Japan Part III: Back to Tokyo 3.4.17-3.7.17

After Osaka, we took the bullet train back to Tokyo for more meetings and speeches. This time we stayed in the Asakusa ward. This was old Tokyo of the 1600-1800’s and very different than modern Shinjuku, but still just as crowded. When we got out of the subway, we were quite stunned with the hordes of people. We had two rolling luggage, two duffle bags and eight pounds of See’s chocolates to give as gifts. We had to maneuver around all these people for a half mile to our hotel. It was one heck of a long, sweaty walk! Later in the evening, Brian and I took a walk when the streets were empty. There was an orange glow from the lamps and it looked like we were walking in a movie set. It was very pretty and so different than earlier.

The 6th Annual Japan MS Symposium was in perfect timing with our trip. This is one of George’s biggest events of the year and he added us to the itinerary. Because George was very busy with setting up the conference, he sent Mr. Takeshi Kono to escort us to the event. George is like our uncle, always worried about our well-being and looking out for us the whole time.

The MS Symposium was attended by neurologists, researchers, the MS Friends Association Tokyo Chapter, and staff from Sanyei Corporation. Also, Mr. Ueon and Mr. Kawanishi from Mitsubishi-Tanabe Pharma in Osaka came to the event.

The key note speaker was Dr. Kondo and even though he spoke Japanese, we could follow along because the slides had familiar pictures and data. Sadly, Brian and I are much attuned to reading Gadolinium enhanced lesions, T2 lesions and black holes on an MRI. We know all about JC titers and the chance for Progressive Multifocal Leukoencephalopathy. And we are very familiar about the platform ABC drugs and the other dozen drugs now available to treat MS, plus their side effects.

What was new to us were some of the cutting edge research presented by three recipients of a JMSS Fellowship Award. The researchers talked about biomarkers and a drug discovery that can help with walking. They showed a video of a disabled mouse induced with Experimental Autoimmune Encephalomyelitis (mouse equivalent of MS) dragging his hind legs. They showed a second video of the same mouse, running around, fully recovered after taking the drug. Fingers and toes crossed this can be translated for humans. Well, maybe just my fingers because I can’t move my toes well anymore.

As each presentation went on, the time allotment for Brian and me got shorter and shorter because the other speeches went a bit too long. We worked with our interpreter, Ms. Kazumi Yoshida, to cut our speeches on the fly. That was perfectly fine with me as it was late in the afternoon and I was getting tired.

Translation for this event was different than Osaka. I had to stick to the script. I read one paragraph at a time and paused for Kazumi to translate. I like to make eye contact as I speak and at times I did not follow word for word, and I apologize to Kazumi for not following the exact words! Nevertheless, I felt pretty good about the speech. It helped that Kazumi enacted the same emotion during her translation just as I expressed.

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Japan Part II: Kyoto, Hiroshima, Osaka 2.27.15-3.3.17

The next day after the marathon we took the 270 km/hr Shinkansen from Tokyo to Kyoto. The ride was under 3 hours and ultra smooth.

We rented a nice Airbnb room and the apartment complex had a mini shrine outside the front door. It was prescient of the many, many shrines and temples we would see in Kyoto. We spent about a day and a half of touring Kyoto. We did have temple fatigue, but when you have this once in a lifetime opportunity you have to keep pushing. We enjoyed the peace and tranquility of it all. We could move slowly, think clearly and live in the moment. It was very different from our hectic lives at work.

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Japan Part I: Tokyo and Tokyo Marathon 2.22.15-2.26.17

Our trip to Japan was so different than any other vacation we have taken. We were deeply immersed in the culture because we met a lot of people and made new friends. This was all thanks to Mr. George Nakajima, Secretary General of the Japan Multiple Sclerosis Society (JMSS).

