Where the Boys Aren't

When I started this blog and my Facebook page some three or four months ago, I remember reading other pages to get ideas and inspiration.  I recall that one FB page (perhaps Melanoma Girl’s) had over 400 “Likes!”  I was so impressed…not by the numbers, but by the number of opportunities she had to spread her message.  Every time she’d mention a thought about using sunscreen, over 400 people might read it…and they might share it…and so on and so on.  At the time, I was struggling and hoping to reach 25 “Likes” by emailing and messaging friends on my personal Facebook.  (25 “Likes” allows one to create a shorter URL…mine being www.facebook.com/fightmelanoma) 

This week, I received my 400^th “like.”  I’m literally shocked…and thrilled.  Again, it’s not about the numbers, but about the opportunities for people to read the articles and links I share.  I’m sure nowhere near 400 follow my thoughts on a daily basis, but every person that does read helps to spread the word.

Since I’m a bit of a data geek, I decided to take a closer look at the numbers.  I discovered that the people that “like” my page live all across this country…and beyond.  I’m not sure how many states, but quite a few.  Many countries are represented as well, such as Canada, Australia (cursed leader of the melanoma world), England, Germany and the Netherlands.   However, one statistic stood out among other.  Over 93% of those that “Liked” my page are female!

So what does this mean?  Does it mean that men don’t surf Facebook?  Does it mean that men don’t research melanoma online?  Or do they simply not want to face it?  I have no idea…I’m a male that’s become a bit paranoid and tend to over-surf every ailment I have.  I think I’m the exception.

Men accounted for nearly two thirds of the deaths by melanoma in 2011 (one I knew personally).  Melanoma can be expected to affect one in every 39 men in their lifetime while women are affected at a rate of one in 58.  Men over 50 are twice as likely to develop and die from melanoma when compared with women.  By these stats, it seems that men should really being taking a greater interest in what’s being said…far more than only seven percent of the population.

Maybe that’s the connection.  Men are either not listening or they’re stubborn about seeing a doctor about “that spot.”  “Eh, I’ll see if it goes away.”  “Working in the sun is good for me...no way it’s gonna kill me.”  “It’s just a spot...the doc is just going to cut it out and leave a scar anyway…just leave it.”

Guys, as much as my ego loves the attention from over 370 women from all over the world, it’s time we start to wake up and take skin cancer and melanoma seriously.  You don’t have to “like” my Facebook page, or even read my blog, but please take notice and get educated somewhere.  And spread the word to your buddies.

Pale Skin is In...Thoughts of Tina



Tina and her daughter Teya



Just found your blog. I think you are doing a wonderful job honoring your brother and as a stage IV melanoma survivor I appreciate the awareness you are creating. Also, I love the name of your blog. I too hope that one day melanoma awareness is just as great as breast. Keep up the good work!

These were the first words that Tina Sullivan shared with me on April 10, 2011.  Others had shared comments before, but Tina continued to offer up praise and kind words and became a loyal reader…even as her own battle was going through its ups and downs.  Her encouragement was what really lifted BITNP off the ground…it’s what made me want to continue writing about something that I was really only learning about as an observer. 

She shared stories of struggle and hope with me and many others through her blog, “Pale Skin Is In”.  I learned through her words and the words of her followers that Tina was a strong and beautiful person.  And she had a great support team of family and friends.  Even when Tina became so ill that she was unable to write, her husband continued posting updates of her condition…as well as the occasional reminder to continue the fight against melanoma.  I can’t help but imagine that she demanded (sweetly) to keep the fight going as she fought her own battle.

Tina passed away today.  Her husband Todd shared the following:

It is with a heavy heart and great sadness that I let you know Tina's journey has ended. She went peacefully this afternoon, and was surrounded by family. Tina's story of her battle with melanoma touched many people, and was an inspiration to all - she will be missed dearly...

Very true. 

