By Kate Trimarki
My journey begins the week of my 26th birthday. Birthdays are such a happy, memorable time, aren’t they? At least that had always been true for myself, and this was one I would truly remember for the rest of my life. This birthday week would be the point of impact for my story, because it is indeed when the bomb was dropped that would change the rest of my life. Up to this point in my life I was free-spirited, outgoing and driven but after this, things would be different forever.
Let’s rewind to my teenage years and my early twenties. Back then I loved tanning and being tan. It didn’t matter if I was laying on the beach, in a tanning bed or in the standup machine, I just wanted my skin to have some color. I have milky white skin, which I undoubtedly inherited from my Irish father, and call it a blessing, call it a curse or maybe even one of those cases where you want something you don’t have, but all I longed for was that sun kissed skin tone. In order for myself to obtain this, I had to follow a process which consisted of getting a real good sunburn and letting it fade until I ended up with just the right color. The sad truth is, what I was actually doing was arming all of these little land mines, “moles”, under my skin, and it would just be a matter of time before they decided to detonate.
Let’s jump to me being 24 and at an annual physical, still 2 years before impact. Physicals were never an issue for me because I always knew I’d get a clean bill of health. Somehow however, this physical was a bit different. During this visit, while my physician was listening to my lungs from my back, his focus turned to a mole sitting just below where had placed his stethoscope. Now, he had mentioned before that it may not be a bad idea to see a dermatologist due to all my freckles and moles, precautionary of course, but today his tone was different. He became insistent that I have this mole checked out immediately. I explained that mole had been there forever and my pediatrician always kept an eye on it. He then explained regardless of the past, it was irregular in shape and quite dark and needed to be checked. So in the interest of maintaining my clean bill of health, I appeased him by assuring him I would make an appointment with someone in his group ASAP. The truth is, I did nothing of the sort.
So we’re at the week of my 26th birthday and it’s been two years since my last physical, so I may as well get one out of the way. I’m not even thinking about the fib I told my physician last time, that I would have that mole checked out, but he was thinking about it. He had not forgotten and was in shock to learn I had done nothing about this mole. The physical quickly turned to “cancel whatever you have going on for the rest of the day” and he would make sure I was seen by a dermatologist in his group today. In my head, I couldn’t understand why he was overreacting like this. I just didn’t see why the sense of urgency, but decided to just go along with it knowing it would be a minute to have this thing removed and I would be on my way, and indeed that was the case. About 48 hours later, when I was asked to return to the dermatologist’s office due to the biopsy results, the reality of the matter still hadn’t kicked in. I went to the appointment alone, figuring this would be a quick visit, and after showing up, “you have malignant Melanoma Kate”, “you’re going to have to meet with an Oncologist and have surgery as soon as possible”. I simply replied, “Why can’t you just laser it off?” which I was then greeted with the response “obviously, you do not understand the severity of this.” He was right, I did not.
To say I was naive when it came to skin cancer was an understatement. I always associated it with the elderly or someone that looked like Magda from the movie There’s something about Mary. Regardless, this was happening to me, and my entire birthday week turned into one big blur to me. The only way to describe it was like if I was a famous actor on the press tour from hell. I was being rushed off from one place to the next, answering the same questions and giving the same answers. I was poked, prodded and studied from every angle. Everything felt so invasive however the surgery and partial lymph node biopsy did prove to be a success. Of course this was at the cost of a whole lot of pain and a huge reminder on my lower back of what I went through. The remainder of that year proved to be one of the most challenging I would ever live.
Adjusting to this new lifestyle of being constantly biopsied and having surgeries, all I really wanted was my life to go back to the way it was before my diagnosis. Until now, the focus of my biopsies and surgeries were all on my back, so I began having the mentality that I would treat my body like a paper doll. Focus on the front and just ignore the back, ultimately pretending that nothing ever happened. Then I had to have surgery due to squamous cell carcinoma on my breast and stomach. I received many stitches during that surgery and when I could finally shower, I remember catching a glimpse of my front in the mirror and it hit me like a ton of bricks. That was the first time I had felt an emotion, anger, and I was overcome by it. My body was no longer the paper doll, instead I saw a body that was quite broken and I did not like it. I began punching things and yelling, yet surprisingly, not a tear would fall. And with that anger, my life just took a downward spiral. My boyfriend and I had ended our relationship, I decided to just up and quit my corporate job, and I could not concentrate or focus on anything. I was separating from the person I once was, and people were noticing. It was my Oncologist that finally requested I see a cancer therapist. His recommendation and a dash of my parents telling me that they hadn’t seen me smile in so long was just the right mixture for me to agree to see someone.
