Friday, December 31, 2010

Year - sign for thursday 12-30-10

A little overdue with the sign of the day

I spontaneously went into the mountains with a cancer survivor friend to try cross country skiing. It proved rather enlightening for me after 14 years since last and after losing all my balance to brain tumors. That will have to be another post.

Here is the sign for "year":
(click on the link)

The photos included are some of the highlights of 2010 for us.

photo 1 - Harley and I celebrated our 10 year wedding anniversary. The photo of us was taken at the roof top of an exclusive club at Ceasar's Palace in vegas where the Gold's Gymj convention members were invited to a private party.

photo 2 - pictured with the other Gold's Gym international finalists for most inspirational member of 2010, Jennifer Heideman from Ontario Canada on the left (also a competition body builder) and on the right Danielle Camp from Grand Junction Colorado

photo 3 - Harley and I fulfill a 10 year dream of hiking on Kilimanjaro in Africa together to bring awareness attention to NF2 (and bonus we had a movie made of it to be submitted to the Sundance Film Festival! Who knew that either of us would be involved with something like that when we were born??????)

Wednesday, December 29, 2010

New - Wednesday's sign

Click the following link to see how to sign "new".

My sister bought me a running skirt with matching sports bra. As the story goes, we were running in the Seattle Rock and Roll marathon last June and spotted a lady wearing this skirt. I totally LOVE running skorts and have been on the lookout for them over the past year.

While in Africa, my mom and sister surprised us with their own "while you were out" episode by painting our bedroom. We were still using a queen size comforter for our king size bed! hehe So my mom got us a new comforter of the appropriate size!

my sister with her new pjs

Christmas - sign for 12-28-10

Click the following link to see the annimated sign for Christmas.
Now put the 2 signs together to sign "Merry Christmas"! :)

Tuesday, December 28, 2010

Yesterday's Quote of the Day

"Be the silver lining in another's cloud."

I found this on the wrapper of a piece of Dove chocolate yesterday and found it to be a good one to share. I like it! Personally I see it as a good reason for living.

This goes back to the "why" of doing things which motivates you when you understand the reasoning behind the choices you make. For an EXCELLENT discussion of this topic
watch SUCCESS magazine author Darren Hardy's video blog series about "Living Your Best Year Ever."

Igniting Your Indomitable Inner Power by Darren Hardy

Monday, December 27, 2010

"Merry" - sign of the day

So for those reading for the first time or have been out of touch with me and my life over the past 6 years, I am now completely deafened. That means aside from being able to feel vibration, I would have no idea if someone set a bomb off behind me. I have no hearing whatsoever.

While many of you will lament, think that is the worst fate in the world, and pity me I will tell you to NOT! It has been a challenge and there are times of frustration, yet I have learned to be confident with who I am and adapt to a change that has ironically probably made me for the better.

I have definitely learned patience, how to be a better communicator, how to enjoy the visual in the world which is totally surreal to me at times and fascinating (whereas I think a greater percentage of hearing people completely and saddly miss these wonders), to explore imagination more, and to problem solve how to be more productive or utilize my time for my enjoyment/benefit when people are engrossed in chatting away which often is not that important anyhow (perhaps a joke or some blather about weather, the score of a game, or maybe even complaining). My advantage of deafness is being able to filter these things out and concentrate my energy on more important things.

Anyhow, to enhance communication between people (most especially loved ones and those involved in a close relationship with me), it behooves us to use every tool available for communication. While I do not REQUIRE people to learn sign language, those who do make the effort forge a deeper bond with me. Just as I do my best to understand the needs of the hearing - joy of music and dance, need for conversation, sound, adapting to MANY different handwriting styles to read those that prefer to write, and YES bending to try to lip read some and be patient - people who make an effort to sign are in tune with meeting me in the middle on an even playing field. In other words, they care about the relationship enough to also empathize and step out of their role as a hearing person as I have had no choice in the matter. To me that speaks volumes!

No, people do not have to be perfect or fluent. I am not even fluent after signing for over 6 years. I use a form of sign language known as PIDGIN - ASL signs in English grammar format. With my visual impairment, sign also needs to be slow, large, and sometimes repeated for me to fully see the sign intent.

