What Is "Lymphedema"?

That was my question back in November 2008. In two surgeries I had had all 27 lymph nodes removed under my left arm. While I still had my drainage tubing in, I began to notice something weird going on with my arm. It was getting "puffy" to put it nicely and it kept "growing." In less than two weeks, my whole arm and hand looked like a balloon that would pop if someone pricked me with a pin. It was annoying and uncomfortable. And it would start hurting after being awake several hours. I had no clue what was going on but I didn't like it. No one had told me that whatever was happening...might.

So, I called my melanoma specialist surgical oncologist at Duke and spoke to his wonderful nurse, Karen, with all sorts of initials after her name. I told her about my arm. Her reaction? "I wonder..." and she put me on hold while she consulted whoever she consulted. When she returned she told me that it sounded like lymphedema had started, but if that starts in someone it's usually not so soon after surgery. It can take yeaeaeaeaears, up to 20, for it to set in. So I made an unexpected return visit to Duke for Dr. Tyler to look at my arm and then he sent me straight to the Physical Therapy Department at Duke...they had already made me an appointment to be seen. Sure enough, it was lymphedema. Because Duke is over 2 hours away, the physical therapist I saw got online and found me a PT who was certified in lymphedema an hour closer to me. She was in Chesapeake, Virgina. I've written a little bit about my experience with her.

I learned a lot about what lymphedema is. When lymph nodes are removed, most people's lymphatic system will kick in, adjust, and pick up the slack. It will compensate for the missing nodes and they really aren't "missed" because the fluid will reroute to nodes close to the missing ones.

Then there are people like me and those missing lymph nodes are missed! Nothing kicks in and lymphatic fluid builds up. Mine was in my arm. It can happen in a leg if lymph nodes were removed from the groin area.

If this is you, my advice is to contact your surgical oncologist or oncologist and let them see your limb. The facility you go to should have a physical therapy department and your doc can get you an appointment to see a PT knowledgeable about lymphedema.

This is a condition that can be brought under control with proper exercising, massage, wrapping/compression, and other treatments a PT might consider necessary. If it's not too bad of a case, you'll be able to manage it on your own with massage and exercise. If it's worse, like mine, you may need compression. I will wear compression, everyday, for the rest of my life. And that's OK. I'm here. BTW, my physical therapist specialized in lymphedema and she told me that once in compression, always in compression...don't think "it's better" and stop wearing it or you'll balloon back up and it will have to be brought back under control again.

A bit of bright news amongst the bleak: I've discovered Lymphedivas which is where I now get my sleeves and gloves. No more BEIGE!

I've learned what works for me when it comes to managing this. Five years down the road and I STILL sleep with a small pillow under my arm. I keep it elevated as much as I can when I'm awake and always drive with my arm propped in the window. I stretch and move my arm around a lot. Ibuprofen and I are close friends come nighttime. I don't like being in the hot or in the cold. Comfortable can still be uncomfortable in that arm, but again, that's OK. I'm here.

It's just one of those bumps in the road, but it can be dealt with. And I really do advise dealing with it with the help of someone who knows how to help you. Don't try to deal with it alone.

But's that me. I was blessed to be handed to the Physical Therapy Department at Duke on a silver platter. I'm just passing along what I benefited from. Hope this helps.

charis

Psalm 91 In The Face Of Cancer

I find great hope and solace in the Psalms and they have taken on a deeper, richer meaning for me ever since 2008 when melanoma ripped into my life. Psalm 23, particularly, spoke to my soul in ways that reach far beyond the normal "funeral" rendering. But I must admit, Psalm 91 gave me troubles.

I had a wonderful melahomey who used to sign off his Facebook posts/comments with "Psalm 91." And every time he did, I would go back and read this and shake my head. Here he was, living with stage 4 melanoma, and clinging to Psalm 91. I hate to say that it took me, ME!, a while to get it.

I had fallen into the somewhat modern trap of, temporarily, forgetting what David, and all the Psalmists knew. What the Israelites knew and took for granted: God's promises stand. And they stand in the present and in the future and because God always keeps His promises, they were quite comfortable, and happy, to mix them up. Take for instance verse 3. They trusted that God would protect them from deadly disease. And yet, they, like us, got/get deadly diseases. That just didn't sound like "protection" to my ears. My friend cherished that verse. My friend with deadly stage 4 melanoma. That killed him. Why didn't God protect him?

But you know what? He's protected from deadly disease now. My friend knew in his soul what I needed to remember, and that is that God keeps His promises. God has all eternity. We're the ones who think in terms of a "lifetime". We live in a fallen world inhabited by deadly viruses, bacteria, diseases, wars, pestilence, etc. But a world awaits us where those things don't exist. They aren't merely "absent." They do not exist. They aren't part of the vocabulary.

