Saturday, September 13, 2014

Catching Up

It has been a while since my last post. Sorry. But I do want to let folks know I'm fine and still here! I'm truly living in one of those blessed seasons right now. Life is good. Family is good. Church is good. Health is good. I can honestly say I have no complaints. Nothing worth mentioning, anyway.

So let me catch you up on the best of the best in my world! In my family world, both my parents are in good shape for the shape they're in. Daddy is 84 now and Mama is right behind him and will turn 84 in November. They celebrated 58 years of wedded bliss and every other emotion that comes with 58 years of being married to someone in June. I think they'll make it! My brother and his two sons are all doing well and thriving where they are each planted. My husband is doing well, so is the drugstore and we'll celebrate 35 years of wedded bliss and everything else in November. Our two children are thriving and so is our son-in-law. And our two grandchildren are the reasons the sun rises and sets like clock-work. Our granddaughter began Pre-K 4 in August (where has the time gone?!) and our grandson is taking his first steps...watch out world! He's coming! My church is thriving and growing in missions! We recently helped send a youth to El Salvador on his first mission trip, AND we are sending a young woman from El Salvador to college so she can earn her teaching certificate and fulfill her dream of opening her own school to teach English and Spanish! I'm so proud of everyone in my life I could bust!

In my melaworld things are also happening! The FDA fast-tracked approval of Merck's PD-1 inhibitor, Keytruda! That opens a much needed door for so many! Yes, it still has rather rough stats like all our treatments so far, BUT!, the stats aren't as rough as some. It will be a life-saver and game-changer for so many who, right now, NEED a life-saver and game-changer! We're excited! Plus it opens the doors for other such drugs to go ahead and be released. Now if we can just get the prices down!

Also big news is the Melanoma Research Foundation is, RIGHT NOW as I type, sponsoring the first-ever Pediatric Melanoma Summit! And the timing could not be more perfect as September is Childhood Cancer Awareness Month. Many of my Facebook friends and their children are there right now and I cannot wait for their pictures and videos to start being shared! I hate there's a need for this, but I am so grateful that since there IS a need, that MRF has responded and is stepping up to meet that need.

So, as I catch you up and share my season of blessedness, I encourage you to look for the blessings in your life. They are there. Promise. And protect the children in your life. I would be remiss if, during this month, I didn't remind you that every day in the USA alone FIFTY children will be told they have some type of cancer. FIFTY families will find their world rocked and turned upside down. EVERY SINGLE DAY. JUST IN THE USA ALONE! Put sunscreen on them, every day. Watch their diet. Make sure they exercise and get fresh air. Don't smoke around them. Spend time with them. Love on them. None of us have any guarantees, not even our youngest. Make sure they know God.

God knows them!

Sure each day has a stumbling block or two . That's life. Nothing is perfect. Not even my season of blessedness. It's not perfect, but it sure is good. And I'll take that. The stumbling blocks are manageable for now. I know that can change in the blink of an eye and catch me unaware. That's life as well. And I'll deal with the changing of the seasons when it happens. God is in the changing seasons and nothing that comes my way will catch Him unaware for He never blinks.

He has proven Himself faithful and trustworthy in the past and I have no doubt He will always prove Himself faithful and trustworthy! I can handle THAT, too!

So, I'll handle what I can and trust God to handle the rest and to handle me as I handle what I can...or try to handle what I think I can!

Right now I am thankful for this season I'm in. God's got it.

What more can I ask?

charis!

Saturday, July 19, 2014

melanoma horror stories

I'm not going to write the blog post that searcher may have wanted. Horror stories abound, to be sure. From misdiagnoses, to doctors not listening to us, to this disease finally being caught only to have spiraled to places unforeseen, to the manifesting of black tumors spreading like wildfire, to financial loses, loses of support, family unraveling, you name it.

But you know what? Found inside each of those "horror stories," are stories of real hope. Perseverance. Faith. Keeping on keeping on. Prayers for getting through the moment and for a better tomorrow. Stories of riding out the storm even when that ride turns into a run through Heaven's Gates of Praise and into the arms of Jesus.

