3,000 and Growing

Life has been pretty hectic lately, so I was extremely surprised to read what the Rev. Carol Taylor (of the Melanoma Prayer Center) posted on my Facebook page:

“Congratulations for breaking 3000!  Keep up the great work.  I'm sure Jeff is beaming with pride.  Blessings, Al!”

As my son would say, “Wait…whut?” 

Wow!  3,000 “Likes!”  Honestly, when I first started, I never thought I’d reach 100.

Back in August of 2012, less than a year ago, I reached the 1,500 mark.  How I doubled my “Like count” in such a short time baffles me.  To all readers…thank you!

As I’ve mentioned before, I keep a list of folks that “Like” my page.  Not for stalking purposes mind you, but just to get a feel to where my words are spreading (and to satisfy my little touch of OCD).  I’m happy to say that all 50 states have visited my page with North Carolinians visiting more than others.  Texas, Ohio, California, and Florida round out the Top 5.

My international presence has spread to 44 countries or territories now.  Citizens of Australia have visited my BITNP page more than others while Canada, England, and Italy have followed close behind. 

While the numbers are impressive, they are also somewhat discouraging.  Chances are that nearly all readers have been touched by melanoma in some way and were led to my page (and others) as they searched for answers.  On one hand, I’m so glad they’ve liked my page and hopefully have reached out to other readers for those answers.  On the other hand, I wish there was no need for answers…I wish that melanoma touched no one.

I’ve noticed periodic spikes in increased readership over the years.  Not long ago, there were about 15 straight new “Likes” from Indiana.  Again, thrilled to have new readers but saddened for the reason.  I knew that someone these people loved was most likely directly touched by melanoma.  What’s inspiring about such a spike however is that this person seems to have a strong group of supporters and loved ones.  The person affected is obviously surrounded by great people.

Despite the fact that most readers are already aware of melanoma, I’d like to think that each new “Like” means someone learned something new from a link or thought shared on my page.  I’d prefer not to concentrate on the number of readers, but the number of increased awareness.  For that reason, I’ll continue to spend late nights searching Google and Bing for news and stories related to the fight against melanoma.

While the 3,000+ people who have “Liked” my page have all been touched by melanoma, let’s take a moment to consider how melanoma could statistically affect 3,000 average people.  Current stats show that 1 out of 5 folks will be diagnosed with skin cancer in their lifetime.  That means out of a random 3,000 people, 600 will eventually have skin cancer!  For melanoma, the statistical odds are 1 in 50.  That means 60 people will be diagnosed with melanoma!  That’s 60 too many!

When I first started my Facebook page, I launched it as a promotional page for my blog.  I had no real plans to use it as the primary tool to spread the word about melanoma awareness.  As it turned out, the page became far more effective as I have been able to link stories and articles almost daily.  It has also been the main conduit to meet and associate myself with some really incredible people.  I doubt I would ever have formed such a strong bond with Carol, Rich, Chelsea, Timna, Katie, and so many others through my blog alone and without my Facebook page. 

Thank you again for “Liking” my Facebook page, and for reading this blog.  I do this in memory of my brother Jeff, in honor of my growing children, and in awe of the amazing people who have come into my life!

 

Al

Time Flies! Two Years of BITNP

In a few hours from now, time will leap ahead one hour.  I think it’s a most appropriate day for me to be amazed at how time flies.  A little more than two years ago, I first put my fingers to keyboard and shared my thoughts in this little blog called “Black is the New Pink.”  I can hardly believe that it has been two years!  In fact, the anniversary passed me by 4 days ago without me even realizing.

While the first year was fantastic, I have to say that year two was even more incredible.  Prior to my first anniversary, I had met the Rev. Carol who is an incredible presence in the online melanoma community.  I’ve been fortunate enough to cross her path a couple of more times since then, but also extremely blessed to have met so many others.  Anne, Timna, Chelsea, Rich, Tara, Donna, Mark…the list goes on!  The first two, Carol and I met while lobbyingfor the anti-tanning bill at the NC Legislative building last year (and Anne continues to be a major force in this year’s campaign!)  The others I met at the amazing AIM for aCure Walk in Charlotte in November.  There are so many others I’ve virtually met online and via Twitter…far too many to mention.  I have highlighted some of these folks in individual blog posts (such as Hillary and Lily) while I’m sure I’ll introduce the world to others soon.  I hope to meet many more in the coming year and beyond!

