Five months ago, one of our volunteers, Rob Michelson, suggested that C3: Colorectal Cancer Coalition send a request to the New York Stock Exchange (NYSE) to ring the Opening Bell during the month of March, which is Colorectal Cancer Awareness Month. Rob works for the NYSE.

We sent off the letter but said to ourselves, “No way that’s going to happen” (we consider ourselves realists, not pessimists). But with Rob’s tenacity and hope – the same stuff that is getting him through his colorectal cancer fight – we managed to get a last minute invitation late on Friday, March 2^nd, to ring the opening bell last Monday, March 5^th.

We leapt at the chance. What follows is what happens when a neophyte advocacy group like ours gets the chance of a lifetime.

3:00 PM, the day before
I am on the train up to New York from Washington, DC. I am so excited that I want to tell all my fellow travelers that I am going up to ring the Opening Bell of the New York Stock Exchange. But I don’t.

8:50 PM, the night before
Our public relations folks have been working the financial media all day today, trying to get them to simply mention C3 and/or Colorectal Cancer Awareness Month as the bell rings in the morning. The push will continue starting at 7 AM Monday. As a former PR person, I have realistic expectations that our chances are slim that we will get our wish. But as the Eternal Optimist, I also have talking points for a 60-second live television interview.

9:05 PM, the night before
I learn that there is a back-up bell in case something goes wrong at the podium. I start wondering if it would hurt or help the organization if I were to do something completely nuts up there. Not a bad-nuts, just a get-us-on-the-evening-news-nuts.

7:00 AM
The morning news is reporting that Asian markets dropped overnight, indicating that the US market will open low. I wonder if this will hurt or help our chances of getting a mention at the bell ringing.

8:35 AM
We are on our way! “Wall and Broad” I say to the cab driver in as bored a voice as possible as if it’s just another Monday morning.

8:45 AM
We make our way through security. Eugene with the NYSE welcomes us and escorts us to our holding room.

When we arrive at the holding room, a group of NYSE staff are waiting for us, including the NYSE photographer. We chat. I give them colorectal cancer Blue Star of Hope pins to wear on their lapels. Everyone is extremely friendly. They are thanking us as if we’ve done them a favor.

The holding room reminds me of the United States Capitol. Ornate walls and columns, painted with gold accents. Thirty-foot high ceilings. The holding room opens into the Board Room, and we go in to look around. There is a clock from the original stock exchange that is 140 years old and a Faberge urn given to the NYSE by Czar Nicholas II.

There are three flat screen televisions on one wall of the Board Room. The center TV has a shot of the podium with the C3 logo above it. My stomach gets butterflies.

The photographer takes a picture of us in the room. I say a silent prayer to the Gods of Nothing in My Teeth.

9:20 AM
Presents! We are each given a gold medallion to commemorate our day. It is heavy and inscribed with a picture of a bull goring what looks to be a goat. I wonder if I’d paid better attention in Econ I’d understand what the heck that means. Below the picture it says, “C3: Colorectal Cancer Coalition Colorectal Cancer Awareness Month Opening Bell Ceremony March 5, 2007.” Might be the coolest thing I’ve ever been given in my life.

9:25 AM
Time to move! We leave the holding room and walk down a short hallway into an elevator, down some stairs and suddenly, I’m on the podium, looking onto the exchange floor, about 15 feet down. It’s not the bustle of activity that I was picturing. There are pockets of people standing on the floor looking up at us. I wave maniacally at them. At stations of computers directly below us, there are others who are completely unaware of our presence. They look concerned. I can’t see what is happening on the rest of the floor, as the view is blocked by the computer stations.

I scan the room for Maria Bartiromo.

Immediately in front of us, about 10 feet away, is a bank of cameras and a large LCD clock. We are instructed to always look at the cameras and not at the folks on the floor.

There are several of us on the podium: the NYSE employees who greeted us in the holding room and three people from C3.

