A Beautiful Story I fell compelled to share

This has floated around the Internet and I am sure you may have seen it. I had seen it before but reading it again brings me to tears. My tears are of happiness that someone could stop what they are doing and have such an epiphany to impact a life in such a powerful and profound way, Also, I welcome tears as it was years that I went without any and could no longer cry. Many others with NF2 experience the same because damage to the facial nerve has disrupted the production of tears. Do you have any idea how frustrating it is to not be able to cry at all? How about at loved ones passing? Instead of tears incredible pressure built up around my sinuses resulting in an exhausting headache. Fortunately this function recovered and I can again release intense emotion through tears.

Back to the subject......this is a wonderful story worth revisiting again.

As she stood in front of her 5th grade class on the very first day of school, she told the children an untruth. Like most teachers, she looked at her students and said that she loved them all the same. However, that was impossible, because there in the front row, slumped in his seat, was a little boy named Teddy Stoddard. Mrs. Thompson had watched Teddy the year before and noticed that he did not play well with the other children, that his clothes were messy and that he constantly needed a bath. In addition, Teddy could be unpleasant. It got to the point where Mrs. Thompson would actually take delight in marking his papers with a broad red pen, making bold X's and then putting a big 'F' at the top of his papers. At the school where Mrs. Thompson taught, she was required to review each child's past records and she put Teddy's off until last. However, when she reviewed his file, she was in for a surprise. Teddy's first grade teacher wrote, 'Teddy is a bright child with a ready laugh. He does his work neatly and has good manners... he is a joy to be around..' His second grade teacher wrote, 'Teddy is an excellent student, well liked by his classmates, but he is troubled because his mother has a terminal illness and life at home must be a struggle.' His third grade teacher wrote, 'His mother's death has been hard on him. He tries to do his best, but his father doesn't show much interest, and his home life will soon affect him if some steps aren't taken.' Teddy's fourth grade teacher wrote, 'Teddy is withdrawn and doesn't show much interest in school. He doesn't have many friends and he sometimes sleeps in class.' By now, Mrs. Thompson realized the problem and she was ashamed of herself. She felt even worse when her students brought her Christmas presents, wrapped in beautiful ribbons and bright paper, except for Teddy's. His present was clumsily wrapped in the heavy, brown paper that he got from a grocery bag. Mrs. Thompson took pains to open it in the middle of the other presents. Some of the children started to laugh when she found a rhinestone bracelet with some of the stones missing, and a bottle that was one-quarter full of perfume. But she stifled the children's laughter when she exclaimed how pretty the bracelet was, putting it on, and dabbing some of the perfume on he r wrist. Teddy Stoddard stayed after school that day just long enough to say, 'Mrs. Thompson, today you smelled just like my Mom used to.' After the children left, she cried for at least an hour. On that very day, she quit teaching reading, writing and arithmetic. Instead, she began to teach children. Mrs. Thompson paid particular attention to Teddy. As she worked with him, his mind seemed to come alive. The more she encouraged him, the faster he responded. By the end of the year, Teddy had become one of the smartest children in the class and, despite her lie that she would love all the children the same, Teddy became one of her 'teacher's pets..' A year later, she found a note under her door, from Teddy, telling her that she was the best teacher he ever had in his whole life. Six years went by before she got another note from Teddy. He then wrote that he had finished high school, third in his class, and she was still the best teacher he ever had in life. Four years after that, she got another letter, saying that while things had been tough at times, he'd stayed in school, had stuck with it, and would soon graduate from college with the highest of honors. He assured Mrs. Thompson that she was still the best and favorite teacher he had ever had in his whole life. Then four more years passed and yet another letter came. This time he explained that after he got his bachelor's degree, he decided to go a little further. The letter explained that she was still the best and favorite teacher he ever had. But now his name was a little longer.... The letter was signed, Theodore F. Stoddard, MD. The story does not end there. You see, there was yet another letter that spring. Teddy said he had met this girl and was going to be married. He explained that his father had died a couple of years ago and he was wondering if Mrs. Thompson might agree to sit at the wedding in the place that was usually reserved for the mother of the groom. Of course, Mrs. Thompson did. And guess what? She wore that bracelet, the one with several rhinestones missing. Moreover, she made sure she was wearing the perfume that Teddy remembered his mother wearing on their last Christmas together. They hugged each other, and Dr. Stoddard whispered in Mrs. Thompson's ear, 'Thank you Mrs. Thompson for believing in me. Thank you so much for making me feel important and showing me that I could make a difference.' Mrs. Thompson, with tears in her eyes, whispered back. She said, 'Teddy, you have it all wrong. You were the one who taught me that I could make a difference. I didn't know how to teach until I met you.' (For you that don't know, Teddy Stoddard is the Dr. at Iowa Methodist in Des Moines that has the Stoddard Cancer Wing.) Warm someone's heart today. . . pass this along. I love this story so very much, I cry every time I read it. Just try to make a difference in someone's life today, tomorrow, just 'do it'. Random acts of kindness, I think they call it! 'Believe in Angels, then return the favor

Panorama Point

As I approached the famous Panorama Point on Mt. Rainier I threw my hands up into the air and exclaimed in exhilaration "I made it!". Unbeknown to me, a hiker saw me who was coming down the mountain from further up the trail. When I turned to face him I was a little embarrassed but then I thought "What the hell!". I did not care. If he had known what I had been through, he most likely would have done the same.

