Tuesday, June 28, 2011

BELIEVE! 13.1 miles in 2 hours 15 minutes 51 seconds

Our spectator and supportive husbands Harley and Pedro and Merrie and I at their home Saturday evening where we celebrated our accomplishments with a bbq :)

Merrie and I wearing our NF Endurance jerseys and our "Rock and Roll Bling" finishers medals - Merrie finished the full marathon in 4 hours 5 minutes; her first in MANY years

Writing I wore on my legs during the event:
"40 days AFTER brain surgery"
"Still Strong"
"Never Give Up" - our NF2 motto
"4 Shantelle" - my run dedicated to my friend Shantelle struggling with NF2 currently

Miracles never cease to exist! By the grace of God with only 1 week of real training which means running, and exactly 40 days following brain surgery, I ran an entire half marathon on Saturday in the Seattle Rock and Roll event. Not only did I run 13.1 miles but I did it only 10 minutes and 10 seconds slower than my time for the same course last year when I had at least 10 weeks of prior training. It is truely a miracle no doubt!

When I say to you that I was really unprepared for this event, I am not kidding!!! In January I was thinking about doing this event but slacked off on starting the training. If you follow the 10 week marathon rookie site, I had leeway to start training the second to last week of April at the LATEST. However, I like to throw in 2-4 extra weeks in the training to account for any possible downtime I might have to take off to heal injuries. That would have brought the start of my training to exactly right after the Big Climb skyscraper race I do every year which I now lead a big team in. The event was on March 20th so earlier in the year I was focusing on team recruitment and a different type of training for the racing up the tower which is more of a sprint type of stamina rather than endurance.

During the first week of March I was hit with the bomb that my tumor/s operated on in 2009 grew back in less than a year and a half. Utterly shocked and in disbelief, I tried to put it out of my head to focus on the upcoming big climb to which our team had outstanding success both in fundraising for the LLS and athletic acheievement. After the event was over, I had to put off training and try to figure out what the heck I was going to do.

In the past, it has taken me YEARS to decide on a surgery. I am like the student in class wanting to be the very last person to walk up and give my speech. I want every last second possible to prepare. I tend to be the same way in my approach to surgeries. Yet, I was getting the impression across the board that it would not be a good idea to wait too long this time. Not wanting to wait until AFTER the marathon and miss my hike season in recovery, I made a first ever ballsy decision to get the surgery in May. That meant the marathon would definitely be out of the question. I made this decision sometime in April but to tell you the truth what really pushed me is that I did not want to miss out on my hiking. LOL Otherwise I would have tried to put it off for longer. ;-) I was a little bit disappointed that I would not be running to represent the NF Endurance charity team but I also had the option to run for the team in another state in the fall. Hiking however is a small window and with NF2, you never know how long the luxury of taking in this pasttime joy is going to last.

So I ruled the marahon out and did not train. I just maintained running 2-3 times a week for 3 to 4 miles at a time to keep in shape for the upcoming surgery and also to hopefully bounce back fast so I could get back to hiking as soon as possible after the surgry.

You must always thnk positive before a surgery but in truth it is pretty much out of your hands. One can get in the best physical shape and get the mind and spirit in the right place but at a certain point it is totally out of our hands. Not being 100% certain of the outcome, I did not register and the event was sold out after I made it through the surgery.

However, I did really want to make it back home by the marathon so that I could be here for my trainer who was running the full in honor of me and to support the team. So although my leg really hurt still from the surgery, I walked everyday to move my recovery along. A fellow patient once gave me the advice that as soon as you get out of that hospital bed you get moving! You walk and then you walk some more.

