Thursday, May 31, 2012

The End Of Melanoma Awareness Month Is Only The Beginning!

And so it is that today brings Melanoma Awareness Month 2012 to a close and what a month this has been! Billboards! TV interviews! Blog and magazine interviews! Testifying before various committees to push for tanning bed bans worldwide! New websites! A very real push from the melanoma community to be seen and not heard only. We're putting real faces on a real disease! Ideas are circulating and plans are being made and implemented to keep the momentum going and growing. This is an exciting time to have melanoma or be touched by it in some awful way.

Wait. Did I say that? Well, as odd as it may sound, yes, I did. See, we've got it. No matter how it happened, we've got it and we're going to give it our all to make sure this disease gets stopped in its tracks. We've got it and, for now, we know our numbers are going to grow and more people will die from it...but...we're working towards the day when that's no longer the case. We're doing everything we can to rally the troops and make sure our story doesn't replicate itself in other families in the future.

God is at work and making us part of bringing this disease down! He's using and redeeming this truly God-awful killer in our lives and, with that, God is using us to build a strong, thriving grassroots community that's bonding and working to bring down the Tanning Industry. We're also bonding and working to talk about the genetics of melanoma, how this disease operates, and we're getting quality information out there. We're building support mechanisms and communities, all of which are vital to bringing this disease down. And we're bonding and working together to spread safe sun practices. The sun, per se, isn't an enemy like the Tanning Industry is. The sun is part of God's creation and absolutely necessary for life on this planet. But we've got to be smarter when we're out in it and exposing our children to it. The sun is what it is and it's not going to change. We're the ones who must change.

Now, the Tanning Industry is another matter entirely! That's an entity made up of people who can, will, and do get melanoma and/or basal cell skin cancer and/or squamous cell skin cancer. The problem is they sell the means and the lies by which a growing number of people, often young people of ALL races and both genders, get these diseases. But I've blogged plenty about the Tanning Industry. We just need to remember it's made up of real life, breathing people who just don't seem to understand who they're up against.

Melanoma is one helluva motivator let me tell you! But it's not all-powerful like God is. There's a strong core of us, and we're growing, who are people of faith who live with melanoma in some way. Many of us have it. We may be NED, like me, or we may be battling active disease. We may be the parents of a child with the disease or the parents of a child who died from melanoma. We are the spouses and the siblings and the children and the close friends of those who fight and of those who have died. We are bound together by melanoma and by faith and a determination to place our journeys in God's Hands praying that He take how this disease has manifested itself in our lives, break the control it has over us, bless our fight, and use us to bring it down.

And we see signs all around us that God is doing exactly that and we're excited to witness good things happening! When a person lives with a disease like melanoma, we need to see good things happening and we need to be a part of those good things. We bear strong witness to the tolls this monster takes. We need to see beauty rise from the ashes and witness that melanoma will not have the last word. The last word always belongs to God and that last Word is always one of truth, love, hope, and victory.

Lies abound in the world of melanoma and I've blogged about those, too. So does hope! Death abounds in the world of melanoma. So do miracles and so does life! People who peddle instruments of melanoma (tanning beds) abound. So do people who who push for truth, research, and legislation against those awful coffins.

As I think about the strides we've made and how God is moving and raising us up and blessing the battle and using us, I am so often reminded of David and Goliath. I am so often reminded of how God has always, ALWAYS, stood with the least, the last, and the lost. God has always stood on the side of truth and life and God doesn't back down from earthly "kings" and "authorities" and "feel-good gurus of all kinds" and "peddlers of instruments of death and destruction." God doesn't care about, nor honor, their pedigrees or names. He's not looking at the number of "likes" on their Facebook pages. And God cowers before no human being no matter what their TV rating.

But God does care about them as people. As God is surely bringing down melanoma and is surely bringing down the Tanning Industry, God's going to make sure the people get the message. And as some of them will get melanoma...the odds being what they are, God already has a community in place to embrace them. We understand they bought the lie. They bought the lie before they could sell the lie. Many of us bought that lie as well and understand how beguiling the lie is. As they join our community there's a place for them at the table to work with us to spread the truth they will have learned the hard way: Tanning beds kill.

Not practicing safe sun, kills. Not understanding what little is known about the genetics of melanoma, kills. Not understanding that melanoma is an equal opportunity cancer that doesn't discriminate, kills.

We've got our work cut out for us and we're up to the challenge. We see opportunity and we hear it knocking. God seems to have decided we're up to this and because we know He is even when we have weak, discouraging moments, we are accepting this task with an "in it to win it attitude."

Failure simply is not an option. And since God has sounded forth this battle call, "failure" isn't in the cards.

As we say "good-bye" to Melanoma Awareness Month 2012, we say "hello" to Melanoma Awareness Day, all day every day.

Hello MAD. Yep, that's us. MAD. Melanoma, you and your minions are coming down.

We've been called into battle and our "General" is undefeated. Melanoma, you're coming down. It won't be today or tomorrow, but it will happen.

And I am so dang grateful! Thanks be to God Who gives the victory.

Wednesday, May 30, 2012

What Is "Truth" In Melanoma World?

Remember Jack Nicholson's (Jessup's) testimony on the witness stand in A Few Good Men? Here's the dialogue with thanks to wikiquote:
Kaffee: Colonel Jessup, did you order the Code Red?!
Judge: You don't have to answer that question!
Jessup: I'll answer the question. You want answers?
Kaffee: I think I'm entitled.
Jessup: You want answers?!
Kaffee: I want the truth!
Jessup: You can't handle the truth! Son, we live in a world that has walls, and those walls have to be guarded by men with guns. Who's gonna do it? You? You, Lieutenant Weinberg? I have a greater responsibility than you can possibly fathom! You weep for Santiago and you curse the Marines. You have that luxury. You have the luxury of not knowing what I know: that Santiago's death, while tragic, probably saved lives. And my existence, while grotesque and incomprehensible to you, saves lives! You don't want the truth, because deep down in places you don't talk about at parties, you want me on that wall! You need me on that wall! We use words like "honor", "code", "loyalty". We use these words as the backbone of a life spent defending something. You use them as a punchline! I have neither the time nor the inclination to explain myself to a man who rises and sleeps under the blanket of the very freedom that I provide, and then questions the manner in which I provide it! I would rather you just said "Thank you," and went on your way. Otherwise, I suggest you pick up a weapon, and stand a post. Either way, I don't give a damn what you think you are entitled to!
That speech resonates with me and brings tears to my eyes just reading it. There are those of us who are on the wall in the world of melanoma. It's not just "honor" and "loyalty" to our fellow warriors that moves us, we don't just follow our own inherent "code," we are driven by truth.

There are hardcore truths in our world. Truth isn't always pleasant to hear. But those of us on the wall have to speak it. The world and our fellow warriors need us on that wall and we are needed because we know we'll save lives. Maybe our own. Maybe not. Maybe yours. Maybe not yours. THAT will depend on if you can handle the truth.

And so it is that we have to ask ourselves if we can handle it. A major truth we need to face in the world of melanoma is there is no cure. Not right now. Prayerfully there will be one day. An actual cure. Right now, there isn't one and an actual cure doesn't appear to be on the horizon, though research can have a startling breakthrough at any time. But research is providing new treatments that are extremely promising and working wonders for many of us.

No cure. That's a mighty hard truth to face. But I would rather know the truth about something than a lie any day. I don't have the time, resources, or life to invest in a lie. Who does? To face the truth doesn't mean we have to like it but it does mean we have to live with it and move forward within the boundaries of that particular truth. As someone who is stage 3b melanoma, though currently NED, I must know the truth of how this disease operates and accept the facts of melanoma or I cannot fight against it. Truth becomes a weapon in my arsenal. Lies are weapons used against me.

Lies abound. Lies that sell "cures" for melanoma. I choose not to lift up these sites but a simple Internet search for "melanoma natural cure" and similar searches will reveal sites that tout natural "cures." Not preventative measures but cures.

For the record, proper nutrition is vital in helping prevent cancer and in the survival of cancer. It will not cure melanoma or any other cancer once it has been diagnosed.  The Cancer Project is a reputable source of information on this topic and recommended by Aim at Melanoma. And remember, reputable sites about nutrition and cancer will not promise a cure after the diagnosis.

