Tuesday, December 18, 2012

How Many More Have To Die?

Before the medical profession wakes up and stops writing prescriptions for people to use tanning beds to kill them?

Before legislation, around the world, gets rid of ALL tanning beds in home, businesses, online, everywhere?

Before people, of all ages and skin tones, start paying attention to all changes on the surface of their bodies and get them checked immediately?

Before people, of all skin tones, get sun-smart?

Before people, of all skin tones, decide to love the skin they're in and RUN away from tanning beds, as fast as they can and not listen to lies from the tanning industry?

Before the tanning industry decides lives are more important than dollars?

Before doctors in the medical profession, who ARE NOT melanoma specialists, start referring ALL patients diagnosed with melanoma TO the nearest melanoma specialist?

Before ALL doctors stop telling patients to "let's watch that place and see what it does" instead of removing it and pathing it?

Before ALL people who work in a doctor's office and schedule patients understand when someone calls and says a mole is changing, they need to be seen asap and not put off a few months?

Before ALL doctors, melanoma and non-melanoma specialists alike, start getting ALL people with a new melanoma diagnosis SCANNED, regardless of their initial stage?

Before the insurance industry INSISTS on all their clients with a melanoma diagnosis GET SCANNED, regardless of stage?

Before people realize melanoma isn't just skin cancer, doesn't need skin to get started in, isn't anything to mess around with, can't be cut out and all is well, and can kill you?

Before some in the medical profession realize that?

Before some in the medical profession decide our lives are more important than their pride?

Before ALL in the medical profession understand this is NOT their life, fight, and possibly death, but OURS?

Before ALL in the medical profession are willing to fight as hard for us as we are?

How many more have to die deaths that many of which could have been prevented?

Too many.


Friday, December 14, 2012

Misconceptions In Melaland & What To Do About Them

The misconceptions kinda revolve around a big preconception--which is wrong--and that is that melanoma can be cut out, give a big high five to the doctor, pay the bill, and all will be well when the stitches are removed. After all, it is just skin cancer! Right?! No big deal. The only time you really have to worry is if you get staged in the 3-4 range. As long as it's less than 3, noooooooooooo biggie!

And heads in melaland shake in dismay and disbelief.

People with stage 2 melanoma know very real fears and concerns. And folks can understand that. I mean, they are right under stage 3...so, we'll give them that. But not too much. (And I'm using my sarcastic voice and imitating those that just don't get it). The reality is that people with a stage 2 diagnosis have well-grounded fears which are heightened by the fact that, usually, doctors don't do scans for stage 2s, though some do. People with a stage 2 diagnosis get it. They know their reality even if the people around them do not.

Frankly, it's the people with stage 0 and stage 1 diagnoses that concern me. So often, they themselves don't get the seriousness of this diagnosis. They can fall victim to the idea that it has been cut out and they're OK now. They may even use the "cure" word. The medical profession does absolutely nothing proactive for stage 0s and 1s like scans. Some of the lesser-informed in the medical world can, also, throw around the "cure" word.

And, truthfully, many will heal and be OK. They'll never have another melanoma to deal with. Some will continue to have more places on their skin that have to be removed...some of these will be more melanomas, some will be other skin cancers, some will be nothing. They aren't "cured" because there is no cure for melanoma and also, because it can come back. And come back stage 4.

Yes. Stage 0 and stage 1 can come back stage 4. It can take decades, or, it can take months. I'm seeing it. I'm hearing the stories. Granted, I'm seeing and hearing only a very small tip of a gigantic iceberg, but experience has taught me that where there is one, there are more. Where there are a few, there are many. While I, personally, know of one person whose stage 0, zero, melanoma roared back stage 4 in a short matter of time...that means there are others around the world this is happening to. It happens. People who have been diagnosed with stage 0 melanoma, do not let your guard down.

While I personally know of around 10 people whose stage 1, one, melanoma roared back stage 4 (some it took a while and some it didn't)...that means there are many more around the world this is happening to. It happens. People who have been diagnosed with stage 1 melanoma, do not let your guard down.

These are people that I know their stories. There are hundreds of people I come in contact with, dealing with melanoma, and I don't know their stories.

My issue is, if I'm seeing it, why isn't the medical profession seeing it and taking better, more proactive steps with their patients with stage 0 and stage 1 melanoma? Why aren't insurance companies insisting on scans immediately upon any diagnosis? Melanoma is far easier and cheaper to treat the earlier it is caught. Once it hits stage 4, it's a nightmare of monumental proportion...much of which may have been prevented if better standards were in place.

Standard number one should be: upon any melanoma diagnosis, of any stage, by any doctor...refer patient immediately to the nearest melanoma specialist. ASAP means ASAP!

Standard number two should be: melanoma specialist has full-body scans ordered for the patient, regardless of stage. Full-body means full-body...not just chest x-rays or brain scans. Perform every year or two...I'll let the patient and doctor confer on that one. But the minimum standard will be every two years. This is a disease that must be stayed on top of. That's imperative.

Standard number three should be: deciding on a uniform practice of what to do about lymph nodes when one or more light up the screen. Remove some or all? Ugh!  Doctors in the same facility can differ on that one. Needless to say, doctors around the world differ. My personal preference is to remove them all. Don't leave behind any nodes where that renegade cell may be hiding. It won't completely remove all chances of "no return," but it sure is a good start.

Standard number four would be: burning ALL tanning beds in home, office, business, you name it.

Standard number five would be: full-body skin checks, done by skin cancer specialist dermatologists once a year for people with no history of skin cancer, and twice a year for people with a history. During these visits the doctors will inform their patients of safe-sun practices for them and their children.

