A Leader is a Dealer in Hope

I cannot believe this year is flying by so fast! Before you know it the Long Beach Marathon will be upon us on Oct 17th. This year I am once again serving as Team Captain for the Mighty NF Endurance Team! I just built my new fundraising page including a spiffy new photo collage for this year's event and wanted to share it with you all, its at...

http://www.active.com/donate/nflongbeach2010/Olivia

(You can always reach my fundraising page my clicking the collage on the left as well!)

I have had my heart broken too many times by this disorder. As you all know I have lost 3 family members, but I have also lost friends. Too many over the years to count. I often receive emails from all over the country, even the world, asking my advice as someone who has had this disorder in their family for so long. I do my best, and stay active in the community, knowing that these people I grow to love will most likely lose the battle much too young. Friends who are my age and just do not wake up one day. I am tired of waking up to find another friend has died, another friend has been told there is no more to be done for them, another friend cannot walk, or hear, and they live so far I cannot even be there to offer a hug. What I can do is tell their stories. By informing more people about NF2 we encourage more donations and raise more money for research. The best way I know how to do that is to run, and so I do the only thing I can.

I am setting a goal of raising $5000 this year. I know it sounds like a lot, but I truly believe if I put my mind to it I can achieve this goal. There are actual clinical trials for drugs that can potentially STOP TUMOR GROWTH going on right now! CTF is the largest private funder for NF research, so by running with them I feel I am doing the one thing I can to fight back. I have to do something, because doing nothing is just not an option anymore. I am asking all my friends and family to join me by donating any amount that you can. Every dollar counts, and together we make a strong team! Together we can actually make a difference and fight back!

Thank you so much to each of you who has taken the time to donate, volunteer, or just offer friendly support! Please feel free to share this link with as many people as you want, there is power in our numbers!

JT's First Run!

I banished another lazy day today with a sudden fabulous idea. I was attempting to lace up my running shoes and simultaneously read Perez Hilton when I noticed JT laying around in his pajamas at 11am. I told him to go get his running shoes, we were going for a run. His first run! He hopped right to it and before I knew it we were jogging out of the complex for a 2 mile jog around the block. He took off fast and burned out early as I knew he would, but constant encouragement and cheering kept him moving. I told him if we do this often he can run with me at my next event, and he says he wants to run a marathon! I have no doubt one day he will, and I will eat his dust! I left my watch at home but we made surprisingly good time, and in way under a half hour JT sprinted the last quarter mile to give a strong finish to his first run! Go JT!

We will be running the NF Walk at the CTF Patient Forum next month! Who's in?

Breathe

For the last month every breath I have taken has settled deep into my chest, weighing me down and crushing my every step. Everything beautiful seemed cruel and daily tasks became painfully redundant. The world stopped, and I wanted nothing more but to turn it back further into time when my son was a tiny baby full of promise and potential. Each night as I have tucked him in I've lingered just a bit too long at his bedside, planting kisses on his warm cheeks and whispering promises and prayers over his head. Today Tish and I took JT to CHOC to learn more about JT's brain tumor behind his right eye. Always a joy to be around, JT skipped into the MRI room and held his own sedation mask, pretending to sleep immediately and stealing smiles at the anesthesiologist. Everyone was smitten with him, his personality is infectious, and as he faded into twilight his hand dropped limply from mine.

He was heavily sedated this time around and struggled into consciousness, crying and shivering, only to fall back asleep sporadically over my shoulder. Time ticked by slowly and soon he sat up with that gorgeous smile, asking for a popsicle and apple juice. His tears already forgotten, we wheeled him across the hospital to see Dr. Loudon, his pediatric neurologist. Tish and I nervously sat passing the time as JT happily played on the floor. Soon it was his turn, I walked into the exam room and prepared for the worst...

Dr. Loudon swooped in with a smile and a firm handshake. I immediately asked what was going on with his eye, and Dr. Loudon looked at me completely perplexed. His eye? What about it? I asked if he had reviewed the MRIs yet and he said he had, and what was I talking about. I said his neuro ophthalmologist diagnosed him with a brain tumor behind his right eye last month and Dr. Loudon immediately brought us back with him to his computer and reopened the scans. Tish and I stood there awkwardly, stealing meaningful glances and assuming that at any moment Dr. Loudon would turn to us and say oh there it is. Instead, after taking a very thorough look, he turned and said he had no idea why his eye would be bulging because there is no tumor. He then suggested I find a new eye doctor.

