Amanda's Story...Michael's Mission

It’s a story repeated all too often in “Melanoma Nation.”  A beautiful young woman finds that an innocent looking mole is actually melanoma.  She discovers that the melanoma is far more serious than “just skin cancer” and enters a fight for her life.  A few such women have been fortunate enough to fight their way to N-E-D status (no evidence of disease) while far too many passed away.  Such is Amanda’s story.

Amanda Faye Brown had a pencil eraser sized mole on her shoulder.  Her husband Michael thought of it as a beauty mark.  But eventually, Amanda saw a dermatologist and it was determined to be Stage I melanoma.  It was surgically removed with the assurance that it was all gone.

It wasn’t.

In November of 2004, a small nodule was spotted on the inside of her thigh as well as a couple on her abdomen.  The melanoma had been spreading within her body for the previous two years. She was diagnosed as Stage IV.  A dozen or so tumors were discovered on her lungs and she was given a few months to live.  She fought on for longer, but died on April 15, 2006 at the age of 31.

Amanda kept a journal of her fight so as to enlighten others of the horror of this extremely dangerous cancer.  Michael had vowed to educate others so as to prevent this same tragedy in other families.  He began speaking at local middle schools and high schools and sharing Amanda’s story.  A few months ago, he published a book called Finding N-E-D, No Evidence of Disease.  The book is a compilation of Amanda’s journal entries intermixed with Michael’s own thoughts and memories.

 

 

Tomorrow, on November 12, 2013, Michael embarks on a multi-city tour to speak with over 2,500 students nationwide. He calls the tour “Amanda’s Message Tour.”  He begins in Erie, PA at MacDowell High School.  Today (November 11, 2013), he visited the regional cancer center in Erie where he entertained and shared some fun moments.

You see, Michael is the saxophonist for the legendary rock group Sha Na Na.  He told me of today’s visit to the cancer center, “I played my sax and sang a few Sha Na Na songs.  We played ‘Name That Tune!’  It was a fun moment with awesome patients!”

Michael is doing a great thing…sharing Amanda’s story, helping to cheer up those who are fighting for their lives, and educating kids on sun safety and skin cancer.  But Michael needs some help.  He has a lot of heart to tackle this tour, but unfortunately he has limited funding.  He could use our help.

I know this is a big time of year for charities and holiday gifts, so it’s not always easy to give.  I know the Charlotte AIM for the Cure Walk is upon us on November 16, and so many of you are spending cash to participate or donate.  Still, I ask that you spread the word and continue making a contribution to Michael’s mission.  He had set a goal of $6000 to help pay for the expenses of the tour (he’s driving his own car and looking for modest priced motel rooms along the way).  So far he’s raised $530…not even 10% of his goal, and his tour starts tomorrow!

If you can help, thank you.  If you can’t with a donation, then please spread the word of Michael Brown’s mission and encourage others to make a contribution.  And if you live in any of the following cities, spread the word to local media and consider attending yourself.  Here are the tour dates:

Nov 12                  Erie, PA
Nov 13                  Mansfield, OH
Nov 14                  Cincinnati, OH
Nov 15                  Owensboro, KY
Nov 18                  St. Louis, MO
Nov 19                  Springfield, MO
Nov 20                  Mustang, OK
Nov 21                  Amarillo, TX
Nov 22                  Albuquerque, NM
Nov 25                  Winslow, AZ
Nov 26                  Kingman, AZ
Nov 27                  Las Vegas, NV

For more information on Amanda’s story and Michael’s mission, please check out some of these links:

News Broadcast of Amanda’s Story

Another News Story on Amanda and Michael’s mission

Reviews of Finding N-E-D No Evidence of Disease.

Where to Purchase the book.

Where to donate to help Amanda’s Message Tour.

Comparing Survival Rates of Breast Cancer and Melanoma

I posted a recent commentary article written by someone else on my Facebook page that had a remarkable statement. “The survival rates for stage II melanoma are the same or worse than for stage III breast cancer.”  That got my attention, so I decided to dig in a little more.

