Tuesday, January 31, 2012

Blessings

I guess sometimes we ("I") need to be reminded over and over what "blessings" are. Cars are nice, so are clothes, food, and shelter. Education is priceless. They are blessings and necessary. But we don't actually have to have the biggest, fanciest, priciest, or grandest of those to be "blessed." We still have value. We can live in this world quite nicely without being world travelers or having the latest technological gizmoes.

There are a lot of things we can live without. But we can't manage without people (or dogs, but that's another soapbox for another day). We can't manage without a support system.

People are our biggest and truest blessings. It's not that I'm forgetting God or leaving Him out on purpose but I write about His blessings a lot and people are among His finest!

God even has a way of taking things that are "curses," mixing people into the equation, and voila!, He's turned a sure-fired curse into something of a blessing that we wouldn't have without the curse! Only in God's Hands...

...can something as horrible, dreadful, and evil as melanoma become a vehicle of blessing. But it takes people to make it so. If it were not for melanoma, I wouldn't have met the most amazing people. If it weren't for melanoma I wouldn't hear their stories and be reminded that we ALL deal with something, no one has a "perfect" existence, and if they think they do then eventually something will clamp down and bite hard. Someone is always worse off than me. Someone always is at a more difficult part of battle than me and I can learn much from them on how to fight. We all have to learn to "suck it up" and move on because the alternative is even worse.

As I hear stories, I learn how God is using people as our support systems. How He uses them to encourage and help us pursue our dreams, dreams they wouldn't necessarily encourage us to pursue if melanoma wasn't part of our lives. How God opens doors and uses people as doorstops. How God involves people in our health, healing, wholeness, and miracles. How God uses people to give us hope and love, thereby increasing our faith.

I heard the most amazing story yesterday and told her she needed to write a book. Her response? "It's already in a book." She is one of our own in melaland. Here's a link to the book. Her story is actually the story of healing experienced by a cancer patient named Debbie. Real name, real story. What isn't told is that her cancer is melanoma on pages 61-63. However, on pages 94-97 she shares her own story and melanoma is named. Her story is the one that has been used by the Catholic Church to propel Father Nelson Baker towards Sainthood. He has already been elevated to "Blessed" in part because of her story. How awesome is that?! Because of melanoma. Because of melanoma her husband encouraged her to pursue a dream that is taking her places. Because of melanoma she is blessed and is a blessing. Who knows how long her healing will last? Who knows how long she'll be able to keep living her dreams?  Only God, and she'll tell you that. She'll also tell you that she's fine with that. God has and continues to richly provide and bless.

I've met so many others in cyberspace that are blessings. Blessings they probably wouldn't be if melanoma wasn't part of their life. Debbie is the first melapal I've actually met face-to-face. February 15th I plan to meet others. November 17th I plan to meet even more. They are living, breathing blessings. They have amazing support systems who are living, breathing blessings also.  A lot of what they do, how they are used by God, and the blessings they give the world are solely due to melanoma being part of their life that God has touched, redeemed and transformed.

As for me, melanoma has taken me out of my shell and God keeps peeling back layers of my personal onion. I'm not the same person I was when I woke up that early July 2008 morning. I'm not the same person I was when I woke up yesterday morning. Hallelujah and God willing I'm not the same person I'll be tomorrow when I wake up.

We all have something to live with that can easily be viewed as a "curse." We all have something we just have to suck up and move on and get past. We all have something that makes our life less than perfect. We all do. And we can all decide whether or not to be perfectly miserable and make others miserable. We have that option. Sadly, many take that road. Sadly, many don't have support systems that encourage them to still live and pursue their dreams, whatever they are.

We all, also, have a God Who will meet our needs if we but ask, seek, knock, persist, and believe. We have a God Who graces our lives with people who will walk with us and support us. He has people just waiting to be our blessings.

He also calls us to be blessings as we are blessed. Need a blessing?

Be the blessing you seek.

And be grateful you're here to do it. It isn't about you, after all. It isn't about me either.

It's about faith. It's about God.

It's about being grateful for the blessings we've been given and increasing the blessings others have.

Saturday, January 28, 2012

Let's Play Russian Roulette, Or, You Just Gotta Love People!

Quick questions to all my friends who do not have melanoma: Do you have full-body skin checks by a dermatologist once or twice a year? Are you concerned, at all, about getting melanoma? Why or why not? I plan to use this in a future blog post or note on Melanoma Prayer Center...no names will be used. Thank you!
Last night, as I write, that was what I posted on my Face book wall.  Last night, as I write, I had 425 friends, several have died, and probably 140 have melanoma. So, approximately 280 people could have responded to that simple survey. Because that's just not realistic, I thought...hoped...prayed that at least 10-15 would. 
A grand total of four, 4, f-o-u-r, friends that do not have melanoma responded. All of them are my friends because of a melanoma connection. No one who knows me face-to-face answered three simple questions, two of which only required a "yes" or a "no." 
Let the games begin! I know I'm obnoxious and tiresome. I know I know one song to sing, but give me a little credit...I sing it mighty well! I sing on key and on time. I hit the notes proudly and try to give my best "Ethel Merman effort" as I belt out the words.  
I love the ladies who took the time to respond. They've learned well and they've learned the hard way; the really hard way.  I even love the folks who saw my post and didn't respond. To be honest, I probably wouldn't have responded to me either before July 2008.
But I've played my game of Russian Roulette, and I lost. People with skin, but without melanoma and who aren't having full-body skin checks by a dermatologist at least once, if not twice a year, are playing their own game. 
Before I get too far ahead of myself, let me turn the clock back to yesterday afternoon. I looked at the WRAL online news and there was an article, "Study shows children getting too much sun." Me being me, I had to read the comments. Man, there are a bunch of idiots running the streets of NC and raising children! Our melanoma ranks will surely swell based on what I read. One man, Casu-Al, stood out from the pack. Casu-Al is better known in melanoma circles as Black Is The New Pink and fearless. He is also, sadly, outnumbered.
These are a few actual comments, copied and pasted, without the ID of the author but you can follow the link above and see the authors:
Without the sun no life would exist on earth! As with anything too much of it can be bad. Please do not let the biased liberal media poison you with false science. It has never been proven that sun exposure causes cancer. Cancer is caused when the skin mutates during the healing process after burning. Your body is supposed to tan and it then produces Vitamin D. It is a natural process! These reporters come up with everything they can to scare the mess out of everyone and to sell more news 
50% reported they had at least one episode of sunburn by age 11? That's not bad at all! We used to spend hours in the sun with little sunscreen on back in the 70's and were always tan or a little burned. So far we're all still here and no cancer. People worry to much about stuff like this, especially germs. I think these studies get money from the companies that make items like suntan lotion and hand sanitizers for writing stories like this and making people scared. Now if video games were giving off these rays, then kids would be getting too much sun! Just try not to burn yourself and see a doctor regularly!
How can a child that is only outside for 1 to 2 hrs a day in late afternoon for soccer practice be getting to much sun. If sun was the problem almost every adult over the age of 4o would have skin cancer. We played outside as small children then we had a chore or two that we did outside mowing and raking the yard, washing the car and then many of us did have jobs picking fruit vegetables and other crops then if we were luck enough to be near the beach we could go after alll chores were done.
And my personal favorite:  Just enjoy your life, people. You will not live forever. Go to the beach, have fun in the sun, enjoy your family and friends. It all goes so quickly anyway. Worrying about danger 24/7/365 will wear you out and kill you FASTER. BTW, you NEED sunlight to create vitamin D.
Those comments and displays of ignorance, prompted my Facebook questions. Did so few answer because it wasn't part of a FB game? No app required? Did they see it, squirm a little, and look away? Did they say, "Oh no. Not again"? If I had said "repost if you agree" would I have gotten more responses?
Who knows? Who cares? Me. Like I said, I've played my game and lost. I had a mama nagging me about that mole, I had a daddy chiming in. I later added a husband to the mix who told me the same thing. I tuned them all out after telling them repeatedly that it was only a mole and it wasn't going to hurt me and to leave it alone. Who knew death came in such a tiny package? 
Trained dermatologists know. I know now. Millions of us know. Nobody wants to take your fun in the sun away. We just want you to practice safe sun. Nobody wants to turn you into worry warts. We just want you to take your warts and anything else on your skin seriously so you'll not have anything to worry about! 
We don't want you to die your death from melanoma. Yes, we'll all die from something someday. Melanoma is truly unique among cancers and among cancer deaths. No one wants to die from any cancer. Trust me when I say you really don't want that cancer to be melanoma. It's vicious beyond words. Out of respect for those fighting the tumors, I'll not go into detail, but if you're reading this, you're online. Look it up. Or, look at these videos of a real man who died a real death from melanoma. He was under 50...and yes, his stemmed from using a tanning bed.
I like to sing. Singing this song is part of my life and part of what I do. It is who I am. I am this song and I can do no less than to sing it loud, sing it strong, sing it long. I don't worry if it's not good enough because I want you to hear. So I sing. I sing my song. 
Heck, I'm grateful I'm here to sing it! But I prefer to sing solo. I don't want you singing with me. I'm tired of singing with and to the choir. The choir knows the song! 
So, I'll keep singing. It's your choice whether to tune me out or not. If you're smart you'll listen to the words and heed them. If not, well, let me give you instructions on 'How to Play Russian Roulette for Losers." I've got lyrics for that song, too. Either way, I sing.
And I am grateful!

