it’s about the lymphedema

Yep. Lymphedema.

That’s my leg in the photo at the bottom of this post. And I tinted everything pink, I don’t actually have bad circulation 🤣 But lymphedema isn’t pretty, and tinting it pink just amused me. Probably because everyone makes everything breast cancer related pink.

Anyway, not all breast cancer patients get lymphedema, some of us like myself, escaped it for years.

When they take out your sentinel node during surgery, they always tell you don’t do anything on that side. No blood pressure cuffs, IVs for future surgeries, bloodwork, etc. I avoided everything on my left side where the sentinel node came out until I had knee surgery on my left knee. Then the swelling started in earnest.

I had bits of swelling in my left arm years ago, right after surgery. But it did not last. Thank goodness. If I fly I have to fly with a sleeve for my arm. Every breast cancer survivor should get fit for a sleeve for the arm where the lymph node came out to fly with.

Lymphedema is obnoxious and I only have it to a lesser degree. I have friends who have this quite badly. They get wraps and other treatment. Mine is almost like massage. It’s manual lymph drainage. It’s fascinating because the movements of the therapist are light and slight, but the results are unbelievable. The fluid just goes away and the swelling dissipates.

With me the lymphedema occurs primarily from my toes to the top of my calf. Sometimes it creeps past my left knee. And it’s funny, I’ve had meniscus surgeries on both knees now and the left knee took longer to heal and longer for the swelling to go down and now I know why. It was lymphedema.

With lymphedema when it’s going on my left leg doesn’t have the same mobility or range of motion as my right leg. It also feels more and more like lead the more it swells. Sometimes the left leg feels warmer than the right. It’s weird.

My doctors at Penn Medicine have been supportive about my trying to get this under control now so it doesn’t get worse. The way I understand it is I will always have this. My physical therapist is awesome. I have a bunch of exercises I do each time and along with the massage/lymph node drainage. And my leg is measured every time.

It used to be kind of difficult to get therapy for lymphedema. As a matter of fact I didn’t know I could have it until it showed up in my left leg over the past couple of years. If you are suffering from lymphedema, talk to your care team. The physical therapy for it is helping. I totally don’t love that breast cancer gave me yet another gift. But I am grateful that I have access to the tools to help make it manageable.

Be well.

What my leg looks like when it’s starting to swell.

About carla

Writer, blogger, photographer, breast cancer survivor. I write about whatever strikes my fancy as I meander through life.
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