Tuesday, February 28, 2012

Delving Under Attirude-Or-Don't Mess With Me!

Every once in a while, just when I think I've "delved," God says, "Oh no you haven't. You scratched the surface. Maybe. But you haven't 'delved.'" I thought I delved pretty well when I took a look at attirude. I thought that post delved the dark side of melanoma. I thought that post delved my very real look at a meltdown I had. Attirude is the surface. It's either what folks see or what they catch. It's not the heart of the matter.

You don't get to see the heart. But God does. And, melanoma knows it all too well and plays on it. Often quite effectively. Sometimes though, sometimes, God breaks through and uses it for His purposes. Just like God can redeem our melanoma and use it in ways we never dreamed possible when we were diagnosed, so too, God can take our attirudes and redeem them as well to serve a higher purpose. We are who we are. We have the gifts and graces that we have. We have the skills and educations that also mold us into who we are.

Melanoma seeks to take all that away and make us feel useless and ineffective. It tries to make us and mold us after its will and, sooner or later, especially for people of faith, God breaks through our barriers and defenses and reminds us who we are and we are His. Just as He made us. And He reminds us that He alone is greater than our melanoma and He alone can take all our broken pieces and use us quite effectively just as we are. Where we are. In Melaland.

See, underneath our attirudes is the knowledge of what we live with on a second-by-second basis because it's in us. Or we worry that it is in us because it has been and we know its nature. Even when we put it out of our minds for a while, we know it's there and that knowledge, in an odd kind of way, shapes us into people that can handle what a lot of people can't handle. We can look at the petty and the dangerous. We can look guns in the face and laugh. (I haven't but I know a spunky warrior who did). We can take a stand, even if we stand alone, because we know there's nothing a mere mortal can do to us that's any worse than what melanoma can do to us. And we can lead the charge, unafraid, because we know there's nothing we can't handle. What can man do to me that's worse than melanoma? Absolutely nothing. That creates a "bring it on" and "give me your best shot" attirude. Sooner or later, depending often on what we've endured to survive and thrive, we get there. And when we do, watch out!

God takes our little loaf of bread, breaks it, blesses it, and uses it to feed those who need feeding. Our attirudes can create havoc. Or, our attirudes can bring hope and healing. Our attirudes can tear down. Or, our attirudes can build up. Our attirudes can show the world who we aren't, or they can show the world who we are. And God being God, can use us and our attirudes in all sorts of settings and for all kinds of purposes, not just melanoma related ones.

Aretha Franklin's song Respect has been on my mind since Sunday. For the first time that I can recall, God took my attirude and boldly used it for His purposes outside the world of melanoma. It felt soooo good! It felt good to be who I am now and speak up and speak out and take full charge of a situation that only a God-shaped attirude could take. It felt good to be reminded that I am who I am and that's first, a child of God who is multifaceted as a human being; second, a pastor of a wonderful church; and third, someone who is stage 3b melanoma. Sometimes melanoma tries to mess with that order. Sunday God set melanoma straight.

When anyone tries to mess with me or mess with my church, they don't know who they're messing with. They don't know what I live with. God does however and God knows how to use it.

And I am forever grateful!

Friday, February 24, 2012

Storms. Rainbows. Melanoma.

Generally rainbows follow storms. Not all storms end with a rainbow and not all rainbows follow "storms." They can follow just a good rain. Where we find one we will not necessarily find the other. Life's like that, too. Rats. It would be so cool and totally wonderful to have all my life-storms followed by big, full, colorful rainbows with really bad life-hurricanes ending with full double-rainbows. Only in a perfect world, I suppose.

Except a perfect world would be storm-free. Would that, then, make it rainbow-free as well?

Since we're not in a perfect world, I won't spend time contemplating that one. We're in a world where diseases masquerade as storms. Or is it vice versa? We're in a world where our storms don't always have the rainbow ending we want ... on earth that is, because, we're also in a world where the very worst of storms is followed by a rainbow of such glorious proportions that there's an actual street of gold at the end of it and not just a pot!

Oh, but when we have the "perfect" storm followed by the perfect rainbow ... well, it just has to be shared. Especially when there are tons of little unexpected hints of the rainbow yet to come sprinkled in.

Yesterday, as I write, I got the bestest rainbow I've gotten to date since I've been on melanoma-road. Yesterday I had an appointment with the top melanoma specialist dermatologist at Duke and I had it with her on purpose. It was time to see her before I see my surgical oncologist next month for my check-up. But by the time I actually saw her, I was in full-blown-storm mode.

I had beau-coups of new places that were giving me cause for concern. Panic to be more precise.  Some were rough. They all interfered with sleep. They were everywhere! At the base of my neck, shoulders, back, up and down back, chest. I fully expected her to take a pound of flesh cutting them all out and leaving me with, oh say, 90 stitches or sew. (Smile, it won't kill ya). And I had attirude coming out ... I had attirude!

I was also smart enough, or perhaps desperate enough, the night before my appointment to post on my Facebook page and on Melanoma Prayer Center that I needed prayer and why. Here's what I pitifully posted:

"I don't come on here and ask for prayer for me often, and I know sooooooo many with melanoma are far worse off than me and this may sound petty, but for the first time since my diagnosis I'm dreading an appointment. I see the top melanoma specialist dermatologist at Duke tomorrow and I'm reasonably certain there are several places she'll want to cut off and have pathed. And I have a very real gut feeling that the melanoma is back. I'm not a happy camper right now because I don't know what that will ultimately mean. So, I can use prayer for my nerves and prayer for my attirude (no typo). And prayer that I'm still NED. I really am quite fond of NED and would prefer to stay as far away from Mel as possible. Thank you."

Fifty-six people left comments on my Rev's page that they were praying for me. Some left prayers. A few left pictures. I got a song. On Melanoma Prayer Center I received 35 more comments and prayers. Why didn't I see a bright rainbow coming? I don't know, but I didn't. What I did see were tears in my eyes. I cried off and on that night but they weren't tears of worry or fear. I felt those prayers. And they moved me to tears. I can never say "thank you" enough to the people who prayed for me. Did those prayers move God to change those places of concern from "somethings" into "nothings"? Again, I don't know. Maybe they were "nothings" to begin with but He wanted to teach me lessons. Who knows?

While I did feel those prayers, and feel them strongly, they didn't reduce my angst one little bit. But, they did strengthen my resolve to let the doctor do what she needed to do to rid me of all those places of consternation. I didn't like the thought of all those numbing shots, cut-outs, and stitches. I didn't like the thought of learning how to sleep ala Granpa on The Munsters. Remember how he hung upside-down in a wardrobe (I think it was) to sleep? But I was going to do what I had to do. That's what I tell other people. I was going to listen to me for once.

So yesterday gets here and I get there and do what people expecting a full-body exam do and I tell her my concerns and point them out. I tell her about how nervous I am and have been. And she does her job and a rainbow fills the room.

She tells me all my moles are perfectly healthy and that all the places I thought were "something" were "nothing" but inflammations. She couldn't explain how they got there, maybe my clothes, but they were, each and every one NOTHING!

And I teared up and I swear I thought I saw her get a little misty, too. NOTE: that's a good sign you've got the right doctor. When I wiped my eyes, she said, "I understand." Another good sign.

It actually took me a while to get myself together and leave. I was so stunned. I kept wiping my eyes. When the doctor came back in with my sign-out papers, I still wasn't ready to walk out into the hall (it would have been very embarrassing!) and I apologized, still wiping my eyes, and she said again, very gently, "I understand." And I think, for a doctor, she did.