Thursday, January 26, 2012

Tanning Legislation: Let's Out-Law Some Death

Too bad we have to try and legislate common sense and life. I am sorely tempted to launch into a diatribe about common sense, not courting death, not being stupid, etc; but I won't. The people who need to listen to that won't and don't. They don't believe melanoma can happen to them so they keep courting disaster. They'll get it when they get it and say "I do" to the disaster that is wooing and pursuing them. It will be a match made in hell. They'll listen then, but it will be too late. They'll join the choir I sing with.

No. This is for those of us who are well acquainted with melanoma. I, personally, have never even seen a tanning bed up close and personal. Don't want to. As a preacher, I've seen plenty of coffins. They just usually have dead people in them; not live. Oh well.

I do, however, know the dangers of tanning. I do know the dangers of tanning beds. For the life of me, I cannot understand people who want to make their living selling human leather and death, and who turn a deaf ear to all the warnings. That's plain immoral. I cannot understand people who continue to plop down their money at these places and play Russian Roulette with their lives. There was a time that the dangers weren't known. They are now. I've got far too many friends in melaworld living with the consequences of those trips to the tanning salons. Their lives are forever, needlessly, changed. I witness parents standing with their sick, very sick, children, who battle melanoma and fight for another day.  I witness beautiful young adults wishing they could turn the clock back and realize "pale is sexy and beautiful" is the truth, and that "tan is sexy and gorgeous" is a deadly lie.

I've seen far too many die young because they couldn't turn the clock back and NOT go to that tanning bed. NO tan is worth your life. But because people still aren't listening despite the people that surround them that testify TO life and against tanning, states now have to turn to legislation.

Melapals, that's where we come in. We're needed and this is our rallying cry. AIM at Melanoma is leading the way across the USA and they need our help.

To find out what the current law is in your state, go here and scroll down to the appropriate link.

They have a toolkit to help you, but you have to email them to get it. Info is here.

When you look at what states are doing, if anything, about tanning beds, you'll notice that some states mention "doctor prescriptions." Now, a sane person might ask, "Why in the world would a doctor with a valid license prescribe a tanning bed?" Good question. The answers are nutty, but the question is good. This will give some insight.

The USA isn't the only country tackling tanning beds. Australia is too and I'd like to give a shout out to Jay Allen and his work.

Finally, if you'd like to see what melanoma looks like, and this was due to tanning in a tanning bed, look at these videos of a wonderful man who died in August 2011. RIP Eric and thank you!

Nobody likes to see common sense have to be legislated. But that is where we are with tanning beds. They ought to be illegal. Period. The law in all 50 states should be, "If you're alive you can neither buy one or get in one no matter how old or young you are." We aren't there yet.

"Coffins are for the dead, not the living." "Dead ain't sexy." "People don't get it until they get it", referring to melanoma. I can come up with all kinds of clever mantras. I can't write laws.

Friends, they don't know what they stand to lose. We do. Let's help them out and work with AIM.

Maybe one day some of these people will be grateful. At least they might be alive.

Thank you. I'm grateful, on their behalf, of the work you will do because you care.

Monday, January 16, 2012

Hold Out Your Candle

We live in a world that knows dark pockets, dark places, dark souls, and dark diseases. We live in a world that knows, and often celebrates, dark colors...colors that create shadows in hearts and lives. We all experience dark, devastating times and seasons in our lives and we look for the Light and sometimes we're happy to settle for light, any light, just as long as it shines into our voids and illuminates our way so we can see clearer and live better.

The world of cancer is just such a place. A place that knows the darkness of fear and dread. A place that's all too familiar with the final darkness of death. Most cancers, though, in their ribbon campaigns use bright colors. Not melanoma. Our color is black and our mascot is The Beast. We are a dark-colored lot to be sure. But that is on the surface. Outsiders expect that our world must be truly hideous (and it often is); they expect us to be full of self pity and unapproachable (who has time for that?); they expect us to be in their faces telling them to practice safe sun and not to tan in tanning beds (well, yeah, duh); they expect us to want to bombard them with our stories and show them our scars and scare them silly...

And that's where we can fall short. Many of us do. But many of us retreat into cocoons and stay there. Nature never intended caterpillars to remain in cocoons; they must emerge butterflies and fly free from the restraints of being a caterpillar. So, too, those of us with cancer, need to strongly consider leaving the safety of the cocoon and being transformed into butterflies who fly into the face of cancer free from the restraints that would hold us back.

Cocoons may be "safe", but they are lonely places. One caterpillar per cocoon is isolating. They can't draw strength, hope, comfort, and peace from being alone and wrapped up in their own little world. They simply cannot. They cannot fight back, come together, support each other, and brighten up the world as long as they stay wrapped up in themselves.

But, oh how the world changes when they break free of those threads that held them back! How they have been changed as nature does what nature does to complete their metamorphosis! They look absolutely nothing like the caterpillar they were when they wove that cocoon around themselves. They act nothing like a caterpillar. Everything about them has changed; even what they are known as, for they are no longer "caterpillars" but now they are "butterflies." And the world changes. For the better.

Metamorphoses take time though. It's hard to rush right out after a melanoma diagnosis, or any cancer diagnosis, and claim it as your own and throw it in the world's face. Retreating into a cocoon is normal and natural. We can want to stay there where we can fool ourselves into a false sense of warm and cozy and safety. The truth is, though, being wrapped up, all alone with nothing but melanoma and no one but yourself is dangerous. It's also what the Beast wants.

So we must copy the butterfly and we, too, must change the world...our world, when we break free of feeling like "cancer is my private world and this is my private story and I just can't share it with anyone." When we dare to break free, speak up and speak out, and turn around and boldly confront that which seeks to destroy us. When we do that, we find we aren't alone. We find that there is community out there standing willing and ready to embrace us and walk with us. Support us, listen to us, commiserate with us, give us facts and give us hope.

