Produce the Doctors - Please vote for my idea

I just learned of the show and the NF2 community wanting to get a program about NF2 so we can spread awareness. We want to stress our need for support for NF2 research as there is no cure. As a result, some die and some suffer devastating side effects which severely affect their quality of life. I can imagine I make living with NF2 look quite easy with all the activities I engage in. In reality, it is not that simple for many.

Thus, in addition to writing on this blog, I have further decided to expose myself for the benefit of the NF2 cause by offering the documentation of my surgery. My idea for a show that I submitted is "Undergoing a Major Brain Surgery". In order to be considered, I need as many people as possible to visit the following website and vote for my idea. You need to hurry however as my surgery is October 21st. For those of you who live afar and really wish there was something you could do to help with the upcoming surgery, this is the perfect opportunity. This is what I really want. I want you to support whatever I am doing in regards to NF2 in whatever way you can. Voting costs you absolutely nothing and will take less than a minute of your time. Now how easy is that?
Here is the link to visit and vote:

http://www.thedoctorstv.com

Here is the idea that I submitted:


Hello! I am about to undergo a second major brain surgery for a tumor severely compressing my brainstem. These tumors are the hallmark of a condition known as NF2 - Neurofibromatosis Type II. Sooner or later all of us need to get the same kind of surgery and some need the surgery several times as there is no cure currently for NF2. Thus, the tumors grow back - some sooner than others.
These tumors have caused me to become completely deafened, impaired my vision, and stolen my balance function. The surgery is to save my life and preserve my present quality of life if possible. Even with such devastating side effects, I am doing quite well compared to others who have suffered from this disorder.
My surgery is coming up fast! If you miss it, there are always others of us checking in and out of the hospital for brain surgery (and spine surgery). I can't keep track who is going in for surgery as it is that many.
One may follow my progess and the days leading up to my surgery on my blog at www.diverbeck.blogspot.com

Thank you sincerely for your help!

Signing my life away - Preop

Cheers! Post appointment wind down





Out to dinner with my dad and the Hammonds (Dave and Christie) after the appointment

P.S. - Thanks Dave & Christie for opening your home to us and letting us stay with you while in Portland! It was nice to have a home to go to that evening!


Last Thursday we traveled down to Portland (3 and a half hour drive) for my "preop" appointment.

What is "preop"?

Well I was not even quite sure myself. Last time I had surgery in 2007, my preop was less than a week from my surgery. The surgery was bumped up because I took a downturn by an unanticipated onset of painful trigeminal neuralgia (random shocks of face pain described as suicidal on the TNN website). I had a reaction to the medication to allieviate it and became horribly ill. So I was given steroids to lessen the pain of each random episode. As a result of medication, shock, pain, and anxiousness, I have no memory about what exactly preop was about.

So it was equally my best guess as it is yours.

We arrived and a resident doctor met with us to have me sign a legal document saying I consent to the procedure, what the team will be doing, that I understand the procedure, and finally accept the risks involved.

That was all fine and dandy but the WRONG surgeon was listed and the procedure/surgery not entirely accurate! Oh Lordy! LOL That sure did not reassure me! So being freaked about the major error which I was assured was "just a typo", there was no way I was going to sign the form.

Therefore, due to legal requirements, we had to come back the next day when issues were verified/answered and the form corrected. It turned out alright though as on Friday we were able to meet with one of the surgeons on the team who assisted in my previous surgery. It was GREAT because we learned a few things we did not know (did not even know he was on the team and that there are 3 surgeons present and taking part in the operation). It was also great to talk to the source and a specialist who has actually "been there" and will be involved with the upcoming surgery. That way there is no guessing or "I do not know" answers. You get the facts straight up. Sometimes those can be hard to swallow but also you then know what you need to mentally and physcially prepare yourself for.

So PREOP is the last chance to ask any burning questions, to make sure it is fully understood what will be taking place, and to have the potential risks explained to you so that it is understood what they are should any happen. Once this is reviewed, talked about, understood and accepted, you make the decision if you are going to "dive in" and put your faith in the team. Literally you decide to to put your life in their hands by "signing your life away". It is te final committment and "go ahead" to the surgery.

