Saturday, June 30, 2012

Melanoma-Pancreatic Cancer Link

A huge "thank you" to the person who did the search earlier today for how are melanomas and pancreatic cancer linked together. I have already blogged about the link between melanoma and breast cancer, and men, just like that post was for you, so's this one. For everyone with a pancreas, that is. I didn't know there is a link. But there is. My hunch is that eventually science will find all cancers are linked in various ways.

For now, people with a family history of melanoma need to add "pancreatic cancer" to their growing list of concerns. I'm the kind of person that finds knowledge invaluable and life-saving. I believe ignorance can be deadly. I may wish there was no link between these two cancers, but since there is, I want to know about it. And I need to pass along what I learn.

Since this is brand new to me and not to others who are already working on this, I'm simply going to provide a list of links and let you, the reader, follow these leads to your heart's content. Some are more technical than others. Please, if you have children, pay close attention to any warnings you may come across regarding vigilance where they are concerned. Keep in mind that this research appears to be fairly new and while the current statistics are relatively low, they still represent people and families.

http://www.cancer.net/patient/Cancer+Types/Familial+Malignant+Melanoma

http://www.cancer.net/patient/All+About+Cancer/Genetics/The+Genetics+of+Pancreatic+Cancer

https://www.myriadpro.com/test-offerings/genetic-testing/melaris?page_id=144

http://medschool.creighton.edu/medicine/centers/hcc/hct/pancreas/index.php

http://www.cancer.gov/cancertopics/pdq/genetics/skin/HealthProfessional/page4

Again, thank you to the person who initiated this with a mere search term. This post isn't meant to frighten but to inform. Knowledge is power.

And I am grateful that is so.

Thursday, June 28, 2012

"Doctor's Duty Of Care" Practice and Malpractice In Melanoma

This is going to be awkward, let me admit to that right upfront. This is one I wish I didn't feel compelled to write, but do. Let me begin by stating that I'm from a "medical" family. My Daddy is a retired dentist. My husband and daughter are both pharmacists as is a brother-in-law, as was my father-in-law and his uncle before him. I have a great medical team. I've always had great medical/dental care. From the moment I first presented my mole to a PA at a Duke Urgent Care for removal, I've been in the Duke system and under the care of melanoma specialists: dermatologist, surgical oncologist, and if ever needed an oncologist (whom I've met a couple of times but, as yet, have not needed the services of. But she's there and has my file if I ever need her).

I've been aware, all my life (well, since I was old enough to actually be aware of this), that not everyone has great medical care, even adequate care. I wish that wasn't the case, but we all know it is. In the world of melanoma I find myself constantly asking people if they are in the care of melanoma specialists as that is crucial. Even then not all specialists are created equal. Some are better than others. Aim At Melanoma has a great tool for finding an oncologist that specializes in melanoma. This list is just for oncologists, but generally, where you find them you'll also find melanoma specialist dermatologists and surgical oncologists.

I am also aware that before we ever get to a specialist, we are diagnosed, usually, by either a dermatologist or primary care physician. Again, some are better than others and all are not created equal. The minute they say the word "melanoma" the next words out of their mouth should be, "Let's get you into the hands of Dr. So-and-So, the best melanoma specialist in our area." In an ideal world that is always said! That ideal world does exist in some places, as I, myself, live there. When I received my diagnosis, in a voice-mail from the doctor at the Urgent Care, after he said my mole had melanoma in it, he said, "I've made you an appointment with a Duke oncologist to see what we're dealing with." That Duke oncologist turned out to be the top melanoma specialist at Duke.

People, there are standards of care when it comes to melanoma. Particularly read this page and the page after it. You'll see what to expect overall and by stage. This is what to expect. Period. If this isn't happening to you then you've got the wrong doctor. Get referred to another one, even if you are seeing a "melanoma specialist." Remember, not all are created equal.

Now for the awkward part. I'm becoming increasingly aware of sheer ignorance on the part of some in the medical profession when it comes to melanoma. Maybe it's arrogance on the part of some as they may not like to admit they don't know what to do. Maybe it's sheer negligence. Whatever it is, if you have been diagnosed with melanoma, at any stage, and your care does NOT line up with the standards as found at the National Cancer Institute (the two links in the above paragraph) then your life depends on you getting out from under the care of your present doctor that is treating you for melanoma. That simple.

And document what your "care" has been as you may have grounds for a medical malpractice claim. I'm learning of some very alarming practices when it comes to the treatment of melanoma, and not from already questionable clinics and programs. I'm talking about doctors whom their patients trust. When we are given that diagnosis we're stunned to say the least and it's a natural reaction to trust, automatically, the doctor who gives that diagnosis. We already believe our best interests are at heart and we'll do whatever we're told. Often without stopping to think or question.

Thinking and questioning are vital activities! If something doesn't make sense, it may be stupid or even fatal to follow blindly and do as told. You are your own best advocate, maybe even your only advocate, and it's up to you to open your mouth and ask questions. It's up to you to insist on seeing a specialist and it's up to you to demand that second, or third, opinion if you want to.

It's up to you to know the "Doctor's Duty Of Care." This is what to expect from your doctor, any doctor, about any reason to have a doctor. This must be coupled with the melanoma standards of care. If you become aware that your doctor may not have lived up to the standards then this will help you know if you're possibly the victim of negligence. This is two separate documents from the same site and there are links you can follow in the articles for more information.

Melanoma is something of a "take charge" disease. Take charge of it or it will surely take charge of you. If it has already spread to at least one lymph node then it is already somewhere in the stage 3 spectrum. If it has spread to at least one vital organ then it is already somewhere in the stage 4 spectrum. It is beneath the body surface and requires being treated as such. If it has not spread to lymph nodes or organs then it is somewhere in the 0-2 spectrum. All must be staged accurately and all must be treated stage appropriately. Not all doctors are able to do that, unfortunately. God bless those that can and do and they're in the majority. Most of us have nothing to worry about when it comes to our standard of care.

Some of us do though and I hope this has proved helpful and provided food for thought and information to set you on the right path.

Word to the wise: if, after reading this and the links within, you have a sick gut feeling that you're not being treated as you should be, take action immediately. ASAP means ASAP. With melanoma you don't have time to sit and worry or cry. Use the Aim At Melanoma Find A Doctor link and do just that. Find a doctor. Call the office, explain your situation and make an appointment for as absolutely soon as possible. Be your own advocate and don't be put off for even a month if at all possible. If you can't be worked in within a week, ask to speak to the next person higher on the ladder and keep climbing that ladder as long as you have to until you talk with someone who will get you in ASAP to see what's going on with you and get you on the right course. Melanoma, if it's in your body, isn't going to wait nicely. It's active and growing.

And that's damn scary. I know. But it's also the truth. It's not going to play around and neither will I.

Somebody's got to be honest with you and give you a fighting chance. And if that person is me, well, then...

I'm grateful for the opportunity. Let whosoever has ears to hear, listen.

Monday, June 25, 2012

A New Hope And A New Tribute For A 13 Year Old Warrior

The following message was in my email this morning and was the first thing I saw after logging on:

Evan's Family has left a new comment on your post "They Dare To Care":

Thank you for being willing to gather such an amazing group of personal reflections on such an insipid and ruthless enemy. Our collective goal appears to not just take on the emotional reality of our lives, but to spur on the work that will render our stories as footnotes in history, that a curative process might be discovered so that others may only experience our grief through our words and not their own experience. 