To “celebrate” my second year of blogging, I’d like to do the same thing I did last year by reviewing my Top 10 most read blog posts from Year Two.  But before I get to the countdown, I’m amazing by the staying power of some of my older posts.  Real People of Melanoma continues to be read almost daily and is still, by far my most read blog.  People still seek out Eric Sizemore and TinaSullivan.  And of course, people still search for my T-shirt.  (By the way, I’m trying to find a cheaper distributor/manufacturer…I’ll share more on that in a few weeks…I hope).

So here’s the Top 10 of Year 2:

#10 – Tanning Myths and Facts

I wrote this the day before I joined Carol, Anne and Timna at the North Carolina Legislative Building to lobby the anti-tanning bill (the fight is still going on!).  I had thought that if a representative wanted to know the facts about indoor tanning versus the myths, I could simply say, “Read my blog.”  I’m not sure if anyone did, but I still think it’s a good piece on tanning facts and myths.

#9 – Melanoma, Theories, and Cat Poop

I had fun showing a more humorous side…although there’s really not much funny about cleaning up cat poop and pee from previously nice furniture!  (By the way, I have two almost-new bean bags available to give away…please ignore the smell of cat piss.)  Yet the real thrill of writing this piece was sharing some good news of a definitive medical link between UV rays and melanoma.  Previous links were primarily statistical and not as strong…a fact the tanning industry used to jump all over.  But as of this writing, that all changed.  It seems the tanning industry has started to crumble ever since.

#8 – Photos from the Amanda-Corey Memorial Walk

I had the great pleasure of meeting with some folks who organized an MRF Walk right here in Apex, North Carolina in honor of their two daughters, Amanda and Corey.  My personal schedule has prevented me from helping out much this year, but I hope to start pitching in soon for the 2013 walk to be held in October again.  I’m pleased that this piece continues to draw in readers, but I have also learned that there’s a Playboy model by the name of Amanda Corey.  Even if that’s the reason Google leads people to this site, it’s a convenient way to spread the word about melanoma awareness!

#7 – Oompa Loompa…

When I read that the director of the original “Willy Wonka and the Chocolate Factory” had died after a bout of melanoma, I felt it appropriate to honor the Oompa Loompas which have become an iconic caricature of extreme tanners.  I also paid tribute to Rich McDonald who runs the Hotel Melanoma and has an amazing gift of converting classic rock lyrics to melanoma based lyrics.  It took me forever to write one modified verse of the Oompa Loompa song…I don’t see how Rich can knock out so many songs so quickly.  Well done!

#6 – The Sun/Water Analogy

I wrote this piece in response to a Today Show segment in May which features Joseph Levy, sun tanning industry spokesperson and guru.  (Yes, the same Joe Levy who nearly killed the bill currently in the NC General Assembly.)  Mr. Levy made a comment that sun is essential, like water…a necessity of life.  I decided to share that water can be dangerous and that sunscreen was analogous to wearing a life jacket.  I doubt Mr. Levy would have listened, but I hope others did.

#5 – Where Was Your Melanoma?

This was my first “Facebook first, Blog second” posting.  Meaning, I posted a question on Facebook, asking where on one’s body melanoma appeared.  I received a tremendous response and decided to share the results in my blog.  My results came very close to actual diagnosed locations as shared from the Melanoma Education Foundation.  The point of this piece was to make sure you get checked…from head to toe!

#4 – A Plea for Help to the Breast Cancer Community

This was a “letter” I wrote to the breast cancer community after seeing pink ribbons on tanning products or in tanning salon promotions and after tanning sessions were offered as a door prize at a breast cancer awareness event.  My point was that we all fight against cancer and that I was merely asking them to help fight our cancer by preventing such promotions in the future.  I hope that the high readership of this blog helped to accomplish this.

#3 – Black Salve

This one continues to amaze and confuse me.  I ran across a video where the smarmy girl announced a “natural cure for skin cancer and melanoma.”  This cure is Black Salve…a corrosive compound that eats away the flesh.  There are multiple accounts of the dangers of this product (it’s banned in the US and its primary manufacturer operates out of Ecuador) so I wanted to bring this to light.  Amazingly, most people who’ve read this posting seem to support the use of black salve.  I posted a question on Facebook and several of my readers stated that they’d be tempted to try it.  I’m not a doctor, but based on my reading, I wouldn’t advise using it.  Then again, I don’t have melanoma so I’m not capable of understanding the limits one would go to eradicate the disease from their body.

#2 – Does Melanoma Hurt?

