Sunday, January 8, 2012

I Love To Tell The Story

It means so much to me. That's the story of how I came to be who I am. As a dear melapal said recently, "if they don't know the MELANOMA ME they don't know the REAL me."

As I approach another year, it strikes me that "my story" post is over a year old. I use that blog post to introduce myself every so often, on Melanoma Prayer Center and it's not the full story and it doesn't take into account the past year. There are other bits and pieces scattered throughout some other posts, but I think it is time. Time to pull it all together and fill in missing pieces.

(Since writing this post, I've also written this one with more updated material about my life).

For a kid, I lived in a fairly enviable part of town: across the street from Conway's only swimming pool, the ball field, and the Woman's Club Building where many teenage social functions were held. (That's Conway, NC, so as not to confuse anyone who might automatically think of the "other" Conway. Which, there are actually eight other Conways).

Born in late '59, I didn't take Johnson's Baby Oil bottle in hand until at least 1969. But once I had it, I knew how to use it and use it I did. I used it in my big back yard, at the pool, and at the beach. Being brunette, I tanned; rarely burning. But there are roughly three times I can recall going into super-broil mode. I burned. I didn't know.

Somewhere in my later teen years I began paying attention to talk that my maternal granddaddy had had several skin cancers removed. Sometimes I heard the word "melanoma." I also got it in my head that cancer, like some other stuff, skipped a generation which meant I'd be a prime candidate for it. I knew I didn't want it, even though I really didn't know what it was. I was somebody who knew what "cancer" was and did because a month before turning 13, my favorite aunt and person in the world died of brain cancer. I had a healthy respect for cancer and I wanted nothing to do with it, skin or any other kind. So I pretty much stopped laying out all together, except for our annual family vacation to the beach and I wanted to impress teenage beach bums. I had a killer figure back in the day, what can I say? But by then, I owned sun tan lotion. Remember that stuff? All brands smelled like coconut.

It was somewhere in my later teen years that I vividly remember my parents, particularly my Mama looking at this mole I had on my upper left arm. She hated the looks of it and nagged me incessantly to get it removed because she worried that I'd "have trouble with it one day." Again I'll refer you to that post instead of rehashing it.  I think it's worth the read. But then again, I'm prejudice!

I'm going to assume that you've read my post The Big "C" Is Not "Candy" and I'll fill in the three years since my diagnosis.

Long story short: melanoma me, aka, real me has been NED ever since. So far, there's no evidence of disease. You might want to read Where Is The Peace of Mind? for my personal melanoma stats and a little more of my story. And, for good measure Skin Cancer and Melanoma for Dummies.

I've learned a lot, met a bunch of wonderful people, shared stories I wish we didn't have in common, become something of a melanoma awareness advocate, begun Melanoma Prayer Center and Melanoma Grief Chapel, am planning to participate in an AIM at Melanoma Walk in Charlotte, NC in November, and become a Granny to a little granddaughter who will turn two this week and is the delight of my daughter and son-in-law and all of us! I've moved to a new church since this melajourney began! My son's a senior in college! Hubby and I celebrated 32 years of marriage this past November!

In other words, life has moved on. As it should. It has its routines. As it should. It also has its surprises. As it should. But now I know.

I know what I'm talking about when it comes to melanoma. I know that those few burns I got as a teenager set a stage for melanoma and I had no idea. All it takes is one. ONE. 1. Couple those burns with a family history, and that stage gets bigger. Throw in that blasted mole which really did turn out to be "trouble" with a capital "T" and we're in River City all over again. The stage takes on cinematic proportions. Unfortunately, no Music Man here. I wish! Nope! Beast moves in and he doesn't sing and dance, but he sure knows "trouble!"

Now I know what cancer is about and I was right, I don't want any part of it. And it's too late. But it's not the sum total of me. I am more. A lot more. And so is everyone I know with it. But it is part of who we are and it does color everything about us. Seriously, if you don't know the melanoma me, you don't know the real me.