The very last time I had made it to this point was when hiking with my dad over labor day 2004. It was not even 2 months post radiosurgery for me and I was souped up on another dose of steroids to control the brain swelling I had been experiencing. Because it was still early in the swelling phase of the tumor, my balance and vision had not been fully affected yet. I actually had quite a bit of balance left and the steroids were carrying me through.

By spring of 2005, I experienced the apex of my loss of balance to the degree that I would fall over and not even realize it if I closed my eyes while standing on flat ground. It was very disheartening. With my soul so tied to the mountains and the sea, I was just devastated to be torn away from the activities I love (hiking and diving) and many more.

In 2005 I did not even visit the mountain. It was such a hard year. In 2006 I began to improve and we took a trip to the mountain for my birthday that September. For a change, I was not so concerned with reaching the highest elevation possible. Instead, we took the paved meadow trails and then with hiking poles I was able to make it part of the way up the unpaved trails. We reached my end point where the terrain became to rocky, uneven, and scary (I am not afraid of heights but of falling which is easy to do once you loose your vestibular function.).

In July 2007 I returned again with my aunt and uncle. The snow line was much lower at that time of year so we only went as far the fields of snow. The way up all the stone stairs was okay as I was using my poles. However, it was extremely slow going down and utterly terrifying for me! I imagine watching me inch my way down the cut out stone steps was similar to watching somebody agonizingly learn to walk again. It was pretty stressful but I had been determined to go up the far and had to bear the consequence of going back down (kind of like a cat climbing a tree).

This time it felt great and I went higher than I had with my dad in 2004. We (Harley and I) started out at the visitor center which is at 5400 feet. Panorama Point is at 6800 ft and we passed it. According to the map, the distance we traveled above the point, and the trail, I figure we went to at least 7000 ft. And did I mention I went all the way up without using my poles!? I used the poles for the way down but I felt fine and it was not so scary. I felt rather efficient and what took me so long is that I kept stopping to take photos! hehe ;o)

Here is a map showing our route: http://www.nps.gov/PWR/customcf/apps/maps/showmap.cfm?alphacode=mora&parkname=Mount%20Rainier%20National%20Park

End of summer flowers on Mt. Rainier

And I thought I had took a cool photo of the wildflowers at Mt. Rainier! Check this out: http://www.garyluhm.net/bio/tripsrainier.htm#

Our visit was on Sunday September 14th.

It is GREAT to be a survivor!

TSNW friday hiking group; I am pictured in pink on the right

TSNW = Team Survivor NW

It is a fitness and wellness support group for women cancer survivors and patients. Check out the link for TSNW in the left margin of this page under the heading "Places Where I Train to be a Survivor".

P.S. - For those of you visiting my page for the first time or are new to the NF2 Odyssey, I am also a cancer survivor. 15 years ago (Fall 1992) I was diagnosed with lymphoma cancer known as Hodgkin's Disease. This was 7 years prior to the time we discovered I had NF2. In fact, the reason I was diagnosed with NF2 so quickly after a poor hearing test in 1999, was that an ENT had reason to order an MRI of the brain. He had an idea that may bizarre hearing loss at such a young age could be the result of a brain tumor. He was correct! And it was just not A brain tumor but SEVERAL - reported as too many to count.

After finding out my head looks like a lit up Christmas tree from all the tumors, we had to determine if the cancer returned or if a different kind had started. Therefore , I had to go through all the fun of cancer testing all over again. (NOT! LOL). While it was a relief that I did not have brain cancer (back in 1992 the average survival was about 5 years for brain cancer), it still was little comfort that I had all these tumors up there for life which were incurable, would continue to grow, and chip away at my quality of life FOR THE REMAINDER OF MY LIFE.

Over the years I have been told that the cancer and NF2 are completely unrelated. I guess I just was not very lucky! However, it is very likely that my genes lack an essential tumor suppressor gene which made me susceptible to both. There are a few of us with NF2 and NF1 who have had or have cancer too.

I have learned to live with the losses and have worked very hard to get back what I can. This is my best year of the previous 4. So to me, being a survivor is even more meaningful as each day is a practice in survival to make the best of my situation.

Destination

Jane: "We are going to go here. - Middle Falls"

Me: "No. I want to go here! - Upper Falls"

Jane and I happy at the lower falls and ready to continue on.

Thursday September 11th, the anniversary of my terrible downturn last year with trigeminal neuralgia prompting a sooner date for my first surgery, Jane and I set out on a hike I have not been on in over 10 years. It was an absolutely beautiful day and perfect for a hike! The weather was great and the trail had a very low number of users. The reason I have not returned to this hike in so many years (even before I lost balance) is that it is very popular on the weekends so much so that the parking lot is always full.

This is the first time in 4 years that I have felt brave and confident enough to handle the terrain. Therefore, I wanted to go all out and reach the upper falls. Beyond that point is pretty back country and many people have gotten lost so there is a warning about being prepared and having the necessities for an extended hike.

