Capitol Hill Advocacy

The past several months have been a whirlwind of travel for me and I’m way behind on my blog and can never seem to find the time to update it. In between traveling I’ve been trying to train for my big triathlon in July as much as I can, and have been kept very busy making tutus. In my last post I talked about the Spring Sprint Triathlon, my first triathlon back after a 2 ½ year hiatus. That race came right on the heels of a trip to Vegas for work … and believe it or not later that evening after the race I was back on a plane again headed to DC.

 

 

Spring Sprint Triathlon Complete!

 

 

Red-Eye Sleep Mask from JetBlue

In early May David and I attended an advocacy event called “Head to the Hill” put on by the National Brain Tumor Society. According to the event website:

On Tuesday, May 6th, brain tumor advocates from across the country converged on Capitol Hill to share their stories and advocate for public policy issues that are important to the brain tumor community. This year’s fourth-annual Head to the Hill Advocacy Day was our largest to date, with 135 advocates from 30 states attending 156 meetings with members of Congress or their staff.

This event sounded like a great way to get involved and make a difference in the brain tumor community, and also gave us a chance to visit David’s family. I managed to talk David’s mom into attending as well so the Allens were 3 of the 135 attendees and represented California and West Virginia.  The event started out on Monday afternoon with a training session on the three keys issues that we would be advocating for.

 

 

Brain Tumor Advocacy Issues

 

1. Oral Chemotherapy Parity – ensuring affordability of oral chemotherapy, the standard of care for brain tumors (more here)
2. Caroline Pryce Walker Conquer Childhood Cancer Reauthorization Act – a bill to improve pediatric cancer research and information (more here)
3. Appropriations for Medical Research and Drug Approval – ensuring support for brain tumor research and drug development (more here)

 

The following day we would be broken up into a group of California constituents who would be visiting Senators Diane Feinstein and Barbara Boxer, and then later California would be broken up into several smaller groups (because there were so many of us from California - go California!) to visit our representatives for our regional areas. In each meeting that we had scheduled there would be a set flow to the meeting with assigned roles for each topic. In the larger California group there were more of us than there were roles so I didn't speak, but in the smaller group I volunteered for the role of talking about the oral chemo parity act since that was one that is personally relevant to me. In our training we spent time going over the issues, assigning roles, practicing our parts, and role playing.

 

 

Advocacy Training Day

 

That night after the training we headed over to Nationals Park to meet up with David’s parents, brother, and brother's fiancé to watch the Nationals vs Dodgers game. It had been a beautiful sunny day … up until the moment we stepped out of the Metro station. It started raining, then raining harder, then pouring. Such a shame because we had great seats! We watched three innings before they stopped the game for a rain delay (We were soaked by this point!) and after waiting a bit to see if the rain was going to let up we ended up going home. We found out later that after a 3 hour delay (?!?!) they ended up continuing the game and finishing it. Um, sounds miserable.

 

 

Rainy Nats Game

 

The next morning we were up bright and early to meet everyone for breakfast before heading off to Capitol Hill. So much for my plans of running around DC... oh well! We were starting the day with a group photo on the steps of the Capitol before breaking up into our smaller groups and heading off to our meetings.

 

 

Headed to the Hill!

Car2Go Sighting!(My morning transportation to the train station in SD)

 

 

California Constituents

Head to the Hill Advocacy Group

 

Our first meeting was with Diane Feinstein’s office. A San Francisco legend!! She had a lot of San Francisco photos and memorabilia around her office which was really neat. She also had a bowl of California prunes, which we later saw was a staple in the offices of many of the California representatives. Who knew prunes represented California?

 

 

California Prunes - Did the CA Raisins retire?