As I’ve said before, melanoma warriors have a new angel watching over and leading the battle.  An angel indeed.

Getting a Grip on Sunscreen Safety

I read a post over at the Hotel Melanoma that commented on bad golf, and that reminded me of a bad experience I had with sunscreen recently.  Believe it or not, sunscreen almost led to others being seriously hurt.  Before all the melanoma warriors and anti-tanners jump all over me…read on.  I’m still just as adamant about supporting sun safety and skin cancer awareness.

This past Saturday, my wife and I surprised the kids with a trip to the local driving range.  They’ve been wanting to hit some balls with “real golf clubs’ for a while, and it had been almost a year since I’d grabbed my own clubs, so we figured this would be a good outing for all.

We arrived around 5:00…after the peak sun hours, but the temperature was still in the 90’s and there was not a cloud in the sky.  It was a beautiful day or golf.  I grabbed three clubs from my bag: a wedge, a mid-range iron, and a driver.  We paid for a couple bucket of balls and picked out a few stock clubs for the rest of the family.  My daughter is a leftie, so she was stuck with a kid’s iron while my right-handed son was given a child’s driver.

I showed my son the proper grip, etc. and he hit a beautiful shot.  The boy’s got a natural swing!  My daughter, who’s more athletic, was a bit more challenging to teach because of the “mirror image” method of teaching her left-handed swing.  Eventually, both were swinging and hitting and having a good time.  After a quick lesson with my wife, I finally got to hit a few.

Now I’ve had some major tendonitis in my right shoulder for a while, so I wasn’t sure how my swing would be.  I hit some balls gingerly with the wedge at first and everything felt fine.  Then I hit the iron equally well.  As I reached for my driver, my daughter (ever the vigilant one) asked if I had brought along sunscreen.  She was right…it had been since before noon that I last applied it and the sun was still pretty bright.  So I went back to the car to grab the spray and lotion.

We typically use spray for the arms, legs, and neck.  We use the lotion for the face and ears as my kids squirm away from the spray.  They do from the lotion as well, but I can usually slop on enough to do the trick.  This routine was repeated again until the entire family was glistening in protection.

With sun-safety assured, I returned to my golf swing and grabbed the driver.  I heard my daughter mutter to her brother, “Hey…daddy’s got the big club now!”  So of course, I decide to give this ball a good whack for showmanship.  A steady backswing followed by a strong flowing swing and “WHACK!”

My ball didn’t fly as far as I had hoped, but my disappointment in driving distance was quickly overshadowed by the realization that I no longer had a club in my sunscreen-slickened hands!  My kids exclaimed “WOW!” as my wife asked what the heck I was doing!  Fear struck through me as I realized my driver was hurtling through the air somewhere, yet I didn’t know where.  I was relieved to see that it wasn’t heading into the range…the thought of informing the groundskeeper to halt other golfers while I walked into the field to grab my club was an embarrassing proposition.  But the concern raised  as I realized that the club was most likely heading towards other practicing golfers!

I turned around in time to see it come crashing back to earth from about 30 feet up…luckily well behind mostly oblivious golfers.  My family was rolling on the ground, literally, with laughter as I meandered to the wayward driver and discretely picked it up and walked back.  A gentleman who was a few feet away merely said, “that’s one helluva swing you got there.”

So let this be a reminder to all who use and apply sunscreen spray and lotion.  Bring a towel.  The sunscreen WILL save your life…and the towel may very well save another’s.

Ask For It and It May Come!

Last month, I wrote a post called “What’s the UV Index Where You Live?”  Within, I wrote “I emailed one local TV station to ask why they don’t post the UV index…once I hear something, I’ll post their response.”  Guess what?  They responded.

Well, at first they didn’t, but I noticed over the last week that they started posting the UV index:

© 2011, Capitol Broadcasting Company, Inc.