Lies also abound as to the causes of melanoma causing mass confusion and death. Look for sites that aren't pushing product. Look for sites that are reputable. Any ol' site isn't good enough when looking for information about melanoma prevention, awareness, advocacy, and resources for active disease. And all sites are not created equal! Sites that do not display good language skills, spelling, and grammar aren't good sites for info. Don't confuse glossy and glitzy with factual, either. That sounds like common sense, but when people are desperate for info that sits well with them and gives them a straw to grasp at instead of giving them truth, well, glossy and glitzy can be spellbinding when bound together with lies and misinformation (which is a PC way of saying "lies").  That means read what is actually on the site. Is it true? Does it stack up with what Aim at Melanoma, the Melanoma Research Foundation, and the National Cancer Institute say about melanoma? If not, keep looking.

Or, better yet, stick with the tried and true sites. Personally, these are my favorite, go-to sites for melanoma information:

Aim at Melanoma
Melanoma Research Foundation
Skin Cancer Foundation
National Cancer Institute

Notice that none of these sites sell tanning beds! Any site that sells tanning beds or advocates using them is not a reputable site in the fight against melanoma. Read what the World Health Organization has to say about tanning beds.

I can't write about truth in the world of melanoma without tackling this one last arena. We have got to be very discerning people and look at as big a picture as we can before lifting up sites and information. I'm aware that there are people with melanoma who are fans of Dr. Oz and Dr. Joseph Mercola. I'm aware that their articles and videos about nutrition, exercise, and all kinds of topics are regarded as "gospel" and circulated. I am also aware that they may have information that may be helpful. They haven't attracted the positive attention they've gotten for no reason. I'm aware of that. I'm also very aware that when it comes to melanoma, one borders on dangerous and the other is dangerous.

Dr, Oz has gone on record and has yet to retract it that he has "rethought" his position on tanning beds and they, in his estimation, have a place. Dr. Mercola, a man, who wears the "doctor" label actually sells tanning beds on his website and consistently writes and tweets misinformation about melanoma and its causes. These men fly in the face of research, melanoma specialists, facts, and all things reputable when it comes to melanoma. And they do it with "Dr." as their label and they should know better.

When sharing articles and information by these two, please, please consider that people may stumble on very real misinformation about melanoma and its causes and think they are getting truth when, in fact, they are not.

Can we handle the truth about melanoma? Whether we already have it; or are prime candidates for it; or are human, therefore, it can happen even if we don't belong to a top demographic for it, we have certain facts we must face.

I'm a Methodist preacher. In the Bible, the Book of my faith, in John 18 Jesus is brought before Pilate and they have a well-known conversation which ends like this:
Pilate said, “So you are a king?”
Jesus responded, “You say I am a king. Actually, I was born and came into the world to  testify to the truth. All who love the truth recognize that what I say is true.”
“What is truth?” Pilate asked.

What is truth? For Pilate, Truth was standing right in front of him and he failed to recognize Him.

For us in melanoma world, truth also exists in the form of facts and our own stories. For we testify to the truth we live out each day about melanoma. Truth is right in front of us, too. Do we recognize truth or run from it?
Can we handle the truth?
Those of us on the wall provide truth. We aren't looking for "thanks"... just being listened to.
When and if our voices of truth are listened to and when we make a difference in lives
We are the thankful ones.

Tuesday, May 29, 2012

Let's Work Together And Channel Some Anger And Frustration In Melanoma World

I've learned when I write or post something that actually draws several comments that I'm seeing the very tip of the iceberg, which means there's a lot more people who are angry and frustrated with what we see and live with in Melanoma World. There seem to be, from what I'm seeing, two main sources, and those are the Tanning Industry and the Medical Establishment. While Insurance is another source of woes, that isn't in the top two.

There's a huge pool of anger and frustration at the Tanning Industry and the lies they sell. People think they are buying health and vitamin D and many buy skin cancer, melanoma, and often death. Many are young adults with young children and they're angry they may not see them grow up because they believed and bought lies. These angry, frustrated people in Melanoma World want to bring the whole Tanning Industry down.

There's another huge pool of anger and frustration at the Medical Establishment. Doctors, of all kinds, who are not informed at all about melanoma. These particular doctors seem quite willing to play Russian Roulette with their patients' lives. They refuse to remove and biopsy troubling spots which later, SURPRISE!, turn out to be melanoma that has often spread. They refuse to order scans. If they are not melanoma specialists, they keep their mouths shut about their patients being referred to melanoma specialist oncologists and surgical oncologists and often don't know what the heck they're doing when it comes to treatment. There is also anger and frustration at our places of treatment when they ignore Melanoma Awareness Month and pay attention to other cancers and we are off their radar. These angry, frustrated people in Melanoma World want doctors, of all kinds, informed. They want them to set aside their own pride and act in their patients' best interests. And they want melanoma to be acknowledged and not ignored in favor of the "better publicized and funded" cancers.

Well, in two recent posts I provoked anger and frustration against the Tanning Industry and against the Medical Establishment, but it was anger and frustration that was already there.  And I know I'm just seeing the tip of the iceberg when I read the comments left at each.  It's neither right nor fair to stir up intense emotions and call people to action without providing possible courses of action they can take. We need to be able to channel that anger and frustration.

For those who are angry and frustrated with the Tanning Industry, I suggest getting in touch with Aim At Melanoma.  They are leading the way in the USA in legislation against the Tanning Industry and can also help you get involved in other countries if you're not in the USA. If getting involved with legislation isn't your cup of tea, think about sharing your story and the dangers of tanning beds, using facts and your pictures, at local schools and various youth groups. Write articles for local newspapers or letters to the editor. Write a blog. Look into your heart. When you think about getting involved in the fight against the Tanning Industry, what's your first thought before you start to tell yourself all the reasons why you cannot do this? That may be where you need to focus your anger and frustration. There is more to fighting the Tanning Industry than legislation, especially since legislation isn't tackling the commercial aspect that sells to private homes. Currently, legislation is only focusing on businesses like tanning salons and mainly on denying access to minors at these businesses.

For those angry and frustrated with the Medical Establishment, I suggest contacting Melanoma Research Foundation. Part of their advocacy program is offering, "educational programs for patients and physicians about the prevention, diagnosis and treatment of melanoma and maintains an active presence at professional conferences, such as the American Society of Clinical Oncology (ASCO) and the American Association of Dermatology (AAD) annual meetings." Find out what you can do to help with those efforts. Bounce your own ideas off them. Look at what frustrates and angers you the most. What can YOU do, where you are, to help doctors and other people get the information, resources, etc, they need?

For all who live with melanoma, look at your anger, frustration, and even your fears and focus them in positive ways that will make a difference. Just like the comments I've gotten are the tip of the iceberg, so too, these suggestions are the tip of another iceberg. Maybe these ideas will help. Scour the pages at Aim At Melanoma and at Melanoma Research Foundation for other advocacy information and contact information. If there are other organizations you'd like to work with, contact them. Contact the medical facility you receive treatment at, they may welcome a volunteer. Take the first step and they will work with you. You know they are there...they don't know YOU are there, wanting to help, and they don't know what your areas of interests are.

A word to the people at Aim At Melanoma and the Melanoma Research Foundation and the other melanoma specific organizations: there is a lot of anger and frustration in our community. There are a lot of people who want to make a difference but don't know how. Please consider how you might be able to step up your efforts to reach as many as possible. The people are there! People want walks and events in their areas but don't know how to go about organizing them. They want to know when events of all kinds that relate to melanoma will be held and where. One thing we are finding is that our doctors and facilities are not getting information out to us about seminars, etc. Do they know of these events themselves? Are there ways you can get the info into the hands of those of us who'll likely attend? Not every patient is online. Not every patient that's online is on Facebook. Please look at how you currently get event info out and who you get it out to and see if there are ways to reach more of us and reach us more effectively...and reach our doctors as well. Thank you!

We're all in this together! Those of us with melanoma, our families, organizations, the medical community. We need to figure out better ways to work together. We're ALL on the same team!

What ignites your passion and fire in our common fight against melanoma? We all have a place at the table. Pull up a chair. It takes every single one of us.

Hopefully this has gotten some wheels turning and brains thinking and dreams kicking into gear.

