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Guest Post: A Call to Action from a Skin Cancer Survivor

Megan Ramey

NOTE: This post by Megan Ramey first appeared July 29 on Cancer Candor, a blog from Chris Hanson, President, American Cancer Society Cancer Action Network (ACS CAN). It appeared on the same day that the US Surgeon General released a call to action to prevent skin cancer in which he called the disease a major public health problem. “I wanted impress upon my readers why it is so important that our nation has an action plan for dealing with this devastating cancer by sharing Megan’s powerful story,” Mr. Hanson said.

My name is Megan Ramey and I was diagnosed with stage III melanoma in 2010, just weeks before my 21st birthday. With blonde hair, blue eyes and fair skin I am the walking definition of someone who should take extra precautions when it comes to UV exposure. Four years post diagnosis I look back on the choices I made and feel a large amount of regret for not being cautious enough. Melanoma is a unique cancer in that most cases directly results from our behavior. We can choose to protect ourselves in the sun and we can choose to stay away from tanning beds. I admit I did not take the risks seriously.

Growing up in Minnesota my family and I cherished our beautiful summers.  Whether we were at the lake or by my family pool we were outside from sun up to sun down. I used sunscreen here and there but not nearly enough to prevent several painful sunburns over the years. When I reached high school, I began using tanning beds before school dances, vacations and figure skating competitions. I thought that tanning beds were a safer way to obtain a tan. In college, going to the tanning salon was a common activity amongst my friends. Being tan was considered attractive.  Everyone was doing it. When you are young, you don’t think about the consequences of your actions and how they can impact your future. Had I been better educated about skin cancer (specifically melanoma) and taken the warnings seriously, my life could very well be entirely different from what is today.

When I was first diagnosed with melanoma, the summer between my junior and senior year of college became a whirlwind of scans, surgeries, oncology visits and one month of high dose immune building chemotherapy (interferon). Luckily all scans since my initial diagnosis have come back NED (or no evidence of disease), meaning I have no active cancer cells to worry about at the moment. Melanoma is tricky. Even if you are lucky enough to be labeled NED, it could reoccur at any moment. Knowing this, I made a choice to complete two years of low dose interferon in hopes that the medication will continue to help my immune system ward off active melanoma cells. Currently, I live my life in 6 month increments never knowing when the next scan will show trouble. A recurrence of melanoma is never far from my mind, and one of my biggest fears. My life at 25 is unlike anything that I could have imagined.

Melanoma awareness is an important part of my life. I am part of a local non-profit group called Melanoma Awareness Minnesota. This group is active in the community, participating in health fairs, expos and presenting to local high school students the dangers of melanoma. I recently had the opportunity to work with the ACS CAN here in Minnesota to pass the tanning legislation prohibiting minors from using commercial tanning beds. I enjoy sharing my story with anyone who will listen. When it comes to melanoma, education is key! Knowledge saves lives. The CDC and Surgeon General released today a call to action on skin cancer. Their support and assistance sends a strong message to the general public about just how dangerous and prevalent skin cancer can be. The numbers are staggering; millions of people every year are being diagnosed with melanoma. Something needs to change and I think this call to action is going to be a significant step in the right direction!

Megan Ramey is a courageous ACS CAN volunteer from Minnesota. At age 21, after several years of indoor tanning, Megan was diagnosed with melanoma, the deadliest form of skin cancer. Megan bravely shares her story with teens with the hope that they will avoid indoor tanning salons and protect their skin from ultraviolet (UV) exposure. 

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Staying Positive, Staying Aggressive

Tim Fater - Coolibar

Coolibar wraps up our official Melanoma Survivor Series with Tim Fater, a Rhode Island native whose sense of adventure has never wavered (we suspect it’s actually gotten stronger) following his diagnosis and treatment. Melanoma Month is almost over, but we’ll share additional stories throughout the year. Tell us yours!

Tim Fater noticed the first sign of melanoma in December of 2003. It wasn’t ominous; just an unusual freckle on his right forearm. Tim was 19 then, a junior at Fairfield University in Connecticut. He was also preparing for a semester abroad in Australia.

His mother, a nurse, urged him to get the freckle checked out before the trip. A biopsy was performed and a follow-up phone call told him the results were benign.

“I went to Australia,” Tim says now, “and burned for six months.”

The Adventure Begins

Following his graduation in 2005, Tim took off on another adventure. “I was doing the classic backpack trip across Europe,” he says. “While sitting on the train, I noticed the hints of a subtle re-growth emerging from the scar on my forearm where that initial excision had taken place. When I got back to the States, I immediately scheduled an appointment with a dermatologist to have the growth examined.”

Tim noticed that more doctors were involved this time, and that they were talking a lot more than usual. “I could tell by the way this was being treated that thiTim Fater - Melanoma Foundation New Englands was something serious, although no one wanted to admit it until we knew for certain,” Tim says. Finally the news came back: malignant melanoma. In fact, it had been all along.

