This is the draft post I wrote on May 31st and forgot to publish until today. (The information is from May but my reflection has become even more enhanced now that I am part of the Team In Training program to prepare for the Seattle Marathon in November. Friday I met two women in Team Survivor NW - one who had breast cancer and the other who had uterine cancer. They are both training for the Danskin Triathalon in August. Yesterday at team in training I met a man with hearing loss doing who has just been diagnosed with acute lymphocytic leukemia. He will be starting chemotherapy next month. He was a very fast walker and I told him to keep up the good work because it will be even more important when he goes through treatment.)
Yesterday I went to the Seattle Breast Center for a bone density scan.
NF2 Note: The reason we were assessing my bone density is because there have been cases of NF2 patients having premature osteoporosis (age 20s and 30s) due to long term use of steroids. Steroid therapy is commonly used to reduce tumor and/or brain swelling. Often steroids are prescribed following brain radiosugery or traditional surgery. Due to tumor swelling which caused problems and made me sick, I was put on steroid therapy several times (10-11) over the course of a year. I took mostly the steroid Decadron but was also given Predisone for a month or more.
The location of where I had the scan is the same building where the radiology and oncology unit is housed and the NW Tumor Institute. I regularily go there to see my radiologist for followup visits after each MRI. At the same place also where they administer chemotherapy and radiation treatments to cancer patients.
While leaving the building a woman who had or is obviously going through cancer treatment was walking in front of me. She was easily recognized by her lack of hair. Even though I never lost my hair completely (due to an ice cap I wore to freeze the hair follicles), I was taken back to what it was like to go through the horor of cancer. I remember crying over the thought of losing my hair but fortunately for me I had an option. Not everyone does and for a woman you can only begin to fathom what the loss of hair does to one's self esteem and identity.
In any case, this is not about hair. Seeing her reminded me of what I went through and what many with cancer go through. I felt for her, not pity but empathy.
As we reached the sunlight at the door pouring in from outside I noticed more detail about her. She must have been a mother as it seemed she had a young daughter with her and a husband or friend. She was wearing a nice ensemble of capri pants with a floral border at the bottom. As the sun glistened upon her I saw the beauty of life within her. She turned and gave me an angelic smile as we opened the door.
At that moment I felt proud and a warm satisfaction inside. Seeing her was like the difference between seeing a scenic photograph and actually going to the place and experiencing it first hand. Doing the Relay for Life was a good experience for me but seeing someone in live flesh and blood surviving and going through treatment made it more real. Knowing what treatment is like and how it can make one feel, I would dare to say that she was having a good day or was close to or finished with treatment. I saw in her the sparkle of hope that Relay represents.
At that moment I felt a presence greater than myself. I will never know the people who contributed to help keep me alive and give me hope. Likewise they will never know me but their belief in giving people such as myself will live on. My team and all the people at all the Relays around the world may never see who they helped but their efforts and faith make a profound difference in the world.
If I had not done the Relay, invited others to participate with me and contribute to the cause, and if there were not people who establish events like the Relay, that lady and others like her may not be alive, may not be a mother, a friend, a wife, a sister, a daughter, a relative, and would not have the opportunity to do what she was meant to do in her life.
Wednesday, May 31, 2006
Wednesday, May 24, 2006
On my mind at the moment
"If not me, then who? If not now, then when?"
- more later on what this means (or you can click the post title to view the link for a hint)
- more later on what this means (or you can click the post title to view the link for a hint)
Tuesday, May 16, 2006
Guilligan's Cancer Free Island - Here is the Relay Team
This Saturday through Sunday a team of friends and I will be walking/running/jogging around a track at a local high school throughout the night to raise money and awareness for cancer and to also honor all who have been inflicted with the disease.
We are pretty excited. At this time there are 7 of us (including me). I will chronologically list how I came to have the fantastic opportunity to form friendships with all of them.
Yumi, my hiking partner and friend, I naturally met on a mountain top. OOOH I just loved to hike! Being on top of a mountain top was my sanctuary and my insides ached if a nice weekend day went by without taking the opportunity to be on a trail. When I turned 30, Harley got me our dogs (a very loving gift at that) and I would trek with them frequently to the top of Tiger Mountain overlooking Seattle and all of Puget Sound.
Back when I still had some hearing, I never wore my hearing aide on the trail because I would sweat too much. While taking a water break and admiring the late afternoon view, a woman came up to me and tried to communicate. Normally, in that situation people would walk away but this person was more persistent. I did have my aide with me in my pack and we chatted some before she wrote her name and number on a receipt from inside her wallet. Ever since then we have been friends and enjoyed many hikes together (one where we even got lost and had to run out of the woods and ended up in a nearby town!).
Yumi and her husband Dan have also joined me in the NF Challenge in the 3 years that I participated. It is a walking/running event held in Redmond, Washington to raise funding for Neurofibromatosis research towards finding a cure.
Yumi is also taking a glacial climbing class currently and will actually be in the Cascade Mountains the day after the event to practice self arrest skills on ice.
Recently, Yumi and her sister made a trip to Japan and Malaysia to care for her father who is battling lung cancer. We wish him well!
Melody is the second team member I came to know when I started to learn sign language again. After completing my graduate degree and for all practical purposes becoming "audiometrically deaf", it was apparent that the large growth spurt of the tumor on the side of my residual hearing was going to mostly likely leave me in a life of silence. Harley and I took a class at the Hearing Speech and Deafness Center (HSDC) in Seattle with some friends and one of my real time captioners. It was there that we met Melody.
When the class ended I transfered over to the community college and did not meet up with Melody again until we ran into each other at the Bellevue Community College ASL coffee night. At the time (in February of 2005), I had found an online a group of people interesting in sign language but I had not gone to a meeting yet as I was having trouble driving at night. Low and behold, Melody and I discovered that we did not live that far from each other! Thus she graciously offered to pick me up and bring me to the ASL meetups! How could I be so fortunate?
Melody will be leaving us soon and we are all pretty sad but also happy for her at the same time. She has been accepted by Western Oregon University in their Interpreter Training Program. For those who don't know what that means, she will become an American Sign Language Interpreter of the Deaf.
Ok, now we back track a little. After attending the HSDC, I transfered and took ASL II at Bellevue Community College. It was there that I became friends with Kristy. Of all the students there, she was the most interested in SINCERELY getting to know me. We would have good conversations before class, after, and during break using sign. Bless her heart! She really helped me out through that class as I took the class in the summer and that is when I went for treatm
ent. She diligently took very good notes for me and even typed them up! When I got back I was kind of sick and lethargic. Some days it was hard to concentrate but
Kristy was there for me.
Kristy also knows many other languages including Japanese. She is afflicted with a very rare blood disorder called porphyria. Sometimes it makes her very tired and sick but I always see her with a sunny smile on her face and a cheery disposition. http://www.porphyriafoundation.com/about_por/index.html
It is hard to remember exactly, but during the fall of 2004 I took both ASL III at BCC and ASL IV at SCCC at the same time. On a night when the classes did not conflict, I had a chance to attend a Silent Voices Club ASL games event. It was there that I first met George and learned that he LOVES to snowboard.
George is one of our Deaf friends who is really patient with us all learning ASL. George moved from the Philippines where he was born. There, he learned Filipino sign language which is different from American Sign Language. Thus, when his family moved here, he and his brother (who is also deaf from birth) had to go through the same classes we have gone through to learn American Sign Language. So actually, George is Tri-lingual (knows two sign languages plus English).
George works at the Fred Hutchinson Cancer Center in Seattle which is an important organization that conducts research and develops new treatments to fight cancer. George and I also share a love of Thai and Indian food. :o)
Okay now we will skip ahead back to where I left off with Melody. I met Laura through Melody that same night she and I reconnected again (at the Bellevue Coffee Night). They were in the same ASL class and we all started going to the ASL meetup together. I would ride with Melody from out where we lived and then we would meet Laura in Redmond and ride together from her house.
If you read back in my blog to last June, the 3 of us went to an annual Deaf community picnic. Melody drove. At the picnic I was still not well and my balance was just horrible. I staggered from tree to tree trying to support myself and by the reaction of some, they must have thought I was drunk. After eating the three of us walked down to the beach and I literally just lost it sitting on a log watching everyone play in the water and on the driftwood. All I could think of was how I used to rollerblade on the path, run on the cliffside trail, scuba dive in the water and walk over the rocks and wood with all my equipment, and just generally walk along the shore with ease.
I became totally depressed and hit with the reality that all of that was gone. I was totally traumatized at that moment and broke down. I tried to withhold my emotion but it was uncontrollable. I can't produce tears so I was kind of hyperventilating and it became extremely hard to breath. Melody and Laura immediately came to my side to calm me. LOL Then the strangest thing happened, like a magician pulling a rabbit out of a hat Laura whipped out some sort of tool out of her purse. She picked up a piece of driftwood and began to carve away until she has created a sailboat with record speed. Like a toddler, I calmed down and sat dumbfounded and amazed! As you can tell, she is a mother and a fantastic one at that to two beautiful children: Cody, an aspiring 13 yr old football player and Destiny, a 9 year old accomplished writer and budding artist.
Laura has the energy of a marathon mother. Not only is she a single mom, but she also works, attends the University of Washington fulltime (studies anthropology), is taking the final ASL level 6 class at Seattle Central Community college to obtain a minor in Deaf studies, is a caregiver for her children's grandmother who is battling cancer, but also found time to join our team in walking in the Relay and has done an amazing job raising funds.
Diana, I met through our sign language meetup group. She is the co-organizer and also attends many Deaf and ASL functions in Seattle and on the east side where we reside. Diana will be soon leaving us too and transfering to the same school that Melody will be attending (Western Oregon University). She is very interested in becoming a teacher of Deaf children and I think she will be a wonderful one! For being much younger than the rest of us, Diana has a rare gift of learning empathy at an early age. She is very in tune to the needs of others and has a profound understanding that would make her an excellent educator.
She is also a very dependable friend. We have gotten to know each other more as we were in the same ASL class last quarter. Over spring break I went to visit my grandpa who is battling cancer. Not only was I taking the train for the first time but I was also traveling alone for the first time as a deaf person. I was very worried about communication obstacles with the train agents, getting the wrong information, and missing the train. Thanks to Diana, I was able to get on the right train at the right time and she was there to bring me home on my return trip. If she had not brought me to the station and came in with me, I most likely would have gone to the wrong place or missed the train. Communication is really harry when people are unwilling to understand that you are deaf, need assitance due to balance, and are unwilling to take the steps (such as writing more specific information about where and when to get on the train) to help you get where you are going.
Diana has also been a God Send with giving me rides home after MY (not hers; she has a different one in the morning) ASL class (due to lack of a car from recent mechanical problems) and to ASL events at night (when it is more difficult to drive). She will also be greatly missed by my team and I.
Last I will mention Josh who is a real sweety. I also met him through our ASL meetup. He has been helping us spread the word and Laura with her donations. Josh put it many hours last year at the Redmond Relay. He is the only person out of all of us who has done a Relay event before. This year he can't walk with us because his senior prom is the same day. However, he is strongly with us in spirit. Josh is a hard of hearing student in the running start program. What that means is that in his last two years of high school he takes classes at the community college for credit. Thus, by the time he graduates high school, he will have either an associates degree in liberal studies or his two years of liberal classes required for a 4 year degree. Josh has been taking ASL at Bellevue Community College and is a member of their ASL club "Silent Voices". He is also smart with computers and has a side business with a friend and is an avid soccer player.
And there you have it........Our fantastic team!!!!!
I am very blessed to know them and have their friendship and support. I can't thank them enough and I keep asking myself and God how I got so lucky. :o)
We are pretty excited. At this time there are 7 of us (including me). I will chronologically list how I came to have the fantastic opportunity to form friendships with all of them.
Yumi, my hiking partner and friend, I naturally met on a mountain top. OOOH I just loved to hike! Being on top of a mountain top was my sanctuary and my insides ached if a nice weekend day went by without taking the opportunity to be on a trail. When I turned 30, Harley got me our dogs (a very loving gift at that) and I would trek with them frequently to the top of Tiger Mountain overlooking Seattle and all of Puget Sound.
Back when I still had some hearing, I never wore my hearing aide on the trail because I would sweat too much. While taking a water break and admiring the late afternoon view, a woman came up to me and tried to communicate. Normally, in that situation people would walk away but this person was more persistent. I did have my aide with me in my pack and we chatted some before she wrote her name and number on a receipt from inside her wallet. Ever since then we have been friends and enjoyed many hikes together (one where we even got lost and had to run out of the woods and ended up in a nearby town!).
Yumi and her husband Dan have also joined me in the NF Challenge in the 3 years that I participated. It is a walking/running event held in Redmond, Washington to raise funding for Neurofibromatosis research towards finding a cure.
Yumi is also taking a glacial climbing class currently and will actually be in the Cascade Mountains the day after the event to practice self arrest skills on ice.
Recently, Yumi and her sister made a trip to Japan and Malaysia to care for her father who is battling lung cancer. We wish him well!
Melody is the second team member I came to know when I started to learn sign language again. After completing my graduate degree and for all practical purposes becoming "audiometrically deaf", it was apparent that the large growth spurt of the tumor on the side of my residual hearing was going to mostly likely leave me in a life of silence. Harley and I took a class at the Hearing Speech and Deafness Center (HSDC) in Seattle with some friends and one of my real time captioners. It was there that we met Melody.
When the class ended I transfered over to the community college and did not meet up with Melody again until we ran into each other at the Bellevue Community College ASL coffee night. At the time (in February of 2005), I had found an online a group of people interesting in sign language but I had not gone to a meeting yet as I was having trouble driving at night. Low and behold, Melody and I discovered that we did not live that far from each other! Thus she graciously offered to pick me up and bring me to the ASL meetups! How could I be so fortunate?
Melody will be leaving us soon and we are all pretty sad but also happy for her at the same time. She has been accepted by Western Oregon University in their Interpreter Training Program. For those who don't know what that means, she will become an American Sign Language Interpreter of the Deaf.
Ok, now we back track a little. After attending the HSDC, I transfered and took ASL II at Bellevue Community College. It was there that I became friends with Kristy. Of all the students there, she was the most interested in SINCERELY getting to know me. We would have good conversations before class, after, and during break using sign. Bless her heart! She really helped me out through that class as I took the class in the summer and that is when I went for treatm
ent. She diligently took very good notes for me and even typed them up! When I got back I was kind of sick and lethargic. Some days it was hard to concentrate but
Kristy was there for me.
