Riding for Roses

We are all busy and advocacy can be hard work. So, let’s make it simple. Visit the Lance Armstrong Foundations Take Action Now page and send two quick faxes or emails to your Senators and Representative asking them to support cancer research and survivorship issues.

It is easy. It takes five minutes if you take the time to customize. While you are there, sign up to join the LAF advocacy team and receive their (occasional) email newsletters on future advocacy issues.

It’s time for our nation to address our issues. Together, we can help change things for the better. As a team, we can make a difference for survivors.” – Lance Armstrong

Today is Livestrong Day – a day to celebrate cancer survivorship and take a moment to advocate for change. I’ll be posting several times today with simple actions you can take today to help fight cancer. I will describe what I am doing today and how you can join me in the fight against cancer.

Why do we need strong advocacy in the fight against cancer?

• in 2005, it is estimated (final numbers are not yet available) that 1,500 Americans died every day from cancer.
• the 2006 United States Budget reduced funding for the National Cancer Institute by $31 million.
• the five year survival rate for young adults with cancer has not improved in thirty years.
• the proposed 2007 United States Budget further reduces NCI funding by $40 million.
• in 1960, the overall five year survival rate for pediatric cancer was 4%, today it is 80%.
• Three out of every four families in the United States will have at least one family member diagnosed with cancer.

Think about the numbers. Think about the loss. Think about the opportunity. Join me today in fighting cancer. Come back here later. While you are waiting, make a small donation to fight cancer and support my six year old son, Spencer, who is riding 40 miles with me again this fall to raise money for the Lance Armstrong Foundation.

The Unicorn Players of Live Oak Unitarian Universalist Church are presenting “Blackpool & Parrish”, a play by David Belke this month at Live Oak Unitarian Universalist Church at 3315 El Salido Pkwy; Cedar Park, TX and donating half the proceeds to the Lance Armstrong Foundation in support of Spencer. Tickets $10 at the door or call the church for more information. Please come out to see this play by a wonderful local theatre group. Spencer and I will be at the May 20 performance as ushers.

bq.Harry Blackpool is the representative of all that is Evil on the planet Earth. Rachel Parrish represents the Good. After two thousand years of rivalry they are ready to pass their roles to their children. With the Apocalypse due tomorrow at tea time, is there any way to save the world? And doesn’t humanity get any say in the matter?

The play will be presented four times:

• May 19, 7:30 PM
• May 20, 7:30 PM
• May 26, 7:30 PM
• May 28, 1:30 PM matinee

Fighting cancer is hard. It is many diseases. It requires many cures. The cures have side effects ranging from annoying to awful. How can we fight such a multi-headed beast? Start with some simple steps:

1. Join what Austin Murphy calls Amstrong’s Army of cancer advocates. This is the online registration to be involved in the Lance Armstrong Foundation’s advocacy actions.
2. Donate to the Lance Armstrong Foundation and support Spencer in the Livestrong Challenge Ride. We are riding 40 (70 if Spencer can convince me) miles to fight cancer on October 8, 2006. Spencer wants to raise $15,000 or more to support the LAF.

They are simple, concrete steps. You can do them right now. If you do not like donating online, you can download a form and mail it. If you do not want to donate, please sign up for the advocacy group. It will give you the opportunity to remain aware of national issues and the chance to advocate for funding and support in the fight against cancer.

Spencer with Lance Armstrong in Sports Illustrated

The phone rings on April 18. Austin Murphy is writing the story about Lance and wants to talk about the Sports Illustrated cover photo. Spencer is home sick and is happy to talk with Austin – as long as I leave the room while they are on the phone together. Austin is looking for a little information about what was going through Spencer’s mind during the shoot when the photographer was asking the survivors to show their cancer experience in their eyes. Austin is either curious or forgiving of my desire to share Spencer’s story. Before I know it, we have talked for almost half an hour.

Spencer takes his turn. I leave the room. I’ll never know all of what he said, but clearly part of it was about hating all the shots and needle pokes. I hear the cordless phone beep that it is running low on battery and I bring in the spare. As I walk into the family room, Spencer says “hold on”, puts down the phone, and starts to do push ups. I turn on the backup phone and finish the call with Austin, but not before reporting that Spencer did 35 pushups¹. Apparently they were talking about what Spencer does in his Tukong martial arts class and Austin asked how many pushups Spencer could do. I tell Austin how Spencer started back at martial arts class when he was still not always able to walk from his bedroom to the kitchen and how Master Ali Brown gave Spencer private lessons to help him regain strength until Spencer was able to fully participate again in the group class.

