Yesterday Harley and I stopped in at 5th Dimension Scuba (http://www.fifthd.com/) to pick up his new double tanks that needed a visual inspection and fill. For those who don't know, 5th Dimension is affilated with GUE (Global Underwater Explorers) who I respect and admire as the "gods" of research diving and discovery. They literally go "where no man has gone before".
Displayed triumphantly on the walls of the dive store are the most amazing photos I have ever seen! Why? Because the photos are rare and were not easily acquired as it took the utmost discipline, training, physical endurance, and concentration to obtain them! The pictures paint the beautiful and glorious alien world of the Mexican underwater cave system. It is a place where I could only visit in my dreams or hopefully after I have leave this earth.
It may not sound like such a task to the lay person to dive there but cave diving is one of the most dangerous and risky of sports. One must be in extreme physical conditioning, be highly trained in technical diving in overhead environments, and have an incredible sense of focus and skill. In addition, many of the underwater caves in Mexico are not easily acessible (meaning one must hike through an inhospitable and humid landscape to find the entrance to the cave). I am not talking about a bathing suit, mask, and snorkel either.....not even a recreational set of dive gear such as one might use on a tropical vacation. I am talking about carrying 4 tanks or more in a full exposure suit and equipment that the average sport diver could not even imagine!
The GUE divers were the ones to film the underwater documentary of the Britannic (sister ship to the Titanic). http://www.gue.com/research/britannic/index.shtml
As Harley was speaking to the man working at the shop, I tried to carefully and casually walk around the shop in a manner which would not reveal my imbalance. Heaven forbid I did not want to show my defect here! With careful focus and concentration I managed to move among the racks of dive gear without tripping or bumping into anything.
The man knew I was deaf as Harley signed to me where the bathroom was. That did not bother me. Initially years ago when I started losing hearing I was very self conscious about revealing my hearing loss to other divers let alone the tech divers! Now I really did not care about the deafness but the imbalance instead. It is like my kayak story. I just really hate letting it show when surrounded by more able body people who are experts in their sport.
Everything seemed to be going rather smoothly until it was time to leave. There were three cylinders there (all steel tanks which are the heaviest). Two of them were for Harley's new double tank system and one was my old tank which weighs 41 pounds. Harley grabbed his two and then nodded to me to grab mine.
Again I was caught in a moment of panic! He wanted me to carry this 41 pound cylinder out to the car? How was I gracefully or safely going to manage this? Afterall, it has been a year and a half at least since I dove! I guess I did not think about the situation when I first entered the store. I was just so focused on maintaining my balance and looking normal. Well fudge! What to do, what to do?
I never looked back at the man working there and for some reason after I got over the initial few seconds of shock, bewilderment, and problem solving of how I was going to accomplish this feat, I instictively and bravely grabbed my tank. I remember for a brief second feeling kind of mad...like "Hey I have NF2 and I am all screwed up! How do you expect me to carry this tank?".
I think I took a deep breath as I grasped my tank with my right hand. I could not carry it as strongly and confidentally as I did before. In fact, when I was younger and when I worked at a dive shop, I would customarily carry aluminum 80 tanks up on my shoulder (you got understand.....it has kind of been a macho sport and for a long time it was very rare that a woman became a diver...50s-70s).
LOL I probably waddled like a penguin with my tank at my right side in an effort to counterweight my balance. It was not that far...maybe 15-20 feet to get out the door. Immediately outside the shop were 2 stone/brick/cement steps. I stopped there and contemplated what to do, I HATE going down steps that don't have a handrail! Plus I was carrying a potential bomb that could explode if dropped in a very unfortunate manner.
I stood there for awhile not quite sure what to do while Harley carried his tanks to the trunk of the car. Maybe I was hoping that he would come and get mine but I did not really feel like waiting either. I felt eyes upon the back of my head and wondered what the man in the shop was thinking. It is not uncommon for men to be diver's and their wives or significant others to not be (especially in the realm of tech diving!). Still it bothered me not to show that I was fully able.
I looked over to my left where it looked like it could possibly be all level and no stairs (a wheelchair acessible route) but I really was not sure. Plus it was a long way to go (3-4 times the distance as opposed to the 10 feet it would take to make it to the trunk). If I went around surely the man inside would wonder what the heck I was doing. LOL
Harley looked back at me. The door of the dive shop was open and the man was by himself. I have no idea if he was watching us or not. A little embarassed I said to Harley "It is a little harder now because of my balance." Then I had an idea. These steps were pretty low and flat. I decided to set the tank down on the one step and support it with my right hand and then step down with my body. I did that for the two steps and made it to the trunk of the car.
It felt great that I was able to bring my tank out to the car but if I had not been put in the situation I think I would have let Harley do it for me. I had not thought about it in a long time. While we were driving away, I chuckled at myself for being so self conscious and worrying about what the guy at the store thought.
If I am ever able to dive again I have lots of work to do. I have lost a great deal of strength in my upper body but it is slowly returning. There was a point when I could not carry a bag of dog food anymore. As a matter of fact, it took loads of energy just to slide it onto the bottom of my dang cart at one time! However, after taking the three tanks out of the car and carrying them the short distance to the garage, I was able to carry the dog food (a 40 lb bag) up the stairs of the deck and into the house. Both tasks drained me but I managed and got them done! :o)
Saturday, September 10, 2005
Sunday, September 04, 2005
Pressure Cooker Head
It is gone now but I had the pressure cooker head again today. The worst episode was before we went on our trip.
What is pressure cooker head? LOL Well that is the name I came up with to best describe it. Have you ever accidentally hammered your thumb or slammed it in a drawer? Now take away the pain the just focus on the pressure......that pulsating throb under your fingernail driving you nuts for some type of relief of the pressure built up inside.
Basically that is how a pressure cooker works. It heats up and the pressure builds inside the pot. On the old style cooker there is a relief nozzle at the top and the metal piece that sits upon it rattles and whistles when your food is ready. I remember my mom taking a dishrag and slightly lifting the round metal piece that rests on the nozzle. When she did this, the pressure was slowly released to the point that she could open the cooker without the food exploding all over her.
As far as my head, I don't really feel pain like hammering your thumb but I feel the pressure build as if my head were a pressure cooker pot. Only there is not a way to relieve the pressure.
The episode today was not so bad. I was busy doing things and able to focus. Generally pressure cooker head is accompanied by mild to severe tinnitus which can get extremely loud. For those who don't know, tinnitus is ringing of the ears which takes on different forms and sounds. I probably hear it all the time but my brain has now associated certain sounds from memory to it. For example, I often hear a radio with a DJ's voice, background talking, or songs of someone flipping through stations or playing several different radios and stations all at once.
When it gets very bad it is as though all these sounds or voices are happening or screaming and there is no way to shut it off and have peace. At the same time you feel the pressure in your head and ears throbbing but there is nothing you can do.....can't even cry. It can be quite agitating but all you can do is wait it out.
I have closely monitored what I eat, my sleep, and what I am doing but sometimes it seems there is nothing that triggers it. I hate when this happens because it freaks me out that the tumors are growing in my brain. I was assured from some doctors that I would not feel if they were growing. I don't know if I ever believed that. Something is happening in there and it drives my crazy not knowing what!
When I first went into remission for Hodgkin's Disease I freaked out everytime I had a chest pain. This lasted for a few years. I was told that what was left in my chest (between my heart and lung) was scar tissue. The combination of chemotherapy followed by radiation made my bronchials very weak. So as they strengthened I would experience these "chest pains" which were similiar to the ones I experienced before being diagnosed.
Therefore, I am really hoping that this "pressure cooker head" means that the tumor on the right is starting to collapse instead of swell again and that the others are stable. I had an MRI in July and the waiting for this next one is extremely hard for some reason. I recall wanting another MRI within 2 weeks of the last!
Hopefully things are looking good when I get the next MRI in October. Right now I feel like I did the first and only time I tried to do the "Austrailian" version of rapelling. I remember the pit in my stomach and anxiety building as I walked down the rock facing the ground. At one point there was no turning back as I stood perpendicular to the rock looking straight down at the ground 90 feet below. I recall thinking "Oh crap! I am committed now and have to see this through to get to the bottom!"
What is pressure cooker head? LOL Well that is the name I came up with to best describe it. Have you ever accidentally hammered your thumb or slammed it in a drawer? Now take away the pain the just focus on the pressure......that pulsating throb under your fingernail driving you nuts for some type of relief of the pressure built up inside.
Basically that is how a pressure cooker works. It heats up and the pressure builds inside the pot. On the old style cooker there is a relief nozzle at the top and the metal piece that sits upon it rattles and whistles when your food is ready. I remember my mom taking a dishrag and slightly lifting the round metal piece that rests on the nozzle. When she did this, the pressure was slowly released to the point that she could open the cooker without the food exploding all over her.
As far as my head, I don't really feel pain like hammering your thumb but I feel the pressure build as if my head were a pressure cooker pot. Only there is not a way to relieve the pressure.
The episode today was not so bad. I was busy doing things and able to focus. Generally pressure cooker head is accompanied by mild to severe tinnitus which can get extremely loud. For those who don't know, tinnitus is ringing of the ears which takes on different forms and sounds. I probably hear it all the time but my brain has now associated certain sounds from memory to it. For example, I often hear a radio with a DJ's voice, background talking, or songs of someone flipping through stations or playing several different radios and stations all at once.
When it gets very bad it is as though all these sounds or voices are happening or screaming and there is no way to shut it off and have peace. At the same time you feel the pressure in your head and ears throbbing but there is nothing you can do.....can't even cry. It can be quite agitating but all you can do is wait it out.
I have closely monitored what I eat, my sleep, and what I am doing but sometimes it seems there is nothing that triggers it. I hate when this happens because it freaks me out that the tumors are growing in my brain. I was assured from some doctors that I would not feel if they were growing. I don't know if I ever believed that. Something is happening in there and it drives my crazy not knowing what!
When I first went into remission for Hodgkin's Disease I freaked out everytime I had a chest pain. This lasted for a few years. I was told that what was left in my chest (between my heart and lung) was scar tissue. The combination of chemotherapy followed by radiation made my bronchials very weak. So as they strengthened I would experience these "chest pains" which were similiar to the ones I experienced before being diagnosed.
Therefore, I am really hoping that this "pressure cooker head" means that the tumor on the right is starting to collapse instead of swell again and that the others are stable. I had an MRI in July and the waiting for this next one is extremely hard for some reason. I recall wanting another MRI within 2 weeks of the last!
Hopefully things are looking good when I get the next MRI in October. Right now I feel like I did the first and only time I tried to do the "Austrailian" version of rapelling. I remember the pit in my stomach and anxiety building as I walked down the rock facing the ground. At one point there was no turning back as I stood perpendicular to the rock looking straight down at the ground 90 feet below. I recall thinking "Oh crap! I am committed now and have to see this through to get to the bottom!"
"So Happy Together!" - The Turtles
Katie and Jake were just overjoyed when we came home Thursday night! They ran to the truck to greet us and escorted us to the front door.
On Friday they waited for me to get up and as soon as I came down the stairs they were outside the sliding glass doors stretching and looking in the window. They could not wait for me to come out and play! If it were up to them they would play and spend their time with me 24/7.
That afternoon they followed me around and hung out with me as I watered and deadheaded all the flowers in pots on the deck and hanging baskets. When I finished we played some catch before going for our evening walk.
Yesterday evening we met Harley at our usual trail when he got off work. Again they were estatic to spend this time together on our walk. We stopped to pick blackberries and I think they enjoyed feasting on the berries even more than we did! They are like little bears! Well technically you could say they are because their father was named "Bear". :o)
LOL It was rather funny because I had a calling from nature during our berry picking and had to step off the trail into the side of some farmer's field. Harley stayed on the trail and continued to munch on the berries but the dogs followed me right down to where I had to go. Another time I had to tie my shoe lace so I handed Harley the leash and they kept looking back to see where I was. They did not want to leave me behind!
I firmly believe that pets enhance our quality of life and enjoyment of it!
On Friday they waited for me to get up and as soon as I came down the stairs they were outside the sliding glass doors stretching and looking in the window. They could not wait for me to come out and play! If it were up to them they would play and spend their time with me 24/7.
That afternoon they followed me around and hung out with me as I watered and deadheaded all the flowers in pots on the deck and hanging baskets. When I finished we played some catch before going for our evening walk.
Yesterday evening we met Harley at our usual trail when he got off work. Again they were estatic to spend this time together on our walk. We stopped to pick blackberries and I think they enjoyed feasting on the berries even more than we did! They are like little bears! Well technically you could say they are because their father was named "Bear". :o)
LOL It was rather funny because I had a calling from nature during our berry picking and had to step off the trail into the side of some farmer's field. Harley stayed on the trail and continued to munch on the berries but the dogs followed me right down to where I had to go. Another time I had to tie my shoe lace so I handed Harley the leash and they kept looking back to see where I was. They did not want to leave me behind!
I firmly believe that pets enhance our quality of life and enjoyment of it!
We're Ba...ck!
We got back Thursday evening but I have not had a chance to really write. In the midst of trying to unpack, put things away, cook some healthy menus, and clean the laundry, I have gotten involved in catching up on my email and reading and commenting on other blogs.
I am really behind on blogging. I need a data recorder like Captain Picard...one that I can plug into a computer and will type for me. I only write a tiny fraction of what I actually think about. By the time I get around to actually writing, there are so many things that have happened and a plethora of new thoughts the have entered my mind.
Therefore, until Harley downloads some of the photos to my computer I will just tell you about the highlight of our trip which was on the last day.
Our journey on Vancouver Island Brittish Columbia ended at the wonderful town of Nanaimo on the east side of the island. We arrived there on Wednesday and not only found this town picturesque but also more reasonably priced than the other places we had visited on the island. In addition, there are SEVERAL activities to do there!
Wednesday evening we enjoyed a nice walk along the waterfront and harbor which was fantastic for someone with balance issues. The trail is paved and flat so it can accommodate bikers, rollerbladers, wheelchairs, walkers, and dogs on a leash. Boats and seals as well as the historic part of town can be admired from this trail.
On Thursday morning we rented a double kayak from "The Kayak Shack" at the north end of the town and harbor (near Departure Bay and across from Newcastle Island). I was excited but a little nervous to reveal my issue. I try to not let it show. Deafness is one thing but I really have a fear of showing my imbalance when it involves a sport.
When it was time to put the boat in I had no choice.Walking down to the water and climbing into the boat I could manage if it was calm and the rocks were not too slippery. However, carrying the boat down to the water over the uneven terrain and rocks was another. It probably was only 15-20 feet but I knew myself and I did not want to end up dropping the boat and damaging it or falling over and seriously damaging myself.
When the lady motioned for us to carry the boat down I thought to myself in a panic "God I can no longer play this game of pretend! Crap! What do I do? Do I swallow my pride and admit my weakness thus asking for help or make an ass of myself and possibly ruin their boat?"
How does one adequately and tactfully tell someone what is going on or ask for help? This has happened to me on at least 3 other occasions that I can recall. One time, when I was at my weakest, I realized I was not going to be able to lift some soil into my truck at Home Depot. Never in my life has that ever happened. I mean I look fine, young, and strong but alas I knew from trying to slide the bags on the cart that I was never going to be able to lift them the 4-5 feet into the truck bed. Thus, sheepishly and somewhat embarassed I had to ask at the register for some help lifting them. What made it worse is that it was a woman who put the bags in the truck for me.
So returning to the kayaking, in a moment of desperation I blurted out "Ah, this may seem kind of silly but could you please put the boat in the water for me? I am recovering from a brain tumor and my balance is off right now." She was very nice about it and complied and assisted me when we returned.
Now to the adventure! It was phenonmenal! We felt as though we were on a National Geographic Expedition! In the kayak the oscillopsia wasn't too bad (oh yeah you don't know about that yet so sometime I will write a post about the meaning of the term). The water was very clear up there but probably poor visibility for the area due to the warmth of the water and plankton right now. To give you an idea, I could see about 15 feet down into the water and spotted several jellyfish and sea stars. In addition, it was low tide so we saw tons of red, purple, pink and orange sea stars clinging to the rocks with the sea lettuce, rock weed, and other algae (seaweed).
We paddled along the northern tip of Newcastle Island where we spotted several raccoons out for a shellfish harvest during the low tide. Many of them ran to hide among the large rock formations but a mother and her two young kept hunting along the shore, allowing us to view them as we floated by.
The plan was to paddle around Newcastle Island and go swimming on one of the sandy beaches but we were too enticed to kayak more north d toward some distant rock outcroppings in search of harbor seals. When we finally made it to the rock outcroppings I thought it was going to be a bust but Harley heard one and saw it sitting on a rock. He pointed it out to me just before it decided to go for a dip.
That was pretty cool but nothing compared to when we made it around the rock outcropping. First we saw a couple and then there was a huge herd playing in the water as if it were a community seal beach! There were probably around 50 seals! We kept our distance as required by law but they swam out and monitored us on our boat at a 20-40 foot distance. They were literally all around us and were swimming in the same direction that our boat was moving.
We drifted between the outcroppings and noticed a lone rock with beige, white, and gray humps on it. As we floated by this isle we discovered the rock was for the seal pups and a couple of adult seals kept watch of us in the water so that we did not pose a threat. For some reason there was one lowly pup left alone on another rock and we floated unknowingly within 15 feet of him.
The seals continued to swim with us until it was clear we were heading too far from the comfort of their rocks. We passed by a rock full of cormorants and other birds. Some of them took off like jets across the water (similiar in flight to canadian geese).
Mother nature called so we continued to head north up the main shore in search of a safe pullout. When we checked the time we had to head back as we had less than an hour to return the boat and catch the ferry back to the mainland.
The water was rough in the section back towards Departure Bay. What a ride! You have to head straight into the wave because if you hit a wave from the side the boat may tip. Gosh this was such a rush! The view and perspective from the front of the boat is intense! Again the oscillopsia did not bother me because my focus and concentration were on the front of the boat, the wave ahead, and paddling like the dickens!
