The Throb

Yes I know....lame post title. I was not quite sure what to call this. It is time once again to start jotting down my medical and symptom notes which some may find frightening or boring. If I do not record it however I will forget it (as is starting to happen already).

The question is: Is it a symptom? Is it the oncoming of a cold or illness? Is it a migrane? Is there another tumor growing or working its wickness?

This is what goes through the mind of someone with NF2 or even cancer or any other serious illness in which symptoms or signs of something more pertinent
needing attention would appear as just something ordinary to other people. Did that sentence make sense?

Sometimes when something occurs I get so used to it that I start to make myself believe that it is normal or I withhold from doctors thinking I may seem like a hypochondriac or the problem will just go away in a few days.

Here is the deal:

Saturday was my longest marathon training (4 hours). I felt fine the morning of, during the training, and afterward. However, Sunday morning about 5 or 5:30 am I awoke with an excrutiating headache. Was it actually excrutiating? Hell I don't even know anymore. I have gotten used to pain and all these side effects that sometimes I just think it is normal.

At any rate, I had to take some pain relievers in order to go back to sleep. I convinced myself that I was coming down with whatever ailment Harley had when we returned from the SW. Therefore, I started popping vitamin C and echinacea like mad and making sure I had adequate rest. I even bought this bottle of "Emergen-C Immune Defense" tasty rubin lemon honey losenges. They were kind of like sweet tart candy or chewable vitamins that fizzed in your mouth.

Despite my drinking of echinacea tea, 100% vitamin C juice and my supplement popping, I continued for days to have the throbbing headache concentrated mostly in the front of my head and behind the left eye. (Note: On Friday and Saturday of last week I experienced some mild jabbing pain in my ear as if the start of an infection. At the store on Wednesday evening, the pain also included the back of my head and the left side of my neck or region around my ear.) The area mostly concentrated on the left front side of my head behind my eye. Is that where I have that other big meningioma??? The pain also made me nauseated which I thought I was done with. I hate being nausous. I had to eat however (which helped the nausea) because I could not take pain relievers on an empty stomach.

This happened daily throughout the week at various times of the day. We went to the grocery store after our walk on Wednesday night and I could not tolerate really to look at stuff long or even be there. It occured again and was making me sick. Again yesterday late morning I felt nauseated and got relief after having a yogurt.

Today I seem to be doing pretty good. The last couple mornings however, I have awoke to slightly swollen eyes (the skin on the eye lids). Both evenings I got plenty of sleep.

The headache has not occured yet today so I am at a crossroads on what to do. Do I email all my doctors and tell them about it? I don't think I am feeling stress right now that I am aware of. Last eye visit I had my neuro-opthamalogist thought I might be having stress headaches. Fortunately the pain seems to be relieved through a non-aspirin pill. Normally I have depended upon I-B profen and at certain times over the last couple years I only experienced relief when taking Excedrin.

Like I said, I have to log it here so I can keep track or I will forget about it or what happened. It is hard to know whether I should cry wolf to the doctors when I actually don't know if it is a wolf.

HAPPY HALLOWEEN!!! BOOHAHAHA!

Last night we had our pumpkin carving festivities. Pumpkin food, drink, and warm tea was also to be had. From left are featured my pumpkin, Pat's pumpkin, and Harley's pumpkin.

After searching two major stores in Redmond with no success I luckily found a pumpkin stencil pattern at our local grocery store. These stencils work even better because instead of paper that you need to tape on it is a sticker pattern. You just carve right over the sticker and when finished remove the excess sticker portions. No need for messy tracing with a pen or pencil, cutting out shapes to trace, or paper falling off the pumpkin face leaving an uneven pattern!

This works really great for someone like myself as my hands are no longer steady (nor is my patience) after the digression of NF2 tumors or treatment (not sure which or both....prior to all this I had pretty steady hands). In fact, for those who do not know, Zoology is my background degree. The disection portion of labs was always my forte' and at one point in my undergraduate education I thought I would probably make a great animal surgeon. However, it did not seem like like there would be a plethora of jobs in that route. I would not want to make an incision in a living creature either.

I guess I made a good consensus back then as there is no way I could perform something like that now! Harley on the other hand is a very skilled and masterful pumpkin carver. I kept thinking what a great surgeon he would have made. Yet I am very glad he did not choose that path either.

Click the lighthouse in the post title of this blog entry. It is a link to a slideshow of Pat and Harley carving their pumpkins. Included is a picture of all three of our pumpkins with the actual stencil pattern given names for each. UPDATE: YAHOO PHOTOS IS BEING CRANKY. THE EARLIER SLIDESHOW FORMATS I USED NO LONGER WORK BECAUSE THEY DECIDED TO UNBRILLIANTLY CHANGE TO A DIFFERENT MORE ANNOYING FORMAT. FROM THE NEW LINK I POSTED YOU WILL HAVE TO CLICK ON THE SLIDESHOW TO VIEW THE PICTURES IN SLIDESHOW FORMAT. THE ALBUM IS TITLED PUMPKIN CARVING 2006.

We realized when Harley was finished that he created another NF2 pumpkin. Last year was his first and we did not have stencil patterns. The reason it is an NF2 pumpkin is because it shows signs of the NF2 halmark of facial paralysis. I did not like the cleaver in it but he said that represents surgery on the side that is weakened.

To see our pumpkins from last year, please click the links to below that will direct you to last year's Halloween blog entries:

Mr. Eggplant Pumpkin
http://diverbeck.blogspot.com/2005/11/meet-mr-eggplant.html

My Happy Pumpkin from last year
http://diverbeck.blogspot.com/2005/11/happy-belated-day-of-dead.html

Okay I must be going nuts. I thought I posted the photos of our two pumpkins together last year but I guess I did not. Let me see if I can find it. Okay, Harley's pumpkin from last year is the small photo in the upper right corner.

Where you can find me

Hi!

I have created a new blog today. No I am not abandoning this one. I felt I needed a special place to share with you my involvement and preparation for one of the largest events of my life. I never imagined I would be in a marathon. Funny how it took being humbled and beaten down by NF2 to have my eyes opened wider. Just when I thought I understood empathy and many other perspectives of life, I have restarted life again anew.

If I had not been struck by NF2 I do not think I would be doing this. Strange how life takes us on those paths. I have thought about what I would be doing if I did not have NF2 and I am certain I would be too busy on a very different path and the thought of doing this marathon would have never entered my mind.

In the past months of making the decision, committing, fundraising for the LLS and my marathon involvement, learning more about "Team in Training", meeting the people training with me and dedicated to the society, finding out who supports me, I have gained more perspective than I could have imagined.

What started out as being able to walk at my regular pace again without a walking stick (after bouts of illness, dizziness, and at times not even being able to read or make it far out of bed), a chance to honor my grandfather battling his second cancer (a blood cancer), and an opportunity to fulfill a debt and responsibility I felt I needed to contribute for my good fortune, has turned into quite a phenomenal journey that I will carry in my heart forever.

They say that you can never fully understand a man (or woman) until you walk a mile in his (her) shoes. Well I am literally going to walk 26.2 miles and through the process I have been learning about the blood, sweat, and tears that people dedicated themselves to in order to give me a second chance.

Prior to my decision to embark on this journey I found I took something for granted that I never realized I had. I did not know what Team in Training was or the committment that people chose to make. I guess at the age of 21 and beyond I just thought the medical resources that kept me alive came from the government or perhaps I did not think about it too much. I was just glad to make it through that ordeal.

