The Surgery - Are you sitting down?

The surgery again is a very typical procedure for NF2. Since the hallmark of NF2 is bilateral acoustic neuromas -AKA vesitbular schwannomas (tumors on both auditory nerves in the brain on each side of the head), most have this type of surgery at least twice.

Above is a comparison of MRI images taken of my brain over the last 5 years. The top left is the latest date and the bottom right image is the most recent.

Top row left to right:

1) August 2004 2) April 2006 3) September 2006

Bottom row left to right:

1) December 2007 2) March 2009 3) August 2009

As you can see, I have been dealing with a number of tumors and just not one or two. In the first image from 2004, the large tumor on the left (which is actually my right side) had become larger after the radiosurgery attempt to stop growth in July 2004. Although it begins to blacken on the consecutive images, the outer perimeter was bright white indicating the tumor was very much alive. In September 2006 you can see how my brainstem is getting squeezed between the 2 tumors and was nearly pinched off within milimeters prior to my first surgery a year later in september 2007.

on the bottom is what it looked liked after the September 2007 surgery. As you can see there is still tumor left behind because it is attached to my brainstem. The removal of it could be very disasterous and cause me harm. Therefore, as much of the tumor is removed that the surgical team feels is safe to protect me from damage.

How this is done for such a large tumor from what I understand is that they get inside the tumor (sort of like puncturing an orange). Then they use a sonicator which vibrates and breaks up the inner material which is then sucked out. What is left behind is the outer portion or "shell" of the tumor adhered to the brainstem. This procedure is what is know as a "debulking" surgery. It means they make the tumor smaller and take out as much as safely possible but do not do a full removal.

Now about the other tumors everywhere.....In 2007, they were able to remove the tumor adjacent to the vestibular schwannoma. This additional tumor was of a different type known as a "meningioma" and was not adhered to nerves. Therefore, they were able to entirely remove that one.

Now, to the surgery this October......Since 2004, we were very aware that I would most likely need to have surgery on the other vestibular schwannoma which was not radiated. Further, with the great degree of difficulty I encountered from the radiosurgery for the first tumor, it was not a good idea to try radiosurgery again for this tumor type. It just took me this long to accept it. I was told I needed to have surgery again a year and a half ago but I was not ready yet. :-) In January 2008, I was doing pretty well with recovery from the first surgery and I felt I really needed a break before doing it again. By September 2008 I was doing great and there did not appear to be significant growth so we postponed surgery.

Unfortunately, my scan in March 2009 revealed signifcant growth where the tumors needed to be seriously addressed. The tumors seemed to merge making it unclear that it was not one large tumor. We believed it was just 2 tumors again but when they opened me up, they discovered the mass to be a cluster of 3 tumors in addition to the vestibular schwannoma on the acoustic nerve.

At my checkup last month, the pathology report indicated the cluster of 3 tumors to be of 2 different types (a trigeminal schwannoma on the trigeminal nerve and 2 more meningioma). I believe those tumors were removed entirely. It will take some time to see the result on an MRI scan because the swelling needs to go down of the scar tissue. If you will notice the tumor removed in 2007, continues to get smaller. It takes a long time for swelling to go away.

The picture of the incision is from a day or 2 after the surgery. It is very typical and the approach is known as "retrosigmoid". It healed quite nicely and I feel that it is covered by new hair.

Question you may be pondering.....

If some tumor is left behind, will it still grow?

Yup! Hopefully mine will not grow back for a long while and not until some other treatment becomes affected. There is no cure. That is why it is important to me that you help me to support and fund NF2 research.

Please feel free to ask me any questions on the blog and you can ask anonymously if you prefer.

Today We Are Very Grateful

Weeks before my surgery, we decided to celebrate Thanksgiving at our house as we were not sure how well I would be and if ready for long travel. It turns out that my dad had to go to Finland for work this week leaving mom on her own. So it was a perfect plan to have her over with my sister.

As you can see, I am very alive and well and the reason we all are most grateful today. Quite a change from the previous pictures, eh?

I will get back to continuing the story and explanation of the surgery hopefully tomorrow. A brief update for now is that at my checkup in Portland on Nov 5th, I was given medical approval to walk the Seattle half marathon this Sunday. (sorry if I am repeating info from a previous post) With the extremely short training time, I got to it right away and the day after my friend's memorial on the 7th, I walked 48 miles over the next 8 days. I tapered off to shorter walks last week and this week to rest up for the event this weekend. Sunday we did our last long training session of 8 miles and then I have been doing short incline and hill training everyday since.

Now it is just a matter of being able to get up before the crack of dawn on Sunday and stay awake for our 4 hour journey in the rainy and cold PNW.

Saturday I will be easing back as we need to go to the expo and then we are taking our mom to the christmas lights at the botanical garden.

Hope you all had a wonderful thanksgiving!

1 month post surgery anniversary

Yay! I made it one month post surgery with a very remarkable and rapid recovery! Above are my photos immediately after my surgery 1 month ago today when I was in the recovery room and ICU. I am pictured with our friend KC while Harley takes the photo. When waking up from a brain surgery, it is rather common to be nauseated and for me, I tend to vomit. First of all, the being revived part is a huge shock to the body and a difficult one for mine. This time however, was much more tolerable. Because I ate smart the day prior and kept it light and not spicy, there was not much to vomit and it did not burn my esophagus or mouth. I threw up a little but in the photo I am dry heaving more than anything. It is not fun but I felt more like I could handle it this time.

