In Loving Memory of Grandpa Curly

On Friday August 11th, 2006, my grandpa Curly (De Grand) left this world to begin a new existence. He valiantly battled a blood cancer (plasmacytoma which progressed into a multiple myeloma) since October 2005. Last week in the peace of his home and comfort of his wife and friend God called him home.

In November 2006 I will walk a marathon (26.2 miles) in honor and memory of him. My efforts are in support of the Leukemia and Lymphoma society's Team in Training program. While training to complete a marathon those of us who are team in training members not only strive to increase awareness of blood cancers, but also help the society raise money to attain its mission to cure these types of cancers.

My grandpa was always a fast walker and LOVED the outdoors. His spirit lives in me and has been the motivation for me to believe I can accomplish something like this despite the hurdles that have been set in my path. I know my grandpa will be with me every step of the way.

Please click on the lighthouse link in the post title to see some photos of my grandpa I would like to share with you.

The following poem I would like to dedicate in memory of my grandpa who I believe is still with us.

Do Not Stand At My Grave And Weep

Do not stand at my grave and weep
I am not there

I do not sleep
I am a thousand winds that blow

I am the diamond glints on snow
I am the sunlight on ripened grain

I am the gentle Autumn rain
When you awaken in the morning's hush

I am the swift uplifting rush of quiet birds
In circled flight

I am the soft stars that shine at night
Do not stand at my grave and cry
I am not there

I did not die

- Author Unknown

Brain Port

This highly interests me. Some people dream of being able to hear again. Yeah that would be nice but what I truly crave and long for is the sense of balance I once had. Some days it is absolutely painful (emotionally) to know what I used to be able to do and not be able to do those things anymore. I watch all forms of life and ages.....from the smallest infant tumbling and learning to stand to an elderly person exhausting him or herself just to walk to the car or cross the street.

Balance absolutely fascinates me and I WANT IT! Balance is something in life that most people (those not balance challenged) take for granted and not think about. Just putting on a pair of underwear which was such a simple carefree thoughtless task before has now become something in my conscious mind and a reminder of where I am at.

After swim lessons the other ladies are able to whip on their clothes in a hurry. It never fails that I am most often the last person out of the locker room (if I get out of the pool at the same time) and I have not even showered or combed my hair. I was just trying to put on my damn clothes! To put on my underwear I have to hold on the wall with one hand and carefully slip each leg/foot in its appropriate openning. Then for the pants I must sit down on a bench.

Before I used to be able to run up and down stairs with ease often carrying a backpack or over the shoulder book bag. I have now adapted to loading my one arm with bags and grasping the handrail firmly with the other. Ah going down the stairs...well that is just plain terrifying and I must be extremely cautious (especially if I am carrying something in one hand).

Hiking.....I have always been a person to climb around on rocks and step toward the edge to peer over. I was always confident with my sense of balance and never worried about toppling over or falling of a ledge. Now walking on a flat bed of river rocks is a major accomplishment.

There are others: rollerblading, skiing, biking, waterskiing. There was so much more I wanted to do also.

But just the small things like putting on underwear and walking freely down the stairs without fear of falling. That would be really nice.

Lethargic

Wow! I am really tired today and I don't know why. Yesterday I took a day of rest from walking because I had my swimming class. Today is normally the day of rest but I changed my rest day to Sundays most weeks due to the swimming class. I normally do not get out to walk with the dogs early enough when it is cool and it is hard to walk most often after swimming due to the different coordination required. My brain becomes rewired differently and needs a day to adjust.

I am pretty sore too but I did not swim that hard last night. There was lots of rest stops and instruction between swimming to either end of the pool. I can't tell if I have water in my ears like hearing people. I wonder if other deaf people know if they get water in their ears? I will have to ask.

In any case, I went to bed with lots of head pressure. I tried clearing my ears to no avail. Additionally, I think I might have taken a double dose of my medication. I just could not remember. But I vaguely had a recollection of taking it an hour earlier. I was not sure if I was recalling it from another day. Still better to take a double dose than none as the medicine is trying to save my sight. If I did take a double dose it would make me lethargic so maybe that is what happened.

As to why my body is sore I don't know. I do remember having a dream of running on a beach carrying a heavy water bottle in each hand. While growing up I would have dreams of being chased or physically exerting myself to wake up tired. So maybe it is a combination of everything.

For those who might be kind of freaked about me over medicating, I was on that same dosage when I started the medicine in February of 2005. It did make me extremely tired back then. As the swelling of the optic nerves went down, I was lowered to the present dosage. I did stop for a month in March 2006 but the swelling returned and I have been back on the medicine since April 2006.

When You Least Expect It

Here is a funny story for you all:

I did not get much sleep last night even though I tried to go to bed early. It seems I woke up every couple hours so when 6 am rolled around I was dragging pretty hard.

This morning was our early practice for the marathon. Since our marathon start time will be 7:30 am and we will then proceed to walk 26.2 miles, our Saturday practices start at 7:30 am in order for us to adjust to this schedule.

Anyhow, it was a long practice and then I remained awake the rest of the day by visitng a friend on the way home and doing other errands. With the increase in temperature I became very lethargic when I got home and lied down for a nap about 4 pm. Apparently my nap turned into a 2 1/2 hour siesta as Harley woke me up when he came home. I would have continued to sleep otherwise.

When he woke me up he was laughing because here I was spralled out on the couch in nothing but my white cotton underwear and Team In Training shirt in front of the fan. IT WAS HOT so I ditched my pants!

While I was in this state keep in mind that even a bomb would not wake me unless it shook me off the couch! When I got up and looked at the end table next to the door and noticed a brochure with a man's picture on it. In blue ink was handwritten "Came to your door to introduce myself. Sorry I missed you!"

WHAT?????? SOMEONE WAS HERE WHILE I WAS NAPPING IN MY UNDERWEAR!!????

Because I am deaf people who know me always know to get a hold of me over the computer or text phone first so that I know to look for them and what time they are coming by. Also, I live in a rural area where our house can not be seen from the main road so I never have to worry about anyone I am not expecting coming over. Further, the dogs (even though I can't hear them) bark and most strangers figure it is a lost cause. For example, the mailman does not deliver packages.

So given all of the above, the last thing I expected was to be caught snoozing in my underwear by anybody besides Harley. LOL KUDOS to our visitor who appears to be running for a local office. He REALLY went out of his way in an attempt to introduce himself!

WELL THAT BITES! (Literally)

Gee I just noticed that my 3rd or 4th tooth crumbled apart. I can only guess that it either happened today while I was eating or while I was flossing as the gum area is bleeding.

Wow that material I read about teeth decay after chemotherapy and radiation was no joke! You expect all these things to happen instantaneously but these effects are long term. I read about it while going through chemotherapy 13 years ago and right on the dot the teeth problems started within 7-8 years but rapidly advanced following my radiosurgery treatment in 2004.

It is an ironic thing...dry mouth. Apparently my mouth gets to dry sometimes which increases tooth decay. However, I noticed myself drooling profusely today.

Yeah I have not told your that yet. I need to keep conscious and aware of many things. Drooling is one of them. If I am concentrating really hard on something and don't realize my mouth is not fully shut and especially if I happen to be looking down doing something like chopping vegetables or reading a book, I start drooling on myself like a baby.

A few times I have caught myself doing this in public and startled I quickly concealed my habit and looked around to make sure nobody noticed. Because of this drooling habit, I was thinking my dry mouth habit went away and I started doing behaviors not condusive to a dry mouth habit.

In particular, I had swallowed a large lump of rice from a Thai dinner about a week ago. I literally started choking as the lump became lodged in my esophagus. It felt like I was having a dang heart attack! If you have seen the sequel to the movie "Underworld" where Scott Freeman (who has become a lycan) tries to eat normal mortal food it is like that, I had an incredible pain in my chest and started gagging as I could not swallow the lump of rice. I could not fully lodge it from my esophagus either. For those who do not understand why I am such a slow eater, this is one of the reasons why. If I take too large a bite I either cannot chew with my mouth fully closed or I nearly choke when I tried to swallow such a massive bite.

Anyhow, the tooth must have fallen apart when I got brave and crammed some tortilla chips and snack mix with nuts down my throat. This evening my throat started to swell up and become sore. I then remembered the scratchiness of the chips I forced down the food tube. In the mist of munching and grinding on the crunchies, a piece of my tooth must have broken apart and I swallowed it!

This one is pretty bad and I am not sure what will be done. I was due to have a crown put on this tooth (yes I had a root canal done on it a few years back and never got the crown due to the expensive cost.....AHEM! LET THIS BE A WARNING TO YOU DJ TO GET YOUR BUTT INTO THE DENTIST AND CROWN THOSE DANG TEETH!)

I have a new dentist as of last summer who did root canals and placed crowns on the other teeth that crumbled apart last summer. Last time Harley was at the dentist he reminded him that I have one more crown to put on the tooth with an old root canal. I have a cleaning this month and was thinking about when would be the best time to schedule the appointment for (HOPEFULLY) the last crown I will need. I guess this incident has determined when I will be going in which will be a little earlier than I was thinking.

