Very Happily Earning Bling

Approaching the finish line at the Seattle Rock and Roll marathon June 26 and posing for my finisher photo

Pleasantly the Seattle Rock and Roll half marathon on June 26th went very well for me despite the difficulties I had during training with severe anemia resulting in mental/physical fatigue and hamstring tendonitis that I sought a therapist for. Honestly after the first month of training, I had concerns about whether I was going to need to walk or walk run this one. I questioned if it was just too soon post a major brain surgery to take on this kind of demand on my body (twice as many this time.....4 brain tumors operated on only 7 months prior to the event). However I was going to do it, I was committed to following through and honoring my word of running and raising money for the NF community.

This year, being my second half marathon run, was pretty exciting as not only was I a part of a team but my husband and sister were also running the half marathon with me - the more the merrier! There is nothing like teammates to motivate you - especially for something as grueling as a marathon!

The night before, Harley and I had a great time at the team pasta party meeting with the team from various parts of the country, learning stories of other NF patients and learning the meaning behind running or walking for this cause. FINALLY, I got to meet the infamous Steve Kendra - director of the NF endurance team - who I have been cooresponding with for years (Steve traveled out from Pennsylvania for this event).

Every year when I engage in an endurance event for a cause I am greatly moved by meeting truly altruistic people who choose to take on this kind of challenge AND raise money for a cause out of the goodness or their hearts not having any connection to NF or any other cause. Those kind of people are TRULY amazing heros to me! Again, this year I had the good fortune to be sitting at the same table with this year's NF endurance "good samaratin". Thanks Cookie! It was so great to meet you and Ken!

The morning of the marathon my sister and I lost track of my husband Harley. There were thousands of people!!!! I heard there were AT LEAST 27,000....the largest event I have been in by far. So my sister Michelle and I started out together in the same corale which was rather special. :)

In this marathon there were quite a few more participants than when I ran the Eugene half marathon last year. Therefore, I had to do quite a bit more weaving in and out of people as well as passing. I had no idea what my finish time would be this year because I had such a hard time training. Thus, I did not have a good estimate for my starting corale but that was ok because I really enjoyed starting out with my sister.

I knew for certain that I finished just under my finish time from the year prior. Amazingly however, I finished in just over 2:05, 9 minutes faster than last year!! So I definitely earned the huge bling they draped around my neck when I crossed the finish. But even more than my physical effort to earn the medal, I earned by fulfilling a promise to raise research money for the NF community. That is the part that is important - Running for a Reason.

Thank you to all of our supporters and my parents who came up to join us in celebrating/cheering us on! We love and appreciate you GREATLY! Thanks for helping us to earn that "bling". ;-)



If you are just learning of my event now or did not get a chance to donate, there is still time if you would like to contribute to NF research. Just visit the following link to make a secure donation online.
http://www.active.com/donate/nfseattle2010/RDufek1

More NF Heros

Saturday I was blessed with gorgeous weather for my long run. Next weekend will be my final long run before the half marathon on June 26th. It was about the 3rd or 4th time I tried out my NF endurance outfit (tank style running top with a blue running skort matching the words "NF Endurance" on my neon yellow jersey). The weather was HOT - 85 degrees with barely a cloud in the deep blue sky. Although it sounds like the most ideal of conditions, such bright days enhance my vision impairment making my visual perception more distorted and double vision more intense. As a result, I had to look mostly at the ground in front of me. With my difficulty seeing and the long grass on the side of the trail, I completely missed one of the mileage markers and ran a mile and a half further than I was supposed to (10.5 miles instead of 9). In addition, I am not at my best in hot weather. Although my attire kept me pretty comfortable and the occassional tree shaded areas gave some relief from the hot sun, halfway through the run my feet began to feel like they were on fire. They ached and were sore but I kept pushing through the 10.5 miles thinking of my how feet pale in comparison to the trials my NF heros have endured.

Less than 2 weeks now and I will run my 2nd half marathon to inspire, and raise awareness and research funding for NF. Here are a few more stories about my NF heros that I run for:



Leah Manth

Leah was officially diagnosed with NF2 in July 2007 after a 7 month odyssey. At 10 years old she has already endured 3 major surgeries and 3 minor. She had a lesion removed from her chest and scalp in January 2007 that were incorrectly determined to be neurofibromas. So her parents spent the next 7 months preparing her for a life living with NF1. It wasn't until a MRI scan showed a huge cervical tumor and the negative NF1 bloodwork that their local neurosurgeon said she may have the rarer form of NF known as NF2. The week the blood work came back confirming the NF2 diagonsis, the pathologists at Boston informed Leah's parents that the neurofibromas from January were instead schwannomas, confirming the that Leah had NF2.
Leah had the cervical tumor removed in Dec 2008. Normally, this type of tumor lies dormant for many years but Leah's started growing and compressing her spinal cord. At the same time, another typically slow growing brain tumor known as a meningioma had grown significantly and needed to be removed in order to prevent detrimental damage. Doctors operated on the cervical tumor in her neck first with the hope of going back in a few months to remove the meningioma brain tumor. As Leah's parents prepared her for another surgery on the meningioma tumor in June of 2009, they found out that her cervical spine had collapsed. A somewhat emergent surgery known as both posterior and anterior cervical fusion was performed in early August 2009. Because of this surgery, Leah had to wear a jr cervical collar for 6 months (August 2009 to January of this year). During the time she had to wear the collar, the brain tumor kept growing causing headaches. Unfortunately, due to its critical location near the motor cortex surgeons did not want to wait until she no longer had to wear the cervical collar to operate. Thus, Leah had her first brain surgery in November 2009. Because of the complicated nature of NF2 tumors often fused to important structures in the brain, surgeons were unable to remove the entire tumor meaning it is a high probability it will regrow requiring further surgery.
In addition to the spinal surgeries, brain surgery, and removal of the schwannomas, she also had a lip lesion removed in December of 2007. Her parents have decided to chase the cosmetic lesions that bother her. Athough she has others on her body her mom says that at the age of 10, Leah is just more concerned about being a kid.

Leah is also a fellow participant with JT, Oliva, and I at the National Institute of Health where researchers are trying to understand the growth mechanisms of NF2 tumors in order to determine a pathway to treat them with theraputics.



Jeff Bristow

My name is Jeffrey Keith Bristow and I live in the UK. I am 41 and single. Although I am in a wheelchair, I live on my own and I do everything for myself. I like it that way and its good to cook or go to to bed when I like. My parents were told when I was 4 years old that I had NF1. Over the years I have had many tumors removed and many problems to deal with. In my early 30s I started to have problems in walking due to a large tumor at the back of my knee. The doctors did a test and discovered the tumor to be a high grade sarcoma cancer. I had to have my leg amputated well above the knee. So I had problems with a prosthetic leg. 3 years after losing my leg I found out I had thyroid cancer in my throat. I have now been in remission for 3 years. All is fine but I still have to go for tests yearly for both my right leg and also my thyroid cancer. So far all is well.
Although Jeff lives with chronic pain like many other patients with NF1, he spends his time helping cancer patients and volunteering with the local hospice program.

My NF Heros

On the 26th I will be running the Seattle rock and roll half marathon for the Children's Tumor Foundation NF Endurance team. I am running for everyone affected by the disorder Neurofibromatosis.

See Rebecca's Rock'N Run

The pictures above are some of my "NF heros" who inspire me to keeping pushing when I am tired, my legs hurt, I can't see straight from double vision, my feet are blistering, and my glute and hamstring are aching due to tendonitis. Personally, I feel my trials pale in comparison to what they have been through already in their young lives. Their incredible attitudes of perseverence in spite of challenges, hardships, and tragedies motivate me to continue to fight for this cause even when I am physically as well as emotionally tapped. (Truthfully, fundraising can be as trying as the physical if not more at times.)