After my 2007 surgery was a terrifying experience which I have been dreading for 2 years as I knew I needed another surgery (I put it off as long as I could). Back then, I reacted violently to the anesthesia and the revival process where I was rudely awaken by chills, convulsions, and constant hard vomiting. This time they used different drugs to bring me to consciousness more slowly which was so much better!

So today -not too incredibly exciting as I have been suffering bad migranes all day and another one is coming on at the moment. So my production was all shot for the day and I actually took a real "rest" day where I did not go to the gym or walk the dogs. As a matter of fact, I took 2 naps and got an additional 4-4.5 hours of sleep!

I HAVE been back to the gym and it felt great! My first day was Monday which was exactly 1 month since my last visit (Oct 16th before we left for Oregon). I also managed to go last night and do some resistance exercises, abs, and some very light weight lifting on my arms. After not working them at all for a month due to medical restriction, it felt heavenily to put them to use.

My weight did pretty good (lost 3 lbs but then gained 8-10 which I had planned for). I have about 5 lbs of fat I gained to lose. I know it is fat because when once I could eat again and was on steroids, I sort of went nuts eating anything I wanted binging on all sorts of sweets. I have been trying to wean myself off chocolate (the after halloween candy on sale sure did not help matters) and eat more normal healthy food. However, I cannot seem to break myself of that gigantic container of chocolate covered raisens Harley opened which was intended as a gift for a friend (sorry Mike!).

Day of Admittance - Surgery Day

It was rather nice and laid back to wake up rested at a more reasonable time (9 am?). Instead of waking at the crack of dawn at some crazy hour like 4:30 or 5 am for a 6 am check-in, I could sleep in because I did not have to be there until noon. :o) Now that's the way I like it!

I half had an insane idea to get up and go for a run with my extra time. Fortunately, I came to my senses and remembered that I cannot eat anything. Still the thought was there until I also remembered that I cannot DRINK anything. Now that would just not fly after a run! Therefore, I took a short morning walk with my parents, their dog, and my sister around the neighborhood and through the lovely fall canopy draping the woods.

On the ride to the hospital, I started texting people in my text phone list (it is not very large) to tell them I was having brain surgery. I got too busy beforehand and did not have time to let some people know before I left home. I also updated posts about the surgery on facebook using my text phone.

I was a little stressed out because we got lost (Harley was using "Lola" - aka GPS) and actually was about 10 minutes late to my check-in.

When we got there, things went rather quickly from one to the next unlike before. Since I was the only brain surgery patient for the day, there was no waiting and they had my surgery time scheduled. Shortly after I arrived, I was pulled out of the hospital admittance waiting room where my family and our friend KC stayed. Harley came with me into the admissions office.

During admissions they verified who I was, who my doctor was, and what procedure I was about to have. They also asked if I had filled out an "Advance Directive which, LOL, I kept confusing and called the "Prime Directive". But since it had only been 2 years ago that I filled it out for my last surgery, it was still valid and I did not have to go through that whole process again.

The "Advance Directive" is a long legal form you sign choosing the instructions you want should something happen to you rendering you unconscious. You need to appoint two people to ensure medical staff carry out your wishes and a witness to sign it. It can be a difficult emotional situation if you are caught off guard. I did pretty well the first time and read it while my family had went to the cafeteria to have breakfast. When they returned, I was ready to maintain composure and explain what I had decided and what I wanted. I chose Harley of course as the primary person of responsibility and my dad as second. You want to choose somebody who can make logical decisions and handle making difficult ones if necessary (unplugging life support).

So this time we were able to skip all that and move along. They were ready to take me already down to surgery prep when I finished with admissions which was maybe 15 - 20 minutes long! Sadly, I had to leave my family behind as only 1 person can be with you in surgery prep due to limited room. Surgery prep is an open room with 4 beds. You basically get dressed in the hospital gown, several medical staff come to ask you who you are and what is being done to verify it is correct, IVs are drawn, your head is marked with a marker to show where the surgery location is, and the anesthesiologist comes to talk to you. During this whole process of time, family members/friends can take turns coming to see you to wish you luck and say goodbye (for the morning or afternoon of course ;-) ).

You are probably wondering what happens as I cannot hear. How do we communicate with so many people coming and going? During this time and also for admissions, the hosptial provides me a real time captioner for accommodation. A captioner is somebody specially trained in court reporting and the use of court reporting equipment. The captioner types up everything being said very quickly "in real" time that I read on a lap top computer. So it is pretty much like having a normal conversation with me except I am looking at a computer instead of directly at the person speaking.

There was a lot less time for visiting as I was taken into surgery sooner. So I had a very brief moment to share with each person. After they had all left, I tried to get myself into the frame of mind for surgery. I carry around a "surgery binder" with all my medical information but also had some notes and special cards from my last surgery which I read. They were notes of love and encouragement.

One in particular was from my friend Skip while we were having a lunch visit. He always was great about writing to me and even always brought his own notebooks! One conversation we had was particularly touching so much so that I wanted to keep what he wrote down to remember it and take it out at times like this (at the time he wrote it I did not know I would be having 2 brain surgeries). It uplifted me, reminded me of my purpose, and gave me the strength to face the challenge ahead.