Evan's Family lives in my home state, North Carolina, and they write one of the most touching blogs I've ever read about their journey, as a family, as Evan battles melanoma. Evan is 13 years old. He and his family have fought this "insipid and ruthless" enemy for four years. Evan's battle is drawing to a close, a battle which officially began November 28, 2007.

I wish I could say I've not only been following this blog for a while, but that I've gone and met this inspiring family. But neither would be true. I only recently learned of both family and blog. I encourage anyone who comes across this post to drop whatever you're doing and read theirs. And say a prayer or two for them during this season. Say a prayer for all families facing a similar time.

Their first post was titled A New Hope and the last line in it is, "Thank you for your interest, prayers, and ongoing caring support." They make a commitment to share their son and his triumphs and trials with the world, they covet prayers as what happens happens, and they realize the need for ongoing caring support as they do the un-do-able, that which is the stuff of every parent's nightmares.

They share their 8 year old child who learns he has something called "melanoma" and they share their 9 year old who turns 10 who sees 11 who becomes 12 and who has become a man of 13, wise beyond what a child should be, and seen and endured more than anyone so young should. 

We think of melanoma as a disease that older, male Caucasians get. We hear the new facts and figures that tell us it's also the disease of young women who go to tanning beds. We hear what we want to hear and see what we want to see. Rarely do we hear of children getting melanoma and rarely do we see any die from it. But they do. We have to open our eyes and ears, see and hear. We have to stand and honor those who walk this road and their families who walk it with them, for none walk alone.

It's not just about sharing our shared "emotional reality". It's not all about "spurring (sic) on the work that will render our stories as footnotes in history". We all share and work for that day when there's a cure so that "others may only experience our grief through our words and not their own experience."

None of us, Evan's family included and foremost, want other families to experience firsthand what they are experiencing. None of us want other children to go through what Evan has endured.

The current numbers tell us that 500 children are diagnosed with melanoma each year and that number is on the rise. That's in the USA alone. That may not sound like "many." But those are 500 children in 500 families and that's a lot when it's yours'. And it could be. It can happen in any family across the world. At any time.

Parents, love your children. We know what causes many melanomas, but not all, and not melanoma in children. Work with us to find a cure so the pain doesn't reach into your family.

As I read Evan's story, I find a child of childlike faith, that faith we are told to have and that's the faith I want. In their Confirmation - Frustration post, they share the letter they wrote Evan for his Confirmation (click on the link and scroll down). That particular post ends with this:

You are our hero
as you battle against unseen enemies;
but we know that it is your Hero
that gives you
passion,
peace,
wisdom
and joy;
So remember:
Dead heroes save no lives.
And keep on living,
for today is the first day in the rest of your life

All our Love

What an awesome, inspiring sentiment! What an amazing thing to write to your child, a little over a year ago today as I write.

Thank you, Evan and family, for the hope and new hope you give out of your pain.

We all honor you and all families with children who have melanoma, and we honor the children who are our heroes as they "battle against unseen enemies."

We are grateful that you share your battle with us. Our prayers are with you. Blessings.

Sunday, June 24, 2012

Scars

by Melanoma Prayer Center on Saturday, July 9, 2011 at 12:33pm ·

One of my all-time, favorite Disney movies is The Lion King. I love the story, the circle-of-life theme, the music...can we say "Hakuna Matata?" And, yes, I love the characters. Mufasa, Simba, Nala. Scar. I love Scar. While it's true that Scar is full of evil and malice, he plots and kills his brother Mufasa, Scar is a scarred soul and he wears his scars for all the world to see. One is above an eye; others are seared into his heart and personality. I'm not going to make excuses for Scar's nasty behavior and I can't attribute it to great screen writers because there's a little (or a lot) of Scar in us all. We may not plot murder and mayhem, but we do all carry our scars of life with us. Some are visible to others and some are internal. We all have both kinds.

One of my favorite movie lines comes from Scar. I would often quote it to my children, when necessary, in my best Scar voice, "Life's not fair!" (And the choir said "AMEN!") We know that though, don't we? GOD is always just and fair, even when we don't understand; but life...well, sometimes life can be overwhelming. Difficult. Make us cry. Make us question. Make us holler that Life's Not fair! Cancer isn't fair. Melanoma isn't fair. It's not "fair" that children get it. It's not "fair" when teens get it. It's not "fair" when I get it...even when I dared melanoma to kick me and it did...it's not fair. It's not fair when it threatens my life AND leaves scars.

Scars for everyone to see. Scars that make people hide their faces, avert their eyes, make me cry at their repulsion. Scars that divulge my journey to strangers. Scars that will heal and fade over time, but scars that I will still carry in my heart. In my own case, my scars are hidden by a compression sleeve because I quickly developed lymphedema in my left arm. My sleeve-covered scars lead to stares and questions...uncomfortableness on the part of others...

Scars that can make us feel ugly, doubt if anyone will or can love us, make us doubt our self-worth.

And then there's God! God calls out to us through all our doubts, fears, tears, frustrations, anguish, those emotional & psychological & spiritual scars...and God looks past our physical scars...and the Lord Who creates us calls us "beautiful!" "made in His image!" "the apple of His eye!" "His own!"

1 Samuel 16: 7 (The Message):
But God told Samuel, "Looks aren't everything. Don't be impressed with his looks and stature. I've already eliminated him. God judges persons differently than humans do. Men and women look at the face; God looks into the heart."

We like to impress people. We like to catch people's eyes. We like to be noticed, flattered, dress nicely, look good. While that's human, it can also be superficial, shallow, and dangerous.

God knows our scars, those seen and unseen. We look at, cry about, cover the seen scars. God bypasses them and looks straight into our hearts!

Our worth is not determined by scars! Or bald heads! Or IVs! Or drainage tubes! Our worth is not determined by how well we cover up those things we wish to hide!

We have worth, beauty, value because we are made in God's image, because He loves us regardless of what the world sees, and because we are His. He chose to become flesh for YOU! He chose to live a while on this earth for YOU! He chose to die for YOU! And He chose to conquer everything in this world that produces scars, visible and invisible, for YOU! And that includes melanoma!

We can rejoice with Job (19: 25) that "I know my Redeemer lives."
We can echo the Psalmist in 34: 22 "But the LORD will redeem those who serve him. No one who takes refuge in him will be condemned."
We can live into Paul's advice to the church at Rome in Romans 12: 2 Don't copy the behavior and customs of this world, but let God transform you into a new person by changing the way you think. Then you will learn to know God's will for you, which is good and pleasing and perfect.
We can live into Paul's word to the Galatians in 6: 15-16 It doesn't matter whether we have been circumcised or not. What counts is whether we have been transformed into a new creation. May God's peace and mercy be upon all who live by this principle; they are the new people of God.

May God take your scars, all your scars, and redeem them and transform them. May they be used by Him in ways you cannot imagine! May your scars tell your story, be a witness to help others, and be a visual reminder of God's grace in your life.

Lord, in Your mercy, You have chosen to allow melanoma into my life and while I would rather not have it or have the accompanying scars, I do. Transform my attitude towards all of this. Take the brokenness I can feel and remind me that I'm clay, You're Living Water, and wash over me and make me beautiful! Take my life, my story, my pain and my scars and use them all to Your glory. Give unholy things a holy purpose. Thank You God. Amen.