We find there are people already flying free and shining brightly. We certainly find that in the world of melanoma. We find butterflies hold out candles that light the way for themselves and for others. And butterflies fly those candles, headlong, into the darkness of melanoma and all cancers. I recently put together a list of all the blogs I know about online of melanoma stories and awareness advocates: They Dare To Care. Support groups and melanoma awareness and advocacy pages are popping up regularly on Facebook. There are melanoma specific websites and some host discussion groups. Other butterflies are utilizing their own talents and business ventures to hold out candles that illuminate melanoma such as Kspin Designs. Then there are butterflies like the David Cornfield Melanoma Fund and AIM at Melanoma that refused to let the melanoma-caused death of a loved one have the last word.

I like the idea of being a butterfly that has left my cocoon. I like holding out my candle as a beacon of hope. I dearly love meeting others who break free, fly free, and burn free. And give freely.

I leave you with this video, Chris Rice's "Go Light Your World."



Take your candle and run into the dark world of melanoma! Shine some light into that darkness and light the way for others. As you do, you'll find other lights burning brightly. Together we will illuminate the darkness and make this world better for future generations.

And remember, we don't light our candles ourselves any more than we can emerge from our cocoons under our own power. We get our light from the Light of the World, the Creator of butterflies and caterpillars, the One Who truly illuminates all darkness and Who calls us forth from the dark, lonely world of the cocoon and bids us fly free. The One Who gave us our candles in the first place and Who will never put them out. May we light up this world and one day burn bright in the Light of God for all eternity.

For now, while melanoma may be part of your world, remember who you are and Whose image you are created in. You don't belong to the Beast and you don't need to live in darkness.

Hold out your candle. For all to see. Run into the darkness.

Make us all grateful.
 And if you want to see what the metamorphosis looks like to go from caterpillar to butterfly watch this:

Friday, January 13, 2012

Let's Get Serious: The Link Between Breast Cancer and Melanoma. Men, This Is For YOU, Too!

Sometimes I don't want to sit down and write something! Sometimes I wish it wasn't necessary! Sometimes I'd love to send links around the world and put a piece of paper in every hand and a wake up call in every heart and tune every ear to listen and pay attention. Sometimes.

This is one of those times. If you have a breast or two or did, whether you're a man or woman, please keep reading. If you have any skin, whether you're a man or woman, please keep reading. If you have BOTH, whether man or woman, for goodness sake (and your own) please keep reading!

There is something going on in the world of cancer research that YOU need to know about! Not knowing can cost you your life. It can cost you the life of someone you think you can't live without. Don't stop reading because you're saying, "Well, if it's in the world of cancer research and it's important, then my doctor knows about it and that's all I need to know." You might need to take shovel in hand and start digging your own grave. I'm that serious.

We live in a world of specialized medicine and there's an excellent chance your doctor does not know that there's a definite, established link between breast cancer and melanoma (the deadliest "skin" cancer; which it really doesn't need skin to start in and it's a monster all its own...another soap box for another day). That includes oncologists who we would think would know. Make NO assumptions about what your doctor knows and doesn't know! Print out the article linked to below and hand it to him or her and say, "I've got a concern and you better take it seriously because I refuse for you to let me die." If you have had or are currently battling EITHER cancer, you need to be vigilant concerning the other.

I encourage you to read this Melanoma and Breast Cancer: A New Warning.

"If you've had breast cancer or melanoma (the deadliest form of skin cancer), be aware that having either one raises the odds of developing the other, according to a new study published in the Irish Journal of Medical Science.
While earlier studies have noted an association between the two malignancies, this is the first time researchers have explicitly advised doctors to monitor breast cancer patients for signs of melanoma, and vice versa. They also recommend that melanoma patients with a family history of breast cancer have regular mammographies or breast MRIs (magnetic resonance imaging)."

That's just the opening two paragraphs but I hope that has your attention and you read the article.

We live in a world that pays a great deal of attention to breast cancer, and remember, MEN get breast cancer and die from it, too. I live with melanoma and we know that the Black C gets ignored. Folks, it's time to join forces. Pinkworld needs melaworld at their table and vice versa. Science says so.

So do real life humans with real stories that are living the link. There are men and women, today, who are living with breast cancer and who also have or will have melanoma. There are men and women who have died because melanoma arrived on their scene after breast cancer. There are, likewise, men and women, today who are living with melanoma and who also have or will have breast cancer. There are men and women who have died because breast cancer arrived on their scene after melanoma. We weren't aware of the link. We are now.

Some statistics of each cancer:

 Estimated new cases and deaths from breast cancer in the United States in 2012:

New cases: 226,870 (female); 2,190 (male)
Deaths: 39,510 (female); 410 (male)
http://www.cancer.gov/cancertopics/types/breast

"The American Cancer Society (ACS) estimates 229,060 women and men will be diagnosed with invasive breast cancer this year, and that 39,920 will die from the disease." (ACS projections for 2012. Read here).

 Estimated new cases and deaths from melanoma in the United States in 2012:

New cases: 76,250
Deaths: 9,180
 http://www.cancer.gov/cancertopics/types/melanoma

"It is estimated that 70,230 men and women (40,010 men and 30,220 women) will be diagnosed with and 8,790 men and women will die of melanoma of the skin in 2011" (found here). (Notice this stat is from 2011 and the stat right above this is the 2012 projection).

Melanoma is on the rise and projected to keep rising.

"Melanoma is the deadliest form of skin cancer, and incidence rates have been climbing steadily for the past 30 years. In fact, since 2004, incidence rates among whites (who are most likely to develop the disease) have been increasing by almost 3 percent per year in both men and women. Melanoma is now the fifth most common cancer among men in the US, with 44,250 expected to be diagnosed this year, and the sixth most common cancer among women, with 32,000 new cases anticipated this year. The lifetime risk of developing the disease is now 1 in 36 for men, and 1 in 55 for women." Read the entire article, "Jump in Melanoma Cases Expected in 2012".

"Perhaps dovetailing with the increased use of tanning beds, melanoma is becoming increasingly and alarmingly more common, moving from the No. 6 slot in 1997, to a projected No. 1 by the year 2022." Read the entire article.

I also encourage reading Cancer Facts and Figures 2012. Get this, "Considering all cancers, the report predicts that 1,638,910 people will be newly diagnosed with cancer this year in the United States, and 577,190 people will die from it." http://www.knowbreastcancer.org/news-research/news/acs-predicts-over-260000.html

That's just in the USA alone!

Melanoma is on schedule for overtaking breast cancer and all cancers in ten years. TEN years. It's climbing the cancer charts and that's not good. Mamas and Daddies, look at your little ones running around today. Children can get melanoma and breast cancer, too. So can teenagers. So can you.

Be proactive, vigilant, and know your bodies. Know the facts. Make sure your doctors know and don't assume they know. Particularly if breast cancer or melanoma is already part of your life!

Scary? You bet. It's scarier not to know and be caught off guard, though. I'm not trying to actually "scare" you into living in a state of constant panic, fear, and dread.

I want you to know. That's all. Knowledge is power.

And I am grateful.

I am also grateful that Maggie at healthline.com sent this link to their page of "14 Inspiring Breast Cancer Quotes" which are great for all cancer survivors!

charis!

