Friday, December 30, 2011

Sound Advice

I read an article the other day citing a study from Nancy University in France stating that some multi-vitamin pills containing vitamin E, ascorbic acid, beta-carotene, selenium and zinc increase the risk of malignant melanoma.  Ironically, during a visit to my general practitioner last month, I asked about whether or not I took too many supplements and vitamins.   For the most part, he supported my intake with only minor warnings for overuse of a couple supplements.  Overall, he didn’t completely didn’t completely debunk this study, but he seemed to think that there were far more studies supporting the individual benefits.  
It has been stated that “data” can be manipulated to benefit any side of an argument.  I’ve also heard it be said that any point of any argument can find some quote or passage from the Bible to back it up.  I have to believe the same is true of all the studies published or discussed about almost any medical issue.  The study in France was not about melanoma, but of whether or not multi-vitamins served any benefit to people at all.  In short, the study stated that there was no benefit, and in fact there were some statistical relations with increased melanoma risk as I mentioned above.  I would guess that further medical studies should be performed to validate this finding as my doctor implied.
I also read a letter in the Calgary Herald from a gentleman citing research from the UK which found no evidence for sun bed use as a risk factor for melanoma and only a small non-significant increased risk for those under 25.  Of course, this counters many other studies I’ve read from many reputable sources that state that tanning beds can be a direct contributor to melanoma.
Several melanoma survivors and warriors have issued warnings to others to not do your own research on the medical specifics of melanoma.  I have to agree with that.  For one thing, the true experts…your doctors, dermatologists and oncologists and their staffs are the ones that deal with your situation every day.  They are human and may not be perfect, but they are far more focused and informed than a large majority of internet articles and bloggers…including yours truly.
What I’m trying to say is, you can find any study which supports exactly what you don’t want to read, and yet you can find the same to help give you confidence.  The important thing is to always, ALWAYS confide in your doctors.  Ask them the questions…ask them to validate or debunk the article you’ve read.  Listen to other warriors who have been there as they share their experiences, fears and struggles…but always seek the medical advice from the professionals.
And that’s my advice for the day.

Tuesday, December 27, 2011

Don't Be Missed

Another Christmas has passed without my brother, Jeff.  He is included in so many holiday memories…from the EARLY Christmas mornings where we’d sneak around checking out Santa’s gifts, to the infamous Christmas golf ball, to more standard memories.  This year, more than last, he was truly missed.
He passed away in November last year…about the same time we all start decorating our houses for Christmas.  The post-funeral mourning sort of meandered its way into the holiday season…so missing him last year was more like an extension of his initial passing.  But this year, Christmas showed up with no pre-Thanksgiving grieving, but with the normal fanfare and anticipation that only one’s children can amplify to the most enjoyable levels.  No, this year we’d have no grieving period.  But damn was he missed.
Don’t get me wrong…I had a fantastic Christmas with my immediate family.  Santa confirmed to my kids that they were indeed good this past year…to record spoiling (and bankruptcy) levels.  The food prepared was delicious and filling.  And the company of my wife’s family visiting for Christmas dinner was excellent as always.  We always keep it simple and have ham sandwiches (real ham…not Oscar Meyer deli meat), three bean salad, potato salad…almost as if it were a summer picnic.  After dinner we exchanged gifts.  We surprised my in-laws by having their old 8mm home movies converted to DVD.  This of course spawned all sorts of stories of Christmases and relationships of the past.  This was exactly like the type of conversation Jeff and I would have had.
I laughed at their stories and had genuine interest of the various uncles and their hijinks of yester-year.  But deep inside, I missed my brother.  I wasn’t grieving any more…I was just missing him.
I’ve been suffering from blogger’s block lately because, frankly, I’ve had nothing but family and “Jeff thoughts” of late.  My intent in this blog was never to be a Jeff Grieving site…but to be an outlet to create awareness for skin cancer.  So in that regard, let me add one melanoma-related thought.
Melanoma kills people.  It kills family.  It makes those family members be missed.  To keep your loved ones from grieving your illness or your death, do what you can to prevent this mostly- preventable form of cancer.
Don’t be missed.

