the spam comments that I found. In case you are wondering it goes something like this "Nice Blog. Read mine at blahblahblah."

If you have seen this under the comments section please do not click on the link they have provided. This is a scam to get as many people to click their link as possible so that they can make money off the number of hits they have on their blog. I naively did not know this at first and clicked on one of these links only to find there was no identity to the owner. Then I received a plethora of comments on my blog that appeared to be from different people but I clicked on the links and was brought to the same page. Some of these comments even had the EXACT same wording but a different name attached. I have been trying to clean this up but I got attacked again while I was on vacation and another one appeared today.

Whatever you do, PLEASE do not waste your time and click on their link. The reason this is happening is because I opened my blog up to annonymous comments so that my readers (friends, family, fellow NF2ers, and whoever is sincerely interested) would not have to register and enter a password each time they wanted to leave a comment. I apologize sincerely but it appears that this method is not working and that I am going to have to remove annonymous comments from the blog.

I do sincerely like your comments and it makes me feel good that someone cares and is reading. However, to protect the blog, my time, and your time, I am going to have to ask you to register to leave comments so that this spam does not continue.

Thanks for understanding and I hope that you continue on the journey with me.

Now spammers.....GET THE H--- OFF MY BLOG!!!!!!

Saturday, October 15, 2005

Arizona Rocks!!!!!!

Hey we are back home now. I will write more about our fantastic trip when I get the photos off of Harley's computer. We left October 3rd and returned on October 12th. After flying into Phoenix we rented a car and drove to Chandler to visit our friends Chris and Darin Houle. We met their son Connor for the first time (what a cutie...he is almost 1 years old) and their dog Buddha. I would like to congratulate Darin and Chris as we discovered they will be expecting their 2nd child in approximately 7 months!

Just briefly here are the places we went: Black Canyon Creek for some hotwings, Sedona, the south Rim of the Grand Canyon, Slide Rock State Park, the Phoenix Zoo and Desert Botanical Garden, Kartchner Caverns in Benson, and the Mesa Southwest Museum of Arizona which houses the largest dinosaur exhibit in the state.

There is so much to do there that we could not possibly see and do it all so we called it the "taste testers" trip and plan to return.

Here are some great links to check out until we post some photos. I would recommend taking the online cave tour of Kartchner Caverns as we were not allowed to bring cameras inside the cave. We have visited 3 other caves on the continent and this one by far was the most impressive as far as preservation and living caves is concerned.

Kartchner Caverns State Park Cave Tour:

News Article:

Phoenix Zoo:

Desert Botanical Garden:

Mesa Southwest Museum:

Sedona (voted one of the most beautiful places in America):

Grand Canyon South Rim:

National Park photos of the Canyon:

Thursday, September 29, 2005

Post Birthday Trip Report

As mentioned in my previous post we took a trip toward central washington and southwestern Idaho (basically east and south of here) over my birthday.

Unfortunately due to my NF2 I can't do much driving nowadays. I used to love to drive. I drove for an hour from Moses Lake, WA toward Idaho and I started to "freak out". I am not sure how to explain it. I think maybe I am having an anxiety attack. I got to the point driving on this highway through rolling golden hills and blue sky where things seem to blend together and I was seeing mirages. Then it seemed as if my vision was getting blurry. I could not look to either side of me but straight ahead. After awhile I realized I had been white knuckling the steering wheel and I was so tense that my neck was starting to hurt. However, I kept going. I wanted to at least make it to Washtuca, WA. I was almost there when I had the last straw and needed to pull over. Everytime a semi or truck passed in the opposite direction I flinched and felt as if I would hit it head on. They were not so bad at first but the last one really scared me. My stomach dropped as if I had just taken a step off a bridge. That was it! It was time to pull over and pass over the keys.

