Wednesday, November 9, 2011

Follow The MelaBlack Road

Life is a fascinating journey, to be sure! Filled with lots of people, fascinating and otherwise. Over the course of my 52 years I've been blessed to cross paths with some truly marvelous folks. None more marvelous than the ones I've met on MelaBlack Road and we travel together. We follow that road to our own version of Oz but we don't meet the same cast of characters that Dorothy met, nor do we get Ruby Red slippers that we can click the heels of and be transported back to life before getting on this road.

There are no Cowardly Lions, for all possess unbelievable courage.
There are no Scarecrows, for all possess more brainpower than you can imagine.
There are no Tinmen, for all possess heart in a God-sized capacity.

We may not have started off like that, but that is how we are transformed for this is truly a transformational journey. A journey none of us want, but the journey we are on nonetheless. It's a journey that requires getting our heads out of the sand and facing reality. It's a journey that compels us to want to travel this as a "road less taken" because we really do not want you traveling with us.

I've written about this before but there are aspects I haven't shared. Aspects, though, that I live with and you need to understand because I don't want you living them, one day, too. MelaBlack Road isn't "black" for nothing. It's paved with brokenness and death. In that pavement is grief, pain, financial ruin, and treatments that can kill the person before the cancer can. Above the tar is a rainbow. Absolutely there's a rainbow. It's colors are Resilience, Optimism, Yearning, Gratitude, Belief, Inspiration, and Vision. God is our pot of gold at both ends of it. The Beginning and the End.

When a person finds themselves on MelaBlack Road, it is a scary place. That Wicked Witch is called "the beast" and the beast has lots of cohorts it sends out to try and capture our thoughts, hearts, minds, souls, and bodies. Sometimes, they're successful. For a while. It may take a while, but we eventually get ourselves pulled together and our heads straight and get back on track.

See, one of the things we learn right off and that you really need to understand, is melanoma is NOT Just skin cancer. And it really shouldn't be referred to as "melanoma skin cancer" because that misleads people into thinking it is another skin cancer. It's not. Let me repeat that: It Is Not!

It's definitely scarring and disfiguring. It's also highly deadly. Once "melanoma" is attached to you, you are given two numbers: a stage and a statistic appropriate for your stage. And you also learn that, in a sense, you can throw all that out the window because once melanoma is a label you carry, your stage can change at any time. You can go from being stage 1 to stage 4 in a short matter of time.

I'll use myself as an example. Because I waited, prayed, hoped for a miracle, and was slow and fearful to act when my mole started changing, when I did get it removed and pathed, I was stage 3b right off the bat.

My lovely statistic: a 30-35 % chance of it coming back in ten years. When, or if, it does come back in those ten years, it WILL be in either my brain or my lungs. See, my mole was removed from my upper left arm and the cancer had already spread to my lymph nodes. ANY TIME someone has lymph nodes removed...it's not good. Other locations of melanoma, like on the leg, will mean the warrior is concerned with it spreading to their liver.

Oh, I may get other primaries in my skin or other moles, but I also live with the knowledge that I may have one, just one is all it takes, one renegade cell loose and traveling, waiting to land in and start growing in my brain. I'm three years into that stat and am still NED (no evidence of disease) and that can change tomorrow. "Just" skin cancer? NO!!!!

Now I know some of you are saying, "30-35% chance is pretty good. That means there's a 65-70% chance it won't." Yep. I know. That's what I'd like to bank on, too. The problem with that is that those numbers, on both sides of that stat are real, actual, breathing people. I've seen people on both sides of that stat. So far I'm on one side. Tomorrow I could find myself on the other. All stats, of anything, are made up of people living out that stat. They aren't just numbers.

If you're reading this, I'm pretty sure you have skin. It doesn't matter what color that skin is or how old or young it is. It does not matter. It doesn't matter if you have lots of moles or freckles or not. There are stats for all that, too, that can lull people into a false sense of security. If you have skin, get it checked once a year by a dermatologist that specializes in melanoma.

I don't want to meet you coming or going on MelaBlack Road. I have enough traveling companions and I love them dearly, but I have enough.

The trouble is, some of you will join me. Either the damage is already done and is just waiting to jump on you, or, you aren't listening. Smugness, while it may work in some social circles, is stupid, costly, and deadly. So is "denial." So is "fear and panic." So is "I can't afford to get checked."