Gee, I remember when I was a little kid that I thought someone in their 30s was old. LOL then I became a teen and thought wow 30s must be the life! Now I am back to thinking I often feel very old in my 30s with all this stuff that happens. I keep falling apart and finding ways to piece myself back together and salvage what is left!

Running Update

If you have been reading you know my difficulty with running. Last spring I found out that I was improving my balance to the point that I could run at least 3 miles. One day I decided to run longer than that which worked out until my drive home where I got such a bad migrane and pain behind my eyes that I vomited something black (which doctors determined might have been dried blood from the nose bleeds I was having).

As it turns out my optic nerves were swelling again and I had to go back on medication. My one doctor told me that the running might be causing too much pressure to build up in my brain. Okay but I was determined to run my 3 miles in the Relay for Life (to which I collapsed for a short bit afterward.....tell ya later).

In June I fell on my tailbone and bruised it very badly. It has taken this long for it to heal so I have not been able to run at all. Then I began to experiment at Saturday practice over a week ago. I wanted to do 2 laps around the park and it seemed like many people were running around me. Therefore I sort of jogged in little spurts (for only about 10 minutes) but it made me dizzy.

On friday night (not sure exactly) Harley and I took the dogs walking but it was an hour before sunset and the squeeters were out. Thus we had no choice but to run on the way back. I just kept running and reached the open field before I thought I would (we had to run past the stagnant ponds and the creek which are prime breeding grounds for the beasts). I think I ran for about 18 minutes and then I walked.

Yesterday however, I did not have the dogs with me so I decided to try to go for a half hour run. I ran for about 32 minutes and walked the rest to make it an hour. Fortunately the weather has cooled a little and there was a slight breeze. I did not seem to have pain but the coordination for running was challenging. Yet I was able to run for 30 minutes which I have not been able to do for over a month!

Here is a link which explains one of the reasons I cannot run too far and why at certain times I have difficulty with night driving. The best way to describe my life in motion (walking, running, riding on a bumpy road) is like constantly viewing life through a home video camera while in movement. Sometimes (depending on what shoes I am wearing and the terrain) life is like living without shock absorbers (like riding in a car with no shocks). I first noticed this maybe a year or more ago while walking down to the mailbox. I could feel every little bump and pounding of my foot on the gravel drive. It was as if I lost any sense of shocks on my body and the vibration resonated through my spine shaking my skull and eyes.

http://www.tchain.com/otoneurology/disorders/bilat/bilat.html

I have learned to get used to this but yes it is very tiring at times. It takes a GREAT deal of energy and concentration to adapt and get through it.

Swimming Lessons

LOL Yes I am like a kid again starting over. I am taking swimming lessons and even with being deaf these are the best swimming lessons I ever had in my life. I waited a year to get into the class as they fill up fast and I was not quick enough to sign up (there is actually a waiting list). The classes are offered through Team Survivor Northwest which is a fitness program for women cancer survivors and patients. The mission is to keep women in a healthy life style and get them active again.

My classes are every Sunday at the Mercer Island pool and I greatly look forward to learning more from our excellent coach "Ed". There are two pools a) an olympic size lap pool and b) a shallower pool which is half the size. Those who are advanced swimmers practice laps in the olympic size pool. Most if not all of those women are training for the Danskin Triathalon in August with coach Mary of Mary Myer Fitness. The rest of us are in the beginner class and we are taught by Ed who if I understand correctly has been a collegiate swim coach. He is awesome! If you did not know better you would think he was born in the water and was a "merman".

Now some of you who have known me a long time might be sort of confused (especially if you grew up with me or know my history with the water). I have always been a water child and would have been happy had I evolved a set of gills. My favorite memory of the water while growing up is jumping off the ford river bridge in the icy ford river in early summer/late spring and also playing the rock race game at "Dut's" swimming hole. What is the rock racing game you wonder? LOL Well being a rural country bumpkin we were good at using nature to create things to do. We used to find a heavy rock (not too heavy but just enough to keep you at the bottom of the river) and race across the river bottom. Yes sometimes the depth must have been 3 to 4 feet over our heads! We would hold the rocks and scurry across the bottom of the river holding our breath to see who was the fastest. What a blast!

In college I took an aquatics swimming class (to meet one of my PE requirements) and then went on to take Lifeguard training, PADI basic open water (scuba) certification, PADI advanced open water certification, PADI rescue diver certification and specialties through SSI in night diving and low visibility. In addition, to get some more dive time under my belt, I volunteered as an assistant for the diving organizations PADI, IDEA, and NAUI.

So why the heck I am in the beginner class? The tumors destroyed a great deal of my vestibular function. I was absolutely shocked on the third day of treatment to almost drown in 4 feet of water at the hotel pool. I loved just playing around in the water and decided to close my eyes in the chlorine water and do a summersault. Well the summersault never happened and with my eyes shut I could not stand up nor find the surface. Desperate for air I had to finally open my eyes to determine why I could not find the surface in such shallow water. I was alone but thanks to my history with the water I was able to stop panic and think my way out of the situation.

I have tested it out in a pool over the past year. If I close my eyes I cannot complete one full summersault rotation but with a mask I can do 6 perfect summersaults in a row on one breath. The class is to learn the proper technique of swimming I never learned in order to be confident with my skills in the water. When I see water I still long to jump in but the incident brought forth some aprehension that I am working to overcome through greater confidence in my ability.

I love the water and I am not willing to give it up so easily! That is one thing I have learned about NF2. I have experienced many unexpected changes but with learning the right adaptations I can continue to have an active lifestyle.

OUCH! (like the way ET said it)

Photo taken by Harley Dufek in Ochos Rios, Jamaica on June 27, 2006 aboard the "Sinara" Trimaran.

Check out that right knee (the one closest to you in the picture). Actually it does not look too serious of an infliction in the photo but it ended up being pretty bad.

Seeing as our mission was to snorkel the whole time ashore in our first port of call in Labadee Haiti, I did not bring my walking stick with me. For one I did not want anyone to steal it while I was in the water, and secondly I did not imagine I would need it.

After an hour or more of snorkeling we decided we better take advantage of the free lunch provided at the island bbq as it would be awhile until dinner. In our hurry to be the last ones to grab some food before they shut it down, I tripped walking over the lumpy yet hard sand dirt road. Unfortunately the sand was rather abrasive due to its makeup of fine coral particles. Therefore it left my knee an awfully bloody mess.

What was even worse is that this happened in front of duck boat (busload) of people. Being on vacation I am sure they thought I was some fleusy who had a little too much rum! LOL I arrived at the bbq with blood dripping down my leg and had to get a cold glass of ice water and a napkin to clean it up (the ice water is safe in that spot as the area is owned by the ship and all the food and water is provided by the ship).

When I fell I did not imagine it would be such a nasty wound. Each time I went snorkeling it got worse and a big ugly scab formed with a rash around it when I returned home. It is gone now but a definite pink scar the size of a quarter is in its place to match all the bruises on my body.

Falling injuries are quite common on a daily basis but often I forget about them unless they are more serious such as when I fell on my tailbone down the stairs and falling on something abrasive such as coral sand. Bruises will show up on my body that I cannot account for as I get used to bumping into objects and falling as a normal part of life now.

My lastest falls (close calls) yet not as serious include: falling like a tree on top of our luggage behind the antique wood frame couch in our hotel room (I bruised and scraped my armpit area), slipping down the stairs again last Sunday trying to hurry to my swimming class (fortunately I did not reinjure in tailbone but formed a large bruise and scrape on my forearm), falling yesterday on a pile of tools (including some kind of small router saw that was fortunately turned the opposite direction) in the spare bedroom filled with things we have no place for, and today I did something on the stairs that hurt momentarily. I know I will have a bruise on my shin as I whacked it hard going up the stairs. The rest of the details and my other bruise incidents have left my memory.

ILY Snorkeling - (a sneak peak)

Photo taken by Harley Dufek on June 26, 2006 in Labadee, Haiti.
ILY- means "I Love You" in ASL.
Here is a sneak peak at my very first reintroduction swim in the ocean since the first day of my treatment in July 2004 when I went boogie boarding off Santa Cruz beach. The photo was taken in the waters off of Labadee, Haiti which was our ship's first port of call.

Although I needed assistance in and out of the water, I was thrilled to be able to snorkel and finally return to the underwater world which I love so much.

In the caribbean it is the law that you have a snorkeling vest so that is the black thing draped around my neck. I did not mind as I was able to float along over everything without having to worry about swimming. It was difficult at first to remember that I was not diving. The vest sort of gave me the feeling of a scuba BCD so every now and then I would forget and put my whole head under the water while still breathing on the snorkel. Hehe...nasty awaking swallowing that salty water!

I have not realeased the photos yet (I will soon) but I did suffer a significant facial paralysis for more than a year. At the worst point, I could not move half my face and I was concerned back then (not only of looks) but of whether I would be able to breath off a snorkel or regulator. For a long time I did not want anyone taking pictures of me and I did not want to show anyone photos of me. Thus the long absence of photography on the blog for a period of time.