A survival rate tells you what percentage of people will survive a certain type of cancer after a specified number of years.  In most cases, the survival rate is measured for 5 years.  For instance, a survival rate of 80% means that 80% of the people with that cancer survived, or were alive, after 5 years.  Conversely, 20% of the people died.  This is calculated based on the study of hundreds or thousands of people who have been diagnosed with the various cancers.  As I mentioned in an earlier post, “surviving” may not mean you’re cancer free or not undergoing treatment.

As I see it, the survival rate of a cancer dictates just how deadly that cancer can be.  However, a cancer with a low survival rate might not be the more widespread killer.  As stated in the original quote, melanoma has a lower survival rate than breast cancer, but statistics also show that there are about 5 times more cases of breast cancer per year than melanoma cases.  Breast cancer is a grenade which affects many while melanoma is a stone cold assassin which targets a few with greater efficiency.

How do the different cancers compare?  I checked into the American Cancer Society’s website and found the survival rates for each stage for both breast cancer (obtained from the 2013 National Cancer Institute’s SEER database) and melanoma (obtained from the 2008 AJCC Melanoma Staging Database):

Breast Cancer		Melanoma
Stage	Survivor Rate	Stage	Survivor Rate
0	100%	Not reported
I	100%	IA	97%
		IB	92%
II	93%	IIA	81%
		IIB	70%
		IIC	53%
III	72%	IIIA	78%
		IIIB	59%
		IIIC	40%
IV	22%	IV	15% to 20%

 

As you can see, there are indeed levels of Stage II melanoma which have a lower survival rate than Stage III Breast Cancer!

So what does this say?  It implies that breast cancer research has been very successful in recent years, thus increasing the overall survival rates.  In fact, according to the American Cancer Society’s “2013 Cancer Facts & Figures” report, breast cancer has an overall (all stages together) average survival rate of 89%.  Melanoma’s overall survival rate is 91%.

Hmm... that is interesting.  Is research responsible for melanoma’s higher overall survival rate?  Most likely not.  These figures were taken in 2008…before incredible medical advances such as Yervoy and Ipi.  Melanoma has always had a high OVERALL survival rate because so many more people catch melanoma in the earliest stages as opposed to many other cancers.  Why?  Because we can see it on the skin!  While this seems like great information, it hasn’t been the best news for melanoma researchers.  After all, if a cancer has such a high survival rate, why pour money into researching a cure when other cancers need more desperate help?  I’m sure this has been the challenging argument for melanoma researchers for years.

It’s important for those donating money to understand the nature of advance stage cancers.  Stage II breast cancer has a 93% survival rate.  Stage IIC melanoma has a 53% survival rate!  That’s an alarming difference!  This gap can only be filled with additional research.

To me, this set of data tells demonstrates two things.  First, as I said before, advanced melanoma is a stone cold killer.  But secondly, and more importantly, melanoma can be defeated if detected early.  There have been great things happening to further successful melanoma treatments, but so much more needs to be done.  The greatest weapon against this assassin is you!  Get your skin checked annually by a dermatologist and check your own skin monthly.

 

Post script:

As I reviewed the data found in the American Cancer Society report, “Cancer Facts & Figures 2013,” I noticed the survival rates of other cancers.  In particular cancers of the lung and pancreas have remarkably low overall survival rates.  Compared to melanoma at 91%, lung cancer comes in at only 16% and pancreatic cancer at 6%.  Stage IV rates for each respectively are 4% and 2%.  More people will die of lung cancer this year than any other cancer.  Cancer of the pancreas is statistically the deadliest of all cancers.

November is the awareness month for both Lung Cancer and Pancreatic Cancer.  The pink ribbons and football cleats have been put away now that October is over.  No one will likely be wearing white (lung) or purple (pancreas) in November…at least not for awareness.

Please continue your support for melanoma awareness and research, but take some time this month to lend your heart and hand to pancreatic cancer and lung cancer…the latter which took my mom’s life in 2005.