Here's what I posted when I got home:

"I did it! I gave up melanoma for Lent and it feels GOOD! A real hallelujah moment! Thank you everyone for your prayers and thoughts. I honestly expected to leave behind a pound of flesh today and walk out with around 90 stitches...seriously, I had that many places...new...rough...that gave me great concern. They ARE ALL inflammations! Hydrocortisone twice a day for two weeks is sooooooooo manageable! So, the only stitches I'm sporting are on my clothes!"

The choir gave praises to God of thanks. I got another song (which was written while I was gone and also about others and not just me). I'm still pinching myself. The first application of hydrocortisone started helping almost immediately. I still see rainbows everywhere I look. Life is good. Today. I'm counting on it being good tomorrow, too.

Melanoma being what it is and life being what it is, I'm positive there will be other storms. Some will have rainbows after them and some won't. There will be a final storm one day and I'll walk that street of gold but in the meantime there are songs to sing and prayers to pray and storms to face and rainbows to witness.

And I am grateful that I do none of that alone.

Wednesday, February 22, 2012

Melanoma With Attirude

"attirude of gratitude melanoma" is a recent search term that led Google to send some unsuspecting person to this blog. "Attirude?" Me? Really?

Actually, I love this word and I hope Websters will take all appropriate measures to officially add it to the dictionary so the world, at large, will have access to it. And, yes, I realize someone really typed a typo, and while I normally have zero-tolerance for "published" typos, I'm going to look at this one theologically, because I can, and determine God has a bigger purpose to serve through this person out there somewhere. And as a person with melanoma, I think God is using this person to help us out with our vocabulary and provide us with a much needed and accurate word. Because we can, indeed, have attirude!

Here's an actual example of what attirude looks like from a recent Facebook conversation between two mutual friends. The context of this conversation is that Poor Thing has constant troubles with her insurance company paying her claims. "Ahem Insurance" says she's not covered; employer says she is and every time she has an appointment of any kind, or scans, that litany is repeated and Poor Thing is getting frustrated. She had just experienced another round of this garbage and Good Friend comes to the rescue. As best as I can recall the actual wording went like this:

Good Friend posts on Poor Thing's wall: "I woke up this morning feeling crappy and if a friend wanted me to call an insurance company I would."

And she meant it, too. All Poor Thing had to do was say, "Sic 'em!" It would have been a "have mercy" moment for that insurance company if she had!

(For the record, Poor Thing is so far removed from being a real Poor Thing it isn't funny! She's one of the strongest young women I have the privilege of calling "friend." Just like we have our attirude moments we also have our vulnerable and highly frustrate-able moments).

In the melanoma community we understand this emotion and we've all had our episodes. They are no fun and nothing to laugh at but we may as well laugh as cry. Right? It happens. We have attirude and heaven help the person who crosses us on those days! In case you missed it, I blogged about my own most notable episode. Those of us with attirude have our own self-proclaimed Poster Child.

All we need is a secret handshake and secret password.

What we really need is understanding. Melanoma is a beyond difficult disease to live with and no matter which stage we are at diagnosis, we live with a disease that we know can reach out and bite us at any moment. And often does. It has a well-documented history. What we don't live with in body we live with in mind. It's not uncommon for attirude to rear its head as appointments approach. Or when it's time to get results. Or when it feels like it. Sometimes we know we've got attirude and sometimes it comes out of thin air and surprises us and everyone around us.

I know we all have to cope with something and we all have our stresses. Melanoma pushes those boundaries until they burst wide open and flood our souls.

Note for the benefit of anyone reading this who does not have melanoma: Never, ever compare melanoma to an everyday pain of life. OK? That displays ignorance and a level of non-compassion that's unreal to us. If the best you can do is tell us "we all have problems" then please stay quiet. That's something best left unsaid.

If you ignore that warning then be prepared for a display of attirude. You just might get it.

Better yet, try to get an idea of what we live with. Read this article Newly Diagnosed?. Read a recent blog post Come Over To The Dark Side...Of Melanoma. Search this blog site for "melanoma."

With the statistics of melanoma being what they are, if you don't have melanoma or another type of cancer yet, hang on. The day just might come when you understand attirude from a more personal vantage point.

And while that's nothing to be grateful for, I will say that you'll receive far more understanding from us than maybe you've shown.

To those of you reading this who know exactly what I'm talking about...

I am truly and humbly grateful for your presence in my life.

After this post I blogged about attirude three more times. In order they are:




Monday, February 20, 2012

Melanoma Prayer Center Hits The Greater Internet

Until today Melanoma Prayer Center was solely on Facebook and the only way to avail oneself of it was to be part of the Facebook community. While MPC has not and will not be leaving Facebook, it now has a website making its spiritual resources and support available to a larger number of those of us affected by melanoma.

Please, if you know of people who are affected by melanoma, please share this site with them, especially if they are not on Facebook.

The web address is https://sites.google.com/site/melanomaprayercenter/

I will be putting prayers, words of encouragement, and music videos from Melanoma Prayer Center on Facebook on the website daily. You will also find a page of videos done by real warriors about their stories. And, follow the link Prayer Requests and you will find a special blog specifically for the webpage where you can post your own prayer needs and/or share your journey.

Blessings on the journey! We don't travel this road alone.

And I am grateful.

Friday, February 17, 2012

Venting and Addressing A Few Things About Melanoma

I'm a person of faith who has an attitude of gratitude that feels a compelling need to address a few things. In no particular order as I'd make them all number one if I could:

1) An "attitude of gratitude" or "being a positive thinker," or anything else that's upbeat and perky does NOT mean that that is a cure for cancer! That seems to be the idea that some people have. I'm seeing it over and over in Internetland. Maybe somewhere there really is a person that has said or written that being positive and having a good attitude while living with cancer will keep you alive and eventually you'll be healed because of that attitude, but no. Today people with a deep faith, attitude of gratitude, and a positive outlook will die. There is research that says it may help a person live longer and better. And, for me, it's my general outlook naturally and it does make me more pleasant to be around, but it is NOT a cure!

2) People of faith living with melanoma, either personally or sharing life with someone who has it, can get negative. We can have our fears, our doubts, our questions. We are all over the map. Sometimes we take it minute by minute and renew our faith daily. We choose to cling to God because the alternative scares us more than melanoma ever will.

3) When you feel negative, fearful, scared, doubtful, questioning...you are NOT ALONE!!!!! The millions of people worldwide who deal with melanoma ALL have the same feelings at some point or other. Please, do yourself and all of us a favor, and give them voice! I see it over and over, people think they are the only ones feeling these things, so they feel alone and isolated, and it's all so needless. We are not alone. No matter what we feel at any given moment, somewhere there are countless others feeling the same thing. It helps when we vocalize what we feel. And it strengthens us and it strengthens others for the journey. It also helps diminish those feelings when we realize we are not alone in them.

4) I'm here and you are free to email me. There are a lot of other people who will walk with you. Do you have melanoma? Are you family? Friend? Someone who wants to be educated? Someone ignorant and needs to learn? Someone involved in self-destructive behaviors like tanning that could lead to your own diagnosis and need us to open your eyes? There is a wonderful community of survivors who will hug you, love you, cry with you, help guide you, support you, jerk a knot in you, whatever you need and whatever it takes but you must take that first step and let us know you need us. We're in this together and we rely on each other for strength and support. And to vent. No one understands what we live with except one of our own. Melanoma is one of those diseases that people "don't get it until they get it". You can connect with fellow warriors of all ages and stages at Aim at Melanoma, Melanoma Research Foundation, Melanoma Prayer Center, Black Is The New Pink, and through blogs by warriors and their families such as Adventures With My Enemy...Melanoma and Hotel Melanoma. I have a list of bloggers. This is only the tip of the iceberg, but these are places you can start and follow the yellow brick road from there.

