tag:blogger.com,1999:blog-3204500555735072072024-03-13T08:21:05.797-04:00Attitude of GratitudeWhen I started this blog I was melanoma stage 3b Methodist pastor in the NC Conference. Now I'm advanced stage 4 and stepped down from the pulpit in Sept 2015 when mel hit my brain. Duke sent me home July 13, 2016. I almost died that Aug. Yet, I'm better than ever expected! And I'll be back in the pulpits of FOUR churches starting June 23, 2019! God is soooooo GREAT! I blog about melanoma often but I also write about my family, faith, and gratitude to God.Carol Taylorhttp://www.blogger.com/profile/17930711637707595995noreply@blogger.comBlogger285125tag:blogger.com,1999:blog-320450055573507207.post-3331592546607231672017-01-06T19:12:00.001-05:002017-01-06T19:14:11.813-05:00Please Read! Especially If There’s A Child In Your Life!<!--[if !mso]>
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<br />
<div align="center" class="MsoNormal" style="text-align: center;">
<br /></div>
<div class="MsoNormal">
<a href="https://4.bp.blogspot.com/-73guIKE71Eg/WHAx014hxWI/AAAAAAAAAO4/K3nERRfHnIwcqXeu1BlIkEE2H-hLGrQJACLcB/s1600/God%2Bbless%2Bthe%2Bchild2.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://4.bp.blogspot.com/-73guIKE71Eg/WHAx014hxWI/AAAAAAAAAO4/K3nERRfHnIwcqXeu1BlIkEE2H-hLGrQJACLcB/s1600/God%2Bbless%2Bthe%2Bchild2.png" /></a><span style="mso-no-proof: yes;"><span style="mso-spacerun: yes;"></span>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.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-no-proof: yes;">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. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-no-proof: yes;">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.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-no-proof: yes;">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. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-no-proof: yes;">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.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-no-proof: yes;">Remember, this on the Internet…not
Facebook. They can spread this garbage anywhere and, apparently, there’s
nothing we can do about it.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-no-proof: yes;">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.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-no-proof: yes;">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.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-no-proof: yes;">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.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-no-proof: yes;">We want to educate others. We
NEED to educate others about our diseases and conditions. In articles, on
Facebook, any way we can.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-no-proof: yes;">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!</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-no-proof: yes;">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.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-no-proof: yes;">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.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-no-proof: yes;">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.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i style="mso-bidi-font-style: normal;"><span style="mso-no-proof: yes;">charis</span></i></div>
<div class="MsoNormal">
<span style="mso-no-proof: yes;"> </span><span style="mso-no-proof: yes;"></span>
</div>
Carol Taylorhttp://www.blogger.com/profile/17930711637707595995noreply@blogger.com0tag:blogger.com,1999:blog-320450055573507207.post-11690501425033213842016-12-14T10:33:00.002-05:002016-12-14T10:35:27.374-05:00Beyond 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.<br />
<br />
Or was it when my intense journey filled with blessings and miracles...painful as they were...began?<br />
<br />
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 quickly...my 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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
I don't <i>count </i>my blessings. Oh no, I <b><i>live</i></b> them.<br />
<br />
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.<br />
<br />
The melanoma is still there doing what it's doing and I know it.<br />
<br />
God's still here and doing what He's doing and I know it.<br />
<br />
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.<br />
<br />
I'm living a life of blessing and I know it. I cannot and will not complain.<br />
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I never in a million years thought I'd live the life of a miracle. But I am and I know it.<br />
<br />
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 <b><i>be </i></b>one!<br />
<br />
Thank You, Lord! Hallelujah! Praise the Lord!<br />
<br />
Merry Christmas and God bless us, everyone!<br />
<br />
<i>charis</i><br />
<br />
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!Carol Taylorhttp://www.blogger.com/profile/17930711637707595995noreply@blogger.com1tag:blogger.com,1999:blog-320450055573507207.post-78396439651001620702015-03-23T08:02:00.000-04:002015-03-23T08:05:53.439-04:00Melanoma 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.<br />
<br />
I have learned that I really am <i><b>not</b></i> 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 "<a href="http://hotelmelanoma.blogspot.com/" target="_blank">Hotel Melanoma </a>Chaplain Boss" (or "Bossy" for some).<br />
<br />
That would be me. And I'm good with that.<br />
<br />
So! Listen up!<br />
<br />
Melanoma is cancer. It is not <i>"just"</i> 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 <b>ARE</b> skin cancer...well, they aren't <i><b>just</b></i> 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!<br />
<br />
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.<br />
<br />
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 cancer...it'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!<br />
<br />
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.<br />
<br />
Scarring, disfiguring, deadly, no-cure-right-now-exists, melanoma.<br />
<br />
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".) <a href="http://www.aimatmelanoma.org/getting-a-diagnosis/find-a-melanoma-specialist/" target="_blank">Aim at Melanoma maintains a list of melanoma specialist oncologists in the USA and Canada.</a> If you are outside these two countries, check with the melanoma foundation in your country to find a specialist. <br />
<br />
If you have melanoma, find support. Plug into the online community. We are thriving on Facebook. If you aren't on FB, <a href="http://www.melanoma.org/" target="_blank">Melanoma Research Foundation</a> 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. <br />
<br />
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...<br />
<br />
Enter Chaplain, exit Boss.<br />
<br />
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).<br />
<br />
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.<br />
<br />
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!). <br />
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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.<br />
<br />
Excuse me a minute while I get out my tiara and pretend that I really am Queen of Melanoma World...<br />
<br />
Do all this because I have so decreed!<br />
<br />
<i>charis!</i>Carol Taylorhttp://www.blogger.com/profile/17930711637707595995noreply@blogger.com0tag:blogger.com,1999:blog-320450055573507207.post-88970283983066249842014-12-05T09:37:00.003-05:002014-12-05T18:21:30.374-05:00Living In A PC WorldThat would be "Post Clark." Specifically, George Clark as there are certainly many, many other wonderful Clarks left!<br />
<br />
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?"<br />
<br />
I thought I knew.<br />
<br />
I was wrong.<br />
<br />
So awfully, terribly, horribly wrong.<br />
<br />
It hit me yesterday and it hit hard.<br />
<br />
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?!<br />
<br />
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!"<br />
<br />
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."<br />
<br />
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.<br />
<br />
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!)<br />
<br />
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...<br />
<br />
Yesterday. The season was calmed and people were gone and life resumed and it hit me.<br />
<br />
I now live in a world without my Daddy.<br />
<br />
And while it hurts<br />
<br />
I am so grateful to have lived for 55 years in a world with him!<br />
<br />
<i>charis</i>Carol Taylorhttp://www.blogger.com/profile/17930711637707595995noreply@blogger.com0tag:blogger.com,1999:blog-320450055573507207.post-19399572249936820532014-09-13T10:22:00.000-04:002014-09-13T10:22:43.350-04:00Catching UpIt 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.<br />
<br />
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! <a href="http://letsgivethanks.blogspot.com/2010/12/climb-every-mountain.html" target="_blank">My brother </a>and his two sons are all doing well and thriving where they are each planted. My husband is doing well, so is the drugstore and we'll celebrate 35 years of wedded bliss and everything else in November. Our two children are thriving and so is our son-in-law. And our two grandchildren are the reasons the sun rises and sets like clock-work. Our granddaughter began Pre-K 4 in August (where has the time gone?!) and our grandson is taking his first steps...watch out world! He's coming! <a href="http://warrenplainsumc.net/" target="_blank">My church</a> 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!<br />
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In my melaworld things are also happening! <a href="http://www.forbes.com/sites/davidkroll/2014/09/04/mercks-keytruda-surprise-winner-in-u-s-pd-1-inhibitor-race/" target="_blank">The FDA fast-tracked approval </a>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!<br />
<br />
Also big news is the <a href="http://www.melanoma.org/" target="_blank">Melanoma Research Foundation </a>is, RIGHT NOW as I type, sponsoring the first-ever <a href="http://www.melanoma.org/get-involved/calendar-of-events/inaugural-pediatric-melanoma-summit" target="_blank">Pediatric Melanoma Summit</a>! 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.<br />
<br />
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.<br />
<br />
God knows them!<br />
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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.<br />
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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!<br />
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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 <i>try</i> to handle what I <i>think</i> I can! <br />
<br />
Right now I am thankful for this season I'm in. God's got it.<br />
<br />
What more can I ask?<br />
<br />
<i>charis!</i>Carol Taylorhttp://www.blogger.com/profile/17930711637707595995noreply@blogger.com0tag:blogger.com,1999:blog-320450055573507207.post-55730963400005043222014-07-19T11:50:00.001-04:002014-07-19T11:50:45.318-04:00melanoma horror storiesI'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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
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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.<br />
<br />
But this is never an easy tension. Yes, melanoma horror stories abound.<br />
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However, I want to leave you with <a href="https://www.youtube.com/user/EricNJill?blend=1&ob=video-mustangbase" target="_blank">this set of videos</a>. 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.<br />
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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.<br />
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I can do no less.<br />
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If you want horror stories...look elsewhere. <br />
<br />
<i>charis</i>Carol Taylorhttp://www.blogger.com/profile/17930711637707595995noreply@blogger.com4tag:blogger.com,1999:blog-320450055573507207.post-58109420816747211342014-07-09T11:12:00.002-04:002014-07-09T11:12:58.612-04:00Be Your Own Best Advocate When It Comes To Your HealthIn 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. <br />
<br />
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.<br />
<br />
As a dear melahomey says, "No one wants me to live as much as <b><i>I</i></b> do!"<br />
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That said, and agreed with, remember: this is <i>your </i>life, <i>your</i> battle, and at the end of your days it will be <i>your </i>death whether you die from melanoma or from some other cause. There are things you need to know.<br />
<br />
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 <i>living </i>while we <i>manage </i>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).<br />
<br />
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. <a href="http://www.aimatmelanoma.org/en/aim-for-answers/path-to-getting-a-diagnosis/finding-the-right-doctor.html" target="_blank">This is Aim at Melanoma's link </a>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.<br />
<br />
Often people don't realize that there are melanoma specialists! They think any ol' oncologist will do. Or they think an oncologist who specializes in another cancer is OK. Well. No. You need a doctor who knows melanoma, who knows what's going on in the field, who can get you into the right trial for you...shoot...you need a doc who KNOWS about the current, and best, melanoma trials. I'll be painfully honest. I've lost good melahomies because they refused to see a melanoma specialist. They <i>liked</i> their onc. They <i>trusted</i> 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.<br />
<br />
If you have melanoma, see a specialist.<br />
<br />
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. <a href="http://clinicaltrials.gov/" target="_blank">Here's the go-to site for finding a trial</a>. <br />
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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. <br />
<br />
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.<br />
<br />
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.<br />
<br />
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!<br />
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You are worth it.<br />
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You matter and your life and battle matter.<br />
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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... <br />
<br />
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.<br />
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We don't get do-overs. <br />
<br />
<i>charis</i>Carol Taylorhttp://www.blogger.com/profile/17930711637707595995noreply@blogger.com3tag:blogger.com,1999:blog-320450055573507207.post-70364609987154159792014-07-07T11:24:00.000-04:002014-07-07T11:24:11.055-04:00how long to die from melanoma, Or, That Sure Ain't "Pretoria Mama with Big Booty"<!--[if gte mso 9]><xml>
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But that's how it goes when you're me. My melahomey, Donna
Regen, is currently basking in the fact that Google is having fun sending very
unsuspecting searchers to her blog. They plug in search terms like "<a href="http://melanoma-mama.blogspot.com/2014/06/sweety-mama-for-sex-in-pretoria.html" target="_blank">Sweety Mama for sex in Pretoria</a>" and "<a href="http://melanoma-mama.blogspot.com/2014/07/pretoria-revisited-shake-that-booty.html" target="_blank">Pretoria Mama with Big Booty</a>" and they get <b>HER</b>!
They plug in stuff like "how long to die from melanoma" and get <i>ME</i>!
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Unfortunately, a lot of people plug in similar search terms,
probably after they receive their very own melanoma diagnosis, and find me.
It's a natural fit, I suppose. But this gives me an opportunity to shout
something from the mountain tops. Please hear me:</div>
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A MELANOMA DIAGNOSIS, AT ANY STAGE, IS <b>NOT</b> AN
AUTOMATIC DEATH SENTENCE!!</div>
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It <i>is </i>scary. It <i>does </i>throw you into the great
unknown. It <i>is</i> a deadly, horrible cancer...no cancers are
"good" but some are more treatable than others right now. </div>
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Instead of preparing to die, prepare to LIVE! Live your
once-in-a-lifetime life to the fullest. Yes, you've faced your mortality...but
you're here to keep looking it in the eye. Don't blink. Live. </div>
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I know the statistics. I know the rates of diagnosis for
melanoma are on a dramatic rise and will continue to rise, until they level off
and then begin to decrease. I know the numbers of deaths from melanoma are also
rising. But please keep things in perspective and find hope and not imminent
death.</div>
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Over 139,000 people, in the USA alone, will be diagnosed
with melanoma this year and that's including in situ (stage 0). Of those,
76,100 cases will be invasive. Over 9700 will die from melanoma this year.
Though all numbers are on the rise, the number of deaths has, historically,
lagged behind the number of those diagnosed. Most people, either through
surgery, or various treatments, or both, will manage their melanoma. Most
people will die from something else and not from melanoma. We will never know
until we live out our days, but please stop assuming that if you have melanoma
you'll, inevitably, die from it.</div>
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As my melanoma specialist surgical oncologist from Duke told
me last year, "Most people do well with their melanoma. Now we have to
find out why that is. Why some do well and others don't do well."</div>
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I know and understand the urge to get online and find out
all we can about this disease, or any disease we're diagnosed with. But we run
the very real risk of getting bogus information and a lot of scary stories.
When it comes to melanoma, go to trusted sites like <a href="http://www.aimatmelanoma.org/en/index.html" target="_blank">Aim at
Melanoma </a>and <a href="http://www.melanoma.org/" target="_blank">Melanoma
Research Foundation</a>. There are some others, but this will get you started
on the right path.</div>
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Even then, understand that the statistics you'll see aren't
new and don't reflect what's happening in Melaland. As I write, there are some
very good trials going on that are helping my fellow melahomies tremendously.
