For the past several months the true meaning of “strong” has uncovered itself at Fight Colorectal Cancer.  As we’ve toured the country and met many who make up One Million Strong, we’ve seen new shades to the meaning of this word.Some we’ve met are physically strong – their training and determination cannot be beat.Others are mentally strong – clinical researchers work tirelessly to find cures and end disease. Our men and women in Congress fight for better health funding and policy.

But there’s another group – the survivors – who’ve redefined “strong” as we know it. A cancer survivor’s hope and the love of a supportive spouse offers a new definition of strength.

An Evening with Sheryl Crow was magical and the love and support from the community was palatable. Food vendors, local bands and fun cancer awareness gear (like an inflatable colon) flooded the patio a few hours before guests entered the Drury auditorium to hear Sheryl play her best hits.

At one point during the concert, the lights dimmed in a sold-out arena and Sheryl began to softly strum one of her most familiar tunes. At the chorus, she instructed the entire auditorium to shout “DREW” after she sang, “Are You Strong Enough to Be My Man?”

The audience chimed in. It was a perfect way to show that Drew was the epitome of strength and honor a man fighting a tough battle with colorectal cancer –  a man who’s openness about his journey was impacting thousands by the day.

Drew – Kicking Colon Cancer’s Ass

When January 2012 hit, Drew was determined that it would be a good year. As a real estate agent, the growing housing market had him hopeful about the year ahead. But just weeks into 2012, Drew received an unexpected curve ball.

He’d visited a doctor upon the insistence of a friend who told him that his change in stool needed prompt medical attention. A colonoscopy soon revealed a mass and further tests confirmed:  Drew had stage IV colon cancer.

Upon hearing this shocking news, Drew made a bold choice. Not only was he going to fight colon cancer and beat it – but he was going to share his story with the world. He started a Facebook page - Drew Lewis – Kicking Colon Cancer’s Ass - where he gave open, detailed updates about his situation.

Readers kept up with Drew & Amy through colon surgery, chemo and clinical trials. They celebrated with the couple when they made the “leap” and married on Leap Day in February 2012.

In between the posts about cancer and chemo were shots of Drew on the lake and he and Amy enjoying dinner with friends – all ways Drew showed the world that cancer does NOT have to define you.

Readers journeyed with Drew & Amy as they traveled to the Cleveland Clinic and Nashville for treatments. They also felt the blow as the news turned grave and Amy posted updates about Drew’s liver failure and calling hospice.

Despite the “good, bad and the ugly” as Drew called it, the couple risked vulnerability and openly shared their emotional reactions to the frustrating news they were receiving.

Drawing Strength Even in the End

A little over a month after Sheryl’s benefit concert, Drew’s strength weaned. He hung on for three weeks as friends and family stood by his side to give warm goodbyes.

On May 18, 2013 Drew took his last breath.

But the outpouring of support from a community that fell in love with Drew & Amy has carried on.

A new Facebook page, Memories of Drew Lewis, was set up so loved ones could remember him. Comments and “likes” flooded each post on Drew’s Facebook page. The local media even reported on his passing.

Thousands from around the U.S., and even some abroad, have responded to support Amy and Drew’s family. Many gave thanks for the inspiration that came from Drew & Amy’s open 16-month battle with the disease.

Drew – Redefining Strong

While he may not have beat the disease physically, Drew showed us how to defy cancer in all other ways. As Amy puts it, Drew “wouldn’t let cancer define who he was.”

He made the choice to “go public” and let others know about his battle. He accepted help, generosity and support from those most dear – and those unfamiliar to him. In between the appointments, he was on his boat, at concerts and with his family.

He let his story serve as an inspiration and encouraged others to enjoy the simple things in life.

Drew Lewis was strong enough. He kicked colon cancer’s ass.

May his legacy ripple throughout every community and be a shining example of what it means to be strong.

Our team at Fight Colorectal Cancer’s condolences go out to Amy and the friends,
family and loved ones of Drew.

It was an honor to meet you.

Take the Million Strong Pledge

Together we are Strong

At Fight Colorectal Cancer, we head straight to “the top” when it comes to demanding a cure for this dreaded disease. Our advocates hit Capitol Hill each March to meet with members of Congress. And throughout the year, a special committee ensures that actions for CRC advocacy are taken.

Meet the newest members of the Grassroots Action Committee of Fight CRC – the team behind the magic that happens year after year at our annual advocacy event, Call-on Congress.

What is the GAC?

The Grassroots Action Committee was formed to coalesce the passions of die-hard colorectal cancer advocates. We consider the GAC our “super committee!” They are committed, engaged advocates who take action when asked and provide advice for engaging and empowering the grassroots advocates.

·         Participating in meetings to communicate priorities and provide input on federal and state legislation

·         Contributing to the development of the advocacy and outreach programs

·         Mentoring advocates at Call-on Congress

·         Guiding the agenda for Call-on Congress

 

Meet Belle, Michell and Patti!

This year, the GAC is adding three wonderful women to the squad.

