Sunday, July 26, 2015

Race Report: The Blazeman Run

Not every 5k race report begins with a trip to the ALS clinic, but that’s where our race weekend started.

We were there for FIVE hours, instead of the usual 3+, because I had a date with the pulmonologist for some breathing testing – 93%, which is excellent!

Actually, all the news this time was excellent. Turns out it just took me complaining about my last clinic appointment to make the universe and Facebook friends rally around us. My neurologist said my muscle strength has stayed consistent for the past 6 months (which is when I started seeing her), leading her to tentatively conclude that I have may have slow-moving disease. She is also going to recommend me for an upcoming Phase III trial of tirasemtiv – not a cure for ALS, but a “skeletal muscle activator” (read: lungs, breathing). The great thing about a Phase III trial is that so far there have been promising results and no one gets the placebo. I had all but given up on clinical trials until this one fell in my lap. It doesn’t get any better than that!

The ice bucket challenge funded this trial. Fundraising matters. Research matters. Get your buckets ready!

We then embarked on our eight-hour drive to Rhode Island. Up I-95. In rush hour traffic. On a Friday. In the summer. Ugh. The best laugh we got was a photo text from DP’s aunt who had already arrived at our B&B with her son, Will – the picture? Will sitting in the hot tub in their room watching the Red Sox, clicker in hand. It doesn’t get better than that when you’re 11…maybe ever.

We ate our way through Saturday – breakfast by the pool, lunch with Jon’s parents at THE fanciest B&B ever, back to poolside for dinner consisting of pizza, wine, and s’mores.

This was the first time we had met Jon "Blazeman" Blais' parents, Bob and Mary Ann, in person, even though we've kept up a running email conversation for almost a year. I think the waitress came by six times before we finally ordered, we had so much to discuss. It was such a special occasion – sitting on the breezy verandah overlooking the ocean (and Taylor Swift’s house) talking about Jon, his convictions, and his vision for the Blazeman Foundation. We talked a lot too, but the conversation always drifted back to Jon. He was omnipresent, even ten years after his incredible Kona achievement and eight years after his death. Love for their son keeps Bob and Mary Ann going – everything they do is singularly focused on carrying on his mission as purely as they can. 

The Blazeman Run

When we arrived at the race site on Sunday morning, Bob immediately pulled me aside to ask if I would be willing to spread some of Jon’s ashes before the race started. It is a ritual that has been repeated countless times. Jon wanted his ashes spread at triathlons, races, and picturesque places he would never see. This was the inaugural Blazeman Run at the stately Aldrich Mansion set atop a hill overlooking the sparkling Narragansett Bay. This qualified. Besides, I was wearing bib #179.

So of course I said yes to this profound honor, but inside, I was rattled. Always the most squeamish kid in biology, I was not at all sure how I’d do handling human remains. More than that, I was not at all sure how I’d handle staring at my own mortality.

But I faced my fears – or more accurately, stuffed them down as far as they would go and triked with DP and Bob up to the beautiful, enormous pin oak at the start/finish line of the race. Bob’s voice boomed aloud with the invocation, but I could hear Jon’s New England accent in my head: “The decision must be instant…the commitment must be total.” Okay, I thought. For you, I will do this.

Afterwards, the small group of runners and spectators turned around to the start line. I hung back in the starting pack with Heather (who floored me with her last minute decision to fly up!), DP, and Will. The horn sounded and off we went.

We pitched down the steep hill towards the water, followed by a slow, grinding uphill around the mansion to make it back to the top. The driveway hasn’t been paved in awhile and I had a hard time navigating the loose asphalt and deep ruts. I don’t know if I can do this, I thought.  Immediately, Jon popped into my head. If he can do an Ironman, I can do this dumb hill. So with a push from DP, I regained my momentum and slogged my way up.

After that, it was smooth sailing for me. But it was all sorts of sticky humid, even though the temperature was in the 80s. DP was sweating buckets. He half-offered to finish the 5k with me but Coach Drea would have none of that. Off he turned to loop through the neighborhood on the 10k course.

