Thursday, September 16th 2010 DC Spoke

Thursday, September 16^th 2010

Washington DC Spoke

Game plan ready! We rode the bike trail into DC and Ken drove the camera crew in.

The bikes arrived ahead of schedule and we paused for a few moments to take in the Washington Monument. Everyone collected in front of the Hart building where many of the Senate offices are housed. The thought was that Ken would drop off shoes and camera crew and equipment, then find a parking place nearby. Sounds easy enough.  We locked all the bikes together while Ken searched for parking. On the map it looks quite simple. But the map does not account for all the secured parking around the offices and the capitol. Even though parking was there… Ken could not get to it.

Then there was the issue of the banners. Getting through security with banners was a momentary challenge. We were told that banners were not permitted inside, as many protesters have brought items in and some of them outrageous… and displayed them in the hallways and lobby areas. They told us stories of the “Tea Party” protests and the t-shirts they wore.

They could see that we were reasonable adults… even though we were wearing lycra. We explained the banners to them, that we were carrying dedications in honor of and in memory of those lives affected by cancer. We got permission, but we were given the “Momma” speech (at least that was what we were told it was called). “You can bring those in if you promise that you will not bring them out outside of any offices…that you will keep them to yourselves and not display them outside of the privacy of the offices. If I catch you pulling them out in public, you will be out of here!”

We were happy to comply.

The march was on! Some of our number did not exchange their shoes when the car was nearby. Laura and Jay were clip clomping down the granite hallways in their cleats. Looking at the schedule, we were going to be walking a long way between buildings. (later I suggested to Jay that we look for US Capitol “Flip flops”… and the first thing we spotted in the gift shop… US Senate Flip Flops!)

Walking through the Capitol, wearing bright yellow and black lyra cycling clothing, with large letters on the back reading “Conquer Cancer” brought a lot of eyes in our directions. They also brought quite a few smiles. It is an amazing culture. We were walking upstream in a river of black suits and grim faces. Many who had trained their eyes to only look forward and not to connect with other humans no matter what. I felt sorry for them. We on the other hand were quite happy to be there. Happy to be alive and happy to be together trying to make a difference. We were Cyclists Combating Cancer, and we were here on a mission.

In the past participants asked if they should bring a suit and tie to speak to our lawmakers. My response was, “This is my business suit!”. It has been highly successful in opening minds to speak to us. In fact, at one point after lunch Pat Fee (who lives in DC) joined us on the Hill, and he was dressed in a very nice suit. In one of the offices, it was apparent that those not dressed in cycling gear were considered invisible! Everyone in lycra was greeted and hands were shaken, and those not in cycling gear were passed over as if they were not there! Amazing!

In speaking with our legislators I was so very proud and impressed with our Team! We decided that those who lived in the State the lawmaker represented would interact on whatever level they felt most comfortable.  I was there to support them. I was amazed at just how confident and assured they were in presenting the mission and the requests. And even though Ken Youner was not there… he was! Seeing the need for more FTE’s first hand at NCI… how the KCRC foundation was able to cut the time to vaccine almost in half. Understanding that over the next few years the funding at NCI was going to be cut by another 5% … we asked for funding for more FTE’s. We asked for grants with a longer lifespan than a year. We asked for Healthcare incentives instead of paving roads in corn fields. That money be spent dedicated toward finding a cure for the terrorist that is killing a growing population of American voters every day.   We were there to change the way cancer was perceived. That cancer is affecting lives that are not going to just roll over and take it. We are refusing to die, we are fighting for our lives and we have a purpose.

The responses we got were mixed. We had a Senator who came out of his committee meeting to speak with us, we met with staff people, we met in offices and in meeting rooms. At one point just before lunch we had to divide up to make the appointments as they were so far away from each other in location, yet close in proximity of time.

We had a lot of nodding heads. The extremes went from telling us that they would only be in office a short period of time and there was nothing they could do, to others asking us for specifics in budgeting needed for FTE’s at NCI.

All in all we came, we delivered our message. We had lawmakers and staff members sign the banners. We emphasized the need to channel more taxpayer dollars into cancer research and support of cancer survivorship after discharge from treatment. We reminded them of the 2,700 Americans that will die related to cancer over the next 3 days, the same number that died in 9-11. And the difference 1 FTE researcher can make in preventing that.