Giving...for the Magic

Last week (in October, 2013 for any historians that find this blog post in the future), I attended the MRF Miles for Melanoma Raleigh Walk (the 3^rd Annual Amanda Wall – Corey Haddon Memorial Walk).  The event had a near miraculous feel about it.  Nearly 225 walkers participated and over $45,000 dollars was raised!  That is so many more people and so much more money than any of us expected.  While the majority of walkers were local, several traveled many miles from Northern Virginia and Charlotte.  Compared to last year’s Amanda-Corey Walk, this had a much more “Big Event” feel.

Last year in November, 2012, I participated in the Charlotte AIM for a Cure Walk.  That event raised a lot of money as well plus also had many walkers.  Right after the walk, I wrote a blog post reflecting on the event.  My closing paragraph read as such:

 This AIM walk is one of many…and AIM is one of several organizations that host such events.  EVERY walk is special.  Each event raises funds and awareness. Don’t let all the blogs and Facebook posts make you think that this was the ONLY event in which to participate.  Hardly.  It’s one of many, and I encourage everyone to find such an event near you.  AIM.  MRF.  Miles Against Melanoma.  Outrun the Sun.  Each one helps our campaign to raise awareness.

I have the same thought today.

I guess what I’m trying to say is…walk.  Attend an event.  Go to a golf tourney that raises funds for melanoma awareness or research.  Attend a free MRF or AIM seminar and give yourself the gift of knowledge.  Teach a middle school class about sun safety.  If you participate in an event with others, even stranger and particularly with survivors and warriors, you won’t regret one second.

In this day and age, it’s hard to give.  Money is tight (boy don’t I know that recently) and time is tighter in our busy schedules.  But I encourage you to make a moment available to give something.  Save 25 cents a week to donate some day in the future.  Pencil in one weekend out of the year to give time for a walk.  Spend 5 minutes of your Facebook time each night sharing articles on awareness.  Send a “thinking of you” text to a survivor/warrior.

Give.  Not “til it hurts,” but until you can’t stop smiling.

 

Postscript:

I have many friends walking in the 2014 Charlotte AIM for a Cure Walk next month.  I won’t be able to attend this year (which is why I pour so much of myself into the MRF Walk), but I ask that you support one of the AIM walkers.  It doesn’t matter which…the money will go to the same place.  Click here for the donation page.

There is also another event in North Texas affiliated with the Miles Against Melanoma organization.  Click here for their donation page.

I invite you to check out my “Melanoma Awareness and Fund-RaisingEvents” link for many such events.  I’ll be adding 2014 events soon, but there are still plenty of 2013 events scheduled.  Look for one near you!

The Speech

I was nervous.  I don’t like being out of my comfort zone and public speaking qualifies as being WAY out of my comfort zone.  But I had a message I wanted to share, so I spoke.  I shared Jeff’s story and message to a crowd of around 200 walkers who were anxious to start walking.  I wondered if I would be heard…if the message would be heard.  I wondered if I would pass out.

But Timna spoke before me and did a fabulous job.  And I knew she was nervous…beyond nervous.  But she shined and thus gave me confidence to speak.  (Thank you Timna!)  

I wish I had my speech on tape.  There was a camera crew on site to film a video about the entire Amanda Wall – Corey Haddon Memorial Walk experience, so perhaps one day I’ll have it to share.  Such a tape would catch the adlibs while the train whistle blared behind me…and when I challenged anyone to debate on the (lack of) health benefits of tanning.  Oh, and I was wearing a tutu the entire speech.  But until I have such a video, I’ll share what I wrote for the speech instead.

One more thing the copy below doesn’t share is the joy I felt when someone approached me afterward, promising to make an appointment for the dermatologist on Monday morning.  That, my friends, is exactly why it was worth stepping far from my comfort zone.

The Speech:

A little over a year ago, I was fortunate enough to meet Don, Rebecca, Chap and Diane.  I never met Amanda or Corey, but through their family and friends, I discovered that both were amazing girls that were taken from us far too early by melanoma.  Like many of you, I walk here today in their honor.  But I also walk in honor of my brother Jeff.

In 2004, Jeff had a large ugly mole on his back.  His wife convinced him to see a dermatologist.  He diagnosed it as early stage melanoma and had it surgically removed with clear margins.  That means the melanoma was completely removed.  But that was to be expected…after all, it was just skin cancer, right?  I mean, you just cut it out and go on with your life…no big deal.  At least that’s what everyone thought…me included.