Being involved in this program has greatly enhanced my sense 0f gratitude and appreciation of life and the good will of humanity.

Please come and visit me at my Seattle Marathon Blog at http://blog.360.yahoo.com/blog-zo.V4TMzd7O1jdfKa9vCJKnI2TVF.

Please also check out the links down on the bottom of the left hand side of my yahoo 360 Seattle Marathon Blog. I have included links to the Leukemia and Lymphoma Society, the Team in Training program, my LLS donation page, the Seattle marathon info page, a link to the Seattle course map, and the pages of some of my amazing teammates who are inpiring and have overcome tremendous odds.

Quotes I like that get me through

Here are a few quotes that I have enjoyed. I have a calendar with a quote for each day. Generally I also read daily affirmations too. These words are what motivates me and helps me press on. I will leave you with a few of my recent favorites while I do some "catching up" from my return. I hope you enjoy them as much as I do.

More things are wrought by prayer than this world dreams of.
- Alfred Lord Tennyson

Our chief want is someone who will inspire us to be what we know we could be.
- Ralph Waldo Emerson

What people say you cannot do, you try and find that you can.
- Henry David Thoreau

You cannot dream yourself into a character, you must hammer and forge yourself one.
- James A Froude

When a man's fight begins with himself, he is worth something.
- Robert Browning

While you live, while you may, become good.
-Marcus Aurelius

Have a purpose in life....throw into your work such strength of mind and muscle as God has given you.
- Thomas Carlyle

The possibility that we may fail in the struggle ought not to deter us from the support of a cause we believe to be just.
- Abraham Lincoln

It is the greatest of all mistakes to do nothing because you can do only a little. Do what you can.
- Sydney Smith

Wow! Where did October go?

Geesh! I just realized it has been a whole month since my last blog post. I got very busy after my birthday trip to Mt. Rainier. It is now 1 month prior to the marathon so I have been busy trainining and preparing f0r it. I am still doing fundraising and focusing on everything I will need to be ready for the big day.

I also had to plan for our trip to the southwest. We left on October 16th and returned very late last night (or early this morning depending on how you look at it). I hope to post a couple shots of the 1000 or so photos we have. But right now my first priority is preparing for the Seattle marathon. My fantasy is to make another blog with more details about my involvement in the marathon, info on why I am doing it, some pictures, thank you recognition to my donors, names of those I am honoring and walking in memory of, and hopefully some shots of my experience in the marathon (probably not great because I have to stand still to get a steady shot but it will at least give you the perspective of what it is like to be in one). I was hoping to accomplish building this site before the marathon but I am not sure I will have time. I might have to just write a little something about it here. In case you are wondering...YES! THIS WILL BE ONE OF THE BIGGEST EVENTS OF MY LIFE!. I am nervous and preparing for it just like someone who is getting married or having a child. One main thought that goes through my mind in all this is "Okay now I am down to one month. I made it through 5 months. Please God do not let me get injured before the event.".

Oh yeah. Here is the Team in Training website: http://www.active.com/donate/tntwaak/tntwaakRDufek

About the last appointments.............well shoot I just don't know what to say. I was told things look stable on the MRI but somehow the MRI report indicates that there is even less space for my brainstem between the tumors on both sides. Somewhere in the process of time the current report indicates there is now only 4mm of space between the two tumors (brainstem in the middle) as opposed to the 6 or 8 mm prior. I have inquired about this discrepancy which seems rather important and huge to me. Afterall, it is MY BRAIN. I have not gotten an answer. Could it be that the reading radiologist made an error????? Well I pursued it for awhile and it just exhausted me. There is nothing to be done anyhow if there was some growth nobody caught except to just cut it out. I am focused on the marathon right now and don't want anything to change my plans. I will do some more prodding and investigation into after the big event.

In case you have not figured it out like I have over the past few months, one event carries me over to the next. It gives me something to look forward to and focus on. About a year or so ago I was afraid or leary to make plans (such as traveling) so far in advance because I was not sure what was going to happen or if I would make it there.

My birthdays are kind of like that now. There was a time after treatment when I was afraid I would not make it to my 32nd birthday. It is kind of like the movie "Final Destination". It felt really great when I made it to that day and it had passed! So each year is kind of a milestone for me now. I reflect back on all that I have been through and how far I had come when I was uncertain to be at that point.

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.

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.

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.

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
http://www.fashionablecanes.com/?engine=adwords!2920&keyword=%28walking+canes%29&match_type=content&gclid=CNyexvKVnIcCFQs3GAod5VUMsA

Free Leki Pole Offer
http://www.leisure-offer.com/rd_p?p=113082&t=1126&c=364035&gift=13145&a=13145-komperdell%20trekking%20pole

Trekking Poles
http://www.truelocal.com/topicsearch.aspx?q=trekking%20poles

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)
http://www.activeforever.com/departments.asp?Path=T17,0005&source=google-adwords

Here is another version (cheaper one) of a walker with wheels that I would like to try out
http://www.spinlife.com/category.cfm?categoryID=73&adv=goto&tar=walking%20canesv2&cm_mmc=Yahoo%20CM-_-Walking%20Aids-_-Walking%20Aids%20Page%20-%20standard%20keyword-_-cane%20walking&OVRAW=walking%20canes&OVKEY=cane%20walking&OVMTC=standard

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.

AIRPORT SECURITY GONE TOO FAR!!! - SEATTLE TO MINNEAPOLIS

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!

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

An interesting quote I want to remember

I have a plethora to blog about that it is not even funny. I've been busy with some fundraising efforts that at times emotionally tap me out or shall I say make me too emotional.

A good friend of mine with NF2 has been gracious to send me the ALDA (Association of Late Deafened Adults) newsletter over the past couple years or more. On the last page of the thick newsletter is a quote by a popular metaphysical author by the name of Joseph Campbell. I remember studying his works back in college when I took a class comparing the bible, mythology, and historical writings from other various ancient cultures.

Upon reading the quote again, it seems to fit with many facits and pursuits of my being.

"People say that what we're all seeking is a meaning for life. I think that what we're all really seeking is an experience of being alive, so that our life experiences on the purely physical plane will have resonance within our innermost being and reality, so that we can actually feel the rapture of being alive." - Joseph Campbell

Just my medical notes before it leaves my brain

Medical Update:

Blood test (CBC - complete blood count) retaken 2 weeks ago and everything is normal. I have an iron deficiency which is now resolved.

Week of August 6th and August 14th - constant head pressure (like my head was in a vice grip), pressure in the ears, very loud and noisy tinnitus, and CONSTANT headaches. Most often the headaches occured around the eyes and sinus area. Sometimes the headaches were in the back of the brain/head like sharp jabbing pains. I recall sharp shooting pains on the left side originating from the area surrounding the brain stem. On at least 4 occassions the headaches were bothersome enough that I could not sleep or focus if awake during the day. On 4 occassions I recall needing to take IB profen.

Possibility (just guessing) - the last time I had one of these headaches was on August 16th. I went swimming on both the 15th and 16th. My mask may have been on too tight to create a seal and thus greatly increased the ocular pressure. In addition, I swallowed and inhaled the pool water frequently. When swimming laps it is hard to not ingest water when I turn my head to the right shoulder to breath. Maybe my mouth on that side is not creating a good seal but that is where I am most comfortable turning my head to breath.