Karin's story (in the purple shirt with her dog Amber)

Hi! I Have NF1 and Pseudarthrisis of the tibia. My leg broke at 8 months old in a cast. It was placed in a cast to protect it. With this condition associated with NF once the leg breaks it never mends. Amputation was suggested many times to my parents but they rejected. I was put through many failed bone graphs and orthopedic operatons. Back and fourth from a long leg brace to a cast. I was in a long plaster cast for 3 years for each operation, then back to a long metal leg brace, pins, rods, fixaters, and operation after operation it never mended. My shoe size was 4 size differences and 3" shorter in leg length. Just 7 years ago I developed a major bone infection due to all the failed operations. I had no choice but to loose the leg in the long run. I still have tons of pain 24/7 and major phantom pains. I have no idea what life is like with no pain. I manage OK and get by OK. I'm a part time teacher's aide and enjoy working with kids. I have a womderful husband and a nice home. I feel lucky compared to some people with NF.

Note: Karen and her husband have chosen to not have children due to the 50% chance of passing on this genetic disorder to each offspring. Karin does not wish to put a child through the pain and constant operations she has been through. Many others with NF feel the same. With the tumor load many with NF2 have in the brain and spine, a pregnancy is very harsh on the body and is believed to encourage sudden rapid tumor growth.

JT's story (center in the blue t-shirt)

JT is a very wonderful 7 year old little boy and a budding endurance athlete running in children's races for his friends in the Children's Tumor Foundation. JT lost his grandmother to NF2 shortly after he was born when she was only in her early 40s. His mom Olivia (who is another hero of mine and motivates me to do these runs....I try to keep up with her! lol) is also an NF endurance athlete with NF2 and team captain down in LA. Olivia has endured SEVERAL spinal surgeries as well as radiosurgery for tumors on her optic nerves, cervical area of her spine, and in her brain. Although JT looks normal and has a fantastic smile just like his mom, he also has a tumor on his optic nerve and is blind in one eye. His saga with NF2 is only just starting. That is why what his mom and I are doing for our cause is so important so that we can provide hope and a chance for children affected by NF.

Devon's story (during group storytime in the hospital)

Devon is 8 years old currently but his journey with NF2 began 3 years ago. Since then, he has already had multiple brain surgeries and spent lots of time in the hospital but he always manages to have a winning smile on his face! He is another budding athlete who participates in children's marathons in Canada. Here is what his mom Kim wrote about him:

Devon is a spontaneous mutation (meaning it was not genetically passed on to him from parents or grandparents). He was diagnosed at age 5 because of the devastating effects of a large meningioma compressing his brain stem. At the time of diagnosis, he also had 4 other tumors and was blind in the (r) eye from one of them.
Devon has had 3 surgeries, 2 when he was five and one when he was six, all for the same tumor. He had a meningioma next to his brain stem involving the 5th-9th cranial nerves. When diagnosed, it was the size of a baseball. The residual tumour is now very small but it was a very aggressive one and they could not remove it all (it is "stuck" to a major artery in the brain). They decided it needed to be radiated or it would grow back and the opinion was that they could not operate anymore. So he had 6 weeks of daily radiation, 5 minutes per day.
He has also had a few smaller surgeries for post op complications. He developed a Meningocele after the 3rd surgery that required inserting an external ventricular drain into his spine and 3 weeks of bed rest.
In the fall the MRI showed enhancement (growth) on the 8th cranial nerve indicating the start of bilateral vestibular schwanomma's (the tumors which cause deafness, loss of balance, and facial paralysis). He is currently 8 yrs old and living life to the fullest! He is an inspiration to me!

Back To Work

Just a short post here as I need to head in for a makeup session with my trainer that I missed yesterday. Last week the GI doctor wanted to perform a test to investigate for gastric (internal) bleeding as the source of my anemia before I ran the half marathon and could possibly do damage if there was a problem. Distance running is quite a strain on the body and gastric bleeding problems are common with runners.

FORTUNATELY I recieved good news! While the search and pokes to find a vein for an IV was sort of a drama, the colonoscopy and endoscopy procedure was cake compared to the things I have gone through! I was a little unprepared that it is actually a full medical procedure in which one is prepped just like any other surgery - gown, in a medical cot, IV, etc.. But after the IV apprehension, I barely remember the hour and a half procedure even though I was under conscious sedation. I do not even recall them putting any kind of tube down my throat.

Everything looked great! No internal bleeding problems so I can commense with training and happily run the half marathon in full glory!

The Scare

So I last left you with the story of my increasing fatigue and difficulty functioning. 4 weeks ago I emailed my general internist on a friday about the issue and he ordered me to get a blood test that weekend. When Saturday rolled around, I did not think it was THAT urgent of a problem so I did not get the blood test until in the early evening because I had to drive to a different town.

Apparently, they can get results back fairly quickly. I imagine the friendly technician was also took extra care in the urgency of the results as I had explained I was having a significant fatigue problem and difficulty with my endurance training.....the tech is also an athlete and competing in his first triathalon. I also mentioned in our conversation that I was a blood cancer survivor and had brain tumors on top of that! Therefore, I am sure he was anxious to analyze my results and that my history raised some concern. I went home happy with the pleasant phlebotomy experience and relieved to get it taken care of, not expecting to hear anything back until the next weekday.

Around 10:30 or 11 pm, Harley gets a call on his cell phone. I wondered who could be calling him and he seemed rather serious. When he finished the call, he signed to me that it was the doctor who could not reach me. My results were not good and he urged us to go to the emergency room. It was an on call doctor from my general internists office who left several messages on my VCO phone. People VERY RARELY ever call me so I am not in the habit of checking for messages regularily. Hence, the late evening call.

I was severely anemic with a hemoglobin count of 7.5 which was only 0.1 higher than when I was diagnosed with cancer. I had periods of slight anemia following my first surgery in 2007 but nothing ever serious which raised the attention of doctors. The hemoglobin is the oxygen carrying capacity of your blood and mine was so low that it is no wonder I was struggling to breath after 15 minutes of running. The hematologist we saw later was surprised I even managed to run 3 miles and to keep up my activity level as long as I had.

So it was late at night, I was tired, and I just wanted to go to bed instead of sit in an emergency room for who knows how many hours. My last experience there was right after I came home from brain surgery where I was so ill that when they finally called me into the office, I started bauling because I could barely wait to get a bed and an iv to feel better. After my blood test, I had stopped to workout at the gym and had yet to shower. Having spent my energy reserves for the day, I so badly wanted to go to sleep instead of sit in the waiting room of an emergency room.

I pleaded to stay home and wait for morning to go the hospital. But the doctor informed Harley of the potential seriousness of the situation and the urgency that I come in to get further tests taken. This scared me. I have never been called in like that for anemia before. While I showered I became more amd more disturbed and frightened.

To make a long story short, after several hours at the emergency room and another IV, I was finally released after my tests came back clean. Phew! There were still additional results to come in but the important ones and chest xrays I passed. The ER doctor was reluctant to tell me what they tested for as she did not want me to worry unecessarily. She said it was a long list of like 40 things and my vitals were actually great, unlike the time I had severe anemia at my cancer diagnosis. After speaking with the hematologist, the ER doctor instructed me that there was no immediate danger and that I was to have an appointment with the hematologist at the Cancer Center monday to discuss an iron infusion treatment.

What a HUGE relief! - both physically and mentally!!! It was a little psychologically difficult at first to get my first 2 infusions because I had to get them at the same place that patients recieve chemotherapy. I HATE needles and getting an IV. Going through the drama of finding a vein, warming the veins, and pumping stuff into me reminded me of chemo which gave me an unsettled feeling. When having an IV after surgery, I was too drugged up and sick to care so it did not affect me the same. Now however, I was not drugged up or sick where I was desperate for them to pump medicine into me. My IV time was drastically shorter than each chemo treatment I had! Each infusion was a half hour or less instead of ALL day! Further, instead of making me feel like total crap afterward, each infusion made me get stronger and stronger where I craved more so I could have the energy to take on more activity.

