Does Melanoma Hurt?

One neat thing about Blogspot is the ability to track how my readers found their way to my blog.  I’m sure other blogging platforms have the same capability.  I can see from which sites people clicked a link to BITNP.  Most links come from Facebook or other blog sites such as Welcome to the Hotel Melanoma, Attitude of Gratitude,Adventures With My Enemy…Melanoma, or Strong-Enough.  However, sometimes the sites seem a little odd (such as “catch-a-cheater.com”…if you’re having an affair, be advised that your spouse might be tracing your links!).  Additionally, I can determine which search words in Google led readers to my site.  In most cases, the search words include “black,” “pink,” or “melanoma.”  Again, once in a while I have an odd series of words or a phrase pop up.  And then sometimes, it catches my eye for another reason.  The other day, the following phrase appeared:

Does Melanoma Hurt?

I have to wonder why someone typed those words.  Could it be that they have a friend, family or loved one that has melanoma and this person is just too scared to ask such questions?  Or perhaps this person was recently diagnosed with melanoma and trying to see what he/she can expect.  It seems like a naïve question, but I imagine there’s a deeper reason for the search.

As for the answer…well, as I’ve stated before, I don’t have melanoma, so I’m not really qualified to answer.  But it made me think of my brother Jeff and the few times he discussed his condition.

When he was first diagnosed in 2004, he didn’t raise any real alarms.  I would assume it was caught early as he never conveyed to what stage the cancer had progressed.  He…well…merely “had it cut out” and never spoke much more about it again.  All I do remember is that he mentioned the golf-ball sized crater in his back, but no pain associated with cutting it out.

When the beast returned in 2010, Jeff didn’t complain to me much about the pain.  But there was plenty of suffering.  When I visited him three months before he died (only a couple of weeks after his diagnosis), he was bloated from the steroids, bald, required a cane to walk, rapidly losing his eyesight, and having great difficulty with short-term memory (often pausing to recognize me in the middle of a conversation).  He never mentioned the physical pain…but he suffered.  He also had Type II diabetes and he had many complications with his sugar levels.  When he flew to MD Anderson, they had to spend the first 3 or 4 days keeping him from a diabetic coma…the meds had him way out of whack.  He definitely suffered…but I’m not sure about whether or not it hurt.

As for me…I felt great emotional pain during his ordeal.  His widowed wife continues to feel an incredible loss…calling me in tears in the middle of the night even 16 months after his passing and asking me “why?”  My father lost his first born son and while he continues to show me great love, I can see the toll my brother’s death has taken.  For all of us, it has hurt…and continues to hurt.

But again, I can’t answer directly…so I posed the question on Facebook.  And many people responded as such:

“Actually it didn't hurt until the doctor picked up the knife to cut it out...That was last August and when I scratch my back where the scar is it still hurts occasionally.” – Jill

“Yes it hurts! My twin sister has it and it went terminal and surgery is not an option so every day I see her in pain.  She recently lost all her hair and it breaks my heart because there is nothing I can do about it! She has been thru so much just within the last year.   This has spread so quickly and now is on her brain.  But we will keep on fighting this!!!” – Julie

“It hurts every day when I remember my mom, who had melanoma return after being disease free for 13 yrs. first in her foot in 1997, then in her thigh and colon in Dec 2010, then in her brain in May in 2011, passed in Dec 2011...the nastiest cancer there is.....” - Laurie

“I'd take the physical pain over the emotional pain any day.” – Chelsea

So mystery Google reader…if your search for “Does Melanoma Hurt?” continues, I hope it leads you back here to read these comments.  If you or a loved one suffers from this horrible cancer, my thoughts and prayers are with you.

And to answer your question… based on the comments shared…yes, melanoma hurts.

"But at least I know the risk I am taking"

One tends to get snippy when a privilege is taken away.  I recall back when I was a sophomore in college and West Virginia changed their legal drinking age from 18 to 21.  I was 19 at the time and was fortunate enough to ride a grandfather clause that allowed me to continue drinking (never heavily mind you, but socially).  Still, the freshmen behind me were banned.  Well, at least at public bars…not so much at private parties.  But I digress.  The point is, those younger than me were really peeved that they had to sneak around to drink.