 

Planning for Japan started a year in advance. I contacted JMSS in April 2016 because I needed help getting into the Tokyo Marathon. The race is highly impacted like London and New York City. You can enter via lottery, join a tour group, or fundraise for a charity. George contacted the marathon organizers and pled my case to pay for a guaranteed spot, but they would not budge. So I went with a charity and ran for the Japanese Para-Sports Association. I am glad we decided to run for a charity because it turns out that 321,459 people entered the lottery and there were only 26,370 spots available! The chances for Brian and me to both get into the marathon were slim to none.

 

During the year, George and I exchanged over 200 emails. He helped me immensely with the logistics of travelling in Japan, and he also orchestrated several meetings for me to present my story. I do get nervous when I speak in public, but I was a lot more anxious about Japan because I have zero knowledge of the language. My sweet coworker, Kinuko Kanda, coached me a bit before leaving for my trip: good morning, hello, thank you very much, and where is the bathroom. I was even more worried because my speeches started and ended with some Japanese pleasantries because I wanted to show respect, “Konnichiwa! Minasan ni oai dekite ureshii desu. Minasan ogenki desuka? Cheryl to moushimasu. Douka Yoroshiku onegaishimasu. Arigatou gozaimasu. Kyou wa ganbarimasu.” Kinuko spoke the phrases into my iPhone and I listen to it over and over on the 13 hour flight from LA to Tokyo.

Upon arriving at Narita International Airport, we were greeted by George and a huge welcome sign! At first I was not sure if I should bow to George, shake his hand or give him a hug. I did all three and so did Brian. George did not seem to mind. After all, we were already like old friends!

We checked into our hotel in the Shinjuku prefecture at 4:00PM and by 6:00PM, Mr. Hideki Saito from Nippon TV was there to interview me! We filmed inside our tiny 194 square foot hotel room. It was cramped with 5 adults, but we had fun. “Tokyo Marathon. Ganbarimasu!” My interview aired on Saturday afternoon, the day before the marathon.

In the days leading up to the marathon, we tried to acclimate and fight jetlag by keeping busy and touring as much as we could. We visited many shrines, temples, museums, shops, prefectures and Starbucks. Yes, Starbucks. Our friend Richard Brook collects Starbucks gift cards and he has really turned us on to collecting them, too. In Japan, you cannot just take the cards for free. You have to put 1,000 yen (about $10) on the card and you can only spend the money in Japan. So, we were highly caffeinated for the trip, which may or may not have helped with jetlag. It truly was a cultural experience. The stores have different designs and artwork; they have Japanese-specific specialty drinks; and the Japanese flock to the stores, from students to business men to women clad in kimonos!

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White Continent Marathon 1.31.2017

If I did not have pictures, I would not believe Brian and I actually ran a marathon on Antarctica. The whole experience was surreal. At times I felt like I was floating in the sky watching myself as in a dream. I suppose I was loopy due to jetlag (12 hours of sleep over 3 days) and dehydration. Or perhaps it was the mysterious polar vortex that gave me the lightheaded feeling. In any case, we ran in Antarctica!

Marathon Adventures tour group coordinates the White Continent Marathon.  I chose this company over the others because Marathon Adventures flies to Antarctica from Chile, rather than taking a nauseating 10 day cruise from South America through Drake Passage to Antarctica.

Together conquering one marathon at a time! 

We stationed ourselves in Punta Arenas, Chile for 8 nights from 1/28/17-2/5/17. The plan was to fly on the first opportunity of good weather. I was very anxious about this. I’ve read stories where a group was set to fly, but waited in the airport for 11 hours because weather suddenly turned bad in Antarctica. Another group was within 20 minutes of landing on Antarctica and the plane had to turn back to Punta Arenas because the weather unexpectedly changed. Then another group was in the middle of running the marathon and had to be pulled off the course because the temperature was dropping dangerously low. They all eventually ran the marathon, but I did not want to have to deal with the drama.

Our first chance to fly was at 3:00AM on 1/31/17. It pushed back to 9:00AM which worried me since it would mean running in the afternoon when MS fatigue usually kicks in. We arrived at the airport at 7:00AM and it was very relaxed. We were able to pass full sized water bottles through the Chilean version of TSA. Or maybe liquids were not allowed, it’s just the security agent was busy chitchatting with her coworker while our bags went through the scanner.