Friday, June 22, 2012

Tanning? Let’s Focus On What You CAN Do!


College Kid, while he detests the tanned look, isn’t thrilled with our legislative efforts against it. Keep in mind he’s not quite 22. In his young mind what we’re trying to achieve is reminiscent of Prohibition and we’re going to create more illegal tanners than we otherwise would have and, in short, tanning won’t be going anywhere. Let’s say he’s right. People do have a history of not liking to be told what they cannot do. Parents don’t like to be told what their children cannot do, especially when they approve of the activity in question.

OK, instead of me telling you what you and your children cannot and should not do when it comes to tanning, please let me tell you what you can do while you get your glow on.

You can damage your skin and allow your children to damage theirs’. Irreparably.

You can get well acquainted with leather. Personally. That’s what your skin will look like over time.

You can look far older than you really are. You can like that immensely. I know your plastic surgeon will thank you.

You can spend a lot of money, over time and depending on how many people you are paying for, to tan. Not too terribly smart because you may need that money later because…

You can get skin cancer.

You can get melanoma.

You can get scars and disfigured.

You can change your life.

You can do all that for your children.

You can die.

You can do all this while you’re young.

Your children can do this while they’re young.

You can do nothing to stop this from happening once it gets set in motion.

You can stop now.

You can never start.

You can choose to have great skin.

You can choose to look young (while your friends don’t).

You can choose life for you and for your children.

These are all things you can do with or without legislation.

You can drastically lessen your chances and the chances of your children of getting any skin cancer or melanoma.

You can be grateful.

Thursday, June 21, 2012

Melanoma: Knowing and Not Knowing

An interesting perk of blogging, at least on Google's Blogger, is being able to see what your traffic sources are and what search terms were used. I'm finding some that thrill me. People are starting to be directed to this one, more and more, when they are looking for a particular blogger with melanoma other than me. Word must be getting out about my post that lists them. PS, if there are others, and I'm sure there are, please send the URL and I'll add to what's already there.

I'm also finding that people want to know about "knowing" and "not knowing" if they have melanoma. What follows are a few actual search terms which reflect actual feelings and people.

i have melanoma will i die I know what this person is asking and they aren't looking for a short, snippy "We will all die, so, yes, you'll die." This person is looking for hope and reassurance that melanoma won't be the reason. This person wants some compassion and is likely a new diagnosee and is scared to death as they are confronted over and over again with the hard truth that there is no cure for melanoma. Treatments are getting better, people are living longer. But not 100% are living better or longer. Far from it.

To anyone that has melanoma and wants to know will you die from it, that's one question you won't find answered online for nobody can, in all honesty, tell you that. There's a good chance you will. Even then, no one can give you any specifics. People have been known to be in remission for a few decades and it comes back with a vengeance. People have been known to face one battle after another for decades and maybe actually die with melanoma but not from melanoma. If this is your concern, the best anyone can tell you is keep your appointments, eat right, exercise, know your body and stay on top of any concerns and changes, be proactive as best as you can and be reactive when necessary. Have the best doctors you can, melanoma specialists if at all possible, and even then always be your own best advocate. You need to know what's happening with melanoma, treatment options and available clinical trials. YOU need to know. Don't expect your doctor, no matter how good he or she is, to know everything there is to know or to know what you're interested in pursuing. You're the one with melanoma, not your doctor. This is your life, your battle, and if you do die from it it will be your death, not your doctor's. Fight this so you'll have no regrets no matter what course your fight may take. And pray. Now is a really good time to get to know God if you don't already. The spiritual and physical support a relationship with God provides is vital to tackling this. So is support from others with this disease. Tap into the growing online community, particularly on Facebook and with other bloggers.

how do you get to stage 4 melanoma and not know you That's what shows up but I'm guessing there's actually an ending to that query that goes something like this "have?"  It happens. Two ways: one, a place can be ignored and left on the body for so long that by the time the person presents the place to a doctor to be removed, the melanoma has already spread beyond the regional lymph nodes, and is in the brain, stomach, liver, lungs, or in lymph nodes that are distant from the first lymph node involvement. Stage 4.  This is the person who is stage 4 from the moment of diagnosis.This is the reason it is crucial to get ALL concerns checked out, which in my book means getting them removed and pathed, early and not letting them sit there for whatever reason. The second way this can happen, be stage 4 and not know, is for there to be a cell that has broken loose and traveled either through the lymphatic system or the blood stream to vital organs. Stage 4 ALWAYS means at least one vital organ is involved, or distant lymph nodes are. A person can go from stage 1 to stage 4 quickly, in a matter of months or a few years (or less) or it can take a long time...if it ever happens. Remember what I wrote with "i have melanoma will i die." Melanoma works quietly while it does its deadly business. And people can't look at us and tell when we're in treatment, either. We look good, for the most part...may not feel good, but look great. Again, because this can happen, be stage 4 and not know, stay on top of your disease so, prayerfully and hopefully, it doesn't stay on top of you.

can you live not knowing you have melanoma Yes, you can, technically. How long though is another issue altogether. Read all of the above and if you have issues and concerns, get them checked out, get those "issues and concerns" removed and pathed...don't settle for "watching" them. Don't take the attitude that "ignorance is bliss." Ignorance is deadly when it comes to melanoma. Yes, there will be procedures, tests, cutting and stitches, healing, drainage (maybe), surgeries, treatments, waiting, tears, anger, frustration, attirude, changes of every facet of your life...IF you have melanoma...but there will also be a chance to fight for that life you love. If you don't know and refuse to find out you aren't doing yourself, or anyone you love and loves you, a favor. If you try to live not knowing AND you actually have melanoma, there's no nice way to say this, you're signing your death certificate. DON'T do that! Find out. Prepare for battle if you have it. Maybe you won't have it. Find that out too. It may be what concerns you will really be basal cell or squamous cell. Find out! It may be merkel cell carcinoma. Find out! It may be pre-cancerous or nothing. Find out! The life you save will be your own!

The long and short of this is: Melanoma that is caught and treated isn't necessarily a death sentence. Melanoma that is NOT caught NOR treated, either with surgery and/or other types of treatment, is.

Scary? You bet. Opening Pandora's Box not knowing what will jump out? Absolutely. Life changing? Yes. Melanoma is nothing to be sugar-coated. I'm stage 3b and I wish there was a way to sugar-coat it or even make it seem like less than it is. Which, is sugar-coating, I guess. Too much "sugar" isn't good for us and "sugar-coating" hides what's inside. Sugar-coated melanoma is still melanoma but deadlier because it masks the reality. We have to live in the real world and fight a real disease.

Give yourself every advantage.

Knowing and not knowing are the choices. Life and death are the results.

Choose wisely. The life and the death are yours.

Be grateful for the day and age we live in and the advances being made. Be grateful for those that have fought and opened doors that our fight has more weapons in our arsenal.

Be grateful you have a choice.

Wednesday, June 20, 2012

Life Moves Forward

And we know that, don't we? We may not like it sometimes, but that's the way the world works. Why can't our vision get right with the world? Why do we insist, so often, on not only looking back but trying to somehow live in the past as if that will bring someone back or return us to better times? Sometimes we can live as if clinging to the past will change the present and put the future on a different path...a path of our own choosing and making.

Life doesn't work that way. Things happen, diagnoses are made, people die, and we have to move on. We can stay in our jammies and bed for a week if we want to but the calendar marches on and seconds will give way to minutes and hours. Nothing will ever reverse and go back like it was. Ever.

