Tuesday we headed out at 10 am for our 2 pm appointment in Portland. The nausea calmed down and was much better leaving me able to eat again. PHEW!!! However, very LATE in the evening prior I was struck with ear pain in my left ear (opposite of the surgery side). The surgery instructions stated that I was to stop taking anything herbal 1 week (preferably 2 weeks) prior to the surgery. Therefore I did not take any echinacea, multivitamin, vitamin C, or anything else. I thought the ear ache would pass as it had been appearing off and on over the past couple weeks mildly at night and then would disappear by morning. Because I was so out of commission on the weekend, I was awake early, all day, and into the wee hours of tuesday morning making sure I had everything I needed. As a result, with the reduced immunity on the steriods, the stress, and trying to gather everything in the last day I picked up something.
The ear ache accompanied by a headache and fatigue carried with me all day Tuesday. I had the physicians assistant take a look and he could not see anything but proposed I might have picked up a cold or something viral to keep an eye on this week.
The pre-op went well. There was a mistake with reserving a captioner but it still turned out as every examining room is outfitted with a complete technological computer setup and a word processing program. Thus Dr. Delashaw's assistant Steve typed out everything and it worked really well. I feel we had all the questions we could gather in our brain addressed. The entire appointment lasted until a little after 5 pm (no pokes or blood draws either!! :oP )
Afterward we went to the beautiful Spagetti Factory restaurant in Portland just near the hospital on the Willamette river with friends Dave and Christie. They invited us to stay at their condo in Portland just a hop skip and jump up the road from the restaurant and the hospital. We had a lovely evening visiting with them and fortunately some orange juice, acetametaphin, and a good night's sleep cleared up the pain in my left ear by the morning.
Thanks Dave and Christie for your generous hospitality! We had a stressful few day and you really helped us to unwind after a crazy few days! Food, good conversation, a relaxing atmosphere, and a good night's sleep is really what we were needing!
Thursday, September 20, 2007
1 week pre surgery agt OHSU in Portland, OR
Quick note-
I cannot take the Tegretol so I stopped that medication Sunday afternoon. THANKFULY I was able to eat again and even cooked and ate a chicken pizza.
I wrote a bunch and just deleted! I am trying to use a laptop keyboard which is hard. I use ergonomic at home.
I was still woozy monday but was able to eat all meals and be productive getting ready.
Skip brought me homemade pear applesauce and Yumi treated us that evening to my favorite yummy thai food! She also helped me polish off all the last getting ready tasks and cleaning.
Everyone's help this past weekend is appreciated more than we can express!
ok. Gotta go!
I am enjoying feeling better and eating food! - Beck :o)
I cannot take the Tegretol so I stopped that medication Sunday afternoon. THANKFULY I was able to eat again and even cooked and ate a chicken pizza.
I wrote a bunch and just deleted! I am trying to use a laptop keyboard which is hard. I use ergonomic at home.
I was still woozy monday but was able to eat all meals and be productive getting ready.
Skip brought me homemade pear applesauce and Yumi treated us that evening to my favorite yummy thai food! She also helped me polish off all the last getting ready tasks and cleaning.
Everyone's help this past weekend is appreciated more than we can express!
ok. Gotta go!
I am enjoying feeling better and eating food! - Beck :o)
Sunday, September 16, 2007
Sucky Sunday
Oh I feel so sick again. Right now I am trying t eat another cheese stick. It is cold and not sweet. Sweet things makes me gag. I am so sick that I don't even want to drink water unless I really have to.
My friend Angel came over today. I was sleeping on the couch for the first hour she was here. She visited with Harley which was a good thing. Then when I awoke she helped me fold laundry. Actually SHE folded the laundry and I slowly put it away. She gives the BEST hugs! It was nice to see her and to get 2 of her special hugs. That comforted my day!
My beautiful birthday lilies are opening which excites me and creates a pleasant distraction from my malady. It is like when you see baby chickens finally hatch out of the eggs.
I could take it no longer. I asked Harley to call the pharmacist to see if I could get some kind of relief. It is so hard to do anything. I am still in my pajamas and I will stay in them the rest of the day. My head hurts, eyes, muscles are sore, my head feels hot, even though I am deaf my ears are ringing and I cannot hear my own voice anymore, and everytime I move around or sit up I feel like I am going to vomit. It is just awful! The cheese stick feels really good.
The pharmacist said to talk to the doctor so Harley called and spoke to whoever was on call and on staff today. I am to stop taking the Tegretol (hope that does the trick!). My next dosage was to be at 4 pm. The on call doctor felt it was the Tegretol making me sick as it started yesterday and I began the Tegretol at 3 am Friday morning. The steroids I started Tuesday night.
If the pain comes back I am to take the Tegretol again but cut the pills in half. As far as the Zofran, doctors do not like to prescribe it unless it is really needed. First of all, it is INCREDIBLY expensive. Second of all, we don't want to get too many drugs pumping through my body. Thus, I will try going off the Tegretol which hopefully works. If I am still sick, then tomorrow we can get a Zofran prescription called in.
I need to concentrate on typing up instructions for special care I need at the hospital, my meds and supplements, and things I need to pack. It is SO HARD to do right now. I just want to lie around. It is no fun being up when so sick!
The dogs know something is up. Katie lied around depressed all day yesterday even though Marlen had offered her a nice tasty basted raw hide bone which she LOVES. Jake was accepting but it is HIGHLY unusual for Katie to pass up ANY treat. Jake has been sitting outside the kitchen sliding glass door looking inside. He looked really sad this morning. It is raining now so they are probably in their dog houses.
My friend Angel came over today. I was sleeping on the couch for the first hour she was here. She visited with Harley which was a good thing. Then when I awoke she helped me fold laundry. Actually SHE folded the laundry and I slowly put it away. She gives the BEST hugs! It was nice to see her and to get 2 of her special hugs. That comforted my day!
My beautiful birthday lilies are opening which excites me and creates a pleasant distraction from my malady. It is like when you see baby chickens finally hatch out of the eggs.
I could take it no longer. I asked Harley to call the pharmacist to see if I could get some kind of relief. It is so hard to do anything. I am still in my pajamas and I will stay in them the rest of the day. My head hurts, eyes, muscles are sore, my head feels hot, even though I am deaf my ears are ringing and I cannot hear my own voice anymore, and everytime I move around or sit up I feel like I am going to vomit. It is just awful! The cheese stick feels really good.
The pharmacist said to talk to the doctor so Harley called and spoke to whoever was on call and on staff today. I am to stop taking the Tegretol (hope that does the trick!). My next dosage was to be at 4 pm. The on call doctor felt it was the Tegretol making me sick as it started yesterday and I began the Tegretol at 3 am Friday morning. The steroids I started Tuesday night.
If the pain comes back I am to take the Tegretol again but cut the pills in half. As far as the Zofran, doctors do not like to prescribe it unless it is really needed. First of all, it is INCREDIBLY expensive. Second of all, we don't want to get too many drugs pumping through my body. Thus, I will try going off the Tegretol which hopefully works. If I am still sick, then tomorrow we can get a Zofran prescription called in.
I need to concentrate on typing up instructions for special care I need at the hospital, my meds and supplements, and things I need to pack. It is SO HARD to do right now. I just want to lie around. It is no fun being up when so sick!
The dogs know something is up. Katie lied around depressed all day yesterday even though Marlen had offered her a nice tasty basted raw hide bone which she LOVES. Jake was accepting but it is HIGHLY unusual for Katie to pass up ANY treat. Jake has been sitting outside the kitchen sliding glass door looking inside. He looked really sad this morning. It is raining now so they are probably in their dog houses.
How am I doing?
TERRIBLE! AWFUL! I just threw up violently again so I am trying to eat and hold down a cheese stick so that I can take my Diamox medicine for the eyes. I am late on taking the Tegretol by an hour and 20 minutes now. The reason being I was so sick that I meandered upstairs and fell asleep. When I woke I tried to eat some rice pudding which encouraged a violent hurl when I was done.
So now my stomach is empty again and I cannot take the medicine. I am trembling sitting here trying to eat this cheese stick so I can take the medicine. Maybe if I successfully hold it down I will eat another, take the meds, and go to bed really quick before I hurl again.
I hate being sick. I hope I will not be sick all week and for my birthday. I guess no matter what, surgery or not in a week, I would have been sick anyhow. I guess it is good that I will go through a week of this instead of month. This really stinks.
On top of that, my face is starting to swell like a pumpkin head again. I could feel it coming on this evening. When I awoke my face was swollen.
One of the positives of the day is that I had some gracious friends come over to help us. I am so glad because it was hard enough to do some laundry.
Thank you Marlen, George, Karen and Sam who super duper cleaned the whole house, and Kristy. I would not have been able to do any of the things you did. It was nice to see and visit with you and you motivated Harley and I. I am glad I made those darn lists a week ago. There is no way I could have done it now.
Thank you IMMENSELY for all your help!
I hope tomorrow is a better day. I don't feel like going through this all week. I need some Zofran!
So now my stomach is empty again and I cannot take the medicine. I am trembling sitting here trying to eat this cheese stick so I can take the medicine. Maybe if I successfully hold it down I will eat another, take the meds, and go to bed really quick before I hurl again.
I hate being sick. I hope I will not be sick all week and for my birthday. I guess no matter what, surgery or not in a week, I would have been sick anyhow. I guess it is good that I will go through a week of this instead of month. This really stinks.
On top of that, my face is starting to swell like a pumpkin head again. I could feel it coming on this evening. When I awoke my face was swollen.
One of the positives of the day is that I had some gracious friends come over to help us. I am so glad because it was hard enough to do some laundry.
Thank you Marlen, George, Karen and Sam who super duper cleaned the whole house, and Kristy. I would not have been able to do any of the things you did. It was nice to see and visit with you and you motivated Harley and I. I am glad I made those darn lists a week ago. There is no way I could have done it now.
Thank you IMMENSELY for all your help!
I hope tomorrow is a better day. I don't feel like going through this all week. I need some Zofran!
Saturday, September 15, 2007
blah!
I am incredibly sick. I feel like I was either t0ssed upside down on the zipper at the fair or sea sick from 20 foot seas. I hate being nauseated!
This evening I had acid reflux that went up my nose. Ow! I don't know if it is from the steroids or from the Tegretol or the mixture of both but this really bites the big bunion!
I certainly did not expect or foresee myself as being ill BEFORE the surgery. I did not see it coming at all. Still it is better than not having the medicine and having the trigeminal nerve attacks which are very scary, painful, and emotionally exhausting.
I hope this goes away. I don't want to be sick for a week. That would be no fun to be sick on my birthday. Unfortunately I have no choice in the matter.
I just don't like being sick. It makes it very difficult to get things done and get prepared as my stomach churns everytime I get up to do something. I fell asleep earlier on my bed because I was sick after taking the last steroid dose. I don't know if my mistake was making a mango smoothie to take with it that had too much of an acid content. Or maybe I just did not have enough in my stomach to make it agreeable. Of course I have to hold my cookies because there is no way I want to upchuck the dose that keeps the nerve pain at bay.
I don't like being sick.
This evening I had acid reflux that went up my nose. Ow! I don't know if it is from the steroids or from the Tegretol or the mixture of both but this really bites the big bunion!
I certainly did not expect or foresee myself as being ill BEFORE the surgery. I did not see it coming at all. Still it is better than not having the medicine and having the trigeminal nerve attacks which are very scary, painful, and emotionally exhausting.
I hope this goes away. I don't want to be sick for a week. That would be no fun to be sick on my birthday. Unfortunately I have no choice in the matter.
I just don't like being sick. It makes it very difficult to get things done and get prepared as my stomach churns everytime I get up to do something. I fell asleep earlier on my bed because I was sick after taking the last steroid dose. I don't know if my mistake was making a mango smoothie to take with it that had too much of an acid content. Or maybe I just did not have enough in my stomach to make it agreeable. Of course I have to hold my cookies because there is no way I want to upchuck the dose that keeps the nerve pain at bay.
I don't like being sick.
Friday, September 14, 2007
Nice Surprise Today
Harley and I went walking with the dogs in Carnation on the Snoqualmie Valley trail today to lead a walk with team survivor northwest.
On the drive home we were both really stressed out about the fast approaching surgery date and miscommunication of expectations on staying down in Oregon a week. (I got it in my head we were staying there the from the pre-op appointment until surgery which is less than a week. Harley thought we were driving back and then going back down for the surgery).
Anyhow, we were both stressed. It has been a stressful couple days and thinking clearly has been challenging. The trigeminal neuralgia episodes have left me exhausted and have had an effect on Harley too.
When I climbed the stairs to the front door after being frustrated, I found a pretty packaged green and brown box propped against the door. Inside the package were flowers from Harley's mom (my mother-in-law) for my birthday which is next Saturday.
They could not have arrived at a more perfect time! First of all I love opening packages and second of all I love flowers. What a great emotional uplift! The flowers are lilies (very aromatic when open) in nice fall colors (it looks like there are both orange and yellow ones) with a nice rust color vase to match. How exciting!
Harley wanted to open them right away and I told him the flowers need special care and we needed to read the directions before just dunking them in water.
This arrived at a perfect time as the flowers will be blooming during the time we are here.
Thank you Cheryl! That was so nice of you and it uplifted both of our spirits! :o)
Also, my mom gave me a beautiful pot of mums that looked purple or pink in color as they were not fully opened. We celebrated my birthday early over labor day weekend at the beach with my sister and her boyfriend's family.
Luckily I had an empty pot sitting on my kitchen window sill to which I wanted to buy a nice plant to fill it. The pot of mums fit in there perfectly and they are lovely! The centers are white and green with lavendar color on the outer petals.
Thanks mom! :o)
On the drive home we were both really stressed out about the fast approaching surgery date and miscommunication of expectations on staying down in Oregon a week. (I got it in my head we were staying there the from the pre-op appointment until surgery which is less than a week. Harley thought we were driving back and then going back down for the surgery).
Anyhow, we were both stressed. It has been a stressful couple days and thinking clearly has been challenging. The trigeminal neuralgia episodes have left me exhausted and have had an effect on Harley too.
When I climbed the stairs to the front door after being frustrated, I found a pretty packaged green and brown box propped against the door. Inside the package were flowers from Harley's mom (my mother-in-law) for my birthday which is next Saturday.
They could not have arrived at a more perfect time! First of all I love opening packages and second of all I love flowers. What a great emotional uplift! The flowers are lilies (very aromatic when open) in nice fall colors (it looks like there are both orange and yellow ones) with a nice rust color vase to match. How exciting!
Harley wanted to open them right away and I told him the flowers need special care and we needed to read the directions before just dunking them in water.