For those who didn't grow up in CA in the 80s,
check out this video for reference to the CA Raisins

 

In this first meeting I felt perfectly fine until we got to the part of our presentation where someone shared a personal story. This woman in our group talked about her own personal battle with brain cancer, showed pictures of friends she had lost, and also said “I know that this is something that is going to kill me someday”. (She didn’t say this in our practice session the day before.) It took about everything I had not to burst into tears. That is something I often think about, but rarely say since I don't event want to acknowledge the chance of it. Hearing someone else say it so matter-of-factly hit too close to home. I thought that nobody noticed my eye-watering moment in the meeting, but it turns out that the woman who was talking did. After we left the office she came up to me and said something along the lines of – “Hey, I’m sorry that bothered you. You know that I only said that to get to them right? I don’t believe that is the truth. Doctors don’t always know everything. No one can predict when you’re going to die”. As a long term survivor (9 years I think?) I found her words fairly comforting, but I was still shaken up a bit. But … we moved on with our meetings and I kept it together.

 

 

Outside Diane Feinstein's Office

 

Well … I kept it together until one of our smaller group meetings with Susan Davis, our representative for San Diego. In most meetings we attended David was sitting by my side, but for this meeting for some reason he ended up across the table from me. During the meeting I was going through my part talking about oral chemotherapy and how it was something that I was on for a year, and how as someone with an inoperable brain tumor it was my only choice of treatment, and sadly there aren’t really many other treatment options. As I was talking about this I looked across the table at David and out of nowhere burst into tears. The gravity of my situation suddenly hit me, and I just lost it. I tried to finish my part but was sobbing through the whole thing. SOBBING! What a mess. Hey, at least I came through as passionate right? So embarrassing … We had one more meeting after that and luckily I had everything back under control and didn’t cry again, although I’m sure I had the rest of my group nervous about my emotional instability.

 

 

Busy Day of Meetings!

 

At the end of the day we had five successful meetings. In each meeting we found out that the representative either already supported what we were advocating for, or the staff member we talked to seemed engaged and interested in the issues we were talking about. After the day ended David and I talked about whether or not we thought our meetings made a difference, and we both felt that they did.

 

 

Team Allen Advocates

 

A few weeks after the advocacy event we received an email from the event organizer confirming our speculations. A number of co-sponsors were added to the Cancer Drug Coverage Parity Act and the Caroline Pryce Walker Conquer Childhood Cancer Reauthorization Act soon after our meetings! For example, the first act only gained 4 co-sponsors between January – May 2014, but 6 more co-sponsors were added in the days following our meetings. Wow!

 

 

Capitol Hill with My Rappelling Friend Beth!

 

The whole event was really a great experience. It was well run, we enjoyed trying to make a difference, it was fun meeting all of the other advocates, and hey – we snuck in a trip home for David to see his family. If you are interested in advocacy work with the National Brain Tumor Society, you can find more information on their website.

 

 

Vegas, Vegas, & A Triathlon

April and May have been really busy months for me with a number of trips that were personal or business. Over the last weekend in April David and I went to Vegas for the Stupid Cancer OMG Cancer Summit for Young Adults. The OMG Cancer Summit is "the premier oncology conference and social networking event for the young adult cancer movement".

 

 

Stupid Cancer Co-Founder in a Glam Runner Tutu

 

 

This was our second year coming to the conference and I enjoyed both attending the various sessions and meeting and spending time around so many other "young" (under 40) people going through cancer. My favorite session this year was the same one as last year titled "Cancer as Chronic". In this session almost everyone in room was in the same boat as me. We're fighting chronic/incurable cancers, living three months at a time between scans, and trying to enjoy a normal life in the mean time. Looking around the room you would have never guessed what had brought us all together. For the most part everyone looked healthy. One of the panelists even commented on that and everyone nodded in agreement. Some of the other sessions we attended were Cancer and the Environment and Cancer and Fertility.

 

 

Bumping Into Diane in Vegas!

 

While we were in Vegas we also happened to bump into my friend and former coworker Diane who was in town for a dental show. We crashed her reception one night and had a drink with her before heading off to dinner. We had dinner at my favorite restaurant Jaleo the first night and Rx Boiler Room the second night.

 

 

Selfies With the Husband

 

 

After coming back from Vegas I was in San Diego for a couple days before it was time to head back there again. This time for work to exhibit at a medical conference. Two trips to Vegas in one week is one or two trips to many, and by the weekend I was ready to go home. Especially since the day after I got back from Vegas I had my first triathlon of the year!