It’s interesting to see what key words or phrases in Google led people to my blog. “Does melanoma hurt” has been such a phrase that has popped up many times.  I attempted to answer as best I could and many of you shared your insight.  That question still comes up weekly as one of the key words in Google.

#1 – Hillary Quinn Kind – A Simple Gift

Hillary Quinn Kind was the melanoma warrior that was featured in the Stand Up 2 Cancer special on television.  In an instant, she became the face of melanoma.  The entire melanoma community went crazy for her and her story touched so many others.  Melanoma had taken its step to the forefront of the cancer stage beside others and its face couldn’t have been more beautiful.  But in October, Hillary passed away.  I’d never met her or corresponded with her, but I was deeply affected by her death.  Apparently, so were many others as this is the second most popular post I've written overall! The haunting song of “Simple Gifts” that was played during her video on SU2C also has a very personal meaning to me regarding my brother Jeff.

And that’s the reason for this blog…Jeff.  While I wish every day that Jeff was still with us, in some ways his bout with melanoma became a blessing for me.  He inspired me to carry on the message of sun safety.  He inspired me to talk with people I may never have met.  He has given me purpose beyond what I felt I needed.  As I stated last year, I will continue to write this blog and spread awareness of this awful disease. I will write my legislators to ban tanning for minors…not only in Jeff’s memory but to protect my own children.  I will share his story and I will share the story of many other warriors.  I will feel great joy when I hear of a warrior’s…a friend’s…success in fighting melanoma.  I will feel great sadness at word of one’s struggle or passing.  And I will cry every damned time I hear “Simple Gifts”…even when played by the WVU Marching Band.

Thank you for continuing to read my blog and follow me on Facebook.  I hope the day comes when we’ll never have to mention melanoma again.  Until that day, let’s keep fighting…together!

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!

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. 

Checking Out My Birthday Suit

About six or seven years ago, I started an annual tradition.  My brother discovered he had melanoma on his back…I believe it was Stage 1...possibly Stage 2.  Either way, he mentioned that his dermatologist stated that siblings of melanoma patients are higher risk and should be checked annually.  For once, I listened to my older brother and made an appointment.  The first appointment I made was on November 1, and I’ve tried to make subsequent annual appointments on the same calendar day.  It’s the day after my birthday and I figured it was as good a day as any to have my birthday suit examined.

I had my annual visit today.  This year’s visit differed than previous years because of my growing awareness of melanoma and skin cancer.  I was actually nervous driving to my appointment, although I really had no concerning spots on my skin.  I had three minor spots I wanted to point out…two of them having been mentioned by other medical professionals.  But in general, I had no real concerns.  All I really had was the growing paranoia that comes with knowledge.

I told the doctor of my recent months scouring websites and information regarding skin cancer.  I asked him questions I hadn’t asked before.  “How do you compare a patient’s condition year-to-year without taking photographs?”  “What recommendations do you have for self-exams?”  “What are your thoughts on tanning beds?”  I won’t share all his thoughts here (I failed to ask for permission to convey his thoughts online), but it was nice to have a face-to-face discussion with a medical professional and not merely read another online article.

I walked away from my appointment with my questions answered and an announced clean bill of health.  Still, I had an unsettled feeling.  You see, in the waiting room of the practice, I saw all sorts of ads, displays and brochures for many skin care products.  This practice was not just a general dermatological practice, but they also offered many cosmetic services.  I have no issues with this…there are certainly many aspects of skin health that a dermatologist handles outside of skin cancer.  But still…I didn’t see one brochure, flyer or even mention about skin cancer prevention.  This disappointed me.

I decided to check their website this evening and found several sections related to various skin conditions, including one on skin cancer, one on sun damage, and another on “Teen Tips.”  While they mentioned that the sun can add to skin aging and sunburn, there was no mention of the dangers of tanning beds.  Of all sections, one would think the Teen Tip page would have some warning regarding UV tanning.

I checked other local dermatologist’s websites and found the same…rarely a mention of tanning beds or other skin cancer dangers.  Well, there was one local practice that mentioned tanning bed dangers, so I emailed them and thanked them for posting such info.  Then, I decided to take action.

While my dermatologist’s practice had no email address posted, they do have an address…so I wrote an old fashioned letter (snail mail).  In it, I wrote the following:

I would like to make one suggestion.  As I mentioned today the decision in California to ban tanning beds for teens, I would love to see <your practice> add a paragraph in your website with regards to teens and tanning beds.  As you most likely know, melanoma and skin cancer is rising in younger adults and teens…and studies suggest much of this may be due to tanning beds.  I can understand your practice not taking a more political stance with regards to an imposed ban, but I think a statement in your “Teen Tips” section, amongst the acne information, informing teens of the dangers of tanning beds would be a responsible act on <your practices>’s part.  An additional mention in your “Skin Cancer,” or “Sun Damage” sections would be recommended as well.

