Sunday, June 28, 2009


NIH website

It is set! Over a week ago I was contacted by the NIH NF2 study research nurse I had been cooresponding with via email. She invited me to become a participant in the study and this weekend I received my packet of information and consent form delivered by FEDEX. A schedule of appointments and tests have been finalized and we will be flying out to Bethesda, Maryland on August 16th.

All I need to do now is sign my consent form to send back, confirm the flight arrangments, and get together all the records I have had since 1999 which were not sent out already - only my most recent MRI images since 2004 were reviewed. (that is quite a job as I have been seen by many specialists at several facilities. Hence, my records are housed all over the place and it is quite a bit of work to get it all organized and together.)

So what does it mean that I am in this study?

There is not a direct benefit to being part of the study and nothing magical will be going on with the hope of shriveling the tumors. This is simply my contribution to medical science in regards to understanding the nature of the disorder NF2 - how fast do tumors grow and what factors may trigger growth?

However, the benefit to me as a patient of NF2 is that there are researchers and a team within the country focused on this one disorder. I am an interesting case with many issues/side effects caused by the tumors of which are permanant. I will have medical doctors trying to determine the cause of these issues and a way to prevent them for future generations. Also, I will have a full battery of tests to understand my system as a whole done in one facility instead of all over the place. Further, it has been several years since I had some of the tests performed so it will be nice to know what my status is and to understand the progress I have made.

I will keep you posted on how the study goes.

P.S. - I have been taking the Bio Propolis 30 supplement from New Zealand for 4 months as of June 20th. By the time I have my next MRI during my visit to the NIH, it will be almost 6 months since my last MRI which revealed growth. While the Propolis is not expected to shrink tumors (at least in such a short period of time), it IS known to show tumor stability. So that is the results I am hoping to see when I go to the NIH - NO NEW GROWTH.

From there, we will see what direction I will be moving in. In my doctor visits in March and April, I was told I need another brain surgery as on the MRI we could see that a tumor near the brainstem grew significantly and merged with another one already causing significant brainstem compression.

Really it is quite amazing I am the same person as is reflected by the MRI images. The pictures of my brain look pretty scary. Instead of dwelling on that, as it can really emotionally get to you, I like to pride myself on being a medical marvel!

So let's see what news the NIH visit brings.

Thursday, June 18, 2009

Summer fun/work - I've been busy!

Here in the NW my summer started in May and I dug my heels deep down into it after a couple weeks of post marathon recovery. I have been keeping up with a weekly hike in the mountains (missed yesterday because we had an appointment to try on another drysuit down south. I am hoping to get in a hike tomorrow or Saturday at one of the local trails doable for me to hike solo.)

Since the start of June, Harley and I have been dedicating his Mondays off to go diving here in the NW. Of our 3 attempts, unfortunately we only got in one actual underwater dive as the visibility has been the worst I have ever seen (1-3 feet). We still suited up however and practiced donning our gear, entering and exiting the water, and snorkeling on the surface (which is quite a bit of work for me AND Harley who must suit up by himself as he helps me down to the water with my gear first).

I am still having a bit of a problem with my old drysuit which was made to specifications for when I was about 30 pounds heavier. As a result, my suit is HUGE and out of the water we actually need to press the air out of it. In the water, I am having continual bouyancy problems. We have been keeping an eye out for a good used suit for me but everyone either my feet do not fit and are too large, the suit is a hair too small or it is just too big. It has been frustrating to not dive in a properly fitting suit. Why don't I just got out and buy a brand new one? hehe Well it is VERY costly (over a couple grand investment for what I need). So the hunt continues!

With the nice weather comes LOTS of growth! I have been doing lots of weeding on our rural woodland property. I cannot keep up!

For nearly the past 5 years I have been unable to mow the lawn and do certain tasks in the yard. My balance is nowhere near back to normal but it is markedly improved since my utter downfall in 2005 where I lost it all. Further, the strength I have gained from weight training over the past 2 years has helped IMMENSELY allowing me to lug around heavy objects and push a wheelbarrel full of brush down the hill and back up as well as push the lawn mower in our very uneven yard. To date, I have mowed the lawn twice this summer and is the first I have done in 5 years! Trust me, our lawn is extremely challenging even for those with normal balance ability.