 

 Running on the Strip - Vegas Trip #2

 

 

I got home from Vegas late Saturday night and was up bright and early on Sunday morning for the Spring Sprint Triathlon. This was my first triathlon in almost three years, and was the first of three that I am doing this year as I progress up to a half Ironman distance race in July.

 

 Tri Gear Ready To Go

 

The hardest part of a triathlon for me is the swim. I'm not a great swimmer and I HATE swimming in the ocean. The water is murky and cold and having plants and who knows what else touch me in the water really freaks me out. I've been taking private swim lessons with a coach for the past few months to work on my technique and speed, and hoped between that and my single brief open water swim a few weeks before the race I'd be fine on race day.

 

 

First Time Back In The Ocean!

#oceanselfies

 

 

Well .... I ended up freaking out in the water. I can usually calm myself down and just get through the swim at a decent pace, but during this race I felt like I was hyperventilating the whole time. I could never catch my breath and ended up breaststroking for about half of the distance. Oh well, it was slow but I finally got through it.

 

 

Happy To Be Out Of The Water

 

 

The bike was a bit better although I've barely been riding my bike. I signed up for the San Diego Century next weekend to help keep me accountable on my bike training. Um, it hasn't. Prior to the Spring Sprint I probably rode my bike four times all year due to travel and various other excuses.

 

 

Having Fun On The Bike





 

 

The bike portion of the race went fairly quickly and as usual I was so happy to finally be running. At least I know how to run! The race overall was short and the swim was 400 meters, the bike was 10 miles, and the run was 3 miles. My goal for the race was to finish between 1:15 and 1:30 and I came in at 1:23:52. I'll take it!

 

 

Best Part Of A Triathlon - The Run!

 

  

After the race David and I went home to relax for a bit but later that night we were back on a plane again to head to DC. What a crazy week! We went to DC for three days to do advocacy work on behalf of the National Brain Tumor Society. More on that in my next blog post!

 

 

My Triathlon Cheerleaders Tara & David

 

 

In the mean time, we are now two months away from my half Ironman distance triathlon Barb's Race. All participants in Barb's Race are required to raise $250 to go towards a cancer charity in honor of Barbara Recchia, a long-time race volunteer and committee member who has unfortunately been faced with cancer twice. If you are interested in helping out with my fundraising you can access my page here.

 

 

 

Why I Love My Brain

Back in the Fall of last year Girls on the Run San Diego asked me to be the guest speaker at the women's film festival Lunafest. I spoke for the first time publicly about finding out that I have cancer, going through treatment, running, and why I love Girls on the Run. A teacher from one of the schools where we hold Girls on the Run reached out to me after the event and said that she really enjoyed hearing me talk and asked if I would be able to come and talk to the school for an event they were having called "Love Your Brain". Me?? Uh ..... sure! The event wasn't until April which was six months away and I almost forgot about it until a month or so ago when we touched base to go over details.

 

Packed Auditorium at Skyline Elementary



 

I found out that I would have about 30 minutes to speak to the 6th graders about my story which would tie into their week long event themed "Love Your Brain". In preparation for my visit the school showed the students my Katie Couric interview. I was nervous preparing for this talk since I wasn't sure what I should share that would be appropriate and interesting to kids that age. I wanted to be honest about my disease but didn't want to scare them too much, and wanted to somehow come across as a good role model.

Gift from the School

 

 

As I was putting together my photo presentation I decided to start out by talking about me, things I like, where I grew up, where I went to school, what I studied, and where I worked. This was a perfect opportunity for me to plug engineering of course, and I talked about how I majored in Mechanical Engineering and told the kids about the cool jobs I was hoping to get (working at Disneyland as an Imagineer or working at Mattel designing Barbie Jeeps) and what cool jobs I actually ended up getting (working at a robotics company and working at a video game company). It may seem silly, but I feel a need to do my part when I can to encourage kids to think about engineering as something fun and cool ... and of course something that a girl can do!

