Becky's sister Michelle here with an update before the surgery:
We're counting down the minutes until it's Becky's turn to go into the operating room. So far, things have gone smoothly. There were a few wrong turns getting to the hospital at 6:00 this morning so we took the scenic route despite the GPS sytem 'Lola'. Once we got here, the process of just getting ready for surgery has been long, but Becky (as always) has remained in great spirits! I think she's ready to make sure the "evil twins" (what she calls the two large tumors at the back of her head) can't do any more damage to her brainstem and are put in their place... (a research lab! I'm sure she'll post more about that later.) As a family, we're very grateful to everyone who has played a role in helping Becky in her journey. The Odyssey continues and we're learning more everyday about ourselves and NF2, and we're ever more grateful to have Rebecca in our lives. Her fierce determination and will, wonderful spirit, and strength are great reminders of how to truly live and enjoy life to its fullest. Please keep her in your thoughts as she faces yet another challege head-on! Thanks everyone and I'll get another short update out when all systems are go!
Monday, September 24, 2007
Sunday, September 23, 2007
Where will the tumor go?
One last quick note-
What will become of the tumor tissue once it is removed?
On short notice we were able to still make immediate arrangements for it to be tranfered to Coriell Cell Repositories in New Jersey. There, the cells will be cryogenized (frozen) and catalogued as the 7th NF2 tumor sample of their collection. Because NF2 is a rare disorder there is not a surplus of tissue cells for research. Therefore, they are currently in search of NF2 and schwannoma tumors. Once preserved, the cells will be available for use by any researcher in the world looking for the missing link to cure NF2.
For those who don't know, the founder Dr. Lewis Coriell played a part in bringing the first polio vaccine to the public in 1940. Click on the lighthouse link to learn about the Coriell Institute and what other research they are conducting and specimens in need of donation for their collection.
What will become of the tumor tissue once it is removed?
On short notice we were able to still make immediate arrangements for it to be tranfered to Coriell Cell Repositories in New Jersey. There, the cells will be cryogenized (frozen) and catalogued as the 7th NF2 tumor sample of their collection. Because NF2 is a rare disorder there is not a surplus of tissue cells for research. Therefore, they are currently in search of NF2 and schwannoma tumors. Once preserved, the cells will be available for use by any researcher in the world looking for the missing link to cure NF2.
For those who don't know, the founder Dr. Lewis Coriell played a part in bringing the first polio vaccine to the public in 1940. Click on the lighthouse link to learn about the Coriell Institute and what other research they are conducting and specimens in need of donation for their collection.
Saturday, September 22, 2007
Super Saturday (2 days pre-op)
Today was absolutely magnificent! It was one of the best birthdays I think I ever had. Again the weather was gorgeous at the beach so much so that it was sad for us to leave. All good vacations come to an end and it is always good for them to end on a good note so there is an excuse to go back.
The ride to Portland from the coast is so pretty! The road meanders along a pleasant country creek with twists and turns and moss clad deciduous trees clustered on the road side and along the bed of the creek. In between the tree shaded sections all of sudden pops out rolling pastures and hills with quaint little farms and cozy country cabins. Every once in a while you will see a cute little country church as if it stepped out of a Little House on the prarie episode. Gosh I love that romantic nostalgia! It is like being in a storybook. Both the countryside farms and rural churches are a dying breed that I truly appreciate being able to still witness in the era of modernism.
Our countryside drive could not have been better on the opening day of fall. Even down in Oregon we had some nice color gracing the leaves which glistened beautifully in the sunlight.
Around 4 pm we met up with my family to celebrate my 36th birthday. Just as we have been blessed with the most amazing September weather on the coast, the same was for Portland. I don't why I have been so fortunate and blessed! It has been such a great week down here that I don't want it to end or the vacation to come to a close.
At my brother and his wife's where we also met up with my sister and mom and dad, we started out the celebration with an apartment full of balloons and a beautiful floral bouquet. After visiting we decided to try out something new and to explore the culinary tastes of Lebanon at the Karma Lebanese restaurant. We were not sure what would be on the menu but as soon as I saw couscous, chicken, spinach, and hummus I knew we picked a good spot. The food and decor shared a similarity to Greek which we really like. The dinner, ambience, and company made for a wonderful birthday celebration. It has been a couple years since my whole family has been able to be together all at the same time so it was even more special.
