By T.J. Sharpe, Melanoma Survivor, Blogger & Cancer Advocate
Last Monday (May 1), the first Monday in May, was the unofficial kickoff to Melanoma/Skin Cancer Awareness Month; “Melanoma Monday” as has been (unofficially) labeled by the American Academy of Dermatology. This annual push is meant to increase awareness of skin cancer prevention, detection, and treatment just as summer is approaching.
As a two-time melanoma patient, I have run through the gamut of emotions a cancer patient can have. I’ve experienced being on the receiving end of the “this is scary, but could be a lot worse” Stage I diagnosis as well as the “I’ll be surprised if you are still here in two years” Stage IV bad news. Writing about this disease, and connecting with other patients over the last half-decade has offered me insight into the few things I haven’t experienced first-hand as a patient. This has truly become a personal crusade.
When the Melanoma Just Got Personal campaign was launched in 2016 by Novartis with the support of the major melanoma advocacy organizations, it gave a louder voice to those affected by the late stages of this cancer. It pushed the sustained difficulty of an advanced melanoma diagnosis into discussion. Having followed the campaign and hundreds of melanoma patients, this is one individual’s take on what melanoma really is.
Melanoma IS personal. It has tried to take everything that I’ve wanted away from me; as my wife Jen once wrote, “melanoma is a thief” that steals happiness, health, and hope. It has led me through an often dark and trying journey – physically, mentally, and emotionally. It invaded a young family and injected chaos into every dream, every plan, and for a long time, each and every day. It turned the most important job of my life – being a Dad – into the byproduct of fending off the uncontrolled division of abnormal cells1.
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T.J. with his wife and children at a family wedding in 2016
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T.J. with his family the day before his bowel surgery in 2012
Melanoma is personal when another new person is added to our online support community, asking the same fearful questions with the same anxious neophyte knowledge gap. It is personal when patients are looking desperately for encouraging words and advice from others. It is personal when Facebook and Twitter feeds stop looking for answers and go hauntingly silent. It is personal when those patients’ contact entries get archived, joining the ever-growing list of “colleagues” you will never hear from again.
Melanoma is personal because of the families who carry on the legacies of husbands and wives, sons and daughters; those who raise money in memory of someone taken too young, too healthy, too full of promise and future. Parents who never fully recover, siblings who will not have their best man or maid of honor stand by their side, spouses who never RSVP with a plus one.
Melanoma is personal because of children – the ones whose widowed parents post smiling photos on social media feeds to mask the unimaginable loss and emptiness. The children who will only remember a parent from photos and stories, or whose families are shattered even when a full recovery is made – the ones who grow up learning about illness, death, and heartache long before they understand fractions or long division.
It is also personal for the children who haven’t yet been affected by melanoma, or even made aware. The ones who will be teens one day, and then young adults, and have the chance to mitigate exposure to this disease with simple awareness and prevention when they are at the most vulnerable – and vain – age. Before a tan transitions from “something I need for prom” to “something that might kill me in a few years”.
Melanoma is personal for the silver linings it has brought. For all of the bad it rains down on thousands upon thousands of lives annually, it is at the forefront of cancer immunotherapy research. Research that may impact 600,000+ lives expected to be lost to all forms of cancer, annually, in the coming years2. It is personal for connecting networks of patients – and caregivers – to each other in a support system that can only be created by a shared similar experience.
It is figuratively personal for me because I have directly contributed to the advances made in melanoma and cancer treatment via clinical trial participation. It is literally personal because I have skin in the game – all puns intended. Melanoma has become personal in every aspect of my life; it has changed my relationships with family, friends, and God, and altered my health, my future, and my career. There is nothing from our lives prior to the summer of 2012 that hasn’t been affected by this disease.
So as we kick off Melanoma Awareness Month, let the cognition of the impacts of this disease flow both ways. For the future patients, it will change your life in ways you cannot imagine; do what you can to ensure it never gets personal. For “melanoma” – if a disease reads blogs – know the medical community and the patients whose lives you disrupt are not taking your diagnosis as a death sentence. Our lives depend on it. For us - it’s always been personal.
This is the third installment in a series of blog posts authored by patient and advocate T.J. Sharpe for NovartisOncology.com. Be sure to check back regularly for new installments in this series by T.J. Sharpe. Learn more about T.J.’s story here.
*T.J. Sharpe is not a medical professional, but a patient currently undergoing care for advanced melanoma. He is being compensated by Novartis Oncology for sharing his story. All opinions are his own. Any and all information, tips, advice, etc. included throughout his series of blogs stem from his own personal experience as a patient. Patients should always consult their doctors when seeking medical advice.