VERY IMPORTANT - the odd weakness in my left arm, wrist, and hand has returned over the past couple days. Strangely enough my strength has increased in my left arm from repetively loading it with bags of groceries and using the right hand to grip the handrail. However, on occasion it is difficult to even hold a large class of water or a water bottle in that hand as it begins to shake. This never occurs on the right hand.

I remember noticing the return of the shaking left hand/wrist on Friday or Thursday when I was holding a cereal bowl full of watermelon (not incredibly heavy). I was eating while watching a movie. While using the utinsel in my right hand I tried holding the bowl with my left soon it became very difficult. My left hand started shaking making it hard to hold the bowl and finish eating.

I have noticed this left hand oddity while holding something with my left hand. However, yesterday after standing at our fund raising table for a couple hours my hand starting to bother me without even holding anything. It starting shaking mildly and felt weak.

I hope to heck I do not have the beginning start of Parkinson's Disease!!!! I have read about it and recognize mild shaking appendages as the early signs. SOMEONE WITH NF2 PLEASE TELL ME YOU SOMETIMES GET SHAKING IN YOUR ARMS/WRISTS/HANDS. After going through cancer and suffering complications of NF2, I DO NOT NEED to get some other serious ailment without a cure!

I can't remember what else now. Sometimes I get used to these things happening that I start to think it is just normal and I forget to write it down until a couple weeks has gone by. Then if the condition worsens or persists I am like "Hey. I don't think that is supposed to be happening!"

Oh, the only other thing I can think of off the top of my head is lethargy those 2 weeks, sometimes just nearly passing out and needing a nap after eating a meal (perhaps a sugar rush), degradation in balance when waking (falling off the toilet or staggering to the toilet when I awake and either falling over and nearly so), and Saturday my balance was really off. It is the first practice (aside from the day I fell on my tailbone) that I felt I struggled to walk with a normal gait.

For anyone reading, sorry if this bores you or bothers you. This is the best place for me to record changes in my medical status so that I can recall it. My handwriting is atrocious so a written journal of these accounts is a no go. I do go back and read the blog to track my progress.

In Loving Memory of Grandpa Curly

On Friday August 11th, 2006, my grandpa Curly (De Grand) left this world to begin a new existence. He valiantly battled a blood cancer (plasmacytoma which progressed into a multiple myeloma) since October 2005. Last week in the peace of his home and comfort of his wife and friend God called him home.

In November 2006 I will walk a marathon (26.2 miles) in honor and memory of him. My efforts are in support of the Leukemia and Lymphoma society's Team in Training program. While training to complete a marathon those of us who are team in training members not only strive to increase awareness of blood cancers, but also help the society raise money to attain its mission to cure these types of cancers.

My grandpa was always a fast walker and LOVED the outdoors. His spirit lives in me and has been the motivation for me to believe I can accomplish something like this despite the hurdles that have been set in my path. I know my grandpa will be with me every step of the way.

Please click on the lighthouse link in the post title to see some photos of my grandpa I would like to share with you.

The following poem I would like to dedicate in memory of my grandpa who I believe is still with us.

Do Not Stand At My Grave And Weep

Do not stand at my grave and weep
I am not there

I do not sleep
I am a thousand winds that blow

I am the diamond glints on snow
I am the sunlight on ripened grain

I am the gentle Autumn rain
When you awaken in the morning's hush

I am the swift uplifting rush of quiet birds
In circled flight

I am the soft stars that shine at night
Do not stand at my grave and cry
I am not there

I did not die

- Author Unknown

Brain Port

This highly interests me. Some people dream of being able to hear again. Yeah that would be nice but what I truly crave and long for is the sense of balance I once had. Some days it is absolutely painful (emotionally) to know what I used to be able to do and not be able to do those things anymore. I watch all forms of life and ages.....from the smallest infant tumbling and learning to stand to an elderly person exhausting him or herself just to walk to the car or cross the street.

Balance absolutely fascinates me and I WANT IT! Balance is something in life that most people (those not balance challenged) take for granted and not think about. Just putting on a pair of underwear which was such a simple carefree thoughtless task before has now become something in my conscious mind and a reminder of where I am at.

After swim lessons the other ladies are able to whip on their clothes in a hurry. It never fails that I am most often the last person out of the locker room (if I get out of the pool at the same time) and I have not even showered or combed my hair. I was just trying to put on my damn clothes! To put on my underwear I have to hold on the wall with one hand and carefully slip each leg/foot in its appropriate openning. Then for the pants I must sit down on a bench.

Before I used to be able to run up and down stairs with ease often carrying a backpack or over the shoulder book bag. I have now adapted to loading my one arm with bags and grasping the handrail firmly with the other. Ah going down the stairs...well that is just plain terrifying and I must be extremely cautious (especially if I am carrying something in one hand).

Hiking.....I have always been a person to climb around on rocks and step toward the edge to peer over. I was always confident with my sense of balance and never worried about toppling over or falling of a ledge. Now walking on a flat bed of river rocks is a major accomplishment.

There are others: rollerblading, skiing, biking, waterskiing. There was so much more I wanted to do also.

But just the small things like putting on underwear and walking freely down the stairs without fear of falling. That would be really nice.

Lethargic

Wow! I am really tired today and I don't know why. Yesterday I took a day of rest from walking because I had my swimming class. Today is normally the day of rest but I changed my rest day to Sundays most weeks due to the swimming class. I normally do not get out to walk with the dogs early enough when it is cool and it is hard to walk most often after swimming due to the different coordination required. My brain becomes rewired differently and needs a day to adjust.

I am pretty sore too but I did not swim that hard last night. There was lots of rest stops and instruction between swimming to either end of the pool. I can't tell if I have water in my ears like hearing people. I wonder if other deaf people know if they get water in their ears? I will have to ask.

In any case, I went to bed with lots of head pressure. I tried clearing my ears to no avail. Additionally, I think I might have taken a double dose of my medication. I just could not remember. But I vaguely had a recollection of taking it an hour earlier. I was not sure if I was recalling it from another day. Still better to take a double dose than none as the medicine is trying to save my sight. If I did take a double dose it would make me lethargic so maybe that is what happened.

As to why my body is sore I don't know. I do remember having a dream of running on a beach carrying a heavy water bottle in each hand. While growing up I would have dreams of being chased or physically exerting myself to wake up tired. So maybe it is a combination of everything.

For those who might be kind of freaked about me over medicating, I was on that same dosage when I started the medicine in February of 2005. It did make me extremely tired back then. As the swelling of the optic nerves went down, I was lowered to the present dosage. I did stop for a month in March 2006 but the swelling returned and I have been back on the medicine since April 2006.

When You Least Expect It

Here is a funny story for you all:

I did not get much sleep last night even though I tried to go to bed early. It seems I woke up every couple hours so when 6 am rolled around I was dragging pretty hard.

This morning was our early practice for the marathon. Since our marathon start time will be 7:30 am and we will then proceed to walk 26.2 miles, our Saturday practices start at 7:30 am in order for us to adjust to this schedule.

Anyhow, it was a long practice and then I remained awake the rest of the day by visitng a friend on the way home and doing other errands. With the increase in temperature I became very lethargic when I got home and lied down for a nap about 4 pm. Apparently my nap turned into a 2 1/2 hour siesta as Harley woke me up when he came home. I would have continued to sleep otherwise.

