Thursday, December 29, 2011

2012: The Year In Preview

Not being one to make "resolutions," I'd rather count the blessings of the year that's giving way to the New Year and look ahead to the blessings I hope come to pass.

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

Paying for Cancer: Help for the Uninsured, Underinsured, and Insured Among Us

Cancer is expensive and this just adds to the stress and strain already in the life of the cancer patient and their family. There IS help available whether you are among the growing ranks of the uninsured or the under-insured, and there's also help for people with insurance. You will have to do your own paperwork, phone calls, follow up calls, jump through plenty of hoops and maybe overcome a few hurdles, but there is help and there is hope. You will have to prepare to be your own best advocate; no one else will be able to do this for you (probably). Get ready, get set, go!

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:  (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

His Mysterious Ways and True Beauty

This is copied from a note I wrote August 23, 2011. I think it needs a broader audience. We all need a reminder of what "true beauty" and "true handsomeness" really is:
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

Where Is The Peace of Mind?

I love what I do. I love the people I meet and the conversations I have. In an odd kind of way, I love the doors God has opened for me since melanoma came into my life in July 2008. I love and appreciate that God has found a way to use this rocky road in a way that can diminish for others that which seeks to diminish me. And it brings me a sense of peace.

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

Rats! I really don't like that phrase! Nobody ever looks at a scrumptious piece of cheesecake with a steaming black cup of coffee beside it and utters, "It is what it is." Nobody gets excited over being told, "It is what it is." I get tired of hearing it. But, alas and alack, it fits. Rats and garden peas.

"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

Cancer Changes EVERYTHING! Including Christmas

When "cancer" enters a life, that life is rocked and that world is turned upside-down and inside-out. It's wrung like a drenched towel until all the soul has dripped out. But the towel is still there waiting to absorb new life and a new "whatever is coming next." People, including our nearest and dearest, just don't understand the changes we go through and how can they when we don't understand them ourselves.But we are blessed and we know it in ways we never would have without cancer.

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

Christmas Meanderings

I never cease to be amazed at how many people are more concerned that they be told "Merry Christmas" by the consumer-driving and money-crazy retail world than they are about the people in their own town who are hungry and need to be fed. How about spreading some "Merry Christmas"? How about living the Christ of Christmas?

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'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

There Are "rocks," And Then There's "The Rock" (of course, there are also pebbles)

I'm not talking about the professional wrestler. I'm talking about the "Rock" Isaiah refers to in
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 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

All I Want For Christmas Is...

Peace in the valley. Oh, wait. That's what I'd tell my kids when they were growing up when "gift-giving-time-to-Mama" rolled around. (Yes, I know "kids" are baby goats. I'm aware of my vocabulary).

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.

Pay Attention To How Your Doctor Treats You! OR Finding the Right Dermatologist!

Please read this to the end, no matter how unnecessary and unrelated to your present needs you may find it. It may just save your life one day. Tuck it away.

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:

There are wonderful, knowledgeable-about-melanoma doctors who are our first line of defense.

And I am grateful.

Thursday, December 1, 2011

Psalm 23 From Another Angle

The LORD is my Healer; I am in His care.
 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.