What could I even say? The moment was ridiculously anticlimactic. I had a list of questions about tumor fighting drugs and radiation therapies, and instead was being referred back to a normal pediatrician to test for simple non-tumor related eye issues. My heart was exultant, but my head wont let the news sink in. If I believe it is true am I going to have my heart broken again? I feel vulnerable and suspicious, jaded by years of bad news I don't know how to be grateful for amazing news. We left the building and walked toward our van, laughing and chattering as though nothing had just happened. Nothing happened, the world never stopped, it was there all along, and suddenly I can breath.

Costume Benefit a Success!

Saturday night I dressed up as a french maid and tottered on my biggest heels to South Forty for the CTF Costume Benefit! I like to think that fun was had by all, and we raised $211 for CTF!! Groovy Myra won the Most Creative Costume, Masked Anthony won for Scariest, and Gypsy Willie took home the Sexiest Prize! Thank you to all my awesome friends who came, drank and learned a bit about NF!

Now that I have the party behind me I am focusing on the marathon, which is exactly one week away! I'll be leaving home Friday morning and working hard all weekend to run the NFET expo booth and support the team in any way I can! I'm looking forward to having a brand new medal to hang over my bed!

Bebu Moto Moto 433

Myra, Jolene and Anita as the Pink Ladies,
there's Paul in the back and George Lopez snuck in for a shot!

D-A-R-C-I lol

Fred & Willie with Miena and I

My BFF Adria as Erykah Badu!

Darci, Adria, Beth, Sharice, Ann Marie and Daniel

Jarrod, Corey, Paul and Anthony

Back to Basics

For the last week my blog has sat empty, hiding her face in shame. I just can not rectify quitting the full marathon with myself. At night I toss and turn, unable to see myself finishing a half in my mind's eye, instead I remember the split off point at Long Beach last year where the full marathon runners wearily continued on while us half marathon runners sprinted to our easy finishes. Back then I thought those big-calved people in nike running shorts downing clif shot bloks were absolutely insane, and by the time many of them finished I was at Boston's slamming potato skins and beer. This year is different, I am different, and I have to run the full marathon.

The naysayers started in on me several months ago, and the doubt manifested itself in my sub-conscious, rearing it's ugly head in the depths of my longest runs. Never before had I stumbled to a halt mid-mile with trail left before me, but it seemed like every training run I did I took on the weight of a marathon and forgot to focus on the mileage at hand. How did I allow myself to look away from the horizon? Usually I know what to tell myself to keep running past the breaking point, but my voice was drowned out by my pulse beating ever harder in my head as my mileage climbed higher. No music, no complex issues in my life I need to work out, no time to find a challenging new trail, and a pile of laundry awaiting me at home just made every run feel lethargic... slow motion... even boring. I longed for the last mile as I started the first, and forgot to enjoy everything that happened in the middle.

As I have rested my knee and focused on shorter runs over the last 2 weeks I have realized how much I missed running, and why I set out on this journey to begin with. I can't just give up, I have come too far and worked too hard, I expect more from myself then being a quitter. Come race day I will cross that damn finish line at 26.2 miles. I may have to run and walk intermittently... but my yellow CTF jersey and I will finish!

(and if I ever try to quit again you people have to slap some sense into me!)

CTF Benefit Costume Party!!

5 weeks to 26.2!

As most of you know I was born with Neurofibromatosis type 2, a genetic disorder that causes tumors to grow throughout my brain and spine. I've had numerous surgeries and radiation, and lost 3 family members to the disease, including my Mom. My son JT has NF2 as well, and is my hero! At age 6 he is already visually impaired, but he never let's it stop him! He is obsessed with breakdancing and Michael Jackson, and uses sign language to help me wherever we are at.

Last year I joined the NF Endurance Team to raise funds for NF research and fight back! The NFET raises awareness and research dollars that enable treatments and a cure for neurofibromatosis.This year I am serving as Team Captain at the Long Beach Marathon, and am trying my hardest to bring as many people affected by NF together as possible for a day of running and celebration!