Austin Murphy’s article The Next Stage is available on the Sports Illustrated web site. Here’s a taste of what he has to say:

Spencer is a foot soldier in what could be called Armstrong’s Army, a generation of cancer patients who are the opposite of passive victims. They are, like him, warrior-survivors. If he walked away from the fight today, that would be his legacy. But he isn’t walking away. He’s just getting warmed up.

As always, talking with someone about cancer survivorship is rewarding and fun. Remembering the good times reminds me of the happiness. Remembering the hard times reminds me of hope, but I also remember that we have it easy compared to many. Cancer is hard. It is, as Lance says, one tough hombre.

If you have a cancer story, please share it here or at the LAF Share Your Story web site.

Soon, I’ll formally announce Spencer’s effort to raise money this year for the LAF. He wants to help cancer survivors and defeat cancer – and maybe get to spend a killer weekend with supporters, cancer survivors, and Lance.

¹ Austin, if you are reading this: Spencer was unsatisfied with that number and did 50 later in the day just to prove it.

In April, the Rolodex effect snowballed.

KLRU filmed Spencer’s rock climbing class, a visit to the oncologist, and came by the house to interview us (Spencer, Rachel, and me). Spencer banished Rachel and me to our bedroom (with his brother Jacob) while he was interviewed so that he would be able to speak without being self-conscious. I was completely unfair to Rachel. She went first, so she got all the mechanical questions about diagnosis and treatment. That inevitably starts to sound a little self pitying. I went second, so my focus was more on recent events and positive things. It may come off sounding like Rachel is a pessimist and I am an optimist, but that is not the full story. I think in the end, all of us are taking away the positive as well as the negative from Spencer’s cancer. I find myself pleasantly surprised to say that the positive is currently winning.

Tuesday, April 4, Jacob was sick with what turned out to be an asthma attack, though we did not fully figure that out until last week. Jacob and I were headed out the door to get Spencer at school when my cell phone rang. It was someone from the LAF calling. She told me they had an urgent need to get a bunch of cancer survivors together for a photo shoot with Lance the following afternoon. It seems Sports Illustrated was planning a big article on Lance’s plans after retiring from cycling and they wanted a photo (possibly for the cover) with Lance and some cancer survivors.

While we at the photo shoot, we talked to some people from Alpheus Media about participating in shooting for a new video for the Livestrong Gala to be held in Austin on May 19. I wrote about the flow of images and emotions from reading the LAF Manifesto earlier. It was an intense and positive emotional experience. Spencer was also in a sequence they were calling “Chemo Kids” shot the same day we did the interviews with KLRU.

At this point, I assumed Spencer’s little media explosion had peaked and we would head back to normal life. Then the phone rang again….

Never discount the Rolodex Effect.

It turns out there are at least two feedback cycles. One is that, being in the media makes you worth covering. The other (stronger I believe) is that Spencer (and I, his publicist) wound up in the rolodexes of several people at Children’s Hospital of Austin and the Lance Armstrong Foundation as being willing to talk to media and at least tolerably photogenic. As a result of the Rolodex Effect, I received a couple of phone calls early in the year.

One call was asking me to participate in St. Baldrick’s in Austin. St Baldrick’s is an event where people shave their heads to raise money for pediatric cancer research. As soon as Spencer heard about it, he challenged me to see who could raise more money. He kicked my butt. Then he shaved my head before a professional shaved his. The St. Baldrick’s web site has an article about Spencer shaving his head for charity that includes a pointer to the KEYE News Story about St. Baldrick’s here in Austin.

The other call was asking us if we would be willing to be taped and interviewed by KLRU, Austin’s PBS station, to do an episode of their Austin Now news magazine. They will be airing an episode in June covering pediatric cancer as a tie-in to the airing of Lion in the House – a compelling documentary on pediatric cancer that follows several patients from the moment of diagnosis. KLRU dropped by the St. Baldrick’s event and shot some B roll in preparation for more to be done in April.

Come back soon for step 5 – our busy April.

Tour Watch 2005 turned out to be a critical part of Spencer’s fundraising success, along with a raffle at my favorite coffee shop, the “It’s a Grind” at 620 and Anderson Mill in Austin. I blasted out notes to the reporter at KEYE who had done a great story about the Tour Watch and told her Spencer had succeeded – in spades. Spencer had raised $32,543 for the Lance Armstrong Foundation and we were headed down to Austin’s Hyatt on Town Lake for a weekend with other fundraisers, many of them cancer survivors. Spencer loaded up with a record 52 wrist bands to start the weekend (and the interview). Leslie Coons from KEYE met us at the hotel where, before we even got in the front door, Spencer was giving away wrist bands. Spencer made me walk away from the interview so he would not be nervous.