I have to admit that I felt sick Friday morning (nauseous) with a bad headache that lingered throughout the day intensifying before bedtime. In addition, I had a dull but mild pain running from my ear to the underside of my jaw freaking me out that at any moment I could have the onset of trigeminal nerve pain again. Thus, my feeling was "let's get the darn thing out of there before it kills me!", even if death is a risk of the surgery. At this point, it is the only chance I have. If I continue to go on with it inside my head, I risk disasterous and catastrophic side effects worse than dying. I have accepted that and know I need a surgery. The rest is all details regarding my choice of experts I put my trust in and my confidence in the specific procedure of how they propose to remove the tumor and how much of it to remove.

Therefore, as long as the proper surgeon was listed and the details on the form more specific, I was ready to sign. It was an unexpected and welcome treat that we were able to meet with one of the surgeons on the team. Seeing this wonderful opportunity to have a better insight, we grilled him with questions covering all bases. Due to this spontaneous meeting, I was unable to have a captioner so he was fantastic in writing to me and even drawng pictures. We took up the maximum amount of time he had and he told me I could take the form and look it over but I had already thoroughly reviewed it in the pauses when he was writing. I was ready to sign and so I did!

The surgery and approach

The surgery will be a left obccipital craniotomy for debulking of the left cerebello-pontine tumor (the large vestibular schwannoma on my acoustic nerve) via the retrosigmoid approach. A debulking is when they remove as much of the tumor as they feel is safe, with the attempt not to damage any important structures such as the brainstem. How they do this is to open up the tumor and such out the insides such as taking out the insie of an orange. I also have an additional tumor which has merged with the larger one. They will try to remove that one entirely if they can. It depends on what they see when they get in there and if they can avoid damaging any nerves by the removal.

For the approach, a large C shape incision is made surrounding the entire ear. Then the cerebellum is lifted in order to access the tumors.

The surgery will take 6-12 hours. Again, it depends on the situation once they get in. The tumor is not round but more oddly shaped like an ameoba and has grown into the auditory canal. Best case is 6 hours.

The risks

Bleeding, infection, headache, difficulty swallowing, visual deficits, facial weakness, extremity weakness, need for additional surgery, consitpation, reaction to the anesthesia, stroke, coma, and death.

We also talked about what would happen if the brainstem became damaged. I asked for it straight up so I know what I am up against. He told me that brainstem damage could cause inability to walk or breath(meaning I would be on a ventilator). LOL My reaction was a sarcastic "Oh GREAT!" It just naturally flew out of my mouth as if it were a normal part of conversation. After that he emphatically wrote "But we will do everything in our power to prevent that."

And I definately believe him and that is why I chose this team. With that, I signed my life away.

Reaching a Goal

Hike #20 of the season - Mt. Pilchuk in the WA Cascade Mountains

First 2 photos taken by TSNW hike leader Connie Anderson and photo 3 taken by TSNW hiking friend Lori Mitchell
If you look closely or click on the first photo to enlarge it, you can see Mt. Baker in the background.

After I returned from our vacation and the NIH trip in late August, I reached my hiking goal of the season in early September by hiking up the challenging rocky talus fields of Mt. Pilchuk.

I was incredibly excited as I have never been on this hike and the terrain is not something I could have handled over the last 5 years. It was the most difficult I have managed throughout the season but that made the hike all the more sweeter. As I climbed up the mountain, I began to feel more and more invigorated to acheive this task and reach the top. It felt miraculous and every breath I took was a reminder that I am alive!

You see, hiking for me is a complete physical release, outstacle to overcome, and a game play of the mind. For me, hiking is like playing chess for other people. Especially on a hike like this one where I have to cross countless rock slopes. I have to constantly be thinking of where to safely place my poles and where I should take the next step all while shifting my balance and using my arms to keep me from falling.

I am sure some of the younger crowd or advanced mountaineers have passed me thinking "What is that idiot doing up here? This is way out of her league."

What they don't know is my story, what I have been through, what I have yet to face, and what the hike means to me. On a hike near Mt. Rainier I told my friend Elaine, "No matter how ridiculous I look and how difficult of a time it looks like I am having, it is really nothing compared to facing a brain surgery." I enjoy the challenge and it drives my soul. I feel life when I am in the mountains.