As we paddled our hearts out a sailboat cruised by with full wind in its sails and leaning at its side. Basically they were having a good ride too as I am sure they had a few knots going!
The ferry from Horseshoe Bay on the mainland was in the distance so we had to hurry up to try to beat it while crossing the small channel. On our way in we saw a woman attending a zodiac for a slew of divers down under and we continued to see the float plains coming in and out.
Nanaimo made quite an impression on us so we will be back for more!
I am really behind on blogging. I need a data recorder like Captain Picard...one that I can plug into a computer and will type for me. I only write a tiny fraction of what I actually think about. By the time I get around to actually writing, there are so many things that have happened and a plethora of new thoughts the have entered my mind.
Therefore, until Harley downloads some of the photos to my computer I will just tell you about the highlight of our trip which was on the last day.
Our journey on Vancouver Island Brittish Columbia ended at the wonderful town of Nanaimo on the east side of the island. We arrived there on Wednesday and not only found this town picturesque but also more reasonably priced than the other places we had visited on the island. In addition, there are SEVERAL activities to do there!
Wednesday evening we enjoyed a nice walk along the waterfront and harbor which was fantastic for someone with balance issues. The trail is paved and flat so it can accommodate bikers, rollerbladers, wheelchairs, walkers, and dogs on a leash. Boats and seals as well as the historic part of town can be admired from this trail.
On Thursday morning we rented a double kayak from "The Kayak Shack" at the north end of the town and harbor (near Departure Bay and across from Newcastle Island). I was excited but a little nervous to reveal my issue. I try to not let it show. Deafness is one thing but I really have a fear of showing my imbalance when it involves a sport.
When it was time to put the boat in I had no choice.Walking down to the water and climbing into the boat I could manage if it was calm and the rocks were not too slippery. However, carrying the boat down to the water over the uneven terrain and rocks was another. It probably was only 15-20 feet but I knew myself and I did not want to end up dropping the boat and damaging it or falling over and seriously damaging myself.
When the lady motioned for us to carry the boat down I thought to myself in a panic "God I can no longer play this game of pretend! Crap! What do I do? Do I swallow my pride and admit my weakness thus asking for help or make an ass of myself and possibly ruin their boat?"
How does one adequately and tactfully tell someone what is going on or ask for help? This has happened to me on at least 3 other occasions that I can recall. One time, when I was at my weakest, I realized I was not going to be able to lift some soil into my truck at Home Depot. Never in my life has that ever happened. I mean I look fine, young, and strong but alas I knew from trying to slide the bags on the cart that I was never going to be able to lift them the 4-5 feet into the truck bed. Thus, sheepishly and somewhat embarassed I had to ask at the register for some help lifting them. What made it worse is that it was a woman who put the bags in the truck for me.
So returning to the kayaking, in a moment of desperation I blurted out "Ah, this may seem kind of silly but could you please put the boat in the water for me? I am recovering from a brain tumor and my balance is off right now." She was very nice about it and complied and assisted me when we returned.
Now to the adventure! It was phenonmenal! We felt as though we were on a National Geographic Expedition! In the kayak the oscillopsia wasn't too bad (oh yeah you don't know about that yet so sometime I will write a post about the meaning of the term). The water was very clear up there but probably poor visibility for the area due to the warmth of the water and plankton right now. To give you an idea, I could see about 15 feet down into the water and spotted several jellyfish and sea stars. In addition, it was low tide so we saw tons of red, purple, pink and orange sea stars clinging to the rocks with the sea lettuce, rock weed, and other algae (seaweed).
We paddled along the northern tip of Newcastle Island where we spotted several raccoons out for a shellfish harvest during the low tide. Many of them ran to hide among the large rock formations but a mother and her two young kept hunting along the shore, allowing us to view them as we floated by.
The plan was to paddle around Newcastle Island and go swimming on one of the sandy beaches but we were too enticed to kayak more north d toward some distant rock outcroppings in search of harbor seals. When we finally made it to the rock outcroppings I thought it was going to be a bust but Harley heard one and saw it sitting on a rock. He pointed it out to me just before it decided to go for a dip.
That was pretty cool but nothing compared to when we made it around the rock outcropping. First we saw a couple and then there was a huge herd playing in the water as if it were a community seal beach! There were probably around 50 seals! We kept our distance as required by law but they swam out and monitored us on our boat at a 20-40 foot distance. They were literally all around us and were swimming in the same direction that our boat was moving.
We drifted between the outcroppings and noticed a lone rock with beige, white, and gray humps on it. As we floated by this isle we discovered the rock was for the seal pups and a couple of adult seals kept watch of us in the water so that we did not pose a threat. For some reason there was one lowly pup left alone on another rock and we floated unknowingly within 15 feet of him.
The seals continued to swim with us until it was clear we were heading too far from the comfort of their rocks. We passed by a rock full of cormorants and other birds. Some of them took off like jets across the water (similiar in flight to canadian geese).
Mother nature called so we continued to head north up the main shore in search of a safe pullout. When we checked the time we had to head back as we had less than an hour to return the boat and catch the ferry back to the mainland.
The water was rough in the section back towards Departure Bay. What a ride! You have to head straight into the wave because if you hit a wave from the side the boat may tip. Gosh this was such a rush! The view and perspective from the front of the boat is intense! Again the oscillopsia did not bother me because my focus and concentration were on the front of the boat, the wave ahead, and paddling like the dickens!
As we paddled our hearts out a sailboat cruised by with full wind in its sails and leaning at its side. Basically they were having a good ride too as I am sure they had a few knots going!
The ferry from Horseshoe Bay on the mainland was in the distance so we had to hurry up to try to beat it while crossing the small channel. On our way in we saw a woman attending a zodiac for a slew of divers down under and we continued to see the float plains coming in and out.
Nanaimo made quite an impression on us so we will be back for more!
Wednesday, August 24, 2005
Remiss
Hey! Just to let you know about my absence and lack of posts recently......
I have been out of town or busy trying to get ready to go out of town and keep up with cleaning things in the midst of a major bathroom remodel.
I just got back in from Moses Lake late Monday night (early Tuesday morning???) Had a good trip but being in the water is not what it used to be. I got a headache and I am not sure if it was from being in the sun too long when I am not supposed to be, from glaring into the sun and wind while tubing (no more water skiing as I don't have the balance), or from getting lost under the water with a dang life preserver and wetsuit on! (I got pulled under and disoriented and could not put my head above the surface.....Apparently I was swimming sideways butt up with my head submerged before I finally opened my eyes and found the light. The point is that I took in lots of algae laden water into my sinuses and swallowed some. Yummy! Not.)
Other than that and realizing I probably need to take some private swimming lessons, I had a fantastic visit with my family! My sister and her beau came from Idaho and my brother and sister in law came from Portland to pick me up and drive me to our parents. Because we are going on vacation next week, Harley had to work and was not able to accompany us.
Hopefully I will have a chance later today or tomorrow to write more about it. If not, I will be leaving again on friday and gone for another week. Now that Katie is improving and has been off leash in the yard for almost a month, we can finally take a vacation. Prior, we could not go for more than just a day trip. Therefore, we are heading to Victoria, BC for a couple days and exploring the coast and camping on VanCouver Island for the rest of our 7 day adventure. We are hoping to make it up to Tofino.
Oh yeah! Harley bought a huge spotlight for me as I have great difficulty walking around in the dark and usually have to get up in the middle of the night to use the restroom. (or lack there of while camping. LOL It would not be cool to roll over and fall in some sticks with my pants down in the middle of the night!)
So between now and then if I do not have a chance to blog before we leave, I will see you all again in September. Have a great end of the summer and August!
I have been out of town or busy trying to get ready to go out of town and keep up with cleaning things in the midst of a major bathroom remodel.
I just got back in from Moses Lake late Monday night (early Tuesday morning???) Had a good trip but being in the water is not what it used to be. I got a headache and I am not sure if it was from being in the sun too long when I am not supposed to be, from glaring into the sun and wind while tubing (no more water skiing as I don't have the balance), or from getting lost under the water with a dang life preserver and wetsuit on! (I got pulled under and disoriented and could not put my head above the surface.....Apparently I was swimming sideways butt up with my head submerged before I finally opened my eyes and found the light. The point is that I took in lots of algae laden water into my sinuses and swallowed some. Yummy! Not.)
Other than that and realizing I probably need to take some private swimming lessons, I had a fantastic visit with my family! My sister and her beau came from Idaho and my brother and sister in law came from Portland to pick me up and drive me to our parents. Because we are going on vacation next week, Harley had to work and was not able to accompany us.
Hopefully I will have a chance later today or tomorrow to write more about it. If not, I will be leaving again on friday and gone for another week. Now that Katie is improving and has been off leash in the yard for almost a month, we can finally take a vacation. Prior, we could not go for more than just a day trip. Therefore, we are heading to Victoria, BC for a couple days and exploring the coast and camping on VanCouver Island for the rest of our 7 day adventure. We are hoping to make it up to Tofino.
Oh yeah! Harley bought a huge spotlight for me as I have great difficulty walking around in the dark and usually have to get up in the middle of the night to use the restroom. (or lack there of while camping. LOL It would not be cool to roll over and fall in some sticks with my pants down in the middle of the night!)
So between now and then if I do not have a chance to blog before we leave, I will see you all again in September. Have a great end of the summer and August!
Thursday, August 18, 2005
The Rare Gem
Today was a very rare day because I don't recall feeling any sadness today. Now I have many good days and wonderful friends. There are friends who help me with learning sign language, who take me to parades and events, who take me into the mountains to go on a hike, who go for walks with me, who read my thoughts and offer comfort, praise and encouragement, who share dinners with me, who chat online with me, who share the celebrations of their lives with me, who come and visit and many other things. For this I am quite fortunate. I also have a wonderful family and husband who are supportive and close. I love them dearly and I cannot imagine what my world would be like without them.
However, despite the comfort and joy I feel from my family, friends, and dogs it is rare that a day goes by without some glimmer of sadness for what I have gone through, what I have personally lost, and what the future may hold but cannot be predicted. It is hard living with NF2 physically for many and emotionally I believe for us all. You would not fully know it because I choose often not to write about it or to keep it hidden within if possible.
But today I can honestly say I was rather content. There may have been a moment of passing sadness somewhere. If so, it was short and ran from my memory rather quickly as I don't recall it. As a matter of fact I was just quietly reflecting while cleaning the kitchen and realized that I think I made it a day without anger, sadness, grief, or anguish. The day began overcast and rainy but inside I feel as though the sun was shining in my heart. I absolutely love moments like this. It makes me feel satisfied, like there is positive and important work to be done, and that I have something to hope for.
I wanted to take a short moment to share this feeling with you so that I will not forget it. Perhaps on the days that darkness invades I can come back and visit this place of contentment where the light is shining.
However, despite the comfort and joy I feel from my family, friends, and dogs it is rare that a day goes by without some glimmer of sadness for what I have gone through, what I have personally lost, and what the future may hold but cannot be predicted. It is hard living with NF2 physically for many and emotionally I believe for us all. You would not fully know it because I choose often not to write about it or to keep it hidden within if possible.
But today I can honestly say I was rather content. There may have been a moment of passing sadness somewhere. If so, it was short and ran from my memory rather quickly as I don't recall it. As a matter of fact I was just quietly reflecting while cleaning the kitchen and realized that I think I made it a day without anger, sadness, grief, or anguish. The day began overcast and rainy but inside I feel as though the sun was shining in my heart. I absolutely love moments like this. It makes me feel satisfied, like there is positive and important work to be done, and that I have something to hope for.
I wanted to take a short moment to share this feeling with you so that I will not forget it. Perhaps on the days that darkness invades I can come back and visit this place of contentment where the light is shining.
Tuesday, August 16, 2005
Pudding Fetish
Now it is pudding. I used to only eat tapioca or rice pudding. I despised other flavors or kinds. Yet now I can't get enough of pudding....sugar free and fat free chocolate, white chocolate, vanilla, lemon, and banana.
The chocolate milk tasted good but was making me sick I think. I had a tall glass 3 days in a row and the last day I drank it I got horrible stomach cramps. In addition, I had a bad case of the runs each day. So I was trying to figure out if I had become lactose intolerant. It did not seem to bother me much if I ate things with milk in them, only if I tried to drink the milk. When I had cereal in the past I did not get sick but I did not have too much milk because I have never been a milk drinker. Therefore, I concluded that maybe it was the chocolate syrup I put in the milk. In any case, things seem to be fine if I just make and eat pudding.
By the way, prior to treatment I was a big yogurt eater. I stopped eating yogurt because when I was taking steroids it was too acidic for my mouth. Then while off the steroids it tasted too sweet. Now it just freaks me out because of all the dental problems I have and my fear of exposing my teeth to the high acid content.
Ice cream I don't much care for anymore either (This is from someone who was a HUGE ice cream fan.....my favorite being mackinaw island fudge). It is too cold, bothers my teeth n0w (over the last 3 months) and tastes too sweet. Yet I really like the pudding.
Oh yeah by the way and slightly off topic; I had to break down and buy some bananas and potatoes to start eating again. I was waking up every morning for a couple weeks with charlie horses in my calves (leg cramps). The diamox I have been taking depletes the body of potassium and it is hard to find a variety of food (low in carbs) that has enough potassium content in it.
The whole point of this post is that the body really goes through quite a progression of taste changes after treatment and certain medicines. I am not complaining though. This is probably one of the benefits depending on how you look at it. ;o)
The chocolate milk tasted good but was making me sick I think. I had a tall glass 3 days in a row and the last day I drank it I got horrible stomach cramps. In addition, I had a bad case of the runs each day. So I was trying to figure out if I had become lactose intolerant. It did not seem to bother me much if I ate things with milk in them, only if I tried to drink the milk. When I had cereal in the past I did not get sick but I did not have too much milk because I have never been a milk drinker. Therefore, I concluded that maybe it was the chocolate syrup I put in the milk. In any case, things seem to be fine if I just make and eat pudding.
By the way, prior to treatment I was a big yogurt eater. I stopped eating yogurt because when I was taking steroids it was too acidic for my mouth. Then while off the steroids it tasted too sweet. Now it just freaks me out because of all the dental problems I have and my fear of exposing my teeth to the high acid content.
Ice cream I don't much care for anymore either (This is from someone who was a HUGE ice cream fan.....my favorite being mackinaw island fudge). It is too cold, bothers my teeth n0w (over the last 3 months) and tastes too sweet. Yet I really like the pudding.
Oh yeah by the way and slightly off topic; I had to break down and buy some bananas and potatoes to start eating again. I was waking up every morning for a couple weeks with charlie horses in my calves (leg cramps). The diamox I have been taking depletes the body of potassium and it is hard to find a variety of food (low in carbs) that has enough potassium content in it.
The whole point of this post is that the body really goes through quite a progression of taste changes after treatment and certain medicines. I am not complaining though. This is probably one of the benefits depending on how you look at it. ;o)
Thursday, August 11, 2005
The Oddity of Things
Now if this isn't wild or bizarre I don't know what is.
Out of curiousity I decided to do a yahoo search under "NF2" to see if I came up with anything new that might have been published recently. Basically the first page of results are things I already knew or have already seen. I thought to myself "Surely there must be more results".
As expexted, there were quite a few more pages of entries. On the second yahoo search page I saw a result with my name under it from an author in "Mercer Island, WA". Hey that is just a hop, skip, and a jump from where I live! The site was titled "rebekah - nf2 - 104". The name of course is spelled in Hebrew and that is what the website is about: "artistic renditions of Hebrew letters". I was intrigued to I had to check it out.
On the page was the meaning of my name showing my name "Rebecca" as a variant spelling. Further, I never before really did make the connection of the story of Rebekah in the bible. Sure we studied it in CCD but the focus was really on the story of Christ. I knew this but somehow forgot in my subconscious that Rebekah was the mother of Jacob and Esau. I always did like the name Jacob (no special reason) and I used to sit for this wonderful little boy by that name. In any case, when we adopted our dogs, the man had already named the male puppy "Jacob" and called him "Jake" for short. We liked the name and it seemed to fit him. Mostly I call him "Jake" but on occassion he is called "Jacob" too.
Last it was interesting reading the meaning of the Hebrew letters behind the name. It is long so I will let you click the link (title of the post) if you are interested in seeing more. The first part "Resh" which sounds like "R" means "Beginning" or "Head".
Whoa! How weird eh? I definitely did not expect to find this kind of coincidental connection when innocently looking up "NF2".
Out of curiousity I decided to do a yahoo search under "NF2" to see if I came up with anything new that might have been published recently. Basically the first page of results are things I already knew or have already seen. I thought to myself "Surely there must be more results".
As expexted, there were quite a few more pages of entries. On the second yahoo search page I saw a result with my name under it from an author in "Mercer Island, WA". Hey that is just a hop, skip, and a jump from where I live! The site was titled "rebekah - nf2 - 104". The name of course is spelled in Hebrew and that is what the website is about: "artistic renditions of Hebrew letters". I was intrigued to I had to check it out.
On the page was the meaning of my name showing my name "Rebecca" as a variant spelling. Further, I never before really did make the connection of the story of Rebekah in the bible. Sure we studied it in CCD but the focus was really on the story of Christ. I knew this but somehow forgot in my subconscious that Rebekah was the mother of Jacob and Esau. I always did like the name Jacob (no special reason) and I used to sit for this wonderful little boy by that name. In any case, when we adopted our dogs, the man had already named the male puppy "Jacob" and called him "Jake" for short. We liked the name and it seemed to fit him. Mostly I call him "Jake" but on occassion he is called "Jacob" too.
Last it was interesting reading the meaning of the Hebrew letters behind the name. It is long so I will let you click the link (title of the post) if you are interested in seeing more. The first part "Resh" which sounds like "R" means "Beginning" or "Head".