My friend, and many, many others around the world, suffered from, lived with, and thrived in spite of, melanoma, cancer, deadly disease. He looked forward, without fear, to a time when suffering would not be part of his life. He trusted God to keep His promise and let him find rest, refuge, and safety. He knew that when his time came and death was at the door that God would protect him from its final ravages and send for him and protect his journey. He knew he would be rescued. And he would be rewarded.

You know what? Melanoma got his body. True enough. It never, never, not once touched his soul.

I leave you with Psalm 91 from the New Living Translation. God's promises stand. And they are for the present and they are for the future. Bless the Lord, o my soul. O my soul.

charis

Psalm 91 (New Living Translation)

¹ Those who live in the shelter of the Most High
    will find rest in the shadow of the Almighty.
² This I declare about the Lord:
He alone is my refuge, my place of safety;
    he is my God, and I trust him.
³ For he will rescue you from every trap
    and protect you from deadly disease.
⁴ He will cover you with his feathers.
    He will shelter you with his wings.
    His faithful promises are your armor and protection.
⁵ Do not be afraid of the terrors of the night,
    nor the arrow that flies in the day.
⁶ Do not dread the disease that stalks in darkness,
    nor the disaster that strikes at midday.
⁷ Though a thousand fall at your side,
    though ten thousand are dying around you,
    these evils will not touch you.
⁸ Just open your eyes,
    and see how the wicked are punished.

⁹ If you make the Lord your refuge,
    if you make the Most High your shelter,
¹⁰ no evil will conquer you;
    no plague will come near your home.
¹¹ For he will order his angels
    to protect you wherever you go.
¹² They will hold you up with their hands
    so you won’t even hurt your foot on a stone.
¹³ You will trample upon lions and cobras;
    you will crush fierce lions and serpents under your feet!

¹⁴ The Lord says, “I will rescue those who love me.
    I will protect those who trust in my name.
¹⁵ When they call on me, I will answer;
    I will be with them in trouble.
    I will rescue and honor them.
¹⁶ I will reward them with a long life
    and give them my salvation.”

And Now A Word From A Slacker

Yes. That would be me. While I admit to preferring my "Hotel Melanoma Chaplain Boss Queen" hat, I'll be honest enough to wear any hat that fits. And, right now, I'm a slacker. I have that on good authority...namely the HM proprietor. And since he's my boss and in charge of my dinky, almost non-existent office space, I'll agree with him, write a new post, and not call him a "jerk". Insert annoying smiley face here.

Yes. I am having an attirude kinda day! It's not about me though. It's about life and changes that are coming and not completely pleasant changes, at that. Nothing to do with melanoma. But it is what it is and we'll roll with the punches and find blessings. And we'll be thankful. Even in the unpleasantness that is sure to come eventually. We will live out our faith. Faith demands to be lived out and put on display in the trying times or it has no powerful voice when all is well.

My heart is full right now. It just is. I don't like watching golden years take on a little tarnish. I don't like watching vibrant oldsters slowing down and not because they choose to but because this is life.

And they teach us younger ones grace. Grace and faith in abundance. And hope. Don't forget hope. They teach us to embrace true living, in the good times and in the bad. In all seasons for there truly IS a time and a season for everything. If we're blessed enough to live long enough to see ALL the seasons.

And they teach us always to be

Thankful!

charis!

Things Your Dr. May Not Tell You With A Melanoma Diagnosis

But you need to know. And, frankly so may your doctor. So, if you're a doctor and you're reading this, please take notes and make any necessary adjustments. Your patients will have even more reasons to rise up and call you blessed! Note: these are in no certain order; just as they come to mind.

When given that melanoma diagnosis, you may not be told that...

1). You need to be in the hands of a melanoma specialist. This is particularly true if your melanoma is invasive as opposed to in situ. This is Aim at Melanoma's link to melanoma specialist oncologists in the USA and in Canada. If you are in another country, please either contact me and I'll help you, or, do an Internet search for a melanoma organization in your country and contact them. They should be able to help you. Where you find oncologists who are melanoma specialists, you'll also find surgical oncologists and dermatologists who are melanoma specialists. About dermatologists in general: ALL should know at least the basics about melanoma and skin cancer, but not ALL make it the focus of their practice. We are in a specialized world and that is their right. You need to be in the hands of one who HAS made melanoma and skin cancer their focus and you need FULL-BODY skin checks twice a year (some advocate for one if you're lower staged).

2). Doing an Internet search on melanoma is a bad idea. OK, you may actually be told not to turn to Dr. Internet. But, let's face it, you probably WILL. So, what you won't be told are the best sites to read. The following are my preferred sites. Look over them carefully as they each offer special helps and resources for us. Aim at Melanoma, Melanoma Research Foundation, Melanoma Research Alliance, The Skin Cancer Foundation, and the American Academy of Dermatology.

