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!