Wednesday, December 10, 2014

"Only Good Things Can Come From That"


This evening (December 10, 2014) I was fortunate enough to attend the 2014 GSK Melanoma Virtual Summit.  This was an online gathering of bloggers and melanoma advocates and organizations to discuss recent developments in the fight against melanoma.   I’ll admit, I wasn’t very good at keeping notes, so what I share here will be a very summarized and abbreviated account of the 90 minute session.

First of all, we all introduced ourselves.  I was thrilled to see the faces of familiar friends and “meet” those I’ve followed for a few years.  I’ll share respective blog and websites at the end of this piece.  There were also representatives from various melanoma advocacy groups (see the list at the end).

First on the agenda was a discussion of a patient’s perception during initial diagnosis.  GSK, as a drug manufacturer, interacts primarily with doctors and medical facilities and not so much actual patients.  They’ve been investigating the patient point of view more and presented some insights.  The most riveting part of this section of the summit was not GSK’s presentation, but the opportunity for melanoma warriors/survivors to tell their tale.  My friends Timna and Rich shared their reactions and experience with initial diagnosis.  It was encouraging to see a representative of the “Big Pharma” corporate healthcare world (GSK) listen to real human stories and emotions.

The next segment dealt with updates on recent policies related to melanoma.  July’s “Call to Action” by the Surgeon General emphasized.  This is not a federally funded venture, but a true call to action in local communities.  Organize the building of shaded areas in parks.  Increase awareness of UV dangers.  Promote sun-safe policies in schools and in the community.  Participate in fund-raising and awareness-raising activities.  Support legislation to ban the use of tanning beds for minors.  While it may have been the same message from July, it was an effort to recharge our efforts.

Others also presented updates on the recently signed Sunscreen Innovation Act.  Now, new formulations of sunscreen will be expedited for FDA approval.  This will introduce a slew of sunscreen formulas to the United States that already exist in other countries.  I asked if the increased options in sunscreen might help reduce the price of sunscreen…perhaps through increased competition.  Unfortunately, this could not be predicted or known at this time.

Additionally, there was discussion about the FDA Guidelines on sun lamps (warning stickers and reclassification of tanning beds), funding for various research, and details about research on genetic testing, specifically on those melanoma patients not fortunate enough to have the B-RAF gene (as there is no effective treatment for this 50% of the melanoma patient population).  This last effort is lead by the SU2C/MRA Melanoma Dream Team.  In addition, there was a report on the Brain Mets tissue bank to help research brain metastasis.  Over half of all melanoma deaths occur from brain metastasis.  Count my brother Jeff as one of those.

The summit closed with a brief impromptu discussion about pediatric melanoma and the apparent increase in such cases.  It was noted by one participant that 10 years ago, melanoma research concentrated on men in the 50’s.  Now, the research is heading to younger ages…20’s and now even to pediatric patients.  It’s a disturbing trend.

With the upcoming merger/acquisition/whatever of GSK with Novartis, there’s some concern that this summit will continue going forward.  The GSK group seemed confident that it will continue.  I certainly hope so.  Does this group of bloggers and advocates create new and innovative “legislation” against melanoma?  No.  But as my friend Rich commented, “The value of these things is to establish and build personal connections and relationships in the melanoma advocacy community.  Only good things can come from that.”


Thank you to the following organizations for your participation:

AIM at Melanoma – aimatmelanoma.org
Melanoma International Foundation – melanomainternational.org
Melanoma Research Alliance – curemelanoma.org
Melanoma Research Foundation – melamoma.org
Skin Cancer Foundation – skincancer.org
Skin of Steel – skinofsteel.org

The following is a list of attending bloggers as supplied by the GSK organizers.  My apologies for any that attended but were not on the provided list or that I simply forgot to type (it’s late at night…lol):

Steve and Jennifer “Who Dat” Martin - http://martinfamilyjourney.blogspot.com/
Chelsea Price Dawson (and her little dog, too) - http://adventurewithmelanoma.blogspot.com/

Thursday, November 27, 2014

Some Time Away

Happy Thanksgiving!