The first few times going to therapy I let the therapist do most of the talking because I still really had nothing to say. It wasn’t until our fourth session that she pulled out my chart and read the notes that my Oncologist had written about me. He described me as the following:” Kate has made a decision to avoid in engaging emotional connections. She runs from situations and I am concerned that as a survivor of trauma that she has developed into PTSD”. The therapist then pulled out a book and said that she was going to read me a poem. The poem was about a day at the beach with friends. One of the friends decides to swim out by themselves in the ocean. The undertow and waves prove to be too much for him or her. He or she can see their friends on land. There is no lifeguard on duty, so in order to be saved, they would have to ask for the help of their friends. The person tries to swim and fights to get closer to the shore but ends up letting the ocean take them instead of calling out for help. The therapist looked up at me and says to me, “that person in the ocean, that person drowning, is you. You would rather drown then be saved by asking for help.” She said to me that I am running away from something that will eventually catch up to me. Through everything I had been through, I finally cracked and broke down crying. I actually began to weep and the sadness overwhelmed me. I did not realize how much I was alienating and distancing myself from my family and friends.
Months had passed and I continued therapy. I felt like my therapist was the mirror that was showing me the destructive path I had been taking. She explained that my impulsiveness, like quitting my job, was all about control. I could not control my skin cancer, but I did have control over the decisions that I made. I had so much regret, but I was trying to become a healthier person. I began to educate myself on Melanoma and all types of skin cancer. I was like a sponge and I just wanted to read everything and anything about this disease. I wanted to embrace it instead of running As better of a mental state I was in now, the one thing I was still missing was having someone I could relate with. It was great talking with my therapist but I needed someone who had been through what I had, someone who dealt with the same cancer I had. Enter Shonda Schilling. It was at this point I had found my Melanoma Survivor Soulmate.
Ironically, prior to my therapy, my mother had made mention of Shonda and her story, which had made headlines because of her exposure being married to Boston Red Sox Pitcher Curt Schilling. She was a Melanoma survivor but when my mother first mentioned her, I was in denial and not ready to hear anything about her. But one night out of curiosity, I went on the Shade Foundation website, which was founded by Shonda and her husband Curt, and I read Shonda’s story. I immediately felt compelled to reach out to her via the website. Within 24 hours, I received a response from her. It was surreal, like hearing from a long lost friend. After several email exchanges, she invited me and some of my family to be her guests at one of Curt’s baseball games at Fenway Park. Being from Massachusetts and from a family of diehard Sox fans, I was overjoyed by the invitation.
Meeting Shonda in person for the first time was like a revelation. I saw that you can truly be happy again even after a nightmare like Melanoma. I could see that Shonda was genuinely comfortable in her skin, whereas I wasn’t quite there yet. She was proof that you can love again and be loved, scars and all, and that you can have a career, a family, friends, laughter, smiles, and a beautiful life. For so long I thought I was being punished with this diagnosis that I deprived myself of all the good things life has to offer. Not only has Shonda inspired me in so many ways, she has become a role model and a friend whom I will always hold close to my heart.
In 2007, 6 years after my initial diagnosis, I have my happy ending. I found the love of my life and 9 years later, we have 3 beautiful girls, a five year old and twin 2 year olds. My journey still continues. I will always have dermatology appointments and biopsies once in a while but I have accepted that. I have also made it a personal mission to raise awareness for Melanoma. Yes, even I am still learning new things about Melanoma every day, I do try to put myself out there as much as possible and I was even honored to be part of OLAY’s Best Beautiful Campaign to help promote skin cancer awareness. Social media has also proven to be a huge part of raising awareness and serves as a vehicle for victim and survivor personal stories. I commend these people because it takes a strong person to share something so raw and private and that was always something I had great difficulty with.
