Tuesday, March 25, 2008

"You Should See What I See"





The quote for this post is from actor Anthony Michael Hall in the TV series the "Dead Zone" which my friend Mark with NF2 and I are fans of. I think we enjoy the series as we can relate to the man "Johnny Smith" in the story. What happens is that this man Johnny Smith has everything going for him until he is in a terrible car accident one night resulting in a serious brain injury which leaves him in a coma for 6 years.

He awakens to find that while he was sleeping, life kept going on without him and everything has changed to which he must adapt. At first the change is very difficult and people see him differently, some even fearing him for not understanding his situation. Further, some ridicule him as being a weird crippled guy as he is left with imbalance after the accident and needs to use a cane.

Despite the tragic loss he suffers, "Johnny" learns to accept his fate and channel the gift of seeing things others can't (psychic ability) for the betterment of humanity by saving people. The whole theme of the show is how one man endured an entirely horrific loss leaving him with a seemingly impossible situation but found a way to make lemonade out of lemons. At the introduction of each show, he briefly explains his story and then he reaches out his hand toward the screen and says "You should see what I see".

In a way, that is what has happened to those of us with NF2. After awhile, you learn to adapt and find enhanced senses which you may have not fully utilzed before just as Johnny had learned to tap into a part of his brain which had been lying dormant before the accident. For me, my sense of smell, sight, and curiosity have heightened. Although always naturally a visual learner, the details of things have become more visible/noticeable with the absence of sound.

With this attention to details and enhanced curiosity, I have developed a fun new way of conducting an Easter egg hunt. Well it is also an adaptation of the brain as I have suffered short term memory loss following my radiosurgery treatment in 2004. Chances are if I were to hide real hard boiled eggs without keeping track of their locations, we would have the stink of a forgotten one reminding me of its location 2-3 weeks down the road. Hehe - This happened when I was a kid. One of my parents hid the Easter eggs (oops......I mean the Easter bunny forgot about hiding an egg in an old shoe of my dad's tucked away in a hall closet). A few weeks later the closet reeked of a horid rotten fart!

Back to my story and the relevance to the title......as I was saying, I created a unique way of conducting an Easter egg hunt with a method to keep track of all the eggs and with no stinky smells. (chuckle) Instead of real eggs, I use fake eggs and write little clues in each one leading to the location of the next. Not only does it exercise my brain by thinking up the clues but I notice things that I had not before. "Where is a good hiding spot for this egg to which I can write a clever clue?"

My sister loves it and I would venture to say she enjoys these egg hunts as much or more than when she was a kid. My mom always seems to want to be a part of the scavenger hunt too. This is the third year I have made it up each being at a location where I have not resided so it has given me an opportunity to seek out and discover things I might normally not. The first year I created it at my parents home when they were living in Moses Lake, WA. Then last Easter we flew out to where my sister and DJ were living in Boise, Idaho. This year was the best of all as we were invited to Dave and Christie Hammond's (DJ's parents) beach house on the Oregon Coast. (It is where the photo was taken of me in the main column of this blog.)

Christie I just love your attention to detail and all the interesting artifacts you have carefully placed in this relaxing get away. Each time we visit is a fun exploration and new things are discovered that may have been missed the time before. For the beach goer, it is like being an archeologist or anthropologist wandering through the New York Museum of Natural History. Being there for the egg hunt was a perfect excuse to share these wonders with my family! So thanks!

For the first year, my brother and his wife were able to join us and I think they got into the egg hunt too.

Monday, March 24, 2008

Do You Know My Name?

I have been called by many names. My real and legalized name is Rebecca and it is the name I have used most of my adult life since entering college. While growing up I was not overly thrilled with my birthname and had people call me by the nickname Becky.

During art class in junior high I had a teacher who liked my name Rebecca and told me I would probably change my feelings about my birthname as I grew older. I recall him telling me about famous women who go by the name Rebecca and not Becky.

Throughout my life leading to deafness I have had a number of hearing nicknames given to me: Becky, Beck, the Beckster, Beckaroo, Beccaboo, and some preferred to call me Becca, the shortened version of Rebecca.

In the deaf culture there are no Mrs.s, Mr.s, or Ms.s. Although in a hearing classroom I was known as the teacher "Mrs. Dufek", in a deaf classroom I would only be known by my first name and then a special "name" sign instead of spelling out my whole name. These name signs are given by other deaf members or deaf students.

Because at first I found fingerspelling "Becky" more challenging than spelling "Rebecca" even though it is longer, I have always been known as "Rebecca" in the ASL and deaf world. My name sign was given to me by a deaf friend, one of my former ASL teachers who is among the first deaf people I met in the state of Washington. We met when she was sent to my house for the state telecommunications distribution program providing special phones (a TTY or VCO phone) to people with hearing loss. Back then I did not know any sign language and years later we reconnected at the Hearing, Speech, and Deafness Center in Seattle where I tooki a refresher ASL class with my husband and our friends KC and Dianne.