Oh, about my friend Skip.....if you had not caught on from previous posts, he is the special friend of mine who passed away a little over a week before my surgery. It was a hard week (not only did my good friend die but I nearly caused myself to go blind in one eye by accidentally mistaking a bottle of nail fungus medicine for eye drops and putting it in my eye!). How I channeled my grief and compartmentalized it, was to approach the surgery as the last lunch date we never got to have. The day we were supposed to meet, his blood counts were not good and they admitted him to the hospital where he spent a month for the most part.

So for the surgery, I approached it as the last chance we were going to get to see each other and visit. That way, I actually looked forward to it and was much calmer. I could not wait to see each other again (but I could wait to have to go through all that pain and sickness after waking up). As usual, I was running late and the surgery was going to be a little bit later than projected. I remember quietly thinking to myself and telling Skip I would be a little delayed.

It was not long when it was time to wheel me off. I do not remember much about it. They must start to administer calming drugs or anesthesia before you get to the OR. I just remember I think a green wall in a hallway with dive photos that I was really excited about. Then I was in the OR and noticed it looked better - the lights were not painted bright orange. After that, I was out until they woke me up in recovery.

Are you wondering if I remember being out or seeing my friend? No, not at all. It was like when you go to get your wisdom teeth taken out. You just get to sleep and then you are being woke up. It was not that pleasant the first time.
Anyhow, I imagine I am not meant to remember because like a good movie or book you do not want to end, I may have not wanted to end my visit or being on the other side. I was meant to come back and this is how it is. For the time, my world is here.

The Day/Night Before

pictured - mom, dad, Harley and I at "The Spot" sports bar in Scappoose
Bottom photo - me in front of the Hammond beach house in Pacific City on the Oregon coast


The day before surgery was gorgeous at the beach and we were reluctant to leave! However, our time and purpose there had come to a close. It was time go back to Portland to face reality. We were very fortunate and blessed. It was a fantastic refreshing weekend at the beach with beautiful fall weather. We packed our things, cleaned the house, said our goodbyes and headed to my parents new home in Scappoose just outside of Portland.

When we arrived, Harley, my mom, my parent's german shorthair dog Hunter, and I went for a long walk exploring their neighborhood and the ridge overlooking the valley where they live. Just as we had finished the walk, my dad arrived home from work. So we all went into town for some dinner.

In the small town none of us knew yet, there did not seem to be many options but I found exactly what I needed and was looking for. This time around, I wanted to go for something simple, light, and not too spicy which would give me acid reflux up until the surgery. I thought about this for many months before surgery and determined the best thing to probably eat beforehand would be chicken and mashed potatoes.

Down the road we traveled we found the choice of two local restaurants. The one we chose was a sports bar called "The Spot" - It was pretty cool but truthfully I was worried that it might be a strip club at first due to the peculiar sign outside and the name. ;-) It was all good however, and we were able to have a very nice intimate dinner with my folks (not overly crowded where we had to wait and a homier feel to it).

The restaurant had the perfect menu choice for me available in a smaller half order (what is sometimes referred to as "ala cart"). The meal consisted of chicken breast brushed with Jack Daniel's BBQ sauce, mashed potatoes, steamed brocoli (some of the best I have ever had), and a small salad. It was like they knew I was coming!

For most of the day, I had kept it light and consumed mostly liquid things. Before my last surgery, I foolishly gorged myself at dinner the night before leaving me with the feeling of a heavy rock in my stomach and a continual acid reflux of spicy thai curry all night long. This was a horrible mistake not only because I could not drink anything and kept burbing up curry before the surgery, but also because it was terribly awful to throw it up after the surgery.

Knowing that it was most likely that I would get sick again after the surgery, I tried not to overeat and to keep to milder foods (LOL not to eat zingy curry at a place called the "Typhoon" - LOL). I contemplated what foods would be the the easiest to throw up - liquids and things liked mashed potatoes. Sounds strange I know, but it is quite an important consideration in order to make the surgery experience as tolerable as possible.

After dinner we went home and I went to bed at a reasonable time to get more sleep before the surgery this time. Following my 2007 surgery, I could not sleep for a month due to the steroids and finally had to beg for a prescription sleeping pill (Ambien). Therefore, I wanted to be as rested as possible before this surgery in anticipation that I may not get sleep for awhile.

Finding Peace....... at the beach

After months of physically training, living life to the fullest, and getting as much done around the home as possible the weeks prior, it was time to mentally prepare for the surgery. I find no better place to do this than the beach on the Oregon coast where I have been visiting since 2003.

My sister's boyfriend's parents have a home right on the beach which they have graciously opened to us for us to stay at before both my surgeries as well as getaways over the past 3 years. We have been many places in the US as well as the world and this ties with Sedona, Arizona as my favorite place of relaxation and regrouping.

I cannot say either is better because they are completely different environments each with their own special uniqueness. I will say though that the sea just really is in my bones and hypnotically puts me at peace. It is the same effect portrayed by the character Kevin Costner plays in "Message in a Bottle", Diane Keaton in "As Good As it Gets", and most especially the characters in the movie "Nights in Rodante". The sea is my love and it is there that we both can relax, reflect, talk, and regroup. Something about the ocean and shore has that kind of power. Thus, it is the perfect place for us to be before something so emotionally shaking and potentially life altering.

Before my first surgery, I think we felt a deep sadness and fear. There is of course always a little sadness and fear, but while we were at the beach this time we focused on forging ahead and keeping it productive. Being at the beach was our opportunity to get in the "right" frame of mind to endure what lie ahead. For me this is especially important because I really believe that attitude IS everything. The doctors and God can only do so much but I really gotta put in some effort too. I won't lie and I do not mean to scare those of you who have not gone through it but it is tough going through a surgery emotionally and physically. You gotta have a place of peace in your mind to retreat when it gets difficult and a positive will.

