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!

Real People of Melanoma

This post is meant to be read by those who think skin cancer is no big deal. 

"It can be cut out and then it’s gone."

"A tan is more important than worrying about simple skin cancer."

"I have to die of something, so it might as well be skin cancer."

Have you muttered any of these words when reading an article about the dangers of tanning?  Have you walked into a tanning salon, defiant of the literature received on skin cancer?  Well, feel free to continue doing so, but please take a few minutes to read this post. If you still have the urge to go tanning or avoid having that mole looked at...fine. 

What I want to do is introduce you to some real people.  I started to blog almost a year ago as a way to cope with my brother's death.  Yes, he died of melanoma (that's the nastiest skin cancer in case you didn't know)...and I promise not to make this a sappy read and bore you with his details.  But in the process of blogging and sharing my thoughts, I've come across some real people that have had real experiences with skin cancer.  These are not “models” or medical anomalies showcased as freak shows…these are real people facing different kinds of skin cancer every day. 

Christina has skin cancer on her face.  It's not any type of massively deforming tumor or obvious cancer other than a few spots on her face, but its real cancer nevertheless.  Really, it appears like it's just a condition on which one can treat with a topical cream.  And that's kind of what's Christina went through a few months ago.  She was required to apply a topical chemotherapy to her face for two weeks every year.  Yes, chemotherapy.  It's not the blood infusion type that conjures up the awful images of "real" cancer...just a simple skin application…one that peels away the face, quite literally.

She said in her blog that the pain was unreal...and at night when she slept (something she was unable to do most nights) her face literally stuck to her pillow.  It hurt to smile...it was excruciating when she yawned...it pained her to talk.  She's a teacher…so she had to teach through the pain.  Her face is mostly healed now, but the next year and round of chemotherapy will come only too soon for Christina.

Karen is a mother who noticed "an ugly freckle" on her leg.  See it here on her right calf?

Frankly, it looked like a simple mole seen on many people. She had a dermatologist look at it and discovered it was Stage 2 melanoma.  (Stage 4 is the worse).  She had the mole "simply cut out" successfully...here's what her "simple cut out" looked like right after the mole removal.

You see...when they "cut out" any skin cancer, they cut out a large area because skin cancer spreads.  It spreads FAST!  A small 3mm mole may result in a several inches cut and scar along one's leg, chest, neck or face.

Another real person is Chelsea, age 24.

She's had surgery to remove the cancer from their skin and lymph nodes, but has had to continue the fight because melanoma has a nasty habit of spreading...even when it’s thought that it’s been completely removed.  In fact, there’s as much as a 30% chance of recurrence of melanoma for those who had it before.  You can that here see that her neck and under her arm have been scarred...but she's also had to go through quite a few other procedures.

In short, it's not been a fun ride for Chelsea.  She’s doing pretty well now, she's had many days of being very sick and has had to spend a lot of time and money going to a cancer center in New York for her treatment.

Oh yeah, that's a good point...tanning sessions might be expensive, but it's nothing compared to the expense of having cancer.  We’re not talking hundreds, but thousands of dollars.  For Stage 4 melanoma patients, there’s one drug that costs $30,000 PER DOSE!  And if you think insurance will cover everything, you better think again.  Not only does each person here have to battle cancer each day, they have to battle insurance companies even more so.

Here's another lady named Tina.  I have no cancer photos of Tina...just this nice one with her and her daughter. 

Tina was doing pretty well, but then her melanoma returned, got nasty, and spread to her bladder.  She said it was a very painful experience...and it caused other complications.  Tina passed away a few months ago...leaving her daughter and husband to continue fighting the insurance companies.

I have one more lady to introduce you to...Amanda.  I admittedly haven't talked to this girl like I have the others, but her story is pretty powerful.  Here's her photo before she got skin cancer.

Here's her photo after the tumors invaded her face and body.

There’s really not much more I can add that the photos don’t already say.  You can watch this video to see more of her story.  Amanda died at age 31.

Skin cancer doesn't affect only pretty young women.  In fact, more guys suffer from the disease than women.  However, many guys just don't share their photos and thoughts as much as women do.  You know how guys are...tough as nails.  But Eric decided to share his entire battle on You Tube.

He discovered his cancer as a mole on his ankle...like so many others.  He fought for a long time, but the cancer just kept on coming.  It invaded his lungs, spine, brain and his entire body.  Now I apologize for the graphic nature of this next photo...but I wanted to show you a photo of Eric's leg...not long before he died.

Yes, that’s his leg.  His flesh was literally rotting away as his grapefruit-sized tumors penetrated his skin.  But believe it or not, Eric was "lucky" in that he became paralyzed from the chest down and couldn't feel this painful condition.

Again, these are REAL people...not rare medical subjects, but real people encountered online while I wrote my blog.  Each has his or her own story, battles and losses and some successes.  I wanted you to meet these people because even the best skin cancer Public Service Announcements convey pretty people that look normal.  They share their story of survival, but you really don’t get a good feel for the true pain they went through. 

Your chance of getting skin cancer is pretty high...about 1 in 5.  Admittedly, melanoma is the rarest form of skin cancer, so you have less chance of getting that...about 1 in 50.  But after you’ve seen these real people that have battled melanoma, it’s easy to see how one should do everything in their power to prevent it.

There are two main things to remember with regards to preventing melanoma.  First…avoid the UV rays.  It’s obviously impossible to avoid the sun completely, so wear sunscreen EVERY day…no matter the weather.  And do NOT use a tanning bed.  It’s concentrated UV rays and there’s absolutely nothing healthy about it.

Secondly, visit your dermatologist annually and check your skin yourself monthly, if not more often.  Early detection is key!  Get to know your skin and notice any changes.  If you see something suspicious, don’t wait the year…see your dermatologist now!

Wear sunscreen and get checked.  It’s that simple to avoid becoming one of the real people of melanoma.

Post Script:  I appreciate those who shared their photos for this blog post.  I believe I received permission to use all these photos over the last few months.  If I am mistaken, please contact me at fightmelanoma@live.com and I will remove ASAP.  Thank you again.