Wednesday, September 27, 2006

Visit to Mt. Rainier - 35th Birthday

I like to visit Mt. Rainier at least every other year. I think I have been there about 7 times since we m0ved to the state of Washington. The

last time I was there over labor day 2004 before I lost the majority of my balance. I recall my dad and I walked across a glacier which I would no longer be able to do. Yet the mountain still calls to me and it was my wish to visit it again for my birthday (September 22nd).

I am pictured here the highest I was able to hike that day. Harley and I think I could have gone farther but the trail got steeper and more challenging which would have been incredibly difficult to walk back down and not to mention would take me a long time.

I could not help myself though and as our journey progressed I wanted to go higher up the mountain and further up the trail.

Thursday, September 14, 2006

Yumi & I in front of Mt. Shuskan

Photo taken by Yumi's husband Dan Larrson on Sunday September 10th at the Mount Baker Wildness area "Artist Ridge" trail in Washington.

Friday, September 08, 2006

Team in Training Snapshot

Doctor, Doctors...It is that time again.

Time for a reality check again.

My eye appointment was a week ago and upon peering through my pupils and the back of my eyeballs, there is still evidence of swelling. Apparently the optic nerves are not tamed yet so I will continue to take the Diamox (which reminds me I forgot to take it tonight! Crap! I will be right back.......Good thing I blogged.)

Ok I am back...medicine swallowed. I am too tired right now and do not feel like writing.

This afternoon I go in for a followup MRI scan of the brain a few weeks early as I have been experiencing some headache problems. The routine over the last year has been to get them every 6 months. After treatment it was every 3 months because I was having side effects.

My last MRI of the brain was on April 10th. The last spinal MRI was July 29, 2005. I do not know if I will be getting the spine MRI today as I forgot to have the doctor order that until I thought about it yesterday.
After the MRI (within the next week or so when there is an opening and a captioner available) I will see the radiation oncologist.

Alright. Goodnight.

Thursday, September 07, 2006

Shoes take consideration as well

Top left: Keens on the red sand of Sedona, Arizona.
Right: Simple Strappy Sandals with a formal evening dress.

Bottom left: Wearing TEVA leather sandals at the Jamaican market.

Since we were discussing poles let me share shoes. Shoes for the balance challenged take special consideration. Gone are the days of cheap shoes and high heels. You would not believe how hard it is to find a pair of comfortable shoes that look nice to wear with a formal dress!!!!! Fortunately I must have anticipated this struggle in my brain as a year ago I purchased some nice sandals on the REI outlet. The sandals are called "Strappy Sandals" by the brand "Simple" and are the absolute ONLY dress sandals I could find. I am SO glad that I bought them a year ago and never wore them until this June. The straps are velvet leather and the foot pads are a soft cushiony material with a form fitting sole. I went to SEVERAL stores trying to find something white to wear with an ivory dress to no avail! The shoes either had some type of heel, were a flip flop or open heeled shoe, or had a flat sole like a dang board! It REALLY was an impossible find. Since my ivory dress was long and covered my feet, I figured it would not matter to wear these black sandals.

When it is summer and hot, I really do LIVE in the sandals that you see me wearing in the Jamaica picture. I have been wearing them for 3 years and have found nothing else comparable. Unfortunately it looks as if the leather on the straps that fasten is starting to wear out (I have exposed them to salt water kayaking on a couple occassions). They are made by TEVA and I am waiting for them to make a similiar pair of equal comfort (no rubbing or iritation on parts of the feet), are light weight, and have a sole that literally conforms to and is shaped the same as the bottom of your foot.

If you look back in the blog posts to my earlier Arizona pictures you will see that I am pictured wearing them while posing with the skeleton of a Whooly Mammoth at the Mesa Southwest museum last October. I have not posted any yet, but I also wore these sandals exclusively while traveling in London and Italy prior to my treatment in 2004.

In the top photo are my trustly Keen Narhgee shoes. Aside from my REI backpacking boots (a gift in 2002), these are the most expensive shoes I own. It was quite a decision but when it boiled down to it there was no choice. Due to my balance issues I needed a lightweight trail shoe that conformed to my foot but in which I could also feel the contour of the ground through the bottom of my feet. Unfortunately the backpacking boots which I absolutely LOVED became difficult and a challenge for me to wear due to the thick sole and heavier weight. I could not feel the ground through the balls of my feet and thus sense changes in the terrain in order to adjust my footing for optimum balance and to prevent falls.

Now you may also wonder why I did not just by a pair of tennis shoes. Often regular athletic shoes do not have as good of a tread or grip the ground and terrain as well as a trail/hiking shoe. Those that do, run in the same price range as these shoes. Also, due to living in the Pacific NW where we get a good deal of rainfall I needed a shoe that was waterproof. That limits many options and the athletic shoes that have both good tread and waterproof ability sometimes cost more than these shoes.

My shoes I have all purchased at REI because I can taken them home and try them out and return them for a full refund if they do not work out. Most of the shoes I got at the outlet which has free shipping as long as I pick up the order.

Others I wear often:
Merril brown leather dress shoes (slip on but with a heel) for winter
Aididas Running Athletic Shoe (running and training to walk the marathon)

The "Pole" (me and my "sherlock" staff)

Photos taken by Harley Dufek
Top left is of me in July 2006 at Fort Worden State Beach in Port Townsend, WA. Top right is of me and two locals at a Jamaican craft market in Ochos Rios Jamaica in June 2006. Bottom right is of me on Hurricane Ridge in the Olympic Mountains National Park in Washington in July 2006.