My treatments were twice a week for 3 weeks. The second week my mother-in-law was here and accompanied me to each treatment. Visiting with her while we waited for an IV nurse and for my veins to warm up so they can find one, eased my anxiousness about being poked. I tolerated it quite well and found going back very favorable as each treatment allowed me to return to running/training and go further. I actually slightly missed that treatment ended after 3 weeks as each gave me a boost. At the end of 3 weeks my blood chemistry was re-evaluated which improved remarkably but still slightly anemic. At the end of last week I was getting tired again so on friday another blood test was taken and I was given half of a dose. This time my blood chemistry was nearly normal but the hematocrit at the low end so my body is probably "deconditioning".

So now why did this happen in the first place????

Well we really do not know. It is possible that I am experiencing gastric bleeding which is common with runners. Today I met with Gastroenterology and the doctor wants to investigate to make sure I do not have an ulcer or something causing intestinal bleeding. We are doing the test before the half marathon because if I am having gastric bleeding, it could become compounded by the strain of the upcoming half marathon.

Another possibility but extremely rare is that I could have an intestinal schwannoma which has been found in NF2.

So although I am doing great, in the back of my mind there is a litte tiny uneasiness as my grandfather had colon cancer in addition to blood cancer - not exactly favorable family medical history in relation to this test. I am hoping it is nothing too serious that would need any kind a procedure which could hinder my training and event. So send me good vibes! :D

Burning the Candle at Both Ends

In the photo above, at the Tiger Mountain summit April 11th with Katie and Jake

Bottom photo, at the Cascade Cancer Center in Evergreen hospital getting my vitals taken (blood pressure, pulse, and temperature)



Hello and sorry for the very long delay in training reports. I have been in an exhaustive slump since before the Big Climb event in March. At first I thought it was due to an illness I just could not seem to shake following my NIH visit in early March. I went through dips of getting ill, resting for a day or so, getting better, and then declining again once I tried to get back to training. As my training intensified and more was added, it was as if I finally could not move anymore. No matter how I desperately tried to motivate myself, I was really hating running and the task was becoming more than an unenjoyable chore.

The day after the Big Climb, Monday March 22nd, I was hammered for 4 days with a virus causing a sore throat, body aches, congestion, and eventually turning into a head cold. By Thursday evening, I became well enough to catch one of my last training sessions with Paul - his last day at the gym was April 1st as he has made the decision to put his full focus into finishing his degree. Saturday I returned to hiking and Monday March 29th I began my first week of half marathon training. I also got in another quick hike on Tiger Mountain before our last training session on Wednesday March 31st.

Easter marked the beginning of week 2 of my half marathon training which seemed to go well. Wednesday April 7th, was the kickoff of our hike season with Team Survivor NW and it went pretty good. I definitely was not a rockstar nor the fastest hiker but it was to be expected as I was running 4 days a week, lifting weights 2-3 times a week, and then walking my dogs for an hour on the opposite days. By the end of the week I REALLY slogged through a 40 minute run but thought I just had to get used to this intensive amount of activity. The next day (Sunday) I hiked 2522 foot Tiger Mountain but my time was the slowest I have hiked it all year - dropping from my record reaching the summit in 1 hour to 1 and a half hours! I was not too worried because the dogs and I had a difficult run the day prior and needed a nice leisurely pace for recovery.

The rest of the week started out ok but my body and brain began to have a breakdown. I pinched out a 3 mile run on Monday at the start of week 3 (April 12th), followed by water aerobics and strength training on my rest day. I managed to pump out a second hike for the week yet was strangely winded after as if not entirely in shape for hiking yet although I had already been out at least 12 times for the season. Because I skipped my run on Tuesday, I had no choice but to try to make it up the same day as the hike. That evening I could barely stand the 3 mile run and begged the Lord to at least get me across the last bridge ending 3/4 of a mile short. The next day I skipped my 4 mile run completely and then on the day of my long run I only pushed through 5 miles of my scheduled 6.

Continuation

The 3rd week of April, 4th of training, I painfully and exhaustingly pushed through 16 miles spread out over 4 running days. However, I became ill midweek and had to miss my weekly hike. The evening before, the sore throat returned followed by body aches during the night. I agonized that the forecast was to be nice in the morning. If it had been beautiful out it, was going to kill me to miss a hike to one of my favorite and most scenic trails on a gorgeous day. Thankfully when I woke up after getting only a couple hours of good sleep, it was raining and cloudy. My battered body was quite relieved to take a break for a day to heal before running again. I missed water aerobics as well and each week it became harder to fit in the strength training on top of it.

When the last week of April rolled around I was hurting really bad! Harley was getting worried because I was frequently napping and completely wiped out. It became common place for me to pull my truck over on the side of the road or a parking lot for a snooze because I struggled to keep awake while driving. My 3 mile at the beginning of the week was alright but NOT at all enjoyable. I had developed a very painful hamstring tendonitis which was diagnosed by a sports therapist the following day. Further, I was even having difficulty breathing lying in bed upon waking and began having dreams that I was suffocating. In one dream I was scuba diving and ran out of air. Therefore, the combination of being short of breath with the injury causing pain to radiate to my quadriceps and knee, became a real mental battle to deal with the physical ailments.

On my second running day of the week, no matter how hard I tried, I could not complete the 5 mile run. As a matter of fact, I think I walked most of it. I questioned myself of whether I was making up an excuse because of the tendonitis injury. I convinced myself after several attempts at running that it was ok to briskly walk this one out instead. Then the strangest thing occurred within the last mile and a half. My brain and body was so exhausted/drained that I felt like crying. Actually, I think I did cry. I felt mentally as well as physically fatigued like when you pull several allnighters in a row cramming for an exam. I wondered what could possibly be going on. Was I depressed? I seriously contemplated if I should seek out the counsel of a therapist.

Although I managed to attend the weekly hike, I really lagged behind and was constantly out of breath. I again convinced myself that it must be due to the higher weekly activity level/physical demands I had compared to the rest of the hike group. My mind was so tired and vision distorted that when another hiker and I from the group came to a fork in the trail, I completely misread the large white arrow indicating the correct path and led us astray. I was astonished when we returned to the sign to see that I had totally missed the very obvious arrow showing what direction our group had traveled.

Things got worse throughout the rest of the week. My three mile Thursday run was another failed attempt. Within minutes I was winded and it felt like a heavy weight was sitting on my chest which began to clue me in that something was REALLY wrong. I lasted for only 15 minutes and then I had to walk it out for 12 minutes before starting up again to make my way back. On the return route I only had the energy for another 15 minutes. I could not complete the rest of the route and walked for another 8 minutes to reach the vehicle.

Alright, so I was tapped out which can be understandable with running and even hiking. Therefore, I planned to catch the water aerobics the next morning on rest day. Whoa! Alarm bells ringing! I had to drag myself to class and could barely stand to keep up. Normally I am one of the most energetic in class but on this day I was totally sapped. In my 3 years of doing water aerobics including recovery after 2 brain surgeries, I have NEVER felt like this. The entire time I looked at the clock which seemed stagnant. I wanted so badly for class to be over with so I could rest in the hot tub. My entire being wanted rest. My arms and legs felt trying to move stiff sticks through a vat of peanut butter.

That afternoon in desperation, I emailed my general internist to inform him that something definitely was not right. My first thoughts at solving the problem was to check my blood chemistry for anemia (which I have history of) and thyroid which runs in my family. He promptly emailed me back that evening with instructions to get a blood draw at the nearby hospital.

Stay tuned for the rest of the story on the next post. :)

Kili Kickoff Speech - Our May NF awareness event

This evening was our Kilimanjaro trek for NF2 kickoff party at the Seattle downtown REI. My husband and mother-in-law did a marvelous job with the planning as well as presenting. Harley really took me by surprise giving a very professional look at the disorder complete with MRI images of my brain and descriptions of the surgeries that become necessary to intercept the life threatening danger cause. Cheryl, wrote a touching account of how I have imprinted on her a zest for life while outdoor photos they selected of me scrolled through on a screen in the background. Tim O'Brien, our trek guide, delivered a spectaculor overview of our trip plans as well as a wonderful slideshow illustrating our exact planned route. In the midst of all these fabulous speakers, it was my job to give a 5 minute speech about my story, what compelled me to undertake the challenge of climbing Kilimanjaro, and what inspires me to keep going. While I gave my talk, another slideshow ran through the numerous photos from other NF2 patients. Below are the words I shared. I hope you enjoy! Thank you to each person who played a role in contributing to our event this evening!