Belle

Belle Piazza is a stage III rectal cancer survivor diagnosed in October 2007 (27 of 38 lymph nodes were positive.) Belle just happens to be Miss February 2012 of The Colondar. She underwent surgery, chemotherapy and radiation. In 2011, she had a recurrence in her lungs and lymph nodes and is now on “chemo for life.” As a patient who fights for answers, Belle met up with Fight Colorectal Cancer for the first time in 2012. After her late friend, Pat Steer’s, encouragement to attend Call-on Congress, she traveled to Washington DC from the Portland area with her family. She enjoyed Call-on Congress and jumped at the opportunity to get involved on the planning level. As an organizer and planner, Belle looks forward to serving as a resource for anyone who is new to Fight Colorectal Cancer and showing others how to get involved in the fight – either in DC and/or at home.

Michell

Michelle, left, with her two sisters.

Michell Baker is a 5-year veteran of the Call-on Congress. She and her two sisters looked for a way to get involved after their dad, Steve, passed away from colorectal cancer in 2008 at age 56. Struck that colorectal cancer is a preventable disease, the Baker sisters, from Oregon, have met with their representatives every March since 2009 and pushed for funding, research and colorectal cancer policy. This year, Michell is excited to get involved even more through the GAC. As the Executive Director of the Steve Baker Colorectal Cancer Alliance, she is excited to help plan the 2014 Call-on Congress and lead more advocates to become part of Fight CRC’s One Million Strong through local and national participation.

Patti

Patti lost her husband Harry to stage IV colorectal cancer just two days after Christmas in 2006. Starting in 2008, she attended the Call-on Congress and has made it her personal mission to carry on her husband’s memory and give meaning to his life and battle with colorectal cancer. She first got involved with Fight Colorectal Cancer after receiving helpful information and support from the ACOR List Serve and has since formed many close bonds within the group. A trained nurse from Pennsylvania, she changed her focus from critical care to oncology nursing in 2010 and now spends her time helping patients as an Oncology Nurse Navigator. Her mission is to spread awareness about CRC screening and support research whenever and wherever possible. In her own words, she “will not rest until CRC is as extinct as polio.”

The 2013-2014 GAC

Belle, Michell and Patti join a great group of committee members who’ve been leading the charge when it comes to colorectal cancer advocacy. The other GAC members include:

·         Rose and Eric Hausmann (committee chairs)

·         Josh Wimberly

·         Pam Seijo

·         Tom Fueller

·         Jennifer Bretsch

·        Elaine Newcomb

Are YOU interested in joining GAC?

Each GAC member is selected through a nomination process and serves a one-year term (that may be renewed or extended.) If you’d like to know more about how to Fight with Us, please contact us!

Last week, National Siblings Day took the Facebook feeds by storm! And in the spirit of celebrating sibling love, I wanted you to meet two sisters who came to the 2013 Call-on Congress. They are precious women who used the advocacy event to honor and remember their mom.

Here is their story.

Sisters Michelle (left) and Casey (right).

Maybe I came too soon…

You might remember the woman I referenced in the Monday recap from the Call-on Congress. As I floated around the room I met one woman whose tears prevented her from sharing her story.

A day or so later, I sat down with her and her sister to learn about what brought them to the Call-on Congress.

Michelle and Casey lost their mother to colorectal cancer in February. They noticed information about the 2013 Call-on Congress and thought advocacy would be a good way to make a difference and prevent others from suffering.

Initially, as first-timers to the event, they wondered if they’d come to advocate too soon…. just a little over a month after their mother’s passing.

But as they learned about the impact research and funding can have on fighting disease, their loss fueled them to share their stories on The Hill and carry their mother’s strength into congressional offices.

Mom was so strong…

The family at a GYRIG race last year, Mom wore the “S”, Dad wore the “T” and each sibling wore the other letters.

The girls showed tremendous strength as they told Congressmen and other advocates about their mom.

Strength they attribute directly to her.

As the winners of our Week #1 March Facebook photo contest, they shared a photo depicting the importance of being STRONG in their family.

At a Get Your Rear in Gear event in Fort Myers, Florida the family created Team STRONG.

The girls’ mom and dad, as well as each sibling, wore one letter making up the word “Strong.” Their mom wore the “S”, Dad wore the “R” and then the rest of the siblings wore the other letters. (With a cousin filling in for their brother.)

“We aren’t strong without one another,” Casey explained. “It takes all of us to have strength.”

Each family member was assigned a letter to carry with them as their mom faced the disease.

At the Call-on Congress, the sisters each pulled out necklaces with their letter, explaining that they wear them everyday, keeping their mom’s strength with them everywhere they go.

Carrying on mom’s legacy

As a survivor, I often feel a heavy burden to “give back” and “do something” since I am fortunate to still be here. But not until I met these women did I realize that family members who’ve lost a loved one carry these burdens, too.

I am so thankful that these daughters (and actually, moms themselves) found the Call-on Congress and decided to come, although their grief is still fresh and they have young kids at home. I’m thankful that families touched by colorectal cancer have a way to DO something about it – and demand a change.

