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.”