The Ride for the Roses weekend is an incredible thing. As a yellow jersey rider, Spencer attended several events. Every event is attended by cancer survivors and people who raised large amounts of money to support the Lance Armstrong Foundation.

Saturday morning, they held a big event for kids with an adventure race at Austin’s Auditorium Shores. Spencer brought his friend Oliver to participate in the kids’ adventure race. Before it started, we did a live feed for one of the morning news shows, inviting people to come down and participate in a day celebrating cancer survivorship. After the kid event, we went to the Livestrong Village and got a couple of books signed. After Spencer got Linda Armstrong Kelly to sign his copy of her book, he noticed that Grace and Isabelle Armstrong did not have wrist bands on that morning, so he gave one wrist band to each of them.

I could, and at some point should, go on and on about the events we attended and the people we met at them. It is an indescribable good to share stories and spend fun time with a group of dedicated cancer survivors and supporters. I believe that a critical element of thriving in cancer survivorship is attitude. Attitude is everything. It might not make you live longer, but it will make whatever life you have worth living.

Spencer got his dream that week. He got to meet Lance and go for a bike ride with him. Thanks to the great folks running the Peloton Project at the LAF there was a short, slower ride for kids and cancer patients still in treatment. We got to ride with that group, listen to Robin Williams joke as he rode behind us, and we beat Lance Armstrong up a hill just outside Austin¹. By the end of the weekend, Spencer had one wrist band on each wrist, having given the other 50 (and then some since we had a bunch in our luggage) to people who seemed to need one.

Stay tuned for more of the oddball thing that is Spencer Sartin’s unpaid Media Career. I filled out the paperwork last night. The big news should be official tomorrow or Thursday. Step 4 in the contorted path will be posted tonight.

¹ Spencer requires that when I tell this story, I also disclose that at the time we beat Lance Armstrong up a hill, Lance was, in fact, pushing us. Looking at the photo however (which I don’t yet have rights to post here), it appears that Lance may actually have been holding us back. I think we had him beat.

Apparently my Google page rank is just high enough that some people find my blog on purpose. Two people found the 24 Hour Fitness entry, leading to an exciting July.

First, Paul Walhus, who attended the 24 Hour Fitness event contacted me with pictures. Paul was organizing Tour Watch 2005 – an event at Austin’s Central Market to watch the Tour de France. I hooked up to do cancer awareness raising and fundraising for Spencer’s attempt to raise $25,000 for the Lance Armstrong Foundation and a private ride with Lance. Second, a producer working for the Discovery Network on a show about fans of Lance got in touch with me. For extra coincidence points, I had just added email contact information to my blog which enabled that connection. They were coming to Austin to tape and wanted to include us. Their visit was to be before and during the start of the Tour de France.

The Discovery crew came and interviewed all of us several times, filmed our day to day activities, observed at a class we took at Wonders and Worries, followed us to a visit to the oncologist, and gave Spencer an afternoon special tour of the Driskill Hotel. Children’s Hospital of Austin is very supportive of the media attention and the Discovery Network crew work with PR and Child Life specialists in setting up the filming so that there are no privacy problems. At the oncologist visit, Spencer’s counts had plunged faster than we had expected and he went on limited exposure restrictions. He still wanted to visit Tour Watch. He was amazing. He played computer games with kids and our State Representative, Mark Strama. He interview with several TV shows, including Dutch television, and was also mentioned in the Austin American-Statesman article about cancer survivors inspired by Lance and the Tour Watch event. In addition to all of the awareness raising, Spencer managed to raise several thousand dollars in donations to the Lance Armstrong Foundation.

In May, 2005, Lance took a tiny break from his European cycling schedule to come to the states. Among the things he did on that brief visit was attend an Austin opening of the newly branded 24 Hour Fitness Lance Armstrong Sport Club. Spencer wanted to go and see Lance. He loaded up and was wearing a total of 38 wrist bands. He gave a couple away and received one as a present from a staff member resulting in 37 as the official count. Somebody also gave him a Discovery Team Jersey which he immediately put on over his shirt. With Lance, plus JB and Sandy there was a lot of media attention. Decked out in Discovery Kit and the buried in wrist bands, Spencer got some attention as well. It was a kick being on the local news.

Naturally, I bragged about it on my blog so my seven regular readers (mostly relatives) could hear about it.

Come back tonight to find out the second step in Spencer’s media career leading up to fun and excitement this week.