Welcome to my journey with Neurofibromatosis type 2, known as NF2, a genetic mutation which causes numerous tumors to grow within my brain and spine. Since 2004, I have undergone radiosurgery and 3 brain surgeries for 7 brain tumors. Life with NF2 is definitely a test of faith and a challenge to keep positive. Join me on my harrowing adventure to keep active and live life to the fullest!
Tuesday, October 31, 2006
HAPPY HALLOWEEN!!! BOOHAHAHA!
Last night we had our pumpkin carving festivities. Pumpkin food, drink, and warm tea was also to be had. From left are featured my pumpkin, Pat's pumpkin, and Harley's pumpkin.
After searching two major stores in Redmond with no success I luckily found a pumpkin stencil pattern at our local grocery store. These stencils work even better because instead of paper that you need to tape on it is a sticker pattern. You just carve right over the sticker and when finished remove the excess sticker portions. No need for messy tracing with a pen or pencil, cutting out shapes to trace, or paper falling off the pumpkin face leaving an uneven pattern!
This works really great for someone like myself as my hands are no longer steady (nor is my patience) after the digression of NF2 tumors or treatment (not sure which or both....prior to all this I had pretty steady hands). In fact, for those who do not know, Zoology is my background degree. The disection portion of labs was always my forte' and at one point in my undergraduate education I thought I would probably make a great animal surgeon. However, it did not seem like like there would be a plethora of jobs in that route. I would not want to make an incision in a living creature either.
I guess I made a good consensus back then as there is no way I could perform something like that now! Harley on the other hand is a very skilled and masterful pumpkin carver. I kept thinking what a great surgeon he would have made. Yet I am very glad he did not choose that path either.
Click the lighthouse in the post title of this blog entry. It is a link to a slideshow of Pat and Harley carving their pumpkins. Included is a picture of all three of our pumpkins with the actual stencil pattern given names for each. UPDATE: YAHOO PHOTOS IS BEING CRANKY. THE EARLIER SLIDESHOW FORMATS I USED NO LONGER WORK BECAUSE THEY DECIDED TO UNBRILLIANTLY CHANGE TO A DIFFERENT MORE ANNOYING FORMAT. FROM THE NEW LINK I POSTED YOU WILL HAVE TO CLICK ON THE SLIDESHOW TO VIEW THE PICTURES IN SLIDESHOW FORMAT. THE ALBUM IS TITLED PUMPKIN CARVING 2006.
We realized when Harley was finished that he created another NF2 pumpkin. Last year was his first and we did not have stencil patterns. The reason it is an NF2 pumpkin is because it shows signs of the NF2 halmark of facial paralysis. I did not like the cleaver in it but he said that represents surgery on the side that is weakened.
To see our pumpkins from last year, please click the links to below that will direct you to last year's Halloween blog entries:
Mr. Eggplant Pumpkin
http://diverbeck.blogspot.com/2005/11/meet-mr-eggplant.html
My Happy Pumpkin from last year
http://diverbeck.blogspot.com/2005/11/happy-belated-day-of-dead.html
Okay I must be going nuts. I thought I posted the photos of our two pumpkins together last year but I guess I did not. Let me see if I can find it. Okay, Harley's pumpkin from last year is the small photo in the upper right corner.
Friday, October 27, 2006
Where you can find me
Hi!
I have created a new blog today. No I am not abandoning this one. I felt I needed a special place to share with you my involvement and preparation for one of the largest events of my life. I never imagined I would be in a marathon. Funny how it took being humbled and beaten down by NF2 to have my eyes opened wider. Just when I thought I understood empathy and many other perspectives of life, I have restarted life again anew.
If I had not been struck by NF2 I do not think I would be doing this. Strange how life takes us on those paths. I have thought about what I would be doing if I did not have NF2 and I am certain I would be too busy on a very different path and the thought of doing this marathon would have never entered my mind.
In the past months of making the decision, committing, fundraising for the LLS and my marathon involvement, learning more about "Team in Training", meeting the people training with me and dedicated to the society, finding out who supports me, I have gained more perspective than I could have imagined.
What started out as being able to walk at my regular pace again without a walking stick (after bouts of illness, dizziness, and at times not even being able to read or make it far out of bed), a chance to honor my grandfather battling his second cancer (a blood cancer), and an opportunity to fulfill a debt and responsibility I felt I needed to contribute for my good fortune, has turned into quite a phenomenal journey that I will carry in my heart forever.
They say that you can never fully understand a man (or woman) until you walk a mile in his (her) shoes. Well I am literally going to walk 26.2 miles and through the process I have been learning about the blood, sweat, and tears that people dedicated themselves to in order to give me a second chance.
Prior to my decision to embark on this journey I found I took something for granted that I never realized I had. I did not know what Team in Training was or the committment that people chose to make. I guess at the age of 21 and beyond I just thought the medical resources that kept me alive came from the government or perhaps I did not think about it too much. I was just glad to make it through that ordeal.