By the time I came home, I contemplated that first week if I could walk the half marathon (I did walk the Seattle November half marathon 39 days after my 2nd surgery so it seemed only natural that I should find a way to do this one). By the end of the week I decided to take a little run to see how it felt. Surprisingly, I ran 2 trail miles in 20 minutes and walked the 2 miles back! Excitedly, I shared my desire to walk/run the half marathon while hiking with my trainer the following day. Sadly though, I did not think I would be able to get registered at such a late date. But alas, as always Merrie has all the answers and had a solution for me. Thank you Pedro for passing off your spot to me! :)

So I decided on June 11th that I was going to walk the half marathon and maybe run possibly 4-6 miles of it. Ok....I fantasized about being able to run maybe even 8 miles. At the time, I thought I would have 3 weeks of training but was not yet aware of how soon the date was arriving. Monday I threw myself into training by going for a 6.5 mile run. Realizing now that I grossly miscaculated and only had 1 real week left to train (the last week is a rest week), I concluded I was going to have to do my longest run the following day!!!! My leg was hurting and I was not even sure I would be able to run 6 again! Amazingly I pushed out 8 in 1 hour 20 minutes on a paved trail! Woohoo! Friday although painful, I managed to run another 4.5 on the trails in the watershed preserve. After that running was OVER until event day. I tried running about 20 feet Sunday afternoon and winced in pain from the tightened inflamed tendon behind my knee of the leg that has bothered me since surgery.

Seriously, I started having reservations from the day throughout the rest of the week if I would even be able to finish WALKING the event. The wee hours of Thursday night/Friday morning did not boost my confidence either as the tendon behind the knee started spasming in pain jolting me from my sleep. Friday evening at the team pasta dinner, the captain announced to all in attendance that I was planning to RUN the entire half marathon! Embarassingly I thought. "Oh No! I don't even know if I will be able to walk the whole thing to finish!". Yet after she said that, I think I made it up in my mind that I was going to do the best I could and if that meant I could run the whole thing, then so be it! Also, I wanted to do my very best and finish to show my friends Shantelle and Paul that they can survive and get better if they really put their minds to it like I did for this race.

Thursday, June 23, 2011

Women of Character

"Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, vision cleared, ambition inspired and success achieved." - Helen Keller

I am pictured here with my friend Shantelle who came down to my surgery in Portland and I posted a photo of her with her son back in May. Shantelle also has NF2. Right now she is experiencing a turbulent time with her medical situation, way more concerning than my dang face.

Over the past year one of her tumors grew to an immense size causing her the side effect of swallowing problems. As a result, she lost 40 lbs in a short period of time sapping her strength for surgery. Therefore, her doctor had her get a feeding tube put in to help her gain the needed weight. Unfortunately the darn thing became infected so she had to go to the emergency room to have a "pic" line put in her arm that will deliver strong antibiotics straight to her bloodsteam. She also had to spend a couple nights at Swedish Hospital in Seattle until the medical team had her on her way to healing.

The picture was taken late yesterday afternoon as she was being happily discharged. It gets pretty boring lying in a hospital bed for such a long time.

Shantelle has a long way to go so please keep her and her 4 children who need her in your prayers for healing, strength, courage, and a promising treatment.

P.S. - I am doing quite well and my physical fitness recovery has been nothing short of miraculous. As a matter of fact, I am going to do the Seattle rock and roll half marathon this Saturday. I will run as far as I can (Hopefully half of it - 6 or 7 miles) and then walk the remainder. My leg is still sore and the pain shifts between the inner thigh, outer quad,the tendon behind the knee attaching my calf to my hamstring on the outer part of the leg, my IT band extending into the glute, and the entire skin of the leg to the bottom of my foot which increases with sensitivity with long durations of running or hiking.

Last week I ran a total of 19 miles and hiked 2100 feet which would rightfully make me sore if I have not been doing that for a month! So this week I am resting. I went for a fast 2 hour walk monday night but all other days it has been under an hour with 1 day off. Hopefully that will do the trick to get me ready to get through the event with tolerable pain.

Sunday, June 19, 2011

Happy Father's Day!

"You may be ill physically, but as long as your mental state is strong, it most certainly will exert a positive influence on your body. There may be no better remedy than hope."