5) If you have been given a melanoma diagnosis, it is absolutely crucial, imperative, and vital that you be in the hands of a melanoma specialist! More than likely you'll get that initial diagnosis from either your dermatologist or primary care doctor. The minute they say "melanoma," tell them you want to be referred immediately to the nearest melanoma specialist oncologist and surgical oncologist. Generally, where you find one you'll find the other working together as a team. A general oncologist or an oncologist that specializes in another cancer is NOT who YOU need! Melanoma is not like other cancers! Aim at Melanoma provides a list of melanoma specialist oncologists and that's a great place to start to find where you need to be.

6) Remember, yes, what you've been told is scary. I won't lie to you. But, fear is every bit as much your enemy as melanoma is. Keep as clear-headed and focused as possible. You have a lot to learn and a lot of decisions to make. You cannot make the correct ones for you if you can't think straight.

7) Don't bury your head in the sand. That's dangerous and deadly. This is happening. It is what it is. Don't let it become more than that. Please read this particular blog post: It Is What It Is.

8) While melanoma has it's own diabolical and unpredictable nature; while it is what it is, remember, God is Who God is. Rely on God. Hold on to your faith. Hold on to hope.

As people of faith, we live with our eyes wide open but we also look beyond what our eyes can see.

And I am grateful!

Thursday, February 16, 2012

The 2012 Melanoma Patient Day at UNC

Yesterday, as I write, was "Melanoma Patient Day" at UNC in Chapel Hill, NC and was sponsored by The Melanoma Research Foundation, the UNC Division of Surgical Oncology, and the UNC Department of Dermatology. Registration was scheduled to begin at 12:30 pm and the presentations began at one. It was scheduled to end at 4:30, which it did run about 35 minutes overtime, but it was worth it! No complaints about that!

I knew I would meet fellow warriors; which I did get a chance to speak to several during the course of the afternoon. I had already planned to meet Black Is The New Pink, Al Estep. He arrived early, as did I, so we had a good chance to talk before the event started. I felt like I already knew him, but it was great to actually get to hug him and have real eyes to look into and a real voice to hear. It's nice to be able to put real faces with what I read online. (And, here's Al's version of the day).

I plan to spend the rest of this blog post telling you what I learned as I learned it. No skipping around. As of right now, there is no video footage of yesterday's presentations to link to. That may be because there will be presentations today for the health and science community and MRF will make them available at the same time. I don't know. MRF is great about putting their stuff online quickly so I'm sure these talks will be up soon and when they are, I'll go back and edit this to add links. Right now you'll have to take my word for what I write and know that there were other people who heard the same things.

This is what the afternoon was slated to look like:
Dr. David Ollila did the "UNC and MRF Welcome and Introduction." He also moderated and kept the afternoon flowing smoothly.

Dr. Antony R. Young, from Kings College London, presented "Sunscreens: Can They Protect Against Skin Cancer?"

Dr. Nancy Thomas presented "Diagnosis of 'Pink' (Amelanotic) Melanoma."

Dr. Keith Amos presented "Why Does My Scar Look Like That? Understanding Surgical Margins for Melanoma."

Dr. Justin Baker presented "The Current Role of Lymph Node Surgery in Melanoma Treatment."

Patricia Long, RN, MSN, FNP presented "High-Profile Melanoma Patients: Underutilized Resource."

Rob Lamme was supposed to present "Protecting Teens from Tanning Beds: An Update about the National and State Policy Debate" but he wasn't there. No explanation of his absence was offered.

Dr. Georgina Long, from Australia, presented "The BRAF Story-From Target to Treatment and Beyond."

Dr. Stergios Moschos presented "Understanding the Biology of Melanoma Brain Metastasis as the Basis for More Rational Treatments."

Debbie and Chris McDonald, with their daughter Samantha, presented "Melanoma: A Parent's Perspective."

And, Dr. David Ollila made the closing remarks.

OK. I got there plenty early and met a woman named Gloria. She was delightful. Anyone who thinks I look young is delightful. But what I want the melanoma community to take away from my meeting Gloria, is she had NO IDEA there is a thriving, growing, supportive community online. That tells me there are plenty of fellow warriors and their families who are going through this alone. As of yesterday, Gloria isn't on Facebook, but she does have email. People with email have access to blogs and online support groups that are not on FB, such as the one at Melanoma Research Foundation.

That also means doctors aren't helping their melanoma patients plug into support groups like they could. In their defense, they probably don't have time to get familiar with what's available. Also, I think we're more of a grassroots effort and our doctors really aren't involved at that level. Help your doctors and fellow warriors and their families out, if you can. This idea may need adapting to fit your own ability and budget, but get together a list of links to your favorite blogs, websites, and Facebook pages where you find support. If you can print out maybe the first page of some of your favorite FB pages so doctors can see the number of friends/fans/followers those pages have and they'll get an idea of the support that's available. If you can, put together a few packets they can hand out or make their own copies of.

When DR. Ollila made his introductory remarks he said that this was the third year of this symposium and the first year they would be in the triple digits of attendees. I'm not sure 100 people were there, but there were plenty and it was great to be in one place with people of all ages, both genders, and all stages. All races were not represented in the audience and that was disappointing to me. We've got to do better with melanoma racial awareness.

The first presentation, by Dr. Young, about sunscreens flew in the face of everything making the rounds on Facebook. Just about everyday there are posts from people reminding folks to wear their sunscreens year round to "prevent skin cancer." Some tell people to use them to "prevent melanoma." Folks, we've got to get this right! And the first place to get it right is in our own minds and understanding. I can't wait for the video of this presentation so you can see it for yourselves. As for now, trust me that this is what Dr. Antony Young said. Others heard it, too. Some info you may already know.

UVB causes the most damage and needs to be protected against. Check the bottle: the better UVA protection, the less UVB protection. There's a trade-off.

Also: let's use an example of a sunscreen with SPF 40. To get that SPF of 40, it has to be applied very thick three times a day...around a 100 gram bottle a DAY (he's from London and they deal in grams) to get the SPF that's on the bottle! Usually he said, we actually get around a SPF of 4...FOUR...because we don't apply the sunscreen as liberally and as often as we need to to get the maximum protection of 40.  Telling people to "use sunscreen" isn't going to help them as much as we think unless we also tell them to apply it properly and liberally and often. One hundred grams of sunscreen a day is a lot of sunscreen! This, though, is a point he made often and drove home. NOTE: 100 grams = 1/5 pound or 3.5 ounces = a little less than 1/2 cup. So use a little over an ounce each of those three daily applications.

He also made the point that people use sunscreen to stay out in the sun longer. Right? And that longer exposure is in conjunction with, usually, not having enough on in the first place! We aren't to use it so we can stay out longer. He also advised wearing dark clothing with a dense weave to protect from the sun and THEN using sunscreen properly, liberally, and often, to protect the exposed parts of our bodies. THAT's the best protection.

Now we need to understand what that actually protects us from when it comes to "skin cancer." This is where you may need to sit down because it's this part that really flies in the face of what I see on Facebook.

I tried to write this down as closely as possible to how Dr. Young said it. If we can protect against sunburn we can protect against squamous cell, but not basal cell, and not necessarily against melanoma. Melanoma is up for debate right now. Most studies show that sunscreen does not prevent against melanoma, but, a recent study in Australia shows sunscreen might prevent melanoma. Of course, that would be some melanomas, not all.

