Nuff Said! -pun intended ;o)

Positives

Everyday the challenge is to find the the good no matter what life throws at you.

Good moments today and the past few days:

When I was struggling with dispair and hope while fear began sinking in, I read that Sean Swarner is back on the mountain (Denali) and will "Keep Climbing" to achieve his goals and be an inspiration for the cancer community.

To read his journal and follow his journey go here: http://www.cancerclimber.org/climb.html

I discovered that my long time friend has found someone truly special and is engaged! Congratulations Joanne and Travis!
To see photos of their spectacular sailing journey and where Travis proposed, go here:
http://picasaweb.google.com/joannedelorme/Providencia

I am blessed with a wonderful and supportive husband who is always there for me. We have had many good times together and our life is always full and an interesting journey.

My dogs (even though almost 6 years old) are still as cute as puppies and bring a smile and much joy to my life everyday.

Last night I was able to stand on the BOSU ball trainier for over 5 minutes setting a new personal record!!!!!

The other day on a walk with the dogs, we saw a fantastic site! We witnessed a large bird which I assume was a majestic Great Herring at the pond for the first time this year. On the same walk there was a fresh rain that cleared with the sun breaking through the clouds. The aroma of the fresh earth and grass reawakened my spirit as I inhaled the breath of living.

A few days prior when we were out for our walk on the same trail, a lovely couple bird watching and taking pictures stopped me to show their wonderful discovery. Even though I am deaf, they were still interested in communicating (the man knew how to fingerspell) and pointed out the very RARE site of an American Bittern which I have never seen in the wild before. If they had not been so kind and eager to share their discovery, I would have missed the opportunity.

Saturday was nice and I had the chance to visit one of my places of refuge here at the Bellevue Botanical Gardens. The blooms and perfection of landscape are just lovely! It is an art I truly appreciate mostly especially because I do not have a green thumb! It is nice to have such peaceful places nearby to visit. As an added bonus, Harley surprised me and showed up. We had text messaged each other as we had different agendas that day and I thought he was in a complete different location. LOL While taking a photo of some gorgeous rhododendron trees, he came up to me from behind! hehe ;o)

Here is a quote that has instilled inspiration and hope for me today. I have read it before but it left my mind and today was a perfect time to revisit it!

You gain strength, courage and confidence by every experience in which you really stop to look fear in the face…You must do the thing you think you cannot do.
- Eleanor Roosevelt

Incredibly Humbled I

Wow! You know how I just posted this morning about my feats of accomplishment standing on the BOSU ball? Well when I did a search for it I also came upon this site where they use the BOSU ball for sports condition training.

LOL I must look like a dang fool compared to what they are doing in the short video on this site! I am quite literally blown away!

Check out the link I have included by clicking on the lighthouse in the post title. OR if that does not work for you, past the following into your browser to view the website for TWIST CONDITIONING INC. - the sport conditioning specialists:
http://www.sportconditioning.ca/

The small video automatically appears when you open the page and is not at all boring. It is very fast paced and almost makes my head spin.

About Sports Conditioning from the BOSU site:

Sports conditioning, by its nature, is dynamic. The qualities of sports movement that can be trained with BOSU® Balance Trainer include endurance and power, cardiovascular conditioning, agility, balance, proprioception and flexibility. You can accomplish specific transfers to almost any sport through a variety of static balance exercises and dynamic balance drills. The variations are almost unlimited. One, two or multiple BOSU® Balance Trainers can be used to set up drill patterns for sports goals.

Here is another site I found with the BOSU balance trainer
http://www.wtnh.com/global/story.asp?s=1367599&ClientType=Printable

(WTNH, July 20, 2003) _ It's hard to believe that bouncing on a squishy half moon shaped ball can actually get you in shape. But, it can! The new form of exercise is called BOSU. From rehabbing a reconstructed knee to setting world records, BOSU allows you to find your "point of challenge" and develop beyond that point.
A local aerobics instructor will be here to show us how to do it.
Watch the interview
For more information on BOSU Balance Training: http://www.bothsidesup.com/.For more information on Club Fitness: www.guilfordfitness.com/index.cfm

Red Hot Poker!

If you are in your 30s like me, you may remember from MTV in the early 90s, the hyper blond actor that would seem to have a stress attack on camera. He would get uptight and his slogan was the feeling of "a red hot poker".

Well this morning I feel like I have a searing red hot poker in my good eye!

Here is how it goes: with NF2 I cannot produce tears or enough to actually cry. In addition, the eye lid of my right eye (the side which I have experienced facial paralysis on) does not actually close fully when unconscious (sleeping). Therefore at night I have to use Refresh Gel Drops in my eyes and wear an eye mask (obtained from an airplane trip in 2004) to keep my eye closed. Most people with NF2 tape their eye shut but I have not resorted to that as I get up many times a night to use the restroom. If my eye was taped shut I would have to remove it and reapply it each time while not fully awake.

The result is that I wake up in the morning with irritated eyes most often one of which is completely pasted shut (the left good eye) and the other not fully pasted shut but crusty. I need to use the restroom immediately upon waking. Hence my eye mask sits on my head and I use the one eye (the poor one) to stumble my way to the bathroom.

Normally I could take time to readjust by putting Refresh Tears on my eyes (which are thinner to loosen the dried gel). This would take a transition period though and I don't have that kind of time when I wake. My urge is immediate. If I can consciously become aware fast enough, I splash some tears on my eyes and hurriedly make my way to the restroom trying not to take off a shoulder, trip, or break my arm when I sit on the toilet seat (I often have to reach out and grab the floor to keep from falling).

After my relief is the time when I make the routine of splashing warm water (or using cold while waiting for the water to heat up) on my eyes to unpaste them. Sometimes when the water warms I use a hot washcloth compress on my eyes and lie back down to let the warm dampness unglue them. However, I have been known to fall back asleep when I do this.

In all it probably takes me a half hour to an hour to adjust to the vertical world from hours in the horizontal. Yes this is a rather significant transition and important daily ritual for many people with NF2 before they can function for the day.

Back to the searing hot poker.........Somehow something went wrong and happened to my good eye that gets pasted shut. I awoke with burning pain in that eye. I recall getting up during the course of my sleep to use the restroom. When I awoke very early this morning I noticed that my lower lid was dried hanging open a little (kind of if you slightly pulled your eye lid down to look for a hair in your eye). At that time I noticed I was half awake and disoriented. I think I splashed water on my eyes to get the gel off. Then I returned to bed and I THINK I reapplied the gel drops to both eyes and put on my eye mask. I really can't remember nor can I remember from when I woke up as the pain distracted me.

My right eye seems fine. Yet my left eye burns really bad and I have applied water rinses and several tear drops to try to wash it out. I thought maybe a hair got stuck under my eye lid.

Upon inspecting my eye with a flashlight (I cannot do this with the right eye), I noticed that it was all blood shot. The little red aggravated capillaries covered the white space of my eye ball. I could find no hair or debris. The only thing I can figure is that maybe one of the hard crusties fell it my eye and scratched it! I have scratched the cornea of my other eye before and the pain does feel similar.

WONDERFUL! THESE ANNOYANCES OF NF2 DO NOT MAKE FOR A PLEASANT START TO THE DAY!

