Last week a co-worker brought a bag of chips to lunch. I noticed a different color on the package and when I looked I saw the color was pink. The package said the company would donate 25 cents to a national breast cancer organization for each proof of purchase returned to the chip manufacturer.

October being Breast Cancer Awareness Month this is not the only pink thing I’ve seen. A cell phone company is selling pink phones. A candy company made a pink version of its popular candy-coated chocolates. There are cans of soup with pink and white labels instead of their normal red and white ones.

Realize it was not always this way. My mother was diagnosed with breast cancer in 1980. Back then there was no special month for breast cancer; no things for the cure; no companies with special merchandise. Pink was just a color and breast cancer, along with cancer in general, just wasn’t talked about.

At the Connect the Dots training C3 held last May just before the One Voice Against Cancer Lobby Day, Jane Reese-Colburne, one of the founders of the National Breast Cancer Coalition, told us about the early days. Back then NBCC consisted of a few women sitting around a dining room table. More than likely this is the same with other high-profile breast cancer groups.

Those affected by breast cancer realized they could do much more collectively than individually so people started to band together to have greater impact. Groups which look so large and successful started small and did what they could with what they had. The highly visible organizations and movements of today were once little more than an idea in someone’s head.

It is easy to feel jealous and even angry when it seems everyone talks about breast cancer yet seem so silent about colon and rectal cancer. It is discouraging when most people know what a pink ribbon means while you have to explain your Blue Star pin every time you wear it. As you deal with these thoughts and feelings remember that our enemy is not pink ribbons but cancer.

Rome was not built in a day. This means those of us associated with C3, along with the colorectal cancer community in general, need to remember it takes time to build a strong and healthy movement able to go the distance.

To get there we need the infrastructure in place to support activities in the field. We need a base of people willing to do what it takes to get the awareness we want, whether that be of the need to be screened or for public policy decisions favorable to our agenda. We need to set goals, plan our work, and work our plan. We need to celebrate our successes and learn from our failures.

Awareness without action has no impact. By focusing on action we get the most bang for the buck and will have the awareness of colon and rectal cancer we so desire. People will see our deeds and the sea of Blue Stars will follow soon enough.

Whatever changes are in store for a new 110th Congress convening in January 2007, we know that first the old 109th Congress will re-convene to finish some of its business.

One month from today, on November 13, Congress will reconvene in a “lame duck session.” The shape of the lame duck Congress will be exactly the same as it is today; the session will include those who are retiring and those who lost their election on November 7. And therein lies the origin of the term: “Lame ducks” are elected officials serving after the time when someone else has been selected to take their place and before the new person is actually sworn into office.

Lame duck sessions, therefore, are totally unpredictable. Some wreak great havoc; some are productive; some just go away with a whimper. This one may be long and contentious, or it may be short and sweet.

In any case, the Labor-HHS-Education Appropriation bill, which contains nearly all funding for cancer research and prevention programs, was not decided by the time the 109th Congress recessed on September 29 for the elections. So, one of two things will now likely happen to this bill:

1. It (and presumably the other eight unresolved appropriation bills for fiscal year 2007) will be finally determined during the lame duck session, or
2. Congress will be unable to make final decisions on the bill, in which case Congress will:

   a. Pass a longer-term “continuing resolution” which will continue to fund these federal government operations (including NIH, NCI, CDC, etc.) until a time in early 2007, and

   b. The new Congress would be given the task of resolving the final spending bills during the first months of the new year.

We must operate under the assumption that the Labor-HHS bill may be resolved during the lame duck session. Contacts with elected officials during this time in October before the elections are extremely useful to your and our efforts to fund colorectal cancer research, treatment, and prevention (see Dusty Weaver’s post “To Make Cancer an Issue You Have to Ask the Question,” Sept. 30).

But back to what has happened…. During the final weeks of September and the beginning of October, two good developments occurred.

Letters from important Members of each chamber were/are being sent to their respective House or Senate leaders, reiterating the commitment to have the full $7 billion added to the Labor-HHS bill (above what had been requested by the President). From where the bills stood in their incomplete forms on September 29, the Senate bill is currently $2 billion short of this goal and the House is approximately $3 billion short.

As we’ve said before, since cancer programs are funded by the Labor-HHS bill, it is only if Congress grants this full $7 billion increase that programs benefiting colorectal cancer patients – programs for cancer research, treatment and prevention – can be protected. Otherwise, federal cancer programs are likely to receive cuts, or at best, some would receive “flat funding” without an inflation adjustment.

