Soapbox time. And I've got a healthy dose of attirude
flowing. Uh-oh. Time to vent, preach, and have at it. Watch out. And
guess what? This is directed at adults. Who ought to know better.
What
am I up in arms about? We've got bullying happening in the
melanoma community. It's happening in cyberspace as well as in the real life, out on the streets life, of warriors. The cyber-bullying seems to mostly come from within the melanoma community. The real-life out-on-the-streets bullying seems to mostly come from people who see a warrior, particularly stage 4 and don't believe they're sick or pass other false judgements.
The first type of cyber-bullying is carried out by adults who claim to have melanoma themselves.
The cases I'm aware of are all directed at stage 4 warriors who are
actively fighting active disease. These men and women are truly in the
fight for their very lives and should be getting respect, compassion,
support, and prayers from those of us who also have melanoma. They don't
need someone coming at them, usually on Facebook as this format lends itself to this type of behavior, and harassing them. Whether in private message or on their wall, these bullies torment warriors by telling them they don't
have melanoma and are faking it. They are cruel and vicious in their
attacks and can even try and make their attacks sound like "jokes." For
some reason, bullies seem to gravitate to the warriors who are on
grueling treatments and are already tired and sick. Like other types of
bullies, these people look for the weakest and pick on them in an effort
to make themselves look like big shots; like "some body." I wish I
could explain their behavior in a way that makes sense. It's hard to
"make sense" out of cruelty. They also claim to be "people of faith."
That's
one reason I'm bringing my soapbox out of retirement. I'm a person of
faith, who is stage 3b melanoma, and I get the privilege of being part
of the lives of many warriors of all stages and that includes stage 4. I
stand in awe of these men and women and I'll be damned if others are
going to harass them to the point of driving them away from the support
they need. This problem has got to be exposed and fought. Our stage 4
friends have got to know they've got friends and a community that
supports them and will not tolerate the bullies among us.
This, in red, is added on September 21, 2012. I'm not a happy camper! I've become aware of YET another type of cyber-bullying, again usually against stage 4 warriors and this comes from people who do NOT have melanoma. Do not stalk family or friends and go from page to page trying to find out details about someone's illness. If your family or friend isn't telling you something...there is a reason. Do not use other people's pages to find out what you won't learn by picking up a phone. Facebook is meant for many things...it is NOT meant to be a place of meanness, vindictiveness, and outright lies. I understand some people have a messed up sense of reality, but again, if you know someone and they are NOT talking to you or otherwise giving you information, there's a reason. Don't air your business online, don't stalk, don't and create trouble by trying to turn people against each other or by trying to drive people from Facebook or from other means of support. And, do not think other people are stupid or naive. We may, or may not, catch on right away. But we WILL catch on. Don't mess with warriors. We stand together and I stand with stage 4. Don't mess with them.
Cyber-bullies in Melaland, you are on notice.
The
second type of cyber-bullying I'm aware of is the type that comes when a
warrior dies and their family mourns and shares on Facebook. They are
entitled to their grief and entitled to express it as best suits them.
If a person doesn't like what they share, feels they're too morbid or
depressing...get off their friends list. Block their posts. Ignore them.
They are entitled to share their pain on their own page! NO ONE is
entitled to make comments that pull them down or belittle their pain. NO
ONE is entitled to tell them "for their own good" that they need to get
a grip. NO ONE is entitled to get nasty with them about their own
posts. Again these people can often be "people of faith." They claim to
be people who "care" and only have their grief-stricken friend's "best
interests at heart". What they are accomplishing is intensifying pain
and causing the mourner to question their own grief.
As
a person of faith who's a pastor who is Hospice trained and
pastoral-care trained who has stage 3b melanoma and a family who may one
day grieve me...this type of cyber-bullying must stop. It's mean,
unwarranted, and one day these bullies may find themselves in a similar
situation and they will want some compassion not criticism.
Cyber-bullies
in the melanoma community, I'm angry and this behavior will not be
tolerated. I'm tired of reading posts by friends who have been
recipients of bullying. People of faith don't act like this. People who
really have melanoma themselves don't act like this against fellow
warriors and/or their families. People of character and integrity don't
act like this period. Especially towards people who are sick and
fighting to live.
I write and admin both Melanoma
Prayer Center and Melanoma Grief Chapel on Facebook. I choose to stand
with my own and lift them up. Nobody better mess with them.
This post you are reading is actually the second post I've done today about this topic. After I posted the first one about cyber-bullying on Melanoma Prayer Center I heard from two people pretty quickly. The first is the big sister of a warrior and the second is the mother of a deceased warrior. What they each wrote pertains to bullying aimed at their loved ones in real life...not in cyberspace.
From the big sister: "It happens in real life too!
My brother is a stage IV warrior, but he's encountered people in our
hometown who don't believe he has cancer 1) because they equate cancer
to chemo and it's futile to explain to them the unlessness of chemo on
stage IV brain mets and they see his red face and say, "well if you have
skin cancer from the sun, why are you getting sunburned?" They're they
lucky ones who haven't had to experience radiation burns! 2) He doesn't
look sick...until he takes off his shirt and you see the Frankenstein
like scars and swelling that are left behind after stripping lymph nodes
or he takes off his hat and you see where they cut into his brain! And
even though he's 35 now, just like when he was 5 and getting bullied on
the school bus, big sister couldn't hold her tongue. Everyone in
Walgreens that day will remember me FOR SURE! In the Army, every
warrior has a battle buddy..the one who's got your back, no matter what!
In this war, I'M his battle buddy and I've got his back. I'll fight
melanoma, ignorance and bullies for him, even though he's bigger than
me, because I'm his big sister and they're all going to have to come
through ME FIRST! And I'm not as nice as he is!"
From the mother: " My daughter endured a lot of
bullying from adults with her Melanoma, but the worst one was from
someone who wrote her a letter and told her that it was because she must
have done something wrong and God was punishing her. Oh, the tears
that others can cause someone is cruel. My daughter didn't "look" sick
until the last three weeks she was alive and people claimed she was
faking sick. People should never judge what another is going through -
or judge at all for that matter as there is only one judge and we will
see him someday in Heaven."
Bullying anywhere is wrong. It is hurtful. But that's the bullies intent. Often when we think of "bullying" we think of kids and teens doing it; cruel teasing, maybe some physical contact. It makes the news and youtube. The consequences of bullying have proven horrendous. Nobody should ever be bullied, particularly someone fighting cancer. And adults inflicting this kind of pain?!
People with melanoma, even advanced stage 4, do not look like other cancer patients. They don't "look sick." That's part of the nature of the beast. All the horrendous tumors usually aren't where the general public can see them. But they're there.
This behavior must stop. Perhaps we need to step up our awareness campaigns to include what we "look like" at each stage. Maybe people need to see we look like everybody else and in many ways we are like everybody else, but in other ways we aren't. Looks can be deceiving. Sickness doesn't always look sick.
Because
I'm a person of faith, I'm going to practice what I preach. I'm
going to pray for those who engage in all kinds of bullying and ask others to
pray too. I ask others to expose the bullies among us and when you see
bullying at work, take appropriate steps to stop it. Report cyber-bullies on Facebook to
Facebook. Send them a message to stop it. Stand with the person who has
been attacked. Be a "big sister" or "mama bear" to a warrior who needs you, whether on the street or online.
Warriors fighting to live and those who
grieve shouldn't be driven away from Facebook or anywhere else. Those
who bully them should. Warriors shouldn't be driven into their houses or scared to check their mail either.
Bullies of people with melanoma, be on notice.
And, remember, God is watching and I guarantee He's not pleased or
laughing. Keep that in mind. Change your ways.
We'll all be grateful!
Monday, April 30, 2012
Cyber-bullying In Melaland
Soapbox time. And I've got a healthy dose of attirude flowing. Uh-oh. Time to vent, preach, and have at it. Watch out. And guess what? This is directed at adults. Who ought to know better.
What am I up in arms about? We've got cyber-bullying happening in the melanoma community of two kinds. If there are other types of cyber-bullying going on, I haven't come across them yet.
Type one: is carried out by adults who claim to have melanoma themselves. The cases I'm aware of are all directed at stage 4 warriors who are actively fighting active disease. These men and women are truly in the fight for their very lives and should be getting respect, compassion, support, and prayers from those of us who also have melanoma. They don't need someone coming at them, usually on Facebook as this format lends itself to this type of behavior, and harassing them. Whether in private message or on their wall, these bullies torment warriors by telling them they don't have melanoma and are faking it. They are cruel and vicious in their attacks and can even try and make their attacks sound like "jokes." For some reason, bullies seem to gravitate to the warriors who are on grueling treatments and are already tired and sick. Like other types of bullies, these people look for the weakest and pick on them in an effort to make themselves look like big shots; like "some body." I wish I could explain their behavior in a way that makes sense. It's hard to "make sense" out of cruelty. They also claim to be "people of faith."
That's one reason I'm bringing my soapbox out of retirement. I'm a person of faith, who is stage 3b melanoma, and I get the privilege of being part of the lives of many warriors of all stages and that includes stage 4. I stand in awe of these men and women and I'll be damned if others are going to harass them to the point of driving them away from the support they need. This problem has got to be exposed and fought. Our stage 4 friends have got to know they've got friends and a community that supports them and will not tolerate the bullies among us.
Cyber-bullies in Melaland, you are on notice.
The second type of cyber-bullying I'm aware of is the type that comes when a warrior dies and their family mourns and shares on Facebook. They are entitled to their grief and entitled to express it as best suits them. If a person doesn't like what they share, feels they're too morbid or depressing...get off their friends list. Block their posts. Ignore them. They are entitled to share their pain on their own page! NO ONE is entitled to make comments that pull them down or belittle their pain. NO ONE is entitled to tell them "for their own good" that they need to get a grip. NO ONE is entitled to get nasty with them about their own posts. Again these people can often be "people of faith." They claim to be people who "care" and only have their grief-stricken friend's "best interests at heart". What they are accomplishing is intensifying pain and causing the mourner to question their own grief.
As a person of faith who's a pastor who is Hospice trained and pastoral-care trained who has stage 3b melanoma and a family who may one day grieve me...this type of cyber-bullying must stop. It's mean, unwarranted, and one day these bullies may find themselves in a similar situation and they will want some compassion not criticism.
Cyber-bullies in the melanoma community, I'm angry and this behavior will not be tolerated. I'm tired of reading posts by friends who have been recipients of bullying. People of faith don't act like this. People who really have melanoma themselves don't act like this against fellow warriors and/or their families. People of character and integrity don't act like this period. Especially towards people who are sick and fighting to live.
I write and admin both Melanoma Prayer Center and Melanoma Grief Chapel on Facebook. I choose to stand with my own and lift them up. Nobody better mess with them.
Because I am, also, a person of faith, I'm going to practice what I preach. I'm going to pray for those who engage in cyber-bullying and ask others to pray too. I ask others to expose the bullies among us and when you see bullying at work, take appropriate steps to stop it. Report them to Facebook. Send them a message to stop it. Stand with the person who has been attacked.
Warriors fighting to live and those who grieve shouldn't be driven away from Facebook or anywhere else. Those who bully them should.
Cyber-bullies, be on notice. And, remember, God is watching and I guarantee He's not pleased or laughing. Keep that in mind. Change your ways.
We'll all be grateful!
What am I up in arms about? We've got cyber-bullying happening in the melanoma community of two kinds. If there are other types of cyber-bullying going on, I haven't come across them yet.
Type one: is carried out by adults who claim to have melanoma themselves. The cases I'm aware of are all directed at stage 4 warriors who are actively fighting active disease. These men and women are truly in the fight for their very lives and should be getting respect, compassion, support, and prayers from those of us who also have melanoma. They don't need someone coming at them, usually on Facebook as this format lends itself to this type of behavior, and harassing them. Whether in private message or on their wall, these bullies torment warriors by telling them they don't have melanoma and are faking it. They are cruel and vicious in their attacks and can even try and make their attacks sound like "jokes." For some reason, bullies seem to gravitate to the warriors who are on grueling treatments and are already tired and sick. Like other types of bullies, these people look for the weakest and pick on them in an effort to make themselves look like big shots; like "some body." I wish I could explain their behavior in a way that makes sense. It's hard to "make sense" out of cruelty. They also claim to be "people of faith."
That's one reason I'm bringing my soapbox out of retirement. I'm a person of faith, who is stage 3b melanoma, and I get the privilege of being part of the lives of many warriors of all stages and that includes stage 4. I stand in awe of these men and women and I'll be damned if others are going to harass them to the point of driving them away from the support they need. This problem has got to be exposed and fought. Our stage 4 friends have got to know they've got friends and a community that supports them and will not tolerate the bullies among us.
Cyber-bullies in Melaland, you are on notice.
The second type of cyber-bullying I'm aware of is the type that comes when a warrior dies and their family mourns and shares on Facebook. They are entitled to their grief and entitled to express it as best suits them. If a person doesn't like what they share, feels they're too morbid or depressing...get off their friends list. Block their posts. Ignore them. They are entitled to share their pain on their own page! NO ONE is entitled to make comments that pull them down or belittle their pain. NO ONE is entitled to tell them "for their own good" that they need to get a grip. NO ONE is entitled to get nasty with them about their own posts. Again these people can often be "people of faith." They claim to be people who "care" and only have their grief-stricken friend's "best interests at heart". What they are accomplishing is intensifying pain and causing the mourner to question their own grief.
As a person of faith who's a pastor who is Hospice trained and pastoral-care trained who has stage 3b melanoma and a family who may one day grieve me...this type of cyber-bullying must stop. It's mean, unwarranted, and one day these bullies may find themselves in a similar situation and they will want some compassion not criticism.
Cyber-bullies in the melanoma community, I'm angry and this behavior will not be tolerated. I'm tired of reading posts by friends who have been recipients of bullying. People of faith don't act like this. People who really have melanoma themselves don't act like this against fellow warriors and/or their families. People of character and integrity don't act like this period. Especially towards people who are sick and fighting to live.
I write and admin both Melanoma Prayer Center and Melanoma Grief Chapel on Facebook. I choose to stand with my own and lift them up. Nobody better mess with them.
Because I am, also, a person of faith, I'm going to practice what I preach. I'm going to pray for those who engage in cyber-bullying and ask others to pray too. I ask others to expose the bullies among us and when you see bullying at work, take appropriate steps to stop it. Report them to Facebook. Send them a message to stop it. Stand with the person who has been attacked.
Warriors fighting to live and those who grieve shouldn't be driven away from Facebook or anywhere else. Those who bully them should.
Cyber-bullies, be on notice. And, remember, God is watching and I guarantee He's not pleased or laughing. Keep that in mind. Change your ways.
We'll all be grateful!
Saturday, April 28, 2012
The Great Melanoma-Crack Showdown of 2008
It was high noon as Melanoma and Crack faced each other in the town square and around the dinner table. It was high noon every day, all day, in 2008. Melanoma wore my face and Crack wore my brother's. It's just the two of us siblings and our parents lived that year not knowing what would happen when to either of us. Would we make it out dead or alive? Would Melanoma and Crack both die or would one be left standing? Looking back I don't know how my parents did it. Well, yes I do, too. They didn't do it alone. Faith and Hope came from out of the watching crowd and stood alongside them.
Though my melanoma journey began in earnest that July, it really began around the beginning of 2008. I write about the dramatic changes in my melamole that started in March, but I began noticing more subtle changes earlier than that. The going from dark brown to black. The uneven edges of the double, layered mole filling out into a big circle before it bubbled. I watched, grew increasingly worried, prayed fervently, covered it up as best I could, but durn if some people still didn't notice that I had a "tick" on my arm. It caught Mama and Daddy's eye occasionally and I think they knew. I know they didn't like what they saw. But they knew what they knew about my brother and he had a clear "diagnosis."
He was a full-fledged crack addict. I was 48 and he was 46. He hated drugs. Had no use for people who did any of them. And yet life's circumstances piled up and piled up and in his mid-40s he found himself in the "right" place with the "right" people who knew "just what" would ease his pain. And it did. Like gangbusters. I don't make excuses for him and he makes none for himself. The life that he began living after that first night is a life none of us ever saw coming for him. But it came nonetheless. And 2008 brought the very worst of it.