Standard number six: drop "just" from the name of any skin cancer. Skin cancer is cancer. You can't cut it out and be fine. Having one increases the chances of having any of the others. All are scarring and disfiguring. And, newsflash, though melanoma is considered to be "skin cancer" (which I strongly object and have blogged about...search this site for those posts)...it is not the only one that is potentially fatal. Not to mention the fact that there are links to melanoma and breast cancer, and melanoma and pancreatic cancer, and melanoma and other cancers. Established links.

Standard number seven: love the skin you're in. Don't tan it, bleach it, bake it, or broil it. Take care of it. Be good to it and it should be good to you. Though there are no guarantees.

Standard number eight: learn there are no standards when it comes to melanoma. It behaves differently in everybody. It doesn't care who you are, how old you are, what skin color you have, or what gender you are. It is an equal opportunity cancer. It can be fatal. If "melanoma" has been attached to you, know your enemy, know your God, and get support. Stay vigilant. Start getting your children's skin checked by a melanoma specialist dermatologist...they now have this disease in their family history.

Standard number nine: don't let melanoma define you. You define melanoma. Live your life and love it. You have cancer. Don't let it have you. Learn what's important and what isn't. Love the ones that matter and let go of toxic people. Forgive, move on, take time to smell the roses and let the thorns teach you. Life is good. Life is a gift. Life is short. Life has purpose and you have meaning.

Standard number ten: Pray. Draw near to God and God will draw near to you. Be blessed and be a blessing.


Monday, December 10, 2012

A Study On The Health Benefits Of Cheesecake

You know the old adage, "If you want something done right, you have to do it yourself!" So, here I am, studying the health benefits of cheesecake.

I have mentioned at various times and places that such a study should be done. We study everything else, so why not "cheesecake"?

Let me state my credentials. While I haven't stayed at a Holiday Inn Express, I rely on this: Back in my first year of college, that would be the 1978-79 academic year, I was a declared Biology major. Currently, I have a BA in Religion as well as one year of Advanced Course of Study at Duke (which means I graduated from Basic COS) and am a Local Licensed Pastor in the United Methodist Church. I've got science AND religion covered!

A word of warning to any student who may come across this completely serious study and wish to cite it in a paper. Probably not a good idea. I have received no Federal Funding for this important project. It is completely unbiased, unpaid for, and the only "Think Tank" involved is my brain.

So, let's grab a fork...uh, the recipe, and study. This is the one I use.

Philadelphia New York Cheesecake  (complete recipe)

6 Honey Graham crackers, finely crushed (about 1 cup)

3 Tbsp.  sugar

3 Tbsp.  butter, melted

5 pkg.  (8 oz. each) PHILADELPHIA Cream Cheese, softened

1 cup  sugar

3 Tbsp.  flour

1 Tbsp.  vanilla

1 cup (8 oz.) Sour Cream

4 eggs
(An important note in case you actually make this: the first three ingredients, crumbs, sugar, and melted butter, are the crust...do not mix those in with the rest!)

This will bake, slowly, in a 325 degree oven for a little over an hour. The constant heat will refine the goodness and torture the badness. The goodness will remain while the badness is killed.

Now, we can look at this right off the bat and see "sugar" and "eggs", and not much "sugar" at that. Both ingredients come from nature and have health benefits unique to themselves. Both were in that wide realm of stuff pronounced "Good" at the beginning, before "The Fall." They have, both, been given a nod by God and by science. To be fair and impartial, too much sugar can have its downside.

Butter. Dairy. Food group.
Cream cheese. Cheese that has been creamed. Dairy. Food group.
Sour cream. Cream that has been soured. Dairy. Food group.
Flour. Ground from wheat. Grain. Food group.
Vanilla. From vanilla bean. Vegetable. Food group.
Honey graham crackers. Honey. From bees. Just plain good and nutritious.
This is the list of ingredients of Honey Made Honey Grahams. Lots more flour. There's some iron in there and some calcium. No problems there.

So, my unbiased and completely unfunded, but not "unfunned", study reveals, conclusively, that Cheesecake is made up of all natural ingredients blessed by God and by science...it has its bases covered...and that it is a necessary component of a healthy diet.

I could not be more pleased with the results of this study.

Life's short. Eat cheesecake.

And be grateful!

Saturday, December 8, 2012

Prayers For All In Cancer-World

Seventeen days from today it will be Christmas. So, here is my "Prayer Countdown" beginning today:

Prayers for Healing. Lord, in Your mercy...

Prayers for Strength. Lord, in Your mercy...

Prayers for Hope. Lord, in Your mercy...

Prayers for Mercy. Lord, in Your mercy...

Prayers for Wisdom. Lord, in Your mercy...

Prayers for Peace. Lord, in Your mercy...

Prayers for Courage. Lord, in Your mercy...

Prayers for Goodness. Lord, in Your mercy...

Prayers for Patience. Lord, in Your mercy...

Prayers for Joy. Lord, in Your mercy...

Prayers for Encouragement. Lord, in Your mercy...

Prayers for Relief. Lord, in Your mercy...

Prayers for Victory. Lord, in Your mercy...

Prayers for Faithfulness. Lord, in Your mercy...

Prayers for Wholeness. Lord, in Your mercy...

Prayers for Families. Lord, in Your mercy...

Christmas Eve Prayers. Lord, in Your mercy, people all over Your creation look to You this night with anticipation, expectation, and our hopes and dreams are wrapped in many things. There is fear that can come with the night and a dread that this night will not give way to life. Many who have cancer in their world are not filled with Your joy and peace tonight. But You reside in this world with us and You know each heart. You know each life and You are THE Light that shines, boldly, into our dark night. It is at night that the angels light up the dark skies and fill the darkness with singing; tune our ears to hear their songs and our hearts to join in their hymns of praise. As Your Light and Hope pierce our darkness, remember that Your children are all over the map spiritually, physically, and emotionally tonight. Fill each with hope for a bright tomorrow and an assurance that You hold us all in Your amazingly tender hands. Thank You, Lord, for the Promise tonight holds! Amen and Amen!