There’s a lot of snippiness going around at high schools and colleges lately due to increased pressure to stop tanning.  For many kids, tanning for prom, spring break or a summer “base tan” is a rite of passage.  The thought that government might take away their “right” to tan is upsetting and downright socialist!  At least that’s what they think.

A recent blog commented that the male brain doesn’t reach maturity until the mid-twenties.  Anotherblog cited a book that mentions that the brain may not finish growing until after the teenage years.  What this means is that no matter the information piled upon teens, they just won’t comprehend the data unless they want to.  They will merely get snippy at being denied the “right” to tan and not understand the underlying reason for the ban.

Today I ran across an editorial…from an editor of a high school newspaper called the “The Sailor’s Log.”  The editorial piece was called, “To Tan Or Not To Tan: Editor ConsidersPre-Spring Break Options.”  Erinn Taylor openly admits that two weeks prior to her annual spring vacation to Florida, she visits a tanning booth three or four times per week.  She admits that this is probably not the smartest practice and goes on to quote various skin cancer facts:

“According to mayoclinic.com, being exposed to ultraviolet (UV) radiation (the type of light used in a tanning bed) is dangerous. It does not matter whether the rays come from a tanning bed or the natural sunlight.”

“According to health.harvard.edu, exposure to UV radiation is linked to skin cancer and premature aging.”

“According to livestrong.org, people who have used tanning beds before the age of 30 have increased their risk of melanoma by 75 percent.”

Erinn goes on to state that her mother had a basal cell carcinoma removed this past summer. 

“It looked like a scab, and the dermatologist cut it off, not a problem.”

Unfortunately her mother’s simple procedure to remove the BCC probably reinforced the classic “just cut it out” opinion that so many people have regarding skin cancer.  Still, her mother has now turned against tanning beds and is quite skeptical of Erinn’s use of indoor tanning.

The editorial goes on to state, “Simply looking at the facts, the decision seems obvious, but I have to look at my individual situation as well.”

Erinn decided to get her tan again before her Florida trip.  Her final comment?  “But at least I know the risk I am taking.”

No she doesn’t.  She THINKS she does…but she does not.  Despite the research she’s done and despite her mom’s insistence that she not tan, she’s going to go ahead and do it.    

This goes to support that there MUST be a ban enacted for those under 18.  Teens cannot comprehend the risk they’re truly taking.  Their parents are unable to stop them.  And like the freshmen back in my college days who found a way to get the beer they wanted, today’s teens will find a way past “parental consent” laws for tanning.

As stated by another, the only real way to stop people from tanning on a volunteer basis is to change the general public’s perception of what’s attractive.  This would not be an easy task.  Until then, ban the tanning beds.  Period.

On The Road Again!

Chrissy and Chris

Last year, the Skin Cancer Foundation’s Road to Healthy Skin Tour made 80 stops in 24 states.  They traveled through some pretty nasty weather conditions, including a massive tornado outbreak last year in Raleigh, NC as they headed out of town.  But despite the obstacles, Chris and Chrissy, the RV’s pilots and mobile clinic’s hosts, are back for another tour.  This year they plan to stop 85 times and visit three additional states.

The stormy theme to the tour seemed to return as another strong shower hit on the day they kicked off this year’s tour in Raleigh.  As I walked up to the large 38-foot yellow and blue RV, Chris was wiping off chairs and checking the many pamphlets and magazines to see if any got wet in the lunch-time downpour.  Kim Parker of the American Institute of Healthcare and Fitness, which hosted this first stop, was the first to welcome me.  Despite the rain, it looked as if a few others were visiting the clinic as well.

“We’ve had a fairly good turn-out despite the weather,” said Kim.  “We hope others show up during lunch and that one of the local news crews will stop by to do a story.”  When I identified myself, she handed me a media guide with all the statistics of this year’s tour.

Over the last four years, the Tour has screened over 13,000 people through the efforts of the volunteer dermatologists along the way.  More than 5,200 suspected pre-cancers and cancers have been detected including 239 suspected melanomas.  I find this ratio interesting in that it closely matches what I’ve read in various studies.  The chance of being diagnosed with melanoma is reported to be about 1 in 50…and the chances increase when being over exposed to UV rays through indoor and outdoor tanning.