Afterward Jane took me out for my favorite Thai food to celebrate my 31.5 mile accomplishment. What a terrific way to end a fabulous day of hiking!

Thanks Jane! Spending the day hiking with you was absolutely wonderful and the dinner was equally as marvelous!

I of course took many photos but will have to post them next week when I return. So keep checking back as there is more to come! :o)

Photos of the 31.5 mile trek

Harley and Jake at Rattlensnake Lake at the end

Mt Si along the road detour

Me along the Snoqualmie river 5 miles from the end

To view all the photos from our journey with descriptions, please visit this link: http://picasaweb.google.com/RebeccaDufek/315SVTQuest4NF2Trek

Update on my peanut

I did take Katie to the vet as soon as I could get her in a couple weeks ago. She is having arthritis in her hips so I had to give her pain medication, a week off, and then a week of very short walks. Thus, she definitely could not go with us on the 31.5 mile hike. The original plan was to take the dogs for 10 miles because I felt that was a comfortable limit for her without her hurting.

She seemed sad the morning of the hike but knew she was not going because she stayed on the deck and never came down to the truck when we were getting ready. After I had taken her to the doctor and given her pain medication without walks for a few days, she appeared to understand what was going on.

She tolerated the medicine very well and it worked wonders! We started out with a 30 minute walk a week ago last Monday and then built up a little more each day to 55 minutes. Thursday, Friday, and Sunday I did not walk them because I was going on extended hikes. Saturday evening we did hill walking in Daniel's ranch and then ran a couple laps last night around the dog park.

She is doing just great but I am careful to not overdo it for her. We will be gone Thurs-Sun so she will get another 4 days of rest which will help so we can return back to our hour or longer walks next week.

I am so happy that the medication worked out for her! She is really spunky and energetic so it is hard to see her hurting and to not take her when she wants to go for a walk.

Photo Frenzy

Good grief I take a lot of photos! I guess that can happen when you are gone for hours at a time in a scenic place. For now, I am uploading all the photos from our 31.5 mile HIKE4NF and later I will pull out ones that do not need to be there. I also have photos to upload from Mt. Rainier on Sunday, Wallace Falls hike Thursday, Tiger Mountain hike a couple weeks ago, the dive event photos from the same weekend as the 31.5 mile hike, and I think the photos from our 15 mile training session in Snoqualmie Pass.

I will definitely post the picassa link today for the 31.5 mile hike.

Tomorrow I have to get packed, go to water aerobics and lift AND walk the dogs, and then lie through at 2 hour spinal MRI. We are heading to Portland for my medical appointments and then to the beach. So there will be even more photos to come! Maybe I will not write for awhile when I come back and just post different photos everyday until I am caught up.

Anyhow, get ready for lots of photos and my absence for 4-5 days.

Hike Recovery

We are doing well! The first day we were a bit stiff and sore but the training, IB Profen, and ice water bath after the hike were very effective. Harley is back at the gym (Gold's in Redmond) working with his trainer while I have continued to increase my walking time per day (30 minutes Monday, 40 minutes Tuesday evening, and 55 minutes last night). In addition, it felt great to be back at water aerobics yesterday where there was the largest class I have ever seen since I started over a year ago.

The soreness is definitely gone but our energy levels have been kind of sapped. I was going to do my weight lifting routine at the gym yesterday but I was way too tired. I had a hard enough time staying awake on the 15 minute ride home from town. I was very tempted to pull over and take a nap! When I finally got to our driveway I was too tired to get out and check the mail so I fell asleep for a 25 minute power nap in my truck! The dogs were probably kind of confused why I did not finish driving up the driveway and was sitting in the truck for so long. Harley has been very sleepy too and immediately conked out on the couch when he came home from work. On Monday and Tuesday night I had already crashed before he got home and he was unable to wake me.

It is strange that way. I put all my energy into what I am doing and feel fine during the activity. Later, I am extremely lethargic and have a hard time keeping my eyes open. Perhaps I am running on adrenaline at the time until it becomes depleted.

Ready to Dive

On Saturday we went to the DOG (DUI Owners Group) dive rally to try out some of their demo suits. After nearly 4 and a half years since my last dive due to so many complications from NF2, I FINALLY rejoined the underwater world once again!

I had a challenge getting in and out of the water which required help but once I got in with my fins on (they kept falling off), I was very comfortable. The goal of this first dive was to see if I would even be able to tolerate it anymore. In the time which has past, I have become smaller than I ever was while a diver previously. So the concern was whether I would stay warm. Further, as of last year, I developed a condition where my hands are EXTREMELY sensitive to cold and my fingers loose blood circulation. The loss of circulation causes the fingers to turn white and stiff like frostbite. It is known as Raynard's Syndrome. My only hope was dry gloves so I had the opportunity to test it out before investing in some.

I am very happy to report that both my hands and body stayed warm. Thus, I can still dive in the cool and baumy 50 degree waters in the NW.

I have to admit that getting prepared and suited up to dive here is a very daunting and exhausting task for me now. But once I got under the water it was all worth it!

More to come with a dive report from Saturday.

Success! From Beginning to End

Harley and I completed our 31.5 mile trek yesterday from morning until evening within our estimated time.