This arrived at a perfect time as the flowers will be blooming during the time we are here.
Thank you Cheryl! That was so nice of you and it uplifted both of our spirits! :o)
Also, my mom gave me a beautiful pot of mums that looked purple or pink in color as they were not fully opened. We celebrated my birthday early over labor day weekend at the beach with my sister and her boyfriend's family.
Luckily I had an empty pot sitting on my kitchen window sill to which I wanted to buy a nice plant to fill it. The pot of mums fit in there perfectly and they are lovely! The centers are white and green with lavendar color on the outer petals.
Thanks mom! :o)
NEW 9 days and a few hours pre surgery
Wow! I feel really spaced out. Just a second my doctor just emailed me.
Ok that was really nice. The doctor wrote me a nice email telling me to hang in there.
Basically what happened is that the tumor is pressing on my facial nerve and trigeminal ganglia (maybe they are the same). As a result, I got shocking pain in my ear and face like I was being electricuted.
Steroids were prescribed to me (4 mg a day of decadron). Harley spoke with the doctor on Tuesday after the first episode which was really stunning (seriously like someone was shocking my face and ear with a tazer!). My surgeon wanted to move up the surgery if I continued to have these episodes after starting the steroids.
Let's just skip over because I am too tired to type. As of 3:09 this morning I had 9 episodes. The one last night/this morning lasted nearly 20 minutes. I got a different medication to also take for pain called Tegretol (did I already say that).
Anyhow, I am really spaced right now and LOL I was trying to figure out what was on my head and then realized I am wearing a baseball cap from my walk this morning!
Ok the new schedule:
I was kind of hoping maybe we could go back to the October date until I had the 9th episode this morning. Pooper. I guess that was a sign that I have to stick with surgery in 9 days.
I figured 2 things to come to acceptance of this:
A) The steroids seem to manifest the worst side effects in 3 weeks. If surgery is at the original date I would experience these bad things. Having surgery earlier means that hopefully I will not have to take the steroids as long and this trigeminal neuralgia will be relieved.
B) The steroids alone are not working. The additional drug I am taking really is not good for me at all but it beats having the pain. Having surgery earlier means having to take less of this medication over a shorter period of time hopefully. If I had the surgery later, we would need to keep increasing the dose of the second medication.
That means I would be on 3 meds. Not too good.
Additionally, the steriods affect the immune system so it is better to be on them a shorter time presurgery to lessen the chance of infection.
Oh yeah new schedule:
September 18th - pre-op appointment in Portland
September 24th - "the" surgery
After that ICU (best case 1 day) and then I am moved into a regular room until I can be released.
Ok that was really nice. The doctor wrote me a nice email telling me to hang in there.
Basically what happened is that the tumor is pressing on my facial nerve and trigeminal ganglia (maybe they are the same). As a result, I got shocking pain in my ear and face like I was being electricuted.
Steroids were prescribed to me (4 mg a day of decadron). Harley spoke with the doctor on Tuesday after the first episode which was really stunning (seriously like someone was shocking my face and ear with a tazer!). My surgeon wanted to move up the surgery if I continued to have these episodes after starting the steroids.
Let's just skip over because I am too tired to type. As of 3:09 this morning I had 9 episodes. The one last night/this morning lasted nearly 20 minutes. I got a different medication to also take for pain called Tegretol (did I already say that).
Anyhow, I am really spaced right now and LOL I was trying to figure out what was on my head and then realized I am wearing a baseball cap from my walk this morning!
Ok the new schedule:
I was kind of hoping maybe we could go back to the October date until I had the 9th episode this morning. Pooper. I guess that was a sign that I have to stick with surgery in 9 days.
I figured 2 things to come to acceptance of this:
A) The steroids seem to manifest the worst side effects in 3 weeks. If surgery is at the original date I would experience these bad things. Having surgery earlier means that hopefully I will not have to take the steroids as long and this trigeminal neuralgia will be relieved.
B) The steroids alone are not working. The additional drug I am taking really is not good for me at all but it beats having the pain. Having surgery earlier means having to take less of this medication over a shorter period of time hopefully. If I had the surgery later, we would need to keep increasing the dose of the second medication.
That means I would be on 3 meds. Not too good.
Additionally, the steriods affect the immune system so it is better to be on them a shorter time presurgery to lessen the chance of infection.
Oh yeah new schedule:
September 18th - pre-op appointment in Portland
September 24th - "the" surgery
After that ICU (best case 1 day) and then I am moved into a regular room until I can be released.
Wednesday, September 12, 2007
1 month 9 days before surgery OR SOONER
Don't feel much like typing right now. Yesterday (1 month 10 days post surgery) I had a scary episode and painful attack to the ear and upper cheek/jaw/face like electricution (who cares if it is not spelled correctly).
Anyhow sounds like Trigeminal Neuralgia. See the link in the post title by clicking on the lighthouse icon.
I just experienced my 4th episode that was not as bad as the first fortunately.
I am on steroids again (4 mg of decadron a day).
Today we moved up my followup MRI to immediateness (head and spine). Fortunately and thankfully my friend Skip brought me to my appointment. Harley was concerned about me driving myself to Seattle in the advent that I had another attack (which just so happened - 3rd attack- on HWY 520 approaching the bridge over Lake Washington.
Thanks Skip! I really enjoyed having you there with me. Harley and I GREATLY appreciate your help!!!!!
So we will play it by ear (funny pun eh....did not realize until after I wrote it). If the steroids do not alleviate the attacks and it continues, we will most likely need to have the surgery sooner.
I need to rest for now.
Have a good evening/sleep/morning/day!
- Beck
Anyhow sounds like Trigeminal Neuralgia. See the link in the post title by clicking on the lighthouse icon.
I just experienced my 4th episode that was not as bad as the first fortunately.
I am on steroids again (4 mg of decadron a day).
Today we moved up my followup MRI to immediateness (head and spine). Fortunately and thankfully my friend Skip brought me to my appointment. Harley was concerned about me driving myself to Seattle in the advent that I had another attack (which just so happened - 3rd attack- on HWY 520 approaching the bridge over Lake Washington.
Thanks Skip! I really enjoyed having you there with me. Harley and I GREATLY appreciate your help!!!!!
So we will play it by ear (funny pun eh....did not realize until after I wrote it). If the steroids do not alleviate the attacks and it continues, we will most likely need to have the surgery sooner.
I need to rest for now.
Have a good evening/sleep/morning/day!
- Beck
Monday, September 10, 2007
1 month 11 days PRE surgery
Wow! Time is totally escaping me! I have been doing fine but just very busy. Believe me I have no lack of things to write about. In fact I need some sort of telepathic electronic device to transmit my thoughts into a computer. One of those pads you talk into that Captain Picard had on StarTrek the Next Generation would be cool! I do so much thinking that I actually come to believe I may have already written something here until I visit and come to discover "Oh I guess I only wrote a couple posts last month".
I have drafts that I started writing and did not finish or post from a month or two ago and then I have a list here of at least six things I wanted to write about AND thought about last week. The problem is that I am always thinking of these things at an inappropriate time when I am not sitting at the computer allowing the flow of creativity to emit from my fingertips (my thinking happens when I am out walking the dogs, running, or should be or at least trying to sleep!).
Anyhow, I just put the time remaining into perspective and started the count. I did not realize it was that short of days until my surgery. That is less than a month and a half!!!! I thought I had 2 months!
There are lots of preparations to be made for surgery. In case you were wondering, that is what I have been doing. There is not time to mope around. I did that back in May and June (and maybe part of April). Now I have turned from grasshopper into ant. It is time to get things all in check as I really don't know what my state will be afterward or how long or difficult recovery be. I have made lots of lists: lists of things inside the house to do, lists of things outside the house to do, lists for keeping track of things I take care for anyone who may need to help me afterward, list of things to pack for the surgery, list of instructions to give medical staff, list of appointments I need to schedule before the surgery (MRI of head again and spine this time, followup visit with the neuro-ophthalmologist, dental cleaning), etc. lists.
As part of the preparation I also need to adhere to a better sleeping schedule which is VERY difficult! I thought last night would be a good time to start. The plan was to go to bed early and get up at the crack of dawn. Well 8 pm rolled around and I was just finishing cooking dinner! After taking my Diamox, melatonin, and chamomile tea I turned the lights out at 10:20 pm and had set my alarm for 6:20 am.
What a miserable night. I don't know if I was super anxious to wake up early and get a lot of stuff done but I had HORRIBLE sleep. The first time I woke up was about an hour after I laid down. I think I woke up about 6 times during the course of the evening. Everytime I would excitedly look at the clock hoping I got at least 4 hours of good sleep! To my dismay I was waking up every hour or two. The result was a big dang headache when it was finally time to get up and puffball eye lids! Surely that cannot be good for the brain.
Fortunately I was able to stay awake the whole day (it went by so fast) and I was able to take the dogs on an hour morning brisk walk, go to water aerobics, and lift weights for a half hour afterward. LOL After all that I was pretty tired but I managed to stay awake and just dosed off for maybe a half hour after eating dinner.
My goal tonight is to be in bed by midnight so I am going to have to end this here and maybe I will get to those other posts I wanted to write tomorrow (no promises though as these lists and tasks take priority).
Have a good week and send me good sleep vibes. I HAVE to get some consistent sleep!
- Beck :o)
I have drafts that I started writing and did not finish or post from a month or two ago and then I have a list here of at least six things I wanted to write about AND thought about last week. The problem is that I am always thinking of these things at an inappropriate time when I am not sitting at the computer allowing the flow of creativity to emit from my fingertips (my thinking happens when I am out walking the dogs, running, or should be or at least trying to sleep!).
Anyhow, I just put the time remaining into perspective and started the count. I did not realize it was that short of days until my surgery. That is less than a month and a half!!!! I thought I had 2 months!
There are lots of preparations to be made for surgery. In case you were wondering, that is what I have been doing. There is not time to mope around. I did that back in May and June (and maybe part of April). Now I have turned from grasshopper into ant. It is time to get things all in check as I really don't know what my state will be afterward or how long or difficult recovery be. I have made lots of lists: lists of things inside the house to do, lists of things outside the house to do, lists for keeping track of things I take care for anyone who may need to help me afterward, list of things to pack for the surgery, list of instructions to give medical staff, list of appointments I need to schedule before the surgery (MRI of head again and spine this time, followup visit with the neuro-ophthalmologist, dental cleaning), etc. lists.
As part of the preparation I also need to adhere to a better sleeping schedule which is VERY difficult! I thought last night would be a good time to start. The plan was to go to bed early and get up at the crack of dawn. Well 8 pm rolled around and I was just finishing cooking dinner! After taking my Diamox, melatonin, and chamomile tea I turned the lights out at 10:20 pm and had set my alarm for 6:20 am.
What a miserable night. I don't know if I was super anxious to wake up early and get a lot of stuff done but I had HORRIBLE sleep. The first time I woke up was about an hour after I laid down. I think I woke up about 6 times during the course of the evening. Everytime I would excitedly look at the clock hoping I got at least 4 hours of good sleep! To my dismay I was waking up every hour or two. The result was a big dang headache when it was finally time to get up and puffball eye lids! Surely that cannot be good for the brain.
Fortunately I was able to stay awake the whole day (it went by so fast) and I was able to take the dogs on an hour morning brisk walk, go to water aerobics, and lift weights for a half hour afterward. LOL After all that I was pretty tired but I managed to stay awake and just dosed off for maybe a half hour after eating dinner.
My goal tonight is to be in bed by midnight so I am going to have to end this here and maybe I will get to those other posts I wanted to write tomorrow (no promises though as these lists and tasks take priority).
Have a good week and send me good sleep vibes. I HAVE to get some consistent sleep!
- Beck :o)
Monday, August 27, 2007
Brain Busters (Boosters)
This evening I was gloating to Harley about the mental recognition/intellectual improvements I have made this year (primarily most recently).
There is a great article in the March 26, 2007 issue of Newsweek under "Health for Life" titled "Exercise And the Brain". The article talks about how exercise can help the brain grow new nerve cells . As many of you are aware, I started training for the Seattle marathon in May 2006 and have continued to keep up a fit regimen. As a result, I have found that I have made major improvements most especially in 2007 with my mental concentration and comprehension abilities (which I will discuss in another post).
Now back to my discussion with Harley -
He was telling me of a man whom he met recently who also underwent a very extensive and intense brain surgery (it sounded terrifying actually). He also had been subject to radiation treatments as they tried everything in an effort to treat his brain cancer. After 3 or 4 years and a brain surgery he is in recovery and is an active scuba diver even!
He told Harley how exercise was really important for him in preparing for the surgery and going through the treatments. In addition, he said that working on problem solving math skills was really important in exercising the brain.
Just a couple days ago when feeling proud of myself for gaining back lots of brain function, I had recalled that my area regarding mathematics had been damaged (as it has for many other brain tumor patients). It is an area that I truly have not exercised lately and I was curious if I could gain those skills back or if they had improved also. Thus I found mention of this topic rather intriguing.
For those who have lost vestibular function (like myself) and may also have a vision disturbance (like my oscillopsia) it is very difficult to coordinate the body in ways it did before and to multi-task. So much mental energy is being drawn on and focused toward trying to maintain a sense of balance. Put deafness on top of that too which is another added mental adjustment. It all takes time. Therefore we were problem solving how I could possibly work my mind mathematically while trying to work my body physically in a safe manor as to not insure myself (when doing something physical like running or walking or DRIVING my brain is focused on that one skill of paying attention; if I look off to the side I could lose my balance and fall or drive off the road! - no joke!)
So what Harley thought up was trying it out while lifting weights. The idea is to keep the exercise continuous and not take breaks. When I lift I do this technique by working on an opposing muscle next (moving from biceps to triceps). Seeing as I am sitting and using nautilus equipment I can try to solve a math problem in my head while doing the exercise (I would have a sheet of problems with me). Then before going on to the next exercise I could look to see if my answer was correct.
This evening half way through walking the dogs I decided to give it a try using simple multiplication tables. WOW! LOL It really is hard to concentrate the more intense the workout!
I always walk at a very brisk pace (as evidenced from walking a marathon and completing the 26.2 miles in under 7 hours). Not intentionally, my evening walk was more taxing in that it involved hills and became dark with only street lights when I had the wild idea to try this out. Further, I had the dogs on the leash and I need to mindful when it gets dark that I am not walking in a zigzag pattern throwing me off balance and having periods of pulling the leash and then having slack.
I started mentally going through multiplication tables as I was walking up the big hill. It was still dusk so I could see better and with my balance it is easier going up then coming down. By the time I reached the top the second time it was dark and I got confused. It took me long to figure out 7 times 9, 7 times 8, 8 times 9. I had to really mentally work and break it down to figure these out. It seems the higher numbers of 6, 7, 8, and 9 I had difficulty with and by the time I got half way down the hill I was able to find a system to figure out the answers.