I then found a video report on their website which I also posted on my Facebook page:  http://www.wral.com/lifestyles/healthteam/video/9869796/#/vid9869796

I just found it very ironic that they started posting the UV index so soon after I wrote my email, so I went ahead and emailed them again through their website.  This time, they responded as such:

Dear Alan:

Thank you for your e-mail now and from the recent past.

As you can tell, we take all suggestions seriously. I am pleased we are able to provide this important information.

Sincerely,

Steve

Steven D. Hammel

Vice President & General Manager

WRAL-TV

Cool! 

It’s these little things that make a big difference.  I never really thought my inquiry would lead to a true change, but it just goes to show you that merely asking or speaking up CAN make a difference.  So I encourage you to do the same.  Suggest to your local TV station or newspaper to do a piece on Melanoma, inform them of the “Dear 16-Year-Old Me” video, or ask them to post the UV Index every day. 

Whatever it is, ask for it. 

Caching and Remembering

As I’ve browsed the skin cancer blogosphere and roamed the halls at the Hotel Melanoma, I’ve encountered two types of folks.  The first are those who share their personal experiences with the disease.  The second are folks who share their thoughts and awareness campaigns in honor or memory of a loved one that battled melanoma.  My blog and Jodi’s 5K run are dedicated to those who have passed and we intend to carry on their messages.  We are inspired by our loved ones ever day.  But some days, we simply just miss them.  Today was such a day for me.

About two years ago, I started a hobby, activity… I’m not sure how one might categorize it.  Anyhow, I started to geocache.  In simple terms, geocaching is the act of using one’s GPS to locate items hidden by others.  The coordinates are listed in geocaching.com (where else?) along with a description and an online log of all the people who have visited.  You can log on to the site if you’re interested in more detail.  It’s rather neat in that there are thousands of hidden “caches” (many containing cheap trinkets…all containing a log sheet) all over the place.  For those familiar with the Sloan-Kettering Cancer Center in NY, there’s a cache hidden at E 70^th St between 1^st Avenue and York Avenue.  But I digress.

A couple of months after I started geocaching, I told my brother about it.  Jeff is seven years older than I, so we never really got into the same things.  And once we both were well into adulthood, we simply lived too far away from one another.  He last lived near Akron, OH and I live near Raleigh, NC.  Because of the age and physical distance, we really never talked but once a month or so on the phone, if that.  Anyhow, he took great interest in geocaching, and before you know it, he and I were calling each other weekly to describe our latest caching adventures.   He became the one person I looked forward to sharing such stories with and I believe he felt the same.  Sure, we’d share with our wives, but only Jeff and I really understood one another regarding this hobby.  This silly high-tech scavenger hunt really brought us closer together.

I didn’t stop geocaching after Jeff died, but I was never as enthused about it.  I enjoy going out into the woods or scanning hiding places in office parks (yes, we have our fair share of encounters with “secuirity”).  Earlier this year, I even got three “first-to-finds” in one day…a difficult feat since many cachers are devoted simply to being the first to make a find.  When I found my third, I grabbed my cell phone and started to dial my brother.  Then I realized he’d been gone for 4 months. 

Damn.

I hadn’t been caching recently until this past Saturday.  I went to the aforementioned 5K walk/run in the morning, and then decided to attend a geocaching event close by afterwards.  Two events closely linked to my brother.  I was inspired to go find a couple of caches as I drove home…just for Jeff.  Today, I saw where a few new caches were hidden along my commute route.  I decided to stop by one and look.  I found myself at a dead-end road with plenty of trees surrounding the area.  I carefully trekked through the woods as I stared at my GPS, carefully avoiding spider webs and tick-infested trees.  I felt I was zeroing in when I heard a loud buzzing.  A wasp was right next to my face…and I freaked out.  Like Indiana Jones running away from the ball, I flew through the brush and spider webs and back to my car.  And then it occurred to me…there are spiders on them thar webs!  So I followed my out-of-woods sprint with the “there’s a spider on me” dance.  Thank goodness the area was isolated or else I would have surely been seen as totally crazy.  Once my heart-rate settled, I saw the humor in it all, I started to laugh.  Another geocaching adventure…and I instinctively reached for my cell phone.