We have to face that. We can't go back and change our lives and alter the decisions we made that culminated in this moment. We can, and do, say that we wish we could go back and change things that 20/20 hindsight has revealed would have been good to change. But the world won't let us and God has yet to make that option available to any of us.

We can visit those times and people in our dreams, memories, and prayers. But we are still faced with facing the present. As it is and not as we wish it could be. And God, in His infinite wisdom, gives the blueprint for moving on. No matter what the past was, no matter what the present is, no matter what the future will be, He tells us how to live in the right now for the right now is all we really have.

In Jesus' Sermon on the Mount, Matthew chapters 5-7, we are told how to live in any situation and since this needs no help from me, I give you that from The Message, followed by a link to the passage where you can change translations. Let it speak to you where you are right now. Squirming is a desired result. So is redemption, change, transformation.

Matthew 5

You're Blessed
 1-2 When Jesus saw his ministry drawing huge crowds, he climbed a hillside. Those who were apprenticed to him, the committed, climbed with him. Arriving at a quiet place, he sat down and taught his climbing companions. This is what he said:  3"You're blessed when you're at the end of your rope. With less of you there is more of God and his rule.
 4"You're blessed when you feel you've lost what is most dear to you. Only then can you be embraced by the One most dear to you.
 5"You're blessed when you're content with just who you are—no more, no less. That's the moment you find yourselves proud owners of everything that can't be bought.
 6"You're blessed when you've worked up a good appetite for God. He's food and drink in the best meal you'll ever eat.
 7"You're blessed when you care. At the moment of being 'care-full,' you find yourselves cared for.
 8"You're blessed when you get your inside world—your mind and heart—put right. Then you can see God in the outside world.
 9"You're blessed when you can show people how to cooperate instead of compete or fight. That's when you discover who you really are, and your place in God's family.
 10"You're blessed when your commitment to God provokes persecution. The persecution drives you even deeper into God's kingdom.
 11-12"Not only that—count yourselves blessed every time people put you down or throw you out or speak lies about you to discredit me. What it means is that the truth is too close for comfort and they are uncomfortable. You can be glad when that happens—give a cheer, even!—for though they don't like it, I do! And all heaven applauds. And know that you are in good company. My prophets and witnesses have always gotten into this kind of trouble.
Salt and Light
 13"Let me tell you why you are here. You're here to be salt-seasoning that brings out the God-flavors of this earth. If you lose your saltiness, how will people taste godliness? You've lost your usefulness and will end up in the garbage.  14-16"Here's another way to put it: You're here to be light, bringing out the God-colors in the world. God is not a secret to be kept. We're going public with this, as public as a city on a hill. If I make you light-bearers, you don't think I'm going to hide you under a bucket, do you? I'm putting you on a light stand. Now that I've put you there on a hilltop, on a light stand—shine! Keep open house; be generous with your lives. By opening up to others, you'll prompt people to open up with God, this generous Father in heaven.
Completing God's Law
 17-18"Don't suppose for a minute that I have come to demolish the Scriptures— either God's Law or the Prophets. I'm not here to demolish but to complete. I am going to put it all together, pull it all together in a vast panorama. God's Law is more real and lasting than the stars in the sky and the ground at your feet. Long after stars burn out and earth wears out, God's Law will be alive and working.  19-20"Trivialize even the smallest item in God's Law and you will only have trivialized yourself. But take it seriously, show the way for others, and you will find honor in the kingdom. Unless you do far better than the Pharisees in the matters of right living, you won't know the first thing about entering the kingdom.
Murder
 21-22"You're familiar with the command to the ancients, 'Do not murder.' I'm telling you that anyone who is so much as angry with a brother or sister is guilty of murder. Carelessly call a brother 'idiot!' and you just might find yourself hauled into court. Thoughtlessly yell 'stupid!' at a sister and you are on the brink of hellfire. The simple moral fact is that words kill.  23-24"This is how I want you to conduct yourself in these matters. If you enter your place of worship and, about to make an offering, you suddenly remember a grudge a friend has against you, abandon your offering, leave immediately, go to this friend and make things right. Then and only then, come back and work things out with God.
 25-26"Or say you're out on the street and an old enemy accosts you. Don't lose a minute. Make the first move; make things right with him. After all, if you leave the first move to him, knowing his track record, you're likely to end up in court, maybe even jail. If that happens, you won't get out without a stiff fine.
Adultery and Divorce
 27-28"You know the next commandment pretty well, too: 'Don't go to bed with another's spouse.' But don't think you've preserved your virtue simply by staying out of bed. Your heart can be corrupted by lust even quicker than your body. Those leering looks you think nobody notices—they also corrupt.  29-30"Let's not pretend this is easier than it really is. If you want to live a morally pure life, here's what you have to do: You have to blind your right eye the moment you catch it in a lustful leer. You have to choose to live one-eyed or else be dumped on a moral trash pile. And you have to chop off your right hand the moment you notice it raised threateningly. Better a bloody stump than your entire being discarded for good in the dump.
 31-32"Remember the Scripture that says, 'Whoever divorces his wife, let him do it legally, giving her divorce papers and her legal rights'? Too many of you are using that as a cover for selfishness and whim, pretending to be righteous just because you are 'legal.' Please, no more pretending. If you divorce your wife, you're responsible for making her an adulteress (unless she has already made herself that by sexual promiscuity). And if you marry such a divorced adulteress, you're automatically an adulterer yourself. You can't use legal cover to mask a moral failure.
Empty Promises
 33-37"And don't say anything you don't mean. This counsel is embedded deep in our traditions. You only make things worse when you lay down a smoke screen of pious talk, saying, 'I'll pray for you,' and never doing it, or saying, 'God be with you,' and not meaning it. You don't make your words true by embellishing them with religious lace. In making your speech sound more religious, it becomes less true. Just say 'yes' and 'no.' When you manipulate words to get your own way, you go wrong.
Love Your Enemies
 38-42"Here's another old saying that deserves a second look: 'Eye for eye, tooth for tooth.' Is that going to get us anywhere? Here's what I propose: 'Don't hit back at all.' If someone strikes you, stand there and take it. If someone drags you into court and sues for the shirt off your back, giftwrap your best coat and make a present of it. And if someone takes unfair advantage of you, use the occasion to practice the servant life. No more tit-for-tat stuff. Live generously.  43-47"You're familiar with the old written law, 'Love your friend,' and its unwritten companion, 'Hate your enemy.' I'm challenging that. I'm telling you to love your enemies. Let them bring out the best in you, not the worst. When someone gives you a hard time, respond with the energies of prayer, for then you are working out of your true selves, your God-created selves. This is what God does. He gives his best—the sun to warm and the rain to nourish—to everyone, regardless: the good and bad, the nice and nasty. If all you do is love the lovable, do you expect a bonus? Anybody can do that. If you simply say hello to those who greet you, do you expect a medal? Any run-of-the-mill sinner does that.
 48"In a word, what I'm saying is, Grow up. You're kingdom subjects. Now live like it. Live out your God-created identity. Live generously and graciously toward others, the way God lives toward you."

