NF2 odyssey

BELIEVE!

2011-11-10T13:59:00.000-08:00

my trainer Merrie and I after I finished the Portland marathon for the NF Endurance team flexing our "Gold's Gym strength" in front of the Children's Tumor banner
Well yesterday marked 1 month since my full marathon success! Yes! I really did run a full marathon less than 5 months after a 5 hour brain surgery and completed the event in just under 5 hours!!!! I did it!!

And as a reward.....the purple calloused skin and blackened nail of my second big toe fell off while I was in the pool for aerobics! haha (little inside joke - a fellow athlete friend commented once "toenails are for sissies!") LOL We aren't kidding!

my red finisher shirt given after completeing the marathon and my blue participant event shirt given at the expo

my celebratory event roses tucked within a fall bouquet of my mom's - Portland is know as the "City of Roses"

I proved I hope what to be a very valid point.....You work hard, put your heart into something, exercise dedication and determination, and hold strong in your faith, MIRACLES CAN AND DO HAPPEN! If you tell yourself that you CAN'T do something you know what? You are right! Because you do not BELIEVE.

I could not have imagined running a marathon when I was well, before I lost my balance function and had perfect vision. I did not think it was possible and DEFINITELY would not have believed back then that someone could accomplish such a feat so soon after a brain surgery, having never ran a marathon before! YOU ARE STONGER THAN YOU THINK! Generally it does not come out until you are really put to the test.

How did it feel and how did it go for me?

Hmmn.....well actually now it is kind of a blur. Contribute that feeling to coming back and getting into constant things already which have included a giant grand finale hike, another charity endeavor, holiday fun, yet another charity event I am planning for, and coordinating a team. I am constant activity! But from what I can remember, it was my pretty ideal running climate allowing me to wear nothing but a pair of running capris and stripping down to the running singlet you see me wearing in the photo above.

my friend Jean from Portland who has organized the NF Endurance team for years - She collected my extra clothing layers on the course for me

First time running a full marathon in the fall I was unsure of my clothing layers. So I started with 2 long sleeve shirts and a thin pair of gloves that I ended up discarding within the first 2 miles to team support on the sidelines.

It is a GREAT feeling to start out an event with a team and additionally have someone with you to begin the race. Lucky for me I was able to begin the marathon with our wonderful team captain Janet who was running this event for the I think the 3rd year shooting for her best time. We stayed with each other at least for the first mile until I of course had to make my traditional port-o-potty stop. After the first few miles (you are kind of excited running in the pack), I aim to get in "the zone" and try to remember my pacing.

It was a real THRILL to spot volunteers with the Children's Tumor Foundation wearing neon yellow shirts and cheering me on from the sidelines. What a motivating boost! My family and husband were included in that group and also offered special energy nourishment I could not carry. I saw my sister ALL over the course which was pretty exciting too! I cannot even recall how many times I saw her.

Unlike running around a track which quickly grows dull, when you run in a marathon you get to sight see lots of the city and area in a way you could not by taking a car or bus and covering ground too far for walking. That definitely makes it quite interesting and gives one of feeling of exclusitivity.

When it starts to get tiring, it is a good incentive to keep pushing. Our big hill was such an example. Hills are not my forte so it is a great deal of mind over matter. While I was running and focusing on just making it to the stoplight in the distance which appeared to be the top, I saw a sign about needing an event number to cross the bridge. "BRIDGE?", I wondered with curiosity. Then a few moments later one of the most beautiful older bridges I have admired on every visit to Oregon came into view. My heart thumped with anticipation when I realized I would have the special opportunity to run across it admiring the intricate detail of it minty green medal and the expansive scenery of the Willamette River. As my eagerness built, my footsteps quickened driving me up the hill.

my asics running shoes with the orange tag which is the timing chip and activates when crossing the start and stops the time when crossing the finish

The weather was in the high 50s and started out as overcast (actually better for my vision) then began to drizzle sometime between mile 8 and 9. By then the light rain is pretty refreshing but would not be too cool if it was at the start.

I think the most difficult were miles 20 or 21 to the end. I had planned according to the event maps to have energy gels provided for us on the course. So I only brought myself 2 gels to carry in my hip belt and expected to grab 2 or 3 more at designated mileage posts as I needed. (Groan) There was an interpretation error. Whatever happened, the gel stations were not there! The only food energy were gummy bears and pretzels which I am unable to swallow while running. I tried the gummy bears at mile 7 because I could not see what the guy was handing me. I thought it was an energy gel as it was the same area it was SUPPOSED to be provided according to the map. Geez! I nearly choked on them and never did manage to swallow any. It was getting so exhausting to breathe while trying to chew them that I had to reach my finger into my mouth to pull out the ones stuck to my teeth. Blah! That was not a good experience and kind of strange. So going by the guidelines that you should have energy replacement every hour, I was definitely coming up short by the time I reached mile 20. I tried to extend my gas tank as long as possible by pouring sport drink down my throat at several of the stations and downing a can of FRS drink my husband brought me at mile 11. That way I could eat the second gel at mile 18 hopefully.

By 20 my mind was toying with me. Somewhere between 11 and 12 when I saw my husband, I told him I was going to need the extra gel I had in my backpack. Unfortunately because I was over optimistic in the course provisions, I forgot I left the extra gel at home!!!! I did not realize this until after the marathon. So while I was running, I had banked on my husband bringing an extra gel for me later in the course (certain stretches were closed to spectators).

When I reached 20, he and my mom weren't there! So the exhaustion and my mind were really playing me at that point. It had been a long time of just running alone without seeing someone I knew. Then I fretted that I would not see them and get the energy needed to make it to the end. When I finally saw them after mile 22, I was ready to suck down that gel BADLY! I almost cried and started screaming when he told me he could not find it. FORRUNATELY I was able to improvise just as I had in DC when I had to make do with whatever was available. I had bought one of those "stay awake" type of energy shots to have before the race which came in a 2 pack so I had one left over in my bag. Desperately I slammed it down and prayed I would not have a dang heart attack on my way to the finish. I only ever drank one once before on a long run and was not certain how safe it would be to my body to drink a 2nd.

When I did approach the finish I was pretty exhausted and must have looked like it too as 2 medic volunteers immediately grabbed me and supported me by the shoulders from each side. I was sort of dizzy so they had me drink 2 boxes of orange juice and stayed with me until they were finished and I assured them that I would be ok.

my loot after I had eaten a banana, cheese, and pizza

my celabratory seedling trees in the lower right corner of the photo

Wow! Were my legs stiff and sore!!!! I think after I drank some water I had to sit down CAREFULLY and stretch for at least a good 15 minutes. Maybe it was longer before I could finally stand up to walk around. In addition to the gold medal draped around my neck after crossing the finish line, the minature congratulatory roses, and my commenmorative seedling trees, there was LOTS of food booty to snatch up in the recovery area. So I brought myself to my feet and scoped out a spare box thrownout to carry all my loot.

Merrie, Pedro, and Harley

After emerging finally from collecting a good stash of food, I met my family, Merrie and Pedro, and friend Jean to snap some photos in front of the team banner. When ready to hobble to the car, Merrie and Pedro joined us back at my parents in Scappoose for a 40th congratulatory celebration when they also played the ingenious picture game and we finally enjoyed that ice cream cake I made my dad wait for! :)

Ok, So I am not looking so great. Give me a break I just finished running a marathon!

Congrats presents from Merrie & Pedro and sporting my finisher shirt and bling

Happy Halloween from the Cabin!

2011-11-01T02:51:00.000-07:00

Pre-event Fire Up

2011-10-28T14:59:00.000-07:00

October 8th, 2011 - Merrie and I at the Portland marathon expo displaying the participant tech shirt which I wore to the pasta dinner later on

October 8th, 2011 sis, me, and mom with my 40ths cake (40th birthday and 40th anniversary of the Portland marathon)

mom's "partyware" ensemble she made for me

When we arrived my parents home in Oregon after stopping to get my race packet at the Portland expo, I lucked out and had another 40th birthday celebration. I think I have been plenty spoiled with nearly a month of several continuous celebrations (first in MN with Cheryl my mother-in-law and Harley's grandma in September; then champagne toast with 2 other birthday friends; from my hike group down by Mt. Rainer; then with Harley at Mt. Rainier Paradise Lodge again ON my birthday; at my trainer's the same week; at my sister's the following week; and the culmination of the celebrations the weekend of the marathon in early October. Wow!

October 5, 2011 at Chef Michelle's
Menu - Coconut Pumpkin Curry Soup, Green Beans, and Thai Chicken Curry with Squash

Spud and Jazz there to celebrate with me!

Got so excited about Key Lime pie that forgot to put the candles on before cutting into it!

September 24th, 2011 at the Vieco household - my trainer Merrie, her husband Pedro, our gym mate and another September birthday buddy Randy Thompson, and Harley & I

Randy's birthday was on the 25th and mine on the 22nd of September. So we celebrated it together at Merrie's who is our trainer. Randy left shortly after to work for 6 months at McMurdo research base in Antarctica.

September 21, 2011 birthday TSNW hiking pals left to right: Denise who just summitted Kilimanjaro, me, and Kristina who summitted Mt. Adams and has trekked in the Himalayas

Kristina photographing a marmot on the rock in the distance as Bob comes up the trail

My beautiful Mt. Rainier

My favorite purple Lupine wildflower

alpine pond at the top of Spray Park

lush pink mountain Heather

September 22, 2011 - Paradise on Mt. Rainier Read the quote on the steps.

Paradise is LUXURIANT

overlooking Reflection Lakes

alpine pond surrounded by huckleberries

Harley reflecting over an alpine meadow

Reflection Lake

Paradise Inn Lodge

Mountain sunset

Harley relaxing after an afternoon hike

nice place for peace and contemplation in the upstairs deck of the lodge

Time to fly away! Beautiful hand painted lanterns hanging from the lodge ceilings

September 11, 2011 Apple Valley, MN - Cheryl, Harley, and Grandma

gift from grandma - my 40th socks :)

Haha! When we came home from the pasta dinner my dad was just DYING to dive into the ice cream cake we did not have time to eat beforehand.

When we got home after the dinner I had to get to bed quick as it was almost 9 pm and I had to get up at 4 am! So I told dad that we could not eat the cake until after I finished the marathon on Sunday. It gave me an extra incentive to keep running as I wanted some cake too! :)

Note: Why on earth would I have to wake so early? Argh! That is not at all normal for me and I am NOT a morning person like my dad. However, all marathon start times are really early for 2 purposes: firstly that is tradition as many events are in hotter climates and they want to start it during the cooler hours of the day.
Secondly, it takes much longer for walkers to complete a full marathon. So they start early so the course can be shut down in a reasonable amount of time and before evening approaches.
When you are on a team, the team generally meets 1 hour before the start time which is at 6 am. You meet for a photo and make sure everybody is there and knows where to go for their starting corales (runners or walkers start in different gates based on their estimated finish time and pace; the fastest runners get to cross the startline first).
Often, people from out of town stay at the hotel hosting the expo where you pick up your race packet with your timing chip and number. My parents live about a half hour outside of Portland. Thus I just stay there but that means I will have to leave about 45 minutes beforehand to ensure I get to the team meeting spot.

I was so groggy in the morning that I wore my underwear inside out and had no idea until I took my ice bath hours after the race!!!! LOL I was also very tired after the race and ran around with my finisher shirt on backwards! Dear Lord what a confused case I was!

The Adventures of Diverbeck

2011-10-22T23:40:00.000-07:00

crafty designer extraordinaire - my mom

The creative mastermind of the photo puzzle - my sister

The day before the marathon my mother and sister through me a very special 40th surprise birthday party.

One thing you must know, my sister and I LOVE to try to outwit each other! :-) We do this every year by creating the most ingenious clues for an easter egg scavenger hunt. Then we laugh histerically when one of us gets stumped trying to figure out the brain teaser the other was thinking. hehe

So what my sister did was create a collage of many of my escapades over the years and cleverly made a statement about each picture corresponding number on the photo. All the pictures were laid out onto the table and everyone had to walk around with a list describing each photo but without any numbers on the sheet. They had to determine which statement matched with a photo.

It was a brilliant game! And no I did not get them all correct but I did get the MOST correct. I almost figured them all out but there was a time crunch because we had to leave to get to the team pasta dinner. So she definitely stumped me!

Next to the photo of my mom is a photo album my sister put together for me of many spectacular things I have done over the last 6 years since recovering after the bad time I had following radiosurgery (which really shook my world as I knew it). It is one of the most loving gifts I have ever received! I know I live a lot of life but looking back at the collage she put together is pretty amazing. I really didn't know just HOW MUCH I have been living. Wow! It holds a very special place in my heart and I will treasure it for eternity. Someday when I am old and tired out, I will sit in a comfy chair and with each turn of the page I will be reminded of how I captured the most I could out of life. Then I can be pleased when the day comes that it will be time to rest. :)

The Adventure Lives On!

Final Stretch!

2011-10-05T13:43:00.000-07:00

Hey all! My 13 weeks of rookie marathon training runs is now complete!! :D It culminated yesterday morning before my weekly strength training workout with my trainer from the gym. The last bit of mileage called for a 3 mile run so I ran for 30 minutes to ensure it was covered.

"Keep Climbing" May 16, 2011
Sporting my "Keep Climbing" bracelet from cancer climber Sean Swarner and giving the thumbs up to making it through the 5 hour surgery and ready to rock recovery!
Thanks Sean and Teri! :D

First Hike - June 11th, 2011
Squak Mountain in Issaquah with Merrie

My friend Shantelle with me when I came out of OR and woke up in recovery

My friend Paul from the UK with his new bride Maddy, of just over a year

For anyone who has not figured it out from a couple previous posts, I took on the challenge of running my first marathon about mid-summer. The test was to see how I could do running a half marathon shortly after surgery with virtually almost no training. At the time of the half marathon, a good friend with NF2 who came down to Portland for my surgery had become very ill and was in and out of the hospital. I had not known how rapidly her condition was deteriorating and she admitted to me her worry about being able to still be here by Christmas for her children.
Wow! That was an unexpected shock! I wanted her to believe in herself that survivorship is definitely within grasp if you totally believe and put your heart into it - "Give it all you've got!". At the same time, another friend with NF2 from the UK was in and is in a similiar boat. These friends are so special to me that I wanted to do whatever was in my power to convince them to hang in there, have hope, believe, and try their hardest. What better way to walk your talk but then doing it yourself? Therefore, I had to do something great. I had to PROVE it by doing what most others would think impossible in my situation. Who runs their first marathon just a few months after having a brain surgery?
Thus, the whole motivation for pursuing this feat is purely inspired by wanting to inspire these friends as well as others to have hope and represent a charity advocating to help them. You can read more about it on my page at this link: http://www.active.com/donate/nfportland2011/RDufek2

I have a few people to thank for inspiring and encouraging me in this direction.

First of all, Phil Ershler you are amazing! Reading about all you went thru after your surgeries and about how fast you got back on the horse at the gym to get in gear for a 2nd Everest attempt with Susan was astounding! I really think your perseverence and your words of encouragement before my surgery provided me with the mental strength to believe these things were indeed possible. http://www.susanershler.com/book.html

Second, I want to thank my trainer Merrie Vieco who accompanied me on my first hike after coming home from the hospital while training for her first full marathon and doing a long run the day prior! I was totally amazed and not sure if I would be able to do the same but that is what I ended up doing this summer!
Merrie ran the June marathon in honor of me with the NF Endurance team. I wanted to be here for her to show my appreciation and support. So I consistently worked on recovery everyday after I got out of the hospital by walking an hour and a half daily so I could go home in time to see her in the event.
It just so happened that when we were hiking that day - perhaps it was the drugs still - that I got a wild idea to run in the marathon too by doing the half. I did well on our 5-7 mile hike the day after doing my first run so I figured I could at least shoot for a 6 mile run and maybe 8 miles. It was total spontanaity, adrenaline, and heart that I ended up running the entire 13.1 miles!
Throughout my entire training before and after surgery Merrie has been incredibly encouraging, pushing me to have faith in myself and do things that before I could not have imagined myself doing. It is all Merrie that I would have any confidence that I could train, shoot for, and accomplish a marathon, especially in less than 5 months from surgery!

Pedro and Merrie Veico June 25th, 2011

Harley and Pedro Veico who has also been incredibly supportive of me and Merrie; this is a celebration at the Veico house after the June Rock and Roll marathon.

Finally, my husband is my most devoted and supportive fan! He always believes in me and helps me to see perspective and keep on track. He totally encourages whatever I do and puts up with my moments of moodiness and crankiness that sometimes accompany the preparation for these events. LOL And he is a really good sport about my ravenous carb binges during training while he has to stick to a low carb diet. Sorry honey but I get so darn hungry following these long runs! It does not help matters that I have an insatieable sweet tooth! Love you lots and thanks for always being my biggest fan! :) xoxoxo <3So what happens now? While this is the final stretch to the pre-event resting phase which hopefully gets my body fresh and recovered enough for the long haul. That means I am done running until event day and that I don't do anything strenuous. So I will not be back at the gym until I return from Portland.Also, you work on sleep and trying to maintain good nutrition. Overall I am pretty good about intaking what I need but I have difficulty abstaining from sugar. I LOVE sweets! Although I passed on homemade chocolate chip cookies offered to me at the mountain summit friday, I have not been so strong willed at home here with chocolate. But at least I sort of cut down on it. It was getting out of hand and I was eating everything after my 2 highest mileage weeks.The sleep is another of my greatest challenges! URGH! I am not a morning workout person. Thank goodness my weekly group hikes forced me to get ready and out of the house at an earlier hour as I rarely accomplished early workout runs on my own. It is going to be really tough! I will be staying a half hour out of Portland so that means I have to get up even earlier! Our team meets at 6 am in Portland so I need to be up at like 4 or 4:30 in the morning! That means I need to hit the hay much earlier than I ever go to bed which is really hard for me. I have not done well at all disciplining myself for this. Hopefully over the next 3 nights I can make a change to try to help my body adjust. For a half marathon this has been doable but I am really worried about being able to have the energy to sustain twice the distance so early in the morning.DEFINITELY keep me in your prayers to pull this off! I have a hard time when my brain gets tired and my body physically then shuts down. Pray for alertness, stamina, endurance, perseverence, and a safe injury free run!Note: I think it is most important to let you know that I am a Christian and my faith and belief is the real power behind my accomplishments. I ask and I recieve. I do not believe I would have gotten this far, lived this long, have the things I have, or accomplished what I have done in life without recognition and respect for God. While others have motivated and inspired me, God provides the real tools. He is the one who provided me the instruments of inspiration in the first place. Before every run and hike, I pray and it does not stop there. I pray through the entire duration and then pray thanks afterward.
Just remember......"I can do all things through Christ who strengthens me! -Phillipians 4:13

P.S.- Thanks to my first trainer Paul at Gold's Gym NW for so bravely sharing his faith! He has a tatoo of the verse on his arm.

