08
Mar

Polka Dot Mama Meets Patient #1

Tracy first met TJ aka Patient 1 during the 8th annual Melanoma Research Alliance Scientific Retreat in Washington DC. She describes TJ as one of those people that you meet and feel like you’ve known forever. “Not only is TJ funny but he is very relatable. TJ is one year younger then me.”

TJ has Stage 4 metastatic melanoma. At the age of 25, TJ was diagnosed with Stage 1b Melanoma on his chest. Twelve years later,  in August of 2012, he walked into the ER with a spiking fever—and didn’t leave for over two weeks.  Melanoma tumors were in both lungs, his liver, spleen and abdomen.  His oncologist told T.J. and his wife that he would be surprised if he survived for two years. Over three years later, six surgeries and two clinical trials TJ’s battle continues.

Although Tracy was fortunate enough to meet TJ in person, my phone conversation with him was nothing less than enjoyably uplifting. We discussed issues that went beyond his diagnosis, but tackled key issues that many people are faced with when treating melanoma or other forms of cancer, including healthcare. Ah yes, as if having melanoma was not the only thing one should worry about, but when you don’t feel as if your healthcare providers are helping in every way possible, frustration is the light way to define one’s feelings. After seeing an oncologist who hadn’t specialized in cutting edge melanoma treatment, he felt his oncologist’s answer wasn’t good enough. The solution? “I went and got four different second opinions,” he said, which led him to participate in a clinical trial. After much deliberation he bypassed waiting for the legalities of the clinical trial and immediately started. “I don’t have time for soon,” he stated, “I have time for now.”

He has sound advice for those who feel like they aren’t being taken seriously with treatment options, or who feel like they aren’t being treated in the most effective way. “If you’re not sure or you’re not comfortable with the advice you’re given, always get a second opinion, no matter where you are. A good doctor will encourage you to do that.”  He went on, “No matter what type of cancer you have there are advocacy groups for everything. Not only are there personal connections (in advocacy groups), but a lot of them will be able to help you navigate clinical trials or treatment options. No one is an expert when they get diagnosed, but there are people out there who are.”

If you have not seen, TJ is the voice behind the Patient 1 blog. His blog began from a chain of emails that took a positive, slightly humorous view on a very dire situation.  He was lucky enough for Philly.com to pick it up, and the website has been publishing insight on his journey since the end of 2102.  T.J. expands to touch on the human side of cancer and how it affects more than just the patient.  He also explores general cancer-related topics, and he hopes the blog and his outlook will set the bar high for those who are or will face their own cancer challenges. T.J’s message: “Stay Strong—nobody fights alone.” The evolution of his blog really began when he was first hospitalized in August of 2012.

“At 37 being a dad, your perspective changes a lot.” He drops in a quick joke, “I don’t want to say its maturity because no one has called me mature, but it was knowing that this is part of life and also realizing that hey don’t take life too seriously, no one gets out alive. The dichotomy that it’s serious but it’s a part of a bigger process.”

“I was given another chance to experience life, and a platform to do so.”

His goal is for people to gain a different, and healthy perspective from his blog. He was floored when his blog took off and was receiving attention from around the world. “It became somewhat of a responsibility to relay my experiences personally and in the medical world.”

Lastly, the topic of research was discussed. The Melanoma Research Alliance is one of the biggest fundraising nonprofits for melanoma research and has been an ally with Polka Dot Mama in efforts to develop new trials and medicine. “When anyone is supporting a group that contributes to research, they aren’t just donating so scientists can fill a vial somewhere. It allows some cutting edge researchers and trials to get off the ground because a lot of them actually depend on private funding. It pushes them to try things a little outside of the mainstream medical community. That enables researchers to take risks and accelerate the pace of the trials. These risks can turn out to become things that advance treatments for cancer.” An example of this is the clinical trial of the drug Keytruda, which one of our melanoma warriors, Caitlin Govero, discusses with us in the blog post here.

As Tracy said, “Not long after meeting TJ I knew that his voice and his journey was an important one to share. I not only asked him if we could interview him for our blog series “My Spots Tell a Story” but I also asked him to fly to NC to participate in an awareness video we are launching at our Taste for a Cure: Chef’s Gala Benefiting Melanoma Research. TJ is alive today because of research studies and being given the chance to try new therapies. Had TJ listened to his first oncologist he probably would not be here today (#117: Dear Doctor Barry) We are honored to have the Melanoma Research Alliance as our charitable ally. The net proceeds from the Gala will be donated to the MRA to fund research. This research helps save lives and gives people like TJ a chance to live.”
At one point in our conversation he struck me with a quote that really encompassed everything Tracy described him as.  “I’m just one person. I can’t make a difference in the lives of everybody but I can make a difference in the life of somebody.” For more of his amazing trials and tribulations guaranteed to provide tears and laughter, click here.

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