 

Our flight was only delayed by 30 minutes and we were in the air before 10:00AM. I still did not want to believe we were on our way to Antarctica. I did not want to get excited until we actually landed.

With about 30 minutes to landing, everyone started changing into their running gear. I had to negotiate putting KT Tape on my feet and Brian prepared his three layers of socks. We also had our pre-race peanut butter Perfect Bars and coffee. Before I could finish strapping on my ankle-foot orthotic, the plane skidded onto the Great White Desert.

Antarctica was not what I expected. It was all black rock and dirt with patches of snow on the hillsides. There was no place for me to make a snow angel! It was not white and pristine, but I suppose it is summer in January and most of the snow had melted. There was also a lot of moss and lichen. I did not know it would have flora. The temperatures were in the 30-34F range with a 15-20 mph steady wind that made it feel like the mid-20s. I anticipated running closer to zero degrees, so I was pleased.

Are we there yet?

It was almost a two mile hike from the airplane to base camp. We had to carry all of our gear and that was hard. A few of us feel that should have been added to the mileage count for the marathon! When we arrived at base camp, the sleeping tents were still being set up and the porta-potties were not ready. A bunch of us just took the pee buckets and hid behind tall rocks. There was big hurry to start the race and we did not have much time to double check our race gear. It didn’t matter, I guess, since the race course would pass base camp 12 times.

Chilean Research Base
Base Camp
Chinese Research Base

The course was out-and-back 6 times. One turnaround was at the Chilean research base and the other turnaround was at the Chinese research base, and our base camp was about the middle. On or first out, Brian and I realized we were over-dressed. I had three layers and he had four. On our first opportunity, we dumped our top layers at base camp. This would be the first of 10 visits to base camp during the run. We had to stop so many times because I needed water, Perfect Bars (extra hungry in the cold) and porta-potty breaks, plus Brian had to change out his shoes. All the stops added a significant amount of time to our run.

Painful Rocks
Huge Painful Rocks

I overestimated the cold and wore a lot of layers, but I underestimated the terrain. It was extremely rocky, which ranged from pebbles to boulders. The heel on Brian’s shoe tore off and fortunately he had an extra pair of running shoes at base camp. We walked a lot of the marathon. The rocks made our footing very unstable and it was so harsh on our feet. I formed a ½ inch blister on the side of my left heel (such an odd place) because my feet were sliding a lot. We realized we had to play it safe by walking on the hard parts to avoid injury. We still have three marathons left on our adventure.

Hills were also a difficult factor. Total elevation gain according to my Garmin was 4,150 feet. The steepest hills were definite walkers!

There were times when I was disheartened during the run. Before going to Antarctica, our race director prepped us to leave no food wrappers, garbage, or human waste behind. Zero impact. Even when Brian’s shoe heel fell off, we searched for it while running and brought it back to Chile. However, I saw litter around research bases. One had broken bottles all over the ground as if there was a drunken party the night before. I also saw a big sea bird pecking at a Styrofoam box. That was disturbing.

Penguin Spectators!

Despite the rocks and trash, we tried to remain happy and positive. We felt extremely lucky to be able to run on Antarctica. I told Brian several times during the run that I could not believe we were there. Again, I felt like I was in a dream with penguins as our cheerleaders!

It was also really nice that it was an out-and-back course because we could see our running friends throughout the run and we cheered for each other. 

Tough run on harsh terrain
I could not do any of this without the love of my life... and my AFO!
Slowest Marathon EVER!

We were extremely happy to complete this marathon. It was by far the hardest event we have ever accomplished.

My MS symptoms were in check during the whole run. I was so fearful of my body rebelling due to the cold because I do have pseudo-exacerbations in extreme weather. The main issues I had were electric shocks in my upper back and arm weakness that lasted most of the night, but I was so tired (and I took NyQuil) that I was able to ignore it and fall asleep.