C3 is represented by Rob Michelson, our volunteer who was the driving force behind this. Rob’s a great guy. He has stage IV colorectal cancer. He has had part of his lung removed because his cancer had metastasized there. He’s 40 years old; the father of three.

Officially, the NYSE wanted me to ring the bell, since I’m the head of the organization. But I’m here because I was fortunate enough to have C3 choose me to be its Executive Director. Rob’s here because he’s fighting for his life. We have switched places so that he can be the one who pushes the button.

Standing to my left is Kate Murphy, C3’s Director of Research Communications. Kate’s a legend in the colorectal cancer community. She was diagnosed 23 years ago with stage III colorectal cancer and is a repository of information on the latest in research and treatment for colorectal cancer – which is why she writes C3’s Research News blog. She hasn’t stopped smiling since we arrived and now it looks like she might swoon with excitement.

9:29 AM
The clock in front of us starts to flash. This is our cue to get ready. At 9:29:30, we start clapping. At 9:29:50, Rob pushes the button for ten seconds. The bell is located behind Kate. It is loud.

This is one of the most exhilarating moments of my life.

I promised my husband that I would cough into my hand as a way of giving a shout-out to him on national television. I don’t want to forget to do that. Hilary Swank forgot to thank Chad Lowe when she won her Oscar – and look where that got them.

9:30 AM
Rob’s face as he presses the button is priceless. He could light the earth with that smile. I am moved to tears.

For C3, today’s opportunity was a real gift. In just two days, our web site traffic has increased by 75% percent and we have received attention from all over the country because of it. And we did get mentioned on CNBC and the announcer said that Colorectal Cancer Coalition was ringing the bell in honor of colon cancer awareness month! Time will clearly tell us the effect that it had, but I felt the shift when I was up there on that podium.

Most significant is the impact this will have on the colorectal cancer community. Colorectal cancer patients and caregivers are regularly frustrated by the lack of attention that is given to this disease and they sometimes feel that the world does not recognize how scary, awful, painful and heartbreaking it can be. Today, we stood on the podium, rang the Opening Bell of the NYSE and said to the hundreds of thousands of Americans living with this colorectal cancer, “You matter. We are fighting for you.” It was an honor and a privilege for us all to do that.

 Last fall Rob Michelson, stage IV colon cancer survivor and C3 advocate, came up with a great little idea — have C3 ring the opening bell of the New York Stock Exchange (NYSE) in early March to “ring in” Colorectal Cancer Awareness Month. As Rob works for the Exchange, he knew exactly what we needed to do to make this happen. He helped C3 write the necessary letters to the right people.

We found out late Friday that indeed, C3 will ring the opening bell of the NYSE Monday, March 5. Rob, as well as Carlea Bauman, C3 Executive Director, and Kate Murphy, C3 Director of Research Communication, will be there to represent C3 and the many people affected with colon and rectal cancer.

You can watch the ringing of the opening bell several ways:

• Live on the cable channel CNBC exactly at 9:30 am Eastern;
• Live web cast from the NYSE web site beginning at 9:25 am Eastern; or
• Via an archived version of the web cast from the NYSE web site.

Rob wrote the following in an Advocacy Blog post of his:

“C3 advocates through its action — and that’s what gives it its unique focus within the CRC community and gives it an opportunity to transform the movement for greater impact.”

Congratulations, Rob, for advocating through your actions!

Editor’s note: The death of her brother caused the life of Cheryl Cowles to go in a new direction with a powerful desire to help others. After over 25 years of teaching, she decided to retire and focus on issues related to colon and rectal cancer. She is involved with the American Cancer Society, speaks to groups about early detection, and designed bracelets to generate funds for C3 and cancer research. Next month Cheryl will travel to Washington, DC to be her brother’s voice as a part of Call-On Congress.

My brother Christopher lost his battle with colorectal cancer March 21, 2005. My life changed dramatically that day and will never be the same. Losing someone you love to cancer is not something you can easily put into words. Our family experienced a pain and emptiness that will never be filled again.