At the bottom of the hill in walking in the flat part of the neighborhood we went to, I decided to move onto a new challenge: Algebra
The Algebra (although very simple equations) I found easier and it was easy after awhile to quickly find the patterns to determine the next numbers. It took me going through a couple equations and plugging in various numbers to realize there was a pattern. This is an area of my brain that has been missing for a couple years so it was nice to be able to recall the old stored information.
My equations were:
x + 2 = y
2x+ 2 = y
2x+ 2n = y
x - 2 = y
2x - 2 = y
2x - 2n = y
I used numbers 1 through 9 or 10 for each of the variables x and n in each equation.
The most difficult was the last equation where I was again walking the rest of the way down the hill to the truck where there was low light. LOL If a neighborhood car came by (bright lights in your face) of course that pretty much eliminated my mathematical problem solving for the moment.
Interesting activity and challenge
There is a great article in the March 26, 2007 issue of Newsweek under "Health for Life" titled "Exercise And the Brain". The article talks about how exercise can help the brain grow new nerve cells . As many of you are aware, I started training for the Seattle marathon in May 2006 and have continued to keep up a fit regimen. As a result, I have found that I have made major improvements most especially in 2007 with my mental concentration and comprehension abilities (which I will discuss in another post).
Now back to my discussion with Harley -
He was telling me of a man whom he met recently who also underwent a very extensive and intense brain surgery (it sounded terrifying actually). He also had been subject to radiation treatments as they tried everything in an effort to treat his brain cancer. After 3 or 4 years and a brain surgery he is in recovery and is an active scuba diver even!
He told Harley how exercise was really important for him in preparing for the surgery and going through the treatments. In addition, he said that working on problem solving math skills was really important in exercising the brain.
Just a couple days ago when feeling proud of myself for gaining back lots of brain function, I had recalled that my area regarding mathematics had been damaged (as it has for many other brain tumor patients). It is an area that I truly have not exercised lately and I was curious if I could gain those skills back or if they had improved also. Thus I found mention of this topic rather intriguing.
For those who have lost vestibular function (like myself) and may also have a vision disturbance (like my oscillopsia) it is very difficult to coordinate the body in ways it did before and to multi-task. So much mental energy is being drawn on and focused toward trying to maintain a sense of balance. Put deafness on top of that too which is another added mental adjustment. It all takes time. Therefore we were problem solving how I could possibly work my mind mathematically while trying to work my body physically in a safe manor as to not insure myself (when doing something physical like running or walking or DRIVING my brain is focused on that one skill of paying attention; if I look off to the side I could lose my balance and fall or drive off the road! - no joke!)
So what Harley thought up was trying it out while lifting weights. The idea is to keep the exercise continuous and not take breaks. When I lift I do this technique by working on an opposing muscle next (moving from biceps to triceps). Seeing as I am sitting and using nautilus equipment I can try to solve a math problem in my head while doing the exercise (I would have a sheet of problems with me). Then before going on to the next exercise I could look to see if my answer was correct.
This evening half way through walking the dogs I decided to give it a try using simple multiplication tables. WOW! LOL It really is hard to concentrate the more intense the workout!
I always walk at a very brisk pace (as evidenced from walking a marathon and completing the 26.2 miles in under 7 hours). Not intentionally, my evening walk was more taxing in that it involved hills and became dark with only street lights when I had the wild idea to try this out. Further, I had the dogs on the leash and I need to mindful when it gets dark that I am not walking in a zigzag pattern throwing me off balance and having periods of pulling the leash and then having slack.
I started mentally going through multiplication tables as I was walking up the big hill. It was still dusk so I could see better and with my balance it is easier going up then coming down. By the time I reached the top the second time it was dark and I got confused. It took me long to figure out 7 times 9, 7 times 8, 8 times 9. I had to really mentally work and break it down to figure these out. It seems the higher numbers of 6, 7, 8, and 9 I had difficulty with and by the time I got half way down the hill I was able to find a system to figure out the answers.
At the bottom of the hill in walking in the flat part of the neighborhood we went to, I decided to move onto a new challenge: Algebra
The Algebra (although very simple equations) I found easier and it was easy after awhile to quickly find the patterns to determine the next numbers. It took me going through a couple equations and plugging in various numbers to realize there was a pattern. This is an area of my brain that has been missing for a couple years so it was nice to be able to recall the old stored information.
My equations were:
x + 2 = y
2x+ 2 = y
2x+ 2n = y
x - 2 = y
2x - 2 = y
2x - 2n = y
I used numbers 1 through 9 or 10 for each of the variables x and n in each equation.
The most difficult was the last equation where I was again walking the rest of the way down the hill to the truck where there was low light. LOL If a neighborhood car came by (bright lights in your face) of course that pretty much eliminated my mathematical problem solving for the moment.
Interesting activity and challenge
New Twist On My Classic Mango Shake
Wow! I have developed a new favorite concoction that just hits the spot!
If you have been reading with me for a couple years you know about my craze and invention of my version of the mango shake I created in 2005. Smoothies and shakes are a real wonder for those of us with NF2 because it is quite common to develop facial paralysis which makes eating a chore and burden. But also many of us NF2ers succumb to swallowing and chewing difficulties. Thus foods that glide nicely down the esophagus and that taste good are a pleasurable delight!
My facial paralysis at first glance is mild now but in December 2004 through 2005 I could not even drink from a glass and spent a year sipping things through a straw. In addition, chewing was hard and I still do have certain swallowing difficulties (why can't they make all vitamins tiny?). Hence the mango shake was born. I think if you go back to the 2005 archive my post title is "Mango Shake" if you are interested in trying my original recipe.
Well I can drink out of a glass now (and have been able to for over a year now). Still, I sure do enjoy the ease, convenience, and texture (ALSO TASTE) of yogurt smoothies or shakes. Often in a hurry I will grab a Danon light and fit smoothie which is an easy meal as it is quick, clean, and no chewing for a long time to consume it!
Here is my new spin and enhancement of the "mango shake":
Now known as the Tropical Fruity Smoothie
1 frozen C & W brand Tropical Smoothie package (it has chunks of yogurt and fruit - pineapple, mango, and maybe banana......Sorry Scott - my brother who is allergic to bananas)
A little bit of 8th continent fat free original soy milk (just enough to cover half the package contents
A little bit of L&A all natural no perservatives pineapple coconut juice (this is expensive and found near the pomegrante and blueberry juices in the organic juice section of the grocery store; I use just a small amount for the flavor)
1/2 cup to a cup of fresh honey dew melon chopped
1/4 to 1/2 of fresh sliced mango
Instructions:
Dethaw (Correction: I mean DEFROST. This a minor example of the complication I now have in usage and recollection of vocabulary words. Brain tumors...gotta love them.) the frozen smoothie package in the microwave for 2 minutes.....Don't fry it! The idea is that it will still be frozen but you just want to soften it enough so it purees in the blender nicely.
From the micro...add the package contents to the blender.
Pour the soy milk over half the package contents in blender.
Now add the pineapple coconut juice (1/4 to 1/3 cup)
Blend together (might want to use the pulse mode so it all gets blended and smoothed together)
Add the chopped melon and sliced mango and blend.
VOILA! ENJOY THIS WONDERFUL TREAT! I just did! :o)
Sunday, August 26, 2007
Surgery Date Scheduled
Well as of this past Friday we have a confirmation of a surgery date. As a bonus I got the date which was my first choice AND in the MORNING ON A MONDAY. This is all good. Why I stress the morning and monday is that according to the article in the July Issue of UW News and World Report (recommended by Marie Drew) it suggests making surgeries in the morning and on Monday or earlier in the week when a doctor is "refreshed".
Thanks mom and dad and aunt Barb and uncle Jason for providing me copies of the issue with the article in it. While I was visiting on the family trip the last week of July, I went through this fantastic coverage to learn everything about having a surgery, choosing a hospital, surgery time and what to know (what happens before and after). This was a GREAT resource!
Thank you so much Marie for informing me about it when I was asking all the NF2 crew members specifics about their surgery experiences. LOL I highlighted the article like mad! It was like I was back in grad school studying the finer points of academia for the purpose of attaining knowledge for discussion, improvement of self skills, and eventually putting things into practice and forming a portfolio.
The facility I have chosen will be the Oregon Health and Science University in Portland, OR and the surgeons will be Dr. Johnny Delashaw and his surgical partner Dr. Sean McMenomy.
A link to OHSU and credentials of Dr. Delashaw are provided in the post title above. (just click on the lighthouse icon).
Interestingly I just added the surgery to my little appointment book. While doing so I noticed that each page has little quotes above (I knew that but had not read or noticed them for awhile). The page for the week of October 22nd has a very fitting and ironic quote which I will share here.
"Man's brain is, after all, the greatest natural resource."
- Karl Brandt
Thanks mom and dad and aunt Barb and uncle Jason for providing me copies of the issue with the article in it. While I was visiting on the family trip the last week of July, I went through this fantastic coverage to learn everything about having a surgery, choosing a hospital, surgery time and what to know (what happens before and after). This was a GREAT resource!
Thank you so much Marie for informing me about it when I was asking all the NF2 crew members specifics about their surgery experiences. LOL I highlighted the article like mad! It was like I was back in grad school studying the finer points of academia for the purpose of attaining knowledge for discussion, improvement of self skills, and eventually putting things into practice and forming a portfolio.
The facility I have chosen will be the Oregon Health and Science University in Portland, OR and the surgeons will be Dr. Johnny Delashaw and his surgical partner Dr. Sean McMenomy.
A link to OHSU and credentials of Dr. Delashaw are provided in the post title above. (just click on the lighthouse icon).
Interestingly I just added the surgery to my little appointment book. While doing so I noticed that each page has little quotes above (I knew that but had not read or noticed them for awhile). The page for the week of October 22nd has a very fitting and ironic quote which I will share here.
"Man's brain is, after all, the greatest natural resource."
- Karl Brandt
Thursday, August 23, 2007
Where to put the tumors once they are removed?
This is interesting.
I can honestly admit that earlier on in my life I had never thought about donating a tumor as part of my body. Of course everyone who drives a car and gets a new license is faced with the question of being an organ donor but never of donating a mutated part.
I guess I never thought about tumors being in my head that would have to be removed. Well heck they mind as well go to some use and not be wasteful or purposeless that they grew there. I have heard about tumor banks and other NF2 patients donating their tumors for research but I never crossed that bridge before until now. Upon researching funding opportunities and clinical trials for NF, I came upon this thought provoking topic which has my wheels turning. I guess I shall mark that also on my to do list of things that must be taken care of before the surgery.
https://www.ctf.org/pdf/clinical-trials/donate-tissue.pdf
I can honestly admit that earlier on in my life I had never thought about donating a tumor as part of my body. Of course everyone who drives a car and gets a new license is faced with the question of being an organ donor but never of donating a mutated part.
I guess I never thought about tumors being in my head that would have to be removed. Well heck they mind as well go to some use and not be wasteful or purposeless that they grew there. I have heard about tumor banks and other NF2 patients donating their tumors for research but I never crossed that bridge before until now. Upon researching funding opportunities and clinical trials for NF, I came upon this thought provoking topic which has my wheels turning. I guess I shall mark that also on my to do list of things that must be taken care of before the surgery.
https://www.ctf.org/pdf/clinical-trials/donate-tissue.pdf
Monday, August 20, 2007
A very BRIEF update
HI!
Sorry to keep you waiting.
We were in Portland last weekend as we had a 3rd appointment (consultation) at the Oregon Health and Science University. It went well. We were actually there a long time. I have a very complicated case. I guess I am just complex and complicated in general. (chuckle)
Upon returning from my family visit the end of July/beginning of August I immediately had consultation appointment #2 at the University of Washington. That one was kind of hairy. Neither Harley or I felt comfortable. We did learn lots of information (things I actually missed as the appointment flowed too fast) and I was fortunately able to review once recieving the captioning notes.
I have yet to go through the notes from Friday. Interestingly, without even giving the doctor in Portland the questions beforehand, he nailed just about a whole page of my questions before I even asked anything! We were really impressed.
So to refresh at this point:
5 opinions from neurosurgeons have been collected
2 surgeons from CA, 2 from Seattle, and 1 from Oregon
Of course there is not a cure so the goal is to address the largest tumor pressing on the brainstem. The idea is to attempt to do the least harm as possible with the hope that I can be restored to my present state.
Even though it is tough and I am doing the best since my last treatment in 2004, surgery is still emminent at this point as I am in a position of walking a tight rope. I have been told it is amazing and miraculous that I have walked a full marathon or am even walking. The idea is to go in as strong as possible so I have a good shot at recovery.
There are other tumors to address and future treatments/surgeries but at this point we are focusing on this big boy that has to be reduced no matter what if I am to have a chance at maintaining where I am and even living.
Oh, and yes there is another big tumor (meningioma) which was one of the tumors to be considered for treatment at the time of radiosurgery. Things did not go according to plan so it was never treated. Therefore, that tumor can be taken out at the same time. It is called a "kissing meningioma" as it is "kissing" or touching the "big boy" vestibular schwannoma which will be debulked.
To eliminate confusion I will paraphrase:
Note: the MRI image is flipped around. The tumors I am having surgery for are on the right side of my head. In the picture however, they are shown on the left side.
The large tumor you see on the film I posted under the title "Want to see my brain?" will be debulked. What that means is that the surgeon will go in and remove what he can without severing the nerves that some of the tumor will be adhered to and without peeling away tumor which has adhered to the brainstem.
So if you are following me, that means part of the tumor will be left behind. It is pretty impossible to remove it fully as these types of tumors like to stick to vital structures and they have a very high chance of growing back.
So yeah, at some point it will most likely regrow (hopefully not too soon and hopefully by then there will be a cure or some less invasive and more viable form of treatment).
The meningioma on the other hand will be removed entirely. Meningiomas are tumors that grow in the lining of the brain and not in the brain matter itself. Think of it as a piece of syran wrap on a hunk of cheese. The tumor is in the syran wrap and not in the cheese.
Alrighty. With the out of town consult I took 2 days from working out and also a lazy day last week. Therefore, I missed 3 days of working out last week!!!! Yesterday we took the dogs on a brisk walk and then it was too late to go to the gym. Today I have to get back on track and play catch up (weights and aerobic/cardiovascular exercise). Therefore I need to get going here and will have to explain things further later.
Have a great week! :o)
Sorry to keep you waiting.