Yervoy has been approved by the FDA, which, by itself has given many a new
lease on life. When combined with trial drugs, it is even more potent. For
many. Not every trial drug or approved treatment is working for everyone. Not
everyone who has Gamma Knife or Whole Brain Radiation (WBR) will be helped.
More and more information is constantly being learned about the role of
genetics in melanoma, and in other cancers, and research is coming up with new
treatments and many are reaping the rewards of that research (and, yes, there
is overlapping between genetics and the promising trials...I'm just trying to
spell things out without getting too technical for the newbie). </div>
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And, it's because not everything helps everyone that horror
stories abound, even today. But again, keep things in perspective. For every
horror story, there are many, many more people living positive life-stories
that bring hope. Even with stage 4 melanoma.</div>
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I don't want anyone to think that I'm downplaying the
reality of melanoma. I'm not. I don't want anyone to think I'm trying to
diminish those who have valiantly fought this disease and died from it. I'm not.
I don't want anyone to think I diminish the battle of those who are, right now
stage 4 and fighting HARD to live. I'm not.</div>
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But I DO want to say that there are many who are stage 4,
have been stage 4 for close to 10 years or even longer, and are doing well with
their melanoma. They love, they live, they work. They are a fabulous source of
hope in this world where we, often, don't think in terms of "doing well at
stage 4." Same with people who are stage 3c. They have been 3c for a long
while and are doing well with their melanoma. I'm stage 3b and have been since
2008. I'm doing well with my melanoma. So far. I know the score and I know this
disease.</div>
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And that's what I'm trying to say. Don't think in terms of
dying from melanoma. Know that can happen, and then do everything in your power
to prevent that from happening. Stay proactive with your health. Make all the
dietary changes you need to make to eat healthier. Exercise. Get all changes
inside, and outside, your body checked out. Be your own best advocate. Change
doctors if you need to. Be sure to be in the hands of doctors who have YOUR
best interests at heart and who listen to you. When it comes to melanoma, be in
the hands of a melanoma specialist...that is imperative! This is <a href="http://www.aimatmelanoma.org/en/aim-for-answers/path-to-getting-a-diagnosis/finding-the-right-doctor.html" target="_blank">Aim at Melanoma's list of melanoma specialist oncologists</a>.
Where you find them you'll also find surgical oncologists who are melanoma
specialists and dermatologists who make melanoma and skin cancer the focus of
their practice. </div>
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Give yourself every fighting chance possible. And maybe,
just maybe your fight won't be much of a physical battle. The emotional battle
will be there as this disease does work on our emotions because we never know
what it will do until it does it...or doesn't do it. And if your battle DOES
become physically intensive, know that there is help. There is real hope and
real promise. You may just fall into the number who can manage their disease
even if it means going from one treatment to another and throwing in surgeries
and various radiation methods. Don't assume the worse until the worse
happens...if it ever does. And all along the way, know there's support
available. You don't have to live with this diagnosis alone. There's a
wonderful, highly supportive melanoma community thriving on Facebook. Look me
up and I'll plug you in.</div>
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Yes, you'll meet many who are in the fight of their lives
for their lives. But they will inspire and encourage you. You'll learn many are
fighting after a season of doing well with their melanoma. You'll meet many who
are stage 4 and managing their melanoma. They're living with this disease and
not dying from it. And they've been living and managing for quite a while now.
They, too, will inspire and encourage you. You'll meet many all along the
staging spectrum. You'll meet many who have just been diagnosed, and they'll be
at every stage possible as many are diagnosed even at stage 4, not all are at the lower stages upon diagnosis. And you'll run
into fear and panic. I've been there. I understand. We all do. But we also
understand you have to have hope. Hope and faith are vital. Just as vital as
having a melanoma specialist. If you have no hope then all the specialists in
the world won't do you any good. </div>
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Cling to hope, not fear.</div>
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Live your life not your death.</div>
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Make plans for a future not a funeral.</div>
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Know the score and know scores change.</div>
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Understand statistics and throw them away.</div>
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You are not a number. You are not a "case." You
are a valuable human being and there's more to you than melanoma or any other
cancer.</div>
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Don't let any disease seek to diminish you. YOU seek to diminish the
disease.</div>
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And, don't think in terms of how long you have before you possibly die from melanoma, think in terms of how long you will live even though melanoma has a seat at your table.</div>
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And then <i><b>live</b></i>. </div>
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<i>charis</i></div>
Carol Taylorhttp://www.blogger.com/profile/17930711637707595995noreply@blogger.com6tag:blogger.com,1999:blog-320450055573507207.post-63968534127485394662014-07-02T10:15:00.000-04:002014-07-02T10:15:38.164-04:00Humor In MelalandAnd, boy, are we a funny lot, indeed! Sometimes we can forget and sometimes others don't know. We can, and do, develop a dark humor. We laugh at doctor/hospital jokes. Heck, we LIVE them! We learn that the old adage, "might as well laugh instead of cry" often is a really good policy for dealing with all the junk we have to deal with. <br />
<br />
I write a lot about our trials and attirude (which can be hilarious in hindsight). I write a lot trying to lift us up, remind us God is in our midst, and to hold out hope. Today, I'm feeling the need to remind us to laugh. It really is great medicine...and it's FREE! We don't have to haggle with insurance companies to get it! It really does lighten our souls and it makes us pleasant to be around. Life truly does have it's funny moments. Enjoy them! Don't let this disease, or any disease, strip away joy, your smile, your hearty laughter. And I advise that knowing that can be a hard place to get to after this diagnosis or after a death of a loved one from melanoma. I've been there.<br />
<br />
I've been thinking about this post since yesterday...the day after Monday...the day after this blog post hit the greater Internet: Donna Regen's <a href="http://melanoma-mama.blogspot.com/2014/06/sweety-mama-for-sex-in-pretoria.html" target="_blank">Melanoma Mama: Sweety Mama for Sex in Pretoria</a>. <br />
<br />
When I saw that I literally bust out laughing! (In the rural south where I live, we do not "burst" out laughing. WE "bust" out). I'll tell you why that's so funny. It's because <b><i>this</i></b> is the PSA Donna's known for: <a href="https://www.youtube.com/watch?v=zYzfldQ3OU0" target="_blank">it's about her daughter, Jaime, </a>who died from melanoma. Donna's known for her work in Melaland doing what she can so that no other parent visits their child in a cemetery because of melanoma. She's simply not known for being any other kind of "Mama." She's <i>"Jaime's Mama," </i><u><b>not</b></u> "Sweety Mama!"<br />
<br />
I choose to see that as God's sense of humor shining through. That "sweety mama for sex in Pretoria" was an actual search term that, for some really unsuspecting person, prompted Google to suggest one of Donna's posts. ALL of her posts touch on "melanoma" in some way. Not "sex." Not "Pretoria." Melanoma. She certainly doesn't bill herself as "Sweety Mama." And yet, Google decided Donna fit this. I have to laugh! Donna laughed. God laughed. Hopefully her reader learned. For some reason, God led that person to Donna.<br />
<br />
<a href="http://3.bp.blogspot.com/-xOisfX8YBFo/U7QP7Knt06I/AAAAAAAAAMU/FhU6keNmK_I/s1600/men+in+black.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://3.bp.blogspot.com/-xOisfX8YBFo/U7QP7Knt06I/AAAAAAAAAMU/FhU6keNmK_I/s1600/men+in+black.png" height="200" width="149" /></a>We've got other humor in melaland that I'm thinking about. They've shared this photo often on Facebook ever since they took it last year at the Aim at Melanoma Walk in Charlotte, NC. Mark Williams and Rich McDonald (<a href="http://hotelmelanoma.blogspot.com/" target="_blank">Hotel Melanoma</a> proprietor), our <i>Men in Black</i>. <br />
<br />
We enjoy life. We don't enjoy all aspects. We don't <i>enjoy </i>this disease and all that comes with it. We don't <i>enjoy </i>knowing that everyday 178 people, around the world, die from melanoma and countless more are added to our numbers. There is much we do not and cannot laugh at or about.<br />
<br />
But we are human. And we've learned life is a gift. Everyday is a gift. We've learned to smile and keep going. We've learned that if WE can laugh, then what in the world is there to keep others from joining us in it? We've learned life is short. Even if we live to see 100 years, that's still "short."<br />
<br />
So, receive the blessing of this day. Rejoice and be glad in it for it will not come again. Make the best of it and the most of it. Live it so that at the end of the day, when you lay your head down, you can say "Thank You, God, for seeing me through today in the best possible way considering all today held."<br />
<br />
And, "Don't stop believin'!" Never, ever stop believin'!<br />
<br />
<i>charis</i>Carol Taylorhttp://www.blogger.com/profile/17930711637707595995noreply@blogger.com2tag:blogger.com,1999:blog-320450055573507207.post-72296566640588629272014-06-24T11:36:00.002-04:002014-06-24T13:55:24.988-04:00afraid of melanoma statsHELLO! Show of hands for all who can identify, or who could identify at one time...maybe when your melanoma diagnosis was still fairly new.<br />
<br />
That term led someone to this blog and I hope they found what they were looking for. This topic needs to be addressed for those who have received this diagnosis. Yes, the stat for a melanoma diagnosis is on the rise, worldwide. Yes, the stat for dying from melanoma is, likewise, rising. This is one of the few cancers that can say that. This post isn't about the stats as they apply to a possible melanoma diagnosis. This post is for those who have received that diagnosis and a dose of stats to go along with it...or who consult the Internet Statistician (which is a really, really baaaaaad idea!)<br />
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We all get them. Some of us get more than others, depending on the doctor. When we are diagnosed and given our stage, we are told our chances of recurrence. Some people are told their chances of dying. No matter what course of treatment we decide on, we may be given stats for it working or not. Those stats can be thrown out the window if and when our stage changes...which it can only go up from where it began. We can look online and find stats for our ethnicity, gender, age, country, and we can zero in from there and get stats for our state or region. Stats for our hair color and food preferences. Stats for how many sunburns we've had or if we've used a tanning bed. You name it and there are stats for it as it's related to melanoma. We can get overwhelmed and drown in a sea of figures. We can get downright scared to death!<br />
<br />
First: stats change and many of the ones you'll find are outdated. Particularly those surrounding your chance of recurrence and the chances of dying, at your stage, in a given time-frame. Those are going down, somewhat. Many of the available stats came out before the treatments we have now...some FDA approved and others that are in trial but showing tremendous promise for many. That all illusive cure, or cures as it will probably take more than one to "cure" all melahomies since melanoma is such an individualistic cancer, WILL happen and we're getting closer all the time.<br />
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Second: yes, all the stats you will see reflect real people with real stories. BUT, remember, there are two sides to every stat! For some reason, we are usually given the stat that reflects our chances of recurrence or of dying...and not the stat that reflects our chances of NOT having a recurrence at the stage we currently are, or our chances of NOT dying within a particular time-frame.<br />
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For example. When I was diagnosed stage 3b in July 2008, I was given this stat by my melanoma specialist surgical oncologist at Duke: I had a 30-35% chance that melanoma would return in either my brain or lungs within ten years. Note: my melanoma mole was removed from my upper left arm, hence the brain or lungs as the places a recurrence was likely to occur.<br />
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A THIRTY to THIRTY-FIVE percent chance?! Oh my! Did I quake in my shoes? Yes, indeed I did! Did my heart know fear and my ears burn at those words? Yes, indeed that happened! Did I look for melanoma behind every rock and mole? Oh yeah.<br />
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But you know what? I dawned on me that if I had a 30-35 % chance of recurrence within 10 years, then that ALSO meant that I had a 65-70% chance that it would NOT recur within ten years! Why, oh why, had the doctor not told me THAT?! Real people with real stories make up THAT stat, too! MOST people at stage 3b do well with their melanoma and when we really take THAT kind of look at the stats...most people of ANY stage do well with their melanoma. Even people with stage 4 melanoma are doing better and better all the time...<i><b>many</b></i> are. And I am not diminishing the battle of those who are in the fight of their lives for their lives...or of those who are entering into Hospice having exhausted all the options we now have and nothing worked for them. There are people who were diagnosed 3b when I was, who did not do well with their melanoma, and have run their race through Heaven's Gates of Praise. We are still in a place, in melaland, where not everything works for everybody, unfortunately. Remember, real people make up both sides of all stats. We're praying and working to change those numbers so the number of those who do well, at any stage, continues to go up until everyone does well and there are cures.<br />
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Have a healthy regard for the stats. Know your stats. But know both sides of your stat and have HOPE!<br />
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I'm almost six years now into that ten year stat I was given in 2008. I haven't had any recurrence and since I've passed that five year milestone, I don't live in constant fear and dread anymore. Oh, I know the score. I know it <b>CAN</b> happen. But that doesn't mean that it <i><b>WILL</b></i> happen. <br />
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So. What am I doing? I'm living my life the way I want to. Quietly and simply. I enjoy my family and adore the two cutest grandchildren God has put on the planet and He put them in my life! I'm active in my church...better be since I'm the pastor! I live the small town life in a truly small town and wouldn't have it any other way. I'm active in the online melanoma community and do my best to give hope and comfort, both as needed. But I'll also give a swift kick in the cyberpants when it's warranted. I blog. I participate in an Aim at Melanoma walk each year. In the past, I've gone to Charlotte, NC. This year I went to Chesapeake, VA.<br />
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Stats are a part of life. They are out there in abundance whether you have melanoma or not. Be smart when you encounter them. They are numbers. They are not YOU. You reside inside every stat, somewhere, that's true enough. I'm somewhere in stats about cheesecake and coffee. Tofu and cauliflower (neither of which I like or eat, but there are stats about them, so I'm on one side or the other of each stat that exists). You get my point. Stats are part of our culture and coming up with them keeps people employed.<br />
