Thursday, December 29, 2011
The blessings have been huge, but none more so than in the melanoma community. To quote from the Melanoma Research Alliance: "2011 is a year in which landmark advances in melanoma research and treatment have been made. Two new drugs for the treatment of metastatic melanoma have been approved. These breakthroughs underscore remarkable progress that has been unfolding in the four years since the founding of the Melanoma Research Alliance (MRA)," Read the two page report.
There has been a mixed blessing within the growing community of those of us with melanoma at any stage. The blessing is not that the community is growing. Frankly, those of us already staying at Hotel Melanoma really don't want more people crowding the place up; and trust me, though the hotel proprietor does a good job, he doesn't want to keep enlarging his establishment either. Plus, you'd really rather be booking accommodations at a true luxury resort that you can leave when you want. Unfortunately, way too many people don't seem to be willing to take our word for it and just insist on checking the place out for themselves. Folks, "truth in advertizing" does exist and it exists at HM where the proprietor means it when he warns, "We can check out any time we like, but we can never leave."
But that brings me to the blessing that is found at HM and that is that as our numbers grow, there are names and faces and stories that are behind the numbers. We are real people with a very real vested interest in you knowing what we have to tell you. We're really very open and honest about how we came to find ourselves living, and way too often, dying, with melanoma. We want to kick the Beast (what melanoma is often referred to as) in the butt and to the curb. We see real hope and promise in that happening. While it's too late for us, it may not be too late for you or for our children. But you've got to pay attention! We're throwing out a lifeline that too many are ignoring. That's dangerous and deadly, people. Let us be a blessing to you instead of looking at us as an annoyance.
More and more stories are getting told! Blogs are being written, pictures shared, videos made, Facebook pages established for support and education. People are coming forward and sharing, in record numbers, to make a difference and make this journey count for something positive.
As we move into 2012 that's a blessing that will continue and grow. But I want to ask for more. One, if you already are sharing your story in some way, please, please make sure your name and face are attached! All blogs and Fb pages are set up where you can add "about" info. Putting a real name and face with your story makes it more powerful and real. It forces those who know you to sit up and take notice. Two, if you are not sharing your story at all, please do it! This really isn't the time to care about privacy or modesty. Even if you only cause one person to start taking their skin seriously and only one person is spared melanoma because you dared and cared, then wouldn't it be worth it to tell what this is all about and maybe even share a picture or two? In 2008, it never occurred to me to have pictures taken to document my surgeries and drainage tubes. I'm grateful and blessed by those who do it today though. Those who have made "no holes barred" videos are my heroes. We are talking "life and death" here people, so please, please share your story.
I see 2012 as another year for even greater progress in research and treatment options. Please read this one page Strategic Research Plan 2011-2015 from the MRA. This won't be cheap! Look in the mirror. YOU benefit from this work. Look at your family. THEY benefit from this work. Look at the people you cross paths with every day that have skin. THEY benefit from this work, though they probably don't know it. It's going to be largely up to those of us already in the melanoma community to do what we can to fund this.
So, in 2012, what can you do? We're all at different places and stages with different means, resources, abilities, situations, stories, the list goes on. The one thing we have in common, besides a common enemy, is a common (or should I say "Uncommon"?) God. God has given each of us a means to diminish the beast that seeks to diminish us. We won't each have the same way and means. But that's how it should be. It takes each of us bringing to the table what we can each bring and putting it all together.
Many of the strides being made are borne out of how melanoma has touched and/or devastated a life and family. AIM at Melanoma and the David Cornfield Melanoma Fund are but two organizations working on behalf of us for those who need to know what we know. (DCMF is the producer of "Dear 16 Year Old Me").
Not all of us will be working on such a large scale. I lift up Kspin Designs, as another example of how God uses our talents along with our melanoma to make a difference (read Kerry's "About Us" page). Read about how she networks to raise funds for research.
Do an online search for melanoma blogs and sites. Look at your home town. What do you see, who do you see, where do you see God calling YOU to step forward and educate, tell your story, make a difference? How can you turn 2012 around for someone before the year even begins?
As people of faith, we look back at the year passing and we look forward to the year that is coming. It's going to come and it will bring joy, it will bring sorrow. It will bring blessing and it will bring challenges. It will bring life and it will bring death. We each choose rather to ride its coattails or put that coat on and model it down life's runway.
Make 2012 a year of blessing as only you can. Not only for your family and friends, but for people you may not even know. You have a story to tell and your story will make an impact on someone whether you ever learn of it or not. Your coat has melanoma stitched in the seams. Put that coat on and model it down your life's runway. If you ride its coattails, that's your choice, but you'll ride it into obscurity.
As for me, I'm a Southern Mama Preacher and we hate to waste a good story.
And I am grateful.
(Link to last year's post around this time of year: Resolutions Schmesolutions)
Tuesday, December 27, 2011
Here are links to good, reputable resources and advice. This is by no means an exhaustive list, but it will get you started off on the right foot.
Cancer drugs are so expensive that many people fear not being able to pursue treatment. Many, if not most or all, drug manufacturing companies have programs available. Find out the company that manufactures your drug, go to their website and investigate what they offer. If you can't find what will help you, put your self-advocacy clothes on and pick up the phone. There will be a number you can call. Talk to someone and keep talking until you get help that you can afford and/or manage. Many drugs actually have their own info website which should also have assistance program info. Yervoy is an example.
Here's some help to get you started:
Yervoy is the new hot drug for melanoma:
http://www.yervoy.com/patient.aspx (there's a tab at the top for info on paying for it)
This link is your bonus for reading this page! It's a link to info about all the drugs used to fight any kind of cancer. You'll learn the common names, side effects, just about everything you could want to know...except the manufacturer, but there IS a wealth of info about the drugs that may prove useful:
Bottom line: cancer is an expensive disease to fight but there is help available. You may have to knock and kick on several doors, but persistence should yield a reward. It may not be what you hoped for and the amount you really need, but it may be a start and better than nothing. It may, on the other hand, be a tremendous blessing and provide substantial relief.
Prayers and blessings. If this helps in any way then
I am grateful.
Thursday, December 22, 2011
So, Saturday, I get the latest issue of Guideposts Magazine, but don't even get a quarter-way through. A MPC friend mentions "true beauty" in a post and it sticks with me. I know I'm going to write about that. In God's timing it seems. He had to get busy and lay a little groundwork. See, I thought I knew where this was going. Boy was I wrong! That's where "His Mysterious Ways" enter into the picture.
Last night, August 22, 2011, I actually went to bed thinking about this note. I had various ideas floating in my brain about the beginning and was weeding out the ones that didn't work. Then it happened. I went to sleep and dreamed. One of those life-like, realistic to a fault, dreams. One of those dreams that's still vividly on the mind upon waking and it feels like it really happened. I don't get many. But I pay attention to them when I do.
First, before I relate my dream, I'm stage 3b melanoma and have been since July 2008. I'm doing fine. Never had any treatments other than two surgeries to remove all the lymph nodes under my left arm (decided against Interferon), never had any sub-qs. I have traveled, extensively, through cyberspace and am well aware that my world can change at any time and my reality can become the stuff of my dreams...
Last night I dreamed both my arms were full, packed, back-to-back packed, with tumors. Some were truly hideous. Others were mounds under my skin that looked like what I grew up calling "pus bumps," but these were all sub-qs. And I slept. In the wee hours of this morning I had another dream. Not only were my arms covered, but so were both legs and my back. I was with my 30 year old daughter in a doctor's office. A woman resident was in there with us. She was looking at a chart, my daughter and I were talking and I was showing her all my tumors. The ones on my back and legs were all sub-qs. Nothing hideous like on my arms, but again, there wasn't a square half inch that wasn't filled with them. I was telling Jessica, my child, that I couldn't get rid of them, obviously, there were just far too many, and that with no insurance this was the way it would be. And I felt fear. I knew what this meant. Death was closing in and I felt scared and helpless...without insurance there was no way to fight these tumors that were literally everywhere on my arms, legs, and back. And this resident started talking to me. And I slept until Buddy Dog barked.
So, I get up and while my coffee perks, I go back to that Guideposts. My favorite part of that magazine is a regular feature, Mysterious Ways: More Than Coincidence, and I read it and realize I'm experiencing one of God's mysterious ways when it comes to this note. The knowledge that "true beauty" needs to be tackled, not having time to get to it right away, my dreams vs my reality, and now, a better understanding of what I'm to write. An understanding I didn't possess before those dreams. Last night.
True beauty is understanding life is a gift and fighting for that gift with every ounce and fiber of your being and if it means being filled with tumors, then so be it. You're filled with tumors. And, you're beautiful. If it means pursuing every IV treatment option and/or radiation and going bald, whether you're a man or woman, then so be it. You're bald, you've lost that so-called "crowning glory" of stuff we lovingly call "hair." And. you're beautiful. If it means losing chunks of flesh to get rid of tumors that seek to kill and destroy, then so be it. You're missing flesh and scarred. And, you're beautiful.