Small actions…small steps…create great strides.  I’ll keep you posted on any response…and encourage you to send a similar letter or email to your local dermatologist practices.

Thanks to my clean bill of health, I hope to be making such small steps for many years to come…all dressed in my birthday suit.

One Small Step...

It's a super busy time for me and the family lately.  My father is visiting as he and his wife pass through on their annual migration from West Virginia to Florida; my daughter has joined Girl scouts; my son is equally involved; and the "holidays" for us definitely starts pre-Halloween.  So my apologies if my blog time falters a tad and I seem to neglect my efforts to address melanoma awareness.

I wanted to share one quick note.  I had a business meeting the other day with a gentleman named Jim Downey.  I've known Jim for about 10 years now as he's worked in sales for product with which I'm directly involved.  I'd say that our relationship has become more of a friendship than that of strictly business acquaintances.  We know each other's favorite sports teams as well as various potlicial views.  We might not always see eye-to-eye, but we have a good respect for one another. And, he knows of this blog and my mission to spread awareness regarding melanoma.

At the end of our 20 or 30 minute discussion, he said he wanted to share something more personal.  He smiled and said, "After we'd talked in the past, I decided to go visit the dermatologist.  I want to thank you for insisting I visit."  It turns out nothing serious was found with Jim, but he did have some pre-cancerous spots removed from his scalp (actinic keratosis).  I was happy to hear of his relatively clean bill of health, but even more thrilled that he was inspired to get his skin checked in the first place.

Cleaning the house for family visits, helping a child learn a scouting oath, assisting another in a social studies project...they're all important but often overwhelming. It makes one wonder if the wheels are merely spinning in the mud and nothing is really moving.  But then one hears of something positive...an affirmation that at least one little step forward was made while attempting to raise melanoma awareness among all the madness of every day life.

That's what it's all about.  Making small steps.  Making people aware. 

Make sure you take one smal step each day to make others aware.

Thank You Barb!

I wanted to share a quick follow-up to my previous blog about spotting the black ribbon on a Breast Cancer Awareness display at the mall.

One of my many great readers on my Facebook page, Barb Maxwell, decided to contact the American Cancer Society regarding the use of a black ribbon.  Well, she got a response!

Thank you for sharing your important concerns with your American Cancer Society. Congratulations on your survivorship! I am truly sorry to hear about the loss of your friends to breast cancer, and understand and concur with your desire to see more done to raise awareness for melanoma, as well.

As black is melanoma’s signature color, I can see how the sign you saw could lead to confusion and frustration, and sincerely apologize for this oversight on our part. I appreciate your bringing this matter to my attention, and have made certain to forward your feedback on for further action.

The American Cancer Society takes the battle against melanoma cancer seriously, and works to fight the disease and its effects through research, education, advocacy, and patient services. If you are interested in opportunities to volunteer with the Society in promoting melanoma awareness, please reply to this message, and I will be happy to forward your request to our advocacy coordinator.

Thank you again for taking the time to share your thoughts with the American Cancer Society. Your feedback is invaluable.

Sarah
Online Cancer Information Specialist

Thanks Barb for taking my thoughts a step further!  Addressing such concerns more directly is the first step that all of us can make in increasing Melanoma Awareness.  This is certainly a lesson learned in advocacy!

Also thank you to the American Cancer Society for replying to Barb's concern.  Let's hope they truly "forward the feedback" and perhaps also have a more aggressive Melanoma Awareness campaign during OUR month of May.

And finally, thanks to all of you who have read my words and the thoughts of others and started discussions online, in person, and through email and advocacy campaigns.  Like the letter above says, there are opportunities to do more, through the ACS, MRF or any other such group.

"...That's what you could do for me!"

Giuliana Rancic appears on the E! Network as co-host of “E! News” and “Fashion Police.”  She’s been appearing on a Style Network reality show where she and her husband Bill have been documenting their struggles with infertility and attempts to conceive via IVF.  In the most recent episode, she was seen heading into a clinic for her next round of treatment.  Knowing that hormones increase the spread of cancer, the doctor ordered a mammogram prior to the treatment...”just in case.”  They found breast cancer.