You will find what you look for on Melanoma Road. If you want horror stories they are there and they'll pull you down and scare you to pieces. Frankly, too many good things are happening on our road for that attitude. For the first time ever, we have treatments and trials that are knocking melanoma back for some and down for others. We still don't have that magic bullet that produces a "cure" but we'll take what we have and know more is coming down the pike. We're on the way to cures at best and making melanoma a chronic, manageable disease at worst. And right now, that "worst" is really good. For many.

Yes, 178 will die today, around God's world, from melanoma. NO, I will never downplay that fact. No matter what day you may read this, that stat will stand. For now. One day it will start to decrease. But for a while it will probably increase as past behaviors catch up with us. But keep in mind that behind that stat are real people with real families who are hurting with a hurt they've never known before. They are living the horror.

And many are also mixing that horror with deep faith. They've seen horror, and they've also witnessed and been blessed by miracle after miracle on their journey. They've seen God provide at just the right time and with just what was truly needed. They haven't gotten the miraculous healing they so desperately wanted and prayed for. But they've gotten blessings beyond belief. They know the healing is coming and it will be for all time. And while there is deep sorrow and grief, mingled with many tears, all of that is held in a tender tension of knowing they are held by God and He will not, ever, let them go. Even as one is ushered into Heaven and others are left behind...God will be with each child. HE will never leave them or forsake them. He will make a way when there appears to be no way. He will change the horror of the moment into the joy of eternity.

But this is never an easy tension. Yes, melanoma horror stories abound.

However, I want to leave you with this set of videos. Oh yeah, you'll see the horror as Eric's disease progresses. But watch his shirt in some of them. It says, "Jesus Loves Me." Listen as he talks of faith and prayers. Eric died in early August 2011, before some of our newer treatment options. OH, but what he taught! Today, many still teach these same lessons, but in their own way. They know the horror. They tell of the horror. They share the horror. But they do it so, as Eric says in one, so others know what to expect. And they share so we'll understand. And they share so we see how they live with the tension of what is happening and what is happening in realms where they cannot see. Yet. They share for many reasons, but I have yet to come across someone who shares this leg of their journey so we'll see nothing but horror. They want us to see beyond that, more than that.

For those who have gone before me, like Eric, I cannot, I will not choose to focus on the horror. They deserve far better than that. They did not focus on the horror, even when they living in the belly of it. They chose to focus on the Lord and His unending, faithful love and provision.

I can do no less.

If you want horror stories...look elsewhere.

charis

Wednesday, July 9, 2014

Be Your Own Best Advocate When It Comes To Your Health

In various blog posts I've hit on the fact that we are our own best advocates, in Melaland, when it comes to anything associated with our health. Feel free to do a blog site search. It's time to bring those ideas together under one roof. And while this is written with "melanoma" in mind, because that's what I know, this applies to other cancers and life-threatening diseases as well.

Many of us have wonderful support systems to help advocate for us. But I've also been around long enough to know that many of us do not have good support systems. Whether you do, or don't, have someone who will make those calls, push for what you need, or go to bat for you when you simply cannot pick up the bat for yourself, there are things you need to be prepared to do if, and when, the time comes.

As a dear melahomey says, "No one wants me to live as much as I do!"

That said, and agreed with, remember: this is your life, your battle, and at the end of your days it will be your death whether you die from melanoma or from some other cause. There are things you need to know.

One. You need a melanoma specialist! That is crucial, no matter what your initial stage, as you live with melanoma at your table. While a melanoma diagnosis is no longer an automatic death sentence, many do die from it every year...and, we need to understand that having a melanoma specialist in our corner gives us the very best opportunity of living while we manage this disease. Many will do well with their melanoma and many will manage their disease. Give yourself every fighting chance. Be in the best care possible. I know people who fly across country to see their melanoma specialist. Others go out of state. I travel over two hours, each way, to see mine at Duke (I see a melanoma specialist surgical oncologist, but a mel spec onc has my records, and we've met, in case I ever need her).