People think of a crack addict or see one and they see the surface. When the addiction first starts, they can keep a job, they can still manage money and home life. They still look and act like a functioning, responsible member of society. They aren't getting high every day and when they do get strung out it's often not so noticeable because they still aren't using very much at a time or often. But their appearance will start to change as will their attitude. They'll start borrowing money. A few dollars here and a few dollars there. In the beginning they may even pay it back. It won't be long though before they won't. They'll lose one job after another. It will take too long to get into everything that will happen, but let's say life goes downhill. Fast. And ugly. And it will turn violent. It will. See, that crack comes from somewhere. That's the part you won't see when you see a crack addict.
You won't see that they frequent places where they know they can score and you won't see the people they buy from. You won't see the hell their private life becomes. Not until it becomes public when they're arrested. That's going to happen. Crack addicts will build quite a criminal record. It may take a little time. But eventually the money will run out and so will people to borrow from. See, crack lives up to its reputation of taking away the pain. The first time it's used. After that, the user tries to get that feeling back...and can't. It becomes elusive and they will do anything to get it back. Anything. They begin to use more and more. All in an effort to kill that pain and feel good again. But the addiction has them. And it's not going to turn loose.
That doesn't mean the addict likes where they find themselves. My brother didn't. He came to despise it but didn't know how to get out. He kept our parents scared to death. He told us some of what was going on, but we didn't begin to learn the full depths he had sunk to until he went into recovery.
Court ordered recovery. It was that or prison; he was already in jail. God threw him a lifeline and he grabbed it. There were times he thought he was as good as dead in the crack world. And not from the drug itself but at the hands of the dealers. The crack world is a dangerous, violent, seedy world. That's its nature. For ALL addicts. The family won't have a clue, or a complete picture, of the double life their loved one is leading...but that double life is being led. I promise you. It just is.
And it was high noon, all day every day for our family. My parents had enough on their plates with him. They didn't need to add my cancer to the mix. But it was added. My Daddy's a retired dentist and still keeps up with everything medical. He knows the score. They both do. They know the dangers associated with just being put to sleep for surgery. They weren't ignorant about melanoma. They had lived enough years to see plenty of cancer up close and personal. Now as 2008 was drawing to a close, they had a daughter with stage 3b melanoma and a crack addicted son and it looked like neither would make it out alive.
Melanoma and Crack faced off. Weapons drawn. Cocked. And the "boom" that was heard was the voice of God calling into the showdown saying, "No! Not today! Melanoma and Crack put away your weapons. Disarm. There will be no death here today!"
Melanoma and Crack didn't go quietly into that good night. But there was no death in 2008. Four years later we are all still here. Not just surviving, but thriving. And our parents are both still here to see it and us.
We all live with something and usually we have a plate full with all sorts of things on it. Nobody "just" has melanoma on their plate. Or any cancer. And we don't "just" have the issues that come with it and neither do our families. We just don't. Life is like that.
While 2008 was a year, for my family, of intense fear, worry, dread, and anger. It was also a year of triumph and joy. It was also a year of coming together as family, determined to overcome odds that didn't seem overcome-able. It was a year of strength, faith, and fortitude. It was a year that we all held our breath, didn't know what was coming next, often didn't like what was next, but in the end, it was a year we all watched in silent awe. It was a year that Melanoma and Crack, BOTH, were told a Divine "No!" to and they listened. They had to.
When God speaks into our midst, our enemies have to listen. They may not slink quietly away but they have to bow to God's sovereignty and when God says "No!" He means "No!"
We don't know what the future holds. My brother, though he has completed his "recovery" and leads recovery groups himself, will always have that monkey on his back. He will always be a crack addict. And he knows it. Four years into my ten year statistic I'm still NED, but I'm also still stage 3b melanoma and I know exactly what that means.
The day may come, for either one of us or for both of us, when our enemies rear their ugly heads again and decide to test and see what God will say then. If that happens, God may or may not shout "No!" into the situation. He may choose to work in other ways. I've seen God work enough that I can handle that. I may not like how another showdown may end. I may not like the idea of another showdown or what it may look like before weapons are drawn and cocked again.
But I do know that God has the last word. He may shout "No!" at Melanoma and Crack again, but in that "No!" to them is a "Yes!" to me and my brother. He will always shout "Yes!" to me and my brother.
God always tells His children a divine "Yes!" in the face of their enemies. We may not hear it that way, if at all. But our enemies sure do.
And I am eternally grateful!
Though my melanoma journey began in earnest that July, it really began around the beginning of 2008. I write about the dramatic changes in my melamole that started in March, but I began noticing more subtle changes earlier than that. The going from dark brown to black. The uneven edges of the double, layered mole filling out into a big circle before it bubbled. I watched, grew increasingly worried, prayed fervently, covered it up as best I could, but durn if some people still didn't notice that I had a "tick" on my arm. It caught Mama and Daddy's eye occasionally and I think they knew. I know they didn't like what they saw. But they knew what they knew about my brother and he had a clear "diagnosis."
He was a full-fledged crack addict. I was 48 and he was 46. He hated drugs. Had no use for people who did any of them. And yet life's circumstances piled up and piled up and in his mid-40s he found himself in the "right" place with the "right" people who knew "just what" would ease his pain. And it did. Like gangbusters. I don't make excuses for him and he makes none for himself. The life that he began living after that first night is a life none of us ever saw coming for him. But it came nonetheless. And 2008 brought the very worst of it.
People think of a crack addict or see one and they see the surface. When the addiction first starts, they can keep a job, they can still manage money and home life. They still look and act like a functioning, responsible member of society. They aren't getting high every day and when they do get strung out it's often not so noticeable because they still aren't using very much at a time or often. But their appearance will start to change as will their attitude. They'll start borrowing money. A few dollars here and a few dollars there. In the beginning they may even pay it back. It won't be long though before they won't. They'll lose one job after another. It will take too long to get into everything that will happen, but let's say life goes downhill. Fast. And ugly. And it will turn violent. It will. See, that crack comes from somewhere. That's the part you won't see when you see a crack addict.
You won't see that they frequent places where they know they can score and you won't see the people they buy from. You won't see the hell their private life becomes. Not until it becomes public when they're arrested. That's going to happen. Crack addicts will build quite a criminal record. It may take a little time. But eventually the money will run out and so will people to borrow from. See, crack lives up to its reputation of taking away the pain. The first time it's used. After that, the user tries to get that feeling back...and can't. It becomes elusive and they will do anything to get it back. Anything. They begin to use more and more. All in an effort to kill that pain and feel good again. But the addiction has them. And it's not going to turn loose.
That doesn't mean the addict likes where they find themselves. My brother didn't. He came to despise it but didn't know how to get out. He kept our parents scared to death. He told us some of what was going on, but we didn't begin to learn the full depths he had sunk to until he went into recovery.
Court ordered recovery. It was that or prison; he was already in jail. God threw him a lifeline and he grabbed it. There were times he thought he was as good as dead in the crack world. And not from the drug itself but at the hands of the dealers. The crack world is a dangerous, violent, seedy world. That's its nature. For ALL addicts. The family won't have a clue, or a complete picture, of the double life their loved one is leading...but that double life is being led. I promise you. It just is.
And it was high noon, all day every day for our family. My parents had enough on their plates with him. They didn't need to add my cancer to the mix. But it was added. My Daddy's a retired dentist and still keeps up with everything medical. He knows the score. They both do. They know the dangers associated with just being put to sleep for surgery. They weren't ignorant about melanoma. They had lived enough years to see plenty of cancer up close and personal. Now as 2008 was drawing to a close, they had a daughter with stage 3b melanoma and a crack addicted son and it looked like neither would make it out alive.
Melanoma and Crack faced off. Weapons drawn. Cocked. And the "boom" that was heard was the voice of God calling into the showdown saying, "No! Not today! Melanoma and Crack put away your weapons. Disarm. There will be no death here today!"
Melanoma and Crack didn't go quietly into that good night. But there was no death in 2008. Four years later we are all still here. Not just surviving, but thriving. And our parents are both still here to see it and us.
We all live with something and usually we have a plate full with all sorts of things on it. Nobody "just" has melanoma on their plate. Or any cancer. And we don't "just" have the issues that come with it and neither do our families. We just don't. Life is like that.
While 2008 was a year, for my family, of intense fear, worry, dread, and anger. It was also a year of triumph and joy. It was also a year of coming together as family, determined to overcome odds that didn't seem overcome-able. It was a year of strength, faith, and fortitude. It was a year that we all held our breath, didn't know what was coming next, often didn't like what was next, but in the end, it was a year we all watched in silent awe. It was a year that Melanoma and Crack, BOTH, were told a Divine "No!" to and they listened. They had to.
When God speaks into our midst, our enemies have to listen. They may not slink quietly away but they have to bow to God's sovereignty and when God says "No!" He means "No!"
We don't know what the future holds. My brother, though he has completed his "recovery" and leads recovery groups himself, will always have that monkey on his back. He will always be a crack addict. And he knows it. Four years into my ten year statistic I'm still NED, but I'm also still stage 3b melanoma and I know exactly what that means.
The day may come, for either one of us or for both of us, when our enemies rear their ugly heads again and decide to test and see what God will say then. If that happens, God may or may not shout "No!" into the situation. He may choose to work in other ways. I've seen God work enough that I can handle that. I may not like how another showdown may end. I may not like the idea of another showdown or what it may look like before weapons are drawn and cocked again.
But I do know that God has the last word. He may shout "No!" at Melanoma and Crack again, but in that "No!" to them is a "Yes!" to me and my brother. He will always shout "Yes!" to me and my brother.
God always tells His children a divine "Yes!" in the face of their enemies. We may not hear it that way, if at all. But our enemies sure do.
And I am eternally grateful!
Friday, April 27, 2012
Heartbreak and Heart-healing In Hotel Melanoma
It starts as a ripple and it picks up speed as it rolls along.
We get our diagnosis and life is a whirlwind. Of the hurricane variety. The emotions become overwhelming. We drown in a sea of statistics and knowledge about this disease that we now have and before our diagnosis thought was just skin cancer. No big deal. Then we find out it is a big deal. It's not just skin cancer. It's not just cancer. And we learn just how big and scary a freaking deal it is. Our family learns with us.
We've checked into Hotel Melanoma and despite what the song says, we can leave. But we all know what that means. Far too many do leave. Often far too young. And far too horribly. And that never leaves our minds even though we get really good at acting like it does.
And we get angry and we get fearful. We get determined and dig in our heels. We gather together to ask the Lord's blessing and wonder where it is. We circle our wagons around the suffering, but often it seems like there's more suffering than there are wagons.
And so it is that there is heartbreak in Hotel Melanoma. It begins with our suspicions before our diagnosis if we're "lucky" enough to have them. Many people are thrown into this completely blindsided. OK. I take that back. We're all thrown in here completely blindsided, even if we do have suspicious places because we just don't think it can happen to us. There is heartbreak as we tell our families and friends and have to repeat it over and over and over and try to keep a smile on our faces to hide our hearts but damn if people don't insist on dragging our hearts out of our bodies.
We get that dreaded diagnosis, and it can be anywhere along the staging spectrum and that initial stage can change for the worse at any time. With or without treatment. We never know which side of which stat we're on until we get there. Families can strain. Friendships can dissolve mysteriously. Jobs can get lost. As can hair, chunks of flesh, nerves, peace of mind, sleep, appetite. We haggle with insurance companies over life-saving treatments. We face very real financial hardships. (Melanoma is a very expensive cancer). We can be any age when we get that diagnosis. Not everybody is 48 like I was. I was blessed. Three year olds get diagnosed. Teens. Young twenty-somethings.
And the ripples spread. Life sets in and must be lived with melanoma as part of that life but it can become all-consuming. Melanoma gets a real kick out of that. And because life does, indeed, set in, we seek each other out at Hotel Melanoma. We find we're the only ones who really understand us. We get it. We check in with our parents or spouse, sometimes a child. If you check in alone, please seek us out. No one should ever go through this alone. We each have our own relationship with the beast. For some of us he has set up residence in our bodies. He has set up residence in the hearts of our families. So while we share many of the same emotions, we come at them from different perspectives. But we come at them together.
As the ripples spread, that's important because every day, while new people are checking into Hotel Melanoma, over twenty-four are leaving. Every day, 24 people die from this disease in the United States alone. Every day, over 24 families go from having their loved one here to being thrown into a world without their loved one.
The ripples of grief began before the day of death. Grief comes with our diagnosis when our world and life changes. Grief intensifies when we get a higher stage, if that happens. Grief grows with every new unwelcome change to our ever-changing existences. Grief slaps and slaps hard when we hear those words that there's nothing left to try. And when we get word that one of our own is making their final journey, our hearts crush and break for their families. Our grief is nothing compared to the grief the family is dealing with.
And hearts break in Hotel Melanoma. But hearts find healing here, too. Honestly, I was writing this and just finishing my last sentence in that last paragraph when a (1) popped up in my tab opened to Facebook. I took a break to see what it was and a fellow warrior had posted a beautiful picture on my timeline that read, "People see God everyday. They just don't recognize Him." And she wrote her own note, "Thanks for helping me and so many others recognize HIM. :) November! ♥" And Hotel Melanoma's proprietor wasted no time in "liking" that.
And just like that, the ripples have a clear quality whereas before they were muddied. God shows up and God has been at Hotel Melanoma all along. Through the check-ins and the leavings. He is there in the laughter in the halls and rejoicing over good news and He's there in the tears and screams of horror. He walks those hallowed halls with us, picks us up when we are weak, dances a jig with us when we are strong, and carries us home when we leave.
He allows our hearts to break but He is there in the healing and while our broken hearts don't ever look the same as they once did, they beat and their beating takes on a whole new life because it's one borne out of sorrow and pain. Those who bury a warrior stay on at Hotel Melanoma. They've checked in and there really is no leaving for any of us except one way. We are all in this together. There are so many of us that we'll never cross paths with each one. But we cross hearts and we join in prayer. And we ask the Lord's blessing and we get to a place where we see His blessing because we can see Him at work. I'm tempted to say, "Even in a place like Hotel Melanoma." That would be wrong though. He's at work because it IS Hotel Melanoma.
We are His and He will not leave us alone with the beast. He will not leave us alone with each other. He will not look away when we check in and He will not ignore us when we leave.
But God does insist that we go outside Hotel Melanoma. We may be tempted to hunker down in bed and demand room service 24/7. But that's not allowed in this hotel. Since God picks up the tab He gets to write the rules. The rules here are simple and few.
1. Do. Do something to help out around here and lift up your fellow warrior.
2. Pray. Pray whether you feel like it or not, whether you think prayer "works" or not. "Doing" is not an option and neither is praying.
3. Trust. Trust in God and trust each other.
4. Be available. You never know when you're going to be needed or who will need you but you've got something to offer that no one else does and you are necessary at Hotel Melanoma.
5. Share. Share you stories. Share your very lives. Share your faith. Share your hope. Never stop sharing. People need to hear what you have to say and they need to see what you have to show.
6. See. See God use whatever you bring to the table and offer on any given day. It may be you at your worst or it may be you at your best. Hand it over to God and watch Him work. See the beauty that God can bring from the ugly.
7. Love. The rest is meaningless if you can't do it in love. We're here and in it to win it but we can't do that when love isn't present. Heart-healing can't happen when love isn't present. Hope, faith, prayers, nothing about our time here has value when love isn't present. And when we do leave this place, Love sees us Home.
And I am grateful.
We get our diagnosis and life is a whirlwind. Of the hurricane variety. The emotions become overwhelming. We drown in a sea of statistics and knowledge about this disease that we now have and before our diagnosis thought was just skin cancer. No big deal. Then we find out it is a big deal. It's not just skin cancer. It's not just cancer. And we learn just how big and scary a freaking deal it is. Our family learns with us.
We've checked into Hotel Melanoma and despite what the song says, we can leave. But we all know what that means. Far too many do leave. Often far too young. And far too horribly. And that never leaves our minds even though we get really good at acting like it does.
And we get angry and we get fearful. We get determined and dig in our heels. We gather together to ask the Lord's blessing and wonder where it is. We circle our wagons around the suffering, but often it seems like there's more suffering than there are wagons.
And so it is that there is heartbreak in Hotel Melanoma. It begins with our suspicions before our diagnosis if we're "lucky" enough to have them. Many people are thrown into this completely blindsided. OK. I take that back. We're all thrown in here completely blindsided, even if we do have suspicious places because we just don't think it can happen to us. There is heartbreak as we tell our families and friends and have to repeat it over and over and over and try to keep a smile on our faces to hide our hearts but damn if people don't insist on dragging our hearts out of our bodies.
