Saturday, August 25, 2012

Livestrong Lance Armstrong!

By now, we know the latest news from the world of sports about Lance Armstrong and I'm not going there.What I want to do, instead is honor a man who persevered as a cancer survivor and has done a world of good in the world as a cancer survivor. I got curious about a few things. Though he seems to have acted dishonorably in the sports world, how does his performance in the cancer world stack up?

I registered at Charity Navigator and compared Livestrong (The Lance Armstrong Foundation) with the American Cancer Society and the Melanoma Research Foundation.

Before I copy/paste what I found, let me share this with you, copied and pasted from Charity Navigator explaining what numbers should be high and which ones low:

"Organizational Efficiency:We assess four key indicators to determine how efficiently and responsibly a charity functions day to day.
1.Program Expenses: Percent of total functional expenses spent on programs and services. (higher is better)
2.Administrative Expenses: Percent of total functional expenses spent on management and general. (lower is better)
3.Fundraising expenses: Percent of total functional expenses spent on fundraising. (lower is better)
4.Fundraising efficiency: Amount a charity spends to raise $1. (lower is better)

We combine the scores in these four categories to obtain an overall efficiency score. Based on the score, we assign a rating of between zero and four stars to each charity (four being the highest)."

OK, now to compare. The chart, in its entirety, would not copy/paste well into this blog, so I'll have to do it one charity at a time. Sorry, I tried. To make your own comparisons of charities you have to register, add charities to your "My Charities," and then, from that page follow instructions.
 
Livestrong (The Lance Armstrong Foundation):




Program Expenses 80.4%
Administrative Expenses 6.1%
Fundraising Expenses 13.3%
Fundraising Efficiency $0.14
Primary Revenue Growth 3.6%
Program Expenses Growth 3.5%
Working Capital Ratio (years) 2.60








$321,821   1.01% of expenses   Douglas Ulman President  (salary)






American Cancer Society:
Program Expenses 70.8%
Administrative Expenses 7.2%
Fundraising Expenses 21.9%
Fundraising Efficiency $0.23
Primary Revenue Growth -5.1%
Program Expenses Growth -0.6%
Working Capital Ratio (years) 1.12





$2,081,246      0.21%  of expenses  John Seffrin  Chief Executive Officer

(salary)



Melanoma Research Foundation:



Program Expenses 89.9%
Administrative Expenses 7.2%
Fundraising Expenses 2.7%
Fundraising Efficiency $0.02
Primary Revenue Growth 3.9%
Program Expenses Growth 12.1%
Working Capital Ratio (years)   0.55  

$160,000      5.55% of expenses  Timothy Turnham  Executive Director (salary)

There's much more information that can be looked at but I chose to not get into it any heavier than this for space sake. For the record, both Livestrong and Melanoma Research Foundation are rated as 4 Star charities and the American Cancer Society is rated as a 2 Star.

About Lance and his cancer, this is copy/pasted from Wikipedia:
"In October 1996 he was diagnosed as having testicular cancer with a tumor that had metastasized to his brain and lungs. His cancer treatments included brain and testicular surgery and extensive chemotherapy, and his prognosis was initially poor. In 1999, he was named the ABC Wide World of Sports Athlete of the Year. In 2000 he won the Prince of Asturias Award in Sports. In 2002, Sports Illustrated magazine named him Sportsman of the Year. He was also named Associated Press Male Athlete of the Year for the years 2002–2005. He received ESPN's ESPY Award for Best Male Athlete in 2003, 2004, 2005, and 2006, and won the BBC Sports Personality of the Year Overseas Personality Award in 2003. Armstrong announced his retirement from racing on July 24, 2005, at the end of the 2005 Tour de France but returned to competitive cycling in January 2009 and finished third in the 2009 Tour de France. He confirmed he had retired from competitive cycling for good on February 16, 2011."

Did he use performance enhancing drugs? I don't know. Frankly, to have raced at all after going through all he went through to live and to race, I'd be surprised if he didn't. I can't imagine having the stamina and ability to compete, on any level, after those surgeries and treatments without major "help." It would have been nice if he had been upfront, from the beginning and said, "I'd like to compete but cancer has drained me, can I use "this" to help?" IF he did, indeed, use drugs. Maybe allowances could have been made. Again, I don't know and I'm not sitting in judgement.

I just want to say "thank you" to a man who, while he may have made a series of grave mistakes and misjudgements, in the world of sports, has made major contributions in the world of cancer. Livestrong is a great organization and they also have a great website.

Thank you, Lance Armstrong.

Live strong

And be grateful!

Friday, August 24, 2012

"You Weren't There To Save Harry"

There's a scene in the Christmas Classic It's A Wonderful Life that sums up how important we each are, how we impact one anothers' lives whether we know it or not, and how the choices we make influence history. The fact that we are here influences history and in ways we'll never know.

It's a scene that has impacted my own life and have given me many moments to pause and consider my choices.



We make a difference. It can be a positive one or a negative one and usually we do both over the course of our lives.

Who is your "Harry?"

"Saving Harry" propels me in the worlds I reside in. I want Harry to thrive and prosper, live large and just plain "live" so Harry can save other drowning people.

But if I don't save Harry, how will that ever happen?

We each have a job to do and a role to play while we're here.

Be grateful and go save Harry.

The Source Of My Hope

While the obvious answer is "God," there's more to the story than that. God worked, through the years, to get me to the place so that when melanoma entered my life...or should I say, "steam-rolled in," He was the only logical place for me to put my hope. All alternatives scare me silly.

I was brought up in church. Conway (North Carolina) United Methodist to be exact. There every Sunday. Sunday school, too. Later active in the UMYF (youth group), sang in the Junior Choir and then the Chancel Choir. Even played the bells a few times. I was on the Administrative Board and held several positions over the years. Taught Bible School and Sunday school. I prayed, read my Bible, and had what I would call a reasonable trust and faith in God.

But those weren't the times that drilled into me that He was my source of help in times of trouble.

Real life taught me that. Seeing God prove Himself faithful taught me that.

Conway's a small town. One stop light. Literally. Though there aren't too many businesses now, when I was growing up we were a thriving little town with right many Mom-and-Pop stores and gas stations. Like all kids, I made the rounds and was known at every one of them. We walked or rode bicycles everywhere around town. The idea of getting our parents to drive us across town...well, that just didn't occur to us. We walked. Unless we were going to spend the night or had our Barbie collection going with us to play.

I can still see this. I was at the stoplight, crossing the road. I was maybe 9 or 10, and halfway across I look to my right and there's a car barreling straight at me showing no signs of slowing down and they have a red light. I froze. Right there in the middle of the road. I froze. I knew that car was going to hit me and I couldn't move. It was like something in a TV show except this was real life. The next thing I knew, the car whizzed by and I was standing on the side of the road in the grass. To this day I have no idea how I got there. I don't remember moving. But I got to the side of the road and to safety. To this day I credit God with providing me an angel to get my butt out of the way of that car.