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They represent real people with real stories. They're there. Acknowledge them. Know the ones that you need to know. And lay them aside.<br />
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Here's a stat that holds for everyone: You get ONE life. You get ONE death and you WILL die at some point. All of that is 100% accurate. Don't let outdated stats prevent you from living your God-given life. Be smart, be proactive. Take care of yourself. If a recurrence happens, it happens and NOT because of a statistic! Deal with it when and if it happens. I haven't lived six years waiting for the other shoe to drop. Chances are in my favor that it won't happen.<br />
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Will my stat change if I make another four years without a recurrence? Sure it will. And I'll live being on one side or the other and I'll still know the score. I'm far from ignorant about melanoma.<br />
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But no number is going to rule my life. It's just not. I refuse to give a number that kind of power. I choose to give THAT power to God.<br />
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<i>charis</i>Carol Taylorhttp://www.blogger.com/profile/17930711637707595995noreply@blogger.com2tag:blogger.com,1999:blog-320450055573507207.post-26187990763738149182014-06-21T10:09:00.000-04:002014-06-21T10:48:28.544-04:00A SUN Addict? Who ME?Well. Yes. According to the latest thing being studied, mice and I just may have something in common. More than a love of peanut butter and a like of cheese, we may also have the capacity to be addicted to the sun!<br />
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I'll be 55 years old in September. I haven't sunned in a mighty long time. Hush and don't do the math. But, back when I was younger, starting when I was around 12 and on until I was around 16, I dearly loved, LOVED I tell you, grabbing my towel, the bottle of Johnson's Baby Oil, and going out in the back yard, or to the pool which was conveniently across the street from my house, and laying out. And falling asleep in the nice warm sun. And don't forget when my family went to Myrtle Beach for vacation every August. Laying out was a great way to meet beach bums! That's how I got my sunburns...and when I got my sunburns...that fired up and bit me in the form of melanoma when I was 48. <br />
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I truly did stop laying out before I graduated from high school. My maternal granddaddy had had many melanoma and skin cancers removed. He was a sawmill man and practically lived outdoors all his life. Somewhere around that time I heard family members talking about his melanomas and associating them with him being out in the sun. I really had no clue what "melanoma" really was all about, but I knew it was "cancer" and I knew that if he had it, I could get it and I knew I didn't want anything to do with any kind of cancer. So I stopped laying out. Whew. I sure thought I'd dodged<b><i> that</i></b> bullet!<br />
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I had no idea that I'd already done eternal damage to my skin, that my skin would never forget those burns...isn't it funny what we remember? I remember the good times associated with laying out, my skin, on the other hand, remembered I cooked it...and I certainly had no idea my skin would never forgive me. And I've been mighty good to my skin since those tanning years. Rats. Skin does not forgive. At all. <br />
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I had no idea I may have been addicted to the sun. It felt good to lay out. It felt good to fall asleep in it. It felt good to feel good out there. It felt good to get a nice tan. See, I usually tanned. I didn't get as deeply browned as some people, but I rarely burned and I did get a nice color. I'm brunette and my skin tone has pinkish undertones, so my skin was <i>enhanced,</i> shall we say, by my time in the sun.<br />
<br />
Here's a <a href="http://www.nbcnews.com/health/health-news/soak-sun-you-may-be-tanning-addict-n135651" target="_blank">link to the recent study as it pertains </a>to <i><b>SUN</b>tanning</i>.<br />
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It's hard to believe that it's been so long ago (three years!) but before there was this study on the sun being addictive, there was <a href="http://psychcentral.com/news/2011/08/11/tanning-bed-addiction/28530.html" target="_blank">a study on tanning beds being addictive</a>. I have friends in the melanoma community who were tanners and who readily admit they were addicted.<br />
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For the life of me, I will never understand how those things have risen in popularity as they have. We call them tanning coffins. I don't care if David Cassidy had been in one waiting for me to join him, there's no way on God's green earth that I would ever have gotten in one and pulled the lid down over me. I'm far too claustrophobic for that. Even a bottom layer of cheese cake and the lid drizzling caramel and hot fudge on top of me when the lid was closed would never have gotten me into one. But people, too many...one is too many...get in them everyday. No David Cassidy. No cheesecake. Just those blasted UV lights that can be addicting...<br />
<br />
And I get it. I understand. I didn't until this study about suntanning came out. Tanning, of any kind, can be addicting. It can feel soooooooo good. It can be a mood elevator. And despite what we know about tanned skin being damaged skin and despite the skin cancer warnings from reformed tanners like me, people still engage in those behaviors because they've "got to have it."<br />
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And I understand now why we're having such a difficult time getting through to so many about the need to stop tanning. Many are addicted whether they know it or not. It's easy for them to put their fingers in their ears and tune us out or tell us where to go, because they enjoy what they're doing. It feels good and they really like how they look. They think any consequences either won't happen to them, or they think that if they do get melanoma or skin cancer they'll be able to cut it out and go on...no big deal. They don't get it and they don't want to hear about any future problems. Right now life is good and they love who they are. Just like any addict, they cannot see or perceive the damage they are doing to themselves or grasp the damage that will be done to their families one day.<br />
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Addictions can be broken though. One way or another they can, and must, be broken. Go cold turkey. Wean yourself until you're completely done. Break the cycle. If you haven't started tanning in any form, don't start. Take care of your skin from the beginning.<br />
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Tanning is dangerous. It can, and will, be deadly for many. You won't know if you're in that number until you're bitten and then it will be too late. Smokers can stop smoking and reduce their chances of lung cancer. Tanners, in a way, can do the same thing. Some can stop tanning right now and never get melanoma or skin cancer. Some can stop tanning, but, like me, you will get melanoma or skin cancer at some point. I can't tell who will and who won't get it.<br />
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Don't be like me.<br />
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Listen to me, though. You really don't want to court melanoma.<br />
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No tan, no matter how it is gotten, is worth dying over.<br />
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No addiction is worth dying over. An addiction CAN be broken. It takes guts. It takes willpower. It takes time. Be addicted to LIFE! Be addicted to your SKIN and getting it healthy and keeping it healthy.<br />
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My brother is a recovering crack addict and recovering alcoholic. Though he has been doing great these past several years, he will always have to be mindful of his triggers and avoid them. He will always have to remember where he has been and look to the future and know what he wants, and needs, to do to stay clean. I've blogged about him and you're free to do a site search for those two posts. <br />
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I'm not ignorant about addictions. Is mine the same as his? Mine's not going to land me in prison like his almost did. But, both are life altering, both are very expensive to treat, both are deadly. Dead is dead.<br />
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Melanoma has changed my family just as surely as crack changed his. Different ways, different ramifications and consequences, but <i>changed </i>nonetheless.<br />
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If you tan, be it in the sun or in tanning beds, or in both, think of that as your "crack".<br />
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Say "no". Learn the facts. Make the necessary life changes. Appreciate the skin tone you were given by God. Take care of your skin. Don't bake it or broil it, either naturally or artificially.<br />
<br />
My name is "Carol" and I was a sun addict.<br />
<br />
And now I have melanoma. Stage 3b.<br />
<br />
It wasn't worth it after all.<br />
<br />
<i>charis</i>Carol Taylorhttp://www.blogger.com/profile/17930711637707595995noreply@blogger.com2tag:blogger.com,1999:blog-320450055573507207.post-61419271722978681612014-06-12T15:02:00.001-04:002014-06-12T15:06:48.020-04:00Taking A Moment For Meso<!--[if !mso]>
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</o:shapelayout></xml><![endif]--><b>Mesothelioma </b><b><span style="font-weight: normal; mso-bidi-font-weight: bold;">that is. As you know,
melanoma is my cancer and the one I am most familiar with. However, I was
contacted by Cameron Von St. James, husband of Heather, to join their summer
campaign to raise awareness of meso. Heather is an eight year survivor, and a
walking miracle. How can I pass up on the opportunity to share the story of the
“</span></b><span style="mso-fareast-font-family: "Times New Roman";">Self
proclaimed ‘Poster child for hope after mesothelioma’ for those suffering from
asbestos disease”? </span>
<br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-fareast-font-family: "Times New Roman";">How can I pass up the opportunity
to educate about a rare cancer and save some lives? Three thousand people, in
the USA alone, are diagnosed each year. That means thousands are walking around
with symptoms and have yet to be diagnosed. Thousands have yet to develop
symptoms, but they will.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<a href="http://3.bp.blogspot.com/-e0nEn2hd0SI/U5n4W4od1hI/AAAAAAAAAME/xA6QWC4qghg/s1600/Heather.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://3.bp.blogspot.com/-e0nEn2hd0SI/U5n4W4od1hI/AAAAAAAAAME/xA6QWC4qghg/s1600/Heather.jpg" /></a><span style="mso-fareast-font-family: "Times New Roman";">We’re
all in this together. Cancerworld is a big place and some roads are better
known than others. Mesothelioma Road needs some exposure and those who walk
that road need those of us on other paths to do more than wave at them. So sit
back, keep reading, learn something, take notes in case you ever find yourself
with the symptoms, and say “hi” to Heather, for she will be our face for this
disease. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-fareast-font-family: "Times New Roman";">Here’s
Heather’s blog:<span style="mso-spacerun: yes;"> </span></span><a href="http://www.mesothelioma.com/blog/authors/heather/"><span style="mso-fareast-font-family: "Times New Roman";">http://www.mesothelioma.com/blog/authors/heather/</span></a><span style="mso-fareast-font-family: "Times New Roman";"> This is her story, in<span style="mso-spacerun: yes;"> a </span>nutshell and in the words of her husband, “</span>a
rare mesothelioma cancer survivor who beat the odds 8 years ago when she was
given only 15 months to live. Heather was diagnosed just three months after
giving birth to our daughter Lily. After a life saving surgery that included
the removal of her left lung, Heather is thriving more than ever!”</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
People with ANY kind of cancer, particularly rarer cancers,
need to know <b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;">there is <u>hope</u></i></b>! We all need stories like Heather’s! We
need to know there are not only <i style="mso-bidi-font-style: normal;">survivors</i>,
but there are <b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;">thrivers</i></b>! We need to know there are resources available and
specialists in our cancer. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And we need to know what to look for. I’ve learned, thanks
to Cameron’s invitation, that mesothelioma is difficult to diagnose. It’s often
advanced by the time doctors figure out what their patient has…sounds like
melanoma to me. That’s another reason I said I’d write this post…the more I
learned, the more I saw my disease mirrored in theirs. People need to know
that…</div>
<div class="MsoNormal">
<br /></div>
<b>“<span style="mso-fareast-font-family: "Times New Roman";">Mesothelioma is
difficult to </span><a href="http://www.mesothelioma.com/mesothelioma/diagnosis/"><span style="color: blue; mso-fareast-font-family: "Times New Roman";">diagnose</span></a><span style="mso-fareast-font-family: "Times New Roman";"> because the early signs and
symptoms of the </span><a href="http://www.mesothelioma.com/mesothelioma/information/disease.htm"><span style="color: blue; mso-fareast-font-family: "Times New Roman";">disease</span></a><span style="mso-fareast-font-family: "Times New Roman";"> can be subtle or mistaken.
Symptoms are all too frequently ignored or dismissed by people who are inclined
to attribute them to common every day ailments. Sometimes patients live with
symptoms for up to 6 months before being diagnosed but usually the symptoms are
present for two to three months prior to a </span><a href="http://www.mesothelioma.com/mesothelioma/"><span style="color: blue; mso-fareast-font-family: "Times New Roman";">mesothelioma</span></a><span style="mso-fareast-font-family: "Times New Roman";"> diagnosis.</span></b><br />
<br />
<b>
</b><br />
<div class="MsoNormal" style="mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<b><span style="mso-fareast-font-family: "Times New Roman";">About 60% of patients
diagnosed with pleural mesothelioma experience lower back pain or side chest
pain, and there are frequent reports of shortness of breath. Lower numbers of
people may experience difficulty swallowing, or have a persistent cough, fever,
weight loss or fatigue. Additional symptoms that some patients experience are
muscle weakness, loss of sensory capability, coughing up blood, facial and arm
swelling, and hoarseness.</span></b></div>
<div class="MsoNormal" style="mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<br /></div>
<b>
</b><br />
<div class="MsoNormal" style="mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<b><span style="mso-fareast-font-family: "Times New Roman";">Peritoneal mesothelioma
originates in the abdomen and as a result, symptoms often include abdominal
pain, weight loss, nausea, and vomiting. Fluid buildup may occur in the abdomen
as well as a result of the cancer.” </span><a href="http://www.mesothelioma.com/mesothelioma/symptoms/"><span style="mso-fareast-font-family: "Times New Roman";">http://www.mesothelioma.com/mesothelioma/symptoms/</span></a></b></div>
<div class="MsoNormal" style="mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<b><span style="mso-fareast-font-family: "Times New Roman";"> </span><span style="mso-fareast-font-family: "Times New Roman";"> </span></b></div>
<b>
</b><br />
<div class="MsoNormal">
<b><span style="mso-fareast-font-family: "Times New Roman";">People
need to know that while exposure to asbestos is considered the primary risk
factor, “One of the most unique facts about mesothelioma is that the disease is
characterized by a long latency period that is very often associated with the
disease. The latency period is the amount of time that elapses from the first
point of asbestos exposure to the point where symptoms begin to appear so that
a diagnosis can be made. In some mesothelioma cases the </span><a href="http://www.mesothelioma.com/mesothelioma/information/latency-period.htm"><span style="color: blue; mso-fareast-font-family: "Times New Roman";">latency period</span></a><span style="mso-fareast-font-family: "Times New Roman";"> is reported to be 10 years
but the average latency for the majority of cases is between 35 and 40 years.