Wednesday, December 14, 2011

Ignore the Boundaries

My Facebook page “Likes” have surpassed 800.  Thank you SO much…I never would have thought that a few months ago that I would even have 20 people following my page.  It means a lot.
One of my personal traits (quirks most likely) is that I tend to make lists.  I can make a great list of projects (and not complete one), Christmas gifts (but hate to shop) and just random stuff.  For my Facebook page, I started to keep a list of all the people that have “liked” it.  All 800 plus!
I recently modified the list a bit and included where folks live.  Many people keep such information private on their Facebook page (I don’t blame them), but I still have a pretty good idea how widespread the readership has reached.  By my count, I’ve been visited by at least 33 states and 10 countries! My Blogspot statistics show that I've had nearly 15,000 pageviews fomr even more countries.  Amazing!  Honestly, it’s not the location of “likers” that amazes me, but the diversity of the people.
I’ve been very pleased to see teenagers follow our words, and humbled by compliments from those who are more elderly and wiser than me.  There are people who have very strong Christian faith, those who follow other faiths as devoutly, and some that follow no set religion at all.  I’ve seen photos of heavily tattooed or pierced individuals, and images of pure untouched innocence.  And I’ve sensed great wealth from a few and financial hardship from others.  All these people from all walks of life are brought together by one thing.  Melanoma
That nasty sneaky brutal son of a gun…melanoma…has proven to be a force to bond across many boundaries.  While the Beast prefers lighter-toned skin and the practices of tanning addicts, it still touches all races.  It bows to no higher power as it invades people of any religion or belief.  It ignores any age difference.  It has no political preference as I’ve seen it affect conservative tea partiers and liberal occupiers.
Unlike forces of nature like earthquakes or tsunamis, melanoma feels far more personal to those who have been attacked.  A storm may affect hundreds in an isolated area, but the disease has a way of affecting thousands worldwide while still feeling like it’s picking on the one person.  The only way we can beat it is use its own power against it. 
Melanoma ignores boundaries and so should we.  We need to bond together as individuals spread around the world to raise awareness and fight this thing.  We must forget whether or not the person next to us worships in the same house, has a different sexual orientation, or is more or less well-off than yourself.  It’s time to clasp hands and join as one to fight melanoma.  It’s a lesson that the disease itself teaches us. 
Ignore the boundaries.

Mrs. BITNP

I don't like this one
I’ve not really introduced my family to the BITNP gang.  I suppose I tend to keep my personal life private…even though this is a forum where many folks share some pretty personal stuff.  Still, I try to keep this blog related to Melanoma and Skin Cancer Awareness with occasional personal stories of my brother Jeff who inspired this campaign.  But today, I’ll take a moment to talk about my wife Kim.
I won’t share much…she’s shy that way and would probably rather me just keep quiet.  But she’s allowing me to share a recent experience.  Like me, she’s blonde-haired, fair-skinned and rather “moley”…and she also used to lifeguard during the summers years ago.  I guess in this case, likes attract. 
I had encouraged her to see her dermatologist for quite some time.  She’s had acne and Rosacea issues in the past, but I was more concerned about a few spots on her back and arms.  (I wonder from where I got that paranoia?)  She finally went for an appointment about 2 weeks ago.
She told me in the evening that a “spot” had been cut out and that the doctors were taking a look at it.  Having read many of your accounts, I looked forward to receiving a simple voicemail or letter that said everything was fine.  What we got was a voicemail to call the office back.  Naturally, I got a little worried.
It turns out it was an atypical mole…a dysplastic nevi.  As many of you know, this is something “to keep an eye on”…and I know that many of you simply have the doctor cut it out.  We trust this dermatologist, so for now, we’ll keep a very close eye.  I took photos and measurements of several moles and she has a return visit scheduled in three months.  This seems aggressive behavior for “a mole”…but I’m glad it’s being taken.
Kim doesn’t share the same interest or fascination with Facebook and online networking as I…so she’ll probably rarely be online.  But I told her that this group of individuals…fellow Molemates and BITNP’ers …is one of the best groups of people from whom to gather info and support.  Still, I’ll most likely be her voice here and I hope that I won’t have much to say.  I hope it continues to be “just a mole.”  

