As many of you know, Randy Pausch, passed away during our Summit. The inspirational woman I told you about earlier, Suzanne, had testified with him on Capital Hill. One did not need to know him, to be saddened by this terrible news, but it was particularly poignant for our group. Every diagnosis, every death, every hardship a survivor faces, touches our soul. Tomorrow night, Prime Time Live will do a show regarding his life at 10 Eastern.

In the closing session, when reviewing the winning videos from each group, many of us learned that one of the leaders was the mother of Get To Know Jack (see earlier blog to watch it). She came on the stage when announcing winners from her group, and said that she had held it together until that moment, and her voice quivered as she told us that her little Jack was doing well. The next few moments did not leave a dry eye in the large auditorium as the thousand delegates + all stood and applauded her and her son. Whew. It was an emotional weekend.

Another emotional note... The Ohio State University president, Dr. Gordon Gee, found the strength and courage to participate in the final panel with Dr. Sonjay Gupta, Dr. Bernadine Healy, and Lance on Sunday. I don’t know if it was national news, but his daughter and son-in-law were in a terrible accident as the Summit started. His son-in-law passed away on Thursday, and he shared the very personal moment as he passed, with his daughter climbing into the hospital bed with her husband (she herself a patient-who’d been flown from her hospital to where he was, when his condition worsened) and helped him to pass peacefully.

Then, on my way home in the airport, I learned of a high school friend and close friend to my brother, being diagnosed with pancreatic cancer with mets to his liver. I believe Tim is 48. He IS too young for this and it isn’t fair. An organization I learned about from a survivor in my group, www.ImTooYoungForThis.org, sums up in a nicer way than I felt in hearing this news: “STUPID CANCER”. They have buttons, magnets, cards, etc. that use the slogan. Yes, for a non-survivor, it may sound a little crass, but believe me when I say, THAT is putting it nicely.

Within this short weekend, I learned of two very serious cancers that have effected our family personally. I know that anyone reading this has most likely had this same experience. As Jack said, “What will you do?”

Other notes:
Dr. Harold Freeman: A “soul” brother to Lance, physician, and patient advocate, he founded the Ralph Lauren Center in Harlem and pioneered the patient navigation movement.

He told us the story of his great, great grandfather being a slave in Raleigh, NC in 1838. His name was Walter. He bought his freedom for $3,000 and he gave himself a last name ... Free Man or Freeman.
He said we’ve corrected injustice in the past and we can correct our health care system’s injustice. People should not die from cancer because they are poor or uninsured. One third of Americans are not getting the treatment they need. There are 47 million uninsured, 25 million underinsured, and 32 million on medicaid with no difference in outcomes than uninsureds. He spoke quietly, powerfully, and passionately, about these disparities and ended with saying he wanted to be a “Drum Major for Justice”. It was an honor to be in his presence.

Another moving keynote came fromStephanie Spielman whose husband is former NFL player, Chris Spielman. She spoke of his decision to take a year off during her treatment to take care of her and their kids after she was diagnosed with breast cancer 10 years ago. Amazing. She started an organization that celebrates the caretaker. She wanted her kids to see their mom turn something bad into good. You can watch her keynote and some of the others from a link on LIVESTRONG (blog).

Other notes on tobacco: One third of cancer deaths are caused by tobacco. Lung cancer is underfunded because we blame the victim. Many never smoked. Senator McCain told of the army giving away tobacco to soldiers when he served. He stopped, but feels we must reduce and eliminate all tobacco products in the US. Approx. 15 billion is spent to market to our youth. Its estimated that in the 21st century in China alone, there will be a billion deaths from tobacco. Almost half of our states are smoke free, so there is progress and hope here in the US.

Read about the first ever National Call to Action in earlier blog.

Remember:
1 in 3 women and 1 in 2 men will have cancer in their lifetime.
Cancer costs our country 1/4 of a trillion dollars each year
1500 Americans die each day from cancer (a 9-11 every other day)

The human and economic cost of cancer is unsustainable.

If you are not sure what you can do, start by going LIVESTRONG and join the army! And don’t forget to watch STAND UP FOR CANCER on all the major networks, September 5, 2008, at 8pm. Go to the web site standup2cancer.org to get involved! It’s the most promising time in research. We CAN find a cure in our lifetime. We are starting a movement in our country that won’t stand for the human and economic cost of cancer any longer. Make sure your representatives support the same!

