Wow! Time really flies! I can't believe April is ending already and that I have been on the steroids for a month. Today is my first day without them. I was a little concerned about this date approaching but so far it seems to be going well. I have been able to eat and I have no head pressure or headaches.
My balance still feels a little sketchy but I am not sick with vertigo or dizziness. This could be attributed to either the tumor dying more and the pressure going down or the fact that the opthamalogist increased (doubled) my dosage of diamox 2 weeks ago. In case you missed it in an earlier post or do not know, the diamox was prescribed to me because the swelling of the tumor was causing swelling of my optic nerves and some vision problems. Diamox is often prescribed to mountain climbers who succumb to altitude sickness as a method to relieve swelling in the brain.
Okay is nice outside and I have to walk the dogs today. I gave them a break yesterday because Katie looked sore from hiking on Tuesday. I wanted to give her a day of rest so I went to the gym and used the stairmaster instead. I also have to pick up my refill of diamox as I used the last of it this morning.
Have a great day! :o)
Thursday, April 28, 2005
Thursday, April 21, 2005
What's in Bloom in the Yard?
The daffodils in the drive are almost finished blooming. All the daffodils in the pots on the deck are in full bloom. In the yard we have two beautiful lavendar/purple azaleas that are open, pink and white varieties of Heather, a big and beautiful white cherry tree, two cream color azaleas are opening, and it looks as if a red or hot pink azalea will bloom within the next couple weeks.
Up on the hill I discovered some type of light purple wildflower that looks like a forget-me-knot, fushia flowers that look like wild roses from what I believe to be thimble berry bushes, and some type of white flowers that resemble candy tuft.
In May our red and peach (I think a couple pink too) rhododendrons will open. I really love the flowers here and wish I had more of a talent for landscaping.
Up on the hill I discovered some type of light purple wildflower that looks like a forget-me-knot, fushia flowers that look like wild roses from what I believe to be thimble berry bushes, and some type of white flowers that resemble candy tuft.
In May our red and peach (I think a couple pink too) rhododendrons will open. I really love the flowers here and wish I had more of a talent for landscaping.
Tuesday, April 19, 2005
My 15 year Remission Plan
A week ago I told you about my 12 year remission date of having my last chemotherapy treatment. Somehow I did not get around to celebrating my 10 year remission. I think everyone forgot about it because I had NF2. It seems sometimes that the NF2 has taken away from the glory and celebration of remission (like mine does not count or something because I have these benign brain tumors).
Well I own it! It means something to me and I guess that is all that matters. For those of you who have lived through cancer you know what I am talking about. I still would not trade the experience. I feel that I was given something more in life that only those who have had cancer can understand. You see the world differently and through an enhanced perspective. It almost makes you pity the people you see around you because they are in such a chaotic rush that they are truly missing out on some of the best parts of life!
I am the type of person who will ALWAYS stop to smell the roses (literally).
Anyhow, due to my balance problems I figure it is going to take me some time to recooperate and get back on track. After this first tumor finishes swelling and dying I have two more tumors to treat. The whole process is probably going to take 3 years. So I have decided that at my 15 year remission I want to have a celebration. A) to celebrate being cancer free for 15 years and B) for getting all these brain tumors from NF2 treated and in check hopefully for a long while.
I want to kick it all off by jumping off a mountain and flying free like a bird. My plan is to go paragliding off of Tiger Mountain in Issaquah, WA. I was supposed to go paragliding for my 30th birthday but it just so happens that the 9-11 incident occured 11 days prior and they had a flight ban on any parachuting activity within a certain distance of the city. We had to cancel and I was bummed.
Tiger mountain is a hike I have frequented over the years and where I met my friend Yumi. I have seen as many as 20 paragliders up there at a time and it just looks so free! They glide up and down for a half hour to and an hour and a half! All the while on a nice day you can soak in a gorgeous view of Mt. Rainier.
Well I own it! It means something to me and I guess that is all that matters. For those of you who have lived through cancer you know what I am talking about. I still would not trade the experience. I feel that I was given something more in life that only those who have had cancer can understand. You see the world differently and through an enhanced perspective. It almost makes you pity the people you see around you because they are in such a chaotic rush that they are truly missing out on some of the best parts of life!
I am the type of person who will ALWAYS stop to smell the roses (literally).
Anyhow, due to my balance problems I figure it is going to take me some time to recooperate and get back on track. After this first tumor finishes swelling and dying I have two more tumors to treat. The whole process is probably going to take 3 years. So I have decided that at my 15 year remission I want to have a celebration. A) to celebrate being cancer free for 15 years and B) for getting all these brain tumors from NF2 treated and in check hopefully for a long while.
I want to kick it all off by jumping off a mountain and flying free like a bird. My plan is to go paragliding off of Tiger Mountain in Issaquah, WA. I was supposed to go paragliding for my 30th birthday but it just so happens that the 9-11 incident occured 11 days prior and they had a flight ban on any parachuting activity within a certain distance of the city. We had to cancel and I was bummed.
Tiger mountain is a hike I have frequented over the years and where I met my friend Yumi. I have seen as many as 20 paragliders up there at a time and it just looks so free! They glide up and down for a half hour to and an hour and a half! All the while on a nice day you can soak in a gorgeous view of Mt. Rainier.
Two Things I Still Really Want To Do
My new National Geographic Adventure magazine came in the mail late last week and reminded me of my list of things in life I want to do. Featured are 10 of the world's best hikes. Mt. Kilamajaro in Africa is among the list and has been something I have dreamed of accomplishing probably since we went to Belize in 2000 and met a couple from Belgium who had tackled the great giant on one of their holidays.
I have also wanted to climb Mt. Rainier since I moved out here but now I am unsure if I will be able to due to the technical difficulty. On Rainier I think there are some ice crevaces to cross and maybe some areas requiring ice climbing. I will have to get the scoop from my friend Ravi when he attempts his first summit this summer. Rainier is smaller than Kilamajaro but due to our climate here, there is snow on it year round.