If so, then I am grateful!

Monday, May 28, 2012

If I Ruled Melanoma World

The first thing I'd do is make using the "c" word, cure, illegal to throw around carelessly and in an uninformed way. Especially for the medical establishment who ought to know better. The only time cure could be used in connection with melanoma is to say something like, "I'm working toward a cure". "I'm praying for a cure". "Support melanoma research for a cure." Until the actual Cure Day comes, to tell someone they are "cured" or "basically cured" of melanoma would be worthy of oh, I don't know, maybe a revocation of one's medical license. Really, how can a person be basically cured of anything? Much less something that currently has no cure?

Because of that, the second thing I would make a hard and fast rule is that anybody, once they are staged, at any stage along the spectrum, would get the scan(s) they need. Currently people with stages 1 and 2 melanoma aren't scanned. No MRIs, CTs, PETs, or PET/CTs. It can happen, but it's rare and usually deemed "unnecessary". It's a dangerous and deadly practice though and if insurance companies were half as smart as they think they are, they'd INSIST on those scans. It would prove highly cost-effective in the long run as melanoma is extremely expensive to treat the later the stages get to. To give someone a stage 1 or 2 diagnosis and NOT scan is totally irresponsible. Melanoma plays on our nerves and stress levels as it is and that's WITH scans. I cannot imagine being sent home knowing there may be a loose cell somewhere, knowing you can be stage 1 today and stage 4 in a matter of months (it happens), and know you're NOT being monitored and scanned...especially if you want it. Not all stage one and two patients may want regular scans, but they are still needed at least every year or two. Certainly people who are stage 3 should get annual scans. But again, even that varies from patient to patient, doctor to doctor, facility to facility, and depending on who is paying the bill. At the very least, scans should be offered and the patient can choose whether or not to have them. But the decision shouldn't be made by anyone other than the patient!

And, because that diagnosis, no matter what our stage, plays on our nerves and stress levels, I would also decree that all offices or facilities have a resource person or department and AS SOON AS that diagnosis is pronounced, the doctor's office would send the patient immediately to this resource person or department where they are plugged into a melanoma support system. Generally doctors' offices don't keep up with what's "out there" as far as support. And, to be fair, they probably have enough to do that that would be asking too much. That's why there needs to be a person, or department, who resources that kind of information. No one should go through melanoma, or any cancer, without the support of others who are going through the same thing. Our families, also, need support systems. They exist but we need help finding them.

We need more help than finding support systems. And because of that I'd decree more viable financial help options. Cancer isn't a cheap thing to live with or fight, and melanoma is among the most expensive. Insurance companies don't like to see this diagnosis. People who don't have insurance at the time of diagnosis probably aren't going to be able to get any with this as a pre-existing condition. Not everyone is able to self-pay. People without insurance and ability to pay don't always get the best of care. That varies from office to office and from facility to facility but it happens.(Note: this in red was written February 15, 2014 and health insurance is now the law in the USA and can't be denied for pre-existing conditions).

I'd decree that all doctors who are NOT melanoma specialists swallow their pride and refer people with melanoma to oncologist and surgical oncologist specialists. Get them into facilities that have melanoma specialists. Don't think melanoma is like other cancers and if you can treat breast cancer then you're qualified for melanoma. You're not. We need specialists and often new patients don't know that. I would rule that ALL doctors, of any kind, know the nearest melanoma specialists to them and that they refer all melanoma patients.

I'd also decree that all doctors learn about melanoma because this is the fastest growing cancer there is and people are joining our ranks far too fast. Learn what it looks like and learn that it can also look like "nothing." Learn to listen to your patient and if they want something removed...remove it. That shouldn't be that hard to do, but apparently it must be brutally difficult for some doctors to do their job. I hear from far too many people that they literally beg their doctors to remove something and the doctor would rather watch it and so they all watch it and it's melanoma and by then it's at a more advanced stage. Doctor: this is not and will not be YOUR melanoma or possibly YOUR death. Remove the blasted place. I, hereby, decree that!

OK, I got carried away. I really can't decree anything. But if I ruled Melanoma World that's what I'd do.

But I also wouldn't lay everything at the feet of the medical establishment and absolve us from responsibility.

I'd decree that those with melanoma, any stage, get involved in finding that cure, fund research, do the walks, spread awareness, tell your stories.

I'd also decree that we stop calling melanoma "skin cancer." It is far more than that and it creates a false sense of security and a huge misunderstanding of what melanoma really is.  It's melanoma. Melanoma cancer, even. But it's not melanoma skin cancer and it's not malignant melanoma. As a friend correctly points out, there's no such thing as non-malignant melanoma. Melanoma is cancer and because it is cancer it is malignant. Malignant melanoma is very redundant.

For those who don't have melanoma I'd decree that you pay attention to us and listen and not politely either, but proactively. A lot, not all but a lot, of melanoma can actually be PREVENTED!

Those melanomas that can be prevented are lives that can be changed and maybe deaths that won't happen because of this disease.

I don't want to rule the whole world, just the melanoma part of it. This is what I'd do if I had that kind of power. Since I don't, I'll dream the dream, advocate, and do what I can to push for change.

And I'll pray. Every day I pray for that elusive cure. Every day I pray for those that need that cure yesterday, today, and will need it tomorrow. I love you guys!

And I am grateful that God hears our prayers and one day, one day, I'll be grateful for that cure.

Saturday, May 26, 2012

"The Impossible Is God's Opportunity To Show Off!"

Can I get an "AMEN!!!" to that?!

And we so desperately need to not only be reminded of that but to see it in action! YES!

This has really been a rough season in the Facebook melanoma community. We've been hit hard and slammed up against time after time. Rough patches need a spell of respite and we've gotten one that has been tremendous and then today I find a song that has several great lines but the best one, by far, to me, is "The impossible is God's opportunity to show off!"

And what a Divine Ham God is! At just the right time He speaks into our pain and another impending moment of dread and He stops the clock and says, "Uh-uh. Not now."

The "not now" is Steve Hock's moment of crossing the finish line. Steve has been adopted by many, loved by more, and prayer-supported by our community in a way that I haven't witnessed before. But to Steve's credit he has been very open, honest, and forth coming about his fight and his life. He has taken the pictures and generously said, "Share and tell." He has put his face on the pain and uncertainty. And he has been gently, yet strongly, tough in letting us all know his battle is drawing to a close.

He's a young man, early 30s, engaged, two young children...a son and a daughter. Yesterday, as I write, he underwent a grueling brain surgery to remove melanoma and it was his last chance at life. And he knows that despite the surgery, melanoma is closing in because he has the tumors everywhere, but removing them from his brain bought him more time. If he survived the surgery. Which he did.

He was told he that if he survived the surgery he may lose his speech. He didn't. He was talking immediately after surgery.

He was told that if he survived the surgery he may be in a vegetative state. He wasn't. He was able to obey his doctor's commands immediately after surgery.

He wanted to live to see his baby girl turn 2 today Saturday May 24th. He has accomplished that and so much more.

Even when Steve draws his last breath he will leave behind a legacy that will reach far beyond anything he could have fathomed before melanoma entered his life. God has taken this disease, blessed it and broken its bonds in this one man's life and in doing so has put a face on what it looks like when God takes the impossible and uses it as an opportunity to show off.

God has shown off and is still showing off big time in Steve Hock.

As I write, Steve is not only breathing, he's still in the fight. He has shown us all what the fight looks like, whether we have melanoma or not. He has shown us how big a deal life is and how precious a gift love is and family is worth fighting to live for. He has rallied people with faith and people without faith and taught us all.

Or should I say God has taken an opportunity to raise up the least among us, someone the rest of us didn't know existed until melanoma became part of his life and he became part of ours', someone who lived his life and was off the radar for most of us. Myself included.

But he wasn't off God's radar! And that, perhaps, is one of the greatest things Steve has borne witness to and that will, also perhaps, be his greatest legacy. None of us, no matter what our past, no matter what our present, are off God's radar.

And as for our future, well, God has the final say in when our final moment comes. Not melanoma. Not medicine. Not the world of research or technology. God.

And because God has the final say, He can take what the doctor says is our final moment and tell that doctor, "Think again. This is MY time to show off. I'm God and I can do that. Take a seat and watch."