Damn.

Melanoma has a devastating effect on those it invades.  Blogs written by those who have suffered (or are suffering) through the disease's attacks are an incredible read and very eye-opening.  But also know that it's not important just to protect yourself from melanoma, it's important to protect your loved ones.  Don't be afraid to remind a relative or friend to apply sunscreen.  Don't be too shy to mention that their visit to a tanning salon is a really bad idea.  Losing a loved one to melanoma has lasting effects on you as well.

One footnote to this is that when one finds a cache, one goes back online and logs the find with any comments regarding the condition of the cache or any side stories (such as a notice that there may be wasps in the area).  Ever since Jeff’s passing, I’ve written my log entries with the following closing, “Thanks for placing this cache, and don’t forget to wear your sunscreen!”  It’s my way of bringing Jeff along on another adventure.

Denny's Challenge

This past Saturday, I participated in my first Miles for Melanoma event.  Denny’s Challenge is a 5K run/walk to raise money for melanoma research, donated to the Melanoma Research Foundation.  This year’s event raised around $6500, beating last year’s inaugural amount of $5000.  This is an incredible accomplishment from a small, but growing event.

The origin of this event is a pretty neat story.  Let me share it directly from the event website, as written by her daughter Jodi:

At the age of 59, my father-Denny Neely, lost his valiant battle against cancer.  In January 2008 he was diagnosed with stage 4 metastatic melanoma.  An eight centimeter tumor was found situated between his aorta, stomach and pancreas- survival on average with this diagnosis is 3 months. My father began clinical trials with some of the best doctors at the Hillman Cancer Institute in Pittsburgh, PA.  An uphill battle from the start and through many setbacks; my father remained optimistic, never gave up hope and promised to fight this disease all the way to the end. 

On July 3rd of 2009, 18 months into the fight, the tumor had grown, multiplied, attached, and attacked his vital organs. As he lay in his hospice bed, seeing in all of our faces that he was near the end, he challenged all of us in the room to a fifty mile race. The room laughed because we knew he was serious. Here’s a man that at this point could barely walk, could barely talk calling his shot like a thin, frail, Babe Ruth.

My dad was always challenging us to dig a little deeper in the storehouse, in the gut, in the desire to achieve. Today we extend that challenge to you.  The 1^st sixteen individuals to finish the Denny’s Challenge 5k, together will have totaled fifty miles fulfilling the last goal of a fighting man.  So call your shot, dig deep and run, walk or give toward Denny’s fifty mile goal in his memory and to raise money so we will one day find a cure for melanoma.

So, I took that challenge…knowing I had no chance whatsoever to finish in the top 16.  But I showed up this past Saturday morning with my BITNP T-shirt (the new white colored version considering the heat of the day) and my best pair of walking shoes. 



Sportin' the new shirt



One thing you might not know about me is that I’m quite shy.  I’m much more outspoken with fingertips to keyboard than I am face-to-face.  So I was basically a wall-flower as I watched everyone else stretch and prepare for the run.  Wait, this is a walk too, right?  I was a little intimidated by groups of people obviously from the same running clubs, and by pulse-measuring, ostrich-waltzing runners going through their pre-race routine.  Yet, when it was time to start, I still took my place on the field, heard the horn blow to start the race, and started hoofing.

This was my view within seconds:

Almost last...and yes, that's a toddler beating me!

Oh, I wasn’t last…just in the bottom 1%.  But you know what?  I didn’t care and I had an incredible time.  I caught up with a lady named Sue that works with the aforementioned Jodi.  I learned a lot about Jodi’s cause, and was very impressed with her drive to get the word out about melanoma.  A couple of other folks came up behind us…they turned out to be Denny’s brother Rich and his wife Rose.  I was impressed that they flew all the way from New Mexico to enter this event.  I learned a little more about Denny…and all during an incredible, healthy walk through a wonderful tree-lined course with good company and conversation.  It didn’t feel like a race at all, but I felt like I was on a winning team.

