Wednesday, December 03, 2008

Brain Tumor Survivors and our Caretakers Taking a Time Out

Pictured to the right: Rhianon and I "NF2 babes"

Pictured to the left: Karen and Sam Stueland, Harley and I, Rhianon England

Oops! Back when I tried to upload a photo for this post, I had a problem with my computer locking up. This was supposed to be a draft until I could fix it and I did not realize it posted on my blog.

Last month was an extremely busy month for us and we even had a snowstorm and a foot of snow at the house during Christmas! With the New Year and things settling down now, I am back and my blog has not died out.

The picture (which I am finally now posting) is from our Halloween Party this year which we used to hold annually but have not for the past 3 years due to travel and of course I was recovering from surgery in 2007 and certainly did not have the energy to throw a party.

I was feeling so good within this last year and we were elated that I did not need to get surgery again this fall, that we felt like finally throwing our halloween party again to celebrate. It is always fun and we like to decorate the cabin really cool.

I am pictured here with 2 other brain tumor survivor friends and our caretakers (my husband Harley and Sam's wife and my good friend Karen who incidentally is a sign language teacher at the Hearing, Speech, and Deafness Center in Seattle).

Rhianon and I are afflicted with NF2 whereas Sam had something similar (Acoustic Neuroma). With Acoustic Neuroma, one also has a tumor on the auditory nerve. However, fortunately for Acoustic Neuroma patients, they only have one. Tumors in acoustic neuroma patients are easier to remove and treat unlike those of us with NF2 who have tumors on BOTH acoustic nerves as well as many other tumors in the brain and spine.

For Sam, his battle with his tumor was finished years ago when he had surgery to remove it. It has not and will not grow back. For Rhianon and I, only part of our tumors were removed and it is very common for them to grow again. In addition, there are other tumors that we will watch with our doctors throughout the rest of our lives and try to enjoy our lives as much as we can before surgery is needed again.

All of us have been left with many issues to deal with as the result of damage inflicted by the tumors. Our caretakers have a tremendous amount on their plate in dealing with our disorders. We are truely grateful for them! It is important for all of us once in awhile to have fun and take a break from all this brain tumor stuff and the things that go along with it.

This Saturday, I had the opportunity to meet Frank, Rhianon's caretaker, who goes to all her doctor visits and appointments with her.

Happy Belated Havest Time

Above are a few photos from when my sister and I visited the corn maze and farm here in Redmond. To see a slideshow of the rest of adventure go here:

This year the corn maze was nice and lots of fun for me as my balance has improved greatly! Last time we went to a corn maze together was in Bosie, Idaho in Sept 2005 when my balance was still very poor. I had difficulty walking on the uneven ground and needed to use a hiking staff. The fun and games all ended when I got poked in the eye with corn and could not see well. No eye poking on this trip! The maze had a question game about agriculture. Guess the right answer and you went the correct way! Guess wrong and you hit a dead end!

Yeah, we did hit some deadends but made it all the way through to our prize of a mini pumpkin at the end! :o)

Monday, November 24, 2008

Time to Eat Frogs Again

This morning I recieved a newsletter from Mac Anderson about their inspirational movie to go with the book "Eat That Frog" by best selling author Brian Tracy. It was perfect as I have been procrastinating many things I need to get done. The time gap of this procrastination seems to be growing while the holidays are fast approaching!

If you need a swift kick in the pants, some guidance to get back on track, or more structure to your life in order to become more efficient, check out this new short inspirational video.

If I happen to disappear for a little while, I am busy eating frogs! ;+)

To take a virtual tour of the book "Eat That Frog" offered by Simple Truths, click on the following link:

What Not To Do Before a Run......

fill your tank at an Indian buffet just a couple hours beforehand!

Also, don't pig out on hummus days before or do kickboard laps in the pool! LOL

My weekly runs have been going pretty great averaging over 40 minutes a run. I even ran the week of our diving incident. I skipped water aerobics monday, my run on tuesday, and any gym activity until thursday to rest up and ensure I did not encourage the onset of DCS (decompression sickness) in myself. As a result, I crammed all of my weight lifting into 3 consecutive days at the end of the week, took sunday off, then returned to the gym on monday for water aerobics, kickboard and back stroke laps in the pool, and an upper body weight routine. So when it came time to run on Thursday I was a little fatigued.

I had planned to meet up with my friend Skip for lunch that day. I was not that hungry in the morning and knew we were going to the indian buffet. So to build up a hearty hunger for a buffet, I skipped breakfast. I knew it was run day and questioned my plan. I never ran after eating at a buffet before. I figured after a couple hours it would be well digested and ok so I went for it!

Big mistake! Not only did my legs feel like lead from the workout the previous day and not ample recovery time, but I wa running with what felt like a humungous rock in my gut! It was a challenging run indeed and several times I wanted to just quit. However, I had a dental appointment and other plans the rest of the week which was going to make it difficult to schedule in the run on a later day. Therefore, I toughed it out so I could just get it done.

The combination of curry and spices churned in my stomach with each step. It took sheer will and mental focus to continue on as carrying the rock in my stomach was just unbearable! I had already stopped to vomet a small amount twice and had to control the urge for a 3rd round until I completed the run.

It was a test of mental wit to pass the time. I had to get my thoughts off of how uncomfortable and tired I felt and onto something more motivating.......something to make me hang in there. The night in ICU after my surgery last fall came to mind. After 6 or so hours of surgery, I had awoke to my body convulsing from violent vometing, shivering, and my head ringing loudly like a police siren when in reality I cannot hear anything. I remember briefly opening my eyes and seeing Harley and our friend KC. I am sure seeing me in that state was a horrifying experience for them. Then I awoke hours later alone in the middle of the night not feeling a whole lot better. I could not sleep at all. Time appeared to stand still. I could not wait for 8 am to arrive when visiting hours opened and I knew I would see Harley and my family again.

While running, I harnessed that feeling I experienced in ICU and the will I had to hang in there. Although my run was exhausting, it paled in comparison as to what I went through that night. Thinking about that situation made the grueling run much easier to tolerate and put it into perspective...a few minutes of discomfort as opposed to hours filled with uncertainty.

Needless to say, I will not be eating at a buffet again before I go for a run! That was so terrible that thoughts of thanksgiving dinner were incredibly unappealing!

Saturday, November 22, 2008

Bananas and Muscle Wasting

One of the issues I have found important with living with NF2 is proper nutrition. There are many foods I have learned to like simply because I need them as part of my dietary intake (V8 juice, raisens, oatmeal, celery, nuts, bananas, etc.).

I do not enjoy taking supplements so as much as possible, I try to get certain nutrients through food intake (hence the V8, raisens, dried apricots, and bananas as they are foods rich in potassium. For 3 years I took a medication for my vision that depleted my body of potassium leaving me with painful leg cramp attacks. Even with potassium rich foods, I did get to the point where I had to take a supplement of potassium gluconate in addition to dietary intake.)

But about the interesting article I found on the banana......

Diseases and disorders such as NF2 are known for a process of muscle wasting quite easily and if you don't use it, you lose it. It is one of the reasons I lift weights 3 times a week. But if you are not a weight lifter, there is still the banana which has been found to combat muscle wasting.