The Everest base camp was also a featured hike that I have been interested in doing. It is about 2000 feet smaller than Kilamajaro. I would still like to do that one but Kilamajaro is definitely on my to do list.
Along with summitting Kilamajaro, I have always dreamed since I was a kid of diving in the shark cages and meeting a great white shark up close and personal. The creatures absolutely fascinate me! This would also be an African trek as the tours go out of Cape Town South Africa.
So I have high hopes of this balance and tumor situation resolving. What can I say? I am a pressure junkie in both directions: high altitudes and below sea level. (just not in my damn brain)
I have also wanted to climb Mt. Rainier since I moved out here but now I am unsure if I will be able to due to the technical difficulty. On Rainier I think there are some ice crevaces to cross and maybe some areas requiring ice climbing. I will have to get the scoop from my friend Ravi when he attempts his first summit this summer. Rainier is smaller than Kilamajaro but due to our climate here, there is snow on it year round.
The Everest base camp was also a featured hike that I have been interested in doing. It is about 2000 feet smaller than Kilamajaro. I would still like to do that one but Kilamajaro is definitely on my to do list.
Along with summitting Kilamajaro, I have always dreamed since I was a kid of diving in the shark cages and meeting a great white shark up close and personal. The creatures absolutely fascinate me! This would also be an African trek as the tours go out of Cape Town South Africa.
So I have high hopes of this balance and tumor situation resolving. What can I say? I am a pressure junkie in both directions: high altitudes and below sea level. (just not in my damn brain)
Monday, April 18, 2005
Running and Double Vision
I recently have been brave enough to try running while I have been on the steroids. Since restarting the steroids on March 30th, I have gone running 4 times for 20-30 minutes. At first it starts out pretty good but within 15 minutes I get very disoriented and I see double vision (meaning two sets of trails and scenery in front of me).
When this occurs I cannot look straight ahead. Instead, I have to concentrate really hard and look at the ground a foot to 3 feet in front of me to ensure my footing and that I do not drift off the trail or trip on some stick or rock. Looking ahead or to either side is very distracting and would cause me to run off the trail. After about 30 minutes of running it is very difficult to walk straight and I feel as though I have been inflicted with a mild case of cerebal palsy. It seems to improve after 5 minutes I then I can walk normally. It takes about 10 minutes for my vision to return to normal where I can see the trail and scenery without the complication of double vision.
Why would I do this you ask? Well for one I like to know that I still can or as a great mountain climber once said of why he climbed Everest "Because I can." I believe that doing so challenges me and helps to improve my balance (no matter what anyone says). I have heard from other people who underwent imbalance due to brain surgeries that running helped them to regain their sense of balance.
LOL In addition, I seemed to have regained my taste and love of chocolate recently (following Easter). As a result of eating more and having a little bit of a sweet tooth everyday, I have gained back 5 of the 20 lbs I lost. So the addition of running burns a little more calories than just the plain ol' walking. :o)
When this occurs I cannot look straight ahead. Instead, I have to concentrate really hard and look at the ground a foot to 3 feet in front of me to ensure my footing and that I do not drift off the trail or trip on some stick or rock. Looking ahead or to either side is very distracting and would cause me to run off the trail. After about 30 minutes of running it is very difficult to walk straight and I feel as though I have been inflicted with a mild case of cerebal palsy. It seems to improve after 5 minutes I then I can walk normally. It takes about 10 minutes for my vision to return to normal where I can see the trail and scenery without the complication of double vision.
Why would I do this you ask? Well for one I like to know that I still can or as a great mountain climber once said of why he climbed Everest "Because I can." I believe that doing so challenges me and helps to improve my balance (no matter what anyone says). I have heard from other people who underwent imbalance due to brain surgeries that running helped them to regain their sense of balance.
LOL In addition, I seemed to have regained my taste and love of chocolate recently (following Easter). As a result of eating more and having a little bit of a sweet tooth everyday, I have gained back 5 of the 20 lbs I lost. So the addition of running burns a little more calories than just the plain ol' walking. :o)
Sunday, April 17, 2005
One of my BIG pet peeves about being deaf
I just finished watching Pearl Harbor which I found to be a really great movie. However, when checking out the bonus material on the disk and the making of the movie I found yet again that the dang director CHOSE to EXCLUDE the deaf and hard of hearing. This did not surprise me much as many of the big movies have done the same and left out the closed captioning for the directors commentaries, interviews with actors, making of the movie, and other such material. I was surprised however that although they did not spend the money to subtitle it in English, they DID pay for it to be subtitled in SPANISH! WHAT IS UP WITH THAT????????????!!!!!
Now don't misinterpret me. I have nothing against spanish speaking people or the Hispanic community here in America or any other language. But geez, there are 28 million people in America who are deaf or hard of hearing. Are they of that little value to our society??? Is the Hispanic population here more worthy of access to information? If you are going to subtitle it for one group at least be fair and subtitle it for the others (after all it is English!!).
Further, what really did surprise me is that this movie in particular includes many of those 28 million Americans who are WWII vets and have lost their hearing due to injuries from the war or from age. The director felt they were worthy enough to interview but obviously did not value them to think that maybe they would like to KNOW what was actually said in the interviews!
This really infuriates me! It is difficult to have blindly had such priveledges and then have them stripped away! I HATE the dependence upon other people of what information I am included in on or have access to. When you are hearing this never crosses your mind. It is something we take for granted such as having the ability to breath. Yet if you become stricken with asthma, the world and your perspective on it really changes!
I am going to get it out there seeing as these movies spent such a large budget on dramatic audio quality for the hearing but did not consider us important enough to caption the extra features: Lord of the Rings, Pirates of the Caribbean, Titanic, and Pearl Harbor just to name a few.
KUDOS!! to "Sky Captain" with Jude Law and Gwenneth Paltrow. For those who do not know, this movie was made on a very scarce budget and most of the scenes in the movie were produced using computer graphics. They simply did not have the money to create dramatic real sets like the other movies I mentioned. Yet throughout the whole movie I was incredibly impressed with the scenes and videography.