TNT (Team in Training program of the WA/Alaska Leukemia and Lymphoma Society) friend Gerb and I at my first half marathon event with the NF Endurance team at the Seattle Rock and Roll marathon in June 2010. My character and ideal of how I try to live my life is modeled after our good friend Skip Sand (my teammate in my first ever marathon walk in 2006) who passed away 2 years ago October from Leukemia. He had a very passionate spirit for humanity and exhibited exemplary committment to charitable causes and contributing to goodness in the world.

Our friend Skip Sand who walked an entire marathon in November 2006 AFTER he went through chemo while training. He was a man of remarkable strength with a heart of gold and faith.

Last Long Run!

2011-10-03T22:59:00.000-07:00

Quick note here before I need to hit the hay and get up early for my final run.

Well I made it through to the last official week of marathon training! Can you believe it? It is almost hard to believe myself and most especially hard to believe I had a major brain surgery just over 4 months ago. Wow!

So I hope to fill you in on more details of training as the week progresses but for now just wanted to shoot you an update that I have managed and survived to this point.

How my week went....
On Monday last week I started out with my usual short run that finally dropped down to 3 miles after running several weeks with 5 miles as my shortest run. What a nice treat. Then on Tuesday my second longest run for the week finally dropped to 6 miles from 8. :D Wednesday I made the smart more to forego the weekly power hike - the group did a very long 9 or 11 mile option with over 2000 feet of elevation gain.

Still, my heart ached for a nice hike on quickly dwindling sunny fall days good for hiking. So friday I opted for a 4 mile hike with just over 1000 feet of elevation gain to substitute for my second 3 mile run of the week. The dogs and I savored fresh air and majestic peaks of the mountain range on one of our favorite local treks close to home. I hope you will enjoy the photos and get a sample taste of why I love the NW so much.

Although the shorter days and drizzly cloudy weather is pushing my body into its own little mini hybernation schedule, I did eventually get myself out of the house for that last 8 mile run late Saturday afternoon. Interestingly even with the drastically lower running and hiking mileage, my body still feels sore and sluggish. Yet, I have still managed to maintain a 10 minute per mile pace throughout the entire run while feeling less energetic and slow. The nice thing about learning to run such high mileage is that an 8 miler can become of ease like a 5 or 6 and you can sustain performance better.

Okey doke! Time for bed. More tomorrow night! :D Sleep tight!

Rattlesnake Lake before we started up

Who you looking at?

Time to go!....Here we come mommy!

We're going up there!

The "Rock" - actually there are many of these and even some bigger!

Dreamy Enchanting Forest

On our way UP! This is the first peak of the lake from the trail.

The "BIG" local mountain I like to climb - Mt Si, 8 miles and about 3700 to 3800 feet elevation gain; I have not done this one this year yet!

Katie

Jake

With my "kids" - Jake is too busy licking my neck to be concerned with having his photo taken.

From the summit:
overlooking the Mt Si and the North Bend valley

Lake Kachess and east further into the Cascade Pass

SE of the summit

Rattlesnake Lake as seen from the top

Hike finale

Family - September 10, 2010 Apple Valley, MN

2011-09-27T17:22:00.000-07:00

Wedding of 1st cousin Courtnie De Grand to Mike Higgins

Auntie Barb (dad's sister) looking on as the wedding party walk down the isle

1st cousin Amelia (Barb's daughter - the tiny girl behind the minister) ready to fulfill her duty as the flower girl

1st cousin Nate, Amelia's brother, peaking out from behind the bench in the front row

The groom, the bride's brother cousin Brice (far left with aviator sunglasses), and wedding party look upon with wonder as the bride approaches

bride Countnie escorted by my aunt and uncle (dad's brother) Al and Sharilyin De Grand

3 generations - 2nd cousin Elaine, aunt Diane, Uncle Wayne De Grand (dad's brother), 1st cousin Noel De Grand, 1st cousin Jennifer De Grand (the mommy), 2nd cousin Miles, Andy (the daddy)

Uncle Jason, cousin Amelia, and Aunt Barb watch intently as the couple profess their vows

Mike utters promises of love to Courtnie the gushing bride

Mom and Dad gaze on in the joy of nostalgia

The Kiss

Introduction of the newly married happy couple

The Send Off

The best flavor cheesecake at our table - My kind of wedding! ;-)

Flowers fromt the heart! :)

Our traveling clan - mom, Harley, me, Michelle, and dad

Doing DC

2011-09-06T22:54:00.000-07:00

Thursday night before the storm

Our nation's capital on a very lovely friday evening

Dad and I in front of the White House early on Saturday - We got drenched!!!

The Washington Monument as seen from the front of the White House

Saturday night as the hurricane touched down - It became really misty and you could not longer see the Pontomac River in either direction

Same view Monday morning

Well I guess it is about high time I give you an update! I have been busy traveling, running, and hiking.

About a week ago dad and I traveled to Washington DC for my 5th checkup at the National Institutes of Health. Like a good little trainee, I brought my running shoes with me so I could do a 5 mile run the Wednesday evening we arrived our hotel in Bethesda, Maryland. To my great luck and unplanned, there happened to be a running trail just a few blocks from the hotel.

Wow! hehe TONS of elite runners! Good thing they were going the opposite direction. I think maybe they were running clubs or teams from the University and nearby schools.

It felt great to get off the plane and subway to get out for a good run after sitting so long which is kind of difficult for me. I do not prefer hot weather but fortunately at the time I went out the sun was mostly going down and it had cooled to a tolerable temperature. Boy am I glad my sister bought that matching running skirt and bra for Christmas that I did not think I would be brave enough to wear in public! I could care less what this nearly 40 year old body looks like in the heat if it means being comfortable. And THAT I have done alot of lately! Comfort outweighs looks. ;-)

So the plan was to take 3 days off of running for travel (one day for medical appointments and 2 for sight seeing and flying back home. My 16 mile run I would do the day after our return which be a Sunday (only 1 day later than my regular running schedule). Seemed like a good plan until I got a message on my text phone from Harley after 9 pm on a Thursday night that our flight was cancelled. Apparently the hurricane that was beat down North Carolina was estimated to arrive Washington DC Saturday evening when we were scheduled to fly. All flights were shut down and the soonest flight available was only Monday night. There goes my running plan.

Sunday morning we tried to get on any of the flights going out but they were all full. As it turned out, we only recieved a tropical storm in DC with lots of rain but nothing as devestating as the media made it out to be. The next 2 days were gorgeous! However, by the time it was determined we could not get on any flights sunday, it was approaching the hottest hour of the day which does not make a good recipe for a run for this cool west coast runner.

That left me Monday morning before we flew out. If I didn't get out Monday, there was no chance of doing the long run for the week in my training schedule. As it was, I would already be jumping 2 days later into the following week. Thus, I scramed together and improvised some provisions to try to get me prepped for a long run in hot weather. All there was near our hotel was a Rite-Aide in the underground mall - no FRS drink, GU energy gel, hydration belt, or english muffin with peanut butter and banana.

Hunting around the store I at least found some gatorade, 1 liter of bottled water to carry (gratefully that a lady walker recommended to me when I was scoping out the length of the nearby trail), a marathon bar, and some tiny bottle of 6 hour energy shot. Thank God I brought my running attire and body glide along!

Ironically however, the trail just outside our hotel was the exact same trail I had always seen on the shuttle ride from the airport to the NIH. The trail followed the road and Pontomac river through beautiful scenery and past views of the captital, WA monument, Jefferson Memorial, and some other scuplture. I always marveled and fantasized at how great it would be to walk or run along the trail. But alas, I never stayed in DC up to this point where it would be a possibility. I had NO IDEA prior to arriving that this same trail would be just a couple blocks from where we would be staying.

Rising early and stretching in time to get out on the trail before it became too hot, I downed a last granola bar I had brought with me and found a fruit and nut bar in my dad's bag to try to get me some breakfast energy. I also had some pizza pretzel combos I tried quickly snorting down yet I could not eat too many as they were hard to swallow. Since I had no belt to carry the energy shot or water, I had to gulp down the shot before the run. The 1 liter bottle I had to carry in my hands continually switching off every few minutes until my wrist grew tired.

Although I did not have the "ideal" things, I think I threw together a pretty good mix so unexpectedly. The weather was hotter than I am used to but boy was that a cool run! I probably got through as long of a run as I had because I was so stoked going on an exploration I love sauntering along new paths and seeing new places. With little time left, I got to search around more places in DC than I have ever had the time or opportunity to!

Our hotel was near the airport in Crystal Springs. The trail followed the Pontomac River from the city past the airport and towards DC. I passed all the monuments and crossed a bridge in the into the old town part of DC descending down to a trail along a dried up canal. After running along the canal for awhile the trail came back up to a cobblestone and brick walkways leading me back past the lovely historic buildings.

When I crossed back over the bridge again heading back the way I had come, I veered off onto some island. There the terrain changed from urban running to off road. I went from crushed gravel and compact ground to boardwalk and then to a hiking trail sort of path until ran the entire island.

After the island I veered off another side trail leading me to Jefferson Island through a nice pine tree park and past a little boat marina where many of the boats were still on their trailers in the parking lot. From there I headed into the heart of the Federal Triangle past the Jefferson memorial and a block in front of the Washington Memorial.

In front of the Washington Monument is one of the only public restrooms so that was a good place for me to stop off and drink the rest of my water my hands were cramping from carrying. With 20 minutes left and the temperature rising, I was a little light headed and dizzy. So I rested for a minute more and guzzled some more water from the fountain before headig back to complete the 3 hour excursion

With Healing, New Paths Can Be Forged

2011-08-20T15:44:00.000-07:00

This post is dedicated to my fellow NF2 friend and runner Olivia who is struggling with some of the same feelings and issues I encountered after radiosurgery in 2004. Don't give up and don't give in!

For those who have been with me over the long haul, you know most of the story that brought me to this chapter of my life. For those who don't, let me brief you on how I arrived at training to run a full marathon - something I could have never seen myself doing 7 years ago.

Question??

Was I always a runner?

Well, not exactly. I guess it depends on how you define what it means to be a runner. While I did run on the cross country team and long distance events for track my senior year in high school, my running after that point consisted of occassional running over the years to try to stay in shape. (And by that I mean a weak attempt as I grew older to try canceling out that freshman 15+ that tacked on to me and seemed to ride along for the next 15 years!). Beyond some of my undergrad college years, running became maybe an annual 5k event. I have no idea if I ever ran 10K distance up until 2009 when my fellow cancer survivor buddy and team in training teammate told me when he was in the hospital that he believed I could do it. So I did!

But let's back track to summer 2004 after I finished graduate school. I recieved the news in the spring that one of the tumors in my head got really damn big fast. Fearful that I would not live through a brain surgery or even worse....become physically and maybe even mentally screwed up, I opted to take an avenue that I expected to be a kinder and easier approach. WRONG! It is a long story but let's just say I got sick for a long time which included loss and impairment of many of my "normal" ways of functioning. I was pretty devastated and spent a long time being lost and walking around like a zombie. I felt like my soul was dead and I was just a shell of a person walking. My soul ached when I could not be hiking in the mountains anymore, could no longer have the stability to scuba dive, and roller blading was just plain over.

In my sadness I walked myself into recovery. Thankfully I had my dogs to get me through my heartache. In addition to adding joy to my life, our walks gave me a good excuse to spend an IMMENSE amount of quality time with them and feel I was still serving a purpose.

Anyhow, in the photos are my new shoes which are actually only my 2nd pair of marathon running shoes! I have worn the same pair through 4 half marathons since I started running them in 2009. For me, making a major purchase takes me a long time. I am too indecisive and worried if it will be the right choice. Happily, these shoes have gotten me comfortably at least 48 miles so far!

I snapped these photos in the Carnation agricultural valley where I started walking the dogs back in spring 2003 when we moved out to the country. Later I found the 32 mile railroad grade trail about a mile or 2 down the road which I eventually came to walk in an entire day following this whole rift in my life. It is also the place where I began to make a transition back to running.

As I mentioned, during my first recovery I spent much of my time walking my dogs daily. At one point I even had to walk with a walking stick! While I was out there taking time to rediscover myself, within a couple years I was inspired to become "inspirational". Hence began my shift into becoming a charity athlete. After losing my balance function, my very first running event was 3 miles around a high school track in a "Relay for Life" event for cancer May of 2006. After completing the last lap around the track I totally collapsed and could not stand up! I kept pulling myself up on a lawn chair and would continually come crashing down. The paramedics rushed over but fortunately with some hydration, after 10-15 minutes on the ground I was able to rise to my feet.

To train myself to even be able to run 3 miles, I had to run with my walking stick. Within 10-15 minutes of a run when I started back into running, I would become greatly disoriented with my legs quivering like jello and my eyesight flying all over the place. I would imagine the inability to properly walk after finishing would be comparable to what a person with cerebral palsy experiences. At least that is how I felt stumbling around deperately trying to walk straight during a cool down.

Many people without any real serious medical conditions or limitations remark to me how it is amazing I can run so far but comment how they could not possibly run beyond a 5k. You have NO IDEA what you are capable of! Yet neither did I once.

Running is not my favorite thing to do either. I do it because it has been a gift and a talent granted to me - a tool with which I can help others. Granted I am nowhere NEAR great runners but I CAN do it. I may be slow but hey! At least I am out there giving it my best shot and doing it for a greater purpose. When it hurts, I think of my fellow patients who are in wheelchairs or missing legs. I bet they would be damn estatic to have this ability! I know that must be how they feel as just going through losing my balance gave me a deep sorrowful longing to have uninhibited ability to do even lunges at the gym and all these fantastic things which were once so simple.

So why waste it?

Speaking of that, I need to get out here and shoot for that 16 mile run now that I have had 24 hours for my body to rest following 3 days of mountain hiking.

Life is grand! Look for it Olivia! Love ya! :)

Please help encourage my path by supporting my run! http://www.active.com/donate/nfportland2011/RDufek2

10 years of unconditional love

2011-08-17T19:14:00.000-07:00

I suppose the pictures are self explanatory but if not, we were overjoyed to celebrate the 10th birthday of our dogs this weekend (they are brother and sister).

While you might find it comical or ridiculous that we went all out to have our own little "dog" birthday party in our little family, well that is just it......They ARE our family and our kids. As a matter of fact as I am sure all the parents and moms out there think of their grown children as their babies still, I am no different. hehe On ocassion I will shout out "puppies" and they come running!

Let me tell you the full story though. 6 years after gratefully experiencing cancer remission I was diagnosed with brain tumors. It started out as hearing loss and sadly the slow decline of hearing was not the only problem. My brain is LOADED! There are so many tumors that it has actually been quoted in some MRI reports "too numerous to count".

So that is a pretty heavy issue. On top of that, the disorder which causes my brain tumors is genetic. Not only is my health a consideration but also the health and future of an unborn child. So the consensus was not to become birth parents. Yet that had not sunk in my mind in the beginning.

Within the first couple years my hearing declined rather rapidly as far as hearing loss goes. I was warned that it was a very high if not most certain probability that I would become deaf (entirely with no sound). For most of my life I have been pretty social and talkative.

Harley wondered how this aspect of my personality would be affected. He was saddened that I may find life very lonely (and yes it does take quite a bit of an adjustment). So when my 30th birthday rolled around, he brought these babes into my life that brought me lots of joy as well as motivation for recoveries.

When you are a patient, a pet can give you so much love and fill a big gapping hole which has puntured your heart. When I got them and told my elderly neighbor stricken with cancer for the third time, he chuckled and said "Oh boy! That's just what you need!" I was not quite sure I completely understood the meaning of his words but now I do. He spent his final months sitting happily in the sun stroking his furry feline friend sitting on his lap with a big grin. That is pure joy...to be given unconditional attention and love no matter your disposition, your health, or even your presentation.

As the years went by and I lost all my hearing, went through many falls while losing my balance function and screamed my head off, many tears and fits of rage, days when I either could not get up from the daybed or go outside, days of puking my guts out and more crying, the frustrations of enduring recoveries through 1 radiosurgery and 3 brain surgeries, my babies have always been there to heal my heart. When I have been hurt either physically or emotionally, immediately they have come to the rescue licking my tears away until they turns into outburts of laughter.

So with this 10 year celebration, we say THANK YOU for giving me life and bringing us such incredible joy to overcome the heartbreaks this disorder has tested my family and I with.

Not Missing a Beat!

2011-08-02T16:08:00.000-07:00

Ollalie Lake

Photos by Team Survivor NW member Diane Bowlin

Alpine Tiger Lily

Hike Leader Elaine, Sarah and Me at one of the many stream crossings

I REALLY love hiking and do everything in my power to not miss anymore of my weekly hiking escapades with my cancer survivor friends. HEHE I make a point to try to schedule my medical appointments on days of the week which do not conflict with our Wednesday hike time. So I request appointments either at the end of the week or beginning so I am either back in time for a hike or leave the next day. For this last trip I made darn sure I went on the hike Wednesday, left on the train for Portland Thursday morning, and then took the train back to Seattle Tuesday afternoon following my morning appointment so I could be back on the trail again the next morning! :D

The exception is that I could not coordinate my NIH visit around my group hike day. They have me leaving early Wednesday morning August 24th for travel all day and then appointments on the 25th. :( grumble.....So I will miss at least one more group hike this season. Hopefully it will not be at too cool of a trail or at least something closeby that I can make up on my own time. (I do not drive too far anymore.)

I also have to figure this in to my marathon training schedule while ALSO doing strength training and working with a trainer once a week. I run 4 days a week with increasing mileage per week and as the week unfolds. So far I am keeping up but I drastically had to cut back on my strength training either cutting down the amount of days I go or greatly decreasing the amount of weight I lift or both. That is ok because what is important right now is that I have the energy and stamina to take on longer and longer runs. I had a difficult time last week with training immediately after a 4 mile run. My nutrition was off so I was so tired and felt weak having difficulty focusing during my session with Merrie.

This week so far I am only hiking one day because I am catching up on all the work I slacked off on during "playtime". Tomorrow I plan to be back out there again.

I forgot my camera in someone's car but cancer pal Diane Bowlin was nice to share a few photos with me of our Pratt Lake Basin hike last week.

NF2 Buds Unite

2011-08-02T15:37:00.000-07:00

A week ago I had to make another trip to Portland for my 3rd facial rehabilitation appointment with a therapist to
A) See if my face has improved any
B) See if I have been doing the exercises correctly and issue additional exercises and
C) Monitor if there is unwanted movement in the opposite side of my face which will inhibit function on the full paralyzed side.

I don't know how much I should really talk about it because I don't want to come off wrong as "the glass half empty" kind of gal and to detract my focus.

I will say that although not monumental, I did gain the tiniest little bit of dimpling at the corner of my mouth when I try to smile.

In any case, it was a great excuse to travel down to Oregon to spend quality time with my parents and also meet up with my friend Vaughn who I have not seen but briefly one afternoon during my recovery in June. Prior to my surgery, we had not seen each other since we met in May 2009 when my sister and I stopped off on our way back from the Eugene marathon.

Vaughn has NF2 like me and even had a recent brain surgery with the same surgeon in January. As a result of the latest surgery, Vaughn is new to complete deafness. We are a rare bunch so it is always great when NF2 friends can get together to share and swap stories, especially when there are similiarities that others may not understand.

