A Conference with the American Academy of Dermatology

If you recall last year (2013), the American Academy of Dermatology ran a promotion to raise skin cancer awareness.  This was all well and good, but they encouraged everyone to wear orange on Melanoma Monday.  Ouch…that upset a lot of melanoma warriors and worriers who have embraced black as the color (note that “melanoma” literally translates to “black tumor”).  The melanoma community was outraged and the focus of the month unfortunately became a war of colors rather than a campaign for awareness. 

 



Orange is the New Pink...not quite the same

The AAD eventually stated that they would promise to involve the melanoma community when planning the 2014 campaign.  I think many of us, including me, thought that this would never happen.

We were wrong.

Many of us who voiced our concerns were contacted by the AAD to attend an online conference call to learn of the Academy’s plans for 2014.  Those in attendance were me, Brad Gill, Rev. Carol, Catherine Poole, Chelsea Pr…er…Dawson, Rich McDonald, Robin Lawrence, Samantha Guild, Susan Hayes, Timna Understein, and Donna Regen…along with many others who simply listened in on the phone.  Melanie Tolley (Senior Director of Integrated Communications) and Missy Lundberg (Associate Director or Public Relations and Public Education) did the talking, and they had great things to share.

Once again, the AAD will run their SPOT Skin Cancer campaign in May (Melanoma and Skin Cancer Awareness) which will include reminders how to protect, detect and live with regards to skin cancer.  Their key message will be on learning how to spot skin cancer.  Their website at SpotSkinCancer.org will provide information on how to perform a self skin exam, how to find free skin screenings in your area, provide a mile map to map your body, and teach the ABCDEs of melanoma.  Wait…melanoma? Yes!  That’s the exciting news…

May 5 will be Melanoma Monday...with the emphasis on the color black!  (No orange…except for the cool UV detecting bracelets that might be available).  And not only will they recognize melanoma on May 5, they plan to devote that entire week on melanoma awareness!  Although all attendees were in their own houses across the country, I could almost hear a collective cheer.  They will be flooding Twitter, Facebook and Pinterest with posts and links about melanoma awareness.  Make sure you stay tunes for more when the time comes!

This was an incredible experience!  Not only is the AAD, a major player in skin cancer (we can’t forget “regular” skin cancer…it can be serious, too) about to launch a major melanoma awareness campaign, their acknowledgement of this needs proves that we as a grassroots campaign are being heard!  Every person listed above has a presence online, whether in a blog, or Facebook or whatever.  Me personally, I just sit in my bonus room late at night in my PJs (sorry for the image) looking for important links regarding melanoma and sun safety.  Occasionally I share my personal thoughts in a blog (like now).  But I’ve been heard.  The Hotel Melanoma has been heard.  People are Respecting the Rays.  The Melanoma Prayer Center is rising.  We are making a difference…because you, the readers, are sharing our posts, links and thoughts.  Thank YOU.

And thank you to the American Academy of Dermatology.  Together, we WILL beat melanoma!

Mr. BITNP Goes to Raleigh

Me, Timna and Anne

On June 13, I was fortunate to join with Anne Bowman (AIM at Melanoma), Carol Taylor (Melanoma Prayer Center), and Timna Understein (Respects the Rays) to assist the North Carolina Dermatology Association (NCDA) with a day of amateur lobbying at the NC Legislative Building.  Our goal was to lobby in support of prohibiting minors from using tanning facilities and remind folks in the building  that the dermatologists were giving free skin screenings down the hallway.  I would give a play-by-play of the morning, but that would take days to recall…so much happened in such a short time, it felt like a week.  So I’ll simply share a few observations and thoughts of the day:

• First of all, the three aforementioned ladies were incredible.  I loved meeting folks that I’ve “met” on Facebook…this being my second meeting with Carol.  I think the group gelled very well as if we had been friends for years.  Each person had their own personality which meshed well to form a great group personality.  I look forward to seeing and working with each of these folks again in the future.

• The bill to ban tanning for minors has yet to be officially introduced.  The NC Legislators have “short” and “long” sessions…this year being a short session.  (I suspect it has something to do with having time to prepare for re-election campaigns).  The actual bill is to be introduced next year…our experience this past Wednesday was a dry-run rehersal for next year.  We developed some great ideas for improvements next year.