Wednesday, November 30, 2011

Melanoma: Prevent It!

My name and “the Big C” was mentioned in the same breath about 6 years ago.  I was at the most fun part of my annual physical (smirk) when the physician’s assistant said she felt a large lump on my prostate.  After she let me pull my pants up and limp back to the exam table, she told me that I should see an urologist as soon as possible.  About two weeks later, I visited Mr. Long Fingers and he confirmed the same finding…a big ol’ lump.  He scheduled a biopsy within the next couple of weeks to see what could be found.  After fishing around (literally…it felt like fish hooks), he announced a few weeks later that the results were confusing at best.  He wanted to go fishing again with a bigger pole.  After I submitted double the samples and implanted my finger prints onto the metal exam table, we met again another few weeks later.  The results were negative…thank goodness.  Then he muttered…”but the previous confusing results suggest that you are very high risk for prostate cancer.  I wouldn’t be surprised if you had it when you turn 50.”
I’m 49 now.
When I first entered this phase of my life, I did a lot of online reading about prostate cancer.  I think we all do that when we receive some type of new information.  But after he cleared me and announced my potential for revisiting the fishing-hole exam room, I started to read up on prostate cancer prevention.  What I found was, except for a few supplements or vitamins, the best way to prevent prostate cancer was eat right and exercise more.
Okay…fine.
I can’t say I’ve followed the advice closely.  I’ve tried to eat better and tried to exercise more, but like most other people, I could do better.
But I digress.  My point is there really is no prevention for prostate cancer.  And as I have read a little about other cancers, including breast cancer, the same preventative measures are listed.  Eat right and exercise more.   Cancer in general is just a mystery.  That’s why millions a year are spent on research to find out what causes the disease.  This goes for all cancers…with the possible exception of one.
Melanoma.
There are a variety of possible causes for melanoma, but the one main undeniable cause is exposure to UV radiation.  This includes UV rays from the sun and those obtained in tanning beds/booths.  Does this mean that everyone that uses a tanning bed or sunbathes on the beach will get skin cancer?  No.  Did most people (greater than 3 out of 4) that was diagnosed with melanoma get it from exposure to UV rays?  Yes.  We’re talking 75% of the people that have melanoma today probably would not have it had that done one thing in the past.
Prevented it.
And not from simply eating right and exercising more.  They would have prevented it by avoiding the sun’s ray by wearing protective clothing or sunscreen and by staying the heck away from tanning beds.  Right now, we lose about one melanoma patient an hour…24 per day.  Had the 75% that had melanoma due to UV rays simply avoided it by protecting themselves, 18 people would not have died from the disease today.
There have been great strides in treating various cancers and we hope that one day, there is a cure for all.  But until that day, the best way to remain cancer –free is to not get it at all.  There’s no set rule for most cancer…but for melanoma and skin cancer, there is.  Do yourself a favor by wearing sunscreen and avoiding tanning beds.  You CAN prevent melanoma.

Tuesday, November 15, 2011

It's Been a Year...But I Know He's Watching

I have incredibly mixed emotions about today, November 15.  I’m greatly saddened that my only brother passed away from melanoma one year ago today.  And yet, in carrying on his campaign to raise melanoma and skin cancer awareness, I have “met” so many wonderful people and felt that I’ve contributed to the cause and grown as a person.  Don’t get me wrong…I would trade this great experience with BITNP in a heartbeat to have Jeff back.  But alas, that’s not to be.  So today, I choose not to commemorate his death, but honor the life he’s continued to instill in me.  I miss him…and think of him every day.  But I also know that he’s with me.  In fact, he told me so.
I used to keep another blog...one that shared random thoughts.  Some were funny…some were touching…many sucked.  But I enjoyed writing.  I never really knew what to write about...only that I enjoyed sharing my thoughts.  I had no real focus to my work, and I really only had one full time reader.  That was Jeff.  His passing is one reason I haven’t written in that blog for about a year.  My last posting was about…well, I’ll let you read it.  I’ll edit it a little, but the following is basically what I shared about a year ago:
If you’ve read some of my Facebook postings, you know that I engage in a hobby known as geocaching. Basically, geocaching is a global scavenger hunt. The location of hidden objects can be found on the website, Geocaching.com. If you type in an address and find the link to a map, you’ll see that there’s most likely a hidden object nearby. There are about 5,000 “treasures” hidden within a 10-mile radius of my house. In fact, there are well over a million such treasures, or caches, hidden world-wide from county parks or city blocks and even the International Space Station. I bet there’s one near you!

