Hello...

I have to admit, I’ve been quiet on my blog lately because of a big crash.  The “high” was the recent AIM Walk in Charlotte which I still consider one of the best days of my life.  You have no idea how much love and respect I felt for people at the walk.  I hugged and shook the hands of warriors who were Stage 0 to Stage 4.  I felt overwhelming admiration for those who ran all 5K as well as to those who took the challenge in a wheelchair.  I felt humbled by these folks in ways I can’t begin to describe.  And that’s one reason that words have escaped me of late.

But the crash afterwards was hard.  After I came home, I felt like we had just won the Super Bowl.  The season was over…the victory was ours.  But then it occurred to me…in the 20 hours or so that I spent in Charlotte, 20 people in the US died of melanoma.  In the 11 days since the walk, 264 warriors have left us.  Melanoma never stops to celebrate.  It just keeps being the evil that it is.  And in the midst of the crash, I felt tired.

I have no right to feel that way since I don’t have melanoma.  I fight the awareness battle in memory of my brother, but that’s nowhere near the war that others fight every single moment.  Several folks couldn’t make the walk because melanoma was hitting them hard.  Some were in the hospital…some were sick at home…and some were way too financially depleted from the expense of the battle to make the trip to a far away city.  Melanoma attacks in so many ways and it doesn’t get tired.  Our most dedicated warriors get tired, but they fight on.  Despite the most daunting of obstacles, they fight on.  Jillian fights on.  I’m inspired by that.

Their fight reminds me of that of Inigo Montoya. 

 

 

 

He was the Spanish sword master in the movie “The Princess Bride.”  Inigo had a sense of vengeance to find the “man with six fingers” who had killed his father long ago.  For many years, he had rehearsed his greeting for the moment he would meet his father’s killer.

Hello.  My name is Inigo Montoya.  You killed my father.  Prepare to die.

Eventually, he finds his nemesis and confronts the six-fingered man with his line.  Unfortunately, Inigo is quickly stabbed with a dagger and about to suffer the same fate as his father.  When all seemed lost, Inigo mustered up enough energy to pull the knife out and repel a killing thrust of his enemy’s sword while muttering…

Hello.  My name is Inigo Montoya.  You killed my father.  Prepare to die.

Another thrust is rejected and Inigo repeats the words...twice.  The six-fingered man screams “Stop saying that!” do which Inigo responds…

HELLO!  My name is Inigo Montoya.  You killed my father.  Prepare to die.

Ultimately, the words prove prophetic and Inigo gets his revenge.  Despite having been injured and bleeding and left for dead, Inigo’s determination and strong will saw him through.

The efforts of those warriors that fight every second of their lives, and the determination of one movie character makes me want to stare melanoma right in the face and say…

Hello.  My name is Al Estep.  You killed my brother.  Prepare to die.

Post Script.  Please send your thoughts and prayer to Jillian as she fights the hardest part of her battle.  Her treatments have been deemed ineffective and her doctors (and family) can only hope for a miracle.  Jillian and her mom Susan have been advocates and inspiration for all those who are raising awareness.

Reflections on the Walk

 

So many blogs and Facebook postings have been written about this past weekend’s AIM Walk in Charlotte.  The Rev. Carol offers a great play-by-play while Chelsea shares some great photos.  Timna has an incredible blog about the emotions behind those amazing “Spirit Signs”…the decorated photos of some people we carried with us so that they could be with us.  I’ll try not to rehash much of what’s been shared by others, but I thought I’d share some of my reflections on the weekend.

·       The best way to describe the weekend was as a reunion among friends I’ve never met.  Despite others’ differing opinions, I’m usually pretty shy around folks I’ve never met.  But this past weekend was different.  Perhaps it’s just the way things are in this day and age of social media, but I felt as comfortable with everyone as I do my own family (maybe even more so!)

·       There were so many folks I didn’t meet that were in attendance.  After reading some of the aforementioned Facebook postings, I realized there were several folks at the walk (and even at the hotel lounge on Friday night) that I failed to talk to because I just didn’t realize who they were and vice versa.  Next time maybe we all need to wear nametags with our Facebook icons.  J

·       I was glad to meet so many on my “must meet” list.  I was especially happy that I asked Tara Gill to repeat her name 20 minutes or so after initial introductions in the loud bar.  She was one on my “must meet” list that almost got by without a hug.

·       Mark and Rich’s tutus.  What can I say?  Funny thing is, by the end of the day, it just seemed like their normal attire.

 

·       I loved the Rev. Carol’s prayer during the opening ceremonies.  I also loved that she encouraged folks to “get connected.”  Our voice online is a loud voice, but I realized that we were a minority in attendance at the walk.  Imagine if every person there (probably well over 500) blogged or at least shared sun-safety on their Facebook accounts!  Thanks for the reminder Rev….let’s hope others get connected.

·       One of the most emotional statements made at the walk was, “One day we’ll check out at the grocery store and the clerk will ask, ‘Would you like to donate a dollar to melanoma research?’”

·       Freedom Park is a beautiful park and great for such an event!