The Long Beach Marathon is now just 5 weeks away, and I will be completing my first 26.2 mile full marathon! If you have read my blog you know I have been struggling with the heavy weekly mileage during training, and have had doubts. I was thinking this morning that training for this marathon is so much like having NF2! It is a constant uphill battle, and I need to be prepared not just physically, but mentally. When I prepare for a surgery I go through a very similar process, working out to increase my muscle strength, and controlling my emotions in the face of an impending struggle. With at least 5 serious surgeries in my past, I know I am capable of running this marathon! After all, it's better than brain surgery!

So as I continue to train, and push forward, I want to thank all of you who have taken the time to donate on my donation page or volunteered to help us out on race day! In a time when all of us are being more careful with every dollar, it means so much to me to still see people donating to such a serious cause. CTF is making great strides in the fight against NF, funding research programs and clinical trials as well as promoting awareness! I am proud to be a part of such an amazing charity!

My fundraising goal for this year is $5000, and as of now I have raised $1,830! So right now I want to ask each of you to consider making a donation and helping me get closer to that goal! Every dollar counts, and I greatly appreciate any size donation. Donating is simple, just CLICK HERE! If you are unable to donate online and would rather write a check, please email me and I will get you set up right away.

4 Months to 26.2

I want to sincerely thank those of you who have already donated to CTF on my Active Giving page, and really gotten the ball rolling! We have already raised $400! We have 4 more months to reach my goal of $5000 for this year. I've been going on my long runs and really focusing on training, and when I feel like I can't take another step, I remember that I am running for all of you who have supported me this entire time.

Next month, on July 26th, I will run the half marathon at the San Francisco Marathon and am excited to run across the Golden Gate bridge! San Francisco holds special meaning to me. My Gramps has lived in the Bay Area since long before I was born, and the best part of every vacation in my childhood was visiting his beautiful home and spending time with him and my Grams, and now Diana. My Gramps has been a constant source of stability in my life, and will be at the SF Marathon to cheer me on! I cannot wait to see him at the finish line. We have agreed to dedicate this run specifically to my Mom, Kari, who we tragically lost a few years ago just 3 months before her 40th birthday. She was 39 and lived in a nursing home, unable to care for her most basic needs and completely deaf. On July 22nd she would have been 44 years old. When I run on the 26th I am not just running for her, but also for my Gramps, who has suffered the loss of a wife and 2 children at the hand of NF2. Nobody should have to live through that much pain in one lifetime, and still he handles it with dignity and grace, always caring for everyone around him and wearing a smile on his face. He sets the example for me that no matter how unfortunate a circumstance, life carries on and holds happiness for us all.

CTF is making great strides in the fight against NF, and even specifically NF2. All fundraising dollars donated on my page are specifically earmarked for NF2. A specific example of how this money is used is CTF's current funding of a clinical trial testing the efficacy of a drug called Lapatanib on NF2 vestibular schwannoma. For those of you who have been on this journey with me over the years, you know it is amazing that drug therapies are now visible on the horizon for NF2 patients!

CTF has given me a focus for my energy, a way to feel as though I am really making a difference and not just waiting for this disease to take over my life. CTF is helping me to fight back, and I am asking all of you to fight back with me by donating on my Active Giving page, http://www.active.com/donate/nflongbeach2009/Olivia

Thank you for your support and *Never Give Up*

Crossing the Finish Line!

My... abs.... hurt... I have been so focused on them over the last week they just screech everytime I take a step. Adding fast sprints to my shorter runs has really given my training a much needed kick in the ass. My girlfriend Jolene and I have started doing some runs together, and it is so refreshing to have company and not be the only lunatic flailing down the road. Today we're running the 3 miles to the gym, weight training, then running back and doing yoga at my place. I'm actually looking forward to it, and know I will be deliciously sore tomorrow. Even now my mind's eye is distracted, tempted to put on my shoes and just run straight to the top of Day Creek where I can look out over the entire city and then enjoy the windy jog back down. I just have to avoid the black hole of the sofa, and stop taking little "vacations" from my routine for every tiny reason, and the next thing I know I will be crossing the marathon finish line in Long Beach and partying on the beach without hiding under a cover up!