Caches are rated 1 to 5 for both difficulty and terrain with 1 being the easiest. Seeing as I’m not a rock climber or scuba diver, I tend to look for ones rated 1.5 or easier. Whenever I travel out of town, I can load the latest cache locations into my GPS along with previous logs from other geocachers and a description of what I’m looking for. Caches can range in size from smaller than a thimble to a rather large water-proof box. I’ve found all sorts, although there are some types that are more common than others.

A 35mm film canister makes a perfect geocache container. Other geocachers hide the caches for others to find. One simply places a log inside for geocachers to record their find and perhaps adds a coin or little trinket as a reward. All caches contain a log on which the finder will sign his or her geocaching name (mine is MountieAl). Most small caches contain only a log. The “treasure” is in the hunt itself, not the end prize. Anyhow, one takes this small container and hides it in a tree stump or other such place. One very common hiding location is within a light pole in a parking lot. Most poles have a metal or plastic skirt at the base of the pole which can easily slide up, thus making a perfect hiding place for smaller caches underneath. And yes, most cachers will giggle when announcing they’ve found a cache “under a skirt.”

Jeff read a few Facebook postings of my initial geocaching finds and asked me about the hobby. After I described it, he started looking for some in Ohio, especially while walking his dog. I remember the first day he found one…he called me on his cell phone asking questions and giving me updates. He was so thrilled at the first find, and I could tell he was hooked. “Jadestep” was introduced to the geocaching world. As he always did with things that interested him, he quickly became very involved in the hobby and even helped organize a few Geocaching gatherings. He started to become one of the more involved geocachers in the Akron area.

When Jeff and I attended my step-mother’s family reunion in June, we made sure to go on a Hurricane, WV area “cache run” together. We found about eight caches that day…a record for me at the time. When we finished, my dad commented that geocaching was the first thing Jeff and I had done “together” in a long, long time. And it was true…somehow this silly little hobby bonded us closer than we’d been in years.

During that trip, Jeff commented that he had wanted to hide his own on a guardrail near the Walgreen’s in Hurricane. He always liked puns and many geocaches were given such titles which would also offer up a clue to the hide. His idea for this cache was “Guarding the Wal.” Jeff was always quite clever. Sadly, he never got to hide that cache.

Before I traveled to WV for Jeff’s funeral, I loaded the caches along my travel route into my GPS as I usually do. Granted, I had no intention of making this a caching trip, but seeing as how he loved to geocache, I thought it appropriate to be able to find one or two during the trip...perhaps at a rest area along the highway or near a restaurant during a lunch or dinner break. But honestly, my mind was far from caches as I drove up the day before his funeral.

On the morning of the funeral, I decided to take the car out to fill up with gas while the rest of my family prepared for the somber day. As I drove past that Walgreen’s in Hurricane, I noticed an icon on my GPS indicating a newer cache had been hidden near the drug store only a couple weeks prior. Again, I hadn’t planned on seeking any caches, particularly on the day of Jeff’s funeral, but curiosity got the better of me. I drove past the guardrails and into the parking lot. The GPS directed me to a light post on the parking lot edge, with a sign attached stating “Area Under Video Surveillance.”

I pushed a few buttons on my GPS to read about the cache and look for any clues. What I read gave me chills. I jumped out of the car, lifted the skirt (giggle) and grabbed the 35 mm film canister. There was only a log inside, as suspected, and I signed it “MountieAl for Jadestep.” I returned the cache to its hiding place for others to find and then sat back in the car with my heart racing. Tears started to well up as I drove off.

