Hey! Just to let you know about my absence and lack of posts recently......
I have been out of town or busy trying to get ready to go out of town and keep up with cleaning things in the midst of a major bathroom remodel.
I just got back in from Moses Lake late Monday night (early Tuesday morning???) Had a good trip but being in the water is not what it used to be. I got a headache and I am not sure if it was from being in the sun too long when I am not supposed to be, from glaring into the sun and wind while tubing (no more water skiing as I don't have the balance), or from getting lost under the water with a dang life preserver and wetsuit on! (I got pulled under and disoriented and could not put my head above the surface.....Apparently I was swimming sideways butt up with my head submerged before I finally opened my eyes and found the light. The point is that I took in lots of algae laden water into my sinuses and swallowed some. Yummy! Not.)
Other than that and realizing I probably need to take some private swimming lessons, I had a fantastic visit with my family! My sister and her beau came from Idaho and my brother and sister in law came from Portland to pick me up and drive me to our parents. Because we are going on vacation next week, Harley had to work and was not able to accompany us.
Hopefully I will have a chance later today or tomorrow to write more about it. If not, I will be leaving again on friday and gone for another week. Now that Katie is improving and has been off leash in the yard for almost a month, we can finally take a vacation. Prior, we could not go for more than just a day trip. Therefore, we are heading to Victoria, BC for a couple days and exploring the coast and camping on VanCouver Island for the rest of our 7 day adventure. We are hoping to make it up to Tofino.
Oh yeah! Harley bought a huge spotlight for me as I have great difficulty walking around in the dark and usually have to get up in the middle of the night to use the restroom. (or lack there of while camping. LOL It would not be cool to roll over and fall in some sticks with my pants down in the middle of the night!)
So between now and then if I do not have a chance to blog before we leave, I will see you all again in September. Have a great end of the summer and August!
Wednesday, August 24, 2005
Thursday, August 18, 2005
The Rare Gem
Today was a very rare day because I don't recall feeling any sadness today. Now I have many good days and wonderful friends. There are friends who help me with learning sign language, who take me to parades and events, who take me into the mountains to go on a hike, who go for walks with me, who read my thoughts and offer comfort, praise and encouragement, who share dinners with me, who chat online with me, who share the celebrations of their lives with me, who come and visit and many other things. For this I am quite fortunate. I also have a wonderful family and husband who are supportive and close. I love them dearly and I cannot imagine what my world would be like without them.
However, despite the comfort and joy I feel from my family, friends, and dogs it is rare that a day goes by without some glimmer of sadness for what I have gone through, what I have personally lost, and what the future may hold but cannot be predicted. It is hard living with NF2 physically for many and emotionally I believe for us all. You would not fully know it because I choose often not to write about it or to keep it hidden within if possible.
But today I can honestly say I was rather content. There may have been a moment of passing sadness somewhere. If so, it was short and ran from my memory rather quickly as I don't recall it. As a matter of fact I was just quietly reflecting while cleaning the kitchen and realized that I think I made it a day without anger, sadness, grief, or anguish. The day began overcast and rainy but inside I feel as though the sun was shining in my heart. I absolutely love moments like this. It makes me feel satisfied, like there is positive and important work to be done, and that I have something to hope for.
I wanted to take a short moment to share this feeling with you so that I will not forget it. Perhaps on the days that darkness invades I can come back and visit this place of contentment where the light is shining.
However, despite the comfort and joy I feel from my family, friends, and dogs it is rare that a day goes by without some glimmer of sadness for what I have gone through, what I have personally lost, and what the future may hold but cannot be predicted. It is hard living with NF2 physically for many and emotionally I believe for us all. You would not fully know it because I choose often not to write about it or to keep it hidden within if possible.
But today I can honestly say I was rather content. There may have been a moment of passing sadness somewhere. If so, it was short and ran from my memory rather quickly as I don't recall it. As a matter of fact I was just quietly reflecting while cleaning the kitchen and realized that I think I made it a day without anger, sadness, grief, or anguish. The day began overcast and rainy but inside I feel as though the sun was shining in my heart. I absolutely love moments like this. It makes me feel satisfied, like there is positive and important work to be done, and that I have something to hope for.
I wanted to take a short moment to share this feeling with you so that I will not forget it. Perhaps on the days that darkness invades I can come back and visit this place of contentment where the light is shining.
Tuesday, August 16, 2005
Pudding Fetish
Now it is pudding. I used to only eat tapioca or rice pudding. I despised other flavors or kinds. Yet now I can't get enough of pudding....sugar free and fat free chocolate, white chocolate, vanilla, lemon, and banana.
The chocolate milk tasted good but was making me sick I think. I had a tall glass 3 days in a row and the last day I drank it I got horrible stomach cramps. In addition, I had a bad case of the runs each day. So I was trying to figure out if I had become lactose intolerant. It did not seem to bother me much if I ate things with milk in them, only if I tried to drink the milk. When I had cereal in the past I did not get sick but I did not have too much milk because I have never been a milk drinker. Therefore, I concluded that maybe it was the chocolate syrup I put in the milk. In any case, things seem to be fine if I just make and eat pudding.
By the way, prior to treatment I was a big yogurt eater. I stopped eating yogurt because when I was taking steroids it was too acidic for my mouth. Then while off the steroids it tasted too sweet. Now it just freaks me out because of all the dental problems I have and my fear of exposing my teeth to the high acid content.
Ice cream I don't much care for anymore either (This is from someone who was a HUGE ice cream fan.....my favorite being mackinaw island fudge). It is too cold, bothers my teeth n0w (over the last 3 months) and tastes too sweet. Yet I really like the pudding.
Oh yeah by the way and slightly off topic; I had to break down and buy some bananas and potatoes to start eating again. I was waking up every morning for a couple weeks with charlie horses in my calves (leg cramps). The diamox I have been taking depletes the body of potassium and it is hard to find a variety of food (low in carbs) that has enough potassium content in it.
The whole point of this post is that the body really goes through quite a progression of taste changes after treatment and certain medicines. I am not complaining though. This is probably one of the benefits depending on how you look at it. ;o)
The chocolate milk tasted good but was making me sick I think. I had a tall glass 3 days in a row and the last day I drank it I got horrible stomach cramps. In addition, I had a bad case of the runs each day. So I was trying to figure out if I had become lactose intolerant. It did not seem to bother me much if I ate things with milk in them, only if I tried to drink the milk. When I had cereal in the past I did not get sick but I did not have too much milk because I have never been a milk drinker. Therefore, I concluded that maybe it was the chocolate syrup I put in the milk. In any case, things seem to be fine if I just make and eat pudding.
