Happy Belated Valentine's Day!

Harley with the Tour De Mexico - a bit of everything

Me with the smoked pecan salmon atop mashed sweet potatoes - Delish!

Harley and I on the deck in front of our cabin

Valentine's evening was really pleasant after a good afternoon of hiking around with the dogs.

We ate at the Desert Fire in Redmond which was absolutely fantastic - from the drinks and appetizers right down to main course! Desert Fire specializes in south western cuisine.

To check it out, click the lighthouse link in the post title. For more photos click the link to my picassa web album:

http://picasaweb.google.com/RebeccaDufek/DinnerAtTheDesertFire

Wandering Around the Tiger

Yesterday was a lovely afternoon. Therefore my sister, Harley, the dogs and I took the opportunity to venture around the moss covered and fern blanketed forest of the lower Tiger Mountain trails.

Before losing my balance ability I never explored these trails because I thought it was too easy. I was always too busy seeing how fast I could reach the Tiger Mountain summit at 2,522 feet. Now however, these trails are a new welcome adventure for me

We wandered around for a litte more than 2 and a half hours until it was nearly dark. We started out on the Tradition Lake trail, then went around the lake which is another trail, came out at the Puget Power trail and went on another that led to Poo Poo Point and the High School trail. Although I was really tempted to try making it to Poo Poo point which headed uphill, Harley talked me into my senses at the late hour and we headed back to the Puget Power trail crossing. From there we headed the opposite direction and hit Ruth's Big Tree trail, the wetlands trail and then I am not sure as it was getting too dark.

The crushed gravel was nice to walk on but as we ventured out we traversed trails with slick boardwalks, and big slippery rocks and roots in the way. Before I would have stepped over them without even thinking about it but now that type of terrain is a challenging obstacle course leaving me to move at the pace of a snail! Nearly the entire time my eyes are fixated and focused on the trail beneath my feet.

After a couple hours of hiking around concentrating so hard, the daylight fading away, and double vision or just skewed vision setting in, the task was not physically exhausting but mentally. Sooner or later my brain and eyes could only handle so much and I began to stagger all over the place. Keep in mind how easy I would have found these trails and even ran on them before. I miss those days.

But alas, it is doubtful I would have ever explored them had nothing changed. Remember that I had a one track mind of pushing for the summit and often skipped the regular route to take the shorter but steeper and harder cable line trail shooting straight for the top instead of switchbacking

Despite the frustration near the end (which at times I had to hold back the tears welling up from my grief over an invincible mountain self now gone) I enjoyed getting out into the damp mossy woods. I hope you enjoy the pictures as much as I love being here!

My picassa album can be viewed by clicking the link below.

http://picasaweb.google.com/RebeccaDufek/WestTigerMountainTrails

Tis Begun

Well the steroid taper is starting to take effect with some withdrawal complications. First it began about a month ago with being more tired during workouts at the gym. It is amazing how great I felt at first going on them compared to without back in early December. Activities which exhausted me (such as the stairmaster) all of sudden became easier and I could increase the level and not be panting for dear life by the end of the 15 minutes. I was also able to increase the amount of weight I could lift and take advantage of that.

Currently I am still lifting a good amount but I had to slightly scale back a few pounds or not do as many reps because my muscles are getting fatigued faster. I am also sore today which I have not been in awhile. Although I did not take a day or two off last week, I did 2 days of hill walking, did my leg weight routine on sunday, and then ran yesterday with the final portion going uphill. I guess it is time for a break. But it is supposed to be nice this afternoon. Perhaps I will take the dogs to the dog park.

Other than having more fatigue during workouts I have been getting nauseous in the morning or throughout the day and the headaches are starting. Today is like the day I had a month ago when I missed water aerobics. I just don't feel good. I woke up a little before 7 am incredibly nauseated with a headache. I was having a bad dream that I was in college and was pressed to finish these caculations I had no idea how to do.

When I get sick or have a headache in my sleep it manifests itself into an unpleasant or uncomfortable dream until I wake to solve what is really going on. It is interesting that happens. In Mexico 4 and a half years ago I picked up some kind of bacteria which hit me while I was sleeping. I had a dream that I was scuba diving and got a bad case of decompression sickness. When I finally awoke I was sweating, my body hurt, and I was running a temperature of 104 degrees. It was a pretty bad illness which lasted about 3 weeks so at the time I don't know which would have been worse...getting bent or suffering through what my sister calls "Montezuma's Revenge".

So in any case, I am sick again today. I have to force myself to be awake because I have too many things to do today and it is supposed to get nice out this afternoon. Lying down and keeping my eyes closed gives me relief but I have already gone back to sleep 2 or 3 times this morning. It is time to stay awake and get through it.

The headaches have also begun and I had a bad one last Friday at 4 am which I had to get up and take pain reliever for. It took a half hour to kick in so I could go back to sleep for a couple hours before waking to go on the Friday morning walk with my sister and TSNW.

Usually the nausea is accompanied and probably caused by headaches. Sometimes it takes me a little while to realize it like this morning as I was focused more on the feeling of having to vomit. I got up and took some antiacid tablets and pain reliever. The area of the pain is concentrated in my sinuses, around the eyes, and frontal part of my head.

As for the weakness/blackout spells, I have only had two which were mild. There was no "going black" of my vision and I did not collapse. There was only the light headedness and tingling and weakness feeling in my arms and legs. The second one, which happened a day or two after the first, was more mild.

This is all pretty normal for me when going off the steroids (or tapering). I am waiting it out and keeping an eye on it. The withdrawal so far is not that bad and more spanned out. In the past, side effects were more immediate and became to the point I could not function when going off. When I finally did go off in spring 2005 I felt like I was runover by a mack truck! So this is not so bad. I just have to hang in there and make it work.

Splashing Again

written late Monday evening after 12 am (Tuesday morning)

FINALLY, after a month without, the water aerobics has worked out for me! The week after my first return post surgery I was not able to go as I had a weird nausea all day that caused me to slum around the house taking repetitive naps for relief. Then the following week our furnace broke when we had a rare frosty cold spell below 32 degrees. With the frozen wonderland outside and the need to bundle up and drink tea inside, I was not exactly jumping for joy out of my warm bed in the morning to undress and jump in the pool!