Whoa! How weird eh? I definitely did not expect to find this kind of coincidental connection when innocently looking up "NF2".
Tuesday, August 09, 2005
The Passion
Have you seen the "Passion of Christ" yet? If not I would highly recommend it. Movies such as "The Pianist", "Hotel Rhwanda", and "The Passion 0f Christ" are real stories. They are stories about humanity, suffering, enduring, and perseverance.
When I see such movies it puts things into perspective. Yes my plight with NF2 is no joy ride but I am extremely lucky. After watching each of these movies I thought to myself how I rather be where I am than be forced to endure what the main characters or people in each of these stories did.
I am surrounded by comfort and none of these people had that in their situation. In fact, each of these characters encountered a point where they were terrorized and felt alone (even Jesus did at one point). I have to admit I have been fearful and scared but I have never felt alone, without comfort, or terrorized.
All the movies can be difficult to watch because it is hard to accept how inhumane these people were treated. You can feel it like knives digging into your skin.
After watching "The Passion of Christ" and being horrified by what Jesus had to go through, I was surprised to stand up from my chair and feel a tear or two drop from my eye. I can't cry (due to loss of tear production) and I did not have a breathing or non-speaking episode. I just casually stood up to shut off the TV and DVD player and a tear rolled down my cheek. I went upstairs and the right side of my cheek was wet (the eye that gets dried out from the facial weakness).
Over the last year I have watched many movies that I have been emotionally overcome by, but never have I been able to develop so much as a tear before this one.
When I see such movies it puts things into perspective. Yes my plight with NF2 is no joy ride but I am extremely lucky. After watching each of these movies I thought to myself how I rather be where I am than be forced to endure what the main characters or people in each of these stories did.
I am surrounded by comfort and none of these people had that in their situation. In fact, each of these characters encountered a point where they were terrorized and felt alone (even Jesus did at one point). I have to admit I have been fearful and scared but I have never felt alone, without comfort, or terrorized.
All the movies can be difficult to watch because it is hard to accept how inhumane these people were treated. You can feel it like knives digging into your skin.
After watching "The Passion of Christ" and being horrified by what Jesus had to go through, I was surprised to stand up from my chair and feel a tear or two drop from my eye. I can't cry (due to loss of tear production) and I did not have a breathing or non-speaking episode. I just casually stood up to shut off the TV and DVD player and a tear rolled down my cheek. I went upstairs and the right side of my cheek was wet (the eye that gets dried out from the facial weakness).
Over the last year I have watched many movies that I have been emotionally overcome by, but never have I been able to develop so much as a tear before this one.
Buzz Buzz Goes the Beauty
Some days are hard. There are days where memories of who I was before my demise plague my waking thoughts. You would not completely understand it unless you have befallen such a trajedy yourself. One where there is not a reverse direction or a point when things end, all is well, and it is back the way it was before.
Of course when one endures trajedy of any sort one is changed. I recall that when I had cancer things were terrible, a lesson was learned, I got better and went on with life. I can think of several situations in which one may physically be restored to their previous state but perhaps emotionally changed as a person.
However, like someone who has become paralyzed, with NF2 life does change whether you want it to or not. Yes of course there is a lesson learned but one must also learn to adapt to this new self which can be a tremendous struggle to overcome. "No longer who I was but not yet who I will be." - Michael Harvey, PhD.
Saturday was such a day for me. I can't recall exactly what triggered it. I have phases of going in and out. No it really is not related to becoming deaf but instead it is all of the other things I am beginning to discover and piece together. Although at the time it may have seemed rather ordinary, I am haunted by some of the marvelous physical challenges I have accomplished. I cannot even fathom how I did something as simple as rollerblading over broken side walk or jumping bumps and curbs. I truly do miss having my balance and previous level of athletisism. My thinking was like Sir Edmund Hillary when asked why he climbed Everest "Because I can." When I see a mountain it pains me greatly that I cannot climb it.
I was caught in a tangle of emotion feeling sorry for myself again. Harley was waking up and I did not want him to notice. Remember that I cannot cry but somehow he is able to read the expression on my face. I stared blankly out the window in my self pity. The day was beautiful! A day where I would have been out doing something such as diving or hiking or just messing around outside. I was pulled into a trance of deep sadness.
You know those optical illusion pictures where you see nothing at first and if you stare long enough the hidden art seems to pop out at you? Well it was like that. At first I just all I could see was the window screen in my attempts to look away. Then I looked beyond and noticed the sun gleaming on all the vegetation and the trees up on the hill standing tall as if in a painting.
All of a sudden I witnessed an amazing sight! LOL No I did not see the image of Christ nestled in the trees but a dragonfly! I had never seen one at the cabin before! For summer this may not be very amazing to some of you but normally dragonflies frequent ponds, riverbanks, wetlands, etc. But our home is not in such a location! The nearest tiny lake is a mile away and it is surrounded by homes. Further, there is a main road (busy in the summer) in route to our house.
I immediately got excited and looked at Harley. When I looked back out the window I saw another one. Wow what a lucky day! I was glued to the scenery out our bedroom window. I thought I was seeing several dragonflies when I began to realize it was the same one the whole time! It kept flying triumphantly back and forth outside my window as if it were saying "Bzzz Bzzz Never Fear For I Am Here!" It was entertaining me with its own personal dance!
The sight was beautiful and I then realized if not in this time and space, I might have never noticed such a gift!
Of course when one endures trajedy of any sort one is changed. I recall that when I had cancer things were terrible, a lesson was learned, I got better and went on with life. I can think of several situations in which one may physically be restored to their previous state but perhaps emotionally changed as a person.
However, like someone who has become paralyzed, with NF2 life does change whether you want it to or not. Yes of course there is a lesson learned but one must also learn to adapt to this new self which can be a tremendous struggle to overcome. "No longer who I was but not yet who I will be." - Michael Harvey, PhD.
Saturday was such a day for me. I can't recall exactly what triggered it. I have phases of going in and out. No it really is not related to becoming deaf but instead it is all of the other things I am beginning to discover and piece together. Although at the time it may have seemed rather ordinary, I am haunted by some of the marvelous physical challenges I have accomplished. I cannot even fathom how I did something as simple as rollerblading over broken side walk or jumping bumps and curbs. I truly do miss having my balance and previous level of athletisism. My thinking was like Sir Edmund Hillary when asked why he climbed Everest "Because I can." When I see a mountain it pains me greatly that I cannot climb it.
I was caught in a tangle of emotion feeling sorry for myself again. Harley was waking up and I did not want him to notice. Remember that I cannot cry but somehow he is able to read the expression on my face. I stared blankly out the window in my self pity. The day was beautiful! A day where I would have been out doing something such as diving or hiking or just messing around outside. I was pulled into a trance of deep sadness.
You know those optical illusion pictures where you see nothing at first and if you stare long enough the hidden art seems to pop out at you? Well it was like that. At first I just all I could see was the window screen in my attempts to look away. Then I looked beyond and noticed the sun gleaming on all the vegetation and the trees up on the hill standing tall as if in a painting.
All of a sudden I witnessed an amazing sight! LOL No I did not see the image of Christ nestled in the trees but a dragonfly! I had never seen one at the cabin before! For summer this may not be very amazing to some of you but normally dragonflies frequent ponds, riverbanks, wetlands, etc. But our home is not in such a location! The nearest tiny lake is a mile away and it is surrounded by homes. Further, there is a main road (busy in the summer) in route to our house.
I immediately got excited and looked at Harley. When I looked back out the window I saw another one. Wow what a lucky day! I was glued to the scenery out our bedroom window. I thought I was seeing several dragonflies when I began to realize it was the same one the whole time! It kept flying triumphantly back and forth outside my window as if it were saying "Bzzz Bzzz Never Fear For I Am Here!" It was entertaining me with its own personal dance!
The sight was beautiful and I then realized if not in this time and space, I might have never noticed such a gift!
Monday, August 08, 2005
So tired.....Tired of waiting for YOOOUUU (imagine the song) - MRI results
Well the news. Let's see, I had a followup MRI of the head on July 25th and one of the spine on July 27th. As far as my spine I have been told it is stable. I have looked at the films and 6 tumors have been pointed out to me. Apparently they were also there in January and have not changed in size. They occupy the lower thoracic and lumbar regions of the spine (lower to midback). To be honest I have not read the written report yet. I was just so ticked about the last appointment that I never opened the envelope containing the report when I left there.
The head....Dang mystery I tell you! Well.......I am assured from one doctor that it is changing from a "cystic" to "solid" phase which I never heard of before now. First the stupid thing was swelling like a hammered thumb and then it started to die from the middle but we could not tell at that point if it would continue to go through necrosis (cell death). There was a 50/50 chance that it was dying or that it was still living on the outside. At that point (I think back in March maybe) I had to take a gamble: either wait another 2-3 months in hopes that it would continue to die or have my head opened up and the "thing" extracted. If I was "opened up" there was a 50/50 chance that the surgeons would just be removing dead tissue rendering the surgery unnecessary or they would remove a tumor that was still living on the outside and growing but dead on the inside. I chose to put my faith in and God and time (I waited).
In May things were looking good. The tumor finally stopped swelling (11 months after treatment) and the tumor was nearly all black (necrosis - dead). Ahh relief! Now I was told that we were waiting for the tumor to hopefully collapse (shrink a little so it would not be pressing on the brainstem so much). When I inquired roughly how long this could take I got the ballpark figure of 6 months to a year. Before I had the treatment I had known that it takes 2 years to know if the procedure was a success but I did not however, know that it would be this difficult. I just thought life would go on the way it had since 1999 when I was diagnosed (meaning I could still do everything I enjoyed, I looked fine, and my vision was fine......in other words, we would just let the tumor do its thing while life went on as usual.) I knew I would probably be deaf but I accepted that.
My most recent MRI however showed growth of the light color (white) area into the previously black but it had not increased in size (I would be in trouble if it had!). I did not know this beforehand because I went straight from the MRI scan to meeting with the doctor. AND some nimrod did not schedule a captioner! Even though this appointment was made months in advance and it is stressed in my file that I need accommodation (I have provided a contact sheet of 5 captioners) some new person was hired that did not know any better (so I am told).
I stressed to the doctor my concern about the tumor not collapsing and what were to happen if one of the other two tumors started to grow. Everyone has been so focused on the problems of the one that we have not addressed the other two (a 2.8 cm meningioma touching the tumor that was swelling from the treatment and a 1.8 cm acoustic neuroma on the left side). Each time I had been assured that those tumors were not growing. But then I was thinking one day, "What if one of them starts to grow? There is not enough space anymore to allow for swelling. My brainstem would be compromised. Thus if that scenario happened, I would need to have surgery to remove it. There would still be swelling but more room for the swelling to happen."
So with this thought in mind, I asked the doctor in this new scenario of "from cystic to solid" phase how long it would be before the tumor collapses. It of course will never dissapate like a malignant tumor but at least it could shrink enough hopefully to allow the other tumors to be treated and for my brainstem to have more room. I was kind of awestruck when this time she told me that it could take 2-4 years if even at all! Then my mind starting churning and I was thinking how since I was diagnosed the acoustic neuroma tumors grew at a consistent rate of 2 mm every 6 months. Then for some unknown reason (stress???) the right side grew 1 cm in 6 months. Something like that could happen to the left side at any time.
It is not a very comforting thought. The past two days I have felt head pressure on the left side and surges. This really freaks me out! I am trying really hard to live low stress, exercise daily, and I have been eating well. It stinks to have something uncontrollable in your noggin.
Well the doctor here seems to think this is a good thing: the tumor changing from "cystic" to "solid". I asked her how she knew that or could tell from the MRI films and she told me "experience". She does have experience .......the best in the area for stereotactic radiation (Gamma Knife and FSR). However, the form of treatment I had (cyberknife radiosurgery) is not available in this state and I have a very rare disorder (extremely rare). I have come to discover that the tumors of people with NF2 are VERY different from other patients (acoustic neuroma....meaning 1 tumor on one side, and other brain tumors).
Therefore, I consulted on a cyberknife board with one of the doctors and he was unfamiliar with the terms to describe post treatment characteristics of the tumor (cystic to solid). I think I should send my films back down to Stanford and consult with the doctors down there and maybe a few other out of state docs familiar with cyberknife.
Here are the statements from the MRI report that are in question:
FINDING:
"The right acoustic neuroma is cystic with a solid lateral component extending into and expanding the right internal auditory canal. On today's study the solid lateral component is larger with extension of the solid component centrally and reduction of the central cyst, but the overall size and volume of the tumor is unchanged."
IMPRESSION:
There has been no change in the degree of bilateral compression of the medulla and pons; the only difference between the two studies is a reduction in the volume of the central cystic component of the right acoustic neuroma with the apparent growth and extension of the solid lateral (intracanalicular) component of the tumor centrally into the cystic cavity."
I invite your comments.
The head....Dang mystery I tell you! Well.......I am assured from one doctor that it is changing from a "cystic" to "solid" phase which I never heard of before now. First the stupid thing was swelling like a hammered thumb and then it started to die from the middle but we could not tell at that point if it would continue to go through necrosis (cell death). There was a 50/50 chance that it was dying or that it was still living on the outside. At that point (I think back in March maybe) I had to take a gamble: either wait another 2-3 months in hopes that it would continue to die or have my head opened up and the "thing" extracted. If I was "opened up" there was a 50/50 chance that the surgeons would just be removing dead tissue rendering the surgery unnecessary or they would remove a tumor that was still living on the outside and growing but dead on the inside. I chose to put my faith in and God and time (I waited).
In May things were looking good. The tumor finally stopped swelling (11 months after treatment) and the tumor was nearly all black (necrosis - dead). Ahh relief! Now I was told that we were waiting for the tumor to hopefully collapse (shrink a little so it would not be pressing on the brainstem so much). When I inquired roughly how long this could take I got the ballpark figure of 6 months to a year. Before I had the treatment I had known that it takes 2 years to know if the procedure was a success but I did not however, know that it would be this difficult. I just thought life would go on the way it had since 1999 when I was diagnosed (meaning I could still do everything I enjoyed, I looked fine, and my vision was fine......in other words, we would just let the tumor do its thing while life went on as usual.) I knew I would probably be deaf but I accepted that.
My most recent MRI however showed growth of the light color (white) area into the previously black but it had not increased in size (I would be in trouble if it had!). I did not know this beforehand because I went straight from the MRI scan to meeting with the doctor. AND some nimrod did not schedule a captioner! Even though this appointment was made months in advance and it is stressed in my file that I need accommodation (I have provided a contact sheet of 5 captioners) some new person was hired that did not know any better (so I am told).
I stressed to the doctor my concern about the tumor not collapsing and what were to happen if one of the other two tumors started to grow. Everyone has been so focused on the problems of the one that we have not addressed the other two (a 2.8 cm meningioma touching the tumor that was swelling from the treatment and a 1.8 cm acoustic neuroma on the left side). Each time I had been assured that those tumors were not growing. But then I was thinking one day, "What if one of them starts to grow? There is not enough space anymore to allow for swelling. My brainstem would be compromised. Thus if that scenario happened, I would need to have surgery to remove it. There would still be swelling but more room for the swelling to happen."
So with this thought in mind, I asked the doctor in this new scenario of "from cystic to solid" phase how long it would be before the tumor collapses. It of course will never dissapate like a malignant tumor but at least it could shrink enough hopefully to allow the other tumors to be treated and for my brainstem to have more room. I was kind of awestruck when this time she told me that it could take 2-4 years if even at all! Then my mind starting churning and I was thinking how since I was diagnosed the acoustic neuroma tumors grew at a consistent rate of 2 mm every 6 months. Then for some unknown reason (stress???) the right side grew 1 cm in 6 months. Something like that could happen to the left side at any time.
It is not a very comforting thought. The past two days I have felt head pressure on the left side and surges. This really freaks me out! I am trying really hard to live low stress, exercise daily, and I have been eating well. It stinks to have something uncontrollable in your noggin.
Well the doctor here seems to think this is a good thing: the tumor changing from "cystic" to "solid". I asked her how she knew that or could tell from the MRI films and she told me "experience". She does have experience .......the best in the area for stereotactic radiation (Gamma Knife and FSR). However, the form of treatment I had (cyberknife radiosurgery) is not available in this state and I have a very rare disorder (extremely rare). I have come to discover that the tumors of people with NF2 are VERY different from other patients (acoustic neuroma....meaning 1 tumor on one side, and other brain tumors).
Therefore, I consulted on a cyberknife board with one of the doctors and he was unfamiliar with the terms to describe post treatment characteristics of the tumor (cystic to solid). I think I should send my films back down to Stanford and consult with the doctors down there and maybe a few other out of state docs familiar with cyberknife.
Here are the statements from the MRI report that are in question:
FINDING:
"The right acoustic neuroma is cystic with a solid lateral component extending into and expanding the right internal auditory canal. On today's study the solid lateral component is larger with extension of the solid component centrally and reduction of the central cyst, but the overall size and volume of the tumor is unchanged."
IMPRESSION:
There has been no change in the degree of bilateral compression of the medulla and pons; the only difference between the two studies is a reduction in the volume of the central cystic component of the right acoustic neuroma with the apparent growth and extension of the solid lateral (intracanalicular) component of the tumor centrally into the cystic cavity."
I invite your comments.
Sunday, August 07, 2005
Wanna see my neat trick?
I have not gone into detail much about it and have been very reluctant to post photos of myself, but I have suffered from facial paralysis post treatment. It probably started earlier and gradually built up to its full potential as I recall back before that shocking horror on the evening of December 14th I had little clues or hints along the way.
I think back in January I had a facial nerve test at the Seattle Ear Clinic that I may have mentioned. At the time my facial nerve was only operating at 52% out of 100%. (100% being the normal looking population). Most people would refer to it as "facial palsy" but that it is not. Facial palsy is caused by a bacterial or viral infection and can often be remedied over time with the use of steroids. A neurosurgeon way back in February corrected us as in my case (as well as others with NF2 or these type of brain tumors) it is considered facial weakness/paralysis and is the result of the tumor, surgery, or radiation damaging the nerve.