From the EatSmart column in USA Weekly

Want More Muscle? East a banana.
by Jean Caroer

You may think eating lots of protein gives you more muscle mass - but you should try potassium packed fruits and vegetables instead, says a new USDA study at Tufts University of older Americans.

Typically, muscle mass declines after age 50. But seniors who ate lot of high-potassium foods were apt to have 3.6 pounds of lean tissue mass than those who had half as much potassium.

HERE'S THE SCIENCE: Researchers believe potassium counters the effects of foods such as meat and cereal grains, that create "acidic residues" in the body, promoting muscle wasting. Vegetables and fruits, including citrus, paradoxically become alkaline in the body helping neutralize the acidity.

GOOD SOURCES: Potassium is high in bananas, dried apricots, cantalope, potatoes, sweet potatoes, winter squash, pumpkin, legumes, avocado, orange juice, and tomato products.

Wednesday, November 19, 2008

Freedom and Perseverence

A friend sent me this heart warming story of strength and the will to live that I thought I would share here:

"Not many people get a picture of this proud bird snuggled up next to them.

Freedom and I have been together 10 years this summer. She came in as a baby in 1998 with two broken wings. Her left wing doesn't
open all the way even after surgery, it was broken in 4 places. She's my baby.

When Freedom came in she could not stand and both wings were broken. She was emaciated and covered in lice. We made the decision to give her a chance at life, so I took her to the vets office. From then on, I was always around her. We had her in a huge dog carrier with the top off, and it was loaded up with shredded newspaper for her to lay in. I used to sit and talk to her, urging her to live, to fight; and she would lay there looking at me with those big brown eyes. We also had to tube feed her for weeks.

This went on for 4-6 weeks, and by then she still couldn't stand. It got to the point where the decision was made to euthanize her if she couldn't stand in a week. You know you don't want to cross that line between torture and rehab, and it looked like death was winning. She was going to be put down that Friday, and I was supposed to come in on that Thursday afternoon. I didn't want to go to the center that Thursday, because I couldn't bear the thought of her being euthanized; but I went anyway, and when I walked in everyone was grinning from ear to ear. I went immediately back to her cage; and there she was, standing on her own, a big beautiful eagle.

She was ready to live.

I was just about in tears by then. That was a very good day.

We knew she could never fly, so the director asked me to glove train her. I got her used to the glove, and then to jesses, and we started doing education programs for schools in western Washington. We wound up in the newspapers, radio (believe it or not) and some TV. Miracle Pets even did a show about us.

In the spring of 2000, I was diagnosed with non-hodgkins lymphoma. I had stage 3, which is not good (one major organ plus everywhere), so I wound up doing 8 months of chemo. Lost the hair - the whole bit. I missed a lot of work. When I felt good enough, I would go to Sarvey and take Freedom out for walks. Freedom would also come to me in my dreams and help me fight the cancer. This happened time and time again.

Fast forward to November 2000, the day after Thanksgiving, I went in for my last checkup. I was told that if the cancer was not all gone after 8 rounds of chemo, then my last option was a stem cell transplant. Anyway, they did the tests; and I had to come back Monday for the results. I went in Monday, and I was told that all the cancer was gone.

So the first thing I did was get up to Sarvey and take the big girl out for a walk. It was misty and cold. I went to her flight and jessed her up, and we went out front to the top of the hill. I hadn't said a word to Freedom, but somehow she knew. She looked at me and wrapped both her wings around me to where I could feel them pressing in on my back (I was engulfed in eagle wings), and she touched my nose with her beak and stared into my eyes, and we just stood there like that for I don't know how long. That was a magic moment. We have been soul mates ever since she came in. This is a very special bird.

On a side note: I have had people who were sick come up to us when we are out, and Freedom has some kind of hold on them. I once had a guy who was terminal come up to us and I let him hold her. His knees just about buckled and he swore he could feel her power coarse through his body. I have so many stories like that.
I never forget the honor I have of being so close to such a magnificent spirit as Freedom.
Hope you enjoy this."

Jeff Guidry

What is Compassion?

I am normally a daily affirmation reader and I have been going through affirmation books since 2005. My first affirmation book was given to me by a mentor in college when I was 19 years old. Within the past few years, my mom has kept me supplied with a pretty regular supply of affirmation reading.

Me = great quotes, affirmations, inspirational stories, and nature. Those are some of the things I REALLY enjoy and what drives me or keeps me going.

I stumbled upon an affirmation from a couple days ago which is just too good to keep to myself. It is interesting because I have been pondering lately how to define compassion. Voila! Charles R. Swindoll sums it up best in his book "Bedside Blessings".

"Compassion usually calls for a willingness to humbly spend oneself in obscurity on behalf of unknowns.....Truly compassionate people are often hard to understand. They take risks most people would never take. They give away what most people would cling to. They reach out and touch when most would hold back with folded arms. Their caring brings them up close where they feel the other person's pain and do whatever is necessary to demonstrate true concern."

I am very fortunate to have some true friends and very compassionate people in my life. I only hope that I can strive to also become a compassionate being and pay it forward.

Monday, November 17, 2008

A Window Into My Soul

Photo by Harley Dufek of me overlooking Puget Sound at Discovery Park in Seattle, WA last Sunday. The Olympic Mountains are in the backdrop.

Nature is one of the most precious things to me. It perfectly describes who I am and echos my personality. Simple Truths has created a new inspirational slideshow which captures the beauty of life which I am so passionate about. Click on the link to enjoy it too! It is sure to help you relax, remember what is important, and to give an uplift to your day!

From Mac Anderson of Simple Truths:

Ralph Waldo Emerson said:

"Never lose an opportunity of seeing anything that is beautiful. Welcome it in every face, in every sky, in every flower."

Thursday, November 13, 2008

Interesting Find

I was going through and doing some pruning today. You would not believe the stuff I save! Anyhow, I am going through old greeting cards I have kept and have decided to cut off the fronts to recycle and send to a program where children at St. Jude's make new cards out of them (thanks to my pal Jen, the recycling queen, for the tip).

While I was doing this pruning I ran across some quotes I kept from a tear off daily calendar. I LOVE quotes and I LOVE using them. I want to send it to my cousin who is undergoing a challenging transformation. Yet, I still want to keep the quote somewhere so I will post it here because I think it is a good one and a quote very fitting for those coping with NF2, medical illness, or any other sort of life challenge that tests our spirit. I hope you find it meaningful and useful in your life too!

"When you get into a tight place and everything goes against you, till it seems you could not hold on a minute longer, never give up then, for that is just the place and time that the tide will turn."
- Harriet Beecher Stowe

Wednesday, November 12, 2008


What is "bent", "the bends", "dci", decompression sickenss?

I have some disturbing news. Sunday we went diving again and had a fantastic first dive which was my 6th since getting back in the water. However, we chose not to quit while we were ahead and went on a second dive did not go so smoothly.