At the same time as all of these things, there have been repairs to problem solve, inside chores to be done, dogs to be walked (and nursed as Jake had another surgery to remove a LARGE tumor which became punctured), fitness to keep up (with hiking and diving once a week, I also do water aerobics once a week, running once or twice a week, strength training 3 days a week, and I recently started swimming laps in the pool with the new dive fins I got for christmas), researching medical options, and coordinating my medical records to be sent to the NIH.

I still have tons of cleaning to do inside this evening. I am going to skip out on the gym tonight and walk the dogs at the very least. I would really like to get in a short 30-45 minute run this evening if possible too which I think I need to do by myself because it is a little too warm for the dogs today. Katie has been having a very difficult time exercising in the heat.

Happy Thursday!

Sunday, June 14, 2009

Endless Obstacles - OVERCOME!

Last month I was featured in an article about NF2 on the front page of our local news paper the Redmond Reporter. To read the fantastic article writen by Tim Wantabee please click on the words "Redmond Reporter" below.

Redmond Reporter

The Rest of the Story - Eugene Half Marathon

I stepped off the bus about 7 or 7:02 am with the other participants frantically sprawling to the start line. We must have been dropped off about a half block to block away but I really do not recall details. I was in my own rush to get there and try to figure out where to go.

When I approached a huge mass of people gathered far behind the actual start line, I saw a man holding up a white sign with the words "10 minute or more pace starting gate" and an arrow indicating somewhere to the left. Never having run a marathon before and seeing an arrow pointing to the left of all the people, I assumed there was some kind of special entry off in yonderland where the arrow was pointing (remember that I am deaf and need to rely on visual cues).

My pace is actually faster than 10 minutes a mile but not that much faster. I did not want to start out in the mass of very fast runners doing 6 and 7 minute miles and therefore get trampled. My reasoning was that if I started at the front of the slower pack, I would stay at the front and have lots of space to myself. hehe So I quickly decided the 10 minute a mile and slower gate I go!

It was sort of strange though. All the runners (hundreds and really thousands) were inside a baracaded fence seperating me from the other participants. I was glad not to be mashed in the sardine can chute of runners. Yet at the same time, I questioned if I was going the right way. I DID follow the arrow! LOL I also saw a couple of other lost people (or so I thought) running the same way. I did not notice if they were wearing a bib number and were actual marathon participants or spectators rushing to catch a glimpse of someone they knew. At the time, I just continued on with the few other stragglers running in the direction of the starting line.

As I ran along the outside of the baracade protecting me from the massive herd of other participants, I could not find any "gate" or opening to let me in. I thought "Oh crap! I am on the wrong side." and I began to fantically search for an opening. As it turns out, there never was a "gate", chute, or whatever. I must have misinterpreted the sign and really it must have been indicating the people gathered together at the BACK of the large mass!
Not wanting to miss the race or have to turn back around, I just kept moving towards the start while looking for an opening.

Finally there was a break in the baracade about 4 strides in front of the starting line. So in desperation, I did a crazy thing which either pissed people off or left them stunned and puzzled over what kind of loon I was! LOL I broke through the opening and ran the opposite way towards the start into the crowd! I was in the far left hand side so it was not too disrupting. I yelled "Sorry! They told me to go the wrong way!"

When I passed the pad on the ground which started the timing chip, I immediately turned back around and began my race! I wondered if it was going to throw off my time as I passed the start twice which activates the timing chip. I do not have a good record with timing chips working perfectly (missing the timing chip in the Furry 5 K last year and a very inaccurate time in the Big Climb this March because I did not know I was supposed to pass a certain point in the upstairs lobby and turn the chip in when I finished. I went back to wait for Harley so I could get a picture.)

After all the confusion, I was off and could relax. I remembered to look at my watch about a couple blocks ahead of the start line. I think I recall it being 7:04 or 7:05 am. Seeing that I had sort of "cut in line" at a major marathon of thousands, I was not squished in the pack and had some room. However, this first leg of the course was on the streets heading out of downtown Eugene which were not perfectly level and had cracks popping up here and there. I had to be VERY careful to avoid them while spacing myself appropriately from people so that our arms or legs did not become entangled causing me to trip.

For some, the weather probably really sucked but it was "just right" for me. I do not do well in the heat so a nice cool drizzly day not only provided me refreshment but also kept my body at a very comfortable temperature for running. Further, the glare of the sun worsens my double vision and a dry day aggravates my "dry eye" at times causing a stinging or burning irritation. So I was really pleased with the weather and wore the appropriate layers to keep me comfortable (not too hot and not too cold). I bought a cheap pair of $2 gloves at the expo the day before which I would not be heartbroken or "bank broken" by tossing away during the event.