Being the true pal he is, Vaughn traveled into the city to meet us at the zoo when my train rolled into town. What a great sport! I arrived in the afternoon and the zoo closed at 6 pm not leaving us a HUGE amount of time to see everything. Of course you have my mom "miss speedy walker" and then me "the marathon runner". LOL So we certainly gave Vaughn quite a workout while we covered it all! We had a fabulous time! Here are a couple snapshots of us.

Also, Vaughn came to my appointment with us on my last day in town. Afterward, we went to the rose garden to visit for an hour before my train departed back to Seattle.

Sneak Peak

2011-07-28T19:18:00.000-07:00

I was up in the mountains again yesterday morning and then last night Harley and I tried out some full face dive masks in the pool at a Seattle dive shop with wonderful instructor Dominic. As evidenced in a couple photos from June when we stopped by one of the shops to try a mask on, I was equally as pleased with the mask under the water. It rocked and I did not want to come up! :D

The reason for giving the full face mask a test drive is not due to eagerness to have a new (AND EXPENSIVE toy). With most of my face now paralyzed, the ability to hold and keep a regulator in my mouth underwater is a big issue. As it was when we took a dive a couple weeks before my surgery, the partial paralysis on the right side of my face caused me to blow the regulator out of my mouth ever so often especially when turning my head one direction. No biggie as I am pretty comfortable under the water and have many dives under my belt over several years. What I noticed is that I really depended on the fully functioning left side of my face to bite down and use the facial muscles to keep the reg in my mouth.

Now however, the left side barely moves and I have recently noticed a major loss of muscle tone in both the cheek and chin. I cannot even keep my mouth closed to eat so how on earth will it work to keep a regulator in and water out???? Hence Harley came up with the idea of seeing if a full face mask could work. When they first became available years ago I was not too eager to ever get one for fear of it flooding but I absolutely loved it! So we will see what we can do when the winter comes around. For now I can keep myself plenty occupied by training for the Portland Marathon which will be October 9th and fully taking advantage of hike season.

As part of my visit in Oregon, I enjoyed a nice day on Mt. Hood Sunday hiking with my dad. I just got back to Seattle Tuesday night via the amtrak train. For years (since 2007), I have admired the mountain from the hospital after every surgery. Finally I had the opportunity to go there and set foot on the mountain which has beckoned me. Here are a couple photos from our Mt. Hood adventure

Dad makes such a cute photo model! ;-)

It's A Happy Anniversary Day!

2011-07-16T17:33:00.000-07:00

Today not only marks our 11th wedding anniversary but is also exactly 2 months since my 3rd brain surgery.

I AM ALIVE AND WELL!

To celebrate we are heading down to Mt rainier to spend the night at the Paradise Inn which is the highest altitude hotel in the state. After a relaxing evening and a comfort dinner in the beautiful log lodge, we will hopefully wake up to a stunning view of her majesty to enjoy a great day of hiking at altitude. Maybe we will even catch a glorious sunset as the sun has peeped through the clouds now. :)

This month I have been occupying myself with catching up the hike season, working on getting into full gear again, and commencing with my next big training endeavor which will require lots of discipline and fine-tuning a healthy life balance for optimum energy. So far this month I have spent 6 days of hiking, 4 days of training runs starting last week - 1 mile of a 5 mile walk, 30 minutes, 50 minutes, and 6.1 miles yesterday; returned to water aerobics this week, and started training with kettle balls again which is quite a workout. After working with Merrie on the kettle balls I am very sore for the next couple days and have taken Thursdays off as a either complete rest day or easy walk day with the dogs.

There have been some very beautiful days in the mountains. I am on the iPad right now so no pictures today. I will try to post a few photos early next week before I leave to Portland again on Thursday. I am returning for facial and eye appointments.

Stay tune for a report of my hike adventures! Enjoy your weekend!

Deafie has a FUNTASTIC 4th! :D

2011-07-08T13:00:00.000-07:00

So how does a deaf person enjoy a parade with music, dancers including horses, and loud fireworks? It's all visual entertainment baby! ;-)

I gotta admit I was a LITTLE apprehensive to go worried that I might get bored but MOST OF ALL, anxious that it could possibly interupt intended hiking plans or even cancel them on such a glorious day. Harley REALLY wanted to go to the nearby rural Carnation parade and the 4th only happens ONCE a year whereas hiking is all summer and there will be plenty of other nice days. Therefore I agreed to a compromise.

We were late for the parade and immediately became distracted by the classic car show in the bank parking lot. I had forgotten how cool and enjoyable it is to see all the cars. I really love and admire how owners take such immaculate care of their trophy cars and add such unique detail. I am a REALLY big appreciator of detail so all the uniqueness is right up my alley.

Before deafness I had always paid particular attention to detail which became even more enhanced after I lost all my hearing.

While busy happily snapped photos to forever capture the art of antique vehicles, Harley heard music up the street of the parade still hsppening and wanted to catch the tail end of it. So we ventured to the middle of town in front of the Mexican restaurant where I was pleasantly surprised to find a cow boy bouncing gracefully upon his big black beauty dancing to the serande of a small marachi band. Yes! By beauty I mean a big black stallion of a horse with fancily long haired feet! How entertaining! It did not matter if I could not hear a thing! The horse was marvelous with keeping in step and ever so often did a little back step kick like a lephercaun kicking his feet up in the air. I was so intrigued by its cleverness! Seriously, I could have watched that for hours!

Meanwhile other cow boys, some with Mexican outfits, sat on their horses in the background waiting for the center of attention to finish so they could take turns dancing. One horse was particularly excited and kept eagerily bouncing his head up and down while the other horse was dancing. Haha! I called that one "The head banging horse"! ;-)

On the way to the focus of everyone's attention we passed a group of ladies dressed up in colorful Mexican skirts. Darn! I was disappointed to miss them (so I thought). Then as we were watching the horses doing their jig, the ladies ran out in the street waving their flowing dresses as they spun in circles. What a treat! I was thrilled!

After they were all finished we returned to the car show where they had some of my favorite cars on display......stingray corvettes and MUSTANGS! :)

Following the show we headed for our Poo Poo Point hike to see the paragliders and finished in time to journey back home for a quick shower and food before hitting the Lake Union fireworks in Seattle. Because my husband is a "rockstar" agent, he just sold a SWEET condo on the 24th floor of the Cosmopolitan in Seattle that his client welcomed us to enjoy the fireworks show from.

Isn't life GRAND!

The advantage of complete deafness ;-)

2011-07-07T18:41:00.000-07:00

LOL Check out the people in the background of these photos! Notice how most of them are plugging their ears with their fingers. This is at the "Hot Rods and Harleys" show on 4th of July in our small neighboring town of Carnation, WA.

Harley was totally tickled and took an IPhone video of me cluelessly walking around getting photos of this hotrod at all angles without a care in the world while the people surrounding the green machine were cringing due to the loud exhaust. I could feel the low rumble vibrate entertainly through my body but had no idea it caused all the hearings great discomfort.

How fun to be able to walk around so closely to a roaring (maybe screaming) machine to admire it without any bother what so ever!

Back In Action!

2011-07-05T22:27:00.000-07:00

I am already back to my beloved passion for hiking!

Before the half marathon I got in 3 hikes in June (2 with significant elevation gain and more distance requiring a jaunt of over 2 hours.

The last weekend I was at my parent's before coming home (June 4th), dad and I did some scenic tourist hiking to the marvelous waterfalls outside of Portland. It was a good practice adventure for gearing me up to rejoin my friends in the cancer survivor hiking group weekly. Many of the trails were short and some paved, but they had steep inclines and narrowing of the trail which were great for challenging my brain to coordinate with my balance and vision.

The first Saturday back, my trainer Merrie and I hit the trail together for the first time since our Kilimanjaro trek in October. There are not spectacular views on the Squak Mt hike we traversed but the NW woods is so lovely and pretty! Further, for most of the trail the terrain is wide and pretty easy which made it a good hike for me to start on post-surgery when I was still combating with abnormal vision.

The Wednesday following, I went out to an easy (but quite a workout with over 2000 ft elevation gain) on the neighboring Tiger mountain. For not hiking for a month and running 16.5 miles over the previous 5 days, I did amazingly well and was not tired out or out of shape. YES!:D

With the half marathon approaching on the 25th of June and my legs then insanely sore from doing a week of marine core rampage (21 miles ran and 2 hikes of 9-11 miles combined with over 3000 feet of elevation gain), I felt it best to cool my jets for 2 weeks from running or hiking - 1 week to rest up for the event and 1 week of recovery afterward. So NOW it is time to get back to it! ;-)

Summer has finally really hit here with sunny days and temps in the 70s and 80s. Fortunately those days Harley had off! :) So we hit the other trails on Tiger Mountain which is the closest mountains to hike locally (saving time). Sunday we ventured on the back side of the mountain (Dwight's Way) which he had never been on before. Unless someone shows you, you would not really know the trail is there. I learned of it from my hike group and I missed the hike with them this season as I was down in Oregon recovering.

Yesterday we went to another shorter hike on the front side of the mountain that I also missed during my time away. The day was brilliant with barely a cloud in the sky and an awesome view of Rainier in full detail. The trail meanders up to the point where Harley, my sister, and I paraglided off the mountain to celebrate my 15 years of cancer remission a few years ago. With such a fantastic day, there were LOTS of gliders floating in the air! I counted up to 19 before we entered the dark woods to begin our ascent.

Tomorrow I will be doing the first strenous and long hike this season with the hiking group to Annette Lake deeper and further east into the Cascades. There are lots of talus rock fields to cross so it will take a great deal of concentration for me throughout the hike. Gotta get off the computer so that I can get my stuff ready and to bed as I need to wake early.

Happy July and summer! :)

BELIEVE! 13.1 miles in 2 hours 15 minutes 51 seconds

2011-06-28T23:09:00.000-07:00

Our spectator and supportive husbands Harley and Pedro and Merrie and I at their home Saturday evening where we celebrated our accomplishments with a bbq :)

Merrie and I wearing our NF Endurance jerseys and our "Rock and Roll Bling" finishers medals - Merrie finished the full marathon in 4 hours 5 minutes; her first in MANY years

Writing I wore on my legs during the event:
"40 days AFTER brain surgery"
"Still Strong"
"Never Give Up" - our NF2 motto
"4 Shantelle" - my run dedicated to my friend Shantelle struggling with NF2 currently

Miracles never cease to exist! By the grace of God with only 1 week of real training which means running, and exactly 40 days following brain surgery, I ran an entire half marathon on Saturday in the Seattle Rock and Roll event. Not only did I run 13.1 miles but I did it only 10 minutes and 10 seconds slower than my time for the same course last year when I had at least 10 weeks of prior training. It is truely a miracle no doubt!

When I say to you that I was really unprepared for this event, I am not kidding!!! In January I was thinking about doing this event but slacked off on starting the training. If you follow the 10 week marathon rookie site, I had leeway to start training the second to last week of April at the LATEST. However, I like to throw in 2-4 extra weeks in the training to account for any possible downtime I might have to take off to heal injuries. That would have brought the start of my training to exactly right after the Big Climb skyscraper race I do every year which I now lead a big team in. The event was on March 20th so earlier in the year I was focusing on team recruitment and a different type of training for the racing up the tower which is more of a sprint type of stamina rather than endurance.

During the first week of March I was hit with the bomb that my tumor/s operated on in 2009 grew back in less than a year and a half. Utterly shocked and in disbelief, I tried to put it out of my head to focus on the upcoming big climb to which our team had outstanding success both in fundraising for the LLS and athletic acheievement. After the event was over, I had to put off training and try to figure out what the heck I was going to do.

In the past, it has taken me YEARS to decide on a surgery. I am like the student in class wanting to be the very last person to walk up and give my speech. I want every last second possible to prepare. I tend to be the same way in my approach to surgeries. Yet, I was getting the impression across the board that it would not be a good idea to wait too long this time. Not wanting to wait until AFTER the marathon and miss my hike season in recovery, I made a first ever ballsy decision to get the surgery in May. That meant the marathon would definitely be out of the question. I made this decision sometime in April but to tell you the truth what really pushed me is that I did not want to miss out on my hiking. LOL Otherwise I would have tried to put it off for longer. ;-) I was a little bit disappointed that I would not be running to represent the NF Endurance charity team but I also had the option to run for the team in another state in the fall. Hiking however is a small window and with NF2, you never know how long the luxury of taking in this pasttime joy is going to last.

So I ruled the marahon out and did not train. I just maintained running 2-3 times a week for 3 to 4 miles at a time to keep in shape for the upcoming surgery and also to hopefully bounce back fast so I could get back to hiking as soon as possible after the surgry.

You must always thnk positive before a surgery but in truth it is pretty much out of your hands. One can get in the best physical shape and get the mind and spirit in the right place but at a certain point it is totally out of our hands. Not being 100% certain of the outcome, I did not register and the event was sold out after I made it through the surgery.

However, I did really want to make it back home by the marathon so that I could be here for my trainer who was running the full in honor of me and to support the team. So although my leg really hurt still from the surgery, I walked everyday to move my recovery along. A fellow patient once gave me the advice that as soon as you get out of that hospital bed you get moving! You walk and then you walk some more.

By the time I came home, I contemplated that first week if I could walk the half marathon (I did walk the Seattle November half marathon 39 days after my 2nd surgery so it seemed only natural that I should find a way to do this one). By the end of the week I decided to take a little run to see how it felt. Surprisingly, I ran 2 trail miles in 20 minutes and walked the 2 miles back! Excitedly, I shared my desire to walk/run the half marathon while hiking with my trainer the following day. Sadly though, I did not think I would be able to get registered at such a late date. But alas, as always Merrie has all the answers and had a solution for me. Thank you Pedro for passing off your spot to me! :)

So I decided on June 11th that I was going to walk the half marathon and maybe run possibly 4-6 miles of it. Ok....I fantasized about being able to run maybe even 8 miles. At the time, I thought I would have 3 weeks of training but was not yet aware of how soon the date was arriving. Monday I threw myself into training by going for a 6.5 mile run. Realizing now that I grossly miscaculated and only had 1 real week left to train (the last week is a rest week), I concluded I was going to have to do my longest run the following day!!!! My leg was hurting and I was not even sure I would be able to run 6 again! Amazingly I pushed out 8 in 1 hour 20 minutes on a paved trail! Woohoo! Friday although painful, I managed to run another 4.5 on the trails in the watershed preserve. After that running was OVER until event day. I tried running about 20 feet Sunday afternoon and winced in pain from the tightened inflamed tendon behind my knee of the leg that has bothered me since surgery.

Seriously, I started having reservations from the day throughout the rest of the week if I would even be able to finish WALKING the event. The wee hours of Thursday night/Friday morning did not boost my confidence either as the tendon behind the knee started spasming in pain jolting me from my sleep. Friday evening at the team pasta dinner, the captain announced to all in attendance that I was planning to RUN the entire half marathon! Embarassingly I thought. "Oh No! I don't even know if I will be able to walk the whole thing to finish!". Yet after she said that, I think I made it up in my mind that I was going to do the best I could and if that meant I could run the whole thing, then so be it! Also, I wanted to do my very best and finish to show my friends Shantelle and Paul that they can survive and get better if they really put their minds to it like I did for this race.

Women of Character

2011-06-23T21:11:00.000-07:00

"Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, vision cleared, ambition inspired and success achieved." - Helen Keller

I am pictured here with my friend Shantelle who came down to my surgery in Portland and I posted a photo of her with her son back in May. Shantelle also has NF2. Right now she is experiencing a turbulent time with her medical situation, way more concerning than my dang face.

Over the past year one of her tumors grew to an immense size causing her the side effect of swallowing problems. As a result, she lost 40 lbs in a short period of time sapping her strength for surgery. Therefore, her doctor had her get a feeding tube put in to help her gain the needed weight. Unfortunately the darn thing became infected so she had to go to the emergency room to have a "pic" line put in her arm that will deliver strong antibiotics straight to her bloodsteam. She also had to spend a couple nights at Swedish Hospital in Seattle until the medical team had her on her way to healing.

The picture was taken late yesterday afternoon as she was being happily discharged. It gets pretty boring lying in a hospital bed for such a long time.

Shantelle has a long way to go so please keep her and her 4 children who need her in your prayers for healing, strength, courage, and a promising treatment.

P.S. - I am doing quite well and my physical fitness recovery has been nothing short of miraculous. As a matter of fact, I am going to do the Seattle rock and roll half marathon this Saturday. I will run as far as I can (Hopefully half of it - 6 or 7 miles) and then walk the remainder. My leg is still sore and the pain shifts between the inner thigh, outer quad,the tendon behind the knee attaching my calf to my hamstring on the outer part of the leg, my IT band extending into the glute, and the entire skin of the leg to the bottom of my foot which increases with sensitivity with long durations of running or hiking.

Last week I ran a total of 19 miles and hiked 2100 feet which would rightfully make me sore if I have not been doing that for a month! So this week I am resting. I went for a fast 2 hour walk monday night but all other days it has been under an hour with 1 day off. Hopefully that will do the trick to get me ready to get through the event with tolerable pain.

Happy Father's Day!

2011-06-19T10:11:00.000-07:00

"You may be ill physically, but as long as your mental state is strong, it most certainly will exert a positive influence on your body. There may be no better remedy than hope."

- John Walsh, father of Patrick Walsh who lost his battle to an NF related cancer

Connections of the hearts
Next week it will be one year that our son Patrick left this earth and went to heaven. He fought a tough battle with NF related cancer right to the last day. I will always remember the day before he died in a very special way. The day before he died was... Father’s Day 2010, he fought the pain and got out of his bed to go and take some pictures of us and our next door neighbor JR. Patrick had helped his friend JR rebuild a classic car until he got sick and couldn’t do it anymore. JR finished the car and wanted Patrick to see it completed. With the help of Ronnie another close and good friend of Patrick we managed to get Patrick next door for the pictures. Patrick look at his friend JR as the picture was being taken and said, “You know I’m not going to be around much longer.” Most of us that heard that were trying to hold back tears. To me this was a very special Father’s Day gift. I learned how to be strong and keep going even when faced with challenges. We must challenge the circumstances in our life and steadily keep moving forward. That day I awoke a sense in me that I put aside for a long time, that being attitude. Now I try to keep it positive, that way it not only elevates my own aurora but also that of those who are in my life and have contact with me. As much pain as Patrick was in that day, he tried to be positive and wore that best smile that he could. His apparent happiness to see the car and his family and friends gathered around quickly became the happiness of all there. Never avoid what you must face in life, just reach out from where you stand and there will be a hand there to help you to the next step. That is what happened that day. Patrick reached out for help to get to the car and at that time even though in denial I think he reached out and prepared us for the next step, which was his leaving us here on earth the next day. I found this past year a new connection with my family, my wife Galdys and Daughter Jennifer, my Mom and Dad and my brother and his family, also my friends and coworkers and Facebook friends who have been there for us through these trying times. It’s a connection that I can’t express in words I just know it’s there and it comes from the heart. It keeps me strong and doesn’t allow my weak side to dominate, if I let it do so it will surely mean defeat. As Patrick said, “Keep up the fight.” and “Enjoy life that’s all that matters.” I know he is wherever I am, and I thank you all for being where you are.
By: John Walsh

John's story is a beautiful tribute to the perseverence of his son, the loving relationship of a father, and an example of how to make the most of living by deciding to.