Thank you everyone for showing your support by joining us this evening. Your encouragement and enthusiasm will keep us motivated as we train to reach the top of Africa. We are very grateful to all our sponsors who not only believe in us but share in our vision to find a cure for NF2.

By the way, prior to learning of this event or getting to know me, how many of you had heard of Neurofibromatosis before and understood what it was?

If the name is new to you, you are not alone.

In 1999 following an MRI scan of my brain to investigate my unexplainable hearing loss, I was told I had Neurofibromatosis Type 2 or NF2 for short.

“Neuro what?” We could barely pronounce the name let alone spell it.
Despite that I have a science degree and my mom is a nurse, we had never heard of this NF nor seen it in any science or medical books we had come across. While we were relieved that I cleared all the tests for a cancer relapse from the Hodgkin’s Lymphoma I had in 1993, it was not at all comforting to learn that my numerous brain tumors were going to grow at an unpredictable rate for the rest of my life. Further, it was incurable and most likely would result in complete deafness.

Just those 2 facts were a tough pill to swallow as a young adult. As I later discovered, the hearing loss and deafness were the easy part.

Being an avid nature buff with an insatiable passion for mountains and the sea, 10 years ago I conceived of the idea to climb Kilimanjaro. It was my dream to raise awareness and support for research by becoming the first patient with NF2 in the world to make it to the summit.

Unfortunately, the unpredictability of NF2 began causing serious problems in late 2004 which crushed my dream at the time as well as robbed me of the ability to do several activities I love. In 2005, I could no longer partake in my passions for hiking and diving and my eyesight was in grave danger.

By the grace of God, time, hard work, and very skilled hands 2 brain surgeries later, I have finally been able to return to hiking and diving again. I feel blessed that I am of the very fortunate minority to regain some function and even consider such a feat as Kilimanjaro.

Living with NF2 can be pretty emotionally difficult and the complications life altering. I am often asked how I get through it and keep such a positive attitude. Admittedly, this was not always the case. During the most challenging of times, I sought comfort in the strength of Christopher Reeve and the optimistic words of Michael J Fox as they succumbed to traumatic events which permanently changed life as they had known it. I admired their perseverance in turning their tragedies into an opportunity to serve a cause for those less fortunate. Such an ideal is what kept me hanging on when things seemed most unbearable.

As I was starting to recover a year after my 2004 radiosurgery, founder Sean Swarner of Cancer Climber rekindled the flame of hope in my heart. I was incredibly inspired to learn of his accomplishment summiting Everest with partial use of his lung that was ravaged by 2 childhood cancers, one of them being the same that I had! But summiting Everest was not the reason why I had so much respect for him. It was because he did it to share his story to help others living with cancer. He overcame adversity for a purpose greater than himself to help others. Upon reading about his story, I told my husband I wanted to instill in others that same hope and inspiration which moved me. In other words, I set my sights on “paying it forward” as my goal in life.

So for the next 5 years that is what I have been working up to as a charity endurance athlete. I have been working out at Gold’s Gym since 2007 which has helped me to make MAJOR strides in my strength and balance. We are talking about going from falling over if I closed my eyes to completing 20 hikes and 30 dives last summer before my October brain surgery. So last summer we once again began to entertain the possibility of hiking Kilimanjaro if I made it through the surgery ok. My recovery this time around was very rapid allowing me to walk the Seattle half marathon 39 days after an intense brain surgery on 4 tumors. – to this date I have had brain surgery for 6 tumors. Therefore, in November we really started to seriously consider the Kilimanjaro trek. We wanted to grab the chance while I am able as NF2 has no guarantee on quality or ability of life.

That being said, we are very excited about this trip and our purpose. I greatly look forward to getting to know you more and seeing some of you at the top as well as training locally. Thank you again everyone for coming out to support us! Your participation is invaluable!

I get by with a little help from my friends ~

Team Captain Cindy Rulon of "Team Madison" pictured with her two children. Madison, the girl on the left is the team honoree afflicted by NF1.

I must confess that I am TOTALLY not a morning workout person and most definitely not an early runner except to do an event. I generally procrastinate the run all day and typically get out an hour to a half hour before dark. But team captain Cindy Rulon on the NF endurance team arranged the first team run for Saturday morning IN the town I live outside of. So I really did not have a good excuse to NOT go! Rather than a hindrance, I think the sharp spastic muscle cramp in my calf at 7:20 yesterday morning was God's way of ensuring I did not sleep through the alarm again!

Reminiscing back to my team in training days in 2006, I was missing the "team" spririt and motivation which accompanies being part of a group working towards a common goal. With the exception of my dogs, I have been running on my own for quite some time now. The will to run was starting to peter out on me this week so something scheduled involving other people is exactly the strucure I needed.

Unfortunately nobody else turned up but this ended up being a bonus for me as the team captain ran along side me the entire way! It was a especially unique to sort of focused attention because she is a full marathoner who I know has a much faster running pace. But kindly she ran along side and encouraged me the entire way by giving me a thumbs up at each mile.

Although it took some adjustment to learn to run with someone and was a little distracting, it sure was nice to have someone at my side cheering me on and supporting me the whole way. Being a Saturday morning on a popular trail in town, there were LOTS of other runners. There were also LOTS of people passing me which was discouraging. But with Cindy next to me the whole way, the feelings of discouragement were momentary as her presence kept me focused on the goal....3 miles, 3.5 miles, 4 miles, 4.5 miles, and finishing at 5.

I could have went for 6 as the training schedule I am on called for in week 3. However, I started the 10 week training 2 weeks early anticipating any need for injury, illness, or cutting back to recover. My training runs this week were very difficult/miserable and my body so fatigued. To start out I had no idea how it was going to go and just had it in mind to finish at least 3. As we ran along, I chose to go a little further. When I reached 5 I was satisfied to not overdo it in hopes that I would be recovered for a good week of training runs in the days ahead.

We ran 3 miles out from Marymoor Park which gave us a nice 1 mile cool down on the route back. Aside from allowing my body a good recovery walk, it gave Cindy and I some time to get to know each other (another bonus of being able to do a training workout with the team captain). Of course I am deaf and unfortunately conversations out in the elements are not exactly a 2 way street. Therefore, I ended up doing all of the talking and had the opportunity to share my NF story of being afflicted with NF2 (Cindy's daughter Madison has been diagnosed at a very young age with the other form of the disorder known as NF1).

It was a great way to end a tough week/road block in my training. A third added bonus is that Cindy reminded me that it was still morning and that I could rest, relax, or do whatever I want for the rest of the day! What a terrific weight to have off my chest and how freeing!

Thanks Cindy for the run and your encouragement! It was exactly the shot of motivation and inspiration I needed this week! :D

My Weakness

So yeah.....so much for my South Beach success and my dream of 17% body fat composition - the starting range of an athlete! LOL Two months later and I regained the 10 lbs I lost. So I need to start over. I confess after Valentine's day I went nuts! There were all the post Valentine's day chocolates and then the stores stocked the shelves with the Easter surplus. I took all of our easter candy and put it into a big tin and used a step ladder to stash it away in the far upper recesses of the bedroom closet. I have wishful thinking/hopes that maybe my terrible short term memory will forget about it.

So now I am back to square one. I started abstaining from candy and processed sugars Monday but then I had some glazed pecans I bought Wednesday and some M&Ms and a recess egg and bunny today when I pulled out the tin to empty more AFTER easter stock.

This time due to the nutritional demands of my training, I will not be cutting out carbs completely. I am suffering from fatigue which we figure is a side effect of my post NIH trip/Big Climb illness. Now that I am in full swing of the half marathon training and hiking weekly, I need to consume complex carbs for endurance energy.

