Friday, January 6, 2017

Please Read! Especially If There’s A Child In Your Life!

You’re reading this so you’re online. You may be on Facebook or other form of social media. Remember, once it’s out there, it’s out there…and that includes pictures and there is no age limit.

Yes, I’m being vague and I’m sorry about that. But there’s an issue you need to be aware of and I’ve just become aware of it. I’m part of the melanoma community. There are a multitude of other communities where people come together around other diseases and issues.

Beware: There are websites that use the Internet for evil, they spread lies (cloaked under the freedom of religion and free speech), and they use people’s real names…even the names of minors. They have pictures. I’ve seen it firsthand and I’m beyond appalled. I’m sickened by it. I’m not going to share a link to the website because I don’t want to give them press, but trust me, it’s there and I have it on good authority there are many more similar websites. This one is the tip of the iceberg.

These people hide in anonymity…they don’t want you to know who they are. And because of our freedoms, they can get away with it. Experts, lawyers, who have dealt with this, say the perpetrators call it “expressing their opinion.” They tell us that it’s best to ignore it.

The site I’ve seen quotes two verses in the New Testament, mixes it with their own religion…worship of the ancient Egyptian god “Ra”, considers melanoma a curse from their god and NOT a disease, and has an intense hatred of Whites worldwide. The entire site is about this. The ENTIRE site. Post after post. They use pictures of people who actually have melanoma, even children. And when they have a post that focuses on a person, they use the person’s name in the title along with the word “execution”. Many of us have reported wordpress (their host site) to them and we get a quick, “canned” response letting us know that they aren’t going to do anything about it. We’re not even sure they look at what we submit.

Remember, this on the Internet…not Facebook. They can spread this garbage anywhere and, apparently, there’s nothing we can do about it.

I have melanoma. It’s no secret. I discuss it here, on the Internet at large, and on FB. I know what I post and I knew that I could not control what happened beyond my initial post. I never thought about the ramifications. Until now.

Pay CLOSE attention to what you post ANYWHERE. Especially if children are mentioned. If your child has a disease or condition, think about what you want to share. Do you want to interview an expert for a news article? Think twice before posting their picture in the article. This is the world we are in.

I’ve seen it. Recently, in an online news article, a parent/also doctor wrote about this child’s experience, complete with picture. Three days later, this child’s picture was on this horrible website. Did I mention they use the word “execution”? And yet they get away with it.

We want to educate others. We NEED to educate others about our diseases and conditions. In articles, on Facebook, any way we can.

Just BE careful! Know there is evil out there and once you post something, you have really NO idea where it will show up or how it will be used. You have NO control! None!

Yes, there are laws, even with the FTC concerning children, but they are really hard to enforce and you can take one website down and another can be put up. The Internet is a tool…for me it’s a wonderful tool. I’m not cloned. Others use it for evil.

Go to google and put in your name or your child’s name. Add the disease or issue. Search and search in google images. Do that periodically, especially if you are active in a community.

There’s a problem. We need to figure out how to deal with it. Don’t run from it. Let’s deal with it. Things like this have to stop. At the very least, know this exists. There are no sacred cows.


Wednesday, December 14, 2016

Beyond Blessed! Living the Life!

It has been over a year and a half since my last post...a post that I, at one time, didn't think I'd ever write. A lot has happened in this time frame. My melanoma hit stage 4...advanced stage 4. Lung, spine (at the bottom of my spine where it joins with my hip), and 4 places in my brain. To back up: before being told brain, bone, and lung, I had odd symptoms and a couple of wrong diagnoses between the last post in March 2015 and when what was supposed to be a benign fatty tumor was removed and proved to be a tumor filled with melanoma in August 2015. On September 2, 2015 my melanoma specialist dr at Duke filled in the extent of where it had spread. And so the intense journey, the days of various tests and later treatments and surgery, began.

Or was it when my intense journey filled with blessings and miracles...painful as they were...began?

Yes, it has been tough. Awful side-effects that almost killed me, had to step down from my 2 pulpits in Sept 2015, couldn't handle but 2 rounds of Opdivo-Yervoy, still living with what all my brain has been through, I got down so low that we were positive I would be dancing with Jesus before my September 3, 2016 birthday. Things weren't good. At all. I still get confused. Things still go in one ear and out the other memory stinketh. My legs still don't cooperate, I'm still in bed...and I could rightfully dwell on these things and go into long detail and wallow in my difficulties.

I choose not to go that route. Not only is it my nature to find blessing and hope in the storm, but I CHOOSE to find blessing and hope.