We were in Portland last weekend as we had a 3rd appointment (consultation) at the Oregon Health and Science University. It went well. We were actually there a long time. I have a very complicated case. I guess I am just complex and complicated in general. (chuckle)
Upon returning from my family visit the end of July/beginning of August I immediately had consultation appointment #2 at the University of Washington. That one was kind of hairy. Neither Harley or I felt comfortable. We did learn lots of information (things I actually missed as the appointment flowed too fast) and I was fortunately able to review once recieving the captioning notes.
I have yet to go through the notes from Friday. Interestingly, without even giving the doctor in Portland the questions beforehand, he nailed just about a whole page of my questions before I even asked anything! We were really impressed.
So to refresh at this point:
5 opinions from neurosurgeons have been collected
2 surgeons from CA, 2 from Seattle, and 1 from Oregon
Of course there is not a cure so the goal is to address the largest tumor pressing on the brainstem. The idea is to attempt to do the least harm as possible with the hope that I can be restored to my present state.
Even though it is tough and I am doing the best since my last treatment in 2004, surgery is still emminent at this point as I am in a position of walking a tight rope. I have been told it is amazing and miraculous that I have walked a full marathon or am even walking. The idea is to go in as strong as possible so I have a good shot at recovery.
There are other tumors to address and future treatments/surgeries but at this point we are focusing on this big boy that has to be reduced no matter what if I am to have a chance at maintaining where I am and even living.
Oh, and yes there is another big tumor (meningioma) which was one of the tumors to be considered for treatment at the time of radiosurgery. Things did not go according to plan so it was never treated. Therefore, that tumor can be taken out at the same time. It is called a "kissing meningioma" as it is "kissing" or touching the "big boy" vestibular schwannoma which will be debulked.
To eliminate confusion I will paraphrase:
Note: the MRI image is flipped around. The tumors I am having surgery for are on the right side of my head. In the picture however, they are shown on the left side.
The large tumor you see on the film I posted under the title "Want to see my brain?" will be debulked. What that means is that the surgeon will go in and remove what he can without severing the nerves that some of the tumor will be adhered to and without peeling away tumor which has adhered to the brainstem.
So if you are following me, that means part of the tumor will be left behind. It is pretty impossible to remove it fully as these types of tumors like to stick to vital structures and they have a very high chance of growing back.
So yeah, at some point it will most likely regrow (hopefully not too soon and hopefully by then there will be a cure or some less invasive and more viable form of treatment).
The meningioma on the other hand will be removed entirely. Meningiomas are tumors that grow in the lining of the brain and not in the brain matter itself. Think of it as a piece of syran wrap on a hunk of cheese. The tumor is in the syran wrap and not in the cheese.
Alrighty. With the out of town consult I took 2 days from working out and also a lazy day last week. Therefore, I missed 3 days of working out last week!!!! Yesterday we took the dogs on a brisk walk and then it was too late to go to the gym. Today I have to get back on track and play catch up (weights and aerobic/cardiovascular exercise). Therefore I need to get going here and will have to explain things further later.
Have a great week! :o)
Tuesday, July 24, 2007
And Behind Door #3 We Have...........?
First let me start by telling you that we are going to play "Pop your balloon and then fill your bucket". LOL Seriously it is a technique I learned in my young college/leadership days while serving as a resident adviser in housing and residence life at Northern Michigan University. We practiced it in learning how to give and accept constructive criticism and feedback for self and team improvement. I am going to use it on you to lay out the facts/updates which one may find disturbing at times but then I will also share with you something that may lift you up.
Behind the mystery doors........synopsis of the 3 opinions so far
3 neurosurgeons have been asked for their opinion. The first in May, the second at the beginning of July, and the third yesterday. Two are from prestigious centers in California and one from a top center here.
Surgeon 1: (words via email)
There is certainly significant narrowing of the brainstem, but the distance between the two ANs differs from slice to slice on the various MRI scans. While the tumors could be "unchanged" in size, this really means that there has been no significant measurable change in the tumors of more than 1 to 2 mm, since this is within the range of measuring error. Thus a tumor that is 1mm larger may be called "unchanged", but could be impinging more on the brainstem. I agree that you should be concerned about brainstem compression, and if you did become sympotmatic, then you would likely require debulking of the left acoustic neuroma. We could do radiosurgery on the left AN, but if it did swell and you became symptomatic, then you would require surgery for the left AN.
The main symptoms would be weakness or numbness in the arms or legs or face, balance problems, or potentially some speech and swallowing difficulty. If that occurs either from tumor growth or swelling after radiosurgery, then surgery would be required.
You could do surgery for a debulking followed by radiosurgery for the resiudal tumor, and that is my preferences in NF2 patients such as yourself. The hope of the debulking as opposed to a complete resection would be that a debulking followed by radiosurgery would have a better chance, in my opinion, of preserving facial function.
As far as timing, the obvious choices would be to
1) wait until the tumor caused symptoms, and then treat,
or
2) treat now before symptoms would occur.
Number 2 may be lower risk since it is often easier to operate before the symptoms are severe, but there is a risk that the surgery would cause problems that would not otherwise occur for several years if we chose to observe the tumor instead. There is no perfect answer, and I would be willing to go either way based upon your decision.
Surgeon #2: (my synopsis based on the captioned dialogue in the appointment)
Yes. I should not fool myself into thinking I can escape surgery and the present situation. Surgery should be done at a convenient time but not wait until next year or the winter (2008). He agreed that the fall (October or November) would be a good time.
His proposition is to do a "debulking" of the tumor. This means removing only a portion and not the whole thing. His plan is to remove the supposedly "dead" necrotic center (hollow it out) and to stay away from the nerves and brainstem. In addition, he would remove the meningiomas (different tumors next to the big one) and part of the cerebellum to allow the brainstem more room so it is not as compressed (keep in mind that the tumor on the left is still there and there would be some of the right tumor remaining).
His approach he feels is less aggressive where (although not a guarantee) it is safer in regards to preserving the functions I have with facial, vestibular, and the brainstem. The surgery would be 3-4 hours.
At a later date, I could consider radiosurgery on the left tumor as there would be more room to allow any possible swelling of the left tumor after treatment. Or I could get surgery on the left tumor when it became necessary.
Surgeon #3: (spoke to Harley on the phone and the following is what Harley related to me)
The surgeon looked at my MRI and asked Harley if I had any sort of vision problems. Harley told him I had and the surgeon inquired further. I have had optic nerve swelling which was diagnosed in February 2005. I discovered in the reports that we received in the mail on Monday that the ophthalmalogist documented this condition as Papilledema (although I was never told that by him) and I have been prescribed and taking a medication known as Diamox since that time to keep this swelling at bay.
The surgeon told Harley that if I do not get surgery soon, I am in danger of going blind or dying. Lovely news, eh?
I was very upset. I think the blind part is what really upset me and created a new panic or fear (or at least deeply ripped open an old wound).
This surgeon's recommendation is to not address the tumor on the left but to address the tumor on the right as surgeon #2 proposed. However, surgeon #3 feels the tumor on the right (the larger one) should have a "COMPLETE REMOVAL" instead of a debulking. This would mean scraping (peeling) the tumor off the facial and vestibular nerve and the brainstem. I am not comfortable with this plan.
The reason for this is that the surgeon feels the tumor will grow back within 4 years and I would have to get surgery again. Although I have referred to this tumor as "dead" or "dying" really we don't know that. We are just basing it on the fact that it was the goal with the first treatment, it has stopped growing and has been stable for 2 years, it is showing signs of cell death on the MRI from the very center, and I have made many improvements and not been having the symptoms I had the first year when I could not function off of steroids.
The surgery would take 6-7 hours from what I understand.
Ok. Now I have to fill the bucket.
Truthfully I do not have much time to write all the glorious things I have experienced, been thinking about, and wanted to share with you. So I will just tell you a few quick ones. Perhaps when I leave out of town to visit family on Thursday I will be able to write out some of this to type later if the ride is not too bumpy. ;o)
Good news: I am really fit and have continued to make remarkable improvements!
As some of you may recall, I took a bad fall in the driveway last April and sprained my ankle. It has almost healed now so I have been able to commence running and water aerobics. In fact I went to water aerobics just yesterday and thoroughly enjoyed it! It is a great sensation for me because I can do moves in the water that I would not be able to on land! Also, I really like the water and it is comfortable to be able to do this in clear water not over my head. If I am swimming I have to wear a mask because without touching bottom and if my eyes are closed, I get the disoriented feeling of vertigo.
I restarted running in the end of June. I actually ran the furthest I have run for the year and quite possibly since before treatment! (I am not sure as I went on a long run in March 2006 but succumbed to a horrible migrane as the optic nerve swelling returned when we tried a taper. I can't remember exactly how far I ran back then as the headache won over my memory of distance). However, little Katie had a hard time after that run as she had surgery in 2005. Her leg was sore so I had to give her a few days off and then it got too hot to take the dogs running. Therefore I took a break from running due to the hot weather but have since gone for another run last week.
The BIG NEWS..........my hard work, endurance training for the marathon last fall, weight lifting this year, and training on the BOSE ball balance device has paid off! Harley and I celebrated our 7th anniversary on July 16th by doing something I would have thought ordinary years ago but was really special to me now. I really wanted to know if I could hike my old stomping ground Tiger Mountain. It is the closest mountain/elevation hike to the Seattle area.
I did it! It was not that hard either and I was not that sore afterward (just a little the day after). In fact I hiked up with no poles and then used the poles on the way back down. At the top it was steep with loose gravel so it was really challenging for the small part of that going down even with poles. I had worn the tread off of my Keens already so Harley had to hold on to the hydropack on my back for the section going down.
My good friend Yumi (who I actually met years ago on top of Tiger Mountain) took me to Rattlesnake Ledge hiking trail last Saturday and it was fantastic! I had never been on it and it is now my favorite closest mountain hiking trail! The Pacific NW woodland on the way up is so magical and enchanting and the view at the top is phenomenal!!!! It totally surpasses the views from Tiger (before the trees grew at the top!!), Little Si, and Big Si all put together.
One can see the big guy from a perspective directly across (4000 foot Mt. Si which has been one of my favorite challenging hikes over the years). I still do want to do Big Si again (hoping I can fit it in before this surgery). I have not been on that mountain since spring/summer 2003.
Since I am talking about hiking and my friend Yumi, I again want to congratulate her and share the good news of her recent feat and accomplishment with you. On the weekend of July 6th-7th, Yumi conquered our highest peak and glory Mt. Rainier. Yay!!!! Woohoo! Way to Go! She has been seriously training for 2 years now and her hard work has paid off. She has some great photos so if we ask really nice maybe she will share her link with us for posting on here.
My consultation with neurosurgeon #4 will be on Monday August 6th. So until then, have a happy remaining July and happy summer!
- Beck :o)
Behind the mystery doors........synopsis of the 3 opinions so far
3 neurosurgeons have been asked for their opinion. The first in May, the second at the beginning of July, and the third yesterday. Two are from prestigious centers in California and one from a top center here.
Surgeon 1: (words via email)
There is certainly significant narrowing of the brainstem, but the distance between the two ANs differs from slice to slice on the various MRI scans. While the tumors could be "unchanged" in size, this really means that there has been no significant measurable change in the tumors of more than 1 to 2 mm, since this is within the range of measuring error. Thus a tumor that is 1mm larger may be called "unchanged", but could be impinging more on the brainstem. I agree that you should be concerned about brainstem compression, and if you did become sympotmatic, then you would likely require debulking of the left acoustic neuroma. We could do radiosurgery on the left AN, but if it did swell and you became symptomatic, then you would require surgery for the left AN.
The main symptoms would be weakness or numbness in the arms or legs or face, balance problems, or potentially some speech and swallowing difficulty. If that occurs either from tumor growth or swelling after radiosurgery, then surgery would be required.
You could do surgery for a debulking followed by radiosurgery for the resiudal tumor, and that is my preferences in NF2 patients such as yourself. The hope of the debulking as opposed to a complete resection would be that a debulking followed by radiosurgery would have a better chance, in my opinion, of preserving facial function.
As far as timing, the obvious choices would be to
1) wait until the tumor caused symptoms, and then treat,
or
2) treat now before symptoms would occur.
Number 2 may be lower risk since it is often easier to operate before the symptoms are severe, but there is a risk that the surgery would cause problems that would not otherwise occur for several years if we chose to observe the tumor instead. There is no perfect answer, and I would be willing to go either way based upon your decision.
Surgeon #2: (my synopsis based on the captioned dialogue in the appointment)
Yes. I should not fool myself into thinking I can escape surgery and the present situation. Surgery should be done at a convenient time but not wait until next year or the winter (2008). He agreed that the fall (October or November) would be a good time.
His proposition is to do a "debulking" of the tumor. This means removing only a portion and not the whole thing. His plan is to remove the supposedly "dead" necrotic center (hollow it out) and to stay away from the nerves and brainstem. In addition, he would remove the meningiomas (different tumors next to the big one) and part of the cerebellum to allow the brainstem more room so it is not as compressed (keep in mind that the tumor on the left is still there and there would be some of the right tumor remaining).
His approach he feels is less aggressive where (although not a guarantee) it is safer in regards to preserving the functions I have with facial, vestibular, and the brainstem. The surgery would be 3-4 hours.
At a later date, I could consider radiosurgery on the left tumor as there would be more room to allow any possible swelling of the left tumor after treatment. Or I could get surgery on the left tumor when it became necessary.
Surgeon #3: (spoke to Harley on the phone and the following is what Harley related to me)
The surgeon looked at my MRI and asked Harley if I had any sort of vision problems. Harley told him I had and the surgeon inquired further. I have had optic nerve swelling which was diagnosed in February 2005. I discovered in the reports that we received in the mail on Monday that the ophthalmalogist documented this condition as Papilledema (although I was never told that by him) and I have been prescribed and taking a medication known as Diamox since that time to keep this swelling at bay.
The surgeon told Harley that if I do not get surgery soon, I am in danger of going blind or dying. Lovely news, eh?
I was very upset. I think the blind part is what really upset me and created a new panic or fear (or at least deeply ripped open an old wound).
This surgeon's recommendation is to not address the tumor on the left but to address the tumor on the right as surgeon #2 proposed. However, surgeon #3 feels the tumor on the right (the larger one) should have a "COMPLETE REMOVAL" instead of a debulking. This would mean scraping (peeling) the tumor off the facial and vestibular nerve and the brainstem. I am not comfortable with this plan.
The reason for this is that the surgeon feels the tumor will grow back within 4 years and I would have to get surgery again. Although I have referred to this tumor as "dead" or "dying" really we don't know that. We are just basing it on the fact that it was the goal with the first treatment, it has stopped growing and has been stable for 2 years, it is showing signs of cell death on the MRI from the very center, and I have made many improvements and not been having the symptoms I had the first year when I could not function off of steroids.