After dinner headed back to my brother's where we enjoyed our traditional dairy queen ice cream cake (does not last long in our family....it is almost gone already), wearing funky and silly halloween embelishments and taking photos, and opening my presents. I got some great books and also a very nice zipper hoody and fleece pants from REI to wear home after the surgery. It was a very fun evening and thank you Harley, Michelle, Scott, Denise, and mom and dad for helping me celebrate and make it special!
We are now at the Comfort Suites where they offer discounts to OHSU patients and families. The rooms are very nice (much nicer than what was available and the price when we went to Stanford in 2004 and stayed in Palo Alto, CA). Mom and dad and Harley and I are staying here. Michelle is staying with Scott and Denise.
Tomorrow our friend KC (who came with us and his wife Dianne to my cyberknife treatment in 2004) will meet us in Portland. He is taking the Amtrak and we will pick him up from the train station at 6 pm. Tomorrow is the last day for us all to spend together before the brain surgery. It will be an early evening as I have to be at the hospital at 5:30 am on Monday. I am scheduled for 6 am but that means I will be sent to put on the gown and get ready. I need to get there a half hour earlier to first know where we need to go and then to spend some moments with my family.
Tomorrow will probably be pretty busy so this is most likely the last I will write until I am recovered. Thanks again everyone for your love, encouragement, help, prayers, humor, and belief in me! I could not have reached this point without all of you. Thank you for being by my
side! I feel very comforted and very prepared. I'll see you on the other end!
Love, Beck
The ride to Portland from the coast is so pretty! The road meanders along a pleasant country creek with twists and turns and moss clad deciduous trees clustered on the road side and along the bed of the creek. In between the tree shaded sections all of sudden pops out rolling pastures and hills with quaint little farms and cozy country cabins. Every once in a while you will see a cute little country church as if it stepped out of a Little House on the prarie episode. Gosh I love that romantic nostalgia! It is like being in a storybook. Both the countryside farms and rural churches are a dying breed that I truly appreciate being able to still witness in the era of modernism.
Our countryside drive could not have been better on the opening day of fall. Even down in Oregon we had some nice color gracing the leaves which glistened beautifully in the sunlight.
Around 4 pm we met up with my family to celebrate my 36th birthday. Just as we have been blessed with the most amazing September weather on the coast, the same was for Portland. I don't why I have been so fortunate and blessed! It has been such a great week down here that I don't want it to end or the vacation to come to a close.
At my brother and his wife's where we also met up with my sister and mom and dad, we started out the celebration with an apartment full of balloons and a beautiful floral bouquet. After visiting we decided to try out something new and to explore the culinary tastes of Lebanon at the Karma Lebanese restaurant. We were not sure what would be on the menu but as soon as I saw couscous, chicken, spinach, and hummus I knew we picked a good spot. The food and decor shared a similarity to Greek which we really like. The dinner, ambience, and company made for a wonderful birthday celebration. It has been a couple years since my whole family has been able to be together all at the same time so it was even more special.
After dinner headed back to my brother's where we enjoyed our traditional dairy queen ice cream cake (does not last long in our family....it is almost gone already), wearing funky and silly halloween embelishments and taking photos, and opening my presents. I got some great books and also a very nice zipper hoody and fleece pants from REI to wear home after the surgery. It was a very fun evening and thank you Harley, Michelle, Scott, Denise, and mom and dad for helping me celebrate and make it special!
We are now at the Comfort Suites where they offer discounts to OHSU patients and families. The rooms are very nice (much nicer than what was available and the price when we went to Stanford in 2004 and stayed in Palo Alto, CA). Mom and dad and Harley and I are staying here. Michelle is staying with Scott and Denise.
Tomorrow our friend KC (who came with us and his wife Dianne to my cyberknife treatment in 2004) will meet us in Portland. He is taking the Amtrak and we will pick him up from the train station at 6 pm. Tomorrow is the last day for us all to spend together before the brain surgery. It will be an early evening as I have to be at the hospital at 5:30 am on Monday. I am scheduled for 6 am but that means I will be sent to put on the gown and get ready. I need to get there a half hour earlier to first know where we need to go and then to spend some moments with my family.