I know...we melanoma folks tend to have a bit of pink envy.  While supporting the fight against ALL cancer, we get a little riled at the high profile nature of breast cancer awareness over all others.  But I wanted to share this story because of a remarkable quote that Ms. Rancic shared. 

"I had a friend call me yesterday, and she said, 'I'm so sorry, can I do anything for you?' And I said, 'Just call your doctor tomorrow and make an appointment. That's what you could do for me.'”

That’s such a powerful statement and I think a message we’ve all conveyed.  The best thing someone else can do for us is make an appointment to get checked.  That’s all we’re trying to say!

Well, I take that back.  The melanoma bunch has a two-fold message.  “Get checked...and wear sunscreen!

Did You Hear?

Photo from executivehealthexams.com
© 2011 EHE, Inc. All rights reserved

Did you hear?  Governor Brown of California has signed a bill into law which bans tanning beds for minors!  This is incredible news!  But let me ask this again…did you hear? 

When I scan the internet for links for my Facebook page, I typically do Google and/or Bing searches for melanoma “news” and “videos.”  When word of Yervoy and other drugs came out, there were videos a plenty.  With this news from California, I saw plenty of links to news articles, but no videos.  There seemed to be no videos that aired on the broadcast news.  I eventually dug deeper and found one at CBS News.  Unfortunately, the text accompanying the video read “the health police are at it again.”  Hardly a glowing report on a potential life-saving decision.  It seems the broadcasting of this news was quite limited.

Next I checked a couple of major cancer organizations.  These aren’t just the melanoma people, but groups that encompass ALL cancers.  Since I recently “liked” this group, I looked at Stand Up 2 Cancer’s Facebook page.  Nothing.  Not one word.  I then looked at the American Cancer Society FB page.  As of right now, there is only one comment about the California law…and it’s posted by yours truly.

This is disturbing to me.   I feel like melanoma is the young teenager that still has to sit at the kids’ table during holidays.  Sure, this is Breast Cancer Awareness Month and the color pink has completely taken over this month (which ironically used to be about orange and black which just happen to be the two melanoma colors).  Perhaps the focus on Breast Cancer has these all-cancer organizations so focused on pink football cleats and pink Pringles containers that they simply didn’t notice this news that’s very important to the melanoma bunch.

Then again, it could be that these all-cancer groups don’t want to rock the boat.  After all, not everyone is celebrating this new law.  There is a HUGE tanning industry that just took a big hit and, frankly, many patrons of these solariums just don’t get it.  They believe the government is taking away a legal right to tan.  (Note, they only banned the use of tanning beds from minors…teens can still legally get skin cancer the old fashioned way under the sun).  I have to admit that I understand their argument.  I don’t agree with the tanners' point of view (because I’m informed of the truth) but I understand.  If it was determined that consumption of M&M’s caused mouth cancer and thus the sale of M&M’s was banned, I’d be fighting that decision to the Supreme Court.  But then again, maybe if there was overwhelming hard evidence from a number of medical organizations around the world, I might eventually be convinced to eat Skittles.

Thankfully, organizations like the Skin Cancer Foundation, MRF, and AIM at Melanoma are getting the word out and spear heading these new laws and campaigns.  Most of all, they’re working to educate people on the dangers of UV radiation and trying to get the point across that skin cancer is preventable by being sun and UV smart!

Did you hear that?  Preventable!  I hope others hear that as well.  

Linked to Pink?

October is Breast Cancer Awareness Month.  But did you know that Melanoma could have a direct link to the Pink Cancer?  It’s true!  An article in the Skin Cancer Foundation’s website explains how having one of these cancers raises the odds of developing the other.   (Thanks to the curator of Hotel Melanoma for bringing this to our attention).

Dr. Gillian Murphy of the Beaumont Hospital in Dublin, Ireland, states that patients with melanoma or other skin cancers have always been at higher risk of developing other malignancies , but with breast cancer, there’s a fourfold increase.  Per Dr. Gillian, this “raises the possibility of a genetic predisposition linking the two cancers.”

This is good news for a couple of reasons.  First of all, research for one type of cancer may now aid in research for the other.  Any little bit of new information we learn about one just may indeed help out the other.

The second reason is admittedly more selfish.  Melanoma Awareness needs a boost…and the Breast Cancer Awareness campaign is about a big a boost as a campaign can get.  In the month of October, you’ll see about as much pink as you will traditional autumn colors.  Whoever first marketed the idea for this pink awareness campaign was either a genius, a sales whiz, or really darned lucky.  But imagine…a small amount of proceeds from everything donning a pink ribbon goes to Breast Cancer Research or Awareness.  And not just t-shirts and hats, but candy, detergent, and even Chick-fil-A meals!  I know that there is never enough money for research, but by golly, the Pink Warriors have a good thing going.

