From the moment he was diagnosed with multiple myeloma in 2007, Jason Carpenter decided to make one thing perfectly clear.
“I chose from Day 1 not to be a victim,” the 43-year-old Chicago resident said. “I’ve never asked, ‘Why me?’ In fact, I’m glad if someone had to get it that it was me, and not some 10-year-old in the Bronx without a support system or health insurance. I’ve always said I had the shoulders to carry this kind of burden.”
After many highs and lows that came about while battling the “burden” that was multiple myeloma, doctors told Jason he was cancer-free this past February.
“Doctors have told me I’m in remission before but this is the first time it’s lasted more than two months so I’m very excited about that,” he said.
Jason’s almost 10-year fight with multiple myeloma has been like a rollercoaster, and the longtime journalist who recently served as the videographer for LifeSource’s Top 20 luncheon decided to take anyone interested along for the ride.
Shortly after learning he had cancer Jason went out and purchased a video camera which he has used to document his battle on his YouTube channel. Since 2007, Jason has posted approximately 80 “raw and unscripted” videos resulting in more than 500,000 views.
“Part of not being a victim was to document everything,” Jason said. “[This was done] to help others with the disease and to educate those who don’t understand the disease. I just hit record and started talking. The videos were raw, honest and in some cases emotional. I needed to show the real side of cancer.”
A resident of New York City before moving to Chicago, Jason said the origin of his cancer stems from the terrorist attacks of Sept. 11, 2001.
“I was living three-fourths of a mile from the World Trade Center, and doctors have told me that smoke inhalation from the smoke cloud [from the Twin Towers collapsing] is the cause of my cancer,” he said. “Every day for the next three months [after 9/11] my smoke detector was going off. That’s how much smoke there was in the air.”
A healthy man in his early 30s, Jason was surprised when he began experiencing back pain in 2007. He initially believed the discomfort was caused by an uncomfortable mattress and still vividly remembers hailing a cab in New York City and tying the new mattress he had just purchased to the roof of the vehicle.
“You don’t need a car if you live in New York City,” he said.
When the new bed did not solve the problem, Jason went to a physical therapist who recommended a series of workouts to try to combat the pain. Working out the area only caused additional swelling and eventually left him nearly incapacitated. Jason was in so much pain he was unable to tie his shoes. While rocking back and forth to try to gain enough momentum to reach his shoes, Jason fell forward, struck his head and blacked out momentarily. When Jason awoke he was unable to walk and had to call 911 for help.
“I got to the hospital and the doctor told me I had a compression fracture,” Jason said. “The doctor asked me if I had fallen off a horse or sustained some other type of fall because a compression fracture only happens when you fall or have cancer.”
Three years and around a dozen chemotherapy treatments later, Jason was considered “without options” by doctors before he was given the opportunity to partake in an experimental bone marrow transplant. The procedure was not without it risks as statistics show one out of every five patients does not make it home from the hospital.
During these life-saving treatments, Jason said he received countless transfusions of blood as well as bone marrow from a man in San Jose.
“It’s people like those who LifeSource recruits to donate their marrow and blood who have saved my life,” Jason said. “More than once I was left for dead, and the compassion of others brought me back from the brink.”
Many took notice of Jason’s very public battle with cancer including YouTube itself. The video-sharing website named Jason as one of its 20 most influential users during its five-year anniversary celebration in 2011. YouTube even sent a filmmaker to follow Jason around for a mini documentary that appeared on the site.
Jason said he initially started posting on YouTube as a way to keep his family updated on his cancer treatments. Along the way he ended up getting followers from around the world, including Japan, Germany and the United Kingdom.
“I started having people from around the world recording videos in response to mine,” he said. “It was incredible. These people became great supporters and picked me up when I was at my lowest.”
With his health now stabilized after three bone marrow transplants and numerous rounds of chemotherapy, Jason has shifted his focus on giving back to the cancer community through products he has developed to treat the side effects of the constant treatment. One Veda, named after his dog “Veda” who he said is a constant source of love and companionship, is a line of eight products designed to help nourish, soothe and calm damage to the skin, hair, scalp and nails caused by chemotherapy.
“Like a true journalist, I started asking questions,” Jason said. “Many of my fellow chemo clinic patients were older ladies who had their own home remedies which I began to mash up into my own creations.”
For every One Veda product purchased on his website, Jason said one will be donated to a cancer patient undergoing treatment. Founded in the summer of 2015, One Veda has already donated nearly 5,000 products, Jason said.
“It feels great to give back and help those who are undergoing the same procedures that I went through,” he said.
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