A Summer To Remember

The pictures -

top: me standing outside our room at the Scuba Club Cozumel dive resort

Middle: Harley and I dressed for our last dinner at the resort

Bottom: Photo by Harley of me at Panorama Point via Paradise at Mt. Rainier last Monday August 30th.

I have been gone a long time...few posts. I have been busy. Where do I begin?

A greater portion of the past few months has been about obtaining goals, or rather shall I more accurately define as seizing opportunity for which I have used goals as a motivator to get me there.

That is the important thing I will stress about shooting for a goal..It forces you to take action in pursuing the life you desire. Without them, you can fall into a lazy state with yourself feeling you have all the time in the world. Then soon enough you may discover yourself 20 years down the road saying "There is always tomorrow" when you come to the reality that there are not many tomorrows anymore.

When you survive cancer, endure a terminal illness, or live a life of uncertainty, it creates a sense of urgency where you want to do everything before time runs out. Having escaped surgery last fall and the news that I was doing so great that the risk was too high to do another surgery at that point, I thoroughly looked forward to enjoying 2009 and the NW hiking season in particular. I was so elated and confident, that I conjured up the courage and strength to train to RUN (not walk) a half marathon in May to raise research funding and awareness for NF2.

Although the hiking season began in April, I held it off until after the marathon event as I did not want to jeopardize my ability to complete the event for which sponsors and patients were counting on me. I also did the same last summer when I trained to walk a long distance trail in September 2008 for the same reason. So with the 31.5 walk and half marathon out of the way along with the stresses of fundraising, I was looking very forward to time off from everything to just enjoy my passions of hiking and diving the summer away. Due to the all the periods of illness and the side effect of damage to my vestibular system following radiosurgery in 2004, I was not able to fully partake in these activies until this year. Therefore, it was even more significant that I "seize the day".

During my March followup MRIs the news was not good. After reading the report for the first time in the office before seeing my radiation oncologist, I swallowed hard and tried to hold back the tears when the words "growth" and "increase" popped out at me. I did not want to scare my husband Harley who had yet to see the report. So I just became quiet and tried my best to smile hiding the fear behind the lenses of my eyes. After 14 years together however, I am not so successful at hiding things. I really could not speak so when he sensed my panic asking what was wrong, I summoned up a smile and barked in a weakly crackly perhaps high pitched voice "Nothing".

When moments of panic like that set in, I try really hard to push it deep down and focus on something else. That is the way I survive and get through what I have to get through. Otherwise, fear would paralyze my mind throwing me into a deep pit of depression and anxiety.

I scour my reports and like to be on top of everything. With a medical situation as complex as mine, I don't want anything to be overlooked. Understandbly, that is why I was reading the report before the doctor came in. I request and demand it. Seeing I have to multitask with reading captioning and looking at images at the same time (which is no easy feat let alone comprehending it), I like to review the report first so I can be armed and prepared with my questions. In this case, the growth was sort of overlooked until I brought up and questioned the statements containing "growth" and increase". So then we consulted the film images on the computer for a confirmation on the measurements. (You have to understand, I have so many tumors that it is complicated to get a precise measurement and keep track of them all. I am an unusual case in the realm of brain tumor patients typically seen - not NF2 patients however).

As I had worried, there was indeed growth that we dicovered on the images. A tumor we thought would remain stable had actually grown and fused with the larger more critical tumor. Once again, there is significant compression on my brainstem by the 2 tumors.

When all this is going on, I have to put on another hat and step out of the emotional role as patient and instead approach the situation as a med student learning of a case or a parnter trying to solve some sort of important problem. It is not easy to do this but I think for the entire year if I am remembering correctly, I held it together and did not break down in the doctor office (3 visits with 3 different specialists on both east and west coasts). Everyone is in agreement that surgery is the recommended course of action (including specialists in LA and Stanford).

My appointment with my neurosurgeon was April the week before the Eugene marathon. I could not even comprehend the seriousness of a brain surgery let alone get into the medical frame of mind. So unlike me, there was no long list of questions I prepared or really any dwelling I did about the growing tumors. My focus was more on my major upcoming athletic feat and meeting my fundraising goal of $5000 which I increased to $6000 once I attained my goal by the end of the week.

Partly because I got away without needing a surgery in the fall, we questioned whether I really needed one now. Afterall, I was in the best athletic shape of my life and about to run a half marathon which is 13.1 miles! It is by far the furthest I had ever run! My surgeon said the situation was now getting "scary" as the tumors were on the move. He wanted to address it while I am healthy and not wait until I am "sick".

I just could not bare the idea of blowing my whole summer on a recovery and missing the hiking season while I pined away waiting to get better. I already know what that is like from summer 2004. I also was anxious to get back to diving that I had restarted last September. I was basically tired of putting my life on hold so many times - mono, cancer, school, more school, radiosurgery, brain surgery, etc. - when does it end?! I did not want to wait again to dive and hike until after another surgery. What if something went wrong and I became paralyzed or I am sent back to the drawing board with my balance (falling over just closing my eyes while standing in my kitchen). No way! Seize the moment when it presents itself and ride it out for as long as it lasts!

I remember my surgeon understanding my busy lifestyle but advising me that this matter was an important situation to address. My response was that I could not do any thinking about it or make any decisions until after the half marathon I was to run at the end of the week. In order to accomplish what I had set out to do, I needed my total focus on only that - finishing the half marathon.

On the way back from the marathon we stopped outside of Portland and met new friends Vaughn and Donna (brother and sister). Vaughn, a wonderful man in his early 40s, had overcame a horrendous ordeal with NF2 post Gamma Knife radiosurgery where he suffered a stroke and was confined to a wheelchair for a period of time. Through lots of hard work and resilience, he has amazingly regained the ability to walk with the aide of a cane.

Ultimately, I think I decided I was going to live out this summer as best I could and hold off surgery until the end of August. My encounter with Vaughn and learning of his story, I think helped me to solidifiy my decision. I do not think I even contacted my surgeon back until the end of May and suggested a late August surgery date but had not committed to scheduling one.

Putting the surgery back out of my head, I concentrated on recovering from the marathon, getting psyched up for hiking season, and finishing my fundraising. Well intentioned, friends tried encouraging me to take on another half marathon and NF fundraising endeavor in June, but I held steadfast to my commitment of a "free" summer to live my passions. I have to admit, it was sort of enticing and I did ponder it, but I also remembered my committment to Harley to do some diving and help out with other things this summer. The training and fundraising takes up a lot of my time and not only is it a personal sacrafice but it is also a sacrafice loved ones endure too in support of me. So that sealed the deal and I am completely happy with my decision.

Shortly after the half marathon, I learned from another patient with NF2 from Washington state, about a natural history study of NF2 at the National Institutes of Health outside WA DC. There had begun recruiting candidates this year so I was very eager to become part of the study hoping that they would magically find some miraculous finding which would get me out of the surgery. The rest of May consisted of coodinating my records from various institutions to be sent to the NIH. While I enjoyed the summer hiking and diving, I anxiously awaited acceptence into the study.

In January my goal was 20-30 dives for the year. After the marathon I realized the goal just could not be achieved if they were all NW dives because we only have 1 day of the week to dive and it takes so long to get prepared and get me in and out of the water, that we only end up doing one dive that 1 day. Further, summer is not actually the best time to dive in the NW and the visibility was total SH-T in June! We suited up by could not see a foot in front of us due to the worst plankton bloom I have every seen! Therefore, 2 of our dives were a botch and we just practiced on the surface instead. So with 2 weeks unable to dive in the month of June, that left us only a maximum of 9 dive days if I was going to have an August surgery. After surgery I would pretty much be out of diving for the rest of the year so we decided to take a warm water anniversary trip to Cozumel.