I often cross this path too and am forced to make that choice of deciding how I am going to respond to something. Situations challenge the way I perceive the circumstance taunting me to give in to misery but I fight back with joy.

I have to say that my first week out of the hospital was that kind of week, a broken face trying to snuff out my spirit and continual pain in the muscle and skin of my entire leg.

Yet I was very excited for the opportunity to be at my parent's home in the middle of the week to share my dad's birthday with him to help him celebrate. It would not have happened otherwise. It was so much fun to be there for this moment!

For those who do not know, my dad as well as my grandpa, his dad, have been an source of strength for me encouraging me to press on.

When I was a kid in grade school, I used to race cross country skiing in the Upper Penninsula State Winter Games. I was so excited to have the honor to represent my school at the games the first time when I was in 5th grade.

Race day was pretty hectic and nerve racking with tons of spectator parents, families, friends, and a crowd of athletes. For this first race, they had everyone start in a pack by the shooting of a gun. At the startline another skier fell onto my skiies making me immovable as the pack nearly drifted out of sight. I was wildly frustrated and disappointed. I imagine back then I felt like poking the person to a pulp with my ski pole to get them off. Yet, that is a trait my father taught me not to do. So I patiently but anxiously awaited for the skier to get to a stand freeing me.

By the time we became untangled, the pack was long gone and my heart was in tears. How on earth was I supposed to have a chance at coming in with one of the fastest times let alone catching up to the pack? Desperately I tried going as fast as my out of shape body would take me to try to rejoin the other racers.

Although I tried my hardest, I just could not keep up and my lungs burned with fire as my body as well as my spirit lost strength. Finally it was just too much and I realized that I could not have the thrill of victory that I wanted. So my young mind chose to quit as tears rolled down my cheeks in defeat.

My dad was there encouraging me to press on but my spirit was too embarassed and broken. Quitting was a horrible feeling. No matter what place I was in, my dad was there to support me and at the time I did not realize that just finishing was what was important.

Although discouraging, it was a very good life lesson which compelled me to never quit again and I think that is probably why I am still alive and keep ticking.

In addition to the strength of character, my dad and grandpa shared with me their passion and sense of appreciation for the natural wonders of the world. I cannot tell you how much this has brought joy to my life and continues to getting me through multiple life trials.

Thank you Dad! I love you! :)

Bringing me Hope

2011-06-18T21:38:00.001-07:00

Posting out of sequence so go to the following link: http://diverbeck.blogspot.com/2011/06/swimming-to-bring-me-hope.html

Intermission - Deception Pass, WA

2011-06-11T23:37:00.000-07:00

Our pre-surgery adventure to Deception Pass connecting the mainland of WA state to the northern tip of Whidbey Island after our tulip field tour on May 1st

The One Eyed Leopard

2011-06-10T22:45:00.000-07:00

Thursday morning before the eye surgery

Wednesday night we had to tape my eye shut at bedtime because the eyelid would not fully close allowing it to partially drift open when unconscious. As a result, my eye would be sore in the morning and also in the daytime even with gel drops inserted in my eye. Therefore, when the ENT doctor came to visit me on Wednesday, he mentioned that he was considering the eyelid weight implant for me which MAY be permanant. We do not know yet if my facial paralysis will heal and to what degree.

Last friday was my followup appointment with Dr. Stephen of the OHSU facial plastics clinic to give a look at how the eyelid healing is progressing 2 weeks post surgery. It looked good and I have taken great care with it. I think for a week I taped an eye patch over my eye at bed so that I would not unconsciously rub my eye either scratching the cornea with the weight or dislodging it all together. But I got tired of the tape sticking to my cheek and forehead the next day and reverted back to wearing an eye mask at night which worked well. (just the eyemask with gel drops inserted in my eyes....NOT the tape)

The appointment was very enlightening. Dr. Stephen is a GREAT doctor!!!! He said that if the facial nerve DOES come back and I find that the weight is unnecessary, then they will go ahead and remove it as over time it can drag down my eyelid.

I am never thrilled about another surgery, but that one I WILL TAKE WITH PLEASURE! If a removal became necessary, than that would probably mean my face would come back too!

Focus on the GOOD

2011-06-09T15:00:00.000-07:00

"Good things come to those who wait."

I am using a great deal of symbolism here in my latest posts if you have not already caught on. I am a very DEEP person and I think that could be a part of what has gotten me through the roller coaster of life traumas I have been riding.

I opened my email yesterday to find an advertisement to a charity shopping newsletter I get with this very fitting quote I need at the moment.

The pictures are from our quest to find peace before the surgery by visiting the tulip fields up north on May 1st (the very tailend of the festival but was actually timing of spectacular bloom because it was cold longer this year). We also journeyed with the dogs to Deception Pass where a very tall bridge connects the main land mass to Whidbey island on the far northern point over a very narrow straight between the main waterway. For me I really needed the peaceful beauty of the tulips and Harley the water (which I like too and is a bonus!).

Yesterday my quote book read:

"As God's workmanship, we deserve to be treated, and to treat ourselves, with affection and affirmation, regardless of our appearance or performance."

- Mary Ann Mayo

For Your Eyes Only

2011-06-09T13:30:00.000-07:00

Top photo: Dr. Stephen of the Facial Plastic clinic numbing my eyelid
Middle photos: On the left Dr. Furr, with the cool hat with lobsters on it that I liked, and Dr. Stephen performing surgery on my eyelid while a resident/student observes; it is a teaching hospital
What Dr. Stephen is holding with a pair of tweezers type tool is the literal gold weight that was implanted in my eyelid to help it to close.

Bottom photo: me after the procedure with OX or maybe it was before because I look pretty good; so yeah that must be before the procedure
By the way, OX, that green alien looking thing is the comforting and cuddly pillow doll Merrie gave me. That is why a photo of me with it is posted on my last blog post.

What is Beauty?

2011-06-06T14:28:00.000-07:00

Rebecca with friend and trainer Merrie Vieco, Rebecca & Harley's dogs Katie & Jake who stayed with her in Oregon during recovery, and Hunter, Rebecca's parent's dog ready to take her first walk outside and on hills 3 days after a major brain surgery
This photo was taken on the afternoon of Thursday, May 19th when she was discharged from the hospital following a smaller surgery by the OHSU facial plastics team to insert a gold weight in her upper left eyelid on the side paralyzed from the surgery. The weight helps Rebecca to close her eyelid and blink at a delayed interval in order to retain moisture. Keeping the eye from drying out is so that the cornea does not become scarred which would cause one to lose vision.

Photos by Michelle De Grand

Quote for May 19th in the daily affirmation book "For a Woman's Heart, Thoughts by Women for Women" given to me by my mother-in-law

The best and most beautiful things in the world cannot be seen or even touched. They must be felt with the heart.

- Helen Keller
OX, my Ugly Doll - his description

OX
What kind of name is OX? No, not like the animal OX, as in HUG and KISS! How can he hug you with such short arms? OX uses his ears! He's not a very good listener, but he puts his ears to good use in many other ways! OX is great at magic, and his best trick is turning your stuff into his stuff. His best buddy Wedgehead calls that stealing, but OX just wants to borrow things from you for a few hundred years. He promises to put everything back when he's done. What he wants to steal most are kisses, whether they're in the chocolate variety or just plain, and he promises to be your friend if you would lend him a hand, or an ear...or like Two Dollars!
UGLYDOLL OX IS APPROXIMATELY 12" TALL FOR ALL AGES* Winner 2006 Toy Of The Year Award by Toy Industry Association * Oppenheim Best Toy Award

http://www.shop.uglydolls.com/products/productdetail/OX/part_number=10091/322.0.1.1.0.0.0.0.0?

Click the link to visit the official Uglydoll site and read about the story from the home page that started it all. Ugly Doll means "special and unique".

Special Note About My Posts

2011-06-05T11:34:00.000-07:00

Top: Mt. Hood in Oregon

Bottom: St. Helens in Washington state, both as seen from OHSU hospital in Portland, Oregon

Dear readers,

Thanks for following along! I wanted to let you know that there is a little gap in my posting last week with many posts dated from Wednesday. I had followup appointments in Portland Thursday and Friday and knew that those were going to be all day adventures leaving me with no time or too tapped out to blog when I came home. Saturday I was also gone all day with my dad on a tourist hiking exploration of the waterfalls outside Portland and then attended the Portland Starlight parade last night with my parents. I was so tired when we came home that I fell asleep in the bathtub for an hour until mom came in to wake me up!

Planning for my post-surgery escapades, I started many posts and saved as drafts which I could just publish later on the days I had activities I was busy with. However, without realizing it, when I did publish the posts, the date revcrted back to Wednesday as if they were old posts yet they were new.
So please scroll down to all the posts dated Wednesday June 1st to make sure you did not miss anything. All posts have a photo with them and I thanked some special people who made this surgery and the outcome a little happier. In case you have not noticed from the pictures, I have suffered facial paralysis on the good side of my face which has been emotionally hard to accept and I will talk more about it in detail on a future post. As such, I have GREATLY appreciated the beauty, cheer, and cards people have added to my life along with the PRAYERS WHICH I AM STILL IN NEED OF.

Enjoy reading! I will continue to post regularly with more photos and stories of my recovery experience and pre-surgery preparation when I return home this week.

With gratitude,
Rebecca

Thank You My Brother and Densie for the Energizer Flowers!

2011-06-05T11:07:00.000-07:00

In addition to my beautiful sister, I have a wonderful brother down in San Diego. We arranged the surgery in a very short amount of time (discovering the tumor growth in March and then making a decision and scheduling the surgery for May in April). Hence, he was unable to be here but he and his wife surprised me with a beautiful and very LONG lasting floral arrangement. I have enjoyed the flowers the entire time I have been here at my parent's home in Oregon.

I am going home to Washington state today and mom and I were just commenting at the breakfast table this morning about how the arrangement is finally starting to peter out. Take a gander at the flowers in the bouquet to remember when you want to send some cheer to someone. The purple and yellow sprays go on forever and you can make a dried arrangement out of them with the small red mum type flowers and the yellow spray roses. SURPRISINGLY, this particular red daisy lasted a very long time! And the astromelia lilies (yellow but come in an array of other colors) are long lasting too.

Thanks Scott and Denise! I enjoyed their festive and bright cheer every morning and at every meal everyday! :)

Thank you Aunt Willie, Kris, and Grandma & Grandpa

2011-06-01T17:36:00.000-07:00

The Kindness of Strangers

2011-06-01T17:33:00.001-07:00

Left: Harley in the lower lobby talking with Jaine and Jessica visiting from New York.

Center: Jessica, Me, my new fish "Hope, and Jaine in my hospital room Wednesday night, along with Merrie, Harley, my mom, and sister not pictured. hehe it was a full room that night AND my friend Vaughn also visited earlier)

So this is the story.....Wednesday I mentioned I was out and about roaming the 2 floors below where you can go outside. At first I was with Harley and my sister. At some point Harley disappeared and I cannot remember exactly when. After I tired of being outside and figured I better head back to the room so the staff did not think I went AWOL, my sister and I headed back to the room, But after spending 2 days IN a hospital room, I had little desire to get back in bed or my chair and hang out there. This hospital is amazing and I was longing to hang out in my PJS sitting in the comfy lounge chairs looking out toward the view of the Willamette River valley below with Mt. Hood in the backdrop. What a rare and wonderful opportunity!

So I excitedly grabbed my Planet Ocean book and another book. While there my dad showed up and we were all sitting there reading. Oddly I was not engaged in the ocean book and gave it to my dad to puruse through. Then Harley appeared with my surprise...Merrie! She had a bag of surprises for me so we went back up to the room. My dad was looking at the ocean book so I left him down there with Harley who was on his cellphone.

At some point my dad got up and left leaving the ocean book on the coffee table there for any other patient or visitor to pick up. Maybe he did not realize it was mine? So while Harley was talking he overheard some girls commenting about the ocean pictures which caught his attention. In the midst of his phone conversation he started to think to himself "Hey that sounds like my wife's book!" He turned to look and of course it was my beloved ocean book (I have had a facination with marine biology since I was a little girl and as expected, became a scuba diver and studied it to follow my passion. At home Planet Ocean and Coral Reef DVDS are part of my personal collection.)

Being his extroverted self, Harley struck up a conversation with the young ladies and told them all about me and why we were there. Very moved by my story and interests, they felt compelled to surprise me with a pet fish that they brought to my room later that evening! How incredibly sweet! I am still floored that complete strangers visiting from the other side of the country were so thoughtful and went out of their way to bring me cheer and something very meaningful.

THANK YOU THANK YOU THANK YOU! is all I can say. I am extremely touched and will remember your kindness and hope I can have a heart like yours and one day pass it on.

"Hope" is doing very well and has been on the window sill next to the breakfast table where I see him and say hello when I feed him every morning. :)

Swimming to bring me Hope

2011-06-01T17:26:00.000-07:00

"Hope fills our hearts with joy, even when our hearts are breaking."
"It is hope that gives us an invincible spirit."

"Beauty does not come with creams and lotions. God can give us beauty, but whether that beauty remains is determined by our thoughts and deeds. " - Delores Del Rio

I confess to you that I first had a very difficult time with morale when I got out of the hospital. I have not really discussed it yet. I will tell you that my attitude which may surprise you was very ugly - DEFINITELY not a spirit of beauty. Therefore, I really wrestled with whether I should write about it.

When I first became aware of my face, it burned me something raw. I was filled with anger and felt I had been betrayed. Thinking back I do not recall ever really blaming God for my cancer or the NF2 and the struggles I have had with it. But for some reason I did this time and asked over and over again "WHY?".

To this day I still have difficulty coming to terms with my face and sometimes feel the pain of sorrow. I try to push it back and recognize it as the face of evil trying to steal the joy from my life. So I slap the evil in the face and keep on living with a laugh that I will be victorious over it. One of my focuses very important to me is charity and working very hard to bring awareness of this disorder and help people in need where I am able.

Recovery physically has been pretty marvelous and miraculous! This week despite the pain in my leg still, I ran about 19 miles, hiked 2100 feet of elevation gain, returned to the gym, and walked my dogs too! My focus it to participate in the Seattle Rock and Roll half marathon next Saturday in support and to cheer on the NF endurance team for morale and thank them for their dedication to helping those with NF. I feel my role there is important and plan to run/ walk the half marathon with the intent to run half of the distance. It will be a presurgery record for sure!

Back to Hope.....

Hope is the name of the fishy Jaine and Jessica brought me at the hospital. He brings me Hope and that is why I named him as such.

When I had cancer at the age of 21, I was away from home in college. I was afraid to sleep at night or in my room (they say it is the fear of dying alone). So what I would do is sleep on the couch in our apartment and watch my beautiful angle fish swimming around. It relaxed me and eventurally put me to sleep.

Fish have always had a calming effect on me. It is one of the reasons I am a diver. At times I have been so at peace and relaxed while diving that my breathing became very deep and I could almost go to sleep!

Hope is so great and is doing wonderfully fitting into our family. In fact I think the dogs might be just a little jealous when they here me come down in the morning and cheerfully talk to Hope. He gets really excited and flutters his fins. For real! My husband was so amazed! He sits on the counter in the kitchen so he is able to watch all the action and I see him all day. Like the dogs, he brings me so much joy and hope.

Thanks again ladies! You have no idea how great your inner beauty and compassion is to me!

Thank you to my special friends Erin and Carli! :)

2011-06-01T17:22:00.001-07:00

If was awesome!!!
Thursday before I was able to be discharged from the hospital, I had to have a much less complicated outpatient eye surgery to implant a gold weight into my eyelid. That is one of the reasons why I am wearing an eye path....to protect my eye. Plus it kind of looked bad and I also wore it often to read. I still do as the double vision has been lingering.

In the morning after breakfast and before my procedure, this lovely purple orchid arrived from my fellow lymphoma survivor friend Carli and her mom. Erin who is a former teammate of mine from my Team in Training time with the Leukemia and Lymphoma Society (of which I am a supporter and continue to be a participant and team captain in the largest tower climb in seattle and the NW). Erin and I walked the full Seattle marathon as an LLS fundraiser in fall 2006. During that time, her daughter Carli, just shy of 6 years old, was our honored patient for the team and had been going through chemo for 2 years to treat non Hodgkin's lymphoma (I had Hodgkin's Lymphoma that was easier and more responsive to treatment).

Carli is now 10 and I am both flattered and honored she remembers me!

Thanks ladies! The beautiful orchid was such a gorgeous surprise! I admire it everyday! I never had an orchid before but LOVE to visit Volunteer Park conservatory and take in the scents and beauty of all the orchids. It has been a long standing tradition for me to go there yearly to find peace and feel better in the face of all this medical stuff. When I had my MRIs in Seattle I used to go there to visit the conservatory afterward to sit there and find a meditative peace as all this can be quite draining. As a matter of fact when dealing with the stress and worry of facing another surgery only a couple months ago, I made a visit there to help find my peace.

Thanks for giving me "peace" to bring home with me! :)

Thank You for the Cheer friends and famiily!

2011-06-01T16:52:00.000-07:00

LOVE the rotating art at OHSU

2011-06-01T10:37:00.000-07:00

While not the most gorgeous of paintings. this wall size piece caught my eye because of the vibrant color, it is large, and there is definitely meaning in it. I discovered it with my sister when I was venturing around on my walk to go outside. At that stage I still very much had distorted vision so that is why I really like the largeness which helps me pick up on the detail. The more I gazed at this painting, the more I was drawn in and details started to pop out at me.

By the way, that is one of the things I love about scuba diving. If you hover in front of a niche of life long enough, all these little creatures you did not notice at first start to appear before you. HAHA I think photographers love diving with me because I get excited about finding things and will point them out to people or start swimming around to get people to come over. I am not too shabby at my species identification either as my background is in teaching and science with special interest in marine biology.

Getting back to the painting........Despite the rugged tom boyishness I often exhibit, ever since I was a little girl I have enjoyed tea parties. As a matter of fact, I was enthralled by the diversity of hats the lady guests wore to the royal wedding (and yes I was incredibly excited to watch the wedding taking place while working out on the cardio machine at the gym!). The hats intrigued me so much that I began to dream of holding a special tea party where we all wear the most creative hats that we can find or make as a future fundraiser. It can grow and develop but immediately my vision was to have a little gathering on the deck of our home this summer to celebrate my accomplishment of surviving the surgery - An "I made it!" party.

Reflecting on my thought after the second surgery, I came to the conclusion that any kind of surgery is a REALLY big deal to face and go through. We celebrate all these happy moments, birthdays, weddings, babies, graduations, new homes, new jobs but I think that making it through a major medical trauma is an incredible achievement one should rightfully celebrate which should not just be a passing sigh of relief. Like "Wow! Holy crap you made it!" similar to conquering a HUGE mountain such as Everest.