·       My GPS led me from the hotel to the park via a very swanky neighborhood…but not past a Starbucks.  I finally found it AFTER the walk when I traveled a different route.  And yes Chelsea, it looked like a house.

·       One of my highlights was not only carrying the Spirit Sign for Jennifer Christie (and others), but having one of Jennifer’s close friends approach me and ask where she could get one.  I gladly gave her mine and she seemed to light up with emotional pride.

 

·       The unexpected post-walk tailgate party in the Sunseeker RV (minus the Sun) was a real treat.  My family and I got to spend some time with our intriguing friend Donna with whom we shared the entire walk.  Our host also coaxed Chelsea into sharing a wine or two or… (how many times did the police circle the RV?).  I have to say it was a true pleasure to meet Chelsea in such a sit-down-and-talk environment.  She was exactly as I imagined…funny, bright, and gracious.  She may have been wearing a tiara, but she was no “diva.”  She, and her family which joined in later (yes, 9 people total in an RV at once) couldn’t be nicer or more genuine folks that anyone would want to know.

·       It was incredible to walk among people who “get it.”  I think each one of us in the melanoma community feel a lot of frustration when we share our stories and thoughts with others who don’t care to really listen.  Over this past weekend, we all got it.  We all spouted off the facts and figures.  We all shared the joys of medical triumph and the sorrow of lost loved ones.  We all came together with a shared mindset…and for me personally, it gave me the much needed boost to keep my campaign going.  I’m not alone…you’re not alone.  WE will make a difference!

·       Finally, as amazing as this event was, it shouldn’t be considered “special.”  At least not more special than any other.  Don’t get me wrong, it was incredible to have this reunion of friends we never met.  It had a near miraculous feel about it.  There were more hugs and smiles shared than I can recall in a long, long time.  But this AIM walk is one of many…and AIM is one of several organizations that host such events.  EVERY walk is special.  Each event raises funds and awareness. Don’t let all the blogs and Facebook posts make you think that this was the ONLY event in which to participate.  Hardly.  It’s one of many, and I encourage everyone to find such an event near you.  AIM.  MRF.  Miles Against Melanoma.  Outrun the Sun.  Each one helps our campaign to raise awareness. 

AIM's Anne

 

I wrote my very first blog post for Black is the New Pink back on March 4, 2011.  I wasn’t sure what type of response, if any, I would receive.  Ten days later, I received my very first comment.  It read as follows:

Great post!  I was diagnosed with melanoma in Dec 2010 and knew little about it before then.  Unfortunately, I had to learn a lot quickly and was so saddened by what I read, especially about the disease in its later stages.  It’s a horrible cancer that deserves more attention, funding, etc.  I am in Charlotte so keep me posted about any events going on in NC!  I’m looking to become more involved in melanoma awareness as well.

-Anne

That comment was written by known other than Anne Bowman, current AIM Charlotte Chapter President whose organization just pulled off another successful AIM for a Cure Melanoma Walk.

Anne, I think well over 400 people and $60,000 in funds raised for melanoma today says that your search for involvement has paid off enormously.

Congratulations!

Moments

I believe that every moment has an effect on every other moment of your life.  The fact that I just corrected a typo (one of many no doubt) may not have any significant impact to my future, but I’m convinced that action and all others lead to certain pivotal events.

For instance, I’ve always joked (sorta) that had my dad not taken me and my brother to a WVU football game when I was a kid, my children wouldn’t be eating their breakfast right now.  How so?  My family had a few hours to kill before the game, so we walked around town.  This is back when the football stadium was tucked between two hills in the downtown campus area and the term “tailgating” was still years away.  My brother and I were both in awe of the campus and student center.  The electricity of the game itself had a magic all its own.  I decided right then that I would attend college at WVU.  Fast forward to many years later when the job I got out of college lead me to Raleigh, North Carolina.   A small group of local WVU Alumni decided to form a local chapter and we gathered at Chi Chi’s to watch a Mountaineer football game on TV.  While there, I met a girl who eventually became my wife, which of course led to the two kids chowing down on waffles right now.  All because my dad wanted to go see a game.

Some moments aren’t so pleasant, but they still have a profound effect.

Two years ago today, my dad called me as I was driving home from work.  I knew what the call was about before he even spoke.  My brother Jeff had passed away an hour earlier after a horrid battle against melanoma.  My mind was reeling and I never had one thought of how that moment would shape my life.  But it did.  It led me to ask questions.  What was melanoma?  How can someone get a clean bill of health in early August (except for a complaint of blurred vision and memory lapses) and be dead in just three months?  Was it possible that I could get melanoma?  If so, was there a way to prevent it?

I spent many evenings in my crowded little computer room reading all sorts of websites.  I browsed through a large variety of information, but stuck mostly with the traditional and respected resources such as the Skin Cancer Foundation, AIM at Melanoma, and the Melanoma Research Foundation.  I was receiving technical answers, but I was still missing something….something inside.  I started to read the site forums, and contacted one or two folks that had suffered from the disease, and they in turn invited me to read their blogs.  (Thank you Andrea Heitker, aka, Melanoma Girl).  I was once told that in order to find something inside, you had to free it, so I started to write.