Whatever mark of grace you live with and carry with you that shows the world you're a fighter and you're fighting to hang on to the most precious gift God can give you this side of salvation and Heaven, life, makes you truly beautiful. The people of the world may see one thing; they may see "bald," they may see "scar," they may see "tumor," they may see whatever it is your reality is and think they're seeing ...what? Ugly? Something they couldn't do? Something they would "never" do? Something that should be hidden? Something that should keep you sequestered away inside? They are seeing true beauty in action and don't know it! They are missing a lesson that they will need one day and don't know it!
True beauty is an inner quality of grace and love that conquers the fears and doubts that accompany the tumors, scars, and baldness. True beauty is character that cannot be bought, doesn't come in a bottle, can't be applied to the skin to give an outward beauty that will fade. True beauty doesn't come from a tan, the sun, a catalog. True beauty isn't a commodity, not a degree displaying intelligence, not a packaged make-up, not designer clothes or name brand anything, not a body fed organic foods and fit through exercise. True beauty doesn't have six-pack abs and a drop-dead figure. True beauty doesn't have gorgeous hair, white teeth, and bright eyes.
True beauty often has puffy, blood-shot eyes from crying; hair that's stringy or gone; clothes that don't fit anymore; maturity that's ageless; and strength that's priceless. True beauty is what God's eyes see. Why can't our eyes cut through the outer garbage? Why can't we partake of the beauty of the fighting spirit and appreciate it and want it ourselves? Why do we pay for "beauty" and think we're "truly" beautiful or handsome? Why are our values so upside down and shallow?
Deep-down beauty is just that...deep-down. It's not superficial, shallow, and out in the open that the eye sees and labels "beautiful." Deep-down beauty doesn't fade. The day will come when all the make-up and plastic surgery in the world will make a person look more like a living joke than "beautiful." The day will come when that beautiful bronze tan will make a person look like living leather and possibly prove fatal.
Deep-down beauty holds the bald head high, shows the scars, fights the fight, and knows that life is worth living. Nothing worth having is cheap. Nothing worth holding onto will be kept without work and a fight. Nothing worth fighting for will be an easy fight without battle scars.
And those battle scars are the marks of true beauty. God's idea of beauty. At the end of the day, who's idea of beauty really matters, after all?
If you're reading this, maybe you've been touched by that which seeks to kill and destroy. Maybe you've got battle scars. Don't hide them or be ashamed of them. Deal with them in the knowledge that...
You are truly and magnificently
And I am grateful for you just the way you are!
Wednesday, December 21, 2011
There is very little actual "peace of mind" in melaworld. Some of us would add that there can also be little "piece of mind" as well. That one is self-explanatory, though. Oh what the heck...:).
I do not know how it is with other cancers. I can only speak of how it is with melanoma in particular. If this hits home with people of all cancer walks, so be it. I'm sorry that it is what it is.
Yesterday a comment was made on Melanoma Prayer Center, by a wife writing about her husband, that he's wondering "where is the peace of mind?" as he ponders the decisions he must make. Her comment about his question and the question itself have stayed with me. That's the thing about melanoma: there is no "peace of mind."
From the moment of our diagnosis, we are given statistics and other numbers, particularly a stage number. With that stage comes whatever options are available for fighting at that particular stage. Right now, there aren't too terribly many options available for any stage of melanoma. But, hallelujah, there are more now than there ever have been. There are also more new cases being diagnosed now than there ever have been. With new cases come new people and we are all different. Not all options are for everyone. (Not all cases are diagnosed at stage 0 or 1, or even 2. Many aren't caught until they are in the stage 3 and 4 zones. I'm stage 3b and have been since mine was diagnosed).
My options in 2008 were surgeries to remove the lymph nodes under my left arm (I had a cancerous mole on my upper left arm) and Interferon. I had all 27 of my lymph nodes removed in two back-to-back surgeries and opted not to do the Interferon after doing a lot of research about it.
That was my judgment call after learning all the side-effects of Interferon. I knew my body and system well enough to know that I couldn't handle it and that I could well end up being one of those people that chemo kills before the cancer does. I can't take aspirin or Tylenol without experiencing side-effects. There was no way I was doing Interferon following my surgeries. Technically, the surgeries removed the melanoma, but I'll never know because it had traveled to those nodes and even though the vast majority were cancer free, that doesn't mean that there isn't a renegade cell somewhere, that broke loose, and is waiting to pounce in my brain or lungs. If that happens, I'll need to reassess any chemo options, but I'll be here to do it and I'll have my health and strength for the fight. In the meantime, there's no "peace of mind."
People who opt for Interferon and other treatments don't get "peace of mind" either. What we all get are more statistics. We never know what works. We never know if or when there will be a recurrence. Garden peas, we don't even know if we'll make it through some of the tests or surgeries! Everything carries risks and we have to weigh those risks and the scales are never balanced and we never know which way they are tipping. And we never know which side of any statistic we really live on.
I'm a patient at Duke. I show up for that PET/CT scan before my surgeries and get told, you can feel free to recite these words with me, "I'm required to tell you that people have died during this test. You can still back out, it's not too late. But, if you choose to go through with it, you need to know that you might die. Not many people have, but because some have, I'm required to inform you that you might. Sign here if you understand this risk and choose to still have the PET/CT scan."
Here's what that scale looks like: let's see...have the scan and maybe live or maybe die, but I'll probably live. Don't have the scan and there'll be no surgery so I'll definitely keep the melanoma that's there and die a certain death. Hmmm...possible fairly quick death far too early OR a definite horrible, long drawn out death far too early.
So I signed the waiver, had the test, and guess what? This is the honest truth, when I had the test I was in full-blown menopause and 48, almost 49 years old. You name the symptom and I was there. I was "looking forward" to much more of that fun to come. After the scan, I never had another symptom. Menopause stopped altogether. A part of my system stopped doing what it was doing and was supposed to do. Nobody ever told me that might happen! Where is the peace of mind in anything? I would have still had the scan if had known this would happen. See the paragraph above about the scale.
There is no peace of mind surrounding any of our decisions when it comes to melanoma because we don't know how this disease is acting within us and what it will and will not respond to when it comes to treatment. We just don't. We have to know ourselves, trust our doctors, and pray. A lot of prayer for wisdom, guidance, miracles, healing, peace. We pray for that elusive and illusive peace of mind. We live with statistics.
We all have them. Mine is a 30-35% chance that my melanoma will return in the next seven years. When I was given this it was within ten years...a little over three have passed and so far so good. NED, no evidence of disease. To the untrained eye, that may sound pretty good. I have a 65-70% chance that it won't return in these next seven years. Nope, no peace of mind here. Let me explain why and in no particular order:
One: Let's say I breeze through the next seven years all clear. Well, those seven years will not have been a "breeze." They will have been filled with constant worry and dread that every new "something" is melanoma. They will have been filled with various doctor appointments keeping a check on this disease. And after the next seven years pass, assuming I stay clean, there will be no 100% guarantee that melanoma still won't return, I'll just get a new statistic. There's never peace of mind.
Two: Every statistic is made up of people. There are people who will, indeed, be in that 65-70% and will stay melanoma free for the rest of their life. But they'll have to live the rest of their life to realize it for they will always have the melanoma-specter pursuing them and they'll never know where or if it lurks. They will know no peace of mind. There are other people who will, and do, make up that 30-35% stat. It will recur and it will recur in a major organ...or maybe as another primary somewhere else on the body surface. I've seen this one lived out in a colleague. It happens. It could be me one day. Seven years down the road. Ten. Twenty. No peace of mind on this road.
Three: God doesn't promise to whisk this storm away or turn it into something it's not. He doesn't promise to bring some miraculous cure into my life because I am who I am. He promises, instead, to walk with me because of Who He Is. (Please take time and read the post "Miracles"). While this should bring a sense of "peace of mind," to be honest, it doesn't always. I'm human and sometimes the dread of this disease coming back is downright scary. I know the stories and I've seen the pictures and videos of what melanoma does and I don't...DO NOT...want that. I don't. Melanoma does what it does and it is what it is and "peace of mind" is not part of melanoma's package.
We know that, though. And we learn it early. So, we learn to take what we have to work with and we learn to take and weigh our options and go with what seems to be the best at that particular time and we hope for the best, prepare for the worse, and pray through it all. We move forward and we learn to try and not second guess ourselves because we can't go back and change a course once we set out on it. We understand that a lack of "peace of mind" accompanies us, but we also learn that God accompanies us as well. He also places terrific people along our path to help us along the journey. Many are devoted family and friends. There are those we meet in cyberspace. There are those we bond with in hospitals and doctor offices and clinics. They help us attain a modicum of "peace of mind."