At the time, I had a very severe/profound hearing loss which classified me as deaf but I did not realize it yet. I had held off taking ASL classes due to the demands of graduate school and student teaching which had me going to various schools in the Seattle and Eastside area with no extra time to take sign language courses offered outside of the University. Thus, when I picked it up again 3 years later, my hearing had dwindled to zero percent speech discrimination and for all intent purposes I was clinically deaf but trying desperately to function in a hearing world.

In April 2004 after graduation, I picked up where I left off in 2001 with sign language by taking a refresher class before continuing on with college accredited ASL classes. (Yes, I took "lip reading" which is more correctly known as "speech reading" at the same time interestingly but that is another story unrelated to this one. Most people wonder and most people ask if I read lips and that is why I mention it. NO! I DO NOT READ LIPS IN THE WAY YOU WOULD ASSUME SOMEONE CAN.) So back to my story........I took up learning sign language again 3 months before becoming completely deaf. Within taking that class and becoming aware of my deafness, is when I acknowledged myself as a member of the deaf community...more precisely known as a late deafened adult for me.

Karen, my teacher, had assigned me my name sign. Generally in the deaf community one fingerspells out his/her name upon first meeting people and thereafter the person is known by his/her "name sign" which is much shorter and faster to sign. Because of my long wavy hair, Karen selected the letter "R" for "Rebecca" squiggling down from the top of my head alongside my face.

At first I was not too sure about the selection wondering how it would fit me if I had lost my hair due to treatment for my brain tumors. Then again, the choice could not be more perfect to define me and describe the trials I have been through. Without fully knowing what my hair has meant to me, Karen selected a name sign more significant than she realized.

I have only had short hair twice in my life: once was in high school when my mom took me to the beauty school for a haircut and perm where the beautician became overly scissor happy mutilating my long precious locks into a short sort of afro, and the other is following chemotherapy. Even though I was able to keep most of my long beautiful hair due to freezing the hair follicles, the hair became brittle and split from the drugs and later needed to be cut off to encourage healthy new growth.

I had been having my poker straight hair permed since about age 11 but after the chemo my hair took on a new wave. I remember getting a perm before my wedding in 2000 but otherwise I have no memories of getting perms since the cancer. Thus, my hair seemed to evolve just as my mind and body has over the years. My name sign is a reminder of my perseverence and the changes I have gone through to become a better person.

Most people who are close to me and know me also know my name sign as they understand this important change I have endured in my life. Or they are new friends who have taken an interest in getting to know the late deafened person I now am. It has been nearly 4 years since I have been given a name sign. Harley, Katie, Jake, my sister, my brother, and sister-in-law have name signs also.

Do you know my name?

We Made it!








Results after the climb:

We reached the top thanks to you!

Me: 14 minutes 16 seconds

Michelle: 18 minutes

Floors: 69

Steps: 1,311

Over 500o participants; donations continue to be collected until the April 4th deadline. The goal is to raise a million dollars. So far we have exceeded the original projection of raising $750,000 for blood cancer research and support.

Our Fan Club





above middle: me, my friend Skip "Richard Sand" an honored Team in Training Leukemia patient, and my sister Michelle
top: Harley and DJ waiting at McCormick's while we complete our climb
bottom left: me, Skip, and our mentor Esther Grenier from the 2006 Seattle marathon

Morning of the Climb

top: little Jake in the background peering into the sliding glass doors of the kitchen, "You can do it mommy!"


left: picture of me in the lobby of the tower before the climb


I am wearing my Leukemia and Lymphoma Society Team In Training jersey from the Seattle Marathon 2006



Update letter I sent out the morning of the climb:

Today is our Big Day!

It is a rough one for me as my head is in pain from a withdrawl of the last course of steroids. I have been off of them for 13 days now and a slow progression of withdrawal symtoms accrued culminating over the weekend. At 3:30 am yesterday I was awaken out of my sleep with intense pressure in my left ear and mild pain. Then head pain around my eyes and sinuses for which I took acetametaphin. Later in the morning I had to start IB Profen and since last night I had to increase to 4 tablets at a time.

At 4 am this morning I awoke again to really intense pain. I took more IB Profen and tried to go back to sleep which I could not. Close to 6 am the pressure and mild pain in my ear (the side yet to have surgery) returned. I finally got back to sleep again after 6 am.

Unfortunately the pain around my eyes and sinus cavity of my head is still there making me a little nauseated. A little over another hour and I will dose myself up with 4 more IB profen which will hopefully carry me over to our 1:30 pm start time.

I am very determined to climb this tower. My pain is very minor compared to what cancer patients and families endure so any way that I can help goes a long way.

Thank you again for those who have donated and sent us well wishes! We greatly appreciate your support which has driven us! Especially today when not feeling my best your contribution and words mean a great deal to me! Your compassion and the thought of those who need us will help to get me to the top. Thank you!

Sincerely,

Rebecca Dufek


By the afternoon of the climb after taking 4 IB Profen I was feeling better and did not experience any weakness episodes that I was concerned about while climbing. I was a little sick on the ride over but the consumption of a balance bar satisfied me and eased the nausea that was creeping in.