When my daughter was roughly 6 weeks old (31 years ago), she was already on cereal to help her sleep through the night. I don't think doctors recommend that now, but her's did then. She started on cereal at 4 weeks. On this particular night I had added a little bit more because she stayed hungry. I had put her in her crib, on her stomach...I don't think they recommend that anymore either, but at the time that's how babies were laid down...and I went to wash dishes. I ALWAYS waited an hour or so before going to check on her. On this night I had barely turned on the water to fill the sink when I had this strong urge to go check on her. I ignored it. It was way too soon. So help me, the feeling got stronger and then I got the distinct feeling that I was being reeled into the bedroom. Seriously. It was like I was on the end of a fishing rod and some unseen force was pulling me to her side. Even in the dark I could see white where her face was. She had thrown up that cereal and was laying in it and couldn't get her face out of it. It had clogged her nose, some was still in her mouth, she couldn't and didn't cry UNTIL I started frantically wiping her face off and her eyes...it had her eyes closed and I guess the pressure of me wiping her eyes clean and getting it out of her mouth and nose...she was able to cry. And I knew she'd be all right. I shudder to think what would have happened had God not sent an angel to reel me to her crib that night. And I do credit an angel.

As a matter of fact, I named my angel "Herbert."

Eight years later Herbert was dispatched, again, to our rescue. I was pregnant with College Kid, not very far along, and one night the three of us, hubby, daughter, and myself, were a few miles from home, it was dark, and we were riding in deer country. Sure enough, as if on cue, a large deer decided to cross the road as we were riding by and ran right into my passenger-side door where I was sitting. The deer kept moving, but the hit was hard. We were in a really dark area so we went on into town and just knew my door was crushed. I was surprised the door wasn't pushed into my lap, but when we got to town and Mitch got out to survey the damage, I didn't even try to open my door to get out and look too because I just knew the door wouldn't open. The total damage? About a half an inch scratch where the deer hit. Not even a tiny dent. A small chip of paint missing. That was it. I will always believe an angel took the brunt of that hit.

Not quite a couple of years later I started noticing little blurbs in different magazines discussing the difference between grand mal and petite mal epilepsy. About the same time my daughter was having "episodes." She'd be doing something then stop, her eyes would look to the side, her skin would turn gray and her ordinarily pink lips would take on a grayish hue. This would last several seconds and when it was over she would pick up right where she left off with whatever she was doing and have no recollection of zoning out. She couldn't hear when this happened so I couldn't snap her out of it. I read a little two paragraph blurb in Reader's Digest and thought, "Jessica does this." A month or so later I read another similar blurb in Family Circle and the thought was stronger. October of that year I read yet another little article in a Woman's Day and made an appointment with her pediatrician who sent her to have an EEG which revealed she had childhood petite mal epilepsy. I've never read another article about this in a magazine. I did my own research on it, but no more well-placed articles with the nagging thought of my child showing symptoms. But when I needed them to nag me into action, they were there and in magazines I read. God truly works in mysterious ways but we have to pay attention. For the record, God opened doors as she needed them opened to help with school, diet, medicine, and keeping her dreams on track. While this caused her math ability to totally tank, she was epilepsy free well before her 20th birthday. Her dr warned us that the genetic marker could stay with her till then but it didn't, her math got back on track, and today she is a licensed pharmacist with her PharmD, married with a little girl of her own.

In October 1999, about 8 am, I had taken James to school and was almost to work. A car made a left-hand turn right in front of me and I do mean right in front of me. I saw the car, stopped, in the center turn lane. The driver of the car didn't see me though. His windshield was fogged over and the morning sun was coming through that fogged-over windshield and he couldn't see a thing. But he made a left hand turn anyway and there I was. I heard metal, felt the car moving. I honestly didn't know what was happening it happened so fast. When the car got still I noticed "smoke" and was scared the car was going to blow up so I got out fast. That's when I realized my airbag had gone off. My forehead had hit the windshield. I knew that by the big knot on it. I never felt it happen. I had a huge green bruise over my heart but I never felt that happen either. I never felt the impact of the airbag fracture my left thumb in two places either. My whole left hand was a brilliant pink. I couldn't feel it.

Long story short, this was on a Friday morning and the local hospital ER staff x-rayed my hand, read the x-rays wrong and said I had crushed my knuckles so they put what turned out to be the wrong kind of cast on my hand and that wrong cast was there through the weekend until I saw an orthopedic surgeon Monday morning who removed it and took his own x-rays. My knuckles were fine, 'twas my thumb that was fractured in two places...right above and right below the joint where knuckle meets hand. When I left I had a very different looking cast than the one he had removed. This cast was temporary though because...

I also had an appointment to see him again that Thursday to have the cast removed and two pins put through my hand. He said my thumb would heal better that way. Okay. I don't like medical procedures and was normally a big baby with a well-established history to back that claim up, but I could do that.

Except every time I thought about that procedure I literally got nauseous. On Tuesday morning I called, cancelled that appointment and I did see him Thursday so he could replace my temporary cast with a permanent one. He wasn't happy with me one little bit and I can still hear him say, "You're flying in the face of the best medical advice I can give!"

Well, I flew. When I went back later to have the cast removed it was the most awful thing I'd ever felt! I'd never had a cast before but I knew it wasn't supposed to hurt to have them removed. This was tortuous agony. It was so bad the nurse who was doing the sawing had to get me to lay down and still asked if I wanted her to stop. Well, yes I did but the cast had to come off and sawing was the only way. It shook every nerve in my being. Due to the nature of the cast, my thumb was sticking out and the cast had to be pulled off of it. Why didn't they just shoot me first? It was horrible!

When my ortho guy came in he took one look at my castless hand and pronounced, "RSD has set in." Huh? Never heard of it. I had what they lovingly call a "line of demarcation" where my fingers had stuck out of the cast and there was a brown line on each of them. I had to do my own research on Reflex Sympathetic Dystrophy and didn't like what I learned. It is what it is. But it sure explained my raw nerves. To this day I can still feel vibrations and they can be awful. But I digress.

I had to have physical therapy to get my thumb back to as much normal as possible. Casting really wasn't a good choice considering my fracture...but it was a great choice considering my RSD! I had to go back to my ortho to get set up for PT and for him to check my thumb. He looked at me and said VOLUNTARILY, "You must have had a little bird sitting on your shoulder when you refused those pins. They would have made your RSD much, much worse."

Wow!!!! My RSD was bad enough as it was and fiery! So much so that I had to have a nerve block in February 2000. It should have been a series of up to six nerve blocks. I had one. I went to the hospital and as the anesthesiologist is doing what he has to do to get me set up, I tell him not to tell me a thing unless there's something I have to do, Otherwise, don't tell me anything. I told him what a baby I am. So I'm laying there with this arm-length blue tourniquet on my left arm and IVs in both hands and a nurse I know at my right side. There's a clock on the wall I can stare at ahead of me and I stare. Man do I stare, And pray. Early into the procedure the doctor told me he was going to adjust the tourniquet so it wouldn't be so bad. He started making his "adjustment" and I couldn't handle it. It was much worse. He was stunned. This was supposed to make it better and he'd NEVER had anybody beg him to return the settings to what they had been! But he did. By returning the settings to what they were, I took all the medicine...he had never, in hundreds of nerve blocks he had done (he said hundreds) had anybody take ALL the medicine like I did. He had kept a close check on my hand's coloring and kept pronouncing it "good." I kept praying "God we're doing good. You're doing good. Keep it up." I guess he and my nurse thought I was nuts, but who cares? When I was done, he told me, "You talk like you're a baby, but you're not. You're tough as nails."