On the first afternoon at the beach, I took a run alone out of town. I was not really sure where I was going, how far, or how long I would be gone for. I just went out and ran with no watch and nor set distance contricting my mind to mileage or time. It was beautiful to be so free! I just started running, over a bridge to a slough, ran to town, ran out of town, ran over another bridge crossing a different part of the slough, ran through the fishing village, and found myself running down a country road where I had never been. I pondered where I would go and how far I would run down this road. With the direction I was heading, it most likely would eventually meet the beach again. So I continued running until the road came to a T at a sandy cliff overlooking the ocean and dotted with scraggly bushes and trees.

I scrambled down a rocky sandy gully trying to find a way down to the beach. When I reached the bottom it stretched out to a sandy embankment which seemed too high and too ruggedly dangerous for me to climb down in order to reach the sea. So I sat on the cliff admiring the ocean waves and the fluffy clouds overhead as a gentle breeze brushed past my hair and gently caressed my arms. The warm sun enveloped around me and I felt surrounded by love instead of impending doom. The feeling was exactly what I had been in search of. I did not want to leave. I wanted to capture the feeling, bottle it up, and take it with me so I could unleash it whenever fear, anxiety, sadness, or anger appeared.

After a long while of savoring as much of the moment as possible, I was getting a little chilled which was my message and reminder that it was time to go. Happily I stood up filled with satisfaction and hope. I felt I had achieved and found that calming place I had been seeking. I crawled back up the hill to the T in the road. The sign along the road heading south down the coast read 3 miles to Pacific City. To continue my exploration, I chose to head down this new route.

Shortly after the sign I came across a cross walk leading into a forested area along the shore. Curious if it led down to the beach, I chose to follow the pine needle path. Sure enough it led to the shore dotted with black lava rock and sandstone that I went to investigate. Then I ran 3 miles along the spansive stretch of beach until I met cape Kiwanda and the giant sand dune our traditionally climb.

This time however, I trudged gradually up the back side and then rested at the top to stretch out and then sit and admire the view. For a time, I had the whole dune completely to myself and was the dominant figure atop the huge mound. Eventually a family and their dog and 2 teens joined me which was my cue that it was time to head down and back to the beach house.

More pictures from the beach......Here.

THANK YOU CHRISTIE AND DAVE FOR PROVIDING SUCH A MARVELOUS RETREAT FOR US!

12 miles

I know I wanted to take you back and I will but I also wanted to post a quick update with photos. As you now know, I am training to walk the Seattle half marathon this month. I have had some bad muscle pain this week from steroid withdrawal and was hurting pretty badly friday night. Yet, I managed to get in some very last minute training very quickly before it gets too close to the event. I trudged through 36 miles this week in the cold, rain, and even the dark by head lamp! (probably about 4 or 5 hours). Then yesterday, my sister, who is walking the half marathon with me, and I completed our long training session of about 12 miles yesterday in the rain on the Preston-Fall City trail east of where we live. So I have covered 48 miles in 8 consecutive days. Today will be a rest day and we will probably take the dogs on a nice leisurely walk at the dog park.

Oh, and I officially registered for the marathon at the Foot Zone after our walk. Yes! So I am really going to do it! :)

To see photos of our adventure, click HERE.

P.S. - the above link should now work to view the photos. I had not finished captioning them earlier and forgot to add the link. Sorry.

Have a wonderful week!

Well Here We Are!

Top photo - Team in Training 2006 Seattle full marathon walking team; me in blue jacket on the left, coach Brent in blue the 3rd from left; my teammate Katie who I crossed the finish with to the right of Brent; Karen, Skip's daughter to the right of Katie, Skip the very tallest in the background center of photo. and our mentor Esther on the far right yellow jacket on black garbage bag for rain/snow protection

Me, Skip, and my sister Michelle at the 2008 Big Climb for Leukemia event at the Columbia Tower in Seattle; Michelle and I did the event and Skip was there to cheer us on and support us. He was so proud!

Photo right - Skip and I in Sammamish during one of our lunch meetings a couple weeks before my first brain surgery in 2007

Hello! Sorry I have been gone for so long or very sparse. When I returned home after the surgery I became very sick and my first night home, I paid a visit to the Emergency Room in a nearby town for rehydration and IV administration of my meds. It was a combination 0f things and partly just the body's reaction to such an invasive surgery and a substatial shift of the brainstem. It is not uncommon to experience a lot of nausea after such a surgery. I knew that and knew I had to go through it again. It is one of the reasons I worked so hard and actually "trained" to have a surgery. I had to make my body strong to endure the physical beating it was about to take and to tolerate it.

Once I was on the road to feeling better, I was hit with a continual episode of double vision making it extremely difficult to read, type, and use the computer. It was this week that it settled down and started to subside. Of course by then I had LOTS of other things to catch up on - one of which was writing out cards now that I can actually see what I am writing. I have had quite a bit of cleaning to catch up on as well and just when there was not already enough to do, I decided to start training to walk the Seattle half marathon at the end of the month.