That’s precisely what these sisters did at the Call-on Congress.  And that’s exactly what our team will continue to do.

Carlea Bauman, President of Fight Colorectal Cancer

I am deeply disappointed that President Obama’s fiscal year (FY) 2014 budget would strip nearly $4 million from the Centers for Disease Control and Prevention’s (CDC) Colorectal Cancer Control Program. The CDC estimates that the loss of funding will mean at least five fewer programs (out of the current 29) working to prevent colorectal cancer.

The president’s budget assumes that less federal funding is needed for direct screenings, such as colorectal, breast, and cervical screenings, because most health plans are required to cover these screenings without co-pays or deductibles, and because, starting in 2014, the Affordable Care Act ensures that no one can be denied health insurance because of a pre-existing condition.

However, a number of barriers contribute to low colorectal cancer screening rates, such as lack of awareness and misinformation about screening – not just lack of health coverage. A well-funded colorectal cancer control program is needed to support important awareness and education initiatives across the country.

The hopeful news is that Congress does not have to accept the President’s budget. I urge colorectal cancer patients, survivors, caregivers, and physicians to let their members of Congress know that a cut to the colorectal cancer control programs at the CDC is unacceptable.

On a positive note, the President’s budget would increase research funding to the National Institutes of Health (NIH) by $471 million (a 1.5 percent increase) over FY 2012 amounts. The NIH estimates this will result in 351 more research project grants in FY 2014.

I recognize that the President and Congress are budgeting in a difficult economic environment, but our country needs dynamic thinking from our policymakers when it comes to budget decisions. Preventing colorectal cancer and targeted treatment reduce downstream costs to our health care system and to our federal government. That makes good budget sense to me.

This year’s Call-on Congress introduced something new:  a scholarship fund.

One survivor honoring her mother opened the door for 3 fellow colorectal cancer survivors to join our advocacy efforts.

And what a great door they opened. Here are their stories and how they set a precedent for future Call-on Congress events.

Giving through Grief

We had the opportunity of meeting Joyce Anne Ware Longfellow, mother of colorectal cancer survivor Liz Dennis, at the 2012 Call-on Congress. Liz attended many previous Call-on Congress events and brought her mother last year. Both walked away determined to bring more people in 2013.

Unfortunately, Joyce passed away in September 2012.

As Liz grieved the loss of her beloved mother (and caretaker), she decided to honor her through a special way since it was also her mother’s goal to have more people at the Call-on Congress.

She created a scholarship fund. Her fund enabled 3 grassroots advocates to join us on The Hill for the 2013 Call-on Congress.

Liz specifically wanted the scholarships to go to first-time attendees who’d never experienced the Call-on Congress.

And we have to say – this year’s scholarship opened the doors for 3 fantastic women to join us.

Scholarship Recipients for Call-on Congress

Sheila, Liz, Candace and Vanessa

Three colorectal cancer survivors came to the Call-on Congress with Liz’s scholarships. Three strong women carried their jaw-dropping stories into congressional offices to advocate for colorectal cancer awareness and medical research funding.

Vanessa

A stage IV survivor from Bronx, NY, Vanessa wanted to come to Call-on Congress to “abolish the outdated and incorrect idea that colon cancer is an older man’s disease.” She explained that her entire life is dedicated to giving back. She’s participated in many activities that involve supporting other survivors but wanted to get involved in advocacy. Fight Colorectal Cancer’s Call-on Congress was the perfect event for her to jump in and a scholarship made that possible.

Candace

Candace, from Chicago, IL, was diagnosed with stage IIB colon cancer in 2003. She told us, “I am attending on behalf of myself, other survivors and those to be diagnosed after me. I hope to accomplish raising an increased awareness about the need to make colon cancer awareness and screenings a priority.” Candace hopes to help make March all about BLUE, just like October is much about PINK. Having the 2013 Call-on Congress fall within Candace’s 10th year of survivorship made the event even more special.

Sheila

A IIIC colon cancer survivor from Ohio, Sheila came to Call-on Congress to “tell my story that it is not only an old man’s disease as I was 38 at time of diagnosis.” Not knowing much about the event, she saw the opportunity for a scholarship on Facebook and signed up. She and her husband traveled to DC to advocate on The Hill and share their powerful story. Wheels started turning during the Call-on Congress and they’re looking into how more family members can come next year to continue the advocacy efforts.

Scholarships Open Doors – Will You Help?

The scholarships allowed 3 amazing survivors to participate in our Call-on Congress. Each used their opportunity to share about colorectal cancer and make a difference on The Hill.

They were a voice for those who could not join us. And their voices were heard.

The scholarship fund created by Liz changed the Call-on Congress this year. It introduced a program that allowed advocates to attend; advocates who needed a scholarship to come.

And we’re looking to do the same for next year.

Liz has offered to match dollar-for-dollar any funds donated toward 2014 Call-on Congress scholarships.

If you’d like to support the Call-on Congress scholarship fund, please follow this link to donate.

Let’s get behind a cure together.