The mental grit and perseverance it takes for me to struggle my way to the mountain top, is the same kind of tough skin and courage that it takes to accept a surgery, know the tough road in store, and to hang in there.

I relate NF2 and my surgery to an elevation hike in the mountains. Some hikes are long. I do not mind. The elevation gain is a joy but can really beat on you depending on how much the gain is and what altitude you start and stop at. What really hammers me is the terrain which involves all my muscles, stamina, and mental focus. The route up is just like the road going through surgery. At times you question yourself but you know if you hang in there you are going to make it. You can envision what it is like at the summit and the reward when you get there. That is recovery. What I finally reached this summer. It was fantastic! It is hard not to want to just stay there and freeze time, just like being at the top of a mountain. However, you know at some time you have to go back down and go over the terrain again. With NF2, you know that one recovery is not the end. You will need to cross the path again for there will be other mountains to climb. I have gone through the ups and downs of radiosurgery and brain surgery. It was a very good summer - one you never want to end. But now it is time to face another mountain in the hope of reaching another summit.

Tis Time!

Exactly one month from today is my brain surgery. For many years the thought absolutely terrified me. Before my first open brain surgery in 2007, I was extremely anxious the entire summer and suffered agonizing turmoil. I felt the dread of when you know there is that big final exam coming up you are unsure about and carries so much weight that your performance could be the difference between passing/failing or an entire letter grade. Further, my stomach churned the way a person experiences jumping out of a plane for the first time with a fear of heights.

I do not feel any of those things now. In fact, for the most part, I have let it go all summer and thoroughly enjoyed the disconnection. It was as if I took a vacation from the reality of having surgery. I knew it was coming, but I put it off.

Since spring, I struggled to get my head "in the game". At my last check up where I will have surgery, the half marathon was in a week so my focus was on that. I could not entirely wrap my brain around a surgery and said that I could not make any surgery decisions at that time.

When I finally did think about it and decide that the last week of August would be a good time, I learned of the NF2 study at the NIH and applied. So we delayed the surgery keeping a September date in mind. I never committed to a date because secretly I hoped at the NIH they would find me some kind of miraculous wonder that did not need the surgery afterall.

At my NIH visit, I still had a hard time getting into "medical mode" as we just returned from a fantasy dive vacation. I was still exhilirated from the whole experience and exhausted by the 3 hour time change, getting up very early every day (3 in the morning Pacific time), the 30 dives we completed in 10 days, and jet lag from traveling from Mexico to Seattle and then Seattle to Maryland. Further, we came down with food poisoning in Maryland and I, a delayed allergic reaction to accidental contact with coral. Because of the illness/coral contact reaction, there was a scare that I may have swine flu on the important appointment day. Therefore, my appointment where I would ask questions about the tumors/my situation was severely delayed while infectious disease investigated everything I had done, where I had been, and how I was feeling. When I finally had my real appointment, it was condensed into a half hour and rushed so that we could try to catch our plane in DC.

Now the reality has sunk in and a solid date set. At this point, I really feel I need this surgery. I held out for many years while it continued to grow waiting for alternative solutions to present themselves. I am out of time. I tried the radiosurgery in 2004 for the larger tumor on the opposite side of the brainstem. It did not work out as I had hoped and caused many unexpected problems that only occur in a tiny minority. I tried the propolis and its effectiveness cannot be determined at this time and it merely is intended to stop tumor growth and not shrink them. As far as clinical trials available, the tumor is at a size and critical location where I just cannot play around with the time it would take for a response to the drugs.

So here I am. I am out of options. The issue is that we again need to relieve the pressure being exerted on the brainstem. My brainstem is nearly horizontal now where it was being nearly pinched off by the tumors on either side in 2007. What happened is that a tumor I did not expect to grow grew and merged with the larger tumor forming one big tumor.

Ok back to "tis time". Last week we unexpectedly lost a young man is his 20s with NF2. He did in his sleep. Another guy responded that the same thing happened to his sister. She was in her 30s and had a brain aneurysm in her sleep. It was concluded that too much pressure built up in her brain.

