Cleveland Spoke- 9-10

Thursday, September 9th : Cleveland Ohio (Evening)


After a very successful visit to the James and feasting at Schmidt’s Sausage Haus we traveled to Cleveland. We were to speak at a dinner held for the Cleveland Clinic Pan Ohio Hope Team. They were the largest team and the biggest fundraisers for the American Cancer Society ride that raised funds for Hope Lodges of Ohio.

The room was filled with cyclists who worked at the Cleveland Clinic and some were friends or family and wanted to be on the team. I had been asked to speak about Spokes of Hope and a little of my personal story. Jan Frandsen, Ken, Madison and I were rode the very first Pan Ohio Hope ride. This was the fourth year of the ride. We met riders who were very experienced and riders who were very new to riding. They all shared the joy of riding.

I was so excited to get to see Jan again. The last time he saw me I had little to no hair. Jan is a very very special man. His connection to cancer is that he cares. He is a Nurse Practitioner in Palliative care and makes a huge difference in people’s lives every day. Jan was there when Spokes of Hope was first developed and has supported it ever since. At that time I was going through treatment for reoccurrence and Jan, Mary Trufant and I were riding and I was wearing a cap to cover my bald head. My cap flew off revealing my miserable hair loss, and Jan picked up my cap and keeping his eyes lowered returned my cap to me along with my dignity. He touched me so deeply with that tender gesture, I cannot put into the words how gratified and honored I was by this simple act of kindness and understanding. A true “Gentle Giant”

So I was thrilled to see Cathy his wife there, and she told me that Jan was delayed. Then when he arrived he gave me a wonderful hug… and all was right again.

The Team Leader was Pat Surdy. They had photos of the ride and a framed jersey on display. A wide variety of people were there, all with very interesting stories to share.

There was only one other survivor in the room however. All these riders were there because they cared… they cared about riding and cared about helping the ACS with the Hope Lodges. These were very special people. And I was very honored to be there with them.

Another highlight for me, besides getting to see Jan and his lovely wife Cathy (who chose to celebrate her birthday with us!) was meeting the other survivor in the room. Her name tag said her name was “Scottie” and she was a “firecracker”! I was so taken with her and her enthusiasm. She is going to try to ride the Pan Ohio Hope ride next year. She couldn’t this year as she still in treatment.

I shared some personal stories with her and we bonded like survivors so often do. She thanked me for helping her, for inspiring her… and I felt awkward because I was just being “Me”… It feels weird when people tell you that you “Inspire” them. I don’t think I could have lived my life any other way.

Scottie shared with me that she was wearing a wig. And I must say it was a really good looking one at that. It looked very good on her. I gave her a spokes of Hope cap and after some foolishness on my part, she put it on. She handed me her wig.. so I put it on my head. We had our photo taken together… then she put the wig on over the cap and it made her look like she was ready to play tennis. I will try to post it later.

I hope she comes to the Spokes of Hope Bike Camp in the Spring!



Friday, September 10, 2010

Cleveland Ohio

Today we were joined by two more Spokes of Hope “Spokes”men! Jan Frandsen and David Mitchell. Dave could be considered a rather “mellow fellow” when first you meet him, but don’t let that fool you! He has a real need for speed!

We were also joined by Fred from the Pan Ohio Hope team from Cleveland Clinic. We meet him the night before. Fred is a true cyclist… as he does not own a car and all of his transportation was on 2 wheels. He directed us through town to the Cleveland Clinic.

Once at the Clinic we were greeted by the staff there. They were delightful and supportive of our mission. We appreciated that they understood that we were there for the patients and wasted no time at all in helping us. We were talking to patients before we had even entered the building!

We had the banner out and people were signing it and sharing their stories with us in the lobby as well. Then we made it to the infusion unit.

Most all of the patients we met were breast cancer survivors. And all were metastatic cancer survivors. We talked to them about resources available in their communities. Several were under the age of 40, so shared information regarding the Young Survival Coalition and gave them flyers from Amgen’s Breakaway from Cancer.

We met with the nurses in the break room and they signed our banners and posed with us for photos. One of the nurses had an Eastern European accent and she told us that they called her “Zha Zha”. She was also a breast cancer survivor. She was very happy to share with us her story.

Renee was the Social Worker at the Clinic, and you could really tell that she cared a lot about her patients, and she really understood what we were trying to accomplish. She thanked us several times for being there… and told us that we were able to reach the patients on a level that the clinical staff could not. We had decided that it was something about our coming in the clinics in lycra cycling clothing that got a different reaction from the patients. We were there because we cared… because we understood, and it was not our job to tell them the things we were sharing with them... but our mission. So they were able to hear what we had to say.

I think it was obvious that we loved being there and meeting the patients and staff. You could tell by the expressions on the faces we met that they were happy that we were there too.

The Cleveland Hope Lodge:

We rode from the Cleveland Clinic to the Hope Lodge. The American Cancer Society has a beautiful building designed to house cancer patients in treatment with a care giver comfortably till their treatment is over. This could be a few days, weeks, or months. Everything to make the patients more at ease with what is happening in their lives and not cost them anything.

We entered the large dining area and all of the Spokes of Hope “spokes” persons went to different tables and introduced themselves and started talking to the residents.

I was drawn to a blond haired blue eyed handsome gentleman who traveled to Cleveland for treatment from Porto Rico. His family was from Cleveland. He was on his forth reoccurrence. Bob was his name and he had quite a sparkle in his eyes. He shared his story with us, about how a simple skin cancer invaded his neck, jaw and now his tongue. This made it difficult for him to swallow and speak, and he had a lot he had to say… and a lot left in his life to do. We told him about the banners, what they represented and that we would be honored to have his name on the banner to take with us, he thanked us and got misty eyed as he said that it was great to have us as a “mouth piece”.

Another couple there traveled from Florida for treatment for Leukemia. He was determined that he was going to ride the Pan Ohio Hope ride next year but didn’t think he had the skills to do it. We told him about the Spokes of Hope bike camp in the spring that happens to be in Florida. He said he would be there. He was absolutely delightful and had a great sense of humor!

We wrapped up our Cleveland spoke by riding around the Cancer Survivor’s Plaza, then traveled to the Lakeside on a gorgeous blue sky day, with a light wind to take in the sights of the Rock and Roll Hall of Fame, the lake and the Browns stadium.

What an awesome day!

Tomorrow… Pittsburg