No Joke! I am really going to walk 13.1 miles on the 29th and was given medical approval a week ago at my checkup in Portland. As of today, I have accomplished walking 36 miles this week in the cold 40s, rain, and dark by headlamp. 3 weeks ago I could not even stand getting out of bed! I have been blessed with a remarkably fast recovery and Thank God the horrible stuff passed quickly. There were times worse than when I endured chemo for cancer. My body hurt really bad tonight because I have been going through a steroid withdrawal now for over a week now. I am back on pain meds at night and 4 IB profen at a time. I have been between migranes, double vision, chills, and a terribly deep muscle and bone ache similiar to the pains from the chemo. I gotta get to bed here shortly because tomorrow my sister and I are going to attempt our long 12-13 mile walk. So I am hoping to be rested and ready by the morning.

What my dream is of doing here, is to take you back to the days before my surgery with photos and bring you right up to present. I want to share photos from my place of peace and serenity at the beach, the moments before surgery, ICU and the hospital, halloween, and the lovely fall colors Harley's mom and I enjoyed at the botanical park on our last day together when I was finally well enough to take her out for something fun before she left (she was here to help care for me and nurse me back to health - mission accomplished!).

Until then, I have to get some serious recovery sleep and hopefully complete our longest training day before the event in 2 weeks.

Was it planned for me to walk in the marathon so soon after surgery? Not at all. It was not even a thought in my mind.

So what happened?

A week before my surgery, I lost a very special friend to Leukemia. We had met while partcipants in the 2006 Team in Training program where we walked the Seattle marathon together. Right away we hit it off and quickly formed a very special bond. You see, not only were we both blood cancer survivors and the only ones on the entire team, but we also shared hearing loss and a life of uncertainty living with something incurable. We were very aware of our mortality, how short life is, and the desire to make the most of life and make it the best.

Our former coach, sent me an evite a few days after Skip's passing inviting me to join he and his wife in honoring the memory of our dear friend by walking the Seattle marathon and meeting at the finish. At first I was kind of bummed to not be able to participate. We were not even sure if I would make it through the surgery or what condition I would be in. I imagine many people undergoing the same surgery would not be considering doing something like this. Maybe that desire and grief is what I needed to get me through everything and was the motivation necessary to make an absolutely astounding recovery in record time.

Thanks Brent, for offering up the challenge, providing a positive and productive channel for our grief, and a most excellent way to remember and honor Skip! It is perfect and very meaningful! I am glad that I am able to partake in this with you.

Also to come, I will be telling you about my special friend, the wonderful lessons he taught me by just being himself, sharing photos, and revealing what else Harley and I are embarking on to which Skip is one of the inspirations.

Goodnight and enjoy the week ahead!

Halloween Fun

Me dressed as Red Riding Hood and Harley disguised as "Grandma"

I made a meatloaf shaped as a witches hand with red onions for nails for the Halloween party we attended.

Morning Sun Breaks

Saturday, halloween morning greeted us with the sun after many bleak rainy and sick days. After a 2 mile afternoon walk the day prior, I felt up to getting out and about. My mother in law Cheryl and I took a trip to the farmer's market in town where we paraded the dogs around in a little doggie halloween fun. Later, we stopped at the famous Remlinger farm for our strawberry rhubarb and berry pies.

I had decided I was well enough to go out that evening so we spent the rest of the afternoon last minute shopping for a costume for myself. We missed the corn maze but were able to take in the 1 mile walk through the haunted forest at Beaver lake friday night.

Thanks Paul and Jake for inviting us to your home so we could get out and enjoy the

festivities. The party was a hit and Harley really enjoyed being "creepy grandma".

For now I need to keep the blog posts short and just post pictures as I am having double vision problems and it is hard to see and type. This is a common side effect after a brain surgery which I am hoping passes soon. Today I also had a little bit of a steroid withdrawal as I have ended my taper. I had a bad headache concentrated around my eyes. Thus I could not read nor watch captioning on TV. I spent most of the day resting, sleeping on and off and I watched a relaxing underwater documentary (just film).

Have a nice week all and thank you for reading/following my progress.

Pre-Halloween Hospital Fun

My family and I always like to have Halloween fun. No way is a surgery going to get us down! Last week my mom brought me a pumpkin pail full of candy and a lovely cactus blooming with orange flowers in another pumpkin tin. Among the candy were crazy wax lips we had fun playing with. Pictured is my sister Michelle and I and my mom

Coming Back

Short post because I need to rest. Today was the best day so far for me - 8 days post brain surgery. The week has been very difficult. I was decieved in thinking being released from the hospital on Saturday meant I was home free! Unfortunately it did not work out like that. I had a really rough time and got sicker to the point I needed to visit the ER at home last Monday.

It is so strange. You get so tired of the long waiting to stop being dizzy, nauseous, and waiting for IV drips that it seems like lots of time has passed by. Yet I still have to remind myself it has only been a week. I want to do everything right away and it is hard to wait it out. The waiting if you are familiar with being in a hosptial or seriously ill is the tough mental and physical part.

Anyhow, early in the week I could hold no food down and little drink so I became very ill. As a result, I was hit with the double whammy of not being able to take the medicine adequately and also some drug withdrawals from not having it. It was so rough. I hate that part.

I have been gaining back strength and eventually have been able to venture outside to enjoy myself. Wednesday I walked 5 laps up and down our driveway to the mailbox. The dogs were so happy to see me outside again and not lying there like I am dying in the daybed. They were quite distraught. Thursday we went for a nice leisurely lap around the huge Marymoor dog park in Redmond. Then today we went further taking a lovely 2 mile stroll on the Snoqualmie Valley in Carnation past the famous Remlinger farm. It was a warm 60 degrees and the sun peeped out a little bit. Hope you enjoy the photos as much as I enjoyed getting out in the fresh air for a change!