And because we witness God showing off in Steve Hock's life, we know God can and does show off in our lives, too. We get filled with hope and those who also fight as hard as he does are reinvigorated to keep up the fight until God says, "Stop."

God bless us all and may we be in tune to those seasons in our lives when all seems hopeless and God speaks into our doom and gloom and says

THIS is MY opportunity to show off.

Thanks be to God.

Note: The day of this addition is Saturday June 2, 2012 and God is STILL showing off in Steve Hock's life! Yesterday they were getting him up, out of the wheelchair, and trying to use his legs.

Another Note, dated Friday June 22, 2012. Steve Hock battles on though the pain is horrendous now.  This is the link to his photo album on Facebook of he melanoma battle. Be sure and click on each picture as most have captions.

Last Note: Steve Hock died July 16, 2012. 

Thursday, May 24, 2012

Game On! Tanning Industry: You Don't Know Who You're Messing With!

Apparently this little blog has caught the attention of the Tanning Industry and I'm on their radar! I don't know why or how, but God has smiled and I'm following this rainbow all the way to the pot of gold that surely waits at the end! And just so the tanning industry makes no mistake and decides to twist my words, no, I'm not talking about any money making scheme. It is a metaphorical pot of gold.

I admit my naivete; I didn't catch this at first. But Hotel Melanoma's proprietor explained things and he has already blogged about this wonderful phenomenon we're both experiencing.  He, however, has only caught the attention of one. I've caught the attention of three! THREE! Can I say "excited" enough?

No. Let me tell you why. These people, not only "my" three, but the Tanning Industry don't know who they're messing with. I don't need attirude for this one. They might, however, before this is over.

What these people fail to realize is they don't just have me and my pitiful little blog on their radar. Oh no. They have the melanoma community on their radar. AND, newsflash in case they've somehow missed it: THEY ARE ON OURS!

They've got damn angry mamas on their radar. Not good for them in the Industry. Mamas who accompany their children to oncologist appointments. Teenagers, twenty-somethings, thirty-somethings going through hell and back to live. Why? Because they bought the tanning industry's lies. Angry, grieving mamas who have buried their children who tanned. TI, they're going to bury you just like you buried their children. I promise you that.

Tanning Industry: you're messing with all these mamas, and the daddies, too, when I get on your radar. See, we in the melanoma community, we reside at Hotel Melanoma and we're a tight community. You get one or two of us on your radar, and you've got us all.

You know who else you've now got on your radar and who have YOU on THEIRS? People who've been one of you but now have melanoma. They bought into your lies and owned their own tanning salons and home beds. They went into those coffins and lived to tell about it and tell what they really do. Others here in Hotel Melanoma didn't actually own the beds, but paid to use it thinking you were being honest with them. They're on your radar. And I hope you're scared because you're on theirs. And they are angry. They've got lives they want to lead...not lead them fighting melanoma. They've got small children they want to raise...they didn't plan spending their childhood fighting to live to raise them into adults. You took their money and sold them lies. You sold them melanoma. You sold some death.

Tanning Industry, I'm not the Chaplain Boss Queen of Hotel Melanoma for nothing. I don't know these people for the sheer fun of it. We aren't the neighborhood bridge club and we don't mess around or play games. Apparently, though, you do. Sneaking around, twisting words, trying to make it seem like you've got a friend...give me a break. But you play your games. That's OK. I'll tell you, up front, we don't play games here. Who has time? We'll be up front and honest with you. You'll find us on the high road.

There's a lot you don't know about me. But God does and He knows who He has called into this battle with you. I don't know if you see l'il ol' me as David and you as Goliath, OR, if you see the melanoma community as David and you as Goliath. It doesn't make any difference. And I'll tell you why: I know how the story ends. And in case you need to refresh your memory this link goes straight to it and you can even read it from different translations.

I know how this kind of story always ends.

You're going down.  It may not be today. It may not be tomorrow. But you're going down.

And for the record, The Motions has been my prayer, motto, and theme song since it first came out a few years ago. You may want to remember that. You don't know who you're messing with. Because it's not just me. But I do make the people in the tanning industry a promise: I'll be here for you just like I am here for those who used to be one of you and are now one of us. They are loved and supported. And you will be too as you and your family members get melanoma. I don't hate you. I hate what you stand for and sell. But I actually feel sorry for you. You've bought a lie and because of that you happily sell that lie and sell death and misery. It will catch up with you and when it does, I'll be your Chaplain Boss Queen, too.

In the meantime, Tanning Industry, you're going down.

And I stand grateful to be a part of it.

Bring it on!

Wednesday, May 23, 2012

Not All Melanoma Comes From The Sun Or Tanning: Know The Facts

Currently UV rays (A and B), sunburns, sunscreen, suntanning, tanning beds, and anti-tanning bed legislation are all buzzwords in the world of melanoma. And rightfully so. But they can be misleading also because not all cases of melanoma are intricately linked to any of that. Thirty-five percent to be exact.

People can read what we say and watch the videos and walk away with a very false sense of security and think they're "safe" from melanoma. "I never lay out in the sun." "I always wear strong sunblock and use it correctly." "I've never been to a tanning bed." "I'm not fair skinned or even Caucasian." "I don't fit in any of the demographics I see portrayed." "Therefore, it can't happen to me."

Oh yes it can. Please pay attention as I pull out my calculator so we can do some math.

First, let me say when I pull facts and figures, I don't make them up or just take them from any ol' place. I go to trusted sources and I share those sources. So, from the Melanoma Research Foundation:

"The statistics around melanoma are astounding:
One-in-50 Americans has a lifetime risk of developing melanoma.
 In 2009 nearly 63,000 were diagnosed with melanoma in the United States, resulting in approximately 8,650 deaths.
The projected numbers (according to the National Cancer Institute) for 2012 are even higher with  76,250 diagnosis and 9,180 deaths."   

Keep those figures in mind as we look at the causes of melanoma. Again from Melanoma Research Foundation:

"The greatest contributor (approximately 65 percent) to melanoma is exposure to ultraviolet (UV) rays from natural or artificial sources, such as sunlight and indoor tanning beds. It is likely that a combination of family history, genetics and environmental factors are to blame. However, since melanoma can occur in all melanocytes throughout the body, even those that are never exposed to the sun, UV light cannot be solely responsible for a diagnosis."

That means 35% of melanoma cases are NOT attributed to the sun or to tanning beds. Thirty-five percent! Thirty-five percent of 76, 250 is 26,687.5 and since there's no such thing as half a person, let's round that up. 26,688 people will be diagnosed this year and they will not be able to point to UV rays of any kind. That's just this year's projection.

Please read about other risk factors at the Melanoma Research Foundation.

The National Cancer Institute has this to say:
"When you're told that you have skin cancer, it's natural to wonder what may have caused the disease. The main risk factor for skin cancer is exposure to sunlight (UV radiation), but there are also other risk factors. A risk factor is something that may increase the chance of getting a disease.
People with certain risk factors are more likely than others to develop skin cancer. Some risk factors vary for the different types of skin cancer."

While Aim At Melanoma backs up what these other organizations say, they provide a wonderful chart "Top 17 Risk Factors For Melanoma."

Aim also has a page devoted to people who are not Caucasian so they can learn their risks for this disease. This page begins:
"Darker-skinned races produce more melanin, the pigment that gives color to skin and hair and protects the skin against damage from ultraviolet radiation.
Most skin cancer warnings are directed towards fair skinned individuals with blue eyes and blond or red hair who sunburn easily, as these individuals are at greatest risk. Given this fact, one may mistakenly assume that people with darker skin types such as Hispanics, Asians and African-Americans do not need to worry about melanoma.
This is not true. Increased pigmentation does protect individuals from UV - induced melanomas, but there is a type of melanoma called acral lentiginous melanoma (ALM) that occurs even without UV exposure.
This type of melanoma, which also occurs, though less frequently, in the Caucasian population, is sometimes ignored or mistaken for an injury or a nail fungus. Because this particular form of melanoma is often misdiagnosed or ignored, it is often more deeply invasive when it is finally discovered."

And finally, the Skin Cancer Foundation has this page on causes and risk factors.