Will and I crossed the finish line of the 5k at about the same time. I took some water and parked by the finish line and cheered other racers in. DP came in and then Heather pulled off a beautiful Blazeman roll -------->

We retreated back to the shade of the pin oak for the awards ceremony, mostly because we were waiting for Bob and Mary Ann to finish up and join us for brunch. We got to meet many of the Blazeman supporters that we see online, which was really nice.

All of a sudden, we heard the announcer…Will WON 1st in the 12 and under age group. He bounced up to the podium, beaming.

We were chatting with Heather when we heard DP’s name called. Whaaaat? 2nd place in his AG for the 10k! Way to go! 

[He says: Look at the podium – the guy in 1st has no spare ounce of fat in his racing singlet. The guy in 3rd was pushing a stroller. I guess, in that field, 2nd is about right. I say: a podium is a podium, killa! Man, you have a great coach!!]

For the record, I came in 1st in my AG but they didn’t call my name. Probably something about using wheels. Or maybe they just realized my trike wouldn’t fit on top of the podium ;)


Afterwards, we headed to brunch with quite a group: Mary Ann, Bob, DP, me, Will, Heather, DP’s aunts Polly and Pinky, Uncle Keith, my first cousin Kim and her husband Craig. It was a fun, comfortable atmosphere of fellowship, even though most people were meeting for the first time. I was struck by how vividly Jon’s legacy endures – creating friendship and memories far outlasting his lifetime.

Thank you to everyone who came out to support us and made the weekend so memorable. Thanks also to everyone who donated to the Blazeman Foundation in support of Polly and Will. Our youngest Team Drea member raised the most money so far for ALS research: $7,582!

We’ll see you next year, Blazeman Run!

Saturday, July 18, 2015

Augie's Quest event at VIDA

Two weeks after Lisa died in May, I got my first chance to represent as a Young Faces of ALS ambassador for ALS-TDI. I got an email asking if there was any way I could speak at an Augie’s Quest event…tomorrow.

Augie’s Quest was started by Augie Nieto. If you’ve been to a gym – ever – you probably know his work. He is the co-founder of the LifeFitness brand of gym equipment. So next time you’re working out on one of those weight machines and desperately in need of something to take your mind off all the iron you’re pumping, check out the brand of your fitness equipment and thank Augie for making you sweat J

Augie was diagnosed with ALS in 2005 (ahem, 10 years ago…I love reading about people busting the 2-5 year life expectancy) and remains active as Chairman of the Board of Directors for ALS-TDI. To date, Augie’s Quest has raised $45 million for ALS research.

I didn’t know any of this when I said yes to speaking at the Augie’s Quest event. I was just asked if I could share my ALS story at a silent auction/cocktail fundraiser/rooftop pool party at the Navy Yard VIDA gym…tomorrow. Sure, I said, send me the details.

DP and I were in the car on the way to VIDA when I realized the date. May 29th. One year to the day since I was diagnosed with probable ALS the first time, yet none of us really understood what that meant.

A year ago, I was rushing around from doctor to doctor, test to test, trying to hold down a full-time job and falling in the middle of the street. One year later, I was in a cocktail dress on the way to a speaking event about being diagnosed with a terminal disease, supported by a Team Drea army of 70+ people swimming, biking, running, and fundraising for ALS research. So much can happen in a year.

[Side bar funny story: In the parking deck of the gym, we made our usual beeline for the handicapped parking space. Hey, with all the sh*ttiness that comes with ALS, the ONE perk in trying to get around is parking close to the entrance/elevator. DP starts to pull into the space with the blue and white wheelchair symbol and we notice a sign – VAN PARKING ONLY. Whaaat?? It cracked me up…it’s like we discovered there was a Platinum level in the disability rewards club and we’re only at the Gold level. J So DP backed out and moved to another space. Trust me, we are in no hurry to upgrade our membership!]