Even if you are in the lower stages, I still advise seeing one. Be prepared to have a tough time getting that first appointment, though, if you are of a lower stage. But push. Be that squeaky wheel that gets the grease. Tell them you want your records seen, that you need peace of mind and to know you're doing everything you can do. Then take your records and get that second opinion. Make sure you were staged correctly. I've seen melanoma specialists change the original stage...I've seen it go down and I've seen it go up. Get your records in the hands of the best just in case you ever need him or her. This is Aim at Melanoma's link to melanoma specialists in the USA and Canada. Where you find them you'll also find surgical oncs who are mel specs and you'll find dermatologists who make melanoma and skin cancer the focus of their practice. If you are outside the USA and Canada, go online and find the melanoma organization in your country. They can help you.

Often people don't realize that there are melanoma specialists! They think any ol' oncologist will do. Or they think an oncologist who specializes in another cancer is OK. Well. No. You need a doctor who knows melanoma, who knows what's going on in the field, who can get you into the right trial for you...shoot...you need a doc who KNOWS about the current, and best, melanoma trials. I'll be painfully honest. I've lost good melahomies because they refused to see a melanoma specialist. They liked their onc. They trusted their onc. Their onc was a general onc who, even if my melahomies didn't know they needed a specialist, the ONC knew they needed a specialist. And those oncs knew they were not mel specs.

If you have melanoma, see a specialist.

And, even then, know what's going on in the world of melanoma trials yourself. Be able to discuss the possibility of participating in a trial. Know the latest and know the greatest. Yes, your melanoma specialist will know of the top ones, but that doesn't mean he or she will know of ALL the trials that YOU might be interested in. Some people want to get in on the ground floor of brand new trials. Some want to get in more established ones. Some people are willing to travel if they meet the criteria and others aren't. Here's the go-to site for finding a trial.

The medical world isn't the only place you need to be prepared to advocate for yourself in. There's also the insurance world. Some people breeze right on through and everything the doctor orders get approved with no problem whatsoever. All the time. Rarely though will everything be happily approved forever and a day. Even the luckiest melahomey in insurance world, eventually ends up having to push for something. Some people have to push for everything, and I do mean EVERYTHING. It will vary as to insurance plans, Medicare or Medicaid.

If you have to go to bat for yourself, suit up and go. But also know that you've got a team behind you that you can use. Your nurse is a line of defense who can go to bat for you. The hospital will have someone on staff who is used to haggling with insurance companies and they are there for you. Use these valuable resources.

A lot of us have to muster our courage and grow a spine when we get a melanoma diagnosis. Rarely will everything you want or need be handed to you on a silver platter from day one. That's just the way it is. Remember: this isn't their life, their melanoma, their battle, and it won't be their death. It will be yours. Do what you need to do to live your life the absolute best way possible for your particular circumstances and health.

Be your own best advocate. And when you just don't have it in you, have at least one other person in your life that you can trust to advocate for you and see that you get what you need. But it starts with YOU!

You are worth it.

You matter and your life and battle matter.

If you are a person of faith, pray. Stay connected to God and listen to His leading. Not everyone on this road is a person of faith, but everyone has value, worth, meaning, and purpose. So...

be prepared, and understand what you are willing to do and what you are not willing to do as you face this disease. And don't settle for less.

We don't get do-overs.

charis

Monday, July 7, 2014

how long to die from melanoma, Or, That Sure Ain't "Pretoria Mama with Big Booty"


But that's how it goes when you're me. My melahomey, Donna Regen, is currently basking in the fact that Google is having fun sending very unsuspecting searchers to her blog. They plug in search terms like "Sweety Mama for sex in Pretoria" and "Pretoria Mama with Big Booty" and they get HER! They plug in stuff like "how long to die from melanoma" and get ME!

Unfortunately, a lot of people plug in similar search terms, probably after they receive their very own melanoma diagnosis, and find me. It's a natural fit, I suppose. But this gives me an opportunity to shout something from the mountain tops. Please hear me:

A MELANOMA DIAGNOSIS, AT ANY STAGE, IS NOT AN AUTOMATIC DEATH SENTENCE!!

