Friday, February 29, 2008

Balancing Act

The week of Valentine's day my balance was on a decline again. It was time to practice on the BOSU (Both Sides Up) device. It had been a week since I focused on it. I have fluctuations where my balance will be doing pretty well and all of a sudden take a dip. That is why I have to continually train, walk, and keep my legs in shape. Like my friend Greg with NF2 says "Every day is a training day".

Upon using the device again I very obviously suffering from more imbalance as I had to repeatedly try standing on the BOSU for a certain length of time. I was falling off within 6 to 10 seconds and had to work my way up to 30 seconds again.

When I first started in February 2007 I could not stay on without using the wall to start out and letting go when ready. When I tried to stepup without the wall I had a difficult time even maintaining 10 seconds without falling off. The average was about 3-5 seconds. So then I started out with the device butted up against the wall and my fingertips touching the wall surface. When ready, I would release my fingers and try to stand on it as long as possible working my way to 150 seconds the evening after last year's big climb to 10 minutes in the summer prior to my surgery.

Gradually I stopped starting out facing the wall to having the wall at my side and using only one hand for support while mounting the device. Now I do not touch the wall at all and move the device about a foot to a foot and a half away stepping up free of grabbing onto anything for support.

It takes practice doing this as my body in the forward motion of stepping up wants to continue its inertia of moving ahead causing me to step off the device. So now I am working on some new muscles and a new skill to try to control my ability to stop in place after moving forward. The ability to do this is most challenging on hills or when jumping off of something as the movement wants to carry my body forward instead of stopping in its tracks. Thus when stopping to tie my shoe when walking down hill the instinct of my body is to roll downward so often I need to put out my hand for support.

Last week I was on the rise again. From 30 seconds to a minute to 2 minute to 3 I was able to achieve 4 minutes! Often I have to start again and again but this time I only mounted the device twice. The first try (a warm up) I was able to stand on it for 36 seconds. Then I concentrated really hard and was determined to make it to 2 minutes the second time but instead lasted 4 minutes!

I have also advanced to a few new exercises on it since surgery. I have started doing squats and try to work my way up to 10 without losing balance and falling off. In addition to the 4 minutes during friday's workout, I stayed on and accomplished 13 squats which is the most by far!

Here is another exercise that I sometimes practice too:

This device is great for all fitness levels! (from those needing to improve balance to pro athletes) There are several exercises you can do on it to train certain muscles and enhance skills. I am finding it very useful in strengthening my ankles, shins, and calves which help me in walking on uneven terrain, hiking, running, and even doing something as simple as tying my shoe without falling over.

Check out this page for exercises by inventor David Weck:

Check out this link for Jen's Tips:

Monday, February 25, 2008

Life As Late Deafened with NF2

Sunday I was letting my loss of hearing get me down. Don't misunderstand. I don't lament about not hearing music and sounds. It is the loss of privilege that comes with hearing that once in a great while makes me sad. With NF2 there are so many things to deal with that really the loss of hearing (at least for me) takes a backseat. I get more of a longing for the sense of balance I once had, not having to worry about my vision, falling asleep without having to worry about using eye drops and an eye mask so my eye does not feel like it was tossed out in the open on a hot desert highway upon waking, and normal vision which does not feel like I am cross eyed after running or reading for a longtime or viewing life through a shaky camcorder all the time.

But every so often I miss the privileges I had as a hearing person that so many take for granted. I miss being a part of that exclusive "club".

When thinking of what I have lost regarding my hearing and can never have back it is probably different than you would expect.

(This is the biggest one as it continues to irritate me and so for the most part I avoid the situation all together as much as I can.)

- making quick phone calls.