When I got to the top I had minor double vision (needing to close one eye to read my watch) and an ache in my sinus cavity returned. Overall though, it was a fantastic climb and I was able to achieve my goal of reaching the top in under 15 minutes (14 minutes 16 seconds according to my watch).

DJ, Michelle's boyfriend, and my husband Harley accompanied us at the event as well as my friend Skip from the marathon, and Esther, my mentor from the marathon. Having them all attend psyched us up and Skip escorted us to the starting line where we all had our picture taken together. At the top, the victory was sweet with my loving sister by my side.

After taking in several minutes of the view and signing the dedication poster in the recovery room on the 40th floor, we picked up Skip and headed to McCormick's to meet Harley and DJ for an Irish lunch.

Wednesday, March 19, 2008

I Believe I Can Fly

The day before the climb I was not doing so hot and had a difficult day. It was my last chance to get out and walk the dogs on our "magic trail" - AKA the Snoqualmie Valley trail through the Stillwater part of Carnation - usually helps me to think, relax and put things into perspective.

I realized that in order to accomplish feat I prepared so hard for I had to put distractions out of my mind and get my "game mind" on. On the way back a favorite song I have not heard in years (because I am deaf) interestingly popped into my head. I can think of non other more fitting as this song has always churned up a deep sense of optimism and emotion within my being. The song is "I believe I Can Fly" by R Kelly. It is a very beautiful song that could even make you cry tears of happiness.

I Believe I Can Fly lyrics

I used to think that I could not go on
And life was nothing but an awful song
But now I know the meaning of true love
I'm leaning on the everlasting arms
If I can see it, then I can do it
If I just believe it, there's nothing to it

[1]I believe I can fly
I believe I can touch the sky
I think about it every night and day
Spread my wings and fly away
I believe I can soar
I see me running through that open door
I believe I can fly
I believe I can fly
I believe I can fly

See I was on the verge of breaking down
Sometimes silence can seem so loud
There are miracles in life I must achieve
But first I know it starts inside of me, oh
If I can see it, then I can do it
If I just believe it, there's nothing to it

[Repeat 1]
Hey, cuz I believe in me, oh
If I can see it, then I can be it
If I just believe it, there's nothing to it

[Repeat 1]
Hey, if I just spread my wings
I can fly
I can fly
I can fly, hey
If I just spread my wings
I can fly
Fly-eye-eye

Saturday, March 15, 2008

Friday, March 14, 2008

Minority - still waiting for a cure

This whole blog is about living life with NF2. I waited as a long as possible for a new medical development to formulate before being forced to make a treatment choice. Because the one tumor had grown rapidly over a short period of time in 2004 and had become large I could wait no further and had to make a treatment choice to preserve as much life function as able.

I was very afraid to get brain surgery and had been for a number of years (nearly 5 years since diagnosis). Therefore I chose the new and innovative radiosurgery where precise beams of radiation would pass through my brain to the tumor. At the time it appeared the better option which was non invasive and offered a high probability of nerve function restoration. The goal was tumor control and nerve function preservation.

Unfortunately I did not fall into the "lucky" category and suffered swelling of the tumor over 11 months which severely compressed my brainstem causing a slew of unanticipated side effects over several years. I expected to feel a little under the weather for a short while instead of endurimg months of having bouts of sickness worse than any chemotherapy I had. Further, I was told there was a 1 % chance of facial paralysis yet within 5 months I experienced a 50% loss of facial function on the treated side. From the date of treatment I continued to experience the loss of vestibular function reaching its apex when finally going off the steroids 9 months later. With the onset of facial paralysis, I lost saliva and tear production as well as the ability to fully close my eye which left me with dental, eating, and dry eye problems. My brainstem which had been compromised by the swelling tumor caused vision problems (nystagmus and oscillopsia) I could have never expected that are now irreversible.

Here are the links to two articles published about the outcomes of radiosurgery that my friend sent me this year.
http://www.ncbi.nlm.nih.gov/pubmed/17112219?dopt=AbstractPlus

http://www.ncbi.nlm.nih.gov/pubmed/10223445?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_Discovery_RA
It appears I have fallen into the 2 % catergory where everthing seems to go wrong. Unfortunately the "bandaide" that radiosurgery offered me was not adhesive enough and fell off.
Sigh............
I am not the only one though. There are others with NF2 that radiosurgery did not work for and needed surgery to resect the tumor just months after treatment.

So for now I wait and hope a cure is found before the tumor I just had surgery on regrows.

New Growth

Spring is really fantastic! It is my favorite season and a special time of year for me. On Good Friday (April 9th) of 1993 I had my very last chemotherapy treatment for Hodgkin's Lymphoma. So like the beautiful blossom we found last week on our hike, I too emerged from the harsh winter where cancer tried to beat me down.

I have always loved spring but it has come to be a very symbolic time of exciting change in my life for me. In the fall was the time for me to get surgery, to rest, and to recuperate. Now is the time for me to burst out of the shoot with the new being I have transformed into.

It is so thrilling! The sweet aroma of lovely blooms and color of the new life emerging everywhere around me tickles my senses giving me a warm fuzzy and that "high on life" feeling.