I’ve taken some time off from blog writing.  While my responsibilities at work contributed to my reduced personal time and online absence, the truth is I decided to simply take a break.  Some of it was writer’s block but a lot of it was to get away from melanoma for a while.

This started at the first of the month when I spent an amazing birthday weekend with family.  My dad and his wife headed on their annual migration from West Virginia to Florida and decided to spend a few days with my sister-in-law Debbie.  She lives a few hours from my house, so my family and I decided to join the others at Debbie’s place for a reunion of sorts.  You see, this was the first time the three of us (Dad, Debbie and I) have been together since Jeff’s death.

I had visited dad a few times either in WV or Florida…and we’ve visited with Debbie as well.  But this was our first gathering of the three.  In my over-analyzing thoughts, I wasn’t sure how the weekend would go.  Our last such gathering…at Jeff’s funeral…was anything but enjoyable.  Certainly memorable, but not for any reasons we wanted to remember.  How would things be this time?

Gladly, it was spectacular.  We laughed, we ate (Debbie cooked…yum!), we laughed some more.  Debbie and I shared inside jokes that Jeff and I would have shared…Dad and I shared a few melancholy moments talking about my mom and brother…but none of the times spent together felt like any type of memorial.  It was simply family time.  It was great.  It was cleansing.

The trip offered a bit of unexpected closure.  Despite enjoyable visits with each since Jeff’s passing, there was always the pretense that Jeff was no longer around.  There was almost a “let’s don’t discuss it” feel in the air.  And as a result, there was always a presence of melanoma.  Somehow, the black cancer would invade our time together and remind us that it had taken our loved one away.

During this trip, we all talked and laughed about Jeff...about ourselves…about family.  There was no feeling of an uninvited guest.  There was no melanoma in our midst. 

Ironically, my dad had been diagnosed with melanoma in situ a couple months earlier and had it removed.  He showed off the scar (although very difficult to see) on his scalp where the cancer was removed.  Perhaps this is why melanoma wasn’t present at our gathering.  Yes, melanoma had invaded our family and taken one of us away.  The next time it came, it was detected early and pushed away.  While we respected it for the danger that it is, we were no longer afraid of it.  And thus, it was not with us.

I embraced that feeling after leaving and decided not to drag melanoma along.  I still followed and shared stories on Facebook and tried to keep up with the goings on of friends in the melanoma community, but otherwise, I remained silent and simply kept melanoma off my mind for awhile.

My work and the holidays will most likely keep me busy and possibly away from the keyboard for a few more weeks, but I’ve decided to renew my fight against melanoma.  There is so much to do.  Not just for the memory of Jeff, but to protect my children, who will become tenacious teenagers this coming year.  Tanning bed legislation…sun safety education…fundraising events…  Yes, so much to do.


And so much to be thankful for.

Note: The photo I share in this piece is actually a photo of a photo I spotted in Debbie's bedroom.  It was taken back in 2000 or possibly earlier.  That's me on the left, Jeff in the middle, and Dad on the right.  This was one of the last Thanksgivings that we all spent together as my mom passed away in 2005 after my kids were born in 2002.

Wednesday, October 29, 2014

The Wolf Reveals Itself

Back in May, I wrote a post about the proposed tanning ban bill in North Carolina and how the American Suntanning Association actually supported the bill.  (It has yet to pass).  I stated that I was suspicious of the ASA’s motives to back such legislation to ban minors from tanning salons.  I suspected that they wanted any discussion of the negative impact of tanning to be swept under the rug. 

“Having no opposition to this bill means there will be no heated debate.  There will be no online forums.  There will be minimal media coverage at best.”

I went on to predict that while people would celebrate the passage of such a bill, the tanning industry would be licking their chops toward an older population.  After all, according to the ASA, those under 18 years of age account for only about 2% of the indoor tanning clientele.