Back to my PT. To me, this is simply awesome. RSD changes all tissues in the area it's in and has to be treated very differently in a physical therapy setting. "No pain, no gain" isn't the mantra for a person with RSD. When I started my PT for my thumb my RSD had to be taken into deep consideration or it would be made worse. Three weeks before I even knew I'd need PT God brought Heidi to the place I'd be doing PT. Heidi was a recent college graduate, from Florida, with her degree in PT and a concentration in RSD! She was getting married in NC in April, couldn't find a job in her fiance's city and the ONLY PT job she could get at the time was where I would be going and she was MY physical therapist! She knew all about how to handle my thumb and my RSD at the same time! And when I finished my second six-weeks round of PT she left a few weeks later for a job closer to where she'd be living once married.

Even when I had no clue I'd be in need of a specialized physical therapist, God knew, made arrangements, and she was with me for the time I needed her and then she moved on as did I. That STILL gets to me!

God didn't bypass RSD simply because I'd never heard of it, but He made a way through it. Twice that I know of. And that's not counting my PT. So when melanoma became part of my life, I already had a fairly strong history of God showing up and helping me when I needed it. Even when I didn't know I needed His help.

All this to say that fear and other emotions become part of the melanoma package. How's that for a nice, clean segue? In the beginning, after my diagnosis, fear and panic were constant companions. Four years into this journey fear rears up a month or so before every appointment of any kind. I know what I live with and it is what it is. I'm also very active in the online melanoma community both in front of the scenes and behind them. I know what a lot of people deal with. I know layers of fears that outsiders don't understand. Very real fears. And I know honest emotions, too.

I've lost patience with religious facades that hide behind false piety. Yes, I believe in miracles. Yes, I believe in the power of prayer. Yes, I believe in the power of Jesus' name. Yes I believe. But I also live in the real world and God's God of the real world.

People with very real and very strong faith will get a cancer diagnosis today. People who pray and people who believe will watch loved ones die today. And people who pray and believe will do their own dying today. And they will be people of all ages and all colors and races. Death will not take a holiday or look the other way because of "faith." Neither will cancer in general or melanoma in particular.

Our fears are real and God can handle them. Our faith is real and God can grow it and when we don't have faith, God can help it take root and develop.

But if I've learned anything, I've learned to be blunt honest with God about where I am at any given time and often I'm not in a pretty place. I've learned God knows my heart and God can handle it and me even when I don't think I'm too "handle-able." The only way God can move me from where I am to where I need to be is for me to give my heart voice. And if the tears come along for the ride, fine. That usually happens. And anger hops on the train. Fine. And sometimes my language has a few too many "rats" and "garden peas" and even some "dangs" and yes, God listens and He'll take me to task and I apologize but that's part of the process. We cut through to the chase where God can get through to me and we move on. I'm the designated Hotel Melanoma Chaplain Boss Queen and I need my own chaplain and God's it. He understands because He's called me to this place and is using my melanoma journey. We're traveling companions and like any traveling companions that have traveled together for almost 53 years, we can get on each others' nerves. And I lash out at what's around me and He holds out the glue to put me back together. And we travel on. Where I am can get to me, but I wouldn't trade where I am with anybody for anything. And I can get on God's nerves I'm sure.

But God is Who God Is.

He Is the Source of my Hope and the foundation of my strength.

And when all else fails, He never fails.

And I am oh so

Grateful!

Wednesday, August 22, 2012

Don't Stop Believing And The Voice Of Experience

Words, and songs, have different meanings depending on who is speaking and singing. While I love Journey's Don't Stop Believin', it, somehow, resonates as true when it comes from a stage 4 melanoma survivor who has been NED (no evidence of disease) three years. When Mark says "don't stop believing" I don't stop. When he encourages someone who is depressed, scared beyond belief, and facing the almost unfaceable, we know he's the voice of experience and we don't stop believing. There are many more who give those words of hope and encouragement because they are living proof that living with stage 4 melanoma and being NED for a long season happens and it's happening more and more. As a matter of fact, another stage 4 melanoma survivor who is currently enjoying her own season of NED is up in arms because melanoma research sites aren't updating their pages to reflect this. Voices of experience are speaking up and speaking out and they will be heard.

There are other voices of experience. Voices who never stopped believing even when their warriors died. They truly believe they'll be reunited one day. They truly know their loved one battles no longer and is truly cured and whole. And, man oh man, do they truly miss their loved one. And they have voices of experience that speak words of how to get through this time with the warrior so you'll be better able to cope when the time comes to continue without him or her.

I want to share a post from a woman whose husband died from melanoma three years ago. I'm taking names out but otherwise this is exactly what she shared. And, it has resonated with men as well as with women. This wisdom will help anybody who is in this thin place, or will be one day, no matter what the disease or condition:

I am writing this as a widow. I have made many friends on this journey of melanoma and loss. I see many familiar names and want you to know that I continue to keep you in my prayers. I want to share some ideas, for those still in the battle and their family:

take videos, keep the camera rolling, record every day conversations, buy recordable cards and have your loved one s
ay "I love you".


take pictures, holding hands, hugs, kisses, even tears. A special photograph I have, is me lying next to _____ in the hospital bed.

trace your loved ones hand, you could make a family hand book, or quilt
I bought one of the baby keepsake mold kit that you can place a baby's foot print or hand print in. I had my husband place his hand in it. Three years later, I can still put my hand in his.

Clip some hair. You could put it in a locket. I bought lockets for my girls and had my husband write "I love you" on the inside of the locket.

Build-A-Bears with a voice module. Your loved one can record a message.

If your loved one has several blankets, rotate the ones they use, afterwards your family will have a blanket that provided comfort to their loved one

Record the love you have for them and let them do the same thing. It will mean so much. You will not have to say..I wish they knew how much I loved them, how important they are, special memories that will last forever.

Hearing is the last sense that leaves. I am sharing some of my last words of love for _____...

I love you, _____
You are a wonderful husband, you never disappointed me, you have given me enough love to last a lifetime
I sang his favorite song
I told him that I would be okay, that the angels were waiting to take him home. I told him to go to God.
(I know that he heard me).... he had one final tear and then his last breath was so peaceful. He was a kind and gentle soul and he left me with a passing so sweet. I have his last tear in a special box.