Don't worry all! You do not need to bring gifts. I have been spoiled enough for this surgery. If you REALLY feel compelled to give something, I will happily accept donations to our charity the "HELP STOP NF" foundation with the goal to help improve the lives of those living with NF2 through awareness, education, and supporting NF2 research. For those nearby, just come have a relaxing afternoon tea time with me enjoying life in the sun with butterflies and birds flying around surrounded by a natural style NW landscape. My mother-in-law gave me a BEAUTIFUL tea set painted with lovely butterflies that I am craving to use for a special occasion!

The deck, made of a special wood called IPE as the prior deck was rotting with holes in it, is one of the first improvements my husband made to our home back in 2004. He designed and built it himself with the help of a carpenter coworker of his at the time, Craig, and Craig's brother Brett, Harley also expanded it to extend fully across the front of the house whereas there were only shaky wooden stairs going up to the front door before.

Originally the plan was that I was going to help with the building process which I DID help with the HUGE tearing down and transplantation of 17 large trees and shrubs beforehand in May 2004. However, I had radiosurgery (my first treatment) in July 2004 and became so ill that I questioned whether or not I was going to live .It crossed my mind of whether I could get by without a home nurse to help me. It was a scary time. When Craig was over helping Harley one day, I remember getting mad because I was frustrated the house was getting terribly messy. I was too sick to keep up. Between working 12 hour rotating shifts of either 6 am to 6 pm or 6 pm to 6 am AND spending all his spare moments working on our enormous deck, Harley had no extra time or energy to do the cleaning that I was unable to do because standing up made me too dizzy or cause me to collapse. Angrily I shouted out "I need help. I think I am dying here!"

Fortunately I pulled through and THANK GOD my husband lovingly made this deck just in time! It is one of the first adaptations he has made to our home to accommodate my continually changing life with NF2. The stairs are a wonderful and safe single set with no turns and about the best handrails I have seen on a deck which I have used numerous times over the years. (for photos of the deck you can check back in the archives in May 2009 when we had a birthday party for my dad.) As the months progressed post radiosurgery my balance became worsened to the degree the old stairs and deck would have been dangerous causing me to seriously hurt myself. Further, having a large and safe outdoor space offered me a wonderful space outside to recover in peace with the dogs enjoying the summer sun, trees swaying in the breeze, puffy clouds overhead, butterflies fluttering by, and flowers blooming in pots on the deck which were easy for me to take care of.

After standing there looking deeper into this painting like an optical illusion, fun little details telling the story of the painting began to jump out. It was so interesting to me that I had to take pictures to capture its essence to keep in my memory. I hope you enjoy them too! :)

Out And About Wed May 18th

2011-05-31T21:27:00.000-07:00

Images taken from Rebecca's camera 2 days after surgery when she was able to wander outside to the outdoor garden and wellness center 2 floors below

The view from the room

2011-05-30T23:10:00.000-07:00

Day 2 after surgery and I am up!

2011-05-30T22:41:00.000-07:00

These are a couple photos taken shortly after I was able to get dressed Wednesday morning after the nurse took out my catheter. As soon as that thing is out, I take that awful gown off, happily put on a pair of underwear, and get into some of my cozy PJs! :D

The top photo is a gorgeous flower arrangment that was delivered from my husband's business coach at Kinder Reese. We never have met but they did a fabulous job picking out flowers and colors I LOVE! Thank you so much! I was so surprised!

In the photo below, my NF2 friend in London and his wife Maddy sent me this sweet personalize get well card. Thank you for your cheer all the way on the other side of the globe!

What is sticking out of my neck? GROAN Needles and I are not friends. It is like my veins have intelligence and at any visual cue my brain recieves of a needle or knowledge of one coming, they gol into serious hiding. There is an exact science to finding a usable vein on me and even if everything is followed to a T, there is still no guarantee we are going to get one to agree with us. Normally the requirement is heating pads on the veins to bring them out, sometimes I need to pump my arm, the tiniest of neeedles we can get away with must be used (often the butterfly), and the best luck is in the top of my hands as the veins in my arms tend to roll.

So anyhow, in ICU it turned into a big ordeal and my bruises in my battered arms and remnants of several needle pokes are finally starting to fade. For I do not know how long, several nurses came and an ultrasound machine was used to try to find my veins!!! That was a first. They had difficulty at my last surgery too so what they did was give me a direct IV in my neck. I am not sure why but the nurses were not trained to do that and if I understood correctly, I had to wait for a paramedic to arrive and place an IV in an artery in my neck. So that is what that tube is doing hanging down from my hair on my right.

Fresh Out of ICU

2011-05-30T21:53:00.000-07:00

Here is how I look coming out of ICU before I am able to put on my own clothes The gown is the traditional ass flashing kind. When they had me put in on in prep it was HUGE and I had to wrap it around me in order not to go streaking through the hall to quick go to the bathroom before they hooked me up to the IV pole;

For the first time, they had me wear this ridiculous "skull cap" they referred to it as which would never stay on my head and annoying just kept hanging around my neck like a noose. Unlike the other 2 surgeries, they had some gauze padding on the incision. So I believe this so called "skull cap" was supposed to keep the gauze in place on the wound. For the first 24 hours I was lying flat on my back with only the pillow area of the bed elevated at least at a 30 degree angle because it is important to keep the head above the heart after a brain surgery. So although the cap kept falling off, the padding was not going anywhere. Mom and I pulled it up onto my head as best we could to take a picture.

The photo of my legs on the left is a picture of the compression socks they have me wear after the surgery. Due to the amount of time someone has to be lying in bed, there is concern of developing blood clots in the legs. I for one happen to suffer from charlie horse cramps in my calves on occassion and need to regulate my potassium intake and sometimes take supplements when running high mileage when training for half marathons. Plus I am a really active person so lying for such a long time is difficult. The compression socks basically act as if someone is massaging your calves by squeezing and releasing them. They are powered by the electricity connected to the bed just like plugging in a heating blanket. Therefore, after the catheter is out, I need to have someone take them on and off me each time I need to go to the bathroom. Mom or my sister always to this for me.

Oh......the other things-

The gloves are just the manicure kind that I wear at first for 2 reasons.

1) I have something called Raynard's Syndrome where if my hands get too cold they loose blood circulation. Oddly for the first time I DID have an attack while in ICU. I think I had to lie on my hands to get the cirulation back. So that must be why I am wearing them. I think an attack was triggered shortly before I was moved to my regular room. Being that it can be cold in medical facilities sometimes, the gloves are an essential that I packed in my surgery bag just like my eye drops I MUST have with me.

2) I have a dry skin problem on my hands. These gloves are actually designed to wear at night after you apply lotion to keep in the moisture and make your skin soft. Surgery day I was not allowed to wear any lotion but I could afterward. So that is another reason why I am wearing them.

What's with the pirate patch? Am I making a halloween joke?

No. Actuially this is another essential. It is very common after brain surgery to have double vision. I did not know that for my first surgery and so I tried to improvise by wearing an eye mask for sleeping over one of my eyes so I could read and see.

My "Keep Climbing" bracelet given to me by one of my heros, fellow Hodgkin's Lymphoma survivor and Everest mountain climber Sean Swarner is gracing my right wrist (the hand that I am waving). In surgery prep the staff was so nice and allowed me to keep it in for my surgery which meant a great deal to me. hehe I sort of planned that and was hoping they would let me keep it on. :)

My Lovely Ladies Thought of EVERYTHING!

2011-05-29T21:29:00.001-07:00

Top Photo - Mom at Dad's birthday dinner May 26th

Middle Photo - Merrie at the hospital balcony on the 9th floor (my room was on the 10th)

Bottom Photo - My sister Michelle outside before Merrie's visit May 18th

I want to take a moment to acknowledge the incredible contributions to my care that my mother, sister, and friend and trainer Merrie Vieco have made to make this surgery experience more comfortable for me. Yes, sorry if I will be bragging a little bit. I confess they have totally pampered and spoiled me but my pupose in telling you is not to gloat. Firstly, I want them to know how much I really do appreciate them and secondly I think it is important to tell you so that family and friends of other patients get an idea of the sort of things they can do to feel helpful.

Let's start off with Easter. That was leading up to my surgery by only a few weeks. As a family we eelebrate that holiday and fully partake in traditional festivities. So there is the egg decorating, hunting, and of course the easter baskets. I asked to not have candy in mine this year so my mother and sister included goodies that I could use and some of them applied to the upcoming surgery experience and my planned longer stay in Oregon for recovery at my parent's home.

Off the bat, one of the first goodies in the Easter basket from my sister was a gorgeous seaside puzzle of a painting by Christian Lassen (the Hawaii surfer artist) that I would never find the time at home to piece together but would be a perfect brain mapping and repair project to work on in the weeks of my recovery at home. Get this......I even have my own special glass puzzle table in my mom's craft room that she found at Good Will during my visit to attend the pre-op appt at the end of April. So while my mom works at her desk making cards, I can be working on my puzzle in the same room with her.

Another goodie sis had in my basket was an inspirational bookmark telling me to "Believe". Aside from just believing I was going to live and get througth the surgery, I have had some discouraging complications which really require hope and a positive attitude to persevere. At my celebration of life party, both mom and sis gave me some books so I definitely found use for the bookmark to go with them.

In the Easter basket from mom I got a nice brush which I left down here for my return which is working great for coming through my wet hair with ease and not hurting the incision area. The stick of deoderant was nice too and I actually needed some as the stick I brought ran out. More hair bands to keep my hair out of my eyes which can cause me to get vertigo have been nice too.

My family unexpectedly showered me with gifts when we celebrated my life the day before surgery. I have VERY dry skin and taking the medicine can dry it out too. Mom brought me some special miracle skin cream that I lotioned up with well the day before surgery and afterward as the day of surgery you can wear NOTHING - no lotion, perfume, or even deoderant.

I also have trouble with dry mouth and dry lips. Mom bought me a special bottle of dry mouth flouride rinse which I have used daily. I was pretty lucky this time but the first time I vomited continuously and was not able to brush my teeth immediately. So we wanted to be sure we could remedy that problem should it happen again. Mom also got me a little travel size ziplock pouch of trial size toiltries and sis also got me a ziplock pouch of special burt's bees trial size products with special lip balm and dry skin cream.

Passing the time and relaxing your inner psyche......
It is common with brain surgery to have vision problems. Therefore, I do not do any watching tv much and I am limited on the amount of reading I can do. While in the hospital either my patience can only tolerate reading short phrases or I can only look at pictures because of double vision and difficulty reading letters in words. Mom gave me a book of whitty quotes and a picture relaxation gift book of puppy photos while sis gave me a beautiful nature photography book of the state of Washington.

In the hospital, I had brought with me a huge Planet Ocean photography book my sister gave me one Christmas and a thick coffee table book of National Geographic's best photography that Merrie and Pedro actually gave me for Christmas. So I was well stocked!!! Part of my recovery is that I need to sleep better. So my instructions are not to read any really heavy thinking material before bed. I alternate looking at all these books! They are a perfect way for me to unwind and just empty my mind of thoughts and just let my visual system take ovcr focusing on beauty and wonder.

By the way, the dog book was great to browse through when I got to take my first bath! Sis is just too good to me! A few days after I was home she mailed me a package of goodies from Bath and Body Works of the new scent, Country Chic, that I was complimenting her on when she was wearing the perfume at the beach house. So just when it is about time that I can take a bath and use my own soap, I get a bottle of bubble bath in the new scent with perfume and lotion to match in the mail! Too sweet, eh?!

Cheering up
At my party the day before, mom and sis gave me flowers and balloons to later bring to my hospital room once out of ICU. Michelle and DJ also had a flower arrangement of sunny roses and daisy's delivered to the room. And mom being the card making diva expert, has made me a collection of beautiful cards that I have adorning the windowsills. She gives me a card everyday. I will be sure to share some pictures of her lovely creations.

Little bit of info on Merrie.........
She is my trainer at Gold's gym who has gone WAY above and beyond running a half marathon with me and even traveling all the way to Africa to accompany me on a climb of the mountain Kilimanjaro. Although I began training before my first surgery, the training was really intended to give me an extra edge with my performance as a charity athlete and to help with overcoming my balance challenges. We had NO IDEA I was going to be having surgery again so soon and how beneficial this training would be at making me as strong as I could be to tolerate surgery, persevere, shorten recovery, make my recovery easier, and be able to bounce back quickly.

At my last training session the week we left for Oregon, Merrie gave me a gift certificate for a massage with Yoko at the gym spa who is AMAZING! What an incredibly great idea to get a relaxing massage before surgery that I never thought of! I have never done that before and if ever again, I will DEFINITELY do so! It was perfect and in fact, I think I could use one again when I get back.

Merrie and I work a lot on balance, core, leg strength, and upper body strength. We have been training together for a year and I am incredibly amazed at how strong I have been for this surgery, that I did not become weakened at all, and how soon I have been up walking and for long periods of time ON HILLS daily so soon after a major brain surgery. It is astounding! I am wearing my parents out because they do not want me walking alone and thus either need to go with me. hehe

Wednesday (only 2 days after surgery), I was up out of my bed wandering around the hospital disappearing from my room for lengths at time in the afternoon. As soon as I could, I wanted to go to the garden area outside on the 8th floor. I was hanging out with sis and mom when Harley went missing for a long time telling nobody where he went. After coming inside, I talked my sister into sitting in the lounge area next to the big glass picture windows looking out at Mt. Hood and looking through my books.

While I was sitting there, Harley appeared with my surprise! It was Merrie!!! She took the train down to come visit me and Harley went to the station to pick her up. What a fantastic treat! :) And of course she also brought me goodies! The first prize she pulled out of her bag was a nice soft pillow doll, OX, suitably with an expression of going through a hard time too. LOL It is hard to explain and you will understand when I show you a picture. Anyway, it is awesome I sleep with it every night! One night at home my mom peeped her head into my room through a doorway I was not expecting to see someone late at night which scared me half to death! I screamed in bloody terror as I clutched my pillow doll to protect me. It was pretty funny!

Merrie and I LOVE chocolate! So she got me 2 bars of specialty chocolate, fig and fennel dark chocolate and dark chocolate with butter toffee. Back at the room, I immediately broke into it and popped a square in my mouth. :D Merrie finds such unique things. She also gave me a box of homeopathic candy losenges for repair and healing which are great to take for my leg that has suffered a painful hematoma with neuralgia of the skin and brain health supplements to get my focus and cognitive function back on track. Finally, the last treat was a green tea healing garden set in matching scent of shower gel, lotion and body spray which was WONDERFUL after not being able to wear any scents for a couple days. Since being discharged, I have been greatly enjoyng showers with the fresh scent of the shower gel and smelling good with the body spray!

My beautiful ladies are so fabulous! Oh yeah, in addition to showering me with gifts mom and sis are always taking turns at the hospital so someone is with me. They have done this for 3 surgeries now THROUGHOUT THE NIGHT. In addition, they have given me massages, rubbed my head, combed my hair, washed my hair, painted my nails and mom has cooked, cleaned, washed my laundry, taken me shopping, and brought me to appts.

For my last surgery, my mother-in-law Cheryl is another lovely lady who flew out from Minnesota to stay with us for my first couple weeks of recovery helping me with my medicine schedule, helping us with my first days of being home, making sure my dogs were fed and Harley had what he needed each day, driving me around everywhere and going for walks. In addition to my mom and Harley, she has also accompanied me on one of my NIH visits assisting me with getting around and coordinating travel.

Thank you so much ladies for being a crucially important part of my life and helping me get through these battles with NF2!

Motivation
Lastly, I will leave you with one of my favorite quotes inscribed on a plaque my sister gave me in the hospital with a picture of a forest resembling one of my favorite hiking trails in the area.

"What lies behind us and what lies before us, are small matters compared to what lies within us." - Ralph Waldo Emerson

The day of reckoning arrives

2011-05-27T22:53:00.000-07:00

Photos taken with Rebecca's camera

Just catching you up here as I was unable to post leading up to the surgery. The photos of Harley and I and my dad and sister are in the OHSU admittance waiting room where my family waited me to go through the check in process of getting my plastic hospital bracelet with my name and signing off on the final forms. AND confirming that I have an advance directive on file. What the advance directive is is the patient's legal documentation of what he/she would like to have happen should the procedure renders one unconscious. Yeah so it is the real deal of facing your mortality and the possibility of not coming back or at least not in a state where you will be normal again and death is inevitable. My advance directive states I do not want to be put on life support should I reach a vegetative state which medical authorities deem irreversible with no chance of recovery. I think the only thing I have agreed to is to be administered pain medication so I can die comfortably.

Pretty heavy stuff, eh? I had to take time reading through it all and filling it out at my first surgery in 2007. It is kind of emotional being hit with having to contemplate something like that. So back then my family went down to the cafe for breakfast giving me time alone to read through it all and sort it out. Nothing has changed so for the last 2 surgeries I had to do nothing but just let office administrator know that I already have one on file and nothing needed to be changed.

Harley has first power of authority in the decision making should I become incapacitated and then my dad is second alternate in command. Both are logical and I trust to be able to seperate from being too emotional to carry out my wishes.

These pictures were snapped as my family and I parted ways for me to be taken down to surgery prep where I get undressed and into the hospital gown and several medical staff visit to ask my name and for me to explain what procedure I am having done and where. The reason is so that everyone is on the same page and there are no mistakes. Unbelievably true story at a hospital in the midwest, a brain surgery was performed on the WRONG side of someone's head! Imagine waking up in horrible pain only for them to tell you "Oh yeah sorry! We are going to have to do that again!"

I was really surprised they were taking me away so soon after I got there as with the previous 2 surgeries I had to wait until the afternoon. The good thing about that is that you do not have to suffer through hunger or thirst long or dry mouth. Before a surgery you cannot eat or drink anything after midnight. The only exception is a little water to wash down any medicine that you regularly take.

It is shortly after 7 am here so literally I was too tired to even think of being hungry and kept yawning through the check in process. I had last had something to eat about 8 pm, a light meal is suggested. And might I add to choose a neutral one and not something spicy that is going to burn coming back up afterward or give you heartburn up until surgery. After 3 experiences I got it down and stick to chicken with mashed potatoes and a sald. It was not a big meal and worked perfectly because it was pretty much digested by the time the surgery was over. So during the phase I was nauseous I did not have anything in me to throw up this time.

Last little tidbit.....you will not spend long in your clothes and they will be the clothes they give back to you when for your discharge. So they tell you to wear something comfortable. I have a zipper hoodies that easy easy to take on and off in case of cooler or warmer weather between the 2 dates It might be cool going in early in the morning and then warm out if your checkout is in the afternoon. I had a t-shirt in my bag and that was the case. The Kuhl band hoodie from REI was a gift to me from my sister and brother given to me 2 days before my first surgery in 2007. It is a favorite in my wardrobe and a good way to start out surgery day. Harley is wearing a matching fleece by Kuhl that I bought him the Christmas following my first surgery.

