Being a sun protective clothing company that is continuously looking for ways to raise skin cancer awareness, we donate often to skin cancer awareness causes and events. As many of our readers know, the desire to raise awareness and promote sun safety is rooted deep within our company’s history, as UV Skinz began after founder and CEO Rhonda Sparks lost her husband to melanoma at the age of 32. When Rachel reached out to us requesting assistance with helping to educate others about the importance and convenience of sun protective clothing, while also benefiting the Melanoma Center at MD Anderson, how could we say no! Here’s a short blurb from her original request:
“After my melanoma experience, I became an avid purchaser of sun protective clothing, both for myself and my son, and encourage my friends to do the same. I thought it would be terrific if we could auction off some UPF-protective clothing, maybe shirts/blouses, cover-ups, or hats, etc. I think that when people think of UV protective clothing, they think only of rash guards, and it would be nice to show them that there are other options as well.”
Rachel’s event was a success (to say the least!), and resulted in nearly $10,000 raised for melanoma research! You may be wondering why Rachel took on such a task, and how she came to be so passionate about sun protection. As it turns out, Rachel is a melanoma survivor herself, and has been gracious enough to share her story with us. So, without further ado…
How did you discover you had Melanoma? What type or stage did you have?
It’s a bit of a convoluted story and complicated by the fact that I was pregnant. The short answer is that I discovered my melanoma during a self-exam. It was located (ironically) in a pretty sensitive area that never sees sun, so was not in an area of the body that I would typically examine. Earlier that year, however, I’d had my annual exam with my gynecologist, who had noticed some dark freckles in that general area during her exam and suggested keeping an eye on them. A few months later, in my first trimester, I re-examined those freckles, since I’d read that skin lesions can change during pregnancy. When I looked, I saw that in addition to the original freckles (which hadn’t changed), there was a new mole – larger and darker. It was different and suspicious enough to raise a red flag in my head, so I made an appointment with a dermatologist to have it evaluated.
I was fortunate that the melanoma was detected and excised as a Stage 1a melanoma. I often think about how differently things could have turned out if my gynecologist had never suggested monitoring that area of the body or if I hadn’t acted on instinct when I noticed the new lesion.
What was the primary cancer treatment facility involved in your care? What have your treatments been like?
I am so fortunate to live about 5 miles away from MD Anderson Cancer Center in Houston, so when my dermatologist called to notify me that the initial biopsy indicated melanoma, there was no question in my mind as to where I would go, especially because of the added complexity of my pregnancy. MD Anderson has one of the largest, if not the largest, melanoma centers in the world, and I was doubly blessed to have been treated by someone who I truly think may just be the best physician in the world. He performed a wide-margin excision early in my second trimester, and simultaneously removed some regional lymph nodes in a sentinel node biopsy. When pathology showed that the margins were negative and that the sentinel node biopsies were negative, it was determined that I didn’t need any further treatment. I have returned to MD Anderson twice a year for checkups, and also see my dermatologist twice a year – I’m covering all my bases!
What organizations have been the most helpful to you and your family?
MD Anderson tops the list, of course, not just because of its top shelf level of care, but also because of its wide array of patient social support and educational programs. I’ve also used the resources of AIM at Melanoma and the Melanoma Research Foundation to further educate myself about the disease and to meet other survivors or individuals who have been impacted by the disease.
I often think about how differently things could have turned out if my gynecologist had never suggested monitoring that area of the body or if I hadn’t acted on instinct when I noticed the new lesion.
What has been your biggest challenge since your diagnosis?
Probably overcoming fear and a constant anxiety about recurrence. I was lucky to have needed no treatment beyond surgery, but even just that was enough to do a number on my mental state. It was easy for me, especially early on, to let the fear really grab hold of me, and it’s been something I’ve had to actively fight against. I’ve lost an embarrassing amount of sleep worrying about whether there’s still microscopic disease floating around in my system, or about new spots on my skin, or about my toddler’s potentially higher risk of development melanoma. In one sense, these are all good things to worry about if it means being extra cautious about sun protection or very diligent about skin exams, or if they motivate me to raise awareness in others. But it’s no fun (and it’s unhealthy!) to let anxiety control your life, so over time I’ve found ways to cope and channel some of that “worrying energy” into constructive and enjoyable activities.
