Rare Disease Day: Sean Wachter’s Story
RARE DISEASE DAY IS ON FEBRUARY 29TH AND IS A DAY DEDICATED TO RAISING AWARENESS FOR PATIENTS, FAMILIES AND CARERS AROUND THE WORLD THAT...
“I have mixed emotions on a regular basis. On one hand, I’m so happy and grateful because I found a treatment that is working, but on the other hand I have to live with the fear and anxiety for the rest of my life. It’s always in the back of my mind.”— Danika
While most people understand that being diagnosed with and receiving treatments for cancer is a terrifying ordeal, even if they have not experienced it themselves, many people tend to think that these struggles fade as patients finish their treatments and move into remission. This is not the case; cancer survivors and long-term treatment patients, especially those that have battled melanoma, experience unique challenges. I make this distinction between those who have fought melanoma and those who have fought other cancers because they are a relatively new population: over the past fifteen years, survival melanoma rates have risen considerably due to the advent of biological and immune system repression therapies, or immunotherapies. Whichever medication sees a patient through their treatment process, the end of their battle with cancer does not coincide with the end of their treatment. Depending on their comfort level and the kind of cancer diagnosis, patients undergo check-in tests once every six months, or yearly, for the rest of their lives. Their cancer, and the potential of its return, is a constant shadow.
“I remember not being able to physically climb stairs, but today, after treatment, things are getting better and easier to navigate. I can’t always see what is around the corner, down below or what will be there when I reach the top, but I still take the steps to get there. One step at a time, one day at a time. I feel like every day since my diagnosis four years ago, I still consciously, every day, make the decision to take ‘the steps to get there.’”—Natalie
While life ostensibly begins to return to normal once treatments are finished, this is simply not the case. Reconciling returning to work, if this is even possible, and resuming ‘normal’ relationships with friends and family is difficult when patients have a stretch of time in their memory that is indescribable to those who have not experienced something similar. The anxiety surrounding the return to regularity is exacerbated by these intermittent appointments, which interrupt the progress of rebuilding a ‘normal’ life. As a diagnosis of cancer increases the likelihood that it will return, the fear of recurrence is present in the anticipation of every appointment, and everything else. Life is forever changed.
“Sometimes no matter how tough the journey, there were beautiful days. No cars on the road, and a clear sky. This is how I felt later on in my journey. I started seeing that there is hope.”—Mike
While a cancer diagnosis is never desirable, some good may come out of these experiences. On May 10th, in the midst of Melanoma Awareness Month, Save Your Skin hosted the Giving Hope Gala & Auction. While the evening was a wonderful success, the one of the highlights was Mike, quoted above, colluding with Natalie, also above, to surprise Kathleen Barnard, Founder of Save Your Skin, at the event. The three are close friends, two are colleagues, and all three are melanoma survivors. They met through their diagnoses. They support each other, and create a space where they can talk about their experiences with others who understand. Further, they act as a voice of hope for current melanoma patients. Through our I’m Living Proof initiative, and other programs like it, melanoma survivors are given the opportunity to connect with patients in any stage of their melanoma journey. They are able to mutually support, advise, and give hope to each other. While melanoma survivors may never return to their life exactly as it was before, part of their new lives, hopefully, can be the mutual support of each other and support of patients currently battling melanoma. This Melanoma Awareness Month, we would like to remind you that the melanoma journey doesn’t end for survivors, and that their life after treatment is often vastly different than it was before. They are a valuable population in the melanoma community, and one that is worthy of our continued support.