Ok, so the following week I picked a new day - Monday instead of Wednesday. Wouldn't you know it snowed that morning? Still, I anxiously put on my suit, put the truck in 4-wheel drive, and made my way into town and to the gym (this is the midwest yooper in me coming from where it has to be 40 degrees below zero or dumping so many loads of white fluff that the president declares a state of emergency before they close school). So I drive down there with the pretty 4-6 inches that blanketed the landscape only to discover that all classes at the gym had been cancelled due to the weather.....water aerobics included.

"Oh dear", I wondered. I was already wearing my suit under my outer clothes and ready to jump in. Therefore, I figured I would still go in the pool and find something to do. I could not swim laps because I didn't bring a face mask or goggles. Without them I cannot swim unless it is the dog paddle with my head held above the water because I have to be able to see to keep from getting vertigo and becoming lost in direction.

LOL I thought I would kickboard around seeing as my head would not be in the water, I could see, and there would be no fast jerks of turning my head to disorient me. HAHA..easier said then done! At first I had it in my mind to kickboard 10 lengths of the pool (from end to end). However, on my third pass I felt as productive kicking as I had been in the whipping current we were trying to swim against on the surface of Horseshoe Bay in Canada while diving years ago. (For those not familiar with the sound waters of NW Canada, they have some of the strongest surface currents around. When we got caught it it we were kicking in place and only noticed when we got tired, stopped, and found ourselves being pulled the opposite direction while we rested.) I got to the middle of the pool and was kicking my little heart out but there seemed to be an imaginary magnetic force between my body and the pool which was holding me in place.

After feeling frustrated by moving an inch a minute it seemed like, I stood up and gave myself a good push forward off the pool bottom. CRIPES! At the speed I was going it would have taken me a good 20 minutes or longer to do 10 lengths provided my calves did not cramp up from exhaustion! Thus, I decided to cut it down to 4 and I opted for the easier running of 30 lengths in the pool followed by one lonely kickboard lap to make 5.

So the two final weeks of January did not workout but I was ready again to try another attempt on Monday February 4th. Sunday night while at the gym, I learned that some kind of remodel project was going on and that the gym would be closed Monday morning and thus the pool also and class cancelled.

Well that was just too long to miss. The only other day where I could attend the class was Thursday night of last week. Fortunately it panned out and then this week we are back on regular schedule as I attended the class this morning.

I like the water aerobics because I can do things in the water that I would not be able to outside of the pool. The high jumping is GREAT because I have no worries about falling and hurting myself on the hard ground. When I go my goal is not an aerobic workout but doing my best to maintain a sense of balance with the waves swashing around me from the movement of the other people.

The Three Graces

This evening I did not get home until close to 5 pm and it was drizzling. If it weren't for my dogs wagging their tails excitedly when I pulled in the driveway and their begging puppy dog looks I would have srcaped the walk today. But no. I tried to change quickly and get out the door before all daylight was lost.

Knowing that it was going to be dark soon, we headed to Daniel's Ranch neighborhood where there are street lamps and also driveway lights at many of the houses. We started our walk at 5:35 pm but fortunately with the days growing longer it was still light out for half of our walk.

On our way up the hill we saw our lovely gentle friends again, "the three graces", which are the does we saw last week. This time they were further out in the middle of the neighborhood where I had not seen any deer prior. We noticed them and they noticed us but still casually strolled along. We followed them up the hill slowly until they meandered into the woods and could no longer be seen in what little daylight was quickly slipping away.

Had it not been for my need to walk the dogs, I would have missed our beautiful brush with nature. Further, with the late hour and darkness approaching, I rationed that the neighborhood was our best option to walk in for a full hour. As such, I pushed myself to get in another day of training for the climb by going up and down the hill 3 times.

Gracing Us With Their Presence

Yesterday I took the dogs for the walk closest to our house (Daniel's Ranch). It is a good place to walk not only because it is safe but also because it has a giant hill I can go up and down. When I trained for the Seattle marathon in 2006, this neighborhood and hill was part of my strength training regimen. Thus, it is good walk to incorporate into my training for the Big Climb of Columbia Tower skyscraper in March. We climbed the hill up and down 3 times within an hour.

On the second pass down the hill we were blessed with the lovely sight of a graceful doe grazing on the patch of lawn between two houses. The dogs behaved very well and the doe went about her business.

As we gazed at her gently wandering around taking the most proper of steps like a queen, we spotted another one in someone's driveway a few feet away. Both of the deer casually strutted into the yard and we saw another one slowly passing through the sapling size trees until it emerged.

What a wonderful treat!

I am a very visual person and take great pleasure in natural wonders. I have been blessed with many astonishing sites here (rainbows, wild flowers and poppies, sunsets, etc.) that at first I felt was a shame I did not have my camera. But then I realized that the sites were wonderful gifts meant for me to enjoy as it is instead of worrying about how to best capture it.

Just a few days ago we spotted a majestic great blue herring rise from the pond where I had previously seen a beaver playing in the water. Life is just grand!

Nice Run

Today is my running day. I was feeling very off today and seriously debated several times whether I should go or not. It was one of those days where I really needed to motivate myself. I opened the front door several times to check the weather and see if it was still drizzling or if it cleared up. Each time of course the dogs were excited thinking I was coming out. With their urging and standing there at the front door next to me I just could not say no. So I took their collars (electronic invisible fence collars) off and moments later I almost put them back on and did not go.

Finally I got myself out the door. The forecast calls for rain the rest of the week and I have other things scheduled that I need to do. Going for a run on Redmond Ridge is much closer than driving all the way to Redmond to go to the gym. Further, I could take farm roads to get there which are less busy at that time of day (4:30 pm). The past couple days I have felt slightly strange while driving like the road is not big enough and that I am going to have a head on collision with on coming traffic. Out in farmland/rural land there is less need to worry about oncoming traffic and concentrate so hard.

So I went to the Ridge. I am glad I got out because doing the run actually made me feel better. Maybe it is just the fresh cool air. In any case I ran a little further this time and was just seconds shy 30 minutes.