By the way, prior to treatment I was a big yogurt eater. I stopped eating yogurt because when I was taking steroids it was too acidic for my mouth. Then while off the steroids it tasted too sweet. Now it just freaks me out because of all the dental problems I have and my fear of exposing my teeth to the high acid content.
Ice cream I don't much care for anymore either (This is from someone who was a HUGE ice cream fan.....my favorite being mackinaw island fudge). It is too cold, bothers my teeth n0w (over the last 3 months) and tastes too sweet. Yet I really like the pudding.
Oh yeah by the way and slightly off topic; I had to break down and buy some bananas and potatoes to start eating again. I was waking up every morning for a couple weeks with charlie horses in my calves (leg cramps). The diamox I have been taking depletes the body of potassium and it is hard to find a variety of food (low in carbs) that has enough potassium content in it.
The whole point of this post is that the body really goes through quite a progression of taste changes after treatment and certain medicines. I am not complaining though. This is probably one of the benefits depending on how you look at it. ;o)
Thursday, August 11, 2005
The Oddity of Things
Now if this isn't wild or bizarre I don't know what is.
Out of curiousity I decided to do a yahoo search under "NF2" to see if I came up with anything new that might have been published recently. Basically the first page of results are things I already knew or have already seen. I thought to myself "Surely there must be more results".
As expexted, there were quite a few more pages of entries. On the second yahoo search page I saw a result with my name under it from an author in "Mercer Island, WA". Hey that is just a hop, skip, and a jump from where I live! The site was titled "rebekah - nf2 - 104". The name of course is spelled in Hebrew and that is what the website is about: "artistic renditions of Hebrew letters". I was intrigued to I had to check it out.
On the page was the meaning of my name showing my name "Rebecca" as a variant spelling. Further, I never before really did make the connection of the story of Rebekah in the bible. Sure we studied it in CCD but the focus was really on the story of Christ. I knew this but somehow forgot in my subconscious that Rebekah was the mother of Jacob and Esau. I always did like the name Jacob (no special reason) and I used to sit for this wonderful little boy by that name. In any case, when we adopted our dogs, the man had already named the male puppy "Jacob" and called him "Jake" for short. We liked the name and it seemed to fit him. Mostly I call him "Jake" but on occassion he is called "Jacob" too.
Last it was interesting reading the meaning of the Hebrew letters behind the name. It is long so I will let you click the link (title of the post) if you are interested in seeing more. The first part "Resh" which sounds like "R" means "Beginning" or "Head".
Whoa! How weird eh? I definitely did not expect to find this kind of coincidental connection when innocently looking up "NF2".
Out of curiousity I decided to do a yahoo search under "NF2" to see if I came up with anything new that might have been published recently. Basically the first page of results are things I already knew or have already seen. I thought to myself "Surely there must be more results".
As expexted, there were quite a few more pages of entries. On the second yahoo search page I saw a result with my name under it from an author in "Mercer Island, WA". Hey that is just a hop, skip, and a jump from where I live! The site was titled "rebekah - nf2 - 104". The name of course is spelled in Hebrew and that is what the website is about: "artistic renditions of Hebrew letters". I was intrigued to I had to check it out.
On the page was the meaning of my name showing my name "Rebecca" as a variant spelling. Further, I never before really did make the connection of the story of Rebekah in the bible. Sure we studied it in CCD but the focus was really on the story of Christ. I knew this but somehow forgot in my subconscious that Rebekah was the mother of Jacob and Esau. I always did like the name Jacob (no special reason) and I used to sit for this wonderful little boy by that name. In any case, when we adopted our dogs, the man had already named the male puppy "Jacob" and called him "Jake" for short. We liked the name and it seemed to fit him. Mostly I call him "Jake" but on occassion he is called "Jacob" too.
Last it was interesting reading the meaning of the Hebrew letters behind the name. It is long so I will let you click the link (title of the post) if you are interested in seeing more. The first part "Resh" which sounds like "R" means "Beginning" or "Head".
Whoa! How weird eh? I definitely did not expect to find this kind of coincidental connection when innocently looking up "NF2".
Tuesday, August 09, 2005
The Passion
Have you seen the "Passion of Christ" yet? If not I would highly recommend it. Movies such as "The Pianist", "Hotel Rhwanda", and "The Passion 0f Christ" are real stories. They are stories about humanity, suffering, enduring, and perseverance.
When I see such movies it puts things into perspective. Yes my plight with NF2 is no joy ride but I am extremely lucky. After watching each of these movies I thought to myself how I rather be where I am than be forced to endure what the main characters or people in each of these stories did.
I am surrounded by comfort and none of these people had that in their situation. In fact, each of these characters encountered a point where they were terrorized and felt alone (even Jesus did at one point). I have to admit I have been fearful and scared but I have never felt alone, without comfort, or terrorized.
All the movies can be difficult to watch because it is hard to accept how inhumane these people were treated. You can feel it like knives digging into your skin.
After watching "The Passion of Christ" and being horrified by what Jesus had to go through, I was surprised to stand up from my chair and feel a tear or two drop from my eye. I can't cry (due to loss of tear production) and I did not have a breathing or non-speaking episode. I just casually stood up to shut off the TV and DVD player and a tear rolled down my cheek. I went upstairs and the right side of my cheek was wet (the eye that gets dried out from the facial weakness).
Over the last year I have watched many movies that I have been emotionally overcome by, but never have I been able to develop so much as a tear before this one.
When I see such movies it puts things into perspective. Yes my plight with NF2 is no joy ride but I am extremely lucky. After watching each of these movies I thought to myself how I rather be where I am than be forced to endure what the main characters or people in each of these stories did.
I am surrounded by comfort and none of these people had that in their situation. In fact, each of these characters encountered a point where they were terrorized and felt alone (even Jesus did at one point). I have to admit I have been fearful and scared but I have never felt alone, without comfort, or terrorized.
All the movies can be difficult to watch because it is hard to accept how inhumane these people were treated. You can feel it like knives digging into your skin.
After watching "The Passion of Christ" and being horrified by what Jesus had to go through, I was surprised to stand up from my chair and feel a tear or two drop from my eye. I can't cry (due to loss of tear production) and I did not have a breathing or non-speaking episode. I just casually stood up to shut off the TV and DVD player and a tear rolled down my cheek. I went upstairs and the right side of my cheek was wet (the eye that gets dried out from the facial weakness).
Over the last year I have watched many movies that I have been emotionally overcome by, but never have I been able to develop so much as a tear before this one.
Buzz Buzz Goes the Beauty
Some days are hard. There are days where memories of who I was before my demise plague my waking thoughts. You would not completely understand it unless you have befallen such a trajedy yourself. One where there is not a reverse direction or a point when things end, all is well, and it is back the way it was before.