After learning that, I am anxious to get the dang thing out of my head and hoping I will hold until the surgery in October. I have been having lots of headaches and intermittent spotting of numbness on my lips. I also feel dizzy and nauseous sometimes and some days the double vision is extremely distracting. I was running out of the medication I take for my nystagmus (eye problem) so I sort of stopped taking it to reserve it for any hiking days left or days I need balance. It seems I have become dependent on it as symptoms returned and I got sick from what was probably a drug withdrawal. Therefore I am back on it again and will taper off before surgery. I am really hoping that once we get the pressure out of my head, things will improve.

So the count down is on! Today is the last day of summer and marks 1 month to the day of my surgery. I have begun over the past couple of weeks to work on some major projects in the hope that I will finish before surgery. I will be making 3 trips to Oregon before the surgery (Pre-op appointment is this Thursday in Portland). That leaves me with only 19 working days. Between today and tomorrow (my birthday), I hope to accomplish my interior painting project on the main floor of the house.

I feel ready but nervous. I am nervous about having enough time to finish everything by the surgery date. I am trying to knock out tasks and cleaning so I can come home and relax during recovery in a nice environment. I do not want to have the worry of things left to do hanging over my head and causing any stress. I relate the nervousness to planning for a wedding in the final month. Time flies by quickly and you hope that there are enough days to get everything done so that things will go smoothly without a hitch.

In Search of Peace

As I keep tallying all the things I need/want to get done prior to the surgery date, the stress has begun to build leaving me more and more unsettled. Perhaps it is just the reality that I have chose to evade all summer. Now it is staring me square in the face while the countdown to surgery has begun.

Yesterday I scurried around the house like a chicken with my head cut off with little sense of direction. I start on one thing, then get distracted by another thing that screams out to me that needs to be done. As a result, I get distracted losing my focus and forgetting about the original task. Then I remember it, return to it, and get distracted by another.

As this was going on, my addiction to checking my email several times a day (it happens when you main mode of communication occurs in the cyberworld) kept interupting me. My surgeon's assistant emailed me to confirm the new surgery date as I had not gotten back with her to agree.

The new date is not a typical surgery day so I wanted to verify that an anesthesiologist has been scheduled. What is more frightening to me than going through an actual brain surgery is doing one while awake! and yes, that is a procedure for some conditions - fortunately not mine. She was not sure but tried to assure me that my surgeon likes to work with certain anesthesiologists. That did not provide me any relief. I wanted to know for certain that everything for the surgery is in place and nothing forgotten seeing as my surgery day is on a special non-surgery day when both surgeons are available. The popularity of my doctors has them booked up for the next couple month. The earliest I could get in on a "surgery day" would be November!

Thinking of anesthesiologists, I recollected the past nightmare reaction I had to the anesthesia upon waking. It has been a concern of mine since the last surgery 2 years ago. I had wanted to know if it is possible for me to try a different anesthesia so I do not get sick this time. I have not gotten an answer yet although I keep bringing it up. I am worried my concern will be forgotten and I will have to go through the same thing again unnecessarily which was really mentally tough.

The final blow to later put me at unease, was the info that my surgeon will be coming from a different clinic prior to my surgery. It sounded like he will be in a different town the morning of my surgery and then be hurrying back to catch my BRAIN SURGERY. (this is my interpretation of the comment, not fact). When I had time to think about it, all that ran through my mind is the fatigue I get after a 45 min to hour long drive and the need to relax afterward. I could not imagine conducting a brain surgery after travel. What if there is traffic which makes the drive even more exhausting? Will total focus be on my working on my brain? Is this the right day for my surgery afterall?

I tried to relax by taking my dogs for their walk out in the farm valley on a beautiful and sunny fall evening. As I drove to the trail, I did not become less stressed but more tightly wound the more I thought about it. By the time I had made the 10-15 minute drive I was already in tears. I tried to keep my cool before my radiosurgery in 2004 but in doing so, it left my unprepared for what was going to happen. Many people told me it was going to be a breeze and I believed it would be. Unfortunately, it was not such a cake walk afterward. Am I letting my guard down again? Should I be speaking up more? Am I being assertive enough on my concerns/worries/needs?

I felt so ill that the thought of going for a walk was totally unappealing although the surroundings were absolutely perfect. I started bauling as I slowly dragged my feet a step at a time. I had all I could do to keep my legs moving so that I would not curl up in a ball on the ground and go "fetal". However, knowing that it was my responsibility to take the dogs for their walk and what was fair to them, I pressed on forcing myself to push forward. It was 10 minutes into the walk before I could even smell the sweet aroma of fresh air mixed with cut hay and sweet corn.