Many people think it has improved but that might be because my head (face) is no longer swelled up like a dang pumpkin now that I am off steroids. It has kind of been a pain in the butt. Basically the facial weakness has ruined my photography eye which is the only one I can keep open, causes eye dryness and blurred vision in that eye, has made eating a challenge (I can only chew on the opposite side of my mouth), has caused food to get trapped in the right side of my mouth (between the teeth and gums) which is very difficult to get out without swishing water around my mouth several times while holding the lips shut, I cannot take very big bites and eat with my mouth closed (thus I have to take small bites or hold a napkin in front of my face), and I can no longer drink from glasses or bottles. I always need to use a straw so that I do not dribble on myself. Oh I did not mention what it does to a woman's self esteen either in a very "Cosmopolitan" driven society with age and wrinkles looming just around the corner.
Despite all that, I have managed to amuse myself. First of all, hehe, winking at someone is no problem whereas I just could not really wink before without blinking both eye lids. I can make interesting faces like I am smiling on one side as if thinking "Hmmn." or being sarcastic or a smart alec (spelling??). I can raise my eye brow on the left side repeatedly at someone. Yet the best trick of all I have found is smiling or curling my lip on the right and raising my eye brow on the left in a repetitive motion. I don't know if I can do it without looking in the mirror. I can of course smile on the left but recently with my deflated face I have been able to smile some on the right. This takes concentration as I have to not move my smile on the left side of my face which is really easy (the facial weakness is on the right). LOL Anyhow, this really seems to entertain me when I am observing my face in the mirror and practicing smiling and moving the face.
I think back in January I had a facial nerve test at the Seattle Ear Clinic that I may have mentioned. At the time my facial nerve was only operating at 52% out of 100%. (100% being the normal looking population). Most people would refer to it as "facial palsy" but that it is not. Facial palsy is caused by a bacterial or viral infection and can often be remedied over time with the use of steroids. A neurosurgeon way back in February corrected us as in my case (as well as others with NF2 or these type of brain tumors) it is considered facial weakness/paralysis and is the result of the tumor, surgery, or radiation damaging the nerve.
Many people think it has improved but that might be because my head (face) is no longer swelled up like a dang pumpkin now that I am off steroids. It has kind of been a pain in the butt. Basically the facial weakness has ruined my photography eye which is the only one I can keep open, causes eye dryness and blurred vision in that eye, has made eating a challenge (I can only chew on the opposite side of my mouth), has caused food to get trapped in the right side of my mouth (between the teeth and gums) which is very difficult to get out without swishing water around my mouth several times while holding the lips shut, I cannot take very big bites and eat with my mouth closed (thus I have to take small bites or hold a napkin in front of my face), and I can no longer drink from glasses or bottles. I always need to use a straw so that I do not dribble on myself. Oh I did not mention what it does to a woman's self esteen either in a very "Cosmopolitan" driven society with age and wrinkles looming just around the corner.
Despite all that, I have managed to amuse myself. First of all, hehe, winking at someone is no problem whereas I just could not really wink before without blinking both eye lids. I can make interesting faces like I am smiling on one side as if thinking "Hmmn." or being sarcastic or a smart alec (spelling??). I can raise my eye brow on the left side repeatedly at someone. Yet the best trick of all I have found is smiling or curling my lip on the right and raising my eye brow on the left in a repetitive motion. I don't know if I can do it without looking in the mirror. I can of course smile on the left but recently with my deflated face I have been able to smile some on the right. This takes concentration as I have to not move my smile on the left side of my face which is really easy (the facial weakness is on the right). LOL Anyhow, this really seems to entertain me when I am observing my face in the mirror and practicing smiling and moving the face.
Friday, August 05, 2005
Simple Pleasures
My gosh! I just made myself a glass of chocolate skim milk that was absolutely fantastic! I had to get my calcium in and we have lots of milk here (Harley is not drinking it because it has too many carbs.......He is doing the south beach diet thing that I think would absolutely kill me.)
I made the concoction in one of my favorite glasses that my friend brought me back from Anchorage, Alaska. Basically it is a heavy duty type of beer glass (even though I don't drink beer....hehe). I used to love to drink out of those glasses but alas my facial paralysis had made the task a challenge. I successfully took a sip (slurp) but a drip of milk still leaked out the right side and dripped down the side of the glass. I thought, "Ok it is too hot of a day and I am too thirsty to fool around with this monkey business!" Therefore I whipped out a straw and sucked down the glass in a minute or two!
Words cannot describe the exhilarating feeling! The best way to describe it is as if I had walked the Mojave Desert, was extremely parched and desperately in need of water. Ok maybe that is a little bit of an exageration but I felt like a person who walked the desert and finally relieved his/her thirst with a nice cool bottle of water.
Other joys of the day: I have had in my head the tune from Prince "Take Me With You" for a few days now. I think it all started when I was looking up at the stars and the tune "Arms of Orion" popped into my head. I like those songs but I was thrilled this afternoon when one of my favorite Gaelic songs by Loreena McKennit came blaring through my brain with a triumphant force! "The Old Ways" http://www.lyricslyricsandlyrics.com/l/30876/
Angel I know this will make you pop in the CD as I remember it also being one of your favorites. ;o)
I made the concoction in one of my favorite glasses that my friend brought me back from Anchorage, Alaska. Basically it is a heavy duty type of beer glass (even though I don't drink beer....hehe). I used to love to drink out of those glasses but alas my facial paralysis had made the task a challenge. I successfully took a sip (slurp) but a drip of milk still leaked out the right side and dripped down the side of the glass. I thought, "Ok it is too hot of a day and I am too thirsty to fool around with this monkey business!" Therefore I whipped out a straw and sucked down the glass in a minute or two!
Words cannot describe the exhilarating feeling! The best way to describe it is as if I had walked the Mojave Desert, was extremely parched and desperately in need of water. Ok maybe that is a little bit of an exageration but I felt like a person who walked the desert and finally relieved his/her thirst with a nice cool bottle of water.
Other joys of the day: I have had in my head the tune from Prince "Take Me With You" for a few days now. I think it all started when I was looking up at the stars and the tune "Arms of Orion" popped into my head. I like those songs but I was thrilled this afternoon when one of my favorite Gaelic songs by Loreena McKennit came blaring through my brain with a triumphant force! "The Old Ways" http://www.lyricslyricsandlyrics.com/l/30876/
Angel I know this will make you pop in the CD as I remember it also being one of your favorites. ;o)
Wednesday, August 03, 2005
Madder Than Heck!
Sorry I have been delayed from posting. I am in a swirl of things: two MRIs last week, 2 doctors visits last week (all located far from my home), 1 this week, back to researching more shit about this NF2 crap again, trying to get out and get exercise, and then the regular duties of life come in too.
Yesterday was the goal to see a new doctor who supposedly knows about NF2 and is a neurologist/neurosurgeon. I have had a stiff back and neck and some pain for a month so we wanted to get him to take a look at it before I went to a chiropractor. We wanted to see if the spinal tumors I have (6 in total) were pressing on any major nerves and the source of my stiffness, pain, and balance problems.
Again I arrive early for the appointment and wait in the lobby but do not see my captioner. I am wondering if she is already setup in back or is late. They call me into this office where my films are all setup on these film lights mounted on the wall.
I see no captioner. I am angry! When I inquire where the captioner is the doctor tries to speak to me which made me even more mad. I inform him that I am deaf and I cannot understand him. He then asks me if I read lips. OOOOOHHH THE WRONG THING TO ASK ME RIGHT NOW!!!!!!!!!! I will refrain from using the cuss words of how I really feel about that.
Ya know, if I had just casually met him on the street, he did not know better, and I had no paper, then I could deal with that question and the ignorance behind it. However, this chump is billing my insurance a healthy wad of cash for this ridiculous fiasco and it is costing me a $15 co-pay, who knows how much in gas as it is a long drive there and back, and my time. There is often traffic both ways and an appointment in North Seattle (even just Seattle) totally blows the day!
Anyhow, I was really frustrated and ready to walk out but alas I drove all the way there (spent my time and gas) and traffic going back home was helacious at that time! So we sat down and I tell him how disappointed I am in a very firm and direct tone (indicating I am not happy in a sad kind of way but an angry kind of way).
LOL So what does he do next? I guess he was trying to make some kind of connection with me or assure me that he was experienced with deafness. The next thing he wrote made me even angrier! He tells me that he has a brother-in-law who is deaf. I have no idea if I rolled my eyes but that was sure my internal expression. I am thinking "Oh here we go! Some self righteous hearing person thinks they know all about deafness just because they happen to KNOW or KNOW OF somebody who is deaf." Knowing and interacting/communicating are two different things here folks. Sure my husband KNEW the singer "Jewel" when he was like 5 years old and lived in Homer, Alaska. He went to school with her. Does that make him in expert on her life?????? I think not.
Forgetting that I am paying for this shingding, I get emotionally involved and fed up with the attitude that some hearing people have about deafness or that all types of deafness are the same. NOT! I know he is most likely talking about a person who was deaf from birth or from childhood (which is a world of difference from being late deafened as an adult). I won't even get into all that right now. Therefore, in my pissed demeanor, I ask him if his brother-in-law was late deafened. He tells me that he thinks he was deaf since a child. I emphatically sign and tell him "That's different! That's different!" He goes on to tell me, that his brother-in-law speaks, writes, and he thought he could sign too. Knowing that the doctor obviously did not know a lick of sign (because I did sign some things to him which he seemed oblivious too) and did not know Jack Shit about deafness, I politely told him that his brother-in-law was probably raised with total communication. ANYWAY......the appointment shall we?
Well I have to admit it was really frustrating under the circumstances. To make things worse, the doctor was not very good at getting his thoughts to paper efficiently. His first statement "You have NF2". There was no question mark or period so I was not sure if he was making a statement, asking a question, confirming or what! I was thinking inside "Yeah no shit sherlock....I have known this for 6 years now and you should have known this if you did your job and read my file before the appointment!" How am I supposed to react to that? I must have had a look of disgust on my face. I really do not know.
Then he wrote something I could not even read or understand. Even reading it now I don't know but I just figured it out from memory as he pointed and moved his leg around. It says "Your leg (which looks like it is written as lej or by) is problems". I was thinking "What?????" which I must have said outloud. LOL Often times he started to write and did not finish or scratched it out. I am looking at the paper now and it says "This". This what???? Then he finally wrote out "What is your major problem". By then I burst out sarcastically "I have NF2. That is a major problem. LOL There are lots of things wrong with me!"
The rest of the dialogue will probably bore you or frustrate you. It is hard to follow and the notes are all over the place which is a chore to make sense of later. Thankfully the second half went a little better when my regular doctor stepped in and starting writing what he said. I think I probably did more talking than the doctor did communicating or explaining through writing. This is why I HATE not having a captioner!
We are not talking about a casual football play here from a coach! We are talking about my brain which is being squished like a stess ball from tumors. To properly understand what is happening in that head and spine there is lots of medical terminology covered within an explanation. Do you honestly feel the same quality of information is being delivered through writing from the sample of what I have given you above? Ok, let's say that you think that some doctors can accomplish writing everything out. Do you think that they will explain it as thoroughly in writing and as efficiently as the time it takes for them to speak it? If so, would it be legible? You see my point here how this last resort form of communication takes longer. The fact of the matter is that in the world today time is money. Therefore, for the deaf person who does not have proper accomodation, words must be shortened or part of the explanation eliminated. In other words, the whole detailed picture of the situation is not delivered or it is oversimplified.
In the next phase of the appointment, he stood up and moved over to the films and started speaking while pointing to stuff. That is where I am like "HOLD ON HERE BUDDY. LET'S JUMP BACK INTO THE DEAF WORLD". LOL no I did not say that but I immediately interupted him and told him that I was not going to be able to understand him if he did that. It is very apparent to me that this man either has no clue of working with anyone who is deaf or the patients he has seen just went along and did not say anything.
Basically I do not know what to tell you. The spinal tumors are very small and I have 6 which have not changed since my January MRI (info I obtained from my appointment last week with the radiation-oncologist). What the neurosurgeon/neurologist guy told me was "I would not recommend a chiro because of the tumors in your spine." Gee thanks man, you were alot of help! He did not recommend any alternative!
Then for some unknown reason (I never asked) he decides to give his medical opinion of my treatment decision after the fact. That is interesting because early on we did ask some other doctors what they would have done but they declined because what is the point. I have had a different neurosurgeon say to me "I never second guess a treatment decision that someone has made. You cannot go back." Why torment you over your decision? You made it and need to find a way to move on. But this guy decides my soul must not be dying enough and he has to stick another dagger in. Without me indicating or asking at all, he tells me that he would have recommended me to have it surgically removed first and then the remainder radiated after the surgery. He also tells me about the biggest risks of surgery which are all not promising (death was not included....that is a much easier route).
Other bits of information that were given I already knew or were kind of obvious. He did say that he did not want me to dive for another 6 months (FOR FRUITING OUT LOUD IT WILL BE NEARLY 2 YEARS BY THEN!). His reasoning did make sense and I was glad that he could formulate an intelligible response on this. In theory, the brain may experience more pressure while at depth (1ATM, 2ATM, 3ATM) and hypothetically could cause more swelling of the tumor while at depth. Seeing as I only have 7 mm of space between the tumors and brainstem, I need to do everything possible to keep it from getting larger or putting more pressure on the brainstem. Of course I am going to consult with other sources on this for second and third opinions. I was told that I could dive right after the treatment a year ago but of course this was before we knew I was going to experience many symptoms from tumor swelling. I decided to refrain from diving until the tumor stopped swelling and I was off the steroids (which is now....a year later). He also said to not strain myself while lifting weights because that puts additional pressure on the skull. Instead of lifting a heavier load I should be doing several reps at a more comfortable weight (which by the way is for muscle toning more than building).
The last thing kind of irritated me especially on a day like yesterday when I was feeling really down (NF2 has been robbing me of my passions away: diving, hiking, rollerblading, photography, the many things I wanted to do on my foreign travels). He wrote "You are doing very well. I know that there are many problems. But the BIG picture is that you are holding in there and hopefully this large tumor will decrease in size over the next few months."
Doing well. What is doing well...compared to what? I HAVE been waiting. Each time the extension gets longer and more things happen. It seems even though I was sick in the beginning I was somewhat better off. My vision was normal at that time, my balance was not the best but much better than n0w, I could see without everything bouncing around me, I did not have facial paralysis and could eat and drink normally, my eye was not in danger of being scratched or getting dried out. I never know what tomorrow is going to bring! It is horrible! From reading I may still end up in a wheelchair or going blind in one eye hence losing my ability to drive!
I just don't know what to say. This reminds me of a time when I was a shaving aide in a nursing home back when I was 17. I tried to be cheerful to all the patients. One day after I finished shaving a man, I said "Have a great day!" as I usually would. The man was in a wheelchair and very lonely. He got very angry and shook his fist at me while I was walking out the door. I was a little shocked. He yelled "OOOOOO You and your great day! You always say, Have a great day! What is so great about it here? You don't know what it is like to be here." At that brief moment I was struck. I really did not have any idea what it was like to be him or to be a patient in a nursing home. I could imagine but never quite fully comprehend how painful and humuliating that could be. I am not sure, but perhaps that is when I first started to awaken to empathy. But alas, that is a whole other story.
Now I am not as mad. I hope it lasts. I will have another head MRI and checkup in 3 months.
Yesterday was the goal to see a new doctor who supposedly knows about NF2 and is a neurologist/neurosurgeon. I have had a stiff back and neck and some pain for a month so we wanted to get him to take a look at it before I went to a chiropractor. We wanted to see if the spinal tumors I have (6 in total) were pressing on any major nerves and the source of my stiffness, pain, and balance problems.
Again I arrive early for the appointment and wait in the lobby but do not see my captioner. I am wondering if she is already setup in back or is late. They call me into this office where my films are all setup on these film lights mounted on the wall.
I see no captioner. I am angry! When I inquire where the captioner is the doctor tries to speak to me which made me even more mad. I inform him that I am deaf and I cannot understand him. He then asks me if I read lips. OOOOOHHH THE WRONG THING TO ASK ME RIGHT NOW!!!!!!!!!! I will refrain from using the cuss words of how I really feel about that.
Ya know, if I had just casually met him on the street, he did not know better, and I had no paper, then I could deal with that question and the ignorance behind it. However, this chump is billing my insurance a healthy wad of cash for this ridiculous fiasco and it is costing me a $15 co-pay, who knows how much in gas as it is a long drive there and back, and my time. There is often traffic both ways and an appointment in North Seattle (even just Seattle) totally blows the day!
Anyhow, I was really frustrated and ready to walk out but alas I drove all the way there (spent my time and gas) and traffic going back home was helacious at that time! So we sat down and I tell him how disappointed I am in a very firm and direct tone (indicating I am not happy in a sad kind of way but an angry kind of way).
LOL So what does he do next? I guess he was trying to make some kind of connection with me or assure me that he was experienced with deafness. The next thing he wrote made me even angrier! He tells me that he has a brother-in-law who is deaf. I have no idea if I rolled my eyes but that was sure my internal expression. I am thinking "Oh here we go! Some self righteous hearing person thinks they know all about deafness just because they happen to KNOW or KNOW OF somebody who is deaf." Knowing and interacting/communicating are two different things here folks. Sure my husband KNEW the singer "Jewel" when he was like 5 years old and lived in Homer, Alaska. He went to school with her. Does that make him in expert on her life?????? I think not.