It is scary. It does throw you into the great unknown. It is a deadly, horrible cancer...no cancers are "good" but some are more treatable than others right now.

Instead of preparing to die, prepare to LIVE! Live your once-in-a-lifetime life to the fullest. Yes, you've faced your mortality...but you're here to keep looking it in the eye. Don't blink. Live. 

I know the statistics. I know the rates of diagnosis for melanoma are on a dramatic rise and will continue to rise, until they level off and then begin to decrease. I know the numbers of deaths from melanoma are also rising. But please keep things in perspective and find hope and not imminent death.

Over 139,000 people, in the USA alone, will be diagnosed with melanoma this year and that's including in situ (stage 0). Of those, 76,100 cases will be invasive. Over 9700 will die from melanoma this year. Though all numbers are on the rise, the number of deaths has, historically, lagged behind the number of those diagnosed. Most people, either through surgery, or various treatments, or both, will manage their melanoma. Most people will die from something else and not from melanoma. We will never know until we live out our days, but please stop assuming that if you have melanoma you'll, inevitably, die from it.

As my melanoma specialist surgical oncologist from Duke told me last year, "Most people do well with their melanoma. Now we have to find out why that is. Why some do well and others don't do well."
                                                 
I know and understand the urge to get online and find out all we can about this disease, or any disease we're diagnosed with. But we run the very real risk of getting bogus information and a lot of scary stories. When it comes to melanoma, go to trusted sites like Aim at Melanoma and Melanoma Research Foundation. There are some others, but this will get you started on the right path.

Even then, understand that the statistics you'll see aren't new and don't reflect what's happening in Melaland. As I write, there are some very good trials going on that are helping my fellow melahomies tremendously. Yervoy has been approved by the FDA, which, by itself has given many a new lease on life. When combined with trial drugs, it is even more potent. For many. Not every trial drug or approved treatment is working for everyone. Not everyone who has Gamma Knife or Whole Brain Radiation (WBR) will be helped. More and more information is constantly being learned about the role of genetics in melanoma, and in other cancers, and research is coming up with new treatments and many are reaping the rewards of that research (and, yes, there is overlapping between genetics and the promising trials...I'm just trying to spell things out without getting too technical for the newbie). 

And, it's because not everything helps everyone that horror stories abound, even today. But again, keep things in perspective. For every horror story, there are many, many more people living positive life-stories that bring hope. Even with stage 4 melanoma.

I don't want anyone to think that I'm downplaying the reality of melanoma. I'm not. I don't want anyone to think I'm trying to diminish those who have valiantly fought this disease and died from it. I'm not. I don't want anyone to think I diminish the battle of those who are, right now stage 4 and fighting HARD to live. I'm not.

But I DO want to say that there are many who are stage 4, have been stage 4 for close to 10 years or even longer, and are doing well with their melanoma. They love, they live, they work. They are a fabulous source of hope in this world where we, often, don't think in terms of "doing well at stage 4." Same with people who are stage 3c. They have been 3c for a long while and are doing well with their melanoma. I'm stage 3b and have been since 2008. I'm doing well with my melanoma. So far. I know the score and I know this disease.

And that's what I'm trying to say. Don't think in terms of dying from melanoma. Know that can happen, and then do everything in your power to prevent that from happening. Stay proactive with your health. Make all the dietary changes you need to make to eat healthier. Exercise. Get all changes inside, and outside, your body checked out. Be your own best advocate. Change doctors if you need to. Be sure to be in the hands of doctors who have YOUR best interests at heart and who listen to you. When it comes to melanoma, be in the hands of a melanoma specialist...that is imperative! This is Aim at Melanoma's list of melanoma specialist oncologists. Where you find them you'll also find surgical oncologists who are melanoma specialists and dermatologists who make melanoma and skin cancer the focus of their practice.