Today, though, I too am like Shonda, happy and comfortable in my skin. My priorities in life may have changed and the meaning of what is “beautiful” has changed. I have grown in so many ways. As I conclude, I want to share two things that I have learned:
Everyone has scars, I just wear mine on the outside and AWARENESS IS BEAUTIFUL.
Written by: Kristi Donahue
My name is Kristi and 3 years ago I was diagnosed with stage 1a melanoma. I knew nothing about this disease at the time. I had a pretty big surgery on my neck to remove the tumor (mole), and have since healed physically. In the past three years, I have learned SO much about this sneaky, ruthless, and deadly disease.
However, I have come to the startling conclusion that there are very few people out there that know anything about melanoma, or in many cases are not even willing to learn. The lack of education and awareness out there, as well as our own personal vanity, is the number one reason that melanoma has taken over the driver’s seat as being the fastest growing cancer in the United States. The rate of melanoma in people under 30 is increasing faster than any other demographic group. Pediatric cases are also rapidly rising. While the incidence of many other cancers is on the decline, melanoma is increasing.
I am a barber in Ladera Ranch Ca. and since my diagnosis, I have made it my mission to make my station become a “platform ” for education. It’s covered with melanoma awareness and educational materials. I hand out sunscreen samples and business cards for local dermatologists. I also hand out books that I order regularly from the National Cancer Foundation. I have also ordered a lot of information and material from the Melanoma Research Foundation to hand out as well, using their cards as my business card ;). In my barber chair, I have helped to spot melanoma on two different customers. Through my Facebook page posts, I have had another person get checked and diagnosed with melanoma. My Facebook page is also 100% filled with awareness and education as I share stories of real people daily, both Angels and Warriors. I am dedicated to using Facebook as a vessel to reach as far as I can.
This brings me to my exciting new project that I just completed. It is so important to me to educate and make people aware EVERYWHERE I go and help them to learn about this horrific disease. Facebook and the barber shop are just not enough for me, and so I wanted to transform my car into a rolling Public Service Announcement. I wanted to make sure that EVERY inch of useable space on my car shares facts, helpful slogans, photos, and places where we are exposed to UV rays. For example, the baseball field (all outdoor sports), tanning bed, beach/pool, kids playing outside, and even driving. I have added the link to the AMAZING short PSA “Dear 16 year old me” as well as my FB link. I wanted it to be LOUD, impactful, and educational! I wanted people, no matter where I go, or park to see the word melanoma, a word that they probably have a grave misconception of, and want to know more. I want everyone that I pass by, or that passes me by, to take in any little bit of info, that they would NOT have known before. I want this disease to STOP.
We DESPERATELY need to SPREAD AWARENESS, so that this vicious beast gets a cure, and we stop losing these YOUNG beautiful people. I want to OPEN eyes that would not have even given the word melanoma a second thought. I am determined to use every single part of my life in raising awareness, and open eyes in every way that I can.
The feedback since I received my car back has left me speechless. Many friends want to do something similar to their cars. I have made connections just out and about with people who have lost loved ones to melanoma. I was on the freeway and had this woman look at me in shock (a look like “Holy Cow “) and then give me a huge thumbs-up. I also just recently went to a local recreational park and before I knew it, had a crowd of people standing around asking questions/taking pictures. It was truly an incredible 45 minutes. Just the kind of thing I hoped would happen.
This month, I will be joining a group of amazing families in Washington DC to speak on Capitol Hill at the Melanoma Research Foundation’s Advocacy Summit & Legislative Hill Day. I am so excited and cannot wait to go. I truly just cannot seem to get loud enough.
With each beautiful warrior that earns their Angel wings, my heartbreak fuels my fire and only makes me want to find new ways, or new people to educate. I believe in my heart that together we can “Drive” this beast into the ground!!
Written by: Danielle Paterson, Executive Director, David Cornfield Melanoma Fund
2015 started off with an amazing public health feat: Australia banned indoor tanning nation-wide. This made Australia the second country (after Brazil) to make indoor tanning illegal. Both countries should be applauded for taking this bold and impressive measure to protect their citizens from melanoma.