Kristy also knows many other languages including Japanese. She is afflicted with a very rare blood disorder called porphyria. Sometimes it makes her very tired and sick but I always see her with a sunny smile on her face and a cheery disposition. http://www.porphyriafoundation.com/about_por/index.html
It is hard to remember exactly, but during the fall of 2004 I took both ASL III at BCC and ASL IV at SCCC at the same time. On a night when the classes did not conflict, I had a chance to attend a Silent Voices Club ASL games event. It was there that I first met George and learned that he LOVES to snowboard.
George is one of our Deaf friends who is really patient with us all learning ASL. George moved from the Philippines where he was born. There, he learned Filipino sign language which is different from American Sign Language. Thus, when his family moved here, he and his brother (who is also deaf from birth) had to go through the same classes we have gone through to learn American Sign Language. So actually, George is Tri-lingual (knows two sign languages plus English).
George works at the Fred Hutchinson Cancer Center in Seattle which is an important organization that conducts research and develops new treatments to fight cancer. George and I also share a love of Thai and Indian food. :o)
Okay now we will skip ahead back to where I left off with Melody. I met Laura through Melody that same night she and I reconnected again (at the Bellevue Coffee Night). They were in the same ASL class and we all started going to the ASL meetup together. I would ride with Melody from out where we lived and then we would meet Laura in Redmond and ride together from her house.
If you read back in my blog to last June, the 3 of us went to an annual Deaf community picnic. Melody drove. At the picnic I was still not well and my balance was just horrible. I staggered from tree to tree trying to support myself and by the reaction of some, they must have thought I was drunk. After eating the three of us walked down to the beach and I literally just lost it sitting on a log watching everyone play in the water and on the driftwood. All I could think of was how I used to rollerblade on the path, run on the cliffside trail, scuba dive in the water and walk over the rocks and wood with all my equipment, and just generally walk along the shore with ease.
I became totally depressed and hit with the reality that all of that was gone. I was totally traumatized at that moment and broke down. I tried to withhold my emotion but it was uncontrollable. I can't produce tears so I was kind of hyperventilating and it became extremely hard to breath. Melody and Laura immediately came to my side to calm me. LOL Then the strangest thing happened, like a magician pulling a rabbit out of a hat Laura whipped out some sort of tool out of her purse. She picked up a piece of driftwood and began to carve away until she has created a sailboat with record speed. Like a toddler, I calmed down and sat dumbfounded and amazed! As you can tell, she is a mother and a fantastic one at that to two beautiful children: Cody, an aspiring 13 yr old football player and Destiny, a 9 year old accomplished writer and budding artist.
Laura has the energy of a marathon mother. Not only is she a single mom, but she also works, attends the University of Washington fulltime (studies anthropology), is taking the final ASL level 6 class at Seattle Central Community college to obtain a minor in Deaf studies, is a caregiver for her children's grandmother who is battling cancer, but also found time to join our team in walking in the Relay and has done an amazing job raising funds.
Diana, I met through our sign language meetup group. She is the co-organizer and also attends many Deaf and ASL functions in Seattle and on the east side where we reside. Diana will be soon leaving us too and transfering to the same school that Melody will be attending (Western Oregon University). She is very interested in becoming a teacher of Deaf children and I think she will be a wonderful one! For being much younger than the rest of us, Diana has a rare gift of learning empathy at an early age. She is very in tune to the needs of others and has a profound understanding that would make her an excellent educator.
She is also a very dependable friend. We have gotten to know each other more as we were in the same ASL class last quarter. Over spring break I went to visit my grandpa who is battling cancer. Not only was I taking the train for the first time but I was also traveling alone for the first time as a deaf person. I was very worried about communication obstacles with the train agents, getting the wrong information, and missing the train. Thanks to Diana, I was able to get on the right train at the right time and she was there to bring me home on my return trip. If she had not brought me to the station and came in with me, I most likely would have gone to the wrong place or missed the train. Communication is really harry when people are unwilling to understand that you are deaf, need assitance due to balance, and are unwilling to take the steps (such as writing more specific information about where and when to get on the train) to help you get where you are going.
Diana has also been a God Send with giving me rides home after MY (not hers; she has a different one in the morning) ASL class (due to lack of a car from recent mechanical problems) and to ASL events at night (when it is more difficult to drive). She will also be greatly missed by my team and I.
Last I will mention Josh who is a real sweety. I also met him through our ASL meetup. He has been helping us spread the word and Laura with her donations. Josh put it many hours last year at the Redmond Relay. He is the only person out of all of us who has done a Relay event before. This year he can't walk with us because his senior prom is the same day. However, he is strongly with us in spirit. Josh is a hard of hearing student in the running start program. What that means is that in his last two years of high school he takes classes at the community college for credit. Thus, by the time he graduates high school, he will have either an associates degree in liberal studies or his two years of liberal classes required for a 4 year degree. Josh has been taking ASL at Bellevue Community College and is a member of their ASL club "Silent Voices". He is also smart with computers and has a side business with a friend and is an avid soccer player.
And there you have it........Our fantastic team!!!!!
I am very blessed to know them and have their friendship and support. I can't thank them enough and I keep asking myself and God how I got so lucky. :o)
Sunday, May 14, 2006
CONTRIBUTION QUOTE
Here is a quote I will leave you with that leads me into my next blog post that I will write later:
"Everyone who receives the protection of society owes a return for the benefit."
- John Stuart Mill
"Everyone who receives the protection of society owes a return for the benefit."
- John Stuart Mill
HOLY CHARLIE HORSE!
I was rudely awaken this morning by a sharp jab in my lower calf muscle (can't remember which one). I had to keep stretching and grab the foot before I could get out of the bed to stand up. Yeah that is fine. That has happened (especially when I am on the Diamox and have not drunk enough fluids).
I made myself some oatmeal with raisins and a ripe banana boiled in(raisins and bananas are high in potassium and help to alleviate leg cramps). I had forgotten to take a potassium glucomate supplement and was planning to make a mango smoothie with the postassium rich yogurt I have.
However, I got lazy about committing to preparing it and forgot that I probably needed in and the supplement RIGHT AFTER THE LEG CRAMP OCCURANCE. As such, I was sitting at my computer just now and nailed by a whopper of a charlie horse. My calf muscle knotted up tight like a knotted rubberband pulled taut. This crap was disabling rendering my leg completely stiff. I had to sit on the floor to stretch it out as reaching down and grabbing my toe from my chair working to no avail.
The muscle is still sore when I get up and try to walk around. I guess I better start adding a regular stretching regimen to my day as well as that potassium supplement. I was all set to write a blog post about the Relay coming up this weekend but I think I better go make that mango smoothie and take a supplement.
Later, eh! Oh and HAPPY MOTHERS DAY to all the mothers out there (even the male mothers too)!
I made myself some oatmeal with raisins and a ripe banana boiled in(raisins and bananas are high in potassium and help to alleviate leg cramps). I had forgotten to take a potassium glucomate supplement and was planning to make a mango smoothie with the postassium rich yogurt I have.
However, I got lazy about committing to preparing it and forgot that I probably needed in and the supplement RIGHT AFTER THE LEG CRAMP OCCURANCE. As such, I was sitting at my computer just now and nailed by a whopper of a charlie horse. My calf muscle knotted up tight like a knotted rubberband pulled taut. This crap was disabling rendering my leg completely stiff. I had to sit on the floor to stretch it out as reaching down and grabbing my toe from my chair working to no avail.
The muscle is still sore when I get up and try to walk around. I guess I better start adding a regular stretching regimen to my day as well as that potassium supplement. I was all set to write a blog post about the Relay coming up this weekend but I think I better go make that mango smoothie and take a supplement.
Later, eh! Oh and HAPPY MOTHERS DAY to all the mothers out there (even the male mothers too)!
Weird Things Are Happening
As I told you in my previous post, I had to start taking a medication called Diamox again. If you have been reading my blog for sometime, you will recall that I started taking Diamox in January or February of 2005 (I gotta look that up as I should know if for my records). Anyhow, when I first began the medication I was also taking steroids so I would not have known the particular startup side effects other than fatigue and frequent urination.
I took the medicine for over a year and stopped mid-March. Then around Easter weekend I started to get some migranes and visual disturbances. In any case, I took the medicine on May 6th and 7th and then skipped the 8th in order for my doctor to see if there was any swelling on the morning of the 9th. Indeed there was so I started back up with 500 mg on the late evening of the 9th and ever since then.
So here is how it has been going:
I was really tired and yes I guess I will admit this, I started to piss my pants in my sleep on Wednesday morning. I was dreaming that I was at a restaurant and excused myself to go to the ladies room. When I dreamed I finished it seemed like I did not go. "Okay" I thought. "I will try to go again." This time however it felt all wrong and fortunately I woke up to realize what was happening. Therefore, I got up and went to the real bathroom and changed. That was about 9:30 am.
I went back to bed and awoke at 11:30 am. This time I could not get out of the damn bed. My right leg was numb and I could barely feel it! I had to twist around my foot, bend my knee, and work the leg until I had full feeling in it. Then I could stand up but I had to walk around to really get it working.
Thurday morning I awoke as a dang acne patch! I had a rash (like a heat rash) down the left side of my neck and spreading sparsely on my chest. Since then I have had welts develop all over my face.
Friday night after I took the medicine I looked like Rudolph the red nosed reindeer. SERIOUSLY!!! My nose became completely red in color as if it were sunburned.
I don't recall the specific days now (must have been Wednesday and Thursday), I tried to go for a run and I was completely exhausted and weak within minutes. I went for a run in a neighborhood near my house and I think I could only run for 5 minutes where I came upon the hiking trail. My lungs burned like fire and my legs felt like jello. Normally I can run on the easier parts of the trail but I felt all disoriented and my legs were really weak. I feared that with my disoriented vision and loss of leg strength that if I tripped I would not be able to catch myself. I worried that I could become badly hurt in the woods by myself.
Tonight will be sixth night taking the medicine so hopefully my body will become used to it again and some of these side effects will start to lessen. I really do want to do my run next weekend in the Relay so I hope my balance will be better.
Why am I awake right now? Training. lol the Relay for Life event is 22 hours. I will start with a cancer survivor lap at noon, my 3 mile run later in the early evening while it is still daylight, and walking in the evening when it is dark. I am bringing my tent there so that I can take naps.
I took the medicine for over a year and stopped mid-March. Then around Easter weekend I started to get some migranes and visual disturbances. In any case, I took the medicine on May 6th and 7th and then skipped the 8th in order for my doctor to see if there was any swelling on the morning of the 9th. Indeed there was so I started back up with 500 mg on the late evening of the 9th and ever since then.
So here is how it has been going:
I was really tired and yes I guess I will admit this, I started to piss my pants in my sleep on Wednesday morning. I was dreaming that I was at a restaurant and excused myself to go to the ladies room. When I dreamed I finished it seemed like I did not go. "Okay" I thought. "I will try to go again." This time however it felt all wrong and fortunately I woke up to realize what was happening. Therefore, I got up and went to the real bathroom and changed. That was about 9:30 am.
I went back to bed and awoke at 11:30 am. This time I could not get out of the damn bed. My right leg was numb and I could barely feel it! I had to twist around my foot, bend my knee, and work the leg until I had full feeling in it. Then I could stand up but I had to walk around to really get it working.
Thurday morning I awoke as a dang acne patch! I had a rash (like a heat rash) down the left side of my neck and spreading sparsely on my chest. Since then I have had welts develop all over my face.
Friday night after I took the medicine I looked like Rudolph the red nosed reindeer. SERIOUSLY!!! My nose became completely red in color as if it were sunburned.
I don't recall the specific days now (must have been Wednesday and Thursday), I tried to go for a run and I was completely exhausted and weak within minutes. I went for a run in a neighborhood near my house and I think I could only run for 5 minutes where I came upon the hiking trail. My lungs burned like fire and my legs felt like jello. Normally I can run on the easier parts of the trail but I felt all disoriented and my legs were really weak. I feared that with my disoriented vision and loss of leg strength that if I tripped I would not be able to catch myself. I worried that I could become badly hurt in the woods by myself.
Tonight will be sixth night taking the medicine so hopefully my body will become used to it again and some of these side effects will start to lessen. I really do want to do my run next weekend in the Relay so I hope my balance will be better.
Why am I awake right now? Training. lol the Relay for Life event is 22 hours. I will start with a cancer survivor lap at noon, my 3 mile run later in the early evening while it is still daylight, and walking in the evening when it is dark. I am bringing my tent there so that I can take naps.
Wednesday, May 10, 2006
Challenged by Faith
Yesterday I had another appointment with my neuro-ophthamalogist. For those who don't know and have NF2 or Acoustic Neuroma, a neuro-ophthamalogist will become a regular part of your medical care team. This type of doctor is not the same as an optomitrist or a regular ophthamalogist. A neuro-ophthamalogist is also board certified in neurology and has expertise in visual problems caused by brain tumors. An optomitrist is not trained to deal with the special concerns of NF2 and other brain tumor patients. They fit people for glasses and more pertinent matters and conditions are referred over to the ophthamalogists. However, most ophthamalogists are not familiar with vision problems caused by brain tumors and do not know what to look for. Therefore, it is important to find centers such as hospitals who have doctors who address these issues and also to look the board certifications of medical staff when choosing a doctor.
Alright blogger is acting kind of weird today. I started this post on Wednesday but never finished it. My appointment was on Tuesday May 9th. I have been having problems with my eyes where it felt like somebody unexpectedly lit a camera flash in my eyes temporarily blinding me. This was happening on a daily basis and seemed to occur when I was rising from a resting position (from lying down to sitting or from sitting to standing).
When it occured, I could not see and had to grab hold of something stationary for stability. Fortunately each episode did not last long. It seemed to dissipate in under a minute (within seconds). Basically when it happened, I had to stand there and wait for it to pass. I imagine if somebody was looking at me and noticed, it would appear that I had blanked (or spaced out) for a few seconds.
Here is the email I sent to my doctors on April 28th:
"My Major Concern: I am having visual disruptions where my field of vision is narrowed or blocked at periods of time. The effect is similar to the blinding one would experience after having a camera flash bulb go off in his/her eyes. This has been happening frequently (nearly everyday) since I started experiencing the headaches. I notice this occurs when I am rising from a sitting or resting position. The effects lasts for seconds and when it happens I need to grab something for bearing and stand there until I can see normally again. It seems to be more apparent in the right eye and I know my peripheral vision field is greatly decreased when this occurs.