Friday I witnessed the 1st 2 sunny yellow blooming daffodils of the season along with white and pastel pink lily of the valley bushes (perius japicona), beds of purple, white, and striped crocuses, white, pink, and violet heather, and pink camellia flowers looking like perfect roses on a tree.

Since then it has only continued to flourish. Monday I saw shopping center flower beds overflowing with white daffodils bearing yellow centers, several trees in bloom with flowers that appeared like dainty snowflakes, more purple crocuses, and dark purplish pink buds beginning to open on the crab apple and cherry trees.

No wonder it is called the "season of love" as the senses are overpowered with delight!

Conquering the Section Line

Last week on Wednesday my sister and I hiked around the trails on Tiger Mountain again. It was our second time on this particular trail and because we parked at the trail head instead of walking from her house we were able to explore further up the trail.

We came to the following spot you see pictured above. On Valentine's Day we also reached this spot from a trail further east. Back then my balance was in a phase of being sort of off and it was getting late so we decided not to pursue it. Last week however I was feeling pretty good and pretty confident so I carefully climbed up this eroded and uneven portion of the trail by myself successfully! Even better, I able to ease my way down without falling over or needing to crawl.

My sister and I were so amazed that I was able to conquer this small rugged patch and continue up the narrow section line trail. The trail is rather long but we made it up as far as the remaining daylight would allow us.

How insatiably sweet it was to taste a sense of normalcy of the balance I once had if only for a fleeting moment! You never can fully realize what it is like unless you have suffered a stroke or some tragedy that has stolen your balance. The feeling is like losing a person close to you and being able to see them again for a brief few moments. You ache with longing and the pain cuts you deep that your time together is short but boy do you sure relish in the time that you do have.

Thursday, March 13, 2008

Training For The Climb


Here is the email update I sent out last friday regarding our training for the climb:


Well it has been an intense couple weeks of training as the climb grows closer. Only 1 week and 1 day now as the climb is next Sunday. We will be starting our ascent at 1:30 pm with my hope to complete the 69 floors within 15 minutes!

I have attached a picture of the tower taken February 22nd as seen in the Seattle skyline. It is the black building which is the tallest skyscraper hovering above the others.

Training -
For me it has been doing something daily.



brisk 1 hour walks with the dogs
once a week doing hill climbs 3 times in the neighborhood nearby
weight lifting 3 days a week
at least one 2 hour walk a week, sometimes more
running twice a week with one run ending uphill
using the stairmaster at the gym for 15 minutes completing 91 floors
practice standing and doing squats on the BOSU (both sides up device) without falling off
for balance, challenging myself with water aerobic moves once a week

As for my sister, we have been going on long walks in the area with Team Survivor NW which is a fitness program for women cancer survivors. She also often goes on hikes on the mountain trails where she lives.

A couple times over the past month my sister has visited her boyfriend's family in Portland, OR where they reside in a 11 story building. She has trained climbing the stairs in the building and last weekend completed it 7 times for a total of 77 floors!

I took 1 day completely off a couple weeks ago and felt incredibly guilty. I needed a day to rest as my energy was being sapped as I tapered off the steroids needed following surgery.

The weekend and early next week is the final push of training as we will need to recooperate for the climb at the end of the week.

Yesterday afternoon we spent 3 and a half hours snowshoeing in the Cascades with half of the journey going uphill. We were both pretty tired afterward and this morning. :o)

Thanks to everyone who has donated so far! It has been really thrilling to receive your support and has motivated us! We sincerely appreciate your contributions which are being used for a very worthy purpose and attach further meaning to our efforts!

For those who would still like to donate, we are able to receive donations until April 4th on our team fundraising page.


http://www.active.com/donate/2008bigclimb/HighOnLife

Thanks again and keep tuned for further updates.

Have a great weekend!

Rebecca


Update:


Wednesday - Hike up Tiger Mountain section line trail


Thursday - Snowshoeing in the Cascades (3.5 hours)


Friday evening - Daniel's Ranch hill training (3 times up and down hill)


Saturday - 1 hour brisk walk with dogs on Snoqualmie Valley Trail; 15 minutes-91 floors on stairmaster; 45 minute weight lifting (legs)


Sunday - Snowshoeing in the Cascades (3.5 hours)


Monday - run with hills in the rain: 30 minute run-15 minute walk-15 minute run


Tuesday - 40 minute run on flat terrain:Snoqualmie Valley Trail; 1 hour of water aerobics, 30 minutes of weight lifting (arms)


Wednesday - leisure 45 minute walk; 30 minute hard weight lifting (chest)


Thursday - 1 hour 5 minute brisk walk in Daniel's Ranch (2 times up and down hill)

Our friends in the Ranch

I am taking it easy now and just walking the dogs everyday leading up to the climb. Due to the darkness from the rain and the late hour of the day, I decided to walk in Daniel's Ranch nearby where I do my hill training.

We were graced with the presence of our gentle friends again and the welcome addition who joined the herd last week (4 very tame deer that like to hang out in the yards and don't seem to mind us passing by their space). They seem just as curious about us strange looking creatures as the dogs are of them. Thanks to Jake and Katie's keen sense of smell and alert peaked up ears I was made aware of their presence. Otherwise, I would have just continued about my business walking by.