Give yourself every fighting chance possible. And maybe, just maybe your fight won't be much of a physical battle. The emotional battle will be there as this disease does work on our emotions because we never know what it will do until it does it...or doesn't do it. And if your battle DOES become physically intensive, know that there is help. There is real hope and real promise. You may just fall into the number who can manage their disease even if it means going from one treatment to another and throwing in surgeries and various radiation methods. Don't assume the worse until the worse happens...if it ever does. And all along the way, know there's support available. You don't have to live with this diagnosis alone. There's a wonderful, highly supportive melanoma community thriving on Facebook. Look me up and I'll plug you in.

Yes, you'll meet many who are in the fight of their lives for their lives. But they will inspire and encourage you. You'll learn many are fighting after a season of doing well with their melanoma. You'll meet many who are stage 4 and managing their melanoma. They're living with this disease and not dying from it. And they've been living and managing for quite a while now. They, too, will inspire and encourage you. You'll meet many all along the staging spectrum. You'll meet many who have just been diagnosed, and they'll be at every stage possible as many are diagnosed even at stage 4, not all are at the lower stages upon diagnosis. And you'll run into fear and panic. I've been there. I understand. We all do. But we also understand you have to have hope. Hope and faith are vital. Just as vital as having a melanoma specialist. If you have no hope then all the specialists in the world won't do you any good. 

Cling to hope, not fear.

Live your life not your death.

Make plans for a future not a funeral.

Know the score and know scores change.

Understand statistics and throw them away.

You are not a number. You are not a "case." You are a valuable human being and there's more to you than melanoma or any other cancer.

Don't let any disease seek to diminish you. YOU seek to diminish the disease.

And, don't think in terms of how long you have before you possibly die from melanoma, think in terms of how long you will live even though melanoma has a seat at your table.

And then live.

charis

Wednesday, July 2, 2014

Humor In Melaland

And, boy, are we a funny lot, indeed! Sometimes we can forget and sometimes others don't know. We can, and do, develop a dark humor. We laugh at doctor/hospital jokes. Heck, we LIVE them! We learn that the old adage, "might as well laugh instead of cry" often is a really good policy for dealing with all the junk we have to deal with.

I write a lot about our trials and attirude (which can be hilarious in hindsight). I write a lot trying to lift us up, remind us God is in our midst, and to hold out hope. Today, I'm feeling the need to remind us to laugh. It really is great medicine...and it's FREE! We don't have to haggle with insurance companies to get it! It really does lighten our souls and it makes us pleasant to be around. Life truly does have it's funny moments. Enjoy them! Don't let this disease, or any disease, strip away joy, your smile, your hearty laughter. And I advise that knowing that can be a hard place to get to after this diagnosis or after a death of a loved one from melanoma. I've been there.

I've been thinking about this post since yesterday...the day after Monday...the day after this blog post hit the greater Internet: Donna Regen's Melanoma Mama: Sweety Mama for Sex in Pretoria.

When I saw that I literally bust out laughing! (In the rural south where I live, we do not "burst" out laughing. WE "bust" out). I'll tell you why that's so funny. It's because this is the PSA Donna's known for: it's about her daughter, Jaime, who died from melanoma. Donna's known for her work in Melaland doing what she can so that no other parent visits their child in a cemetery because of melanoma. She's simply not known for being any other kind of "Mama." She's "Jaime's Mama," not "Sweety Mama!"

I choose to see that as God's sense of humor shining through. That "sweety mama for sex in Pretoria" was an actual search term that, for some really unsuspecting person, prompted Google to suggest one of Donna's posts. ALL of her posts touch on "melanoma" in some way. Not "sex." Not "Pretoria." Melanoma. She certainly doesn't bill herself as "Sweety Mama." And yet, Google decided Donna fit this. I have to laugh! Donna laughed. God laughed. Hopefully her reader learned. For some reason, God led that person to Donna.

We've got other humor in melaland that I'm thinking about. They've shared this photo often on Facebook ever since they took it last year at the Aim at Melanoma Walk in Charlotte, NC. Mark Williams and Rich McDonald (Hotel Melanoma proprietor), our Men in Black.