Little things can bring comfort
Personal items they used
deodorant, soap, favorite t-shirts
Simple, yet profound, advice from someone who has been there and will never leave there. 
We would do well to listen to our voices of experience. In life. In death.
Don't stop believing.
Be grateful for those around you that provide encouragement from the depths of their experience and pain.
We will surely walk in their footsteps one day.
Charis

Monday, August 20, 2012

There's ALWAYS Hope!

I said that just this morning earlier and I meant it. We live in a world where we need hope, need it yesterday, and need it desperately. Hope in the face of disease. Hope in the face of death. Hope in grieving. Hope "things" will get better, whatever the "things" happen to be.

Hope.

I live in the world of melanoma and while I mortally despise this disease and the toll it takes (and that toll is growing at a rapid pace and I hate that, too), I dearly love the people I encounter and the ones I have yet to meet. While I know melanoma well, this post isn't just for those who live in that world with me. It's for all who need Hope. Please forgive me, though, if my words should reside in that place. The thoughts behind my words are flying free of melanoma constraints.

There are many things that have no cure. At the moment. Melanoma, right now, has no cure except the one, or ones, known only to God. But there is hope for that cure! There are other diseases, conditions, and plights of this world that seem to know how to avoid being "cured." But hope for those cures and the ability to live into those cures abounds.

We hope for that cure. We hope for more and better treatment options. We hope for better days and hope for strength to get through the day we have before us. We have high hopes for the people around us and those we love. We have hope that the world will catch onto the dangers of tanning beds and unprotected sun-fun and that our numbers will decrease into non-existence one day. We have hope as more genetic codes are unlocked and we have hope that more will continue to be learned about how this disease operates because the sun and tanning beds are NOT the only factors. We hope to be the last ones in our families who get this diagnosis. We have hope of our words, stories, and lives making a real difference. We hope people are listening and changing their ways. We hope for the day when parents no longer bury their children because of this highly (though not always) preventable disease. We hope for the day when children no longer have to grow up without a parent due to this disease. We hope for the day when spouses no longer have to try and put their hearts and lives back together without their soul-mate. We hope for the day when brothers and sisters no longer have to navigate in a world without the people they grew up with. We hope that medicine will be able to halt the transmission of this disease across the placenta so women who want to bear children free of disease can and they won't have to make gut-wrenching decisions like they do now.

We hope. And we are blessed. We have seen some of our hopes realized and that gives us hope that other hopes will be realized as well. We've seen research bear real fruit these past two years and we've seen people benefit greatly from partaking of that fruit. Lives are extended. Tumors are shrunk, some are stabilized, others are stopped dead in their tracks, others are forbidden to start. We've seen people living longer and better lives at ALL stages! And while there's no "cure," we see this disease being beat back while those fighting the hardest battles are able to push through. Some, not all, but the numbers are growing.

And we hope. Hope keeps us going and we never give it up. Hope is a precious commodity. There's always hope. And when our mortal hopes fade away for more of life in this world, we have the hope of Heaven to hold onto. There's always hope.

The writer of Hebrews has this to say in Hebrews 11: 1 
Faith is the confidence that what we hope for will actually happen; it gives us assurance about things we cannot see.

Faith and hope work together with God in the mix and God is faithful. We will not be disappointed.

Hope is a gift from God, waiting to be opened, used, cherished.

Paul writes in Romans 15: 4b, 13
And the Scriptures give us hope and encouragement as we wait patiently for God's promises to be fulfilled. I pray that God, the source of hope, will fill you completely with joy and peace because you trust in him. Then you will overflow with confident hope through the power of the Holy Spirit.

Friends, there's ALWAYS hope because there's ALWAYS God!

Search and read the Word for hope and encouragement to get through the days and seasons ahead. And may you experience the joy and peace that comes from trusting God no matter what. Then overflow with confident hope through the POWER of the Holy Spirit, the third Person of the Holy Trinity.

And be grateful that God gives us that kind of hope. That's some powerful stuff!

Thanks be to God!

Charis

Friday, August 17, 2012

I Love Hospice, But...I Do Have a "Tsk Tsk"

I have given my HM CBQ (Hotel Melanoma Chaplain Boss Queen) Tsk Tsk to people in general, doctors, including Mercola and Oz, the Tanning Industry, tanners, The Insurance Industry, everybody I can think of and just when I thought I had given my last tsk tsk, I find there's one more yet to bestow. This one's hard.

Hospice. I love Hospice. I've served as a volunteer. I say I've been "volunteer chaplain" but their paid chaplain might not appreciate that. But that's the role I played. My mother-in-law received Hospice care as she died. I've got firsthand experience with Hospice from these two angles. I also have second-hand experience with Hospice through people I've come to know, love, and respect in my Facebook ministries as well as people I know in "real life" who have dealt with Hospice. I own and recommend Hospice books. I love Hospice and have learned much from them both about myself and about death and dying.

I've come to have one very real issue that needs addressing because I'm giving Hospice the benefit of the doubt and assuming they don't realize how this comes across. What "this" is I'll get to in a minute.

First, we may need a little basic understanding of "Hospice" or "hospice." One is something of a business and can also be a facility; the other is a concept. The business or facility can be either a private or public one. Wikipedia is helpful with sorting this out succinctly, in giving the history of Hospice, and what it looks like around the world. Just doing a simple search for "hospice" can be revealing, educational, and maybe even somewhat startling.

Simply put, Hospice or, as it's sometimes incorrectly called "Palliative Care", addresses end-of-life issues as it serves a person and his or her family during the last six months to a year of life. Usually it's six months, but that's not a given. An important note: palliative care is NOT synonymous with hospice. It can lead to hospice, but palliative care is discussed here.

Hospitals now offer their own programs, and there are private businesses as well as public programs that are often offered through individual counties. Each will have their own codes and standards. Payment plans, who pays what, standards of care, who does what, what the patient can and cannot do while enrolled in their program...all are things that can vary from place to place, even ever-so-slightly, and all are issues that need to be known by the patient and their family. These policies are readily available. Ask. Don't sign anything until you've read everything you can about the place you want to be in charge of your death or the death of your loved one. That's what we're talking about: who's in charge. Humanly and corporately speaking. This isn't a "God's in charge" post, though, of course He is, but when it comes to Hospice, people are dealing with policies and they need to know and understand them.

The American Academy of Family Physicians has valuable info and links applicable to this post are here. You'll find reasonable expectations and standards to hold up to and against programs you may be looking into.

OK, now this link is to a pdf file from the Hospice Association of America, Fact or Fiction: Learning the Truth About Hospice. I suggest looking around the entire site. This isn't the ONLY Hospice Association though. There's the National Hospice and Palliative Care Organization, Hospice Foundation of America, International Association for Hospice and Palliative Care, and individual states may have their own Hospice Associations. Again, do a search.

Research your options in your area and from your hospital.

Now, my tsk tsk. Hospice folks, you can be too demanding, controlling, and authoritative at the times when people are at their most vulnerable. Usually it's more a matter of individual, personal tone and not actually policy that's the problem. But if you really do have a policy that prohibits your patients from emergency hospital care or they lose your services, that's a problem and worthy of my HM CBQ Tsk Tsk and I don't hand those out lightly. Especially to you, Hospice.