Christmas Day Prayers. Lord, in Your mercy, the day dawns and this is the Day that You have made! We will rejoice in Your Promises that are being fulfilled! We will be glad that You are among Your people. We will rest knowing that God Is With Us, Emmanuel. Cancer is a dark blot, but You are King! For unto us a child has been born who Is Christ the Lord, and we will stand and join all angelic choruses on earth and in heaven. We will continue praying, living, breathing, dying, hoping, singing, continuing, growing, believing, dancing, lifting, soaring, holding, and doing. Christmas speaks to life, hope, and peace and those are always Your final words to us, O Lord, and we thank You! Amen and Amen!

All Prayers Wrapped in Much Love

Lord, in Your mercy, thank You for hearing Your children praying. Please grace our lives with true riches from Your Heavenly Throne and we will be satisfied. Thank You, Lord, and Merry Christmas! Amen and Amen!

Thursday, November 29, 2012

A Christmas Idea That Keeps Living

A skin check! Or get that bothersome place removed (not frozen or shaved...removed and pathed)!

Not your usual suggestion and possibly not what you expected. It certainly won't fit under a tree. But I want you to be around next Christmas and the one after that. Having that skin check, just like an annual physical, can help ensure that happens.

Can't afford it? Not insured? Going to go in debt buying junk that will get broken, lost, rust, or suffer from rundown batteries and then shoved into the back of the closet never to be seen again?  Seriously, if you say you can't afford it, I say you can't afford not to. Find a way. Cut back on some of the frills, fluff, and froufrou and tell your family you're giving them you for another year.

Have a child that needs a skin check? Now's a good time for that. Again, it's probably not on any list they want Santa to see and fill, but, hey!, a skin check is good for the naughty and the nice.

And, please, if you need a place removed, get it removed and sent off to pathology. You know if there's something you've been watching grow, darken, change. If it's also bleeding, it really needs to come off asap! Scared of needles and procedures? Decide you like to live and you can do what you need to do. While you're being scared and waffling, if that place has any kind of cancer in it, that cancer is growing and possibly spreading.

Nobody wants to be told "You have melanoma," but if you have melanoma then those are the words you need to hear! Merry Christmas! Hearing those words may just save your life.

If you've ever had a tooth pulled as an adult, delivered a baby, or had any kind of surgery, then you can do this.

If you've never done any of that and are filled with dread, well, there will be needles and some pain, stitches, recuperation, but it's still a small price to pay to live.

It's a small price to pay to have a Merry Christmas this year and, hopefully, next year.

Parties, toys, technology gizmos, new clothes...cha-ching! Big bucks!

Skin check by someone who knows what they're doing...priceless.

Giving yourself a fighting chance by getting that place removed...priceless times infinity.


Tuesday, November 27, 2012

2013 Walks/Runs And Other Events For Melanoma Research

People want to know: "What's happening in my state? I want to participate in a fundraiser for Melanoma research and meet some melahomies." This list also includes events held in other countries as I become aware of them. Australia is the only other country I have an event for at the moment...and that one's first.

It's easy to find the state-by-state list at Aim at Melanoma. Aim currently has walks in Florida, Illinois, Michigan, Nebraska, North Carolina, Oregon, Texas, and Washington.

And the Melanoma Research foundation has "Miles for Melanoma," and "Ironman" events, but not all events are Aim or MRF events.

So, here's a compilation and the list will grow, so check back often. If you want to start an event, contact the organization or facility of your choice and they will be able to help you plan something to benefit them.


March for a Cure, (there's a list of other marches at the website), Gosford Waterfront (under Brian McGowan Bridge), March 24, 2013, Central Coast, "All proceeds raised from Melanoma March will be used by Melanoma Institute Australia to support vital research and education programs."


Annual Bruce Gorder UCSD 5K Walk for Melanoma (right now 2012 info is up), held in October at the Moores Cancer Center, La Jolla, California, "This walk raises funds to directly support melanoma research at the Moores Cancer Center."


Outpacing Melanoma 5k, Overland Park, Kansas, Sunday May 5, 2013, benefits "the Richard A. Klover Melanoma Fund which benefits The University of Kansas Cancer Center and our local community."


Miles for Melanoma 5k Run/Walk (right now 2012 info is up), held in St. Paul, Minnesota, benefits Melanoma Research Foundation.

Stay Out of the Sun Run (right now 2012 info is up), held in May in Rochester, Minnesota, benefits the Mayo Clinic Cancer Center.


Miles Against Melanoma Kansas City, Blue Springs, Missouri, May 18, 2013, benefits "Dr Ervin at the center for pharmaceutical research which one of the research he is doing is for melanoma right now."

New York

New York City Triathlon (right now 2012 info is up), held in July, benefits the Melanoma Research Foundation.

2nd Annual Outrun The Sun, Race Against Melanoma (hosted by the Rochester Melanoma Action Group), Rochester, New York, Friday, August 2, 2013, benefits melanoma research and education.

North Carolina

Amanda Wall-Corey Haddon Memorial Walk, Apex, North Carolina, October 12, 2013, benefits the Melanoma Research Foundation.


The Katy Ault Phillips Melanoma Foundation Lunch/Silent Auction, Mansfield, Ohio, early March 2013, benefits the foundation by providing funds for their mission which is to "provide financial assistance to melanoma patients and their families, while also educating the public about the dangers of melanoma and the keys to prevention." They also hope to do a golf outing in the summer of 2013.