Later in the evening, Harley's mom and I visited the local haunted forest event. We plan to go to dog halloween parade tomorrow at the town's final farmer market of the season and depending on the weather may take in the corn maze - one of my favorite seasonal activities to attend.

Out and About

Today was so much better! The post surgery pain seemed to linger for 36 hours where at first I felt stuck in bed barely able to rotate my head or shift my body from soreness and oain radiating from my incision on the back of my skull down through my neck.\t

It seems once the steroids kicked in or when I startes them the swelling went down anderapy were satyain subsided. My last shot of morphine was this morning ( or rather yesterday morning - it is 2 am right now). This afternoon the nurse took the central line IV out of my neck as I no longer needed it for morphine injections.

After my MRI scan and PT session today, I never went back to bed except for the 15 minutes to half hour I lied down after the central IV line removsl. hehe I even told not to wander the floor by myself as I had been caught doing by myself when I went to get ice water.

Very briefly they tried having me use a walker but I was too fast so we moved to one lap around the floor with a 4 prong support cane. when that seemed to go very well, we switched to a single cane which really acted as more of a security blanket. Both physical therapy and occupational therapy were satisfied that I had the skills to go home and they did not need to see me again. So maybe I will be discharged tomorrow.

I stayed out of bed and wandering around the room or in a lounge chair for the day/ In the evening Harley and I took a stroll 2 flights down onto the garden patio outside. Then we made 5 quick laps around the brain surgery ward floor. I became more independent as trhe evening progressed moving around my room as if nothing happened to me.

The only down side right now is that I have a mojor facial movement problem which at first glance looks fine but is not. I really pray that it is only a tempary setback. At first I was thinking "ok, I guess I will not be going out to eat in public anymore and confine myself to soft food and protein shakes for the rest of my life.'" But thinking about it more in depth and experiencing it brought up more serious issues. First off the problem is I am unable to fully close my mouth or smil with my lips closed. Thias causes my mouth to dry out and become parched very rapidly. As result, my speech is hindered and becomes slurred as my lips start to smack together from the dryness. Once this happens, it is very difficult to drink again only thru a straw. I have to play arounde with positioning just right so I am sucking in liquid and not air at the same time causing liquuid entering my lungs and choking me. It has caused a few complications with taking the meds but I have gotten better at strategizing. My biggest concern of course is how I would scuba dive and if I still be able to breath off a regulator safely without water pe3rforating in my lungs,

So tomorrow I DEFINITELY need to meet with the speech therapist and learn some exercises to tery and build up my facial function again. I was a little discouraged to not get a visit today so I tried to remember aome of the exercisesa from 2 years ago. I spent a good portion of the evening stretchinmg out and emia in hoplaying with my mouth and tongue. I cannot even pucker a kiss sadly. So please saend prayers and healing vibes my way that my facial function will recover.

Thanks for all your love, prayers, and support so far. Know that your actions have paved the way for miaculous things! It is amazing how quickly my recovery is moving along from this surgery. I have absolutely no doubts I will be racing up the columbia tower in march in the big climb for leukemia in honor of my friend skip whoo passed away a week ago from acute leukemia.

Antsy in her Pantsy

Becky is awake and talking this morning with a very good first night post-surgery behind her. She had very little nausea (and didn't throw up at all, just dry heaves) and was able to sleep on and off through the night with some major pain around 4 AM because she waited too long to ask for more meds. This is great news compared to her terrible sickness from the anesthesia last time. Big happenings today though! If there is a bed available, she'll be out of the ICU later today, will have a Physical Therapy session this afternoon, and should be able to eat something (she's hungry after not eating for a day and a half so far! Last time she had to wait two days because she was so sick.) The swelling seems to be causing a little bit of facial numbness for her, but we were told her facial nerve wasn't damaged at all in the surgery, so we expect that to go away. The main thing she told me is that she's anxious to get up and walk around!! She is not one to lie in bed unless she's sleeping, so it will be difficult for her to stay in bed and rest. Today's physical therapy should help get her moving and tire her out. More to come later! Thanks for reading and keeping Beck in your thoughts:-)

Still Going Strong!

Michelle here with another update: We were all able to spend some time with Becky while she was resting in the ICU and she is doing wonderfully. At first, she said it felt like someone kicked her in the head, but after a couple doses of morphine she started telling stories to the nurse ("I went diving in Cozumel and rubbed up against some coral that gave me a rash. Then I went to the National Institutes of Health for a study and they thought I had Swine Flu!") She passed all of the neurological tests with flying colors (wiggle your toes, stick out your tongue, etc.) and was already asking me when we are going to go snowshoeing this winter and talking about dive spots she wants to visit in California. Seems like she's already put this surgery behind her:-) Now she's finally asleep (after dosing off several times only to wake up a few minutes later to remind me to do something like plug in her phone or make sure to zip the camera case so the extra batteries don't fall out - she's always thinking of something!). It looks like she'll be out of the Intensive Care Unit tomorrow and into a regular hospital room! Stay tuned for more details, but things are going great so far!

Success!