It was great! Although it was a dense foggy all morning and did not burn off until 1 pm, it worked out well as that was during the time Jake hiked with me. He ate all of his snacks and drank all of his water and some of mine too! However, he was able to keep cooler for the 17 + miles without the hot sun beating down on us. He did wonderful!

The remainder of the day was sunny and beautiful! I took lots of photos I will share later.

Thanks to Harley for accompanying me on this entire journey. You are absolutely amazing and I am so extremely lucky to have the good fortune to be blessed with someone so loving and supportive! Thank you also to my parents, my sister, and my friend Jane (and of course Jake and my sister's dog Spud) for joining us and keeping company on various legs of the hike. You made the day very enjoyable and memorable! We greatly appreciate your participation, help with coordination, and your cheers!

Finally, thank you to all my supporters both in contributions to NF2 research and encouragement. You helped keep me motivated which not only was meaningful as far as raising funding and awareness for NF2, but also helped keep me healthy, in shape, and positive for the surgery ahead. I definitely feel a lot stronger going in this year than I did last year. I have not spent my entire summer fretting and being fearful. Of course, as medical reality draws closer, I do have thoughts and anxiety about the unknown and what possibilities exist. However, I am much more content. I spend more time being happy and savoring life than I do crying about it. I don't know if you are able to fully grasp what that is like...to have life hanging in the balance but to find ways to go on and get what there is out of life. It is an extraordinary gift which you have helped me to discover.

There will be more to come throughout the week about this journey. Like I said, I took lots of photos and for those who know me well, I can tend to get carried away. ;o) Keep checking back this week for when I post more. For those of you on my email list, I will be sending you out an email with links and pictures.

Thanks again for making this possible and helping me to believe in myself!

I'm in the news!

I forgot to post this and have not sent out an email yet as I am trying to figure out how to use an email campaign service. In mid-August Lisa Allen of the Valley View newspaper (serving Carnation, Duvall, and Woodinville) wrote a fantastic article about me and the hike that I am doing this Sunday to raise funding for NF2 Research.

To read it, please click the following link or paste it in your browser:

http://www.nwnews.com/editions/2008/080811/front4.htm

The injured.

My poor little peep (Katie) started limping around Saturday night and looked worse on Sunday. To refresh every one's memory and get all new visitors up to speed, Katie (our girl dog) had surgery in May 2005 for a cruciate torn ligament (ACL) and a dislocated knee cap. So we need to be careful with her, watch her weight, and give her joint vitamins.

For whatever reason (change in weather or taking off sprinting after an animal at the dog park), the previous injury has acted up and I will not be able to bring her with Sunday even though she would really love to go.

Sunday evening when Harley and I left to the watershed for a 1 hour training hike, Katie and Jake were overjoyed and jumping around as they thought they were going to come with us. Even though she tries very hard to hide it, I had caught her hobbling around when she thought I was not looking. Despite her eagerness and enthusiasm, we decided it would be best to leave her home to rest. I did not want to leave her behind alone so we did not take Jake and I do not think he was too happy about it. When he saw us getting into the car instead of the truck, he gave her a childish swat and look like he had just non verbally communicated to her that she ruined his fun time. (They are silly like that and share a great deal of nonverbal communication through looks, gestures, and mannerisms.)

At any rate, it was very obvious they were disappointed.

On Monday Katie did not seem much better and was limping like she had before her surgery. I gave her the full day to rest and when it came time to take a walk, it just pulled at my heart strings to not bring her because although she was hurting, she really wanted to go. She is a tough little girl and I have learned much from her perseverance in dealing with my own medical ordeal.

Jake loves to go out and even run too. He had waited all day for me and he did not get to go on Sunday. I could not punish him by leaving him at home when I had to go anyway. In order for Katie not to feel so bad and left out, I gave her a huge rawhide chew for her to busy herself while we went out for a walk. This seemed pretty effective the first day but was not as successful yesterday.

While doing dishes in the kitchen a couple hours before sunset, Jake jumped up to peer at me in the window behind the sink as if to say "I am ready mommy! We have to go or it will be dark soon. Don't forget me." So I definitely could not go without him yesterday either. He has been with me training for over 3 years (during my recovery after radiosurgery, imbalance, brain surgery, and for the Seattle marathon 2006 and the hike on Sunday). He deserves to come with as he too has been dedicated, has worked hard, and has been a loyal companion.

At first when Katie's injury developed over the weekend, I was thinking we definitely could not bring the dogs. I did not want to leave her home all day by herself because I knew she would be very hurt and know that she was left behind. We are all very bonded and it would not seem right to leave her out of such an important event for us. At the same time, I felt incredibly guilty to not take Jake on our journey. It was a difficult mix of emotions where I felt "between a rock and a hard place".

When Monday rolled around and Harley was training on the treadmill at the gym, his ankle began spasming again with sharp shooting pain. This had happened earlier in our training when we were intending a long hike but had to cut it back to 6 miles. He was wearing a high top hiking boot so we thought a low top comfortable training shoe would do the trick. Apparently, there is something greater going on and he will need to have a doctor look at it.