This might sound like jealousy.  It’s not. Despite this blog’s name “Black is the New Pink,” I’ve had the utmost respect for the Pink Ribbon campaign.  No…not jealousy.  Envy.  Like an LA Clipper fan that envies the Lakers.  Like a NY Mets fan that envies the Yankees.  It’s not hate…it’s envy.  And in my case towards Breast Cancer Awareness, it’s respect.

I would love to see the Melanoma Awareness campaign be half as effective as the Pink Ribbon campaign.  Unfortunately, we have a few things going against us.  For one thing, the gurus that determined the cancer awareness ribbon colors assigned Melanoma the color black.  This is appropriate in that the word “melanoma” literally means “black tumor.”  But unfortunately, black ribbons also represent death and mourning.  Orange is an alternate color I’ve occasionally seen associated with Melanoma Awareness…but black dominates for now.  I doubt that Keebler would don the black ribbon on their packaging for fear the public would think the elves died. 



© Keebler...dead or alive



Another thing going against us is that non-melanoma skin cancer is so damned treatable.  This is a good thing if you discover your skin cancer is non-melanoma…but it’s a bad thing for melanoma’s street cred.  “It’s Just Skin Cancer.”  No…it’s not…but most folks just don’t get it.  Until they get it.  I don’t wish for non-melanoma cancers (such as basal cell carcinoma and squamous cell carcinoma) to become more deadly, however the fact that they’re very treatable creates an ironic barrier for Melanoma Awareness Campaigners.

Partnering up, or perhaps merely riding the coattails of Breast Cancer Awareness might be Melanoma’s big break.  Whether it is or not, we at least have our small rebellious forces of Melanoma Warriors…screaming from our blogs and Miles For Melanoma events…and hoping to be heard.

In this spirit of breast cancer awareness, I’ve prepared a little treat.  I’m not a programming genius, but I made up a movie (my first attempt ever) with my own little take regarding the link between Breast Cancer and Melanoma.  I apologize for no sound to this movie.  It’s a little over a minute long, so the silence shouldn’t be too overbearing.  If any readers have some suggestions regarding a freebie soundtrack or enhancement, feel free to inquire and I’d be willing to make an adjustment.  Until that point, please enjoy what I’ve prepared…and by all means share it!

"People Need To Know..."

It was a year ago today that I last saw my brother alive.  After his announcement a few weeks earlier of having Stage IV Melanoma, I decided I’d best go pay him a visit.  My father encouraged me to “do it soon.”  So I drove myself 5 ½ hours from the Raleigh, NC area to near Charleston, WV to stop by my dad’s.  He then drove me and my step-mother three hours more up the road near Akron, Ohio.  It was a long trip with a lot of time to think.

I hadn’t known how sick my brother Jeff was.  After all, it was less than a month earlier that he made the announcement, with the proclamation that he “felt fine.”  The only symptoms he had at the time were some memory loss and eye problems.  His humor and attitude over the phone was always upbeat.  But then again, my family has never been one to share bad news with me.  Maybe because I’m the baby…maybe we’re all just that way.  Whatever reason, I came to realize that Jeff’s condition was pretty bad.

On the way up, Dad asked me to call Jeff’s wife, Debbie to let them know when we’d arrive.  It was then I found out that Jeff had just arrived home from the hospital.  He had been having complications from his medicine due to his diabetes and had spent two nights under observation.  (His balancing of diabetes and cancer was eventually to be his biggest challenge in coming weeks.)  Dad also made an eleventh-hour statement that I might not recognize Jeff when we arrived.

We arrived around dinner time.  Neighbors were just leaving after having brought over some food to eat.  I actually talked to the neighbors and Debbie before I saw Jeff.   I recognized him.  He was bloated from the steroids, his head was completely shaven, and he had a dazed expression, but he still had the same smiling eyes and mischievous smile.  He was still my brother.

We stayed for two nights.  Our “purpose” was to help winterize their yard…gather the lawn ornaments, sweep the deck, clean the flower pots, store the deck furniture…that kind of stuff.  But the truth is we just needed to visit.  We all knew what this trip was.  We (mostly Jeff and I) were hopeful that there would be a recovery…that he would fight and win.  It was just skin cancer, right?  Boy…did I learn otherwise.