Notice about photo link of Febuary 15th post

On Valentine's Day we went to the Desert Fire in Redmond. I posted a link to view more photos in the Desert Fire album but I discovered the link was not working until now. I had spelled "dinner" wrong and wrote "diiner" on the album in Picassa. I corrected it but forgot to post the updated link on my blog post. It is now updated and you can see the photos by clicking this link:

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

To view my all of my current photo albums click this link:

http://picasaweb.google.com/RebeccaDufek

Raynard is Back!

We discovered last spring that I also have Raynard's syndrome. Now while there are other women with NF2 that seem to have it, mine could also be attributed to genetics as my mother has Raynard's Syndrome too.

What is it? It is a condition where one loses blood circulation in the extremeties (fingers and toes) causing them to become white as if frost bitten. It is normally present in females and the onset generally occurs at age 35 which is the age I was when it first happened to me last year.

I had 3 episodes last spring and the first was quite shocking. I went into the gym and all of a sudden my finger looked dead! I had to warm it vigorously under hot water in the gym bathroom. Then another time it happened while I was grabbing a frozen meal out of the freezer at the grocery store where it took very long for my finger to warm up and return to normal. When it did it went thru a phase of tingling like pins and needles prodding it while it changed color from white to purple and the red.

This morning the trigger seemed to happen after I had been holding a cold bowl of cottage cheese and pineapple I had been eating. I had not noticed it until I finished and went to the sink to rinse the bowl. My finger felt kind of strange and when I looked down it was completely white and stiff. This episode fortunately was short as it quickly returned to normal after vigorously rubbing it under hot water. There was no tingling either.

Weird. I survived many cold days of winter being in the outdoors and it did not happen until today while I was in the warm house. After the surgery I thought maybe I had gotten lucky as I did not have any attacks in the fall of last year or winter this year.

Hopefully it is just what it is and not some strange side effect I am having now from the other tumor. I should have paid attention last year as to which hand it was happening on. This morning it was my left middle finger. On the left side is located the tumor that has not been operated on yet.

Addition:
I forgot to mention that back in February on a visit to the dog park I kept taking my gloves off in order to shoot pictures. Although it was very warm (40s-50s) compared to frigid midwest winters of below zero, my hands still became icy and stiff. When I returned to the truck my right hand was so weak from the cold that no matter how hard I tried, I was unable to have enough strength to turn the key in the ignition far enough to start the vehicle. After repeated unsuccessful tries (4), I had to use both hands to turn the key in order to start the truck.

I was a little worried it was not going to work. What would I do? How strange would it be for me to ask a passing stranger to turn the key in the ignition for me.

More Relay Frustration - Claude, Charlie, and a Baked Lime

I know the relay system is a great wonder for those who were cut off from phone communication for many years but I don't know if I will ever get used to it. Making calls as a late deafened person is totally frustrating as it is no longer convenient.

Yesterday I called my sister and got the answering machine which always hangs up unless I have told the operator I would like to leave a message BEFORE making the call. I know what the answering machine says as I know who they are. So I was sort of surprised when the operator typed "This is DJ, Michelle, and CLAUDE." LOL Who is the heck is this Claude?

Of course there is no Claude and I know that but if I was somebody unaware I would think a Claude really exists. Their Boston Terrier's name is "Spud" so their message on the machine is "You have reached DJ, Michelle, and SPUD." Somehow the operator interpreted the sound of the name Spud as the name Claude. Do Spud and Claude even rhyme or sound alike to you?

Then later I called Harley and the operator types to me "This is Charlie." LOL I get that interpretation quite often but at least those two names totally sound nearly the same. Often operators will type "BJ" for "DJ". I have not told my sister that yet.

So then we have today. I try to call my sister and it literally takes dialing, waiting, and hanging up 6 times before getting a connection! I thought there was something wrong with the phone so I checked all the wires and even pulled out my computer to make sure the phone was plugged in which it was. I tried it again and finally got through only to have the operator get the number wrong! So we try it again! Then within the process of the conversation the operator types to me that my sister inquired if I got an email from the "Baked Lime". LOL Do people even bake limes? Fortunately she kept talking and I was able to figure out from the rest of the conversation what she was referring about - our "Big Climb" and not a dang "baked lime".

I told her about it and then she unnecessarily apologized because she thought it would be easier for the person to type "Big Climb" instead saying the "Leukemia and Lymphoma Society" to which the operator disastrously massacred typing the "Lukemia and Lyphious Society". (rolling eyes and shaking head) There were more errors left for me to decipher that I cannot even remember now.

This happens a lot! Sometimes there will even be abbreviations used which I have to quickly try to guess as there is only a tiny screen where I can view 2 short lines of text at a time. If I cannot problem solve what was meant in time the conversation passes me by and the text disappears and is replaced with new words.

