Real Ugly

I just wrote a blog of which I wasn’t very proud, so I decided not to publish it.  Within it, I suggested that the best “celebrity endorsement” for melanoma awareness would be a melanoma-diagnosed member of the Jersey Shore.  I have to say, as much as their blatant disregard towards tanning dangers infuriates me, I really can’t honestly wish melanoma upon anyone.  Not even them.

But the fact remains that melanoma awareness could use a celebrity face.  Anderson Cooper recently appeared in a PSA for the organization “Out Run the Sun.”  Otherwise, I can’t think of any other celebrity voices towards our cause.

There have been famous melanoma survivors in the past.  Arnold Schwarzenegger, Senator John McCain, Troy Aikman and other come to mind.  Those that have passed away from the black cancer have included Bob Marley, Burgess Meredith and Maureen Reagan.  Unfortunately, none of these celebrities would garner the attention of the young tanners out there.  Young adults simply connect more with pop culture cartoon characters like…well...the Jersey Shore.

However, reality shows (like the Jersey Shore) are all the entertainment rage, so perhaps it’s reality that needs to be presented.  Recent PSAs such as “Dear 16 Year Old Me” and the one mentioned above have done a fine job, but they also show attractive and seemingly unaffected people.  (I know they're affected, just hear me out.)  Don’t get me wrong, “Dear 16” is the benchmark of all PSAs…it’s an incredible, emotional and informative piece of work.  But I have to wonder if the true ugliness of melanoma is being conveyed well enough through these PSAs to those that need to discover it. 

The more recent anti-smoking campaigns are rather shocking.   They’re “in your face” and rather disturbing at times, but I have to think they’re effective.  I’m not proposing that melanoma awareness ads become a scar-filled scare tactic, but I do think a little bit of reality needs to be added to the message.

I’m not sure the best way to do this.  Maybe melanoma awareness doesn’t need a celebrity face after all.  Celebrities are beautiful people from which an ugly message might not be effectively conveyed.  The real message that needs to be shared is that people with melanoma are beautiful...melanoma is ugly. 

Thank You!

About one year ago, late in the evening like tonight, I was playing around with PowerPoint.  Call it electronic doodling.  I had been pondering recently about the passing of my brother and how I should continue his message of melanoma awareness.  I had no idea that I was about to launch a campaign that would literally spread worldwide.  I was just doodling.

I had decided that the best way for me to convey Jeff’s message was to write a blog.  I had kept a personal one for several years, but it was only a potpourri of personal insights and opinions, and read by very few.  Still, rather than clog that blog with sometimes depressing thoughts of Jeff, I thought I’d try to share the melanoma awareness message in a separate blog and find a way to spread the word about the blog.  It was worth a shot.   But it needed a name and a look to draw attention.

Naming the blog “Black is the New Pink” wasn’t the hard part.  I’ve conveyed the origin before…when Jeff muttered “I wish black was the new pink,” it stuck with me as something I should remember.  So the title of the blog was decided upon, but the “look” was hard to grasp.  That’s why I started doodling on PowerPoint (I don’t have better drawing software).  After a few nights, I came up with this:

I have a good friend who’s a designer, so I decided to get her opinion.  She fed back that the color transition was a little too flashy, the font was too narrow to read from a distance, the beveled edge should be eliminated (something about looking amateurish) and the ribbon sucked.  (She was never shy to express her opinion).  I had to agree, and soon discovered that it was dang hard to draw an awareness ribbon on PowerPoint.  But I did it and developed the title and logo that you see at the top of this post and every.  I didn’t get a second opinion from my friend…this one just “felt” right.

Something inside me came alive when I created the logo.  Frankly, it’s a bit boring and simple, but when I finished tweaking it, I literally heard a voice inside me to tell me, “Let’s get started.”  I couldn’t sleep that night because I was excited for no reason at all.  All I knew is that I was starting something.

I didn’t write my first blog entry until a couple of weeks later.  I spent that time learning to design the blog page (I’m still tweaking it) and figuring out how to make a specialized page on Facebook to help get the blog noticed.  The voice reminded me (and continues to remind me) that it’s not me that needed noticed, but the message that needs to be read.  That’s when the excitement really started.

