Sunday, February 12, 2012

Come Over To The Dark Side...Of Melanoma

I know today is Sunday and it may really seem strange for a preacher to say "come over to the dark side" of anything. But the Lord woke me up, again, at around 3 this morning with this on His mind. I tried to remind Him that I had to get up at 5 to get ready for church. But God was already up and He wanted to talk. Sigh.

So here's a bit of how that conversation went.
God: You know that blog post you wrote yesterday? You aren't getting through to people like you need to. You're too happy sounding sometimes with your style. I know your blog is called "Attitude of Gratitude" but you need to get beneath the surface of melanoma. You need to let people know about the dark side that people without melanoma don't see.

Me: OK. I gotcha, Lord. Time to get real.

God proceeded to remind me of the unique position He has put me in. I'm sure there are other people in similarly unique positions to hear real stories from a lot of real people. But as a pastor and as writer and admin of Melanoma Prayer Center on Facebook, I'm in a position to hear from people about the emotional toll melanoma takes; the fears; the spiritual questions. And I've been there, am there, and will never leave there.

It's those things often our family and friends don't even see that you need to know about. Right now, if you don't have melanoma, you probably aren't too worried about how you would handle it. Actually you probably don't give it a second thought. You've maybe seen people with melanoma and they look good. We don't often look like "cancer" patients.

Our psyches don't look good though. They're a mess. Our bodies are often easier to deal with than our fragile emotions. Here's what mine looked like when I was diagnosed. I knew I had melanoma in my mole. It was completely raised, black, and the day it was removed it had started bleeding. I also "knew" it would be cut off, I'd heal, and I'd be fine. I was prepared for the voice mail I received from the doctor at Duke Urgent Care saying melanoma was in the mole. Yeah, yeah. I wasn't prepared for his next sentence, "I've made you an appointment with an oncologist at Duke to see what we're dealing with." That statement brought me to tears and sent me into Duke Chapel crying. I wasn't supposed to have anything to deal with! I had that mole cut out and had the long sutured place on my arm to prove it. THAT was all I supposed to deal with! I knew what it meant to see an oncologist! What I didn't know was the journey I was now on. The one I will be on until I die.

It's a scary journey. The more you learn about melanoma the scarier it gets. The worse part is looking in the mirror and applying what you learn to yourself. The not knowing. The what-ifs. The wondering if you've got a renegade cell somewhere growing in your brain, lung, liver. The watching people you come to know, love, support, pray for, email, cry with, become people you cry over when they die what you know is a damn horrible death. And you know their end could be your end and you cry yourself to sleep many nights over that thought because you know that "thought" may become your reality one day. And you know it's going to become the reality of far too many other people you love. You look at your children and pray to God they don't ever get it. That your melanoma is the closest to melanoma they ever get. But you know you're third generation and one of your children could be fourth and your grandchild could be fifth. Hell and damn that dark side!

And it's Sunday and oh yeah, I said Hell. That's where melanoma will go one day for good, but not before it takes a lot more lives. Still think you can handle it?

I've held the hearts of too many wives caring for their husbands and too many husbands caring for their wives. I've got my own husband I've watched this take a toll on. Can you say depression? High blood pressure? Having to be hospitalized with blood pressure in stroke territory and the doctor agrees that you're the cause because he's been so worried about me and my melanoma? That's what I live with. It takes its toll on marriages. Some it strengthens. Some it tears apart. Some actually do end in divorce. And they probably wouldn't have if it wasn't for what melanoma brings to a marriage. Do you know what melanoma brings to the table besides the obvious? It brings real financial hardship. Sometimes the family loses their insurance coverage and no other company will pick them up...you do NOT want to live that scenario! Trust me.  It changes the sex life and the work life and the ability to do day to day things. Anything and everything that is part of your life will change. How you handle those changes will be up to you. How your spouse handles those changes is beyond your control. If you've ever wondered how compatible you really are, you will find out when melanoma becomes part of your union.

It also saps you of energy. Then there's all that multiplied if treatments are pursued. Interferon, IL-2. Yervoy, to name three, they all take another toll. There's gamma knife, radiation, surgeries. Some people do pretty well. The reactions and side effects run a wide spectrum. Sleeplessness, anger, fear, near death, chills, hair loss, numbness, lymphedema, hunger, nausea, fever, did I say near death. There's the realization you really are mortal and while that can be freeing and bring about a needed change in priorities and zest for life and lead you to fulfill dreams while you can, well, there's also the sudden realization that you're MORTAL. You really will die and if melanoma has its way, it will be long, painful, and beyond horrible, and you'll be too young to go like that. Nobody should die like that.  You will have seen the pictures, watched the videos, looked at yourself, talked with others further along the journey than you, and you will have read their stories. Of people with melanoma of all ages.