3). You are going to change. And it won't just be visible scars from biopsies and any surgeries that may follow. It will be those invisible scars that can be the worst. The more you learn about this disease, the more scared, and maybe angry, you'll get...particularly as appointments near...and these mood swings can kick in months prior to the appointment and get worse as the date nears. You won't calm down until the appointment is over and any results are in. I call this "attirude" and you can do a blog-site search for the term.You'll probably find your priorities changing also.

4). Some of your relationships may change. There are still a lot of misconceptions and downright ignorance about this disease. I can't tell you exactly what to expect or who to expect it from. I can't tell you that it definitely WILL happen, but I can tell you the possibility exists, so be prepared. But don't look for ugly attitudes under every rock either. Take support where you can get it and if you're on Facebook, look me up. While some relationships may change, do your part to cherish those you love and let them know you appreciate them. You cannot control other people and how they react to your diagnosis, but you CAN control how YOU behave and react to the people in your life.

5). You may want to talk with a therapist who is trained to talk with people who have been given a cancer diagnosis. If I ruled Melanoma World this is one thing I would make sure happens with every diagnosis no matter what the stage. If you want to know others things I'd do read this post.

6). There's a LOT of HOPE on this road you've just found yourself on. While you're on it for life, this is no longer the automatic death sentence that it once was. But that reiterates why you now need to be in the hands of a melanoma specialist because they are the ones who are up on all the advancements going on in our world. Give yourself every fighting chance.

7). You are not alone. Connect. Pray. Do something that is therapeutic for you: write/blog, advocate and educate, paint, do something you've always wanted to do. You have now faced your mortality but you are ALIVE, so LIVE! None of us, with or without melanoma, have any guarantees in this life. Make the most of the life you have. No regrets.

8). Look for miracles and blessings. They really are all around you. Make it a point to find at least five a day and be

GRATEFUL!

charis

Learn More About Your Melanoma Drug

I get asked about various melanoma drugs a lot. Though I've never used any and cannot speak from experience, I do have access to a lot of people who have either tried, or are currently using, the treatments that are available. Not everybody, though, has access to advice about how to handle side effects or what to watch for. You can, and should, talk with your doctor, but I've noticed that when side effects start, people want to know if theirs is "normal" and they want to know what to do about it right then...not call the doctor's office. Also, not all my melahomies are in groups where they can pick the finest and kindest minds around for info.

That's where this post may come in handy. I'll be the first to admit that this will not be an exhaustive list of resources by any means, but hopefully it will be helpful.

All drug manufacturers have websites, and often an individual drug will have its own site. Here are three drug sites where you'll find patient resources of various kinds. You'll also find possible side effects that are associated with the drug and possible remedies. You'll learn when to call your doctor. Scour the website of your drug. NOTE: I'm using the more common names and not the scientific name.

Zelboraf

Yervoy

IL-2

Temodar has a site but it's only for "health professionals." If you click on "not a health professional" you will get Merck's website. Which, be sure to look at the website of your drug's manufacturer as that is where you may also find info for patient assist programs, etc.

Information for  Interferon alfa 2-b and all the Interferons, as well as the above drugs and more, can be plugged into drugs.com which is the go-to site for pharmacists.

The information at drugs.com can also be easier to understand for laypeople. Information is out there. Do an Internet search and see if your drug has a website. If it doesn't, its manufacturer certainly will. And do check out what drugs.com says about your drug.

Information from reliable sources is out there and at our fingertips. And, by all means, plug into support groups if at all possible. There are excellent ones online, particularly on Facebook.

We're in this together.

charis

HM CBQ Tsk-Tsks Fellow Clergy Regarding Melanoma

I'm on a roll, I guess. My melahomies need me to put on my Hotel Melanoma Chaplain Boss Queen hat, again, and issue a tsk-tsk that I regret having to make. This one goes out to some of my fellow clergy. I know there are many who do, indeed, know what melanoma is. They have it themselves or have seen it up close and personal in loved ones. I am not the only person standing behind a pulpit who also lives with this diagnosis. Nor am I the only one with an understanding of this disease. But I know there is one clergyperson who is ignorant, and where there is one, there are more. This post is for the clergyperson whose attitude toward melanoma is...

"not a big deal, people have that all the time, and they will just cut it out." The full context of this is in a comment that was left under my last post. Here's the relevant part, "Honestly, I have not been to church all summer because of the response I got from our pastor when I called to tell her about my melanoma diagnosis. Her response was that it was not a big deal, people have that all the time, and they will just cut it out. I'm tempted to send her a photo of my scar."

If that sounds familiar and is your attitude, please read this post Skin Cancer and Melanoma for Dummies. Read about the different stages at Aim at Melanoma.

