On the Road Again: Chicago and Beyond

For many, the song On the Road Again, by Willie Nelson may be cliché. For me, it’s real. I just can’t wait to get on the road again.

This story is about five recent days that took me to Chicago, IL, (twice), Des Moines, IA, and a thousand miles in between.

As a volunteer for the Cholangiocarcinoma Foundation (CCF) I’ve had the opportunity to participate in a variety of activities that bring patients, caregivers, medical professionals, and industry partners together for the betterment of those impacted by cholangiocarcinoma (cca). These engagements always leave me wanting to make additional connections, raise awareness, share hope, and encourage others to get involved.

One big event of which CCF is involved annually is the Chicago Marathon.  This year’s marathon had 45,000 entrants, including more than 20 Team CCF runners raising funds for research. The team’s runners came from as far away as Northwest Montana, and Nova Scotia, Canada. Hearing the “WHY” behind each of the runner’s stories, as to their purpose for competing in this 26.2-mile challenge, was very impactful.


Over several hours on race day approximately 30 CCF team supporters gathered along Adams Street at Mile 15’s Charity Row to cheer on the runners.  It was very inspiring to be on Charity Row with an estimated 60 different charitable organizations cheering on each other’s team members.

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Note, while checking out the Charity Row location the day before, I realized I was standing on historic U.S. Route 66. 90 years ago, Route 66 was known by many across the country to symbolize the “road to opportunity”. It wasn’t lost on me that supporting CCF team runners who had raised $60,000 for research while standing on the marathon’s Charity Row, it still is!

Hours later, after all the CCF team’s runners had made their way past the Cheer Squad, things started to wind down. Several of us then packed up the tent and the rest of the supplies and headed away. It goes without saying that events such as this take significant amounts of planning and logistics. A big Thank You goes to CCF’s Meredith McGuffage, and volunteer Katie Glenn, for coordinating this successful event. BTW: I understand Katie still hadn’t regained her normal voice as of several days later!


After the race was over, I had two days to fill before needing to be back in Chicago for the upcoming Cholangiocarcinoma Symposium at the University of Chicago Medicine. The question then was: So, what was I going to do? Answer: Pack up the CCF materials I had and head west for a brief road trip. After making it across IL., IA., into SD., and NE., I then headed back east to Des Moines, IA., to make a stop at the John Stoddard Cancer Center. There, I delivered Community Provider kits designed to get into the hands of a variety of doctors and nurse practitioners who have recently seen newly diagnosed patients with CCA. The free kits include resource materials that provide practical information that patients and providers can benefit from using.

Presenting Kits in Des Moines

While in the Center, I met a couple that was curious/interested in what I was up to. We had a nice conversation that made me feel good about what I was doing. I must say, though, they were somewhat surprised to hear that I live in Maryland, and that I had come from the Chicago Marathon the day before, via Nebraska, and was heading back to Chicago the next day!

Back in Chicago….

You probably all know what’s behind Chicago’s nickname, “The Windy City”. However, that may not be the case for the “City of Broad Shoulders”, another nickname the city has. It goes back to a 1914 Carl Sandburg poem, “Chicago.” The actual line in the poem refers to the city as “City of the Big Shoulders,” which later became “City of Broad Shoulders.” The nickname celebrates the hard-working nature of Chicago and its history as an industrial hub. Over 100 years later, I see a connection to three words on the home page of the University of Chicago Medicine’s website: Tougher. Stronger. Smarter.

That connection became apparent to me while attending the Fourth Annual Cholangiocarcinoma Symposium hosted by CCF and the UChicago Medicine. The event contained updates, insights, and advances concerning CCA from UChicago Medicine staff, as well as several patient stories from hosts Melinda Bachini (CCF) and Lisa Craine, and a special presentation from Chaundra Bishop.

Chaundra Bishop presenting

In addition to the presentations, many of the attendees were grateful for the opportunity to make personal connections with other patients and caregivers. It is hoped that a number of these newly formed connections will lead to additional gatherings, bringing together patients, caregivers, as well as medical professionals and industry partners alike. Hopefully, this can be the beginning of regionalized Cholangiocarcinoma Awareness Research and Education (CARE Teams) across the U.S. and beyond.

Thank you to all involved, and more to follow!

Final Note: Willie Nelson’s song also includes the line Goin’ places that I’ve never been, Seein’ things that I may never see again. Well, I have to say I was surprised to see the World’s Largest Popcorn Ball while passing through Sac City, IA. At over 9,000 lbs., you have to wonder.

World's Largest Popcorn Ball