The trail was nice with all the snow, slush, and water gone (pleasant fairly level crushed gravel trail through the woods next to Triology golf course - trail that passes Kari's bog which I posted a picture of on here). It is part of the King County Regional trail system that runs along the south side of the golf course. Then it exits west of the golf course and meets a nice wide paved path heading east back towards the center of the golf course (divided in half by a residental road passing through it).

The last portion where the paved trail is, runs uphill whereas the rest of the trail gradually heads downhill. This makes for a challenging end to the run as I am tired by then and have to work harder to finish. So when I tell you about "earning the pants" I really mean it as I have to push myself toward the top of the hill. LOL

My guess is that the route must be about 3 miles. When I began running cross country in high school the longest it took me for a 5 k was 31 or 33 minutes which included walking up a skihill (they are much smaller in Michigan - mole hills compared to here) because I was too out of shape to run up it. The fastest I recall running that distance was about 22 or 23 minutes (I have never been a stellar runner). Therefore, I figure I am right on target. One of these days I will wear the pedometer which I have been forgetting to wear for over almost 2 years! LOL

My vision was not as bad this time as when I ran last week. In case any of you were freaked out that I would be driving around with double vision, know that it dissipates after a few minutes. When I finish running I follow it by a 20-30 minute brisk walk. Today we went on a new route (golf cart road) following the run that continues around the north side of the golf course and past the homes that line it.

Seeing as it was after 5 pm and getting dark and had been not an ideal day for golfing due to the drizzling weather, I did not expect to get run over by any carts zipping by. The road (path) is off limits to anyone not on a golf cart so I thought this would be a great opportunity to explore something new that normally is prohibited. Surprisingly there was still one die hard golfer on the course but he was walking around toting his clubs instead of driving a cart.

In all it was pretty nice. The rain had stopped and it was 44 degrees. This is really perfect for me as I hate running in hot weather. I like it when it is cooler but not too cold - just right where your lungs don't freeze and just plain comfortable. Further, having it be wet out allows just enough moisture to keep one from getting thirsty or my eyes from drying out. :o) SATISFIED

Not Again

I was sitting in my egg chair reading the grocery ads as they expire today when I stood up to throw them away and the "feeling" returned. I am not sure how to explain it except for as a head rush when you get up too fast in the morning. Basically I felt flush, my extremeties tingled, and I had to stand there for a moment until it passed. There was no blacking out of my vision or falling down.

I hope this is just a one time occurance and related to something else not serious as I was really looking forward to going off the steroids and my body finally getting on track (no more papilledema, no more blood clot in my leg, no more steroid withdrawal, and no more need to take steroids due to swelling or adrenal gland insufficiency).

I have been cleaning my office this week and came across a calendar from 2005 that I saved because my medication schedule was written in it and I needed to record it yet on the computer. Boy did I have a hard year in 2005. What a doozy! Last year really was rather simple compared to what I went thru back then. Just to give you an idea, I discovered that the highest dosage of steroids I had been on was 80 mg! Currently I am on 1/2 mg. Big difference eh? No wonder I had such a horrible drug withdrawal after stopping them that spring!

Also, throughout the weeks and months is written several times "restarted the steroids" and "steroid taper". I just could not get off of them as the tumor continued to swell pressing on my brainstem making me sick and dizzy.

Now my problem is the opposite. Instead of needed them bring down the swelling of the tumor so I would feel better, I need them because my body is not producing its own natural levels. Hence the weakness episodes. It is dangerous to not have enough as it hinders the body's ability to function. Wierd, eh?

I just hope this is not going to happen again. I felt a little strange after taking the steroid this morning and the recurring symptom happened within a half hour. I have been on a taper (lowering the dose slowly) for about a month now. My doctor originally planned 4 months but I pleaded to get it cut in half. Since I had been taking steroids since the surgery it looked like we could try it out.

Anyhow, I have already taken lots of steroids within the past few years and I will need to take them again after the next surgery. I am getting tired of being so drug dependent and also having adverse reactions to certain drugs. I need a break from them. For crying out loud I am only in my 30s and have had more drugs pumped through me than someone who is in their 50s! How long can someone take all these drugs before the body just cannot handle it anymore?

Please let this taper do the trick so I don't need to take them until the next time around. I am becoming like a diabetic needing insulin with the steroids.

Sloshy Run But Earning the Pants!

I had to take a short resting period from running to nurse a chest cold. The week before last I hit the trail again with my sister up on the Redmond Ridge. For some reason I really enjoy running on that trail. We ran for about 10 minutes and then stopped at Kari's bog before continuing along the trail for another 15 minutes. It was my first day back in a couple weeks but felt really good.

Feeling stronger since healing, I went for another run last Tuesday non-stop. It had snowed about 4 inches on Monday but had mostly melted at our house so I thought it would be okay to take a run on the "Ridge" which is a little higher elevation. In the lower Carnation Valley the Snoqualmie Valley Trail would be too muddy yet and I hate getting my shoes full of mud and horse dung.

I was a little overly optimistic about the condition of the trail as there was still a good deal of snow up there. That would not have been too terribly bad if the snow was dry but it was a slushy mess the consistency of a shake and not harder like a snowcone. The sidewalk to the trail was covered with wet slush and slippery. Thus I had to be very cautious of my footing.

Once in the woods it was also a sloppy mess but at least the gravel beneath offered more traction than along the sidewalk. My shoes and feet became thoroughly drenched as the running shoes I wore were not waterproof.

I was pretty proud of myself for handling it well. In fact, I became overconfident dreaming of bragging for not falling when just then I took a minor spill. Still, despite the sloshy trail, soaked feet and double vision which happens when exerting myself I was feeling pretty fine.

I had in my mind to "Earn the Pants". This mantra of mine is from an earlier post when I splurged on a new pair of running tights. In order to feel like I deserved them I need to run a certain distance. When I reached the point where I consider I have "earned the pants" I was surprised that it only took 29 minutes through slush, double vision, and a spill! My goal was 30 minutes and somehow I remarkably shaved off a minute under less than ideal circumstances.

COOL! Way to feel satisfied and proud of my effort!