We have always been cold water divers and have not gone on a warm water dive vacation since our honeymoon in 2000. Therefore, instead of waiting for another year to celebrate our 10 year anniversary by going on a dive vacation, we chose to "seize the moment" now. Afterall, there are no guarantees in life and no guarantees the outcome following brain surgery. It is out of our hands. So why wait and chance blowing a perfectly good opportunity? We held off taking dive trips while I went to grad school. I finished and then look what happened? Thus, my wonderful and fabulous husband (who I also refer to as my person "Make a Wish foundation"), took me on an absolute dream vacation! We did 30 dives in 10 days, I finally got to see a sea horse, and I even pet a sea turtle about 70-80 feet down! PLUS! I went wreck diving twice and night diving almost everynight which are activities I thought I would NEVER be able to do again!

As I sat by the pool reading "Every Second Counts" by Lance Armstrong while Harley attended his photo class in the early evening, I was blessed by the most sureal visual setting. I felt like I was in a dream and the thought crossed my mind that maybe it actually was a really good dream! The only thing that kept me in reality is the fact that I cut up my knee on the coral sand a few nights prior while trying to burst open the beach party pinata. The bandaid was still covering the wound. In dreams you don't cut yourself, right?

Back to the hiking.....for years I had wanted to hike with a program for women cancer survivors. However, the day of the week in the hike season landed on Wednesday which never worked out for me....I was either working or going to school. But this year I was doing neither. Further, I was no longer sick and my improvements in balance have been the best they have been in the last 5 years. In previous summers, I would not have been able to handle the difficult and steep terrain.

After having some struggle but nailing the first hike with them which had questionable terrain, I got excited and chose to stick it out. I even made the goal in June of trying to complete 20 hikes before my surgery - 1 hike a week with the cancer survivor group and 1-2 hikes on my own on trails with easier terrain that I know well and frequented by many other people.

It has been absolutely marvelous! I have been able to visit and hike on trails I did not even know existed nor could do alone. Also, I have built up the confidence and skill to tackle two pretty strenous hikes completely solo. I have made 7 solo ascents and 2 of them required srambles over large sharp boulders to see the view at the top! What a total thrill and high it has been!

Due to delaying my surgery until the fall because of my NIH visit in August and the need to abstain from taking the propolis supplement a month prior to surgery for healing reasons, I was able to reach my 20 hike goal with the cancer survivor group last Wednesday. Unfortunately last week I strained my buttock muscle on a run which has become increasingly worse by the end of the week. Therefore, I need to ease back and give it some healing time before I try to fit in as many more hikes as I can for the rest of the season.

After rescheduling 4 times, I think we now have a firm date of Wednesday Oct 21 for my surgery at OHSU in Portland. While resting my rump, I have need to get things squared away at the house, catch up on blogging and updates, and getted my things prepared and ready for my pre-op trip to Portland this month and the surgery next month AND celebrate my birthday too! :o)

Once we got back from the NIH trip in August, we went to the DUI demo day in Tacoma to get fitted for my new DUI drysuit that I have drooled over for 13 years. All my waiting paid off though because new this year they have the pink camo material avaialble! I LOVE pink! It is going to look sweet! I will be one of 3 so far with it in the US and each of us has a different design. It will take a month to make the suit so I hope it comes in time to get a couple dives on it before the surgery. ;-)

To get some idea of what it will look like, visit the following site: DUI hot new look


Thank you to my beautiful husband Harley for providing a life with such adventures and helping to make my dreams come true! I love you dearly and am deeply grateful for your patience, support, encouragement, love, care, and more than words can define! Without you, none of this would have been possible. I thank God everyday for allowing me to be lucky enough to recieve such a blessing!

To my friends and fellow hikers with Team Survivor NW, thank you for letting me be a part of your group and helping to fulfill a dream of mine that at one time I thought was dead forever! I know it must be pretty boring, scary, and frustrating hiking with me at times and I am sure several have past by wondering what a fool like me is doing out on trails like we have gone on. This summer has meant alot to me and the times we have spent together out on the trail. It groomed me for the mental toughness it will require for me to face this surgery. Thank you for giving your time, agreeing to spend longer on a hike for me to cover the terrain, and for allowing me to challenge myself. Not only have you provided me a productive place to channel my focus and energy but have allowed me to explore an outlet that some of us with NF2 like to refer to as time "to decompress". No matter how hard a hike is for me, the mountains are my sanctuary and where I am at peace. Thank you for bringing me there so I can re-energize my soul and face the challenges ahead!

Life Lessons

Photo of Rebecca Dufek with Mt. Rainier looming in the distance taken by cancer survivor friend Elaine Eigeman July 29, 2009. This is hike 16 of my 20 hike goal this summer.



Photo of Rebecca Dufek and cancer survivor friend Lori taken by fellow cancer survivor and TSNW friend Elaine Eigeman on our Snow Lake hike in the Cascade Mountains July 15th, 2009. I am the hiker in the purple shirt.






Photo of Rebecca Dufek taken by underwater photographer Harley Dufek in Cozumel, Mexico August 2009. It is one of 30 dives we enjoyed while on vacation.


A friend sent me this annonymous quote today with words and a philosophy so powerful that I just have to share it with you! Living in a state of constant unknowns and repeatedly facing my own mortality/threats to my quality of life, the advice could not be more fitting.

To get you up to speed very briefly, I am going in for another brain surgery next month. As you may recall, I was supposed to have a surgery last fall but I luckily escaped! The tumor was not showing significant growth but in March and last week it has. Two tunors have grown and merged together putting compression on my brainstem again. Thus, I am to a point where I need to take action before my quality of life permanently digresses.

Anyhow, I have known about this since March but I wanted my summer to play. It has been the summer of all summers and the one I have always dreamed of occupying my time between the mountains and the sea. I did not want to waste it and wanted to make the most of my time. Before my 2007 surgery I was totally distraught having emotional breakdowns here and there. Well I got tired of that and the anxiety I had before and after my 2004 radiosurgery when the tumor kept getting larger. All the worry was a complete waste of time of the precious moments I did have. It has taken awhile (many years) to realize that but I finally wised up. The negative energy is a total sap of my energy and is an obstacle to achieving what I want to do.

So today, these words are a good reminder to me of the path that I have chosen. I hope they capture your heart and soul too. Go out there and make the most of it!

Annonymous Quote

Life is too short to wake up with regrets...
So love the people who treat you right,
Forget about the ones who don't.
Believe everything happens for a reason...
If you get a second chance, grab it with both hands If it changes your life, let it!
Nobody said life would be easy
they just promised it would be worth it!!!


The happiest people don't necessarily
have the best of everything,
They just make the most of everything
that comes along their way....

Conquering the terrain!

Here are a few pics of the mountain pass trail I hiked on Wednesday with cancer survivor friends. Looking back at the photos I am really amazed that I accomplished this. It is definitely a remarkable gift from God that I prayed for and thanked the entire hike and there after. Let's hope there are many more hikes like this to come! What a dream!

Location - Snow Lake in Snoqualmie Pass

9 years and going strong! - July 16th

Our 9th wedding anniversary at my favorite restaurant the "Desert Fire" in Redmond, WA The roses and lilies bouquet he surprised me with when we met at the restaurant - LOVELY combination! I LOVE flowers and was flattered!


Photo of us at the 4th of July fireworks in Kirkland,WA

Little behind as I am making the most of it! ;o)

picture of me at Bridal Veil Falls on a TSNW weekly hike to Lake Serene in the Cascade Mountains - This was my most challenging hike and a trail rated most difficult. It was lots of rocks, roots, and zillions of tiny narrow stairs. For me, it is very mentally exhausting trying to focus and keep my eyes straight with every 90 degree turn on the stairs and to keep from falling over on the narrow trail. I made it to the falls and part way up. It was taking me too long and I knew it would be even longer to make my way down. So my friend Jane and I stopped part way up the mountain to wait for the others to continue on to the lake and return. I was kind of bummed as the the scenery at the lake with snow still clinging to the surrounding peaks is incredibly amazing. Here is a link I found with pics of the lake:
Flicker photos



pic of me at Annette Lake out near Snoqualmie Pass in the Cascades - This is a long and high altitude hike I have dreamed of doing for years! With all the work I have been doing to improve my balance, it is a hike that I can finally handle - always with hiking poles. I was absolutely stoked and the scenery of the peaks at the rock slide crossings is absolutely breathtaking! This is probably one of my favorite hikes now.