In recent years, efforts to decrease melanoma have increased around the world. Many countries and jurisdictions have banned indoor tanning for minors and enforced strict equipment regulations and health warnings. Numerous organizations and health authorities have launched high-profile prevention campaigns related to indoor and outdoor tanning. Many companies have started promoting sun-safe clothing. And in 2014, the U.S. Surgeon General published its significant and forceful ‘Call to action on skin cancer’.
This activity is reminiscent of the measures taken over the past few decades to curb the use of tobacco to reduce lung disease: prominent public health campaigns on the dangers of tobacco-use, health warnings on tobacco packaging, limiting youth access, and medical and political leadership via the U.S. Surgeon General’s influential reports on tobacco. Due to coordinated, committed political and financial investment to these and other measures, in many parts of the world, tobacco use has decreased and lung cancer incidence and death rates are dropping.
As Australia implemented a multi-sectoral approach to reduce tobacco use in the 1980’s, it also implemented a skin cancer reduction strategy to curb its troubling number of skin cancer cases and deaths. As a result, Australia is the first country in the world to see a decrease in skin cancer cases. This is an impressive feat considering Australia’s cherished beach culture! The Australian strategy included prominent public health campaigns, school-based sun safety programs and policies, curtailing access to (and now banning) indoor tanning, developing sun protective clothing technology, and building and promoting shade etc. Australia’s skin cancer reduction approach should serve as a model for how to turn the tide on skin cancer.
Around the world, high death rates from lung disease served as the impetus for many countries to commit to reduce tobacco use. Similarly, high skin cancer incidence and troubling death rates in Australia served as the motivation for concerted action on skin cancer.
Today in North America, although the death rate from skin cancer is not as high as that for lung cancer (lung cancer is the most common cause of cancer death), the incidence rate is significantly higher. (Skin cancer is the most common cancer in Canada, accounting for nearly the same number of new cancer cases as the four major cancers combined—lung, breast, colorectal and prostate. In the United States, skin cancer accounts for nearly half of all cancers). And, while the incidence and death rate for most cancers is decreasing, it is increasing for melanoma, the most lethal skin cancer.
We wonder what it would take to motivate North America to apply the lessons from tobacco control. Will we follow Australia’s lead to take real action on melanoma? Is the number of lives lost the only way to motivate a bold multi-sectoral approach? What about the opportunity to prevent the #1 cancer in North America? Or the responsibility to curb the number of melanoma cases before death rates rise further?
Is tanning the new tobacco?
By Anne Todgham, Assistant Professor of Animal Physiology, University of California Davis
For the past two years, I’ve been leading a research team in Antarctica as part of the United States Antarctic Program to understand the vulnerability of Antarctic fishes to future climate change. I’m specifically interested in understanding how ocean warming and ocean acidification (the absorption of CO2 by the ocean causes it to acidify) impacts the development and performance of young fishes.
Antarctic organisms have spent millions of years at stable, sub-zero conditions and have tuned their physiology to be able to survive in polar waters. Unfortunately, this tuning has resulted in them having a physiology that is very susceptible to warming and therefore scientists are concerned that polar species will not be able to tolerate future ocean conditions. This is worrisome given that Antarctic fishes in particular are largely only found in the Antarctic and are very important food for seals and penguins.
The feeling of arriving in Antarctica for the first time never goes away – utter amazement at the vast expanse of whiteness and how lucky you are to be able see such remarkable beauty in its simplicity. Now don’t get me wrong, Mother Nature can be fierce in Antarctica and there are many times we wonder how the early explorers, like those on the Shackleton and Scott expeditions, were able to cope without the extreme cold weather (ECW) gear of today. Unlike the fishes I study, we are clearly not tuned to survive Antarctica’s climate! Being prepared when you go outside is the key to success on this harsh continent.