You can't afford not to. Smugness doesn't cut it on this trip to Oz and it's not a destination to flaunt in your friends' faces. Get your head out of the sand and in a dermatologist's office before you find it in an oncologist's.

To all my friends on this journey, I love you and am grateful for your company. You inspire me and keep me going.

To all you others, do me a favor and make my journey worth it.

Make me grateful for it.

9 comments:

  1. Another great one Carol-love reading your work.

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  2. My surgeon told me once that a person's "odds" could be 99% on the side of benign. None of that matters, because for each individual person, the odds are either 100% or 0%.

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    1. And we won't know which odds are ours until we die. We're gonna beat it.

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  3. Someone I once told at stage IIIb with a less than 50% chance of surviving 5 years. She said it could be worse, I'm not sure how........

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    1. I almost wish they wouldn't give us the stats they do. They're wrong all the time. More and more, people are outliving their stats, and then there are the people whose melanoma worsens much more quickly than "predicted." As I've gone along, I've learned we're all given "today." Whether we have melanoma or not, each day is a gift. There are people who are in great shape but they won't see tomorrow. And then there's stage 3B melanoma me and while I may not see tomorrow either, there's a great chance I will. Life's unpredictable. Cherish today and your loved ones, live with no regrets. It can always be worse. Blessings!

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    2. WOW...U ALMOST DESCRIBED ME,EXCEPT WHEN DIAGNOSED WITH THIS WUSSY WHO HIDES AND JUMPS U WHEN U AINT LOOKING,I AM STAGE 4,NED,WOO HOO,IMMUNETHERPY....3 TIMES UNDER THE NIFE,28 LYMPH NODES FROM LEFT ARMPIT AND 3 FROM LEFT CROTCH(WHICH SWELLED MY PENIS AND LEG 4 2 DAYS)...INFECTIONS...PAIN(WHEN A DOCTOR TELLS U THERE WILL BE SOME DISCOMFORT HIT HIM IN THE MOUTH AND ASK HOW THAT DISCOMFORT WAS...LOL....
      THERE IS ONE THING THAT IS VERY SADDENING, THAT ACYUALLY HURTS THAN THE KNIFE....,IMMUNETHEREPY...
      ....MENTAL ANGUISH....ALLL THE MEDS.....ACTUALLY LEGALLY SPEEDBALLING....IS WHO MY FAMILY AND FRIENDS ARE....YEARS OF FRIENDSHIP AND LOVING DESTROYED BECUASE OF THIS WUSSY OF A DISEASE...
      I GREW UP ON THE STREETS...AFRAID TO GO HOME SOMETIMES....ALCOHOL,DRUGS...BLA BLA BLA.THINGS A KID SHOULDN'T SEE....
      WAS MARRIED FOR 13 YEARS...SHE HAD FOUR TEENAGERS...(I WAS PRETTY CRAZY)...WELL WE WERE RAISING HER OLDEST DAUGHTERS FIRST TWO CHILDREN AGES 3 AND 5.....WELL MY FIRST WIFE HAD A HEART ATTACK AT 2 IN THE MORNING IN MY ARMS...WITHIN A WEEK OR TWO HER DAUGHTER TOOK THE CHILDEREN FROM ME ....SO I LOST THREE PEOPLE AND MY WHOLE LIFE HAD CHANGED....RALLY LONG STORY SHORT ....WENT TO PRISON .....STRAIGHTENED UP SOME AND NEVER MOVED BACK THERE....THIRTEEN YEARS THEN THIS WUSSY HITS ME...THE LORD IS WORKING ME...I

      IF THIS IS GOOD AND U CAN RELATE A LITTLE TO MY JIBBERISH THEN I WILL TELL MORE OF THIS AWESOME JOURNEY!!!!

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    3. Hi friend, I'd love to hear more about your journey and how the Lord is working in your life! Blessings!

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  4. As always great posting!! I really enjoy reading your God given perspective about our journey (melanoma warriors within the melanoma community). Thank you for sharing your writing gift and faith in God within your posting so that others may know God:) Melanoma warrior, Donna Piunt

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  5. Each day is a gift indeed. Thanks for another wonderful post.

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Thank you.