We get that dreaded diagnosis, and it can be anywhere along the staging spectrum and that initial stage can change for the worse at any time. With or without treatment. We never know which side of which stat we're on until we get there. Families can strain. Friendships can dissolve mysteriously. Jobs can get lost. As can hair, chunks of flesh, nerves, peace of mind, sleep, appetite. We haggle with insurance companies over life-saving treatments. We face very real financial hardships. (Melanoma is a very expensive cancer). We can be any age when we get that diagnosis. Not everybody is 48 like I was. I was blessed. Three year olds get diagnosed. Teens. Young twenty-somethings.
And the ripples spread. Life sets in and must be lived with melanoma as part of that life but it can become all-consuming. Melanoma gets a real kick out of that. And because life does, indeed, set in, we seek each other out at Hotel Melanoma. We find we're the only ones who really understand us. We get it. We check in with our parents or spouse, sometimes a child. If you check in alone, please seek us out. No one should ever go through this alone. We each have our own relationship with the beast. For some of us he has set up residence in our bodies. He has set up residence in the hearts of our families. So while we share many of the same emotions, we come at them from different perspectives. But we come at them together.
As the ripples spread, that's important because every day, while new people are checking into Hotel Melanoma, over twenty-four are leaving. Every day, 24 people die from this disease in the United States alone. Every day, over 24 families go from having their loved one here to being thrown into a world without their loved one.
The ripples of grief began before the day of death. Grief comes with our diagnosis when our world and life changes. Grief intensifies when we get a higher stage, if that happens. Grief grows with every new unwelcome change to our ever-changing existences. Grief slaps and slaps hard when we hear those words that there's nothing left to try. And when we get word that one of our own is making their final journey, our hearts crush and break for their families. Our grief is nothing compared to the grief the family is dealing with.
And hearts break in Hotel Melanoma. But hearts find healing here, too. Honestly, I was writing this and just finishing my last sentence in that last paragraph when a (1) popped up in my tab opened to Facebook. I took a break to see what it was and a fellow warrior had posted a beautiful picture on my timeline that read, "People see God everyday. They just don't recognize Him." And she wrote her own note, "Thanks for helping me and so many others recognize HIM. :) November! ♥" And Hotel Melanoma's proprietor wasted no time in "liking" that.
And just like that, the ripples have a clear quality whereas before they were muddied. God shows up and God has been at Hotel Melanoma all along. Through the check-ins and the leavings. He is there in the laughter in the halls and rejoicing over good news and He's there in the tears and screams of horror. He walks those hallowed halls with us, picks us up when we are weak, dances a jig with us when we are strong, and carries us home when we leave.
He allows our hearts to break but He is there in the healing and while our broken hearts don't ever look the same as they once did, they beat and their beating takes on a whole new life because it's one borne out of sorrow and pain. Those who bury a warrior stay on at Hotel Melanoma. They've checked in and there really is no leaving for any of us except one way. We are all in this together. There are so many of us that we'll never cross paths with each one. But we cross hearts and we join in prayer. And we ask the Lord's blessing and we get to a place where we see His blessing because we can see Him at work. I'm tempted to say, "Even in a place like Hotel Melanoma." That would be wrong though. He's at work because it IS Hotel Melanoma.
We are His and He will not leave us alone with the beast. He will not leave us alone with each other. He will not look away when we check in and He will not ignore us when we leave.
But God does insist that we go outside Hotel Melanoma. We may be tempted to hunker down in bed and demand room service 24/7. But that's not allowed in this hotel. Since God picks up the tab He gets to write the rules. The rules here are simple and few.
1. Do. Do something to help out around here and lift up your fellow warrior.
2. Pray. Pray whether you feel like it or not, whether you think prayer "works" or not. "Doing" is not an option and neither is praying.
3. Trust. Trust in God and trust each other.
4. Be available. You never know when you're going to be needed or who will need you but you've got something to offer that no one else does and you are necessary at Hotel Melanoma.
5. Share. Share you stories. Share your very lives. Share your faith. Share your hope. Never stop sharing. People need to hear what you have to say and they need to see what you have to show.
6. See. See God use whatever you bring to the table and offer on any given day. It may be you at your worst or it may be you at your best. Hand it over to God and watch Him work. See the beauty that God can bring from the ugly.
7. Love. The rest is meaningless if you can't do it in love. We're here and in it to win it but we can't do that when love isn't present. Heart-healing can't happen when love isn't present. Hope, faith, prayers, nothing about our time here has value when love isn't present. And when we do leave this place, Love sees us Home.
And I am grateful.
Wednesday, April 25, 2012
Theological Lenses
We all have them. That way we each look at our world, our lives, and try to make sense of it all. Whether we consider ourselves people of any kind of "faith" or "belief system" or not, we are shaped by theology and how we are shaped contributes to how we act in our world.
Theology is an imperfect study of a perfect God (my definition) and "theology" can change over the course of time. We are shaped by our own ideas (our personal theologies) of Who/what God is, if God exists, am I a child of God, am I made in God's image, am I a happen-stance being, am I unique and special or a random mixing of DNA? How we answer those questions plays a large part in how we live and the choices we make, whether we realize it or not.
(Note: "theology" and "doctrine" are not the same thing. "Doctrine is A set of accepted beliefs held by a group. In religion, it is the set of true beliefs that define the parameters of that belief system. Hence, there is true doctrine and false doctrine relative to each belief set." "Theology is the study of God, His nature, attributes, character, abilities, revelation, etc. True theology is found in the Bible which is the self-revelation of God.")
We live in a world where we come in contact with theologies everywhere, though we may not label them "theologies" but call them "worldviews," "ideas," "concepts," "what I believe is...". We are bombarded on the Internet, in the classroom, at home, at work, in society. It's lived out in our daily lives and bumps up against other people living out their personal theologies. Ideally, our theology is shaped by the Church and we get our thinking and lives in line with God's Word. Even for people in the church, that sadly, doesn't always happen because we're in a world where it's "all about me and what I think and what I want."
But even when we do come together to study together, be Church together, and live our lives in community, our theologies are viewed through our own theological lenses. What we bring to the table influences and colors our understanding, even of something so "clear" as the Bible.
Any text I read, whether it be Scripture or a novel, I read through my experience. I read as an American citizen daughter of parents from the Depression and Daddy raised at the Methodist Home for Children from ages 9-18 sister of a brother in recovery home-owning bill-paying voting Caucasian married female 52 years old with 2 grown children and 1 grandchild middle-middle class in rural NC east if I-95 Methodist pastor with a BA in Religion and 1 year Advanced COS from Duke with stage 3b melanoma. I bring every bit of that with me, as well as snapshots of my life up to this point to everything I read, study, preach, and live. I cannot help it. Neither can any of us.
Because I am aware of my own theological lenses, I have to be on notice that everyone I interact with during the day and preach to on Sunday has their own theological lenses as well. Some will be similar and some will be entirely different. Every time my life adds another critical milestone, my lens adds another dimension. And let's not forget the hue of our lens. Some of us view through rose-colored specs and some of us view through gray. Some are clear and some are fogged over or caked in dirt. Some are in focus and some are out of focus.
People often mistake me for a rose-colored optimist. I'm actually a realist who chooses to look for a rainbow, if one is there to be found, and when it's not, I choose to dance through the storm which is sure to break eventually. I can size up and assess situations and people pretty accurately. I may choose to not be open with my assessments for various reasons, but I talk them out with God.
We can, in short, never really be sure what lenses people are really looking through. There's always something we don't know. And God is always working on our own lens. God the Great Ophthalmologist.
When I was 39 I was at my ophthalmologist and preparing to leave. He was writing out a new prescription and explaining the problems it would correct. I asked, "Will it help...?" and described a problem I was having but hadn't mentioned because I thought it was no big deal. He stopped writing, looked at me and with all seriousness said those two little words we all love to hear our doctors say...
"Oh no."
My vision was then put through tests I had never had in all my years of wearing glasses/contacts/back to glasses and I had been his patient since I was 5 years old. He made notes. He tested. And when he was through he gave me his dire-sounding verdict...
"We don't usually see this before 40 but you need bifocals."
For the next ten years, every new pair of glasses was line-less bifocals so people wouldn't be able to look at me and know I was old. That pride cost roughly $100 for each pair and I paid several hundreds of dollars for it. Pride costs. When I turned 50, I was dealing with melanoma, which is a bigger deal than bifocals and more expensive. Melanoma had already tossed my "pride" out the window and eventually my bifocals became obvious to all who cared to look.
With my bifocals came the ability to see up close clearly and see in the distance clearly. Something I had been missing in my more immediate pre-bifocal days. And I learned the need for bifocal theological lenses.
When I read a passage or interact with people, it's so easy to not see beyond myself. It's easy, and human nature, to look through my own journey and filter through my own experiences, beliefs, and preferences. But God has given me bifocals and is teaching me to use them. That means looking out at the distance and seeing where He is working and determining, as best as I can at the moment, what His bigger picture looks like. It means accepting the fact that I'm not the only person with theological lenses, I'm just the only person with my particular prescription. And while it's God-given, it's not perfect because I'm not perfect.
One day I will be though. God willing. Until then I'll take it one day at a time.
And be grateful for the privilege.
Theology is an imperfect study of a perfect God (my definition) and "theology" can change over the course of time. We are shaped by our own ideas (our personal theologies) of Who/what God is, if God exists, am I a child of God, am I made in God's image, am I a happen-stance being, am I unique and special or a random mixing of DNA? How we answer those questions plays a large part in how we live and the choices we make, whether we realize it or not.
(Note: "theology" and "doctrine" are not the same thing. "Doctrine is A set of accepted beliefs held by a group. In religion, it is the set of true beliefs that define the parameters of that belief system. Hence, there is true doctrine and false doctrine relative to each belief set." "Theology is the study of God, His nature, attributes, character, abilities, revelation, etc. True theology is found in the Bible which is the self-revelation of God.")
We live in a world where we come in contact with theologies everywhere, though we may not label them "theologies" but call them "worldviews," "ideas," "concepts," "what I believe is...". We are bombarded on the Internet, in the classroom, at home, at work, in society. It's lived out in our daily lives and bumps up against other people living out their personal theologies. Ideally, our theology is shaped by the Church and we get our thinking and lives in line with God's Word. Even for people in the church, that sadly, doesn't always happen because we're in a world where it's "all about me and what I think and what I want."
But even when we do come together to study together, be Church together, and live our lives in community, our theologies are viewed through our own theological lenses. What we bring to the table influences and colors our understanding, even of something so "clear" as the Bible.
Any text I read, whether it be Scripture or a novel, I read through my experience. I read as an American citizen daughter of parents from the Depression and Daddy raised at the Methodist Home for Children from ages 9-18 sister of a brother in recovery home-owning bill-paying voting Caucasian married female 52 years old with 2 grown children and 1 grandchild middle-middle class in rural NC east if I-95 Methodist pastor with a BA in Religion and 1 year Advanced COS from Duke with stage 3b melanoma. I bring every bit of that with me, as well as snapshots of my life up to this point to everything I read, study, preach, and live. I cannot help it. Neither can any of us.
Because I am aware of my own theological lenses, I have to be on notice that everyone I interact with during the day and preach to on Sunday has their own theological lenses as well. Some will be similar and some will be entirely different. Every time my life adds another critical milestone, my lens adds another dimension. And let's not forget the hue of our lens. Some of us view through rose-colored specs and some of us view through gray. Some are clear and some are fogged over or caked in dirt. Some are in focus and some are out of focus.
People often mistake me for a rose-colored optimist. I'm actually a realist who chooses to look for a rainbow, if one is there to be found, and when it's not, I choose to dance through the storm which is sure to break eventually. I can size up and assess situations and people pretty accurately. I may choose to not be open with my assessments for various reasons, but I talk them out with God.
We can, in short, never really be sure what lenses people are really looking through. There's always something we don't know. And God is always working on our own lens. God the Great Ophthalmologist.
When I was 39 I was at my ophthalmologist and preparing to leave. He was writing out a new prescription and explaining the problems it would correct. I asked, "Will it help...?" and described a problem I was having but hadn't mentioned because I thought it was no big deal. He stopped writing, looked at me and with all seriousness said those two little words we all love to hear our doctors say...
"Oh no."
My vision was then put through tests I had never had in all my years of wearing glasses/contacts/back to glasses and I had been his patient since I was 5 years old. He made notes. He tested. And when he was through he gave me his dire-sounding verdict...
"We don't usually see this before 40 but you need bifocals."
For the next ten years, every new pair of glasses was line-less bifocals so people wouldn't be able to look at me and know I was old. That pride cost roughly $100 for each pair and I paid several hundreds of dollars for it. Pride costs. When I turned 50, I was dealing with melanoma, which is a bigger deal than bifocals and more expensive. Melanoma had already tossed my "pride" out the window and eventually my bifocals became obvious to all who cared to look.
With my bifocals came the ability to see up close clearly and see in the distance clearly. Something I had been missing in my more immediate pre-bifocal days. And I learned the need for bifocal theological lenses.
When I read a passage or interact with people, it's so easy to not see beyond myself. It's easy, and human nature, to look through my own journey and filter through my own experiences, beliefs, and preferences. But God has given me bifocals and is teaching me to use them. That means looking out at the distance and seeing where He is working and determining, as best as I can at the moment, what His bigger picture looks like. It means accepting the fact that I'm not the only person with theological lenses, I'm just the only person with my particular prescription. And while it's God-given, it's not perfect because I'm not perfect.
One day I will be though. God willing. Until then I'll take it one day at a time.
And be grateful for the privilege.
Tuesday, April 24, 2012
The Giants Of Life And Faith
Fear. Of death, spread of disease, appointments, tests, results, dying, angst, ourselves, people, reactions, our loved ones' fears that they project onto us because they fear what's happening to us and what that means for them. The list of our fears seems endless and they can stem from each other and feed off of each other.
Financial burdens. Bankruptcy, depleted savings, second or third jobs, having to retire early or quit due to health, dipping into retirement fund, climbing medical bills, possible loss of insurance, no insurance, selling off items, cutting out expenses, cutting back where able. The dreams we'll shelve and the plans we'll table seem endless, yet are often necessary to temporarily cut loose while we pursue the larger dream of living.
Anger. At everyone and everything. At God, life, the past we can't relive differently and the present we can't change and the future we may not see and certainly won't be what we planned if we do see it, at death, at ourselves. The anger we wish we didn't feel and often try to deny because we think people of faith can feel anything but we're not supposed to feel anger so we get angry about being angry.
Grief. Over changes we have no control over. Over circumstances, plans that won't materialize, lives that won't be lived as planned, hopes and dreams that become hopeless and nightmares, facing our mortality, facing the mortality of those we love. Grief has no age limit, no matter how we look at it or from what end of the spectrum.
Pity. Pity from others. Self-pity. Pity parties. We don't like "fear." We don't like being "angry." We step up and deal with the financial challenges as best we can. But don't give us pity. And when we take a few minutes off to throw ourselves a pity party, it's a table for one, and when we've had enough, we need a bouncer to come forward and call us on it and toss us out. That's the person we need when self pity rears its ugly head, not someone to pull up a chair and help us drown our sorrows.
Fear. Financial burdens. Anger. Grief. Pity. All are giants we may face in life. But when life includes a challenging disease like cancer or a chronic condition, we are more than likely going to face all of them at once at some point.
So let's acknowledge them. When we do that that's the first step in facing them. And face them we must because they're there, they aren't going anywhere and we render them less powerful when we turn and face them instead of trying to ignore them, hide from them, or run from them. Some come at us from within and some come at us from without.
Some giants we must determine to push through and some we will decide to knock down to size so they are more manageable. These aren't giants we can kill for they are emotional, spiritual, psychological. But though they are giants, they are not bigger than God. When we can't push through or knock them down to size, God is more than able.
I live in a world where I am privileged to watch people live with giants in the room and they go about their business because they must. The giants may seem larger than life but life must be lived and giants come and go but life can't be jarred and stored for a while until we're ready to face it.
Breath must be taken, steps must be made, bodies must be fed, bills must be paid, life goes on and life demands to be lived. Even when we're weighed down by giants.
I've watched breathless as friends haul their giants with them and they get out of bed, open a new business, live an old dream, walk down the aisle, enlarge their family, go back to school, get a new job, keep playing and doing, face the appointments, make the decisions; and some friends live while they're dying because they know their giants and death don't have the final word.
See, I listed some giants we lug around, have to turn and face, must push through or knock down to size. Those are giants that come with life. But there are other giants. Giants that we, people of faith, choose and they are bigger than the giants of life.
Hope. Faith. Belief. Trust. Love. Prayer. Each other. Knowledge we aren't alone. Scripture. Song. Praise. Family. Friends. Memories. Angels. God.