My parts are my comfy REI brand fleece (I have 2 pair, black and gray. The grey my sister also got me with the hoodie) and my shoes are an easy slip on pair of Keens which are easy to don after surgery. You will not be able to bend over to tie your shoes and either must cross your leg on your knee or just make it easy on yourself by wearing slip-ons.

And that explains the moments before surgery! Aftter the anethesiologist visit, I was wheeled away and then what seems like seconds passing by, I was waking up in recovery to the glow of white walls.

Reflective Moments

2011-05-27T22:25:00.000-07:00

Photos by Rebecca Dufek

Well I'll tell you, I don't think a whole lot needs to be said in this post. The pictures themselves explain everything and you can understand why going to the beach, this particular beach, is a necessary presurgery tradition for us.

We are so glad we were able to take our dogs with us this time and it was SO NEEDED for them as much as it was for us! (THANK YOU Dave and Christie Hammond for so graciously opening your get away home to us again and again!!!) This escapade of taking them to the coast and then to my parents I think has been a vacation of a lifetime for them. Truly they are having a ball and this is the first time before surgery they were not really stressed out . I think they barely noticed anything happened to me. The morning of surgery it was just as if my family and I were just taking off somewhere routinely for the day albiet really DANG early! Then a few days later I came back as if I went on vacation somewhere and have walked them as usual everyday since!

It was amazing to watch them really cherish the sunset! I could not believe it! They were VERY into it and were reluctant to leave just like people. I have often watched Jake at our 2 homes either sit on a hillside looking out at the view or on the deck admiring the trees blowing up above. It is as if he is absorbing the beauty just as I would and he is deeply in thought. I have many times wondered what is going through his mind. But the sunset was really cool because it is very vibrant and in color. They seemed to pick up on this which I found engrossing.

The first 2 nights we were there by ourselves we enjoyed the most magnifcent Hawaii style sunsets. It was heavenly!

The pics turned out so great that it was a tough choice which ones to post. I will have to put together an album for you maybe this weekend now that I have them uploaded.

The glory of food!

2011-05-27T00:05:00.000-07:00

Left photo taken by Rebecca Dufek

Right and Bottom photo taken by Jeanette De Grand

Ahh. I only have time for one short post this evening as I am WAY overdue for bed according to the new schedule. My hospital stay following the day of my surgery was actually only 3 days and get this....the only reason I was in a day longer was to give one more day to check my progress and to arrange a procedure I had to have which I will explain later (an outpatient surgery). Had I not stayed overnight Wednesday I would have beat my record for shortening my hospital time (I always have a goal of how many days before I get out).

With all my other surgeries I was incredbly ill actually projectile vomiting red jello on my husband's shoes after the first surgery in 2007 when that was all I could eat. I learned to incorporate and tolerate orange sherbet pretty well so that is typically the first food item I have or strawberry ice cream. This time was an incredible hotel vacation and I was able to eat EVERY meal as soon as they got me into a regular room and sitting up. I bounced back after the pain in ICU with amazing strength!
LOL In the picture here I am actually reading the menu and picking out a good assortment for lunch before I left the hospital last thursday. How funny eh! I never really got to enjoy the luxury of the food OHSU has to offer before and it rocks! When I told my friend in London I had french toast for my first breakfast, stunned he referred to my hospital as "swanky" which yeah I gotta confess it is pretty sweet and I am very fortunate!

I think an awesome veggie omlet is under the black cover here and I had cream of wheat on the second morning because with not being sick I did not want to get too carried away and keep my weight at least sort of in check. LOL The first day my sister ordered me a slice of cheesecake for lunch AND dinner! This is be the first time post surgery I will need to loose weight instead of gain it.

Check out the beautiful flowers my love and sister gave me on the window sill. The gerbera daisy plant with a matching pink gerbera daisy balloon my sister gave me at my celebration of life party the day before surgery. Then the day after surgery when I was moved out of ICU my sweet husband sent me the cute pretty in pink teapot with special Equadorian roses.

I was pretty spoiled and LOVED it! My entire window sill was lined with flowers cards - many beatufiul ones made by my mother, balloons, and even a fish bowl some visitors from New York brought me! Thank you so much for the warmth you all enveloped me with! I am still enjoying them in my parent's home!

Recovery is going very well for me and is actually like a REAL relaxing vacation which normally I have a very hard time doing. HAHA! You ask my husband and when we go on vacation it is actually more work! I like to pack in as much as possible and being a person of high physical activity, we are going to do something strenuous and sweat!
I am on restriction from doing that however and for now cannot be hiking, running, working out at the gym or operating at high stress. My mom has not too enthused that I am pushing the envelope this evening and wanted to get on the computer at 10 pm because I had not blogged yet. After dinner and celebrating my dad's birthday, I chose to watch TV for the first time to see the episode of "American Chopper" on "Deadliest Catch".

Seriously it has been very nice to have orders to settle down and just rest, take nice walks, relax, take naps, take a bath, read, and I am hoping to start on my puzzle tomorrow. So I am going to enjoy this moment while I have it. Night all! I will make a priority to do some posting tomorrow. :)

It was an AUSPICIOUS day! One week post my 3rd major brain surgery

2011-05-24T22:07:00.000-07:00

Photos by Michelle De Grand

Dad waiting at the tram station

Right - Shantelle and Kaydin riding the tram during their visit to OHSU during my surgery

View of Mt Hood from the tram connecting the OHSU clinic offices on the riverfront to the hospital on the hill Sorry no time to post last night. I was exasperated and tapped out! It has been an emotionally draining few days yet I AM keeping up with my fitness! (I have walked daily outdoors on a route that includes hills and walked for one hour and a half at a pretty good pace this evening.)

Ok... the brief run down...

Monday May 16th sometime after 7:30 am at the Oregon Health and Science University Hospsital, I was wheeled away and put to sleep for a repeat crainectomy on the left side of my brain. A tumor mass which was operated on back in Oct 2009 grew back and an additional cyst appeared to be growing from the tumor toward my brainstem. Not good! I recieved this news at my last checkup at the National Institutes of Health the first week of March. We coordinate my care between the NIH in Bethesda, Maryland and OHSU in Portland, OR. My doctors on either end of the country are actually colleagues so it works out nicely. Portland is about 3.5 hours from my home in WA and 40 min east from my parent's home in Oregon.

Back to the story...

As always, there seems to be more tumor once I am opened up than there appears on the scan. Some patients tend to have lobulated tumors or tumors in clusters and I happen to be one of those. I have not seen the report yet but the surgery was documented and filmed. My family informed me there was a heck of alot of tumor. The tumor mass was meshed with my vestibular and facial nerves making it tricky to get at. The surgery was 5 hours and I had the kindest post surgery wakeup in recovery that I have ever experienced. It is foggy but I have a vague memory of groggily waking up and wondering if they did the surgery yet. In my sister's blog post, that must have been the time she reported I had no pain. Apparently it must take a few minutes to kick in! ;-)

From each time I have been in the recovery, I remember fading in and out. For my first 2 surgeries my husband and our friend KC were there to greet me which I was SO RELIEVED to see as both were challenging experiencees, the first utterly terrifying which left me uncertain if I would pull through. This time though was so gentle and peaceful. My wondeful friend Shantelle, who also has NF2, and her son Kaydin were the first warm smiles that came into focus. Immediately comfort overcame me as if greeting a dear old friend at the pearly gates. Shantelle, who also comes from a family with several members with NF2 including her younger son, was there with my family to offer support and visit during the surgery. Thank you Shantelle! My family and I greatly appreaciated you and Kaydin being there (by the way, Shantelle came all the way down from WA state where she lives nearby in the Seattle area).

Unfortunately the bad part of coming out of surgery earlier in the day is that I have to spend LONGER in ICU which I TOTALLY dislike. Every hour I watch the darn clock patiently watching the painstakenly tick by until I can be moved to a regular room. What that means is that there is lots of pain in ICU and often you are pretty nauseous, throwing up, dizzy, ears ringing, and may be suffering headaches. Your neck is way to painful to turn your head or body either way so you end up flat on your back with just the view of the clock and the nurses station window.

I am not entirely certain what time it was when the surgery finished but I do recall seeing it turn 5 pm and agonizing over having to wait ALL night before I can get out. Although I only threw up once in ICU (water), I had lots of pain on both sides of my body making it extrememly uncomfortable. From the surgery positioning, my muscular thigh had been pressing into whatever chair setup immovable for 5 hours. As a result, the outer thigh muscle in my leg developed and painful hematoma and tightened into a HUGE painful knot. Further, the nerves of the skin of my right leg were left with a burning pain sensation as if being slapped repeatedly over a long duration of time. On the left of course was inflamed incision wrapping into a C shape above my ear and extending down to around my neck. It is so painful at first that I cannot turn my head for many hours afterward. Normally, you would try to turn your entire body but my right side was in so much pain that I was stuck flat on my back.

Thank heaven when the next morning came. However, there were not any rooms available for me!!!! So I had to stay longer in ICU.....that means more lying on my back being uncomfortable. Fortunately by late morning an occupational therapist showed up who helped me into a chair which felt so good! With another therapist we had me stand up and walk a few steps but I was still kind of dizzy and nauseated upon rising. So with the cathetar attached, I took a few steps from the chair toward the therapist and a few steps back.

Shortly after lunch, a regular room openned up for me, with a great view too! This time around to try to alleviate my violent reaction to anesthesia, they applied a sea sickness patch behind my right ear. And it worked!!!! Naturally with this type of surgery you do still get sick which is pretty much unavoidable but it was so much better! Think of the hurling pizza after doing 20 rides on the Zipper compared to slight motion sickness on a ferris wheel. As such, after reaching the phases to suck on ice chips, I managed to consume 2 cups of orange sorbet throughout my ICU stay and was able to eat lunch when moved to another room. As a matter of fact I ate ALL meals and held them ALL down following! It has been the best recovery I have experienced after chemo, radiosurgery and 3 brain surgeries - definitely the mark of an "AUSPICOUS" day!

I will continue to share with you my progress. Thank you so much for your prayers, words of encouragement, emails, cards, flowers which I am REALLY ENJOYING, well wishes, good vibes, get well treats, messages, visits, and support! My life is blessed by you all!

P.S. - Although ICU is an impatient waiting game for me, all the nurses and staff are MARVELOUS! My ICU nurse even gave me a sponge bath and one of the nurses was a climber too (the Oregon peaks - she noticed my Keep Climbing bracelet Sean Swarner gave me that that staff let me wear throughout the surgery. Pretty cool, eh? as technically you can't wear any jewelry)! I love the OHSU hospital even though I like to get out as fast as I can. In the coming days you will see some pics. Its an awesome place with a brilliant location! Truthfully it is sort of sad when I leave. The ambience there is so peaceful, staff friendly and helpful, clean, great food and views, and the mountains always like to appear to give me a send off! It is tradition!

Celebrating Life

2011-05-22T23:52:00.000-07:00

In addition to pursuing everything possible to get my head and attitude in the right place before surgery, my sister and I thought up making an event out of my last day with a "presurgery send off". Why be glum and approach your pre-surgeryday as a "last supper"? I have to confess to you I am greedy! I want to soak up as much life as available to me packed into months, days, hours, minutes, and seconds. Fretting about the surgery is not only an annoyance but also a frustrating hinderance cramping my lifestyle. So I let go to fully take in the moment.

Inspired by my optimistic outlook that I was going to pull thru and that the survival of such a major operation should be celebrated with the same enthusiasm as a birth, new job, new house, wedding, graduation, etc., so too should one's remarkable ability to endure and rise above a harrowing trauma. Upon concieving this idea, it became apparent to me that I most certainly have cause for celebration! I have survived 18 years beyond a cancer expiration date. Not only did I survive them, but I am very proud to have lived them fully with satisfaction. I am very pleased to feel I have lived a "dash". This is the balance with living with brain tumors and NF2. We cannot get down and discount my remission. Despite having problematic growing brain tumors (that are not cancer), we still need to honor and recognize reaching each remission anniversary for the beautiful life I have been blessed with.

Amazingly this signifcant date landed smack dab before my surgery! It all fell into place. My loving sister made a fun day of it starting off with a fun scavenger hunt game in the sand dunes and a delicious ice cream cake and goodies from my family for the surgery (snacks, special toiletries, nice smelling candle, cheerful plant and balloon, and books to pass the time).

In the afternoon we headed back to my parent's home in Scappoose to get in a light dinner, me a relaxing bath, and early to bed for all of us as 5 am was going to beckon before we knew it. (My surgery check in time was 6:30 am).

Vacation of the Mind

2011-05-22T00:26:00.000-07:00

It has become tradition with each brain surgery to start out in a place of peace, solace, and serenity to prepare our mental thoughts and attitudes for the intensity that lie ahead. My favorite place to connect with my inner self is the beach...in particular visiting the Hammond Beach house in Pacific City, Oregon.

For my past 2 brain surgeries, we were not in a position that we could take the dogs along. As a result, they became REALLY stressed out exhibiting odd behaviors. So even the dogs needed to take a vacation of the mind before the big day. Fortunately since my last surgery, my parents relocated outside of Portland and we were able to bring the dogs along on this whole surgery adventure.

We left with the dogs on a Wednesday and spent 2 entire days on the beach with amazing weather and glorious sunsets before my family joined us for the weekend. Each day we got in a good beach walk/dune exploration and I went for long runs the last 2 days before the surgery to get in some last mileage before at least a 4 to 6 week activity restriction.

The photo you see here is from the day before the surgery when I went for a 58 minute coastal road run out of town and ran back along the beach and over the HUGE Cape Kiwanda dune I must climb on every visit. The dogs are dressed with their "survivor" bandanas we all wore for the scavengar hunt game my sister planned. Coincidentally, the anniversary of my 18th year of remission from cancer landed the day before my surgery so we decided to approach this whole experience in style with a small party.

Breaking Recovery Records

2011-05-20T11:52:00.001-07:00

Hello All!

Quick note here to let you know I am out of the hospital already. Mt. Hood, Mt St. Helens, and Mt. Adams all showed up to give me a good send off on a glorious day! I hope to share a few photos with you if I can find the download cord to my camera today.

I have been doing so well this time because I was strong and in such great shape, that so far this has been the best recovery out of a treatment protocol for cancer 18 years ago, radiosurgery treatment for a large brain tumor in 2004, and then 3 brain surgeries dispersed between 2007 until now. I am breaking my own recovery records and actually could have gone home Wednesday but the doctors wanted to keep me overnight for one more day of observation as I have sustained significant imobility of my face. Aside from the new facial paralysis making things like eating, drinking, talking, and brushing my teeth a problem, the paralysis also prevented my left eye lid from fully closing. As a matter of fact, the half closure is the only movement I have on the left side of my face (keep in mind that the right side of my face is partially paralyzed). Therefore, using my face in any matter is exceptionally a challenge.

To protect my vision, the facial plastics team did an outpatient surgery on my eyelid in my room yesterday which is pretty much the main reason they kept me the extra day. To help the eyelid close they inserted a gold weight into the upper eyelid. My sister took some GREAT photos of the procedure so I hope she will be able to get them to me soon so I can post them for you. My eye sort of looks like a slight black eye on my upper lid but is actually purple in color and somewhat swelled. It is hard to see out of the eye and makes my vision kind of difficult. To not let it bother me and to read or see better, I sport a pirate eye patch. I told my husband that now his wife is a boxing pirate! hehe I sort of feel like I have a boxer's face after sustaining a few rounds.

I see that my family gavc people the hospital address and room number if people wanted to visit or send some cheer.

I am no longer there but still in Oregon. I am staying at my parent's home in Scappoose which is only a half hour from OHSU should I need to return if any complications develop. I also have appts scheduled with neurosurgery, facial rehabilitation, and will need to see facial plastics again to look at my eye. Hence I will be here for about 3 weeks.

For anyone wanting to get in touch with me, please email me at bluediverbeck AT yahoo DOT com. I can also access facebook from there and it is easy to get in touch with me as my facebook messages download to my email.

I am not out of the woods yet and this will be the challenge to not overdo it and end up getting sick. I feel I have pretty good energy and took a 45 min walk with my trainer Merrie yesterday afternoon with the dogs (we brought my babies so I could be with them. They became very stressed out the last 2 surgeries and this taking them with on a sort of vacation has made the transition for them go smoothly). I was a little concerned whether they would recognize me but everything went just fine. HEHE I cannot even fool them if I wear a halloween mask. They know my voice well!

OKEy doke. I need to get out for a little walk with them on such a beautiful day. take my first shower followed by lunch and a nap because after all, I am still a patient and my recovery has just begun.

Thanks everyone for your concern, encouragement, prayers, cheer, support, and for following along! I REALLY do appreciate it and it helps keep me going.

Have a great day! More later. :)

Room With a View

2011-05-17T16:15:00.000-07:00

Becky is now in her own room and out of Intensive Care! She was able to eat some lunch - her first posy surgery meal was......... chicken! She's not being too gastronomically adventurous yet but was ale to keep it down and is now texting away like a madwoman! :-) She is in the Kohler Pavilion, 10th Floor, Room 3. The actual address to cpoy/paste is below. This building is a newish, very nice wing and it has a view of the tram and downtown Portland and if the skies clear, we'll also be able to see Mount Hood! Becky was up and walked a short distance today but her leg was really hurting her. We determined no blood clots, though - just a REALLY knotted up quadricep from laying on it all through the surgery. Good news all around and she seems to very quickly be on the mend. Thanks to everyone for your continued support, thoughts, prayers and well wishes!!

OHSU Healthcare
KPV 10, Room #3
Rebecca Dufek
3181 SW Sam Jackson Park Rd.
Portland, OR 97239-3098

Out of the ICU Today!

2011-05-17T08:32:00.000-07:00

Becky hates the ICU... it is always where she feels the worst and it always seems to take forever for time to pass until she can get into another room. This time, her surgery was much earlier in the day, so she spent more time in the ICU, but she was much less sick than the last time, so it was a bit of a double-edged sword. In fact, I don't think she's thrown up once... but she does still feel nausea and does have pain, both at the incision site and on her leg, where she has a bruise, but she thinks it might be a blood clot. The plan is to get that checked out with an ultrasound this morning. She'll also be moved to her own room at some point today, but they aren't yet sure when, since it really depends on when a bed becomes available. Hopefully we'll get to talk to the doctor this morning as well for a debrief on the procedure and some more details on the results. Stay tuned!

Out of Surgery

2011-05-16T17:30:00.000-07:00

Becky is now out of surgery and headed to get a CAT scan before going to the ICU. On the positive side, she's awake and alert and the doctors were able to remove most of the tumor and the cyst they were targeting. She does have some side effects, though, which include facial paralysis and some pretty major double vision. The docs say the problems should dissipate in the next six months. Overall, a very positive and successful surgery. When she woke up she wasn't sure if she had the surgery yet, and wasn't in pain or sick, which was her worst experience the last time around. They used Scopolomine patches this time to ward against the nausea and they seemed to work wonders. We can't wait to get in and see her!