The first 3/4 of a mile, it was incredibly difficult to enjoy the evening and my mind was overrun with dread. I felt trapped and no idea what to do. I thought to myself I have to find a way to get out of this funk. I desperately pleaded with God to help me find a way to relax, trust in the skill/decisions of my medical team, and have faith that I have the strength to get through whatever outcome.

I tried to remind and recite to myself the quote "Worry does not rob tomorrow of its sorry, but empties today of its joy." Then I looked at my dogs excitedly prancing around in the evening sunshine and the few leaves that have already fallen from the trees. I thought of how I need to enjoy them and these moments as they are a brief and rare treasure which we will not have that much longer as they just turned 8 last month.

Still, I had trouble focusing. Knowing that, I fought a bitter battle in my mind between my apprehension and the knowledge of the here and now. I had to keep repeating the words to myself so that it would sink in and kept praying for God to help me find some way to relax. Normally being outdoors and going for a walk does it for me but this time it was not happening.

It took me over half the walk before a calm and peace surrounded me. All of a sudden the reflection of the sun on the early autumn. late summer leaves on the trees overhead burst forth in equisuite vibrancy! Everything took on an orangish hue lighting up Jake's marmalade coat and Katie's blonde patches and beautiful visual splendor!

I had found the moment I sought, asked, and prayed for! I had found the joy of life and the peace.

As I neared the last quarter mile, the western siloette of Mt. Rainier turned a rosy pink from the setting sun. I inhaled the breath of life filled with fresh country air. Birds playfully danced over the glowing tops of the fields of corn flooded in the crimson sunset. Overhead, whisps of white coulds now a peachy pink, gleaned in the pastel blue sky. I was living in the moment with all its grandeur! I was finally relaxed and ready to brave through the days ahead.

Surgery Psychology 101

Wild dreams have begun!

Last night I was a mountain climber scaling the snowy peaks of South America. Next, I learned the bizarre tale of my neighbor's dogs having their own fridge stocked with giant rectangular pizzas and cans of beer for when their owners are away. To my astonishment, the dogs knew how to open the fridge to access their pizzas on the bottom shelf and crack open a brew when thirsty!

Those dreams were pretty cool. But this evening's was not such a joy, although it did have a moment of lightheartedness. I was in the hospital for my 2nd surgery and filled with anxiety once again. Last time, I had to be at the hospital by 6 am but my surgery did not happen until the afternoon. So this time I was told to check in at noon but I forgot to tell everyone. For whatever reason, I showed up early anyhow and then felt bad when everyone else did too.

In the preparation hours beforehand, it was darn IV time again! (I hate IV time!). But it was worse than just IV time. Feeding tubes the thickness of a pencil had to be shoved in my arm and leg! It was disgusting and worse than getting an IV! They had to feed me this way before the surgery as last time I got horribly ill from the anesthesia and could not eat for a few days without violently vometing.

Just when the horror got started, there was room for comic relief and a most ridiculous one at that. While this feeding tube drama was going on, all of a sudden something in the distance caught my brother's undivided attention as if he had seen God himself in the flesh! Then everyone in the hospital rushed over to the windows to witness the same scene. "What the heck are they looking at?" I wondered.

Then I saw it. A man was running through the lobby with a surprise ice cream came in the shape of an upside down ice cream cone. How bizarre that all these people would be attracted to something so trivial at such a time. The history of my brother is that he has ALWAYS loved birthday cakes and especially ice cream ones! So I could sort of understand his fascination. But what about all the other people?

So what does all this mean?......well, a bunch of things in my mind all jumbled up together while I try to hold back the stress.

The past 2 books I have been reading are about incredible mountain climbers who have persevered. I have long had an admiration for climbers and dreamed of being one.
Today I began having some serious apprehension about going through the surgery again while recalling some of the unpleasantries I will have to endure. Over the past couple of days, the reality of the surgery fast approaching has set me in a bit of a panic. I am a bit worried as I have a task/project list a mile high and not enough days to accomplish it all single handedly.
Finally, my birthday is in less than 2 weeks but really is insignificant to me with all that is going on. As I have begun to feel the pressure rise, my mother-in-law advised me to relax and think about pleasant thoughts such as what kind of birthday cake I am going to have.