Therefore, Harley will not be able to join me on this adventure. He is disappointed but I do not want him to do irreversible damage to the injury by trying to do this 31.5 mile trek. This situation makes me feel better about taking Jake with me now as Katie will not feel so bad if Harley is home with her. Further, I am now considering taking Jake along for the entire first half of the trek to where the trail ends and meets the road as he has the endurance and stamina to handle such a distance. Originally, the plan was to limit the dogs to 10 miles because the next access to the trail was past 12 miles and I felt that would be pushing Katie too hard.

It will be interesting to see how he reacts come Sunday morning as he did not want to go without her yesterday. Make no mistake, he really was eager to go out and train but he wanted Katie to come too. Every time I prevented her from going up the ramp into the truck, Jake would jump back out of the truck bed. I tried giving her a bone but she brought it with her from the yard to the parking lot. Then as soon as I would try to put the ramp away Katie would put her front paws on the tailgate and try to jump up while Jake jumped back out again.

It killed me to say no and pry her paws off the tailgate. Imagine telling your kid he/she has to stay home while you take your other kid out to the movies, the beach, park, or wherever. Not so fun, eh?

I had to block the back of the tailgate with the dog ramp standing on its side so Jake did not jump back out again. When I managed to close the tailgate and was shutting the canopy window, Jake gave me a puzzled look as if he were wondering why I was not bringing Katie too.

One final injury to report:

Yesterday afternoon I got a sliver in my heel in a spot where I could not see to extract it. After poking and prodding my callused heel with a pin and tweezers, I was not having much success. So I soaked it in the bathtub in order to soften this skin and try to encourage the splinter out.

I managed to pull out half of it but the other half had broken off and was deeply embedded in my heel. When I took a walk last night, the heel was sore after an hour and I was concerned about infection. Therefore, this morning I assigned Harley the task of digging it out which was not a joy to experience.

Afterward, I soaked it in Epson salts and dabbed it with hydrogen peroxide in attempt to make it heal faster. It is a gorgeous day out and I would have a hard time adhering to the rest schedule which is today. So I guess this is God's way of making me take it easy to prepare for the big day and also creating a brick wall for me.

Are brick walls bad? No. As I learned this morning while reading "The Last Lecture", brick walls are a way of testing us....a way to force us to confront what we really want and how badly we are willing to pursue it.

I badly want to complete this hike. Why? Because people are counting on me. It is what I said I would do in exchange for your support in finding a cure for NF2. It is how far I am willing to go to get this started so that someday we find a way to stop these tumors from growing. I and others with NF2 will be able to stop putting everything on the line....... our lives and quality of life will no longer be at stake each time we face a treatment. That is why. All of this is my brick wall which I will find a way to climb over.

Shopping for Supplies

In the final week leading up to the hike, I am making preparations and getting last little odds and ends I need.

Sunday, on our short 1 hour hike in the Redmond Watershed, my rear end became completely soaked from my hydration bladder which was leaking from somewhere. Thus,,most of the water went ON me instead of IN me. That is no good! So I had to take a little REI shopping tour yesterday to find a new water bladder.

In addition to needing a new bladder to hold all of my water, I decided it would be a good idea to buy new batteries for my head lamp. I am shooting to complete the 31.5 mile trail by 7 pm. Although the sun sets by 8 pm, the final 6 miles of the trail are tree covered and quite dark. When we hiked the watershed Sunday night we had to cut our training 20 minutes short because the park closes at 7:30 pm which in the forest is considered dusk.

In the event that I end up behind and not keeping my intended pace, it is quite possible I will end up on the trail at dusk or in the dark. Therefore, I felt it a good idea to bring my head lamp and have it ready just in case. Once it turns dark I slow down as it is harder for me to walk with my imbalance. As a result, if I end up in that situation it will take me longer. Fortunately I have a very high power head lamp which puts out lots of illumination.

I do not have a good history with sunglasses. Within this summer alone I have lost 3 pairs and broke 2 pair. One pair it is unknown where they disappeared to, another I lost while training when I took them off in the dark woods, and the other fell down the honeybucket hole when they flew out of my pocket while I was trying to pull out a handy wipe. After investing in yet another pair on Saturday, I finally broke down and bought a sunglasses retainer yesterday during my supply hunt outing. The retainer is a cord which attaches to the sunglasses so I can keep them safely draped around my neck whenever I take them off.

The last item on my list was a new hose clip for my hydration pack. The old one was velcro and had become worn out to the point which it did not fasten well anymore. Camelpack makes a new kind which snaps shut so I will not have to worry about developing the same problem again.

I am pretty sure I am all set. The only thing I can think of off the top of my head is some mosquito repellent. When we did our 15 mile hike the bugs were coming out in full force around between 5 and 6 pm. Now that it is weeks later and cooler, it is pretty certain they will be out earlier (especially seeing that the trail crosses a river in the final portion and ends at a lake). A lady I know who lives nearby sells Avon so I am hoping she has some trial size bottles of "skin so soft" as I prefer to use that over stinky repellant.

This is a good reminder to make a list to make sure I do not forget anything critical (like my water bladder I forgot last week).

