Saturday, March 23, 2013

Melanoma Prayer Center Turns Two!

I started MPC on Facebook two years ago today and, MY!, how I, and it, have changed! I blogged last year about how MPC came to be, what it's about, and what I had learned up to that point. Here's a link to that post as it's still valid.

Today, I celebrate! To say I love my melahomies would be an understatement! They are the best people on the planet!

Yesterday, as I write, Rich McDonald, Proprietor of Hotel Melanoma, did something he never dreamed he would do. And it didn't prove fatal (as he feared). He penned me a celebratory song using a Meatloaf tune! O Happy Day! It will cost me. In return, I promised him I would donate a nickel for every MPC like to the place that saved his life. So I'll be donating to the University of Colorado Research Foundation Melanoma Research Fund, and as of right now, MPC has 1798 likes. Do the math. I'll also be adding $3 because 60 people liked the MPC post last night (as I write) where I shared his song.

I celebrate the year that has passed! God has graced me with more focus and a sense of direction. He has also brought many more people into my life via MPC; strengthened many relationships; opened a few doors for me to meet melahomies and participate in an Aim Walk in Charlotte, NC; start up a few support groups on FB; and be there as some have left this earth and run their race through God's Gates of Praise and into His waiting arms.

Focus One: WE NEVER lose our battle or race. Never. People who come up against melanoma fight too damned hard to ever have their names in the same sentence with the word "lost." People who say that really need to stop and think about what they're saying about someone who fought the fight of a lifetime, for their life, and fought right up until the second God told them it was OK to stop. Those people are NOT losers! Ever!

Focus Two: To repeat, over and over, to everyone with melanoma and to all who may get it one get in the care of a melanoma specialist! That is crucial, imperative, vital to your fight and to your life! I'm trying my best to get it out there in the medical community to REFER your patients when they are diagnosed with melanoma, any stage, to a specialist...and I don't give a flip if a person has "to drive." I drive over two hours each way to see mine, as do many, and it is WORTH it! We drive anywhere else we want to. Aren't you worth a little time to be in the best hands when fighting this disease? Oh yes. You are! Here is a link to Aim at Melanoma's list of melanoma specialist oncologists. Where you find them, you will, usually find surgical oncologists and dermatologists who are also melanoma specialists.

Focus Three: To get "melanoma" removed from the "skin cancer" category. It is in a league all its own; doesn't need skin to begin, grow, or spread; and calling it skin cancer is a HUGE part of why people don't take this seriously. Until it's too late. Call it what it is and it's "melanoma."  "Malignant" can be dropped as that is what melanoma's malignant. If it isn't malignant (cancer) then it's not melanoma. We need to step up the efforts in helping people understand that it's just not found in a funky mole. We also need to step up efforts in helping people understand that it doesn't just come from tanning beds or sun-broiling. There's a genetic component, and there are people with this disease who can't point to a reason why they have it. There is still much to be learned. We've got to also do better at helping people understand that this is not just a disease that strikes Caucasians but strikes people of ALL skin tones, heritages, races, ages, and both genders, regardless of tanning habits. Sometimes, we in the melanoma community, can get too narrow in our awareness efforts and focus only on one thing. It's always an important "one thing," but it's never the "only" thing.

Focus Four: We ALL have something to contribute. For many people and for a variety of reasons, their melanoma is "their" melanoma and they don't share their story. Please, know that you've got something to say and you can make a difference in someone's life and maybe prevent someone from getting this disease. This disease robs us all of a lot! Please don't let it steal your story. Claim your battle, place it in God's hands, and watch Him bless it and use it to His glory.

That's how MPC came about. I was diagnosed at stage 3b in 2008. I've learned a lot, heard more, and seen enough to last a lifetime. I know the disease I live with and may, one day, die from. I want to diminish this disease. I want to be part of its demise. I want to be part of bringing it down. I may not be alive when that glorious day happens on this earth, but it WILL happen. Of that, I am convinced. Melanoma is God's enemy and God's enemies never win.