Photos of Wallace Falls June 3rd - 1st TSNW hike

Most difficult hike at Lake Serene - June 10th

pic of me with other TSNW cancer survivors on one of our easier hikes on Tiger Mountain called "Dwight's Way". No. we did not meet Dwight! LOL ;-) I am the second one from the right in a blue shirt. Yeah, I very rarely wear makeup when I hike. Feels good to just go natural and let the fresh air penentrate my naked skin.

June has been a very busy month and July has proved to be the same. For now I cannot access my photos so you will just have to wait.

Since the start of June I have been really taking advantage of the summer, the improvements I have made in balance, and fulfilling dreams of activities I have wanted to pursue again.

I am definitely on the par of "disabled" when it comes to hiking and diving, but not matter how difficult and challenging, my passions still drive me and I am not ready to let the tumors keep them from me forever.

Back in the early 2000s when I first learned of the women cancer survivor organization Team Survivor North West - TSNW, I have dreamed of participating in their hiking group. However, work and then later graduate school preventing me from having the luxury of time to partake in it. Often it would pain me on nice days when the mountains were clear and I was stuck in a classroom or out on the job.

After graduate school, I had planned to start training to become a climber and backpacker. As fate would have it, when I finally had the time, the tumors had something else in store for me. The exact day of my final graduate presentation to peers and faculty, actually shortly before leaving to give the presentation, I got the news that I had a massive growth of ond of the tumors on my auditory nerve which also affects balance.

Now I did have a couple months before my treatment (May and June as we traveled out of the country in April and then down to Oregon to see family) to "live it up" so to speak, but needless to say our minds were very preoccupied with what was to come next and what treatment to choose. We even went as far as to have THAT conversation which are my last wishes - to be cremated and incorporated into an artificial reef.

So I can't say I was having a really fantastic time getting in as much hiking and diving as possible. LOL As a matter of fact, in preparation for my most likely total deafness, the free time we had together was spent taking a sign language class together so we would be able to communicate.

So anyway, found out I still qualified for radiosurger - Phew!, so I thought. I was geared up to hike and dive again after the treatment was out of the way thinking I was getting off easy and maybe would be sick for a month. WRONG!

I remember I did manage to get in about 4 hikes on a trail which was once one of the easiest for me before I lost the balance - of all the hikes I have done this season, that same trail is now one of the most challenging. For 2 or 3 of the hikes back in late 2004, I continued to vomit up the mountain as the radiosurgery left me dizzy and nauseated. Finally, by March 2005 my balance hit the bottom of the barrel and it was doable no more. My vision was spinning all over the place and I could barely maintain orientation. I did not quite yet understand the experience and therefore had not become adjusted to it yet.

More than 4 years have passed and I have worked my hiney off determined to get as much of myself back that was so suddenly robbed from me. If you want something bad enough, youi will find a way to pursue it, attain it, or achieve it. Hiking and diving are a big part of my soul and my "living years". I just had to scratch, claw, bleed, sweat, etc. to take it back.

So this is what has kept me from rattling on as usual. When I am not taking care of normal responsibilities, I am busy training to be able to maintain my health and live the physical quality of life I desire. When opportunity arises, you better believe I grab the chance.

My attitude this time is definitely quite changed. Both the time leading up to my treatment in 2004 and the summer prior to my brain surgery in 2007 were ENTIRELY agonizing! It was just awful and stressful as well as mentally and physically exhausting. I wasted so much time fretting and worrying when I could have been out enjoying life as we never know how long it is going to last!

So this year I said "enough!". I was not going to give up my summer nor let the situation rob me again! There is absolutely no production in it what so ever and it devours the precious time I have. The extent of my control is to keep healthy, strong, and prepared. After that, it is totally out of my hands. So I have decided to make the most of what I have.

To date since June, I have completed 12 altitude hikes, 3 dives out of 5 (visibility was zero on 2 dives), and then a practice dive in the neighbor pool today to try out gear for upcoming dive trip to warm water. When not occupying myself with these activities, I have been keeping up with running once or twice a week, walking the dogs, water aerobics once a week, weight training 2-3 days a week (always making sure to get the full workouts in), and finally a little snorkel practice in the pool by doing laps.

Ok, gotta go! Harley's night off and we have plans - Thai and a movie. Have a wonderful week and don't stress out so much! Make the most of whatever your situation is and take time to notice and enjoy the little things! I know I do! ;-)

ACCEPTED!

NIH website

It is set! Over a week ago I was contacted by the NIH NF2 study research nurse I had been cooresponding with via email. She invited me to become a participant in the study and this weekend I received my packet of information and consent form delivered by FEDEX. A schedule of appointments and tests have been finalized and we will be flying out to Bethesda, Maryland on August 16th.

All I need to do now is sign my consent form to send back, confirm the flight arrangments, and get together all the records I have had since 1999 which were not sent out already - only my most recent MRI images since 2004 were reviewed. (that is quite a job as I have been seen by many specialists at several facilities. Hence, my records are housed all over the place and it is quite a bit of work to get it all organized and together.)

So what does it mean that I am in this study?

There is not a direct benefit to being part of the study and nothing magical will be going on with the hope of shriveling the tumors. This is simply my contribution to medical science in regards to understanding the nature of the disorder NF2 - how fast do tumors grow and what factors may trigger growth?

However, the benefit to me as a patient of NF2 is that there are researchers and a team within the country focused on this one disorder. I am an interesting case with many issues/side effects caused by the tumors of which are permanant. I will have medical doctors trying to determine the cause of these issues and a way to prevent them for future generations. Also, I will have a full battery of tests to understand my system as a whole done in one facility instead of all over the place. Further, it has been several years since I had some of the tests performed so it will be nice to know what my status is and to understand the progress I have made.

I will keep you posted on how the study goes.

P.S. - I have been taking the Bio Propolis 30 supplement from New Zealand for 4 months as of June 20th. By the time I have my next MRI during my visit to the NIH, it will be almost 6 months since my last MRI which revealed growth. While the Propolis is not expected to shrink tumors (at least in such a short period of time), it IS known to show tumor stability. So that is the results I am hoping to see when I go to the NIH - NO NEW GROWTH.

From there, we will see what direction I will be moving in. In my doctor visits in March and April, I was told I need another brain surgery as on the MRI we could see that a tumor near the brainstem grew significantly and merged with another one already causing significant brainstem compression.

Really it is quite amazing I am the same person as is reflected by the MRI images. The pictures of my brain look pretty scary. Instead of dwelling on that, as it can really emotionally get to you, I like to pride myself on being a medical marvel!

So let's see what news the NIH visit brings.

Summer fun/work - I've been busy!

Here in the NW my summer started in May and I dug my heels deep down into it after a couple weeks of post marathon recovery. I have been keeping up with a weekly hike in the mountains (missed yesterday because we had an appointment to try on another drysuit down south. I am hoping to get in a hike tomorrow or Saturday at one of the local trails doable for me to hike solo.)

Since the start of June, Harley and I have been dedicating his Mondays off to go diving here in the NW. Of our 3 attempts, unfortunately we only got in one actual underwater dive as the visibility has been the worst I have ever seen (1-3 feet). We still suited up however and practiced donning our gear, entering and exiting the water, and snorkeling on the surface (which is quite a bit of work for me AND Harley who must suit up by himself as he helps me down to the water with my gear first).

I am still having a bit of a problem with my old drysuit which was made to specifications for when I was about 30 pounds heavier. As a result, my suit is HUGE and out of the water we actually need to press the air out of it. In the water, I am having continual bouyancy problems. We have been keeping an eye out for a good used suit for me but everyone either my feet do not fit and are too large, the suit is a hair too small or it is just too big. It has been frustrating to not dive in a properly fitting suit. Why don't I just got out and buy a brand new one? hehe Well it is VERY costly (over a couple grand investment for what I need). So the hunt continues!

With the nice weather comes LOTS of growth! I have been doing lots of weeding on our rural woodland property. I cannot keep up!