Forgetting that I am paying for this shingding, I get emotionally involved and fed up with the attitude that some hearing people have about deafness or that all types of deafness are the same. NOT! I know he is most likely talking about a person who was deaf from birth or from childhood (which is a world of difference from being late deafened as an adult). I won't even get into all that right now. Therefore, in my pissed demeanor, I ask him if his brother-in-law was late deafened. He tells me that he thinks he was deaf since a child. I emphatically sign and tell him "That's different! That's different!" He goes on to tell me, that his brother-in-law speaks, writes, and he thought he could sign too. Knowing that the doctor obviously did not know a lick of sign (because I did sign some things to him which he seemed oblivious too) and did not know Jack Shit about deafness, I politely told him that his brother-in-law was probably raised with total communication. ANYWAY......the appointment shall we?
Well I have to admit it was really frustrating under the circumstances. To make things worse, the doctor was not very good at getting his thoughts to paper efficiently. His first statement "You have NF2". There was no question mark or period so I was not sure if he was making a statement, asking a question, confirming or what! I was thinking inside "Yeah no shit sherlock....I have known this for 6 years now and you should have known this if you did your job and read my file before the appointment!" How am I supposed to react to that? I must have had a look of disgust on my face. I really do not know.
Then he wrote something I could not even read or understand. Even reading it now I don't know but I just figured it out from memory as he pointed and moved his leg around. It says "Your leg (which looks like it is written as lej or by) is problems". I was thinking "What?????" which I must have said outloud. LOL Often times he started to write and did not finish or scratched it out. I am looking at the paper now and it says "This". This what???? Then he finally wrote out "What is your major problem". By then I burst out sarcastically "I have NF2. That is a major problem. LOL There are lots of things wrong with me!"
The rest of the dialogue will probably bore you or frustrate you. It is hard to follow and the notes are all over the place which is a chore to make sense of later. Thankfully the second half went a little better when my regular doctor stepped in and starting writing what he said. I think I probably did more talking than the doctor did communicating or explaining through writing. This is why I HATE not having a captioner!
We are not talking about a casual football play here from a coach! We are talking about my brain which is being squished like a stess ball from tumors. To properly understand what is happening in that head and spine there is lots of medical terminology covered within an explanation. Do you honestly feel the same quality of information is being delivered through writing from the sample of what I have given you above? Ok, let's say that you think that some doctors can accomplish writing everything out. Do you think that they will explain it as thoroughly in writing and as efficiently as the time it takes for them to speak it? If so, would it be legible? You see my point here how this last resort form of communication takes longer. The fact of the matter is that in the world today time is money. Therefore, for the deaf person who does not have proper accomodation, words must be shortened or part of the explanation eliminated. In other words, the whole detailed picture of the situation is not delivered or it is oversimplified.
In the next phase of the appointment, he stood up and moved over to the films and started speaking while pointing to stuff. That is where I am like "HOLD ON HERE BUDDY. LET'S JUMP BACK INTO THE DEAF WORLD". LOL no I did not say that but I immediately interupted him and told him that I was not going to be able to understand him if he did that. It is very apparent to me that this man either has no clue of working with anyone who is deaf or the patients he has seen just went along and did not say anything.
Basically I do not know what to tell you. The spinal tumors are very small and I have 6 which have not changed since my January MRI (info I obtained from my appointment last week with the radiation-oncologist). What the neurosurgeon/neurologist guy told me was "I would not recommend a chiro because of the tumors in your spine." Gee thanks man, you were alot of help! He did not recommend any alternative!
Then for some unknown reason (I never asked) he decides to give his medical opinion of my treatment decision after the fact. That is interesting because early on we did ask some other doctors what they would have done but they declined because what is the point. I have had a different neurosurgeon say to me "I never second guess a treatment decision that someone has made. You cannot go back." Why torment you over your decision? You made it and need to find a way to move on. But this guy decides my soul must not be dying enough and he has to stick another dagger in. Without me indicating or asking at all, he tells me that he would have recommended me to have it surgically removed first and then the remainder radiated after the surgery. He also tells me about the biggest risks of surgery which are all not promising (death was not included....that is a much easier route).
Other bits of information that were given I already knew or were kind of obvious. He did say that he did not want me to dive for another 6 months (FOR FRUITING OUT LOUD IT WILL BE NEARLY 2 YEARS BY THEN!). His reasoning did make sense and I was glad that he could formulate an intelligible response on this. In theory, the brain may experience more pressure while at depth (1ATM, 2ATM, 3ATM) and hypothetically could cause more swelling of the tumor while at depth. Seeing as I only have 7 mm of space between the tumors and brainstem, I need to do everything possible to keep it from getting larger or putting more pressure on the brainstem. Of course I am going to consult with other sources on this for second and third opinions. I was told that I could dive right after the treatment a year ago but of course this was before we knew I was going to experience many symptoms from tumor swelling. I decided to refrain from diving until the tumor stopped swelling and I was off the steroids (which is now....a year later). He also said to not strain myself while lifting weights because that puts additional pressure on the skull. Instead of lifting a heavier load I should be doing several reps at a more comfortable weight (which by the way is for muscle toning more than building).
The last thing kind of irritated me especially on a day like yesterday when I was feeling really down (NF2 has been robbing me of my passions away: diving, hiking, rollerblading, photography, the many things I wanted to do on my foreign travels). He wrote "You are doing very well. I know that there are many problems. But the BIG picture is that you are holding in there and hopefully this large tumor will decrease in size over the next few months."
Doing well. What is doing well...compared to what? I HAVE been waiting. Each time the extension gets longer and more things happen. It seems even though I was sick in the beginning I was somewhat better off. My vision was normal at that time, my balance was not the best but much better than n0w, I could see without everything bouncing around me, I did not have facial paralysis and could eat and drink normally, my eye was not in danger of being scratched or getting dried out. I never know what tomorrow is going to bring! It is horrible! From reading I may still end up in a wheelchair or going blind in one eye hence losing my ability to drive!
I just don't know what to say. This reminds me of a time when I was a shaving aide in a nursing home back when I was 17. I tried to be cheerful to all the patients. One day after I finished shaving a man, I said "Have a great day!" as I usually would. The man was in a wheelchair and very lonely. He got very angry and shook his fist at me while I was walking out the door. I was a little shocked. He yelled "OOOOOO You and your great day! You always say, Have a great day! What is so great about it here? You don't know what it is like to be here." At that brief moment I was struck. I really did not have any idea what it was like to be him or to be a patient in a nursing home. I could imagine but never quite fully comprehend how painful and humuliating that could be. I am not sure, but perhaps that is when I first started to awaken to empathy. But alas, that is a whole other story.
Now I am not as mad. I hope it lasts. I will have another head MRI and checkup in 3 months.
Wednesday, July 27, 2005
Waiting...Waiting.......Waiting..........
Monday was time for my followup MRI of the brain. Normally things go quite smoothly there and I generally fall asleep during the MRI. I was exceptionally tired Monday morning and ready to take a good snooze in the machine as I stayed up late the night prior.
As I was waiting out in the lobby, one of the ladies working there came out to inform me (in writing) that they were behind schedule and that my MRI would take place within 30-45 minutes. My concern regarding the push to a later time is that I had an appointment with my doctor afterward in the north part of town. I had no idea what the traffic was going to be like and if I could get there in time. So I asked them to call the NW Tumor Institute because I might be late. I was also concerned on whether the captioner for the appointment would be able to stay later as they generally have tight schedules and go from one appointment to the next which might be in totally different locations (such as Bellevue instead of Seattle). Yet I was assured that I would get there in time.
The selection of magazines was rather dry in the front so I walked to the patient waiting area down the hall where there was a plethora of magazines. I picked up an interesting looking Home and Garden magazine and thumbed through practically the whole thing. I was so tired I could barely keep my eyes open. I ended up dozing off in a very anti-posture promoting position. When I awoke it seemed as if I had been there for a long time.
I noticed somebody else getting the outfit for the MRI which just could not be right. I had been the first one there! To my left was a man sitting there waiting also. I purused through the magazine some more and then I just could not stand it anymore. I turned to him and told him I was deaf and asked if he had a watch. Unlike most hearing people, he knew exactly what to do. Instead of opening his mouth, he sh0wed me his watch an angle where I could definitely see it. It was noon! I had been there for an hour and a half and my doctor appointment was for 1 pm in another part of town!
In a panic I went down to the front desk and asked them what was going on and stated that I was definitely going to be late for my appointment. They called over to the doctor's office and told them I was going to be a half hour late. I went back to the reception area and the man that was waiting there with me was now dressed for his MRI.
When I finally got in there was a new radiology technician. He was nice but I was worried on whether he was going to be able to get a vein for the contrast die. In the past many people have had difficulties and other facilities have had to call in an anesthesiologist or send me to the chemo ward for an IV nurse. So knowing that nobody like that was available, I took a deep breath and kindly explained the whole procedure (what veins work best, which to avoid, size and type of needle to use, and to place a hot pad or water bottle on the hands).
It took him two tries. I thought he might of had it on the first try because he was there for quite a while. I think he was trying to be extra careful and gentle. I was disappointed when he moved to the other hand (Keep in mind that I can't hear anything and my head is locked in a cage position while I am lying flat on my back. Thus I can't see what is going on either. I must just sit, wait, and hope for the best.) I have learned to try to feel for the contrast dye going in as it is a little cold and I can generally smell the sterile solution. When I thought I could sense this, I gave him a thumb up and he gave me a thumb up back where I could see it.
Why was I lying down? The procedure is first to administer the MRI without the contrast dye. This is usually what people have done or normal protocol unless there is the signifcant presence of something such as brain tumors where the dye will show more detail. Therefore, the first 15 minutes of the MRI are without the dye and I definitely was able to take a good nap (seemed too short).
I must have been anxious from the needle episode because I had a hard time falling back asleep this time after the dye was added. For some reason the back of my damn head burned like fire! What is terrible is that I could not move my head to reposition it! This happened in one of my cyberknife treatments. The best way I can explain it is for those who have long hair but a sensitive scalp. Every once in a great while my scalp will get really sore from having my hair tied in a ponytail (which is the way I had it for cyberknife so they could fit the mask over my face).
Anyhow, my head must have been in a position it did not agree with and was too tightly pressed into the table. It was awful! I wanted to move and reposition so badly but I couldn't or we would have to redo the entire MRI over again. I sat there barely standing it and trying to remember not to move my head so I fidgeted with my hands instead. I was just about to raise my hand to get out of there when I felt the table being pulled from the giant donut machine. Ahh, freedom! Now I could cool off my head.
I got out of there at 1:15 pm and had 15 minutes to get to North Seattle where my appointment with the doctor was located. Fortunately I had no traffic and was able to get there by 1:30 pm.
Seeing as I have ranted on for so long about just getting the MRI, I will create another post about my doctor appointment (which goes along with the title but I did not have to physically wait to get into my appointment). This afternoon I have to go back to the MRI place for a followup MRI of my spine. My back and neck have been stiff/sore for at least a month and I need to get it checked out inside before I go to a chiropractor. My last spinal MRI was in January of this year and I do have a few tumors located there (last I knew there were small).
Until then, have a great day!
As I was waiting out in the lobby, one of the ladies working there came out to inform me (in writing) that they were behind schedule and that my MRI would take place within 30-45 minutes. My concern regarding the push to a later time is that I had an appointment with my doctor afterward in the north part of town. I had no idea what the traffic was going to be like and if I could get there in time. So I asked them to call the NW Tumor Institute because I might be late. I was also concerned on whether the captioner for the appointment would be able to stay later as they generally have tight schedules and go from one appointment to the next which might be in totally different locations (such as Bellevue instead of Seattle). Yet I was assured that I would get there in time.
The selection of magazines was rather dry in the front so I walked to the patient waiting area down the hall where there was a plethora of magazines. I picked up an interesting looking Home and Garden magazine and thumbed through practically the whole thing. I was so tired I could barely keep my eyes open. I ended up dozing off in a very anti-posture promoting position. When I awoke it seemed as if I had been there for a long time.
I noticed somebody else getting the outfit for the MRI which just could not be right. I had been the first one there! To my left was a man sitting there waiting also. I purused through the magazine some more and then I just could not stand it anymore. I turned to him and told him I was deaf and asked if he had a watch. Unlike most hearing people, he knew exactly what to do. Instead of opening his mouth, he sh0wed me his watch an angle where I could definitely see it. It was noon! I had been there for an hour and a half and my doctor appointment was for 1 pm in another part of town!
In a panic I went down to the front desk and asked them what was going on and stated that I was definitely going to be late for my appointment. They called over to the doctor's office and told them I was going to be a half hour late. I went back to the reception area and the man that was waiting there with me was now dressed for his MRI.
When I finally got in there was a new radiology technician. He was nice but I was worried on whether he was going to be able to get a vein for the contrast die. In the past many people have had difficulties and other facilities have had to call in an anesthesiologist or send me to the chemo ward for an IV nurse. So knowing that nobody like that was available, I took a deep breath and kindly explained the whole procedure (what veins work best, which to avoid, size and type of needle to use, and to place a hot pad or water bottle on the hands).
It took him two tries. I thought he might of had it on the first try because he was there for quite a while. I think he was trying to be extra careful and gentle. I was disappointed when he moved to the other hand (Keep in mind that I can't hear anything and my head is locked in a cage position while I am lying flat on my back. Thus I can't see what is going on either. I must just sit, wait, and hope for the best.) I have learned to try to feel for the contrast dye going in as it is a little cold and I can generally smell the sterile solution. When I thought I could sense this, I gave him a thumb up and he gave me a thumb up back where I could see it.
Why was I lying down? The procedure is first to administer the MRI without the contrast dye. This is usually what people have done or normal protocol unless there is the signifcant presence of something such as brain tumors where the dye will show more detail. Therefore, the first 15 minutes of the MRI are without the dye and I definitely was able to take a good nap (seemed too short).
I must have been anxious from the needle episode because I had a hard time falling back asleep this time after the dye was added. For some reason the back of my damn head burned like fire! What is terrible is that I could not move my head to reposition it! This happened in one of my cyberknife treatments. The best way I can explain it is for those who have long hair but a sensitive scalp. Every once in a great while my scalp will get really sore from having my hair tied in a ponytail (which is the way I had it for cyberknife so they could fit the mask over my face).
Anyhow, my head must have been in a position it did not agree with and was too tightly pressed into the table. It was awful! I wanted to move and reposition so badly but I couldn't or we would have to redo the entire MRI over again. I sat there barely standing it and trying to remember not to move my head so I fidgeted with my hands instead. I was just about to raise my hand to get out of there when I felt the table being pulled from the giant donut machine. Ahh, freedom! Now I could cool off my head.
I got out of there at 1:15 pm and had 15 minutes to get to North Seattle where my appointment with the doctor was located. Fortunately I had no traffic and was able to get there by 1:30 pm.
Seeing as I have ranted on for so long about just getting the MRI, I will create another post about my doctor appointment (which goes along with the title but I did not have to physically wait to get into my appointment). This afternoon I have to go back to the MRI place for a followup MRI of my spine. My back and neck have been stiff/sore for at least a month and I need to get it checked out inside before I go to a chiropractor. My last spinal MRI was in January of this year and I do have a few tumors located there (last I knew there were small).
Until then, have a great day!
Monday, July 25, 2005
Rural Physical Therapy For The Vestibular Challenged
Or RURAL YOGA if you will!
Here I am in shorts and a t-shirt picking blackberries at dusk. Yes the sun had already set and there was faint light just enough left to distinguish the black color of the berries from the green ones.
Fortunately King County was kind enough recently to cut back the brush on the side of the trail. "Great no problem! I should be able to reach a few ripes berries for my tupperware containier before there is absolutely no sunlight left." Although the brush was somewhat cut back it was still a challenge to work my way in there to the closest ripe berries without scraping my legs all up or crashing into the bush from a bramble that grabbed my foot. I had pants with me in a small backpack but there was no time for changing. I had to get as many berries as I could before the sun was completely gone.
I did take the time however to put on an oversized t-shirt over my sweaty tanktop so I could keep the scratches on my arms to a minimum. I had to really stretch to reach some of those upper berries. Then I decided to just go from underneath and contort my body into somewhat of a light squat so I could access those big black jewels hidden beneath the foilage.
In my attempts to carefully reach in without scratching my hands and arms to hell, a bramble snatched up my long hair that I had tied back. So here I am in this partial squat postion, one arm in the middle of the bush, the other holding the container, and my head in a firm grasp by the blackberry bramble jetting out above me. During this time, I had to carefully try to balance between everything without falling completely in the bush and scraping myself up with the vile thorns and spilling my beloved prize all over the ground.
What to do..what to do???? Hmmn. Carefully I finished retreiving the beauties I went in after while the bush tugged ferociously at my hair. After my berry retreival, I used the same hand to carefully feel a section of the bramble that did not have thorns and then pulled the bush out of my hair.
Ahh but those berries were too tempting so I did it again! This time my hair was really stuck so I had to practically pull my hair out to be released from the bush.
It was time to delve deeper into the bush and get at those far reaching berries as I picked all the most accessible berries in a pair of shorts. I sat in the hay on the other side of the trail and pulled my jeans out of the pack. Jake rolled in the hay next to me. But time was of the essence! There was no time to put the pants on perfectly so I pulled them on over my shorts, half zipped them, and went back to work. Thus my pants were kind of falling off but it did not matter if I did not move around too much. I just needed to get into a couple spots and and do the yoga berry picking position.
I could get much further into the bush with a pair of jeans on but this also made my footing less stable as the brambles seemed to grab at my feet. I had to be careful not to trip. Ah berry heaven! I looked up at the plethora of berries which was now surrounded by swarms of mosquitos! Do I dare reach up there? I did not want to invite them down for a visit.
I tried to find as berries as I could that were not surrounded by the swarms but alas my sweat drenched body from jogging the trails earlier was just too enticing for them. I was beginning to smell yummier than the berries! Fortunately I had pants on so my legs were not getting bit up but my exposed forearms and neck were!