Fortunately I have regained most of my face back (there is still some facial paralysis which you will notice in pictures of me.....most notably the framed formal anniversary photo I posted). However, I have gained enough function back now to breath on a snorkel with ease. I can even sip on my hydropack now (I am pictured wearing it in the Mayan Ruins photo of us) without having to hold my lips shut. We will see how it works with a scuba regulator when I am ready to try it out.

If all else fails, the snorkeling worked out great for me (with the exception of getting out of the water on shore.....I cannot stand up in water at my knee level or below!). We snorkeled for I think 2 1/2 to 3 hours in Haiti and then went from a boat in Jamaica and Grand Cayman which was nearly not long enough.

An addition to the link of the last post "Baffled"

In the last post I included a link which brought you to a page titled "How deaf people hear".

Unlike most deaf people, I and many others with NF2 hear nothing at all. Our world is completely silent except for the occasional tinnitus (ringing in the ears....noise in the head) that visits us.

Therefore, I would like to inform you how I have adapted or how to get my attention.

Waking up:
I would not even wake up if a bomb exploded outside my house (unless I felt the vibration which would have to be rather intense). Therefore I have a special alarm clock called a "bed shaker". LOL No it is not the same as those coin operated beds you see at cheap motels in the movies. A flying saucer shaped device plugs into my special clock. I put the saucer under my pillow and it vibrates the heck out of my skull when it is time to get up!

Phone:
I don't answer it because I cannot distinguish between a call for me over relay or a call for Harley. If it is for Harley and I answer it there is no typing to read on my phone and it is a dead end for me. I DO have a light flasher Harley installed to the ceiling of my computer armour. When the phone rings this light blinks and and off. If the call is for me and someone has called over WA Relay for the Deaf, an operator will type a message for me that I will read on a small screen on my phone. This special phone is mounted next to my computer and if I am at the computer I can call the person back right away.

Door:
It used to be that the dogs alerted me by barking but I can no longer here that. Since we live rurally we do not get many visitors so I do not have a light flasher for the door. I usually know when someone is coming by and I can watch for them. My computer is in the loft overlooking the front door. When Harley comes home, I can feel the vibration of him closing the front door through my feet (If I am in the loft). I don't wear shoes in the house (only barefeet or slippers in the winter). This also works if I drop something bigger than a piece of paper in the house. I can feel the vibration through the floor. Note: While on the boat my stateroom had a door flasher. There was a device or box that had a seperate light for each thing (phone, alarm, door, fire). When the lights would start flashing I would look at the box to determine if someone was at the door, if the phone was ringing, or if there was an emergency.

Getting my attention:
IT IS EXTREMELY IMPORTANT TO TAP MY SHOULDER GENTLY AND NOT TRY TO YANK THE DANG THING OFF! SOMETIMES I MUST FINISH WHAT I AM DOING AT THE IMMEDIATE MOMENT SO IT DOES NOT LEAVE MY MEMORY. If I am in somebody's way at the store I greatly appreciate a polite tap instead of being rammed in the rump with a shopping cart. Yelling and stomping as loud as you can would be futile since I hear nothing. If possible the best method is to flash the lights on and off as long as it is safe (meaning I am sitting down and not trying to walk down stairs or something). Deaf signers are also used to routinely getting each others attention by waving (small motion like you need something if the person is close by). Big waves are fine if there is a great distance between you and the deaf person.

Babies crying:
The ASL GLOSS "Ain't Got None!" Many people would find deafness in this case a blessing as I am NEVER annoyed by ANYONE'S cyring baby or any other loud disturbing sounds. ;)

Baffled - Can you drive?

Starting this winter/spring I started bringing my dogs in to the pet store to have them washed. For one, we only have cold water outside and I get completely soaked which does not feel too nice when it is 50 degrees or less outside. Yet most importantly, my balance has deteriorated to the point that it is challenging to bathe them and can be dangerous for me if I fall.

Last time I tried to take them upstairs in the shower (winter) did not work out real well. Seeing we only had a working shower faucet that was not the kind you can take off the wall and spray around, I had to lift each dog onto their hind legs to rinse off their belly and chest area. Needless to say I was pretty bruised up the next day (especially my feet from being stepped on).

On Sundays and Mondays is a special deal and they clip the nails and brush their teeth too. I was thinking in the summer I would try to wash them myself outside but they like being washed at the pet store and the dogs never let me brush their teeth anyhow. Thus I determined for the convenience, the included teeth brushing and nail clipping, the time and hassle I save, for my safety, and for such a great price I would continue to take them in and have them bathed.

Back to my bafflement......when I returned to pick them up the ladies communicated to me via paper and pen. I make a habit of bringing writing pads with me when I go places. They are ALWAYS nice to me but clearly I may well be the first deaf client they have had. While one lady was busy grooming (trimming) a small dog, the other girl working there would write to me what she was saying or asking.

The girl wrote to me "Can you drive?". I was not sure if I understood the question correctly. There was a pause in my response which I am sure was awkward for them. During that time I was confused why they would ask me such a question. I thought back in my brain "Did I tell them I have NF2 and that yes I was sick sometimes and I could not drive". No I don't remember telling them that. So then I dug deeper into my memory and recalled that I told them about my balance problem and that is why I took the dogs in to have them washed. But why would that prohibit me from driving? Then I thought that I must be having a really off day and maybe I am stumbling around as if I am drunk! What a horrid thought! I was thinking how in the heck did they think I got the dogs there. Maybe they thought I walked them but I had mentioned when I came in that I was a few minutes late due to all the road construction on Redmond/Fall City road. Gosh I must be stumbling around and they think something is wrong with me!!!!!

In all these scenarios I schemed up in my head, I NEVER thought the question was posed because I am deaf. In the two years I have been deaf and the 4 years prior to that when my hearing digressed and I was HOH (hard of hearing), the question has never been asked.

After my pause and look of confusion I questioned "Yeah. Why wouldn't I be able to drive?" Uncomfortably the other girl translated on paper that the other woman thought I could not drive because of my hearing. Shocked and taken by surprise (I really was not prepared for this kind of question) I defensively retorted "It is not illegal you know!". I have to admit that my protective wall immediately went up and proactivity was on its way out the window.

I imagine that my facial expression exhibited the feeling of being offended. I just was not sure how to react. Perhaps they read my face and questioning look of "WTF?" and so the woman went on to inquire what she meant was how do I hear sirens or know that a cop is behind me. My response was "How is it any different than someone blaring their car stereo and cannot hear the sirens?" I then realized this was an innocent inquiry and not an attack on deafness. Therefore it was my responsibility to educate. I informed them that my world is very visual and while driving everything is visual so we SEE the lights instead of hearing them. I think maybe this bit of information hit home as they informed me it was something they were just wondering about it.

Later I had an instant messenger conversation with one of my good friends who also has NF2. He has been deaf for 8 years and lives in a much bigger city than I do. Interestingly he informed me that he has been asked this question countless times. He even feared he would loose his driver's license once he became deaf. I don't recall ever thinking about losing my license due to deafness.

He also went on to tell me that a study implemented found deaf drivers to be safer drivers because they were more cautious and visually in tune to their surroundings.
(Click the link in the post title above to find out how deaf people get along without sound)

Contrary to popular belief, "Deaf people are among the best drivers."
"Deaf people make better drivers than people with normal hearing -- and they could be the world's safest motorists, a fascinating new study shows. "That's because they compensate for their disability by concentrating on watching the road, the research showed. "'They've got it all over us hearing people when it comes to driving," said a spokesman for the National Association of Driver Educators for the Disabled. "'They've always taken in everything with their eyes and as a result they tend to see everything when they're at the wheel." "And not being able to hear ambulance and other emergency sirens doesn't make deaf drivers unsafe at all. The study found that deaf drivers check their rear view mirrors frequently and can tell immediately if they should pull to the side of the road." -- Weekly World News, Lantaria, FL, April 25, 1995.


The things you may have never thought of!

Holy Heat Wave!

WOW! It is unusually hot here! This morning practice was fortunately early enough before it became TOO HOT! I walked 4.81 miles in an hour and 10 minutes. For the first time through my training I carried water with me AND drank it!

This morning I checked the forecast to know what I should wear. It had said that it was already in the 70s before 8 am and the high was to be 90 degrees. I just checked the thermometer hanging in the kitchen window and it looks like they were correct. It is so hot that it is hard to breath and I keep napping since I got home. I just cannot seem to stay awake in this heat.

I am sitting here right now with a cold gel pack (for a sports injury) on my head. No I did not injure my head fortunately but it is the only method I can use to stay alert. It is hard to think of what I am doing and it feels like my brain is frying! Since this in an insanely bizarre occurrence, we don't have AC because we don't need it. The NW must definitely be setting some kind of heat record here. Here is the weather forecast for the town nearest to us: http://weather.yahoo.com/forecast/USWA0059.html

Yesterday was worse! By 11:30 am it was 89 degrees and the truck temp read 106 degrees at 4:30 in the afternoon. I waited until the evening hoping it would cool so I could take the dogs for a walk. Never happened. I was supposed to also go to an ASL social but the heat made me fall asleep when I lied down to rest my eyes for a few moments. Fortunately yesterday was a day of rest on my training schedule. I am really hoping it cools down tonight so I can take the dogs for a walk.