For nearly the past 5 years I have been unable to mow the lawn and do certain tasks in the yard. My balance is nowhere near back to normal but it is markedly improved since my utter downfall in 2005 where I lost it all. Further, the strength I have gained from weight training over the past 2 years has helped IMMENSELY allowing me to lug around heavy objects and push a wheelbarrel full of brush down the hill and back up as well as push the lawn mower in our very uneven yard. To date, I have mowed the lawn twice this summer and is the first I have done in 5 years! Trust me, our lawn is extremely challenging even for those with normal balance ability.

At the same time as all of these things, there have been repairs to problem solve, inside chores to be done, dogs to be walked (and nursed as Jake had another surgery to remove a LARGE tumor which became punctured), fitness to keep up (with hiking and diving once a week, I also do water aerobics once a week, running once or twice a week, strength training 3 days a week, and I recently started swimming laps in the pool with the new dive fins I got for christmas), researching medical options, and coordinating my medical records to be sent to the NIH.

I still have tons of cleaning to do inside this evening. I am going to skip out on the gym tonight and walk the dogs at the very least. I would really like to get in a short 30-45 minute run this evening if possible too which I think I need to do by myself because it is a little too warm for the dogs today. Katie has been having a very difficult time exercising in the heat.

Happy Thursday!

Endless Obstacles - OVERCOME!

Last month I was featured in an article about NF2 on the front page of our local news paper the Redmond Reporter. To read the fantastic article writen by Tim Wantabee please click on the words "Redmond Reporter" below.

Redmond Reporter

The Rest of the Story - Eugene Half Marathon

I stepped off the bus about 7 or 7:02 am with the other participants frantically sprawling to the start line. We must have been dropped off about a half block to block away but I really do not recall details. I was in my own rush to get there and try to figure out where to go.

When I approached a huge mass of people gathered far behind the actual start line, I saw a man holding up a white sign with the words "10 minute or more pace starting gate" and an arrow indicating somewhere to the left. Never having run a marathon before and seeing an arrow pointing to the left of all the people, I assumed there was some kind of special entry off in yonderland where the arrow was pointing (remember that I am deaf and need to rely on visual cues).

My pace is actually faster than 10 minutes a mile but not that much faster. I did not want to start out in the mass of very fast runners doing 6 and 7 minute miles and therefore get trampled. My reasoning was that if I started at the front of the slower pack, I would stay at the front and have lots of space to myself. hehe So I quickly decided the 10 minute a mile and slower gate I go!

It was sort of strange though. All the runners (hundreds and really thousands) were inside a baracaded fence seperating me from the other participants. I was glad not to be mashed in the sardine can chute of runners. Yet at the same time, I questioned if I was going the right way. I DID follow the arrow! LOL I also saw a couple of other lost people (or so I thought) running the same way. I did not notice if they were wearing a bib number and were actual marathon participants or spectators rushing to catch a glimpse of someone they knew. At the time, I just continued on with the few other stragglers running in the direction of the starting line.

As I ran along the outside of the baracade protecting me from the massive herd of other participants, I could not find any "gate" or opening to let me in. I thought "Oh crap! I am on the wrong side." and I began to fantically search for an opening. As it turns out, there never was a "gate", chute, or whatever. I must have misinterpreted the sign and really it must have been indicating the people gathered together at the BACK of the large mass!
Not wanting to miss the race or have to turn back around, I just kept moving towards the start while looking for an opening.

Finally there was a break in the baracade about 4 strides in front of the starting line. So in desperation, I did a crazy thing which either pissed people off or left them stunned and puzzled over what kind of loon I was! LOL I broke through the opening and ran the opposite way towards the start into the crowd! I was in the far left hand side so it was not too disrupting. I yelled "Sorry! They told me to go the wrong way!"

When I passed the pad on the ground which started the timing chip, I immediately turned back around and began my race! I wondered if it was going to throw off my time as I passed the start twice which activates the timing chip. I do not have a good record with timing chips working perfectly (missing the timing chip in the Furry 5 K last year and a very inaccurate time in the Big Climb this March because I did not know I was supposed to pass a certain point in the upstairs lobby and turn the chip in when I finished. I went back to wait for Harley so I could get a picture.)

After all the confusion, I was off and could relax. I remembered to look at my watch about a couple blocks ahead of the start line. I think I recall it being 7:04 or 7:05 am. Seeing that I had sort of "cut in line" at a major marathon of thousands, I was not squished in the pack and had some room. However, this first leg of the course was on the streets heading out of downtown Eugene which were not perfectly level and had cracks popping up here and there. I had to be VERY careful to avoid them while spacing myself appropriately from people so that our arms or legs did not become entangled causing me to trip.

For some, the weather probably really sucked but it was "just right" for me. I do not do well in the heat so a nice cool drizzly day not only provided me refreshment but also kept my body at a very comfortable temperature for running. Further, the glare of the sun worsens my double vision and a dry day aggravates my "dry eye" at times causing a stinging or burning irritation. So I was really pleased with the weather and wore the appropriate layers to keep me comfortable (not too hot and not too cold). I bought a cheap pair of $2 gloves at the expo the day before which I would not be heartbroken or "bank broken" by tossing away during the event.

Running in the pack even though I kept a pretty nice cushion of space around me, did really take some getting used to. I could not keep at the constant pace I had practiced. People were continually slowing down, speeding up, weaving in and out, and then there were those darn pot holes, cracks, and large puddles to avoid too. I ended up zigzagging around to dodge all of the obstacles and so that I would not run into someone or step on their shoe (don't you just hate it when someone steps on the back of your shoe and your heel slips out?). Even so, with all of this slowing down and speeding up, I strived to keep the invisible "bubble" protecting myself. My concern was falling which I could not emulate in practice. If someone were to elbow me, I could possibly lose balance, trip, and fall over. But the other runners in the marathon seemed quite considerate. I did not get trampled by anyone and everyone waited for openings to safely pass (unlike when I walked the full Seattle marathon in 2006).

Within a mile, I chose to use the first honey bucket on the course which I think was actually someone's private latrine. You know how someone is doing a landscaping or remodeling project and the contractor puts a honey bucket on site for the workers? Well anyhow, the day prior, my dad drove me through the entire course so I would know where to go on event day. This was the first bathroom we came across on the course and I thought it was a good choice to use because I would not have to wait in line at the designated marathon bathrooms. Also, I did not want to worry about having to go while I was running along with no bathroom nearby. I wanted to go the first chance I got so I would not have that worry (In practice, I had to go within the first 15-30 minutes. Many readers may find that an uninteresting thing to write about but I know that it is most likely a question in the mind of some of you doing your first marathon. I know it was for me! I was so nervous about that when I walked the full marathon and wondered if there would be ample enough restrooms along the way.)

By mile 4 1/2 Imy hands were absolutely sweating and roasting! I could not stand to wear the glovew any longer! Yet I could not bring myself to just throw them down on the course. I opted to carry them until I saw my family at the 6-6 1/2 mile mark. However, carrying them became quite tiresome. After mile 5 I spotted a lady volunteer on the side of the course. I ran over to her, handed her the gloves, said "Here is a souvenier for you" and continued on my way.

In practice I only carried a water bottle if I was running 8 miles or more. When I ran longer runs, I would try to wait until mile 8 to take my first drink. Since there were lots of water stops on the course, I did not carry any water with me at all and I GREATLY depended upon the water stations available. I think I stopped at every single one except for 1. In total, I think I made about 6-7 hydration stops. I had to stop because I am unable to swallow if I am moving. So each was probably about 20-30 seconds to gulp down a wax paper dixie cup of refreshment. Only 1 stop did I drink gatorade provided. I fixed a sport bottle of FRS energy drink that my sister gave me after mile 6. I probably drank 1/3 to a 1/2 of it.

In all, the course was pretty fantastic and I was able to maintain a good cushion bubble around myself until we reached a bike path 5-6 feet wide at miles 7 and 8. On the trail it was a bit cramped and more like pickles in a jar rather than sardines. In many places the grass was too long or the terrain off the trail to lumpy and uncertain for me to pass. Thus during that stretch, in a few places I had to wait it out before I could pass. But that was alright because it gave me a good opportunity to rest. During practice, miles 7 and 8 were challenging and the run became a battle of "mental wit" to keep going.