• It’s been said to “Speak softly and carry a big stick.”  But I believe the philosophy of all the lobbyists in the building was “Speak quickly and carry a smart phone.”  These guys must have had a self-guiding app on their phone because I’m not sure I saw one look up from the screen even while they were negotiating the maze-like hallways.

• There is a lot of politicking in politics.  So many people had their own agendas and causes to push…there were literally lines at some of the representatives’ offices.  But the open door policy was quite interesting to see.  No real “appointments” were noted…just a quick “is the Senator in?” inquiry before talking.

• That “talking” was pretty much limited to a hand shake, a verbal introduction, and a quick, “we’re here to represent the melanoma community and hope you’ll consider supporting a bill to ban tans in 2013…plus please take advantage of the free skin screening down the hall.”

• I found that most of the legislators were out in session or in meetings…so I approached all of the assistants.  I know they’re the ones that run the day-to-day workings…and most were quite receptive and had already arranged to get their screening.  I’m sure they ended up reminding their specific legislator when they returned to the office.

• The group, individually or together, spoke with one of the most conservative legislators, and to one of the most liberal.  Both stated that they’d support a tanning ban bill.  That has to bode well for chances of passage next year.

• Politicians have to walk a fine line…and in this day and age, unemployment is a hot topic.  So lobbying to shut down an industry, no matter how sleazy, is a tricky stance.  This is why the proposed ban would be for minors only.  Also, the flyers we handed out stated that banning the beds would not be bad for business as teens would migrate their dollars to safer tanning alternatives such as spray tanning.  Offering to allow tanning salons to “remain lucrative” didn’t set well with all of us…but I suppose it is all part of the political process.  (Unfortunately, the ABC News report on the dangers of spray tanning came out the same morning as we were pitching its use.  Oops.  More on that in my next blog.) 

• Politics can challenge your own beliefs.  I met with several representatives, but a couple of them are guys I would never vote for due to our differing opinions.  However, they each support a tanning ban.  Again, the bill won’t be introduced until next session, after the election.  So, do I compromise my general political philosophies and vote to keep these guaranteed “yes” votes in, or do I vote for their opponents, thus risking losing that supporting vote?  It’s a dilemma and I don’t envy the politicians one bit for having to make similar decisions all day.

The day was exciting, eye-opening, and informative.  But most importantly, I learned that I can’t wait to work with each of these ladies again!  It was a true pleasure and honor.

A Month I Never Expected

As Skin Cancer and Melanoma Awareness Month approached, I anticipated increased traffic on Facebook, some token under-informed skin cancer stories on local TV news, and an extra article or two in the paper about using sunscreen.  Honestly, that’s about all I recall from previous years (admittedly being only “aware” just last year).  Wow, did this month turn out different and better than expected!  Here are just a few highlights:

·       The most unlikely of people pushed Melanoma Awareness Month from the Health Page to the Front Page…a tanner!  Patricia Krentcil, aka “Tan Mom,” became the talk of the water cooler…not because of the accusations that she took her daughter into a tanning booth, but because of her uber-tanning appearance.  To quote the spoof on Saturday Night Live, she “looks like a baseball glove.”  Yes, Tan Mom created discussions on the safety of tanning beds across the country and on every media venue imaginable.  Nearly every story on TV or in the paper about Ms. Krentcil also had the subtext that “this is Melanoma Awareness Month.”  Thank you Tan Mom for being our anti-hero!

·       Because of the interest in Tan Mom, several melanoma warriors were interviewed in both print and television.  Some of these are posted on a new website called “Faces Of Melanoma.”  Check under “Making a Difference.”  Also, Chelsea Price not only appeared via Skype on the Dr. Drew show, Headlines News did an entire piece on her and her blog.  Great, great stuff!

·       Many folks participated in several walks and events across the country.  I was unable to attend any myself, but am anxiously awaiting the AIM for Melanoma walk in Charlotte, NC in November.  (Feel free to sponsor me by clicking the link in the upper left of this blog page).

·       NBC’s Today Show did a piece on tanning beds which showcased an advocate for the tanning industry.  While the NBC medical expert slammed the tanning biz, the opposing gentleman’s smarminess left a bad taste.  And all this was reported as a model fried in a tanning bed in the background!  So many people were angered by the Today Show…but they redeemed themselves with an excellent expose on how tanning salons are not following the New Jersey law regarding parental consent for minors.  Half of the salons investigated showed that they let in 15 year old girls with no problem.  This pretty much confirmed the sleazy or uninformed nature of the tanning industry as reported a couple months earlier in a Senate Report.