Under the Knife

2011-05-16T10:40:00.000-07:00

Becky is now in surgery and we just received an update that she is doing well, everything is stable, and they're starting their work. This is her sister giving periodic updates... Becky was up at the crack of dawn to check in at the hospital which was actually a good thing, since she said she was too tired to be nervous. She seemed very prepared and calm, even yawning as they were wheeling her into the OR! As always she was chatting up all the medical staff who came to get her ready for the surgery. :-) We'll keep updating the blog as we hear from the surgical staff throughout the expected five hour surgery. I just want to say thank you to everyone who is thinking of her and praying that all will go well... the support has been amazing and is incredibly uplifting for Becky. We are all so appreciative!! Special thanks to Shantelle Hoskins Pitts and her son Kaydin who came to sit with us while we wait for news. Shantelle has numerous cases of NF2 in her family, including herself and her youngest son who was recently diagnosed at just three years old. It's amazing how many wonderful people there are in the NF community, but a shame we all have to meet because of NF. Stay tuned and we're hoping we can bring more good news throughout the day!

The "Un-identified" object

2011-05-10T01:21:00.001-07:00

For a little better view in order to see the object that my NIH doctor thinks is a cyst, click on the photo above to enlarge the image.

The plan......

The surgery will be performed by Johnny Delashaw and the OHSU neurosurgery team in Portland, Oregon. OHSU is the abbreviation for the Oregon Health and Science University where I have had my previous 2 surgeries.

The date will be Monday May 16th with the time to check in to be confirmed on friday.

The surgery to be performed will be the same as my previous 2 which is a debulking of the vestibular schwannoma via the retrosigmoid approach.

It is estimated my hospital stay will be 3-5 days following my surgery and then 4-6 weeks of recovery before I can return to the gym, running, hiking, and diving.

"How does the surgery work?" I have been recently asked in an interview.

All my hair will not be shaved off. For the last surgery they only shaved a little bit along the intended incision site which my long hair covered up. The incision is actually quite large though. It is the shape of a half moon or C extending above and around my ear ending along my neck. So perhaps it is about 4 inches. I will have to measure this time.

Once they open the skull, they use a retractor tool to life up the back of the brain called the Cerebellum. The tumor is behind it, so they need to move it out of the way in order to freely access the mass Then they will cut into or puncture the tumor and use a sonicator (like the instrument used to vibrate the tartar off your teeth during a dental cleaning) to break up the inside of the tumor. Then they safely remove as much tumor tissue as possible without damaging nerves and structures attached.

It was once described to me like scooping out the inside of an orange.

So yes, that means to peel or "shell" and some tumor tissue will be left behind.

The surgery typically takes 4-6 hours.

Waking up in recovery is a B_TCH! I personally do not tolerate it well and the first time around was pretty scary. On my second surgery they were able to administer anesthesia a little gentler on me so I was not waking up VIOLENTLY throwing up and convulsing. Yet I was still throwing up and had pain. It was just easier going than the first. That part makes me really apprehensive and I do not look forward to.

After I get out of the hospital I will be staying in Oregon with my parents for the first couple weeks of recovery. The first week is really challenging and I need a care giver to help me......most especially with giving me meds on a consistent schedule.

Okey doke. That gives you the basic gist. I need to hit the hay. We are going to try out a dive tomorrow and then leave for the Oregon coast for a few days on Wednesday. Nighty Nite! :)

When "brain moles" get busy

2011-05-10T00:55:00.000-07:00

These are my MRI images taken at the NIH over the last year. The most recent image is on the left with the image on the right from a year ago and the one 6 months between each.

Actually, my brain looks rather fantastic compared to prior to my first brain surgery in 2007 when tumors on either side of the brainstem were nearly pinching it off. Even so, the last tumor operated on is showing signifcant growth which the doctors want to address before it grows too much and causes problems by putting pressure on the brainstem again.

By the way, if you have not already figured it out, the white stuff are the tumors. The image series on the right is a different perspective and plane of viewing my brain from the top down. Yes, that white you see are other tumors. In all honestly, I have never been certain of the exact number of tumors in my brain. We deal with one or 2 at a time which are most concerning (the ones surrounding the brainstem). Otherwise, to consider them all is quite overwhelming.

It is difficult to see but there is a dark shaded area protruding from the left side of the mass. That is thought to be the cyst which the surgery team plans on draining.

What does an MRI machine look like?

2011-05-06T05:48:00.000-07:00

These are images from my last visit at the National Institutes of Health. Every 6 months I have pictures of my brain taken using the Magnetic Resonance Imaging machine and every year of my spine. Then the images are compared to images taken 6 months to a few years prior to assess if there has been growth of the tumors. Sometimes the growth can be minimal as the tumors are generally slow growing. So that is why images are compared over a long span of time to accurately determine how much growth is taking place. My recent scan was compared over 3 visits (so a year and a half) and you can definitely see the tumor getting bigger. The one we are talking about is next to the brainstem and a cyst either filled with fluid or blood is protruding off of it. While some tumors have leeway to get quite large, this tumor does not because it starts to impede my brainstem.

The "Beasts" are on a rampage again!

2011-05-06T04:03:00.001-07:00

Where do I start? Hmmn....Well first of all, don't be concerned about my lack of posts this year. That really doesn't mean anything. Truthfully I have been too busy "living the life". After the holidays what transpired were a few foundation events with very small and short speaking engagements but none the less required me to think about and prepare for, snowshoe season, 4 trips to Oregon, a visit to the NIH in February, a major involvement with recruiting and leading my largest team (32) in the Leukemia and Lymphoma Society Big Climb March charity event successfully exceeding our fundraising goal, running 2-3 times a week, my regular weekly session with my trainer at the gym along with my consistent strength training 3 days a week, early commencement of hike season (just finished my 8th hike for the year Wednesday), LOTS of connecting with patients around the world, exercising the dogs regularly, and pondering a major medical decision all the while trying to keep up with my normal duties as a wife. Oh yeah, there was a last day of interviews for the upcoming movie too. I keep pretty busy so all that living either left no time to blog or just plain tapped me out! ;-) So sorry for my absence.

Upon my 4th visit to the National Institutes of Health where I am a participant in a natural history study of NF2, we recieved the completely unexpected news that I have had a tumor regrowth of the mass operated on in Oct 2009 - only a year and a half prior! I could not believe it! Harley and I went around battles where I could not accept the situation as concerning as it is. In fact, I pushed it off mostly for a month directing my focus on the Big Climb preparation. My surgeons both on the east coast and west coast concurred that they wanted me to get surgery soon. My inclination was to not schedule until the fall (hehe AGAIN) but neither doctor felt it would be a good idea to wait that long.

The consensus is that I am fit and healthy which makes me a great candidate. The doctors want me to have the surgery while I am strong and before I become sick to offer the best chance of a promising recovery. However, when you feel on top of the world it is very difficult to agree to putting your body through intense trauma and pain which carries significant risks. It is just plain tough and although I made a decision in March, since then I have been playing the conversation back and forth in my mind of convincing myself why I do or do not need surgery. There have been days where I wonder if this is the last time I will be able to traverse a particular hike in the mountains, freely walk again with my hands in my pockets, drive from point A to point B, trample along a narly riverbed shore, or a slew of things. I have often questioned myself in the preceeding weeks if I am making the right decision. Even though I am in the shape of my life and most likely in the club of the fittest patients, some things in life are just beyond our control and out of our hands. The possibility that some fluke thing may happen always exists and in regards to that I wonder if I should have waited just to carry out the fantasy a little longer.

In the most difficult of days trying to connect and find a way to describe the experience, I relate the situation of when to schedule surgery to being on a sputtering plane flying over the wide open ocean. The plane for whatever reason is running low on fuel and you do not know if there is enough to get you to a continental mass safely where you can land. Hence, your options are to sit on the plane hoping to find land when it is likely to crash into the ocean or you can jump out of the plane with a parachute. If you have never jumped out of a plane before and you are terrified of heights, your anxiety will be running wild! But if you are in a situation such as I where you have been there before, let's just say that it did not conquer your fear of heights and that your prior experience inflicted pain. Maybe you broke an arm or leg. Therefore, you would be in no hurry to feel that way again. So instead of jumping out immediately, you sit there and debate with yourself about it. Meanwhile you hope that somehow the plane will magically find land as you are thinking so you do not have to jump out afterall.

So I made the decision to jump. Before the whole plane dilemna I had been engrossed in a really good book. Now that it is time to jump, I hope I am able to find the book again. The book is my quality of life. Surgery always carries risk that you might not be able to return to the same quality of life afterward. That is the scary part. I suppose it would be like jumping through a worm hole. It is likely that you will be just fine BUT there is always a chance that an oddity might happen and your particles are scattered out into the universe or your body does not rematerialize correctly leaving an arm hanging out of your abdomen.

On a better note, the finality of my cancer treatment and commencement of my remission anniversary is this month! I am incredibly grateful for my life and the additional 18 years I have been granted. They have been a thrilling adventure and I have to say that I am really quite blessed. It has been such a joy to do things again which were hindered after the radiosurgery but returned or improved after the first surgery. It is so interesting how deeply you appreciate something after it has been compromised or was lost.

Finding Your Center

2011-05-01T11:40:00.000-07:00

In pursuit of peace and serenity -

I will explain more later but right now I need to get ready as we are taking off up north and this beautiful fine sunny day to catch the very last weekend of bloom in the tulip fields of Skagit valley which are as abundant as those you may imagine in Holland. Although I seriously lack in the green thumb department, I am incredibly appreciative of the marvelous work of others. Visiting beautiful botanical gardens and wonderous flowers brings a calm over me of peace and contentment.

Last weekend we went to Seattle to visit the lovely Volunteer Park Conservatory which is a traditional place for me to visit to destress. Afterward we ventured out to the beach of Puget Sound at Golden Gardens park where being by the water is theraputic for both of us. Today after visiting the floral fields, we are going to take a little adventure to the famous and treacherous but breathtaking Deception Pass.

Happy Spring!

2011-04-02T13:24:00.000-07:00

Spring is here already! Time sure flies. I hope you are out enjoying it. Here are a few pics from a visit to my parents in Oregon mid-March when we celebrated mom's birthday. She loves planting flowers so I set her up for a splash of season color with a lovely array of primroses for immediate gratification and 100 iris bulbs to accent the front of their home.

So what did you do for opening day of spring? I had a nice evening run with our dog Katie in a nearby neighborhood. The delicate pink cherry trees in bloom complimented by their sweet aroma and coupled with patches of yellow and cream daffodils made my 2 jaunts up the large hill pass by in an enjoyable flash.

It does certainly feel great to be alive. Spring is my favorite with all the colors and scents of new life bursting forth!

"Life" is "Cool"! "Love" Life!

2011-01-29T12:20:00.000-08:00

Photos taken by Harley Dufek in Cozumel, Mexico

Photo of Rebecca Dufek compliments of reknowned world underwater photographer Bonnie Pelnar of Underwater Colours

http://www.underwatercolours.com/

"I like living. I have sometimes been wildly, despairingly, acutely miserable, racked with sorrow, but through it all I still know quite certainly that just to be alive is a grand thing." - Agatha Christie

(quote taken from the the book "Living a Five Star Life" by Betty Mahalik, a Simple Truths publication http://www.simpletruths.com/ )

I love life! Even though I have seen my share of struggle through cancer, sickness, disappointment, heartbreak, frustration, and uncertainty, I am still very happy to be glued to the earth. When you live with brain tumors or an incurable disease or condition, down periods are part of the territory. But the nice thing about that is that it opens you to the opportunity to appreciate life with vivid splendor, inquisitive curiosity, and marvelous wonder.

I was recently watching the "Life" documentary series - similiar to "Earth" and "Blue Planet", both of which I happily own. Every little detail of watching plants miraculously burst forth from the ground, vines sprawling up trees exceeding 100 feet, the survival of species of invertebrates in the darkest and hottest depths (750 degrees F) of the ocean or the coldest flourishing under 8 feet of ice in Antarctica, all intrigue and amaze me! What an incredible gift to have the opportunity to live on earth to witness life in its magnificence!

Although I love the mountains, the woods, botanical and floral gardens, and the seashore, the underwater world is my favorite and the reason I became a scubadiver. I SO LOVE to just hover over or under something - such as in the photo you see, and become absorbed in being the respectful observer of the niches of other creatures.

the sign for "life": http://www.signingsavvy.com/sign/life

the sign for "love" - a thing and not a person: http://www.signingsavvy.com/sign/LOVE/3828/1

the sign for "cool": http://www.signingsavvy.com/sign/COOL/7/1

NOTE: This is not the way we sign cool in Seattle. As a matter of fact I have never seen it signed that way. How we sign it is you take your open dominant hand with your fingers spread apart like the hand sign for "5". Then you bring your hand up to your chest with only your thumb touching your body while the other 4 fingers point out away from your chest. Then wiggle your 4 fingers vigorously. "Cool" dude! :)

"D" is for my adorable "dad"

2011-01-28T14:08:00.000-08:00

Right now my dad is in Finland w0rking hard to preserve the environment for future generations by implementing wind power technology as an energy source which will conserve the precious resources of the earth.

It is because of my dad that I even would have cooked up the idea of trekking up Kilimanjaro. Ever since I have been a child, we were always on an outside adventure going hiking, fishing, canoeing, camping, snowmobiling, cross country skiing, ice skating on woodland ponds on my grandpa's property, engaging in woodland/wildlife walks, and exploring the midwest on motorcycle or jeep.

While I was in high school his interest in the Huron Mountains of Michigan expanded to the mountains of the west and particularly the NW while visiting on a business trip. He also spent some time in Japan. I was fascinated by the marvelous photos of these foreign lands so unlike where I grew up. On the bus in the mornings, I would fantasize that the smokey lavendar gray clouds on the horizon were actually silolettes of great mountains. I vowed one day I would live in the NW.

When I was in college, I met people who had been to Mt. Rainier and shared stories and pictures that further enticed my desire to be among them. My dad and I became enthralled with reading about great peaks and mountaineers. I knew someday we would both live near them.

In addition to my love and respect of nature which I learned from my father, I also gained the important values of honor, integrity, and a sense of right and wrong. My dad has played a crucial role in developing my character.

The photos are from Christmas and I felt compelled to really give him a gift reflecting my appreciation for the life he has shared and passed on to me. The photo is my best hiking picture I took in the Cascade mountains this summer while training for Kilimanjaro. It is a pretty challenging one for me and aside from trekking up Kilimanjaro itself, it rated as the second most difficult in terrain I had hiked since I have been able to return to the mountains again.

It was not easy to get there but oh the view was so spectacular and worth it! We sat and had lunch which felt like the most peaceful and beautiful place on earth. It is a photo you can look up at that will melt your stress away.

the sign for "D": http://www.signingsavvy.com/sign/D/5823/1

the sign for "dad": http://www.signingsavvy.com/sign/dad

Back in the "Game"

2011-01-26T23:55:00.001-08:00

This evening I polished off a nice 35-40 minute run which felt GREAT! Well, I mean it was not easy and I did have to push myself to keep going, but after I finished I was stoked!

It has been just over a week since I have run because I twisted my ankle on the unexpected down step of a curb. While my ankle did not look too bad, there was some swelling and puffiness coupled with the feeling of pressing on a bruise. At first when I had the accident, it seemed pretty terrible and was immediately painful. I toppled over onto the pavement and after rolling around for a few seconds I lied there before getting up. I worried just how long it was going to put me out of training. I estimated after being able to walk the remaining 15 minutes to the house that I could be back to training after a week. There was still some soreness over the weekend but today I felt ready.

I have been having a difficult last week on top of it with fighting off an illness, fatigue, migranes, zoning out and barely able to function or stay awake. With that, the vision has been pretty bothersome making driving a prospect you probably do not want to know about.

Back in December I had my followup appointment to recheck my blood labs. In the final week of the month, I was on my way down again with lower iron and red blood cell stats meaning I was starting to slip into anemia again. When it comes on full bore, I get the side effects one experiences at high altitude with lower oxygen levels in the air. At the appointment, we agreed for me to have another iron infusion in January (as you recall from blog post last May, I had 3 weeks of infusions to recover from severe anemia). I sort of put off scheduling the infusion this month but at the end of last week my symptoms were pushing me enough that it was time.

Unlike getting chemo, I GREATLY look forward to an infusion to get a feel better boost! I feel guilty marching into the chemo ward vibrantly among seriously sick patients eager to get hooked up to the IV when I know chemo is just a horrible thing to motivate yourself to go to because you know you are going to feel like crap again. Don't get me wrong, I still HATE needles and the tiring and painful poking process. But the iron infusion is so GREAT that I will grip the chair arm and tough it out in order to get that thing going.

Two pokes today. The first vein collapsed. The sweet little asian RN Dulce felt bad and was very apologetic. I assured her it was ok and that she did a great job. Two pokes is not bad at all and it is really lucky to get it in one which she accomplished on my blood draw in December. I thanked her profusely for a job well done and for making it quick. I have experienced elsewhere with up to 7 pokes and incidents where blood was flying all over. LOL So really this was nothing and I am quite a big baby. Today I was thinking how it would be so fantastic if they invented a mode of transfering IV medicines via a patch that would absorb into the skin. You never know! That could be on the horizon and not such as head in the clouds fantasy!

It felt so good to have my energy levels up again and I know that had I not gotten the infusion today, I would not have been up to going for a run this evening. Now the difficult part will be maintaining my iron levels and not tapping myself out again. So there will need to be a careful balance of nutrition, not forgetting supplementation like I did for a week, and adhering to a proper sleep cycle. It will be challenging not to jump into too much because I have energy. I will have my counts monitored again in the first week of March for my NIH visit and then again out here in May.

For now, I am happily back in the game.

Sign for "game": http://www.signingsavvy.com/sign/GAME/161/1

Bonus sign for "run": http://www.signingsavvy.com/sign/RUN/4403/1

"C' the cool "cat"

2011-01-22T22:02:00.000-08:00

You kitty lovers will like this and not feel left out seeing my recent post a this week focused on dogs.

With the exception of our friend KC's crazy parrot who has bitten me TWICE and HARD, I tend to have animal magnatism. Even fish at the aquarium will gravitate towards me and follow me along the glass! Way cool by the way!

With my babies so far away, I still managed to have a friend keep me company when off the mountain. Their was a very sweet hotel cat who followed me all over in the main lounge and meal area. If I sat in the common area using Harley's IPAD, he sat right next to me. When dining at the table, he was politely sat right at my feet!

He reminded me of my sister's french bichon dog that my family adopted while I was on the east coast for a summer when I was 19. Oddly when I first came home, it was as if he already knew me and immediately cozied up to me whether I was agreeable to it or not (you have to understand that he was the first small nonhunting indoor dog my family ever had....and he was WHITE! It was a little bit of a shocker to warm up to.)

Anyhow, although I am a dog person there are cats of friends and family who win me over. This fellow all the way in Africa was the sort of chap and I was sad to have to say goodbye as ours was a short love affair.

Here are some pictures of him snuggled in his napping nesting spot among the flower beds just off the porch dining hall. How precious, eh?