Being involved in this program has greatly enhanced my sense 0f gratitude and appreciation of life and the good will of humanity.
Please come and visit me at my Seattle Marathon Blog at http://blog.360.yahoo.com/blog-zo.V4TMzd7O1jdfKa9vCJKnI2TVF.
Please also check out the links down on the bottom of the left hand side of my yahoo 360 Seattle Marathon Blog. I have included links to the Leukemia and Lymphoma Society, the Team in Training program, my LLS donation page, the Seattle marathon info page, a link to the Seattle course map, and the pages of some of my amazing teammates who are inpiring and have overcome tremendous odds.
I have created a new blog today. No I am not abandoning this one. I felt I needed a special place to share with you my involvement and preparation for one of the largest events of my life. I never imagined I would be in a marathon. Funny how it took being humbled and beaten down by NF2 to have my eyes opened wider. Just when I thought I understood empathy and many other perspectives of life, I have restarted life again anew.
If I had not been struck by NF2 I do not think I would be doing this. Strange how life takes us on those paths. I have thought about what I would be doing if I did not have NF2 and I am certain I would be too busy on a very different path and the thought of doing this marathon would have never entered my mind.
In the past months of making the decision, committing, fundraising for the LLS and my marathon involvement, learning more about "Team in Training", meeting the people training with me and dedicated to the society, finding out who supports me, I have gained more perspective than I could have imagined.
What started out as being able to walk at my regular pace again without a walking stick (after bouts of illness, dizziness, and at times not even being able to read or make it far out of bed), a chance to honor my grandfather battling his second cancer (a blood cancer), and an opportunity to fulfill a debt and responsibility I felt I needed to contribute for my good fortune, has turned into quite a phenomenal journey that I will carry in my heart forever.
They say that you can never fully understand a man (or woman) until you walk a mile in his (her) shoes. Well I am literally going to walk 26.2 miles and through the process I have been learning about the blood, sweat, and tears that people dedicated themselves to in order to give me a second chance.
Prior to my decision to embark on this journey I found I took something for granted that I never realized I had. I did not know what Team in Training was or the committment that people chose to make. I guess at the age of 21 and beyond I just thought the medical resources that kept me alive came from the government or perhaps I did not think about it too much. I was just glad to make it through that ordeal.
Being involved in this program has greatly enhanced my sense 0f gratitude and appreciation of life and the good will of humanity.
Please come and visit me at my Seattle Marathon Blog at http://blog.360.yahoo.com/blog-zo.V4TMzd7O1jdfKa9vCJKnI2TVF.
Please also check out the links down on the bottom of the left hand side of my yahoo 360 Seattle Marathon Blog. I have included links to the Leukemia and Lymphoma Society, the Team in Training program, my LLS donation page, the Seattle marathon info page, a link to the Seattle course map, and the pages of some of my amazing teammates who are inpiring and have overcome tremendous odds.
Wednesday, October 25, 2006
Quotes I like that get me through
Here are a few quotes that I have enjoyed. I have a calendar with a quote for each day. Generally I also read daily affirmations too. These words are what motivates me and helps me press on. I will leave you with a few of my recent favorites while I do some "catching up" from my return. I hope you enjoy them as much as I do.
More things are wrought by prayer than this world dreams of.
- Alfred Lord Tennyson
Our chief want is someone who will inspire us to be what we know we could be.
- Ralph Waldo Emerson
What people say you cannot do, you try and find that you can.
- Henry David Thoreau
You cannot dream yourself into a character, you must hammer and forge yourself one.
- James A Froude
When a man's fight begins with himself, he is worth something.
- Robert Browning
While you live, while you may, become good.
-Marcus Aurelius
Have a purpose in life....throw into your work such strength of mind and muscle as God has given you.
- Thomas Carlyle
The possibility that we may fail in the struggle ought not to deter us from the support of a cause we believe to be just.
- Abraham Lincoln
It is the greatest of all mistakes to do nothing because you can do only a little. Do what you can.
- Sydney Smith
More things are wrought by prayer than this world dreams of.
- Alfred Lord Tennyson
Our chief want is someone who will inspire us to be what we know we could be.
- Ralph Waldo Emerson
What people say you cannot do, you try and find that you can.
- Henry David Thoreau
You cannot dream yourself into a character, you must hammer and forge yourself one.
- James A Froude
When a man's fight begins with himself, he is worth something.
- Robert Browning
While you live, while you may, become good.
-Marcus Aurelius
Have a purpose in life....throw into your work such strength of mind and muscle as God has given you.
- Thomas Carlyle
The possibility that we may fail in the struggle ought not to deter us from the support of a cause we believe to be just.
- Abraham Lincoln
It is the greatest of all mistakes to do nothing because you can do only a little. Do what you can.
- Sydney Smith
Wow! Where did October go?