These are the giants we look up to, rely on, and embrace. We face them gladly. We rush to them. And we don't want to knock them down to size because we need them to be larger than life for it is in these giants that we find our life.
The giants of life are no match for the giants of faith.
We all live with giants. It's how we live with them that matters.
There are giants we have no control over and do not choose. Those are the giants of life.
And then there are the giants of faith, God being the most Giant of them all.
God is bigger than our other giants of faith and God is definitely bigger than the giants of life.
As we carry around life's giants of all kinds, may we look beyond the giants our eyes see at work and turn our eyes of faith toward the giants of faith and see God at work
and be grateful that God has the last word over all.
Financial burdens. Bankruptcy, depleted savings, second or third jobs, having to retire early or quit due to health, dipping into retirement fund, climbing medical bills, possible loss of insurance, no insurance, selling off items, cutting out expenses, cutting back where able. The dreams we'll shelve and the plans we'll table seem endless, yet are often necessary to temporarily cut loose while we pursue the larger dream of living.
Anger. At everyone and everything. At God, life, the past we can't relive differently and the present we can't change and the future we may not see and certainly won't be what we planned if we do see it, at death, at ourselves. The anger we wish we didn't feel and often try to deny because we think people of faith can feel anything but we're not supposed to feel anger so we get angry about being angry.
Grief. Over changes we have no control over. Over circumstances, plans that won't materialize, lives that won't be lived as planned, hopes and dreams that become hopeless and nightmares, facing our mortality, facing the mortality of those we love. Grief has no age limit, no matter how we look at it or from what end of the spectrum.
Pity. Pity from others. Self-pity. Pity parties. We don't like "fear." We don't like being "angry." We step up and deal with the financial challenges as best we can. But don't give us pity. And when we take a few minutes off to throw ourselves a pity party, it's a table for one, and when we've had enough, we need a bouncer to come forward and call us on it and toss us out. That's the person we need when self pity rears its ugly head, not someone to pull up a chair and help us drown our sorrows.
Fear. Financial burdens. Anger. Grief. Pity. All are giants we may face in life. But when life includes a challenging disease like cancer or a chronic condition, we are more than likely going to face all of them at once at some point.
So let's acknowledge them. When we do that that's the first step in facing them. And face them we must because they're there, they aren't going anywhere and we render them less powerful when we turn and face them instead of trying to ignore them, hide from them, or run from them. Some come at us from within and some come at us from without.
Some giants we must determine to push through and some we will decide to knock down to size so they are more manageable. These aren't giants we can kill for they are emotional, spiritual, psychological. But though they are giants, they are not bigger than God. When we can't push through or knock them down to size, God is more than able.
I live in a world where I am privileged to watch people live with giants in the room and they go about their business because they must. The giants may seem larger than life but life must be lived and giants come and go but life can't be jarred and stored for a while until we're ready to face it.
Breath must be taken, steps must be made, bodies must be fed, bills must be paid, life goes on and life demands to be lived. Even when we're weighed down by giants.
I've watched breathless as friends haul their giants with them and they get out of bed, open a new business, live an old dream, walk down the aisle, enlarge their family, go back to school, get a new job, keep playing and doing, face the appointments, make the decisions; and some friends live while they're dying because they know their giants and death don't have the final word.
See, I listed some giants we lug around, have to turn and face, must push through or knock down to size. Those are giants that come with life. But there are other giants. Giants that we, people of faith, choose and they are bigger than the giants of life.
Hope. Faith. Belief. Trust. Love. Prayer. Each other. Knowledge we aren't alone. Scripture. Song. Praise. Family. Friends. Memories. Angels. God.
These are the giants we look up to, rely on, and embrace. We face them gladly. We rush to them. And we don't want to knock them down to size because we need them to be larger than life for it is in these giants that we find our life.
The giants of life are no match for the giants of faith.
We all live with giants. It's how we live with them that matters.
There are giants we have no control over and do not choose. Those are the giants of life.
And then there are the giants of faith, God being the most Giant of them all.
God is bigger than our other giants of faith and God is definitely bigger than the giants of life.
As we carry around life's giants of all kinds, may we look beyond the giants our eyes see at work and turn our eyes of faith toward the giants of faith and see God at work
and be grateful that God has the last word over all.
Monday, April 23, 2012
Heaven's Band: Federici and Marley. More Than A Melanoma Bond
I love music. Not all kinds, to be sure, but I love what I love. I'm not musical though. God gave the playing and writing music talents to my brother. Mama tried her level best to work around those facts but after years of trying to make and mold me into a musician, she finally conceded defeat. I said one time that "my musical ability was that I owned an auto-harp."
That said, I do love music. I have a great appreciation for those that play, write, and share their passion with the rest of us. I love contemporary Christian. But, I also love Rock-and-Roll. My hands down, all time favorites are Bruce Springsteen and Meatloaf. While I love their lyrics, because I'm the kind that loves to belt along (I don't just "sing"...I belt it out loud and strong. I didn't say "good"), The Boss and Meatloaf are nothing without their bands. And the lyrics are nothing without the rhythms and total goodness that the musicians produce. If Bruce had a band made up of people who play like me...well...let's just say he wouldn't be a household word. And "Meatloaf" would still be what people have for supper. They are who they are because their bands are who they are and the caliber musicians they are.
I never was much on reggae, though, until recently. It wasn't something I grew up hearing and WWDR didn't play any. (WWDR is the local radio station I grew up listening to). Reggae entered my life after melanoma did and it entered in the music of Bob Marley, particularly his Three Little Birds.
I've written about Bob Marley before. He died from melanoma and that's important to hold up to people, particularly men with darker skin colors, so they understand it can attack anybody. Marley, though, tried to run from his diagnosis and wasn't upfront about having melanoma. When he died, people weren't always sure what he really died of. Melanoma? Skin cancer? Brain cancer? Cancer?
I have melanoma and love of music bonds with Marley. I also have those same bonds with Danny Federici who was "the organ, glockenspiel, and accordion player for Bruce Springsteen's E Street Band" for almost 40 years. The more I learn about this remarkable man and musician, who didn't try to hide from his melanoma diagnosis but fought and when he died, people knew exactly what he died from, the more I want to know and share. I also hope to leave the kind of legacy he left. The kind of legacy that takes something like melanoma and turns it into a blessing.
To digress a minute. This morning God granted me a little 20/20 hindsight so I could get a glimpse of what He's been busy doing. I don't know why He's been busy doing it, but that's OK. My inquiring mind is small and I don't want to know right now. Right now I'm just trying to absorb this much.
I occupy a little corner of Facebook like hundreds of millions of other people worldwide. I haven't crossed paths but with a small fraction of that number. Small fraction behind a decimal and lots of zeros. But I stand amazed at those I've crossed paths with and many share a melanoma bond. Before moving to FB, I had crossed paths with the proprietor of Hotel Melanoma on a melanoma-specific website. I was already a fan of his work before friending him on FB and being named the Chaplain of HM. He claims not to be musical either, not even singing, but he loves Rock and gives a melanoma twist to the classics. Meatloaf is, sadly, missing from his repertoire. Alas and alack. But life goes on.
Rich will be coming to Charlotte, NC and participating in the Aim at Melanoma Walk November 17th. At the after party that night, we'll all be singing some of his songs and it occurred to me that we need to sing some Marley and some Springsteen. Marley because he's one of us and Springsteen to honor Danny Federici who's one of us.
And you know what? Because of melanoma, God had already crossed my path with someone who can tell me about Danny, both as a musician and as a warrior, and as a person who was both and more. I didn't realize her connection till very recently and she's been most generous in sharing with me and I greatly appreciate her openness. I choose to honor her privacy here, and I also choose to honor her story and life with Danny and will not go into it at all. That's hers to share as she wishes and certainly not mine. I just stand back and marvel that God crossed our paths.
Because of her sharing with me, I'm more strongly convinced now more than ever that melanoma cannot kill our spirit, our drive, even at the end. I'm more convinced of the kind of legacy I want to leave. I'm more convinced of the kind of life I want to lead in the face of melanoma. Danny epitomizes, fully, living in the face of dying and giving it one's all. He epitomizes using our God-given talents until the end, and he epitomizes clarifying the legacy we want to leave and making sure it's done. He had the talent, resources, and connections to do it one way. I have the talent, resources, and connections to do it another. His way fit him. My way fits me.
This is Danny's last performance. March 20, 2008. March 19th he was undergoing treatment at Sloan-Kettering. Read his son's account. April 17th, 2008 Danny Federici died. Heaven gained an awesome accordion player. Now watch the video of that performance.
I stand in awe of anyone with that kind of fortitude and passion. Anyone with that kind of attirude that looks melanoma and death in the face and plays on anyway and in spite of. I can't look at that video, knowing what little I know, and not be amazed by the human spirit. I can't look at him and know how very sick he was. It doesn't show. Melanoma could only do so much. It couldn't kill his love of music, his love of his band, his love of his family, and his love of life. And melanoma couldn't kill their love for him. Watch The Boss' eyes and body language. He loved this guy. They all did and it was returned.
And Heaven has a rocking accordionist and a reggae man. What a band! And earth has memories, legacies, and Danny Fund. Though Danny Fund was begun after Danny's death, it was begun because of his life and his desire to fund melanoma research. Specifically the melanoma research of his doctor at Sloan-Kettering, Dr. Chapman. Dr. Chapman had developed the trial Danny was on and he believed in his work and wanted it funded after his death. Hence, Danny Fund.
Hungry Heart was another Federici signature song. This is one we'll definitely be doing November 17th. Rich already has this one in his repertoire.
We in Melaland all have Hungry Hearts. Hungry Hearts for more treatment options. Hungry Hearts for a cure. Hungry Hearts to kick our own cases of melanoma to the curb and kick melanoma in the butt and out the world's door.
That kind of kicking and hunger takes money and resources. Danny did his part and his part plays on.
It will take all of us playing our parts to make it happen. We all have voices to use and life's instruments to play in this world's orchestra. And we have one life to do it in. Together we can make it happen.
See, I happen to think that we're in the Band of Life. We're in this together. We weren't meant to sing it solo. We're meant to harmonize, rock it up, throw in some reggae, dance through it all, and just like we each bring our strong suits to the table, we also prop each other up when we're at our weakest.
God sang, God sings, God plays, God dances, here with us and there with them.
Right now I get to listen to The Boss and sing along. I get to listen to the jamming sounds of Federici and the uplifting reminder to don't worry be happy because every little thing gonna be all right from Marley.
But one day. Oh man! One day! I'm gonna bump shoulders with Bob, dance with Danny, and sing the songs they play. In person. In Heaven's Band.
Melanoma won't even be in the cheap seats.
Some concerts never end.
And I am grateful!
That said, I do love music. I have a great appreciation for those that play, write, and share their passion with the rest of us. I love contemporary Christian. But, I also love Rock-and-Roll. My hands down, all time favorites are Bruce Springsteen and Meatloaf. While I love their lyrics, because I'm the kind that loves to belt along (I don't just "sing"...I belt it out loud and strong. I didn't say "good"), The Boss and Meatloaf are nothing without their bands. And the lyrics are nothing without the rhythms and total goodness that the musicians produce. If Bruce had a band made up of people who play like me...well...let's just say he wouldn't be a household word. And "Meatloaf" would still be what people have for supper. They are who they are because their bands are who they are and the caliber musicians they are.
I never was much on reggae, though, until recently. It wasn't something I grew up hearing and WWDR didn't play any. (WWDR is the local radio station I grew up listening to). Reggae entered my life after melanoma did and it entered in the music of Bob Marley, particularly his Three Little Birds.
I've written about Bob Marley before. He died from melanoma and that's important to hold up to people, particularly men with darker skin colors, so they understand it can attack anybody. Marley, though, tried to run from his diagnosis and wasn't upfront about having melanoma. When he died, people weren't always sure what he really died of. Melanoma? Skin cancer? Brain cancer? Cancer?
I have melanoma and love of music bonds with Marley. I also have those same bonds with Danny Federici who was "the organ, glockenspiel, and accordion player for Bruce Springsteen's E Street Band" for almost 40 years. The more I learn about this remarkable man and musician, who didn't try to hide from his melanoma diagnosis but fought and when he died, people knew exactly what he died from, the more I want to know and share. I also hope to leave the kind of legacy he left. The kind of legacy that takes something like melanoma and turns it into a blessing.
To digress a minute. This morning God granted me a little 20/20 hindsight so I could get a glimpse of what He's been busy doing. I don't know why He's been busy doing it, but that's OK. My inquiring mind is small and I don't want to know right now. Right now I'm just trying to absorb this much.
I occupy a little corner of Facebook like hundreds of millions of other people worldwide. I haven't crossed paths but with a small fraction of that number. Small fraction behind a decimal and lots of zeros. But I stand amazed at those I've crossed paths with and many share a melanoma bond. Before moving to FB, I had crossed paths with the proprietor of Hotel Melanoma on a melanoma-specific website. I was already a fan of his work before friending him on FB and being named the Chaplain of HM. He claims not to be musical either, not even singing, but he loves Rock and gives a melanoma twist to the classics. Meatloaf is, sadly, missing from his repertoire. Alas and alack. But life goes on.
Rich will be coming to Charlotte, NC and participating in the Aim at Melanoma Walk November 17th. At the after party that night, we'll all be singing some of his songs and it occurred to me that we need to sing some Marley and some Springsteen. Marley because he's one of us and Springsteen to honor Danny Federici who's one of us.
And you know what? Because of melanoma, God had already crossed my path with someone who can tell me about Danny, both as a musician and as a warrior, and as a person who was both and more. I didn't realize her connection till very recently and she's been most generous in sharing with me and I greatly appreciate her openness. I choose to honor her privacy here, and I also choose to honor her story and life with Danny and will not go into it at all. That's hers to share as she wishes and certainly not mine. I just stand back and marvel that God crossed our paths.
Because of her sharing with me, I'm more strongly convinced now more than ever that melanoma cannot kill our spirit, our drive, even at the end. I'm more convinced of the kind of legacy I want to leave. I'm more convinced of the kind of life I want to lead in the face of melanoma. Danny epitomizes, fully, living in the face of dying and giving it one's all. He epitomizes using our God-given talents until the end, and he epitomizes clarifying the legacy we want to leave and making sure it's done. He had the talent, resources, and connections to do it one way. I have the talent, resources, and connections to do it another. His way fit him. My way fits me.
This is Danny's last performance. March 20, 2008. March 19th he was undergoing treatment at Sloan-Kettering. Read his son's account. April 17th, 2008 Danny Federici died. Heaven gained an awesome accordion player. Now watch the video of that performance.
I stand in awe of anyone with that kind of fortitude and passion. Anyone with that kind of attirude that looks melanoma and death in the face and plays on anyway and in spite of. I can't look at that video, knowing what little I know, and not be amazed by the human spirit. I can't look at him and know how very sick he was. It doesn't show. Melanoma could only do so much. It couldn't kill his love of music, his love of his band, his love of his family, and his love of life. And melanoma couldn't kill their love for him. Watch The Boss' eyes and body language. He loved this guy. They all did and it was returned.
And Heaven has a rocking accordionist and a reggae man. What a band! And earth has memories, legacies, and Danny Fund. Though Danny Fund was begun after Danny's death, it was begun because of his life and his desire to fund melanoma research. Specifically the melanoma research of his doctor at Sloan-Kettering, Dr. Chapman. Dr. Chapman had developed the trial Danny was on and he believed in his work and wanted it funded after his death. Hence, Danny Fund.
Hungry Heart was another Federici signature song. This is one we'll definitely be doing November 17th. Rich already has this one in his repertoire.
We in Melaland all have Hungry Hearts. Hungry Hearts for more treatment options. Hungry Hearts for a cure. Hungry Hearts to kick our own cases of melanoma to the curb and kick melanoma in the butt and out the world's door.
That kind of kicking and hunger takes money and resources. Danny did his part and his part plays on.
It will take all of us playing our parts to make it happen. We all have voices to use and life's instruments to play in this world's orchestra. And we have one life to do it in. Together we can make it happen.
See, I happen to think that we're in the Band of Life. We're in this together. We weren't meant to sing it solo. We're meant to harmonize, rock it up, throw in some reggae, dance through it all, and just like we each bring our strong suits to the table, we also prop each other up when we're at our weakest.
God sang, God sings, God plays, God dances, here with us and there with them.