The Dune

The "dune" at Cape

Kiwanda State Park in Pacific City Oregon on the Pacific Coast

Above are a of couple photos of the giant sand dune I climbed a just a few weeks before my surgery. Below is posted my recent blog entry on my blood cancer support events website.

http://360.yahoo.com/bluediverbeck

Well I am back! My fundraising page for this year's Big Climb of the Columbia Tower in Seattle will be coming soon. For those who don't know, I had my first brain surgery in September (2007).
While in the hospital I had double vision and was very weak. The first couple days out of bed I was afraid to use the stairs because I could not see the steps accurately and was terrified I was going to take a bad fall. On the last day there I braved tackling the stairs with Harley, my sister, my mom, and the physical therapists by my side. When I accomplished a few steps and everyone cheered about what a good job I was doing, I half jokingly asked the therapist if I would climb the Columbia tower again.
Then I went home to discover that first weekend that a "save a date" postcard for the Big Climb had come in the mail. This year's climb is on my mother's birthday. Right then and there I determined that this is something I must work toward and do. I thought it would be a nice gift to make a come back and show that I can persevere. It also provided me a motivational incentive to work toward my recovery, and great way to honor the memory of my grandfather who passed from a blood cancer, something to dedicate to my friend Skip struggling with chronic leukemia and an opportunity to help my fellow blood cancer survivors.
The photo you see pictured is of the giant dune at Cape Kiwanda state park in Pacific City, Oregon. I have always been drawn to climb to the top to get the fresh perspective and view it offers. Immediately when I came upon the dune I desired to conquer it.
Fortunately, the soft sand of the dune is safe for me if I fall as I have lost most of my balance function through my battle with Neurofibromatosis. I am limited now (as of 2004) by what I can climb due to the need for safety but seek out opportunities to do what I can such as climbing things like the dune.
This dune was a very important symbol for me. I was unsettled and unsure of how things would go in the upcoming surgery I had 2 weeks later (moved up a whole month due to complications I started having). OK. Let's be honest......I was pretty freaked out of my gourd and had many somber episodes, thoughts, and reflections on my life. In my mind, I felt that if I could conquer this small hill, I could also pull through this brain surgery.
It may look really easy but that I assure you it was not. My dad and I climbed it and the sand was so deep and hillside so steep that we had to scramble on all fours. Half way up the dune my lungs burned and quadriceps ached.
I thought of my friend Yumi who had just accomplished her first summit on a second attempt of Mount Rainier. I recall her telling me how the last thousand feet killed and how fatigued her leg muscles became. I also thought of fellow blood cancer and Hodgkin's Lymphoma survivor Sean Swarner who attempted Mount Denali in Alaska 3 times before completing his trek of the highest summits on each continent to honor those with cancer. After feeling defeated by the mountain on previous tries and with heels rubbed raw, he reached the top of Denali.
I thought of them and what they went through and how they never gave up. So when my legs started to burn and I could see how far it was to the top, I thought my challenge was really miniscule and easier compared to what they went through.
When I reached the top I felt an overwhelming sense of satisfaction and accomplishment. If I could make it to the top of this dune, then I could bear what lay before me with the surgery and make a comeback.
It takes me about 15 minutes of sweating, heart pounding, and muscle aching to reach the top of the tower. In essence though, that is really nothing compared to the weeks, months, and years cancer patients endure through treatment. Reaching the top is an exhilirating experience and so is reaching a remission and each year of remission that passes by. This year I will have made it to my 15th year of remission and plan to paraglide off Tiger Mountain. My contribution in the Big Climb is in the hope that other blood cancer patients get that spark and opportunity at life that I have enjoyed.

Ravenous

Ravenous....that is how I would describe my current week. I don't know if it is an effect of working out or that the long course of steroids have caught up with me. This morning when I awoke I could not wait to eat breakfast even though I ate a very late dinner (10 pm - turkey breast, gravy, mashed potatoes, green beans, stuffing, and an orange).

Prior to dinner yesterday I took the dogs to the park (we lost Jake for awhile) and went to the gym starving. I had not brought any snacks with me (usually a yogurt smoothie, cheese stick, and celery). I had already consumed my smoothie and cheese stick earlier in the day.

Lately I have been craving a lunch for breakfast. eating things such as teriyaki when I first wake up. My desire for my morning oatmeal has become lackluster. Usually I put a yogurt in it or have it plain with soy milk and raisens. Yesterday I prepared my oatmeal with a tad bit of brown sugar which I never do and some chopped almonds. Craving protein again, this morning I skipped it all together and opted for a cheese and sausage lean pocket, a yogurt smoothie and a granny smith apple.

I probably ate about 9 am and by 11:30 I was so hungry again that I was getting nauseous. I went for a walk with Harley and the dogs. I told him we had to walk really fast so I could hurry up and get back to eat.

After a nice turkey burger spinach salad with chopped cucumber, celery and red pepper accompanied by a warm bowl of roasted red pepper tomato soup (sprinkled with mozzerela cheese and broken pita chips), I became ravenous again an hour later. This time I quickly scarfed down 4 cups of lite kettle corn (maybe I was excited to eat it as I have not been able to swallow popcorn for a few years). I also made myself a nice warm and delightfully tasty Oregon Chai tea latte.

I could go for eating the whole microwave bag of kettle corn and some more tea but I decided to chill out and write this post. What is going on?

Back in 2004 I remember the doctors saying to be careful with the steroids as they can make you really hungry and I remember going through that phase. I was told to watch what I eat and choose wise foods to snack on.

From what I think I can recall, the side effect was more immediate. Of course I was on a higher dosage (4 mg) back then than I am on now. I have been on steroids again for about 2 months and I have another month to go. What happened is that for whatever reason, my body chose to stop making the natural level of steroids and I was suffering the effects of going into renal gland insufficiency (blacking out and weakness spells).

So....as I think I mentioned this in a previous post, my general internist has put me on a regimen of steroids in an attempt to get my body back on track. The dosages are much lower and the peroid I have been taking them is longer and more gradual compared to what I was given after surgery.

We may have hit the "sweet spot" this time as other than the recent hunger (which could be from something else), I am doing pretty good.

A recap -

Third time with the steroids since surgery

This time the taper schedule is:
2 weeks at .75 mg
2 weeks at .5 mg
2 weeks at .25 mg (which I start on Wednesday)
2 weeks alternating .25 mg every other day
Stop

I don't seem to be suffering the other undesirable side effects so I am guessing maybe it is balancing out and replacing what my body should have been making. Hopefully when this steroid course is over I will be able to get off of them until it is time for the next surgery.