Two dermatologists were volunteering during this time.  The first I talked with was Dr. Rebekah Oyler from Andrus and Associates Dermatology.  She was just finishing up her volunteer shift, but seemed quite personable and was very impressed by the service the Tour was offering.  In fact, as we chatted, three new interested people came for a screening.

Chrissy (who remembered me as “that blogging guy from last year”) asked if I was interested in another screening this year.  Of course!  As I filled out the paper work, I asked her a little more about their experiences on the road.  For the most part, she stayed very neutral in picking a favorite stop or more memorable moments.  But as Chris entered the RV, both commented how it’s not them but the brightly colored RV that gets all the attention.  “We drive the RV from place to place and Chrissy handles most of the scheduling, “chimed in Chris, “…but we’re not dermatologists.”

Chrissy laughed and recalled one time when a gentleman knocked on their door after they made a grocery stop to stock up for the road.  When they opened the door, he dropped his pants and asked them to take a look at a suspicious mole.  “I just told him that he needed to see a dermatologist to get that looked at!”

When it was my turn, Dr. Carol Trakimas from the Dermatology Center of Raleigh performed the exam.  “Dr. T” as she referred to herself has been involved with the Tour since the beginning.  In fact, she stated that she was integral in recruiting the other local volunteer dermatologists for this event.  “I feel this is a very important service to the community and have been in constant contact with the Skin Cancer Foundation to make sure I’d continue to be involved.”

As an organizer, the Raleigh area should be grateful for her assistance.  As a dermatologist, I have to admit that she and her medical assistant did a very thorough job.  In fact, my exam the previous year was very brief and basic, but Dr. T performed an exam in the mobile exam room that rivaled that of my normal in-office dermatology appointment.  In fact, she was so thorough that she found a suspicious spot on the back of my right leg.  It was a spot I’d never seen before as it was impossible to see directly and involved more flexibility than I usually attempt to see even with a mirror.  To me, it looked like nothing.  To Dr. T, it is worth taking a biopsy.

The RV is not equipped for such procedures, but is merely intended for screenings and suggestions for further treatment.  I took her suggestion to heart and contacted her office.  I have an appointment for that biopsy this coming Wednesday.  Of course, I’ll keep you posted.

As I left the exam room, Chris and Chrissy were discussing any last minute items they needed to pack.  Their seven-month trek was about to begin again.  I wished them well and told them I hoped to see them again next year.  I took a parting photo, said my thanks to those I’d met, and then headed to my car.  The sun has begun to shine brightly…surely a sign for a successful tour ahead!

The Ribbon Cutting

Like others who blog, I like to see what key words are used to find my blog.  Having “black” in my blog title leads to some fairly macabre searches.  Luckily these are few and far between.  However, one of the most common searches is the phrase “black is the new pink t-shirt.”  Such a search has been futile for months.  Until now.

After a nearly year long wait, I have finally opened up an online t-shirt store within zazzle.com.  Right now I only offer a few shirt designs and a coffee mug, but as time and inspiration permit, I hope to add more designs and products.  While I activated the store a couple weeks ago, I wanted to make sure I bought one shirt myself and checked the quality before I cut the online ribbon.  I’m happy to report that I’m pleased.  Here’s the first shirt “sold” to me:

I ordered a large, and I’m not a large guy.  I probably should have ordered an XL as I’m sure this 100% cotton shirt will shrink in the wash.  Still, I’m quite pleased.

Thus far, my only efforts to spread awareness have been through this blog and my Facebook page.  I made a few homemade BITNP t-shirts and wore them around…but otherwise my campaign has been strictly online.  I’m excited that I’ve started this new venture in spreading the word!

Let me be upfront about one thing.  “Black is the New Pink” is not a registered non-profit organization.  And Zazzle.com gets most of the money from the purchases due to them manufacturing and shipping the product.  (This would be true of every awareness campaign product that they sell…same with similar sites such as VistaPrint and CafePress.)  But BITNP will get a commission from each purchase. 

Again, I’m not a registered non-profit, but I plan to donate a sizable portion of my “cut” to various skin cancer and melanoma foundations.  Right now, my list would include AIM against Melanoma, the Melanoma Research Foundation, and the Skin Cancer Foundation.  There are many other worthy recipients that I’ll consider down the road.