It wasn’t the content of the cache, nor even the coincidental location of this geocaches that had me rattled.  It was the title of this geocaches that had me shaken…and yet smiling.  The name?

 “Big Brother Is Watching.”

(true story…100%)

So you see, my brother DID tell me that he’d be with me.  He’s watching my life’s path and guiding me.  And that’s why on this day…a day that marks a year since feeling great sadness, I feel great joy and confidence.

I miss you big brother…now let’s go find another cache.

Thursday, November 10, 2011

A History Lesson

“You’ve come a long way baby!”  Remember that slogan?  It was for Virginia Slims cigarettes…a tobacco product marketed for women.  The concept was that smoking was traditionally a man’s privilege, but not a woman’s.   However with Virginia Slims, smoking was not only acceptable, but fashionable and chic.  “You’ve come a long way baby!”  (Check out the old TV ad)  It was a successful marketing campaign that echoed the Women’s Rights movement of the 60’s and 70’s and probably created many fashionably sick women.
But women weren’t the only demographic targeted for smoking needs.  Remember the Marlboro Man?  What better icon of masculinity…complete with cigarette in his mouth.
As we look back now, I think most of society realizes the fallacy of such claims.  Smoking leads to lung cancer or other devastating health conditions…it was a bad thing and still is.  Of the friends I have that smoke, every one of them has muttered “I need to quit someday” as they light one up.  It’s a bad habit…it’s a proven medical killer…and even the smokers know it’s a bad thing.  My mom smoked practically all her life.  Bel-Air was her brand.  She died in 2005 of lung cancer.
I know this is a skin cancer and melanoma blog site, but it’s also Lung Cancer Awareness Month.  This cancer is the biggest cancer killer.  And it’s possibly the nastiest of all.  Please keep those we’ve lost or those struggling with the disease in your thoughts and offer support of some sort.  And don’t blame them for smoking…it used to be the fashionable thing to do.
I’d usually stop my thoughts here, but I’d like for you to think about lung cancer a little longer…and the parallels to melanoma.  Smoking was fashionable.  Tanning IS fashionable.  The tobacco industry was quick to point out the “cool” aspects of smoking.  The tanning industry currently touts the cosmetic benefits of a glowing tan.  Years of awareness campaigning and class action lawsuits made all of society realize the truth about smoking…even the current smokers realize it’s a bad habit.  What about tanning and its relationship to melanoma?  Is it time to repeat history?

Occupy Tanning, Inc.

I’m not an economist…if I were I’d probably not be living paycheck to paycheck.  But I suppose the whole thing with “Occupy Wall Street” is that the increasing gap between the haves and have-nots…the 99% versus the 1%...is what’s under scrutiny.  I guess they’re protesting to create change and a wealthier society.  I’m sure it’s far more complicated than that, but that’s my general take.  But as interesting as some of these protests are, I witnessed and took part in another impromptu “Occupy” campaign.
A few days ago, someone posted parts of a Q&A page from a tanning company’s website.  Tropi Tan shares a lot of “information” about the tanning process.  Here’s what they say about “why do we always hear that tanning is bad?”
Tanning is an important issue to the dermatology industry because skin cancer represents the only subject that its lobbyists can promote as critical or life threatening. Unfortunately, in their zeal to scare consumers into their offices, lobbyists for the dermatology industry have twisted the facts and exaggerated many research findings. They continue to mislead the public about the dangers of tanning, whether indoors or outdoors.

There is also the issue of the “Almighty Dollar.” The fear of the sun generated by dermatologists feeds a multi-billion dollar industry lead by huge special interest groups who conduct and promote most of the research on skin cancer. Lobbyists for pharmaceutical firms that sell billions of dollars worth of sunscreens and SPF cosmetics have teamed with the dermatology industry to promote a misinformed campaign of sun abstinence.

Conversely, there is no major industry except the indoor tanning industry that makes money by promoting the positive effects of sunshine. The indoor tanning industry consists of small companies that can’t match the marketing power of the multi-billion dollar "sunscare coalition."