Now there is a method of reporting complaints and is encouraged. However, like the disappearing text, the operator's ID number disappears also once the call has been made unless you have forked out $180 for a printer that will print all your conversations on a skinny roll of receipt paper. If you don't have a printer, you would have to remember to quickly jot down each operator number EVERYTIME you made a call so you have their ID number in case they screw up.

I understand that listening to and typing conversations would not be an easy job and that errors here and there are inevitable. Further, it may be difficult to understand some answering machines or people's voices if static is on the line. This communication is better than no method of making a call at all. Yet, going from hearing where making calls is a simple process one takes for granted to the complication of depending on a third party for communication is just plain frustrating and not an easy change to have to accept.

Tuesday, March 11, 2008

Lost

As part of my training yesterday is my run day. I switched the day I run and the day I go to water aerobics because my favorite instructor teaches on Tuesday evening.

Anyhow, I was tired from snowshoeing the afternoon prior and getting up really early so I did not hit the trail until almost 6 pm (5:57 pm). Wouldn't you know it started to rain before I left?

I decided to go exploring and hit a new trail I have seen while venturing to Issaquah but had never been on. I had to go there anyway to drop off my sister's camera left in Harley's hydropack.

I continued down Duthie Hill Road from Redmond Fall City road until I saw the start of the trail. I parked on the side of the road that intersects Duthie Hill road from the right (west). When I started on the trail I discovered immediately that this nice paved path also traveled west as well as south running parallel to Duthie Hill Road (which becomes Issaquah Fall City Road).

Since this was a new discovery, I could not help but take the west route to quench my curiosity to find where it lead. Thus, I ran on the path to the right and passed suburbs hidden in the trees and a scho0l until the path ventured south along a power line crossing where the open view revealed the Issaquah Alps (Cascade foothills and Squak Mountain where my sister lives).

I turned left taking the path heading south towards Issaquah. It came upon a park where boys were dressed in deep emeral green jerseys and playing lacrosse. Futher south across the road from the park the powerline path continued so I followed it where it led up and down hills and curvy corners. What fun! "Just a little further", I thought and then I would turn back. I wanted to see where it led.

While running on this path I thought it would be a great idea to run a connecting route so that I did not have to retrace my tracks. Thus I kept going until I hit a main road that appeared in the grey drizzly overcast weather to travel east and west.

Remembering how I started running west from the road traveling north and south and then I had made a left turn to travel south towards Issaquah where I could see the faint silloette of the mountains in the mist, my next logical turn would be left to head back east. Right? According to my inner navigational compass driven by instinct that would make sense. My plan was to eventually meet back up with Duthie Hill road south of my starting point and head back north to find my truck.

Hehehe Easier said than done. After a half hour of running and what seemed a long time I had been running since I last turned, I came across a familiar scene that was like a deja vu. Again the powerline crossed the sidewalk I was now on and a park that looked eerily similiar to the one where the boys were playing was now on my right. Although it is possible and does happen in areas like this, everything looked too much alike to be a completely different place. Were there two powerlines crossing the road? I became very confused.

Then I saw the mountains again on the powerline crossing on my left but not where it continued on my right where I saw the park which looked so similiar. What the heck? If I was heading what I thought was east, how did the south suddenly appear on my left? I stopped as I did not want to end up running totally the wrong way and end up in darkness trying to make it back to the truck. It is not like I could easily hitch a ride with wet dogs accompanying me.

I wandered over to a sign kiosk which I thought would have a map. No such luck (only information about wildlife and the neighborhood). With it being an overcast day I could not determine which way was which. I only had these mountains which appeared telling me that was south but according to my instinct and the path I took I did not see how that was possible. I looked around not knowing what to do. Then I saw another runner heading my way that I could stop and ask.

Remember that I am completely deaf and because it is running day I am wearing tights with no pockets. Thus, I have no paper and pen on me. LOL That makes for interesting and challenging communication on getting directions. Basically it becomes a guessing game where I have to determine the questions which will lead me to the right answer I seek. It appeared however that I might have encountered a person who just knew the area but not road names as when I inquired repeatedly if the road I was traveling on (Khlanie) met up with Duthie Hill, I did not get a definite shaking of the head yes and instead a look of "Um. I am not sure." So then I inquired which direction is Issaquah again with a questionable response. Eventually I just told the person maybe I should head back the way I came (which would be another half hour run).

When we parted I chose to run back on the powerline path along the park which looked so familiar AND had a school next to it like the one when I originally turned to head south. FORTUNATELY, it was the same path I was on a long time ago. I still cannot figure out how I got there. It is like I was in some weird sort of twilight zone warp. I will have to look at a map to figure out what happened. Aparrently I went in a circle. I have no idea how as I don't know powerlines to travel in circles.