There was only one section of the course we were unable to explore by driving through and that was between miles 10 and 12. I studied the map carefully as this was the most critical section to be familiar with for that was the point where the full marathon runners split off on a longer route while the half marathoners followed a different path. I was a little anxious about going the right way.

Just after the split, I reached mile 11 and was pretty relieved. Yet I came upon another mileage marker that said 15. For some reason, during this section I was surrounded by fewer runners. I was running for what seemed like a while and did not see any other signs. I began to worry that I took the wrong path and was running the full marathon route! Mile 12 seemed like it was taking FOREVER to reach. There were not any spectators on this stretch either so I grew even more concerned. I began to ponder what in the heck I would do if I took the full marathon route. Would I just run the half marathon distance and then walk the rest? No, there was not time for that. My sister and I had to drive back to Seattle that day. Would I just run as far as I possibly could then? "Cripes! I am exhausted and don't think I could run a full marathon today!" I thought. So then I contemplated if I reached mile 14 if I would turn around and track back to get on the right course. But then I would run past a half marathon and my time would be screwed up. At about the time I was heavily weighing my options, I finally reached the 12 mile marker. "Phew! Thank God!"

Now I was in the home stretch! After the 12 mile marker we entered the Eugene streets again. It seemed like we were back on the same stretch we began on. However, there were people on the other side of the road divider running in the opposite direction! I had been running almost 2 hours so surely they could not just be starting! Confused, I was leery to "open it up" as I was uncertain if I was going to have to turn a corner and run back the same direction to the finish. I wanted to conserve my energy.

A few people stopped running and started walking. I thought "Geez! You ran this far. Why stop now at the easiest part? You are almost there!" While thinking to myself and hearing Harley's voice of telling me this is the easy part (in my mind), I spotted my sister on the side of the road. She ran along taking photos of me which pschyed me up. I saw the corner ahead with the finish line in the distance. With visual confirmation of the distance I had left to the finish, I mustered all the energy left in my reserves to come in strong!

What satisfaction to have set a major goal which you were not even sure at first was possible and to have recognition of of accomplishing it by having a volunteer drape a finisher's medal around your neck! It was absolutely perfect! Just after I crossed the finish line, the sun peered out and it became a beautiful day! What a reward! In recovery, there were space blankets to warm our wet and rapidly cooling bodies and a plethora of food from various sponsors (pancakes by Krustea, Subway subs, small packs of doritoes and cheetos, nestle chocolate milk, water bottles, etc.). Outside the recovery gates were lots of treats to replenish electrolytes - cliff energy bars, Shot blocks and various sport drinks).

Thank you to my parents and sister for helping to cheer me on, offering support, and for making the event very special for me, to my husband Harley for providing the means for me to be an endurance athlete, enduring the time and financial sacrafice while I train, the freedom to help others, and for being my biggest fan, to my sister Michelle and DJ for driving me down to the event, to all my sponsors who helped me to raise over $5500 for NF2 research (as well as the sponsors from my hike last fall who helped me to raise an addition $5200 for NF2 research), Tim Wantabee at the Redmond Reporter for writing an excellent article about NF2 and my event which was featured on the front page of the May 1st issue of the Redmond Reporter, to fellow endurance athletes and friends who shared training stories and tips, and to all the friends and family who encouraged me during training. Without all that you have given and shared, I could not have accomplished my most challenging feat yet! Thanks for helping me to keep hope, to believe in myself, and helping me to attain the means to inspire and offer hope to countless others! I am very blessed and very grateful for your support!

Scammer Targeting the Deaf

About a month ago when I returned from the Eugene half marathon, I received a series of instant messages on yahoo instant messenger wishing me congratulations. Initially, I thought it was someone who heard of my unique accomplishment through a person I know (I am disabled in that I lack balance function resulting in a very poor gait and get double vision when exerting myself, so running a half marathon is quite a challenge. Further, it was a unique endeavor as I am a deaf athlete and out of 6000 runners, there was either a small percentage of us or perhaps I was the only one!)

So given my deductive reasoning, I just thought it a sincere and harmless congratulatory sentiment related to my weekend. Therefore, I made the mistake of adding that person to my buddy list online. I then began receiving many messages from that person and they finally caught me while I was online and responded.

It turns out that it was a scam congratulating me for winning thousands of dollars if I would only give out my personal information to meet their "laid down requirements". What the heck is a "laid down requirement" anyway?

Recently, a reader reported the same intrusion happening to her. It is the EXACT same format and very often the SAME wording! Of course she was a little less pushy and the conversation was more civil, whereas mine resulted in threats by the scammer that I was going to go to jail for not believing him/her. LOL

So the scammer is still out there. Please be warned and please be careful! DO NOT give out your email or personal information! That makes you vulnerable and susceptible to identity fraud which is actually a HUGE problem. Keep your info safe! eh?

To read both my experience and Heather's recent scammer attack, click on the words "Scammer Warning Post" to be taken to the original post. Heather has copied and pasted her IM dialogue with the scammer in the "Comments" section at the bottom of the post.

Scammer Warning Post

Birthday Boy

Here is my dad, the birthday honoree we threw a party for last Monday (his birthday is the 26th but they had to be back in Oregon on Tuesday. So they came up to visit for the weekend and we celebrated before they drove home).

His ice cream cake is in a tupperware container because he started eating it the night before and we also needed a way to fit it into our freezer so it would not melt on such a hot day.

Obviously, I was taking a vacation day off of South Beach and thoroughly enjoyed scarfing down a HUGE piece of ice cream cake. Harley was very good though and upheld his committment to the program while the rest of us sugared out! ;-)

Happy Belated Memorial Day!

!

It seems with the holiday, our internet down, and some serious computer problems, I have fallen behind a week on the blog and missed my weekly post.

The entire week before memorial day, I spent hours upon hours pressure washing off our deck, cleaning it up, potting plants, and getting it ready for the birthday party we held for my dad last Monday. It was lots of work but totally worth it and now the deck is a pleasant outdoor extension of our home which is the perfect ambiance for us to relax and enjoy the summer before my upcoming surgery (I have not committed to a date yet but thinking the 24th or 31st of August. It just seems too soon from now though!).

I have been on 4 runs since the marathon (a 3, a 4, a 5, and another 3 mile Saturday night). I have been pretty much keeping to a weekly run, a weekly hike (4 elevation gain hikes since the marathon), a weekly water aerobics class, and my weight training 3 days a week with increased weight now - I had decreased the amount I lifted during the half marathon training).

I have to admit, I have been a little tempted to do one more half marathon at the end of the month with another NF organization but upon realizing the shortness of time, I just have to committ to completing the yard work (over an acre with TONS of weeding and trimming needing to be done), indoor organizing (massive piles of paperwork), and then I want to get in some hiking this summer and a little diving. Training for another half marathon would severely compromise all of that and interupt my responsibilities which with the rapidly approaching surgery, is taking on too much.

So my training now is focused on increasing my muscle mass in preparation for surgery and making my legs stronger so I can hike and dive. Of course, part of all this is finding ways to increase and maximize my energy levels too.

I am also engaging in the South Beach program with Harley in the attempt to wean myself off of sugar which I am having a difficult time doing. Yesterday I made a pan of brownies for a friend and Harley caught me sitting on the deck in the sun licking the chocolate off the beaters as if it was a new delight I had never experienced before.

In between all of this training and working, I have taken some time to fully savor the spring by visiting gardens and photographing the lovely rhodendrons in bloom which are nearly finished now. The photo of us above is in our yard underneath our delicate and lovely white cherry tree and some red rhododendrons in the background.

May was a great month but a very fast one! Happy June!