The real me wants people to listen when I speak and read what I write. The real me wants people without melanoma to do that. All too often we in melaworld sing our songs with the choir to the choir. We know our songs!!!!!!!! We want those of you with skin but without any kind of skin cancer (which melanoma is so labeled), to pay attention to us, learn from us, act on what we say, and live so that our story doesn't become your story. We don't want you in our choir! We don't want you in our playpen. Call us selfish but we don't want you clogging up our doctors' offices and standing in line in front of us. We don't want to see your smooth face at the cancer clinic. The beast is ours and you can't have him.

The problem is, instead of finding us to be voices of experience and listening, many tune us out and will become intimately acquainted with the beast. Maybe die arm in arm with him. You won't like it. I promise. Most people with skin don't have a clue what skin cancer is and particularly what melanoma is and that cluelessness is deadly. And it's on the rise and hitting people younger and younger. It's a disease that disfigures before it kills. It's costly.

The real me lives with watching society around me not know. The real me knows melanoma isn't just skin cancer. The real me knows that skin cancer is cancer. The real me knows that you can't just cut melanoma out and be done with it. If you have that attitude, you also have a beast laughing loudly at you.

The real me lives with watching society act like one big ostrich that has a huge head in the sand with a big rear sticking out. Not a pretty sight at all. We tell that ostrich not to tan, either in the sun or in tanning beds, because no tan is worth dying over, and society acts like a spoiled brat throwing a temper tantrum. Society sticks its collective fingers in its ears and says, "lalalalalalalalalala" while we talk. We tell walking pieces of leather, and I don't mean "cows," of damaging rays and they don't understand that we're talking not only to them but about them. Society doesn't understand that "tan" may be sexy, but dead ain't. Society doesn't get it. Until they, one by one, do indeed, get it. Melanoma.

And they have to readjust their idea of who they really are and the melanoma them is the real them. And the vicious cycle continues. And we'll be here for you because we really aren't selfish.

That's a Reader's Digest Condensed Version of my three years. I've learned. I've grown. I've become a much better "Carol" than I've ever been. I've learned the value and preciousness of life. I've grown in my relationship with God in ways I didn't know a person could. My old priorities have been scrapped and new ones brought to the table. I like this table. Scripture, particularly the Psalms, have taken on new meaning in my life and helped me with this journey I'm on.  This real me would not have been possible without melanoma becoming part of me. Despite my fears and panic attacks, I'm actually a much more peaceful person. More loving. More generous. More cynical. Softer and tougher at the same time. I cry more and laugh louder. I apologize easier and take a harder line. I'm a bag that's been shaken up and the contents have yet to settle. They probably never really will. I'll always be that box that claims to weigh one amount but it's buyer beware. That's me. Huh?

I'm a contemporary Christian music fanatic. I love to crank up the volume and sing along. One of my current favorite songs challenges me to "just set your sail and risk the ocean there's only grace." That's where I am now with melanoma. The real me is setting my sail and risking the chaos. I've never been a risk taker in my life. I've learned I really will get only one life so I better make it count. But I've also learned the grace of God will never leave me. In this life, through this life, and into Eternal life. The song is Sometimes by the David Crowder Band.

One more current favorite helps me cope and helps define this new real melanoma me and that's Kristian Stanfill's Always. Here are the lyrics:

My foes are many, they rise against me
But I will hold my ground
I will not fear the war, I will not fear the storm
My help is on the way, my help is on the way

Oh, my God, He will not delay
My refuge and strength always
I will not fear, His promise is true
My God will come through always, always

Troubles surround me, chaos abounding
My soul will rest in You
I will not fear the war, I will not fear the storm
My help is on the way, my help is on the way

Oh, my God, He will not delay
My refuge and strength always
I will not fear, His promise is true
My God will come through always, always

I lift my eyes up, my help comes from the Lord
I lift my eyes up, my help comes from the Lord
I lift my eyes up, my help comes from the Lord
I lift my eyes up, my help comes from the Lord
From You Lord, from You Lord

Oh, my God, He will not delay
My refuge and strength always
I will not fear, His promise is true
My God will come through always, always

Oh, my God, He will not delay
My refuge and strength always, always
_______________________________________________________

Oh yeah!

You better believe I'm grateful!