Wednesday, January 11, 2012

God Is Not Our Enemy; Death Is

I got my first real taste of "death" at 13. My aunt, my most favorite person in the world, died of brain cancer. Right before her 32nd birthday. She left behind my uncle and two young sons, ages 2 and 5 at the time. Sure, family members had died before her. But they were "old" and I really didn't know them well. Not Lou. She was young and vibrant. Everybody who knew her loved her. She was one of those rare souls that found something good in everyone and would point it out for all to hear. I remember spending time with them when I was 11 and some neighbors from their apartment complex came visiting. Not only did Lou tell all these strange adults that I wrote poetry, she also beamed as she told us all that one of the other ladies in the room made all her own underwear. The lady glowed at the compliment! I still remember being astounded, and embarrassed, at learning women did that. Mostly, I can still see Lou's face as she lifted her friend's skill up. I can still see her friend's glow, too.

Lou was actually my aunt by marriage and a much-adored daughter-in-law by my grandparents. Her illness hit us all hard, to say the least. I took for granted that God was going to heal her and not let her die. I was so sure that God would not let her die, that I, as a preteen, didn't pray too much for Lou because I knew she was just too special to let anything happen to. And then word came that she was in the hospital and "things" weren't looking good.

That's when my prayer life kicked into gear. But my prayers were more like orders mixed with "I knows."  I knew that even if it got right to the last second and she was at death's door, that God would yank her back and she would live. I knew God would perform that miracle. There was no other possible scenario in my mind.

But it was that impossible scenario that happened. Lou did die. She did leave behind my uncle and two young sons and a heartbroken family. She did leave me.

And I thought God did, too. What really happened though, is that I left God.

For four years, from 13 to 17, I was livid with God. Oh, I still went to church and was still very active in UMYF, but I was also the world's biggest hypocrite. People saw one Carol, God saw quite another one. I even had a couple of months right after Lou's death that I told God I was a Buddhist because Buddha wouldn't have let Lou die. After two months even I could see the foolishness in that. So my "prayers" went back to:

"Why Lou? Why God? How could you, God? You were supposed to heal her, God." You get the drift. I would lock myself in my room and cry as I had it out with God. The fact that I'm still here after railing at Him for four years is proof of His graciousness and that He can handle our emotions and questions and not strike us dead because of them.

Over time my prayers evolved into "Why 'death', God? Why do people die? Why not do away with death? Why death?" Still the tears. Still the anger. Still the disbelief that this great and loving and all-powerful God that I had been taught to believe in wasn't Who I thought He was. Somehow "great" and "loving" and "all-powerful" just did not mesh with this God who didn't stop death and particularly didn't stop Lou's death. Those adjectives didn't fit on a God who didn't stop death but allowed it. Those adjectives fell off this God that I was now praying to.

That's a scary place for a 17 year old girl to find herself in. Yet that's where I was. It's where God was too.

It was a summer's day. I don't remember the exact date. I was 17 and in my room. My Mama was out in the backyard. I could see her through my window. Nobody else was home. I was in the midst of one of my "Why death, God" prayer sessions and crying. And I heard this voice. It wasn't coming from within but coming beyond me but right there with me.

"Be quiet, Carol. I've listened to you for four years. It's your turn to listen to me. I don't bring death. Satan does. It's up to me to bring something good from death."

I realize that people who have problems with the existence of "Satan" will have problems with that. People who have problems with the idea that something "good" can come from death will have problems with that. But that's what the Voice said and I can still hear it today. If nothing else, wrap your mind around the idea that God doesn't bring death. Death is God's enemy.

While the Voice became silent, memories flooded my brain. I recalled conversations I had overheard about Lou. God had been with her all along. God had been working out good on her behalf all along. God had always had the upper hand. Not brain cancer. God answered all our prayers when He took Lou's hand and told her to come with Him and that she stop fighting and, instead, enjoy peace and health.

That's when my life and relationship with the Lord changed. It took on a new life and actually became a "relationship." That's when I knew, knew, God is real and He's not at all like I expected Him to be. He doesn't cater to me nor bow and scrape to my demands and mold Himself to fit my understanding of things. He calls me to grow into His perspective and grow in understanding where He is and how He moves in this very imperfect world filled with very imperfect people with very imperfect bodies that are not immune to what this world can throw at them. It began my growing interest in death. It's going to happen to me one day and I want to understand it as best as I can from God's perspective. I no longer shrink back from the face of death, nor run from it. I no longer see it as "the end" or as a "no" from God. It is  that passageway that we must take to move from this life into that place God prepares for us that is perfect. It is God's ultimate "yes" to us and "no" to all that this world destroys and kills in and around us.

But it is still an event that I don't want to endure to get to heaven. It is still that journey that I don't want to take until I'm 120. Maybe not even then. It's still something we pray against and, rightfully, get upset over and cry over. It still derails faith. It's still the enemy.

A retired Methodist bishop who died from cancer sent word that he wanted prayer as he faced death. He wasn't scared of death. He was scared to die.

Many of us have witnessed the death process and it's not pretty. And it should never be something that happens to a young person. But it does. Every day. Worldwide. It should never be something that happens to children or to a parent of young children. But it does. Every day. Worldwide.

Several years ago, one of my best friends, suddenly found herself in the hospital, at death's door and was diagnosed with a rare and potentially fatal disease. Her three children were young and still at home at the time. When she recuperated, we were talking about it and she was pondering "Why she didn't die. Why did God let her live? What was she supposed to do with her life?" I said that she was needed; she had three young children who needed her. She looked at me and said, "Carol, women with young children die every day. Why didn't I?"

Those impossible scenarios happen everyday, worldwide, to people we don't understand them happening to.

I occupy space in melanoma world. I also occupy space in the world as we know it. And, as do many of us, I occupy space in cyberspace. These worlds collide. But I also have my heart and eye focused on a space beyond this limited one. I can find myself in a difficult place when all four collide.

A pastor speaks hope into hopeless situations. But we also have to speak hope into lives and worlds that are moving from this known world into the largely unknown realm where God reigns supreme over a world that doesn't know death because entrance into that place is gained by dying and never dying again. God is in control over Earth, but Earth is the place where death and pain reside.

And death and pain are never good neighbors in this planet we share. They leave messes and destruction and they don't care who you are or how old or anything at all about you. They hate. They inflict. They are the enemy and they lie because they'll do their dirty work in such a way that we'll often blame God.

Wonderful people will die today from melanoma, other cancers, other horrible diseases, accidents, natural causes, violence, war, and forces of nature. Many will be people of faith; many will not have known faith but are still known by God. Many will be people who were prayed for and over. They will die. God will be blamed. God, You could have... God, why didn't You?....God, I prayed and believed and said in Jesus name.....God, I said and did all the right things and melanoma won. Cancer won. Death won. God, it's not fair!

And our turn will come and that won't be fair either.

Death is not fair. Pain is not fair. Life is not fair. They aren't truth, either.

And while it may appear that they win, in truth, they never do.

But God is neither death nor pain.

God is "Life" in the truest and most eternal sense.

God is always fair, good, and on our side. We just may not understand it.

God Is Truth and when we know the Truth, we are set free.

And God wins. God always wins and God always has the last word and it's a Living Word and it's an Eternal Word.  Always. He's God. Not death, Not pain, Not unfairness. Not melanoma. God.

When confronted with the pains, deaths, and unfairness of this life, don't listen to your enemies. Death, pain, and unfairness have done you no favors. They have destroyed and killed. They are not your friends. But they are part of this world and this life.

They are not part of the next. They cannot and will not follow us or our loved ones through those Pearly Gates.

Hallelujah. Be grateful.

Tuesday, January 10, 2012

And God Smiles

Sometimes God seems to divinely beam on my day. This has been one of those. I'm pretty sure I've heard a hearty chuckle, too. Ahhhhhhhh! I've been redeemed and life is good.