As a result, the cancer often progresses to later </span><a href="http://www.mesothelioma.com/mesothelioma/stages/"><span style="color: blue; mso-fareast-font-family: "Times New Roman";">stages</span></a><span style="mso-fareast-font-family: "Times New Roman";"> before a diagnosis is made. When diagnosed in the later
stages, mesothelioma treatment options become more limited and are less
effective.”</span></b></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-fareast-font-family: "Times New Roman";">As a
melanoma survivor whose sunburns caught up with me decades later, this too,
resonates with me. And just like melanoma has several risk factors people don’t
know about, well, so does mesothelioma... </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b><span style="mso-fareast-font-family: "Times New Roman";">“There
are several risk factors that increase the likelihood that a person will
develop </span><a href="http://www.mesothelioma.com/mesothelioma/"><span style="color: blue; mso-fareast-font-family: "Times New Roman";">mesothelioma</span></a><span style="mso-fareast-font-family: "Times New Roman";">. The primary risk factor is </span><a href="http://www.mesothelioma.com/asbestos-exposure/"><span style="color: blue; mso-fareast-font-family: "Times New Roman";">asbestos exposure</span></a><span style="mso-fareast-font-family: "Times New Roman";">. Exposure to this very
harmful substance can significantly enhance the chances of contracting the
disease. While smoking does not have a direct causal relationship with
mesothelioma, it is a significant compounding factor that increases the
likelihood of developing the disease. Other less common secondary factors
include exposure to radiation, zeolite, simian virus 40 (SV40), and erionite.” </span></b></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-fareast-font-family: "Times New Roman";">For
more info about those risk factors please read </span><a href="http://www.mesothelioma.com/mesothelioma/risk-factors/"><span style="mso-fareast-font-family: "Times New Roman";">http://www.mesothelioma.com/mesothelioma/risk-factors/</span></a><span style="mso-fareast-font-family: "Times New Roman";"></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-fareast-font-family: "Times New Roman";">And
if you have this disease, you’ll need a specialist. There are clinical trials. There’s
info on where to find all of that, and more, at </span><a href="http://www.mesothelioma.com/"><span style="mso-fareast-font-family: "Times New Roman";">http://www.mesothelioma.com/</span></a><span style="mso-fareast-font-family: "Times New Roman";">. There are other blogs and
you can connect with the mesothelioma community. I cannot begin to stress the
importance of connecting with a community of fellow fighters.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-fareast-font-family: "Times New Roman";">Who
knew that a young woman of child-bearing age, whose Dad had worked with
asbestos…and that’s how she was exposed, could get mesothelioma and the
pronouncement she’d live 15 months? Heather didn’t know. So many don’t know. We
all need to know.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-fareast-font-family: "Times New Roman";">Thankfully,
eight years later, she’s here to tell us.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-fareast-font-family: "Times New Roman";">Let
those with ears, listen.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i style="mso-bidi-font-style: normal;"><span style="mso-fareast-font-family: "Times New Roman";">charis!</span></i></div>
<div class="MsoNormal">
<span style="mso-fareast-font-family: "Times New Roman";"> </span><span style="mso-fareast-font-family: "Times New Roman";"></span>
</div>
Carol Taylorhttp://www.blogger.com/profile/17930711637707595995noreply@blogger.com0tag:blogger.com,1999:blog-320450055573507207.post-13548850112803606902014-06-07T12:48:00.000-04:002014-06-07T12:58:01.489-04:00There's a REASON I'm Called "Bossy" in MelalandAnd it's because I am. Sigh. I'm kinda "bossy" everywhere I go. It must be in the air I breathe. (Insert annoying smiley face here). But I'm bossy because, as my dear deceased mother-in-law used to say, "I know better." And, often, she did.<br />
<br />
I'm also referred to, sometimes, as Hotel Melanoma Chaplain Boss Queen (HM CBQ). Again, there are reasons. I've been around melaland a while now. I've seen a lot. I've heard a lot. Some people are new and I have to repeat, for their sakes, what many "old-timers" on melanoma road have heard from me before. Other people just plain are not listening. So...here we go...<br />
<br />
IF you have any place of any concern on or in your body that is changing or problematic in any way...get it checked out. You don't need somebody telling you to go to the doctor. GO! Get it checked. If you suspect you have ANY kind of cancer, not just melanoma (which is my specialty), see a specialist of THAT organ, get the proper testing done, get something biopsied if necessary...usually, especially if melanoma is suspected, a biopsy is the ONLY way to tell what you're dealing with. Find out what you're dealing with. IF you have cancer, it is growing, and maybe spreading, while you're watching it, debating whether or not to see a doctor, and praying that it goes away.<br />
<br />
Often, to be fair, we really don't suspect "cancer" of any kind and are completely blindsided with that diagnosis...so, the initial action may not be to see an internist of any kind. But DO see your general practitioner! Do have someone monitoring you and who will refer you to where you need to go if you do not respond to their initial treatment. Certainly not every ache is cancer of some kind. But you know if your aches and pains aren't responding to what you're doing. And you should know the general signs of cancer such as sudden, unexplained weight loss. Simply put, be proactive now so you won't have to, possibly, be reactive later. It's your health and your life we're talking about. Keep that in mind. YOUR health and life...not your doctor's! And, a huge BTW here...being "proactive" also includes making any lifestyle changes you may need to make such as having a healthier diet, exercising, stopping smoking, no tanning beds, safe sun practices, drinking in moderation (if you drink at all), etc. Many things are linked to cancer diagnoses and many have to do with unhealthy habits...genetics and the great unknowns of cancer are another matter and ones we can't help, so, help and change what you can.<br />
<br />
Skin is our largest organ, so in melaland, you need a dermatologist who makes melanoma and skin cancer the focus of their practice. Not all dermatologists do. Dermatology, like all areas of medicine, are specialized now. That's their prerogative. If you live anywhere within a couple hours or so of a hospital that's large enough to have a dermatology department, you can begin there. If you prefer a dermatologist in private practice, they can also help you find one. You're online, you can find one. Call their office and ask if they do full-body skin checks. If they do not, call someone else. (NOTE: in the USA, now that insurance is mandatory, you may have to go to a dermatologist that is ok-ed by your insurer and you may need a referral...check). You'll also want your dermatologist to remove your place of concern.<br />
<br />
Even if you find a dermatologist who focuses on melanoma, that doctor is still fallible. Not all melanoma presents as the changing mole that obeys the ABCDE's of melanoma. So....trust your gut and insist that your dr trust your gut as well. Be prepared to be your own best advocate! Be prepared to find another doctor. Seriously. Do what YOU HAVE TO DO!<br />
<br />
And, remember...not all melanoma will present itself where it can be seen! Many people don't have a known primary and many are diagnosed at stage 4 (it is internal). If you're having headaches that won't go away, or internal issues...see the proper doctor...you may not have melanoma...but you need the right doctor to find what you DO have.<br />
<br />
Be prepared to be your child's best advocate! Pediatric melanoma (and other cancers) are on the rise. Know your child's body. Scalp to toes and soles of feet and palms of hands and all their finger and toenails. Trust your parental gut and, again, if you have to change doctors CHANGE DOCTORS.<br />
<br />
Don't play the watch and wait game. Yes, you may win. But you may also lose and lose big time. If you are concerned and want something removed and pathed...get it removed and pathed.<br />
<br />
Be prepared to fight for what you need. Be prepared to change doctors. Be prepared to go places you never thought you'd ever go. Be prepared to do what YOU HAVE TO DO. I cannot say that often enough.<br />
<br />
Some cancers are on the decline...but people will still get them. Some are on the increase, like melanoma, across ALL demographics, worldwide....people WILL get melanoma.<br />
<br />
Oh. And when it comes to melanoma, "When in doubt, cut it out." That's a mantra in melaland. Don't shave, freeze, or burn off a suspected melanoma...CUT IT OUT. For the record, a dermatologist does not have to be the one to do it. A PA at an Urgent Care facility cut out my melanoma mole and because that facility was in the Duke system, I was in the Duke system immediately upon my diagnosis. The doctor there KNEW to get me in the hands of a Duke melanoma specialist...I would never have known to do that.<br />
<br />
SO...if you get a melanoma diagnosis...YOU need a melanoma specialist! THAT is CRUCIAL! IMPERATIVE! Your LIFE may well depend on it! A general oncologist is NOT who you need! An oncologist who specializes in another cancer is NOT who YOU need!<br />
<br />
Aim at Melanoma has a list of melanoma specialist oncologists in the USA and Canada. Where you find them you'll also find surgical oncologists who are mel specs as well as dermatologists who focus on melanoma and skin cancer. <a href="http://www.aimatmelanoma.org/en/aim-for-answers/path-to-getting-a-diagnosis/finding-the-right-doctor.html" target="_blank">Here's that link</a>.<br />
<br />
If you are outside the USA or Canada, you are online. Find the melanoma organization in your country and contact them. They will help you find one as well as navigate your system.<br />
<br />
Blessings! Now listen to me.<br />
<br />
<i>charis!</i>Carol Taylorhttp://www.blogger.com/profile/17930711637707595995noreply@blogger.com0tag:blogger.com,1999:blog-320450055573507207.post-44612371230988954082014-05-28T17:44:00.004-04:002014-05-28T17:54:52.082-04:00connection between paycheck and cancerA real search term that recently led Yahoo to send someone to my blog. Really. I don't believe I have ever blogged about any such connection. I've seen allusions, in a few articles, to income and a cancer diagnosis. Since I am hardly well-versed on this topic, I looked it up.<br />
<br />
PLEASE read the following links and share them. They are easily shared in social media.<br />
<br />
First. As I write, this article just came out YESTERDAY! <a href="http://www.philly.com/philly/health/cancer/HealthDay688173_20140527_Your_Income_Might_Influence_Your_Risk_for_Certain_Cancers.html" target="_blank">"Your Income Might Influence Your Risk For Certain Cancers."</a> Melanoma, my particular cancer is mentioned. Lovely. Here's the paragraph: "In the wealthiest areas, thyroid and testicular cancer, melanoma and other skin cancers were more common according to the report, published online May 27 in <i>Cancer</i>."<br />
<br />
Please read that article. It ends with "For more information about cancer and poverty, visit the <a href="http://www.cancer.org/myacs/eastern/areahighlights/cancernynj-news-five-facts-poverty" target="_blank">American Cancer Society</a>." Read that link as well because it's THIS article that brings education into the picture. Be sure and click on the 5 graphics! Now, this article is from 2011, so I searched the American Cancer Society's website and found<br />
<br />
<a href="http://www.cancer.org/acs/groups/content/@research/documents/webcontent/acspc-042151.pdf" target="_blank">Cancer Facts & Figures 2014</a><br />
<br />
Scroll to page 48 for "Cancer Disparities" and you'll see the subtitle "Socioeconomic Status" and you'll read, <b><i>"People with lower socioeconomic status (SES) have disproportionately higher cancer death rates than those with higher SES, regardless of demographic factors such as race/ethnicity. For</i></b><b><i> example, cancer mortality rates among both African American and non-Hispanic white men with 12 or fewer years of education are almost 3 times higher than those of college graduates for all cancers combined, and are 4-5 times higher for lung cancer. Furthermore, progress in reducing cancer death rates has been slower in people with lower SES. These disparities occur largely because people with lower SES are at higher risk for cancer and have less favorable outcomes after diagnosis. People with lower SES are more likely to engage in behaviors that increase cancer risk, such as tobacco use, physical inactivity, and poor diet. This is in part because of marketing strategies that target these populations, but also because of environmental or community factors that provide fewer opportunities for physical activity and less access to fresh fruits and vegetables. Lower SES is also associated with financial, structural, and personal barriers to health care, including inadequate health insurance, reduced access to recommended preventive care and treatment services, and lower literacy rates. Individuals with no health </i><i>insurance are more likely to be diagnosed with advanced cancer and less likely to receive standard treatment and survive their disease. For example, stage II colorectal cancer patients with private insurance have better survival than stage I patients who are uninsured. For more information about the relationship between SES and cancer, see Cancer Facts & Figures 2011, Special Section, and Cancer Facts & Figures 2008, Special Section, available online at cancer.org."</i></b><br />
<b><i> </i></b><br />
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Keep reading the online document for there is a great deal more information. A wide variety of topics are tackled.</div>
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<br /></div>
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My thanks to Yahoo for sending some unsuspecting person to my blog. I'm pretty sure they did not find, at the time, what they were looking for, but their search led me on my own. While I am disturbed by much I read and learned, I am grateful to have learned it.</div>
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<br />
There is much to be done on many levels to level the playing field. If we're in this together, like I preach and truly believe we are, then we need to get busy. God bless us, everyone. </div>
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<br /></div>
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<i>charis</i></div>
<div id="r1PostCPBlock" style="background-color: white; border: medium none; color: black; left: -99999px; overflow: hidden; position: absolute; text-align: left; text-decoration: none;">
For more about cancer and poverty, visit the <a data-ls-seen="1" href="http://www.cancer.org/myacs/eastern/areahighlights/cancernynj-news-five-facts-poverty" target="_new"> American Cancer Society</a>.<br />
Read more at <a href="http://www.philly.com/philly/health/cancer/HealthDay688173_20140527_Your_Income_Might_Influence_Your_Risk_for_Certain_Cancers.html#shm8lUFpoOVlpZpe.99" style="color: #003399;">http://www.philly.com/philly/health/cancer/HealthDay688173_20140527_Your_Income_Might_Influence_Your_Risk_for_Certain_Cancers.html#shm8lUFpoOVlpZpe.99</a>F</div>
<div id="r1PostCPBlock" style="background-color: white; border: medium none; color: black; left: -99999px; overflow: hidden; position: absolute; text-align: left; text-decoration: none;">
In
the wealthiest areas, thyroid and testicular cancer, melanoma and other
skin cancers were more common, according to the report, published
online May 27 in <i>Cancer</i>.<br />
Read more at <a href="http://www.philly.com/philly/health/cancer/HealthDay688173_20140527_Your_Income_Might_Influence_Your_Risk_for_Certain_Cancers.html#shm8lUFpoOVlpZpe.99" style="color: #003399;">http://www.philly.com/philly/health/cancer/HealthDay688173_20140527_Your_Income_Might_Influence_Your_Risk_for_Certain_Cancers.html#shm8lUFpoOVlpZpe.99</a></div>
<div id="r1PostCPBlock" style="background-color: white; border: medium none; color: black; left: -99999px; overflow: hidden; position: absolute; text-align: left; text-decoration: none;">
In
the wealthiest areas, thyroid and testicular cancer, melanoma and other
skin cancers were more common, according to the report, published
online May 27 in <i>Cancer</i>.<br />
Read more at <a href="http://www.philly.com/philly/health/cancer/HealthDay688173_20140527_Your_Income_Might_Influence_Your_Risk_for_Certain_Cancers.html#shm8lUFpoOVlpZpe.99" style="color: #003399;">http://www.philly.com/philly/health/cancer/HealthDay688173_20140527_Your_Income_Might_Influence_Your_Risk_for_Certain_Cancers.html#shm8lUFpoOVlpZpe.99</a></div>
<div id="r1PostCPBlock" style="background-color: white; border: medium none; color: black; left: -99999px; overflow: hidden; position: absolute; text-align: left; text-decoration: none;">
In
the wealthiest areas, thyroid and testicular cancer, melanoma and other
skin cancers were more common, according to the report, published
online May 27 in <i>Cancer</i>.<br />
Read more at <a href="http://www.philly.com/philly/health/cancer/HealthDay688173_20140527_Your_Income_Might_Influence_Your_Risk_for_Certain_Cancers.html#shm8lUFpoOVlpZpe.99" style="color: #003399;">http://www.philly.com/philly/health/cancer/HealthDay688173_20140527_Your_Income_Might_Influence_Your_Risk_for_Certain_Cancers.html#shm8lUFpoOVlpZpe.99</a></div>