Anyway, we took the elevator up to the gym level and met our point of contact, Aaron, who is the director of operations for VIDA. Super nice guy. As we made our way to the penthouse level with the rooftop pool, he filled us in on who Augie is and how VIDA fundraises for Augie’s Quest to benefit ALS-TDI.

We stood around for a few minutes, declining drinks and trying not to be nervous (why oh why do I say no to alcohol before speaking engagements? In the future, don’t ask me, just hand me the drink!)
I was struck by the atmosphere – these are mostly our peers, or at least they used to be. Fit, thirty-something professionals in DC with no kids, kicking off a gorgeous late-spring weekend by letting loose after a long grinding week at the office. Yeah, we know. We used to be part of this tribe too, until ALS came along and derailed our promising, aspirational lives.

That’s what on my mind when the deejay handed me the mic. I told my story, including the fact that it’s the one-year anniversary of when I was diagnosed. Here was may basic message if you don’t want to watch the 5-minute video: We were just like you. I was a triathlete who had completed a 70.3-mile half Ironman. We had just bought a house and were looking to start a family. Now we are trying to wrap our heads around the fact that I have a 2-5 year life expectancy, and that before I die, I will lose the ability to move my arms and legs, swallow, eat, and breathe on my own. Instead of trying to plan for a baby, we are trying to decide whether it’s worth it to spend $80,000-$125,000 to remodel our house so I can get into it and use the bathroom. ALS can strike anyone at any time and we’re really playing catch up with research for this disease, since the only treatment available is one drug that extends life expectancy 2-3 months. Finding a cure through research is the only way we can find a cure to save lives. Boom. Cue awkward hand wave to open the silent auction.

There’s no equivalent of hearing a pin drop on a rooftop, but the background talking dies down in the video so I think the message hit home. I hope it did. Post-ice bucket challenge and being surrounded by this disease all the time, I forget that some people still don’t know how awful ALS is. 

Photo credit: Alfredo Flores, CapitolFile
As we walked around looking at the very awesome silent auction items (a trip to Mexico, an iPad, box seats at a Nationals game, etc), a lot of people came up to us and asked questions and thanked us for sharing our story – like Tommy McFly and Kelly Collis from The Tommy Show on 94.7FM, who did an ice bucket challenge later in the evening. When they got the mic, they made some truly heartfelt comments about remembering the true reason for the event. We really appreciated that.

We couldn’t stay too late – for one thing, we wanted to do our own dinner date to toast to one year living with ALS. For another, we had to leave the house at 6:30am the next morning for me to catch a flight to Raleigh to cheer on Team Drea Challengers Heather and David at the Raleigh Ironman 70.3.

Bonus: We met Abe on the way out!

The silent auction and event sales raised $27,000 for ALS research at ALS-TDI. Thank you VIDA, everyone who donated items, and everyone who came!

The other exciting thing to come out of this event is that I am now back at VIDA, training for a repeat of the Ramblin’ Rose Chapel Hill triathlon in October. I used to be a VIDA Chinatown member until we moved out to the ‘burbs. But after I scoured Silver Spring for a gym with an endless pool (think “swimming treadmill”) with no luck, I asked Aaron if I could try out the pool at VIDA again. Now DP and I are both hooked up with memberships and I couldn’t be happier.

An endless pool is perfect for me. For one thing, the water flow is adjustable so I can find the right speed to swim against. Also, the little bar at the head of the pool (where the water comes out) is an absolute game changer. I can hold onto it and practice kicking. I can run (me! RUN!!) against the resistance of the water and not worry about falling. Since I’m just getting started with swimming again and my endurance isn’t that strong, the bar helps extend my workout by at least 20 minutes.

But below the surface of the water is where the real treasure is, for any swimmer. There is a MIRROR on the floor of the pool so you can watch your form. This is GENIUS. I am obsessed with it.

For the life of me, I can’t figure out why the endless pool is never busy, but I will happily reserve it each and every time I can get to the gym. Thanks VIDA! You turned my dream of doing another triathlon into a realistic possibility and I am so very grateful!