They never win.

Melanoma is going down and I get to play a small part in that.

And I am grateful.

Please, play a small part in that yourself. You won't regret it.

You, and all of us, will be grateful!

Wednesday, March 20, 2013

Melanoma? GET A MELANOMA SPECIALIST! and keep reading

I just want to cry. But, that wouldn't accomplish a darn thing. So, I'm going to drag out my trusty soapbox, the extra large one with plenty of room to move about on, and preach. Sista's GOT to preach! I know I've got a fully-packed "Amen!" Corner, so this isn't for them. This is for two groups of people that need to hear this. First to certain doctors and then to melahomies who don't know but need to.

Doctors, first. Now, mind you, this isn't to all doctors. Only the ones who, for some unknown reason to me, will NOT refer their patients with melanoma to melanoma specialists! I don't get it, but I'm getting plenty of messages about it and I am ticked. Really ticked. I take my melahomies health and well-being very seriously. Why don't you? Doctors who DO refer, please back me up with your colleagues here.

Doctors, you know what your specialty is, if you have a specialty. You know if you are a melanoma specialist oncologist or if you are a general oncologist or if you are an oncologist who specializes in a cancer other than melanoma. YOU KNOW! Your patients, however, may NOT KNOW!!! Let's be frank. You're possibly killing them by not referring them. There are some general oncologists who are keeping up with the world of melanoma. Good. There are some oncologists who specialize in cancers other than melanoma who are keeping up with the world of melanoma. Good. If that's you and you can get your patients the treatments they NEED, if you have access to Yervoy and IL-2 and Zelboraf and anything else they may require...fine. But, if you DON'T and if you are NOT up on the world of melanoma, PLEASE, get your melanoma patients into the hands of a melanoma specialist!

Their very lives are at risk and depend on it! They are trusting you and the vast majority may not even know there IS such a doctor as a "melanoma specialist." They aren't asking you about referring them because they DON'T KNOW TO ASK! But YOU do!

To be fair, you may not know exactly who you need to refer them to. Let me help you out. Aim at Melanoma has a list of oncologists who are melanoma specialists. Where you find the mel spec oncs, you'll also find surgical oncologists and dermatologists who, also, specialize in melanoma.

But I'm going to level with you, I'm mad enough to spit nails. When something in the world of melanoma hits my desk twice in two days, that means it's happening A LOT, far more often than it should. Twice, in two days, so far this week and today is just Wednesday, I've heard from two different people with two different daddies in two different places...BOTH daddies have recently been diagnosed with stage 4 melanoma, one already has brain mets and the other man's has spread to his abdomen. Both men, upon further conversation with their children who contacted me, are in the hands of doctors who are not melanoma specialists! One is in the hands of an internist and an hematologist! The other is in the hands of a radiologist! I sent them the above link to Aim's list and you know what? And I am still livid over this of these men is 45 (FORTY-FIVE) MINUTES away from a cancer center with a melanoma specialist...and the doctor he has entrusted his life and fight with has not only NOT told him this and NOT referred him, but his doctor has told him there is nothing left to do and sent him home to die.

I'm sure I'm not the only person who sees something seriously wrong with this picture!

By now, fellow melahomey, you see something wrong with this picture, too. So, now, let me talk with you. If you are being treated in a small, local hospital, more than likely you are not in the hands of a melanoma specialist. They are, generally, found in the much larger facilities with large cancer centers...but keep in mind...not ALL hospitals with "cancer centers" have a melanoma specialist on staff. Ask. Ask your doctor if he or she is a specialist in melanoma. Check Aim's list. Look up your hospital's website, search for your doctor and see what his or her listed specialty is. There may be a list of areas. If "melanoma" is not specifically listed, you are not in the hands of a specialist. It's just that simple. And you need to be. Your life, or the life of a loved one, depends on it.

If your doctor cannot get you or a loved one what you need, you are not where you need to be.