Block Melanoma 5k Run/3k Walk (right now 2012 info is up), Milwaukee, Wisconsin, held in May, benefits Ann's Hope Foundation for Melanoma which funds melanoma research and educating the community about melanoma. A list of grants they have made is available on the Foundation's website under "About Us."

Thank you, everyone! We are all grateful!

Monday, November 26, 2012

Etiquette When Death Is In The House

Because this is a tough one to write, let me just get down to it. Death is not a spectator sport.

When someone is "sent home", there is nothing left to try, Hospice is called in (or not), and you receive word that a loved one or friend is dying, please

Understand this is not about you, your schedule, or what you want to do. At. All.

Those in the household are going through a great deal, as is, obviously, the person who is preparing to die. Dying is hard work. It's not pleasant. It's ugly. It's dirty. It's smelly. There will be lack of sleep, lack of eating properly, lack of hygiene, lack of smiles, lack of patience, lack of wanting company.

If you do not live in the household...you are company. I don't care if you're children of the person dying. When you go, go prepared to HELP! Cook! Clean! Run errands! Sit with your parent so the other can shower and nap! Pitch in! If they don't want the TV on, don't turn the TV on. The house rules will have changed. Deal with it or stay home. Hate to be so blunt, but chances are really good your parent who is looking after the one who is dying will think those things but not actually tell you. But they'll be so glad when you leave and they'll dread your arrival if they know you'll expect to be catered to...so I'm not as nice as your mama or daddy.

The appearance, and often, the personality of the dying person will change over time as the death process sets in. There may be bloating. If the cause is cancer, there will be a lot of weight loss. A lot. Down to skin and bones. Their coloring will change. If the cause is melanoma, there will be a massive amount of painful tumors throughout the body. If these tumors present themselves on the outside of the body, it will be beyond awful to look at. Don't count on those tumors being hidden when you visit. If it's uncomfortable to the patient, they won't be.

Which is why many people who are dying DO NOT want visitors. They really do not want to be seen as they are. They don't want to have to talk or smile. Now, some may. We're all different. Don't say, "Well, if it were me, I'd want..." It's NOT you!

So...call ahead. If you want to drop by some food, call first. If you want to stick your head in and say, "hi," call first and ask if that will be all right. DO NOT just show up at the door and expect to be ushered in.

You do not know what's going on inside.

Do not arrive at the door and see a sign asking you to NOT ring the bell and assume that means everyone but you and ring it anyway.

What can you do?

Pitch in. Run errands, go grocery shopping, check the mail, walk the dog, change the bird cage. Babysit at your house. Decorate the outside of the house if it's Christmas. Do things on the schedule of the household...theirs, not yours and be flexible if there's a change and gracious if they say "No thank you." But, whatever you do, CALL first!

And pray. Pray for peace and comfort.

As I say, everyone is different and all households are different. But, when we get right down to it, dying at home is pretty much the same for everyone in some ways. Body systems shut down. Appearances change. Often personalities change. There are sights and smells that can be embarrassing but cannot be helped, but those in the house don't want those outside the house to see them or smell them. It's very raw and emotional inside that house as people deal with a great deal.

This time is about them. It's not about you.

Your time will come and you'll understand.

Until then, make them grateful they know you!

Tuesday, November 20, 2012

"We're Coming After You, Melanoma" Starring The Human Spirit

I've been processing what I brought away from this past weekend's Aim At Melanoma Walk in Charlotte, NC. I know it impacted and changed my life in ways I may never fully comprehend. But I can't seem to stop smiling and I'm still uplifted by the experience...an experience I highly encourage everyone to have.

What I walk away with that weighs heavily on me...and it's a GREAT, FABULOUS weight...like a ton of coffee ice cream great...is two things combined. One: the total domination of the human spirit in the face of great odds (which, of course, is empowered by God's Holy Spirit), and, two: that human spirit when it strengthens itself with other determined human spirits and they unite to go after a common goal, which in this case is the total demise...the obliteration...of melanoma, is a force to be reckoned with.

(Sorry for the long sentence, but I have my Pauline moments).

Melanoma, your Day of Reckoning is fast approaching.

It began with the people who came. I can't tell about the power of the weekend without telling about Donna and her Jim. When Donna booked her flight she was blissfully stage 3. Melanoma spread though before she came to Charlotte and just two weeks ago, she had her gall bladder removed and her liver resected. Donna was THERE! She looked great, too, let me tell ya! Oh, yeah, she was there from ILLINOIS!!!! Two weeks after major surgery.

Melanoma, Donna and Jim are coming after you!

Then there's Rich. Stage 3c and NED nine years now. He flew in from COLORADO! There's Mark. Stage 4 and a believin' miracle, NED four years going on five now. He flew in from OREGON! There's Debbie, stage 4 and a bona fide, it's in a book miracle, NED four years now. She drove down from VIRGINIA! There's Allyson and her Spencer. Allyson's in the stage 3 range and NED a while also and looking great! They drove in from TENNESSEE! Alicia, her husband Aaron, and their two babies drove in from KENTUCKY! Alicia's also in the stage 3 range and doing beautifully NED. Chelsea and her family drove in from VIRGINIA! Chelsea's stage 3, doing a trial and beautifully NED. Pam and her team, drove up from FLORIDA to honor her Joe who died, too young, earlier this year. Micki and her daughters drove up from SOUTH CAROLINA to honor her Bob who died, too young, not long ago. Sue and her team drove from ARKANSAS to honor her Bobbi who died, too young, earlier this year. Jean, founder of Aim, came from TEXAS to be with us. She founded Aim after her husband died, too young, from melanoma. Linda came from OHIO to honor her daughter, Katy, who died too young from melanoma. I didn't catch what state Jess and her team came from, but they came from out-of-state to honor Jess' sister, Melissa who, also, died too young from melanoma. And there were others.

Melanoma, take note. ALL of these people are coming after you!