I would feel much better having you look at my optic nerves now that I am off the Diamox and also administering another peripheral vision test to rule out possible swelling of the optic nerves again."
My neuro-ophthmalogist immediately responded and a sooner followup appointment was made. Seeing as I go to the UW Medical Eye Care Clinic which is also a teaching hospital, I am first seen by resident doctors. For the first time ever, I lost control and broke down once they left the room. There was nothing bad about the resident doctor and student, nor the captioner. She actually told me what I was expecting.....that my optic nerves were swelling again.
For whatever reason, it just all became too much and too overwhelming at the moment. I just totally let myself become disappointed. I wanted to believe that this was all going away and ending. I was tired of NF2 and did not want to deal with in anymore....NO MORE...IT TOOK ENOUGH!
When she told me the optic disk was swelling and that they needed to set up the periferal vision test, fear shivered my body. My thoughts were "Oh my God why is it swelling again? What if it does not stop? Will they have to open my head and do brain surgery afterall? Would I live? Would I become more messed up? Will I become blind?" It was a total snowball effect of fear and anxiety. The more I tried to suppress these feelings deep inside, the more it took over me and I could not control it.
Remember that I cannot cry. I lost the ability to form tears. I have not cried tears since probably October of 2004. I realy don't quite know how to explain what happens to me. I guess it is sort of a combination of the "trying not to cry but can't control it effect" coupled with hyperventilation and shaking. This episode was somewhat mild though. The poor captioner was a male and this was the first time I had him! He was the only one in the room with me and I think he asked me on three occassions if I was alright. I finally told him that I am not able to cry and sometimes I kind of hyperventilate. LOL I don't know if that offered him any relief. I crack up thinking about it now.
I did manage to calm down and maintain my composure by the time the medical staff entered the room again. I knew I had to stop shaking in order to take the test. Also, I knew I was starting to loose it and let my emotions get the best of me. I told myself that I walked through this thing with faith and that I had to trust it. I find this is often true of many things in general (that it does eventually work out but sometimes you are really run on the ringer or you feel like you are clinging to the edge).
Later the doctor came in and did agree that my optic nerves were swelling but it was a mild swelling (more of an increase on the side with the larger tumor). He instructed me to get back on the medicine again as it seems to be working in reducing the swelling.
I asked what were to happen if the swelling does not cease and if I would go blind. He said that there is always a risk that I could go blind but that it was unlikely. An option is to undergo surgery to reduce the pressure around the optic nerves but he did not think that it was something I needed at this time as the medicine seems to subdue the swelling and as of now it is mild. He did not know if and when the swelling will stop. I am a case where there just are not answers and he just did not know. It is simply a matter of hoping and praying...FAITH.
That afternoon I was a little down. I kept observing people and wondering about their lives. I have done this over the years when I have my moments. I watch people and wonder about their lives. I wonder if they realize how lucky they are to walk from point A to point B without even really having to think about it. Do they really know all the gifts they have? I contemplated their lives and my life. Does it even enter their minds that something like this could happen to them. Then I saw some people who looked like they could have been doctors. I wondered if there was anyone who was becoming a doctor or who was a doctor who became diagosed with NF2 or some other life altering or dehabilitating illness. Probably not NF2 or I or someone I know with NF2 would have heard about it. What would a doctor do if they found out they had NF2? What decisions would they make?
While distracted from my reading, I fell asleep in the sun on the flat black granite sculpture outside the hospital. When I awoke, I focused on the metal beam structures overhead. It was beautiful and I saw it in a way that I don't think I ever would had I not been in that position at that moment in time. It would have made a fantastic photo! I was amazed that I went to graduate school for 2 years at that University and had never even noticed the sculptures or place where I was sitting.
As the sun had changed position it became a little chilly on the side of the building where I was sitting. I decided to pay visit to the sun on the other side and sit in a park like area I had viewed from windows above but never took the time to visit. When I finally figured out how to get to the other side, there was a nice wooden arbor near some sculturesque built in the ground bird baths. It was all very artitically designed and the curves flowed from one structure to another. I found a nice place on the wood to sit in the sun and read.
After awhile I noticed that 4 birds had joined me at ground level (2 robins and 2 beautiful black birds with feathers that changed to purple, greem and brown in the sun....magpies?) The robins were a little shy and cautious. However, one of the black birds was a free spirit and did not seem to mind me at all. He (or she) came to edge of the water closest to me and took a bath in full splendor! It was an amazing site to watch the bird fully enjoying itself without minding me at all! The robins were still wary but did draw nearer. Soon the other black bird companion took part in the activity. I was completely glued and enjoyed watching them. I then thought to myself, had I not been in this moment and this time, I would have never witnessed this moment. Everyone else was busy scurrying about. It made me think about the many things I have had the opportunity to observe, reflect on, and enjoy, when I know I probably would not have the time to contemplate if none of this had ever happened to me.
Alright blogger is acting kind of weird today. I started this post on Wednesday but never finished it. My appointment was on Tuesday May 9th. I have been having problems with my eyes where it felt like somebody unexpectedly lit a camera flash in my eyes temporarily blinding me. This was happening on a daily basis and seemed to occur when I was rising from a resting position (from lying down to sitting or from sitting to standing).
When it occured, I could not see and had to grab hold of something stationary for stability. Fortunately each episode did not last long. It seemed to dissipate in under a minute (within seconds). Basically when it happened, I had to stand there and wait for it to pass. I imagine if somebody was looking at me and noticed, it would appear that I had blanked (or spaced out) for a few seconds.
Here is the email I sent to my doctors on April 28th:
"My Major Concern: I am having visual disruptions where my field of vision is narrowed or blocked at periods of time. The effect is similar to the blinding one would experience after having a camera flash bulb go off in his/her eyes. This has been happening frequently (nearly everyday) since I started experiencing the headaches. I notice this occurs when I am rising from a sitting or resting position. The effects lasts for seconds and when it happens I need to grab something for bearing and stand there until I can see normally again. It seems to be more apparent in the right eye and I know my peripheral vision field is greatly decreased when this occurs.
I would feel much better having you look at my optic nerves now that I am off the Diamox and also administering another peripheral vision test to rule out possible swelling of the optic nerves again."
My neuro-ophthmalogist immediately responded and a sooner followup appointment was made. Seeing as I go to the UW Medical Eye Care Clinic which is also a teaching hospital, I am first seen by resident doctors. For the first time ever, I lost control and broke down once they left the room. There was nothing bad about the resident doctor and student, nor the captioner. She actually told me what I was expecting.....that my optic nerves were swelling again.
For whatever reason, it just all became too much and too overwhelming at the moment. I just totally let myself become disappointed. I wanted to believe that this was all going away and ending. I was tired of NF2 and did not want to deal with in anymore....NO MORE...IT TOOK ENOUGH!
When she told me the optic disk was swelling and that they needed to set up the periferal vision test, fear shivered my body. My thoughts were "Oh my God why is it swelling again? What if it does not stop? Will they have to open my head and do brain surgery afterall? Would I live? Would I become more messed up? Will I become blind?" It was a total snowball effect of fear and anxiety. The more I tried to suppress these feelings deep inside, the more it took over me and I could not control it.
Remember that I cannot cry. I lost the ability to form tears. I have not cried tears since probably October of 2004. I realy don't quite know how to explain what happens to me. I guess it is sort of a combination of the "trying not to cry but can't control it effect" coupled with hyperventilation and shaking. This episode was somewhat mild though. The poor captioner was a male and this was the first time I had him! He was the only one in the room with me and I think he asked me on three occassions if I was alright. I finally told him that I am not able to cry and sometimes I kind of hyperventilate. LOL I don't know if that offered him any relief. I crack up thinking about it now.
I did manage to calm down and maintain my composure by the time the medical staff entered the room again. I knew I had to stop shaking in order to take the test. Also, I knew I was starting to loose it and let my emotions get the best of me. I told myself that I walked through this thing with faith and that I had to trust it. I find this is often true of many things in general (that it does eventually work out but sometimes you are really run on the ringer or you feel like you are clinging to the edge).
Later the doctor came in and did agree that my optic nerves were swelling but it was a mild swelling (more of an increase on the side with the larger tumor). He instructed me to get back on the medicine again as it seems to be working in reducing the swelling.
I asked what were to happen if the swelling does not cease and if I would go blind. He said that there is always a risk that I could go blind but that it was unlikely. An option is to undergo surgery to reduce the pressure around the optic nerves but he did not think that it was something I needed at this time as the medicine seems to subdue the swelling and as of now it is mild. He did not know if and when the swelling will stop. I am a case where there just are not answers and he just did not know. It is simply a matter of hoping and praying...FAITH.
That afternoon I was a little down. I kept observing people and wondering about their lives. I have done this over the years when I have my moments. I watch people and wonder about their lives. I wonder if they realize how lucky they are to walk from point A to point B without even really having to think about it. Do they really know all the gifts they have? I contemplated their lives and my life. Does it even enter their minds that something like this could happen to them. Then I saw some people who looked like they could have been doctors. I wondered if there was anyone who was becoming a doctor or who was a doctor who became diagosed with NF2 or some other life altering or dehabilitating illness. Probably not NF2 or I or someone I know with NF2 would have heard about it. What would a doctor do if they found out they had NF2? What decisions would they make?
While distracted from my reading, I fell asleep in the sun on the flat black granite sculpture outside the hospital. When I awoke, I focused on the metal beam structures overhead. It was beautiful and I saw it in a way that I don't think I ever would had I not been in that position at that moment in time. It would have made a fantastic photo! I was amazed that I went to graduate school for 2 years at that University and had never even noticed the sculptures or place where I was sitting.
As the sun had changed position it became a little chilly on the side of the building where I was sitting. I decided to pay visit to the sun on the other side and sit in a park like area I had viewed from windows above but never took the time to visit. When I finally figured out how to get to the other side, there was a nice wooden arbor near some sculturesque built in the ground bird baths. It was all very artitically designed and the curves flowed from one structure to another. I found a nice place on the wood to sit in the sun and read.
After awhile I noticed that 4 birds had joined me at ground level (2 robins and 2 beautiful black birds with feathers that changed to purple, greem and brown in the sun....magpies?) The robins were a little shy and cautious. However, one of the black birds was a free spirit and did not seem to mind me at all. He (or she) came to edge of the water closest to me and took a bath in full splendor! It was an amazing site to watch the bird fully enjoying itself without minding me at all! The robins were still wary but did draw nearer. Soon the other black bird companion took part in the activity. I was completely glued and enjoyed watching them. I then thought to myself, had I not been in this moment and this time, I would have never witnessed this moment. Everyone else was busy scurrying about. It made me think about the many things I have had the opportunity to observe, reflect on, and enjoy, when I know I probably would not have the time to contemplate if none of this had ever happened to me.
Tuesday, May 09, 2006
Fantasy Physical Therapy
I know I should be going to bed and that I need to wake early for a followup/checkup with my neuro-opthamologist, but I wanted to jot this down before it leaves my mind. Actually I have a plethora of things to write about but I am rather occupied right now.
If the sky was the limit and I could arrange absolutely anything I wanted in a physical therapy program here is what I would design:
If the sky was the limit and I could arrange absolutely anything I wanted in a physical therapy program here is what I would design:
- Treadmills to practice walking and running on a various speeds and inclines. In addition to the treadmill there would be a safety harness or bungee seat device to catch you if you trip, lose balance, and fall. There would be a second person (the therapist naturally) to operate the controls at your command. I found changing speeds and inclines is incredibly difficult at higher speeds if you are trying to hold on to both side bars of the treadmill to maintain balance and your eyes are jiggling around like crazy which inhibits reading the darn thing. Oh and of course the treadmill would be in a room the simulated the surroundings of the outdoors seeing as I can't hear (deaf) and I cannot read the captioning on a tv (due to oscillopsia).
- The facility would include a pool of ankle to knee depth which simulates the swiftness and power of a current in a river. In addition, the underwater terrain would include uneven footing such as river rocks. The therapist would hold ones hand and have a safety rope to pull the person up if they fall over.
- Of course there would be a regular swimming pool as well with lots of practice swimming with a mask and underwater as well as above. In depths of 4-5 feet the therapist would practice spotting the person with imbalance while the person shuts their eyes and tries adjusting to the orientation underwater and finding the surface with no mask. In addition, there would be practice learning to swim efficiently again and instruction and practice at treading water in depths exceeding 6 feet.
- There would be a nice flat track for rollerblading. Walkers with wheels and brakes would be available and practice on how to rollerblade again.
- An obstacle/hiking course would consist of uneven board walk about 3 feet in width which changes in 90 degree angles. Some boardwalk would be at ground level whereas some would be about 3 feet off the ground. A spotter is next to the physical therapy patient at all times in case of a fall or momentary loss of balance (those 90 degree turns are hard!!!!).
- Curbs in a straight line surrounded by sand or some other soft material would be installed outside. The patient would practice walking on the curb in a straight path.
- Paths of different materials (deep sand, rocks increasing in size to the size of large river rock) would be implemented. The person with imbalance would practice walking on these paths with poles, unaided and without a pack, with a pack and poles, and eventually with only a pack if possible. The pack size would change in weight as the person increased in strength and balance (starting at 10 pounds and possible increasing to 70 pounds).
- There would be a nice hiking path with smaller hills and a moderate grade. Crushed gravel is nice but not always available in real life. There would also be various hills for practicing on going up and coming down (going down is very difficult!).
- Stairs (heaven forbid they are scary). This would be a better indoor exercise if a harness can be attached. The idea is for the person to gain strength and practice going down stairs (going up is much better, much easier, and less fearful).
- Remember those rooms fulls of balls that you can jump into when you were a kid? Or even those big air filled things that kids jump around inside. Well these would serve a two fold purpose. First, from what I remember about them, they were hard to walk and balance on but you did not hurt yourself when you fell. These would be great for helping people work out the muscles needed for balance. Also, it would be interesting to use it as a similator for getting up on water skiies. I used to LOVE waterskiing. However, I no longer have the balance to stand up. In the simulator, there could be a device to mimic the tow rope behind a boat. A person could sit on the ground and practice standing up with the tow rope. If the person falls over, there is nice cushioning available.