If your doctor sends you or a loved one home to die and says there's nothing left to do, you may not be where you need to be. True, this time will come to all of us, BUT, if you've been "given months" to live, live them getting a second opinion!

If you've been told your melanoma tumor(s) are in "impossible to reach" places and your surgeon won't try and your onc says there's nothing to do but wait to die, you may not be where you need to be. If that "impossible" surgery is what's standing between your life and your death, ask yourself, "What will I lose and what will I gain if I seek out a melanoma specialist who WILL operate?" Even if a melanoma specialist is the one who will not try the procedure...there is one, somewhere, who WILL! If your melanoma has reached this point, you're going to die if you don't seek out a surgeon who will take that chance...if you WANT that chance. Yes, you may still die from the surgery. But you know what? You might NOT! You might just get several more YEARS! I know people that can testify to that. It's up to you though, what you're willing to risk and try and what you aren't. Just know that you DO have options! You CAN get a second opinion. You just might add years to your life.

All right. I've said what I need to say. Don't make me come down there and say it again (insert annoying smiley face here).

I'll say it as often as I need to. Really.

I don't understand the doctor's mentality that will not refer a patient with melanoma to a melanoma specialist. That's the first thing that should be done immediately upon diagnosis. If I ruled Melanoma World, it would happen and insurance companies would insist on it and so would the AMA, WHO, and any other health organization with some clout. I was handed to Duke on a silver platter. If I had NOT been, I would be among the countless melahomies who don't know to ask about melanoma specialists. I know I would be. That scares me. That's a position no one should be in.

If you're reading this and you honestly don't know if you or your loved one with melanoma is in the hands of a specialist, follow the advice above. Send the link to this post to the people you know with melanoma and say, "Please read and make sure you're where you need to be."

I'm getting off my soapbox now. I know you're grateful!

Follow my advice and I'll be grateful, too!


Tuesday, March 12, 2013

Yesterday's "Visit" With Dr. Tyler

Yesterday, as I write, I had my six month check-up with Dr. Douglas Tyler at Duke Cancer Center. He's my surgical oncologist and director of Duke's Melanoma Group. I see him and my dermatologist twice a year. Since I opted not to do Interferon in 2008, I don't see an oncologist, though one does have my file and I have met with her a couple of times. She's there if I ever need her.

Since I've gotten into the habit of writing about my appointments, let me share the highlight of this one. No, it wasn't being surrounded by people carrying on "private" conversations on their phones in the waiting area. While an inane soap opera droned in the background. I got a glimpse of what hell must be like. And it wasn't the cute little sign on the back of the door in my own little room in the back: "Dear Guest, When you are finished with your visit, please leave the door open when you leave. Thank you." Or something very similar. I distinctly remember the "guest" and "visit" parts. What's next? Changing the name of the place to "Duke Cancer Hilton"?

No. The highlight was asking him a couple of questions and getting a new prayer focus as well as the conversation kicking a few of my brains cells into gear.

A little background. I've chosen to control my melanoma with surgery only. So far, in almost five years, I've had my melanoma mole removed, and two surgeries to remove all 27 lymph nodes under my left arm (during the first of those surgeries Dr. Tyler also removed more of the area where my mole was). Besides quickly developing lymphedema in that arm, that's all I've done. No recurrences. No Interferon. And because I know how I react to even "simple" drugs like aspirin, I've already chosen to control any recurrences, should I have them, with surgery only. If, and only if, surgery cannot reach a met, and is not an option, will I consider whatever drug options I'm given. Blessedly, there are more options than in 2008 and they're showing great promise. But, even then, they don't work for everyone.

I have a Facebook friend, who is stage 4 and his melanoma spread to his brain. He has been NED (no evidence of disease) for four years now by controlling his with surgery only. I told him I would ask my surgeon if people like us have ever been studied...people who chose the "surgery only" route.

So, yesterday, I asked and I told Dr. Tyler about my friend. He and his nurse, Karen, both beamed at hearing about this guy who has been NED 4 years with brain mets. And he told me "surgery only" has been the control arm of some trials.