We have been busy the last few days in different tracks from fundraising, advocacy, elections, to community. I was in the advocacy track. We had excellent teachers who gave us hands on practice with skills to take back to our communities.

For example:
Each group made a 60 second commercial in which we were judged on getting our messages out effectively (Making Cancer a National Priority). The winning video from each track will be shown in the closing session.
We had simulations of meeting several different senators for 3 minutes each, to get our message out. We were evaluated on our effectiveness.

We were encouraged to go back and make our own videos and share on YouTube.
An inspirational video they showed as a great example, is on YouTube. It is a MUST see... Get to Know Jack

There is so much more to share, but little time. Back with more later.

What has struck me most these few days, were the dedicated, hard working delegates, who each came to the Summit with their passion to make a difference and a history of already doing great things. Many, spurred by their personal survivorship, have started organizations or programs to make life better for other survivors. The love, compassion, and kindness they demonstrate is humbling. The courage to push on through adversity is inspirational.

One such woman, Suzanne, came to the conference after being handed a diagnosis 4 months ago, of not living another 3 months. She has lived with metastatic disease for 10 years and has a story of beating the odds time and time again. Yet, somehow, she still has time to give. In the last 6 months, she’s been on Capital Hill 13 times. Her quiet, gentle spirit may fool you in to thinking she isn’t a powerhouse. But trust me, she is one of the most powerful, courageous women I’ve ever met.

This is one example of the LIVESTRONG Army. The stories of courage and determination to fight through great odds to make life better for others will never leave me.

Help us make cancer a national priority. Ask your representatives if they are voting yellow!!!

I found a picture of Suzanne and I talking, on the LIVESTRONG web site. It was a special moment that I will never forget. Her organization’s website is: www.y90support.org

Unveiled at the Summit was a new Battle Plan for the WAR ON CANCER.

In October 2007, Richard H. Carmona, M.D., M.P.H., FACS, 17th Surgeon General of the United States (2002-2006) and President of the non-profit Canyon Ranch Institute, brought together the former Surgeons General of the United States to address national and global public health issues. At the request of LAF Chairman and Founder Lance Armstrong, four former United States Surgeons General collaborated with the cancer prevention and survivorship community to develop the National Call to Action on Cancer Prevention and Survivorship.

The four goals of the National Call to Action on Cancer Prevention and Survivorship are:
Empower Healthy Lifestyles to Prevent Cancer
Apply What We Know About Cancer Screening and Early Detection to All People
Ensure that All People Can Navigate Through the Health Care System
Provide Survivorship Care Plans and Systems of Support for All Cancer Survivors

To download or read more about the plan click here:
National Call to Action on Cancer Prevention and Survivorship

Wonderful keynotes were a treat. Pictured here is Richard Karmona, our 17th Surgeon General. Dr. Harold Freeman ended the day with an inspiring keynote (not pictured). More to come...
Below is our fearless leader...


The OHIO STATE campus is incredibly beautiful.


After the incredible day of learning, we went to a Rib and Jazz festival on the river! What a treat!

An incredible violinist from Key West played on the street to expose this instrument to those that normally wouldn’t experience it.
A street sign in downtown!!!!

A National TREASURE... the Ohio Theatre... built in 1928, a MUST SEE when you are in Columbus. We happened to walk by and the door was opening for a late movie. I asked if we could just peak in, and normally they do not allow that. However, the director happened to be walking by and gave us a personal tour. These pictures don’t come close to giving you a taste of the opulence, so go to their website here to get a glimpse.
Pictured here with the director, Charles Hammerle, are Pam and Suzan.


The beautiful skyline from a special patio on the concierge floor.

This year the Summit began on an emotional note again. Last year in the opening session I learned of a colleague losing her battle with cancer, who I had planned to be with during the week, preparing for a presentation we were doing together at ACSM. It reminded me of the reason I was there in a very personal way. She was a strong, caring woman who dedicated her life to helping other survivors live healthy lives after a diagnosis.... Karen Hornbostel from Littleton, Colorado.

Ironically, this year, I received a call from a relative in Littleton, Colorado, minutes before the opening session (I live in NC, by the way, and have never lived in Colorado, so that is the irony), telling me of their 18 month old granddaughter being diagnosed with neuroblastoma. The unfairness of children dealing with such a disease, as well as the parents, family, and loved ones is just too much to bear. But again, my purpose for being here became clear.