We took Mike's zodiac over to Vashon Island to dive at KVI tower which is one of my favorite dive places up here. The visibility was great and when I first dropped down, I found a sandy patch on the bottom where I could experiment with my bouyancy. I am still having problems with bouyancy and getting my weighting right. I am on the heavy (negatively bouyant) side but then I am having major bouyancy fluctuations in my suit because it is too big. After adding and dumping air out of my BCD for a few minutes, I finally got to a point where it felt pretty good and I could go enjoy the dive which I did. I would have to say that it was my best dive yet out of the 6! We saw lots of life (dirona nudibranchs, glassy tunicates, sea cucumbers, sea stars, big plumose anenomes. sponges, ling cod, various fish, crab, and a large octopus sleeping in its den!)

On the way up I had a little bit of a problem with the air vcnting out of the suit. I had to hold on to the anchor line but because there was some slack in the line, it just kept going up instead of keeping me down for a safety stop at 15 feet. The dive was to a maximum of 77 feet for 33 minutes dive time under the water.

When we got out, Harley and Mike inquired if I wanted to do another dive. I said sure seeing it was still light out. We left the KVI tower dive sight and sped across Puget Sound to Redondo on the mainland where we put the boat in. By the time we got there, the daylight was starting to fade a little and Harley had to jump out to go use the bathroom. When he returned, Mike had to go (I didn't because I wear Depends when diving). When he returned, the light was starting to fade more which concerned me a little but I was not anticipating it to be a long dive. I thought we would surface before dark.

I was the first one into the water as Harley helps me get all setup and then I wait for Mike and Harley. I was cold while waiting (I had a minor leak and got a little damp but did not realize until later). So while I waited for them to get their gear on and enter the water, I started doing jumping jacks in the water and running in place to warm up. I looked down at the anchor line and noticed it disappear within just a couple feet. The visibility was not great at the surface which made me a little apprehensive. Meanwhile the light continued to fade out as the sun began to set. I thought about totally aborting the dive and letting Mike and Harley go while I waited in the boat. But that would only kill more time and delay the dive. Plus, I would probably get cold waiting. Rather than going through the hassle of having them take off gear and get me out of the water, I chose to just brave it out.

When they rolled into the water, I asked Harley what was the plan. He signed that we were going to snorkel over to the dock and drop down. "Great!", I thought. I would have a reference for going down in such low visibility and darkness. I figured it was pretty shallow under the dock and antcipated exploring the plethora of life that is normally found growing on the dock pilings. It seemed like a plan that I would be okay with. In the worst case scenario, I could grab the piling if I was having a bouyancy problem again while surfacing. (about the visibility is common for it to be stirred up at the top but clear once you drop down which is did. Therefore, I used all these thoughts to comfort myself and brave the low light/night dive which I had really planned to exclude from my return to diving.)

When we dropped down I had to stay within a foot of the piling for visual reference so I would not get disoriented. Once at the bottom, we did not go under the dock but away from it which was not what I had schemed out in my mind. "Ok", I thought. "Everything will be fine." So I followed and went along for the ride. At 51 feet we came upon a small stack of tires which had some cool life growing on it and surrounding it. At one point near this tire structure, my mask began to flood with water and became a quarter to one half of the way full. "Alright, just don't panic. It is no big deal. You know how to clear it out." I was kneeling on the ground and next to the tires. However, when I first tried to clear the mask, my technique did not work. Further, I started to swallow the water that was going up my nose. I was not breathing in, but when I tilted my head back to clear the mask, water entered my nasal passages when I stopped blowing out! This has happened before since the onset of facial paralysis while eating soup and drinking water since. So it was not the first time I experienced this sort of choking phenomena. At first it set me into a little panic. If I cannot see I am sort of screwed so I had to clear the mask. But when I tilted my head up to clear the mask, I started choking on water. It is times like these that your ability to survive hinges on keeping a cool head and having faith and confidence in yourself that you can solve the problem. So that is just what I did and kept trying until it was cleared. Then I gave myself a few moments to relax before continuing on. When the situation first happened I got Harley's attention and was very uncomfortable. I wanted to go up but then I solved the problem and all was fine again. I did not want to surface from 51 feet in the fading light with a leaking masking and swallowing water. That just would not have been good and may have caused me to freak out (too many factors to deal with at once).

We continued down and came upon an old boat with an octopus in its den underneath. It was cool but I got tired of trying to shine my light that only extended so far into the crevase and trying to maintain a neutrally bouyant to position to see it. Thus, I looked around the boat for a little bit. Did I also mention that the bouyancy was especially challenging for me? I spent a lot of the time landing on my knees which was frustrating. My trim is off and my legs seem to sink lower than the upper half of my body which makes swimming efficiently underwater bothersome.

I started with about 2450 PSI (pounds per square inch) of air in a steel compact 80 tank. I noted when I got down to 1200 or 1150 PSI which was less than half my air. According to my dive plan , half of the amount of air means it is time to head back and ascend to a shallower depth. I tapped Harley and thought he saw my guage and air. Yet, he remained fixated on the octopus while Mike was a few feet deeper taking pictures. By now it was pretty dark and if the light from either buddy shined in my eyes it was greatly disorienting. I chose to just stay next to the sunken boat and octopus to wait a few more moments. The boat was small so I looked within the structure a little bit.

Remember that I was having bouyancy problems so I did not really want to venture around too much. Between handling the light in one hand and alternating between the inflator hose for my bouyancy and guage telling me my air and depth in the other, and every so often dropping my light to fiddle with the inflator hose with both hands (because I have discovered my hand is a little weak and sometimes I am not fully pressing the inflator button) I was fumbling around. This was not good as it became more dark under the water and my air was becoming less at depth (57 feet). I did NOT want to run out of air at that depth, try to ascend, and then be left with having to manually inflate my BCD in the dark which is a problem with my facial paralysis. Therefore, I wanted to turn back and ascend to shallower depth NOW!

At 1050 PSI I tapped Harley on the head and waved my light to get his attention off the dang octopus. I showed him my air and tried to sign in the darkness that I wanted to go back. He pointed in the direction of a rope along the bottom which I sort of remembered. I went up to the tires which was at 51 feet and then next thing you know I was at 63 feet in the direction Harley pointed. It was too dark for me to tell which direction went to a shallower depth. I looked at my guage and I was now down to 950 at 63 feet with no idea which direction to go to get back! I was lost.

Now I love Harley to tears but on land he is not the most efficient of navigators. If I am not paying attention and playing the "Lola - gps", he most often goes the wrong way. At 63 feet and 950 pounds of air I did not want to go the wrong way! I really did not want to ascend within the water column but I felt at that point we had no other choice. My panic level was starting to build and I wanted out of the situation before it became worse. I signalled to him to go up. I know that was confusing because he knows I am not comfortable doing that and prefer to follow the slope to ascend to a shallower depth. Frustrated, I signed a couple times "PLEASE help me go up!" I needed help because first of all, it is hard for me to ascend like that without some kind of reference point. Further, it was now dark and even more difficult for me to find my reference and go the right way.

In order to do ascend together and not loose him, I had to grasp his shoulder strap with my right hand. That means I had to drop my light hanging from my side. In the other hand, I had to manipulate the inflator hose. I did not have a free hand to monitor my guage for air, depth, and ascent rate. I had to look up through the darkness to try to see my bubbles. I had no idea how much air I was at so I grabbed the regulator on his pony bottle a started breathing off of it to ensure I would have enough air.