Keep cool!

Us Now - Anniversary Photos

When we were married we made a decision to travel every year as that is one of the things that we like to do and is really important to us. This year for the first time we went on a cruise with friends. They had invited us almost a year ago and I was a little hesitant to make plans so far in advance given the situation. In my mind I wondered if the trip could be sold if something happened to me, if someone could accompany Harley in my place, or if he would even go if I was not here or could not go with him.

Well I made it to the trip and we had a fabulous time! I will include more photos when we get them from our friends. It was the first time I have been swimming in the ocean since treatment. We went snorkeling in Labadee Haiti, Ochos Rios Jamaica, and Grand Cayman. I literally did not want to get out of the water!!!

We never had an engagement photo taken of us. On the boat they took SEVERAL photos of us. The one with the sunset is from the first formal dinner night. The one on the right is from when we just got off the ferry in Playa Del Carmen, Mexico to visit the Mayan Ruins. The center photo we purposely had taken. They had a free photo sitting on casual night and we thought "What the hay! Let's try it out!" Unlike the other pictures, the photographer for this last sitting takes a little bit more time and sets you up into a pose. There were a couple shots of us and this was our favorite. Thus this is our anniversary photo to make up for the engagement photo we never had.

Six Years Ago Today July 16th

This summary is not available. Please click here to view the post.

Lattice Face - A Continuation of 2 Years Ago Today

Photos of me after my cyberknife treatment sessions on July 14, 15, and 16 of 2004.

The above photos of me were taken after the cyberknife treatments. The mask is so form fitting and tight that lattice marks formed on my forehead temporarily. However, the mask was not uncomfortable. Before my first treatment they made a mold of my face using the blue mask you see pictured in the prior post. Many people who have had the treatment describe making the mask as a similiar feeling to getting a facial. I would not know as I never had a facial done before. What I can tell you is that it was warm and wet as if somebody was applying a polymer type of wash cloth to my face. Because the mask has holes, I was able to breath out of it freely.

Soon the mask dries into the uniform shape of your face and is no longer flexible and soft like silly puddy. The best analogy I can think of for it is when people make those egg shape crafts out of big balloons. You know the kind where you stick string in glue and then run it all over the balloon so you end up with a delicate looking egg shape that has hardened? Well I guess it is kind of like that.

I did not experience any pain during the treatment except for the weight of my head/skull being pressed upon the small pillow for so long. I have no idea what the time frame was as I was cut off from the world both visually and auditorially for 30 minutes. I estimate it started giving me a problem within 15 to 20 minutes as when I reached the point where I thought I could no longer stand it, the treatment was over and they were removing the mask. What would happen is that it felt like the back of my head was burning up or on fire! It has also happened to me since then in longer MRIs. It is caused from not moving the head and the weight of the head pressing on one spot. I was given a soft pillow pad under my head but if you have a sensitive scalp it does not matter.

I can't remember if it was the first or second treatment but at one point I was lying there alone in the darkness and quiet thinking about the radiation beams going into my brain. I had a horrid sensation that this was beyond my control and the beams of radiation were like little bugs scurrying randomly and sporatically around in my skull. I was terrified to move even the slightest hair for fear that the radiation bugs would burrow into a wrong part of my brain. It is a weird thing to hand your brain over willingly and know that once it has started there is no turning back. An organ is one thing but your brain is.....well heck it is your brain!

There was an intense amount of radiation delivered to my brain (20 gray/rads each treatment) but the dose was dispersed among several entry points of my skull so that the full 20 rads was delivered to a precise location within a mm of accuracy (the tumor or as one of my friend's had described it "one of the evil twins".......my description "brain moles"). Therefore the rest of my healthy brain tissue was subject to minimal doses. But still, the thought of cooking your brain can be a little unsettling. Yet in my personal opinion still ......It sure beats having your skull cracked open and disected apart (open brain surgery). It is no secret that I have and still do dread and fear brain surgery.

Afterward I was given a steroid pill (decadron) and advised to drink lots of water. The treatment dehydrates you some (hence the markings on my face and the dimples which are greater than what they are now even though I have lost weight).

When I went into the open sun it was like a bolt of lightening struck my eye sockets and head. I had a massive migrane which I thought was from forgetting my sunglasses. On the first day I had to stop at Kmart in Santa Cruz and buy some. I think I was also very cranky and impatient.

I also got incredibly nauseated and asked for antinausea medication on the 3rd day of treatment. The first day I felt pretty crappy on the drive to Santa Cruz but felt better after getting into the water. On the second day our friends KC and Dianne joined us. When we drove to San Francisco I literally did not think I was going to make it there. The short half hour drive was unbearable and we had to stop by the water overlooking the Golden Gate Bridge so I could get some air. It was actually rather cold but I was so sick that the cold air is the only thing that gave me some relief. I stood out there in my shorts for a long time until I had the chills. I have no idea how long it was but we watched the sunset (what I could concentrate on of it).

Take a look at the link for a small slide show of a few photos I have. The one of me standing in the tree is when I still had my balance and could freely climb a tree. I can no longer do so unless someone helps me in or out or there is some easy safe way for me to do so.

http://pg.photos.yahoo.com/ph/bluediverbeck/album?.dir=/815fscd&.src=ph&.tok=phlAIMFB4MOkNAda

Two Years Ago Today

Picture: Larry (the cyberknife radiosurgery technician) fitting me for the mask which holds my head in place. The mask firmly attaches my head to the table so that no movement can be made while the robotic arm whirls around my brain using 3D image mapping to zap beams of radiation through my skull (calculated via physics) so that delivery is to the target area only.

Two years ago today:

• I was in California at Stanford University Medical Center.
• I visited Santa Cruz California and enjoyed body surfing and boogie boarding one last time.
• I splashed into the waves of the ocean with complete freedom for the last time.
• My mom hugged me as if saying goodbye. Giddily I scoffed saying "Geez mom I will be right back." I just did not know that life as I knew it was coming to closure, she was hugging the old me goodbye, and that a new me was about to be reborn.
• I did not know the extent to which my life was about to change.
• Beyond my control I surrendered into a realm of no sound or sight for 30 minutes. It is one thing to live without sound but not having either for 30 minutes can seem like a long time and be almost unbearable. It is a challenge to keep thoughts positive and keep the brain mentally sharp and productive during that time.
• I made the most difficult decision of my life. I handed my the essence of my life into the hands of a team of strangers. I surrendered my brain finally into the care of people who I had just met. I let it go and I let God.

Slip Sliding Away....A Hard Lesson

Remember that song from oh I don't know the 70s or 80s?

When I was a kid I remember my mother was singing that song while we were hiking along a river bank and well...yeah she started slipping sliding away in the the mud! LOL I have learned now that this is no joke!!!

Back in June I had a deadline to get out my fundraising letters for the upcoming marathon. Well if you know me you know that I am not a fast writer like my sister (who happens to be a TV journalist and reporter). It actually takes me a long time to think of what I am going to write, to start it, and then once it is written I take a long time tweaking it. In addition, it is very difficult for me to handwrite something (thanks NF2) and I had to hand address 50 letters! It took FOREVER!!!!!!!

Anyhow, as a result I stayed up through the night. When I am more tired or just wake up my balance is HORRIBLE!!!! I can't even remember now but as I was walking down the carpeted stairs of my home in the early morning of June 15th I literally SLIP SLIDED AWAY! Perhaps I was too tired to catch myself on the railing like I normally do or maybe my legs just gave out. I really can't remember. Yet, I DO recall landing on my tailbone HARD....like scary hard!

I have never fallen quite that hard before and I was in pain sleeping. I could not lie on my back and to turn either way in bed sent sharp pain spasms through my lower pelvis area. In addition, it hurt to bend or sit which reminded me of the sensation I experienced immediately following a bone marrow draw.

I still went to practice that evening but was rather stiff. Fortunately a teammate was interested in communicating with me and learning some sign so I was able to walk slower. I think I took friday off as we left to visit my parents. Saturday the 17th it was not getting any better and I had a hard time keeping up with my dad and Harley on our walk with the dogs. Still in pain on Sunday (father's day), I was still committed to walking the dogs and I could keep up with my dad and Harley that day.

On Monday I went into the Urgent Care center for xrays as I began to have a deep seated fear that I may have damaged myself seriously and that I better get the scoop before I do something irreversible on our upcoming vacation. FORTUNATELY nothing was broken or fractured!!!!!! I just had an extreme bruise of the coccyx which takes weeks to heal.

The doctor at the center was going to prescribe pain medication but I already take a medication that makes me drowsy enough. I did not feel like spending my entire vacation in a lethargic or catonic state. Therefore, I requested some celebrex which helped greatly when I took the medication but I am still sore.

This thursday will be 3 weeks since the incident and although I have been practicing for the marathon and I do not experience sharp shooting pains, I am still sore. I only have 2 celebrex left and I am clearly going to need to get some more as I have not completely healed yet.