While melanoma doesn't know the meaning of "peace of mind" and doesn't want it in our vocabularies either, I want to encourage you that God does know the phrase and God does want us to know that peace that only He can give. It probably won't resemble "peace of mind" too closely, not all the time anyway, at least not as society and culture define it. But we can know "peace" in our spirits as we move through this storm. Again, being human, there will be days when we don't know God's peace for various reasons, but God will still be there with us.
I began this post acknowledging that I find "peace" in doing this. In writing about melanoma, in encouraging people in their battle, in private email and Facebook messages counseling people who turn to me for hope, prayer, empathy for the battle and hope and help when they are dying and preparing to rest from their battle.
I find my sense of peace in knowing that God uses my journey to help others with theirs. I find peace in being used to diminish the beast that desires to diminish me. That's not a sense of peace as the world gives. It's a sense of peace that God gives.
And I am peaceful and I am grateful.
Monday, December 19, 2011
"It is what it is" despite its triteness, overuse, and all-around obviousness, has a way of actually proving useful when a person needs to face that "it" is what "it" is.
Sit right back and you'll hear a tale, a tale of a fateful trip. That started when I was diagnosed with RSD (reflex sympathetic dystrophy) following a car crash, in 1999, that resulted in a double fracture of my left thumb. I'd never even heard of RSD and had to go look it up. It affects every type of tissue in the traumatized area, can spread beyond that area and can even go full-body over time, and is what it is.
It affects bone by ushering in osteoporosis; it affects skin, pores, hair follicles and hair, blood vessels (heat and cold especially), muscle, nails, everything. The osteoporosis takes on a life all its own and is what osteoporosis is. My orthopedic surgeon, in 1999, informed me I would get rheumatoid arthritis within 10-15 years and it would take on a life all its own and and be what R. A. is. Whatever R. A. began around that left thumb would mirror itself in my right hand and spread from there. Strangely, he never uttered "it is what it is."
I didn't hear that phrase, and hear it redundantly, until melanoma entered my life via my a mole in my upper left arm. Yes, the same arm affected nine years earlier by RSD (which was in blessed remission!). Following two surgeries to remove all the lymph nodes under my left arm, I developed lymphedema and had really bad stiffness in my arm and ridiculous pain in my neck and upper back.
Side-note and newsflash rolled into one: When doctors operate on a person, they move that person around any way they need to in order to do what they need to do. They must have really moved me in some horribly awkward ways to get at those nodes! Good thing I was knocked out!
I digress. The trauma of those surgeries brought my RSD out of remission. Rats! I didn't realize it though until I began physical therapy for all my post-op problems along with the lymphedema. I had a fantastic PT who was trained for lymphedema who took care of everything. She had to juggle my RSD into her therapy plans for me because that changed my treatment picture. "No pain, no gain" is not the phrase for a RSD patient. She probably learned a lot from me. I should have charged her tuition. Many of my physical complaints were met with, "That's not the lymphedema. Lymphedema doesn't act like that. That's your RSD."
It is what it is. This is what lymphedema does: it is what it is. This is the best you'll get your arm movement: it is what it is. This is the best you'll get your back, shoulders, and neck. It is what it is. It was her mantra! I saw her twice a week for twelve weeks and I heard that phrase at least a dozen times or more during each hourly visit. Seriously. I loved her and wanted to throttle her at the same time. But, with that annoying phrase, she taught me I had to face what it is and learn what it is.
And it is melanoma. It is what it is. This was when I started to read and understand the Psalms in a whole new way and really face the fact that facts had to be faced and not avoided or run from. Heads must emerge from sand. The various psalmists write of "enemies" and for them their enemies were, by and large, human. Mine was melanoma. As I would read the Psalms through the eyes of a person living with this disease, I learned the tactics of all enemies. They're sneaky, they learn the person they come against and know their weakness...however, enemies also have Achilles Heels all their own. I needed to learn about my enemy, learn how melanoma behaves and understand that it doesn't behave! It is not polite at all! It doesn't care how young or old a person is, what race or gender. It only wants to create pain, cause death, bring total ruin to families. It will not settle for anything less.
Enemies hate their victim and, again to reiterate, want nothing less than death. Until death, though, they work to make lives as miserable as possible. They are vicious, deceitful, full of lies. They don't want to be caught. They are mean but also cowards. Enemies want to bring death, not taste it. Enemies delight in causing as much trouble, pain, and heartbreak as possible. Enemies want you to run in fear and not turn and fight. They want you to die and breathe fear and dread. They don't know what to do with weak-kneed bravery and courageous confrontation. They don't like it when you fight back but if you do fight back, expect enemies to call in allies and turn up the heat.
(Enemies thrive on lies and cannot stand honesty. Honesty, coupled with prayer, is a combination that turns the heat up under melanoma).
The Psalmists taught me, in ways I'll never fully understand, that I have a far stronger Ally that I can call on. I have a faithful God Who is my strength and shield. I learned to substitute "melanoma" and "cancer" for "enemies" and that little exercise grew my faith and hope. I also learned that God always wins against His enemies, therefore I'll eventually win against mine.
Right now I'm thumbing my nose at the beast, but I'm doing it aware that I have to keep a constant look over my shoulder because it's a sneaky, creepy, liar that pounces out of nowhere. One day I may leave this earth because of it, I don't know. I do know, however, that I'll win over it because it won't follow me into eternity.
This life is what it is. And it is good.
Melanoma is what it is. And it is limited and already defeated.
I am who I am. And I am a friend of God.
God is Who He is.
And I am forever grateful.
Friday, December 16, 2011
Our physical bodies change; our faith can be rocked and some people will turn away from God while others run to God, either way, our faith walk changes; our wardrobes change; our energy levels change; our temperaments and attitudes change; our priorities and values change; our self-worth changes. There are more changes. Any aspect of life you can think of, changes. We may not admit to any or all of these changes, but they are there nonetheless in the recesses of our minds and spirits. But we are blessed and we know it.
With all these changes come changes in how we relate to other people. Even if they don't catch on, we're different. We may, or may not, shout at them "Don't you get it?" But we think it. We want our family and friends to understand, but unless they've had "cancer" attached to them, they don't.
If you're reading this and you do not and never have had cancer, please do NOT say "I understand" because, trust me, you do not.
We are in holiday mode around the world right now. I'm in the USA and we've just had Thanksgiving and are hurtling toward Christmas. Much of the American culture started "celebrating" (or should I say "buying") Christmas a month or more ago.
I haven't put up the first decoration. Seriously. Ask my neighbors and I live on Main Street! I could care less about the decorations and shopping. I don't care about the parades and crowds and traffic. I sincerely don't give a fig about Christmas feasts and parties.
But my love affair with "Christmas" is the best it has ever been. That's what cancer does. I think it's probably all cancers that affect a person with it like that, but it may be a little more intense with those of us with melanoma. See, with melanoma, even those of us who were diagnosed at stage 1 a few months ago, know we could be dead from it by this time next year. I'm stage 3b. This time next year I could be in the literal fight for my life, I could be dead, or I may still be stage 3b.
When you know your factual existence can change, due to cancer, at any time, things ...well, they change. Holy days, like Christmas, take on a much more richer, deeper meaning. At least for me. And I'm not alone.
I find that with each passing Christmas, and this year marks my fourth since my diagnosis, I want to get more and more "to the heart of the matter." Decorations, shopping, and much fanfare and pomp and circumstance just don't cut it for me. I want hungry people fed, not those of us with much getting more.
I want a Christmas that I think Jesus would be pleased to share with me and I just don't see that in my surroundings. I want people who don't stand a chance of having a Merry Christmas to have one anyway because they matter to Jesus. Shouldn't they matter to me?
Yesterday's local paper had the story of a young teen in the next county over, who broke into a school looking for food because he was hungry. He cut up his hands and stopped what he was doing but he was caught and will be charged. That story and his plight HAUNT THE MESS OUT OF ME!!!!
Yet, every town has people, young people and elderly people going to bed every night and waking up every morning not "hungry," but HUNGRY!!!! That just shouldn't be!!!! That's not what Christmas is about. Don't we see that?
Many don't. Many will read that story and instead of compassion for him and outrage at ourselves we'll feel outrage for that youth and want the book thrown at him. I'm not condoning what he did, but I can't condone us either. I'm pretty sure Jesus would rather we feed him than book him.
That's what cancer has done to me. It has forced me to look beyond myself and my own little world and want to be part of changing the bigger world because that's what I have a gut feeling Jesus wants me to do. Wants US to do.
Don't say you understand if you don't. Melanoma has caused me to open my eyes to a more realistic set of priorities and realize this world isn't about me at all. Yet, I am beyond blessed and I know it.