We were not Lobbying, we were giving testimony regarding how cancer has changed the lives of their constituents and that they need to think of cancer in a different light. In 10 years, cancer will become the #1 Killer of American lives over heart disease if nothing changes. They have it within their power to use our money to save thousands of lives. They just need to see the priority of Human life.

We left our last appointment in Senator Nelson’s office (Florida) feeling that we had been heard. Branan also managed to get a signed 8x10 photo of the Astronaut. We ventured out into the lightly falling rain onto the steps of the Capitol building where we added a few more names of our CCC family, and our fallen members. Then we lifted them up on the steps for the world to see. We were united in our battle. Our mission complete.

We returned to our bikes, relieved them of their shackles and rode back through the mall, past the monuments. I wondered, what would be the monument of our battle, fought here on our own soil? The best monument I could think of would be life. People continuing to pursue their passions and livelihoods no matter what cancer terrorist happened to find its way into their bodies. Riding bikes if they so desired, no matter the weather, no matter their condition, because it brought them joy.

I passed by other very special monuments on our way back to Steve’s house. I passed the spot where Jeffery Rowe lifted his bike on the path next to the Potomac River to celebrate his 1000^th mile for the year last year. I passed the celebrated “Dave Mitchell restroom” nestled in the FDR monument, and I rode the Crescent trail thinking of the wonderful ride I had last year on this very path sitting on Chris States’ wheel.   And passed the Lions on the bridges, that last year marked the arrival of the dream of Spokes of Hope. Already thoughts of the future of Spokes of Hope are rushing into our heads, but we are reminded by the wisdom shared by Dave earlier in Pittsburgh to live “vertically”.

Riding the trail back was kind of melancholy. The misting rain was blocked mostly by the canopy of the trail. I did splurge a bit and ride with a commuting lawyer for a bit at a higher rate of speed, but then saw that I was alone, separated from my Spokes family and bid him farewell. Reunited with Kathy, Jay and Branan we opted to wait for the rest of our crew. We waited quite a while and began to wonder what had happened. We got a call from Sharon that Laura had a flat. Before the words had finished, “Sherpa” Jay was already moving saying “I’m on it” as he pedaled back toward them. Kathy, Branan and I waited a bit more, but were starting to chill and moved slowly on up the path. When we arrived at the base of the final bridge, we stopped and waited again. The rain had stopped and we would get volunteer reports from riders on the status of the riders with the flat. So tempted to ride back to our fellow riders, but thought we would just be in the way on a narrow path. Tempted to move forward to Steve’s house to get cleaned up and out of the damp clothes, but dedicated to waiting and finish this, our last ride together… together! This was part of our mission. No one should have to go through the journey alone. 

Then the familiar yellow and black jerseys appeared and we were once again united. Spokes of Hope Indy – DC Spoke complete.

We returned to Sharon’s house in Mechanicsburg to sleep one last night before scattering into the wind.

So many thanks to so many people who, without their support, this would never have happened.

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.

  

Baltmore Maryland Spoke

September 14^th, 2010

Baltimore!

Last year we were very impressed with the University of Maryland Greenbaum cancer center, and this year we are even more impressed! Karen Warmkessel is the greatest media relations person! Last year with only 2 weeks notice, she pulled together a fantastic spoke, and this year they made it even better!

Interacting with the staff here, seeing how they truly love what they do, and love the patients. You can tell that they really care. They also see what we are doing and how we can add to the experience for their patients and facilitate our mission.

Roseanne Daugherty is a shining example of one of their staff who obviously loves what she does. She actually got into oncology nursing after meeting a cancer survivor in an exercise class. Roseanne is a triathlete and we met her last year and she made a lasting impression on us, as she does everyone she meets. Roseanne is doing the IronMan this year. Last year she did the triathelon with 140 liveStrong wristbands on her body and her bike… one for each mile traveled and with the name of a cancer patient written on each one. She greeted us once we arrived on the unit in her cycling clothes and escorted us around to the patients. We met with the patients on the bone marrow transplant unit. Met some Raven’s fans and some Steeler’s fans which started some interesting banter with our riders who were Colts and Buckener's fans…

We met a dashing 28 year old young man fighting lymphoma named Justin with a twinkle in his blue eyes that just screamed “I AM NOT MY CANCER!” . He beamed as we gave him a cap and a LiveStrong wristband.  Kathy Robinson shared with him her own fight against lymphoma 15 years ago, and how Mario LeMieux was going through his fight against lymphoma at the same time she was and how they both came out winners, and so would he. We had no doubt that he would. Not with his attitude.