For those who have been around me over the past year, now you know why it is terrifying going down the stairs for me (especially if the stairs are concrete!!). Today I had a jolt of fear run through my spine as I again nearly slipped going down the stairs! Luckily I was able to catch myself and prevent the fall by bracing myself with my arms between the wall and handrailing. My stomach dropped at the moment as if I had near head on collision with an automobile. That is how scary falls can become when you are balance challenged and hurt yourself.

For this reason, when I go down the stairs I exercise great caution and probably look like an elderly person. In my house however, I get a little too comfortable running around in my bare feet. I used to be a person who would run up and down the stairs so it is hard to not forget what I could do before and want to jump back into my old skin (self).

Relay for Life Photo Slideshow

MY EARLIER MESSAGE: HELP! I can't remember how to create a slideshow to share with you. I have all the photos from the Relay for Life event but I can't recall how to set up a slideshow so I do not have to post one at a time.

Someone who is really savy at blogging and photos please send me your advice under comments.

Thanks to my old friend Jeff Lozon from back at NMU, I was able to figure out how to setup a slideshow again. Jeff if you read this you may be baffled. For some reason I got an invite from you to yahoo photos 360 but you don't have any photos. Anyhow, by going to the link and dinking around in there, I was able to find my previous albums and that of my sister's and brother's. Fortunately I was also able to figure out how to add new photos and create new albums and slideshows. So thanks buddy! :o)

Ok I am creating the slideshow right now. There are lots of photos so I might not be able to finish tonight and tomorrow is my anniversary. I will post what I can and add more later in the week.

Please take time to look at my fantastic group of friends who comprised our team. I will add their names to the photos and descriptions later in the week also.

Note: We are all decked out with tropical shirts, flower lais, grass skirts, boogie boards, and palm trees as our team name and theme was "Guilligan's Cancer Free Island". LOL The palm trees got knocked over from the wind so I kept joking around that we had a hurricane on our island. We really had a great time!

Thanks Diana for your camera to take the pictures and for my teammates who joined in the fun and cause with me: Diana, Laura, Yumi, Kristy, Melody, and George. Special thanks to Laura's children Cody and Destiny who also helped us out and were a part of the team. Unfortunately we did not get any pictures of them in the great shirts Laura had made for them. The shirts have the names of all their family members who have gone through cancer and it is written in honor of them.

Cody is 13 and Destiny is 8. I was completely touched by their dedication and participation in this event. On Saturday May 20th Cody walked 10 miles in memory of his grandfather who had recently passed away. In addition, Destiny made me a very special luminaria candle bag (which I have kept) in honor of my battle with cancer.

It was the dedication and commitment of all these great friends who made the essence of our team. Their positive charm and character encouraged everyone there and we were recognized for the best team spirit. I thank you all for making it such a memorable event!

GREAT NEWS!!!!!!!

I did not have a chance to write about it but a week ago friday my doctor emailed me back with fantastic news! My bones look great first of all and have not become brittle or damaged by the long course of steroids I took from July 2004-April 2005. YEAH!

The other great news is that my blood work came back looking great. My blood chemistry is back in the normal range for the most part which means I am still in remission and the Hodgkin's Lymphoma has not returned. I am a bit iron deficient which may be from the nose bleeds I was experiencing. I have been taking a supplement and trying to consume things with a higher iron content. I have been recommended to take a "slow release" iron supplement (an overdose of iron is not good for you either) and will get another blood test in 8 weeks.

I also had my thyroid checked as the condition runs in my genetics. I do get tested for it often and for now I seem to be free of the condition.

The news lifted my spirits and made for a great weekend. My mind was put at ease about that worry so that I could focus on my mission ahead: training for the marathon.

Hope you all are having a nice weekend! :o)

Still Here!!!!!

Hey TJ and anyone else reading!

I am still around. I have just been really busy since the Relay event. The Relay for Life went very well! We had a fantastic team! I was waiting to write about it until I got the digital photos from a friend.

After Relay I had a job meeting about possibly teaching online (telecommuting from home) in the future, 2 doctor appointments, a bathroom remodel project in which I am responsible for the painting scheme (which is proving to be more difficult to do now with my imbalance, uncoordinated hands, and lower tolerance for patience), and finally my Team in Training practice started this week in which I will walk a marathon in November to benefit the Leukimia and Lymphoma Society.

I did find out last week that my blood test in April revealed I am slightly anemic which caused a little bit of anxiety for a few days. My Hodgkin's disease began with a slight anemia and my grandfather is currently battling a blood cancer. Therefore, any type of abnormal readings make me a little uneasy. Once you have had cancer, the thought of recurrance is always in the back of your mind.

I have had some wounds that have healed nicely though so that is a good sign. After 3 pokes at the blood lab for another test, they were able to draw enough out of me for a more updated CBC (Complete Blood Count). I am anxiously awaiting those results this week along with the results of a bone density scan I had done on Tuesday.

I wrote a post yesterday morning but saved it as a draft and never published it. It was about my reflection of doing the Relay that occured to me when I saw a cancer patient at the medical center on Tuesday. I am happy and feel that I am doing good things. My life keeps me busy and I always strive to get the most out of it.

Okay. I need to get to bed as I have a big day tomorrow with many tasks that must be done. Saturday I have a training session very early in the morning in Seattle and after my training I plan to meet up with my signing friends at the annual Deaf and Deaf Blind picnic in West Seattle.

Have a great weekend and TJ thanks for letting me know somebody is reading.

- Beck :o)

(UPDATED AND NEW) Quiet Relay Reflection

This is the draft post I wrote on May 31st and forgot to publish until today. (The information is from May but my reflection has become even more enhanced now that I am part of the Team In Training program to prepare for the Seattle Marathon in November. Friday I met two women in Team Survivor NW - one who had breast cancer and the other who had uterine cancer. They are both training for the Danskin Triathalon in August. Yesterday at team in training I met a man with hearing loss doing who has just been diagnosed with acute lymphocytic leukemia. He will be starting chemotherapy next month. He was a very fast walker and I told him to keep up the good work because it will be even more important when he goes through treatment.)


Yesterday I went to the Seattle Breast Center for a bone density scan.

NF2 Note: The reason we were assessing my bone density is because there have been cases of NF2 patients having premature osteoporosis (age 20s and 30s) due to long term use of steroids. Steroid therapy is commonly used to reduce tumor and/or brain swelling. Often steroids are prescribed following brain radiosugery or traditional surgery. Due to tumor swelling which caused problems and made me sick, I was put on steroid therapy several times (10-11) over the course of a year. I took mostly the steroid Decadron but was also given Predisone for a month or more.

The location of where I had the scan is the same building where the radiology and oncology unit is housed and the NW Tumor Institute. I regularily go there to see my radiologist for followup visits after each MRI. At the same place also where they administer chemotherapy and radiation treatments to cancer patients.

While leaving the building a woman who had or is obviously going through cancer treatment was walking in front of me. She was easily recognized by her lack of hair. Even though I never lost my hair completely (due to an ice cap I wore to freeze the hair follicles), I was taken back to what it was like to go through the horor of cancer. I remember crying over the thought of losing my hair but fortunately for me I had an option. Not everyone does and for a woman you can only begin to fathom what the loss of hair does to one's self esteem and identity.

In any case, this is not about hair. Seeing her reminded me of what I went through and what many with cancer go through. I felt for her, not pity but empathy.

As we reached the sunlight at the door pouring in from outside I noticed more detail about her. She must have been a mother as it seemed she had a young daughter with her and a husband or friend. She was wearing a nice ensemble of capri pants with a floral border at the bottom. As the sun glistened upon her I saw the beauty of life within her. She turned and gave me an angelic smile as we opened the door.

At that moment I felt proud and a warm satisfaction inside. Seeing her was like the difference between seeing a scenic photograph and actually going to the place and experiencing it first hand. Doing the Relay for Life was a good experience for me but seeing someone in live flesh and blood surviving and going through treatment made it more real. Knowing what treatment is like and how it can make one feel, I would dare to say that she was having a good day or was close to or finished with treatment. I saw in her the sparkle of hope that Relay represents.

At that moment I felt a presence greater than myself. I will never know the people who contributed to help keep me alive and give me hope. Likewise they will never know me but their belief in giving people such as myself will live on. My team and all the people at all the Relays around the world may never see who they helped but their efforts and faith make a profound difference in the world.

If I had not done the Relay, invited others to participate with me and contribute to the cause, and if there were not people who establish events like the Relay, that lady and others like her may not be alive, may not be a mother, a friend, a wife, a sister, a daughter, a relative, and would not have the opportunity to do what she was meant to do in her life.

On my mind at the moment

"If not me, then who? If not now, then when?"

- more later on what this means (or you can click the post title to view the link for a hint)

Guilligan's Cancer Free Island - Here is the Relay Team

This Saturday through Sunday a team of friends and I will be walking/running/jogging around a track at a local high school throughout the night to raise money and awareness for cancer and to also honor all who have been inflicted with the disease.

We are pretty excited. At this time there are 7 of us (including me). I will chronologically list how I came to have the fantastic opportunity to form friendships with all of them.