So, this is me talking, even when we don't use sunscreen like we should, there is a little bit of benefit albeit very, very minimal. To get maximum benefit, we need to apply very liberally and often, remember a 100 gram bottle a day per person. When we make posts on FB and advise people at other times, and wear sunscreen ourselves, we need to make sure we tell people correctly or we aren't helping anybody one bit! And we need to be honest about what they are protecting against. They are protecting against squamous cell. While that's great and important, it is certainly not correct to tell people they will be protecting against "skin cancer" or against "melanoma." They will not be protecting against basal cell, and the jury is definitely out if they are protecting at all against melanoma. (I can't wait for the video on this one!)

On to Dr. Thomas and her presentation of diagnosing amelanotic, or pink, melanoma. This was great and I truly learned things I had no clue about. "Amelanotic" melanomas don't have pigment and are often the ones that are "nothing" until it's too late. Two - eight percent of all melanomas are amelanotic and are hard to diagnose. This will be a must see video! Until then, if you have a pink or clear nodule or mass, on your skin or under it, get it removed and pathed! Especially if it bugs you, causes you concern, you have a funny feeling about, has an irregular border, or is changing...these tend to spread out before going inward.

Dr. Amos' presentation about our scars and Dr. Baker's presentation about lymph node surgery are too "medical" for me to give a synopsis. They were very informative, but they were nothing I need to "alert" you too until the videos are released.

There was nothing to alert you about from Patricia Long's presentation about high-profile melanoma people, either. But did you know Cybil Shepherd, Troy Aikman, and Arnold Schwarzenegger have had melanomas removed? I knew Sam Donaldson is a stage 3 survivor.

Moving on to Dr. Long and her presentation about BRAF! All I can say still is, "Wow!" She got into the genetics, which grabbed my attention! I have thought since I was a teenager that the answer to cancer lies in our genes. When I went to Meredith College, I was going to major in Biology, branch off into "genetics" in grad school and then go into cancer research and find the cure. This lady is living my young dream! My one beef with her is she used the "cure" word. Other than that, she explained, in layman's terms, BRAF, the history of how research has gotten here, the medicines that have been developed, the various mechanisms of resistance, clinical trials that are exciting, and she got into developing research around not only BRAF but MEK and a combination! This year they will be starting stage 3 trials aimed at preventing stage 4! Those trials will revolve around a combination of BRAF and MEK inhibitors.

What to take away, for now, since I don't have a video to share: to find melanoma trials that are going on worldwide go to clinicaltrials.gov and search for "melanoma."

Dr. Moschos was, also, a bit too medical for me. But, as someone with that stat of mine coming back in my brain, I listened with interest. Melanoma is the third most frequent cancer that goes to the brain.

The afternoon ended with the McDonald family. Samantha was ten years old in 2010 when she was diagnosed with melanoma. Hers presented in her inner thigh and for the longest time the doctor said it was nothing. It was so ugly that when it was finally removed, a plastic surgeon removed it and had it pathed. He got her in the hands of the team at UNC where her lymph nodes in her groin area were removed and her parents opted for her to have Interferon for a month. Right now this beautiful young girl is doing well. She seemed to be doing better than her parents, especially her dad! I can't blame him, I'm sure I wouldn't be able to talk in public about my child having melanoma either.

So, folks, I hope all of this shows the continued need to support melanoma research efforts as best as we can and as often as we can. I hope I've underscored the need to let our fellow warriors know we're here for them and they don't have to go through this alone! I hope I've shown the need to be accurate in our Facebook posts about sunscreen and to practice safe sun in our own lives.

I'd like to leave you with further, up-to-date reading about cancer research.

This link also has a link to a 60 page booklet in pdf, "Cancer|Changing the Conversation: The Nation's Investment in Cancer Research-2012". Melanoma has several pages devoted to it.

Here you will find facts and figures as they pertain to cancer research funding by the National Cancer Institute. At the bottom of that page you'll find a most interesting table. Melanoma is 6th on the list as far as being a prevalent cancer type, yet we receive less funding than the seventh! You'll also notice that there are more cases of lung cancer diagnosed than any other cancer, for now, and yet lung cancer receives less funding than numbers two and three, prostate and breast respectively. No one mentions, or takes into account, that melanoma is on target to being the most prevalent and deadly cancer of ALL cancers by 2022...ten years from now.

Our research funding needs to match that fact and it doesn't.

God is working on our behalf. And I am truly grateful. He's opening doors and the prospects are exciting. There are research teams around the world going through those doors and that's exciting.

Those doors are expensive doors to open and keep open.

Maybe at next year's Melanoma Patient Day there will be reports of astounding growth in research dollars.

I sure would be grateful if that's the case!

Sunday, February 12, 2012

Come Over To The Dark Side...Of Melanoma

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And I am grateful!

Saturday, February 11, 2012

Ignorance Of The Law Is No Excuse No Matter Which World You Live In!

Occasionally there are discussions surrounding the old adage "If I knew then what I know now, I'd..." and we fill in our own applicable blank. That good old twenty-twenty hindsight works practically every time! Sure wish my vision, bolstered by bifocals, could look forward with equal precision.  I sure wish there were "laws" that could be ignored and there would be no consequences. Gee, it would really be nice to literally be ignorant of some laws, break them unknowingly, and life never know the difference.

Unfortunately, ignorance of the law really is no excuse; there are consequences to breaking laws; and being a habitual law-breaker eventually does catch up to the perpetrator, whether the law is known or not.

Obviously I am "guilty" of being a law-breaker and have learned the errors of my ways. Unfortunately my penalty was melanoma and I'll never know if I was also given the death sentence until I, possibly, die from it. Were my tanning ways and days worth it when I was a teen? NO! Was it worth it to stubbornly hang on to my mole knowing my family history of melanoma?  Well, it did drive my Mama crazy! But, NO! In the end, hearing her constant nagging to get it removed wasn't worth it. This is one time I wish I could turn back the clock and listen to my Mama. Was it worth it to watch that blasted thing start to change and HIDE it? Was it worth it to watch it bubble, completely raise, turn black and still nonchalantly have a dermatologist appointment months away? Was it worth it to never learn the first thing about melanoma knowing that that was what I was dealing with?

There are a few basic "laws" of melanoma. The cancer knows them, knows them well, and is banking on its victims to not know them. Which, truth be told, we usually don't. We learn about melanoma often after we've been given that diagnosis and then we can't change it. It's too late then to say, "If only I knew then what I know now."

Periodically there are Facebook conversations around our melanoma. Are people listening to our stories? No, not as many as we'd like and it really does hurt when you know our stories and merrily go on tanning as if our melanoma was no big deal. And for our friends who aren't Caucasian, it hurts when we try and warn you that melanoma isn't prejudice one bit and you don't listen.  But when we find out we've made a difference and one person has listened and changed their cancerous ways, we get excited! There isn't much excitement in Melaworld. Would we have behaved differently if we knew then what we know now? Some people probably would have done differently. I wouldn't have and I know it. I'm one of those who didn't get it until I got it.

I broke the melalaws, didn't know it, got caught red-handed, and the doctor said, "Melanoma! Life sentence for you!"