As a result of all this, the air in my large drysuit did not vent out quickly enough and we made a fast ascent. Harley was not too happy and understandably so. On the surface we snorkled over to the dock and dropped back down to the bottom at 15-17 feet for our 3-5 minute safety stop. It was shallower because the tide had gone out while we were underwater.

Immediately upon getting back in the boat Harley said he was "BENT" which is decompression sickness from excess nitrogen bubbles that form in the blood. He was starting to feel some affects already. He breathed off of Mike's O2 bottle for quite a long time after the dive and back at the condo. By monday morning he was feeling shifting of an arthritic type of pain all over his body. He went to work that afternoon and by 6 pm (24 hours after the dive) he was not feeling any better so we called DAN (Diver's Alert Network) and went to the hyperbaric chamber at Virginia Mason in Seattle.

He was in the chamber all night (8 hours) for a depth of 60 feet. He did not like it in there and said he felt very weird and achy. He slept all day yesterday and began to feel better yesterday evening and was well enough to go to work later this morning.

68 hours later I am feeling pretty good. I did not seem to get bent so I did not go in the chamber with Harley. At 12:30 or 1 am this morning, the pinky on my right hand became numb and thing finger has swollen for some reason. We have no idea what it is from and if it is in fact an NF2 related thing. We were told that after 24 hours if I did not feel anything, I was pretty lucky and unaffected. I did not feel anything at 48 hours either.

So what now?

Harley is to abstain from diving for a month and needs a checkup with a diving physician before he returns, he is to rest and not engage in strenuous activity for a week, and drink plenty of fluids (none containing alcohol). The decompression sickness could recoccur so he is to take it easy.

How about me?

After the dive, stenuous activity can encourage the bends. Therefore, I did not go to the gym at all yet and will not do my run this week which normally is on tuesday. Yesterday I also rested with Harley and took a long nap as I did not get consistent or enough sleep while at the hospital.

I asked Harley if he thought it would be okay if I go lift weights today but he was not too thrilled with the idea and told me to just take it easy which is a hard thing for me to do.

The situation is not sitting well with me and I am having a hard time. It bothers me to have caused Harley pain, to go to the hospital, to miss work, and to miss his 3 workouts for the week. I did not like seeing him in a hospital gown on a gurney and hooked up to oxygen and a monitor. I have always been on the other side of the fence and have been the one in the hospital or sick. It is difficult to be on the other side and must have been awful for Harley and my family to see me like that (especially for Harley and our friend KC when I woke up from surgery vometing, convulsing, and yelling; and when my sister heard me yelling in the background when the nurse had called them in the lobby). down to the nuts and bolts.....

How could this have been avoided and what is to learn?

Well there is a GREAT deal we have learned. First things first, I should not have engaged in a second dive in low light conditions before I was ready. I should have called it but instead of being assertive, I was passive and went for the ride. One would not write a book without first learning grammar and how to spell. We skipped steps and you cannot skip steps (especially when your life is at stake). The second thing MAJOR thing is lack of communication. We did not have a good dive plan. It was not clearly discussed (or at least relayed to me) exactly what we were doing, where we were going, what maximum depth we were going to, and at how many PSI we were going to turn back and head to a shallower depth. Had all that information been clearly understood, we would not have encountered the problem.

So lots of things to think about over the next month.

Monday, November 03, 2008

Pruning Your Life

Before I recieved an email from Mac Anderson about simplifying your life, I had already decided that it was about time to do that this month. Time to weed out what I don't want and do not use anymore. Everything is getting way too cluttered and I do not have enough space so that makes life for me hard to manage.

Ironically after my surgery last year, I got a newsletter from the MS society with a fantastic article about why people with MS and other illnesses and disorders of the brain need to simplify things. I for one, have had challenges to my short term memory and get very forgetful so if there are too many things crammed in a closet or scattered around, remembering what I have or where I put things becomes too difficult.

Over the past couple weeks this forgetfulness has been weaving its way back into my life. It is time to go back to making lists of what I need and what I have to do and to get rid of the clutter so that I can think properly and be efficient. When things are too disorganized, it becomes difficult to think clearly and I waste lots of time trying to figure out what has to be done.

Funny thing is that Harley and I were just arguing about this over the weekend. He was saying that "less is more" regarding our decor. I have a packrat habit and like to save everything and put too many things on a table or shelf which to him appears messy. LOL I did not feel like arguing about it so before our party I went to town and to the gym. When I returned, he had rearranged things and took some things out and did a fantastic job! I was so impressed! I wish I had that skill. So this was a good lesson in experiencing "less is more" to get me on the track that I desire to be. The focus is to strive to make things better so that I can be the best that I can be and use my full potential.

Here is what Mac wrote me about the new gift book titled "Finding Joy - Simple Secrets to a Happy Life" that he offers.

Inspriational Video about finding joy:

"One of the conclusions I've reached as I've grown older and, I hope, wiser is that...less is usually more. In other words, when given the opportunity to simplify your life...take it.

I compare it to pruning a tree. By removing the excess branches the tree has more energy to bear beautiful blossoms and healthy fruit. Your life is no different. When you continually prune the areas not bearing fruit, you will be able to focus your energy on what matters most.

That's what Finding Joy is all about...reminding us to uncomplicate our lives and focus on what matters most. The subtitle of this beautiful gift books says it all...Simple Secrets to a Happy Life!

Also, since its release 3 months ago, our 3 minute inspirational movie has been watched by over 5 million people around the world. The music, the photography and the quotes will take your breath away!"

Live with Passion,
Mac Anderson
Founder, Simple Truths

Friday, October 31, 2008

Monsters in the House

Michelle and "Frank"

Spooktacular Decor

Our decor for our party theme "The Creepy Cabin Crawling with Creatures"

Happy Halloween!

the pumpkins my sister and I carved last friday
Mine is the winking one and hers is the space needle lit up below.
Have fun this evening! :o)

Tuesday, October 28, 2008

Diverbeck Returns!

a view of me under the water
what it looks like from down below (that is me on the surface)

me giving the deaf applaud (click on the photo to see Mt. Rainer in the background)

More photos of me by Mike Fitz.

Rolling In

Success! I am giving Mike the thumbs up that everything is cool! This is after I have already given Harley the OK symbol after my back entry into the water. Mike and I are hanging out waiting for Harley to gear up and enter the water.
A view of me from the opposite side about to do a back entry
(click on the photo to see a larger view and you will be able to see a magnificant shot of Mt. Rainier in the back drop on the right side of the picture (at the back of the zodiac).

Me (in the pink) sitting on the edge of the zodiac ready to roll back into the water while Harley (standing in the blue) checks to make sure my gear is all together correctly.

Here are a few photos compliments of our dive buddy Mike Fitz of my 2nd boat entry on the dive last Sunday.

Sunday, October 26, 2008

Onto Dive #5


Mike and DebbieHarley and I

Prepping to dive again this Sunday (today). We had a nice time with Michael and Debbie last weekend doing a dive from a zodiac boat which is a much easier entry and exit for me. It was my first dive from a boat in over 5 years! All I had to do was roll back in and then climb up the ladder after taking off my gear. Fantastic! I did not feel the strain of being an olympic weight lifter (my comparison for the shore entry and exit on dive #2).