Yumi, my hiking partner and friend, I naturally met on a mountain top. OOOH I just loved to hike! Being on top of a mountain top was my sanctuary and my insides ached if a nice weekend day went by without taking the opportunity to be on a trail. When I turned 30, Harley got me our dogs (a very loving gift at that) and I would trek with them frequently to the top of Tiger Mountain overlooking Seattle and all of Puget Sound.
Back when I still had some hearing, I never wore my hearing aide on the trail because I would sweat too much. While taking a water break and admiring the late afternoon view, a woman came up to me and tried to communicate. Normally, in that situation people would walk away but this person was more persistent. I did have my aide with me in my pack and we chatted some before she wrote her name and number on a receipt from inside her wallet. Ever since then we have been friends and enjoyed many hikes together (one where we even got lost and had to run out of the woods and ended up in a nearby town!).
Yumi and her husband Dan have also joined me in the NF Challenge in the 3 years that I participated. It is a walking/running event held in Redmond, Washington to raise funding for Neurofibromatosis research towards finding a cure.
Yumi is also taking a glacial climbing class currently and will actually be in the Cascade Mountains the day after the event to practice self arrest skills on ice.
Recently, Yumi and her sister made a trip to Japan and Malaysia to care for her father who is battling lung cancer. We wish him well!

Melody is the second team member I came to know when I started to learn sign language again. After completing my graduate degree and for all practical purposes becoming "audiometrically deaf", it was apparent that the large growth spurt of the tumor on the side of my residual hearing was going to mostly likely leave me in a life of silence. Harley and I took a class at the Hearing Speech and Deafness Center (HSDC) in Seattle with some friends and one of my real time captioners. It was there that we met Melody.
When the class ended I transfered over to the community college and did not meet up with Melody again until we ran into each other at the Bellevue Community College ASL coffee night. At the time (in February of 2005), I had found an online a group of people interesting in sign language but I had not gone to a meeting yet as I was having trouble driving at night. Low and behold, Melody and I discovered that we did not live that far from each other! Thus she graciously offered to pick me up and bring me to the ASL meetups! How could I be so fortunate?
Melody will be leaving us soon and we are all pretty sad but also happy for her at the same time. She has been accepted by Western Oregon University in their Interpreter Training Program. For those who don't know what that means, she will become an American Sign Language Interpreter of the Deaf.

Ok, now we back track a little. After attending the HSDC, I transfered and took ASL II at Bellevue Community College. It was there that I became friends with Kristy. Of all the students there, she was the most interested in SINCERELY getting to know me. We would have good conversations before class, after, and during break using sign. Bless her heart! She really helped me out through that class as I took the class in the summer and that is when I went for treatm
ent. She diligently took very good notes for me and even typed them up! When I got back I was kind of sick and lethargic. Some days it was hard to concentrate but
Kristy was there for me.
Kristy also knows many other languages including Japanese. She is afflicted with a very rare blood disorder called porphyria. Sometimes it makes her very tired and sick but I always see her with a sunny smile on her face and a cheery disposition. http://www.porphyriafoundation.com/about_por/index.html

It is hard to remember exactly, but during the fall of 2004 I took both ASL III at BCC and ASL IV at SCCC at the same time. On a night when the classes did not conflict, I had a chance to attend a Silent Voices Club ASL games event. It was there that I first met George and learned that he LOVES to snowboard.
George is one of our Deaf friends who is really patient with us all learning ASL. George moved from the Philippines where he was born. There, he learned Filipino sign language which is different from American Sign Language. Thus, when his family moved here, he and his brother (who is also deaf from birth) had to go through the same classes we have gone through to learn American Sign Language. So actually, George is Tri-lingual (knows two sign languages plus English).
George works at the Fred Hutchinson Cancer Center in Seattle which is an important organization that conducts research and develops new treatments to fight cancer. George and I also share a love of Thai and Indian food. :o)

Okay now we will skip ahead back to where I left off with Melody. I met Laura through Melody that same night she and I reconnected again (at the Bellevue Coffee Night). They were in the same ASL class and we all started going to the ASL meetup together. I would ride with Melody from out where we lived and then we would meet Laura in Redmond and ride together from her house.
If you read back in my blog to last June, the 3 of us went to an annual Deaf community picnic. Melody drove. At the picnic I was still not well and my balance was just horrible. I staggered from tree to tree trying to support myself and by the reaction of some, they must have thought I was drunk. After eating the three of us walked down to the beach and I literally just lost it sitting on a log watching everyone play in the water and on the driftwood. All I could think of was how I used to rollerblade on the path, run on the cliffside trail, scuba dive in the water and walk over the rocks and wood with all my equipment, and just generally walk along the shore with ease.
I became totally depressed and hit with the reality that all of that was gone. I was totally traumatized at that moment and broke down. I tried to withhold my emotion but it was uncontrollable. I can't produce tears so I was kind of hyperventilating and it became extremely hard to breath. Melody and Laura immediately came to my side to calm me. LOL Then the strangest thing happened, like a magician pulling a rabbit out of a hat Laura whipped out some sort of tool out of her purse. She picked up a piece of driftwood and began to carve away until she has created a sailboat with record speed. Like a toddler, I calmed down and sat dumbfounded and amazed! As you can tell, she is a mother and a fantastic one at that to two beautiful children: Cody, an aspiring 13 yr old football player and Destiny, a 9 year old accomplished writer and budding artist.
Laura has the energy of a marathon mother. Not only is she a single mom, but she also works, attends the University of Washington fulltime (studies anthropology), is taking the final ASL level 6 class at Seattle Central Community college to obtain a minor in Deaf studies, is a caregiver for her children's grandmother who is battling cancer, but also found time to join our team in walking in the Relay and has done an amazing job raising funds.

Diana, I met through our sign language meetup group. She is the co-organizer and also attends many Deaf and ASL functions in Seattle and on the east side where we reside. Diana will be soon leaving us too and transfering to the same school that Melody will be attending (Western Oregon University). She is very interested in becoming a teacher of Deaf children and I think she will be a wonderful one! For being much younger than the rest of us, Diana has a rare gift of learning empathy at an early age. She is very in tune to the needs of others and has a profound understanding that would make her an excellent educator.
She is also a very dependable friend. We have gotten to know each other more as we were in the same ASL class last quarter. Over spring break I went to visit my grandpa who is battling cancer. Not only was I taking the train for the first time but I was also traveling alone for the first time as a deaf person. I was very worried about communication obstacles with the train agents, getting the wrong information, and missing the train. Thanks to Diana, I was able to get on the right train at the right time and she was there to bring me home on my return trip. If she had not brought me to the station and came in with me, I most likely would have gone to the wrong place or missed the train. Communication is really harry when people are unwilling to understand that you are deaf, need assitance due to balance, and are unwilling to take the steps (such as writing more specific information about where and when to get on the train) to help you get where you are going.
Diana has also been a God Send with giving me rides home after MY (not hers; she has a different one in the morning) ASL class (due to lack of a car from recent mechanical problems) and to ASL events at night (when it is more difficult to drive). She will also be greatly missed by my team and I.

Last I will mention Josh who is a real sweety. I also met him through our ASL meetup. He has been helping us spread the word and Laura with her donations. Josh put it many hours last year at the Redmond Relay. He is the only person out of all of us who has done a Relay event before. This year he can't walk with us because his senior prom is the same day. However, he is strongly with us in spirit. Josh is a hard of hearing student in the running start program. What that means is that in his last two years of high school he takes classes at the community college for credit. Thus, by the time he graduates high school, he will have either an associates degree in liberal studies or his two years of liberal classes required for a 4 year degree. Josh has been taking ASL at Bellevue Community College and is a member of their ASL club "Silent Voices". He is also smart with computers and has a side business with a friend and is an avid soccer player.

And there you have it........Our fantastic team!!!!!

I am very blessed to know them and have their friendship and support. I can't thank them enough and I keep asking myself and God how I got so lucky. :o)

CONTRIBUTION QUOTE

Here is a quote I will leave you with that leads me into my next blog post that I will write later:

"Everyone who receives the protection of society owes a return for the benefit."

- John Stuart Mill

HOLY CHARLIE HORSE!

I was rudely awaken this morning by a sharp jab in my lower calf muscle (can't remember which one). I had to keep stretching and grab the foot before I could get out of the bed to stand up. Yeah that is fine. That has happened (especially when I am on the Diamox and have not drunk enough fluids).

I made myself some oatmeal with raisins and a ripe banana boiled in(raisins and bananas are high in potassium and help to alleviate leg cramps). I had forgotten to take a potassium glucomate supplement and was planning to make a mango smoothie with the postassium rich yogurt I have.

However, I got lazy about committing to preparing it and forgot that I probably needed in and the supplement RIGHT AFTER THE LEG CRAMP OCCURANCE. As such, I was sitting at my computer just now and nailed by a whopper of a charlie horse. My calf muscle knotted up tight like a knotted rubberband pulled taut. This crap was disabling rendering my leg completely stiff. I had to sit on the floor to stretch it out as reaching down and grabbing my toe from my chair working to no avail.