- John Walsh, father of Patrick Walsh who lost his battle to an NF related cancer

Connections of the hearts
Next week it will be one year that our son Patrick left this earth and went to heaven. He fought a tough battle with NF related cancer right to the last day. I will always remember the day before he died in a very special way. The day before he died was... Father’s Day 2010, he fought the pain and got out of his bed to go and take some pictures of us and our next door neighbor JR. Patrick had helped his friend JR rebuild a classic car until he got sick and couldn’t do it anymore. JR finished the car and wanted Patrick to see it completed. With the help of Ronnie another close and good friend of Patrick we managed to get Patrick next door for the pictures. Patrick look at his friend JR as the picture was being taken and said, “You know I’m not going to be around much longer.” Most of us that heard that were trying to hold back tears. To me this was a very special Father’s Day gift. I learned how to be strong and keep going even when faced with challenges. We must challenge the circumstances in our life and steadily keep moving forward. That day I awoke a sense in me that I put aside for a long time, that being attitude. Now I try to keep it positive, that way it not only elevates my own aurora but also that of those who are in my life and have contact with me. As much pain as Patrick was in that day, he tried to be positive and wore that best smile that he could. His apparent happiness to see the car and his family and friends gathered around quickly became the happiness of all there. Never avoid what you must face in life, just reach out from where you stand and there will be a hand there to help you to the next step. That is what happened that day. Patrick reached out for help to get to the car and at that time even though in denial I think he reached out and prepared us for the next step, which was his leaving us here on earth the next day. I found this past year a new connection with my family, my wife Galdys and Daughter Jennifer, my Mom and Dad and my brother and his family, also my friends and coworkers and Facebook friends who have been there for us through these trying times. It’s a connection that I can’t express in words I just know it’s there and it comes from the heart. It keeps me strong and doesn’t allow my weak side to dominate, if I let it do so it will surely mean defeat. As Patrick said, “Keep up the fight.” and “Enjoy life that’s all that matters.” I know he is wherever I am, and I thank you all for being where you are.
By: John Walsh

John's story is a beautiful tribute to the perseverence of his son, the loving relationship of a father, and an example of how to make the most of living by deciding to.
I often cross this path too and am forced to make that choice of deciding how I am going to respond to something. Situations challenge the way I perceive the circumstance taunting me to give in to misery but I fight back with joy.

I have to say that my first week out of the hospital was that kind of week, a broken face trying to snuff out my spirit and continual pain in the muscle and skin of my entire leg.

Yet I was very excited for the opportunity to be at my parent's home in the middle of the week to share my dad's birthday with him to help him celebrate. It would not have happened otherwise. It was so much fun to be there for this moment!

For those who do not know, my dad as well as my grandpa, his dad, have been an source of strength for me encouraging me to press on.

When I was a kid in grade school, I used to race cross country skiing in the Upper Penninsula State Winter Games. I was so excited to have the honor to represent my school at the games the first time when I was in 5th grade.

Race day was pretty hectic and nerve racking with tons of spectator parents, families, friends, and a crowd of athletes. For this first race, they had everyone start in a pack by the shooting of a gun. At the startline another skier fell onto my skiies making me immovable as the pack nearly drifted out of sight. I was wildly frustrated and disappointed. I imagine back then I felt like poking the person to a pulp with my ski pole to get them off. Yet, that is a trait my father taught me not to do. So I patiently but anxiously awaited for the skier to get to a stand freeing me.

By the time we became untangled, the pack was long gone and my heart was in tears. How on earth was I supposed to have a chance at coming in with one of the fastest times let alone catching up to the pack? Desperately I tried going as fast as my out of shape body would take me to try to rejoin the other racers.

Although I tried my hardest, I just could not keep up and my lungs burned with fire as my body as well as my spirit lost strength. Finally it was just too much and I realized that I could not have the thrill of victory that I wanted. So my young mind chose to quit as tears rolled down my cheeks in defeat.