I really did not expect the making of the movie to be captioned due to the low budget they had to work with but I was thrilled to find that they thought of us and I am glad they did! Understanding and seeing the whole workings of the movie and what improvising they had to do to pull it off really enhanced my appreciation of the film. IT IS ONE OF THE ONLY FILMS I HAVE SEEN WHERE THEY CAPTIONED THE MAKING OF THE MOVIE AND BONUS MATERIAL!
I truly have a respect for both Jude and Gwenneth for taking on this film because it was a career risk due to new directors and a tight budget. I know that actors and actresses don't have much to do with the captioning of the films but it made me appreciate them more for being in a film that was accommodating. It is disappointing to me when a well known actress or actor stars in a film that is not captioned. It sounds crazy but I kind of get angry with the actor or actress for accepting such a role or not standing up and saying "hey we really need to caption this movie for our deaf and hard of hearing fans".
On a side note, my other pet peeve about recent films is that I am noticing a surgance of films that are not "CC" meaning "closed captioned". The government has mandated that movies produced here be captioned by the year 2006. What is happening is that many of these directors are producing the movies in other countries and thus do not have to caption them. I can't tell you how many films I had to put down or return to the video store because I got home and it was not captioned. What makes me even more angry is that it says it is "subtitled". I get the dang thing home to find that it is subtitled ONLY IN SPANISH!
Normally these are bordering on or are B-rated flicks. Yet, the other night we rented the National Lampoon's movie "Black Ball" which was not captioned at all (subtitled only in Spanish again) and there were some more well known actors in it. The movie was filmed in England.....those damn Britts!
Anyhow, this is one of my big frustrations lately. When we had cable tv there were several programs on the discovery and science channel that I wanted to see but were not captioned. This is a common occurrence with educational material. I LOVE Great White sharks and I was sorely disappointed that the "Air Jaws" documentary series filmed in New Zealand was not captioned. I was crushed actually. :o(
Now don't misinterpret me. I have nothing against spanish speaking people or the Hispanic community here in America or any other language. But geez, there are 28 million people in America who are deaf or hard of hearing. Are they of that little value to our society??? Is the Hispanic population here more worthy of access to information? If you are going to subtitle it for one group at least be fair and subtitle it for the others (after all it is English!!).
Further, what really did surprise me is that this movie in particular includes many of those 28 million Americans who are WWII vets and have lost their hearing due to injuries from the war or from age. The director felt they were worthy enough to interview but obviously did not value them to think that maybe they would like to KNOW what was actually said in the interviews!
This really infuriates me! It is difficult to have blindly had such priveledges and then have them stripped away! I HATE the dependence upon other people of what information I am included in on or have access to. When you are hearing this never crosses your mind. It is something we take for granted such as having the ability to breath. Yet if you become stricken with asthma, the world and your perspective on it really changes!
I am going to get it out there seeing as these movies spent such a large budget on dramatic audio quality for the hearing but did not consider us important enough to caption the extra features: Lord of the Rings, Pirates of the Caribbean, Titanic, and Pearl Harbor just to name a few.
KUDOS!! to "Sky Captain" with Jude Law and Gwenneth Paltrow. For those who do not know, this movie was made on a very scarce budget and most of the scenes in the movie were produced using computer graphics. They simply did not have the money to create dramatic real sets like the other movies I mentioned. Yet throughout the whole movie I was incredibly impressed with the scenes and videography.
I really did not expect the making of the movie to be captioned due to the low budget they had to work with but I was thrilled to find that they thought of us and I am glad they did! Understanding and seeing the whole workings of the movie and what improvising they had to do to pull it off really enhanced my appreciation of the film. IT IS ONE OF THE ONLY FILMS I HAVE SEEN WHERE THEY CAPTIONED THE MAKING OF THE MOVIE AND BONUS MATERIAL!
I truly have a respect for both Jude and Gwenneth for taking on this film because it was a career risk due to new directors and a tight budget. I know that actors and actresses don't have much to do with the captioning of the films but it made me appreciate them more for being in a film that was accommodating. It is disappointing to me when a well known actress or actor stars in a film that is not captioned. It sounds crazy but I kind of get angry with the actor or actress for accepting such a role or not standing up and saying "hey we really need to caption this movie for our deaf and hard of hearing fans".
On a side note, my other pet peeve about recent films is that I am noticing a surgance of films that are not "CC" meaning "closed captioned". The government has mandated that movies produced here be captioned by the year 2006. What is happening is that many of these directors are producing the movies in other countries and thus do not have to caption them. I can't tell you how many films I had to put down or return to the video store because I got home and it was not captioned. What makes me even more angry is that it says it is "subtitled". I get the dang thing home to find that it is subtitled ONLY IN SPANISH!
Normally these are bordering on or are B-rated flicks. Yet, the other night we rented the National Lampoon's movie "Black Ball" which was not captioned at all (subtitled only in Spanish again) and there were some more well known actors in it. The movie was filmed in England.....those damn Britts!
Anyhow, this is one of my big frustrations lately. When we had cable tv there were several programs on the discovery and science channel that I wanted to see but were not captioned. This is a common occurrence with educational material. I LOVE Great White sharks and I was sorely disappointed that the "Air Jaws" documentary series filmed in New Zealand was not captioned. I was crushed actually. :o(
Friday, April 15, 2005
My ASL activities for the week
Ahh it has been a busy week indeed!
Tuesday night Melody came over to study ASL level 3 vocabulary. This was our first study session and next week we are having two more people come over to my house. All three of them are taking ASL level 3 at Bellevue Community College this quarter and want to transfer to the interpreter program at Seattle Central Community College next year.
Seattle Central Community College is the only state funded school here that offers asl classes beyond level 3 because they are the only school in western washington that offers a two year degree in deaf studies or interpreter training. I have had up to level 4 but I could not continue last quarter with level 5 because of my symptoms and vision problems from the tumor swelling. The classes must be taken in a series and are only offered one time a year.