Making a quick phone call is now nonexistent. It is actually a hassle and takes more time. First I have to dial relay. Then I need to wait to connect to an operator. Then I need to remember to tell the operator to make sure to inform the person who I am, that I am deaf, and what I am calling for. Otherwise I get hung up on if the person has no experience with relay and thinks I am a telemarketer. Then I have to remember to tell the operator if there is no answer I would like to leave a message. Otherwise I have to inform the operator after making the call and have the operator dial again as relay is too slow the first time and the answering machine hangs up. Sometimes despite informing the operator that I want to leave a message the person forgets and we have to redial anyhow. There are times when the operator has their keyboard in "turbo code" and I get nothing but nonsense numbers and characters on my screen instead of logical conversation. Other times the operator may hear something wrong and type something that does not make sense to me. Example: The person I called is talking about their camp - saying "our camp". But the operator types to me "art camp" so I am confused and think the conversation is totally about something else. Another time the operator typed a message that "Putrid Sound Sailing" was calling me instead of the proper "Puget Sound Sailing". On one occasion I was talking to a man who I thought was my father and then he asked me who I was. Apparently the operator dialed the wrong number but I did not know until talking for awhile when the man inquired my name. (LOL Imagine if you are a guy some lady calls you up calling you dad!! In some cases that would send the person into a state of shock or panic.) On my end the operator just types to me that a male has answered the phone as I cannot hear the voice. It has happened other times where the operator dials the wrong number and if they happen to type what number I am calling I have no option but to hang up and get a new operator as once the call is going through the operator cannot hear me while the call is being connected.

Ok, so that is with a land line from home. Now think of how complicated it gets going elsewhere. I have a device to use with a payphone but it never did work well so I just don't have the ability to call from other places that do not have a special Voice Carry Over phone. Note: In the nearly 4 years that I have been deaf, I have never known any establishment to have a special VCO phone for late deafened adults to use.

Oh yeah! I forgot to mention too that the relay system does not work well with audix systems. You pretty much have to connect to a live person which is not always the case nowadays.

Now to the cellphone. Obviously an ear bud cannot be used to make a cellphone call while on the road. So no making calls while driving. So I cannot make a call if stuck in traffic or running late. That is just tough luck!

So what do deaf people do? We use text phones to send text messages or emails. While the younger generation can probably type like mad, this gal's frumpy fingers press multiple buttons at the same time. The other option is using the tiny stylus which is time consuming as well.

So like I said, gone are the days of making quick calls.

No longer can I lead an exciting and lively inquiry discussion with students. While I can still speak, I am unable to hear the quick responses which spur spin off thoughts and continue the flow of the dialogue and ideas.

I don't have the freedom to attend anything I would like and be interested in. For example, if the local community center is having a speaker come present a slide show and talk about his/her foreign travels I can't take part in it. There are certain guidelines on who provides accommodations and for workshops or presentations which are free or a very minimal fee, the cost of accommodating would be a financial burden. Thus, everything is not open to me like it once was. I am no longer part of the "exclusive club" with the hearing membership for admittance. So all these free presentations and workshops on a variety of interests and hobbies no longer an option for me.

It stinks to be referred to differently. In some cases I feel as though I am seen as a mentally handicapped person in which only certain people are qualified to communicate with me. "Tell her such and such" somebody will say to the relay operator while on the phone. It is so annoying to read that. The person is having a conversation with me but talking to the operator instead so I read on my screen "Tell her to do this or that".
Then other times I have to wait among hearing people for an unqualified person to relay to me in sign language what was being discussed in perhaps a 5-10 minute conversation. Can you remember everything passed along and said in 10 minutes and then recall how to convey that in another language?
I was very social so it sucks to not be a part of that anymore. I have always liked to get all of the information so it is bothersome to know I am only getting bits and pieces.

So I miss the freedom of having access to information as I did before and being able to intermingle easily in social settings. Sometimes the people the late deafened interacts with change too as it becomes more of an effort with communication that not everyone wants to pursue. While some late deafened have have been informed of the obstacle very bluntly and as a matter of fact that the relationship cannot continue, others will just phase out having less contact with the late deafened person.

Nearly everyone with hearing loss experiences this change in some degree.