My dad was there encouraging me to press on but my spirit was too embarassed and broken. Quitting was a horrible feeling. No matter what place I was in, my dad was there to support me and at the time I did not realize that just finishing was what was important.

Although discouraging, it was a very good life lesson which compelled me to never quit again and I think that is probably why I am still alive and keep ticking.

In addition to the strength of character, my dad and grandpa shared with me their passion and sense of appreciation for the natural wonders of the world. I cannot tell you how much this has brought joy to my life and continues to getting me through multiple life trials.

Thank you Dad! I love you! :)

Saturday, June 18, 2011

Saturday, June 11, 2011

Intermission - Deception Pass, WA

Our pre-surgery adventure to Deception Pass connecting the mainland of WA state to the northern tip of Whidbey Island after our tulip field tour on May 1st

Friday, June 10, 2011

The One Eyed Leopard

Thursday morning before the eye surgery

Wednesday night we had to tape my eye shut at bedtime because the eyelid would not fully close allowing it to partially drift open when unconscious. As a result, my eye would be sore in the morning and also in the daytime even with gel drops inserted in my eye. Therefore, when the ENT doctor came to visit me on Wednesday, he mentioned that he was considering the eyelid weight implant for me which MAY be permanant. We do not know yet if my facial paralysis will heal and to what degree.

Last friday was my followup appointment with Dr. Stephen of the OHSU facial plastics clinic to give a look at how the eyelid healing is progressing 2 weeks post surgery. It looked good and I have taken great care with it. I think for a week I taped an eye patch over my eye at bed so that I would not unconsciously rub my eye either scratching the cornea with the weight or dislodging it all together. But I got tired of the tape sticking to my cheek and forehead the next day and reverted back to wearing an eye mask at night which worked well. (just the eyemask with gel drops inserted in my eyes....NOT the tape)

The appointment was very enlightening. Dr. Stephen is a GREAT doctor!!!! He said that if the facial nerve DOES come back and I find that the weight is unnecessary, then they will go ahead and remove it as over time it can drag down my eyelid.

I am never thrilled about another surgery, but that one I WILL TAKE WITH PLEASURE! If a removal became necessary, than that would probably mean my face would come back too!

Thursday, June 09, 2011

Focus on the GOOD

"Good things come to those who wait."

I am using a great deal of symbolism here in my latest posts if you have not already caught on. I am a very DEEP person and I think that could be a part of what has gotten me through the roller coaster of life traumas I have been riding.

I opened my email yesterday to find an advertisement to a charity shopping newsletter I get with this very fitting quote I need at the moment.

The pictures are from our quest to find peace before the surgery by visiting the tulip fields up north on May 1st (the very tailend of the festival but was actually timing of spectacular bloom because it was cold longer this year). We also journeyed with the dogs to Deception Pass where a very tall bridge connects the main land mass to Whidbey island on the far northern point over a very narrow straight between the main waterway. For me I really needed the peaceful beauty of the tulips and Harley the water (which I like too and is a bonus!).

Yesterday my quote book read:

"As God's workmanship, we deserve to be treated, and to treat ourselves, with affection and affirmation, regardless of our appearance or performance."

- Mary Ann Mayo

For Your Eyes Only

Top photo: Dr. Stephen of the Facial Plastic clinic numbing my eyelid
Middle photos: On the left Dr. Furr, with the cool hat with lobsters on it that I liked, and Dr. Stephen performing surgery on my eyelid while a resident/student observes; it is a teaching hospital
What Dr. Stephen is holding with a pair of tweezers type tool is the literal gold weight that was implanted in my eyelid to help it to close.

Bottom photo: me after the procedure with OX or maybe it was before because I look pretty good; so yeah that must be before the procedure
By the way, OX, that green alien looking thing is the comforting and cuddly pillow doll Merrie gave me. That is why a photo of me with it is posted on my last blog post.