Tomorrow will probably be pretty busy so this is most likely the last I will write until I am recovered. Thanks again everyone for your love, encouragement, help, prayers, humor, and belief in me! I could not have reached this point without all of you. Thank you for being by my
side! I feel very comforted and very prepared. I'll see you on the other end!
Love, Beck
Friday, September 21, 2007
Peace and Reflection Friday - 3 days pre-op
I can see why writer's frequently come to the shore to open the mind for inspiration, creative thought and positive energy. Today was such a day for me. The warm sun and cool ocean breezes and backdrop of the crashing waves on the shore invited me outside to take in some enlightening reading.
It was a perfect way for me to again put things into perspective, seek meaning, and complete my peaceful meditative state for continuing the journey (my odyssey) which lay ahead.
My reflection and reading this afternoon is important so I would like to share it with you here.
The following is from the book "Meeting God At a Dead End" by Ron Mehl published by Multnohah Books of Sisters, Oregon.
The passage (cited by Paul) found on page 127 is taken from 2 Corinthians 4:15-18
"For all things are for your sakes, that grace, having spread through the many, may cause thanksgiving to abound to the glory of God. Therefore we do not lose heart. Even though our outward man is perishing, yet the inward man is being renewed day by day. For our light affliction, which is but for a moment, is working for us a far more exceeding and eternal weight of glory, while we do not look at the things which are seen, but at the things which are not seen. For the things which are seen are temporary, but the things which are not seen are eternal."
In the early evening while the sun was still high, Harley and I took a walk down the beach heading south this time. I wanted to revisit Bob Straub state park which we first encountered over 4 years ago and has been the inspiration of the calming ambience I have been working on creating in our bedroom. We were very taken with this stretch of beach upon our first initial discovery and took beautiful scenic pictures which I have framed in our room.
For Harley, achieving this mental release and peaceful state is new. There are many frustrations and stress when a loved one is faced with medical situation. It can be even more difficult and emotionally draining for loved ones than it is for the person with the medical crisis. The goal of the walk was to release all the worries from the mind and take in all the senses and to appreciate them and reach a state of well being. I have been working to acheive this state for many months and even praticed prior over the years. My plan was to walk on top of the sand dunes among the dune grass on a new and undiscovered route to fulfill my delight of exploration. Harley's choice was to walk barefoot along the beach once he reached a state of destressing. We would meet on the beach within a half hour.
It went wonderfully. By the time we met the sun was begining to set and we were able to sit and converse with the backdrop of the powerful crashing waves and the tickle of light leading across the water from us to the sun. On the walk back the sunset became even more glorius! It was perfect, sureal, and like a dream. As it slipped over the horizon, the play the sun's rays colored the gentle clouds overhead pastels of pink, yellow and lavender among a faint blue sky.
I had more nerve attacks to my face today (3 in total) but due to my relaxation and destressing I was able to continue whatever I was doing (conversing, cooking dinner, etc.). The first time was very scary and painful last week but when theycome I try to detach my mind from the pain in my face knowing that it will subside in a matter of time and I will go on.
It was a perfect way for me to again put things into perspective, seek meaning, and complete my peaceful meditative state for continuing the journey (my odyssey) which lay ahead.
My reflection and reading this afternoon is important so I would like to share it with you here.
The following is from the book "Meeting God At a Dead End" by Ron Mehl published by Multnohah Books of Sisters, Oregon.
The passage (cited by Paul) found on page 127 is taken from 2 Corinthians 4:15-18
"For all things are for your sakes, that grace, having spread through the many, may cause thanksgiving to abound to the glory of God. Therefore we do not lose heart. Even though our outward man is perishing, yet the inward man is being renewed day by day. For our light affliction, which is but for a moment, is working for us a far more exceeding and eternal weight of glory, while we do not look at the things which are seen, but at the things which are not seen. For the things which are seen are temporary, but the things which are not seen are eternal."