So here I am…once again sitting at my computer in my bonus room late at night just as I was about a year ago.  My smile continues, but it’s brighter even more tonight.  Earlier this week, my blog received its 20,000^th page view.  And my Facebook page received its 1,000^th “like.”  Wow!  I remember reading other blogs when I first began with 200 “Likes” and wishing I could get just half that amount.  I never would have guessed I’d have this level of interest in one year.  And the voice reminds me…it’s the message that’s important, and it will continue to be so.

I find it fitting that my first few “Likes” were from friends and relatives close to me, but my 1,000^th “Like” is from Dubai, United Arab Emirates!  Amazing!  I wasn’t joking earlier when I said worldwide!

Thank you for embracing the thoughts and message of “Black is the New Pink” and thank you for finding recognition in a late-night doodle from a year ago. 

How I spent My Half Day Off - Patient Day with the MRF

Dr. David Ollila and the McDonald Family

I recently attended the “Melanoma Patient Day” symposium held by the Melanoma Research Foundation along with the University of North Carolina Division of Surgical Oncology and the UNC Department of Dermatology.  The Rev. Carol was there as well and I encourage you to read her account of the day.  (Yes Carol, that’s two straight times I’m riding your coat-tails).  Still, I’d like to share a few observations and information that I learned...most of them shared by Carol and some a little more unique.

I was surprised by the first presenter who basically stated that there’s no proof (yet) that sunscreen helps to prevent melanoma.  There IS a recent study in Australia that suggests it MIGHT help.  I had to wonder if his (Dr. Antony Young) findings have been repeated by other studies, or if his results stand alone.  This seems to be contrary to almost everything else we read…so I’ll keep a close eye on this topic and keep you posted on what I find.

Dr. Young also mentioned that sunscreen is designated as a cosmetic in Europe, but as a drug in the US.  He stated that in response to an attendee who asked him if the chemicals in sunscreen are safe.  He assured us that the FDA, which monitors sunscreen, has performed their due diligence to assure the lotions are safe.

One last Dr. Young observation…he states that a person should use roughly 100 grams of sunscreen a day to protect one’s skin.  This equates to 3.5 ounces of lotion a day.  That’s about half a bottle of standard sunscreen each day.  Dr. Young acknowledged that sunscreen isn’t cheap, and cited one calculation that a family of four taking a week long holiday in Spain might likely spend more money on sunscreen than the holiday itself.

The second presenter discussed “pink” melanoma, or that which has little or no pigment.  It was pretty technical, but everyone ended up scanning their arms and legs after this one…it was rather eye-opening.

Dr. Keith Amos presented a very graphic discussion of surgical margins…aka, how much to cut out the melanoma and how to stitch it all back up.  I would have preferred a disclaimer at the beginning of this one…it was very graphic.  But it was also quite interesting to see advances in such work.  Who would have thought there’d be “advances” in reducing scars?

The discussion on Lymph Nodes by Dr. Justin Baker was interesting to me, despite it also being rather technical.  Since I don’t have melanoma, I have only read about people having lymph nodes removed, etc.  But I didn’t really have a full understanding of why.  This presentation taught me.

Nurse Patricia Long discussed the lack of, and therefore the need, to have a celebrity face to melanoma.  She cited the Michael J. Fox Foundation as well as Live Strong and the Christopher Reeve Foundation.  But she noted there was no one speaking for melanoma, despite a few celebrities that she presented as having it (Sam Donaldson, Cybil Shepard, and Arnold Schwarzenegger to name a few).  She mentioned the counter-melanoma group…mostly Jersey Shore and a show I’d not heard of before called Sunset Beach (I think) which was a reality show based out of a tanning salon (think Miami Ink, but tanning beds instead of tattoos).  While this had some interesting facts, I wish there could have been some additional discussion.  Unfortunately, it was time for the group to take a break and folks high-tailed it to the snack bar before one hand was raised for questions.  I would like to have asked what the bigger organizations (such as MRF) were doing to try to secure a celebrity endorser?  (Ironically, I saw Anderson Cooper’s piece for “Out Run the Sun” the night before).  Also, I would like to have at least informed the crowd that there is a vast and growing online community for support, education and advocacy.