But, as our conversation progressed, he told me something I found interesting. He said that there are some people who do well with this disease no matter what they do, like me and my friend. And there are some people that don't do well with this disease no matter what they do. He said we need to find out why some people do well, no matter what, and some people don't.

As my brain later thought back on that, I thought about Braf, for example. We're either positive for the Braf mutation or negative. People who are positive are considered to be good candidates for Zelboraf while people who are negative, aren't. But not everyone who takes Zelboraf will see positive results. It will be great for some, but not for others. Why? Same goes for any option, including "surgery only." No matter what is chosen, some will do great and some won't. We need to find out what the common denominators are.

My brain began to think about my own family history with this disease. I'm third generation. My maternal granddaddy had many melanomas removed in his lifetime. I first started hearing the word in the late 1960s I guess. Maybe the early '70s. He died in January 1990 in his 80s. He did well with his melanoma. In the 60s he lost six feet of his colon to cancer and I've wondered was that "colon cancer" or melanoma that had spread. He never did any chemo. He died of lung cancer and I've wondered "lung cancer" or "melanoma"? Whichever, he still did well with his melanoma. After I was diagnosed, my mama mentioned one time that she had a melanoma removed, but I don't know when that was. She's 82 and has done well with her melanoma. Have I done well because of a genetic propensity to do well with melanoma? Would I do equally well if I had another type of cancer? Other family members on mama's side have died quick deaths from other cancers. Were they missing a gene that I was fortunate enough to get?

I hope a seed was either planted or watered with Dr. Tyler yesterday. I know I'm praying now, not just for a cure and for more and better treatment options until that cure is found, but I'm also praying they find out why some of us do well, no matter what we do, and some of us don't. They can set the criteria for "well" and "not well" and get busy looking at patient histories around the world. If I meet those criteria, I'll be glad to be studied. I bet we all would if it would move us closer to the Promised Land of a cure.

Every choice we make on this road is made after much prayer, study, reflection, deciding what we can do and cannot do, what we're willing to try and what we aren't willing to try. No matter what we choose, there are NO guarantees. None. None of us know when we start out if we'll do well or if we'll have to keep trying every option that comes our way.

All I know is that, since I was diagnosed stage 3b in July 2008, many people at lesser stages but diagnosed at the same time or since then, have died. Why haven't I not even had a recurrence? I'm not complaining, mind you. I'm grateful. But I'm curious. And is there something in me that can point to something some people are missing in their DNA or lifestyle or both?

Do I share more than a common battle plan with my stage 4, surgery only friend? I have friends who have done intense drug therapies and have been NED years. Do we all share something besides a common disease? Is there a common thread that ties us together that should be studied? I'm beginning to think so.

Maybe my melanoma specialist surgical oncologist researcher is too.

Praying so.



Friday, March 8, 2013

Melanoma Is Not A "Second Class" Roll Your Eyes Cancer

I'm sensing anger in melaland about how many people in society perceive this cancer. Our cancer. And we could probably shake it off it it were only "society" rolling their eyes when we say "melanoma" and if it were only "society" saying cancer...and if it were only "society" making us feel guilty for having a lesser cancer while people with real cancer suffer.

But it's not "society" that's our biggest problem. It's the people we know. Our family and friends, colleagues, acquaintances, that can be our biggest obstacles and problems.

Last night, as I write, I posted this on Melanoma Prayer Center and on my personal Facebook page:
"OH, how I wish we could remove melanoma from the "skin cancer" category! It doesn't fit. Melanoma doesn't need skin to begin, grow, or spread. It can begin in the eye, mouth, internal organs, and those places where the sun don't shine. In people of ALL skin tones and ALL ages, even children. Sun history and tanning bed history aren't the only contributing factors...though they are HUGE ones. Annnnd stages 0 and 1 can come back stage 4..and that will be melanoma (horrible tumors) that has spread to brain, lungs, liver, bones, etc. It's not the same as "brain cancer," etc. THAT is NOT "just skin cancer!" Especially not to the 77,000 people who will be diagnosed this year and their families."