Sunny Day on the Snoqualmie Valley Trail

Pond north of Carnation along HWY 203 and the Snoqualmie
Valley trail.




View of the Cascade south of the Stillwater area along the Snoqualmie Valley Trail

I took these photos on January 23rd during the nice week we had here. The c0mplete set I took from the Snoqualmie Trail in Carnation can be viewed by clicking on the lighthouse icon in the post title. I made nice captions explaining everything this morning but unfortunately all my work was futile as I did something which erased everything....COMPLETELY FRUSTRATING!

Anyhow, I am having a difficult learning moment. I cannot even figure out why my text in this post is pulling to the right and not on an even margin so sorry if this is awkward to read. I am unsure how to fix it. It is really annoying to the point I think I might have to walk away from the computer for awhile to do something else.

Welcome Back John Hancock!

Well my signature is not as pretty as that of the legendary John Hancock's on the Declaration of Independence but at least I have the ability to handwrite fluently and legibly now. I am right handed and the surgery was for the tumors on the right side of my head. As a result the muscles going down my arm and shoulder and nerves had been weakened. After the surgery it was so incredibly difficult to to write! I just absolutely loathed having to sign my name after a credit card transaction. Fortunately I have a card with my picture ID on it as there is no way my signature appeared anything resembling how it had looked on the card.

Aside from my daily documentation of meds taken and progress for the day for the first weeks after coming home, I did not write anything. I really had to force the pen to paper and it was as equally frustrating as it was exhausting. When I look back at my notes it really does appear as chicken scratch from a very arthritic person. It is amazing I was able to make it legible at all!

What I found is that it takes time and work in strengthening the muscles. One month after surgery I started going back to the gym and doing some light weight lifting. I brought a binder to track my progress in. After doing some weight work on my arms I found writing easier than before I lifted anything. I also did some exercises for my hand and wrist.

Since getting approval to use the weights freely and increase the amount, I have noticed significant improvements. As mentioned earlier in the blog, I have had to be on steroids again as of early December. Thus I have taken advantage of this opportunity to lift hard. (still relatively light for some people; I am not a she hulk person)

There is a slight involuntary quiver in my right shoulder at times in the evening while resting. However, 3 and a half months post surgery I have found my handwriting to return!

I really avoided writing and did not want to so for quite some time. Oddly my typing was not affected on the ergonomic keyboard aside from the days when my fingers felt kinked and hit weird buttons that erased all of what I had just typed. I was able to type out the yearly newsletter but needed to sign our names on the Christmas cards which I totally did not look forward to. Slowly I managed the signatures for the cards we send to people far away and offline and then I made ecards to send via email to those here and online.

After Christmas I wanted to get notes out and I also had thank you notes to write from people who sent flowers and helped out before and after surgery. So if some of you are surprised to get a card from me this month that is why. I just sat down one day a week or so ago and could write! It was so exciting that I wrote them all out in a couple days! The task was no longer daunting!

Also, Thursday was my first appointment at the Casey Eye Center at OHSU in Portland. Because it was a first visit, I was required to fill out the medical history questionaire and form. They had mailed it to me but I forgot to grab it off the table before we left the house. Therefore, we arrived without it and I needed to fill it out there. Prior, the situation I would have as been as enthused to do as I would be about doing wash (I hate doing laundry) but surprisingly my hand just took off completing it in record speed (we were late). Granted it was not the neatest job but the fact that I was able to fill it out so quickly and that it was readable on top of that provided me a secret sense of pride.

Happy 33rd Birthday Harley!

Harley with his favorite black forest cake. We only had one candle with the number 3 so the other half of the number 33 is composed of 3 candles. Taken January 19th, 2008

Yesterday was Harley's birthday (my number 1 supporter). Often when one has an illness or conditon he/she gets all the attention but really it is the loved ones who endure a good amount of the grief, work, and worry. Like a secretary to the president, Harley takes care of many of the things behind the scenes to get us through. Not only did he need to learn another language (sign language) to communicate with me, but he has also spent countless hours on the phone coordinating my medical care while I have been unable to, making followup appointments which are difficult for me to plan over a relay system, handling all insurance and billing issues, implementing changes within our home to accommodate the obstacles I encounter and to provide more organization, driving me to appointments here and out of state, and providing the tools and resources I need to adapt and pursue my interests. All at the same time he acts as an emotional shoulder during the ups and downs while taking care of his own needs and career.

It is a huge job that many people would not be up to task to take on. In fact, there are some people who would see it as too much of a load and burden which would be easier to walk away from.

I am extremely lucky. I often think of what life would have been like without him. It is a scary thought. I basically would not be the person I am or where I am today. It would be very hard to do all these things alone and I honestly cannot imagine anyone who could have been more perfectly suited.

So thank you Harley for all your love, encouragement, acceptance, and support. You are very much appreciated and I often thank God for having been so fortunate to have you in my life! I hope you had a wonderful birthday and have many more. You deserve it!

Taking a Hopefully Short Break

Alas at the time of my last post I was right. I was unsuccessful at warding off the bug of the season. Thursday morning I awoke with the full on chest cold and had to cancel my walk with my sister. I took the day off from the gym too and did not go anywhere.

Since then I have been improving but there is still a wheeze in my chest. I have been downing vitamin C, a multivitamin, echinanacea (both the tea and the supplement), Immune Fizz drink, cough syrup, and eating oranges daily combined with theraflu cold for the first four days. I have to boost my immune system as much as possible to fight off any infections as I will be on steroids for 2 more months which weaken my immunity.

So far my precaution and efforts have paid off and I have been able to return to walks with the dogs and the gym. Friday we went to the dog park, Saturday I went to the dog park and gym, and then Sunday was a beautiful day where I felt up for taking a hike with our dogs and my sister on Squak Mountain. Yesterday it rained all day and then snowed so it was another day off from walking and the gym.

Coupled with the wheeze in my chest and snow on the ground (too slippery for my footing), I will have to hold off on running for a bit and restart my training when my lungs are clear.