The rest of my cut I plan to keep in a separate account and use it to further the BITNP efforts.  Such efforts might include paying for a URL and having a web designer help me set up a real website.  I may also use the money to file for a non-profit status (which will most likely include lawyer fees).  And I might use it to help attend skin cancer events that might be a bit farther away.  Rest assured I intend to use any of the money towards BITNP efforts and not to buy me a new HDTV.  You have my word on that!

So welcome to the new “Black is the New Pink” store.  Please go to www.zazzle.com/blackisthenewpink and browse around.  Tell others about it.  If you purchase something…thank you.  If you have suggestions…let me hear them!  Remember, you can send me email directly at fightmelanoma@live.com.

“SNIP”   The ribbon is cut.  Welcome to our store.

Every Blurb Counts!

I really enjoy sharing links, thoughts and information that I find regarding melanoma awareness and sun safety.  I also really enjoy reading what others share online.  But what I really enjoy the most is when someone shares information with me in person…someone who generally isn’t active on the Facebook discussions but aware of our mission.  That happened to me at work this week.
It’s been a really difficult few weeks at work as we’ve gone through an ownership transition.  It seems that the workload tripled in the same timeframe, so I’ve been spending far too many hours away from family and BITNP.  On Wednesday morning, I had a short day ahead due to an afternoon dental appointment, so I knew that everyone would try to pack in their day’s requests into that shortened time.  I expected a hellish day.  But my first call from a co-worker was not a work demand, but to inform me that she had found a couple of really good bits of information about melanoma in her Women’s Health magazine.  She wanted to share it with me so that I might share it with others.

Wow, talk about a real pick-me-up!  While the shortened day turned out to be as hectic as anticipated, the morning’s notice of sharing made it anything but hellish.  Thank you Susan for helping me refocus my priorities!  Now on to the information…

The March edition of Women’s Health had an article about four health concerns for women that could be passed along to the next generation.   They were heart disease, depression, breast cancer, and melanoma.  It was cited that the average woman has a 2% risk of being diagnosed with melanoma (that’s 1 in 50).  However, if a woman’s parent had melanoma, she had a 4% risk (1 in 25).  These seem like low percentages, but they point out that any unprotected sun exposure increases your odds exponentially.  This also echoes the genetic relationship I discussed recently in UncontrollableRisk Factors.

This same blurb goes on to describe three ways to reduce your risk.  First, eat up to two ounces of dark chocolate a day.  (I love women’s magazines and their relationship with chocolate).  Apparently digesting the treat “can shield your skin from oxidative damage caused by UV rays, slimming your risk for skin cancer.” 

Secondly, they remind you to read the fine print on sunscreen products.  Look for the words “Broad Spectrum” to get a balance of protection against BOTH UVA and UVB rays.

Lastly, they remind you that car windows do not block UVA rays, so make sure to apply sunscreen on your face, hands and arms when you plan on driving.  A 2010 study notes that there have been more skin cancer occurrences on the left side as a result of unprotected drivers.

The April edition had an article about how certain health concerns can be detected just but examining the eyes.  Within the article was a little blurb which stated that a mole on the eye’s inner layer could be a sign of melanoma.  “Sunlight can wreck havoc on more than your skin – it may increase the risk of developing cancer inside the eyeball.”  My friend was very surprised at this fact!  I hope that many other readers of the magazine got the message.

Kudos to Women’s Health for spreading the word about sun safety. 

As I said, I take great joy in sharing news and information in the interest of sun safety.  But boy is it great to know that word is getting out and coming full circle.  Keep up the mission folks…every little blurb counts!

Shading Your Wallet

While we all know that one should wear sunscreen year round, most folks won’t start applying it until the warm weather returns.  I’ll admit that I’m guilty of that myself at times, but then again, I’m donned in long sleeves and a hat pretty much every day anyhow.  My biggest flaw is not applying it to my exposed face and hands…I’ll try to get better at that.  But besides the act of laziness, there’s another obstacle that blocks (no pun intended) the use of sunscreen.

Cost.