My time here is short and this may be my last Christmas on earth and maybe not. We can all say the same thing though. Melanoma just brings that truth closer home and makes it real. I want to share my presence with family and friends, not merely presents. I want to share real presents with those in need and not just be a mere presence passing through this world.
I am blessed beyond words and I know it. I just want to share the blessing with those who really need it.
That's how I need to show that I am grateful.
Tuesday, December 13, 2011
Frankly, it's not the retail-world's job to tell us "Merry Christmas"!
It's my job to speak "Merry Christmas" to the retail world. It's my job, as part of the church universal, to show what Merry Christmas is and Who it's about to the world and not just retailers. It's my job to not support their hijacking of Merry Christmas.
The retail world is doing what they're supposed to do: make money and find ways to make more money, which means, find ways to make more and more of us part with more and more of our cash and credit. Merry Christmas everyone! It is NOT their appointed task to offer Christmas as the church does! It's not their job to "put Christ in Christmas"! And when they do say "Christmas" as opposed to "Holidays," it's not their job to define "Christmas" like the church does!
We need to get over that type of "he said, she said" mess and get about the business of being the church who shows what a Merry Christmas is all about.
Too bad too many of us have been hijacked and are buying into the retail world's definition. Too bad too many of us are already making plans to buy into the culture's way of spending Christmas day this year and will not be spending it honoring the One they want retailers to proclaim with "Merry Christmas"!
This year, 2011, Christmas Day falls on Sunday and you know what? Already there are churches that plan to shut their doors and not have services and Christians who already plan not to be at church because...drum roll please..it's CHRISTMAS!!!!
Go figure!!! And while you're figuring quit complaining about the business world not wishing you Merry Christmas. Congratulations, those not going to church because it's Christmas Day. You will have bowed, yet again, to culture.
Guess what? It will be Christmas Day all day long! Guess what? That family that you must spend "time" with and ooo and ahhhh over Santa Claus with will be quietly observing that the Santa of Christmas is more important to you than the Christ of Christmas.
Do you honestly think Jesus will understand that you need to be in the kitchen or under the tree instead of worshiping? Do you really think the presents under the tree are more important than the present of God in Christ?
Somehow, the wise men have been traditionally worked into our Nativity sets though the Bible doesn't work them into the story until Jesus is toddling in a house around two years of age. They didn't bring their presents to Jesus until he was two. The shepherds, brought their presence to the manger for the Baby Jesus and they brought all they had to bring. The sheep weren't theirs'. Owners of sheep had hired hands, shepherds, to tend the sheep and shepherds were dirty, lowly men who lived hard and worked harder. These weren't nice, clean-shaven, polite men that bowed that first night. But they bowed with all they had to bow with and that was merely themselves. And it was good enough.
Mary, a very young woman, so young that we today would call her a child since she was only around 12 or 13 probably, was of lowly birth herself. God used a woman to partner with Him to house Himself while they partnered to build the Temple that would one day be destroyed but be raised again three days later. A lowly woman was elevated to unheard of heights and today "woman" is still, in many places, not worthy to preach God's Word. Go figure! But that's "man's" world and not God's.
God doesn't stop with mere words. God backs those words up with action. Mighty, world changing and transforming action.
Isn't it about time that those of us who call ourselves "Christian" did the same?
Christ is in Christmas. Culture defines "Christmas" one way and can spell it and say it anyway they like. We don't have to support it or buy into it and when we do, WE are the ones who "take" Christ out of Christmas. The culture and businesses aren't going to "put" Him back either. That's OUR job and we do it by being more concerned about the Christ of Christmas and celebrating His way.
Christ for the world we sing. The world to Christ we bring.
That's the way it goes and is supposed to be. The other way around just messes things up.
Celebrate the True Christ of Christmas and not the retail knock-off.
I'll be looking for you
Thursday, December 8, 2011
Isaiah 26: 4
Trust in the LORD always, for the LORD GOD is the eternal Rock.
Now, God's a ROCK! I get that imagery. God's that eternal Rock that is eternally trustworthy. Not me. I fall short. But whoever said "I" was a rock? Keep in mind I'm going somewhere here and it's not "Pat Carol on the Back-Land."
Yesterday, as I write, it was suggested that men and women who deal with melanoma on a very personal level, because we have it, could possibly use a very private Facebook group (FB calls this type "secret" because the privacy controls are the tightest they offer).I was asked, as administrator of Melanoma Prayer Center, to host this group for members to have a safe place to discuss issues they can't discuss anywhere else. Many need to talk about "death" and that freaks their families out. Many are trying to work with chemo-brain and that brings special challenges that a person can't go around discussing at the office. There are a plethora of things we think about and deal with that, generally, don't leave our nearest and dearest anxious to talk with us.
Dealing with a deadly disease is a bummer. Dealing with a deadly disease in a death-denying culture is uber-bummer. To talk about death doesn't mean a person is considering throwing in the towel. No, but it does mean a person has to process this very real eventuality and families, by and large, don't like to talk about it. "Don't talk like that." "You'll be all right. You'll make it." "Everything will be OK." Parents, especially, learn those lines and learn them well and freak out at the possibility they may have to bury their baby. It's not the natural order of things.
I don't think "reality TV" has even tackled this one. I could be wrong though, but if they have, going by the industry's track record...it ain't real.
So, I set up this group and announced its creation so anyone interested could contact me to gain admittance. Now, I'll be the first to admit that I don't always word things as well and as clearly as I think I do. But I thought I did pretty good. For some, maybe. For others, no. I came across, for some, as I was closing Melanoma Prayer Center and moving to a secret group and it scared a few.
And that's when I realized the importance of MPC for some people. Mitch and I went shopping after my online announcement. I needed a new, reliable computer to continue doing what I do for my church and online. We returned home and I looked at FB hoping to see hundreds of people wanting to join the group and instead, I was greeted with a few panicky friends of MPC who count on that ministry. One, and I could hear the fear and dread in her comment, called MPC her "rock." Or am I her rock? For me, it's one and the same because I'm the voice behind that page. MPC's Scripture choices, prayers, music, other links, come from me.
Which come from, I prayerfully hope, me following God's leading. My Rock. I never thought about me or anything I offer the world as "rock" material or worthy of that description. It's humbling beyond words.
It also got me thinking, and as you know, that's dangerous. Watch out for falling debris!
By the time we get to a certain age, usually somewhere in adulthood and have people who depend on us for something...anything...we become a "rock" to someone. We all do things, everyday that impact someone, for good or bad. We will either be "rocks" or we'll be pebbles in their shoe. Just because we'd never ascribe that distinction to ourselves, doesn't mean others don't see us that way.
I never knew I was a "rock" until someone told me. That's probably true for most of us. The woman who sees me as a "rock" had no reason to call me that until she thought her "rock's" existence was threatened. That's probably true for most of us, too. We don't fully realize what someone means to us until their existence is threatened or gone. We don't realize what we and our work mean to others until they panic and tell us.
While her fears proved unfounded, I had to get busy and do some serious clarifying and put her mind at rest. Her "rock" isn't going anywhere anytime in the foreseeable future. Neither is MINE. Ever.
Who is your "rock"? Have you told them what they mean to you or how you value their work? They really won't be here forever. Living in a death-denying culture doesn't mean we can stay on this planet forever. We may deny death but we can't cheat it.
So why this blog post about "death" at Christmastime? Because we in melaworld face facts and we celebrate life as we talk about death. We know death is a valley we'll all cross but we choose to celebrate the journey to it and beyond it. What better time than at Christmas?
When you're trying to figure out that "perfect gift" for that "perfect person" who has "everything," ask yourself if they have the gift of knowing what they mean to you? That's unbreakable, irreplaceable, and non-returnable. You don't need plastic. You may need paper if you choose to write your thoughts or pen a song. OK, they can't drive that or wear it out to eat, so throw in a donation to their favorite charity (not yours). Let them know that you pay attention to what matters to them and since they matter to you...well...
Let them know how grateful you are that the ROCK put a rock like them in your life.
Saturday, December 3, 2011
Now that they've both grown and left the nest, I have gotten peace in the valley. Way too much peace. Be careful what you wish for as you just might get it one day.
On the other hand, wouldn't it be nice to get "way too much" of some of the things we wish for?
In that vein:
I wish for money for cancer research. All research. All cancers. And for melanoma, just once, to stand out in a crowded field. Oh, wouldn't it be glorious to have way too much money going to something we all benefit from one way or another? For those who do shop for me, consider making a gift to the cancer research of your choice. It's all connected.