Now, how do the dogs with beer and pizza fit into the equation? I have absolutely no idea! Maybe it is my mind's way of throwing in a little bit of entertainment. My dogs love pizza so why would'nt other dogs too?

What a mind trip, eh? What interesting episodes are in store for tomorrow evening?

A Summer To Remember

The pictures -

top: me standing outside our room at the Scuba Club Cozumel dive resort

Middle: Harley and I dressed for our last dinner at the resort

Bottom: Photo by Harley of me at Panorama Point via Paradise at Mt. Rainier last Monday August 30th.

I have been gone a long time...few posts. I have been busy. Where do I begin?

A greater portion of the past few months has been about obtaining goals, or rather shall I more accurately define as seizing opportunity for which I have used goals as a motivator to get me there.

That is the important thing I will stress about shooting for a goal..It forces you to take action in pursuing the life you desire. Without them, you can fall into a lazy state with yourself feeling you have all the time in the world. Then soon enough you may discover yourself 20 years down the road saying "There is always tomorrow" when you come to the reality that there are not many tomorrows anymore.

When you survive cancer, endure a terminal illness, or live a life of uncertainty, it creates a sense of urgency where you want to do everything before time runs out. Having escaped surgery last fall and the news that I was doing so great that the risk was too high to do another surgery at that point, I thoroughly looked forward to enjoying 2009 and the NW hiking season in particular. I was so elated and confident, that I conjured up the courage and strength to train to RUN (not walk) a half marathon in May to raise research funding and awareness for NF2.

Although the hiking season began in April, I held it off until after the marathon event as I did not want to jeopardize my ability to complete the event for which sponsors and patients were counting on me. I also did the same last summer when I trained to walk a long distance trail in September 2008 for the same reason. So with the 31.5 walk and half marathon out of the way along with the stresses of fundraising, I was looking very forward to time off from everything to just enjoy my passions of hiking and diving the summer away. Due to the all the periods of illness and the side effect of damage to my vestibular system following radiosurgery in 2004, I was not able to fully partake in these activies until this year. Therefore, it was even more significant that I "seize the day".

During my March followup MRIs the news was not good. After reading the report for the first time in the office before seeing my radiation oncologist, I swallowed hard and tried to hold back the tears when the words "growth" and "increase" popped out at me. I did not want to scare my husband Harley who had yet to see the report. So I just became quiet and tried my best to smile hiding the fear behind the lenses of my eyes. After 14 years together however, I am not so successful at hiding things. I really could not speak so when he sensed my panic asking what was wrong, I summoned up a smile and barked in a weakly crackly perhaps high pitched voice "Nothing".

When moments of panic like that set in, I try really hard to push it deep down and focus on something else. That is the way I survive and get through what I have to get through. Otherwise, fear would paralyze my mind throwing me into a deep pit of depression and anxiety.

I scour my reports and like to be on top of everything. With a medical situation as complex as mine, I don't want anything to be overlooked. Understandbly, that is why I was reading the report before the doctor came in. I request and demand it. Seeing I have to multitask with reading captioning and looking at images at the same time (which is no easy feat let alone comprehending it), I like to review the report first so I can be armed and prepared with my questions. In this case, the growth was sort of overlooked until I brought up and questioned the statements containing "growth" and increase". So then we consulted the film images on the computer for a confirmation on the measurements. (You have to understand, I have so many tumors that it is complicated to get a precise measurement and keep track of them all. I am an unusual case in the realm of brain tumor patients typically seen - not NF2 patients however).

As I had worried, there was indeed growth that we dicovered on the images. A tumor we thought would remain stable had actually grown and fused with the larger more critical tumor. Once again, there is significant compression on my brainstem by the 2 tumors.

When all this is going on, I have to put on another hat and step out of the emotional role as patient and instead approach the situation as a med student learning of a case or a parnter trying to solve some sort of important problem. It is not easy to do this but I think for the entire year if I am remembering correctly, I held it together and did not break down in the doctor office (3 visits with 3 different specialists on both east and west coasts). Everyone is in agreement that surgery is the recommended course of action (including specialists in LA and Stanford).