In the House, Rep. Michael Castle (R-DE) organized a letter of just his Republican colleagues, reiterating their commitment to the $7 billion increase in the Labor-HHS bill. The importance of the signatures he gathered is that the House Republican leadership knows that it will most likely need these 24 Members of Congress to pass any Labor-HHS Appropriation bill during a lame duck session.

If you are in the congressional district of one of these letter signers, please thank them for their support and ask that they continue to ensure that Congress provide the full $7 billion to the Labor-HHS-Education Appropriation bill. The signers are:

• Christopher Shays (CT)
• Nancy Johnson (CT)
• Rob Simmons (CT)
• Michael Castle (DE)
• Curt Weldon (FL)
• Judy Biggert (IL)
• Timothy Johnson (IL)
• Jim Leach (IA)
• Wayne Gilchrest (MD)
• Fred Upton (MI)
• Joe Schwarz (MI)
• Jim Ramstad (MN)
• Jon Porter (NV)
• Frank LoBiondo (NJ)
• Sherwood Boehlert (NY)
• John McHugh (NY)
• Sue Kelly (NY)
• Randy Kuhl (NY)
• Steven LaTourette (OH)
• Charlie Dent (PA)
• Jim Gerlach (PA)
• Michael Fitzpatrick (PA)
• Todd Platts (PA)
• Dave Reichert (WA)

In the Senate, Senators Specter (R-PA) and Harkin (D-IA) originated a bi-partisan letter that demonstrates to Senate leadership that more than a majority of the Senate wants the full $7 billion increase in the Labor-HHS bill. (Due to some unexpected changes in leadership decision-making, Senators Specter and Harkin have decided that they must deliver the letter to leadership today rather than after the election, as was originally reported.)

C3 did a great deal of work to garner signatures on the letter, sending targeted action alerts to all states in which we were trying to add signatures. And we know now that over 225 persons responded with email and phone contacts to their Senators’ offices! As of yesterday, 56 Senators in total had signed the letter. This means that 27 new Senators signed the letter since the first action alert was sent out! Thanks and congratulations to all of you for your hard work on the Specter-Harkin letter. This successful effort demonstrates to the Senate leadership that colon and rectal cancer advocates will stand up and be counted, insisting that cancer programs be adequately funded by Congress!

An updated list of signers of the Specter-Harkin letter can be found here. Thank those who signed the letter for their support.

Don’t forget – during October, make sure that all candidates for office know that you want their commitment to providing necessary increases in cancer research, treatment, and prevention funding!

And as always, stay tuned in this space for updates of what’s happening.

“You name it! I have done it through my state and the country.” So said Dr. Margaree Seawright Crosby in an article published in The Community Informer (August 9, 2006).

I first met Margaree this year in March. She participated in the Connecting the Dots advocacy training C3 held the morning before the One Voice Against Cancer (OVAC) Lobby Day.

She seemed quiet and soft-spoken but I soon learned she is far from inactive. This 19-year breast cancer survivor said, “I have dedicated my life to advocacy programs and trying to help women become more educated to prevent breast cancer and save lives. I have attended workshops, training programs, peer review research programs and served on committees around the United States.”

Margaree said the CTD and OVAC experience was “most wonderful.”  She started out a little ahead of others as two assistants of Rep. Bob Inglis (R – 4th, SC), Jason Morris and Ryan Hamilton, knew her from years ago.

In the article Margaree said she is now “a strong advocate for colon cancer and breast cancer.” This showed in that the article ended with a lengthy discussion of colon and rectal cancer which included screening information.

Recently, Margaree was one of 20 advocates selected to participate in the Survivor Researcher Mentoring Program. It will be interesting to see what else she does to increase awareness of colon and rectal cancer.

While doing some research on the Senate’s website I had occasion to go to the site of Senator Lisa Murkowski (R-Alaska). One of the menu items was an archive of her newsletters so went to see what was there. I opened the one dated September 22, 2006 more out of curiosity than anything else and I’m glad I did.

The lead article was titled “Murkowski Meets with Alaskans at American Caner [sic] Society Rally.” I know cancer was misspelled but that is not the point.

Celebration on the Hill (COTH) had such impact on Sen. Murkowski she mentioned it in her newsletter. The number of people present on the door step of the Capitol would get the attention of anyone. It was not just the number but the informed passion which was present.