I wish for people to have enough to eat and solid shelter over their head. Oh, wouldn't it be wonderful if way too much food was being put in the mouths of the hungry worldwide and there were no more starving children commercials on TV because there were no more starving children? Or elderly; they have hunger issues, too. And wouldn't it be spectacular if there were no more homeless people because there was way too much affordable housing and help for people who need shelter? For those who do shop for me, consider taking food to a family you know of, even if you don't know them personally, and feed them. Or, give to Habitat for Humanity. I have food and shelter; many are without.
I wish for people to have way too much common sense and not do stupid stuff like text while driving or talk on the cell phone while driving. Or let emotions give way to road rage. Or drink and get behind the wheel. Or do any number of things that put other people in danger and at risk because they "think I can handle it," or because "I do it all the time and nothing ever happens," or because "it's pretty much all about me and what I want to do right now". For those who do shop for me, consider putting the phone down, thinking about others you share the road and world with, and using your brain. I want you, and me, to live to see another gift-giving occasion.
I wish for people to have way too many books and educational advantages and opportunities. I wish literacy was way too valued by everyone and all parents. I wish way too many children had the best schools and brilliant teachers. I wish way too many schools had plenty of money to provide new books and technology to every student. I wish there were way too many resources available for each school district. I wish there were way too many children getting diplomas at all levels of education. I wish there were way too many children not left behind. For those who do shop for me, consider what God has put in your arsenal to help a child or a school have more of what they need to make the most of the abilities God has blessed them with. A book. A computer. Your tutoring skills. Your prayers.
And I do still wish for peace in the valley, but my idea of "valley" is now global instead of just "my own home." Oh wouldn't it be absolutely amazing and astounding if there was way too much peace in our world? If all families loved each other and took care of each other and there was no more abuse of any kind? If all citizens of all towns could keep their doors unlocked and trusted their fellow man because they knew they weren't going to be the next victim mentioned on the nightly news? If all countries could decide that life is a precious gift, even yours and even mine. For those who do shop for me, consider how you can work for peace and be that blessed peacemaker. Matthew 5: 9 says, "God blesses those who work for peace, for they will be called the children of God." If you are blessed then I'll be blessed.
I suppose that's a long enough list for Santa to tackle. Lucky for me I've been pretty good this year. All I want for Christmas is...
way too much...
For those who do shop for me...
Here's my list...
Make me grateful.
This is an earlier note on Melanoma Prayer Center. As we advocate for you to keep a check on your skin and moles and visit your dermatologist at least annually, there are things you need to look for in a dermatologist and even your primary care physician if that's who you take your skin issues to. As you read this, you'll learn what to look for in a dermatologist. It is also followed, at the end, by advice that a dermatologist posted on MPC in response to this.
On MPC this note is titled "Dear Dermatologists, We Need You!":
I know there are dermatologists and people in other medical fields who visit MPC and that tells me a great deal about you. It tells me that you are in the front of your field in understanding that you are usually our first line of defense against melanoma; you are knowledgeable of melanoma; and you take us, your patients with melanoma seriously. It tells me that you care about connecting with us on a deeper level outside office hours. I cannot thank you enough! But we need more from you, please.
As with any field: medical, religious, legal, technological, you name it, there are specialties. Even within "specialties" there are "sub-specialties." Dermatology is no different and because it's your field, you want to grow and get better. There are dermatologists who are very knowledgeable and stay up-to-date about melanoma, and there are dermatologists who aren't and don't. Their interests are in other dermatological arenas. (You know that because some of your patients have left them to come to you). And that's natural and fine to have those other interests, up to a point, and that's where we need your help desperately.
Many of us are patients of dermatologists who really know very little about melanoma. We need you to encourage your colleagues to learn something about it and about the human nature of people concerned about it. This is what we need from our dermatologists, and please, share this with them:
We need you to make sure everyone in your office is familiar with melanoma, even the person who answers your phone and schedules appointments. Make sure they understand that when someone calls saying they have a rapidly changing mole, freckle, or other place and need to see you...make sure your staff knows that can be deadly and to make an early appointment for that person even if it means working them in. Tell them NOT to put that person off for months until your next opening. I, personally, will thank you for that one!
We need you to see us as people and take our concerns seriously. When we come to you with a place on our body that we are concerned about and ask you to remove it and have it sent to pathology, PLEASE do not tell us "it's nothing." Do not tell us "we'll keep a check on it." Simply remove it and have it pathed.
Know enough about melanoma to know that there is no special look to it and know enough to know that watching it may kill me.
Ask me about my family history with melanoma and know my own history with it!
Know that unnecessary knots and anxieties are created in me when you do not take my concerns seriously and send me away with the suspicious place I came in with. If I trust my gut, why can't you?
We need you to understand that it's OUR mass, mole, freckle, change, concern; they will be OUR stitches and scars; it will be OUR recovery. Not yours.
And, if you call it wrong, it will be OUR melanoma journey and possibly OUR death. None of that will be yours. We don't ask for removal procedures for the fun of it or because we want another set of stitches and another scar.
We ask because we're afraid of what we see and feel and we don't want to die because of it.
We also know that we may have many, many suspicious places removed and come back "nothing," and we'll be relieved. And we'll be back the next time there's another one. Please never get to the point where you start telling us "They've all been nothing so far and this one looks like the rest and is nothing, too." You may remove twenty "nothings" but that twenty-first one may be the one that's "something."
If melanoma is beyond your area of expertize, PLEASE refer us to a dermatologist who knows about it. PLEASE! Don't put our lives in danger because you can't swallow your pride.
And, when that place does come back positive for melanoma, please refer us to a melanoma specialist oncologist. Know the one(s) in our area, even it requires a drive to get there. Let how far I'm willing to travel be MY decision, not yours.
Again, doctors reading this from MPC, you're already doing this, and more, and I thank you from the bottom of my heart. Will you please advocate for us when you're with your colleagues and at those conventions and CEU sessions?
Our lives are just as much in your hands as they are oncologists if we ever do get melanoma. We're trusting you and counting on you.
Please don't let us down. One day, you may be one of us and you'll understand. Put yourself in our shoes. They aren't comfortable.
Thank you and God bless you all!
As I promised above, advice from a dermatologist:
Vera Soong Hamrick wrote:
"I am old school. If you want to find a "good dermatologist", and this is just my own opinion, ask 1. Are you willing to do a true total body skin exam ( ENTIRE cutaneous surface including all creases and scalp; I also examine mouth, nose (found a curable septal melanoma once) and external genitalia and perianal area). If not that day then schedule for one. 2. Do you actively see inpatient consultations and are the medical staff of the local hospital? 3. Do you do volunteer work with indigent patients? 4. Do you have a good working relationship with other physicians who also csre for melanoma patients? (as noted on the post) That is what you are looking for and me too."
Dr. Hamrick actually commented three times and all of her valuable comments are gathered together in one note. To read that note go here: http://www.facebook.com/note.php?note_id=222851341117590
There are wonderful, knowledgeable-about-melanoma doctors who are our first line of defense.
And I am grateful.
Thursday, December 1, 2011
He makes me trust there are green pastures, even when I'm not so sure: he leads me to Living Water and invites me to be refreshed for the journey.
He protects my soul as he leads me where I need to go and helps me because He is God and has promised.
Yes, though I walk through the valley of the shadow of death and tarry a while in hospitals, I will not be afraid: for you are with me; your arms and the family, friends, and medical staff you have given me, they comfort me.
You prepare a table and set a feast before me in the presence of cancer, my enemy: you bless my head with your finest oil; my cup runs over with gratitude and blessing. My enemy can only watch from a distance.
Definitely, your goodness and mercy will follow me all the days of my life: and I will dwell in the house of the LORD for ever where my enemy cannot follow and is not allowed.
As I follow the LORD, my Healer, His goodness and mercy follows me. Cancer can only be part of my life but for so long. It will not always be part of it. Sooner or later it will have to leave me alone as it cannot and will not follow me into the house of the LORD where I will live forever. "Healing" does and will come. Not, necessarily, as this world understands "healing," though. But it does come.
And I am grateful.
Tuesday, November 29, 2011
Love is patient and kind; melanoma is intrusive and vicious. I need to remember to let love rule.
Love is not jealous or boastful or proud or rude; melanoma can lead me into a sense of thinking only about me. It can also make me depressed and cranky. I need to remember to let love rule.
Love does not demand its own way. Melanoma can make me very demanding. I need to remember to let love rule.
Love is not irritable, and it keeps no record of being wronged. It's not my fault I have melanoma and it's not my family's fault either. I need not feel guilty or make them feel guilty when they do their best to look after me and I snap at their efforts. I need to remember to be appreciative and let love rule.
Love does not rejoice about injustice but rejoices whenever the truth wins out. Melanoma is just plain wrong but it cannot win. It can only do so much. It is limited to what it can do to my body and though that is horrible beyond words, it cannot touch my soul. It cannot follow me to heaven. It cannot kill my faith. I will always win against melanoma because God has already won the ultimate victory.