I have gained minor relief by reapplying gel drops to that eye and lying down for a few minutes. It has improved and I can see out of it but it is sore and giving me dull head pain on that side of my head.

If I use the ointment not only will it blur my vision, but the ointment has caused a slight burning irritation in my eye in the past.

So for now and for this morning or maybe even today, I guess I will have to contend with a "red hot poker".

Click on the lighthouse in the above post title to see the Refresh brand website and find out what "dry eye" is.

My Balancing Act

It's a flying saucer! Look out! LOL No the above photo is actually my latest toy device at Gold's gym. It is called a BOSU (both sides up) balance trainer. It is like a swiss balance ball cut in half and mounted on a hard plastic base.

Apparently there are several exercises you can do with it (what I would consider extremely difficult and advanced....not sure if I could ever attain some and others I know I cannot). However I just try to simply stand on the thing.

I remember the first time Harley was showing off and jumping up and down on it while I had extreme difficulty just maintaining 5 seconds of stationary standing without falling off. Yeah I have walked a marathon and climbed the tallest tower on the west coast but I just make you think things are easy when actually they are not. My legs are continually bruised from falls in just normal daily life and I have fallen down the stairs bruising my tailbone and most recently spraining my other ankle (I sprained the opposite one when I came home from treatment in summer 2004).

Anyhow, I am really proud to say I have gone from finding it extremely challenging to stay on the device for 10 seconds to my recent accomplishment a couple days ago of staying on for over 5 minutes.

I had a major breakthrough the day I climbed the Columbia Tower and met the Ershlers. After the climb I decided to stop off at the gym and workout seeing as it only took me 15-16 minutes to climb the tower. I had no idea really how long it would take to climb the tower as the Seattle marathon lasted hours to complete.

For a few weeks of practicing over and over again, I just could not seem to exceed 10 seconds and actually averaged 5 seconds as many tries resulted in 3 seconds before falling off. I was so elated after the tower climb that I was in a very determined mood. I am not even sure how many practice attempts it took me. I figured out that focusing on the striped colored wall in front of me helped immensly compared to a plain white wall with people walking past in my side view.

The stripes were large so I focused on the border between them that was near eye level. Then I noticed a few light scuffs on the wall in front of me and focused really hard on them until my eyes were not bouncing so much. My legs shaked as if they were about to crumble. I pictured the image of Susan Ershler's face and envisioned her telling me I could accomplish this feat. Finally after 150 seconds (yes that zero really is meant to be there) I released from the device happy and feeling "On Top of the World". What a great day! Not only did I climb the tower but I also drastically broke my measily 10 second record with an astonishing 150 seconds!!!!!

Now some people may observe me with strange curiousity or you yourself may wonder what the fuss is all about. For some, they would question why I was having such a struggle. I have to admit that I would have been one of them before losing my balance. Now I understand.

Often when I go to the gym, this is one of the balance activities I have been working on improving. About 6 weeks ago I broke my record again and almost made it to 5 minutes (I think it was 4 and a half). Yet when I came home it after dark, I got disoriented in the driveway and fell twisting my ankle badly and landing on it. Frustrated that my foolish foible would interupt the strides I made and hard work I had accomplished, I knew I would have to start again.

Fortunately I did not have to go back to the drawing board. I abstained from practicing on the BOSU trainer until my ankle felt a little stronger. After two or three weeks I could not contain myself any longer, jumped on one day and accomplished 2 minutes after some practice. Sunday night I accomplished over 5 minutes but I noticed the device I was standing on was re-inflated to its maximum capacity. I am not sure if this makes it easier or if my balance is actually improving. I will have to test out the difference tomorrow night.

About the ankle......Here is how it happened and something those of us with NF2 or balance challenges deal with DAILY!!! I should have known better really. As I said, I came home at night (dark out) when it is important to be more cautious as those of us balance challenged have a hard time with less light. (The best I can describe this is the difference between day driving and night driving...your perception and reflexes to situations drastically change. Now imagine having night blindness on top of that.)

I got out of my car at home not thinking in the right frame of mind about needing to be more cautious. My hair should have been tied back and it was not. I leaned down to pet the dogs and my hair fell in my face resulting in wild disorientation. I had no sense of direction (succumbing to a sort of land type vertigo). As I began dancing around to avoid falling and to get my bearings I twisted my ankle. Then the final icing on the cake was my heavy gym bag sliding off my right shoulder and causing me to come crashing directly on top of the twisted ankle.

It was excrutiating pain! The dogs were dumping on me and licking me all over my face as they worried about me hurting myself (they tend to do this when I hurt myself or I happen to be sad). LOL I am just editing this now and realized what I wrote here!!!!! ROFL I meant to say that my dogs were "JUMPING" on me and not "DUMPING" on me! Eeww! Gross! I am sure glad I have to ability to laugh at my foibles! ;+)

For the first few days I did not go anywhere as I had injured my right ankle. It hurt too much to drive and was painful going down the stairs. Five or six weeks have passed but it is still swollen (larger than the other one) and hurts in certain positions or just plain bothers me to the point where I feel like pulling it off my leg.

Yes I had it looked at 3 weeks afterward, but the doctor did not want to do xrays and said this was typical for a sprain. As a result, I have had to cease my running that I was making improvements in (was hoping to run some 5 Ks this summer and work up to a 10K). I also stopped going to the water aerobics which I have really enjoyed and is good for my balance as there are certain moves or running in the pool which would cause the wrong kind of strain on the ankle. If it is doing better I can commence running in July. Perhaps I will try returning to water aerobics next week.

What else have I been doing to keep active and work on balance? Well fortunately I can still walk without my ankle bothering me. Last week I tried running for short spurts and took the next day off completely. I have also been back to lifting weights this year as I am trying to gain back muscle strength that will help me improve my balance. In addition, there is this machine I really like developed by Cybex which takes impact and jarring off the ankles. It is like a combination of running, cross country skiing, and stair climbing. It is great!!!!

By the way, check out the link to find out more about what a BOSU is by clicking the lighthouse link in the post title. It is cool!

The Daily Press article and I with the Ershlers

Here is the news release article that ran in my hometown newspaper in Escanaba, MI. I am pictured with Susan and Phil Ershler who are featured in the article as the honorary co-chair people of the event.

Phil and Susan are mountain climbers and the first couple to summit the highest peaks on all seven continents together. Phil is also the first American to have climbed Mt. Everest and an amazing 3 time cancer survivor. You can read about their life journey in their new book titled "Together On Top Of The World" which was released in stores April 2nd.

Special note: THANK YOU ALL who have donated to my fundraising efforts, have encouraged me, sent me well wishes and congratulations, and who have believed in me by showing your acknowledgement and support. I could not have accomplished these feats or gotten as far as I have without your love, hope, faith, and prayers! Thank you! You are my motivation and driving force! :o)

Sincerely from the deep recesses of my heart and soul, Rebecca

2007 Big Climb for Leukemia

Former Escanaba resident Rebecca Dufek to scale tallest building west of Mississippi at Seattle’s Big Climb for Leukemia

Climbers ages 8 to 82 to climb tallest building west of Mississippi for Leukemia & Lymphoma Society

ESCANABA, March 13, 2007 – Rebecca (De Grand) Dufek will join famed climbers Phil and Susan Ershler, the first couple in history to successfully climb the famed Seven Summits – summiting the highest mountain on all seven continents – as they battle life-threatening blood cancers Sunday, March 18 at Seattle’s 21st annual Big Climb for Leukemia.