I not only wrote about my thoughts and feelings about melanoma, I shared the new knowledge that I discovered.  When new medicines were approved by the FDA, I shared the news on Facebook and within my blog.  When I felt a tug of sadness while missing my brother, I shared it.  And with absolutely no intention of establishing an audience, people started to listen.  As they listened, they shared…and I started to listen.  Before I knew it, I was a part of a community with one common bond.  We had all somehow been touched my melanoma.

I sit here now, two years after my brother’s death, still seeking and sharing information from this cluttered room.  I still feel those tugs of sadness, especially on this day.  I also marvel at the path that was forged from the unfortunate event of Jeff’s death.  Don’t get me wrong, I would trade every good moment over the past two years to have my brother alive today.   But the moment did happen, and here I am today.

Tomorrow, I’ll be traveling to meet some of the folks within the melanoma community.  We’ll all be participating together on Saturday in a walk to raise money for melanoma research and awareness.  Fighting the disease is the goal…walking with these incredible people will be a great side benefit.  As one (yet to be met) friend stated, “You’ll see a little bit of everything…running, walking, sitting, hugging, and crying!”  I would be willing to bet plenty of smiles, too.

Every moment leads to another moment.  Every action has a reaction.  Every decision defines your future.  One tragic moment that occurred two years ago today has led me with great anticipation to a joyous event in two days.   Who knows how many incredible moments will be forged for the future this weekend?

I miss you Jeff.  And thank you.

What Happens to the Tanning Beds?

Sometime last year, I shared that our family hair stylist closed downthe tanning portion of their business.  Two tanning beds, one tanning booth, and one leg tanner were shut down!  However, the machines have remained in place for over a year.  I finally decided to ask why they still haunted the back section of the building (although gathering dust rather than causing cancer).  I was told that the owner was having trouble getting rid of the machines.  Apparently, there just is not as many people starting up tanning businesses as there used to be.  I suppose this is a cause for celebration.  Or caution.

I wondered where one tries to sell unwanted goods.  In the case of personal garage sales, the newspaper classified would be the logical choice.  But then again, classified ads are becoming a thing of the past thanks to internet sites such as Craigslist.  So, I decided to take a peek and see if maybe closing tanning salons were offloading their equipment on Craigslist.

Most definitely yes.  Here’s a sample of today’s ads:

 

 

In short, it looks like at least one tanning bed is posted per day in the Raleigh area alone.  When I dug in a little more, the prices range from a few hundred to a couple thousand dollars.  Overall, the cost was relatively cheap compared to new units.

Out of curiosity, I decided to respond to a few of ads.  I used an alias name (Mel Carson) and mentioned that I was shopping for a tanning bed for my daughter and asked if there were any regulations regarding radiation control.  (Yeah, I felt dirty typing the emails)  Here’s the most detailed answer I received:

There are no regulations if you have a personal tanning bed in your home. Of course, you know to never exceed 20 minutes in a tanning bed in one day. The bed does have a 20 minute timer on it and a built in fan. You can set the time for as little as 2 minutes to 20 minutes. Always start out slow, usually 7 minutes to see your skin reaction. Then gradually increase to the full 20 minute time frame. It takes a 220 amp for hookup. I use tanning bed cleaning solution that I buy at Sally's beauty supply store, it's really cheap.  Me and my daughters have really enjoyed it, but they are older now and have new interests, lol! The bed really is good, we have one bulb out but it really hasn't made any difference with tanning. Bulbs are ordered on line when you replace them. I would just keep tanning until I needed more replaced which should be a while!

I was pleased that this person mentioned time limits and some sense of caution, but very displeased to read that her daughters were “older now and have new interests.”  To me, this says her daughters were in their teens, maybe even early teens when they used the bed.  Not good.  I was also surprised to read that Sally’s sells the tanning bed cleaning solution.  Tsk tsk.  But I digress.

I was suspicious about there being no regulations for home tanning beds, so I contacted the North Carolina Radiation Section of the Division of Health Services…the people who regulate tanning salons.  They confirmed that there are no regulations for those individuals who own tanning equipment for personal use.

This doesn’t surprise me.  Despite regulations on cigarette and wine sales, it’s legal to make your own at home for personal use without any type of home inspection.  I’m not opposed to that at all…I once made my own beer from a kit.  It tasted like crap, but I made it.  But my concern is that folks who are able to buy these industrial tanning beds for pennies on the dollar will not properly monitor their own use.  Also, they’ll not properly maintain the equipment causing all kinds of potential risks to their own health.

The point of this post is not to warn folks against buying used tanning beds. (Those who will do so don’t read this blog anyhow).  While we’re advocating the elimination of tanning beds (at least preventing use by minors), let’s not forget that raising awareness about the dangers should be our most important mission.  The only way to prevent the redistribution of the cancer coffins is to educate folks as to why such usage is a bad idea.  Changing a cultural mindset is a daunting and frustrating task that could take years, but it’s a task well worth taking on.