People who have already been told that their health issues are so serious and extreme that they'll probably die within six months (maybe up to a year) are in a vulnerable, frightening place. Emotions are running at the surface and you know that. You do a great job in providing help and services with this. That's your job, though. BUT, but, there's no set script they're adhering to as this happens. Emergencies can arise. I'm thinking specifically of one scenario I know about. The patient is in the depths of stage 4 cancer and just beginning Hospice. In the middle of the night the patient has a stroke. In the middle of the night the patient and family are now faced with the decision of: do we go to the ER and seek help, OR, do we stay home. See, if they stay home, they can keep Hospice! If they go to the ER, they will not have Hospice when the patient returns home, still dying, but still fighting death.

Come on, Hospice! That's not right or fair! Reading various online policies, I can see that scenario happening over and over in many families and it shouldn't. Part of the problem may be a curt tone when the family care-giver calls Hospice to find out if they can go to the ER. But part of the problem is also an understanding of policies. While policies may, indeed, state that Hospice works with doctors and wants patients to see their doctor, policies can also state that if that happens, they lose Hospice care...though that care can be reinstated later.

I know you're in the business of helping people die comfortably and at home. Going to the ER for another life-threatening situation that arises, or even for sudden complications with the situation they're dying from, jeopardizes that. That trip will prolong life and that trip relieves you of some control. But the patient and family need to be able to make that decision with your support no matter what they decide. It shouldn't be an either/or situation. The patient will come back home and the patient will, probably, still be dying and need you. Can't you give them that much?

There are probably other areas that you need to loosen the reins in. Policies will vary at each Hospice/Palliative Care, even if ever-so-slightly.

Just, please, remember you're dealing with fragile, vulnerable souls. People know death is coming. They are living with that reality every day.

Do no harm.

Make them grateful that, at the end of the day, you were chosen to help them and walk with them during this thin season.

Even when it means walking with them to the ER.

Thank you.

Charis

Thursday, August 16, 2012

Three Months Until The Charlotte Aim Hug-A-Thon!


With healthy doses of crying, kissing, laughing, singing, dancing, and talking thrown in for good measure. Oh, and Aim at Melanoma might be expecting us to do some walking or jogging. Yeah, right. I, personally, think we'd do well to concentrate on making this an official Hug-A-Thon.

November 17th in Charlotte NC, melahomies from around the USA will be gathering to give each other the hugs and encouragement that we give each other, daily, online. Time to bring Facebook to real life and I, for one, am ready!

I have blogged about this four times already and this may well be my last post about it. Here's a link to the fourth and there are internal links to the other three.

This will be an event like none other! Read the other blog posts to get a load of who will be there! Plan to join us and be a part of our after party where we'll continue getting to know each other and sing our songs! The hugs will begin Friday November 16th for those of us who arrive early. They will continue on into Sunday the 18th when many of us start heading home.

Friends, we're milking this for all it's worth! If you haven't made plans to join us, now's a good time to do it. These three months will fly! We're already making plans on which 5 or 6 songs we'll sing so we can make booklets folks can keep.
 
Here are the songs we're thinking about and seek input from people who plan to attend and sing with us:
 
The Wallflowers' “Heroes” 

The Temptations' “My Girl” 

Bob Marley's “Three Little Birds”

Bruce Springsteen's “Born in the USA”

Jimmy Buffet's “Margaritaville”

John Mellencamp's “Hand to Hold on to”

We're staying at the Double Tree Inn in Charlotte, NC and here's the info:
 
6300 Morrison Boulevard
Charlotte, NC 28211
Tel: 1-704-364-2400   
Fax:  1-704-362-0203

**A block of 25 SUITES is reserved under “AIM Walk” for $109 a night**
Each suite is comprised of over 700 square feet and includes separate living room (with queen size sofa bed), bedroom, and full kitchen.  Bedrooms with King beds or two Queens are available.
**Rooms must be booked by November 2, 2012.

Hotel Property Code: CLTDTDT
Group Code: 60X

Three months will fly! See you then! 

Be ready to hug. You'll find me bringing up the rear at the Walk on Saturday Nov 17th. I'll be hugging my way around. We're going to raise plenty of money. Yes. Aim will be proud and pleased and Anne Bowman will be astounded as she sees her work be unbelievably fruitful.

And if someone brings me a big box of Kleenex, I'll be most

Grateful!

Wednesday, August 15, 2012

Miracles, Hope, Cure, Fight...And Butterflies

As I've written many times, I live with one foot in the church and one foot in the world of melanoma and often those two places cross paths. As well they should. A vast majority of the people I meet on my melanoma journey are people of faith; Christian and Jewish. Some have come to faith, or renewed their faith, because of  melanoma. As such, we have an unique word to speak into the fears, worries, pains, hurts, deaths, questions, and doubts of melanoma world. And to our hurting world at large.

Miracles are never far from our minds. Rich re-shared this Hotel Melanoma post today recounting his own. We see miracles all around us. We need these miracles. We need to share them and they take many forms. We pray for miracles of "healing" and we mean "cure" and sometimes we do get those precious miracles. We know a time of "no cancer." We live longer than medicine dared hold out hope for and we know good health. It may really be a time of unexpected remission and we'll take it. The fight is now in a time of respite and that is good. Our miracles may come in the form of making peace with God or people. They may take the form of coming to grips with our humanity and mortality. They may take the form of intense and grueling treatments kicking in at the last minute causing tumors to shrink and forbidding new growth. Our miracles may look like doing the impossible and facing the unbearable and finding that we can do that which we thought was un-doable. Our miracles may look like us "carrying on" though we don't know how we are.  Our miracles may look like people as needs are met and support is given and tears are shared and pain is held. Often God uses people to be the vehicles for His miracles. Sometimes in the sharing of our own miracles, we offer the miracle of

Hope. Hope is never far from our minds either. We need hope to stay in the fight. Is it worth it? Can I do it? Yes I can because you are. Can I see better days? Yes I can because you are seeing them. Can I run this race before me and pick myself up when I fall or when I get tired? Yes I can because that's exactly what I see you doing and you give me hope. Is God going to carry me through this and open the doors I need opened? Yes God is because I see God doing that for you and that gives me hope that He will do that for me as well. When we share our stories of what we're experiencing, living with, overcoming, beating back, enduring...we give hope. When those with stage 4 and battling active disease take the time to tell those of us who are not stage 4, "Look at me, see what the fight looks like and know that it's worth it. Life is a true gift and you better value that gift and each day because once a day is gone we don't get it back. The fight is long and hard but it's WORTH it! And God is faithful in the fight. Hang on to the hope He offers." When they tell us that and model the fight for us...they give the world the gift of hope. God offers us hope and often He offers it to us through people and in sharing our hope we hold out hope for an ultimate

Cure. That's what we're all hanging on and hoping for. We want that all-elusive cure to put a final end to this awful disease that puts an end to far too many and wants to put an end to us as well and to those who have yet to join our ranks. We pray for a cure, work for a cure, walk for a cure, advocate for a cure. We do everything we can think of to raise funds for melanoma research so there will be a cure one day. Right now there isn't a cure. There are more and better treatment options. But no cure. There's no one-size-fits-all option either. We humans, for all our "samenesses" have too many unique differences and can make a "cure" seem like a pipe-dream. But we dream anyway. We've seen miracles and we have hope so we know that a cure really isn't too far-fetched but until then we

Fight. Fight active disease and fight to stay NED. Fight to hang on. Fight death, fight for insurance coverage and for claims, fight for tougher tanning bed laws and fight against the idea that tan is healthy and beautiful. Fight against ignorance and fight for truth. Fight to get word out there that melanoma is deadly and not just skin cancer, it targets ANYBODY regardless of race, creed, sex, ethnicity, age, bank account, or tanning history be it in sun or bed. We fight so you don't have to and so future generations won't have to.

