Wednesday, July 27, 2005


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!

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 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'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).

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

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.