I also missed the body vive class the day I was sick and then this Thursday we will be going to Portland for my eye appointment. Therefore, I will not be able to try it out until next week.

The snow is still on the ground but it is an absolutely beautiful day where I just cannot let it slip by without a walk. Even the wheeze can't keep me inside for long. ;o)

Splish Splash

Today is the first day I have returned to the pool and water aerobics class in at least 4 months. It had been so long that I forgot my water shoes and the balls of my feet ached everytime my foot impacted the pool bottom.

Overall it went well. Part of the reason for such a long absence is not because I did not have doctor approval. In fact I was given the permission after my first month follow-up. With the weakness in closing my right eye and the burning/scratching irritation I was having, I thought being in the pool would aggravate it more. Further (LOL), I have not been behaving well since surgery and have been on a eat anything that tastes good food fest which included pies, cookies, chocolate truffles, rum cake, etc.. Thus I gained that weight I lost from not being able to eat in the hospital and then some. I am a few pounds more than I was when I went in. My hope was to get a new swimsuit but in the winter season I have been finding the selection rather slim.

I have not found a good suit yet. Where are they when you want one? But today I decided time is flying by and I can no longer use that as an excuse. Therefore I put my old one piece suit on that is slightly falling apart at the side. The class is not a Miami Beach bikini contest so nobody would probably notice anyway.

As I had mentioned earlier in my post about running, my legs have really gained strength and stability. Starting off today seemed just right as I didn't experience any muscle weakness or quivering in my legs (aside from my sore feet because I forgot my shoes). My balance seemed improved too when we did the stretching exercises at the end. I was able manage standing on one foot while moving my arms around in the water.

One difference I noticed however is that water leaked through my nose into my airway. In the right nostril it is weakened and I do not have the ability to fully seal it off at times. I did not notice this in my pool sessions prior to surgery so I am not sure what I can do or if I can do anything to improve it. It was not a huge problem but it does make me wonder if this would occur when I return to lap swimming.

The other issue of course was the eyes. I definitely had some eye movement problems going on where my vision was "shaken up" and it was hard to see what the instructor was doing at times. I do not really know how to describe it except for that maybe it is like if you tried to focus and see something after spinning wildly around in circles.

Even with the weight I have gained I am not an easy floater still and on certain exercises I slowly sink under. Hopefully that means that I have gained muscle mass more than my lack of technique and skills.

I did get a little nauseous afterward and had a weird headache. However, Harley has been ill and I think my immune system finally gave in to his bug this morning as I was not feeling too great when I woke up. I did not feel really well in the afternoon either (fell asleep in my truck when I got home from taking the dogs for a walk) but I am feeling ok right now.

I am going to try another new class (Body Vive) at the gym that focuses on strength, balance, and body core. With that, the running, the weight lifting, the stair master training, and walking the dogs, I will probably just fit in one water aerobic class a week. It did feel nice to be back in the water though. I am hoping to continue improving my leg strength and balance with the water aerobics, Body Vive class, and BOSU practice so that I will be able to handle wearing dive equipment again.

Let there be light

Early Monday evening we went for another run. I am thrilled that it is starting to get lighter out. We went to our regular trail out in Carnation that we have not been walking on for the past couple months due to how early it gets dark out. We started our jaunt after 4:30 pm and I still managed to see the trail after 5 pm!

In the spring, summer, and early fall we are on the Snoqualmie Valley trail frequently. However, it is an old railroad grade trail in the rural country side which is not lighted by street lamps. As a result, we eventually had to abandon it as it was getting dark at 4:30 pm. I have a habit of going walking in the evenings which works out really well when it is light out. The light disappeared very quickly while I was in the h0spital and when I came home I was stunned and unready for it to get dark out so soon.

No matter! I found a way to adapt. I started going earlier and then walking in areas and neighborhoods which are lighted or have street lamps.

For the average person this would not be so big a deal. However, for me and many of my NF2 counterparts the approaching darkness is a HUGE obstacle! Commonly and very often these tumors disrupt the vestibular system as the nerve that controls balance extends out from the nerve that controls hearing (8th cranial nerve also known as the acoustic nerve) where the main tumors typically reside. Therefore, we often use our eyes and vision to guide our balance function in something as simple as walking as our natural vestibular (balance) system is not working. So when it gets dark out we may have no sense of balance and stumble around like drunks.

Immediately after coming home from surgery I was not quite ready for low light situations and had to work my way back up again. I had taken my dogs and mother for a walk in one of the neighborhoods near my house. We started the walk as night was falling so I brought my headlamp and hiking poles for stability.

Things went well at the beginning when it was not completely dark out. Soon however it began to rain hard and the way down the hill was dark as the street lamp was not working. The falling drops capturing the light of my head lamp danced all over the place disorienting me. Even though it was a couple blocks, the darkness made it extremely difficult for me to be certain of my footing and I slowly and unsteadily moved one foot in front of the other like a person in physical therapy learning to walk.

Fortunately, I quickly moved past all that and learned how to handle walking down a hill again and adapted to low light situations. I don't believe I have used my hiking poles since that day but I have been regularily walking in the same neighborhood and others going up and down hills.

This holiday season has been particularly pleasant for me as I have found all these neighborhoods decorated with lovely and tasteful christmas light displays. The lights create more illumination to guide my balance. I can begin a walk at dusk and as the sun goes down the show begins. On a cold dreary and often wet NW winter day, it warms the soul to take a stroll among the colors and twinkles.

To all those in the following neighborhoods, I greatly appreciate your spirit and the work you have put into creating a cheerful and inviting atmosphere: Daniel's Ranch, Quail Creek, Issaquah Highlands, Redmond Town Center, and Redmond Ridge.

Back to Reality

Friday was my 3 month post-operative appointment in Portland. This time I did not have the long exhaustive list of questions I typed up and I did not do any prep work the day prior. Aside from my insurance card, I made certain to bring the copy of my MRI scan taken on December 21st to the appointment.

I am not sure what I really expected. I guess I just wanted an answer for why I am having intermittent double vision and an impression of my MRI that Harley and I had already looked at.

3 months post surgery, the start of a new year, and I am ready to be done with this. That is the difficult thing with NF2......you are never done with it. Again and again that is hard to accept at times. I was one of the "lucky" ones when I had cancer and it was "done" with. The tumors were gone and I was able to move on and return to life as I knew it before.