Let's not forget the children who are diagnosed with melanoma. The reasons young children get it still are not understood, but approximately 500 children, in the USA alone, are diagnosed each year. And like all melanoma cases, pediatric melanoma diagnoses are on the rise. MD Anderson has a most informative section on this topic but please note, "Among children, sun exposure plays less of a role in the development of melanoma. Researchers believe it is a combination of genetic predisposition and other unknown triggers." (emphasis mine).

While we are correct to sound alarms and warn people about the dangers of the sun and tanning beds, we must be careful and informed and not give the impression that all melanomas come from exposure to those sources. That's dangerous and misleading.

There are other factors. We must teach about the whole scope of melanoma and not just the part we are more familiar with.

People's lives depend on that. On us. Learn the facts of melanoma. And when presenting about melanoma don't just pull the UV card and push sunscreen and advocate for staying out of tanning beds. There are literally thousands of people that doesn't apply to and they are getting melanoma too and more will follow.

Information is available. Use it. Learn it. Teach it.

Make people grateful!                                                   

Tuesday, May 22, 2012

Advice To Tanning Bed Tanners

I had an interesting opportunity yesterday as I write. Someone who works for a commercial tanning business left a short, but nice comment after a post. I took the opportunity to share with her something I've been noticing and I gave her some advice. After rereading my response, I want to share that with you:

"Absolutely, the sun can be terrible! I can remember three "good" sunburns in my teen years and was told by my melanoma specialist oncologist's PA that one was all it took. But you and I both know that tanning beds are terrible and I've never even seen one up close and personal.

Friend, you have no idea how much I appreciate you reading this and responding! I truly do. I greatly appreciate that you say they are "damaging." You are the first person associated with tanning beds, in any way, that I've seen admit to that.

Can I tell you about something I have seen, time and time again? I write and admin Melanoma Prayer Center on Facebook and am part of several melanoma support groups. Something horrifying that I'm seeing far too frequently, is young women (sometimes men) in their teens and twenties getting melanoma and they were tanners (in beds). How often they went really doesn't seem to factor in, hate to tell you that, but it doesn't. Melanoma like they get moves quickly and it's the deadliest cancer I've ever seen. It's scary! They can be diagnosed at stage one or two and be dead within a year.

I have a gut feeling that one day researchers are going to take notice and find there are two strands of melanoma and that the one that develops from tanning beds is infinitely more nasty, aggressive, and harder to combat than the kind that stems from the sun or genetics. I'm seeing it, Friend. I wish I wasn't, but I am.

If you work at a tanning bed company, chances are really good that you're a tanner. PLEASE get a full-body skin check immediately from a dermatologist at a hospital that has melanoma specialists because that way you're more than likely to get a derm that is better trained at dealing with potential melanomas and other skin cancers. I'd tell you to please stop the tanning before it's too late, but it may be already. Hope not, but you'll never know until you're diagnosed.

But please get that full-body and do that twice a year. Please implement a policy, if you haven't already, not to allow teens to tan no matter what their mamas or state law say. Please remember that you said, they're damaging. Deadly is definitely damaging.

And, please, after you've gotten that skin check, let me know how it goes. I'll be praying all is well with you."

That's what I told her and I meant every word. People who work at tanning salons or who sell tanning beds aren't mean, horrible people. Many are just trying to make a living and they're making that living by doing something they believe in and enjoy. They've bought the hype just like the people I meet with melanoma that stems from tanning in beds bought the hype and the lie bit them.

People who get their tan, for whatever reason(s), from tanning beds aren't stupid people just looking and begging for melanoma. I've met many on Facebook and while we've got a melanoma connection, I got mine from the sun and they got theirs from tanning beds, they went tanning for many reasons but to try and get melanoma wasn't one of them!

But we've got that blasted melanoma connection, and honestly, from what I'm seeing over and over and over...the tie that binds looks one way in my hand and nastier in theirs.

A big, huge caveat here: I am not a researcher and I don't play one on TV. There is no scientific community backing up what I'm seeing...right now. I hope that changes. If I'm seeing it, surely other people in the established medical and melanoma research communities are seeing it. AND, our stories are different. What I'm seeing over and over doesn't hold true for everybody! But it's holding true for enough that I believe with all my heart it needs to be out there where people who tan in tanning beds can make wise choices about whether to continue and that they understand they really need to stay super-uber-vigilant about every inch of their bodies. And get it checked at least twice a year by a professional.

So please, whatever your age, if you use tanning beds at all: One, please stop. The damage may already have been done. You may well have melanoma or basal cell or squamous cell skin cancer waiting to jump out and bite you. If it's melanoma, it will bite hard when it bites. Highly possible that it will bite quite hard and aggressively. It will not care if you are a teenager or in your twenties. It will not care if you have babies at home. Look at your life, your hopes and dreams, and your family and tell me that tan is worth being whisked away from all that and all of them.

And please, please, get that full body (and I do mean full body) skin check twice a year by a melanoma specialist dermatologist. Not all dermatologists specialize in melanoma. All have been trained to some degree as part of their education, but not all specialize in it. There's a huge difference! Find a hospital that has melanoma specialist oncologists and surgeons on staff and then make an appointment with their dermatology department. Or, contact the American Academy of Dermatology and get help finding the right dermatologist for you. They aren't all in hospitals.

Melanoma is a mean, vicious, deadly cancer that means deadly business no matter how you get it. There is no cure right now and treatment options are limited. I got my sunburns as a teenager and wasn't diagnosed with melanoma until I was 48. For those of us who get that diagnosis in our 40s, 50s, 60s, and even older that seems to be something of the norm. Burn as a teen and get melanoma decades later. And then we can have a good long stretch of being NED (no evidence of disease). When and if it does come back, it does seem to be coming back aggressively but it doesn't seem to work as fast as those with melanoma that stems from tanning bed usage. We still live with the specter of its return, we all have stats, we all know the score. That said, it doesn't seem to act the same way in us as it does with people who frequent tanning beds (with or without also sunning).

So, I'm not a doctor. I'm not a melanoma researcher. I'm not someone who can speak with final and absolute authority about what I've written about how dangerous tanning bed melanoma is, but I am someone who is out there and exposed to stories. I am someone who sees what she sees and thinks it's worth mentioning and warning about. I am someone who knows the importance of full body skin checks. And I am someone who cares.

Just maybe, maybe, if you're a tanner you'll take heed of something here and act on it. Stop that tanning, or at least keep a highly vigilant check on every inch of your body and get anything and everything that's suspicious checked out.

I don't want to meet you on Melanoma Road, but I'm here for you if I do.

I'd much rather you make me grateful that you read and paid attention to this post.

Monday, May 21, 2012

Melanoma Road Ventures Thru Facebook

Traveling Melanoma Road isn't easy. It knows blessing because it brings a person in contact with wonderful people, but it's a perilous road, to be sure. There's no cure for melanoma and treatment options are limited and no guarantee. Some people with some other cancers may be lucky enough to hear "you're cured." But none of us will ever hear those words, no matter what our stage at diagnosis. Maybe one day but not today. Or tomorrow.

Thanks to Facebook we're able to come together and form communities, many communities, and they are tight. We share, learn each others' story, share each others' hopes and dreams...and fears, pray for each other, lend support, encourage each other to keep fighting and pushing and hoping and to keep the faith, even help each other out financially from time to time. We private message and we also make phone calls and visits. We learn of each others' treatment options and what is ultimately chosen. We keep up-to-date with one another's progress or lack of progress. We watch helplessly when battles take a downward spiral and that digression often moves extremely fast once it starts.

We take it personally and internalize these final battles. We cry out against them and urge the one with no fight left to keep fighting because we know that one day that may well be us and we can't bear the thought. We can't bear the thought of melanoma snuffing out yet another life and we can lose sight of God in the process. We forget there's a big picture that we cannot see and that no life is ever in vain even if it doesn't last as long as we think it should. Particularly if it's our life or our child's life or our spouse's life or our parent's life or our sibling's life or the life of a Facebook friend whose battle mirrors our own a little too close for comfort.

And so it is that that's a place we find ourselves all too often these days. Our communities are growing quickly; we bond tightly just as fast as we take on each others' stories as if they are our own because they are.