The surgery would take 6-7 hours from what I understand.
Ok. Now I have to fill the bucket.
Truthfully I do not have much time to write all the glorious things I have experienced, been thinking about, and wanted to share with you. So I will just tell you a few quick ones. Perhaps when I leave out of town to visit family on Thursday I will be able to write out some of this to type later if the ride is not too bumpy. ;o)
Good news: I am really fit and have continued to make remarkable improvements!
As some of you may recall, I took a bad fall in the driveway last April and sprained my ankle. It has almost healed now so I have been able to commence running and water aerobics. In fact I went to water aerobics just yesterday and thoroughly enjoyed it! It is a great sensation for me because I can do moves in the water that I would not be able to on land! Also, I really like the water and it is comfortable to be able to do this in clear water not over my head. If I am swimming I have to wear a mask because without touching bottom and if my eyes are closed, I get the disoriented feeling of vertigo.
I restarted running in the end of June. I actually ran the furthest I have run for the year and quite possibly since before treatment! (I am not sure as I went on a long run in March 2006 but succumbed to a horrible migrane as the optic nerve swelling returned when we tried a taper. I can't remember exactly how far I ran back then as the headache won over my memory of distance). However, little Katie had a hard time after that run as she had surgery in 2005. Her leg was sore so I had to give her a few days off and then it got too hot to take the dogs running. Therefore I took a break from running due to the hot weather but have since gone for another run last week.
The BIG NEWS..........my hard work, endurance training for the marathon last fall, weight lifting this year, and training on the BOSE ball balance device has paid off! Harley and I celebrated our 7th anniversary on July 16th by doing something I would have thought ordinary years ago but was really special to me now. I really wanted to know if I could hike my old stomping ground Tiger Mountain. It is the closest mountain/elevation hike to the Seattle area.
I did it! It was not that hard either and I was not that sore afterward (just a little the day after). In fact I hiked up with no poles and then used the poles on the way back down. At the top it was steep with loose gravel so it was really challenging for the small part of that going down even with poles. I had worn the tread off of my Keens already so Harley had to hold on to the hydropack on my back for the section going down.
My good friend Yumi (who I actually met years ago on top of Tiger Mountain) took me to Rattlesnake Ledge hiking trail last Saturday and it was fantastic! I had never been on it and it is now my favorite closest mountain hiking trail! The Pacific NW woodland on the way up is so magical and enchanting and the view at the top is phenomenal!!!! It totally surpasses the views from Tiger (before the trees grew at the top!!), Little Si, and Big Si all put together.
One can see the big guy from a perspective directly across (4000 foot Mt. Si which has been one of my favorite challenging hikes over the years). I still do want to do Big Si again (hoping I can fit it in before this surgery). I have not been on that mountain since spring/summer 2003.
Since I am talking about hiking and my friend Yumi, I again want to congratulate her and share the good news of her recent feat and accomplishment with you. On the weekend of July 6th-7th, Yumi conquered our highest peak and glory Mt. Rainier. Yay!!!! Woohoo! Way to Go! She has been seriously training for 2 years now and her hard work has paid off. She has some great photos so if we ask really nice maybe she will share her link with us for posting on here.
My consultation with neurosurgeon #4 will be on Monday August 6th. So until then, have a happy remaining July and happy summer!
- Beck :o)
Thursday, July 12, 2007
Want to see my brain?
I am going to forget who I am sending what to. So to make it easier, I am going to try posting the updates here. I promised you all many months ago (or is it over a year now?) that I was going to post a picture of my MRI. This a slice of the latest scan from April 2007. I had not been brave enough to look at the cd for over a year. This image was made possible by Harley who loaded it onto the computer for me.
As you can see (all the white are tumors), I am in a tight spot (or a pickle). That thin dark spot squished between the two white blobs is my brainstem. So there REALLY is NOT room for any more growth. Therefore brain surgery is in the forecast within a few months (the fall....probably October).
I am getting confused looking at the image now as the tumor on the right is the one I had treated and should be the larger one with the dark center. Whoa! Is my mind tripping or did the image somehow get flipped around wrong?
Anyhow, the latest proposed plan of action is to scoop out the black center of the one that was treated with radiosurgery (which is the larger tumor). The reason only part of it will be removed (referred to as a debulking procedure) is that -
a) the tumor has been stable and showing necrosis (cell death) for a couple years now. Therefore, hopefully it really is dead and we do not have to worry about a regrowth from tumor cells left behind.
AND
b) trying to peel the tumor away from the nerves (facial and balance) and brainstem can result in permanent damage to those structures and their function which is what we want to try to avoid.
Oh yeah, and it has been proposed to also pluck out the other tumors (smaller white blobs) on the same side that are touching the big fella. Those are a different kind of tumor called "meningiomas" which should be in the lining of the brain and not in the brain tissue itself. To access all this, a small chunk of my cerebellum may be cut out.
Seriously though, I experience many good things and natural "wonders". After the appointment Monday we went to one of my favorite places in Seattle (the Volunteer Park Conservatory) and I was tickled by tantilizing visual wonder! I was in such awe over the colors, shapes, patterns, and textures of all the plants and flowers there. I felt as if I were in a fantasy dream!
I have many more of these type of experiences but I just have not had a chance to write and post about them. I am busy researching, preparing, and taking this all in.
On a positive note I am in really good shape/health. Heck if I did not have this dang NF2 maybe I could train and climb Mt. Rainier! Alas my balance will not allow me to do so but given the picture above, the doctors are pretty amazed that I walked a dang marathon and climbed the city's tallest skyscraper!
My focus starting in 2007 has been to work on my balance and regaining my muscle. My plan really has been to prepare to return to scuba diving and also to become more of an avid runner. Well the diving is going to have to be on hold again but at least I have been heading in the right direction. I will not be able to lift weights and do strenous things until the surgical area heals. Thus I am trying to do all that now in preparation for the recovery phase.
Honestly it cannot be predicted with guarantee what will happen as far as complications and side effects. Everyone and every situation with NF2 and these tumors are different. I really only expected to go deaf after radiosurgery and did not imagine I would not ride a motorcycle anymore, not rollerblade anymore, not hike like I used to, not jump into a lake or pool with my eyes closed, hold off diving for now 3 years, drink out of a straw for a year, have half my face freeze up, have visual problems, and yada yada.
Anyhow, with any sort of illness and surgery it is always a better recovery and outcome if one is healthy and fit. It makes sense! So this is my strategy and what I am working on in 2007.
Feel free to ask me any questions! :o)
As you can see (all the white are tumors), I am in a tight spot (or a pickle). That thin dark spot squished between the two white blobs is my brainstem. So there REALLY is NOT room for any more growth. Therefore brain surgery is in the forecast within a few months (the fall....probably October).
I am getting confused looking at the image now as the tumor on the right is the one I had treated and should be the larger one with the dark center. Whoa! Is my mind tripping or did the image somehow get flipped around wrong?
Anyhow, the latest proposed plan of action is to scoop out the black center of the one that was treated with radiosurgery (which is the larger tumor). The reason only part of it will be removed (referred to as a debulking procedure) is that -
a) the tumor has been stable and showing necrosis (cell death) for a couple years now. Therefore, hopefully it really is dead and we do not have to worry about a regrowth from tumor cells left behind.
AND
b) trying to peel the tumor away from the nerves (facial and balance) and brainstem can result in permanent damage to those structures and their function which is what we want to try to avoid.
Oh yeah, and it has been proposed to also pluck out the other tumors (smaller white blobs) on the same side that are touching the big fella. Those are a different kind of tumor called "meningiomas" which should be in the lining of the brain and not in the brain tissue itself. To access all this, a small chunk of my cerebellum may be cut out.
Seriously though, I experience many good things and natural "wonders". After the appointment Monday we went to one of my favorite places in Seattle (the Volunteer Park Conservatory) and I was tickled by tantilizing visual wonder! I was in such awe over the colors, shapes, patterns, and textures of all the plants and flowers there. I felt as if I were in a fantasy dream!I have many more of these type of experiences but I just have not had a chance to write and post about them. I am busy researching, preparing, and taking this all in.
On a positive note I am in really good shape/health. Heck if I did not have this dang NF2 maybe I could train and climb Mt. Rainier! Alas my balance will not allow me to do so but given the picture above, the doctors are pretty amazed that I walked a dang marathon and climbed the city's tallest skyscraper!
My focus starting in 2007 has been to work on my balance and regaining my muscle. My plan really has been to prepare to return to scuba diving and also to become more of an avid runner. Well the diving is going to have to be on hold again but at least I have been heading in the right direction. I will not be able to lift weights and do strenous things until the surgical area heals. Thus I am trying to do all that now in preparation for the recovery phase.
Honestly it cannot be predicted with guarantee what will happen as far as complications and side effects. Everyone and every situation with NF2 and these tumors are different. I really only expected to go deaf after radiosurgery and did not imagine I would not ride a motorcycle anymore, not rollerblade anymore, not hike like I used to, not jump into a lake or pool with my eyes closed, hold off diving for now 3 years, drink out of a straw for a year, have half my face freeze up, have visual problems, and yada yada.
Anyhow, with any sort of illness and surgery it is always a better recovery and outcome if one is healthy and fit. It makes sense! So this is my strategy and what I am working on in 2007.
Feel free to ask me any questions! :o)
Wednesday, June 27, 2007
New Life
Photo taken by Harley Dufek in Labadee, Haiti June 26th, 2006.Last June (the 26th to be exact) is the first time I stepped into the ocean waters since boogie boarding after my first brain radiosurgery treatment in July 2004. Prior, my last dive (scuba) was at Titlow Beach in Puget Sound (Washington) in March of 2004 just days before it was discovered that one of my tumors grew substantially and was in immediate need of treatment.
From the treatment I developed a vertigo in the water which prevented me from the water activities I used to love. Fortunately, I was able to overcome these challenges and enjoy my love of the sea snorkeling on a vacation last year.
It was absolutely MARVELOUS! I had so longed to back in the sea with the fish and marine life (in my element). The clear water, colorful fish, coves, and reef life were stunning. We had fun poking our heads into little nooks and crannies to see what surprise awaited us.
When we rounded a rock outcropping we came upon an interesting site which I have known about for a long time but have never witnessed. Sitting peacefully in the water were two large round cement structures with portholes covering the body of the spheres.
I became extremely excited of my find and swam around to inspect the new life growing on the structures which had probably not been laid there long (maybe only a year or two or even months old). It was interesting to see how a faint light blue and yellow fish with black stripes took on the duty of guardian of these great spheres. It was protector of all within the sphere and the new life growing on it. The sphere had become its "artifical reef" and home now.
I was so pleasantly pleased to witness this spectacular site and the new life emergining. It made me giddy and happy inside but also curious of how the spheres came to be and what was the story behind them.
You may also be wondering what these spheres were. They are actually part of an eternal reef memorial. I have know about them since I was in college (shortly after I became a certified scuba diver at age 19). In leu of a plot burial, a jar of ashes, or ashes scattered in the wind, one can decide to continue on with life and become part of a "reef". Hence "old life" gives birth to "new life" and the cycle continues on.
In fascination and awe, my mind weaved tales of their being. There were only two spheres. Were the spheres of an older couple who had once honeymooned there together? How romantic. It is unsual for eternal reefs to be placed alone in international waters. This particular part of Haiti is owned by an American Cruise Line which is private and only for cruise guests. Thus I wondered if this was a magical and memorable place for these two people where they wanted to be laid to rest and become something bigger (part of the whole).
Eternal Reefs: http://eternalreefs.com/
Atlantis Memorial Reef Project: http://www.atlantismemorialreef.com/project.htm
The nightmare
When I was a girl, I would sometimes have bad dreams so intense that it would take every bit of energy I could muster to reach over and turn on the light to escape the terror and pull myself out of dreaming and back into reality.
Well I have not experienced that physically draining of a bad dream since then that I can recall. However, the dream last night did not necessarily pull me into the reality I was expecting and upon waking I had a scary experience.
Here is the dream: I don't know much about it but I recall other people were living in our house or we were living in a house with other people. It was weird. We were living there because we were alike and had some kind of connection. Were we all brain tumor patients? I honestly don't know.
Somehow, somewhere I met someone who wanted to be a part of our group but the person had to escape from the people who were holding him. I cannot give you details because I can't remember. It was a strange situation. I agreed to allow this person into our group (to live at our house/compound/whatever it was). The person was to arrive that evening when it was safe to escape.
The evening came and I had told the others that this person was going to join us. I think they were leary and unsure about my decision. To my dismay, the person betrayed us. When time came for him to arrive, our house was under attack by a militia with guns!
I knew everyone would be upset with me. Harley was with me but sleeping through everything. Although I am deaf I could hear in the dream and know what was going on. I became very stressed and felt the pressure I experienced when having a nightmare when I was young. In my dream I pulled the covers over my head to hide and did not want to come out. It became so overwhelming to me I could not stand it and could not hide from my fear!
Then somehow with the desire to want to escape, I hoped it was a bad dream during an unconscious state and if I came out from the covers it would be over. Therefore, I mustered the courage to open my eyes and realized I was home in my own bed and room.
But it was not over. The pressure in my head did not stop. I was utterly terrified!
Did one of the tumors grow pinching my brain stem? Oh God the horror! I sat up hoping it would go away. I felt no pain but just this intense pressure that I am unsure how to describe at this moment. I rocked back and forth to comfort myself hoping that it would disipate. No do! Therefore, I decided I would take something to reduce swelling which may have been the cause of my current problem. The diamox was sitting on my dresser (medication I take daily) but I did not want to put my dosage out of wack on a prescribed medicine. The next best thing would be IB Profen.
I made my way downstairs with the pressure still knawing at my brain. Ok this is a good sign I thought as I was able to make my way out of bed without stumbling or falling. I continued down the stairs with no falls and no pain which provided me some sense of ease. I made my way to the kitchen and took 2 IB Profen and then headed to the couch to lie down and relax.
For a moment I wanted to get upset and cry internally but I reconsidered realizing that any further stress would increase the pressure or not help the situation. I focused on relaxed breathing and pictured my friend Laura in my mind of how she calmed me 2 years ago when I got upset at the beach. (Incidentally, from the moment on, I often picture her showing me to breath deeply whenever I get upset.)
Above the TV is a framed poster of the coast of Italy. It is very serene and peaceful. I focused on being in the beautiful and peacefull setting and my friend guiding me through relaxed and deep breathing. Within a few minutes it ended and I was able to go back to sleep. Phew!
Well I have not experienced that physically draining of a bad dream since then that I can recall. However, the dream last night did not necessarily pull me into the reality I was expecting and upon waking I had a scary experience.