But Jeff knew it was a big deal…he knew the seriousness of melanoma.  He knew that he dodged a bullet.  He knew he had a new lease on life, and he started to live more healthily.  He lost weight, got his diabetes in check, exercised more, and stopped smoking.  He encouraged others to be sun safe and convinced many to see their dermatologist…including me.  He became involved with the Special Olympics and Relay for Life.  But at the Relay for Life, he’d never visit the survivor’s table to get a special ribbon or t-shirt.  Jeff felt that he wasn’t worthy of being called a survivor because he hadn’t undergone the radiation or chemotherapy that so many others had. But he was wrong.  He was a survivor because he suffered the mental anguish of knowing he had cancer.

In 2010, Jeff visited his general practitioner for a physical.  The doctor said Jeff was in the best health that he’d seen in years, and he asked Jeff if he had any questions or concerns.  Jeff responded that he felt great, but that he had some dizziness, that letters would seem to move as he was reading, and that he was having memory lapses.  The doctor joked that it was probably due to getting older, but decided to order an MRI to make sure things were okay.

What they found were three one-inch tumors in Jeff’s brain and numerous tumors in his lungs.  The melanoma was back.  You see, for anyone that has had melanoma, there is a one in three chance that it will reoccur.  This is exactly what happened with Jeff.

So in August of 2010 after an otherwise healthy check-up Jeff was diagnosed with Stage IV melanoma.  In November, three months later, Jeff died.

I visited with Jeff in September, only one month after his diagnosis.  His health has deteriorated quickly.  He was bloated from the steroids, his hair was gone, and he was using a walker because he was rapidly losing his motor skills.  When he talked with you, he would stare through you…partially because he was slowly going blind and partially because he had trouble recognizing people.  I had to remind him who I was several times.  But we still had some good conversations about our childhood and other misadventures. 

He told me a story about how he went to the University of Pittsburgh Cancer Center for cancer treatments.  He visited the gift shop to look for anything related to melanoma.  Because the color for melanoma is black, he sought out black ribbons…black wristbands…black car magnets.  But all he could find was pink.

Jeff and I both have family members and friends that have battled breast cancer, so we had nothing but respect for the pink breast cancer awareness campaign.  But Jeff told me that he was SO disappointed that there was nothing black at all.  Jeff said to me, “Alan, I wish that just once, black would be the new pink.”  I have a blog for melanoma awareness and that’s what I named it to honor my brother…Black is the New Pink. 

But I’m not here to promote my blog, I’m here to share Jeff’s message which was the next thing he told me in our conversation.  Jeff said, “People need to know.”  That’s all he said, but I knew what he meant.

 People need to know about melanoma.  People need to know that one person dies from melanoma every hour in the U.S.  People need to know that 1 person out of 5 is diagnosed with potentially disfiguring skin cancer, and 1 out of every 50 will be diagnosed with melanoma in their lifetime.  People need to know that melanoma is the number two cancer killer for people ages 15 to 25…so it’s not just an old person’s disease.  People need to know that Bob Marley died from melanoma on his toe…so it’s not just a fair-skinned person’s cancer and it can occur anywhere on the body.

But people need to know that you CAN go out and enjoy the sun.  Jeff loved the outdoors.  He hiked, geocached, golfed and worked in his garden.  He wanted people to know how to be safe in the sun.  People need to wear sunscreen…every day…even on cloudy days.  People need to wear hats.  People need to wear sunglasses, because melanoma can occur in the eye!  People need to stay away from tanning beds because there is not one healthy benefit to using a tanning bed…period!  But most importantly, people need to know to see their dermatologist.

Your skin is your largest organ!  Your skin is you most exposed organ!  Your skin is your most damaged organ!  You visit your dentist once or twice a year... you visit your family doctor once a year, so it only makes sense to visit your dermatologist once a year.  If you haven’t seen your dermatologist in a while, I encourage you to call and make an appointment Monday morning!