When he woke me up he was laughing because here I was spralled out on the couch in nothing but my white cotton underwear and Team In Training shirt in front of the fan. IT WAS HOT so I ditched my pants!

While I was in this state keep in mind that even a bomb would not wake me unless it shook me off the couch! When I got up and looked at the end table next to the door and noticed a brochure with a man's picture on it. In blue ink was handwritten "Came to your door to introduce myself. Sorry I missed you!"

WHAT?????? SOMEONE WAS HERE WHILE I WAS NAPPING IN MY UNDERWEAR!!????

Because I am deaf people who know me always know to get a hold of me over the computer or text phone first so that I know to look for them and what time they are coming by. Also, I live in a rural area where our house can not be seen from the main road so I never have to worry about anyone I am not expecting coming over. Further, the dogs (even though I can't hear them) bark and most strangers figure it is a lost cause. For example, the mailman does not deliver packages.

So given all of the above, the last thing I expected was to be caught snoozing in my underwear by anybody besides Harley. LOL KUDOS to our visitor who appears to be running for a local office. He REALLY went out of his way in an attempt to introduce himself!

WELL THAT BITES! (Literally)

Gee I just noticed that my 3rd or 4th tooth crumbled apart. I can only guess that it either happened today while I was eating or while I was flossing as the gum area is bleeding.

Wow that material I read about teeth decay after chemotherapy and radiation was no joke! You expect all these things to happen instantaneously but these effects are long term. I read about it while going through chemotherapy 13 years ago and right on the dot the teeth problems started within 7-8 years but rapidly advanced following my radiosurgery treatment in 2004.

It is an ironic thing...dry mouth. Apparently my mouth gets to dry sometimes which increases tooth decay. However, I noticed myself drooling profusely today.

Yeah I have not told your that yet. I need to keep conscious and aware of many things. Drooling is one of them. If I am concentrating really hard on something and don't realize my mouth is not fully shut and especially if I happen to be looking down doing something like chopping vegetables or reading a book, I start drooling on myself like a baby.

A few times I have caught myself doing this in public and startled I quickly concealed my habit and looked around to make sure nobody noticed. Because of this drooling habit, I was thinking my dry mouth habit went away and I started doing behaviors not condusive to a dry mouth habit.

In particular, I had swallowed a large lump of rice from a Thai dinner about a week ago. I literally started choking as the lump became lodged in my esophagus. It felt like I was having a dang heart attack! If you have seen the sequel to the movie "Underworld" where Scott Freeman (who has become a lycan) tries to eat normal mortal food it is like that, I had an incredible pain in my chest and started gagging as I could not swallow the lump of rice. I could not fully lodge it from my esophagus either. For those who do not understand why I am such a slow eater, this is one of the reasons why. If I take too large a bite I either cannot chew with my mouth fully closed or I nearly choke when I tried to swallow such a massive bite.

Anyhow, the tooth must have fallen apart when I got brave and crammed some tortilla chips and snack mix with nuts down my throat. This evening my throat started to swell up and become sore. I then remembered the scratchiness of the chips I forced down the food tube. In the mist of munching and grinding on the crunchies, a piece of my tooth must have broken apart and I swallowed it!

This one is pretty bad and I am not sure what will be done. I was due to have a crown put on this tooth (yes I had a root canal done on it a few years back and never got the crown due to the expensive cost.....AHEM! LET THIS BE A WARNING TO YOU DJ TO GET YOUR BUTT INTO THE DENTIST AND CROWN THOSE DANG TEETH!)

I have a new dentist as of last summer who did root canals and placed crowns on the other teeth that crumbled apart last summer. Last time Harley was at the dentist he reminded him that I have one more crown to put on the tooth with an old root canal. I have a cleaning this month and was thinking about when would be the best time to schedule the appointment for (HOPEFULLY) the last crown I will need. I guess this incident has determined when I will be going in which will be a little earlier than I was thinking.

Gee, I remember when I was a little kid that I thought someone in their 30s was old. LOL then I became a teen and thought wow 30s must be the life! Now I am back to thinking I often feel very old in my 30s with all this stuff that happens. I keep falling apart and finding ways to piece myself back together and salvage what is left!

Running Update

If you have been reading you know my difficulty with running. Last spring I found out that I was improving my balance to the point that I could run at least 3 miles. One day I decided to run longer than that which worked out until my drive home where I got such a bad migrane and pain behind my eyes that I vomited something black (which doctors determined might have been dried blood from the nose bleeds I was having).

As it turns out my optic nerves were swelling again and I had to go back on medication. My one doctor told me that the running might be causing too much pressure to build up in my brain. Okay but I was determined to run my 3 miles in the Relay for Life (to which I collapsed for a short bit afterward.....tell ya later).

In June I fell on my tailbone and bruised it very badly. It has taken this long for it to heal so I have not been able to run at all. Then I began to experiment at Saturday practice over a week ago. I wanted to do 2 laps around the park and it seemed like many people were running around me. Therefore I sort of jogged in little spurts (for only about 10 minutes) but it made me dizzy.

On friday night (not sure exactly) Harley and I took the dogs walking but it was an hour before sunset and the squeeters were out. Thus we had no choice but to run on the way back. I just kept running and reached the open field before I thought I would (we had to run past the stagnant ponds and the creek which are prime breeding grounds for the beasts). I think I ran for about 18 minutes and then I walked.

Yesterday however, I did not have the dogs with me so I decided to try to go for a half hour run. I ran for about 32 minutes and walked the rest to make it an hour. Fortunately the weather has cooled a little and there was a slight breeze. I did not seem to have pain but the coordination for running was challenging. Yet I was able to run for 30 minutes which I have not been able to do for over a month!

Here is a link which explains one of the reasons I cannot run too far and why at certain times I have difficulty with night driving. The best way to describe my life in motion (walking, running, riding on a bumpy road) is like constantly viewing life through a home video camera while in movement. Sometimes (depending on what shoes I am wearing and the terrain) life is like living without shock absorbers (like riding in a car with no shocks). I first noticed this maybe a year or more ago while walking down to the mailbox. I could feel every little bump and pounding of my foot on the gravel drive. It was as if I lost any sense of shocks on my body and the vibration resonated through my spine shaking my skull and eyes.

http://www.tchain.com/otoneurology/disorders/bilat/bilat.html

I have learned to get used to this but yes it is very tiring at times. It takes a GREAT deal of energy and concentration to adapt and get through it.

Swimming Lessons

LOL Yes I am like a kid again starting over. I am taking swimming lessons and even with being deaf these are the best swimming lessons I ever had in my life. I waited a year to get into the class as they fill up fast and I was not quick enough to sign up (there is actually a waiting list). The classes are offered through Team Survivor Northwest which is a fitness program for women cancer survivors and patients. The mission is to keep women in a healthy life style and get them active again.

My classes are every Sunday at the Mercer Island pool and I greatly look forward to learning more from our excellent coach "Ed". There are two pools a) an olympic size lap pool and b) a shallower pool which is half the size. Those who are advanced swimmers practice laps in the olympic size pool. Most if not all of those women are training for the Danskin Triathalon in August with coach Mary of Mary Myer Fitness. The rest of us are in the beginner class and we are taught by Ed who if I understand correctly has been a collegiate swim coach. He is awesome! If you did not know better you would think he was born in the water and was a "merman".