I had my eval meeting this morning with my District Superintendent. I like him. He's a good man and a great DS. He's seen it all I'm sure, as he's been in the ministry a mighty long time and was called out of retirement to fill this DS-ship until the end of June. The last time he saw me was just last Thursday at a district meeting. I would love to say I made a jack-donkey out of myself at that meeting, but I don't want to be responsible for an uprising of jack-donkeys feeling the sting of that slap. When I say "he's seen it all," I mean it. This is the write-up of that "historical" meeting.

Being the penitent preacher that I am, after I wrote that in an effort to say to other melanoma people, "hey, this stuff happens and it will be OK," I emailed my DS. I sent him the link to that post with my deepest apologies for my behavior. All of that happened Thursday.

I never heard a word from him. Today's Tuesday. Do the math; that's a long time to be left dangling from a hook while looking forward to today's previously scheduled private meeting. I didn't know what kind of reception to expect. I went ready to take my lumps. I had them coming. Plus, I knew he wouldn't spend our entire 30 minute meeting dishing out those lumps. I had stuff I had to discuss with him and he had stuff he had to discuss with me. After all, it was an evaluation meeting. I figured after my outburst last week, he had a lot to evaluate!

And God smiled. So did my DS.I received a gracious, warm welcome. And it was for real. He asked how I was and I told him today was a good day so far. That was the closest we came to discussing anything that could be perceived to be related to last Thursday.  Because I was 15 minutes early and we started early, what was slated to be a 30 minute meeting lasted almost 45 minutes. And it was a fabulous meeting. I went with an issue and hoped for at least one good, doable idea that would bear fruit. I left with two and see great potential in each.

We laughed. We talked. We got serious and discussed and planned. He didn't hold anything against me. Whatever he ever thought, he had let it go. Genuinely. I experienced undeserved, unmerited, unearned grace. And I felt God beaming and I saw His eyes in my DS's.

God and I had a great drive home and I've felt like I've been basking in His glow all day. That's an amazing feeling.

All this to say, even our worst moments can be redeemed, forgiven, moved past, let go, and be touched by grace. We can come to expect that from God. We neither usually expect or often experience it from others. And, how often do we extend it? Yet, we all have those horrible moments that need a touch from Grace.

Grace changes everyone and everything touched by it.

God smiles.

The DS smiles.

I'm positively giddy.

And I sure am grateful.

(I posted this on Facebook, but I want to share it here too: In the course of our conversation, he told me of a recent meeting with another colleague and the colleague tells him this true story: He has a woman in his congregation, three weeks away from her 100th birthday. He goes to see her and she tells him, "I'm almost 100 years old. All my family and friends have died. I'm the last one and if I don't hurry up and die soon, they're going to all think I've gone to hell!")

Sunday, January 8, 2012

I Love To Tell The Story

It means so much to me. That's the story of how I came to be who I am. As a dear melapal said recently, "if they don't know the MELANOMA ME they don't know the REAL me."

As I approach another year, it strikes me that "my story" post is over a year old. I use that blog post to introduce myself every so often, on Melanoma Prayer Center and it's not the full story and it doesn't take into account the past year. There are other bits and pieces scattered throughout some other posts, but I think it is time. Time to pull it all together and fill in missing pieces.

(Since writing this post, I've also written this one with more updated material about my life).

For a kid, I lived in a fairly enviable part of town: across the street from Conway's only swimming pool, the ball field, and the Woman's Club Building where many teenage social functions were held. (That's Conway, NC, so as not to confuse anyone who might automatically think of the "other" Conway. Which, there are actually eight other Conways).

Born in late '59, I didn't take Johnson's Baby Oil bottle in hand until at least 1969. But once I had it, I knew how to use it and use it I did. I used it in my big back yard, at the pool, and at the beach. Being brunette, I tanned; rarely burning. But there are roughly three times I can recall going into super-broil mode. I burned. I didn't know.

Somewhere in my later teen years I began paying attention to talk that my maternal granddaddy had had several skin cancers removed. Sometimes I heard the word "melanoma." I also got it in my head that cancer, like some other stuff, skipped a generation which meant I'd be a prime candidate for it. I knew I didn't want it, even though I really didn't know what it was. I was somebody who knew what "cancer" was and did because a month before turning 13, my favorite aunt and person in the world died of brain cancer. I had a healthy respect for cancer and I wanted nothing to do with it, skin or any other kind. So I pretty much stopped laying out all together, except for our annual family vacation to the beach and I wanted to impress teenage beach bums. I had a killer figure back in the day, what can I say? But by then, I owned sun tan lotion. Remember that stuff? All brands smelled like coconut.

It was somewhere in my later teen years that I vividly remember my parents, particularly my Mama looking at this mole I had on my upper left arm. She hated the looks of it and nagged me incessantly to get it removed because she worried that I'd "have trouble with it one day." Again I'll refer you to that post instead of rehashing it.  I think it's worth the read. But then again, I'm prejudice!

I'm going to assume that you've read my post The Big "C" Is Not "Candy" and I'll fill in the three years since my diagnosis.

Long story short: melanoma me, aka, real me has been NED ever since. So far, there's no evidence of disease. You might want to read Where Is The Peace of Mind? for my personal melanoma stats and a little more of my story. And, for good measure Skin Cancer and Melanoma for Dummies.

I've learned a lot, met a bunch of wonderful people, shared stories I wish we didn't have in common, become something of a melanoma awareness advocate, begun Melanoma Prayer Center and Melanoma Grief Chapel, am planning to participate in an AIM at Melanoma Walk in Charlotte, NC in November, and become a Granny to a little granddaughter who will turn two this week and is the delight of my daughter and son-in-law and all of us! I've moved to a new church since this melajourney began! My son's a senior in college! Hubby and I celebrated 32 years of marriage this past November!

In other words, life has moved on. As it should. It has its routines. As it should. It also has its surprises. As it should. But now I know.

I know what I'm talking about when it comes to melanoma. I know that those few burns I got as a teenager set a stage for melanoma and I had no idea. All it takes is one. ONE. 1. Couple those burns with a family history, and that stage gets bigger. Throw in that blasted mole which really did turn out to be "trouble" with a capital "T" and we're in River City all over again. The stage takes on cinematic proportions. Unfortunately, no Music Man here. I wish! Nope! Beast moves in and he doesn't sing and dance, but he sure knows "trouble!"

Now I know what cancer is about and I was right, I don't want any part of it. And it's too late. But it's not the sum total of me. I am more. A lot more. And so is everyone I know with it. But it is part of who we are and it does color everything about us. Seriously, if you don't know the melanoma me, you don't know the real me.

The real me wants people to listen when I speak and read what I write. The real me wants people without melanoma to do that. All too often we in melaworld sing our songs with the choir to the choir. We know our songs!!!!!!!! We want those of you with skin but without any kind of skin cancer (which melanoma is so labeled), to pay attention to us, learn from us, act on what we say, and live so that our story doesn't become your story. We don't want you in our choir! We don't want you in our playpen. Call us selfish but we don't want you clogging up our doctors' offices and standing in line in front of us. We don't want to see your smooth face at the cancer clinic. The beast is ours and you can't have him.

The problem is, instead of finding us to be voices of experience and listening, many tune us out and will become intimately acquainted with the beast. Maybe die arm in arm with him. You won't like it. I promise. Most people with skin don't have a clue what skin cancer is and particularly what melanoma is and that cluelessness is deadly. And it's on the rise and hitting people younger and younger. It's a disease that disfigures before it kills. It's costly.

The real me lives with watching society around me not know. The real me knows melanoma isn't just skin cancer. The real me knows that skin cancer is cancer. The real me knows that you can't just cut melanoma out and be done with it. If you have that attitude, you also have a beast laughing loudly at you.