People need to be aware of melanoma.  But people also need to take action against melanoma.  You are taking action today by participating in this walk.  Please continue to take action after today by sharing the stories you hear today.  Take action by wearing sunscreen, avoiding the tanning bed,  and visiting the dermatologist, and encouraging others to do the same.  If you have to wear a black tutu to get their attention, please do it!  Do so in honor of Amanda, Corey, Jeff, and the many thousands who are touched by melanoma every day.

Thank you.

No Man is an Island

It’s hard to believe that it's been three years since I last hung out with my brother.  I shared that weekend with you before.  And I’ve certainly shared this photo with you many times:

There are several reasons I’m so attached to this photograph.

• It was the last photo taken of just me and Jeff.

• It’s a damned good photo of us both.  Jeff doesn’t look like a man who only had three months to live.  Despite the cane, he looks strong and happy.

• We’re hugging.  That might be the only photo of us hugging…ever.  I think that act alone was a wordless way of saying we knew this photo was to be the best one.

• We were geocaching together…something we both shared a joy for at the time.  (I’ve rarely been caching since his passing.  One’s passion lacks, well, passion when the person you enjoyed it with has passed on).

• I like where it was taken.

Back to the caching.  We were on a quest to make my 300^th cache find the one he had placed for other to find.  I wanted the milestone to be his cache.  However, I had about 293 cache finds thus far, so we had to grab a few before his.  Number 299 was this one.  Here’s an aerial view of the location:

The island of No Man is an Island

 

 

I had taken photos of other cache finds that day, but something told me that I needed to take our photo here.  On this island was a picnic table on which to place my camera at the perfect angle.  It was like the photo was meant to happen.  After the photo, we found the cache in the lone tree on the island.  We read the title.  “No Man is an Island.”  I smiled and said to Jeff, “kind of appropriate, don’t you think?”  He responded that he agreed, and we did an awkward one-armed hug as I stabled his stance as we turned around to leave.

I reminisced about this day and decided to check in on this geocache on the official website.  It turns out that mere weeks after we found this cache, the tree was cut down and the cache disabled.  We were nearly the last to find it.  It’s as if the geocache location remained just long enough for us to find it and have out last photo taken. 

Postscript:

I wrote this piece on September 26, but wasn’t able to share my thoughts with you until tonight.  Since then, my wife Kim and I shared our 17^th wedding anniversary.  The best man at my wedding was Jeff:

 

Jeff choking me..."Don't do it!"  :)

Kim and I spent our anniversary (with the kids in tow) with a weekend at Myrtle Beach, South Carolina.  While there, we had the good fortune to meet up with my sister-in-law Debbie, Jeff’s wife.  Debbie took Jeff’s death very hard…VERY hard.  But I’m happy to say that she is well and loving life again.  She’ll always love and miss Jeff…as we all will.  I hope that Debbie realizes that no man is an island, and we’re here for her.

 

Kim to my right and Debbie to my left.

 

Mailing Outrage

Imagine having lost a child to a killer.  Imagine having lost the child only a few months ago and her first birthday in heaven was approaching.  Imagine checking the mail one day, and you find a birthday present for your child…from the killer.

In essence, this just happened to Susan Hayes.  You may be familiar with her daughter Jillian’s story.  She was a young woman who was diagnosed with advanced melanoma at a far-too-young age.  She blamed tanning for her melanoma, being quoted as saying, “laying out in the sun and tanning beds pretty much screwed me.”  Yet, despite Jillian’s difficult illness and eventual passing, she and her mother worked diligently to raise awareness.  Erecting awareness billboards in Michigan and North Carolina, sharing their story on TV, and sharing the deepest feelings on Susan’s blog…I believe it’s safe to say that they have been responsible for saving the lives of many others with their efforts.  If ever there was a candidate for a Susan B. Komen of melanoma, Jillian would be near the top.

Today, Susan checked her mail and found the following:

 

Yes, it’s a free birthday gift from the very tanning salon that contributed to Jillian’s death…sent to Jillian.

I can’t imagine the range of emotions that Susan must have felt.  I felt outrage…and I’ve never met the family.  I have no doubt that Susan will turn this sick irony into a spin to raise awareness even more.  She’s good that way.