Over the last few years, thousands of indoor tanning professionals have supported an organization – the Indoor Tanning Association – which was founded “to protect the freedom of individuals to achieve a suntan, via natural or artificial light.” This organization is currently working to develop a national advertising campaign that will increase public awareness of “smart” tanning, the importance of avoiding sunburn, and the many positive effects of regular, controlled UV exposure.

Nowhere on this “information” page do they mention that…um…well…tanning is bad because it significantly increases the risk of skin cancer.
So, where does the “Occupy” part come in?  Once this was posted on Facebook within the linked group of melanoma warriors and “mole mates,” it spread fast like…well…you know.  One person suggested visiting the company’s Facebook page and giving them a piece of our collective mind.  And boy did we ever!  Within minutes, their page was visited by many folks with some sort of relationship with melanoma.  Facts were posted.  Opinions were shared.  And the company’s “Get an hour’s tan for only $1.05” really came under fire.  For a little while there, we all Occupied Tanning, Inc.  Not surprising at all, our comments were all deleted by the next morning.  But I’d like to think that someone read one or two comments and thought twice about tanning.
Personally, I wasn't trying to put anyone out of business...but merely offering the other side of the tanning story to anyone that might be considering a $1.05 tanning session.  The tanning industry has a legal right to stay in business, but the consumers have the right to all the facts as well.
Many people will see the Occupy Wall Street protests on TV and switch the channel…others will observe more casually like I have.  But one or two key folks might hear their message and take action to make change.  The protestors won’t be the one’s making the change…but they are the people attempting to inspire change.  And that’s where change starts…from ideas and inspiration.  Perhaps our little “Occupy Tanning, Inc.” inspired one person that could lead to a healthier society.
Keep sharing the message!

Tuesday, November 8, 2011

Someone Will Hear You

There are days when I have to wonder if anyone is listening to my rants and thoughts regarding Melanoma Awareness, and there are days when I know that steps are being made in the right direction.  This week had both.
A few days ago, a lady made a comment on one of my Facebook photos.  The picture showed my first BITNP prototype t-shirt, and hers was one of many varying comments.  This comment stood out in that she mentioned that she had a t-shirt graphics business and invited me to check out her website.  Having long neglected my t-shirt requests, I immediately visited the site.
I won’t mention the name of the business…if you really want to look it up, go dig in my Facebook page.  But the gist of the business’ name was “Acme Printing and Tanning.”  Yes…you read the second part correctly.  She not only was in the business of printing t-shirts, she also owns two tanning beds!  To her credit, she stated that they run the tanning salon with strict rules and allow no one under 18 to use the equipment.  I told her that while I support the right for adults to visit a tanning bed, I couldn’t condone the act, thus cited a conflict of interest for doing business with her.  And while our “business” correspondence was cordial, I couldn’t help but wonder if she even read the content of my FB page.  And if she did, does that mean my message isn’t getting through?
Today, I attended a local annual tradeshow at which my company and I participate.  It’s more of a chance to network with colleagues around the area, compare notes and just experience some decent professional fellowship.  Of course, I had met with many of the sales guys in attendance over the years, and many knew of my brother’s passing last year.  Most of the condolences had long past (which I was glad about) and it’s been business as usual for the last few months.  For those with whom I’d had lunch in the past and shared casual conversation, I most likely mentioned this BITNP blogsite and my FB page.  I never really thought much about it…it was simply small-talk between business discussions and a little chance to get the word out.
Back to today’s tradeshow, I made my rounds before the show actually started to visit with a few of my closer colleagues.  Most exhibits had bowls full of candy, a stack of brochures, and some trinket like a pen or mouse pad with their company logo.  When I approached one colleague, he and his associate were placing little bottles of lotion and hand sanitizer on the table.  After the handshake, he smiled broadly and said, “Well, what do you think?”  I joked that he should stick with selling printed circuit boards rather than get into the lotion business  when he told me to take a closer look.  It was hand lotion…and as I read the label, he said, “I thought of you as we picked this out…it’s SPF 30.”  He went on to describe to his associate that my past conversations inspired him to get checked recently (he had “a spot” removed…nothing serious he said) and mentioned this blog.  I couldn’t help but smile the rest of the tradeshow.
Later in the day, one of my close colleagues and friends back at my workplace called me.  She just left the dermatologist and gave me a report.  She has very light-toned skin and freckles, so she was a little worried.  She’s probably one of my biggest offline supporters (and a regular reader of this blog), so I was relieved that she had a clear check…and happy that she visited my same dermatologist.  (How she was able to get an appointment within a week is beyond my comprehension).  She thanked me for inspiring her to visit the dermatologist… and I thanked her for getting checked.
I’m not posting these stories to toot my own horn…but to inspire you to do the same.  You might encounter a few (or many) people that just don’t seem to get it.  But before you realize it, people DO get it.  People may not always seem to listen…but they hear.  And hearing the message requires that someone deliver the message.  So please…wear your sunscreen, get yourself checked if you haven’t and deliver the message!  Someone will hear you.