NF2 "Hope" Shot - Propolis Bio 30 cocktail

As a few of you know and I had briefly mentioned a couple months ago in one of my winter posts, I had pursued trying a supplement in an effort to stablize the tumors. In studies conducted in Germany and Japan, the propolis, harvested by honey bees, has suppressed tumor growth in mice grafted with NF2 tumors. There have been under a 100 people with NF2 worldwide taking it for a year with no adverse and serious side effects. Therefore, I figured what do I have to lose but my investment in trying in out? It is a health supplement anyway which would be beneficial to me whether it stopped the tumors or not. So why not give it a shot, eh?

The liquid supplement is known as Propolis Bio 30 manufactured by Manuka Health of New Zealand. Now there are other forms of propolis available in different parts of the world. However, the propolis from New Zealand is the most pure as the plants the bees harvest it from have the highest concentration of caffeic acid (the effective ingredient that contributes to tumor suppression). Further, it is this particular propolis that Dr. Hiroshi Maruta used in his research that suppressed tumor growth in mice.

Thus, in February I ordered a 3 month supply from Manuka Health in New Zealand to try out. On February 20th I took my first dose which is 6ml a day. By now I have finished an entire case and a half (18 bottles) and it will be time to order some more as I have developed a very appeasible method for taking it and it does not appear I have any allergy to it.

The propolis comes in little dropper bottles shown in the picture above. It is pretty sticky and does not taste fantastic so one really would not want to ingest it alone or use a nice glass (for my first dosage, I used a nice tea cup and the residue became stuck to the inside of the cup. I had to scrub hard with a scouring pad to remove it.)

On my first 2 tries it was awful but tolerable (I tried it in tea). So then I got a wild idea to put it in cocoa. BAD IDEA! I thought I was going to puke and had to force myself to drink it down as quickly as possible. Ok. So hot drinks did not work so well. I decided to try it with a very tart pomegranate supplement I had been taking which is full of antioxidants and aides the circulatory system which I sometimes have a problem with (I have Raynard's where I lose blood circulation in my hands at times.)

Wow! What a complete difference! It worked great and was yummy and was something I was taking anyway! Now I had an incentive to use the supplement more religiously instead of occassionally.

I read some great stuff on the ingredient Reservatol made from grape seed used in red wine and found in small quantities. I had tried out a capsule form of reservatol and found unexpectedly that it increased my endurance which was important for me when training for the half marathon. However, the capsule form was too expensive but guess what? A new liquid supplement which included reservatol, the pomegranate, and 14 other highly beneficial ingredients came out on the market! Therefore, I switched liquid supplements to give it a try. It is not as tart or as sweet as the Naturally Pomegranate made by Argo Labs but I have adjusted to the taste and really enjoy it!

Above is a picture of the bottle "Miracles Fruits of the World" by Drinkables. Both the Naturally Pomegranate and Miracle Fruits can be purchased at Costco Wholesale or direct online through the manufacturers.

Here is the recipe for the NF2 "hope" shot propolis bio 30 cocktail

needed-

small paper dixie cup

half of your Propolis dosage for the day (mine is 3 ml = 3 droppers)

a half ounce of the liquid supplement Miracle Fruits of the World or Naturally Pomegranate (the serving for each per day is 1 ounce)

Method-
-pour your half ounce of the liquid supplement juice into thedixie cup (I just cover the bottom of the cup, you do not need a lot)
-measure your propolis dose or just squirt the propolis directly in the center of the liquid trying not to get any on the sides of the cup

Voila! You have your NF2 "hope" shot! Drink the shot and then add some water to the cup to swash around and collect the remaining juice and propolis residue. Drink down (another shot!) and continue to do so until there is barely any residue remaining. I add water between 3-5 times.

Enjoy and Good Luck! :o)

P.S. - last week I stocked up on 2 more bottles of Miracle Fruits as Costco had a $6 instant rebate off per bottle.

Morning of the Run

This is what I look like at 4:30 am the morning of a half marathon. Of all the days during the 4 months of training, this is the ONLY day I was able to wake up at this time and actually start running at 7 am! (I am not a morning person) ;-)

Fortunately however, my father is! Therefore, I could count on him to be my alarm clock and get me up at on time. Thank God because I think it would be a struggle if I had to do it on my own!

So what does the morning of a marathon look like?

I groggily drag myself to the kitchen and down my supplements for the day:

half ounce of "Miracle Fruits of the World" with 3 ml of Propolis BIO 30 - AKA: My NF2 "hope" shot, meaning I and the rest of us with NF2 taking it hope it stops our tumor from growing.

Then I prepare myself my FRS energy drink (2 ounces orange flavored liquid concentrate in about 8 to 12 ounces of water) - Lance Armstrong's strategy for beating fatigue.

2 Rez-V reservatol capsules to increase my endurance ability (asw seen on Barbara Walters)

my breakfast of champions (LOL) which is a peanut butter banana toasted english muffin and some form of protein which happened to be a salmon patty on this particular morning.

Then I take 2 FRS sport chews and finish my drink.

Now that I am somewhat awake the ritual of personal hygiene and getting dressed comes into play (I showered the night before so I did not have to take time showering in the morning).

Mom, dad, and sis are all ready and I am ready so we head out the door for me to catch the last shuttle bus down to the start line which is at 6:40 am. (my parents live 20 minutes outside of Eugene so I stayed at their place).

On the drive over I was tossed on whether I should wear my rain jacket in the event or not as there was light rain on the way. Most of my training was in cooler weather and an entire state north. It had only started warming up in the last couple weeks before the marathon. The forecast however, was for a low of 44 degrees with light rain and the low is pretty much that early in the morning. When we left the house, the temp was about 50 degrees. I was not sure how much it would warm up as daylight approached and the morning progressed.

We were surprised to find a long line at the shuttle bus stop when we arrived and we were all concerned I would even be able to get on the last shuttle bus let alone arrive the event in time. There was only a tiny hotel shuttle bus present that had a capacity of maybe 20 but there were well over 50 participants waiting! Worse yet, there were only 20 minutes before the race started! Therefore, my sis and parents decided to wait with me to make sure I got on a bus to get to the marathon. In the event that I should not, they planned to drive me down as close to the start as possible and drop me off.

While waiting, the rain started to lighten up to a drizzle. Several people were just wearing shorts and a long sleeve technical shirt. I wondered if I would get too hot with the jacket and did not feel like wearing it tyed around my waist for nearly the entire run. Therefore, I decided to ditch it (dressed in a running skort, long sleeve technical shirt, and my running singlet over the top) and hand it to my sister when I hopefully got on a bus.

With luck, 2 or 3 large metro buses arrived about 12 minutes before the event. And yes, I did get on. A marathon walker sat next to me and looked a little anxious. I asked her if it was her first marathon to which she shook her head yes. Then we proceeded to have a pleasant conversation by my asking simple questions that I could predict the answers to somewhat understanding her response via lip reading (I am completely deaf so in spontaneous situations such as this without paper and with a workable person, I have strategies to which I can get by - ONLY if there is no other resort!).

Seeing I had walked the full Seattle marathon in 2006, I did much of the talking and mostly asked yes or no questions or ones which had very short answers. She came from an amazing family! Her husband and young son (maybe 9 or 10) was walking the marathon with her. Wow! How cool and admirable is that? - the whole family supporting each other! I was astonished that such a young boy was going to do it too and that he looked so excited!

Two minutes to the marathon and we were rounding the corners of the streets in downtown Eugene. "Will we make it in time we wondered? Gee, it was a good thing I went to the bathroom at the hotel BEFORE I got on the bus as there would be no time now for a pit stop."

Stay tuned for the rest of the story! :-)

National Institute of Health (NIH) Study

Check it out!

I just called over the phone today to the NIH to register for a natural history study of NF2. They are currently seeking participants for the study. Go to this link for the details:

NIH Natural History Study of NF2

Scam warning to all deaf and disabled!

So when I returned home from Eugene, I had a number of IM messages and some emails congratulating me. People that I did not know were aware, already knew how I did. I knew everybody except a couple of the messengers. One was the director of our nonprofit congratulating me on my fundraising efforts and my achievement in the half marathon run. Another message was from an instant messenger with the screen name "Deaf Claim Center". The person had said messages saying "hello", "congratulations", and had asked to be added to my messenger list.