The real me lives with watching society act like one big ostrich that has a huge head in the sand with a big rear sticking out. Not a pretty sight at all. We tell that ostrich not to tan, either in the sun or in tanning beds, because no tan is worth dying over, and society acts like a spoiled brat throwing a temper tantrum. Society sticks its collective fingers in its ears and says, "lalalalalalalalalala" while we talk. We tell walking pieces of leather, and I don't mean "cows," of damaging rays and they don't understand that we're talking not only to them but about them. Society doesn't understand that "tan" may be sexy, but dead ain't. Society doesn't get it. Until they, one by one, do indeed, get it. Melanoma.

And they have to readjust their idea of who they really are and the melanoma them is the real them. And the vicious cycle continues. And we'll be here for you because we really aren't selfish.

That's a Reader's Digest Condensed Version of my three years. I've learned. I've grown. I've become a much better "Carol" than I've ever been. I've learned the value and preciousness of life. I've grown in my relationship with God in ways I didn't know a person could. My old priorities have been scrapped and new ones brought to the table. I like this table. Scripture, particularly the Psalms, have taken on new meaning in my life and helped me with this journey I'm on.  This real me would not have been possible without melanoma becoming part of me. Despite my fears and panic attacks, I'm actually a much more peaceful person. More loving. More generous. More cynical. Softer and tougher at the same time. I cry more and laugh louder. I apologize easier and take a harder line. I'm a bag that's been shaken up and the contents have yet to settle. They probably never really will. I'll always be that box that claims to weigh one amount but it's buyer beware. That's me. Huh?

I'm a contemporary Christian music fanatic. I love to crank up the volume and sing along. One of my current favorite songs challenges me to "just set your sail and risk the ocean there's only grace." That's where I am now with melanoma. The real me is setting my sail and risking the chaos. I've never been a risk taker in my life. I've learned I really will get only one life so I better make it count. But I've also learned the grace of God will never leave me. In this life, through this life, and into Eternal life. The song is Sometimes by the David Crowder Band.

One more current favorite helps me cope and helps define this new real melanoma me and that's Kristian Stanfill's Always. Here are the lyrics:

My foes are many, they rise against me
But I will hold my ground
I will not fear the war, I will not fear the storm
My help is on the way, my help is on the way

Oh, my God, He will not delay
My refuge and strength always
I will not fear, His promise is true
My God will come through always, always

Troubles surround me, chaos abounding
My soul will rest in You
I will not fear the war, I will not fear the storm
My help is on the way, my help is on the way

Oh, my God, He will not delay
My refuge and strength always
I will not fear, His promise is true
My God will come through always, always

I lift my eyes up, my help comes from the Lord
I lift my eyes up, my help comes from the Lord
I lift my eyes up, my help comes from the Lord
I lift my eyes up, my help comes from the Lord
From You Lord, from You Lord

Oh, my God, He will not delay
My refuge and strength always
I will not fear, His promise is true
My God will come through always, always

Oh, my God, He will not delay
My refuge and strength always, always
_______________________________________________________

Oh yeah!

You better believe I'm grateful!

Saturday, January 7, 2012

They Dare To Care

There are many people who are touched by melanoma who blog. They either have the cancer themselves, are the spouses of someone with it, the parents, the child, the sibling. Usually our friends don't blog about it; generally it's either us or our nearest and dearest. Those who are most directly affected.

These blogs take various forms. Some come complete with pictures, some don't. They all have one thing in common:

They are written by people who dare to care.

One word about this: these are blogs that are readily available to anyone online. These are not on Facebook, though many of us DO have Facebook sites. Those of us who blog and are also on Facebook will usually have either links to our FB pages or the FB badges of our pages.

You will see the links to my Facebook pages in the upper right corner of this blog: Melanoma Prayer Center and Melanoma Grief Chapel.

Below is a list of blogs about melanoma. The list will be incomplete, not by choice, but because new ones are coming online regularly and it's hard to keep up. Also, being one person, I simply don't know about each and every one. Please add to the list. I thought it would be useful to have a handy list in one place to reference.

The first three are listed together because, together, we call ourselves "Power Rangers" and I don't want to break up the group. We are, Chelsea Price, Al Estep, Rich McDonald, and myself. We'll be participating in an AIM ay Melanoma Walk in Charlotte, NC November 17th and invite you to join us. Now, for those blogs:

Adventures With My Enemy...Melanoma by Chelsea Price

Black Is The New Pink by Al Estep

Hotel Melanoma by Rich McDonald

Tan Today, Tumors Tomorrow by Jill Sizemore. Her husband, Eric, died August 3, 2011.

Prayers for Jen by Jen

Melanoma Sucks by Melissa

My Journey on Eagle's Wings by Meredith Legg

Jillian's Journey with Melanoma: A Mother's Story by Susan Hayes

SMelanoma Stinks by Michael Alan Brockey. He died November 18, 2011.

Dodged a Bullet by Carolyn Myers

It's Only Melanoma by Becca

Peace, Love, & Melanoma by Lisa

Melanoma Wife by Mindy Anderson

Pale Skin Is In by Tina and Todd Sullivan. Tina died July 22, 2011.

MelanomaGirl by Andrea

Melanoma Research Foundation Blog

AIM At Melanoma Physicians Blog

Traci's Fight by Jason

My Journey Fighting Melanoma by Paul Hummel

Miss Melanoma: The Official Site for the Fun Side of Cancer

The Melanoma Blog by Dr. Lynn Spitler, Director of the Northern California Melanoma Center

Linda's Melanoma Journey by Linda.  Linda died March 9, 2009.

Em and Michael's Blog by Emily and Michael McAuliffe

Melanoma Madness by Lynn

Melanoma Updates by Dr. Dr. Bezozo, President and CEO of MoleSafe USA

My Ocular Melanoma: Rob's Story by Rob Lee

2 Battles with Melanoma in 28 Years by Jessica Rogowicz

Club Melanoma by Darryll

Alice In MelanomaLand by Dannette

My Journey with Melanoma by NicholasThornburg

Chaotically Precise: Life, Love, and Melanoma by Les

STRONG ENOUGH by Christina

Embracing My Own Glow 

Mommy's Kicking Cancer's Ass by Kelly

Safe in the Sun: From Heel to Healed: My Melanoma Survival Story by Catie Goodman

Pretty in Pale by Katie

Glenna's Blog by The Glenna Kohl Fund for Hope 

Prayers for Spencer by Trey Styons

Eye On Melanoma by Suzanne Lescure

The Skin I'm IN...Shining The Light On Melanoma by Alicia B

Melanoma and the City by Erin Youngerberg

E-Nevus Notes by the Family of Evan Coleman

Life's A Beach by Kerri Pierce

Sounds Like Life To Me by Kisma

Just Another Bump in the Road by Jennifer Martin

Your Tan May Be KILLING You... by Donna

32 with Melanoma by Darrell

Melanoma Mom: My daily fight against metastatic melanoma by Jamie

Life with Melanoma Video Blog by Kelsey(this links to Kelsey's youtube channel)

The Ogler by Peter Ogle

Alli's Equilibrium by Alli

Alisa by Alisa and Josh

Melanoma Muppet: No one loves your life more than you do...advocate for yourself by Lynn Luckeroth

Madeleine's Blog by Madeleine

Melanoma Goddess by Samantha Hessel

Respect the Rays by Timna Understein

My journey with defeating stage 3B Malignant Melanoma video blog by Donna M. Piunt