Then we met Jessica, another 20 something year old survivor with a radiant smile and sparkling blue eyes. Even with her scarf and the apheresis machine pumping and clicking as it extracted her stem cells through her port. She looked like a model even if she was lying in a hospital bed, you could see the inner beauty of this young mother of a 2 and 5 year old. She had been in the hospital for what seemed like forever, but soon would be released to sleep in her own bed an d hug her kids again.

Elizabeth Saylor is the Ulman Foundation, Young Adults Patient Navigator, fully funded by the Ulman fund. They provide services and look out for the needs specific to survivors so often overlooked between the ages of 18 and 40 years of age. We were told that by this time next year there should be another Ulman foundation office in DC as well as a Patient Navigator in GW Hospital.  We would like to plan to include them in next year’s event schedule.

Another patient we met with in strict isolation, but wanted to see us anyway. In fact, we met her last year on our Spokes of Hope ride when she was in treatment. She had a little less hair than she did last year, but she still had the will and determination to fight. Her mother was in her room with her and we put on gowns and gloves in an airflow controlled unit to see her. She distinctly remembered us from last year, as we did her. She now had tufts of hair on the crest of her hairline that sat like a tiara on her head framing her face perfectly. She was charming and eloquent. We spoke about passions, and life. Strength and attitude. Our film crew cameraman came in with us, gloved and gowned and shot an interview with her.  Soft spoken, yet powerful. Dawn, I hope we see you again next year as a member of the spokes team, and not in isolation again.

We were escorted to a common area where they had prepared a reception for us. We met the Medical Director Dr. Kevin Cullin who presented the team with special running caps, and we presented him with a Spokes of Hope cap, which I must say looked quite good on him. He was delightful and engaging and you could tell was very proud, and rightly so, of his associate with the University of Maryland Greenbaum cancer center. He was obviously in good shape and said that he would wear our cap in his next run.

The reception, besides having wonderful food and drink for us, had a cake specially made with the Spokes of Hope wheel and “Cancer isn’t contagious…” words on it. And besides that… it TASTED good!  Very much appreciated by all.

I only wish I had more time to tell Dr. Cullin how impressed I was with the work being done there. You could tell that this was a special place for all who entered their doors.

Next we ventured down to the infusion clinic. Todd was the charge nurse, overseeing the welfare of all the patients in today. By this time we had become quite accustomed to people looking at us with our cycling uniforms on. It was amazing to see how it brightened faces and brought smile to once solemn expressions.  Jay said it best when talking with lawmakers a few days later. How he and Jan Frandsen, as healthcare professionals got totally different responses from patients when they were dressed this way, delivering perhaps the same message. The colorful lycra made a statement. That these people were not there because it was there job, but because they cared. And therefore, the patients were more likely to take their words to heart.

We met with patients from very different backgrounds. Men, Women, 24 – 89. Truck drivers, retired teachers, students, clinical psychologists and factory workers. All with different life experiences, with different cancers, but they all brightened and thanked us for coming to meet them. They all were affected personally by cancer, and they all were fighting to get their lives back. The staff and the patients signed the banners. Some writing messages to loved ones, some thanking us for pursuing our mission.  And some simply writing their names so that we could take them with us to DC.

The last lady we met before departing was soon to be 90 years old. Her daughter was wheeling her out of the unit. She was a breast cancer and melanoma survivor. We joked about looking forward to hearing her name announced by Willard Scott for her 100^th birthday on the morning national news. When asked what her passions were she said “Bingo and the slots”. When I told her that she looked like a “Winner” she replied, she didn’t care, she was "playing with other peoples money."

Before we left Greenbaum Cancer Center we gave them Cancer Resource guides as well as a box of Amgen’s Breakaway from Cancer flyers to help their patients find support after they were released from their wonderful facility.  

Our day in Maryland was not yet over. We met with a cycling group from the Ulman Foundation to bike ride in Columbia Maryland. Brock Yetso, the president of the Baltimore office rode with us last year on our way to Bethesda. This year with our change in format, riding with communities in a loop rather from point to point, he and his “Team Fight” team mates planned our route. They were all strong and skilled riders. Easy to see why by the roads they have in the area. They took us on the routes used for Triathelon races, and I can tell you, they have no flat roads in Maryland! I was told that these particular courses are considered some of the toughest in the country for Triathelons.