Love never gives up, never loses faith, is always hopeful, and endures through every circumstance. Therefore, neither will I give up, lose faith or lose hope, and I will endure everything melanoma throws my way because God is Love. I have God in my life and I know Love. Melanoma serves to make me a stronger person. It may weaken my body, but it will not weaken my perseverance or my resolve. No! It will make me all the more determined.
What is known today about cancer, and melanoma in particular, will give way to new discoveries. But love will last forever and it will not give way to anything! Now our medical knowledge is partial and incomplete, and even diagnoses and prognoses reveal only part of the whole picture! But when full understanding comes, these partial things will become useless.
When I was a child, I spoke and thought and reasoned as a child. I didn't believe melanoma could happen to me. I did what I wanted to do and didn't listen.
But when I grew up, I put away childish attitudes. Melanoma has caught up with me and everything has changed.
Now we see things imperfectly as in a cloudy mirror, but one day we will see everything with perfect clarity. All that I know now is partial and incomplete, but then I will know everything completely, just as God now knows me completely.
Three things will last forever—faith, hope, and love—and the greatest of these is love.
Melanoma isn't on the "forever" list!
Hallelujah! I am forever grateful!
(NED: no evidence of disease)
Friday, November 25, 2011
This year, just yesterday, somehow, out of nowhere, in a mad rush to get more of the Black Friday dollars, a few stores began Black Friday on Thanksgiving Thursday.
And many shoppers happily complied. To garner big savings. I guess that was one more thing to add to the "What I'm Thankful For" list this year. My big fear is that Thanksgiving will get squeezed out of the picture as "Thankful Thursday" takes over the consumer landscape. And we'll complain when no one says "Happy Thanksgiving" anymore. Retailers will greet us with "Happy Thankful Thursday" and lure us into earlier shopping instead of spending time with out families. Eventually someone will complain that "no one said Happy Thanksgiving" to me. But still they'll shop and spend. Doing it for the ones they love, saving big bucks. Why spend time when you can spend money? Why waste time with loved ones you may never see again when you can waste money on stuff that won't matter once it's opened?
Thanksgiving will come to resemble Christmas. The "real" meaning of Christmas gets more and more lost in the shuffle as people rush to do more and more and spend more and more and none of it even begins to "look like Christmas." And then some people complain because no one says "Merry Christmas" anymore. "They've" taken Christ out of Christmas!
"Put Christ Back In Christmas" becomes the rallying cry for Christians. Don't let "them" keep taking Christ out of Christmas!
Well folks, the "they" is "us". We took Christ out of Christmas and we can put Christ back. How? We can find Christ in Christmas.
Putting Christ in Christmas is more than saying "Merry Christmas." If you tell someone "Merry Christmas" and then do nothing to ensure they have a Merry Christmas, what have you accomplished? Even non-Christians can say the words and they have no real meaning to them, it's just another paid holiday.
If you insist people greet you, whether they believe in Christ or not, with mere words and then do nothing to show them the Christ of Christmas or live the Christ of Christmas, what have you accomplished?
If you really want to put Christ in Christmas, then find the Christ of Christmas. Where is Christ? He's at the homes of the poor and hungry and lonely. Those who'll have nothing under the tree. You want Christ in Christmas? Then stop getting all up in arms about words and get your arms busy showing the love of the Word.
Get hung up on what matters and stop getting wound up about what doesn't.
Christ is going to go without a lot this Christmas and we can do something about that. But it will take more than saying "Merry Christmas" to do it. And, by the way, nobody is stopping you from saying it to anyone you want to. Nobody is stopping you from finding the Christ of Christmas either.
But to do that, we'll probably need to spend some of those dollars on the poor and spend some of that time helping those in need instead of lining cash registers. We won't find Christ in the rush of dizzy conspicuous consumers waiting to spend big to save big.
He'll be at home with those who can't even dream of doing that.
If Christ is out of Christmas, it's our fault. We can put Christ back in Christmas. First we may just have to find Christ in Christmas.
We can do it. He'll show us the way but that means we have to follow instead of run ahead. It means we need to read Matthew 25: 31-46 below and take it to heart.
In our family, we give Jesus a present every year. It's His birthday. Not ours.
And I am grateful!
(Matthew 25: 31-46 from The Message:
31-33"When he finally arrives, blazing in beauty and all his angels with him, the Son of Man will take his place on his glorious throne. Then all the nations will be arranged before him and he will sort the people out, much as a shepherd sorts out sheep and goats, putting sheep to his right and goats to his left.
34-36"Then the King will say to those on his right, 'Enter, you who are blessed by my Father! Take what's coming to you in this kingdom. It's been ready for you since the world's foundation. And here's why:
I was hungry and you fed me,
I was thirsty and you gave me a drink,
I was homeless and you gave me a room,
I was shivering and you gave me clothes,
I was sick and you stopped to visit,
I was in prison and you came to me.'
37-40"Then those 'sheep' are going to say, 'Master, what are you talking about? When did we ever see you hungry and feed you, thirsty and give you a drink? And when did we ever see you sick or in prison and come to you?' Then the King will say, 'I'm telling the solemn truth: Whenever you did one of these things to someone overlooked or ignored, that was me—you did it to me.'
41-43"Then he will turn to the 'goats,' the ones on his left, and say, 'Get out, worthless goats! You're good for nothing but the fires of hell. And why? Because—
I was hungry and you gave me no meal,
I was thirsty and you gave me no drink,
I was homeless and you gave me no bed,
I was shivering and you gave me no clothes,
Sick and in prison, and you never visited.'
44"Then those 'goats' are going to say, 'Master, what are you talking about? When did we ever see you hungry or thirsty or homeless or shivering or sick or in prison and didn't help?'
45"He will answer them, 'I'm telling the solemn truth: Whenever you failed to do one of these things to someone who was being overlooked or ignored, that was me—you failed to do it to me.'
46"Then those 'goats' will be herded to their eternal doom, but the 'sheep' to their eternal reward."
Wednesday, November 23, 2011
While there is much to be said for "standing out in a crowd" and "being yourself," sometimes it can be better to "follow the crowd," particularly if the crowd understands you and is your support system. Solomon eloquently reminds us that often it really isn't good to be alone and that we need each other. Those words are never truer than when cancer enters your world. Melanoma is a particularly vicious cancer, though none are "nice" by any stretch of the imagination. I'm not crazy about the term "molemates" but that's what we are. Kindred souls bound by moles. Thick and thin bound by skin. For better or worse, blessing and curse.
This being Thanksgiving Week, I'm joining fellow bloggers in saying "thank you for being here."
Thanks to the Internet there's a vast, worldwide melanoma community that connects every day. I'm part of several support groups, I also have several fellow-travelers I message and email privately, I have many who come together on Melanoma Prayer Center. We all have special connections. If for some reason, you're reading this and you aren't connected, we're here waiting for you. Please don't try and do this alone.
There are many who blog and have other melanoma awareness websites. They share their stories and information. There are actually millions of us melanoma warriors worldwide so while it would be impossible for us all to connect with each other, we do make those special connections. There are people I have to thank. Some have gone on and I will hunt each one down and give them big hugs when I finally meet them one glorious day.
Some are very much here and there are far too many to mention by name because like all those who receive Oscars, once you start naming names, someone will be inadvertently left out.
There is one, though, that I do have to let stand out because he's a special answer to a prayer I never thought would be answered. I have a younger brother and it's just the two of us. Growing up we bickered a lot and quite frankly, I often wondered why I couldn't have had a big brother instead of a baby brother. I always secretly thought my life would have been smoother that way. I was cut out to be the little sister, not the big sister. God, obviously, thought differently and since He's always right, my relationship with my baby brother has gotten good over time.
But God, in His infinite provision and with a sense of humor, has given me something of that big brother I've always wanted. He waited 52 years, gave me a Catholic big brother (I'm Protestant), a big brother who isn't southern, and one I've only met in cyberspace. He's a fellow molemate and I'll meet him next year, God willing. See, I'm already brushing up on my Catholicism. He's very much a kindred soul and being that perfect big brother, when I pick on him, which I do often, he takes it nicely...which he kinda has to since he can't reach out and slap me and also because he picks back.
Like my idealized big brother, he makes me laugh and is there when I need a brotherly "tut-tut." He began his melaroad travels way before me, has seen much, and generously shares from his limited fount of knowledge. I had to pick a little!
So, thanks to all who have a room with me in Hotel Melanoma. While we do need to talk to management about better accommodations, we're in good company and
I'm grateful you share your journey with the likes of me.