Monday, June 06, 2011

What is Beauty?

Rebecca with friend and trainer Merrie Vieco, Rebecca & Harley's dogs Katie & Jake who stayed with her in Oregon during recovery, and Hunter, Rebecca's parent's dog ready to take her first walk outside and on hills 3 days after a major brain surgery
This photo was taken on the afternoon of Thursday, May 19th when she was discharged from the hospital following a smaller surgery by the OHSU facial plastics team to insert a gold weight in her upper left eyelid on the side paralyzed from the surgery. The weight helps Rebecca to close her eyelid and blink at a delayed interval in order to retain moisture. Keeping the eye from drying out is so that the cornea does not become scarred which would cause one to lose vision.

Photos by Michelle De Grand

Quote for May 19th in the daily affirmation book "For a Woman's Heart, Thoughts by Women for Women" given to me by my mother-in-law

The best and most beautiful things in the world cannot be seen or even touched. They must be felt with the heart.

- Helen Keller
OX, my Ugly Doll - his description

What kind of name is OX? No, not like the animal OX, as in HUG and KISS! How can he hug you with such short arms? OX uses his ears! He's not a very good listener, but he puts his ears to good use in many other ways! OX is great at magic, and his best trick is turning your stuff into his stuff. His best buddy Wedgehead calls that stealing, but OX just wants to borrow things from you for a few hundred years. He promises to put everything back when he's done. What he wants to steal most are kisses, whether they're in the chocolate variety or just plain, and he promises to be your friend if you would lend him a hand, or an ear...or like Two Dollars!
UGLYDOLL OX IS APPROXIMATELY 12" TALL FOR ALL AGES* Winner 2006 Toy Of The Year Award by Toy Industry Association * Oppenheim Best Toy Award


Click the link to visit the official Uglydoll site and read about the story from the home page that started it all. Ugly Doll means "special and unique".

Sunday, June 05, 2011

Special Note About My Posts

Top: Mt. Hood in Oregon

Bottom: St. Helens in Washington state, both as seen from OHSU hospital in Portland, Oregon

Dear readers,

Thanks for following along! I wanted to let you know that there is a little gap in my posting last week with many posts dated from Wednesday. I had followup appointments in Portland Thursday and Friday and knew that those were going to be all day adventures leaving me with no time or too tapped out to blog when I came home. Saturday I was also gone all day with my dad on a tourist hiking exploration of the waterfalls outside Portland and then attended the Portland Starlight parade last night with my parents. I was so tired when we came home that I fell asleep in the bathtub for an hour until mom came in to wake me up!

Planning for my post-surgery escapades, I started many posts and saved as drafts which I could just publish later on the days I had activities I was busy with. However, without realizing it, when I did publish the posts, the date revcrted back to Wednesday as if they were old posts yet they were new.
So please scroll down to all the posts dated Wednesday June 1st to make sure you did not miss anything. All posts have a photo with them and I thanked some special people who made this surgery and the outcome a little happier. In case you have not noticed from the pictures, I have suffered facial paralysis on the good side of my face which has been emotionally hard to accept and I will talk more about it in detail on a future post. As such, I have GREATLY appreciated the beauty, cheer, and cards people have added to my life along with the PRAYERS WHICH I AM STILL IN NEED OF.

Enjoy reading! I will continue to post regularly with more photos and stories of my recovery experience and pre-surgery preparation when I return home this week.

With gratitude,

Thank You My Brother and Densie for the Energizer Flowers!

In addition to my beautiful sister, I have a wonderful brother down in San Diego. We arranged the surgery in a very short amount of time (discovering the tumor growth in March and then making a decision and scheduling the surgery for May in April). Hence, he was unable to be here but he and his wife surprised me with a beautiful and very LONG lasting floral arrangement. I have enjoyed the flowers the entire time I have been here at my parent's home in Oregon.