And there are butterflies that exist to give us hope in the fight, a glimpse of what a miracle looks like, and to let us know that transformation (cure) isn't a dream after all but a real possibility. The butterfly is a very real symbol of hope and possibility in the melanoma community. 

Go to either Google or Yahoo, choose "images" and then do a search for "melanoma butterfly." Be pleasantly surprised and smile. Martina McBride has a song She's A Butterfly. This particular video of that song features a young cancer patient. God bless the butterfly.

Be a butterfly. Speak of life, share the miracle that you are, offer hope, pray and work for a cure, fight the fight set before you and model that fight for others giving hope till there's a cure and we see your miracle and we remember that life is worth it.

Be a butterfly. Transform hopelessness into a flight of fancy and dreams worth dreaming, breaking free of melanoma's cocoon. Spread your beautiful wings and fly bringing smiles to faces and joy to hearts.

People of miracles

People of hope

People of God

People and Butterflies

Charis

Tuesday, August 14, 2012

Melanoma Is Linked To Other Cancers, Not Just Breast And Pancreatic

I've covered the breast cancer link.

I've covered the pancreatic cancer link.

I thought: "What if there are other links to other cancers that we with melanoma, or a family history of it, need to know about?"

And, it turns out, there are. Prostate for the men and non-Hodgkin's lymphoma for everybody, as well as the other types of skin cancer.

People with a family history of melanoma need to be especially aware of the genetic predispositions you now have for other cancers and conditions. I strongly advise looking at these two sites of genetics and cancer information! All of this is too important and packed for me to try and distill it here. And, there is much more to be concerned about than the breast and pancreatic links we are learning about. The two sites: http://www.cancer.net/navigating-cancer-care/cancer-basics/genetics/genetics-cancer and http://www.cancer.gov/cancertopics/genetics.

This is post short on the surface, but long when the links are read. These are things we must be aware of, keep up on, discuss with our medical teams and families, and pray about.

Yes, it's something else to worry about. But we HAVE to know what research is discovering! And research will discover more. I really don't want to cause additional stress or worry. Really.

I want us to know what we need to know. If we "know" it, we can deal with it. If we don't know about these things then we put ourselves and our families at needless risk.

Ignorance is NOT bliss when it comes to cancer...or anything else. We need the truth to function wisely and well.

As I ended my post about the link between melanoma and breast cancer, so I restate here:

Knowledge is power.

I am grateful for the knowledge, even when I don't like what I learn.

And I'm grateful to God for revealing these things to us through research.

May God continue to bless melanoma research and all of us!

Monday, August 13, 2012

Now, A Word to Insurance Companies From "Bossy" The Hotel Melanoma Chaplain Boss Queen

That will be Life and Health Insurance Companies that need to pull up a seat, please. Let me bend your ears. Life first.

I've got Life Insurance and had it in place well before my melanoma diagnosis. My husband and I knew I'd die one day and we wanted our family better financially prepared. Gee, I thought that was your purpose. So, imagine my surprise when a melapal of mine laments, on Facebook, that she cannot get life insurance because she has a melanoma diagnosis hanging over her head. I honestly thought she actually meant "Health" insurance and that made sense.

Nope. Seems she knew what she was talking about and she's not alone in encountering this problem. And it's a scary problem. Several friends chimed in with similar tales. That means this few are the tip of a rather large iceberg. Depending on the insurance company, they are denied coverage until they have been NED (no evidence of disease) for 2-5 years. I've even heard up to 10, TEN, years. All right policy makers, let's get real and serious here.

Every single one of your clients is going to die. Even you and the members of your family will die one day. Not a one of us knows when or how. Yes, those of us with melanoma have a ticking time bomb in us. Maybe. Some do and some don't. We never know until we know. We just happen to know what our potential ticking time bomb is. Many of your clients are, also, ticking time bombs, don't know it, and don't know the cause of their ticking. They do, however, get to be able to purchase life insurance. They could drop dead a month after purchasing and cost you big bucks compared to what they paid in...but...hey...they were covered and were able to be covered because they had no known serious health issue like melanoma.

I know you are big corporate entities whose job is to make big bucks for your stock holders, but I'm willing to give you a little credit here. Your "entity" is made up of people and I'm calling on you to remember that and be human and humane. Selling "Life Insurance" you ought to know the statistics of your clientele and that is that you are dealing with a 100% mortality rate. You also ought to know some of the emerging facts and figures regarding melanoma. Thanks to newer and better options and treatments, we're living longer and healthier. Not all of us, but some of us and those numbers are growing. A melanoma diagnosis is NOT an automatic death sentence for the near future.

Sell those policies when you are approached and there will be people who will rise up and call you blessed. And NOT at an inflated price either. Don't use our melanoma for your personal gain. Remember: you're people, too. Act like it. Be fair to people and you'll still have nice hefty profits for your share holders.

Now, onto Health. If you were half as smart as you think you are, you'd be far more pro-active than you are with your melanoma clients, particularly those who are early stagers, one and two. I know you aren't in the business to be "nice." You're in the business to make money, not spend money unnecessarily, and to put big smiles by doing both those things on your stock holders faces. So, let me walk you through doing a better job at making them happy as well as your clients with melanoma happy. A win-win.

Melanoma is an extremely expensive cancer and you know it. PET/CT scans cost several thousands of dollars and the price will vary depending on the facility they're done at. Doctor visits add up as do a constant stream of biopsies. The more advanced stages, 3 and 4, necessitate more visits, more tests and procedures, more surgeries, trials, and often really expensive treatments. Let's see, a round of Yervoy (four treatments) costs roughly $120,000. And that's just one of the few new drugs available. All of our "designer" drugs are costly. By the time your stage 4 client has gotten to this point you've already spent a lot of money. The more stage 3 and 4 clients you have, the more you are spending. The more you are possibly, also, changing their coverage. You're covering less and less, maybe. Making the sick pay more and more. Maybe even dropping some of them. You know the number of cases are growing, too.

At the same time all this is happening with clients with higher stage melanoma, you're also, MOST of you health insurance companies, not all of you but most, denying scans to your lower stage clients, those with stage one or two melanoma. NOT SMART!