Wednesday, November 2, 2011

MelaFind

A new device called MelaFind was approved by the FDA this week.  This device includes a scanner and a computer program that analyzes images of skin lesions.  Apparently, MelaFind missed only about 2% of those spots that were later biopsy-proven to be melanoma...an amazing success rate!
According to one article, one drawback is that the device has a high rate of false positives.  About 90% of the time, spots that MelaFind identified as suspicious turned out to be benign.  This seems alarmingly high and would cause undue stress on the patient, but apparently a panel of dermatologists had an even higher rate of false positives.
The FDA passed MelaFind by a slim 8 to 7 margin with the primary resistance being the high false calls.  Ironically, I mentioned photo-mapping of moles to my dermatologist yesterday and he digressed into a few comments about the non-reliability of digital imagining techniques.  It seemed that his opinion was that technology had not yet caught up to the trained eye.  What this told me is that, despite this device being available for use, my dermatologist would most likely not use it. I would imagine other dermatologists would be hesitant as well.
So I suppose this is a good news bad news scenario.  The good news is, doctors have another tool to assist in the fight and diagnosis of melanoma. The bad news is that it may lay dormant and rarely be used.  Let’s hope whatever decision your doctor makes is the best decision for YOU.
Finally, the best news out of this…melanoma is once again a headliner in the medical news.  This has been a banner year for development in the fight against melanoma, and any mention on the news helps raise awareness.  Remember, the best weapons against this disease is awareness and prevention.

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.

Friday, October 28, 2011

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.

Wednesday, October 26, 2011

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.

Saturday, October 22, 2011

We'll Support Your Pink, But Let Us Keep Our Black!

I visited the Pink Palace today…otherwise known as the neighborhood mall.  My kids commented on how much pink there was and asked where the pumpkins and ghosts were since it's October.  I explained that it’s Breast Cancer Awareness Month and that many stores have special deals in which proceeds from sales go to breast cancer research and awareness.  I explained to them that it’s a good thing and that’s why so many people and stores participate.  And it is.
Then my daughter said, “Look daddy!  It’s YOUR ribbon!”  Sure enough, I looked at the Lady Footlocker display and saw this:

Well, obviously, it’s not “my” ribbon…it was part of a display for "Making Strides Against Breast Cancer."  Still, I was a little taken back in that breast cancer awareness is a pink RIBBON campaign…but here before me was a black ribbon associated with breast cancer awareness.
Melanoma awareness isn’t as established, and there’s a mixed of orange and black awareness colors, but the primary associated color is black.  Black ribbons represent many other things (mourning, remembrance, and gang prevention among others)…but when it comes to cancer, it belongs to melanoma awareness.
I understand the main color of the display was pink, with black lettering.  But when it comes to the actual ribbon…breast cancer awareness folks, PLEASE stick with pink.  We melanoma folks are having a tough enough time establishing our own presence without having our ribbon color be used by others.
(And for those that might call me hypocritical since I use the word “pink” in my own campaign, you may have a point.  But I've only used a black ribbon, with the exception of the black AND pink ribbon when discussing the genetic link between the two cancers.)

Monday, October 17, 2011

"...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!

Monday, October 10, 2011

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.  

Saturday, October 1, 2011

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!

video

Monday, September 26, 2011

"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 300th 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 300th.  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.