Of course when one endures trajedy of any sort one is changed. I recall that when I had cancer things were terrible, a lesson was learned, I got better and went on with life. I can think of several situations in which one may physically be restored to their previous state but perhaps emotionally changed as a person.
However, like someone who has become paralyzed, with NF2 life does change whether you want it to or not. Yes of course there is a lesson learned but one must also learn to adapt to this new self which can be a tremendous struggle to overcome. "No longer who I was but not yet who I will be." - Michael Harvey, PhD.
Saturday was such a day for me. I can't recall exactly what triggered it. I have phases of going in and out. No it really is not related to becoming deaf but instead it is all of the other things I am beginning to discover and piece together. Although at the time it may have seemed rather ordinary, I am haunted by some of the marvelous physical challenges I have accomplished. I cannot even fathom how I did something as simple as rollerblading over broken side walk or jumping bumps and curbs. I truly do miss having my balance and previous level of athletisism. My thinking was like Sir Edmund Hillary when asked why he climbed Everest "Because I can." When I see a mountain it pains me greatly that I cannot climb it.
I was caught in a tangle of emotion feeling sorry for myself again. Harley was waking up and I did not want him to notice. Remember that I cannot cry but somehow he is able to read the expression on my face. I stared blankly out the window in my self pity. The day was beautiful! A day where I would have been out doing something such as diving or hiking or just messing around outside. I was pulled into a trance of deep sadness.
You know those optical illusion pictures where you see nothing at first and if you stare long enough the hidden art seems to pop out at you? Well it was like that. At first I just all I could see was the window screen in my attempts to look away. Then I looked beyond and noticed the sun gleaming on all the vegetation and the trees up on the hill standing tall as if in a painting.
All of a sudden I witnessed an amazing sight! LOL No I did not see the image of Christ nestled in the trees but a dragonfly! I had never seen one at the cabin before! For summer this may not be very amazing to some of you but normally dragonflies frequent ponds, riverbanks, wetlands, etc. But our home is not in such a location! The nearest tiny lake is a mile away and it is surrounded by homes. Further, there is a main road (busy in the summer) in route to our house.
I immediately got excited and looked at Harley. When I looked back out the window I saw another one. Wow what a lucky day! I was glued to the scenery out our bedroom window. I thought I was seeing several dragonflies when I began to realize it was the same one the whole time! It kept flying triumphantly back and forth outside my window as if it were saying "Bzzz Bzzz Never Fear For I Am Here!" It was entertaining me with its own personal dance!
The sight was beautiful and I then realized if not in this time and space, I might have never noticed such a gift!
Of course when one endures trajedy of any sort one is changed. I recall that when I had cancer things were terrible, a lesson was learned, I got better and went on with life. I can think of several situations in which one may physically be restored to their previous state but perhaps emotionally changed as a person.
However, like someone who has become paralyzed, with NF2 life does change whether you want it to or not. Yes of course there is a lesson learned but one must also learn to adapt to this new self which can be a tremendous struggle to overcome. "No longer who I was but not yet who I will be." - Michael Harvey, PhD.
Saturday was such a day for me. I can't recall exactly what triggered it. I have phases of going in and out. No it really is not related to becoming deaf but instead it is all of the other things I am beginning to discover and piece together. Although at the time it may have seemed rather ordinary, I am haunted by some of the marvelous physical challenges I have accomplished. I cannot even fathom how I did something as simple as rollerblading over broken side walk or jumping bumps and curbs. I truly do miss having my balance and previous level of athletisism. My thinking was like Sir Edmund Hillary when asked why he climbed Everest "Because I can." When I see a mountain it pains me greatly that I cannot climb it.
I was caught in a tangle of emotion feeling sorry for myself again. Harley was waking up and I did not want him to notice. Remember that I cannot cry but somehow he is able to read the expression on my face. I stared blankly out the window in my self pity. The day was beautiful! A day where I would have been out doing something such as diving or hiking or just messing around outside. I was pulled into a trance of deep sadness.
You know those optical illusion pictures where you see nothing at first and if you stare long enough the hidden art seems to pop out at you? Well it was like that. At first I just all I could see was the window screen in my attempts to look away. Then I looked beyond and noticed the sun gleaming on all the vegetation and the trees up on the hill standing tall as if in a painting.
All of a sudden I witnessed an amazing sight! LOL No I did not see the image of Christ nestled in the trees but a dragonfly! I had never seen one at the cabin before! For summer this may not be very amazing to some of you but normally dragonflies frequent ponds, riverbanks, wetlands, etc. But our home is not in such a location! The nearest tiny lake is a mile away and it is surrounded by homes. Further, there is a main road (busy in the summer) in route to our house.
I immediately got excited and looked at Harley. When I looked back out the window I saw another one. Wow what a lucky day! I was glued to the scenery out our bedroom window. I thought I was seeing several dragonflies when I began to realize it was the same one the whole time! It kept flying triumphantly back and forth outside my window as if it were saying "Bzzz Bzzz Never Fear For I Am Here!" It was entertaining me with its own personal dance!
The sight was beautiful and I then realized if not in this time and space, I might have never noticed such a gift!
Monday, August 08, 2005
So tired.....Tired of waiting for YOOOUUU (imagine the song) - MRI results
Well the news. Let's see, I had a followup MRI of the head on July 25th and one of the spine on July 27th. As far as my spine I have been told it is stable. I have looked at the films and 6 tumors have been pointed out to me. Apparently they were also there in January and have not changed in size. They occupy the lower thoracic and lumbar regions of the spine (lower to midback). To be honest I have not read the written report yet. I was just so ticked about the last appointment that I never opened the envelope containing the report when I left there.
The head....Dang mystery I tell you! Well.......I am assured from one doctor that it is changing from a "cystic" to "solid" phase which I never heard of before now. First the stupid thing was swelling like a hammered thumb and then it started to die from the middle but we could not tell at that point if it would continue to go through necrosis (cell death). There was a 50/50 chance that it was dying or that it was still living on the outside. At that point (I think back in March maybe) I had to take a gamble: either wait another 2-3 months in hopes that it would continue to die or have my head opened up and the "thing" extracted. If I was "opened up" there was a 50/50 chance that the surgeons would just be removing dead tissue rendering the surgery unnecessary or they would remove a tumor that was still living on the outside and growing but dead on the inside. I chose to put my faith in and God and time (I waited).