Yet in the loss, something else happened for me personally. I wanted his suffering to be for gain, not for pain. After a year had passed, I realized I could honor his life by telling his story and helping others. I also began to understand the bigger picture. I started to search for ways to get involved in the cancer community.

The American Cancer Society (ACS) seemed like a logical place to start. I was able to get involved in several ways i.e. the ACS’s signature event Relay For Life and also I got involved with their advocacy program. Even though I was involved it was not enough as I had a strong need to do something specific for colon cancer so I was glad I finally came across C3: Colorectal Cancer Coalition.

At first I was overwhelmed with the message to Congress that C3 was sending. I hadn’t ever considered the political arena that surrounds health care issues. It was all foreign to me and I didn’t think it was something I could understand let alone get involved in. After all I had no political abilities, or so I thought.

A year passed and I happened to e-mail Nancy Roach, C3 President, asking if she knew of anyone in Colorado that I could hook up with to get an event going in March for colon cancer. Her response to me was “How would you like to go to DC with us for C3 and OVAC [One Voice Against Cancer] advocacy training for Lobby Day?”

What seemed impossible a year before was now in my reach mainly because I was in a whole new place and had grown enough through other cancer-related experienced. I learned a spiritual lesson on the way: God’s timing is everything. Instead of being frightened, I knew immediately that I was going. I was so excited I told everyone I knew. What made such an impression on me was here was this person, Nancy, who didn’t know anything about me except that I was passionate about doing something positive for colon cancer and she had faith in me that I didn’t have in myself.

Needless to say the experience was amazing. I learned so much from the training and other advocates like Dusty Weaver, C3 Grassroots Coordinator, Jim Wetekam, C3 Policy Director, and Judi Sohn, C3 Operations and Communications Director. I remember being very nervous about actually going to our appointments. Dusty said, “You have a story and you have the passion it takes to get your message across. You go for it. You can do it.”

I told my story but I didn’t understand at that point the importance. I hadn’t had time to digest all that I had learned; all I knew was that I was part of something big and very important. I also was aware of the need to keep up the work at home in terms of visiting our Congressmen on our home turf. I learned one individual can make a difference.

In September I was asked to go back to DC with the ACS to attend Celebration On The Hill, largely because of my training with C3 and OVAC. The experience was once again mind-boggling as I witnessed first hand the power we have as constituents. When I told my story this time I was more comfortable doing so. I realized what I had was enough and that my story was compelling and, most importantly, heartfelt. No longer was I just repeating words I was told to say at the training but what I was saying was a part of me now.

I’m hooked on advocacy and excited to see how far C3 will go with people who simply tell their stories with passion and commitment — being heard and making a difference. I’ll continue to tell my story and it is more than enough!

I remember when I met Rebecca Dague Marec. It was right before last year’s C3 Advocacy Training. I was sitting with Dusty Weaver (C3’s Grassroots Coordinator) and Judi Sohn (C3’s Director of Operations), doing last-minute planning, when in strode Rebecca with her luggage. And though I still had no idea who she was, this young woman from Ohio began to regale us with a breathless story of chasing Senator Mike DeWine down the jetway just an hour before as she had disembarked her flight.

Rebecca died late Thursday night, February 22. She leaves her very caring and loving husband, Alain, and their two small children, Julia and Andrew. And she leaves all of us, who learned a little bit more about life because of her.

I was pleased to be able to write about her in a recent issue of Momentum. As I interviewed her then and remembered back to that first meeting in DC, I kept picturing this dynamic woman who seemed constantly on-the-go. In fact, she related to me how she had run again after Senator DeWine during her town’s Fourth of July parade. And she tracked down Rep. Ralph Regula in a coffee shop town meeting, with such tenacity combined with prudence and graciousness that she was hailed by senior DC lobbyists as having achieved the “quintessential constituent lobby visit.”