Then it was a whirlwind: shock, fear, confusion. “It’s just really hard,” Tim says. “Especially for your parents, to see the fear on their faces.”

Looking back, Tim believes the disease was pretty certainly enabled by sun exposure during his childhood in Newport, Rhode Island; he was “always outside…whether it was sailing, surfing, golfing or working at an outdoor bar on the beach.”

This annual summer routine rarely included sunscreen, or anyone advising sun safety.

He and his family immediately transferred from Newport to the Dana Farber Cancer Institute in Boston, Massachusetts. “I remember one of my first meetings with the dermatologist very clearly,” Tim says. “The dermatologist that day informed me that a patient in my situation, with the recurrence, depth of the disease and the amount of time that had elapsed, had a five- year survival rate of 50 percent.” This was consistent with a Stage IIIB melanoma diagnosis.

The resulting surgery and skin grafting claimed most of Tim’s right forearm, along with the lymph nodes in his right armpit. This was followed by interferon treatments – an initial five weeks of intravenous deliveries and plenty of cold-sweat discomfort – “they call it shake and bake,” Tim says – followed by 11 months of self-administered injections.

Aggressive, Yet Positive

Here is what else Tim remembers: “I committed myself to a positive outlook; I taught myself to disregard such negative news which I knew could be lurking around the corner at any time. At that point everything was one day at a time.”

In considering this battle, though, one shouldn’t confuse being positive with being passive. Tim says that from the start he had decided to be aggressive in treating the disease; at such a young age, he was determined to navigate what is always a significant disturbance in one’s life and live as close to normal as possible.

That has included educating himself, as well as a great deal of educating others about melanoma. People share the initial whirlwind: what is it? Where did it come from? When people ask how he “got” melanoma, Tim says he tells them: it is one-third sun; one-third genes; and one-third “nobody really knows.”

Still, he says, “this might be the most frustrating part of the whole experience – the fact that skin cancer is, for the most part, very preventable.”

Today Tim Fater is a CPA and works as a Senior Staff Accountant at Harvard Kennedy School of Government. He is married; he is an avid skier and a photographer. He is active in several melanoma-related causes. He has also spoken about melanoma at schools throughout New England.

Tim has remained aggressive through all of the doctor’s appointments, skin checks, scans and follow-ups that come with a melanoma diagnosis. There has been no sign of the disease since the fall of 2005.

He’s also remained positive.

“People get caught up with all the little things, and now after fighting melanoma you have more to fall back on,” Tim says. “You know: don’t worry about the small stuff.”

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Minnesota Becomes Eighth State to Ban Indoor Tanning for Teens

MN State Capitol - teen tanning ban

The months-long debate over teen tanning in Minnesota ended on May 23 when Governor Mark Dayton signed HF2402 into law. Effective August 1, 2014:

– No one under the age of 18 may use a commercial indoor tanning facility in Minnesota.

– All tanning facilities must prominently display a sign to that effect.

– Tanning facility owners/operators who violate the law are subject to a misdemeanor penalty as determined by a judge.

The American Academy of Dermatology Association commended the approval of the bill in Consumer Affairs, pointing out that “dermatologists contend the risk for developing melanoma increases by 59% in people who use indoor tanning devices, and the risks increase with each subsequent use.”

In March, Coolibar (based in Minneapolis, MN) visited the Minnesota State Capitol in St. Paul for a day of lobbying on behalf of the bill then known as the Minnesota Skin Cancer Prevention Act (SF 1901). This effort was in conjunction with the American Cancer Society – Cancer Action Network.

Here is an updated list of US states that either prohibit indoor tanning or are considering it:

  • Louisiana – just passed a law banning the use of tanning beds by anyone under 18
  • Pennsylvania – Just passed a law prohibiting tanning bed use by anyone under 16
  • Indiana – Just passed a law banning the use of tanning beds for those 16 & under
  • Nebraska – Prohibits tanning bed use by anyone under 16
  • Washington – Bans the use of tanning beds for anyone under 18
  • California – Bans tanning bed use for anyone under 18
  • Illinois – Bans tanning bed use for anyone under 18
  • Nevada – Bans tanning bed use for anyone under 18
  • Texas – Bans tanning bed use for anyone under 18
  • Oregon – Bans tanning bed use for anyone under 18
  • Connecticut – Bans tanning bed use for those under 17
  • New Jersey – Bans tanning bed use for those under 17
  • Vermont – Bans tanning bed use for those under 17
  • Wisconsin – Bans tanning bed use for those under 16
  • Hawaii – Bill recently passed in state legislature would prohibit tanning bed use by anyone under 18
  • Missouri – Law would prohibit tanning bed use by anyone under 17

About 15 other US states have some form of restriction, such as a parental consent requirement, for teens using indoor tanning equipment.