Training Taper

With the our grand hike just barely over a week away, we have been cutting back on our mileage and I on my weekly training. We both still do our weight training, Harley's cardio, and my weekly water aerobics session at Gold's Gym in Redmond. But for the most part the high mileage has been drastically reduced in order to conserve our energy for the big day.

I took the last 2 Mondays off completely as rest days and it was really hard for me. I felt really lazy and like I had become a sedentary couch potato. Although I did have many other things to get done and still need to finish, guilt set in that I had taken a day off from training my body. Further, my dogs were not any help when they layed around on the deck all day and gave me sad eyes.......heart renching and I felt like a bad mom for taking time to do other things I needed to do.

Last week I took 2 rest days off from walking. On one of the days I went to water aerobics and did a long workout on my legs at the gym. On the other days I stuck to about an hour brisk walk and one day I ran.

For this week I went back to Daniel's Ranch to do my hill training and this time I ran it for 45 minutes! It was rainy and getting dark but for a run and a running up a hill it felt much more refreshing than the sweltering heat we had 2 weeks prior. I actually prefer running when it is cooler and then rain feels great! I do not perform well and have a difficult time breathing and tire sooner when it is hot.

Sunday we had a very short training session of 6 miles. I am going according to the training schedule when I did the Seattle marathon. According to the plan we were to training for 1 hour 40 minutes but since we are doing a greater distance, I bumped up our training for longer so we could cover a greater mileage.

This weekend will be an hour and 20 minutes but I will shoot for 4.5 miles which should be about an hour and a half. It is really hard to cut back on mileage after doing such l0ng distances. We are supposed to have 3 complete rest days next week and I will have a difficult time doing that as well.

Because we were doing such a short training session, Harley thought we could carry less things and was opting for just a water bottle instead of his hydropack. Part of training is preparing to carry and use everything you plan to have with you on event day. Thus you gradually end up bringing more as you hike less. If you are a runner for a marathon it is different as they get through the course faster, will get hotter, and need to carry as little as possible (they use a hydration belt and then for marathons there are lots of water stations with gatorade and sport gels. We have no aide so we need to carry everything we need with us just as if you were going to take a long day hike in the back country.)

So after going on about my whole mantra about preparation I made a very stupid mistake. A mile and a half into the trail and I went to take a sip of water but could not find my hydration hose! I was a little confused and thought I must have cramped it into the pack without setting up the hose. My pack was heavy because I had the bottles of water for the dogs so I did not think I was missing anything when I left the house because my pack was heavy.

I FORGOT MY FREAKING WATER!!!!!! I has put the bladder in the refridgerator to keep it cold and then forgot to grab it before I went out the door. Wow! That is not an error I want to make on hike day!

(Why I did not drink the dog water bottles......I had become accustomed to pouring the water the dogs did not drink back into the bottles and did not wash them. Therefore, they were designated dog water bottles and I was not too keen on swaping dog spit with them.)

What did I do? I had to drink off of Harley's hydration pack which is not enough to last us through the whole trek next Sunday. With my facial paralysis, I have a difficult time drinking the water off his too. So it was a good thing it was a short trek.

water I carry: 64 ounces for the dogs and 48 ounces for myself for the first half of the trek. At 15 miles I run out so I will need to switch out the 64 oz. bottles when we drop off the dogs at the 10 mile mark.

Message to Gale

Gale,

My emails to you are not going through. I did not know how else to reach you and hope that you read this.

Something must be wrong with charter.net because some of my family members have the same email service program and all of the emails I sent to them have been returned with a mail delivery failure.

Thank you very kindly for your donation! I have not written hand written thank you notes yet because I am waiting until after the hike next sunday so I can let everyone know how it went.

I don't know how the weather is for you down in Oregon but it has cooled off and become rainy out here. Months ago I looked back at last year's forecast for that date and the temp was in the high 50s. So I have planned to wear and bring layers and my rain jacket. I just got my rain pants yesterday from the REI outlet online. I have to try them on today to see which pair fits.

I do not mind hiking in the rain. As a matter of fact I do better in cooler weather than hotter. When I did the Seattle marathon it was snowing the morning before we started!

However, I am hoping there will not be hard or continuous rain on our journey (my husband Harley and I) because I have not broken in my waterproof hiking boots yet. I have been training in my summer non-waterproof pair. I will have to plan to bring some spare socks with me and if my feet get really wet and it is intolerable, I have my phone to text someone to bring my other pair at a point where the trail can be accessed.

I am wearing Salomans which both Harley and I have found to be incredibly comfortable. My feet are used to the hikes so I have not gotten blisters with the exception of one after the 18 mile hike which I did not even notice for a week. So I figure if I can get through the first half with my one pair of broken in boots, I should be ok with the new ones for the second half if need be. My waterproof pair are virtually the same and the same brand so I am pretty confident about them. I have to remember to bring some Nexcare bandages and stuff for blisters in case we have a problem with them.

So a little over a week to go for the big day! Woo! I am getting a little nervous and excited at the same time.

If Jodi Harrington can weather heat, snow, rain, and a 35 pound pack at an average of 25 miles a day for 6 months straight, I can surely handle 31.5 miles in a day. Right?

Send me an email to know you got this and what your current address is.

