The NEED To DEMAND Scans In Melaland

I'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.

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 (here's Aim at Melanoma's link 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).

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!

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.

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.

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.

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.

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.

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.

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.

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.

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.

If more and more make those demands, more and more will see results.

But we can only do so much. We can demand.

Will you hear?

Will you help?

Or will you harm and possibly kill?

Please. Stand with us.

We're counting on you.

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.

You'll get it then because you will have gotten it.

Make a difference NOW. Before that happens.

Thank you. I really Do want to rise up and call you "blessed."

charis

Well, We Had A Little Talk With The AAD

Last night, as I write this, several of us from around the melanoma community had a phone conference with representatives of the American Academy of Dermatology. They initiated it and invited us...Oops! Let me give a little history to add the context...

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."

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.

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.

Well. It seemed like they weren't listening. BUT THEY WERE! Recently several of us, including Tim Turnham from the Melanoma Research Foundation and Samantha Guild from Aim at Melanoma, 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.

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.

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!

Read Al Estep's Black Is The New Pink post.

Read Susan Hayes' Jillian's Journey with Melanoma--A Mother's Story post.

Read Timna Understein's Respect the Rays note on Facebook.

Read Rich McDonald's Hotel Melanoma post.

Read Donna Helm Regen's Melanoma Mama post.

We DID it fellow travelers on melanoma road! We stood united last year and we were heard!

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.

No. What I want to do is highlight a triumph and encourage us all to continue working together and shining our lights, together, 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.

Don't lose heart. Even when it seems like no one is listening...they ARE!

WE make a difference!

YOU make a difference!

God is in our midst and with God ALL things are possible.

And "ALL" means ALL!

I'm proud of each and every one of you.

Thank you for sharing your journey with the likes of me.

God bless!

charis

Mt. Pisgah, Here I Come!

Well...not any time soon, mind you. I hope. But my plans are made.

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 could 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...

When I die, be cremated and my ashes be scattered off the top of...Mt. Pisgah! 

Seriously. I've told everyone who can make that happen that that's what I want.

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.

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.

My two grown kids will have the opportunity to blow me off. Or blow me away.

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.

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)

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.

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.

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)

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.

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.

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.

And maybe hit a golf ball. Or two.

That will top their Granddaddy.

And life goes on...

charis

1 Corinthians 13 for Pastors and Worship Leaders

1 Corinthians 13 for Pastors and Worship Leaders

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.  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.  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.

            Love deals kindly and is patient with choirs and congregations who don’t see things my way.  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” know best worship practices and “you” do not or act ugly.  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.  Love bears all things, believes all things, hopes all things, endures all things.

            Love never ends.  Books and best practices will become dated and change; my talents will diminish with age and one day cease.  The knowledge of worship I have in my brain will, also, one day die.  I do not know everything and I will never know everything; but God, alone, does.  My knowledge will come to an end but God’s will last forever.  God is the only one who can change hearts to truly worship, I cannot.  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.  God alone knows us fully.  That I now understand.  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.  Your love.

(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).

charis

Pediatric 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 stage 4 warrior and be born in her baby...and kill that baby before she was two years old. Her mother died before she did...again, of melanoma.

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.

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.

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.

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.

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.

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.

MDA has a great page on their site dedicated to pediatric melanoma (look at the 6 tabs underneath the "Childhood Melanoma" heading).

St. Jude has info.

Here's an article that discusses pediatric melanoma. Pay special attention to page two where it discusses what it looks like in children.

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.

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.

charis

Miss Mary, a 98 year old, 46 year melanoma SURVIVOR!

(Note: this is also a note on Melanoma Prayer Center on Facebook)

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."

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.

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."

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 TOGETHER! There's no human way I can possibly write how she said that word, "together."

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.

And here she is. 46 years later. At 98.

A survivor!

And a true story of HOPE!

A Letter to Dermatologists and Primary Care Doctors

Dear Dermatologists and Primary Care Doctors,

You are, as a rule, our first line of defense against melanoma. I want to thank you for being there for us, and, for the most part, doing a great job. However, I need your help in doing an even better job…and I say the following knowing it will not apply to all of you. But we still need your help in being our advocate with your colleagues.

I am hearing from many of my stage 0 (in situ), 1, and sometimes even stage 2 melahomies that they feel you aren’t taking their melanoma and skin cancer concerns seriously. And yes, I do separate melanoma our from the skin cancer category. Let’s face it, even seasoned melanoma specialists do not always recognize melanoma when it presents itself. Those “ABCDE” rules do not apply to each and every melanoma. And they especially usually do not apply to people with darker skin tones than Caucasians.

Please trust our gut and if our gut has a concern, simply remove it and send it to pathology. Every time we ask. We’ll either be right or we’ll be wrong, but we’ll be SURE and more at peace. PLUS, we’ll rise up and call you blessed. Right now, if you aren’t taking your patients’ concerns seriously, “blessed” is not what they’re calling you!

It won’t be any skin off your nose, so to speak, to remove a place of concern. It won’t be your scar or your fight. And if you leave it on there and it spreads too much before it finally IS removed, it won’t be your death either if it gets to that point.

We need compassion and we need you to take our concerns seriously. If we are more than you feel comfortable handling, please swallow your pride and refer us to a melanoma specialist. We realize not all dermatologists make melanoma and skin cancer the focus of their practice and we know primary care physicians aren’t melanoma specialists. So, please refer us if that is in our best interests. Know the melanoma specialists within a few hours drive from you. Let how far we’re willing to travel be our decision.

All we want is a fighting chance against this deadly disease. Please give it to us. And remember, if you’ve never had your own melanoma diagnosis, and we pray you never do, you don’t understand what this diagnosis does to our emotions and psyche. This is very true of our friends who have lower staged melanoma. Doctors, I’m stage 3b and my dermatologist take MY concerns very seriously. I want ALL my melahomies to be able to say the same thing, no matter what their stage is. You can make that happen.

Thank you doctors and God bless!

Rev. Carol Taylor

Hotel Melanoma’s Chaplain Boss Queen and admin of Melanoma Prayer Center on Facebook