I promised I would do what I could to gather answers for them, explaining that this might be difficult, because the focus with LIVESTRONG is adult cancers. As I entered my “advocacy” learning track for the weekend, the 150 in this auditorium were divided into 15 groups. Out of the 1000 delegates, there was a physician in my group who wrote her thesis on neuroblastoma.

What I know for sure, is that sometimes, there are plans in our lives, that we have no idea about. There are things that happen that are more than coincidence. I also know that I am surrounded by passionate people who are leading this war on cancer as a unified group, and I am grateful. Mike, our thoughts and prayers are with your family.

A sign of good things to come for the week, was walking up to a woman wearing yellow and black in the Nashville airport... “Are you going to the LIVESTRONG SUMMIT” I asked? Indeed she was, as she turned out to be the Chief Operating Officer of the LIVESTRONG organization! We sat on the plane to Columbus and shared a cab ride to the hotel. It was a gift to hear about the organization from the top. She has a huge job, but it was evident that she had it all under control. Thanks for all the hard work you do, Betty!

To set the tone for the week, a Town Hall Meeting with Senator McCain was held on THE Ohio State campus tonight (Thursday). Senator Obama was unable to attend, but we were assured the same questions would be asked to him at a later date.

At registration we were given bright yellow T-Shirts to wear to the Town Hall meeting that said “Vote Yellow” on the front, and on the back was a definition of “Vote Yellow”(vot • yel-o) :
1. n. An expression of choice made by 12 million cancer survivors and their loved ones. 2. v. To declare one’s opinion that our leaders should make cancer a national priority. 3. n. A philosophy believing it unacceptable to lose 560,000 Americans to cancer each year. 4. n. LIVESTRONG!™

So we had a sea of yellow move from the reception at the Ohio Statehouse to the large auditorium on THE Ohio State University. We were searched carefully as we entered the auditorium by the Secret Service...

Before the discussion with Senator McCain, Paula Zahn (host), Lance, and the Senator said a few words, individually. I was so pleased to hear that Paula Zahn is a tireless advocate for cancer related stories in the media. Both her parents had been diagnosed within a few weeks of each other back in 1983, and that 6 weeks after, a sister-in-law was diagnosed with an aggressive breast cancer (and not detected early enough). She insisted that we MUST be our own advocates.

Before Lance came out, the “Maybe Tomorrow” theme song was played (you can download on iTunes) and the LIVESTRONG manifesto was posted:

THE MANIFESTO OF THE LANCE ARMSTRONG FOUNDATION
We believe in life.
Your life.
We believe in living every minute of it with every ounce of your being.
And that you must not let cancer take control of it.
We believe in energy: channeled and fierce.
We believe in focus: getting smart and living strong.
Unity is strength. Knowledge is power. Attitude is everything.
This is the Lance Armstrong Foundation.

We kick in the moment you’re diagnosed.
We help you accept the tears. Acknowledge the rage.
We believe in your right to live without pain.
We believe in information. Not pity.
And in straight, open talk about cancer.
With husbands, wives and partners. With kids, friends and neighbors. And the people you live with, work with, cry and laugh with.
This is no time to pull punches.
You’re in the fight of your life.

We’re about the hard stuff.
Like finding the nerve to ask for a second opinion.
And a third, or a fourth, if that’s what it takes.
We’re about getting smart about clinical trials.
And if it comes to it, being in control of how your life ends.
It’s your life. You will have it your way.

We’re about the practical stuff.
Planning for surviving. Banking your sperm. Preserving your fertility. Organizing your finances. Dealing with hospitals, specialists, insurance companies and employers.
It’s knowing your rights.
It’s your life.
Take no prisoners.

We’re about the fight.
We’re your champion on Capitol Hill. Your advocate with the healthcare system. Your sponsor in the research labs.
And we know the fight never ends.
Cancer may leave your body, but it never leaves your life.
This is the Lance Armstrong Foundation.
Founded and inspired by one of the toughest cancer survivors on the planet.

LIVESTRONG™

Lance acknowledged his mother in the audience and welcomed the ARMY. He said we were fighting a war that loses 1500 Americans everyday. He talked about a comprehensive approach being needed , and outlined those in his talk.