Engineering Class Trip to Chevron

 

 

I also included pictures that allowed me to talk about running, dressing up, and Girls on the Run. I also explained how I was diagnosed with brain cancer, what type of treatment I went through, and how I kept running through it all.

 

To tie in with the theme I ended with the reasons I love my brain. I love my brain because it allows me to be:
 

 

CARING

 

 

INTELLIGENT

 

 

CREATIVE

 

 

CONFIDENT

 

 

MOTIVATED

 

 

BRAVE

 

 

SUPPORTIVE

 

 

OPTIMISTIC

 

 

 

Yes, I did throw some things in there to be crowd pleasers like the pictures of the dogs for my "caring" example. If you want you can watch the whole photo presentation here. It's a bit long, grab some popcorn!

 

 

 

 

After I finished my presentation they asked me to take questions. I never would have imagined that the kids would have so many questions for me. Boy was I wrong! The whole room was filled with hands in the air! I answered question after question for about 15 minutes until we finally had to cut the kids off. The questions ranged from "Do you play any musical instruments" to "What do you do for your job now?" to "Have you ever done an Ironman?" to the last question which was the hardest question to answer ... "What would you do if you were told you only have one year to live?" Geez kids, getting heavy here! I was able to answer all of their questions and really had a fun time doing so. If you haven't finished your popcorn and want to kick back and watch another 15 minute video, here is the segment with all of the kids questions.

 

 

The whole experience was really great and I loved having a chance to spend the afternoon with these kids. I hope they all love their brains a little bit more now!

 

 

My Katie Couric Interview

It has been a week now since I was on the Katie Couric show. I can't believe I even get to type that! I was on the Katie show!! A producer contacted me a couple days after the Tutugate story broke and asked if I could come out to New York the following week to appear on the show. Initially I didn't think I could do it since I had an important meeting set up for that Tuesday with a customer, but the meeting didn't end up working out and fortunately I have a very gracious boss and he let me take Monday and Tuesday off with short notice to fly out to New York! Best part of the trip was that the show flew David out with me too!

 

Soon after I confirmed for the show I saw this video that Katie posted on twitter. I have to say this is the coolest video I have ever seen!!! Check it out for the fun surprise cameo! View the video here.

 

 

Katie Tweet That Made My Day

 

 

I was already thinking about making Katie a tutu and after watching this video I decided to make her one as well as Lynda Carter. I had asked the producer what Katie's favorite color was and she told me to make the tutu any color, something bright, and whatever color I chose Katie would like. Well, I couldn't just make her any color tutu! I started googling pictures of her to see if I could see a color trend in her clothes. Not that something like that would necessarily reveal her favorite color. My favorite colors are purple and green but I never wear those colors. After seeing a lot of red, blue, and black dresses I was still stumped. None of those colors seemed right. I then decided to look up Katie on Wikipedia and that's where I found my inspiration. I read about how Katie lost her husband years ago to colon cancer, that she lost her sister a few years ago to pancreatic cancer, and that she lost her father most recently to Parkinson's disease. I looked up the awareness ribbons for each of these diseases and came up with the perfect tutu. Blue for colon cancer, purple for pancreatic cancer, and grey for Parkinson's ... and brain cancer (for me!). Lynda's tutu was a bit easier, I made her an all blue tutu like my Wonder Woman tutu, minus the sloppily glued on foam stars.

 

 

The "Katie" Tutu

 

 

David and I flew out Monday afternoon and got into New York pretty late. We went straight to bed and the next morning I was up early to go for my first run in Central Park.

 

 

Airplane Selfies - David's Digging It

 

 

I've been to New York about a dozen times but have somehow never ventured outside for a run. I met up with my friend Peter (fellow former San Francisco Marathon Ambassador) that next morning and we did a nice 4 1/2 mile loop inside the park.

 

 

My First Central Park Run - LOVED It

 

 

The Katie Show sent a car to get us at 12:15pm for the 2:30pm taping (we had car service everywhere!) and a few minutes later we were at the ABC studios. We hung out in the green room for a bit with a handful of other people before I was brought up to hair and makeup.