Hopefully I will gain some will power and not dig into "the stash" or have a shopping breakdown.

The picture above is from the last day my mother-in-law, Cheryl, visited to accompany me on my NIH followup appointments last month. One of my favorite restaurants is the Desert Fire in Redmond which offers a Sunday brunch we had never been to. We decided that it would be fun to take her there for her last day. Wouldn't you know they had HUGE platters of chocolate chip cookies and really good Mexican cocoa.

Now how can one resist that temptation? Yes. I am very weak! ;-)

Got your Spirulina?

Argh. It was a tough long run this evening (5 miles according to the schedule but I forgot my watch and failed to start where the mileage markers start. So I just ran what distance seemed sufficient which could be 4.5 miles or could be 6.). Actually it was a tough training week all together. It did not help matters that Aunt Flo stopped for a visit nearly sapping the life out me (that is a joke by the way which originated off the Cosby show in the 80s for you youngins). :-)

Even with a full day of rest on Sunday and Tuesday, I still had inadequate recovery following the 50 minute run last Saturday. I was trying to catch up all week and it just did not happen. When I got back into it Wednesday I threw too many things into one day with a 4.2 mile hike with a 1200 foot elevation gain, one hour of weights on the legs, and a 40 minute run. Thursday I had to run again but was so relieved that the mileage for the day was 3 miles instead of 4!

Another contributor to my fatigue is my inability for the past couple weeks to get consistent and quality sleep. It is common for me to be interupted within 2 to 4 hours of sleep by having to use the bathroom - sometimes as often as 3 times within a night of trying to get a solid 5 - 6 hours of sleep. I have started taking melatonin but can only seem to pull off about 5 straight hours of sleep. So I am definitely going to have to work on that to get into a biorhythmn schedule.

Aside from the sleep, seriously though I am feeling drained. Of course I have to remember that it has only been 5.5 months since I had a MAJOR brain surgery on 4 tumors unlike when I was training last spring with the advantage of 1.5 years post surgery. So you have to wonder if perhaps that has something to do with my fatigue.

Anyone out there run a half marathon so soon after surgery?

I am desperate to increase my energy levels and efficiency. I felt the drag on the big climb this year when I thought for certain I would do well. Being sick I felt played a big part in hindering my performance but now I am starting to wonder if something else is at play here. I think I am in definite need of exploring additional supplementation and endurance sports nutrition to get waken those energy levels I once had.

It took the following article to prompt me to recall that I was using Green Vibrance last year with Spirulina (not the tastiest but it certainly helped!). So this evening I unburied it out of the back of the refridgerator and added a nice healthy scoop to some spicy V8. Hopefully that will do the trick! I am also considering investing in a book on endurance sports nutrition to attain better efficiency but I am a little undecided on which to get.

Any suggestions?

Now for the article - Got your greens lately? ;-)


Sports Science Update: New Superfood Enhances Running Performance
by Matt Fitzgerald
January 06, 2010
Comments
Algae superfood is shown to increase fat burning and antioxidant protection during prolonged running.


Spirulina is microalgae, powdery and brilliantly green, that is touted as a “superfood” because of its nutrient profile, which includes a lot of protein, vitamin B-12, the essential fatty acid GLA, beta-carotene, iron, and other vitamins, minerals, and phytochemicals. It is sold in powder and capsule forms as a nutritional supplement to be added to smoothies and such.

While it is not often claimed that spirulina affects exercise performance, a team of Greek researchers went ahead and investigated the effects of spirulina on running performance. Nine moderately trained male subjects received either supplemental spirulina or placebo daily for four weeks. Before and after this intervention, all of the subjects ran on a treadmill at 70-75 percent VO2max for two hours and then at 95 percent VO2max to failure. The whole experiment was then repeated with subject who received spirulina the first time receiving placebo the second time and vice versa.

On average, subjects were able to run more than 30 percent longer after spirulina supplementation (about two minutes and 40 seconds with spirulina versus 2:03 without). Researchers also found that spirulina supplementation increased fat oxidation and reduced carbohydrate oxidation during the two-hour run and reduced oxidative stress and increased antioxidant activity after exercise.

It is possible that spirulina supplementation enhanced performance in the high-intensity portion of the workout by reducing carbohydrate use and thus leaving more carbohydrate available. But spirulina’s antioxidant affects may also have played a role in boosting endurance at 95 percent VO2max, as free radical build-up in the muscles during exercise is an underappreciated cause of fatigue.

The study was published in Medicine & Science in Sports & Exercise.



Read more: http://running.competitor.com/2010/01/features/sports-science-update-new-superfood-enhances-running-performance_7682#ixzz0klz6majD

10 week half marathon training schedule +2

"This beginner half marathon training program assumes you have been running
consistently for at least 4-6 weeks and can run for at least thirty minutes without stopping before beginning the program. Do not run more than two consecutive days when
following this schedule." - MarathonRookie.com

10-Week Half Marathon Training Schedule
Week Mon Tue Wed Thu Fri Sat Sun Total
1 3 Rest 3 3 Rest 4 Rest 13
2 3 Rest 4 3 Rest 5 Rest 15
3 3 Rest 4 3 Rest 6 Rest 16
4 3 Rest 5 3 Rest 8 Rest 19
5 3 Rest 5 3 Rest 10 Rest 21
6 4 Rest 5 4 Rest 11 Rest 24
7 4 Rest 6 4 Rest 12 Rest 26
8 4 Rest 5 4 Rest 9 Rest 22
9 3 Rest 4 3 Rest 8 Rest 18
10 3 Rest 3 Walk 2 Rest 13.1 Rest 21.1

Once again, I am following the 10 week training schedule as outlined by Brad Boughman on his marathon rookie website www.marathonrookie.com.

Prior to the Seattle Big Climb event, I had been running weekly increasing the # of running days to 3 and reached 6 and 6.5 miles. Unfortunately, I was foolish in rushing the longer runs and did not stretch out adequately afterward (and did so 2 days in a row!). As a result, I have subcome to a nagging glute muscle injury which keeps getting aggravated during/after each run, even following days to a week off from running. To remedy it in between runs, I have been religiously massaging the glute muscle/hip using the foam rollers at the gym and doing long 30 second stretches of the muscle.

For the most part, I either run on a trail with mileage markers or have a general idea of the distance I am running based on time. Last Saturday I ran on a new trail in Oregon which claimed to be 2 miles in length one way. I finished the 4 miles in under 40 minutes and was skeptical of the length so I ran further down the other side of the trail to total 50 minutes.

When I am uncertain of the exact mileage, I estimate a 10 minute per mile pace and run 10 minutes for every mile according to the schedule. Yes, it is possible that I am running greater mileage per run (especially on paved runs) but that is great come event day! As I discovered last spring, my race pace resulted in a better time than I had anticipated in practice (I mostly train on gravel paths).

This reminds me about a lesson I learned of achieving efficiency. I recall learning to become a scuba diver in the frigid water of Lake Superior in fall 1991. The air and water temps were so cold that we had to pour hot water from 2 liter bottles down our neoprene wetsuits to keep warm between dives. At times I could not feel my feet or my hands. Within a few minutes of dipping my hands into the hot water, they tingled and ached as if being pelted by a million needles. "What on Earth am I doing here?" I wondered.

Sensing our discomfort, our dive instructor touted that learning to become proficient at cold water diving makes you a better diver overall. In essence, it was our training so that later on we can have a more pleasant experience. And I have to say he was right! Following 10 years of cold water diving, I finally was introduced to warm water diving while on our honeymoon in central America. Coming from an environmental requiring lots of exposure gear and technical skill, warm water diving is like diving naked (in a good way)! We enjoyed 28 dives during our stay and this past August we savored 30 dives within 11 day stay in Cozumel.

I must tell you that due to the complications of NF2, diving in cold water is not as easy for me anymore and I am not as skilled. In fact, with the problems centered around my balance and the brainstem compression, I had to take 4 and a half years off of diving. When I started again and transferred from the pool to the real environment, it was MUCH more challenging sometimes resulting in tears and anguish with questions of whether I could dive in the NW anymore.