“I predict the ASA will refocus their monies from fighting legislation to pushing the tanning industry on the over 18 crowd.  College towns will have an increase in tanning salons.  Specials on lotions and tanning sessions will be promoted on campus.  University girls will be reminded that having no tan before Spring Break is a fashion faux pas.  The wolf will shed its sheep’s clothing and the tanning industry will evoke a full frontal assault on the 20-somethings.  Sadly, many will buy into it all.”

Today, I read where that sheep’s clothing has indeed been shed,  Here's one of many articles.

A study published in JAMA Dermatology (a journal of the American Medical Association) reports that 12% of the top 125 colleges across the US provide on-campus tanning facilities. Over 14% of colleges allow the use of campus cash cards to pay for tanning.   Also, more than 42% of the campuses have tanning facilities in off-campus housing that are pretty much part of the rent.  In other words, there is no limit on usage for the tenants!

The conclusion of the study: “Reducing the availability of indoor tanning on and around college campuses is an important public health target.”

What did the tanning industry have to say about this? Well, the Indoor Tanning Association stated “There is no consensus among researchers regarding the relationship between melanoma skin cancer and UV exposure either from the sun or a sunbed.”  No surprise there.  The wolf is back.

We need to take the study’s conclusion to heart…we need to make college-supported tanning a target for elimination.  We, as alumni, students and supporters need to contact our institutions of higher learning and demand that on-campus tanning be eliminated completely.  We need to demand that the schools not endorse off-campus housing that provides tanning beds as amenities.  We need to support and promote any campaigns that educate the student population on UV exposure and its true relationship to skin cancer and melanoma.  We need to contact our fraternity brothers and sorority sisters and encourage them to take positive action in this cause.  We need to make the university and college student population understand that the damage they do to their skin today will last a lifetime.


Please take action.  It’s the only way to defeat the wolf.  

Wednesday, October 15, 2014

The Staging Debate: An Analogy

Note: This post is not intended to reflect my views on gun control or gun owner rights…it is to merely serve as an analogy to make my point.

A gun was pointed right at you.  The eyes of the gunman were wild and stared into your soul.  You glanced at the gun and saw his trigger finger curl.  Then there was the deafening sound.  There was no way you could completely dodge the bullet. 

There are a few scenarios that could have played out from this scene.  Let’s count them down from worst to best.

4. The bullet inflicted a severe wound and you had an 85% chance of dying.  The internal damage was extensive and you likely suffered a painful death.

3. The bullet inflicted significant damage to a major organ and you were in intensive care and watched closely.  You still had a 60% chance of dying.  If you didn’t die, the recovery process was slow, painful and expensive. 

2. The bullet hit no vital organs but you were still hurt quite significantly.  You may have gone through rehabilitation and suffered permanent scarring.  Chances are that you lived, but you may have limitations later in life…not only physical, but mental and emotional.  The image of your experience will never go away.

1. The bullet hit your arm or leg, but didn’t cause major damage.  You required some minor surgery and ended up with scarring, but there was no danger at loss of life.  You will, however remain emotionally scarred.

0. The bullet barely grazed you.  You had no physical evidence of being hurt except for maybe a scratch, but you may wake up from your sleep with nightmares of your experience.

Of these five results, would you claim that any is not a victim of an armed assault?  My guess is no.  Whether you died or you were barely touched by the bullet, the morning headline would still most likely read, “One Person Shot.”  You would indeed be a victim.

So why is it that someone with Stage IV melanoma (who has only a 15% chance of surviving) is deemed as a melanoma warrior or survivor, but those diagnosed Stage 0 or Stage I are told they can’t be considered the same?

Sure, the higher stage diagnosis involves a LOT more heartache, pain, treatment and money spent.  No one would ever dispute that a Stage 4 warrior suffers far more than a Stage I patient.  But anyone…ANYONE…who is told “you have cancer” has seen that gun barrel pointed right at their chest.  They’ve seen the wild eyes of a killer face-to-face.  They’ve realized that they have a very real chance of something going very bad.  Perhaps hearing those words…”you have cancer”…is what defines a warrior.  It’s what defines a survivor.