In May things were looking good. The tumor finally stopped swelling (11 months after treatment) and the tumor was nearly all black (necrosis - dead). Ahh relief! Now I was told that we were waiting for the tumor to hopefully collapse (shrink a little so it would not be pressing on the brainstem so much). When I inquired roughly how long this could take I got the ballpark figure of 6 months to a year. Before I had the treatment I had known that it takes 2 years to know if the procedure was a success but I did not however, know that it would be this difficult. I just thought life would go on the way it had since 1999 when I was diagnosed (meaning I could still do everything I enjoyed, I looked fine, and my vision was fine......in other words, we would just let the tumor do its thing while life went on as usual.) I knew I would probably be deaf but I accepted that.
My most recent MRI however showed growth of the light color (white) area into the previously black but it had not increased in size (I would be in trouble if it had!). I did not know this beforehand because I went straight from the MRI scan to meeting with the doctor. AND some nimrod did not schedule a captioner! Even though this appointment was made months in advance and it is stressed in my file that I need accommodation (I have provided a contact sheet of 5 captioners) some new person was hired that did not know any better (so I am told).
I stressed to the doctor my concern about the tumor not collapsing and what were to happen if one of the other two tumors started to grow. Everyone has been so focused on the problems of the one that we have not addressed the other two (a 2.8 cm meningioma touching the tumor that was swelling from the treatment and a 1.8 cm acoustic neuroma on the left side). Each time I had been assured that those tumors were not growing. But then I was thinking one day, "What if one of them starts to grow? There is not enough space anymore to allow for swelling. My brainstem would be compromised. Thus if that scenario happened, I would need to have surgery to remove it. There would still be swelling but more room for the swelling to happen."
So with this thought in mind, I asked the doctor in this new scenario of "from cystic to solid" phase how long it would be before the tumor collapses. It of course will never dissapate like a malignant tumor but at least it could shrink enough hopefully to allow the other tumors to be treated and for my brainstem to have more room. I was kind of awestruck when this time she told me that it could take 2-4 years if even at all! Then my mind starting churning and I was thinking how since I was diagnosed the acoustic neuroma tumors grew at a consistent rate of 2 mm every 6 months. Then for some unknown reason (stress???) the right side grew 1 cm in 6 months. Something like that could happen to the left side at any time.
It is not a very comforting thought. The past two days I have felt head pressure on the left side and surges. This really freaks me out! I am trying really hard to live low stress, exercise daily, and I have been eating well. It stinks to have something uncontrollable in your noggin.
Well the doctor here seems to think this is a good thing: the tumor changing from "cystic" to "solid". I asked her how she knew that or could tell from the MRI films and she told me "experience". She does have experience .......the best in the area for stereotactic radiation (Gamma Knife and FSR). However, the form of treatment I had (cyberknife radiosurgery) is not available in this state and I have a very rare disorder (extremely rare). I have come to discover that the tumors of people with NF2 are VERY different from other patients (acoustic neuroma....meaning 1 tumor on one side, and other brain tumors).
Therefore, I consulted on a cyberknife board with one of the doctors and he was unfamiliar with the terms to describe post treatment characteristics of the tumor (cystic to solid). I think I should send my films back down to Stanford and consult with the doctors down there and maybe a few other out of state docs familiar with cyberknife.
Here are the statements from the MRI report that are in question:
FINDING:
"The right acoustic neuroma is cystic with a solid lateral component extending into and expanding the right internal auditory canal. On today's study the solid lateral component is larger with extension of the solid component centrally and reduction of the central cyst, but the overall size and volume of the tumor is unchanged."
IMPRESSION:
There has been no change in the degree of bilateral compression of the medulla and pons; the only difference between the two studies is a reduction in the volume of the central cystic component of the right acoustic neuroma with the apparent growth and extension of the solid lateral (intracanalicular) component of the tumor centrally into the cystic cavity."
I invite your comments.
The head....Dang mystery I tell you! Well.......I am assured from one doctor that it is changing from a "cystic" to "solid" phase which I never heard of before now. First the stupid thing was swelling like a hammered thumb and then it started to die from the middle but we could not tell at that point if it would continue to go through necrosis (cell death). There was a 50/50 chance that it was dying or that it was still living on the outside. At that point (I think back in March maybe) I had to take a gamble: either wait another 2-3 months in hopes that it would continue to die or have my head opened up and the "thing" extracted. If I was "opened up" there was a 50/50 chance that the surgeons would just be removing dead tissue rendering the surgery unnecessary or they would remove a tumor that was still living on the outside and growing but dead on the inside. I chose to put my faith in and God and time (I waited).
In May things were looking good. The tumor finally stopped swelling (11 months after treatment) and the tumor was nearly all black (necrosis - dead). Ahh relief! Now I was told that we were waiting for the tumor to hopefully collapse (shrink a little so it would not be pressing on the brainstem so much). When I inquired roughly how long this could take I got the ballpark figure of 6 months to a year. Before I had the treatment I had known that it takes 2 years to know if the procedure was a success but I did not however, know that it would be this difficult. I just thought life would go on the way it had since 1999 when I was diagnosed (meaning I could still do everything I enjoyed, I looked fine, and my vision was fine......in other words, we would just let the tumor do its thing while life went on as usual.) I knew I would probably be deaf but I accepted that.
My most recent MRI however showed growth of the light color (white) area into the previously black but it had not increased in size (I would be in trouble if it had!). I did not know this beforehand because I went straight from the MRI scan to meeting with the doctor. AND some nimrod did not schedule a captioner! Even though this appointment was made months in advance and it is stressed in my file that I need accommodation (I have provided a contact sheet of 5 captioners) some new person was hired that did not know any better (so I am told).
I stressed to the doctor my concern about the tumor not collapsing and what were to happen if one of the other two tumors started to grow. Everyone has been so focused on the problems of the one that we have not addressed the other two (a 2.8 cm meningioma touching the tumor that was swelling from the treatment and a 1.8 cm acoustic neuroma on the left side). Each time I had been assured that those tumors were not growing. But then I was thinking one day, "What if one of them starts to grow? There is not enough space anymore to allow for swelling. My brainstem would be compromised. Thus if that scenario happened, I would need to have surgery to remove it. There would still be swelling but more room for the swelling to happen."
So with this thought in mind, I asked the doctor in this new scenario of "from cystic to solid" phase how long it would be before the tumor collapses. It of course will never dissapate like a malignant tumor but at least it could shrink enough hopefully to allow the other tumors to be treated and for my brainstem to have more room. I was kind of awestruck when this time she told me that it could take 2-4 years if even at all! Then my mind starting churning and I was thinking how since I was diagnosed the acoustic neuroma tumors grew at a consistent rate of 2 mm every 6 months. Then for some unknown reason (stress???) the right side grew 1 cm in 6 months. Something like that could happen to the left side at any time.
It is not a very comforting thought. The past two days I have felt head pressure on the left side and surges. This really freaks me out! I am trying really hard to live low stress, exercise daily, and I have been eating well. It stinks to have something uncontrollable in your noggin.