I also cannot believe we camped in Antarctica. This was my first camping experience EVER! We bought 5 degree sleeping bags and they were very warm. However, the sleeping pads provided were pretty thin and I could feel the cold, rocky ground. Sunset in Antarctica was 11:00PM and sunrise was at 4:00AM. Needless to say, we did not get to sleep in.

White Bucket!

I’m not sure if I will be a camper. It is awesome to say I camped in Antarctica, but the zero impact thing is tough. At our orientation meeting, we were instructed how to use the porta-potties. Pee in the white bucket and poo in the black bucket lined with a plastic bag. We had to dump the pee in a big oil drum. The poo bag had to be tied and pushed into a poo tube. I made sure to take a lot of anti-poo pills. I know that is TMI, but you lose modesty when you’re a marathon runner.

The next morning, we toured the Chilean research base. The scientists must commit to two years and they are allowed to bring their families. Consequently, they have a schoolhouse and when one child has a birthday, the entire town attends. The woman who gave the tour grew up on the base and she said it is a very tightknit community. Our guide said the only "flower" in Antarctica is this lichen and it takes 100 years to grow!

 

Chilean Research Base Tour
Russian Research Base
Russian Orthodox Church - Interior
Russian Orthodox Church - Exterior
 

We also visited a Russian Orthodox Church on the Russian research base. The interior was gleaming with gold and it was such a stark contrast to the cold, dark exterior. It was almost symbolic of my marathon experience. I ran in cold weather on top of black rocks, yet my spirit was beaming with gratitude for this amazing opportunity!

A heartfelt thank you to all my sponsors and donors for making this trip and all my other marathons possible. A HUGE shout out to Hanger Clinic for reaching out to the race director to directly pay my registration fees! I could not make this dream happen without your support. Perfect Bar kept me well-fueled before, during and after the run. Thank you XCom Global for keeping me connected while in Chile and powering my Facebook posts. You are all so awesome!

The first photo of Brian and me, as well as the picture of Brian, me and my AFO, are courtesy of Rachael L. Hatch Photography. The photo of Brian and me running in the Chinese research base was taken by Rob Horton. Thank you Rachael and Rob!

 

2016 Summary of 7 on 7

Hello! I have been planning, fundraising and publicizing for my 7 marathons on 7 continents for a little over a year now. I would like to take the time to summarize 2016 and to thank everyone who has helped and supported me.

For a long time I have wanted to do something big to give back to the MS Society. They were instrumental in educating me about the disease when I was first diagnosed and they encouraged me to keep on moving. Once I came up with the idea for my adventure, I really didn’t know where to begin. I have never planned a trip or any event of this magnitude. I just knew that I needed to raise a lot of money for travel and for the MS Society. I drew up at least 5 different race schemes to fit 7 marathons on 7 continents within a 12 month period. I had a “dream plan” and a couple of contingencies. I created budgets around those plans to include race registration, airfare, 5 nights hotel and ground transportation for two people (having Brian by my side is essential because he has the stamina to drag my carcass across the finish line if needed). The result was a daunting $53K budget.

I had to do a fair amount of research and learning before I started fundraising. I reviewed many crowdfunding providers before opening an account with CrowdRise (they had the best return and a staff that rocks). To promote my adventure, I studied several blog hosts and built my own blog (with the aid of YouTube). I also started profiles on Facebook, Twitter and Instagram. I am admittedly slow to post because I’m pretty inept with social media. My millennial coworker tried to explain hashtags, but it's still nothing more than a “pound sign” to me!

If you don't give back no one will like you - CrowdRise

Once my blog was live, I contacted the race directors on my marathon list. London Marathon was part of the dream plan, but they would not accommodate me. I could try to enter via lottery but the success rate is less than 7%. I could pay a ridiculous amount of money to join a marathon tour group to London. Or I could raise 5,000 pound sterling for a specified charity to guarantee entry. But I am a charity, I thought, and I am already collecting funds for the MS Society! Sadly, I had to remove London Marathon from my race calendar.