"C": http://www.signingsavvy.com/sign/C/5822/1

"Cat": http://www.signingsavvy.com/sign/cat

Wandering Around the Plantation

2011-01-21T19:56:00.000-08:00

Our hotel property grew their own banana plantation. Every morning breakfast included little sweet bananas very unlike our large yellow variety at the grocery stores in America.

"B" "banana" bonanza in Africa

2011-01-21T19:05:00.000-08:00

Aside from coffee and bread of course, bananas are pretty much a staple food in Tanzania. Everywhere around Arusha ladies and men were carrying huge bunches of them on their heads or on the backs of motorcyles and bicycles. It was really quite AMAZING! Dear lord I cannot even ride a bike now and back when I could, I cannot imagine pedaling around with an enormous cluster of bananas hanging off the back!

The handshape for "B": http://www.signingsavvy.com/sign/B/5821/1

The sign for "banana": http://www.signingsavvy.com/sign/banana

"A" is for "Africa"

2011-01-20T16:03:00.000-08:00

Photo on the right: Masai village among the vast grasslands of Tanzania that we passed by on the way to Manyara National Park for Safari day 1

Photo on the left:
After Ron, Harley, Tim and I made it off the mountain, on day 5 we wandered around the town of Arusha while the rest of the team pushed on toward the summit. All the ladies wear colorful wraps called "saris" and carry baskets on their heads.

Below Harley and I are standing above Ngorongoro Crater wildlife refuge the site of day 2 on safari

A newly deafened friend from surgery has expressed his interest in learning sign language which reminded me of going back to the beginning. Aside from just learning a bunch of signs, in order to efficiently communicate in sign language, one should at least know how to fingerspell the alphabet. For one, you need to know how to spell your own name as well as the name of others. Second, there are only so many signs used in sign language. They are LOTS of English words (in particular scientific words and names) which have no alternative but to be spelled out.

Therefore, I promised my friend that this week I was going to post the alphabet. At first when I thought about it a couple weeks back, I had planned to post each letter for each day. I was not sure it could work out but luckily the annimated sign website I have been using does indeed have a link for each letter! It will be additional fun to pick out pictures to go with each letter that I can also provide you a sign for. So you will be getting a letter AND a sign to learn! What fun! :D

It has been some time since I have addressed the Africa trip so we are going to go back to that starting with some pictures and the sign for "Africa". To enlarge the photos to get a closer look, just simply click on the picture.

Note: If you would like to jump ahead at a faster pace, you can see how to sign the entire alphabet at the link below.

How to fingerspell the alphabet:

http://www.signingsavvy.com/browse-letter

Letter A: http://www.signingsavvy.com/sign/A/5820/1

Africa: http://www.signingsavvy.com/sign/AFRICA/863/1

Note: Your hand sort of outlines the shape of the continent.

For both the alphabet and signs, practice in the mirror to see if you are signing or forming handshapes correctly.

Happy "birthday" boys!

2011-01-19T00:16:00.001-08:00

Left: DJ

Right: Harley

Would you believe that Harley and my sister's boyfriend share the same birthday today? Our uncle, dad's brother, was also born on this date.

So naturally the sign for today is "birthday"! :)

http://www.signingsavvy.com/sign/birthday

Note: In Seattle a shorter variation is used to sign birthday. Using the middle finger on the dominant hand, touch the middle finger to the chin and then bring it down and touch the middle of your chest.

Signs you see can vary depending on what region of the country you are in just like people in the south, east coast, and upper midwest/Canada have different accents. So if a browser or program you are using shows a different way to sign a word than how you see local people sign the same thing, it does not mean either person is wrong. Sometimes there can be 3 different ways to sign the same word.

Among the Deaf community in the Seattle area, I have seen them sign breakfast, lunch, dinner, and thursday different than the ASL browser developed by Michigan State University teaches and also in some beginning level sign language books.

Generally, Deaf people will understand the meaning of the variation but new signers or late deafened adults who are not fluently active may not.

Who Let the "Dogs" Out?

2011-01-18T22:53:00.001-08:00

DJ and my neice Jazz (Jasmine) and me with Santa Spud on Christmas Eve

Left: Katie and Jake during the first snow before thanksgiving enjoying their new digs INSIDE the house on their new pet beds - Jake is daydreaming looking out at the snow and Katie is looking at the camera

Below: Jake is being effectionate with mommy after having a joyous ball opening presents on Christmas day.

We are a family of dog lovers. Ever since I was in the third grade we have had a dog as the main pet. As a matter of fact, none of us 3 kids have any children (human that is) but we all have dogs, including mom and dad. Therefore, our pets (our kids) are the total center of our world. Both my sister and I have 2 dogs, a boy and girl respectively while my brother has a dog and 2 cats.

Mine are actually true blood brother and sister from the same litter. My husband affectionately adopted them for me for my 30th birthday and they could not have come at a better time. I was diagnosed with NF2 only a year and a half to 2 years prior and things changed rapidly. They filled a real void while my hearing dwindled and have brought me years of joy despite peroids of turmoil. No matter how sad I may be or how painfully I may be injured, they always manage to change the mood (with the exception of naughty times rolling in horse or goose poop, chasing after a wild animal for long periods of time, or refusing to get back in the truck when it is time to go. All kids have to have some bad habits I guess.)

Spud and Jazz are just as dear to my heart and they LOVE auntie Becky as well as uncle Harley. When I come over they can barely contain themselves. I spent the weekend with them while my sister and DJ were out of town.

Before I left, I went for a quick run and twisted my ankle because I could not estimate the drop in the curb with the double vision compounded by the dim street lights. Back at the house while stretching, I winced in pain when my ankle gave a sharp crack while I was stretching. Concerned that I was hurt, just like Katie and Jake do, they were immediately licking me to death until my grimace turned into a smile and then laugh.

Click the following link to see how to sign "dog": http://www.signingsavvy.com/sign/dog

"You" and "Me" and Me and You....So Happy "Together"

2011-01-15T12:06:00.000-08:00

The year following radiosurgery treatment in July 2004 became progressively worse as the months spanned out from the treatment. With the tumor on a swelling rampage, the bigger it grew, the worse my balance became. At first it became apparent that riding a bike, a motorcycle, and rollerblading would be out of the picture. Other things I engaged in aside from scuba diving were waterskiing, skiing, and hiking. The hiking was the last thing I was able to hold on to and the day I could no longer control my body to handle that safely, I was completely devastated. It killed me to see mountains that my soul yearned to explore all my life and could no longer reach. I was pummeled!

Then in winter 2006 a hiking friend of mine invited us to join her on a snowshoe outing in the Cascades. I was HOOKED!

Seeing how happy it made me to be in the mountains once again, my loving husband took a leap of faith in purchasing me my snowshoes (top of the line no less). I would not have bought them myself. I am too thrifty. But boy as every snowshoe season comes and goes, I am more and more grateful that he took that chance! When I was down and out grieving a great many losses, someone was in tune to help me find a way to adapt via a new outlet to pursue my passion.

Once again, we are heading into the mountains tomorrow. They have always been my church. I am overtaken by their magnificent beauty which are too perfect to have not been created by a higher being.

Signs for the weekend:

You: http://www.signingsavvy.com/sign/YOU/500/1

Me (also the same sign for the personfication "I"): http://www.signingsavvy.com/sign/ME/3864/1

Together: http://www.signingsavvy.com/sign/together

"Last" is not a bad thing either!

2011-01-14T13:05:00.001-08:00

Like diving or snorkeling, visiting a zoo, and wandering around an aquarium, I was practically the last person off the mountain (with the exception of ski hill staff zooming by on snowmobiles). As the last vestiges of daylight drifted by, 2 snowboarders zipped past me as I approached the bottom. I am sure they were coming from the very top of a Blackcomb glacier as the lifts and gondolas had been shut down and closed for about 15 minutes. (Blackcomb glacier is so high up that it takes quite a long time to make it back down. It was afterall, the site of the 2010 Olympic downhill skiing event!!!!)

The nice thing about being a snowshoer on a ski hill is that you end up being one of the last ones off since you cannot wizz on down like everyone else. Because working our way down is slower, we had time to enjoy the marvelous views and sunset the entire time which I probably would not be able to do had I still been able to ski. My vision cannot keep up with fast movements which either makes things a messy blur or triggers an annoying double vision episode throwing me into a fit of vertigo.

As we marveled at the glory of the sun setting in the mountains on the way down, it occurred to me of what an unforeseen opportunity the NF2 created. I never in my life imagined to snowshoe up a ski hill! Doing so set us apart and gave us some solitude. We were off doing our own thing and going against the grain of everyone else. I am sure people looking down at us digging into the hill thought "Wow! What alot of work! Who in their right mind would do that when you can just take this nice high speed transit and race your way back to the bottom?" I know I would have thought that back in my carefree days without the concerns and effects NF2 inflicts.

Yet, what those who may have been bewildered over my craziness missed is what an incredible empowering opportunity lay before me. I don't know. I think I might venture to say that I enjoyed tackling that mountain more than I ever did skiing effortlessly down it. Equally satisfying was to be able to turn around and have the ability to enjoy the view all the way down. No way did I want to ride the gondola back as Harley suggested. I would not do that unless I had become intolerably cold on the verge of hypothermia or frost bite for fingers and toes. I wanted to prolong the experience as long as possible.

I took GREAT pleasure in being LAST!

click the following link to see how to sign "Last", also the same as "final":

http://www.signingsavvy.com/sign/LAST/3770/1

"No" is not a dirty word.

2011-01-14T12:03:00.001-08:00

Photo top left, me: "No, let's keep going up! I want to see what is over the edge."

Top of the gondola, me: "No, I am not ready to go back yet. I want to keep going a little further to check out the view there. (After hunting around and falling in a hole trying to find a place to pee) - "I am pretty cold and need to get my body temp up by working uphill."

When I am doing something I really enjoy, I don't want to stop savoring every minute of it. I think it boils down to the issue that I have had to face my own mortality again and again - cancer, a few brain surgeries, and thr threat of constantly growing brain tumors and a few hiding in my spine. I like to take advantage of doing things that make me feel alive as I am intimately aware life can change at any given moment.

click the following link to see how to sign "No".

http://www.signingsavvy.com/sign/NO/291/1

Make sure you check out the sign to confirm you are signing it correctly. I have seen some of you sign it with 2 fingers which is the sign for bird or a combination of the "yes" movement with the "no" handshape. Take a look. It is used with 3 fingers if you cannot see it clearly. You don't move the hand at all. You only take the open index-thumb-middle finger combination (as in the number 3) and simply close them bringing the fingers together. The annimation shows a repeating of this movement but in the Deaf community people just do a sharp snap of the movement once. I like to think of it as a friend's parrot closing his beak (he likes to bite me and NO he does not like me LOL).

"Road" "Trip" to "Canada"

2011-01-12T23:56:00.001-08:00

Ahh....can you tell I have an insatieable desire for the mountains? ;-)

Third time this year I have been out playing in them and the first month of the year is not even half over yet! I am making a weekly habit of doing so. hehehe

So now you know the reason for my absence. A week ago my trainer Merrie told me that she and Pedro were heading up to Whistler Ski Resort for their annual ski vacation. "Cool!" I thought recalling how we were marveled at its glory when we visited 14 years ago (back when we were avid downhill skiers).

Since I don't ski anymore after losing balance function, I just assumed those kind of places were no longer an option for me. However, when Merrie ran into Harley Friday morning she invited us to come up and join them. When she extended the invite again to me later that afternoon I immediately responded "I can't ski!" Then she rebuked "You can go snowshoeing." "Hmmn." I paused and thought about what a great idea I had not thought of doing. I never imagined going to a ski resort to snowshoe. Yet I am pretty new to the sport and have only been to 3 trails in the Cascades. Then I came back down to reality and responded "oh, well Harley has to work." Merrie fired back "I saw him this morning and he was thinking about it."
"Really?" I questioned trying not too get too excited in the event it would not work out. "Well I will talk to him later tonight."

To my delight, Harley had indeed given serious consideration to driving up to Canada for a few days to spend a day of snowshoeing. So once we were packed, off we went (no it was not as easy as it sounds and it took a long time for me to get my stuff together. Apparently I do not have spontaneous travel down pat yet.)

Due to missing the sign of the day Saturday-Tuesday, I am going to give you a few all at once related to the post and pictures.

Above in the first shot is the Canadian city of Vancouver, British Columbia off in the distance as we were approaching Saturday afternoon.

So the first sign is "Canada": http://www.signingsavvy.com/sign/CANADA/754/1

The drive along the highway from Vancouver to Whistler is breaktaking! It is a ride of twists and turns along a road winding between mountains jutting up from the water. Not a ride I would recommend doing at night! ;-)

The sign for "road" is: http://www.signingsavvy.com/sign/ROAD/4390/1

The trip was a fabulous get away reminiscent of our younger days when we first moved to the NW. If you were asked a good description of part of our character it is that we LOVE to travel. Our lives would feel so incomplete if we were not out exploring the world. We have made a habit in our many years together to travel yearly.

The sign for "travel" and "trip" is the same: http://www.signingsavvy.com/sign/TRIP/5790/1

Puffy coats equal warmth

2011-01-12T23:37:00.001-08:00

LOL, Merrie is going to kill me when she finds out I posted this photo of her wearing her puffy coat! She thought she looked huge in her down coat next to me in my thin North Face fleece lined jacket (it does not get that cold near Seattle so other than Kilimanjaro, I have not had a need for a down coat). Merrie on the other hand is both a skier and a climber and thus has her big bright yellow coat. I think she looks pretty cute in it though.

It was pretty cold up north so everyone needed to bundle up and dress warm. After 4 hours of snowshoeing up the ski hill, my fingers were bitter cold. I desperately had to stick them down my pants between my outer layer and thermals and wiggle them around to get the sensation back in them.

Merrie and Pedro dress in many layers to keep warm on the mountain. The day we went back I think the temp was 15 degrees. Pedro wore 4 layers of pants!!!!

Coat/Jacket: http://www.signingsavvy.com/sign/COAT/81/1

Warm: http://www.signingsavvy.com/sign/WARM/5332/1

Rain

2011-01-07T10:10:00.000-08:00

Click here to see how to sign RAIN
All the beautiful snow has melted now and is gone. Therefore we are back to rain in the lowlands of the Pacific Northwest (PNW). However, we still do manage to have beauty that accompanies the rain. When my mother-in-law Cheryl and I visited the Garden'd Lights back in mid-December, we managed to catch a break from the constant rain for most of our visit and then light showers caught back up with us. Even with the light rain, the marvelous displays were still a spectacular sight as well as my lovely model!

Quote for first week of January

2011-01-06T10:12:00.000-08:00

What would you do if you could not fail?
- Amber from Indianola, WA

For me, summit Mt. Rainier of course! Desires also on the list are to reach the crater of St. Helens and stand atop Mt. Adams which you see to the right of Harley off in the distance.

The photos are from one of our last training hikes on Rainier in preparation for Kilimanjaro in late September. It was a good thing because the weather was very different from our July visit and late in the season we were able to experience the cold and wind which occurs on the mountain.

Beauty and Snow - signs for Wednesday and Thursday

2011-01-06T08:34:00.000-08:00

Oops, I got behind and forgot to post the sign for yesterday.

Being a completely deaf person, and late deafened that is, vision is something I thoroughly cherish. While it was pretty emotionally painful and a tough hurdle to convert from being a fully hearing person to becoming entirely deafened, the experience has greatly enhanced my sense of visual wonder. I am very often enraptured by the sights surrounding me. It can be totally sureal at one moment as if I stepped into the Wizard of Oz going from black and white to brilliant color. Or the beauty of sight can be so heavenly and move me so deeply that I could almost cry.

The story about the photos pictured here......

Every year during the holidays it it tradition for me to visit the magical light displays created at the Bellevue Botanical Garden. I enjoy them so deeply that I must confess I would feel a little emptiness during the holidays if I missed them. My other great joy is to share them with special friends and family. What is greater than sharing your love of life with others?

Because the lights are so amazing, I will continue to post these cool pictures as relevant to different signs. For today, I will just give you one to build up your anticipation.

The other photos our from our outing in the mountains on Sunday. On the way back down, we were walking towards the sun which glistened on the blankets of snow. Not being the best of photographers, I don't have the technical skill to capture such incredible beauty. The snow was sparkling like diamonds!!!! It was breathtaking and mezmorizing at the same time.

So the signs for today and yesterday are

Beauty (also the same sign for beautiful and pretty)

http://www.signingsavvy.com/sign/beauty

and

Snow

http://www.signingsavvy.com/sign/snow

Water - The Essential Ingredient of Life

2011-01-04T13:53:00.002-08:00

Click the following link to see how to sign water:

http://www.signingsavvy.com/sign/water
Note - It is not exactly clear in the annimation so I will tell you exactly how to sign "water". Form the letter W on your dominant hand. Your pinky and thumb should touch each other while your remaining 3 fingers point up resembling the letter W. Keeping your hand in that formation, bring your hand toward your lips with your pointer finger gently tapping the middle of your mouth.

Water is a priviledged luxury that we take for granted in developed countries, most especially in areas where water is abundant. In third world countries such as Africa, Mexico, and Central America, bottled water MUST be used for everything which comes in contact with your mouth including brushing your teeth. (I have a horrible story about when I forgot to close my mouth while showering in Mexico and became FRIGHTENING ill).

Everyday we went through a few big bottles of water as you see here (that is Harley at the breakfast table of the Dik Dik hotel). Kilimanjaro is the main bottling distributor in all of Tanzania - or at least the areas of the country we visited.

On Kilimanjaro, they add purification tablets to the water and we are instructed to bring powdered drink mix to make it taste better. Every night the porters collected everyones bottles and hydration pack to fill for the day ahead. For this reason, everyone has their name marked in permanent ink to avoid a mixup. From what I remember, breakfast drinks on the mountain were juice, coffee, or a special vasoconstricting tea which they also served at short breaks during the hike.

The other 2 photos are from our venture in the Cascade Mountains of the Pacific NW where water is in endless supply and yearly there is even a period of flooding in the valleys.

Winter "fun" - first snowshoe outing of the year!

2011-01-03T23:44:00.001-08:00

Yesterday was another absolutely gorgeous day in the mountains! I got Harley snowshoes for Christmas so we took the opportunity to try them out at Gold Creek snopark in the Cascades. Snowshoeing with the dogs is always a "fun" pastime we enjoy.

The sign for the day is "fun".

Click the following link to see how it is signed.

http://www.signingsavvy.com/sign/fun

Mountain and Sunday - signs for January 2nd

2011-01-03T01:59:00.000-08:00

I chose to end 2010 and begin 2011 by savoring one of my ultimate loves that brings me great joy - the mountains! Thursday was an absolutely gorgeous day where one of my hiking friends and I were able to escape into the winter wonderland of the PNW for some cross country skiing. Sunday I had the special treat of being with all the pleasures which bring me great joy all at once!....the dogs, the mountains, and snowshoeing with Harley.

The signs of the day are

"mountain": http://www.signingsavvy.com/sign/MOUNTAIN/1874/1

"Sunday": http://www.signingsavvy.com/sign/sunday