Okay, I know I have given lots of thought to this but these are the main ones I remember at the moment. I have quite the imagination, don't I? Well it is time to hit the hay! Have a good night!
Monday, May 01, 2006
Riding on the Train
I told you that I wanted to write about the train ride over spring break. It was VERY long! I don't know if it can completely be attributed to NF2 or just antsiness for anyone. I do know that if I do not exercise or walk for 2 days it becomes incredibly challenging to walk straight and maintain balance. For this reason, I need to walk almost daily for an hour or more.
While on the train (if traveling from the west coast to the midwest), walking is not an option. Anticipating this dilemma, I went for a run earlier in the day that my train departed. That still did not solve the problem as I had leg cramps in the middle of the night that knotted up my calves. Fortunately I had some potassium supplements with me so the cramps would not be so bad.
My advice: if you are taking a train for a long distance (longer than a day), get a roommette car. My dad and I did not get one (there were none available) and we had to sleep in our seats. If you thought flying to Europe was long, trying being confined to a train seat for 43 hours! Sleeping in a coach train seat is comparable to sleeping in a Chevy Silverado truck seat. You know how truck seats do not recline all the way back so you are still sitting upright the whole time but just at a little reclined angel.
Of course in this position I could not sleep more than a couple hours and kept waking up. I was actually kind of lucky actually! If the person in front of me had his/her seat reclined, my feet just touched back of that seat. My dad however, has much longer legs and could not stretch them out. I can't even imagine!
If the train was not too packed, you could sit alone and try to sleep in fetal position in two seats next to each other. Even in this position, I continued to get leg cramps.
The second day on the train (after only a night) I thought I was going to go mad! When the train made one of the very few stops where you could get off and stretch out, I jumped at every chance. Aside from the dang smokers billowing practically all breathable air on the outside of the train, it felt good to get off and at least feel the cooler air. In the 10 minutes or less that you are given, I took the opportunity to walk as much as I could the length of the train and back.
Back on the train my legs became very agitated from being in one position for so long. To stretch them out I would try walking the isle of the train which was not a simple task. Surprisingly, I found the train to be more turbulent (yeah it is a joke) than a plane! If it was really bumpy I bounced down the isle clutching each seat and nearly landing on top of seated passengers.
I think one man thought I came from the dining car and was drunk. He laughed at me and try to say something. I, of course could not hear him because I am deaf and told him so. He then motioned something having to do with my wobbling and balance, then laughed again. I told him I had poor balance due to brain tumors. I hope he felt like an ass after that.
Once on stable ground during my visit, I had to walk everyday in order to regain and maintain balance and prepare for the long ride again a week later. The trip back did not seem as bad. I figured out that I could read better either at the seat or at a table. At certain points the scenic car bounced around too much which made reading very difficult with Oscillopsia. If sitting in the seats facing the window in the scenic car, there was more bouncing making it impossible to read a book! The trick is to be facing either the front or the back of the train (same position as the seats you are assigned to). We grabbed a table in the scenic car that was next to the wall and door. This seat to be the most stable in the scenic car and the table offered more stability for reading.
Oh yeah, one more tip: If you have a roommette there is room to stretch out (like actually do some stretching). Also, it is very hard to maintain balance in the bathrooms. It is best to go down there when the train makes a stop and is still. Think of going in a bouncing honey bucket at opposed to a stable one. With balance disfuntion, it is hard enough (if you are a woman) to hover above a public toilet or outdoor john anyway. Boy I could tell you a slew about my bathroom balancing act adventures!
While on the train (if traveling from the west coast to the midwest), walking is not an option. Anticipating this dilemma, I went for a run earlier in the day that my train departed. That still did not solve the problem as I had leg cramps in the middle of the night that knotted up my calves. Fortunately I had some potassium supplements with me so the cramps would not be so bad.
My advice: if you are taking a train for a long distance (longer than a day), get a roommette car. My dad and I did not get one (there were none available) and we had to sleep in our seats. If you thought flying to Europe was long, trying being confined to a train seat for 43 hours! Sleeping in a coach train seat is comparable to sleeping in a Chevy Silverado truck seat. You know how truck seats do not recline all the way back so you are still sitting upright the whole time but just at a little reclined angel.
Of course in this position I could not sleep more than a couple hours and kept waking up. I was actually kind of lucky actually! If the person in front of me had his/her seat reclined, my feet just touched back of that seat. My dad however, has much longer legs and could not stretch them out. I can't even imagine!
If the train was not too packed, you could sit alone and try to sleep in fetal position in two seats next to each other. Even in this position, I continued to get leg cramps.
The second day on the train (after only a night) I thought I was going to go mad! When the train made one of the very few stops where you could get off and stretch out, I jumped at every chance. Aside from the dang smokers billowing practically all breathable air on the outside of the train, it felt good to get off and at least feel the cooler air. In the 10 minutes or less that you are given, I took the opportunity to walk as much as I could the length of the train and back.
Back on the train my legs became very agitated from being in one position for so long. To stretch them out I would try walking the isle of the train which was not a simple task. Surprisingly, I found the train to be more turbulent (yeah it is a joke) than a plane! If it was really bumpy I bounced down the isle clutching each seat and nearly landing on top of seated passengers.
I think one man thought I came from the dining car and was drunk. He laughed at me and try to say something. I, of course could not hear him because I am deaf and told him so. He then motioned something having to do with my wobbling and balance, then laughed again. I told him I had poor balance due to brain tumors. I hope he felt like an ass after that.
Once on stable ground during my visit, I had to walk everyday in order to regain and maintain balance and prepare for the long ride again a week later. The trip back did not seem as bad. I figured out that I could read better either at the seat or at a table. At certain points the scenic car bounced around too much which made reading very difficult with Oscillopsia. If sitting in the seats facing the window in the scenic car, there was more bouncing making it impossible to read a book! The trick is to be facing either the front or the back of the train (same position as the seats you are assigned to). We grabbed a table in the scenic car that was next to the wall and door. This seat to be the most stable in the scenic car and the table offered more stability for reading.
Oh yeah, one more tip: If you have a roommette there is room to stretch out (like actually do some stretching). Also, it is very hard to maintain balance in the bathrooms. It is best to go down there when the train makes a stop and is still. Think of going in a bouncing honey bucket at opposed to a stable one. With balance disfuntion, it is hard enough (if you are a woman) to hover above a public toilet or outdoor john anyway. Boy I could tell you a slew about my bathroom balancing act adventures!
Swimming in the pool
A few weeks ago Harley and I went swimming at the gym pool one weekend. While I am not able to to swim laps quite fluently and to do the lap lane change (you know that summersault thing that turns you the other direct), I am quite comfortable in the water. I have to admit that I prefer to be swimming under the water with a mask and snorkel than on top of the water without.
It is hard to do the crawl stroke without a mask when there are other people in the pool. When there is a little wave action from other people it is very difficult to balance while standing or to swim straight. I also seem to sink more now than float and when I was trying to do the crawl I ended up swallowing lots of water. The turning of the head back and forth in the crawl stroke disorients me so I have to keep my head straight forward and to also use goggles because I can't close my eyes. If I were to close my eyes I would lose all orientation. In addition, I cannot create a tight seal on my right eye and I would get lots of chlorine in it.
I actually practiced kicking on a kick board and also swimming with a mask and snorkel with my head down. I just LOVE having a mask and snorkel. As long as I am wearing a mask, I can do 6 complete summersaults in one breath. Without a mask I cannot complete 0ne summersault and need assistance to find the surface. It seemed easier to find the surface on my own this time than last summer.
I still really love the water. When I was home a week ago I wanted to waterski again if the water was not so cold. I remember how to do all these things, my body just does not balance. I wondered if I could relearn it somehow and make my body waterski again. I always liked waterskiing over tubing. I have never been much of a tubing fan.
This was our first time in the pool for the year. The last time I was in the pool was on our trip to Arizona. I think we were in the pool 2 or 3 times that vacation (in October) and in the pool 3 times in August when we went to Canada. I am really hoping to go snorkeling in June when we go on our cruise. It would seem a sin to not snorkel in the caribbean! I would love to dive but I have not tried it out again yet. If I cannot dive, there are some tourist submarines to be had in Grand Cayman and Cozumel.
It is hard to do the crawl stroke without a mask when there are other people in the pool. When there is a little wave action from other people it is very difficult to balance while standing or to swim straight. I also seem to sink more now than float and when I was trying to do the crawl I ended up swallowing lots of water. The turning of the head back and forth in the crawl stroke disorients me so I have to keep my head straight forward and to also use goggles because I can't close my eyes. If I were to close my eyes I would lose all orientation. In addition, I cannot create a tight seal on my right eye and I would get lots of chlorine in it.
I actually practiced kicking on a kick board and also swimming with a mask and snorkel with my head down. I just LOVE having a mask and snorkel. As long as I am wearing a mask, I can do 6 complete summersaults in one breath. Without a mask I cannot complete 0ne summersault and need assistance to find the surface. It seemed easier to find the surface on my own this time than last summer.
I still really love the water. When I was home a week ago I wanted to waterski again if the water was not so cold. I remember how to do all these things, my body just does not balance. I wondered if I could relearn it somehow and make my body waterski again. I always liked waterskiing over tubing. I have never been much of a tubing fan.
This was our first time in the pool for the year. The last time I was in the pool was on our trip to Arizona. I think we were in the pool 2 or 3 times that vacation (in October) and in the pool 3 times in August when we went to Canada. I am really hoping to go snorkeling in June when we go on our cruise. It would seem a sin to not snorkel in the caribbean! I would love to dive but I have not tried it out again yet. If I cannot dive, there are some tourist submarines to be had in Grand Cayman and Cozumel.
Sunday, April 30, 2006
A little catch up!
Ok. I have gotten behind again. Aside from class starting and trying to run/walk daily, I have been spending some quality time trying to recruit people for the Relay for Life and sending out emails about my participation. But that is another story I will hopefully get to later.
When I returned from the visit to my parents the weekend after Easter, my computer started acting up again. One day it was shut off completely and would not come back on! Harley had to switch it around with another machine we had lying around. Then it was incredibly slow and kept locking up. Harley informed me today after tweaking it, that the memory chip had to be replaced. Then last night for some unknown reason the keyboard stopped working and my attempts to plug it back in proved futile. I still am unsure how he got the keyboard to work again.
Without my keyboard I am up a creek without a paddle as I cannot type on a laptop or standard keyboard. I use an ergonomic keyboard. So if you got a very strange email from me this week which was garbled and had numerous typos, you know the reason why. I tend not to type or email much when that happens. And yes, I have lost dexterity due to the NF2. My fingers don't function as well as they used to and my fingertips are numb. It has been posed that this may be due to some nerve damage in my brain or neuropathy as a long term side effect of the chemotherapy I had when I was 21. Today I noticed blood on various things and discovered that I had cut the tip of my thumb somehow and did not know it.
I am seriously considering auditing my final ASL class. I made the decision this week when things started becoming more frustrating for me. I am sure I could somehow muddle though it and get a decent grade but it would involve more work and time than I really want or have to commit.
I am beginning to feel kind of like the odd duck as everyone else is hearing and most are in the interpreter training program. There is one other guy who is deaf but he went to a deaf institution and is very fluent in ASL. He is taking the class because he wants to become a teacher and transfer to Galluadet (the exclusively deaf college in the US).
With my lower visual acuity, dexterity problems, and hampered memory, it is very hard to keep up with the other students. I felt like a total fool the other day in lab. We had another instructor filling in and I misunderstood what he was asking me. I was very concerned about rerecording my signed version of the pledge of allegiance. Thus I confused the sign "copy" with the sign "record". I know the signs but sometimes my brain has a hard time sorting out things if the signing is quick or I feel somewhat stressed.
I thought he asked "who needs to record still?" when he was actually asking "who needs to copy still?" I raised my hand and then turned to figure out how to turn the video camera on at the desk. I was a little frustrated because the buttons were small and I could not shove my head back there enough to read them.
Finally I figured out what must be the logical button to turn the dang thing on. I looked at the TV screen to see if it worked and I did indeed find myself on the monitor. Then I needed to angle it correctly so I was centered on the screen.
All of a sudden I felt someone tapping me on the shoulder and the person asks in sign "Why are you recording yourself?" with a very confused look. I turn to see everyone looking at me. I had a moment of confusion as I looked around and nobody else was recording themselves. Then I noticed that it appeared everyone was waiting on me.
I can't remember how, but I realized that I misunderstood and everyone was waiting for me to get my tape ready because they thought I had to copy the video that plays on everyone's tv (our assignment which is the same but there are not enough vcrs for the whole class to tape the assignment the first time through). Talk about feeling like a boob!
Anyhow, each week we watch what is called a "receptive translation" or RT where we have to interpret a story that a deaf person signs in ASL. Last quarter I could do fairly well on them after watching most videos over and over again. However, the stories have been short until now. Last Monday I watched the RT over and over again in slow motion and I was still not able to answer all the questions about the translation.
This week I felt like my eyeballs were going to fall out of my damn skull! My biggest weakness is trying to read deaf fingerspelling. I can sort of figure it out if I have lots of context, watch it repetitively, and logically figure it out using the topic and whatever letters I can read. Wouldn't you know it? The darn translation this week is about FINGERSPELLING! The lady in the video fingerspelled numerous words and of course the topic was FINGERSPELLING. We were supposed to create a mental map to have stamped but the instructor wrote on the board the only things I actually understood! Further, this seemed to be the longest signed story we ever had to watch. I just could not handle watching someone fingerspell things for that long. To watch it in slow motion over and over again would take up hours! I did not have that kind of time to figure it out and make a map in the last few 10-15 minutes of class.
Other people can watch it once and pretty much get the gist of most of it. I on the otherhand, have to watch it again and again and for each fingerspelled word I have to keep repeating the video in slow motion.
This is what it is like: pretend you are listening to a cellphone message from someone who speaks German. You only know German you learned in high school which is not the fluent use of the language. Then the person on the other end is not only fluent in German but speaks at the speed of lighting! Ah but that is not all! Your further complication is that you have a bad cellphone connection and pieces of your conversation keep getting cut out. Your job is to decipher what the German person is saying (and NO you cannot speak to the person on the other end. You can only listen to the recorded message over and over again).