<div id="r1PostCPBlock" style="background-color: white; border: medium none; color: black; left: -99999px; overflow: hidden; position: absolute; text-align: left; text-decoration: none;">
In
the wealthiest areas, thyroid and testicular cancer, melanoma and other
skin cancers were more common, according to the report, published
online May 27 in <i>Cancer</i>.<br />
Read more at <a href="http://www.philly.com/philly/health/cancer/HealthDay688173_20140527_Your_Income_Might_Influence_Your_Risk_for_Certain_Cancers.html#shm8lUFpoOVlpZpe.99" style="color: #003399;">http://www.philly.com/philly/health/cancer/HealthDay688173_20140527_Your_Income_Might_Influence_Your_Risk_for_Certain_Cancers.html#shm8lUFpoOVlpZpe.99</a></div>
<div id="r1PostCPBlock" style="background-color: white; border: medium none; color: black; left: -99999px; overflow: hidden; position: absolute; text-align: left; text-decoration: none;">
In
the wealthiest areas, thyroid and testicular cancer, melanoma and other
skin cancers were more common, according to the report, published
online May 27 in <i>Cancer</i>.<br />
Read more at <a href="http://www.philly.com/philly/health/cancer/HealthDay688173_20140527_Your_Income_Might_Influence_Your_Risk_for_Certain_Cancers.html#shm8lUFpoOVlpZpe.99" style="color: #003399;">http://www.philly.com/philly/health/cancer/HealthDay688173_20140527_Your_Income_Might_Influence_Your_Risk_for_Certain_Cancers.html#shm8lUFpoOVlpZpe.99</a></div>
Carol Taylorhttp://www.blogger.com/profile/17930711637707595995noreply@blogger.com0tag:blogger.com,1999:blog-320450055573507207.post-17482590973324119842014-05-15T12:18:00.000-04:002014-05-15T12:18:18.270-04:00Leave me ALONE, for crying out loud! It's JUST a mole!<span style="font-size: small;">I said that many times when I was a teenager. When I was in my twenties. In my thirties. Even on into my forties. I said it to my Mama the most. I said it to my Daddy. I said it to my husband. I said it, a bit nicer than that, to complete strangers. But that not all I said.</span><br />
<span style="font-size: small;"><br /></span>
<span style="font-size: small;">"It's not going to <i><b>kill me</b></i> or anything!"</span><br />
<span style="font-size: small;"><br /></span>
<span style="font-size: small;">That completes my dramatic response to anyone who did not like the looks of the mole on my upper left arm and dared to say anything about it. To tell you the truth, I got sick and tired of hearing how I "was going to have trouble with it one day," or "do you know you have a tick on your arm?"</span><br />
<span style="font-size: small;"><br /></span>
<span style="font-size: small;"><i>Seriously?</i> Anyone who knows me, at all, would know that if there was a tick anywhere on my person, I would find it, remove it, flush it, and certainly not tote it around with me for the fun of it! And anyone who knows me knows that I do not <i>voluntarily</i> show up at a doctor's office and ask to have something <i>removed</i>. Especially something as innocuous as that mole. It didn't bother me. Why couldn't other people just shut up about it?</span><br />
<span style="font-size: small;"><br /></span>
<span style="font-size: small;">I did show it to my OB-GYN one time, to get her learned opinion. And she agreed with me: it was two moles that overlapped and that's all it was. Nothing to write home about.</span><br />
<span style="font-size: small;"><br /></span>
<span style="font-size: small;">But. Dang it. When I was 48 that mole reared up and bit me. Mama was proven right after all those years. Double dang it. I found out the hard way that a mole really can bring me down. Can we say "RATS!" OK, this calls for strong language. Garden peas! (Don't blame me. My Mama's a baaad example!)</span><br />
<span style="font-size: small;"><br /></span>
<span style="font-size: small;">My story is scattered throughout this blogsite so I won't be redundant. But I won't be remiss either.</span><br />
<span style="font-size: small;"><br /></span>
<span style="font-size: small;">We're in Melanoma Awareness/Education Month all May long. And we, in the melanoma community, step up our efforts to open the eyes of people who are enjoying dangerous habits so that they stop their fool-hardy ways and take their own steps to avoid joining our exclusive community.</span><br />
<span style="font-size: small;"><br /></span>
<span style="font-size: small;">We tell our stories, we share pictures, we get facts and information out there. And what happens? Well, I'll tell you. The vast majority of people get sick and tired of it. Many can get downright rude. People who tan in tanning beds or bake out in the sun (especially without proper broadspectrum sunscreen of at least 30, 45-50 is even better) ignore us or call melanoma "just skin cancer" and display a high level of ignorance and arrogance. And we, in the melanoma community, get hurt and we get angry. We say, "THEY know my story and what is happening to me!"</span><br />
<br />
<span style="font-size: small;">And we wring our collective hands because we know that many won't get it until they get it.</span><br />
<br />
<span style="font-size: small;">Just like we did.</span><br />
<br />
<span style="font-size: small;">See, I'm not the only one who<span style="font-weight: normal;"> blasély ignored pleas and went ahead doing like I wanted to do. And besides that mole...well, I have a family history of melanoma. And you know what? I still didn't know what melanoma is and what it means to have it. I failed to take it seriously.</span></span><br />
<span style="font-size: small;"><span style="font-weight: normal;"><br /></span></span>
<span style="font-size: small;"><span style="font-weight: normal;">I've never seen a tanning bed up close and personal. But I know way too many who have. The warnings are everywhere! And, yet, today, right now, around the world, countless people are killing themselves over a tan. They know about the dangers. But they just do not think it can happen to them.</span></span><br />
<span style="font-size: small;"><span style="font-weight: normal;"><br /></span></span>
<span style="font-size: small;"><span style="font-weight: normal;">I got mine from sunburns as a teen. I didn't dare use sunscreen. Nah. That stuff in the 70s smelled like coconut. I used Johnson's Baby Oil! I had no clue I was lighting a lingering flame under that mole that would erupt decades later. No clue. Mama didn't either...not the laying out part...she just never liked how my mole <i>looked</i>. Countless people, all races and who are now middle-aged, were out in the sun for a variety of reasons, unprotected, and melanoma is biting my age demographic hard. We really do pay for the transgressions of our youth, even those transgressions that we don't realize are transgressions. Tanned skin is damaged skin and skin does not forget and it does not forgive. That's a law of nature. Break it and nature can frown really hard.</span></span><br />
<span style="font-size: small;"><span style="font-weight: normal;"><br /></span></span>
<span style="font-size: small;"><span style="font-weight: normal;">We people, as a rule, just do not think melanoma or skin cancer can happen to us. To ME. We think we can do as we wish and nature will turn her head and bat her eyes and pretend we really aren't doing what we're doing to harm our skin. People with a lot of skin pigment will think they're immune. People who have never been in a tanning bed or laid out or who don't fit the "profile" will think it WILL NOT happen to them.</span></span><br />
<span style="font-size: small;"><span style="font-weight: normal;"><br /></span></span>
<span style="font-size: small;"><span style="font-weight: normal;">You know what? If you have skin..or if you have a body...and from what I've seen, that's 100% of the human population...YOU CAN GET MELANOMA! YOU! At any age, anywhere IN or ON your body...anywhere...even those places where the sun don't shine. OK, your teeth cannot get it...but anywhere else in your mouth can. And, strands of hair cannot get it, BUT hair follicles can. Anywhere else, in or on, your body that you can think of...CAN GET MELANOMA. And it can present at any age. Children. Teens. On up into your 90s. And every demographic imaginable is seeing a dramatic rise in the rates of diagnosis.</span></span><br />
<span style="font-size: small;"><span style="font-weight: normal;"><br /></span></span>
<span style="font-size: small;"><span style="font-weight: normal;">And you know what else? I'm just crazy enough to bet that 100% of those people are just like I was and don't think it can happen to them. But it will for one out of every 50 people. And some will be diagnosed at stage 0, in situ. And some will be in the stage 1 range, or the stage 2 range, or the stage 3 range, or stage 4. And NONE will be cured. But all, right now, are thinking, "Well, if it happens to me, I'll just cut it out and be fine. It's no big deal." </span></span><br />
<span style="font-size: small;"><span style="font-weight: normal;"><br /></span></span>
<span style="font-size: small;"><span style="font-weight: normal;">Don't think it can happen to you?</span></span><br />
<br />
<span style="font-size: small;"><span style="font-weight: normal;">I didn't either. Hello. I'm stage 3b.</span></span><br />
<span style="font-size: small;"><span style="font-weight: normal;"><br /></span></span>
<span style="font-size: small;"><span style="font-weight: normal;"><i>charis</i></span></span>Carol Taylorhttp://www.blogger.com/profile/17930711637707595995noreply@blogger.com4tag:blogger.com,1999:blog-320450055573507207.post-90576402367784897862014-04-15T10:14:00.000-04:002014-04-15T20:47:00.018-04:00Experiencing A Bump In The Road On The Way To May: Melanoma Awareness MonthIt's a slow day. What can I say? It's raining, my sinuses are backed up and giving me a horrocious headache, my thinking is fuzzy and foggy...but, I can recognize a bump in the road when I see it. And one can either be stopped by the bump or work around the bump.<br />
<br />
I choose the latter. I may be technologically challenged, but I'm still clever enough to work around a bump as best as I can.<br />
<br />
The bump? FACEBOOK! Oh, I love Facebook. It's a great tool. And it's just that...a tool. It is what we each choose to make of it. Some leave the tool in the shed and never go near it. Me, I embrace Facebook on behalf of my church and on behalf of the melanoma community. Sometimes, however, Facebook fails to embrace me back. It makes changes without my prior approval. And it has made some serious, and in my humble opinion, awful changes to the way an "event" page is administrated since last year about this time. Last year my month-long "May: Melanoma Awareness" event ran without a hitch. Without a hitch, I tell you!<br />
<br />
This year, already, as of today...it has me stymied and irritated. Last year's event had over 7200 attendees by the end of May. Placards had been designed and a wonderful volunteer whose husband had died from melanoma stepped up and offered to put people's pictures in the placard of their choice, and she was swamped. This year she knew she needed more time, so I set the event up earlier this month (April 2014). I should have realized I would have problems when there was no way to add an "end date" and set it to automatically run through the end of May. But, it let me change the event date on a daily basis...I could do that with no problem.<br />
<br />
Houston started having problems last night as I write. I tried to change the event date to today, April 15th, and it wouldn't let me. So, OK, I logged off and rested my computer for the night thinking, naively, that when I logged on today, kink would be gone and I could change the date.<br />
<br />
Well. No. The kink was still there. I couldn't change the date, and because, in Facebook's mind the event was over, it was gone from calendars. That meant people would have to go back into their "past events" and resurrect it. The only saving grace in this is that FB doesn't completely delete old events. It's still "there" technically, but now, even I the event admin, have to hunt for it. Not good.<br />
<br />
It did give me the option of "repeating" the event. And when I tried that, it was a blank event. Back to zero participants and all the posts from the previous event were gone. Scrap THAT idea.<br />
<br />
I chose not to create a <i>new </i>event because I'd run into the same "date" issues...and all previous posts would be gone. <br />
<br />
The event page was giving a few other problems as well. It got to where it would not let me...ME, the event admin, leave photos in comments under posts. Not good. A few people complained to me that pictures that had been posted were somehow "gone." And they would be gone, And sometimes they would show back up again. We already had over 700 people attending this event and already issues were piling up and there wasn't a thing I could do about ANY of it!!!! Not good.<br />
<br />
So, I created a new Facebook page (NOT another "event" but an open community page) for May: Melanoma Awareness Month. Yes, it will mean starting all over. But we still have the placards and wonderful volunteers working on them. And, prayerfully and hopefully, we'll get over this bump in the road and keep driving on with no more challenges to surmount. I hope so because I'm sure not in the mood for surmounting more challenges from Facebook!<br />
<br />
For the record, the event page can still be found here: <a href="https://www.facebook.com/events/523246704452369/">https://www.facebook.com/events/523246704452369/</a><br />
<br />
The new page is here: <a href="https://www.facebook.com/MelanomaAwarenessMonth">https://www.facebook.com/MelanomaAwarenessMonth</a><br />
<br />
I am truly sorry for all inconvenience, redundancy, and any headaches this may cause.<br />
<br />
But, I'll tell ya, if you live with melanoma or any other cancer or health issue or life-issue...this is peanuts. Small potatoes.<br />
<br />
A bump in the road.<br />
<br />
May is coming and we're ready.<br />
<br />
We're going to educate, honor, and remember.<br />
<br />
Join us if you haven't already.<br />
<br />
<b><i>charis</i></b>Carol Taylorhttp://www.blogger.com/profile/17930711637707595995noreply@blogger.com0tag:blogger.com,1999:blog-320450055573507207.post-29269343920117185112014-04-05T10:52:00.000-04:002014-04-05T10:52:49.676-04:00Melalessons From MelahomiesApril 4, 2014, I posted this on Melanoma Prayer Center on Facebook:<br />
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“<span class="usercontent">What have YOU learned on your
melanoma journey that you want to share? Bless others, and yourself, by sharing
please. Thanks!”</span></div>
<br />
As of right this moment, these are the responses I've gotten and they are worth sharing with the greater Internet world. I have not used their names but you are free to go to MPC and scroll until you find the post. There may even be more comments to read by then! Here ya go:<br />
<br />
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<span style="mso-fareast-font-family: "Times New Roman";">“It
wasn't my journey, it my mother's; but what I learned is that although our prayers
aren't always answered in the way we want them to be, they are answered. He
hears us when we are at our lowest and gives us comfort, strength, and many
graces.”</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-fareast-font-family: "Times New Roman";">“My
faith in God has become stronger than it has ever been he is my Rock and my
salvation he has never ending Love for us I praise him several times a day! He
is a healer, I am Blessed, I enjoy every breath I take, I Do not take things
for granted, I <span style="mso-spacerun: yes;"> </span></span><span class="uficommentbody">love to spend time with my family I cherish them every
single second. Life is to short to be unhappy or mad be quick to forgive. I am
still fighting this Disease, I am warrior! All my Love.”</span><span style="mso-fareast-font-family: "Times New Roman";"></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-fareast-font-family: "Times New Roman";">“My
daughter is stage IV, and I have learned that sometimes your children are much
stronger, and braver than we ever imagined.”</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-fareast-font-family: "Times New Roman";">“I've
learned that the material treasures you have on this earth mean nothing. Loving
one another means everything and losing my daughter to this horrible disease is
devastating.”</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-fareast-font-family: "Times New Roman";">“I
have learned that I am stronger than I ever imagined and that life will never
be the same again. I am grateful for the knowledge I now have and can hopefully
through sharing can help raise awareness in hopes that someone else may learn,
and not have to go through what we all do with the beast. I have learned that
there are some wonderful people in the melanoma community and have made some
great friends. I found out the hard way that not everyone understands what your
going through but someone that has went through it themselves, and am so
grateful for all the people that have helped me along my journey!”</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-fareast-font-family: "Times New Roman";">“Life
is amazing. Feel blessed to be here Everyday.”</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-fareast-font-family: "Times New Roman";">“have
learned you find out how strong and resilient you are. I went through my first
diagnosis alone, 4 months later the Lord blessed me with my soon to be husband.