Right now I get to listen to The Boss and sing along. I get to listen to the jamming sounds of Federici and the uplifting reminder to don't worry be happy because every little thing gonna be all right from Marley.
But one day. Oh man! One day! I'm gonna bump shoulders with Bob, dance with Danny, and sing the songs they play. In person. In Heaven's Band.
Melanoma won't even be in the cheap seats.
Some concerts never end.
And I am grateful!
Friday, April 20, 2012
Keeping The Dream Alive In Melaland
When I was a little girl, I'm sure I had dreams but I don't remember what they were. I went through a phase in first through fourth grades where I wanted to be every "-ologist" known to man. All at the same time. Somewhere around the age of nine or ten I discovered the written word and found I enjoyed writing. While I was the bane of my English teachers all through school because I never understood the parts of speech, I loved to write. On my own time I wrote poems, plays, and short stories. I can't say that I ever dreamed of being a "writer" though. Maybe because I already was one.
It was around this time, when I was between nine and ten, that my mama's younger sister-in-law, my most favorite person in the world, Lou, was diagnosed with hypoglycemia. I spent a week the summer I turned eleven with her and her family (my uncle and their two young sons, 3 and 6 months) and witnessed her spells when her blood sugar went whacky. But Lou had this spirit that just drew people to her and at nights their tiny apartment living room would fill up with her friends. I had taken my notebook of my writings with me. I didn't leave home without it if I was going to be gone a while. A week was "a while." Lou was the only person to ever see that notebook. She taught ESL in the DC area and she actually appreciated my work and made me feel like I could write. One evening, to my horror, she shared with her gathered friends that I was a writer. She mentioned a particular poem, but she talked with pride about me and my writing. Pride. And her friends thought that was grand. I loved her all the more from that evening on.
Somewhere around the time I turned twelve, she was diagnosed with brain cancer. Even when we received word that she was in the hospital and it didn't look like she would be leaving, I just knew she'd live. I'd been praying from the moment I heard she had cancer, and since I was Carol and I was special to God, well, God was not going to let me down. Even if it came down to the absolute last second of her last breath, God would work a miracle and Lou would live and leave the hospital and all this time would become a faded memory in time.
That didn't happen. I turned thirteen in September, she died in October, and she would have been thirty-two in November. I was at that age where my parents "didn't understand me." Lou did. Now she was gone and to say "God let me down" would be a gross understatement. There was so much I just didn't understand at the time.
Her death set me on a path though and helped shape me into who I am now. One piece of the path was I now had a focus. I was going to go into cancer research and find that damn cure if it was the last thing I did. In tenth grade biology I fell in love with genetics and became convinced that the answer to that elusive cancer cure would be found there. When I enrolled at Meredith College I already had a declared major of Biology with the plan of getting my Masters in genetics and research. I didn't have a plan beyond that but to find that cure for cancer.
Life was stepping in at Meredith but I couldn't see it. Wouldn't you know it, but Religion was required at this Baptist college. I'd been active in my home Methodist church all my life and held just about every position in MYF, even while I was angry enough at God to spit nails. I'd even been part of the Administrative Board with the grown-ups and sang in the adult choir. I was a very good practicing hypocrite. One of the best. I knew my Bible and had maintained an extremely active prayer life, even through the worst of my "glory days." Really. For four years. Guess what? God was big enough. Still is. Always will be.
I loved my Religion classes, hated the Biology ones. Hated Meredith. Was ready to get married. Left Meredith after one year and went back home to plan my wedding and go to Chowan College, majoring in Religion. What? Really. God was laughing hysterically by now, which was OK because we had made up and were now on good terms.
So here I am now, many years later, a Methodist pastor, with stage 3b melanoma, and I find I'm living the dream.
So what has me thinking so much about life's dreams? Bruce Wilkinson's fantastic little book The Dream Giver: Following Your God-Given Destiny. God brought it into my life this week, at the right time, and I recognize where I am and where my church is. I'm looking back and piecing together my life and seeing where God has woven together threads that I thought were frays.
And He has done in spite of me. He has taken giants that were and are in my life and knocked them down to size and used those giants to lead me and sharpen my focus and dream. Some of the giants are still there, I must be honest. Fear, panic, dread are still there. But you know what? So's the dream. And so am I and so is God. I can still live the dream WITH those giants. I don't have to wait for the giants to go away and disappear because they aren't. Not this side of heaven. I'm human for as long as I'm here. Before reading this book, I thought I couldn't live the dream and live it with fear at the same time. God is bigger than the fear, He's the Author of the Dream and as long as I keep putting the dream back in His Hands and follow his lead, I can live the dream with fear by my side because God is also at my side and He's bigger than any fear ever will be.
And I can live the dream with the giant of melanoma present in my life. That's a specter that isn't going to go away while I'm alive. And that giant is the fount from which much of my fear springs from. And it's OK. I'm bigger than melanoma. It's only a part of my life. It's by no means the sum total of me.
So what "dream" am I living? Well, I'm involved in cancer research and finding that blasted cure. But not in the way I thought I would be in high school. That way didn't fit me. I'm not a medical-minded person and I hate needles. I'm not that person and that's the person I would have to have been to go into research the way I first envisioned. I'm a prayer warrior. I'm a person that talks to God, a lot, and I'm not always nice about it. I'm blunt honest. I cry. I get angry. I'm damned persistent and I say "hell" and "damn" and I know as long as I'm honest God can handle my language because that's as rough as I get and He knows when I'm done and calm down I'll apologize. As a teenager grieving Lou I didn't sugarcoat my prayers and God was big enough to handle me and not strike me with lightning and I learned He can handle honesty...it's not being honest with Him that He has a problem with. So I pray for cancer researchers. A lot. Melanoma researchers in particular. A lot. I pray for those fighting melanoma. A lot. I see answers happening. A lot. Not because of me but because God is rallying pray-ers and answering the prayers He's receiving. A lot. He can't answer prayers that don't get prayed. And I've learned and relearned that the prayers aren't always answered to my specifications but God knows what He's doing even if I don't.
Being a pray-er with melanoma has opened doors where I can use my love of writing. Life is pulling together and good comes from bad. And because we don't live our lives in segments, church spills over into melanoma and melanoma spills over into church and family is in the mix and the dream is there and being lived and God is over it all. Whew!
You know something funny? My melanoma world is the only world where I actually write. I don't write my sermons unless they are for a wedding or a funeral. But it all overlaps nonetheless. After all this time God is honoring the dream He gave me. It took a little book to open my eyes and help me see how.
Every one of us has a God given dream. Every one. I do so believe that. And it's a grand dream and it's a dream only you can fulfill in the way you were meant to fulfill it. You have a lifetime, just like the rest of us, to live it. So don't let fear or giants or cancer or particularly melanoma or anything else stop you. The mountains are going to be there but they are not bigger than the God Who placed that dream inside you. The fear isn't bigger. The melanoma isn't bigger. The dream is meant to be pursued and lived with the giants watching. Push through them. Pray them down to size. Expect surprises. Expect God to work. Wherever you are God can work. If you're in the hospital hooked to tubes and needles undergoing treatment, God is still at work using you and He still wants you to live the dream He gave you, even if it doesn't look like what you first dreamed. The thing is, you have to want that too. God may give us the dream but He never forces us to live it. That's our own choice.
God is God. Everywhere for all time. The state of our health and the places we find ourselves are no obstacles for the God of the Universe. And He still is the Author and Creator of us and our dreams.
As I write this, I think Lou is looking at me, reading what I write and being proud.
Her death helped shape me as much as her life did. Cancer didn't have the last word then and it doesn't now.
And dreams don't die just because cancer may become part of our own life. Our dreams may look different than they once did, but they can still be pursued and lived. Cancer doesn't kill our dreams. It doesn't have that kind of power unless we give it that power. And we don't have to do that. At all. Ever.
And I am forever grateful.
It was around this time, when I was between nine and ten, that my mama's younger sister-in-law, my most favorite person in the world, Lou, was diagnosed with hypoglycemia. I spent a week the summer I turned eleven with her and her family (my uncle and their two young sons, 3 and 6 months) and witnessed her spells when her blood sugar went whacky. But Lou had this spirit that just drew people to her and at nights their tiny apartment living room would fill up with her friends. I had taken my notebook of my writings with me. I didn't leave home without it if I was going to be gone a while. A week was "a while." Lou was the only person to ever see that notebook. She taught ESL in the DC area and she actually appreciated my work and made me feel like I could write. One evening, to my horror, she shared with her gathered friends that I was a writer. She mentioned a particular poem, but she talked with pride about me and my writing. Pride. And her friends thought that was grand. I loved her all the more from that evening on.
Somewhere around the time I turned twelve, she was diagnosed with brain cancer. Even when we received word that she was in the hospital and it didn't look like she would be leaving, I just knew she'd live. I'd been praying from the moment I heard she had cancer, and since I was Carol and I was special to God, well, God was not going to let me down. Even if it came down to the absolute last second of her last breath, God would work a miracle and Lou would live and leave the hospital and all this time would become a faded memory in time.
That didn't happen. I turned thirteen in September, she died in October, and she would have been thirty-two in November. I was at that age where my parents "didn't understand me." Lou did. Now she was gone and to say "God let me down" would be a gross understatement. There was so much I just didn't understand at the time.
Her death set me on a path though and helped shape me into who I am now. One piece of the path was I now had a focus. I was going to go into cancer research and find that damn cure if it was the last thing I did. In tenth grade biology I fell in love with genetics and became convinced that the answer to that elusive cancer cure would be found there. When I enrolled at Meredith College I already had a declared major of Biology with the plan of getting my Masters in genetics and research. I didn't have a plan beyond that but to find that cure for cancer.
Life was stepping in at Meredith but I couldn't see it. Wouldn't you know it, but Religion was required at this Baptist college. I'd been active in my home Methodist church all my life and held just about every position in MYF, even while I was angry enough at God to spit nails. I'd even been part of the Administrative Board with the grown-ups and sang in the adult choir. I was a very good practicing hypocrite. One of the best. I knew my Bible and had maintained an extremely active prayer life, even through the worst of my "glory days." Really. For four years. Guess what? God was big enough. Still is. Always will be.
I loved my Religion classes, hated the Biology ones. Hated Meredith. Was ready to get married. Left Meredith after one year and went back home to plan my wedding and go to Chowan College, majoring in Religion. What? Really. God was laughing hysterically by now, which was OK because we had made up and were now on good terms.
So here I am now, many years later, a Methodist pastor, with stage 3b melanoma, and I find I'm living the dream.
So what has me thinking so much about life's dreams? Bruce Wilkinson's fantastic little book The Dream Giver: Following Your God-Given Destiny. God brought it into my life this week, at the right time, and I recognize where I am and where my church is. I'm looking back and piecing together my life and seeing where God has woven together threads that I thought were frays.
And He has done in spite of me. He has taken giants that were and are in my life and knocked them down to size and used those giants to lead me and sharpen my focus and dream. Some of the giants are still there, I must be honest. Fear, panic, dread are still there. But you know what? So's the dream. And so am I and so is God. I can still live the dream WITH those giants. I don't have to wait for the giants to go away and disappear because they aren't. Not this side of heaven. I'm human for as long as I'm here. Before reading this book, I thought I couldn't live the dream and live it with fear at the same time. God is bigger than the fear, He's the Author of the Dream and as long as I keep putting the dream back in His Hands and follow his lead, I can live the dream with fear by my side because God is also at my side and He's bigger than any fear ever will be.
And I can live the dream with the giant of melanoma present in my life. That's a specter that isn't going to go away while I'm alive. And that giant is the fount from which much of my fear springs from. And it's OK. I'm bigger than melanoma. It's only a part of my life. It's by no means the sum total of me.
So what "dream" am I living? Well, I'm involved in cancer research and finding that blasted cure. But not in the way I thought I would be in high school. That way didn't fit me. I'm not a medical-minded person and I hate needles. I'm not that person and that's the person I would have to have been to go into research the way I first envisioned. I'm a prayer warrior. I'm a person that talks to God, a lot, and I'm not always nice about it. I'm blunt honest. I cry. I get angry. I'm damned persistent and I say "hell" and "damn" and I know as long as I'm honest God can handle my language because that's as rough as I get and He knows when I'm done and calm down I'll apologize. As a teenager grieving Lou I didn't sugarcoat my prayers and God was big enough to handle me and not strike me with lightning and I learned He can handle honesty...it's not being honest with Him that He has a problem with. So I pray for cancer researchers. A lot. Melanoma researchers in particular. A lot. I pray for those fighting melanoma. A lot. I see answers happening. A lot. Not because of me but because God is rallying pray-ers and answering the prayers He's receiving. A lot. He can't answer prayers that don't get prayed. And I've learned and relearned that the prayers aren't always answered to my specifications but God knows what He's doing even if I don't.
Being a pray-er with melanoma has opened doors where I can use my love of writing. Life is pulling together and good comes from bad. And because we don't live our lives in segments, church spills over into melanoma and melanoma spills over into church and family is in the mix and the dream is there and being lived and God is over it all. Whew!
You know something funny? My melanoma world is the only world where I actually write. I don't write my sermons unless they are for a wedding or a funeral. But it all overlaps nonetheless. After all this time God is honoring the dream He gave me. It took a little book to open my eyes and help me see how.
Every one of us has a God given dream. Every one. I do so believe that. And it's a grand dream and it's a dream only you can fulfill in the way you were meant to fulfill it. You have a lifetime, just like the rest of us, to live it. So don't let fear or giants or cancer or particularly melanoma or anything else stop you. The mountains are going to be there but they are not bigger than the God Who placed that dream inside you. The fear isn't bigger. The melanoma isn't bigger. The dream is meant to be pursued and lived with the giants watching. Push through them. Pray them down to size. Expect surprises. Expect God to work. Wherever you are God can work. If you're in the hospital hooked to tubes and needles undergoing treatment, God is still at work using you and He still wants you to live the dream He gave you, even if it doesn't look like what you first dreamed. The thing is, you have to want that too. God may give us the dream but He never forces us to live it. That's our own choice.
God is God. Everywhere for all time. The state of our health and the places we find ourselves are no obstacles for the God of the Universe. And He still is the Author and Creator of us and our dreams.
As I write this, I think Lou is looking at me, reading what I write and being proud.
Her death helped shape me as much as her life did. Cancer didn't have the last word then and it doesn't now.
And dreams don't die just because cancer may become part of our own life. Our dreams may look different than they once did, but they can still be pursued and lived. Cancer doesn't kill our dreams. It doesn't have that kind of power unless we give it that power. And we don't have to do that. At all. Ever.
And I am forever grateful.
Thursday, April 19, 2012
Those Three Little Words We Love To Hear In Melaland
I love you
You've got this
Be a blessing
Praying for you
God is able
Believe in miracles
Hold onto hope
Keep the faith
I love you
I'm with you
Peace be still
Labs are good
Scans are clear
You're soooooo bor-ing
Good to go
Be a blessing
You are NED
I love you
Treatment is working
Tumors are stable
Tumors are shrinking
Tumors are gone
You are NED
I love you
There is hope
Be a blessing
God's holding you
Your fight's won
Welcome Home Child
Life is good
LIFE Is Good
You're eternally NED
I love you
Thank You, Lord
You've got this
Be a blessing
Praying for you
God is able
Believe in miracles
Hold onto hope
Keep the faith
I love you
I'm with you
Peace be still
Labs are good
Scans are clear
You're soooooo bor-ing
Good to go
Be a blessing
You are NED
I love you
Treatment is working
Tumors are stable
Tumors are shrinking
Tumors are gone
You are NED
I love you
There is hope
Be a blessing
God's holding you
Your fight's won
Welcome Home Child
Life is good
LIFE Is Good
You're eternally NED
I love you
Thank You, Lord
Wednesday, April 18, 2012
any articles stating benenfits from tanning bed//money spent on tanning in us
Where do I begin? From my vantage point the answers are obvious. But I like to be helpful instead of mean. Since there are, obviously, people who want articles stating the benefits from tanning beds, and "any" article will do, allow me to come running to assist.
Come on, you didn't really think I'd do that, did you? Really? Seriously? Give me a break! Plug that term in any search engine and you're going to get a barrage of articles stating all kinds of benefits. Depending on what kind of benefit you're looking for...sex appeal, health, fighting depression and psoriasis, whitening your teeth, and getting your recommended dose of vitamin D, to name some, you will find articles tailored for every need. Now, look at the sources for all this valuable information. Can we say propaganda? They come from the tanning industry. Oh, my favorite does come from Dr. (and I use the term loosely) Joseph Mercola of "Land of Oz" fame and he has a fortune. Pay attention, he sells tanning beds on his website. Talk about sleazy. But I've ranted about him enough on this blog-site. Do a search for him here. Do a search for tanning. I'm moving on.