We came from everywhere. Survivors and people who love us. People who have watched, in horror, as melanoma slowly took the life of a loved one. People of all, and I do mean ALL, ages. Some in strollers. There was a wheelchair or two. Some walked, some ran, some watched. ALL supported a common goal and that was to announce

Melanoma, we're coming after you and you will not escape.

Jess laid it on the line beautifully when she spoke on behalf of Team Melissa. I wish I had a copy of her speech, but she, in effect, said, "Melanoma took the wrong one when it messed with MY sister. I'm going to do what the Komen Foundation did and one day people will see black ribbons everywhere and know what they stand for."

Melanoma, Jess is coming after you! And I tell you something else. I've contacted a mutual friend and want to get her plugged into the melanoma community so we can work together and make her dream come true. That's the dream we all share.

Do you know what it's like to feel hundreds of human spirits, touched by God's Spirit, all in one place? That's one heck of an awesomely powerful feeling and I'm wrapped up in it. Still.

And there were those who wanted like everything to be there and couldn't be. They were "with" us in spirit, plastered on signs, on t-shirts, and on BILLBOARDS! Their presences were felt and celebrated. Their human spirits transcended time and place and were among us. We all felt them.

Melanoma, those you're trying to keep down are a powerful force to be reckoned with and they are coming after you!

And we and our one event are the tip of the iceberg. There are events all over the map, of various kinds, and there will be more. People are asking "How do I start something?" People who know the pain and heartache and who don't want others to know it. Mamas and daddies and spouses and children who don't want other people to carry the pain they'll never be able to put down.

Melanoma, these people were the wrong people to mess with. They're coming after you.

And that's a huge thing I brought away from this weekend and I will carry and use to motivate me.

We came from all over. We came to meet people who know and understand what others do not. We came to hug and cry and smile and laugh and support and be a united front that will not only stay united, but grow.

We're not going anywhere either. We've got a declared job to do and we've got the passion, determination, and fire to do it.

Melanoma, you've ticked off the wrong people...hmmm...maybe you ticked off the right people. The right people for this task before us.

Some of us have weak flesh, thanks to you. But we all have strong spirits. Most importantly of all, the Strongest Spirit of all leads us in battle.

Melanoma, pack your bags. We're coming after you and we shall prevail.

God always finishes what He begins.

And I am oh, so, grateful!

Saturday, November 17, 2012

My Melahomies Are The Best!

My heart is full, my feet are sore, and my knees aren't speaking to me (which, when I stop and think about that, is a pretty good thing).

This Aim At Melanoma Walk has been AWESOME! The sheer awesomeness started coming together a few days ago. I was messaged by Judy King, who is with Jen Christy and both dear ladies are receiving intense treatments for their stage 4 melanoma. That had each wanted to travel to Charlotte, NC and join us but melanoma told each "no." Jen, particularly, wanted to come and was devastated when she couldn't. Soooooo, Judy, knowing how heart-broken she was gave me a beautiful suggestion of pulling Jen's picture off Facebook and making signs that we could tote around and make her "part" of the Walk. Well, I'm not arty or crafty so I sent out my own private message to several friends and one, Timna of Respect the Rays, jumped on the project. Pounced on it is more like it. Not only did she make fun signs with Jen's picture, she made a few with Jillian Hayes, Eric Martin, Steve Martin, Susan and Jillian Hayes, Bob Lockey, Leslie May, and Judy King. (Judy's sign isn't in the picture below, but it was made and I carried her around with proudly).

I was also sent to Charlotte with a box of "Facts and Faces of Melanoma 2013" calendars by Susan Hayes to give away. This was going to be fun!

Last night, several of us got together at the hotel. Mark Williams, Rich McDonald, Debbie and Randy Hennessy, Tara Gill, Allyson and Spencer Townsend, Donna and Jim Moncivaiz, and Mitch and I. I also met and hugged Pam Billek. Al Estep came down. Chelsea Price was coming in around 10 pm. I tried, I really did to wait for her. I had a surprise for her and I really wanted to give it to her before this morning. But it got to be 10:30 and past my bedtime. So, I say my "good nights" and leave. Who should be at the front desk checking in as we walk by? Oh yeah. God wasn't letting me go to bed before she got her...TIARA!

Then, Anne Bowman messaged me last night and asked if I'd open with prayer this morning. Anne, by the way, did an outstanding job pulling this together! I think she was pretty pleased.

This was the prayer: "O Lord, you have brought us together from many places. We come as Your children, and we come bound together by a common disease, melanoma. Some of us battle, some love us, and some have buried a loved one because of melanoma. We are also bound by a common  goal and that is to kick melanoma to the curb, to find a cure, and until a cure is found to find more and better options. Your hand, Lord, is on this Walk and we thank You. Now, please, touch our human efforts and bring forth mighty results. We're trusting You with this, Lord, and we thank You that You are faithful and will complete what You began! Melanoma is coming down! Amen and Amen!"

So, this morning, we were walking and I was carrying the sign with Susan, Jillian, and Charlotte's picture on it and the one with Judy King, and towards the end of the walk, Mark Williams and I are walking and he's carrying Bob Lockey's sign. Bob died not too long ago, and many of us really looked forward to meeting him. We knew his family was supposed to be at the Walk but we hadn't met them. Until the end of the walk and we just all kinda met up as we walked and talked and I took Bob's sign right out of Mark's hand, without asking, and handed it to his daughter Paige. God was working. They needed to walk with Bob and they needed that sign.

Jean Schlipmann, founder of Aim, came up from Texas and spoke. Jean gives GREAT hugs! When that woman squeezes, you know you've been squoze! Rich McDonald and Mark Williams wore their black tutus and were stunning! In a manly sort of way. Chelsea wore her tiara. Al Estep wore his signature hat and took photos with his head cocked so people would recognize him. I hugged Alicia Bowling who is One Tough Mudder! And we all met some of the best people on the face of the planet!