Running in the pack even though I kept a pretty nice cushion of space around me, did really take some getting used to. I could not keep at the constant pace I had practiced. People were continually slowing down, speeding up, weaving in and out, and then there were those darn pot holes, cracks, and large puddles to avoid too. I ended up zigzagging around to dodge all of the obstacles and so that I would not run into someone or step on their shoe (don't you just hate it when someone steps on the back of your shoe and your heel slips out?). Even so, with all of this slowing down and speeding up, I strived to keep the invisible "bubble" protecting myself. My concern was falling which I could not emulate in practice. If someone were to elbow me, I could possibly lose balance, trip, and fall over. But the other runners in the marathon seemed quite considerate. I did not get trampled by anyone and everyone waited for openings to safely pass (unlike when I walked the full Seattle marathon in 2006).

Within a mile, I chose to use the first honey bucket on the course which I think was actually someone's private latrine. You know how someone is doing a landscaping or remodeling project and the contractor puts a honey bucket on site for the workers? Well anyhow, the day prior, my dad drove me through the entire course so I would know where to go on event day. This was the first bathroom we came across on the course and I thought it was a good choice to use because I would not have to wait in line at the designated marathon bathrooms. Also, I did not want to worry about having to go while I was running along with no bathroom nearby. I wanted to go the first chance I got so I would not have that worry (In practice, I had to go within the first 15-30 minutes. Many readers may find that an uninteresting thing to write about but I know that it is most likely a question in the mind of some of you doing your first marathon. I know it was for me! I was so nervous about that when I walked the full marathon and wondered if there would be ample enough restrooms along the way.)

By mile 4 1/2 Imy hands were absolutely sweating and roasting! I could not stand to wear the glovew any longer! Yet I could not bring myself to just throw them down on the course. I opted to carry them until I saw my family at the 6-6 1/2 mile mark. However, carrying them became quite tiresome. After mile 5 I spotted a lady volunteer on the side of the course. I ran over to her, handed her the gloves, said "Here is a souvenier for you" and continued on my way.

In practice I only carried a water bottle if I was running 8 miles or more. When I ran longer runs, I would try to wait until mile 8 to take my first drink. Since there were lots of water stops on the course, I did not carry any water with me at all and I GREATLY depended upon the water stations available. I think I stopped at every single one except for 1. In total, I think I made about 6-7 hydration stops. I had to stop because I am unable to swallow if I am moving. So each was probably about 20-30 seconds to gulp down a wax paper dixie cup of refreshment. Only 1 stop did I drink gatorade provided. I fixed a sport bottle of FRS energy drink that my sister gave me after mile 6. I probably drank 1/3 to a 1/2 of it.

In all, the course was pretty fantastic and I was able to maintain a good cushion bubble around myself until we reached a bike path 5-6 feet wide at miles 7 and 8. On the trail it was a bit cramped and more like pickles in a jar rather than sardines. In many places the grass was too long or the terrain off the trail to lumpy and uncertain for me to pass. Thus during that stretch, in a few places I had to wait it out before I could pass. But that was alright because it gave me a good opportunity to rest. During practice, miles 7 and 8 were challenging and the run became a battle of "mental wit" to keep going.

There was only one section of the course we were unable to explore by driving through and that was between miles 10 and 12. I studied the map carefully as this was the most critical section to be familiar with for that was the point where the full marathon runners split off on a longer route while the half marathoners followed a different path. I was a little anxious about going the right way.

Just after the split, I reached mile 11 and was pretty relieved. Yet I came upon another mileage marker that said 15. For some reason, during this section I was surrounded by fewer runners. I was running for what seemed like a while and did not see any other signs. I began to worry that I took the wrong path and was running the full marathon route! Mile 12 seemed like it was taking FOREVER to reach. There were not any spectators on this stretch either so I grew even more concerned. I began to ponder what in the heck I would do if I took the full marathon route. Would I just run the half marathon distance and then walk the rest? No, there was not time for that. My sister and I had to drive back to Seattle that day. Would I just run as far as I possibly could then? "Cripes! I am exhausted and don't think I could run a full marathon today!" I thought. So then I contemplated if I reached mile 14 if I would turn around and track back to get on the right course. But then I would run past a half marathon and my time would be screwed up. At about the time I was heavily weighing my options, I finally reached the 12 mile marker. "Phew! Thank God!"