A 14 year survivor of Hodgkin’s Lymphoma, Rebecca, 35, will climb in honor of her grandfather Clarence De Grand who lost his battle Myeloma cancer last August. This will be Rebecca’s first year in the Big Climb event. In 2006, Rebecca was a member of the Leukemia and Lymphoma Society’s Team in Training program which trains participants to complete a marathon while raising funds for blood cancer research. In November Rebecca finished the 26.2 mile Seattle marathon course in memory of her grandfather.

The annual climb to the top of the tallest building (by stories) west of the Mississippi raised $465,000 in 2006 to fight blood cancers. Along with the Scott Firefighter Stairclimb, March 4, the Big Climb for Leukemia is one of two Seattle climbs benefiting the Leukemia & Lymphoma Society this March.

“When I first learned about the Big Climb I thought it was a great idea! Not only is it a personal pursuit but a meaningful purpose towards a worthwhile endeavor I believe in,” said Rebecca. “Each step I will be reminded of what I and other blood cancer patients have or are going through. It is that reminder which will help drive me to the top.”

Beginning at 8:30 a.m., climbers will sprint-climb 788 feet in vertical elevation (1,311 stairs / 69 stories) from the Fifth Ave. lobby level to the 73rd floor observation deck of the Columbia Center. At 943 feet tall, the Columbia Center is about one and a half times the height of the Space Needle.

Like many competitive fun runs, both competitive and “fun” categories are available to accommodate all ages and abilities with individual climbers and teams vying for best time in six age categories and most funds raised. To make a donation to fight blood cancers in support of Rebecca’s climb, please visit her fundraising page at www.active.com/donate/2007bigclimb/bc07RDufek .


“Sometimes things are destined to be,” said Phil Ershler who along with his wife Susan will co-chair the Big Climb. “I’ve been treated for two different cancers – one just prior to heading for Everest in 2002, which delayed the quest, and the other just after the climb,” said Ershler, who has also seen his Ecuadorian goddaughter and a Whitman College classmate both survive their Leukemia diagnosis as well as losing his friend and Mt. McKinley climbing partner, the famous Iditerod winner, Susan Butcher, to the disease this last year.

“Surviving cancer means a second chance at life,” said Ershler. “This is possible, in part, because of research funded by events like the Big Climb for Leukemia. “Sue and I are honored to play even a small roll in the ongoing efforts of the Leukemia & Lymphoma Society.”

More than 747,000 Americans have leukemia, myeloma or lymphoma, the most common form of blood cancer. Among children under 20, leukemia causes more deaths than any other cancer. In 2006, an estimated 2,640 Washingtonians were diagnosed with blood cancer and an estimated 1,150 lost their battle with the disease.

For more information on the 21st annual Big Climb for Leukemia, please visit http://www.bigclimb.org/

About TOGETHER ON TOP OF THE WORLD
When Phil and Susan Ershler reached the top of Mt. Everest, they became the first couple in history to scale the fabled Seven Summits. TOGETHER ON TOP OF THE WORLD is the story of their journey—through life-threatening illnesses—to the highest mountain on every continent, to the extremes of elation and despair. It is a love story, an adventure story, a story of success against all odds. Above all, it is the story of two people who refused to back down in quest of a seemingly impossible dream. TOGETHER ON TOP OF THE WORLD by Phil & Susan Ershler with Robin Simons will be available at the Big Climb for Leukemia and in book stores April 2. A portion of the proceeds from copies of TOGETHER ON TOP OF THE WORLD sold at the Big Climb for Leukemia will benefit the Leukemia & Lymphoma Society.

About the Leukemia & Lymphoma Society
The Leukemia & Lymphoma Society®, (http://www.lls.org/) headquartered in White Plains, NY, is the world’s largest voluntary health organization dedicated to funding blood cancer research and providing education and patient services. Since its founding in 1949, the Society has invested more than $424 million in research specifically targeting leukemia, lymphoma and myeloma.

The Washington/Alaska Chapter (www.lls.org/wa) is one of 66 local chapters across the US, with additional branches in Canada. Located in Seattle since 1984, the Washington/Alaska Chapter is close to the treatment facilities where patients and families come for lifesaving therapies. Major, annual fundraising campaigns include Team In Training®, Light The Night® Walk, School & Youth Programs, the Scott Firefighter Stairclimb, the Big Climb for Leukemia and The Leukemia Cup Regatta.

www.lls.org/wa

I climbed to the top of Seattle on March 18th!

Photos were taken by Big Climb for Leukemia participant Laura Cunningham at the top of the Columbia Tower (former Bank of America Tower) in Seattle, Washington on March 28, 2007.

Since I first heard of people climbing the tallest skyscraper in Seattle as a fundraiser back in 2004 or 2005, I was interested in partaking in such a feat some day. In 2005 I was still sick and in 2006 I took a trip out to Michigan with my dad to visit my grandpa. Thus after completing the marathon in November and my balance improvements this seemed to be my year and my chance to take a shot at it while I am still able.

The event is known as "The Big Climb For Leukemia" which is a fundraiser for the Leukemia and Lymphoma society to reach for their mission of curing blood cancers and providing better treatments and education for patients and their families. In addition to having NF2 I also was hit with a blood cancer at the age of 21 years old known as Hodgkin's Lymphoma.

Pictured here I proudly wore my Team in Training jersey from the Seattle marathon in November 2006. Written on the back of the jersey says "I am going the distance for "Grandpa Curly". In August my grandpa passed away from another blood cancer known as Myeloma. Climbing the tower I was able to get closer to him and like the marathon put reason and purpose to what he and I have been through so that our experience may help others.

In case you do not know, pictured in the background of the above photos are the Seattle Harbor, Puget Sound, and the Olympics Mountains. The guidelines said I could not bring a camera but fortunately I found someone at the top who had one and was kind enough to snap a few photos and email them to me.

From the top I looked down and could see the entire route I traversed in the marathon. It was a thrilling experience to see it from that perspective, to have some quiet moments to reflect on how I came to get to the top of the tower finally and to pray and thank God for being so gracious to me and to thank those who I have lost but are still with me and close at heart.

Below is a letter I wrote after the climb and sent out to family and friends from where I am from.

Yesterday was a successful event! I had no idea really how long it was gong to take me and when I started I surprised myself. It took me about 15 to 16 minutes to climb 69 floors of the tallest skyscraper in the city and on the west coast!

I had never been to the Columbia Tower before (same nunber of steps as the Sears tower in Chicago). I envisioned a big wide scary stairway with lots of people pushing and shoving their way to the top. There were quite a few (maybe 50?) that had the same start time as me but they formed a line and released us in pairs or groups of 3 at time intervals spaced apart.

To my delight, the stairway was the most ideal stairway I could have imagined! It was narrow enough that I could easily put both hands on the hand rails on either side and I had enough room to pass people and hang on to the left side hand rail.