We had a good time with my folks. We celebrated my birthday there a couple days early seeing I would be at my sister's on my birthday. Harley spent the morning fishing with my dad, we rode the boat over to visit my sister in-laws parents, and Harley went tubing. (hehe) My mom got a little sea sick because my dad started going in big circles and over big waves trying to knock off Harley. My mom and I went shopping for the three worst things to shop for but we had fun: swimsuits, sunglasses, and shoes (well that is a is an NF2 thing).

When we finally made it to my sister's (yeah 10 or 11 hours later because my dad likes to send people on long excursions even though there is a much quicker route) we got to meet her little "Spud" and boy was he fun! He is a Boston Terrier puppy and is 11 weeks old. We also got to check out their new home that they recently moved to (yes they are renting a new house that has never been lived in before!). It is a very spacious and pleasant 3 bedroom, 2 bath, 2 car garage in a newer neighborhood in Nampa, Idaho.

On my birthday we played mini-golf at the fun park. The two courses were really neat (like disneyland) with little old houses, bridges, fountains, rock formations, and the big head of some mayan or aztec dude. Afterward we got completely lost in the Boise corn maze and on both phases we ended up coming back out the entrance instead of the exit. Alas hunger overpowered us so we gave up and joined DJ (Michelle's boyfriend) for some dinner at Red Lobster. Hmmn those stuffed mushrooms and cheddar biscuits are always mighty tasty!

It was colder the last couple days we were there and Friday we had lots of wind so we tried to fly our kites in the farmer's field next to her neighborhood. LOL Unfortunately my cool looking and huge serpent kite was just that: huge and looked cool but flew like crap. The darn thing kept make a nose dive in the dirt each time we got it into the air. Thus Michelle and Harley kept having to chase the other end of it and launch it into the air for me. I could not move really because the ground was way too lumpy. If I moved while looking into the air I would have fallen over and my serpent would have probably buried its nose in the dirt again.

The ride home was long and difficult. I miss driving. Being a passenger is somewhat frustrating. I don't get car sick anymore but I end up passing out instead. If the road is at all bumpy (yes I am referring to the freeway) it is kind of disorienting and take lots of energy to see things normally. I try to read but it just becomes impossible after awhile and trying to focus completely fatigues me where I literally shut down. I basically can't keep my eyes open anymore and I end up passing out several times and forget what is happening or where I am. I noticed I was doing this passing out even on short drives to Boise and back. Yet those could have been because I was getting less sleep and trying to stay awake for a whole day.

We had a good trip and I am glad we got a chance to go out to visit. We figured now would be the best time because we don't know yet how the winter will be on the way there. We will now be heading down south on Monday for warmer weather in Arizona. It will be our first time visiting the SW region of the US.

Rafting anyone?

We have briefly returned. Harley had some time off during my birthday so we took a trip to see my mom and dad in Moses Lake and then onward to Idaho to visit my sister and DJ in their new home.

A few days to a week before we were to leave (on the 18th) Harley wanted to take me white water rafting. Before the last year (or prior to my treatment) I would have jumped at the chance! I have always been one big on adventure and this is something I wanted to do for a long time. However, the ugly head of NF2 side effects post treatment seems to have planted the seed of doubt and anxiety in my mind.

All the rivers in Idaho are apparently are at a lax right now and only the rivers that had been dammed all summer and the floodgates now open hold the promise of a wild ride. One such a river exists in Yakima, WA and is a class III river. Initially I was probably asked about it over the summer and it sounded cool. Yet after a travel plan was set, 3 days before my 34th birthday, and after experiencing the difficulty with lifting my head out of the water after tubing a few weeks prior, anxiety set in and I found myself fretting in a state of emotional turmoil.