Now some of you who have known me a long time might be sort of confused (especially if you grew up with me or know my history with the water). I have always been a water child and would have been happy had I evolved a set of gills. My favorite memory of the water while growing up is jumping off the ford river bridge in the icy ford river in early summer/late spring and also playing the rock race game at "Dut's" swimming hole. What is the rock racing game you wonder? LOL Well being a rural country bumpkin we were good at using nature to create things to do. We used to find a heavy rock (not too heavy but just enough to keep you at the bottom of the river) and race across the river bottom. Yes sometimes the depth must have been 3 to 4 feet over our heads! We would hold the rocks and scurry across the bottom of the river holding our breath to see who was the fastest. What a blast!

In college I took an aquatics swimming class (to meet one of my PE requirements) and then went on to take Lifeguard training, PADI basic open water (scuba) certification, PADI advanced open water certification, PADI rescue diver certification and specialties through SSI in night diving and low visibility. In addition, to get some more dive time under my belt, I volunteered as an assistant for the diving organizations PADI, IDEA, and NAUI.

So why the heck I am in the beginner class? The tumors destroyed a great deal of my vestibular function. I was absolutely shocked on the third day of treatment to almost drown in 4 feet of water at the hotel pool. I loved just playing around in the water and decided to close my eyes in the chlorine water and do a summersault. Well the summersault never happened and with my eyes shut I could not stand up nor find the surface. Desperate for air I had to finally open my eyes to determine why I could not find the surface in such shallow water. I was alone but thanks to my history with the water I was able to stop panic and think my way out of the situation.

I have tested it out in a pool over the past year. If I close my eyes I cannot complete one full summersault rotation but with a mask I can do 6 perfect summersaults in a row on one breath. The class is to learn the proper technique of swimming I never learned in order to be confident with my skills in the water. When I see water I still long to jump in but the incident brought forth some aprehension that I am working to overcome through greater confidence in my ability.

I love the water and I am not willing to give it up so easily! That is one thing I have learned about NF2. I have experienced many unexpected changes but with learning the right adaptations I can continue to have an active lifestyle.

OUCH! (like the way ET said it)

Photo taken by Harley Dufek in Ochos Rios, Jamaica on June 27, 2006 aboard the "Sinara" Trimaran.

Check out that right knee (the one closest to you in the picture). Actually it does not look too serious of an infliction in the photo but it ended up being pretty bad.

Seeing as our mission was to snorkel the whole time ashore in our first port of call in Labadee Haiti, I did not bring my walking stick with me. For one I did not want anyone to steal it while I was in the water, and secondly I did not imagine I would need it.

After an hour or more of snorkeling we decided we better take advantage of the free lunch provided at the island bbq as it would be awhile until dinner. In our hurry to be the last ones to grab some food before they shut it down, I tripped walking over the lumpy yet hard sand dirt road. Unfortunately the sand was rather abrasive due to its makeup of fine coral particles. Therefore it left my knee an awfully bloody mess.

What was even worse is that this happened in front of duck boat (busload) of people. Being on vacation I am sure they thought I was some fleusy who had a little too much rum! LOL I arrived at the bbq with blood dripping down my leg and had to get a cold glass of ice water and a napkin to clean it up (the ice water is safe in that spot as the area is owned by the ship and all the food and water is provided by the ship).

When I fell I did not imagine it would be such a nasty wound. Each time I went snorkeling it got worse and a big ugly scab formed with a rash around it when I returned home. It is gone now but a definite pink scar the size of a quarter is in its place to match all the bruises on my body.

Falling injuries are quite common on a daily basis but often I forget about them unless they are more serious such as when I fell on my tailbone down the stairs and falling on something abrasive such as coral sand. Bruises will show up on my body that I cannot account for as I get used to bumping into objects and falling as a normal part of life now.

My lastest falls (close calls) yet not as serious include: falling like a tree on top of our luggage behind the antique wood frame couch in our hotel room (I bruised and scraped my armpit area), slipping down the stairs again last Sunday trying to hurry to my swimming class (fortunately I did not reinjure in tailbone but formed a large bruise and scrape on my forearm), falling yesterday on a pile of tools (including some kind of small router saw that was fortunately turned the opposite direction) in the spare bedroom filled with things we have no place for, and today I did something on the stairs that hurt momentarily. I know I will have a bruise on my shin as I whacked it hard going up the stairs. The rest of the details and my other bruise incidents have left my memory.

ILY Snorkeling - (a sneak peak)

Photo taken by Harley Dufek on June 26, 2006 in Labadee, Haiti.
ILY- means "I Love You" in ASL.
Here is a sneak peak at my very first reintroduction swim in the ocean since the first day of my treatment in July 2004 when I went boogie boarding off Santa Cruz beach. The photo was taken in the waters off of Labadee, Haiti which was our ship's first port of call.

Although I needed assistance in and out of the water, I was thrilled to be able to snorkel and finally return to the underwater world which I love so much.

In the caribbean it is the law that you have a snorkeling vest so that is the black thing draped around my neck. I did not mind as I was able to float along over everything without having to worry about swimming. It was difficult at first to remember that I was not diving. The vest sort of gave me the feeling of a scuba BCD so every now and then I would forget and put my whole head under the water while still breathing on the snorkel. Hehe...nasty awaking swallowing that salty water!

I have not realeased the photos yet (I will soon) but I did suffer a significant facial paralysis for more than a year. At the worst point, I could not move half my face and I was concerned back then (not only of looks) but of whether I would be able to breath off a snorkel or regulator. For a long time I did not want anyone taking pictures of me and I did not want to show anyone photos of me. Thus the long absence of photography on the blog for a period of time.

Fortunately I have regained most of my face back (there is still some facial paralysis which you will notice in pictures of me.....most notably the framed formal anniversary photo I posted). However, I have gained enough function back now to breath on a snorkel with ease. I can even sip on my hydropack now (I am pictured wearing it in the Mayan Ruins photo of us) without having to hold my lips shut. We will see how it works with a scuba regulator when I am ready to try it out.

If all else fails, the snorkeling worked out great for me (with the exception of getting out of the water on shore.....I cannot stand up in water at my knee level or below!). We snorkeled for I think 2 1/2 to 3 hours in Haiti and then went from a boat in Jamaica and Grand Cayman which was nearly not long enough.

An addition to the link of the last post "Baffled"

In the last post I included a link which brought you to a page titled "How deaf people hear".

Unlike most deaf people, I and many others with NF2 hear nothing at all. Our world is completely silent except for the occasional tinnitus (ringing in the ears....noise in the head) that visits us.

Therefore, I would like to inform you how I have adapted or how to get my attention.

Waking up:
I would not even wake up if a bomb exploded outside my house (unless I felt the vibration which would have to be rather intense). Therefore I have a special alarm clock called a "bed shaker". LOL No it is not the same as those coin operated beds you see at cheap motels in the movies. A flying saucer shaped device plugs into my special clock. I put the saucer under my pillow and it vibrates the heck out of my skull when it is time to get up!

Phone:
I don't answer it because I cannot distinguish between a call for me over relay or a call for Harley. If it is for Harley and I answer it there is no typing to read on my phone and it is a dead end for me. I DO have a light flasher Harley installed to the ceiling of my computer armour. When the phone rings this light blinks and and off. If the call is for me and someone has called over WA Relay for the Deaf, an operator will type a message for me that I will read on a small screen on my phone. This special phone is mounted next to my computer and if I am at the computer I can call the person back right away.