Well, my brain got to wondering, as it tends to do, what the world wide figures for melanoma are. That's when I found the newest figures from the American Academy of Dermatology for 2013 and they were very different from the ones I gave here (the last ones I had seen). 

Soooo.....I made this graphic so people could easily share, and keep, the newest figures:
That first status that with the older number, so far, has been shared 65 times (that's A LOT for MPC)!

One person commented, "I used to feel guilty for being so scared, feeling so vulnerable and only having had "skin cancer". Thank you for this post." Three people, besides me, agreed. Again, that's a lot for MPC! This person touched a nerve!

Other comments: "Most people believe it's a spot on the skin you remove it no big deal. Tell that to My Momma who has two forms now from one small mole on her back which was removed. Now it's bronchial tubes lungs left femur n small spot on her brain."

"Those people who think its nothing haven't been in my shoes the last 4 years of my life. I've had to put off having a family because it can spread to an unborn baby. I can't wait until I go into remission."

"I completely agree. My sister has melanoma and it has metastasized to her back and brain. I was talking to a co-worker about her cancer when she asked what kind of cancer my sister had. When I said melanoma, she said "oh, just skin cancer". Not even close. It drives me crazy that it gets swept away like that."

"I feel all of you, when I was diagnosed that's what I said, even though I knew it was no joke, I felt bad for feeling bad when my step mom is battling terminal breast cancer and I just had "skin cancer" but this beast is beyond just skin cancer! That's why we need to get the word out there about it because this is some serious aggressive evil stuff! Anyways get scan results tomorrow then begin my long harsh battle against this SOB! Prayers to all my melanomies!! Stay positive and keep fighting!!"

The graphic I created has been shared 64 times so far. 

I've read, in many melanoma-related places, of people being made to feel guilty of having melanoma, people not understanding. The comments. The looks. I wrote my last post about helping melahomies escape from the melanoma underground

Something's got to give. It has to. And it will.

One, word to me melahomes: YOU know what you've got and live with even if nobody else does. You have done nothing to feel guilty about. You do not have a lesser if there even is such a have melanoma...the most unpredictable, costliest, sneakiest, vicious, numbers rising cancer there is. Even if other people don't get it, YOU DO. Don't let anybody make you feel guilty, bad, or anything else. Don't let their ignorance pull you down even further. That's their deadly problem. Not yours. You know what you live with, so do the people you share a house with, so does the medical community, and so do insurance companies.

Two, a word to people who hear "melanoma" and roll their eyes and think cancer.  No. That's deadly ignorance and arrogance. Better brush up on what this cancer REALLY is, because what it REALLY is is the fastest growing rate-of-diagnosis-wise of ALL cancers and in NINE short years, 2022, is on track for being THE MOST DIAGNOSED OF ALL cancers. Pink will eat Black's dust.

Right now, right this minute, as you read this, melanoma is the most common form of cancer for young adults 25-29 years old and the second most common form of cancer for young people 15-29 years old. (Those stats include ALL cancers and not skin cancer alone).

And, 1 in 50 men and women will be diagnosed with melanoma of the skin during their lifetime. 

The next time you're in a crowd of at least 50 people... if you don't have melanoma and don't know what it is (and no it's not even close to "skin cancer" a blog site search)...consider one of those 50 will, statistically, develop melanoma before they die. Heck, it might just be what kills them. Then consider YOU'RE in that crowd. It could be YOU.

Trust me. When you hear that'll stop rolling your eyes. 

You'll get it.

Because you've got it.


Saturday, March 2, 2013

Digging Out Of The Melanoma Underground

As I write, I've been literally home-bound all week because of laryngitis and fever courtesy of infected sinuses. To say I'm ready to make a break and escape would be a gross understatement! Because I still can't quite make the break I would like to make, I'll write about making another kind of break and see if I can't, in the process, help some people escape from the Melanoma Underground! Sounds ominous and sinister, huh? It is.