I have been blessed with a husband who has lived by my side this whole time and hasn't complained. Sure I wasn't bedridden this whole time, but he went to every appointment and lived in a recliner for two weeks when I was at Duke. He was a good man to begin with; he has shown himself to be a living angel.

While I get confused and things come out wrong often, it's a blessing to have a good day where I can write a coherent sentence, and thank You, Lord for spellcheck! I can, talk sensibly. That's a huge blessing. I spent many days not speaking, not eating, getting weaker and weaker. Dying. While I still can't carry on a conversation over the phone (my brain just doesn't work well in that area), I can speak clearly.

I don't count my blessings. Oh no, I live them.

Mitch and I have a wonderful, loving, supportive family. Same with our family and friends. People are sooooooo good to us! All these blessing-people and the prayers they have prayed have been heard and for some reason God has made me Conway's miracle. That's what some people are calling me...Conway's miracle.

The melanoma is still there doing what it's doing and I know it.

God's still here and doing what He's doing and I know it.

When I go to sleep each night, I literally thank God for the day that is ending and pray for the day that is coming. Wherever is comes.

I'm living a life of blessing and I know it. I cannot and will not complain.

I never in a million years thought I'd live the life of a miracle. But I am and I know it.

Every life is a miracle. And then there are times when we experience something that goes beyond, far beyond, anything we ever imagined. The impossible. My still being here and being here in the shape I'm in is a miracle. A Christmas miracle. I've seen them...just never thought I'd be one!

Thank You, Lord! Hallelujah! Praise the Lord!

Merry Christmas and God bless us, everyone!


PS, thank You, Lord, for the brain-power and ability to write this post. What a Christmas present! I never thought I'd write like this again!

Monday, March 23, 2015

Melanoma Prayer Center Is Four!

And who ever would have thunk it? Certainly not me! I'm not so sure that I thought Facebook would last as long as it has without something newer, bigger, and better replacing it. But, it's still here and so is MPC. It would not be what it is without the support and participation of the most special people in the world, and that's my melahomies! Just as MPC continues to grow, learn, and evolve, so do I.

I have learned that I really am not the the Queen of Melanoma World and I have no dictatorial powers. I can pray, advocate, and educate, but I cannot, CANNOT, for the life of me take the twists and turns out of the road and I cannot level the bumps. Sigh. So that leaves "Hotel Melanoma Chaplain Boss" (or "Bossy" for some).

That would be me. And I'm good with that.

So! Listen up!

Melanoma is cancer. It is not "just" cancer and it is not something to relegate to second-class-cancerhood. Think it's simply skin cancer? Think again. Don't get bogged down on the word "skin" and think "no big deal." And newsflash! Those skin cancers that ARE skin cancer...well, they aren't just skin cancer either! They are scarring and disfiguring. And guess what? They can spread internally and be fatal, too. Their stats aren't as high as melanoma, but stats don't matter when it's YOU!

Don't ever, for even a single moment, think people can cut out melanoma and get on with their life as if nothing has happened and that it is equivalent to trimming your nails. This is so far from "trivial" you cannot imagine. Unless it has happened to you or to a loved one. Unless you have had a "melanoma" diagnosis attached to you.

I am getting mighty tired of reading the pain my melahomies endure because people think they are not dealing with anything major. We have plenty of skin, for crying out loud! Heck, it's not like brain cancer...until it spreads to your brain. Oh yeah. This "skin" cancer that's "no big deal," can spread to your brain. And it's not brain's melanoma that has metastasized to the brain. Name an internal organ. Go ahead. Pick one. Any one will do. Melanoma can begin or spread there. Mouth? There, too. Eyes? Yep, and there. Genitals and rectum? Sure. Finger or toe nails? Check all twenty periodically, because, yes indeed!

Melanoma should not be called or considered "skin" cancer. But it is, especially to dermatologists, because that's the part of us patients that they can see, biopsy, remove, diagnose. But I do wish they would remove it from the "skin" cancer category and that all doctors, of any kind, would simply call it what it is and it is MELANOMA.

Scarring, disfiguring, deadly, no-cure-right-now-exists, melanoma.