At the recent MRF symposium at UNC, Dr. Antony Young gave a presentation on the use of sunscreen and whether or not it prevents the occurrence of melanoma.  The jury is still out on that, but he still encouraged its use.  In fact, he recommends using about 3.5 ounces of sunscreen lotion per day!  That’s a lot.  In fact, that’s about half of a normal bottle of sunscreen each day!  Dr. Young acknowledged that this is an expensive endeavor.  He cited one report that a family of four taking a week-long vacation to France (note that he lives in England) might actually spend more on sunscreen than the vacation itself!

Yikes!

I fought off the expense last year in a couple of ways.  First, I checked Consumer Reports and discovered that the cheaper Target brand of sunscreen was rated as effective as the more expensive brands.  Granted, each bottle was still about $8 a piece, but it was a definite savings from the $11 bottles of brand name sunscreens.

Secondly, I sought out coupons!  I’m nowhere near an “extreme couponer,” but I probably find at least a couple hundred dollars a year in savings from overall coupon use.  During this morning’s Sunday coupon clipping frenzy, I was happy to find two for sunscreen products, Hawaiian Tropic and Banana Boat.  I’m sure soon that Target will be posting coupons for their brand of sunscreen as well.

I encourage everyone to check your Sunday papers and even check online for coupons.  Visit the websites of your favorite sunscreen product and “Like” their Facebook page.  Often times, you’ll be offered coupons not otherwise offered.  Also keep an eye out for sales as the products will certainly be offered on sale as spring and summer approach.  It’ll help ease the stress in your wallet while you continue protecting yourself.

Also, don’t forget the less expensive preventative measures:  wear protective clothing, wear a hat, and simply stay out of the sun, especially at peak hours of 10AM to 4PM.

But regardless of the cost of staying safe, remember one important fact.  No matter the cost of expensive sunscreen products, it’s FAR less expensive than the cost of having melanoma!

Black is the New Pink: The First Year

It’s been one year since I published the first blog post from “Black is the New Pink.”  I could never have imagined when I first started what an impact this blog would have on my life …and I hope it’s had a positive impact on others. 

In celebration, I’d like to turn on the “way back” machine and add some additional comments and insights to my top ten read posts (spoken in Casey Kasem’s voice)…

#10 – What’s the UV Index Where YOU Live?

I have tried to write a mix of strictly informative pieces within the opinion pieces.  This one was such a writing, and I consider it one of my favorites for a couple reasons.  First, it brings to light the story behind the EPA’s UV Index and it showcases some cool graphs and a neat gadget.  Most importantly, it inspired me to write my local TV news station and ask why they didn’t post the UV Index in their weather forecast?  Within a few weeks, this very station started to show the UV Index!  I can’t be sure that my email had anything to do with it, but if it did, it goes to show how one voice CAN make a difference.  I encourage you all to share your voice.

#9 – Linked to Pink?

There was a study done that states breast cancer and melanoma could have a genetic predisposition for one another.   I wrote this a day or so before October…breast cancer awareness month when the whole world turns pink.  Here’s a lot of pink envy in the melanoma world (and other cancer worlds as well) so I found it interesting that melanoma world might have a stronger connection than we thought to the pinkies.  Melanoma awareness could use a boost…and riding the coattails of the pink wave might help our cause.  Of course this was prior to the recent backlash of the Susan G. Komen scandal.  

Another reason I enjoyed this bog post was that I attached my first (and only) attempt at a video message, which was silent.  Since “the Artist,” also a silent movie, won the Academy Award for Best Picture, I’d like to think I set a new trend.

#8 – Occupy Tanning, Inc.

A tanning company called Tropi Tan posted the benefits of healthy tanning in the Q&A section of their website.  They refuted the “falsehoods” of why tanning is supposedly bad for you.  This pissed off a lot of melanoma warriors and soon, many molemates started to flood Tropi Tan’s Facebook page.  Eventually, the comments were deleted, but witnessing the swarm of individuals that gathered upon this website was amazing to watch.  As I stated above, one voice can make a difference.  This event showed how many voices can have an even greater impact!

#7 – What is Black is the New Pink?

The inaugural posting.  I stated “I hope to add to this blog on a regular basis, sharing Melanoma related links, hints and local events in the Raleigh, NC area and perhaps nationwide.  And in May, which is Melanoma Awareness Month, I hope to share a daily factoid to help others become more aware.”  It seems my mission has turned from local to nationwide and global…and my daily factoids have continued way beyond the one month.