I logged onto Facebook this morning and went to Melanoma Prayer Center, which I write and admin and there was this perfectly lovely and uplifting post on the timeline a woman had left. I blush just thinking about it, but there's one part I want to share here:

"I am a member of a surviving cancer support group. I dearly love everyone there. The fellowship, support and bible studies are truly uplifting & inspiring (the last one was on Hope). But I have never met another person living with melanoma. Now that I have found your site, I no longer feel so isolated and all alone like the only person on earth with the trials & fears that we face.

When I tell anyone outside of my support group that I have been battling melanoma I get a flipid "it's only skin cancer" response, so I just smile & say no more. Am I the only person who gets that? Or is that a common response?....Thank you for bringing me out of isolation."

Here is but a part of my response, but it's the part that inspired this post:

"You're not alone. Far from it. There will be over 76,000 melanoma diagnoses in the USA alone this year, so add them to all the previous years diagnoses, and there are millions of people, including family members, affected by melanoma. All of us, including those millions yet to find us, have been given that reaction and it probably serves to drive us underground and hide as if we have a "lesser" cancer when in fact, as you know, we have the most unpredictable and vicious. That's one reason why I want, so desperately, to refer to melanoma as "melanoma" and remove it from the "skin cancer"'s so much more. We've got to come out of isolation and realize we aren't alone and we need each other. The world needs us. Really."

Now...for a refresher post on skin cancer and melanoma. There are others. Do a blog site search. I'm moving on.

I can't do a thing in the world about people's ignorance about melanoma except keep putting stuff out there trying to educate and hope someone pays attention. I'm waging a lonely war to get melanoma removed from the skin cancer category and I have to accept that as well and keep plugging away until those particular forces grow.

What I CAN do something about, though, is this blasted Melanoma Underground that the ignorance of others is driving people into. I cannot prevent ignorant and hurtful remarks. I cannot remove the stinger from them. But I can be a Who that Horton's toting on a small flower and holler, "We're Here! We're Here!" I can encourage the voices of my fellow melanoma road travelers to join in the shout. And many already ARE shouting at the top of their lungs.

There are literally millions of people and families on the face of this earth affected by melanoma. MILLIONS! That's a huge population! There's almost a billion people on Facebook and that number grows everyday. There ARE billions of people, worldwide, online who, therefore, have access to the melanoma sites and blogs. There HAS to be a huge number of these online people and Facebook users who are dealing with melanoma. There HAS to be!

Where are they though? My guess? Underground. Isolated. Thinking they're all alone in this. They tell someone they have "melanoma," get rolled eyes and an "oh. skin cancer?", and that's all it takes for them to realize no one gets it or cares or understands or will even try to so why bother. People do not know that melanoma is so far from "skin cancer" that it's not even funny and that it's the most unpredictable and vicious cancer there is. People don't know about the tumors and that it can spread, very quickly at any stage, into the brain, lungs, liver, bone, blood, any organ it chooses. And those spreads ARE NOT "brain cancer" or "lung cancer"'s melanoma that has spread and is killing.

Given the statistics, every town on the face of this earth probably has at least one person/family dealing with this or someone who knows someone.

Please...when you hear of someone with melanoma, show understanding and compassion even if you don't know beans about melanoma and point them to the online melanoma community.

Please, if you or someone in your family or a friend has melanoma, any stage, find me and others on Facebook. Even if you do not have a Facebook account and don't think you want one for support with this disease if for no other reason. Connect with us through our blogs. I have a growing list of us bloggers.

Just because ignorance and arrogance on the part of others may have driven you into the depths of the Melanoma Underground, doesn't mean you have to stay there.

Dig out. I'm handing you the shovel, but you've got to use it.

There's a whole, growing community waiting to embrace you.

You'll be glad you did.