I am going home to Washington state today and mom and I were just commenting at the breakfast table this morning about how the arrangement is finally starting to peter out. Take a gander at the flowers in the bouquet to remember when you want to send some cheer to someone. The purple and yellow sprays go on forever and you can make a dried arrangement out of them with the small red mum type flowers and the yellow spray roses. SURPRISINGLY, this particular red daisy lasted a very long time! And the astromelia lilies (yellow but come in an array of other colors) are long lasting too.

Thanks Scott and Denise! I enjoyed their festive and bright cheer every morning and at every meal everyday! :)

Wednesday, June 01, 2011

Thank you Aunt Willie, Kris, and Grandma & Grandpa

The Kindness of Strangers

Left: Harley in the lower lobby talking with Jaine and Jessica visiting from New York.

Center: Jessica, Me, my new fish "Hope, and Jaine in my hospital room Wednesday night, along with Merrie, Harley, my mom, and sister not pictured. hehe it was a full room that night AND my friend Vaughn also visited earlier)

So this is the story.....Wednesday I mentioned I was out and about roaming the 2 floors below where you can go outside. At first I was with Harley and my sister. At some point Harley disappeared and I cannot remember exactly when. After I tired of being outside and figured I better head back to the room so the staff did not think I went AWOL, my sister and I headed back to the room, But after spending 2 days IN a hospital room, I had little desire to get back in bed or my chair and hang out there. This hospital is amazing and I was longing to hang out in my PJS sitting in the comfy lounge chairs looking out toward the view of the Willamette River valley below with Mt. Hood in the backdrop. What a rare and wonderful opportunity!

So I excitedly grabbed my Planet Ocean book and another book. While there my dad showed up and we were all sitting there reading. Oddly I was not engaged in the ocean book and gave it to my dad to puruse through. Then Harley appeared with my surprise...Merrie! She had a bag of surprises for me so we went back up to the room. My dad was looking at the ocean book so I left him down there with Harley who was on his cellphone.

At some point my dad got up and left leaving the ocean book on the coffee table there for any other patient or visitor to pick up. Maybe he did not realize it was mine? So while Harley was talking he overheard some girls commenting about the ocean pictures which caught his attention. In the midst of his phone conversation he started to think to himself "Hey that sounds like my wife's book!" He turned to look and of course it was my beloved ocean book (I have had a facination with marine biology since I was a little girl and as expected, became a scuba diver and studied it to follow my passion. At home Planet Ocean and Coral Reef DVDS are part of my personal collection.)

Being his extroverted self, Harley struck up a conversation with the young ladies and told them all about me and why we were there. Very moved by my story and interests, they felt compelled to surprise me with a pet fish that they brought to my room later that evening! How incredibly sweet! I am still floored that complete strangers visiting from the other side of the country were so thoughtful and went out of their way to bring me cheer and something very meaningful.

THANK YOU THANK YOU THANK YOU! is all I can say. I am extremely touched and will remember your kindness and hope I can have a heart like yours and one day pass it on.

"Hope" is doing very well and has been on the window sill next to the breakfast table where I see him and say hello when I feed him every morning. :)

Swimming to bring me Hope

"Hope fills our hearts with joy, even when our hearts are breaking."
"It is hope that gives us an invincible spirit."

"Beauty does not come with creams and lotions. God can give us beauty, but whether that beauty remains is determined by our thoughts and deeds. " - Delores Del Rio

I confess to you that I first had a very difficult time with morale when I got out of the hospital. I have not really discussed it yet. I will tell you that my attitude which may surprise you was very ugly - DEFINITELY not a spirit of beauty. Therefore, I really wrestled with whether I should write about it.

When I first became aware of my face, it burned me something raw. I was filled with anger and felt I had been betrayed. Thinking back I do not recall ever really blaming God for my cancer or the NF2 and the struggles I have had with it. But for some reason I did this time and asked over and over again "WHY?".