·       Coach Bill Cowher announced his involvement with a new campaign called Melanoma Exposed.  What many people may not realize is that men are at a higher risk for developing melanoma than women.  Approximately 5,800 men die annually compared to 3,000 women.  This is not to say we need to stop warning young women against tanning…but Coach’s involvement may help get stubborn men to the dermatologist earlier to have their skin checked.

·       Sadly, at the statistical rate of one person dying of melanoma each hour, we probably lost over 700 warriors to melanoma this month.  This hit close to home as a couple of folks who have “Liked” my Facebook page and commented on this blog passed away this month.  They will be missed.

·       And yet miracles happen as so many of us stayed glued to the Facebook as Steve Hock went under the knife for his grueling 8 hour surgery to have tumors removed from his brain.  There was a real risk that he could have come out in a vegetative state…but latest photos shows him being alert and miraculously well.  His success may not ease the pain of those lost, but it certainly offers hope to those still fighting.

·       On a somewhat selfish note, my blog post “RealPeople of Melanoma” surpassed the 1,800 page view mark this month.   That is six times as many hits as my next most-read post.  Chelsea told me that a producer at CNN found that post linked from her blog…and the producer loved it.  But my thrill in the readership is not about the numbers at all…it’s about knowing that the word is getting out there.  It seems to get read by a few people every day despite having been written back in January.  Don’t be surprised if a Part 2 comes out in the next few months.

·       Finally, the word IS getting out.  The one “enemy” to our cause is the tanning industry.  It’s evident that our grassroots effort is starting to pay off because those who support tanning beds are starting to leave comments in not only my blog, but others’.  If someone or something is not a threat, you ignore it.  Well, we’re no longer being ignored, which means we must be a threat to the industry.  This is exciting to know!

We had an incredible month!  So many people are now aware…and this is just the beginning!

Thank You Mela-Momma!

Note:  I wrote this piece just prior to learning about Chelsea Price’s interview on Headline News today.  Make no mistake, she’s a true “celebrity of melanoma!”

If I were a conspiracy theorist, I would think that someone within the Skin Cancer Foundation created the ultimate public relations coup.  Out of the blue, an unwitting New Jersey tanning addict put skin cancer awareness and anti-tanning campaigns right on page one!  And all of this happened on the first day of Skin Cancer Awareness Month…assuring at least a few days of headline-grabbing stories and discussions.

Patricia Krentcil…otherwise known as the Tan Mom (I prefer Mela-Momma) allegedly took her 6 year old daughter to a tanning salon.  It was reported that the young girl (who is light-skinned with red hair!) was sun burnt and the implication was that the child actually used a tanning bed with her mother.  Both parents deny the allegations, stating that their daughter got too much sun while simply playing outside.  I suppose it’s for the authorities to sort out.

If indeed Mela-Momma is found guilty, not only does she have to answer to her actions, the tanning salon has to explain why they violated New Jersey law which prohibits children under 14 from using tanning devices.  If it’s found that the child never entered a booth or bed, but was in the same room as her mother as she tanned, the establishment still has to answer for their actions.  And if it’s found that the child sat in the lobby as Mela-Momma sat in the rotisserie, the salon is off the hook…sort of.  When a bar serves a patron too many drinks, they’re significantly and legally to blame for allowing the drinker to drive away.  Is a tanning salon guilty of the same if they let an obvious over-tanner continue to bathe in UV radiation?  This offers further confirmation of the Senate findings of the tanning industry’s sleazy actions.

But let’s get back to the anti-hero of our cause.   There have been countless articles and opinion pieces about Mela-Momma.  One good article from MSNBC offers insight to the real damage to skin.  And last night, Dr. Drew devoted half of his talk show to Ms. Krentcil and offered impromptu diagnosis of her addictive behavior and apparent body dysmorphic disorder.  He had another tanner…an attractive girl named Michelle (I think), that seemed to showcase the “real” tanner.  But at the same time, she exhibited her own seemingly addictive comments and really didn’t shed an approving light on tanning at all.  (And of course the more attractive Ms. Chelsea Price also appeared via Skype and made a great positive pitch for sun safety!)

I even had a conversation with my extreme-tanner co-worker today…asking her not to tan as much as Mela-Momma.  She promised that she wouldn’t (the jury is still out on that).