I GREATLY appreciate the effort as it certainly comes in handy for situations where writing does not work out or is not practical (such as outdoors in the NW rain which is quite common, on a walk some place to get exercise where it is irritating to keep stopping to write and read, and situations like eatting when I want to sign to sign someone because my mouth is full. It sure is nice when someone can understand me because I do not have the best handwriting anymore.

Understandably, it can be a challenge to find the time to take a sign language class and to coordinate getting together to practice or learn sign. Therefore, Harley came up with an idea this weekend where I can meet people's needs near or far at the same time and also leave the table open for those who may be interested that I do not even know. So I am going to try it out in the new year.

He thought of me posting a sign of the day which I can also email to those interested in learning/receiving it. That way people who do not have a whole lot of time are not overwhelmed but learning a little bit at a time. I'll try out the sign of the day to see how it works and maybe drop down to sign of the week or every few days.

To get the party started I am going to begin with the sign "Merry" which has relevance to this time of year with BOTH Holidays as the sign "Merry" and "Happy" mean the same thing in sign language. Hence the sign is the same for both words. Tomorrow I will show you "Christmas" so you know how to sign "Merry Christmas" and you also have a head start on "Happy New Year".
Click the above link to play the annimation for the sign "Merry".

hehe I have posted a photo of my trainer/kili teammate Merrie here as her name sounds the same as "Merry". Thought you would like that girlfriend! ;-)

By the way, Merrie does have a name sign and no it is not the same as "Merry". So I guess I am giving you 2 signs for today. Her name is the sign for M moving over the biceps muscle to signify Merrie is a personal trainer at the gym.

Merry Christmas!!! (2010)

The holidays have proved really busy! We hope you enjoy our Christmas card of the year along with a couple holiday photos.

I am very happy to report that our Christmas wish and prayer came true! We have reached our fundraising goal of the year for the Kilimanjaro NF awareness project. The trailer is truely spectacular and I will share it with you once we have final approval. Now we will be moving on to having the film put together so it can be submitted in time for the 2011 Sundance Film festival. Yay! How exciting, eh?!

This is truely a remarkable gift and stunning surprise that I could not have anticipated going into surgery last year. What an amazing development very quickly in a very short span of time!

We are so incredibly grateful to all of you who have supported us via donations, sponsorship, participation, encouragement, enthusiasm, ideas, inspiration, motivation, committment, dedication, faith, celebration, and most of all PRAYERS! Without the culmination of these attributes and coming together, this just could not have been made possible. I will forever be indebted to you for helping me initiate a major mission in life and carrying out the vision I have kept near my heart for many years!

As a successful and gratifying year of accomplishment comes to a close, I thank you for being a part of it which has provided me a meaningful purpose for living and continuing on. I GREATLY look forward to the possibilities and future developments/wonders of the year ahead. Thank you for joining me on this marvelous journey which God has chosen me for!

Wednesday, December 08, 2010

A Warm African Welcome

The hotel was marvelously decorated with African culture decor and wildlife. In the bathroom were these lovely light sconces of beautiful African ladies.

Packs-N-Roses :D

After a long ride to the Dik Dik Hotel, everyone offloaded their packs near the fountain decorated with a wonderful variety of African birds. Note the little rose bouquets we were greeted with at the airport. In our rooms were vases to keep our flowers in.

A gorgeously decorated table setting with little lady bugs made of clay and real ferns awaited weary travelers where our dinner served to us.

Saturday, December 04, 2010

Arriving in a Foreign Land

The first picture of Kili teammate Eric at the Kilimanjaro Airport

Chris and Shane at the Kilimanjaro airport looking as fantastic as always with camerman Ron looking on amongst the crowd

everyone looking pretty exhausted and ready to finally arrive the hotel for food, shower and sleep (Shane, Pedro, Merrie, and Jason)

After over a day of travel on 2 long international flights, we finally arrived the small Kilimajaro airport in Africa. Now think of US airports being huge, having several gates, many restaurants, clean with nice seats at each gate to sit in while waiting, often a fancy and tasteful decor, and a very structured/orderly customs processing area. This is definitely what this small airport is NOT.