I get to hold the hearts of parents who take care of their children with melanoma. Younger than ten. Teenagers. Young adults in their twenties and thirties. I've watched as parents buried their babies. You want to hurt your parents hearts beyond anything their hearts can bear? You will see their strength, determination, love for you, and support. People like me will cry with them and hear their pain, fear, brokenness. If you are the child, of any age and melanoma becomes part of your life, your parents just walked into hell but you'll probably never see it. They're the "parents" and you are their child. They'll walk into hell and back for you and with you. And their hearts will burst with pride at how you cope and their hearts will drown sometimes with silent tears. You don't want to be there when you die. They'll carry on. Just like spouses carry on and children carry on and siblings carry on. But, for your parents, this isn't how it was supposed to be. You were supposed to bury them. They were never supposed to bring you in this world and see you out of it. Life's not fair.

People like me will get the questions of your spouse, your parents, and your children, Want to really break some hearts? Have children or hope to one day? Look into their eyes and let them know you've got melanoma. Explain what that means. Welcome to hell. Been there. It changes their lives in ways you'll never grasp.

Melanoma sucks. There. I've said it. I probably won't say it that way again because I was raised not to say that word. But I choose to honor and stand with my fellow melanoma friends who will loudly say it and correctly admonish all who will hear that we need to be able to say that.

It sucks to watch young, vital men and women talk about all the tumors growing in major organs and they're giving it their all to fight them, kill them, or at least get them stable so they can live another day.

It sucks that melanoma is the most vicious cancer there is, the deadliest cancer on earth if not caught early enough and even then it can still be deadly. It sucks to live in fear of appointments because you never know what you'll be told, how your life will change, how your family's life will change. Will you live another year? Day? Month?

It sucks to do your damn best to try and tell people who know your story that it can be theirs if they aren't careful and they practically laugh in your face. It sucks knowing a melanoma diagnosis drove friends to Xanax to help them cope. It sucks to find out teens you know are happily going to tanning beds. It sucks to know that people just don't get it until they get it and if only they had listened to you instead of Dr. Oz.

It sucks that politicians refuse to do the right thing in favor of the tanning bed industry. It sucks that there are real people running tanning beds, propagating lies, charging people to kill them. It sucks that Hotel Melanoma will never be run out of business but will always have to expand. It sucks that better treatments can be found and maybe even a cure but all that costs tons of money and melanoma just doesn't seem to count. We aren't high on the cancer ladder.

It sucks to watch melanoma kill, destroy, and ruin lives. Young lives. Old lives. Middle-aged lives. Yes, we all will die one day from something. It just sucks that it can be something like melanoma.

Maybe this will give a better idea of what melanoma is really like. The part you don't see and won't see.  Most of us, from what I've seen, really are upbeat people who are determined to live life to the fullest. We're warm, gracious, loving and helpful. Anyone who joins the melanoma community becomes part of a family that will stand with you, pray for you, and support you any way we can. We are people of faith, who believe in God, and this twist in our road has brought us closer to Him. For that I am truly grateful. I've experienced untold blessings that can be traced back to God redeeming my melanoma. Countless of us can say the same thing and do.

But we also know the dark side; the private side. The side that God comes along side and shines His Light into. He does not leave us alone in the dark.

And I am grateful!

19 comments:

  1. Tears here, lots of tears.....for all of us....who are living with this horrible monster.

    ReplyDelete
  2. After reading this blog I need to stand back and say Thank you Jesus for taking my Daughter when you did, Thank you Thank You Thank you! My 31 yr old Daughter was diagnosed with Melanoma in Aug 2011 and lived 167 days! In one month it spread everywhere, my only child, only one I ever wanted and now she is gone. I am so thankful she didn't suffer more than she did! She left behind a 4 yr old little girl that she wasn"t suppose to have, now to grow up with out her Mother. Unreal! But as today in church, its his Amazing Grace that will carry us thru. Dear Father I pray now for all your children,their families & friends that are affected by this horrible disease. Thank you for the precious child you entrusted me with here on earth, lead me Lord to help others that hurt like me but Trust in you! Lead me, guide me & direct me lord to your will with this journey that we are on. In Jesus name I ask these things Amen

    ReplyDelete
    Replies
    1. Oh Sue, I am so sorry about your precious daughter! You know just how vicious this disease is. If my math is right, she just died, is that right? I can tell by what you write that you're a wonderful mother and grandmother. One day you'll be reunited with your child, never to be parted again. Melanoma can't touch her now. Jesus has seen to that! If you ever want to "talk" please feel free to connect with me through Melanoma Prayer Center on Facebook...link at upper right corner of this blog and from there you can private message me if you'd like on my Rev's page. I'll be holding you in prayer, Sue. Blessings.