Door:
It used to be that the dogs alerted me by barking but I can no longer here that. Since we live rurally we do not get many visitors so I do not have a light flasher for the door. I usually know when someone is coming by and I can watch for them. My computer is in the loft overlooking the front door. When Harley comes home, I can feel the vibration of him closing the front door through my feet (If I am in the loft). I don't wear shoes in the house (only barefeet or slippers in the winter). This also works if I drop something bigger than a piece of paper in the house. I can feel the vibration through the floor. Note: While on the boat my stateroom had a door flasher. There was a device or box that had a seperate light for each thing (phone, alarm, door, fire). When the lights would start flashing I would look at the box to determine if someone was at the door, if the phone was ringing, or if there was an emergency.

Getting my attention:
IT IS EXTREMELY IMPORTANT TO TAP MY SHOULDER GENTLY AND NOT TRY TO YANK THE DANG THING OFF! SOMETIMES I MUST FINISH WHAT I AM DOING AT THE IMMEDIATE MOMENT SO IT DOES NOT LEAVE MY MEMORY. If I am in somebody's way at the store I greatly appreciate a polite tap instead of being rammed in the rump with a shopping cart. Yelling and stomping as loud as you can would be futile since I hear nothing. If possible the best method is to flash the lights on and off as long as it is safe (meaning I am sitting down and not trying to walk down stairs or something). Deaf signers are also used to routinely getting each others attention by waving (small motion like you need something if the person is close by). Big waves are fine if there is a great distance between you and the deaf person.

Babies crying:
The ASL GLOSS "Ain't Got None!" Many people would find deafness in this case a blessing as I am NEVER annoyed by ANYONE'S cyring baby or any other loud disturbing sounds. ;)

Baffled - Can you drive?

Starting this winter/spring I started bringing my dogs in to the pet store to have them washed. For one, we only have cold water outside and I get completely soaked which does not feel too nice when it is 50 degrees or less outside. Yet most importantly, my balance has deteriorated to the point that it is challenging to bathe them and can be dangerous for me if I fall.

Last time I tried to take them upstairs in the shower (winter) did not work out real well. Seeing we only had a working shower faucet that was not the kind you can take off the wall and spray around, I had to lift each dog onto their hind legs to rinse off their belly and chest area. Needless to say I was pretty bruised up the next day (especially my feet from being stepped on).

On Sundays and Mondays is a special deal and they clip the nails and brush their teeth too. I was thinking in the summer I would try to wash them myself outside but they like being washed at the pet store and the dogs never let me brush their teeth anyhow. Thus I determined for the convenience, the included teeth brushing and nail clipping, the time and hassle I save, for my safety, and for such a great price I would continue to take them in and have them bathed.

Back to my bafflement......when I returned to pick them up the ladies communicated to me via paper and pen. I make a habit of bringing writing pads with me when I go places. They are ALWAYS nice to me but clearly I may well be the first deaf client they have had. While one lady was busy grooming (trimming) a small dog, the other girl working there would write to me what she was saying or asking.

The girl wrote to me "Can you drive?". I was not sure if I understood the question correctly. There was a pause in my response which I am sure was awkward for them. During that time I was confused why they would ask me such a question. I thought back in my brain "Did I tell them I have NF2 and that yes I was sick sometimes and I could not drive". No I don't remember telling them that. So then I dug deeper into my memory and recalled that I told them about my balance problem and that is why I took the dogs in to have them washed. But why would that prohibit me from driving? Then I thought that I must be having a really off day and maybe I am stumbling around as if I am drunk! What a horrid thought! I was thinking how in the heck did they think I got the dogs there. Maybe they thought I walked them but I had mentioned when I came in that I was a few minutes late due to all the road construction on Redmond/Fall City road. Gosh I must be stumbling around and they think something is wrong with me!!!!!

In all these scenarios I schemed up in my head, I NEVER thought the question was posed because I am deaf. In the two years I have been deaf and the 4 years prior to that when my hearing digressed and I was HOH (hard of hearing), the question has never been asked.

After my pause and look of confusion I questioned "Yeah. Why wouldn't I be able to drive?" Uncomfortably the other girl translated on paper that the other woman thought I could not drive because of my hearing. Shocked and taken by surprise (I really was not prepared for this kind of question) I defensively retorted "It is not illegal you know!". I have to admit that my protective wall immediately went up and proactivity was on its way out the window.

I imagine that my facial expression exhibited the feeling of being offended. I just was not sure how to react. Perhaps they read my face and questioning look of "WTF?" and so the woman went on to inquire what she meant was how do I hear sirens or know that a cop is behind me. My response was "How is it any different than someone blaring their car stereo and cannot hear the sirens?" I then realized this was an innocent inquiry and not an attack on deafness. Therefore it was my responsibility to educate. I informed them that my world is very visual and while driving everything is visual so we SEE the lights instead of hearing them. I think maybe this bit of information hit home as they informed me it was something they were just wondering about it.

Later I had an instant messenger conversation with one of my good friends who also has NF2. He has been deaf for 8 years and lives in a much bigger city than I do. Interestingly he informed me that he has been asked this question countless times. He even feared he would loose his driver's license once he became deaf. I don't recall ever thinking about losing my license due to deafness.

He also went on to tell me that a study implemented found deaf drivers to be safer drivers because they were more cautious and visually in tune to their surroundings.
(Click the link in the post title above to find out how deaf people get along without sound)

Contrary to popular belief, "Deaf people are among the best drivers."
"Deaf people make better drivers than people with normal hearing -- and they could be the world's safest motorists, a fascinating new study shows. "That's because they compensate for their disability by concentrating on watching the road, the research showed. "'They've got it all over us hearing people when it comes to driving," said a spokesman for the National Association of Driver Educators for the Disabled. "'They've always taken in everything with their eyes and as a result they tend to see everything when they're at the wheel." "And not being able to hear ambulance and other emergency sirens doesn't make deaf drivers unsafe at all. The study found that deaf drivers check their rear view mirrors frequently and can tell immediately if they should pull to the side of the road." -- Weekly World News, Lantaria, FL, April 25, 1995.


The things you may have never thought of!

Holy Heat Wave!

WOW! It is unusually hot here! This morning practice was fortunately early enough before it became TOO HOT! I walked 4.81 miles in an hour and 10 minutes. For the first time through my training I carried water with me AND drank it!

This morning I checked the forecast to know what I should wear. It had said that it was already in the 70s before 8 am and the high was to be 90 degrees. I just checked the thermometer hanging in the kitchen window and it looks like they were correct. It is so hot that it is hard to breath and I keep napping since I got home. I just cannot seem to stay awake in this heat.

I am sitting here right now with a cold gel pack (for a sports injury) on my head. No I did not injure my head fortunately but it is the only method I can use to stay alert. It is hard to think of what I am doing and it feels like my brain is frying! Since this in an insanely bizarre occurrence, we don't have AC because we don't need it. The NW must definitely be setting some kind of heat record here. Here is the weather forecast for the town nearest to us: http://weather.yahoo.com/forecast/USWA0059.html

Yesterday was worse! By 11:30 am it was 89 degrees and the truck temp read 106 degrees at 4:30 in the afternoon. I waited until the evening hoping it would cool so I could take the dogs for a walk. Never happened. I was supposed to also go to an ASL social but the heat made me fall asleep when I lied down to rest my eyes for a few moments. Fortunately yesterday was a day of rest on my training schedule. I am really hoping it cools down tonight so I can take the dogs for a walk.