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Beyond Scared: A Spirited Mom Fights Back

Georgina Kerstin Thrill Ride - Coolibar Melanoma Survivor Series

As Melanoma Awareness Month continues, so does the Coolibar Melanoma Survivor Series. This week: Georgina Kerstin of Naperville, Illinois.

Georgina Kerstin first felt the itch on her right calf in late spring, 2006. The source was a mole just below the knee. At the time, she was a busy mother of two – maybe a little too busy, a “doer” mom with a lively spark that made her ambitions slightly bigger than her calendar. She did not get to the doctor for a biopsy until July.

“When the call came and I heard the words, ‘you have melanoma,’ I didn’t know what life had in store for me,” she says. “Until you hear those words, you don’t understand. My doctor proceeded to tell me she already scheduled an appointment with the ‘melanoma doc’ in Chicago.

“I was beyond scared.”

The first surgery was scheduled at the beginning of August. Georgina was diagnosed with early Stage III melanoma; microscopic metastasis was found in her sentinel lymph node. Two weeks after the first surgery came another, a right thigh dissection that removed 13 more lymph nodes.

“By the grace of God, all of those lymph nodes were clean,” Georgina says.

A Tough Decision

The doctor told her that her only option was to undergo high-dose interferon treatments for one year. Melanoma survivors Georgina Kerstin and familyknow that this treatment tends to me tough on the body, But for Georgina, it would afford a seven percent better chance against recurrence.

“That is not a large number to be sick while on treatment for one year,” Georgina says today. “I thought, okay, I can handle this, but this is a year.  Do I do this? Do I not do this? What if I don’t do it and the melanoma comes back? I’m gonna kick myself. What if I don’t do this and I end up dying?”

These were just the surface thoughts. The kids were 18 months and four and a half years old. Georgina’s job as a mother had just begun. Her schedule was very busy and active as a stay-at-home mom. Her husband struggled with the diagnosis as well – he had trouble with Georgina being sick at all. It was, to understate it greatly, a very difficult time.

The final choice: no interferon. “I just refused to let it beat me,” Georgina says. “This is my game, and I will win. You have an 18-month-old and a four-year-old and you have no other choice.”

A New Lifestyle

Instead, Georgina revamped her life – backward and forward. “This whole thing taught me how to be more in tune with my body,” she says. “I look back and go, ‘yeah, I had two young kids, I was run down, I was sleep deprived.’ And that’s how the melanoma had its way with my body. Because I was not taking care of myself.”

Yoga was “the best decision ever,” she says, to remain healthy in mind, body and spirit. She’s also lost 30 pounds, and kept it off.

The biggest change: her attitude about life and people. “I don’t have a filter anymore,” Georgina says. “I’ve learned about not having a problem with, if there’s a negative person in my life, to just cut them out. I am honest. I say the truth because I don’t have time for anything else.

“I am the bouncer from hell. This is my party, and this is my body, and melanoma is not welcome.”

Spokesperson for Sun Safety

True to form, Georgina pulls very few punches about melanoma and the rest of the world. “You can blame the media because of what they’re portraying – what we’re supposed to look like,” she says, “even though a lot of them get their spray tans. People say, ‘I have to get a tan, I have to fit a certain mold.’ And those of us who have had this battle, we’ve learned our lesson. Because in the ‘80s all I did was lay out and fry myself. And here I am.

“And I guess because of my life experience with the melanoma I’m like ‘whatever.’ I just do my own thing. I just want to have a nice peaceful life. I want to have balance and raise my kids to be good citizens. I want to live my life and enjoy it to the fullest.”

Thrill Ride - Melanoma Survivor Georgina KerstinGeorgina says her long-term goal is to educate friends, family and community on sun safety, and raise funds for research to further treatment options for melanoma patients. “I want to use my experience to show people how the sun rays are dangerous and melanoma is preventable with simple precautions,” she says. “I also have plans to have my own foundation someday, Mommies Against Melanoma, and would like to educate the children in our community on sun safety.

Georgina remains a spirited, busy mom – the spark is still there, but it’s balanced by a certain grace. Her children are nine and 12 years old now, and they are still her focus. She’s a volunteer at the local elementary school as the president of the Home and School Association.

She has also remained NED (no evidence of disease). In August, she will be eight years NED. “Until you hear those words I will still have anxiety,” she says. “You don’t count yourself eight years until it’s actually eight years. I don’t take anything for granted. I know what the disease is capable of doing.”

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Monopoly Man: A Survivor Lives On

Jerry Dalton - Cooibar Melanoma Survivor Series

Note: Throughout May, Coolibar highlights melanoma survivors to call awareness to the dangers of melanoma. This week: the terrifying, ongoing journey of Jerry Dalton.

We thought that we wouldn’t get to meet Jerry Dalton, the certified rescue diver. Or Dalton the outdoorsman, the avid fisherman, or the deceptively tough jokester who worked for the maximum-security George Beto Unit in the Texas prison system, the guy who “could always handle what was going on.”

But really, we did. We met Jerry Dalton: survivor.