Tanning has taken a big hit.  Mela-Momma’s shoe-polished flesh will be long connected to the act of tanning, and it’ll turn people away.  At the same time, this occurs just as Skin Cancer/Melanoma Awareness Month kicks into gear.

An extreme tanner exposed in May, thus ensuring extended coverage of tanning dangers and skin cancer.  I couldn’t have planned it any better myself!

"But at least I know the risk I am taking"

One tends to get snippy when a privilege is taken away.  I recall back when I was a sophomore in college and West Virginia changed their legal drinking age from 18 to 21.  I was 19 at the time and was fortunate enough to ride a grandfather clause that allowed me to continue drinking (never heavily mind you, but socially).  Still, the freshmen behind me were banned.  Well, at least at public bars…not so much at private parties.  But I digress.  The point is, those younger than me were really peeved that they had to sneak around to drink.

There’s a lot of snippiness going around at high schools and colleges lately due to increased pressure to stop tanning.  For many kids, tanning for prom, spring break or a summer “base tan” is a rite of passage.  The thought that government might take away their “right” to tan is upsetting and downright socialist!  At least that’s what they think.

A recent blog commented that the male brain doesn’t reach maturity until the mid-twenties.  Anotherblog cited a book that mentions that the brain may not finish growing until after the teenage years.  What this means is that no matter the information piled upon teens, they just won’t comprehend the data unless they want to.  They will merely get snippy at being denied the “right” to tan and not understand the underlying reason for the ban.

Today I ran across an editorial…from an editor of a high school newspaper called the “The Sailor’s Log.”  The editorial piece was called, “To Tan Or Not To Tan: Editor ConsidersPre-Spring Break Options.”  Erinn Taylor openly admits that two weeks prior to her annual spring vacation to Florida, she visits a tanning booth three or four times per week.  She admits that this is probably not the smartest practice and goes on to quote various skin cancer facts:

“According to mayoclinic.com, being exposed to ultraviolet (UV) radiation (the type of light used in a tanning bed) is dangerous. It does not matter whether the rays come from a tanning bed or the natural sunlight.”

“According to health.harvard.edu, exposure to UV radiation is linked to skin cancer and premature aging.”

“According to livestrong.org, people who have used tanning beds before the age of 30 have increased their risk of melanoma by 75 percent.”

Erinn goes on to state that her mother had a basal cell carcinoma removed this past summer. 

“It looked like a scab, and the dermatologist cut it off, not a problem.”

Unfortunately her mother’s simple procedure to remove the BCC probably reinforced the classic “just cut it out” opinion that so many people have regarding skin cancer.  Still, her mother has now turned against tanning beds and is quite skeptical of Erinn’s use of indoor tanning.

The editorial goes on to state, “Simply looking at the facts, the decision seems obvious, but I have to look at my individual situation as well.”

Erinn decided to get her tan again before her Florida trip.  Her final comment?  “But at least I know the risk I am taking.”

No she doesn’t.  She THINKS she does…but she does not.  Despite the research she’s done and despite her mom’s insistence that she not tan, she’s going to go ahead and do it.    

This goes to support that there MUST be a ban enacted for those under 18.  Teens cannot comprehend the risk they’re truly taking.  Their parents are unable to stop them.  And like the freshmen back in my college days who found a way to get the beer they wanted, today’s teens will find a way past “parental consent” laws for tanning.

As stated by another, the only real way to stop people from tanning on a volunteer basis is to change the general public’s perception of what’s attractive.  This would not be an easy task.  Until then, ban the tanning beds.  Period.

Black is the New Pink: The First Year

It’s been one year since I published the first blog post from “Black is the New Pink.”  I could never have imagined when I first started what an impact this blog would have on my life …and I hope it’s had a positive impact on others. 

In celebration, I’d like to turn on the “way back” machine and add some additional comments and insights to my top ten read posts (spoken in Casey Kasem’s voice)…

#10 – What’s the UV Index Where YOU Live?

I have tried to write a mix of strictly informative pieces within the opinion pieces.  This one was such a writing, and I consider it one of my favorites for a couple reasons.  First, it brings to light the story behind the EPA’s UV Index and it showcases some cool graphs and a neat gadget.  Most importantly, it inspired me to write my local TV news station and ask why they didn’t post the UV Index in their weather forecast?  Within a few weeks, this very station started to show the UV Index!  I can’t be sure that my email had anything to do with it, but if it did, it goes to show how one voice CAN make a difference.  I encourage you all to share your voice.