Keep cool!

Us Now - Anniversary Photos

When we were married we made a decision to travel every year as that is one of the things that we like to do and is really important to us. This year for the first time we went on a cruise with friends. They had invited us almost a year ago and I was a little hesitant to make plans so far in advance given the situation. In my mind I wondered if the trip could be sold if something happened to me, if someone could accompany Harley in my place, or if he would even go if I was not here or could not go with him.

Well I made it to the trip and we had a fabulous time! I will include more photos when we get them from our friends. It was the first time I have been swimming in the ocean since treatment. We went snorkeling in Labadee Haiti, Ochos Rios Jamaica, and Grand Cayman. I literally did not want to get out of the water!!!

We never had an engagement photo taken of us. On the boat they took SEVERAL photos of us. The one with the sunset is from the first formal dinner night. The one on the right is from when we just got off the ferry in Playa Del Carmen, Mexico to visit the Mayan Ruins. The center photo we purposely had taken. They had a free photo sitting on casual night and we thought "What the hay! Let's try it out!" Unlike the other pictures, the photographer for this last sitting takes a little bit more time and sets you up into a pose. There were a couple shots of us and this was our favorite. Thus this is our anniversary photo to make up for the engagement photo we never had.

Six Years Ago Today July 16th

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Lattice Face - A Continuation of 2 Years Ago Today

Photos of me after my cyberknife treatment sessions on July 14, 15, and 16 of 2004.

The above photos of me were taken after the cyberknife treatments. The mask is so form fitting and tight that lattice marks formed on my forehead temporarily. However, the mask was not uncomfortable. Before my first treatment they made a mold of my face using the blue mask you see pictured in the prior post. Many people who have had the treatment describe making the mask as a similiar feeling to getting a facial. I would not know as I never had a facial done before. What I can tell you is that it was warm and wet as if somebody was applying a polymer type of wash cloth to my face. Because the mask has holes, I was able to breath out of it freely.

Soon the mask dries into the uniform shape of your face and is no longer flexible and soft like silly puddy. The best analogy I can think of for it is when people make those egg shape crafts out of big balloons. You know the kind where you stick string in glue and then run it all over the balloon so you end up with a delicate looking egg shape that has hardened? Well I guess it is kind of like that.

I did not experience any pain during the treatment except for the weight of my head/skull being pressed upon the small pillow for so long. I have no idea what the time frame was as I was cut off from the world both visually and auditorially for 30 minutes. I estimate it started giving me a problem within 15 to 20 minutes as when I reached the point where I thought I could no longer stand it, the treatment was over and they were removing the mask. What would happen is that it felt like the back of my head was burning up or on fire! It has also happened to me since then in longer MRIs. It is caused from not moving the head and the weight of the head pressing on one spot. I was given a soft pillow pad under my head but if you have a sensitive scalp it does not matter.

I can't remember if it was the first or second treatment but at one point I was lying there alone in the darkness and quiet thinking about the radiation beams going into my brain. I had a horrid sensation that this was beyond my control and the beams of radiation were like little bugs scurrying randomly and sporatically around in my skull. I was terrified to move even the slightest hair for fear that the radiation bugs would burrow into a wrong part of my brain. It is a weird thing to hand your brain over willingly and know that once it has started there is no turning back. An organ is one thing but your brain is.....well heck it is your brain!

There was an intense amount of radiation delivered to my brain (20 gray/rads each treatment) but the dose was dispersed among several entry points of my skull so that the full 20 rads was delivered to a precise location within a mm of accuracy (the tumor or as one of my friend's had described it "one of the evil twins".......my description "brain moles"). Therefore the rest of my healthy brain tissue was subject to minimal doses. But still, the thought of cooking your brain can be a little unsettling. Yet in my personal opinion still ......It sure beats having your skull cracked open and disected apart (open brain surgery). It is no secret that I have and still do dread and fear brain surgery.

Afterward I was given a steroid pill (decadron) and advised to drink lots of water. The treatment dehydrates you some (hence the markings on my face and the dimples which are greater than what they are now even though I have lost weight).

When I went into the open sun it was like a bolt of lightening struck my eye sockets and head. I had a massive migrane which I thought was from forgetting my sunglasses. On the first day I had to stop at Kmart in Santa Cruz and buy some. I think I was also very cranky and impatient.

I also got incredibly nauseated and asked for antinausea medication on the 3rd day of treatment. The first day I felt pretty crappy on the drive to Santa Cruz but felt better after getting into the water. On the second day our friends KC and Dianne joined us. When we drove to San Francisco I literally did not think I was going to make it there. The short half hour drive was unbearable and we had to stop by the water overlooking the Golden Gate Bridge so I could get some air. It was actually rather cold but I was so sick that the cold air is the only thing that gave me some relief. I stood out there in my shorts for a long time until I had the chills. I have no idea how long it was but we watched the sunset (what I could concentrate on of it).

Take a look at the link for a small slide show of a few photos I have. The one of me standing in the tree is when I still had my balance and could freely climb a tree. I can no longer do so unless someone helps me in or out or there is some easy safe way for me to do so.

http://pg.photos.yahoo.com/ph/bluediverbeck/album?.dir=/815fscd&.src=ph&.tok=phlAIMFB4MOkNAda

Two Years Ago Today

Picture: Larry (the cyberknife radiosurgery technician) fitting me for the mask which holds my head in place. The mask firmly attaches my head to the table so that no movement can be made while the robotic arm whirls around my brain using 3D image mapping to zap beams of radiation through my skull (calculated via physics) so that delivery is to the target area only.

Two years ago today:

• I was in California at Stanford University Medical Center.
• I visited Santa Cruz California and enjoyed body surfing and boogie boarding one last time.
• I splashed into the waves of the ocean with complete freedom for the last time.
• My mom hugged me as if saying goodbye. Giddily I scoffed saying "Geez mom I will be right back." I just did not know that life as I knew it was coming to closure, she was hugging the old me goodbye, and that a new me was about to be reborn.
• I did not know the extent to which my life was about to change.
• Beyond my control I surrendered into a realm of no sound or sight for 30 minutes. It is one thing to live without sound but not having either for 30 minutes can seem like a long time and be almost unbearable. It is a challenge to keep thoughts positive and keep the brain mentally sharp and productive during that time.
• I made the most difficult decision of my life. I handed my the essence of my life into the hands of a team of strangers. I surrendered my brain finally into the care of people who I had just met. I let it go and I let God.

Slip Sliding Away....A Hard Lesson

Remember that song from oh I don't know the 70s or 80s?

When I was a kid I remember my mother was singing that song while we were hiking along a river bank and well...yeah she started slipping sliding away in the the mud! LOL I have learned now that this is no joke!!!

Back in June I had a deadline to get out my fundraising letters for the upcoming marathon. Well if you know me you know that I am not a fast writer like my sister (who happens to be a TV journalist and reporter). It actually takes me a long time to think of what I am going to write, to start it, and then once it is written I take a long time tweaking it. In addition, it is very difficult for me to handwrite something (thanks NF2) and I had to hand address 50 letters! It took FOREVER!!!!!!!

