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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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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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Diagnosed at 25, Building a New Life in the Sun

Renee Burch Coolibar Melanoma Survivor

By Renee Burch

Note: Each May, Coolibar highlights melanoma survivors to call awareness to the dangers of melanoma. Here, Renee tells her story.

I used to think skin cancer was something that happened after decades of excessive tanning (not to young, otherwise healthy 25-year-olds) or to those living in sun-laden states (not in places like the perpetually-rainy Northwest).

Unfortunately, in March of 2013 I was diagnosed with malignant melanoma on my left thigh. And I quickly learned that, like most other young adults, what I thought I knew about the dangers of the sun and skin cancer was way off.

About Melanoma

Unlike other types of cancer, a la pink ribbons and saving the ta-tas, most people know very little about skin cancer. And they seem to know the least about the most deadly type of skin cancer: melanoma. Even more concerning is the fact that melanoma is the second most common cancer in young adults – and the number of yearly diagnoses is increasing, particularly in young women.

Part of what makes melanoma so deadly (and different from other types of skin cancer) is that it can quickly spread, which is why yearly screenings for every person, young and old, are necessary for prevention and early diagnosis.Renee Burch - Coolibar

The Diagnosis

Let me tell you, it has not been easy – my life was turned upside down the day I found out I had malignant melanoma at the age of 25.

I remember being very confused. I was unsure what it really meant. I didn’t realize right away that having melanoma was going to be the basis for rebuilding my routines – from hiking, athletic events and boating, to walking the dog, looking forward to traveling and starting a family. And, it took me a while to figure out how I was going to continue to do all these things while being “safe” in the sun.

For a while I tried to justify why I got the disease and other people I knew who were my age did not. “Back in the day” I always kept a healthy tan (turns out, it wasn’t healthy after all!), but I didn’t burn often, so I figured I was lucky to tan easily, and didn’t worry much about skin damage.

I shelled out extra money for the tanning beds I was told were the best “because they didn’t have the bad UV,” or because artificial tanning was beneficial to increasing vitamin D absorption.

My parents vaguely warned me about the dangers of overexposure to the sun, but never had any type of skin cancer. So, I lived life under the veil of belief that skin cancer wouldn’t affect me. My uncle had Stage IV skin cancer more than 20 years ago. I figured if he had it, removed it and has never had a reoccurrence, that’s how it worked: get skin cancer, get it removed, and move on.

I spent many months feverishly researching online, reading books, talking to other survivors, and testing a myriad of sunscreens (a trial-and-error that often left me covered in a ghostly white sheen). I completely switched my skin products, certain foods and supplements — everything in my daily life was impacted by melanoma in one way or another.

Renee Burch - Coolibar Melanoma Survivor

I found it difficult to decipher how to lead a normal life versus how to lead a normal life with melanoma. I struggled with the fact that the damage I had previously done was irrevocable. Right now, I have a one in 10 risk of developing malignant melanoma again. If I don’t take care of myself I could be a one in five, or a one in three. But the best I’ll be is a one in 10 risk.

And, I could not possibly spend life holed up indoors, or wearing thick and bulky, dark-colored, long-sleeve clothing on sunny summer days.

After months of angst, I realized I had to stop worrying about tomorrow’s challenges, and take charge. I was only 25. I want to travel, I want to have kids one day, and it was unrealistic that this disease was going to stop me from getting outside and enjoying day-to-day activities. I was determined: melanoma would not control my life. I was going to control it.

A New Life in the Sun

Thankfully, after recently celebrating my one-year melanoma free anniversary (a really big accomplishment for me!), I find myself achieving peace of mind with my diagnosis. I am continuously learning how to navigate life in the sun, without hampering my previously active and outdoors lifestyle.

I have vowed never to purposely seek out a tan – whether in the summer sun or in a tanning salon bed – and I am an advocate to my family and friends about practicing “safe sun”. Perhaps most importantly, I seek shade whenever possible and limit my sun exposure, particularly during peak hours between 10 am and 4 pm (even in the winter or on overcast days).Renee Burch - wears Coolibar

Without UPF clothing, I know my path to a healthy balance would have been much more difficult. I have sun protective clothing for nearly every scenario. In fact, I have a special dresser drawer designated specifically to it! I have UPF 50+ baseball caps for hiking and biking, sun hats for summer boating and leisure, beach cover-ups, running leggings, swim skirts, and a variety of other pants and shirts for whatever activities life throws my way.

I am a die-hard loyalist to my favorite brands of sunscreen (and let me tell you, physical sunscreen that isn’t pasty white sure is hard to come by). I seek out the shade, but when life happens and sun exposure is unavoidable, I know I am “safe” because of my go-to sunscreens and sun protective gear.

I continue to advocate and show others by my example the ways in which it is possible to practice safe sun: apply SPF of at least 30 and reapply regularly, and fake a glow that is actually healthy. (Believe me, self-tanners have come a long way since the days of streaky orange hand prints!) I wear my scar with pride. It’s a 3-inch scar on my thigh. People see that and say: “Wow that looks serious, what happened?” I tell them: “It’s from melanoma, and that is serious, but this scar could be worse – it could be on a more delicate area of the body, like the face.” That comes as a shock to most people.

If you do nothing else, see your dermatologist once a year. With my diagnosis, I visit mine every three months. But if you notice any changes in your moles, even freckles, get them checked out immediately!

Melanoma is a lifelong battle. One that is not, nor ever will be, easy. But I am fortunate to have caught mine early, to have supportive family and friends, and to have access to an increasing range of sunscreens and sun protective clothing.

I also feel optimistic that one day skin cancer will be as well-known as other cancers. With the support of Coolibar and other skin cancer advocates, I imagine a world where melanoma 5Ks and fundraisers, mobile mole-checks and UPF clothing are commonplace.

 

Renee Burch is a native of Seattle, Washington, and serves as an example of youth overcoming fear. Renee has created clear messages about melanoma, including the misperceptions about its seriousness, the dangers of indoor tanning and the necessity to reach people while they’re young about ways to prevent it. Renee is a proponent of dressing “cute and sporty,” and considers Coolibar a tried-and-true sole resource. She owns swim leggings, sun hats, half-zip shirts, jackets and sun hats, and more.

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