Looking for articles that state the benefits of tanning beds is dangerous and the only use for these articles is to make the tanner feel better about this activity, or give youth a weapon in their arsenal when they ask Mom or Dad if they can go to a tanning salon. Or ask for their own tanning bed for their birthday. Instead of listening to people who only tell you what you want to hear and benefit financially from that gullibility, grow a spine and listen to people who will not profit from you. There are people who want you to know the truth so you can make a sound decision of whether or not to tan.
National Cancer Institute
World Health Organization
FDA
American Academy of Dermatology
Aim At Melanoma
Melanoma Research Foundation
Skin Cancer Foundation
So, just how much money is spent on tanning in the US? Good and logical question.
The latest figures I could find come from the American Academy of Dermatology, "In 2010, the indoor tanning industry’s revenue is estimated to be $2.6 billion." Since the activity is increasing, those numbers are higher, in 2012, than this. Inching towards $3 billion is a lot of money spent on indoor tanning alone. Let's look at other costs.
The cost to treat melanoma. This was written in 2009, before the advent of Yervoy and other newer drugs and treatment options. Yervoy costs $120,000 for four doses. Since tanning beds and melanoma are linked, we have to consider these costs when looking at the money spent on tanning. You just won't be billed by your favorite tanning salon.
When looking at the money spent on tanning we also have to look at what a funeral costs. See, that tanning bed experience may well end up costing you your life. Even the cheapest funeral costs a few thousand dollars.
Before tanning, please consider ALL the costs associated with it. When you lay down in that tanning bed and pull the lid down look into the future and envision someone pulling the lid down over you in your coffin. Consider the full cost of that on yourself and your family.
Now, do you really think the cost of that tan is money well spent?
Love the skin you're in. Don't kill it.
No matter what color your skin is: protect it, cherish it, be smart with it. Your skin can't talk and tell you how to look after it. It's counting on you and so are the people in your life.
There are no genuine benefits from tanning beds. There is far more than money involved in tallying up the costs of using them.
If you want to hear about the real costs of tanning beds, talk with people who have buried their children who died far too young and they died from tanning in a tanning bed and getting melanoma.
I promise you, they would love to be grateful to have their children here and tanning beds burned.
Come on, you didn't really think I'd do that, did you? Really? Seriously? Give me a break! Plug that term in any search engine and you're going to get a barrage of articles stating all kinds of benefits. Depending on what kind of benefit you're looking for...sex appeal, health, fighting depression and psoriasis, whitening your teeth, and getting your recommended dose of vitamin D, to name some, you will find articles tailored for every need. Now, look at the sources for all this valuable information. Can we say propaganda? They come from the tanning industry. Oh, my favorite does come from Dr. (and I use the term loosely) Joseph Mercola of "Land of Oz" fame and he has a fortune. Pay attention, he sells tanning beds on his website. Talk about sleazy. But I've ranted about him enough on this blog-site. Do a search for him here. Do a search for tanning. I'm moving on.
Looking for articles that state the benefits of tanning beds is dangerous and the only use for these articles is to make the tanner feel better about this activity, or give youth a weapon in their arsenal when they ask Mom or Dad if they can go to a tanning salon. Or ask for their own tanning bed for their birthday. Instead of listening to people who only tell you what you want to hear and benefit financially from that gullibility, grow a spine and listen to people who will not profit from you. There are people who want you to know the truth so you can make a sound decision of whether or not to tan.
National Cancer Institute
World Health Organization
FDA
American Academy of Dermatology
Aim At Melanoma
Melanoma Research Foundation
Skin Cancer Foundation
So, just how much money is spent on tanning in the US? Good and logical question.
The latest figures I could find come from the American Academy of Dermatology, "In 2010, the indoor tanning industry’s revenue is estimated to be $2.6 billion." Since the activity is increasing, those numbers are higher, in 2012, than this. Inching towards $3 billion is a lot of money spent on indoor tanning alone. Let's look at other costs.
The cost to treat melanoma. This was written in 2009, before the advent of Yervoy and other newer drugs and treatment options. Yervoy costs $120,000 for four doses. Since tanning beds and melanoma are linked, we have to consider these costs when looking at the money spent on tanning. You just won't be billed by your favorite tanning salon.
When looking at the money spent on tanning we also have to look at what a funeral costs. See, that tanning bed experience may well end up costing you your life. Even the cheapest funeral costs a few thousand dollars.
Before tanning, please consider ALL the costs associated with it. When you lay down in that tanning bed and pull the lid down look into the future and envision someone pulling the lid down over you in your coffin. Consider the full cost of that on yourself and your family.
Now, do you really think the cost of that tan is money well spent?
Love the skin you're in. Don't kill it.
No matter what color your skin is: protect it, cherish it, be smart with it. Your skin can't talk and tell you how to look after it. It's counting on you and so are the people in your life.
There are no genuine benefits from tanning beds. There is far more than money involved in tallying up the costs of using them.
If you want to hear about the real costs of tanning beds, talk with people who have buried their children who died far too young and they died from tanning in a tanning bed and getting melanoma.
I promise you, they would love to be grateful to have their children here and tanning beds burned.
Tuesday, April 17, 2012
i am sure i have melanoma
is vanity worth it
why dont people take melanoma seriously
Search terms that led someone to this blog and they all play into each other. So often we don't take melanoma seriously for two predominant reasons, I believe: One, we don't understand what it really is, and, two, even when we do understand it, we don't think it can ever happen to us. To me. Then, when we start to realize it actually can happen to me, even if we still really don't understand what it is, we can start to wonder if our vanity is worth the risk we're taking? Is that sexy tan worth the risk, whether we get that glorious look via Sol or tanning bed? Is it better to hang on to a worrisome, ugly place on our bodies or have it removed and be...egads...scarred? Is my preconceived idea of my "beauty" and "worth" worth the risk to hang on to it at all costs? Even if the cost is my life?
The biggest question you may ever to have to ask yourself is, "Do I want to live or die?"
See, this is for the person who is now at the place of saying, "i am sure i have melanoma." My heart breaks for the person who plugged in that search term looking for answers, advice, and hope. If you are a person who looks in the mirror and says that, then that tells me a great deal. It tells me that you know in your gut that you have this disease, BUT you haven't gone to a doctor yet, had your worrisome place removed, and had your fears confirmed. You're hoping against hope that this all will just go away. But it isn't. It tells me you're looking for the easy answer and easy way out and are hoping to find what you're looking for on the Internet. Right now the Internet is the worst place to be looking because you'll run up against all kinds of "help" and "answers" but what you need is to get offline and get into a doctor's office.
I've been where you are. I was sure I had melanoma. I'm not going to rehash my story; it's scattered throughout this blog-site. What I want to do is tell you what to do. I know you're scared. I know. But while you're being scared, melanoma is growing and spreading. If your gut is right and if you really do have it, it's growing and must be dealt with. Again, do you want to live or die? The sooner you get this taken care of, the better your chances. The longer you wait, IF you have melanoma, the worse your chances are getting. The longer and harder the fight you are facing. I'm not going to sugarcoat this because it is not in your best interest that I do that and it's not in your family's best interest either. If you are too scared to do this on your own steam, then think of the person or people you love the most in the world and do this for them. Give your relationship a fighting chance. Choose life.
I'm going to give you the benefit of me looking back on my journey, seeing the doors that God opened, and what I learned from that.
If you are sure you have melanoma that tells me you have a mole, bump, something on your body that you've been keeping an eye on and it has been changing and has now changed to the point you're scared and you know. If this place is also bleeding at all, then you need to be seen IMMEDIATELY! I cannot stress that enough. You don't have time to wait for an appointment in two or three months.
I had an appointment to be seen by a dermatologist in late September 2008 but my awful mole started bleeding July 3rd, 2008 while I was a student at Duke. I was over two hours from home and doctor so I went to a Duke Urgent Care there in Durham. That put me in the Duke system immediately so when my results came back "melanoma" the doctor at Urgent Care had already made me an appointment with an oncologist at Duke. Because he was in the Duke system, himself, he knew that Duke has excellent melanoma specialists and made my appointment with one of them. I would NEVER have known to do that!
So, piece of advice based on this: find the nearest hospital/center to you that has melanoma specialists. If you're going to be on the Internet, this is what you need to do. Aim at Melanoma has an excellent resource to help you find the facility nearest you. Even if it means you may have to drive an hour or two or so, you're worth it and you need to go ahead and get in the system right for you. Now, does that facility have any kind of Urgent Care facility that you can go to, without an appointment, be seen, have your place removed and pathed? If you don't like that idea, the facility will have a dermatology department that has melanoma specialists on staff. Find the number for that department, you can also, probably, find their dermatologists who specialize in melanoma. Call that doctor's office, tell them what's happening and insist on being seen asap. If the person at the desk is uncooperative (and that happens) ask to speak with a nurse or PA. If you are still put off for over a couple of weeks, then get yourself to that facility's ER and get it removed. Where there's a will there's a way and I've just given you three options for getting this taken care of promptly. The bottom line here is, go ahead and take steps to get you in the right medical system from the beginning. If you do, indeed, have melanoma, then you want to be in the hands of specialists from the very beginning. That is crucial. Vital. Important to your life. I cannot stress this enough.
You are now on the road to dealing with what is on your plate. You're going to need support for the days, months, and years ahead. Plug into the melanoma community online. We're growing and you can find us on Facebook particularly. You can plug in via any of the blogs I have linked to or Melanoma Prayer Center. Don't try and do this alone and don't depend on your family and friends to provide all the support you need. Unless melanoma is part of their own journey, they won't understand your new world. You need us.
Making that statement, "i am sure i have melanoma" is kind of like the person who finally looks in the mirror and says, "i am an alcoholic." Facing the future and taking steps to correct what's going on begins with facing the present.
"i am sure i have melanoma" is being at the point of saying i am taking this seriously and vanity isn't worth it.
"i am sure i have melanoma" is the beginning of facing that question "Do I want to live or die?"
"i am sure i have melanoma" is taking the step to choose life. It will become a pale, not tanned, life. It will become a life that sees some scars. It will become a life that forces you to undergo tests and procedures you never knew existed, and maybe treatments and trials. And it will become a life that understands, in a way you never truly understood before, just how precious your life really is, how valuable you are, and that your worth is not tied up in your looks.
Making the statement, "i am sure i have melanoma" means you are alive to make that statement and take that next step.
And I am grateful.
Go with God.
Be grateful. Blessings on your journey. Amen!
why dont people take melanoma seriously
Search terms that led someone to this blog and they all play into each other. So often we don't take melanoma seriously for two predominant reasons, I believe: One, we don't understand what it really is, and, two, even when we do understand it, we don't think it can ever happen to us. To me. Then, when we start to realize it actually can happen to me, even if we still really don't understand what it is, we can start to wonder if our vanity is worth the risk we're taking? Is that sexy tan worth the risk, whether we get that glorious look via Sol or tanning bed? Is it better to hang on to a worrisome, ugly place on our bodies or have it removed and be...egads...scarred? Is my preconceived idea of my "beauty" and "worth" worth the risk to hang on to it at all costs? Even if the cost is my life?
The biggest question you may ever to have to ask yourself is, "Do I want to live or die?"
See, this is for the person who is now at the place of saying, "i am sure i have melanoma." My heart breaks for the person who plugged in that search term looking for answers, advice, and hope. If you are a person who looks in the mirror and says that, then that tells me a great deal. It tells me that you know in your gut that you have this disease, BUT you haven't gone to a doctor yet, had your worrisome place removed, and had your fears confirmed. You're hoping against hope that this all will just go away. But it isn't. It tells me you're looking for the easy answer and easy way out and are hoping to find what you're looking for on the Internet. Right now the Internet is the worst place to be looking because you'll run up against all kinds of "help" and "answers" but what you need is to get offline and get into a doctor's office.
I've been where you are. I was sure I had melanoma. I'm not going to rehash my story; it's scattered throughout this blog-site. What I want to do is tell you what to do. I know you're scared. I know. But while you're being scared, melanoma is growing and spreading. If your gut is right and if you really do have it, it's growing and must be dealt with. Again, do you want to live or die? The sooner you get this taken care of, the better your chances. The longer you wait, IF you have melanoma, the worse your chances are getting. The longer and harder the fight you are facing. I'm not going to sugarcoat this because it is not in your best interest that I do that and it's not in your family's best interest either. If you are too scared to do this on your own steam, then think of the person or people you love the most in the world and do this for them. Give your relationship a fighting chance. Choose life.
I'm going to give you the benefit of me looking back on my journey, seeing the doors that God opened, and what I learned from that.
If you are sure you have melanoma that tells me you have a mole, bump, something on your body that you've been keeping an eye on and it has been changing and has now changed to the point you're scared and you know. If this place is also bleeding at all, then you need to be seen IMMEDIATELY! I cannot stress that enough. You don't have time to wait for an appointment in two or three months.
I had an appointment to be seen by a dermatologist in late September 2008 but my awful mole started bleeding July 3rd, 2008 while I was a student at Duke. I was over two hours from home and doctor so I went to a Duke Urgent Care there in Durham. That put me in the Duke system immediately so when my results came back "melanoma" the doctor at Urgent Care had already made me an appointment with an oncologist at Duke. Because he was in the Duke system, himself, he knew that Duke has excellent melanoma specialists and made my appointment with one of them. I would NEVER have known to do that!
So, piece of advice based on this: find the nearest hospital/center to you that has melanoma specialists. If you're going to be on the Internet, this is what you need to do. Aim at Melanoma has an excellent resource to help you find the facility nearest you. Even if it means you may have to drive an hour or two or so, you're worth it and you need to go ahead and get in the system right for you. Now, does that facility have any kind of Urgent Care facility that you can go to, without an appointment, be seen, have your place removed and pathed? If you don't like that idea, the facility will have a dermatology department that has melanoma specialists on staff. Find the number for that department, you can also, probably, find their dermatologists who specialize in melanoma. Call that doctor's office, tell them what's happening and insist on being seen asap. If the person at the desk is uncooperative (and that happens) ask to speak with a nurse or PA. If you are still put off for over a couple of weeks, then get yourself to that facility's ER and get it removed. Where there's a will there's a way and I've just given you three options for getting this taken care of promptly. The bottom line here is, go ahead and take steps to get you in the right medical system from the beginning. If you do, indeed, have melanoma, then you want to be in the hands of specialists from the very beginning. That is crucial. Vital. Important to your life. I cannot stress this enough.
You are now on the road to dealing with what is on your plate. You're going to need support for the days, months, and years ahead. Plug into the melanoma community online. We're growing and you can find us on Facebook particularly. You can plug in via any of the blogs I have linked to or Melanoma Prayer Center. Don't try and do this alone and don't depend on your family and friends to provide all the support you need. Unless melanoma is part of their own journey, they won't understand your new world. You need us.
Making that statement, "i am sure i have melanoma" is kind of like the person who finally looks in the mirror and says, "i am an alcoholic." Facing the future and taking steps to correct what's going on begins with facing the present.
"i am sure i have melanoma" is being at the point of saying i am taking this seriously and vanity isn't worth it.
"i am sure i have melanoma" is the beginning of facing that question "Do I want to live or die?"
"i am sure i have melanoma" is taking the step to choose life. It will become a pale, not tanned, life. It will become a life that sees some scars. It will become a life that forces you to undergo tests and procedures you never knew existed, and maybe treatments and trials. And it will become a life that understands, in a way you never truly understood before, just how precious your life really is, how valuable you are, and that your worth is not tied up in your looks.
Making the statement, "i am sure i have melanoma" means you are alive to make that statement and take that next step.
And I am grateful.
Go with God.
Be grateful. Blessings on your journey. Amen!
Monday, April 16, 2012
Every Day Is Melanoma Awareness Day
May is "Melanoma Awareness Month" and already a popular question on Facebook is "What are you doing to promote awareness in May?" I've seen a few sites that call May "Skin Cancer Awareness Month" with Monday May 7th being set aside specifically for melanoma. Whatever.
For many of us all day, every day, is Melanoma Awareness Day. I mean, really now, once we get it we can't get rid of it. Even if we manage to keep it at bay for decades, it doesn't leave our minds and prayers. It doesn't leave our families minds either. We see our doctors so much we practically exchange birthday cards. Strangers give us odd looks when they catch us getting a little too close for comfort to get a better look at a place on their skin we spotted from halfway across the store or parking lot. And heaven better help the person who tells one of us they go to tanning beds. Let's face it, how many of us wish demolishing a business was legal so we could take out our anger, aggression, and attirude on local tanning salons? If they have license to kill, why can't we have license to bust a few bricks without hurting anyone? Oh well. So we take the high road.