And your greatest source of strength?
My family, and my husband in particular. They knew exactly the type of support to provide and how to use humor effectively to keep our spirits up. My diagnosis must have thrown them for a loop (to say the least), but you never would’ve known it based on how they responded. I know I can count on them for anything. My medical team comes in a close second. The immense degree of comfort and security that being in their excellent hands provide, even now, is really indescribable. With my family and my medical team in my corner, I figure I can face just about anything.
“Frankly I draw most of my inspiration from patients that I encounter on a regular basis, especially those who have had everything but the kitchen sink thrown at them and still manage to hold their heads high, and remain hopeful and upbeat. They’re the ones who inspire me – they and my son, whose very presence motivates me daily to be a better person.”
Do you believe tanning or sunbathing was a factor in your developing melanoma?
Indoor tanning wasn’t – I’ve never visited a tanning facility. I’m sure UV exposure did, though. I grew up in South Florida, where the sun is strong and always shining and where you were always outside. As a kid, I put sunscreen on when we went to the beach or if we knew we’d spend hours on the water, but that was about it. We had our physical education classes outside, sat outside for school lunch, played outside, hung out with friends by the pool, etc, and don’t remember wearing sunscreen, hats, or sunglasses for any of those activities – it just wasn’t something we thought about. Being tan just seemed to go with the territory if you lived in South Florida. Of course we know better now, and as I grew up, I became a much more conscientious user of sun protection (and at this point am just plain obsessive about it), but I’m sure the UV exposure I got as a kid was a factor in my developing melanoma.
How has your melanoma diagnosis changed your life?
There are the obvious ways it’s changed my day-to-day living – I’m so much more cautious about UV exposure now than I ever was, both for myself and for family members. I’m kind of the sun police in our house, much to my two-year-old son’s dismay. More profoundly, though, I think my experience with melanoma has made me a more altruistic person. I don’t think I was a selfish person before my diagnosis, but like most people, I was naturally inwardly-focused. It was easy to get caught up in the affairs of my own life – office stress, professional advancement, financial issues, etc – without stopping to think that there re a lot of people who have much bigger struggles. When the one thing that I always took for granted – good health – was suddenly put in jeopardy, and then was given back to me, I was immensely grateful. I was grateful to my family and friends who provided me with the best type of emotional support I could’ve asked for. I was grateful to my medical team for caring for (and caring about) me the way they did. And I was grateful for the strangers who told me, “I’ve been there, too, and you’ll get through this.” That gratitude kind of translated into wanting to provide the type of support and kindness to others that I had received. So I spend a lot of time volunteering now with cancer patients and their families, and helping to raise awareness of melanoma. And it’s been, by far, the most fulfilling and meaningful thing I’ve ever done, apart from being a mother.
Is there an inspirational quote, song, or book that inspires you that you would like to share with our readers?
There isn’t, really (though I can always count on Sara Bareilles’ Brave to put a boost in my step when I need one!). Frankly, I draw most of my inspiration from patients that I encounter on a regular basis, especially those who have had everything but the kitchen sink thrown at them and still manage to hold their heads high, and remain hopeful and upbeat. They’re the ones who inspire me – they and my son, whose very presence motivates me daily to be a better person.
What advice would you give someone who thinks skin cancer won’t happen to them?
Cancer hospitals are filled with patients who never thought cancer would happen to them, Especially young people, where the incidence of melanoma has risen so dramatically. But unlike many cancers, the greatest hope for melanoma is that it’s largely preventable. We *know* that reducing UV exposure reduces one’s chance of developing melanoma or other skin cancers. And the preventive steps a person can take to reduce that risk really aren’t that burdensome. Make sunscreen a habit. Wear your sunglasses. Don’t use indoor tanning facilities. Stay out of the sun during peak hours. This stuff doesn’t require a whole lot of sacrifice. And even if it did, it’s a lot less burdensome than developing melanoma.
Websites that have helpful to me:
AIM at Melanoma
MD Anderson’s Anderson Network
Melanoma Research Foundation