Melanoma requires a specialist if at all possible, and it's usually do-able, even if a person has to decide to travel hours to see one. See a dermatologist that specializes in melanoma and skin cancer. See a melanoma specialist oncologist and a melanoma specialist surgical oncologist. (NOTE: when we, in melanoma world, refer to seeing a "melanoma specialist," we are talking about an oncologist. Lately, I am noticing some people asking about a melanoma specialist and they are talking about a dermatologist. Yes, a dermatologist who specializes in melanoma and skin cancer is essential...BUT...not all melahomies are in need of a melanoma specialist oncologist. Though it won't hurt to see one every once in a while to stay on top of your melanoma. It can be confusing when someone asks about a "melanoma specialist" and most think "oncologist" and the one asking is thinking "dermatologist".) Aim at Melanoma maintains a list of melanoma specialist oncologists in the USA and Canada. If you are outside these two countries, check with the melanoma foundation in your country to find a specialist.

If you have melanoma, find support. Plug into the online community. We are thriving on Facebook. If you aren't on FB, Melanoma Research Foundation has a great page of support (click on Find Support). Be sure to share your story with others. Make a difference. Somehow. You matter. Your journey matters. Others need to hear what you have to say. And who knows? You just might save a life or two though you may never be told.

If you have melanoma, give support. Don't just take it, give it back. We all need cheerleaders in our corner. We all need prayer warriors...

Enter Chaplain, exit Boss.

Pray. Pray for your fellow melahomey, yourself, your family, your medical team, open doors to the treatment and doctors you need, research, more and better treatment options, cures (it will take more than one cure since this is a highly individualistic disease).

Work on anti-tanning bed legislation. Raise money for research. Write a blog or a book. Participate in Walks. Create billboards with a message. Get your vehicle detailed with melanoma awareness info and pictures of people who have the disease or have died because of it. Create a website and/or Facebook page that is informative. Be an encourager, but an honest encourager. Give hope.  Get busy, to the best of your ability, and do something. Make an impact and leave your footprint somewhere on Melanoma Road. Seek to diminish that which seeks to diminish you.

That's why I started MPC in the first place four years ago. I can pray. Preachers are expected to do that (insert annoying smiley face). And I wanted to diminish that which seeks to diminish me (and that's putting it nicely!).

What can you do? Find your niche. Everyone has a niche that only they can fill. I have definitely learned that in four years! We all have tools, gifts, graces, and talents at our disposal. So dispose of them for the good of humanity.

Excuse me a minute while I get out my tiara and pretend that I really am Queen of Melanoma World...

Do all this because I have so decreed!


Friday, December 5, 2014

Living In A PC World

That would be "Post Clark." Specifically, George Clark as there are certainly many, many other wonderful Clarks left!

Countless people have traversed this way before me and it's a season that I knew would come. One day. At some distant point in the far away future. And Daddy would be terribly, terribly ooooolllllldddd and I would, somehow, be "prepared" whatever that word actually means. To be frank, and I am, I think it's a terrible word to put in the same thought as someone dying. How in the world does someone actually "PREPARE?"

I thought I knew.

I was wrong.

So awfully, terribly, horribly wrong.

It hit me yesterday and it hit hard.

My Daddy died Thanksgiving Eve, November 26, 2014 sometime between 5:30 and 6 pm. At home. On his knees fixing Mama's clogged bathroom sink. Dang it, the man was supposed to be taking a shower before supper! What in the world was he thinking?!

He was thinking, and I know this because I know my Daddy, he was thinking, "I've got my trusty screwdriver and Bettie has a sink that needs my attention IMMEDIATELY! I'll take a shower later when I really need it!"

So he donned his invisible "Super-DIY-er" cape and took tool in hand and got to work. But he never finished the task and really, he probably got no further than getting on his knees. His heart spoke up and said, "Whatcha doing George?" And God spoke up and said, "George, your room is ready. Come with me."

And Daddy went. He didn't get a choice in the matter and neither did Mama when she went to call him for supper and found him. Dead.

And it was Thanksgiving Eve and Mitch and I were at Warren Plains United Methodist Church and I was 15 minutes from starting our service when the call came. THE CALL. It came at approximately 6:45 pm that night. From our son-in-law and he didn't want to tell me. The people who were already at church heard me make noises they probably didn't know I could make (I remember getting really high pitched!)

Did I mention I serve the best people on the face of God's planet and that I was where I needed to be at the moment? Looking back, I can see God at work and His perfect timing but at the time all I could see were tears from Warren Plains until we got to around Weldon. They just couldn't seem to stop. But when they did stop, I didn't cry again until...

Yesterday. The season was calmed and people were gone and life resumed and it hit me.

I now live in a world without my Daddy.

And while it hurts

I am so grateful to have lived for 55 years in a world with him!


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 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?


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.


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 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.