God smiled. The weather was crisp, but clear and beautiful! The park is beautiful! Friendships made online are now cemented with real hugs.

Melanoma changes our lives. Sometimes great good comes from it.

Today was one of those days. This event has been a life-changer I would not have had if melanoma wasn't part of my life.

To everyone who travels melanoma road with me, all my melahomies...those I've hugged and those I'll hug one day...I love you guys!

Thank You, Lord! You've got one grateful gal here!

Friday, November 16, 2012

Oh My! Country Goes To City. Charlotte, That Is!

The first thing Mitch noticed is we're right next door to Macy's! Who knew? And who knew Mr. Bass Pro Shop would find Macy's exciting? But "hallelujah!" all cards are in my name and I'll be on the golf course tomorrow after the walk.

Oh, that would be the Aim At Melanoma Walk that I've been babbling about for quite a while now. The time has come. And we set off around Freedom Park in the morning.

First, I've got to get used to being in Charlotte which is the largest city in NC, even bigger than Raleigh, which I hate. Too fast-paced, too big, too much traffic, too too and not a tutu in sight. And that's an inside melanoma community joke. But I'm excited anyway.

I do all the driving in my red HHR so I drove from Conway (NC) to Charlotte, which took a little over 5 hours. I've never been here and didn't know what to expect. The drive, though long, was easy. Getting to the Double Tree Hilton was easy. What's NOT easy though is coughing up ten bucks every 24 hours to go online here! Hello! Hilton! Your guests should ALL have free access and not just Hilton Honors people. It was an advertised perk! I'll be here two days, that's $20 to go online! I'm not happy about that one little bit, but the room is lovely. The hotel is quite nice.

AND, I checked in right behind Allyson Townsend and her Spencer! I've already met a mole-mate! Good thing I hugged her and shook his hand before finding out about the Internet access!

I've got a box of Jilly's Jems Facts and Faces of Melanoma Calendars 2013 to hand out and three shirts to find wearers for for the Hayes clan who couldn't make it (and yes, Susan, I'll make sure to mail them back to you all nice and sweaty).

OK, that's it for now. I'm heading down to the lobby and see who I can ambush. Then some of us will be having supper around 7.

You'll hear from me again later tomorrow after the Walk and after golf. Don't choke, I'll be driving a golf cart only. I don't have a smartphone so I won't be sending constant updates and pictures in real time. Sorry. I'll have to come back and log on to Fb to see what was posted by other people so I can see what I did!

Glad to be here! Looking forward to getting so sore from hugging tonight that walking, tomorrow, will be a pain. But walk I will. And I will miss those who so wanted to be here and can't be. We'll walk for you and carry you in our hearts! You ARE with us! We'll carry you with us every step of the way.

Grateful for the privilege!


Saturday, November 10, 2012

Don't Stop Believin'

Oh yes, I did. I tackled Journey's classic. While I apologize, in advance for any head-shakes this may cause, my motives are good.

I have a stage 4 friend, who's flying in from Oregon next week for our Aim At Melanoma Walk in Charlotte and his mantra is, "Don't Stop Believin'" and when he says it, we believe it. Well, Mark, has asked for Journey and Journey he's going to get. This will teach him!

Here's a link to the official video. So, Mark, this is for you:

Just a tanned brown girl, livin' in a pale-filled world
She took the cancer train goin' out of here
Just a tanning boy, oiled and cool by swimmin’ pool
He took the cancer train goin' out of here

A doctor in a cancer ward
The smell of clean and sick bombard
For a while they can share their fight
It goes on and on and on and on

Patients daring, up and down the cancer ward
Their spirits hopeful in the fight
For cure people, living just to find a cure
Out there, somewhere in the fight.

Treating hard to get my fill,
Everybody knows the drill
Tryin' anything to roll the dice,
Just one more time

Some will live, some will not
All will give it all they’ve got
Oh, the journey never ends
It goes on and on and on and on


Don't stop believin'
Mel’noma’s goin’ down
For cure people

Don't stop believin'
Hold on
For cure people

Don't stop believin'
Mel’noma’s goin’ down
For cure people

Carol here, one day, people, one day. Melanoma's going down.

And I will be counted among the grateful!

So will Journey's Steve Perry who is, also, a melanoma survivor.


Thursday, November 8, 2012

Promises, Promises

When College Kid was younger, he's 22 now, I quickly learned that, with him, a "yes" was synonymous with "promise to." A "no" was synonymous with "promise not to." And "maybe" and "we'll see" were synonymous with "I promise on my life." His older sister had a much better command of the English language and understood "maybe" and "we'll see" were just that: gray areas where we would if we could and wouldn't if we couldn't.

College Kid is also the one that I still have to watch what I say and listen carefully when he "quotes" me because he rarely quotes me correctly. He "quotes" what he wants to hear. But I do love the Kid. Both of them; the one who fudges and the one who doesn't.

While God loves both the fudger and the non-fudger when it comes to His children, it's really not a good idea to make up God's Word as we go along. And it's really not a good idea to ascribe to God promises He didn't make. There's one promise, in particular, that I'm seeing over-and-over misquoted and because it's misquoted, there are people whose faith is hurting.

The promise that's circulating: God never gives us more than we can handle.

Please find that in the Bible. Anywhere. Any translation. It is not in there. God never, ever promises not to give us more than we can handle. Oh, He promises to be there in it with us and to walk with us through it, but He never promises not to give to us more than we can handle.

Here's the promise, as it really is, and it's 1 Corinthians 10: 12-13 " If you think you are standing strong, be careful not to fall. The temptations in your life are no different from what others experience. And God is faithful. He will not allow the temptation to be more than you can stand. When you are tempted, he will show you a way out so that you can endure."