When we arrived it was hot and non airconditioned. Notice the simple but old fan adhered to the ceiling above Eric's head with flourescent bulbs without covers. Next you will notice it that it does not appear people are really in an organized line. As a matter of fact there was really no organization to getting through customs and just a harry mob of tired sweaty travelers pushing and shoving their way to one small window where african men seemed to picking out people as if bouncers at a club. The airport definitely had no decor
as you can see from the photos except for a few advertisement banners. Other than that, things were VERY simple and not particularly a place of a clean or sterile environment. At least there were toilets in the bathrooms as opposed to holes in the ground which we would encounter in many places later.

Being deaf, it was critical for me to not loose my group in this crowd and to stick like glue next to Harley who would communicate for me and sign. I had a rolling carry-on bag with me as well as carrying a second bag on over my shoulder to manage within the mass of people persistent upon getting to the front all while I had to tackle with imbalance. A very rude group of international travelers with maroon passports seemed to have no patience or regard for anyone else and kept attempting to cut in front of people or would not give me any space and push from behind. I finally became fed up with one man who kept trying to get in between Harley and I so that I would become lost within the sea of people. Finally I spoke up and told the man that I was deaf so I NEEDED to stay with my group to not get lost. I further indicated that my husband was in front of me and had to communicate for me. Then the guy sort of backed off. Geez louise! Where were these people from? Whatever country, that is certainly not the place for me to be!

We stuck next to our guide Tim who handled things for us (appeared to be bribing and we each had to pay the men). Within the crowd we seperated from Merrie and Pedro and waited for them in the baggage claim. For some reason, the men in charge of granting people through customs were skeptical of Pedro's passport. They had some issue before they let them through.

All together once again, we met some more african men who guided as through the darkness to our van type vehicle where they efficiently tossed our bags up through a window to another man catching them to stack in the back. We were greeted with a glass of champagne and a little bouquet of 3 red roses. More what looked like negotiating was going on through Tim with Harley was over there too. Meanwhile, another african man who did some luggage loading tried talking to me. I think he wanted money but there was absolutely no way for me to understand him (especially in the dark! LOL). We stood there and he kept smiling at me. I told him I was deaf and could not hear him so he needed to communicate to my husband. Oddly, he then kissed me on the cheek, smiled again, and stood there waiting. Apparently but unknown to me at the time, he did not speak my language so he had no idea what I was saying either. He was expecting a tip from ME so he was doing everything he could think of to appeal to me for money of which I had none.

After all the luggage was loaded up and tipping taken care of, we piled into the vehicle with our luggage crammed to the ceiling behind us. The ride was then another 45 minutes before we arrived the hotel. As I looked out into the blackness of the night, I wondered if there were any lions or tigers out there wandering aside the road. My daydreaming was interupted from the lights of an approaching vehicle. At first I slightly panicked that our driver was going to collide head on with with the oncoming car because he was driving on the wrong side of the road! Then it passed us in the opposite lane and it really dawned to me that we were now in a foreign land much unlike our own.

Happy December!

Sorry for the brief interuptions in posting. A short period of the internet being down, the holidays with family visiting, the marathon event, and priorities of other tasks have taken precidence over time to blog. But hopefully now I can regularly update you and get back to the Kilimanjaro trip. I will pepper in a few things which have taken place back at home too. The first of which being our first snow of the season which hit us right before Thanksgiving and is now all melted. We had it just long enough for the holiday and then it melted in time to clear the streets for a safe half marathon run in Seattle for 3 of us from the Kili team on the 28th.

Merrie (my trainer at Gold's gym), her husband Pedro, and I all ran in support of the Help Stop NF2 foundation and to continue our fundraising campaign for the NF awareness movie project which will feature our Kilimanjaro expedition.

Here is my latest message about the status of the Kilimanjaro project and an update on how we did last weekend:

Help Stop NF2 Greetings

Tis the Season to Spread Hope

We all did it! - 13.1 miles in about 2 hours! We have been going nonstop for this cause to bring hope and inspire the world.