Update: Thank you all for your prayers! Becky came out of surgery at about 7:30PM, so only 3 1/2 hours of surgery this time! According to hourly updates phoned in to her mom who waited patiently in the waiting room all day and evening, everything went smoothly and they were able to remove four tumors... one large one and three smaller ones. Meanwhile, her trigeminal (facial) nerve was left intact. During her last surgery it was stretched when trying to get to the tumors and that required Becky to do many facial exercises afterward to return the funtion and feeling in that area. She'll go now to get a CT scan then into recovery for a couple hours. After that, we'll get to see her in Intensive Care. I'll bring you more when there is something to report, but the bottom line is things went wonderfully and we are so thankful for her wonderful team of doctors who have been great both times! Now it's up to Becky to recover and we all know she can:-) Thanks for checking in!

Headed Into Surgery

Quick update from Becky's family for those of you who track her blog... she was just rolled into surgery and everything has gone smoothly so far! Beck was very relaxed and ready; it seems the process has gone a lot faster this time around (two years ago we arrived in the early AM and she didn't go into surgery until the afternoon, this time it was only a few hours and she was wheeled away.) She had a chance to speak with the anesthesiologist and made sure to remind him to do a good job (just in case he had forgotten:-)) Now we wait. Stay tuned! We'll try to give updates as they call us in the waiting room. Thanks for all of your thoughts and prayers, it is so important and incredibly helpful for her state of mind! It's great to know Beck has so many friends and supporters!

The Beach

The ocean is one of my passions and the last stop I needed for surgery. Friday afternoon we left arriving late in the evening. Once we entered the beach house, RELAXATION TIME started. Harley immediately crashed right on the couch literally wihtin 5 minutes while I occupied my time with my text phone and reading a book.

Sunday I felt the urge to get out for one of my last runs before surgery. I had no set destination, no watch or time contraints, and no planned route or distance. I just started running, making my way from the beach into the small town of Pacific City along the country highway.

"Where shall I go?" I pondered. I enjoyed running through the quaint little seaside town and was enticed by the farm field inhabited by milk cows with rolling hill vistas in the background. So I just kept running until I saw another bridge crossing the river slough.

It was interesting to observe all the quaint little shingled cottages comprising of the residential area. As I ran past along the rural road, the landscape alternated between trees and open fields. Instead of heading back, I decided to just keep going until I came upon another beach.

When I finally reach the coast where the road came to a T, I stopped and wandered over scree and a gully perching myself upon the sandy cliff overlooking the ocean. I sat mezmorized for a long while by the hyponotic movement of the ocean waves. It was a moment and the first of which in the past week, where I felt no saddness but only joy. I did not feel scared, nor greif or anxiety. While the sun wamed me in the gentle breeze, I could only feel a deep love for the ocean abd life. I finally found the peace that I had been in search of for so many months. I wanted to bottle up the feeling, preserve it and bring it to my surgery unleashing it at just the right time when fear and panic begin to emerge.

When I felt content that I had my fill, I got up to made my way back over the rock and through the brush to the highway. The sign pointing in a direction different than I cam read 3 miles back to Pacific City. The route was a perfect destination to finish off my exploration.

As I ran down the Oregon scenic highway, I approached a crosswalk leading to a hiking trails into the woods that appeared to head towards the beach. Curious and further wetting my appetite for adventure, I followed the trail. Sure enough it led down to the water and beach. There I climbed up on some black molten rocks to sit and admire the ocean beauty some more.

In the distance I could see Cape Kiwanda to the south. The beach between was wide and expansive with compact sand unlike the other side of the Cape. Therefore, I ran all the way back to the Cape along the beach dodging shallow little passages of water trickling from the cliffs to the ocean.

When I reached the giant dune, I climbed up its backside resting upon the steep ridge overlooking the surfer beach and haystack rock on the other side.

For a while I stretched and then I layed back into the sand looking up at the clouds. For quite some time I sat alone on my huge dune until a couple of families slowly made their ascent to the top. By then, it was about time for me to slide my way down in the deep sand on my heels. My stomach was starting to grumble telling me that my tanks was nearly empty! So Once I reached the bottom of the dune, I ran the last mile back to the beach house passing all the beach cottages dotting the coastline.

It is moments in time like these, that my suffering brings a deeper meaning and appreciation for life. If you look hard anough and seek it, life is good.

Driven

Although it has been an emotional last couple weeks, I have kept up with my training never faltering. My regimen included a weekly session with a personal trainer working on balance, focus and core, 3 days of strength training a week, weekly water aerobics, at least 10 miles of running a week (3 days of running), and doing exercises on my own time that my trainer taught me. Obviously, I take preparation for surgery very seriously. My goal is to go in as strong as possible to give myself a fighting chance and hopefully bounce back quickly in recovery. I also need the strength to tolerate getting through the surgery, waking up from it, and getting back on my feet after a week of lying in the hospital followed by a month away from the gym. In a state like that with NF2, muscle weakens fast and balance deteriorates rapidly. My pursuit is to hold on to my present quality of life for as long as possible. If I can actually improve/enhance it physically, well that is just tremendously phenomenal!

There was no holding back my last 2 evenings at the gym Thusday and Friday. I met with my trainer a final time on Thursday, walked the dogs for an hour, and then came back to the gym for my strength training on my legs. I did not go light on the weights at all and if anything I added another 5 lbs more than what I normally do to many of the exercises.

There was something about the feeling of finality that drove me to make it count - my last big effort before surgery. It felt sort of odd like I was going away on a long vacation or leaving a job to move on. I really did not want to leave and if it were not for the constraints of time, I probably would have stayed until I completely exhausted myself.