I will have more photos and stories to share Monday.

Have a great Sunday! :o)

Who Matters

I ran across this quote while reading another blog of someone with NF2. It keeps coming to mind when I run into some of the brick walls.

"Those who mind, don't matter and those who matter, don't mind."
Dr. Suess

Pets and Exercise Are Good Therapy

I was rather discouraged this afternoon after I spent the better portion of a nice day indoors composing another fundraising campaign email. I was rather satisfied with what I wrote only to be beaten down a few minutes later by a crude and mean response to my email. It was so hurtful and discouraging that it actually brought me to tears (yes I can cry some tears now).

Fundraising can be very hard and cause you to make yourself very vulnerable. Yes! That is right! I am actually human and can tend to take things personally and be rather hurt. After all my work and effort, it is times like this that I feel like quitting.

So I did what I wanted to do all day but waited until I had finished the campaigning. I went to the dog park for a nice refreshing walk with my dogs. It is exactly what I needed! It was so nice to see all these happy people and to be greeted again and again with joyful smiles of other dog owners. Further, it was great to see Katie and Jake totally enjoying themselves darting around and playing with the other canines. It is such a treat to them when we go to the park (which is at least 1 mile to lap the entire thing).

When I go walking, I do lots of thinking and working things out. At first I was very angry and upset when I arrived. But with each step and breath of crisp autumn air, my head began to clear as I tried to put things into perspective. This week I ran the dog park twice with Katie. After 2 laps earlier in the week, I was very tired, tripped over 2 dogs who stopped suddenly right in front of me, and then had to stop to use the bathroom. After all that, it was just too difficult to motivate myself to continue one more lap. I went back 2 days later determined to do it again and complete at least a 3 mile run for the week.

So I kind of looked at the situation like that. I am alive because I don't quit. You have obstacles but you have to keep going to overcome them. I told myself to "toughen up" like I had to when I wanted to complete the run for the week. I reminded myself that the incident was just another brick wall to test me and see how badly I wanted to attain my goal.

After 3 laps around the park, I went to the gym which was even more helpful and productive with improving my state of mind. Nothing like oxygen to the brain! The tension which had built up fueled my weight lifting routine allowing me to even add some weight to some exercises.

I felt very calm, relaxed, and satisfied afterward. I felt ready to continue on and work on doing and being the best I can be.

For all those strangers who smiled at me at the park and gym, Thank You for making a difference in my life today! :o)

Friday, October 24, 2008

Little Bit of Comic Relief

Ok. It could be age related but since the radiosurgery in 2004 I have had problems spelling, using wrong words (such as "red" instead of "read"or "there" instead of "their") and then just completely typing something totally different than what was intended or unknowingly omitting content all together. Lots of "normal" people have scoffed that it is just age (I just turned 37 and it happened since I was 32). Gee, how old is old?

At any rate, for some people these errors may have been normal all of their lives but for me it was not! As a matter of fact, spelling was a breeze for me and English was always something I excelled at in school. I was not out of practice either as I just completed my graduate degree in teaching months prior to the radiosurgery. For those who have never been to graduate school, it is 2 solid years of massive reading and writing. I cannot even fathom how I made it through now and was so successful.

When I struggled with these issues in 2004 I began to research it and discovered that the characteristics are common with brain tumor and head injury patients. Thus, I had to develop some skills to overcome it which included getting out my high school dictionary to look up many words and always editting and reading through what I wrote a couple times.

Sometimes however, I am in a hurry and neglect to read through something thoroughly. As a result, I see it AFTER I have already sent or posted what I wrote or someone kindly lets me know.

LOL Yesterday was such a day. Next week is Halloween already and I wanted to make plans with my sister to see the fantastic haunted forest out here called "Nightmare at Beaver Lake". In my haste, I sent off the email without proofing it as I always do. She got a real kick out of the fact that I asked her to come with me to see the "Beaver at Nightmare Lake".

LOL Oh that gave me a good chuckle for the day and I could not stop from laughing at myself all the way home last night!

Watch out for that BEAVER at NIGHTMARE LAKE next week! ;-)

Thursday, October 23, 2008

Reflection For This Evening

As I was doing biceps curls on the nautilus machine at the gym and glared at my reflection in the mirror, I looked deeply into myself and my mind began to wander. At first glance I thought about how my trials have aged me and weathered my face. Then I began to ponder over exactly what I have been through. Suddenly, the magnitude of my life changing events hit me.

"My God! I am alive!"

As if enduring stage 3 cancer and surviving chemotherapy when I was barely 21 was not enough, I actually lived through a brain surgery! One...ok, is not really expected but now that I am 37, cancer is kind of normal. Never in my young life could I have fathomed I would be hit with a double whammy and need to go through both.

What is even more amazing is that I am not just alive, but I have managed to preserve a good portion of my quality of life. As I admire the tone of my biceps, I contemplate all of the things I do have and appreciate what it means to not only have life but quality of life. I am still able to run, walk, lift weights, eat, drive a car, see, and recently engage in my passions of hiking and diving.

Thank you Dr. Delashaw (my brain surgeon in Portland at OHSU). That was the goal. It never was to fully remove the problem tumor or to be rid of it forever. Unfortunately, that does not exist yet for those with NF2. The focus was to find someone with skilled hands that had the experience to remove just enough in order to no further harm. It requires an incredible amount of trust as you can imagine.

I really hope my good fortune and luck continue in the future. For now, I am just going to relish in what life I have right now.

Photos of Mt. Rainier

Eureka! I finally went through and uploaded them AND added captions!

Enjoy! :o)

Picture time?

Hmmn. I suppose it is time to post some photos, eh? Well let's see what I can do. I recently noticed that I never posted all the photos to my Rainier hike, Wallace Falls hike, Mt. Si hike, and the Pacific coast beach all from last month to my Picassa albums (the link is under "My Great Adventures" in the left column). It takes some time to upload, edit, and caption them so I will try to post a few at a time. For today I will try to get some of the photos from diving in Seattle and on the Hood Canal. I forgot the camera when we went to Edmonds and the conditions were perfect with a gorgeous sunset. Must have been meant to be one of those stunning moments only reserved for us like some of the rainbow moments I have experienced in the the past few years.

Thanks for your patience and continuing to read! :o)

Tuesday, October 21, 2008

Make A Difference

Thinking back to my ultimate life goal and pursuit in life, it has always been to make a difference in someway to contribute to the greater good of society. This Sunday, October 25th, will be National Make a Difference Day. There are many ways in which you can contribute. You don't have to be rich and give oodles of money to a cause in order to make a difference. You only need to just DO. If you have not pursued this in your life yet, you are missing out and most importantly losing that which makes us have the conscious ability to decide to give and to care.

