Bethesda Spoke

Wednesday, September 15^th 2010

Bethesda Maryland

Up early to ride with Steve to the NIH / NCI campus. We go through security (looks like a bay for a wash it yourself carwash) where we have to leave the bikes with our saddle bags un-zipped and go inside through a security check. The van with the trailer had to go through a separate inspection. They had to pull the vehicle into a separate area and open every door while the bomb sniffing dogs go through everything. Then they got a sticker saying they had been inspected.

There was a bit of a communication mixup between the riders and the support vehicle and they went to a different building. Easily done, as it is like a city of it’s own in there, and the buildings are not numbered sequentially. This put us behind schedule.

We finally made it into where the presentations were, and the presenters were great. We started with Heather Leggins from the department of Advocacy, then Dr. Julie Rowland, who is an incredible speaker, full of energy and really knows her stuff, she is the director of the department of Survivorship.  Then a presentation from Dr. Richard Childs on Kidney cancer research. He explained the research he is doing right now on a kidney cancer vaccine. He described kidney cancer as remnants of a prehistoric virus that is dormant in all of us. It really hit home when we asked how long he predicted the timeline to a cure to be with this research and his answer was that with research funding from Ken Youner’s organization, they were able to hire another FTE, which has cut the timeline in half! They desperately need more FTE’s!!!

Then Federico Bernal presented his research. He showed us breaking news on work at the cellular level working with peptide chains and enzymes that would cure a rare cancer but in doing so would open the door to other cures. It was simple yet brilliant, but required a lot of work to get it to the point where it could go to human clinical trials. But this cure would have little to no side effects! Again, the answer here is funding more FTE’s to carry out the research.

 Many of you may recall meeting Dr. Bernal at the Columbus LiveStrong Summit. We called him “Fed”. He is a CCC’r and is a survivor as well as a cyclist coming to the NCI from the Boston area.  Fed was awesome and has all this energy devoted to curing cancer. It’s really cool to meet the people on the edge of discovery and see their passion. So inspiring to see first hand where and why we need to increase funding on all levels.

The last presenter spoke to us regarding exercise and survivorship.

All issues fascinating, all wonderfully presented, and with a film crew setting up photo shoots, getting 14 cyclists organized, moving everyone through gridlocked traffic in Bethesda toward Rockville at lunch time, and having starving riders… we found ourselves stuck, and unable to make it to our 1:30 appointment at the Bethesda Cancer Support Community.

If you may recall earlier in the week, my phone was dropped in the street while it was raining in Pittsburgh.  All my contact phone numbers were in there, and when you are out on the road, you don’t necessarily have access to the world when your phone is not working. I tried using my phone as it would power up and then immediately off. I wanted to throw it across the room!  I felt incredibly frustrated that I could not get through to let them know we were trapped and could not get there. When finally I got to a computer and could look up previous e-mails I was directed to the correct number. I called to apologize for our missing the visit that we were so looking forward to only to be met with very sharp bitter words that felt like a punch in the gut. It may sound simple… getting 14 people on bikes and a van + trailer + film crew from one place to another on time… but in reality it is much harder than it may sound. Especially when your phone doesn’t work.

We returned to Steve Friedman’s house and decided to ride down the crescent trail bike path to the heart of DC to do some sightseeing. Steve accompanied us and loaned Gary (our documentary film camera operator) a single speed bike that was a bit too big for him and a helmet. We took a backpack cooler and emptied it and put his expensive movie camera in it. At first he tried to put the backpack on and I did not think this was a very good idea… unfamiliar with the bike that was too big for him and then making him top heavy to boot. So I took it. It just made sense to me.

I really needed the ride to try to release the tension of the day and the phone call.

The Crescent trail was gorgeous! Smooth and tree lined with tunnels and bridges. The people who utilized the trails knew what they were doing and knew the etiquette. It all worked well. The grade was a steady 1-2% going downhill from Chevy Chase to DC.

The sheltered trail led to a road beneath an elevated freeway. Riding through the shadows of the buildings and the roadway over our heads and then emerging to the bright blue sky with the sun dancing off the water of the Potomac River to our right.  Pristine white monuments and sand volleyball courts to our left. A rowing competition on the water, joggers all around and people in cars trying to escape the city… we had arrived! It was all beautiful, but the most beautiful sight to see was the people in the yellow and black Spokes of Hope jerseys in this environment, together, united in the journey. We had come a long way to get there. We had fought traffic and cancer to get there. And we were happy.

We visited the Lincoln memorial first, and gazed across the reflecting pond to the Washington Monument. Went to the Korean War memorial and then on to the FDR memorial. It was here that Patti, Sharon, Laura and Kathy found a quote on the wall that they felt I should see and it overwhelmed me.  I was overcome with the generous spirit of those around me, what they had sacrificed to be there, supporting me in my crazy idea, believing in what we were doing, and just living vertically.

These people were genuine heroes in my eyes. They had given up a whole week to make this dream come true. It was not all easy, but it was necessary. We are still working out details and will make next year even better. And we still had one big day ahead of us.

We journeyed on with our bike caravan, weaving through monuments and marveling at the fact that we were really there. We finally made our way to the white House. Gary had a brief panic attack when he put his video cam down to take some still shots, did not see Ken pick it up and when he turned it was gone.  His face was as white as the building behind him, then when Ken turn around to show it was on his back his face flushed red as he laughed and staggered in relief. Time was again moving more quickly than we wanted, and we turned back to make it to Steve’s house for a bar-b-que. While we were gone, my friend Pat Fee and Harrison went shopping for a few items. In addition to delicious chicken and veggie burgers and Hamburgers, we had chocolate fondu! Harrison (documentary crew) prepared an adult chocolate fondu as well as a kids fondu. They also picked up some beer for Kathy that was brewed by the “Flying Dog” brewery called “Raging Bitch”. Steve’s Wife Michelle later commented that she thought it would be many years before she heard her 8 year old son utter the words “raging bitch”… he evidently found it quite funny to read the label of Kathy’s bottle aloud to his Mother.

Again we were gathered around a table of camaraderie. Branan was the field commander of tomorrows planned attack and had all the schedules and maps on the tables. Sharon, Ken and Branan reviewed and plotted. We had 9 offices that we had appointments with in 4 different buildings. We went to bed early in the knowledge that we had a lot of work ahead of us tomorrow.