We enjoy life. We don't enjoy all aspects. We don't enjoy this disease and all that comes with it. We don't enjoy knowing that everyday 178 people, around the world, die from melanoma and countless more are added to our numbers. There is much we do not and cannot laugh at or about.

But we are human. And we've learned life is a gift. Everyday is a gift. We've learned to smile and keep going. We've learned that if WE can laugh, then what in the world is there to keep others from joining us in it? We've learned life is short. Even if we live to see 100 years, that's still "short."

So, receive the blessing of this day. Rejoice and be glad in it for it will not come again. Make the best of it and the most of it. Live it so that at the end of the day, when you lay your head down, you can say "Thank You, God, for seeing me through today in the best possible way considering all today held."

And, "Don't stop believin'!" Never, ever stop believin'!

charis

Tuesday, June 24, 2014

afraid of melanoma stats

HELLO! Show of hands for all who can identify, or who could identify at one time...maybe when your melanoma diagnosis was still fairly new.

That term led someone to this blog and I hope they found what they were looking for. This topic needs to be addressed for those who have received this diagnosis. Yes, the stat for a melanoma diagnosis is on the rise, worldwide. Yes, the stat for dying from melanoma is, likewise, rising. This is one of the few cancers that can say that. This post isn't about the stats as they apply to a possible melanoma diagnosis. This post is for those who have received that diagnosis and a dose of stats to go along with it...or who consult the Internet Statistician (which is a really, really baaaaaad idea!)

We all get them. Some of us get more than others, depending on the doctor. When we are diagnosed and given our stage, we are told our chances of recurrence. Some people are told their chances of dying. No matter what course of treatment we decide on, we may be given stats for it working or not. Those stats can be thrown out the window if and when our stage changes...which it can only go up from where it began. We can look online and find stats for our ethnicity, gender, age, country, and we can zero in from there and get stats for our state or region. Stats for our hair color and food preferences. Stats for how many sunburns we've had or if we've used a tanning bed. You name it and there are stats for it as it's related to melanoma. We can get overwhelmed and drown in a sea of figures. We can get downright scared to death!

First: stats change and many of the ones you'll find are outdated. Particularly those surrounding your chance of recurrence and the chances of dying, at your stage, in a given time-frame. Those are going down, somewhat. Many of the available stats came out before the treatments we have now...some FDA approved and others that are in trial but showing tremendous promise for many. That all illusive cure, or cures as it will probably take more than one to "cure" all melahomies since melanoma is such an individualistic cancer, WILL happen and we're getting closer all the time.

Second: yes, all the stats you will see reflect real people with real stories. BUT, remember, there are two sides to every stat! For some reason, we are usually given the stat that reflects our chances of recurrence or of dying...and not the stat that reflects our chances of NOT having a recurrence at the stage we currently are, or our chances of NOT dying within a particular time-frame.

For example. When I was diagnosed stage 3b in July 2008, I was given this stat by my melanoma specialist surgical oncologist at Duke: I had a 30-35% chance that melanoma would return in either my brain or lungs within ten years. Note: my melanoma mole was removed from my upper left arm, hence the brain or lungs as the places a recurrence was likely to occur.

A THIRTY to THIRTY-FIVE percent chance?! Oh my! Did I quake in my shoes? Yes, indeed I did! Did my heart know fear and my ears burn at those words? Yes, indeed that happened! Did I look for melanoma behind every rock and mole? Oh yeah.

But you know what? I dawned on me that if I had a 30-35 % chance of recurrence within 10 years, then that ALSO meant that I had a 65-70% chance that it would NOT recur within ten years! Why, oh why, had the doctor not told me THAT?! Real people with real stories make up THAT stat, too! MOST people at stage 3b do well with their melanoma and when we really take THAT kind of look at the stats...most people of ANY stage do well with their melanoma. Even people with stage 4 melanoma are doing better and better all the time...many are. And I am not diminishing the battle of those who are in the fight of their lives for their lives...or of those who are entering into Hospice having exhausted all the options we now have and nothing worked for them. There are people who were diagnosed 3b when I was, who did not do well with their melanoma, and have run their race through Heaven's Gates of Praise. We are still in a place, in melaland, where not everything works for everybody, unfortunately. Remember, real people make up both sides of all stats. We're praying and working to change those numbers so the number of those who do well, at any stage, continues to go up until everyone does well and there are cures.