During the break, I had the privilege of talking with a few folks. 

·         One couple is starting a new website called Cancer Warriors, sharing a healthy and more holistic type of approach fighting melanoma.  (The website is not yet complete, but I’ll share it upon release). 

·         I talked briefly with a gentleman named Dennis.  He caused the first round of applause at the symposium before it even started by standing and holding a sign that read “Stage 4 Melanoma Survivor.”  It was a touching moment. 

·         I introduced myself and talked with Shelby Moneer, Health Educator from MRF.  I brought “Black is the New Pink” business cards with me to help spread the word about this blog and the Facebook community.  She saw my card and said, “Hey, we ‘Like’ you!”  I was flattered that the MRF ‘Likes’ my Facebook page.  I told her I liked them back!

·         Three other individuals (I am SO bad with names) approached me once they over heard my BITNP connection.  I was thrilled t have ‘real’ people before me expressing thanks for my shared links, articles and thoughts.  I had trouble wiping a smile from my face the rest of the day!

Back to the presentations, there was one scheduled prsentation regarding “Protecting Teens from Tanning Beds.”  Unfortunately, this one was bypassed for some reason.  I was quite disappointed in that this is a very timely subject and I was interested in what North Carolina might be doing to address tanning beds in the legislature.  I’m aware of one bill that floundering “in committee” but would be anxious to know if there is any new legislation planned.  I guess I won’t know for a while.

Dr. Georgina Long talked about the history and details of BRAF.  I found this one a bit technical, but again quite informative.  Great results and they’re now starting clinical trials for Stage 3.

Dr. Moschos gave a presentation on brain metastasis.  This was probably the most technical discussion and I got rather lost.  What caught my attention most is that he recently moved to UNC from the University of Pittsburgh, where my brother first sought treatment.  I believe I recognized this guy’s name and wondered if he had treated Jeff.

Lastly was a very touching presentation by the McDonald family who chronicled their now eleven year old daughter’s journey through melanoma.  They first thought it was a tick, then a wart, then went months before having this growing location on her inner thigh removed by a plastic surgeon.  They finally got a diagnosis and it was touching to hear of the obstacles she overcame.  I caught up with the McDonalds afterwards to thank them personally and share my brother’s story (and another business card) and discovered that they line in the same town as I!  I hope to find them visiting Facebook or BITNP soon!

Overall, it was a great experience.  I thoroughly enjoyed meeting Carol and sitting nearby as we watched the presentation.  I also enjoyed meeting others and hope to meet again soon.  I plan to attend this symposium again next year and invite everyone to visit an MRF (or other organization’s) educational forum near you!

What It's Like To Have Melanoma...From Someone That Knows

When I first began writing this blog, I decided that I wanted to learn all I could about melanoma and how to prevent it (mostly to understand why it took away my brother).  Since that time, I’ve shared dozens of articles on my Facebook page about new advances and treatments, and I’ve attempted to convey startling and somber facts in order to shock a few tanners and “non-believers” (those who think melanoma is “just skin cancer”).  I’ll continue to do what I can to educate, inform, and sometimes entertain with regards to melanoma.  That’s one reason I’m excited about attending the Patient Day Symposium in Chapel Hill, NC on Wednesday, February 15.  This will be a chance to listen to and talk with real people and perhaps gain a more personal perspective on what I try to share.  But there’s one thing that I hope I can never ever share with you.  What it’s like to have melanoma.

Unlike many bloggers in the melanoma community, I do not have melanoma.  I may be allowed to roam the lobby and commons area of the Hotel Melanoma, but there’s no way I’m allowed into the resident area.  And, no offense intended, that’s the way I like it.  But at the same time, I sometimes feel frustrated when writing because I truly do not know what it’s like to have melanoma.  I feel the emotion and pain in so many blogs, but there’s no way I can even come close to expressing that experience without having had it.

But someone has.

You probably read “Attitude of Gratitude” by the Rev. Carol.  She has Stage 3 and shares quite a bit in her blog and her Melanoma Prayer Center on Facebook.  She recently wrote a post called “Come Over To The Dark Side…Of Melanoma.”  In it, she expresses very well what it’s like to have melanoma.  She expresses the anxiety, the fear, and the effects on family members.  Carol tells it all.  And it’s quite effective.