In any case, I made it back to the truck finally in exactly an hour from when I left. Good thing for daylight savings or I would have been stumbling my way back to the truck which we arrived at just before 7 pm. I was right that the road I was traveling on DID meet back up with Duthie Hill road and the path continued back north. How in the world I ended back in the same place and had to trace my steps back remains a mystery. Chuckle I guess the moral is that one should not go "exploring" in a new place on a rainy and cloudy day. ;+)

Monday, March 10, 2008

High On Life - the "Climb"


The following is a wonderful article my sister wrote about me regarding our "climb" of the Columbia Tower this coming Sunday March 16th.
The Columbia Tower is the black tower hovering over the other buildings in Seattle in this photo taken February 22nd.
Tower Power
Escanaba native climbs Seattle’s tallest skyscraper for cancer research
Michelle DeGrand
Every morning, the ritual starts from the top. Eye drops first, then a moment to collect herself before getting out of bed. When she does, it’s slow going, reaching out for bookcases, furniture, and door frames to stay upright on the long trek to the bathroom. Constantly growing brain tumors have plucked many things Rebecca Dufek once took for granted: her tears, her hearing, and her balance, just to name a few. But this story isn’t about what was taken. It’s about what Rebecca is giving to and getting back from life. Even though every day for her brings a new set of obstacles, she’s taking on challenges most people never dream of. In the process, she’s changing countless lives one step at a time.
An avid diver and hiker, Rebecca and her then-fiancĂ© packed up their things in a small trailer and headed west in 1996. From Escanaba, MI to Seattle, WA, they moved to a land of mountains and water to quench Rebecca’s thirst for the outdoors, but her dreams were about to be scaled back.“I had wanted to be a mountain climber but I waited too long and lost my balance function before ever having a chance to do those things,” Rebecca said.
Rebecca lives with Neurofibromatosis Type II, or NF2, a disease where brain tumors attach themselves to vital parts of the brain and are difficult or impossible to remove. They continue growing and causing more problems as they crowd out things like the auditory nerves, causing deafness, facial nerves, causing paralysis, and in Rebecca’s case pinching her brainstem, causing a myriad of problems including a loss of equilibrium that makes common daily tasks like descending stairs daunting. Multiple brain surgeries are inevitable. She underwent her first open brain operation in September. “It took 8 years to accept that [I couldn’t get out of having brain surgery] and prepare for it while the tumors grew,” she said.
The way she prepared was by forcing her body to stay active and in shape, even as the tumors were making those activities harder and harder.“All surgeons say that it is most ideal to go in [physically] strong to better your chances of getting through the surgery and having a successful recovery,” Rebecca said, “So that is how I get the best quality of life available to me; I train to be a survivor.”
Now, only 5 months after that surgery, she’s on a mission to climb Seattle’s highest skyscraper. The Columbia Tower stands at 69 floors (that’s 1,311 steps) and Rebecca’s two-person team will climb the building on March 16th for the Leukemia and Lymphoma Society. The event is called the Big Climb, and attracts thousands who climb the skyscraper each spring, raising money to fight blood cancers.
For Rebecca, it’s also a personal journey to help others like her; other cancer survivors, that is. She has also been in remission from Hodgkin’s Lymphoma for 15 years this May. She is among only a handful of people in the world to survive cancer and then be diagnosed with NF2. But none of that has stopped her from her quest to make a difference for others however she can. Rebecca has already done numerous running events to benefit NF2 research, the American Cancer Society’s Relay for Life, and she walked the 2006 Seattle Marathon with the group Team in Training, raising almost $3,000 for blood cancers. She also climbed the Columbia Tower for the LLS last year, not long after her grandfather, Clarence DeGrand, passed away from a blood cancer called Myeloma.
“When I reached 49 floors and there was a sign for 20 floors left to go I started hooting and hollering,” she said, remembering the experience, “When I reached the top and the sunlight poured in from the picture windows in the tower it was a heavenly feeling. I felt closer to Grandpa and was overwhelmed with happiness.”
This year’s climb is also dedicated to her grandfather, and in part because of his spirit, Rebecca plans to continue her athletic and charitable ways as long as she can. However, she knows better than most how quickly the abilities you take for granted can disappear.“With NF2 you don't know how long it is going to last, so I like to grab opportunities when they come and not let them slip by,” she said, “I am addicted to the highs of life. In all the things I have been through, cancer and brain tumors, it makes me feel alive and that I am living [life] to the fullest by doing such activities [as climbing and hiking].”“At the same time I am also doing them for an important purpose,” she added, wondering aloud why anyone with the ability to help wouldn’t put forth an effort, “We all have a personal responsibility to contribute to the common good and to society… It is basic humanity.”
The morning ritual is now over, but the day ahead brings many more. Today is training day. Rebecca tells me that living with NF2 makes every day a training day of sorts, but knowing she’s training for others makes her more eager to get up and do it all over again the next day. She finally makes her way carefully down the stairs. That’s when our eyes first meet on this chilly, Seattle morning. Since she is deaf, I’ve been standing outside peering into her living room window, waiting to catch her attention. She greets me with a wave and an enthusiastic grin. It’s time for us, two sisters, to train for the Big Climb. So far, we are the only members of a team Rebecca aptly named “High on Life.” Her experiences dealing with everything life has to offer, good and bad, have given her an amazing appreciation for the complex journey that it is. That spirit has rubbed off on me, too.
Although our team is small, we both know we are a part of a much larger team of people making the effort to save lives.“Thankfully there are others who feel the same way that I do and that is why I am here,” she says of those who came before her and allowed research into Hodgkin’s Disease to save her life, and keep a sister in mine.“Now it is my turn to pick up the torch and carry it for someone else,” Rebecca added matter-of-factly.I’m proud to be Rebecca’s sister, and even more proud to know that our efforts could allow others to survive and understand that high on life feeling.
Who knows, our little team could spur someone to make their own contribution. That may not mean climbing mountains, or even skyscrapers, but just making a difference where and how you can. My sister Rebecca holds a wonderful quote by writer Sydney Smith close to her heart:"It is the greatest of all mistakes to do nothing because you can do only a little. Do what you can." In the end, it could mean everything. It has for my family.If you’d like to donate to the 2008 Big Climb, the High on Life team page can be found at www.active.com/donate/2008bigclimb/HighOnLife. Better yet, if you or someone you know lives in the Seattle area, feel free to join our team or create your own!