Tuesday, November 22, 2011
Halloween. Oh, I can't stand the scarier aspects; and, as "holidays" go, for me, this one really isn't one, but what I like about Halloween is the Halloween candy. This is the one time of year that I can indulge in ridiculous amounts of all my favorites and no one says a word. Not a word! And, hooray! Halloween, in Conway, NC, got rained out this year! I'm STILL enjoying York Peppermint Patties and Reese Cups. We just finished off the little 3 Musketeers, Milky Ways and Snickers. From the look of things, we do need to develop a like for Whoppers, Nestles Crunch, Kit Kats, and Heath. Thankfully, miracles do happen, so we'll see.
Court Shows. Can we say Judge Judy? Judge Alex? Judge Marilyn Milian? For good measure throw in Judge Matthis. I sure do miss Judge Jeanine Pirro. Not all day every day, to be sure, but I find these shows and the people on them fascinating. As a pastor, these shows are an invaluable insight into real lives of real people that I don't get elsewhere. Plus, all that free legal advice has come in mighty handy. TV Court Shows are a huge guilty pleasure that I am extremely grateful for. Halloween candy comes and goes; court shows go into reruns.
So do all the shows on Food Network. Tuesday nights are reserved for "Chopped." Wednesday nights for Restaurant Impossible and Sunday nights for The Next Iron Chef: Superstars (for now) and Iron Chef: America. Sigh. Who could ask for more? OK, I could.
HGTV does like to introduce fans to House Hunters every night, several times a night. National and international house hunters searching for that perfect home. Will they find it? What astoundingly high and unconscionable amount will they be willing to pay for a little bit of square footage in a prime location? My head gets a lot of exercise from all the shaking it does as I watch what people pay big bucks for and get next to nothing.
And paying big bucks and getting next to nothing brings me to the last guilty pleasure I'll confess to: politics. Anytime I want a laugh, I just tune in to who's promising what pie in the sky. Might as well laugh as cry.
Thank goodness for humor in this life! God is good and even when much in this world isn't...
I am still grateful to be here.
Tuesday, November 15, 2011
And For the Ignorant, the Arrogant, the Fearful, and the "It Can't Happen To Me Crowd"
What follows is the post as originally written. Yesterday as I write this in red, I wrote another post calling for us to stop using the "s word" when talking about melanoma. The information below is still accurate but please also read the post I've linked to here for a fuller understanding. Do a search for melanoma at this blog and you'll find even more info. If you are part of the melanoma world in any way, please feel free to connect with me at Melanoma Prayer Center on Facebook. Thank You and now, on to that post!
Yesterday, as I write this, I posted a one question poll on my Facebook page asking if people who don't have melanoma understand "melanoma" to be another word for "skin cancer" or if they know it to be a specific kind of skin cancer that's deadly. A few of my melanoma-smitten friends posted that on their FB wall also.
There's a lot of dangerous misconceptions out there about melanoma and, from what I've seen, about skin cancer in general. So, on behalf of all my fellow travelers in the greater Skin Cancer World, please sit back, put your reading glasses on if you need them, and become enlightened so maybe you don't join our ranks.
Please understand that no matter which skin cancer we're talking about...that word "cancer" is attached. CANCER. That's not a word people get happy having attached to them. We do not say, "Oh, they just have stomach cancer." Or, "I just have liver cancer." "It's just lung cancer." Why do we feel like we can say "just skin cancer"?
There are three major types of skin cancer: basal cell, squamous cell, and melanoma. A combined total of more than 3.5 million of these will be diagnosed in the USA alone this year making skin cancer much more prevalent than breast, colon, lung, and prostate COMBINED! Basal cell is more common and rarely fatal. Squamous cell is the next common and more than 2500 people WILL die from squamous cell this year. Melanoma is the most deadly of the three and over 8700 people die from it each year. It's on the rise worldwide and on target for being the deadliest of ALL cancers by 2022; eleven years from now. Pretty rough numbers for something that is "just" cancer.
While not all of these cancers are deadly, they are all scarring and disfiguring. None of them card or care. None of them care who you are, what you do for a living or how much money you make. They don't care if you're insured or not. They don't care where you went to school...or if you are still in school. They don't care how old or young you are or what color your skin is. They don't care what gender you are or what your sexuality is. They don't care if you exercise and eat a wholesome diet. They are looking for SKIN. Not the prettiest or the most flawless or the tannest; they just need skin to get started.
Or so we think, because they are called "skin" cancer. Melanoma can get started in your eye. Melanoma isn't necessarily an "out there where you can see it easily" cancer, either. It can start in your ear canal. Got a rectum? It can begin there. Women of any age, it can begin in your vagina. Folks, if you have nails on your hands and feet, it can grow under your nail beds. Not to be left out, there is even oral melanoma that begins in your mouth! It doesn't need the sun or tanning beds to provoke it as it likes the soles of feet and the palms of hands.
There are plenty of statistics out there regarding melanoma and ethnicities, genders, and ages. And while in some instances, some of those stats can appear pretty good, they can also lull certain groups of people into a false sense of security because they think it can't happen to them and it's a disease other people have to worry about. While it's true fewer African-Americans and Hispanics get melanoma than Caucasians; today African-Americans and Hispanics will be diagnosed and some will die from melanoma. While it's true more men get it more often than women; today, women will be diagnosed and some will die from it. While it's true people in their upper twenties and older get it more often; today, children and teenagers will be diagnosed and some will die from melanoma.
Statistics are numbers only on the surface. Scratch that surface and you'll find every stat is made up of real people. People like you and me. People who thought it couldn't and wouldn't happen to them. They didn't fit the profile. They didn't tan either in the sun or in tanning beds. People who thought it was really no big deal because it's just skin cancer.
One final word. Melanoma is particularly noted for having what we lovingly call "renegade cells." All it really takes is only one. You can get that mole, bump, or freckle removed, have it sent to a pathology lab, and it come back "stage 1" melanoma. You aren't cured. There isn't a cure. The best you can hope for is that it doesn't come back; that you don't have a renegade cell loose in your system waiting to surprise you and wreck havoc on you.
It can come back as other primary tumors in your skin or another mole. It can find a home in an organ and come back like gangbusters! You can be diagnosed at any stage at any time. I was initially diagnosed stage 3b as it had already spread to my lymph nodes under my left arm. When it comes back, if it comes back, it will either be in my brain or my lungs. And that will be melanoma that has spread...not brain cancer or lung cancer. People with melanoma that begins in their legs or groin have to worry about it returning in their liver.
Those returns are called "mets." They're nasty, aggressive tumors. Sometimes they can be controlled; sometimes they can be shrunk and killed; sometimes they do the killing. Research is improving and so are available treatments but like everything else in life, not every treatment works for everybody.
The best course of action is prevention to the best of your ability and education. Be aware and be vigilant. When you see something on your body, get it checked out pronto. Don't get sucked into waiting because you're scared or broke. Go to a dermatologist that knows about melanoma.
And a strong word here: you are your own best advocate. Not all dermatologists or general practitioners are up-to-date and knowledgeable about melanoma. If your concerns are not taken seriously, if you are told "it's nothing" but you feel differently...run, don't walk, to another doctor. If you want something removed and pathed, find someone who will take your concerns seriously and remove it and path it.
Another thing that probably has a stat somewhere: today people will die needlessly because their concerns weren't taken seriously; something that looked "OK" wasn't; and by the time that was realized, it was too late. Don't let that happen to you.
Be aware of your body. Be attune to your gut instincts and act on them. Take care of yourself and love the skin you're in.
For more info on all skin cancers, read this: (the info is updated as of Aug. 28, 2020
It's your life.
Wednesday, November 9, 2011
There are no Cowardly Lions, for all possess unbelievable courage.
There are no Scarecrows, for all possess more brainpower than you can imagine.
There are no Tinmen, for all possess heart in a God-sized capacity.
We may not have started off like that, but that is how we are transformed for this is truly a transformational journey. A journey none of us want, but the journey we are on nonetheless. It's a journey that requires getting our heads out of the sand and facing reality. It's a journey that compels us to want to travel this as a "road less taken" because we really do not want you traveling with us.
I've written about this before but there are aspects I haven't shared. Aspects, though, that I live with and you need to understand because I don't want you living them, one day, too. MelaBlack Road isn't "black" for nothing. It's paved with brokenness and death. In that pavement is grief, pain, financial ruin, and treatments that can kill the person before the cancer can. Above the tar is a rainbow. Absolutely there's a rainbow. It's colors are Resilience, Optimism, Yearning, Gratitude, Belief, Inspiration, and Vision. God is our pot of gold at both ends of it. The Beginning and the End.
When a person finds themselves on MelaBlack Road, it is a scary place. That Wicked Witch is called "the beast" and the beast has lots of cohorts it sends out to try and capture our thoughts, hearts, minds, souls, and bodies. Sometimes, they're successful. For a while. It may take a while, but we eventually get ourselves pulled together and our heads straight and get back on track.