The article even mentioned the Ceremony of Hope. The reflecting pool on the west side of the Capitol was surrounded by luminaries, sometimes three deep. Each one was either in honor of or in memory of someone affected by cancer. It helped put a face on cancer.

The article also included a photo of the Senator with COTH participants and a link to the American Cancer Society website.

I’ve not checked the sites of the other 534 Members of Congress but my guess is that COTH’s effect was not limited to Sen. Murkowski.

We have the attention of Congress. Those of us affected by colon and rectal cancer need to join with others in the general cancer community to do everything possible to keep this attention and to do something useful while we have it.

Click here to read Sen. Murkowski’s September 22, 2006 newsletter.

Editor’s note: Suzanne Lindley is an eight-year survivor of stage IV colon cancer. She has received a variety of therapies and is still undergoing treatment. Along the way Suzanne found ways to support herself by supporting others. She is an active participant in a colon and rectal cancer email list and was the coordinator of a cancer buddy program. She continues to provide local support for those whose lives have been touched by colorectal cancer, facilitates a support group for survivors and caregivers, and is working towards her master’s in social work. Her recent activities include speaking at conferences and meeting with her elected officials to make cancer a public priority.

Suzanne wrote this article in commemoration of her eighth year of survivorship, and she has given C3 permission to reprint here. I’m sure you will agree that she is a fine example of an ordinary person doing extraordinary things. – Dusty Weaver

I wrote last year about my anniversary with “The Seven Year Itch”. I can’t believe that yet another 12 months has passed since then and that I’m alive to capture it. I said last year that moving forward meant moving in a direction that wasn’t always expected. I’ve traveled in many unexpected directions since my experience with the “seven year itch” and can say that all of them have led to the title of this journal entry – “Eight Is Particularly Great”.

I still have two legs to stand on and celebrate that every day, tumors that should be growing seem to be stagnant, and ones that are growing are not yet bringing forth the physical ramifications that have been promised. All the chemo, the gamma knife, the radiation, and the sir-spheres, most especially, are miracles that have brought me to where I am now and as much as I loathe this disease without it my life would have surely been different. I like to think that the muchness was always there and that I felt every moment with the enthusiasm that I have now, but it would have been without the wisdom of finality. I doubt that I would have met many of you, I may not have savored every inch of life that my family explored, and I certainly wouldn’t be lending my voice and experiences to anyone. This year has given me many opportunities to share, to facilitate, and to reflect.

I appeared on the Today Show for colon cancer support with two very dear and amazing friends, I’ve spoken in front of dozens of audiences (both physicians and survivors), I’ve added my voice to those that speak out for cancer issues and have met with my Senators and Congressman – thanks to Dusty and Jim at C3 – hopefully convincing them of the importance of our war on cancer, I’ve been able to rally for continued Medicare coverage for brachytherapy (without it – I would not be here), And I’ve been allowed the privilege of shaking the Vice Presiden’ts hand. These accomplishments seem small compared to the real life living of every day. I’ve cried through the many battles this war has won during the past year and often find the tears streaming as I think of those friends that are now keeping watch from above. I’ve felt the triumph of other friends as they have kicked this disease and are now NED (No Evidence of Disease) and encouraging and inspiring the rest of us to continue on. In the midst of the two, loss and triumph, there lies balance. For those of us who find ourselves in this strange place it is important to see the great promise that lies ahead. Around the next corner there are more options, better treatments, and in the not too distant future a cure.

As I cut apron strings, watched my daughters mature and grow, celebrated another year with my unbelievable husband, and moved forward with my own diagnosis I’ve had time for a lot of self-discovery. I’ve found weaknesses that I once thought were strengths and have stepped over them, things that I once thought were important seem trivial and I’ve grown from that discovery, and I have even learned that peace can be felt in the midst of fear; all knowledge that has given me strength. I’ve become very comfortable with my disease in this past year and as much as I would like to hear and experience the letters NED in my future, I honestly can’t imagine the magnitude of life without cancer. Life as it is now seems about as wonderful and full as it could possibly be.

I think that the same words I used a year ago still hold true: Living involves finding miracles in circumstances that are less than miraculous, uncovering meaning in the meaningless, looking for sense in the senseless, and most importantly believing that there is hope in the hopeless. We each have the ability to make these manifest…..our perception holds the key.

Here’s to bright perceptions and dreams coming true!! Love, Suzanne