Law One: DO NOT stay blissfully ignorant, stupid, and naive about melanoma. That's actually pretty easy. Do NOT turn a deaf ear and a blind eye to everything melanoma. The stories you hear are other peoples'! They aren't yours, but they can be one day, so make changes in your life! Like to tan either in the sun or in a tanning bed? Stop it! Don't buy the deadly hype that you look healthy and sexy. That hype and those lies are pretty expensive. Last time I checked Yervoy costs about $30,000 a dose. Don't know what Yervoy is? Look it up and keep reading.

Break law number one by not learning about melanoma. Stay ignorant. Worked for me. I was stage 3b at my diagnosis.

Law Two: DO NOT say "it can't happen to me." This law is closely related to law number one. Melanoma is OK with you keeping law number one as long as you break number two. Like I did. The beast is happy if you learn about it but don't apply it to yourself. It wants you to say to yourself, "It happens to other people. I don't fit the stereotypical person with melanoma."

Break law number two by thinking melanoma will never happen to you. Worked for me. I didn't realize I could get it until that mole bubbled, raised, turned black, and finally bled. That bleeding convinced me that I did, indeed, have melanoma, even before I went to Duke Urgent Care and had it removed. I knew. By then though, I had also already broken law number three and didn't know it.

Law Three: Understand that melanoma is NOT "skin" cancer. I know that's what it's called. Melanoma knows it, too and is getting quite a good laugh as it racks up victims who fall for that line. If I had bothered to learn about melanoma and not broken law number one, I wouldn't have broken number two and I surely wouldn't be guilty of breaking number three. Breaking number three is probably the deadliest law to break. Because I thought melanoma was "skin" cancer, even though mine was in a mole, it was still on my skin, I figured the doctor would cut it out, sew me up, that would be that, and my life would go on as it had before the mole was cut out. I didn't have a clue, not a clue, how wrong I was. I'm coming across so many other people who thought the same thing! We have GOT to change our understanding AND naming of melanoma.

Break law number three by thinking "this is nothing but skin cancer." Act as if you've got plenty of time to deal with that changing mole or place in your skin or in your eye or in a nail bed. Fool yourself into thinking you'll just cut it out and all will be well. Worked for me. Worked too well. Remember that stage 3b? That can change at any time and the number won't go down. This so-called "skin" cancer isn't; but, it is deadly. Your skin can die along with that tan.

Law Four: Don't underestimate melanoma. Don't ever think you're cured. Don't ever get soft on being vigilant. Don't ever think it won't come back, even if it has been gone twenty years. Don't think if you're stage 1 that you're safe because the truth is that it can come back at stage 4.

Even if you've broken all the other laws like I did, don't break law number four. Works for me. So far.

And I am grateful.

Friday, February 10, 2012

Mel! I Got You, Mel! Singing the Walk Nov. 17th

Recently I adopted Rich McDonald, proprietor of Hotel Melanoma, as my big brother. While he has yet to claim me as his little sister, he has made me Chaplain of his establishment and yesterday, as I write, called me "The Boss," though I don't know what I'm "boss" of (I heard that. Be quiet!) So some kind of nepotism is alive and well and I'm the recipient. It has taken a while for me to see nepotism in action but I like it!

What I'm really excited about is, after our AIM Walk November 17th, there's going to be an after party and while some are go-going on table tops, Rich and I will lead a group sing-along of some of his songs that make MelaWorld sing! As a preacher it excites me that I get to "sing the walk." We talk about walking the talk all the time in church. This time I'll sing the walk...with the one who writes the songs.

OK, he's not Donny Osmond or David Cassidy. Harry Chapin, Jim Croce or the group that sang "Crimson and Clover" over and over. And over. He says he can't sing. Define "sing." He does have the cool shades and banker-lawyer smugness so I have no qualms about him pulling this off! Especially since he'll be drowned out by everybody else! I sure am hoping Anne picks a place with a karaoke setup or somebody in the group better have perfect pitch.

For me, this is my chance to fulfill a teenaged dream and do it in a meaningful setting, more meaningful than I ever dreamed. I was one of those kids whose bedroom floor was their stage; their stuffed animals were their adoring, screaming fans; and their fist was their ever-present, always-handy microphone. And, in that dreamworld, man could I sing! Real life told a slightly different story.  But given the right song with the right key and the right pitch and the right earplugs, I'm still not too bad. Just ask my kids. On second thought, ask my two-year old granddaughter.

Whether we can carry a tune in a bucket or not, our songs matter. They help define us. They stir our souls, for better or worse. They can set a mood and a tone. They are a rallying point. They unite us. The Hotel Melanoma songs are our stories. We read them, sing along with the videos Rich provides with each, and know we're in good company. We know we're laughing and crying, nodding and commiserating with others through cyberspace.

To actually warble one or two with our melafriends, in the same room, face-to-face would be amazing. To give them voice with the one who gave them words would be astounding. Maybe dreams really do come true after all and maybe reality is better than dreams.

Need I say I'm looking forward to Saturday November 17th? It's not just the "Walk." It's not just the"singing the walk." It's the camaraderie. It will be giving real hugs to people I've come to know, love, and respect online. It will be putting voices with the faces. It will be really standing with the people I stand with.

There are four of us who call ourselves "Power Rangers" and we'll all meet: Rich, Chelsea Price, Al Estep, and myself. We've all got participatory plans for this after party, except Al! He may be the person slinking out the back door saying, "I do not know these people! I do not know these people! I do not know these people!" Rich, we may need to make sure Al helps lead the sing-along while Chelsea table dances. We need to make sure she has a pair of go-go boots.

Make plans to come to Charlotte, NC Saturday November 17th! Make plans to walk the talk. And then make plans to join us later as we sing and dance the walk together.

Join in the sharing of gratitude.

NOTE: Since writing this post, I've written yet another (a third) post about our Aim Walk.

Wednesday, February 8, 2012

Bob Marley, Let's Work Together, Make Some Changes, And Stop Calling Melanoma "Skin" Cancer!

I admit it. I've become fascinated with Bob Marley recently. His life, his lyrics, and his death. Death from melanoma, or as some call it, "skin cancer." Need I say,"UGH!"? I'd rather say, "Houston, we have a problem and I think the problem is us."

Marley sang a song Wake Up and Live. Part of it goes like this:
Wake Up and Live Ya Wake Up and Live
Wake Up and Live Now
Wake Up and Live

Life is one big road with lots of signs
So when you riding thru the ruts
Don't complicate your mind 

Hold that thought. As I've read accounts of his death, I've noticed different words and terms used: that he died from melanoma, malignant melanoma, brain cancer, cancer, skin cancer. I've read that once diagnosed with melanoma he kept it secret until he was obviously ill...roughly three to four years after his diagnosis. I've read what appears to be disbelief that he died from "skin cancer."

Houston, I think that's a large part of our awareness problem. Why people don't get that melanoma is a deadly, big deal until they get it. Why people think melanoma is "just skin cancer." Why people think it can be cut off and all is well.

I think we've complicated peoples' minds and thrown up the wrong signs and they're riding through the ruts looking at what we're giving them and it doesn't make sense. We're losing them and  they're lost because of us and how we word this. The more we learn about melanoma, the more we learn it's not just skin cancer, we learn it doesn't always begin in the "skin," and we learn that it truly is a real beast all its own and unique in the cancer world.

Could we call it "melanoma?" Or even "melanoma cancer?" Can we drop the word "skin?" I hate to say it, but I'm beginning to understand how people think what they think. Why stop tanning, either in the sun or in tanning beds, when the worse they think that can happen is "skin" cancer? They've got plenty of skin, it's on the surface, you cut the offending piece off, it heals or get plastic surgery, life goes on and so does tanning. People understand "brain" cancer. They get the seriousness of pancreatic cancer. By comparison, "skin" cancer almost sounds like a sick joke. Until the "joke" is on them.