 

 

Hanging Out In The Green Room

 

 

Cheese Platter In The Green Room - Ewe!

 

 

After hair and makeup we went back to the green room and I went over the segment with the producer. I was really worried about being asked questions I wasn't prepared to answer and sounding like an idiot on national TV. Fortunately the producer role-played 10 questions with me, gave me feedback on some of my answers (elaborate more about that point, include details about this point, feel free to show more emotion when you talk) and told me that Katie would probably ask me 8 of the 10 questions we went over. Whew! No surprises!

 

 

Almost Time For My Interview

 

 

Before I knew it my time to go on had come. We were watching the show from the green room and when my segment got closer they brought me upstairs to go backstage. David had the option to sit in the audience or stay backstage, so I asked him to stay backstage so I could see him immediately before and after I went on. After a few mic checks and several minutes of sweaty palms and my heart beating out of my chest, I received the queue to walk on stage. Don't trip! Don't trip! Don't trip! And .. OMG it's Katie Couric! We're shaking hands! We're hugging!! I just hugged Katie Couric!

 

 

Just Me & My Buddy Katie Chatting

 

 

The whole interview was surreal. Although I was extremely nervous the whole time I was on camera I felt that my interview went well, and that I was able to adequately answer all of the questions. The tutu that I had made Katie was placed behind my chair and we were supposed to pull it out at the end. As soon as we cut to the commercial break after the interview ended Katie said "Oh no! I forgot the tutu!"

 

 

Tutu Photos With Katie

 

 

During the break someone brought out the tutu I had made Lynda Carter which I put on and Katie put on the one that I had made her. I later saw that she (or most likely her social media manager) tweeted out the picture and she also replied to my tweet about meeting her that day.

 

 

Rockin' The Tutus With Katie

 

 

Overall the whole experience was amazing. Never in a million years would I have thought that I'd meet Katie Couric. Never in a million years would I have thought that the innocent request for a photo of Tara and I would result in tutugate. It's been two weeks now since the media storm started and the whole experience has been one crazy ride. We've helped raise almost $7000 for Girls on the Run and the fundraising and sponsorships haven't yet ended. I'm pretty sure everyone now agrees ... #tutusrock.

You can view our whole interview here.
 

 

 

 

 

#tutugate to #tutusrock

Assuming you have the Internet and haven't been out of the country for the past week, I'm pretty sure you've heard about Tutugate ... aka when Self Magazine called a cancer survivor marathon runner lame. Well that lame runner is me!

 

 

Back in February Tara and I got a request through our Glam Runner website from a Self photo editor for a high res photo for a "write-up on running tutus". We were immediately excited and happily sent along a photo of us at the LA Marathon back in March 2013. This was a special race for us and a monumental day, and we were thrilled over the prospect of being featured in the magazine. (More on my blog LA Marathon: Powered by Chemo.)

 

 

LA Marathon - March 2013

 

 

Fast forward a couple months and I had totally forgotten we had even sent in the photo ... until a friend of mine texted me the picture. (Just the picture alone, not the caption around it.) I immediately got excited and ran out to get copies for friends and family. I scoured a couple drug stores and was unable to find it, but David was able to pull up the digital issue on Next Issue. Insert jaws dropping onto the floor. They used us in the "BS Meter" column where they rank things from Legit to Lame. We were sadly on the lame side. I couldn't believe it and went back to make sure I didn't misinterpret the email. I hadn't. The request didn't say how the photos would be used. Should we have asked? I then texted the picture to Tara and posted it on my personal Facebook page. After being validated by the outrage of my friends, I then posted it on our Glam Runner Facebook page. The story blew up from there.

 

 

Self Magazine BS Meter

 

 

I was contacted the next day by a reporter from NBC 7 in San Diego who wanted to do a story on this incident. I asked David "Is this really news? Should I say yes?" I decided to say yes but didn't think the story would go far. I was wrong. The story first aired last Wednesday night at 4pm. By 7am the next morning it had almost a million views on the website! Are you kidding me?