So consider this posting of mine more of a hand-off.  Read the good Reverend’s blog and pass it on.  Share it with people who have no earthly idea what it’s like.  Share it with someone who doesn’t have melanoma. 

Uncontrollable Risk Factors

There has been a lot of news and discussion lately about tanning beds.  A congressional report came out stating that tanning salons were being deceptive with their “facts” in an effort to bring in new clients.  Several states have introduced legislation to ban or severely limit tanning bed use.  And New South Wales in Australia made news when they voted to ban the beds for minors.  It seems that the beginning of the end of tanning beds is near.  But let’s not forget those who were not affected by the sun or tanning salons.

A video of a young lady, Kelsey, who has had melanoma since she was 14 was recently posted on YouTube.  At age 19, she’s been through it all…and her fight continues.  What’s interesting in her first video is that she states that she stayed away from tanning beds.  Unfortunately, she still has a higher risk for melanoma.  She’s a red head, therefore is two to three times more likely than others to be diagnosed with melanoma.

The Melanoma Education Foundation website posts a list of high risk factors that have nothing to do with tanning beds, known as Uncontrollable Risk Factors.  Essentially, if one of these factors applies to you, you have an increased chance of melanoma.  I present the list below, with the associated “risk multiplier” for each factor.  Some of the increases are startling:

Risk Factor                                                                         Risk Multiplier

50 or more normal moles                                                   2x – 4x

One atypical mole                                                              2x

Red/blonde hair, blue/green eyes,                                    2x – 3x
and or light complexion

Heavily freckled with no atypical moles                            3x

Personal history of non-melanoma cancer                        3x – 5x

Undergoing immunosuppressant treatment                      4x – 8x
or medication

Ten or more atypical moles                                               12x – 14x

Heavily freckled with many atypical moles                       20x
but no family history of melanoma

Personal history of melanoma                                           9x – 28x

Two immediate family members (parent,                         100%
child, or sibling) have had melanoma

Many atypical moles and one immediate                         100%
family member has had melanoma

Having certain skin diseases such as lupus                     Very High
or xeroderma pigmentosum

Taking a photosensitizing medication                              Unknown
or treatment

What astounded me most were the two factors that state there is a 100% likelihood of being diagnosed with melanoma.  I thought for sure I misunderstood that, so I contacted the MEF directly.  Steve Fine, the president of MEF emailed me to confirm that the risk is indeed 100%.  Wow.

What this tells us is that, even if you don’t tan, you need to get checked regularly…especially if you have one of these higher risk factors.  Sure, tanning and sunburns contribute to skin cancer and melanoma (see their site for “Controllable Risk Factors”) but the beast can still affect you without the aid of UV rays.

Just ask Kelsey.

Fellowship and Melanoma

When I write some of my blogs, I sometimes mull over a particular topic for a couple days.  All weekend, I was mentally composing such a blog post and was ready to put fingers to keyboard when I got my “me” time tonight.  But then, as often times happens (more so than not actually) I was touchingly distracted.

I first thought of this “Black is the New Pink” concept about a year ago (warning…one year anniversary summary blog is just around the corner).  If I were to describe my experience over the last year with one word, it might be “fellowship.”  I never would have imagined the fellowship and bond that I’ve witnessed in the melanoma community.  Whether you call such folks molemates or residents of the Hotel Melanoma, they all bond together to support one another in an uncanny “one group, one mind” kind of way.  I realize that headlines and comments from others tend to inspire multiple blogs on the same subject, but there have been times when a topic arises seemingly out of nowhere, and yet Facebook and the blog-osphere seems to be focused upon it. It’s the power of all as one I suppose.  But at no time does the “melanoma collective” come together like when one of their own is in need of thoughts and prayers.  I witnessed this as I logged on this evening to write my aforementioned thoughts.