Last year after surgery I walked the Seattle half marathon and this year I ran it! It was not an easy run though. As soon as I crossed the finish line medics escorted me to their tent to take my vitals. I felt dizzy but apparently it appeared that I was near collapse. I am willing to go through such lengths however if it means convincing another patient to not give up, motivating others to seek their dreams and discover joy in their lives, and eventually improving the life of a child one day through a cure for NF.
I will struggle to climb a mountain and run miles through a grueling course or harsh weather.

This is what that I aim to accomplish within my lifetime and I need your help to get it started.

Our first phase in the Help Stop NF2's awareness campaign is a movie documentary which includes our climb of Kilimanjaro. Not only am I sharing my life story to familiarize people with Neurofibromastosis, but I have set out to share joy and perseverance with ANYONE who needs or craves it.

That said, I am still in need of $3,405 to achieve this phase of our mission.
Could you please lend a helping hand of $10 or more to inspire the world?

Donate online at
Mail a check to

Help Stop NF2
8201 164th Ave NE Suite 200
Redmond, WA 98052

May you all remember the importance of the season this month and strive maintain a healthy balance!

Blessings for happiness as you prepare for the holidays!

Rebecca Dufek
Help Stop NF2
Endurance Charity NF Athlete
Gold's Gym International Most Inspirational Finalist
Brain and Spinal Tumor Survivor of NF2
Hodgkin's Lymphoma Cancer Survivor



Sunday, November 28, 2010

Last Vestiges of Fall

the last of the fall colors in front of Redmond City Hall and the police station next to the Sammamish River trail where I train

Happy belated Thanksgiving!

We are very grateful for life and the incredible blessings we have savored over the last year of a spectacular recovery following a second major brain surgery. (Incidentally I have experienced 4 life threatening trials in my adult life: cancer/chemotherapy treatment, radiosurgery for an aggressively growing brain tumor, brain surgery on 2 tumors crushing my brain stem, and 2 years later brain surgery for 4 more tumors compressing my brainstem).

To show our appreciation for life and the gift of good health, 3 of us from the Kilimanjaro team immediately jumped into training to run the Seattle half marathon this month. For me it was tough and painful but is nothing compared to what people with Neurofibromatosis and cancer go through. Many with NF2 and NF1 cannot even run. So why not utlize the gift God have given me to help those in need? Engaging in sports to inspire is the purpose I believe I was meant for.

This was a challenge to get ready as I only had 5 weeks to train following our return from Africa. The weekend before thanksgiving I went on my final long training run of 8 miles before the half marathon event which was today. I was very fortunate to enjoy a good run on such a fine day and capture the very last of fall color we were hit with snow the next day.

Wednesday, November 24, 2010

Getting Closer

The sunset gone meant we were almost there and would be landing at the airport shortly where we would wait among a sardine packed mass of sweaty tired international travelers through a bizarre customs approval window.

Flying Over Africa

After over a day of flying and crossing major time zone changes, we are finally approaching our destination - Kilimanjaro Airport. As we were flying over Africa, we were welcomed by a lovely sunset.

By the way, flying over the desert looked pretty cool but I don't know why I did not get a picture of it. I was second from the window seat and I think I recall that there was too much sun coming in the window.

Tuesday, November 16, 2010

Cancer Climber Founder Sean Comes to Town

It is about due time for a reflective post. I decided the above title topic would be a good one to tie in with the Kili trip story and how Sean Swarner fits into all of this. If you do not know because you don't know me well or have not been paying attention, Sean is a HUGE source of inspiration for me. His altruistic example really ignited the fuel for this path that I have followed for the past 5 years.

Flash back to spring 2004 when everything came to a screeching halt. I think God had something bigger in store for me which took me a few years to see. I was about to graduate from the University of Washington Masters in Teaching program for science. Although I was losing A LOT more hearing and feeling increased pressure in my head, I was eager with plans to continue onto the next phase of life with my peers. I had it all worked out.....have fun teaching throughout the school year subjects I love (preferably my dream classes of marine biology, oceanography and geology someday), spend the summers traveling and engaging in diving research/educational projects abroad, start training to become a mountainier and of course do more diving in the PNW. It sounded like the perfect plan and life. ;-) But then on the day of my final graduate presentation, on our way to the University, Harley and I recieved the news that one of my slowly growing tumors had increased in size by a WHOPPING 1 cm. Since diagnosis in 1999, the tumor had only grown a minimal of 0.5 to 2 mm on a yearly basis. Thus, 1 cm was ENORMOUS!