Tuesday, July 7, 2015

Team Drea Challenge Guest Post #4 - by Carissa

Anatomy of a Team Drea Challenger

I had been thinking about doing a half marathon for quite some time. It seemed like such a big, daunting goal. I never came up with a solid plan to do it until signing up for the Team Drea Challenge in January. I was incredibly fortunate to have the honor of training with Andrea starting in March. We triked/ran several times together, each time a longer distance. It was so motivating having Andrea in front of me "pulling" me a long. Whenever I got tired, I just looked ahead and there she was triking along, and I didn't want to be left behind! Fortunately, we always went out to eat after each run so I would think about what I was going to eat afterwards while on the long runs. 

When I invited Andrea to come to my race, she said she was going to participate in her on race that same morning! I told her, "why is this no surprise?!" Most people who have disabilities similar to Andrea would never dream of being as active as she is. I am simply amazed by how well Andrea is able to trike around, despite having ALS, and that she continues doing races. After several weeks of training, I felt ready to complete the half marathon on May 3. 

[Editor's note: I only realized a half marathon was a possibility thanks to triking with Carissa!]

On the morning of the race, my husband took this picture:

I have labeled all the swag that makes up the anatomy of a Team Drea member. Some of the swag includes the 179 green T-shirt, the temporary Team Drea tattoo, the Team Drea bracelet and the most special part, the water belt. Andrea graciously gave this to me during my training. It's the same water belt she used during her training, and I greatly appreciate her gift. 

With all my swag and gear ready to go, I was on my way to completing the longest run of my life. I ran the Potomac Half Marathon course, which is on the trail of the C & O Canal. It was a very flat, beautiful course and I really enjoyed the run. While I was pretty anxious the first couple of miles, I quickly fell into a good pace and completed the race in 2 hours 24 minutes, which was under my goal of two and a half hours. Thank you Andrea for inspiring me to do this race! It has meant so much getting to train with you and complete a major goal. 

Saturday, July 4, 2015

Long Live Part 3!

I should have known better than to have promised three blog posts in one week. I'm just so busy these days. The more time passed, the more I felt guilty about being behind, and the more I procrastinated on it. But I have missed my blog and I have had such a crazy (...gulp...) six weeks that I'm back at it. So hello! :)

Celebration of Andrea

The day after Lisa died, we headed down to Raleigh, where my friends from high school Krista and Demetri (now married) put together a "Celebration of Andrea" potluck. They invited everyone who still lives in the area and was in our band friend group. We were a tight-knit bunch and though there were many friends missing because they're scattered around the country, it was great to see and catch up with the folks who came. It was especially fun to meet all of the significant others, the kids (so many kids!), and to hear about what interesting careers everyone has gotten into. 

What I like about catching up with friends you haven't seen in years is that it forces you to take a step back from your life and try to summarize it into a few vignettes that are most important. While that could feel shallow to some, I find that it puts those day-to-day annoyances that we all deal with back into perspective. Hopefully, you're not going to waste time complaining about that co-worker who drives you crazy all day, you're going to talk about the job and career itself -- how you got there, why you like it or what you're hoping it leads to. And it reminds you of how (and how much) you've changed since high school.

I was also happy that it felt so comfortable seeing everyone again. There were scrapbooks and posters with photos from marching band which led to a lot of laughs about dorky haircuts, even dorkier glasses, and how young we all looked.

Of course, I was thinking about Lisa. Lots of her friends posted those types of photos on her FB wall since she died and I kept thinking, "man, such a shame Lisa can't see this!" So I was extra grateful my friends had put this shindig together so I could be there to laugh with them.