Interesting links I found:

Fashionable walking sticks and walking canes!2920&keyword=%28walking+canes%29&match_type=content&gclid=CNyexvKVnIcCFQs3GAod5VUMsA

Free Leki Pole Offer

Trekking Poles

Walking Poles and Mobility Aids (one of the first photos is the walker with wheels I want to try out to see if I can use to rollerblade again),0005&source=google-adwords

Here is another version (cheaper one) of a walker with wheels that I would like to try out

If you want to buy a staff/hiking pole like mine, click the lighthouse link in the post title. The staff is made by the Audobon Society and is called the "Tracks" sherlock hiking pole. Harley bought mine at REI a few years ago as a birthday present but I cannot find it on their website. We bought a matching one at REI a year ago so both Harley and I can have one or he can use them both as hiking poles when I use my other pair.

The top of the sherlock staff can also be unscrewed and an SLR camera can be mounted on the top as a "on the go convenient tripod" for outdoor photography while on the trail. Currently the pole/staff is being sold on ebay through Mickie's Place Outdoor Gear for $49.99.

Wednesday, September 06, 2006


Note: Please read my comment written today September 7th which inspires the photos and my latest post of today. I want you to understand while the new rule may be a minor inconvenience for many people, there are others with situations where new security guidelines have become a hassle and more than an inconvenience. Remember that I represent a minority of the spectrum that has things easier. I write this not only about my own experience and emotions but for you to become aware of other people for whom travel becomes a crisis and a major burden to deal with these issues. I am rather open about my NF2 and needs. Yet remember that there are those who are private and would not want to disclose their condition under these new security parameters or would even feel up to dealing with all of this. I know when I flew home from treatment just over two years ago I was sicker than a dog and would not have been able to tolerate dealing with this scenario. What happens then? The burden is then passed on to family members, friends, or loved ones that may not know what to do with the situation or be quite emotional themselves. It can be just as draining or more so for them. Do the law makers or the TSA consider this? Are all airport staff trained to recognize and accommodate these people without requiring them to give full and detailed medical disclosure? So far in my travel experience that answer is "no".

Alright this has nothing to do with NF2 really but the news has made me LIVID!!!!!!! My husband flew out to visit his mother in Minnesota and I had bought some nice gardenia smelling body spray from Bath and Body Works. Those who are fans of the famous store no that it is not cheap. So let this be a warning to all!

Seeing as it is one of the last things I gave him while packing he put it in his carry-on luggage. He also has his toiletries such as hair gel, shampoo, and toothpaste. In addition he was carrying a nalgene water bottle filled with water. Guess what??????? At the x-ray machine airport security made him throw out EVERYTHING - yup the brand new bottle of body spray I just bought, the toothpaste, the shampoo, the hair gel, and even the freaking water for cripes sakes!!!!!!!!

What is next?......tampons and lip gloss that you find in women's purses??? Gum? Mints? Breathspray?

Okay the tweezers, nail clippers, and grooming scissors were a little silly but we put up with it. This new rule (just who in the hell pulled that out of their arse?????) of anything liquid is pure hogwash!

Now back to NF2, cancer, or other such disease or disorders. For many of us we MUST have water with us at all times. Unless you travel first class which is VERY EXPENSIVE, you know that something to quench your thirst does not come around for at least 20 minutes or more after you have boarded the plane.

For this reason, I ALWAYS carry some type of LARGE water bottle with me and or fill my hydro-backpack. I often suffer from dry mouth and need to drink water continuously. I know that several cancer patients, people on prescription steroids (such as NF2ers after surgery), and several other disorders need to do the same. What are they all going to be required to dump out their water now and wait for the little cup? WTF????? Again, who invented this dumb ass rule?

Let me also say that things I commonly carry on with me for obvious reasons would be lip gloss and carmex, a small bottle of body spray as one can become kind of smelly on a flight, a small bottle of hand lotion (ALWAYS as I often have a serious dry problem of my hands where they can crack and bleed in changing weather), a small bottle of mouthwash to rinse my mouth, eye drops (THERE IS NO DISPUTING THAT AND MANY NF2ERS WILL AGREE), and often my toiletry bag in case my checked luggage becomes lost.

We just made a flight to and from Miami in June without any problem. I had all of the above in my carry on luggage. So when did this lame brain new rule go in affect?

Needless to say. I am "madder than heck"! Please pass the word. This has just gone too far!

Saturday, September 02, 2006

Whose handwriting is that?

WOW! Again I have found a piece of paper with quotes jotted down and I stared at the paper wondering "Whose handwriting is that? Who wrote that and why do I have it?"

After flipping the paper over I observed that on the other side was some information for an online search about lab support regarding microbiologists. It definitely would not be one of Harley's papers.

Upon flipping the paper back over again and examining the list of authors who wrote the quotes I finally recognized the writing. While the handwriting is not the most beautiful it is still nice looking and legible. The letter shapes in the name "Martin Luther King Jr." and "Goethe" became familiar to me as I identified the writing as my own.

Now staring at the paper revealing my long lost handwriting it is as if looking at an ancient script written by a physical being that is gone. I can no longer identify with the handwriting and I wonder about the person who wrote it. I am amazed that it is my own.

This is not the first time that this has happened. Over the past year we have been doing lots of cleaning out and moving around of things. I have found old school notes that I have written and many tasks lists and diagrams. Each time I am always bewildered by my prior multitasking skills, things that I accomplished, and my good penmanship.

It is an odd sensation. When I see these things I feel as though I have known the person but I am not the person. This ranges from handwriting to pictures of me prior. It is like carrying a "symbiant" where I have that person's memories inside but I am a different physical being.

In case you are curious, here are the quotes I had written down years ago:

"Our lives begin to end the day we become silent about things that matter." -Martin Luther King Jr.

"There is nothing in which people more betray their character than in what they laughed at." - Goethe

"Life appears to me too short to be spent in nursing animosity or registering wrongs." - Charlotte Bronte