The muscle is still sore when I get up and try to walk around. I guess I better start adding a regular stretching regimen to my day as well as that potassium supplement. I was all set to write a blog post about the Relay coming up this weekend but I think I better go make that mango smoothie and take a supplement.

Later, eh! Oh and HAPPY MOTHERS DAY to all the mothers out there (even the male mothers too)!

Weird Things Are Happening

As I told you in my previous post, I had to start taking a medication called Diamox again. If you have been reading my blog for sometime, you will recall that I started taking Diamox in January or February of 2005 (I gotta look that up as I should know if for my records). Anyhow, when I first began the medication I was also taking steroids so I would not have known the particular startup side effects other than fatigue and frequent urination.

I took the medicine for over a year and stopped mid-March. Then around Easter weekend I started to get some migranes and visual disturbances. In any case, I took the medicine on May 6th and 7th and then skipped the 8th in order for my doctor to see if there was any swelling on the morning of the 9th. Indeed there was so I started back up with 500 mg on the late evening of the 9th and ever since then.

So here is how it has been going:

I was really tired and yes I guess I will admit this, I started to piss my pants in my sleep on Wednesday morning. I was dreaming that I was at a restaurant and excused myself to go to the ladies room. When I dreamed I finished it seemed like I did not go. "Okay" I thought. "I will try to go again." This time however it felt all wrong and fortunately I woke up to realize what was happening. Therefore, I got up and went to the real bathroom and changed. That was about 9:30 am.

I went back to bed and awoke at 11:30 am. This time I could not get out of the damn bed. My right leg was numb and I could barely feel it! I had to twist around my foot, bend my knee, and work the leg until I had full feeling in it. Then I could stand up but I had to walk around to really get it working.

Thurday morning I awoke as a dang acne patch! I had a rash (like a heat rash) down the left side of my neck and spreading sparsely on my chest. Since then I have had welts develop all over my face.

Friday night after I took the medicine I looked like Rudolph the red nosed reindeer. SERIOUSLY!!! My nose became completely red in color as if it were sunburned.

I don't recall the specific days now (must have been Wednesday and Thursday), I tried to go for a run and I was completely exhausted and weak within minutes. I went for a run in a neighborhood near my house and I think I could only run for 5 minutes where I came upon the hiking trail. My lungs burned like fire and my legs felt like jello. Normally I can run on the easier parts of the trail but I felt all disoriented and my legs were really weak. I feared that with my disoriented vision and loss of leg strength that if I tripped I would not be able to catch myself. I worried that I could become badly hurt in the woods by myself.

Tonight will be sixth night taking the medicine so hopefully my body will become used to it again and some of these side effects will start to lessen. I really do want to do my run next weekend in the Relay so I hope my balance will be better.

Why am I awake right now? Training. lol the Relay for Life event is 22 hours. I will start with a cancer survivor lap at noon, my 3 mile run later in the early evening while it is still daylight, and walking in the evening when it is dark. I am bringing my tent there so that I can take naps.

Challenged by Faith

Yesterday I had another appointment with my neuro-ophthamalogist. For those who don't know and have NF2 or Acoustic Neuroma, a neuro-ophthamalogist will become a regular part of your medical care team. This type of doctor is not the same as an optomitrist or a regular ophthamalogist. A neuro-ophthamalogist is also board certified in neurology and has expertise in visual problems caused by brain tumors. An optomitrist is not trained to deal with the special concerns of NF2 and other brain tumor patients. They fit people for glasses and more pertinent matters and conditions are referred over to the ophthamalogists. However, most ophthamalogists are not familiar with vision problems caused by brain tumors and do not know what to look for. Therefore, it is important to find centers such as hospitals who have doctors who address these issues and also to look the board certifications of medical staff when choosing a doctor.

Alright blogger is acting kind of weird today. I started this post on Wednesday but never finished it. My appointment was on Tuesday May 9th. I have been having problems with my eyes where it felt like somebody unexpectedly lit a camera flash in my eyes temporarily blinding me. This was happening on a daily basis and seemed to occur when I was rising from a resting position (from lying down to sitting or from sitting to standing).

When it occured, I could not see and had to grab hold of something stationary for stability. Fortunately each episode did not last long. It seemed to dissipate in under a minute (within seconds). Basically when it happened, I had to stand there and wait for it to pass. I imagine if somebody was looking at me and noticed, it would appear that I had blanked (or spaced out) for a few seconds.

Here is the email I sent to my doctors on April 28th:

"My Major Concern: I am having visual disruptions where my field of vision is narrowed or blocked at periods of time. The effect is similar to the blinding one would experience after having a camera flash bulb go off in his/her eyes. This has been happening frequently (nearly everyday) since I started experiencing the headaches. I notice this occurs when I am rising from a sitting or resting position. The effects lasts for seconds and when it happens I need to grab something for bearing and stand there until I can see normally again. It seems to be more apparent in the right eye and I know my peripheral vision field is greatly decreased when this occurs.

I would feel much better having you look at my optic nerves now that I am off the Diamox and also administering another peripheral vision test to rule out possible swelling of the optic nerves again."

My neuro-ophthmalogist immediately responded and a sooner followup appointment was made. Seeing as I go to the UW Medical Eye Care Clinic which is also a teaching hospital, I am first seen by resident doctors. For the first time ever, I lost control and broke down once they left the room. There was nothing bad about the resident doctor and student, nor the captioner. She actually told me what I was expecting.....that my optic nerves were swelling again.

For whatever reason, it just all became too much and too overwhelming at the moment. I just totally let myself become disappointed. I wanted to believe that this was all going away and ending. I was tired of NF2 and did not want to deal with in anymore....NO MORE...IT TOOK ENOUGH!

When she told me the optic disk was swelling and that they needed to set up the periferal vision test, fear shivered my body. My thoughts were "Oh my God why is it swelling again? What if it does not stop? Will they have to open my head and do brain surgery afterall? Would I live? Would I become more messed up? Will I become blind?" It was a total snowball effect of fear and anxiety. The more I tried to suppress these feelings deep inside, the more it took over me and I could not control it.

Remember that I cannot cry. I lost the ability to form tears. I have not cried tears since probably October of 2004. I realy don't quite know how to explain what happens to me. I guess it is sort of a combination of the "trying not to cry but can't control it effect" coupled with hyperventilation and shaking. This episode was somewhat mild though. The poor captioner was a male and this was the first time I had him! He was the only one in the room with me and I think he asked me on three occassions if I was alright. I finally told him that I am not able to cry and sometimes I kind of hyperventilate. LOL I don't know if that offered him any relief. I crack up thinking about it now.

I did manage to calm down and maintain my composure by the time the medical staff entered the room again. I knew I had to stop shaking in order to take the test. Also, I knew I was starting to loose it and let my emotions get the best of me. I told myself that I walked through this thing with faith and that I had to trust it. I find this is often true of many things in general (that it does eventually work out but sometimes you are really run on the ringer or you feel like you are clinging to the edge).

Later the doctor came in and did agree that my optic nerves were swelling but it was a mild swelling (more of an increase on the side with the larger tumor). He instructed me to get back on the medicine again as it seems to be working in reducing the swelling.

I asked what were to happen if the swelling does not cease and if I would go blind. He said that there is always a risk that I could go blind but that it was unlikely. An option is to undergo surgery to reduce the pressure around the optic nerves but he did not think that it was something I needed at this time as the medicine seems to subdue the swelling and as of now it is mild. He did not know if and when the swelling will stop. I am a case where there just are not answers and he just did not know. It is simply a matter of hoping and praying...FAITH.

That afternoon I was a little down. I kept observing people and wondering about their lives. I have done this over the years when I have my moments. I watch people and wonder about their lives. I wonder if they realize how lucky they are to walk from point A to point B without even really having to think about it. Do they really know all the gifts they have? I contemplated their lives and my life. Does it even enter their minds that something like this could happen to them. Then I saw some people who looked like they could have been doctors. I wondered if there was anyone who was becoming a doctor or who was a doctor who became diagosed with NF2 or some other life altering or dehabilitating illness. Probably not NF2 or I or someone I know with NF2 would have heard about it. What would a doctor do if they found out they had NF2? What decisions would they make?

While distracted from my reading, I fell asleep in the sun on the flat black granite sculpture outside the hospital. When I awoke, I focused on the metal beam structures overhead. It was beautiful and I saw it in a way that I don't think I ever would had I not been in that position at that moment in time. It would have made a fantastic photo! I was amazed that I went to graduate school for 2 years at that University and had never even noticed the sculptures or place where I was sitting.

As the sun had changed position it became a little chilly on the side of the building where I was sitting. I decided to pay visit to the sun on the other side and sit in a park like area I had viewed from windows above but never took the time to visit. When I finally figured out how to get to the other side, there was a nice wooden arbor near some sculturesque built in the ground bird baths. It was all very artitically designed and the curves flowed from one structure to another. I found a nice place on the wood to sit in the sun and read.