Well the doctor here seems to think this is a good thing: the tumor changing from "cystic" to "solid". I asked her how she knew that or could tell from the MRI films and she told me "experience". She does have experience .......the best in the area for stereotactic radiation (Gamma Knife and FSR). However, the form of treatment I had (cyberknife radiosurgery) is not available in this state and I have a very rare disorder (extremely rare). I have come to discover that the tumors of people with NF2 are VERY different from other patients (acoustic neuroma....meaning 1 tumor on one side, and other brain tumors).
Therefore, I consulted on a cyberknife board with one of the doctors and he was unfamiliar with the terms to describe post treatment characteristics of the tumor (cystic to solid). I think I should send my films back down to Stanford and consult with the doctors down there and maybe a few other out of state docs familiar with cyberknife.
Here are the statements from the MRI report that are in question:
FINDING:
"The right acoustic neuroma is cystic with a solid lateral component extending into and expanding the right internal auditory canal. On today's study the solid lateral component is larger with extension of the solid component centrally and reduction of the central cyst, but the overall size and volume of the tumor is unchanged."
IMPRESSION:
There has been no change in the degree of bilateral compression of the medulla and pons; the only difference between the two studies is a reduction in the volume of the central cystic component of the right acoustic neuroma with the apparent growth and extension of the solid lateral (intracanalicular) component of the tumor centrally into the cystic cavity."
I invite your comments.
Sunday, August 07, 2005
Wanna see my neat trick?
I have not gone into detail much about it and have been very reluctant to post photos of myself, but I have suffered from facial paralysis post treatment. It probably started earlier and gradually built up to its full potential as I recall back before that shocking horror on the evening of December 14th I had little clues or hints along the way.
I think back in January I had a facial nerve test at the Seattle Ear Clinic that I may have mentioned. At the time my facial nerve was only operating at 52% out of 100%. (100% being the normal looking population). Most people would refer to it as "facial palsy" but that it is not. Facial palsy is caused by a bacterial or viral infection and can often be remedied over time with the use of steroids. A neurosurgeon way back in February corrected us as in my case (as well as others with NF2 or these type of brain tumors) it is considered facial weakness/paralysis and is the result of the tumor, surgery, or radiation damaging the nerve.
Many people think it has improved but that might be because my head (face) is no longer swelled up like a dang pumpkin now that I am off steroids. It has kind of been a pain in the butt. Basically the facial weakness has ruined my photography eye which is the only one I can keep open, causes eye dryness and blurred vision in that eye, has made eating a challenge (I can only chew on the opposite side of my mouth), has caused food to get trapped in the right side of my mouth (between the teeth and gums) which is very difficult to get out without swishing water around my mouth several times while holding the lips shut, I cannot take very big bites and eat with my mouth closed (thus I have to take small bites or hold a napkin in front of my face), and I can no longer drink from glasses or bottles. I always need to use a straw so that I do not dribble on myself. Oh I did not mention what it does to a woman's self esteen either in a very "Cosmopolitan" driven society with age and wrinkles looming just around the corner.
Despite all that, I have managed to amuse myself. First of all, hehe, winking at someone is no problem whereas I just could not really wink before without blinking both eye lids. I can make interesting faces like I am smiling on one side as if thinking "Hmmn." or being sarcastic or a smart alec (spelling??). I can raise my eye brow on the left side repeatedly at someone. Yet the best trick of all I have found is smiling or curling my lip on the right and raising my eye brow on the left in a repetitive motion. I don't know if I can do it without looking in the mirror. I can of course smile on the left but recently with my deflated face I have been able to smile some on the right. This takes concentration as I have to not move my smile on the left side of my face which is really easy (the facial weakness is on the right). LOL Anyhow, this really seems to entertain me when I am observing my face in the mirror and practicing smiling and moving the face.
I think back in January I had a facial nerve test at the Seattle Ear Clinic that I may have mentioned. At the time my facial nerve was only operating at 52% out of 100%. (100% being the normal looking population). Most people would refer to it as "facial palsy" but that it is not. Facial palsy is caused by a bacterial or viral infection and can often be remedied over time with the use of steroids. A neurosurgeon way back in February corrected us as in my case (as well as others with NF2 or these type of brain tumors) it is considered facial weakness/paralysis and is the result of the tumor, surgery, or radiation damaging the nerve.
Many people think it has improved but that might be because my head (face) is no longer swelled up like a dang pumpkin now that I am off steroids. It has kind of been a pain in the butt. Basically the facial weakness has ruined my photography eye which is the only one I can keep open, causes eye dryness and blurred vision in that eye, has made eating a challenge (I can only chew on the opposite side of my mouth), has caused food to get trapped in the right side of my mouth (between the teeth and gums) which is very difficult to get out without swishing water around my mouth several times while holding the lips shut, I cannot take very big bites and eat with my mouth closed (thus I have to take small bites or hold a napkin in front of my face), and I can no longer drink from glasses or bottles. I always need to use a straw so that I do not dribble on myself. Oh I did not mention what it does to a woman's self esteen either in a very "Cosmopolitan" driven society with age and wrinkles looming just around the corner.
Despite all that, I have managed to amuse myself. First of all, hehe, winking at someone is no problem whereas I just could not really wink before without blinking both eye lids. I can make interesting faces like I am smiling on one side as if thinking "Hmmn." or being sarcastic or a smart alec (spelling??). I can raise my eye brow on the left side repeatedly at someone. Yet the best trick of all I have found is smiling or curling my lip on the right and raising my eye brow on the left in a repetitive motion. I don't know if I can do it without looking in the mirror. I can of course smile on the left but recently with my deflated face I have been able to smile some on the right. This takes concentration as I have to not move my smile on the left side of my face which is really easy (the facial weakness is on the right). LOL Anyhow, this really seems to entertain me when I am observing my face in the mirror and practicing smiling and moving the face.
Friday, August 05, 2005
Simple Pleasures
My gosh! I just made myself a glass of chocolate skim milk that was absolutely fantastic! I had to get my calcium in and we have lots of milk here (Harley is not drinking it because it has too many carbs.......He is doing the south beach diet thing that I think would absolutely kill me.)
I made the concoction in one of my favorite glasses that my friend brought me back from Anchorage, Alaska. Basically it is a heavy duty type of beer glass (even though I don't drink beer....hehe). I used to love to drink out of those glasses but alas my facial paralysis had made the task a challenge. I successfully took a sip (slurp) but a drip of milk still leaked out the right side and dripped down the side of the glass. I thought, "Ok it is too hot of a day and I am too thirsty to fool around with this monkey business!" Therefore I whipped out a straw and sucked down the glass in a minute or two!