#9 – Linked to Pink?

There was a study done that states breast cancer and melanoma could have a genetic predisposition for one another.   I wrote this a day or so before October…breast cancer awareness month when the whole world turns pink.  Here’s a lot of pink envy in the melanoma world (and other cancer worlds as well) so I found it interesting that melanoma world might have a stronger connection than we thought to the pinkies.  Melanoma awareness could use a boost…and riding the coattails of the pink wave might help our cause.  Of course this was prior to the recent backlash of the Susan G. Komen scandal.  

Another reason I enjoyed this bog post was that I attached my first (and only) attempt at a video message, which was silent.  Since “the Artist,” also a silent movie, won the Academy Award for Best Picture, I’d like to think I set a new trend.

#8 – Occupy Tanning, Inc.

A tanning company called Tropi Tan posted the benefits of healthy tanning in the Q&A section of their website.  They refuted the “falsehoods” of why tanning is supposedly bad for you.  This pissed off a lot of melanoma warriors and soon, many molemates started to flood Tropi Tan’s Facebook page.  Eventually, the comments were deleted, but witnessing the swarm of individuals that gathered upon this website was amazing to watch.  As I stated above, one voice can make a difference.  This event showed how many voices can have an even greater impact!

#7 – What is Black is the New Pink?

The inaugural posting.  I stated “I hope to add to this blog on a regular basis, sharing Melanoma related links, hints and local events in the Raleigh, NC area and perhaps nationwide.  And in May, which is Melanoma Awareness Month, I hope to share a daily factoid to help others become more aware.”  It seems my mission has turned from local to nationwide and global…and my daily factoids have continued way beyond the one month.

#6 – Talking About D Facts

This was written around the time that Dr. Oz made his famous “rethinking tanning beds” gaff.  The greatest “benefits” attributed to tanning beds was Vitamin D absorption.  I did a little reading and shared the facts of Vitamin D, along with some personal commentary.  I didn’t expect this post to have a large readership, but it far exceeded my expectations.  I’m so glad that these facts were shared and that they inspired discussion.

#5 – “People Need to Know…”

My blog site was initially and continues to be written in honor of my brother.  I’ve written personal stories and accounts of my relationship with Jeff and his struggles with life and death with melanoma.  These are obviously my favorite pieces as they are written from deep within my heart.  I try to be careful to keep an optimistic look in these writings as I don’t want to focus so much on his death.  Instead, I try to focus on his thoughts of saving others from this dreaded disease.  In this piece, I share details of the last weekend I spent with Jeff.  During one of our last conversations, we coined the phrase “black is the new pink” and he insisted that people needed to know about melanoma.  I probably should have titled this, “People NEED to know” as that was the inflection used.  I’m so glad this piece has been so well-read, because people are starting to know.

#4 – Uncontrollable Risk Factors

This is another post of which I was surprised at the growing readership.  My work schedule in 2012 has been off the charts and I was having serious blogger’s block.  After reading all the recent tanning news and posts online, I wanted to remind people that it’s not just tanning that leads to melanoma.  I found some good facts on the Melanoma Education Foundation page and was shocked by what I saw…so I contacted MEF directly to receive clarification of these facts: 

·         Having two immediate family members (parent, child or sibling) having had melanoma gives you a 100% chance of getting melanoma yourself! 

·         Having many atypical moles and having one immediate family member having had melanoma also give you a 100% chance. 

I believe these facts shocked others as well.  I hope these shocking facts extend well beyond the melanoma community and enlighten those who need to know.

#3 – Eric’s Story

I wanted to share the story of Eric Sizemore.  I posted this a few weeks before his passing.  I thought the video series that he and his wife Jill put together was the most incredible testimony to melanoma’s evil rage.  As I state in the blog, their videos were real, raw, tender and difficult to watch.  I still find that this posting gets viewed, even today by people searching “Eric Sizemore” on Google.  I’m sure he’d be happy to know that he made a lasting impact on many.  Also, his wife Jill continues to campaign and has been working hard to get anti-tanning legislation passed in Ohio.

One sense of irony is that another blogger commented on this post.  Her name was Randi and I started to follow her own blog soon afterwards.  Sadly, she also passed a couple months ago.