And this tough jokester known as Monopoly Man (so named by prison inmates when his mustache grew back white and bushy like the character on the Parker Brothers game) is still very much alive.

In an early communication about his schedule he informed us that “I will be fishing. Or swimming, depends on my balance that day.” That turned out to be a reference to what can happen when you combine the effects of long-term melanoma treatment with the effects of standing in a small, tippy boat.

Nerve damage prevents Jerry from lifting his left arm above his head; “fortunately, I’m right handed,” he says. “It’s just not so fortunate when you fall.” He also reports that he is numb from his face all the way down into his chest. “So…just another thing. It’s a perfect place to get shot I guess.”

A Harrowing Journey

Dalton’s battle with melanoma began in September 1999, shortly after his doctor had removed a mole from his left ear. Jerry was driving to Laredo, Texas with Mary, a medical technologist who would soon be his wife (and who plays no small part in this story; she is still by his side today). “I hit my ear with my finger,” Jerry says. “And it bled and bled and it wouldn’t stop. My wife suggested I switch doctors.”Jerry and Mary Dalton 1

Day surgery seemed to correct the problem – “you couldn’t even tell (anything had happened) when it healed,” Jerry says – until the biopsy results returned.

“It came back melanoma,” said Dalton.

A doctor in Amarillo did not hesitate to refer Jerry to Anderson Cancer Center in Houston. There was further surgery there. This time, “they had cut from the top of my ear all the way to the bottom of my throat,” Jerry says, “and (they) removed 40 lymph nodes.”

The cancer appeared in three.

“I was scared,” Jerry says. “But I didn’t really understand it at that time.”

Then came the first of what would be 10 years of PET (positron emission tomography) scans, which create images to show the possible spread of cancer cells –  “At that point it was like ‘why aren’t I glowing now?’” says Jerry – and one year of grueling interferon treatments.

He remembers places, and events. His first transient ischemic attack (TIA, or mini-stroke. A second, more severe TIA in Amarillo, and the doctors recommending he stop the treatments (“I REFUSED!” Jerry says). The day, during his first three-month PET scan, that doctors discovered an aortic aneurysm.

“I thought: oh, brother,” says Jerry. “I beat cancer, and now I’m gonna die of an aneurysm.” Open heart surgery in 2011, during which he received a mechanical heart valve “and a warranty card to boot.”

There were years of moving around and dealing with dwindling finances. Jerry went on disability in 2007; the couple lived in Clinton, Missouri and Palestine, Texas. Jerry and Mary bought several rental properties, selling all but two before the housing crunch. Mary moved to Lufkin and lived in a travel trailer for a while before they purchased their current home there (which “needs help…more than I do,” Jerry says).

This is an important part of the story: during this long period, Jerry was often stuck indoors. Sometimes, due to either the medical event or the treatment, he was unable to eat or talk. The outdoorsman was now wondering about the most basic activities.

“Who’s gonna mow the lawn?” Jerry remembers asking himself. “If I couldn’t do that, I’d have gone nuts.”

Surviving – and Living, Too

This is Jerry Dalton today: he speaks in a husky tone (one vocal cord is paralyzed). His vision is impaired from the strokes. He has a mechanicalJerry Dalton 2 heart valve. He used to weigh 240 pounds; now it’s more like 175. He’s accident-prone; the other day a piece of 2×6 lumber “fell out of my hand,” he says. “Now I have half a black eye…even my doctors look forward to seeing new bruises.”

Jerry Dalton is also cancer-free, and has been since 2011. “The best time was when they said, ‘you don’t need any more treatments. You are free to go,’” says Jerry.

What is most amazing is that he tells this story with a lightness of spirit that lets you know you’re speaking with Jerry the melanoma survivor and Jerry the adventurous rescue diver all at once.

“The biggest challenge for me was just doing the things that I want to do,” he says. “I’m still able to drive and do things like that. But it was all so rough on my body that anything strenuous, especially climbing stairs, has gotten crazy. And the hardest part was dealing with all that.”

Talking helps. Jerry has written a book, as yet unpublished, about his experiences. He reaches out to anyone who will listen about the dangers of melanoma and ways he’s discovered to effectively deal with a diagnosis.

For him, that has been a long-term effort to strike a balance. The former highly active life in and around the water must blend into his more recent existence, which for quite a while has included being afraid to step outside.

“I was so worried at the time to go out in the sun…we had to do something,” Jerry says. “After going through all this stuff with melanoma, and me not being able to go outside, I was scared to death. One of our first things was researching (protective) clothing.”

This was several years ago now, but the clothing remains – Jerry is never without a full-featured Coolibar hat, such as the Ultra Sport Hat, and a Coolibar UPF 50+ shirt. But the fear is subsiding. Jerry credits Coolibar clothing with providing a new freedom, the ability to live and play outside again without worrying about the sun’s UV rays and a recurrence of melanoma.