Matthew 6

The World Is Not a Stage
 1 "Be especially careful when you are trying to be good so that you don't make a performance out of it. It might be good theater, but the God who made you won't be applauding. 2-4"When you do something for someone else, don't call attention to yourself. You've seen them in action, I'm sure—'playactors' I call them— treating prayer meeting and street corner alike as a stage, acting compassionate as long as someone is watching, playing to the crowds. They get applause, true, but that's all they get. When you help someone out, don't think about how it looks. Just do it—quietly and unobtrusively. That is the way your God, who conceived you in love, working behind the scenes, helps you out.
Pray with Simplicity
 5"And when you come before God, don't turn that into a theatrical production either. All these people making a regular show out of their prayers, hoping for stardom! Do you think God sits in a box seat?  6"Here's what I want you to do: Find a quiet, secluded place so you won't be tempted to role-play before God. Just be there as simply and honestly as you can manage. The focus will shift from you to God, and you will begin to sense his grace.
 7-13"The world is full of so-called prayer warriors who are prayer-ignorant. They're full of formulas and programs and advice, peddling techniques for getting what you want from God. Don't fall for that nonsense. This is your Father you are dealing with, and he knows better than you what you need. With a God like this loving you, you can pray very simply. Like this:

   Our Father in heaven,
   Reveal who you are.
   Set the world right;
   Do what's best— as above, so below.
   Keep us alive with three square meals.
   Keep us forgiven with you and forgiving others.
   Keep us safe from ourselves and the Devil.
   You're in charge!
   You can do anything you want!
   You're ablaze in beauty!
      Yes. Yes. Yes.
 14-15"In prayer there is a connection between what God does and what you do. You can't get forgiveness from God, for instance, without also forgiving others. If you refuse to do your part, you cut yourself off from God's part.
 16-18"When you practice some appetite-denying discipline to better concentrate on God, don't make a production out of it. It might turn you into a small-time celebrity but it won't make you a saint. If you 'go into training' inwardly, act normal outwardly. Shampoo and comb your hair, brush your teeth, wash your face. God doesn't require attention-getting devices. He won't overlook what you are doing; he'll reward you well.
A Life of God-Worship
 19-21"Don't hoard treasure down here where it gets eaten by moths and corroded by rust or—worse!—stolen by burglars. Stockpile treasure in heaven, where it's safe from moth and rust and burglars. It's obvious, isn't it? The place where your treasure is, is the place you will most want to be, and end up being.  22-23"Your eyes are windows into your body. If you open your eyes wide in wonder and belief, your body fills up with light. If you live squinty-eyed in greed and distrust, your body is a dank cellar. If you pull the blinds on your windows, what a dark life you will have!
 24"You can't worship two gods at once. Loving one god, you'll end up hating the other. Adoration of one feeds contempt for the other. You can't worship God and Money both.
 25-26"If you decide for God, living a life of God-worship, it follows that you don't fuss about what's on the table at mealtimes or whether the clothes in your closet are in fashion. There is far more to your life than the food you put in your stomach, more to your outer appearance than the clothes you hang on your body. Look at the birds, free and unfettered, not tied down to a job description, careless in the care of God. And you count far more to him than birds.
 27-29"Has anyone by fussing in front of the mirror ever gotten taller by so much as an inch? All this time and money wasted on fashion—do you think it makes that much difference? Instead of looking at the fashions, walk out into the fields and look at the wildflowers. They never primp or shop, but have you ever seen color and design quite like it? The ten best-dressed men and women in the country look shabby alongside them.
 30-33"If God gives such attention to the appearance of wildflowers—most of which are never even seen—don't you think he'll attend to you, take pride in you, do his best for you? What I'm trying to do here is to get you to relax, to not be so preoccupied with getting, so you can respond to God's giving. People who don't know God and the way he works fuss over these things, but you know both God and how he works. Steep your life in God-reality, God-initiative, God-provisions. Don't worry about missing out. You'll find all your everyday human concerns will be met.
 34"Give your entire attention to what God is doing right now, and don't get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes.

Matthew 7

A Simple Guide for Behavior
 1-5 "Don't pick on people, jump on their failures, criticize their faults— unless, of course, you want the same treatment. That critical spirit has a way of boomeranging. It's easy to see a smudge on your neighbor's face and be oblivious to the ugly sneer on your own. Do you have the nerve to say, 'Let me wash your face for you,' when your own face is distorted by contempt? It's this whole traveling road-show mentality all over again, playing a holier-than-thou part instead of just living your part. Wipe that ugly sneer off your own face, and you might be fit to offer a washcloth to your neighbor.  6"Don't be flip with the sacred. Banter and silliness give no honor to God. Don't reduce holy mysteries to slogans. In trying to be relevant, you're only being cute and inviting sacrilege.
 7-11"Don't bargain with God. Be direct. Ask for what you need. This isn't a cat-and-mouse, hide-and-seek game we're in. If your child asks for bread, do you trick him with sawdust? If he asks for fish, do you scare him with a live snake on his plate? As bad as you are, you wouldn't think of such a thing. You're at least decent to your own children. So don't you think the God who conceived you in love will be even better?
 12"Here is a simple, rule-of-thumb guide for behavior: Ask yourself what you want people to do for you, then grab the initiative and do it for them. Add up God's Law and Prophets and this is what you get.
Being and Doing
 13-14"Don't look for shortcuts to God. The market is flooded with surefire, easygoing formulas for a successful life that can be practiced in your spare time. Don't fall for that stuff, even though crowds of people do. The way to life—to God!—is vigorous and requires total attention.  15-20"Be wary of false preachers who smile a lot, dripping with practiced sincerity. Chances are they are out to rip you off some way or other. Don't be impressed with charisma; look for character. Who preachers are is the main thing, not what they say. A genuine leader will never exploit your emotions or your pocketbook. These diseased trees with their bad apples are going to be chopped down and burned.
 21-23"Knowing the correct password—saying 'Master, Master,' for instance— isn't going to get you anywhere with me. What is required is serious obedience—doing what my Father wills. I can see it now—at the Final Judgment thousands strutting up to me and saying, 'Master, we preached the Message, we bashed the demons, our God-sponsored projects had everyone talking.' And do you know what I am going to say? 'You missed the boat. All you did was use me to make yourselves important. You don't impress me one bit. You're out of here.'
 24-25"These words I speak to you are not incidental additions to your life, homeowner improvements to your standard of living. They are foundational words, words to build a life on. If you work these words into your life, you are like a smart carpenter who built his house on solid rock. Rain poured down, the river flooded, a tornado hit—but nothing moved that house. It was fixed to the rock.
 26-27"But if you just use my words in Bible studies and don't work them into your life, you are like a stupid carpenter who built his house on the sandy beach. When a storm rolled in and the waves came up, it collapsed like a house of cards."
 28-29When Jesus concluded his address, the crowd burst into applause. They had never heard teaching like this. It was apparent that he was living everything he was saying—quite a contrast to their religion teachers! This was the best teaching they had ever heard.

 http://www.biblegateway.com/passage/?search=matthew%205-7&version=MSG

Amen. May we be grateful!