We finished in just under an hour…in time to see the 16 medals given to the top finishers, and to hear Jodi give her final thanks to all that participated, along with one final reminder about sun-safety and melanoma. 



Jodi Neely Wiley - Denny's Daughter



Yeah, there were runners there that were there for the times and medals, but the real winner was Jodi who continues her father’s wish and message.

I encourage everyone to participate in a Miles for Melanoma event.  There’s another in the Raleigh area in October…I’ll definitely be attending and perhaps it will be a little cooler.  I’m sure there will be one near you.

Eric's Story

I want to share the story of Eric Sizemore.  No, I'm not going to write it, I'm merely sharing it.  He and his wife will actually tell it to you.

While I don’t know Eric or his wife Jill, they seem like pretty ordinary people.  There seems to be nothing truly spectacular about them…nice people that you’d like to have for a neighbor and perhaps call friends.  Unfortunately, Eric has advanced melanoma that has spread throughout his body.  Sadly, too many people have experienced the same battle as Eric, whether through one’s personal fight, or through witnessing a family member or friend.  Eric’s experience reminds me so much of my brother’s, it’s sometimes gives me the willies.

What makes Eric’s story special is that he is sharing it.  I know…many others have written blogs about their melanoma battle, but he’s sharing even more.  He and his wife, Jill started a blog at http://www.melanomasucks.blogspot.com/ in January, 2010.  The postings were sporadic, but very effective as they showed the progression of disease on Eric’s leg.  The postings stopped around April, 2011, but they started to post videos updates in March as his melanoma overtook his body…from the small pencil eraser-sized mole on his leg to the “too numerous” tumors in his legs, spine and throughout his body.  This is what makes Eric stand-out.  His videos are real, raw, tender and sometimes very difficult to watch.  But his story needs to be seen and shared.  I guarantee that anyone that watches the full series of his videos (13 in all thus far…I think) won’t go away feeling the same about melanoma.  Please watch Eric’s video series.  And send a prayer his way for a miraculous recovery.

Remembering Jeff...Again



Last (and Best) Photo of Me and Jeff...September, 2010



I wrote this piece on my personal blog over seven months ago.  I suppose it’s somewhat of a eulogy of my brother.  There are some aspects you might not understand, not having known the two of us...such as the golf ball and geocaching...but I think you’ll get the gist of his life and our relationship by reading this.  I’m reposting it because today, July 1, is my brother’s 56^th birthday.  It’s also my twins’ 9^th birthday, so while I mourn my brother’s passing, I experience great joy (and nervousness) every July 1 as I watch my children eagerly approach their “pre-teen” years.  My day will mostly be devoted to them, but since my awareness campaign and this blog have been dedicated to my brother, I thought I’d honor Jeff this one moment by sharing my words from last November.