It has been a journey of rediscovery, pain, laughter, tears, and hope. I have
finally been able to loosen the death grip this disease has on me. I won't be
afraid to live my life, be active, and play outside with my children! It really
opened my eyes as to how selfish I was with my body, thinking I was
indestructible, and that cancer could never happen to me. God Bless!! Keep on
fighting you bad ass warriors!!”</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-fareast-font-family: "Times New Roman";">“I
have learned to enjoy and appreciate the small things and never ever take any
day for granted!!”</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-fareast-font-family: "Times New Roman";">“Watching
my husband fight his battle with the "Black Beast", we should
appreciate every minute of everyday for we are not promised tomorrow. My
husband and I were drawn closer to God and Faith has what gets me through each
day without him. God bless.”</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-fareast-font-family: "Times New Roman";">“Amen
to all these comments!!!”</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-fareast-font-family: "Times New Roman";">“every
breath is a gift . . .”</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-fareast-font-family: "Times New Roman";">“KNOW
that surviving stage IV melanoma is never a ONE drug quick solution, everyone
who survives long term has major setbacks, they use plan a, b, c, d and often e
and F! For now, its a combined effort of drugs, and cherry picking. And you
need to know that it takes a long time to get it to go away......so don't
approach your new diagnosis expecting that you will do one miracle drug and it
will solve your problem. Get educated, talk to as many LIVING survivors as you
can, and know what your fall back plan is in advance and don't be crushed when
you have to use it. And pray, not just for the prize at the end of the journey
but pray for the million little things that have to fall into place to become
NED..(stage IV 1996)”</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-fareast-font-family: "Times New Roman";">“I
have learned to appreciate every day. And I've met the most amazing people. So
brave and giving. I wouldn't wish this upon anyone, but it has opened my eyes
to see life in a way I never could have before.”</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-fareast-font-family: "Times New Roman";">“I
learned that eternity in heaven is the ultimate goal. Everlasting life is found
with Jesus and by his side no one will ever hurt again”</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-fareast-font-family: "Times New Roman";">“I've
learned to trust in God & His provision, to prioritise - putting my wife
first in everything, also learned not to postpone things I really want to do.
Also to value the people in my life, and to hopefully make a difference in
their lives”</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-fareast-font-family: "Times New Roman";">“I
still cannot breathe from the loss of my beautiful 20 year old son. I'm still
numb. But from Connor, I learned that every day is a gift and human
connectedness is precious. Even though I can't feel joy yet, I learned that
being joyful has a greater impact on lives that anything else. I learned that
it's important to live every day out loud.”</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-fareast-font-family: "Times New Roman";">“Glad
to have shared a trip,of a lifetime with my beautiful girls and my wonderful husband
who always looks at the glass half full not empty <br />
6 years ago was my first warning shot stage 4 aggressive and one another one
this year nearly to the day I feel like I am dogging bullets and fortunately
for my beautiful girls I am still going ok”</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-fareast-font-family: "Times New Roman";">“Watching
my Dad fight his battle with melanoma has changed me forever. I don't take
anything for granted and live each moment. It has made me realize that u never
know tomorrow so enjoy today!”</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-fareast-font-family: "Times New Roman";">“That
it's not the end of the world, but a beginning of a new journey that can be
filled with joy, blessings, and God's overwhelming peace. I hate having cancer,
but I love how close I've drawn to the Lord through it! <br />
This page is a blessing! Thank you for doing such a great job of uplifting
those with it and raising awareness for those who don't”</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-fareast-font-family: "Times New Roman";">“I
am stage 3b an have learned many things. So there is no 1 answer.. No tanning
booths. 2nd opinions. Get into a trial. Body scans. Never give up. Take every
2nd chance u get! Life is too short.... Live it to the fullest!!”</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-fareast-font-family: "Times New Roman";">“I
have learned that when my doctors said "I'm a challenging case" ( I
have no know starting point and a non mutated gene and 15 tumors throughout my
lungs and bones) that fighting for my life is the only choice I have.”</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-fareast-font-family: "Times New Roman";">“Educate
yourself and above all be your own advocate. Doctors work for you. Your allowed
and should get second opinions!! Never give up hope. Last but not least your
mind is very strong. Use is to your benefit don't let it get you down”</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-fareast-font-family: "Times New Roman";">“Skin
cancer is not just skin cancer” </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-fareast-font-family: "Times New Roman";">“I
to have walked this road with my husband down the road with the beast and he
lost his battle on Dec. 21, 2013. I have learned more about this cancer you
know the one "it's just skin cancer". I heard that so many times from
people I wanted to stand on the roof of Duke and scream it's not just skin
cancer it's taking the best man I have ever known from me and there is nothing
I can do. So i did the only thing I could and that was pray and care for my
husband. I to was a tanner never used any sun screen it make me want to stop
all these young girls and let them know just what can happen but they wouldn't
listen. I to have learned that no one is promised tomorrow so live life to the
fullest and tell the people around how you feel about because you may not get a
chance later. I am a 52 year old widow who now has to go through the rest of my
life without my life's partner thinks about that next time you crawl into that
tanning bed or lay in the sun with no protection. My life will never be the
same a neither will our 13 year old daughters.”</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-fareast-font-family: "Times New Roman";">“I've
learned that every second with my husband was a cherished blessing. I've
learned that this "just skin cancer" robbed me and this world of a
wonderful man. (March 23) I've learned never take an instant for granted, that
any second something can change your whole world. And I still HATE melanoma and
will forever preach the safe skin message.”</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-fareast-font-family: "Times New Roman";">“Fighting
melanoma has shown me how strong I am!! I fought for my family and I know I
want to share a message of HOPE!! 3 years NED, after 3 years.... thank you
heavenly father and my angels.”</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-fareast-font-family: "Times New Roman";">“I've
learned I'm stronger than I ever imagined. I've learned there can be BLESSINGS
along this journey. I've seen so many Blessings along my 14 year journey. We
just have to remember to breathe and open our eyes!”</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-fareast-font-family: "Times New Roman";">“I've
learned you have to fight for them to proactively biopsy spots cause one of my
tiny spots was growing and it was recently new. It was positive.”</span></div>
<div class="MsoNormal">
<br /></div>
<span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US;">“It's my mom's journey first, but our family shares it
with her. I've learned that she is tough, more so that I already knew. And I
thank God for giving her that strength, and for the knowledge He provides to
all her doctors and researchers </span><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US;"></span><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US;"><span style="font-family: "Times New Roman","serif"; font-size: 12.0pt; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US;">of melanoma therapies.”</span> </span><br />
<br />
Me again...melanoma is hideous, no doubt about it. It is from the pits of Hell. But we are cradled in the hands of God and God teaches us, not only in the rainbow times of life, but also in the storms...the hurricanes, tsunamis, and tornadoes of life. Learn from us.<br />
<br />
<i>charis</i><!--[if gte mso 9]><xml>
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</xml><![endif]-->Carol Taylorhttp://www.blogger.com/profile/17930711637707595995noreply@blogger.com0tag:blogger.com,1999:blog-320450055573507207.post-19554432584568014902014-03-25T15:34:00.000-04:002014-03-25T15:34:40.530-04:00Goodbye MelaBlack RoadSo I posted this graphic on Melanoma Prayer Center a couple of days ago:<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-q3z8gUlfaZo/UzHXbnUW5zI/AAAAAAAAAL0/Ihkwnt9ZuO4/s1600/good-bye.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-q3z8gUlfaZo/UzHXbnUW5zI/AAAAAAAAAL0/Ihkwnt9ZuO4/s1600/good-bye.png" /></a></div>
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
And Rich McDonald, the proprietor of <a href="http://hotelmelanoma.blogspot.com/" target="_blank">Hotel Melanoma </a>commented, <span data-ft="{"tn":"K"}" data-reactid=".2j.1:3:1:$comment595450773857643_1796136:0.0.$right.0.$left.0.0.0:$comment-body"><span class="UFICommentBody" data-reactid=".2j.1:3:1:$comment595450773857643_1796136:0.0.$right.0.$left.0.0.0:$comment-body.0"><span data-reactid=".2j.1:3:1:$comment595450773857643_1796136:0.0.$right.0.$left.0.0.0:$comment-body.0.$end:0:$0:0">"You ought to rewrite the song lyrics" and had a winky face. Well, that winky face was all it took, especially coming from him, since rewriting songs is what he's known for in MelaWorld.</span></span></span><br />
<span data-ft="{"tn":"K"}" data-reactid=".2j.1:3:1:$comment595450773857643_1796136:0.0.$right.0.$left.0.0.0:$comment-body"><span class="UFICommentBody" data-reactid=".2j.1:3:1:$comment595450773857643_1796136:0.0.$right.0.$left.0.0.0:$comment-body.0"><span data-reactid=".2j.1:3:1:$comment595450773857643_1796136:0.0.$right.0.$left.0.0.0:$comment-body.0.$end:0:$0:0"><br /></span></span></span>
<span data-ft="{"tn":"K"}" data-reactid=".2j.1:3:1:$comment595450773857643_1796136:0.0.$right.0.$left.0.0.0:$comment-body"><span class="UFICommentBody" data-reactid=".2j.1:3:1:$comment595450773857643_1796136:0.0.$right.0.$left.0.0.0:$comment-body.0"><span data-reactid=".2j.1:3:1:$comment595450773857643_1796136:0.0.$right.0.$left.0.0.0:$comment-body.0.$end:0:$0:0">So with my humblest apologies to Elton John, here ya go...</span></span></span><br />
<span data-ft="{"tn":"K"}" data-reactid=".2j.1:3:1:$comment595450773857643_1796136:0.0.$right.0.$left.0.0.0:$comment-body"><span class="UFICommentBody" data-reactid=".2j.1:3:1:$comment595450773857643_1796136:0.0.$right.0.$left.0.0.0:$comment-body.0"><span data-reactid=".2j.1:3:1:$comment595450773857643_1796136:0.0.$right.0.$left.0.0.0:$comment-body.0.$end:0:$0:0"><br /></span></span></span>
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<br />
<div class="MsoNormal">
<i><b>Goodbye MelaBlack Road</b></i></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
When are you gonna tone down<br />
When are you going to ban<br />
I shouldn’t have tanned on the bed<br />
I should have listened to my old man</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
You know you can't hound me forever<br />
I didn't sign up for you<br />
I'm not a present for the beast to open<br />
This homey’s too ‘live to sing the blues</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i style="mso-bidi-font-style: normal;">chorus:</i></div>
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<i style="mso-bidi-font-style: normal;">So goodbye melablack
road<br />
Where the melabeast creates strife <br />
You can't keep me in your deathgrip<br />
I'm going back to my life</i></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i style="mso-bidi-font-style: normal;"><span style="mso-fareast-font-family: "Times New Roman";">Back to the nat’ral pale skin
on my bod<br />
Toting my fave sunscreen load<br />
Oh I've finally decided my future lies<br />
Beyond the melablack road</span></i></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-fareast-font-family: "Times New Roman";">What
do you think black'll do then<br />
I bet that'll change all mel’s plans<br />
We'll make mel back off with some Yervoy and Gamma<br />
And catch black c with constant scans</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-fareast-font-family: "Times New Roman";">Don’t
want a cancer replacement<br />
There's too many cancers around<br />
Killers that ain't got mercy<br />
Prowling for others like I was: tanned brown</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="mso-fareast-font-family: "Times New Roman";">(repeat
chorus)</span></div>
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<br /></div>
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<br /></div>
<iframe allowfullscreen="" frameborder="0" height="315" src="//www.youtube.com/embed/ooEyJOdh8A8" width="420"></iframe>Carol Taylorhttp://www.blogger.com/profile/17930711637707595995noreply@blogger.com0tag:blogger.com,1999:blog-320450055573507207.post-23579019025010407232014-03-23T06:00:00.000-04:002014-03-23T06:00:01.310-04:00Melanoma Prayer Center Turns Three!This IS the day that the LORD has made! I WILL rejoice and be glad in it!<br />
<br />
It is also a day I never thought, three years ago, that I'd see. Oh, I thought I'd be here. I just never expected Melanoma Prayer Center on Facebook to still be around. I never thought people would find it and it keep growing and evolving.<br />
<br />
I never thought that <i><b>I</b></i> would grow and evolve so much. Maybe that's it. <b><i>I'm</i></b> the one who has grown and evolved. Every year at this time, I have blogged about MPC's birthday and you can find those here: <a href="http://letsgivethanks.blogspot.com/2012/03/year-in-life-of-melanoma-prayer-center.html">http://letsgivethanks.blogspot.com/2012/03/year-in-life-of-melanoma-prayer-center.html</a><br />
and here: <a href="http://letsgivethanks.blogspot.com/2013/03/melanoma-prayer-center-turns-two.html">http://letsgivethanks.blogspot.com/2013/03/melanoma-prayer-center-turns-two.html</a><br />
<br />
What I wrote in those are still true. This year I find myself pondering how much I really freaking hate melanoma and how much I wish there was absolutely no need for MPC and other sites dedicated to melanoma and other cancers. I hate the carnage and the death. The pain and the agony. The heartbreak and the never-knowing. I hate that far too many people are not listening to us and are courting their own date with the Beast. Hate to say it folks, but he's a keeper. Once you get him in your life, you just cannot get rid of him. Even if he seems to stop hanging around, he leaves little mementos so you never forget that he can pop back by at any time.<br />
<br />
As much as I have thoroughly grown to hate and despise this disease...and that's an unmeasurable amount of hate...I have also grown that much, and more, in love and admiration for my melahomies.<br />
<br />
If you do not walk melanoma road with us, you won't understand. You can't. What I have witnessed in these past three years is so far beyond astounding, heartwarming, uplifting, life-changing, God-transforming, I cannot begin to describe it.<br />
<br />
NO language on earth has the right words. And that's OK. God can take what words I can come up with and convey a small portion of what I would love to say if I could.<br />