With NF2 that is never the case and even more so for someone like me who harbors MANY tumors. It is not like passing or failing a final but taking all the exams in between in a ground hog day cycle (over and over again never reaching the final).

Anyhow, first things first.......What is wrong with my eyes?
We learned that there are other nerves involved with vision besides just the optic nerves (I think I remember the 4th and 6th nerves and I can't recall the third one mentioned). These nerves as I understand now are responsible for eye movement. They are also located where the tumor was and split before reaching the brainstem. During surgery, these nerves get irritated as they are so close to the tumor. Immediately after surgery I had really bad double vision which took a couple weeks to dissipate as the area healed. This was normal. What is happening to me now (small episodes of double vision when reading or trying to read while in movement -a car) will take time to resolve. It is a weakness in the muscles around my eye and also irritation of the nerves controlling eye movement. It sometimes takes 6 months to a year to improve/heal.

My worries about the papilledema I had and if it could return.....I will not know the current status on that until I see the neuro-ophthalmalogist (eye doctor) down there on the 17th. The eye doctor needs to dilate my eyes to be able to look into them and observe the optic nerves. It is unknown on what exactly caused the papilledema as I have so many tumors up there. The surgery would not necessarily resolve that problem. There really is not a solution to the papilledema aside from the medication (diamox).

The MRI
Harley and I looked at the images. Understand that I have experienced two things: cancer (malignant tumors) and these benign yet slow growing tumors. It is still hard for me at times to want to fully comprehend the distinction as for me the cancer disappeared after treatment. That does not happen with NF2 tumors. I know this but get in swept up perhaps in fantasy moments forgetting that.

The point is that we were actually very excited to see the MRI this time and when we saw it our reaction was kind of like "Oh. Sigh. There is still some there. AND That other one looks really big now. Look at all those other ones." Harley was more patient at viewing the images (it is cool technology) whereas a couple minutes was enough for me and I was ready to put it away and not think about it until well after the holidays.

I have not seen the MRI report yet but I was told that it looks good (85-90 % of the tumor was removed and the others appear stable but of course are still there.) In my case the tumor cannot be removed entirely without leaving some hefty damage/side effects.

Then what I was totally unprepared to think about or talk about on my cloud 9 fantasy........when to get the next tumor operated on. I asked that in the last appointment. Apparently I must have still been compartmentalizing the situation as I was able to handle discussing/considering it back then.

This time around not so. I don't know what plane of existence I was on but when the doctor told me they could do the surgery in the spring I was just sort of stunned. That probably is not the right description. What actually happened is that when she said the spring I thought of these things I was planning to do and then like a 2 year old that just had his/her security blanket taken away my eyes started to well up until I could not contain the tears any more. I am not sure if my right eye produced tears but my left eye definitely does.

I got upset like when the anesthesiologist came to tell me it was time to go into surgery. One minute I was fine and the next I was falling apart.

This is not new news. While Harley comforted me he also reminded me that this is nothing I did not know. In fact, this was expected before I even had surgery. It is known that this other large tumor has to be addressed. I have known that and inquired about it for years as we were watching and waiting to see what was going to happen with the first treated tumor.

Really this other tumor was originally planned to be treated by now. If you recall. the right tumor grew quickly in 2004 leaving me with an immediate treatment decision. The plan was to radiate these 3 large tumors over a 2 year period. Unfortunately things did not pan out as anticipated and the first tumor got bigger.

I think before the surgery I was maybe speculating that I could get the second tumor radiated once the other two had been removed and debulked (thinking there was more room if it swelled). Really though, the tumor is too large. It will still be there and pose the same threat as did the other. At this time, the only solution for the time being is to remove as much of it as possible. I don't think I comprehended that point back then as the immediate concern was the current tumor which was larger and causing problems.

So here we are back in a near same place again (worrying about another surgery and tumor). As was before, it is best to get it done while I am strong (especially seeing as I did so well with the first surgery) rather than too late when there are irreversible problems. Yet I am suffering the same grasshopper procrastination as when I went through chemo. It is nice to start feeling good and not want to feel like crap again. As I got stronger through the treatments, it was hard to go back in. Just when I started feeling great it was time to do it again. I had a hard time coming out of surgery immediately afterward that I do not look forward to enduring again.

As I have been doing great in recovery I got on some wild fantasy that I could completely skip 2008 in dealing with any of this and having another surgery. I had the mentality of checking out and taking a vacation from NF2. I am still somewhat in that frame of mind. I told the doctor that I will not even consider surgery until at least the fall when I have my next MRI.

Plans for spring and summer 2008?
A) do some snowshoeing
B) climb the Columbia tower in Seattle
C) improve running to run some 5ks and maybe a 10k
D) paraglide off Tiger Mountain in Issaquah to celebrate my 15th year of remission from Hodgkin's Lymphoma - this is the biggest one that I have been waiting YEARS to do
E) return to scuba - this is another biggie I have been waiting years to do again; in case you did not know, I have been an avid diver since age 19 but stopped in 2004 after the news of the rapid growth of the right tumor which got larger after treatment
F) figure out some way to try rollerblading again - this was also a very big sport for me that I avidly did (completed 4 25-26 miles Seattle Super Skate courses) but have not done since 2004 before the radiosurgery treatment

As you can see, I have lots of plans to which a surgery would put a dent in all those things. I plan to play first - who knows how long that will last? You must seize the opportunity when it presents itself. I have to train to do all these things which would be an added bonus as I have to train, keep fit, and get ready for the next surgery anyway. So that is how 2008 is looking. As my friend Greg with NF2 says "Every day is a training day."

Earn the Pants

I am back to running again. I actually started a few weeks ago for the first time but had to quit after just two runs as the strange weakness episode happened and then I got sick. Wow! I lost a good deal of strength and endurance as my legs felt like jello and quivered.

The first time I made a goal to run for at least 10 minutes on the Redmond Ridge trail which I managed and then stopped at Kari's bog to stretch out. Following the stretching I ran for an additional 9 minutes which was the rest of the trail through the woods and then walked the rest of the way back. The second time I pushed myself to cover the 20 minute distance non-stop.