On the spot and needing to make a decision a day or two before we were to leave, I felt like I had been sucked into the movie "Final Destination". Here I had thought since losing my invincible shield and going through the drama of the last year, I had become accepting and at peace with impending death. However, when contemplating white water rafting, visions ensued of me bouncing around inside the raft due to lack of balance with my eyesight jiggling, going over a mammoth rapid and getting flung from the boat, and getting sucked into the rapids unable to lift my head out of the water because of total disorientation. Unlike, getting flung off of a tube on a calm lake, I pictured myself getting carried away in the current with my head in the water where it would be too rough for anybody to jump in and save me. Wow! What a terrifying vision! Thus it became my focus to live past my birthday and I was kind of resistant to going.

Weird, eh?

We could have gone on a slow river in Idaho but the day we were thinking of going it ended up rainy or cold.

Friday, September 16, 2005

The Drifter

In and out, in and out, in and out. I am constantly drifting in and out. Sometimes I wander about in a state of fog. Pardon my language and bluntness but BRAIN TUMORS REALLY SUCK!!!!!!

Don't mind me, I am just in one of my "states" on this emotional rollercoaster ride known as "NF2". It is the deepest emotional pain I have known thus far. Perhaps I am really awakening now to the reality that I have several "brain moles" taking up residence in my head. I guess it never really came out over the last 4-5 years unless I experienced high stress to the breaking point. Otherwise, I have done a pretty good job of pretending they are not there and I was just losing hearing.

The first year was sort of emotionally hard but I put on my "invincable shield" and kept myself occupied with various activities seeing as the moles had not become a major problem yet. Ahh, how young and foolish I was thinking that because I kicked cancer, nothing could touch me! I held out for many years thinking "Gosh I must be one of the lucky ones".

Well it is here now and it is having its last laugh on me. The emotional pain is so intense! Sometimes I feel so alone in my somberness and grief. I don't want to bring the people down around me and I don't want to seem ungrateful and like I am complaining to those who have it worse.

I will end here as I need to try to get some sleep. Everyday is a period of ups and downs. There are days where I feel it is emotionally tearing my soul apart (as I once described to a fellow someone has put meat hooks into my chest and pulling hard enough to rip my heart out!) Thank God though that I am blessed with my husband and dogs who try to cheer me if they see me in one of my states. I feel very lucky in many ways but at the same time I am overcome with grief, fear, and a multitude of other discomforting emotions. This is more difficult than I had imagined. I would jump for joy if I could only just be deaf.

Thursday, September 15, 2005

NF Challenge

In case any of you are wondering....THERE WILL BE NO NF CHALLENGE THIS YEAR. Why? I have no idea really. All I know is that the NNFF (National Neurofibromatosis Foundation) changed their name to the CTF (Children's Tumor Foundation). My friend Kate and I were ready to run and maybe even a friend of hers. When I looked up the exact date it was not listed under Washington events on the CTF website. However, she saw it listed on the Northwest Runner website. LOL I started to wonder if I was going nuts! I also looked at the September schedule on the NWR site and saw it listed. I just could not figure it out. After careful inspection I realized the NWR had posted the schedule from a previous year and had the NF Challenge on a week day which just could not be possible.

For the past 3 years my family, friends, and I participated in the event to raise money for a cure for NF (both NF1 and NF2). I have NF2. Every year the funds are divided up between the two diseases and a researcher is awarded a grant for their project in continuing scientific advances toward the genetics and pathology of either disease. However, I had noticed a trend that more scientists seemed to be awarded for the research of NF1. Therefore, I had a portion of the funds I raised allocated specifically toward research of NF2 (The Adam Goodkind Fund).

This was a very important event for me as well as fun because it generally fell on or around my birthday so we would celebrate that too. No, I am not some great runner. The race meant a lot to me because of the fact that I was still able to run. Even if I did not enjoy the actual run (huffing and puffing along) I kept in my mind the people who could no longer do the same and thus I was running for them. It meant more to me then just handing over some money. It is hard to explain.