Anyhow, I have all the vocabulary video tapes for asl 4-6. So I made asl card games based on the vocabulary from asl 4 for our weekly meetup group. On Tuesday nights, Melody, Laura, and Diane are coming over to review the vocabulary and practice. This is good for me because without using or motivating myself to practice, I forget some of my vocabulary.
Wednesday night was our regular meetup group and Harley was able to come with as he had Thursday off. We socialized in asl for most of it but in the end we played the card game I made which everyone seems to enjoy.
Friday night was the monthly coffee night at Starbucks in Bellevue with the BCC Silent Voices ASL club. Just about our entire meetup group was there so it was a fantastic time! In fact, so many people I know go there now that I do not even get a chance to visit with everyone and the time really flies! I went to the first one this summer and only knew 2 people at first. Initially I felt kind of intimidated because my signing skill was slower then and they were having a fluent conversation. Now it is hard to talk to everyone I know because there are so many people! Afterward the group gravitates to the Cheesecake Factory but I wanted to get home before Harley went to bed and as much as I love cheesecake I felt that in the present situation I should pass (I had already had too many treats for the day).
Tuesday night Melody came over to study ASL level 3 vocabulary. This was our first study session and next week we are having two more people come over to my house. All three of them are taking ASL level 3 at Bellevue Community College this quarter and want to transfer to the interpreter program at Seattle Central Community College next year.
Seattle Central Community College is the only state funded school here that offers asl classes beyond level 3 because they are the only school in western washington that offers a two year degree in deaf studies or interpreter training. I have had up to level 4 but I could not continue last quarter with level 5 because of my symptoms and vision problems from the tumor swelling. The classes must be taken in a series and are only offered one time a year.
Anyhow, I have all the vocabulary video tapes for asl 4-6. So I made asl card games based on the vocabulary from asl 4 for our weekly meetup group. On Tuesday nights, Melody, Laura, and Diane are coming over to review the vocabulary and practice. This is good for me because without using or motivating myself to practice, I forget some of my vocabulary.
Wednesday night was our regular meetup group and Harley was able to come with as he had Thursday off. We socialized in asl for most of it but in the end we played the card game I made which everyone seems to enjoy.
Friday night was the monthly coffee night at Starbucks in Bellevue with the BCC Silent Voices ASL club. Just about our entire meetup group was there so it was a fantastic time! In fact, so many people I know go there now that I do not even get a chance to visit with everyone and the time really flies! I went to the first one this summer and only knew 2 people at first. Initially I felt kind of intimidated because my signing skill was slower then and they were having a fluent conversation. Now it is hard to talk to everyone I know because there are so many people! Afterward the group gravitates to the Cheesecake Factory but I wanted to get home before Harley went to bed and as much as I love cheesecake I felt that in the present situation I should pass (I had already had too many treats for the day).
Wednesday, April 13, 2005
First Hike With TSNW
TSNW - meaning "Team Survivor Northwest" which is an organization of women cancer patients and survivors. The group has a plethora of activities to become involved in (many of which I wanted to participate in but had no time to during graduate school).
Check out their webpage at: http://www.teamsurvivornw.org/
Their hiking program just started up again for the season so I decided to join as I can no longer hike by myself due to my balance difficulties. Today we went to De Leo Wall and the Coal Creek Falls Trail.
http://www.wnps.org/cps/walks/april_walk2.html
It was a really easy going hike and all the ladies I met were very nice. Next week we are going to Little Si which is the mountain trail I have hiked twice so far this year.
Each week the hikes will get a little more challenging in length, elevation, and terrain.
Check out their webpage at: http://www.teamsurvivornw.org/
Their hiking program just started up again for the season so I decided to join as I can no longer hike by myself due to my balance difficulties. Today we went to De Leo Wall and the Coal Creek Falls Trail.
http://www.wnps.org/cps/walks/april_walk2.html
It was a really easy going hike and all the ladies I met were very nice. Next week we are going to Little Si which is the mountain trail I have hiked twice so far this year.
Each week the hikes will get a little more challenging in length, elevation, and terrain.
Monday, April 11, 2005
CRAVINGS
It has now been a week and 5 days that I have been on 4mg of the decadron (steroids). Although it makes me feel much better, within a week it can cause one to become quite ravenous (ESPECIALLY IN THE EVENING AROUND 10 OR 11 PM).
Maybe it is because for so long I did not really feel like eating or because a decreased saliva production sometimes caused me difficulty when swallowing, but boy I sure enjoyed eating last week. Just the feeling of something going down my throat without a problem was grand! I have to admit that I had one day where I sort of lost control and binged.
While off the medicine I lost my taste for sweet things for a long time and wondered if I would ever enjoy chocolate again. Well just in time for the after easter candy sales it has returned and I must confide in you that I have been having a piece if chocolate everyday! (compliments of the Cadbury company that produces these fine delicacies only once a year) I have pretty much kept it in control and only had a few pieces but Saturday I kind of lost my senses. I had stumbled upon some chocolate covered pretzels on sale and could not stop eating them! At first it felt great! But then I went outside to do the poop duty and I was really disoriented and light headed. I think I must have had some kind of sugar rush and crashed.
I have also been eating 3 meals a day which does not always happen when I am off medicine. Today I checked the scale and noticed that I went up a couple pounds so I am definitely going to have to be more cautious. This past summer I had gained 12 lbs when I took the decadron the second time around. This is the second time I have taken it again as I was off for the months of October through December and started a different steriod called Prednisone in late December and January.
So word to the wise if any of you reading will need to take Decadron.......it causes cravings and for you to become very hungry within a week of taking it. Once you taper things should go back to normal. So the first couple weeks you need to eat lots of fruit and veggies and lay off carbs and sweets if you can. I taper on Thursday so hopefully this hunger nonsence will stop.
Maybe it is because for so long I did not really feel like eating or because a decreased saliva production sometimes caused me difficulty when swallowing, but boy I sure enjoyed eating last week. Just the feeling of something going down my throat without a problem was grand! I have to admit that I had one day where I sort of lost control and binged.