I had assumed it was another person with NF2, another deaf person, or a representative from a deaf organization (in the previous week I was contacted via email by an organization in search of deaf high school athletes that I may know of). Therefore, in my tired state, I clicked "add" without thinking too deeply about who the person actually was. Over the next couple days, I recieved several IM messeges from "Deaf Claim Center" saying hello to see if I was online. I think it was last night that the person left a message stating that I won a prize through the Deaf Charity Organization that they were representing.

This morning I recieved 3 IM messages from this person and one inquired why I have not gotten back to him/her and that they only had 2 more days left for me to claim my prize. Pretty certain it was a scam but curious to find out what this was all about, I finally responded on day 4 which is today. I wanted to see if the person would actually try to prove they are legit and what he/she would do if I cornered them. The following is our IM conversation:

Deaf Claim Center: Why is it taking you too long time to redeem your winning prize..I am only using today and tomorrow to attend to winners of your date winning..

Rebecca Dufek: what is this about?

Deaf Claim Center: Its was actually a deaf charity organisation lottery..
Deaf Claim Center: Which you happened to be one of our lucky winners..

Rebecca Dufek: but I did not register for anything nor am familiar with your organization

Deaf Claim Center: The Entire Team of Deaf Charity organisation, Congratulate you on your Win of a Cash prize of $150,000.00 (One Hundred and Fifty Thousand Dollars) Only in today's Draw.
(Here is another hole I catch as I reread this. As I mention above, this person has been contacting me since Sunday. Yet, I won in the drawing which was held TODAY. Hmmn? So why was I contacted everyday for the previous 4 days?)
We are also Pleased to inform you that you have been verified.

Rebecca Dufek: what is the website of your organization?

Deaf Claim Center: We got millions of Email address from the the deafvp and deafconnect and our electronic System Randomly Picks 10 Lucky People to win $150,000.00 Cash prize each all in the effort of empowering the deafs and the disabled in general.

Rebecca Dufek: do you have some kind of legal documentation to back that up?

Deaf Claim Center: I have here a copy of your winning check,which i can send to your email..
Deaf Claim Center: You only need to claim your winning prize..

Rebecca Dufek: I prefer it sent via the US postal service
Rebecca Dufek: and how do I claim it?

Deaf Claim Center: We only use UPS to deliver the check to our winners..

Rebecca Dufek: ok that will do

Deaf Claim Center: We are Charity Organisations, Lending a Helping Hand to the Deaf, as we know that Disability is not Inability.

Deaf Claim Center: We are affiliated to Organisations Like NAD (National Association of the Deaf), UNAD ( United Nations Aid for Disabled)

Rebecca Dufek: so what is your web address?

Deaf Claim Center: Subsequent to the United Nations Disabled Day Held in texas in April 2009, we came up with a lottery tohelp the deaf through out the States.but u need to believe this cos it is real.

Rebecca Dufek: that is interesting because I have learned that the Deaf community do not view hearing loss as a disability

Deaf Claim Center: We are actually aware of scam going on on tthe internet about some pple trying to scam the deaf but i m happy to inform u that 7 of them have been arrested and now they are in jail so u have to be happy now
they are wicked people who dont have the fear of GOD in there heart they are indians living in america ours is serious busiiness and real and legal ....we are doing this all in the efforts of making the deafies happy and rich.

Rebecca Dufek: so how are you able to give money away during times of economic turmoil in our country?
Rebecca Dufek: why is there no information on your profile?

Deaf Claim Center: As matther of fact, the UNITED STATES GOVERNMENT is aware of this and also the department of IRS and we are compelled to give out the cash winnings to sucessful and lucky winners after they have met up with the laid down requirments and have been cleared

Rebecca Dufek: how can you prove to me that you are legit?

Deaf Claim Center: I am just your claim officer
Deaf Claim Center: Our System Randomly Picked your Email Address and a Unique Winning Number assigned to you.
Your Unique Winning Number is DL383/3992 pls write it down some where safe its very important plssssss

Rebecca Dufek: what are the "laid down requirements"?

Deaf Claim Center: I am your Claim Officer and i require More Information about you,In Order for me to process your Claim.
Provide me with the Following Information.
Winning unique No.: Full Name: Address: Sex: Marital Status : Job: age

Rebecca Dufek: so how are you going to prove to me that you are legit and not a scam artist?

Deaf Claim Center: Thats why you have a copy of your check,which i can email to you for you to see..

Rebecca Dufek: Again, where does the money come from and how many awards are you granting?

Deaf Claim Center: Alot but your concern is getting your own winner prize which only you demand me questions for...
Deaf Claim Center: Provide the above informations,so your profile can be updated on our computer now..

Rebecca Dufek: You have not answered my simple question and you are asking for very personal information
Rebecca Dufek: I would be happy to give that to you if you are able to prove you are legit
Rebecca Dufek: so far you have not done that and can be any scam artist quite easily

Deaf Claim Center: Okay how will i do that,you should contact our head office in California for more informations..

Rebecca Dufek: ok
(long pause and no response from the person)
Rebecca Dufek: hello?

Deaf Claim Center: I am here..

Rebecca Dufek: I am waiting for you to provide the information to your headquarters and your website

Deaf Claim Center: Hold on..I am on phone..
Deaf Claim Center: I am back..
Deaf Claim Center: What do you say you need?
Deaf Claim Center: Contact our head officer email claim-lottery@yahoo.com

Rebecca Dufek: I need an official business address, phone number, contactr person by name, and an official email. What you have provided is not a business email

Deaf Claim Center: Its all you need to do to contact our head officer..You are sounding too forward,and seem you want your prize to be given to a motherless babies home.

Rebecca Dufek: I am reading that you are a scam. If you are not, you would provide me authenticity that you are legit
Rebecca Dufek: if you were an actual nonprofit, you would provide what I have asked for

Deaf Claim Center: You are not guessing or reading right..You are only trying to be too forward..

Rebecca Dufek: you already made contradicting statements

Deaf Claim Center: Oh really?

Rebecca Dufek: are you actually deaf?

Deaf Claim Center: Good for me..As i wont have to waste my time explaining this to you again..

Deaf Claim Center: I am not a deaf.I work with the charity organisation period..

Rebecca Dufek: I am with a nonprofit and am aware that they have protocals and tax id numbers to prove they are legit
Rebecca Dufek: I am a fundraiser and am so inclined to prove I am not a scam

Deaf Claim Center: Sure you got it right,contact the email i gave you,then you get all of that,i am not in position to waste my precious time explaining that to you..

Rebecca Dufek: this is interesting. I am going to post our conversation on my blog which is read internationally

Deaf Claim Center: Thats good go ahead..

Rebecca Dufek: so one last time, what is the business mailing address, phone number, website, and contact number for this prize?

Deaf Claim Center: You got an answer.Go ahead and post the conversation cos people who reads it know how real it is..

Rebecca Dufek: so if you were in my shoes, you would gladly give out your personal information without any proof or verification that it is not a scam?

Deaf Claim Center: I told you to contact the organisation head office email i gave you,they are in position to review this to you not me..
Deaf Claim Center: Okay

Rebecca Dufek: LOL if you were legit and working for such a charity "non-profit" organization as you claim, you would provide me an official email and contact person and not a spam address.
Rebecca Dufek: How did you get my email anyway?
Rebecca Dufek: It is pretty sick that you are so desperate you are reaching out to innocent people with disabilities or deafness who may be completely unaware of what is going on
Rebecca Dufek: You will not mind me contacting the NAD if you are legit then.

Deaf Claim Center: Whats going on with you really?
Deaf Claim Center: You are just make conclusion that can land you in jail forever..

Rebecca Dufek: LOL I think you got that the other way around buddy!

Holes in Deaf Claim Centers claim

First of all, the profile for this person was completely blank! If the person actually representing a nonprofit charity and was official, the person would have listed the nonprofit organization, address, phone and fax, email, website, and their title if applicable in their profile. Somebody does not just work for a paid position for a charity and use their own personal email or IM account.