#2 – Pale Skin is In…Thoughts of Tina

Here’s another blog about a melanoma warrior who has since passed.  Tina Sullivan was one of the first people to comment on my blog and Facebook pages.  She was a very inspiring woman and beautiful in many ways.  She touched an amazing array of people.  Her family also continues her campaign just as Eric’s family has done.

I am proud to have crossed paths with Eric and Tina, and to have had the privilege to share thoughts on their fight.

#1 – Real People of Melanoma

Far and away, this is the most read blog post I’ve written.  It has been read three times more than any other.  And I have to admit that I put more thought into this one than any other.  For that fact, I’m selfishly proud.  But I’m also proud in that the message has touched so many.

I have found each of the people presented here to be so very inspiring.  Eric and Tina are mentioned of course, as our others I’ve corresponded with such as Christina, Karen, and Chelsea.  I never met or communicated with Amanda before she passed, but I found her story incredibly touching. 

Truth be told, there are (sadly) many MANY more “real people of melanoma.”  I correspond with a few each day and reach out to many more through this blog and my Facebook page.  I have been SO inspired by those I’ve crossed virtual paths with and am very excited at the chance to meet many in November at the AIM for a Cure Walk in Charlotte.

I hope this posting wasn’t too self-absorbed.  I merely wanted to share a bit of the journey with you and THANK YOU for making Black is the New Pink an online success.  I hope there will one day be no need for such blogs…that melanoma will cease to exist.  But until that day comes, I plan to keep this campaign going!

The Earlier They Learn, The Less They'll Burn

A new study by the Memorial Sloan-Kettering Cancer Center in New York states that pre-adolescent kids (pre-teens to teens) are not regularly using sunscreen, despite the fact that many had suffered earlier sunburns.  It was noted that the kids (yes, kids) felt that they looked better with a tan.  In fact, some claimed that they looked healthier with a tan.

This has to change. 

There are many great skin cancer awareness PSAs and anti-tanning campaigns, but most seem to be aimed at teens and young adults (mostly women).  That’s not a bad thing at all, but I think this new study shows that education needs to happen earlier.  I’d personally like to see it start pre-pre-teen…beginning in early elementary school.  Or earlier from the parent to their child!  When a child is taught to look both ways before walking across a street, or not to talk to strangers, he should as routinely be taught about sun safety.  A child probably won’t understand skin cancer or wrinkly skin, but they might listen when one explains that the sun can provide bad sunburns.

My nine-year-old daughter asked me this past summer if the sun was bad.  She had seen my efforts regarding this blog site and the BITNP campaign and simply assumed that the sun must be bad.  I explained to her that the sun was life-giving and provided energy and warmth.  The sun is good!  “So why are you telling people to stay away from it?”  I tried to explain UV rays and got a blank stare.  Then I thought of an analogy.

“Think about water.  Is water good?”

“Yes…because you need to drink water and you can swim in water and the plants need water.  So yes, water is good!”

“But what happens if someone that doesn’t know how to swim goes into deep water?” 

She stared…thinking deeply.  “Well, I guess water is bad?”

“No…water is good, but you have to be careful around it.  If you aren’t careful, water can be trouble.”

“So…wearing sunscreen in the sun is kind of like wearing a life jacket in deep water?”

I couldn’t have worded it better myself.

I don’t know if my kids (both now 9 going on 18) will maintain daddy’s respect for the sun.  They’re entering pre-teens and already becoming a little rebellious.  But having taught them early in life, they have a fighting chance.  I would hope that they do not succumb to peer-pressure and that they stay away from tanning beds.  Better yet, I hope they become mini-advocates against tanning.  She’s in Girl Scouts now and has already asked me if there’s something she can do to help out BITNP within her troop.  Atta girl.

I’ve been working on a presentation for pre-teen classrooms…or Girl Scout troops.  It’s a work-in-progress and I hope to have at least a working draft in May when I plan to speak to the troop.  But for now, there are some great resources for educational material from the Melanoma Education Foundation and the Children’s Melanoma Prevention Foundation.  Check them out and try to spread the word to the kids in your life. 

The earlier they learn, the less they burn.  And yes, I just made that up.  :)

Real People of Melanoma

This post is meant to be read by those who think skin cancer is no big deal. 

"It can be cut out and then it’s gone."

"A tan is more important than worrying about simple skin cancer."