Don't bury your thoughts
Put your vision to reality, Yeah! (
a couple more lines in Wake Up and Live)

Can we get real about melanoma and help others get real? It will take change and that's OK. We can do it. We can drop the word "skin" when describing melanoma and insist others drop it too. I think it will be a great beginning in changing peoples' attitudes towards this disease. AIM at Melanoma will you help? How about it Melanoma Research Foundation? The Skin Cancer Foundation? Others? Us?

I live in the world of the church as well as in the world of melanoma, and then there's that political world, too. In the church, all denominations, are being told and have been told for a while now, that we must change. "Church" as we know it isn't working for younger people; we must make changes or we die. We see the same need for changes in the political spectrum. The church and countries simply cannot continue to keep the all the same practices and hold to all the same old ways or death is inevitable. Those changes aren't easy; it's often "them" that needs to change and not "me;" proposed changes take time to explore, adopt, become a way of life...if they ever do make it to that stage of being that new way of life. Once rigor mortis sets in, it's too late.

Maybe one simple step to help people understand melanoma isn't just skin cancer is to stop calling it skin cancer. Call it what it is and it is melanoma. Period. When people say anything about it being "skin cancer," we should correct them and say, "No. Melanoma. Let me tell you about melanoma."

I don't know but this makes sense to me. If we can change the perception and image of melanoma, if we can, indeed, put our vision to reality then maybe people will listen and our message will make more sense. Melanoma is not just skin cancer. It doesn't just originate in the skin. It can't be cut out of the skin and then life rolls merrily along. That's not reality at all. So why lump it in the "skin" cancer category?

Cousin Bob, I'm with you. I want us to wake up and I want people to live.

You sing it and I'll be grateful!
(Here's a link to my first post that draws on Bob Marley)

Tuesday, February 7, 2012

Bob Marley: My Soul Brother

Robert Nesta Marley was born February 6, 1945 and died May 11, 1981. At age 36. Of melanoma. He didn't fit the "profile" and his didn't begin where we typically think of melanoma beginning, namely in a mole. His began under a toenail.

Bob Marley, still revered for his reggae music, was diagnosed with  melanoma in 1977 and advised to have his toe amputated, which he refused to do and kept on touring. And his untreated melanoma kept on growing and spreading. By the time he decided to seek treatment, it had spread to his lungs and brain. He waited too late to fight the fight of his life and he died from melanoma. According to his biography on Wikipedia, "His final words to his son Ziggy were 'Money can't buy life'."

And everything wasn't all right, either. It's still not for too many people who just don't think this can happen to them. Melanoma has very low statistics in the non-Caucasian population. But the statistics are there, they represent real people, and when you become part of the ugly side of a melanoma statistic...then this information takes on a new sense of urgency and importance.

This post, in memory of my Soul Brother, Bob, is dedicated to my living soul sisters and brothers who happen to have more skin pigment than I do.

When College Kid, who is also my favorite theologian, was 9, Michael Jordan was enjoying his second heyday as America's Basketball Star Unparalleled. He had the moves, the jumps, and the dunks. My little emulator didn't just dream of being "like Mike." No, in his white kid mind, he was Mike! Anything Mike could do challenged him to do it, too. He was a hotdog on the court and relished showing off his fancy foot work. He lived and breathed Michael Jordan. And, yes, he did have Air Jordans.

One day, when he was 9, I had read an article in the paper saying that scientists had discovered "Lucy," a skeleton in Ethiopia that proved everyone on earth was descended from her and we all share DNA. My nine-year-old was telling me Mike this and Mike that and he was all excited. I interrupted him to tell him what I'd read in the paper about "Lucy" and we all share DNA. My white kid son looked at me, his eyes grew ten sizes, a smile covered his entire face, and he exclaimed, "You mean we're RELATED?!?!" I could see the wheels rapidly turning in his brain! That gave him new momentum, as if he needed more, to practice harder and keep improving. It was in his DNA! He was kin to Michael Jordan! Life couldn't get better than that for my pale kid.

We're related. Me and Bob Marley. It's not just our DNA, we've got a common link with melanoma. I think Cousin Bob might approve if I give our relatives some facts and figures. So, for all my non-Caucasian kin, this is for you. Please read, take to heart, and share. Keep that check on your skin, but also on the soles of your feet, the palms of your hands, and all your nail beds, because those are the places you are most likely to get melanoma.

This is copied from Skin Cancer. Org: please click on the link to read updated info!
  • Asian American and African American melanoma patients have a greater tendency than Caucasians to present with advanced disease at time of diagnosis.
  • Skin cancer comprises one to two percent of all cancers in African Americans and Asian Indians.
  • While melanoma is uncommon in African Americans, Latinos, and Asians, it is frequently fatal for these populations.
  • As few as 48 percent of melanomas in African Americans are diagnosed at an early stage, compared to 74 percent in Hispanics and 84 percent in Caucasians.
  • The overall melanoma survival rate for African Americans is only 77 percent, versus 91 percent for Caucasians.
  • Melanomas in African Americans, Asians, Filipinos, Indonesians, and native Hawaiians most often occur on non-exposed skin with less pigment, with up to 60-75 percent of tumors arising on the palms, soles, mucous membranes and nail regions.
  • Basal cell carcinoma (BCC) is the most common cancer in Caucasians, Hispanics, Chinese, Japanese, and other Asian populations.
  • Squamous cell carcinoma (SCC) is the most common skin cancer among African Americans and Asian Indians.
  • Squamous cell carcinomas in African Americans tend to be more aggressive and are associated with a 20-40 percent risk of metastasis (spreading).
  • Skin cancer represents approximately 2-4 percent of all cancers in Asians.
  • Among non-Caucasians, melanoma is a higher risk for children than adults: 6.5 percent of pediatric melanomas occur in non-Caucasians.
Bob Marley sang Three Little Birds which put forth the idea, "Don't worry about a thing, cause every little thing gonna be all right."

If we all pay attention to our bodies and get things checked out at the first sign of trouble, and don't put things off until it's too late...well, things will have a much better chance of actually being all right, especially in the world of melanoma. Learn a lesson from my Soul Brother, Bob. He had money. He had fame. He had talent. He had melanoma. It wasn't all right for him because he didn't know his enemy and take it seriously until it was too late. 

I leave you with him singing Three Little Birds. He was many things. Add "melanoma prophet" to the list and take this seriously.

We'll all be grateful.
(here's a link to my second post that draws on Bob Marley)

Sunday, February 5, 2012

Super Bowl Sunday, Hunger, and Cancer Research

It's probably not too hard to figure where this is going, but I'm going there anyway. The figures are astounding, and frankly, troubling, embarrassing, and I'm really not to sure that God's smiling about this at all. If I had to guess I'd say God's far better at math than me and if I can do the math, well, yeah, God's probably not smiling today.

People affiliated with today's Super Bowl are though! Can we say "BONANZA!" These figures are from the Huffington Post and about today's game. A game. One. One face-off between two teams. Not a whole season or a decade of games. One game. One. Several grown men are going to see who can rack up the most points playing with a football, getting dirty, tackling and running and kicking and throwing. It won't take too terribly long out of today's 24 hour period.

For their playtime, the men on the winning team will each pocket $88,000. Yes, that's correct and not a typo. Eighty-eight thousand dollars for one game. But they're the winners. The "losers" on the other hand will each pocket a "mere" $44,000. Forty-four thousand dollars to lose a ballgame. Either figure is more than most people make in a year and these men will make it in one ballgame.