Yet, Rebecca was obviously so much more than just this person on-the-go whom I knew. She was extraordinarily thoughtful in what she stood for and believed in and fought for. And even in last Saturday’s sleepless morning hours when I wept while reading the moving email from her husband reporting that she had passed away, it was Rebecca’s reflectiveness that shone through, as well as the love and mindfulness she bestowed upon her family even on the last day. True, Rebecca fought for cancer funding, but she fought that fight for her children and family and friends and for the multitude of people who needed someone to fight with and for them.

I so much wanted Rebecca to walk in that door again at this year’s Call-On Congress and regale me with a story. It aches to think that she won’t. Instead, she has left it to us to continue telling her story and the stories of so many whom we love and have loved.

On March 20 at C3’s Call-On Congress, I won’t be able to be on Capitol Hill without having a tear (likely, many more) in my eye. That much I know. But I also think I will be just a bit better advocate, on behalf of so many affected by cancer. Even after my 24 years in Washington, DC, Rebecca helped teach me how to be better at what I do. But more importantly, she reminded me why I do it. Though I knew her but briefly, I will profoundly miss her.

Low-income Wyoming residents would be eligible for reimbursement under a bill working its way through the state legislature, The Wyoming Cancer Control Act (S 131) would authorize the state to provide a colonoscopy reimbursement to people over the age of 50 who are at or under 250 percent of the poverty level and who haven’t had a colonoscopy within the past ten years.

The Associated Press reported the bill’s sponsor Sen. Charles Scott, R-Casper, as saying:

“A colonoscopy is a well-proven technique for preventing colorectal cancer. If they find a polyp (during the screening process) they take it out to prevent cancer from developing and the prevention rate is well over 90 percent… It is often poorly covered by insurance. And unfortunately the risk of getting a high bill is becoming an obstacle to people getting a colonoscopy.”

As approved by the Senate the act would cost Wyoming approximately $4.3 million of which about $3.9 million was slated for the colonoscopy voucher program. The House Labor Committee, chaired by Rep. Jack Landon Jr., R-Sheridan, amended the bill to limit the contribution for the procedure to $1,500. Then the House Appropriations Committee, chaired by Rep. Frank Philp, R-Shoshoni, reduced the proposal’s colonoscopy funding to only $1.2 million.

Sen. Scott estimated that colonoscopies cost between $1,000 and $4,500, in situations where polyps need to be removed. Rep. Landon said the $1,500 voucher would cover most routine colonoscopies. According to the AP report the funding cut “was based on information the state Health Department obtained from a similar program in Colorado.” It quoted Rep. Philp as saying “It wasn’t like we were just giving it a haircut for the heck of it. We had the numbers from the Health Department to go along with our decision.” Sen. Scott responded by saying the House Appropriations Committee took too much.

Tuesday the Senate defeated the bill as amended by the House which was to be expected given the overwhelming support the Senate gave its original bill. Latter that day the bill was amended on the floor of the House to say that the state would provide reimbursement “at the rate paid under the Wyoming Medical Assistance and Services Act for colonoscopies including polyp removal.” The bill now goes to a conference committee which will try to work out differences between the two versions of the bill.

According to a Casper Star Tribune article, Wyoming Comprehensive Cancer Control program manager Kim Rogers said:

“The average cost of treatment for an early detection of colorectal cancer is $30,000. But at the late stage it runs about $120,000, so we’re looking at a big cost savings for the state if we’re able to detect things earlier.”

It is important to remember that colon and rectal cancer can not only be detected in early, more treatable stages but that it can be prevented with the removal of polyps before they become cancerous thus resulting in even greater cost savings.

An interesting section of S 131 would require the Health Department to obtain colonoscopy provided by a sealed, competitive bid process. Voucher users would be required to go to these providers for colonoscopies.

Also covered is what happens if a cancer is found during a colonoscopy performed under the act. If the person is not covered by Medicaid and is without health insurance the Health Department is “authorized to pay for the treatment needed for that individual.” The patient pays the first $10,000 unless this is waved by the department with the maximum paid by the department of $50,000 for any one case.