While off the medicine I lost my taste for sweet things for a long time and wondered if I would ever enjoy chocolate again. Well just in time for the after easter candy sales it has returned and I must confide in you that I have been having a piece if chocolate everyday! (compliments of the Cadbury company that produces these fine delicacies only once a year) I have pretty much kept it in control and only had a few pieces but Saturday I kind of lost my senses. I had stumbled upon some chocolate covered pretzels on sale and could not stop eating them! At first it felt great! But then I went outside to do the poop duty and I was really disoriented and light headed. I think I must have had some kind of sugar rush and crashed.
I have also been eating 3 meals a day which does not always happen when I am off medicine. Today I checked the scale and noticed that I went up a couple pounds so I am definitely going to have to be more cautious. This past summer I had gained 12 lbs when I took the decadron the second time around. This is the second time I have taken it again as I was off for the months of October through December and started a different steriod called Prednisone in late December and January.
So word to the wise if any of you reading will need to take Decadron.......it causes cravings and for you to become very hungry within a week of taking it. Once you taper things should go back to normal. So the first couple weeks you need to eat lots of fruit and veggies and lay off carbs and sweets if you can. I taper on Thursday so hopefully this hunger nonsence will stop.
Sunday, April 10, 2005
What's For Dinner?
One thing that I really enjoy doing during this time of recovery when I feel well is exploring the culinary delights that I normally would not have the time for except maybe on a weekend.
For dinner this evening our menu was as such and I must say in the words of Ned Flanders (Homer Simpson's neighbor) that is was "scrumdillyumptous"!
Bear Creek clam chowder (in packet- add clams, milk, water) -with sourdough bread
Zatarain's New Orleans Cajun style spice mix for salmon cakes
My own concoction/version of stuffed mushrooms with long grain veggie rice topped with mozzarella cheese
Since returning from vacation and when feeling better, here are the other cuisines I have cooked up:
Mango Pepper (red and green) Chicken Fajitas cooked with fresh cilantro
Ground Turkey Meatballs cooked in a pressure cooker with stewed tomatoes, garlic, carrots, fresh cilantro, red pepper, tomato soup and mashed potatoes on the side
Clam Chowder
Oyster Stew
Keibasa sausage sauted with peppers and onion, baked beans, and Mexican rice added
Veggie Pizza (zucchini, red pepper, mushroom, onion, tomato)
Honey Wheat Pancakes with fresh strawberries and whipped cream
Applesauce Honey Wheat Pancakes
Potato and Egg Beater Frittata with mushroom and red pepper baked in the oven
Lemon Meriegn Pie
For dinner this evening our menu was as such and I must say in the words of Ned Flanders (Homer Simpson's neighbor) that is was "scrumdillyumptous"!
Bear Creek clam chowder (in packet- add clams, milk, water) -with sourdough bread
Zatarain's New Orleans Cajun style spice mix for salmon cakes
My own concoction/version of stuffed mushrooms with long grain veggie rice topped with mozzarella cheese
Since returning from vacation and when feeling better, here are the other cuisines I have cooked up:
Mango Pepper (red and green) Chicken Fajitas cooked with fresh cilantro
Ground Turkey Meatballs cooked in a pressure cooker with stewed tomatoes, garlic, carrots, fresh cilantro, red pepper, tomato soup and mashed potatoes on the side
Clam Chowder
Oyster Stew
Keibasa sausage sauted with peppers and onion, baked beans, and Mexican rice added
Veggie Pizza (zucchini, red pepper, mushroom, onion, tomato)
Honey Wheat Pancakes with fresh strawberries and whipped cream
Applesauce Honey Wheat Pancakes
Potato and Egg Beater Frittata with mushroom and red pepper baked in the oven
Lemon Meriegn Pie
Hey Guess What? - Today marks my 12 year lease on life!
ok this will be real quick because I have to go run some errands right now. I will write more about this later tonight.
I AM PROUD TO ANNOUNCE THAT TODAY IS A MOMENTOUS OCCASSION AS IT IS MY 12 YEAR REMISSION DATE OF BEING CANCER FREE! My last chemotherapy treatment was ironically on Good Friday back on April 9th, 1993 for treatment of Hodgkin's Lymphoma.
I came upon this realization after I finished my recent blog entries last night and was thinking while I went to bed. I have done alot of reflecting about it but I have to go right now. I am just really excited and happy to have been alive for another 12 years! They have been wonderful years and I feel truely blessed. I would not have met my very dear husband, explored the world, or had the opportunity to form the meaningful friendships and bonds I have made had I not survived. Thank you everyone! You have really enhanced my life and I must say that I am really in love with this world and attached to the people in it. I really like my life.
I AM PROUD TO ANNOUNCE THAT TODAY IS A MOMENTOUS OCCASSION AS IT IS MY 12 YEAR REMISSION DATE OF BEING CANCER FREE! My last chemotherapy treatment was ironically on Good Friday back on April 9th, 1993 for treatment of Hodgkin's Lymphoma.
I came upon this realization after I finished my recent blog entries last night and was thinking while I went to bed. I have done alot of reflecting about it but I have to go right now. I am just really excited and happy to have been alive for another 12 years! They have been wonderful years and I feel truely blessed. I would not have met my very dear husband, explored the world, or had the opportunity to form the meaningful friendships and bonds I have made had I not survived. Thank you everyone! You have really enhanced my life and I must say that I am really in love with this world and attached to the people in it. I really like my life.
Inspirational Readings
This will be quick as I have to get to bed.
I am finishing one of two great books that my mother has sent me. Both books and authors are very good.
The book that I have finished reading is "Anyway: The Paradoxical Commandments - Finding Personal Meaning in a Crazy World" by Kent Keith.
Here are a few of my favorite paradoxical commandments:
"People are illogical, unreasonable, and self centered. LOVE THEM ANYWAY."
"The biggest men and women with the biggest ideas can be shot down by the smallest men and women with the smallest minds. THINK BIG ANYWAY."
The one I am currently reading is "In The Spirit" by Susan Taylor.
Here are a few quotes that really stood out in mind:
"We aren't happy because we are healthy, we're healthy because we are happy."