In the early evening while the sun was still high, Harley and I took a walk down the beach heading south this time. I wanted to revisit Bob Straub state park which we first encountered over 4 years ago and has been the inspiration of the calming ambience I have been working on creating in our bedroom. We were very taken with this stretch of beach upon our first initial discovery and took beautiful scenic pictures which I have framed in our room.
For Harley, achieving this mental release and peaceful state is new. There are many frustrations and stress when a loved one is faced with medical situation. It can be even more difficult and emotionally draining for loved ones than it is for the person with the medical crisis. The goal of the walk was to release all the worries from the mind and take in all the senses and to appreciate them and reach a state of well being. I have been working to acheive this state for many months and even praticed prior over the years. My plan was to walk on top of the sand dunes among the dune grass on a new and undiscovered route to fulfill my delight of exploration. Harley's choice was to walk barefoot along the beach once he reached a state of destressing. We would meet on the beach within a half hour.
It went wonderfully. By the time we met the sun was begining to set and we were able to sit and converse with the backdrop of the powerful crashing waves and the tickle of light leading across the water from us to the sun. On the walk back the sunset became even more glorius! It was perfect, sureal, and like a dream. As it slipped over the horizon, the play the sun's rays colored the gentle clouds overhead pastels of pink, yellow and lavender among a faint blue sky.
I had more nerve attacks to my face today (3 in total) but due to my relaxation and destressing I was able to continue whatever I was doing (conversing, cooking dinner, etc.). The first time was very scary and painful last week but when theycome I try to detach my mind from the pain in my face knowing that it will subside in a matter of time and I will go on.
Tranquil Thursday
From "Beaches" by Gideon Bosker and Lena Lenzek -
"Beach bums from infancy, there could only be one place with the power to rock the soul and feed the heart- and that place was and continues to be, the beach."
I had mentioned before about my quest for a peaceful meditative state for my mind to reach upon approaching the surgery. I have always loved being surrounded by nature in many forms but what ignites my passion is water's seductive lure and most notably the mystique of the ocean. There is just something about the flow of water and waves that is hypotic and calms the mind. So naturally, it has been my desire to somehow return to that place in my being and preserve the warm comforting feeling water creates for me for when I most need it. As you know, I made 2 trips to the ocean since July and we are lucky enough to visit it again the week leading up to the surgery.
I can think of nothing more perfect. It is like a dream. I have attained what I was hoping for in mental relaxation prior to facing something I found impossible to bear.
The day was absolutely fantastic. My soul has been nurtured and soothed. It is a dream like I have told you.
Short synopsis:
kicked off our shoes and played frisbee in the sand and the afternoon sun
had conversation of our future with the glorious backdrop of the pounding waves on the beach
frolicked like a little girl dancing among the wet sand and teasing the ocean waves creeping after my feet (something I have only been able to do now after 3 years)
walking among the sand dunes observing all the patterns of the wind, grains of sand, different birds, and various footprints
observing all the little amphipods jumping out of the wet sand as we approached where the waves receded
petting a friendly dog also enjoying the evening at the beach
climbing a dune to get a better view of the waves, beach, and sunset
discovering rocks, shells, and a beautifully designed sand castle
watching pelicans fly overhead and seagulls walking among the beach
watching the powerful waves beat and splash against the rocks at Cape Kiwanda
observing stunning and delicate pink cloud formations overhead from the setting sun
sitting on top of the dune cliff watching the moon cast its light down on the water while the pink and lavendar sunset fades
taking a moonlit stroll back to the beach house in the misty light of dusk
cooking salmon and spinach salad with honey dew melon to close the day
I did have another trigeminal neuralgia attack while cooking dinner tonight. However, I achieved such a state of tranquility that I was able to keep calm and continue preparing our special meal. I am driven to not let it get the best of me. Tomorrow will be our last full day at this little slice of heaven. Saturday (my birthday), we head back to Portland to meet up with my family (sister flying in from Idaho, mom and dad driving up from Veneta near Eugene, my brother and sister in law in Portland). I am looking forward to seeing and spending some time with all of them for a couple days.
"Beach bums from infancy, there could only be one place with the power to rock the soul and feed the heart- and that place was and continues to be, the beach."
