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Mon, Aug 20, 2018 10:00am

After Diagnosis, Patient Cycles Across the Country and Raises Money for Research

By Mayo Clinic Hematology Staff, @mayoclinichematologystaff
8_20_18_Edgerton

Although he had just been diagnosed with a rare blood cancer, Chris Edgerton was not about to slow down. Instead, the diagnosis pushed him to work toward a lofty goal.

Chris Edgerton was working in his garage when he started feeling unusually tired. "I was trying to put a screen up and I just couldn't do it," he tells us. Surprised but not overly concerned, Chris mentioned this to his doctor during his annual physical. "I told her I felt tired all the time and that was unusual for me," Chris says. "I told her I didn't feel like myself."

Chris' doctor sent him for blood work. Having worked as a nurse in his native England before moving to Florida, Chris didn't have a good feeling about what the results would show. His suspicion was soon confirmed by his doctor, who recommended he see an oncologist/hematologist. Chris' wife, Deirdre, took charge from there. "She said, 'OK. Then we're not messing around. We're going straight to Mayo Clinic,'" Chris tells us. They soon met with Sikander Ailawadhi, M.D., an oncologist/hematologist at Mayo Clinic's Florida campus. After a battery of tests, Chris was diagnosed with Waldenstrom macroglobulinemia, a rare, slow-growing blood cancer.

Chris didn't want to take his illness lying down. He knew that his diagnosis was serious. But his bucket list beckoned, so he decided to focus on that. "Riding a bike across the United States has always been on that list," he says.

So after agreeing with Dr. Ailawadhi on a "wait and watch" treatment plan, Chris got on his bike and started training. "I began by riding nine miles," he tells us. "I had to stop and rest after the first five, so I knew I had some work to do."

Then Chris found a company that organizes a cross-country bike trip each year, transporting bikers' belongings from one hotel to the next, and even organizing meals. "I basically just had to cycle from hotel to hotel along the way," Chris tells us.

On May 13, he set off on his journey. And though it wasn't exactly a coast through the park, Chris tells us the memories he made, people he met, and money he raised for Waldenstrom macroglobulinemia awareness and research at Mayo Clinic, made all that pedaling worthwhile. "We met people all the way along, and I also met a few other people with my same disease who'd driven to some of the hotels just to say hello and cheer me on," Chris says. "And for us to have raised, at the moment, almost $50,000 for Mayo Clinic is quite humbling. Those were things I never contemplated happening."

Not bad for what Chris thought was going to be "just another" bike ride. "When I started I thought, 'It's a bicycle ride. A very long one, but just a bicycle ride,'" he tells us. "But it's obviously turned into something more, and to have people who I've never met send such nice messages of support is beyond words."

You can read more about Chris and his cross-country cycling adventure on his blog. Then, coast over to leave a comment below before using the social media tools atop this page to share this story with others.

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What great story. God bless…
Jackie

@travelgirl

What great story. God bless…
Jackie

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I find this story to be Unrealistic. I have a Blood Cancer and when I was Diagnosed I was so weak walking to the bathroom was an Olympic Event!-This story is FAKE NEWS!

Hi @mayoleukemia, welcome to Connect.
I can understand your reaction to this story. The article doesn't go into details about the fatigue, and trials and tribulations that Chris faced on the road. The journey may have also included many setbacks.

What your post underlines is that every cancer is different AND everyone's experience is different. Chris has Waldenstrom macroglobulinemia, a rare, slow-growing blood cancer. His physical and health status may not parallel yours. Also the condition he was in to make the journey may not be his reality later. I don't know enough about him or his condition to say for certain.

What I do know is that his fatigue is not your fatigue. I thank you for pointing that out. Fatigue and cancer can be so debilitating. Like you said cancer-related fatigue can make "walking to the bathroom an Olympic event."

@mayoleukemia, what type of leukemia do/did you have? What treatment did you have? Was your fatigue worse before, during or after treatment? How do you manage your fatigue now?

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