I understand that TropiTan had no malicious intent by sending this to the Hayes household.  I once worked for a company that dealt with mass mailing, and there’s no thought process at all.  Letters or postcards are sent to everyone in a database, period.  Jillian was probably in the database as a past customer or merely because she was listed as a local girl in her prime tanning years.  Regardless, I’m still mad at this mailing.  Just read the postcard! 

“Look amazing for your birthday with a head turning, jaw-dropping golden glow that is GUARANTEED to get you noticed.”

While mailing this to Jillian was an unfortunate and ironic mistake, there are hundreds of others that will receive this same “gift” in the mail with the intent of luring young image-conscious girls into the tanning world.  The industry will claim health benefits and safety measures, but will most likely never mention a word about the increased chance of a melanoma diagnosis by 75% or more.  They won’t mention the wrinkles and aging that occurs (perhaps a more effective message to these girls).  They won’t mention that tanning is banned for minors in several states and other countries.  No, they’ll merely offer a birthday “gift” from their new “friends” at TropiTan.

That is, assuming they’ll be around for the next birthday.

One Family. One Fight.

Erika Lynan had a mole on her left arm several years ago.  After it became asymmetric, she saw a dermatologist who performed a biopsy.  It was low-stage melanoma.  Her mole and the surrounding area were excised with clear margins and all seemed well.

A few months ago, Erika, a 43-year old single mother of 3, had flu-like symptoms.  She visited her doctor in Alabama and it was discovered that her melanoma had returned.  Stage 4.  Her marrow, her brain…her melanoma seemed to have metastasized everywhere.  Her situation can be considered challenging at best.  Erika has a hard fight before her.

Her sister Mary lives in Raleigh, NC.  After emotionally “dealing with” Erika’s diagnosis, Mary felt she had to do something...anything...but wasn't sure how from so many miles away.  Her husband encouraged her to seek the support of her family…her Raleigh family.

Mary tends bar at the Backyard Bistro in Raleigh.  In the shadow of both the PNC Arena (home of NC State basketball and Carolina Hurricanes hockey) and Carter Finley Stadium (NC State football), the restaurant/bar is a popular gathering place for the NC State Wolfpack Club and pre-game crowds.  Sports aside, the management reached out to Mary and offered to organize a fund-raiser for Erika.

In three short weeks, they called their key contacts (including Wolfpack Club rep Bob Bell) and arranged fantastic raffle prizes and silent auction items to raise funds.  They provided a catered lunch of BBQ and low-country crayfish while music was provided by The Magic Pipers.  And magic indeed was the event.

Well over 100 people attended the event and quite a bit of money was raised from the aforementioned raffle and auction. Signed hockey jerseys and posters, rounds of golf, original artwork…many incredible prizes were claimed…with all proceeds going to Mary’s sister.

I have attended a hand full of melanoma awareness/fund-raising events and have been touched by the magic of each.  People from all walks of life show up to these events, and today’s event proved no different.  And what was most magical was that some walked away more aware…knowing to be more diligent in the sun and realizing they should make annual appointments to see their dermatologist.

Below are some photos of the event, but the true aura of this and many events simply cannot be captured on film.  I encourage all of you to seek out a local event and attend.  Whether it be a 5K walk, a pub crawl, a golf tourney, or whatever…attend and be enlightened.  Today’s event will prove to do good for Mary and Erika…and it proved to be good for me as well.

(A personal note to those I met at the event…I hope I got all the names and spelling right.  Also, thank you!  Also, please feel free to contact me at my email address at fightmelanoma@live.com ...especially about the upcoming Miles Against Melanoma Walk in Apex in October.  And Tom…I’ll see you at the (WVU) tailgate party you won…J)

I loved this...serving some brews and offering up sunscreen!

 

See!  They really did have sunscreen...and people were applying it!

 

Folks were offering up donations while grabbing info on skin cancer.

 

Info from the AAD was posted all over...

 

...and additional reminders were everywhere you looked...

 

...and where ever you walked!

 

Black ribbons were handed out...I love this saying, "Stick it to cancer!"

 

Good food (BBQ and low-country boil)

 

Good prizes (Go Canes!)

 

And a Great Team!