Remember my method......one hand holding the container, one hand in the bush picking, and a firm stance (feet spread apart for my footing). Any sharp manuevers or quick turn of the head would send me crashing into the thorny bush and leave me a bloody mess (literally!). Therefore, I had to let some of the little buggers eat me! After I got my berry, I would try to grab and kill the nasty buggers that landed on me.
It was getting too dark to distinguish the color of any berries under the leaves or in the darker area so I was left with the decision to reach the berries in the remaining light (where the swarm happened to be). Now for those of you who know what I have been through lately this was an amazing feet to even maintain any sense of balance given the situation in the approaching darkness!
I kept my feet stable and bravely reached toward the sky where there was some beautiful black gems. I tried to pick as many as I could. I felt the sqeeters sucking my neck and swarming around my face. It became too much for me and I was overpowered. It was not enough to make a pie but there is a nice amount for good eating. I decided it was time to get the heck out of there before I became engulfed by the bush and bugs!
What can I say???? I am like a bear. I love my blackberries!
Here I am in shorts and a t-shirt picking blackberries at dusk. Yes the sun had already set and there was faint light just enough left to distinguish the black color of the berries from the green ones.
Fortunately King County was kind enough recently to cut back the brush on the side of the trail. "Great no problem! I should be able to reach a few ripes berries for my tupperware containier before there is absolutely no sunlight left." Although the brush was somewhat cut back it was still a challenge to work my way in there to the closest ripe berries without scraping my legs all up or crashing into the bush from a bramble that grabbed my foot. I had pants with me in a small backpack but there was no time for changing. I had to get as many berries as I could before the sun was completely gone.
I did take the time however to put on an oversized t-shirt over my sweaty tanktop so I could keep the scratches on my arms to a minimum. I had to really stretch to reach some of those upper berries. Then I decided to just go from underneath and contort my body into somewhat of a light squat so I could access those big black jewels hidden beneath the foilage.
In my attempts to carefully reach in without scratching my hands and arms to hell, a bramble snatched up my long hair that I had tied back. So here I am in this partial squat postion, one arm in the middle of the bush, the other holding the container, and my head in a firm grasp by the blackberry bramble jetting out above me. During this time, I had to carefully try to balance between everything without falling completely in the bush and scraping myself up with the vile thorns and spilling my beloved prize all over the ground.
What to do..what to do???? Hmmn. Carefully I finished retreiving the beauties I went in after while the bush tugged ferociously at my hair. After my berry retreival, I used the same hand to carefully feel a section of the bramble that did not have thorns and then pulled the bush out of my hair.
Ahh but those berries were too tempting so I did it again! This time my hair was really stuck so I had to practically pull my hair out to be released from the bush.
It was time to delve deeper into the bush and get at those far reaching berries as I picked all the most accessible berries in a pair of shorts. I sat in the hay on the other side of the trail and pulled my jeans out of the pack. Jake rolled in the hay next to me. But time was of the essence! There was no time to put the pants on perfectly so I pulled them on over my shorts, half zipped them, and went back to work. Thus my pants were kind of falling off but it did not matter if I did not move around too much. I just needed to get into a couple spots and and do the yoga berry picking position.
I could get much further into the bush with a pair of jeans on but this also made my footing less stable as the brambles seemed to grab at my feet. I had to be careful not to trip. Ah berry heaven! I looked up at the plethora of berries which was now surrounded by swarms of mosquitos! Do I dare reach up there? I did not want to invite them down for a visit.
I tried to find as berries as I could that were not surrounded by the swarms but alas my sweat drenched body from jogging the trails earlier was just too enticing for them. I was beginning to smell yummier than the berries! Fortunately I had pants on so my legs were not getting bit up but my exposed forearms and neck were!
Remember my method......one hand holding the container, one hand in the bush picking, and a firm stance (feet spread apart for my footing). Any sharp manuevers or quick turn of the head would send me crashing into the thorny bush and leave me a bloody mess (literally!). Therefore, I had to let some of the little buggers eat me! After I got my berry, I would try to grab and kill the nasty buggers that landed on me.
It was getting too dark to distinguish the color of any berries under the leaves or in the darker area so I was left with the decision to reach the berries in the remaining light (where the swarm happened to be). Now for those of you who know what I have been through lately this was an amazing feet to even maintain any sense of balance given the situation in the approaching darkness!
I kept my feet stable and bravely reached toward the sky where there was some beautiful black gems. I tried to pick as many as I could. I felt the sqeeters sucking my neck and swarming around my face. It became too much for me and I was overpowered. It was not enough to make a pie but there is a nice amount for good eating. I decided it was time to get the heck out of there before I became engulfed by the bush and bugs!
What can I say???? I am like a bear. I love my blackberries!
Wednesday, July 20, 2005
Truly Madly Deeply
Saturday July 16th was our 5th wedding anniversary! It is hard to fathom that 5 years have already gone by. I was diagnosed with NF2 just the year prior (in July of 1999) so it was a very trying year to plan a wedding in the midst of all the unknowns of what was going to happen down the road and coming to grips with the realization that I did not just have one brain tumor but several (quote by the radiologist "too numerous to count"). We had been told that year that the chance was very high that I would become deaf (the projection was much sooner than it had happened.....originally we were told 1-2 years but I was hard of hearing for about 5 years).
I recall hating the thought of losing my hearing and someone just mentioning the idea of learning sign language brought uncontrollable tears to my eyes. You see, for the NF2 person it is not just the idea of becoming completely deaf that is so tramatizing. Many people lose hearing due to various reasons/conditions. But for the person and family of someone with NF2, the digression and loss of hearing is a reminder of what is really going on inside the head. You try to do all these things to keep busy and avoid that fact the there is a scary but very real unknown that exists everyday of your life.
For those who know me very well and who knew me as a hearing person, music was a very important part of my everyday living. As I mentioned in an earlier post, it was quite common for me to fall asleep listening to music, to be wearing a set of headphones, and to memorize the lyrics so I could sing along with songs. I spent a great deal of time picking out songs for our wedding which kind of turned into a small fiasco as the DJ for our wedding really turned out to be a doofus!
Fortunately he did have the one song that meant alot to me and that I wanted to play for our first dance which we regard as our "wedding song". If you know us really well you will understand the lyrics and why the words are meaningful to us.
Harley was very much aware of the situation and being the spouse of a person with NF2 I think is the hardest position to be in. I know when I had cancer it was probably the most emotionally difficult for my family. Knowing all this and not knowing exactly what the future was going to bring, he took a tremendous leap of faith and showed his enormous sense of courage and love.
Harley, thank you for everything you are, have been, and haven given me. I love you very much and I don't know how I would have gotten through all of this without you. You have made my dreams come true.
Truly Madly Deeply
I recall hating the thought of losing my hearing and someone just mentioning the idea of learning sign language brought uncontrollable tears to my eyes. You see, for the NF2 person it is not just the idea of becoming completely deaf that is so tramatizing. Many people lose hearing due to various reasons/conditions. But for the person and family of someone with NF2, the digression and loss of hearing is a reminder of what is really going on inside the head. You try to do all these things to keep busy and avoid that fact the there is a scary but very real unknown that exists everyday of your life.
For those who know me very well and who knew me as a hearing person, music was a very important part of my everyday living. As I mentioned in an earlier post, it was quite common for me to fall asleep listening to music, to be wearing a set of headphones, and to memorize the lyrics so I could sing along with songs. I spent a great deal of time picking out songs for our wedding which kind of turned into a small fiasco as the DJ for our wedding really turned out to be a doofus!
Fortunately he did have the one song that meant alot to me and that I wanted to play for our first dance which we regard as our "wedding song". If you know us really well you will understand the lyrics and why the words are meaningful to us.
Harley was very much aware of the situation and being the spouse of a person with NF2 I think is the hardest position to be in. I know when I had cancer it was probably the most emotionally difficult for my family. Knowing all this and not knowing exactly what the future was going to bring, he took a tremendous leap of faith and showed his enormous sense of courage and love.
Harley, thank you for everything you are, have been, and haven given me. I love you very much and I don't know how I would have gotten through all of this without you. You have made my dreams come true.
Truly Madly Deeply
I'll be your dream
I'll be your wish, I'll be your fantasy
I'll be your hope, I'll be your love
Be everything that you need
I'll love you more with every breath
Truly Madly Deeply Do
I will be strong, I will be faithful
Coz I'm counting on
A new beginning
A reason for living
A deeper meaning (yeah)
I want to stand with you on a mountain
I want to bathe with you in the sea
I want to lay like this forever
Until the sky falls down on me
And when the stars are shining
Brightly in the velvet sky
I'll make a wish send it to heaven
Then make you want to cry
The tears of joy for all the
Pleasure in the certainty
That we're surrounded
By the comfort and protection of
The highest powers
In lonely hours
The tears devour you
I want to stand with you on a mountain
I want to bathe with you in the sea
I want to lay like this forever
Until the sky falls down on me
Oh can you see it baby?
You don't have to close your eyes
Coz it's standing right before you
All that you need will surely come
I'll be your dream
I'll be your wish, I'll be your fantasy
I'll be your hope, I'll be your l0ve
Be everything that you need
I'll love you more with every breath
Truly Madly Deeply Do
I want to stand with you on a mountain
I want to bathe with you in the sea
I want to lay like this forever
Until the sky falls down on me
- Savage Garden 1997
Thursday, July 14, 2005
It is an interesting phenomena
The brain is a marvelous wonder.
This afternoon I am sitting on the deck eating lunch in the sun while the dogs nap. I look out and see the flowers in their pots and trees of various kinds completely surrounding me. The sky is a deep baby blue and the sun sparkling on the trees creates a soft and peaceful image. Ever so often there is a slight breeze that brushes my face and gently tingles the leaves on the deciduous trees.
Without realizing it, my mind has subconsciously created a sound backdrop of the gentle breeze blowing through the trees and summer birds chirping their songs. To me the setting is quite serene and I am enraptured in the beauty of contentment.
After I finish my lunch and the article in the newspaper, I stop to look around. At that point I realize my brain has created for me "hearing" even though I can't hear a sound. I tap my foot on the wood of the deck and my fingers on the glass table. Even though I can't hear it I can feel the vibration and yet again my brain has filled in these gaps.
While reminising about when we moved into the house, I recall the loud buzz and hum of the motorcyles that drove along the road past our house as it is a popular riding route. I can no longer hear them so it is quite peaceful to me here. I have no idea if the cars or motorcycles on the road are have been loud or have even been there.
Yet it is interesting that my brain has chosen to create the sound of birds chirping and the gentle wind. It almost reminds me of a meditative tape I owned as a hearing person. It is quite common for this same "creation of sound" to be played by my brain whenever I am in the outdoors in a more secluded setting. Often when I go to a park, I will hear children whether they are there or not because I was accustomed to their laughter while visiting parks when I worked for the department of agriculture.
I find this phenomena rather amazing. It is similiar to the power of smell. Often times people can totally be taken back into a memory by a specific scent. This has happened to me many times also.....especially when moving from the midwest to the west coast. The smell of neoprene or fresh sea salt will bring me back to several dives I have made in my lifetime.
It makes me wonder though. Will this phenomena continue throughout time or will it gradually slip away and will I forget? I have only been deaf for nearly a year (this friday or saturday will be a year of complete silence).
This afternoon I am sitting on the deck eating lunch in the sun while the dogs nap. I look out and see the flowers in their pots and trees of various kinds completely surrounding me. The sky is a deep baby blue and the sun sparkling on the trees creates a soft and peaceful image. Ever so often there is a slight breeze that brushes my face and gently tingles the leaves on the deciduous trees.
Without realizing it, my mind has subconsciously created a sound backdrop of the gentle breeze blowing through the trees and summer birds chirping their songs. To me the setting is quite serene and I am enraptured in the beauty of contentment.
After I finish my lunch and the article in the newspaper, I stop to look around. At that point I realize my brain has created for me "hearing" even though I can't hear a sound. I tap my foot on the wood of the deck and my fingers on the glass table. Even though I can't hear it I can feel the vibration and yet again my brain has filled in these gaps.
While reminising about when we moved into the house, I recall the loud buzz and hum of the motorcyles that drove along the road past our house as it is a popular riding route. I can no longer hear them so it is quite peaceful to me here. I have no idea if the cars or motorcycles on the road are have been loud or have even been there.
Yet it is interesting that my brain has chosen to create the sound of birds chirping and the gentle wind. It almost reminds me of a meditative tape I owned as a hearing person. It is quite common for this same "creation of sound" to be played by my brain whenever I am in the outdoors in a more secluded setting. Often when I go to a park, I will hear children whether they are there or not because I was accustomed to their laughter while visiting parks when I worked for the department of agriculture.
I find this phenomena rather amazing. It is similiar to the power of smell. Often times people can totally be taken back into a memory by a specific scent. This has happened to me many times also.....especially when moving from the midwest to the west coast. The smell of neoprene or fresh sea salt will bring me back to several dives I have made in my lifetime.
It makes me wonder though. Will this phenomena continue throughout time or will it gradually slip away and will I forget? I have only been deaf for nearly a year (this friday or saturday will be a year of complete silence).
Tuesday, July 05, 2005
Songs on my mind during the waking hours
Here are a few of the tunes that have popped into my head for no apparent reason over the past week or so during the hours that I am awake.
"Spirit In the Sky" by Norman Greenbaum
"Mrs. Robinson" by Simon and Garfunkle
"Angel" by Aerosmith
"Cheeseburger in Paradise" by Jimmy Buffet
"Volcano" by Jimmy Buffet
"Son of a Son of a Sailor" by Jimmy Buffet
"God Blessed Texas" by Little Texas
"Fields of Gold" by Sting
"Spirit In the Sky" by Norman Greenbaum
"Mrs. Robinson" by Simon and Garfunkle
"Angel" by Aerosmith
"Cheeseburger in Paradise" by Jimmy Buffet
"Volcano" by Jimmy Buffet
"Son of a Son of a Sailor" by Jimmy Buffet
"God Blessed Texas" by Little Texas
"Fields of Gold" by Sting
But it seemed so real!
Last night I awoke in the middle of night and was stricken with an overwhelming grief again until who knows what time I fell asleep.
When I did fall asleep though I had an amazing dream. I dreamed that I was listening to the song "Faithfully" by Journey. When I was a teen it was one of my all time favorite songs that I would repeatedly play over and over again on a cassette tape. My favorite part was the piano solo that I just could not get enough of. As a matter of fact, piano solos in ballads were my favorite instrument to listen to. I had wanted to learn how to play the piano for a long time and had put it on my list of things to do when I turned older (about now actually).
In my dream I must have been sleeping because I was in the darkness. While growing up from my pre-teens into my early 20s I regularily listened to music when I went to bed. I would play the stereo all night. In the dream I must have been back to that place. The music seemed so real and so passionate. I didn't want it to stop. Then when nearing the end of the song something happened. Some strange tune started to drown out the song I had so cherished. I tried to block it out but the song kept slipping further and further away.
I am not sure what really happened. I was in a state I did not want to leave. I remember Harley waking me up to sign something to me this morning so I am not sure if that was the interuption. The weird thing is that I thought he was telling me something and it took me until nearly noon to figure out that he must have signed something.
It is often when somebody signs that I have actually imagined a voice for them. Seeing as I hear no sound at all my brain will not accept that. It creates voices for everyone.....even people who do not speak have a voice in my brain. Sometimes it gets confusing and I think someone said something to me when they actually signed it. I have to think about it for a little while to bring myself back to reality.
There have been other dreams I have had over the past months where I was riding my motorcycle, diving, biking, and rollerblading. They all feel very real and remind me of a story Christopher Reeve wrote in the beginning of his book. He wrote about a man who became a quadreplegic. Every night the man would dream that he was out sailing on his boat and it became so real that he would awaken with his hair all wet from water he thought was the spray of the sea water.
When I did fall asleep though I had an amazing dream. I dreamed that I was listening to the song "Faithfully" by Journey. When I was a teen it was one of my all time favorite songs that I would repeatedly play over and over again on a cassette tape. My favorite part was the piano solo that I just could not get enough of. As a matter of fact, piano solos in ballads were my favorite instrument to listen to. I had wanted to learn how to play the piano for a long time and had put it on my list of things to do when I turned older (about now actually).
In my dream I must have been sleeping because I was in the darkness. While growing up from my pre-teens into my early 20s I regularily listened to music when I went to bed. I would play the stereo all night. In the dream I must have been back to that place. The music seemed so real and so passionate. I didn't want it to stop. Then when nearing the end of the song something happened. Some strange tune started to drown out the song I had so cherished. I tried to block it out but the song kept slipping further and further away.
I am not sure what really happened. I was in a state I did not want to leave. I remember Harley waking me up to sign something to me this morning so I am not sure if that was the interuption. The weird thing is that I thought he was telling me something and it took me until nearly noon to figure out that he must have signed something.
It is often when somebody signs that I have actually imagined a voice for them. Seeing as I hear no sound at all my brain will not accept that. It creates voices for everyone.....even people who do not speak have a voice in my brain. Sometimes it gets confusing and I think someone said something to me when they actually signed it. I have to think about it for a little while to bring myself back to reality.
There have been other dreams I have had over the past months where I was riding my motorcycle, diving, biking, and rollerblading. They all feel very real and remind me of a story Christopher Reeve wrote in the beginning of his book. He wrote about a man who became a quadreplegic. Every night the man would dream that he was out sailing on his boat and it became so real that he would awaken with his hair all wet from water he thought was the spray of the sea water.
Monday, June 27, 2005
Do What You Gotta Do
Back when I was 21 years old and had cancer I had an instructor tell me "Do What You Gotta Do" in response to my need to undergo chemotherapy and miss class. I was not sure how to take that at first and it seemed almost an uncaring attitude. Later I had someone tell me the same phrase. The meaning never really hit home for me until I deeply pondered it a couple weeks ago while trying to battle the insuing depression of the situation at times.