Here is the dream: I don't know much about it but I recall other people were living in our house or we were living in a house with other people. It was weird. We were living there because we were alike and had some kind of connection. Were we all brain tumor patients? I honestly don't know.
Somehow, somewhere I met someone who wanted to be a part of our group but the person had to escape from the people who were holding him. I cannot give you details because I can't remember. It was a strange situation. I agreed to allow this person into our group (to live at our house/compound/whatever it was). The person was to arrive that evening when it was safe to escape.
The evening came and I had told the others that this person was going to join us. I think they were leary and unsure about my decision. To my dismay, the person betrayed us. When time came for him to arrive, our house was under attack by a militia with guns!
I knew everyone would be upset with me. Harley was with me but sleeping through everything. Although I am deaf I could hear in the dream and know what was going on. I became very stressed and felt the pressure I experienced when having a nightmare when I was young. In my dream I pulled the covers over my head to hide and did not want to come out. It became so overwhelming to me I could not stand it and could not hide from my fear!
Then somehow with the desire to want to escape, I hoped it was a bad dream during an unconscious state and if I came out from the covers it would be over. Therefore, I mustered the courage to open my eyes and realized I was home in my own bed and room.
But it was not over. The pressure in my head did not stop. I was utterly terrified!
Did one of the tumors grow pinching my brain stem? Oh God the horror! I sat up hoping it would go away. I felt no pain but just this intense pressure that I am unsure how to describe at this moment. I rocked back and forth to comfort myself hoping that it would disipate. No do! Therefore, I decided I would take something to reduce swelling which may have been the cause of my current problem. The diamox was sitting on my dresser (medication I take daily) but I did not want to put my dosage out of wack on a prescribed medicine. The next best thing would be IB Profen.
I made my way downstairs with the pressure still knawing at my brain. Ok this is a good sign I thought as I was able to make my way out of bed without stumbling or falling. I continued down the stairs with no falls and no pain which provided me some sense of ease. I made my way to the kitchen and took 2 IB Profen and then headed to the couch to lie down and relax.
For a moment I wanted to get upset and cry internally but I reconsidered realizing that any further stress would increase the pressure or not help the situation. I focused on relaxed breathing and pictured my friend Laura in my mind of how she calmed me 2 years ago when I got upset at the beach. (Incidentally, from the moment on, I often picture her showing me to breath deeply whenever I get upset.)
Above the TV is a framed poster of the coast of Italy. It is very serene and peaceful. I focused on being in the beautiful and peacefull setting and my friend guiding me through relaxed and deep breathing. Within a few minutes it ended and I was able to go back to sleep. Phew!
Tuesday, June 26, 2007
Watch ESPN tonight June 26th!
HI!
Below is an email from Neurofibromatosis Inc. Northeast about an NF2 patient who was recently granted a wish from the "Make a Wish" foundation. ESPN will air a program where NF2 child Stephan meets with his hero David Ortiz.
I don't have cable tv but would LOVE to see the program. Please watch it and tell me about it! :o)
P.S.- to learn more about Neurofibromatosis, please visit the website (lighthouse icon in the post title) for the NF Inc. Northeast chapter.
Here are the highlights of their meeting:
Stephan Zepeda-LeColst – David Ortiz's Fenway Park Guest
Age – 12; Hometown – Middleton, Mass.; Condition – neurofibromatosis, type 2
Wish: To meet David Ortiz
Stephan, who had his own locker in the Red Sox clubhouse, met Ortiz for a personal tour of Fenway’s ‘Green Monster’
Age – 12; Hometown – Middleton, Mass.; Condition – neurofibromatosis, type 2
Wish: To meet David Ortiz
Stephan, who had his own locker in the Red Sox clubhouse, met Ortiz for a personal tour of Fenway’s ‘Green Monster’
Email from NF INC Northeast:
Hello everyone,
One of our young NF2 patients Stephan Zepeda LeColst (age 11), was recently a Make a Wish child. His wish was to visit with David Ortiz who has been his hero since he was 3 years old because David is big and strong.
They met last week and ESPN will air a program about their visit on Tuesday 6/26. ESPN Sportscenter airs from 6-7pm ET each night, and then again from 11pm-12am and 1am-2am. It then reruns again six times the next morning. ESPN has also written an article about them which I have attached. (sorry, I could not get the attachment and include it here)
A humorous story about Stephan - the day before they were scheduled to meet, David Ortiz called him at his home in Middleton to introduce himself. Stephan (who has hearing loss) thought it was his neighbor playing a joke on him and hung up the phone. Big Papi thought it was very funny, and called back! As you will read in the article, they had a great day.
Karen Peluso, Executive DirectorNeurofibromatosis, Inc., Northeast*9 Bedford StreetBurlington, MA 01803781-272-9936
fax 781-272-9937cell 617-529-9562http://www.nfincne.org/* A Member of the National NF Coalition
One of our young NF2 patients Stephan Zepeda LeColst (age 11), was recently a Make a Wish child. His wish was to visit with David Ortiz who has been his hero since he was 3 years old because David is big and strong.
They met last week and ESPN will air a program about their visit on Tuesday 6/26. ESPN Sportscenter airs from 6-7pm ET each night, and then again from 11pm-12am and 1am-2am. It then reruns again six times the next morning. ESPN has also written an article about them which I have attached. (sorry, I could not get the attachment and include it here)
A humorous story about Stephan - the day before they were scheduled to meet, David Ortiz called him at his home in Middleton to introduce himself. Stephan (who has hearing loss) thought it was his neighbor playing a joke on him and hung up the phone. Big Papi thought it was very funny, and called back! As you will read in the article, they had a great day.
Karen Peluso, Executive DirectorNeurofibromatosis, Inc., Northeast*9 Bedford StreetBurlington, MA 01803781-272-9936
fax 781-272-9937cell 617-529-9562http://www.nfincne.org/* A Member of the National NF Coalition
Saturday, June 23, 2007
What relaxes and calms me?
A: Being out among nature and watching underwater film footage such as the Blue Planet.
(Busy busy here so not much time to write.)
I love any outdoor body of water: pond, lake, ocean, quary, creek, stream, river, waterfall. I am fascinated by the movement of water.
When in Belize on our honeymoon (2000), we met another diver who was actually a hypnotist. He would use nature videography to calm and hypnotize people (for theraputic medical purposes). At the time I was dabbling in some very amateur underwater videography and Harley was starting his underwater photography career. We thought it would be a great idea to use underwater videography for relaxation! Even the surface above water has always had a calming hypnotic effect on me.
I remember the days when I could avidly water ski. Salom skiing was my favorite. I was entranced by leaning over and gleaning at the water. The fast pace of movement and percision made me imagine of being a powerful shark cutting through the liquid glass at high speed. I was also drawn by the foaming and bubbling of the water behind the boat's motor. It was glorious and dazzling in the sun!
I have not water skiied or dove (scuba) since before the radiosurgery. The treatment left me without the incredible sense of balance I once had. In fact, without my eyes open or a mask while in the water I get very disoriented and cannot tell which way is the surface (vertigo). However, I am still hynotically drawn to the water. It calls to me. Whenever I see it I long to jump in or at least touch it.
Last night when walking the dogs at Marymoor dog park, I decided to walk them to Lake Sammamish after one lap around the park. When we arove a sense of nostalgia and peace overtook my being. It completed the day by providing a satisfying reward by just seeing it. A herring flew above in the pink and lavendar lined clouds of the setting sun while the lake water gently weaved underneath the beautiful lilypads and white blossoms. In the distance we could see the reflection of the setting sun shedding a pinkish hue on Sauk mountain and a lone outboard boat with two fisherman lazily relaxing in hopes of an evening catch. It was so incredible that I did not want to leave but time had to pull us away as I had to get to get in some weight lifting at the gym before it closed.
Today I felt a little panicky thinking about the approaching date of my medical consultation and the thought entered my mind about maybe needing to cut off my hair for a surgery. Thank God I have a nice series of underwater videos that I can retreat to. I popped in the Blue Planet DVD "Seasonal Seas and Coral Seas" and immediately the microscopic Copepod environment enthralled me in interest and the gracefully swimming jellyfish put my mind at rest.
Now I can get on with the day.
(Busy busy here so not much time to write.)
I love any outdoor body of water: pond, lake, ocean, quary, creek, stream, river, waterfall. I am fascinated by the movement of water.
When in Belize on our honeymoon (2000), we met another diver who was actually a hypnotist. He would use nature videography to calm and hypnotize people (for theraputic medical purposes). At the time I was dabbling in some very amateur underwater videography and Harley was starting his underwater photography career. We thought it would be a great idea to use underwater videography for relaxation! Even the surface above water has always had a calming hypnotic effect on me.
I remember the days when I could avidly water ski. Salom skiing was my favorite. I was entranced by leaning over and gleaning at the water. The fast pace of movement and percision made me imagine of being a powerful shark cutting through the liquid glass at high speed. I was also drawn by the foaming and bubbling of the water behind the boat's motor. It was glorious and dazzling in the sun!
I have not water skiied or dove (scuba) since before the radiosurgery. The treatment left me without the incredible sense of balance I once had. In fact, without my eyes open or a mask while in the water I get very disoriented and cannot tell which way is the surface (vertigo). However, I am still hynotically drawn to the water. It calls to me. Whenever I see it I long to jump in or at least touch it.
Last night when walking the dogs at Marymoor dog park, I decided to walk them to Lake Sammamish after one lap around the park. When we arove a sense of nostalgia and peace overtook my being. It completed the day by providing a satisfying reward by just seeing it. A herring flew above in the pink and lavendar lined clouds of the setting sun while the lake water gently weaved underneath the beautiful lilypads and white blossoms. In the distance we could see the reflection of the setting sun shedding a pinkish hue on Sauk mountain and a lone outboard boat with two fisherman lazily relaxing in hopes of an evening catch. It was so incredible that I did not want to leave but time had to pull us away as I had to get to get in some weight lifting at the gym before it closed.
Today I felt a little panicky thinking about the approaching date of my medical consultation and the thought entered my mind about maybe needing to cut off my hair for a surgery. Thank God I have a nice series of underwater videos that I can retreat to. I popped in the Blue Planet DVD "Seasonal Seas and Coral Seas" and immediately the microscopic Copepod environment enthralled me in interest and the gracefully swimming jellyfish put my mind at rest.
Now I can get on with the day.
Monday, June 11, 2007
Clinical Trial Study on Curcumin at MD Anderson
pdf file about fundraising study to use curcumin to treat NF tumors: http://texasnf.org/docs/MD_Anderson_Research.pdf
Well this is rather interesting. The actual cancer they are conducting clinical trials on using curcumin is Myeloma which my grandfather had as his second cancer.
So anyone out there with Myeloma (or Pancreatic) cancer, if you have run out of treatment options, there is currently a clinical trial being conducted at MD Anderson in Texas.
Here is the clinical trial study on the usage of curcumin for Myeloma. I will also include the link which you can access by clicking the lighthouse icon in my post title.
P.S. - clicking on the link above provides an easier to
read format of the study I pasted below. It will also bring you to the MD Anderson website for which you can view other clinical trials and treatment programs.
Study SummaryNo. 2003-0436:.......Myeloma......Saroj Vadhan-Raj......Palliative Care & Rehabilitation Medicine.
Study Summary Title
Study SummaryNumber:
2003-0436
Study Title:
Pilot Study of Curcumin (Diferuloylmethane Derivative) With or Without Bioperine in Patients with Multiple Myeloma.
Physician
New Patient Referral
Name:
Saroj Vadhan-Raj
Patients Call:
800-392-1611 (in U.S.A.) 713-792-6161 (outside U.S.A.)
Dept:
Palliative Care & Rehabilitation Medicine
Referring MDCall:
800-392-1611 (in U.S.A.) 713-792-6161 (outside U.S.A.)
Phone:
713-792-7966Contact us about clinical trials
.
General Information
Disease Group:
Myeloma
Supported By:
Sabinsa Corporation
Phase of Study:
N/A
ReturnVisit:
Every 4 weeks.
TreatmentAgents:
BioperineCurcumin
Home Care:
Curcumin and Bioperine are both in pill form, therefore, could be taken orally at home.
Treatment Loc:
Only at MDACC
EstimatedLength of Stayin Houston:
None for the treatment
Description/Intervention:
The goal of this clinical research study is to compare curcumin alone to curcumin given in combination with Bioperine in the treatment of multiple myeloma. The safety of these two treatments and how the disease responds will also be compared..
Study Objectives / Outcomes
(1) To evaluate clinical tolerance and response to curcumin alone and in combination with Bioperine in patients with multiple myeloma.(2) To compare the pharmacokinetics and pharmacodynamics of curcumin and curcumin + Bioperine and evaluate the effect of Bioperine on the bioavailability of curcumin.(3) To evaluate the biologic effects of curcumin alone and in combination with Bioperine on the expression of NF-B and related genes in the MM cells..
Study Status Information
Study Activation / Registration Date:
11/03/2004
IRB Review and Approval Date:
07/02/2003
Study Type:
Therapeutic
Recruitment Status:
Open
Projected Accrual:
N/A.
Enrollment Eligibility
If you do not meet the enrollment eligibility, there may be other treatment options for you. Please Contact the Referral Office for more information.
Inclusion Criteria:
1) Multiple myeloma patients who have been previously untreated, are asymptomatic and without serious or imminent complications, have relapsed or failed treatment with conventional treatment or progressed on no or limited maintenance, or are in stable partial remission.2) Bone marrow plasma cells >/= 10% and serum M-protein level >/= 0.5 g/dL and/or urinary Bence Jones protein >/= 100 mg/24 hr. When the bone marrow (BM) plasma cell differential is <10%> 1000/mm^3, platelet count > 100,000/mm^3, Hgb > 10 gms/dL), renal (serum creatinene <>/= 6 months.7) Effective means of contraception for women of child bearing potential.8) Women of child-bearing potential must have a negative pregnancy test.9) Ability to comply with study visit schedule and protocol requirements.
Exclusion Criteria:
1) Pregnant or lactating women.2) Previously untreated patients with high tumor mass, symptomatic or impending fractures, hypercalcemia or plasma cell leukemia.3) Patients with benign monoclonal gammopathy (MGUS) or non-secretory multiple myeloma.4) Significant cardiac disease, dysarrhythmia, or recent H/O MI or ischemia.5) Comorbid condition which renders patients at high risk of treatment complications.6) History of significant neurological or psychiatric disorders including dementia or seizures that would impede consent, treatment or follow-up.7) H/O curcumin or Bioperine supplement in prior 4 weeks.8) Patients on anti-convulsants, anti-coagulant treatment, or anti-arrhythmic medications for cardiac arrhythmia other than atrial fibrillation.