"Having faith does not mean sitting back and waiting for miracles. LIFE is the miracle. YOU are the miracle."
"Our biggest problems in life come not so much from the difficulties we confront but from how we perceive and respond to them ."
I also enjoy "Simple Abundance: A Daybook of Comfort and Joy" by Sarah Ben Breathnach which is a marvelous daily read and motivator!
I am finishing one of two great books that my mother has sent me. Both books and authors are very good.
The book that I have finished reading is "Anyway: The Paradoxical Commandments - Finding Personal Meaning in a Crazy World" by Kent Keith.
Here are a few of my favorite paradoxical commandments:
"People are illogical, unreasonable, and self centered. LOVE THEM ANYWAY."
"The biggest men and women with the biggest ideas can be shot down by the smallest men and women with the smallest minds. THINK BIG ANYWAY."
The one I am currently reading is "In The Spirit" by Susan Taylor.
Here are a few quotes that really stood out in mind:
"We aren't happy because we are healthy, we're healthy because we are happy."
"Having faith does not mean sitting back and waiting for miracles. LIFE is the miracle. YOU are the miracle."
"Our biggest problems in life come not so much from the difficulties we confront but from how we perceive and respond to them ."
I also enjoy "Simple Abundance: A Daybook of Comfort and Joy" by Sarah Ben Breathnach which is a marvelous daily read and motivator!
The "Haircut"
A couple days before the vacation I decided it was time for a trim. I don't like getting my haircut and I probably only get it cut twice a year. The last time I had a trim was before a major holiday again which was either Thanksgiving or Christmas.
It is interesting to get your haircut when you are deaf because normally beauticians ask you lots of questions and yak up a storm. When you are deaf however, none of this can happen. I told the woman that I was deaf and that I just wanted a trim. She showed me the length of what she intended to cut off which was fine for me because I wanted to get rid of the scraggly ends.
At one point she noticed this tuft of hair in front just sticking out that did not match the rest of my hair which was all one length. I told her that I had radiation treatment which caused me t0 go bald in that spot (the size of a quarter). Now that it had grown back in, I did not know what to do with it (now about 2-3 inches in length). I had lost hair in two other spots but they are further back on my head and the rest of my hair seems to cover it.
So the beautician gets this wild idea of giving me bangs which I have not had since the late 80s back in high school with the "poodle" do. LOL I really had no idea what I would look like with bangs and I did not feel like doing any thinking about it. I just said "ok' and hoped that she could do something fantastic for me like on one of those makeover shows. She also wanted to change the sides and make them frame my face. I was a little hesitant about that but again I complied.
Well it turns out that I think it was a bad haircut. Harley did not really like it and the way that she cut my hair seems to accentuate my now very rounded "pumpkin" face. LOVELY! I really did not know what to do with it. I went on vacation and had planned to dye my hair hoping that it would help somewhat. I had bought "Macadamia" which is light natural blonde because it was on sale at Albertson's.
However, my mother had bought some hair dye for me (how did she know I was going to dye my hair????) and brought it with to Oregon. The color was a darker shade called "hot cocoa or hot chocolate". I had a hard time deciding what to do so we flipped a coin. LOL The hot chocolate was on!
By the last day in Oregon I think I finally figured out a way to style my hair that was more my style. It looks kind of cute when I have my hair in a pony tail but I definitely do not like the bangs when my hair is down. So I try to style them over to the side and blend it in with my long hair to make it kind of look like it was before. After awhile though those dang bangs come down or stick in directions I do not like. So it looks like I will be letting them grow out and not have them trimmed with my next haircut.
This is the result when you are thrifty (try to find a cheap place) and you do not fully understand what the beautician is asking you. Next time I will have to bring in some magazine photo and tell the person that is how I want my haircut. It is an adjustment going deaf and takes awhile to figure these things out.
It is interesting to get your haircut when you are deaf because normally beauticians ask you lots of questions and yak up a storm. When you are deaf however, none of this can happen. I told the woman that I was deaf and that I just wanted a trim. She showed me the length of what she intended to cut off which was fine for me because I wanted to get rid of the scraggly ends.
At one point she noticed this tuft of hair in front just sticking out that did not match the rest of my hair which was all one length. I told her that I had radiation treatment which caused me t0 go bald in that spot (the size of a quarter). Now that it had grown back in, I did not know what to do with it (now about 2-3 inches in length). I had lost hair in two other spots but they are further back on my head and the rest of my hair seems to cover it.
So the beautician gets this wild idea of giving me bangs which I have not had since the late 80s back in high school with the "poodle" do. LOL I really had no idea what I would look like with bangs and I did not feel like doing any thinking about it. I just said "ok' and hoped that she could do something fantastic for me like on one of those makeover shows. She also wanted to change the sides and make them frame my face. I was a little hesitant about that but again I complied.
Well it turns out that I think it was a bad haircut. Harley did not really like it and the way that she cut my hair seems to accentuate my now very rounded "pumpkin" face. LOVELY! I really did not know what to do with it. I went on vacation and had planned to dye my hair hoping that it would help somewhat. I had bought "Macadamia" which is light natural blonde because it was on sale at Albertson's.
However, my mother had bought some hair dye for me (how did she know I was going to dye my hair????) and brought it with to Oregon. The color was a darker shade called "hot cocoa or hot chocolate". I had a hard time deciding what to do so we flipped a coin. LOL The hot chocolate was on!
By the last day in Oregon I think I finally figured out a way to style my hair that was more my style. It looks kind of cute when I have my hair in a pony tail but I definitely do not like the bangs when my hair is down. So I try to style them over to the side and blend it in with my long hair to make it kind of look like it was before. After awhile though those dang bangs come down or stick in directions I do not like. So it looks like I will be letting them grow out and not have them trimmed with my next haircut.
This is the result when you are thrifty (try to find a cheap place) and you do not fully understand what the beautician is asking you. Next time I will have to bring in some magazine photo and tell the person that is how I want my haircut. It is an adjustment going deaf and takes awhile to figure these things out.
Sorry for the absence
For those of you following along, the last I left you is when I had returned from vacationing in Oregon back in March. I informed you that I was sick again.