Living with Melanoma by LuAnn Marshall

Light Skinned Mother by Anjannette Figueroa-Bess

Mel with Melanoma by Melissa 

My Shovel List by Miranda Parker 

Melanoma: Back to life after stage IV by Strong Steph 

beyondmytan  

Dream.Believe.Win by Jason Hill 

The Melanoma Ripple Effect by Jonathan Hayes 

NashVegasMom by Amy Willett 

Rebekah's Randomness by Rebekah 

melanomathletecyclist by Nathan Jones 

My Team Vs. Melanoma by Sandy Armstrong DePaolo

my mountain called melanoma by jolainajo

Abnormole by Penelope 

Mission "Melanoma" by Pam Bush 

Me & My Unwelcome Visitors | Tales of my battle with cancer by Ben Edge

The Bottenberg Family by Braden and Andrea Bottenberg 

Letha's Happy Hospital Funtime Blog! by Letha Rodman Melchior  
 
¡Mela-NO-MAS!  by Martha Bishop 

The Lunsford's Melanoma Journey by Bennie and Janet Lunsford

Trusting His Plan by Sandra

Kathi's Melanoma Journey...A Walk In Faith by Kathi Bailey

Melanoma NO MORE by Donna Pearce

Taking it One Day at a Time by Mama Steg

Dr. Mo Iowa by Dr. Mo Milhem, a melanoma and sarcoma specialist in Iowa

Holy Moly, Melanomy: My LIFE With Melanoma by Amber Vasco

Give a Smile Today by Stacie

Letha's Happy Hospital Funtime Blog! by Letha Rodman Melchior

Amazing Melanoma Mom by Stephanie Keffer

My "Big C" is Christ, cancer is a little c by Kim Andrews

A Day In The Life of A Daisy by Wendy Marie

Melanoma Mama by Donna Helm Regen

Marry Mint by Amanda

melanomathletecyclist by Nathan Jones

My Melanoma Triumph by Adrienne Lotton

The Cupcake v. Cancer by Summer Heath 

Waiting for Happy by Kristy Bolte 

This Little Light of Mine by Laura May

You may also search this particular blog, Attitude of Gratitude for "melanoma" as many of my posts are about this disease.

Read our stories. Look at the pictures and watch the videos of those who have them. Real Life stories of real life people...

Who dare to care

And share

And I am forever humbled to be counted as one of them, blessed,

and grateful.

Friday, January 6, 2012

Whew! This Post Is Rated "G"

For "Genos" content. Genos, with a hard "g", is Greek for family.

Yesterday I wrote an "R" rated post. R for Real. I recounted the day I had yesterday and a not-so-pretty episode at a meeting. I really wasn't looking, at the time, for commiseration or support. I actually wrote with three objectives in mind:

1. I wanted to say, "This stuff happens, to me, to you. It's going to be OK. We all have these fears and feelings and they can come out of nowhere and when it happens to you, you aren't crazy or anything else. You're 'normal' living with an abnormal disease and this is how it can manifest." Look real hard and you won't see that spelled out like that anywhere in the post, but this is something I wanted to convey.

2. I wanted to say, "People without cancer in general, or melanoma in particular, when you see someone say or do something completely out of character and maybe inappropriate like I did and said, consider that maybe, just maybe, something's going on with them and they're out of control because they're living with something they're hiding and haven't faced. Especially if you happen to know they're dealing with some form of cancer. Cut them some slack and reach out and ask, 'Are you OK'" Look real hard and you won't see that spelled out like that anywhere in the post, but this is something I wanted to convey.

3. I wanted to say, "We're all in this together and I knew you'd understand and maybe knowing I had this kind of day will help you when you have this kind of day. You aren't alone." Look real hard and you won't see that spelled out like that anywhere in the post either, but this is something I wanted to convey.

Those were my objectives. The results surprised me.

I received commiseration and support. I received the OK to have these common fears. I was told prayers were being said for me. I was told, "It's OK preacher." I was given thanks for being real. What wasn't supposed to be about "me," was indeed, about me. The proverbial shoe was slipped on the other foot, and you know what? After I got over the surprise of the responses, it felt good. Great to be more accurate. OK, let's go for overwhelming.

I wrote a post to people I knew would understand and see themselves and hopefully help them and help those who love them understand them better. I hadn't talked to my flesh and blood family first, but my flesh and blood daughter saw it and called, not sure of what to say. My son heard that phone call and we've had our own talks. When my husband came home, I talked with him about my day and fears before he heard it from one of our children.

Talking openly and honestly with my cyberfamily opened the doors for me to talk open and honestly with my flesh and blood family. And I received much needed support from both families and it wasn't until I received that I realized how much I needed to. I needed a blessing, didn't know it, and am very grateful everyone else totally misunderstood what I thought I was writing yesterday!

I don't write this today so everyone will rush to my side with even more support. Actually, I'm the kind of person that I hope you don't. What I want you to take from this, and I'll be really clear this time and spell it out:

YOUR FEARS AND FEELINGS ARE NORMAL!
WE ALL, IN MELAWORLD, HAVE THEM!
YOU ARE NOT ALONE!
TALK TO YOUR FAMILY ABOUT YOUR FEARS AND FEELINGS!
THEY WILL NOT KNOW UNLESS YOU TELL THEM!
IF YOU DO NOT TELL THEM, THEN DON'T GET ANGRY, FRUSTRATED, IRRITATED, ETC, WITH  THEM WHEN THEY DO NOT GIVE YOU THE SUPPORT YOU NEED!
YOU ARE SURROUNDED BY PEOPLE WHO CARE AND WANT TO UNDERSTAND!
YOU LIVE WITH SOME AND SOME ARE IN CYBERSPACE: TALK TO US, USE US, LET US GIVE YOU SUPPORT; IT WILL FEEL GOOD!
WE ARE FAMILY!

And I am grateful.

Thursday, January 5, 2012

Warning: This Post Is Rated "R"

For "Real" content. No pictures to look at, but if you have an aversion to real life in the course of the day of someone who lugs a monster around with them, then, this post is not for you and you proceed at your own risk. Find something else to do with your time before it's too late.

Too late. Here you are and here we go. When I had my original melanoma mole cut out at a Duke Urgent Care in July 2008 by a wonderful PA, I knew when I went that afternoon that it had melanoma in it. I'd known for a while as it grew, became raised and black, but that day in July sealed it when it started bleeding that morning. I figured someone at DUC would cut it out, sew me up, and send a bandaged up me back to Duke campus where I'd resume my classes the next day and life forever the same as it was when I walked through the Urgent Care doors that day. Melanoma was in the mole and melanoma would be gone once the mole was removed.

For someone so smart I sure was so stupid and naive. NOTE: Melanoma preys on stupid and naive.

That's not how it turned out; that's not how it ever turns out with a mole that looked like mine did. But, hey, the PA said the tissue underneath looked good. That was good enough for me. She evidently forgot to send a memo to that effect to pathology along with the mole. Not only did a path report confirm the melanoma, but it presented numbers to the DUC staff doctor that prompted him to make an appointment for me with a Duke oncologist before ever telling me a thing. I'll spare you the rest of that particular episode, but if you want to and haven't already, you can read it here.

Fast forward over three years to today. To say I've learned a great deal about melanoma in this time span would be a gross understatement! But as I've learned a great deal, I've also remained NED (no evidence of disease). I like it that way. But I know the statistic I live under and with and it scares the mess out of me. Sorry, but the language only will get worse. That's how this day has been. Real.

I attended our district's pastors meeting this morning. It was a nice gathering and I met some new pastors to our district and all went well. We had a nice catered lunch. Most of the pastors left after lunch but some of us had to stay for a District Connectional Table meeting to discuss upcoming district events and ministries. I'm on the DCT so I stayed. All was going fine until we started discussing an event that will be made up of several workshops.