The experience was so thrilling! I never wanted to stop (except I had to a couple of times to take a drink of water).

I was additionally elated to discover that my mentor from the marathon was at the event and to also meet and shake hands with Phil and Susan Eshler who are the first couple in history to climb the 7 highest peaks in the world!

Ok. LOL Enough of my babble already! Thanks for all the good wishes. They really motivated me!

Attached are photos of me taken by another participant (Laura Cunningham) at the top of the Columbia Tower. Puget Sound and the Seattle harbor can be seen in the background. It was too cloudy of a day to see Mt. Rainier and the Cascade mountains but in the one photo you can see a peak of the Olympic Mountains beyond the waters of Puget Sound.

Enjoy and have a great week!

Love, Becky

Weird...new blog changes

Hey I am still here! I have been on a busy hiatus. In fact there happened to be lots of changes since I last wrote which required me to get a google account. So if I happen to go missing in action again, it may just be that I got confused on the new system and forgot how to sign in.

Alright. Let me back track and give you the great news from March in another post.

Be prepared to read a few posts to get caught up! ;o)

Evolution of a Face - 2 year journey through facial paralysis

Upper photo: onset of facial paralysis on December 14, 2004.

Photo on left: self portrait taken in the upcountry of Maui in January 2007.

Photo on right: Valentine's dinner cheers taken by my husband Harley on February 14, 2007.

The photo on the top is the night I was hit with the onset of facial paralysis exactly 6 months after cyberknife radiosurgery for the right side vestibular schwannoma (brain tumor: AKA an acoustic neuroma in an NF2 patient......NOT an AN patient....the difficulty in treating the tumors are different between the two kinds of patients).

The reason I experiened facial paralysis months after treatment is that the tumor swelled (for a period of 10-11 months) and hence pressed on the facial nerve as well as my vestibular and optic nerves.

In the photo my face is swelled up to its maximum (so much so that it hurt) from the steroids. In addition, if you look closely you will see that I have lots of acne in that photo. It is a common side effect of the steroid Decadron which I had been taking to reduce the swelling and combat some of the side effects of the swelling tumor (dizziness, vertigo, vomiting, etc.).

The other two photos are more recent pictures of me taken in 2007 where you can see some changes. Although it does not occur for everyone, the facial nerve in some cases (if not severed through surgery) does have the ability to regenerate very slowly. It appears that I may have been one of those lucky ones for the time being. However, I have not achieved 100% function of my face back. (Truth be told I kind of picked some good photos to show you).

In January/February of 2005 a facial nerve test performed on me revealed that I lost 50% of my facial function on the treated side. The paralysis not only discouraged/depressed me in the department of my vanity but it also caused eating, drinking, swallowing, dental and chewing problems from numbness on that side and decreased saliva production, loss of tear production, problems with simple facial movements (I still cannot blow up a balloon!), and problems with my eye on that side as the eye lid does not fully seal while sleeping. Shortly after the paralysis I had to become adjusted to this weakness and scratched my cornea as I did not have the strength to close my eye lid tightly to protect the eye. As soon as the scratch had healed I nearly scratched it again while rinsing my face after using facial soap that contained cleansing beads.

During this time was a very low point for me and the only reason I have the photo above is that I wanted to show the medical staff where I was treated in California what happened. I tried very hard for a solid year to avoid having my photograph taken and releasing them. I have more that I finally feel brave enough now to post. I need to find where they are all stored on the computer and file them into flicker.

The first time I saw the original facial paralysis photos from December 2004 is when I was in Arizona in October 2005. They were on my husband's laptop and we saw/found them while uploading some of our travel photos to see. It was a horid emotional shock for me as I did not recognize myself. To me I appeared a monster and it reminded me of the difficulties I had been through unexpectedly over the last year. I nearly broke down in hysterics but at the time I was able to get a grip.

Although my face has not been restored to what it was before treatment, for the most part I am comfortable with its present state and enjoy it while I can. I know that everything is fragile. You never know when your blessings and luck are going to turn. Since a month or two before the marathon, I have been experiencing small bouts of my face "locking up" on me. This happens if I am tired, have not had enough sleep, am stressed, and sometimes it seems for no reason. The face will twitch and freeze into a pose for seconds to a minute like a bad botox nightmare. I get anxious when this happens and start contorting my jaw around and massaging my face in deperation for it to unlock. It eventually returns and I think "Phew! Luck was on my side this time but what about next time?" LOL Ok I will be honest...sometimes I am pleading "God please don't let it happen again. Please let me keep my face. "

Anyhow, I wanted to post this topic and the photo on December 14th of 2006 but wouldn't you know we had a storm that day and lost power for 8 days. Recently the topic of facial paralysis has come up again within the NF2 community as almost ALL of us have it.

The question posed was whether facial nerve stimulation helps? Anyone try that? You do not have to have NF2 to share your wealth of knowledge. I am willing to learn whatever anyone knows about it. If you don't know but would like to research it for me, THAT WOULD BE MOST WELCOME AND WONDERFUL!! (hint, hint). :o)

Of particular interest to myself, I am very interested to know of what anti-wrinkle or wrinkle correcting products have worked for you if you have tried them. After my face shrank post steroid use and I lost some weight, my face has become wrinkly as it was very stretched out. I was hoping that it could bounce back but alas I am in my mid-30s now and time is persistant on continuing to weather my face.

Here I am.

It has been a long time I know. After the large windstorm that knocked out our power for 8 days, holiday travel, disabled internet access for 3 weeks due to the damaged cable lines, and a trip off the mainland, we are here and back online finally. Actually we got home last week and the remainder of the snow that blew in over Seattle is nearly gone out at our place.

No I have not had writer's block. In fact I had so much t0 talk about that I have been left feeling overwhelmingly behind to a p0int where I do not know where to start. To be honest my brain has been on maximum overdrive and I hit a spell where I just felt burned out and like vegatating my brain with a "24" episode escape (all episodes on the 3 netflix disks of the last season).

Now it may sound completely ridiculous to you and you may wonder how in the heck I could be burned out ESPECIALLY after I just came back from a vacation. Well I will tell you.....

This week I was wondering what in the heck is wrong with me and feeling that I have been caught up in a lazy state. Everyday I seriously pray to be a productive person and to get everything done.

Then tonight I stopped to think about it. My brain is continually firing and problem solving. For a short bit I was thinking it such a shame to have all these problem solving skills, education, and knowledge to not use it. Then I realized that I use and RELY on these skills and instinctual abilities everyday. It is how I survive.

A couple months back I was cooresponding with another friend with NF2 who recently ran a half marathon and has been a very athletic person throughout his life. He wrote to me "Everyday is a training day." Wow! He is absolutely right!

Just because a marathon or athletic event has ended (or a surgery or treatment is complete) does not mean training is ended. From the time I wake until the time I go to bed, it is practice, practice, practice. First it is practice getting out of the bed without falling over and bumping into things, then it is unpasting my eyes from the eye gel that keeps them closed at night and from drying out, then it is reorienting the eyesight (if one has hampered vision) so that I can balance and see, then it is getting used to walking in the vertical world after hours of resting in the horizontal world. Basically, it is a quick evolution of the body within a half hour or hour in order to adapt and function in the physical earthly world.