Overall there was a great discussion with pointed questions by both Lance and Paula.

I think one of the most compelling things I heard in the evening, was that though lung cancer is responsible for 1/3 of the cancer deaths, the tobacco money sent to each state is not being used as it was intended. NOT IN ONE STATE. Senator McCain said we should be asking our political appointees about this and holding them accountable. The Senator said corruption in congress was/is a major roadblock for getting things done, and said he intended to clean things up (after Paula asked him to elaborate about HOW it was corrupt). He wants to reduce and eliminate the use of tobacco products in the US, another surprising comment from this melanoma survivor.

To view the meeting, and hear more about it, go to the official blogger at:
http://livestrongblog.org/

PICTURES OF GERMAN VILLAGE IN COLUMBUS

DELEGATES AT A RECEPTION BEFORE GOING TO THE TOWN HALL MEETING WITH SENATOR MCCAIN AT THE OHIO STATEHOUSE.

In traveling to Columbus for the second ever LIVESTRONG Summit, I reflected back on my journey of survivorship and why the topic of survivorship should matter to anyone. I thought to myself of the comments I’d sometimes heard about why so much is made of survivorship, from survivors and non-survivors alike. “Why don’t they just get over it and move on? Why do they wear it like a banner? I mean, millions of people survive and live with chronic disease, tragedy, and other life altering events.”

WHY SHOULD ANYONE CARE ABOUT CANCER OR CANCER SURVIVORSHIP? WHY SHOULD CANCER BE A NATIONAL PRIORITY? WHY SHOULD WE ELECT OFFICIALS THAT WANT TO MAKE CANCER A NATIONAL PRIORITY?

1. Because we CAN find a cure in our lifetime if we make it a priority... so we can leave a legacy that our children and grandchildren will not have to face cancer.
2. Because it is costing our country 1/4 of a trillion dollars a year
3. Because we are losing too many good Americans in this war: 1500 cancer deaths every DAY.
4. Because chances are, it will be you one day... one of two men and one of three women will face cancer in their lifetime

As survivors we are a very large, motivated group, because we understand the issues in a deeply personal way. We can have a huge impact, as survivors and co-survivors in this fight.
1. IMPACT on individuals and society
We are not unlike those who have experienced other life altering events. However, we are a large group of 12 million and growing. Our co-survivors are impacted as well, so the numbers double, quadruple, and multiply to an infinite level of impact. The quality of life issues that impact us as survivors, also impact those around us. From families to employers, and even a broader scope, our economy.
We are living longer with new treatments that keep us around, when years ago we didn’t make it. As grateful as we are for the treatments that have kept us alive, we often have long lasting side effects that impact our overall health and well-being and quality of life. Aggressive cancer treatment, in particular, leaves no part of one’s life untouched, spiritually, emotionally, mentally, physically, financially, or socially. The impact is different for everyone, depending on individual treatments, but there is no doubt impact, even with the smallest of cancers and treatments.

2. IMPACT on finding a cure
As a large group we can effect change to find a cure for cancer, just as we have for the many diseases that have impacted human beings since the beginning of time, such as polio. Mike Milken,  Chairman of Faster Cures, noted philanthropist and prostate cancer survivor said at the last SUMMIT, we need to see the world of cancer through new eyes "Doing things the same old way doesn't lead to breakthroughs." He also used the example of Elvis Presley getting a polio immunization in the 50's to demonstrate how one person can make a huge difference.  "Before that photo was taken of Elvis getting that shot, there was a huge opposition to getting that immunization.  Afterwards, everyone got it - and as a result polio today has essentially been eradicated. 

3. IMPACT on reducing cancer deaths
There are things we can do to reduce cancer deaths, TODAY. Early detection saves lives. With a large group working to create awareness of these issues, we can dramatically change the cancer death rate in our country. Harold Freeman, director of the Ralph Lauren Cancer Center, says we need to close the gap between what we know and what we do. For EARLY DETECTION, cervical cancer has a 100% survival rate, breast 98%, colorectal 60%
See www.KnowYourDensity to the left about what women should know about early detection of breast cancer

TOGETHER, WE CAN ALL MAKE A DIFFERENCE!!!!

This is a summary of the exciting events of the first Livestrong Summit in Austin Texas, including summaries of keynote speakers, including Steve Case, Mike Milken, John Kerry, and Elizabeth Edwards. Read More...