I was very thankful for the patience of the Maryland riders. They were very accommodating and apparently happy to watch after some of our riders who were not accustomed to so many climbs. Spokes of Hope’r Laura West was a very good sport. She never complained and always seemed to have a smile on her face even though riding in Tampa Florida never really prepared her for the hills of Maryland.

Patti Beahan had a contact lens decide to leave her eye on a downhill at one point and Kathy Robinson yelled “I LOVE HILLS” in honor of CCC’rs Marcia and Greg Dana.

I got to ride with a Cardiologist and had a great conversation with him about heatlhcare informatics. He shared with me his connection to cancer through his family. He strongly encouraged genetic testing and was a joy to ride with. I also rode with a racer who works at a bike shop and will be transitioning into cyclocross soon as the weather changes.

I was delighted that I got to finish the ride with Kim.  She is on the Ulman Board of Directors and is the mother of twin 18 year old daughters. She just exuded a joy of life and riding and I know we could be great friends and have awesome rides if we just lived closer. She has only been riding 2 years but demonstrates great strength and love of the sport.

All wonderful people and riders. The ride was a blessing. We exchanged caps and they gave us water bottles and we exchanged contact information.  Thank you for a great experience… We now see why the riders who come out of Maryland are so strong! (the racer was telling me about a friend who just went to track natz in Texas for the first time – 30 year old- and placed 5^th… on the podium!)

We packed up and Kathy met with her cousin who took her to dinner. We all went in search of food and Costco to get more film for the cameras. It was interesting walking into Costco with our bright cycling clothing on. We were quite used to it. But it seemed we were kind of mobbed like celebrities when we walked in. Not far inside the door a group was surrounding some of the riders asking them for advice on helmets. People were constantly stopping us asking what we were doing. These were all opportunities to spread our message, and spread the hope.

We arrived late to CCC’r Steve Friedman’s house in Chevy Chase Maryland. He and his family opened their home to us and we had a slumber party at his house. The end to another fine Spokes of Hope day.

Good Hope middle school / Machanicsburg ride

Monday, September 13^th  (the second half)

Harrisburg Pennsylvania

After leaving the Penn State Hershey Cancer Center, we traveled to Good Hope Middle School in Harrisburg. Annie Hine is health teacher there and is a Spokes of Hope supporter in Harrisburg – Hershey. A wonderful angel with a smile that comes from the heart. She helped arrange a Spokes visit to her school.

The Spokes of Hope team rode into the parking lot to be greeted by 900 middle school students and teachers, all lined up in 2 perfectly straight lines with a gap between them for us to ride through. They were cheering for us and as we approached, hundreds of small hands stretched out to us, beaconing to slap their hands. To see the joy in the faces of the kids as we made contact with them… the pride they had with each tap of the hand was a joy unfolding. I don’t know if the Tour de France riders ever felt the support we felt on that day, but it was a powerful experience for us to get to live out.

The schedule was for us to speak before the student body in the auditorium, but due to some technical difficulties, we ended broadcasting from the News crew room at the school. We all filed into the small studio and delivered our message regarding how to deal with cancer and how to prevent it, and how to interact with people living with cancer.

Afterwards the entire school exited the building again, each student and teacher banded with a yellow LiveStrong wristband, many wearing yellow shirts or LiveStrong shirts. They headed to the  running track and were walking around the track in support of our mission. We mixed in with the students. Some walking with them, others riding amongst them. Every student I saw wearing a LiveStrong shirt I made sure I shook their hand.  

Daredevil Patti had a small boy balance d on her bike as she pushed him around the track. Many of the students were wearing shirts with “Briana” written on them. Briana was one of their classmates who was diagnosed with brain cancer. She did not win her fight to live, but she obviously won a place in many hearts at this school.  

The spectacle was colorful, effervescent and full of life. The day was bright and so were the kids. They re-energized us.

A very special thanks to Annie 5Hines again for making this opportunity a reality. She can really get things moving… and you should see her on her bike… AND her tandem!

We left good home with hearts full… but tummies were empty. We stopped at the first place we could find near the school to eat. Applebee’s.  It was 3:00 in the afternoon and we had not eaten since early morning.