Jeff’s attitude was nothing short of amazing.  We still shared quirky little inside jokes.  When we’d play cards and he lost the hand, he would joke that it didn’t take much to beat a man with cancer in his brain.  When he'd cough (the cancer had spread to his lungs as well) he'd say, "I hope I didn;t cough up any cnacer on you."  When there are moments that he obviously didn’t recognize me (which happened often that weekend), he would laugh and say “oops…my brain just farted.”   I don’t think my dad appreciated the humor, but I did.  It was something Jeff and I always shared and it was refreshing to witness.

At some point during the visit was when Jeff made a comment about wishing the black awareness ribbon could be as popular as the pink breast cancer awareness ribbon.  “I don’t have breast cancer, but all I can find is ‘pink stuff.’  I have melanoma…and people need to know.”  It was that moment, that VERY moment that I became aware of this disease.  I had no idea what I’d do (and I still don’t), but I promised him I’d do what I could to let people know about melanoma…what it can do…and how to prevent it.

On the morning before I left, Jeff and I went geocaching together.  I’ve mentioned geocaching here before, and I’m sure I’ll mention it again in the future.  It was one activity that probably drew us together more than anything else in years.  He had hidden one cache not far from his house, and I wanted to find it.  I wanted to make it my 300^th find…it deserved a “milestone” status.  He took me to several others that day…trying to remember the tricks to some, and laughing at me when I struggled to find a few.  I did indeed find his, as my 300^th.  We had a good time and shared a lot of geocaching stories while driving around.  Sadly, a week later, he had no recollection of our time together.  This awful disease was eating him alive that quickly.  Thank God I was smart enough to take a photo of us together that day…my favorite picture of us ever.

After returning to his house, we had a quick bite to eat and then loaded up dad’s car for our return trip to West Virginia.  We’re not a hugging family, but Jeff and I shared an awkward hug.  I told him I’d see him again and he made some joke about my dad’s driving and that I should be more concerned for my own life than his.  We smiled...never really shed a tear…but we knew.  We both knew.

Obviously I miss my brother, but I very much want to continue his words, “People Need to Know.”  People need to know…that they can prevent the occurrence of melanoma by making sun-smart choices.  People need to know the dangers of tanning and tanning beds.  People need to know that it’s important to get your skin checked by a dermatologist.  People need to know to learn your own body and know when something’s not right.  And people need to know that melanoma kills.  You, dear reader, most likely know all these things.  But you have to spread that knowledge to those who don’t…and let people know.

T-Shirt Update

UPDATE!

The T-shirts (and coffee mugs) are NOW AVAILABLE!  Please visit the store at www.zazzle.com/blackisthenewpink

When I first started this "Black is the New Pink" awareness campaign, I figured I'd just write a few words in a blog and that would be that.  But then I saw so many t-shirts announcing various causes and charities, so I thought a BITNP t-shirt would be a nice way to spread the word even more.  I bought a $2 black t-shirt from AC Moore and a pack of printable iron-on sheets from OfficeMax and made my first shirt.

Frankly, it looked like a home-made printable iron-on t-shirt, but others seemed to like the design and idea.  So I made another...this time with the BITNP header on the back and the black ribbon on the pink field on the front.  I liked this design...as did others, but it still had that iron-on look.

I had other ideas.  My "Skin Cancer IS Cancer" design seemed to get a lot of positive feedback as I've found it plastered proudly on many blogs and websites.  Unfornuately, I couldn't recreate that design successfully with an iron-on...I needed professional help.

In the meantime, I've been receiving inquiries..."Where can I get that shirt?"  "Are the t-shirts for sale?"

<sigh>

I was very frustrated.  I could think of no better way of spreading the BITMP message than with t-shirts, hats, or other such trinkets.  But frankly, I'm an engineer, dammit...not a marketing director.

I was told to visit CafePress...a website where one can set-up one's own online store.  They'd manufacture the merchandise, sell it, ship it, and offer a little commission, which I'd gladly forward onto MRF or the Skin Cancer Foundation.  It seemed like a winner to me, so I started to set it up.  I decied to go with my black design with the header on the back and the ribbon on the front.  I felt that this was the best design for mass appeal.  However, once I got it designed and set-up, CafePress assigned a price of $29.99.  Yikes!  I can't ask strangers to shell out nearly 30 bucks for such a shirt when I really don't know what the quality would be.  So, I decided to not pursue this particular site.