That's the promise. God will not allow us to be tempted more than we can handle. And He will provide a way of escape, but we have to take the escape and get out of the situation. 

See the difference between the real promise and the promise as some people want to claim it is? There are lives that see tsunami on top of tornado after drought and famine. One thing after another; some, maybe many, cannot handle it. There are people who snap, they break. Prayerfully they find God during it or shortly afterwards. Even people with strong faith can break for a while before God puts them back together. God definitely uses stormy lives and seasons. The promise regarding "storms" is that we'll all have them. Experience bears this out. History testifies to it. So does reason. 

While I'm sure there are other promises we can get wrong, and others we may interpret not as God intended, the promise mentioned above isn't one we misinterpret...it's one we can get flat out wrong.

When troubles pour on top of each other there are often, from what I've seen, two reactions based on this "promise". One is along the lines of "God must think I'm strong to give me all this." And, two, "They say 'God never gives us more than we can handle' and I've had enough. God, will You stop it now, please?"

Though the first reaction tends to give a semblance of hope, the other reaction can bring on despair. Neither reaction is based on a real promise.

The real promise, as it is, is awesome though!  And I'm grateful for it!

And I'll be even more grateful when we get this right and check Scripture out for ourselves instead of accepting what other people say. Seriously. If you don't own a Bible, use the link above to several translations. Get to know the Word on your own.

And be grateful!

Monday, November 5, 2012

Hey, Hey, We're The Walkers (Sorry Monkees)

It won't be long now and Black C Nation will arrive in Charlotte, NC for an Aim At Melanoma Walk November 17th. So, here's my little take on The Monkee's Theme Song (video here):

Here we come
Walking ‘round the Park
We got a guy in a tutu
That would be Mark.

Hey, hey we're the Walkers,
and people say we’re gaining ground.
But we're raising money,
to put melanoma down.

We just wanna advocate,
Come join us the seventeenth.
We're the Black C nation,
And we got people strength.

Hey, hey we're the Walkers,
You never know when we'll be ‘round.
So you'd better find money,
We may come walking in your town.


Thursday, November 1, 2012

Melanoma Goes To The Third Grade

OK. So it's not exactly Mr. Deeds hitting DC! It is what it is and to me it's pretty cool.

Before this school year started, my church decided to adopt a local elementary school...local to them, not to me, btw. This particular school is a few miles beyond church, but this is my church and we're in this together. We bought some of the children uniforms, shoes, socks, and underwear so they could start school. No uniform, no admittance. We furnished school supplies. Some of us took their volunteer training, myself included. We, as a church body, have already voted not to do poinsettias this Christmas, and instead, see what we can do for the children.

I've been going twice a week, for an hour each day, to assist a wonderful third grade teacher and her class with...drum roll, please...reading! It should come as no surprise that I've always loved reading and writing. My first morning she asked me to help a child who was having trouble reading. Before I left that day she asked if I could handle more and told me of a few others who were having trouble as well. She had been listening in to what I was saying to my new little friend, liked what she heard...which was a great deal of talk about phonics...and wanted me to help others. So, ever since then, I have my own table in the classroom, and four young minds that are entrusted to me to help them catch up with their class and increase their reading skills.

I'm finding that my journey into the world of melanoma is helping me go to school, and more specifically, sit down with four third-graders who struggle, in different ways, with reading.

They need confidence in themselves and in their abilities, especially when they are outnumbered by their peers around them who are moving ahead. The five of us kinda stand out in the room. When I walk in, they walk over to our special table. We all know why I'm there and why they are moving. And it's OK. I remember what it's like, as an adult, to dress differently from the adults around me to accommodate drainage. Today my compression sleeve and glove draw stares and comments. I'm an adult though and this has been going on for four years. These are children and they are just now starting to stand out from their peers. Up until this year they were ALL learning to read. Now that they're in third grade, they are all supposed to be reading to learn and my four aren't quite there yet.  So we aren't just working on phonics. We're learning "I can do this!"

They need to learn persistence and not to give in or give up. This is the area my four will "fall seven times" and they have got to learn "and stand eight." That's just the way it is. It's heartbreaking to think that if they truly get left behind now, they will be left behind the rest of their lives. Possibly. Probably? They have hopes and dreams for what they want to be when they grow up. One child shared today that he wants to be a policeman when he grows up. Policemen have to be able to read. We learn very quickly with melanoma that we're in it to win it. Failure is not an option. These children have to take that attitude when it comes to learning to read and read well. And comprehend. I didn't mention that. Being able to sound out a word, as we all know, isn't enough. We have to know what we're reading. So, we're working on synonyms and homonyms also. That's a lot to squeeze in into two hours a week. I'm merely a supplement to what their teacher does and to what, I hope, they are getting at home. But these children are already counting on me and this is a lesson I can teach them and if they learn it...it will stay with them throughout their lives.

They need to set goals, both short term and long term, and be willing to do what it takes to reach them.  And being flexible because sometimes goals have to change, either temporarily or permanently. I want them to have those dreams for their future and I want them to attain them. It won't be easy but nothing in life, worth doing, is easy.That doesn't mean attaining goals can't be fun and enjoyable, but attaining goals takes time, sweat, perseverance, heart, etc. I don't recall having to set such a lofty goal as learning to read when I was in the third grade. My mama's lofty goal was to make me a piano player. I laugh, she cries, life has moved on. These children have to learn early about hard work and its rewards. Their peers are moving on. We're moving too, just not quite as fast. Melanoma will teach the nice and easy does it approach to moving ahead, one step at a time, taking a deep breath, reevaluating the game plan, looking at the short term and the long term and setting appropriate goals for each term. Melanoma is a game-changer that has no rules.