My brother Jeff Estep passed away last night (November 15, 2010) after a brief bout with Melanoma that metastasized to his brain and lungs. He left us far too soon.
I can’t really compose my thoughts at the moment…but I thought typing random memories and thoughts may help me a bit. There seems like so few…and yet so many, if that makes sense. While I stop to think of specific memories about Jeff, I have trouble coming up with much at all. But then something happens and a memory will hit me like a ton of bricks.
One such occurrence was as I was putting the dishes away the other evening. I grabbed a paper towel that I had bread sitting upon and I suddenly recalled that it was Jeff that taught me how to fold up a paper napkin and not spill all the crumbs (corners in first). Of all the things to remember, that’s one specific lesson I remember.
Christmas…oh my. As we prepare the house for Christmas decorations, many memories flood on in. He and Debbie love Christmas so very, very much. Even when I visited in September, there was a Christmas tree in Debbie’s dressing room. It’ll be hard to have Christmas without Jeff coming to mind. And I know that Jeff wants us all to enjoy Christmas…not to shed a tear for losing him, but cast a smile on the beauty of the season…and the beauty his life left behind.
I remember the Boy Scout Indian Hand signals we used to use as kids. Our plan was to get up on early, and I mean EARLY, on Christmas morning to see what Santa had left behind. We’d not talk, but walk stealthily through the darkness with flashlights while communicating with Indian hand signals learned from the Boy Scout handbook. Of course, upon first sight of the Christmas tree and decorations, we forgot all hand signals and made a bigger racket than we did the year before.
We had a couple Christmas traditions...one that I’ll keep to myself. It was very juvenile and sophomoric…but it was ours. I know Jeff is smiling when I mention it.
The golf ball. What a wonderful tradition that was. Exchanged over several years, we would alternately give this old Elmer Fike golf ball to one another for the holidays. Until my last attempt pretty much destroyed the ball, we would both look forward to either receiving the ball, or the delight in watching the other receive. It was a tradition followed by many…and enjoyed so much by the two of us.
The two of us. We were seven years apart. When I enjoyed Bugs Bunny, he was into American Bandstand. When I started watching Dick Clark, he was back to watching cartoons. He entered WVU as I was still in elementary school. Eventually I also attended WVU…and a very large reason I did so was because of witnessing Jeff’s experiences in college. It wasn’t the partying…and there was some. It was just the whole experience and how I witnessed my brother grow up from a geeky acne-faced teen to a responsible young man. Whether he knew it or not, watching that was as much of a mentorship as I ever had.
He so loved that college. One of the highlights of his last couple months was attending a game and having his cousin, Coach Dunlap, take him on a tour of the locker room and inner sanctum of the team. I’d never heard him talk in such a giddy way than he did about that day.
I take that back. There was another time, at WVU that he was more excited and full of life. That’s when he met and fell in love with Debbie. He could never have asked for a better partner than Debbie. The love they share is incredible. And once again, showing his love and devotion became another standard I hoped to follow.
Like I said, we were 7 years apart, so we were never really “close” close. We were brothers, but not the call-every-day type. It’s just how we were wired. Or maybe it’s perhaps how I’m wired. Regardless, we still were brothers. And when he lost his job in Florida several years ago and lived with me in NC for a short while, that’s the first time we really shared our brotherhood. We shared secrets of growing up…stories of our experiences. While that was a tough time for Jeff and Debbie, it was a very special time for me.
Recently, Jeff and I shared the hobby of geocaching. I’m not sure why, but that hobby brought us closer than I ever recall. We actually started to become a pair of brothers that would call one another often…just to share stories of the hobby and, of course, toss in a few tidbits about life as well. The last photo I ever had taken with Jeff was when we went geocaching together in September. That’s most definitely my favorite photo of us, ever.
He was with me when I got my first birdie in golf, and he was the obvious choice for Best Man in my wedding. But I guess the greatest legacy I have of my brother is his shared birthday with my kids. How ironic that they were both born on his 47th birthday. They’re a product of my love for my wife Kim…and yet a reminder, even once a year, for the love I have for my big brother.
One final memory I'd like to share, although I apologize for the dark humor.  When we were kids, we played cops and robbers or some variation of the game.  Whoever played the robber would ultimately get shot and play out a death scene.  Every time, the robber would mutter, "The treasure....the treasure is...the treasure is hidden in the....." and then die.  My father told me that on Jeff's real death bed, that my brother muttered something illegible three times before taking his last breath.  Most likely he told Debbie that he loved her, but a part of me thinks that maybe, just maybe, he was playing that game one last time.  That was his sense of humor.  And I think he's safe with his treasure.
I do love you Jeffrey…and I’ll miss you. God bless you.