Mary DaltonA word about Mary: “There is no way I could have done all this without her,” Jerry says. In his mind he goes back in time to a car ride in 1999, and the diagnosis that immediately followed, and all that lay ahead.

“I said, “well, I don’t expect you to deal with this; I’ll just go back to my family,’” Jerry says. “And she said, ‘I don’t think so.’”

In late April, Jerry participated in the Sealy Outdoors Big Bass Splash at Sam Rayburn Lake in the couple’s newly purchased (actually it’s 37 years old, and as yet has no sun canopy) bass boat. That was his first venture out into the sun and water in many, many years.

This is Jerry Dalton, true to form: “I fished Friday am, it was so rough & full of boats that made mine look like a baby boat. I fell Thursday evening while trying to sit on the upper seat. This hurt so much, that I did it again Friday. I was out-fished this year. (But) it won’t happen again!”

 

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Coolibar and PRI Celebrate 10 Years

Coolibar and Partnership Resources, Inc. (PRI) recently celebrated 10 years of doing business together! PRI forms partnerships with Twin Cities area businesses, arranging jobs for its more than 230 clients with developmental disabilities. These workers help Coolibar by sorting, steam cleaning and repackaging returned items. Between four and 10 PRI clients work at Coolibar daily.PRI group

The 10-year partnership was marked with a luncheon provided by PRI and held at the Coolibar St. Louis Park, MN headquarters. The event was featured this week in the local Sun Sailor newspaper, which you can read here.

Coolibar is proud of our 10 years with Partnership Resources, Inc!

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Not Pasty

Pasty. With one word, an instant emotional connection occurs. A word some degrade themselves with when spring comes and their skin is pale. According to Jen Adkins, mother and founder of Not Pasty, we’re not pasty. We’re simply the color of our skin. No more, no less. After a life-altering experience, Jen is now working to change people’s perceptions of what it is to be pasty – and feel beautiful with the skin you were given.

As a redhead with fair skin and many sunburns as a child, sun safety has always been important to me, especially now as the mom of two blond hair, fair boys. As a writer who focuses on skin care, I’ve always been a bit obsessive with sun protection. Most of my readers are interested in learning about wrinkle prevention and I love telling them that sunscreen is the #1 anti-aging product on the market. But recently, my need to stay on top of sun safety took on a whole new level.

Last year, my family of four grew by one with the addition of our amazing then 5-year-old daughter. It was love at first sight, literally. The very first night we were together, I noticed that there were quite a few little brown moles on her skin. Later at a checkup, her doctor decided they were probably clogged pores, but referred us to a dermatologist to be sure.

The dermatologist almost instantly told me she thought my daughter had skin cancer. Biopsies confirmed her thoughts. Those “clogged pores” turned out to be basal cell carcinomas and her body was full of them – hundreds, head to toe.

It’s quite life-changing to all of a sudden have a 5-year-old with skin cancer. Skin cancer is an adult cancer, or so I thought, but I was wrong. It took us some time to figure out how to do life with skin cancer and of course we’re still learning.

Imagine knowing that going out in the sun will increase the number of cancers tumors on your child’s body, yet also knowing that your child doesn’t care about that and just wants to be a normal child. It is a tough balance trying to come up with ways to allow her to be that normal child while taking on the adult responsibility of keeping her skin safe. Our sun safety habits as a family have taken top priority, not just for our daughter, but for all five of us.

Jen Adkins’ Family

In June of 2013, after living with skin cancer for over a year and writing about skin for more than five years, I launched a new website called Not Pasty. We chose the name Not Pasty as a jab at those who use the term “pasty” to degrade fair skin. Not Pasty is about sun safety, self-love and even a bit of beauty. It’s a place where women can go to learn about enjoying sun safely, share their stories of self-love and encourage others in their journey of self-acceptance.

Because I write about the skin for millions of readers and live with skin cancer in my household every day, switching the focus of general skin topics to sun safety was an easy step for me and I have a lot of knowledge to share. My goal at Not Pasty is to tell sun truths, not fads or myths. I always fall on the side of caution and am constantly in contact with top doctors and experts around the country when questions arise.

I want Not Pasty to be the place people go to learn and discuss sun safety – where people can learn facts and tips, share what sun protection products they are using and learn about new ones. And we love when women share their personal stories – we call them Real Stories – about how they walked through the hard and came out ahead.

Most importantly, I want to encourage women to see their natural skin color as unique and beautiful and come to realize how ridiculous it is to brown their skin in the sun in order to achieve some silly idea of media-pushed beauty.

I’d love to be a part of changing the way the world thinks about natural skin tones, and I’d love to have you be a part of it with us.

Jen Adkins
Not Pasty

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Melanoma Survivor Timna

During Skin Cancer Awareness Month, Coolibar invites skin cancer survivors to share their stories in their own words. Hope, determination and drive to educate others play a major role in these individuals’ lives. Skin cancer doesn’t discriminate, it can happen to anyone. Prevention and early detection can be life saving! We hope you share these stories with your friends, family and colleagues. Be SunAWARE. Read Timna’s story.