I had mentioned before about my quest for a peaceful meditative state for my mind to reach upon approaching the surgery. I have always loved being surrounded by nature in many forms but what ignites my passion is water's seductive lure and most notably the mystique of the ocean. There is just something about the flow of water and waves that is hypotic and calms the mind. So naturally, it has been my desire to somehow return to that place in my being and preserve the warm comforting feeling water creates for me for when I most need it. As you know, I made 2 trips to the ocean since July and we are lucky enough to visit it again the week leading up to the surgery.
I can think of nothing more perfect. It is like a dream. I have attained what I was hoping for in mental relaxation prior to facing something I found impossible to bear.
The day was absolutely fantastic. My soul has been nurtured and soothed. It is a dream like I have told you.
Short synopsis:
kicked off our shoes and played frisbee in the sand and the afternoon sun
had conversation of our future with the glorious backdrop of the pounding waves on the beach
frolicked like a little girl dancing among the wet sand and teasing the ocean waves creeping after my feet (something I have only been able to do now after 3 years)
walking among the sand dunes observing all the patterns of the wind, grains of sand, different birds, and various footprints
observing all the little amphipods jumping out of the wet sand as we approached where the waves receded
petting a friendly dog also enjoying the evening at the beach
climbing a dune to get a better view of the waves, beach, and sunset
discovering rocks, shells, and a beautifully designed sand castle
watching pelicans fly overhead and seagulls walking among the beach
watching the powerful waves beat and splash against the rocks at Cape Kiwanda
observing stunning and delicate pink cloud formations overhead from the setting sun
sitting on top of the dune cliff watching the moon cast its light down on the water while the pink and lavendar sunset fades
taking a moonlit stroll back to the beach house in the misty light of dusk
cooking salmon and spinach salad with honey dew melon to close the day
I did have another trigeminal neuralgia attack while cooking dinner tonight. However, I achieved such a state of tranquility that I was able to keep calm and continue preparing our special meal. I am driven to not let it get the best of me. Tomorrow will be our last full day at this little slice of heaven. Saturday (my birthday), we head back to Portland to meet up with my family (sister flying in from Idaho, mom and dad driving up from Veneta near Eugene, my brother and sister in law in Portland). I am looking forward to seeing and spending some time with all of them for a couple days.
Thursday, September 20, 2007
What Luck! Body Worlds 3 in Portland presented by OHSU
So our quest for peace, prespective, and harmony to getaway from surgery fears or see it in a different light has begun! I would truly recommend this to anyone to do prior to a major medical procedure if there is time and it is feasible. Make the time! I actually began this search in July but I do not think Harley had reached it yet as he became more high strung over the last week.
When we awoke we explored a little around the riverplace area in Portland near Dave and Christie's condo. In the morning paper we noticed that "Body Worlds" was actually on exhibit at the Oregon Museum of Science and Industry and is actually being presented by OHSU. How incredibly cool! I learned of the technique of plastination to preserve bodies for scientific study, eduction, and understanding years ago on the Discovery Channel. I have longed to see this exhibit since! I could not believe it was actually being shown in Portland at the same time I am here! If I had gotten my surgery on the original later date the exhibit would have already been packed up. LOL So visiting the OMSI to take in the opportunity was a no brainer.
While exploring the local area on foot (a block), we found the wonderful Marina Fish House Floating Restauraeant where we had a MARVELOUS lunch! I had the Washington Steelhead salmon which was simply perfect and melted in my mouth! Afterward, we took in the view of Portland from the restaurant dock and discovered that OMSI (the museum) was directly across the water from us! Thus we headed to OMSI to see the famous Body Worlds exhibit!
Absolutely fascinating!!!!!!! I am so glad I had the opportunity to see this wonder! Being a science buff and needing to read EVERYTHING, I of course took my time absorbing it all in! LOL Harley finished before I did. (I am like that in aquariums too!) ;+)
Some people may not think this would be so pleasant to see or think about before a surgery but I found it totally fulfilling and actually put me more at ease. It was interesting to see the inside of skulls and beautifully and artistically displayed brains while thinking about where the incision will be made and what part of the bone they will need to remove to access the tumor. They had slices (cross sections of brains) too where one could see a tumor, a hemorage from a stroke, and hydrocephalus. For me, such an experience enhances my understanding and definitely increases my appreciation for those who dedicate themselves to the medical profession.