Before we deploy from the US and head to the bottom of the world, we get a thorough set of medical exams to ensure we are in top shape. Part of the paperwork is a reminder about the importance of sun safety. As the sun’s harmful rays are reflected from the snow, the US Antarctic Program takes sun safety very seriously insisting all program participants wear sunscreen and sunglasses. We are advised to bring multiple pairs of high quality UV protective sunglasses from a list of recommended brands (in the Antarctic you always need back up of important items since you just can’t go out and buy more on a moment’s notice). When we arrive in Christchurch, New Zealand for our final briefings and clothing issue, we are given two bags of ECW gear. This gear includes an extremely warm red Canada Goose coat (“Big Red”), snow boots, snow pants, long underwear, fleece, hats, mitts and a pair of UV protective goggles.
My research team conducts fieldwork outside most days, in good weather and bad, and there isn’t a day that I don’t apply sunscreen throughout the day and wear my sunglasses. Remembering sunscreen is not hard to forget at McMurdo Station, the largest of the US research stations in Antarctica. There are sunscreen stations at the doors of most main buildings of the station. At the entrance to the galley, there is a hand washing station for when you go in and a sunscreen station for when you leave.
Our three-month field season is about to end. It is starting to feel a little like “summer” in Antarctica. Temperatures get above freezing during the day and McMurdo is turning into McMudhole, as the snow begins to melt and the ground thaws. Time to return north for the holidays, just in time for a sun-safe winter in North America!
Written by: Danielle Paterson, Executive Director, DCMF
Two recent influential reports, The Canadian Cancer Statistics and the U.S. Surgeon General’s Call to Action to Prevent Skin Cancer (see our last blog on its significance), provide valuable information about skin cancer statistics and sun protection habits in North America.
Skin cancer is the number one cancer in North America. In Canada, the number of skin cancer cases rivals the number of new cancer cases of the four major cancer combined (lung, breast, colorectal and prostate). And while the incidence of most cancers is decreasing, the incidence of melanoma, the most serious and often fatal form of skin cancer, is increasing, tripling in the U.S. since 1973.
The statistics confirm that melanoma does not discriminate, affecting males and females of all ages and races. They also reveal that although both women and men are at serious risk of melanoma, there is reason to be particularly concerned about men. Why?
- Melanoma is more common in men than women;
- Melanoma incidence has increased faster for men than women;
- The death rate from melanoma is notably higher for men than women; and
- The death rate for melanoma has increased more quickly for men than for women.
To understand the causes behind these statistics, we need to examine the sun exposure, sun protection and self-care behaviors of men diagnosed with melanoma.
- Sun exposure: We know that intermittent or recreational exposure to the sun is more likely to lead to melanoma than daily sun exposure. Many men enjoy recreational exposure to the sun and often do so without adequate sun protection.
- Sun protection: As a result of fashion traditions and social conventions, men are unlikely to wear appropriate clothing outdoors (e.g., often no hat or only a baseball cap, which does not provide sufficient protection for the ears and neck, and no shirt, which leaves the torso exposed—the most common location for melanoma on men). Men are also less likely to use sunscreen than women because it is deemed ‘feminine’.
- Self-care: We know that early detection by checking your skin regularly and seeking medical attention early is critical to successful treatment of melanoma. If caught early, melanoma is very treatable; if detected late, melanoma is often fatal. The increased death rate among men is directly attributed to the fact that men of all skin types are less likely than women to seek regular, early medical attention.
These behaviours are particularly dangerous for men with fair skin, hair and eyes, who are at greater risk for melanoma (not surprisingly, non-Hispanic white men have the highest incidence of melanoma in the U.S). They are also dangerous for men with dark skin who often underestimate their risk of melanoma, which leads to insufficient sun protection and late diagnosis. This results in high death rates; in the U.S., survival from melanoma is poorest for black men.
This leaves men with a terrible combination of risk factors: frequent recreational or intermittent exposure to the sun, poor sun protection behaviours, and delayed medical care. Simply put, men are not adequately protecting or checking their skin, and when a problem is discovered, they seek help too late.
At DCMF, we know that behind every statistic is a real person. Our men, our sons, brothers, friends, husbands, fathers, grandfathers are dying from what is, for the great majority of cases, a preventable disease in part because of ingrained social norms and traditions such as fashion and so called ‘manly’ behaviours. This is very troubling.