Hope your summer has been well! :o)

A Little Taste of Freedom

A week ago Friday I had something completely amazing and exhilarating happen to me! For the first time in 4 years or more, I descending a set of stairs without grabbing, touching, or leaning on the handrail! What is even more impressive is that I descending not only one set of stairs without using the handrail but I walked freely down 3 sets of concrete and wood stairs at the Pike Place Market in Seattle among groups of other people passing by!

First let me explain that such a feat has been terrifying for me since I completely lost balance function in 2005. After losing my balance I quickly discovered how painful it was to be falling all the time and as I lost more weight I also lost more cushioning which once protected me. Therefore, the darker the stairwell and the harder material each stair was built of, the scarier the stairway became. If it was a large set of stairs I would stand at the top, take a gulp and hold my breath as if I were about to parachute off a 1000 foot cliff. I clutched the handrail for dear life!

It has been 3 and a half years of constant work. For one, I had to learn to brave going up and down stairs because I live in a house with 3 sets of stairs that I use daily. I cannot get into my house or up to my bed without using stairs. I have been like a cat. It is okay going up but not so okay going down. I had to train myself to accust0m my body and balance to walk up and down stairs again and to overcome my fear. To not do so, would have meant surrendering my lifestyle and leaving the home I love so dearly.

2005 was a hard year, 2006 was building up my endurance again and stamina, and the last year and a half has been for building up my strength again and improving my balance. Since Feb-March 2007, I have been consistently adhereing to a training regimen of weight lifting, water aerobics, and practice on a balance device at the gym. Without it, I do not believe that I would have come this far.

The locker room is upstairs at the gym and even though there is an elevator I refuse to use it. I used it in the very beginning but after a couple months I felt confident to use the stairs and felt I needed to challenge myself and practice.

The stairs are very safe and rubber coated with slighty raised dots for tread. Therefore, I am not as fearful on them and both handrails are within safe grasp. Gradually I built up my confidence and started to not rely on the handrails so much until I was barely touching them. Within the past month, I have practiced letting go and descending the last 4-5 steps where the staircase widens.

Then a couple weeks ago I was able to walk down my deck stairs without keeping both hands on the handrail. I had to stop and think about it at the top but as I neared the bottom the feeling of walking down stairs normally just sort of naturally took over. I was so incredibly happy that I had to do it again about 2-3 more times to believe what happened. Then I cried tears of joy and the release of pain from being restricted over the past few years.

I don't know if you can really understand. Before I lost my abililty I would run up and down stairs without thinking about it, nudge close to the edge of a cliff to peer over the edge (I could not help myself), and freely rollerblade efficiently all over jumping ruts, bumps, and curbs. I could never imagine what this could be like....being restricted from your freedom of movement.....how what could seem so easy and simple become an arduous task causing you to break a sweat!

When my balance was still very poor, I was taking ASL classes at the community college where there are several young people hustling and bustling about. Everytime I saw someone skimper down the stairs while carrying a large bag or backpack and head turned chatting to a friend or a cellphone propped on the other shoulder, I would become incredibly saddened. I all of a sudden felt very distanced from my youth and like I had become old and feeble while in my prime. It was tough and still is on occassion but I am more adjusted and accepting of it now.

The loss of balance for me has been very hard and caused a deep and long mourning for my older self that skied, rollerbladed, hiked rugged trails and enjoyed the thrill of elevation and challenging hikes, did more shore diving than boat diving (scuba) which expanded my options greatly, was very efficient at slalom waterskiing and even skiied on surfboard behind a boat once, and was able to handle riding my own motorcycle. When the tumor took my balance all these things and my way of life stopped...was cut off cold turkey as if I was put in handcuffs and locked away. It has been very difficult and took a long time to adapt to my new body and the limits placed on it from my balance digression.

Fortunately I have figured out a way get back some of my ability and to maintain it. I would be happy if I can maintain this current state as long as possible. Thus, as my friend who also has NF2 says "Everyday is a training day." Striving to stay healthy and taste the freedom is a way of life n0w.

So if you can relate to what I have been telling you, you can see why something as simple as descending a set of stairs without grabbing a handrail to me can seem a major accomplishment just like reaching the summit of a great mountain. For a moment, I am free again.

John Wayne Trail - our 15 miler

Where our 31.5 mile hike ends at Rattlesnake Lake, the trail connects to another railroad grade trail which continues east across the Cascade mountain range. From Rattlesnake Lake to Yakima it covers a distance of 86 miles.

July 31st SVT trek - Simple Beauty

At the end of July I took in a lovely hike through the agricultural region of the trai one beautiful afternoon.

To see photos of our wonderful stroll, please visit my picassa photo album at this link: http://picasaweb.google.com/RebeccaDufek/NorthSnoqualmieValleyTrailSVTThroughStillwater

There is an option to view the photos in slideshow format.

I finally found it!

The trail we will be hiking on is an old railroad grade which was used to transport supplies between the cities of Duvall and Fall City. It ends just a short distance from the famed Snoqualmie Falls and one must take a detour on the road to where the trail picks back up again and crosses the Snoqualmie river.