If you were more proactive with them, you could save yourself a ton of money in the long run, make your stock holders really happy, and your melanoma clients would rise up and call you blessed. Trust me, you really do want them to rise up and call you blessed. That's FARRRRRR better than what they're calling you right now.

Your ignorance of our disease is costly for all of us. You really do need to learn a thing or two or three about melanoma. People with stage one or two melanoma live in fear of having a renegade melanoma cell loose in their system waiting, growing, lurking. Because they are usually denied scans at these stages, they don't know. News flash, and Health Insurance companies, you really need to understand this: Stage one and stage two can become stage 4 mighty fast if left alone.

Make that $4000 or so PET/CT scan mandatory for ALL your stage one and two clients with melanoma, at least once a year, twice if they request it, and you will save shelling out for those later stage surgeries and treatments and hospital stays. Promise. Maybe not in every case, but common sense says "most" cases. You DO have common sense, don't you? Right now you aren't acting like it.

It is farrrrr easier and cheaper to stay on top of melanoma, when caught, in the early stages than for it to be left alone and dealt with in the later stages. You'll also save money on those therapist sessions you pay for so some of your clients can come to grips with this disease and you'll save on buying some of the anti-depressants you're co-paying for right now. There are a lot of costs associated with leaving stage one and two alone to wait and see what it does.

I really do implore all insurance companies and the policy makers to get in touch with your human side. This disease can strike in your family, too, you know. How would YOU like to live under the policies you force on us?

I know people who sell insurance and count them among my friends. They're great people and people of strong faith, but they are not in the policy "making" part of the business, but they do have to enforce the policies that are in place and relate them to their clients...who are, also, often, their friends. That's bound to put them in uncomfortable positions.

People in the corporate and policy making part of Life and Health Insurance companies: have a heart. Remember we're all people and in this together. Remember a melanoma diagnosis can strike you or a loved one. If you are fortunate enough to receive an early stage, as opposed to a late stage, melanoma diagnosis, you'll understand the angst and worry and fear that comes with that diagnosis and denial of scans. We aren't asking for the moon. We're asking for you to do your best for us and give early stagers a better fighting chance.

You'll save money. Yay!

You'll save lives. YAYYYYY!!!!!

It's a win-win and we'll all be mighty

Grateful!

Tuesday, August 7, 2012

Songs And Inspirational Videos For The Fight

The "Cancer Fight." This is, by no means, an exhaustive list. These are links to my personal favorites brought together, under one roof, for your convenience. I wanted to post the videos themselves instead of links, but I guess I got greedy and wanted to put too many on one page because blogger wouldn't let me embed this many. Sorry.

Miley Cyrus' The Climb
http://www.youtube.com/watch?v=ShaFa-pAA44

Matthew West's Survivors
http://www.youtube.com/watch?v=iQiip2j2ZT0

Bomshel's Fight Like A Girl
http://www.youtube.com/watch?v=wRWZ1A-CbJA

Performed by several artists Just Stand Up
http://www.youtube.com/watch?v=ZAhpdXMh7NY

Jim Valvano's ESPY Speech Don't Ever Give Up
http://www.youtube.com/watch?v=HuoVM9nm42E

Derek Redmond's Olympic Race
http://www.youtube.com/watch?v=kZlXWp6vFdE&feature=youtu.be
 

The Don't Quit Poem
http://www.youtube.com/watch?v=VkCFeNeqyHk

May these be a blessing to your battle, an encouragement for your fight, and lift up your spirits.

Charis

Saturday, August 4, 2012

6-9 Months To Live? Chaplain Boss Queen Speaks To Doctors And Those Told Those Words

And man, has Chaplain Boss Queen, that would be me, of Hotel Melanoma got something to say!

I'm kinda plenty ticked right now about this. I'm reading too many times where my melapals have been told by doctors that they have "6-9 months to live."

Doctors, how dare you? How dare you play God and tell ANYBODY that? Especially in this day and age? Especially when you see people beating those odds time and time again? How dare you strip away hope and leave fragile souls believing that YOU have the right to tell them this and they'd better listen up and plan to die soon? How dare you?

I understand you're covering your own back. I understand that you've seen cancer many times and sometimes, if you tell enough people this statistic often enough, some people really will die within 6-9 months...just like you said. I understand what you're doing.

The question is, do YOU understand what you're accomplishing when you do this? I don't think you do. You take an oath to "do no harm." Weeelllllll, you're doing a great deal of harm when you give a death sentence like that; a death sentence you have no right in giving.

Yes, tell people the truth about their disease. Tell us stage 4 and mets all over if that's the truth. Tell us this is serious and we may die younger and earlier than we thought. Ask us if our affairs are in order and tell us if they aren't that we need to get them in order. All of that is fine and called for.

BUT! Stop your mouth short of saying "You have 6-9 months to live." You're dealing with fragile souls...souls who need hope. You're dealing with families who need hope. You have no right to take that away. Even the strongest, toughest man wilts when told those words. Some people will pull themselves together and continue the fight. They'll ask for "what's next in treatment and trial options" and they'll kick up their fight. Some of them will add YEARS to their lives. And YOU know this! You've seen it. Some people will hear your words and give up. Your 6-9 months will have drained the life and fight right out of them. They'll go home and decide if they want quality over quantity. These are probably the ones that make your stat come true. What would their outcome have been if you had kept your mouth shut and never said "6-9 months"?

Tell your stage 4 patients plenty continue the fight and live longer than ever before. Tell them some don't. Tell them they won't know which group they belong to until they try. Tell them the fight is worth it. Give them the tools to fight with. Do your job. You're trained. You'll be able to tell when the death process sets in. Even then, you've seen it, that death process can still turn on a dime and be postponed. People who were "dying" went on to live another ten years. It happens. That's God's call; not yours! Do your job and let God do His. And it's your job to help your patients live and live with the best quality possible given their disease and options. You cannot control how bodies react to any treatment. You DO control which treatments are offered and tried. Do your job and keep your grim statistics to yourself. Be helpful and not harmful.

And finally doctor, are you a melanoma specialist? Not a "general" anything or a specialist in another cancer. Are you a melanoma specialist? If you are, refer your patient to another one for a second opinion. Just because YOU aren't willing to do that difficult surgery or try another treatment doesn't mean a colleague of yours will feel the same way. If you are NOT a melanoma specialist...what in the world are you doing with a melanoma patient??!! Get this person in the hands of a specialist ASAP! Here, I'll help you. This is Aim at Melanoma's list of melanoma specialist oncologists. Where you find them, you will find surgical oncologists and dermatologists who specialize in melanoma.

Now, that said, fellow person with melanoma...don't give up hope. If you've been told that you have 6-9 months to live...well, that might, indeed, be accurate. It, also, may be completely wrong! You won't know if you don't fight! You're still in the fight and you've still got a race before you so fight and run. Run and fight. Keep going and don't give up until God says it's time to get ready to leave this place. Don't give your doctor that kind of power over your emotions and life. If your doctor won't change that stat and hush then you change your doctor. Life's short enough as it is. Don't stick with someone who doesn't have your best interests at heart. Find a melanoma specialist, or find another if you're currently seeing one, and get a second opinion and possibly more years on this earth.