It does get easier and things seem to be improving quickly as this week I returned to running again and was able to go further and longer. The steroids really have made a difference. In addition, I was able to run three days this week AND go to the gym at least 3 days this week to do my weight routine and other cardio.

I decided to get a headstart on one of my goals for 2008 (run at least a 5k and hopefully a 10k this summer) by running once at the end of December and then again on New Year's day. On the first run (first since early December and 3rd run since prior to surgery in September), my legs definitely felt stronger but my shins and ankles became sore very fast. Even though my shins and ankles continued to burn throughout the run, I was able to maintain a continous run for 28 minutes (stopping only twice as I tripped once and I had to tie my shoe another time).

(Hehe - after that run is when I bought myself the pants that I will explain later. I was really proud to be able to do at least a 25 minute run.)

At the opening of the year of course I had to take a run. If I could do at least 28 minutes then I surely could push myself a little further for 30. Again my shins and ankles were aching. Time to work harder at the gym on those areas by practicing on the BOSU device. I forgot to bring my watch with me but I forced myself further up the hill at the end of the run where I had to have reached 30 minutes.

Today was another good run and upon thinking about it now I don't recall my shins and ankles getting sore. The weakness was mainly in my quads which began to feel like lead as I did my leg weight routine yesterday. I pushed myself to go up the hill again at the end to make at least a 30 minute run and to "earn my pants".

Earning the pants.........

What is that all about? ;o)

Well I have not purchased myself a decent pair of running tights for years. As a matter of fact, prior to this week I have only owned one pair which are from my bigger days and have to be at least 6 years old. Even though the pants are size large I have still been wearing them as they are spandex material which are made to stretch (or shrink) to fit.

Back sometime in 2005 when my balance was at its worst, I was wearing them and tripped as the dogs pulled on the leash knocking me down. Back then the slightest pull could send me toppling over and I had no strength for resistance to pull back. As a result, I slammed one of my knees on the ground ripping a hole in the cheap cotton/spandex material.

The hole was not very big so I have kept them and have continued wearing them with my thermal pants underneath. Realizing that I could use a second pair I finally broke down and splurged on a nice pair of North Face running tights on sale at REI after Christmas. However, they were still pretty spendy yet reasonable and still cheaper than most workout pants and clothes. (Now I remember why I have not bought myself some for so long.)

At any rate, I felt I had deserved them as I had never purchased myself a decent pair and because I waited so many years looking to catch a pair at a thrifty price. Yet, I still felt slightly guilty thinking someone who is a more avid runner or who has run a marathon is more worthy of them than I. Therefore, I came up with the philosophy of "Earn the Pants".

When I have gone running this week (I bought them after I started my running goal early - December 30th), I keep the mentality that I have to run a certain distance and a certain time to be worthy of the pants. It sounds silly I know but so far it has been effective. It mostly comes in handy nearing the end of the run when I finish going uphill which is really hard. At that point my legs really burn and feel like I am running through water and it is tempting to quit. At that moment that I remind myself to "earn the pants". :o)

And We Return to Our Regular Scheduled Programming

I have been absent for awhile but doing well. December was a busy month. After the disappointing "episode" I restarted the steroids. I only felt the weakness for a couple more mornings so for a few days I limited my driving to the neighborhood a mile down the road which is the closest I can walk the dogs.

Just before the "episode", Harley was sick and it was passed onto me as the steroids started making me feel stronger but ironically began to depress my immune system. (I know.....weird paradox there. I was needing the steroids to strengthen my body while at the same time it made me more susceptible to illnesses.) Accompanied with the sinus pressure built up from the head cold I began having double vision again. The double vision was not extreme like when I was in the hospital but it made reading emails and writing them from my text phone or computer very straining and challenging. As the head cold proceeded to improve, it appeared at first that the double vision was dissipating. My theory, seeing as no one could offer me a logical medical explanation for why this was happening, was that the pressure built up in my sinuses were also putting pressure on my eyes and thus skewing my vision. However, this week and last week I have continued to have this intermittent visual obstacle which is extremely annoying. The jury is still out on what the heck is going on.

Oh yeah, you are probably wondering what happened with that eye appointment I had down in Portland at the beginning of December. Well it is a case of strange unfortunate luck. There was a big storm here in the NW which caused major flooding damage on the interstate freeway to Portland. As a result, the direct route to Portland was shut down. There was a detour option but the route traveled toward central Washington through Yakima costing hours longer of driving time and gas. In other words, it really was not a route one wanted to take unless it was absolutely necessary such as catching a cruise boat to Baja, Mexico.

When Harley spoke with the receptionist and tried to reshedule with this particular doctor he was informed that was not going to be an option either. As "unfortunate luck" would have it, they had just discovered that same week that the doctor was being transferred to California within 2 weeks.

So anyhow, I searched around Seattle to see if I could find another neuro-ophthalmalogist who could work with us, be interested in what I have, and tell me what the problem is and how to solve it. First let me tell you that there are few neuro-ophthalmalogists in the country. It is a specialty where one is board certified in both neurology and ophthalmalogy. That means such a specialist will have an understanding of vision complications related to brain tumors and other lesions or disorders of the central nervous system. We thought surely there must be some others in a big city like Seattle.

Interestingly I found another doctor who specialized in vestibular disorders which is what I have. "GREAT!" , I thought. "What a bonus - we can address both my balance dysfunction and vision problems at the same time. I can be looked at holistically which is really needed in my case." I became more excited reading about this doctor and my faith in his ability to understand what is happening to me. Sigh. My fervor was short lived. My neurosurgeon worked on getting me a referral there and the office called Harley to tell him that I would not be an appropriate patient for their clinic. Apparently my case is too "complicated" for the only full-time neuro-opthalmalogy clinic in the 4 state region of Washington, Alaska, Montana, and Idaho. How do you like them apples? We were told to go back to the University of Washington where we did not feel we were getting the answers or level of care I need. So off I go mid-January to OHSU to see the partner of the doctor who was transferred to California.

I also had my first MRI post surgery on December 21st. My sister brought me so we made an afternoon and evening of seeing and doing Christmas activities in Seattle.

Then after all that of course were holiday projects to complete and holiday gatherings to attend.