As CTF Team Captain I'm encouraging all of you to join us in Long Beach and get running! We have a team of 433 Ironworkers running the 5k, and a team of local Mommy's walking the 5K in tiaras, a couple of friends are signing up for the 1/2 and full, and there will definitely be an after party so we can down a few much deserved ice cold beers! If you are interested then sign up here with the NF Endurance Team, then go here and sign up for your event at the race registration website! If you plan on running the full in around 5 hours contact me, I would love to have someone to run with, so who wants to cross the finish line with me?

Fundraising Time!

With only 5 months until I run the full 26.2 mile marathon in Long Beach for CTF, I am officially kicking off my 2009 fundraising campaign! Last year we raised over $3000, this year CTF is earmarking all the funds I raise specifically for NF2, and I have a new goal of $5000! As a community we can reach that goal and truly make a difference in the fight against NF2! Check out my brand new Active Donation Page and let me know what you think!

Stay tuned and check back here often for updates on the fundraiser, my running, and new contests to raise extra money for the cause!

$500,000 for NF Research?

A CTF marathoner has reached the top 10 in the Lenox Extra-Mile Hero contest! The winner gets $1 million to split with the charity of their choice, his choice being CTF! The Children's Tumor Foundation is the charity I have been running for to raise funds for NF research. Neurofibromatosis is more common than Huntington's Disease, Cystic Fibrosis, and Muscular Dystrophy combined! It is a great organization, so please visit the link below and vote for Pete Dingeman, then pass the word on! Let's show everyone how strong our numbers are! Only one vote per email please!

http://www.lenoxhero.com/Voting.aspx

Olivia

Fabulous Lazy Mommy?

Is it just me or has there been no running update for a while? I mean am I not the Fabulous RUNNING Mommy? Well I have been not-so-fabulous this week. I have been just relaxing, doing the bare minimum on my chores and feeding the kids poptarts for breakfast! Granted they get a piece of fruit and protein shake with that, but in this house poptarts are usually unheard of! I even had a little eel last night on my sushi! Yes I am still vegetarian, but come on... eel? That is not a freaking animal! I step on spiders so eating eel is not a huge leap. So I have been just getting by this week, and I am ok with that!

However... next week will be all about punishment! I'm starting the 200 situps program which will help me to be able to do 200 consecutive sit ups in 6 weeks! I will be in a 2 piece this summer, if I have to beat my belly off with a stick! I'm going to jump right back in with my running, with 1 interval and 1 mile repeat session a week, with a long run of course on Sundays. I am currently averaging an 11 minute a mile pace on my long runs, and before I distance train for the full 26.2 mile marathon I want to get closer to 10 minutes a mile! I will get there, I just have to buckle down, because as I have learned "Pain is Temporary, Pride is Forever!"

Las Vegas Half-Marathon 2:39

I'm back! I have piles of laundry and my legs are so tight and sore! The race was awesome, I actually preferred the course over Long Beach. In Long Beach there were huge stretches of beach, just sand and water, nothing to look at or hint at how much further. In Vegas I know all of the hotels so I could set mini goals and have a general idea of how far I have gone. I made one really big mistake... I drank WAY too much water trying to hydrate and had to wait in line for a porta potty on the course! My official chip time was 2:39 which really completely bums me out. I want to improve at each race, not get slower! I saw the clock as I came down the final 3 miles, and pushed hard to make time up. My lungs were burning, legs pumping, even my arms were screaming at me to stop. I threw all of my little self forward and just pushed chanting to myself "Pain is temporary, Pride is forever!" I was like freaking Mel Gibson or something... ok maybe not but I felt like I was flying down that last mile. Every time I thought I was there it was just a little further, then I saw volunteers throwing their arms up and I saw a cluster of bright yellow CTF shirts and my babies waving at me from the sides, and I crossed the finish line in what felt like a blur. I received my medal and took my finisher's photo, and met my family who gave me tons of love and hugs. My Dad had promised to quit smoking when I finished the race, so we crumbled up his last cigarette and took pictures with our patches: his nicorette and mine for muscle pain!

Pictures will be up soon, I have to wait for my Dad to send them, I don't have a camera right now!

I Ran Long Beach!

I'm home already! It was a long 2 days!

The Hyatt was so gorgeous and we had a beautiful view!