This week MacAnderson has written about a new book Simple Truths offers which provides you many ideas of things you can do to make a difference. Here is a simple example:

It all started with a piece of trash...
Matthew Emerzian, a successful music industry executive in Los Angeles, was walking back to his office with a co-worker one afternoon in 2004 when he stopped to pick up a plastic fountain drink cover from the sidewalk and put it in a nearby garbage bin.
“My co-worker quickly asked me what I was doing,” Emerzian recalled. “I explained what I thought to be the obvious, but apparently I was wrong.” To the co-worker, litter simply belonged to the litterer, not to the population as a whole.
“I explained to him that litter and pollution are everyone's problem not just the person who couldn't find the trash can for their cup lid. He profoundly responded with 'Dude, you're weird.'”
Emerzian, now 38, walked back to his office both angry and sad.
“I couldn't believe that someone could remove themselves so far from the greater good of our world.”
Matt began to think, 'what if everyone in the country picked up one piece of litter on the same day.' Or 10 pieces! The math was easy, yet so powerful. He then began to think of a few other easy things that 300 million Americans could do to make a difference.
From this, a great idea was born. He called his friend, Kelly Bozza, and told her that he wanted to write a book about how all of us can make a difference with our lives. Within a week, they had over 100 items on their list and were ready to start writing.
Their book, titled
Every Monday Matters...52 Ways to Make a Difference, has sold 120,000 copies. It is both powerful and thought-provoking. The ideas are simple - small acts that collectively add up to an enormous impact for the greater good. It's 144 pages with lots of illustrations - chocked full of big ideas.
Dr. Martin Luther King said, “Everyone has the power of greatness; not for fame, but greatness. Because greatness is determined by service.”
Also, today, I am pleased to offer you a way to get started with making every Monday matter, in honor of National Make a Difference Day, Sunday, October 25. The tip for week 41 is to use a re-usable shopping bag.
The next 500 orders of
Every Monday Matters will receive a free Simple Truths eco-shopping bag. By shopping with a reusable bag, you can use 1,000 fewer plastic or paper bags this year, especially shopping for groceries.
Click here for full details.
(Note: This promotion is available for US shipments only)
Live with Passion,
Mac Anderson
Founder, Simple Truths
Visit for more information about Make a Difference Day.

Saturday, October 18, 2008

Prepping to Dive

We are getting ready to go out of town for my 4th open water dive (5th dive since August 8th). This August is the first I have been diving since March 2004 due to the ordeal I have had with the problem brain tumor. It is not because of actually having brain tumors that I could not dive. The pressure inside the brain remains the same at depth. The issue was that I went through a year of being sick, dizzy, and having vertigo.

On the third day of radiosurgery treatment I almost drown in 4 feet of water in a hotel pool when I was alone and closed my eyes under the water. Once the sickness and dizziness resolved, I almost completely lost my balance function. I say almost because I did not have to rely on a wheelchair and I got away with using a hiking staff for a cane.

Since then, I took swimming lessons in 2006, started snorkeling with a floation vest, and have been consistently going to water aerobics and lifting weights starting in winter 2007. All of these things have been in preparation to dive again. First I needed to adjust to the water and become comfortable in it again. Then the last part I have been working on for over a year has been to improve my balance so that I can handle wearing a tank and heavy gear.

I have had many things to figure out with a new body and needing to get appropriate fitting gear. It is amazing what a difference in size makes for what gear to use and how streamlining as much as possible is important when you have a loss of balance function.

All dives so far have been a practice to try out gear and try to solve bouyancy issues which I am working on but getting close.

Tomorrow I will be trying a new thermal configuration and doing a second dive on a new BCD which I found to work out for me last weekend. I will be trying out a new inflator on the BCD, playing around with the weighting again, discovering if the undergarment and thermal setup I now have will keep me warm without affecting my bouyancy, and diving from a boat for the first time in 6 years.

There is a lot to know and work out. An experienced diver of 40 years told us it takes about 20 dives to get oriented and really comfortable with your equipment. So if this present setup works, I have 19 more dives to get it downpat. I can't wait for the day when I once again feel like a fish under the water and that being down there is natural! (That means everything is working out just grand with my weighting perfect; I have been so comfortable down there in the past that I could almost take a nap!)

Ok. Gotta go get ready. More later!

Have a nice weekend! ;-)

Thursday, October 16, 2008

"Unload Your Emotional Baggage"

When you deal with a serious illness or medical condition, such as coping with the effects and possiblities to come with NF2, attitude is extremely important. It is what makes or breaks you. The measure of your character is not what happens to you but HOW YOU RESPOND to the challenges and obstacles you encounter. A positive attitude will really help carry you through so that you are able to persevere but a pessimistic or negative one will beat you down until it crushes you!

In order to attain the most positive attitude, you must let go of any emotional baggage you are carrying. You have to free yourself. I knew that before I went into surgery, to offer myself the best chance of survival and recovery, I had to learn to forgive. You can't enter a life and death situation with bitterness in your heart. It will literally eat you and cause you to lose the battle. When you are put through something so physically tramatic, you need every ounce of positive energy for your immune system to win the fight.

I will be the first to admit, forgiveness is really not easy nor is keeping a positive attitude at times. However, you have to realize that to get where you want to go, all that other stuff does not matter. The pettyness and things of the past no longer matter and do not have a place in your future.

I get an inspirational newsletter from author Mac Anderson of Simple Truths. This week's words are a nice reminder of where my focus should be. Click on the link and you will see a beautiful slide show on the "Power of Attitude which come with the book.

The following exerpt is from Mac's book "The Power of Attitude".

Our emotions are powerful motivators, and more than almost anything else in our lives they will drive our behavior. Sometimes our greatest challenge is to get inside our own heads to understand what makes us tick. Why do we feel and behave the way we do?
Highly motivated, positive people are focused. The mind is clear, and energy levels are high. Also, many things can hold you back and prevent you from becoming all you can be. One of those things is...Emotional Baggage.
I know two family members who were best friends, but several years ago, one reminded the other of something that had happened thirty years earlier. One thing led to another and, you know what, they haven't spoken since.
Anger or resentment is like a cancer, and when you let it go untreated, it will put an invisible ceiling on your future. You don't know it...but it does.
William Ward identified the cure when he said, “Forgiveness is the key that unlocks the handcuffs of hate.”
Those are powerful words, and I know from personal experience...forgiveness works. A few times in my life I've been greatly wronged and taken advantage of. My first reaction, of course, was anger and resentment. I held it for awhile and felt my stomach tie up in knots, my appetite wane, and the joy slip out of my life. The quote from Ward provided the wake-up call I needed to forgive the person who had wronged me. It was like I had been playing the first half of a basketball game with three-pound steel shoes, and in the locker room the coach said, “Mac, try these new Nikes in the second half.” Multiply that by ten and you'll understand how great it feels to unload your “emotional baggage” through the power of forgiveness.

Monday, October 13, 2008

What Matters

A friend sent me this today and I liked it so much that I had to share it with you. The meaning is very profound.

There comes a point in your life when you realize
who matters,
who never did,
who won't anymore...
and who always will.

So, don't worry about people from your past,
there's a reason why they didn't make it to your future.
'Be kinder than necessary because everyone you meet is fighting some kind of battle.'

Thursday, October 09, 2008

No Surgery - What Does This Mean?

At my neurosurgery appointment last month. we were greatly relieved to learn that surgery for the other brain tumor is not necessary at this point.

Are you confused?