I think I made it through my presentation because my mind was simply unable to comprehend the seriousness of the situation. I couln't grasp the very REAL possibility of life changing as I had known it along with my perfect plans. Aside from a problem with my lips sticking together while speaking - maybe it was a combination of nerves combined with subconcious worry over my medical future that brought on a horrible case of dry mouth - I made it through the day relieved to be finished and on my way to getting the degree I had worked so hard for over the last 2-3 years.

Immediately after graduation, we left out of country on a trip we had planned. Therefore, we were able to further delay thinking about the gravity of what was about to happen. When we came back, a decision had to be made neither of which was simple. We could no longer decide to do nothing and a definite treatment had to be chosen. For fear that surgery would either kill me or leave me with worse......permanant life altering damage, I chose the radiosurgery route. I thought it would be the easier of my choices with very minimal side effects and a fast recovery time.

Easy nor a quick recovery was not to be! I could write a very long post about all that has ensued over the following months and years but I will save you the time and space to give you a brief synopsis......

Instead of being hit with very bad side effects immediately after like chemo, I was hit with waves that dragged out and continually changed and worsened over time. At least for me, when I went through chemo for cancer 17 years ago, the beginning hit me the hardest and when I was the sickest (1/3rd into it). A point finally came within the 6 months of treatment where I began to feel better and hope seemed brighter. I started to get back to the person I was before the chemo. It is not so for NF2.

First of all, I told you that I was losing hearing. On the third day of treatment I was rendered permanently and completely deaf meaning unable to hear the loudest of sounds such as thunder, a bomb, and a rock concert. Now that might not seem so bad. In fact I now view it as a minor annoyance at times. However, to be raised within a society dependent on hearing and abruptly thrown into a world of not being able to percieve sound anymore takes a great deal of adjustment. There is not total silence because the brain often creates tinnitus which is ringing in the ears that can take on the most maddening sounds! One must learn to channel out the distraction and rely on other senses in order to function and fit into society again. It can be overwhelmingly stressful.

Hearing loss was not even the half of it! Over the next several months my balance function deteriorated, my eyesight and facial function decreased along with memory and comprehension, and I experienced bouts of sickness and fatigue. For a long time, YEARS, I could not even feel my feet and fingertips nor cry. It was quite an ordeal to tough out and one that left me vulnerable and on the verge of losing hope. Unlike my 7 month cancer experience, things continued to DIGRESS instead of PROGRESS. I also looked pretty horrible within the first year from taking steroids over such a long period leaving me with weight gain, bloating, acne, teeth crumbling, and my face swelled up like a water balloon. To say I was heartbroken is an understatement. I was DEVASTATED!

But anyway, back to how I got out all of this.....Finally almost a year later the radiated tumor stopped swelling and I got off the steroids. With medication for my eyes and no longer needing to depend on steroids to function, I began to have some improvement.

One day a letter came from the Leukemia and Lymphoma Society with Sean's story about surviving 2 cancers as a kid both of which he was given a very poor chance for survival (3 weeks to live for the first cancer). Against the odds he surprised all and grew up to become an accomplished mountainier. With partial lung capacity, he climbed the tallest mountain in the world - Everest - to bring inspiration and hope to everyone affected by cancer.

When I read that I felt moved. I had the desire to inspire others the way he had inspired me to come out of the darkness. Sean had the same cancer I had. Surely if he could survive through a terrible ordeal AS A KID and live to do something superhuman for a very meaningful purpose, I could get off my self pity duff and do something too.

At the time, my grandfather was diagnosed with another cancer after 14 years of remission. Only this time the second cancer was eating him away very quickly. I felt helpless as I lived all the way across the country. Motivated by Sean's example, I chose to take on something I could do which was my participation in the American Cancer Society's Relay for Life in my grandfather's honor. If I could not save him, at least I could help save others by fundraising for research and patient education and support. What was to be my participation in a team flourished into me being team captain leading the team voted with the most spirit at the event.