To this day I still have difficulty coming to terms with my face and sometimes feel the pain of sorrow. I try to push it back and recognize it as the face of evil trying to steal the joy from my life. So I slap the evil in the face and keep on living with a laugh that I will be victorious over it. One of my focuses very important to me is charity and working very hard to bring awareness of this disorder and help people in need where I am able.

Recovery physically has been pretty marvelous and miraculous! This week despite the pain in my leg still, I ran about 19 miles, hiked 2100 feet of elevation gain, returned to the gym, and walked my dogs too! My focus it to participate in the Seattle Rock and Roll half marathon next Saturday in support and to cheer on the NF endurance team for morale and thank them for their dedication to helping those with NF. I feel my role there is important and plan to run/ walk the half marathon with the intent to run half of the distance. It will be a presurgery record for sure!

Back to Hope.....

Hope is the name of the fishy Jaine and Jessica brought me at the hospital. He brings me Hope and that is why I named him as such.

When I had cancer at the age of 21, I was away from home in college. I was afraid to sleep at night or in my room (they say it is the fear of dying alone). So what I would do is sleep on the couch in our apartment and watch my beautiful angle fish swimming around. It relaxed me and eventurally put me to sleep.

Fish have always had a calming effect on me. It is one of the reasons I am a diver. At times I have been so at peace and relaxed while diving that my breathing became very deep and I could almost go to sleep!

Hope is so great and is doing wonderfully fitting into our family. In fact I think the dogs might be just a little jealous when they here me come down in the morning and cheerfully talk to Hope. He gets really excited and flutters his fins. For real! My husband was so amazed! He sits on the counter in the kitchen so he is able to watch all the action and I see him all day. Like the dogs, he brings me so much joy and hope.

Thanks again ladies! You have no idea how great your inner beauty and compassion is to me!

Thank you to my special friends Erin and Carli! :)

If was awesome!!!
Thursday before I was able to be discharged from the hospital, I had to have a much less complicated outpatient eye surgery to implant a gold weight into my eyelid. That is one of the reasons why I am wearing an eye path....to protect my eye. Plus it kind of looked bad and I also wore it often to read. I still do as the double vision has been lingering.

In the morning after breakfast and before my procedure, this lovely purple orchid arrived from my fellow lymphoma survivor friend Carli and her mom. Erin who is a former teammate of mine from my Team in Training time with the Leukemia and Lymphoma Society (of which I am a supporter and continue to be a participant and team captain in the largest tower climb in seattle and the NW). Erin and I walked the full Seattle marathon as an LLS fundraiser in fall 2006. During that time, her daughter Carli, just shy of 6 years old, was our honored patient for the team and had been going through chemo for 2 years to treat non Hodgkin's lymphoma (I had Hodgkin's Lymphoma that was easier and more responsive to treatment).

Carli is now 10 and I am both flattered and honored she remembers me!

Thanks ladies! The beautiful orchid was such a gorgeous surprise! I admire it everyday! I never had an orchid before but LOVE to visit Volunteer Park conservatory and take in the scents and beauty of all the orchids. It has been a long standing tradition for me to go there yearly to find peace and feel better in the face of all this medical stuff. When I had my MRIs in Seattle I used to go there to visit the conservatory afterward to sit there and find a meditative peace as all this can be quite draining. As a matter of fact when dealing with the stress and worry of facing another surgery only a couple months ago, I made a visit there to help find my peace.

Thanks for giving me "peace" to bring home with me! :)

Thank You for the Cheer friends and famiily!

LOVE the rotating art at OHSU

While not the most gorgeous of paintings. this wall size piece caught my eye because of the vibrant color, it is large, and there is definitely meaning in it. I discovered it with my sister when I was venturing around on my walk to go outside. At that stage I still very much had distorted vision so that is why I really like the largeness which helps me pick up on the detail. The more I gazed at this painting, the more I was drawn in and details started to pop out at me.