As I mentioned in a previous post, a friend very dear to me passed away last week from leukemia. I was pretty crushed but I finally came to realize that the best way to honor him is for me to continue being Rebecca and to carry/pass on his goodness. For me to accomplish that with NF2, is to keep myself as healthy and as strong as possible in order to have the stamina to do as much as possible. A very important first step toward that mission is to be in an optimum condition mentally as well as physically.

When I got out for my first run of the week Tuesday evening, I thought of Skip and remembered when we met as teammates training to walk the full Seattle marathon in 2006 for the Leukemia and Lymphoma Society. He had just been diagnosed with leukemia and I was astounded that he planned to continue with the training while he went through chemo. He was in his 60s, and I could not even imagine myself doing something like that when I went through chemo at age 21! I admired his tenacity and spirit.

I reminisced of the good times we had training visualizing all the pictures I had gone through on my computer the night before. The day of the marathon he exuded such strength. I reflected on how challenging the training and feat must have been for him. Still, he pressed on and accomplished his mission. I also thought about how difficult the summer had been for him in and out of the hospital continuously and the increasing uncertainty of life. Although he was pretty weakened one of the last times I saw him a few weeks earlier, he never stopped being Skip and the true person he was.

Thinking of all these things, I was inspired to keep running. I recalled how after my first surgery, I wanted to work up to running a 10k and I wanted to do it by the end of the summer 2008. I was not sure if I could. Maybe a month or 2 after surgery, 10-15 minutes wore me out. By June, I had worked up to running a 5K and ran 2 5K events that month one week apart. The possibility of a 10K however, eluded me. I had made it to 5 miles. When I told Skip, he believed I had the ability to run a 10k which was only 1.2 miles further than 5. You know what? A week or 2 after he told me that, I went out and did it!

So I kept running determined to run a 10K in his memory. It had been since May that I ran that kind of distance. But when thinking about my friend and all he went through, the 10K all of a sudden seemed pretty easy in comparison. Funny how my friend was motivating me even from the afterlife to keep pushing before my surgery.

The pictures shown -

This is a great exercise my trainer and I did that involved multitasking, visual focus and coordination. I had just completed a fast 10 minute run to warm up and this was a good exercise to start out with as my double vision occurs after that length of time and intensity of running.

How it works is the 4 medicine balls of varying weights are arranged on one side of the mat. I pick up each ball and pass it to him like you would pass a basketball on the court. The medicine balls weigh anywhere from 2 to 10 lbs making some harder to throw and some unexpectedly easy. Therefore, you need to also pay attention to the intensity in which you throw the ball.

So I pass each of these balls to him and shuffle to the side for the next. When finished, we quickly exchange sides of the mat and repeat the exercise. It wears you out pretty fast! When I get tired I still need to keep form by bending my knees into a squat instead of bending at the waist to pick up the ball. The shuffling to the side is challlenging with my balance and as we progess, I start to slow down. I like this exercise because it is working on so many different things at the same time. Not only is it physically conditioning me, but also building new brain pathways and practicing vision therapy.

Well I have done all I can do physically - ran the past 3 days in a row. Now is the mental preparation that I am presently doing at the beach on the Oregon coast. It is working and I am SO GLAD we took the opportunity to do this last preparation. THANK YOU Christie and Dave Hammond for inviting us to stay at your beach house before the surgery! We LOVE it here! Harley and I are getting in some much needed relaxation. It really helps put things into perspective and to rejuvinate the soul with positivity.

I have done all that I can do. My fate is in the hands of the surgeons and God now.

2 more days to get my frame of mind together.

The Grand Finale

Before surgery, I just HAD to get in one more hike. During most of September I worked on house projects I wanted to complete before going to the hospital. Thus, I stayed behind on one hike in the Mt Rainier surrounding area because I had planned to go with the TSNW group on a season finale at Rainier. However, the day that we were supposed to go, there was a snow forecast at the 6000 foot level where we would be. As such, the trip was canceled and I felt rather heart broken. The season and my desires felt incomplete.

After I had hiked to the popular summit of Mt Si 3 times on my own, I felt a deep longing to also stand on the rock peak known as the "haystack" where I saw little specs representing people. I really like to push and once I begin hiking a mountain, I want to keep going to reach the top (Rainier is obviously an exception because one must be a mountaineer rigged with the proper gear and posess advanced skill).

But anyhow, I longed to be up there like the other people I saw. I had been to the topof the haystack 2 or 3 times before, but it was many years ago. The questions if I could do it again, burned in my mind. However, it would be something I could not pursue alone for both safety and also for guidance. The last leg to the haystack is not a hike, but scramlbing and climbing are involved.

I was simply delighted to finally find someone interested in climbing it with me and who was available on my last weekend home before surgery.

Curious as my trainer is in excellent physical conditioning, I asked "Do you hike?" "Yeah I hike." he responded back. "Wanna go this weekend?"

I was thrilled and estatic that somebody experienced and with endurance was going to have the patience to hike with me on a challenging route! It was a dream come true and my final wish to complete before I went to surgery. Bonus - It turned out to be the best fall day too! The weather and color were gorgeous and no rain, very few clouds.

Click here to view the photos and my descriptions of the hike.

Again, thank you Paul for coming with me and being patient over the rough terrain and climbing the rocks. Thanks for not holding me back either and letting me challenge myself. It is completely what I needed and the mindset I sought to achieve this week. For if I can climb to the top of that rock face with all the focus and concentration, I can also bear with it and tough out facing/going through with the surgery - that includes the sickness that comes afterward in recovery.