Now when I first reached the first trail end I had no idea where it continued and I ended up at the Snoqualmie Public Works Department. Because it was a weekend, I was locked in the fenced property and could not get back out to the main road.

After emailing the county, I found out that one must take a detour on the main road in order to reach the second part of the trail. So in mid June Harley and I went out to start on the second part of the trail but we never found it. I had forgotten to bring the directions and thought it would be easily marked and not far from where the trail ended. Unfortunately it was not and we ended up missing where it starts again and found access further east from a park in Snoqualmie.

Wanting to find where the trail traveled so I would not get lost on the big day, I went back out on my own midweek hoping the roads would not be so busy. I could not find the original email with the directions but I found a map a friend sent me online and I just memorized the name of the one road to foll0w. How hard could it be, right?

LOL Well to my dismay and the dogs, it was not so simple. We ended up walking at least a mile and a half down a road with no shoulder which surprisingly was more busy than I was comfortable with. It seemed like it was going off into nowhere and I did not want to end up getting lost and walking solely on this road. Further, it was getting really hot and we were mostly in the sun which was not good for the dogs. Therefore, I made the executive decision to turn around and take this other road.

The other road led to a different paved trail which brought us into the town of Snoqualmie within a couple miles. Meanwhile the sun continued to shine on us and the heat got to an exhausting level.

While in the town I came across people riding on a train along our trail. The tracks led to a historic train station where there was an event going on. Some older men were directing pedestrian traffic whenever the train came by. I thought surely they would know the mystery of the missing trailhead but actually they did not. I did get a map from one of them though which they had at the train station.

We got a little relief under a canopy while talking with the men. However, it was not getting any cooler and I imagine it was nearly unbearable for the dogs. Our route back was in the hot sun again so I decided to hunt for an access along the river north of town so the dogs could take a swim and cool off. Yet we only ran into high banks and a fence cutting preventing us from getting anywhere near the river. Where it was fenced was a small park with a faucet outside the bathroom. Now my dogs do not like being sprayed with water no matter how hot it is. Silly beings! Thus I had to drag them each by the leash and try to hold them under the faucet so I could get them a little wet to keep from overheating.

When I got back to the truck I drove around on all the roads near the river trying to pick up the trail again. I finally found a set of stairs which appeared to be to a foot bridge crossing the river. I could not check it out though because I had to get the dogs home where they could get relief from the sweltering heat in their favorite place under the deck. I had parked in the shade but while we were hiking the sun changed position and we came back to a roasting vehicle which had been baking in the hot sun for hours! It was so hot that Jake did not want to go in the back of the truck and jumped out when I stopped to open the window for ventilation.

Harley and I discussed the dillema of needing to hike on the road with no shoulder. He was not crazy about the idea of me going out there on my own to check it out and walk it. But I really had to find where the rest of the trail went so we would know what we were doing and what we were getting into. We agreed that it would be best for me to go out there on a morning during the week when it would be less busy. However, as I discovered weekdays in the summer near a significant tourist attraction (the falls) are not any less busy it seems. Our hike is on a Sunday after labor day so hopefully it will be off season for most tourists and there will be less traffic to be concerned about

On Thursday, July 24th I went back out to this area and I was correct that the stairs I found lead to the continuation of the trail. Yeah! However, it is 2.25 miles between where the trail starts and stops again. Within that stretch we will be required to walk along rural roads with no shoulder which I am not too thrilled about (especially seeing that I am completely deaf and cannot hear cars coming up behind me at all). For this very reason, I need to walk against the traffic but there is no shoulder and I have to just trust that the oncoming car sees us.

Harley suggested having someone pick us up and drive us to the next part of the trail but I just cannot do that. It defeats the purpose of what I am doing. It just not seem right getting a ride in the middle of it. Marathoners don't get picked up in the middle of their run! Perhaps the county parks has a couple orange vests that they can lend us for the day.

At any rate, I will try to walk quickly through this 2.25 mile stretch and be ready to dive into the blackberry infested ditch if it appears as if the car heading my way does not see me!

Here is a map of the entire route from Duvall to Rattlesnake Lake in North Bend: http://www.duvallwa.gov/appsformspubs/SnoqValleyTrailMap.pdf

For SVT enthusiasts also curious where the trail picks up, this is what you must do:

• Travel south on Tokul road (after coming up the hill from the trail at the tunnel, take a right toward the falls).
• Before you actually get to the main road along the falls, take your first left on 61st or 66th street. (I cannot remember the numbers. Just take the first road on your left).
• Within a couple blocks, Snoqualmie Public works will be on your left and the road veers off in 2 different directions (kind of like a Y shape).
• Go straight and the road you are on will turn into Stearns road.
• Be careful and watch for huge dump trucks carrying gravel emerging from the Mill on your left (marked 5 miles road) and trucks entering from your right.
• Follow Stearns road for over a mile and a half passing a pond on your left with a pretty view of the 4000 foot Mt. Si in the backdrop.
• This road eventually changes into Mill Pond road but you do not know it until you reach the end (the road comes to a T).
• To your right will be a one lane bridge into town. Go left on Rening road.
• Within a quarter mile you will see a pull over area on your right with stairs ascending to a foot bridge.
• That is the rest of the trail! Enjoy! :o)