<br />
And I, me, I get to be part of witnessing Christ in action time and time again. I get to see God at work in this world and in the lives of those who fight melanoma, those who love those who fight, and those who say "good bye" to the fight and to the fighter. Testimonies to love in action. The love of parent-child, spouses, siblings, other familial relationships, friends. People rising to the occasion...SOARING above the occasion...leaving the occasion behind in the dirt. And these are people who do things with tears in their eyes, hurt in their hearts, but damned...they are not about to let melanoma hold them down or back. They choose LIFE! They opt for LOVE and for GOOD every time. Those who are people of faith wear their FAITH on their sleeves and share it with all who will listen. They are all ages, all stages, both genders, a rainbow of skin tones and they all share a common determination to bring melanoma DOWN!<br />
<br />
Hear me and hear me loud and good. Melanoma is coming down.<br />
<br />
There is no other option.<br />
<br />
We're gonna fight so you don't have to.<br />
<br />
We're gonna kill the beast so that it doesn't kill more of us and it doesn't kill you.<br />
<br />
We're gonna say the prayers and hold onto faith because that's who we are.<br />
<br />
We've seen what God does through prayers and through us. We've SEEN it.<br />
<br />
We LIVE it.<br />
<br />
We TESTIFY to it over and over and over again.<br />
<br />
God stands with us. He works on our behalf. He's opening doors we stand in awe of opening.<br />
<br />
Time and time again.<br />
<br />
And we, me, the melanoma community. We get to be a part of it.<br />
<br />
A part not of our choosing to be sure.<br />
<br />
But it's where we are. This is our life but it's not all of who we are. Not by a long shot.<br />
<br />
We're your husbands and wives, your sons and daughters, your mamas and daddies, your brothers and sisters, your nieces and nephews, your grandsons and granddaughters, your neighbors and friends.<br />
<br />
We work, go to school, make bracelets and erect billboards, we get tattoos and write songs, we blog, speak, skydive, raise families, love passionately, and live fully. We walk the walks and raise money for research, we raise awareness and we educate. We fight the fights that demand to be fought and we pick our battles with the future in mind. And the present. And we don't forget the past.<br />
<br />
We are you and we don't want YOU becoming one of us.<br />
<br />
So, as MPC turns three, here's to three more. I'll be here as long as I have breath and as long as I have melahomies. That's just the way it is.<br />
<br />
<i><b>charis! </b></i> Carol Taylorhttp://www.blogger.com/profile/17930711637707595995noreply@blogger.com0tag:blogger.com,1999:blog-320450055573507207.post-8787948515217583032014-03-18T10:15:00.001-04:002014-03-18T10:15:18.354-04:00The NEED To DEMAND Scans In MelalandI've written many times before, in various posts, my strong belief that people of ALL stages should be scanned at least once a year in an effort to stay on top of their melanoma. If I ruled melanoma world, this would surely happen. Alas. I don't rule melanoma world, or any world for that matter. But, I'm not without a little bit of influence. Which I'm going to use.<br />
<br />
I feel a very strong, stepped-up sense of urgency to press all my melahomies, no matter where along the staging spectrum they reside, to demand to be scanned. There are a variety of options that I will leave to each to discuss with their doctor...a melanoma specialist (<a href="http://www.aimatmelanoma.org/en/aim-for-answers/path-to-getting-a-diagnosis/finding-the-right-doctor.html" target="_blank">here's Aim at Melanoma's link </a>to a list of melanoma specialist oncologists. Where you find them you will also find dermatologists and surgical oncologists who are melanoma and skin cancer specialists).<br />
<br />
Decide on MRI, CT scan, PET scan, CT/PET scan, x-rays...whatever you and your doctor are comfortable with. Prepare to be your own best advocate and prepare to push for what YOU need to stay on top of this disease and for YOUR peace of mind.You may have to push your doctor. You may have to get another doctor (make sure any doctor is a melanoma specialist and understand they will not all agree. Just because ONE doctor tells you something doesn't mean ALL doctors you see will tell you the exact same thing!) You may have to do battle with your insurance company. You may have to do battle with them every single time your doctor orders scans. OK. While this stinks and isn't how it should be, if this is how it is...do battle. And, if your doctor HAS ordered scans and they are denied, enlist your doctor's office to help you with your insurance company. They/the hospital should have someone on staff trained for this. Use them!<br />
<br />
OK. A word to doctors. I'm learning that some of you...not all of you, and for those who scan, I am truly grateful but you are few in number when it comes to scanning stage 2 melahomies and under...some of you...many of you refuse to scan my lower staged melahomies. You, of all people should have a basic understanding of this disease and how it works and that it has NO MO. None. Zilch. Nada. You know people with in situ (stage 0) melanoma can be stage 4 in a matter of months, years, or never. You know that the ONLY way to be sure of what melanoma is, or is not, doing is with a scan. You know the information that is learned with scans. You understand that more scans will call more attention to this dangerous disease. Help us call more attention to it! UGH! For crying out loud, order a yearly scan...your and your patient's choice of monitoring this way, but DO IT. Give my melahomey and your patient...this person who is trusting YOU with their LIFE this much, this peace of mind, this ray of hope.<br />
<br />
Frankly, I am beyond dismayed by many doctors. Melanoma specialists at that. I am hearing from too many mamas who have buried their children that their child's DOCTOR was the person who would not order scans. Even when begged. It doesn't just sadden me; it sickens me. These young people were stage 2 and feared spread. And it did spread and it killed and scans were ordered too late. I'm hearing this from spouses who have buried their better half because scans were finally ordered too late. You do know what happens to us when you order scans too late, don't you? Please, please, please, the minute you get a patient with a melanoma diagnosis over their head, get them scanned and scan every year. At least sit your patient down and discuss all scan options with them and if they do not want an annual scan, fine. Make them sign a waiver that you told them and they refused. But at least give them an informed option. Too many aren't even given an option.<br />
<br />
Remember doctors, whether you provide scans for ALL patients or not...this melanoma is not YOUR melanoma and unless you live with your own diagnosis, you do not and cannot possibly understand what living with this disease does to us. It is your job to help and do no harm. That's what you swore to do. Do your job. Do no harm. Help. Scan.<br />
<br />
And now, insurance companies. I know you've got rules and guidelines. I know our local agents have to do what they're told. I don't know what it will take but I'm telling my melahomies to fight you tooth and nail if they have to in order to get the scans their doctors order and that you all too often deny. Really now, all companies and corporate entities are made up of real-life, flesh and blood people. Get in touch with your inner humanity and stand with us instead of against us. For those of you who DO pay for scans and do it without questioning and making us fight...BLESS YOU! Help us with your fellow insuring companies.<br />
<br />
It makes good business sense and will save you money in the long run to pay for our scans upfront. I know the rate of biopsies is rising. And I know the rates of scans will rise. That's the nature of this disease right now. Until people listen and make life changes, our rates will rise. But, eventually those rates will come down. Right now, we're in a rise. So rise with us. You know all to well how costly this disease is once it hits stage 4. It will be far cheaper to pay for scans NOW and catch much disease early, than to let it go unmonitored accurately and let it get out of control in some people and them enter into stage 4. I'm hearing from far too many who are scared because you're denying their doctor ordered scans. Get educated about melanoma.<br />
<br />
And...learn from our fellow cancer road travelers who have colon cancer. While melanoma is rising, colon cancer is on the decline! Hallelujah and praise the Lord! Why the 30% decrease in colon cancer rates, you may ask? Because more people than ever before are getting colonoscopies as a preventative measure and precancerous lesions are caught and removed EARLY! Polyps that are cancerous are caught and removed while they're tiny before they become huge problems.<br />
<br />
Over 10 MILLION people a year get colonoscopies and you pay for those and now everyone is reaping the benefits! Yes, many more millions than that get scans each year, but only a small percentage are related to melanoma.<br />
<br />
We want to reap benefits, too. You can make that happen. And I'll tell you like I told the doctors. Unless you have your own melanoma diagnosis, of any stage, as part of your life, you do not and cannot possibly know what this disease does to us. Want more cost benefits? If you pay for annual scans regardless of stage...you will be able to stop paying for some to take anxiety meds and anti-depressants. Many take those because of what living with this diagnosis does to their nerves. You'll get to stop paying for some to see therapists to help them cope. Being able to get scanned and knowing they are staying more on top of this disease will help in more ways than you can possibly imagine.<br />
<br />
I'm hoping and praying that more and more of my fellow travelers on melanoma road will make themselves heard, will advocate for themselves and for their loved ones, and really start to demand proper treatment at all levels and that starts with demanding scanning.<br />
<br />
If more and more make those demands, more and more will see results.<br />
<br />
But we can only do so much. We can demand.<br />
<br />
Will you hear?<br />
<br />
Will you help?<br />
<br />
Or will you harm and possibly kill?<br />
<br />
Please. Stand with us.<br />
<br />
We're counting on you.<br />
<br />
Remember...one day YOU may hear that YOU'VE got melanoma or that your spouse or your child does or your parent or your sibling...then what? Will you or they have to live with the same rule you've imposed on us? I strongly doubt it.<br />
<br />
You'll get it then because you will have gotten it.<br />
<br />
Make a difference NOW. Before that happens.<br />
<br />
Thank you. I really Do want to rise up and call you "blessed."<br />
<br />
<i>charis</i>Carol Taylorhttp://www.blogger.com/profile/17930711637707595995noreply@blogger.com0tag:blogger.com,1999:blog-320450055573507207.post-67305193866058741052014-03-07T10:40:00.001-05:002014-03-07T17:31:22.714-05:00Well, We Had A Little Talk With The AADLast night, as I write this, several of us from around the melanoma community had a phone conference with representatives of the <a href="http://aad.org/" target="_blank">American Academy of Dermatology</a>. They initiated it and invited us...Oops! Let me give a little history to add the context...<br />
<br />
We in the melanoma community take the whole month of May as "Melanoma Awareness Month" and we do everything we can to educate, honor, and remember during that month. Black is our color. We wear it, we have a black ribbon. It's who we are. Melanoma literally means "black tumor." BLACK is our color. And we stand by that. And yes. Color matters. Just ask the people of Pink Nation. We want "black" to be seen and understood to mean "melanoma" just like we see "pink" and no longer think of "little girls" but we think of "breast cancer."<br />
<br />
The American Academy of Dermatology takes the month of May as "Skin Cancer Awareness" month and designates the first Monday as Melanoma Monday. And last year, they used ORANGE for their color for skin cancer and carried that over on Melanoma Monday. Their slogan was "Spot Orange" and they encouraged their people to wear orange. Their website and Facebook page had pictures of (presumably) dermatologists having parties in orange and we were steamed. "Orange" is simply NOT the appropriate color for any skin cancer and it's especially offensive when it's promoted for melanoma since we HAVE a color and it's BLACK. <br />
<br />
Many of us in the melanoma community on Facebook, myself included, posted on their page numerous times asking them to stand with us. To promote black and show us some respect. We did everything we could think of and we were always met with a canned response from them. We thought we got nowhere. They had a FB event that garnered a little under 1700 virtual attendees. WE had one that had a little over 7200 virtual melahomies attending. We have the numbers. Melanoma is our disease. And we wanted our doctors...our dermatologists who are are usual first-line of defense to stand with us and it hurt tremendously to think that they didn't.<br />
<br />
Well. It seemed like they weren't listening. BUT THEY WERE! Recently several of us, including Tim Turnham from the <a href="http://www.melanoma.org/" target="_blank">Melanoma Research Foundation </a>and Samantha Guild from <a href="http://www.aimatmelanoma.org/en/index.html" target="_blank">Aim at Melanoma</a>, were invited to the phone conference mentioned in the first paragraph of this post. The AAD not only listened, they took NOTES! They followed through by making real changes! And they brought those changes to the table just last night...the night of March 6, 2014 when we held our phone conference.<br />
<br />
I will be the first to say I was highly skeptical and cynical of their intentions when I received my email invitation. I knew they had their webpage up for Melanoma Monday and while there was some black, there was also orange. I fully anticipated they would tell us what they had done and expect us to rubber stamp their efforts and that would be that. They would have reached out to us and fulfilled their word from last year when they said we would be included this year.<br />
<br />
Thank GOD, and I do mean thank GOD! they proved me wrong! Five other attendees have written up last nights meeting and I highly suggest you read their posts to get a full idea of what happened. I am EXCITED!<br />
<br />
Read Al Estep's <a href="http://blackispink.blogspot.com/2014/03/a-conference-with-american-academy-of.html" target="_blank">Black Is The New Pink post</a>.<br />
<br />
Read Susan Hayes' <a href="http://jilliansjourneywithmelanoma.blogspot.com/2014/03/standing-united-with-aad.html" target="_blank">Jillian's Journey with Melanoma--A Mother's Story</a> post.<br />
<br />
Read Timna Understein's <a href="https://www.facebook.com/notes/respect-the-rays/american-academy-of-dermatology-tells-us-you-were-heard/570221109751719" target="_blank">Respect the Rays note </a>on Facebook.<br />
<br />
Read Rich McDonald's <a href="http://hotelmelanoma.blogspot.com/2014/03/melanoma-monday-2014.html" target="_blank">Hotel Melanoma</a> post.<br />
<br />
Read Donna Helm Regen's <a href="http://melanoma-mama.blogspot.com/2014/03/social-media-black-ribbon.html" target="_blank">Melanoma Mama</a> post.<br />
<br />
We DID it fellow travelers on melanoma road! We stood united last year and we were heard!<br />
<br />
I'm not going to rewrite the above perfectly great posts about last night. They covered the bases accurately and fantastically. There's no need for me to put what they say in my own words.<br />
<br />
No. What I want to do is highlight a triumph and encourage us all to continue working together and shining our lights, <u><i><b>together</b></i></u>, on this very dark disease. It can only serve to strengthen us when we stand and work together. Together with the AAD. Together with the MRF. Together with Aim. Together with each other.<br />