That high road is a busy place though it is a road no one wants to travel. Let me tell you about some of the people I travel that road with without calling names. First, I travel that road with women and men who have buried their children who died from melanoma. I know some of them well in cyberspace and I stand in awe of them. Because every day is Melanoma Awareness Day, they work tirelessly so nobody else need feel their pain in an "in your face and family" kind of way. They choose, every day, to honor their child's fight to the finish by keeping their private pain on display for all to see and, hopefully, learn from. They work in melanoma-specific organizations, work on legislation, travel and speak, write, they do everything can possibly think of and none of it will bring back their child. So they do what they can to keep you from burying yours.
I travel this road with men and women who have buried their spouses who died from melanoma and I stand in awe of their resilience as they live with broken hearts. Many have buried their spouses way too young and they are left to raise young children alone. Because every day is Melanoma Awareness Day, they get out of bed and carry on because they have to. Life must go on and they have responsibilities that won't wait. They choose, every day, to get out of bed and honor their love by doing many of the same things parents do. It is, often spouses though, who establish melanoma-specific organizations that the rest of us support. Not always, but often. None of it, though, will bring their spouse back. So they do what they can to keep you from burying yours.
I travel this road with children of all ages who have buried their parents who died from melanoma and I stand in awe of how they struggle and cope with a pain that has broken their hearts. Just because "burying ones' parents" is the "natural order" of the universe doesn't make it any less real and painful. It doesn't make it any less life-changing. Because every day is Melanoma Awareness Day, they remember the person who brought them in this world, raised them, and loved them to the end and died a very horrible, brutal death. All deaths caused by cancer are excruciating, but the multiple tumors, everywhere in the body, associated with melanoma are beyond belief. Because of what they witness and is now part of their genetics and family history, they walk the walks and raise money and awareness as they can. They raise their children to do everything they can to prevent melanoma from adding more branches to the family tree.
I travel this road with siblings who have buried a brother or a sister. I travel this road with other family members and friends. Each person's level of pain is different. Each person will celebrate Melanoma Awareness Day every day their own way. But they never forget and because they never forget, but carry their loved one with them where they go, they are a silent force to be reckoned with. People often misjudge the depth of their pain and that is a mistake. Especially if you engage in threatening behaviors that can lead to your own case of melanoma.
I travel this road with warriors. People of all races, ages, and both genders who deal with melanoma. Many warriors are parents who battle with and for their young children and teenagers. They are every bit as much a warrior as me. Many are far more so. I stand in awe of their inner strength. They truly do the impossible. Many are spouses of warriors who also battle with and for their wife or husband. They, too, are warriors, who find themselves living vows in ways they never thought they'd have to. And they are more than rising to the occasion. Many are children and siblings of warriors. Grown children who battle with and for a parent are increasing in number. Many have their own children at home and also have to take care of Mom or Dad who battles melanoma. Because every day is Melanoma Awareness Day these are the people supporting, in superhuman ways, those of us who bodily live with the beast. These are the mama-bears and papa-bears nobody better cross. At all. These are also the angels that make the journey on this road bearable.
I travel this road with fellow warriors of all stages who have melanoma. We're an awesome group of people and just thinking about them fills my eyes with tears and my heart with love. We are a rainbow of people, battle scarred but not battle weary. We've always got fight in us and we're not going down without one helluva one. We're tough as nails and soft as marshmallows. We'll tell you where to get off but we'll also tell you where to get on. We don't suffer fools gladly but we'll suffer what's on our plate because it's there. We have compassion but don't tell us what you "can't do." We don't like whining. Unless it's our own and it's a well-deserved pity party. Even then we don't like it and apologize for it, but we work through it and move on. Because every day is Melanoma Awareness Day for us we work through what we're feeling and move on. We may move on from a good place or we may be in a really hard place, but we stay on the move. We've got lives to lead, battles to fight, awareness to spread, and the world to conquer.
Because this is so personal to us and because everyone we see has skin, we who live with melanoma every day are always on the lookout for fresh, innovative ways to celebrate Melanoma Awareness Day. It will begin, in earnest, next month. But people don't just have skin one month a year. We don't just have melanoma one month a year either. People who have buried loved ones who died from melanoma don't grieve one month a year. Ever.
I'm something of a renegade. I can only live in a man-made box but for so long. As all cancers have a ribbon and are known by a particular color, well, melanoma's color is black. We're the Black C. You'll be seeing a lot of black ribbons during May.
God's been capturing my imagination with rainbows lately. Susan at Jilly's Jems has designed me a bracelet and necklace that twines a double rainbow and the necklace has a cross on it. Both pieces are predominately rainbows but there are a few black beads worked in to acknowledge melanoma and her jewelry always has a sapphire bead to acknowledge her daughter's battle with melanoma.
The rainbow is a symbol of hope and I wish the rainbow was what people thought of when thinking of melanoma. God's at work spreading hope on this road. I designed this image today to try and capture what I'm feeling. The bottom line of the text is slightly askew, but so am I. There's nothing perfect on this melanoma journey down melanoma road. Except the God Who journeys with us all.
Every day.
And I am grateful. Every day.
For many of us all day, every day, is Melanoma Awareness Day. I mean, really now, once we get it we can't get rid of it. Even if we manage to keep it at bay for decades, it doesn't leave our minds and prayers. It doesn't leave our families minds either. We see our doctors so much we practically exchange birthday cards. Strangers give us odd looks when they catch us getting a little too close for comfort to get a better look at a place on their skin we spotted from halfway across the store or parking lot. And heaven better help the person who tells one of us they go to tanning beds. Let's face it, how many of us wish demolishing a business was legal so we could take out our anger, aggression, and attirude on local tanning salons? If they have license to kill, why can't we have license to bust a few bricks without hurting anyone? Oh well. So we take the high road.
That high road is a busy place though it is a road no one wants to travel. Let me tell you about some of the people I travel that road with without calling names. First, I travel that road with women and men who have buried their children who died from melanoma. I know some of them well in cyberspace and I stand in awe of them. Because every day is Melanoma Awareness Day, they work tirelessly so nobody else need feel their pain in an "in your face and family" kind of way. They choose, every day, to honor their child's fight to the finish by keeping their private pain on display for all to see and, hopefully, learn from. They work in melanoma-specific organizations, work on legislation, travel and speak, write, they do everything can possibly think of and none of it will bring back their child. So they do what they can to keep you from burying yours.
I travel this road with men and women who have buried their spouses who died from melanoma and I stand in awe of their resilience as they live with broken hearts. Many have buried their spouses way too young and they are left to raise young children alone. Because every day is Melanoma Awareness Day, they get out of bed and carry on because they have to. Life must go on and they have responsibilities that won't wait. They choose, every day, to get out of bed and honor their love by doing many of the same things parents do. It is, often spouses though, who establish melanoma-specific organizations that the rest of us support. Not always, but often. None of it, though, will bring their spouse back. So they do what they can to keep you from burying yours.
I travel this road with children of all ages who have buried their parents who died from melanoma and I stand in awe of how they struggle and cope with a pain that has broken their hearts. Just because "burying ones' parents" is the "natural order" of the universe doesn't make it any less real and painful. It doesn't make it any less life-changing. Because every day is Melanoma Awareness Day, they remember the person who brought them in this world, raised them, and loved them to the end and died a very horrible, brutal death. All deaths caused by cancer are excruciating, but the multiple tumors, everywhere in the body, associated with melanoma are beyond belief. Because of what they witness and is now part of their genetics and family history, they walk the walks and raise money and awareness as they can. They raise their children to do everything they can to prevent melanoma from adding more branches to the family tree.
I travel this road with siblings who have buried a brother or a sister. I travel this road with other family members and friends. Each person's level of pain is different. Each person will celebrate Melanoma Awareness Day every day their own way. But they never forget and because they never forget, but carry their loved one with them where they go, they are a silent force to be reckoned with. People often misjudge the depth of their pain and that is a mistake. Especially if you engage in threatening behaviors that can lead to your own case of melanoma.
I travel this road with warriors. People of all races, ages, and both genders who deal with melanoma. Many warriors are parents who battle with and for their young children and teenagers. They are every bit as much a warrior as me. Many are far more so. I stand in awe of their inner strength. They truly do the impossible. Many are spouses of warriors who also battle with and for their wife or husband. They, too, are warriors, who find themselves living vows in ways they never thought they'd have to. And they are more than rising to the occasion. Many are children and siblings of warriors. Grown children who battle with and for a parent are increasing in number. Many have their own children at home and also have to take care of Mom or Dad who battles melanoma. Because every day is Melanoma Awareness Day these are the people supporting, in superhuman ways, those of us who bodily live with the beast. These are the mama-bears and papa-bears nobody better cross. At all. These are also the angels that make the journey on this road bearable.
I travel this road with fellow warriors of all stages who have melanoma. We're an awesome group of people and just thinking about them fills my eyes with tears and my heart with love. We are a rainbow of people, battle scarred but not battle weary. We've always got fight in us and we're not going down without one helluva one. We're tough as nails and soft as marshmallows. We'll tell you where to get off but we'll also tell you where to get on. We don't suffer fools gladly but we'll suffer what's on our plate because it's there. We have compassion but don't tell us what you "can't do." We don't like whining. Unless it's our own and it's a well-deserved pity party. Even then we don't like it and apologize for it, but we work through it and move on. Because every day is Melanoma Awareness Day for us we work through what we're feeling and move on. We may move on from a good place or we may be in a really hard place, but we stay on the move. We've got lives to lead, battles to fight, awareness to spread, and the world to conquer.
Because this is so personal to us and because everyone we see has skin, we who live with melanoma every day are always on the lookout for fresh, innovative ways to celebrate Melanoma Awareness Day. It will begin, in earnest, next month. But people don't just have skin one month a year. We don't just have melanoma one month a year either. People who have buried loved ones who died from melanoma don't grieve one month a year. Ever.
I'm something of a renegade. I can only live in a man-made box but for so long. As all cancers have a ribbon and are known by a particular color, well, melanoma's color is black. We're the Black C. You'll be seeing a lot of black ribbons during May.
God's been capturing my imagination with rainbows lately. Susan at Jilly's Jems has designed me a bracelet and necklace that twines a double rainbow and the necklace has a cross on it. Both pieces are predominately rainbows but there are a few black beads worked in to acknowledge melanoma and her jewelry always has a sapphire bead to acknowledge her daughter's battle with melanoma.
The rainbow is a symbol of hope and I wish the rainbow was what people thought of when thinking of melanoma. God's at work spreading hope on this road. I designed this image today to try and capture what I'm feeling. The bottom line of the text is slightly askew, but so am I. There's nothing perfect on this melanoma journey down melanoma road. Except the God Who journeys with us all.
Every day.
And I am grateful. Every day.
Friday, April 13, 2012
Since God Is In Control, Why Are Governments, Insurance, and Medicine Jockeying For Position?
Yesterday, as I write, three things converged that have left me feeling like I'm holding a crystal ball and I don't like the "future" I'm seeing.
First I opened my email. When a comment is left on this blog, I get an email notifying me and the comment is in the email. My good friend, Anonymous, had left a very nice remark after a post and it included these words, "Your words are always what is needed, be it balm or fire." We Methodists are rarely told we have words of "fire" but I like that! You know we do have the Cross and Flame thing going on and we are a Pentecostal people, so "fire" is appropriate and good. Plus, red is my favorite color and yesterday I had on my red glasses, red shirt, and red high tops. I was feeling it!
Second I logged on to Facebook to see what was happening and that's when I looked and found a crystal ball in my hands. The news from Australia wasn't good. At all! The bright spot was the people there were already talking of organizing to stop what the government had decided. I'll come back to that in just a moment. Hang on.
Third, that news from Australia prompted me to initiate what became a very good and insightful (for me anyways) discussion with a friend.
I've been turning this post over and over in my mind, praying over it, revising and editing it before ever sitting down to write it. But that time has come. Before I really get into this I feel a need to make something about myself perfectly clear: I'm an uninsured American with melanoma, stage 3b. I don't want anyone to read what follows and think I'm sitting pretty with great insurance coverage and a boat load of money in the bank, and am, therefore, unaffected. Nothing could be further from the truth. I don't like to talk about my finances and this paragraph is not up for discussion. It is what it is and what I say in this paragraph is all I'm going to say about my personal insurance, or lack, thereof. When I started this melanoma trek, I had great coverage. It had carried me through a nerve block and two rounds of physical therapy in 1999-2000 to deal with my RSD. When melanoma reared its head in 2008, my coverage saw me through my scans, surgeries and another two rounds of PT and bought my compression sleeves and gloves. I was dropped in late 2010 and am untouchable now. That's not a great place for a stage 3b melanoma person to find herself in. So, now, I pay out of pocket for what happens to me at Duke. So far, it has been appointments, blood work, and chest X-Rays. Manageable. When it becomes more than that, I'm going to have to seriously look at what I can and cannot afford. There isn't a boat load of money or a hefty savings account to tap and another loan is out of the question. The expensive treatments that exist for stage 4 will become quite a personal issue. I think that's why the news from Australia has hit so hard and why I feel like I'm holding a crystal ball. And I want to smash it. And then I want to glue it together and smash it again.
This is copied/pasted from the founder of sunbedban.com's Facebook page yesterday, "BREAKING NEWS Australia: The PBAC has knocked back funding for a life-saving melanoma treatment. Patients from next week will now have to pay $120,000 if they want this potentially life saving treatment called YERVOY." He provides a link to the TV report of this but that link only works in Australia apparently. (PBAC=Pharmaceutical Benefits Advisory Committee). Jay Allen is a trusted source of information, is Australian and is there on the spot, is a melanoma survivor, and is working tirelessly getting tanning beds banned all over his country. And he is being successful, I might add!
Australia is known as The Melanoma Capital of the world. Not a good distinction to be sure. They, like other countries, are seeing a decline in other cancers and a spike in melanoma. Some doctors are beginning to say there is a melanoma epidemic now and it is on track for being the deadliest of all cancers, worldwide, by 2022. Yervoy is a fairly recent treatment and is showing great promise. It is also greatly expensive. That $120,000 is roughly what 4 doses cost. That's not pocket change for most people. And this event has me greatly alarmed. If Australia is taking this step, I can see other countries taking notice and following their lead, somehow, at some point in the future.
This will look differently in each country. Some countries may require some amount as a deposit before a person can take costly, potentially life saving treatments. If a patient can't come up with the money, then no treatment. That will mean certain death. In some countries, insurance companies call the shots right now. Those companies exist to make money. Melanoma drains money. I can see them dropping more and more clients as they advance to the later stages of the disease. I can also see some of them requiring larger and larger co-pays and raising the premiums once melanoma is diagnosed. In countries where insurance calls medical shots, I can see more and more people who need insurance having to drop it themselves because they can no longer afford it, becoming uninsured. Governments will get more and more involved in medical care, as we see happening in the USA. If there are any countries where medicine still gets to call the shots, doctors will be put, more and more, into uncomfortable positions because the resources are limited, melanoma is astronomical to treat, especially as it advances, and I can see them having to literally make life-and-death decisions for their patients. Does a patient get scans or surgery they can't afford? Are they a good candidate for $100,00+ treatments? I see a vicious Pandora's Box being opened and it scares the hell out of me.
To give you an idea of what melanoma costs, I refer you to this article. It was written in 2009, before the advent of Yervoy, Zelboraf, and other new treatments, but you'll get a good idea of the costs involved.
Then, there's the cost of research which makes all this possible. And that's not cheap, either. Melanoma does though get very few research dollars compared to other cancers. Researchers have done a great deal with so little. Read this article and scroll down to the table showing dollars spent. This is just one of a few entities that fund and carry out melanoma research, but you'll get an idea of what gets spent overall. This article will give you an idea of the overall cost of cancer. This is also interesting reading about why cancer costs so much and it does mention melanoma.
As melanoma soars, that's people soaring. Not just numbers. People. Maybe you. Maybe someone who is making decisions right now that will affect multitudes of people. Maybe someone kin to them. With the projections being what they are, and the ages getting lower and lower, few families will be left untouched. People making policies need to remember that.