I still want to stay in the class I just do not want to stress over the competition of a grade. The frustration of worrying over a grade and comparing myself to the other students I think will make me resentful of my deafness. To be honest I sometimes pity myself or get angry that this is not my choice. All the other people taking it (for the most part) still have their hearing, have an absolute love of the language, and posess very good receptive skill and dexterity. I don't have any of those. If I was hearing I would not be going to school to become an interpreter (not because I don't like the language but because it is not my forte). People who become interpreters SHOULD be very good at it as interpreting is a VERY important job.
I don't want to have a negative attitude about it or to start getting in a mood of feeling sorry for myself. That is my main reason for wanting to audit. In addition, with spring here, I have several things that I need or want to commit to (keeping myself healthy with daily exercise, running or walking in what I see as good causes in the community, helping Harley with priorities we need to accomplish, helping with our remodeling and yard projects, and of course all the things that I was responsible or did before these new tasks).
That is what is on my mind right now.
When I returned from the visit to my parents the weekend after Easter, my computer started acting up again. One day it was shut off completely and would not come back on! Harley had to switch it around with another machine we had lying around. Then it was incredibly slow and kept locking up. Harley informed me today after tweaking it, that the memory chip had to be replaced. Then last night for some unknown reason the keyboard stopped working and my attempts to plug it back in proved futile. I still am unsure how he got the keyboard to work again.
Without my keyboard I am up a creek without a paddle as I cannot type on a laptop or standard keyboard. I use an ergonomic keyboard. So if you got a very strange email from me this week which was garbled and had numerous typos, you know the reason why. I tend not to type or email much when that happens. And yes, I have lost dexterity due to the NF2. My fingers don't function as well as they used to and my fingertips are numb. It has been posed that this may be due to some nerve damage in my brain or neuropathy as a long term side effect of the chemotherapy I had when I was 21. Today I noticed blood on various things and discovered that I had cut the tip of my thumb somehow and did not know it.
I am seriously considering auditing my final ASL class. I made the decision this week when things started becoming more frustrating for me. I am sure I could somehow muddle though it and get a decent grade but it would involve more work and time than I really want or have to commit.
I am beginning to feel kind of like the odd duck as everyone else is hearing and most are in the interpreter training program. There is one other guy who is deaf but he went to a deaf institution and is very fluent in ASL. He is taking the class because he wants to become a teacher and transfer to Galluadet (the exclusively deaf college in the US).
With my lower visual acuity, dexterity problems, and hampered memory, it is very hard to keep up with the other students. I felt like a total fool the other day in lab. We had another instructor filling in and I misunderstood what he was asking me. I was very concerned about rerecording my signed version of the pledge of allegiance. Thus I confused the sign "copy" with the sign "record". I know the signs but sometimes my brain has a hard time sorting out things if the signing is quick or I feel somewhat stressed.
I thought he asked "who needs to record still?" when he was actually asking "who needs to copy still?" I raised my hand and then turned to figure out how to turn the video camera on at the desk. I was a little frustrated because the buttons were small and I could not shove my head back there enough to read them.
Finally I figured out what must be the logical button to turn the dang thing on. I looked at the TV screen to see if it worked and I did indeed find myself on the monitor. Then I needed to angle it correctly so I was centered on the screen.
All of a sudden I felt someone tapping me on the shoulder and the person asks in sign "Why are you recording yourself?" with a very confused look. I turn to see everyone looking at me. I had a moment of confusion as I looked around and nobody else was recording themselves. Then I noticed that it appeared everyone was waiting on me.
I can't remember how, but I realized that I misunderstood and everyone was waiting for me to get my tape ready because they thought I had to copy the video that plays on everyone's tv (our assignment which is the same but there are not enough vcrs for the whole class to tape the assignment the first time through). Talk about feeling like a boob!
Anyhow, each week we watch what is called a "receptive translation" or RT where we have to interpret a story that a deaf person signs in ASL. Last quarter I could do fairly well on them after watching most videos over and over again. However, the stories have been short until now. Last Monday I watched the RT over and over again in slow motion and I was still not able to answer all the questions about the translation.
This week I felt like my eyeballs were going to fall out of my damn skull! My biggest weakness is trying to read deaf fingerspelling. I can sort of figure it out if I have lots of context, watch it repetitively, and logically figure it out using the topic and whatever letters I can read. Wouldn't you know it? The darn translation this week is about FINGERSPELLING! The lady in the video fingerspelled numerous words and of course the topic was FINGERSPELLING. We were supposed to create a mental map to have stamped but the instructor wrote on the board the only things I actually understood! Further, this seemed to be the longest signed story we ever had to watch. I just could not handle watching someone fingerspell things for that long. To watch it in slow motion over and over again would take up hours! I did not have that kind of time to figure it out and make a map in the last few 10-15 minutes of class.
Other people can watch it once and pretty much get the gist of most of it. I on the otherhand, have to watch it again and again and for each fingerspelled word I have to keep repeating the video in slow motion.
This is what it is like: pretend you are listening to a cellphone message from someone who speaks German. You only know German you learned in high school which is not the fluent use of the language. Then the person on the other end is not only fluent in German but speaks at the speed of lighting! Ah but that is not all! Your further complication is that you have a bad cellphone connection and pieces of your conversation keep getting cut out. Your job is to decipher what the German person is saying (and NO you cannot speak to the person on the other end. You can only listen to the recorded message over and over again).
I still want to stay in the class I just do not want to stress over the competition of a grade. The frustration of worrying over a grade and comparing myself to the other students I think will make me resentful of my deafness. To be honest I sometimes pity myself or get angry that this is not my choice. All the other people taking it (for the most part) still have their hearing, have an absolute love of the language, and posess very good receptive skill and dexterity. I don't have any of those. If I was hearing I would not be going to school to become an interpreter (not because I don't like the language but because it is not my forte). People who become interpreters SHOULD be very good at it as interpreting is a VERY important job.
I don't want to have a negative attitude about it or to start getting in a mood of feeling sorry for myself. That is my main reason for wanting to audit. In addition, with spring here, I have several things that I need or want to commit to (keeping myself healthy with daily exercise, running or walking in what I see as good causes in the community, helping Harley with priorities we need to accomplish, helping with our remodeling and yard projects, and of course all the things that I was responsible or did before these new tasks).
That is what is on my mind right now.
What does adaptation mean to you?
I just finished watching the movie "Murderball" which is a true documentary about the wheelchair rugby competition in the world paralympics. If you are feeling down and out for whatever reason (even albeit trivial) I highly recommend you watch this inspirational film. Heck, even if you are as happy as a tart and everything is going just grand, I still think everyone should watch this movie to get a better perspective on life.
I have to admit at times the language can be harsh (sensor children) but it is definitely real. People who have character, perserverence, and endure hardship are only human afterall.
One particular narration touched my heart and I could very distantly relate to his experience in my own way. The man lost his limbs (arms, hands, and legs) at about the age of 9 due to a very rare form of early meningitis infection. He describes a dream he was having where he was flying all over like a bird. In his dream, he could see himself with real limbs (arms, legs, hands and all). He said the dream was so real that he did not want to wake up from it. After his statement I could read the slight reminisce of grief and sadness in his eyes. He is happy and functions better than probably most able bodied people. Yet there are still moments of reflecting back over the person before his illness.
I too have had dreams about who I was before but I dreamed that I was doing those things now. The dreams were fantastic and I did not want to wake either. I have had many dreams but a few that were most vivid were of driving my motorcycle (which sits in the garage) along a long stretch of beach, rollerblading for miles, and returning to where I grew up in Michigan and riding against the sunset on my 10 speed bike like I often did as a teen.
I have also had dreams of listening to music that I swear was real if I had not been in a state of unconsciousness. It is funny also because I have dreams where I tell people that I am deaf, yet in my dream I am still able to hear sounds.
There was another player who described when he first came home from the hospital as a quadriplegic. He had played soccer for a college team and had been a very active person. At home he would look at pictures of himself playing sports and able bodied. It was then that the reality started to set in for him that things were going to be different. He was not going to go back to same person he was before.
I too looked and still look at photos of things I used to be able to do. Back in October I saw a picture of myself skipping from rock to rock (large ones) over a river in the Alps of Italy. It was horrifying and surreal to realize that was me just a couple years ago. It is a stunning realization that I am changed and cannot go back.
I think all people who suddenly endure a physical or mental challenge such as NF2, losing a sensation, or losing full physical ability have moments of being human. It is only natural to feel that way.
In the documentary, each of the athletes who had been subjected to a spinal cord injury, made a conscious choice to continue on and develop a quality life. They are not able to do the same things the same way as before but they have learned to adapt and survive.
I have read of different celebrities who have undergone their own burdens (Christopher Reeve with spinal cord injury, Michael J Fox with Parkinson's disease, and Melissa Etheridge with Breast Cancer just to name a few). I have come to find a common connection between these athletes and the above mentioned celebrities. Although they have openly admitted that their circumstance was not choosen nor a walk in the park , they have all felt they became better people and their lives have been enhanced because of it. They all made a conscious decision, to pick themselves up from their wallow and to continue making the best of what they have.
Yes, although I am only human and do have moments of swearing out of frustration and self pity, I too choose to have a quality life. While I may not be able to go back to the same things I had before (good balance, nondistorted vision, hearing and very good memory), I am finding ways to adjust and do things differently. I have learned that life is about adaptation if ones seeks out happiness and contentment. One must learn to change with the ebb and flood of the tides.
I have to admit at times the language can be harsh (sensor children) but it is definitely real. People who have character, perserverence, and endure hardship are only human afterall.
One particular narration touched my heart and I could very distantly relate to his experience in my own way. The man lost his limbs (arms, hands, and legs) at about the age of 9 due to a very rare form of early meningitis infection. He describes a dream he was having where he was flying all over like a bird. In his dream, he could see himself with real limbs (arms, legs, hands and all). He said the dream was so real that he did not want to wake up from it. After his statement I could read the slight reminisce of grief and sadness in his eyes. He is happy and functions better than probably most able bodied people. Yet there are still moments of reflecting back over the person before his illness.
I too have had dreams about who I was before but I dreamed that I was doing those things now. The dreams were fantastic and I did not want to wake either. I have had many dreams but a few that were most vivid were of driving my motorcycle (which sits in the garage) along a long stretch of beach, rollerblading for miles, and returning to where I grew up in Michigan and riding against the sunset on my 10 speed bike like I often did as a teen.
I have also had dreams of listening to music that I swear was real if I had not been in a state of unconsciousness. It is funny also because I have dreams where I tell people that I am deaf, yet in my dream I am still able to hear sounds.
There was another player who described when he first came home from the hospital as a quadriplegic. He had played soccer for a college team and had been a very active person. At home he would look at pictures of himself playing sports and able bodied. It was then that the reality started to set in for him that things were going to be different. He was not going to go back to same person he was before.
I too looked and still look at photos of things I used to be able to do. Back in October I saw a picture of myself skipping from rock to rock (large ones) over a river in the Alps of Italy. It was horrifying and surreal to realize that was me just a couple years ago. It is a stunning realization that I am changed and cannot go back.
I think all people who suddenly endure a physical or mental challenge such as NF2, losing a sensation, or losing full physical ability have moments of being human. It is only natural to feel that way.
In the documentary, each of the athletes who had been subjected to a spinal cord injury, made a conscious choice to continue on and develop a quality life. They are not able to do the same things the same way as before but they have learned to adapt and survive.
I have read of different celebrities who have undergone their own burdens (Christopher Reeve with spinal cord injury, Michael J Fox with Parkinson's disease, and Melissa Etheridge with Breast Cancer just to name a few). I have come to find a common connection between these athletes and the above mentioned celebrities. Although they have openly admitted that their circumstance was not choosen nor a walk in the park , they have all felt they became better people and their lives have been enhanced because of it. They all made a conscious decision, to pick themselves up from their wallow and to continue making the best of what they have.
Yes, although I am only human and do have moments of swearing out of frustration and self pity, I too choose to have a quality life. While I may not be able to go back to the same things I had before (good balance, nondistorted vision, hearing and very good memory), I am finding ways to adjust and do things differently. I have learned that life is about adaptation if ones seeks out happiness and contentment. One must learn to change with the ebb and flood of the tides.
Friday, April 21, 2006
Other things I want to talk about but don't have time right now.
There are some other things I want to post about but I am leaving to my parents home in Central Washington tomorrow.
- My reason for my recent absence of posts the last week is that I have been working on my latest project. I will be participating in the Relay for Life event for the first time to raise awareness and support for the American Cancer Society. I have been trying to recruit people and running more often.
- For me and others with NF2 or who may be going through some type of treatment for an illness, it is important to exercise everyday. The diseases or treatments can have a degenerative effect on the body. If I miss more than a day of walking, it becomes hard for me to maintain a sense of balance and I stumble more.
- Leg cramps and riding on the train.
Mental Blocks and Other Notes
I have read of others with brain tumors, surgery, or head trama as having memory problems. Yes sometimes I have those now which I never had before (seems to be with short term memory loss).
Maybe I will write more about it later. For now I just want to make a small note to remember to tell the doctor.
Over the past week or two simple little things I would get stuck on or could not remember. For example, in a couple incidences I could not remember someone's last name when it was somebody I knew. I had a sort of brain block and then it came to me like hours or a day later. The most signifcant this week however is that I had difficulty with the multiplication tables.
For the life of me, I struggled one day to figure out the answer to 7 times 9. I could not figure it out! I had to think of the answers to 8*9, 7*8, 6*9, etc. to figure out the answer! And no I am not a mathematically challenged person who never made it past algebra. I have a science degree and had to take chemistry and physics! I can still remember my locker combination from junior high school but the other day I could not remember 7*9!
I have made a habit to use my dictionary regularily since treatment and it appears now that a calculator needs to be part of my everyday repetoire.
I did notice more of a challenge with math while grocery shopping over the last year.
Another recent oddity that I forgot to mention:
I am uncertain to decribe it but the best I can relate it to is when a flashbulb goes off in your eye when you are unprepared or when you get up too fast and become lightheaded and nearly blackout. Hmnn, that sounds kind of extreme. What I am trying to describe are moments when I get up and I feel almost blinded in the one eye. I was feeling weird when this happened and started closing my left eye and noticed my field of vision in the right becoming narrowed or momentarily blinded as if I had stared into the flash of a camera. It does not last long (few seconds) and seems to happen when I get up from a sitting position.
Okay I have to say goodbye to the blog tonight because I am way too tired.
Maybe I will write more about it later. For now I just want to make a small note to remember to tell the doctor.