<br />
Don't lose heart. Even when it seems like no one is listening...they ARE!<br />
<br />
WE make a difference!<br />
<br />
YOU make a difference!<br />
<br />
God is in our midst and with God ALL things are possible.<br />
<br />
And "ALL" means <b>ALL</b>!<br />
<br />
I'm proud of each and every one of you.<br />
<br />
Thank you for sharing your journey with the likes of me.<br />
<br />
God bless!<br />
<br />
<i>charis</i>Carol Taylorhttp://www.blogger.com/profile/17930711637707595995noreply@blogger.com0tag:blogger.com,1999:blog-320450055573507207.post-3606945958388929232014-03-02T20:15:00.000-05:002014-03-02T20:15:16.642-05:00Mt. Pisgah, Here I Come! Well...not any time soon, mind you. I hope. But my plans are made.<br />
<br />
Back when I was still 12 (the summer before I turned 13), my family went to the beautiful mountains of NC for our two week vacation. While there are a lot of memories I <b><i>could</i> </b>share, the one pertinent to this post is the memory of my Daddy shooting a golf ball of the top of Mt. Pisgah. There's not much I can do to top that...except...<br />
<br />
When I die, be cremated and my ashes be scattered off the top of...Mt. Pisgah! <br />
<br />
Seriously. I've told everyone who can make that happen that that's what I want.<br />
<br />
Originally I planned to be an organ donor, then have what was left of me donated to science, and then when science was through with me give me back to my family for cremation and a trip to the mountains. Well, melanoma took care of the organ donation part but stepped up the desire for science to have all of me.<br />
<br />
I do want folks to gather for a memorial sing-along service. At some point. Doesn't really matter to me when that takes place, maybe at Mt. Pisgah those gathered will sing my favorite hymns, read Psalm 23, say a prayer and blow me off...the mountain.<br />
<br />
My two grown kids will have the opportunity to blow me off. Or blow me away.<br />
<br />
I have told my daughter that if she just can't bring herself to take me to the mountains, that she can scatter me somewhere in Conway. I don't particularly relish the idea of sitting in a jar on somebody's mantel and collect dust. I may eventually wind up in a yard sale and an unsuspecting person may take me to their mantel...and so on and so on and I may have to come back and haunt somebody.<br />
<br />
I've also told her that if she just can't bring herself to have me cremated then she can bury me. Shoot. My parents have already bought plots for all of us. She can put my ashes in the plot. Whatever they do, I'll never know. I don't think anyway. (insert annoying smiley face here)<br />
<br />
Yes. I've discussed my demise with my children and right at this moment, as I write, they are 32 and 23. I began talking with them about this long ago. As a matter of fact, we've always been open about death. Both my parents have always been open about death. It's a part of life. Not a welcomed part, mind you. Not something I'm thrilled to think about. But it will happen. Not even the richest person on the planet can buy their way out of this. No one can cheat death forever.<br />
<br />
Since it's a fact of life, I want my children to know we can talk about it. Maybe it's the family I grew up in in the rural South. Both my maternal Grandma and my Daddy's oldest sister...both sides of the family...kept stacks of family pictures they would each pass around during visits. Nice picture. Nice picture. Nice picture. Grave-site. Person looking up from their casket. Another open casket picture. Nice picture. And on it goes. Lands.<br />
<br />
This weekend my son and I were discussing this. He's my 23 year old who thinks he's NOT going to Mt. Pisgah and dump me. He'll just put my ashes in a trash bag. He had visions of my Mt. Pisgah vision and we had two different visions. He thought there would be a HUGE amount of ashes and he would literally throw them off the mountainside and they would cover unsuspecting people below and they would walk around hauling "me" with them. He kinda found that thought repulsive. Go figure. (insert annoying smirk)<br />
<br />
We laughed. A lot. He gave me various scenarios of what he would do with my ashes. And I would tell him that I knew he would not do that to me. I'm his mama and he does love me. He'll show respect, and maybe even shed a tear, when it happens. Heck, he'll MAKE sure I'm taken to Mt. Pisgah and he'll make annual pilgrimages to see the spot I was scattered at. I told him I didn't really want to be thrown in the air and land where I may. My mourners can dig a hole and pour me in it. Mark the place with a handmade wooden cross.<br />
<br />
Again, I won't know what really becomes of me once I breathe my last. I plan to close my eyes here and open them in Glory. The vistas there will be so far superior to earth's Mt. Pisgah that I'll probably not give that another thought.<br />
<br />
But I do hope they go, and take me with them even if they bring me back to Conway and stick me in the pre-bought plot in the town cemetery.<br />
<br />
And maybe hit a golf ball. Or two.<br />
<br />
That will top their Granddaddy.<br />
<br />
And life goes on...<br />
<br />
<i>charis</i><br />
<br />
<br />Carol Taylorhttp://www.blogger.com/profile/17930711637707595995noreply@blogger.com0tag:blogger.com,1999:blog-320450055573507207.post-52728575422397204052014-03-01T13:35:00.000-05:002014-03-01T13:35:17.915-05:001 Corinthians 13 for Pastors and Worship Leaders<!--[if gte mso 9]><xml>
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1
Corinthians 13 for Pastors and Worship Leaders</div>
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<br /></div>
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If I can quote Marva Dawn and Acts
2 passages but do not have love, I am a know-it-all pastor and worship leader
full of hot air.<span style="mso-spacerun: yes;"> </span>And if I have abilities
beyond belief, and lead workshops and write passionately about worship and have
much faith in my God-given talents so as to grow ministries, but do not have
love, I am nothing.<span style="mso-spacerun: yes;"> </span>If I give away my
library and hand over all my equipment, yea, even my very self and all the
gifts I hold dear, so that I can brag about my selfless giving, even as I am
desecrated at Church Council meetings, but do not have love, I gain nothing.</div>
<div class="MsoNormal">
<span style="mso-tab-count: 1;"> </span>Love deals
kindly and is patient with choirs and congregations who don’t see things my
way.<span style="mso-spacerun: yes;"> </span>Love doesn’t wish it had another
church’s pastor/worship leader or brag about multiple programs or strut about
like a peacock when “<i>I”</i> know best worship practices and “<i>you”</i> do
not or act ugly.<span style="mso-spacerun: yes;"> </span>Love does not rule with
an iron scepter and insist on “my way or the high way;” it does not bellyache
or hold grudges; it is not glad when feelings get hurt or lies are told or
gossip is spread but holds to a higher standard and always acts above board and
takes the high road.<span style="mso-spacerun: yes;"> </span>Love bears all
things, believes all things, hopes all things, endures all things.</div>
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<span style="mso-tab-count: 1;"> </span>Love never
ends.<span style="mso-spacerun: yes;"> </span>Books and best practices will become
dated and change; my talents will diminish with age and one day cease.<span style="mso-spacerun: yes;"> </span>The knowledge of worship I have in my brain
will, also, one day die.<span style="mso-spacerun: yes;"> </span>I do not know
everything and I will never know everything; but God, alone, does.<span style="mso-spacerun: yes;"> </span>My knowledge will come to an end but God’s
will last forever.<span style="mso-spacerun: yes;"> </span>God is the only one
who can change hearts to truly worship, I cannot.<span style="mso-spacerun: yes;"> </span>When I was a know-it-all pastor and worship
leader, I thought it all rested on my shoulders and that I had all the answers
and that I knew what was in my congregation’s and choirs’ hearts and lives, but
as I grew spiritually I came to understand that I cannot know fully peoples’
hearts and lives even as I often do not fully know my own.<span style="mso-spacerun: yes;"> </span>God alone knows us fully.<span style="mso-spacerun: yes;"> </span>That I now understand.<span style="mso-spacerun: yes;"> </span>Lord, grant that faith, hope, and love may
abide in me and that I may reflect these things to the people of yours you have
given me to serve and help me be ever mindful that the greatest of these is
love.<span style="mso-spacerun: yes;"> </span>Your love.</div>
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<br /></div>
<div class="MsoNormal">
(I wrote this a few years ago, found it just now when going through some old files, and thought it needed preserving in blog format and sharing).</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i>charis</i> </div>
Carol Taylorhttp://www.blogger.com/profile/17930711637707595995noreply@blogger.com0tag:blogger.com,1999:blog-320450055573507207.post-51007347191524770042014-02-21T11:16:00.000-05:002017-01-12T14:08:21.825-05:00Pediatric Melanoma...Yes, There IS Such A Beast!Melanoma knows no limits or boundaries of any kind. It has been known to cross the placenta of a <a href="http://addisonsarmy.org/" target="_blank">stage 4 warrior and be born in her baby</a>...and kill that baby before she was two years old. Her mother died before she did...again, of melanoma.<br />
<br />
So while we now understand that a baby can be born with melanoma, there is something else that is not understood by many, and that is that children can get melanoma. Children. Minors. Our youngest members of society 18 years and younger. Two years old. Nine. Twelve. Anywhere along the 1-18 year spectrum. Anywhere in the world! It's happening and with increasing frequency.<br />
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I'm finding that while many adults do not grasp this can happen to their children until it does, I'm also learning those who are oncologists and oncology nurses do not understand children can get this disease. And, just as in adults, pediatric melanoma is color blind. This is NOT a Caucasian's disease.<br />
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Just as with adult onset melanoma, there is much to be learned about pediatric melanoma. But there are a few misconceptions I'd like to clear up right now.<br />
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One. Often these children are too young to have been in a tanning bed...strike that root cause off. And they've never been sunburned either. Strike that root cause off the list. They DO practice even safer sun once diagnosed, but UV burns are not the cause of pediatric melanoma. Genetics seems to play a large role. And so does the great unknown. Do NOT assume that if your child has never been sunburned or been in a tanning bed that he or she cannot get melanoma. I know some parents who will beg to differ with you and will set you straight.<br />
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Two. Pediatric melanoma often DOES NOT present the same way adult onset melanoma does. Yes, look for the ABCDEs of moles and other places, but look for pink spots that look like warts. Look in their hairline and on their scalp. If you, as a parent, notice a new spot, growth, or changing place that you do not like the looks of, get it removed. ASAP. I don't care what the doctor says. Seriously. This is not their child. It is yours and that place needs to come off and be sent to pathology. Hopefully once lab results are in you can breathe a sigh of relief. But, if it's melanoma, you need to know! And, you need to get your child in the hands of a pediatric melanoma specialist. Get your child to St. Jude or to MDA. Contact me and I'll help you and put you in touch with other parents going through the same thing and they will help you get your child where he or she needs to be.<br />
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Three. This is striking children 18 years and younger with increasing frequency. Children of ALL skin tones and I cannot stress that enough. ALL skin tones...from the palest to the darkest and all in between. <br />
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<a href="https://www.mdanderson.org/cancer-types/childhood-melanoma.html" target="_blank">MDA has a great page</a> on their site dedicated to pediatric melanoma (look at the 6 tabs underneath the "Childhood Melanoma" heading).<br />
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<a href="http://www.stjude.org/stjude/v/index.jsp?vgnextoid=3d517e1dc7b8f310VgnVCM100000290115acRCRD&vgnextchannel=a411b0cf6626f310VgnVCM100000290115acRCRD" target="_blank">St. Jude has info</a>.<br />
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<a href="http://abcnews.go.com/Health/pediatric-melanoma-difficult-diagnosis-cases-rise/story?id=19774895" target="_blank">Here's an article that discusses pediatric melanoma</a>. Pay special attention to page two where it discusses what it looks like in children.<br />
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We're in a changing world. More and more children are being diagnosed with cancer. Melanoma diagnoses are on the rise worldwide among ALL demographics...including minor children.<br />
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Be proactive. I don't want to scare you with this possibility...but I'd rather scare you now than for melanoma to terrify you, and rock your child's world and your family's world, later.<br />
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<i>charis</i><br />
<br />Carol Taylorhttp://www.blogger.com/profile/17930711637707595995noreply@blogger.com0tag:blogger.com,1999:blog-320450055573507207.post-26878216593237450852014-02-05T17:49:00.001-05:002014-02-05T17:49:35.504-05:00Miss Mary, a 98 year old, 46 year melanoma SURVIVOR!(Note: this is also a note on Melanoma Prayer Center on Facebook)<br />
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Today, February 5, 2014, I went with my dear friend and Warren Plains
United Methodist Church Board Chair to a local retirement/nursing home.
There was a woman there, Miss Mary, that she wanted me to meet. She
told me Miss Mary is 98 years old, sharp as a tack, and had had
melanoma. She had me at "98."<br />
<br />
Well, Miss Mary is a trip!
Laughing, smiling, recalling the stories of earlier years that my friend
wanted her to tell. She's a real day brightener. And then my friend
told her why she wanted us to meet. And Miss Mary's tone changed a
little and she got serious.<br />
<br />
She looked up at me from her
chair and told me, "They never gave me any medicines." And then she
started running her right hand up and down her entire left side and she
said, "They cut me all up and took out all my lymph nodes back in 1968."<br />
<br />
That
was all she said about it. It was in the past...way in the past. She
talked about the 22 years she later spent looking after her husband
after he suffered a most debilitating stroke. She kept him at home and
waited on him. For 22 years. That was how she wanted it. God gave her
the strength and grace she needed and she'd do it all over again because
they were <span class="fbUnderline"><strong><em>TOGETHER!</em></strong></span> There's no human way I can possibly write how she said that word, "together."<br />
<br />
I
couldn't help but think about her on my way home. For them to have
removed all her lymph nodes and cut her up like that, she must have been
somewhere in the stage 3 range. In 1968. No meds, at all.<br />
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And here she is. 46 years later. At 98.<br />
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A survivor!<br />
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And a true story of HOPE!Carol Taylorhttp://www.blogger.com/profile/17930711637707595995noreply@blogger.com1