Have a healthy regard for the stats. Know your stats. But know both sides of your stat and have HOPE!

I'm almost six years now into that ten year stat I was given in 2008. I haven't had any recurrence and since I've passed that five year milestone, I don't live in constant fear and dread anymore. Oh, I know the score. I know it CAN happen. But that doesn't mean that it WILL happen.

So. What am I doing? I'm living my life the way I want to. Quietly and simply. I enjoy my family and adore the two cutest grandchildren God has put on the planet and He put them in my life! I'm active in my church...better be since I'm the pastor! I live the small town life in a truly small town and wouldn't have it any other way. I'm active in the online melanoma community and do my best to give hope and comfort, both as needed. But I'll also give a swift kick in the cyberpants when it's warranted. I blog. I participate in an Aim at Melanoma walk each year. In the past, I've gone to Charlotte, NC. This year I went to Chesapeake, VA.

Stats are a part of life. They are out there in abundance whether you have melanoma or not. Be smart when you encounter them. They are numbers. They are not YOU. You reside inside every stat, somewhere, that's true enough. I'm somewhere in stats about cheesecake and coffee. Tofu and cauliflower (neither of which I like or eat, but there are stats about them, so I'm on one side or the other of each stat that exists). You get my point. Stats are part of our culture and coming up with them keeps people employed.

They represent real people with real stories. They're there. Acknowledge them. Know the ones that you need to know. And lay them aside.

Here's a stat that holds for everyone: You get ONE life. You get ONE death and you WILL die at some point. All of that is 100% accurate. Don't let outdated stats prevent you from living your God-given life. Be smart, be proactive. Take care of yourself. If a recurrence happens, it happens and NOT because of a statistic! Deal with it when and if it happens. I haven't lived six years waiting for the other shoe to drop. Chances are in my favor that it won't happen.

Will my stat change if I make another four years without a recurrence? Sure it will. And I'll live being on one side or the other and I'll still know the score. I'm far from ignorant about melanoma.

But no number is going to rule my life. It's just not. I refuse to give a number that kind of power. I choose to give THAT power to God.

charis

Saturday, June 21, 2014

A SUN Addict? Who ME?

Well. Yes. According to the latest thing being studied, mice and I just may have something in common. More than a love of peanut butter and a like of cheese, we may also have the capacity to be addicted to the sun!

I'll be 55 years old in September. I haven't sunned in a mighty long time. Hush and don't do the math. But, back when I was younger, starting when I was around 12 and on until I was around 16, I dearly loved, LOVED I tell you, grabbing my towel, the bottle of Johnson's Baby Oil, and going out in the back yard, or to the pool which was conveniently across the street from my house, and laying out. And falling asleep in the nice warm sun. And don't forget when my family went to Myrtle Beach for vacation every August. Laying out was a great way to meet beach bums! That's how I got my sunburns...and when I got my sunburns...that fired up and bit me in the form of melanoma when I was 48.

I truly did stop laying out before I graduated from high school. My maternal granddaddy had had many melanoma and skin cancers removed. He was a sawmill man and practically lived outdoors all his life. Somewhere around that time I heard family members talking about his melanomas and associating them with him being out in the sun. I really had no clue what "melanoma" really was all about, but I knew it was "cancer" and I knew that if he had it, I could get it and I knew I didn't want anything to do with any kind of cancer. So I stopped laying out. Whew. I sure thought I'd dodged that bullet!

I had no idea that I'd already done eternal damage to my skin, that my skin would never forget those burns...isn't it funny what we remember? I remember the good times associated with laying out, my skin, on the other hand, remembered I cooked it...and I certainly had no idea my skin would never forgive me. And I've been mighty good to my skin since those tanning years. Rats. Skin does not forgive. At all. 