Over the past week or two simple little things I would get stuck on or could not remember. For example, in a couple incidences I could not remember someone's last name when it was somebody I knew. I had a sort of brain block and then it came to me like hours or a day later. The most signifcant this week however is that I had difficulty with the multiplication tables.
For the life of me, I struggled one day to figure out the answer to 7 times 9. I could not figure it out! I had to think of the answers to 8*9, 7*8, 6*9, etc. to figure out the answer! And no I am not a mathematically challenged person who never made it past algebra. I have a science degree and had to take chemistry and physics! I can still remember my locker combination from junior high school but the other day I could not remember 7*9!
I have made a habit to use my dictionary regularily since treatment and it appears now that a calculator needs to be part of my everyday repetoire.
I did notice more of a challenge with math while grocery shopping over the last year.
Another recent oddity that I forgot to mention:
I am uncertain to decribe it but the best I can relate it to is when a flashbulb goes off in your eye when you are unprepared or when you get up too fast and become lightheaded and nearly blackout. Hmnn, that sounds kind of extreme. What I am trying to describe are moments when I get up and I feel almost blinded in the one eye. I was feeling weird when this happened and started closing my left eye and noticed my field of vision in the right becoming narrowed or momentarily blinded as if I had stared into the flash of a camera. It does not last long (few seconds) and seems to happen when I get up from a sitting position.
Okay I have to say goodbye to the blog tonight because I am way too tired.
Tomorrow's Visit with Dr. V
As you know, my recent MRI was on April 10th. The one prior to that was October 25th. Unexpectedly, I got the MRI report/results in the mail on Saturday. I wish I had my scanner hooked up so I could just post it on here for you. Basically in a nutshell it said there was no change. Things seem stable yet I have to admit that I sometimes block out or get carried away on a fantasty and forget what is going on in my head.
I have a small confession: Last week (maybe Wednesday) I peaked at the few films I managed to talk the tech into making for me. The first ones seemed not bad but then I got into the nit and grit of it. For some reason I had forgotten about the other tumors and was just thinking I had one. Maybe because we are just focusing on one. I mean of course I knew there were more but I was only thinking of two others. When I looked at the film, the image of my brain looked as if someone dropped blotches of white paint all over it (some of them looking rather large). I saw my distorted brainstem and the tumors mushroomed out around it.
Now this is nothing new, but I just forgot how it looked and was expecting to see a near clean brain. I have to admit the image sent a shiver of horror down my spine and I had to quickly put it away and try to forget it. You know the say "Curiousity killed the cat". Well I did not want to be THAT cat!
Even though my brain is a scary site it is all good.
I saw the eye doctor in March and he said my optic nerves are now stable and not swelling. Thus he took me off of the Diamox medication that I have been on for a year. I recall going off just before my trip to Michigan. My instructions were to monitor my condition. If I had really bad headaches I would need to start the medicine again.
While I may have had a mild headache the first day or two, I don't recall having any on my trip. However, last friday the headaches began. It is hard for me to monitor and know what would be a headache due to the brain tumors or something like an allergy. I had one every morning which generally came between the hours of 4 and 5 am. Thinking back now, I guess they were pretty bad and interupted my sleep. I have been nursing them with IB profen thinking it is just and adjustment period off the medication.
Yesterday I got a really bad one that was one heck of a migrane! (The others I thought might have been because it was dry in the house and I got too dried out while I was sleeping.) It happened after my run. I ran the furthest I have fun since before my treatment in 2004. I just felt like running. It was really hard because I was kind of stiff but I just kept going.
Originally I was thinking that I would run out far and walk back. Yet when I got to the turning point, I realized I was going to have to run back in order to get the truck home in time for Harley to go to work. I ran nearly the whole distance but allowed myself enough time for a 10-15 minute cool down walk. The total time I was gone was for an hour. When I jumped in my truck and started driving home, a searing pain jabbed at my sinus cavity, then the back of my head, and then behind my right eye. It was so bad that when I stopped at the mailbox, I threw up black puke which scared me even more!
I had not eaten in 6 hours and only had one meal. Thus I scarfed a couple large spoonfuls of cottage cheese so I could down some excedrin and get relief. While going to the bathroom, I burped black barf and cottage cheese on myself again. I spoke to my mom on the computer and within a half hour the headache seemed to dissipate and the odd black vomit no longer returned.
For my appointment tomorrow I need to remember these incidences so that I can inform the doctor. For most of the week I had headaches that occured in the early morning. I have also had nose bleeds (had one today) which I thought was attributed to the dryness in the house. On the flipside, my nose runs like a dang sieve while outside running or walking. It actually started to drip Tuesday at class and I could not feel it. A classmate pointed it out to me and I was unsure if it had started bleeding again. I also had a mild headache and felt somewhat nauseated and uncomfortable as a passenger in the carpool ride to Seattle on Tuesday. Yet it was a warm day and the sun was bearing down on me (I used to get carsick as a kid in the same scenario).
I have a small confession: Last week (maybe Wednesday) I peaked at the few films I managed to talk the tech into making for me. The first ones seemed not bad but then I got into the nit and grit of it. For some reason I had forgotten about the other tumors and was just thinking I had one. Maybe because we are just focusing on one. I mean of course I knew there were more but I was only thinking of two others. When I looked at the film, the image of my brain looked as if someone dropped blotches of white paint all over it (some of them looking rather large). I saw my distorted brainstem and the tumors mushroomed out around it.
Now this is nothing new, but I just forgot how it looked and was expecting to see a near clean brain. I have to admit the image sent a shiver of horror down my spine and I had to quickly put it away and try to forget it. You know the say "Curiousity killed the cat". Well I did not want to be THAT cat!
Even though my brain is a scary site it is all good.
I saw the eye doctor in March and he said my optic nerves are now stable and not swelling. Thus he took me off of the Diamox medication that I have been on for a year. I recall going off just before my trip to Michigan. My instructions were to monitor my condition. If I had really bad headaches I would need to start the medicine again.
While I may have had a mild headache the first day or two, I don't recall having any on my trip. However, last friday the headaches began. It is hard for me to monitor and know what would be a headache due to the brain tumors or something like an allergy. I had one every morning which generally came between the hours of 4 and 5 am. Thinking back now, I guess they were pretty bad and interupted my sleep. I have been nursing them with IB profen thinking it is just and adjustment period off the medication.
Yesterday I got a really bad one that was one heck of a migrane! (The others I thought might have been because it was dry in the house and I got too dried out while I was sleeping.) It happened after my run. I ran the furthest I have fun since before my treatment in 2004. I just felt like running. It was really hard because I was kind of stiff but I just kept going.
Originally I was thinking that I would run out far and walk back. Yet when I got to the turning point, I realized I was going to have to run back in order to get the truck home in time for Harley to go to work. I ran nearly the whole distance but allowed myself enough time for a 10-15 minute cool down walk. The total time I was gone was for an hour. When I jumped in my truck and started driving home, a searing pain jabbed at my sinus cavity, then the back of my head, and then behind my right eye. It was so bad that when I stopped at the mailbox, I threw up black puke which scared me even more!
I had not eaten in 6 hours and only had one meal. Thus I scarfed a couple large spoonfuls of cottage cheese so I could down some excedrin and get relief. While going to the bathroom, I burped black barf and cottage cheese on myself again. I spoke to my mom on the computer and within a half hour the headache seemed to dissipate and the odd black vomit no longer returned.
For my appointment tomorrow I need to remember these incidences so that I can inform the doctor. For most of the week I had headaches that occured in the early morning. I have also had nose bleeds (had one today) which I thought was attributed to the dryness in the house. On the flipside, my nose runs like a dang sieve while outside running or walking. It actually started to drip Tuesday at class and I could not feel it. A classmate pointed it out to me and I was unsure if it had started bleeding again. I also had a mild headache and felt somewhat nauseated and uncomfortable as a passenger in the carpool ride to Seattle on Tuesday. Yet it was a warm day and the sun was bearing down on me (I used to get carsick as a kid in the same scenario).
Thursday, April 20, 2006
HAPPY BELATED EASTER!
BAUK! BAUK! (that is supposed to be the sound of a kid in a chicken costume.....remember that commerical for some type of candy like m&ms or Cadbury eggs where that little boy is dressed in a chicken suit and says "Thanks Easter Bunny! Bauk! Bauk!) LOL anyway I always think of that during Easter.)
I hope you all had a nice holiday weekend. Harley was working but I did manage to have a nice weekend. When I walked the dogs at the park on Saturday it started pouring. However, when I drove down Ames Lake to the main highway (or is it a road?), the sun came bursting out and I was treated to a nice rainbow.
On Easter I did not color any eggs but I had a beautiful assortment of fake eggs that I hid around the house with little messages inside. Each message was a clue to where the next one would be hidden (leading up to Harley's basket of fudge eggs and a chocolate bunny that I bought at Saykllys candy store in Escanaba, MI) and most dealt with some aspect of our travels, wedding, and relationship together. Harley was so surprised! He was like a big kid! LOL It was so much fun to think of good hiding places and remember things about our journey together. We have been together for 11 years and this was the 5th Easter since we were married.
I must confess that my idea was not original. Back on Valentine's day of 1997, Harley made a scavenger hunt for me. He had written in calligraphy on lace paper hearts little poems and clues about our good times together. Each clue leaded me to where the next hiding space would be and finally lead me up to the big surprise which was a ruby and diamond promise ring.
It was the best scavenger hunt I ever had and the sweetest thing anyone had ever done. I will never forget it. While I could certainly not outdo that, I did want to do something fun and special.
Just because you get older does not mean you ever have to stop being a kid....young at heart!
Later after Harley had gone to work, the dogs and I went for our run'walk. I was focusing so much on my balance and running that I did not notice anything in the pond the trail. (when I run I cannot look at the scenery without losing balance or make out still images such as wildlife) The dogs tugged at the leash and I thought they wanted to sniff out something or relieve themselves. I turned to see what was going on (if there was a biker behind me; the dogs tug at the leash when there is a person behind me as I cannot hear). There was not anyone behind me so I tried to get them back on track but they tugged again.
This time I stopped and saw them looking out at the pond. They saw the Great Blue Herring that I am always looking for. I have not seen it in this spot for over a month! If it were not for my dogs, I would have totally missed it! I could not believe it! It was as if they knew it was something I wanted to see and they did not want me to keep going oblivious to the giant wonder standing there.
With the sweet scents of the cherry trees and the buds of spring, our trail experience was a great close to the day!
I hope you all had a nice holiday weekend. Harley was working but I did manage to have a nice weekend. When I walked the dogs at the park on Saturday it started pouring. However, when I drove down Ames Lake to the main highway (or is it a road?), the sun came bursting out and I was treated to a nice rainbow.
On Easter I did not color any eggs but I had a beautiful assortment of fake eggs that I hid around the house with little messages inside. Each message was a clue to where the next one would be hidden (leading up to Harley's basket of fudge eggs and a chocolate bunny that I bought at Saykllys candy store in Escanaba, MI) and most dealt with some aspect of our travels, wedding, and relationship together. Harley was so surprised! He was like a big kid! LOL It was so much fun to think of good hiding places and remember things about our journey together. We have been together for 11 years and this was the 5th Easter since we were married.
I must confess that my idea was not original. Back on Valentine's day of 1997, Harley made a scavenger hunt for me. He had written in calligraphy on lace paper hearts little poems and clues about our good times together. Each clue leaded me to where the next hiding space would be and finally lead me up to the big surprise which was a ruby and diamond promise ring.
It was the best scavenger hunt I ever had and the sweetest thing anyone had ever done. I will never forget it. While I could certainly not outdo that, I did want to do something fun and special.
Just because you get older does not mean you ever have to stop being a kid....young at heart!
Later after Harley had gone to work, the dogs and I went for our run'walk. I was focusing so much on my balance and running that I did not notice anything in the pond the trail. (when I run I cannot look at the scenery without losing balance or make out still images such as wildlife) The dogs tugged at the leash and I thought they wanted to sniff out something or relieve themselves. I turned to see what was going on (if there was a biker behind me; the dogs tug at the leash when there is a person behind me as I cannot hear). There was not anyone behind me so I tried to get them back on track but they tugged again.
This time I stopped and saw them looking out at the pond. They saw the Great Blue Herring that I am always looking for. I have not seen it in this spot for over a month! If it were not for my dogs, I would have totally missed it! I could not believe it! It was as if they knew it was something I wanted to see and they did not want me to keep going oblivious to the giant wonder standing there.
With the sweet scents of the cherry trees and the buds of spring, our trail experience was a great close to the day!
Wednesday, April 12, 2006
Spring Break Vacation - A Return to Michigan
Over my spring break from ASL classes, my father and I decided to take a trip back to the Midwest to visit my grandparents and see our relatives, old friends, and neighbors. My finals finished on March 20th and we left March 23rd and returned April 2nd.
The trip was very surreal. I had not been there since my 10 year class reunion in 1999. Back then I was still hearing and it was when I returned from the Midwest that my MRI revealed I had brain tumors which was diagnosed as NF2. So not only was I returning as an adult, but I was also returning as a deaf person. In some ways it felt like the old person who I was died and I was returning as a different or reborn person. I have often felt like my body carries a symbiant (referring to lieutenant Dax off of Star Trek Deep Space Nine). A symbiant was an 0rganism passed on fron person to person when they died. Even though the symbiant was in a new body and person, it carried with it all the memories, knowledge and experience from it's previous hosts. Like the symbiant, I carry all the memories of the hearing person I was and thus people remember me as the hearing person I was before.
It was odd to see all these old places I used to go and have memories from when I was hearing. For example, on the mudlakes at my grandfather's I reminsced back to the voices of laughter as we skated on the ponds, the sounds of skates burrowing into the ice, the crunch of snow under our feet, the roar of snowmobiles, the flutter of a partridge, the hum of a four wheeler, the lap of the waves against the shore of the lake, and my grandfather's voice.
At the church where I grew up, I was disappointed to find it all boarded up and condemned. Looking at the grounds and the outside the the building brought back many memories. I could see and hear the country music festival and picnic, the screams and laughter when we sprayed each other with the hose at our car wash fundraisers, and the chatter of folk outside the church. Peering in through the doorways, I heard the hymns that our good friend and neighbor Cathy led as the morning sunshine poured through the beautiful stained glass windows. Now I could see the church was all dark as the stained glass was gone and replaced with wooden boards. The pews were strown about and some of them overturned. Near the door was a rope leading to the the bell in the tower above. I pictured the altar boys pulling eagerly on the rope to sound the bell as mass was soon to begin and father Dan in his white robe and green sash with a gentle smile to greet all the parishiners. Now the foyer was empty, the rope was still, and the altar beyond was dim.