Fortunately I have a great doctor here who gets back to me right away via email. I was really sick on that Wednesday so Harley gave him a call and he agreed to quickly remedy my suffering and approve another course of steroids that I started that day.
It took a few days for it to fully take affect and I missed my walks most of the week and slept alot but I am doing good now.
Unfortunately after that occured, the dang computer became locked up on me! I had plans to catch up on the blog but I could not even connect to the internet. It says my computer is infected with spyware and adware but I have to connect to the internet to fix the problem. I have to admit that I still have to fix the problem. I have been too frustrated to do so.
I have been borrowing Harley's laptop intermitently to check email but I admit that I have a horrible time trying to type on this tiny keyboard. I finally am starting to get used to it and have enough flow to write some emails and create a few posts here. Normally I use an ergonomic keyboard which is much easier as my hands do not coordinate so well anymore since treatment (difficulty manipulating small things such as necklace clasps, openning zip lock bags, tying ribbon or string, typing, etc.).
But I am here and I am okay now. I restarted the steroids on March 30th for another month. This thursday I will again restart a taper down to 2 mg a day. The last time I tapered I had headaches so I am hoping it will not happen this time. After thursday I will take 2 mg a day for two weeks and stop and then we will see how my body responds.
I found a picture of me after my first cyberknife treatment. My face was definitely alot smaller even though my weight was higher. You can see dimples slightly on either side of my face which are definitely gone now. The steroids have made my face more round and what I refer to as "chipmunk-like". I don't care for it much but it evens out the wrinkles and sure the heck beats having bad headaches, throwing up, and not being able to get out of bed.
Fortunately I have a great doctor here who gets back to me right away via email. I was really sick on that Wednesday so Harley gave him a call and he agreed to quickly remedy my suffering and approve another course of steroids that I started that day.
It took a few days for it to fully take affect and I missed my walks most of the week and slept alot but I am doing good now.
Unfortunately after that occured, the dang computer became locked up on me! I had plans to catch up on the blog but I could not even connect to the internet. It says my computer is infected with spyware and adware but I have to connect to the internet to fix the problem. I have to admit that I still have to fix the problem. I have been too frustrated to do so.
I have been borrowing Harley's laptop intermitently to check email but I admit that I have a horrible time trying to type on this tiny keyboard. I finally am starting to get used to it and have enough flow to write some emails and create a few posts here. Normally I use an ergonomic keyboard which is much easier as my hands do not coordinate so well anymore since treatment (difficulty manipulating small things such as necklace clasps, openning zip lock bags, tying ribbon or string, typing, etc.).
But I am here and I am okay now. I restarted the steroids on March 30th for another month. This thursday I will again restart a taper down to 2 mg a day. The last time I tapered I had headaches so I am hoping it will not happen this time. After thursday I will take 2 mg a day for two weeks and stop and then we will see how my body responds.
I found a picture of me after my first cyberknife treatment. My face was definitely alot smaller even though my weight was higher. You can see dimples slightly on either side of my face which are definitely gone now. The steroids have made my face more round and what I refer to as "chipmunk-like". I don't care for it much but it evens out the wrinkles and sure the heck beats having bad headaches, throwing up, and not being able to get out of bed.
Sleep Disturbance
One may woneder why I am up blogging at the moment. One of the side effects of taking the steroid decadron is that it greatly disrupts your sleep pattern and makes you become somewhat manic. I told my mother about it yesterday and she requested that I create an entry in my blog so that others who may need to take decadron may know what to expect.
Pretty much when I am on the full dose of 4 mg a day I get between 3 to 5 hours of sleep. It really varies. With the diamox I have to use the restroom alot so sometimes I wake up every hour to 2 hours. It seems common for me to either wake at 3 in the morning and not be able to go back to sleep or lie down at midnight or 1 am and awake for the day at 4 or 4:30 am and require in hour or two nap in the midmorning or early afternoon.
Friday evening I fell asleep probaby around 11 or 11:30 pm. Then I awoke at 1:30 am and I don't think I went back to bed until 4 or 4:30 am. Then I awoke for the day on Saturday morning about 7:30 am and required a nap from 11 am to noon.
Just this evening I fell asleep on the couch after watching a netflix at about 11:30 pm. I woke up at 1 or 1:30 am and here I am again. I will try to lie back down and get some sleep. Sometimes it is hard to go back to sleep and my mind is rapidly turning with ideas and thoughts about everything I need to accomplish for the day. It is like when you are a kid on the night prior to the first day of school and you cannot sleep. Sometimes I lie there for a few hours and finally get to sleep in the wee hours of the morning (between 5 or 7 am).
I like having the motivation when on the steroids but it is frustrating not to get consistent and adequate sleep. When I taper off the medicine this pattern makes me extremely fatigued and I could sleep all day once the medicine is stopped.
By the way, that is what happened when I got back from vacation. I finished the medicine on a Monday and lied around in my pajamas and slept all day. I did the same on Tuesday and by Wednesday I became very sick again and needed to get a new prescription of the steroids from my doctor so I could function (I had a bad migrane that tylenol would not remedy, increased crainal pressure, was vomiting again, had vertigo, serious imbalance, and double vision again).
Pretty much when I am on the full dose of 4 mg a day I get between 3 to 5 hours of sleep. It really varies. With the diamox I have to use the restroom alot so sometimes I wake up every hour to 2 hours. It seems common for me to either wake at 3 in the morning and not be able to go back to sleep or lie down at midnight or 1 am and awake for the day at 4 or 4:30 am and require in hour or two nap in the midmorning or early afternoon.
Friday evening I fell asleep probaby around 11 or 11:30 pm. Then I awoke at 1:30 am and I don't think I went back to bed until 4 or 4:30 am. Then I awoke for the day on Saturday morning about 7:30 am and required a nap from 11 am to noon.