I had no idea I may have been addicted to the sun. It felt good to lay out. It felt good to fall asleep in it. It felt good to feel good out there. It felt good to get a nice tan. See, I usually tanned. I didn't get as deeply browned as some people, but I rarely burned and I did get a nice color. I'm brunette and my skin tone has pinkish undertones, so my skin was enhanced, shall we say, by my time in the sun.

Here's a link to the recent study as it pertains to SUNtanning.

It's hard to believe that it's been so long ago (three years!) but before there was this study on the sun being addictive, there was a study on tanning beds being addictive. I have friends in the melanoma community who were tanners and who readily admit they were addicted.

For the life of me, I will never understand how those things have risen in popularity as they have. We call them tanning coffins. I don't care if David Cassidy had been in one waiting for me to join him, there's no way on God's green earth that I would ever have gotten in one and pulled the lid down over me. I'm far too claustrophobic for that. Even a bottom layer of cheese cake and the lid drizzling caramel and hot fudge on top of me when the lid was closed would never have gotten me into one. But people, too many...one is too many...get in them everyday. No David Cassidy. No cheesecake. Just those blasted UV lights that can be addicting...

And I get it. I understand. I didn't until this study about suntanning came out. Tanning, of any kind, can be addicting. It can feel soooooooo good. It can be a mood elevator. And despite what we know about tanned skin being damaged skin and despite the skin cancer warnings from reformed tanners like me, people still engage in those behaviors because they've "got to have it."

And I understand now why we're having such a difficult time getting through to so many about the need to stop tanning. Many are addicted whether they know it or not. It's easy for them to put their fingers in their ears and tune us out or tell us where to go, because they enjoy what they're doing. It feels good and they really like how they look. They think any consequences either won't happen to them, or they think that if they do get melanoma or skin cancer they'll be able to cut it out and go on...no big deal. They don't get it and they don't want to hear about any future problems. Right now life is good and they love who they are. Just like any addict, they cannot see or perceive the damage they are doing to themselves or grasp the damage that will be done to their families one day.

Addictions can be broken though. One way or another they can, and must, be broken. Go cold turkey. Wean yourself until you're completely done. Break the cycle. If you haven't started tanning in any form, don't start. Take care of your skin from the beginning.

Tanning is dangerous. It can, and will, be deadly for many. You won't know if you're in that number until you're bitten and then it will be too late. Smokers can stop smoking and reduce their chances of lung cancer. Tanners, in a way, can do the same thing. Some can stop tanning right now and never get melanoma or skin cancer. Some can stop tanning, but, like me, you will get melanoma or skin cancer at some point. I can't tell who will and who won't get it.

Don't be like me.

Listen to me, though. You really don't want to court melanoma.

No tan, no matter how it is gotten, is worth dying over.

No addiction is worth dying over. An addiction CAN be broken. It takes guts. It takes willpower. It takes time. Be addicted to LIFE! Be addicted to your SKIN and getting it healthy and keeping it healthy.

My brother is a recovering crack addict and recovering alcoholic. Though he has been doing great these past several years, he will always have to be mindful of his triggers and avoid them. He will always have to remember where he has been and look to the future and know what he wants, and needs, to do to stay clean. I've blogged about him and you're free to do a site search for those two posts.

I'm not ignorant about addictions. Is mine the same as his? Mine's not going to land me in prison like his almost did. But, both are life altering, both are very expensive to treat, both are deadly. Dead is dead.

Melanoma has changed my family just as surely as crack changed his. Different ways, different ramifications and consequences, but changed nonetheless.

If you tan, be it in the sun or in tanning beds, or in both, think of that as your "crack".

Say "no". Learn the facts. Make the necessary life changes. Appreciate the skin tone you were given by God. Take care of your skin. Don't bake it or broil it, either naturally or artificially.

My name is "Carol" and I was a sun addict.

And now I have melanoma. Stage 3b.

It wasn't worth it after all.

charis