I ran to look into the basement windows. The afternoon sunlight still warmed the cream colored walls and a myriad of ghosts of memories past appeared. I envisioned myself back when I was a teen with my friends at our youth group events. I could see the cheerful grin of our leader Ken and everyone dancing around. I could hear the music of the time that we played at our lockins and youth group dances. I also saw long tables of a community bonded together and their chatter while they waited for a hearty meal at our pancake breakfast fundraisers. In the kitchen I could see several neighbors/community members rustling about over the sink and stove at our spagetti dinners. I could hear the bang of pots, the spash of water in the big sink, and the hustle of foot steps while the church woman chatted away (and men and kids too).
It was a very foreign experiene. In many of these memories I felt as though I was a giant on the outside of a bubble of life and looking in (like a scientist peering in on the zeal of pond life through a microscope).
It was a very good visit but strange to have all these memories that were forgotten until I visited the places of my past.
We took a train to Milwaukee so our first and last stops originated in that city where I was born. Upon arrival and picking up our car, we drove past the two houses I grew up in (from birth to 7 years old). The first house looked exactly the same except it was more tattered now. It was almost like looking at the photo of me when I was a baby with my young parents.
We then drove by the house were we lived when I was ages 3 through 7. It was still white but they painted the shutters and trim black and changed the vegetation around the house. I remembered walking to school which was nearby so I wanted to drive by that too. Ironically my old elementary school is no longer a public school for hearing students. To our disbelief of the irony, it is now an Amercian Sign Language school! Wow!
Some things are still the same and still there (such as the junior high my parents and I went to and the high school). The lake (water in Lake Michigan) has receded an incredible amount and there have been many business changes within the town.
We enjoyed seeing our family and friends. Thank you to everyone who took the time to write to me and use whatever sign you know for our communication. I greatly appreciate it and cherished your company during my brief visit!
Oh yeah, before we left we went to the Milwaukee museum which was always one of my favorites places of exploration as a kid. It was fun to see it again and I recall the exhibits that I liked the most. They had not changed and it was interesting to see them now years later. My all time favorite was the living sea exhibit with a great white shark. When I looked through the window into the exhibit of the underwater world I remembered how much I desired to jump in there and be a part of it when I was a kid. Seeing it now, I had an interesting realization of how I pursued my dreams to make them come true. It was funny to look in the window and think "yeah I have been there and done that". I have not dove with a great white shark yet but have dove with sharks and the many other creatures I saw in the exhibit.
After a long train ride I returned to the glorious signs of spring here. Below is an email I wrote about my return on April 2nd to my grandmother:
Hey we made it back! We had a nice trip out there.
I am awake right now because I fell asleep earlier and just woke up. I did not get much sleep on the train.
My train arrived Seattle about 10:45 am. A friend who I have met through learning sign language picked me up. On the way back we stopped at one of my places of mental refuge.....the volunteer park conservatory in Seattle.
The outside of the conservatory was lined with white daffodils, pastel purplish pink hyacinths, and various shades of purple pansies. The sweet scent of the hyacinths at the entrance was hypnotic! It is one of my favorite flowering scents! I also like jasmine, gardenia, and freesia.
Inside we found many flowers in bloom. The first room houses lovely and sweetly scented orchids from all over the world with many tall tropical plants such as Bird of Paradise. Continuing on to the temperate room (my favorite) on the right, bright yellow daffodils, purple and pink shades of Cineria as well as Lace Cap and pom forms of hydrangea, various species of delicate lilies, maiden hair fern, and a few later flowering camelia trees are in bloom. Through the next door in the cactus room, several species were in the flowering stage in hues of pink, orange, yellow, red, and white.
We looped back through the three rooms to the final two rooms on the left (the cycad room and the bromelaid room). In the cycad room they had various species of begonia in bloom as well as other flowering plants. The tradtional begonias blooming were pink and a coral orange. Within the two rooms were the most beautiful flowering lily cactuses I have ever seen. The flowers were perfect. Also, many bromelaids were just starting to flower.
The day was beautiful, sunny, and warm (60s). Upon arriving home Harley was excited to see me and awoke when he heard the dogs bark. I made french toast for my friend, Harley and I so we could sample the real maple syrup my former neighbor in "Riverland" had made. We also munched on some cheese curds that I brought back.
After all the excitement and a hot shower, I napped with Harley before he had to go to work.
In the evening (after taking a nap and eating half of my chicken pasty), it was time to take the dogs for a walk. About 6:30 pm we strolled along our "magic trail" in Carnation. I wore my old tattered NMU sweatshirt and a pair of jeans. Today we only saw a few birds and some mallard ducks but the scents of spring were marvelous! The sweet aroma of cherry trees and new budding trees permeated the air. In addition, the smell of earth and water was strong near the ponds beckoning the new life bursting forth.
The mountains still have snow at their peaks around the 3000 feet and above. Yet, down at sea level everything is lush, green, and budding. All the cherry trees are in bloom or just finishing. There are leaflettes on most trees, and everything is brilliant shades of green! My daffodils and hyacinths have started to bloom and in Seattle where it is warmer all the early spring flowers have arrived. Later in the month the tulips will bloom.
Again, thank you for the wonderful time. It was a lovely visit!
Love always, Becky
The trip was very surreal. I had not been there since my 10 year class reunion in 1999. Back then I was still hearing and it was when I returned from the Midwest that my MRI revealed I had brain tumors which was diagnosed as NF2. So not only was I returning as an adult, but I was also returning as a deaf person. In some ways it felt like the old person who I was died and I was returning as a different or reborn person. I have often felt like my body carries a symbiant (referring to lieutenant Dax off of Star Trek Deep Space Nine). A symbiant was an 0rganism passed on fron person to person when they died. Even though the symbiant was in a new body and person, it carried with it all the memories, knowledge and experience from it's previous hosts. Like the symbiant, I carry all the memories of the hearing person I was and thus people remember me as the hearing person I was before.
It was odd to see all these old places I used to go and have memories from when I was hearing. For example, on the mudlakes at my grandfather's I reminsced back to the voices of laughter as we skated on the ponds, the sounds of skates burrowing into the ice, the crunch of snow under our feet, the roar of snowmobiles, the flutter of a partridge, the hum of a four wheeler, the lap of the waves against the shore of the lake, and my grandfather's voice.
At the church where I grew up, I was disappointed to find it all boarded up and condemned. Looking at the grounds and the outside the the building brought back many memories. I could see and hear the country music festival and picnic, the screams and laughter when we sprayed each other with the hose at our car wash fundraisers, and the chatter of folk outside the church. Peering in through the doorways, I heard the hymns that our good friend and neighbor Cathy led as the morning sunshine poured through the beautiful stained glass windows. Now I could see the church was all dark as the stained glass was gone and replaced with wooden boards. The pews were strown about and some of them overturned. Near the door was a rope leading to the the bell in the tower above. I pictured the altar boys pulling eagerly on the rope to sound the bell as mass was soon to begin and father Dan in his white robe and green sash with a gentle smile to greet all the parishiners. Now the foyer was empty, the rope was still, and the altar beyond was dim.
I ran to look into the basement windows. The afternoon sunlight still warmed the cream colored walls and a myriad of ghosts of memories past appeared. I envisioned myself back when I was a teen with my friends at our youth group events. I could see the cheerful grin of our leader Ken and everyone dancing around. I could hear the music of the time that we played at our lockins and youth group dances. I also saw long tables of a community bonded together and their chatter while they waited for a hearty meal at our pancake breakfast fundraisers. In the kitchen I could see several neighbors/community members rustling about over the sink and stove at our spagetti dinners. I could hear the bang of pots, the spash of water in the big sink, and the hustle of foot steps while the church woman chatted away (and men and kids too).
It was a very foreign experiene. In many of these memories I felt as though I was a giant on the outside of a bubble of life and looking in (like a scientist peering in on the zeal of pond life through a microscope).
It was a very good visit but strange to have all these memories that were forgotten until I visited the places of my past.
We took a train to Milwaukee so our first and last stops originated in that city where I was born. Upon arrival and picking up our car, we drove past the two houses I grew up in (from birth to 7 years old). The first house looked exactly the same except it was more tattered now. It was almost like looking at the photo of me when I was a baby with my young parents.
We then drove by the house were we lived when I was ages 3 through 7. It was still white but they painted the shutters and trim black and changed the vegetation around the house. I remembered walking to school which was nearby so I wanted to drive by that too. Ironically my old elementary school is no longer a public school for hearing students. To our disbelief of the irony, it is now an Amercian Sign Language school! Wow!
Some things are still the same and still there (such as the junior high my parents and I went to and the high school). The lake (water in Lake Michigan) has receded an incredible amount and there have been many business changes within the town.
We enjoyed seeing our family and friends. Thank you to everyone who took the time to write to me and use whatever sign you know for our communication. I greatly appreciate it and cherished your company during my brief visit!
Oh yeah, before we left we went to the Milwaukee museum which was always one of my favorites places of exploration as a kid. It was fun to see it again and I recall the exhibits that I liked the most. They had not changed and it was interesting to see them now years later. My all time favorite was the living sea exhibit with a great white shark. When I looked through the window into the exhibit of the underwater world I remembered how much I desired to jump in there and be a part of it when I was a kid. Seeing it now, I had an interesting realization of how I pursued my dreams to make them come true. It was funny to look in the window and think "yeah I have been there and done that". I have not dove with a great white shark yet but have dove with sharks and the many other creatures I saw in the exhibit.
After a long train ride I returned to the glorious signs of spring here. Below is an email I wrote about my return on April 2nd to my grandmother:
Hey we made it back! We had a nice trip out there.
I am awake right now because I fell asleep earlier and just woke up. I did not get much sleep on the train.
My train arrived Seattle about 10:45 am. A friend who I have met through learning sign language picked me up. On the way back we stopped at one of my places of mental refuge.....the volunteer park conservatory in Seattle.
The outside of the conservatory was lined with white daffodils, pastel purplish pink hyacinths, and various shades of purple pansies. The sweet scent of the hyacinths at the entrance was hypnotic! It is one of my favorite flowering scents! I also like jasmine, gardenia, and freesia.
Inside we found many flowers in bloom. The first room houses lovely and sweetly scented orchids from all over the world with many tall tropical plants such as Bird of Paradise. Continuing on to the temperate room (my favorite) on the right, bright yellow daffodils, purple and pink shades of Cineria as well as Lace Cap and pom forms of hydrangea, various species of delicate lilies, maiden hair fern, and a few later flowering camelia trees are in bloom. Through the next door in the cactus room, several species were in the flowering stage in hues of pink, orange, yellow, red, and white.
We looped back through the three rooms to the final two rooms on the left (the cycad room and the bromelaid room). In the cycad room they had various species of begonia in bloom as well as other flowering plants. The tradtional begonias blooming were pink and a coral orange. Within the two rooms were the most beautiful flowering lily cactuses I have ever seen. The flowers were perfect. Also, many bromelaids were just starting to flower.
The day was beautiful, sunny, and warm (60s). Upon arriving home Harley was excited to see me and awoke when he heard the dogs bark. I made french toast for my friend, Harley and I so we could sample the real maple syrup my former neighbor in "Riverland" had made. We also munched on some cheese curds that I brought back.
After all the excitement and a hot shower, I napped with Harley before he had to go to work.
In the evening (after taking a nap and eating half of my chicken pasty), it was time to take the dogs for a walk. About 6:30 pm we strolled along our "magic trail" in Carnation. I wore my old tattered NMU sweatshirt and a pair of jeans. Today we only saw a few birds and some mallard ducks but the scents of spring were marvelous! The sweet aroma of cherry trees and new budding trees permeated the air. In addition, the smell of earth and water was strong near the ponds beckoning the new life bursting forth.
The mountains still have snow at their peaks around the 3000 feet and above. Yet, down at sea level everything is lush, green, and budding. All the cherry trees are in bloom or just finishing. There are leaflettes on most trees, and everything is brilliant shades of green! My daffodils and hyacinths have started to bloom and in Seattle where it is warmer all the early spring flowers have arrived. Later in the month the tulips will bloom.
Again, thank you for the wonderful time. It was a lovely visit!
Love always, Becky
MRI Day - April 10th, 2006
Monday it was time to go back in for another scan of the brain. Unlike some of the other MRIs I have had over the past 2 years, I really was not anxious or worrisome. Even though I take naps quite often during my scans, this MRI was quite comfortable. It was probably the best MRI experience I have had.
First I got there early and I did not even have to wait at all. Just as I opened my book and started to read, a woman came to tell me it was timed to get changed. After I changed I had just sat down to puruse a magazine and the radiology tech came to take me to the MRI machine! We started to venture down the wrong way and I inquired where he was taking me (I had my paperpad with so he could write). Due to the almost complete remodel the MRI machine is located in a new section.
When I entered the room, I was surprised to find a new sleek machine! The head rest was more form fitting with a comfy little cushion pad for my knoggin. Then when he put the other part of the head contraption on (sort of like a cage or helmet), I noticed it had a really cool mirror. With the new mirror I could totally see the window and the technicians running behind it and also my body! Before I could not see them until I was pulled out of the tube. There also seemed to be more ambient light in the entire room and space.
When I arrived I made sure to inform the front desk people about my tricky veins and the proper procedure to follow to insert the IV (use a very small butterfly needle, only the veins in the hand work, and to apply a hot compress to the hands to get the veins to come out). Last time I was poked 6 or 7 times before an IV was run! This time however, it only took one poke and I did not feel it much at all!
During the MRI I felt very relaxed and at peace. I did not quite fall asleep but I was in a very meditative state. Throughout the MRI I kept thinking positive thoughts that the treated tumor was now dead and done with. I also tried to focus on the other tumors and think of them not growing further and all these fantastic positive things I wanted to accomplish.
Before I knew it, I was pulled out into the brightness of the world as if being born. The light of the world was so strong that I could barely open my eyes at first!
Normally I get a packet of films to take with me to the doctors. With the new machine however, they are able to take more accurate scans. The technician told me that there were hundreds of scans and that they would put them on a CD. I still pleaded for a few film images so that I could review them with my radiologist next week. She usually does a measurement check with me present so that we can compare with the last films to double check if there was any new growth.