      Delete
    2. Yes she died Jan 18th! Only 31 yrs old this is just so hard but I will keep trusting in Jesus! Yes I would like on your page. I just can"t believe how fast it took her! It's a MONSTER!!!

      Delete
    3. Sue, I am so, so sorry! I'm sure it's hard, but hold on to your faith or it will only be harder. UP at the right of this blog is a link to Melanoma Prayer Center and also one to Melanoma Grief Chapel. Both are open community pages and you don't have to "join" them like a group. You don't have to be a part of Facebook to read anything or play any of the videos, you do have to be on FB to leave a comment. You will come in contact with other parents who grieve and also with other parents who are making this journey with their children who have melanoma. People come to MPC from a variety of connections with melanoma. Not everyone has it, some are parents, spouses, siblings, friends...I do have it and am stage 3b and have been NED since 2008.

      Delete
    4. Carol, I followed your instruction to the link at the top right but it keeps going back to the FB page, I don't know what I am doing wrong but I can't find the videos or the group talks.

      Delete
    5. I'm sorry Sue. I'm not sure. Melanoma Prayer Center is a FB page, but to the best of my knowledge, you should be able to see it. I will admit FB has changed some things recently, and they always seem to be changing something, so it may be that they won't let you do anything now without becoming part of FB. I'm sorry, but I am glad to know that's the case so I'll stop telling people differently. If you don't want to join Fb, and plenty of people don't, feel free to email me if you want to carol_c_taylor@yahoo.com

      Delete
    6. Sue, today I started an Internet edition of the Facebook version of Melanoma Prayer Center with folks like you in mind who aren't on FB. The address is
      https://sites.google.com/site/melanomaprayercenter/

      Delete
  3. Carol, you have really captured the emotion and turmoil that all of us with a lifetime membership in Club Melanoma experience. Thank you for listening to God and bringing the dark side into the light.

    Sue, you and your Granddaughter are in my prayers.

    Darryll

    ReplyDelete
  4. Thank you for your posts they hit it right on the head; yes cancer sucks; melanoma more so as it can hide until it is too late. When we got the diagnosis I thought it's just skin cancer - no problem. Toe was amputed we are good to go. Then I started googling melanoma only to discover that NO it is not just skin cancer. It will be my husbands death. As terrible as this sounds I thank God that Larry's kidneys shut down from the chemo. It was a fairly painless death; I lost him sooner than if he had died from the melanoma but nobody deserves to die like that. Keep up your good works. Sonja Krueger

    ReplyDelete
  5. wow. Perfectly worded Carol. Thank you.

    ReplyDelete
  6. Thank you & God bless you... people just don't seem to get it unless they've walked in your shoes. It changes your life forever. Remembering when I first got the news, my daughter was only 14 at the time... wondering will I watch her graduate from high school, will I live to see my grandchildren... So many fears, feeling just like you wondering if there's that renegade cell & feeling like I'm a walking time bomb. I could have NEVER made it this far in my own journey without faith & belief in God's will. And so it will be okay whatever the outcome... but it does suck!

    ReplyDelete
  7. AWESOME!!!!... I feel alot of those feelings..I think sad and fear are my worst.. but I try not to be fearful.. that is not of the Lord!... Thank you Pastor Carol...God Bless

    ReplyDelete
  8. Wow Carol! You explained the dark side of melanoma very well! It is a haunting disease that people do not understand about. I try to forget, live, laugh, and be well, but there is that deep black hole that I could fall in at anytime. This takes a toll on the emotions big time. Living the best I can with the resources I have at this moment in time...that is my motto now. I no longer look toward the future like I once did. I can only live one moment at a time. Thank you for sharing. Rebecca Moser

    ReplyDelete
  9. Belva Price wife of Lynn my sweet husbandJanuary 3, 2014 at 8:01 PM

    You just put into words everuthing everyone should have to read no one understands melanoma only the ones that have experinced it can relate. Thank you for sharing. Then people wonder why we greive but you know 42 brain tumors 5 gamma knife surgeries and a 2 year battle will drive you into deptession.

    ReplyDelete
    Replies
    1. The two of you went through a horrible ordeal, Belva. So many prayers are with you.

      Delete
  10. Wow
    The truth as we've come to know it

    ReplyDelete

Thank you.