"I have to die of something, so it might as well be skin cancer."

Have you muttered any of these words when reading an article about the dangers of tanning?  Have you walked into a tanning salon, defiant of the literature received on skin cancer?  Well, feel free to continue doing so, but please take a few minutes to read this post. If you still have the urge to go tanning or avoid having that mole looked at...fine. 

What I want to do is introduce you to some real people.  I started to blog almost a year ago as a way to cope with my brother's death.  Yes, he died of melanoma (that's the nastiest skin cancer in case you didn't know)...and I promise not to make this a sappy read and bore you with his details.  But in the process of blogging and sharing my thoughts, I've come across some real people that have had real experiences with skin cancer.  These are not “models” or medical anomalies showcased as freak shows…these are real people facing different kinds of skin cancer every day. 

Christina has skin cancer on her face.  It's not any type of massively deforming tumor or obvious cancer other than a few spots on her face, but its real cancer nevertheless.  Really, it appears like it's just a condition on which one can treat with a topical cream.  And that's kind of what's Christina went through a few months ago.  She was required to apply a topical chemotherapy to her face for two weeks every year.  Yes, chemotherapy.  It's not the blood infusion type that conjures up the awful images of "real" cancer...just a simple skin application…one that peels away the face, quite literally.

She said in her blog that the pain was unreal...and at night when she slept (something she was unable to do most nights) her face literally stuck to her pillow.  It hurt to smile...it was excruciating when she yawned...it pained her to talk.  She's a teacher…so she had to teach through the pain.  Her face is mostly healed now, but the next year and round of chemotherapy will come only too soon for Christina.

Karen is a mother who noticed "an ugly freckle" on her leg.  See it here on her right calf?

Frankly, it looked like a simple mole seen on many people. She had a dermatologist look at it and discovered it was Stage 2 melanoma.  (Stage 4 is the worse).  She had the mole "simply cut out" successfully...here's what her "simple cut out" looked like right after the mole removal.

You see...when they "cut out" any skin cancer, they cut out a large area because skin cancer spreads.  It spreads FAST!  A small 3mm mole may result in a several inches cut and scar along one's leg, chest, neck or face.

Another real person is Chelsea, age 24.

She's had surgery to remove the cancer from their skin and lymph nodes, but has had to continue the fight because melanoma has a nasty habit of spreading...even when it’s thought that it’s been completely removed.  In fact, there’s as much as a 30% chance of recurrence of melanoma for those who had it before.  You can that here see that her neck and under her arm have been scarred...but she's also had to go through quite a few other procedures.

In short, it's not been a fun ride for Chelsea.  She’s doing pretty well now, she's had many days of being very sick and has had to spend a lot of time and money going to a cancer center in New York for her treatment.

Oh yeah, that's a good point...tanning sessions might be expensive, but it's nothing compared to the expense of having cancer.  We’re not talking hundreds, but thousands of dollars.  For Stage 4 melanoma patients, there’s one drug that costs $30,000 PER DOSE!  And if you think insurance will cover everything, you better think again.  Not only does each person here have to battle cancer each day, they have to battle insurance companies even more so.

Here's another lady named Tina.  I have no cancer photos of Tina...just this nice one with her and her daughter. 

Tina was doing pretty well, but then her melanoma returned, got nasty, and spread to her bladder.  She said it was a very painful experience...and it caused other complications.  Tina passed away a few months ago...leaving her daughter and husband to continue fighting the insurance companies.

I have one more lady to introduce you to...Amanda.  I admittedly haven't talked to this girl like I have the others, but her story is pretty powerful.  Here's her photo before she got skin cancer.

Here's her photo after the tumors invaded her face and body.

There’s really not much more I can add that the photos don’t already say.  You can watch this video to see more of her story.  Amanda died at age 31.

Skin cancer doesn't affect only pretty young women.  In fact, more guys suffer from the disease than women.  However, many guys just don't share their photos and thoughts as much as women do.  You know how guys are...tough as nails.  But Eric decided to share his entire battle on You Tube.

He discovered his cancer as a mole on his ankle...like so many others.  He fought for a long time, but the cancer just kept on coming.  It invaded his lungs, spine, brain and his entire body.  Now I apologize for the graphic nature of this next photo...but I wanted to show you a photo of Eric's leg...not long before he died.