Now I was in the home stretch! After the 12 mile marker we entered the Eugene streets again. It seemed like we were back on the same stretch we began on. However, there were people on the other side of the road divider running in the opposite direction! I had been running almost 2 hours so surely they could not just be starting! Confused, I was leery to "open it up" as I was uncertain if I was going to have to turn a corner and run back the same direction to the finish. I wanted to conserve my energy.

A few people stopped running and started walking. I thought "Geez! You ran this far. Why stop now at the easiest part? You are almost there!" While thinking to myself and hearing Harley's voice of telling me this is the easy part (in my mind), I spotted my sister on the side of the road. She ran along taking photos of me which pschyed me up. I saw the corner ahead with the finish line in the distance. With visual confirmation of the distance I had left to the finish, I mustered all the energy left in my reserves to come in strong!

What satisfaction to have set a major goal which you were not even sure at first was possible and to have recognition of of accomplishing it by having a volunteer drape a finisher's medal around your neck! It was absolutely perfect! Just after I crossed the finish line, the sun peered out and it became a beautiful day! What a reward! In recovery, there were space blankets to warm our wet and rapidly cooling bodies and a plethora of food from various sponsors (pancakes by Krustea, Subway subs, small packs of doritoes and cheetos, nestle chocolate milk, water bottles, etc.). Outside the recovery gates were lots of treats to replenish electrolytes - cliff energy bars, Shot blocks and various sport drinks).

Thank you to my parents and sister for helping to cheer me on, offering support, and for making the event very special for me, to my husband Harley for providing the means for me to be an endurance athlete, enduring the time and financial sacrafice while I train, the freedom to help others, and for being my biggest fan, to my sister Michelle and DJ for driving me down to the event, to all my sponsors who helped me to raise over $5500 for NF2 research (as well as the sponsors from my hike last fall who helped me to raise an addition $5200 for NF2 research), Tim Wantabee at the Redmond Reporter for writing an excellent article about NF2 and my event which was featured on the front page of the May 1st issue of the Redmond Reporter, to fellow endurance athletes and friends who shared training stories and tips, and to all the friends and family who encouraged me during training. Without all that you have given and shared, I could not have accomplished my most challenging feat yet! Thanks for helping me to keep hope, to believe in myself, and helping me to attain the means to inspire and offer hope to countless others! I am very blessed and very grateful for your support!

Scammer Targeting the Deaf

About a month ago when I returned from the Eugene half marathon, I received a series of instant messages on yahoo instant messenger wishing me congratulations. Initially, I thought it was someone who heard of my unique accomplishment through a person I know (I am disabled in that I lack balance function resulting in a very poor gait and get double vision when exerting myself, so running a half marathon is quite a challenge. Further, it was a unique endeavor as I am a deaf athlete and out of 6000 runners, there was either a small percentage of us or perhaps I was the only one!)

So given my deductive reasoning, I just thought it a sincere and harmless congratulatory sentiment related to my weekend. Therefore, I made the mistake of adding that person to my buddy list online. I then began receiving many messages from that person and they finally caught me while I was online and responded.

It turns out that it was a scam congratulating me for winning thousands of dollars if I would only give out my personal information to meet their "laid down requirements". What the heck is a "laid down requirement" anyway?

Recently, a reader reported the same intrusion happening to her. It is the EXACT same format and very often the SAME wording! Of course she was a little less pushy and the conversation was more civil, whereas mine resulted in threats by the scammer that I was going to go to jail for not believing him/her. LOL

So the scammer is still out there. Please be warned and please be careful! DO NOT give out your email or personal information! That makes you vulnerable and susceptible to identity fraud which is actually a HUGE problem. Keep your info safe! eh?

To read both my experience and Heather's recent scammer attack, click on the words "Scammer Warning Post" to be taken to the original post. Heather has copied and pasted her IM dialogue with the scammer in the "Comments" section at the bottom of the post.

Scammer Warning Post

Monday, June 01, 2009

Birthday Boy

Here is my dad, the birthday honoree we threw a party for last Monday (his birthday is the 26th but they had to be back in Oregon on Tuesday. So they came up to visit for the weekend and we celebrated before they drove home).

His ice cream cake is in a tupperware container because he started eating it the night before and we also needed a way to fit it into our freezer so it would not melt on such a hot day.

Obviously, I was taking a vacation day off of South Beach and thoroughly enjoyed scarfing down a HUGE piece of ice cream cake. Harley was very good though and upheld his committment to the program while the rest of us sugared out! ;-)