#6 – Talking About D Facts

This was written around the time that Dr. Oz made his famous “rethinking tanning beds” gaff.  The greatest “benefits” attributed to tanning beds was Vitamin D absorption.  I did a little reading and shared the facts of Vitamin D, along with some personal commentary.  I didn’t expect this post to have a large readership, but it far exceeded my expectations.  I’m so glad that these facts were shared and that they inspired discussion.

#5 – “People Need to Know…”

My blog site was initially and continues to be written in honor of my brother.  I’ve written personal stories and accounts of my relationship with Jeff and his struggles with life and death with melanoma.  These are obviously my favorite pieces as they are written from deep within my heart.  I try to be careful to keep an optimistic look in these writings as I don’t want to focus so much on his death.  Instead, I try to focus on his thoughts of saving others from this dreaded disease.  In this piece, I share details of the last weekend I spent with Jeff.  During one of our last conversations, we coined the phrase “black is the new pink” and he insisted that people needed to know about melanoma.  I probably should have titled this, “People NEED to know” as that was the inflection used.  I’m so glad this piece has been so well-read, because people are starting to know.

#4 – Uncontrollable Risk Factors

This is another post of which I was surprised at the growing readership.  My work schedule in 2012 has been off the charts and I was having serious blogger’s block.  After reading all the recent tanning news and posts online, I wanted to remind people that it’s not just tanning that leads to melanoma.  I found some good facts on the Melanoma Education Foundation page and was shocked by what I saw…so I contacted MEF directly to receive clarification of these facts: 

·         Having two immediate family members (parent, child or sibling) having had melanoma gives you a 100% chance of getting melanoma yourself! 

·         Having many atypical moles and having one immediate family member having had melanoma also give you a 100% chance. 

I believe these facts shocked others as well.  I hope these shocking facts extend well beyond the melanoma community and enlighten those who need to know.

#3 – Eric’s Story

I wanted to share the story of Eric Sizemore.  I posted this a few weeks before his passing.  I thought the video series that he and his wife Jill put together was the most incredible testimony to melanoma’s evil rage.  As I state in the blog, their videos were real, raw, tender and difficult to watch.  I still find that this posting gets viewed, even today by people searching “Eric Sizemore” on Google.  I’m sure he’d be happy to know that he made a lasting impact on many.  Also, his wife Jill continues to campaign and has been working hard to get anti-tanning legislation passed in Ohio.

One sense of irony is that another blogger commented on this post.  Her name was Randi and I started to follow her own blog soon afterwards.  Sadly, she also passed a couple months ago.

#2 – Pale Skin is In…Thoughts of Tina

Here’s another blog about a melanoma warrior who has since passed.  Tina Sullivan was one of the first people to comment on my blog and Facebook pages.  She was a very inspiring woman and beautiful in many ways.  She touched an amazing array of people.  Her family also continues her campaign just as Eric’s family has done.

I am proud to have crossed paths with Eric and Tina, and to have had the privilege to share thoughts on their fight.

#1 – Real People of Melanoma

Far and away, this is the most read blog post I’ve written.  It has been read three times more than any other.  And I have to admit that I put more thought into this one than any other.  For that fact, I’m selfishly proud.  But I’m also proud in that the message has touched so many.

I have found each of the people presented here to be so very inspiring.  Eric and Tina are mentioned of course, as our others I’ve corresponded with such as Christina, Karen, and Chelsea.  I never met or communicated with Amanda before she passed, but I found her story incredibly touching. 

Truth be told, there are (sadly) many MANY more “real people of melanoma.”  I correspond with a few each day and reach out to many more through this blog and my Facebook page.  I have been SO inspired by those I’ve crossed virtual paths with and am very excited at the chance to meet many in November at the AIM for a Cure Walk in Charlotte.

I hope this posting wasn’t too self-absorbed.  I merely wanted to share a bit of the journey with you and THANK YOU for making Black is the New Pink an online success.  I hope there will one day be no need for such blogs…that melanoma will cease to exist.  But until that day comes, I plan to keep this campaign going!