Those are just minor adaptations that those of us with NF2 get used to as the daily routine. Once hitting a state of consciousness I have found that I must try my best to always be mentally and evironmentally aware of my surroundings and what is happening. This is where the mental game of problem solving really kicks in.

Some things range from simple problem solving to very complex and life dependent.

Simple: I am going to an environment with most if not all hearing people. Thought: Is it a situation where I will need an accommodation? Will it be a place which offers an accommodation? Who do I contact and how far in advance? If it is a party or small get together and there is no accommodation, how will I communicate with people? How will I enjoy myself if nobody communicates with me? Do I have pen and paper ready? How do I get around people not believing I am deaf because I can speak? What if people do not write and keep speaking to me? How will I handle myself? What do I do? What if everyone is talking and I am bored?

Unforeseen situations (more complex): A cop confronts me in a parking lot, does not show identification, does not write to me until after several requests, does not believe I am a person with imbalance due to brain tumors and is convinced I am a drunk. What are my rights? Is there somebody around to help me and be a witness? How do we reach a resolution in the situation so that I am not falsely accused and I can go home?

I am walking my dogs or in a situation where I was planning to be alone. I bump into a person who wants to communicate and I am not prepared with pen and paper. Believe it or not it has happened and when I trained for the marathon I started carrying a small paperpad and pen in my hiking pants.

Very complex and requires prior thinking and preparation:
The plane is unusually turbulent and we are flying over the ocean. I am the only person who cannot hear and I have a major balance problem. In this particular case which I never considered prior, I decided it would be a good idea to read the instructions on where to find the life preserver, how to put it on, what to do in the emergency, and where to exit the plane. In the case of being in the dark and possibly entering the water and becoming disoriented, I had to think through what I would do and visualize the scenario.

Very complex (life dependent at the moment):
I am snorkeling and the water is a little wavy which is throwing me around (probably mild for other people). My mask is fogging up and I cannot see so I try to rinse it out on the surface and get salt in my eyes. When I shut my eyes I become disoriented even though I am wearing a snorkel vest. I end up with my head under the water and swallowing lots of salt water through the snorkel. I have a moment that I feel I am drowning and then a voice clicks on in my head "FIGURE IT OUT!" Due to prior experience and comfort in the water, I prevent myself from panicking and find a way to right myself and correct the situation. This was an interesting lesson that I feel I need more practice with and learned to adjust within a couple hours of the activity.

These are just some simple examples but I have found that everything I do takes prior thinking and preparation.

Walking and Hiking:
Is the trail uneven? Is it a difficult trail? Am I able to do this walk/hike?Can I do it with a hiking staff only? Do I need hiking poles? Is it slippery? Will we be walking around when it gets dark? If so, I definitely need to remember to bring my hiking staff (AKA - my cane) and head lamp.

Eye drops - always have to have them.

Pen and paper - always need unless I am in the company of all deaf people who sign.

Harley was recently disappointed to discover that I cannot get an accommodation for absolutely everything. I have known this for some time and although it is a bummer, it is just something that needs to be accepted. Yes every so often I see privately held classes on things such as gardening, photography, presentations on travels abroad, cooking, etc. held at community centers or hospitals for a very minimal fee or free. Some things I would have really liked to have gone to but I must choose to go to the things that are accessible.

I think prior to treatment I had a fantasy that there would be an end or finale such as completing a college degree. I dreamed that I would be restored back to where I was before. I probably thought this as when I had cancer I was one of the lucky ones. I grit down and beared the treatment, made it through, recovered, and went on with my life to do many things. With NF2 it is an evolution to become more adaptive in order to go on with life. One has to make a choice to accept the situation and decide what needs to be done to attain the optimum quality of life available.

I think I have come a long way, but still in the back of my mind I am holding out for that finale and completion. Reality that over 2 years has gone by now and that I need to keep going and pushing has creeped in my mind this past week. Thus the orgination of my overwhelming feelings and slight moment of burnout or wanting to mentally escape. Somedays I am still waiting to graduate from NF2 University where every day is a training day.

Where in the world is Rebecca??????

Hi! Merry Belated Christmas and Happy New Year!

Our power was restored last Thursday evening but we are still without internet access presently. I am at a library at a nearby town and need to leave so I will make this short.

We traveled down to Veneta, Oregon to spend Christmas with my parents and sister. Friday we got caught in the most horrific rain the whole drive down. We drove back up yesterday afternoon/evening and got poured on again! I swear they were the largest rain drops I have ever seen!

Shortly after we returned home the rain turned into snow. A friend staying with us left to spend the night at work and phoned to inform us that another tree had fallen across the road but he was able to drive around it. Hence I did not leave the house all day until it warmed and the roads were better. I am hoping that the weight of the melting snow is not going to bring down more trees and knock out our power again.

The wind storm last week brought about 5-6 trees down on our property (2 of the trees were very large and tall hemlocks). Fortunately the wind blew them in the direction AWAY from the house! It was a really nice Christmas present to have power restored after 8 days without.

Ok. I gotta go. No internet, tv, or news while living in the sticks so I cannot check the weather forecast. If you need to get a hold of me right away you can call WA state relay for the deaf at 1-800-833-6384 and then provide the operator my home phone number. Leave a message and I will try calling you back. You can still email me and I can read it when I am somewhere with access. I just cannot type back as I need an ergonomic keyboard like I have a home. Laptops are IMPOSSIBLE for me to type on (complications from NF2 which have compromised my dexterity and left me with numb finger tips which make me feel as though I have club fingers).

Lights Out! (No Power)

Today is my first contact with the outside world via internet and newspaper I found from last Wednesday in the building recycle bin. As a deaf person in a rural area being without power is such a disconnecting experience. 4 days without leaving the house and area almost gives me the feeling of isolation like in the movie "The Village".

This will be short as it is INCREDIBLY difficult to type on this lap top. It is the only means of communication I have for this evening to the outside world. The typing problem is due to the dexterity complication I have developed from NF2. This is probably taking me 10 minutes or longer to type this. I already worked VERY hard to write a nice note in someone's online guestbook but deleted accidentally (just before finishing with my dANG NAME!!!!!).

oK i NEED TO SEND THIS AS I ALMOST DELETED this too by pressing the wrong button.

Mom & Dad, we need to cook our turkey for christmas. it is thawing out in the freezer. hope to see you next weekend if we can get gas.

PLEASE READ EVERYONE

Notice: There are several grammatical errors in this submission. Please excuse the typos or mispellings and I will try to edit tomorrow. I am really tapped out right now. Oh yeah....have a good Monday!

(Sigh) I was not quite sure what to title this post but I do want everyone visiting this site to read this so you are educated and not ignorant. Ignorance can be very hurtful to the parties one is ignorant about.

Tonight was a particularily trying ordeal (very emotionally draining) with NF2 that I could have never imagined going through. In a flash I was completely stripped of my dignity. I suppose it could have been worse but I went through what NO person with a disability, impairment, illness, injury, or handicap should ever go through. Yes tonight without doing anything wrong or provoking or harming anyone or anything, I was forced in a position to prove that I have NF2, that I am deaf, and that I have brain tumors. Isn't that awful?