After my MRI, I picked up my friend from SCCC and we went to my favorite Teriyaki restaurant on Capital Hill. As usual, I ordered the Teriyaki Chicken breast with the cucumber salad. LOL It has sort of been tradition now since I was diagnosed in 1999. The old place (HMO) were I had my MRI scans taken is right across from the Teriyaki Madness. That is how I came to find it. I only ate there after my scans and it is one of two Teriyaki restaurtants that I eat at in Seattle (those who know me well, know that I am picky about my teriyaki).
Following lunch, we visited my one of my sanctuaries and other traditions on MRI day. Most often, (unless I visit the doctor in North Seattle immediately after the MRI) I go to the Volunteer Park Conservatory to reflect, pray, ponder life, and enjoy the beauitful nature that God has created. In the greenhouse, the flowers and plants are so perfectly designed in symmetry and delicateness. The creations are too perfect to be random happenings. Rather than a church, it is there were I feel the closeness of God and appreciate his intricate patterns of life.
I enjoy bringing friends there to share this amazing paradise!
Diana and I also climbed the old water tower which is circular and affords views of Seattle, the Space Needle, the mountains, the sound, Lake Washington, Bellevue and Kirkland, and Mount Rainier on a clear day as well as some popular cathedrals. The top of the tower is so unique and reminds me of a carosel in shape. The tower is brick the top is lined with windows 360 degrees.
Spring is definately here which is my favorite season because it is bursting with the sights and smells of new life. We walked near the water reservoir across from the asian museum where we discovered a round pond. Upon closer inspection we spotted 6 Koi and a male and female mallard resting on the side. Along the path I spotted many aromatic shrubs and flowers that I pointed out to Diana. The scents were absolutely hypnotic and if it was not for the constraint of time, I would stay and become lost in them.
It was a good day for an MRI. I felt energetic and full of life!
First I got there early and I did not even have to wait at all. Just as I opened my book and started to read, a woman came to tell me it was timed to get changed. After I changed I had just sat down to puruse a magazine and the radiology tech came to take me to the MRI machine! We started to venture down the wrong way and I inquired where he was taking me (I had my paperpad with so he could write). Due to the almost complete remodel the MRI machine is located in a new section.
When I entered the room, I was surprised to find a new sleek machine! The head rest was more form fitting with a comfy little cushion pad for my knoggin. Then when he put the other part of the head contraption on (sort of like a cage or helmet), I noticed it had a really cool mirror. With the new mirror I could totally see the window and the technicians running behind it and also my body! Before I could not see them until I was pulled out of the tube. There also seemed to be more ambient light in the entire room and space.
When I arrived I made sure to inform the front desk people about my tricky veins and the proper procedure to follow to insert the IV (use a very small butterfly needle, only the veins in the hand work, and to apply a hot compress to the hands to get the veins to come out). Last time I was poked 6 or 7 times before an IV was run! This time however, it only took one poke and I did not feel it much at all!
During the MRI I felt very relaxed and at peace. I did not quite fall asleep but I was in a very meditative state. Throughout the MRI I kept thinking positive thoughts that the treated tumor was now dead and done with. I also tried to focus on the other tumors and think of them not growing further and all these fantastic positive things I wanted to accomplish.
Before I knew it, I was pulled out into the brightness of the world as if being born. The light of the world was so strong that I could barely open my eyes at first!
Normally I get a packet of films to take with me to the doctors. With the new machine however, they are able to take more accurate scans. The technician told me that there were hundreds of scans and that they would put them on a CD. I still pleaded for a few film images so that I could review them with my radiologist next week. She usually does a measurement check with me present so that we can compare with the last films to double check if there was any new growth.
After my MRI, I picked up my friend from SCCC and we went to my favorite Teriyaki restaurant on Capital Hill. As usual, I ordered the Teriyaki Chicken breast with the cucumber salad. LOL It has sort of been tradition now since I was diagnosed in 1999. The old place (HMO) were I had my MRI scans taken is right across from the Teriyaki Madness. That is how I came to find it. I only ate there after my scans and it is one of two Teriyaki restaurtants that I eat at in Seattle (those who know me well, know that I am picky about my teriyaki).
Following lunch, we visited my one of my sanctuaries and other traditions on MRI day. Most often, (unless I visit the doctor in North Seattle immediately after the MRI) I go to the Volunteer Park Conservatory to reflect, pray, ponder life, and enjoy the beauitful nature that God has created. In the greenhouse, the flowers and plants are so perfectly designed in symmetry and delicateness. The creations are too perfect to be random happenings. Rather than a church, it is there were I feel the closeness of God and appreciate his intricate patterns of life.
I enjoy bringing friends there to share this amazing paradise!
Diana and I also climbed the old water tower which is circular and affords views of Seattle, the Space Needle, the mountains, the sound, Lake Washington, Bellevue and Kirkland, and Mount Rainier on a clear day as well as some popular cathedrals. The top of the tower is so unique and reminds me of a carosel in shape. The tower is brick the top is lined with windows 360 degrees.
Spring is definately here which is my favorite season because it is bursting with the sights and smells of new life. We walked near the water reservoir across from the asian museum where we discovered a round pond. Upon closer inspection we spotted 6 Koi and a male and female mallard resting on the side. Along the path I spotted many aromatic shrubs and flowers that I pointed out to Diana. The scents were absolutely hypnotic and if it was not for the constraint of time, I would stay and become lost in them.
It was a good day for an MRI. I felt energetic and full of life!
13 years and still kicking!
I realized last night while reading a calendar of events in my latest US News magazine that I have been alive for 13 more years! My last chemotherapy treatment was on April 9th of 1993 which landed on a Good Friday (pun intended) of that year.
Between the date, the holiday, and my followup radiation treatments for cancer which ended in mid May of 1993, it is hard to decide which date to celebrate my remission. For me it has always been April 9th or Good Friday which represents a day of rebirth (rising from the dead).
I had really forgotten about it this year but looking back we had a really nice time last Sunday on April 9th. We went down to our old house and I visited with our lovely friend and former neighbor Irene. Afterward, we went to Seahurst Park on Puget Sound to walk the dogs. Low and behold and to our utlimate surprise, we ran into our friends Pat and Angela. Pat is one of the first friends that Harley made out here when we moved to Washington. Recently Pat just moved back to the area from Spokane so it was a total fluke that we happened to be at the same park at the same time (especially seeing as we live an hour or more from the park!)
The weather was fantastic and we saw a beautiful sunset. After the walk we dined with our friends at our favorite Thai restaurant in South Center.
Even though the significance of the date left my mind at the time, it was a great way to celebrate the anniversary of another 13 years of life! It is good to be alive.
One of my favorite quotes as of recently reads: "Fear not that life should come to an end, but that it should never have a beginning."
I can honestly say that I am very proud of the things I have overcome and feel satisfied by the things that I have done. I do feel that I have lived a pretty full life and I plan to continue to do so! Perhaps I would not be who I am or experiened life the same way if it had not been for my battle and survival with cancer.
Between the date, the holiday, and my followup radiation treatments for cancer which ended in mid May of 1993, it is hard to decide which date to celebrate my remission. For me it has always been April 9th or Good Friday which represents a day of rebirth (rising from the dead).
I had really forgotten about it this year but looking back we had a really nice time last Sunday on April 9th. We went down to our old house and I visited with our lovely friend and former neighbor Irene. Afterward, we went to Seahurst Park on Puget Sound to walk the dogs. Low and behold and to our utlimate surprise, we ran into our friends Pat and Angela. Pat is one of the first friends that Harley made out here when we moved to Washington. Recently Pat just moved back to the area from Spokane so it was a total fluke that we happened to be at the same park at the same time (especially seeing as we live an hour or more from the park!)
The weather was fantastic and we saw a beautiful sunset. After the walk we dined with our friends at our favorite Thai restaurant in South Center.
Even though the significance of the date left my mind at the time, it was a great way to celebrate the anniversary of another 13 years of life! It is good to be alive.
One of my favorite quotes as of recently reads: "Fear not that life should come to an end, but that it should never have a beginning."
I can honestly say that I am very proud of the things I have overcome and feel satisfied by the things that I have done. I do feel that I have lived a pretty full life and I plan to continue to do so! Perhaps I would not be who I am or experiened life the same way if it had not been for my battle and survival with cancer.
Wednesday, April 05, 2006
The Magic Trail
Today was another glorious and beautiful day. As such, I had to take the opportunity to visit the "magic trail". Today the dogs and I ran the whole length of our regular walking route on the trail. I don't know the exact distance but we were gone for almost an hour. When I walk the same distance it takes us maybe an hour and a half.
Monday we also went for a run but for the first time in a long while (I am not even sure if I ran that far since after treatment), we ran to the place where I sprained my ankle after returning from Stanford in July 2004.
I recall walking the distance with great ease prior to the radiosurgery treatment. In fact, I had even ran there on occassion and drug my poor friend for a walking journey there when she was carrying her 1 year old daughter the entire way. It did not seem too long for me at the time but now I realize she must have had incredible stamina as carrying a 15-20 pound child strapped to her chest in the heat must have been back braking work not to mention highly astute balance!
It felt good to run. I can run without a walking stick now as I am able to walk fairly well after completing the run. If you recall a year prior when I wrote about running, after running for 15 to 20 minutes I could barely walk because I was so disoriented! I stumbled all over the trail for a good 10 minutes and experienced double vision!
Thankfully that does not happen to me now but I do still have some extrene eye jiggling (Oscillopsia). I have learned to keep my focus forward and to look down at the trail about 3 to 5 feet in front of me the whole time. When I look up and straight ahead, the trail bounces around too much and I cannot make out faces or distances well.
Still it really feels nice to get to this point and I am almost addicted to challenging myself on being able to run the whole distance or as far as I can go. I can't rollerblade, ice skate, or cross country ski anymore but I can run and I am proud to have that much. God has given me my legs and I mind as well use them.
You are probably wondering why I call the trail the "magic trail". I came up with that name last fall when I returned from Arizona. I went for a walk and it was getting dark out. Despite the approaching darkness, I was still able to walk and it was exhilerating to feel the fall breeze wisk through my hair and feel the coolness on my face. All around me the dried leaves from the trees bustled in the wind and came to rest on the ground beside me. If I had not known better, I would swear that I could hear the wind. At the same time I gazed upon the stars beginning to appear, the moonlight in its glory, and the black silhouttees of the trees against the faint trace of the sun which was nearly gone. It was a very spiritual moment as I stood in comtemplation of my life. I felt like dancing for joy that I was still alive and able to savor that moment.
I have had many magical moments like that on the trail. I have seen brilliant sunsets, rainbows, the silver glinting of rain hitting the pond in the afternoon sun, majestic snow covered mountains, the full cycle of the seasons, and life bursting before my eyes over the past 2 years.
When I became deaf, when I was on the trail I had forgotten about my deafness. It seemed routine to my brain to hear sounds such as birds chirping and the ripple of the current in the creek. If I could see it I could hear it. It took several months to realize that I really was not hearing the cars that I would see pass by at the great field or the old pond.
Having NF2 has afforded me the luxury to experience the magic trail to its full capacity. The wildlife I have seen at rare opportunities include: coyotes, deer, a beaver, a bobcat, mallard ducks, wood ducks, blue herring, frogs, Baltimore Orioles, an owl, and many other birds. In addition, each season has its own distinguishing botanical scenery. It has been a delight to see this trail evolve and change. I do a great deal of thinking on the trail and it has given me a place of refuge and solace.
Monday we also went for a run but for the first time in a long while (I am not even sure if I ran that far since after treatment), we ran to the place where I sprained my ankle after returning from Stanford in July 2004.
I recall walking the distance with great ease prior to the radiosurgery treatment. In fact, I had even ran there on occassion and drug my poor friend for a walking journey there when she was carrying her 1 year old daughter the entire way. It did not seem too long for me at the time but now I realize she must have had incredible stamina as carrying a 15-20 pound child strapped to her chest in the heat must have been back braking work not to mention highly astute balance!
It felt good to run. I can run without a walking stick now as I am able to walk fairly well after completing the run. If you recall a year prior when I wrote about running, after running for 15 to 20 minutes I could barely walk because I was so disoriented! I stumbled all over the trail for a good 10 minutes and experienced double vision!
Thankfully that does not happen to me now but I do still have some extrene eye jiggling (Oscillopsia). I have learned to keep my focus forward and to look down at the trail about 3 to 5 feet in front of me the whole time. When I look up and straight ahead, the trail bounces around too much and I cannot make out faces or distances well.
Still it really feels nice to get to this point and I am almost addicted to challenging myself on being able to run the whole distance or as far as I can go. I can't rollerblade, ice skate, or cross country ski anymore but I can run and I am proud to have that much. God has given me my legs and I mind as well use them.
You are probably wondering why I call the trail the "magic trail". I came up with that name last fall when I returned from Arizona. I went for a walk and it was getting dark out. Despite the approaching darkness, I was still able to walk and it was exhilerating to feel the fall breeze wisk through my hair and feel the coolness on my face. All around me the dried leaves from the trees bustled in the wind and came to rest on the ground beside me. If I had not known better, I would swear that I could hear the wind. At the same time I gazed upon the stars beginning to appear, the moonlight in its glory, and the black silhouttees of the trees against the faint trace of the sun which was nearly gone. It was a very spiritual moment as I stood in comtemplation of my life. I felt like dancing for joy that I was still alive and able to savor that moment.
I have had many magical moments like that on the trail. I have seen brilliant sunsets, rainbows, the silver glinting of rain hitting the pond in the afternoon sun, majestic snow covered mountains, the full cycle of the seasons, and life bursting before my eyes over the past 2 years.
When I became deaf, when I was on the trail I had forgotten about my deafness. It seemed routine to my brain to hear sounds such as birds chirping and the ripple of the current in the creek. If I could see it I could hear it. It took several months to realize that I really was not hearing the cars that I would see pass by at the great field or the old pond.
Having NF2 has afforded me the luxury to experience the magic trail to its full capacity. The wildlife I have seen at rare opportunities include: coyotes, deer, a beaver, a bobcat, mallard ducks, wood ducks, blue herring, frogs, Baltimore Orioles, an owl, and many other birds. In addition, each season has its own distinguishing botanical scenery. It has been a delight to see this trail evolve and change. I do a great deal of thinking on the trail and it has given me a place of refuge and solace.
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