Yes, that’s his leg.  His flesh was literally rotting away as his grapefruit-sized tumors penetrated his skin.  But believe it or not, Eric was "lucky" in that he became paralyzed from the chest down and couldn't feel this painful condition.

Again, these are REAL people...not rare medical subjects, but real people encountered online while I wrote my blog.  Each has his or her own story, battles and losses and some successes.  I wanted you to meet these people because even the best skin cancer Public Service Announcements convey pretty people that look normal.  They share their story of survival, but you really don’t get a good feel for the true pain they went through. 

Your chance of getting skin cancer is pretty high...about 1 in 5.  Admittedly, melanoma is the rarest form of skin cancer, so you have less chance of getting that...about 1 in 50.  But after you’ve seen these real people that have battled melanoma, it’s easy to see how one should do everything in their power to prevent it.

There are two main things to remember with regards to preventing melanoma.  First…avoid the UV rays.  It’s obviously impossible to avoid the sun completely, so wear sunscreen EVERY day…no matter the weather.  And do NOT use a tanning bed.  It’s concentrated UV rays and there’s absolutely nothing healthy about it.

Secondly, visit your dermatologist annually and check your skin yourself monthly, if not more often.  Early detection is key!  Get to know your skin and notice any changes.  If you see something suspicious, don’t wait the year…see your dermatologist now!

Wear sunscreen and get checked.  It’s that simple to avoid becoming one of the real people of melanoma.

Post Script:  I appreciate those who shared their photos for this blog post.  I believe I received permission to use all these photos over the last few months.  If I am mistaken, please contact me at fightmelanoma@live.com and I will remove ASAP.  Thank you again. 

AIMing for November 17, 2012

In late October of 2010, I had a thought of how wonderful it would be to meet some of the fellow bloggers in the Hotel Melanoma world.  I have read dozens of blogs with many of the writers sharing inspiring and moving thoughts.  Some have become good “virtual friends” while others have sadly passed away in their fight against melanoma.  Still, I wondered what could happen to bring some of us physically together.

Literally that same evening, I received an email from Rev. Carol Taylor, founder of the Melanoma Prayer Center and the Melanoma Grief Chapel, as well as writer of the blog “Attitude of Gratitude.”  She was asking if I’d be willing to join her and two others (Chelsea Price of “Adventures With My Enemy Melanoma” and Rich McDonald of “Hotel Melanoma”) in organizing some type of fund-raising event.  Wow…talk about timing.

We had collectively decided to organize a fund-raising walk…but eventually realized the logistical challenge of four people across the country trying to organize one single event.  I’m not sure we could have pulled it off, but then Rich (I think) suggested that maybe we should pull together our efforts and support an already existing event.  Brilliant!  As it so happened, Chelsea was about to participate in the AIM for a Cure Melanoma Walk in Charlotte.  Based on her incredible experience, and the support and assistance from event organizer Anne Bowman, it was decided that we would work towards raising money for the 2012 AIM for a Cure Melanoma Walk!  But best of all, we’d all finally be able to meet one another.  Even Rich said he’d come in all the way from Colorado!

I’m happy to announce that a date has been set for the 2012 walk…November 17, 2012.  I’m sure we’ll have more details as the date draws closer, and soon some of us may start soliciting donations. Honestly, asking for money has never been my strong suit as (1) I also have many financial struggles and find it difficult to give hardly any money and (2) I’m just not an “asking” person.   But, eventually I will ask for you to either join us in Charlotte, NC on November 17, 2012…or to support one of us as we walk to support the fight against melanoma.

November 17 is the 322^nd day of the year.  I am writing this on January 2^nd, the second day of the year.  That means you have 320 days to save up to donate.   Saving one dollar a day would allow a donation of $320!  Of course, that's a lot of money to many (including me), so consider setting aside only a quarter a day.  That itself would add up to an $80 donation!  Even a dime a day would add up to $32…so crack open that jar and start dropping in your change today.  In a few months, we’ll be asking for your help.

Last year the Charlotte event raised over $35,000. My personal goal (not endorsed by others yet) would be to exceed $50,000 in 2012.  What a wonderful gift to the world…all from a few coins a day! 

Even more wonderful would be if you could join us in Charlotte!  Putting faces and feeling hugs from all these people we’ve read and shared with would make it the best day imaginable.  I would love for each of you to be a part of it!

I'll have more to share on this event soon.  Stay tuned!