Steve Alexander, from Cortland, set out with ambition to do what most people with cancer cannot afford to do - help other people with cancer pay for their costs. He knows first-hand exactly what those costs are because he was diagnosed with multiple myeloma in January 2012.
According to Dr. Jason Valent of the Cleveland Clinic, Alexander's doctor, there are 23,000 new cases of multiple myeloma each year in the United States, and it is the second most common cause of hematologic cancer, or blood cancer. Just in the last 10 years, the advancements have been great, increasing many patients' prognosis from just two years to about eight years or longer.
Currently, there is no good way to detect multiple myeloma in its early stages, and there is no concrete way of knowing what causes it. To complicate matters, the symptoms of multiple myeloma can be confused with other diseases.
"There are a variety of things but basically symptoms related to anemia like low blood counts, shortness of breath and fatigue," Valent said. "Symptoms related to bone disease, also. It is very common with this cancer to have involvement with the bone and the most common would be bone pain or fracture. The other is symptoms of kidney disease which usually manifests as swelling or, in the worst case scenario, decrease in urine output and kidney failure. Unfortunately, Steve had all of those."
Alexander saw while being treated the effect that cancer can have on a family, and it startled him.
"I was talking to other patients in the hospital, and they were worried about being able to pay for all of their bills," Alexander said. "It really kind of struck me when a gentleman said that he didn't know if he was going to be able to keep his house. That's when I wanted to try to do something. Since I ride motorcycles, I thought that maybe I could tie my riding motorcycles into raising money for other people."
About multiple myeloma
Symptoms related to anemia
low blood counts
shortness of breath
Symptoms related to bone disease
Symptoms of kidney disease
decrease in urine output and kidney failure
The causes of multiple myeloma are unknown, but it has been associated with Agent Orange exposure in Vietnam War veterans.
"There isn't necessarily any screening that is recommended for this type of cancer," said Dr. Jason Valent of the Cleveland Clinic. "There are some patients that it is recognized earlier because of a preexisting condition called a monoclonal gammopathy of undetermined significance (MGUS).
"A lot of times, there is no good early detection for this unless you are being followed for this MGUS condition, but the biggest thing is if people have symptoms of persistent pain that it's evaluated. It's one of the less common causes of back pain, but certainly it's one of the big, concerning causes of back pain. That's one of the ways, unfortunately, that the diagnosis gets missed is because someone will be complaining of back pain and they will say that it is just a muscle strain or it's just a disk problem, and until you do specialized imaging, like an MRI, you cannot see the destructive changes of multiple myeloma."
"I actually waited too long before I sought out medical attention," said Steve Alexander, founder of the Ride for a Purpose Foundation. "My symptoms were that I had a lot of pain in my chest. I just thought that I had pulled a rib cage muscle or something. Then I had a lot of pain in my back. I pretty much ignored all of that and went about my business. Come to find out that I had lesions on my ribs that required radiation treatment. I have five compression fractures in my spine that causes me a lot of problems still. One of the things that multiple myeloma does is that it weakens the bone structures and the bones. It's very easy for fractures to occur. I ended up with spinal fractures. Other people end up with a broken arm or leg.
Initial treatment is usually a combination of chemotherapy. Common drugs used are: Lenalidomide, Revlimid, Velcade, Vexamephasone
Stem cell transplant
Ride for a Purpose: Rideforpurpose@gmail.com
The Yellow Brick Place: www.yellowbrickplace.org
YBP Resource library: Managecancer.org
On June 18, Quaker Steak and Lube in Warren will be donating 15 percent of proceeds to Ride for a Purpose Foundation.
Shortly after Alexander's treatments were completed, he made a plan to raise funds that completely help people, not research. He developed the Ride for a Purpose Foundation and organized a motorcycle ride that would help raise money for people that needed help paying for what Alexander calls "the true cost of cancer."
"When I say 'the true cost of cancer,' everybody knows that radiation and chemotherapy are expensive, but there are other costs associated with cancer that people don't realize, like travel, medications ... you gain and lose weight and have to buy clothes," Alexander said. "I had to buy clothes three separate times due to my weight gain and loss. Say a family member is paying for medication, for example. If I can help someone buy their medicine, that means that they might be able to pay their electric bill or a gas bill. That's pretty much what the foundation is for."
During the ride last year, Alexander went through 22 different states, parts of Canada and rode more than 6,000 miles, meeting up with other riders at different points on his journey. Along the way, he would stop at YMCAs for fundraising events. Altogether, he ended up raising around $18,000 total, with $13,300 going to the Cleveland Clinic Taussig Cancer Center.
As for what Alexander had in mind for this year, he expects a better turnout than last year but he plans on doing the ride a little differently.
"I can't do what I did last year," Alexander said. "It really took a lot out of me. So what I am doing is a series of smaller rides. I have rides scheduled for Indiana, Louisiana, Tennessee, Michigan, Illinois and Ohio. On June 18, the Quaker Steak and Lube in Warren is donating 15 percent of the cash receipts that are turned in to Ride for a Purpose Foundation."
Donna Detwiler, co-founder of the Yellow Brick Place, a non-profit cancer center, hosts a monthly multiple myeloma cancer support group that Alexander attends. It is held the third Monday of every month at Denny's Restaurant on Belmont Avenue. The group is specific for multiple myeloma and their caregivers. Detwiler is also a multiple myeloma patient and survivor of 11 years.
Alexander began attending the support group through a friend who was also undergoing the stem cell transplant at the same time.
Although Ride for a Purpose and the Yellow Brick Place are two separate non-profit organizations - Alexander has more of a specific goal while the Yellow Brick Place has a broader spectrum of purposes - they will be resources for each other.
"I think that his goal and our goal is that if you can help at least one other person, then you have done your job because when you are in that situation, even if you do know how to navigate it, it strikes you and your family it is an overwhelming thing," Detwiler said. "There is hope out there and we are just trying to provide that help along their journey as much as we can."