We can log on and in one fell swoop learn that one warrior has died and another is saying good-bye and another has received the worst-of-the-worst of bad news and will soon start that final journey. We cry as we read of mothers we respect and love crying over their keyboard as they share the pain of burying the child they brought into the world and now must visit that beloved child at the cemetery. We hold our breath as spouses must continue on in a new life that still looks the same in so many ways and we know that our own spouses may also have to live those new lives one day soon and make adjustments we don't want them to make but we won't be there to stop it or help them. We can't take the pain away for them. We see ourselves in the stories of those who have melanoma and we see our stories in the stories of the families left behind because we get a glimpse of the world our own families will possibly live in one day. For those who battle and also have young children, it's particularly heartbreaking.

And melanoma sucks and we can't stop that either or turn back the clock and make decisions that may have stopped this progression in our lives. We can't go back and not sun, not tan, remove that blasted mole, take the family history seriously, not wait so long to see what a suspicious place was going to do, understand that many melanomas have no explanations so vigilance is demanded at all times no matter what a person's skin color or ethnicity or age or gender. We can't go back and make our doctor listen to us and remove something we didn't like the looks of.

Melanoma Road is a hard place to live on. It can be overwhelming but it's the life we know. We can step back but we can't step off. We can take a deep breath but it's in the air we breathe. We can get off Facebook but then we can go back to traveling this road alone. The road isn't going anywhere. Facebook communities, when they are bound together by something like melanoma, are places where, all of a sudden, we meet our fellow travelers and that's a great and giddy feeling. We're with people who understand. They get it because they've got it. We may never "meet" each other but we know each other well and we love each other. But these communities are also very intimate places and we share each others' pain and grief.

When we traveled alone there were drawbacks but we weren't overwhelmed. We knew the numbers and knew there were other people "out there" like us, but we usually were spread so far apart that we never met and we never swapped stories or hearts. Facebook changes that scenario. As our communities grow and stages advance and lives come to an end, we find these things happening more and more. We can know weeks where we say good-bye to several friends. And each time, we say good-bye to ourselves in a way. We lose a little more of our if we had any left to lose. And life goes on. But we remember and we honor those we say "good-bye" to by saying "hello" to a new warrior. Just like we never get used to the empty seat at the table, we are forever pulling up another chair. The cycle continues and we never know how our journeys will progress or end.

But we know we must live our lives to the fullest. Eventually we must face the fact that our piece of the picture is a piece of the picture and not the whole painting. We build on those who were before us and those after us will build on what we have done. While we share the same time frame, we build together. We aren't entities solely unto ourselves.

And we aren't the Painter either. We don't mix the colors and we don't make the frame. And I look at my little piece of the painting and I get to see how it has evolved to this point, because it is a living picture that is also a puzzle, but I don't get to see where it is going. I get to see some of the pieces around me but I don't get to see them all. I can see as far as my eyes can see but I cannot see the next minute of the painting. And that is as it should be.

All I know is that I need to trust the Painter to pull it all together into a glorious painting that's always changing but always in His Hands. I need to know that while I occupy a small piece of the painting, it's an important piece and it's a piece that only has my name on it. I need to know that once the Painter paints my name that I'm in the painting. Permanently. When my part of the picture is complete, part of me may go away but part of me is an intricate part of the painting and puzzle I leave behind.

It's like that for all of us. Once we're in the painting, we're there. That doesn't mean the painting isn't wet with tears, for it is. I think those tears are what God stirs the paint with. It's not easy being in God's painting. It's not easy living on Melanoma Road.

But while there is pain, there is blessing. Even on Facebook.

And I am grateful.

Thursday, May 17, 2012

There's A Hole In My Bucket List

When I was ten I spent two weeks at Camp Rainbow in Boone, NC. Among other things, I learned some amazing camp songs; some would say "cheesy and campy," but I still remember some to this day. One particular favorite was There's A Hole In My Bucket. It goes back and forth between Henry and Liza and it ultimately ends where it began, "There's a hole in my bucket, dear Liza, dear Liza. There's a hole in my bucket, dear Liza, a hole."

So it is that there's a hole in my bucket...list. I'd never heard of a "bucket list" before hanging around the folks at Hotel Melanoma. I had things I wanted to do before I died, but that's what I called that short list, "Things I want to do before I die." I wanted to go to Hershey, Pennsylvania and I wanted to see a play on Broadway in New York City.

Check and check and I had fulfilled all my wildest dreams. With a lot of life left to live. Sigh. What's a gal to do? Well, this gal gets all contemplative and does some reevaluation of that list and finds something pretty theologically significant. For me anyways.

But first, let me say I have a red car. Some days it's my mid-life crisis car and some days it's my Pentecostal/Methodist car. But she's a bright red HHR and I'm 20 again behind her wheel. Getting a bright red car was added to my bucket list when I knew what a bucket list was. And, again, check.

As I ramble the halls of Hotel Melanoma and put on my Chaplain Boss Queen gear, I hear hopes and dreams. I hear those "want tos." That list of "stuff to do while I'm here to do it" and I think back over my own list and I look at where I am now and I look at my car and I fondly remember my two must-do trips and I peer into my bucket and that's when I see that blasted hole.

My car is a thing and my two trips didn't change me or my world. When I am gone my car will not care and NYC forgot about me long ago. Hershey PA doesn't remember when I was there. I am nowhere on the radar of either city. The fact that they were on my list of things to do didn't alter their course in this world and the fact that I completed my list by visiting them didn't make the world a better place.

And I look into my bucket and I realize something I wish I had realized long ago. It's not the things we do or have that are important. It's the people we touch. And that touch us.

When I finally do leave this world, people will not look to my vehicle to see the person I was. Heaven help us all if that's the case! No, they'll look to my children. They will be the ones I continue on in. They will see me reflected in my husband and in my church. They will know I existed and lived when they read something I wrote and it touched them in such a way that it made a difference in their life. I will live on when people exchange stories about me.

My bucket list becomes to be about people and not things, trips, or dare-devil activities. Not that there's anything wrong with going sky-diving if that's a dream. But I promise you, no one will be remembered because they jumped out of a plane...oh, it may become part of a nice story, but it will pass. Eventually people will focus in on who you were and why you were that person and how you touched their life and how they can carry you with them. And that will boil down to heart and soul. How did you live, love, fight? How did you make the most of your unique gifts, talents, and graces? How did you go through open doors and how did you close some you didn't want to go through? How did you get past failures and regrets? What role did God, faith, hope, play in your life? Who called the shots? God? You? Both? Fear? Hope?

We all have a birth date and we will all have a date of death. As the popular question goes, how will you live the "dash"? The time between the two dates?

What does your bucket list look like? If it looks like "things" and inanimate activities and places, may I suggest cutting a hole in that bucket? People can't be contained in buckets and in the end, when all is said and done, it will be the people in your life that mattered most. Where are they on your bucket list?

In the song, Henry had a hole in his bucket and he couldn't fix it because he couldn't fetch water to wet the stone to sharpen the knife to cut the straw that was too long to mend the bucket because there was a hole in the bucket. It was a vicious circle, indeed. My guess is Henry threw away the bucket.

But he kept Liza.

Throw away the bucket list and keep the people. Make the ones you love your priority. Make using your gifts, talents, and graces to make the world a better place your priority. How do you want to be remembered?

May you find a hole in your bucket list and be grateful!

I know I am.

Wednesday, May 16, 2012

Rocking Out Melanoma November 17th!

OK. This morning started out as one of those "moody blues" days. Not a day full of attirude, but a day that was going to be contemplative. Melapals know what I'm talking about. Then two things happened.

One, I looked on the calendar and was reminded that tomorrow is the 17th which means our Aim at Melanoma Walk in Charlotte, NC is just six months away! Hot dog! That means that six months from today I leave to go down there so I'll be fresh the morning of the 17th as I bring up the rear at the walk. Being a Tarheel, born and bred, I feel it is my bounding duty to help keep the excitement for this event going and stirred up. Anne Bowman, the President of the Charlotte, NC chapter of Aim has plenty on her plate as it is. Though this will be my first trip to Charlotte, this is my state and I want to show it off and be hospitable, even six months in advance. This walk is already a big deal as people, literally, are flying in from all over the country to participate and meet each other. I'm not sure how much walking will get done because there's going to be lots of hugging, crying, and visiting. Will people donate to a Aim at Melanoma Hug-A-Thon you suppose? I bet we can keep raising bucks at our after party.