Steve Hock has shared his story with very candid photos and comments.  I only started to follow his journey a few weeks ago, but I found it fascinating.  Steve has faced one obstacle after another and yet he seems to move past with a smile and incredible optimism.  He seems to have no fear (a necessary trait of skate boarders I would assume).  Unfortunately, Steve has hit a pretty big bump and was readmitted into the hospital where he reported that his brain tumor was growing back.

In true molemate fashion, you are rallying around Steve.  Calls for prayers, thoughts and good vibes have been sent out from several personal Facebook pages and blogs.  The collective is focused on Steve’s health and of the well-being of his family.  It is truly amazing to witness (once again) how this community of people…each with a common bond of melanoma…come together so fluidly.

While I don’t have melanoma, I am proud to be associated with this group of people and honored to have witnessed this fellowship over the past year and every day.  My prayers of course go to Steve and his family.  My admiration and utmost joy goes out to everyone in this community.  I’ve said before that “great things are happening” with regards to medical advances to fight melanoma.  But greater things are happening each and every day among the people…the warriors in the fight.

A Short Rant at the Tanning Salon Deception

You most likely have already heard about the congressional report about tanning salons lying to customers to get their business.  Investigators, posing as 16-year-old girls called 300 tanning salons across the country.  Ninety percent of the salons assured the callers that there was no health risk and over seventy-five percent claimed there were health benefits to indoor tanning!  Over half stated that there was no increased risk of skin cancer.

Amazing…but not surprising.

About 25 years ago, I was a young, single, somewhat geeky and skinny male that was looking for any advantage to “look better.”  I had an after work routine of work-outs and/or socialization (aka…going to the bars).  On Tuesdays the Thursdays, I also included a trip to the tanning salon.  Thursday night was “Ladies’ Night” at the local bar and I wanted to have that glow.  I had signed up for a total of 10 sessions, each one lasting between 15 and 20 minutes.  I was told to set the timer myself (I sometimes set it for 25 minutes) and wipe down the bed with Windex afterwards.  That was my entire maintenance instruction.  I do recall that I was told tanning beds were safer than the sun.  The topic of cancer never came up (I was too unaware to mention it)…only that the UV rays that burn you aren’t used….only the “good” UV rays.

Yep, the good ones that cause cancer.

So again, it’s not surprising that this recent report shows misinformation in the tanning industry.  Twenty-five years ago, I blame naivety on the owner’s part.  Now…it’s plain old deception.  There’s no excuse at all!

On a happier note, there is legislation in several states right now regarding tanning regulation and/or banning.  One has to believe that this congressional report will only help these measures get passed on the state level.  Furthermore, New South Wales I Australia recently passed a tanning ban.  This was in large parts to efforts by Jay Allen…a person with whom many melanoma warriors are aware.  Thank you Jay!

This report is big.  It’s great news.  And it’s making great things happen!

Patient Day at UNC...February 15, 2012. Be there!

On Wednesday, February 15, 2012 the Melanoma Research Foundation, the University of North Carolina Division of Surgical Oncology, and the UNC Department of Dermatology will present a full day of melanoma education dedicated to melanoma patients and the people who support them.  I plan to be there!

Per the brochure, there will be a variety of topics discussed as follows:

·         Sunscreens: Can They Protect Against Skin Cancer?

·         Diagnosis of ‘Pink’ (Amelanotic) Melanoma

·         Why Does My Scar Look Like That? Understanding Surgical Margins for Melanoma

·         The Current Role of Lymph Node Surgery in Melanoma Treatment

·         High-Profile Melanoma Patients: Underutilized Resource

·         Protecting Teens from Tanning Beds: An Update about the National and State Policy Debate

·         The BRAF Story — From Target to Treatment and Beyond

·         Understanding the Biology of Melanoma Brain Metastasis as the Basis for More Rational Treatments

·         Melanoma: A Parent’s Perspective

For a list of speakers, please check the MRF website.

I think this will be a very exciting day to talk to those involved directly with melanoma research and awareness, plus a chance to meet with folks from BITNP and beyond face-to-face!

If you’re interested in attending, please go to the MRF website page to register or call (800) 673-1290.  Deadline for pre-registration is Friday, February 3.  The symposium itself will begin at 12:30 on the 15^th of February and end at 4:30.  I think it will be an incredible afternoon of information and sharing.

I hope to see you there!