It felt great to escape for a couple of days with Paul and meet the Children's Tumor Foundation NF Endurance Team! All of the people I met were absolutely wonderful, and it was inspiring to see so many come together for a common cause. I was the only person with NF2 there, but CTF did an awesome job organizing everything, and everyone was so determined and had only good intentions.

I met this girl Jenny who has NF2 but was told she has NF1 and NF2, which isn't really possible! She is the sweetest thing and I will definitely be keeping in touch with her!

The course was beautiful and I passed the time thinking about the long NF2 journey so many of my family and friends have suffered through. I realized that without NF2 my life would be completely different, and I love my life, so what is is what is meant to be. I prayed and envisioned my Mom hugging me at the finish. I know she would be so proud. No, I don't believe she was watching. I can't stand to think she may still be attached to this life, she is somewhere so very far away from all of the pain of this world. But today a small piece of her ran 13 miles!

I have video of my "big" finish and will get it posted as soon as I can, blogspot wont let it load right now!



Paul was incredibly supportive, as always, and helped out with anything he could. He really motivates me to be a better person and while I was running I found myself praying. I was just giving thanks to God for all of my blessings, and I know Paul is a wonderful blessing in my life. He's pretty lucky to have me too of course! He is out helping a friend right now but has promised me a leg rub, glass of wine, and Desperate Housewives tonight! How lucky can a girl be?

My Daz came!!! He is really into sports so I loved knowing I made him proud by finally being athletic at something! I didn't even trip! He seemed really interested in the race and said 19,000 people raced, including an 80 year old man!

To top it all off Paul bought me a beautiful cloche with a bow at the hat store! What did you all really think I had left my girlie side behind?

Thank you so much to everyone who donated and supported me! This is the beginning, not the end!! I plan to run the half marathons in:

Las Vegas, December 7, 2009
Surf City Huntington Beach, February 1, 2009
Rock'N'Roll Marathon San Diego, May 31st, 2009
San Francisco Marathon, July 26th, 2009


I will only actively fundraise once a year, but donations for NF2 research are always gratefully welcomed. You can visit CTF for more information!

2:37 baby yeah!

I did it! It was fun and hard and sweaty but I ran 13.1 miles and didn't stop the whole way! More details and pics to come!

NF Endurance Team Newsletter!

I was recently interviewed for the newsletter, check it out!

Recently on my Mom's group we were sharing our pictures of ourselves as children, here is me at age 3! I know, Mica looks just like me!

Turning Doubts into Challenges!

So today was my cross-training day! I chose the elliptical machine, and while it definitely broke the monotony of consistent running I couldn’t help but glance longingly at the treadmill every few minutes. The elliptical machine can be wonderful for toning and weight loss, but it can never replace knowing you have covered a specific distance using nothing but your own body. I am very pumped up for my 6 mile run tomorrow morning with my friend Jennifer! It is my first time running with another person and I hope we push each other to our limits!

Since there are only 10 weeks left my diet is going to get a bit more intense. I don’t mean diet as in fad diet, I simply mean my daily meal plans. I aim to always eat this way, but pizza happens! I’m going to share a typical day for this running vegetarian:

Breakfast: Luna Bar, glass of almond milk with protein OR my Awesome Smoothie
Morning Snack: piece of fruit
Lunch: PB&J and raw broccoli
Afternoon snack: handful of goldfish crackers, raisins, edamame
Dinner: a full vegetarian meal, usually including a soy product, whole grain, veggie, cheese, and minimal fat
Dessert: piece of dark chocolate and/or small teeny tiny glass of red wine
In addition: 4 liters of water throughout day, a horse size multivitamin, and propolis (which I will explain in a later post.)

As of tonight there are exactly 10 weeks left until the Long Beach marathon. I am filled with mixed emotions, excited first and foremost! I cannot wait to cross that finish line and know that I have come from barely walking after numerous spine surgeries, to running 13 miles and for a good cause. I am also very nervous, what if I fail? What if I am hurt while training and have some sort of anti-climactic end to this amazing journey I have embarked upon? What if I let everyone who has donated to CTF in my name down? Then I remind myself that there is always a way around every challenge. I have to use positive imagery and picture myself completing this trial. I WILL finish. In 10 weeks I will run across that finish line holding in my heart the memory of every family member and friend who has suffered in the grasp of NF2. I will have brought us all 13 miles closer to a cure. It may not be much, but it is all I have to offer.