My appointment with my neurosurgeon was April the week before the Eugene marathon. I could not even comprehend the seriousness of a brain surgery let alone get into the medical frame of mind. So unlike me, there was no long list of questions I prepared or really any dwelling I did about the growing tumors. My focus was more on my major upcoming athletic feat and meeting my fundraising goal of $5000 which I increased to $6000 once I attained my goal by the end of the week.

Partly because I got away without needing a surgery in the fall, we questioned whether I really needed one now. Afterall, I was in the best athletic shape of my life and about to run a half marathon which is 13.1 miles! It is by far the furthest I had ever run! My surgeon said the situation was now getting "scary" as the tumors were on the move. He wanted to address it while I am healthy and not wait until I am "sick".

I just could not bare the idea of blowing my whole summer on a recovery and missing the hiking season while I pined away waiting to get better. I already know what that is like from summer 2004. I also was anxious to get back to diving that I had restarted last September. I was basically tired of putting my life on hold so many times - mono, cancer, school, more school, radiosurgery, brain surgery, etc. - when does it end?! I did not want to wait again to dive and hike until after another surgery. What if something went wrong and I became paralyzed or I am sent back to the drawing board with my balance (falling over just closing my eyes while standing in my kitchen). No way! Seize the moment when it presents itself and ride it out for as long as it lasts!

I remember my surgeon understanding my busy lifestyle but advising me that this matter was an important situation to address. My response was that I could not do any thinking about it or make any decisions until after the half marathon I was to run at the end of the week. In order to accomplish what I had set out to do, I needed my total focus on only that - finishing the half marathon.

On the way back from the marathon we stopped outside of Portland and met new friends Vaughn and Donna (brother and sister). Vaughn, a wonderful man in his early 40s, had overcame a horrendous ordeal with NF2 post Gamma Knife radiosurgery where he suffered a stroke and was confined to a wheelchair for a period of time. Through lots of hard work and resilience, he has amazingly regained the ability to walk with the aide of a cane.

Ultimately, I think I decided I was going to live out this summer as best I could and hold off surgery until the end of August. My encounter with Vaughn and learning of his story, I think helped me to solidifiy my decision. I do not think I even contacted my surgeon back until the end of May and suggested a late August surgery date but had not committed to scheduling one.

Putting the surgery back out of my head, I concentrated on recovering from the marathon, getting psyched up for hiking season, and finishing my fundraising. Well intentioned, friends tried encouraging me to take on another half marathon and NF fundraising endeavor in June, but I held steadfast to my commitment of a "free" summer to live my passions. I have to admit, it was sort of enticing and I did ponder it, but I also remembered my committment to Harley to do some diving and help out with other things this summer. The training and fundraising takes up a lot of my time and not only is it a personal sacrafice but it is also a sacrafice loved ones endure too in support of me. So that sealed the deal and I am completely happy with my decision.

Shortly after the half marathon, I learned from another patient with NF2 from Washington state, about a natural history study of NF2 at the National Institutes of Health outside WA DC. There had begun recruiting candidates this year so I was very eager to become part of the study hoping that they would magically find some miraculous finding which would get me out of the surgery. The rest of May consisted of coodinating my records from various institutions to be sent to the NIH. While I enjoyed the summer hiking and diving, I anxiously awaited acceptence into the study.

In January my goal was 20-30 dives for the year. After the marathon I realized the goal just could not be achieved if they were all NW dives because we only have 1 day of the week to dive and it takes so long to get prepared and get me in and out of the water, that we only end up doing one dive that 1 day. Further, summer is not actually the best time to dive in the NW and the visibility was total SH-T in June! We suited up by could not see a foot in front of us due to the worst plankton bloom I have every seen! Therefore, 2 of our dives were a botch and we just practiced on the surface instead. So with 2 weeks unable to dive in the month of June, that left us only a maximum of 9 dive days if I was going to have an August surgery. After surgery I would pretty much be out of diving for the rest of the year so we decided to take a warm water anniversary trip to Cozumel.