For information on melanoma and how to protect your skin visit http://dcmf.ca/melanoma
For tools to help you check your skin visit http://dcmf.ca/tools
Written by: Danielle Paterson, Executive Director, DCMF
We are deep in the heart of what’s been an exceptionally long, icy and cold winter in Toronto. Although I’ve loved a few amazing days of sledding, skating and playing in the snow with my children, I could have done without the extreme cold and icy conditions. In fact, I’m counting the days until we head down to Florida for a week of outdoor fun in the sun.
One of the reasons I love winter get-aways with my family is that they remind me of the sunny destination vacations I was fortunate to experience when I was growing up. I fondly remember endless days of swimming, sailing, playing tennis, building castles and snorkeling. These trips were a time to slow down and enjoy a bit of summer weather in the middle of our long Canadian winter, a time to read a great novel and an opportunity to spend quality time with my family.
Recently, however, a flip side of the wonderful nostalgia I have for these sunny winter trips is the realization that I experienced repeated extreme exposure to the sun throughout my childhood and adolescence. Yearning to warm up, eager to enjoy all aspects of the outdoors, I spent all day outside in the very hot and intense Florida or Caribbean sun.
Those were the 1970’s and 1980’s when applying ‘sun tan oil’ (I can still vividly remember that strong coconut smell) and ‘working on your tan’ were normal and expected behaviors. Although I tanned once in awhile, I was never one to ‘work on my tan’, choosing instead to enjoy a swim, run or snorkel. But the truth of the matter is that even though I wasn’t ‘tanning’, I probably spent the same amount of time in the sun as the die-hard tanners, receiving equal exposure and therefore equal skin damage.
I used sunscreen occasionally but it was usually only SPF 4 or 7, and wearing a great bathing suit was much more important than covering up with hats and clothing. As a result, over the years, I had several severe blistering sunburns, including painful burned feet and even a burned scalp after an unwise decision to get my hair braided.
I cringe when I think about the amount of repeated extreme exposure I received from the sun on these beloved winter getaways. I cringe because I know the following sobering facts about sun exposure and melanoma:
- Melanoma is a common and serious form of skin cancer that can be fatal.
- The primary cause of melanoma is exposure to ultraviolet (UV) rays from the sun or indoor tanning equipment
- The risk of melanoma is increased when you are exposed to intense intermittent sun such as that experienced on a sunny vacation
- Light-coloured hair, eyes and skin (like mine) increase the risk of developing melanoma
- The more severe blistering sunburns received as a child, the higher your risk of melanoma.
Today, I notice that more North Americans are taking steps to protect their skin during sunny vacations. That said, however, I continue to notice people actively tanning and people, including babies who are particularly sensitive to the sun, completely exposed in the blazing sun for extended periods of time.
As incidence of other cancers is starting to decline, melanoma’s incidence is actually increasing. In Canada in 2013, there were an estimated 6000 new cases and 1050 deaths. Particularly concerning is that melanoma is the second most common cancer among adults aged 15-29.
Fortunately, we have the power to change these statistics because remarkably, melanoma is preventable. After working in the area of cancer for many years, this fact continues to amaze and inspire me.
Since sun/UV exposure is the primary cause of melanoma, the best way to reduce your risk of melanoma is to protect your skin from the sun on your sunny vacation. Simply put, if you are in the sun, you need to protect every part of your body:
- Protect your head with a hat
- Protect your skin with long clothing
- Protect your exposed skin with a broad-spectrum sunscreen with an SPF of 30 or more and reapply often
- Protect your eyes with sun glasses
- Protect your whole body under the shade of trees or a large umbrella and reduce your time in the sun between 11am and 4pm when UV rays are most powerful
We feel the toll of melanoma more than most at the David Cornfield Melanoma Fund. Eight years ago, David Cornfield, a beloved son, brother, father and friend, died of melanoma at the age of 32. We continue to feel his loss and we miss him dearly. We are deeply committed to honouring David’s wish to educate people that melanoma is preventable and we are eager to empower people to protect their skin.
I cannot change the amount of sun damage I received on my cherished childhood winter getaways. I can, however, protect my skin now to reduce further damage and to be a role model to my children, family and friends. I can also actively protect my children to make sure they look back on their winter getaways without cringing.
If you have a chance to travel south this winter, enjoy your trip, create some memories, but please remember to actively protect your skin!