I was told that only 15-20% of women develop Lymphedema after a lymph nodes dissection.

It seems a wrong expectation that I, who removed a total 27 of them in two surgeries, could be in the lucky group.

Yesterday I was diagnosed with Lymphedema by a Physical Therapist.

Lymphedema is a condition when lymphatic fluid with protein stays under the skin without channels to go back to blood vessels due to the massive loss of lymph nodes, and causes swollenness, pain, or skin, or tissue damage.

The PT measured both of my left and right arms, hands and fingers’ circumferences.  Although it was just 1mm different between left and right fingers, the higher she measured my arms, the bigger the left became – up to almost 3 cm more than the right.

“ The arm is still soft, so it is a mild lymphedema,” said the PT.  Showing me how to stroke to navigate the fluid out of my arm, she also gave me a compression sleeve and told me to wear it during the day time as long as possible.

“ How long do I have to wear this?” I asked her.

“ For all of your life.”

She replied explaining that   Lymphedema is manageable, but not curable and if I don’t wear the sleeve, my arm may become bigger.

Looking at the sleeve that is thick and long covering up to my palm, I asked again,

“Do I have to wear this even in summer?”

“ If heat is high, it gets worse. “

Oh no!  Do I have to wear such a thing even on a hot day in summer for the rest of my life?!

I doubted my ears.

“ You don’t have to wear it during the night.  For formal occasions you don’t have to wear it, but if you leave it off for a while, your arm will become swollen again.”

“This color is not pretty, but you can have three custom made sleeves.  There are different colors and you can chose what you like…..but,  radiation may change the size, so if that’s the case, we are going to measure the size again.”

Listening to her business-oriented explanation, I felt my spirit going down fast.

Just as I thought I could control diarrhea of the new drug, Tykerb, I got trapped again with Lymphedema.

Radiation May Worsen Lymphedema

Next day, I visited a radiation oncologist to get ready for my radiation therapy.  Explaining the risks of radiation, she as well mentioned that probably the Lymphedema would get worse.

“ Is there any way to prevent it?” I asked, but she said, “No.”

In fact, she warned me that I might have another Lymphedema in my chest, skin keloids, or even harden tissue, skin, or muscles.

I understand she had to explain all risks, but I was tempted to run away.

After I got home, I googled “how to improve Lymphedema.”  Although my PT didn’t recommended  weight lifting, lots of sites say weight lifting is good for Lymphedema.

Knowing that the Lymphedema may worsen by radiation, now I have to pray and trust our Lord.  If He says I have to live with it no matter how it gets worse, I have to surrender to Him.  Remembering Jesus on the cross,  whom I was profoundly touched by on Good Friday, I will brace myself to go through anything if He wants me to do.

One thought on “Lymphedema

  1. Hi Kathy,
    I’m updating myself on your blog at the moment and just found out this has happened to you. I’m sure you’ve read this already somewhere, but just in case, here are some things I read in one of my books that can help you with lymphedema.

    1) It is good to wear your compression stocking in the morning before gravity has its effects on pulling the fluid towards the distal parts of your arms.

    2) range-of-motion exercises will help keep the fluid from stopping at one place. You can do things like arm circles and flexing then extending your arms.

    3) It also says to take good care of your skin and keep it clean. Since your skin is softer it is more prone to injuries. Keeping it clean will help reduce the chances of infections.

    Having new health conditions added on to your current one is never easy…but you are a person with a strong heart that can pull through it!

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