Two, I found a quote left on my Facebook page by a fellow blogger. He's not referring to me with this quote but to yesterday's post. "A small body of determined spirits fired by an unquenchable faith in their mission can alter the course of history.  Mahatma Gandhi"

And I thought of our walk again. But more than that, I thought of those of us who don't just travel MelaRoad, we live there and have rooms at Hotel Melanoma. We don't just "have melanoma." No, we have a mission to stop this cancer from continuing its chartered course of being the deadliest cancer in just ten years. Other people may not understand our mission but we do. And I think we're beginning to grasp the idea that we can actually change the course this cancer is on.

Some doctors are already calling the rapid spread of melanoma "epidemic." Australia is already dubbed the "Melanoma Capital of the World." And while there is much left to learn about melanoma we know enough to know we definitely do not want our children getting it. Or our grandchildren. Or anybody else. We've got it and we don't want others to get it. We can't change the course we're on, but we want to change the course of this cancer and change the course of history and change the course of other people who stand a chance of getting it.

We want to make our journeys count and count HUGE! And while it seemed quite dubious, at first, that people cared and were listening, well, we're beginning to see evidence that people DO care and they ARE listening and they ARE making changes in their habits and lifestyles and that's exciting! Sure we wish there were more, and there are people who still ignore our stories and that hurts, BUT we are finding that we ARE making a difference and maybe, just maybe, because we ARE making a difference melanoma won't be the deadliest cancer in the world by 2022! And maybe people who were doing everything they could TO get it will make changes in time so they WON'T get it.

Well, my moody blues mood changed. I think about my fighting melapals and I can't stay down long. I think about our upcoming walk and I get pumped all over again. That six months is going to fly so fast and November 17th will be here before we know it! And we're going to rock it out at our after party and we're going to rock melanoma out of the future. We have to.

Melanoma is coming down! We're being seen and heard and we're gonna paint it black.

So I leave you with my version of Meatloaf's Life Is A Lemon And I Want My Money Back

Life’s Not Just Pink So We Will Paint It Black

(We will paint it black!)
(We will paint it black!)

It's all or nothing but next to nothing's all we get
Every time we turn around, we burn it up and burn it out
It's always something, there's always something in our way
That's the only guarantee, that's what this is all about

Mel’s a never-ending attack
Everything's not pink and that's a fact
Life’s not just pink so we will paint it black!

And all the morons, and all the stooges with their coins
They're the ones who make the rules—this isn’t a game it's just our life
There's exasperation, there's exasperation in the air
It leaves a bad taste in our mouth but we will cut thru all the strife

And we're always slipping thru the cracks
But we get over, we push back
Life’s not just pink so we will paint it black!

(We will paint it black!)
(We will paint it black!)

(what about love?—got to have it!)
It always helps us to stay strong
(what about sex?—got to have it!)
It helps remind us we belong

(what about our family?—got to have them!)
All their batteries last long
(what about our friends?—got to have them!)
They’re parts needed in our song

(what about hope?—got to have it!)
It's out there and displayed
(what about faith?—got to have it!)
It's tested but remains

(what about your God?—got to have Him!)
He lifts up the warranty
(what about your town?—got to have it!)
There’s no dead end street for me

(what about research?—got to have it!)
It is where our future lies!
(what about money—got to have it!)
Funds the research or more die

(what about more options?—got to have them!)
Melanoma’s hard to get past
(what about our future?—got to have it!)
We want it now and want it fast!

(We will paint it black!)
(life’s not just pink)
(We will paint it black!)
(life’s not just pink, life’s not just pink)

It's all or nothing but next to nothing's all we get
Every time we turn around we burn it up and burn it out

It's a never ending attack
Everything's not pink and that's a fact
Life’s not just pink so we will paint it black!

And we're always slipping thru the cracks
But we get over, we push back
Life’s not just pink so we will paint it black—black—black—black—black....

(We will paint it black!)
(We will paint it black!)
(life’s not just pink).

There are too many cancer colors. We're going to do everything we can to take black out.

Help us and we'll all be grateful. Support melanoma research.

Tuesday, May 15, 2012

Hanging Out With Mama Bears On MelaRoad

A friend shared about her urgent need to tell others about her melanoma at the end of my blog post Hold Out Your Candle and ended her comment by writing, "Everyone and their dogs knows about breast cancer these days; society is oversaturated with pink this and pink that. I say it's high time we paint it black." (emphasis mine).

And the choir sings, "Hallelujah!" And the rest of us in the pews say, "Amen, sister, preach it!" And the melanoma community jumps up and down and cheers. We've got some rallying cries because this is what many of us are thinking, saying, preaching, and doing. There's a growing grassroots population chanting:

It's high time we paint society black.
We will not only be heard, we will be seen. The faces of melanoma.

Part of this grassroots population are mamas; women determined to make a difference in the fight against melanoma. Women who are driven to make sure their children's faces are seen and their stories are heard so that maybe, just maybe and prayerfully, other mamas won't ever hear the words, "Your child has melanoma." That's not to say that daddies aren't equally passionate about their children, but often, from what I've seen, the daddies are supportive while the mamas are the driving force.

And Mama Bears are a force to be reckoned with. Don't mess with her cubs. This is one Mama Bear's story about her 21 year old daughter's face plastering melanoma awareness billboards in Michigan.

We have a hard time imagining a young 20-something with stage 4 melanoma. We think of it as an older Caucasian man's disease. It sets our minds to swimming to fathom teenage boys getting it. But they do. Their mamas hear those words, "Your teenage son has melanoma." And even as difficult as that is to wrap our minds around, we really think we've landed on another planet when we consider children younger than ten getting it. A child born with it.

Pediatric melanoma is rare and not caused by sun or tanning exposure. But "numbers" and "statistics" don't matter when it's your child. Your four year old daughter.

Grace is the six year old child of another Mama Bear I travel MelaRoad with. She was four when she was diagnosed. Her mother shares her story in this new article. It's packed with Grace, grace, and more grace. It's also packed with helpful tips and facts of what to look for in your own children.

Just like Jillian's Mama Bear could have said, "There's no way my child's face is going up on billboards sharing our pain," Grace's Mama Bear could have refused to share her family's pain inflicted by this cancer.

But that's not how true Mama Bears behave. Mama Bears, because they know the pain, honor the children they are inspired by and demand their pain not be in vein. They refuse to let their children be ignored and their stories not be told. Melanoma has done enough and these Mamas will not let their stories be squelched. They want their children seen and their stories shared. They would give everything they own if melanoma were not part of their child's life and their family's story. But that's not how life has turned out for them.

Mama Bears don't just stick up for their own children, they stick up for other children, too. They know what a lot of other parents do not know about melanoma. About young-adult onset melanoma and about pediatric melanoma and they have a need to get the word out.

We all need to get the word out and be avenues to help them share their stories so their story doesn't become your child's story. We're going to paint society black.  We're coming at you and we mean business. We're deadly serious. We have to be. Melanoma is deadly serious.

Again, six year old Grace's story.

I'm grateful for our Mama Bears who share what many people keep private. There are many others, no way is MelaRoad only inhabited by these two. But these two put a Face On Melanoma the world usually doesn't get to see.

Thursday, May 10, 2012

Practical Help Dealing With Attirude

Attirude: The emotional fragility that accompanies a melanoma diagnosis. Depending on the person, it can move in and take up residence and worsen; or, it can come from out of nowhere and attack in bits and pieces, retreat for a while and come back without warning. It can be shaped and molded to bring out the best in us or it can be left alone and bring out the worst. It creates that "bring it on" and "give it your best shot" and "don't mess with me or mine" attitudes. It precedes our meltdowns. For those of us who live in a permanent state of "meltdown," attirude becomes our mindset. (definition, mine).

I've blogged about attirude so I won't be redundant but will lift up those posts:

What I haven't done, is walk us through how to handle it. What to do about it. How to live with it in such a way that our families and friends aren't scared of us and so they can stop walking on eggshells around us.

