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. 

The Care and Keeping of Your Skin

We took our twins to the pediatrician last week for their annual check-up.  They're both nine years old, so the doctor asked us if we'd had a talk with my daughter regarding upcoming changes in her body.  We had to some extent, but he recommended some assistance from a book by the American Girl folks called "The Care and Keeping of You."

I then asked the doctor about such literature for my son and he shrugged.  Apparently there are a couple of books out there, but none as good as this one for girls.  I suspected that I'd play the role my father had when he tossed me a Playboy during my adolescent years and stated, "Here...figure it out.  But ignore Page 47...that never happens to anyone."

After the appointment, we headed for the library as we often do every week or so.  My daughter found the book immediately (we had found a similar one for my son...without a centerfold) and she started to read before we returned to the car.  I had glanced at the table of contents when checking the book out...topics included "Braces," "Bras," and "Big Changes."  I decided to make sure that all book-inspired questions from my daughter would be immediately passed along to my wife as I vowed instead to stop time and keep both my kids at this perfect pre-teen age.  But as we drove home, I heard my daughter inquisitively say, "Daddy?"

"Yes?"

"Can I ask you a question?"

I looked at my wife as she casted her "oh no you don't" gaze back at me.  "Sure honey," as my mouth got dry.

"Do sunburns cause wrinkles?"

"Um...yes they do.  Why do you ask?"

"There's a section here on the sun and how it can damage your skin.  It even mentions skin cancer!"

We discussed this as well as the other questions I eventually passed along to my wife (after a hard shoulder punch) until we finally arrived home.  I mentioned "Just Dance 3" as we walked in the door as a successful diversion.  The kids flew to the Wii as I grabbed the book to take a closer look.  Sure enough, at the top of Page 34 was the title "Sun Sense."  The first paragraph read as such:

You may think a tan looks great now, but wrinkles and spots don't look good on anyone.  Doctors agree: there's no such thing as a safe tan.  All skin, regardless of type, is damaged by the sun.  Exposing your unprotected skin can give you a blistering-hot burn and lead to allergic reactions - and skin cancer.

The page goes on to discuss peak times when the sun is most dangerous, an explanation of SPF numbers, and a reminder to apply sun screen even on cloudy and winter days.  What an incredible surprise to find this information in such a well-read (over 3 million copies sold) and recommended book!  It gives me hope that, while my little girl grows up, she'll be getting good advice from others as well as from me and her mother.

As for my son...he just needs to ignore Page 47.

AIMing for November 17, 2012

In late October of 2010, I had a thought of how wonderful it would be to meet some of the fellow bloggers in the Hotel Melanoma world.  I have read dozens of blogs with many of the writers sharing inspiring and moving thoughts.  Some have become good “virtual friends” while others have sadly passed away in their fight against melanoma.  Still, I wondered what could happen to bring some of us physically together.

Literally that same evening, I received an email from Rev. Carol Taylor, founder of the Melanoma Prayer Center and the Melanoma Grief Chapel, as well as writer of the blog “Attitude of Gratitude.”  She was asking if I’d be willing to join her and two others (Chelsea Price of “Adventures With My Enemy Melanoma” and Rich McDonald of “Hotel Melanoma”) in organizing some type of fund-raising event.  Wow…talk about timing.

We had collectively decided to organize a fund-raising walk…but eventually realized the logistical challenge of four people across the country trying to organize one single event.  I’m not sure we could have pulled it off, but then Rich (I think) suggested that maybe we should pull together our efforts and support an already existing event.  Brilliant!  As it so happened, Chelsea was about to participate in the AIM for a Cure Melanoma Walk in Charlotte.  Based on her incredible experience, and the support and assistance from event organizer Anne Bowman, it was decided that we would work towards raising money for the 2012 AIM for a Cure Melanoma Walk!  But best of all, we’d all finally be able to meet one another.  Even Rich said he’d come in all the way from Colorado!

I’m happy to announce that a date has been set for the 2012 walk…November 17, 2012.  I’m sure we’ll have more details as the date draws closer, and soon some of us may start soliciting donations. Honestly, asking for money has never been my strong suit as (1) I also have many financial struggles and find it difficult to give hardly any money and (2) I’m just not an “asking” person.   But, eventually I will ask for you to either join us in Charlotte, NC on November 17, 2012…or to support one of us as we walk to support the fight against melanoma.

November 17 is the 322^nd day of the year.  I am writing this on January 2^nd, the second day of the year.  That means you have 320 days to save up to donate.   Saving one dollar a day would allow a donation of $320!  Of course, that's a lot of money to many (including me), so consider setting aside only a quarter a day.  That itself would add up to an $80 donation!  Even a dime a day would add up to $32…so crack open that jar and start dropping in your change today.  In a few months, we’ll be asking for your help.

Last year the Charlotte event raised over $35,000. My personal goal (not endorsed by others yet) would be to exceed $50,000 in 2012.  What a wonderful gift to the world…all from a few coins a day! 

Even more wonderful would be if you could join us in Charlotte!  Putting faces and feeling hugs from all these people we’ve read and shared with would make it the best day imaginable.  I would love for each of you to be a part of it!

I'll have more to share on this event soon.  Stay tuned!

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.

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.

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.”