But........we kept at it and viewed our coldwater diving as "training" so that we could be prepared and enjoy ourselves on warm water vacations. I now consider myself a "handicapped diver". Yet, when we stepped into that clear blue warm water, I felt very comfortable and back in my niche.

So back to my training.....running a little further or on terrain more difficult helps to make the paved 13.1 miles of the half marathon a go a little smoother. That is why often training recommends a "tempo run" day where you run up and down hills to build your endurance. Earlier in the year I had started doing that but have held off since the glute injury as running up hills can make the injury worse. Plus, I engage in elevation hiking at least once a week.

What is the +2? I consider that my buffer zone. I like to allow a couple extra weeks to either ease more slowly into the training depending on how I feel OR reserve those extra weeks for recovery time in case of injury (which I did need to use last year due to an IT band problem).

So that's the plan. I have been keeping up in my second week of training with a 35 minute run Monday, 40 minute run Wednesday, 3-3.5 mile run Thursday, and today I am due for a 5 miler.

Happy Training! :D

Happy Easter! - Taking a break from training

More Eggcellent Fun!

Pictured are some of the eggs we hid for the scavanger hunt. We each hid about 47-50 eggs (my sister and I) for a total of 100. She hides the real eggs and the other half were fake eggs that she put clues inside. Then I wake up and go hunting. When I am finished finding all mine, I write up the clues I have created the night before onto little slips of paper that I put inside each egg. Then I hide all fake eggs with clues in each egg hinting to the location of the next with the grand finale being the hidden location of each family member's easter basket.

Note the teal blue (the NF2 color) Kili egg with Harley's name - he is the founder of the Help Stop NF2 nonprofit and also the coordinator of the Kilimanjaro expedition for 10-10-10. The picture of Mt Kilimanjaro looked kind of sad so we don't see that part. LOL The bright green egg with purple butterflies is the NF2 egg.

Egg Coloring Extravaganza

Easter egg coloring/decorating and hiding/hunting is a family tradition my sister and I GREATLY look forward to. Her hands are very steady compared to mine so she is much more skilled than I at creating beautiful eggs! Every year we try to come up with something unique. Notice the yellow NF Endurance egg and the Climb for NF2 egg I made!. The writing on the blue Kili egg is pretty sloppy but it was a white crayon and I could not see what I was writing and just hoped for the best. On the back of the egg I painted Harley's name and drew a sketch of the mountain. The dye on the NF endurance egg ran because I wrote the name on the egg with a blue marker before dying it yellow. On the next post you will see how I painted purple butterflies on the bright green egg (the color representing NF Inc. and butterflies which is the NF2 mascot).

Back On The Trail Finally! - Hike #10

After a 3 week abstinence from hiking due to travel to the NIH, resting up for the big climb, and a week with a chest and head cold, I have FINALLY had the opportunity to return to the trail! By the way, it has also been pouring alot here too which has attempted to hamper me from my half marathon training I started this week.

So Saturday the sun came out and it was simply too lovely to pass up even though I had some minor remnants of chest and nasal congestion (still lingering). My gluteus and outer thigh muscles were sore from my thursday night session with my trainer which was an hour this time. Therefore, I sort of took it a little easier and reached the summit in an hour and 6 minutes as opposed to an hour.

Although it was warm down at sea level, when we reached the top there was a wind and it became cloudy making it quite a bit nippy out. We did not stay long and as soon as we cleared the first half mile from the summit (actually for the first time in 7 years I took a shortcut down the steep and rocky cable line WITHOUT POLES), we jogged/ran the rest of the way down for 2 and a half more miles.

I would love to write more but right now I gotta go and get out there - It is not pouring out there and sun breaks combined with light rain. I am behind by 2 hikes for the year (my goal is at least 1 a week).

Catch ya later!

5 months post surgery - Hitting the Wall

I have actually had a remarkable recovery, in the best shape of my life probably, and was looking forward to my best performance yet at the big climb this year (where I would race up 69 flights of 1,311 stairs with an elevation gain of 788 feet).

The first 2 years I chose to be in the untimed climbing division because I feared I might get knocked down or have a more difficult time with my poorer balance. However, it proved to be pretty safe and I felt incredibly great after my 2007 and 2008 climbs where I timed myself with a watch. Further, I had a great run and felt strong on the climb just 5 and a half months following my 2007 surgery. I seemed to just keep getting better and on a roll. Therefore, I figured it was time to step it up and join the ranks of the more serious climbers racing and timed.

That worked great and I felt I did even better last year but I goofed up on using the timing chip and crossed back over the finish line before turning in my chip to wait at the top of the stairs for my husband. Of course that messed up the results of my time exponentially! So this year I was all set with how to properly use the chip.

I trained on the stairmaster for a certain pace with the goal to finish in 11-12 minutes. In practice, the stairmaster is easier with no elevation gain so I was able to finish 69 floors in under 10 minutes. To get my lungs adjusted to the elevation gain I had been doing some hikes of a local mountain since January.

Then the unthinkable happened......I got sick 2 days before the event. :( The week prior, my mother-in-law and I had been out to the National Institutes of Health where she picked up some bug which she thought at the time was allergies. She left last Monday and at home she got worse coming down with laringitis. So she seemed to catch something going around which was more than allergies.

I thought I lucked out but then friday afternoon I became exhausted which later developed into a sore throat and body aches that evening. I started pumping zipfizz, airborne, and theraflu cold and sore throat combined with rest to try to be well enough for Sunday afternoon.

I awoke Sunday dizzy but felt ok on the ride over. Yet I just walking the block up the hill to get into the building embarassingly left me a little out of breath. LOl I was wondering if our team member David had noticed and if he was thinking "My God! This lady is already pooped out hiking up a city block. How in the heck does she think she is going to run up 69 flights of stairs?"

Anyhow, when it was time to line up to go to the start, I grabbed a couple swigs of water. By the time we took the escalator down to the first floor, I already had cotton mouth with no water nearby to relieve it until I reached the 10th or 20th floor.

I was the first person on the team to start and within the 1st 10 floors all 3 trainers had passed me. Team members David (the top finisher on our team with a time of 12:05) and Brett had passed me by but I cannot recall exactly where. At floor 10 I was reminding myself to settle down and just keep in the pace that I practiced - easier said than done. I just did not feel right at all. It was kind of like when you take off on a 20 mile journey before you see the next gas station and you realize the needle is below empty. So you just hope that the gas in your reserve tank is enough you to the next station.

No matter how hard I tried, I just felt slower and not as strong as I had in previous events - did not feel on top of my game. I was already pretty depleted by the time I reached 35 floors. My lungs burned and my muscles felt like lead. I had to grab water at 3 of the stops and my body taunted me to stop and rest. At that point I seemed to not care anymore about my time but just wanted to finish. I did not stop but only slowed enough to grab a dixie cup of water and toss is in the trash a few steps up.

In previous climbs I would be hooting and hollaring to pump people up as we reached the half way point, 20 floors, 10 floors, and then the last flight. Not this time! I needed to conserve every ounce of energy to just breathe and move my legs. There were a couple ladies I was with in the end. I believe one passed me and I honestly cannot remember if I passed the other on the very last flight. There was no last dash of energy for a sprint to the finish. I was spent! I had already hit the wall by the 49th floor and tried desperately to hang in there for 22-23 more floors. It was a relief when I saw the sign posted 10 more floors, 5 more floors, and then last flight.

Exhausted and gasping when I crossed the finish line pad, I haunched over trying to catch my breath. It was probably about a minute that I remained like that until I recovered enough to pull myself back up to standing, got a bottle of water, and then pulled out my camera to catch the rest of the team.