There is one difference between the analogy comparing an armed assault victim to a melanoma patient.  The gun victim may never have to experience such an encounter again.  The melanoma warrior has a 1 in 3 chance of the melanoma coming back.  And in the case of my low-stage diagnosed brother, it came back to kill him 6 years later.

Wednesday, October 1, 2014

Pennies and a Tutu

Please accept my apologies for my absence from blogging.  Work is always a challenge, plus I went on a vacation, celebrated an anniversary, and enjoyed the height of softball season for my daughter (my first as a sport parent).  Oh, and there was this little thing called the 4th AnnualAmanda Wall – Corey Haddon Memorial Walk…also known as the Miles for Melanoma – Raleigh Walk.  (Whew…that’s a long name!)

This is the third year that I’ve been associated with this walk and it’s greatly rewarding every time.  Admittedly, those that founded this walk do a lot more than I, but I still try to pitch in when I can.  For me personally, this was the most successful walk yet!  Here’s why:

Over $22,000 raised!  This is lower than our goal, but considering that the committee cut back on some raffle items, we did pretty damn good!

One of our top fund-raising (nearly $3000) and entertaining teams...The Sun Block-ade 


Blue Lizard!  The awesome sunscreen company became a corporate partner with the walk this year and made their presence known with some samples at the walk.  It was nice to know that Blue Lizard is now available locally at Harris Teeter supermarkets (although…pssst…it’s cheaper to order online).

Blue Lizard...Corporate Sponsor!


Skin screening!  For the first time, we had a dermatologist (from Sanford Dermatology) performing free skin screenings.  The doc pointed out two spots that should be looked at more closely.  I have my annual appointment in about a month, so you can bet that my dermatologist will be made aware of these spots!




Family and friend support!  While I would promote the walk at my workplace in previous years, there seemed to be a greater interest this year.  This was partly due to the Amanda-Corey group’s presence at my company’s health fair in August.  Also, I decided to be a bit more aggressive in urging people to attend or donate.  And they did!  Plus, my family joined me at the walk for the first time.  There had always been some conflict in the past, but this year I got to have my wife and two kids walk along side…even though they seemed a little wary of my attire.

Co-workers Phung and Marcie, Marcie's kids Max and Connor, Me, my kids and my wife Kim  (missing from photo are co-worker spouse Jon Bailey and son Joshua)


Pennies!  I decided to start a campaign called #CARRYMYPENNY in which I would carry a penny for every dollar donated.  While my unofficial total was $860, I went ahead a carried an even 1,000 pennies just in case I missed a few.  That’s 6 ¼ pounds worth of pennies.  Admittedly, that’s not a lot, but I can tell you that it feels quite a bit heavier after 3 miles of walking.  Although as you can see in the next photo, I had a bit of help from one of my co-worker’s sons.

Connor toting my pennies!


Tutu!  I was very proud to wear the black tutu as the East Coast Division of Men in Black.  There was talk among the Amanda-Corey group that perhaps others would don the tutus next year for certain donation amounts.  I know this method works…I had a rush of donations once I announced I’d wear the tutu after I hit the $500 mark.  Perhaps next year I’ll offer other humiliating incentives for higher amounts.  I need to ponder that for a while.

Man in Black...East Coast Division


My friends at the Amanda-Corey Walk deserve a nice long rest and a celebration dinner.  I know they’ll start planning again in a couple months, and I have no doubt that next year’s event will be spectacular!

Monday, September 1, 2014

Labor Day...No Time to Put Away the Sunscreen!

It’s Labor Day.  Summer is unofficially over.  If you or your kids aren’t back in school already, they’ll more than likely start very soon.  It’s time to put away the beach towel, the boogie boards and the sunscreen, right?

Wrong!  Okay…the beach towel and boogie board can get stowed away, but that sunscreen needs to remain in your medicine cabinet or bathroom counter!  Even though the hot summer sun won’t be shining so high in the sky, it still emits those UV rays that damage your skin.

Many people associate heat with sun exposure.  If it’s not hot, the sun can’t be causing any harm…right?  The truth is sun exposure can be damaging even in the cold winter months.  While UVB rays, which cause burning, are weaker in the mornings and afternoons as well as the non-summer months, UVA rays are at their full intensity.  Yep…UVA rays are as strong in mid-winter as mid-summer, from sun-up to sun down.