By the way, that is one of the things I love about scuba diving. If you hover in front of a niche of life long enough, all these little creatures you did not notice at first start to appear before you. HAHA I think photographers love diving with me because I get excited about finding things and will point them out to people or start swimming around to get people to come over. I am not too shabby at my species identification either as my background is in teaching and science with special interest in marine biology.

Getting back to the painting........Despite the rugged tom boyishness I often exhibit, ever since I was a little girl I have enjoyed tea parties. As a matter of fact, I was enthralled by the diversity of hats the lady guests wore to the royal wedding (and yes I was incredibly excited to watch the wedding taking place while working out on the cardio machine at the gym!). The hats intrigued me so much that I began to dream of holding a special tea party where we all wear the most creative hats that we can find or make as a future fundraiser. It can grow and develop but immediately my vision was to have a little gathering on the deck of our home this summer to celebrate my accomplishment of surviving the surgery - An "I made it!" party.

Reflecting on my thought after the second surgery, I came to the conclusion that any kind of surgery is a REALLY big deal to face and go through. We celebrate all these happy moments, birthdays, weddings, babies, graduations, new homes, new jobs but I think that making it through a major medical trauma is an incredible achievement one should rightfully celebrate which should not just be a passing sigh of relief. Like "Wow! Holy crap you made it!" similar to conquering a HUGE mountain such as Everest.

Don't worry all! You do not need to bring gifts. I have been spoiled enough for this surgery. If you REALLY feel compelled to give something, I will happily accept donations to our charity the "HELP STOP NF" foundation with the goal to help improve the lives of those living with NF2 through awareness, education, and supporting NF2 research. For those nearby, just come have a relaxing afternoon tea time with me enjoying life in the sun with butterflies and birds flying around surrounded by a natural style NW landscape. My mother-in-law gave me a BEAUTIFUL tea set painted with lovely butterflies that I am craving to use for a special occasion!

The deck, made of a special wood called IPE as the prior deck was rotting with holes in it, is one of the first improvements my husband made to our home back in 2004. He designed and built it himself with the help of a carpenter coworker of his at the time, Craig, and Craig's brother Brett, Harley also expanded it to extend fully across the front of the house whereas there were only shaky wooden stairs going up to the front door before.

Originally the plan was that I was going to help with the building process which I DID help with the HUGE tearing down and transplantation of 17 large trees and shrubs beforehand in May 2004. However, I had radiosurgery (my first treatment) in July 2004 and became so ill that I questioned whether or not I was going to live .It crossed my mind of whether I could get by without a home nurse to help me. It was a scary time. When Craig was over helping Harley one day, I remember getting mad because I was frustrated the house was getting terribly messy. I was too sick to keep up. Between working 12 hour rotating shifts of either 6 am to 6 pm or 6 pm to 6 am AND spending all his spare moments working on our enormous deck, Harley had no extra time or energy to do the cleaning that I was unable to do because standing up made me too dizzy or cause me to collapse. Angrily I shouted out "I need help. I think I am dying here!"

Fortunately I pulled through and THANK GOD my husband lovingly made this deck just in time! It is one of the first adaptations he has made to our home to accommodate my continually changing life with NF2. The stairs are a wonderful and safe single set with no turns and about the best handrails I have seen on a deck which I have used numerous times over the years. (for photos of the deck you can check back in the archives in May 2009 when we had a birthday party for my dad.) As the months progressed post radiosurgery my balance became worsened to the degree the old stairs and deck would have been dangerous causing me to seriously hurt myself. Further, having a large and safe outdoor space offered me a wonderful space outside to recover in peace with the dogs enjoying the summer sun, trees swaying in the breeze, puffy clouds overhead, butterflies fluttering by, and flowers blooming in pots on the deck which were easy for me to take care of.

After standing there looking deeper into this painting like an optical illusion, fun little details telling the story of the painting began to jump out. It was so interesting to me that I had to take pictures to capture its essence to keep in my memory. I hope you enjoy them too! :)