The first day that I had four children I told them that they were already smart, but we're working together on their reading to make them smarter. That really resonated with one of the girls and when she grasps something new that's what she'll say, "We're getting smarter!" Not "I'm getting smarter!" She announces. "We're getting smarter!"

They need to learn to be mutually supportive, teamwork, we're in this together. And they are. That's something they're already getting in class from their teacher. This is something I get to come alongside her and echo. Actually I get to echo everything on this list as she is already doing it. Melanoma teaches us very quickly that we have to have assistance, support, help, people, each other, folks who love us, and folks who understand where we are. This journey is not about "me," it's about "we." It may take a while to get the reading skills of each of these four children up to par, but they are learning team work and to be supportive of each other early and well. That, too, is a skill that will go with them through life.

Melanoma has given me insights I need that I can apply to what I bring to our little table. Who knew?

And, yes,

I am grateful!

Tuesday, October 30, 2012

Dear Folks Who Do Not Have Melanoma

That includes family and friends, co-workers, and people who meet me on the street.

I know you don't understand. How could you, though, because this word, "melanoma" hasn't been attached to you personally. I didn't understand before it was attached to me, either.

Our families, spouses, children, parents, siblings have their own fears for us and for themselves. But, even their insides are different from ours. And, to be fair, our insides don't look like theirs either. I cannot begin to tell you what living with our diagnosis is like for them. Let me tell you what it's like for me.

On the outside, the part you see, I look fine. I smile. I laugh. I work. I go about my life. No pity party here. I'm blessed and I know it and I'm grateful for each day.

Usually my insides and my mind, look pretty good, too. And even when they don't, I will usually not let you see it. Just don't you think I'm fine or tell me I'm fine. If I want to say it, those words are mine to say. They aren't yours to say for me or about me.

See, my melanoma was, hopefully and theoretically, cut out. My outer, superficial scars are healing. But we don't call melanoma "the beast" for nothing. It has more than earned that name and I know what I'm living with. And then again, I don't.

I know this disease. It has no MO. It just doesn't. I can be stage 1 today and stage 4 in a few months. Me, personally, as I write, I'm stage 3b and NED (no evidence of disease) for four years now. If this comes back, it will be stage 4. Brain or lungs according to my melanoma specialist surgical oncologist; there's a slight possibility it could come back as another primary on my body surface. I won't know until I know. Even then, I may not "know" until scans reveal something growing I had no idea was there.

I can already be harboring growing tumors somewhere and have NO IDEA! Right now I have no symptoms, but that doesn't mean I have no tumors. Lovely, huh? Those are thoughts we all have once melanoma is attached to us. We aren't always as "fine" as we look.

At least, I'm not. So please don't think I'm fine. My body either is or it isn't and I don't truly know. My mind can get the best of me at times and play games with me. And every time I get a new lump, bump, change in ANYTHING, or new symptom of any kind, my mind automatically jumps to "has melanoma returned?"

I know what I live with and because I live with it, I've educated myself about it. Trust me, I know right much. So when I try to tell you to stay away from tanning beds, to practice safe sun, to stay vigilant about your skin and moles and get all changes checked, and when I try to tell you that melanoma isn't just skin cancer...it is much more and doesn't need superficial skin to begin in, please listen. I don't want my story to become your story. And if you're related to me, really listen up because you now have melanoma in your family tree. I'm third generation melanoma.

If you cannot listen, at least, please don't flaunt your melanoma-seducing ways in my face. You don't know how much it hurts to see your unnaturally tanned self and read of your tanning and know you're courting disaster. I've been there, courted disaster and didn't even realize it, disaster won, and that's not a good place to be. Today we know what behaviors court melanoma. WE KNOW!!!! Many melanoma diagnoses don't have to happen if people would listen and heed what we now know! Not ALL melanoma is preventable, but much is. Many cases are treatable; none are curable.

Not mine and not yours if you get it. Not now, at least. So, it hasn't been "cut out and now I'm good to go". This, in all probability, if it has its way, will kill me and it will be a brutal death. It could kick in before this year is out or it can lie dormant and kick in twenty years from now. I won't know what it will do until it does it. I know what I'm up against and it's not pretty but it is what it is. I'm not as fine as you may think I am.

But I am grateful to be here and be part of a melanoma community that's doing everything it can to keep our numbers from growing. Many will join us because damage has already been done. Others will join for unknown reasons because there's still much to learn about this disease. But there are many who can avoid joining us, maybe you, if folks without melanoma will just pay attention to us.

Listen now and maybe you won't ever have people telling you that you're "fine" and you "look good" and "What's the big deal? They cut it out so get on with life." Maybe you won't ever have to learn about this disease the hard, up close and personal way. Maybe you won't ever have to pick who you talk to about this to avoid people saying things that are hurtful and ignorant.


So, folks who don't have melanoma, let me leave you with these parting thoughts: I've learned much I never thought I'd learn...stuff I didn't know existed. And while I'm not "fine" with what I've learned, and while I'm not always as "fine" as I look, I am one of the most grateful people you'll ever meet. I'm in a community of the most beautiful people on the face of this earth because of melanoma. And God has used this disease in ways I never could have imagined that day that I heard, over voice mail, that I had melanoma. I have seen God work wonders, do miracles, pour blessings and open my eyes and heart in ways, in my life and in the lives of others, that I would never have seen without the beast ripping into my life. I stand amazed and in awe every day. Of God's hands at work, at the people He has brought into my life, at what I see being done in the field of melanoma research, at how He's bringing the melanoma community together from around the world. I stand amazed and in awe that I am part of this. Physically I have no idea if I really am "fine." I have my days when emotionally I am far from fine. Spiritually, I soar.

And I am grateful.