Over the years I followed Sean as he climbed the tallest mountains on each continent carrying the names of cancer patients on a flag he buried at each summit. In fact, my friend Skip, my grandfather, and I are on the flag of his final 7 summit tour on Denali in Alaska. I sent texts of encouragement to their team and followed their progress on his foundation website, Cancer Climber.

Part of what his foundation has done in addition to funding research scholarships, is providing adventure grants to young cancer patients. One grant was honored to a boy with brain surgery who climbed Mt. Whitney on crutches! Wow! To me that was most incredible and unbelievable! After learning that someone could hike with crutches, I started to believe that I could hike again with hiking poles if I worked really hard to overcome my balance dysfunction. So little by little I began to slowly get into hiking again over the years - LOTS of walking, some running, and an easy hike or 2 a year, easy being usually an accessible path or trail for MOST senior citizens and young kids.

In fall 2007 I had my first brain surgery which provided me with many improvements. Granted I was far from being 100% restored but I could cry again, feel my fingers and feet again helping compensate for my loss of hearing, and the swelling which endangered my eyesight was gone. Further, I joined the gym and strength training combined with water aerobics greatly improved my stability. I was enjoying feeling better.

Following over a year of things FINALLY progressing, the idea of climbing Kilimanjaro reawakened as perhaps a possibility one day. On facebook, friends were sharing their bucket lists and Kili was on the list of my NF friend in Austrailia. Openly I admitted I wanted to climb it too and commented how it would be very cool for us to climb Kili together in support of NF. She has NF1 and I have NF2. It is kind of funny because at the time, I was VERY FAR off from being ready to do it. I had not even REALLY gotten back into hiking yet. That would start in June 2009 after I finished training to run my first half marathon.

Somehow on facebook Sean got wind of my desire and was leading a Kilimanjaro trip in summer 2009. He sent me a message about knowing I want to go which made me further believe that it could be possible. However, there was no way I was prepared to go within a few months. First of all, I was told in April 2009, only a week or 2 before my half marathon, that I needed another brain surgery. :( Argh! Second of all, I was not conditioned for that kind of hiking nor would there be adequate time for me to train even if I did not have to get brain surgery.

So I spent the summer hiking with my cancer survivor friends and having fun before possible impending doom of the surgery. I dragged it out and delayed the surgery as long as possible deciding October would be a good time to have to be laid up. LOL We did however have in mind Kilimanjaro going into surgery. My surgeon was confident I would be able to tackle it. It all hinged on how I fared through the surgery and coming out of it. Perhaps that is another incentive that kept my atitude positive and my will to live strong.

A few weeks ago, I had the blessed opportunity to meet Sean in person and see his presentation at the Children's Hospital in Seattle. Another fantastic treat is that I got to see footage of him burying the cancer flag bearing the names of my grandfather, my friend Skip, and me on Mt. Denali in 1996 when he completed his climb of the "7 summits" - the highest mountain on all 7 continents.

Thank you Sean for all your inspiration, motivation, and fine example! You are a hero! :)

Before and After 18+ hours in flight

Obviously the bottom photo is off us before we took off from Seattle. The top 2 photos are of Harley and I during a short layover in Amsterdam. Note how Harley's energy has remarkedly decreased. LOL I don't know if he even slept on the first flight. So by the time we reached Amsterdam he was coming down.

Wakey Wakey! We're landing in Amsterdam!

Check out the dude passed out behind Ron!

Sunday, November 14, 2010

Zonked Out!

Here is something else you will not catch in the film. While the 3 of us were like kids hyped up on a sugar high, our producers were wisely catching some Zzs.

Merrie finally crashed and burned. She doesn't even have her head in the headrest anymore! LOL

Danger! - Long flights can lead to ridiculous silliness

Can you believe this? LOL We must have gotten really bored that we sought amusing entertainment by putting a plastic bag on our heads! This is what people used to being up and working out do when they are confined to a seat squished between others for hours. As I said earlier, I think Merrie and I were wound up from eating chocolate. I do not know if Harley had any, but he was pretty wound up anyway about the trip like a kid on the way to the fair.

I do not even recall the guy sitting next to me on the plane! His jean jacket is vaguely familiar now that I see the photo but what his face looks like I have no clue.