Words cannot describe the exhilarating feeling! The best way to describe it is as if I had walked the Mojave Desert, was extremely parched and desperately in need of water. Ok maybe that is a little bit of an exageration but I felt like a person who walked the desert and finally relieved his/her thirst with a nice cool bottle of water.
Other joys of the day: I have had in my head the tune from Prince "Take Me With You" for a few days now. I think it all started when I was looking up at the stars and the tune "Arms of Orion" popped into my head. I like those songs but I was thrilled this afternoon when one of my favorite Gaelic songs by Loreena McKennit came blaring through my brain with a triumphant force! "The Old Ways" http://www.lyricslyricsandlyrics.com/l/30876/
Angel I know this will make you pop in the CD as I remember it also being one of your favorites. ;o)
I made the concoction in one of my favorite glasses that my friend brought me back from Anchorage, Alaska. Basically it is a heavy duty type of beer glass (even though I don't drink beer....hehe). I used to love to drink out of those glasses but alas my facial paralysis had made the task a challenge. I successfully took a sip (slurp) but a drip of milk still leaked out the right side and dripped down the side of the glass. I thought, "Ok it is too hot of a day and I am too thirsty to fool around with this monkey business!" Therefore I whipped out a straw and sucked down the glass in a minute or two!
Words cannot describe the exhilarating feeling! The best way to describe it is as if I had walked the Mojave Desert, was extremely parched and desperately in need of water. Ok maybe that is a little bit of an exageration but I felt like a person who walked the desert and finally relieved his/her thirst with a nice cool bottle of water.
Other joys of the day: I have had in my head the tune from Prince "Take Me With You" for a few days now. I think it all started when I was looking up at the stars and the tune "Arms of Orion" popped into my head. I like those songs but I was thrilled this afternoon when one of my favorite Gaelic songs by Loreena McKennit came blaring through my brain with a triumphant force! "The Old Ways" http://www.lyricslyricsandlyrics.com/l/30876/
Angel I know this will make you pop in the CD as I remember it also being one of your favorites. ;o)
Wednesday, August 03, 2005
Madder Than Heck!
Sorry I have been delayed from posting. I am in a swirl of things: two MRIs last week, 2 doctors visits last week (all located far from my home), 1 this week, back to researching more shit about this NF2 crap again, trying to get out and get exercise, and then the regular duties of life come in too.
Yesterday was the goal to see a new doctor who supposedly knows about NF2 and is a neurologist/neurosurgeon. I have had a stiff back and neck and some pain for a month so we wanted to get him to take a look at it before I went to a chiropractor. We wanted to see if the spinal tumors I have (6 in total) were pressing on any major nerves and the source of my stiffness, pain, and balance problems.
Again I arrive early for the appointment and wait in the lobby but do not see my captioner. I am wondering if she is already setup in back or is late. They call me into this office where my films are all setup on these film lights mounted on the wall.
I see no captioner. I am angry! When I inquire where the captioner is the doctor tries to speak to me which made me even more mad. I inform him that I am deaf and I cannot understand him. He then asks me if I read lips. OOOOOHHH THE WRONG THING TO ASK ME RIGHT NOW!!!!!!!!!! I will refrain from using the cuss words of how I really feel about that.
Ya know, if I had just casually met him on the street, he did not know better, and I had no paper, then I could deal with that question and the ignorance behind it. However, this chump is billing my insurance a healthy wad of cash for this ridiculous fiasco and it is costing me a $15 co-pay, who knows how much in gas as it is a long drive there and back, and my time. There is often traffic both ways and an appointment in North Seattle (even just Seattle) totally blows the day!
Anyhow, I was really frustrated and ready to walk out but alas I drove all the way there (spent my time and gas) and traffic going back home was helacious at that time! So we sat down and I tell him how disappointed I am in a very firm and direct tone (indicating I am not happy in a sad kind of way but an angry kind of way).
LOL So what does he do next? I guess he was trying to make some kind of connection with me or assure me that he was experienced with deafness. The next thing he wrote made me even angrier! He tells me that he has a brother-in-law who is deaf. I have no idea if I rolled my eyes but that was sure my internal expression. I am thinking "Oh here we go! Some self righteous hearing person thinks they know all about deafness just because they happen to KNOW or KNOW OF somebody who is deaf." Knowing and interacting/communicating are two different things here folks. Sure my husband KNEW the singer "Jewel" when he was like 5 years old and lived in Homer, Alaska. He went to school with her. Does that make him in expert on her life?????? I think not.
Forgetting that I am paying for this shingding, I get emotionally involved and fed up with the attitude that some hearing people have about deafness or that all types of deafness are the same. NOT! I know he is most likely talking about a person who was deaf from birth or from childhood (which is a world of difference from being late deafened as an adult). I won't even get into all that right now. Therefore, in my pissed demeanor, I ask him if his brother-in-law was late deafened. He tells me that he thinks he was deaf since a child. I emphatically sign and tell him "That's different! That's different!" He goes on to tell me, that his brother-in-law speaks, writes, and he thought he could sign too. Knowing that the doctor obviously did not know a lick of sign (because I did sign some things to him which he seemed oblivious too) and did not know Jack Shit about deafness, I politely told him that his brother-in-law was probably raised with total communication. ANYWAY......the appointment shall we?
Well I have to admit it was really frustrating under the circumstances. To make things worse, the doctor was not very good at getting his thoughts to paper efficiently. His first statement "You have NF2". There was no question mark or period so I was not sure if he was making a statement, asking a question, confirming or what! I was thinking inside "Yeah no shit sherlock....I have known this for 6 years now and you should have known this if you did your job and read my file before the appointment!" How am I supposed to react to that? I must have had a look of disgust on my face. I really do not know.
Then he wrote something I could not even read or understand. Even reading it now I don't know but I just figured it out from memory as he pointed and moved his leg around. It says "Your leg (which looks like it is written as lej or by) is problems". I was thinking "What?????" which I must have said outloud. LOL Often times he started to write and did not finish or scratched it out. I am looking at the paper now and it says "This". This what???? Then he finally wrote out "What is your major problem". By then I burst out sarcastically "I have NF2. That is a major problem. LOL There are lots of things wrong with me!"
The rest of the dialogue will probably bore you or frustrate you. It is hard to follow and the notes are all over the place which is a chore to make sense of later. Thankfully the second half went a little better when my regular doctor stepped in and starting writing what he said. I think I probably did more talking than the doctor did communicating or explaining through writing. This is why I HATE not having a captioner!