I have been asked by many people about my story as it relates to melanoma, a disease that has changed me from the moment I got the call with my first diagnosis.

Here it is, in brief, with pictures to help…

I was born a baby with fair skin.

I grew up with hippie parents in the late 60s and early 70s. We lived in New Mexico and California, spending a LOT of time outside, dressed in minimal clothing.

I spent my time with my mom in Pacific Palisades, my dad in Venice, and my grandmother (Nonnie) in Marina Del Ray…on the beach.

Sunscreen was not a thing then…at lease that I knew of. It was all about just being outside, in nature.

(I know, weird that hippies let their kids play with toy guns…but they did)

Fast forward (but NOT to forget the 20+ years of sun loving, laying out, skin burning, beach going, roof-top pool visiting, and much more)……

At 38, I was sitting on my bed, studying the bottom of my right foot. Yes, I can see the bottom of my feet. Maybe it’s the yoga, but really I think it’s just my body…because below you will see me, at age 4, eating my foot…..

So, yeah…I was inspecting my right foot and saw a TINY black speck. I actually thought it was a baby tick, and with my fabulous surgical skills, I proceeded to remove the “tick” with a cuticle clipper…GROSS, I know. It was done. The “tick” was out and life went on….until a few weeks later while catching another good look at my foot, I noticed this black speck was back. Somewhere in the back of my head I remembered hearing the words, “If you have a freckle on the bottom of your foot, it is not a good thing.” And I knew I needed to get to my dermatologist ASAP.

I got in as soon as I could, seeing a physicians assistant, who removed the dot and told me to have a good weekend.

Over a week later, a nurse called me. She starts talking to me….about melanoma…my oncologist (I DON’T HAVE AN ONCOLOGIST)…my appointment for blood work and chest x-rays at UNC…surgery…cancer center. I left my body at those words. And when I came back, I told the nurse she needed to stop talking because I was not hearing her, and that I needed to get a pen and paper to write all of this down. This is not real! It’s JUST SKIN! Why x-rays and surgery and new doctors, etc? I mean, it is just about skin, right?

It was then I quickly became an expert on all things melanoma. I knew that when my oncologist LOUDLY stated to me, “THIS IS SERIOUS!” that my life was changing fast and forever.

Fast forward (but NOT to forget the dermatology visits every 3 months with multiple biopsies, most of which coming back severely atypical and needing further excision, the anxiety, fear, post traumatic stress, obsession with checking my moles all day long, 3 months for the hole in my foot to close after the wide excision, and the incision in my groin to heal after the lymph node biopsy, and more fear, and more terror, and, and, and……….oh, and practicing safe sun in all ways)

Three years later (no, I didn’t reach the 5 year mark. so bummed!) I have my second melanoma. This one is on my right forearm, found at one of my regularly scheduled dermatology visits. Back to fear, back to crazy, back to wide excisions.

And then, a few months ago, I started seeing flashes of light in my left eye. So I decide to study my eye ball, something I had never done in the past (surprising!). And sure enough, I see THE TINIEST dark fleck on the white on my eye, and I sink into melanoma fear knowing that tomorrow I will be in my eye doctor’s office no matter how booked and busy she is.

My eye doctor tells me that what I had found were just a few pigmented cells. Well, after you have had melanoma, the words PIGMENTED CELLS don’t jive well, no matter how few there are. She tells me it’s nothing, but that if I want to see an eye tumor specialist because I’m “so anxious”, she would make the call. OF COURSE I WANT HER TO MAKE THE CALL!

After weeks of waiting to get in with the eye tumor guy, and after a FIVE (yes, FIVE) hour appointment of dilation, pictures, exams, different residents, I finally got to see THE specialist, who tells me this: “The reason you came in here today is actually fine, but right next to it is something called Primary Acquired Melanosis, and because of your history with melanoma, we are not going to wait and watch, we need to biopsy it and freeze around the area.”

Um…with shock having taken over, I blurted out, “ARE YOU KIDDING ME?” The thought of a portion of my eye ball being cut and frozen and…It’s all just too much. I break. I break down right there with this nice eye tumor specialist and his nurse. I just sob.

When I went for my 6 week post-op visit I was overflowing with joy to be given the green light on returning to contact lenses. Ready to run out of the office and home to my little, delicate, disk-shaped, polymer wonders that I have missed so much. I was told that I would need to be refitted in my left eye for lenses…because my eye is forever changed.

A new set of eyes? Hmm. Yeah, I can see that. A piece of eye taken out = shape changed forever. And it was then I realize that not only is my eye changed forever, but I am.

And so it is with these experiences, and this new life, that I hope to raise awareness and help to educate others about what might just be something they can hear about rather than experience it firsthand.