Monday, June 18, 2012

My Melanoma Theology

The online Merriam-Webster Dictionary defines theology:
1: the study of religious faith, practice, and experience; especially : the study of God and of God's relation to the world
2a : a theological theory or system <Thomist theology> <a theology of atonement> b : a distinctive body of theological opinion <Catholic theology
3: a usually 4-year course of specialized religious training in a Roman Catholic major seminary

What follows is a look at my personal study of God in relation to my melanoma. Almost four years down this road I'm on, and will be on for the rest of my life, be it months or years. This is not reflective of where I was four years ago. I barely remember that person. And it is mine and mine alone. There will be readers who don't agree with me on much, if anything. There may even be some who vehemently disagree with me. There will be others who nod along a little or a lot. This isn't meant to provoke anyone, stir up arguments, give anyone ammunition against someone else, it isn't even meant to raise a chorus of "Amens!" It's simply offered as how God is moving in me and using what I give Him to work with, which is a 52 year old person with a lot more questions than answers and one who's constantly seeking to give this leg of my journey meaning. I'm the type of person that I have to do that. Not everyone is. Some people can go with the flow. My flow has to have purpose or I can't go with it. 

I don't believe God "gave" me melanoma in any way, shape, form, or fashion or semantics. I don't believe for a second that God "chose" me for this. I don't think this is God's "will" for me either. Or His "plan." Personally, I think He started out with a "plan" and I've gotten in the way of it so many times over the course of my 52 years that we're now on "Plan Triple Z." And because God is always light years ahead of me, He factored in all those times and my free will (which has been really "free-falling" at times) and has had to expend way too much time and energy getting me back on track. I think I'm only, just now, getting around to the original "Plan A."

Plan A, all along, has been a close and getting constantly closer walk with Him. Seeing God everywhere I look. Learning to hear His voice above all others. Trusting His wisdom even when it conflicts with my own "wisdom" and desires. That's Plan A. 

Plan A was born with a mole. God's Plan A included me listening to the mother, and also the father, and later the husband, but mainly the mother in my life. She was always the most constantly nagging voice about that mole, particularly in my teen years. And my twenties. Shoot, even my thirties and into my forties. I've learned now that I should have recognized God's voice in there from the beginning, but I didn't. God's Plan A for me, all along, was not to have melanoma. Melanoma was not God's will for me. God's will was for me to take my family history into account. God's will was for me to be obedient to my parents and have that mole removed. I was the one who said, "Leave me alone. It's just a mole for crying out loud! It's not going to kill me or anything!" That was my voice. God's voice sounded like Bettie saying, "It's going to give you trouble one day. Please get it removed so it won't."

The day I heard the voicemail from the doctor at Duke Urgent Care, where that mole was removed when I was 48, tell me I had melanoma and he had made me an appointment with an oncologist at Duke to see what we were dealing with, I didn't say "Why ME, God?" I've honestly never said that. I had all the ingredients for this recipe: I didn't follow God's directions on how to do this His way and made a really lousy "cake" as the sunburns as a teen, mole, and family history blended together in a really awful way. I understood the "why me?" On the other hand, and I don't know if this will make sense to anyone but me, I was surprised that "Carol Taylor" got melanoma. I thought I was special. I had watched that mole change dramatically and I had done a lot of praying about that mole while I hid it. I added "in Jesus' name" to those prayers as if that were a magical incantation that was supposed to assure an answered prayer and melanoma not be in that mole. I even went so far as to pray, many times over the course of a few months, that "OK Holy Spirit, You're here with me and we agree that there's no melanoma in this mole that's doing weird things. You promise where two or more are gathered and we're two and we're gathered...so...in Jesus' name, I claim no melanoma. Amen!"

I was guilty of piecing together Scripture, out of context, and making God promise what I wanted Him to promise. And He didn't. He's not obligated to keep promises that I make and attach His name to. He's obligated to keep His promises as He makes them and understands them. And I have learned, as I have witnessed and trusted, that He keeps the better promise. My ideas tank next to God's reality. The anchor holds.

I learned that God didn't suspend the Laws of Melanoma for me. He could have. But honestly, He suspended them for a few decades. He gave me every chance in the world to not get this and I made the choice and said "no" to removing the mole while I could BC...before cancer. Ironically I ended up having the mole removed anyway, along with a chunk of flesh that I would have kept had I done it when God and Mama, and God through Mama, first started bugging me. Not to mention that had I dealt with this on God's original timetable, I would have kept my 27 lymph nodes and not be living with lymphedema on top of stage 3b melanoma.

God's will all along, for me, had been no melanoma, but when I refused to listen, eventually God allowed it and didn't stop it. Instead, He opened the doors I needed opened to have it removed in the best available place that put me in the best system for me...the Duke system, where I've remained these close to four years. 

Plan A didn't include melanoma. Plan B incorporated it into my life because I ultimately, and unknowingly, rejected Plan A. And remember, this is just my growing understanding of my personal story. It's not meant to fit anyone but me.

God allowed this. He didn't cause it. He didn't give it to me. It wasn't His will or plan. But, and follow me here, when the plan changed and I didn't obey His will (getting the mole removed long ago), and melanoma became part of my life, and the plan now had to incorporate melanoma, His Will then became using this disease in a way that will bring me closer to Him and help me hear His voice clearer above other voices and trust His wisdom as I travel melanoma road. His Will became to use this to His glory and not allow melanoma the last word (as if it could ever have that anyway).

And, He's doing that. I can finally and confidently say I'm living into God's will and I'm definitely part of a plan and Plan Triple Z is circling back to Plan A. I've learned a lot about prayer and God's promises, with a lot left to learn. I am so that child looking through a mirror dimly. But the important thing is that I'm looking and growing. It's easy to get stuck and think we've got God figured out and we know "this" and we know "that." Been there! Still visit there!

I've learned I was so superficial, even as a person of faith and as a pastor, before melanoma. And I've learned that I am special. We all are. I'm so special that God decided to not suspend the Laws of Melanoma for me any longer than He already had, but while allowing melanoma to do whatever it will do in my particular body, He's going to open doors and He's going to redeem it, transform it, and use it to accomplish His will over melanoma. I know beyond a shadow of a doubt that this disease is serving a Godly purpose because God decided I'm special enough to use in such a way as to use it redemptively. 

And I'm good with that. We all have storms in life. Storms, by nature, aren't fun to be out in. Some can last rather long and be deadly. They can be damaging. That's their nature. But storms actually have a purpose in the natural order that God set in place. Forces of nature don't take notice of where humans have set up housekeeping. They do what they are designed to do and there are reasons for them. Earthquakes have purpose. So does fire. And while I, personally, don't understand "melanoma" to be from God's hand, it is a "storm" that can come into a life. While its purpose is to kill the body and bring as much chaos, pain, and damage as possible to a body, God can also use it to draw us closer to Him and find Him to be a faithful shelter in the storm. God can use it to increase our prayer life and draw us into His promises as they are and not as we may wish them to be.

Melanoma, as all storms, are temporary. We are vapors that are here today and gone tomorrow, grass that grows and withers, flowers that fade. Our mortal bodies are just that. Mortal. Melanoma makes that truth hit home like nothing else! Carol Taylor's body won't last here forever. That was part of the plan no matter what. Plan A makes allowances for our mortality because Plan A looks beyond this earthly body.

Sometimes we have to try on several "plans" before we circle back to Plan A. I always knew, theoretically, that I wouldn't be here forever. It wasn't until melanoma that I grasped that and actually applied that principle to me.

But I've also had hit home time and time again, that being a person of faith isn't about looking beyond this earthly present and doing nothing but longing for that heavenly home. That cheapens the journey. We're here for a reason and that's to point to God. And that's also a big part of Plan A that I'm beginning to truly understand as I never did BC. Melanoma has no reason to want to point to God, but a person of faith with melanoma does. It's not about me. It's about God's will being done in my life and that means every part of my life.