5 months 1 week

5 months and 1 week since my brain surgery and I am doing great! So far it is the best I have even done coming off steroids! It has now been a week that I have been off of them. I had a blood test on Friday February 29th which reveals all my blood chemistry is back to normal. I have managed to resolve the anemia squashing out any deep seated fears of the blood cancer returning. Further, with the long and slow steroid taper my body has been able to adjust so far and is not succumbing to adrenal gland insufficiency! What a dang relief! Now hopefully I can stay off the steroids until the next surgery.

During the taper I did experience some days of nausea where continual napping off and on provided relief. Interestingly on those days I was able to force myself outside in the late afternoon to get some fresh air and go for a run. Somehow running out in the crisp outdoors made me feel better and the nausea was gone for the evening.

Fatigue is faring much better than any of the tapers between now and 2004. I have gotten a little tired napping for a couple hours after activities but my energy seems normal while I am doing the activity and I am not experiencing body/muscle aches as before.

I don't recall having a headache over the past week which is FANTASTIC! I did expect to have a few to varying degrees as I have had with every other single taper. The marvelousness (if that is a word, if not I am creating it) is great but making me slightly nervous that it could quickly turn with the climb less than a week away.

For now, I am enjoying the "high on life" feeling of things going well. I will continue to ride it out as long as it lasts.

Note: The same day I was slightly down when thinking of the privileges taken from hearing loss, I realized later that evening while at the gym that it has been almost 5 months since my surgery. Just the fact that I have come this far so soon after lying in a hosptial bed after having my head cut open gave me a fuzzy "high". While doing my workout I could not help but smile at myself several times by thinking of how proud I am of my accomplishment. In ICU after my surgery, I could not even fathom being at this point where I am right now.

Wednesday, March 05, 2008

Collateral Damage


Two weeks ago I worked on a painting project in the house. This will only be the second area I have painted since we moved here. In our first house I painted every room but that was when I had balance and found painting to be a relaxing home remodel task.
We moved here in spring 20o3 and with finishing graduate school in 2004 there was no time to work on the house. As soon as I finished we took on the task of tearing down our old deck and building a new one. Shortly after the construction started I became ill after cyberknife treatment and was unable to contribute. In fact, when the deck was complete I thought I could do my part by picking up the refuse wood. That is when the hard reality of losing my vestibular function hit me as the turning from side to side motion to pick up the wood caused me to lose orientation slamming my head into the terraced rockery directly adjacent (beleive it or not I was even in a sitting position!).
Many things became difficult and I could no longer do (such as yard work or anything requiring balance of some degree). In 2006 I began to experience improvements in my balance and during that summer I took on the first painting project of one of the smallest rooms in the house (our downstairs bathroom). What a treat that was! NOT! It was nothing like I remember it and very frustrating.
Bruises began appearing all over my body as I would lose balance while painting and fall painfully on our tile floor. White primer found its way in my hair, face, arms, hands, and totally coated the bottom of my feet as I forgot to wear shoes and socks.
After a long hiatus and being too worn out to paint more, I worked up the courage to try it again. We were improving an area that we discovered desperately needed painting before we went further with installing nice shelves.
This time the project went more smoothly as I have learned to adapt to the balance challenges with this new body. AND I have made what I feel are substantial improvements thanks to my training and practice on the BOSU.
I did not take falls. Yet I still became bruised. The easily bruising of my legs may have been contributed by the steroids I had been taking. What you see above is the collateral damage I suffered during the preparation for painting of taping off all the trim. It looks nasty like somebody kicked me but this is caused by no impact what so ever. The bruising is simply the result of leaning against the step ladder while trying to maintain balance during the taping process.
At the time it did hurt but I thought my skin was just overly sensitive. For whatever reason, during that week even a caress felt like a scratch to certain areas of my skin. I was pretty surprised the next day to see this series of bruises running up and down my leg. This is a good photo where it actually looks better as I took it 2 or 3 days later.
Even with subjecting myself to this collateral damage, I did enjoy this project and am very pleased with the results! I am excited to take on more! When we finish getting the shelves built I will include a picture. Unfortunately I forgot to take a before photo as I was so eager to see what my effort was going to spin out. :o)