As the summer is fast approaching, I am now in planning mode for a 7 week trip to Europe (to include MANY beaches)!  Here is how I do this with melanoma on my mind…I gather up loads of sunscreens, hats, UPF clothing, parasols, etc…and GO.  You can check out my packing list on Respect the Rays!
Wherever you go, you can do it with sun safety in mind!  Whether it’s the pool, the park, the beach, an island, whatever, always practice safe sun!

-Timna
Founder of Respect the Rays

“Out of difficulties grow miracles.”
~Jean De La Bruyere

A special thank you to Jen Jones and Cynthia Hornig of Women You Should Know who introduced us to Timna and her inspirational story of survival.

 

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Success Stories Wellness Warriors

Only Skin Deep

Foundation for Ichthyosis & Related Skin Types® (FIRST) member Cynthia carries a message so full of hope, it transcends the label of ichthyosis—offering inspiration to anyone who is challenged with a physical difference. Ichthyosis is a family of genetic mutations of the skin characterized by dry, scaling skin that may be thickened or very thin, and most forms of the disorder are rare. Each year, more than 16,000 babies are born with some form of ichthyosis and it affects people of all ages, races, and gender. Cynthia’s belief: relationships, compassion, and her laugh are among the many things that define her. Not her skin. Read Cynthia’s story.

One of the challenges in learning to live with skin that is affected by lamellar ichthyosis has been to develop an understanding that I am not innately a flawed person. Because ichthyosis is so visible, it can feel like a brand of some deeper disorder. But it is not. It is simply a disorder of the skin and probably only a failure of an enzyme or two.

When I was born in 1950, lamellar ichthyosis was poorly understood. I endured many painful experiences. I was hospitalized for a month of treatment trials as an infant. I had all my hair cut off as a third grader to try a treatment on a nearly bare scalp. As a grade-schooler, I was kicked out of a public swimming pool while taking lessons with my neighborhood friends. As a teenager, a hair dresser with whom I had an appointment refused to cut my hair once she saw my scalp.

Nearly everywhere I went people asked “What’s wrong with you? What happened to you? Were you burned?” I remember well the sense of embarrassment and shame that I was different. I assumed that the something wrong with me was way more than skin deep.

Thankfully I was also around people who knew that there was much more to me and to life than my skin. My family, nuclear and extended, my teachers, and others loved me for the normal, complete person that I was and helped me put ichthyosis in its proper place in my life. My healing continued as I got married, had wonderful children, worked in and out of our home, pursued my hobbies and developed a relationship with God through Jesus Christ.

It was God who showed me it’s never too late to have your dreams come true when He brought me my first horse at age 52, satisfying a lifelong longing for a horse of my own. My husband and I cherish our relationships with each other, our sons and their beloveds, our friends, our horse and cats, and other animals we come in contact with. We enjoy physical activity and being out in nature. I also love to sing and to paint in watercolor.

I understand the courage it takes for anyone with a visible difference to leave the house and participate fully in life, and I admire them. A person is interesting when they engage wholeheartedly in activities and relationships that they value. Having a skin condition is irrelevant to most of that.

Recently I was talking with a surgeon a couple days before he was going to operate on my spine. I wanted to alert him to the condition of the skin on my back so he wouldn’t be surprised at the time of the surgery. I was pleased that without thinking too much I said, “The skin on my back is affected with lamellar ichthyosis. You won’t have to do anything special with it during surgery.” To me that’s different than saying “I have ichthyosis,” or “I was born with ichthyosis” or some other way of saying “I’m ashamed of my skin.”

So, it was a triumph, when without a sense of shame, I put ichthyosis in its place, as a condition of my skin. My sense of myself as a valuable person was intact. My interests, my relationships, my compassion, my laugh are among the many things that define me. My skin does not.

-Cynthia

The Foundation for Ichthyosis & Related Skin Types, Inc.® (FIRST) is invited as a guest blogger and does not endorse or serve as a product representative for Coolibar.

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Success Stories SunAWARE Wellness Warriors

Melanoma Survivor Tim

During Skin Cancer Awareness Month, Coolibar invites skin cancer survivors to share their stories with us in their own words. Hope, determination and drive to educate others play a major role in these individuals’ lives. Skin cancer doesn’t discriminate, it can happen to anyone. Prevention and early detection can be life saving! We hope you share these stories with your friends, family and colleagues. Be SunAWARE. Read Tim’s story.

Like the day my wife and I were married, and the days our children were born, Thursday, August 18, 2011 will forever be burned into my memory. We were on vacation in Maine. My wife, son and I were leaving to sneak in nine holes of golf before the day was over when I got the call from my doctor. He confirmed that the suspicious looking mole on my arm was melanoma. Melanoma, the deadliest form of skin cancer, was on the top of my right forearm. Wow. The prognosis was good, the melanoma was .62mm in depth (generally if the melanoma is thicker than 1mm it is more likely to have spread) and therefore was considered an “early stage” and would require an excision surgery to remove surrounding tissue to check for spreading. I was scheduled for this surgery just five days later and although the surgery showed that all of the melanoma was removed, the pathologist suggested another surgery to obtain the proper margins; 1 cm of clean tissue around the melanoma is required to be removed and be clear of cancerous cells for a pathologist to consider it a clean excision. A month later, I had another excision surgery and this time the margins were met. My doctors determined that with these successful surgeries, no further treatment would be necessary at the time.