Geesh! I just realized it has been a whole month since my last blog post. I got very busy after my birthday trip to Mt. Rainier. It is now 1 month prior to the marathon so I have been busy trainining and preparing f0r it. I am still doing fundraising and focusing on everything I will need to be ready for the big day.
I also had to plan for our trip to the southwest. We left on October 16th and returned very late last night (or early this morning depending on how you look at it). I hope to post a couple shots of the 1000 or so photos we have. But right now my first priority is preparing for the Seattle marathon. My fantasy is to make another blog with more details about my involvement in the marathon, info on why I am doing it, some pictures, thank you recognition to my donors, names of those I am honoring and walking in memory of, and hopefully some shots of my experience in the marathon (probably not great because I have to stand still to get a steady shot but it will at least give you the perspective of what it is like to be in one). I was hoping to accomplish building this site before the marathon but I am not sure I will have time. I might have to just write a little something about it here. In case you are wondering...YES! THIS WILL BE ONE OF THE BIGGEST EVENTS OF MY LIFE!. I am nervous and preparing for it just like someone who is getting married or having a child. One main thought that goes through my mind in all this is "Okay now I am down to one month. I made it through 5 months. Please God do not let me get injured before the event.".
Oh yeah. Here is the Team in Training website: http://www.active.com/donate/tntwaak/tntwaakRDufek
About the last appointments.............well shoot I just don't know what to say. I was told things look stable on the MRI but somehow the MRI report indicates that there is even less space for my brainstem between the tumors on both sides. Somewhere in the process of time the current report indicates there is now only 4mm of space between the two tumors (brainstem in the middle) as opposed to the 6 or 8 mm prior. I have inquired about this discrepancy which seems rather important and huge to me. Afterall, it is MY BRAIN. I have not gotten an answer. Could it be that the reading radiologist made an error????? Well I pursued it for awhile and it just exhausted me. There is nothing to be done anyhow if there was some growth nobody caught except to just cut it out. I am focused on the marathon right now and don't want anything to change my plans. I will do some more prodding and investigation into after the big event.
In case you have not figured it out like I have over the past few months, one event carries me over to the next. It gives me something to look forward to and focus on. About a year or so ago I was afraid or leary to make plans (such as traveling) so far in advance because I was not sure what was going to happen or if I would make it there.
My birthdays are kind of like that now. There was a time after treatment when I was afraid I would not make it to my 32nd birthday. It is kind of like the movie "Final Destination". It felt really great when I made it to that day and it had passed! So each year is kind of a milestone for me now. I reflect back on all that I have been through and how far I had come when I was uncertain to be at that point.
I also had to plan for our trip to the southwest. We left on October 16th and returned very late last night (or early this morning depending on how you look at it). I hope to post a couple shots of the 1000 or so photos we have. But right now my first priority is preparing for the Seattle marathon. My fantasy is to make another blog with more details about my involvement in the marathon, info on why I am doing it, some pictures, thank you recognition to my donors, names of those I am honoring and walking in memory of, and hopefully some shots of my experience in the marathon (probably not great because I have to stand still to get a steady shot but it will at least give you the perspective of what it is like to be in one). I was hoping to accomplish building this site before the marathon but I am not sure I will have time. I might have to just write a little something about it here. In case you are wondering...YES! THIS WILL BE ONE OF THE BIGGEST EVENTS OF MY LIFE!. I am nervous and preparing for it just like someone who is getting married or having a child. One main thought that goes through my mind in all this is "Okay now I am down to one month. I made it through 5 months. Please God do not let me get injured before the event.".
Oh yeah. Here is the Team in Training website: http://www.active.com/donate/tntwaak/tntwaakRDufek
About the last appointments.............well shoot I just don't know what to say. I was told things look stable on the MRI but somehow the MRI report indicates that there is even less space for my brainstem between the tumors on both sides. Somewhere in the process of time the current report indicates there is now only 4mm of space between the two tumors (brainstem in the middle) as opposed to the 6 or 8 mm prior. I have inquired about this discrepancy which seems rather important and huge to me. Afterall, it is MY BRAIN. I have not gotten an answer. Could it be that the reading radiologist made an error????? Well I pursued it for awhile and it just exhausted me. There is nothing to be done anyhow if there was some growth nobody caught except to just cut it out. I am focused on the marathon right now and don't want anything to change my plans. I will do some more prodding and investigation into after the big event.
In case you have not figured it out like I have over the past few months, one event carries me over to the next. It gives me something to look forward to and focus on. About a year or so ago I was afraid or leary to make plans (such as traveling) so far in advance because I was not sure what was going to happen or if I would make it there.
My birthdays are kind of like that now. There was a time after treatment when I was afraid I would not make it to my 32nd birthday. It is kind of like the movie "Final Destination". It felt really great when I made it to that day and it had passed! So each year is kind of a milestone for me now. I reflect back on all that I have been through and how far I had come when I was uncertain to be at that point.
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