Ideally, when we get that melanoma diagnosis we are placed in the hands of a psychiatrist who is trained to work with cancer patients. I don't think that ever happens though, but it should, whether we are diagnosed at stage 0, 4, or somewhere in between. Being given a diagnosis of melanoma without someone trained and on hand to immediately begin talking with us and walking us through the emotional changes is like handing the car keys to a four year old and starting the ignition for them, putting it in gear and saying, "Let's see what you can do and how you can handle this baby."

Who would ever do such a thing? And yet, countless times a day, around the world, people and families are thrown into the new world of melanoma in just such a way and are sent home to face this monster, learn about it on their own, and try and navigate new waters without drowning. The more they learn, the scarier the waters get. And let me tell you, scary, shark-infested waters can change our dispositions without us even realizing it. And when we do actually realize it, often we don't know how to change who we've become. We don't like it.

We don't like knowing what we know and living with what we live with. We don't like looking at our spouses and/or young children, or children of any age,  and fearing for their future and for our own. We don't like slowly (or quickly depending on circumstances) draining finances and taking away any security in order that we might live. We don't like knowing we may not see our kids grow up and what our absence may mean for their future. We don't like living with the fear of death and of the unknown and we watch what melanoma does to our peers and we know our turn is coming. Or may come. Or maybe not and we'll never know until we know. We don't like knowing that there's a chance we maybe could have lived differently and made better choices along the way and not be in this position and we can't turn the clock back. We don't like knowing that melanoma is now in our family history and those children we dearly love and would gladly lay down our lives for could be the next ones to get it and begin their own journey of horror.

And we don't like knowing what all this can do to our moods. Our emotions become fragile and we realize we really are mortal and our bodies really have let us down. And, maybe God has let us down, too. And we can feel hopeless and helpless and nobody understands and how can they when we don't understand ourselves? Often a psychiatrist is out of the financial picture. Clergy may help, but honestly, unless they've got their own melanoma diagnosis, they aren't going to fully understand. That doesn't mean, though, that good help isn't available from clergy, and if nothing else, a good compassionate listening ear is always useful. Friends and family can provide ears and help, but let's face it, they're the ones who catch our attirude.

Melanoma turns our world upside down. It just does.

We can't change our situation with melanoma, but, we can change how we cope with it. We can change who we are in our situation.

How? Well, first we need to admit we have a problem. If anyone has made remarks about your attitude, it may be time to take those remarks seriously. If your children aren't climbing in your lap like they used to or seem scared of you somehow, if the other parent is constantly telling them to let you rest or leave you alone, if people in your household act like they're walking on eggshells around you, it's time to admit you have a problem with your attitude.

And you may feel entitled to being snappy, angry, depressed, or full of self-pity. I'm not suggesting you don't have just cause...what I am suggesting however is the people you love the most in the world need you to get a grip. They want to help you and love you and support you, but you've got to let them. Driving them away doesn't help anyone. They didn't ask for this diagnosis anymore than you did and in a way, your diagnosis is theirs. Become a united team, not a divided household.

Use this as a teaching time for your children, if you have any. How do you want them to see you face this? As a victim or as a fighter and survivor? Should you eventually die from melanoma, do you want them to remember you as someone they were afraid of or as someone who brought them into the fight and loved them through the toughest of times? They need to see the tears, but they don't need a constant flood. There's a difference.

The strongest, bravest face you wear will help you also. Pump yourself up, don't pull yourself down. We know to do that physically. We need to do that spiritually and emotionally/psychologically as well. And when you change that attirude for the better, people are attracted to you and want to help. We need help from others. It's just that simple. If those killer attitudes aren't harnessed and brought under control, people (even family) aren't going to be there for you like they would otherwise.

Admitting the problem is key and then so is seeking help. Talk with someone who understands. This goes for the one with melanoma as well as for the closest family that lives with them. Patient: find someone who has melanoma, preferably your gender and at least your own stage and has traveled this road longer than you have. Caregiver: find someone who is a caregiver and has, preferably, been one longer than you and is your same gender.

If you can tap into at least one online support group, that will be most beneficial. Support of your opposite gender is great, but there will probably be things to discuss that you'll be more comfortable talking over with another person of your sex. Support groups will provide a mixing of genders, races, and ages.

There are several support groups for melanoma survivors and their families on Facebook. There's a thriving melanoma community just waiting to embrace all of you. You can plug in through Melanoma Prayer Center and message me there and let me know what type of support you need. If there's a support group where you live that will be great. Admit you need support and then take steps to get it.

And, learn yourself. Learn how to tell when a full-blown case of attirude is about to kick in and learn what works for you to either stop it or to lessen its effects. Often it will begin a couple of months before your next appointment of any kind. You might start to feel teary, antsy or forgetful. Irritate easily, or sleep more or less than usual. Your appetite may lessen or go through the roof and if you're a drinker you may find yourself reaching for more drinks than usual and at odd times of the day. You may become a hermit. Look for changes in behavior, dress, language, hygiene, etc. Those will be good indicators that something's going on inside and you may be building up in attirude. If you're living in a permanent state of any of these changes, please seek help for your sake and for your family's sake.

So, admit there's a problem, seek help and support, learn your own signs and symptoms, acknowledge your caregiver and family suffers from your attirude and insist they get help as well in living with you.

If you aren't a praying person, now's a great time to start and grow close to God. If you already are a praying person, now's a great time to grow closer to God. Whatever your religious upbringing, or lack thereof, now's a great time to get to know the God of the universe. Learning to live with melanoma is almost like going through a 12-Steps recovery program. It really is. We are powerless in the face of melanoma and can't do a thing about it on our own. Living with melanoma can make us feel like we're going insane and our lives are unmanageable. We decide the only way to get through it is to turn to God or a Power Greater than ourselves. We open our eyes to our own behavior, including any attirudinal tendencies. We talk it out with God and with another person. We ask God to not only remove our attirude problems but all our shortcomings and we pray against our melanoma also. We remember the pain our blow-ups have caused and apologize to those we've hurt and make any necessary amends. We stay conscious of our behavior and do our best to stay on top of it and when we mess up we take steps to correct it. We keep praying about ourselves and our families and we reach out to help others deal with their own melanoma and control the havoc it can cause in their lives. We pay it forward. We keep deciding over and over to live like the survivor we are and not like a victim.

That's the attirude that accompanies our diagnosis, whatever our stage. As we live with the disease, particularly if it worsens, our emotions can go, well, haywire is a fairly nice way to put it. If there is active tumor growth and those tumors are multiplying in organs, it's terrifying beyond words. There really are no words.

Again, please acknowledge your very real fears and anger, all the concerns you have. Don't be put off by the "strength" others exhibit. You don't see them when the lights are out and they're alone. You don't see them when their own attirude flares.

If there's money in the budget, or if insurance will pay for it, talk with your oncologist and ask them to refer you to a good psychiatrist who works with cancer patients. Again, tap into the online community for support. Remember, everything you are feeling, others are feeling. You will have no totally unique feelings or emotions. They may have your own individual twist, but plenty of people will understand and identify with whatever you are going through. Just be honest and you'll be surprised.

The melanoma road is rough and rocky. It sucks. It's painful and full of fear. It changes more than our physical health, it can change our mental health, our emotions, and our spiritual outlooks. Everybody lives with something. This is what we live with. But we have choices.

We choose whether to live as a victim or as a survivor and fighter. We choose whether to make our families victims or survivors and fighters, too.

We choose whether to close ourselves in and off from the world and from support or we choose to bare as much as we're comfortable baring and seek help with this journey.

We choose how much power and control we'll give melanoma. Will we let disease rule or will we let God rule?

We choose how to face this. We choose what we'll teach our children about life, death, and the dash in between. We choose what's important. We choose our priorities. We choose what changes we may need to make in our lives and in our ways of coping. We choose whether to rise above or sink below. We choose to be our best or to be our worst. We choose whether to work to bring melanoma down or not.

We're going to deal with attirude the rest of our lives. We choose whether we'll rule it or will it rule us? We choose how to use our attirude; will we learn to control it and focus it or let it run wild? Will we let it hurt us and our families or not?

Will we let God in the picture and help us or will we thumb our noses at Him?

I'm not grateful for melanoma and I sure hate my attirude. But they have helped me find my better self and for that

I am grateful.