The physical healing is progressing well; the mental and emotional healing will take a bit more time. A cancer diagnosis is a very scary. This disease can strike at any time, to anybody without prejudice. It can take your world and turn it upside down. Support of friends and family is critical.

I am currently scheduled for full-skin examinations every three months for the next three years. If I am fortunate enough to not have a re-occurrence of melanoma, then I will move to six month examinations and eventually annual examinations.

My diagnosis not only came as a shock to me, but because melanoma can be hereditary, my family was impacted. They scheduled skin exams since their risk was now elevated. As a result, my older brother recently had a procedure to successfully remove a squamous cell carcinoma, a non-lethal form of skin cancer but alarming just the same. With a new outlook on skin protection for my family and myself, I am very thankful for my early detection and now am focused on keeping us all sun safe. There is an acronym being used now concerning the prevention and detection of skin cancers, SunAWARE. A=avoid unprotected exposure to the sun, W=wear protective clothing and hats, A=apply broad-spectrum sunscreens year-round, R=routinely check for changes in your skin and E=educate yourself and family about sun protection.

I have been working on farms and in the construction industry since I was 13 years old. The days of my youth were as many others, careless and carefree. I was never a lay around in sun kind of person but kind of lived my life with the motto “no shoes, no shirt, no problem”. Always outdoors and rarely protected! Eight years ago, with the passing of my friends father from cancer, a group of friends and I signed up for the Pan Mass Challenge to raise money and awareness for the fight against cancer. This event, which is the most successful cancer fundraiser in the nation, was started by a gentleman named Billy Starr after losing his mother to melanoma back in 1980. It is this event that had brought so much good in my life. It became an annual tradition my whole family took part in. The event was most likely caused the damage to those skin cells on my arm. The top of your forearm is 100% exposed while riding a bike. I am on my bike hundreds of hours a year riding over 2000 miles in preparation and before 2010 was completely unprotected from the sun. I have included a picture with my family form the 2012 ride (pictured above) and for the record; I removed my Coolibar Full Zip Bike Jacket a mile from the finish so I could cross the finish line with my team jersey.

Now, as a 42-year-old father of two and an outdoor enthusiast with activities that take me through all 12 months of the year, the protection of my family and myself has become a daily occurrence. Our leading defense against the suns damaging rays is with UV protective clothing and sun protective lotions for the exposed skin. I am similar to most, once I received my diagnosis I enveloped myself with what melanoma is, every aspect of it’s being and mostly how to prevent a re-occurrence, or in my families case an occurrence! That is how I found Coolibar — my leading defense against re-occurrence. I cannot be found outdoors with out a piece of clothing with that distinct logo on it. My other line of defense is sun protection lotion and I have found another ally in that battle, the Environmental Working Group (EWG). The EWG is the nation’s leading environmental health research and advocacy organization. Their mission is to serve as a watchdog to see that Americans get straight facts, unfiltered and unspun, so we can make healthier choices and enjoy a cleaner environment. I research different products on this site for me and my children, and then can usually find those products on the Coolibar website.

As previously mentioned, my diagnosis has rippled through my family and friends. My brother successfully had squamous cell carcinoma removed and is currently on a yearly check up. My children’s pediatrician is on heightened alert to anything that might be remotely suspicious. Most of my friends have gone to a dermatologist for a skin check and have also increased their protection levels. I am not one to soap box, but when it comes to skin cancer awareness, I will stump all day. So many cancers are not preventable and although melanoma might fall into this category we can all greatly diminish our risk. It is becoming increasingly easier in this country to protect yourself, your friends and loved ones, so why wouldn’t we? Awareness over the last five years has significantly skyrocketed. In 2011 the FDA issued new requirements for over-the-counter sunscreens concerning their labeling with regard to their protection levels, what type of UV protection they offer, the terminology used like “sunblock” and “waterproof”. The ability to be protected is ever-present. My hope is that everyone absorbs as much information as they can and use it to protect themselves and their families.

This year I will be adding another acronym to my list, the ABCDE’s of skin cancer. This acronym is concerning moles on your skin and what to look for: Asymmetry (each of the mole’s halves should be identical. Is the mole flat or raised)
; Border (an irregular border is abnormal)
; Color (dark and/or multiple colors signify a potentially dangerous change)
; Diameter (if the mole is larger than a pencil eraser, it may need evaluation)
; Evolution (a sudden change in the mole can indicate a problem).

Tim

“I’m not a dreamer, and I’m not saying this will initiate any kind of definitive answer or cure to cancer, but I believe in miracles. I have to.” …. Terry Fox, October 1979, in a letter requesting support for his run

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