Those sponsors who buy air time during this one ballgame will pay 3.5 Million dollars for each 30 second commercial. $3,500,000 for one commercial.

Now, we can say, well that's the NFL or corporations...entities. But there really are people making those financial decisions. However, for arguments sake, let's call them the NFL and corporate entities and look at what ordinary people are doing to bankroll today's one game.

According to the Huffington Post, an estimated 5 million people will buy new TVs for today's game! Now, I'm pretty sure that not a one of those TVs will cost $100, but let's say every one of them costs $100. That would be an estimated $500,000,000 (five-hundred million) dollars spent on new TVs! If those TVs even cost $200, that's one billion dollars. To be ready to watch the big game.

Fans are expected to spend $11 Billion (eleven billion) dollars on Super Bowl related purchases. The Indianapolis economy is expected to grow by $200-250 Million due to the Super Bowl alone. As you look in the stands, those folks paid a minimum of $2100 per ticket. Hot dog not included. And if you want 34 of your nearest and dearest watching the game with you in a field-level luxury suite, you paid $650,000 for the privilege. All of the above can be found in this article.

I'm a lectionary preacher and today's Scripture readings were Isaiah 40: 21-31; Psalm 147; 1-11, 20c; 1 Corinthians 9: 16-23; and Mark 1: 29-39. God and later Jesus God-Incarnate, stand with the invisible of society, the broken and weak. The sick and hurting and despised. Those are the people God aligns Himself with. So, I preached these passages, on Super Bowl Sunday and that's how I came to have those figures handy. That led to me to search out other figures.

These come from Catholic Relief Services and Stop Hunger Now. Worldwide, each day, 25,000 people die from hunger...16,000 of them are children. During the hours of the Super Bowl, several thousands of people will die from hunger and over half of them will be children. That's a statistic for one day.

Each year, five million children will die from hunger and so will over 3 million adults.

One billion, 1,000,000,000 people around the world are seriously food challenged. They are hungry. They aren't missing their mid-morning snacks; they're missing meals. Daily. And starving.

Each year, 17,000,000 babies around the world are born underweight due to inadequate nutrition before and during the mother's pregnancy...not due to other factors...due to malnutrition.

Today, billions of dollars are floating around because of a football game.

It would take $195,000,000,000 (195 Billion) a year to end world hunger.

Something's out of whack with this picture. I really don't think God's smiling.

So, since I have melanoma and am curious, I also look up what's spent on cancer research. That takes money that, somehow or another comes from people...tax dollars, donations, etc.

This is the latest table from the National Cancer Institute:

**Source of spending data: NCI Office of Budget and Finance (OBF).
Cancer Type  2008 Spending
(in millions)
  2009 Spending
(in millions)
    2010 Spending
(in millions)

They also add: "Other federal government agencies, including other NIH Institutes and Centers, the Centers for Disease Control and Prevention, and the Department of Defense, fund cancer research. In addition, state and local governments, voluntary organizations, private institutions, and corporations spend substantial amounts of money on cancer-related research."

I couldn't find a tally of all the monies taken in for research, but somehow, I think if they were able to raise the kind of money the Super Bowl does and on the scale of the Super Bowl, we would be further along than we are. Strides are being made and they're exciting, but research costs big bucks. Treatments, once they've been developed, cost big bucks. It ain't cheap saving lives.

The life those research dollars save may be your own or the life of someone you love. The dollars thrown into all aspects of the Super Bowl will do many things, but saving a life probably won't be on the list.

The life saved when dollars are given to feed the hungry may not be yours but it will be someone made in God's image. The blessing will come back to you. The blessing that will be given to someone else will be far more lasting than any memory associated with today's game.

I'm sure today's game will be great fun for many people. I'm just not so sure God's going to be smiling at it.

I have a feeling God's going to be with the hungry and the sick. The broken and the tired. The invisible. God will be in society's cheap seats, not in a $650,000 luxury suite.

This short, simple study of where some of our dollars can go has been eye-opening and eye-popping. For me.

I've got decisions to make. I like walking in the direction God is heading and I like Him to look at me and smile. I haven't bought a thing associated with the Super Bowl and don't plan to watch it. I could care less about it. But I have other priorities that need to be re-examined in light of this.

I have to practice what I preach. Walk the talk. We all are called to do that. God's got my attention.

And I am grateful

Saturday, February 4, 2012

World Cancer Day: Let's Kick This "Day" Off The Calendar!

The World Cancer Research Fund states (in 2012), "There are an estimated 12.7 million cancer cases around the world every year, with this number expected to increase to 26 million by 2030." That's just 18 years from now and that's a HUGE statistical increase! This, obviously, includes all cancers.

Given numbers like these, and these numbers represent real people, maybe every day should be World Cancer Day. World Fight Cancer Day. World Support Cancer Research Day. World Stop Burying People Who Die From Cancer Day.  These numbers represent me, I already have my cancer, melanoma. They represent you and your loved ones, too. Future loved ones. Loves ones who aren't even a twinkle yet.

Did you know that one in three of these cancers may be preventable? I'm not talking safe sunning and staying away from tanning beds; I'm talking about changing our diets, exercising, and maintaining a healthy weight. I'm telling you, this site is fabulous and loaded with information! Folks, this is doable! But we have to be willing to do it. We have to be willing to make the lifestyle changes that will reduce risks. Making these changes won't prevent every new case. There's still that genetic component and there are still other factors, but if you can cut your risk, why not? If you can cut your family's risk, isn't it worth it?

I know I'm a fine one to talk. People who know me know that I've never watched my diet. OK, I do "watch" it, I know what I eat and I choose what I like. I've never been a fruit and green veggies kind of gal. My Mama tried, I've got to hand it to her, bless her, she tried. She wasn't woman enough to do it, though. People who know me, know if pressed, I can make "exercise" a four letter word. My Daddy tried, I've got to hand it to him, bless him, he tried. He wasn't man enough to do that either. Need I say I've never been much, therefore, on "weight maintenance?" Well, I do maintain.

But I can honestly say that if I knew then what I know now...my parents would have been man and woman enough because I would have listened. If I had known then what I know now, I would have gladly made those simple changes. Now that I do know now what I now know, I've got changes to make.

Here's a link to a list of the "top" 14 cancers worldwide with info on prevention for each. Read it and learn. I learned something I did not know about skin cancer. "The evidence also shows arsenic in drinking water is probably a cause of skin cancer, though this mainly affects areas without a regulated supply of drinking water." Wow. I have never heard that. Arsenic?!

Finally, here's where to go to find world cancer statistics. See how your country compares to others. Here you will find links to: World Cancer Statistics, World Cancer Rates, Men's Cancer Rates, Breast Cancer Rates, Bowel Cancer Rates, and Oesophageal Cancer Rates (the WCRF is located in the UK and that's how they spell it).

There are a lot of National Health Days, which include various cancer awareness days. We can wipe some of them off the calendar and wipe this one off, too. Wouldn't that be wonderful?

It will take working together, making lifestyle changes, helping people in less fortunate countries have what they need like the right foods and clean drinking water, supporting research, prayer. It will take work and it won't be easy. But it WILL be worth it!

We have the info. We have each other. We aren't in this alone. Whether you already have cancer or whether you will in the future, we're together in this.

And I am grateful.