We stepped into Applebee’s and it was nearly empty. Again, we were dressed in our Spokes of Hope clothing and were immediately “noticed”… but we were used to this by now.

Instead of dividing up into multiple booths, we opted to all sit at the empty horseshoe shaped bar. This was excellent, as we could all see each other and talk. After we ordered, the manager came out and greeted us. It appears that he had recently lost his father in law to cancer. He signed our banner, stood with us for photos and took 10% off our bill. He told us that he would be happy to do what he could for the event next year.

We returned to the Duncan Lodge (it is a wonderful home…. Thank you Sandy and Randy!) and got the bikes back out for a ride around Sharon’s stomping grounds. Just for fun!  And it was fun. There were a few hills that were a bit of a challenge for those not accustomed to so many hills (sorry Laura from Tampa) and the wind was hammering us at times, but we were there, breathing in the sunshine and the colors together. Shared experiences are much richer when shared with friends like this. A

We were treated to be joined by Annie and her tandem partner Marie.  I had the opportunity to ride with them last year on the spoke to the capitol building in Harrisburg. What a strong pair they are on the tandem. It was quite tempting to take off with them and have the thrill of speed on our legs, but I also wanted to make sure that my team was taken care of.  They graciously understood and actually took our riders who were not enjoying the thrill of the hills so much to a short cut, and to their home where they got to watch the news were we were featured.

Upon returning to the Duncan “Estate”, we were welcomed by the smells of Lasagna in the oven. We showered and collected in the dining room, where Pete and Karen Collins joined us and brought spaghetti. It was a feast. Everyone was around the table. Nancy Tammi, Amy Rafferty (our newest survivor teammate), Annie and Marie, Sharon and Randy (our hosts), Patti from Pittsburgh, Kathy from Rhode Island, Ken, Jay, Harrison and Gary (the camera crew) and myself. The laughter,  conversation and food. Toasts were made and love was shared. It was the perfect ending to a wonderful day for the Spokes Team.  Life is best when shared with friends… and this life is good.

Annie shared with us that of the 900 students at the school that we met, over 500 of them want to join us on the ride in Hershey next year! That is incredible! She is already organizing the committiees to make this happen. Sharon will have an awesome event next year. This year isn't over and plans are already in place for next. Yee Ha!

Harrisburg Hershey visits

Monday, September 13^th 2010

Harrisburg / Hershey Spoke- The mission and the ride

After waking to the wonderful smell of pine and sunshine and clouds still blanketing the surrounding mountains we gathered the troops and headed to our first mission of the day. Londonderry School. Parker kocevar, our 9 year old returning champion attends this school and his parents Scott and Sandy own the “In Gear” bike shop that supported our ride. 13 of us all dressed in the Spokes of Hope uniforms paraded in and the school was out front cheering our arrival.

After meeting the students and the teachers and talking about the bikes, we all headed into the school where we gave a presentation to the student body. The speech was focusing on the benefits of exercise and what cancer was, how medicines taken to kill the cancer also can kill hair cells, how this is temporary and how people with cancer do not want to be treated any differently than anyone else… that they want “Normal” back in their lives. The riders were there in support, and Pete Collins and Patti Beahan were asked to give a brief account of their cancer experiences.

When we had all those who have or have had cancer in their bodies stand up, the majority of the riders stood. Then when we had those who have cancer in their families stand, almost 3/4 of the students stood. This amazed us. Did not expect that many of the students at this age to be so impacted. When we added the “a friend or someone you know” they all stood.

We then talked about what the kids could do to prevent cancer. Exercise and good diet… Do not smoke but do wear sunscreen. That most adults who get skin cancer have it because they got a bad sunburn when they were the age of the students. And the most popular advice… know your body. When I told them to know what all parts of their bodies felt like and looked like… but make you only did this at home, no touching yourself all over at school we got lots of giggles.

It was great to get to interact with the students. They were very receptive and supportive, respectful and genuinely interested. After our presentation, each student and teacher was presented with a LIveStrong Wristband. The teachers and Principal were delightful and obviously had the students well prepared. They too were amused at the reaction of the students when we gave them permission to touch themselves and know their bodies.

Next stop: Penn State Hershey Cancer Institute to visit with patients.