Despite all of these losses that cannot be changed, I have to just accept it and move on. It is like taking a fall which cuts open your leg and leaves a deep scar. You must pick yourself up and continue the walk. When the milk has spilled from the picture onto the floor, one can't sit there and cry about the wasted milk which cannot be retrieved. The only productive option is to clean it up and make do.

Saturday, February 16, 2008

The Tower

The Columbia Tower in Seattle (picture taken on Thanksgiving day 2007)

To learn facts about the tower and see more photos, click the lighthouse icon in the post title.

In exactly 30 days my sister and I will climb our way to the top of this building in the Leukemia and Lymphoma Society's Big Climb event. It is the tallest skyscraper in the city and on the west coast.

Our team name is "High on Life" as we get a thrill out of such activities which get the adrenaline pumping and for me there can be no greater high than still being alive 15 years after a cancer diagnosis and a recent brain surgery. Now how many people expect to encounter those challenges in their lifetime?

The money we raise is used for patient and family support programs (which were absent back in the 80s when Sean Swarner went through cancer- the famous mountaineer who summited Everest and the 7 summits of the world), education on blood cancers, and research to find better treatments and cures for the cancers leukemia, lymphoma, and myeloma.

Out of 3 family members stricken with blood cancer I am the sole survivor. Shortly after my battle with cancer in 1993, a distant cousin passed away after an unsuccessful bone marrow transplant here in Seattle to treat non-Hodgkin's lymphoma. Then in October 2005 my grandfather who won his battle with cancer in 1992 was diagnosed with a second cancer which caused a large tumor to form on his hip bone slowly and painfully eroding away his hip and love of wandering around the cedar forest on his property in Upper Michigan. This second cancer was known as the blood cancer myeloma.

In March of 2006, after months of chemotherapy, there was a short period where his blood counts looked good and he appeared to have been in remission (if analyzing his blood work). Still in pain, the avid woodsman I knew hobbled his way around with a walker, threw it in the back of his trailer and jumped onto his 3 wheeler for one last ride with my dad and I out by the cranberry bogs. What joy I saw in his face that day and sparkle in his eyes! It was a true "high on life" moment that we grabbed and held on to for as long as we could.

It was not long afterward that the cancer was back at work doing its evil. A hip replacement surgery could not be done to repair the bone which had been worn away because his health status for a surgery was not ideal. When going through cancer and chemotherapy, one's immune system is severely weakened and blood counts at abnormal levels. Therefore, the body just does not have the strength to take on the additional challenge.

We had hoped that the chemotherapy would work in snuffing out the cancer and later he could get a new hip. It pained me greatly to see someone so strong who I have always known to spend all day outside walking briskly through the woods now being confined mostly indoors and who painfully moved short distances with the aid of a walker. In my own experience with NF2, losing my balance has been a similiar sting to the soul. To have once playfully skipped over a river from stone to stone to barely being able to even stand on a rock is an anguish that cuts so deep that the heart burns in bitter sadness.

By August things were not looking too promising. The chemotherapy was no longer doing its job in fighting back. Soon he was introduced to Hospice where he could get care in the comfort of his home in his final days. Without the chemotherapy to give a fighting chance, the cancer quickly ravaged his body leaving him in pain, incoherent, and no longer wanting food. On August 12th God showed compassion and mercy by closing the chapter on his suffering and bringing him home to begin a new adventure throughout eternity.

Our climb is in memory of him and the love of life and the outdoors that he passed on to us.

Our hope is that my friends KC and Skip who are battling incurable forms of the cancer and others like them and my grandpa will someday reach a remission to celebrate and that "high on life" feeling too.

Whatever support you can offer would be greatly appreciated! Tax deductible donations for our team can be made online through my fundraising page or my sister's at:


Thanks! :o)

Friday, February 15, 2008

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:

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.

Wednesday, February 13, 2008

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.

Tuesday, February 12, 2008

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.

Tuesday, February 05, 2008

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.

Monday, February 04, 2008

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.

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.

Saturday, February 02, 2008


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). 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

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.