I have to see God using this. I have to look at this theologically. There will be people who can't bear to bring God into the picture because they can't associate Him with melanoma in any sense. I have to. I'm not always comfortable with where this takes me. I've stretched in ways I never thought I'd stretch and I'm not known for being pliable. I've gone so far out of my comfort zone that I'm not sure I even have a comfort zone anymore.

But that said, God has blessed the journey and I can't ask for anything more. And the journey goes on.

Gratefully so.

Saturday, June 16, 2012

An Effort to Help the Medical Community and Others Understand Us on Melanoma Road

It has been brought to my attention that we have a rather "specialized" vocabulary. We really do have a couple of cool words that fit into our world quite nicely and need to be known so they can be used appropriately. Likewise, there are also words, phrases, and attitudes that really need a quick demise.

Our really cool words:
Attirude. noun. A "don't mess with me" attitude that can come on suddenly, from out of nowhere. It can also stay around a while once it starts. Depending on the person, it can start a week or two before an appointment. Of any kind. It can start when we get thinking about our melanoma. It can just start without any apparent underlying reason or source. Melanoma is reason enough for a good case of attirude to start. When "attirude" hits, you know it. So does everybody else. It is what it is. (And, yes, that is how to spell it. No typo!)

Scanxiety. noun. A sense of dread that comes on the closer we get to scans. Scanxiety continues until results are in. Scanxiety looks similar to attirude, but it has a definite onset...scans and all things scans. Attirude is more of a general emotion that comes with the melanoma diagnosis.

I suppose of we can have "scanxiety" we can also be "scanxious". Cool! New word!

Words, Phrases, and Attitudes to Strike or, at least, redefine:
Doom and gloom. The medical establishment is often really good at projecting this undesirable attitude when discussing our melanoma with us. Other people can project it as well. This is more of an attitude and, frankly, we don't need it. We aren't stupid, but we aren't ready to die either, so spare us this idea that we're as good as dead. Give it to us straight but give us hope. Oh, and learn what's happening on the melanoma scene! We've had some extremely promising breakthroughs recently, and while they aren't cures, they do add splashes of bright colors to an otherwise darkish canvas. Get some newer statistics that reflect that people are living longer. Not everyone to be sure and sadly so. But advances in testing, procedures, surgeries, treatments, and knowledge about melanoma in general are prolonging lifespans, and not just with quantity of time, but high quality as well. People fighting this brutal disease don't need other people projecting doom and gloom, so cut it out.

Statistics. Our world abounds in statistics and we're all given an earful of them when we are diagnosed and as we progress along the staging ladder or outlive a stat. Statistics are presented to us as numbers, but these particular numbers represent real, live, breathing people. Us. Talk to us in terms of "people" not numbers. And give us "reverse statistics" please. When I was diagnosed stage 3b in July 2008, I was told it would "probably" spread to either my brain or lungs within ten years. OK, good to know. And it was "probably," not "definitely." A spark of hope there. But, I was also told that 30-35% of people in my predicament die within 5 years. That's how most of us are given our stats. That shook me. But as the dust settled and I got to thinking I realized that meant that 65-70% of people don't die within 5 years! Why couldn't my doctor have given me the reverse statistic?! He never mentioned that other 65-70%, which are a lot of people figures, not numerical figures!

In other words medical establishment and others, give it to us straight. We need honesty; and though we may not like what we hear, in order to fight wisely and well we need it given to us straight. But give it to us in a way that offers hope. Is that too much to ask?

Most in the medical community haven't had the word "melanoma" applied to their own lives and health. They don't know what it's like. Your patients will rise up and call you blessed if you talk to us as if we're living, breathing people who want to stay that way! We aren't numbers and while you think we need the statistics, and we probably do, give them to us in terms of being about people and give them to us in the reverse. Give them to us with hope.

Watch how you otherwise talk to us, also. We understand all surgeries and treatments carry risks and side effects. Please talk with us honestly, yet compassionately. Scaring the beegeezuz out of us and our families helps no one.

Train the people who answer your phones how to talk with us and understand what they are hearing. When we need an appointment, we NEED an appointment! When we say we have melanoma or have a changing mole or place on our body that needs checking, train them as to what that means and not to book us months down the road. Work us in that day or the next, but work us in and soon. And when we have tests, call us with the results asap. A week's wait is ridiculous in today's world. And, please show a little mercy when we call wanting a scan. Nobody wants a scan for the fun of it or for attention. We know the nature of melanoma and want to stay on top of it as best as possible. Help us. Understand and work with us. And when finances and/or insurance are a problem, please work with us anyway and instruct your facility's finance department to work with us and help us there as well. See us as more than a payment plan. See us as people who are in a place you really aren't and don't want to be.

Just tune your heart to us as people, not numbers. And remember what you learned in school and practice about melanoma. Then remember you only really know this in theory. Unless it has been applied to YOU, you really, really don't know what it's like. You may have seen enough to have a pretty good idea, but it's still just that. A pretty good idea.

Hopefully this is helpful.

If so, then I am grateful.

Friday, June 15, 2012

Melanoma Road IS Paved With...

Guilt.
This is a tough bump in our road. Depending on where we are and who we are, our guilt looks different in each of us. But it's there. Sometimes we voice it, sometimes we hide it, sometimes we try to ignore it in hopes that it will go away. And sometimes we have seasons when we don't feel guilty because we know deep down that we're all on our own journey and we can't trade places with anyone and we just try to stick together and do the best we can.

So what do we feel guilty about? If we're the one with melanoma we feel guilty about having melanoma. If only I had or hadn't.... I wish I could.... Our guilt rarely, if ever, revolves around ourselves per se, it revolves around how this affects our families. And we can't change it. Treatments affect stamina and health for many, the cancer affects our finances, we can't do the things we used to and want to. This can be particularly heart-wrenching when young children are in the home. Well, children of any age are affected as are parents and siblings. We can feel guilty for getting good reports when so many aren't. We can feel guilty for living when others are dying, especially if we're older. We can feel guilty for being NED (no evidence of disease) for a long stretch when others never have a time of NED. We can feel guilty for getting through treatment fairly easily when others are knocked down to the point of almost dying. We can feel guilty when we get better care than someone else because we have better access or better ways of financing it, be it insurance or ability to self-pay.

Our nearest and dearest can feel guilty because they can't take the pain away or take it for us. We don't have to die for them to suffer from "survivor's guilt." They can feel guilty if they are the ones who gave permission for a minor child to go to a tanning bed and now that child has melanoma. They bought the tanning industry's lie and can't turn back the clock and live the truth they now know and there is guilt that can accompany that. And to tell the truth, I understand it. I'm human enough to know I would feel guilty and wish I could take on my child's melanoma and wish I could change the past and not give permission to tan. None of us can change the past; forgive yourself, and move ahead with life and doing what you can to help your child and to help others not join you on this road with their own case of melanoma. We make mistakes and misjudgments, some are worse than others and some carry worse consequences and while we can't change them, God can redeem and transform them and use them. And, if we do die from melanoma, our survivors can feel guilty because it was "us" and not "them."

We all have our own lives, paths, journeys, walks, whatever you want to call it. We all have our own and we can't live somebody else's life. While "guilt" is a normal emotion and will rear its head from time to time, work through it and don't wallow in it.