I have to mention one poignant moment that melted both DP and me. My friend Stacy has three BEAUTIFUL kids
and was telling them about me before the party. Her 6-year-old, Rhys, had been scampering in and out of the house with the other kids, but stopped when he saw me and came right up to us:

R: What happened?
Me [looking at DP for help]: Ummm... (how do I explain motor neurons to a 6yo?!)
DP [squatting to eye-level]: Well, she has ALS.
R: What's ALS?
DP: Well, it means that it's hard for her to move her muscles and do things like walk around.
R: I know about ALS but I never met anyone with ALS.
Me [not really necessary to squat ;P]: Well, now you know me. Okay?
R: Okay. [scampers off]

It was just so innocent and sweet. I've heard from Stacy that her kids continue to pray for us every night and Rhys wants to become a doctor so he can find a cure for ALS (not involving a shot, of course, lol). Man,'re a good mama, Stacy!

I've kept up the re-connection with several of the friends I saw that day. Moreover, several of them have kept in touch with each other, all of which makes me happy. Everyone's busy and has friends all over, but when we have the opportunity to remind each other that we still care, it's so worth it.

Finally, I want to say a HUGE thank you to everyone who came to the potluck, Krista and Demetri for hosting, and all those who contributed to such generous gifts for DP and me.  Please do not think that my tardiness in posting this reflects how grateful we were, and are.

Ramblin' Rose Raleigh -- Spectator Report

The next morning, we were up WAY too early to see Julie, Heather, and a few SBM friends in the Ramblin' Rose Raleigh triathlon. I was a little apprehensive because this was my first race as a spectator rather than a competitor, but it turned out to be just as a different way.

DP and I missed Julie before the race because we were sneakily putting signs up on the bike course...many of which our friends had made at the potluck the day before:

Post-race restaging of the signs :)
But we met up with several Team Drea Challengers, including my parents, Julie's parents, Linda, Shannon and her daughters (oh the cuteness!):

And Jillaine. DP and I had just met Jillaine in person the week before -- her mom died of ALS six years ago and she and her sister Jodi ran a marathon in her honor.  This year, they're running the Navy Half Marathon in September (and staying with us, squeee!!) -------------->

Also, Amy, the race director from Ramblin' Rose Chapel Hill, and her daughter, Julia, hung out with us -- they have both become friends of ours so it was great to see them as well.

Basically, I didn't even have time to miss not being out there, such a reunion we had in between cheerings as Julie and Heather biked or ran past.

Group photo of the Team Drea spectating crew!
After the race, we headed to the Sawmill Tap Room...all 25 of us. It was fun getting to introduce friends and family to one another and talk with SBMs I mainly know from FB.

And I FINALLY got to meet Heather in person who has taken the Team Drea Challenge to heart and become such a close friend.  She wrote a much more eloquent race report than I just did.  This part, in particular, I LOVE:

"At one point I caught Andrea watching her husband as he left the restaurant for a bit.  The only way I can describe her eyes is "love."  I know that love, because I feel that way, too, when I watch my own husband sometimes.  She loves him so much - Andrea loves all her family and friends with every bit of her soul.  She loves this crazy world so much - she wants to make it a better place.  And that is one of the many qualities about her I am thankful for.  Her "love," her honest caring, is what inspires me to want to keep on doing all the things - to never quit."

You said it, my friend.  We may have only just met each other, but you know me so very well.

Final reflection

I cannot believe that one year ago today I shared my half diagnosis of probable ALS (which was really a real diagnosis, but we didn't understand what the neurologist was telling us at the time). It seems like ages ago, thinking back on all the amazing adventures I have had since then -- moving to our new house, getting diagnosed with ALS (again), getting a trike, getting a kitten, Ramblin' Rose Chapel Hill, the Walk to Defeat ALS, the magazine cover, starting the Team Drea Challenge, going to Turks & Caicos, the Coastal Delaware half marathon, the great driver's license debacle, a hot air balloon ride, meeting Jon's mom & dad...

AND we have raised $50,000 for ALS research!!!

It has been an incredible year and I am JUST as excited about the year to come. I just want to say thank you from the very core of my soul to everyone who has been there for us. We are so very blessed.

On the 76th anniversary of Lou Gehrig's famous speech, let me echo his immortal words:

"Today, I consider myself the luckiest man on the face of the earth. And I might have been given a bad break, but I've got an awful lot to live for."

Happy 4th of July!!