 

NBC 7 Interview - The Beginning of the Storm

(View the interview here)

 

That next day CBS contacted me and wanted to do a feature for the CBS Morning News. Really? I couldn't believe how many people were interested in the story!

CBS Morning News Feature

(View the interview here)

 

 

I saw on twitter that the story was spreading like wildfire among runners, and then among other people as well. People were outraged that we were being made fun of, and started posting disparaging tweets directed at Self Magazine and the Editor in Chief, many proclaiming that they were cancelling their subscription and never buying Self again.
 

Front Page of Yahoo!

 

Over the next few days the storm continued. The story was getting picked up everywhere and friends started sending me links from various websites running the story. I was shocked when I saw the story make it to USA Today (article), Huffington Post (article), HLNtv (article), Yahoo (article), Perez Hilton (article), and many others. It was even the top trending story on Facebook. Was this real life?

Trending on Facebook

 

 

The Editor-in-Chief of Self quickly tweeted an apology to us, posted one on facebook, but the Self bashing continued. I was really surprised by how much outrage there was over the story, and I hate to think that it was ONLY because I have cancer. I guess even worse than just having cancer, I have cancer and we also make tutus to donate a portion to charity. How dare they make fun of a cancer patient? Well hey, what about the non cancer patient? My friend Tara was right by my side in the picture and is my 50/50 partner in Glam Runner and I'd say only 20%  of the posts I saw got past the part where I have cancer and started questioning why a magazine was running a snarky piece like that at all, especially in a magazine that was supposed to empower women. Shouldn't we as women be here to lift each other up? Shouldn't we support each other to be individuals and to be confident in who we are?

Love This Meme

 

 

Throughout the whole media storm I was actually never 'mad' at Self. If anything I was hurt. I felt betrayed and misled, and was kind of embarrassed to be called lame. The Self Editor-in-Chief reached out to me and wanted to apologize amidst all of the frenzy, and on Friday I finally had time to give her a call and ended up talking to her for almost an hour. She apologized a million times, told me that the piece doesn't embody what Self is all about, told me that they're getting rid of the whole BS meter feature, and defended the magazine as being a huge supporter of cancer survivors and Girls on the Run, two types of charities that our tutus have raised money for. I accepted the apology and did a phone interview which was posted on their blog later that day, but the social media hate monsoon continued.

Self Blog Interview

(Full article here)

 

 

On Friday I was also contacted by the Today Show and the Katie Couric show. OMG!! I confirmed with the Katie show first and promised them that I wouldn't do any other national interview before their show aired. That means I turned down the Today Show, and later turned down Inside Edition. Was this really happening? I couldn't believe it.

Interview with CBS at the #tutusrock Beach Run

 

 

Before this whole Tutugate debacle started we had a little over 1000 Glam Runner facebook fans. That's from three years of being in business! Over the course of four days we skyrocketed up to 36,000 fans. Really. With that came a flood of orders. We had to take down the ordering page and instead put up a donation page for Girls on the Run San Diego. Within a few days we had raised $4500 for them. It has been amazing! Tara and I make tutus at home after work or on the weekends. Since we try to have lives outside of work and making tutus, we usually only make a few a week, and that is about the demand that we have. We suddenly had a month's worth of orders in a few hours. Insane!

Tutu'd Runners at the #tutusrock Beach Run

 

 

This whole mess has really resulted in a number of positive things though and while I kind of wish it hadn't happened in the first place, I think nothing but good has come from it. It started a conversation across the country about bullying and judging others for what they are wearing. It has raised a lot of awareness about Girls on the Run, the organization that we are Board Members for, former coaches for, and that we help raise money for. And it has shown us how much our friends and family love us, but also how much love and support strangers can provide as well.

Glam Sisters for Life

 

 

It has been exactly three years since Tara and I started Glam Runner, and I'm so glad we did. We've had a lot of fun, we've made a lot of people smile, and we've been able to do a lot of good with something as simple as a few yards of tulle and an elastic waistband.

(Click here to donate to Girls on the Run San Diego.)