Fear.
Once we get that diagnosis, fear becomes a constant companion. Besides death, the main fear is of recurrence. We know the nature of this disease. We know better than to trust any stage or any status or any treatment or any length of NED.  We never know what will happen when, but we know what can. Fear is one of our biggest enemies for it can sap us of hope and energy, it can bring on depression, it can become our focus. Fear can, likewise, be a huge motivator. When we can harness our fears and channel that energy into moving ahead and being a force to be reckoned with, when we can find a way to rule our fears instead of our fears ruling us, then we can diminish that which seeks to diminish us. Fear, like guilt, has to be put in its place. And that is easier said than done. I know. But find a way to work through it. Fear isn't a friend. Guilt isn't a friend. And neither is...

Worry.
We get told in Scripture that worrying isn't good. I like how The Message words Matthew 6: 24-34:
        "You can't worship two gods at once. Loving one god, you'll end up hating the other. Adoration of one feeds contempt for the other. You can't worship God and Money both.
        "If you decide for God, living a life of God-worship, it follows that you don't fuss about what's on the table at mealtimes or whether the clothes in your closet are in fashion. There is far more to your life than the food you put in your stomach, more to your outer appearance than the clothes you hang on your body. Look at the birds, free and unfettered, not tied down to a job description, careless in the care of God. And you count far more to him than birds.
        "Has anyone by fussing in front of the mirror ever gotten taller by so much as an inch? All this time and money wasted on fashion—do you think it makes that much difference? Instead of looking at the fashions, walk out into the fields and look at the wildflowers. They never primp or shop, but have you ever seen color and design quite like it? The ten best-dressed men and women in the country look shabby alongside them.
        "If God gives such attention to the appearance of wildflowers—most of which are never even seen—don't you think he'll attend to you, take pride in you, do his best for you? What I'm trying to do here is to get you to relax, to not be so preoccupied with getting, so you can respond to God's giving. People who don't know God and the way he works fuss over these things, but you know both God and how he works. Steep your life in God-reality, God-initiative, God-provisions. Don't worry about missing out. You'll find all your everyday human concerns will be met.
           "Give your entire attention to what God is doing right now, and don't get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes."

Somehow, that just doesn't need any help from me. Put your worries in their proper place by following Jesus' advice. A person doesn't have to be Christian to do that either. 

Special Wishes That Can't Come True.
Tied into all of the above are those special things we wish we could do but can't. I wish I could step in and take the pain friends feel as they walk this road with their children. Even if but for a day, I wish I could carry this for them and I can't. We wish we could stop this from affecting our families like it does and we can't. Not even for a day. We can't trade places with anyone. We can't say "Calgon take me away" and make Calgon obedient. And wishing for a V-8 doesn't work any better. We have to learn how to suck some things up because a big part of this is...

Having To Acknowledge How The World Works. 
Rats. I don't like having to acknowledge how the world really works. I just don't. I wish I could rewrite the owner's manual and set things up like I want them. (See the paragraph right above this one). It is what it is. The world and the laws of nature and DNA are what they are. Melanoma is what it is and it has its own nature and it refuses to bow and yield to my preferences. I have to acknowledge that. I don't have to like it though and I don't have to understand all those laws. But I do have to live with them.

Part of the way the world works is God designed each of us with our own unique DNA and bodily systems and while there are similarities, there are also unique differences. Even within families. And we all know that, but it really hits home when a disease like melanoma, or any cancer, hits a life. So as we acknowledge how the world works and see things we don't like and can't change, we are reminded that God is also at work for He shows up and reveals Himself in various ways.

Faith
Though faith can get seriously challenged, it can also be seriously strengthened and bolstered. We witness God at work in ways we possibly never fathomed before and learn more of how He sees life, our lifespans, time, and "need." We can get a grasp of the idea that we need a faith foundation that is solid like rock and on Rock and we may really need to do major repair work and haul away the sand of our lives. As our faith eyes are opened, we see God revealed in ways and places and people we could never have imagined BC...before cancer. And we see God working not only in us but through us and realize we are part of something bigger than we ever could have dreamed. We begin to understand that while we may have to acknowledge how the world works, God doesn't. He created it and set those laws into motion and He has the freedom and authority and power to step in and work His will His way anytime He wants to. We call those events "miracles." God calls them "business as usual" for miracles abound. Sometimes we need the eyes that are part of the cancer package to see them clearer and appreciate them more.

Hope
Along with faith, we must have hope. Not everyone on Melanoma Road has what they would call a "faith walk" or a belief in God, but we all agree "hope" is essential to get through this. Hope for another 5 minutes, maybe even another day. Hope for no recurrence. Hope the treatment works and buys more time and maybe even kicks mel to the curb. Hope to get in that trial. Hope for a cure. Hope it doesn't take another branch off the family tree. What we hope for is always a future event, for we hope in that which we cannot see and are taking on faith is really there. Somewhere it's there. And someday we'll find it. Maybe not today or tomorrow. But someday what we hope for will come true. We have that hope. And we must keep that hope alive. It is what gives us strength. It is what keeps our eyes focused on God and what He's doing. If we can't place our faith and hope in God, then where can we place it?

Support
OK, many place hope and faith in their support systems if they don't have a personal faith walk with God. All of us, know the importance and value of having people to support us, and, THEY need support as well! We who have melanoma need to make sure that our support systems have their own support system! People who know us, love us, tolerate us on our bad days, let us cry or be moody or be by ourselves, who take the brunt of our emotions and cater our pity parties and also know when (and how) to tell us party time is over and it's time to clean up and move on. People who pray with and for us. People who will be honest with us and can bear us being honest with them. There are things we have to talk about. Last wishes. Final plans. Arrangements. Death. Where the checkbook is, what passwords are, where important papers are, what Heaven must be like. Are you going to be OK? You will be OK. Our instructions on how we want you to carry on and live when we are no longer here to tell you. Obviously, it's not easy being a true support system. But it is done and done well because, there is...

Love
When all is said and done, love carries the day. And love will, and can, shoulder much. Love is pretty strong stuff. Where would any of us be without it? Love of others? Love for others? Love for God? Love of God. It is what holds us together and makes the world go 'round. And when this life ends, Love carries us Home. Love saw us each into this world. Love created us. Love sustains us. And Love will never end. Nothing is quite the teacher of God's love and provision like melanoma or other cancer. I'm sure people who are challenged by other types of diseases and turmoils can say the same thing. It often takes a real life-shaking, life-threatening occurrence to bring us face -to-face with the Living God in a way we've never encountered Him before and we find He is not Who we grew up thinking He is. He is more. And we aren't who we thought we were either. We are more. And even on...maybe because of...maybe despite...this journey, we find...

Blessing.
And as we are blessed we are empowered, by God, to be a blessing and reveal Him in this life assured of life with Him, forever, in the next. As a friend has said, "I just love the way He works through people. In revealing the faces of melanoma, He reveals his Face too. So we reveal the faces and in doing that, we reveal HIM, and he reveals Himself to US. Its like getting a glimpse into a window."

God takes what melanoma meant to be a curse, blesses it, breaks its power in our lives, redeems this walk, blesses it again and again, transforms it, and uses it to be a blessing.

Melanoma Road is paved with many things. But the people we encounter on the road are among our biggest blessings, whom we love, are supported by, share a common hope with, are bound by faith to. The rest of the pavement, well, it's where "pavement" belongs...under our feet.

May God bless the journey. Wherever it leads.

And I am grateful that He does. Amen and Amen!