As you know by now if you have taken the time to read this or know me, you know that I am rather open about my NF2. Yet there are people with NF2 and other ailments and disorders that like to keep that fact personal from public and the strangers. It is their right and that privacy should NEVER be challenged!

Here is what happened. I am having a hard time writing about it without shaking because I was very emotionally charged and unprepared to be harassed or be put into this kind of scenario.

About 4:50 pm this evening I was walking out of a very popular warehouse store where I regularily shop and frequent. When I had parked before entering the store, there was not a vehicle next to me on my driver's side. Now however, there was a truck in the space next to me and I could not fit the cart or open the doors between our tow vehicles. I pulled out slightly so that I could freely open the double doors of my truck and load my groceries without touching the truck next to me.

As I was unloading my cart, a traffic cop on foot approached and tried speaking to me. I had no idea why he would approach me or what he wanted. Not wanting to be held up so I could get home in time before Harley would go to work, I faced the man and told him that I was completely deaf so he would have to write down what he wanted to say to me. Instead of complying, he kept speaking to me which frustrated me. Again I told him I was deaf and he needed to write down what he wanted to say. (I may have even told him 4 or 5 times.) I basically thought in my mind "You idiot. If you can't follow instructions them I am not going to waste my time with you." Thus realizing time is a commodity, I turned and continued to pack the groceries/boxes in the backseat of my truck so I could more my truck out of the way before anyone decided to drive though the far off corner of the lot where I was parked.

While I was loading the groceries he approached me again and wanted to speak to me. Even more frustrated now I was thinking to myself again (Big Sigh) "WHAT PART OF COMPLETELY DEAF - NO SOUND DO YOU NOT UNDERSTAND?????!!!!!!" I cannot be sure as I cannot hear anything, but it seemed like he got frustrated and motioned or said to look at him when he was speaking (secret that I want you to wipe out of your mind for all time.......I can lead read a little........If you don't want to get on the bad side of me and piss me off majorly..NEVER ask me that!). Like I said, I am only guessing that is what he said. I am not 100 % sure. So based on my thought or reception of the information, in my mind that is what he said to me. My response as I loaded the last item from the cart to the truck, "NO! You must comply with how to communicate to me as I am deaf!"

Keep in mind that my truck door was open this whole time. Once I finished loading I began to scan the parking lot for the caged area to return my cart. FINALLY, he took out his paperpad and pen and wrote to me. On it the words burned into my brain and stung like a sharp dagger into my heart "Are you drunk?"

Now how in the hell am I supposed to feel about that!? Here I was minding my own business just getting groceries and not hurting anyone. I actually felt really good when I walked in the store and thought how good I was walking today and that training for the marathon really helped me alot. I was proud of myself for accomplishing this and coming so far. Then some jerk totally deflates my balloon by asking me if I am a drunkard!!!!! I totally could not believe it! I could not withhold my feelings and I told the officer "Oh my god! I have never been so offended in my life!!!!! If you had any idea what I have been through you would not ask me that! I am completely livid!"

In disbelief and surging with anger, I told the officer I had to put away my cart. When returned I asked him if a drunk person would put their shopping cart away. There were innumerable carts scattered everywhere in the lot and on the plant medians as other shoppers had not been considerate enough to wheel their cart into the proper designated spot about 3 car lengths away. I was still really mad and could not believe this was happening to me.

I asked the officer for his name and badge number to which he would not comply. I could not see his name on his uniform as it was covered by a yellow reflective safety vest. The only words he wrote to me during this whole time were "Are you drunk?" "Your ID?" I would not give him my ID until he provided me his name and badge number. We seemed to have a little war at this as neither of us would give in. I told him that I would not give him my ID until he provided me his name and badge number first. I said if I gave him my ID that he could just blow me off and never provide his information in return.

I wanted to write down on his pad and he pulled it away. As a new deaf person two years ago I also had a run in with a cop who would not let me have HIS paper. Thus I always carry my own and went to my truck to get it along with a pen. When I returned he still refused to provide his name and badge number. This made me really angry and I told him that I was going to file a civil complaint against him and write about this incident on my blog which is read internationally. Failure to comply to my request? No problem I let him know. I looked at his hat which read "Issaquah Police" and wrote it down. Then I documented the time, date, location, and place where this all transpired.

While this was happening, the man parked in the truck next to me had returned to his truck. I noticed and got his attention. I had told him that I needed him to be my witness as I was being harassed by this cop who did not believe I had compromised balance due to brain tumors and that he thought I was drunk. (Yes I had already told him that I suffered from brain tumors and NF2. He had never heard of NF2 and I guess he did not believe me.)

The man was really nice and helped facilitate the communication by writing on my writing pad to me. The officer wanted a phone number of someone to call to verify I had NF2 (AND WAS NOT DRUNK). Because I use the phone VERY RARELY (the bulk of my communication is over email and instant messenger and I had stated this), I only knew Harley's cell phone number. Seeing as it was a half hour before he needed to leave for work at this time, he did not answer his phone (I imagine he was taking a shower and getting ready).

I was at a total loss after that on what to do. At some point I got out my hiking staff out of the truck and showed it to the officer explaining that I use it when going places where I have difficulty, am looking at scenery, or making many stops as in the Seattle Street Scramble I had participated in the day prior. When I shop I have a cart which helps me with balance.

It was only when I was requested to move the truck that I realized my keys were gone! The officer took my freaking keys either while I was loading stuff or when I put the cart away!!!!!! He would not give me keys back to me and I had to have the good samaritin witness man I pulled aside move my truck. The officer was willing to give my keys to a stranger (not the owner of the truck) and not to me (THE ACTUAL OWNER OF THE TRUCK)!!!!!!!

We were at a crossroads. The officer would not give my keys back, never provided me his name and badge number, and would not believe I had this condition. The poor witness man (who knows if he needed to be somewhere) was also held up trying to help. He did the bulk of the communicating and I am very GLAD he was there! He wrote to me asking if there was anyone else that he could call. The officer did not use his phone. Instead the witness man made these calls on his own personal cell phone. My mind was totally blank! I could not think of anyone's number! He asked for my parents number and I stated that actually my parents JUST moved to Oregon and I did not know their number (it is written on a piece of paper next to my computer with their new address).

We actually have a friend in Issaquah but I could not remember his cell phone number as I seldom communicate over the phone. I gave him a number to try but it was not a working number. I could not remember the correct number. Then I remembered I had a hard time finding their house at night and that the directions might be in the glove box. I was thinking maybe the number would be on their too. I went to go find it and I had so much crap stuffed in the glove box (all necessities I feel) that I could not find it efficiently. I was upset, bewildered, and had to reach over to the other side of the truck over the center console to try to access it. I thought to myself, "Well crap this is not going to work." To access it more efficiently I would have had to walk around to the passenger side of the truck in the dark which would show my impaired balance more.