We have always been cold water divers and have not gone on a warm water dive vacation since our honeymoon in 2000. Therefore, instead of waiting for another year to celebrate our 10 year anniversary by going on a dive vacation, we chose to "seize the moment" now. Afterall, there are no guarantees in life and no guarantees the outcome following brain surgery. It is out of our hands. So why wait and chance blowing a perfectly good opportunity? We held off taking dive trips while I went to grad school. I finished and then look what happened? Thus, my wonderful and fabulous husband (who I also refer to as my person "Make a Wish foundation"), took me on an absolute dream vacation! We did 30 dives in 10 days, I finally got to see a sea horse, and I even pet a sea turtle about 70-80 feet down! PLUS! I went wreck diving twice and night diving almost everynight which are activities I thought I would NEVER be able to do again!

As I sat by the pool reading "Every Second Counts" by Lance Armstrong while Harley attended his photo class in the early evening, I was blessed by the most sureal visual setting. I felt like I was in a dream and the thought crossed my mind that maybe it actually was a really good dream! The only thing that kept me in reality is the fact that I cut up my knee on the coral sand a few nights prior while trying to burst open the beach party pinata. The bandaid was still covering the wound. In dreams you don't cut yourself, right?

Back to the hiking.....for years I had wanted to hike with a program for women cancer survivors. However, the day of the week in the hike season landed on Wednesday which never worked out for me....I was either working or going to school. But this year I was doing neither. Further, I was no longer sick and my improvements in balance have been the best they have been in the last 5 years. In previous summers, I would not have been able to handle the difficult and steep terrain.

After having some struggle but nailing the first hike with them which had questionable terrain, I got excited and chose to stick it out. I even made the goal in June of trying to complete 20 hikes before my surgery - 1 hike a week with the cancer survivor group and 1-2 hikes on my own on trails with easier terrain that I know well and frequented by many other people.

It has been absolutely marvelous! I have been able to visit and hike on trails I did not even know existed nor could do alone. Also, I have built up the confidence and skill to tackle two pretty strenous hikes completely solo. I have made 7 solo ascents and 2 of them required srambles over large sharp boulders to see the view at the top! What a total thrill and high it has been!

Due to delaying my surgery until the fall because of my NIH visit in August and the need to abstain from taking the propolis supplement a month prior to surgery for healing reasons, I was able to reach my 20 hike goal with the cancer survivor group last Wednesday. Unfortunately last week I strained my buttock muscle on a run which has become increasingly worse by the end of the week. Therefore, I need to ease back and give it some healing time before I try to fit in as many more hikes as I can for the rest of the season.

After rescheduling 4 times, I think we now have a firm date of Wednesday Oct 21 for my surgery at OHSU in Portland. While resting my rump, I have need to get things squared away at the house, catch up on blogging and updates, and getted my things prepared and ready for my pre-op trip to Portland this month and the surgery next month AND celebrate my birthday too! :o)

Once we got back from the NIH trip in August, we went to the DUI demo day in Tacoma to get fitted for my new DUI drysuit that I have drooled over for 13 years. All my waiting paid off though because new this year they have the pink camo material avaialble! I LOVE pink! It is going to look sweet! I will be one of 3 so far with it in the US and each of us has a different design. It will take a month to make the suit so I hope it comes in time to get a couple dives on it before the surgery. ;-)

To get some idea of what it will look like, visit the following site: DUI hot new look


Thank you to my beautiful husband Harley for providing a life with such adventures and helping to make my dreams come true! I love you dearly and am deeply grateful for your patience, support, encouragement, love, care, and more than words can define! Without you, none of this would have been possible. I thank God everyday for allowing me to be lucky enough to recieve such a blessing!

To my friends and fellow hikers with Team Survivor NW, thank you for letting me be a part of your group and helping to fulfill a dream of mine that at one time I thought was dead forever! I know it must be pretty boring, scary, and frustrating hiking with me at times and I am sure several have past by wondering what a fool like me is doing out on trails like we have gone on. This summer has meant alot to me and the times we have spent together out on the trail. It groomed me for the mental toughness it will require for me to face this surgery. Thank you for giving your time, agreeing to spend longer on a hike for me to cover the terrain, and for allowing me to challenge myself. Not only have you provided me a productive place to channel my focus and energy but have allowed me to explore an outlet that some of us with NF2 like to refer to as time "to decompress". No matter how hard a hike is for me, the mountains are my sanctuary and where I am at peace. Thank you for bringing me there so I can re-energize my soul and face the challenges ahead!