Well this is rather interesting. The actual cancer they are conducting clinical trials on using curcumin is Myeloma which my grandfather had as his second cancer.
So anyone out there with Myeloma (or Pancreatic) cancer, if you have run out of treatment options, there is currently a clinical trial being conducted at MD Anderson in Texas.
Here is the clinical trial study on the usage of curcumin for Myeloma. I will also include the link which you can access by clicking the lighthouse icon in my post title.
P.S. - clicking on the link above provides an easier to
read format of the study I pasted below. It will also bring you to the MD Anderson website for which you can view other clinical trials and treatment programs.
Study SummaryNo. 2003-0436:.......Myeloma......Saroj Vadhan-Raj......Palliative Care & Rehabilitation Medicine.
Study Summary Title
Study SummaryNumber:
2003-0436
Study Title:
Pilot Study of Curcumin (Diferuloylmethane Derivative) With or Without Bioperine in Patients with Multiple Myeloma.
Physician
New Patient Referral
Name:
Saroj Vadhan-Raj
Patients Call:
800-392-1611 (in U.S.A.) 713-792-6161 (outside U.S.A.)
Dept:
Palliative Care & Rehabilitation Medicine
Referring MDCall:
800-392-1611 (in U.S.A.) 713-792-6161 (outside U.S.A.)
Phone:
713-792-7966Contact us about clinical trials
.
General Information
Disease Group:
Myeloma
Supported By:
Sabinsa Corporation
Phase of Study:
N/A
ReturnVisit:
Every 4 weeks.
TreatmentAgents:
BioperineCurcumin
Home Care:
Curcumin and Bioperine are both in pill form, therefore, could be taken orally at home.
Treatment Loc:
Only at MDACC
EstimatedLength of Stayin Houston:
None for the treatment
Description/Intervention:
The goal of this clinical research study is to compare curcumin alone to curcumin given in combination with Bioperine in the treatment of multiple myeloma. The safety of these two treatments and how the disease responds will also be compared..
Study Objectives / Outcomes
(1) To evaluate clinical tolerance and response to curcumin alone and in combination with Bioperine in patients with multiple myeloma.(2) To compare the pharmacokinetics and pharmacodynamics of curcumin and curcumin + Bioperine and evaluate the effect of Bioperine on the bioavailability of curcumin.(3) To evaluate the biologic effects of curcumin alone and in combination with Bioperine on the expression of NF-B and related genes in the MM cells..
Study Status Information
Study Activation / Registration Date:
11/03/2004
IRB Review and Approval Date:
07/02/2003
Study Type:
Therapeutic
Recruitment Status:
Open
Projected Accrual:
N/A.
Enrollment Eligibility
If you do not meet the enrollment eligibility, there may be other treatment options for you. Please Contact the Referral Office for more information.
Inclusion Criteria:
1) Multiple myeloma patients who have been previously untreated, are asymptomatic and without serious or imminent complications, have relapsed or failed treatment with conventional treatment or progressed on no or limited maintenance, or are in stable partial remission.2) Bone marrow plasma cells >/= 10% and serum M-protein level >/= 0.5 g/dL and/or urinary Bence Jones protein >/= 100 mg/24 hr. When the bone marrow (BM) plasma cell differential is <10%> 1000/mm^3, platelet count > 100,000/mm^3, Hgb > 10 gms/dL), renal (serum creatinene <>/= 6 months.7) Effective means of contraception for women of child bearing potential.8) Women of child-bearing potential must have a negative pregnancy test.9) Ability to comply with study visit schedule and protocol requirements.
Exclusion Criteria:
1) Pregnant or lactating women.2) Previously untreated patients with high tumor mass, symptomatic or impending fractures, hypercalcemia or plasma cell leukemia.3) Patients with benign monoclonal gammopathy (MGUS) or non-secretory multiple myeloma.4) Significant cardiac disease, dysarrhythmia, or recent H/O MI or ischemia.5) Comorbid condition which renders patients at high risk of treatment complications.6) History of significant neurological or psychiatric disorders including dementia or seizures that would impede consent, treatment or follow-up.7) H/O curcumin or Bioperine supplement in prior 4 weeks.8) Patients on anti-convulsants, anti-coagulant treatment, or anti-arrhythmic medications for cardiac arrhythmia other than atrial fibrillation.
Good excuse to enjoy a weekend Indian buffet
Yesterday we decided to go out and enjoy the taste of tumeric and curry. Recently researchers at MD. Anderson in Texas have found the ingredient "curcumin" in many curries of Indian and Thai dishes to be effective in shrinking tumor in mice. Currently they are conducting clinical trials on cancer patients and are hopeful that it will be useful in shrinking NF2 tumors as an alternative form of medicine.
Tasty curry might have a fringe benefit
Updated 1/8/2007 8:13 AM ET
By Dibyangshu Sarkar, AFP/Getty Images
Former Indian model Divya Chauhan cooks a curry inside her kitchen in Bangalore, India. Studies have suggested that the spice could protect against heart disease, cancer and Alzheimer's.
_____________________________________________
IT'S THE SPICES THAT HELP YOU
Indian food offers many benefits, especially if dishes are prepared with a healthy oil such as canola instead of butter or ghee, says Alamelu Vairavan, co-author of the book Healthy South Indian Cooking. She recommends preparing dishes loaded with brightly colored vegetables, which contain natural disease-fighting substances called anti-oxidants.
Indian food typically contains curry powder or turmeric, which scientists believe contains a compound that protects against arthritis, Alzheimer's and other diseases, she says. Curry powder is a blend of spices that includes turmeric, a mild-tasting spice made by grinding up the root of the curcuma plant, she says.
Sample menu
• Appetizer Tuna masala served with sliced French bread
• First course Cauliflower soup
• Side dish Bell pepper and tomato rice with cashews
• Entree Chettinad chicken kulambu
• Side dish Cucumber and tomato yogurt salad
• Dessert Carrot halva
Source: Healthy South Indian Cooking by Alamelu Vairavan and Patricia Marquardt ($24.95 Hippocrene Books)
_____________________________________________
By Kathleen Fackelmann, USA TODAY
Five years ago Darci Jayne hardly ever touched a vegetable and pretty much lived on pizza, pasta and fast food.
That diet led to weight gain and health problems, including severe joint pain. "I was close to 200 pounds and getting scared," she says.
By cutting portion sizes she lost 50 pounds but always felt as if she were on a diet. Then Jayne took an Indian cooking class that emphasized fresh vegetables and curry spices.
She began to whip up an Indian dinner once or twice a week — and soon she noticed she wasn't always looking for a late-night snack. And the curry in the food offered her a bonus: It seemed to ease the pain and swelling in her joints.
"I have arthritis," says Jayne, 55. "But I'm moving better now."
Preliminary research suggests Jayne may be right. A study in the November issue of Arthritis & Rheumatism suggests turmeric, one component of curry spice, almost completely prevented joint swelling in rats with arthritis. Other studies have suggested that the spice could protect against diseases such as heart disease, cancer and Alzheimer's, a degenerative brain disease that afflicts nearly 5 million people in the USA.
Rates of Alzheimer's in India are about four times lower than in the USA, says Gregory Cole, a researcher at the University of California-Los Angeles. His studies suggest that curry contains a powerful substance that might protect the brain from damage that leads to Alzheimer's.
Surprising findings in mice
Can scientists prove curry wards off such diseases as Alzheimer's or cancer? Not yet, says Bharat Aggarwal at the University of Texas-Houston. But he says the growing file on curry includes compelling evidence gleaned from animal and human studies.
The findings from Western science fit with what traditional Indian healers have long said about turmeric. "They call it the spice of life," says P. Murali Doraiswamy, an Alzheimer's expert at Duke University in Durham, N.C.
For centuries, doctors trained in Ayurvedic medicine, a traditional medical system in India, have turned to turmeric to treat inflammatory diseases such as arthritis, says Janet Funk, a researcher at the University of Kansas. In the USA, many people with arthritis take over-the-counter supplements that contain curcumin, the active ingredient in turmeric.
In the November study, Funk and her colleagues gave rats that were bred to develop rheumatoid arthritis injections of turmeric. "The turmeric almost completely prevented the onset of arthritis," Funk says. The spice also seemed to help stop joint destruction in rats that had already started to develop the disease, she says.
Curry also may offer some protection against cancer. "Indians eat from 100 to 200 milligrams of curry every day, and that might be enough to prevent cancer," says Aggarwal of the M.D. Anderson Cancer Center at the University of Texas.
The curcumin in curry seems to shut down genes that trigger the development and the spread of breast cancer, animal studies in Aggarwal's lab suggest. And a preliminary human study suggests curcumin supplements might — in a handful of cases — be able to stabilize pancreatic cancer, he says.
Epidemiology studies in humans also have linked frequent use of turmeric spice to lower rates of breast, prostate and colon cancer, he says.
Large clinical studies still needed
Other research suggests curry might shield the brain from Alzheimer's, Cole says.
The studies on curry and Alzheimer's include:
•A test-tube study by researchers at UCLA in October showed that curcumin could help clear the human brain of toxic protein deposits thought to cause the memory loss and confusion of Alzheimer's.
•A study of more than 1,000 older men in Singapore last year found that those who ate lots of curry-spiced food did better on memory tests than those who rarely ate the spice.
The findings from Singapore suggest curry may help keep the aging brain in top shape. But to get the proof that curcumin fights cancer or Alzheimer's or arthritis, researchers will have to conduct large clinical trials, Cole says, and those studies will be expensive and take years to complete.
Americans don't need to wait for the proof on curry to enjoy a diet that includes more of this spice, says Alamelu Vairavan, co-author of the book Healthy South Indian Cooking. "You don't need to gulp supplements," she says, adding that cooks can find turmeric in Indian specialty shops and in most grocery stores.
Americans should give Indian food a try, Vairavan says. "This kind of food is very tasty and satisfying."
Eating more Indian food has worked for Jayne, who lives with her family in a small town outside Milwaukee. A family physician who recently retired because of disabling arthritis pain, Jayne says she knows there's no hard evidence of curry's health benefits. But that won't stop her from enjoying a lunch of tuna masala or an Indian stir-fry for dinner. She says the food seems to warm her joints and helps keep her in a size 8 dress.
"You can't argue with success," she says.
Friday, June 08, 2007
Thursday, June 07, 2007
Positives
Everyday the challenge is to find the the good no matter what life throws at you.
Good moments today and the past few days:
When I was struggling with dispair and hope while fear began sinking in, I read that Sean Swarner is back on the mountain (Denali) and will "Keep Climbing" to achieve his goals and be an inspiration for the cancer community.
To read his journal and follow his journey go here: http://www.cancerclimber.org/climb.html
I discovered that my long time friend has found someone truly special and is engaged! Congratulations Joanne and Travis!
To see photos of their spectacular sailing journey and where Travis proposed, go here:
http://picasaweb.google.com/joannedelorme/Providencia
I am blessed with a wonderful and supportive husband who is always there for me. We have had many good times together and our life is always full and an interesting journey.
My dogs (even though almost 6 years old) are still as cute as puppies and bring a smile and much joy to my life everyday.
Last night I was able to stand on the BOSU ball trainier for over 5 minutes setting a new personal record!!!!!
The other day on a walk with the dogs, we saw a fantastic site! We witnessed a large bird which I assume was a majestic Great Herring at the pond for the first time this year. On the same walk there was a fresh rain that cleared with the sun breaking through the clouds. The aroma of the fresh earth and grass reawakened my spirit as I inhaled the breath of living.
A few days prior when we were out for our walk on the same trail, a lovely couple bird watching and taking pictures stopped me to show their wonderful discovery. Even though I am deaf, they were still interested in communicating (the man knew how to fingerspell) and pointed out the very RARE site of an American Bittern which I have never seen in the wild before. If they had not been so kind and eager to share their discovery, I would have missed the opportunity.
Saturday was nice and I had the chance to visit one of my places of refuge here at the Bellevue Botanical Gardens. The blooms and perfection of landscape are just lovely! It is an art I truly appreciate mostly especially because I do not have a green thumb! It is nice to have such peaceful places nearby to visit. As an added bonus, Harley surprised me and showed up. We had text messaged each other as we had different agendas that day and I thought he was in a complete different location. LOL While taking a photo of some gorgeous rhododendron trees, he came up to me from behind! hehe ;o)
Here is a quote that has instilled inspiration and hope for me today. I have read it before but it left my mind and today was a perfect time to revisit it!
You gain strength, courage and confidence by every experience in which you really stop to look fear in the face…You must do the thing you think you cannot do.
- Eleanor Roosevelt
Good moments today and the past few days:
When I was struggling with dispair and hope while fear began sinking in, I read that Sean Swarner is back on the mountain (Denali) and will "Keep Climbing" to achieve his goals and be an inspiration for the cancer community.
To read his journal and follow his journey go here: http://www.cancerclimber.org/climb.html
I discovered that my long time friend has found someone truly special and is engaged! Congratulations Joanne and Travis!
To see photos of their spectacular sailing journey and where Travis proposed, go here:
http://picasaweb.google.com/joannedelorme/Providencia
I am blessed with a wonderful and supportive husband who is always there for me. We have had many good times together and our life is always full and an interesting journey.
My dogs (even though almost 6 years old) are still as cute as puppies and bring a smile and much joy to my life everyday.
Last night I was able to stand on the BOSU ball trainier for over 5 minutes setting a new personal record!!!!!
The other day on a walk with the dogs, we saw a fantastic site! We witnessed a large bird which I assume was a majestic Great Herring at the pond for the first time this year. On the same walk there was a fresh rain that cleared with the sun breaking through the clouds. The aroma of the fresh earth and grass reawakened my spirit as I inhaled the breath of living.
A few days prior when we were out for our walk on the same trail, a lovely couple bird watching and taking pictures stopped me to show their wonderful discovery. Even though I am deaf, they were still interested in communicating (the man knew how to fingerspell) and pointed out the very RARE site of an American Bittern which I have never seen in the wild before. If they had not been so kind and eager to share their discovery, I would have missed the opportunity.
Saturday was nice and I had the chance to visit one of my places of refuge here at the Bellevue Botanical Gardens. The blooms and perfection of landscape are just lovely! It is an art I truly appreciate mostly especially because I do not have a green thumb! It is nice to have such peaceful places nearby to visit. As an added bonus, Harley surprised me and showed up. We had text messaged each other as we had different agendas that day and I thought he was in a complete different location. LOL While taking a photo of some gorgeous rhododendron trees, he came up to me from behind! hehe ;o)
Here is a quote that has instilled inspiration and hope for me today. I have read it before but it left my mind and today was a perfect time to revisit it!