Then a light bulb went off in my head! I remembered that I still had my Team in Training Emergency shoe tag from the Seattle marathon still attached to my shoe. They could try calling our program coordinator with the Leukemia and Lymphoma Society who could verify that I had indeed walked a marathon, was a cancer survivor, and had NF2. On the tag was also written my condition "NF2". Why would I be wearing this if I was not affiliated with the Team in Training and why would I lie on there about having NF2?

They could not get a hold of her but her name and organization was on the voice mail message. At least it was worth a try and another phone number as I had no others with me or in my brain. Then my witness man was talking to somebody. I thought maybe he got a hold of her. The cop wrote to me that his sargent was coming down. After all this, he still did not fully believe I was not a drunk and would not surrender the keys to me. He had gathered my name by my communication with my witness and my ID tag (keep in mind I still did not know his name or his badge number). He had written to me that he was not familiar with my condition and asked if it affects my balance. I then had to explain my condition and that tumors growing on my auditory nerves also affect the balance and facial nerve that branches out from the auditory nerve. I smiled for him to show him my facial paralysis.

When the witness man finished the phone call I asked if he got a hold of Megan with the LLS. He told me that he had not be was talking to his mother who is an IV nurse at Good Samaritin Hospital. While we kind of had an offshoot conversation about that (as I am quite familiar with needles with all the medical stuff and MRIs I get) the sargent showed up.

The witness man was very nice and when the sargent showed up and spoke with him he was free to go. The witness man (sure wish I had his mailing address to send him a thank you....I do have his name and number) shook my hand and wished me a Merry Christmas. He had stood out in the cold damp weather and rain with us for 20-25 minutes. Who knows if he had to be somewhere. In a very busy month, approaching dinner time, and in the cold rainy weather he stayed by my side to help and was a "good samaritin".

The sargent seemed accepting of everything and by then I had the chills from the weather and started to shake. The unnamed officer finally wrote that he was sorry and learned a lesson. I was not sure what to say but was really glad this ordeal was coming to closure.

He wrote to me that he was responding to someone's complaint to investigate if I was drunk. Apparently the complaint was when I was entering the store. The annonymous person said I was touching cars when I went in the store which is really bizarre as I don't touch other vehicles in parking lots for fear that I may set off car alarms and never know. In fact, as I walked briskly to the store entrance I thought of how much my walking has improved and that I actually felt somewhat like a normal person. I thought about what a great thing training for the marathon has been for me and I was proud of how far I came and had walked a marathon! I was pleased with being able to walk fast again! I was totally exhilirated before entering the store.

When the officer wrote to me that someone complained about the way I walked I was puzzled and totally sapped. It was as if someone shot a hole through my chest. To me that was more upsetting then the whole ordeal I just went through! I searched the back of my mind and knew for certain I did not touch or lean on any cars as I was walking in. I was not even by cars. I like to have wide open space when I walk and had parked in the back of the lot away from the conjestion of compact vehicles. The only thing I can figure is when I gassed up a the same store establishment. There is not a large space between the gas pump and one's vehicle. Therefore, I do ease slowly out of the truck and do put my hands on MY OWN TRUCK for stability while I am gassing up. There was a problem with my pump and when I entered my card twice kept telling me to reinsert the card. Therefore I had to get the attention of the attendant and walked maybe 10 feet within that narrow space where I would have had to put my hands on the side of the truck and pump for stability.

Of all the damndest things, eh? You would think with the massive crowds (that is why the store hired a traffic cop) and the approaching holiday season, that people would be busy enough already with their minds focused on other things. Instead though, some ignorant sap took the time to critisize a disabled person and assume that I was a drunkard.

I had a short conversation with the officer and sargent. I told them for future reference it is wrong and offensive to assume somebody is drunk. There are lots of sick and disabled people (more sick and disabled than I). I continued that it is not the right thing to do to assume someone is drunk (ESPECIALLY WITH SOME ANONYMOUS STRANGER'S WORDS). I stated that it would be more appropriate to ask someone if they are ok. From there one can smell if there is alcohol on their breath and investigate further. I told them that I did not have a disabled sticker because I felt there were other people who could use it more than I could. I posed "If I can walk a marathon, then somebody else needs that space more than I do."

I did not realize how emotionally upset I was until I left the scene. By the time it was over with it was too late to make it home to see Harley off to work. I tried to go to another store I wanted to stop at but I was so upset that I missed the turn and ended up going a direction where I could not turn around until I was far away. Instead I went to the party store to look at things for our holiday party next weekend. As you would figure the dang holiday stuff was in the front of the store.

As soon as I walked through the door I started to have a breakdown. It was so humiliating! I turned my back to the cash registers and focused on the dog printed gift boxes next to the door. I can't produce tears but I can do the motion and I imagine the sounds of bauling. I tried to hold it in and focus on these printed boxes but it was not working. I was about to lose it any minute. Nervous of making a scene, I belined to the back of the store where I hoped nobody would notice or hear me.

LOL I actually hid out in the costume section. I stared at fake armor and lady liberty costumes for a long time (I have no idea how long). I was weeping without tears and kept telling myself to pull it together. I tried frantically to find costumes or something that would cheer me up all the while I kept an eye out for other customers to hide my shame from.

I wasted time looking at Christmas cards even though I already sent mine out. I was desperate to escape what happened to me and find something uplifting. For some reason or another I thought about my non-production and the tasks that needed to be done. Why was I at the store? I thought about my grandpa and other people who have been through difficult things and a voice in my head said "Stand back up! Life must go on!"

I went to look at the plates and cutlery and I noticed a shadow standing in the space next to me. It was a salesperson. Geez and I was trying so hard to be left alone. I told him I was deaf and did not understand him but the young boy really seemed to want to help as he did not go away. I thought "Oh alright, I will play" and asked him where the plastic flute glasses were. LOL Oddly enough he led me to the other side of the store where the costumes were. When we got there I kind of chuckled and said "Oh. You must have misunderstood me. I meant the champagne drinking flutes". Thinking back this did cheer me! LOL It was rather cute.

He led me to the correct spot and I looked at the glasses and the different party plates. A couple minutes later he returned. I told him I had a list and was just checking things out. Surprisingly he had a little paper pad in his apron and pen. Wow! That is really cool I thought.

Unfortunately the store was closing and was not quite sure if I was ready to drive home yet. I went to Ross next door which is open an hour later. In Ross stuff was scattered all over and there was too many people in the store that I could not hide. I became paranoid of eyes looking at me and the scenario played in my mind of people looking at me like I was a freak or drunk and somebody calling the same cops. I could not shake my apprehension and feeling of suffocation. I kept thinking about whoever that person was who reported me as a drunk to that cop. I just wanted to go home and be away from everything (to hide in my home where I am comfortable).

I made the drive home and unloaded the groceries. I began to break down again as I was carrying things into the house. When I parked the truck in its spot I turned off the ignition and just sobbed.

It is the darndest thing to not produce tears. You just sob and hyperventilate but your eyes stay dry. You don't feel the nice wet salty liquid running down your cheek. In a way you feel like a fake or an actor pretending or betraying the true emotion. You don't know exactly when to stop or when it ends as you cannot cry your eyes out without tears. I kept feeling around my eyes in hopes of feeling some tears.