As Chaplain Boss Queen of Hotel Melanoma, I'm hearing time and time again stories from people who were given that same 6-9 months and, years later, they're still here. They're going as strong as possible and while, yes, many are doing grueling and intense treatments and dealing with tough side effects, they're HERE and enjoying the life they have. They'll tell you in a heartbeat that the fight is worth it. Don't give into the depression that follows that stat and prepare to die. If you do that, you will, probably do just that. Die.

Even several years ago warriors were given that stat, they fought and many lived more years. And that was before the newer options we have available now. If you aren't given fighting options, GET A NEW DOCTOR! GET A SECOND OPINION! WHAT HAVE YOU GOT TO LOSE?

What have you got to gain?

6-9 months? More? Years?

Don't let anyone play God with your life.

God is quite capable of doing that.

Be grateful, be blessed.

Choose life.

Friday, August 3, 2012

What IS It About "Cancer" That Makes Some People Squirm?

Especially when it's not their cancer?

So, earlier this morning, I'm riding down in the hotel elevator from my 16th floor to the lobby and I'm riding with a family of five. Two parents and three teens. I've got on my "sunburst" compression sleeve and glove and it blends in nicely with my short-sleeved rose-colored shirt.

The dad is eying my arm and says, "I thought at first that was a tattoo, now I see it's your shirt sleeve." OK, pardon me while I chuckle a little. I may be playing the role of country goes to city right now, but my shirt sleeves DO happen to match! I'm not wearing one long sleeve and one short one. Even fashion senseless me knows better than to try that!

So, I explain, "No, this isn't my shirt sleeve. It's compression. I have cancer...melanoma..." and I proceed to explain about my lymph nodes having to come out because the cancer had spread and how BC (before compression) my arm looked like a balloon waiting to pop, but this keeps my lymph fluid flowing...

And "it" happened. If you have any kind of cancer you know what "it" is.

The minute I said "cancer" his eyes averted and his feet shuffled. His wife shot him a look that said, "You are soooo dead meat." All three teens started looking at the elevator floor. And Poor Guy wanted to push through the doors and take his chances on what would, or would not, catch him should he plunge.

And, yes I did...I kept talking. Really. Sixteen floors can be a long ride down! Hallelujah Thine The Glory! I live for this kind of perfect moment. Besides, after the nightmare of finally finding the hotel last night, well, God kinda owed me a little fun! I told all listening (and they couldn't help but listen) that I also have a snake-skin pattern set and being a preacher, people who know I'm a preacher really do a double take the first time they see that one and tell me they didn't think preachers got tattoos like that! You can only imagine who got off the elevator fast and first when we got to the lobby!

Probably every family on earth either has been or is affected by cancer and that word can still make us uncomfortable. We can still not know what to say or how to act.

And pastors can be among the worst at these times. I got the most heart breaking message from a friend because her pastor totally ignores her husband with stage 4 melanoma. This pastor has a history of not knowing what to do when families are dealing with members with cancer and/or dying from it.

Clergy pals, your congregation needs you to have some skills when it comes to being with the sick and the dying. Get some Hospice training. Talk with the Chaplain of your local hospital. Throw yourself into the deep water if that's your style. Hospice has some books you can order if you want to and I advise families who are in those thin places to also read them so you'll have an idea of what to expect and an idea of the things that might occur.


Living at the End of Life: A Hospice Nurse Ad… (Paperback) by Karen Whitley Bell RN


We all need to be prepared. With the cancer statistics being what they are, every single one of us will hear those dreaded words at some point in our lives. Either we will get our own diagnosis and/or a close loved one will.

Even if your family should completely escape cancer and you never, ever know anyone with it, death isn't going anywhere.

We don't have to like cancer or death. That's just plain stupid, to put it nicely. But we do need to be able to hear those words and be around people who live in those worlds without wanting to bolt. Or worse, without showing up and being there for them. Cancer and dying are lonely worlds.

So, learn how to deal with it. How to face it. How to interact with people who have any stage cancer or other catastrophic illness. How to accept the unacceptable and cope with what must be coped with. How to be in the presence of death and be with the dying.

Especially if you are a member of the clergy. Your congregation will rise up and call you blessed and you will be

Grateful.

Here are links to past posts that may help:
http://letsgivethanks.blogspot.com/2011/10/cancer-etiquette-if-you-know-someone.html

http://letsgivethanks.blogspot.com/2012/07/after-death-etiquette-please-read-if.html

Thursday, August 2, 2012

Sorting Out ALL The Faces And Scars Of Melanoma Projects

Because there are several projects and sites revolving around The Faces and Scars of Melanoma, I want to take this opportunity to bring them all together, under the roof of this blog post. What follows is a list of all the ones I know about and how you can participate.

Two are on Facebook and both of these open community pages are administrated by Susan Visch Hayes, mother of a daughter who has stage 4 melanoma. Susan is also owner of Jilly's Jems. Note: Jillian died December 29, 2012.

1. The Faces of Melanoma. You share your own picture and story on this page. You can share the picture of your warrior, living or deceased.

2. The Scars of Melanoma. Again, you share your own picture of your scar(s) associated with your melanoma.

Posting and sharing on these two sites begins and ends there. Nothing is passed on to the Internet website.

I administrate the following pages which are on the greater Internet.

1. The Stories Behind the Faces of Melanoma. This is a blog set up specifically for you sharing your own story or the story of your warrior. Simply go and write your story in a comment box. I don't have to be notified for you to do this. Google will send me a message. When a new page needs to be opened up, I start a new page. If you do not have a Google account, you can post anonymously. Some people have emailed me their story and I will post them for you. But, this is something you can do without going through me.

2. The Faces And Scars of Melanoma. This is for the current warrior, as well as for remembering those who fought their fight and rest. There is also a page for scars. And, if you are doing anything to raise melanoma awareness, there is a page for that info as well. HOWEVER! ALL submissions and pictures must be emailed to me and I will post them. Details for submission are on the website. Please pay close attention to them. Remember, there is nowhere on the website for anyone, other than me, to add things.

I encourage you to look at the website and see how I do each page. That will show the kind of info to send. I keep all the emails in case there are any questions later. I'll be glad to post a picture of your face on one page and your scar on another. If you have a website or blog, let me know and I'll link your name to it. It doesn't cost you anything, only the time it takes to send an email.

3. facesofmelanoma@yahoo.com This is the dedicated email address for sending submissions to the website. After I put your info online, I will email you where to find it.

Submitting to the website is ONLY to the website. I don't also post info to the Face book pages. 

I realize this can all get confusing when we see info about one project and think that's it or think all these are linked together. I hope this helps.

All of this began with Susan's remark and this blog post about her remark.

Please share your picture and your scar, your projects and our stories. Share those of your warrior.

We're in this together and we are

Grateful!