Thursday, February 2, 2012

Lies, Lies, and More Damn Lies

We all tend to believe what we want to believe, especially if it's something directly applicable to our lifestyles and especially if some self-appointed guru says it's just the thing to do. Me included. Whenever I see something in the news touting the health benefits of strong, black coffee I say, "Oh yeah!" and go perk a pot. When I see something that says it's cancer-causing, I say, "You don't know what you're talking about." The fact that I already have cancer, melanoma to be exact, doesn't enter into my one-sided discussion. Coffee didn't cause my melanoma. Authorities back me up. Quacks don't. I'm just waiting for someone to study the obvious health benefits of cheesecake so I can point to it and say, "See, I told you so! I was right all along!"

I think we're all like that about something, to some extent. If it's something minor we can laugh it off. When it's something major and people are dying and will die because they choose to believe lies because the liars boost what they want to do, and because the liars are well-known gurus, well, it's time for this pot to call that kettle "black." Black C to be exact. Melanoma.

I'm a reformed "pot." I tanned courtesy of good ol' Sol in my teen years. I'm 52 as I write. Do the math. We're not talking yesterday. More precisely, I basted until I turned a nice bright red. Johnson's Baby Oil was perfect for the job. On occasion, I feel asleep in the warm sun and burned to a nice crisp. It didn't happen often, but when I was diagnosed with melanoma, at 48, I was told "once is enough."

Lie number one: "I played outside all the time growing up and got lots of tans and burns and I'm X-years old now and no sign of any skin cancer, much less melanoma, so I don't have a thing to worry about. If I was going to get it I'd get it by now. Besides, I don't have a family history and I don't have any weird places on my skin. Leave me alone already!"

Hello Kettle. You bought a lie. Stay vigilant. Melanoma doesn't care how old or young you are when it attacks. The damage you did is there and is permanently recorded in your skin and body. I know of an 83 year old man who recently died of melanoma. I know of a 90 year old woman who was recently diagnosed. Nobody expects to live an otherwise relatively healthy life and think they'll die from old age only to have melanoma rear up and bite them in their golden years. Kettle, protect your children. Don't let them sun and burn. Learn safe sunning practices and teach them well. I know of a three year old with melanoma and two other children under ten with it. Pediatric melanoma is rare, but when it's YOUR child, statistics don't matter. For the record, sunning isn't associated with pediatric melanoma and neither is family history. It's origins are truly unknown at this point. But it happens. Keep a check on your children's skin and moles and have anything checked out, removed, and pathed if you are concerned. Just like it shouldn't happen to our elderly, it shouldn't happen to our children and teens. But it does.

Lie number two: "I just love my tanned self and how great I look tanned so I tan all the time! When the sun's not shining you can find me at the local tanning salon. I love tanning beds so much I might just buy my own! They're good for you! The health benefits are enormous and I'm helping my body make so much vitamin D that I just can't stand myself! Dang but I'm awesome, my tan is amazing and life is so good because of my tan and tanning beds! Hallelujah thine the glory, revive us again!"

Hello Kettle. You bought, and are still buying, a lie. Since you apparently like the "finer things" in life, you'll be happy to learn that melanoma is expensive! You're buying a costly cancer. Better stop your ways or it will cost you your life. It still might. Even if you stopped the tanning bed habit today, you've already damaged your skin and body beyond repair. And I really hate to tell you this, but you don't look as fabulous as you think. You look fake. Those of us in melaland can spot your tanning ways a mile away. And if your skin doesn't already look like a piece of leather, it will. Give it a little time. I will say that I'm praying that leather-look is the worst price you pay. You really don't want to go whole-hog and experience the costlier side-effect of tanning, namely melanoma. Leather isn't cheap. I hope that's the most you pay.  But, let's face it, it probably won't be because you bought...

Lie number three: "I'm a tanning salon owner and I'm here to tell you that these babies are safe and magnificent! Yeah, yeah, I know the anti-tanning hype. Blah, blah, yada, yada, yada. They can't prove a thing. They know tanning is really good for you; they're just mad they've got melanoma and they've got to blame somebody and we're convenient. Trust me, I wouldn't lie to you! Not only can I sell you a great tanning-package, but thanks to me, you'll tan safely and look great and your body will be healthier and this tanning bed experience will keep your body manufacturing plenty of vitamin D, and you know how much you need vitamin D, don't you? Trust me."

Hello Kettle. You bought a lie because they bought a lie. Like I said, we all tend to believe what we want to believe. You want to believe tanning is good for you and the tanning bed owners and sellers want you to believe it, too. The World Health Organization wants you to believe the truth. This will get you started with plenty of links to follow. The FDA has, also, stepped up to the plate and issued information in support of the WHO statements. Again, there are plenty of links available. But just like there are plenty of links to truthful information...well, there are still plenty of tanning beds available. They aren't illegal. Just recognized carcinogens. But let's downplay that little fact because there are tanning gurus who do. And I'm not talking about tanning salon owners. Nah! They're small potatoes now that Big Guru To Way Too Many, Dr. Oz, has stepped up and offered ...

Lie number four. Dr. Oz actually stated on his show, with guest Dr. Joseph Mercola, he is "rethinking tanning beds."   You can find videos of this televised conversation on youtube.  He states it. Dr. Oz is rethinking tanning beds for "health benefits". Later, when the American Academy of Dermatology and AIM at Melanoma called him out and demanded a retraction, he did address the issue and concern on his blog. It is not a retraction at all but a lame attempt at appeasing people who dare to call him out and say he's wrong.  He has yet to retract his statement in his blog. He has yet to retract himself on his TV show. He probably won't because his guest, Dr. Mercola, sells tanning beds on his website. Tanning salon owners and private owners of tanning beds are having a field day thanks to Dr. Oz's statement! A simple search and you'll see the results yourself. People who hang on Dr. Oz's every word and trust him have been handed ammunition to tune deaf ears to the melanoma community and ignore our pleas and stories not to use tanning beds. 

To update about Mercola selling tanning beds, please follow this link: https://www.consumer.ftc.gov/blog/2017/02/259-million-refunds-mercola-tanning-beds

Hello Kettle. Newsflash. Ammunition is deadly in the wrong hands. Ammunition's primary purpose is to kill. Ammunition doesn't look at its victim and can't because it's neutral. It's a tool. It can stay in that gun and be a threat or someone can pull the trigger and that ammunition turns the idle gun into a smoking gun and trouble ensues. "Someone" causes harm, injury, or death.  Unfortunately, this time the "someone" is a doctor that has quite a following and because he said what he said and they heard what they heard they're going to believe the lie, his damn lie, and keep tanning and our melanoma community will keep growing.

We all want to believe what we want to believe. Garden peas! God's trying to get through to people about these dangers, but who wants to believe Him? Who wants to believe us? They say "a picture is worth a thousand words," and I can show you pictures and videos of real melanoma on real people but folks still aren't going to necessarily believe. It's a shame. A crying shame. But God's at work. Just this morning, I logged on knowing I was going to write this, and guess what? Melissa had "lies" on her mind! As I've been writing this, Rich had Groundhog Day and how nobody understands us until they are us on his mind!

You know, at the end of Gone With the Wind, Scarlett tearfully implores, "Rhett, if you leave, where shall I go? What shall I do?"

Rhett looks at her and responds, "Frankly, my dear, I don't give a damn."

That was in the movies. This is real life. We're surrounded by lies, lies, and more damn lies about a lot of things, melanoma being one of them. We're also surrounded by people who know the truth, live the truth, and do their best to share the truth. "Where shall you go?" We'll tell you. "What shall you do?" We'll tell you that too, but you need to hear us, listen, and do like we say.

Because we do give a damn.

And I am damn grateful.