I used to also do the Seattle Superskate where one would rollerblade 25-26 miles to raise the necessary funding for Multiple Sclerosis Research. There would be moments in the course where my back would spasm and I felt great pain but when that would happen, I would think of the people who were never so lucky to be able to try out a pair of rollerblades or had their sense of balance and coordination robbed from them. Those moments are what kept me pressing on and it was an incredibly rewarding experience to cross that finish line (an honor). I did the Super Skate as long as I could (4 years) and then last year I sprained my ankle right after treatment. I thought maybe it would be possible this year but my balance declined severely and I have never been able to put the blades back on again. (anybody want to go for a ride in a wheelchair so I can try it out and push you along?)

In any event, I was fully prepared to run even though it is tremendous work now. The race had the option of a 3 mile and 6 mile. I always did the 3 mile. Last year I ran and I was so worn out that I think I collapsed when I crossed the finish. I remember my brother and dad being there.

I honestly have never run 3 miles since the treatment. The most I have done is about 20-25 minutes. It feels like I am running my heart out but in all honesty I think I am just jogging. It is hard because my eyes are bouncing up and down like I am running while looking through a video camera. Thus I have to look down at the ground and not the trail or anything around me. At the same time I have to concentrate all my energy into trying to coordinate my body and keep from tripping. I have run (jogged) recently (about 3 times over the past week and a half). I can make it half the distance that I normally walk. On a nice cool fall day it does feel somewhat good.

Special thanks to those who have participated with me over the years: Harley, Mom and Dad, Yumi and Dan, Chris and Darin, Kate, Michelle, Scott, and Denise. Also, I would like to thank the wonderful friends and family who could not be there but showed their loving support by helping to sponsor me and raise funds. I had an overwhelming response last year and I sincerely thank you from the bottom of my heart. I will never forget your gracious act of kindness! For those who have shown caring concern, accepted me as I am, helped me even when I was embarrassed to have help, and have just been there for me in many ways, I thank you too. NF2 is not pleasant but I thank God everyday for bringing people like you into my life. I feel very blessed!

I need to figure and sort all of these things out here but at some point if you are wanting to help with improving the chances or quality of life for someone with NF2, you can go to this website:

The name stands for "NF2, Advocates for a cure". From the homepage you can learn more about NF2 and in the left column is a heading called "How to Donate". Since this is an indiscriminatory disease, anybody of any race and any age can be affected. Therefore there are organizations worldwide that you can donate to.

I personally like to contribute to the following fund:

• Adam Goodkind NF2 Research Fundc/o Childrens Tumor Foundation95 Pine Street, 16th Floor, New York, N.Y. 10055

Saturday, September 10, 2005

Learning to Swallow My Pride

Yesterday Harley and I stopped in at 5th Dimension Scuba ( to pick up his new double tanks that needed a visual inspection and fill. For those who don't know, 5th Dimension is affilated with GUE (Global Underwater Explorers) who I respect and admire as the "gods" of research diving and discovery. They literally go "where no man has gone before".

Displayed triumphantly on the walls of the dive store are the most amazing photos I have ever seen! Why? Because the photos are rare and were not easily acquired as it took the utmost discipline, training, physical endurance, and concentration to obtain them! The pictures paint the beautiful and glorious alien world of the Mexican underwater cave system. It is a place where I could only visit in my dreams or hopefully after I have leave this earth.

It may not sound like such a task to the lay person to dive there but cave diving is one of the most dangerous and risky of sports. One must be in extreme physical conditioning, be highly trained in technical diving in overhead environments, and have an incredible sense of focus and skill. In addition, many of the underwater caves in Mexico are not easily acessible (meaning one must hike through an inhospitable and humid landscape to find the entrance to the cave). I am not talking about a bathing suit, mask, and snorkel either.....not even a recreational set of dive gear such as one might use on a tropical vacation. I am talking about carrying 4 tanks or more in a full exposure suit and equipment that the average sport diver could not even imagine!

The GUE divers were the ones to film the underwater documentary of the Britannic (sister ship to the Titanic).