And understand this and understand it well: a lack of understanding and compassion for your parishioner who has a melanoma diagnosis, at any stage, may cost you a parishioner, maybe even a whole family. It may cost you your reputation if they bad-mouth you to others and talk about how unfeeling you are. And understand your parishioner may die from this disease. Even if the person first calls you and tells you they are stage 0 or 1a. That can progress to stage 4 within a year. It's rare, but that happens. And once it progresses to stage 4, depending on where it spreads, how aggressive it is, and how well your parishioner responds to treatment(s), your parishioner could die within months from that stage 4 progression. Prayerfully that scenario won't happen. But it can. It does.

Melanoma is NOT the same as basal cell or squamous cell carcinomas. Both of which, by the way are scarring, disfiguring, and can be fatal...though rarely, particularly it's rare for basal cell to lead to death but it can happen. Read that post I linked to a couple of paragraphs up and do a blog site search about melanoma. Melanoma is not "just" skin cancer. It shouldn't even be still called "skin cancer" and the more you learn about basal cell and squamous cell...well, they aren't "just" skin cancer either.

I hope that when anyone in the clergy hears that a parishioner has cancer of any kind and any stage that "it's no big deal" is not the response. And frankly, I cannot imagine that it will be. Why is it the response, for some, towards melanoma?

Learn about this disease.

Oh, and by the way, if you're old enough to be in the pulpit, you're old enough to have had a sunburn or two in your past. You may have been in a tanning bed. And since you're human, you have a body. This disease doesn't need skin to start or spread in. A body works well. Got a mouth? Eyes? Ear canals? A rectum? Nails? This disease can literally start anywhere. Any race, age, or gender. And you know another horrible truth about this disease? People who have never had a sunburn, been in a tanning bed, or have a family history of this disease...get it.

So...from one preacher to another...listen to this Southern Mama Preacher with stage 3b melanoma.

I'll be grateful.

charis

HM CBQ Rises Up and Sounds Off

Man. I haven't had reason, or just cause, to don my tri-cornered HM CBQ hat in quite a while now. For the unenlightened, I'm the appointed Hotel Melanoma Chaplain Boss Queen. Before that I was, and still am, a Southern Mama Preacher. Mix that all together, stir or shake well, and I'm whatcha get. And right now, I'm plenty fired up. Watch out.

While I have one foot firmly rooted in the church, I also have the other foot firmly entrenched in the melanoma community. My melahomies have my heart, soul, and undying devotion. By "melahomies" I mean those with melanoma and those who battle alongside them...usually their spouse, child, parent, or sibling. Those closest to the warrior who knows all the details of the battle. And those, ahem, who are well aware of the attitudes of others toward their loved one.

Let me grab my trusty soapbox because I am rising up. If you have a complacent attitude towards melanoma, you might want to sit down. Or tune out. Or go into denial and think I can't possibly mean you.

"Denial" is what I want to think many people are into. But maybe not. Everyone's different.

I'm hearing over-and-over and over-again from melahomies who are growing increasingly frustrated by family and friends' flippant, and downright appallingly arrogant/ignorant attitudes about this disease. Flaunting tanning bed usage and sunburns is bad enough. But to hear of a loved one who has multiple surgeries in their battle against melanoma...a loved one...not a mere acquaintance...and shrug it off. To hear of a loved one undergoing a clinical trial and react with, "meh,"...well, we need to talk.

You need to understand how serious this is and what your loved one is up against and battling and how much they need your support. A text will not cut it.

If your loved one is undergoing multiple surgeries...the kind where they have to be put to sleep...then your loved one is in the stage 3-4 range. They are having lymph nodes removed at best and parts of major organs removed at worst. They are having tumors removed. If your loved one is undergoing any type of radiation, same thing. They are fighting mets and are in the later stage 3-4 range. If they are undergoing clinical trials, they are in the stage 3-4 range. And just so you know, stage 4 is as high as it goes. There is no stage 5.

This is serious. The disease can progress. They may die. They are doing everything they can to stop their melanoma and beat it back. They can use your support. They need you to understand, or at least try to understand. They need you to learn, ask questions, pray. They need a hug now and then. They need you to get your head out of the sand if you're in denial. This is real. Being put to sleep for surgery is risky. Getting infused with toxic chemicals that are being STUDIED is risky. Not fighting melanoma is riskier. Your loved one doesn't have much of a choice. It's either fight or die. Really.

I invite you to do a blog site search and learn about this disease. Especially since it's in your family tree. It really may behoove you to learn something, become vigilant and proactive, and maybe, just maybe, you won't be the next one in your family receiving a melanoma diagnosis and needing your family to rally around you!

Oh, and stop posting about going tanning and getting burned. That isn't good for your skin. At all. That's the sign of damaged skin. Your skin won't forgive and it won't forget. It just may rise up and bite you one day.

And I'll be your HM CBQ and I'll love you as my melahomey.

I'm pretty sure, though, that we'd both rather be grateful that that not happen.

charis