Anyhow, as a result I stayed up through the night. When I am more tired or just wake up my balance is HORRIBLE!!!! I can't even remember now but as I was walking down the carpeted stairs of my home in the early morning of June 15th I literally SLIP SLIDED AWAY! Perhaps I was too tired to catch myself on the railing like I normally do or maybe my legs just gave out. I really can't remember. Yet, I DO recall landing on my tailbone HARD....like scary hard!

I have never fallen quite that hard before and I was in pain sleeping. I could not lie on my back and to turn either way in bed sent sharp pain spasms through my lower pelvis area. In addition, it hurt to bend or sit which reminded me of the sensation I experienced immediately following a bone marrow draw.

I still went to practice that evening but was rather stiff. Fortunately a teammate was interested in communicating with me and learning some sign so I was able to walk slower. I think I took friday off as we left to visit my parents. Saturday the 17th it was not getting any better and I had a hard time keeping up with my dad and Harley on our walk with the dogs. Still in pain on Sunday (father's day), I was still committed to walking the dogs and I could keep up with my dad and Harley that day.

On Monday I went into the Urgent Care center for xrays as I began to have a deep seated fear that I may have damaged myself seriously and that I better get the scoop before I do something irreversible on our upcoming vacation. FORTUNATELY nothing was broken or fractured!!!!!! I just had an extreme bruise of the coccyx which takes weeks to heal.

The doctor at the center was going to prescribe pain medication but I already take a medication that makes me drowsy enough. I did not feel like spending my entire vacation in a lethargic or catonic state. Therefore, I requested some celebrex which helped greatly when I took the medication but I am still sore.

This thursday will be 3 weeks since the incident and although I have been practicing for the marathon and I do not experience sharp shooting pains, I am still sore. I only have 2 celebrex left and I am clearly going to need to get some more as I have not completely healed yet.

For those who have been around me over the past year, now you know why it is terrifying going down the stairs for me (especially if the stairs are concrete!!). Today I had a jolt of fear run through my spine as I again nearly slipped going down the stairs! Luckily I was able to catch myself and prevent the fall by bracing myself with my arms between the wall and handrailing. My stomach dropped at the moment as if I had near head on collision with an automobile. That is how scary falls can become when you are balance challenged and hurt yourself.

For this reason, when I go down the stairs I exercise great caution and probably look like an elderly person. In my house however, I get a little too comfortable running around in my bare feet. I used to be a person who would run up and down the stairs so it is hard to not forget what I could do before and want to jump back into my old skin (self).

Relay for Life Photo Slideshow

MY EARLIER MESSAGE: HELP! I can't remember how to create a slideshow to share with you. I have all the photos from the Relay for Life event but I can't recall how to set up a slideshow so I do not have to post one at a time.

Someone who is really savy at blogging and photos please send me your advice under comments.

Thanks to my old friend Jeff Lozon from back at NMU, I was able to figure out how to setup a slideshow again. Jeff if you read this you may be baffled. For some reason I got an invite from you to yahoo photos 360 but you don't have any photos. Anyhow, by going to the link and dinking around in there, I was able to find my previous albums and that of my sister's and brother's. Fortunately I was also able to figure out how to add new photos and create new albums and slideshows. So thanks buddy! :o)

Ok I am creating the slideshow right now. There are lots of photos so I might not be able to finish tonight and tomorrow is my anniversary. I will post what I can and add more later in the week.

Please take time to look at my fantastic group of friends who comprised our team. I will add their names to the photos and descriptions later in the week also.

Note: We are all decked out with tropical shirts, flower lais, grass skirts, boogie boards, and palm trees as our team name and theme was "Guilligan's Cancer Free Island". LOL The palm trees got knocked over from the wind so I kept joking around that we had a hurricane on our island. We really had a great time!

Thanks Diana for your camera to take the pictures and for my teammates who joined in the fun and cause with me: Diana, Laura, Yumi, Kristy, Melody, and George. Special thanks to Laura's children Cody and Destiny who also helped us out and were a part of the team. Unfortunately we did not get any pictures of them in the great shirts Laura had made for them. The shirts have the names of all their family members who have gone through cancer and it is written in honor of them.

Cody is 13 and Destiny is 8. I was completely touched by their dedication and participation in this event. On Saturday May 20th Cody walked 10 miles in memory of his grandfather who had recently passed away. In addition, Destiny made me a very special luminaria candle bag (which I have kept) in honor of my battle with cancer.

It was the dedication and commitment of all these great friends who made the essence of our team. Their positive charm and character encouraged everyone there and we were recognized for the best team spirit. I thank you all for making it such a memorable event!

GREAT NEWS!!!!!!!

I did not have a chance to write about it but a week ago friday my doctor emailed me back with fantastic news! My bones look great first of all and have not become brittle or damaged by the long course of steroids I took from July 2004-April 2005. YEAH!

The other great news is that my blood work came back looking great. My blood chemistry is back in the normal range for the most part which means I am still in remission and the Hodgkin's Lymphoma has not returned. I am a bit iron deficient which may be from the nose bleeds I was experiencing. I have been taking a supplement and trying to consume things with a higher iron content. I have been recommended to take a "slow release" iron supplement (an overdose of iron is not good for you either) and will get another blood test in 8 weeks.

I also had my thyroid checked as the condition runs in my genetics. I do get tested for it often and for now I seem to be free of the condition.

The news lifted my spirits and made for a great weekend. My mind was put at ease about that worry so that I could focus on my mission ahead: training for the marathon.

Hope you all are having a nice weekend! :o)

Still Here!!!!!

Hey TJ and anyone else reading!

I am still around. I have just been really busy since the Relay event. The Relay for Life went very well! We had a fantastic team! I was waiting to write about it until I got the digital photos from a friend.

After Relay I had a job meeting about possibly teaching online (telecommuting from home) in the future, 2 doctor appointments, a bathroom remodel project in which I am responsible for the painting scheme (which is proving to be more difficult to do now with my imbalance, uncoordinated hands, and lower tolerance for patience), and finally my Team in Training practice started this week in which I will walk a marathon in November to benefit the Leukimia and Lymphoma Society.

I did find out last week that my blood test in April revealed I am slightly anemic which caused a little bit of anxiety for a few days. My Hodgkin's disease began with a slight anemia and my grandfather is currently battling a blood cancer. Therefore, any type of abnormal readings make me a little uneasy. Once you have had cancer, the thought of recurrance is always in the back of your mind.

I have had some wounds that have healed nicely though so that is a good sign. After 3 pokes at the blood lab for another test, they were able to draw enough out of me for a more updated CBC (Complete Blood Count). I am anxiously awaiting those results this week along with the results of a bone density scan I had done on Tuesday.

I wrote a post yesterday morning but saved it as a draft and never published it. It was about my reflection of doing the Relay that occured to me when I saw a cancer patient at the medical center on Tuesday. I am happy and feel that I am doing good things. My life keeps me busy and I always strive to get the most out of it.

Okay. I need to get to bed as I have a big day tomorrow with many tasks that must be done. Saturday I have a training session very early in the morning in Seattle and after my training I plan to meet up with my signing friends at the annual Deaf and Deaf Blind picnic in West Seattle.

Have a great weekend and TJ thanks for letting me know somebody is reading.

- Beck :o)