We are not talking about a casual football play here from a coach! We are talking about my brain which is being squished like a stess ball from tumors. To properly understand what is happening in that head and spine there is lots of medical terminology covered within an explanation. Do you honestly feel the same quality of information is being delivered through writing from the sample of what I have given you above? Ok, let's say that you think that some doctors can accomplish writing everything out. Do you think that they will explain it as thoroughly in writing and as efficiently as the time it takes for them to speak it? If so, would it be legible? You see my point here how this last resort form of communication takes longer. The fact of the matter is that in the world today time is money. Therefore, for the deaf person who does not have proper accomodation, words must be shortened or part of the explanation eliminated. In other words, the whole detailed picture of the situation is not delivered or it is oversimplified.
In the next phase of the appointment, he stood up and moved over to the films and started speaking while pointing to stuff. That is where I am like "HOLD ON HERE BUDDY. LET'S JUMP BACK INTO THE DEAF WORLD". LOL no I did not say that but I immediately interupted him and told him that I was not going to be able to understand him if he did that. It is very apparent to me that this man either has no clue of working with anyone who is deaf or the patients he has seen just went along and did not say anything.
Basically I do not know what to tell you. The spinal tumors are very small and I have 6 which have not changed since my January MRI (info I obtained from my appointment last week with the radiation-oncologist). What the neurosurgeon/neurologist guy told me was "I would not recommend a chiro because of the tumors in your spine." Gee thanks man, you were alot of help! He did not recommend any alternative!
Then for some unknown reason (I never asked) he decides to give his medical opinion of my treatment decision after the fact. That is interesting because early on we did ask some other doctors what they would have done but they declined because what is the point. I have had a different neurosurgeon say to me "I never second guess a treatment decision that someone has made. You cannot go back." Why torment you over your decision? You made it and need to find a way to move on. But this guy decides my soul must not be dying enough and he has to stick another dagger in. Without me indicating or asking at all, he tells me that he would have recommended me to have it surgically removed first and then the remainder radiated after the surgery. He also tells me about the biggest risks of surgery which are all not promising (death was not included....that is a much easier route).
Other bits of information that were given I already knew or were kind of obvious. He did say that he did not want me to dive for another 6 months (FOR FRUITING OUT LOUD IT WILL BE NEARLY 2 YEARS BY THEN!). His reasoning did make sense and I was glad that he could formulate an intelligible response on this. In theory, the brain may experience more pressure while at depth (1ATM, 2ATM, 3ATM) and hypothetically could cause more swelling of the tumor while at depth. Seeing as I only have 7 mm of space between the tumors and brainstem, I need to do everything possible to keep it from getting larger or putting more pressure on the brainstem. Of course I am going to consult with other sources on this for second and third opinions. I was told that I could dive right after the treatment a year ago but of course this was before we knew I was going to experience many symptoms from tumor swelling. I decided to refrain from diving until the tumor stopped swelling and I was off the steroids (which is now....a year later). He also said to not strain myself while lifting weights because that puts additional pressure on the skull. Instead of lifting a heavier load I should be doing several reps at a more comfortable weight (which by the way is for muscle toning more than building).
The last thing kind of irritated me especially on a day like yesterday when I was feeling really down (NF2 has been robbing me of my passions away: diving, hiking, rollerblading, photography, the many things I wanted to do on my foreign travels). He wrote "You are doing very well. I know that there are many problems. But the BIG picture is that you are holding in there and hopefully this large tumor will decrease in size over the next few months."
Doing well. What is doing well...compared to what? I HAVE been waiting. Each time the extension gets longer and more things happen. It seems even though I was sick in the beginning I was somewhat better off. My vision was normal at that time, my balance was not the best but much better than n0w, I could see without everything bouncing around me, I did not have facial paralysis and could eat and drink normally, my eye was not in danger of being scratched or getting dried out. I never know what tomorrow is going to bring! It is horrible! From reading I may still end up in a wheelchair or going blind in one eye hence losing my ability to drive!
I just don't know what to say. This reminds me of a time when I was a shaving aide in a nursing home back when I was 17. I tried to be cheerful to all the patients. One day after I finished shaving a man, I said "Have a great day!" as I usually would. The man was in a wheelchair and very lonely. He got very angry and shook his fist at me while I was walking out the door. I was a little shocked. He yelled "OOOOOO You and your great day! You always say, Have a great day! What is so great about it here? You don't know what it is like to be here." At that brief moment I was struck. I really did not have any idea what it was like to be him or to be a patient in a nursing home. I could imagine but never quite fully comprehend how painful and humuliating that could be. I am not sure, but perhaps that is when I first started to awaken to empathy. But alas, that is a whole other story.
Now I am not as mad. I hope it lasts. I will have another head MRI and checkup in 3 months.
Yesterday was the goal to see a new doctor who supposedly knows about NF2 and is a neurologist/neurosurgeon. I have had a stiff back and neck and some pain for a month so we wanted to get him to take a look at it before I went to a chiropractor. We wanted to see if the spinal tumors I have (6 in total) were pressing on any major nerves and the source of my stiffness, pain, and balance problems.
Again I arrive early for the appointment and wait in the lobby but do not see my captioner. I am wondering if she is already setup in back or is late. They call me into this office where my films are all setup on these film lights mounted on the wall.
I see no captioner. I am angry! When I inquire where the captioner is the doctor tries to speak to me which made me even more mad. I inform him that I am deaf and I cannot understand him. He then asks me if I read lips. OOOOOHHH THE WRONG THING TO ASK ME RIGHT NOW!!!!!!!!!! I will refrain from using the cuss words of how I really feel about that.
Ya know, if I had just casually met him on the street, he did not know better, and I had no paper, then I could deal with that question and the ignorance behind it. However, this chump is billing my insurance a healthy wad of cash for this ridiculous fiasco and it is costing me a $15 co-pay, who knows how much in gas as it is a long drive there and back, and my time. There is often traffic both ways and an appointment in North Seattle (even just Seattle) totally blows the day!
Anyhow, I was really frustrated and ready to walk out but alas I drove all the way there (spent my time and gas) and traffic going back home was helacious at that time! So we sat down and I tell him how disappointed I am in a very firm and direct tone (indicating I am not happy in a sad kind of way but an angry kind of way).
LOL So what does he do next? I guess he was trying to make some kind of connection with me or assure me that he was experienced with deafness. The next thing he wrote made me even angrier! He tells me that he has a brother-in-law who is deaf. I have no idea if I rolled my eyes but that was sure my internal expression. I am thinking "Oh here we go! Some self righteous hearing person thinks they know all about deafness just because they happen to KNOW or KNOW OF somebody who is deaf." Knowing and interacting/communicating are two different things here folks. Sure my husband KNEW the singer "Jewel" when he was like 5 years old and lived in Homer, Alaska. He went to school with her. Does that make him in expert on her life?????? I think not.