Ironically, I logged onto Blogger to share this evolution of the BITNP t-shirt, but was side-tracked by reading a couple of other blogs first.  And wouldn't you know it, on Chelsea's blog was an ad for VistaPint...a t-shirt and merchandise website.  I quickly submitted the same design and came up with a price of just over half of the other site!  Whoo hoo!  The only problem is, they don't seem to have an "online store" system set up like CafePress.  Not to be denied, I've emailed VistaPrint with my problem and hope to hear something positive soon.

Anyhow, my original intent was to petition you...the readers...and ask if any of you have any suggestions.  Personally, I don't have the time to hand-make every shirt...and I don't have the financial means to stock-pile and ship shirts myself.  The CafePress online store concept is ideal...but I can't very well charge $30 for a t-shirt...$20 maybe, but not $30.  Heck, I can get shoes cheaper than $30.  (Have I mentioned that I could use some fashion help?)

I look forward to your comments...and I really REALLY hope to have something soon so that you might be able to wear your BITNP message as much as I do!

What is "Black is the New Pink?"

No one wants to think about cancer.  It’s a nasty, ugly and cruel disease that, most likely, has affected someone you know.  No matter the type of cancer encountered, survival is a struggle and the prospect of death is very scary.  But thank goodness there is progress in the fight against cancer every day.  Still, cancer not something we want to think about often.  But I’m asking you to do so for just a minute.

When you think about cancer, what color do you think about?  Some of you may say “yellow” as you recall the successful Livestrong campaign inspired by Lance Armstrong.  But I would bet that many of you thought of the color pink.  Pink has become synonymous with breast cancer awareness and it’s been an extremely successful campaign.

In the past, I believe many people (mostly men) figured breast cancer was handled through a mastectomy.  “Geesh, so you lost a boob…but you’re all better now.”  Obviously, there was little awareness and perhaps little sympathy by the general public.  But over time, people have become wiser…and thanks to the successful pink awareness campaign, most people are highly aware of the seriousness of breast cancer. Thank goodness for that.

So why am I promoting the color black?  Well, black is the associated color with skin cancer.  “Ah yes…the cancer that can simply be removed by cutting off a bad mole, right?”  In many cases, that could very well be the treatment.  But there’s a far more serious version of skin cancer…a true killer and one of the fastest growing cancers out there: Melanoma.

My brother Jeff was diagnosed with Melanoma in 2004.  He had an ugly spot on his back and a biopsy confirmed the disease.  A few weeks later, he had it cut out.  That was simple…it was gone.  No more cancer.  Later in life, he would claim he was a cancer survivor and we’d all giggle a little.  After all, cancer survivors are people who go through horrendous radiation and chemotherapy.  They lose their hair.  That’s a cancer survivor…not someone who had a 10 minute mole extraction.  Right?

In the spring of 2010, my brother found a dry patch on his right cheek.  The Melanoma was back after six years.  Again, he had it removed through a chemo cream and minor surgery.  But a month later, another patch appeared.  Same treatment and this time it looked like he was a survivor once again (giggle).

In August of 2010, Jeff went to the doctor for a general visit following a stress test.  The doctor reported that his test results were great and asked if he had any questions or concerns.  My brother mentioned recent memory lapses and difficulty reading.   The doctor took notice and ordered him to have some tests run immediately.  The Melanoma was back…only this time it had metastasized to his brain and lungs.

In November of 2010, after three months of horrendous radiation and chemotherapy, Jeff died.  The Melanoma had the last giggle.

When we were kids, neither one of us were aware of skin cancer of any type.  Sunburns were common as we used a baby oil and iodine mixture to help establish a glistening tan.  We swam in the pool for hours and we played in the yard under the sun all day long.  We were blissfully and wonderfully unaware of the affects the sun could be having on our skin.

My brother was aware later in life.  Despite the teasing of his cancer survival, he took it quite seriously and became actively involved in the Relay For Life program in the Cleveland, Ohio area.  And towards the end of his life, he wore a black wrist band signifying Melanoma awareness.

In a similar way that breast cancer awareness had to overcome ignorance to be noticed, I can foresee Melanoma awareness undergoing the same issues.  So in an effort to coat-tail off the success of the fashionable pink color, I am launching an awareness campaign (as a promise to my brother) making Black the new Pink!  My hope is that people will become more aware of the dangers of skin cancer before scheduling a tanning appointment or venturing outdoors.  Awareness is the first step to eradicating this awful disease.

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.

Wear your black, because Black is the New Pink!