You gain strength, courage and confidence by every experience in which you really stop to look fear in the face…You must do the thing you think you cannot do.
- Eleanor Roosevelt
Tuesday, June 05, 2007
Incredibly Humbled I
Wow! You know how I just posted this morning about my feats of accomplishment standing on the BOSU ball? Well when I did a search for it I also came upon this site where they use the BOSU ball for sports condition training.
LOL I must look like a dang fool compared to what they are doing in the short video on this site! I am quite literally blown away!
Check out the link I have included by clicking on the lighthouse in the post title. OR if that does not work for you, past the following into your browser to view the website for TWIST CONDITIONING INC. - the sport conditioning specialists:
http://www.sportconditioning.ca/
The small video automatically appears when you open the page and is not at all boring. It is very fast paced and almost makes my head spin.
LOL I must look like a dang fool compared to what they are doing in the short video on this site! I am quite literally blown away!
Check out the link I have included by clicking on the lighthouse in the post title. OR if that does not work for you, past the following into your browser to view the website for TWIST CONDITIONING INC. - the sport conditioning specialists:
http://www.sportconditioning.ca/
The small video automatically appears when you open the page and is not at all boring. It is very fast paced and almost makes my head spin.
About Sports Conditioning from the BOSU site:
Sports conditioning, by its nature, is dynamic. The qualities of sports movement that can be trained with BOSU® Balance Trainer include endurance and power, cardiovascular conditioning, agility, balance, proprioception and flexibility. You can accomplish specific transfers to almost any sport through a variety of static balance exercises and dynamic balance drills. The variations are almost unlimited. One, two or multiple BOSU® Balance Trainers can be used to set up drill patterns for sports goals.
Here is another site I found with the BOSU balance trainer
http://www.wtnh.com/global/story.asp?s=1367599&ClientType=Printable
Here is another site I found with the BOSU balance trainer
http://www.wtnh.com/global/story.asp?s=1367599&ClientType=Printable
(WTNH, July 20, 2003) _ It's hard to believe that bouncing on a squishy half moon shaped ball can actually get you in shape. But, it can! The new form of exercise is called BOSU. From rehabbing a reconstructed knee to setting world records, BOSU allows you to find your "point of challenge" and develop beyond that point.
A local aerobics instructor will be here to show us how to do it.
Watch the interview
For more information on BOSU Balance Training: http://www.bothsidesup.com/.For more information on Club Fitness: www.guilfordfitness.com/index.cfm
Red Hot Poker!
If you are in your 30s like me, you may remember from MTV in the early 90s, the hyper blond actor that would seem to have a stress attack on camera. He would get uptight and his slogan was the feeling of "a red hot poker".
Well this morning I feel like I have a searing red hot poker in my good eye!
Here is how it goes: with NF2 I cannot produce tears or enough to actually cry. In addition, the eye lid of my right eye (the side which I have experienced facial paralysis on) does not actually close fully when unconscious (sleeping). Therefore at night I have to use Refresh Gel Drops in my eyes and wear an eye mask (obtained from an airplane trip in 2004) to keep my eye closed. Most people with NF2 tape their eye shut but I have not resorted to that as I get up many times a night to use the restroom. If my eye was taped shut I would have to remove it and reapply it each time while not fully awake.
The result is that I wake up in the morning with irritated eyes most often one of which is completely pasted shut (the left good eye) and the other not fully pasted shut but crusty. I need to use the restroom immediately upon waking. Hence my eye mask sits on my head and I use the one eye (the poor one) to stumble my way to the bathroom.
Normally I could take time to readjust by putting Refresh Tears on my eyes (which are thinner to loosen the dried gel). This would take a transition period though and I don't have that kind of time when I wake. My urge is immediate. If I can consciously become aware fast enough, I splash some tears on my eyes and hurriedly make my way to the restroom trying not to take off a shoulder, trip, or break my arm when I sit on the toilet seat (I often have to reach out and grab the floor to keep from falling).
After my relief is the time when I make the routine of splashing warm water (or using cold while waiting for the water to heat up) on my eyes to unpaste them. Sometimes when the water warms I use a hot washcloth compress on my eyes and lie back down to let the warm dampness unglue them. However, I have been known to fall back asleep when I do this.
In all it probably takes me a half hour to an hour to adjust to the vertical world from hours in the horizontal. Yes this is a rather significant transition and important daily ritual for many people with NF2 before they can function for the day.
Back to the searing hot poker.........Somehow something went wrong and happened to my good eye that gets pasted shut. I awoke with burning pain in that eye. I recall getting up during the course of my sleep to use the restroom. When I awoke very early this morning I noticed that my lower lid was dried hanging open a little (kind of if you slightly pulled your eye lid down to look for a hair in your eye). At that time I noticed I was half awake and disoriented. I think I splashed water on my eyes to get the gel off. Then I returned to bed and I THINK I reapplied the gel drops to both eyes and put on my eye mask. I really can't remember nor can I remember from when I woke up as the pain distracted me.
My right eye seems fine. Yet my left eye burns really bad and I have applied water rinses and several tear drops to try to wash it out. I thought maybe a hair got stuck under my eye lid.
Upon inspecting my eye with a flashlight (I cannot do this with the right eye), I noticed that it was all blood shot. The little red aggravated capillaries covered the white space of my eye ball. I could find no hair or debris. The only thing I can figure is that maybe one of the hard crusties fell it my eye and scratched it! I have scratched the cornea of my other eye before and the pain does feel similar.
WONDERFUL! THESE ANNOYANCES OF NF2 DO NOT MAKE FOR A PLEASANT START TO THE DAY!
I have gained minor relief by reapplying gel drops to that eye and lying down for a few minutes. It has improved and I can see out of it but it is sore and giving me dull head pain on that side of my head.
If I use the ointment not only will it blur my vision, but the ointment has caused a slight burning irritation in my eye in the past.
So for now and for this morning or maybe even today, I guess I will have to contend with a "red hot poker".
Well this morning I feel like I have a searing red hot poker in my good eye!
Here is how it goes: with NF2 I cannot produce tears or enough to actually cry. In addition, the eye lid of my right eye (the side which I have experienced facial paralysis on) does not actually close fully when unconscious (sleeping). Therefore at night I have to use Refresh Gel Drops in my eyes and wear an eye mask (obtained from an airplane trip in 2004) to keep my eye closed. Most people with NF2 tape their eye shut but I have not resorted to that as I get up many times a night to use the restroom. If my eye was taped shut I would have to remove it and reapply it each time while not fully awake.
The result is that I wake up in the morning with irritated eyes most often one of which is completely pasted shut (the left good eye) and the other not fully pasted shut but crusty. I need to use the restroom immediately upon waking. Hence my eye mask sits on my head and I use the one eye (the poor one) to stumble my way to the bathroom.
Normally I could take time to readjust by putting Refresh Tears on my eyes (which are thinner to loosen the dried gel). This would take a transition period though and I don't have that kind of time when I wake. My urge is immediate. If I can consciously become aware fast enough, I splash some tears on my eyes and hurriedly make my way to the restroom trying not to take off a shoulder, trip, or break my arm when I sit on the toilet seat (I often have to reach out and grab the floor to keep from falling).
After my relief is the time when I make the routine of splashing warm water (or using cold while waiting for the water to heat up) on my eyes to unpaste them. Sometimes when the water warms I use a hot washcloth compress on my eyes and lie back down to let the warm dampness unglue them. However, I have been known to fall back asleep when I do this.
In all it probably takes me a half hour to an hour to adjust to the vertical world from hours in the horizontal. Yes this is a rather significant transition and important daily ritual for many people with NF2 before they can function for the day.
Back to the searing hot poker.........Somehow something went wrong and happened to my good eye that gets pasted shut. I awoke with burning pain in that eye. I recall getting up during the course of my sleep to use the restroom. When I awoke very early this morning I noticed that my lower lid was dried hanging open a little (kind of if you slightly pulled your eye lid down to look for a hair in your eye). At that time I noticed I was half awake and disoriented. I think I splashed water on my eyes to get the gel off. Then I returned to bed and I THINK I reapplied the gel drops to both eyes and put on my eye mask. I really can't remember nor can I remember from when I woke up as the pain distracted me.
My right eye seems fine. Yet my left eye burns really bad and I have applied water rinses and several tear drops to try to wash it out. I thought maybe a hair got stuck under my eye lid.
Upon inspecting my eye with a flashlight (I cannot do this with the right eye), I noticed that it was all blood shot. The little red aggravated capillaries covered the white space of my eye ball. I could find no hair or debris. The only thing I can figure is that maybe one of the hard crusties fell it my eye and scratched it! I have scratched the cornea of my other eye before and the pain does feel similar.
WONDERFUL! THESE ANNOYANCES OF NF2 DO NOT MAKE FOR A PLEASANT START TO THE DAY!
I have gained minor relief by reapplying gel drops to that eye and lying down for a few minutes. It has improved and I can see out of it but it is sore and giving me dull head pain on that side of my head.
If I use the ointment not only will it blur my vision, but the ointment has caused a slight burning irritation in my eye in the past.
So for now and for this morning or maybe even today, I guess I will have to contend with a "red hot poker".
Click on the lighthouse in the above post title to see the Refresh brand website and find out what "dry eye" is.
My Balancing Act
It's a flying saucer! Look out! LOL No the above photo is actually my latest toy device at Gold's gym. It is called a BOSU (both sides up) balance trainer. It is like a swiss balance ball cut in half and mounted on a hard plastic base.
Apparently there are several exercises you can do with it (what I would consider extremely difficult and advanced....not sure if I could ever attain some and others I know I cannot). However I just try to simply stand on the thing.
I remember the first time Harley was showing off and jumping up and down on it while I had extreme difficulty just maintaining 5 seconds of stationary standing without falling off. Yeah I have walked a marathon and climbed the tallest tower on the west coast but I just make you think things are easy when actually they are not. My legs are continually bruised from falls in just normal daily life and I have fallen down the stairs bruising my tailbone and most recently spraining my other ankle (I sprained the opposite one when I came home from treatment in summer 2004).
Anyhow, I am really proud to say I have gone from finding it extremely challenging to stay on the device for 10 seconds to my recent accomplishment a couple days ago of staying on for over 5 minutes.
I had a major breakthrough the day I climbed the Columbia Tower and met the Ershlers. After the climb I decided to stop off at the gym and workout seeing as it only took me 15-16 minutes to climb the tower. I had no idea really how long it would take to climb the tower as the Seattle marathon lasted hours to complete.
For a few weeks of practicing over and over again, I just could not seem to exceed 10 seconds and actually averaged 5 seconds as many tries resulted in 3 seconds before falling off. I was so elated after the tower climb that I was in a very determined mood. I am not even sure how many practice attempts it took me. I figured out that focusing on the striped colored wall in front of me helped immensly compared to a plain white wall with people walking past in my side view.
The stripes were large so I focused on the border between them that was near eye level. Then I noticed a few light scuffs on the wall in front of me and focused really hard on them until my eyes were not bouncing so much. My legs shaked as if they were about to crumble. I pictured the image of Susan Ershler's face and envisioned her telling me I could accomplish this feat. Finally after 150 seconds (yes that zero really is meant to be there) I released from the device happy and feeling "On Top of the World". What a great day! Not only did I climb the tower but I also drastically broke my measily 10 second record with an astonishing 150 seconds!!!!!
Now some people may observe me with strange curiousity or you yourself may wonder what the fuss is all about. For some, they would question why I was having such a struggle. I have to admit that I would have been one of them before losing my balance. Now I understand.
Often when I go to the gym, this is one of the balance activities I have been working on improving. About 6 weeks ago I broke my record again and almost made it to 5 minutes (I think it was 4 and a half). Yet when I came home it after dark, I got disoriented in the driveway and fell twisting my ankle badly and landing on it. Frustrated that my foolish foible would interupt the strides I made and hard work I had accomplished, I knew I would have to start again.
Fortunately I did not have to go back to the drawing board. I abstained from practicing on the BOSU trainer until my ankle felt a little stronger. After two or three weeks I could not contain myself any longer, jumped on one day and accomplished 2 minutes after some practice. Sunday night I accomplished over 5 minutes but I noticed the device I was standing on was re-inflated to its maximum capacity. I am not sure if this makes it easier or if my balance is actually improving. I will have to test out the difference tomorrow night.
About the ankle......Here is how it happened and something those of us with NF2 or balance challenges deal with DAILY!!! I should have known better really. As I said, I came home at night (dark out) when it is important to be more cautious as those of us balance challenged have a hard time with less light. (The best I can describe this is the difference between day driving and night driving...your perception and reflexes to situations drastically change. Now imagine having night blindness on top of that.)
I got out of my car at home not thinking in the right frame of mind about needing to be more cautious. My hair should have been tied back and it was not. I leaned down to pet the dogs and my hair fell in my face resulting in wild disorientation. I had no sense of direction (succumbing to a sort of land type vertigo). As I began dancing around to avoid falling and to get my bearings I twisted my ankle. Then the final icing on the cake was my heavy gym bag sliding off my right shoulder and causing me to come crashing directly on top of the twisted ankle.
It was excrutiating pain! The dogs were dumping on me and licking me all over my face as they worried about me hurting myself (they tend to do this when I hurt myself or I happen to be sad). LOL I am just editing this now and realized what I wrote here!!!!! ROFL I meant to say that my dogs were "JUMPING" on me and not "DUMPING" on me! Eeww! Gross! I am sure glad I have to ability to laugh at my foibles! ;+)
For the first few days I did not go anywhere as I had injured my right ankle. It hurt too much to drive and was painful going down the stairs. Five or six weeks have passed but it is still swollen (larger than the other one) and hurts in certain positions or just plain bothers me to the point where I feel like pulling it off my leg.
Yes I had it looked at 3 weeks afterward, but the doctor did not want to do xrays and said this was typical for a sprain. As a result, I have had to cease my running that I was making improvements in (was hoping to run some 5 Ks this summer and work up to a 10K). I also stopped going to the water aerobics which I have really enjoyed and is good for my balance as there are certain moves or running in the pool which would cause the wrong kind of strain on the ankle. If it is doing better I can commence running in July. Perhaps I will try returning to water aerobics next week.
What else have I been doing to keep active and work on balance? Well fortunately I can still walk without my ankle bothering me. Last week I tried running for short spurts and took the next day off completely. I have also been back to lifting weights this year as I am trying to gain back muscle strength that will help me improve my balance. In addition, there is this machine I really like developed by Cybex which takes impact and jarring off the ankles. It is like a combination of running, cross country skiing, and stair climbing. It is great!!!!
By the way, check out the link to find out more about what a BOSU is by clicking the lighthouse link in the post title. It is cool!
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