My time was disappointingly much slower than what I anticipated (14:54) but it was fun nonetheless. I had a great time on a fantastic team with a wonderful bunch of people and a very meaningful cause. Further, I think this experience was really good for me to go through as I am preparing to climb Kilimanjaro this year. That total feeling of hitting the wall I could not exactly emulate when going for a run. It is hard to explain. I know from watching movies of climbing and reading stories of climbing expeditions and even talking to climbing friends that they reach that hitting the wall feeling where it becomes very mental to keep yourself going. I wanted to know what it is like to reach that threshold and have an idea of what it will take to get past it. Now of course this is a very poor simulation where a few minutes in a hot stairwell cannot even compare to hours out in the cold and probable wind at altitudes the human body was just not meant for. But at least I got a tiny taste of what I will need to condition my lungs and muscles to push past.

All in all, I suppose that is not too bad of an accomplishment exactly 5 months to the day post a major brain surgery on 4 tumors. Now my next event to tackle is to run the Seattle half marathon in June. I am a little discouraged and antsy to delay training as the bug blossomed into a full borne head/chest cold. Yesterday and today were incredibly beautiful days. I took the dogs for a 5 and a half mile walk last night. But today I woke up with a sore throat, sore back nasal passage, chest congestion, leaking eye, runny nose, and I am just wiped out! I will even have to miss water aerobics and another strength training session at the gym. :( So I am taking the day off to hopefully heal fast. I would love to be recovered and back on the trail this weekend.

Be Golden

Gold's Gym Big Climb team "Be Golden" at the Big Climb event of the Columbia tower in Seattle, WA. Sunday in partnership with Gold's Gym eastside (Bothell, Redmond, and Issaquah), I led a team of gym employees, members, family, and friends up 69 flights of stairs in the tallest tower in the city to raise money for the Leukemia and Lymphoma Society.

Our team theme, "Be Golden", was inspired by the memory of my dear friend Skip Sand who passed away from a long struggle with Chronic Lymphocytic Leukemia in October, just a week before my brain surgery.

Visit our team website Be Golden With Gold's Gym to read the wonderful summary my sister wrote describing our team theme and tribute to the life of Skip and our grandfather taken by the blood cancer Myeloma in 2006.

Congratulations to everyone who made it to the top and thank you for helping us to improve the lives of those affected by this disease!

Click Be Golden at Big Climb 2010 to see more photos of our team at the event!

Back to the NIH

To catch any new readers up to speed, I am a participant in a natural history study of NF2 at the Nation Institutes of Health in Bethesda, Maryland (United States). I will be closely watched and followed medically to monitor/observe the growth of my numerous brain and spinal tumors to study their growth rate and possible triggers. Knowledge of such information can help reseachers to problem solve a solution to slowing down or stopping tumor growth.

The study will last 5 years where I and several othr NF2 patients in the country will be followed up every 6 months with MRIs, blood samples, eye exams, swallowing tests, gait analysis, and other possible tests related to symtoms and side effects of the tumors or treatments.

My first visit was last August and so now I am back again. We flew all day yesterday (leaving Seattle at 8:30 am and arriving WADC at about 4:30 pm). Then we waited for the NIH shuttle ro take us into Maryland - and had to sift thu tush hour traffic.

This morning bright and early was mt first appoiuntment at phlebotomy/ TY`It was the absolute fastest and best blood draw I have ever had which includes 17 years of constant pokes due to the cancer and then NF2 diagnosis. No numbing of my hand, heating of my arms, nor anesthesiologist was neededec.

I am at the eye clinic now waiting for my eyes to dialate so the doctor cn look at my cataracts. So I apologize for any typows and spelling errors as I cannot see right now. I can just barely read the lettters on the keys. I definitelt am unable to read what I am typing. Therefore, I am going to sign off before this is just a post of unreadabler garble gook.

4 Months Post Brain Surgery

Optimism Meets Opportunity

A pessimist is one who makes difficulties of his opportunities and an optimist is one who makes opportunities of his difficulties.

Harry Truman

Wednesday I spent a sizable portion of the day trying again and again to deliver a message with important event info to my team for the Big Climb next month. Each attempt and change frustratingly produced an error message as undeliverable. Then when I thought I could not be anymore annoyed, my session timed out and the message I spent so long composing disappeared from the screen entirely. Mentally exhausted, I complained in an email to my sister and sort of to the event coordinator.

I got an immediate response as to the source of the problem which gave me relief, I accepted, and I determined to use a better way of communication.

My sister also wrote back shortly and reminded me that important messages I should compose in a word file which can be saved (and which I really should have known better from losing countless emails in the past!). It was a good lesson of a productive habit I have gotten very lazy at which is crucial to being an efficient leader, areas in which I would like to develop. Further, I agreed that it was useful for me to learn these little glitches myself so that I can assist anyone else on the team who may encounter the same frustrations.

Later, I went for a 5 mile run with the dogs before my weekly personal training session. I was so tired on Tuesday from the 6.5 mile run on Monday that I had to completely take a rest day off missing water aerbics. I forced myself to get out during a late afternoon sun break Wednesday to run with the dogs. The challenge created an opportunity to warm my body up and get it ready for training in another couple hours.

Still fatigued from consecutive long runs and elevation hikes in a row, I reminded myself that the burn in my muscles was an excellent simulation for preparing to climb Kilimanjaro at an altitude where the lower oxygen levels will exhaust my legs quickly. Further, the longer I ran would condition my lungs for the cardiovascular strain of oxygen deprivation which occurs when exerting oneself at high altitude.

On the 2.5 miles heading back to the truck it started to rain. A groan initially played in my mind as it was a cold 46 degree NW rain. However, the sun was still shining and we were enveloped by the most dazzlingly array of color in the surroundings - surreal. Then the most brilliant rainbow I have seen in a long while shadowed by a fainter second blazed across the sky accompanying us on our entire return trip!

What an opportunity rewarded me for pushing through the challenges of the day!

Working Hard for the NF Community

These pictures of course are from last summer with my shorts and running singlet on. It has been nice and sunny with the absence of snow at the lower elevations. However, the weather is not that warm that I am running around sleeveless and baring my legs.

So Sunday I officially registered for the Seattle Rock and Roll 1/2 marathon to take place on June 26th. I am honored to announce that I will be running as part of the mighty NF Endurance team raising research money to end Neurofibromatosis. My fundraising page is to come soon and I will happily wear ribbons in memory and honor of my sponsors and their loved ones. (last year in the Eugene marathon, I wore ribbons with people's names on the back of my jersey and later made keepsake bookmarks that I sent them for Christmas; ah correction - I did the running and my sister and mother did the creating. I am not that crafty and now fumble with my fingers. I did pick out the quote though and helped do some stamping. :-) )

It was a very short recovery period following surgery and after 39 days I was back in action walking the Seattle half marathon with my sister. Thank you to my sponsors who donated seed money for our brand new nonprofit for NF2 awareness and research - the Help Stop NF2 foundation.

That was probably the first official day I started running again some distance. I didn't really mean to but it became necessary in order for me to catch up after all the bathroom and picture stops! I will write another post with the photos. So since, I have been running weekly 2-4 times a week. I have also started hiking season early (5 hikes and 2 snowshoe adventures) in preparation for our climb of Kilimanjaro in October for NF2 awareness (more later in another post).

I am also preparing and gathering a team to climb the Columbia Tower in Seattle for blood cancer next month. So between hiking and running, I have been trying to balance gym workouts and stair climbing. Phew!

Last week I dropped down to 2 days running (5.5 - 6 miles) and fit in a leisure hike to a lower elevation with Harley. This week an afternoon of snowshoeing, a record hike of 1 hour 1 minute to 2522 feet, a 3.5 mile run tuesday, a 5.5 run wednesday night, training and weights at the gym yesterday, and tonight I fit in another 5.5 mile run that I am in need of stretching for.

When I say I am working for you, I really am! I felt fatigued last night and did an easy 30 minute walk uphill with the dogs and was not as efficient nor accomplished as much as I would have liked to last night at the gym (oh but I did reach my desired 9 minute 30-40 second stairclimb to 69 floors!).