Secondly, throughout the entire conversation are numerous spelling errors and improper grammar. The dialogue is not presented in a professional business like manner. It is as if the person actually speaks english as a second language. This is one of the reasons I inquired if he/she was Deaf.


Immediately in the conversation, the person makes a comment about being affiliated with the National Association of the Deaf NAD) but then relates being deaf as a disability. This is highly contradictory information. In fact, many people from the Deaf community view their hearing loss as NOT a disability. When I briefly hint towards this, the person does not catch it and seems to be completely unaware. If in fact this person did represent a charity advocating for Deaf people, he/she would be aware of the community's cultural ideals. Deaf are a pretty tight knit group and those who are hearing involved with their organizations, are very close and familiar with their culture and values.

On SEVERAL occassions, I ask the person to provide some form of legitamacy by providing the contact information and website of the organization he/she is representing. EVERYTIME, my request is evaded and I never do get the actual information for the organization. All that the person has told me is that it is the "Deaf Charity Organization" and to contact an unofficial spam like address "claim-lottery@yahoo.com".

When I keep pushing for a physical address and contact info, the person starts to get defensive and reacts as if cornered. Politeness disappears and he/she tries several desperate tactics to gain my trust from reassuring that scam artists have been arrested to threatening to give my prize to "motherless babies" (who would definitely be more in need of financial assistance). Further, he/she starts making racial comments, throwing religion in the mix, and begins even questioning my reasoning as if there is something wrong with me for not agreeing to the scam.

"they are wicked people who dont have the fear of GOD in there heart they are indians living in america"

"Whats going on with you really?"

Further, "the claim officer" as the person professes to be, starts insulting me and ends with a completely absurd statement which does not make any sense what so ever.

"Sure you got it right,contact the email i gave you,then you get all of that,i am not in position to waste my precious time explaining that to you.."

"Good for me..As i wont have to waste my time explaining this to you again.."

After I tell the person I am going to expose them on my blog...

"You got an answer.Go ahead and post the conversation cos people who reads it know how real it is.."

"You are just make conclusion that can land you in jail forever.."

The more I push, the more the person gets desperate and changes tone and starts making threats and rude statements. This simply would not happen in a professional setting if this indeed were legit. The entire situation is full of holes and I hope this provides you with a good example of how to recognize them should you be contacted.

Be careful out there!

13.1 miles in 2:04:28; Eugene Half Marathon

Here I am the running the last mile. I was a little afraid to put forth too much energy on this last stretch because I saw people running in the opposite direction. I was worried I was going to have to run back the other direction before reaching the finish! hehe Thank goodness when I made it to the corner it was clear that those were people far behind and that I did not have to repeat that stretch!
The ribbons on my back are in memory and honor of donors or their family members with NF2.

At times of economical turmoil in this country, I am thankful, amazed, and honored for the support of many generous people! I know there are several very good causes out there and I am familiar with what it is like to have to be choosy as it is difficult to support them all. I am incredibly touched by those who recognized a real and dire need for NF2 research and chose to support my efforts. I am forever grateful to you and I know the rest of the NF2 community is also. For the 2009 half marathon, I raised over $5000 and miraculously met my fundraising goal by the event! Two weeks prior I was barely at a quarter way toward reaching my goal. I was a little worried as I knew after the event I would have to shift my focus to addressing another growing tumor over the next couple months.

It is not too late to donate and I will be able to accept donations on my fundraising page for the next month and checks throughout the remainder of the year.

For those far away or those near who sincerely would like to help with my current medical situation but do not have time to give, I would GREATLY appreciate a contribution of any amount you are able to offer and want to share toward my fundraising efforts for NF2 research.

Donations can be made securely online at my fundraising page at www.firstgiving.com/rebeccadufek

What is NF2 research?

Currently radiosurgery and surgery are ineffective at stopping the growth of our brain, spinal, and other tumors on nerves in the body. Researchers are working hard testing different theraputics to find one that will stop this cellular growth which causes hearing loss, vision loss, loss of balance or mobility, loss of motor function, and many other essential abilities needed to function normally (see my previous post explaining NF2).

Thanks again to all who helped me to acheive this goal and made it possible for me!

In the coming weeks and months, I will be discussing what is coming up next for me. So keep checking in and happy May NF Awarenss Month!

What IS NF2?

NF2 is the shortened name for the genetic disorder know as Neurofibromatosis Type II.

NF2 causes tumors to grow on cranial nerves in the brain and nerves within the spine. Tumors may also grow on nerves elsewhere in the body.

Due to the lack of the supressor gene Merlin, there is an overgrowth of the nerve sheath cells lining the nerves, brain, and spine. These cells are known as schwann cells and the tumors may also arise from the meninges (covering of the brain).

NF2 is not contagious nor something you can "catch". People with NF2 have had the disorder since birth. After conception when the cells are forming an embryo, the disorder is either inherited from a parent with NF2 or for an unknown reason, a spontaneous mutation occurs to the merlin protein needed to stop the cell replication process of the nerves.

Who Does It Affect?

50% of those with NF2 have inherited the gene and 50% are a spontaneous mutation.
(Which am I? Apparently, my mutation did not give me super human strength or the ability to climb walls! hehe)

New studies indicate that 1 in 25,000 people have NF2.

NF2 affects both sexes, all ethnicities, all around the world.

Generally, as the tumors grow, symptoms begin to manifest during the late teens to early adulthood (20s). However, there are cases of people being diagnosed later in life as well as younger children. With new testing and familiarity with the nature of NF2, I am seeing more children being diagnosed at earlier ages (3,5,7).

What Problems Does It Cause?

The most common manifestation of NF2 is hearing loss or total deafness caused by tumors growing on both auditory nerves (8th cranial nerves). These tumors are know as vestibular schawnnomas and they are the "hallmark" of NF2. ALL with NF2 eventually experience hearing loss.

90% of people with NF2 experience vision impairment due to ocular abnomalties, ocular tumors, tumor or brainstem compression, or facial paralysis. Such results in lack of tear production, inability to close the eye, inability to open the eye, blurred or double vision, or loss of vision entirely.

50% of those with NF2 have spinal tumors which cause pain or some sort of disturbance to normal function.

A common struggle among people with NF2 is the loss of balance function making it difficult to do simple tasks such descending stairs or trying to put on underwear while standing. Often those with balance dysfuntion have an awkward gait and stagger around like a drunk. A few of us have been confronted by law enforcement officers accusing us of being under the influence of a substance or drink. Some use a cane or need a wheelchair to get around.

Also common among many is muscular atrophy or "muscle wasting". At one point before I began a regular regimen of strength training (lifting weights at a gym), I could not carry around a simple shopping basket without falling over and it quickly became too heavy to carry.

Other side effects which have resulted from complications of the tumors or treatment: facial paralysis, muscle weakness and loss of coordination in the hands, a condition known as "drop foot", facial pain or pain in the extremeties known as neuralgia, numbness in the hands, feet, legs, and face, tooth decay from lack of saliva production "dry mouth", swallowing or eating difficulties, chronic body pain, mental cognition difficulties, on rare occassion cancer, and in many case early morbidity (shortened life span).

Please visit our memorial page in memory of our young friends who have lost their lives to NF2: In Memory of Friends Lost to NF2

The Difficulty in treating NF2 - No Cure

As compared to brain tumors known as acoustic neuromas which are much more common in the general population, vestibular schwannomas grow faster and more aggressively.

Schwannomas infilterate the nerves making them surgically difficult to remove without causing permanant damage to the nerves and other critical atructures such as the brainstem.

The tumors that tend to be less uniform in shape having a nodular and bumpy composition or with tentacles, make both surgery and radiosurgery more complicated.

Even after radiosurgery and surgery, the tumors often grow back.

References

http://www.dinagoldin.com/anarchive/nf2.htm

http://www.theuniversityhospital.com/nf/aboutnf2.htm

http://www.advocurenf2.org/01_understandingnf2.html

http://www.nf2crew.org/

http://ghr.nlm.nih.gov/gene=nf2

http://www.genecards.org/cgi-bin/carddisp.pl?gene=nf2