After awhile I noticed that 4 birds had joined me at ground level (2 robins and 2 beautiful black birds with feathers that changed to purple, greem and brown in the sun....magpies?) The robins were a little shy and cautious. However, one of the black birds was a free spirit and did not seem to mind me at all. He (or she) came to edge of the water closest to me and took a bath in full splendor! It was an amazing site to watch the bird fully enjoying itself without minding me at all! The robins were still wary but did draw nearer. Soon the other black bird companion took part in the activity. I was completely glued and enjoyed watching them. I then thought to myself, had I not been in this moment and this time, I would have never witnessed this moment. Everyone else was busy scurrying about. It made me think about the many things I have had the opportunity to observe, reflect on, and enjoy, when I know I probably would not have the time to contemplate if none of this had ever happened to me.

Fantasy Physical Therapy

I know I should be going to bed and that I need to wake early for a followup/checkup with my neuro-opthamologist, but I wanted to jot this down before it leaves my mind. Actually I have a plethora of things to write about but I am rather occupied right now.

If the sky was the limit and I could arrange absolutely anything I wanted in a physical therapy program here is what I would design:

1. Treadmills to practice walking and running on a various speeds and inclines. In addition to the treadmill there would be a safety harness or bungee seat device to catch you if you trip, lose balance, and fall. There would be a second person (the therapist naturally) to operate the controls at your command. I found changing speeds and inclines is incredibly difficult at higher speeds if you are trying to hold on to both side bars of the treadmill to maintain balance and your eyes are jiggling around like crazy which inhibits reading the darn thing. Oh and of course the treadmill would be in a room the simulated the surroundings of the outdoors seeing as I can't hear (deaf) and I cannot read the captioning on a tv (due to oscillopsia).
2. The facility would include a pool of ankle to knee depth which simulates the swiftness and power of a current in a river. In addition, the underwater terrain would include uneven footing such as river rocks. The therapist would hold ones hand and have a safety rope to pull the person up if they fall over.
3. Of course there would be a regular swimming pool as well with lots of practice swimming with a mask and underwater as well as above. In depths of 4-5 feet the therapist would practice spotting the person with imbalance while the person shuts their eyes and tries adjusting to the orientation underwater and finding the surface with no mask. In addition, there would be practice learning to swim efficiently again and instruction and practice at treading water in depths exceeding 6 feet.
4. There would be a nice flat track for rollerblading. Walkers with wheels and brakes would be available and practice on how to rollerblade again.
5. An obstacle/hiking course would consist of uneven board walk about 3 feet in width which changes in 90 degree angles. Some boardwalk would be at ground level whereas some would be about 3 feet off the ground. A spotter is next to the physical therapy patient at all times in case of a fall or momentary loss of balance (those 90 degree turns are hard!!!!).
6. Curbs in a straight line surrounded by sand or some other soft material would be installed outside. The patient would practice walking on the curb in a straight path.
7. Paths of different materials (deep sand, rocks increasing in size to the size of large river rock) would be implemented. The person with imbalance would practice walking on these paths with poles, unaided and without a pack, with a pack and poles, and eventually with only a pack if possible. The pack size would change in weight as the person increased in strength and balance (starting at 10 pounds and possible increasing to 70 pounds).
8. There would be a nice hiking path with smaller hills and a moderate grade. Crushed gravel is nice but not always available in real life. There would also be various hills for practicing on going up and coming down (going down is very difficult!).
9. Stairs (heaven forbid they are scary). This would be a better indoor exercise if a harness can be attached. The idea is for the person to gain strength and practice going down stairs (going up is much better, much easier, and less fearful).
10. Remember those rooms fulls of balls that you can jump into when you were a kid? Or even those big air filled things that kids jump around inside. Well these would serve a two fold purpose. First, from what I remember about them, they were hard to walk and balance on but you did not hurt yourself when you fell. These would be great for helping people work out the muscles needed for balance. Also, it would be interesting to use it as a similator for getting up on water skiies. I used to LOVE waterskiing. However, I no longer have the balance to stand up. In the simulator, there could be a device to mimic the tow rope behind a boat. A person could sit on the ground and practice standing up with the tow rope. If the person falls over, there is nice cushioning available.

Okay, I know I have given lots of thought to this but these are the main ones I remember at the moment. I have quite the imagination, don't I? Well it is time to hit the hay! Have a good night!

Riding on the Train

I told you that I wanted to write about the train ride over spring break. It was VERY long! I don't know if it can completely be attributed to NF2 or just antsiness for anyone. I do know that if I do not exercise or walk for 2 days it becomes incredibly challenging to walk straight and maintain balance. For this reason, I need to walk almost daily for an hour or more.

While on the train (if traveling from the west coast to the midwest), walking is not an option. Anticipating this dilemma, I went for a run earlier in the day that my train departed. That still did not solve the problem as I had leg cramps in the middle of the night that knotted up my calves. Fortunately I had some potassium supplements with me so the cramps would not be so bad.

My advice: if you are taking a train for a long distance (longer than a day), get a roommette car. My dad and I did not get one (there were none available) and we had to sleep in our seats. If you thought flying to Europe was long, trying being confined to a train seat for 43 hours! Sleeping in a coach train seat is comparable to sleeping in a Chevy Silverado truck seat. You know how truck seats do not recline all the way back so you are still sitting upright the whole time but just at a little reclined angel.

Of course in this position I could not sleep more than a couple hours and kept waking up. I was actually kind of lucky actually! If the person in front of me had his/her seat reclined, my feet just touched back of that seat. My dad however, has much longer legs and could not stretch them out. I can't even imagine!

If the train was not too packed, you could sit alone and try to sleep in fetal position in two seats next to each other. Even in this position, I continued to get leg cramps.

The second day on the train (after only a night) I thought I was going to go mad! When the train made one of the very few stops where you could get off and stretch out, I jumped at every chance. Aside from the dang smokers billowing practically all breathable air on the outside of the train, it felt good to get off and at least feel the cooler air. In the 10 minutes or less that you are given, I took the opportunity to walk as much as I could the length of the train and back.

Back on the train my legs became very agitated from being in one position for so long. To stretch them out I would try walking the isle of the train which was not a simple task. Surprisingly, I found the train to be more turbulent (yeah it is a joke) than a plane! If it was really bumpy I bounced down the isle clutching each seat and nearly landing on top of seated passengers.

I think one man thought I came from the dining car and was drunk. He laughed at me and try to say something. I, of course could not hear him because I am deaf and told him so. He then motioned something having to do with my wobbling and balance, then laughed again. I told him I had poor balance due to brain tumors. I hope he felt like an ass after that.

Once on stable ground during my visit, I had to walk everyday in order to regain and maintain balance and prepare for the long ride again a week later. The trip back did not seem as bad. I figured out that I could read better either at the seat or at a table. At certain points the scenic car bounced around too much which made reading very difficult with Oscillopsia. If sitting in the seats facing the window in the scenic car, there was more bouncing making it impossible to read a book! The trick is to be facing either the front or the back of the train (same position as the seats you are assigned to). We grabbed a table in the scenic car that was next to the wall and door. This seat to be the most stable in the scenic car and the table offered more stability for reading.

Oh yeah, one more tip: If you have a roommette there is room to stretch out (like actually do some stretching). Also, it is very hard to maintain balance in the bathrooms. It is best to go down there when the train makes a stop and is still. Think of going in a bouncing honey bucket at opposed to a stable one. With balance disfuntion, it is hard enough (if you are a woman) to hover above a public toilet or outdoor john anyway. Boy I could tell you a slew about my bathroom balancing act adventures!

Swimming in the pool

A few weeks ago Harley and I went swimming at the gym pool one weekend. While I am not able to to swim laps quite fluently and to do the lap lane change (you know that summersault thing that turns you the other direct), I am quite comfortable in the water. I have to admit that I prefer to be swimming under the water with a mask and snorkel than on top of the water without.

It is hard to do the crawl stroke without a mask when there are other people in the pool. When there is a little wave action from other people it is very difficult to balance while standing or to swim straight. I also seem to sink more now than float and when I was trying to do the crawl I ended up swallowing lots of water. The turning of the head back and forth in the crawl stroke disorients me so I have to keep my head straight forward and to also use goggles because I can't close my eyes. If I were to close my eyes I would lose all orientation. In addition, I cannot create a tight seal on my right eye and I would get lots of chlorine in it.

I actually practiced kicking on a kick board and also swimming with a mask and snorkel with my head down. I just LOVE having a mask and snorkel. As long as I am wearing a mask, I can do 6 complete summersaults in one breath. Without a mask I cannot complete 0ne summersault and need assistance to find the surface. It seemed easier to find the surface on my own this time than last summer.

I still really love the water. When I was home a week ago I wanted to waterski again if the water was not so cold. I remember how to do all these things, my body just does not balance. I wondered if I could relearn it somehow and make my body waterski again. I always liked waterskiing over tubing. I have never been much of a tubing fan.

This was our first time in the pool for the year. The last time I was in the pool was on our trip to Arizona. I think we were in the pool 2 or 3 times that vacation (in October) and in the pool 3 times in August when we went to Canada. I am really hoping to go snorkeling in June when we go on our cruise. It would seem a sin to not snorkel in the caribbean! I would love to dive but I have not tried it out again yet. If I cannot dive, there are some tourist submarines to be had in Grand Cayman and Cozumel.