As people soar, "entities" need to remember that it is people who soar. And entities, like government, insurance companies, and medicine, need to remember that they themselves really aren't "entities," they are people, too. Believe it or not, they are, indeed, people. They need to remember that. The policies they make, whether they be in government, insurance, or in medicine, will affect people. People who vote and purchase. People they live with and work with. People they see in the mirror.
People with pockets and many of those pockets are shallow. Few have deep enough pockets to absorb the costs. Right now we are faced with melanoma diagnoses rising through the roof (and side note: many new diagnoses are already stage 4 and arrive in melaworld already expensive to treat. They are scared, often young with young families, and guess what? They want to LIVE!). We are faced with rising costs of treatment. Yes, it's far cheaper to treat when caught early and yes we have GOT to do everything possible to come up with treatments that stop it in its tracks early, but we cannot do that at the expense of those of us further along this road. And we are faced with these rising costs being passed along to governments and/or insurance companies. Hospitals can only absorb so much of the costs if we want them to stay on top of the newest technologies and treatments.
So much is out of our hands! We, the patients, know what we want and need and someone else calls the shots. Many of the shots are based on costs and I fear melanoma patients, over the course of time, will become something of a triage. Medicine will save those who appear to be the best candidates and not save the rest. Because Australia made the decision they made yesterday, I really fear the road ahead as the road winds around the world. I see it getting worse before it gets better.
People will have to come up with large sums to stand a chance and those sums will be hard to come by. So I'm wondering if there's a way to prevent this? Is there a way for the powers that be around the world to come together, for the good of the people, and work together and not put profit above people?
Is there a way for research to stretch those dollars further? Is there a way for drug companies to hold down costs and hold down the costs they pass along to insurance companies? Is there a way for insurance companies to convince their stockholders that huge profits aren't in their best interests, but keeping costs down and people enrolled at affordable rates is more humanitarian and will serve them better in the end? Is there a way for medicine to be as effective but cheaper? Is there a way for governments to really give budgets a fair look and truly cut pork. Can government officials, for once, stop working to protect their own best interests, stop working to get elected and stay elected, stop working to make their "angels" and PACs happy...and do what's in the best interests of their country and its citizens?
Can these "entities" that make life and death decisions realize they are people who work with and for people? It has taken us a long time to get in this mess and I see no easy fixes on the horizon. There will be no one answer that makes billions of people happy and fits every situation.
Is there a way for research, medicine, insurance, and governments to work together with the good of the people in their hearts and minds? I'd like to think it's possible. But right now, to be honest, the thought of that happening makes me shake my head, laugh, and say it's impossible. Too much greed involved. Too much power up for grabs.
Too many lives at stake. And tied to the stake. Who's going to light the fire? Or who's going to step forward and start loosening the chains that bind them?
I don't like the potential I see looming on the horizon. I don't like the decisions that will have to be made and I don't like the idea of who could be making those decisions anymore than I like who already makes them.
Is there a balm? Yes, but it's not me. There is a Balm in Gilead.
Is there a fire? Yes, but it's not me. It speaks from a burning bush and it says, among other things, "I have certainly seen the oppression of my people...I have heard their cries of distress....Yes, I am aware of their suffering. So I have come down to rescue them...I will be with you...I AM WHO I AM." God has always proven Himself faithful to those who are oppressed and suffering. He always comes to the rescue and is with us. He is always I AM. Always present tense. Those words spoken to Moses thousands of years ago still hold true today.
It won't be easy, but it can happen. It will take time, but it has to begin now. We have to move toward our preferred future and it will be costly. We can break the crystal ball. Who will smash it?
God. God holds the world in His hands. There are those who think they do and they are jockeying for position. Humankind has a history of trying to wrest control from God. God has yet to fully let that happen. It hasn't happened yet. It will not and cannot happen. The tide will turn. We can work with God. Or not. God has a history of standing with the least, the last, and the lost. Those of us with melanoma and who will get melanoma fall in there somewhere.
He's got the whole world in His hands and that includes governments, insurance companies, medicine, and research. It's not the other way around.
And I am grateful.
First I opened my email. When a comment is left on this blog, I get an email notifying me and the comment is in the email. My good friend, Anonymous, had left a very nice remark after a post and it included these words, "Your words are always what is needed, be it balm or fire." We Methodists are rarely told we have words of "fire" but I like that! You know we do have the Cross and Flame thing going on and we are a Pentecostal people, so "fire" is appropriate and good. Plus, red is my favorite color and yesterday I had on my red glasses, red shirt, and red high tops. I was feeling it!
Second I logged on to Facebook to see what was happening and that's when I looked and found a crystal ball in my hands. The news from Australia wasn't good. At all! The bright spot was the people there were already talking of organizing to stop what the government had decided. I'll come back to that in just a moment. Hang on.
Third, that news from Australia prompted me to initiate what became a very good and insightful (for me anyways) discussion with a friend.
I've been turning this post over and over in my mind, praying over it, revising and editing it before ever sitting down to write it. But that time has come. Before I really get into this I feel a need to make something about myself perfectly clear: I'm an uninsured American with melanoma, stage 3b. I don't want anyone to read what follows and think I'm sitting pretty with great insurance coverage and a boat load of money in the bank, and am, therefore, unaffected. Nothing could be further from the truth. I don't like to talk about my finances and this paragraph is not up for discussion. It is what it is and what I say in this paragraph is all I'm going to say about my personal insurance, or lack, thereof. When I started this melanoma trek, I had great coverage. It had carried me through a nerve block and two rounds of physical therapy in 1999-2000 to deal with my RSD. When melanoma reared its head in 2008, my coverage saw me through my scans, surgeries and another two rounds of PT and bought my compression sleeves and gloves. I was dropped in late 2010 and am untouchable now. That's not a great place for a stage 3b melanoma person to find herself in. So, now, I pay out of pocket for what happens to me at Duke. So far, it has been appointments, blood work, and chest X-Rays. Manageable. When it becomes more than that, I'm going to have to seriously look at what I can and cannot afford. There isn't a boat load of money or a hefty savings account to tap and another loan is out of the question. The expensive treatments that exist for stage 4 will become quite a personal issue. I think that's why the news from Australia has hit so hard and why I feel like I'm holding a crystal ball. And I want to smash it. And then I want to glue it together and smash it again.
This is copied/pasted from the founder of sunbedban.com's Facebook page yesterday, "BREAKING NEWS Australia: The PBAC has knocked back funding for a life-saving melanoma treatment. Patients from next week will now have to pay $120,000 if they want this potentially life saving treatment called YERVOY." He provides a link to the TV report of this but that link only works in Australia apparently. (PBAC=Pharmaceutical Benefits Advisory Committee). Jay Allen is a trusted source of information, is Australian and is there on the spot, is a melanoma survivor, and is working tirelessly getting tanning beds banned all over his country. And he is being successful, I might add!
Australia is known as The Melanoma Capital of the world. Not a good distinction to be sure. They, like other countries, are seeing a decline in other cancers and a spike in melanoma. Some doctors are beginning to say there is a melanoma epidemic now and it is on track for being the deadliest of all cancers, worldwide, by 2022. Yervoy is a fairly recent treatment and is showing great promise. It is also greatly expensive. That $120,000 is roughly what 4 doses cost. That's not pocket change for most people. And this event has me greatly alarmed. If Australia is taking this step, I can see other countries taking notice and following their lead, somehow, at some point in the future.
This will look differently in each country. Some countries may require some amount as a deposit before a person can take costly, potentially life saving treatments. If a patient can't come up with the money, then no treatment. That will mean certain death. In some countries, insurance companies call the shots right now. Those companies exist to make money. Melanoma drains money. I can see them dropping more and more clients as they advance to the later stages of the disease. I can also see some of them requiring larger and larger co-pays and raising the premiums once melanoma is diagnosed. In countries where insurance calls medical shots, I can see more and more people who need insurance having to drop it themselves because they can no longer afford it, becoming uninsured. Governments will get more and more involved in medical care, as we see happening in the USA. If there are any countries where medicine still gets to call the shots, doctors will be put, more and more, into uncomfortable positions because the resources are limited, melanoma is astronomical to treat, especially as it advances, and I can see them having to literally make life-and-death decisions for their patients. Does a patient get scans or surgery they can't afford? Are they a good candidate for $100,00+ treatments? I see a vicious Pandora's Box being opened and it scares the hell out of me.
To give you an idea of what melanoma costs, I refer you to this article. It was written in 2009, before the advent of Yervoy, Zelboraf, and other new treatments, but you'll get a good idea of the costs involved.
Then, there's the cost of research which makes all this possible. And that's not cheap, either. Melanoma does though get very few research dollars compared to other cancers. Researchers have done a great deal with so little. Read this article and scroll down to the table showing dollars spent. This is just one of a few entities that fund and carry out melanoma research, but you'll get an idea of what gets spent overall. This article will give you an idea of the overall cost of cancer. This is also interesting reading about why cancer costs so much and it does mention melanoma.
As melanoma soars, that's people soaring. Not just numbers. People. Maybe you. Maybe someone who is making decisions right now that will affect multitudes of people. Maybe someone kin to them. With the projections being what they are, and the ages getting lower and lower, few families will be left untouched. People making policies need to remember that.
As people soar, "entities" need to remember that it is people who soar. And entities, like government, insurance companies, and medicine, need to remember that they themselves really aren't "entities," they are people, too. Believe it or not, they are, indeed, people. They need to remember that. The policies they make, whether they be in government, insurance, or in medicine, will affect people. People who vote and purchase. People they live with and work with. People they see in the mirror.
People with pockets and many of those pockets are shallow. Few have deep enough pockets to absorb the costs. Right now we are faced with melanoma diagnoses rising through the roof (and side note: many new diagnoses are already stage 4 and arrive in melaworld already expensive to treat. They are scared, often young with young families, and guess what? They want to LIVE!). We are faced with rising costs of treatment. Yes, it's far cheaper to treat when caught early and yes we have GOT to do everything possible to come up with treatments that stop it in its tracks early, but we cannot do that at the expense of those of us further along this road. And we are faced with these rising costs being passed along to governments and/or insurance companies. Hospitals can only absorb so much of the costs if we want them to stay on top of the newest technologies and treatments.
So much is out of our hands! We, the patients, know what we want and need and someone else calls the shots. Many of the shots are based on costs and I fear melanoma patients, over the course of time, will become something of a triage. Medicine will save those who appear to be the best candidates and not save the rest. Because Australia made the decision they made yesterday, I really fear the road ahead as the road winds around the world. I see it getting worse before it gets better.
People will have to come up with large sums to stand a chance and those sums will be hard to come by. So I'm wondering if there's a way to prevent this? Is there a way for the powers that be around the world to come together, for the good of the people, and work together and not put profit above people?
Is there a way for research to stretch those dollars further? Is there a way for drug companies to hold down costs and hold down the costs they pass along to insurance companies? Is there a way for insurance companies to convince their stockholders that huge profits aren't in their best interests, but keeping costs down and people enrolled at affordable rates is more humanitarian and will serve them better in the end? Is there a way for medicine to be as effective but cheaper? Is there a way for governments to really give budgets a fair look and truly cut pork. Can government officials, for once, stop working to protect their own best interests, stop working to get elected and stay elected, stop working to make their "angels" and PACs happy...and do what's in the best interests of their country and its citizens?
Can these "entities" that make life and death decisions realize they are people who work with and for people? It has taken us a long time to get in this mess and I see no easy fixes on the horizon. There will be no one answer that makes billions of people happy and fits every situation.
Is there a way for research, medicine, insurance, and governments to work together with the good of the people in their hearts and minds? I'd like to think it's possible. But right now, to be honest, the thought of that happening makes me shake my head, laugh, and say it's impossible. Too much greed involved. Too much power up for grabs.
Too many lives at stake. And tied to the stake. Who's going to light the fire? Or who's going to step forward and start loosening the chains that bind them?
I don't like the potential I see looming on the horizon. I don't like the decisions that will have to be made and I don't like the idea of who could be making those decisions anymore than I like who already makes them.
Is there a balm? Yes, but it's not me. There is a Balm in Gilead.
Is there a fire? Yes, but it's not me. It speaks from a burning bush and it says, among other things, "I have certainly seen the oppression of my people...I have heard their cries of distress....Yes, I am aware of their suffering. So I have come down to rescue them...I will be with you...I AM WHO I AM." God has always proven Himself faithful to those who are oppressed and suffering. He always comes to the rescue and is with us. He is always I AM. Always present tense. Those words spoken to Moses thousands of years ago still hold true today.
It won't be easy, but it can happen. It will take time, but it has to begin now. We have to move toward our preferred future and it will be costly. We can break the crystal ball. Who will smash it?
God. God holds the world in His hands. There are those who think they do and they are jockeying for position. Humankind has a history of trying to wrest control from God. God has yet to fully let that happen. It hasn't happened yet. It will not and cannot happen. The tide will turn. We can work with God. Or not. God has a history of standing with the least, the last, and the lost. Those of us with melanoma and who will get melanoma fall in there somewhere.
He's got the whole world in His hands and that includes governments, insurance companies, medicine, and research. It's not the other way around.
And I am grateful.
Wednesday, April 11, 2012
Music In The World Of Melanoma
“One good thing about music, when it hits you, you feel no pain.”
— Bob Marley
Since Marley was a fellow warrior, who died from melanoma, it's fitting to quote him. He knew pain. Pain of life and pain of cancer. And he will always be right. There's just something about music that takes the pain away and transports us to a better place, even if temporarily.
Music has always played an important role in God's created order. In fact, many early church theologians held that God sang creation into being instead of speaking it into being. The Hebrew word we normally translate "said" can also be translated "sang" and given the prominence of music and singing in the Bible, I thoroughly love the idea of God belting out songs, maybe even some disco, as the universe took shape. Surely Rock-N-Roll was in God's repertoire and a little Beach Music as well.
God loves a party, knows how to throw a feast with style and flair, elicits praise, tells us to worship with music and dance, and is, in short, a party animal! I'm not sure why we often think of God as a long-faced sourpuss who, if He sang creation into being, sang a dirge. And a really long, slow one at that.
Music was so important in the grand scheme of things that when the first Temple was complete, the first men assigned to any function in the Temple were "men to lead the music at the house of the LORD...."! And let's not forget the Psalms, which means "songs."
And so it is that music plays a huge part in soothing the beast that rages within those of us who travel along Melanoma Road. We each have our own tastes, but I have yet to meet a fellow traveler that didn't reach for a tune every once-in-a-while when stressed out, worried, happy, needing to vent, or needing to get down in a Risky Business sort of way and show some serious attirude when no one else was around to watch. No matter what mood we're in there is music to match it, change it, or lull us to sleep so we can start over.
I find much in contemporary Christian music, myself, that lends itself to whatever mood I'm contending with or that is contending with me. I also love the traditional hymns of the Church. God blesses and uses other genres. We in the world of melanoma have our Patron Saints we can turn to.
We have Bob Marley. There's something about him reassuring us in Three Little Birds:
Dont worry about a thing,
cause every little thing gonna be all right.
Singin: dont worry about a thing,
cause every little thing gonna be all right!
cause every little thing gonna be all right.
Singin: dont worry about a thing,
cause every little thing gonna be all right!
That's something of a theme song for many of us when it's Hi-Ho, Hi-Ho, It's Off To Scans We Go time.
“One good thing about music, when it hits you, you feel no pain.”
We have Bruce Springsteen. Danny Federici was integral to E Street Band for almost 40 years and died from melanoma in 2008. According to information on the Danny Fund page, Hungry Heart is one song that showcased his talents. The Boss has also made a PSA on behalf of melanoma research. Whatever we deal with, Bruce has a song that fits and that can set our feet and hearts to dancing, taking our minds off our troubles for a while.
“One good thing about music, when it hits you, you feel no pain.”
And then, we have our own warrior who takes these masters of music and others, puts his own melanoma twist to the classics, and makes their music our music even more so. Hotel Melanoma gives us lyrics we can relate to set to the music we love. We don't get many perks at HM. At least we get a godly one. Who knew?
Who knew that even when we travel a dark treacherous road like cancer, that God has people in place, using their talents in ways that lift our journey, speak to our souls, soothe the pain within and without, and that can sing a new creation into our lives and world? Even if for a moment?
Music has that power. A forceful rocking tune has that power. A gentle soulful ballad has that power. Belting along with conviction over chaos has that power. Drowning out the voices of doom and gloom that pull us down with songs that lift us up has that power.
It's an awesome power. It's a transforming power. It's the power of music.
“One good thing about music, when it hits you, you feel no pain.”
And I, for one, am so grateful!
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