I could feel it happening. In a way. But I was managing it. I started getting ridiculously annoyed and antsy and more annoyed. Garden peas, I was a sitting time bomb and I could feel my fuse getting closer to going off. But I thought I was controlling myself. I thought I was being good. Then out of nowhere it happened. I showed myself. Or should I say, I showed someone who wasn't "me" at all.

I'm really not a witch. But to say I acted like a witch would be an insult to witches. I was a total *itch and there's no other way to say it. I was an out and out "have mercy!"

From the back of the room came a voice and it sounded like mine. And that voice, in a very irritated tone, informed the committee that the suggestion that was just put forward was unnecessary for a workshop because there was a better way to present that particular material, which I then heard that voice that sounded like mine go into detail explaining. It then informed the committee that we already had enough workshops being offered and if we kept adding on more that participation would get lower in the others. I tell you, I was a first class, A-One "goodness gracious!"

For the record, and not proudly, I did not catch myself and immediately apologize. The meeting went on and nobody knows me well enough on that committee to give me a call or shoot me an email and say, "are you OK?" To say I didn't leave a good impression would be another understatement.

And I couldn't have explained myself at the time if someone had asked me what was going on.

After the meeting was over I left. No schmoozing. I get in the car and immediately start rationalizing my behavior to God. God wasn't having any of my baloney though. So, I began telling God I was sorry I had acted that way; I was wrong. And before I knew it I was bawling and I cried half way home...35 minutes. Through traffic. I have to play the "C" card and I hate that. I hate the hell out of it and I wish my vocabulary could find a nicer word for this, but it can't. Hence, the "R" rating.

See, I have a dermatology appointment at Duke later in February with the top melanoma derm there. I also, for the first time, have some places I think she'll want to remove. And pathed. And I think some will come back as melanoma-positive. I have a gut feeling that it's returned. I hope I'm wrong, but I've had derm appts before since July 2008 and I never worried about any of them.

As I bawled and navigated, I gave voice to my fears. For the first time. I had not admitted to myself or to God that I'm scared. Petrified would be more like it. Garden peas and more garden peas. This time I'm not the same stupid, naive person I was three years ago. This time I know what I'm dealing with, if it has recurred. This time not only am I not a happy camper, I'm a scared camper. And I know "fear" is an enemy just like melanoma is an enemy. It can come on us, bury in deep, and then jump out and reveal itself at the worst moments.

We live with this permanent fear of recurrence. As long as things go well, we can hide it, put on our best adult games faces and move on. But we know what we live with. Fear is one of those things we can try to hide, avoid, pretend it isn't there, or act like other people may get scared but not me.  Not me. I can't get scared, admit to it, and let it show. Not me. People don't expect that from me. I'm the voice of hope and faith.


Today the voice of fear sounded forth at my meeting but it wore my face. Rats. Not good. But it is what it is and this is what it is and I am who I am.

People who live with melanoma will understand. There are times we simply are not ourselves and those times can come on us suddenly and from out of nowhere. We aren't crazy and we aren't looking for sympathy or odd looks or melodrama cracks about our behavior. We hate playing the "C" card. And worse, we hate playing the "M" card. Most people don't know how to play that hand.But that's the hand we have to play.

When I first started blogging about my melanoma and began Melanoma Prayer Center, and later Melanoma Grief Chapel, on Facebook, I promised myself I would be totally honest with people. And I have been. Honesty isn't always welcomed, but there are truths about our human existence and the world in which we live and the disease we fight that demand total truth.

This is what my day today looked like and while it was far from perfect, it's redeemable. Any talk about my outburst will eventually be replaced by other, more interesting events, in my colleagues' lives. At least that's what I'm hoping!

Something else happened on my drive home. With just me and God in the car and tears running down my face. I had my current favorite CD playing in the background, Chris Tomlin and Passion's "Here For You." Eventually, the songs began to cut through my voice and I was able to hear about and be reminded of God who IS my refuge and strength. God's love which is a sea without a shore that I can get lost in. An urgent plea to not be afraid but to set my sail and risk the ocean because it's only grace.

And I relaxed in that sea while feeling my fears drown in His grace. Whatever my February appointment holds in store is being held by God.

Do you know that "grace" come from the Greek word charis?

So does "gratitude."

Tuesday, January 3, 2012

Walk On...For A Cure...November 17

So, I wake up this morning and Elvis is serenading me, singing "Walk On" and he keeps singing, over and over, "And you'll never walk alone!" It has to be the song because (duck Carol) I've never been an Elvis fan. I know. That's not something a sane person admits to, but I think I'm strong enough to handle all the cybertomatoes being flung my way right about now.


I hope you're playing that and listening as you read, because folks, there's going to be a WALK and we're walking with a purpose and we're walking together! We're walking for a cure! I don't think many people fully understand what a cure for melanoma would mean to the cancer-world at large! But we're walking with that hope in our hearts...man, sing it Elvis!

Mark your calendars for Saturday November 17th, Freedom Park in Charlotte, NC! I'm so excited I can't believe it's happening. My friend and co-conspirator Al Estep, aka Black Is The New Pink has blogged the history and future of the walk, so I won't be redundant but will steer you to what he writes.  AIM has put up an official page where you can get more info, register, and donate.

This is already shaping up to be a blast! Anne Stokes Bowman, The Charlotte Chapter of AIM at Melanoma Chair, is busy for the second year in a row organizing this and people are already planning to come from beyond North Carolina and Virginia to participate, and if they're like me, they're coming to meet, get this: Al Estep, writer of the  Black Is The New Pink blog and Facebook site by that name; Chelsea Price, writer of the Adventures With My Enemy...Melanoma blog; Rich McDonald, coming in from Colorado and proprietor of Hotel Melanoma. Susan Visch Hayes/Jilly's Jems writer of Jillian's Journey with Melanoma-A Mother's Story, and Jennifer Marie Christie writer of Prayers for Jen will also be there! Our list is growing and includes Paul Hummel writer of My Journey Fighting Melanoma. Not only will I get the chance to meet them, but we'll walk together and we'll walk with you and for you. Anne has also arranged for a dermatologist to give FREE skin screens!

Being the fun group that we are, we spent a while last night (as I write this), on Facebook, making big plans for that Saturday night after the walk. Plans that include table dancing (them) and singing Hotel Melanoma's greatest hits (me) as I down plenty of black coffee and they down whatever. As Al said, more details will follow and we'll all work to keep you informed. Read about our plans for our Saturday Night after party! Since writing this I've written another post besides the one about our after party linked to above. For now, save your pennies, make your plans to join us, and dare I say it: Get ready for Saturday!



SATURDAY Walk!
SATURDAY Walk!
SATURDAY Walk!
SATURDAY Walk!

Gonna keep on walkin' till we find a cure
Our Saturday walk, Saturday walk
Walkin' to the mission in our
heart and soul
Our Saturday Walk, Saturday walk
IIIII just can't wait,
IIII got a date

At the good ole rock and roll mole
show, I gotta go
Saturday Walk,
Saturday Walk
Gonna rock it up, roll it up
Do it all, have a ball,
Saturday Walk,
Saturday Walk
It's just a Saturday Walk
It's just a Saturday Walk
It's just a Saturday Walk

Gonna walk with my friends till the
day is thru
Our Saturday Walk, Saturday Walk
Talk up all the big things we’re
gonna do
Our Saturday walk, Saturday Walk
IIIIlove them so
III I'm gonna let them know

*repeat

SATURDAY WALK, SATURDAY WALK,
SATURDAY WALK, SATURDAY WALK,
It's just a Saturday walk
It's just a Saturday Walk,
IT's just a Saturday Walk,
It's just a Saturday Walk,

And I am grateful!