The race directors for Cape Town, Honolulu, Vienna and Christchurch Marathons were all very generous and extended complimentary entries to both Brian and me. As expected, the full price for White Continents Marathon in Antarctica would be due. The same for Tokyo Marathon (they flat out stated that no complimentary entries are given to anyone).

I wrote emails and letters to more than 50 companies requesting funding and/or products. I reached out to airlines, hotels, health food industries, running shoe and apparel companies. I also contacted non-sporting companies. I thought I had some cool ideas that could help promote them in an original way. Examples: wind resistant motorcycle apparel for Antarctica from Harley Davidson, gift certificates from Marie Calendars and Papa Johns for a March 14th “Pi Day” fundraiser, and even post-race pain killer (i.e. alcohol) from The Kraken Black-Spiced Rum Company. I’m not a key player on anybody’s scorecard, however, so these efforts were fruitless.

I did have some luck with “cold selling” in person.  I have taken every opportunity to walk up to vendor booths at race expos, travel conventions and even Costco! I had success getting in-kind donations from Perfect Bar, NuttZo, BIC Bands, Running Skirts, Fitletic, AirMed International and XCom Global.   

My Computer Science & Engineering department has been unbelievably supportive. Brian’s Monthly Musings have extolled the virtues of Alex Snoeren (Round-trip First Class airfare to South Africa) and Rajesh Gupta (essentially all expenses for travel to Honolulu). Several other faculty have also made large cash donations. The staff, too, have been awesome with attending my fundraising events and covering my desk while I was out of the office for the Cape Town, Buenos Aires and Honolulu Marathons. I am lucky to work with such great friends!

I particularly would like to give a huge shout out to Mindy Schroeder, Kim Graves, Julie Uhren and David Bareno. They have participated in all three of my fundraisers: Culture Brewing, BIC Bands headband sales and the Hile Mile run.

In regards to these events, the most successful was the sale of BIC Band headbands. Sandy Pearson, owner of BIC bands, allowed me to custom design a headband pattern. She printed it, sewed together the headbands, and graciously donated 40 bands for me to sell. I requested $15 per band, but averaged almost $20 because most friends sweetly donated more.

I wrote three proposals to nonprofit organizations soliciting grant funding. For 16 years, I have been assisting professors at UCSD to submit proposals but this was the first time I ever sent out requests for myself. One foundation had vague guidelines, but I gave it a try. It was shot down because I do not live in Riverside County (residency requirement was not in the instructions). I have one pending request which will, in all likelihood, be rejected. I had to justify how running marathons will give me a “brighter future” and that is a hard sell. I did score with the third proposal, though! The Challenged Athletes Foundation granted me $750. As such, I am a proud member of the 2016 CAF Team and, fingers crossed, I hope to be renewed for 2017!

Tyler Sharette, Julia Bucciero and Blake Henderson from CrowdRise connected me with interviews for People.com, the Daily Mail and Huffington Post. Plus CrowdRise featured my story on their “Decent Human Being” campaign. Hanger Clinic went even further to promote me: Shonn Goodwin and a four member film crew created a wonderful promo video. Plus, Deanna Fish, Krisita Burket and Meghan Williams sent out press releases which got me an interview with Foxnews.com, and TV appearances on The Doctor’s Show and NHL’s MichaeLA. These articles prompted local San Diego TV stations, FOX5 and CW6, to interview me on their morning shows.

Once my story was shared nationally, I received a small number of donations from the general public. However, it did not snowball as I had hoped it would. Each interview averaged 3-4 donations from very kind strangers. I understand. There are so many worthy causes out there that need donations.