Parking the oversize Limo-Van with U-Haul in tow can be a challenge sometimes. Especially when it comes to Hospital parking. Ken dropped us off and we waited for his return. Meanwhile, the spokes’ mission continues. We met with patients in the lobby. Our first was a woman from the Ukraine, with her isolation mask and bundled up in a hoodie sitting in a wheel chair waiting for her ride.  She had a recent bone marrow transplant to fight her leukemia. We spoke with her, gave her a hat and she signed the banner apologizing for her shaky handwriting.  She may have been frail physically, but you could see the strength of spirit beaming through her bright blue eyes from behind the mask.

We entered the Infusion clinic armed to do battle with the fear and isolation so often felt when you are in chemotherapy.

The unit was divided into sections. They had the quick infusion stations, and then the individual rooms for patients with slower infusions. We visited with the slower infusion patients as we did not want to get in the way of the nursing teams.

We split up into groups so that we would not overwhelm the patients with our presence but also so that we could reach out personally to more people. We gave the patients and staff Amgen’s Breakaway from cancer flyers to help them find support resources beyond the chemo chair, we had banners to sign and hats and wristbands to give, but what we got in return was so much greater.

The typical scene is walk into an infusion suite and find a man or woman alone in the room, gray and covered with a white hospital blanket. IV machine clicking rhythmically as the life saving fluids dripped into their arm or port. At first they appear a bit perplexed at seeing the brightly lycra clad group entering their rooms. Obviously many have never seen cyclists as closely as this before. We great them and explain that we are Cyclist’s Combating Cancer… we are Spokes of Hope and we are there to connect those of us who have been through cancer before with patients currently in the battle. We talk to them, let them tell us about themselves, their family, their passions and their cancer. We in turn talk to them about attitude and hope. We explain the hats and the wristbands and they proudly take them and put them on with a bright surge of color and smiles. Their previous gray pallor yields to the blush of life.

Not once have we left a room feeling that our mission was not met, that a life was not touched and impacted in a positive way. Signing the banners has been such a powerful tool for them to feel that they a message , that they can contribute, that they will not be forgotten. And they will not be forgotten.

One of our team, I am hoping has benefitted from this experience as well. Amy Rafferty is just about to head into the chemo chair for the first time herself. Amy came to us with Nancy Tammi from New Jersey and she had no idea what to expect. She got to see what to expect up close and personal. That it was not terrible and she has heard from many on the team what measures she can take to deal with the side effects. Patti taught her how to tie a do-rag fashionably and she has a Spokes of Hope cap now… as well as our support. She also knows now that she is not alone. 

This is only half of our adventure documented for Monday… I have to go now as we are entering Baltimore. Will blog more later… got to go now and make more memories.

Hershey PA Spoke Ride Day

Spokes of Hope


Saturday, September 12th 2010

The day began departing Pittsburg with additions to our “Spokes-mobile” crew. Laura from Florida, Kathy Robinson from RI and Patti from Pittsburgh. We headed East to Hershey in the rain and fog.

We arrived in Hershey to be greeted by Sharon Duncan. Weary and worried, she rushed around making everything perfect for everyone arriving. Her organization skills and pulling the community together was impressive. She had food donated and volunteers leading out the different distances. She may be small, but she is mighty!

We were also greeted by the Knudson family, with Grandpa Andy Warner. The Knudson’s are a survivor family that we honored in Trexlertown. Jack is a 7 year old boy, with a new adaptive bike and a service dog who also just happens to have had pediatric brain cancer a few years ago. But that, and a little rain is not going to stop him from leading the group gathering in some parade laps before the news and documentary film crews.

Also joining us was Nancy Tammi and Amy Rafferty from New Jersey. Amy was just 2 weeks out of surgery related to her cancer diagnosis, and about to start her chemo. The fact that she was there with us, determined to be there and ride and be a part of this event speaks volumes. She WILL beat this cancer and join us in our mission in the future to help others in treatment.

Pete Collins joined us with his flags waiving proudly. His top flag was an American flag, flown over Afghanistan by his Son in an Apache helicopter, and a Spokes of Hope flag just below it. What an incredible statement he makes with his presence, and message he delivers with his words. He has great talent in representing survivorship.

Senator Pat Vance joined us in front of the Penn State Cancer Center and cheered us on as we departed. She thanked us for following our mission, and stated that she wished she had her bike so that she could join us.

The roads were wet and there was a constant “mist” of rain on the ride, but it didn’t matter… we were together and riding and we were meeting the cycling community of Hershey.