Just this evening I fell asleep on the couch after watching a netflix at about 11:30 pm. I woke up at 1 or 1:30 am and here I am again. I will try to lie back down and get some sleep. Sometimes it is hard to go back to sleep and my mind is rapidly turning with ideas and thoughts about everything I need to accomplish for the day. It is like when you are a kid on the night prior to the first day of school and you cannot sleep. Sometimes I lie there for a few hours and finally get to sleep in the wee hours of the morning (between 5 or 7 am).
I like having the motivation when on the steroids but it is frustrating not to get consistent and adequate sleep. When I taper off the medicine this pattern makes me extremely fatigued and I could sleep all day once the medicine is stopped.
By the way, that is what happened when I got back from vacation. I finished the medicine on a Monday and lied around in my pajamas and slept all day. I did the same on Tuesday and by Wednesday I became very sick again and needed to get a new prescription of the steroids from my doctor so I could function (I had a bad migrane that tylenol would not remedy, increased crainal pressure, was vomiting again, had vertigo, serious imbalance, and double vision again).
A wonderfully delicious and MARVELOUS treat!
The past 4 mornings I have discovered for myself the fabulous world of making ones own fruit shakes. The shakes taste marvelous and are a good and nutritious way to get in your dairy and fruit requirement for the day. It is a good high power way to start the morning. I highly recommend them to anyone who is going through radiation, chemo, a soft foods only restriction, has swallowing difficulty, is on a diet, or anyone who just plain enjoys the taste of fruit shakes.
This morning I made myself a peach strawberry but the other three mornings I was thoroughly delighted in my peach mango concoction. Here is a sort of recipe that I whipped up:
One whole ripe mango skinned and sliced
One to one half cup of fat free frozen peach yogurt (I used Safeway brand)
1/4 cup of skim milk or whatever seems a good amount
1/4 cup or few drops of raspberry cranberry juice cocktail
Blend the mango first and then add and mix the other ingredients in the blender
Voila! Hope you enjoy as much as I have!
This morning I made myself a peach strawberry but the other three mornings I was thoroughly delighted in my peach mango concoction. Here is a sort of recipe that I whipped up:
One whole ripe mango skinned and sliced
One to one half cup of fat free frozen peach yogurt (I used Safeway brand)
1/4 cup of skim milk or whatever seems a good amount
1/4 cup or few drops of raspberry cranberry juice cocktail
Blend the mango first and then add and mix the other ingredients in the blender
Voila! Hope you enjoy as much as I have!
Thursday, April 07, 2005
Third Visit to the Physical Therapist
Well I found out why I fell over from a sitting position and smashed my head against a large rock in the terraced rockerie next to our deck. I have a problem focusing on a fixed object when moving my head in any direction. Normally someone can move their head from side to side and their eyes can remain focused on a stationary object. I however cannot.
From what I can remember and understand, this is called my
VOR: Vestibular Ocular Reflex.
When I was putting refuse wood in the box on the deck I was quickly moving my head from side to side and shifting my focus from the ground to the box sitting on the side of the deck. Even though I was at a sitting position, I still got disoriented from moving my head and thus fell over without realizing it until after it happened.
The therapist thought there was some improvement in my face. We did the face exercises combined with marching in place to work on my multi-tasking skills. It is easy to just do the marching but much harder when trying to combine another activity on top of it. If I am marching on the foam pad and my attention is diverted and I started talking to someone, then I lose my balance. So when I do my activities, such as walking, hiking, or running, I have to keep my focus straight ahead and concentrate. If walking with someone who wants to communicate with me, I need to use my walking stick to keep me on track.
After the appointment I treated myself to a meditative visit to one of my very favorite places in Seattle: The volunteer park conservatory. I used to go there all the time after my bi-annual MRIs. The place is so fresh and serene. It has the ability to pull you away from the chaos of the world and to draw you in to the essence of nature. It is a place that is ideal for reflection and thought.
There are 5 rooms at the conservatory: 1) desert/cactus 2)bromelaid room 3)tropical rainforest/cycads 4) orchids/tropical 5) native and seasonal display
Right now the orchids are magnificent and their sweet aroma is intoxicating when you enter the room. Some of the most beautiful orchids I have ever seen are in bloom right now.
The daffodils must be finished there as their tulips were not quite open yet outside and inside. It will be beautiful inside the native display room when they open! Right now they have my favorite hydrangeas in bloom there. My next PT appointment is this Thursday at 4:30 pm so I will have to try to get down there early so I can visit the conservatory beforehand to check on the tulips!
From what I can remember and understand, this is called my
VOR: Vestibular Ocular Reflex.
When I was putting refuse wood in the box on the deck I was quickly moving my head from side to side and shifting my focus from the ground to the box sitting on the side of the deck. Even though I was at a sitting position, I still got disoriented from moving my head and thus fell over without realizing it until after it happened.
The therapist thought there was some improvement in my face. We did the face exercises combined with marching in place to work on my multi-tasking skills. It is easy to just do the marching but much harder when trying to combine another activity on top of it. If I am marching on the foam pad and my attention is diverted and I started talking to someone, then I lose my balance. So when I do my activities, such as walking, hiking, or running, I have to keep my focus straight ahead and concentrate. If walking with someone who wants to communicate with me, I need to use my walking stick to keep me on track.
After the appointment I treated myself to a meditative visit to one of my very favorite places in Seattle: The volunteer park conservatory. I used to go there all the time after my bi-annual MRIs. The place is so fresh and serene. It has the ability to pull you away from the chaos of the world and to draw you in to the essence of nature. It is a place that is ideal for reflection and thought.
There are 5 rooms at the conservatory: 1) desert/cactus 2)bromelaid room 3)tropical rainforest/cycads 4) orchids/tropical 5) native and seasonal display
Right now the orchids are magnificent and their sweet aroma is intoxicating when you enter the room. Some of the most beautiful orchids I have ever seen are in bloom right now.
The daffodils must be finished there as their tulips were not quite open yet outside and inside. It will be beautiful inside the native display room when they open! Right now they have my favorite hydrangeas in bloom there. My next PT appointment is this Thursday at 4:30 pm so I will have to try to get down there early so I can visit the conservatory beforehand to check on the tulips!
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