As Harley was speaking to the man working at the shop, I tried to carefully and casually walk around the shop in a manner which would not reveal my imbalance. Heaven forbid I did not want to show my defect here! With careful focus and concentration I managed to move among the racks of dive gear without tripping or bumping into anything.

The man knew I was deaf as Harley signed to me where the bathroom was. That did not bother me. Initially years ago when I started losing hearing I was very self conscious about revealing my hearing loss to other divers let alone the tech divers! Now I really did not care about the deafness but the imbalance instead. It is like my kayak story. I just really hate letting it show when surrounded by more able body people who are experts in their sport.

Everything seemed to be going rather smoothly until it was time to leave. There were three cylinders there (all steel tanks which are the heaviest). Two of them were for Harley's new double tank system and one was my old tank which weighs 41 pounds. Harley grabbed his two and then nodded to me to grab mine.

Again I was caught in a moment of panic! He wanted me to carry this 41 pound cylinder out to the car? How was I gracefully or safely going to manage this? Afterall, it has been a year and a half at least since I dove! I guess I did not think about the situation when I first entered the store. I was just so focused on maintaining my balance and looking normal. Well fudge! What to do, what to do?

I never looked back at the man working there and for some reason after I got over the initial few seconds of shock, bewilderment, and problem solving of how I was going to accomplish this feat, I instictively and bravely grabbed my tank. I remember for a brief second feeling kind of "Hey I have NF2 and I am all screwed up! How do you expect me to carry this tank?".

I think I took a deep breath as I grasped my tank with my right hand. I could not carry it as strongly and confidentally as I did before. In fact, when I was younger and when I worked at a dive shop, I would customarily carry aluminum 80 tanks up on my shoulder (you got has kind of been a macho sport and for a long time it was very rare that a woman became a diver...50s-70s).

LOL I probably waddled like a penguin with my tank at my right side in an effort to counterweight my balance. It was not that far...maybe 15-20 feet to get out the door. Immediately outside the shop were 2 stone/brick/cement steps. I stopped there and contemplated what to do, I HATE going down steps that don't have a handrail! Plus I was carrying a potential bomb that could explode if dropped in a very unfortunate manner.

I stood there for awhile not quite sure what to do while Harley carried his tanks to the trunk of the car. Maybe I was hoping that he would come and get mine but I did not really feel like waiting either. I felt eyes upon the back of my head and wondered what the man in the shop was thinking. It is not uncommon for men to be diver's and their wives or significant others to not be (especially in the realm of tech diving!). Still it bothered me not to show that I was fully able.

I looked over to my left where it looked like it could possibly be all level and no stairs (a wheelchair acessible route) but I really was not sure. Plus it was a long way to go (3-4 times the distance as opposed to the 10 feet it would take to make it to the trunk). If I went around surely the man inside would wonder what the heck I was doing. LOL

Harley looked back at me. The door of the dive shop was open and the man was by himself. I have no idea if he was watching us or not. A little embarassed I said to Harley "It is a little harder now because of my balance." Then I had an idea. These steps were pretty low and flat. I decided to set the tank down on the one step and support it with my right hand and then step down with my body. I did that for the two steps and made it to the trunk of the car.

It felt great that I was able to bring my tank out to the car but if I had not been put in the situation I think I would have let Harley do it for me. I had not thought about it in a long time. While we were driving away, I chuckled at myself for being so self conscious and worrying about what the guy at the store thought.

If I am ever able to dive again I have lots of work to do. I have lost a great deal of strength in my upper body but it is slowly returning. There was a point when I could not carry a bag of dog food anymore. As a matter of fact, it took loads of energy just to slide it onto the bottom of my dang cart at one time! However, after taking the three tanks out of the car and carrying them the short distance to the garage, I was able to carry the dog food (a 40 lb bag) up the stairs of the deck and into the house. Both tasks drained me but I managed and got them done! :o)