I did receive some fun surprises from various companies, however. Cliff Bar reached out to me and sent a care package of goodies (some of which were yummy “mint chocolate” flavor). Dr. Cool, an athletic apparel company, signed me up as an ambassador and has provided some great running clothes. Wade Bader, founder of Kinetic Research and inventor of the Noodle AFO, donated $1,000. Even Fantasy Island Amusement Park in New Jersey donated $250 after hearing my story! And Hanger Clinic stepped up to the plate again in a huge way. They made two whopping donations totaling $15,000 which paid my Antarctica registration fee ($7,950), my airfare to Antarctica, and much more in one fell swoop! 

 

Stop MS, restore what's been lost, end MS forever

Multiple Sclerosis Societies worldwide have also been a huge help. Sharon Shahnazarian from the Pacific South Coast Chapter has been with me from the start. She has expertly advised me on fundraising, connected me to people in the MS community, invited me to special events where I met more people, and signed me on for a couple of speaking engagements. Non Smitt and Claudia Dieckmann from Multiple Sclerosis South Africa have blogged about me and welcomed me into their Move for MS group. George Nakajima from Japan Multiple Sclerosis Society has been fundraising for me in Tokyo and is arranging two events where I will share my story with MS patients and doctors in Japan. It will be a whole new experience speaking with a translator!

Regarding public speaking…. In addition to the TV interviews, I had a dozen speaking engagements as patient advocate for the drug company that makes my MS medication. Even though my heart races toward 200 bpm before stepping on stage, I am somehow able to find my voice and speak before a crowd. It is interesting how this adventure has forced me to become more outspoken.

One motivational speaker who has really moved me is Wendy Booker. I first heard her in 2010 in Seattle. She regaled her story of being the first person with MS to climb Denali (she has since climbed all 7 of the world’s highest peaks and crossed the North and South Poles). It was a perfect time to hear her talk because I was getting depressed living in Seattle. Her story planted a seed in me to do something big. Even though my 7 on 7 idea came 5 years later, it was something that was always in the back of my mind. I had the lucky opportunity to meet Wendy again in Newport Beach at an MS Society event this past May. I was finally able to thank her face-to-face and we are now formulating ideas for another big project in the future.

Come climb with me - Wendy Booker

Presently, though, I am concentrating on the 4 remaining marathons. Antarctica is next…. I was fortunate to meet another amazing lady last November. Beth Sanden walked up to me after the Silver Strand 5K to ask me about my AFO. She looked familiar to me and after talking, I recognized her as the first Challenged Athlete to do 7 marathons on 7 continents using a hand cycle (she is partially paralyzed). Her next goal is to the North Pole Marathon thereby completing the “Grand Slam.” She has become a personal advisor for the White Continents Marathon, giving me tips on the polar vortex, camping supply needs and penguin poop! There is more to Antarctica than I ever imagined!

2016 has been a great year with lots of travel, fun and surprises, but also stress and struggles. Even though I smile a lot and appear to be healthy, I do have a lot of continuing neuropathic pain from MS. I want to thank Karin Ireland for magically knowing when to send positive vibes. Lastly, but certainly not least, I am extremely lucky to have an amazing husband who knows when to nudge me forward to get past the pressure or to hold me close when I’m in distress. He is the reason why I can do all of this.

Hopefully, 2017 will be an amazing year for you. I hope my mission encourages you to create goals to move, whether it means walking 7 miles a week or using your cane to walk 7 meters from your front door to your mailbox. Remember my motto to "do what you can and never give up!" You are a champ as long as you try!

2016 By the Numbers

3 out of 7 marathons completed:
Cape Town Marathon 4:51
Buenos Aires Marathon 5:05
Honolulu Marathon 5:41
I ran 78.60 miles at an average of 5 miles per hour
Usain Bolt clocks at 28 miles per hour for the 100 meter dash, yet he has never run a mile!

To date, I have raised $43,890:
51% from friends, mom, brother and aunt
46% from companies
3% from strangers

Pre-, Mid- and Post Marathon Consumption to date:
6 Perfect Bars
3 Bagels
18 Gu packets
6 anti-diarrhea pills