Even though I shedded no tears, it felt good to release all the pent up emotion alone in my truck. I don't live in a neighborhood so being in the warm dry truck was a safe haven where I could baul/sob and nobody would hear or judge me.

When I emerged little Jake was standing outside of the truck door. He heard his mommy's cries and was there waiting to cheer me when I came out. As soon as I stepped out of the truck and petteed Jake, little Katie came over too to put a smile on my face. They know when I am sad and they are always there to lick my wounds and heal me again.

Refreshing December

Ahh! I woke up this morning to one of the most wonderfully fantastic dreams! The dream started out as a regular marathon practice/walk. I had suggested some areas that I normally train/walk for a new practice (one of them being the King County Regional Trails on the Redmond Ridge).

It was odd. The first part of the trail was a nice path of compressed bark which was free of water and mud. Then at one juncture I wanted to take the group on an alternate route or loop. I had forgotten about the melting snow and the trail ended up being water logged and marshy like the mud lake trails in my grandpa's cranberry bog and cedar laden property in Michigan.

Interestingly my shoes turned into water boots which I happily skidded and tromped over the melting ice, snow and water. When I crossed the bog trail the field ahead of me changed into a perfect crytalline white blanket of snow complete with ski tracks over the rolling hills.

Somehow poles appeared in my hands and I began to glide along the trail in my water boots at an intense pace. The further and faster I went, the feeling of nordic skiing returned to my memory or being. I glided down the hills in a perfect tuck in my water boots as I once did on my light carbon fiber skis.

It was an absolutely amazing feeling! I wanted to go faster and faster. My lungs burned from the cold air but every breath made me feel more alive than ever!

I am not sure but perhaps my boots actually turned into skis in the dream. I remember being amazed that I could ski again and could vividly recall every detail of the skill.

When I reached the bottom of a large hill that I glided down in a tuck with tremendous speed and percision, I came to a sign where the trail went two directions. It was at that moment that I realized I was no longer on the Redmond Ridge but transported back to my favorite cross country ski trail on the Days River.

You see, before rollerblading, before diving, before waterskiing, before hiking in the mountains, cross country skiing was my love and my passion! I remember my grandparents gave me my first pair of skis. From there my parents encouraged me to use them and to compete in the UP State Games. My parents used to have land in Upper Michigan and that is what I used to do....ski all around our property and our neighbors'. My favorite time is when the snow would get very hard and the fields would be lit up from the moonlight and stars.

On weekends our family would ski the Days River trail and later I would return often on my own for the pleasure of solitude in the woods and competing against myself.

There was a moment in the Seattle marathon while crossing the I90 bridge that the memory of skiing visited me. I am not sure why. I wanted to go really fast. I wanted to have on a pair of skis.

I still have my skis (the last pair I owned). They hang in my house with my downhill skis like trophies on the wall of our stairs. I have not wanted to let them go. Not yet anyways.

After the marathon it has crossed my mind a couple times if I could possibly ski again. Prior, I had marked it off the list due to my poor balance. However, after this dream and the feeling I had in the dream I wonder. Like hiking, with nordic skiing you use poles. I may not be able to tackle going down the insane hills at heart pounding speed that I once did, but perhaps I could enjoy skiing on a flat trail. It would take practice but I have the memory of the technique with me.

The feeling in my dream was so incredibly exhilirating that I crave to ski again! The weather today reminds me of a good day skiing. There is some blue ski mixed with clouds, the air is crisp, the temperature warm, but still snow on the ground.

This definitely is a good way to enter the month!

Happy December! Always keep hope and find a way to go after what you would like to achieve! :o)

Check it out! I just completed a marathon!

Hey I just completed one of the top 20 marathons in the nation! On Sunday November 26 I walked the 26.2 mile course of the UW Medicine Seattle Marathon in 6 hours 47 minutes and 39 seconds (06:47:39).

I started a blog about it titled "Rebecca Dufek's Seattle Marathon Blog" and that is where I have been this past month. Come visit me over there and read all about my experience with the Team in Training program with the Leukemia and Lymphoma Society, find out why I did it, how it relates to me, and see the several photos I have taken over the past month and posted.

Goto: http://360.yahoo.com/bluediverbeck

or click on the lighthouse link in the post title above to get to the same page.

The Throb

Yes I know....lame post title. I was not quite sure what to call this. It is time once again to start jotting down my medical and symptom notes which some may find frightening or boring. If I do not record it however I will forget it (as is starting to happen already).

The question is: Is it a symptom? Is it the oncoming of a cold or illness? Is it a migrane? Is there another tumor growing or working its wickness?

This is what goes through the mind of someone with NF2 or even cancer or any other serious illness in which symptoms or signs of something more pertinent
needing attention would appear as just something ordinary to other people. Did that sentence make sense?

Sometimes when something occurs I get so used to it that I start to make myself believe that it is normal or I withhold from doctors thinking I may seem like a hypochondriac or the problem will just go away in a few days.

Here is the deal:

Saturday was my longest marathon training (4 hours). I felt fine the morning of, during the training, and afterward. However, Sunday morning about 5 or 5:30 am I awoke with an excrutiating headache. Was it actually excrutiating? Hell I don't even know anymore. I have gotten used to pain and all these side effects that sometimes I just think it is normal.

At any rate, I had to take some pain relievers in order to go back to sleep. I convinced myself that I was coming down with whatever ailment Harley had when we returned from the SW. Therefore, I started popping vitamin C and echinacea like mad and making sure I had adequate rest. I even bought this bottle of "Emergen-C Immune Defense" tasty rubin lemon honey losenges. They were kind of like sweet tart candy or chewable vitamins that fizzed in your mouth.

Despite my drinking of echinacea tea, 100% vitamin C juice and my supplement popping, I continued for days to have the throbbing headache concentrated mostly in the front of my head and behind the left eye. (Note: On Friday and Saturday of last week I experienced some mild jabbing pain in my ear as if the start of an infection. At the store on Wednesday evening, the pain also included the back of my head and the left side of my neck or region around my ear.) The area mostly concentrated on the left front side of my head behind my eye. Is that where I have that other big meningioma??? The pain also made me nauseated which I thought I was done with. I hate being nausous. I had to eat however (which helped the nausea) because I could not take pain relievers on an empty stomach.

This happened daily throughout the week at various times of the day. We went to the grocery store after our walk on Wednesday night and I could not tolerate really to look at stuff long or even be there. It occured again and was making me sick. Again yesterday late morning I felt nauseated and got relief after having a yogurt.

Today I seem to be doing pretty good. The last couple mornings however, I have awoke to slightly swollen eyes (the skin on the eye lids). Both evenings I got plenty of sleep.

The headache has not occured yet today so I am at a crossroads on what to do. Do I email all my doctors and tell them about it? I don't think I am feeling stress right now that I am aware of. Last eye visit I had my neuro-opthamalogist thought I might be having stress headaches. Fortunately the pain seems to be relieved through a non-aspirin pill. Normally I have depended upon I-B profen and at certain times over the last couple years I only experienced relief when taking Excedrin.

Like I said, I have to log it here so I can keep track or I will forget about it or what happened. It is hard to know whether I should cry wolf to the doctors when I actually don't know if it is a wolf.

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.

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.

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

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.