That is okay if you are because we were also confused at first. We were not quite sure how to react after having the mindset over the last 9 months that I was going to have surgery again this fall. It was an odd mix of emotions but ultimately I chose to embrace this surprising news and enjoy the feeling of release from this burden for awhile.

I know some of you are not religious people but I am very spiritual and you have not been through what I have. So how would you know what it is like? I can say that I have never thanked God so much. In the days following the news, I walked around in disbelief of all that I have been through in the last 4 years and very thankful that God had helped me through it. There were times I just could not even imagine reaching this point or fathom that it could get better. I had this tremendous upwelling of buried emotion when I reached my remission from cancer years ago. It was just incredibly shocking that I had lived and that it was pretty much over. It has been a similar feeling to have bought some more time and not need another surgery so soon.

The saga of life with NF2 is far from over but for the moment I am savoring the pause. To be expecting and dreading a brain surgery for months knowing what I would have to endure again, and then to be suddenly released from that burden, is like winning the lotto when you are near bankrupt! I have been planning time for a recovery and worried about packing activities in before I run out of time, and now I am free! I can dive all fall and winter and pursue other things!

As I said, NF2 is not over. I still have tumors in my head "too numerous to count" as do other people with NF2. While we took part of the tumor out last year to take pressure off the brain stem, there is still tumor remaining which can and may very likely grow back. How long? We don't know. Some people have had regrowth significant enough that it warranted surgery again in 3 years. I have passed 1 year so I have another 2 to sweat out.

Meanwhile, the tumor on the OTHER side of the brain stem is compressing it but I am not showing symptoms serious enough that surgery would be needed. I am actually doing quite well at the moment which is the best I have been doing over the last 4 years. The aim is quality of life over tumor removal. As you know, a cure to rid us of these tumors for good does not exist yet. There are no guarantees on improving quality of life through surgery. As a matter of fact, it could get worse and even result in loss of life. Therefore, unless there is an intolerable complication that needs to be addressed (such as the trigeminal neuralgia I had last fall), it is a "don't fix it if it ain't broken" philosophy. There are many risks with surgery so you need to weigh them against the potential benefits. Then you must evaluate, is the risk worth it?

So the plan......
We are going back to the "wait and watch" method which began when I was diagnosed in July 1999. The tumors continued to grow after diagnosis but at a slow rate and I used that time to take advantage of the hearing I had remaining (and my perfect sight and balance). Less than 5 years later one of the tumors grew really large and very rapidly for no apparent reason. It just happens like that. There are no set of guidelines to follow. You just wait and see. So within 5 years from diagnosis I had to pursue a treatment and I became completely deaf, sight impaired, developed facial paralysis, and lost my balance function. The following 3 years were watching that tumor to see if it was going to respond successfully to the radiosurgery in July 2004. It did not improve the way we had anticipated so I inevitably needed a surgery for that one tumor.

So 9 years so far. We are going to go back to monitoring them every 6 months thru MRIs and evaluation of symptoms.

I am EXTREMELY lucky to have made it to the age of 37 and get away with only 1 surgery thus far! According to my age of diagnosis I am a mild case. Yet, due to the number of tumors I have I could be classified as severe. I do not fit either classification of mild or severe. So maybe I am some new mild form with many tumors that grow very slowly or not very much at all.

Hopefully that will buy me some time while we wait for a cure!

Thursday, October 02, 2008

My Quest4NF2 - news wrap up

Visit the link to read another news article published last week regarding the 31.5 trek Harley and completed to raise research funds for NF2.

Thank you everyone who has been so kind and generous in contributing and even helping to collect donations! I fear I and others with NF2 would have no hope without compassionate donors such as you. I am still fundraising so it is not too late to donate if you have not yet or even if you want to make your holiday contribution to my cause. Just click the first giving button in the left hand margin or by visiting the following link:

To give you an idea of how badly your support and funding is needed, I currently attended another popular fundraising walk to cheer on a friend. To my surprise, there were 3200 participants in just Seattle alone! The event along with numerous other events are held in every major city in the US!

It was just Harley and I in the state of Washington doing this hike and raising $4,489 currently compared to the $6.4 million which the other cause raised. There are less than 100 of us across the entire United States giving our whole heart by participating in various fundraising events for NF. There are less than 10 of us with NF2 who have the ability participating in these events.

Even though I am doing great the last few months compared to the past 4 years, it does not mean the saga is over. This is a life long battle and things can change very rapidly. Many of us (myself included) have tumors in the brain or spine or BOTH which are reported as too numerous to count! Life for us is unpredictable and there are no guarantees. So we have to go with the flow of what it dishes us and we always have a loan out to buy more time.

Thank you again for everyone who has been supportive and has contributed to this fund. It is desperately needed. Every year it seems someone is dying from NF2 but not without months or years of suffering and their quality of life being drained away.

If you have happened upon this blog and even read it regularly, I ask for you to find it in your heart to honestly consider this cause and donate what you are able if you have not already done so. Even $5 can make a difference. If you had to give up your morning coffee once or twice, a package of snacks, a movie, going out to dinner or lunch once, or whatever is an optional expense for you, I truly appreciate your sacrafice!

If you absolutely cannot afford to donate $5 but you do want to help support this cause, please email me at bluediverbeck (at) yahoo (dot) com to learn what you can do.

To all of our friends, family, and sponsors who have helped us to raise funding for NF2, we are extremely grateful to you! Fundraising is very challenging and even more so when you are directly affected by your cause and time is running out. We feel very lucky to have you with us on this journey and to have your support! You have provided us and others with a brighter outlook and less despair!

Tough Terrain

Right: the boulder field I had to carefully climb down from.

My chosen route up.

The start of where it really became challenging (who cares about distance! It is the terrain!)

Almost on top of the world again

5 years and 3 months since my last visit, and 4 years 2 months since I have been unable, I finally reached the summit of Mt. Si once again. If you look back in my blog to 2005, this hike was a dream to achieve once again (along with my way out there aspirations of climbing to the summits of Mt. Rainier and Mt. Kilamanjaro and diving with great white joke!).
It has been a long haul and I am not back to what normal was before radiosurgery. Yet accomplishing the endurance and balance to be able to hike the terrain to this 4, 167 foot summit is a HUGE hurdle I have overcome. It is something I have been working toward for the past 4 years and I am stoked, elated, overjoyed, satisfied, and in disbelief. There was a time after waiting for my balance to improve only to watch it slip further away, I was sad that I would never be able to venture to the top of this mountain again.
It is a challenging hike in the area. They say hiking up and down it 3 times is the equivalent of climbing Mt. Rainier and many climbers utilize it for training. The round trip hike is 8 miles of a gradual climb to the top.
My endurance is good n0w and I did not feel physically exhausted or tired. Nor was I as sore as I have been in the past hiking it. However, I did have the challenges of double vision and imbalance to contend with. 15 minutes into the hike the double vision set in again causing me to not be so certain about my footing. Within 20-30 minutes I had to start using my hiking poles to provide stability. Short breaks to shoot some photos, take a drink, and peel off layers of clothes, helped to allieviate the double vision episodes.
The most difficult part was traversing the very top where the terrain became rugged and rocky. To reach the best view, I had to scramble a field of large boulders. LOL I had no idea how I was going to get down. I counted on figuring that out later. I could not help myelf from going further up however I managed to get there (sticking my poles in my pack, scrambling and minor rock climbing). But the view is so incredible! Wouldn't you want to go all the way too?
I will be getting back into scuba diving. So maybe there is hope for those great white sharks, eh?