See, one of the things we learn right off and that you really need to understand, is melanoma is NOT Just skin cancer. And it really shouldn't be referred to as "melanoma skin cancer" because that misleads people into thinking it is another skin cancer. It's not. Let me repeat that: It Is Not!
It's definitely scarring and disfiguring. It's also highly deadly. Once "melanoma" is attached to you, you are given two numbers: a stage and a statistic appropriate for your stage. And you also learn that, in a sense, you can throw all that out the window because once melanoma is a label you carry, your stage can change at any time. You can go from being stage 1 to stage 4 in a short matter of time.
I'll use myself as an example. Because I waited, prayed, hoped for a miracle, and was slow and fearful to act when my mole started changing, when I did get it removed and pathed, I was stage 3b right off the bat.
My lovely statistic: a 30-35 % chance of it coming back in ten years. When, or if, it does come back in those ten years, it WILL be in either my brain or my lungs. See, my mole was removed from my upper left arm and the cancer had already spread to my lymph nodes. ANY TIME someone has lymph nodes removed...it's not good. Other locations of melanoma, like on the leg, will mean the warrior is concerned with it spreading to their liver.
Oh, I may get other primaries in my skin or other moles, but I also live with the knowledge that I may have one, just one is all it takes, one renegade cell loose and traveling, waiting to land in and start growing in my brain. I'm three years into that stat and am still NED (no evidence of disease) and that can change tomorrow. "Just" skin cancer? NO!!!!
Now I know some of you are saying, "30-35% chance is pretty good. That means there's a 65-70% chance it won't." Yep. I know. That's what I'd like to bank on, too. The problem with that is that those numbers, on both sides of that stat are real, actual, breathing people. I've seen people on both sides of that stat. So far I'm on one side. Tomorrow I could find myself on the other. All stats, of anything, are made up of people living out that stat. They aren't just numbers.
If you're reading this, I'm pretty sure you have skin. It doesn't matter what color that skin is or how old or young it is. It does not matter. It doesn't matter if you have lots of moles or freckles or not. There are stats for all that, too, that can lull people into a false sense of security. If you have skin, get it checked once a year by a dermatologist that specializes in melanoma.
I don't want to meet you coming or going on MelaBlack Road. I have enough traveling companions and I love them dearly, but I have enough.
The trouble is, some of you will join me. Either the damage is already done and is just waiting to jump on you, or, you aren't listening. Smugness, while it may work in some social circles, is stupid, costly, and deadly. So is "denial." So is "fear and panic." So is "I can't afford to get checked."
You can't afford not to. Smugness doesn't cut it on this trip to Oz and it's not a destination to flaunt in your friends' faces. Get your head out of the sand and in a dermatologist's office before you find it in an oncologist's.
To all my friends on this journey, I love you and am grateful for your company. You inspire me and keep me going.
To all you others, do me a favor and make my journey worth it.
Make me grateful for it.
Friday, November 4, 2011
Wednesday, November 2, 2011
1) All we really need are our daily essentials: food, water, a bathroom of some sort, and someone to scratch our back. God does provide! Just look outside!
2) Get real people! If a dog can love unconditionally, why can't you folks get a long better?
3) Get over it! If someone won't play nice, bring them a slipper or share your bone. Bring out the big guns, your squeak toy, if they're really nasty. Who can resist that?
4) The spice of life is grease! Add a little to each meal and even the worse food becomes palatable.
5) Vets may mean well, but, let's get real here. You people really don't fool us. Give it to us straight! Remember, you don't like going to the doctor, why should we? And, for the record, needles aren't fun for us either!
6) Neither are those big pills that could choke a horse. Do you hear me neighing? Time for a reality check.
7) Be forgiving of others as your dog is forgiving of you.
8) Do you hear me complaining about every little thing? It doesn't take much for me to wag my tail. Why can't you be more like a dog?
9) Turn off the TV and computer. Put down the cell phone. Life's too short for all that. How about grab my leash and let's take a walk instead?
10) And when you don't turn off the TV, get off the computer, or put down the phone, just let me lay by your feet and I'll be truly happy and blissful.
11) Relish the simple stuff. I do. That's a dog's life!
12) Be grateful for the "good boy" and pat on the head. That's ample reward for being a good dog. I'm grateful. Why can't you be?
Buddy, you're a smart dog to be sure and you probably are a higher life form than me. You make a lot of sense.
And I am grateful!
Monday, October 31, 2011
It's a mutant gene in the Taylor family. Her great-great uncle Leroy graduated from UNC Pharmacy School, as did her Granddaddy Jim, her Daddy Mitch, and her Uncle Stacey. My Daddy George graduated from UNC Dental School. UNC was in her family tree, pharmacy was in her DNA, and the two combined were her destiny. Life sailed along relatively smooth for her. She had anoles and an iguana as a child so she could study the "effect of vitamins" on them. She worked at the family drug store. She was very responsible and level-headed, with her head in Carolina Blue clouds. She never paid attention when Campbell University opened the second Pharmacy School in NC in 1986. She was only 5, so who cared? They were not UNC. The dream lived on.
She went to local Chowan, then College, now University, and took her pre-pharmacy courses with every intention of getting all that done in two years so she could move onto UNC for four years of Pharmacy. She took the PCAT both years, even as a freshman and did well!
She stayed on track and applied to UNC Pharmacy, as planned, and practically had her bags packed. Pharmacy School has a limited number of openings so I urged her to also apply to Campbell. My advice went unheeded. She received notice that she would not be filling one of UNC's seats and that she was number 9 on the waiting list. Wait she did! When it became obvious that 2002 wasn't going to be her year, she made plans and went back to Chowan for a third year. Because she had been number 9 on the waiting list, she just knew in her heart of hearts that she'd be one of the first accepted when she applied the next year. She was determined 2003 was going to be her year to begin Pharmacy School.
So, when it was time, she applied to UNC. Not to Campbell as well. The only time she ever gave Campbell a thought was to tell me "no" when I urged her to apply. They both had a limited number of open seats, if one didn't accept her, maybe the other would: that was my reasoning. Her reasoning for not listening to me was "They aren't UNC."
She applied for early acceptance. I remember checking the mail that Wednesday morning in March 2003. She was at home when I returned from the post office. I handed her the letter from UNC. Her excitement turned to sheer disbelief, anger, and tears when she read she had been waiting listed again...this time in the double digits...in the 40s!
It was 10:30 am and she grabbed that letter and rushed out the door. She was going to Chowan to see her advisor. Bonnie had connections! Bonnie would know what to do about this outrage! Bonnie had no clue Jessica was on her way!
I breathed a quiet, "Help her Lord." and I very distinctly heard God say, "Watch me work." That was it. Watch me work.
When Jessica returned home she said Bonnie would see what she could do. She had meetings that afternoon but when she got a chance, she'd make some calls and get back in touch with Jessica later that evening. She had a meeting that wasn't on her agenda. It was on God's though.
Bonnie called back at 6 pm that evening. Remember, this was Wednesday and ALL applications for ALL pharmacy schools had been due early February. ALL deadlines were well past.
Around one o'clock that afternoon, she was in her office meeting with two advisees, her office door was open when she heard a woman's voice across the hall. She was there to see Dr. So-and So and she was from the Campbell School of Pharmacy Admissions Office. She needed directions to the Dr.'s office.
Bonnie stuck her head out of her door and asked the woman if she had heard her correctly. She had! Bonnie asked her if she had time to meet with her about a student. She did! Bonnie's advisees willingly postponed their meeting and Bonnie and this woman from Campbell School of Pharmacy Admissions Office spent an hour going over Jessica's file!
It turned out this woman was on the Admissions Committee for the Pharmacy School and they had one more meeting that coming Friday and five seats left to fill. If Jessica could get all her admissions materials together and in her office by Friday morning when they met, they'd consider her. They would accept faxes of all transcripts with the understanding that originals were in the mail.
It wasn't her dream. Up until then her dream was UNC and pharmacist. They went together. The question became: is it more important to go to UNC or more important to be a pharmacist. I guess you know how she answered.
She hauled boogie the rest of Wednesday evening and all day Thursday getting her material together and faxed. When that committee met Friday morning all her info was there.
Monday she was called and told she was one of the five admitted!
She never looked back. She embraced Campbell with a bear hug! She entered the Class 0f 2007 in August of 2003.
To live her ultimate dream, she had to let go of another. And you know what? It turned out to be the best move for her! UNC, while a great school, would have swallowed her whole. Campbell was a perfect fit. God knew it all along and when she wouldn't listen, God made a way. All we had to do was watch Him work.
It can be painful to relinquish a dream. It can seem stupid and like the worse move possible. But God does know what's best for us.
Oh, when she graduated, she already had a great job lined up. Other dreams of hers have fallen into place and I think she learned a thing or two about God in the process. Me, too.
And I am grateful.