This morning I slept really late and my head and neck ached. I assume I am having a drug withdrawal from the eye medication I take to lessen double vision. After awhile, the medicine has bad side effects such as depression or moodiness or just causing me to easily stress over small matters. I do not like that and I was also running low on my prescription. So I tried taking less and less which seemed to go well for a few days but hit me hard today. I took IB profen before the run and still had a headache. After my run, pain throbbed all around my eyes and forehead. Interestingly, while I was running my head was not that bad - just the double vision I always get. Maybe it was because while thinking, I was trying not to concentrate on my tired legs or that fact that I felt like I was going to crap my pants for over 3 miles! (little tip - on running day do not eat cereal with 10 grams of fiber for breakfast; I thought that would be ok by the evening but apparently not!!!!).

Luckily 1.5 miles from my vehicle, the poop desire faded but was replaced by an acid reflux of the spicy thai food I ate for a late lunch! So there I was working hard for you to get in my run and finish despite a lingering headache, double vision, an incredible urge to poop, and continually regurgitating a nice wash of 32 oz FRS drink with leftover stomach contents of spicy ground chicken and cabbage. LOL I got on the trail after 5 pm and finished right at dark - just after 6 pm. What a way to endure, eh? ;-)

Danger of the Lack of Quality Sleep

Another great article by Dr. Mercola and of paricular interest to those fighting cancer, illness, and with tumors such as NF2. Lack of sleep can affect tumor growth and your immune system needed to fight them.

Lost Sleep Can Never Be Made Up

Researchers, however, will tell you that a sleep deficit can have serious, far-reaching effects on your health. Among them:

•A single night of sleeping only four to six hours can impact your ability to think clearly the next day.

•Good sleepers and poor sleepers experience about the same number of daily minor stressful events, but good sleepers are less disturbed by them. Poor sleepers experience life events as being more negative than do those who sleep well.

•Sleep deprivation can cause changes in your brain activity similar to those experienced by people with psychiatric disorders.

•Sleep deprivation puts your body into a pre-diabetic state, and makes you feel hungry, even if you’ve already eaten.

•Interrupted sleep can dramatically weaken your immune system

•Tumors grow two to three times faster in laboratory animals with severe sleep dysfunctions.

Click the title "Lost Sleep Can Never Be Made Up" link above to read the full article by Dr. Mercola and to learn what to do to get better quality rest.

Reversing Memory Loss

I know this will grab a lot of you with NF2 and other brain tumors or head injuries as memory loss and disruption in cognitive function is a very common side effect of these disorders. The following was taken by Dr. Mercola's newsletter today. I have included the link to read his full article if you are interested. Aside from the physcial health benefits, regular exerise is also good for your mind (especially the lot of us with brain disorders already).

Moderate physical activity performed in midlife or later appears to be associated with a reduced risk of mild cognitive impairment -- and a six-month high-intensity aerobic exercise program can improve cognitive function in individuals who already have the condition.

Each year, 10 percent to 15 percent of individuals with mild cognitive impairment will develop dementia, as compared with 1 percent to 2 percent of the general population.

Physical exercise may protect against mild cognitive impairment by means of the production of nerve-protecting compounds, greater blood flow to the brain, improved development and survival of neurons and the decreased risk of heart and blood vessel diseases.

Sources:

Eurekalert January 11, 2010


Archives of Neurology January 2010;67(1):71-9


Archives of Neurology January 2010;67(1):80-6

Click here to read Dr. Mercola's article discussing the connection between exercise and cognitive function.

Winner! Winner! Chicken Dinner!

Actually, chicken salad and bamboo ginger soup for dinner and that was not my reward. Yesterday, I reached day 15 on the South Beach program and passed the 2 week tough phase 1 elimiating carbs (including fruit) and sugar. In 2006 when Harley introduced me to the diet, I was skeptical. I tried it slightly but was never able to follow it all the way. Finally, I finished reading the book this year and took it more seriously. The science makes sense and I am not a fool so I thought I would give it a fair shot. My cravings for sugar and blood sugar fluctuations were getting out of hand and I needed some sort of control. The South Beach program seemed to be the ticket for me to invest in.

I will not lie to you. Following the program precisely is not easy! There is sugar in virtually EVERYTHING! It is hard to find dressings, condiments, marinades, any food put into a package, that does not contain some sort of sugar. It is really hard to eliminate it all together and thus there were some things here and there with 1-3 grams of sugar per serving but I tried my best to keep it at a minimun. Therefore, you will find that you need to do mostly all of your meal preparation. Even at Trader Joe's I found a nice convienent bag in the frozen isle of mixed approved chopped vegetables not acceptable. Upon reading the nutritional label, I discovered that a sauce or marinade was added which had added sugar and fat. Make it on your own and you can control what is being on your vegetables. It is also healthier to use fresh vegetables. Thus, I end up constant chopping, cooking, cleaning, and measuring out portions as Harley counts calories with his challenge program at the gym.

I also found it hard and limiting going out to eat anywhere on phase 1 because you really do not know what is being put into the food. How many grams of sugar are in that dressing? Is there sugar in the marinade for the meat? If teriyaki, you bet your bottom it is loaded with sugar. While it is possible, your choices are severely limited. We went out for Thai one day and I ordered a soup and a curry vegetable and chicken dish with no coconut milk added. Generally thai dishes with coconut milk add sugar in the recipe. I only know that from cooking it myself. It is often difficult to find an entre with both meat and vegetables. Often the choice is one or the other and vegetarian dishes almost always are loaded with carbs used to replace meat. :(

So back to my reward for a job well done.......

I probably over did it a little yesterday with the addition of carbs in phase 2 (steel cut oatmeal and a cup soy milk for breakfast, meatloaf for lunch which has either oatmeal or bread in it, sugar free chocolate pudding for a snack, a little too much lite cool whip, and an overabundant handful of dried apricots and another of dried blueberries, cherries, and craisens with peanuts). I was just so excited to make it through the 2 weeks and lose exactly what it tells you will happen (8-10 lbs or more in phase 1). I started out at 131.8 and yesterday morning (start of day 15, day 1 of phase 2) I weighed in at 121.8! :D Last Wednesday I had an electronic body fat composition done which was 20% at a weight between 124-125. This morning I gained a little back, weighing in at 122.6. But that is probably accounting for water weight which I had been expecting. No harm done though. I probably needed a little break day before getting back on track again.

So now at phase 2, I can add back in certain carbs again slowly. I can also reintoduce dairy items such as milk and yogurt. In phase 2, you lose only 1-2 lbs a week but the idea is to start getting your body used to a more normal healthful eatting cycle now that your insulin levels are regulated. You continue on this phase until you reach your goal weight with the objective to maintain that weight. The maintainence phase is phase 3 which you stay on for life and if you slide away to overindulge, you just shift back to phase 1 for awhile.

My goal is 123-125 which is the healthy range I have determined to be at. When a surgery or treatment comes up, that weight provides me a safe "cushion zone" of 10 lbs to gain or lose as the result of recovery (115-135). Thus, it is always my aim to stay within this range and maintain that magic number which I have for over 3 years. I will stay within phase 2 until I reach 120 which gives me a safe + or - 5 buffer to keep within the 123-125 range.

I decided posting my daily menu plan was kind of monotonous and boring as well as time consuming. Please write a comment if you would like me to post a couple days of the phase 2 so you get an idea of what it looks like.

I do want to tell you that it has been fun and I have learned to explore more healthy food options and try new recipes.

I never before ate edamame (soy beans) or radishes but discovered a very tasty and filling edamame salad. And I made the Chicken Larb Gai recipe I posted earlier with a little modification (cilantro). It was FANTASTIC and even better than at the restaurant! Harley loved it and it was all gone the day after I cooked it.

Other recipes I ventured with and enjoyed:

Oven roasted veggies with italian dressing (green, red, orange, yellow pepper, mushroom, frozen artichoke hearts - TraderJoe's, and either asparagas, zuchini, or red onion).
spinach stuffed mushroom caps
oriental cabbage salad
rosemary broiled king salmon
brocoli slaw/spinach mushroom baked eggs
lime marinated baked tillapi fish