Wednesday, October 01, 2008

10 K without a doubt

Yesterday evening I ran a over a 10 K without question as I followed the mileage markers on the trail. On my previous 10 K run on the same trail I was unaware yet of the markers and went by my pedomete. However, when I walked it out the pedometer reading indicated that I came up a little bit short on the distance. Apparently that is the difference between a walking and running pedometer which I was puzzled about when I purchased it. A walking pedometer will reflect in inaccurate reading when running.

The run was no easy accomplishment for me. Before I reached 3 miles I was pretty tired. I had run just over 3 miles with the dogs at the park the night before. Running is not my passion either and is not incredibly enjoyable so even more motivation is needed. I wanted to do it though and get it done because it was a goal I had set early in the year. When I was unsure if I actually went the distance the first time, I had planned to do it again using the mileage markers instead of the pedometer. My plan was to complete the task after I had accomplished the 31.5 mile trek and recovered from it. With the last day of September and today the first day of October, it was time to get off my butt and get it done.

As I stated earlier, this was no easy task so it takes me lots of mental motivation and a battle of witts with myself. Part of it was stubbornness to get this out of the way, another part was looking forward to the satisfaction of completing the goal, and the remainder was thinking about the people I know who do this and run marathons and most especially the few NF2 patients who run half or full marathons. If they can do that, then I must certainly step up to plate and run a 10 K.

Patrick you were on my mind the entire time. I hope your treatment goes well and you are able to continue running.

Anne, Bob, Greg, Deb, and Olivia,

You are all amazing and have my complete admiration for your dedication and spirit (they are all NF marathon runners).

Kelly and Randy, as always, Ashley has been with me in spirit pushing me along and encouraging me to believe in myself that I can achieve what I set out before me.

And finally Skip, you were the one who believed I could do it and I did not want to let you down. I just had to do the run again to make sure I really ran a 10K. Thanks for believing in me and helping me to trust myself. You are a true friend!

Friday, September 26, 2008

Adaptive Sports - Scuba Caddy

This is something I will have to look into.

One of the main reasons I had to quit diving over the past 4 and a half years is that my balance was too poor to be able to handle dive equipment safely. I have been lifting weights consistently at the gym for a year and a half, in addition to doing water aerobics and pracitce standing on the BOSU balance device. FINALLY, I have reached the point that I can stand and support myself with a scuba tank and weights on without falling over. However, walking with the equipment on and entering and exiting the water is another story.

Again, my legs quiver as if about to snap like when hiking and I stop to stand in the middle of a hill. It was a little embarassing, but I needed help getting in and out of the water on my first open water dive recently. The gear is just so heavy compared to the normal weight one carries around. Then when exiting the water it gets even heavier.

It made me go to the gym the next day and work harder lifting more weight. I do not want to be any kind of body builder but just be able to partake in the normal activities I did before losing balance. Even though I am strong and probably have the most muscle mass I have ever had in my life, the loss of balance will make me just crumble in certain situations. It is really amazing and something I could not comprehend at all until it happened to me.
Anyhow, it was kind of discouraging to realize that shore diving probably is not going to work out to well for me unless I have a couple strong buddies to either carry my gear for me or to support me on either side on my walk to and from the water. Further, the situation greatly limits the number of places I could shore dive in comparison to what I did before. As a result, boat diving, which can be costly, is the most ideal for me.
I was thinking how it would be nice to have poles or some type of cane or carrying device for diving. When doing a search on Craig's list for certain equipment, I came across the scuba caddy which could expand my opportunities and extend the length of years I could dive in the NW.
A portion of the sales of this adaptive device go to the following charities for disabled divers:

Happy Fall, a very Happy Birthday!

At the Hammond Beach House in Pacific City, Oregon
My mom and I wearing our crazy masks

Although my birthday was on Monday which is the opening day of fall, Harley, my parents, and I celebrated over the weekend at the Hammond Beach House on the Oregon Coast.
Thanks Harley for taking the time off drive to Oregon, to go to my doctor appointments in Portland, and then also to go out to the beach for a few days!
Thanks mom and dad for joining us and the celebration!
Thanks Dave and Christie for letting us stay at your fabulous beach house! It is one of our favorite places to visit!
Friday we received wonderful news at my appointment. While the saga is far from over, we were very relieved to learn that I do not need a brain surgery this fall! It was a tremendous weight lifted off our shoulders so we were able to truly relax and just enjoy ourselves.
(I will write more later on what exactly my status means and my reflection on it).
Also, thanks to my friend LoAn for spending Monday afternoon with me on a walk with the dogs and taking me out to lunch for a warm and delicious bowl of pho!

A Beautiful Story I fell compelled to share

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

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

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

Panorama Point

As I approached the famous Panorama Point on Mt. Rainier I threw my hands up into the air and exclaimed in exhilaration "I made it!". Unbeknown to me, a hiker saw me who was coming down the mountain from further up the trail. When I turned to face him I was a little embarrassed but then I thought "What the hell!". I did not care. If he had known what I had been through, he most likely would have done the same.
The very last time I had made it to this point was when hiking with my dad over labor day 2004. It was not even 2 months post radiosurgery for me and I was souped up on another dose of steroids to control the brain swelling I had been experiencing. Because it was still early in the swelling phase of the tumor, my balance and vision had not been fully affected yet. I actually had quite a bit of balance left and the steroids were carrying me through.
By spring of 2005, I experienced the apex of my loss of balance to the degree that I would fall over and not even realize it if I closed my eyes while standing on flat ground. It was very disheartening. With my soul so tied to the mountains and the sea, I was just devastated to be torn away from the activities I love (hiking and diving) and many more.
In 2005 I did not even visit the mountain. It was such a hard year. In 2006 I began to improve and we took a trip to the mountain for my birthday that September. For a change, I was not so concerned with reaching the highest elevation possible. Instead, we took the paved meadow trails and then with hiking poles I was able to make it part of the way up the unpaved trails. We reached my end point where the terrain became to rocky, uneven, and scary (I am not afraid of heights but of falling which is easy to do once you loose your vestibular function.).
In July 2007 I returned again with my aunt and uncle. The snow line was much lower at that time of year so we only went as far the fields of snow. The way up all the stone stairs was okay as I was using my poles. However, it was extremely slow going down and utterly terrifying for me! I imagine watching me inch my way down the cut out stone steps was similar to watching somebody agonizingly learn to walk again. It was pretty stressful but I had been determined to go up the far and had to bear the consequence of going back down (kind of like a cat climbing a tree).
This time it felt great and I went higher than I had with my dad in 2004. We (Harley and I) started out at the visitor center which is at 5400 feet. Panorama Point is at 6800 ft and we passed it. According to the map, the distance we traveled above the point, and the trail, I figure we went to at least 7000 ft. And did I mention I went all the way up without using my poles!? I used the poles for the way down but I felt fine and it was not so scary. I felt rather efficient and what took me so long is that I kept stopping to take photos! hehe ;o)