Forgetting that I am paying for this shingding, I get emotionally involved and fed up with the attitude that some hearing people have about deafness or that all types of deafness are the same. NOT! I know he is most likely talking about a person who was deaf from birth or from childhood (which is a world of difference from being late deafened as an adult). I won't even get into all that right now. Therefore, in my pissed demeanor, I ask him if his brother-in-law was late deafened. He tells me that he thinks he was deaf since a child. I emphatically sign and tell him "That's different! That's different!" He goes on to tell me, that his brother-in-law speaks, writes, and he thought he could sign too. Knowing that the doctor obviously did not know a lick of sign (because I did sign some things to him which he seemed oblivious too) and did not know Jack Shit about deafness, I politely told him that his brother-in-law was probably raised with total communication. ANYWAY......the appointment shall we?
Well I have to admit it was really frustrating under the circumstances. To make things worse, the doctor was not very good at getting his thoughts to paper efficiently. His first statement "You have NF2". There was no question mark or period so I was not sure if he was making a statement, asking a question, confirming or what! I was thinking inside "Yeah no shit sherlock....I have known this for 6 years now and you should have known this if you did your job and read my file before the appointment!" How am I supposed to react to that? I must have had a look of disgust on my face. I really do not know.
Then he wrote something I could not even read or understand. Even reading it now I don't know but I just figured it out from memory as he pointed and moved his leg around. It says "Your leg (which looks like it is written as lej or by) is problems". I was thinking "What?????" which I must have said outloud. LOL Often times he started to write and did not finish or scratched it out. I am looking at the paper now and it says "This". This what???? Then he finally wrote out "What is your major problem". By then I burst out sarcastically "I have NF2. That is a major problem. LOL There are lots of things wrong with me!"
The rest of the dialogue will probably bore you or frustrate you. It is hard to follow and the notes are all over the place which is a chore to make sense of later. Thankfully the second half went a little better when my regular doctor stepped in and starting writing what he said. I think I probably did more talking than the doctor did communicating or explaining through writing. This is why I HATE not having a captioner!
We are not talking about a casual football play here from a coach! We are talking about my brain which is being squished like a stess ball from tumors. To properly understand what is happening in that head and spine there is lots of medical terminology covered within an explanation. Do you honestly feel the same quality of information is being delivered through writing from the sample of what I have given you above? Ok, let's say that you think that some doctors can accomplish writing everything out. Do you think that they will explain it as thoroughly in writing and as efficiently as the time it takes for them to speak it? If so, would it be legible? You see my point here how this last resort form of communication takes longer. The fact of the matter is that in the world today time is money. Therefore, for the deaf person who does not have proper accomodation, words must be shortened or part of the explanation eliminated. In other words, the whole detailed picture of the situation is not delivered or it is oversimplified.
In the next phase of the appointment, he stood up and moved over to the films and started speaking while pointing to stuff. That is where I am like "HOLD ON HERE BUDDY. LET'S JUMP BACK INTO THE DEAF WORLD". LOL no I did not say that but I immediately interupted him and told him that I was not going to be able to understand him if he did that. It is very apparent to me that this man either has no clue of working with anyone who is deaf or the patients he has seen just went along and did not say anything.
Basically I do not know what to tell you. The spinal tumors are very small and I have 6 which have not changed since my January MRI (info I obtained from my appointment last week with the radiation-oncologist). What the neurosurgeon/neurologist guy told me was "I would not recommend a chiro because of the tumors in your spine." Gee thanks man, you were alot of help! He did not recommend any alternative!
Then for some unknown reason (I never asked) he decides to give his medical opinion of my treatment decision after the fact. That is interesting because early on we did ask some other doctors what they would have done but they declined because what is the point. I have had a different neurosurgeon say to me "I never second guess a treatment decision that someone has made. You cannot go back." Why torment you over your decision? You made it and need to find a way to move on. But this guy decides my soul must not be dying enough and he has to stick another dagger in. Without me indicating or asking at all, he tells me that he would have recommended me to have it surgically removed first and then the remainder radiated after the surgery. He also tells me about the biggest risks of surgery which are all not promising (death was not included....that is a much easier route).
Other bits of information that were given I already knew or were kind of obvious. He did say that he did not want me to dive for another 6 months (FOR FRUITING OUT LOUD IT WILL BE NEARLY 2 YEARS BY THEN!). His reasoning did make sense and I was glad that he could formulate an intelligible response on this. In theory, the brain may experience more pressure while at depth (1ATM, 2ATM, 3ATM) and hypothetically could cause more swelling of the tumor while at depth. Seeing as I only have 7 mm of space between the tumors and brainstem, I need to do everything possible to keep it from getting larger or putting more pressure on the brainstem. Of course I am going to consult with other sources on this for second and third opinions. I was told that I could dive right after the treatment a year ago but of course this was before we knew I was going to experience many symptoms from tumor swelling. I decided to refrain from diving until the tumor stopped swelling and I was off the steroids (which is now....a year later). He also said to not strain myself while lifting weights because that puts additional pressure on the skull. Instead of lifting a heavier load I should be doing several reps at a more comfortable weight (which by the way is for muscle toning more than building).
The last thing kind of irritated me especially on a day like yesterday when I was feeling really down (NF2 has been robbing me of my passions away: diving, hiking, rollerblading, photography, the many things I wanted to do on my foreign travels). He wrote "You are doing very well. I know that there are many problems. But the BIG picture is that you are holding in there and hopefully this large tumor will decrease in size over the next few months."
Doing well. What is doing well...compared to what? I HAVE been waiting. Each time the extension gets longer and more things happen. It seems even though I was sick in the beginning I was somewhat better off. My vision was normal at that time, my balance was not the best but much better than n0w, I could see without everything bouncing around me, I did not have facial paralysis and could eat and drink normally, my eye was not in danger of being scratched or getting dried out. I never know what tomorrow is going to bring! It is horrible! From reading I may still end up in a wheelchair or going blind in one eye hence losing my ability to drive!
I just don't know what to say. This reminds me of a time when I was a shaving aide in a nursing home back when I was 17. I tried to be cheerful to all the patients. One day after I finished shaving a man, I said "Have a great day!" as I usually would. The man was in a wheelchair and very lonely. He got very angry and shook his fist at me while I was walking out the door. I was a little shocked. He yelled "OOOOOO You and your great day! You always say, Have a great day! What is so great about it here? You don't know what it is like to be here." At that brief moment I was struck. I really did not have any idea what it was like to be him or to be a patient in a nursing home. I could imagine but never quite fully comprehend how painful and humuliating that could be. I am not sure, but perhaps that is when I first started to awaken to empathy. But alas, that is a whole other story.
Now I am not as mad. I hope it lasts. I will have another head MRI and checkup in 3 months.
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