UVA rays are more commonly associated with aging and wrinkling.  They also penetrate the skin more deeply than UVB rays (thus not associated with burning as much).  This deeper penetration causes significant and irreversible damage to your skin that may not be noticed for months or years down the road.  It’s important to protect yourself year round!

How?  Use sunscreen, but be well aware of what your sunscreen protects.  The SPF rating of a sunscreen indicates its ability to protect against UVB rays.  The SPF rating has no bearing on how well you’re protected against UVA rays!  It’s important to use a sunscreen that is “broad spectrum” or offers UVA/UVB protection.  Otherwise, you may not be protected from UVA rays at all!

Even if you have the right sunscreen, it doesn’t offer all the protection you need.  That low autumn or winter sun plays havoc on your eyes, especially when driving.  Most likely you’ll be wearing sunglasses, but again, it’s important to wear the right type.  Did you know that 70% of UVA rays penetrate glass?  Yes…even eye glasses and car window glass.  Don’t simply by glasses with a darker tint.  It’s important to select sunglasses rated with 100% UV protection…these will deflect the UVA rays as well as UVB rays.

As the air gets cooler, you’ll most like wear longer sleeves and slacks.  This should provide good sun protection, but don’t forget your exposed neck, face, ears and hands.  Apply sunscreen as mentioned before, but also wear a hat.  A wide-brimmed hat is preferred over a ball cap in order to protect your neck and ears.


I hope this past summer created great memories while you protected yourself against the sun.  But please don’t forget that sun protection is a year-round event.  Stay sun safe!

Saturday, August 9, 2014

Kings Island Kicks Cancer


When I was a kid growing up in St. Albans, West Virginia (near Charleston), one of the best day-cations we would take every year was a trip to King’s Island just north of Cincinnati, Ohio.  My parents would wake my brother and me up well before sunrise and we’d hop in the car for the 3 ½ to 4 hour drive to Mason, Ohio…usually stopping for breakfast at the original Bob Evans farm near Gallipolis, Ohio.  Spotting the 333 feet Eiffel Tower from Interstate 71 set our hearts racing and we knew we’d soon be stopping in the Penelope Pitstop section of the massive parking lot and riding the shuttle to the main gate.  Carousels, rides, shows…this place had it all.  As little kids, we’d hold our parents’ hands and drag them to each attraction.  As teenagers, we’d venture out on our own and seek every thrill ride, and perhaps a cute girl we’d never meet again.  But the highlight of the day back then was challenging the longest wooden roller coaster in the world…”The Beast!”  Whipping through the woods at 65 MPH caused us to scream in delight and terror all at once.  It was the best.

It’s been years…no, decades since I’ve been to Kings Island, but the memories I have are still some of the best ever.  So it was with great interest and pride that I saw where the amusement park had launched a program called “Kings Island Kicks Cancer.”  From July 25 through August 24, park guests can purchase a soccer ball for $5 to kick into the park’s massive fountain.  


Each ball is an entry to win a 201 Honda Fit, plus net proceeds benefit three cancer charities: TheDragonfly Foundation, Pink Ribbon Girls, and Melanoma Know More!

Today, August 9, 2014, Kings Island and Melanoma Know More teamed up to organize a world record-setting event.  2,148 people applied sunscreen at one place at the same time!  


This beat the previous world record of 1,822 set in May by Ann’s Hope Foundation, another great organization raising funds for melanoma research and education.

Ever since melanoma entered my life after my brother’s diagnosis and eventual death, I have heard melanoma referred to as “The Beast.”  Every time I’ve heard those words, I was reminded of the good times at Kings Island, tackling a different Beast.  Today, these two parts of my life merged in a beautiful way…one beast fighting another.


Events like this are a fun way to educate people about melanoma, to encourage sun safety, and to answer the Surgeon General’s Call to Action against skin cancer.  Thank you Kings Island…and thank you friends at Melanoma Know More.