I could go on and on but I will let you check out the link for yourself.
www.bodyworlds.com
After we finished (Or I finished) the exhibit, we headed out of Portland to Pacific City, Oregon where we will spend a few days gaining serenity, rest, and relaxation on the beach of the Pacific coast.
Trigeminal Neuralgia update:
Yes unfortunately it has returned but knock on wood it has not been as severe as last week yet. I felt it coming on at the bodyworlds exhibit. It is scary as I want the rest of the week to go well and I CANNOT and WILL NOT take the Tegretol again. I just can't go through the rest of this week the way I did last weekend. The episode at the museum was mild like a soft knock at the door but frightening if it is in the middle of the night and you don't know who is on the other side.
Later at midnight or 1 pm a full attack but still not as bad as the first. We have begun debating whether or not to increase my steroid dose. I prefer to not if I can hang in there and help it. Steroids can have bad effects as well and at the present dose I am doing well. I will have to take steroids for a couple weeks after the surgery so I do not want to take more if I can help it. I had a bad time with them in 2004 and 2005 which I do not want to revisit. I just hope the surgery allieves this problem (trigeminal neuralgia).
When we awoke we explored a little around the riverplace area in Portland near Dave and Christie's condo. In the morning paper we noticed that "Body Worlds" was actually on exhibit at the Oregon Museum of Science and Industry and is actually being presented by OHSU. How incredibly cool! I learned of the technique of plastination to preserve bodies for scientific study, eduction, and understanding years ago on the Discovery Channel. I have longed to see this exhibit since! I could not believe it was actually being shown in Portland at the same time I am here! If I had gotten my surgery on the original later date the exhibit would have already been packed up. LOL So visiting the OMSI to take in the opportunity was a no brainer.
While exploring the local area on foot (a block), we found the wonderful Marina Fish House Floating Restauraeant where we had a MARVELOUS lunch! I had the Washington Steelhead salmon which was simply perfect and melted in my mouth! Afterward, we took in the view of Portland from the restaurant dock and discovered that OMSI (the museum) was directly across the water from us! Thus we headed to OMSI to see the famous Body Worlds exhibit!
Absolutely fascinating!!!!!!! I am so glad I had the opportunity to see this wonder! Being a science buff and needing to read EVERYTHING, I of course took my time absorbing it all in! LOL Harley finished before I did. (I am like that in aquariums too!) ;+)
Some people may not think this would be so pleasant to see or think about before a surgery but I found it totally fulfilling and actually put me more at ease. It was interesting to see the inside of skulls and beautifully and artistically displayed brains while thinking about where the incision will be made and what part of the bone they will need to remove to access the tumor. They had slices (cross sections of brains) too where one could see a tumor, a hemorage from a stroke, and hydrocephalus. For me, such an experience enhances my understanding and definitely increases my appreciation for those who dedicate themselves to the medical profession.
I could go on and on but I will let you check out the link for yourself.
www.bodyworlds.com
After we finished (Or I finished) the exhibit, we headed out of Portland to Pacific City, Oregon where we will spend a few days gaining serenity, rest, and relaxation on the beach of the Pacific coast.
Trigeminal Neuralgia update:
Yes unfortunately it has returned but knock on wood it has not been as severe as last week yet. I felt it coming on at the bodyworlds exhibit. It is scary as I want the rest of the week to go well and I CANNOT and WILL NOT take the Tegretol again. I just can't go through the rest of this week the way I did last weekend. The episode at the museum was mild like a soft knock at the door but frightening if it is in the middle of the night and you don't know who is on the other side.
Later at midnight or 1 pm a full attack but still not as bad as the first. We have begun debating whether or not to increase my steroid dose. I prefer to not if I can hang in there and help it. Steroids can have bad effects as well and at the present dose I am doing well. I will have to take steroids for a couple weeks after the surgery so I do not want to take more if I can help it. I had a bad time with them in 2004 and 2005 which I do not want to revisit. I just hope the surgery allieves this problem (trigeminal neuralgia).
Pre-op appointment Tuesday 9-18-07 at OHSU
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!
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!
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)
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