There was a particular day when it just seemed like everything was caving in. All these events relating to NF2 were coming to a head, my dog was recooperating from knee surgery which was not cheap, she had some lesions which I feared may have been ringworm (but later found out it was a coon bite), mice had snuck through a vent under the deck and a hole under the kitchen sink making a mess in my cabinets, and so forth. As if the things I was dealing with the NF2 were'nt enough. I began to get angry and ask God "Why are you letting all this happen to me???" My husband seeing my frustration as I was taking a great deal of it out on him said "Becky, life is going to go on for you. It does not stop just because you have NF2. Lots of people have these things happen to them" (like mice and ringworm).
Then a light bulb seemed to click on and I more deeply understood the phrase I had been pondering a week earlier. He was right. None of these other things called "life" will cease to exist due to my circumstances. I learned when I was young that when you fall down you get back up, brush yourself off, and go on. In his autobiography titled "Still Me", Christopher Reeve would get up and cry for 20 minutes each morning to feel sorry for himself. He would allow that much time to grieve every day. When he was finished he would put his sorrow away and move forward with the rest of the day.
I have reflected often on what his life must have been like after the accident. While walking the other day I thought, well I might not be a hot dog anymore on rollerblades or waterskiis but I am able to move my limbs and enjoy this walk with my dog. I thought about what his family went through as I peered into the creek. His one wish was that he would be able to hug his son. A simple thing that we all take so much for granted. I can move my arms and hug anybody I wanted but it was reading about his quadreplegia that made me realize what a gift I had been granted.......that I can still embrace my husband and run my fingers through his hair. Christopher Reeve was never again able to do that for his wife.
So today after the dentist I accidentally hit a curb I could not see in the rain while making a turn. My tire had instantly gone flat. I pulled into a parking lot and wondered "Now what am I going to do?". After all, life must continue on.
I walked over to a Kinkos and had an employee call my husband to explain the situation and for him to please come down to meet me. I had not changed a tire since I worked for the WSDA 5 years ago and I was not as strong as I used to be or had the balance. I returned to the car and proceeded to go through the steps in my memory.
Everything went well except I could not loosen the dang lugnuts. I did not want to put too much into it where I could injure myself from falling or rolling over or knocking the car down. Luckily it had stopped raining. I continued to work on the flat while MANY people drove right by me staring or walked back to their cars from the store. It is possible that some may have asked me from their car or behind me if I needed help but I could not hear them and did not respond.
While all this was happening I thought about how when I worked for the MDA and the WSDA, several people would stop to ask if I needed help when I actually had it all under control. It was kind of funny and I admit I felt slightly sorry for myself because when I needed help nobody was really coming to my aide. I began to wonder if I was turning the lugnuts the wrong way. I pulled the manual from the glove box and read the instructions on changing a tire. I had done everything right. Disappointed I returned to my flat tire and the lugnuts.
At that moment a very nice man came up to me where I could see him and I read that he asked me if I needed help. I responded that I actually did and only needed him to loosen the lugnuts for me because I did not have enough strength. When he did so, I said I could handle the rest but he insisted upon helping me complete the process. After the tire was changed I thanked him and said that I could take care of the car jack. While breaking down the car jack a nice hispanic young man came over to see if I needed any help. I assured him that I had it all taken care of but thanked him for stopping.
Later when Harley picked me up at the tire and brake shop he was very proud of me. Even though I was not strong enough to release the lugnuts I was pretty proud of myself too as I continued on and tried to solve the situation. You have to admit that as silly as it may sound, there are many people out there that have no clue where to begin to change a tire. I was just bestowed another priveledge that at first glance would be easy to overlook. First of all, I still have the ability to drive which is a rather HUGE freedom. Second, I had the ability to solve the problem despite the obstacles I now face (deafness....meaning I cannot jump on a cellphone or payphone to call for help and it can be complicated trying to get help when you can't hear; plus my balance and strength are poor right now and I was unsure about changing the tire myself).
The morale of the story is that no matter what your grief is, life is going to go on with or without you and if you choose to be proactive and a part of it you must "do what you gotta do."
There was a particular day when it just seemed like everything was caving in. All these events relating to NF2 were coming to a head, my dog was recooperating from knee surgery which was not cheap, she had some lesions which I feared may have been ringworm (but later found out it was a coon bite), mice had snuck through a vent under the deck and a hole under the kitchen sink making a mess in my cabinets, and so forth. As if the things I was dealing with the NF2 were'nt enough. I began to get angry and ask God "Why are you letting all this happen to me???" My husband seeing my frustration as I was taking a great deal of it out on him said "Becky, life is going to go on for you. It does not stop just because you have NF2. Lots of people have these things happen to them" (like mice and ringworm).
Then a light bulb seemed to click on and I more deeply understood the phrase I had been pondering a week earlier. He was right. None of these other things called "life" will cease to exist due to my circumstances. I learned when I was young that when you fall down you get back up, brush yourself off, and go on. In his autobiography titled "Still Me", Christopher Reeve would get up and cry for 20 minutes each morning to feel sorry for himself. He would allow that much time to grieve every day. When he was finished he would put his sorrow away and move forward with the rest of the day.
I have reflected often on what his life must have been like after the accident. While walking the other day I thought, well I might not be a hot dog anymore on rollerblades or waterskiis but I am able to move my limbs and enjoy this walk with my dog. I thought about what his family went through as I peered into the creek. His one wish was that he would be able to hug his son. A simple thing that we all take so much for granted. I can move my arms and hug anybody I wanted but it was reading about his quadreplegia that made me realize what a gift I had been granted.......that I can still embrace my husband and run my fingers through his hair. Christopher Reeve was never again able to do that for his wife.
So today after the dentist I accidentally hit a curb I could not see in the rain while making a turn. My tire had instantly gone flat. I pulled into a parking lot and wondered "Now what am I going to do?". After all, life must continue on.
I walked over to a Kinkos and had an employee call my husband to explain the situation and for him to please come down to meet me. I had not changed a tire since I worked for the WSDA 5 years ago and I was not as strong as I used to be or had the balance. I returned to the car and proceeded to go through the steps in my memory.
Everything went well except I could not loosen the dang lugnuts. I did not want to put too much into it where I could injure myself from falling or rolling over or knocking the car down. Luckily it had stopped raining. I continued to work on the flat while MANY people drove right by me staring or walked back to their cars from the store. It is possible that some may have asked me from their car or behind me if I needed help but I could not hear them and did not respond.
While all this was happening I thought about how when I worked for the MDA and the WSDA, several people would stop to ask if I needed help when I actually had it all under control. It was kind of funny and I admit I felt slightly sorry for myself because when I needed help nobody was really coming to my aide. I began to wonder if I was turning the lugnuts the wrong way. I pulled the manual from the glove box and read the instructions on changing a tire. I had done everything right. Disappointed I returned to my flat tire and the lugnuts.
At that moment a very nice man came up to me where I could see him and I read that he asked me if I needed help. I responded that I actually did and only needed him to loosen the lugnuts for me because I did not have enough strength. When he did so, I said I could handle the rest but he insisted upon helping me complete the process. After the tire was changed I thanked him and said that I could take care of the car jack. While breaking down the car jack a nice hispanic young man came over to see if I needed any help. I assured him that I had it all taken care of but thanked him for stopping.
Later when Harley picked me up at the tire and brake shop he was very proud of me. Even though I was not strong enough to release the lugnuts I was pretty proud of myself too as I continued on and tried to solve the situation. You have to admit that as silly as it may sound, there are many people out there that have no clue where to begin to change a tire. I was just bestowed another priveledge that at first glance would be easy to overlook. First of all, I still have the ability to drive which is a rather HUGE freedom. Second, I had the ability to solve the problem despite the obstacles I now face (deafness....meaning I cannot jump on a cellphone or payphone to call for help and it can be complicated trying to get help when you can't hear; plus my balance and strength are poor right now and I was unsure about changing the tire myself).
The morale of the story is that no matter what your grief is, life is going to go on with or without you and if you choose to be proactive and a part of it you must "do what you gotta do."
Saturday, June 25, 2005
What is a Hero?
"I think a hero is an ordinary individual who finds strength to persevere and endure in spite of overwhelming obstacles."
- Christopher Reeve
- Christopher Reeve
Wednesday, June 22, 2005
Ideal Nightly Regimen
Teeth:
After brushing rinse mouth thoroughly several times while holding my lips shut to get all the food out that has become stuck in my teeth.
Floss all the teeth while paying special attention to the gaps that have formed in my upper back molars.
Rinse mouth continuously with water to get out additional food.
Use Prevident (prescription flouride) to rinse mouth for 30 seconds.
After guzzling lots of water due to dry mouth and thirst, apply a thick gel substance to my gums (fake saliva) to try to protect my mouth for the night.
Eyes:
Wash face of course.
Apply Refresh Gel Drops to both eyes (seems to glue my left eye shut by morning)
Ideally I should probably tape the right eye shut but I don't.
Feet:
Apply dry skin lotion (called Heal Rescue) to all the thousands of cracks in my callused feet.
Put on socks and wear to bed to lock in moisture.
I have to admit I get kind of lazy. First of all, I usually watch a netflix in the evening but end up falling asleep from my medication and I get just plain tired out of trying to keep up with reading the captioning. I wake back up between midnight and 1:30 am to do my regimen. My mouth tastes terrible by then and I have to brush my teeth for relief. Plus I do not like the fact that I am spending oodles of money to repair them. Sometimes I am too lazy to wash my face after the whole mouth ordeal and I just put the drops in. Now that summer is here I go barefoot alot and don't pay as much attention to my feet until they get really bad.
After brushing rinse mouth thoroughly several times while holding my lips shut to get all the food out that has become stuck in my teeth.
Floss all the teeth while paying special attention to the gaps that have formed in my upper back molars.
Rinse mouth continuously with water to get out additional food.
Use Prevident (prescription flouride) to rinse mouth for 30 seconds.
After guzzling lots of water due to dry mouth and thirst, apply a thick gel substance to my gums (fake saliva) to try to protect my mouth for the night.
Eyes:
Wash face of course.
Apply Refresh Gel Drops to both eyes (seems to glue my left eye shut by morning)
Ideally I should probably tape the right eye shut but I don't.
Feet:
Apply dry skin lotion (called Heal Rescue) to all the thousands of cracks in my callused feet.
Put on socks and wear to bed to lock in moisture.
I have to admit I get kind of lazy. First of all, I usually watch a netflix in the evening but end up falling asleep from my medication and I get just plain tired out of trying to keep up with reading the captioning. I wake back up between midnight and 1:30 am to do my regimen. My mouth tastes terrible by then and I have to brush my teeth for relief. Plus I do not like the fact that I am spending oodles of money to repair them. Sometimes I am too lazy to wash my face after the whole mouth ordeal and I just put the drops in. Now that summer is here I go barefoot alot and don't pay as much attention to my feet until they get really bad.
Saturday, June 18, 2005
"I get by with a little help from my friends" - Beattles
Today turned out to be a gorgeous day and two of my good friends I have met through learning ASL (American Sign Language) and I went to the annual Deaf and Deaf/Blind picnic in Seattle. We met one of our new friends there who just moved here from the east coast. The food was great! It seemed people at all of our dishes.
Afterwards, we decided to take a walk down by the beach (for those who know the area, I am referring to the fantastic Lincoln Park of Seattle). The park was packed and all the shelters were taken. At the beach there were people swimming, children playing in the water and on logs, people walking their dogs, and some on bicycles.
Even though the path was flat, I was acutely aware of my difficulty negotiating my balance. At the picnic, a man has asked me in sign if I was ok. There was no alcohol there so I do not think he misinterpreted me as being drunk. He seemed to understand when I explained briefly why I might have been traversing from tree to tree and grasping on to each one.
As I walked I could not help but think of when I lived in the area and had rollerbladed and ran along the path with full freedom of mobility. Reminiscing about this made me sad. I could not help but think about my youth just only a year or so ago. I tried to block it out of my mind and instead focused on walking the path.
Then we decided to sit on a log for a short bit to admire the mountains painted perfectly behind the sea and the sailboats bobbing on their moorings near the ferry dock. It was sort of a challenge to navigate safely over to the logs so I picked one closeby.
Our one friend grew up on the Monterey Coast and was overjoyed to play on the beach again just as though she were a kid again. I watched her excitedly run to the water. At the same time, I noticed two small children dancing from driftwood log to another and I found myself entranced. I thought of the days when all of this was thrilling for me and jumping among the logs or rocks was an easy skill.
I turned my focus back to my friends playing along the shore. The waves gently pushed forward the bright green sea lettuce that was so familiar to me. In the sun, the wet pebbles glimmered in a multitude of colors against the grey brown sand. As I looked into the waves and smelled the sea salt all I could think about were the days not so very long ago of diving on the shores of Puget Sound and my love of the beach.
It was all exhilerating yet utterly overwhelming. It seemed everywhere I looked was a reminder of who I used to be and what I loved so much about life. My heart was crushed! It was as though someone just delivered the harsh blow that my husband or one of my loved ones was instantly killed in a devastating crash! I became crippled in a wave of emotion I could no longer escape from.
Now I know how my dear friend's mother felt when I went to visit her family shortly after her death. Anne Marie was killed instantly in a head on collision just a few days before Christmas. I thought it might make her mother feel better if I brought her a nice bouquet of flowers. The moment she saw me and the flowers in my hand she broke out into a fit of tears. I felt horrible ...like I did something to offend her. I later discovered that Anne Marie regularily brought her mom a bouquet of fresh flowers when she came home from college.
At the moment the same feeling of grief overcame me. I tried very hard to hold it back because I did not want to ruin the good time my friends were having. The more I held it in, the worse it became. Since I can no longer shed tears or cry I started hyperventilating hysterically. My friends inquired if I was ok and of course I responded that I was. I tried my darndest to hide it but it got to the point that I could not even speak and it was becoming difficult to breath.
I did not want them to leave the shore but of course they did. I was not even capable of explaining what was happening. They came over to where I sat on the log and helped me get into the rythym of taking slow deep breaths. I had to concentrate extremely hard to do so. Everytime I looked back out at the water or the beach I would just lose it again. Thus I either had to look at my friend gesturing to take deep breaths or look straight down at the log.
I picked up a couple rocks and focused on them. In the meantime, our one friend whipped out her little pocket knife and began to build a boat. When the task was complete she went down to the water, whipped off her shoes and socks, rolled up her pant legs, and braved the frigid Puget Sound water to set the boat asail.
My other friend and I watched intently and laughed at the playful sight. It worked! Her boat that she built was bobbling away down the shore in the waves. When she returned we began to rock hunt where we sat and I began to spill out my limited knowledge of minerology and interesting tidbits of geology. LOL We found lots of rocks referred to as "gneiss" and I cracked my joke about the "nice" rocks.
They intently listened and laughed at my silly jokes. I continued on about the similarities and differences between the geology of Puget Sound and the various places I had visited on the Italian coast. The shift in attention toward the boat building experiment and my incessant ranting on about rocks and geology seemed to stop the hyperventilating episode. I was actually breathing normally and talking again.
Thanks Laura and Melody! My day would not have been the same without you!
Afterwards, we decided to take a walk down by the beach (for those who know the area, I am referring to the fantastic Lincoln Park of Seattle). The park was packed and all the shelters were taken. At the beach there were people swimming, children playing in the water and on logs, people walking their dogs, and some on bicycles.
Even though the path was flat, I was acutely aware of my difficulty negotiating my balance. At the picnic, a man has asked me in sign if I was ok. There was no alcohol there so I do not think he misinterpreted me as being drunk. He seemed to understand when I explained briefly why I might have been traversing from tree to tree and grasping on to each one.
As I walked I could not help but think of when I lived in the area and had rollerbladed and ran along the path with full freedom of mobility. Reminiscing about this made me sad. I could not help but think about my youth just only a year or so ago. I tried to block it out of my mind and instead focused on walking the path.
Then we decided to sit on a log for a short bit to admire the mountains painted perfectly behind the sea and the sailboats bobbing on their moorings near the ferry dock. It was sort of a challenge to navigate safely over to the logs so I picked one closeby.
Our one friend grew up on the Monterey Coast and was overjoyed to play on the beach again just as though she were a kid again. I watched her excitedly run to the water. At the same time, I noticed two small children dancing from driftwood log to another and I found myself entranced. I thought of the days when all of this was thrilling for me and jumping among the logs or rocks was an easy skill.
I turned my focus back to my friends playing along the shore. The waves gently pushed forward the bright green sea lettuce that was so familiar to me. In the sun, the wet pebbles glimmered in a multitude of colors against the grey brown sand. As I looked into the waves and smelled the sea salt all I could think about were the days not so very long ago of diving on the shores of Puget Sound and my love of the beach.
It was all exhilerating yet utterly overwhelming. It seemed everywhere I looked was a reminder of who I used to be and what I loved so much about life. My heart was crushed! It was as though someone just delivered the harsh blow that my husband or one of my loved ones was instantly killed in a devastating crash! I became crippled in a wave of emotion I could no longer escape from.
Now I know how my dear friend's mother felt when I went to visit her family shortly after her death. Anne Marie was killed instantly in a head on collision just a few days before Christmas. I thought it might make her mother feel better if I brought her a nice bouquet of flowers. The moment she saw me and the flowers in my hand she broke out into a fit of tears. I felt horrible ...like I did something to offend her. I later discovered that Anne Marie regularily brought her mom a bouquet of fresh flowers when she came home from college.
At the moment the same feeling of grief overcame me. I tried very hard to hold it back because I did not want to ruin the good time my friends were having. The more I held it in, the worse it became. Since I can no longer shed tears or cry I started hyperventilating hysterically. My friends inquired if I was ok and of course I responded that I was. I tried my darndest to hide it but it got to the point that I could not even speak and it was becoming difficult to breath.