Hershey is a wonderful city, but it’s countryside is nothing if not HILLY! Great roads, great riders and we finished to a meal and a community of great people.

Jay Bodkin once again sacrificed his own needs to meet the needs of the Spokes Team as he cleaned the bikes before they loaded them. Pete Collins cleaned all the bikes of the crew that were staying with him.

That evening we collected at Sharon Duncan’s home. Sharon should be very proud of what she created that day. Rain or no rain, it was a success!

At Sharon’s house, we gathered together around a table of “nibbles” and basked in the glow of friendship. These are magical moments… Thank you Sharon and Randy for your hospitality and all the hard work and sacrifice you made in creating this special and memorable ride for so many.

Pittsburg_Spoke

Saturday, September 11th 2010


Pittsburg PA.

David and Anne Mitchell were our hosts for this Spoke. Incredible hospitality. I told Anne that the dirtiest room in her house was probably cleaner than my cleanest room. Anne is a breast cancer survivor and a nurse like me. She is also studying massage therapy and could teach classes in grace and charm. She is truly beautiful on the inside and the out.

We were up early and left for Gilda’s Club for “Bagels and Bikes”. This was a special Spoke, planned by Dave Mitchell… as it was how we met Patti Beahan last year, and now she was with us in full force. Last year she was just 2 days out of diagnosis, and had no idea how to tell her family or what she had before her in treatment.

Now Patti is done with all her treatment and has joined our ranks on the other side… she is a “spokes” person now and has been helping Dave plan this Spoke.

This year in addition to cancer survivors, we were joined by Oncology Nurses. Initially we started talking to people individually. The first person I spoke with was considering reconstructive surgery. So we talked about options, discovered that we both had dealt with “cording” and how our PT differed. She initially seemed quite conflicted and at the end of our conversation she seemed much more relaxed.

Next we all sat down and went around the room and shared our “stories” and then finished by signing the banners.

We rode from there to the Children’s Hospital. We crammed 9 bikes, 9 riders, 2 camera crew guys and a Hospital administrator into an elevator to go up to the Atrium level where we were last year. We met wonderful parents and children in the atrium. One father and son were there from Columbia. There for the son’s treatment. The Father spoke to me in his best English about his love of cycling. He was about my size so I let him ride around the atrium on my bike. His Son’s eyes lit up when he saw him riding around. Both smiled brightly. How wonderful it was to be able to bring light into their day of waiting and treatment.

After the administration saw what we were doing and could do, I was asked to bring my bike into the room of an 11 year old girl who had just had surgery. Her voice was still raspy from having the tube down her throat, but she appeared to be quite interested in the bike.

We left the Children’s hospital in search of food. The ride from there was all down hill from there and we went down to the “Strip District”. It was a Saturday at lunchtime and the district was alive with people shopping eating. We were hoping that we were going to eat some of the famous local food fare… but alas the line for the restaurant was wrapping around the building. So Ken stopped in and snagged some famous local donuts! What a variety of mini donuts he brought back.

Unfortunately for us, and hundreds of others, there was a big air show in town and traffic was awful. We didn’t get to eat lunch as we had to go straight to the REI to conduct a mini clinic. We did have an incident with a car door and fingers… but everything appears to be all right.

Attendance was very light for the clinic… so we just talked to people as they arrived at REI. Then Patti took us on a tour of Pittsburg on the river. It was a split second decision, as daylight was fleeting … but as we stood on the top of sycamore hill… the urge to just “go” won out. The Spokes ladies followed Daredevil Patti down a very steep and exhilarating 22% grade descent with crazy scary hair pin turns. Patti knew this hill well, but the rest of us were a bit more cautious. Then we crossed large bridges with bike paths that at times felt like we were threading the eye of a needle, the passage was so narrow. As darkness fell we rode on the lit pathways, past boats “tailgating” on the river. We saw a man riding a motorized beer cooler and the lights shimmering on the river. It was so such a thrill… not just the ride, or the night or the lights and the music… but to get to spend these moments with my “Spoke-sisters”.

We are headed to Dave’s house now for he has promised us “Smore’s”… then we will try to sleep and get up early for the trip to Hershey. Some concern for tomorrow, as it is predicted to storm. The rain just arrived as I type this. Hoping that is passes quickly through the night. But at this point we can only hope.