I did not want them to leave the shore but of course they did. I was not even capable of explaining what was happening. They came over to where I sat on the log and helped me get into the rythym of taking slow deep breaths. I had to concentrate extremely hard to do so. Everytime I looked back out at the water or the beach I would just lose it again. Thus I either had to look at my friend gesturing to take deep breaths or look straight down at the log.
I picked up a couple rocks and focused on them. In the meantime, our one friend whipped out her little pocket knife and began to build a boat. When the task was complete she went down to the water, whipped off her shoes and socks, rolled up her pant legs, and braved the frigid Puget Sound water to set the boat asail.
My other friend and I watched intently and laughed at the playful sight. It worked! Her boat that she built was bobbling away down the shore in the waves. When she returned we began to rock hunt where we sat and I began to spill out my limited knowledge of minerology and interesting tidbits of geology. LOL We found lots of rocks referred to as "gneiss" and I cracked my joke about the "nice" rocks.
They intently listened and laughed at my silly jokes. I continued on about the similarities and differences between the geology of Puget Sound and the various places I had visited on the Italian coast. The shift in attention toward the boat building experiment and my incessant ranting on about rocks and geology seemed to stop the hyperventilating episode. I was actually breathing normally and talking again.
Thanks Laura and Melody! My day would not have been the same without you!
Friday, June 17, 2005
An Old Rag Doll
Monday after breakfast I bit down on something hard after breakfast (late...around 10 am). It took me a good hour to realize what that hard thing was. It was actually a 1/4 chunk of my upper molar! When I went to take Katie to the bathroom and spoke to her, I noticed the large, sharp gash in my mouth. Tuesday the same thing happened to the molar on the other side of my mouth yet the piece was smaller.
I told my father that I felt like in an old rag doll because I was falling apart. A rag doll is much loved throughout the years but eventually the limps and clothes get tattered and the eyes, nose, and mouth either fall off or begin to fall apart.
It seems within the past year something new and unpleasant is always happening to me. Not trying to be negative but the word "better" is beginning to lose its luster. Everytime I begin to feel "better" or think I am getting "better" something else gets thrown in the mix.
Ok let's count it up: 1) I no can no longer hear any sound (which I resigned myself too and felt was fine if that was the only price to pay)
2) Half of my face has suffered from facial weakness which not only affects my outward appearance but has physical consequences as well (such as loss of tear production, the inability to completely shut my right eye and thus blurs my vision, and double vision at times) 3) I have lost most of my sense of balance and stagger around the store like a drunk and it is draining to try to walk normally let alone trying to walk as far or as fast. 4) Not sure how to explain this but my eyes are messed up now. I can no longer look to the side of me without losing focus (like falling down or driving off the road.) I believe this is called my vestibular ocular reflex (VOR). It is the inability of the eyes to maintain focus on an object while moving. Thus when I am moving I cannot make out faces and I must completely remain focused ahead on the road while driving. 5) My damn back teeth are falling apart! 6) My hands and feet routinely go numb and feel uncomfortably prickly (like pins and needles are being stuck in them). I have now learned that this might be due to a condition called "neuropathy". 7) My hair in the front of my scalp has begun to thin. 8)I am not sure why but recently I have had certain pain or stiffness in my body. My back is thrown into spasms when I am doing the dishes for a little while, my ankle is stiff and sore, and my one thigh muscle has begun to get sore and cramped up as if I had been at the gym the day before doing squats. The truth is I rarely work out because I am so weak now. Just going for what I used to consider a short walk is absolutely exhausting now and I am slower!
If you were to repair a rag doll it would not be as costly unless of course you decided to use diamonds and emeralds for the mouth, nose, and eyes! Each root canal costs over $2,000 (only a very small portion of that is covered by dental insurance)! I need at least 2 (which would make it a total of 4 root canals in my lifetime).
I guess that is the price I pay for staying alive. Yes I brush my teeth. The dental problems stem from the chemotherapy I went through 12 years ago. The problem is compounded now due to the radiation and meds causing "dry mouth" from decreased saliva production (you need saliva to kill the bacteria in your mouth).
On the plus side, my fingernails are harder than they have ever been (they were always soft and easily breakable before). In addition, the facial weakness has made the genetic wrinkle between my eyes disappear!
I told my father that I felt like in an old rag doll because I was falling apart. A rag doll is much loved throughout the years but eventually the limps and clothes get tattered and the eyes, nose, and mouth either fall off or begin to fall apart.
It seems within the past year something new and unpleasant is always happening to me. Not trying to be negative but the word "better" is beginning to lose its luster. Everytime I begin to feel "better" or think I am getting "better" something else gets thrown in the mix.
Ok let's count it up: 1) I no can no longer hear any sound (which I resigned myself too and felt was fine if that was the only price to pay)
2) Half of my face has suffered from facial weakness which not only affects my outward appearance but has physical consequences as well (such as loss of tear production, the inability to completely shut my right eye and thus blurs my vision, and double vision at times) 3) I have lost most of my sense of balance and stagger around the store like a drunk and it is draining to try to walk normally let alone trying to walk as far or as fast. 4) Not sure how to explain this but my eyes are messed up now. I can no longer look to the side of me without losing focus (like falling down or driving off the road.) I believe this is called my vestibular ocular reflex (VOR). It is the inability of the eyes to maintain focus on an object while moving. Thus when I am moving I cannot make out faces and I must completely remain focused ahead on the road while driving. 5) My damn back teeth are falling apart! 6) My hands and feet routinely go numb and feel uncomfortably prickly (like pins and needles are being stuck in them). I have now learned that this might be due to a condition called "neuropathy". 7) My hair in the front of my scalp has begun to thin. 8)I am not sure why but recently I have had certain pain or stiffness in my body. My back is thrown into spasms when I am doing the dishes for a little while, my ankle is stiff and sore, and my one thigh muscle has begun to get sore and cramped up as if I had been at the gym the day before doing squats. The truth is I rarely work out because I am so weak now. Just going for what I used to consider a short walk is absolutely exhausting now and I am slower!
If you were to repair a rag doll it would not be as costly unless of course you decided to use diamonds and emeralds for the mouth, nose, and eyes! Each root canal costs over $2,000 (only a very small portion of that is covered by dental insurance)! I need at least 2 (which would make it a total of 4 root canals in my lifetime).
I guess that is the price I pay for staying alive. Yes I brush my teeth. The dental problems stem from the chemotherapy I went through 12 years ago. The problem is compounded now due to the radiation and meds causing "dry mouth" from decreased saliva production (you need saliva to kill the bacteria in your mouth).
On the plus side, my fingernails are harder than they have ever been (they were always soft and easily breakable before). In addition, the facial weakness has made the genetic wrinkle between my eyes disappear!
Sunday, June 12, 2005
Love That Aroma!
It is interesting h0w my sense of scent has become heightened since the deafness. I don't know if this is true for all people afflicted with NF 2. For me though, I can't seem to get enough of pleasing scents.
I have generally been one to stop and literally smell the roses even before I lost all my hearing. But now I can bury my nose within one flower and not want to leave. It as though I cannot sniff enough essense out of it!
A couple of the scents that were always my favorite were fresh linens (blankets) that my mother hung on the clothes line while I was growing up. LOL That is provided the nearby farm was not running liquid manure that day and the wind not had shifted it in our direction.
Later, as an adult living in Seattle, I use to cherish the smell of the sea salt combined with wild roses as I raced against the sunset on my rollerblades at Alki beach.
Now I know those are not examples of scents as a deaf person but now I can literally be on a walk in the countryside and smell a hamburger at the gas station a mile away! I have often noticed that I can either smell things that others cannot or I smell them long in advance.
A few of my recent favorites are:
1) the realization the large blueberry bushes grow flowers that have a very pleasing and a light but sweet aroma
2) the smell of the earth at dusk, during the rain, or after a fresh rain
3) today the scent of fresh quilts out of the dryer that I could become lost forever in
Of course there are many others such as most fruiting trees or aromatic flowers (hyacinth, freesia, and daffodil), and the smell of my husband's deoderant and a clean white t-shirt but these are what came to mind first. Oh yeah, the smell of summer is here. It made me want to put on my rollerblades anyway the other day and has made me determined to want to go diving again.
I have generally been one to stop and literally smell the roses even before I lost all my hearing. But now I can bury my nose within one flower and not want to leave. It as though I cannot sniff enough essense out of it!
A couple of the scents that were always my favorite were fresh linens (blankets) that my mother hung on the clothes line while I was growing up. LOL That is provided the nearby farm was not running liquid manure that day and the wind not had shifted it in our direction.
Later, as an adult living in Seattle, I use to cherish the smell of the sea salt combined with wild roses as I raced against the sunset on my rollerblades at Alki beach.
Now I know those are not examples of scents as a deaf person but now I can literally be on a walk in the countryside and smell a hamburger at the gas station a mile away! I have often noticed that I can either smell things that others cannot or I smell them long in advance.
A few of my recent favorites are:
1) the realization the large blueberry bushes grow flowers that have a very pleasing and a light but sweet aroma
2) the smell of the earth at dusk, during the rain, or after a fresh rain
3) today the scent of fresh quilts out of the dryer that I could become lost forever in
Of course there are many others such as most fruiting trees or aromatic flowers (hyacinth, freesia, and daffodil), and the smell of my husband's deoderant and a clean white t-shirt but these are what came to mind first. Oh yeah, the smell of summer is here. It made me want to put on my rollerblades anyway the other day and has made me determined to want to go diving again.
Friday, June 10, 2005
Shoes
Shoes. Who would ever think that shoes could be representative of a basic freedom?
I was just in my bedroom trying to pick up things seeing as I am a little more motivated to do so today. I have been thinking about some of my shoes for a month or more now. What to do with them??
Under my bed were three of my favorite pairs of shoes that I have not worn in months! They were great shoes. It made me sad to see them. I have never been a stiletto type of person but I could wear shoes with a nice chunky heel.
The shoes were some of the basics to any woman's wardrobe. Two black pair and one mother of pearl white sandals that I wore at my wedding and used as part of my "going to a wedding" attire. As a matter of fact I think I wore them to every friend's wedding since mine in 2000 except the two latest weddings I attended where I wore a darker color.
The last time I wore them was right after treatment when I went to my friend Kate's wedding in July (when my balance was still reasonable.....not the best but much better than now). I thought I remember the heel being more flat and incorporated with the shoe but alas when I just looked the heel was definitely a seperate part of the shoe.
The two black ones were also for dress occassions or for wearing a power suit or gaining a bit of height. One pair was a platform shoe which I could wear amazingly well and I loved the days when I wore them teaching. I could squat down on them comfortably at eye level or desk level distance when working one on one or with a small group of students. The other pair was black swede and I loved wearing them with winter outfits (especially to winter weddings).
Ahh well. Harley never liked it when I wore heels anyway. So I guess it is back to flatland like when I was a kid.
I was just in my bedroom trying to pick up things seeing as I am a little more motivated to do so today. I have been thinking about some of my shoes for a month or more now. What to do with them??
Under my bed were three of my favorite pairs of shoes that I have not worn in months! They were great shoes. It made me sad to see them. I have never been a stiletto type of person but I could wear shoes with a nice chunky heel.
The shoes were some of the basics to any woman's wardrobe. Two black pair and one mother of pearl white sandals that I wore at my wedding and used as part of my "going to a wedding" attire. As a matter of fact I think I wore them to every friend's wedding since mine in 2000 except the two latest weddings I attended where I wore a darker color.
The last time I wore them was right after treatment when I went to my friend Kate's wedding in July (when my balance was still reasonable.....not the best but much better than now). I thought I remember the heel being more flat and incorporated with the shoe but alas when I just looked the heel was definitely a seperate part of the shoe.
The two black ones were also for dress occassions or for wearing a power suit or gaining a bit of height. One pair was a platform shoe which I could wear amazingly well and I loved the days when I wore them teaching. I could squat down on them comfortably at eye level or desk level distance when working one on one or with a small group of students. The other pair was black swede and I loved wearing them with winter outfits (especially to winter weddings).
Ahh well. Harley never liked it when I wore heels anyway. So I guess it is back to flatland like when I was a kid.
Funny Dogs!
I awoke at 8 am and checked on Katie because for the first time I left her outside for the night leashed to the deck. Normally she is put in the garage at night and because it is darker in there she sleeps late. Anyhow, both she and Jake were sleeping away. Jake is a good boy and does not bother her. All he seems to do is to steal any rawhide bones I give her when we has his own that he hides or buries somewhere in the yard.
So I go upstairs and check the cyberknife society message board where I have been consulting with some other cyberknife doctors from around the country. Nobody seems to have a clear idea of what is happening to me and my side effects and digression are rather rare. It has been suggested that maybe I should have surgery to remove the dead tumor from the experts here. Therefore, I finish writing an email to one of the doctors elsewhere in the country (both did not think surgery should be exercised unless I was suffering from edema, hydrocephalis, or a serious compromise to the brainstem).
After I finished explaining the details of the MRI reports and the tumor size I went downstairs to check on Katie. It was nearly 9 am and she was definitely awake! Somehow she had managed to pull this great big floral pot on wheels over to her area. Fortunately I had not planted anything in it yet since the daffodils this spring. Here she was standing up in the middle of the pot with her front paws on the deck railing. Her tail was just a wagging! I have no idea what she was doing. Maybe she had to take a leak and I was not done there to let her off leash. Perhaps instead of peeing on the deck she chose to pee in the pot. I really don't know.
When I took her out in the yard to go to the bathroom it did not include number 1. Thus that leads me to conclude that is what she was doing standing in the pot as it still had some daffodil greenery in it that looked somewhat like grass.
Hey mom does this remind you of something? LOL :o)
So I go upstairs and check the cyberknife society message board where I have been consulting with some other cyberknife doctors from around the country. Nobody seems to have a clear idea of what is happening to me and my side effects and digression are rather rare. It has been suggested that maybe I should have surgery to remove the dead tumor from the experts here. Therefore, I finish writing an email to one of the doctors elsewhere in the country (both did not think surgery should be exercised unless I was suffering from edema, hydrocephalis, or a serious compromise to the brainstem).
After I finished explaining the details of the MRI reports and the tumor size I went downstairs to check on Katie. It was nearly 9 am and she was definitely awake! Somehow she had managed to pull this great big floral pot on wheels over to her area. Fortunately I had not planted anything in it yet since the daffodils this spring. Here she was standing up in the middle of the pot with her front paws on the deck railing. Her tail was just a wagging! I have no idea what she was doing. Maybe she had to take a leak and I was not done there to let her off leash. Perhaps instead of peeing on the deck she chose to pee in the pot. I really don't know.
When I took her out in the yard to go to the bathroom it did not include number 1. Thus that leads me to conclude that is what she was doing standing in the pot as it still had some daffodil greenery in it that looked somewhat like grass.
Hey mom does this remind you of something? LOL :o)
Tuesday, June 07, 2005
The Lone Tear
I have not been able to cry since probably last September or August because I lost tear production. This worsened in my right eye where the facial paralysis took over in December. Despite being really down lately I am glad to have shed a single tear out of my right eye on three seperate occasions this week. None of them involved emotion so I am still unable to cry which is quite frustrating given the circumstances.
My 3 occasions:
1) I was chewing on baked lays one night and it hurt to swallow them.
2) For some reason a tear dropped out of my eye at the end of the movie
"The Aviator" last night but I did not feel overly emotional. I just felt sorry for the Howard Hughes.
3) I opened the oven and the heat seemed to produce a tear.
My 3 occasions:
1) I was chewing on baked lays one night and it hurt to swallow them.
2) For some reason a tear dropped out of my eye at the end of the movie
"The Aviator" last night but I did not feel overly emotional. I just felt sorry for the Howard Hughes.
3) I opened the oven and the heat seemed to produce a tear.
Thursday, June 02, 2005
The Cutest Thing
The included link discusses China's research into the role dogs (and animals) play in helping improve patient attitude and recovery. My dogs make me really happy and create a pleasing release from thinking about NF2 and the things I am going through. I can't imagine my life without them.
Last night I fell asleep on the daybed next to the large windows overlooking the deck and yard. I awoke to a funny but cute surprise. There are two plastic whiskey barrel pots containing lavendar just outside the window and literally adjacent to the daybed. One of the pots has a ceramic bunny planter sitting inside it.
Amazingly Jake had managed to climb into the pot and squeeze himself next to the ceramic bunny! He was all curled up sleeping but crushing the lavendar plant Harley had bought me. I did not have the heart to wake him up and shew him out of the pot. I decided to wait until Harley came home from work 15 minutes later.
It was so cute that it was hard to get mad at him. I wish we had taken a picture. I let Harley do the deed of telling him to get out of the pot. He knew he was in trouble as he was quivering but he also knew he was cute as he was wagging his tail. Therefore, Harley decided to help him resist the temptation by surrounding the planters with deck chairs.
This is just one of the small things I like about having my dogs around. When they play together it is fun to watch them. They have games just like ordinary children where they play hide-n-seek, chase, or bury and find the bone. There are also times when they cuddle up with one another.
Last night I fell asleep on the daybed next to the large windows overlooking the deck and yard. I awoke to a funny but cute surprise. There are two plastic whiskey barrel pots containing lavendar just outside the window and literally adjacent to the daybed. One of the pots has a ceramic bunny planter sitting inside it.
Amazingly Jake had managed to climb into the pot and squeeze himself next to the ceramic bunny! He was all curled up sleeping but crushing the lavendar plant Harley had bought me. I did not have the heart to wake him up and shew him out of the pot. I decided to wait until Harley came home from work 15 minutes later.
It was so cute that it was hard to get mad at him. I wish we had taken a picture. I let Harley do the deed of telling him to get out of the pot. He knew he was in trouble as he was quivering but he also knew he was cute as he was wagging his tail. Therefore, Harley decided to help him resist the temptation by surrounding the planters with deck chairs.
This is just one of the small things I like about having my dogs around. When they play together it is fun to watch them. They have games just like ordinary children where they play hide-n-seek, chase, or bury and find the bone. There are also times when they cuddle up with one another.
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